[Senate Hearing 106-332]
[From the U.S. Government Publishing Office]



                                               S. Hrg. 106-332, Pt. 1
 
  DEPARTMENTS OF LABOR, HEALTH AND HUMAN SERVICES, AND EDUCATION, AND 
          RELATED AGENCIES APPROPRIATIONS FOR FISCAL YEAR 2000

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

                                HEARINGS

                                before a

                          SUBCOMMITTEE OF THE

            COMMITTEE ON APPROPRIATIONS UNITED STATES SENATE

                       ONE HUNDRED SIXTH CONGRESS

                             FIRST SESSION

                                   on

                           H.R. 3037/S. 1650

 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, 2000, AND FOR OTHER PURPOSES

                               __________

                         Part 1 (Pages 1-572)

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

                               __________

         Printed for the use of the Committee on Appropriations


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

                                 ______

                     U.S. GOVERNMENT PRINTING OFFICE
54-236 CC                    WASHINGTON : 2000

_______________________________________________________________________
            For sale by the U.S. Government Printing Office
Superintendent of Documents, Congressional Sales Office, Washington, DC 
                                 20402
                           ISBN 0-16-060071-5




                      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             FRANK R. LAUTENBERG, New Jersey
MITCH McCONNELL, Kentucky            TOM HARKIN, Iowa
CONRAD BURNS, Montana                BARBARA A. MIKULSKI, Maryland
RICHARD C. SHELBY, Alabama           HARRY REID, Nevada
JUDD GREGG, New Hampshire            HERB KOHL, Wisconsin
ROBERT F. BENNETT, Utah              PATTY MURRAY, Washington
BEN NIGHTHORSE CAMPBELL, Colorado    BYRON L. DORGAN, North Dakota
LARRY CRAIG, Idaho                   DIANNE FEINSTEIN, California
KAY BAILEY HUTCHISON, Texas          RICHARD J. DURBIN, Illinois
JON KYL, Arizona
                   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
JUDD GREGG, New Hampshire            DANIEL K. INOUYE, Hawaii
LARRY E. CRAIG, Idaho                HARRY REID, Nevada
KAY BAILEY HUTCHISON, Texas          HERB KOHL, Wisconsin
TED STEVENS, Alaska                  PATTY MURRAY, Washington
JON KYL, Arizona                     DIANNE FEINSTEIN, California
                                     ROBERT C. BYRD, West Virginia
                                       (Ex officio)
Strip offset folio 0 here deg....................................

                           Professional Staff

                            Bettilou Taylor
                             Mary Dietrich
                              Jim Sourwine
                               Aura Dunn
                        Ellen Murray (Minority)

                         Administrative Support

                             Kevin Johnson
                       Carole Geagley (Minority)



                            C O N T E N T S

                              ----------                              

                       Tuesday, February 23, 1999

                                                                   Page
Department of Health and Human Services:
    Office of the Secretary......................................     1
    National Institutes of Health................................    95

                        Wednesday, March 3, 1999

Department of Education: Office of the Secretary.................   217

                        Tuesday, March 23, 1999

Department of Labor: Office of the Secretary.....................   265

                       NONDEPARTMENTAL WITNESSES

Department of Labor..............................................   325
Department of Health and Human Services..........................   331
    NIH/Health...................................................   331
    Health Issues................................................   506
    Low Income Home Energy Assistance Program (LIHEAP)...........   588
Department of Education..........................................   599
Related agencies.................................................   648
Multiple agencies................................................   667
  


  DEPARTMENTS OF LABOR, HEALTH AND HUMAN SERVICES, AND EDUCATION, AND 
          RELATED AGENCIES APPROPRIATIONS FOR FISCAL YEAR 2000

                              ----------                              


                       TUESDAY, FEBRUARY 23, 1999

                                       U.S. Senate,
           Subcommittee of the Committee on Appropriations,
                                                    Washington, DC.
    The subcommittee met at 9:30 a.m., in room SD-124, Dirksen 
Senate Office Building, Hon. Arlen Specter (chairman) 
presiding.
    Present: Senators Specter, Stevens, Cochran, Gregg, Kyl, 
Inouye, Hollings, Harkin, Kohl, and Feinstein.

                DEPARTMENT OF HEALTH AND HUMAN SERVICES

                        Office of the Secretary

STATEMENT OF HON. DONNA SHALALA, SECRETARY


               opening statement of senator arlen specter


    Senator Specter. Good morning, ladies and gentlemen. The 
hour of 9:30 a.m. having arrived, we will commence the hearing 
of the Subcommittee on Labor, Health and Human Services, and 
Education.
    Today we have a very important hearing on the budget of the 
Department of Health and Human Services, and we are pleased to 
be joined by the distinguished Secretary of Health and Human 
Services, the Honorable Donna Shalala. We have in the second 
facet of our hearing today the National Institutes of Health. 
This is always a special occasion, to have such an outstanding, 
extraordinary, great array of scientists come to a hearing. I 
am always reluctant to have these hearings go very long with 
the NIH heads here because they have such important work to do. 
Of course, it is important as we take a look at what the budget 
will be for this important branch.
    The Congress has been very dedicated to very substantial 
increases in NIH funding, as you all know, because of the 
extraordinary results which you have had. Last year we 
increased by $2 billion, which was an extraordinary sum of 
money considering the fact that the NIH funding comes from a 
common pool for health and human services generally, for the 
Department of Education, for the Department of Labor, worker 
safety, and very many very important items.
    The Congress has consistently, whether the administrations 
are of one party or the other, taken a more generous look at 
NIH funding than has the administration. This year it is going 
to be tougher than ever to find funding which will keep the 
kinds of applications rolling. I had a private meeting with Dr. 
Varmus, interrupted a bit of our hearings 2 weeks ago to get a 
thumbnail as to what is happening.
    But I do know that if the funds are not very substantial, 
it will cut back on the kind of research projects you have. So 
we are going to do our utmost. But I would urge all of you and 
everyone in this room to communicate with the Chairmen of the 
Budget Committees on both houses, in both houses, and the 
Appropriations Committee Chairmen to have an allocation. That 
is what it takes for this subcommittee to make the baseline 
recommendations.
    The work in the field is so extraordinary that something is 
always topical in the headlines. Today's media reports talk 
about the combination treatment of cervical cancer to cut 
mortality by half with a combination of chemotherapy and 
radiation. I am sure we will want to talk about that to some 
extent.
    There have been some remarkable advances on stem cells 
breaking late last fall, and we have already had three hearings 
on that subject and I know it will be a matter of some concern 
again today, although the subcommittee will have a special 
hearing. The law has a prohibition as to NIH funding being used 
for the creation of a human embryo or embryos for research 
purposes or research in which a human embryo or embryos are 
destroyed.
    We have had opinion of counsel from HHS that where the 
funding is private and the stem cells are extracted that it is 
then appropriate for the National Institute of Health to fund 
the research on the stem cells. That is a matter of some 
concern in a number of quarters, with members of both the House 
and the Senate having registered dissents on that issue. It is 
something we will be taking a very close look at in part today, 
but really in subsequent hearings, to make a determination as 
to what the law does allow, although the administration has its 
legal opinion and they operate in that context, or whether 
there ought to be some modification as to that provision.
    We have quite a number of issues. We have just been joined 
by one of our ranking members of the Democrats in the absence 
of Senator Harkin, who I know is on his way. Let me yield, if I 
may, if it is not too sudden--you just arrived, Senator 
Inouye--for an opening statement.
    Senator Inouye. It is always good to have you, Secretary 
Shalala. I just want to join my chairman in welcoming you back.
    Senator Specter. Senator Kyl, would you care to make an 
opening statement?
    Senator Kyl. No, thank you, Mr. Chairman.
    Senator Specter. Senator Feinstein?
    Senator Feinstein. Just to say welcome to the distinguished 
Secretary. I will have my remarks at the question time.
    Senator Specter. Thank you very much, Senator Feinstein.
    Well, welcome again, Madam Secretary. This is your seventh 
appearance, I believe. You have a long run, a very successful 
one. We look forward to your testimony.


                summary statement of hon. donna shalala


    Secretary Shalala. Thank you very much.
    Mr. Chairman, distinguished members of the subcommittee: I 
am pleased to be with you today to present the President's 
budget for the Department of Health and Human Services. With 
your permission, Senator Specter, I have submitted a 
significantly longer copy of my testimony.
    Senator Specter. That will be made a part of the record in 
full and, as usual, to the extent you are able to summarize it 
would leave maximum time for questions and answers.
    Secretary Shalala. Thank you very much, and I will 
summarize it.
    What I really want to discuss with you today is the four 
challenges that we face in the new millennium and the ways in 
which the President's budget seeks to address them. The first 
of these challenges is keeping our promise to older Americans 
to allow them to retire with dignity. An important part of 
meeting this challenge is offering assistance to Americans who 
need long term care. Our budget includes a multifaceted 
initiative designed to provide support to the 5 million 
Americans who need long term care and for the millions of 
working Americans who provide it.
    Among other provisions, the President's budget invests $125 
million in a new National Family Caregiver Support Program in 
the Administration on Aging. This will provide assistance to 
about 250,000 families to care for their relatives with chronic 
conditions and disabilities.
    Another important promise to older Americans is the 
Medicare program. In the 3\1/2\ decades since this program was 
enacted, we have improved both the length and the quality of 
life for our parents and our grandparents. As we look ahead to 
the new century, we owe it to the next generation of seniors, 
including you and me, to make sure that Medicare remains a 
rock-solid guarantee of high quality health care.
    A re-invented Health Care Financing Administration is an 
important part of keeping that promise. Under the leadership of 
Nancy-Ann Min DeParle, the new HCFA has completed one of the 
most challenging years in its history. It has implemented more 
than half of the 300 provisions of the Balanced Budget Act of 
1997 and has approved 50 State Children's Health Insurance 
plans. It has worked with the States to help implement the 
Health Insurance Portability and Accountability Act.
    HCFA is meeting the serious challenges of the Year 2000 
computer compliance. The agency has reported 100 percent of 
internal mission-critical systems and 54 of its 82 external 
mission-critical systems as Y2K compliant. Thanks to the help 
of Congress in providing supplementary emergency Y2K funding, 
we were able to accelerate our efforts and are confident that 
100 of our internal HHS systems will be compliant by March 31, 
1999.
    The President's Budget builds on the excellent work of 
Administrator DeParle and her staff through the continuing 
steps to modernize both HCFA and the Medicare program. While we 
further strengthen HCFA's management, we will also continue to 
fight against waste, fraud, and abuse in the Medicare program. 
Since 1993 we have increased health care fraud prosecutions by 
more than 60 percent and increased convictions by 40 percent. I 
want to take the opportunity to thank you, Mr. Chairman, and 
Senator Harkin in particular for your unwavering leadership and 
support of these efforts.
    Tomorrow, in fact, my colleagues at the Justice Department 
will join me as we announce a new AARP-sponsored initiative: 
``Who Pays? You Pay.'' This program has its roots in what we 
affectionately call the Harkin grants to reduce fraud and abuse 
in the Medicare system.
    Earlier this month we reported some dramatic new management 
success. The Inspector General's annual audit of Medicare has 
found that the estimated Medicare mispayments have gone down by 
almost 50 percent in just 2 years. The Medicare payment error 
rate has dropped from an estimated 14 percent in 1996 to 7.1 
percent in 1998. Do not get me wrong. We have very important 
work ahead and lots of it. But we are moving effectively and we 
are moving fast.
    The President's fiscal year 2000 budget includes $864 
million for the Medicare integrity program and the health care 
fraud and abuse control account. We are also resubmitting to 
the Congress a package of proposals designed to close loopholes 
in Medicare payment policies that will save $240 million in the 
next year and $2.9 billion over the next 5 years.
    The second challenge of the new century is the need to help 
America's working families. Nearly 43 million Americans are 
living without health insurance; 80 percent of them are working 
full-time. Forty-three million Americans are without health 
insurance, and most of them get up every day and go to work. 
The President's budget again allows uninsured workers between 
62 and 65 to buy into Medicare. We also want Americans between 
55 and 62 who have lost their jobs and their insurance to have 
a similar opportunity. We are proposing a tax credit for small 
businesses that seek to insure their workers through a 
voluntary health insurance purchasing cooperative.
    While we work to expand the number of Americans with 
insurance, we cannot forget the health of those who are 
uninsured. Our budget includes a very creative new proposal to 
help communities integrate the care they already provide to the 
uninsured. It provides communities with $25 million in the next 
year and $250 million annually for the next 4 years to 
streamline and help coordinate care for the uninsured and their 
families.
    We are also asking for $1.5 billion for the Ryan White Care 
Act, an increase of $100 million. Included in that amount is a 
$35 million increase in the AIDS Drug Assistance Program to 
help uninsured people with AIDS purchase needed medicines. Our 
budget includes $171 million to continue our bipartisan efforts 
to address the AIDS crisis in minority communities.
    While we seek to help working families, we must not forget 
those disabled Americans who want to work, but are prevented 
from doing so by the risk of losing their health care coverage. 
Last year we all came very close to agreeing on landmark 
bipartisan legislation to allow Americans with disabilities to 
go back to work and keep their health care coverage. This year 
the President is determined that we complete the task and pass 
a law that allows these women and men to take jobs and keep 
their Medicare or Medicaid coverage.
    Mr. Chairman, three-fourths of those who have the ability 
to go to work are not in the work force because they have 
disabilities that make it difficult for them to get health 
insurance. This would offer them an opportunity to keep their 
health insurance and get into the work force.
    We face a third challenge, too, to mobilize the scientific 
genius, much of which is represented behind me, Mr. Chairman, 
to make our Nation a healthier and safer place to live. Our 
budget continues bipartisan progress we are making towards 
meeting the President's goal of increasing the budget for the 
National Institutes of Health by 50 percent over 5 years. We 
are also proposing a $230 million, four-pronged coordinated 
initiative to prepare for the medical needs and the health 
consequences of a bioterrorist event.
    While I am talking about our role, though, I would like to 
mention our role in international health. I would be remiss if 
I didn't mention the importance of the President's request, not 
under the jurisdiction of this committee, but for the World 
Health Organization. I want to make this point: that infectious 
diseases recognize no borders. It is essential that we work 
with other nations through WHO to address the global health 
concerns.
    Tuberculosis is an excellent example. Thanks to our 
aggressive national program, TB in U.S.-born individuals 
declined by 24 percent between 1992 and 1995. But it has 
increased almost 11 percent among the foreign-born. The only 
effective strategy for keeping Americans healthy is to invest 
in the global control of infectious diseases, and TB is an 
excellent example of this.
    Here at home, this budget also invests in our public health 
infrastructure, and makes important investments in the Centers 
for Disease Control and Prevention. We propose $65 million to 
coordinate surveillance activities in the initiatives for 
emerging infectious diseases, for bioterrorism, for food 
safety, and through a national electronic network.
    Mr. Chairman, the President's budget seeks to keep our 
promise to America's children by providing them with a safe and 
healthy childhood. We are asking for $5.3 billion for the Head 
Start program, an increase of $607 million. We include $1.1 
billion for childhood immunization. One of the great success 
stories in this country is getting our children immunized. We 
propose a $50 million program of demonstration grants to the 
States to improve the treatment of asthma in children. Too many 
of our hospitals and emergency rooms are filled with children 
with asthma and we need to make an investment there. The budget 
invests $40 million to help children's hospitals train the 
medical personnel they need to care for our most vulnerable 
children. Our children's hospitals and pediatrician's in 
particular are left out of our training grants because those 
grants are done through the Medicare program. There are very 
few children eligible for the Medicare program. So we suggest a 
direct investment in the training of the next generation of 
pediatricians to make sure that we have quality health care for 
our children. We also propose $1.2 billion over the next 5 
years to help the States reach out to children who are eligible 
for Medicaid or for the CHIP program, but are not yet enrolled.
    Mr. Chairman, I cannot talk about the health of our 
children without mentioning tobacco. Our budget reaffirms our 
commitment to combat smoking by children. The President is 
proposing a 55-cent increase in the Federal excise tax on 
cigarettes. Research has shown us that the best way to keep 
kids from smoking is to make cigarettes too expensive for them 
to afford. The budget includes $101 million for CDC to support 
State tobacco control programs. It provides $68 million for the 
FDA's efforts to enforce youth anti-smoking efforts.
    Finally, we seek to improve the health and safety of our 
children by increasing access to safe and affordable child 
care. This is the counterpart to the children's health 
initiative for working families. Too many working families are 
left out of child care help because they do not have a big tax 
liability, but they are above the cutoff for the programs that 
help people who are moving from welfare to work. If you go 
directly to work and you do not make very much money in this 
country, you are unlikely to be able to get child care. This 
budget proposes that we give those working families child care 
help.

                           prepared statement

    Mr. Chairman, I have laid before you a blueprint for 
preparing our health and social service networks to meet the 
very real challenges of the new millennium. We look forward to 
working with you and the members of this subcommittee.
    I would be happy to answer any questions.
    Senator Specter. Thank you very much, Secretary Shalala.
    [The statement follows:]
                Prepared Statement of Hon. Donna Shalala
    Good morning, Chairman Specter, Senator Harkin, and members of the 
Subcommittee. I am pleased to appear before you today to discuss the 
President's fiscal year 2000 budget for the Department of Health and 
Human Services.
            standing at the crossroads of the new millennium
    What makes my appearance this year before your subcommittee 
distinct from all the others is that we are not only submitting a 
balanced budget for the second straight year, but we are also 
celebrating a landmark bipartisan achievement--last year's budget 
surplus, the first on the books in three decades. In the past, we have 
spoken at great length about the need to balance the budget, and thanks 
to the hard work and cooperation of the Congress and the 
Administration, we have been able to achieve that goal.
    Mr. Chairman, while we can all take pride in helping to achieve 
this success, we must now look ahead together to the challenges that 
still confront us. These challenges are many: helping Americans live 
not only longer but also healthier lives, extending protections to 
those without health insurance or who are at-risk, safeguarding our 
public health, and working to better the lives of our nation's 
children. As we stand at the crossroads of the new millennium, the 
combination of our fiscal discipline, the expanding economy, and a new 
age of scientific breakthroughs provide us with a unique opportunity to 
meet these challenges.
    The budget I present to you today begins to meet these challenges 
through critical investments in the health and well being of our 
citizens. It is a budget that keeps faith with the President's vision 
of a 21st Century America where every family can get ahead and no one 
is left behind.
    Mr. Chairman, the total HHS budget request for fiscal year 2000 is 
$400.3 billion (Outlays). The amount before this committee totals 
$230.7 billion (BA), of which $38.527 billion is discretionary. This 
discretionary component represents an increase of $1.352 billion over 
last year. Let me now highlight the main components of our fiscal year 
2000 budget request.
       the promise of a retirement with dignity for all americans
    Thanks to advances in medical science and health care, Americans 
are now living longer than ever before. By 2030, the number of 
Americans over 65 will double, from 34 million to 69 million. This 
change creates a new set of demands on our health care system, from an 
increasing need for long-term care services to preparing Medicare to 
meet the needs of an expanding pool of beneficiaries. Meeting these 
demands will help older Americans live not just longer lives, but 
healthier ones.
Long-term care
    America's aging population, which continues to increase, needs 
better long-term care. Our budget addresses this need with a multi-
faceted initiative to help the five million Americans who require long-
term care and to those who care for them.
    Studies show that those who need long-term care prefer to remain in 
their own homes and communities rather than receive care in nursing 
homes or other institutional settings. The majority of caregivers are 
women, and one-third have full time jobs. Sadly, research shows that 
rates of depression among caregivers are significantly higher than 
those of non-caregivers of the same age. We must assist these 
caregivers in their difficult task.
    Our budget invests $125 million in fiscal year 2000 for a new 
National Family Caregiver Support program in the Administration on 
Aging to assist approximately 250,000 families nationwide who are 
caring for elderly relatives with chronic diseases and disabilities. 
This investment will enable states to create comprehensive support 
systems that provide a range of community-based services to caregivers, 
including quality respite care, information about local services, 
counseling, and training for complex care needs.
    Our budget also provides seniors, as well as younger Medicare 
beneficiaries, with critical information to help them better understand 
their long-term care options. We have requested $10 million for a 
national Medicare information campaign to provide Medicare 
beneficiaries of all ages with information on the long-term care 
coverage available under Medicare and Medicaid, private insurance 
options, and community-care services. The budget also expands access to 
home and community-based care services to people of all ages with 
significant disabilities by allowing states to provide Medicaid 
coverage to people with incomes up to 300 percent of the federal SSI 
level who need nursing home care but choose to live in the community. 
This new Medicaid option will help make eligibility for nursing homes 
and community based services more comparable and eliminate one of the 
sources of Medicaid's ``institutional bias.'' This long-tem care 
initiative also includes policies from other Departments, including a 
tax credit to compensate for the cost of long-term care services; 
providing the Federal government with the authority to offer private 
long-term care insurance to its employees at group rates; and an 
innovative housing initiative to create and integrate assisted living 
facilities and Medicaid home and community based care.
Nursing home quality initiative
    While we develop the means to support those who receive long term-
care in home and community-based settings, we must also continue to 
ensure that those in nursing homes and institutional settings are 
getting the quality care they deserve. Last summer, the President 
announced an initiative to strengthen enforcement and oversight of 
nursing home quality and to crack down on those who repeatedly violate 
program standards. While key provisions of this initiative are already 
being implemented, this year's budget will provide the $60.1 million 
needed to complete implementation of these provisions. Funds will 
support increased state surveys of nursing homes, Federal oversight and 
development of a national criminal abuse registry to screen potential 
employees, as well as the costs of the additional litigation and 
appeals that result from stepped-up enforcement efforts.
Reforming HCFA management and combating medicare fraud, waste, and 
        abuse
    As steward for some of the most important programs for our elders, 
the Health Care Financing Administration faces the daunting challenge 
of reorganizing and modernizing while at the same time meeting pressing 
statutory deadlines for program changes mandated in the Balanced Budget 
Act (BBA) and the Health Insurance Portability and Accountability Act 
(HIPAA). HCFA must be highly sensitive to the needs of its customers as 
it undertakes these reforms. While HCFA's recent reorganization has 
made some progress in achieving the necessary changes, more needs to be 
done. The President's budget outlines a five-part reform plan that will 
increase HCFA's administrative flexibility while also enhancing 
accountability, thereby enabling HCFA to be responsive to its customers 
and serve as a more prudent purchaser of health care. As HCFA begins to 
accomplish the basic objectives of these reforms, we will also begin 
reviewing legislative proposals to increase the stability of HCFA's 
funding in the future.
    While we pursue our efforts to strengthen HCFA management, we also 
will continue our fight against fraud, waste, and abuse in the Medicare 
program. Since 1993, the government has increased prosecutions for 
health care fraud by over 60 percent and increased convictions by 40 
percent, and I would like to thank the Subcommittee for supporting 
these efforts so strongly. This budget continues the fight by providing 
$864 million for the Medicare Integrity Program and the Health Care 
Fraud and Abuse Control Account, which support the efforts of both HHS 
and the Department of Justice in fighting fraud and abuse. It also 
includes proposals to spend Medicare dollars more wisely by eliminating 
the overpayment for Epogen and excessive mark-ups for outpatient drugs, 
requiring private insurance companies to provide secondary payer 
information, reducing the misuse of partial hospitalization services, 
and making ``Centers of Excellence'' a permanent part of the Medicare 
program. In total, these programs will save an estimated $240 million 
in fiscal year 2000 and $2.9 billion over the next five years.
     quality, affordable health care for america's working families
    Today, too many people are denied the benefits of health 
breakthroughs because they lack insurance or access to care. We must 
take steps to ensure that in the new millennium our health care 
delivery system keeps pace with advances in medical science and 
provides high quality and affordable health care to every American 
family. To do so, our budget expands access to health care and health 
insurance, particularly for our most vulnerable populations.
Increasing access to health care for uninsured individuals
    Nearly 43 million Americans lack health insurance. Many of these 
individuals receive care only sporadically in hospital emergency rooms. 
To help these people get the primary care and other services they need, 
the President is proposing a five year, $1 billion initiative to help 
communities and health care providers to develop integrated systems 
that can deliver a more coordinated array of health care services more 
efficiently to uninsured workers. This program would provide $25 
million in grants this year, and $250 million a year from 2001 to 2004, 
to assist over 100 communities in establishing the infrastructure 
necessary to develop and participate in coordinated care arrangements 
and finance additional core health services for uninsured workers 
within integrated systems of care.
Improving mental health services
    Every year approximately 44 million American adults experience some 
form of mental disorder, including 10 million who suffer serious mental 
illness. In addition, up to 4 million children ages 9 to 17 experience 
a serious emotional disturbance. Yet estimates show that less than one 
quarter of these people are treated for their disorders. Our budget 
includes $359 million for the Mental Health Block Grant, an increase of 
$70 million, to provide additional funds for states to create 
comprehensive, community based systems of care for both adults and 
children. It also provides $31 million for the Projects for Assistance 
in Transition from Homelessness (PATH) grant program, an increase of $5 
million, which will increase by approximately 13,000 the number of 
individuals served and increase the number of services provided to 
those already enrolled.
Ensuring access to AIDS therapies (Ryan White)
    We have made significant progress in the fight against HIV and 
AIDS. Due to the widespread use of combination anti-retro viral 
therapy, the AIDS death rate in 1997 was its lowest in nearly a decade. 
But the news is not all good. While the overall AIDS death rate is 
declining, the disease is exacting an excruciating toll in minority 
communities. In 1997, 47 percent of those newly diagnosed with HIV were 
African American and 20 percent were Hispanic. We must continue our 
efforts to expand access to drug therapies and improve the quality of 
care, particularly in minority communities. The President's budget 
continues the fight against HIV and AIDS by providing $1.5 billion for 
the Ryan White Program, an increase of $100 million. Included in this 
amount is an increase targeted to communities to provide state of the 
art clinical care to an additional 10,000 people living with AIDS. In 
addition, the AIDS Drug Assistance Program (ADAP) will receive a $35 
million increase to help individuals gain access to combination drug 
therapy. The budget also continues to build on the effort initiated by 
the President and this Committee to address the AIDS crisis in minority 
communities. The budget for fiscal year 2000 includes $171 million for 
special initiatives that will be specifically targeted to HIV/AIDS 
prevention, treatment, and capacity development needs within the 
African-American and other racial and ethnic minority communities.
Reducing racial health disparities
    Unfortunately, members of minority groups are often less healthy 
than Americans as a whole. Despite improvements in overall health 
outcomes, minorities continue to bear a disproportionate burden of the 
nation's disease and illness. For example, the infant mortality rate 
for African-Americans is more than twice that of Caucasians, and 
American Indian and Alaska Natives are about three times as likely to 
die from diabetes compared to other Americans. The President is 
committed to ending these racial disparities in health status, and the 
budget provides $145 million to target many other Department resources 
in the effort to provide health education, prevention, and treatment 
services targeted to minority populations.
Medicare, medicaid, and the children's health insurance program
    Our budget also includes a variety of legislative proposals to 
expand access to Medicare and Medicaid for groups that would otherwise 
be denied health insurance for any number of reasons. It allows 
Americans ages 62 to 65 to buy into Medicare by paying a premium, 
provides a buy-in option for displaced workers ages 55 to 62 who have 
lost employer-provided health coverage, and allows retirees between the 
ages of 55 and 65 whose companies have reneged on their health benefits 
to buy into their company's health plan. Another proposal would give 
states the option of providing Medicaid coverage to legal immigrant 
children, pregnant women, and certain groups of immigrants with 
disabilities who have entered the United States after the enactment of 
the welfare reform legislation in 1996.
    The Children's Health Insurance and Medicaid programs represent a 
valuable means of providing health insurance to poor children who might 
otherwise go without care. But many families are unaware that their 
children are eligible to receive care under these programs. Our budget 
will allow states to increase spending by $1.2 billion over the next 
five years on benefits and outreach and give them additional 
flexibility to expand outreach efforts through development of new and 
innovative approaches.
Making work pay for people with disabilities
    Our Budget also promotes opportunities for Americans with 
disabilities. All too often, disabled Americans are prevented from 
working by their legitimate fears of losing access to Medicaid and 
Medicare coverage once they go to work. To enable these Americans to 
work and earn a living wage, our fiscal year 2000 budget extends 
Medicare coverage, and at the option of states, Medicaid coverage, to 
working people with disabilities. This proposal also includes new 
incentives for states to help them start their programs and to link 
workers to necessary support services. Since President Clinton and Vice 
President Gore took office, the American economy has added 17.7 million 
new jobs. However, the unemployment rate among working age adults with 
disabilities is still nearly 75 percent. People with disabilities can 
bring tremendous energy and talent to the American workforce, yet 
institutional barriers often limit their ability to work. The 
President's budget proposes a historic new $2 billion initiative that 
removes significant barriers to work for people with disabilities. It 
includes the Work Incentives Improvement Act, which invests $1.2 
billion in providing options for workers with disabilities to buy into 
Medicaid and Medicare; a new $700 million investment in a $1,000 tax 
credit for workers with disabilities; and more than double the 
government's current investment, an increase of $35 million, in 
assistive technologies that make it possible for individuals with 
disabilities to work.
         making america a healthier--and a safer--place to live
    As we enter the 21st century, new threats to our public health are 
continually emerging. From the challenge of confronting infectious 
diseases, to the possibility of a bioterrorist attack and the ongoing 
problems of foodborne illness, we must constantly be vigilant. The only 
way to successfully combat the public health problems of tomorrow is by 
investing today in the necessary medical research and public health and 
disaster response infrastructure.
The international challenge of infectious diseases
    If you will permit me, Mr. Chairman, I would also like to speak 
briefly to the importance of fulfilling our commitment to support the 
World Health Organization and the work it does to improve the health of 
people throughout the world, including our own citizens.
    I recognize that funds for the WHO are appropriated to the 
Department of State through another subcommittee. But those of us 
responsible for the health of the American people need to understand 
that the WHO's ability to fulfill its mission and responsibilities can 
make a real difference in fulfilling our own public health goals. Key 
areas include the WHO's work in the surveillance and outbreak control 
of infectious diseases, headed by a distinguished American (David 
Heymann), the Tobacco Free Initiative, Roll-back Malaria, the 
elimination of polio, and the Stop TB initiative.
    International trade, commerce, and tourism have truly created a 
global village. Because infectious diseases do not recognize borders, 
it is increasingly necessary to protect the health and safety of 
American citizens by investing in a global public health strategy.
    Tuberculosis provides a striking example. In this decade, we have 
had to aggressively combat a resurgence of TB in the United States. We 
have made extraordinary progress, with the number of cases declining 
dramatically.
    New York City was among the hardest hit. Now, the only new cases 
are found among the City's immigrant population--among people who were 
exposed elsewhere.
    Working in partnership with the WHO, and providing the necessary 
resources, we can develop the global strategy that is critical to 
protecting our citizens and people around the world.
Responding to the new threat of bioterrorism
    Terrorism represents a serious threat to the peace and prosperity 
of our nation. While terrorist attacks can take numerous forms, the 
threat posed by bioterrorism is particularly deadly, because it can 
affect a large population, remain undetected for some time, and cause 
secondary illness or death if the agent is communicable. As the lead 
federal agency responsible for preparing for and responding to the 
medical and public health consequences of a bioterrorist event, we are 
mounting a comprehensive public health effort to combat this deadly 
threat.
    The President's Budget includes $230 million for the Department to 
undertake a coordinated, four-pronged initiative to prepare for the 
medical needs and health consequences resulting from a potential 
terrorist use of biological weapons. First, our budget invests in the 
infectious disease surveillance infrastructure needed to detect the 
occurrence of a bioterrorist attack and to determine its cause, 
including improvements in case reporting, epidemiological and 
laboratory capacity, and the development of information technology to 
allow coordination among Federal, State and local public health 
officials. Second, it funds the purchase of a stockpile of the vaccines 
needed to treat the most likely biological agents. Third, the budget 
invests in developing the medical response capability at the local 
level to respond to an outbreak by training local health providers and 
supporting the creation of 25 Metropolitan Medical Response Systems. 
Finally, it provides funds for research and development activities to 
develop and expedite review of new vaccines and therapeutics and new 
rapid screens for diagnosing chemical agents.
Creating superior public health surveillance and food safety
    Our nation needs a high quality surveillance system to collect and 
analyze epidemiologic information if we are to be able to respond 
effectively to a future outbreak of disease. The President's budget 
proposes to strengthen our surveillance system by providing a total of 
$65 million to support the implementation of a National Electronic 
Disease Surveillance Network Initiative (NEDSNI) at the Centers for 
Disease Control. This Initiative would integrate electronic 
communications related to surveillance for the Emerging Infectious 
Diseases ($15 million), Bioterrorism ($40 million), and Food Safety 
($10 million) programs and will establish communication links with the 
public health and medical communities to enable them to furnish timely 
information on outbreaks of communicable diseases to State and local 
public health departments and assure better communications among public 
health entities.
    Surveillance is just one of the keys to fighting outbreaks of 
foodborne illness. Food-related hazards are responsible for as many as 
33 million illnesses and up to 9,000 deaths each year. To combat these 
outbreaks, the budget seeks $29.5 million for the CDC, a $10 million 
increase, to expand the PulseNet network of health labs which preform 
DNA ``fingerprinting'' of disease causing bacteria. In addition, FDA is 
seeking $79 million to support its food safety efforts.
Expanding medical and health care quality research
    Biomedical research has been the foundation of the unprecedented 
gains we have made in improving the health of both Americans and the 
world. Last year, the President made a commitment to increase the 
budget for the National Institutes of Health, the world's largest and 
most distinguished organization for biomedical research, by nearly 50 
percent over five years, and this Committee responded by passing an 
increase of almost $2 billion. This year's budget continues the 
President's commitment and keeps us on the path set last year with an 
investment of $15.9 billion, an increase of $320 million. The fiscal 
year 2000 request, combined with last year's 14.6 percent increase, 
represents a 17 percent increase over two years. This year's request 
will enable NIH to fund nearly 30,000 research projects grants, the 
highest total in history.
    Along with his commitment to increase funding for biomedical 
research, the President last year also made a commitment to ensuring 
that scientific advances are translated into better health care for the 
American people. The President's budget honors this commitment as well, 
providing an increase of $35 million for the Agency for Health Care 
Policy and Research. These funds will be spent on health care research 
that will enhance knowledge about how to improve outcomes and quality 
of medical treatment and how to best translate research results into 
daily practice to improve health care for all Americans.
               the right to a safe and healthy childhood
    Mr. Chairman, the health investments that I have outlined are 
critical to meeting the challenges that will confront us in the next 
century. But we must also invest now in what will undoubtedly be our 
greatest natural resource in the new century, our children.
Curtailing youth smoking
    Last year's settlement of the State tobacco lawsuits affirmed the 
responsibility of the tobacco industry to pay for health care costs 
associated with smoking. While this agreement was a step in the right 
direction, there is more that needs to be done to preserve the public 
health--and to protect our children from the dangers of smoking. It is 
horrifying to think that over 400,000 deaths each year are due to 
cancer, respiratory illness, heart disease and other smoking-related 
illness. It is even more horrifying that three thousand young people 
will begin smoking each day, and one thousand of them will die earlier 
than they should as a result of smoking.
    Our budget reaffirms our commitment to combat smoking among the 
nation's youth. First, the President has proposed raising the price of 
a pack of cigarettes by 55 cents to reduce teen smoking. The budget 
also includes $101 million, an increase of $27 million, to expand the 
Center for Disease Control's support for State tobacco control 
programs. The budget also provides $68 million for the Food and Drug 
Administration to support outreach and enforcement activities to 
curtail youth smoking, an increase of $34 million.
    Last year, after extensive negotiations, the states' Attorneys 
General reached a settlement with the tobacco companies that was based 
in part on recovering the medical costs of those with tobacco-related 
diseases. Since U.S. taxpayers paid a substantial portion of the 
Medicaid costs that were the basis for much of the state settlement 
with the tobacco companies, federal law requires that the federal 
government recoup its share. However, the Administration will work with 
the states and the Congress to enact legislation that, among other 
things, resolves these Federal claims in exchange for a commitment by 
the states to use tobacco money to support shared national and state 
priorities which reduce youth smoking, promote public health and 
children's programs, and assist affected rural communities.
Promoting childhood immunizations
    The most cost-effective way to prevent infectious disease among 
young people is to immunize every child. As a result of the 
Administration's Childhood Immunization Initiative, the nation exceeded 
its childhood vaccination coverage goals, with over 90 percent of 
America's toddlers receiving each basic childhood vaccine. Thanks to 
these efforts, the incidence of vaccine-preventable diseases such as 
diphtheria, tetanus, measles, and polio are at all-time lows.
    The President's budget provides a total of $1.1 billion for 
childhood immunization, including $526 million in discretionary 
funding, an increase of $77 million over last year. These funds will 
allow the program to provide all the vaccines recommended by the 
Advisory Committee on Immunization Practices, including vaccines for 
rotavirus and catch-up vaccinations for hepatitis B. The budget also 
includes $99 million for global polio and measles eradication, an 
increase of $17 million, to support the efforts of the World Health 
Organization to eliminate polio throughout the world by the year 2000.
Advancing innovative treatments for asthma
    Over the past 15 years, the number of Americans afflicted with 
asthma has doubled to approximately 15 million, with the sharpest 
increase in rates among children under age 5. Asthma is one of the 
leading causes of school absenteeism, and often results in limitations 
in activity and disruption of family routines. To begin to arrest this 
growing epidemic, our budget proposes $50 million in demonstration 
grants to states to test innovative asthma disease management 
techniques, derived in large part from NIH-funded research, for 
children enrolled in Medicaid and CHIP. Participating States will 
measure success in reducing asthma related incidents such as emergency 
room visits and length of hospital stays.
Ensuring continued educational excellence in the nation's children's 
        hospitals
    Expertly trained pediatricians are a critical ingredient to keeping 
children healthy. Children's hospitals play an essential role in the 
education of the nation's physicians, training 25 percent of all 
pediatricians and more than half of many pediatric sub-specialties. To 
support the vital efforts that children's hospitals play in training 
physicians, our budget includes $40 million to provide financial 
assistance to support graduate medical education at free standing 
children's hospitals.
Making child care safe, reliable, and affordable
    In millions of American families, both parents must work to support 
their children. In millions of others, single parents must work doubly 
hard to maintain family income. This Administration, working together 
with the Congress, has taken numerous steps to support families of all 
types, ranging from the Earned Income and Child Tax Credits to the 
Family and Medical Leave Act and the Children's Health Insurance 
Program. The next step we must take is to help all parents find child 
care that is safe, reliable, and affordable. This is not only important 
as a way to support the needs of working families. Safe, quality child 
care is essential to the healthy development of our children. Study 
after study provides evidence that investments in quality care can have 
major benefits for children, their families, and our society.
    Let me thank you for having made a down-payment towards the 
President's child care initiative with $173 million in quality funds 
and $10 million for child care related research. The President's fiscal 
year 2000 budget again includes a requested increase of $10.5 billion 
in mandatory funding over five years for child care programs in HHS, as 
well as critical increases in the Departments of Treasury and 
Education. These additional funds will dramatically expand the 
availability of safe and affordable child care for working families, as 
well as improve early learning and the quality and safety of child 
care. The Child Care and Development Block Grant was used to serve 1.25 
million children in 1997. With these additional funds, we are committed 
to increasing the number of children served by more than one million by 
2004.
Enhancing head start
    Head Start has been and will continue to be one of the 
Administration's top priorities. This program has been successful in 
ensuring that low-income children start school ready to learn. Since 
1993, enrollment in Head Start has grown by 17 percent. The President's 
budget invests $5.3 billion, an increase of $607 million, to allow Head 
Start to serve an additional 42,000 children, bringing the total number 
of children served to 877,000 and moving forward on our commitment to 
enroll one million children by 2002. Consistent with last year's Head 
Start reauthorization, our budget provides funds to improve program 
quality, enhance staff development, and reduce staff turnover. This 
request includes over $420 million for the Early Head Start program, 
which will provide almost 45,000 infants and toddlers and their 
families with early, continuous, intensive, and comprehensive child 
development and family support services.
Curtailing violence against women
    Each year an estimated 2.1 million women are raped or physically 
assaulted in this country. The President's budget provides $218 
million, an increase of $28 million, to combat this serious problem 
that affects families across our nation. This includes $102 million for 
the Grants for Battered Women Shelters program, which will provide 
approximately 40,000 survivors of domestic violence and sexual assault 
with counseling, shelter, and other services. Funds will also be 
targeted to activities designed to change the social norms that condone 
violence against women.
                management improvements and innovations
    Managing the complex problems that will confront us in the 21st 
century requires the development of innovative management strategies 
that enhance productivity while promoting accountability. We have and 
will continue to work closely with the Congress and this Subcommittee 
to develop management reforms that allow us to put every dollar to 
efficient and effective use.
Y2K
    As this Committee is well aware, I have taken the Year 2000 
millennium problem (Y2K) very seriously. In fact, in September 1998, I 
informed all of the HHS Operating Division heads that Y2K was this 
Department's ``Job No. 1''. With your agreement, I redirected $42 
million from other HHS activities to ensure that HCFA had the funds it 
needed for Medicare contractor renovations. As a Department we have 
engaged in a series of strong administrative actions, undertaken a 
comprehensive review of our funding needs to ensure millennium 
compliance, and encouraged staff throughout the Department to work 
diligently to see that our equipment, facilities and systems are all 
Y2K OK. Although I cannot declare total victory today, I can assure you 
that 85 percent of our mission critical systems are now Year 2000 
compliant and I expect the remainder to be fully compliant within the 
next couple of months. While this part of the work will be completed 
prior to fiscal year 2000, we must not relax our efforts, and we must 
continue our work on other Y2K activities including outreach to 
communities, infrastructure and biomedical equipment remediation, and 
business continuity and contingency planning. It will take continued, 
intense efforts, working together with our colleagues in State and 
local governments and our public and private partners, to overcome this 
daunting challenge. We cannot allow the millennium bug to impair our 
mission or disrupt our services to the American people. Therefore, as 
part of the fiscal year 2000 budget, I am requesting $165 million to 
ensure that all of our systems are Y2K ready.
GPRA
    Our budget submission also includes HHS' fiscal year 2000 GPRA 
performance plans. We have been working hard to improve our performance 
plans and our GPRA process within the Department. Our plans are much 
better than the first set of GPRA plans we submitted last year. They 
reflect increased involvement of senior staff, increased consultation 
with our partners, clearer linkages with the Strategic Plan, and the 
refinement of measures, baselines and targets. Still, there are several 
significant challenges facing HHS in GPRA performance measurement. We 
continue to work toward the increased use of outcome measures, to 
confront complex data issues, and to work closely with our partners and 
stakeholders in the development of performance goals and measures. We 
are confident that our GPRA performance plans for fiscal year 2000 are 
sound ones and we look forward to continued discussions with the 
Congress on our plans.
                           the moment is now
    Mr. Chairman, I have put before you today a blueprint for preparing 
our health and social service systems to meet the challenges of the new 
millennium. The goals of making health and happiness the defining 
characteristic of our seniors' retirement, of providing a better future 
for our children, and of enabling all Americans to live longer and 
healthier lives are ones that we all share. And like you, I am 
committed to achieving these goals while maintaining the balanced 
budget discipline we have all worked so hard to create.
    Chairman Specter, Senator Harkin, and members of the subcommittee: 
I appreciate the support you have provided us in the past and I look 
forward to working with all of you to meet the challenges before us in 
this budget. We have much to accomplish, and no time to waste.

                             Budget Request

    Senator Specter. We will proceed now, in accordance with 
the practice of the subcommittee, on 5-minute rounds.
    Secretary Shalala, our very able staff has prepared two 
charts which show $18 billion in offsets which are highly 
speculative, to put it very, very mildly. Last year when you 
testified there were similar offsets and, not unexpectedly, 
they did not materialize. When we finally came to terms with 
the funding for your subcommittee, for your Department and the 
other Departments under the jurisdiction of this subcommittee, 
very substantial funds were added in October in a very, very 
unsatisfactory way.
    I have already been discussing with the Majority Leader the 
possibility of starting----
    [The lights go out.]
    I just mentioned the Majority Leader's name. [Laughter.] 
[Lights return.]
    Secretary Shalala. I think you were making the point that 
we do not want to do the budget again in the dark, the way we 
did last year.
    Senator Specter. Well, that is a good comment.
    The effort will be made by this subcommittee to have this 
bill taken up early on, perhaps even first, reversing the 
procedures in the past where we leave the toughest for last, 
and perhaps start with the toughest first. The total 
discretionary funding this year is $581 billion. The requested 
level by the administration goes up to $592 billion, which 
accommodates inflation, but really not much more. The spending 
caps are at $574 billion. So what we have in effect is $18 
billion in offsets which are really totally unrealistic.
    I understand that the budget is prepared by OMB and the 
White House in a very complex way, so I'm not going to spend 
any time with the limited 5 minutes I have on this round in 
debating that with you. But what I would like you to do is to 
tell me, if these $18 billion are not materialized and the 
share of your Department is $2.7 billion, what will you cut? It 
sounds good to talk about more Head Start money, which this 
subcommittee has recommended, and immunization and treatment of 
asthma, but I would like your expertise on what you cut if we 
are looking at a budget with $2.7 billion less.
    I would ask yet that the administration consider a 
leadership role in urging that the budget cap be lifted. You 
come up with $592 billion in discretionary funds, not very 
high. But that is really what we are going to be looking at. So 
without taking the time now, I would like you to tell me in 
writing which $2.7 billion you would cut.
    [The information follows:]

    Let me emphasize that all of these increases are paid for. In 
preparing our fiscal year 2000 budget, we worked hard to find ways to 
pay for our initiatives without spending the surplus. Thus, all of our 
discretionary spending increases are offset by revenue increases or 
other offsets.
    Many of the mandatory reductions we have proposed not only save 
money but are specifically designed to reduce fraud, waste, and abuse, 
particularly in the Medicare program. Overall, since many of the 
mandatory reductions in the budget are in HHS programs, in some 
respects it is only natural that these reductions offset increases in 
the Department's discretionary spending, though as I have noted there 
are no direct relationships between these reductions and our 
discretionary request.
    We look forward to working with the members of the subcommittee and 
the authorizing Committees to see that the offsets we have proposed are 
enacted, thereby making additional resources available to the 
subcommittee. These offsets will require enactment of statutory 
language.

                           Stem Cell Research

    Senator Specter. Let me move to, very briefly, this very 
contentious issue on stem cell research, where we have the 
opinion of your general counsel, and the stage having been set 
where the appropriations bill which came out of this 
subcommittee, since January 1966 Congress has included the 
prohibition against the creation of human embryo or embryos for 
research purposes or research in which a human embryo or 
embryos are destroyed.
    We already have your opinion of counsel that private funds 
are being used to extract the stem cells from the embryos, so 
that NIH funding is not being used on the destruction of 
embryos. We had a major battle a few years back on fetal tissue 
and there is now no limitation on research on fetal tissue if 
the abortion was not induced for the purpose of providing the 
tissue.
    My yellow light is on, so my question to you is what would 
your recommendation be as to a possible revision of the bill to 
avoid ambiguity or legal interpretations where you have these 
human embryos which are not being used for conception, but are 
excess and are being discarded? So by analogy to saying you can 
use fetal tissue if it is not created and abortion is performed 
for fetal tissue, similarly that research could be done with 
NIH funding on embryos, even if embryo destruction, so long as 
these are excess embryos, not to be considered for human life.
    Secretary Shalala. Senator, I think that what we have said 
in submitting the General Counsel's opinion is that we do not 
believe that a change in the law is necessary. Let me say that 
we believe that the General Counsel's opinion is consistent 
with current law, that we will continue to rigorously enforce 
the congressional prohibition on funding for human embryo 
research. But as the General Counsel has pointed out quite 
carefully, the law allows the kind of stem cell research that 
you are talking about and the promise of this research is 
extraordinary.
    Let me also say to you that we are very much aware--and the 
scientists behind me can speak with far more eloquence--of the 
difficult ethical and social issues that are involved with this 
research, and we intend to move forward in a careful and 
deliberate fashion after broad consultation with the Congress 
and with the bioethical and research community. But the promise 
of this research is extraordinary.
    We will not move forward with funding until we have 
rigorous guidelines and until we have an oversight process in 
place. But the promise of this research for the treatment for 
diabetes, for Parkinson's, for Burton's, for strokes, and for 
many other medical conditions is just extraordinary, and we 
believe that we are acting within the law.
    Senator Specter. Thank you very much, Madam Secretary.
    I yield now to our distinguished ranking member for his 
opening statement and a round of questions. We will put your 
green light up, Senator Harkin, when you finish your opening 
statement.
    Secretary Shalala. The lights may go off.

                opening statement of Senator Tom Harkin

    Senator Harkin. I appreciate it. Thank you, Mr. Chairman. I 
will just ask that my statement be made a part of the record.
    Senator Specter. It will be in full.
    [The statement follows:]
                Prepared Statement of Senator Tom Harkin
    It's a pleasure to welcome Secretary Shalala today to testify about 
the Administration's fiscal year 2000 budget. I found a number of your 
new initiatives very interesting--but I was very disappointed in the 
increase the budget requests for medical research.
    Last year, this subcommittee was able to provide a record $2 
billion increase for NIH--setting a course to double NIH funding in 
five years. The President's request of an increase of just 2.1 percent 
doesn't even keep up with medical inflation, let alone continue us on 
the path of doubling NIH over 5 years. It is a major retreat in the 
march for medical breakthroughs.
    The opportunities are out there, the potential is great. But we 
have to commit the resources to get the job done.
    I was pleased to see that the Administration has requested a 
substantial increase for the Head Start program. The evidence is very 
clear that we need to reach children when they are very young. I see 
that, under the President's budget, over $420 million will be available 
for the Early Head Start program, which targets children from birth to 
three years old. Investing in children when they are young will pay off 
in the long-run.
    I also want to commend Secretary Shalala on the results of the 
annual Medicare audit which found that losses due to fraud, waste and 
abuse have been cut in half from 1996 to 1998. The audit found that 7.1 
percent of Medicare payments, or $12.6 billion were lost to fraud, 
waste or abuse. This is encouraging but this is no time for a victory 
lap. The additional tools that the Congress has finally begun to pay 
off but there is still too much waste in Medicare.
    Secretary Shalala, I understand that you will be speaking to senior 
citizens across the county tomorrow about how to decipher their 
Medicare statements and ferret out fraud. I am glad to hear that--we 
have been encouraging you to do just this for a long time. In fact, 
last year we provided $7 million to your department to create ``senior 
waste patrols'' of retired nurses, doctors, billing clerks and others 
to train fellow retirees in local communities to better detect and 
report Medicare fraud and abuse. You joined me in Iowa in 1996 to 
launch this idea. The senior patrols have been up and running for 2 
years in 12 states and have been quite successful.
    I am also very pleased to see that the budget includes increased 
funding for food safety, in particular, additional funding for 
surveillance and upgrades to labs to expand the network of health labs 
which perform DNA fingerprinting of disease causing bacteria allowing 
to connect illnesses with specific foods.
    And finally, Madame Secretary, I want to thank your working with us 
on a number of other important initiatives--including fighting the 
methamphetamine problem in Iowa and elsewhere, and projects to support 
our Iowa community health centers and rural hospitals.
    Thank you, Mr. Chairman--and I look forward to hearing from our 
witness.

                               nih budget

    Senator Harkin. I apologize for being late.
    Madam Secretary, again thank you for your leadership. I had 
a chance to look at your statement and I appreciate your kind 
remarks on my behalf. A couple of things.
    I am sure that we all agree, at least up here, that the NIH 
budget is woefully inadequate. The 2.1-percent increase has got 
to be raised and hopefully we are going to find some way to do 
it. I do not know how, but that needs to be addressed.
    Senator Specter. Senator Harkin, before you came in I made 
a suggestion that the administration take the lead in raising 
the budget cap or making the recommendation. We have $18 
billion in offsets which are illusory, and the question I asked 
the Secretary, if their share would be $2.7 billion, what would 
they cut? We really ought to face it head-on at the outset with 
what the budget caps ought to be.
    Senator Harkin. I appreciate that, Mr. Chairman. I would be 
willing to work with you on that. But I also must tell you that 
I am a little dismayed that we cannot find the money to meet 
the research and health needs of our people, but we can find 
more money for re-invigorating a Star Wars program that I 
thought we had tubed a long time ago.
    I remember when Senator Hatfield left the Senate a couple 
of years ago and in his final statement he said: No longer is 
it the Russians are coming, the Russians are coming. He said: 
The viruses are coming, the viruses are coming. That has always 
stuck in my head, and for the life of me I do not understand 
why this budget is skewed in the opposite direction.
    So I think on both ends we could work together on this.
    Madam Secretary, I do want to thank you and compliment you 
for the substantial increase in the Head Start program, 
especially the Early Head Start program, the birth to 3, $420 
million available for that, and I think that is a great 
investment. I compliment you for doing that.
    Again, I want to commend you on the results of the Medicare 
audit that found that the fraud, waste, and abuse had been cut 
in half in the last couple of years. That is great progress. 
Thank you so much for what you are doing in that regard.
    The senior waste patrols I guess are out there. We are 
going to take that nationwide. If you remember, Madam 
Secretary, you and I, you helped launch this with me a couple 
of years ago, 2 or 3 years ago, I forget what it was, and it 
seems to be pretty successful in the 12 States that we have had 
it, and now we are going nationwide with it.
    The budget increases funding for food safety. Again, some 
of us have legislation pending from the last Congress, 
reintroducing it again this year, on the food safety program. 
Of course, your Department will have a great deal to do with 
that. So I am pleased that your budget increases some funding 
for surveillance and upgrade of the labs that are necessary to 
ensure that our food supply is adequate and safe.
    Since I was late, I will forego any questions and I will 
let you go ahead with others.
    Senator Specter. Thank you very much, Senator Harkin.
    We have been joined by our distinguished chairman of the 
full committee, Senator Stevens.
    Senator Stevens. Thank you very much. I would be happy to 
wait my time. I know that others were here first.
    Senator Specter. Well, we always defer to the chairman, 
Senator Stevens. But it is your call.
    Senator Stevens. I still wait my time.
    Senator Specter. OK.
    We turn now to Senator Feinstein, who was early bird. 
Senator Feinstein.

             opening statement of Senator Dianne Feinstein

    Senator Feinstein. Thank you very much, Mr. Chairman.
    I wanted to confine my questions, if I could, Secretary 
Shalala, to a number of areas. But let me just begin by saying 
that I agree with Senator Harkin on the cancer research, 2.1 
percent, and I really decry the fact that it is as low as it 
is. I might say, as one who has been active in this area, that 
it came as some surprise. So I would be hopeful that we would 
be able to find a way to increase that amount.
    If I can, I would like to ask a question on the FEMAT and 
the census undercount. For the period of 1990 to 1998, in 
California the Census Bureau has estimated a net out-migration 
of 13,000, while California's data indicates a net in-migration 
of more than 755,000, an enormous discrepancy in counting. I 
would like to ask what HHS might be able to do to provide some 
flexibility in achieving more accurate data, such as using 
figures generated by the Department of Finance in determining 
the FEMAT for California's Medicaid program.
    Secretary Shalala. Senator Feinstein, thank you for that 
question. I met with your new Governor, Governor Davis, 
yesterday and had what I thought was a very thoughtful 
conversation on this issue.
    When the program was set up--and this is how we distribute 
resources and how we reimburse States--it was built on the 
census, so that every State had their data coming from the same 
source. What you are pointing out is that, if the census comes 
every 10 years and there are huge shifts within a State, that 
State is underfunded often because of that, and some States may 
be overfunded, depending on what has happened to their 
population.
    The difficulty here is that we need a source of data that 
is fair to each of the States. We are going back to take a 
look, does the Secretary have any discretion in this area? We 
have to look at the statute to see. But if I do have discretion 
in that area, do I need to go back and offer every other State 
an opportunity to look at the same new data and make 
adjustments there?
    Third, within the balanced budget, as I pointed out to the 
very distinguished new Governor of California and his staff 
yesterday, if we change the formula for one State that means 
that we need to take money from another State, because within 
the balanced budget I would have to identify an offset or 
simply re-jigger the formula for everybody.
    I do not have a clear answer. We are going to look at the 
statute. I understand the problem. But again, it is the issue 
of whether our laws allow us to be nimble enough to respond to 
population changes or whether we are locked in because we have 
certain data sets, so that a State actually has to wait for the 
new census.
    We have throughout the history of this administration 
increasingly tried to get more flexibility so we could be more 
responsive when there were changes. But I do not know the 
answer to the question about whether we can. We certainly are 
going to look, but we have to look in a way so that it is fair 
to all the States.
    Senator Feinstein. Thank you very much, and I would like to 
work with you in that regard because I am very concerned.
    Secretary Shalala. We would be happy to work with you.
    Senator Feinstein. Another area that I am very concerned, 
and the reason I voted against the welfare bill was the two-
parent work requirement. As you know, California this year 
faces a penalty of $7 million, but by 2002 that penalty is 
going to be $770 million. It is huge in its impact on the 
grant.
    Only 24.5 percent of two-parent families in California met 
the work requirement, as opposed to the 68 percent required by 
law. My understanding is that 16 other States have not also met 
that work requirement. So the penalty is going to be enormous.
    The question I would like to ask is is there any view of 
the Department with respect to a penalty waiver from California 
and other States that fail to meet this. I wrote an op-ed piece 
which was carried in Sunday's Los Angeles Times, sort of 
sending a warning to the State of what is faced, because if we 
face this--the welfare bill is back-loaded and if we face that 
kind of penalty, the impact on the State is going to be 
enormous.
    Secretary Shalala. Senator, again, last year the 
authorizing committees who authorized the welfare bill took a 
look at the penalties in this area and in fact made them more 
realistic. What California is facing now, you should have seen 
the penalties before. They were basically dropping bombs, they 
were so strong. So the penalties were made more realistic.
    We understand California's problem is the size of the two-
parent families that are aided. Again, I have indicated that I 
am prepared to take a look at it. But again, looking at what 
authority we have and whether we can do as part of the penalty 
structure some kind of a work-out. The new administration in 
California is faced with a failure to get on this issue.
    Again, for each of these States we believe they ought to be 
held accountable and there ought to be reasonable penalties. 
But we also believe that as part of our effort to make sure 
they keep making progress that we may have to do some work-
outs. But we are going to look at it, see what authority we 
have. But I cannot promise anything. Congress did review it 
last year and thought they put in place the more realistic 
penalties. They were very much aware of what the numbers were 
and what States were in trouble at that time.

                           prepared statement

    Senator Feinstein. Thank you very much.
    I see, Mr. Chairman, my time is up. I have a statement that 
I would like to have inserted into the record at this point.
    Senator Specter. Thank you, Senator Feinstein, and we 
welcome you to the subcommittee and back to the Appropriations 
Committee----
    Senator Feinstein. Thank you very much.
    Senator Specter. Your statement will be inserted into the 
record at this point.
    [The statement follows:]
             Prepared Statement of Senator Dianne Feinstein
    Welcome to the Subcommittee, Secretary Shalala. It is a pleasure to 
see you here, and I am looking forward to working with you this year to 
address the many pressing needs that are the responsibility of your 
department.
    Your fiscal year 2000 budget has some bright spots.
    First, in proposing to increase the cigarette tax by 55 cents a 
pack, the Administration has taken a commendable step toward reducing 
the number of American smokers and alleviating the costs of treating 
those who presently suffer from smoking-related illness. Everyday 3,000 
young people become regular smokers. Every year almost half a million 
people die from smoking. The CDC estimates that smoking costs $50 
billion every year, and part of these costs are covered by the federal 
government through programs such as Medicare, Medicaid, the Veterans' 
Administration, and the federal employees' health insurance program. I 
hope you will help us provide the Food and Drug Administration with 
clear, comprehensive jurisdiction over tobacco.
    Your Medicare cancer clinical trials initiative also is welcomed. 
Paying the routine health care costs of participating in clinical 
trials can bring us tremendous advances. Moreover, testimony before the 
Senate Cancer Coalition by patient advocacy groups and the research 
community over and over again has indicated that only 2 to 3 percent of 
eligible cancer patients, for example, are enrolled in clinical trials.
    The Administration's budget contains a needed $1.4 billion for a 
five-year effort to improve enrollment in the Children's Health 
Insurance Program. Compared with a national rate of 15 percent, 
California, at 19 percent, has one of the highest uninsured rates in 
the country among children, and enrollment in CHIP in California has 
lagged. And as I have written you previously, I remain disappointed in 
your department's position that children in the 24 states that have 
established private or ``combination'' public-private CHIP plans are no 
longer eligible to receive vaccines under the federal Vaccines for 
Children Program.
    As you well know, the population is aging. With age comes more 
illness and disability and thus greater need for health care services, 
and we need to fill in this major gap in our health insurance system 
and provide long-term care. Your budget presents some needed new 
initiatives.
    Last, the $230 million request for the Department's new 4-pronged 
effort to prepare for terrorist use of biological weapons is a critical 
expenditure. In California, for example, there has been rash of 
threatened releases of biological agents such as anthrax at schools, 
businesses and courthouses. We need help in understanding and preparing 
for these threats.
    Yet despite these excellent initiatives, there are some 
disappointments, and I must especially express my disappointment in the 
Administration's small increase in funding for the National Institutes 
of Health. On February 2, I wrote the President to point out that the 
2.1-percent increase in this budget is far short of the 15 percent 
needed to double funding over 5 years. Since that time, the National 
Cancer Advisory Board has said that this budget request will 
``seriously damage the National Cancer Program'' and that the National 
Cancer Institute would fund 10 percent fewer research project grants 
under this request. Given that the biomedical inflation rate in 1998 
was 3.3 percent, it seems to me that a 2-percent increase will not even 
keep up with inflation.
    Cancer incidence will increase by 29 percent and mortality by 25 
percent over the next 10 years due to changing demographics and aging 
of the population. Leaders of the Cancer March told the Senate Cancer 
Coalition in September that ``cancer has reached epidemic proportions 
and by 2010 it will reach staggering proportions.'' They pointed out 
that the budget of the National Cancer Institute represents 2 percent 
of the economic burden of cancer which translates to about l cent 
invested in research for each $10.00 paid in taxes.
    As the scientific community makes unprecedented strides in 
understanding diseases, their causes and treatments, I am profoundly 
disappointed in the Administration's health research budget, especially 
for cancer research. What happened to the ``War on Cancer''?
    Additionally, as you know, our nation is currently in the third 
year of welfare reform, and the early successes we experienced in 
moving families off the welfare rolls are giving way to tougher 
challenges. I saw evidence of this in December when the Department of 
Health and Human Services announced that California and 16 other states 
failed to meet the two-parent work requirement under the Temporary 
Assistance to Needy Families program. In addition, signs are growing 
that federal child care subsidies for families on TANF will soon fall 
far short of demand.
    As welfare reform implementation continues, we must provide states 
with sufficient resources to successfully move families from welfare to 
work. We must also ensure that HHS is implementing the welfare reform 
law flexibly, with an eye toward helping states succeed rather than 
penalizing them for failure to attain rigid work requirements. TANF and 
child care issues will be a major priority for me this year.
    Our nation is facing many other problems that need attention.
    An estimated 43 million Americans have no insurance, and 
California's uninsured rate is the 4th highest in the country. How can 
we address the health needs of America's burgeoning uninsured 
population?
    Medicare faces bankruptcy. How will we get it on a firm financial 
footing?
    While the death rate is declining and we have made great strides in 
treating AIDS, giving hope to people who formerly had little, AIDS 
incidence and deaths fall disproportionately on minorities. For 
example, African Americans, who comprise 12.7 percent of the U.S. 
population, account for nearly 60 percent of all new AIDS cases. And 
while the AIDS drug ``cocktails'' are effective for some people, they 
are unaffordable for many.
    Managed care is ravaging health care. Obstacles are thrown up by 
insurance companies when patients try to see their doctor. Needed 
treatments are arbitrarily labeled ``cosmetic'' or ``experimental.'' 
Americans have to fight faceless insurance industry accountants to get 
the health care they have paid for every month. I hope you will join me 
in working to put care back into health care.
    Again, I appreciate your coming here today, and I look forward to 
addressing these concerns in today's hearing and the coming months.

                  opening statement of Senator Jon Kyl

    Senator Specter We welcome our new member, Senator Kyl, 
both to Appropriations full and this subcommittee.
    Senator Kyl. Thank you, Mr. Chairman, and welcome, Madam 
Secretary. I appreciate the succinct summary of your long 
statement. It was very helpful. I share the chairman's concern 
about the offset issue and I am sure we will all look forward 
to your response to his questions in that regard.
    I will also have to leave in about 20 minutes or so and I 
will submit questions to you and Dr. Varmus relating to the 
stem cell research issue that might provide some additional 
guidance for us on that.
    Let me confine my questions to a bit of good news from the 
Department just last week for my State of Arizona and ask you a 
question about the future of our so-called AHCCCS program. I 
understand through John Kelly, the Director of the AHCCCS 
program, which stands for Arizona Health Care Cost Containment 
System, our Medicaid program, that the Department of Health and 
Human Services just last week approved a 1-year extension of 
the State's section 1--it's actually 1115 waiver to operate our 
Medicaid program.
    As you know, this extension enables the State to operate 
under the existing terms and conditions of the 1115 waiver. 
Arizona has operated under the waiver authority since the 
inception of the program back in 1982. During this time, AHCCCS 
has been a national leader in delivering quality care in an 
efficient manner. In fact, in a recent study AHCCCS was rated 
as one of the three most efficient Medicaid programs in the 
Nation.
    While the 1-year extension is very much appreciated, the 
AHCCCS program is unclear whether all the provisions of the 
Balanced Budget Act of 1997 will be applied to the State 
program in 2 to 3 years or whether the waiver authority will 
exempt AHCCCS from some of these provisions. There are really 
three related questions which I would like to pose to you.
    Arizona is concerned that all of the provisions of the BBA 
will apply when it seeks a renewal of the waiver in 1 year. 
Madam Secretary, how does the BBA affect existing 1115 waivers 
and the renewal process? Is it your intention that in 3 years 
all section 1115 waiver States must comply with all provisions 
in the BBA or must renegotiate their 1115 waivers? If States 
must renegotiate their waivers, will HCFA be willing to waive 
some provisions of the BBA to allow States to continue 
operating their existing programs?
    If that is all kind of catching you off guard, you are 
certainly welcome to provide information in writing as you can.
    Secretary Shalala. I will provide it in writing, and we 
have communicated. As you know, we are working with Arizona on 
this issue, and we did make an exception last time, in part 
because of Arizona's long and successful history in their 
management of the program.
    Senator Kyl. I might say, incidentally, initiated by then-
Governor Babbitt.
    Secretary Shalala. Thank you. I am sure he will appreciate 
that. Whatever we do has to be consistent for all States. That 
is the difficulty of my job. So let me say this to you: We are 
working with Arizona and we understand their concerns. While I 
always have to be concerned about precedent, I also think that 
we have to recognize successful programs when we see them. I 
will give you a detailed answer to each of those questions, but 
the context for them ought to be that we really are working 
with the State. I think it has been successful so far, but we 
have to continue that work. We have had long internal debates 
about making certain kinds of exceptions where we do have 
authority, but sometimes we just do not have the authority.
    Again, this restates my fundamental point about building 
some nimbleness in the program to be more responsive.
    Senator Kyl. In particular to programs that have been 
successful, as you pointed out.
    Secretary Shalala. Yes.
    Senator Kyl. I will look forward to your answers and to 
working with you in any way that we can to help make this 
successful program even more successful in the years to come.
    Thank you, Mr. Chairman.
    Senator Specter. Thank you very much, Senator Kyl.
    Senator Inouye.

             opening statement of Senator Daniel K. Inouye

    Senator Inouye. Thank you.
    Madam Secretary, I wish to join my colleagues in 
congratulating you on your successful war against Medicare 
fraud, waste, and abuse. However, during the recent recess, 
noting that the numbers of physicians who are now refusing to 
handle Medicare patients have increased, I had small meetings 
with physicians, and it is not professional poll-taking, but 
all of them, in response to my inquiries, suggested that it was 
not the fee schedule, but it was the fact that they had so much 
paperwork to do and they were afraid that they might be charged 
for some error.
    Do you wish to make any comment?
    Secretary Shalala. In fact I was on the phone last night 
with the President of the American Medical Association to 
reassure her. The vast majority, 99 percent, of physicians in 
this country are very honest and are trying to do the right 
thing. We think the laws are pretty clear that we have to see a 
pattern of abuse. The Inspector General, the Attorney General, 
the U.S. Attorneys are increasingly getting sensitive to the 
fact that they have to be careful. When you look at what they 
have actually done, the record is very straightforward and 
pretty clean that they are looking for patterns.
    But sometimes we send out the wrong messages. We lump 
waste, fraud, and abuse together. We are not careful in our 
language about people who have made honest mistakes in terms of 
billing errors. I think what we have to repeat is that we are 
partners with the health care professionals in this country, 
that doctors in particular are doing a wonderful job for our 
senior citizens, and that we want to be careful both in word 
and deed with how we handle our programs.
    Simultaneously, when I first came up here 7 years ago and I 
suggested--and Senator Harkin and Senator Specter will remember 
this--that we were going to wage war on our own overpayments in 
the system, on the fraud in the system, on the systemic 
underlying crime in the system, frankly, I got laughed out of 
the room, because every Secretary apparently comes up and says 
that. We put in place the most systematic, systemic oversight 
that this program has ever had. Last year Medicare grew by 1.5 
percent. Some of that is attributed to better accounting 
practices. We said to everyone: This is not an open-ended 
account. If we catch you committing real fraud, we are going to 
put you in jail, and we did. If we get overpayments, we are 
going to put it back in the trust fund.
    So, when you put together something that comprehensive, you 
look like you are overzealous, compared to where you were 
before. I think that finding the balance between reassuring the 
very fine professionals that went into medicine and into health 
for the right reasons and keeping up our rigorous oversight is 
a delicate act.
    Medical professionals have to hear over and over again from 
the highest officials in this country that we appreciate the 
work they are doing, that we care about their work. If they 
think we are acting inappropriately, they ought to tell us 
specifically. That is too long of a statement, but I think that 
your question was very important.
    Senator Inouye. I hope that message is being conveyed now.
    I have studied your long statement and also listened to 
your abbreviated statement very carefully. Is there any 
significance in leaving out violence against women?
    Secretary Shalala. No, not at all, I just assumed that I 
would get a question on that because so many members of the 
Committee are interested in that topic. As you probably know, 
this administration has taken that issue very seriously and 
this Committee has made substantial investments in battered 
women's shelters, in funding systems so that health care 
professionals are working with law enforcement and social 
service people.
    The Attorney General and I chair a major private commission 
on violence against women, basically on domestic violence. The 
private sector is very much our partner. The business community 
is increasingly getting involved in this issue, with television 
spot ads, and an 800 number that is one of the most successful 
in American history. If you call, you reach someone who will 
help you in your own community. So, I think that we have been 
rigorous and enthusiastic and have expanded the Federal 
Government's role. I appreciate the question.
    Senator Inouye. Thank you.
    Mr. Chairman, may I submit----
    Senator Specter. Yes, of course, Senator Inouye. We will 
maintain the record open until the close of business tomorrow 
for additional questions in writing.
    Senator Stevens.

                opening statement of Senator Ted Stevens

    Senator Stevens. Thank you very much.
    Madam Secretary, it is nice to see you here.
    Secretary Shalala. It is nice to see you, sir.
    Senator Stevens. My colleagues, particularly Senator 
Cochran, know I enjoy seeing you on the courts, and it is nice 
to be here with you today.
    Secretary Shalala. Tennis courts. [Laughter.]
    Senator Stevens. Tennis courts. I did not say in the 
courts. I said on.
    No other Federal department has the impact on our committee 
that yours does. Back in 1984, Defense was much higher than 
your Department, Health and Human Services. If the trend line 
had continued, Defense would be at well over $500 billion a 
year. This year it is $268 billion. Your Department is $403 
billion.
    If there is a dividend from the end of the Cold War, your 
Department has it. I think that we have to find a way to deal 
with some of the great problems in your Department, 
particularly with regard to medical research. Of all the places 
where I believe that you are being affected by tight budget 
caps, I think it is in the area of research.
    So I hope that we can work together with you in the months 
ahead to try and find some way to deal with that. I see Dr. 
Varmus is here. I am going to look forward to talking with him 
when his turn comes, but I will not address him with questions 
right now.
    I would hope that you would help me on one thing, however, 
and I will have some questions I will submit if that is all 
right. But we have run into a problem in Alaska, I am sure it 
is national, and that is in our small cities, where families 
are eligible for Federal assistance, the assistance is so 
segmented, compartmentalized, that there is a maze of Federal 
and then State programs that are Federally supported, local 
programs that are Federally supported.
    The result is there are a number of offices, even in a 
small city, where a family must go in order to try to see if 
they can get the assistance, particularly under WIC, but I 
think in terms of the whole range of programs, nutritional and 
health programs that are available for families. It means that 
they spend so much time going from office to office.
    Congress took the initiative and consolidated 80 Federal 
job training programs into one job center concept. I wanted to 
ask you if you would be willing to consider developing a pilot 
program this year to see if we could not find a way to have all 
of the family assistance programs on a one-stop basis and see 
how it would work.
    We could have a series of things that are available in some 
of those places that could actually be of great assistance to a 
family and, with some volunteers, you could also even have some 
babysitting and other kind of services available while the 
parents are taking some of the children or one of the children 
that needs assistance.
    But my staff and I--Liz Connell is here--discussed this 
with our Governor and he would like to recommend that we use 
Juneau as a pilot area to try and see if we could, using the 
job center concept, have a family center for programs coming 
out of your Department that affect families. Now, it is 
primarily, of course, of interest to people in the lower income 
areas and to some of the minority groups in these areas in our 
State.
    I would like to see if you would be willing to work that 
out and see if we can find a way. I think it would be more cost 
effective, frankly. But it certainly would be more family-
friendly than it is right now. There is sort of stigma in a 
small town to have to go to place A and then B and then C and 
then D to get the assistance that some of our people need for 
their children and for their families.
    Secretary Shalala. Senator, I would be happy to call the 
Governor and to talk this through with him and then get back to 
you. In some States they have actually combined their programs. 
As you have educated all of us, Alaska often has particular 
situations that make it more difficult to deliver services. I 
would be happy to call the Governor and take a look at what we 
could do to develop a model program there. There ought to be no 
reason why the programs cannot all be delivered in the same 
location with retrained public servants who know the programs. 
They can sit with the family and see what the families need for 
the total family and for what they are eligible.
    Senator Stevens. Well, maybe we are more impatient, 
Alaskans. We developed the same thing for the Department of the 
Interior with the Fish and Wildlife Service, the National Park 
Service, Bureau of Land Management all in one area, so it is 
one stop to deal with those land management agencies. I should 
think we ought to be able to do it with the family-related 
services that you are providing.
    Secretary Shalala. I think so, too, and we would be happy 
to work with Alaska. I will relate this conversation to the 
Governor when I call him.
    Senator Stevens. Last, I note that--and I do not want to 
talk to you at length about it--my good friend Mike Phelps, who 
was the inventor of the PET scan, is getting the Fermi Award. I 
would hope that we would find some way, if the Nation has 
recognized the value of his services in being the co-inventor 
of that magnificent system, I hope we can find some way to work 
it out so we can get HCFA to start repaying--paying for the 
cost of that service for Medicare patients.
    But I did send you a letter. I do not want to go into it 
now. I would like to have a chance to deal with you on that.
    Secretary Shalala. Thank you very much.
    Senator Stevens. Thank you very much.
    Senator Specter. Thank you very much, Senator Stevens.
    Senator Cochran.

               opening statement of Senator Thad Cochran

    Senator Cochran. Thank you, Mr. Chairman.
    Madam Secretary, thank you for letting us know the other 
day that you had approved the Mississippi health insurance 
program. That is going to be a very vital service, I think, to 
the children and families in our State.
    We also have had an opportunity recently to work with 
members of your Department in trying to identify ways to save 
some of the rural health centers, clinics, hospitals, and small 
towns who are confronting some very serious problems with 
proposed rules that are I guess going to be promulgated by the 
Department under the Balanced Budget Act, which calls for 
certain cuts to be made in health care spending, mainly in the 
outpatient service area.
    We find that these hospitals are very troubled by the 
prospect of having to eliminate a lot of their outpatient 
services and that this may result in the closure of some 
clinics and the denial of health care services to many of the 
people who live in the small towns and rural areas. I do not 
have a magic answer to the thing this morning, but we 
appreciate the members of your Department meeting with a lot of 
our providers who came up from the State to talk about this 
proposed rule just recently.
    What is your plan or if there is a suggestion to make to 
the Congress for either modifications in the law or other 
action that can be taken to ease the squeeze, the burden that 
is being placed on the small town hospitals and other 
providers?
    Secretary Shalala. Senator, we are looking now at what 
flexibility we have, because Congress gave us some flexibility. 
We noted in the rule that we were concerned about rural 
hospitals, and whether they have an accurate coding system, and 
accounting systems so they code their services correctly and 
get reimbursed appropriately. We do have some flexibility to 
protect low-volume rural hospitals in existing law. But before 
I come back to Congress to suggest that we need other changes, 
I want to make sure that we have used all the flexibility that 
we have in current law. Many people in the Department care 
deeply about rural hospitals and are putting together all the 
flexibilities we can. That is what we reported to the 
delegation that came to see us from Mississippi. Let us go 
through that review first and then we will be happy to 
communicate with the Committee if we think there are particular 
issues that involve new legislation. We are going to try to 
avoid that.
    Senator Cochran. My only other comment is to congratulate 
you for your strong support of the Head Start program. In our 
State of Mississippi that has been a very popular program, and 
in these same rural towns, small towns and rural areas, it has 
been especially helpful to students to get an early start in 
preparation for school. We appreciate the Department's budget 
request for that amount of money that you have in your budget.
    Secretary Shalala. Thank you, Senator. As you know, many 
consider Mississippi to be one of the birthplaces of Head Start 
and we are very proud of the programs and also of the quality 
improvements that are taking place.
    Senator Specter. Thank you very much, Senator Cochran.
    Senator Harkin wants to reclaim some of his time to ask 
questions.
    Senator Harkin. I wanted those that came before me to go 
ahead and ask their questions. I just have three things that I 
would like to ask, Madam Secretary.
    First of all, on the medical research infrastructure in 
this country, as we will hear from NIH later and as we all 
know, tremendous breakthroughs are being made every day in 
medical research. With the new genetic information that we have 
now and the new processes, many of the extramural labs that we 
have across the country are simply inadequate. Many of them are 
outdated. We need to upgrade those extramural labs.
    I have been hearing more and more about this over the last 
couple or three years and it has reached almost a crescendo in 
the last several months. The President's budget only requested 
$30 million for extramural construction. I do not want to mix 
these up because I am a strong supporter of the facility on the 
NIH campus. But that has an appropriation of $40 million. So 
there is more going on the NIH campus right now than for all of 
the extramural across the country. I do not say that as a way 
of saying we should take money off the campus.
    I am just saying there needs to be more money put out for 
extramural construction. I will shortly be introducing 
legislation to authorize greater amounts to go out for 
extramural construction. I guess my only question to you is 
your views on that and how you see this playing out, not only 
during this budget cycle, but perhaps even in preparing for 
next year and beyond.
    Secretary Shalala. Senator, thank you very much for the 
question. As you know, the National Science Foundation has 
regularly documented the huge laboratory needs of the major 
research universities in particular. I do not know whether to 
answer you as a former university chancellor or as someone that 
has to live within budget constraints. Let me answer first 
within the budget constraints.
    Senator Harkin. I think I would prefer to chancellor. 
[Laughter.]
    Secretary Shalala. Let me be very candid with you. Within 
these budget constraints, we obviously barely increase the 
National Institutes of Health. The President is on his way, 
though, to meeting his 50 percent goal, in the combination of 
this year and the huge increase last year. But we, internally 
and externally, have never been able to make a case 
successfully to make major investments in the infrastructure, 
in the building infrastructure, even on a matching basis. We 
have been more successful with individual States. Governor 
Tommy Thompson of Wisconsin, for instance, and I developed a 
matching program in which we raised significant money, $215 
million over a 5-year period, and then matched it with private 
money.
    Many public institutions are going to governors and trying 
to put plans together to invest in their research 
infrastructure. The competition, quite candidly, internally is 
always between what the bench scientists need for their 
research and investments in infrastructure. The scientists will 
tell you, if they are candid with you, that they would prefer 
to get the money for their research and let the universities 
figure out a way in which they can raise the money or find it 
in other ways to build the infrastructure. It is really bricks 
and mortar versus the other.
    From the point of view of both a chancellor and someone who 
has to lead these institutions, my view is that we have to find 
a balance. I cannot recommend to you on behalf of the 
President. He has made his submission and I must support his 
budget. But if we are going to expand the National Institutes 
of Health, we are going to have to simultaneously worry about 
the infrastructure, the buildings, the laboratories, and the 
equipment. At the same time, if I might mention a budget you 
are not responsible for, the FDA's, we cannot produce all this 
science and then have the FDA with a small budget and expect 
them to keep up the approvals. So we have to look at the entire 
system that we are producing here and invest properly. I would 
be happy to work with you. I cannot make a recommendation, 
obviously, on this budget. You can hear the sympathy in my 
voice, given where I have been at various times, and I never 
forget where I was before when I do this job. But I am being as 
candid as I possibly can be.
    Senator Harkin. I understand that. I did not mean to put 
you on the spot. I just wanted to--again, the idea being that 
you do recognize that we could work together to try to move 
ahead in that area, and I appreciate that.
    I just have two other things, one building on what Senator 
Cochran said, a little bit different slice on that. I 
understand there is a proposed regulation coming out of your 
Department that would apply new criteria to the designation of 
the health professional shortage areas. I am beginning to hear 
a lot about this in Iowa, because once you qualify for that 
then you get things like community health centers, you get 
Medicare bonus payments for the providers, rural health 
program, National Health Service Corps. All these fall in if 
you qualify.
    I am told the proposed regulations dramatically reduce the 
number of these HPSA's in rural America. The Iowa Department of 
Health estimated that under the proposed rule we would go from 
20 to 6. The National Rural Health Association estimates that 
nationally 30 percent of these service areas would be lost. 
Again, for a lot of our people in rural areas, you lose that 
designation, they lose the bonus payments for the providers, 
they lose the providers.
    I am just wondering why this is happening.
    Secretary Shalala. First of all, as you know from Senator 
Feinstein's question, populations are shifting and periodically 
we need to go back and take a look at whether these areas are 
actually rural now or whether they have actually changed their 
population. Now, we put a rule out that got a lot of comment. 
It got so much comment, Senator, that I actually extended the 
number of comment days by 60 days. I actually extended the----
    Senator Harkin. He is cutting me off. Go ahead, I am sorry.
    Secretary Shalala. We got so much comment----
    Senator Specter. I was not cutting Senator Harkin off. I 
was commenting that we have another panel, we have to conclude 
by 11:30 a.m., and we have been joined by three additional 
members.
    Secretary Shalala. We got so many comments on this that we 
extended the comment period another 60 days. We will look at 
the comments very carefully.
    Senator Harkin. All I can say is, look at them very 
carefully.
    Secretary Shalala. Yes.
    Senator Harkin. Because the way it is impacting--
populations may be shifting, but we have not turned out the 
lights yet in Iowa.
    Secretary Shalala. No, I understand that. We have a 
reputation of actually listening to comments. We put out the 
regs for comment and we often change what we have recommended 
based on the comments.
    Senator Harkin. One last thing. I wrote you a letter dated 
January 14th. The one thing I hear about most often in Iowa 
when it concerns Head Start are the new regulations on 
transportation for Head Start kids. We now have Head Start 
agencies in Iowa buying buses to transport Head Start kids when 
we have rural transit authorities right there that have the 
buses, that can go out and pick up these kids, take them to 
Head Start class, and take them home.
    So the Head Start agency buys the bus, they use it once a 
day, that is it, and it sits there. Yet the rural transit has 
the buses to transport the kids. They have the seatbelts, their 
safety.
    I am told that, you know why they cannot do it, Senator 
Stevens? Because they do not have an arm that swings out like a 
bus and says ``Stop,'' and it does not have a flashing light on 
top. I mean, we have to have some common sense here.
    Secretary Shalala. I agree, Senator. I do not know but I 
will be happy to check it out.
    Senator Harkin. Help me out. There is a lot of money going 
out buying these buses.
    Secretary Shalala. Let me find out what is going on there 
and what the authorities are. I am not sure it is the new regs, 
but I would be happy to look at that.
    Senator Harkin. Well, we have got to do something, because 
they are already starting to buy buses when we need the money 
for the kids.
    Secretary Shalala. Yes; I appreciate it, Senator. Every 
hearing has a question that was not in my briefing book. 
[Laughter.]
    Senator Harkin. Look at my letter.
    Senator Specter. Senator Gregg.

                opening statement of Senator Judd Gregg

    Senator Gregg. Thank you.
    Madam Secretary, just two questions. One, to what extent 
have we prepared and are we developing our storage capabilities 
and preparation capabilities for toxins relative to a terrorist 
action in the area of chemical or biological, and is it 
distributed adequately around the country, and is there an 
adequate toxin capability?
    Secretary Shalala. We are in the process of reviewing that, 
Senator. We would be happy to keep you up to date on what we 
are doing. It is part of the national bioterrorism strategy.
    Senator Gregg. Well, what are we doing? I guess I am 
asking, what are we doing?
    Secretary Shalala. We will be doing some stockpiling of 
appropriate drugs and whatever we need. Whether it is going to 
be a virtual system, so that we know where they are so that we 
can move them around the country, or not, I now cannot give you 
a final answer.
    Senator Gregg. Do we have such a stockpile now?
    Secretary Shalala. Some of that is confidential and some of 
it I can answer, and I will be happy to answer what type of 
stockpiles we have and if we have them in certain areas.
    Senator Gregg. I would like to get an answer. I understand 
some of it may be confidential, so communicate it to us in 
whatever way you need to. I would be interested in knowing what 
our status is on that.
    Secondly, what is your position relative to recovering, the 
Federal Government recovering some percentage of the Medicaid 
settlements? Maybe you already addressed that.
    Secretary Shalala. I have not. I would be happy to address 
it. The President spoke to the governors yesterday and here is 
basically what he told them. The law says that we routinely get 
recoveries from third parties. Under the Social Security Act 
amendments of 1968, Congress gave States the authority for 
suing third parties for reimbursements. They represent the 
Federal Government in those suits. They collect the money, tell 
the Health Care Financing Administration what they have 
collected, and send us the appropriate share under the Medicaid 
law. States have, over the years since 1968, routinely sent us 
billions of dollars. The tobacco settlements are covered by 
that law. What the President pointed out was that he is 
prepared to work with Congress and with the governors. He does 
not necessarily want that money back into the Federal Treasury. 
He wants to make sure, because the issue here is reducing 
smoking among children, that the money is spent on appropriate 
health concerns.
    Last year as part of the tobacco bill we actually worked 
out an agreement with the governors on a menu of things that 
the money would be spent on. But our first position is the 
legal position we must take under the law. Second, the 
President has emphasized to the governors that he expects to be 
able to work something out with the Congress and with them so 
that they can keep the money, but spend it on health-related 
needs such as tobacco control and tobacco prevention.
    Senator Gregg. So first, what percentage do you expect the 
Federal Government to recover of the recoveries that the States 
are having? Secondly, I take it that percentage, you expect the 
Federal Government to set up a regulatory structure to direct 
its expenditures for health care activity?
    Secretary Shalala. No, we are not necessarily talking about 
a regulatory structure. That is the kind of thing that we 
discussed. If you take the percentage the Federal Government 
pays of Medicaid, it is 57 percent.
    Senator Gregg. So is that the amount you expect to recover?
    Secretary Shalala. That is the amount that we will go to 
the table to start negotiations. But Congress, the governors, 
and the administration need to sit down and talk this through. 
I do not expect to set up a huge bureaucracy as a result of 
this. We want to make sure that the money is spent to reduce 
teenage smoking and for other health-related needs. We do 
expect the governors to administer the money, but there will 
have to be some guidance and some agreement on how it will be 
spent.
    Senator Gregg. So if I understand what you are saying, it 
is that, take hypothetically if a State were to recover a 
billion dollars, you would expect the Federal Government to 
have control over 57 percent of that, which would be $570 
million, and that might be under the control of the State 
governor, but you would expect the Federal Government to have a 
say in how that percentage was spent?
    Secretary Shalala. Senator, I cannot respond to a 
hypothetical. You are trying, fairly, to pin me down on 
specifics. Since there is under the law a share that does in 
fact belong to Federal taxpayers, we ought to work out a piece 
of legislation that ensures--if the Congress decides that this 
money ought to be kept in the States--that that money is 
designated by the States. The governors reassured the President 
yesterday that they actually intended to do that and they would 
be happy to sit down and talk this through. So I think we can 
work it out with Congress. We go in with open minds about 
percentages and other things. We would like to work it out in 
legislation.
    The President said that having the money stay in the States 
is fine with him, but he believes that the money ought to be 
spent on tobacco control, on tobacco-related issues, on health 
issues. I heard no objection in the discussion about that. On 
the details, I think that we would leave it to your leadership 
to sit and talk with us and with the governors to work this 
out. We would like to work it out.
    Senator Gregg. Thank you.
    Secretary Shalala. You are welcome.
    Senator Specter. Thank you, Senator Gregg.
    Senator Kohl.

                 opening statement of Senator Herb Kohl

    Senator Kohl. Thank you, Mr. Chairman. I have a single 
question for Mrs. Shalala.
    As you may recall, at last year's hearing I spoke with you 
about legislation to require criminal background checks for 
long-term care workers. Since then I have been pleased to work 
with you on this, and I am glad to see that the background 
checks for nursing home workers were included in the budget.
    However, I feel strongly that it is equally important to 
require checks for all long-term care workers. After all, it 
does little good to stop a criminal from working in a nursing 
home if they can then go on to work in a home health care 
agency.
    Why did the administration stop short of requiring checks 
for all long-term care workers, and would you support an 
expansion of the background check to other long-term care 
settings?
    Secretary Shalala. We are reviewing the issue. We will get 
back to you, Senator Kohl. For some reason, it was much more 
straightforward to go forward with the nursing homes as opposed 
to all of long-term care. But we are prepared to work with you 
on this issue. We want to be able to have these databases and 
to check these records.

                           prepared statement

    Senator Kohl. I thank you.
    I thank you, Mr. Chairman. I have a prepared statement to 
submit for inclusion into the record at this time.
    Senator Specter. Thank you very much, Senator Kohl, your 
statement will be included in the record.
    [The statement follows:]
                Prepared Statement of Senator Herb Kohl
    Thank you, Mr. Chairman. And I want to thank you, Secretary 
Shalala, for once again appearing before this Subcomittee. It's always 
good to see you, and I look forward to discussing the fiscal year 2000 
budget with you in more detail.
    As we approach the new millenium, it is appropriate that we take a 
close look at our values and needs, where we are and where we want to 
be. The first budget of the 21st Century should reflect these goals--
and we should send a strong signal that we will make meeting these 
goals our top priority.
    With our economy continuing its record growth and our budget in 
balance, we have the unique opportunity to focus on helping our 
nation's most vulnerable citizens. First, we must set our sights toward 
creating the best opportunities possible for our children. As more and 
more parents join the workforce, we must ensure that children have a 
safe, stimulating place to spend their time, before their school-age 
years, both before and after school hours, and during the summer 
months. I am pleased to see that the President's budget again includes 
increases for the Child Care & Development Block Grant and Head Start. 
These programs help ensure that children have a safe, educational, and 
recreational place to go when they are not in school.
    I am also pleased to see that the Administration is taking its 
responsibility of nursing home oversight very seriously in this budget. 
Our nation's senior citizens have made our country what it is today--
they deserve to be treated with respect, care and dignity. The 
Administration's Nursing Home Quality Initiative, in conjunction with 
legislation requiring background checks for nursing facility workers, 
will help ensure that our elderly receive the best quality care 
possible. I look forward to working with you, Secretary Shalala, to 
make these proposals a reality.
    Again, thank you for appearing before the Subcommittee today. I am 
eager to hear about the fiscal year 2000 budget in more detail.

            opening statement of senator ernest f. hollings

    Senator Specter. Senator Hollings.
    Senator Hollings. Just one question. Thank you, Mr. 
Chairman.
    Madam Secretary, the community health centers have been 
doing an outstanding job with respect to the uninsured. 
However, we find, under the balanced budget agreement of 1997, 
that they continue to cut Medicaid reimbursement. So, in order 
to take up the slack, community health centers have been forced 
to spend money allocated for uninsured patients to take care of 
Medicaid patients. Again, we had to increase funding by $100 
million last year, and this year you are requesting only a $20 
million increase, even in light of the substantial Medicaid 
cuts.
    I hope you would look at that, and we might have to support 
more money going into the health centers, because what we are 
really doing is we are cutting back on the Medicaid costs, but 
then the health centers are taking their good money and it is 
not getting to the uninsured and therefore they are not getting 
the coverage.
    Secretary Shalala. Senator, there are a number of things 
going on there, and I agree with you. The issue here for the 
community health centers is, as the States move their Medicaid 
recipients into managed care they pull out paying customers 
from the community health centers. The community health centers 
are left with a larger population of the uninsured. One of the 
proposals that we have in this budget would increase the amount 
of money that goes to community health centers. In addition, we 
would help them build themselves into networks in the 
community, so that they can refer people to specialty clinics, 
to academic health centers, and to public hospitals. The 
importance of this is we still have too many people that are 
not going to get their basic care at the community health 
center, but at an emergency room. Community by community, we 
need a seamless system to care for the uninsured. Remember, I 
am not talking here about health insurance. I am talking about 
the health care system that is there working better so that 
people go to community health centers for basic care and then 
are automatically, if they have a chronic illness or need an 
operation, linked up to the specialties that they need. So in 
our investments in community health centers we have to watch 
our basic care system in this country for the uninsured. As we 
pull out Medicaid recipients, as is happening in California, 
for example, Senator Feinstein, the population of the uninsured 
is larger as a percentage in those clinics and they need 
different resources. But the uninsured also need a link to 
specialties and to specialty hospitals. We need this system to 
work in a smooth way for the uninsured, so that they are not 
confused about whether they should go to an emergency room. 
They need to get to the right place at the right time. The 
health care system has to work even though it is fragmented.
    Senator Hollings. Thank you, Mr. Chairman. I will submit my 
other questions.
    Senator Specter. Thank you very much, Senator Hollings.
    Before we move on to our next panel, Madam Secretary, one 
parochial matter that I would like your help on. On August 
18th, I wrote to HCFA Administrator Ms. DeParle concerning the 
assessment made against Pennsylvania's disproportionate share 
hospital program. I would appreciate it if you would expedite a 
response to that.
    One question which I discussed for a moment with Senator 
Stevens. According to the Congressional Research Service, there 
is between $3 billion and $3.5 billion in unspent temporary 
assistance to needy families, welfare, block grant funds, at 
the end of fiscal year 1998. The question comes to my mind 
whether those unexpended balances might be rescinded, might be 
made available for NIH, Head Start.
    Senator Stevens did not say no. In fact, he sort of said 
yes. Senator Stevens?
    Senator Stevens. Well, as a matter of fact, Madam 
Secretary, those are funds according to our information that 
the States did not ask for and they would have to match them in 
some instances if they took them. If they are in that pipeline, 
we do not want to see someone else put their hands on them. We 
would like to have them for medical research. I would urge you 
to take a look at that.
    Someone is in the budget process going to seize that. I do 
not believe they should leave this subcommittee's jurisdiction. 
I agree with Senator Specter, we should work together to see to 
it that those budget funds are used to meet the needed areas of 
research, rather than to have them moved into some other 
portion of the budget.
    Senator Specter. That would eliminate the need for the next 
panel, too, Madam Secretary. [Laughter.]
    Secretary Shalala. Senator, I would not want to block your 
opportunity to hear from my very distinguished colleagues at 
NIH. Let me answer quickly that these are the block grant funds 
that went to the States for the TANF program, the new welfare 
program.
    Senator Stevens. Right.
    Secretary Shalala. Half the States have drawn down their 
money. The other half are in the process of doing that, 
including putting some of the money in rainy day funds.
    Senator Stevens. Well, that is not exactly right. They have 
to take them and match them and use them. If they are going to 
take them and match them and put them in the bank, why should 
we borrow money so they can put it in the bank and earn money?
    Secretary Shalala. Well, Senator, because that was an 
eligible activity to which Congress agreed. I would be happy to 
have a lengthier conversation about these funds. I think the 
next quarter will show that the governors are drawing these 
down faster. A rainy day fund was a legitimate expenditure for 
TANF. I want to be very protective because the governors are 
now faced with a welfare population which needs much more 
intensive expenditures, such as substance abuse problems, and 
are harder to get off welfare. Many States were putting these 
moneys aside for that process. Half the States have already 
drawn it down. The other half that has not has plans for the 
money. So we would not want to encourage you to take that away. 
If I knew of any other pot of money, I would identify it 
immediately for my colleagues at the NIH. I want to reassure 
you of that.
    Senator Stevens. Mr. Chairman, if I may be full and open 
with you, the President asked me to agree to reprogram some 
funds for the problems related to Hurricane Mitch from defense, 
and we objected to that. He said, well, where should we get 
them? I gave him a list of four or five areas and one of them 
is this.
    I think that those funds are annually augmented. Those 
States that did not take the moneys last year are going to get 
more money this year. Now, we are not going to have them take 
that out and put it in the bank. Now, that is all there is to 
it. We cannot work this system that way, because we still are 
borrowing money on this budget.
    Sorry about that.
    Senator Specter. Well, thank you very much, Senator 
Stevens.
    The point is that those were unused at the end of fiscal 
year 1998 and I do think that would be relevant as to the 
inability of the States to take the money from last year when 
current funds are available. Well, it is something we want to 
pursue. It is a very substantial sum of money, and I think we 
made a little progress.
    Secretary Shalala. Thank you, Senator.
    Senator Specter. We really appreciate your being here, 
Madam Secretary.
    Secretary Shalala. Thank you, Mr. Chairman.
    Senator Specter. Thank you. Thank you very much.

                     Additional committee questions

    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:]
              Questions Submitted by Senator Arlen Specter
                               user fees
    HCFA's fiscal year 2000 budget has once again proposed a number of 
new user fees, totaling $194.5 million, to supplement its program 
management budget. The enactment of user fees would offset the 
appropriation by an amount equivalent to the estimated collections.
    Question. In light of past resistance from the provider community 
to the proposed user fees, what alternative revenue sources should we 
consider?
    Answer. The proposed user fees make good programmatic sense and fit 
within our goal of increasing the efficiency of our payment systems. 
For example:
    Charging enrollment fees to enter fee-for-service Medicare would 
discourage ``bad actor'' providers from entering Medicare. Charging 
facilities a fee for their initial survey would discourage ``fly-by-
night'' facilities from seeking entry into the Medicare program. A few 
for duplicate claims or paper claims would reduce the costs of 
processing claims and increase the efficiency of HCFA's payment system. 
Processors in rural areas with no electronic claims capability will 
have the opportunity to receive special waivers from the paper claims 
user fee. In addition, we believe that health care providers receive 
significant revenues from participation in Medicare, and the proposed 
user fees are small in comparison.
    This year funding alternatives are not needed because, in the 
absence of enactment of the user fees, the request for Program 
Management is for the full amount needed to operate the program. HCFA 
is engaged in a management reform initiative, highlighted in the 
President's budget, that will help us make the most efficient use of 
our resources and adapt to the changing health care market.
    In recent years, HCFA's Program Management budget has remained 
relatively flat, while our legislative and operational challenges have 
continued to increase. Congress began to address this last year when 
HCFA received more than an 8 percent increase in program level to fund 
important activities such as BBA and HIPAA implementation and Y2K 
remediation. HCFA's fiscal year 2000 budget request provides for a 6.0 
percent increase over fiscal year 1999, which is necessary to meet 
HCFA's expanding programmatic responsibilities, as well as priority 
base activities.
    We thank Congress for providing the fiscal year 1999 increase, and 
we look forward to working with Congress to address any further 
concerns and to ensure that HCFA receives its full budget request for 
fiscal year 2000.
    Question. Can HCFA officials propose outreach activities or 
implementation strategies that might be used to asoften their concerns?
    Answer. If the user fees are enacted, HCFA may propose outreach 
activities and implementation strategies. The agency normally 
undertakes these kinds of efforts to inform its partners and 
stakeholders of programmatic changes. It is their belief that such 
educational activities would allay many provider concerns over the 
proposed user fees.
Program management user fees
    HCFA is proposing enrollment and claim processing fees of $92.8 
million in fiscal year 2000. It is also proposing to collect $37.7 
million in fiscal year 2000 from managed care plans both for filing 
initial applications and renewing contracts.
    Question. What are the additional costs associated with the 
implementation of the claims processing user fees? Specifically, will 
implementation tie up contractor resources so that other HCFA 
initiatives would be delayed?
    Answer. There will be some costs to Medicare contractors to make 
the software changes necessary to set up a fee charging and tracking 
system. Although these activities are new, they will not be so 
extensive as to impact the implementation of any other HCFA initiative.
    Question. How many providers will be affected by the fee for the 
submission of paper claims? Apart from rural providers and those with a 
limited number of Medicare claims, who is most likely to be affected by 
the fee on paper claims?
    Answer. Although HCFA does not have a precise count of the number 
of providers that submit paper claims, approximately 17 percent of all 
claims submitted are on paper. The proposed language stipulates that if 
a provider does not have the necessary technological equipment or, if 
the provider, regardless of location, submits a very limited number of 
Medicare claims they be allowed to request a waiver to this fee, 
thereby ensuring that these providers are not impacted by this fee. The 
providers that will most likely be affected by this fee are those with 
a large number of Medicare claims that possess the technological 
equipment necessary to submit claims electronically but choose not to.
    Question. What are a provider's costs when switching from paper to 
electronic submission?
    Answer. The software required to transmit claims electronically is 
free, as is the technical support to answer provider questions about 
this software. Additional costs would be incurred for a personal 
computer, modem and phone line. HCFA believes that all but a very small 
percentage of providers have this equipment already. The 
Administration's legislative package includes language allowing 
providers to request a waiver from this fee if they lack the necessary 
technological equipment.
    Question. Does HCFA expect an increase in the number of paper 
claims, perhaps duplicate submissions, due to confusion surrounding 
millennium compliance?
    Answer. Yes, the agency does expect an increase in the number of 
paper and duplicate claims arising from confusion surrounding 
millennium compliance. HCFA's fiscal year 2000 budget request includes 
additional funding for the Medicare contractors from the Public Health 
and Social Services Emergency Fund to cover this contingency. The 
agency believes the impact of millennium confusion should dissipate 
early in the year and the fee for processing paper and duplicate claims 
will not be imposed until the second half of the fiscal year. If this 
is not the case, HCFA will reevaluate the timing of the implementation 
of the user fee.
    Question. What would be the average application fee for those 
managed care organizations seeking to participate in Medicare? What 
were the assumptions that were made in calculating the amount?
    Answer. The application fee for managed care organizations would be 
about $55,000, or the cost of two-thirds of an FTE. Reviewing an 
organization's application, and its ongoing operations, is a very 
labor-intensive process. HCFA staff visits the organization to conduct 
a legal review of the entity and its administration. This includes 
monitoring for fiscal soundness and all other requirements that the 
plan must meet to participate in Medicare. Agency staff also conducts 
an in-depth review of the plan's health services delivery network, 
marketing materials, benefit packages, and enrollment & disenrollment 
procedures. Ensuring they meet the requirements to become a Medicare 
managed care organization is essential in determining that the 
organizations are in compliance prior to treatment of beneficiaries.
    Question. Wouldn't plans perceive this application fee as an 
additional barrier to participating in the Medicare+Choice program?
    Answer. HCFA assumes providers will recognize that this fee is not 
a barrier to participation, but a normal cost of doing business that is 
similar to other fees that they incur in their day-to-day operations in 
the private sector.
    Question. Could the review of a plan's application be privatized, 
i.e., through use of a private sector accreditation organization that 
would collect fees for its work?
    Answer. While this could probably be done, it seems to make as 
much, if not more, sense to make HCFA responsible for this workload 
since the agency already performs these activities, and already has a 
system in place for charging and collecting this type of fee.
State survey and certification user fees
    Question. What is the expected cost, by type of provider, for 
certification and recertification?
    Answer. The proposed law user fees would cover 100 percent of 
HCFA's costs for the initial survey and one-third of HCFA's cost for 
recertification. These user fees would total $65 million. The table 
below displays the approximate total expected cost by type of provider.

------------------------------------------------------------------------
                                                   Total
                 Provider type                   number of    Total cost
                                                  surveys
------------------------------------------------------------------------
Skilled Nursing Facilities (SNF)..............        1,821         $9.0
SNF/NF........................................       15,056         35.3
Home Health Agencies..........................        9,122         12.7
Hospitals.....................................          508           .7
Non-accredited Hospitals......................          165           .4
Others........................................        4,205          6.9
                                               -------------------------
      Total...................................  ...........        65.0
------------------------------------------------------------------------
Note: Numbers are rounded for presentation purposes.

    Question. Do these costs vary by state or by region?
    Answer. Yes, costs would vary by State. This is due to differences 
in surveyor salaries and the indirect costs.
    Question. Are these survey costs expected to be a burden on small 
or rural providers? If so, how would this be addressed under the 
proposal?
    Answer. In keeping with the growing government-wide trend of 
charging user fees, we believe that charging these fees is reasonable 
and will not impose an undue burden on small or rural providers. The 
fees will vary by the size of the facility, but will be the same for 
the same size facility state-wide. These fees will allow us to oversee 
the Medicare program, including the significant legislative changes, 
while minimizing the need for discretionary budget authority.
Increase Medicare+choice User Fees
    Question. How will HCFA prioritize its efforts to educate Medicare 
beneficiaries if these activities are level funded in fiscal year 2000?
    Answer. HCFA has an eight point National Medicare Education Program 
to explain Medicare+Choice. This program consists of beneficiary 
mailings, toll-free telephone lines, Internet activities, national 
training and support for information givers, national publicity 
campaign, State and community-based special outreach and education, 
enhanced beneficiary counseling from State health insurance assistance 
programs, and targeted and comprehensive assessment of the education 
model. Funding goes first to cover the beneficiary mailing, telephone 
service and the Internet. Level funding would mean we would have to 
limit or even forgo activities in the other areas listed.
    Question. Has the user fee been seen as deterring participation in 
the Medicare+Choice program by managed care provider groups?
    Answer. Though managed care organizations are unenthusiastic about 
the user fee established in the Balanced Budget Act, we have seen 
nothing to indicate that the Medicare+Choice user fees are deterring 
new applicants from participating in the program. Furthermore, we have 
seen nothing to indicate that existing contractors have contemplated 
leaving the Medicare program as a result of the user fee provision.
    Question. HCFA sought expedited review and approval from OMB for a 
``bounce back form'' to solicit reactions from users of its 
Medicare+Choice website. Was this granted? If so, was useful 
information gathered and changes made?
    Answer. We have sought expedited clearance on two forms for 
www.medicare.gov. In the fall of 1998, we sought expedited clearance 
for a bounceback form to obtain feedback on the Medicare & You handbook 
on the website. As of the end of February, we have received over 9,500 
responses to the form. We have received feedback that is being 
incorporated into revisions of the handbook for next year. We more 
recently sought expedited clearance for a bounceback form for the 
overall www.medicare.gov site. The intent of this form is to collect 
feedback on the overall site. This form will be up on the website 
within the next few weeks.
    Question. HCFA is seeking nominations for a Citizens Advisory Panel 
to advise the agency on effective educational programs. Please provide 
more information on the role of this panel, expected benefits and 
projected costs. How will it differ from information initially gathered 
through focus groups, interviews, and expert evaluations?
    Answer. The Citizens Advisory Panel on Medicare Education will 
focus its review on the National Medicare Education Program and our 
other efforts to help Medicare beneficiaries, and those who assist 
them, find accurate and current information about new Medicare options 
and benefits under the Medicare+Choice program. The panel will also 
identify best practices in consumer health education that could enhance 
our efforts to inform and assist Medicare beneficiaries about their 
health plan options. An annual report to the HCFA Administrator will 
summarize the panel's findings and any recommendations the panel may 
provide.
    The panel will consist of 10 appointed members from among 
authorities in disability and chronic disease interests, minority 
populations, health consumer interests, seniors' organizations, health 
communications and policy, research and philanthropic organizations, 
health insurers and plans, employer groups, and health providers. 
Additional participation is expected from other federal agencies with 
an interest in these issues.
    The panel will meet quarterly and comply fully with the Federal 
Advisory Committee Act, including provisions for open public meetings. 
The current cost estimate is about $45,000 per meeting, including 
travel costs, small honoraria, and development of background materials.
    This panel will complement, rather than replace, HCFA's existing 
efforts for Medicare beneficiary education. For example, the alliance 
network of over 100 national health-related organizations currently 
helps HCFA to disseminate materials and understand current conditions 
in the community and the marketplace; however, the alliance network 
does not provide policy guidance or recommendations for future action, 
nor does it provide HCFA with broad exposure to best practices. HCFA's 
own evaluation and assessment activities, such as focus groups and 
expert evaluations, will continue to provide important information into 
existing campaigns, but will not provide the kind of broad expert input 
that can occur only through a formal advisory committee compliant with 
the Federal Advisory Committee Act.
                   children's health insurance (chip)
    Question. What types of CHIP outreach activities have states 
undertaken to date?
    Answer. States are actively seeking improved methods to simplify 
their enrollment process and to design innovative strategies to reach 
out to eligible populations of uninsured children. Listed below are 
successful and/or promising outreach strategies which States believe 
are resulting in significant enrollments:
Alabama
    Developed many innovative partnerships. One of the more creative is 
between South Baldwin Regional Medical Center-Gulf Shores and the U.S. 
Postal Service (USPS). This is the first hospital in the nation to be 
selected for the USPS partnership program. The program assigns key 
postal employees to work full time on community projects such as 
outreach at non-traditional sites during non-traditional hours and 
providing brochures, posters, and applications to medical and dental 
offices.
    Delivered an extensive physician CHIP training program throughout 
the State. A variety of health organizations have received training and 
information on the AL-Kids CHIP program. This has been an effective 
approach in distributing applications and receiving referrals of 
eligible participants.
Florida
    Convened focus groups to facilitate development of materials for 
families, including Hispanic families and those with special needs. For 
example, migrant farm workers assisted in developing an easily-
readable, single-page application form and in explaining issues of 
great concern to immigrant families with eligible children.
    Published CHIP materials in both English and Spanish, and maintains 
a toll-free number with access to workers who speak Creole, Spanish, 
and other languages to help families fill out the application form or 
answer any questions. A multi-media campaign was also produced in 
Spanish and English and aired on both network and cable television 
channels.
Iowa
    Contracted its outreach program to a small marketing firm, 
implemented statewide training, distributed thousands of brochures to 
schools, providers, and other agencies.
    Received considerable support in enrolling children from the 
Maternal Child Health (MCH) and Women, Infants, and Children (WIC) 
programs.
    Promoted cultural competence by maintaining a toll-free number that 
is staffed by Spanish-speaking individuals.
Louisiana
    Developed major media contacts to provide opportunities for State 
CHIP program representatives to appear on local TV and radio programs, 
including the health segment of the news.
    Distributed a tri-fold brochure with an attached enrollment 
application, which is credited as being the most important aspect of 
outreach. These brochures are placed in high traffic locations, such as 
libraries and post offices, and more unconventional locations such as 
apartment laundry rooms.
Maryland
    Shortened the processing time for enrollment determinations by 
delegating this responsibility to the local health organizations.
    Distributed program information to every facility in the State 
which provides services to children.
    Enlisted broad-based partnerships, both private and public, to 
facilitate program information dissemination and identification of 
uninsured children.
Massachusetts
    Developed regional outreach networks focusing on local grassroots 
outreach, bringing community organizations together with providers and 
State agency outreach/enrollment staff. These networks, funded by mini-
grants from the State, tailor outreach to the needs and wants of 
specific communities and regions of the State and meet monthly to 
exchange program information and best practices in reaching and 
enrolling the eligible population.
    Collaborated with local housing authorities to identify families in 
need of insurance for children through their annual housing 
recertification processes and through informational meetings and 
materials tailored to the languages and cultures served by specific 
housing sites.
Michigan
    Established numerous business partnerships with organizations such 
as Meijer, K-Mart Pharmacies, Michigan Retailers Association, Michigan 
Grocers Association, and Pharma to promote the program and distribute 
applications, as well as partnering with the Michigan Association of 
Broadcasters to run some media spots free of charge.
    Employed enrollment brokers to facilitate enrollment at one 
centralized processing site for all MIChild applications. Also, has 
State agency eligibility workers on site to process Healthy Kids 
applications and uses a special computerized program to help the 
broker-employee refer the applicant to the appropriate program.
New Jersey
    Established innovative outreach partnerships with many State 
agencies, including innovations such as the Division of Motor Vehicles 
which mails KidCare materials with license and registration forms, and 
the Department of Health and Senior Services which provides birth 
registry data to the State's program and subsequently notifies new 
parents. Also, developed private partnerships with health care 
providers, agencies, and community-based organizations.
    Established an extensive volunteer network, especially with the 
AmeriCorp VISTA volunteer project. VISTA volunteers actively work to 
identify uninsured children from low-income working families who may be 
eligible for the program. AmeriCorp has enabled the State to increase 
resources and strengthen its program in terms of cost effectiveness and 
efficiency.
New Mexico
    Trained and out-stationed over 1,000 eligibility workers to enroll 
children presumptively and to assist families with the enrollment 
process.
    Launched a statewide campaign emphasizing the multi-cultural 
diversity of the ``New Mexikids'' program through newspaper and radio 
spots in English, Spanish, and Navajo. Brochures, pencils, and magnets 
have been distributed through various health care providers, including 
all the Native American tribes.
Oklahoma
    Enlisted partnerships with tribal leaders, community health 
centers, Head Start centers, WIC, Department of Health, and community 
action agencies. The CHIP application form was shortened from sixteen 
pages to one and the state eliminated the assets test.
    Developed materials and implemented a culturally-sensitive training 
program to address culturally different groups and subpopulations.
South Carolina
    Established extensive private partnerships with pharmacies, 
licensed day care centers, schools, and religious organizations 
throughout the State. These organizations distribute the CHIP mail-in 
applications.
    Enhanced its relationship with Native Americans through discussions 
on the Catawba Indian reservations and with the March of Dimes to 
provide better services to and assist in enrolling the Native American 
population and the migrant and Hispanic populations, respectively.
Utah
    Developed a community-level outreach program statewide with active 
staff participation.
    Expanded the number of community partnerships to over 70 locations.
    Question. How do these activities mesh with what research indicates 
are effective and ineffective outreach strategies for the targeted CHIP 
population?
    Answer. A recent publication of the National Center for Education 
in Maternal and Child Health, titled ``Successful Outreach Strategies: 
Ten Programs That Link Children to Health Services,'' indicates that 
``relatively little evaluation of outreach activities has been 
published in the literature.'' However, States are currently collecting 
data on these issues. Some States are including a section on their 
application which asks where the person heard about the program. Other 
States are coding certain applications to determine where the most are 
being distributed and completed, i.e., through the schools, through the 
hospitals, etc. Because many of these programs are relatively young, 
States have yet to determine what strategies enroll the largest numbers 
of people.
    Question. What are the per-eligible costs associated with effective 
outreach strategies?
    Answer. HCFA has received some claims for Federal Financial 
Participation CHIP outreach from some States. However, while some of 
these costs are broken down into specific outreach activities, others 
are not. Associating costs with specific outreach activities is 
difficult. Outreach efforts are multi-faceted and individual decision 
making processes are complex making it difficult to determine which 
outreach activities and at which point in time the outreach activity 
prompted the decision to enroll. A person who decides to enroll may 
only do so after seeing a television ad, hearing about it on the radio, 
hearing other people talk about the program, seeing a poster, and then 
calling a toll-free number. Individuals may not enroll for several 
weeks or months after being exposed to outreach efforts.
    There may be substantial start-up costs in creating new materials 
and identifying where efforts should be targeted, but outreach is 
really a long term investment. It is unclear how long specific outreach 
activities remain effective. Additionally, cost per eligible may vary 
depending on geographic area, specific population targeted, or a 
variety of other factors. CHIP programs are fairly new, and States have 
had insufficient time to evaluate the costs and effectiveness of 
outreach costs per eligible.
    HCFA has provided cultural competency training to regional staff to 
assist States in working with community groups and other stakeholders 
to identify cost-effective strategies which facilitate enrollment into 
CHIP. Private sector partners are also working to create ways of 
assessing outreach strategies.
    Measuring the effectiveness of states' outreach activities is 
critical to continual improvement of outreach efforts. HCFA is 
committed to assisting States in determining ways to measure successful 
and cost-effective outreach.
    Question. What type of guidance has HCFA provided to states on 
these issues?
    Answer. HCFA has conducted Regional Office outreach conferences, 
focus groups, technical advisory panels, and prepared a series of 
letters encouraging States to design and implement outreach activities 
that will reach the largely diverse groups of uninsured children. 
Formal guidance to States, offered through these letters, promote 
simplifying the enrollment process and developing innovative outreach 
practices.
    For example, HCFA issued guidance to the States in a letter dated 
September 10, 1998, which highlighted opportunities for outreach and 
the flexibility States have to simplify the application and enrollment 
process. The letter offered clarification of two major eligibility-
related issues that impact on enrollment: (1) the provision of Social 
Security numbers for applicants and non-applicant family members and 
(2) the establishment of immigration status for non-citizens.
          health resources and services administration (hrsa)
    Question. In its fiscal year 1999 funding request, Health Resources 
and Services Administration (HRSA) expressed a need to increase the 
supply of: primary care practitioners, geriatric faculty and geriatric 
trained practitioners, dentists with post-doctoral degrees, and public 
health professionals. Please explain what has happened in the last 
fiscal year to eliminate the need for funding this professional 
training, especially (a) primary care physicians who often serve as 
gatekeepers in the growing managed care environment; and (b) geriatric 
practitioners, in light of the ``baby boom'' factor.
    Answer. The Department recognizes that primary care, post-doctoral 
dentistry, geriatric, and public health training is a critical need. 
However, there are also severe national needs in other areas. For these 
particular programs, the Department believes that other forces such as 
market demand, the Medicare program, the states, and educational 
institutions will provide resources for training of these health care 
providers.
    Question. HRSA's fiscal year 2000 funding request for health 
professions emphasizes the need for more diversity in health care 
providers and to improve access to and quality of health care in 
underserved areas. Please provide information on other federal programs 
that encourage participation of ethnic minorities in health care.
    Answer. In addition to the HRSA Health Professions activities, 
other departmental programs work to increase participation of 
minorities in the provision of health care.
    HRSA's National Health Service Corps (NHSC) is a primary care, 
safety-net program which recruits and places clinicians in underserved 
communities, including inner city and rural areas where primary heath 
care programs are often difficult to access. The NHSC Recruitment 
program, which includes scholarship and loan repayment activities, 
recruits its recipients from diverse ethnic and cultural backgrounds. 
For the 326 fiscal year 1998 scholarship awardees, 43 percent were 
minority clinicians (19 percent African American, 8 percent Hispanic, 7 
percent Asian, 0.1 percent American Indian and 9 percent other). For 
the 521 fiscal year 1998 Federal Loan Repayment recipients, 33 percent 
were minority clinicians (19 percent African American, 9 percent 
Hispanic, 4 percent Asian, 1 percent Native American and 0.4 percent 
Pacific Islander). The percentage of NHSC providers from 
underrepresented minority backgrounds exceeds those of the Nation's 
health workforce and even exceeds the percentage of these individuals 
that comprise the Nation's population. The NHSC maintains a strong 
commitment to recruiting a diverse provider base. The fiscal year 2000 
budget proposes $115 million for NHSC activities.
    The Indian Health Service (IHS) provides health professions 
scholarships for Native American students both to increase the number 
of Indian health professionals and to assure an adequate number of 
health professionals are available to meet the needs of the IHS and 
other organizations providing health care for Indian people. 
Approximately 600 students are supported annually. Scholarships are 
provided for attendance at professionals school (e.g., medicine, 
nursing) and for necessary pre-professional education (e.g., pre-
medicine, or pre-dentistry). Students receiving scholarships for 
professional school incur a service obligation which they can discharge 
either by working for the IHS, working for tribal or urban Indian 
organizations receiving IHS funds, or practicing in health professions 
shortage areas serving substantial numbers of Indian people. The fiscal 
year 2000 budget request includes approximately $14 million for the 
scholarship program.
    Question. Does the need for more diversity and service in 
underserved areas come at the expense of diversity in other more 
adequately served areas?
    Answer. Increasing diversity of the health professions workforce in 
underserved areas is not expected to come at the expense of diversity 
in more adequately served areas. More diversity in the health 
professions workforce is needed throughout the country. Currently, 
minorities constitute 25 percent of the total population but only 10 
percent of the health care workforce. Even with HRSA training funds and 
the various strategies HRSA employs for improving the diversity of the 
health professions workforce, minorities in the health professions are 
not keeping pace with minority population growth. It should be noted 
that studies have shown that minority health professionals are more 
likely to locate in underserved areas and provide services to ethnic 
populations. Thus, diversifying the health professions workforce 
improves access to health care for underserved populations.
                           hiv and minorities
    Question. What specific projects and programs are planned at HRSA, 
CDC, and SAMSHA to address the problem of HIV/AIDS in racial and ethnic 
communities?
    Answer. For fiscal year 1999, the U.S. Department of Health and 
Human Services will spend $156 million to enhance the Federal response 
to HIV/AIDS in racial and ethnic minority communities. Of these funds, 
$144 million will be administered by HRSA, CDC, and SAMHSA. This 
funding is spread across three broad categories: technical assistance 
and infrastructure support; increasing access to prevention and care, 
and building stronger linkages to address the needs of specific 
populations.
    The specific Initiative projects and programs planned at HRSA, CDC 
and SAMHSA include:
Health Resources and Services Administration (HRSA)
    Targeted Provider Education ($2.8 million).--This initiative will 
target providers serving racial and ethnic minority populations at high 
risk within defined service areas--adolescent medicine, prison medicine 
providers, juvenile correctional facilities, homeless shelters, drug 
treatment, family planning providers, and OB/GYNs. It will also improve 
the capacity of minority providers/institutions to directly provide 
assistance, care and services through telemedicine and related efforts.
    Peer Education Community Training Institute ($2.0 million).--This 
program will support the training and development of knowledgeable peer 
educators to work within their minority communities on treatment 
education, to increase the awareness, acceptance and appropriate 
utilization of effective new therapies among HIV-infected persons.
    Capacity Building Demonstration Project ($1.0 million).--This 
investment expands a multi-city demonstration project focused on 
outreach to minority community-based organizations not already 
receiving federal dollars. It assists CBOs to develop and maintain 
linkages with other service sites to complete the continuum of medical 
care and support services needed for HIV infected minority populations, 
and to improve their ability to receive and retain federal grants and 
diversity their financial support to improve stability.
    Title IV Programs of the Ryan White CARE Act ($12.2 million).--To 
support care and access to research for children, women, youth and 
families impacted by HIV/AIDS. More than two-thirds of this program's 
clients are African-American or Hispanic. This program was continued 
from fiscal year 1998.
    Integrated Services/Ryan White Special Projects of National 
Significance ($135,000).--Continued funding from fiscal year 1998 for a 
project developing models of care linking HIV ambulatory care with 
mental health, substance abuse treatment and other important HIV-
related services targeting African-Americans and Latinos in the Los 
Angeles area.
    Help for CBOs ($100,000).--To develop and pilot test a training 
program for minority CBOs in three cities by April 1999, continuing 
funding from fiscal year 1998.
    Healthy Start ($950,000).--These funds will be used to meet a new 
requirement of the Healthy Start program that says all Healthy Start 
projects conduct HIV/AIDs related activities for about 1 million 
childbearing-age African-American women in Healthy Start communities, 
including outreach, screening and counseling.
    Community Health Centers Service Delivery ($1.0 million).--Also 
continued from fiscal year 1998, this is designed to provide innovative 
outreach and primary care services in heavily impacted racial and 
ethnic minority communities.
    Ryan White Title I Emergency ($5.0 million).--This supplemental 
funding from Congress is going to eligible metropolitan areas with more 
than 30 percent African-American and Latino HIV/AIDS cases to improve 
the quality of care and health outcomes.
    Ryan White Title III Planning Grants ($3.0 million).--These grants 
help community- based organizations located in medically underserved 
areas (both rural and urban) plan primary care services for African-
American communities heavily impacted by HIV/AIDS.
    Ryan White AIDS Education and Training Centers ($2.0 million).--
This will provide Historically Black Colleges and Universities support 
for training minority providers in up-to-date treatment standards for 
persons with HIV/AIDS.
Centers for Disease Control and Prevention (CDC)
    Technical Assistance and Capacity Development ($5.0 million, CDC, 
HRSA, NIH, SAMHSA, and OPHS).--These funds will be invested in new 
approaches to delivering technical assistance and nurturing the 
development of service delivery capacity within minority communities in 
need of HIV prevention and treatment services.
    Community Development Grants for HIV/STD/TB/Substance Abuse/
Integration/Linkages ($4.0 million, CDC with HRSA and SAMHSA).--These 
grants will go to local communities to support needs assessments and 
planning processes to integrate HIV, STD, TB and substance abuse 
prevention and care.
    HIV Prevention Among Gay Men of Color ($7.0 million).--These funds 
will support HIV prevention organizations serving gay men of color for 
the delivery of heath education, outreach, counseling and testing, 
prevention case management and formal referral to services. Technical 
assistance will also be provided to support a durable capacity to 
deliver effective prevention interventions and services
    Linkages of Incarcerated Populations with Community Prevention and 
Care ($5.0 million).--Funds will support collaborative demonstration 
and service enhancement projects to develop discharge planning/
community integration models for prevention case management for HIV-
infected inmates upon release, facilitate formal linkages into care 
upon discharge, and ensure continuation of ongoing HIV medical 
therapies during transition to community-based care.
    Prevention Education and Early Identification Project ($6.2 
million, CDC and NIH with HRSA and SAMHSA).--These funds will support 
the development of new and innovative early identification strategies 
to reach high risk populations and create linkages with care, with a 
focus on adolescents and women of color.
    Minority Community-Based Organizations (CBO) and Prevention ($4.0 
million).--This continues fiscal year 1998 competitive funding, through 
state and Local health departments, for racial and ethnic minority CBOs 
in 30 high-priority areas for HIV prevention in African-American and 
Latino communities.
    Prevention Among HIV Positive Persons ($3.9 million).--To continue 
fiscal year 1998 funding for five HIV prevention demonstration 
projects, especially for racial and ethnic minorities and others that 
have a tough time accessing treatment and prevention services.
    HIV Prevention Through STD Treatment ($1.7 million).--Continued 
funding from fiscal year 1998 for enhanced syphilis elimination efforts 
in 13 areas heavily impacted by the disease. Syphilis 
disproportionately impacts communities of color and early STD detection 
and treatment reduces the risk of HIV transmission.
    Prevention for Gay Men ($800,000).--Continued funding from fiscal 
year 1998 for universities and organizations to conduct behavioral 
research on the effectiveness of HIV prevention interventions for gay 
men, especially racial and ethnic minorities. Also for testing new 
interventions.
    Reducing Transmission ($400,000).--Continued from fiscal year 1998, 
these funds will help CDC develop population-specific strategies to 
better target prevention resources and help CBOs expand their ability 
to provide effective interventions.
    Better Targeting of Community Prevention Funding ($15.0 million).--
CDC will work with states to make HIV Prevention Community Planning 
allocation decisions reflective of their HIV demographics, and will use 
the funding for redirection to African-American and Latino communities 
as necessary.
    Directly Funded CBOs ($10.0 million).--For direct funding of grant 
applications of indigenous organizations with a history of working with 
African-American communities to target high-risk populations.
    Technical Assistance ($2.5 million).--For national, regional and 
Local minority organizations to provide technical assistance to 
minority CBOs that are in the direct funding program.
    Faith Based Initiatives ($1.5 million).--For developing HIV and 
substance abuse prevention programs at divinity schools located at 
Historically Black Colleges and Universities, and for expanding the 
ability of other faith-centered programs in this area.
    Community Development ($4.0 million). To be used to create new 
community development grants for African-American areas heavily 
impacted by HIV/AIDS that will lead to the integration of HIV/AIDS, 
STD, TB, and substance abuse prevention, treatment and care in these 
communities.
    Pilot Prison Programs ($2.5 million).--These funds will be used to 
work with state and Local corrections officials to track the impact of 
HIV/AIDS within prisons, guide effective prevention and treatment 
interventions, and help link those about to be released to sources for 
community-based care.
    HIV-Positive Research and Prevention Models in Minority Communities 
($1.0 million).--To start research projects that evaluate innovative 
prevention interventions for HIV-positive African-American women and 
their sex partners. This will complement existing CDC research on 
developing interventions for HIV-positive men. In addition, CDC's $10 
million demonstration program eliminating racial and ethnic health 
disparities will fund approximately 30 sites to develop community 
action plans designed to identify and implement effective interventions 
aimed at improving health disparities in racial and ethnic populations. 
HIV/AIDS is one of the six health disparities targeted by the 
Departmental Initiative.
Substance Abuse and Mental Health Services Administration (SAMHSA)
    Outreach Grants ($7.5 million, SAMHSA/CSAT).--These grants will 
support substance abuse outreach workers in African American and 
Hispanic communities in those cities with high HIV/AIDS case rates, 
increasing HIV testing outreach and formal linkages with both substance 
abuse treatment and HIV prevention and care.
    Substance Abuse Prevention/HIV Care Capacity Grants ($5.0 million, 
SAMHSA/CSAP).--These grants will fund substance abuse treatment 
programs that want to expand their HIV expertise, and those HIV care 
programs that want to offer substance abuse services.
    Programs for Women and Children ($9.0 million).--The Congress has 
directed that $9 million be used for comprehensive treatment for women 
and their children.
    Substance Abuse Treatment for Men ($7.0 million).--In addition to 
targeted programs for women and children, the Congress has directed an 
additional $7 million to support substance abuse treatment programs 
that include an HIV component.
    Center for Substance Abuse Prevention ($8.5 million).--The Congress 
has directed an additional $6 million to complement $2.5 million in the 
President's budget request to be targeted to prevention services for 
African American and Hispanic youth.
    Setaside for Linkages with HIV Services ($2.5 million).--Establish 
linkages between substance abuse treatment and HIV services within 
SAMHSA's new Targeted Capacity Expansion initiative, and place an 
earmark of $2.5 million within the program next year for an integrated 
substance abuse and HIV care component.
    Question. Which HHS agencies have received portions of the $50 
million amount in the Office of the Secretary of HHS and what projects 
and programs will these funds be supporting?
    Answer. The Public Health and Social Services Emergency Fund 
(PHSSEF) includes $50 million to address the HIV/AIDS crisis in racial 
and ethnic minority communities through specifically targeted programs 
that respond to the changing demographics of the disease. These funds 
will be used for high priority prevention and treatment needs in areas 
heavily impacted by HIV/AIDS and will complement existing and 
previously planned targeted HIV/AIDS activities regarding communities 
of color. Initiatives to be supported with these resources include the 
following activities (with lead agency noted):
    Outreach Grants ($7.5 million, SAMHSA/CSAT).--These grants will 
support substance abuse outreach workers in African American and 
Hispanic communities in those cities with high HIV/AIDS case rates, 
increasing HIV testing outreach and formal linkages with both substance 
abuse treatment and HIV prevention and care.
    Substance Abuse Prevention/HIV Care Capacity Grants ($5.0 million, 
SAMHSA/CSAP).--These grants will fund substance abuse treatment 
programs that want to expand their HIV expertise, and those HIV care 
programs that want to offer substance abuse services.
    Community Development Grants for HIV/STD/TB/Substance Abuse/
Integration/Linkages ($4.0 million, CDC with HRSA and SAMHSA).--These 
grants will go to local communities to support needs assessments and 
planning processes to integrate HIV, STD, TB and substance abuse 
prevention and care.
    HIV Prevention Among Gay Men of Color ($7.0 million, CDC).--These 
funds will support HIV prevention organizations serving gay men of 
color for the delivery of heath education, outreach, counseling and 
testing, prevention case management and formal referral to services. 
Technical assistance will also be provided to support a durable 
capacity to deliver effective prevention interventions and services
    Linkages of Incarcerated Populations with Community Prevention and 
Care ($5.0 million, CDC).--Funds will support collaborative 
demonstration and service enhancement projects to develop discharge 
planning/community integration models for prevention case management 
for HIV-infected inmates upon release, facilitate formal linkages into 
care upon discharge, and ensure continuation of ongoing HIV medical 
therapies during transition to community-based care.
    Prevention Education and Early Identification Project ($6.2 
million, CDC and NIH with HRSA and SAMHSA).--These funds will support 
the development of new and innovative early identification strategies 
to reach high risk populations and create linkages with care, with a 
focus on adolescents and women of color.
    Targeted Provider Education ($2.8 million, HRSA).--This initiative 
will target providers serving racial and ethnic minority populations at 
high risk within defined service areas--adolescent medicine, prison 
medicine providers, juvenile correctional facilities, homeless 
shelters, drug treatment, family planning providers, and OB/GYNs. It 
will also improve the capacity of minority providers/institutions to 
directly provide assistance, care and services through telemedicine and 
related efforts.
    Peer Education Community Training Institute ($2.0 million, HRSA).--
This program will support the training and development of knowledgeable 
peer educators to work within their minority communities on treatment 
education, to increase the awareness, acceptance and appropriate 
utilization of effective new therapies among HIV-infected persons.
    Provider/Peer Education Project Through Telecommunications ($1.5 
million, NIH).--This initiative supports the utilization of Internet 
technologies within minority community-based organizations to make 
available up-to-date information, multimedia presentations, re-
broadcasts of treatment education and adherence curriculum sessions, 
and serve as centralized resource for treatment information 
publications and conferences.
    Capacity Building Demonstration Project ($1.0 million, HRSA).--This 
investment expands a multi-city demonstration project focused on 
outreach to minority community-based organizations not already 
receiving federal dollars. It assists CBOs to develop and maintain 
linkages with other service sites to complete the continuum of medical 
care and support services needed for HIV infected minority populations, 
and to improve their ability to receive and retain federal grants and 
diversity their financial support to improve stability.
    Community Leadership Development ($3.0 million, OPHS).--These funds 
will supplement the Minority Community Health Coalition Grants 
administered by the Office of Minority Health, and support an 
initiative in partnership with the leadership of a broad spectrum of 
minority business, civic, and professional associations/organizations 
to develop effective strategies to engage all sectors of local 
communities to address HIV/AIDS in minority communities.
    Technical Assistance and Capacity Development ($5.0 million, CDC, 
HRSA, NIH, SAMHSA, and OPHS).--These funds will be invested in new 
approaches to delivering technical assistance and nurturing the 
development of service delivery capacity within minority communities in 
need of HIV prevention and treatment services.
    Question. What plans have been made for the $54 million contained 
in the HHS fiscal year 1999 budget? Describe the $24 million in 
continuing activities begun in fiscal year 1998, and the $30 million in 
new fiscal year 1999 activities.
    Answer. Of the $55.5 million included in the fiscal year 1999 
President's Budget as part of the Administration's Initiative to 
address HIV/AIDS among racial and ethnic minority populations, $25 
million will continue activities begun in fiscal year 1998 and $30.5 
million will support new activities. The activities supported are 
described below:
                         continuing activities
Centers for Disease Control and Prevention (CDC)
    Minority Community-Based Organizations (CBO) and Prevention ($4.0 
million).--This continues fiscal year 1998 competitive funding, through 
state and Local health departments, for racial and ethnic minority CBOs 
in 30 high-priority areas for HIV prevention in African-American and 
Latino communities.
    Prevention Among HIV Positive Persons ($3.9 million).--To continue 
fiscal year 1998 funding for five HIV prevention demonstration 
projects, especially for racial and ethnic minorities and others that 
have a tough time accessing treatment and prevention services.
    HIV Prevention Through STD Treatment ($1.7 million).--Continued 
funding from fiscal year 1998 for enhanced syphilis elimination efforts 
in 13 areas heavily impacted by the disease. Syphilis 
disproportionately impacts communities of color and early STD detection 
and treatment reduces the risk of HIV transmission.
    Prevention for Gay Men ($800,000).--Continued funding from fiscal 
year 1998 for universities and organizations to conduct behavioral 
research on the effectiveness of HIV prevention interventions for gay 
men, especially racial and ethnic minorities. Also for testing new 
interventions.
    Reducing Transmission ($400,000).--Continued from fiscal year 1998, 
these funds will help CDC develop population-specific strategies to 
better target prevention resources and help CBOs expand their ability 
to provide effective interventions.
Health Resources and Services Administration (HRSA)
    Title IV Programs of the Ryan White CARE Act ($10.2 million).--To 
support care and access to research for children, women, youth and 
families impacted by HIV/AIDS. More than two-thirds of this program's 
clients are African-American or Hispanic. This program was continued 
from fiscal year 1998.
    Integrated Services/Ryan White Special Projects of National 
Significance ($135,000).--Continued funding from fiscal year 1998 for a 
project developing models of care linking HIV ambulatory care with 
mental health, substance abuse treatment and other important HIV-
related services targeting African-Americans and Latinos in the Los 
Angeles area.
    Help for CBOs ($100,000).--To develop and pilot test a training 
program for minority CBOs in three cities by April 1999, continuing 
funding from fiscal year 1998.
    Healthy Start ($950,000).--These funds will be used to meet a new 
requirement of the continuing Healthy Start program that states all 
Healthy Start projects conduct HIV/AIDs related activities for about 1 
million childbearing-age African-American women in Healthy Start 
communities, including outreach, screening and counseling.
    Community Health Centers Service Delivery ($1.0 million).--Also 
continued from fiscal year 1998, this is designed to provide innovative 
outreach and primary care services in heavily impacted racial and 
ethnic minority communities.
Office of Minority Health (OMH)
    Minority Community Coalition Demonstration Grants ($748,225).--
Funding for this program was awarded in fiscal year 1999 to continue 
work begun through five grants in fiscal year 1998 to implement health 
education and outreach programs to reduce risk factors for HlV/AlDS 
transmission in minority communities.
    Bilingual/Bicultural Demonstration Grants ($500,000).--The Office 
of Minority Health received $500,000 in fiscal year 1999 to continue 
its work from fiscal year 1998 on projects to increase access to 
bilingual/bicultural HIV/AIDS education and prevention services for 
racial/ethnic minority populations.
    Office of Minority Health Resource Center ($341,000).--Funding for 
fiscal year 1999 will allow this center to continue providing the 
public with information and technical assistance on issues affecting 
the health of racial and ethnic minority populations. The centers 
database of minority health information, including HIV/AIDS 
information, is accessible through a toll-free telephone line (with 
Spanish and English-speaking information specialists) or a site on the 
World Wide Web.
    National Minority AIDS Council ($100,000).--To maintain the 
continued cooperative agreement between the Office of Minority Health 
and the Council, fiscal year 1999 funding was appropriated. In fiscal 
year 1998, the office of Minority Health provided $100,000 to: (1) 
cosponsor the U.S. Conference on AIDS; (2) disseminate and share 
information related to the National Minority HIV Plan, and (3) develop 
and conduct a one year national educational campaign on protease 
inhibitors.
                             new activities
Centers for Disease Control and Prevention (CDC)
    Better Targeting of Community Prevention Funding ($15.0 million).--
CDC will work with states to make HIV Prevention Community Planning 
allocation decisions reflective of their HIV demographics, and will use 
the funding for redirection to African-American and Latino communities 
as necessary.
    Pilot Prison Programs ($2.5 million).--These funds will be used to 
work with state and Local corrections officials to track the impact of 
HIV/AIDS within prisons, guide effective prevention and treatment 
interventions, and help link those about to be released to sources for 
community-based care.
    HIV-Positive Research and Prevention Models in Minority Communities 
($1.0 million).--To start research projects that evaluate innovative 
prevention interventions for HIV-positive African-American women and 
their sex partners. This will complement existing CDC research on 
developing interventions for HIV-positive men.
Substance Abuse and Mental Health Services Administration (SAMHSA)
    Center for Substance Abuse Prevention ($2.5 million).--The Congress 
has directed an additional $6 million to complement $2.5 million in the 
President's budget request to be targeted to prevention services for 
African American and Hispanic youth.
    Setaside for Linkages with HIV Services ($2.5 million).--Establish 
linkages between substance abuse treatment and HIV services within 
SAMHSA's new Targeted Capacity Expansion initiative, and place an 
earmark of $2.5 million within the program next year for an integrated 
substance abuse and HIV care component.
National Institutes of Health (NIH)
    Research Initiatives ($7.0 million).--These funds will be used to 
diversify HIV/AIDS research involving communities of color, including 
raising the number of African-American and Hispanic principal 
investigators in HIV behavioral and clinical research, providing 
outreach education to minority physicians and at-risk populations, and 
expanding population-based research on African-Americans and Hispanics.
    Question. What projects and programs are planned for the 
territories, such as the Virgin Islands, where the HIV/AIDS case rate 
is ``more than twice the national case rate?''
    Answer. The Department have been in dialogue with Delegate Donna 
Christensen to discuss the impact of HIV/AIDS on the population of the 
Virgin Islands, and strategies to effectively address the unique 
challenges it presents. The Virgin Islands had the third highest AIDS 
case rate among the states and territories for the period of July 1997 
to June 1998, with a cumulative total of 393 AIDS cases reported since 
the institution of AIDS surveillance. Among the Department's fiscal 
year 1999 activities, the Centers for Disease has set aside $500,000 in 
fiscal year 1999 for HIV prevention efforts in the U.S. Virgin Islands. 
The Office of AIDS Research in the National Institutes of Health is 
also exploring setting up a training meeting in the Virgin Islands 
provide treatment updates and cutting edge information to physicians 
and other health care providers. In other areas, these meetings have 
been the beginning of identifying a base of providers serving the HIV-
affected population and nurturing the development of future research 
interests. The Health Resources and Services Administration has been 
supporting HIV/AIDS provider education in the Virgin Islands through 
the AIDS Education and Training Program (AETC) grant awarded the New 
York Region. Through additional resources provided by the Congress in 
fiscal year 1999, the AETC program will be developing new partnerships 
with Historically Black Colleges and Universities for these activities.
                        bioterrorism preparation
    Question. Would you explain how the Department is progressing with 
its bioterrorism preparedness effort?
    Answer. In this, the first year of the DHHS anti-Bioterrorism 
initiative, the Department has launched the implementation of several 
activities. The fiscal year 1999 Anti-Bioterrorism Operating Plan, 
developed in concert with the Centers for Disease Control and 
Prevention (CDC), the Office of Emergency Preparedness (OEP) and the 
National Institutes of Health (NIH), was submitted to Congress 
outlining a variety of activities that would be undertaken this fiscal 
year.
    With respect to the funds provided to CDC for surveillance and the 
pharmaceutical stockpile, we are pleased to report that CDC has already 
prepared and released a Program Announcement to state health 
departments inviting them to apply for funds to initiate planning and 
implementation of several anti-bioterrorism activities. These funds, to 
be awarded as cooperative agreements, focus on five separate areas, for 
which a state health department could apply for one or several. These 
five focal areas are: State Preparedness Planning and Readiness 
Assessment; Surveillance and Epidemiology Capacity; Laboratory 
Capacity-Biologic Agents; Laboratory Capacity-Chemical Agents; and the 
Health Alert Network. A total of approximately $41 million will be 
available to fund cooperative agreements in these areas, broken down as 
follows:

                        [In millions of dollars]

Preparedness Planning and Readiness Assessment....................   1.3
Surveillance and Epidemiology Capacity............................  7.88
Laboratory Capacity-Biologic Agents...............................   8.8
Laboratory Capacity-Chemical Agents...............................     4
Health Alert Network..............................................    19

    With respect to the stockpile, CDC has established a branch within 
the National Center for Environmental Health with specific 
responsibility to plan for and manage the stockpile and associated 
activities. These would include the purchase, storage and delivery of 
pharmaceuticals, supplies and equipment. CDC is working closely with 
OEP on threat assessment; treatment protocols for the threats 
identified; phased-in procurement of stockpile items, by priority; and 
delivery and distribution mechanisms for contents of the stockpile. CDC 
will also engage in dialogues with DOD and DVA to discuss mechanisms 
for procurement, storage and shipment of stockpile items. Furthermore, 
there are a number of issues that are being reviewed and assessed so 
that informed decisions can be made, e.g., exact locations of various 
stockpile items; what constitutes a ``trigger'' event that would result 
in deployment of stockpile contents; long term care of victims of a 
bioweapons attack, etc.
    The Office of Emergency Preparedness has also embarked on a number 
of activities with respect to enhancing medical and public health 
consequence management at the local level. To date OEP has already 
contracted with 27 cities to develop Metropolitan Medical Response 
Systems (MMRS). In fiscal year 1999, HHS will initiate another 20 city 
systems.
    OEP is also increasing the size of the deployable National Medical 
Response Teams (NMRTs) from 24 to 48 individuals per team to ensure a 
robust response to either chemical or biological terrorist attacks. The 
amount of specialized pharmaceuticals for each team will be 
significantly augmented so that each team will have the capacity to 
treat up to 5,000 victims (an increase from the current maximum of 
1,000).
    OEP will continue to deploy, exercise and train in a multi-agency 
setting with the Departments of State, Defense, and Energy, FBI, EPA 
and state and local governments to ensure a coordinated medical 
response. It is also OEP that will detail personnel to staff the health 
and medical section of the recently established National Domestic 
Preparedness Office in the FBI.
    Question. What is CDC's role in this initiative? How many states 
are currently involved? Do you plan to collaborate with all the states? 
If so, how long will that take?
    Answer. The role of the Centers for Disease Control and Prevention 
(CDC) in the bioterrorism initiative is to develop the Nation's ability 
to detect and respond to a silent bioterrorist attack, and lead the 
public health response in the event of a terrorist attack that involves 
biological or chemical agents. To this end the CDC is intensifying its 
efforts to upgrade the nation's public health laboratory, epidemiology 
and surveillance capacities. CDC is also expanding training and 
communication capacities for State and local health agencies.
    Presently, CDC is working with the Association of State and 
Territorial Health Officers (ASTHO) and the National Association of 
City and County Health Officers (NACCHO) on issues related to the 
infrastructure needs of the State and local health departments in order 
to assure that the health communities are able to conduct an immediate, 
efficient and effective response to a biological or chemical terrorist 
attack. On an ongoing basis, CDC provides direct technical assistance 
around issues of laboratory testing and methods, epidemiology and 
surveillance, and program development and support to the nation's 
public and private health community through site visits, consultation, 
training and educational presentations. In addition, on February 26, 
1999, a request for applications was provided to 62 State, local and 
territorial health agencies. The approximate amount of funding 
available is $41,000,000. The purpose of these funds is to assist 
successful applicants in the areas of: (1) preparedness planning and 
readiness assessment, (2) enhanced surveillance and epidemiology 
capacity, (3) expanded laboratory capacity for biological and chemical 
agents, and (4) the development of a Health Alert Network. Funding will 
be awarded through cooperative agreement in mid-August 1999.
    Question. How do HHS activities mesh with the anti-bioterrorism 
efforts of other agencies, such as the Department of Justice, 
Department of Defense, and the Federal Emergency Management Agency?
    Answer. HHS is the lead Federal agency with responsibility for 
health and medical consequence management for terrorist attacks and 
natural disasters, under the Federal Response Plan managed by FEMA and 
PDD-62. The Department seeks to develop complementary medical response 
capabilities at local and national levels. HHS works closely with other 
agencies especially the relevant components of the Departments of 
Justice (DOJ), Department of Defense (DOD), Department of Veterans 
Affairs (VA), and the Federal Emergency Management Agency (FEMA)--to 
ensure that plans for managing the medical consequences of terrorist 
acts are well integrated with our emergency response systems. The 
Department has used an interagency review process to review contracts 
related to some of our bioterrorism initiatives.
    Question. How long do you think it will take for this country to 
complete its bioterrorism preparedness effort?
    Answer. Speaking for the civilian sector and within the medical and 
public health parameters, it is impossible to provide a definitive 
response to this question. After the first three to five years of 
implementation of the anti-bioterrorism strategy that DHHS has 
articulated in both the fiscal year 1999 Operating Plan and in the 
Justification of fiscal year 2000 Estimates for the Appropriations 
Committees, will be in a better position to assess what has been 
accomplished so far and what remains to be done.
                      public health infrastructure
    The President proposes that an additional $94 million be 
appropriated to fund these public infrastructure activities.
    Question. What resources are being contributed by states and the 
private sector to strengthen the public health infrastructure?
    Answer. The $94 million you mention is aimed at strengthening 
science for public health action. It includes $22 million to construct 
needed laboratories at CDC, $15 million to improve health statistics, 
and $12 million to support the National Occupational Research Agenda., 
and $45 million for the public health surveillance initiative which 
includes food safety, hepatitis C, emerging infectious diseases, and 
bioterrorism surveillance. This $94 million is supplemented by an 
additional $20 million for bioterrorism surveillance requested through 
the Public Health and Social Services Emergency Fund.
    Although most of these specific initiatives do not require 
additional contributions by the States, many of CDC's programs depend 
on state and local governments and private organizations. For example:
    States and local governments participate in cooperative agreement 
programs aimed at infectious disease. The average State in-kind 
contribution for the Emerging Infections Program (EIP) is approximately 
$233,000. California has put an additional $1.955 million in next 
year's budget for emerging infectious diseases and food safety 
activities.
    Nearly all immunization grantees provide support at some level. In 
1998, South Carolina contributed $4.8 million to supplement 
immunization program operations and purchased vaccine totaling $2.3 
million. California contributes about $3.5 million dollars annually to 
support growth and development of local and regional immunization 
registries and to enhance public-private partnerships to improve 
preschool immunization levels.
    Many of the chronic disease prevention programs require State 
matching funds. For instance, the National Breast and Cervical Cancer 
Early Detection Program and the National Program of Cancer Registries 
require States to provide $1 for each of $3 Federal funds provided.
    Question. Realistically, what will happen if these activities are 
not funded at the full proposed levels?
    Answer. These increases are needed to move us toward the public 
health system we will need for the 21st century. Without the lab 
funding, scientists would have to continue using World War II barracks 
for labs. Without the bioterrorism surveillance funding, we will 
continue having an inadequate network of State/major metro area 
laboratories for early identification and characterization of disease 
outbreaks, and will not be able to establish an Emergency Response Unit 
to provide rapid field assessments in the event of a suspected release 
of a biological agent. The food safety funding is needed to expand DNA 
fingerprinting to additional pathogens, to speed up responses to food 
borne disease outbreaks. Without the emerging infectious disease 
funding, CDC could not provide financial and technical assistance to 10 
State and large local health departments for enhanced surveillance and 
response to emerging diseases. Without the Hepatitis C funding, CDC 
would have a more limited HCV information and education campaign, and 
demonstration projects in select high prevalence States or major cities 
would not be initiated. Without the health statistics funding, CDC 
could not help States implement a major revision to the international 
coding system for mortality, or assist States in moving to electronic 
systems that will improve quality and timeliness. Without the funding 
for the National Occupational Research Agenda (NORA), there will be 
inadequate research on what needs to be done to control occupational 
hazards causing illness, injury, death, and their related economic and 
social burden.
    Question. Would you describe how the national hepatitis C public 
information campaign will operate.
    Answer. The National Hepatitis C Public Information Campaign will 
consist of a multi-layered campaign of both media and public education 
materials that seek to raise awareness of the potential seriousness of 
HCV infection; educate persons transfused before 1992 that they are at 
risk of infection and should be tested; and motivate transfusion 
recipients to seek testing and medical follow-up if infected. This 
campaign will be launched in early May 1999 with a media briefing, 
which will be followed by both print and radio public service 
announcements (PSAs), consumer outreach material for health providers, 
press releases, fact sheets, media copy, story ideas for magazines and 
TV, and public transit advertisements (PSAs). In addition, patient 
groups likely to have been transfused, health care professionals who 
care for such patients, voluntary health organizations/patient advocacy 
groups will be invited to a series of regional workshops which will 
provide education about the risk of transfusion-acquired HCV infection, 
and which will also encourage and facilitate the identification and 
testing of persons who might have acquired hepatitis C from a 
transfusion.
                             tobacco issues
Proposed increase in federal cigarette excise tax
    The President's fiscal year 2000 budget calls for a 55 cents-a-pack 
increase in the Federal cigarette excise tax to ``offset tobacco-
related Federal health care costs.'' Under the Balanced Budget Act of 
1997 (BBA: Public Law 105-33), the current Federal excise tax of 24 
cents per pack is already set to increase by 10 cents on January 1, 
2000, and an additional 5 cents on January 1, 2002. The fiscal year 
2000 budget proposes that the full 15-cents increase take effect on 
January 1, 2000. The excise tax proposals in the fiscal year 2000 
budget would generate estimated receipts of $8 billion in fiscal year 
2000, decreasing to $6.4 billion in fiscal year 2004.
    The fiscal year 2000 budget estimates that tobacco-related health 
care will cost DOD, VA, the Indian Health Service, and the Federal 
Employees Health Benefits Program $8.0 billion in fiscal year 2000, 
increasing to $8.9 billion in fiscal year 2004.
    Question. Precisely how does the Administration propose to spend 
these additional cigarette tax revenues?
    Answer. Tobacco-related health problems cost the Federal government 
billions of dollars each year. In the case of tobacco, the 
Administration is seeking reimbursement to the taxpayer for costs 
directly attributable to the tobacco companies. Exclusive of Medicaid 
and Medicare, the Administration has calculated the annual tobacco-
related health care costs in fiscal year 2000 for four major Federal 
programs. These include Veterans Affairs ($4.0 billion), the Federal 
Employees Health Benefit program ($2.2 billion), Defense ($1.6 
billion), and the Indian Health Service ($0.3 billion).
    Question. Is the revenue from the 1997 BBA tax increase already 
earmarked, and if so, for what?
    Answer. Current tobacco taxes are deposited in the general fund. 
The increases enacted in the 1997 BBA were used to help Congress and 
the Administration meet the overall deficit elimination goals, while 
also financing selected tax cuts and mandatory program improvements, 
such as the new Children's Health Insurance Program.
    Question. How much of the Federal cost of tobacco related health 
care is already compensated by current or scheduled taxes?
    Answer. The current excise taxes on tobacco products were neither 
designed nor intended to compensate the Federal government for such 
costs. Similarly, the excise taxes that States receive were not a 
factor in the recent Multistate Settlement Agreement. That agreement 
recognized that those taxes were not designed nor intended to 
compensate the States for health care costs.
                     federal medicaid reimbursement
Background
     The Medicaid statute requires states to reimburse the Federal 
government for its share of any Medicaid expenditures that states 
recover from liable third parties.\1\ Overall, HCFA pays about 57 
percent of total Medicaid benefits spending. State Governors and 
attorneys general are strongly opposed to any efforts by HCFA to 
recover a portion of the Master Settlement Agreement (MSA) payments, 
arguing that the states brought the lawsuits against the industry 
without any Federal assistance and are entitled to all the funds 
awarded in the settlement. The National Governors Association (NGA) 
supports a bipartisan Senate bill introduced by Senator Hutchison (S. 
346), which would prohibit Federal recoupment of MSA funds. The 
Administration opposes S. 346 because it lacks any guarantee that the 
funds will be used for tobacco-control and other public health 
programs. The President's fiscal year 2000 budget includes a 5 year 
projection of HCFA recoupment of MSA funds, starting at $4.6 billion in 
fiscal year 2001 and increasing to $4.8 billion in fiscal year 2004.\2\
---------------------------------------------------------------------------
    \1\ The Medicaid statute establishes that it is the state's 
responsibility ``to ascertain the legal liability of third parties * * 
* to pay for care and services available under the [state's Medicaid] 
plan.'' Under the statute, states are authorized to pursue through the 
courts third party recoveries and provide the Federal government with 
its share of any recovered funds (Sections 1902(aX25) and 1903(d) of 
the Social Security Act). The Federal Government is not authorized by 
the Medicaid statute to sue third parties directly.
    \2\ These estimates represent approximately 57 percent of the total 
annual payments to the states, before any of the adjustments, 
reductions, or offsets. Determining the specific portion of each 
state's MSA payment that reflects Medicaid reimbursement for treating 
smoking-related illnesses would be extremely complex. Although the 
state tobacco lawsuits were widely seen as an attempt to recover 
smoking-related Medicaid costs, states used a variety of legal 
approaches to sue the industry. In many cases, Medicaid claims were 
only one component of states' lawsuits. Non-Medicaid recoveries (e.g., 
damages and penalties for violations of state antitrust and consumer 
protection laws) would not be subject to any Federal share requirements 
under the Medicaid statute.
---------------------------------------------------------------------------
    Question. Are you willing to allow the states to keep all the MSA 
funds, and if so, under what conditions?
    Answer. The President has made very clear the Administration's 
desire to work with Congress and the States to enact legislation that 
resolves the Federal claim in exchange for a commitment by the States 
to use that portion of the settlement for shared priorities which 
reduce youth smoking, protect tobacco farmers, assist children and 
promote public health.
    Question. Is it reasonable to expect states to agree to 
restrictions on how they spend the money?
    Answer. Under current law, States are required to pay these amounts 
to the Federal government. The President recommends allowing States to 
keep these funds, instead of remitting them, in exchange for a 
commitment by the States to use that portion of the settlement for 
shared priorities.
    Several states are already pouring millions of dollars into 
tobacco-control programs. Some of them are using state cigarette tax 
revenues to fund the programs (e.g., CA, MA, AZ), while others are 
receiving individual settlement payments from the industry (e.g., MS, 
FL, TX, MN). Perhaps as early as this summer, 46 states will begin to 
receive MSA funds.
    Question. Is the HHS (e.g., CDC) providing assistance to states 
such as Florida and California, which are already spending millions of 
dollars on anti-tobacco activities, to help them design and implement 
effective tobacco-control policies?
    Answer. Yes, all States that have received dramatic infusions of 
funding for tobacco prevention and control in recent years have 
received in-depth technical assistance from CDC. In 1998, the four 
settlement States--Florida, Minnesota, Mississippi, and Texas--received 
in-depth technical assistance. At the State's request, CDC assisted 
Florida in every aspect of setting its primary program goals and 
building its infrastructure to implement the $200 million pilot 
program. At the State's request, CDC began working with Mississippi in 
July 1997, when the State settled with the tobacco industry. 
Consultation on evaluation have intensified since 1997 and several 
critical elements developed for the Florida pilot program evaluation 
were quickly disseminated to Mississippi. When Texas settled in January 
1998, CDC brought the Texas Department of Health staff into the 
consultation loop with Mississippi and Florida. All aspects of the 
planning program implementation and evaluation were rapidly transferred 
to Texas. Minnesota settled its case in May 1998. Minnesota Department 
of Health staff had been working with CDC prior to the settlement to 
harmonize multiple State tobacco control plans developed by State 
coalitions and advisory committees. The Minnesota Partnership for 
Action Against Tobacco, Tobacco Workgroup of the Minnesota Health 
Improvement Partnership, and the Minnesota Blue Cross Blue Shield are 
planning a comprehensive statewide tobacco prevention and control 
program. The timing, structure, and technical quality of the new 
programs funded by State settlements will be highly dependent upon the 
national leadership, coordination and technical assistance efforts 
supported by CDC.
    Question. Does HHS plan to develop a national strategy to tie 
together the tobacco-control efforts of all the states?
    Answer. In fiscal year 1999, CDC is funding all 50 States, the 
District of Columbia, and the territories, for core tobacco control 
programs, thereby establishing the National Tobacco Control Program. 
This program combines the 32 States and the District of Columbia funded 
through CDC with States previously funded by the National Cancer 
Institute. A nationwide tobacco control system will allow for 
coordination of State and Federal efforts:
    Diffusion of information on ``best practices'' in tobacco control 
and prevention;
    Build and expand upon CDC's current efforts with States;
    Put in place programs that work, and achieve economies of scale; 
and
    Evaluate outcomes to ensure that tobacco control provides a good 
return on investment, and that Federal government and States are held 
accountable for positive outcomes.
    Question. What is the current state of the research on effective 
strategies to discourage youth from smoking and chewing tobacco?
    Answer. Most people who start smoking are younger than age 18. 
Several studies have shown that school-based tobacco prevention 
programs can significantly reduce or delay adolescent smoking. Tested 
science-based programs have produced differences in smoking prevalence 
between intervention and nonintervention groups ranging from 25 percent 
to 60 percent and persisting for 1 to 5 years after completion of the 
programs. They are more effective if supplemented by booster sessions 
and community wide programs involving parents and community 
organizations and including school policies, mass media, and 
restrictions on youth access. Tobacco use prevention education needs to 
start in elementary school and continue through middle and high school 
grades.
    Numerous published studies have shown that the combination of 
enforcing laws that restrict tobacco sales to minors and educating 
merchants can reduce illegal sales of tobacco to minors. A graduated 
system of civil penalties on the retailer, including temporary 
revocation of tobacco licenses in areas where tobacco retail licenses 
are required, has been shown to be an effective enforcement strategy. 
It is critical that access restrictions be combined with a 
comprehensive program that reduces the availability of tobacco from 
friends who are not minors and limits the appeal of tobacco products.
    Tobacco advertising and promotion activities appear both to 
stimulate adult consumption and to increase the risk of youth 
initiation. Children buy the most heavily advertised brands and are 
three times more affected by advertising than are adults. One study 
estimated that 34 percent of all youth experimentation with smoking in 
California between 1993 and 1996 can be attributed to tobacco 
promotional activities.
    Finally, programs that successfully assist young and adult smokers 
in quitting can produce a quick and significant public health benefit.
              organ transplantation and allocation issues
    Question. Explain the actions taken by HHS so far to respond to the 
requirement in the omnibus appropriation to work with the IOM and the 
GAO to report on organ allocation policies of the OPTN. Describe 
working relationships HHS has with IOM and GAO.
    Answer. Based on the Omnibus Consolidated and Emergency 
Supplemental Act of 1999, and at the request of the IOM and the GAO, 
Departmental staff have met with the principals at the IOM and GAO to 
discuss the study. While the Department has not been requested by the 
IOM to be directly and substantively involved in the study to date, we 
are available to them to provide data and other forms of assistance as 
needed and have recently provided the IOM with reference documents 
cited in the OPTN regulation. The Department also testified at the 
IOM's initial Steering Committee (along with the GAO and others in the 
transplant community) and agreed to provide whatever data and analyses 
the IOM needs to complete its task.
    Question. What is the status of the required report and its 
expected date of completion?
    Answer. The IOM has announced that a series of three meetings will 
be held in March, April and May in Washington, DC and Irvine California 
to discuss various aspects of the study. It is projected that the study 
will take six months to complete and we anticipate the IOM report to be 
completed by September.
    Question. In the pending regulations for the OPTN issued on April 
2, 1998, HHS adopted the following performance goals for organ 
allocation: standardized listing criteria, standardized criteria for 
determining medical status, and policies that give priority to those 
whose needs are most urgent, taking into account differences in waiting 
times and similarities in medical status. Explain current Federal organ 
allocation policies (including the liver allocation guidelines), and 
how the HHS's performance goals are assessed relative to those 
policies.
    Answer. The current organ-specific allocation policies are 
voluntary. They are developed and implemented by the United Network for 
Organ Sharing, the federal contractor for the Organ Procurement and 
Transplantation Network (OPTN). However, these policies are not 
implemented uniformly nationwide. The OPTN permits organ transplant 
programs, states, or regions, to agree to alternate methods for sharing 
donated organs. For examples, see attached ``variances.''
    Current OPTN organ allocation policies generally allocate organs in 
a geographically tiered system under which organs are offered to 
suitable transplant patients within a local geographic areas, and if no 
suitable match can be found, then to transplant patients outside the 
local area within an OPTN region (with one exception, New York State, 
the regions are multi-state) then finally to other patients nationwide. 
Patients are ranked within each of these geographic areas based on a 
number of criteria, including medical urgency. The time patients have 
waited for a transplant generally is used as a tie breaker if more than 
one suitable candidate is waiting. The ``local'' area is typically the 
service area of the transplant program's organ procurement 
organization, although as noted above, broader sharing is permitted 
under variances that have been approved by the OPTN. In addition, for 
certain donated kidneys that are good medical matches for waiting 
patients, national sharing is required.
    The OPTN has adopted standardized minimum listing criteria and 
medical urgency (status) definitions for liver allocation, and for 
liver and heart allocation give substantial weight to medical urgency.
    The HHS performance goals build on the OPTN's practices and are 
intended to better fulfill the National Organ Transplant Act. They 
require the transplant community to rely more on medical criteria for 
organ allocation (as directed by the statute) and eliminate the 
reliance on non-medical geographic boundaries. The first two 
performance goals (standardized minimum listing criteria and uniformly 
defined status categories) build on the approach the OPTN has taken 
already for liver allocation. The third regulatory criterion--reducing 
disparities in waiting times among similarly situated transplant 
candidates, consistent with sound medical judgment--is consistent with 
the statute which directs that the allocation system treat patients 
equitably.
    The HHS performance goals are not, however, specific allocation 
policies which can be compared to current OPTN policies. Rather, these 
goals are to be implemented by allocation policies developed by the 
transplant community and, therefore, comparison of OPTN- developed 
policies with the allocation policies to be developed under the 
regulations cannot be made at this time.
    Question. What are the short- and long-term economic and social 
costs associated with current organ allocation policy?
    Answer. There are substantial short- and long-term economic costs 
associated with the current allocation system.
    As discussed in the preamble to the Department's regulation, the 
transplant industry may account for $3.5 billion in estimated billed 
charges. There are several measures that each partially describe the 
costs of the current system: wide geographic disparities in waiting 
times; deaths; reduced quality of life; and, life years unnecessarily 
lost.
    The recent 1997 Report of the OPTN: Waiting List Activity and Donor 
Procurement illustrates how waiting times vary, even in adjacent 
geographic areas. For patients with blood type O (the most common blood 
type) the median waiting time was 511 days in New York City, while the 
median waiting time in bordering northern New Jersey was 56 days. In 
Iowa, which had the shortest waiting times among the 66 OPO areas, the 
wait was 46 days, compared with neighboring Nebraska at 596 days. There 
may be other contributing causes, such as more aggressive listing, 
which could account for some of this variation; however, much of it is 
caused by the current allocation system, which emphasizes arbitrary 
geographic boundaries as a basis for organ allocation. Patients trying 
to select a transplant program under the current system are forced to 
decide how to factor these longer waits, an concomitant increased risk 
of death while waiting into choices about which program to select.
    Another indication of the costs of the current system are the 
deaths of patients awaiting transplants. Under the current system, 
deaths for patients awaiting transplants have increased from 1,502 in 
1988 to 4,065 in 1996. OPTN modeling of alternative liver allocation 
policies suggests that some of these deaths are unnecessary.
    For patients awaiting kidney transplants, (over two-thirds of the 
waiting list and over one-half of the annual transplants), the costs 
are both unnecessary deaths which occur while waiting (about 1,800 in 
1996) and a diminished quality of life while on dialysis.
    A cost which represents yet another measure of the costs of the 
current system is the avoidable years of life lost. It is difficult to 
quantify the magnitude of these costs, as compared to those life years 
unavoidably lost due to the general shortage of donated organs or other 
factors. This difficulty stems from the fact that neither the OPTN nor 
others have developed models to demonstrate the magnitude of this cost 
on organs other than livers. The liver modeling results, however, are 
instructive. Both the OPTN model and a model which uses somewhat 
different assumptions suggest that alternatives to the OPTN-developed 
liver allocation system that reduce the reliance on the current 
artificial ``local'' geographic boundaries, even alternatives that do 
not fully address the regulation's three performance goals, would 
``save'' life years. In addition, the alternatives modeled reduced 
deaths overall.
    Question. In December 1996, 3 days of departmental hearings on 
organ transplantation were held. In December 1997, the Clinton 
Administration launched the National Organ and Tissue Donation 
Initiative whose goal is to increase the national supply of organs by 
20 percent in 2 years. What has the Department done to pursue the 
realization of that goal.
    Answer. In the 14 months since the launch of this multi-faceted and 
multi-year Initiative, several of the Initiative's proposed projects 
that show promise of increasing donation have been implemented or 
initiated. As an example, the Initiative called for a Federal rule 
requiring hospitals to refer all deaths to organ procurement 
organizations (OPOs). In response, HCFA issued a final rule, effective 
August 21, 1998, for Conditions for Hospital Participation in Medicare 
and Medicaid Programs that requires referral of all deaths and imminent 
deaths to the OPO and adequate training for hospital-based staff who 
request donation. Modeled after Pennsylvania's successful required 
referral law, we anticipate that this rule, in conjunction with other 
Initiative efforts, will yield a 20 percent increase in donation by 
August 2000. In support of this rule, HCFA and HRSA are jointly 
planning conferences to develop guidelines for training hospital-based 
requesters. These conferences will also review best practices for 
hospital and OPO collaboration and their interaction with potential 
donor families.
    In 1998, the Department sponsored a 2-day conference to identify 
best practices for evaluating strategies to increase donation. This 
conference led to the identification of a number of important 
approaches which need to be further explored. As a result of the 
increase in the 1999 HRSA Appropriation, a new extramural grant program 
is currently being developed which will focus on methods to increase 
donation. In addition, the Department hopes to serve as a model for all 
government agencies and employers by encouraging HHS employees to 
consider donation. Donation information materials have been provided to 
approximately 100 federal government agencies for distribution, and pay 
stubs have included donation messages.
    The Initiative also provides electronic information to the public 
through its own web site (www.organdonor.gov), as well as a web site 
developed in partnership with the National Kidney Foundation 
(www.kidney.org) to provide information to donor families and the 
general public, and another through the University of Michigan 
(www.transweb.org/journey) to educate school-age children about 
donation and transplantation.
    Question. Discuss any partnership agreements achieved or planned 
between the HHS and nongovernmental organizations to increase organ and 
tissue donation.
    Answer. HHS is developing a broad national partnership of public, 
private, and volunteer organizations to assist in the implementation of 
the Initiative. A Partnership Kit has been developed with resources to 
aid in educational activities. The following examples show the variety 
of organizations and activities in several arenas supporting the 
National Organ and Tissue Donation Initiative:
    In the health care community, the American Medical Association and 
the American Academy of Family Physicians are partnering with HHS to 
encourage physicians to make donation materials available in their 
offices and to discuss donation with their patients.
    The legal field is involved through a partnership between the 
American Bar Association and HHS in which attorneys are encouraged to 
discuss donation with their clients during estate planning.
    In the educational setting, the American College Health 
Association, a national organization with 900 member institutions, has 
been funded by HRSA in a demonstration project that will implement and 
test the effectiveness of college campus campaigns to increase 
donation.
    The faith community has supported a number of efforts, including a 
partnership between the Congress of National Black Churches, 
representing 65,000 congregations with an excess of 20 million 
parishioners, and HHS in a national project to educate its members 
about organ, tissue, and bone marrow donation.
    Businesses also are involved in partnerships, such as The Home 
Depot's program to conduct organ and tissue donation education 
activities for employees.
    In one of several efforts to focus on minority issues, the National 
Minority Organ and Tissue Transplant Education Program is designed to 
empower minority communities to become involved in education activities 
to increase the number of minority donors.
    Donor and recipient groups are involved in awareness and 
appreciation programs, such as the National Donor Recognition Ceremony 
and Workshop conducted in collaboration with the National Kidney 
Foundation's National Donor Family Council.
    National Donor Day--Saturday February 13, 1999. The ``celebration 
of life'' volunteers from the transplant community prepared a one-day 
blitz to promote donor awareness. HHS, along with the Saturn 
Corporation and the United Auto Workers and other nationwide groups, 
partnered in this event. Volunteers visited participating Saturn 
Corporation automobile dealers and learned how donating ``Five Points 
of Life''--whole blood, platelets, umbilical cord blood, bone marrow, 
and organ and tissue donation, can extend life to others.
                      slow spending of tanf funds
Background
     The 1996 welfare reform law replaced the Aid to Families with 
Dependent children (AFDC) program with TANF. The TANF program provides 
fixed block grants to the states. The basic TANF block grant is $16.5 
billion annually for fiscal year 1997 through fiscal year 2002. TANF 
also includes supplemental and bonus funds. TANF grants remain 
available for use by the states without fiscal year limitation. Though 
TANF grant awards are made quarterly, actual cash (outlays) is not 
transferred to the states until they make expenditures in their TANF 
programs. As of September 30, 1998, TANF balances (grants that have not 
been outlaid to the states) totaled $7.1 billion. Some of this balance 
reflects funds obligated but not yet expended by the states. The 
Department of Health and Human Services (DHHS) estimates that obligated 
and unexpended TANF funds totaled between $3 billion and $3.5 billion 
at the close of fiscal year 1998.
    The President's fiscal year 2000 budget proposes some savings from 
freezing a special supplemental grant targeted to states with high 
population growth and low historical welfare spending per poor person. 
An estimated 17 states qualify for this supplemental grant; most of 
these states are in the South or West.
    Question. What accounts for the slow spending of TANF funds?
    Answer. We have received a great deal of information from States 
regarding the reasons for the delays in their TANF spending.
    First, caseloads have dropped sharply, and many States did not 
expect or budget for such a decrease. State legislators generally 
appropriated fiscal year 1998 TANF funds in the first half of calendar 
year 1998. Since then, unexpectedly sharp caseload declines gave States 
additional funds to serve needy families. However, it takes time to 
develop and implement new spending initiatives. Many States required 
legislative action to reprogram large amounts of funds from one 
activity, such as cash assistance, to another such as post-employment 
supportive services. Fiscal year 1999 legislatures are now in session, 
and States are now appropriating the additional funds resulting from 
such unexpectedly large caseload declines.
    Second, many States are still continuing to change the focus of 
their TANF programs from income support to work support. State are 
finding that many of families remaining on the rolls face severe 
barriers to employment, such as low levels of education and skills, 
substance abuse, mental health problems, and disability. These barriers 
can require major investments to overcome. As many TANF families begin 
to hit time limits, it will become critical for States to make 
additional investments with their TANF funds in order to get these 
families into the workforce and stay employed.
    According to the latest data, 17 States obligated all their fiscal 
year 1997 and fiscal year 1998 TANF funds: Alaska, Arkansas, 
California, Connecticut, Delaware, Illinois, Indiana, Maine, 
Massachusetts, Mississippi, Missouri, Montana, Ohio, Oregon, Texas, 
Virginia and Wyoming. We expect to see States obligating and spending 
more of their TANF funds in fiscal year 1999, as State appropriations 
decisions made this year move toward spending more on work activities 
and the intensive services necessary to help recipients find jobs and 
succeed in the workforce.
    Question. Have states increased or decreased their spending per 
family under TANF compared with AFDC? By how much?
    Answer. AFDC and TANF spending per family measures are not directly 
comparable, since States have much more flexibility under TANF to 
invest in services that families need to move from welfare to work and 
to provide supports for working families. States are offering a wider 
array of services under TANF than was allowable under the former AFDC, 
JOBS and the Emergency Assistance programs. In addition, States are not 
required to report on the number of families receiving services that 
are not defined as ``assistance,'' such as one-time only assistance. 
Therefore, any figure showing TANF spending per case will not reflect 
all families being served by States under TANF.
    However, it is possible to compare spending on cash assistance 
between the two programs. In fiscal year 1996, the last full year of 
the AFDC program, the total average monthly benefit per case was $374. 
In fiscal year 1998, the total average monthly spending per case on 
``cash and work-based assistance'' was $383, a two-and-a-half percent 
increase.
    Question. The President's budget projects increases in TANF outlays 
in fiscal year 2000. Do these projections indicate expected caseload 
increases, or do you expect spending per TANF family to increase?
    Answer. We expect TANF outlays to increase in fiscal year 2000 due 
to increases in State spending on TANF families. As TANF caseloads have 
declined, State are finding that many of families remaining on the 
rolls face severe barriers to employment, such as low levels of 
education and skills, substance abuse, mental health problems, and 
disability. These barriers can require major investments to overcome. 
These investments will require greater than average TANF funding per 
recipient.
    In addition, some States have not had time to enact legislation to 
shift the focus of their TANF programs from cash assistance to work 
support. We expect a substantial increase in TANF spending as State 
appropriations decisions made last year translate into additional 
expenditures for new services.
    Question. The budget documents show a balance of $7 billion in 
unexpended TANF grants at the end of FY1998. The DHHS has been 
reporting a different balance of between $3.0 billion and $3.5 billion. 
Could you explain the difference between the budget numbers and the 
DHHS figures?
    Answer. The $3 billion figure represents the cumulative unobligated 
balance (from both fiscal year 1997 and fiscal year 1998 TANF funds) as 
reported by States as of September 30, 1998. The unobligated balance 
represents the amount of TANF grants that States have not yet obligated 
(that is, entered into contracts or made other binding spending plans). 
The $7 billion figure is the cumulative TANF cash balance remaining in 
the Treasury as of September 30, 1998. This balance represents funds 
that have not been drawn down (or, ``outlaid'') by States and includes 
funds that States have already committed to spend.
    Question. DHHS reports that states have obligated, but have yet to 
expend some funds. What types of activities are these obligations for? 
Do subgrants to counties or other localities count as state obligations 
in the TANF program?
    Answer. Obligations refer to amounts States have committed to 
spend, but have not yet spent. According to our financial regulations, 
obligations represent the amount of orders placed, contracts and 
subgrants awarded, and similar transactions that will require payment 
by the State during some future period. An example of this may include 
funds a State has committed to pay under a contract for computer 
systems, but which the State has not yet paid. Subgrants to counties or 
other localities may count as State obligations in the TANF program.
    Question. How much of the fiscal year 1998 balance reflects state 
``rainy day'' funds? Are these funds adequate, inadequate, or more than 
adequate to meet the extra costs of a recession should it start this 
year?
    Answer. States are not required to report information on their 
``rainy day'' funds, so we do not know how much of the unobligated 
balance has been dedicated by States for that purpose. As part of the 
welfare reform legislation, Congress gave States the authority to save 
unspent TANF funds for future contingencies. In the event of a 
recession, States will have these TANF funds available, along with 
funds from the Contingency Fund. As part of the fiscal year 2000 
Budget, we are proposing to uncap the Contingency Fund to make it more 
responsive to State needs during an unforeseen recession.
    Question. What is the Administration's rationale for proposing to 
freeze the supplemental grant targeted to states with high population 
growth and low historical expenditures per poor person?
    Answer. The TANF Supplemental Grants were intended to provide 
additional funds to States with high population growth and/or low per 
capita welfare spending that might be burdened by a fixed TANF block 
grant. However, since the enactment of welfare reform, the 17 States 
receiving these Supplemental Grants have on average experienced the 
same, or even greater, caseload declines as other States. Therefore, 
the Administration proposes to freeze these Supplemental Grants for 
fiscal year 2000 at their fiscal year 1999 levels. The 17 States will 
still receive Supplemental Grants totaling $159.7 million in fiscal 
year 2000, but won't receive the automatic 2.5 percent increase 
authorized by PRWORA.
Background
    The President's fiscal year 2000 budget proposes a series of 
welfare-to-work initiatives, including a $1 billion extension of the 
Department of Labor's welfare-to-work grant program, welfare-to-work 
housing vouchers, and job access grants. It also proposes a major child 
care initiative to increase funding for the Child Care and Development 
Fund (CCDF) by $7.5 billion over the next 5 years. Under TANF, states 
also have the flexibility to use block grant funds for welfare-to-work 
and child care activities.
    Question. Given the amount of unspent TANF money available, are 
these additional dollars necessary?
    Answer. States need to invest both TANF and Welfare to Work (WtW) 
resources to ensure that all welfare recipients, including those with 
the greatest barriers to employment, can move to self-sufficiency 
within the time limits.
    The President's Budget requests $1 billion to continue the work 
begun under the current Welfare to Work program, which is administered 
by the Department of Labor and provides funds to State and local areas 
that help the hardest-to-employ welfare recipients and non-custodial 
parents get and keep their jobs.
    The proposed reauthorization of the Welfare to Work program has two 
main objectives:
    To continue to provide transitional assistance to hard-to-employ 
current and former welfare recipients living in high-poverty areas; 
and, To strengthen families by helping noncustodial parents increase 
their employment and earnings so they can better support their 
families.
    The unspent TANF money available is simply inadequate to meet these 
goals. (It is important to note that 17 States have obligated all their 
TANF funds for fiscal year 1997 and fiscal year 1998, and these States 
do not have ``unused'' TANF funds left to spend on child care and 
Welfare-to-Work services.) States are finding that many of the families 
remaining on the rolls face barriers to employment such as limited 
education and skills, substance abuse or mental health problems, or a 
disability. These barriers can require major investments to overcome--
investments greater than the average TANF funding per recipient. WtW is 
the only program with funds dedicated to the hardest to serve welfare 
recipients. Furthermore, WtW funds can be spent on those who have 
exhausted their TANF time limit but are still in need of employment 
services.
    Question. Are there any work activities funded under the Department 
of Labor's welfare-to-work grant program that cannot be funded under 
TANF using already available funds?
    Answer. States need to invest both TANF and WtW resources to ensure 
that families with the most intensive service needs (such as those with 
low skill levels, substance abuse problems, and disabilities) can move 
to self-sufficiency. The WtW grant program has a more specific purpose 
than TANF, with funds are directly targeted to help harder-to-serve 
TANF recipients and non-custodial parents. As caseloads decline, States 
are finding that many of the families remaining on the rolls face 
barriers to employment such as limited education and skills, substance 
abuse or mental health problems, or a disability. These barriers can 
require major investments to overcome--investments greater than the 
average TANF funding per recipient. WtW is the only program with funds 
dedicated to the hardest to serve welfare recipients. Furthermore, WtW 
funds can be spent on those who have exhausted their TANF time limit 
but are still in need of employment services. Therefore, additional WtW 
funds will ensure that the hardest-to-employ welfare recipients living 
in the highest poverty areas will get the help they need to secure work 
and succeed in the work place.
    If States use WtW funds to help these very important groups of 
individuals, they need not amend their State TANF plans or possibly 
redefine their State statute. Whereas, to fully help non-custodial 
parents using TANF funds may well involve defining this parent as a 
member of an eligible TANF family. This could easily mean a need to 
alter State law and amend the TANF plan.
    Furthermore, some States wish to reserve a share of their Federal 
TANF funds for a rainy day; they want to know they have additional 
funds available should they experience a population increase or a 
regional recession.
    As we continue to move persons off the rolls, it is essential that 
all of these funds be available to meet the most intense needs of the 
harder-to-serve population.
    Question. Can states fund the activities of the proposed welfare-
to-work housing voucher and job access grant programs with TANF funds?
    Answer. TANF funds may be used in a wide variety of ways that are 
consistent with the goals of the TANF program. The uses may include 
providing housing assistance and other supportive services that help 
families attain and maintain employment. Examples of such supportive 
services include, but are not limited to, transportation, child care, 
job readiness assistance, case management, job training and re-training 
activities, job retention services, and post-employment follow-up 
services.
    The Department of Housing and Urban Development welfare-to-work 
rental voucher initiative supports our welfare-to-work efforts by 
providing rental subsidies to families. These subsidies follow the 
family and enable them to move to decent housing that is closer to 
employment and training opportunities or service sites such as day care 
facilities without requiring the family to incur excessive rental 
costs. Thus, this program will further help TANF-eligible families 
transition from welfare to work.
    Similarly, the Department of Transportation has also contributed to 
the welfare reform efforts through its Job Access program. This program 
assists States and localities in developing flexible transportation 
services that connect welfare recipients and other low income persons 
to jobs and other employment related services. States may use Federal 
TANF funds to meet the cost-sharing requirement of the Jobs Access 
program.
    Question. Can states spend the currently unused TANF money on child 
care?
    Answer. As of September 30, 1998, 17 States had obligated all their 
fiscal year 1997 and fiscal year 1998 TANF funds, and therefore do not 
have any ``unused'' funds to spend on child care. The remaining States 
may spend their unobligated balances on child care, but may be 
reluctant to do so for several reasons. While caseloads have dropped 
dramatically nationwide, States face critical challenges as they 
attempt to help the remaining welfare families move into the workforce 
and gain self-sufficiency. This next stage of welfare reform may prove 
costly, and States may be reluctant to use their TANF funds on child 
care when they anticipate new spending on the increasing share of their 
caseload with major barriers to employment such as illiteracy, 
substance abuse and mental health issues. Also, some States may choose 
to use their unobligated balances as ``rainy day'' reserves to cover 
the increased costs of an unforeseen economic downturn.
    Our child care initiative is designed to provide assistance low 
income working families--not necessarily welfare families. This 
proposal prevents welfare from being the only way for low-income 
families to gain access to child care. In far too many parts of the 
country, the only child care available is for welfare families making 
the transition to work. Low- income families, many of whom never have 
been on welfare, pay on average 25 percent of their incomes on child 
care.
    Our requested increase of $7.5 billion over 5 years for the Child 
Care and Development Fund will dramatically increase the availability 
and affordability of child care for low income working parents. These 
funds, together with the existing child care funds, will enable States 
to provide assistance for an additional one million children by 2004, 
for a total of 2.4 million children. We are also requesting $3 billion 
for the Early Learning Fund, which will provide challenge grants to 
States and communities to promote school readiness, and improve early 
learning and the quality and safety of child care.
                       uses of tanf block grants
Background
    A state is permitted to use Federal TANF funds for all activities 
it was allowed to conduct under welfare programs operated under pre-
TANF law: cash benefits, emergency aid, child care, and work and 
training activities. Additionally, states may use TANF funds for 
activities ``reasonably calculated'' to accomplish the purposes of the 
program.\3\ Though the activities permitted under TANF are relatively 
broad, providing Federal TANF ``assistance'' to a family triggers the 
application of certain program requirements to that family: work 
requirements, child support requirements, reporting requirements, and 
time limits. The DHHS issued proposed regulations on November 20, 1997 
detailing rules for the expenditure of funds and application of TANF 
requirements. Final regulations have yet to be published.
---------------------------------------------------------------------------
    \3\ The stated purposes are to provide assistance so that children 
may be cared for in their own homes; end dependence of needy parents on 
government benefits by promoting job preparation, work, and marriage; 
prevent and reduce the incidence of out-of-wedlock births; and 
encourage the formation and maintenance of two-parent families.
---------------------------------------------------------------------------
    Question. In proposed regulations, DHHS sets the rules for 
expenditure of funds, including defining when TANF requirements apply 
and what constitutes a family receiving TANF ``assistance.'' When will 
these regulations be finalized?
    Answer. We expect the regulations to be published this spring.
    Question. Do you think that the absence of final regulations about 
the uses of TANF funds has slowed state program innovations and 
contributed to the slow spending of TANF funds?
    Answer. While some States may be hesitant to undertake new spending 
initiatives in the absence of final rules, we have advised them that 
they may operate their TANF programs in accordance with a reasonable 
interpretation of the statute until we issue the final rules. Thus, 
States could undertake new initiatives that were consistent with a 
reasonable interpretation of the statute without fear of incurring 
penalties. We have also used every available occasion (such as 
conferences and meetings with States, intergovernmental groups, and 
advocates) to inform States and other interested parties there are 
clear opportunities to use TANF funds in a variety of innovative ways 
to help all families attain and maintain self-sufficiency. Finally, we 
have emphasized the importance of helping harder-to-serve family 
members overcome employment obstacles, so that all clients have the 
chance to succeed.
Background
    TANF permits limited transfers (up to 30 percent of the grant) to 
the Child Care and Development Fund (CCDF) and Social Services Block 
Grant (SSBG). For fiscal year 1997 through fiscal year 2000, transfers 
to S SBG are ftuther limited to 10 percent of the TANF block grant. For 
fiscal year 2001 and later years, transfers to SSBG are limited to 4.25 
percent of the TANF block grant. The President's budget proposes to 
accelerate to fiscal year 2000 the scheduled reduction in the share of 
TANF funds that may be transferred to SSBG.
    Through June 30, 1998, states have transferred only 3 percent of 
their fiscal year 1998 TANF grant to CCDF. Through June 30, l998, 
states transferred 5 percent of their fiscal year 1998 TANF grant to 
SSBG.
    Question. Why do you think states are using only a small part of 
their authority to transfer funds from TANF to the CCDF?
    Answer. Twenty-eight States took advantage of the option to 
transfer TANF funds to child care in fiscal year 1998, transferring 
some $740 million. The amount of TANF funds transferred to child care 
tripled between fiscal year 1997 and fiscal year 1998. In addition, 
some States may be reluctant to transfer their TANF funds to child care 
when they anticipate new spending on the portion of their welfare 
caseload with major barriers to employment. States may also save some 
portion of their TANF funds as ``rainy day'' reserves to cover the 
costs associated with an unforeseen economic downturn.
    Question. What types of requirements apply to transfers to the 
Child Care and Development Fund. Is there a deadline for the obligation 
and expenditure of these funds?
    Answer. Funds transferred from TANF to the Child Care and 
Development Fund (CCDF) are subject to the requirements applicable to 
the Discretionary Fund of the CCDF. As indicated in the CCDF Final Rule 
(45 CFR 98.60), States must obligate their Discretionary Funds either 
in the year they are received (or transferred from TANF) or in the 
succeeding fiscal year. They must liquidate (expend) their funds by the 
end of the third fiscal year. Thus, if a State transfers funds to child 
care in fiscal year 1999, it must obligate these funds by the end of 
fiscal year 2000 and must expend these funds by the end of fiscal year 
2001.
    Question. What is the Administration's rationale for proposing to 
accelerate (to fiscal year 2000) the scheduled reduction in the share 
of TANF funds that may be transferred to SSBG?
    Answer. As you may recall, Congress included a provision in the 
Transportation Equity Act of the 21st Century (Public Law 105-178) to 
reduce the percentage of TANF funds that States may transfer to Title 
XX from 10 percent to 4.25 percent, beginning in fiscal year 2001. In 
light of the $471 million increase that we are proposing for the Title 
XX SSBG program for fiscal year 2000, our budget recommends that 
Congress take action to make the transfer cap reduction to 4.25 percent 
effective in fiscal year 2000. This approach will allow States to spend 
their TANF funds for the investments critical to help welfare families 
move into the workforce and gain self-sufficiency, while providing the 
States with additional funds for other social services and populations.
    Question. Approximately how many persons or families have been 
served by TANF transfers to SSBG? What types of services have states 
funded using TANF transfers to SSBG?
    Answer. States are not required to report how many persons they are 
serving specifically with TANF transfers to SSBG. States may use funds 
transferred from TANF to SSBG for the same type of services funded with 
their annual SSBG allotment. Data show that most States use SSBG to 
support child care (47 States), child protective services (46 States), 
home-based services (45 States), and case management (38 States). 
States reported spending 22 percent of funds on child welfare (foster 
care, adoption and protection services), 15 percent on child care, 10 
percent on home-based services, and 7 percent on prevention and 
intervention services.
                            contingency fund
    TANF includes a ``contingency fund,'' which would provide matching 
grants to states that meet certain criteria. There are both state and 
national caps for the contingency fund. A state's contingency funds are 
limited in each year to 20 percent of its TANF block grant, and 
nationally contingency funds cannot be more than $1.96 billion. To 
qualify for contingency funds a state must have high and increasing 
unemployment or food stamp caseloads 10 percent higher than in fiscal 
year 1995. It must also meet a maintenance of effort requirement 
stricter than the overall TANF maintenance of effort requirement. To 
date, one state received contingency funds. The President's fiscal year 
2000 budget proposes to rescind the TANF contingency fund and replace 
it with a new, uncapped contingency fund that is not described.
    Question. What analysis has the Administration done to show that 
the current contingency fund would be inadequate to meet the needs of 
the states during a recession? What provisions of the contingency fund 
would bar needy states from receiving sufficient Federal funds: the 
unemployment or food stamp caseload qualifying criteria, the spending 
requirements, or the caps on state and national contingency funds?
    Answer. We have not had the opportunity to examine the adequacy of 
the Contingency Fund during a recession. The Administration's budget 
estimates assume that favorable economic conditions will continue. 
Furthermore, it would be difficult to develop an accurate analysis of 
the demand on the Contingency Fund under a recession. It would be 
insufficient to estimate the number of States that would meet the 
Fund's trigger requirements, as other uncertain variables include the 
number of States meeting the Contingency Fund maintenance of effort 
(MOE) requirements and the amount of expenditures that exceed the MOE 
level.
    Some members of Congress, States, and advocacy groups and have 
criticized the Fund's cap, saying that the $1.96 billion would be 
insufficient in the event of an unforeseen economic downturn. As stated 
in last year's Report on the Status of the Contingency Fund, the 
Administration noted that funding of the Contingency Fund would likely 
be insufficient during a severe recession.
    Question. The budget does not specify the details of the 
Administration's contingency fund policy. Aside from uncapping it, what 
changes to the contingency fund do you propose to make?
    Answer. The Administration is currently developing a legislative 
proposal that will make the Contingency Fund more responsive to State 
needs in the event of an unforeseen economic downturn. We will transmit 
it to Congress as soon as it is finalized.
    Question. Has the Administration done any analysis to show what the 
effects of its policies would be under varying economic circumstances? 
For example, how much would the proposal cost if there were a recession 
comparable to the 1990-91 recession?
    Answer. It is not possible to develop an accurate estimate of the 
need for Contingency Funds under a recession like that of the early 
1990s. Due to the changes made to the Food Stamps program by welfare 
reform, comparable Food Stamps caseload data for that time period is 
not available to assess the number of States that would have meet the 
Food Stamp trigger.
    However, in last year's Report on the Status of the Contingency 
Fund, we provided some context by looking at the number of States that 
would have met the unemployment rate trigger during the early 1990's 
and the number of months they would have done so. During the period 
1991 though 1994, 39 States would have met the unemployment trigger for 
at least one month, and would have been eligible to receive provisional 
payments from the Contingency Fund in 34 percent of the months during 
that time period. To assess the adequacy of the Contingency Fund, one 
would need to know how many States would meet the Contingency Fund MOE 
requirements and the amount of expenditures exceeding the MOE level.
                     administrative cost allocation
Background
    Before the 1996 welfare law, states often charged ``common'' 
administrative costs for administering cash welfare, Food Stamps, and 
Medicaid to the Aid to Families with Dependent Children (AFDC) program. 
When AFDC was replaced by the TANF block grant, all costs charged to 
AFDC--including common administrative costs for administering AFDC, 
Food Stamps, and Medicaid--were folded into the TANF block grant. The 
Agricultural Research Act of 1998 prospectively reduces the Federal 
reimbursement for food stamp administrative costs by the food stamp 
``share'' of common administrative costs included in the TANF block 
grant. The President's fiscal year 2000 budget proposes to make similar 
reductions in the Federal reimbursement for Medicaid administrative 
costs. Additionally, the Administration now requires states to split 
the common costs for administering TANF and other public assistance 
programs with all ``benefitting programs,'' including food stamps and 
Medicaid.
    Question. How much will fiscal year 2000 Food Stamp and Medicaid 
spending be increased because of the Administration's requirement that 
common costs be split among TANF, food stamps, and Medicaid?
    Answer. With the repeal of the AFDC program and the enactment of 
TANF, states began to amend their public assistance cost allocation 
plans to charge activities to programs in the proportion to which the 
programs benefitted from those activities. This change in the way 
states began to allocate costs was consistent with OMB circular A-87 
and generally accepted accounting principles, although it differed with 
general practice under the AFDC program, where legislative history 
called for common costs to be assigned to AFDC. Our projections, which 
are based on determinations pursuant to Section 16(k) of the Food Stamp 
Act, include the following increases as a result of the way states are 
allocating common costs:

----------------------------------------------------------------------------------------------------------------
                                                              1999     2000     2001     2002     2003     2004
----------------------------------------------------------------------------------------------------------------
Food Stamps...............................................     $226     $230     $235     $240     $250     $255
Medicaid..................................................      295      305      325      345      375      405
----------------------------------------------------------------------------------------------------------------

    With the fiscal year 1999 President's Budget, the administration 
required states--including those that had not already submitted revised 
cost allocation plans--to move to this cost allocation approach for 
TANF, Food Stamps and Medicaid, and at the same time, it proposed 
reducing Medicaid and Food Stamp administrative costs to recapture 
these costs that were included in the TANF block grant. The Food Stamp 
administrative expenditures were reduced as part of the Agriculture 
Research, Extension, and Education Reform Act of 1998. In the fiscal 
year 2000 budget, the administration again proposes to reduce Medicaid 
administrative costs, which are increasing as states allocate costs 
among all three programs. This proposal is projected to save $1.2 
billion over five years, net of increased TANF spending.
    Question. Do any programs other than Food Stamps and Medicaid have 
to pick up administrative costs formerly charged to AFDC/TANF?
    Answer. All Federal programs are expected to allocate and charge 
administrative costs based on their relative benefit unless there are 
statutorily-based exceptions. The only major program that States should 
have been charging some administrative costs to AFDC is the Child 
Support Enforcement program. Current ACF regulations prevent these 
administrative costs from being paid for by the Child Support 
Enforcement program--which has an enhanced Federal matching rate. The 
amount and extent of these potential charges is not easily known, but 
they would be relatively small in comparison to the Medicaid and Food 
Stamps cost allocation determinations made under the Agriculture 
Research, Extension and Education Reform Act.
    Question. The Administration's proposal cuts Medicaid spending 
based on pre-1996 common administrative costs, when AFDC eligibility 
conferred automatic Medicaid eligibility. The 1996 welfare law delinked 
cash welfare and Medicaid eligibility. How many states still determine 
cash welfare (TANF) eligibility in a different office from where 
Medicaid eligibility is determined?
    Answer. Very few states still determine TANF eligibility in a 
different office from where Medicaid eligibility is determined. 
Specifically, five States' staffs are not co-located and six States 
comprise both joint and separate staffing (depending on the county in 
some States).
                               head start
    Question. Head Start has received large increases in funding in 
recent years. What assurances can you give the Committee that these new 
funds can be used effectively without sacrificing the quality of Head 
Start?
    Answer. In the last several years Head Start has made a significant 
investment in improving quality in Head Start. We have made available 
significant funding increases to programs to allow them to address 
quality issues, particularly issues related to improving the quality 
and number of staff employed by Head Start programs. Salaries have been 
increased, training opportunities have been expanded and new, needed, 
staff have been hired. At the same time we have been investing in 
quality we have been clear to programs that they must use these 
resources well and deliver services of consistently high quality. Where 
programs have failed to do this, we have advised them of the need to 
improve and have made available support resources to help them. 
Programs that could not or would not improve were terminated and, in 
fact, since 1993 more than Head Start 100 programs have either been 
terminated or have relinquished their grant.
    In fiscal year 2000, we will continue this ``carrot and stick'' 
approach. Last year's Head Start reauthorization increased the 
allocation of new funds dedicated to quality. Based on this formula, 
the President's budget request, if appropriated, would provide for 
almost $257 million in quality improvement funds. These funds will 
allow programs to continue to invest in program improvement by 
improving staff salaries to attract and retain quality staff, by adding 
additional staff in such important areas as family workers and by 
improving staff training. We will continue the efforts we began in 
fiscal year 1999 to focus a portion of these new funds on increasing 
the number of Head Start teachers with degrees in early childhood 
education, or related fields, as required by the recently reauthorized 
Head Start Act. We will also continue to insist that programs provide 
high quality services or we will move to discontinue their grant. This 
Administration is fully committed to Head Start quality and the 
President's proposed fiscal year 2000 budget will continue previous 
efforts to assure that every enrolled child and family in Head Start 
receives services of consistently high quality.
    Question. The President has stated a goal of serving 1 million 
children in Head Start by 2002. Was the budget request derived by 
calculating the amount needed to reach that goal, irrespective of any 
needs assessment? What is the motivation behind such a large funding 
increase, given the fact that the program has already grown so 
substantially?
    Answer. The President has long been committed to serving 1 million 
children in Head Start. According to the most recent census data, there 
are almost 1.8 million poor children in this country who are either 
three or four years old, as well as 2.6 million poor children under the 
age of three. The President's commitment to serving 1 million children 
will meet just a small percentage of this need.
    The fiscal year 2000 budget proposal was made in a time of tight 
budget constraints and the need to make difficult decisions about which 
programs should be considered as priorities, proposed for funding 
increases, and which programs should not. The President's fiscal year 
2000 increase, if appropriated, would represent the largest single year 
increase for Head Start and is intended to enhance program quality and 
continue the path started several years ago of increasing enrollment to 
reach, eventually, 1 million children. Although Head Start has seen 
significant growth in the last several years, this Administration 
believes this increase is important to both allow Head Start programs 
to reach out to additional, unserved children and families as well as 
to allow programs to better meet the needs of currently enrolled 
families, many of whom are being significantly impacted by welfare 
reform and the need to find quality child care for their children. 
While much has been done in the last several years, there continues to 
be much that needs to be done to give as many of America's 
disadvantaged children as possible a true ``Head Start.''
                        administration on aging
    Question. The President is requesting $125 million for a new 
``National Family Caregiver Support Program.'' Could you explain the 
goals of this program and how the funds will be spent? Will you take 
steps to gain authorization for this program?
    Answer. The fiscal year 2000 budget includes a new $125 million 
National Family Caregiver Support Program which will provide essential 
assistance to approximately 250,000 families caring for an older 
relative. Legislation to authorize this Program was submitted to 
Congress on January 15th, 1999. The National Family Caregivers Support 
Program consists of five components.
  --Individualized information on available resources to support 
        caregivers;
  --Assistance with locating services from a variety of private and 
        voluntary agencies;
  --Caregiver training (e.g., the easiest and safest way to give 
        someone a bath), support groups, and counseling to help 
        caregivers cope better with the emotional & physical stresses 
        of dealing with the disabling effects of a family member's 
        condition;
  --Respite care provided in the home, an adult day care center, or 
        over a weekend in a nursing home or assisted living facility;
  --Limited supplemental services to fill service gaps.
  --Families, not social services agencies or government programs, 
        provide most assistance to elderly persons who need help with 
        everyday tasks, such as bathing, dressing, getting out of bed 
        and toileting.
  --The demands of providing this care can be very emotionally and 
        physically draining. Studies show that half of all caregivers 
        are themselves over 65, \1/3\ are employed full time, and 
        caregivers have higher rates of depression than non caregivers 
        of the same age.
  --Families need periodic help with these responsibilities in order to 
        sustain themselves as caregivers. Studies have shown that 
        respite care both relieves caregiver stress and can also delay 
        nursing home entry for as long as a year.
Key Information
    Of the funds for the National Family Caregiver Program:
  --88 percent will be allocated by population-based formula grants to 
        State agencies on aging which will allocate the fund to local 
        area agencies on aging which collaborate with community service 
        providers.
  --10 percent of the program's funds will support innovation grants to 
        enable the development and testing of program innovations to 
        better address specialized caregiving issues, such as the 
        development of emergency caregiving back-up systems, and to 
        meet the needs of special populations, such as families in 
        specific ethnic and minority communities or families in rural 
        areas. 20 percent of these funds will be allocated to Indian 
        Tribal projects.
  --2 percent of the funds are dedicated to national activities of 
        significance including program evaluation, training, technical 
        assistance, research, and public education efforts to be 
        conducted collaboratively by the AoA and other parts of HHS.
  --This program is designed to be flexible to meet families' widely 
        varying needs for services. The level of service provided to an 
        individual family is based on an objective assessment of its 
        needs.
  --Services provided by the Family Caregiver Support Program are 
        generally not provided by other Federal programs.
  --Medicaid.--While Some States cover respite care under their 
        Medicaid home and community based waiver programs, to qualify, 
        the individual needing care must be assessed as needing nursing 
        home care and have less than $2,000 in liquid assets. In 
        addition, State waiver program ceilings often prevent even 
        those who are eligible from receiving services.
  --Medicare.--Medicare covers only limited personal care.
                          year 2000 compliance
    Question. According to GAO, only 16 percent of state Medicaid 
systems were Y2K compliant? Does that fit with your assessment?
    Answer. The GAO's report was done last summer and was based solely 
on self-reported information mailed to the GAO in response to a survey 
instrument that looked at the status of code renovation across a number 
of welfare-related programs including, but not limited to, Medicaid.
    Since that time, HCFA has brought on an independent verification 
and validation (IV&V) contractor to perform on-site visits to every 
State to evaluate their Y2K progress.
    A number of States have made significant progress since the GAO's 
report, but we remain concerned that others are still struggling to 
make their systems compliant. It is difficult for us to provide a 
percentage that are compliant because we will not have completed our 
site visits to all States until the end of April. After collecting this 
information, we believe it will take at least another month to analyze 
the results. We also plan to continue our site visits by visiting some 
of the States a second time, and, possibly, a third time between now 
and the end of the calendar year.
    While the States are responsible for these systems, we believe we 
have a responsibility to not only track their progress but provide as 
much technical assistance as possible. For that reason, our contractor 
is making recommendations for corrective additions, re-allocation of 
resources, etc., where they believe States need to give additional 
attention and consideration. Of course, it is up to the States to use 
this information to the extent they believe appropriate since they know 
their systems and resources best.
    I would like to point out that the GAO's survey only focused on one 
aspect of this problem--renovation of the code. While that is certainly 
a critical piece, HCFA's contractor is also concerned with the status 
of testing of the code once the changes have been made, the amount of 
outreach States are doing with regard to their data exchange partners 
including the provider communities, and the mission critical interfaces 
which State Medicaid systems depend upon to know who is eligible for 
the program and to make accurate and timely payments to providers. All 
of these were described in another GAO report on Y2K as being 
important, but their survey was not able to cover each of these topics 
in depth. From HCFA's perspective, however, only when these and other 
criteria are met, will we, based on our contractor's analysis, consider 
the State Medicaid programs to be fully Y2K compliant.
    Question. What does HCFA plan to do to ensure that beneficiaries 
continue to receive medical services and providers are paid if some 
states' systems fail? .
    Answer. HCFA has been encouraging State Medicaid Directors and 
Children's Health Insurance Program (CHIP) Directors to develop 
contingency plans in the event of the failure of State payment systems. 
HCFA plans to contract with a firm to review State contingency plans 
with an eye towards making suggestions to make the plans as strong as 
possible. HCFA believes that if any States are faced with systems which 
do not operate properly in January, 2000, such States would continue to 
pay providers on an estimated payment basis until the systems are 
restored to normal working conditions.
    Question. Has HCFA developed a business contingency plan for sates 
that cannot meet the Y2K deadline?
    Answer. While it is HCFA's position that States are responsible for 
developing their own business contingency plans, we realize that States 
need both policy guidance and technical assistance in developing the 
plans. HCFA has provided some general information about contingency 
planning to States, but have not yet placed any requirements on them. 
HCFA is now revising its plans on this and will be sending out 
information to States shortly which will require them to develop 
contingency plans, refer them to some additional general guidance on 
contingency planning that HCFA is using, and provide specific policy 
guidance for their use, including methods to enroll beneficiaries and 
pay providers if their regular systems fail. HCFA will also consider 
actions that HCFA or other Federal government agencies could take in 
the event of a State Medicaid system failure.
    Question. Has HCFA given states any guidance to help them develop 
contingency plans?
    Answer. Yes. HCFA has engaged the services of an independent 
verification and validation (IV&V) contractor which is visiting all 50 
States plus the District of Columbia. The contractor is not only taking 
stock of the States' readiness for Y2K, but is also making suggestions 
to them concerning contingency planning. Furthermore, HCFA has provided 
information to States about where they can find helpful hints about 
contingency planning on the Internet and in other documentation. HCFA 
is now working on more specific direction and guidance for States, and 
will require States to develop and submit contingency plans. In 
addition, HCFA plans to contract for resources to review each 
contingency plan submitted, identify weaknesses, and provide assistance 
to States in strengthening their contingency plans.
    Question. In your November 1998 Y2K quarterly report to OMB, HHS 
reported a Y2K cost of $942 million for HCFA and noted that this cost 
could increase by $350 million. That cost estimate went down in 
February 1999. Could you explain what accounts for this adjustment in 
funding requirements? Do you anticipate spending additional funds from 
the $2.25 billion in Y2K emergency funds for civilian agencies?
    Answer. The scope and complexity of the Y2K project is constantly 
evolving as we learn more about the problem. We continue to update our 
budget estimates to reflect our latest thinking surrounding this issue. 
Changes in HCFA's budget estimates since the November 1998 quarterly 
report are primarily due to two factors: (1) the use of pessimistic 
assumptions and (2) inclusion of cost estimates for implementation of 
contingency plans.
    We developed two sets of assumptions surrounding our Y2K funding 
needs: ``most likely'' and ``pessimistic.'' In November, HCFA's budget 
estimates were based on the set of assumptions ``most likely'' to 
occur, but did indicate that these costs could increase significantly 
should some of our ``pessimistic'' assumptions occur. Since the 
development of these budget estimates we have accepted the self-
certifications of almost 70 percent of external systems and all 
internal systems, so we felt that it was appropriate to remove the 
reference to our ``pessimistic'' assumptions in the latest budget 
estimates.
    The budget estimates contained in the November 1998 quarterly 
report also included HCFA's initial attempt to estimate costs 
associated with the implementation of contingency plans. At that time, 
HCFA estimated that the agency could require approximately $311.2 
million in contingency funding should problems occur necessitating 
implementation of contingency plans. The agency's recent quarterly 
report does not include costs of implementing contingency plans in its 
budget and spending estimates. HCFA will be developing the details of 
its contingency plans over the next few months and may include costs of 
implementation in future budget estimates.
    At this time, we believe HCFA's latest budget estimates will 
support the Y2K funding needs of the agency. We will continue to update 
our budget estimates as the Y2K project evolves.
    Question. Has HCFA developed a Medicare business contingency plan 
which can be implemented should system failures occur? How much does 
HCFA plan to spend in developing, implementing, and testing this plan? 
Has the plan been tested?
    Answer. HCFA is following the GAO recommended model for contingency 
planning and is now in phase three (contingency planning). HCFA is now 
developing appropriate alternatives and selecting the best strategy for 
each critical process identified in its business impact analysis, and 
writing the contingency plans. HCFA expects to complete all phases of 
its contingency planning by June 30, 1999. Testing of each plan will 
occur once the plan is completely documented and all necessary 
decisions confirmed. HCFA will make needed modifications, based on 
testing, before June 30, 1999.
    The current budget estimates include funding to support contingency 
planning for both external and internal systems. Because of the unknown 
factors surrounding the implementation of contingency plans, HCFA has 
not included the costs of implementing these plans in its budget 
estimates. HCFA will be developing the details of its contingency plans 
over the next few months and may include costs of implementation in 
future budget estimates.
    Question. Has HCFA developed and executed end-to-end tests that 
include all systems involved in processing Medicare claims? Do these 
tests involve providers of services and financial institutions?
    Answer. HCFA's end-to-end testing requirements includes testing 
that fully exercises all hardware and software being used in the 
production environment under HCFA's control to process the Medicare 
work. HCFA is requiring contractors to test data exchanges with 
Medicare servicing banks and providers. Contractors are required to 
test with providers, to confirm successful submission of claims with a 
future date.
    Question. How will HHS assure that the billions of dollars in 
Federal grant payments are not disrupted when the new fiscal year 
begins in October?
    Answer. I consider it a priority that the payment of Federal grants 
will occur without disruption in fiscal year 2000. The HHS Federal 
grants payment system, the Payment Management System (PMS), operates as 
a centralized electronic payment system and fiscal intermediary between 
the recipient and the Federal grant awarding organization. HHS expects 
to have the existing legacy PMS certified as Y2K compliant and 
implemented by June 1999. A business continuity and contingency plan 
has been developed and will be tested by June. In addition, a 
replacement and reengineered PMS will be tested and available for 
implementation before the end of fiscal year 1999.
                           nurse anesthetists
    Question. I have heard from a number of constituents over the past 
several years regarding HCFA's Proposed Conditions of Hospital 
participation in Medicare specifically on the anesthesia related issue. 
When do you expect to finalize this rule, and what, if any, are the 
delays in the issuance?
    Answer. The proposed rule was published in the Federal Register on 
December 19, 1997. The proposed rule received approximately 60,000 
comments. More than 20,000 of the comments discussed physician 
supervision of nurse anesthetists. We have not set a date of issuance 
for the final rule.
                               stem cells
    Question. Madam Secretary, as you know, this subcommittee held 
three hearings on stem cell research (12/2/98, 1/12/99, and 1/26/99). 
On January 15, the DHHS issued a legal opinion that NIH could proceed 
with stem cell research, if the stem cells were derived with private 
funds. Dr. Varmus indicated that NIH will move to establish guidelines 
and procedural protections to assure that any stem cell research would 
be done ethically. What steps are now being taken in the aftermath of 
the issuance of the legal opinion?
    Answer. NIH is in the process of convening a working group of the 
Advisory Committee to the Director (ACD) to develop guidelines that 
specify what work using these cells can and cannot be supported with 
NIH funds and to outline restrictions on the use of such funds in the 
derivation of the cells. The working group will also be asked to 
develop an oversight process for the review of research proposals which 
propose to conduct research utilizing these pluripotent stem cells. The 
working group will meet in public session and will be composed of 
scientists, clinicians, the lay public, ethicists, and lawyers; former 
members of the Human Embryo Research Panel may be asked to participate. 
NIH already has two thoughtful sets of guidelines which will inform 
these efforts--the 1994 Report of the Human Embryo Research Panel and 
the regulations regarding Research on Transplantation of Fetal Tissue 
(section 498A of the Public Health Service Act). Once developed, 
guidelines for research utilizing human pluripotent stem cells will be 
published in the Federal Register for public comment. The NIH will not 
be funding any research using pluripotent stem cells until guidelines 
are developed and widely disseminated and an oversight process is in 
place.
    Question. On February 11, 1999, seventy Members of the House wrote 
to you regarding stem cell research, and on February 12, 1999, you 
received a similar letter from seven Senators. Both of these letters 
opposed the Department's legal opinion that would allow stem cell 
research to go forward. In your opinion, if stem cell research were not 
to go forward because of this opposition, would you regard this as a 
setback for public health? How soon could stem cell research be 
initiated with NIH funding? Is the intent of the Department to move 
ahead with NIH-sponsored stem cell research? If there is a substantial 
research and public health benefit to be derived from stem cell work, 
shouldn't the Department do all it can to see to it that NIH resources 
be committed as soon as possible?
    Answer. It is essential that the Federal Government play a role in 
funding and overseeing the conduct of this research so that all 
scientists--both privately and federally funded--have the opportunity 
to pursue this important line of research. Federal funding will provide 
oversight and direction that would be lacking if this research were the 
sole province of industry and academe. We hope the guidelines and 
oversight process will be operational within the next several months.
                     medicare managed care pullouts
    Last fall, 50,000 Medicare beneficiaries lost their managed care 
options as the result of nearly 100 HMOs either cutting back on their 
service areas or terminating their government contracts.
    Question. What impact did this have on beneficiaries? Were they 
forced to change doctors or did they lose prescription drug coverage?
    Answer. No beneficiary lost Medicare coverage as result of these 
withdrawals. Beneficiaries who live in areas without managed care 
options (or those who have these options but don't choose to exercise 
them) receive their Medicare benefits through the original Medicare 
program. HCFA does not collect information on specific physicians used 
by beneficiaries in managed care plans, so it is difficult to determine 
if they were forced to change doctors. However I want to note than many 
physicians who participate with Medicare+Choice plans also participate 
in the fee-for-service Medicare plan, so some beneficiaries may not 
have had to switch doctors. With respect to drug coverage, some of the 
beneficiaries who had drug coverage may have lost such coverage because 
the fee-for-service Medicare plan does not cover outpatient 
prescription drugs. Others may have purchased a Medicare supplemental 
policy that covers drugs.
    I would also like to note that some of the 50,000 beneficiaries who 
lost their managed care option as a result of the pullouts now have a 
managed care option available. In two of the counties where there were 
no managed care options available to Medicare enrollees of terminating 
plans, new or expanding Medicare+Choice organizations now provide 
managed care choice. Those counties are Monroe County, Florida (Beacon 
Health Plans) and Muskigum County, Ohio (Health Plan of Upper Ohio 
Valley).
    Question. How do you explain this exodus of Health Maintenance 
Organizations from Medicare?
    Answer. There were several factors influencing Medicare+Choice 
(M+C) plans' decisions to withdraw from the Medicare managed care 
program. I would like to tell you about those factors, but I would also 
like to tell you about what the administration is doing to help 
beneficiaries affected by the withdrawals.
    The American Association of Health Plans asked HCFA in September to 
allow plans to revise their adjusted community rate (ACR) proposals. 
HCFA told the Association that we would not allow revisions to the 
previously approved ACRs because many beneficiaries would receive fewer 
benefits than they would have absent the revision while, at the same 
time, paying more for their health care.
    BBA changes in HMO payment rates and contracting standards have 
been blamed for the recent plan terminations and service area 
reductions. While the BBA changes may have been a contributing factor, 
the upheaval in the Medicare market comes at a time of change for the 
entire HMO industry. The majority of HMOs are suffering financial 
losses, or experiencing reduced profitability in all lines of business 
and organizations are re-evaluating business decisions made in earlier 
times when different circumstances prevailed. As an example of market 
changes on the order of those in Medicare managed care, 20 percent of 
participating HMOs dropped out of the FEHBP program at the end of 1998 
(although not many FEHBP enrollees were affected by the pull-outs).
    The recent upheaval in the Medicare market is not unprecedented. It 
is reminiscent of similar upheaval in the Medicare risk program in the 
late 1980s, when what was then an essentially new program turned out to 
be an unattractive market for many HMOs.
    With respect to those areas not currently served by a Medicare 
managed care plan, the President recently announced a new policy to 
expedite the approval of health plans applying to enter markets without 
Medicare managed care plans. HCFA is working hard to speed up its 
review and approval of plans seeking to enter markets without Medicare 
managed care options. HCFA is giving these applications first priority 
for review and will expedite their entrance into the market as long as 
they meet the solvency, quality, and other standards necessary to 
protect beneficiaries.
    HCFA has also reduced administrative burdens for M+C plans. For 
instance, on February 17, HCFA issued a portion of the M+C final rule 
which reduces several administrative burdens dealing with provider 
participation, health assessments, termination notices, coordination 
requirements, and other areas. Additionally, HCFA will issue a 
comprehensive final rule this fall that will give further consideration 
to reducing these burdens. The final version of the Quality Improvement 
System for Managed Care (QISMC) substantially reduced the number of its 
requirements, particularly reducing the number of quality improvement 
projects from 13 to 2 per year. HCFA has also extended the time period 
for implementation of these projects, and are working with M+C 
organizations to implement the compliance requirements for the new 
regulatory and QISMC provisions over an extended time period.
    Finally, the President's budget package proposed that the deadline 
for adjusted community rate proposals be extended from May 1 to July 1. 
This will enable M+C organizations to develop more informed estimates 
of their costs than they were able to produce last year.
    Question. Your budget proposes increasing fees assessed managed 
care plans with Medicare plus Choice contracts from the current level 
of $95 million to $150 million. Isn't this likely to further deter 
health plans from operating Medicare managed care programs?
    Answer. As I stated earlier, we know that M+C organizations are 
unenthusiastic about user fees, but we have seen no evidence that the 
fees have either caused plans to leave the Medicare program or 
dissuaded potential applicants from joining the program. Note that in 
1998, the $95 million user fee amounted to about half of a percent of 
the premium HCFA pays to Medicare+Choice organizations. In 1999, due to 
an increase in overall program expenditures, $95 million amounts to 
about a third of a percent. Should the 2000 appropriation reach $150 
million, it will return to the 1998 impact--more than a third, but 
probably still less than half of a percent of the premium. Therefore, 
after accounting for increased Medicare payments to M+C organizations, 
the impact of a $150 million user fee in 2000 will be about the same as 
the $95 million user fee was in 1998.
    We have concluded that, because the impact is relatively the same 
in 1998 and 2000, organizations' behavior concerning participation will 
be relatively the same--new applicants will not withdraw their 
applications because of a increased user fee, and existing plans will 
not leave the program because of an increase.
                                 ______
                                 
               Questions Submitted by Senator Ted Stevens
    health care financing administration (hcfa) year 2000 computer 
                               compliance
    As the nation's largest health insurer, Medicare expects to process 
over a billion claims and pay $288 billion in benefits annually by the 
year 2000. The consequences of its systems not being Y2K compliant 
could be enormous. In September 1998, GAO issued a report that 
concluded that HCFA and its contractors were severely behind schedule 
in addressing the Year 2000 issue for its Medicare claims processing 
systems. According to GAO, HCFA has spent $606 million to address the 
Y2K problem and plans to spend an additional $330 million for Y2K 
contingencies.
    Question. With close to $1 billion budgeted and grave concerns that 
its systems will not be compliant by January 1, 2000, how does HCFA 
plan to ensure that all Medicare claims are processed and that all 
eligible participants receive their benefits?
    Answer. Just to clarify, HCFA's current Y2K budget and spending 
estimates are approximately $606 million. This estimate includes the 
estimated $168.4 million obligated in fiscal years 1996 through 1998 to 
support Y2K activities. This estimate also includes the agency's fiscal 
year 1999 budget estimate of $287.6 million and its fiscal year 2000 
budget request for $150 million to support Y2K efforts.
    HCFA is confident that the Medicare claims that reach our systems 
will be processed correctly and that records of payments will be sent 
to providers and the banking system. Remediating provider systems so 
that they can produce and send claims, and ensuring that the providers 
bank can receive and process payment is beyond HCFA's responsibility 
and resources.
    However, we are engaged in a very proactive outreach effort to make 
providers aware of what they need to do, and to provide information and 
tools to assist efforts to renovate and test. Further, we have alerted 
providers that they must be able to submit electronic claims in a Y2K 
compliant format in order to be paid for the services they render. We 
have notified providers, physicians and suppliers that they must begin 
submitting electronic claims in the Y2K compliant format as of April 5, 
1999. Failure to submit claims in this format will result in the return 
of the claim to the provider without processing it for payment. We view 
this as a powerful incentive for providers to work toward compliance.
    Question. Has HCFA developed a program to assure that Managed Care 
Organizations will be Y2K compliant and have business continuity and 
contingency plans in place this year?
    Answer. HCFA has taken a number of actions to ensure that its 
Medicare managed care organizations (MCOs) are Y2K ready. HCFA included 
in its 1999 contracts with Medicare+Choice plans and other risk plans a 
provision that requires the plans to become Y2K ready. The agency has 
also provided its compliance definition and testing guidelines to MCOs 
and has notified MCOs that they are required to certify their Y2K 
readiness as of March 31, 1999. We are also planning to conduct a 
series of conferences for MCOs to discuss HCFA's Y2K readiness 
requirements in March and April of 1999.
    The agency will be acquiring the services of an independent 
verification and validation (IV&V) contractor to assess the risk 
associated with MCO certifications and conduct on-site review of MCOs 
judged to be at high risk. MCOs whose on-site reviews reveal 
deficiencies will be required to submit corrective action plans. 
Corrective action plans will be reviewed by the IV&V contractor and, 
possibly, be re-visited for verification and validation.
    We believe it is also important for MCOs to recognize the risks 
associated with the Y2K problem and develop contingency plans. HCFA has 
notified MCOs to begin Y2K contingency planning, submit their 
contingency plans to HCFA for review, and submit monthly progress 
reports on their contingency planning efforts.
    Question. On February 3,1999, $93.4 million in emergency 
appropriations were released to HCFA. Do you expect that you will be 
requesting additional funds from the emergency fund?
    Answer. At this time, we believe our latest budget estimates will 
support the Y2K funding needs of the agency. We plan to continue to 
update our budget estimates as the Y2K project evolves. Should we 
encounter additional funding needs, such as funding to support the 
implementation of contingency plans, we will go through the 
establishment process and work with the Congress to obtain the required 
funding.
                 medical devices, procedures and drugs
    Within your Department the Food and Drug Administration has the 
responsibility to determine the safety and efficacy of new medical 
treatments, devices and drugs. The FDA's process for approval is 
rigorous and well-defined. It is considered the ``gold standard'' for 
the world. Once the FDA has determined that a medical treatment, 
diagnostic procedure, device or drug is safe and effective for labeled 
indications, that approval generally acts as a ``green light'' for the 
private insurance market to begin paying for that service or 
medication.
    Question. What is being done to assure that Medicare beneficiaries 
have equal and timely access to the latest technology?
    Answer. A revamped process for making Medicare's national coverage 
decisions has been and remains among my highest priorities. Our new 
process will be responsive, open, and participatory--ensuring that we 
have the views of not just the best medical and scientific resources in 
the Nation, but also that we hear from a wide range of concerned 
parties, including consumers and the industry. This process will be 
published in the Federal Register this summer. We review an issue as 
soon as there is sufficient evidence of its medical effectiveness, even 
if only for a limited use. In order that we and the medical and 
research communities remain in contact, we have always been willing to 
meet with researchers prior to design of clinical trials or other 
research to ensure that they understand the amount and type of 
information we usually require in order to make a national coverage 
decision. This helps us move quickly and effectively to review new 
procedures and technologies.
    In fact, several of our most recent national decisions dealing with 
some of the most contemporary developments in technologies and 
procedures (transmyocardial revascularization, cryosurgery of the 
prostate, cardiac monitoring by bioimpedence) have involved services 
about which we offered suggestions as to the amount and kind of 
information that could lead to a positive coverage decision. In such 
cases, the parties' willingness to work with us, consider the advice, 
and produce information timely enables us to make decisions in a very 
short time. Further, we are working right now with the Food and Drug 
Administration to examine ways in which both agencies can work together 
to share information with interested parties to increase their 
awareness of our roles and requirements, and to help facilitate the 
review process.
    Question. Specifically, does Medicare have an expedited coverage 
determination process for breakthroughs with respect to medical 
devices, procedures and drugs?
    Answer. We do not have a separate, fast-track process. I am 
confident that our revamped process for making national Medicare 
coverage decisions will be able to respond in a timely manner when such 
issues arise. Our work in assembling the best clinical, scientific and 
other experts, as well as qualified representatives of consumers and 
the industry, as the backbone of our new Medicare Coverage Advisory 
Committee, will enable us to respond to these issues with the baseline 
of solid, evidence-based policy and decision making as our number one 
consideration. Our work with the Food and Drug Administration to move 
toward better public understanding of our respective roles and 
requirements and to facilitate our processes with mutual efficiency 
will also contribute to our ability to be aware of and prepared for 
fast-moving issues and to respond effectively. We are considering how 
we might develop a process, for example, that would channel parties to 
HCFA at an earlier point in their work with FDA, so that we can apprise 
them of the informational requirements for Medicare coverage and other 
issues.
                       rural health and user fees
    The budget proposes to collect $55 million in user fees from 
doctors and other providers of Medicare services by imposing a $1 
penalty on any reimbursement claim which is not submitted 
electronically.
    Question. Wouldn't this primarily target doctors in rural 
communities who may not have the resources to purchase the necessary 
computer equipment?
    Answer. No. Providers, regardless of location, who currently do not 
have computer equipment, or do not have the resources to purchase 
computer equipment, can request a waiver of this fee. The 
Administration's legislative proposal gives providers the option to 
request a waiver based on their not having, or not being able to 
afford, the necessary computer equipment.
    Question. What would a hard-pressed rural doctor have to do to 
obtain an exception from this user fee?
    Answer. Providers would need to request a waiver from the fee 
indicating the reason, e.g. they do not possess, or cannot afford, the 
required computer equipment, or they do not submit a sufficient number 
of Medicare claims to warrant purchasing the necessary computer 
equipment.
                                 ______
                                 
                 Questions Submitted by Senator Jon Kyl
                          section 1115 waiver
    I understand through John Kelly, Director of the Arizona Health 
Care Cost Containment System (AHCCCS), that the Department of Health 
and Human Services has recently approved a year extension of the 
state's Section 1115 waiver to operate our Medicaid program. As you 
know, this extension enables the state to operate under the existing 
terms and conditions of the 1115 waiver. Arizona has operated under 
1115 waiver authority since the inception of the AHCCCS program in 
1982. During this time, AHCCCS has been a national leader in delivering 
quality care in an efficient manner. In fact, in a recent study, AHCCCS 
was rated as one of the three most efficient Medicaid programs in the 
nation. (Citizens for a Sound Economy study, 1997.) While the one year 
extension is certainly appreciated, the AHCCCS program is unclear 
whether all the provisions of the Balanced Budget Act of 1997 will be 
applied to the state program in two to three years, or whether the 
waiver authority will exempt AHCCCS from some of these provisions. 
Arizona is concerned that all of the provisions in the BBA will apply 
when they seek a renewal of their waiver in one year.
    Question. Madame Secretary, how does the BBA affect existing 1115 
waivers and the renewal process?
    Answer. The BBA contains a limited exemption from new managed care 
requirements for waiver programs under section 1115 and 1915(b). 
Specifically, section 4710(c) provides that none of the provisions 
contained in sections 4701 through 4710 of the BBA will affect the 
terms and conditions of any approved waiver under section 1915(b) or 
1115 of the Act, as the waiver stood on the date of the BBA enactment--
August 5, 1997. We believe that this provision was intended to give 
States some flexibility in how the BBA would impact their approved 
waiver programs and provide time for States to come into compliance 
with new requirements. The provision exempts section 1115 and 1915(b) 
waivers only from those BBA provisions regarding Medicaid Managed Care 
contained in Chapter 1 of Subtitle H of the BBA. It specifically did 
not apply to other chapters or provisions contained elsewhere in the 
Act.
    The extent to which a State's approved 1115 waiver program will not 
be required to come into compliance with these new requirements will be 
determined by several factors. In general, any provision of a waiver 
program that is specifically addressed in the State's waiver proposal, 
statutory waivers, special terms and conditions, operational protocol, 
or other official State policy or procedures approved by HCFA as of 
August 5, 1997, would not be affected by the BBA provisions (even if it 
differs from the BBA managed care requirements) as long as the waiver 
in effect at that time is in place.
    Further, section 4757 of the BBA amended section 1115(e)(2) of the 
Act to permit a specific 3-year extension of 1115 waiver authority for 
certain statewide, comprehensive health care reform programs, under 
``the same terms and conditions . . . that applied to the project 
before its extension under this subsection.'' 1115 demonstrations that 
qualified under this provision would therefore maintain their 
exemptions from the BBA provisions in the 3-year period granted for an 
extension under this authority. However, several States (including 
Arizona) do not meet the requirements for a 3-year extension under this 
authority. These either do not meet the time limits for submission of 
an extension request that were in the BBA or are not statewide 
demonstrations. The BBA managed care provisions would apply to these 
programs as of the date their current section 1115 authority expired. 
However, the BBA does not preclude waivers of specific requirements nor 
preclude permitting Federal financial participation for costs not 
otherwise matchable in these instances. These determinations would have 
to be made on a State by State and provision by provision basis.
    Arizona's experience in their recent 1-year extension is an example 
of how this process will work. The State wanted to maintain its 
enrollment/disenrollment process, which differs from that in the BBA. 
Arizona requested continuation of its waiver of section 
1903(m)(2)(A)(vi), which contains the enrollment/disenrollment 
requirements, and after consideration, this waiver was granted.
    Question. Is it your intention that in three years all Section 1115 
waiver states must comply with all provisions in the BBA, or must 
renegotiate their 1115 waivers?
    Answer. With respect to States that are granted 3-year extensions 
under section 4757 of the BBA, we are not yet clear on how the 
continuation of these demonstrations and exemptions from BBA 
requirements are to be addressed when the 3-year extensions expire.
    Question. If states must renegotiate their waivers, will HCFA be 
willing to waive some provisions of the BBA to allow states to continue 
operating their programs?
    Answer. The Secretary may consider waivers if the Secretary 
determines the program meets or exceeds the beneficiary protection 
standards of the BBA. As with Arizona's recent experience, a 
determination will have to be made on a provision-by-provision basis, 
balancing the beneficiary protections and other provisions in the BBA 
against the state's policies and procedures in its demonstration and 
the need for flexibility in administering the program.
                                 ______
                                 
               Questions Submitted by Senator Tom Harkin
                                tobacco
    The President announced in his State of the Union address that the 
Federal government will proceed with a suit against the tobacco 
industry for tobacco-related costs in Federal health programs, 
including the Medicare program.
    Question. To what extent is HHS working with the Department of 
Justice in preparing the suit, and what is the Administration's time 
frame for moving forward?
    Answer. The Department of Justice is forming a task force to 
prepare to litigate to recover these costs. The task force will file 
the lawsuit when the preparatory work has been completed; they will be 
working to bring appropriate suits as soon as possible. We have met 
with the Department of Justice on this, and supplied legal and factual 
material. We plan to assist Justice as needed over the course of the 
work of the DOJ Task Force.
    As you know, the Governors are in town this week and one item at 
the top of their agenda is the fate of the $195 billion settlement the 
states reached last year with the tobacco industry. I believe that 
because the state suits were based on Medicaid recovery, the Federal 
government has the right to collect its share of those Medicaid costs. 
Therefore, I was pleased to see that the President's budget assumes a 
Federal share of 57 percent (the average Medicaid matching rate) of 
those funds.
    Question. However, recovering the Federal share is not going to be 
easy here in the Congress. It is critical that the Administration take 
a tough line. Do you intend to take a tough line, and if an agreement 
is not reached with the states, will HCFA withhold the Medicaid 
dollars?
    Answer. Thank you for supporting our collection efforts. As you 
know, current Medicaid law requires HCFA to recoup the Federal share 
(on average 57 percent) of all State third-party liability collections, 
including the recent State tobacco settlements. Since US taxpayers paid 
a substantial portion of the Medicaid costs that were the basis for the 
State settlements, the Budget assumes that the Federal government will 
follow the law and claim its share of the proceeds.
    The Administration supports legislation that would enable States to 
retain these funds in exchange for making a commitment that the Federal 
share of the settlement's proceeds will be spent on shared national and 
State priorities: to reduce youth smoking, protect tobacco farmers, 
improve public health, and assist children.
    It is for this reason that the Administration has delayed action on 
claiming the Federal share of the State tobacco settlements until 
fiscal year 2001 so that we can work with the States and Congress over 
the next year on mutually agreeable legislation.
                                 ______
                                 
                Questions Submitted by Senator Herb Kohl
    As you may recall, at last year's hearing I spoke with you about my 
legislation to require criminal background checks for long-term care 
workers. Since then, I have been pleased to work with you on this 
initiative, and am glad to see that background checks for nursing home 
workers were included in the budget. However, I feel strongly that it 
is equally important to require checks for all long-term care workers. 
After all, it does little good to stop a criminal from working in a 
nursing home if they can then go on to work in a home health care 
agency.
    Question. Why did the Administration stop short of requiring checks 
for all long-term care workers? Would you support an expansion of the 
background check to other long-term care settings?
    Answer. HCFA's statutory authority limits the types of settings it 
may regulate. It does not have authority to regulate some settings that 
are considered long-term care, e.g., adult residential care, assisted 
living and similar settings. We understand there has been marked growth 
in the number of these long-term care settings, including home health 
agencies, over the last several years. As such, we will evaluate 
expanding background checks to other long-term care facilities that 
participate in Medicare and Medicaid.
    We believe that the Nation's elderly need reasonable safe-guards 
when they are living in settings that provide personal, supportive and 
medical care. While we wish to ensure that no care giver with a 
criminal past be a care giver to a person who may be cognitively and 
physically dependent, we believe it may be more constructive if we 
first take several intermediate steps before the introduction of 
legislation requiring background checks of all workers:
    Evaluate the effectiveness of the fiscal year 1999 appropriation 
provisions to establish within the Department of Justice a voluntary 
process that would permit nursing home operators to query the FBI 
database for criminal background checks.
    Develop a national criminal abuse registry, as proposed in the 
President's Budget and assess how it may be expanded beyond nursing 
home employees.
    Determine the number of individuals impacted by legislation 
requiring people working in long-term care to have a criminal 
background check. This includes agreeing on the settings that would be 
part of the definition of long-term care.
    Question. As I'm sure you are aware, nursing home operators are 
concerned about the costs of these background checks. Do you believe 
that the benefits of conducting checks outweigh the costs? What steps 
do you think can be taken to minimize those costs? Would the 
Administration be willing to consider proposals to divide the costs 
between the nursing facilities and the government?
    Answer. HCFA believes that these background checks are an important 
part of our goal to better protect the Nation's elderly. In addition, 
the background checks should reduce the nursing homes' vulnerability to 
costs from litigation. We also believe that this initiative is cost-
effective and should be included as a price of doing business for 
nursing home operators. User fees are a method of encouraging providers 
to internalize the costs of activities that are crucial to the proper 
functioning of the program. In some cases, such as criminal background 
checks, the cost of the activity also benefits the provider's private 
sector business. Because we recognize the costs involved, we have 
proposed in legislation to limit the amount of the fees to the lesser 
of the actual cost of the background check, or $50.
    Private sector companies engage in many forms of risk mitigation, 
such as checking the credentials of professional staff and bonding 
those with financial responsibilities. The Government has never entered 
into an arrangement of sharing costs for such activities, and we 
believe that this proposed requirement should not be an exception.
    As you know, last July, the Aging Committee held a hearing about 
serious problems of malnutrition and neglect in some California nursing 
homes. As a result, the Administration has significantly stepped up 
their oversight of nursing homes, and your fiscal year 2000 budget 
calls for $203 million for inspection activities. However, some of that 
increase is paid for with user fees.
    Question. In the event that Congress again rejects such user fees 
this year, does the Administration still intend to pursue this 
increase? How will it be paid for?
    Answer. Unlike last year, HCFA's budget request this year is not 
reduced by the amount of the proposed user fees. The Administration is 
proposing that for any user fees that are enacted, HCFA's requested 
program management funding level would be reduced by the amount 
estimated to be received from such enacted user fees. Therefore, HCFA's 
request assumes funding sufficient to effectively administer its 
program whether the users fees are enacted or not.
    The fiscal year 2000 budget includes $1.2 billion for the Child 
Care & Development Block Grant. However, there is growing evidence that 
there is a real shortage of child care for infants and toddlers ages 0-
3, and that care for these younger children in considerably more 
expensive.
    Question. What plans does the Administration have to meet this 
need? Do you agree that we should expand the infant and toddler set-
aside in the Block Grant as part of this effort?
    Answer. We have asked for an additional $1.155 billion in fiscal 
year 2000 to expand the availability of subsidies to working families. 
States would have the flexibility afforded them under the CCDBG Act to 
direct the use of these funds, for example, using them to pay higher 
rates to infant and toddler providers.
    In each of the last 3 years Congress has earmarked $50 million 
specifically for activities to increase the supply of quality care for 
infants and toddlers. States have been especially appreciative of this 
targeted funding as it has allowed them to address the critical need 
they face for this care. We favor any initiative that increases the 
availability of quality child care for infants and toddlers.
    In the fiscal year 2000 budget, we have requested the $50 million 
earmark for quality care for infants and toddlers. This reflects our 
continued commitment to quality care for infants and toddlers and to 
giving States the flexibility to meet their individual supply 
shortages.
    Additionally, the Administration has proposed an Early Learning 
Fund (ELF) of $600 million in fiscal year 2000 for the specific purpose 
of purposes of improving the quality of child care for children under 
age 5 and of promoting the healthy development during a child earliest 
years.
    I am very concerned that the Long-term Care Ombudsman program 
continues to be severely underfunded. The Ombudsman is often the first 
person a family contacts for help when someone is abused or neglected 
in a long-term care facility. They work as advocates for these families 
to make sure that abusive and neglectful situations are corrected. 
Although we managed to provide a $3 million increase for the Ombudsman 
for fiscal year 1999, that is still insufficient to meet these needs.
    Question. Why has the Administration decided to level fund this 
vital program again this year?
    Answer. We agree that the patients in long-term care facilities 
should be assured that the services they receive are of the highest 
quality. Poor performing homes need to know that corrections must 
occur. The Ombudsman program is part of a major Department initiative 
to strengthen performance in nursing homes. HCFA will expand State 
inspection and enforcement efforts, establish a national patient abuse 
registry, and improve Federal oversight of State surveyor activity. We 
will also be seeking legislation to require nursing homes to conduct 
criminal background checks of employees. The Department will also be 
establishing a ``Nursing Home Compare'' website that residents and 
their families can use to compare the quality and safety record of 
nursing homes in their area.
    In fiscal year 2000, we intend to sustain the increased funding 
level of $12.2 million provided by Congress this past year for the 
Ombudsman program. The tight discretionary spending caps have forced us 
to make very limited program expansions. For the Administration on 
Aging, we are proposing a new National Family Caregiver Support Program 
and seeking expansion of the home-delivered nutrition services. One of 
the objectives of the new Caregiver Program is to maintain frail older 
persons in their homes for longer periods.
                                 ______
                                 
            Questions Submitted by Senator Dianne Feinstein
                 federal medical assistance percentage
    The Federal medical assistance percentage rate for California, as 
for other states, is based on a per capita income using a Census Bureau 
estimate of the state's population. However, Governor Davis believes 
the Census Bureau's numbers undercount the state's population, which 
results in an overestimation of California's per capita income and a 
subsequent lowering of California's FMAP rate. According to the 
Governor, the state Department of Finance keeps more accurate records 
relying in part on driver's license change of address data, which is 
current through November 1998. The Census Bureau relies solely on tax 
returns, which are current only through the first quarter of 1997. For 
example, of the three major drivers of population change--births, 
deaths, and migration, the primary area of discrepancy is migration. 
For a period of 1990 through 1998, the Census Bureau estimates a net 
out-migration of more than 13,000 while California's data indicates a 
net in-migration of more than 755,000.
    Question. I think that we can all agree that the more accurate data 
is the best. What steps can the BHS take to use more accurate data, 
such as that generated by the Department of Finance, in determining the 
FMAP for California's Medicaid program?
    Answer. No one can disagree with the statement about accurate data. 
We all prefer accurate data. The law requires, however, that HHS use 
the per capita state incomes as generated by the Department of 
Commerce. Commerce (Census) has decided (and the decision has been 
upheld by the Supreme Court) that it will not use numbers adjusted for 
the Census undercount for calculating per capita incomes or for any 
other use involving the distribution of Federal funds.
Discussion
    The major contribution of the data generated by the Department of 
Finance is that they use the estimates of the undercount in the 1990 
Census to decrease the average incomes of each State and they feel they 
have more accurate data on immigration than Census provides. Since the 
undercount tends to include a concentration of minority populations, 
those states with large concentrations of minorities should do better 
if adjustments are made. Of course, better information on immigrants 
will also benefit those States with large immigrant populations.
    A 1992 Census decision, published on January 4, 1993 and later 
upheld by the Supreme Court, however, says that for distributions of 
Federal funds, the Census population numbers unadjusted for undercount 
must be used. The decision was reached after considerable research, 
public comment, and discussion. In spite of a large majority of public 
comments in favor of using adjusted data for disbursement, Census (and 
the court) decided not to use adjusted numbers for disbursing Federal 
funds. The deciding arguments seemed to be that:
    The estimated undercount was small (on the order of 1.6 percent 
nationwide) and to make the adjustment for States might improve the 
accuracy, but for small areas the adjustment would probably not improve 
the accuracy of the resulting population numbers and the resulting 
distributions of funds. Because they felt that consistency was 
important, they did not adjust State numbers either. To do otherwise 
would be to violate that decision. Similarly, to use State data on 
immigration would violate the decision and would violate current law.
    HHS has very little discretion about how it calculates the FMAP. 
Section 1905 (b) of the Social Security Act requires that HHS use the 
average incomes as calculated by the Department of Commerce and that 
those average incomes be used in a very specific way to calculate the 
FMAP. To change the FMAP calculation would require Congressional as 
well as executive action to amend the Social Security Act. In addition, 
(depending on the change) changing the FMAP might require overturning 
the 1993 Census decision referred to above.
    Still, HHS is always willing to discuss any effort to improve the 
payment methodology for Medicaid expenditures and to cooperate with 
Congress to enact a better methodology into law.
    Two parent work requirements under welfare reform.--In December, 
HHS announced that California failed to meet its two parent work 
requirement under welfare reform for two parent families. Only 24.5 
percent of two parent families in California met the work requirement, 
as opposed to the 68 percent required by law. Sixteen other states and 
the District of Columbia also failed to meet the requirement. HHS has 
penalized California $7 million this year for failure to meet the 
requirement. The state is preparing a request that the penalty be 
waived, primarily because California had not fully implemented welfare 
reform in fiscal year 1997.
    Question. How is HHS disposed to view requests for penalty waivers 
from California and the other states that failed to meet the two parent 
work requirement under welfare reform?
    Answer. HHS is currently reviewing requests for reasonable cause 
exceptions from the work participation penalty from California and 
other States that failed to meet the minimum two-parent participation 
rate. We are considering all such requests carefully. As the statute 
provides, we will not impose a penalty against a State if we determine 
that it had reasonable cause for failing the two-parent rate. If we 
find that a State did not have reasonable cause, we will work with that 
State to develop a corrective compliance plan to rectify the problem. 
We do not impose penalties against States that achieve compliance under 
an approved corrective compliance plan. For any State that remains 
subject to a penalty, we will be reducing the amount of its penalty 
liability based on the degree of non-compliance, as required by the 
statute.
    Question. Will most states be able to get the penalties waived if 
they develop plans to employ more two parent welfare families?
    Answer. The law permits a State to submit a corrective compliance 
plan that outlines how the State will correct the violation and how it 
will insure continuing compliance with the requirements. If we accept a 
State's plan and it fully corrects the violation within the time period 
specified in the plan, then we do not impose a penalty on the State.
    A plan to employ more two-parent families would be a natural 
element of correcting a violation of the two-parent participation 
requirement. However, we expect States to submit corrective compliance 
plans that fully address their compliance issues, including 
identification of measurable outcomes to be achieved within a specified 
period of time.
    Question. Do you feel that the failure of 17 states to meet the two 
parent work requirements says about the appropriateness of the 
requirement?
    Answer. The fiscal year 1997 participation rates reflect the very 
earliest period of implementation of the new welfare program. They are 
based on no more than one quarter's performance for any State. It would 
be premature to judge the appropriateness of the participation goals 
based on these limited and early data. Moreover, efforts in working 
with two-parent families vary greatly from State to State.
    The Administration continues to encourage States to make the 
investments necessary to work with all families on their caseload, 
especially two-parent cases, and to use all available Federal and 
States resources.
    Question. In other words, are we asking states to meet unattainable 
goals?
    Answer. Given that nearly half of the States subject to the 
requirement for fiscal year 1997 met the two-parent participation rate, 
we cannot say that the goals are unattainable. While they are clearly 
very demanding, caseload reduction credits play a significant role in 
reducing the target two-parent rates to more attainable levels.
    Adequacy of federal child care funding for families on welfare.--
Under current Child Care and Development Block Grant (CCDBG) levels, 
California receives $333 million annually, enough to fund 79,000 child 
care slots each month. The State puts over $1 billion annually of its 
own money into child care for children on welfare. But there are 1.13 
million children on welfare in California. Existing funding is not 
sufficient to place all of these children in child care so that their 
parents can leave welfare for work.
    Question. By HHS' own estimate, child care funding in the Child 
Care and Development Block Grant serves only 10 percent of eligible 
children. In California, there are 1.13 million children on welfare, 
but only about 79,000 per month receive child care subsidies from the 
CCDBG. How can the Administration realistically expect states to move 
people from welfare to work when no affordable child care is available 
for their children?
    Answer. This question points to a very real need--not only for 
additional subsidy funds--but for funds for capacity building to ensure 
that families moving from welfare to work have access to safe and 
affordable child care. We know also that many States make difficult 
choices in designing child care programs and have to juggle priorities. 
Due to scarcity of funding, many States put TANF children in the top 
priority of children to be served under the CCDBG. It is even more 
difficult for States to address the needs of working poor families.
    For TANF families, States can use TANF funds for child care 
subsidies in addition to CCDBG funds. While we do not have figures on 
the numbers of children receiving child care through the TANF program, 
California has reported significant direct TANF expenditures on child 
care in fiscal year 1998--over $71.5 million. California also 
transferred $100 million in TANF funds to the CCDBG in fiscal year 
1998. And although our data is not complete yet, we agree that numbers 
point to the need for additional CCDBG subsidy funds and resources to 
build capacity in the future.
    By our latest estimates in fiscal year 1997, some 1.25 million 
children in the U.S. were served by subsidies from the funds governed 
by the Child Care and Development Block Grant. Under President 
Clinton's initiative, by fiscal year 2004, we hope to serve some 2.4 
million children under the CCDBG Act. This is still far short of the 
approximately 10 million children we estimate to be income eligible for 
the CCDBG.
    Question. Can you describe in more detail the President's proposal 
for a new Early Learning Fund?
    Answer. The proposed ELF will assist States and localities in 
promoting quality child care, early childhood development, and early 
learning for children under the age of five.
    Services will be delivered at the community level based on a 
community needs assessment. States would provide challenge grants 
through a competitive grant process to their communities. Each 
community would develop approaches to enhance the quality of child care 
for young children using selected benchmarks, national accrediting 
organization standards, and locally tailored goals. Not less than 70 
percent of the funds would be used to serve low-income communities.
    In keeping with this principle of community involvement, the 
following kinds of activities, which research show are important for 
quality, could be undertaken with these funds:
    Parenting Education.--using Even Start, community based resource 
centers, home visiting programs, family literacy centers, preschools/
schools, etc.
    Information and Referral.--initiatives to develop/increase consumer 
education information/referral services that assist parents locate and 
assess the quality of child care services.
    Family Child Care Networks.--reating/sustaining family child care 
networks that connect home-based providers to quality child development 
education and support.
    Provider Training.--training child care providers on basic child 
development training, first aid, CPR, etc, as determined by local needs 
assessment.
    Improving Staffing Ratios.--increase staff/child ratios, reduce 
group size.
    Licensing/Accreditation Assistance.--helping child care providers 
meet State/local licensing and accreditation standards.
    Standards Enforcement.--increasing the numbers of qualified 
licensing and standards enforcement staff and activities to improve 
monitoring and enforcement of State and local health and safety 
standards.
    Health Services.--linking child care providers to health 
professionals and linking children to health care services, including 
mental health services.
    Care for Special Needs Children.--supporting the inclusion of young 
children with special needs, increasing the quality of their care.
    Salary/Benefit Enhancements.--assisting programs to increase their 
quality and continuity of care by retaining highly qualified staff.
    Performance measures of the goals to be achieved through ELF 
activities will be established in consultation with localities. In 
summary, the ELF will provide States and communities with the resources 
to build on existing approaches--or locally identified needs--that will 
support school readiness in child care.
    Question. How similar is this proposal to the grants to Local 
collaboratives program outlined in S. 17, the Child Care ACCESS Act, a 
bill that I am co-sponsoring?
    Answer. We are very pleased that you and your Democratic colleagues 
introduced S.17 which provides meaningful assistance to help low-and 
middle-income families find and afford quality child care. The 
activities under S. 17 and our proposed Early Learning Fund are very 
similar in their purpose of involving communities in improving the 
quality of child care and early childhood development for our youngest 
children. For example, S. 17 provides for ``activities designed to 
strengthen the quality of child care for young children and expand the 
supply of high quality child care services for young children''. Our 
proposal specifically mentions ``provider training, improving staffing 
ratios, licensing and accreditation assistance, standards enforcement, 
and salary and benefit enhancement''--all of which could also be seen 
as allowable activities under S.17. Furthermore, both proposals place 
an emphasis on serving low-income areas.
    There are some differences between the two proposals in how 
assistance is delivered between the State and communities, as well as 
in the cost-share structure between the Federal and State partners. 
Despite these differences, both proposals would make essential 
investments seek to enhance the quality of services for young children.
                          health research cuts
    The fiscal year 2000 budget proposes only a 2.1 percent increase 
for NIH. Congress increased NIH by 15 percent last year. The Cancer 
March (September) Research Task Force has recommended that the National 
Cancer Institute's budget be increased to $10 billion over the next 5 
years (The fiscal year 2000 proposal is $2.7 billion, up $65 million or 
2 percent).
    Question. Doesn't an up-and-down budget, a yo-yo budget, discourage 
scientists from pursuing research, young scientists from being 
researchers?
    Answer. While avoiding the up and down on the NIH budget would be 
desirable, the President had enormous restraints on his overall budget. 
Still, the President's request of $15.9 billion for NIH represents a 17 
percent increase over two years for medical research and keeps NIH on 
path for a nearly 50 percent increase over five years. With the fiscal 
year 2000 funds, NIH plans to support a record total of nearly 30,000 
research project grants. This includes over 7,600 new and competing 
awards, which while less than in fiscal year 1999, still represents the 
second highest annual total in history. The President has also 
committed to increasing resources for NIH medical research by nearly 50 
percent over the next five years. The levels of resources available in 
both fiscal year 1999 and fiscal year 2000 should provide ample 
opportunities for bright, young scientists to begin to make their mark 
in the medical research arena. In fact, Dr. Harold Varmus, the Director 
of NIH, has indicated that within the 2.1 percent increase proposed for 
NIH for fiscal year 2000, NIH is committed to ensuring that the number 
of new investigators does not erode. We would welcome young scientists 
joining with NIH to help spend some of our requested $15.9 billion in 
advancing our knowledge of what causes diseases, such as cancer, AIDS, 
and diabetes; and discovering how to diagnose them earlier and more 
accurately, treat them successfully, and ultimately, prevent their 
occurrence in the first place.
    Question. Commendably, you are proposing that Medicare cover 
routine patient costs of participating in cancer clinical trials. Now, 
only 2 percent of cancer patients participate. Won't this funding level 
mean a loss of resources for training and conducting those trials?
    Answer. Within the $15.9 billion requested for fiscal year 2000, 
NIH expects to spend nearly $512 million in direct research training 
programs, about $1 million more than in fiscal year 1999. This will 
support a cohort of 15,693 research trainees. NIH continues to regard 
clinical trial research as a priority. NIH expects to provide nearly 
$1.6 billion across all the Institutes and Centers for the support of 
clinical trials in fiscal year 2000. This is an increase of over $49 
million, representing a 3.2 percent increase over fiscal year 1999, 
compared to the total NIH increase of 2.1 percent. Clinical trials by 
just the National Cancer Institute are expected to grow by 2.4 percent 
in fiscal year 2000, to a funding level of $474 million. In addition to 
NIH resources, the fiscal year 2000 President's budget for the Health 
Care Financing Administration proposes to begin in fiscal year 2001 a 
three-year, $750 million demonstration project to cover the costs of 
patient care for Medicare beneficiaries who choose to participate in 
selected cancer clinical trials.
    Cancer Research Coordination.--Some cancer researchers say that 
within NIH and in fact within the Federal government there is little to 
no coordination of cancer research. In NIH there are several institutes 
and government wide, there is, for example, Centers for Disease 
Control, the Veterans Administration, the Defense Department.
    Question. How does NIH coordinate among NIH institutes and among 
all agencies to government to (1) avoid duplication in research and (2) 
to close gaps in areas that are receiving inadequate attention?
    Answer. While the National Cancer Institute (NCI) generally has the 
lead within the Federal government on most cancer research, many 
research questions of interest to NCI deal with issues that are also 
related to the mission of other NIH institutes and other entities 
within the Federal government. In order to avoid duplication and to 
help ensure that proper attention is provided to all promising areas, 
NCI is engaged in many efforts of collaboration and coordination with 
other Federal agencies.
    Interagency coordinating groups.--One of these efforts is to 
organize or participate in specific interagency coordinating groups. 
For example, in the area of environmental cancer, NCI organized the 
Interagency Collaborative Group on Environmental Carcinogenesis over 17 
years ago. Other members of this group include the National Institute 
of Environmental Health Sciences; the National Library of Medicine; the 
National Toxicology Program; the Centers for Disease Control and 
Prevention (CDC); the Food and Drug Administration (FDA); the Armed 
Forces Institute of Pathology; the U.S. Army Biomedical Research and 
Development Laboratory; the Consumer Product Safety Commission; the 
Department of Energy; the Department of Labor/Occupational Safety and 
Health Administration; the Department of Transportation; the National 
Institute of Standards and Technology; and the Smithsonian Institution. 
NCI and CDC, especially its National Center for Environmental Health, 
also have regular meetings to identify and evaluate areas for joint 
collaborations.
    CDC also participates in funding with NCI the National Cancer 
Policy Board. This board has been established by the National Academy 
of Sciences to bring together constituencies concerned about cancer 
control with those who conduct research and deliver health services. 
Given that cancer remains the second leading cause of death among women 
in the United States, NCI has been committed to the support of the 
goals and objectives of the National Action Plan on Breast Cancer 
(NAPBC), which unites the efforts of all HHS and other Federal agencies 
and private sector groups and is coordinated by the Office on Women's 
Health within the Office of the Secretary. Three senior NCI scientists 
serve on the NAPBC Steering Committee, and a number of NCI staff are 
active participants in the NAPBC working groups.
    Research collaborations.--There are numerous examples of 
coordinated cancer research. For instance, NCI has a close working 
relationship with the National Institute of Allergy and Infectious 
Diseases, and the NIH Office of AIDS Research in coordinating research 
on AIDS and AIDS-related malignancies. CDC is also involved, along with 
the Department of Energy and the Nuclear Regulatory Commission, in 
NCI's ongoing studies related to the cancer-associated effects of the 
Chernobyl nuclear power plant accident and the nuclear weapons programs 
of the former Soviet Union. NCI and the CDC are also coordinating the 
preparation and storage of cell lines derived from the only relatively 
large, representative, population-based collection of blood samples of 
the U.S. population. This collection of cell lines is expected to 
significantly facilitate the evaluation of gene-gene and gene-
environment interactions in development of a variety of human diseases 
including, but not limited to cancer.
    In radiation-related research, NCI and CDC's National Center for 
Environmental Health have a Memorandum of Understanding to highlight 
the respective roles of these agencies and identify specific approaches 
to coordinate activities. NCI, in collaboration with CDC and the 
Department of Veterans Affairs, is currently updating its 
radioepidemiologic tables. These tables, originally prepared by NCI, 
present data linking risk for cancer to exposure to radioactive 
materials, and are based on complicated calculations and risk 
assumptions. The Department of Veterans Affairs is requesting the 
update because the original tables date back to the mid 80's.
    Cancer control.--One of the more prominent interactions between NCI 
and CDC is the noteworthy transition of tobacco control research to 
application seen in the transfer of the successful American Stop 
Smoking Intervention Study (ASSIST) research program in 17 States from 
NCI to CDC for full implementation across the nation. NCI also holds 
regular meetings with CDC's Office of Smoking and Health for the 
purpose of coordinating tobacco initiatives.
    Cancer Surveillance.--NCI and CDC are both sponsoring organizations 
of the North American Association of Central Cancer Registries (NAACCR) 
which works toward coordinating population-based cancer registries, 
including NCI's Surveillance, Epidemiology, and End Results (SEER) 
Program and CDC's National Program of Cancer Registries. NCI is also 
working with CDC to determine how to add questions on health behaviors, 
screening, and health status to the 1999/2000 National Health Interview 
Survey Supplement, and discussions are ongoing on the use of other 
surveys in which NCI might be able to participate. NCI is providing 
support for a DNA repository that is being established as part of the 
CDC-supported National Health and Nutrition Examination Survey (NHANES) 
III. This repository will be available for studying genetic 
polymorphisms in about 1,000 people.
    Cancer Education.--Several years ago, NCI began developing a 
Partnership Initiative for cancer education programs that includes 
agreements between NCI and other Federal agencies, voluntary 
organizations, and the corporate sector. For example, in a cost-saving 
partnership with the Food and Drug Administration, the Cancer 
Information Service (CIS), NCI's nationwide cancer information, 
referral, and outreach service, is providing callers with referrals to 
FDA-certified mammography facilities. The NCI is also partnering with 
CDC to insure the best utilization of Federal resources for breast and 
cervical cancer screening services provided by CDC through its State 
health department grantees. On June 15, 1996, the United States Postal 
Service issued a 100 million new breast cancer awareness stamps and 
launched a unique partnership with the Cancer Information Service. Each 
sheet included the CIS toll-free telephone number--1-800-4-CANCER. The 
effort also included coordinated community outreach efforts throughout 
the country to raise awareness about breast cancer and what to do about 
it.
    NCI is also providing educational program support to the 
partnerships between NCI and the Department of Defense and the 
Department of Veterans Affairs to increase access to clinical trials. 
Since the Health Care Financing Administration launched its awareness 
campaign on Medicare coverage for mammograms, the CIS telephone service 
has also been alerting Medicare-eligible callers interested in 
mammograms to the HCFA benefits. NCI and CDC staff, in conjunction with 
the National Action Plan on Breast Cancer, are also collaborating on 
the development of genetic education materials, including a CD-ROM 
about genetic testing.
    Cancer information dissemination.--Since 1995, NCI and CDC have 
collaborated on efforts to improve the access of underserved 
populations to the CIS through work with state health departments. The 
NCI and CDC also cooperate on the ``5 A Day'' Program, which seeks to 
spread the message that a diet rich in fruits and vegetables may help 
prevent cancer. The NCI offers supplements to CDC grantees to 
incorporate evaluation materials for the ``5 A Day'' activities in 
their States into their own projects. NCI and CDC also collaborated 
recently on an advertisement in Family Circle Magazine encouraging 
readers to consume at least 5 servings of vegetables and fruits per 
day.
    Question. Do we need a better mechanism? When will we conquer 
cancer?
    Answer. In 1971, Congress passed the National Cancer Act, 
increasing resources for cancer research and broadening the mandate of 
the National Cancer Institute (NCI), the principal Federal agency 
supporting and conducting cancer research. It created the National 
Cancer Program (NCP) to encompass the research programs of the NCI and 
relevant programs of other National Institutes of Health (NIH) 
institutes, centers, and divisions (ICDs), Federal agencies, and non-
Federal organizations. The National Cancer Program has enabled a very 
active and wide ranging national program for waging war against this 
disease.
    Coordination of the many activities that comprise the National 
Cancer Program calls for exchange of information, avoidance of overlap 
and duplication, support of the many areas of expertise needed to 
overcome cancer, and recognition and stimulation of research 
opportunities that lead to understanding the etiology and biology of 
cancer and thus provide the means to control and prevent it. NCI acts 
as the facilitator of this concerted effort against cancer.
    As evidenced by the improving statistics for cancer incidence and 
mortality, we have made considerable progress in unraveling the mystery 
of cancer causation and developing some effective treatments. There is 
still much to be done and we look forward to a continuing strong effort 
to rid the nation of this disease.
    Question. What do we need to do to conquer cancer?
    Answer. NCI has stated that a three-pronged approach is necessary 
to achieve progress in conquering cancer which would: (1) sustain the 
proven research programs that have enabled us to come this far; (2) 
seize extraordinary opportunities to further progress made possible by 
our previous research discoveries; and (3) create and sustain 
mechanisms that will enable us to translate rapidly our findings from 
the laboratory into practical applications that will benefit everyone.
    Progress is needed on many fronts and the Department is ready, 
within its available resources, to pursue all scientific opportunities 
as they arise. As examples of areas where additional progress is needed 
before cancer is likely to be conquered, it is important for scientists 
to determine the most effective age to begin cancer prevention programs 
related to risk factors such as tobacco use, sun exposure, and diet and 
nutrition. Increasing the access of the research community to recent 
advancements in mouse models of human cancer is also important to the 
fight against this disease, as is the need to expand access of patients 
to clinical trials to test novel approaches to the treatment and 
prevention of cancer.
    Improvements are needed in our abilities to detect cancer at its 
earliest stages, when the chances for longer-term survival following 
treatment are the greatest. To address this, NCI is planning to launch 
the Early Detection Research Network, an interdisciplinary, multi-
center effort to discover and coordinate the evaluation of early 
biological indicators, or biomarkers, of an elevated risk or presence 
of a cancer. We also expect that tumor diagnosis and classification 
will be revolutionized in the coming years as emerging knowledge in 
molecular genetics is applied; tumors will be more accurately diagnosed 
when the system of tumor classification is changed from a visual to a 
molecular basis.
    Unprecedented opportunities exist to exploit recent advances in 
biology, chemistry, and technology to accelerate the discovery and 
testing of new cancer therapies. NCI is currently taking steps to 
accelerate and improve the system for costly and specialized process 
involved in drug synthesis, formulation, pharmacology, and toxicology 
testing necessary to launch initial clinical trials. The meet the 
complex challenges of cancer, we also need to train new kinds of 
scientists that cross disciplinary boundaries; increase our training of 
physicians in the skills of clinical research; and attract increased 
numbers of minority students and young scientists into all aspects of 
cancer research.
    Breast cancer, environmental risk factors.--Breast cancer advocates 
charge that genetics does not account for all cancers, citing how rates 
vary significantly between and within countries. Women in Japan have 
about 5 times lower breast cancer rates than women in the U.S. And 
rates in the Northeastern U.S. are substantial higher than in the 
South. These advocates maintain that NH-I/NCI does not give sufficient 
attention to environmental risk factors.
    Question. Do you agree?
    Answer. The National Cancer Institute (NCI) has a long history and 
an increasing investment in studying environmental causes of cancer. In 
fiscal year 1997, NCI spent $405 million in this area which has 
expanded to an estimated $480 million in fiscal year 1999, an 18.5 
percent increase. NCI supports a range of studies to identify the 
mechanism of action of non-infectious agents, conditions, or procedures 
contributing to the development of cancer. Recently, NCI has recognized 
the genetic components of cancer, and has a variety of genetic research 
programs supported at about $90 million. This field is expected to 
provide a new set of tools for exploring the complex research questions 
of the environmental contribution to the development of cancer.
    It has been very difficult to identify environmental causes of 
cancer. For example, in the area of common breast cancer, we know that 
high doses of irradiation are dangerous. But not many women who get 
breast cancer have a history of high dose irradiation. So, we are also 
studying radon exposure, x-ray use, and whether subgroups of women have 
special susceptibility. NCI has many studies looking at chemical, soil 
components, air and electromagnetism.
    We do not have a definite culprit yet. This means we must keep 
looking for new tools and new forms of analysis that will illuminate 
the problem in a way we can understand. The reason that it is so 
challenging to find environmental causes of cancer is that we are all 
exposed to multiple chemicals and molecules in the water, air, and 
food. Each incident is a very low exposure level with a cumulative 
effect over many years. Thus, measurement of the cause and assessment 
of the later effect are quite complex problems. The development of the 
field of genetics may offer elegant tools for solving the measurement 
and assessment issues. The genomic techniques being advanced in cancer 
research today can give us ways to address the roles of inheritance, 
exposure to environmental stressors or microorganisms, and the 
development of cancer. Some genes involved in human cancers have 
already been identified and mapped to a location on the human genome. 
Characterizing the activity of these genes in cellular functions is 
central to determining the roles that they play in the development and 
progression of cancer. The use of a new technology, cDNA microarrays, 
may also provide a major breakthrough for environmental cancer as well 
as benefitting a number of endeavors in business and criminal justice. 
The microarray technology allows us to trace to genetic differences in 
the cancer cells. NCI's current efforts with microarrays focus on 
lymphoma research and have produced a chip called the Lymphochip. 
Analysis using the lymphochip reveals the fingerprints of genetic pre-
disposition and exposure to environmental carcinogens.
    Question. How do you involve advocates in planning and priority 
setting?
    Answer. The role of patients and advocates in decision-making at 
the National Cancer Institute (NCI) has grown in recent years as NCI's 
mechanisms for obtaining and utilizing their input have expanded.
    In 1996, NCI established the Office of Liaison Activities (OLA) to 
serve as a central point of contact and link to cancer advocacy 
organizations, and to strengthen NCI's relationships and cooperation 
with these groups. With the help of that office, the NCI Director, Dr. 
Richard Klausner, established the Director's Consumer Liaison Group 
(DCLG), the first all-consumer advocate advisory committee at NCI and 
the National Institutes of Health (NIH). The DCLG is a landmark 
initiative that brings together a diverse group of consumer advocates 
and scientists on a regular basis to address key issues in cancer 
research.
    By virtue of its own work, and by facilitating the broader 
participation of other consumer advocates in various NCI activities, 
the DCLG: (1) ensures that cancer patients help to shape the course of 
NCI's efforts to eradicate this disease; (2) provides a rich source of 
ideas and viewpoints for NCI; (3) gives the cancer advocacy community 
an opportunity to provide input in the planning of NCI programs and 
future directions; (4) is a channel for consumers to voice their 
opinions and concerns; and (5) provides NCI with advice and feedback 
from the consumer community on a broad array of issues.
    NCI's OLA also facilitates and tracks other NCI activities 
involving cancer consumer advocates, including the following:
    Participation on a variety of NCI advisory committees, including 
the National Cancer Advisory Board (NCAB), and review groups to help 
NCI determine the current state of research in the most prevalent 
cancers affecting men and women, such as prostate and breast cancers.
    Participation on Planning Committees to identify new extraordinary 
opportunities for research to be addressed in the future.
    Participation in workshops in 1996 and 1997 to shape the research 
priorities of the Office of Cancer Survivorship (OCS), which was 
established in 1996.
    Participation in a workshop in the fall of 1998 to identify gaps in 
reproductive research for cancer survivors sponsored by NCI's Cancer 
Therapy Evaluation Program.
    Serving on NCI peer review groups evaluating special competitions 
for contracts and grants. In 1998, for example, consumers served as 
full voting members of a peer review panel evaluating grant 
applications received in response to NCI's request to develop research 
projects in cancer survivorship which were awarded in the fall of 1998. 
This year, NCI expanded its use of consumers in review panels for 
grants to cancer centers and for grants supporting Specialized Programs 
of Research Excellence on specific cancers. They also participate in 
the review of grant and contract applications for clinical studies and 
population-based (epidemiological) research.
    Recognizing the importance of receiving input from all areas of the 
cancer research enterprise, NCI continues to reach out to various 
constituency groups through a number of mechanisms to seek guidance on 
promising new avenues of research. This approach is most recently 
exemplified through NCI's Progress Review Groups (PRGs) in Breast and 
Prostate Cancer.
    The PRGs were first convened in 1997. They were charged with 
developing a national plan consisting of a description of ongoing 
scientific activities and investigations relevant to breast and 
prostate cancer and listing, in priority order, the scientific 
opportunities that should be pursued. Each Review Group was composed of 
prominent members of the scientific, medical, industrial, and advocacy 
communities in order to represent the full spectrum of expertise needed 
to develop comprehensive recommendations on the cancer research agenda.
    In January 1999, the NCI held meetings with each PRG to discuss 
this response and found that the PRG members are pleased with both the 
Institute's overall response and the Institute's response to individual 
recommendations. NCI and the PRG members plan to meet in a year to 
discuss the progress of the implementation and to address any necessary 
mid-course corrections.
    Overall, both the NCI and the participants were pleased with the 
outcome of the PRGs, and we consider the approach to be a notable 
success. The PRG mechanism was particularly successful in providing a 
foundation on which future research directions can rest. However, the 
process was long, time-consuming, and costly, and NCI staff and PRG 
members found the PRG process itself to be too intensive to do 
routinely for all cancers. That said, NCI learned a great deal about 
what works and, just as importantly, what does not work in conducting a 
review of this magnitude, and it is quite possible that a streamlined 
version of the PRG process will be employed in the future for other 
cancers.
    Question. What is the proper balance, between genetic vs. 
environmental risk factors?
    Answer. This question has a complex answer that has been much 
discussed at NIH, in Congress, and among our many advisory groups in 
the context of directing funds to specific diseases and in the setting 
of basic research priorities. A particularly important issue in 
balancing genetic and environmental research priorities is the 
contribution basic research makes to the eventual solution of medical 
problems. Basic research enables the new insights into the disease that 
may lead to a new cure or treatment. About half the NCI budget is 
devoted to basic research, the core of our national cancer research 
program. These basic research projects may appear initially to be 
unrelated to any specific disease, but often contribute substantially 
to the long chain of discoveries leading to improved health.
    There is no ``right'' amount of money, percentage of the budget, or 
number of projects for genetic vs. environmental risk factors. NCI 
responds to the needs of breast cancer researchers and public health 
needs, by weighing multiple factors including the incidence, severity, 
and cost breast cancer as well as scientific merit assigned by peer 
review, the likelihood of an important result, the necessity to ensure 
diversity in the portfolio.
    We recognize a desperate need to find accurate markers of breast 
cancer that are sensitive and predictive for the development of this 
dreadful disease so that it can be caught early. NCI has launched a 
major program, the Cancer Genome Anatomy Project (CGAP), now funded for 
$8 million, which has the potential to provide this information by 
discovering new leads on the genetic basis of breast cancer.
    The overall goal of CGAP is to achieve the comprehensive molecular 
characterization of normal, precancerous, and malignant cells. Toward 
that end, NCI has implemented several CGAP components to provide an 
information and technology infrastructure for the biomedical 
researchers. One of these components, the human tumor gene index (TGI), 
was fully implemented in May 1997 with the initial goal of identifying 
genes expressed during development of tumors in five major cancer 
sites--markers for breast, colon, lung, ovary, and prostate. For breast 
cancer, the TGI has produced more than 15,000 DNA sequences from 11 
cDNA libraries derived from human breast tissue and tumors, resulting 
in the discovery of over 350 human genes never seen before in any human 
tissue. The next step is to assess the potential value of these newly 
discovered genes in molecular diagnostics and to develop sensitive and 
specific tests for the early detection of cancer. We will probably find 
that the majority of these genes are expressed elsewhere in the body, 
or as a result of a process other than development of breast cancer. 
However, we are excited about this new tool's potential to help us 
develop a test for early detection of cancer.
    NCI's new initiative ``The Director's Challenge: Toward a Molecular 
Classification of Tumors'' will provide $50 million over five years to 
exploit emerging comprehensive molecular analysis technologies to 
change the way tumors are classified from their microscopic appearance 
to their molecular characteristics. In this initiative, information and 
reagents developed through the CGAP program will be utilized to develop 
molecular profiles of breast and other tumors and correlate gene 
expression patterns with a variety of clinical parameters. This 
research, carried out by multidisciplinary groups, will focus on the 
application of modern molecular technologies to the analysis of 
specimens from breast and other tumors, including comparisons between 
normal, precancerous and malignant tissues. The primary goal of this 
initiative is to define profiles of molecular alterations in tumors 
that can be used to define specific subsets of patients, for example 
node-negative breast cancer patients, in which the biological 
heterogeneity is high. Such profiles will lay the groundwork for future 
studies to validate the clinical utility of molecular-based 
classification schemes. A tangible goal of this initiative is the 
generation and dissemination to the scientific community of the 
extensive, information-rich data sets expected to result from these 
projects.
    To promote progress in early detection of breast and other tumors, 
NCI is establishing a multi-institutional consortium to develop, 
evaluate and validate biomarkers for cancer detection and risk 
assessment. This consortium will allow us to take the potential markers 
discovered through CGAP and test them in people with or at risk for 
cancer. This initiative, the Early Detection Research Network, is 
funded for $61 million over five years and will link centers of 
expertise in tumor biology, diagnostics technologies, and clinical 
trials methodology in academia and industry to develop high-throughput 
assays suitable for clinical testing. With a focus on breast cancer, 
these assays will involve advanced analytic tools that permit a 
detailed examination of the molecular basis of carcinogenesis, provide 
the ability to identify the molecular and cellular signatures of 
cancer, and to explore gene-environment interactions relevant to early 
detection. To expedite the discovery and development of more sensitive 
and specific markers for early and aggressive disease, NCI will also 
establish links between activities of the Network and programs in 
academia and industry that are developing libraries of all known 
secreted proteins in mammalian cells.
    Feinstein clinical trials database.--The FDA Modernization Act of 
November 1997 requires HHS to establish a database of all clinical 
trials so that patients and physicians can find out what research is 
being conducted on various diseases. This bill, now law, also required 
creation of a toll-free telephone number.
    Question. I know there have been some planning meetings. What 
exactly is the status? When will it be operational? When can I call 
that toll-free number and find out about a trial?
    Answer. The FDA Modernization Act required establishment of a 
database of clinical trials and also a toll-free telephone number for 
disseminating the database information. Thus, creation of the database, 
including a search engine, is a first step, with the toll-free 
telephone a later step. The database information is well underway, with 
seven separate databases now available on NIH's Home Page at http://
www.nih.gov/health/trials/index.htm. These seven are: CancerTrials; 
AIDS clinical trials; trials conducted at the NIH Clinical Center in 
Bethesda, Maryland; eye disease trials; rare disease trials; heart, 
lung and blood disease trials; and trials for infectious, immunologic, 
and allergic diseases. A central search engine is being developed by 
the National Library of Medicine that can automatically search all of 
the databases and at the same time, other NIH institutes are building 
their databases of clinical trials that will eventually be linked to 
the central search engine. Our plan is to have all the NIH clinical 
trials on the Internet by the end of 1999. We will also be establishing 
a clinical trials database to which other Federal agencies and the 
private sector will submit information (as required by the law), with a 
goal of beginning this database in 2000. The toll-free telephone system 
will depend upon having these linked databases established and 
operational. We are already starting to plan for the toll-free 
telephone line, however. A Request for Proposals (RFP) is being 
developed now for a two-year study to determine how best to set up the 
toll-free telephone line, aimed at learning how to do this in the most 
effective, cost-efficient manner and also to pilot some options for the 
public service. In the meantime, NIH does have some toll free telephone 
lines that people can use to learn about clinical trials (in addition 
to getting other health-related information). The most well known is 
the Cancer Information Service, 1-800-4-CANCER. The other NIH toll-free 
telephone numbers can be found on the NIH Home Page at http://
www.nih.gov/news/infoline.htm.
    Medicare cuts.--The administration has proposed substantial cuts in 
Medicare funding to hospitals. These are in addition to cuts enacted 
under the Balanced Budget Act of 1997. California hospitals will have 
Medicare payments cut by over $5.2 billion with the majority of cuts 
taking place after the year 2000. User fees on hospitals and doctors 
totaling $1.516 billion for Medicare services are also proposed.
    California hospitals had negative operating margins in 1997-1998 
according to the California office of Statewide Health Planning and 
Development. HHS officials have quoted 16 percent hospital margins, but 
note that this figure represents aggregate, national data and said 
their figures could not be broken down by region.
    Question. Has the Department measured how prior and proposed cuts 
affect particular regions or states? In California for example, the 
average length of hospital stay is one day shorter than the national 
average because of the heavy prevalence of managed care.
    Answer. We have thoroughly assessed the potential impacts of a zero 
update to the hospital inpatient prospective payment amounts for fiscal 
year 2000, and believe that hospitals are well able to absorb those 
impacts. Hospitals' Medicare costs per case declined in real terms from 
1994 through 1997, while payments under the prospective payment system 
increased each of those years. As a result, in 1997, hospitals' 
Medicare operating margins were 16.1 percent higher-than the 1995 
margins which prompted Congress to enact a zero update to the 
prospective payment amounts under the Balanced Budget Act.
    In California, hospitals' Medicare operating margins have been 
among the highest in the country recently. In 1997, for example, 
Medicare payments exceeded hospitals' costs by 23.6 percent. California 
hospitals have successfully reduced average lengths of stay well below 
the national average. Because shorter lengths of stay generally mean 
lower costs, this is a big factor in their above-average operating 
margins.
    Question. Has the Department considered how cuts in Medicare will 
affect the ability to provide services to those presently served by 
Medicare and those for who?
    Answer. As noted above, the latest available data show that 
Medicare is paying well in excess of hospitals' costs. Thus, we do not 
believe that holding Medicare prospective payments at their fiscal year 
1999 level in fiscal year 2000 will adversely affect hospitals' ability 
to provide services to Medicare beneficiaries. To the contrary, we 
believe that a zero update represents a prudent and appropriate course 
designed to allow the Hospital Insurance Trust Fund to benefit from 
hospitals' efficiency improvements over the last several years.
    Health professions shortages.--The budget proposes complete 
elimination (0 funding) of the Primary Care Medicine and Dentistry 
Program which provides practitioners who are trained to work in 
underserved areas--400 nationwide in the fiscal year 1999 budget. The 
program received $80 million in fiscal year 1999. A total reduction in 
all health professions programs of $50 M. is requested. The National 
Health Service Corp which provides incentives for health practitioners 
to practice in underserved areas was able to only fund 60 percent of 
the requests for providers in underserved areas in 1999 and the 
Department has proposed no additional funding for these unmet needs.
    Question. California has many underserved urban and rural areas, 
183 in primary care, by one count. How can you expand the availability 
of health services by reducing training of qualified health 
professionals?
    Answer. The Department recognizes that the training of primary care 
physicians and physician assistants is a critical need. However, there 
are also severe national needs in other areas. For these particular 
programs, the Department believes that other forces such as market 
demand, the Medicare program, the states, and educational institutions 
will provide resources for training of these health care providers.
    Tobacco settlement funds, federal share.--States settled with 
tobacco companies in the fall of 1998 for $206 billion. California will 
get approximately $25 billion. Current Federal law requires recoupment 
of the Federal share of Medicaid funds, and the administration had 
received some funds from earlier settlements by individual states but 
has suspended such efforts for the present.
    White House domestic policy adviser Bruce Reed has said that the 
Administration will oppose legislation that would permit the states to 
keep these settlement funds outright. He said that the administration 
will work with the states and Congress to resolve the Federal claim in 
exchange for a commitment to use the Federal portion on shared 
priorities, citing youth smoking, improved public health, and 
assistance to children. The fiscal year 2000 budget includes recoupment 
of $9.1 billion in recoupment through 2004.
    Question. What are the Department's plans to go ahead with the 
recoupment?
    Answer. Current Medicaid law requires HCFA to recoup the Federal 
share (on average 57 percent) of all State third-party liability 
collections, including the recent State tobacco settlements. Since US 
taxpayers paid a substantial portion of the Medicaid costs that were 
the basis for the State settlements, the Budget assumes that the 
Federal government will follow the law and claim its share of the 
proceeds.
    However, the Administration will work with the States and the 
Congress to enact tobacco legislation that, among other things, 
resolves these Federal claims in exchange for a commitment by the 
States that the Federal share of the settlement's proceeds will be 
spent on shared national and State priorities: to reduce youth smoking, 
protect tobacco farmers, improve public health, and assist children.
    It is for this reason that the Administration has delayed action on 
claiming the Federal share of the State tobacco settlements until 
fiscal year 2001 so that we can work with the States and Congress over 
the next year on mutually agreeable legislation.
    Question. The argument has been advanced that the settlement 
resolves other issues besides Medicaid, including antitrust issues. 
What plans does the Department have to discuss with the states how the 
Federal claim is to be determined?
    Answer. The Administration believes that Medicaid costs were the 
basis for the States' recovery. Regardless of each State's litigation 
against the tobacco companies, all of the States specifically agreed to 
include present and future Medicaid claims in the settlement. Current 
Medicaid law requires HCFA to recoup the Federal share--on average 57 
percent--of all State third party liability collections, including the 
recent State tobacco settlements. Since the Federal government paid a 
substantial portion of the Medicaid costs that were the basis for the 
State settlements, the Budget assumes the Federal government will claim 
its share of the proceeds. However, the Administration proposes to work 
with the States and with Congress to enact tobacco legislation that, 
among other things, resolves these Federal claims in exchange for a 
commitment by the States to use tobacco money to support shared State 
and national priorities which reduce youth smoking, promote public 
health, help children, and assist tobacco farmers and their 
communities.
    Question. What role will the Department take in the 
Administration's plans to work with states about use of tobacco 
settlement funds? What services would the Department target and what 
flexibility would go to the states in the use of the funds? How can we 
assure that they will be used for tobacco-related health purposes?
    Answer. The President has made clear his desire to work with 
Congress on legislation that would waive of the Federal share of the 
multistate tobacco settlement if the States agree to use these funds 
for shared State/Federal priorities to reduce youth smoking, protect 
tobacco farmers, assist children, and promote public health. The 
Department has been working closely with other parts of the 
Administration on this issue.
    Bioterrorism initiative.--You have proposed $230 million to counter 
bioterrorism threats, for vaccine research and development, public 
health surveillance, and Local Metropolitan Medical Response Systems. 
The Department of Defense and Department of Justice would also receive 
funds for training.
    Over $300 million was appropriated nationwide in fiscal year 1999. 
In California, the bulk of funds to date for emergency response has 
been directed to the largest metropolitan areas. There have been a rash 
of threats involving anthrax in recent months, over 20 alone in Los 
Angeles. Threats also have been directed at Congress, and Federal 
agencies, very recently.
    Question. How is the Department coordinating its initiatives with 
other Federal agencies and with state and Local agencies?
    Answer. HHS works closely with several other agencies to ensure 
that plans for managing the medical consequences of terrorist acts are 
well integrated with our emergency response systems. We work especially 
closely with the relevant components of the Departments of Justice 
(DOJ), Defense (DOD), and Veterans Affairs (VA), and with the Federal 
Emergency Management Agency (FEMA). Some examples of this cooperation 
include: providing medical technical assistance to the Federal Bureau 
of Investigation (FBI) when confronted with situations or threats 
potentially involving anthrax; supporting emergency medical care and 
assistance to US citizens overseas through specific requests from the 
State Department; participating in activities of DOJ's National 
Domestic Preparedness Office; and involving other agencies in an 
interagency process to review contracts to related to some of HHS's 
bioterrorism initiatives. HHS is also represented on the Weapons of 
Mass Destruction Preparedness Working Group.3
    Question. How has the Department prioritized resources to target 
for funds? Should metropolitan areas be the first priority?
    Answer. Departmental resources have been targeted to five primary 
areas: (1) deterrence of biological terrorism; (2) surveillance for 
unusual outbreaks of illness; (3) medical and public health response; 
(4) development of a national pharmaceutical stockpile; and, (5) 
research and development.
    States and local communities are the primary priorities for 
funding. For example, the Centers for Disease Control and Prevention 
(CDC) is working to upgrade public health capability to counter 
bioterrorism through State and local health departments, and within 
CDC. The medical and public health response initiative works 
extensively through local governments to develop Metropolitan Medical 
Response Systems (MMRS). The MMRS development program, begun in fiscal 
year 1995, targets the largest metropolitan areas in the United States 
and seeks to improve local capability and capacity to respond to a 
terrorist event. There are 27 cities currently engaged in the MMRS 
development process. HHS intends to begin development in 20 additional 
metropolitan areas during fiscal year 1999, and to work with the first 
27 cities to enhance the biological preparedness component of the 
systems. For fiscal year 2000, we are requesting funds to start systems 
in 25 more cities.
    Question. In addition to the first responders such as fire, police, 
and EMS, other aspects of the health care infrastructure will be 
involved, including hospitals and emergency departments. How is the 
Department planning to include assistance to such entities in its 
initiatives?
    Answer. The MMRS development program contractually requires 
communities to develop integrated systems plans for the public health 
and medical response to incidents involving weapons of mass 
destruction. This planning process must include not only the 
traditional emergency response agencies (e.g., police, fire, EMS, 
HAZMAT), but also hospitals and other critical public health agencies.
    In an effort to improve the local capability and capacity to 
respond to the consequences of biological terrorism, the Department is 
planning to revisit the 27 original MMRS cities to develop plans for 
the public health and medical consequences of biological terrorism and 
naturally occurring pandemics.
    Closely related to this effort, CDC has been tasked to strengthen 
the nation's public health infrastructure. CDC will award cooperative 
agreements to State health departments, to help upgrade State and local 
surveillance capabilities. These agreements will focus on State and 
local preparedness, enhancement of detection, epidemiological and 
laboratory capabilities, and the Health Alert Network.
    Question. Does the Department have any special plans to address the 
issue of threats and hoaxes in its initiatives?
    Answer. The response to threats and hoaxes regarding any form of 
terrorism, including bioterrorism, is in the crisis management domain 
of the FBI. The FBI collaborates closely with HHS in analyzing threats 
involving the terrorist use of weapons of mass destruction, to 
determine their credibility and the response required. Many recent 
threats have been determined to be hoaxes. Since there is always an 
element of anxiety with regard to any terrorist threat, particularly 
biological, HHS has coordinated with the FBI to develop procedural 
advisories directed toward the FBI field elements who investigate such 
threats.
    Y2K planning.--An August 1998 GAO report said that HCFA's systems 
supporting Medicare are not Year 2000 compatible, that HCFA was ``far 
behind'' in repairing and testing systems. HHS has said they planned to 
have all HHS systems ``millennium compliant'' by December 1998.
    Question. Can we assure Medicare beneficiaries that they will see 
no disruption in payments and services in January 2000?
    Answer. HCFA has made significant progress in readying its computer 
systems for the Year 2000, and will continue its aggressive work to 
ensure that health care providers will be paid for the care they give 
to Medicare beneficiaries. Although HCFA can assure that Medicare's 
claims processing and payment systems will function, continuity of care 
will depend on the providers' ability to continue to operate their 
offices and generate claims that can be processed by those systems. 
Doctors, hospitals, and other providers are responsible for ensuring 
that their systems are Year 2000 compliant. Because of its concern for 
continuity of care to Medicare beneficiaries, HCFA has embarked upon an 
unprecedented outreach effort to help its partners meet their 
responsibility, as we are meeting ours.
    Lead screening.--A GAO report has documented that very few children 
on Medicaid are screened for lead. California has more than 200,000 
children with elevated levels of lead in their blood. Lead toxicity can 
harm cognitive development and at higher levels can case seizures, coma 
and death. Federal law requires Medicaid programs to ensure that 
children receive lead screening.
    Question. What are you doing about this? Are you enforcing this 
requirement?
    Answer. The Health Care Financing Administration is establishing a 
Lead Screening Workgroup to implement and follow-up on the progress 
toward fulfilling the recommendations of the GAO report. Members of the 
workgroup include the Centers for Disease Control and Prevention (CDC), 
the Health Resources and Services Administration (HRSA), Agency for 
Health Care Policy and Research (AHCPR), and the Administration for 
Children and Families (ACF). We are in the process of developing a 
comprehensive departmental action plan for implementing the 
recommendations.
    In addition, HCFA has several action items which we will be 
addressing in the next few months. We are releasing a letter to all 
State Medicaid Directors reiterating our mandatory policy on lead 
screening and the importance of lead screening for Medicaid eligible 
children. We also intend to clarify our policy on several reimbursement 
issues which GAO raised.
    We are also in the process of revising the HCFA-416, the annual 
reporting form for Early and Periodic Screening, Diagnostic and 
Treatment (EPSDT) services, to include a line item which will require 
states to report how many children received screening blood lead tests.
    Children's health insurance program (CHIP).--The Children's Health 
Insurance Program (CHIP) is a Federal program enacted in 1997 to 
increase availability of health insurance for children and has been 
implemented in California as the Healthy Families Program. For children 
who are not eligible for Medi-Cal but whose families are poor at less 
than 201 percent of poverty level, insurance is available at cost of 
$4-$9 per child per month (up to maximum of $27). California has 
received $859 million each year for fiscal year 1997, fiscal year 1998, 
and fiscal year 1999 for a total of $2.577 billion for the three years 
in Federal funds. Enrollment has been slow in California and other 
states. As of mid-February 1999, 71,958 California children were 
enrolled out of 250,000--385,000 who are eligible.
    Impediments to enrollment in California include a complicated 
application and fear by immigrant parents that signing up their 
children could affect U.S. residency and invite retaliation by the INS.
    Question. When will the new funding for outreach be available to 
states?
    Answer. The Administration's fiscal year 2000 budget includes two 
outreach proposals. Neither proposal makes new funds available, but 
increases state flexibility in using existing funding.
    These proposals are:
Expanding the use of outreach funding authorized under welfare reform
    This proposal would permit States to expand the use of a special 
$500 million Medicaid fund, enacted in the 1996 welfare law, now aimed 
at outreach for children losing welfare, to fund outreach to other 
children eligible for Medicaid, and to new children eligible for CHIP. 
In addition, the proposal would remove the sunset on the fund, 
currently scheduled for fiscal year 2000. This proposal is expected to 
increase Medicaid spending by $345 million over the next five years, 
including both administrative expenses and benefits.
Establishing a separate 3 percent CHIP outreach cap
    Under this proposal, spending for CHIP outreach would be removed 
from the 10 percent administrative cap and a separate 3 percent 
outreach cap would be established. States would be permitted to use an 
additional 3 percent of their total benefits expenditures for outreach. 
This proposal will allow States to increase spending on outreach, which 
will lead to accelerated outreach and benefits spending under the 
allotments. We expect that the overall CHIP spending baseline on 
outreach and benefits will increase $875 million from fiscal year 2001-
2004 as States identify more CHIP-eligible kids.
    Question. What efforts is the Department making to accelerate 
enrollment in California, especially in clarifying eligibility criteria 
with the Immigration and Naturalization Service?
    Answer. The CHIP law provides states with significant flexibility 
in designing their CHIP programs, including outreach. The Department 
continues to work with California and supports its efforts to increase 
enrollment in Healthy Families. A representative from HCFA attends 
California's monthly Board meetings of the Managed Risk Medical 
Insurance Board (MRMIB), and participates in the State's monthly joint 
meetings of the Healthy Families Advisory Committee and the Education 
and Outreach Committee. In addition, HCFA has participated in the 
public meetings of the workgroup that advises the State in its effort 
to revise the Healthy Families application. The first meeting was a 
public meeting attended by advocates, counties, providers, and other 
stakeholders; and the latter two meetings involved a wide range of 
advocates and counties. We have provided regular feedback to the State 
on its application revision efforts.
    HCFA also holds regular discussions with both the California 
Department of Health Services (DHS), which oversees the State's 
outreach activities for Healthy Families, and with MRMIB, the agency 
that administers Healthy Families.
    All of the State's outreach efforts have a focus on the Hispanic 
population, which comprises 75 percent of the Healthy Families 
Program's target population (Hispanics comprise 60 percent of all 
uninsured children who are eligible for Medi-Cal). HCFA continues to 
work with the State to improve outreach to Hispanics by getting 
California's revised application out as soon as feasible, providing 
direct funding for outreach to community-based organizations, widely 
distributing information about the Immigration and Naturalization 
Service (INS) policy to the Hispanic community, and improving outreach 
to those Hispanics whose eligibility is clear. The Department supports 
California's efforts to solicit further policy clarification from the 
INS and is working closely with the White House and INS to accomplish 
this goal.
                                 ______
                                 
             Questions Submitted by Senator Robert C. Byrd
                 the medicare subvention demonstration
    The Department of Health and Human Services (HHS), in conjunction 
with the Department of Veterans Affairs (VA), is conducting a 
demonstration project to provide important information on treating dual 
eligible, Medicare-VA beneficiaries. It is important to ensure that 
these beneficiaries receive quality health care.
    Question. What is the status of this demonstration and when will 
results be available?
    Answer. There currently is no demonstration project between the 
Department of Health and Human Services and the Department of Veterans 
Affairs. Because sections 1814(c) and 1835(d) of the Social Security 
Amendments prohibit Medicare payments to any Federal provider of 
services (except Indian Health Service), we cannot enter into a 
demonstration to pay for care at VA facilities for dual-eligible 
beneficiaries without statutory authorization.
    A memorandum of agreement was signed by the two Departments in 
September 1997 which provides the framework for a demonstration, 
pending authorization. We are providing technical assistance to Senate 
staff on legislation which would both protect the Medicare trust funds, 
and test the impact of a subvention demonstration on access to care for 
beneficiaries, quality of care, and cost of the program to the two 
Departments and beneficiaries.
    We received authorization in section 4015 of the Balanced Budget 
Act of 1997 to conduct a subvention demonstration with the Department 
of Defense at six sites. This demonstration is now operational and is 
being evaluated by an independent evaluator, as well as the General 
Accounting Office. Because the last two sites began delivering services 
in January 1999, it will be about another year before we have 
preliminary results on the program.
                       y2k and rural health care
    In many industries, the larger players are better situated in terms 
of addressing the Year 2000 computer problem (Y2K). In the health care 
industry, I am concerned that smaller health care providers may not be 
as far along in ensuring that their systems are ready for the new 
millennium, especially in rural areas where these providers are so 
important to the people they serve.
    Question. Is HHS working with rural hospitals to help them become 
Y2K compliant?
    Answer. HCFA is working on outreach to all Medicare providers to 
alert them to the need to resolve their Y2K problems and has made 
available a set of self-help materials to guide providers toward Y2K 
readiness. HCFA meets with a number of major medical associations 
regularly, including the National Rural Health Association. Also, HCFA 
is working to increase our efforts in the rural communities, because 
such communities may not have the resources available to take ready 
advantage of our Internet materials.
    In an unprecedented step in January 1999, HCFA sent letters to over 
1.3 million Medicare providers to provide important information 
regarding Y2K, and has trained speakers in all HCFA regional offices so 
they may present Y2K information to local and state provider groups, 
especially in rural areas.
    Question. What outreach efforts have been made, and where can rural 
health providers turn, for Y2K information?
    Answer. As mentioned previously, HCFA sent letters to all Medicare 
providers, has trained speakers to do Y2K outreach to State and local 
provider groups, and meets regularly with the National Rural Health 
Association (NRHA) and other rural health groups.
    In addition, HCFA made a presentation at NRHA's recent annual Rural 
Health Policy Institute, attended by over 275 individuals from over 41 
States to convey the Y2K message. Representatives from HCFA have 
attended rural health forums in Spearfish, South Dakota, and Lansing, 
Michigan, and plan to attend sessions in many other areas of the 
country to reach rural providers. Also, in a letter to every Member of 
Congress, HCFA offered to go to their districts to present the Y2K 
message to their provider constituencies.
    HCFA will intensify its efforts to reach rural providers by:
    Collaborating with additional rural provider associations;
    Talking with software vendors and billing services with a heavy 
rural provider clientele to see what efforts those organizations are 
doing to prepare their customers for Y2K;
    Ensuring that rural provider group meetings are attended by HCFA 
speakers to convey the Y2K message; and
    Encouraging rural associations to strengthen their own outreach 
efforts to their members.
    Further, providers can contact their Medicare contractor for free 
Y2K-ready software.
                           dietary guidelines
    It is my understanding that HHS is working in conjunction with the 
U.S. Department of Agriculture to update the Dietary Guidelines which 
provide important nutrition and health guidance to Americans. The fifth 
edition of the Guidelines is to be published in the year 2000. The 
section which addresses alcohol will likely be examined in this 
process. In recent years, research has been reported about alcohol's 
health benefits while other studies have shown health risks associated 
with alcohol use. The National Institute on Alcohol Abuse and 
Alcoholism (NIAAA) is currently conducting research on moderate 
drinking.
    Question. Given the ongoing research at the NIAAA about the health 
benefits and health risks of moderate drinking, can we be sure that 
accurate and complete information will be available to provide to the 
American public?
    Answer. NIAAA's data on health benefits and health risks of 
moderate alcohol consumption are available to the U.S. Department of 
Agriculture's Dietary Guidelines Advisory Committee. Numerous studies 
on this topic have been completed, and several more are underway. At 
this time, however, the data are incomplete. While research indicates 
that moderate alcohol consumption provides certain benefits, not enough 
is known about its risks. Another concern is that appropriate dosages 
for health benefits are not firmly established. In addition, the 
dichotomous view that alcohol is either only beneficial or only harmful 
is too simplistic. An alcohol dose that is beneficial to the heart, for 
example, may be implicated in other diseases.
    Many areas of risk associated with moderate alcohol use must be 
further delineated. For example, some studies indicate that moderate 
drinking is a risk factor for hemorrhagic stroke and breast cancer. 
Experimental studies in animals suggest that alcohol is a cocarcinogen 
or a tumor promoter. The mechanisms by which maternal alcohol intake 
damages the developing fetus remain unclear, as do the dosages of 
alcohol that trigger those mechanisms.
    While most people who drink do so moderately and without problem, 
some people should not drink at all, because they are genetically or 
environmentally vulnerable to alcoholism and its consequences. Also 
unknown at this time is the effect that a generalized public-health 
prescription for alcohol intake would have on progression to heavy 
drinking and alcoholism among this vulnerable group, as well as those 
in whom such risk factors are absent. It is worth noting that 
alcoholism is a very prevalent disease, from which 14 million adult 
Americans suffer.
    Currently, NIAAA devotes $3 million to the study of health benefits 
and health risks of moderate alcohol consumption.
                           underage drinking
    I wrote to you in January to urge you to update the reports issued 
in 1991 by the HHS Inspector General regarding youth and alcohol. The 
information in these reports has been helpful in understanding the 
scope and nature of our nation's underage drinking problem. However, 
the data is outdated.
    Question. Do you anticipate directing the HHS Inspector General to 
update these reports, and when might this be accomplished?
    Answer. Your request was forwarded to the Office of Inspector 
General and the Inspector General agrees that it is important and 
timely to update this work. The OIG is currently developing a study 
proposal for the fiscal year 2000 work plan and expects that this study 
would be complete by the end of fiscal year 2000.
       appalachian laboratory for occupational safety and health
    Question. What is the number of Full-Time Equivalents (FTE) for the 
Division of Safety Research and the Division of Respiratory Disease 
Studies at this facility in fiscal year 1999, and the number projected 
for fiscal year 2000?
    Answer. CDC expects the Division of Safety Research to use 107 FTE 
in fiscal year 1999 and in fiscal year 2000. CDC expects the Division 
of Respiratory Disease Studies to use 135 FTE in fiscal year 1999, and 
in fiscal year 2000.
    Question. Please provide the funding level for the above-mentioned 
Divisions in fiscal year 1999, and the projected level for fiscal year 
2000.
    Answer. For the Division of Safety Research, CDC's budget includes 
$11.8 million in fiscal year 1999 and $12.1 million in fiscal year 
2000. CDC's budget includes $12.0 million for the Division of 
Respiratory Disease Studies in fiscal year 1999, and $12.3 million in 
fiscal year 2000.
           the new occupational safety and health laboratory
    Question. How many FTEs are at this facility in fiscal year 1999, 
and what is the projected number of FTEs at this facility for fiscal 
year 2000?
    Answer. In both fiscal year 1999 and 2000, CDC's estimate for the 
number of FTE for the facility is 303.
    Question. Please furnish the funding level required for staffing 
and research for fiscal year 2000 at this facility.
    Answer. The funding level in fiscal year 1999 is $36.0 million. The 
proposed fiscal year 2000 funding level is $38.5 million, including 
both intramural and extramural research.
                                 ______
                                 
              Questions Submitted by Senator Slade Gorton
    The Administration is proposing another Medicare reduction beyond 
those included in BBA 97 of nearly $9 billion over 5 years, including a 
market basket freeze. The market basket freeze is being proposed at a 
time when even MedPAC is recommending a 0.7 percent update.
    Question. What is the justification for freezing hospital rates? Do 
you anticipate that it will impact on patient care?
    Answer. The results of our analysis are consistent with those of 
MedPAC. That is, through 1997, hospitals' Medicare costs per case 
continued to decline in real terms. This marked the fourth consecutive 
year of declining costs per case. Medicare PPS payments continued to 
rise throughout this period until the one-year freeze enacted by the 
BBA for fiscal year 1998. Based on the high Medicare operating margins 
during fiscal year 1996 and fiscal year 1997, we are confident that 
another one-year freeze in updates to hospitals' PPS payments is 
warranted, given the fact that hospitals' costs per case would have to 
have increased by nearly 6 percent per year since fiscal year 1997 for 
Medicare payments and costs to have reached the break-even point.
    As the inpatient hospital prospective payments compensate in excess 
of costs, on average, and as the system makes special provision for 
groups of institutions facing more difficult financial situations (such 
as smaller rural hospitals), we expect that Medicare rates will 
continue to support quality care for our enrollees.
    According to MedPAC, hospitals now paid 82 cents on the dollar for 
outpatient services. Once the BBA goes into full effect, it will go 
down to 78 cents. Rural hospitals get 73 cents on the dollar, while 
cancer hospitals will get 58 cents on the dollar.
    Question. If a hospital has a high volume of Medicare patients, 
such as some of the ones in my state, how would you expect it to 
survive if Medicare continues to pay less than the cost of actually 
providing patient care, particularly outpatient care?
    Answer. In the beginning of the Medicare program, we paid hospitals 
for furnishing outpatient services to Medicare beneficiaries based on 
the costs hospitals incurred to provide those services. Medicare 
legislation in the late 1980s made some changes to move away from 
recognizing full costs. For example, section 1861(v)(2)(S)(ii) of the 
Social Security Act (the Act) requires that for calculating outpatient 
payments for hospitals (other than sole community and critical access 
hospitals), we recognize only 90 percent of the costs hospitals incur 
for capital costs and 94.2 percent of the costs they incur for 
operating costs. In addition, Congress attempted to ``level the playing 
field'' across ambulatory sites in sections 1833(I)(3)(A) and 
1833(n)(1)(A) of the Act by requiring that we pay for certain hospital 
outpatient surgical, radiology and other diagnostic procedures based on 
the lower of (1) the hospital's costs or (2) a blended amount based, in 
part, on their costs and, in part, on the amount that Medicare pays 
under fee schedules in other ambulatory settings, i.e., ambulatory 
surgical centers and physician offices. As a result of changes such as 
these, we currently pay hospitals less than their full costs.
    Section 4523 of the Balanced Budget Act establishes a prospective 
payment system (PPS) for hospital outpatient services. This section 
requires payments under the new system to be based on an amount which 
reflects what the Medicare program would have paid for hospital 
outpatient services in 1999 under the current payment system plus what 
beneficiaries would have paid in 1999 as coinsurance under the new 
prospective payment system. To the extent that PPS payments are based 
on current Medicare program payments, they will incorporate the current 
level of cost reductions that hospitals experience now. Under the PPS, 
beneficiaries will pay less than they currently pay. Therefore, to the 
extent that PPS payments are also based on what beneficiaries will pay 
under the new system, hospitals will experience additional reductions 
in payments.
    In the September 8, 1998, proposed rule for the hospital outpatient 
PPS, we estimated that, in the aggregate, hospitals will experience a 
decrease in payments of 3.8 percent as compared to current payments 
they receive for hospital outpatient services. Our proposed rule 
estimates that rural hospitals and cancer centers will experience even 
greater decreases. However, in the proposed rule, we state that HCFA 
plans to do additional analyses to examine the way these hospitals 
coded their bills in order to try to determine whether their coding 
practices can explain the negative impacts. We also state that, 
although we have not provided for any payment adjustments in the 
proposed rule, following our analyses we will consider whether an 
adjustment is needed to moderate the impact on these types of 
hospitals.
    Many of the hospitals in my state are rural and they are just now 
beginning to feel the adverse impact of the BBA on their ability to 
deliver patient care services. The BBA has produced a number of 
unintended consequences that I suspect will be exacerbated by an 
additional reduction in Medicare spending. Many of these hospitals also 
operate a skilled nursing facility and a home health agency in order to 
serve their communities, and are being squeezed in all these areas.
    Question. How do you intend to address some of these problems?
    Answer. When Congress passed the Balanced Budget Act of 1997, it 
included several provisions designed to aid certain rural hospitals. 
Payments to certain Medicare-dependent small rural hospitals were 
increased. Many hospitals that had lost their status as Rural Referral 
Centers were reinstated. The Medicare Rural Hospital Flexibility 
Program, providing reasonable cost reimbursement to hospitals 
designated as Critical Access Hospitals, was established. We have done 
all that we can to ensure these provisions specifically targeting rural 
hospitals have been expeditiously implemented. Furthermore, Medicare 
has had a number of provisions in place for some time that are designed 
to give preferential payment treatment to rural hospitals. We are 
confident that these provisions will continue to ensure that rural 
Medicare beneficiaries will have access to quality hospital care into 
the future.
    HCFA estimates an overall decrease in claims volume, the first time 
since the inception of the program more than thirty years ago, of over 
1 percent. You state that this decrease is attributable to 
beneficiaries taking advantage of the Medicare+Choice options offered 
under BBA 97.
    Question. Please explain how you concluded there would be a 
decrease in the number of Medicare beneficiary claims when available 
information indicates that there may not be a large, if any, increase 
in Medicare+Choice enrollees.
    Answer. When HCFA began formulating the fiscal year 2000 
President's budget request in April 1998, we had actual claims data for 
fiscal year 1997 and the first few months of fiscal year 1998. Workload 
analysis at that time showed that claims volumes were still increasing, 
but not by as much as we had previously expected. The volume we 
projected for fiscal year 2000--925 million claims--was a slight 
decrease relative to the fiscal year 1999 President's budget, but it 
reflected what we felt was a statistical trend toward smaller increases 
in the fee-for-service workload.
    This trend has continued. We currently project that the fiscal year 
1999 claims workload will be higher than fiscal year 1998. Consistent 
with this, our fiscal year 2000 estimate represents a moderate increase 
over the volume currently projected for fiscal year 1999. However, both 
the fiscal year 2000 estimate and the fiscal year 1999 current 
projection are lower than they were a year ago in the fiscal year 1999 
President's budget.
    Question. You allude in your budget that as HCFA moves down the 
road of fundamental reform, the Administration will review legislative 
proposals to increase the stability of HCFA's funding. Please explain 
what kind of legislative proposals you are considering.
    Answer. In recent years, HCFA's Program Management budget has 
remained relatively flat, while our legislative and operational 
challenges have continued to increase. Congress began to address this 
last year when HCFA received more than an 8 percent increase in program 
level to fund important activities such as BBA and HIPAA implementation 
and Y2K remediation. HCFA's fiscal year 2000 budget request provides 
for a 6 percent increase over fiscal year 1999, which is necessary to 
meet HCFA's expanding programmatic responsibilities, as well as 
priority base activities. We thank Congress for providing the fiscal 
year 1999 increase, and we look forward to working with Congress to 
ensure that HCFA receives its full budget request for fiscal year 2000.
    HCFA is also engaged in a management reform initiative, highlighted 
in the President's budget, that will help us make the most efficient 
use of our resources and adapt to the changing health care market.
    The Administration will work with the Committee to explore funding 
options. We note that the fiscal year 2000 budget includes user fee 
proposals which would decrease the funding required by annual 
appropriations, and we will be pleased to share additional funding 
proposals once they are more fully developed.
                                 ______
                                 
          Questions Submitted by Senator Kay Bailey Hutchison
    As you may be aware, states that sued the tobacco industry asserted 
in their complaints a wide variety of causes of action, including 
everything from state consumer protection statutes to racketeering, to 
antitrust violations. And while many states did assert direct health 
care costs, including Medicaid costs, in their lawsuits, others did 
not, and still others had their Medicaid claims thrown-out by the 
courts. In any event, virtually none of the settlements, except 
Florida, even mentions Medicaid.
    Question. In light of this, how can you justify the 
Administration's budget submission, which assumes that every single 
dollar recovered by every state as part of their tobacco suit 50 
settlements is directly attributable to Medicaid costs?
    Answer. The Administration believes that Medicaid costs were the 
basis for the States recovery. Regardless of each State's litigation 
against the tobacco companies, all of the States specifically agreed to 
include present and future Medicaid claims in the settlement. The 
Department of Justice has determined that by releasing the tobacco 
companies from all current and future claims in the settlement, the 
States gave up both State and Federal Medicaid claims in exchange for 
the tobacco settlement funds. Tobacco-related Medicaid costs are at 
least $13 billion a year, according to independent estimates, and the 
States are receiving only about $8 billion a year in exchange for 
giving up their claims.
    Current Medicaid law requires HCFA to recoup the Federal share--on 
average 57 percent --of all State third party liability collections, 
including the recent State tobacco settlements. Since the Federal 
government paid a substantial portion of the Medicaid costs that were 
the basis for the State settlements, the Budget assumes the Federal 
government will follow the law and claim its share of the proceeds. 
However, the Administration proposes to work with the States and with 
Congress to enact tobacco legislation that, among other things, 
resolves these Federal claims in exchange for a commitment by the 
States to use tobacco money to support shared State and national 
priorities which reduce youth smoking, promote public health, help 
children, and assist affected rural communities.
    Question. If it is the position of your Department and of this 
Administration that current law entitles the Federal government to 
recoup some of these settlement funds, why was the $18.9 billion not 
included in your budget baseline, i.e., your assumptions of Federal 
revenue under current law?
    Answer. I'm going to have to leave budget scoring to Jack Lew, the 
Director of OMB. My hope as Secretary of HHS is to ensure that the 
Federal share of State tobacco funds are used to support shared State 
and national priorities which reduce youth smoking, protect tobacco 
farmers, improve public health and assist children. Without such 
legislation, States would not have to spend one penny to reduce youth 
smoking.
    Question. If the budget submission assumes that states will somehow 
agree to spend $18.9 billion of their settlement funds to pay for 
programs that are presently the obligation of the Federal government, 
what basis if any do you have to assume that states will agree to such 
an arrangement? (i.e., has any state government indicated to your 
Department that they are willing to assume any Federal obligations in 
exchange for a relinquishment of any Federal claim to tobacco 
settlement funds?)
    Answer. The Administration would support legislation that waives 
Federal recoupment in exchange for States agreeing to use the Federal 
share of to fund shared State/Federal priorities related to reducing 
youth smoking, protecting tobacco farmers, improving public health, and 
assisting children. The Administration does not propose to have States 
assume Federal obligations; we propose for States to use these funds to 
increase their investment in shared State/Federal priorities.
    Question. If the states do not agree to assume $18.9 billion in 
Federal obligations, through what specific mechanism do you plan to 
recoup these state settlement funds, and beginning on what date? Isn't 
in fact the plan to cut Federal Medicaid payments to states in the same 
amount that you feel belongs to the Department?
    Current Medicaid law requires HCFA to recoup the Federal share (on 
average 57 percent) of all State third-party liability collections, 
including the recent State tobacco settlements.
    Since U.S. taxpayers paid a substantial portion of the Medicaid 
costs that were the basis for the State settlements, the Budget assumes 
that the Federal government will follow the law and claim its share of 
the proceeds.
    However, the Administration will work with the States and the 
Congress to enact tobacco legislation that, among other things, 
resolves these Federal claims in exchange for a commitment by the 
States to use tobacco money to support shared State and national 
priorities which reduce youth smoking, promote public health and 
children's programs.
    It is for this reason that the Administration has delayed action on 
claiming the Federal share of the State tobacco settlements until 
fiscal year 2001 so that we can work with the States and Congress over 
the next year on mutually agreeable legislation.
    Question. Since the Administration's position is that the Federal 
government will relinquish any claim to state settlement funds in 
exchange for being able to tell states exactly how to spend those 
funds, what specific programs and in what specific amounts does the 
Administration want states to spend their settlement dollars?
    Answer. The Administration seeks to work with States and the 
Congress. The Administration does not seek legislation that specifies 
exactly how much States should spend on each program. However, the 
Administration believes that every state should spend at least some of 
their tobacco settlement funds on programs to reduce youth smoking, and 
other shared priorities.
    Question. What assurances can you give to states that at the end of 
five years (i.e., after fiscal year 2004), the Federal government will 
help states continue to fund programs at the artificially high levels 
you ask them to, or do you simply expect states to dramatically cut 
these programs once the five-year agreement with the Federal government 
ends?
    Answer. The Administration seeks legislation that, like last year's 
McCain bill, would waive recoupment of the Federal share of all years' 
tobacco payments, not just the next few, so long as states maintain 
their commitment to spend funds on shared Federal and state priorities 
to prevent youth smoking, protect tobacco farmers, improve public 
health, and assist children. As a result, there should not be a 
dramatic change in available resources in fiscal year 2004.
    Question. Since I represent Texas, my immediate concern is for my 
state's roughly $17 billion settlement agreement. Can you tell me, of 
the $18.9 billion your Department plans to seize from the states, how 
much will be seized (recouped) from Texas, and during what years?
    Answer. While the Administration has certain national, aggregate, 
expectations about the likely timing and magnitude of payments the 
Federal government would be required to seek from States under current 
law, it has not subdivided the annual estimates by State. Under current 
law, Texas is required to reimburse the Federal government for its 
share of Medicaid expenses that are reimbursed by third parties, 
including the tobacco companies. While the national average rate is 57 
percent, the Federal government currently pays 62 percent of the cost 
for Texas' Medicaid program.
    Question. What specific legal basis does your Department have for 
seeking recoupment of state tobacco settlement funds? Do you have a 
legal opinion from the Justice Department, the Health Care Financing 
Administration, or other agency to this effect? If so, could you please 
provide the Subcommittee with a copy of any such analyses?
    Answer. Current Medicaid law requires HCFA to recoup the Federal 
share (on average 57 percent) of all State third-party liability 
collections, including the recent State tobacco settlements. Since US 
taxpayers paid a substantial portion of the Medicaid costs that were 
the basis for the State settlements, the Budget assumes that the 
Federal government will follow the law and claim its share of the 
proceeds.
    On November 3, 1997, the Health Care Financing Administration sent 
a letter to the State Medicaid Directors, reminding them of their 
statutory obligation under 1903(d) of the Social Security Act. As 
described in the statute, States must allocate from the amount of any 
Medicaid-related expenditure recovery ``the pro-rata share to which the 
United States (Federal government) is equitably entitled.'' This letter 
is attached for your information, along with the HCFA fact sheet on 
tobacco recoupment.
                                 ______
                                 
            Questions Submitted by Senator Daniel K. Inouye
        child welfare training--american indian/alaskan natives
    In response to Congress' recommendation for the past 2 years that 
$130,000 be available to colleges that enroll American Indian and/or 
Alaskan Natives, the Administration states in its fiscal year 2000 
proposal that 6 grants were awarded in 1998 and that the grants would 
be continued in 1999.
    Question. Who received these grants and what was the exact dollar 
amount of the grants? What is the plan for continuing these grants in 
fiscal year 2000?
    Answer. fiscal year 1998 Section 426 Child Welfare Training Grants. 
In fiscal year 1998, the Department funded six grants for social work 
training to schools that enroll American Indian and/or Alaskan Natives. 
The total amount of funds awarded was $439,950.
    The grantees and the amount of the total individual grants is as 
follows:

        Grantees                                                  Amount
University of Utah, Graduate School of Social Work--Project 
    Title: ``Intermountain Indian Child Welfare Training 
    Partnership''.............................................   $74,906
Arizona State University, School of Social Work--Project 
    Title: ``Traineeship in Professional Social Work Education 
    for American Indians for Practice in Public Child Welfare 
    Agencies''................................................    75,000
University of Alaska-Anchorage, Department of Social Work--
    Project Title: ``Alaska Native/American Indian Tribal/
    Public Child Welfare Traineeships Initiative''............    69,120
University of Maine, School of Social Work--Project Title: 
    ``Social Work Education for Native American Students''....    69,924
Grand Valley State University, School of Social Work--Project 
    Title: ``Social Work Education for Tribal Staff and 
    Potential Staff''.........................................    75,000
University of Washington, School of Social Work--Project 
    Title: ``A Community Development Approach to Training 
    Social Workers for Indian Child Welfare''.................    75,000

    These grants were awarded for a 2-year project period. They will 
receive a continuation grant in fiscal year 1999 funded at the same 
amounts noted above. The fiscal year 2000 budget requests $7 million 
for child welfare training; however, specific priority areas have yet 
to be determined. These grantees will be eligible to compete for these 
funds.
 physician oversight of certified registered nurse anesthetists (crnas)
    Question. What is the status of your proposal to delete the 
requirement for anesthesiologist oversight of CRNAs for Medicare 
reimbursement?
    Answer. The proposed rule was published in the Federal Register on 
December 19, 1997. The proposed rule received approximately 60,000 
comments. More then 20,000 of the comments discussed physician 
supervision of nurse anesthetists. The contents of the final rule are 
still being considered.
               emergency medical care for children (emsc)
    I strongly support the Emergency Medical Care for Children program 
and was concerned by what I saw in the budget report. The President's 
Budget proposal combines EMSC with 3 other programs under the heading 
of Critical Care Programs. Two of these programs, Trauma Care EMS and 
Poison Control Centers, are new programs with no prior funding. The 
budget proposal recommends specific funding for each of the four 
programs, with EMSC receiving $15,000,000. I am concerned that if the 
full request of $22,500,000 is not appropriated, funding for the other 
programs will be at the expense of the EMSC program.
    Question. How will HRSA ensure EMCS receives the recommended 
$15,000,000 appropriation?
    Answer. While it is proposed that all four programs be included in 
an administrative cluster, organized under and directed from within a 
single branch within HRSA's Maternal and Child Health Bureau, the 
request for funding does not include a consolidation of existing 
program authorities. As such, funding would go to each program as 
appropriated and would not be diverted to other programs without the 
consent of the Appropriations Committees.
                    native hawaiian health care/hui
    Question. In the fiscal year 2000 budget proposal, you indicate 
that the 1997 Hawaiian HUI proposal recommended by the Administration 
for New Start funding was not accepted due to a lack of organizational 
readiness to begin providing services. What specific weaknesses were 
identified, and what technical assistance has been provided to the HUI 
project to ensure they have a competitive application for the upcoming 
grant cycle?
    Answer. The HUI proposal submitted in the 1997 Health Center new 
Start/Expansion grant application cycle was not selected because of 
lack of readiness. The HUI proposal was to support an integrated 
delivery system of Health Centers with an administrative support 
organization to receive the grant funds. At the time of application, 
the development of the network was still in the planning stages and 
would not be ready to receive funds and be operational within the 
required time frame. The network corporate structure and organizational 
relationships had not been defined and would not be ready prior to time 
funding decision were to be made. Recognizing the value of the proposed 
integrated delivery system, HRSA provided funds to the Hawaii Primary 
Care Association to provide ongoing technical assistance in developing 
the corporate relationship between the Health Centers making up the HUI 
and to develop the integrated network in order for these organizations 
to be competitive in the fiscal year 1999 Health Center new start/
expansion grant application cycle.
                     National Institutes of Health

STATEMENT OF HAROLD E. VARMUS, M.D., DIRECTOR
ACCOMPANIED BY:
        RUTH KIRSCHSTEIN, M.D., DEPUTY DIRECTOR, NATIONAL INSTITUTES OF 
            HEALTH
        RICHARD KLAUSNER, M.D., DIRECTOR, NATIONAL CANCER INSTITUTE
        CLAUDE LENFANT, M.D., DIRECTOR, NATIONAL HEART, LUNG, AND BLOOD 
            INSTITUTE
        HAROLD SLAVKIN, D.D.S., DIRECTOR, NATIONAL INSTITUTE OF DENTAL 
            AND CRANIOFACIAL RESEARCH
        PHILLIP GORDEN, M.D., NATIONAL INSTITUTE OF DIABETES AND 
            DIGESTIVE AND KIDNEY DISEASES
        GERALD FISCHBACH, M.D., DIRECTOR, NATIONAL INSTITUTE OF 
            NEUROLOGICAL DISORDERS AND STROKE
        ANTHONY S. FAUCI, M.D., DIRECTOR, NATIONAL INSTITUTE OF ALLERGY 
            AND INFECTIOUS DISEASES
        MARVIN CASSMAN, Ph.D., DIRECTOR, NATIONAL INSTITUTE OF GENERAL 
            MEDICAL SCIENCES
        DUANE ALEXANDER, M.D., DIRECTOR, NATIONAL INSTITUTE OF CHILD 
            HEALTH AND HUMAN DEVELOPMENT
        CARL KUPFER, M.D., DIRECTOR, NATIONAL EYE INSTITUTE
        KENNETH OLDEN, Ph.D., DIRECTOR, NATIONAL INSTITUTE OF 
            ENVIRONMENTAL HEALTH SCIENCES
        RICHARD J. HODES, M.D., DIRECTOR, NATIONAL INSTITUTE ON AGING
        STEPHEN I. KATZ, Ph.D., DIRECTOR, NATIONAL INSTITUTE OF 
            ARTHRITIS AND MUSCULOSKELETAL AND SKIN DISEASES
        JAMES F. BATTEY, M.D., Ph.D., DIRECTOR, NATIONAL INSTITUTE ON 
            DEAFNESS AND OTHER COMMUNICATION DISORDERS
        STEVEN E. HYMAN, M.D., DIRECTOR, NATIONAL INSTITUTE OF MENTAL 
            HEALTH
        ALAN I. LESHNER, Ph.D., DIRECTOR, NATIONAL INSTITUTE ON DRUG 
            ABUSE
        ENOCH GORDIS, M.D., DIRECTOR, NATIONAL INSTITUTE ON ALCOHOL 
            ABUSE AND ALCOHOLISM
        PATRICIA A. GRADY, Ph.D., R.N., DIRECTOR, NATIONAL INSTITUTE OF 
            NURSING RESEARCH
        FRANCIS S. COLLINS, M.D., Ph.D., DIRECTOR, NATIONAL HUMAN 
            GENOME RESEARCH INSTITUTE
        JUDITH L. VAITUKAITIS, M.D., DIRECTOR, NATIONAL CENTER FOR 
            RESEARCH RESOURCES
        WILLIAM HARLAN, M.D., ACTING DIRECTOR, NATIONAL CENTER FOR 
            COMPLEMENTARY AND ALTERNATIVE MEDICINE
        GERALD KEUSCH, M.D., DIRECTOR, FOGARTY INTERNATIONAL CENTER
        DONALD A. B. LINDBERG, M.D., DIRECTOR, NATIONAL LIBRARY OF 
            MEDICINE
        NEAL NATHANSON, M.D., DIRECTOR, OFFICE OF AIDS RESEARCH
        DENNIS P. WILLIAMS, DEPUTY ASSISTANT SECRETARY, BUDGET, 
            DEPARTMENT OF HEALTH AND HUMAN SERVICES

                              introduction

    Senator Specter. We will now turn to the distinguished 
panel from the National Institutes of Health. In the interest 
of time, we are going to move right ahead. Dr. Varmus has 
brought his own name tag up.
    The National Institutes of Health has been, as I say with 
some frequency, the crown jewel of the Federal Government. I 
also add, perhaps the only jewel of the Federal Government 
sometimes.
    I note on the budget request which had been submitted by 
the National Institutes of Health, and I have pressed Dr. 
Varmus on this in the past--the request of the NIH before the 
Office of Management and Budget went to work on it was $19.3 
billion, which would be a very substantial increase over the 
$15.6 billion that we have at the present time. With the 
achievements at NIH, it has been the view of the Congress, with 
the initial work being done by the counterpart with Chairman 
Porter and ranking member Obey on the House side and Senator 
Harkin and myself on the Senate side back in the subcommittee 
and the full committee and the Senate and the House, to really 
find the funding for the National Institutes of Health.

                  prepared statement of senator harkin

    So we welcome you here, Dr. Varmus, with a very 
distinguished array of scientists, and note the recent 
achievements on cancer and on the stem cells, and look forward 
to your testimony.
    Senator Harkin. Senator Specter I ask that my prepared 
statement be inserted into the record.
    Senator Specter. Your statement will be inserted into the 
record at this point.
    [The statement follows:]

                Prepared Statement of Senator Tom Harkin

    I want to welcome Dr. Varmus and his colleagues from NIH 
today. NIH is the premier medical research institution in the 
world. The research it funds is key to maintaining the quality 
of our health care and key to finding preventive measures, 
cures and the most cost effective treatments for the major 
illnesses and conditions that strike Americans.
    But I must say that I am disappointed in the President's 
budget request for NIH. Last year, this subcommittee was able 
to secure a $2 billion increase for NIH--setting a course to 
double NIH funding over five years. The Administration's 
request for fiscal year 2000 is extremely short sighted when it 
comes to support for finding cures, more cost effective 
treatment and preventions for the many diseases and 
disabilities that hit millions of Americans every year. I hope 
to work closely with Senator Specter this year to build on last 
year's increase for NIH as we move to doubling funding for NIH 
over a five-year period.
    One, but certainly not the only, reason that we must 
continue this support for medical research at NIH is the truly 
awe-inspiring potential benefits of stem cell research. Our 
Chairman has now held three hearings on the issues surrounding 
stem cell research. At those hearings, I have had the 
opportunity to express my support for this research and my 
concurrence with the opinion of the HHS General Counsel that 
research using stem cells is eligible for federal funding. Now 
it is time to move forward. Dr. Varmus, I expect that you will 
keep me updated on how you intend to encourage and support 
quality, ethically-sound research in this area over the coming 
months.
    Thank you, Mr. Chairman--I look forward to hearing from our 
witnesses.

                 summary statement of dr. harold varmus

    Dr. Varmus. Thank you, Mr. Specter. I will be extremely 
brief in view of the time. I am here representing the NIH for 
the sixth time and pleased to be doing so.
    The President is requesting $15.933 billion, an increase of 
$320 million over our appropriated funds for 1999. This request 
builds on last year's extraordinary $2 billion increase, a 15 
percent increase, and keeps us just ahead, as the Secretary 
mentioned, of the President's 5-year plan to increase the 
budget of the NIH by 50 percent over 5 years.
    Because time is so short, indeed shorter than we had 
anticipated, my statement and those of the Institute directors 
arrayed behind me will be submitted for the record. In those 
statements you will see the recounting of many recent successes 
in the war that NIH is waging against disease: the success we 
have had in gathering intelligence about biological systems and 
about how those systems fail, and the success we have had in 
testing strategies to combat the enemy in the battlefield.
    The most frequent question that we have been asked in this 
budget season is the simple one: How are we managing the $2 
billion of increased funding that we received in fiscal year 
1999? In order to expedite that discussion, the Institutes and 
the central NIH have provided the committee with a 
comprehensive analysis--that you all have received--that 
displays the many new initiatives that we have undertaken in 
fiscal year 1999, initiatives that are aligned in these 
documents according to spending mechanism.
    As you leaf through these documents, you will see a highly 
varied research program that exploits new advances in genetics 
and biochemistry, imaging technology, and many other 
disciplines. You will read about new means for training 
investigators and encouraging them to participate in biomedical 
sciences, including clinical scientists and those who represent 
computer science and engineering and chemistry and many other 
allied disciplines that contribute so much to the biomedical 
research effort.
    Finally, you will see many efforts to address the major 
threats to the health of our own citizens and to people 
throughout the world.

                           prepared statement

    We have been able to initiate so many programs in fiscal 
year 1999 because of the powerful start that this committee and 
your counterparts in the House and the administration have 
allowed us to make to the goal of increasing the NIH budget by 
50 percent over 5 years. We will continue all of these programs 
in fiscal year 2000, and by using a conservative financial 
management scheme we will be able to begin even more programs, 
as outlined in our Congressional justification.
    Mr. Chairman, my colleagues and I look forward to 
discussing these many new activities with you today and we will 
be pleased to answer any questions you may have.
    [The statement follows:]
                Prepared Statement of Dr. Harold Varmus
    Mr. Chairman and Members of the Committee: I am pleased to present 
the President's budget request for the Buildings and Facilities (B&F) 
Program. The President in his fiscal year 2000 budget has proposed that 
the B&F receive $148.4 million, a decrease of $43 million from the 
comparable fiscal year 1999 appropriation. This includes $40 million 
forward funding in the fiscal year 1999 appropriations act to complete 
funding for the Mark O. Hatfield Clinical Research Center.
                      role in the research mission
    The B&F appropriation funds the design, construction, improvement, 
and major repair of the facilities in which the NIH conducts medical 
research and administers nationwide research programs that seek to 
improve the Nation's health. The appropriation supports the design and 
construction of new facilities for NIH research programs and the 
continuing renovation, alteration, and repair of existing facilities.
    The B&F portfolio of research, administration, and associated 
facilities and the physical infrastructure that supports them are 
critical to the success of NIH's mission. Requisite facilities, 
properly sized, configured, equipped, and serviced enable NIH staff to 
work efficiently and productively. Conversely, a misfit between the 
state of a facility and the needs of its occupants can create costly 
barriers including loss of productivity and health and safety risks.
                              master plan
    The NIH is moving forward with a new blueprint to guide future 
development on the campus. The updated master plan that was approved by 
the National Capital Planning Commission (NCPC) in February 1996 for 
the Bethesda campus identifies programmatic requirements in terms of 
personnel and physical facilities; establishes concepts for future 
development and land use, buildings, utilities, open space, circulation 
and traffic management for the next twenty years; and illustrates how 
needs for laboratory and clinical research, administrative, and support 
space can be accommodated. An updated Master Plan for the NIH Animal 
Center in Poolesville was completed in the fall of 1996.
    The master plan is the guiding beacon as the NIH maintains its 
forward pace in the midst of a sorely needed major facility improvement 
program. The center piece of this program is the new Mark O. Hatfield 
Clinical Research Center (CRC) now under construction. When completed, 
this combined hospital and clinical research facility will replace the 
40-year-old, outmoded and deteriorated patient care wards and research 
space with state-of-the-science facilities designed and built to 
support medical research into the new century.
    The Mark O. Hatfield Clinical Research Center is only part of the 
facility improvement story. Most of the NIH research facilities across 
the nation are, like the facilities the new Clinical Research Center is 
replacing, old, outmoded, and poorly suited to the demands of modern 
medical research. They lack the appropriate layout, types of electrical 
service, laboratory gases, telecommunications, and environmental 
controls needed today. Moreover, many of the facilities were built 
before the adoption of model building codes. Some lack fire suppression 
systems and other life safety systems now considered essential. Others 
contain asbestos, insufficient heating ventilation and air 
conditioning, and architectural barriers for the disabled.
    Through a carefully planned and effectively managed B&F Program, 
the NIH is addressing these conditions at each of its sites. On the 
Bethesda campus, the improvement program includes replacement and some 
new research buildings and renovations to existing laboratory and 
administrative facilities. At the NIH Animal Center, the improvements 
are targeted toward increasing the research capacity of the center by 
modernizing and increasing the capacity and reliability of the utility 
systems and by adding laboratory animal facilities with sufficient 
procedure areas to support present and future animal models. At the 
National Institute of Environmental Health Sciences, Research Triangle 
Park, North Carolina, minor improvements are needed in the immediate 
future. In the past five fiscal years, the B&F Program has supported 
improvements at the Rocky Mountain Laboratory, Hamilton, Montana. This 
includes safety and reliability upgrades to existing infrastructure and 
utilities systems, as well as funds to construct a new laboratory 
facility to provide biosafety level 3 containment space for the conduct 
of multi-drug resistant tuberculosis research. At the Caribbean Primate 
Research Center, Sabana Seca, Puerto Rico, the budget request includes 
funds to perform an environmental audit related to the closure of an 
inactive sewer system.
               mark o. hatfield clinical research center
    The Mark O. Hatfield Clinical Research Center is an addition to the 
existing Warren G. Magnuson Clinical Center Complex and will house the 
clinical research program of the NIH. The NIH places the highest 
priority on the renewal of the hospital portion of the existing 
Clinical Center Complex. In addition to patient-related research, the 
existing Clinical Center Complex contains approximately 40 percent of 
the research space on the Bethesda campus and is the keystone of the 
NIH Intramural Research Program. The initial and critical phase in the 
renewal of this valuable resource is the Mark O. Hatfield Clinical 
Research Center (CRC). The new facility will contain patient care, 
treatment, and clinical research facilities. These new facilities 
replace existing laboratories, patient wards, and support facilities 
that have deteriorated from overuse and are not adequately serviced to 
meet current research requirements. The CRC will be the heart of the 
NIH Intramural Research Program, as the original Clinical Center 
Complex is now.
    The state-of-the-art research hospital with 250 beds, allied 
clinical facilities, and adjacent research laboratories for work that 
is closely intertwined with patient research activities, will be 
located to the North of the existing Building 10 complex and ambulatory 
care research building. The research hospital will be approximately 
610,000 square feet and will be served by an additional 250,000 square 
feet of new space dedicated to laboratory and program support.
    The CRC project is scheduled to be completed in 2002. To meet this 
aggressive schedule, the CRC is currently being fast-tracked, i.e., the 
construction will start while the design is being developed. Site 
preparation work for the CRC began in September 1997 and is nearing 
completion. It includes demolition of existing structures on the 
project site; modification of the existing south entrance to the 
Clinical Center to facilitate construction of the new CRC on the north 
side of the Clinical Center; relocation of utilities; and realigning 
Center Drive, the principal roadway on the NIH campus. In the next 
year, significant progress will be made: the design will be fully 
completed; the excavation and the building foundation will be 
substantially completed; and construction of the building structure 
will be underway. To maintain the CRC on schedule and within budget, a 
cost and schedule containment program has been developed and 
implemented. This includes a formal value engineering analysis, reviews 
by outside experts, and the development of a project cost schedule.
                            central vivarium
    Studies in the NIH master plan document the need for new 
replacement research facilities on the site of the present day central 
animal facilities, which is outmoded, expensive to maintain, and 
inadequate to sustain modern animal research. In order to meet the need 
for improved, expanded animal facilities, a new central vivarium is 
planned. The fiscal year 2000 request will initiate the design of a 
multi-level animal facility to consolidate ongoing programs in the 
sprawling and aging Building 14 and 28 complex, as well as to meet the 
research needs for emerging animal models, including non-mammalian 
models, with a modern and compact structure housing common functions. 
The new facility will meet the majority of the needs of the NIH 
intramural program on the NIH Bethesda campus primarily in one 
centralized location. This crucial project will support animal research 
and is an integral component of a major objective of NIH's Master Plan 
to better utilize its land by creating available space for the 
construction of other potential facilities in the future.
                essential safety and health improvements
    The NIH continues to place a high priority on safety and health 
requirements necessary to meet critical infrastructure and 
environmental improvements to existing facilities to comply with safety 
and health regulations and support ongoing research programs. As 
buildings age and health and safety guidelines and regulations change, 
renovations and upgrades are necessary to ensure the safety and health 
of the building's occupants. The projects within the Essential Safety 
and Health Improvement initiatives address these issues. Without the 
improvements funded by this portion of the Buildings and Facilities 
appropriation, the NIH eventually would not be able to continue to 
safely use many of its older facilities. Valuable research capacity 
would be lost, laboratories would have to be shut down, animal 
facilities closed, and research activity curtailed. Therefore the 
projects funded by this portion of the appropriation are vital in order 
for the NIH to continue to use virtually all the buildings on the main 
campus; NIHAC; and facilities in Frederick; Baltimore; Hamilton, 
Montana; and other satellite locations.
    The fiscal year 2000 request for the Essential Safety and Health 
Improvements initiatives includes: the continued phased removal of 
asbestos-containing materials from various NIH buildings; the 
implementation of the plan to correct fire and life safety deficiencies 
in NIH buildings on the campus and at the NIH Animal Center; the 
construction of the upgrade of the utility infrastructure at the NIH 
Animal Center, Poolesville; the ongoing rehabilitation of NIH animal 
research facilities; and continuation of the environmental assessments/
remediation program. All of these projects are driven by federal and 
local regulations, policies and national accreditation requirements.
                     repair and improvement program
    The Repair and Improvement (R&I) program supports major repairs, 
maintenance and improvements to the physical plant that supports the 
main NIH campus in Bethesda, as well as to field stations that are the 
responsibility of the NIH. The goal of the R&I program is to sustain 
efficient and effective facility performance throughout the life cycle 
of the facility to meet ongoing requirements of the NIH research 
mission. The costs for some of the projects are recurring and 
substantial. For example, roofs, roads, structures and building and 
underground utilities require regularly scheduled repairs, ad hoc 
repairs and maintenance to preserve or achieve reliable and safe 
conditions. For other projects, the costs are largely one-time, often 
unpredictable expenditures for major items of equipment requiring 
emergency repair or replacement such as transformers, chillers, and 
cooling towers.
                    renovations and system upgrades
    The fiscal year 2000 B&F request also provides funds for the 
Building 10 Transition Program which support modifications within the 
existing Clinical Center Complex to provide effective integration of 
the new addition and the remaining diagnostic, treatment, support, and 
research areas housed in the existing building. In addition, the NIH 
needs to construct an additional electrical substation and upgrade the 
existing west substation in order to support the new CRC as well as 
other new facilities coming on line.
                    fiscal year 2000 budget summary
    The fiscal year 2000 request for Buildings and Facilities is $148.4 
million. This amount includes $40 million appropriated in Public Law 
105-277 for the Mark O. Hatfield Clinical Research Center, the fourth 
and final funding increment to complete construction. The B&F request 
totals $30.5 million for essential safety and health improvements 
composed of $3.5 million for the phased removal of asbestos from NIH 
buildings; $5 million for the continuing upgrade of fire and life 
safety deficiencies of NIH buildings; $16 million for the upgrade of 
the utility infrastructure at the NIH Animal Center, Poolesville; $5 
million for the continued support of the rehabilitation of animal 
research facilities; and $1 million to continue the program of 
environmental assessments and remediation. In addition to the essential 
safety and health improvements, the fiscal year 2000 request includes: 
$10 million to initiate the design of the Central Vivarium; $7.2 
million for the Building 10 transition program; and $10 million for the 
construction/upgrade of electrical substations. The fiscal year 2000 
request also includes $50.7 million for the continuing program of 
repairs, improvements, and maintenance that is the true keystone of the 
B&F program.
             government performance and results act (gpra)
    The activities of the B&F Program are covered within the NIH-wide 
Annual Performance Plan required under the Government Performance and 
Results Act (GPRA). The fiscal year 2000 performance goals and measures 
for NIH are detailed in this performance plan and are linked to both 
the budget and the HHS GPRA Strategic Plan which was transmitted to 
Congress on September 30, 1997. NIH's performance targets in the Plan 
are partially a function of resource levels requested in the 
President's Budget and could change based upon final Congressional 
Appropriations action. NIH looks forward to Congress' feedback on the 
usefulness of its Performance Plan, as well as to working with Congress 
on achieving the NIH goals laid out in this Plan.
                                 ______
                                 
             Prepared Statement of Dr. Ruth L. Kirschstein
    Mr. Chairman, Members of the Committee: We are pleased to be here 
today to discuss the fiscal year 2000 budget request for the Office of 
the Director (OD). As you know, the OD provides leadership and 
coordination in the areas of policy and management related to the 
research activities of NIH, both extramural and intramural. In 
addition, the OD is responsible for a number of special programs, 
established within its purview, and for leadership and management of 
centralized support services and functions essential to the operations 
of the entire NIH.
    The President in his fiscal year 2000 budget has proposed that the 
OD receive $218.2 million, an increase of $5.1 million over the 
comparable portion of the fiscal year 1999 appropriation. Including the 
estimated allocation for AIDS in both years, total support proposed for 
the OD is $262.7 million, an increase of $6.2 million over the fiscal 
year 1999 appropriation. Funds for OD efforts in AIDS research are 
included within the Office of AIDS Research budget request.
    The NIH, comprising some 24 Institutes and Centers, (or ICs), 
conducts a vast program of medical research and training designed to 
advance medical knowledge and to sustain the Nation's medical research 
capacity. Attainment of these goals results in improved health for all 
Americans, enhancing the quality of life for our citizens, and 
benefitting the Nation's economy.
    As has been expressed throughout these hearings, NIH is in a unique 
position to address public health needs and pursue promising scientific 
opportunities in the prevention, diagnosis, and treatment of disease. 
The OD mission is to provide the means--the leadership and 
administrative and management activities--whereby the specific research 
ICs can conduct their activities in the core program areas of research, 
research training and career development, and the support of research 
facilities. The OD provides a structure and framework for the conduct 
of the activities of the ICs in a manner that is responsive to 
promising research opportunities and technologies, yet addresses public 
health needs. Specifically, the OD guides and supports research by 
setting priorities; allocating funding among these priorities; 
developing policies based on scientific opportunities and ethical and 
legal considerations; maintaining peer review processes; providing 
oversight of grant and contract award functions and of intramural 
research; communicating health information to the public; facilitating 
the transfer of technology to the private sector; and providing 
fundamental management and administrative services such as financial 
accounting and personnel, property, and procurement management, 
administration of equal employment practices, and plant management 
services, including environmental and public safety regulations of 
facilities. The principal OD offices providing these activities include 
the Office of Extramural Research (OER), the Office of Intramural 
Research (OIR), and the Offices of: Science Policy, Communications, 
Legislative Policy and Analysis, Equal Opportunity, and Management. 
This request contains funds to support the functions of these offices.
    To further influence research activities and to address targeted 
public health needs and specific components of medical research, the OD 
maintains several trans-NIH offices and programs that focus on a 
particular aspect of research and foster and encourage research in that 
particular area. These OD offices address a variety of health needs and 
research areas, including programs to coordinate prevention activities 
in the ICs and to improve the health of women and minority populations; 
activities to examine the use of dietary supplements; research related 
to social and behavioral patterns in the maintenance of health; and 
efforts to promote research on rare diseases. I will now discuss the 
budget requests of these trans-NIH offices in greater detail.
    It should be noted that, as enacted by legislation for fiscal year 
1999, research related to complementary and alternative medicine, 
previously supported in the OD, is now being undertaken by the newly 
established National Center for Complementary and Alternative Medicine 
(NCCAM).
    The budget requests of the remaining trans-NIH offices are 
presented below.
 the office of research on minority health and the nih minority health 
                               initiative
    Minorities at all stages of life suffer poorer health and higher 
rates of premature death than do non-minority populations. The Office 
of Research on Minority Health (ORMH) was established to address these 
health disparities and to promote medical research aimed at improving 
the health status of minority populations throughout their lifespan. 
The Office also supports programs to expand the ability of minority 
scientists to participate in all aspects of medical research. As such, 
the budget request supports numerous collaborative activities with the 
ICs in the areas of research, research training and career development. 
Specifically, ORMH will support research activities by providing grant 
supplements for research on diseases that disproportionately affect 
minorities in the U.S., such as lupus, asthma, and hypertension, and, 
in developing countries, such as malaria, tuberculosis and AIDS.
    The Minority Health Initiative (MHI) is a comprehensive program 
with a focus on developing and testing interventions that will reduce 
the disproportionate burden of disease among minority populations and 
developing successful strategies to promote health behaviors across the 
life span. Collaboration with the ICs focuses on research training, 
across the educational pipeline, to ensure the appropriate 
representation of minorities in health research related careers. MHI 
sponsors specific projects to develop therapies for sickle cell 
disease, to develop prevention and control strategies for prostate 
cancer, to address diabetes among Hispanics and Native Americans, to 
treat hypertension among Asian and African Americans, and to support 
initiatives to decrease injury and death due to violence in minority 
youth, reduce unintended pregnancy in minority women, and support 
initiatives to reduce infant mortality in inner city populations.
    Research training programs include the Bridges to the Future 
program, the Minority International Research Training (MIRT) program, 
and the Comprehensive Partnerships for Mathematics and Science 
Achievement (CPMSA) program. Through the ORMH, NIH stimulates and 
fosters minority research activities among the ICs, and is evaluating 
these activities, through review by the Advisory Committee on Research 
on Minority Health which met twice during the fiscal year 1998-1999 
period. Presently the committee is engaged in the development of a 
comprehensive strategic plan for minority research and training which 
it intends to submit to the NIH Director at the end of fiscal year 
1999.
                    the office of disease prevention
    Within the OD, the Office of Disease Prevention (ODP) has several 
specific programs that strive to place new emphasis on the prevention 
and treatment of disease.
    The Office of Dietary Supplements (ODS) stimulates research on the 
use of dietary supplements, to benefit health and prevent disease. 
During fiscal year 2000, the ODS will continue to develop the Botanical 
Centers Initiative. In fiscal year 1999 a Request for Applications was 
issued. It is expected that funds for this activity will be awarded in 
fiscal year 1999. The purpose of the initiative is to foster 
interdisciplinary research to evaluate the health effects of 
botanicals. The ODS will continue to support investigator initiated 
studies through Research Enhancement Awards Program (REAP) awards and 
joint program announcements with the ICs. These address areas such as 
thiamine deficiency, use of vanadium salts and anti-folates; and 
protocols that investigate the effect of dietary supplements on 
antibiotic-induced hearing loss and loss of bone density in athletes. 
ODS will continue public-oriented information pages on specific dietary 
and botanical supplements. Finally, the ODS will continue to conduct 
conferences and workshops to encourage new research initiatives in this 
field.
    To address unrecognized public health needs, the Office of Rare 
Diseases develops and disseminates information on rare diseases and 
conditions and forges links between investigators having ongoing 
research activities in this area. The ORD supports workshops and 
symposia to stimulate research interest and to identify research 
opportunities related to rare diseases. These workshops have resulted 
in a determination of research priorities, the development of research 
protocols, and criteria for diagnosing and monitoring rare disorders 
such as head and neck cancers, AIDS related malignancies, sleep 
control, hereditary ataxias, and unusual palsies and dysplasias. In 
fiscal year 2000, the ORD, with the National Human Genome Research 
Institute (NHGRI), will support an information center to respond to the 
numerous requests for information about rare and genetic disorders. In 
addition, the ORD, with the NIH ICs and the FDA Center for Biologies 
Evaluation and Research (CBER) will continue to pursue its initiative 
to develop gene therapies for rare monogenic diseases.
     the office of behavioral and social sciences research (obssr)
    Many of our most serious health concerns are related to behaviors. 
Recognizing this, the Office of Behavioral and Social Sciences Research 
(OBSSR) was established to address the role of behavior and social 
factors in the prevention and management of disease. The OBSSR 
increases the scope of, and support for, behavioral and social science 
across all of NIH. The office develops initiatives to stimulate 
research in these areas and to ensure that findings from this research 
are disseminated to the public.
    In conjunction with the NIH ICs, the OBSSR is focusing on three 
trans-NIH initiatives: Innovative Approaches to Disease Prevention 
through Behavior Change; Educational Workshops on Interdisciplinary 
Research; and the Mind/Body Research Initiative. The Behavior Change 
Initiative encourages the study of innovative behavioral interventions 
that address risk factors such as tobacco use, lack of exercise, 
improper diet and alcohol abuse. The Interdisciplinary Workshops 
Initiative builds on previous successful efforts and is designed to 
introduce young investigators in one discipline to the concepts and 
methods of another discipline with a goal of facilitating 
interdisciplinary research collaborations that cross sociobehavioral 
and biomedical studies.
    The Mind/Body Initiative has been developed in response to 
Congressional concern about the impact of stress on numerous medical 
conditions, and will establish centers that will foster mind/body 
approaches to health. Basic research as well as clinical applications 
will be supported and will focus on three areas: (1) the influence of 
beliefs, attitudes, and values on physical health; (2) the determinants 
or antecedents of health-related beliefs, attitudes, or values; (3) and 
stress management approaches to disease treatment and prevention. The 
OBSSR and 12 NIH ICs, are co-sponsoring this initiative utilizing 
specialized center awards. Applications have been solicited under an 
RFA and are to be submitted for review by April of 1999.
                the office of research on women's health
    The Office of Research on Women's Health (ORWH), is the focal point 
for women's health research at NIH and strives to ensure that research 
supported by NIH addresses health concerns of women, that women are 
appropriately included as subjects in research protocols and clinical 
trials, and that women are encouraged to pursue careers in medical 
research. The Office has revised its science-based agenda, Research on 
Women's Health for the 21st Century, based on a series of public 
hearings and scientific workshops. ORWH will use its funds to 
stimulate, initiate, and expand women's health research by supporting 
research grants, RFAs, Program Announcements, and Research Enhancement 
Awards in the priority areas identified by this report. In fiscal year 
2000, ORWH will implement selected research initiatives and programs 
including an initiative on the molecular/genetic and physiological 
bases for sex differences related to health and disease; research on 
renal and urogynecologic disorders; and gastrointestinal and digestive 
diseases. Additional research efforts will be focused on: allergic, 
immune and autoimmune diseases such as lupus, arthritis and chronic 
pain, heart disease, alcohol and drug use, reproductive health and 
prevention of diabetes. The ORWH will also continue to develop and 
implement programs to advance the careers of women in science and to 
provide opportunities to increase the number of young investigators in 
multidiciplinary basic and clinical research related to women's health.
                          other od activities
    The OD also supports a number of additional NIH programs that 
promote scientific research and enhance research career development.
    The Office of Extramural Research (OER) coordinates the Academic 
Research Enhancement Award (AREA) program that provides grants to 
institutions that award degrees in health sciences but are not major 
recipients of NIH grant funds. These awards enable college students to 
participate in research projects and encourages them to pursue careers 
in medical research. OER also sponsors the Extramural Associates 
Research Development Award (EARDA) program that provides competitively 
awarded grants to institutions that have a significant enrollment of 
underrepresented minority students who, with their faculty, participate 
in medical research programs. The grants are designed to provide 
faculty at these institutions with skills needed to become more 
competitive in obtaining Federally sponsored research funds.
    The NIH, through the Office of Intramural Research (OIR), maintains 
loan repayment and scholarship programs as important instruments for 
recruiting high quality candidates in basic and clinical research 
positions. The request contains funds for the NIH Clinical Research 
Loan Repayment Program and the Undergraduate Scholarship Program, both 
for individuals from disadvantaged backgrounds; and for the Loan 
Repayment Program for General Research. Each program provides for the 
payment of educational costs in return for specific commitments of 
service in NIH's intramural research facilities.
    The Office of Science Policy coordinates several science education 
activities that benefit both students and teachers and encourage 
students to consider careers in research. Further, through OSP, the NIH 
will expand its role in addressing science policy issues related to 
ethical concerns by coordinating the enhanced functions of the NIH 
Recombinant DNA Advisory Committee, and the activities of the 
Secretary's Advisory Committee on Genetic Testing and the Secretary's 
Advisory Committee on Xenotransplantation.
    The request also includes funds for a Discretionary Fund to permit 
the Director to respond to new and emerging high priority research 
opportunities such as vaccine study, gene mapping and imaging.
                        management improvements
    Striving to maximize administrative effectiveness, NIH is 
continuing efforts to implement the recommendations of the 
comprehensive study of administrative practices and costs undertaken at 
the request of the Subcommittee. These endeavors are expected to 
enhance the overall efficiency and effectiveness of the agency's 
business operations, in order to ensure that NIH's first-rate research 
enterprise is supported by exemplary administration. The Director of 
NIH has appointed an Implementation Oversight Committee (IOC) to 
monitor implementation and make recommendations to him. This Committee 
is co-chaired by the Director, National Institute of Dental and 
Craniofacial Research and the NIH Deputy Director for Management (DDM) 
and includes representatives of the Executive Officer, Intramural 
Research and Administrative Officer communities within the ICs. 
Particular emphasis is being given to high priority areas such as 
accounts payable, property management, procurement, personnel 
delegations, and information technology management.
    The activities of the OD are covered within the NIH-wide Annual 
Performance Plan required under the Government Performance and Results 
Act (GPRA). The fiscal year 2000 performance goals and measures for NIH 
are detailed in this performance plan and are linked to both the budget 
and the HHS GPRA Strategic Plan which was transmitted to Congress on 
September 30, 1997. NIH's performance targets in the Plan are partially 
a function of resource levels requested in the President's Budget and 
could change based upon final Congressional Appropriations action. NIH 
looks forward to Congress' feedback on the usefulness of its 
Performance Plan, as well as to working with Congress on achieving the 
NIH goals laid out in this Plan.
    The fiscal year 2000 budget request for the Office of the Director 
is $218.2 million.
                                 ______
                                 
             Prepared Statement of Dr. Richard D. Klausner
    Mr. Chairman and Members of the Committee: This has been a year of 
real progress in cancer research. For the past three years in appearing 
before you, I have emphasized the dramatic changes in the science and 
technology of cancer research, changes that we at the National Cancer 
Institute (NCI) are fostering and facilitating. We are all convinced 
that these changes can and will be applied to reducing the burden of 
cancer and that they will accelerate the continuing reduction in cancer 
incidence and mortality that we first reported two years ago.
              advances in cancer treatment and prevention
    This year, I would like to illustrate some of the tangible advances 
made just over the past year in the prevention and treatment of 
specific cancers. Of course, this only represents a fraction of what we 
do in order to understand the causes and nature of cancer. It is 
fitting to report on clinical trials results in this, the 50th 
anniversary of the introduction of the modern, randomized controlled 
trial. In many ways, these trials are the culmination of the research 
pipeline. They establish the real value of innovation and change the 
practice of medicine to benefit people with or at risk for cancer. Let 
me highlight a few examples which illustrate several important themes. 
First, we are beginning to approach the prevention of cancer in 
addition to its treatment. Second, we are continuously optimizing even 
our conventional therapies in order to improve patient outcome. Third, 
we are beginning to tailor therapy to more precise diagnostic 
categories of cancer, which is made possible by a new age of molecular 
diagnostics. Fourth, we have begun to test novel therapies targeting 
the molecular machinery of cancer, heralding the future of cancer 
prevention and treatment.
    This year, we reported the successful results of the first major 
cancer prevention trial carried out by one of the NCI-funded clinical 
trials group, NSABP. It is an example of a mechanism-based intervention 
aimed at preventing this common cancer. By treating women who have 
elevated risk for breast cancer with a partial estrogen antagonist, 
tamoxifen, a 50-percent reduction in incidence of breast cancer was 
observed over the course of the study. There was a 70 percent reduction 
in breast cancer incidence for those breast cancers expressing estrogen 
receptors, whereas there was no change in incidence of breast cancers 
that lacked this receptor which is the molecular target for the drug. 
This study showed that we can reduce the risk of breast cancer. Much 
remains to be studied and tamoxifen is far from perfect in terms of its 
effectiveness and its side effects. It is, however, an important and 
landmark beginning.
    The optimization of existing therapies continues to be an important 
approach to improving the outcome for cancer patients. Years of 
clinical trials to optimize chemotherapy regimens for children with 
acute lymphocytic leukemia (ALL) have resulted in a current cure rate 
of 75-80 percent. About 20 percent of children with ALL have poor 
prognostic characteristics and a much bleaker outcome. Results of a new 
trial using a modified chemotherapy regimen has resulted in a 70 
percent drop in the rate of treatment failures in these high risk 
children under 10 years of age; these children have a 5-year event-free 
survival of 84 percent with this new regimen.
    Nasopharyngeal cancer is relatively rare in the United States but 
quite common in Asia. Chinese American men have a 15-20 fold higher 
rate of this cancer than white American men. While nasopharyngeal 
cancer has been known to be responsive to radiotherapy or chemotherapy, 
a trial comparing the former to a combination of radiotherapy plus Cis-
Platin + 5-FU was stopped early because of profound benefit. The 3-year 
survival in the radiotherapy alone group was 47 percent, whereas, the 
combined group had a 78 percent 3-year survival, and a 60-percent 
reduction in mortality.
                    differential response to therapy
    Why some patients respond to a given therapy and others, with 
ostensibly the same disease, do not, is a central puzzle we are 
beginning to solve. One likely explanation is that the responders 
actually have a different disease than the non-responders. In a 
recently reported series of studies, one explanation for outcome 
differences in breast cancer has apparently emerged. About 30 percent 
of breast cancers make too much of a protein called, HER2/neu. These 
cancers appear to be more aggressive and new studies showed that these 
cancers respond significantly better to elevated doses of anthracycline 
drugs than cancers that don't overexpress this protein. This conclusion 
came from the analysis of several breast cancer treatment trials that 
were not originally designed to answer the question about the role of 
HER2 in the response to therapy. These subsequent analyses were done in 
order to explain why some women responded better to higher doses of 
therapy while others did not. Critical studies such as these require 
that scientists who have new ideas and new technologies have access to 
tissue samples that are linked to important clinical data. Over the 
past year, we have created a new approach to funding more of these 
important correlative studies and have developed a new set of 
mechanisms to expedite interactions between researchers with good ideas 
and researchers with access to tissue banks.
    One of the ultimate goals of cancer research is to uncover the 
molecular machinery of each cancer in order to target prevention and 
therapies to that machinery. The great hope is that such targeted 
approaches will prove to be both more effective and less toxic than our 
current approaches. This past year, based upon clinical trials results, 
the FDA approved the first two monoclonal antibodies, 
Herceptin and Rituximab, for the treatment of 
cancer. Each is directed at a molecule expressed on the surface of 
specific types of human cancer.
    Herceptin is directed against HER2, a protein discovered 
almost 20 years ago, and proposed as a potential therapeutic target 
almost 15 years ago. This new drug was tested this year against 
metastatic breast cancer, the most deadly and least treatable stage of 
this disease. When such patients are treated with the drug taxol, only 
16 percent experience a clinical response of tumor shrinkage. However, 
with the addition of Herceptin, 42 percent of patients have 
anti-tumor responses and these women experience a statistically 
significant prolongation of survival. As hoped for, Herceptin 
added relatively little toxicity. Now, we are working with the company 
that developed Herceptin to rapidly expand the evaluation of this agent 
in earlier stages of breast cancer and in the treatment of other 
cancers, such as ovarian, which overexpress the target of this drug.
    Non-Hodgkin's lymphoma is newly diagnosed each year in over 55,000 
Americans. It is one of the few cancers whose incidence has been 
rising. Fifty percent of those diagnosed will die of their disease and, 
as with so many cancers, we need new, more effective and less toxic 
therapies. Twenty years ago, basic immunologic research identified a 
molecule, CD20, specific to the surface of B lymphocytes which was also 
highly expressed on the surface of most lymphomas. An antibody directed 
against this molecule was shown to be able to kill cells and thus began 
a 15-year odyssey to engineer an anti-CD20 antibody which could be used 
in treatment. Last year, such an engineered antibody, 
Rituximab, was approved by the FDA. It is becoming the 
treatment of choice for patients with low grade lymphoma. It is as 
effective at inducing remission as chemotherapy but with very little 
toxicity. As with all such advances, we do not stop there but use these 
findings as a stepping stone for further development. Multiple clinical 
trials are underway to broaden the cancer targets for 
Rituximab, to combine it with chemotherapy and, in a very 
promising development, to arm the antibody with radionuclides. Early 
phase II studies with I \131\-labelled anti-CD20 show it to be five 
times more effective at inducing long-term disease-free survival than 
the best available chemotherapy. These promising results will need to 
be validated in definitive clinical trials with the hope that this new 
example of molecular therapy will profoundly alter the outlook for 
these cancer patients.
    These examples are just a sampling of recent clinical trials 
culminations. Our clinical trials not only examine new treatment 
regimens but also evaluate ways of reducing toxicity, decreasing pain 
and suffering and improving the short and long-term quality of life for 
cancer survivors.
    We are now instituting the first major reform and restructuring of 
the NCI national clinical trials system since it was established 40 
years ago. The goal of this restructuring is to make this national 
resource function even better by:
    (1) creating a new peer review system that will allow and encourage 
any scientist to propose the best ideas for large-scale clinical 
trials,
    (2) providing a complete menu of clinical trials options that will 
be available to all patients and all participating physicians,
    (3) improving the operating characteristics of the clinical trials 
system, reducing barriers to participation, speeding the conduct of the 
trials and enhancing the efficiency and effectiveness of these 
important studies,
    (4) moving to adequately fund this research system, and
    (5) improving our communication processes to provide everyone with 
comprehensible information about clinical trials.
    These changes will mean more clinical trials culminations over the 
next several years. This fiscal year, we have provided a 30 percent 
increase in funding to our national clinical trials system to enable 
these changes. Among other changes, this will allow us to increase the 
number of new trials initiated and to address more questions within all 
of our trials.
    We have also restructured our clinical trials capabilities within 
our intramural research program. This coming year, we intend to 
initiate definitive clinical trials to test the benefit of novel 
vaccine therapies directed against non-Hodgkin's lymphoma and melanoma, 
the two major cancers whose incidences are rising in the U.S.
    Clinical trials are the culminations of the research pipeline that 
must be filled, if we are to build on the progress made to date.
                       improving cancer detection
    Two years ago, we set up the Cancer Genome Anatomy Project (CGAP) 
to systematically identify the gene expression patterns that 
characterize human cancer. It is time now to begin to apply the 
gratifying progress of this project in order to develop new molecular 
classification schemes for patients with cancer. If successful, this 
will fundamentally change our approach to diagnosis, to the choice of 
therapy and to our ability to predict patient outcome. The Director's 
Challenge is a $50 million program to challenge the scientific 
community to accomplish just that and to deliver a new generation of 
diagnostic and prognostic practices to patients with cancer.
    We are anxious to realize the dream of having sensitive and 
accurate tests to detect cancer early when it is most curable. CGAP has 
enabled the discovery of literally hundreds of potential markers for 
cancer over the past two years. For example, one year ago, we knew of 
no potential unique marker for ovarian cancer. Today, CGAP has provided 
400 candidates ready to be tested. With the new funds we received this 
year, we are establishing the Early Detection Research Network to, for 
the first time, create a national research infrastructure to rapidly 
develop and test such potential markers for cancer. We are hoping that 
such tests will give us accurate, predictive and simple blood tests for 
all types of cancers.
    The ability to detect, diagnose and evaluate cancer by imaging is a 
critical part of our approach to these diseases. We have never had a 
rapid way to evaluate the constantly changing technologies within the 
context of clinical trials. To remedy that, this year, we established 
the diagnostic imaging research network. This network will begin by 
addressing important clinical questions, such as defining the role of 
CT scanning and magnetic resonance imaging in the staging of women with 
cervical cancer.
    There is a great need to assure that we fill and expand the 
pipeline of new agents for the prevention and treatment of cancer. This 
past year, we initiated a new program called RAID (for Rapid Access to 
Interventional Development) in order to fund the rapid transition of 
new therapeutic reagents from the laboratory to the clinic after 
rigorous peer review in order to identify the most promising proposals. 
In its first year, RAID will fund 20-30 new therapeutics for such rapid 
development. Due to its initial success, we hope to be able to expand 
RAID and are also adding a new program called RAPID to offer the same 
process for agents aimed at preventing cancer.
    Progress against cancer takes place through both the development of 
knowledge and of new technologies. New technology often enables the 
discovery of new knowledge as well as the application of that knowledge 
to people with, or at risk for, cancer. Evaluating, reviewing and 
funding research aimed at acquiring new knowledge requires different 
approaches than for technology development. For these reasons, this 
year, we created a new grant mechanism called the Phased Innovation 
Award which is already proving to be a highly sought after award 
tailored to technology development.
                          new efforts in 1999
    New resources over this past year has enabled us to initiate a wide 
range of new research programs and projects. These include new programs 
in tobacco-related research, initiatives in basic biobehavioral and 
health communications research and a variety of programs aimed at more 
rapidly translating basic discoveries to clinical testing in 
prevention, detection, diagnosis and treatment.
    The progress we are making in cancer research does not equally 
reach all Americans. Minorities and the underserved often have higher 
incidence and mortality rates and poorer outcomes. The NCI supports an 
extensive research program aimed at identifying and explaining the 
unequal burden of cancer in our diverse society. This year, we will 
expand our support of cancer control and research infrastructures in 
minority and underserved communities as one component of addressing the 
unequal cancer burden.
    We have improved and enlarged our programs to monitor cancer burden 
and to identify environmental factors that may contribute to that 
burden. This year, we will publish, for the second time, a 25-year 
survey of cancer mortality rates, cancer-by-cancer, for all 3000 U.S. 
counties. This will serve as the basis for our ongoing search for clues 
to environmental, regional and occupational causes of cancer.
    A two-year strategic effort to redesign our training and career 
development programs aimed especially at strengthening clinical 
research, multi-disciplinary training and training opportunities for 
minorities and the underserved, has begun to be implemented with a 30 
percent increase in dollars aimed at training and career development in 
fiscal year 1999 over fiscal year 1998.
    Our Cancer Centers Program which was redesigned two years ago, has 
grown to include 5 new centers in parts of the country which had not 
had NCI-designated cancer centers over the past two years and we expect 
to fund 2-4 new centers in the current year.
    Finally, a 15 percent increase in dollars in the 1999 research 
projects grants pool is enabling us to fund approximately 400 
additional projects and a total of 1229 competing grants this year, 
including our AIDS research program.
    This year, the President has proposed a 2.4 percent increase in the 
NCI cancer budget to $2,732,795,000. This will allow us to continue to 
support the many initiatives that I have outlined for you. Funds for 
AIDS research are included with the request of the Office of AIDS 
Research.
    The activities of the NCI are covered within the NIH-wide Annual 
Performance Plan required under the Government Performance and Results 
Act (GPRA). The fiscal year 2000 performance goals and measures for NIH 
are detailed in this performance plan and are linked to both the budget 
and the HHS GPRA Strategic Plan which was transmitted to Congress on 
September 30, 1997.
                                 ______
                                 
                Prepared Statement of Dr. Claude Lenfant
    Mr. Chairman and Members of the Committee: I am pleased to present 
the President's budget request for the National Heart, Lung, and Blood 
Institute (NHLBI) for fiscal year 2000, a sum of $1,759.8 million, an 
increase of $41.2 million above the comparable fiscal year 1999 
appropriation. Including the estimated allocation for AIDS, the total 
support proposed for NHLBI is $1,825.8 million, an increase of $42.7 
million over the comparable fiscal year 1999 appropriation. Funds for 
NHLBI efforts in AIDS research are included within the Office of AIDS 
Research budget request.
    The activities of the NHLBI are covered within the NIH-wide Annual 
Performance Plan required under the Government Performance and Results 
Act (GPRA). The fiscal year 2000 performance goals and measures for NIH 
are detailed in this performance plan and are linked to both the budget 
and the HHS GPRA Strategic Plan which was transmitted to Congress on 
September 30, 1997. NIH's performance targets in the Plan are partially 
a function of resource levels requested in the President's Budget and 
could change based upon final Congressional Appropriations action. NIH 
looks forward to Congress' feedback on the usefulness of its 
Performance Plan, as well as to working with Congress on achieving the 
NIH goals laid out in this Plan.
                      fiscal year 1999 initiatives
    We are very appreciative of the support provided by the Committee 
for fiscal year 1999. Let me begin by describing some new programs that 
we have put in place--added efforts that would not have been possible 
in the absence of the generous increment in appropriated funds.
    The NHLBI has expanded its program of specialized centers of 
research in pediatric cardiovascular disease. Congenital heart disease, 
the most common type of birth defect, affects about 32,000 newborns 
annually according to the National Hospital Discharge Survey. In 
addition, many children in the United States suffer from acquired 
cardiovascular disorders. An increase in the number of centers and in 
the funding level for this program will ensure that full advantage is 
taken of the extraordinary research opportunities that exist to address 
this pressing public health need.
    The Study of Coronary Revascularization and Therapeutics Evaluation 
(SOCRATES) will address treatment of patients with chronic coronary 
heart disease who suffer from cardiac ischemia. Both pharmacologic and 
revascularization approaches are widely used to relieve anginal pain, 
but evidence suggests that a more aggressive approach that goes beyond 
symptom relief and aims to maximize blood flow to the heart muscle may 
be beneficial. This trial will examine the benefits of such an approach 
in terms of morbidity and mortality, quality of life, and health care 
costs.
    Although diabetic patients suffer greatly from their primary 
illness, most die of cardiovascular disease, not of diabetes itself. 
The Institute has issued requests for proposals to conduct the 
Prevention of Cardiovascular Disease in Diabetes Mellitus trial. This 
9-year study seeks to determine whether the occurrence of major 
cardiovascular events in type 2 diabetes patients can be reduced by one 
of several regimens to control blood sugar, lipid, and blood pressure 
levels. It addresses an urgent public health problem that is expected 
to become even greater as the number of Americans who are obese, who 
are elderly, or who are members of minority groups with a particular 
susceptibility to diabetes grows.
    A new program of basic research will bring the modern approaches of 
molecular medicine to bear on the problem of abdominal aortic aneurysm. 
This increasingly common vascular disease often goes undetected until a 
rupture occurs, often with fatal consequences. Investigators will 
explore factors involved in its initiation, progression, and rupture, 
with the ultimate goal of uncovering effective strategies for 
management and prevention.
    Despite major advances in understanding asthma and developing new 
therapeutic modalities to control symptoms and prevent exacerbations, 
effective therapies are not widely used in the pediatric health care 
community. Moreover, the long-term effects and side effects of asthma 
medications in children, especially children under 12 years of age, are 
not well understood. An interactive Pediatric Clinical Asthma Research 
Network is being established to evaluate current and novel therapies 
and management strategies for children with asthma. It is anticipated 
that one outcome of the network--an approach we have used for adult 
asthma research--is to promote rapid dissemination of findings to the 
health care community. The Institute has also begun a program of basic 
research to uncover the mechanisms underlying changes in the structure 
and composition of the airways that accompany asthma, in the 
expectation that gains in fundamental knowledge will eventually suggest 
new strategies for prevention.
    Strong interest continues in the research finding, reported last 
year, that retinoic acid stimulates growth of new air sacs, or alveoli, 
in the lungs of mice who have experimentally induced emphysema, and 
this work is now being extended to nonhuman primates. Moreover, the 
NHLBI has launched a program of clinical centers to conduct preliminary 
studies preparatory to testing this approach in human patients. A new 
program of basic research has also been set in motion to improve 
understanding of how alveolar formation is regulated at the genetic, 
cellular, and molecular levels. Its findings are expected to lead 
ultimately to clinical interventions to help the patient who has an 
inadequate number of alveoli as a result of aberrant lung development, 
injury, or disease.
    In the area of blood safety, a new program will focus on 
development of assay methods for the detection of Creutzfeldt-Jakob 
(CJD) disease. This rare, but invariably fatal, disease causes 
degeneration of the central nervous system. Recent reports of blood 
donors who were diagnosed with CJD after having made a number of 
donations stimulated concern about possible transmission by blood 
components, but answers to that and other questions about CJD have been 
impeded by the lack of an assay system. The goal of this initiative is 
to develop a system capable of screening donated blood and donors of 
organs or tissues.
    Currently available treatments for Cooley's anemia involve lifelong 
transfusions of red blood cells every 2 to 4 weeks, but the 
transfusions also result in toxic amounts of iron being absorbed by the 
body. Removal of the excess iron is an expensive, burdensome procedure 
that often leads to poor patient compliance. The Cooley's anemia 
research community has, for some time, urged the NHLBI to establish a 
clinical research network to facilitate exploration of alternative and 
less onerous treatments and, ultimately, find a cure for Cooley's 
anemia. The Institute is pleased that it is now able to move forward in 
this important area.
                           research advances
    According to the National Hospital Discharge Survey, more than 
800,000 revascularization procedures are performed in the United States 
each year, either through coronary artery bypass grafting or 
angioplasty. These treatments extend and improve life, but they are 
very expensive and not always successful. Just recently, scientists 
demonstrated that by injecting into the heart DNA that encodes for a 
vascular growth factor, blood flow could be restored in patients with 
severely blocked coronary arteries. As the safety and reliability of 
this approach become more firmly established, it is expected to 
revolutionize our ability to provide cost-effective treatment to many 
patients with established coronary disease.
    The mature human heart has no ability to regenerate cells that die; 
therefore, the only hope for patients with end-stage heart failure is 
heart transplantation--an option that carries considerable risk and is 
quite limited by the unavailability of donor hearts. However, promising 
new approaches are emerging from basic science laboratories. Scientists 
have been successful in transplanting leg muscle cells of rabbits into 
damaged areas of their hearts. Remarkably, these skeletal muscle cells 
engrafted and took on the appearance and function of heart muscle 
cells. With further development, such an approach could usher in a new 
era of treatment options for an increasingly prevalent, ultimately 
fatal, disease.
    For some time, infections have been implicated in the development 
of atherosclerosis, and now it appears that this may be the case with 
asthma, as well. Researchers have found Mycoplasma pneumoniae, the 
microorganism responsible for what is colloquially termed ``walking 
pneumonia,'' in the airways of a large proportion of adults with 
chronic asthma. Moreover, antibiotic treatment of such patients 
improves lung function, reduces inflammation, and perhaps eases 
debilitating symptoms as well. This surprising discovery suggests an 
entirely new approach to asthma treatment and prevention.
    The field of blood stem cell transplantation illustrates the rapid 
pace at which science is moving. When I became director of the NHLBI in 
1982, the notion that transplantation could be done successfully with 
marrow from an unrelated donor seemed speculative, at best. Ten years 
later, the feasibility of unrelated-donor transplantation was well 
established, and the search was on for alternative sources of stem 
cells. At that time, we provided funding for a futuristic proposal from 
the New York Blood Center to collect and bank the umbilical-cord blood 
of newborns that is usually discarded, but is rich in stem cells. We 
now have the results of the first 562 transplants performed using this 
cord blood, and they are truly remarkable. Success rates of cord blood 
transplants--even when donorrecipient tissue types were imperfectly 
matched--were comparable to the outcomes achieved with closely matched 
unrelated-donor marrow transplants. Because cord blood is readily 
available, can be collected at no risk to the newborn donor, and is 
less likely than bone marrow to transmit infection, this approach may 
provide new hope for thousands of patients in need of a transplant.
    Meanwhile, we have much reason to believe that stem cell 
transplants may offer a solution to the suffering of patients with 
severe sickle cell disease. Among 49 children who received bone marrow 
stem cells from matched sibling donors through an NHLBI-supported 
research program, 94 percent have survived to date and the vast 
majority have experienced considerable improvement in their disease. 
Quite recently, medical history was made when a 12-year-old boy 
received the first cord blood transplant for sickle cell disease. We 
are following progress in this area closely, in the expectation that a 
cure for sickle cell disease may ultimately be within reach.
                        prevention and education
    Despite the many exciting scientific opportunities that promise 
future benefits, we have not lost sight of our public health mission 
and our imperative to use the knowledge that we have available today to 
benefit the people of this country. A recent analysis of data from the 
Framingham Heart Study is giving new momentum to our research and 
education/prevention efforts. It revealed that one out of every two 
men, and one out of every three women, in the United States will 
develop coronary heart disease at some point during their lifetimes. 
This constitutes a staggering burden on the nation, when one considers 
the premature death, the loss in quality of life, and the expense of 
hospitalizations, medications, and procedures to treat this disease. 
Moreover, the study indicates that even among people who reach age 70 
with healthy hearts, one-third of men and one-fourth of women will 
develop coronary heart disease during their remaining years. Thus, the 
myth that those who navigate their middle years disease-free are 
somehow invulnerable is just that. The message from these findings is 
that prevention of coronary heart disease is everybody's business, that 
it must start early, and that it must continue throughout life.
    To ensure that the maximum benefit is derived from our research 
programs, we frequently and critically assess new discoveries and 
incorporate them into our recommendations for health care 
practitioners, patients, and the public. Last summer, for instance, we 
released The Clinical Guidelines on the Identification, Evaluation, and 
Treatment of Overweight and Obesity in Adults: The Evidence Report in 
cooperation with the National Institute of Diabetes and Digestive and 
Kidney Diseases. This represents the first time that a panel of experts 
thoroughly examined the scientific evidence for risks associated with 
excess weight and its treatments, and developed recommendations on that 
basis.
    We are continually evolving in our ability to make our educational 
materials accessible and useful to their intended audiences, and our 
Web site has provided noteworthy new opportunities. Health care 
practitioners can now access our Asthma Management Model System, an 
information management tool designed to facilitate science-based 
medicine in long-term asthma management. Live Healthier, Live Longer is 
an interactive site for patients with heart disease. It features a 
``Virtual Grocery Store,'' a ``Cyber Kitchen,'' a ``Cyber Cafe,'' a 
``Fitness Room,'' and a resource library to assist patients in lowering 
their blood cholesterol levels. And, as we exploit the new 
technologies, we continue to employ some time-honored methods for 
reaching the average American: Our Healthy Heart Handbook for Women is 
now being promoted on the back of two million cereal boxes, compliments 
of General Mills.
    We are confident that our approach, which is driven both by 
compelling public health needs and by extraordinary scientific 
opportunities, will continue to yield similarly gratifying results in 
the future.
                                 ______
                                 
              Prepared Statement of Dr. Harold C. Slavkin
    Mr. Chairman and Members of the Committee: The President in his 
fiscal year 2000 budget has proposed that the National Institute of 
Dental and Craniofacial Research (NIDCR) receive $225.7 million, an 
increase of $5.3 million (or 2.4 percent) over the non-AIDS portion of 
the fiscal year 1999 appropriation. Including the estimated allocation 
for AIDS, total support proposed for NIDCR is $244.1 million, an 
increase of $5.7 million over the fiscal year 1999 appropriation. Funds 
for NIDCR efforts in AIDS research are included within the Office of 
AIDS Research budget request.
                            what's in a face
    Several hundred genes of the face, jaws, mouth and teeth have been 
identified since we met last year, adding to our capacity to address 
the many diseases and disorders that afflict our Nation. In 1912, 
Octave Crouzon published the first scientific paper using the term 
``craniofacial.'' NIDCR-supported scientists have now identified, 
sequenced and mapped the gene responsible for Crouzon's syndrome--a 
point mutation in the fibroblast growth factor receptor 2 gene. 
Craniofacial encompasses the human face, and reflects a research 
portfolio that ranges from the prenatal developmental processes that 
form the human face and dentition, to the plethora of local and 
systemic diseases and disorders that attack dental, oral, and 
craniofacial tissues and structures throughout the lifespan.
        burden of dental and craniofacial diseases and disorders
    Dental and craniofacial diseases and disorders are among the most 
common health problems affecting the people of the United States and 
around the world. Data on the burden imposed by selected dental and 
craniofacial diseases and disorders are presented in Poster 2. These 
conditions range from birth defects like cleft lip and palate , 
injuries to the head and face, and severe malocclusions, to devastating 
head and neck cancers. Oral infections such as dental caries, 
periodontal diseases, and herpes simplex lesions are commonly seen in 
our population. Orofacial pain is a major component of 
temporomandibular joint diseases (TMD), Bell's palsy, trigeminal 
neuralgia and fibromyalgia. In addition, dental and craniofacial 
conditions are common manifestations of both systemic diseases and 
treatment of such diseases. These manifestations include oral 
candidiasis, mucositis, xerostomia (dry mouth) and some forms of 
periodontal diseases. Many dental and craniofacial health problems have 
a disproportionately high impact on particular population subgroups.
           identifying the building blocks of the human face
    Genes that regulate the constellation of biological processes 
required to form the human face are being discovered. This rapidly 
expanding knowledge database for the craniofacial genome is becoming 
the new foundation for molecular medicine and dentistry. Numerous 
craniofacial syndromes are now diagnosed using gene-based criteria. 
However, if we acknowledge that the making of the face is not a simple 
sequential cause-effect problem, we are brought face-to-face with the 
complexity and nonlinear nature of a developing biological system. 
Progress on identifying the genetics of human facial syndomes is 
summarized in Poster 3.
    What is exciting and new is our realization that the chemistry of 
making a human face requires many variable combinations of circuits of 
biological information. This realization is made possible by recent 
advances in DNA chips or microarray techniques, some of which have been 
supported with NIDCR funds. Different kinds of knowledge about faces, 
including microarray data, are illustrated in Poster 4. Rather than 
gene-by-gene approaches, microarray provides a strategy to pursue 
functional genomics by analysis of thousands of genes during a precise 
stage of craniofacial development within specific cells or tissues. 
This technology also fosters knowledge discovery, or mining of 
databases, enhances our capacity to extract potentially useful 
information and enables the search for global interrelationships. This 
is referred to as ``data mining'' and is rapidly advancing through the 
development of ``siftware'' software. Meanwhile, investigations into 
the molecular biology of facial development and numerous craniofacial 
syndromes are discovering new pieces to the biological puzzle of the 
design and fabrication of the craniofacial-dental complex. DNA chips 
are also being used to accelerate the completion of microbial, animal 
and human genomes. Transgenic animal models such as the zebrafish and 
the mouse are being used to explore the functional significance of the 
multiple combinations of genes required for making the human 
craniofacial complex. Benefits from these discoveries include gene-
based diagnostics for hundreds of inherited craniofacial birth defects, 
and gene-based therapeutics and biomaterials for the repair and 
regeneration of the tissues of the human face. So--what's in a face?
    The panels of Poster 5 highlight the following selected research 
advances.
                     immunization for dental caries
    Fluoride and dental sealants are the mainstays of our Nation's 
dental caries prevention efforts, but much more needs to be done if we 
are to address the most common childhood disease. Nearly 40 percent of 
children aged 2-9 years develop caries in primary teeth\1\. Disparities 
are found in the burden of disease; 25 percent of U.S. children aged 5-
17 account for 80 percent of the disease burden in that age group\1\.
---------------------------------------------------------------------------
    \1\ Kaste LM, Selwitz RH, Oldakowski RJ, Brunelle JA, Winn DM, 
Brown LJ: Journal of Dental Research 75: 631-641, 1996.
---------------------------------------------------------------------------
    Tooth decay is an infectious disease caused by Streptococcus 
mutans; a bacterial microbe that can be transmitted from mother to 
infant, and that can colonize the surfaces of teeth in early childhood. 
Research from animal models and preliminary human studies now suggest 
the feasibility of a molecular-based immunization for dental caries. A 
current NIDCR-sponsored project is developing plantibodies, antibodies 
directed against specific Streptococcus mutans antigens, which are 
produced by genetically engineered plants and then can be eaten to 
confer passive immunity. The immunoglobulin A (IgA) antibodies directed 
against the Streptococcus mutans antigens have been found effective in 
preventing recolonization on the enamel tooth surface by Streptococcus 
mutans. To date, animals and humans fed plantibodies have shown no 
toxic side effects. A phase I clinical trial of plantibodies in 
children ``at risk'' for rampant dental caries is under way.
                   nidcr microbial genomics projects
    Understanding how microbes function in complex ecosystems is a 
critical step towards controlling the numerous infections they cause. 
One of these microbes, Candida albicans, is a yeast that lives on the 
mucous membranes of the mouth and under certain conditions creates a 
life-threatening systemic infection. Candida causes a variety of 
infections ranging from mucosal infections in generally healthy persons 
to life-threatening systemic infections in individuals with impaired or 
compromised immunity. Candidiasis is one of the earliest and most 
common opportunistic infections to occur in the oral cavity of HIV-
infected individuals. Because of the few safe and effective antifungal 
drugs, along with what appears to be increased drug resistance to the 
most common treatments for candidiasis, it is important to rapidly 
complete the Candida genome and then use this knowledge database for 
functional genomic studies with microarray technology to identify and 
develop innovative and effective new drugs.
    The completion of the Candida genome is expected by the end of this 
calendar year. The anticipated database will contain genes related to 
yeast reproduction, drug resistance, and pathogenicity. We also 
anticipate the completion of four other microbial genome studies 
designed to understand the molecular biology of important opportunistic 
oral/dental pathogens including Porphryomonas gingivalis, Streptococcus 
mutans, Actinobacillus actinomycetemcomitans and Treponema denticola.
                 advances in understanding oral cancer
    Recent findings from NIDCR-sponsored projects are addressing basic, 
translational and clinical research questions. How do oral epithelial 
cells become malignant? How can we detect precancerous cells? How can 
we develop ``smarter'' therapies without toxic side effects? How can we 
prevent or reduce the burden of oral cancer? Three different tumor 
suppression mechanisms have recently been discovered: DOC-1, PTEN, and 
E-cadherin. DOC-1 is a new tumor suppressor gene and the protein it 
encodes is expressed in normal human tissues including oral 
keratinocytes. However, DOC-1 protein is not detectable in human oral 
cancers. This discovery suggests that a faulty DOC-1 gene may 
contribute to the development of oral cancer. PTEN is another tumor 
suppressor gene discovered to be defective in many advanced human 
cancers, including those in the head and neck region. NIDCR scientists 
have suggested how loss of PTEN may lead to cancer progression. E-
cadherin is a cell-surface membrane protein that mediates cell to cell 
adhesion. E-cadherin was discovered to regulate the growth and survival 
of oral squamous cancer cells. Importantly, anti-E-cadherin antibodies 
inhibit the growth of oral cancer cells. Understanding the genetic 
basis for cancers afflicting the head and neck provides the opportunity 
to develop new diagnostics and preventive strategies.
                        new era of therapeutics
    NIDCR scientists are in the forefront of developing the next 
generation of gene-based therapeutics and biomaterials. The advances 
have the potential to address a wide range of oral, dental, 
craniofacial and systemic health problems. Poster 6 summarizes selected 
promising research areas. Salivary glands. I am pleased to report that 
gene therapy to restore salivary gland function was successful in an 
animal model, and work on the development of an artificial salivary 
gland to produce saliva is in progress. Salivary gland dysfunctions are 
problematic for patients with Sjogren's syndrome, cystic fibrosis, and 
tissue damage resulting from radiation therapy. Bone and joint tissues. 
A new mouse model of osteoporosis has been developed, and results from 
work on gene therapy in arthritic rats are promising. Research on bone 
morphogenetic proteins (BMPs) and cartilage-derived morphogenetic 
proteins (CDMPs) is directed to therapeutic regeneration of these 
tissues. Disorders of bone and joint tissue pose a large national 
health problem that will grow larger with the aging of the population. 
Tooth enamel. Our capacity to design and fabricate an enamel bioceramic 
is progressing. Five tooth enamel genes have been identified, sequenced 
and mapped to chromosomes and their protein products are now being used 
in new strategies for enamel repair and regeneration. Pain. We are 
continuing to learn how to stimulate the body's natural 
``therapeutics.'' An animal model of gene therapy to stimulate 
production of beta-endorphins may be the basis of a future treatment 
for chronic pain conditions. Wound healing. A variety of new molecules 
have been discovered that may enhance soft as well as hard tissue wound 
healing. Sometimes unexpected discoveries in one field open the door to 
a new line of research in a different field. Secretory leukocyte 
protease inhibitor (SLPI), a component of saliva known to inhibit HIV, 
is now being explored as a potential therapy for defective wound 
healing.
    The activities of the NIDCR are covered within the NIH-wide Annual 
Performance Plan required under the Government Performance and Results 
Act (GPRA). The fiscal year 2000 performance goals and measures for NIH 
are detailed in this performance plan and are linked to both the budget 
and the HHS GPRA Strategic Plan which was transmitted to Congress on 
September 30, 1997. NIH's performance targets in the Plan are partially 
a function of resource levels requested in the President's Budget and 
could change based upon final Congressional Appropriations action. NIH 
looks forward to Congress' feedback on the usefulness of its 
Performance Plan, as well as to working with Congress on achieving the 
NIH goals laid out in this Plan.
    This is an exciting time for NIDCR and for the NIH. We are poised 
to capitalize on the many significant advances in fundamental science, 
especially in genetics, structural biology, molecular, cellular and 
developmental biology, the neurosciences, computer science and 
innovations in imaging technologies. Our Nation's investment in 
biomedical research has paid enormous dividends and will continue to do 
so well into the next century.
                                 ______
                                 
                Prepared Statement of Dr. Phillip Gorden
    Mr. Chairman and Members of the Committee: I am pleased to testify 
on behalf of the research programs, progress and opportunities of the 
National Institute of Diabetes and Digestive and Kidney Diseases 
(NIDDK). Our institute has responsibility for the national biomedical 
research effort to combat some of the most important, chronic diseases 
in this country, including diabetes, endocrine and metabolic diseases; 
digestive diseases and nutritional disorders; and diseases of the 
kidney, urologic tract and blood. These diseases inflict tremendous 
suffering and health care costs on the American people because they are 
life-long, debilitating, and often relentless. The President in his 
fiscal year 2000 budget proposed that the NIDDK receive $1,002.7 
million, an increase of $23.4 million (2.4 percent) over the comparable 
fiscal year 1999 appropriation. Including the estimated allocation for 
AIDS, total support proposed for NIDDK is $1,021.1 million, an increase 
of $23.9 million over the fiscal year 1999 appropriation. Funds for 
NIDDK efforts in AIDS research are included within the Office of AIDS 
Research budget request.
    The activities of the NIDDK are covered within the NIH-wide Annual 
Performance Plan required under the Government Performance and Results 
Act (GPRA). The fiscal year 2000 performance goals and measures for NIH 
are detailed in this performance plan and are linked to both the budget 
and the HHS GPRA Strategic Plan which was transmitted to Congress on 
September 30, 1997. NIH's performance targets in the Plan are partially 
a function of resource levels requested in the President's Budget and 
could change based upon final Congressional Appropriations action. NIH 
looks forward to Congress' feedback on the usefulness of its 
Performance Plan, as well as to working with Congress on achieving the 
NIH goals laid out in this Plan.
    As the Nation turns the page to the 21st century, the NIDDK will be 
celebrating its 50th anniversary. Thus, it is a time for both 
reflecting upon the Institute's accomplishments and looking forward to 
the promise of future research advances. In this vein I would like to 
strike two important themes. The first is to emphasize our clinical 
advances and their special relevance to the treatment and prevention of 
disease. The second is to underscore the vital basic science 
discoveries that create the technology that drives these advances. Both 
aspects of research are critically important and must be strongly 
supported and nurtured.
  clinical advances and their special relevance to the treatment and 
                         prevention of disease
    A major multicenter, large-scale clinical trial in patients with 
type 2 diabetes has clearly demonstrated the efficacy of good blood 
sugar control in ameliorating the microvascular eye, kidney, and nerve 
complications. This study is an important confirmation of the NIDDK's 
major Diabetes Control and Complications Trial, which demonstrated 
similar benefits in type 1 diabetes. In addition, the recently 
completed type 2 trial demonstrated that good blood pressure control 
produced a major benefit in decreasing macro vascular events such as 
stroke. These findings give new emphasis to the value of early 
treatment in type 2 diabetes. They also reinforce the importance of our 
Diabetes Prevention Program, a major clinical trial for which 
recruitment is almost complete. This trial focuses on adding a 
prevention strategy to existing therapeutic approaches. It is 
especially addressed to our minority populations who are 
disproportionately affected by type 2 diabetes.
    Previously, we considered end stage renal disease to be an 
inexorable consequence of severe kidney complications of diabetes. 
Recent studies now show that the type of long-term glucose control that 
can be accomplished by pancreas transplantation can actually lead, over 
a long period of time, to a reversal of these complications. These 
remarkable findings have revolutionized our clinical thinking about the 
progression of the kidney complications of diabetes and have reinforced 
the importance of glucose control as demonstrated in other studies.
    Advances in producing immune tolerance to enable transplant 
recipients to accept and retain donated organs and tissue have given 
new emphasis to the field of transplantation and its role in the 
treatment of diabetes and end-stage renal disease. To capitalize on 
these achievements, we are investing in a new intramural effort 
focusing on both kidney transplantation and pancreatic islet cell 
transplantation. We are also pursuing a major multi-institution 
initiative in islet cell transplantation. These endeavors are an 
excellent example of how NIDDK program development is shaped by 
emerging scientific opportunities that are created by technology 
development.
    In hepatitis C, the NIDDK intramural program carried out the 
initial studies demonstrating the therapeutic efficacy of alpha 
interferon. This advance was possible because of fundamental studies 
showing that this type of agent could inhibit viral replication and 
because of biotechnology advances permitting the manufacture of such 
compounds. These studies spurred further drug development and a more 
profound understanding of the nature of the hepatitis C virus. As a 
result, we now have a new combination therapy using alpha interferon 
and another anti-viral agent, ribavirin. Used together, these drugs 
lead to long-term remission of hepatitis C infection in up to 40 
percent of individuals. Furthermore, using knowledge about the various 
subtypes of viruses that lead to this disease, we can tailor this 
therapeutic strategy more effectively to individual patients. These 
developments constitute a significant therapeutic advance in a disease 
that affects over four million Americans and is the leading cause of 
end-stage liver disease.
    For the debilitating bone disease, osteoporosis, we have introduced 
a number of therapeutic strategies founded on basic research and made 
possible by the technology revolution. During the past year, 
researchers have demonstrated that parathyroid hormone, an important 
regulator of bone metabolism, has an important beneficial effect in 
increasing bone density. This research adds another impressive clinical 
tool to the treatment and understanding of osteoporosis.
  important basic discoveries create technologies that drive clinical 
                                advances
    In obesity research, the initial discovery of the major energy 
regulator, leptin, in a mouse model of obesity led to the discovery in 
rodents of multiple gene mutations, which control critical aspects of 
both eating and energy regulation. These findings have now led to the 
discovery of at least five different genetic defects in humans that 
lead to obesity. These important research advances have relevance not 
only to our understanding of obesity per se, but also to the inter-
relationship of obesity and diabetes.
    While leptin itself may not prove to be a major therapy for 
obesity, it has clearly led us in directions that are likely to produce 
major therapeutic progress. In addition, these discoveries have infused 
our obesity research portfolio with innovative ideas for further 
understanding of the molecular basis of obesity. This research, in 
turn, is expected to reveal new therapeutic targets. For example, we 
are making a substantial investment in a multi-center clinical trial to 
demonstrate the health benefits of long-term, voluntary weight loss. 
This clinical trial will be conducted in obese patients with type 2 
diabetes. In this way, we will test both lifestyle and drug strategies 
highly relevant to both obesity and diabetes.
    In addition, our major investment in genetic and functional 
genomics research has led to the discovery of at least six separate 
genetic defects in rare forms of type 2 diabetes. These studies have 
stimulated collaborative research to penetrate the complexity of 
genetic abnormalities in both type 1 and type 2 diabetes. Expansion of 
these studies is now under way, with an emphasis on the kidney 
complications of diabetes. Thus, we are now making a major commitment 
to a large-scale study of the genetics of diabetes per se and the 
genetic susceptibility to diabetic renal disease.
    Ground-breaking discoveries of genes that cause cystic fibrosis, 
polycystic kidney disease, and hemochromatosis are leading to 
investments to an understanding of the functions of these genes. These 
discoveries give us the opportunity to develop screening strategies for 
early intervention in the iron-overload syndromes, such as 
hemochromatosis. They likewise provide promising opportunities to 
discover new therapeutic strategies for other liver diseases, Cooley's 
anemia, and neurodegenerative diseases.
    Our endocrine program has provided the basis for understanding the 
development of designer-type drugs, such as estrogen compounds. 
Technology has enabled researchers to devise novel drugs, which have 
specific beneficial effects on certain tissues, such as bone, and do 
not carry the adverse effects on breast and uterus seen in the more 
classic estrogen preparations. We are now beginning to understand the 
basis for this type of tissue specificity, which affords us the 
opportunity to use knowledge derived from basic research to develop 
clinical approaches to endocrine-responsive cancers, such as prostate 
and breast cancer.
                       infrastructure development
    To sustain and enhance these clinical advances, and the fundamental 
science that drives the technologic applications from which they flow, 
it is imperative that we maintain a strong infrastructure of support. 
The first and perhaps most important component of the research 
enterprise is ``human infrastructure.'' We are renewing our efforts to 
strengthen research training and career development to ensure that we 
have the cadre of talented scientists needed for the 21st century. We 
are encouraging and participating in the NIH-wide effort to bolster the 
recruitment and training of modern-day clinical investigators. We are 
also making a major investment in biotechnology centers in an attempt 
to use the most modern approaches to both gene discovery and its 
application to gene function and to therapeutic advancement. 
Complementing these activities are NIDDK's participation in trans-NIH 
infrastructure initiatives such as the zebrafish and mouse genome 
efforts to provide critical research resources to investigators.
    Other examples abound demonstrating that an insight gained from 
undifferentiated, technology-based laboratory research is often 
transformed into a clinical stride forward, with widespread application 
to various disease processes. For instance, the generation of new 
knowledge about the physiology of erectile function has helped pave the 
way to the development of agents such as Viagra. Another example is the 
use of modern technology to develop antibody treatment for refractory 
Crohn's disease, and to gain insights into processes that are 
implicated in areas of women's urologic health such as interstitial 
cystitis and incontinence.
    Genetic engineering techniques enabled the production of synthetic 
human erythropoietin, a hormone useful in treating the anemia of end-
stage renal disease and other conditions. Most recent studies have 
shown that a modified form of erythropoietin, linking two molecules 
together, can create a more potent drug with a longer half-life. With 
this new approach, it is possible to reduce the cost of this treatment 
while maintaining its efficacy.
    We are also able to conceptualize totally new and promising 
strategies based on a more profound understanding of underlying disease 
processes. Because of clinical studies made possible by high-technology 
basic research, we are developing new prevention strategies to fight 
disease. For example, both animal and human studies of type 1 diabetes 
demonstrate a shift from beneficial to destructive inflammatory 
mediators of the immune system called cytokines. With this knowledge, 
we are formulating innovative, prevention-oriented approaches, 
including the development of special reagents aimed at interdicting 
this process.
    Modern technology lets us visualize disease at the molecular level; 
measure and assess biologic events in amazingly precise ways; develop 
therapies that are site-specific; and test hypotheses in sophisticated 
model systems. The application of these technologies to basic research 
questions in the laboratory is often the critical first step to 
combating disease.
    At the threshold to the 21st century, we are on the brink of 
enormous clinical progress. In some diseases areas, we sense 
extraordinary research momentum propelling us forward toward major 
medical advances. In other areas, we are still at an ``interface'' 
between an important, clinically-relevant finding that augurs eventual 
application to the practice of medicine. In still others, much more 
basic research needs to be done before clinical insights can surface. 
In every field, however, the technology revolution is moving basic 
research forward into the clinical arena at an unprecedented and truly 
exciting pace.
                                 ______
                                 
               Prepared Statement of Dr. Gerald Fischbach
    Mr. Chairman and Committee Members: Mr. Chairman and members of the 
Committee. I am pleased to present the President's non-AIDS budget 
request for the NINDS for fiscal year 2000, a sum of $890,816,000, 
which reflects an increase of $20,842,000 over the comparable fiscal 
year 1999 appropriation. Including the estimated allocation for AIDS, 
total support requested for NINDS is $920,970,000, an increase of 
$21,563,000 over the fiscal year 1999 appropriation. Funds for the 
NINDS efforts in AIDS research are included within the Office of AIDS 
Research budget request.
    Thank you for the opportunity to appear before this Committee. I am 
Gerald Fischbach. I assumed this challenging job with great enthusiasm 
seven months ago, after 30 years of research, teaching, and academic 
administration. My enthusiasm is based on the rapid advance of 
neuroscience research at all levels of analysis from molecules to mind, 
and on the desperate need to apply those new discoveries to the 
devastating disorders of the nervous system. Scientific opportunities 
are abundant, the need for preventing and treating nervous system 
diseases has never been greater, and the confidence of the public in 
biomedical research has never been stronger.
    Perhaps because it is so complex, the nervous system is also very 
vulnerable. The immature nervous system is subject to muscular 
dystrophies, spinal muscular atrophy, autism, hereditary ataxias, 
cerebral palsy, and many other developmental disorders. Among the 
common maladies in the mature nervous system are stroke, trauma, 
multiple sclerosis, brain tumors, and chronic degenerative disorders 
such as amyotrophic lateral sclerosis, Parkinson's, and Alzheimer's 
disease. Nervous system diseases rob people of their ability to feel, 
to move, to remember, and, ultimately of their identity. They place 
unspeakable burdens on families as well as patients.
    The mission of NINDS is to reduce the burden of neurological 
disorders by conducting and supporting research on the normal and 
diseased nervous system. To move toward achieving this mission, we have 
initiated a new, intensive planning process. More than 100 leading 
neuroscientists, drawn from the extramural community and the intramural 
program, joined our staff and members of the lay public to suggest 
areas of opportunity in the coming two to three years. This is the 
first step in an ongoing effort to set priorities in an era of changing 
needs and opportunities. An overview of our current highest priorities 
can be stated simply. We must:
  --attack neurodegenerative disorders over the entire life span.
  --promote research on development of the immature nervous system and 
        on regeneration in the mature nervous system.
  --gain a greater understanding of synapses and circuits in the brain 
        to develop more effective therapies for disorders such as 
        epilepsy and chronic pain and to understand brain mechanisms 
        underlying normal cognition and memory loss.
  --understand the crucial supporting roles of glia and other non-
        neuronal cells in the normal brain and in disorders like brain 
        tumors and multiple sclerosis.
  --provide infrastructure support for the national neuroscience 
        enterprise, promote the distribution of crucial and currently 
        scarce resources, and expand clinical trials.
    The anatomical, physiological, and biochemical complexity of neural 
circuits challenges the ingenuity of scientists working on the brain. 
Fortunately, useful simplifications have emerged that bring order to 
observations previously thought to be unrelated and bring basic 
neuroscience closer to clinical application. For example, nerve cells 
in all species use the same mechanisms to generate signals. Likewise, 
similar molecules determine the birth, maturation and death of nerve 
cells in humans, monkeys, mice, flies, and worms. Lower organisms can, 
therefore, help elucidate mechanisms of human disease. Another 
simplification is that the same processes influence nerve cell death in 
seemingly different conditions. In both acute and chronic disorders 
many cells die by activating intrinsic ``cell suicide'' programs. If we 
can stop cell death in one condition, then the insights gained will, 
very likely, apply to other disorders as well.
    Molecular genetics is a unifying force in all biology. Because more 
than half of our genes are expressed in the brain, the potential 
contribution of genetics to understanding nervous system disorders is 
extraordinary. But I also want to stress that patterns of electrical 
activity, or, to use another word, ``experiences,'' play an enormously 
important role in shaping brain circuits. The interplay between genes 
and the environment reveals that circuits in the mature brain can 
change to a remarkable degree. This ``plasticity'' is the best hope for 
recovery of function following acute insults or during chronic disease. 
Genetically engineered neurotrophic factors, implantation of stem 
cells, and novel behavioral paradigms are therefore likely future 
therapies.
           parkinson's and other neurodegenerative disorders
    Parkinson's disease is marked by a characteristic ``resting'' 
tremor, a progressive slowing of voluntary movement, muscular rigidity, 
postural instability, and, in some cases, progressive dementia. This is 
a complex disorder, but there is a sense of renewed optimism with new 
surgical and medical therapies emerging. We are committed to supporting 
a vigorous and expanding program of research in Parkinson's disease and 
to moving toward full implementation of the Morris K. Udall Parkinson's 
Disease Research Act.
    NINDS now supports five clinical trials in Parkinson's disease, 
including implantation of cells that produce and release dopamine, a 
chemical neurotransmitter essential for the normal function of circuits 
that regulate voluntary movements. Another approach aims to surgically 
reduce the brain's overactive inhibition of movement. Other trials seek 
to slow the loss of dopamine containing neurons with drugs that 
minimize oxidative damage. This is a good beginning, but additional 
approaches are needed.
    In no area of medicine is the potential for harnessing human stem 
cells greater than in diseases of the nervous system. This year brought 
significant progress toward the development of neural stem cell 
therapies with encouraging results in animal models of Parkinson's 
disease. Scientific and ethical considerations must be addressed, but 
these early successes bring us closer to early trials in Parkinson's 
disease and other disorders.
    Surgical ablation of the globus pallidus is designed to restore the 
balance between brain circuits that initiate movement and other 
circuits that inhibit movement. A new study suggests that unilateral 
pallidotomy may be effective when medical therapy has failed. Patients 
are now being followed to see how long the benefits last. This success 
clearly shows that analysis of circuits as well as analysis of 
molecules and individual cells is crucial for progress in treating 
nervous system diseases.
    Another promising treatment for Parkinson's disease is chronic 
electrical stimulation delivered through electrodes implanted deep 
within the brain's movement control centers. The Food and Drug 
Administration has approved deep brain stimulation (DBS) for treatment 
of certain types of tremor. New evidence, mostly from Europe, suggests 
that DBS delivered to other brain movement centers can relieve more 
debilitating symptoms of Parkinson's disease, such as muscular rigidity 
and paucity of movement. There are tantalizing hints that DBS may even 
slow the progression of the disease. DBS emphasizes the importance of 
electrical activity on brain cells, and DBS may be useful for many 
other nervous system disorders.
    On other fronts, several labs are exploring new neurotrophic 
factors that have potent actions on dopamine nerve cells and novel 
agents that interrupt the enzyme cascade that leads to nerve cell 
suicide. Studies of inherited forms of Parkinson's disease, Alzheimer's 
disease, and ALS are also leading to crucial clues about the non-
inherited ``sporadic'' cases. Although most cases of these diseases are 
not inherited, the same pathways are probably involved. Findings in 
each neurodegenerative disease are informing studies of the others.
                           spinal cord injury
    Severed nerve cells in the central nervous system can be coaxed to 
regrow and reach toward their abandoned targets. However, the growth of 
axons (nerve fibers) is limited by inhibitory factors. After regrowth, 
the next challenge is to reconstruct the precise connections required 
for coordinated movement. In the spinal cord we now know that the 
disconnected circuits below the lesion remain intact. We plan a major 
effort to uncover factors that will facilitate regrowth of dormant 
nerve cell axons, and that will guide their ``recognition'' of correct 
target cells to reestablish control of local circuits in the spinal 
cord that are responsible for locomotion and other coordinated 
movements.
    To repair the injured adult spinal cord, reactivating the 
mechanisms that wire up the nervous system during early development 
will almost certainly be essential. We plan to develop novel funding 
mechanisms that bridge the gap that now seems to separate developmental 
neurobiologists from those interested in regeneration and 
rehabilitation. This effort may serve as a model for the back-and-forth 
interplay between basic and clinical studies that is needed as we move 
from treatment of symptoms toward cures.
                                epilepsy
    Seizures are caused by ``electrical storms'' in the brain, during 
which groups of nerve cells fire electrical impulses at a high rate and 
in synchrony. Here too genetics, circuits, electrical activity, and 
mechanisms of neuronal plasticity are emerging as unifying themes. In 
the coming year we will emphasize the opportunities that studying the 
genetics of affected families are uncovering for understanding and 
treating epilepsy.
    Defects in single genes cause more than 100 forms of epilepsy. In 
many cases, the ``disease genes'' encode proteins that generate the 
electrical impulses that carry information along and between nerve 
cells. These crucial proteins are the molecular switches that regulate 
the orderly flow of information in the nervous system. Each presents a 
target for developing new and better drugs. In the past year, 
scientists discovered a new class of mutations that lead to epilepsy. 
Genes have been discovered that influence the migration of neurons from 
where they are ``born'' in the embryonic brain to their proper places 
in the adult brain. When mutated, these genes cause global, 
catastrophic brain malformations or more subtle defects involving only 
small groups of neurons. The more subtle defects, revealed by new, high 
resolution brain imaging, are far more common than previously 
suspected, and may explain many seizures previously categorized as of 
unknown cause. As is the case for many inherited diseases, more than 
one gene may be involved in susceptibility to seizures. Epilepsy is an 
excellent place to begin a analysis of multigenic disorders. We are 
optimistic that the time is right to eliminate epilepsy rather than 
simply minimize the symptoms.
                                 stroke
    A new study suggested that more than 700,000 strokes occur each 
year in the United States, far more than previously suspected. Still, 
most people, especially the elderly who are at high risk, cannot 
identify the symptoms of stroke. These facts are particularly 
disturbing because NINDS t-PA clinical trials have shown that treatment 
within the first three hours of onset of a ``brain attack'' can improve 
the outcome. These treatments are costly, but, in the long run, they 
save money by reducing long-term disability. NINDS has mounted a large 
public education program geared at patients and physicians to improve 
early detection and treatment. We continue to search for new approaches 
for preventing stroke and for minimizing, or reversing, the damage that 
does occur.
                           clinical research
    Recognizing the opportunities cited above and many others, we have 
created a new division of Clinical Trials and Experimental Therapeutics 
within the NINDS extramural program to promote and guide our efforts. A 
critical issue in clinical research is the need for surrogate markers 
and early diagnostics. In neurodegernative disorders many nerve cells 
are already lost before the first obvious signs of disease are 
manifest. We must diagnose degenerative diseases earlier in their 
course to develop effective interventions. Expanded clinical research 
also depends on training a new and diverse generation of clinical 
investigators.
    Our goal is clear. We must cure or prevent all neurodegenerative 
disorders, acute and chronic, that affect infants, children, adults, 
and the elderly. We must reduce the devastating damage caused by 
disorders such as epilepsy and multiple sclerosis, not just mask the 
symptoms. We must learn to repair the damaged nervous system, not just 
halt degeneration. We must apply insights of modern brain science to 
the problems of mental life, from the emotional void of autism to the 
cognitive decline of aging. At the beginning of my career these goals 
were unattainable. Now they are within our reach.
    The activities of the NINDS are covered within the NIH-wide Annual 
Performance Plan required under the Government Performance and Results 
Act (GPRA). The fiscal year 2000 performance goals and measures for NIH 
are detailed in this performance plan and are linked to both the budget 
and the HHS GPRA Strategic Plan which was transmitted to Congress on 
September 30, 1997. NIH's performance targets in the Plan are partially 
a function of resource levels requested in the President's Budget and 
could change based upon final Congressional Appropriations action. NIH 
looks forward to Congress' feedback on the usefulness of its 
Performance Plan, as well as to working with Congress on achieving the 
NIH goals laid out in this Plan.
                                 ______
                                 
              Prepared Statement of Anthony S. Fauci, M.D.
    Mr. Chairman and Members of the Committee: I am pleased to present 
the President's budget request for the National Institute of Allergy 
and Infectious Diseases (NIAID) for Fiscal Year 2000. The President 
proposes that the NIAID receive $789.2 million, an increase of 2.4 
percent for NIAID non-AIDS research activities. Including the estimated 
allocation for AIDS research activities, total support proposed for the 
NIAID is $1.6 million, an increase of 2.4 percent over the comparable 
fiscal year 1999 appropriation. Funds for NIAID AIDS research efforts 
are included in the Office of AIDS Research budget request.
 domestic and global health: reducing the burden of infectious diseases
    A central goal of NIAID is to reduce the burden of infectious 
diseases, which remain the leading cause of death worldwide and the 
third leading cause of death in the United States. This is a daunting 
challenge since newly recognized diseases such as AIDS are superimposed 
on old foes such as malaria and tuberculosis, which continue to exact a 
huge toll. In today's world, the enormous volume of international 
travel and trade has largely erased the distinction between domestic 
and global health problems. Americans are vulnerable to infectious 
diseases that emerge anywhere in the world: a virulent strain of 
influenza virus, for example, could reach our shores in less than a day 
from virtually anywhere on the globe. A bioterrorist's attack could 
impact wide geographical areas; microbes do not stop at borders.
    Further compounding the problem of infectious diseases is the 
widespread emergence of drug-resistant pathogens. For example, the 
World Health Organization estimates that strains of the tuberculosis 
bacterium resistant to one or more drugs have infected up to 50 million 
people worldwide. Because of drug resistance, nearly 10 percent of 
invasive pneumococcal infections in the United States 1997 were 
untreatable with the three leading classes of antibiotics. Many other 
common diseases are increasingly resistant to standard drugs, including 
infections with common bacteria such as staphylococci, sexually 
transmitted diseases, and food-borne illnesses.
    Against this backdrop, the Institute's multi-faceted efforts in 
understanding disease-causing microbes and how they develop drug 
resistance, delineating the human immune response to pathogens, and 
developing new diagnostics, interventions and vaccines, are critical to 
our ability to address current microbial threats, as well as those that 
will inevitably emerge in the future.
                     hiv/aids in the united states
    Considerable progress has been made against one of the world's 
leading infectious causes of death, the human immunodeficiency virus 
(HIV), the cause of AIDS. In the United States, the number of new AIDS 
cases and AIDS-related deaths has dropped dramatically. Among people 
aged 25 to 44, AIDS is now the fifth leading cause of death; just three 
years ago it was the leading cause of death in this age group. The 
recent decline in HIV related mortality in the United States is due to 
several factors, particularly the increased use of potent combinations 
of antiHIV drugs. The development of 15 licensed antiretroviral drugs 
has been facilitated by NIAID-supported basic research on HIV and the 
immune system. In addition, many of the pivotal clinical trials of 
these medications have been conducted within the NIAID network of 
clinical trials programs.
    Despite the improved prognosis for HIV infected individuals in the 
United States and other western countries, it is essential that we not 
become complacent with regard to the HIV/AIDS epidemic. The rate of new 
HIV infections in the United States approximately 40,000 per year 
continues at an unacceptably high level. In addition, many HIVinfected 
individuals have not responded adequately to currently available 
antiHIV drugs, cannot tolerate their toxicities and side effects, or 
have difficulty adhering to complex dosing schedules.
    These realities underscore the importance of NIAID's ongoing 
research into learning more about the HIV disease process and 
developing the next generation of antiretroviral therapies, including 
those aimed at targets in the viral replication cycle not addressed by 
current therapies.
                  aids vaccine and prevention research
    Elsewhere in the world, the HIV epidemic continues to accelerate, 
notably in sub-Saharan Africa, Asia, the Indian sub-continent, and 
certain countries in the former Soviet Union. The expansion of the 
epidemic in the developing world, where expensive anti-HIV drugs are 
beyond reach of all but the privileged few, underscores the urgent need 
for a safe and effective HIV vaccine. A sustained commitment to basic 
and applied HIV vaccine research is critical, as is the further 
development of topical microbicides and other approaches to HIV 
prevention.
    As part of the NIAID effort in HIV vaccine development, the 
Institute has awarded more than 100 grants in a special program that 
fosters innovative research on HIV vaccines. Many novel approaches to 
an HIV vaccine are now being pursued, including vectored vaccines, 
which employ harmless viruses engineered to carry genes encoding one or 
more HIV proteins. Phase I and Phase II studies of this approach in the 
United States have yielded promising results. The Institute also is a 
partner in the NIH Vaccine Research Center (VRC), a new program 
involving NIH scientists with expertise in immunology, virology and 
vaccine development.
                           genomic sequencing
    Genomic sequencing technology has revolutionized medical research 
and is intimately linked to the Institute's mission. Although this 
technology is most often associated with the Human Genome Project, it 
is less widely known that numerous projects are underway to sequence 
the genomes of disease-causing microbes. These initiatives promise to 
speed vaccine and drug development, as well as to facilitate studies of 
disease pathogenesis and drug resistance. In 1998 alone, NIAID-
supported researchers reported the complete genomic sequence of three 
important pathogens: the agents of chlamydia, syphilis and 
tuberculosis, as well as the sequence of one of the chromosomes of the 
malaria parasite Plasmodium falciparum. Significantly, no good vaccine 
exists for these four diseases. The new genomic sequence data promises 
to provide important insights regarding the components of these 
organisms that might be incorporated into candidate vaccines.
                         niaid malaria research
    Malaria is one of the most devastating emerging and re-emerging 
diseases. It claims 1.5 to 2.7 million lives each year in tropical and 
subtropical regions of the world, according to the World Health 
Organization (WHO). Every 30 seconds, a child dies of malaria. As a 
partner in the Multilateral Initiative on Malaria (MIM), NIH is facing 
the challenges of malaria with laboratory, fieldbased and clinical 
research efforts within the NIAID intramural research program in 
Bethesda, Md., at grantee institutions elsewhere in the United States, 
and in collaboration with foreign colleagues in Africa, Asia, South 
America, and the Pacific region. In this endeavor, we and our 
colleagues in the MIM have an important new ally, World Health Director 
General Dr. Gro Harlem Brundtland, who recently launched the ambitious 
``Roll-Back Malaria'' program.
                          vaccine development
    The importance of vaccines in the control of infectious diseases 
cannot be overstated--they provide safe, cost effective and efficient 
means of preventing illness, disability and death from these diseases. 
Indeed, vaccines are the only human interventions that have actually 
eradicated diseases: the last case of smallpox anywhere on earth 
occurred in 1977, and polio has been eradicated from the western 
hemisphere, the western Pacific region, and virtually all of Europe. 
The complete elimination of polio, and perhaps other vaccine-
preventable diseases, is within our grasp.
    Each of the core scientific disciplines of NIAID--immunology, 
microbiology and infectious diseases--contributes to the development of 
new vaccines. Progress in basic research as well as technical advances 
have created opportunities for improving the safety and efficacy of 
existing vaccines as well as for developing vaccines for diseases for 
which no vaccines are currently available.
                       rotavirus vaccine licensed
    NIAID intramural research spanning 25 years recently culminated in 
the licensure of a vaccine against rotavirus, a leading cause of life-
threatening childhood diarrhea. Widespread use of the rotavirus vaccine 
promises to reduce the 160,000 emergency room visits and 50,000 
hospitalizations necessitated by rotavirus infections each year in this 
country, according to the Centers for Disease Control and Prevention 
(CDC). Global use of the vaccine could significantly lessen the impact 
rotavirus diarrhea, which affects 130 million infants and children each 
year, resulting in more than 870,000 deaths, according to the WHO.
          conjugated hib vaccines: a continuing success story
    Another notable success in vaccinology is the development of 
conjugated vaccines to protect children under two years of age from 
Haemophilus influenzae type B (Hib), a microbe which can cause 
meningitis, deafness and mortality in young children. The success of 
Hib conjugate vaccines has been extraordinary: more than 35 countries 
have followed the lead of the United States and adopted these vaccines 
into their immunization programs, cutting the incidence of invasive Hib 
disease to negligible levels wherever the vaccine has been used. In the 
United States only 258 cases of invasive Hib disease among children 
younger than 5 years were reported in 1997, a 97-percent reduction from 
1987. The Children's Vaccine Initiative has estimated that conjugated 
Hib vaccines, if used routinely and in the same proportion of+ children 
as other childhood vaccines, could prevent about 70 percent of the 
estimated 400,000 annual Hib-related deaths worldwide.
                     tuberculosis vaccine research
    Last year, TB claimed the lives of nearly 3 million people, more 
than any other single infectious disease, according to the WHO. 
Clearly, an effective TB vaccine is needed, as well as new 
therapeutics. The Institute is working to develop a TB vaccine with a 
twotiered approach: basic research into the pathogenesis of the disease 
and the host immune response to infection with the TB bacterium; and 
applied research into vaccine candidates. Several experimental vaccine 
approaches appear promising, and the NIAID recently joined forces with 
public and private sector health agencies to formulate a ``blueprint'' 
to speed TB vaccine development.
                responding to the threat of bioterrorism
    Recent terrorist attacks such as those in New York, Oklahoma City 
and Tokyo, the uncovering of advanced biological weapons in Iraq and 
the former Soviet Union, and other events have reinforced the urgent 
need to prepare for possible biological attack. As recently articulated 
by President Clinton, the NIH and NIAID have a central role is 
countering the threat of bioterrorism. The Institute has developed a 
bioterrorism research plan that consists of basic research into the 
pathogenesis and genetics of organisms which might be used in 
bioweapons, as well as the development of techniques for rapid 
identification of natural and bioengineered microbes, new therapies 
against these microbes, and vaccines to prevent infections with these 
agents. Our efforts are focused on four organisms known to be potential 
agents of bioterrorism: smallpox, anthrax, tularemia and plague. 
Important initiatives include collaborative research with the 
Department of Defense to identify antiviral drugs with the potential to 
treat or cure smallpox infections, and efforts to develop an improved 
anthrax vaccine.
                 new approaches to immunologic diseases
    The immune response is central to human health. However, the immune 
system can go awry, as in the case of autoimmune diseases, in which a 
person's immune system targets their own organs or tissue. 
Collectively, autoimmune diseases afflict several million Americans, an 
estimated five percent of the population. The human and financial 
burden of these diseases is immense. To address the problem of 
autoimmune diseases, a trans-NIH working group has develop cross-
cutting initiatives to address various aspects of autoimmunity, 
including the roles of environmental, infectious and genetic factors in 
these diseases, as well as innovative therapies such as stem cell and 
islet cell transplantation. An important area of emphasis is the 
induction of tolerance. By blocking only those components of the immune 
system that attack healthy tissues, it may be possible to treat 
autoimmune diseases while avoiding immunosuppressive drugs that dampen 
not only the deleterious immune response, but also responses needed to 
protect a person from infections and cancers.
    In addition to its applications in autoimmunity, tolerance 
induction holds extraordinary promise in transplantation biology. 
Researchers have shown that novel approaches to tolerance induction 
allow long-term, rejection free survival of transplanted kidneys and 
insulin-producing islet cells in monkeys, without immunosuppressive 
drugs. A comprehensive NIAID tolerance research plan has been developed 
to identify research gaps and opportunities, and to outline areas of 
future basic and clinical research in autoimmunity, transplantation, 
asthma and allergic diseases.
                               conclusion
    The activities of NIAID are covered within the NIHwide Annual 
Performance Plan required under the Government Performance and Results 
Act (GPRA). The fiscal year 2000 performance goals and measures for NIH 
are detailed in this performance plan and are linked to both the budget 
and the HHS GPRA Strategic Plan which was transmitted to Congress on 
September 30, 1997. NIH's performance targets in the Plan are partially 
a function of resource levels requested in the President's Budget and 
could change based upon final Congressional Appropriations action. NIH 
looks forward to Congress' feedback on the usefulness of its 
Performance Plan, as well as to working with Congress on achieving the 
NIH goals laid out in this Plan.
    The Institute is poised to take advantage of unprecedented 
scientific opportunities in immunology, microbiology and infectious 
diseases. With a strong research base, talented and committed 
investigators, and the availability of powerful new research tools, 
NIAID looks to the new millennium with confidence that new advances 
that will have significant impact on the health of our nation and the 
world are within our grasp.
                                 ______
                                 
                Prepared Statement of Dr. Marvin Cassman
    Mr. Chairman and Members of the Committee: The President in his 
fiscal year 2000 budget has proposed that the National Institute of 
General Medical Sciences (NIGMS) receive $1.194 billion, an increase of 
$28 million over the comparable fiscal year 1999 appropriations. 
Including the estimated allocation for AIDS, the total support proposed 
for NIGMS is $1.227 billion, an increase of $29 million over the fiscal 
year 1999 appropriation. Funds for NIGMS efforts in AIDS research are 
included within the Office of AIDS Research budget request.
    I am pleased to present to you the programs of the National 
Institute of General Medical Sciences (NIGMS). The NIGMS mission is to 
support basic biomedical research that is not targeted to specific 
diseases, but that increases understanding of life processes and lays 
the foundation for advances in disease diagnosis, treatment, and 
prevention. The Institute also has a major role in training the next 
generation of scientists. As part of this effort, we attempt to ensure 
that biomedical research has access to the broadest possible 
intellectual resources in our society, through programs that provide 
research and training support for underrepresented minorities.
                              a look back
    I would like to begin by describing two important recent research 
advances that illustrate the long-term nature of the research we 
support, the way in which it often draws from observations made in a 
number of different organisms, and the speed with which many of these 
fundamental studies become relevant to the human condition.
    The first advance involves an essential component of the cell, 
called the microtubule. Microtubules are long, stiff structures that 
extend through the cell [Figure 1] and are involved in such key 
functions as cell division and the movement of material within the 
cell. An understanding of the structure and function of the microtubule 
has been a major scientific goal for several decades.
    Recently, investigators supported by NIGMS have determined the 
three-dimensional structure of the units that make up the microtubules, 
called tubulin. Of particular interest is the fact that the anti-cancer 
drug, Taxol, acts by binding to tubulin. The location of the Taxol on 
the tubulin molecule is clearly visible in this structure. The 
identification of the binding site for Taxol will help in developing 
new anti-cancer drugs.
    This very important structure was determined by a relatively novel 
technique. Since tubulin spontaneously aggregates into very large 
sheets, the usual methods for detailed structure determination, X-ray 
diffraction and nuclear magnetic resonance, could not be used. Instead, 
the researchers used a powerful variant of electron microscopy, which 
is increasingly being applied to the analysis of large, complex 
structures. Development of this tool has been supported by NIGMS for 
more than two decades, and is now coming to fruition in this and other 
research areas.
    A second major research advance is in the understanding of one of 
the most pervasive and, until recently, least understood aspects of 
biological systems, the circadian rhythm. This pattern of activity, 
with a periodicity of about 24 hours, appears to be present everywhere 
one looks, from plants to yeast to fruit flies to humans. Disruption of 
the biological clock is most apparent in the sleep disorders that 
accompany jet lag, but the clock almost certainly plays a fundamental 
role in the normal physiology of living organisms. Although studies on 
the molecular basis of circadian rhythms have been underway for at 
least 30 years, the last 18 months have yielded an explosion of 
information on the way that cellular clocks operate. The general 
mechanism looks quite simple at this point, although the simplicity is 
undoubtedly deceiving, and much yet remains to be learned [Figure 2]. 
This simple model shows a feedback loop, where a pair of proteins (the 
PAS proteins) stimulates the synthesis of the clock proteins. As these 
increase in concentration, they prevent the PAS proteins from promoting 
their synthesis, and the concentration of the clock proteins drops. A 
new cycle is then initiated. The timing of this cycle of synthesis, 
inhibition, and renewal determines the period of the cellular clock.
    It is striking that very similar proteins exist in all the 
organisms studied, from yeast to mammals. This similarly also extends 
to one of the mechanisms by which the cycle is triggered, that is, the 
response to light. Recently, three NIGMS-supported research teams have 
identified the way the cells respond to light to modulate this cycle. 
Again, it is striking that the photoreceptor is the same in the plant 
model, in fruit flies, and in mice.
                              a look ahead
    I would like to spend the rest of my time dealing not with the 
past, but with the future. However, there are certain common features 
that have led to the successes of the past, and that we will continue 
to emphasize in the future. The two examples I just gave demonstrate 
many of these features. The application of novel technologies, the use 
of detailed structural information to understand the ways that drugs 
work, the use of model systems to understand fundamental biological 
processes, and the application of genomic information to identify 
proteins with common functions in different organisms, as was done in 
the studies of biological clocks, are common events in many new 
discoveries. Another common denominator is the availability of stable, 
long-term support to allow the resolution of difficult research 
problems. Finally, these research advances all emerged from peer-
reviewed, investigator-initiated, individual research grants.
    Recent discussions with advisory groups have also identified a 
number of new approaches with significant potential payoffs. Most 
prominently, there was widespread agreement on the need to help support 
significantly broader collaborative interactions than have been the 
norm to this time; on the need for access to a broad array of 
technologies; and on the need for the incorporation into basic research 
of quantitative disciplines such as mathematics, engineering, physics, 
and computer science. We have developed, together with our Advisory 
Council and other groups, an extensive group of initiatives reflecting 
these needs. Given the time available, I will only discuss two of these 
in detail.
    Voltaire complained that doctors poured drugs of which they knew 
little to cure diseases of which they knew less into human beings of 
which they knew nothing. Since then, we have learned a great deal about 
drugs and diseases, but much less about the humans who are being 
treated. Our new pharmacogenetics initiative is designed to address 
this gap in understanding. Pharmacogenetics is the study of differences 
between individuals in the response to drugs, using the tools of 
genetics.
    An example of what is involved is shown in the next figure [Figure 
3]. This is the result of a study by an NIGMS investigator showing that 
the response to an anti-leukemia drug can vary significantly among the 
treated population. The drug is not only therapeutic, but it can be 
toxic if it remains in the system too long. In most people, it is 
rapidly degraded, and the doses are balanced to provide the maximum 
benefit and the minimum toxicity. However, in a small number of 
individuals the drug is very poorly degraded, and the results can be 
fatal. The study showed that the differences in response came from the 
variation in a gene for a specific enzyme that is involved in the 
degradation of the drug. Because this is now understood, a simple blood 
test can determine the appropriate drug levels for this treatment.
    We would like to expand our ability to identify such differences 
between individuals and thus provide the most appropriate treatments. 
Consequently, we are planning to support the development of a network 
of multidisciplinary research groups to identify the functional 
variations in genes and enzymes that determine drug responses. At the 
same time, we will create a pharmacogenetic database in which to store, 
analyze, and access the information for future applications. As I noted 
above, access to research tools is essential for further progress, and 
we believe that the database I have described will be an important tool 
for pharmacologists and scientists generally.
    The second initiative I want to describe builds on the 
extraordinary possibilities presented to us by the complete 
understanding of genomes, both the human genome and those of other 
organisms. Our goal at NIGMS is to arrive at a complete understanding 
of how cells function. Knowledge of the genes is the indispensable 
starting point, since they determine and regulate the production of the 
proteins that conduct the cell's business. The next step is to 
understand how these proteins function, and, as I demonstrated in the 
example of tubulin, this is tightly linked to an understanding of 
structure. As shown in the next figure [Figure 4], we propose to 
systematically analyze families of proteins to get a reasonably 
complete catalog of all the representative protein structures. We 
expect this to provide many benefits for investigators who are 
conducting research on the relationship of protein structure to 
function, including an understanding of the way aberrant proteins 
result in disease.
    This initiative is the result of workshops and planning meetings 
over more than a year, involving several agencies (most notably the 
Department of Energy) and representatives of the scientific community, 
including scientists from both Europe and Japan. We expect to develop 
this effort as a close inter-agency and international collaboration.
    Last, but hardly least, the evolution of the biological sciences 
continues to require the incorporation of new skills in the training of 
investigators. We have initiated new programs to bring into biology 
investigators with training in quantitative disciplines; to provide 
support for outstanding physician-scientists to be trained in research 
in the areas of anesthesiology, clinical pharmacology, and trauma and 
burn injury; and to help postdoctoral trainees improve their teaching 
skills by combining a traditional research experience with mentored 
teaching at a minority-serving institution. We expect these and other 
initiatives to greatly improve and expand the capabilities of our 
researchers, to develop new areas of science, to broaden and enhance 
training opportunities, and to stimulate the entry of underrepresented 
minorities into basic biomedical research.
    The activities of the NIGMS are covered within the NIH-wide Annual 
Performance Plan required under the Government Performance and Results 
Act (GPRA). The fiscal year 2000 performance goals and measures for NIH 
are detailed in this performance plan and are linked to both the budget 
and the HHS GPRA Strategic Plan which was transmitted to Congress on 
September 30, 1997. NIH's performance targets in the Plan are partially 
a function of resource levels requested in the President's Budget and 
could change based upon final Congressional Appropriations action. NIH 
looks forward to Congress' feedback on the usefulness of its 
Performance Plan, as well as to working with Congress on achieving the 
NIH goals laid out in this plan.
                                 ______
                                 
               Prepared Statement of Dr. Duane Alexander
    Mr. Chairman and Members of the Committee: I am pleased to present 
the fiscal year 2000 President's budget request for the National 
Institute of Child Health and Human Development (NICHD) of $694.1 
million, an increase of $16.2 million or 2.4 percent over the 
comparable fiscal year 1999 appropriation. Including the estimated 
allocation for AIDS, the total support proposed for NICHD is $771.7, 
million an increase of $18.1 million over the comparable fiscal year 
1999 appropriation. Funds for NICHD efforts in AIDS research are 
included within the Office of AIDS Research budget request.
    The activities of the NICHD are covered within the NIH-wide Annual 
Performance Plan required under the Government Performance and Results 
Act (GPRA). The fiscal year 2000 performance goals and measures for NIH 
are detailed in this performance plan and are linked to both the budget 
and the HHS GPRA Strategic Plan which was transmitted to Congress on 
September 30, 1997. NIH's performance targets in the Plan are partially 
a function of resource levels requested in the President's Budget and 
could change based upon final Congressional Appropriations action. NIH 
looks forward to Congress' feedback on the usefulness of its 
Performance Plan, as well as to working with Congress on achieving the 
NIH goals laid out in this Plan.
    The National Institute of Child Health and Human Development seeks 
to assure that every individual is born healthy, is born wanted, and 
has the opportunity to fulfill his or her potential for a healthy and 
productive life unhampered by disease or disability. In pursuit of this 
mission, the NICHD conducts and supports laboratory, clinical, and 
epidemiological research on the reproductive, neurobiologic, 
developmental, and behavioral processes that determine and maintain the 
health of children, adults, families, and populations.
    The beginning of the 21st century is an occasion to measure our 
accomplishments and look forward to promising opportunities. We can 
look back with a sense of pride on our research achievements that allow 
us to leave behind many disease and disability burdens that have 
affected the lives of children and adults throughout most of the 20th 
century. For example:
    Infant mortality has been reduced by 70 percent since the NICHD was 
established 35 years ago, largely due to NICHD research that has led to 
new ways to treat and prevent respiratory distress syndrome, manage 
premature infants, and prevent Sudden Infant Death Syndrome or SIDS.
    Infertility that left millions of couples unable to have children 
of their own during much of the last century is no longer a hopeless 
sentence, thanks to NICHD research that provides couples with a wide 
range of techniques to diagnose the causes of infertility, and numerous 
options to help them have their own children.
    A number of causes of mental retardation including Hemophilus 
influenzae type b (Hib) meningitis, phenylketonuria (PKU), congenital 
hypothyroidism, jaundice, measles, and rubella have become relics of 
the last century due to research discoveries that prevent or correct 
these conditions. (See attached chart.)
    The social isolation and mistreatment of persons with mental 
retardation and physical disabilities has been greatly diminished by 
NICHD research. Through improved ways to teach, manage behavior, 
increase mobility, and remove barriers, changing attitudes have enabled 
people with disabilities to actively participate in our communities, 
including attending our schools and contributing to the workforce.
    Many more children born to women infected with HIV will now enter 
the 21stcentury free of this virus as a result of research that has 
reduced the rate of virus transmission from mother to infant from 25 
percent to 2 percent.
                        new research challenges
    As we leave behind some of the most feared disorders of the 20th 
century, many others remain unsolved, and some new conditions threaten 
our people.
    At least 30 percent or 15 million of our nation's children fail to 
develop adequate reading skills for functioning in a literate society. 
Our poor and minority children are at the greatest risk. NICHD 
scientists have developed successful, research-based interventions that 
appear to markedly reduce the rate of reading failure. Scientists 
supported by the NICHD are applying and testing these methods in many 
locations, including nine public schools in Washington, D.C. After only 
one year, data indicate that reading failures have been significantly 
reduced at all participating schools.
    While the rate of SIDS deaths has been cut nearly in half during 
the four years of the NICHD Back to Sleep campaign, the rate has not 
declined equally in all segments of society. African American and 
Native American babies are still more likely to die from SIDS. To 
address SIDS in minority and high risk communities, the NICHD has 
enlisted Surgeon General Dr. David Satcher and others to help reach 
these populations. We have also initiated a major outreach to child 
care centers, urging caretakers to place babies on their backs to sleep 
to help reduce the risk of SIDS.
    Last year the NICHD, in collaboration with other NIH components, 
established the Women's Reproductive Health Research Career Development 
Centers. These 12 innovative programs will support the development of 
obstetrician-gynecologists to do basic, translational, and clinical 
research relevant to women's health, and to transfer clinical 
innovations to their colleagues in the profession. We will support an 
additional eight research centers with funds provided in fiscal year 
1999.
    With the increased funding in fiscal year 1999, the NICHD has also 
expanded its Pediatric Pharmacology Research Unit Network from 7 to 13 
sites. These sites will play an increasingly important role in the 
health of children by quickly and safely obtaining the clinical data 
required for approved pediatric use of drugs. The Network also will be 
conducting research on genetic differences in drug metabolism in 
children as a way to make drugs safer for them.
                          research discoveries
    As we approach the 21st Century, NICHD research has sparked 
important discoveries that hold the promise of healthier lives for 
children as well as adults.
    In a new study, NICHD scientists found that pregnant women infected 
with HIV can reduce the risk of transmitting the virus to their infants 
by 50 percent if they deliver by elective cesarean section before labor 
and rupture of their membranes. This finding contributes to the growing 
body of knowledge on preventing HIV transmission from mother to child.
    Another important discovery may give women a new way to control 
their fertility without unwanted, harmful side effects. In a study 
using mice and rats, NICHD-supported scientists used inhibitors of 
enzymes in cells surrounding an egg in the ovary to prevent the egg 
from maturing, without disturbing other events in the female cycle. 
Because the eggs could not mature, they could not be fertilized. Future 
work will attempt to translate this advance into a product that will 
give women new opportunities to have children when they are wanted.
    When women do give birth, new NICHD research has provided evidence 
that women who receive epidural anesthesia during labor and delivery do 
not have an increased rate of cesarean deliveries. This evidence allows 
women to choose epidural anesthesia for delivery without fear that it 
may increase their chance of cesarean section.
    In the important area of medical rehabilitation research, NICHD-
supported scientists have developed an improved prosthetic device that 
can restore hand function to both child and adult amputees. This 
prototype hand works by sensing the user's muscular contractions and 
moving the mechanical fingers in response. Early testing shows that the 
device is sensitive enough to permit limited piano playing.
    One of the more exciting research discoveries involved new cloning 
techniques. In the first accomplishment of its kind, scientists have 
demonstrated that cloning mammals from adult cells could be 
accomplished repeatedly in mice. This extraordinary advance will enable 
researchers to answer many basic questions about how cells are 
programmed during normal and abnormal development. These newest cloning 
techniques can have a variety of applications. They can improve the 
breeds of livestock, eventually help derive therapeutic products, and 
may also help preserve rare and endangered species.
                  new initiatives for fiscal year 2000
    The beginning of a new century is also a time to look forward to 
new scientific frontiers. Urinary incontinence affects millions of 
adults and nearly twice as many women as men. Through original work 
under a Small Business Innovation Research (SBIR) grant, investigators 
have developed a new approach to correct ``stress incontinence.'' This 
condition often occurs in women due to a weakening of the muscles 
during pregnancy or childbirth, or after a woman enters menopause. A 
recent discovery holds tremendous promise for restoring independence 
and improving the quality of life for millions of women. Using DNA 
technology, scientists injected special polymers around the urethra and 
effectively strengthened the damaged muscles found in patients with 
stress incontinence. Building on this advance, the NICHD, in 
collaboration with other Institutes, is supporting research to address 
a series of conditions termed pelvic floor disorders. Incontinence and 
pelvic organ prolapse are the most common conditions. The major factor 
for the development of these disorders in women is vaginal delivery. 
Our research will lead to a better understanding of the effects of 
vaginal delivery and the specific aspects of the labor and delivery 
process that adversely affect the pelvic floor.
    Birth defects remain the leading cause of infant mortality in this 
country. Tremendous knowledge gaps exist in understanding birth defects 
and how to prevent them. To bridge these gaps, the NICHD is 
significantly expanding its birth defects research. We will capitalize 
on the revolutionary discoveries of the Human Genome Project and 
extraordinary advances in molecular and developmental biology. 
Researchers will identify target genes, environmental factors, genetic 
susceptibilities, and interactions between a gene and its environment. 
This information should provide the basis for diagnosing, treating, and 
preventing a wide range of birth defects.
    Every year, thousands of children from homes where Spanish is the 
primary language spoken enter school and struggle to read in English. 
We do not have sound experimental evidence from the classroom 
indicating the most effective way to teach English reading skills to 
Spanish-speaking children. For instance, we do not know if these 
children should first be taught to read in Spanish, and then in 
English, nor do we know the best time to make the transition from one 
language to another. Building upon NICHD's successful research-based 
program to teach reading skills to English-speaking children, we will 
work with the U.S. Department of Education on a similar research 
program to determine the most successful ways to help Spanish-speaking 
children learn to read English.
    Recently, the NICHD sponsored a consensus development conference on 
the rehabilitation of persons with traumatic brain injury (TBI). Long-
term behavioral consequences remain a serious problem after TBI, and 
deficits in cognition, memory, and attention often result. 
Rehabilitation to help these individuals return to work, school, and 
society is costly, complicated, and often of limited success. Based on 
conference recommendations, a new NICHD initiative will support 
research applying brain imaging techniques to correlate injury with 
outcomes of neuropsychological testing and various rehabilitation 
approaches. The goal of this research will be to develop new drug or 
behavioral strategies to help rehabilitate persons with TBI. Plans are 
also under way for a TBI clinical trials network to develop and conduct 
multi-center studies of therapeutic techniques and procedures, as well 
as devices and drugs that improve the health-related function of 
persons with TBI.
    The research supported by NICHD addresses some of the most 
important health and development problems facing our children and 
families.
                                 ______
                                 
                 Prepared Statement of Dr. Carl Kupfer
    I am pleased to present the President's fiscal year 2000 budget 
request for the National Eye Institute (NEI) a sum of $396 million, an 
increase of $9.3 million (or 2.4 percent) above the comparable fiscal 
year 1999 appropriation. Including the estimated allocation for AIDS 
research within the Office of AIDS Research budget request, total 
support proposed for the NEI is $406.5 million, an increase of $9.5 
million (or 2.4 percent).
    The NEI's research emphasis continues to be directed toward 
discovering ways to prevent, delay, and treat a wide spectrum of eye 
diseases and disorders. These include retinal diseases, such as age-
related macular degeneration (AMD) and retinitis pigmentosa; corneal 
diseases; and myopia and other refractive disorders. We are working 
with other NIH institutes to address the serious health complications 
of diabetes, autoimmune diseases, and diseases of the brain. Our 
research initiatives have the full support of the entire eye and vision 
research community.
                         retinal degenerations
    The retina, the light-sensitive tissue in the back of the eye, is 
susceptible to a variety of diseases that can lead to visual loss or 
blindness. These diseases include AMD, retinitis pigmentosa, and 
diabetic retinopathy.
    Age-related macular degeneration is the leading cause of visual 
loss in older adults and has an increasingly important social and 
economic impact in the United States. Although NEI-sponsored clinical 
trials have demonstrated that laser treatment reduces the extent of 
vision loss from the less common ``wet'' form of the disease, there are 
currently no effective treatments for the vast majority of patients 
with AMD who have the ``dry'' form of the disease. Figure 1 shows a 
cross-section of the eye. Figure 2 shows what an eye care professional 
might see when looking into the interior of a normal eye through a 
special instrument. Figure 3 shows changes in the eye resulting from 
AMD. Figure 4 depicts what a person with normal vision sees, and Figure 
5 shows the visual disability of a person with AMD.
    The NEI is supporting scientists across the country who are 
determined to find ways to prevent, delay, or perhaps cure AMD. Three 
major AMD clinical trials are being supported this year by the NEI. The 
first is the Complications of Age-Related Macular Degeneration 
Prevention Trial. This trial will assess the safety and effectiveness 
of laser treatment in preventing vision loss among patients at high-
risk for AMD. The second--a set of multicenter clinical trials called 
the Submacular Surgery Trials--will determine whether surgical removal 
of abnormal blood vessels beneath the macula can stabilize or improve 
vision for people with AMD. The third clinical trial is being conducted 
as a component of the Age-Related Eye Disease Study. This research 
program is designed to determine whether vitamins and minerals affect 
the development of either AMD or cataract.
    Research is also being directed toward identifying genes that 
contribute to the development of AMD. Techniques of molecular genetics 
allow scientists to examine ``candidate'' genes to determine whether 
mutations occur with a higher frequency in persons affected by AMD than 
in unaffected persons. Finding a genetic basis for AMD will increase 
our understanding of the cause of this disease and assist in developing 
new treatments or methods of prevention.
    Retinitis pigmentosa is a group of inherited retinal degenerative 
diseases characterized by the progressive destruction of light sensing 
cells called photoreceptors. Figure 6 shows the severe visual 
disability of a person with retinitis pigmentosa. Researchers supported 
by the NEI are working to identify the genes involved in retinitis 
pigmentosa and related retinal degenerative diseases as well as 
exploring new potential therapeutic strategies, such as tissue and cell 
transplantation and new drugs. NEI intramural scientists have, for 
example, identified a specific protein that has been shown to play an 
important role in vitamin A metabolism in the retina. Other NEI- 
supported investigators have recently demonstrated that mutations in 
this gene are associated with Leber's congenital amaurosis, a disorder 
characterized by blindness at birth, and retinal degenerative changes. 
The development of a mouse model for this disorder bodes well for rapid 
progress.
                                diabetes
    According to ``Diabetes in America,'' published by the National 
Institute of Diabetes and Digestive and Kidney Diseases, about 16 
million people in the United States have diabetes, which is the leading 
cause of blindness in working-age adults. Blindness is the only 
complication of diabetes that can be prevented. A series of clinical 
trials supported by the NEI during the last two decades demonstrated 
that less than five percent of all people with diabetes need to lose 
their vision if the treatment recommendations from the clinical trials 
are followed. Despite this success, intensive research continues on 
finding improved methods to prevent these complications. Research 
opportunities are discussed in the recommendations of the 
Congressionally- mandated report of the Diabetes Research Working 
Group.
                   health disparities and minorities
    Eye care problems in our country's minority populations need to be 
better understood. The NEI is supporting several studies designed 
specifically to address eye disease in underserved populations. For 
example, Hispanics are the fastest growing minority population in the 
US. According to ``Diabetes in America,'' a high percentage about 9.6 
percent of the Mexican-American population have diabetes. Yet, the 
absence of data on visual impairment for Hispanics in the United States 
hampers the development of appropriate eye health services. Because of 
this, the NEI is supporting research to determine the prevalence and 
cause of blindness and visual impairment in 4,500 Mexican Hispanics 
over age 40 residing in Arizona and in 6,000 Mexican Hispanics residing 
in an urban Los Angeles neighborhood. This information will provide 
evidence of the burden of visual impairment and blindness in the 
Mexican Hispanic community and serve to direct resources appropriately 
toward the major eye health needs in this population.
    Glaucoma is three to four times as common in Blacks as in Whites, 
and blindness from glaucoma is six times as common in Blacks than in 
Whites. Last year, an NEI- supported investigation found that Blacks 
and Whites with advanced glaucoma respond somewhat differently to two 
surgical treatments for the disease. Scientists found evidence to 
suggest that Blacks with advanced glaucoma may benefit more from a 
regimen that begins with laser surgery, while Whites may benefit more 
from one that begins with an operation called a trabeculectomy.
                            corneal disease
    The cornea is the transparent tissue at the front of the eye that 
helps direct incoming light onto the retina. Good vision depends on a 
clear and transparent cornea. Recent NEI-funded research has led to 
great progress in understanding and treating corneal disorders. For 
example, researchers have established an effective treatment for a 
particularly painful corneal disease--herpes of the eye. This virus can 
produce a painful sore on the surface of the eye and cause inflammation 
of the cornea. Scientists found that long-term treatment with the anti-
viral drug acyclovir, given by mouth, reduced by 41 percent the 
probability that any form of herpes of the eye would recur in patients 
who had the infection in the previous year. This is a major step 
forward for people with the nearly 50,000 new and recurring cases of 
herpes of the eye diagnosed each year in the United States, according 
to an article in ``Archives of Ophthalmology.''
                                 myopia
    About 60 percent of the American population have refractive 
errors--that is, they need eyeglasses or other corrective measures to 
see better. Myopia, or nearsightedness, is a common condition in which 
images of distant objects appear blurry. Concerted efforts in a number 
of laboratories over the past two decades have led to the realization 
that myopia begins in early life and raises the possibility that it can 
be prevented or reversed with early detection and intervention. Recent 
observations have identified specific visual performance problems that 
put a child at high risk for the development of myopia. New methods for 
the clinical treatment of myopia and other refractive disorders in 
humans are now being tested in several clinical trials.
    One of these trials that the NEI is conducting is evaluating 
whether the use of special spectacle lenses can slow the progression of 
myopia in young children. Studies such as these suggest the real 
possibility of effective approaches to prevent or slow down the 
progression of myopia.
    Future vision research with emerging technology holds great promise 
for understanding the development and normal function of the visual and 
neural systems. Progress in the diagnosis and treatment of clinical 
disorders that impair vision, such as amblyopia, nystagmus, and 
strabismus, depends on this research.
                          autoimmune diseases
    Little is known about the factors that determine susceptibility of 
the visual system to autoimmune diseases. The NEI's research program is 
actively investigating the cause of a number of autoimmune diseases. 
These include uveitis, a potentially blinding eye condition, and dry 
eye, which is a symptom of Sjogren's syndrome. Dry eye is more common 
in women, especially after menopause.
    NEI investigators are pioneers in a new approach called oral 
tolerance therapy for treating patients with presumed autoimmune 
disorders. Researchers at the NEI discovered a protein from the eye 
that, when administered orally, allows people with uveitis to stop 
taking, or reduce dependence on, toxic drug therapy. Additional studies 
are using oral tolerance therapy to treat other inflammatory eye 
diseases. The NEI is also an active participant in several trans-NIH 
initiatives on autoimmunity.
                               low vision
    It is important to emphasize that as the size of the older adult 
population increases, the number of people with visual impairment from 
AMD and other aging-related diseases will increase. About one in eight 
Americans is now 65 or older, according to the US Census Bureau. When 
you add declining mortality rates and population demographics, such as 
the ``baby boomers,'' the number of older people with low vision will 
grow dramatically in the years ahead. Visual problems can have a 
devastating impact on quality of life. Low vision interferes with an 
individual's ability to perform daily routine activities, such as 
reading the newspaper, preparing meals, or recognizing faces of 
friends.
    To help address this concern, the NEI, through its National Eye 
Health Education Program, is developing a program to educate the public 
about low vision and the benefits of vision rehabilitation. This 
program also will provide information on services and devices available 
to help people cope with vision loss. The program will consist of a 
broad-based consumer media campaign; resources for health care 
professionals and social service organizations; and a community 
outreach program for both the general public and health care and social 
service professionals.
    The activities of the NEI are covered within the NIH-wide Annual 
Performance Plan required under the Government Performance and Results 
Act (GPRA). The fiscal year 2000 performance goals and measures for NIH 
are detailed in this performance plan and are linked to both the budget 
and the HHS GPRA Strategic Plan which was transmitted to Congress on 
September 30, 1997. NIH's performance targets in the Plan are partially 
a function of resource levels requested in the President's Budget and 
could change based upon final Congressional Appropriations action. NIH 
looks forward to Congress' feedback on the usefulness of its 
Performance Plan, as well as to working with Congress on achieving the 
NIH goals laid out in this Plan.
                                 ______
                                 
                Prepared Statement of Dr. Kenneth Olden
    Mr. Chairman and Members of the Committee: I am appearing before 
the Committee to present the President's budget request for the 
National Institute of Environmental Health Sciences (NIEHS) for fiscal 
year 2000, a sum of $390.7 million, an increase of $9.1 million (2.4 
percent) over the comparable fiscal year 1999 appropriation. Including 
the estimated allocation for AIDS, total support proposed for NIEHS is 
$397.9 million, an increase of $9.3 million over the fiscal year 1999 
appropriation. Funds for NIEHS efforts in AIDS research are included 
within the Office of AIDS Research budget request.
    Over the past 35-40 years, the United States has made remarkable 
progress in promoting economic growth while improving the environment 
and reducing adverse health threats to humans and the ecosystem. We can 
celebrate the fact that we have greatly enhanced the quality of our 
lives through the development and use of agricultural products and 
industrial technologies, the refinement and use of fossil fuels and 
other natural resources, the development of safer food and water 
processing and storage capabilities, and the development of efficient 
transportation systems.
    However, some of these technological innovations and processes have 
produced unintended by-products that pollute the environment and pose 
threats to human health and the ecosystem. Because of the introduction 
of new technologies and the expansion of the global economy, the 
opportunities and challenges in environmental health research have 
changed over the years. Managing today's risks requires consideration 
of susceptibility and low-dose exposures, use of high-throughput 
screening and environmental genomics, and establishment of interagency 
partnerships to ensure that all stakeholders are involved.
    We have not yet achieved this optimal state and the consequence is 
that, all too often, important public health decisions are made in the 
face of significant uncertainties. Current risk assessment approaches 
frequently use default assumptions which reflect an inadequate 
scientific foundation for assessing risk. The NIEHS is improving this 
situation through programs in mechanism-based toxicology that draw on 
the tools of molecular biology to provide approaches for the 
development of more accurate and inexpensive methods to perform not 
only identification of environmental hazards, the first step in risk 
assessment, but also contribute to determining quantitative dose-
response relationships and establishing biomarkers for estimating human 
exposure and toxicity.
                     eight critical research areas
    In previous appearances before this Committee, I have consistently 
emphasized the need to invest in eight critical areas of research. As 
shown in Exhibits #1A and #1B, these areas are: testing for 
carcinogenicity and toxicity, differences in susceptibility, children's 
health, health disparities, gender differences, exposure assessment, 
complexmixtures, and mechanisms of toxicity/carcinogenicity. I 
indicated that these models hold considerable promise for being less 
costly, less time consuming, and use fewer animals. Last year, I 
presented a progress report on our efforts to develop genetically-
engineered, or transgenic, mice to assess chemicals for their 
carcinogenic potential. For many years the major impediment in 
environmental health research has been the lack of appropriate animal 
models to investigate the molecular interactions between genes and 
environmental agents.
    Today, I want to discuss three of the areas of research shown in 
Exhibit #1. First, I want to bring to your attention the urgent need 
for the development and validation of methodologies for use in 
assessing the toxicity of novel protein/glycoprotein products generated 
by the burgeoning biotechnology industry. Then, I would like to 
describe some of our research in the area of children's environmental 
health and in understanding gender differences in response to 
environmental agents.
                   safety assessment of therapeutics
    In previous testimony, I emphasized the need for high-throughput 
assessment of toxicity as a priority for the Nation. The focus of my 
concern was on synthetic and natural chemicals used in various 
commercial products. I indicated that it was unrealistic to expect that 
we could ever evaluate the thousands of potentially useful chemicals 
synthesized each year using current methodology. To meet the new 
demands, we must develop new methodologies for toxicity testing that 
are less time consuming and less costly. In other words, the Nation's 
capacity to synthesize new chemical products far exceeds our ability to 
evaluate them for possible adverse health effects.
    However, the problem of having inadequate models for assessment of 
toxicity is not limited to the synthetic and natural chemicals 
typically evaluated in the National Toxicology Program (NTP). In recent 
years, fundamental advances in the therapeutic discovery process have 
opened the door to the development of a vast array of potential agents 
for the prevention and treatment of disease. New discovery techniques 
such as combinatorial chemistry, high-throughput screening, and mass 
spectrometry have provided drug discovery engineers with the ability to 
generate thousands of strategically-designed compounds. Coupled with 
the anticipated explosion of therapeutics targeted at the genetic 
mechanisms of disease, this has the potential to create a similar 
``bottleneck'' in the drug development processes. The use of 
conventional toxicity-assessment methods will not allow the testing of 
all the promising compounds that are being developed because of the 
time required and the amount of research resources required. Therefore, 
new approaches are needed for determining the safety of new therapeutic 
agents early in the drug discovery process.
    The current efforts of the NIEHS to develop surrogate and 
alternative methods of toxicological assessment of environmental agents 
will provide an opportunity to lead this research endeavor. We believe 
that many of the safety assessment methods that are currently being 
developed and evaluated will prove to be effective in determining the 
safety of new pharmaceutical compounds early in the discovery process. 
As a result of the efforts of the NIEHS to evaluate short-term 
alternatives to the conventional two-year rodent bioassay for 
carcinogenic potential, the Institute has become a partner in a world-
wide effort being conducted within the pharmaceutical industry under 
the aegis of the International Life Sciences Institute (ILSI) in 
Washington. The pharmaceutical industry, in partnership with the NIEHS, 
has developed a coordinated project in which promising new transgenic 
models are being evaluated for their utility in drug safety assessment.
    Early in 1997, international pharmaceutical and regulatory 
communities recognized the limited utility of conventional rodent 
toxicity and carcinogenicity studies and proposed a new scheme for 
carcinogenicity testing of pharmaceuticals. The Alternatives to 
Carcinogenicity Testing Committee was formed under the Health and 
Environmental Sciences Institute of ILSI. NIEHS scientists serve on the 
steering committee and as scientific advisors, and the NTP is a 
participant in the project. This government/industry partnership is a 
prototype effort which has laid the foundation for the rapid 
development and evaluation of surrogate methodologies. The project has 
provided NIEHS with the experience and leadership to promote the 
development of innovative and rapid new methodologies. Toward this end, 
we have begun the development of a ``tox chip'' that will utilize DNA 
microarray technology to search for surrogate biomarkers of organ-
specific toxicity and carcinogenic potential of chemicals. The NIEHS 
thus can serve as the focal point in what some believe to be the most 
exciting innovation in toxicologic assessment and toxicological 
research in the past decade.
                           children's health
    Last year I related to you our plans to improve children's 
environmental health through new research centers we were arranging to 
co-fund with the Environmental Protection Agency (EPA). I am pleased to 
report that eight centers have been established, focusing on the areas 
of environmental influences on asthma and development. The need for 
this research is revealed in Exhibit No. 2, which shows the rapid 
development of an organ system in a child. Here you see how the 
complexity of a child's brain increases during the first two years of 
life. The branching indicates the formation of nerve connections, a 
critical part of the brain's machinery. It is during this period of 
development when the elaborate network of the brain is being 
constructed that it is exquisitely susceptible to neurotoxic 
environmental agents such as lead, mercury, and polychlorinated 
biphenols. Just as the brain is rapidly developing at this stage of 
life, so too, are other organ systems.
    As you know, there is great concern that exposure standards that 
are set to protect adults do not adequately protect children. The 
various research activities that the NIEHS supports to address those 
concerns are shown in Exhibits No. 3A and No. 3B.
    The NIEHS is supporting research on many important aspects of 
children's health. We are examining the effects of early pesticide 
exposure on the brain, immune system, and reproductive system. We 
continue to sponsor an intervention trial on the ability of the 
chelating agent, Succimer, to reduce blood lead levels and to reverse 
neurological deficits associated with early, low-level lead exposures. 
We have initiated a study of Attention Deficit/Hyperactivity Disorder 
to identify environmental components of this disorder. We are 
interested in expanding the Agricultural Health Study, done in concert 
with the National Cancer Institute, to determine if nitrate exposures 
trigger juvenile diabetes. The Institute has a large, ongoing study of 
cleft palate birth defects to determine the environmental and genetic 
components of this all-too-common birth defect. The Institute is also 
continuing its asthma prevention and intervention studies, done in 
collaboration with the National Institute of Allergy and Infectious 
Diseases that examine the effect of reducing allergen exposure on 
incidence and risk of asthma.
                           gender differences
    Men and women can have very different disease risks, can react 
differently to the same medication, and can even have different 
outcomes from such surgical procedures as cardiac bypass surgery. In 
the context of environmental health, men and women can also have 
different responses to environmental agents. The NIEHS has a long 
history of exploring how gender affects susceptibility to environmental 
compounds. For example, research effort is being done to understand the 
consequence of exposure to endocrine disrupting compounds. These 
compounds have been suggested as causing a decrease in sperm count in 
men, an increase in breast cancer risk in women, and increased risks of 
testicular and prostate cancer in men.
    The NIEHS is also pursuing the development of environmental cohorts 
to help understand disease risks as a function of environmental 
exposures and gender. The first of these, the Sisterhood Study, would 
focus on breast cancer. Women who have a sister diagnosed with breast 
cancer would be recruited. Their environmental exposure history would 
be recorded, serum samples would be taken, and their health would be 
monitored for a long period of time. As these women developed breast 
cancer, their environmental exposures could be correlated with their 
disease risk. This type of prospective study has great potential for 
defining the environmental components of breast cancer and other 
diseases. For example, using a prospective study design, an NIEHS 
grantee showed that the pesticide dieldrin doubled the risk of a woman 
developing breast cancer.
    Another important area in which there are gender differences is 
that of autoimmune diseases such as multiple sclerosis, diabetes 
mellitus, and rheumatoid arthritis. Almost all autoimmune diseases 
occur more often in women than in men; in some of these diseases, more 
than 90 percent of patients are female. The NIEHS, in collaboration 
with other components of the NIH, as well as the EPA and private 
foundations, hosted a workshop on ``Linking Environmental Agents and 
Autoimmune Diseases.'' In order to stimulate research on the role of 
environmental agents in autoimmune diseases, recommendations from this 
workshop will be formulated into a Request for Applications (RFA) to be 
jointly sponsored by the NIEHS and other NIH components.
    The activities of the NIEHS are covered within the NIH-wide Annual 
Performance Plan required under the Government Performance and Results 
Act (GPRA). The fiscal year 2000 performance goals and measures for NIH 
are detailed in this performance plan and are linked to both the budget 
and the HHS GPRA Strategic Plan which was transmitted to Congress on 
September 30, 1997. NIH's performance targets in the Plan are partially 
a function of resource levels requested in the President's Budget and 
could change based upon final Congressional Appropriations action. NIH 
looks forward to Congress' feedback on the usefulness of its 
Performance Plan, as well as to working with Congress on achieving the 
NIH goals laid out in this Plan.
    These are only a few of the many exciting initiatives the NIEHS 
will be pursuing in the year to come. I believe that the ultimate 
outcome from these efforts will be a more informed public policy and 
better prevention strategies to protect public health.
                                 ______
                                 
               Prepared Statement of Dr. Richard J. Hodes
    Mr. Chairman and Members of the Committee: The President in his 
fiscal year 2000 budget has proposed that the National Institute on 
Aging (NIA) receive $612.6 million, an increase of $14.3 million (2.4 
percent) over the comparable fiscal year 1999 appropriation. Including 
the estimated allocation for AIDS, total support proposed for the NIA 
is $614.7 million, an increase of $14.4 million over the fiscal year 
1999 appropriation. Funds for NIA efforts in AIDS research are included 
within the Office of AIDS Research budget request.
    The activities of the NIA are covered within the NIH-wide Annual 
Performance Plan required under the Government Performance and Results 
Act (GPRA). The fiscal year 2000 performance goals and measures for the 
NIH are detailed in this performance plan and are linked to both the 
budget and the HHS GPRA Strategic Plan which was transmitted to 
Congress on September 30, 1997. The NIH's performance targets in the 
Plan are partially a function of resource levels requested in the 
President's Budget and could change based upon final Congressional 
Appropriations action. The NIH looks forward to Congress' feedback on 
the usefulness of its Performance Plan, as well as to working with 
Congress on achieving the NIH goals laid out in this Plan.
    I am pleased to report the NIA's recent progress, through research, 
toward extending the healthy, active years of life. Aging well is 
critical as the population of older Americans begins a rapid expansion. 
Fortunately, studies are showing that America's older population is 
becoming healthier and more fit. Previously reported findings of 
substantial declines in the rates of disability among older persons 
have recently been confirmed by an independent team of investigators 
using different sources of data. Notably, improvements in functioning 
were found to be greatest among those 80 and older, and the 
improvements in disability rates have accelerated from 1982 to the 
present. In further analyses, these decreases in disability have been 
documented in men and women, as well as among minorities. The NIA 
continues to promote research on the causes and economic consequences 
of the decline in disability rates with the goal of further 
accelerating these improvements.
             alzheimer's disease and brain biology research
    Alzheimer's disease (AD), the most common form of dementia, 
affecting as many as four million older persons, results from abnormal 
changes in the brain that begin long before memory loss and other 
clinical symptoms become apparent. AD eventually leaves patients 
oblivious to the outside world and unable to perform even the most 
basic tasks, with devastating consequences to individuals, families, 
and society. During the last 20 years, scientists have produced an 
extraordinary body of research findings relevant to AD. Based upon 
these advances, the NIH is launching an AD Prevention Initiative to 
expedite the search for underlying causes and to make a concerted 
assault on disease development and progression, in collaboration with 
other Federal agencies and the private sector. The Prevention 
Initiative will invigorate efforts to discover new treatments, risk 
factors, methods of early detection and diagnosis, and strategies for 
improving patient care and alleviating caregiver burdens. The 
initiative will also expedite movement of promising new treatments and 
prevention strategies into clinical trials. For the first time, drugs 
will be tested in clinical trials for their ability to delay or prevent 
the onset of AD. The success of this initiative would thwart the 
impossible demands that unchecked growth of the population afflicted 
with AD would place on individuals, families, and society.
    The AD Prevention Initiative will benefit from an explosion of 
findings on the underlying causes and pathology of AD. The two 
pathologic hallmarks that scar the brains of people with AD are senile 
plaques and neurofibrillary tangles. Tangles are the wreckage of 
microtubules that comprise the brain cells' internal transportation 
system. A protein known as tau normally acts to maintain the integrity 
of this system, and in the past year researchers provided evidence 
indicating that abnormalities in tau may be responsible for the 
formation of neurofibrillary tangles and death of brain cells. 
Scientists identified several mutations in the tau gene on chromosome 
17 that are associated with and appear to cause one form of familial 
dementia, providing the first direct evidence that mutations in tau can 
lead to disease. Further research will target tau's role in AD and 
related neurodegenerative diseases, including Parkinson's disease. The 
NIA is collaborating closely with the National Institute of 
Neurological Disorders and Stroke, National Institute of Mental Health, 
National Institute of Nursing Research, and other NIH institutes to 
stimulate rapid progress on AD, Parkinson's disease, and other 
neurodegenerative diseases.
    Another exciting advance with great promise has overturned long-
held beliefs that cells of the adult brain cannot reproduce. 
Investigators have shown that rodents, non-human primates, and humans 
make new, mature brain cells, even in older adults, in the part of the 
brain used in forming long-term memory. In one experiment, thousands of 
these cells were found to be produced each day. Intriguingly, the 
studies also showed that more new brain cells survived in mice exposed 
to stimulus-enriched environments, and that stress can substantially 
reduce the production of new brain cells. This finding is a major step 
forward, opening the way to enhancing nerve cell development and to the 
possibility of replacing nerve cells lost through age, trauma, or 
disease.
                            biology of aging
    Research on the biology of aging has led to a revolution in aging 
research. New findings about what causes cells to mature, to lose the 
capacity to reproduce, and eventually to die promise to provide 
valuable insights about the genesis of disease. In early 1998, major 
advances were made in understanding the role of telomeres, DNA segments 
on the ends of chromosomes that shorten with each cell division until, 
at a critical length, cell division ceases. Telomeres have been 
regarded as the cell's ``molecular clock.'' The enzyme telomerase adds 
DNA segments to the ends of chromosomes, compensating for telomere 
loss. Researchers demonstrated that, by inserting the gene for 
telomerase into normal, telomerase-negative cells, shortened telomeres 
grow longer, and the cells replicate far beyond the limits observed for 
normal cells while retaining the function of young, normal cells. This 
finding may provide a key to unlocking a part of the biology of aging 
and also has important implications for cancer research.
    An additional advance on aging mechanisms was recently reported for 
yeast. During the normal aging process, yeast cells begin to accumulate 
so-called DNA circles that are distinct from the DNA on chromosomes. 
Recently, researchers found that some yeast, with a specific gene 
alteration, have shorter life spans and show premature signs of aging. 
They discovered that this accelerated aging is associated with a more 
rapid accumulation of DNA circles. Scientists now think the buildup of 
DNA circles may be under genetic control and may function as an ``aging 
clock'' in yeast. Researchers have also discovered that the abnormal 
yeast gene associated with accelerated yeast aging and accumulation of 
DNA circles is similar to a human gene associated with Werner's 
syndrome, a deadly disease characterized by decreased life span and 
symptoms of premature aging. Lessons learned from aging yeast are thus 
guiding researchers' efforts to discover therapies for diseases 
associated with aging.
    Other experimental organisms, including the worm C. elegans and the 
fruit fly D. melanogaster, have helped in the search for gene mutations 
that affect an organism's life span. This year, researchers studying 
fruit flies showed that the mutant methuselah gene, named for the long-
lived Biblical patriarch, increases the flies' life span by an average 
of 35 percent over flies that lack this mutation. The mutant flies also 
were significantly more able to tolerate stress and heat and were more 
resistant to a herbicide that can damage cells. Ongoing research will 
attempt to identify how the methuselah gene mutation confers these 
characteristics more favorable for survival. This signal advance 
confirms the existence of genes that directly regulate aging and should 
lead to better understanding of mechanisms relevant to health in 
humans.
    The technology of molecular genetics can be valuable in other 
aspects of aging research. For example, humans lose up to a third of 
skeletal muscle mass and strength as they age. In 1998, investigators 
successfully used a gene therapy approach in mice to show that it may 
be possible to prevent age-related muscle atrophy and preserve muscle 
size and strength in old age. The new treatment increased muscle 
strength by 15 percent in young adult mice and, even more strikingly, 
by 27 percent in older mice. For older mice, muscle strength was 
restored to levels equivalent to those normally observed in young 
adulthood. To produce these results, the researchers engineered a virus 
to deliver into mouse muscle a normally-occurring gene called insulin-
like growth factor I (IGF-I), which plays a critical role in muscle 
repair and is believed to become less effective with age. While 
technical and ethical issues must be overcome if the procedure is to be 
tested in humans, this therapeutic approach has promise for reducing 
age-related muscle loss, for other applications involving muscle 
strengthening, and for treating diseases of muscle.
                    reducing disease and disability
    NIA research explores strategies that can significantly improve the 
quality of life of people of all ages. Exercise is a prime example of a 
behavior that has been proven to improve function and quality of life 
as we grow older. Even in the very old, simple exercises can maintain 
and even restore strength and stamina, flexibility, and balance. To 
encourage people to start an exercise habit and stick with it, the NIA, 
with Senator John Glenn, the National Aeronautics and Space 
Administration, and other Federal agency partners, launched a national 
education campaign on exercise for keeping fit after 50. The campaign 
is linked to an easy-to-follow, home-based guide to exercising that is 
available free of charge. The Internet version of the guide, which can 
be found at http://www.nih.gov/nia/health/general/general.htm, also 
provides animated versions of some of the exercises.
    Lifestyle changes can also be effective in reducing the risk of 
major disease. While blood pressure medications can substantially 
reduce the risk of cardiovascular disease, the leading cause of death 
and major cause of disability in the elderly, they can also cause 
adverse drug interactions and other side effects. Medications can also 
be very costly. The NIA and the National Heart, Lung, and Blood 
Institute co-funded the Trial of Nonpharmacologic Interventions in the 
Elderly (TONE) to test whether modest weight loss, reduction in sodium 
intake, or both can reduce or eliminate the need for medication in men 
and women ages 60 to 80 with mild high blood pressure. People who 
participated in the trial had previously been successful in controlling 
their blood pressure with a single antihypertensive medication. During 
the study, medication use was gradually withdrawn under medical 
supervision as the lifestyle changes were implemented. At the end of 
the trial, about one-third of the participants on either salt reduction 
or weight loss programs were able to maintain normal blood pressure 
without medication. Overweight participants who both lost weight and 
reduced sodium intake realized the greatest benefits; 44 percent of 
this group were able to control blood pressure without medication, 
compared with 16 percent of those receiving usual care. The TONE thus 
concluded that modest reduction in sodium intake and weight loss could 
provide a feasible, effective, and safe nonpharmacologic therapy for 
hypertension in a significant number of older persons who otherwise 
would be prescribed medications. TONE has important implications for 
physicians and public health professionals because it shows that older 
people with high blood pressure are able to make and sustain lifestyle 
changes. These changes are possible even after decades of relative 
physical inactivity and sub-optimal eating habits.
    Loss of bone mass due to osteoporosis results in millions of 
fractures each year in the U.S., causing substantial pain, dysfunction, 
and death in later life. The NIA and the National Institute of 
Arthritis and Musculoskeletal and Skin Diseases collaborate on research 
to prevent osteoporosis, including studies of hormone replacement 
toward this end. One of these studies measured the naturally occurring 
internal levels of estrogen in nearly 900 women over age 65 and found 
that women who had measurable blood levels of estrogen--much lower than 
the levels currently achieved by taking hormone supplements--had less 
than half the risk of experiencing a subsequent hip or vertebral 
fracture than women with undetectable levels of estrogen in the blood. 
These studies suggest that even very low-dose estrogen supplements may 
lower the risk of postmenopausal fractures in men and women without 
causing adverse effects sometimes associated with estrogen therapies. 
NIA investigators at a Claude D. Pepper Older Americans Independence 
Center are conducting preliminary clinical research to investigate the 
impact of low-dose estrogen supplementation on markers of bone strength 
and turnover.
    Researchers have been trying to identify factors that place certain 
drivers at increased risk for vehicular crashes as an alternative to 
imposing unfair, arbitrary age limits on driving. Recently, 
investigators reported on a study that tested 294 older drivers on a 
novel measurement of visual processing skills and then followed their 
driving experience for three years. The skills tested included visual 
processing speed and the ability to divide attention while driving. 
Drivers with a 40 percent or greater impairment in these skills at the 
beginning of the study were more than twice as likely to incur a crash 
during the followup period than those with lesser impairment. Valid 
tests to assess driving ability may enable people of all ages to drive 
as long as they can safely do so and can help drivers and their 
families to decide when the risks are too great to continue.
    Over the past year, aging research has maintained a rapid pace of 
discovery in basic science and has fueled the emergence of important 
opportunities for interventions to delay or to prevent diseases and 
disabling conditions that were once thought to be a normal part of 
aging. These advances hold the promise of adding life to years as our 
nation ages.
                                 ______
                                 
               Prepared Statement of Dr. Stephen I. Katz
    Mr. Chairman and Members of the Subcommittee: I am pleased to 
present the President's budget request for the National Institute of 
Arthritis and Musculoskeletal and Skin Diseases (NIAMS) for fiscal year 
2000, a sum of $310 million. Including the estimated allocation for 
AIDS research, total support proposed for the NIAMS is $314.75 million, 
an increase of $7.368 million or 2.4 percent over the comparable fiscal 
year 1999 appropriation. Funds for NIAMS efforts in AIDS research are 
included within the Office of AIDS Research budget request.
    I am honored to appear before this Subcommittee, to express my 
appreciation for the fiscal year 1999 appropriation, to share with you 
how we have invested these funds, and to talk about some of the 
scientific opportunities that we plan to pursue in fiscal year 2000. 
The fiscal year 1999 budget increase provided an opportunity for us to 
invest in key areas of public health needs, with a particular emphasis 
on clinical studies. Specifically we are launching a new clinical study 
of low back pain, expanding our clinical and basic studies of the many 
autoimmune diseases that we are concerned with, and investing in the 
next generation of clinical researchers. Let me tell you briefly about 
each of these.
    First, I want to expand on low back pain--a major problem for our 
society that affects people at home, at work, and in their recreational 
activities. We have initiated a multicenter clinical trial on low back 
pain that will assess the effectiveness of back surgery versus non- 
surgical treatment for the three most common diagnoses for which 
surgery is performed. The study has the potential to have a major 
impact on clinical practice and on costs of medical services. Second, 
with regard to autoimmune diseases, we are encouraging additional 
research on the molecular pathways and the genetic basis of the target 
organ that is involved in autoimmune diseases--what is it about the 
kidney, the brain, or the heart that makes them the target in lupus in 
some people and not in others, and what is it about the hair that makes 
it the target in alopecia areata, for example. Third, we are 
encouraging pilot clinical trials in rheumatic and skin diseases as 
well as clinical trials in osteoporosis. Fourth, we are responding to 
concern about building the pipeline of researchers who can conduct 
clinical studies by making a commitment to increase our support of 
training and sustaining clinical investigators who can work with basic 
scientists and use their knowledge to improve public health. These 
exciting new studies and support mechanisms are important additions to 
our research portfolio of fundamental and clinical studies of bone, 
muscles, skin, and joints. Now I want to share with you some highlights 
of progress and other opportunities in the NIAMS.
                              autoimmunity
    While our understanding of autoimmune diseases has improved 
significantly, researchers do not yet fully understand why some 
patients are affected with diseases in which their bodies' immune cells 
attack various vital organs. Diseases in this category include 
rheumatoid arthritis, systemic lupus erythematosus, Sjogren's syndrome, 
scleroderma, alopecia areata, and many blistering skin diseases--all 
potentially devastating chronic diseases which exact a huge toll in 
human suffering and economic costs. This year, we have witnessed 
significant, exciting research advances in several of these diseases.
    Rheumatoid arthritis is a chronic autoimmune disease that causes 
progressive destruction of the joints in affected people causing pain, 
suffering, and decreased mobility, and it has compromised quality of 
life and productivity for many Americans. There are now new medications 
that have been developed for patients with rheumatoid arthritis. This 
development is an excellent example of how fundamental knowledge can 
have an impact on health. Basic studies in recent years identified a 
particular molecule (called tumor necrosis factor alpha) that is 
important in causing the joints to become inflamed, and pharmaceutical 
companies were then able to target this molecule and try to eliminate 
it before it destroys the joint. The new treatments are either 
artificial decoys that bind the culprit molecule or are antibodies to 
the culprit molecule. Other new drugs for rheumatoid arthritis block 
enzymes that enhance joint inflammation. These drugs, known as COX-2 
inhibitors, are thought to target joint inflammation more specifically 
than do the currently available nonsteroidal anti-inflammatory drugs. 
There is also a newly available immunosuppressive drug that targets 
fast-growing blood cells that are involved in joint inflammation in 
patients with rheumatoid arthritis and other forms of inflammatory 
arthritis. As more disease-causing or amplifying molecules or cells are 
identified, they will be targeted for elimination in a similar manner.
    On a more fundamental level, NIAMS intramural scientists continue 
their forefront research on the genetics of rheumatoid arthritis and 
have provided critical information on the role of genes in influencing 
disease susceptibility in animal models of rheumatoid arthritis and 
other autoimmune disease. During the next few years, we are going to 
invest in developing these animal models further because of their 
relevance to our ongoing genetic studies of families affected with 
rheumatoid arthritis.
    Scleroderma is an autoimmune disease that occurs much more 
frequently in women than in men, and it is characterized by widespread 
hardening of the skin and other tissues. NIAMS- supported researchers 
have made progress in three areas of research related to scleroderma: 
(1) a new study in Oklahoma Choctaw Native Americans suggests that the 
gene for the protein fibrillin-1 is a possible susceptibility gene for 
scleroderma; this finding is particularly significant because we know 
that this gene plays an important role in an animal model of 
scleroderma; (2) an intriguing discovery that has identified the 
persistence of fetal cells in the skin and blood of women with 
scleroderma suggests that these persisting immune cells may start 
attacking the patients' own vital organs; and (3) a potentially very 
important study that has improved our understanding of the molecular 
pathways of fibrosis--the determination that cells from scleroderma 
patients have twice as many receptors for a particular molecule, 
transforming growth factor (TGF ), as cells from persons without 
scleroderma. We know that the binding of TGF to its receptors sends a 
signal to the cell to produce more collagen. This cycle then results in 
increased collagen formation and hardening of tissues. These three 
advances provide exciting research avenues to be pursued to improve our 
understanding of scleroderma.
    Alopecia areata is another example of an autoimmune disease and it 
is the most common form of acquired hair disease (excluding male 
pattern baldness). There has been a real expansion in our understanding 
of normal hair growth, and much of this enhanced knowledge comes from 
critical animal models that have been developed for studying this 
disease. In November 1998, the NIAMS joined the National Alopecia 
Areata Foundation in cosponsoring the Third International Research 
Workshop on Alopecia Areata at which research advances and many 
promising opportunities in understanding hair development, in 
developing better approaches to animal models, in searching for the 
antigenic targets in hair, and in attempting to define a better 
classification of disease were identified. We plan to develop a program 
announcement in this area in fiscal year 2000.
                              osteoporosis
    Studies of basic bone biology have given us important insights into 
how bone is built up and broken down normally in the body, and how this 
balanced process can go awry in conditions like osteoporosis, where the 
bone thins and fracture susceptibility increases. Research has 
increased our understanding of why estrogens are beneficial for people 
with osteoporosis, and why steroid drugs called glucocorticoids are 
deleterious and cause thinning of bones. Glucocorticoids are important 
in the prevention of rejection of transplanted organs and in the 
treatment of many common inflammatory diseases like rheumatoid 
arthritis and asthma, but their use can cause bone loss that leads to 
fractures and disability. New observations suggest that the bone loss 
may be explained in part by a reduction in the rate at which bone-
building cells form, along with higher rates of cell death in bone. 
Investigators are currently attempting to identify the pathways by 
which these changes occur.
    The NIAMS is also expanding its studies on osteoporosis from those 
primarily focused on women to those seeking to understand the causes 
and improve the treatments for men with osteoporosis. Osteoporosis is a 
significant public health issue that affects many Americans and 
threatens to affect many more as our population ages. The good news is 
that we have substantial research progress in this area. We have 
improved diagnostic approaches to osteoporosis, we have effective 
treatments available that were not on the market a decade ago, and we 
know much more about lifestyle practices that enhance bone health. 
Another initiative that the NIAMS is undertaking is the study of 
combinations of drugs for osteoporosis. This is an area in which the 
federal government can provide real leadership, because companies 
generally do not support studies that combine their drug with a drug 
from another company. The use of various drugs in combination has the 
potential to make an important contribution to the treatment of 
osteoporosis and thus to improve public health. Finally, information 
dissemination about osteoporosis, and indeed every other disease under 
the purview of the NIAMS, to all segments of the population remains a 
key priority of the Institute. The NIAMS joined with six other 
components of the Department of Health and Human Services in awarding a 
cooperative agreement for the NIH Osteoporosis and Related Bone 
Diseases--National Resource Center. Also, in fiscal year 2000 the NIAMS 
and other NIH institutes and other federal agencies will sponsor a 
Consensus Development Conference on Osteoporosis that will serve to 
educate physicians as well as other health care providers and the 
public with vital substantiated information about the diagnosis, 
treatment, and prevention of osteoporosis.
                           health disparities
    The NIAMS is concerned that there are disparities in the health 
status of Americans. One example is the finding from studies in 
osteoarthritis that African American people have much lower rates of 
total knee replacements than whites, even when adjusted for age, sex, 
and insurance coverage. Understanding the reasons for this disparity 
will help us to target particular populations to develop prevention 
strategies. In addition, studies in behavioral research have 
demonstrated that Hispanic and African-American lupus patients have 
more severe disease at the time of presentation than Caucasian 
patients. Genetic and ethnic factors appear to be more important than 
socioeconomic factors in influencing disease activity at the time of 
disease onset. Furthermore, differences in the disease course and 
outcome in lupus patients also appear to be caused by many factors--
including the ways in which patients themselves respond to their 
illness. We already know a lot about the importance of ``self-
efficacy'' and how patients manage their disease. Many chronic diseases 
like osteoarthritis and lupus affect women and minorities 
disproportionately, and we are actively seeking to understand the 
causes of these gender and ethnic differences.
                exercise physiology and sports injuries
    Every day more and more Americans are undertaking some sort of 
fitness program or exercise activity. While this is good news--as we 
are all encouraged to be more active--it is also accompanied by a 
significant increase in sports injuries, particularly in women. We are 
not yet sure why, but women are particularly vulnerable to some types 
of injuries when they participate in sports, especially injuries of 
their knee joints. We are joining with the American Academy of 
Orthopaedic Surgeons to sponsor a meeting on women and sports injuries 
this June, just prior to the 1999 Women's World Cup Soccer Tournament 
in Washington, DC. We intend to use this opportunity to put a spotlight 
on women in sports, and to try to understand the particular injuries 
that women suffer. We are working to identify the causes of sports and 
exercise injuries, and to develop effective strategies to avoid and 
treat them.
         medical research makes a difference in people's lives
    As the illustrations just cited reveal, considerable progress has 
been made in identifying and alleviating many of the physical and 
social consequences of chronic diseases, and the investigations 
underway and planned promise to continue to improve life. We are proud 
of the achievements of the scientific programs we have supported, of 
the individual scientists who devote their lives to research, and of 
the value of research to every day life. We remain very clear in our 
goal: to support high quality science that will continue to improve the 
health of the American people.
    The activities of the National Institute of Arthritis and 
Musculoskeletal and Skin Diseases are covered within the NIH-wide 
Annual Performance Plan required under the Government Performance and 
Results Act (GPRA). The fiscal year 2000 performance goals and measures 
for NIH are detailed in this performance plan and are linked to both 
the budget and the HHS GPRA Strategic Plan which was transmitted to 
Congress on September 30, 1997. NIH's performance targets in the Plan 
are partially a function of resource levels requested in the 
President's Budget and could change based upon final Congressional 
Appropriations action. NIH looks forward to Congress' feedback on the 
usefulness of its Performance Plan, as well as to working with Congress 
on achieving the NIH goals laid out in this Plan.
                                 ______
                                 
             Prepared Statement of Dr. James F. Battey, Jr.
    Mr. Chairman and Members of the Committee, the President in his 
2000 budget has proposed that the National Institute on Deafness and 
Other Communication Disorders receive $235.3 million, an increase of 
$5.6 million over the non-AIDS portion of the comparable fiscal year 
1999 appropriation. Including the estimated allocation for AIDS in both 
years, total support proposed for NIDCD is $237.2 million, an increase 
of $5.6 million over the fiscal year 1999 appropriation. Funds for 
NIDCD efforts in AIDS research are included within the Office of AIDS 
Research budget request. I am honored to appear before you as the 
Director of the National Institute on Deafness and Other Communication 
Disorders (NIDCD).
    NIDCD conducts and supports research and research training on 
normal processes and disorders of hearing, balance, smell, taste, 
voice, speech, and language. These processes are fundamental both to 
the way people perceive the surrounding world and to their ability to 
communicate effectively with other individuals. As we approach the end 
of the century, effective human communication is an increasingly 
important requirement for a wide range of employment opportunities. 
Within the last year, we have witnessed outstanding research progress 
by NIDCD-supported scientists and clinicians, progress further 
accelerated by the efforts of other institutes at the NIH. This 
progress is lighting the path for ongoing and future research studies 
to achieve a pressing goal: to help individuals with communication and 
sensory systems disorders.
early identification of hearing impairment: early intervention results 
                       in better language skills
    Since about 33 children are born each day in the United States with 
a significant hearing impairment, early identification of these 
affected children has become an important public health objective. 
Recent results from NIDCD-supported research show that children whose 
hearing impairments are identified by six months of age, and who 
consequently receive appropriate intervention, demonstrate 
significantly better language scores than children whose impairment was 
initially identified after six months of age. For children with normal 
cognitive abilities, this language advantage was found across all 
tested ages, communication modes, degrees of hearing loss, and 
socioeconomic strata.
    In 1993, an NIH Consensus Development Conference on the Early 
Identification of Hearing Impairment in Infants and Young Children 
recommended universal screening of all infants for hearing impairment. 
In the near future approximately 19 states will implement programs to 
screen all neonates for hearing impairment before discharge from the 
hospital. [Exhibit 1] This number is expected to increase rapidly in 
the next decade. Implementation of intervention strategies that 
optimize language skills is a necessary sequel to early identification.
    The need to define and validate optimal intervention strategies for 
infants with all degrees of hearing impairment is clear. In March 1998, 
the NIDCD convened a Working Group on the Early Identification of 
Hearing Impairment to provide advice on the most pressing research 
questions regarding diagnostic and intervention strategies that follow 
neonatal hearing screening. The workshop focused on strategies that are 
appropriate immediately after an infant is referred from the screening 
program, depending on the degree of hearing impairment identified. 
Current studies indicate that approximately 10 to 20 percent of the 
infants identified through neonatal hearing screening have profound 
hearing impairment. The other eighty to ninety percent have lesser, but 
varied, degrees of hearing impairment, defining additional populations 
of infants for whom optimal intervention strategies remain to be 
developed and validated through research. In October 1998, NIDCD 
solicited grant applications to develop and validate these needed 
intervention strategies. We anticipate the results of a recently 
concluded, multi-center collaborative project which will provide 
critical information regarding efficacy and cost of different screening 
protocols.
     discovering the genes underlying hereditary hearing impairment
    Roughly one child in two thousand born in the United States has 
hereditary hearing impairment of sufficient severity to compromise the 
development of normal language skills. Some of these children have 
hearing impairment together with other problems, a condition known as 
syndromic hearing impairment. Many of the genes where mutations cause 
syndromic hearing impairment have been identified. [Exhibit 2] However, 
about seventy percent of children with hereditary hearing impairment 
have no obvious associated clinical abnormality, and their hearing 
impairment is referred to as nonsyndromic hereditary hearing 
impairment. Beginning in 1992, the location in the human genome of over 
forty different genes related to nonsyndromic hearing impairment has 
been reported. Many of these advances resulted from extramural NIDCD 
support coupled with research efforts in NIDCD Intramural laboratories.
    Within the last two years, great progress has been made in bridging 
the gap between determining the location of a gene involved in 
nonsyndromic hereditary hearing impairment and using this knowledge to 
clone the gene. As of January 1999, eight genes have been cloned, six 
within the last year. The identity of genes where mutations cause 
hearing impairment has taught us much about the molecular processes 
that are essential for normal hearing. These genes encode proteins that 
serve many different functions, including the transport of molecules 
between cells, forming channels that transport molecules into and out 
of cells, gene regulation, and moving molecular ``cargo'' within cells. 
Mutations in one of these genes, connexin 26, appears to be responsible 
for as much as forty percent of hereditary hearing impairment in the 
United States, and an even greater percentage in certain population 
subgroups.
    With some of the genes in hand and more on the way, scientists and 
clinicians are turning their attention to unraveling the genetic 
epidemiology of hereditary hearing impairment. A number of important 
questions are being addressed using these new research tools, 
including: what fraction of the cases of hereditary hearing impairment 
result from mutations in each of the eight genes? In different families 
transmitting the same hereditary hearing impairment gene, is the same 
mutation in the gene found, or are there different mutations in 
different families? Does the type of mutation inform us about the onset 
or severity of hearing impairment? What are the differences in the 
genetic epidemiology of hereditary hearing impairment in different 
population groups, or in different parts of the world? Answers to these 
questions will play an important role in guiding clinicians and 
scientists in their efforts to translate these scientific advances into 
genetic diagnostic tests to provide a precise genetic diagnosis soon 
after birth, leading to early and appropriate intervention strategies 
to optimize language skills.
      neuroimaging reveals brain activity associated with language
    The development of sophisticated neuroimaging techniques has 
allowed researchers to monitor brain activity patterns associated with 
perception and production of language, both spoken and signed. For 
example, functional magnetic resonance imaging (fMRI) findings suggest 
that delayed acquisition of language leads to anomalous patterns of 
brain activity when language is ultimately acquired. Using fMRI, NIDCD-
supported investigators have documented reorganization of brain 
activity following treatment for acquired reading disorders following 
stroke. fMRI performed during a reading task before and after treatment 
indicated a shift in brain activation from the left angular gyrus to 
the left lingual gyrus, showing that it is possible to alter brain 
activity patterns with therapy for acquired language disorders. 
Continued investigations of normal and disordered language processes 
using neuroimaging tools will refine our understanding of brain 
function, improve our ability to identify the underlying causes of 
language impairment, and to document and refine the efficacy of 
interventions. Neuroimaging studies have had, and most certainly will 
continue to have, a profound impact on the study of language and 
language impairments.
              persistent stuttering has a genetic etiology
    Stuttering is a speech disorder that typically begins in early 
childhood. Although it is estimated that more than two million 
Americans stutter, little is known about the cause of stuttering. At 
least five percent of children ages two to five are affected by 
stuttering. About twenty percent of these children develop chronic 
stuttering persisting into adult life, while the remaining eighty 
percent recover spontaneously. When stuttering persists, the disorder 
impairs verbal communication often resulting in difficulties with 
emotional and social adjustment. NIDCD supports research to develop 
methods to identify which young children are at high risk for 
persistent stuttering. This research has confirmed earlier research 
indicating that the tendency to stutter runs in families. Moreover, if 
persistent stuttering is observed in a child's family, the child is at 
increased risk for developing persistent stuttering. These findings 
help to inform clinicians about which children are more likely to have 
stuttering that persists into adult life, the group in greatest need of 
intense intervention.
                       sensorineural regeneration
    Our sensory systems possess exquisite sensitivity, connecting us to 
our physical world and providing indispensable aids for daily life. 
Some of our sensory systems, such as the senses of smell and taste, 
have the capacity to continuously replace sensory cells throughout 
adult life. The regenerative abilities of these sensory systems stand 
in sharp contrast to the limited potential for regeneration seen 
elsewhere in the adult nervous system. Studying the mechanisms that 
underlie sensory cell regeneration affords a unique opportunity to 
learn how to control and enhance neuronal regeneration at the cellular 
and molecular levels. Moreover, the information gained may translate 
into clinically useful information for regenerating neurons lost in the 
central nervous system following stroke, trauma, and neurodegenerative 
diseases.
    Sensory systems show remarkable differences in the degree to which 
they are able to generate new sensory cells. In the mammalian hearing 
organ, the number of sensory hair cells is established early in 
development, and, following injury, are not replaced. In birds, by 
contrast, hair cell regeneration and restored auditory function is 
observed following injury. Scientists are examining the interaction 
between extracellular factors and molecules within the cell which 
determine whether or not a supporting cell in the inner ear can divide 
and generate a new hair cell. This regulatory process is fundamental to 
growth regulation in all organ systems, and is called cell cycle 
regulation.
    NIDCD-supported scientists have examined the importance of one cell 
cycle regulatory protein, cyclin-dependent kinase inhibitor 27 
(p27Kip1), an enzyme shown to regulate cellular proliferation by 
interrupting the cell cycle in other model systems. During development 
of the organ of Corti, as cells undergo terminal differentiation to 
become hair cells, they no longer express p27Kip1. By contrast, 
supporting cells, which are potential hair cell precursors, continue to 
express this enzyme. In mice where scientists have inactivated the 
p27Kip1 gene, there is an increased number of hair cells and supporting 
cells in the developing cochlea, and hair cells continue to 
differentiate from proliferating supporting cells in postnatal animals 
and adults. In contrast, normal mice with a functional p27Kip1 gene 
show no increases in hair cell number and no new hair cells are 
produced after birth. These exciting results demonstrate for the first 
time that hair cell regeneration is possible in mammals, and that cell 
cycle regulation is important in controlling hair cell regeneration.
    In contrast to hair cells in the mammalian inner ear, olfactory 
sensory neurons are continuously replaced from a stem cell population 
in the nasal epithelium and the new neurons regrow axons that connect 
only to appropriate targets in the brain. NIDCD supported scientists 
have shown that olfactory neuronal regeneration is regulated by the 
production of a secreted growth regulatory molecule called bone 
morphogenetic protein 4. Knowledge gained from studying regulation of 
regeneration of olfactory neurons may provide insight into the more 
general issue of neuronal regeneration in the brain.
           olfactory receptors proteins have a dual function
    Researchers estimate that about 1,000 genes, or approximately 1 
percent of our genetic information, is devoted to olfactory receptor 
genes, making this among the largest gene families thus far identified 
in mammals. These genes encode the proteins that bind odorants, which 
trigger a cascade of events within the olfactory neuron resulting in a 
signal being sent to the brain. Scientists are beginning to understand 
how olfactory signals are processed in the central nervous system. Each 
of the millions of olfactory neurons selects only one of this large 
receptor gene family for expression. All olfactory neurons expressing 
the same receptor send these axons to the same targets in the brain. An 
NIDCD-supported scientist has determined molecular mechanisms that 
regulate this remarkable targeting specificity by showing that the 
olfactory receptor protein itself appears to play a role in guiding 
axons to precise targets within the brain. The olfactory receptor 
expressed by a sensory neuron would appear to provide an address that 
guides the growing axon to a defined target. Genetic manipulation of 
the receptor that is expressed results in a new address and a different 
pattern of connections. These studies reveal a new molecular mechanism 
for determining connections between neurons in the nervous system, 
which may play an important role in the development of the central 
nervous system.
    The activities of the National Institute on Deafness and Other 
Communication Disorders are covered within the NIH-wide Annual 
Performance Plan required under the Government Performance and Results 
Act (GPRA). The fiscal year 2000 performance goals and measures for NIH 
are detailed in this performance plan and are linked to both the budget 
and the HHS GPRA Strategic Plan which was transmitted to Congress on 
September 30, 1997. NIH's performance targets in the Plan are partially 
a function of resource levels requested in the President's Budget and 
could change based upon final Congressional Appropriations action. NIH 
looks forward to Congress' feedback on the usefulness of its 
Performance Plan, as well as to working with Congress on achieving the 
NIH goals laid out in this Plan.
                                 ______
                                 
               Prepared Statement of Dr. Steven E. Hyman
    Mr. Chairman and members of the Committee: I am pleased to present 
the President's budget request for the National Institute of Mental 
Health (NIMH) for fiscal year 2000, a sum of $758.9 million, an 
increase of $17.8 million (or 2.4 percent) above the comparable fiscal 
year 1999 appropriation. Including the estimated allocation for AIDS, 
total support proposed for NIMH is $876 million, an increase of $20.5 
million over the fiscal year 1999 appropriation. Funds for NIMH efforts 
in AIDS research are included with the Office of AIDS Research budget 
request.
                      objectives of nimh research
    The central goals of the NIMH are to better understand, treat, and, 
ultimately, to prevent mental illness. To succeed in this task, we must 
understand how the healthy brain works and how it goes awry to produce 
mental disorders. Achieving an understanding of the brain, the most 
complex object of all human inquiry, requires a substantial investment 
in fundamental science--specifically neuroscience, behavioral science, 
and genetics. Our mission also requires that we translate the fruits of 
basic science into the focus of clinical studies and into trials of 
both treatment and preventive interventions. Finally, we must 
investigate how these might best be implemented in the real world. 
Understanding disorders of the most complex, integrative functions of 
our brain is a difficult task that requires our Nation's very best 
scientific minds and a solid platform for our endeavors. I am pleased 
to report our progress in these areas.
           review and reorganization of initial review groups
    Over the past two years, NIH has been working to integrate the peer 
review groups, or study sections, that review grant applications. This 
effort was prompted by the merger into NIH of the institutes that 
formerly were components of the Alcohol, Drug, and Mental Health 
Administration. We and several other institutes proposed that all of 
NIH science would benefit if we began to review neuroscience, 
behavioral science, and AIDS-related applications in a wholly new set 
of study sections designed to reflect the science of the present and 
the future rather than the science of the past. With many extramural 
investigators assisting, NIH last year completed reorganizing 
neuroscience and AIDS-related study sections and, more recently, 
behavioral science study sections. The first round of review in our new 
neuroscience study sections went more smoothly than one might have 
predicted. Applications that were referred to the NIMH for potential 
funding received superb scores, and NIMH staff confirm that we are 
seeing appropriate and outstanding applications in neuroscience. We 
look forward to seeing the results of the other integrations over the 
next year.
                  revitalization of research structure
    We are rejuvenating our Intramural Research Program, raising 
standards and tightening procedures; given these tasks, I am fortunate 
to have had the opportunity to appoint a renowned scientist and natural 
leader, Dr. Robert Desimone, to direct our Intramural Research Program. 
In a development that bodes extremely well for the future of intramural 
neuroscience research and clinical neuroscience at the NIH, we have 
embarked on a period of remarkable cooperation with the National 
Institute of Neurological and Disorders and Stroke (NINDS). Our joint 
efforts are aimed at complementary and synergistic recruitments and 
renewal of facilities to recruit the most outstanding young scientists 
to the intramural program.
    Finally, we have reorganized the NIMH funding divisions that 
provide grant funds to extramural scientists. I am confident that the 
reinvigorated intellectual excitement of our staff will translate into 
more and better applications to NIMH.
         global burden of illness spurs collaborations with who
    My interest in recruiting the best scientists to a vigorous 
Institute is driven by the enormous, burden of mental disorders. I have 
spoken to you in the past about the Global Burden of Disease study, 
sponsored by the World Health Organization and World Bank. It is 
chastening to recall that in the United States, four of the ten leading 
causes of disability are mental disorders, including the number one 
cause, major depression. Depression now is the leading cause of 
disability throughout the world; even when listed among traditional 
``killer'' diseases, it ranks fourth and is projected soon to become 
the world's second leading cause of disability-adjusted life years, or 
DALYs. You may have seen the recent New York Times account of a 
``plague'' of suicides among women in rural China, where the rate is 
fivefold that found in other nations. The fact that some officials 
dispute the contribution of mental disorders to this public health 
emergency adds urgency to our various international research 
initiatives. We are working, for example, with other countries to 
evaluate the usefulness of screening for and treating depression in 
primary care settings. Also, in collaboration with WHO, NIMH assumed a 
lead role at NIH in developing a new ``disablement'' instrument. This 
new tool will permit WHO to measure more accurately the functional 
status of people with mental and substance abuse disorders and, thus, 
sharpen its disability calculations--a critical ability, in light of 
the obvious limitations of judging a population's health on the basis 
of mortality statistics alone. Now, let me describe specific NIMH 
scientific plans and accomplishments, beginning with short-term and 
progressing to long-term goals.
                       combating school violence
    An immediate goal is to see the yield of research sponsored by NIMH 
and other agencies translated into useful interventions. Over the past 
year, our Nation's attention was caught by unprecedented incidents of 
violence in schools--the tragedies in Jonesboro (AR), Paducah (KY), 
Edinboro (PA), Springfield (OR), Pearl (MS), and Burlington (WI). NIMH 
is collaborating with the Department of Education's Safe and Drug Free 
Schools program; with the Department of Justice, Office of Juvenile 
Justice and Delinquency Prevention; and with the Center for Mental 
Health Services, to transfer knowledge about appropriate interventions 
for troubled youth.
    Our research shows that symptoms of mood and anxiety disorders, 
attention-deficit/hyperactivity disorder, and conduct disorders derail 
children from their normal developmental trajectory, impair learning, 
are risk factors for adult psychopathology, and contribute to the high 
rate of suicide among our youth and to violence. By working with other 
agencies--for example, by building on our history of collaborations 
with Head Start and other components of the Administration for Children 
and Families--we want to ensure that potentially useful research 
results get tested in real world settings and, if proven effective and 
cost-effective, are used where they can do some good.
              expanded clinical trials for mental illness
    In the intermediate term, we must apply information gained from 
basic research into rigorous, prospective trials of the efficacy and 
general effectiveness of treatments. NIMH has not, in its recent 
history, supported a substantial clinical trials program. I am pleased 
to report that we now have initiated clinical trial contracts to study 
the treatment of manic depressive illness, pediatric depression, and 
treatment-resistant depression, and are considering how best to go 
about preventive and early intervention trials for depression and for 
psychotic disorders. The first trial initiated in this program--our 
collaboration with the NIH National Center for Complementary and 
Alternative Medicine to evaluate the herbal, St. John's Wort, in 
treating depression--is underway.
                       genetics research at nimh
    With regard to longer term scientific directions, we now have a 
comprehensive strategy for discovering the genes that confer 
vulnerability to schizophrenia, manic-depressive illness, depression, 
autism, and other mental disorders. These disorders reflect the 
workings not of single, powerful, readily detectable genes, but rather 
the small contributions of many genes and non-genetic factors. Finding 
these ``needles in a haystack'' is critical because they will be 
central tools as we interrogate the brain as to what goes on in mental 
disorders and work to develop novel therapies. Key to our success will 
be an effort to collect DNA and phenotype information from affected 
families and assist NIH to develop technologies to solve genetically 
complex disorders.
    Like others at NIH, we are relying on the Human Genome Project to 
produce a reference human sequence. At the same time, we and other 
neuroscience institutes are contributing to other aspects of the 
technological platform for genetics studies. Initially with NINDS--and 
now with other neuroscience institutes as well--we have launched the 
Brain Molecular Anatomy Project, or BMAP. This is an attempt, initially 
in the mouse but ultimately in the human, to discover all of the genes 
involved in building and maintaining the brain. Information from the 
BMAP project will be fed into studies trying to find human genetic 
variation. These will be our best candidates for genes that contribute 
to vulnerability of mental illness.
    The analysis of genetic variations and their relationships to 
disease will require additional technologies. One important 
technology--the ability to score many genetic variants on what have 
been called ``DNA chips''--is being supported both extramurally and by 
a shared NIH intramural effort. In addition, NIMH has the lead in a 
successful NIH-wide Request for Applications to develop novel 
statistical and mathematical methods to analyze the extraordinary 
complexity of the results.
    Finally, we are closely involved with six other neuroscience-
funding institutes to develop programs using model organisms, most 
notably the laboratory mouse, to understand how the brain is built and 
maintained, how it changes over the life span, and what might 
contribute to behavioral disorders. This effort will require 
collaborations among behavioral scientists, neuroscientists, and 
geneticists, and will provide rich possibilities for the future. During 
the past year, for example, NIMH funded research on mouse models has 
provided insight into fundamental processes of learning and memory. 
Understanding how the brain stores information and converts it to 
behavior is key to understanding complex mental disorders. NIMH-
sponsored scientists recently reported using gene knock out techniques 
to examine the link between a behavior and the responsible molecular 
reactions in specific brain cells by demonstrating the role of an 
enzyme--protein kinase C, or PKC--in motor memory and coordination. 
Their success will lead to further studies examining the function of 
genes thought to be functionally important in normal brains, 
psychiatric illness, and neuronal disease.
                      children's mental disorders
    One other set of important, long-term plans is our effort to build 
the field of children's mental health research. As I have testified 
previously, I am concerned over the dearth of qualified investigators 
in this arena. NIMH now has issued a special Request for Applications 
to create incentives for experienced investigators to move into studies 
of mental illness in children. We have created two funding branches 
devoted to children: Developmental Psychopathology and Children's 
Treatment and Preventive Interventions. In basic science, we are 
collaborating with NINDS as we focus in focus on developmental 
neurobiology. We also are emphasizing efforts to develop better 
screening tools and epidemiologic methods that will help us to 
understand exactly what is the burden of mental illness and, more 
generally, of emotional symptomatology for our Nation's youth, its 
impact, and its relationship to service availability.
    NIMH was the lead organizer of a recent NIH Consensus Development 
Conference on Attention-Deficit/Hyperactivity Disorder, or ADHD. The 
meeting highlighted useful information for parents and treatment 
professionals, but for me, it more importantly produced a mandate for 
better diagnostic approaches to ADHD, better documentation of the long-
term impact of stimulant drugs on children with ADHD, and development 
of alternative behavioral and pharmacologic treatments. Similar needs 
characterize other childhood disorders--for example, disorders of mood 
and anxiety and autism, for which four NIH institutes share scientific 
responsibility.
    This drive toward the future is paved by current successes, such as 
that seen in the recently reported Multimodal Trial of Treatment for 
Attention Deficit Hyperactivity Disorder. The MTA evaluated four 
treatment conditions--medication with supportive care, behavioral 
treatment, combined, or ``usual'' community treatment. Findings from 
nearly 600 kids, followed over 14 months, pointed to the superiority of 
appropriately managed medication strategies in treating core ADHD 
symptoms or medication plus behavioral treatments for also addressing 
non-ADHD-symptom areas such as social skills or academic achievement. 
It will be important to examine long-term outcomes. NIMH has funded to 
date 7 Research Units in Pediatric Psychopharmacology, 1 new Child and 
Adolescent Development and Psychopathology Treatment Center, and 
launched several new multisite clinical trials, including, last year 
studies of treatments for children with schizophrenia, manic-depressive 
illness, depression, and OCD.
    The activities of the NIMH are covered within the NIH-wide Annual 
Performance Plan required under the Government Performance and Results 
Act (GPRA). The fiscal year 2000 performance goals and measures for NIH 
are detailed in this performance plan and are linked to both the budget 
and the HHS GPRA Strategic Plan which was transmitted to Congress on 
September 30, 1997. NIH's performance targets in the Plan are partially 
a function of resource levels requested in the President's Budget and 
could change based upon final Congressional Appropriations action. NIH 
looks forward to Congress' feedback on the usefulness of its 
Performance Plan, as well as to working with Congress on achieving the 
NIH goals laid out in this Plan.
                                 ______
                                 
               Prepared Statement of Dr. Alan I. Leshner
    I am pleased to present the President's budget request for the 
National Institute on Drug Abuse for fiscal year 2000, a sum of $429.2 
million, an increase of $10.3 million (2.4 percent) above the fiscal 
year 1999 appropriation. Including the estimated allocation for AIDS, 
total support provided for NIDA is $622.8 million an increase of $14.6 
million over the fiscal year 1999 appropriation. Funds for NIDA efforts 
in AIDS research are included within the Office of AIDS Research budget 
request.
    NIDA has had another very successful year filled with major 
scientific advances that are directly benefitting the citizens of this 
Nation. Among other benefits these advances have given us an 
opportunity to embark on a course that is certain to enhance drug 
addiction treatment throughout this country. Recent advances in 
treatment research, coupled with the generous appropriations that NIDA 
received last fiscal year, are enabling the Institute to accelerate the 
launch of its much-anticipated and needed National Drug Abuse Treatment 
Clinical Trials Network. This Network will serve as both the 
infrastructure for testing science-based treatments in diverse patient 
and treatment settings and the mechanism for promoting the rapid 
translation of new science-based treatment components into practice. I 
will return to this issue shortly, but first would like to mention some 
other significant discoveries and advances that are affecting our 
approach to addiction research.
    The use of the most modern technologies, developed through the 
combined efforts of many NIH Institutes, is revolutionizing our 
approaches and understanding of the processes of drug abuse and 
addiction. Two technologies in particular--molecular genetics and brain 
imaging--are quickening the pace of science and allowing us to pose a 
whole new series of sophisticated questions that were unimaginable just 
a few years ago.
                      molecular genetic techniques
    When I became the NIDA Director five years ago, I reported what 
then was a milestone in drug abuse research that our researchers had 
identified and cloned the major receptors for virtually every drug of 
abuse. Today, I am equally pleased to report that the application of 
molecular genetic technologies has taken our understanding to the next 
level by giving us a greater understanding of how drugs work at these 
receptors and how these mechanisms impact behavior and other brain 
functions. In the past few years this technology has resulted in the 
development of new strains of genetically altered, ``knockout'' mice, 
which lack one or more of these receptors. Studies of the drug-
responsiveness and behavioral characteristics of these mice are 
illuminating both the complexity and the inter-connectedness of the 
brain mechanisms that underlie individual drugs of abuse. Earlier this 
year NIDA-supported researchers used these knockouts to discover that 
some of the properties of opiate drugs such as heroin or morphine that 
lead people to abuse them are actually dependent upon the presence of 
the brain's natural receptors for cannabinoids, or marijuana-like 
drugs. Moreover, we are seeing increasing evidence that there are 
common brain mechanisms subsuming the phenomenon of addiction, 
regardless of the type of drug being used.
    Information from these types of studies are also charting us in new 
directions. For example, they are pointing us to new targets in our 
medications development program. They are also proving to be invaluable 
to NIDA as it continues its ``Vulnerability to Addiction'' Initiative. 
This multi-faceted initiative to identify the genetic and environmental 
factors that contribute to individual differences among people in their 
addiction vulnerability will improve diagnosis, prevention, and 
treatment of drug addiction.
    A prime example of the applicability of basic genetics research to 
the real life problem of addiction was reported at our ``Addicted to 
Nicotine'' Conference. Researchers identified a gene variant for a 
liver enzyme that seems to predict, at least in part, individuals who 
are more or less likely to become dependent upon nicotine. This finding 
gives us a new target for developing more effective medications to help 
people stop smoking. Another major output from that conference was the 
announcement of co-support by the National Cancer Institute and NIDA to 
establish collaborative Transdisciplinary Tobacco Research Centers. The 
Centers will bring together researchers from different scientific 
disciplines to answer pressing questions, such as: Why do children 
start smoking? How can people be helped to quit smoking? And, what are 
the genes that predispose people to tobacco addiction?
           drugs and their long lasting effects on the brain
    Genetic techniques are one of many tools being used by scientists 
to expand our understanding of addiction. Neuroimaging is another. Use 
of the most advanced neuroimaging technologies is providing tremendous 
insights into what happens to brain structure and function in awake, 
behaving human beings both during drug experiences and over the course 
of their addictions.
    We are now clearly seeing the long lasting effects that drugs can 
have on the brain and how these may have lasting effects on an 
individual's emotional responses and on his or her learning and memory 
capacity. For example, MDMA or ``Ecstasy'' and methamphetamine are both 
becoming increasingly popular with young adults who attend organized 
all night social gatherings or ``raves.'' Based on animal studies both 
drugs have long been thought to be neurotoxic at doses similar to what 
is being used by these young adults, but direct evidence in humans was 
lacking. Now let me show you some alarming recent data.
    Figure 1 shows images of two human brains. The one on top belongs 
to an individual who has never used Ecstasy. The bottom images show the 
brain of an individual who had used Ecstasy heavily for an extended 
period, but was abstinent from drugs for at least three weeks prior to 
the study. Clearly the brain of the ``Ecstasy'' user on the bottom has 
been significantly altered. The specific parameter being measured is 
the brain's ability to bind the chemical neurotransmitter serotonin. 
Serotonin is critical to normal experiences of mood, emotion, pain, and 
a wide variety of other behaviors. On the figure, brighter colors 
reflect greater serotonin transporter binding; dull colors mean less 
binding capacity. This figure shows a decrease in the Ecstacy user's 
ability to remove this important neurotransmitter from the 
intracellular space, thereby amplifying its effects within the brain. 
This decrease lasts at least three weeks after the individual has 
stopped using Ecstacy. Given serotonin's critical role in many 
behavioral characteristics, one can speculate that this abnormality of 
the serotonin system might be responsible for some of Ecstasy's long-
lasting behavioral effects.
    Figure 2 also demonstrates the long-lasting effects that drugs can 
have on the brain. Here you can see dopamine transporter binding in 
four different adults. Brighter colors reflect greater dopamine binding 
capacity. The scan on the left is that of a non-drug user, the next is 
of a chronic methamphetamine user who was drug free for about three 
years when this image was taken, followed by a chronic methcathinone 
abuser who was also drug free for about three years. The last image is 
of the brain of an individual newly diagnosed with Parkinson's Disease. 
When compared with the control on the left, one can see the significant 
loss in the brain's ability to transport dopamine back into brain 
cells. Dopamine function is critical to emotional regulation, is 
involved in the normal experience of pleasure and is involved in 
controlling an individual's motor function. Thus, this long-lasting 
impairment in dopamine function might account for some of the 
behavioral dysfunctions that persist after long-term methamphetamine 
use.
    The application of these technologies is not only illuminating 
long-standing issues in our field but actually redirecting our overall 
approaches. For example, these and other brain imaging studies suggest 
we need to be looking into totally different areas of the brain than 
those traditionally pursued. We may find that behavioral components 
such as decision-making, impulse control, abstinence, craving and 
relapse are actually tied to some of these less explored regions. By 
expanding our exploration of the brain, at the molecular as well as 
more global levels, we will gain greater insight into all areas of the 
brain. All of these insights have come about because we have these new 
technologies. But to continue the pace of science they need to be 
exploited even more.
                     national treatment improvement
    A recent study supported by NIDA and the National Institute on 
Alcohol Abuse and Alcoholism estimates that drug abuse and addiction 
cost the American public more than $110 billion per year, and improving 
drug use prevention and treatment are the principal vehicles to reduce 
those costs. All of the advances I have mentioned so far have helped 
bring us to a point where we now have a strong scientific base to more 
systematically approach how we treat people with addictions. Just like 
with other illnesses, drug abuse professionals have at their disposal 
an array of quite useful tools to treat addicted individuals, and many 
of these tools have been supported by NIDA. We have developed readily 
available nicotine addiction therapies; we have brought to the world 
the most effective medications to date for heroin addiction; and we 
have standardized notable behavioral interventions, such as cognitive 
behavioral therapies and contingency management, that are effective in 
treating both adults and adolescents. However, there are a number of 
other promising therapies that have not yet been tested on a large 
scale or in diverse patient populations. This is one of the many 
reasons why we are launching the National Drug Abuse Treatment Clinical 
Trials Network.
    The establishment of this Network responds to a long-acknowledged 
need to use science to significantly improve drug abuse treatment. 
Building this Network is a major priority for the drug abuse field and 
was the principal recommendation of the Institute of Medicine's recent 
report Bridging the Gap Between Practice and Research. The plan is to 
establish an infrastructure that will enable the field to more rapidly 
test and bring new science-based treatments into real life settings. 
The Network we are establishing is modeled after those used 
successfully by other NIH institutes. Through this network, university-
based medical and research centers will form partnerships with 
community-based treatment providers to test and deliver an array of 
treatments, while simultaneously determining the conditions under which 
the novel treatments are most successfully adopted. NIDA plans to make 
four awards in the current fiscal year.
    In a related effort to enhance treatment, NIDA's medications 
development program is taking the first promising anti-cocaine drug 
medications into multisite Phase III Clinical trials. These trials will 
evaluate two innovative routes of administration for the medication 
selegiline, in the form of a transdermal patch and as a time released 
pill, to determine which is most beneficial to the populations being 
studied. NIDA is also on the verge of bringing the Nation a new anti-
opiate treatment, buprenorphine. One of the advantages of this 
medication is its ability to be administered in less traditional 
environments and brought into mainstream medical practice We expect to 
broaden treatment access to even more opiate addicts by having it 
available in office-based practices. Also in the treatment arena, NIDA 
will continue to aggressively pursue both an antidote and a medication 
to help with overdoses and addiction to the dangerous drug 
methamphetamine.
             applying the principles of prevention research
    In the prevention arena, NIDA is entering what many would consider 
the next generation of drug prevention research. That is, taking the 
fundamental principles of effective drug abuse prevention programming 
to the next level so that they are effectively integrated into every 
community and social system in the country. Our research agenda will 
also reflect our commitment to have prevention interventions directed 
at the specific needs of different groups of youths at risk for drug 
abuse, including members of different ethnic groups and those living in 
different socioeconomic situations. Preventing all youth from initial 
drug use is not only the right thing to do, but is also economically 
responsible.
    We will also continue to support research that prevents adults, 
especially women of child bearing years, from using drugs. NIDA 
research continues to find subtle cognitive effects in children born to 
mothers who abuse drugs like crack. This is especially disturbing in 
light of a recent analysis of studies that estimated that subtle 
deficits in IQ and language development will occur in up to 80,550 
cocaine-exposed children each year. Although the developmental effects 
are subtle, special education to prevent these children from failing in 
the school environment could cost up to $352 million per year according 
to a 1998 Brown University analysis. Continued investments in 
prevention research will help to reduce this spiraling cost of drug use 
to society.
             government performance and results act (gpra)
    The activities of the NIDA are covered within the NIH-wide Annual 
Performance Plan required under the Government Performance and Results 
Act (GPRA). The fiscal year 2000 performance goals and measures for NIH 
are detailed in this performance plan and are linked to both the budget 
and the HHS GPRA Strategic Plan which was transmitted to Congress on 
September 30, 1997. NIH's performance targets in the Plan are partially 
a function of resource levels requested in the President's Budget and 
could change based upon final Congressional Appropriations action. NIH 
looks forward to Congress' feedback on the usefulness of its 
Performance Plan, as well as to working with Congress on achieving the 
NIH goals laid out in this Plan.
                         25 years of discovery
    This year, NIDA celebrates twenty five years of progress in 
understanding, treating and preventing drug addiction. The world has 
seen many changes over this time period, including a reduced burden of 
disease for its citizenry, thanks in large part to our Nation's strong 
biomedical research enterprise. Addiction treatments for example have 
helped to not only reduce drug use but the spread of infectious 
diseases such as HIV, while also diminishing the health and social 
costs that result from addiction, and decreasing criminal behavior.
    We have a lot to be proud of, but we still have much more to 
accomplish. There is no better time than a 25th anniversary, to reflect 
on the profusion of knowledge gained since an organization's inception. 
It is also an ideal time to chart one's course for the future. A 
continued investment into our research will allow us to cultivate the 
kinds of activities needed to reduce the devastating consequences of 
drug abuse and addiction.
                                 ______
                                 
                Prepared Statement of Enoch Gordis, M.D.
    Mr. Chairman and Members of the Committee: The fiscal year 2000 
budget request for NIAAA is $248.9 million, excluding AIDS, an increase 
of $5.8 million or 2.4 percent over the current fiscal year 1999 
amount. Including the estimated allocation for AIDS, total support 
proposed for NIAAA is $265.5 million, an increase of $6.2 million over 
the fiscal year 1999 appropriation. Funds for NIAAA AIDS research are 
included in the Office of AIDS research budget request. The total NIAAA 
budget request includes support for the following NIH Areas of Special 
Emphasis: biology of the brain, new preventive strategies against 
disease, development of therapeutics, and genetics of medicine.
    The mission of the NIAAA is to improve, through its research, 
prevention and treatment of alcohol disorders and their enormous 
consequences. Among the nearly 14 million adult Americans who suffer 
from alcohol disorders, 100,000 die of alcohol-related causes each 
year, according to NIAAA epidemiology research and American Psychiatric 
Association diagnostic criteria, and to independent researchers 
published in #T3Scientific American, respectively. The NIAAA's 
epidemiology research reveals that more than four times#T3 that many, 
442,000, spend time in acute-care hospitals. Of the estimated $166 
billion that alcohol disorders cost society annually, more than $22 
billion is attributable to health care and more than $119 billion to 
lost productivity, according to a study conducted by NIDA and NIAAA.
                                genetics
    Since the risk of developing alcoholism is influenced about equally 
by genes and environmental factors, one of NIAAA's tasks is to identify 
the genes that are involved. The search has been a productive one. 
Investigators from the NIAAA-funded Collaborative Studies on the 
Genetics of Alcoholism, or ``COGA,'' have identified four chromosomal 
regions likely to contain genes that influence alcohol-related 
behavior. NIAAA's intramural researchers independently identified one 
of the same regions and identified a fifth site. The task ahead is to 
identify the genes themselves, so that scientists may exploit the 
potential of this knowledge for more effective medication design and 
more targeted preventive interventions. Discovery of these chromosomal 
regions provides a crucial starting point for the search. In October, 
NIAAA will make COGA's powerful data set available to as wide a 
scientific audience as possible, to expedite the search for specific 
genes implicated in alcoholism.
    Using tools of molecular biology, NIAAA-supported investigators 
demonstrated an association between a gene mutation in fruit flies and 
an alcohol-induced behavior. This research is a striking demonstration 
of how the study of lower organisms can help us understand human 
biology, and has garnered a Presidential Early Career Award for 
Scientists and Engineers for one of its investigators. Fruit flies have 
in common with humans chemical pathways essential to survival. In 
tracking one of these chemicals--``cAMP''--researchers found that flies 
with a genetic mutation that makes them more sensitive to alcohol also 
produce less cAMP than do genetically intact flies. As seen here, flies 
with this mutation lost their coordination on exposure to alcohol fumes 
more rapidly than did other flies. Giving these mutated flies 
substances that increased cAMP levels made them less sensitive to 
alcohol. These findings suggest a link between this gene mutation, 
production of cAMP, and an alcohol-related behavior. In the future, 
findings such as this will provide guidance in the search for new sites 
for interventions.
                neuroscience and medication development
    Because genes, proteins, molecular biology, and neuroscience are 
closely related, studies in any one of these areas serve to inform the 
others, and all of them are highly relevant to drinking behavior. For 
example, genes encode proteins that play crucial roles in chemical 
pathways that influence behavior. For some time, scientists have known 
that alcohol affects several neuroreceptors in the central nervous 
system. #T3How alcohol affects these receptors remains an important 
research question. In an ingenious series of experiments, NIAAA-
supported researchers substituted protein sections of these 
neuroreceptors with genetically engineered sections, one at a time. 
Through this process of elimination, they found the part of the 
receptor molecule that was indispensable to alcohol's action on the 
nerve cell. This type of research, in which investigators are beginning 
to examine intimate details of the structure of receptors, will serve 
as a guide to designing medications that counteract alcohol's effects, 
in the future.
    The NIAAA's efforts include not only this important basic-science 
research, but also testing of existing new medications for their 
utility in treatment. Project COMBINE, a large NIAAA-funded clinical 
trial, is testing two medications, naltrexone and acamprosate, that 
represent a new generation of pharmaceuticals for the treatment of 
alcoholism. These medications act directly on pathways thought to be 
important components of addiction by blocking rewarding sensations 
associated with alcohol or blocking aversive effects of abstinence, 
respectively. Both medications are being tested alone and in 
combination with behavioral therapies refined from results of Project 
MATCH, a previous NIAAA-supported clinical trial that compared outcomes 
of various behavioral treatments. NIAAA neuroscience research provides 
the type of information that, after testing for safety and efficacy in 
the laboratory and in small-scale human trials, then large-scale 
clinical trials, may result in medications with clinical utility.
                               prevention
    Just as careful, controlled trials are needed for medication 
development, they are equally necessary for proving the effectiveness 
of prevention efforts. The NIAAA has an extensive prevention portfolio 
that addresses a variety of topics, such as drunk driving and underage 
drinking, that are in various stages of investigation. Alcohol use 
among youth is a major area of concern at the Institute. Preventing 
young people from developing alcohol disorders is, of course, 
preferable to treating them. The NIAAA and CSAP are cofunding research 
to determine effects of alcohol advertising on initiation and 
continuation of drinking among youth. Recently, the Surgeon General 
introduced an initiative aimed at preventing underage drinking. The 
NIAAA is the leading contributor to this new effort.
    College-age drinking is a difficult and widely publicized problem, 
and one that receives special emphasis in NIAAA's research. An example 
of a recent finding in this area is described in this poster, which 
summarizes data from one of the few randomized, controlled trials 
conducted in this population to date. Previously, we had informed the 
Committee that a brief, one-time session that corrected high-risk 
college students' expectations about how much their peers drank 
appeared to reduce these students' drinking and alcohol-related 
problems. The recently published results of this trial support that 
assertion. As this 2-year follow-up graph indicates, high-risk students 
who received the intervention declined in their rates of drinking and 
harmful consequences significantly more than did high-risk students who 
received no intervention. This excellent study is a rare example of 
interventions that have been evaluated in this manner. Research has 
yielded several promising remedies that await similar--and necessary--
rigorous testing, and additional investigations are underway. The 
Institute's National Advisory Council also has formed a subcommittee on 
college-age drinking, cochaired by the president of the University of 
Notre Dame and an eminent alcohol researcher. Ten college presidents 
and 12 leading researchers comprise this subcommittee. After assessing 
the entire college-drinking area, this subcommittee will advise the 
Institute about productive research avenues.
    NIAAA epidemiology data dramatically revealed that earlier age of 
drinking onset is associated with increased likelihood of lifetime 
alcohol dependence. The reasons for this phenomenon are now subject to 
investigation. On one hand, it is possible that neurobiological changes 
in the adolescent brain are related to this increased risk; on the 
other hand, various psychosocial factors may be involved. Results from 
research in this key area will add to scientists' understanding of how 
alcoholism develops and will provide direction in the search for 
effective interventions.
                         fetal alcohol syndrome
    Fetal alcohol syndrome (FAS) remains the leading cause of 
preventable birth defects in the United States, and the NIAAA is 
approaching this issue from a variety of angles. In animal studies, 
scientists are identifying biological changes that occur in embryos 
exposed to alcohol. Of particular interest is the neural crest, a group 
of embryonic cells that later develop into cells of the brain and 
spinal cord, among other structures. The timing of developmental events 
that occur in neural crest cells is critical, and the changes that 
alcohol causes in them are now being related to FAS. Researchers also 
have established that a class of molecules called free radicals, which 
are generated by alcohol and other substances, damage neural crest 
cells and that antioxidants mitigate that damage. Diagnosis of FAS at 
birth by physical characteristics is difficult; investigators therefore 
are searching for a surrogate chemical indicator, suitable for clinical 
diagnosis, of fetal damage induced by alcohol. NIAAA-supported 
scientists have identified a potential biomarker, an elevated level of 
a protein, that may lead to methods of prenatal diagnosis of FAS and, 
thus, early intervention.
    One of the Institute's tasks is to prevent FAS more efficiently, 
especially by reaching women who have not had access to the message 
that alcohol damages unborn children. The NIAAA currently is conducting 
large-scale research on how to prevent alcohol use among pregnant women 
and is stimulating further research on this topic.
                                outreach
    In addition to its ongoing efforts to disseminate information, the 
Institute is engaged in several special projects aimed at raising 
public awareness and improving clinicians' skills in dealing with 
patients who have alcohol disorders. One of these projects is a 
curriculum that enables medical schools to integrate information on 
alcohol disorders into their programs. This substantial curriculum, 
shown here, is entitled A Medical Education Model for the Prevention 
and Treatment of Alcohol Use Disorders. Too often, health practitioners 
have received little training in how to diagnose and treat their 
patients' alcohol problems, and increasingly busy health practitioners 
sometimes do not adequately address them. This omission has significant 
medical and social consequences. The curriculum shown here enables 
students and physicians to recognize alcohol-related problems and to 
intervene more efficiently and productively. Ultimately, patients are 
the beneficiaries of this valuable resource.
    One of the Institute's goals is to translate findings from alcohol 
research into applications that can be implemented in a variety of 
clinical settings. In response to requests from State officials and 
others, the Institute held its first Research-to-Practice Forum in New 
York, in partnership with the State and with other Federal and national 
organizations. During this NIAAA-led meeting, scientists, 
administrators, and providers discussed methods of incorporating 
current research findings on alcohol disorders into clinical practice. 
Another forum will be held in North Carolina in November, and the State 
of Hawaii has requested a similar event, to be held in March.
    Although alcohol is a highly prevalent disorder in our society, 
only a fraction of the people who would benefit from treatment are 
getting the help they need. To increase the number of people who can 
improve their lives through treatment and avoid the disastrous 
consequences of drinking, the Institute is embarking on a new project: 
National Alcohol Screening Day. The first will take place in 
communities across the country on April 8. This event is being offered 
by the NIAAA in partnership with the National Mental Illness Screening 
Project and will offer free screening and referral services to anyone 
who asks for them. It will also educate the public about alcohol 
disorders. The Institute's goal is to enlist 2,000 sites, 650 college 
campuses among them, that will offer these services. Several private 
organizations have joined the NIAAA, which is the major funder of the 
event, in supporting National Alcohol Screening Day. An additional 19 
prominent national organizations have endorsed it.
    A partnership between the NIAAA and the Kettering Foundation 
promises to raise the Nation's awareness of alcohol disorders and their 
consequences. For the past 16 years, the Foundation has chosen a topic 
of public interest and has sponsored community discussions throughout 
the Nation. The topic for this year's National Issues Forums is alcohol 
use and the public's attitude toward alcoholism. The goal of the Forums 
is to help an informed public take an active role in policy decisions. 
At the National Press Club, Forum representatives will summarize, for 
the media, the outcome of the national discussions and will describe 
the direction the citizenry has taken on alcohol issues. A PBS 
presentation will be the final event in this valuable effort.
                                summary
    Alcoholism is a complex disease, not only because it is influenced 
by several genes and by multiple biological interactions, but also 
because it is influenced by many other factors, such as family and 
social environment. The NIAAA maintains a research portfolio that 
balances these complex issues. We will continue to identify the 
biological mechanisms that predispose people to alcohol disorders and 
to develop methods of altering those mechanisms. At the same time, we 
recognize that behavioral interventions can prevent people from 
engaging in activities that trigger biological mechanisms involved in 
alcoholism, and our portfolio reflects that understanding, as well. All 
of this research is occurring in the context of collaborations with 
public and private partners and of outreach to the people to whom it 
matters most: those at risk of suffering from alcohol disorders or 
those at risk of suffering the consequences of someone else's abuse of 
alcohol--and that represents all of us. The activities of the NIAAA are 
covered within the NIH-wide Annual Performance Plan required under the 
government Performance and Results Act (GPRA). The fiscal year 2000 
performance goals and measures for NIH are detailed in this performance 
plan and are linked to both the budget and the HHS GPRA Strategic Plan, 
which was transmitted to Congress on September 30, 1997. The NIH 
performance targets in the Plan are partially a function of resource 
levels requested in the President's Budget and could change, based on 
final Congressional Appropriations action. NIH looks forward to 
Congress' feedback on the usefulness of its Performance Plan, as well 
as to working with Congress on achieving the NIH goals laid out in this 
Plan.
                                 ______
                                 
              Prepared Statement of Dr. Patricia A. Grady
    Mr. Chairman and Members of the Committee: The President in his 
fiscal year 2000 budget has proposed that the National Institute of 
Nursing Research (NINR) receive $65.3 million, an increase of $1.5 
million over the comparable fiscal year 1999 appropriation. Including 
the estimated allocation for AIDS, total support provided for NINR is 
$71.73 million, an increase of $1.7 million over the fiscal year 1999 
appropriation. Funds for NINR efforts in AIDS research are included 
within the Office of AIDS Research budget request.
    NINR-supported nursing research provides a scientific base for 
patient care and is used by many disciplines among healthcare 
professionals--especially by the nation's 2.5 million nurses. NINR-
supported research is not disease specific, nor is it dedicated to a 
particular age group or population. Nursing research addresses the 
issues that examine the core of patients' and families' personal 
encounters with illness, treatment, and disease prevention. NINR's 
primary activity is clinical research, and most of the studies we 
support directly involve patients. The basic science we support is 
linked to patient problems.
    Nursing researchers are essential in defining and confronting the 
compelling health challenges of the 21st century. These challenges will 
reshape not only health research and health care, but the way Americans 
view the importance of good health in their lives. Nursing research is 
developing creative solutions to address these challenges. I will now 
describe some of these nursing research initiatives and their relevance 
to the present and future health of the nation.
                  chronic illness--a complex challenge
    The increase in chronic illnesses results from the increase in the 
aging of the population and technological advances that transform acute 
illness into chronic illness, such as AIDS and heart disease. Chronic 
diseases in turn have created complex challenges for the health care 
system as it attempts to respond to the needs of frail patients with 
multiple diseases, some of whom are at end of life. Furthermore, the 
help that family members require in managing their burden of care has 
become a major issue in health and social policy. Nursing research has 
developed a number of innovative scientific projects to address the 
concerns of caregivers at home, as well as programs designed to ease 
the symptoms of chronic illness and prolong quality of life.
    A recent study has shown how a transitional care model can improve 
the health of older adult patients with common medical and surgical 
problems. This study used a multidisciplinary approach to assess care 
needs and included follow-up in the home delivered by expert nurses. 
Nurse experts used their clinical judgment to determine the nature, 
intensity and frequency of hospital and home care visits for their 
patients. Reduction of hospital re-admissions for high risk older 
adults with complex treatment regimens, reduced length of hospital stay 
and reduced costs to the health care system were among the study 
findings. The investigator is now applying the transitional care model 
specifically to older adults with congestive heart failure, a condition 
which carries poor prognosis and high hospitalization rates for all 
adult patients.
    Another research advance reveals that estrogen limits damage to 
brain tissue from ischemic stroke or brain attack. In studies using an 
animal model for human ischemic stroke, investigators found that 
females with natural or injected estrogen experienced only about one-
third as much brain damage as males. These finding are complementary to 
the findings in humans that estrogen exercises a protective effect for 
women against coronary heart disease. Researchers also tested whether 
estrogen could have the same protective effect in male animals. 
Estrogen did in fact provide a significant reduction of brain damage 
after acute stroke in the male animals. Furthermore, the presence or 
absence of testosterone did not affect the favorable outcome. This 
basic research has important findings for future clinical 
investigations.
    NINR's focus on chronic illness will provide a new emphasis in 
fiscal year 2000 on symptom management of children with asthma. The 
death rate for asthma has doubled since 1980 among children 5 to 14 
years of age. NINR-supported research will test nursing interventions 
to decrease the severity and frequency of asthma attacks, monitor 
airway inflammation, and manage daily care.
                           health disparities
    In keeping with its important theme of individualizing care, NINR 
continues to refine interventions that are responsive to age, gender, 
cultural identity, and socioeconomic environments. Nurse researchers 
are especially conscious of the current demographic trends that point 
to disparities in access to and utilization of health care services by 
Hispanic, African-American, and Asian ethnic groups. NINR is committed 
to supporting research that will address these disparities as a 
significant public health problem.
    An NINR-funded study showed that interventions have reduced high 
blood pressure in inner city young African-American males. In this 
study, an intervention was directed at this particularly hard-to-reach 
population which has the lowest rate of awareness, treatment and 
control of high blood pressure of any population group in the United 
States. At the two-year study's mid-point, blood pressure control 
increased in the young men in the intervention group and numbers of 
emergency room visits decreased.
    NINR will continue to expand its research support next year in the 
area of health disparities by examining the problem of low birth weight 
in minorities. The incidence of low birth weight disproportionately 
affects minorities and requires culturally sensitive approaches and 
interventions to improve birth weight at delivery. We will identify 
changing risk factors and will continue to develop and test effective 
pre-and post-natal care interventions based on new research results.
            health promotion and disease prevention research
    NINR is improving health and preventing disease. The Cardiovascular 
Health in Children (CHIC) project demonstrated that an eight-week 
education and exercise intervention conducted in rural and urban 
elementary schools across North Carolina significantly reduced risk 
factors for cardiovascular disease in pre-adolescents. Their 
cholesterol levels and body fat were reduced, aerobic power was 
increased, and diastolic blood pressure did not rise as much as in the 
control group. The investigator expanded the study and is now testing 
the intervention in 1,200 rural, ethnically diverse 6th through 8th 
graders. Preliminary results from this expanded study indicate similar 
benefits. The study suggests that providing the program throughout the 
nation for longer periods of time could decrease the high incidence of 
cardiovascular disease.
    NINR-supported research indicates that ``coping skills training,'' 
which involves role-playing in difficult social situations increases 
the control of diabetes in young adults. We know that intensive 
diabetes therapy reduces complications in adolescents, although young 
people tend to be the most difficult age group to manage for diabetes. 
Findings show that they know what to do, but peer pressure is hard to 
resist, and they eat unwisely and do not balance exercise with 
appropriate blood sugar levels. After a three-month intervention test 
period, findings indicate that members of the intervention group had 
consistently lower glucose levels and were confident that they could 
manage their disease as they went about their typical adolescent lives. 
This short term study has promise of long term benefits for teens, who 
otherwise have poorer diabetic control than adults.
    NINR plans to enhance the emphasis on diabetes research in fiscal 
year 2000 by looking at diabetes self-management strategies that 
include cultural, ethnic, and age-related factors. NINR will also 
identify ways to facilitate adherence to regimens that require close 
adjustments in medication and food intake.
                  quality of care and quality of life
    NINR has been designated as the lead Institute to coordinate 
research on end-of-life palliative care, and is committed to improve 
how health care professionals interact with those who are dying. 
Through scientific research, we shall focus on patients at the end of 
life so that they receive compassionate and life-affirming health care. 
Health care professionals must make a difficult choice on the continuum 
between cure-oriented treatments or comfort-oriented palliative care. 
Currently there is a tendency to use all means to extend life, 
regardless of the patient's comfort or, in many cases, expressed 
wishes. The findings from NINR's research portfolio have contributed 
much to palliative care, especially in symptom management of pain and 
other physical stressors, such as nausea, shortness of breath, and 
profound weight loss. Research on caregiver training and support is 
another critical area. Bioethical issues and the decision-making 
processes of patients, their families, and clinicians, including 
procedures to guide treatment options and palliative care, are also 
part of the nursing research agenda. Recently, researchers found that 
according to family reports, clinicians underestimate the level of pain 
and other physical distress of dying patients. Research will facilitate 
more options and better use of resources, such as by delaying or 
avoiding expensive hospitalization for symptoms that could have been 
managed by hospice or home-health nurses. Clearly, changes based on 
scientific evidence are essential, and NINR is pleased to have a 
central role in addressing this major health care challenge.
             government performance and results act (gpra)
    The activities of NINR are covered within the NIH-wide Annual 
Performance Plan required under the Government Performance and Results 
Act (GPRA). The fiscal year 2000 performance goals and measures for NIH 
are detailed in this performance plan and are linked to both the budget 
and the HHS GPRA Strategic Plan which was transmitted to Congress on 
September 30, 1997. NIH's performance targets in the Plan are partially 
a function of resource levels requested in the President's Budget and 
could change based upon final Congressional Appropriations action. NIH 
looks forward to Congress' feedback on the usefulness of its 
Performance Plan, as well as to working with Congress on achieving the 
NIH goals laid out in this Plan.
                                 ______
                                 
              Prepared Statement of Dr. Francis S. Collins
    Mr. Chairman, and members of the Committee: I present here the 
President's budget request for the National Human Genome Research 
Institute (NHGRI) for fiscal year 2000, a sum of $271 million, an 
increase of $6 million (or 2.4 percent) above the fiscal year 1999 
comparable level. Including the estimated allocation for AIDS, total 
funding proposed for NHGRI is $276 million. Funds for NHGRI efforts in 
AIDS research are included in the Office of AIDS Research budget 
request.
                   genome sequencing at the forefront
    For the first time, in December 1998, an international team of 
scientists, supported by NHGRI and the Medical Research Council of 
Great Britain, published the complete genome sequence of a multi-
cellular animal, the tiny roundworm Caenorhabditis elegans. At 97 
million DNA bases and over 19,000 genes, its genome is the largest and 
most similar to humans of any sequenced thus far. All of the worm 
sequence data is freely accessible. Although it is barely visible, C. 
elegans contains many of the same body systems as humans, which can now 
be studied in entirely new ways. New genomic studies of the worm 
promise to shed light on cancer, birth defects, aging, and neurological 
disorders. About 80 percent of the genes that have been implicated in 
human illness have counterparts in the worm. Science magazine hailed 
the completion of the C. elegans sequence as one of the 10 most 
important scientific discoveries of the year.
    Success in completing the worm genome sequence and the loud clamor 
from the scientific community for more sequence from many organisms 
compelled genome project leaders last fall to move up the deadline for 
completing the human genome sequence to 2003. The technology to do so 
is at hand. Indeed, as of early 1999, the public sequence database 
contained over 400 million bases of precisely mapped finished and 
nearly finished human genome sequence. This amounts to 13 percent of 
the total 3 billion. In addition to the plan's bold new proposal for 
finishing a complete, highly accurate human genome sequence in 2003, it 
also promises to deliver a ``working draft'' of the sequence by the end 
of 2001. Though that sequence will be of lower quality, it will 
nevertheless be very useful for finding genes and other genomic 
features, which will result in significant time and cost savings for a 
large number of scientific projects. Because more than half of the 
genes are predicted to lie in the gene-rich third of the genome, the 
finishing effort during the next three years will focus on such 
regions. All sequence data produced with NHGRI funds will be deposited 
in public databases within 24 hours of quality checking. Other goals in 
the plan emphasize new areas of study, including better sequencing 
technology, human genetic variation, gene function, bioinformatics, the 
study of model organisms, training, and new priorities for ethical, 
legal, and social implications (ELSI) activities that will undergird 
health research for decades to come.
    The demand for genomic sequence has also made it an attractive 
commodity in the private sector. This past year, two private companies 
announced proposals to sequence the human genome as a for-profit 
venture. Both plan to use strategies unlikely to produce a complete, 
highly accurate sequence, though a great deal of data will be 
generated. Members of the scientific community continue to support the 
level of quality, completeness, and public accessibility promised by 
the publicly funded Human Genome Project. Because one of the companies, 
Celera Genomics, intends ultimately to deposit some of its sequence 
into a public database, NHGRI is exploring opportunities for 
collaboration to maximize our respective strengths. Just last month, 
for example, Celera and an NHGRI-supported scientist at the University 
of California, Berkeley, signed an agreement to collaborate on 
sequencing the fruit fly genome.
    But even when the first human genome sequence is completed, 
scientists will continue to sequence many additional genomes from model 
organisms and disease-causing bacteria and viruses. In fiscal year 
1998, NHGRI awarded grants for technology development projects to 
increase automation, miniaturization, and integration of current 
approaches to further increase throughput and reduce cost. This year, 
NHGRI launched a program to integrate the most promising of these new 
technologies into large-scale genome sequencing labs, where they will 
be advanced through collaborations between technology developers and 
users.
    The laboratory mouse has become the leading animal model for 
studying biological processes in mammals. With broad input from the 
scientific community, NIH has developed a strategic plan for mouse 
genomics. The NHGRI is leading a bold new trans-NIH initiative to 
sequence the mouse genome. The first grants will be awarded in 
September of 1999, with the expectation that sequencing will ramp up 
rapidly so as to have a high quality draft of the mouse genome sequence 
by 2003 and the complete sequence by 2005. This sequence will be 
critical to understanding the function of the human sequence. A number 
of trans-NIH initiatives are also developing new mouse models for 
disease, easier access to resources, and better training of 
specialists.
    In the years ahead, information about DNA sequence variation, a 
natural property of all genomes, will be critical for progress in human 
genetics research. The most common differences in the human genome, 
single base-pair differences called ``snips'' (for single nucleotide 
polymorphisms or SNPs), occur about every 1,000 DNA bases. Many common 
illnesses will most likely be influenced by the presence of SNPs in 
vulnerable parts of the genome, so developing a dense map of SNPs will 
greatly aid research on diseases such as diabetes, many cancers, and 
cardiovascular disease. Understanding individual genetic variations may 
give researchers new clues about why some people are susceptible to a 
particular illness and others are not. It has already spawned a new 
area of science called ``pharmacogenomics,'' which aims to maximize the 
benefits of medicines by identifying individuals for whom the drugs are 
most likely to be effective and safe. With broad support from 16 NIH 
institutes and centers, NHGRI has coordinated a large effort to find 
and map SNPs and deposit them into a public database.
    Availability of complete genome sequences is enabling a new 
approach to biology called functional genomics--understanding how DNA 
controls the function of complex biological systems in an organism. New 
methods for studying functional genomics include comparison and 
analysis of sequence patterns, large-scale analysis of gene products, 
and systematic approaches to disrupt gene function.
                implications for individuals and society
    Examination of the ethical, legal, and social implications (ELSI) 
of genome research has always been an integral and essential component 
of the Human Genome Project. The NHGRI ELSI program has generated a 
substantial body of scholarship in the areas of privacy and fair use of 
genetic information; safe and effective integration of genetic 
information into clinical settings; ethical issues surrounding genetics 
research; and professional and public education. The results of this 
research are being used to guide the conduct of genetics research and 
the development of related health professional and public policies. The 
new five-year plan describes new ELSI goals, which include: (1) 
examining the issues surrounding the completion of the human DNA 
sequence and the study of human genetic variation; (2) examining issues 
raised by the integration of genetic technologies and information into 
health care and public health activities; (3) examining issues raised 
by the integration of knowledge about genomics and gene-environment 
interactions into non-clinical settings; (4) exploring ways in which 
new genetic knowledge may interact with a variety of philosophical, 
theological, and ethical perspectives; and (5) exploring how racial, 
ethnic, and socioeconomic factors affect the use, understanding, and 
interpretation of genetic information, the utilization of genetic 
services, and the development of policy.
                  progress in human genetics research
    Last August, NHGRI's Division of Intramural Research celebrated its 
fifth year as a cutting-edge research program working to translate the 
tools of the Human Genome Project into knowledge about human genetic 
disease and its diagnosis and treatment. In the past year alone, NHGRI 
intramural scientists have discovered a number of important gene 
variations associated with neurological disorders, cancer, and other 
human diseases. Mouse studies have proved invaluable this past year in 
providing new knowledge about human hereditary disorders, including 
Huntington disease, lissencephaly, and Hirsch sprung disease.
    Prostate Cancer.--In the past, genetic contributions to most common 
diseases were virtually impossible to sort out. Hereditary 
predisposition to cancer, for example, usually cannot be explained by a 
single genetic event, and environmental and possible socio-economic 
contributions are involved. NHGRI intramural studies of prostate cancer 
provide a compelling example of how genome project tools are bringing 
clarity to such scientifically murky health problems. According to the 
National Cancer Institute, prostate cancer is the most common form of 
cancer among men. Because prostate cancer clusters in some families, 
researchers have suspected the disorder has a strong genetic component. 
That suspicion was borne out two years ago when NHGRI intramural 
researchers and their coworkers located a region on chromosome 1 that 
appears to contain a gene variation (HPC1) that predisposes men to 
prostate cancer. Less than six months ago, the same team of NHGRI 
researchers found a second site, on the X chromosome (HPCX), that also 
appears to contribute to prostate cancer. And there will likely be 
others. In this way, Human Genome Project tools now allow scientists to 
develop a comprehensive understanding of the causes of cancer, and will 
ultimately provide a fundamentally new paradigm for sorting out the 
hereditary, environmental, and socio-economic bases of human illness.
    While prostate cancer is common among all U.S. males, it is 
especially common among African-American men. They are 35 percent more 
likely than their European counterparts to develop the disease and more 
than twice as likely to die from it. Researchers based at NHGRI and 
Howard University are heading a nationwide study that applies the full 
force of genome technologies to attempt to explain the causes of this 
apparent disparity. Are men of African descent inherently more 
susceptible to prostate cancer, and what role do other community-based 
factors play? The Howard-NHGRI study is being carried out primarily by 
black scientists and doctors located in seven study centers around the 
country. They are taking the genome project to the neighborhoods. So 
far, 28 large African-American families with several affected men have 
volunteered medical histories and blood samples that will be used to 
zero in on prostate cancer-related gene alterations on chromosomes 1, 
X, and others. In the next few years, these studies will bring a much 
broader understanding of this very common disorder, and ideally suggest 
new ways to intervene, treat, or even prevent it.
    Hereditary Deafness.--Using the recently completed physical map of 
human chromosome 7, NHGRI intramural scientists and their colleagues 
have identified an altered gene that results in improper development of 
the inner ear and is thought to cause as much as 10 percent of 
hereditary deafness This discovery provides detailed knowledge about a 
common cause of hereditary deafness and marks the beginning of a better 
basic understanding of syndromes affecting hearing.
    Parkinson Disease.--NHGRI intramural researchers have also 
identified another genetic piece to the baffling puzzle of Parkinson 
disease (PD). The finding bolsters their hypothesis that defects in a 
pathway for disposing of flawed proteins are responsible not only for 
PD, but for several other late-onset neurodegenerative disorders.
    Advanced Technologies for Studying Genetic Disease.--In a new 
application of the so-called ``DNA chip'' threads of DNA layered on a 
postage-stamp sized piece of silicon NHGRI scientists and their 
colleagues are using large-scale ``tissue'' chips to illuminate the 
process of cancer development. They also predict the tissue chip will 
help researchers learn how to distinguish subgroups of cancer patients 
and eventually predict which ones will respond to specific therapies. 
The tissue chip permits processing of massive numbers of biological 
samples, making it possible for researchers to simultaneously compare 
DNA, RNA, and proteins, in cancer tissues from hundreds or thousands of 
patients. In one study, researchers used the device to analyze the 
activity of several genes believed to play a role in breast cancer. 
Using the technology, tissue analysis that once took 6-12 months can be 
accomplished in about a week.
             government performance and results act (gpra)
    NHGRI activities are covered within the NIH-wide Annual Performance 
Plan required under the GPRA. The fiscal year 2000 performance goals 
and measures for NIH are detailed in this performance plan and are 
linked to both the budget and the HHS GPRA Strategic Plan which was 
transmitted to Congress on September 30, 1997. NIH's performance 
targets in the Plan are partially a function of resource levels 
requested in the President's Budget and could change based upon final 
Congressional Appropriations action. NIH looks forward to Congress' 
feedback on the usefulness of its Performance Plan, as well as to 
working with Congress on achieving the plan's goals.
    Mr. Chairman, and Members of the Committee, the seeds of the 
genetics revolution were planted nearly a half-century ago, when James 
Watson and Francis Crick unraveled the double helix structure of the 
DNA molecule, the thread of life. On the threshold of this new 
millennium, genetics has grown to encompass nearly every aspect of 
health research and will surely transform not only how we diagnose and 
treat disease in the future, but also how we stay well.
                                 ______
                                 
            Prepared Statement of Dr. Judith L. Vaitukaitis
    Mr. Chairman and Members of the Committee: I am pleased to present 
the President's budget for the National Center for Research Resources 
(NCRR) for fiscal year 2000, a sum of $469.7 million, an increase of 
$11 million (or 2.4 percent) above the comparable fiscal year 1999 non-
AIDS appropriation. Including the estimated allocation for AIDS in both 
years, total support proposed for NCRR is $568.1 million, an increase 
of $13.3 million over the fiscal year 1999 appropriation.
    It is a pleasure once again to have the opportunity to discuss the 
accomplishments and future directions of NCRR. The classic picture of 
the lone scientist making great discoveries in a small laboratory is a 
faded image of the past. Research, because of its complexity and use of 
many sophisticated technologies, has by necessity become 
multidisciplinary. Unlike the other components of NIH, which focus on 
particular diseases, organ systems, or areas of research, NCRR supports 
the infrastructure--such as sophisticated research facilities, advanced 
instrumentation, and animal models of human disease--that sustains 
today's multifunctional research enterprise. NCRR's nationwide networks 
of General Clinical Research Centers, Biomedical Technology Research 
Centers, Regional Primate Research Centers, and Research Centers in 
Minority Institutions enable physician investigators and basic 
scientists to use sophisticated research tools to define the causes of 
disease, to develop new preventive strategies and to develop and test 
new drugs to assess novel therapies for diseases that affect majority 
as well as minority populations in the United States. By developing and 
supporting research infrastructure and actively promoting initiatives 
to encourage resource sharing, NCRR facilitates, or catalyzes, 
biomedical research and stretches the research dollar. Each year more 
than 20,000 investigators, supported by more than $2.3 billion in 
primary research support provided by the NIH categorical institutes, 
use NCRR-supported research resources. Those investigators generate an 
impressive array of cutting-edge scientific discoveries. For example, 
animal studies conducted at an NCRR-supported primate research center 
enabled development and testing of a novel chemical agent for early 
diagnosis of Parkinson's disease, which affects about 1 million 
Americans, according to the American Parkinson Disease Foundation. This 
brain imaging technique also shows promise in ongoing human studies. In 
the field of structural biology, NCRR-supported biomedical technology 
centers have offered scientists an unprecedented, in-depth look at the 
three-dimensional structures of molecules, thus providing new insights 
into the molecular underpinnings of health and disease.
    Scientists using an NCRR-supported synchrotron light source for x-
ray crystallography have determined the three-dimensional detailed 
structure of a potassium ion channel protein. The structure shows how 
the channel can selectively allow potassium ions to pass through. 
Investigators at the General Clinical Research Center at the University 
of Utah determined that a gene responsible for benign familial neonatal 
convulsions is located on chromosome 20. Affected children typically 
have seizures during the first 4 days of life, but the seizures 
spontaneously disappear between 2 and 15 weeks of age. Structural 
studies of the gene showed that it encodes a potassium channel protein 
that has a single amino acid mutation. The resulting dysfunction allows 
potassium ions to flow into the cell in an inappropriate fashion, 
thereby altering the excitability of nerve cells and causing epilepsy.
                            genetic medicine
    Government-and industry-sponsored research groups in the United 
States, Europe, and Japan are working to decode the approximately 3 
billion building blocks of the human genome. This project, which has a 
2003 target date for completion, will profoundly enhance the future 
prospects of genetic medicine and gene therapy. NCRR, in collaboration 
with the National Cancer Institute, the National Heart, Lung, and Blood 
Institute, the National Institute of Diabetes, Digestive and Kidney 
Diseases, the National Institute for Allergy and Infectious Diseases 
and the National Institute of Arthritis, Musculoskeletal and Skin 
Diseases, supports three National Gene Vector Laboratories. 
Investigators at those sites develop and test gene vectors, which are 
usually harmless viruses or other substances that transport healthy 
genes into cells to replace ``sick'' genes. Although gene vectors must 
be harmless when used in gene therapy, unwanted side effects can occur 
and must be carefully evaluated. To facilitate gene vector development, 
NCRR plans to support toxicology testing of specific classes of gene 
vectors through the National Gene Vector Laboratories. Individual 
investigators who use these vectors will thereby be saved the time 
involved in repeating toxicology studies that already have been done.
    Animals--and mice in particular--are invaluable models for studying 
human diseases, including those caused by genetic abnormalities. Mutant 
mice have contributed to an understanding of sickle cell anemia, cystic 
fibrosis, and diseases involving amino acid metabolism, to name a few. 
But mutant mice are difficult and expensive to develop and maintain by 
individual investigators. To improve access to these essential 
resources, NCRR plans to create an integrated network of several Mutant 
Mouse Regional Resources, abbreviated MMRR. These MMRRs will share a 
common database and be coordinated and linked electronically. Because 
of their regional nature, these resources will be responsive to 
individual investigator needs, and because of their interrelatedness, 
they will operate efficiently and cost effectively.
    It may sound like a utopian dream, but many scientists believe that 
it one day may be possible to grow replacement organs in tissue culture 
from cells that have been specifically programmed. Already, skin is 
routinely grown in large sheets and used to replace skin destroyed by 
burns or other types of injury. But before complex tissues from the 
brain, heart, or liver can be reliably reproduced, years of research 
lie ahead. Studies on pluripotent cells, known as stem cells, can 
provide important information on how the different organ systems in the 
body develop and how this development can be controlled and put to good 
use. Unfortunately, stem cells still are difficult to isolate and 
culture. To help researchers obtain these critical cells, NCRR plans to 
support the establishment of a repository and distribution center for 
nonhuman stem cells and to support research grants to characterize stem 
cells in nonhuman species. Such stem cell studies may eventually lead 
to effective treatments for Alzheimer's and Parkinson's disease and to 
production of replacement heart valves and functional liver tissue.
         bioengineering, computers and advanced instrumentation
    Ongoing efforts to decode the complete human genome, determine the 
functions of proteins, and grow specific replacement tissues in 
culture, lead unavoidably to the Question. How does it all hang 
together? How do genes produce proteins at exactly the right moments 
and right amounts? How are different types of cells made and 
controlled? Scientists in this country and abroad are hard at work to 
unravel these complex interrelationships. This comprehensive research 
discipline, known as Integrated Genomics, requires extensive 
development of new multidisciplinary technologies that can characterize 
proteins in single cells, and requires expertise in such areas as 
nanofabrication, bioengineering, laser application, optics, molecular 
biology, and high-end computing and separation scienceagain 
underscoring the multidisciplinary nature of health-related research. 
NCRR intends to support these far-reaching efforts, which will have 
enormous influence on current biomedical thinking and will likely lead 
to more efficient treatment of inherited and even acquired disorders.
    The detailed functions of individual proteins cannot be understood 
completely until their three-dimensional structures are known. The 
brilliant x-rays generated in synchrotrons and used in x-ray 
crystallography studies allow scientists to determine three-dimensional 
structures of molecules with unprecedented resolution. But recent 
successes in sequencing genes from the human, mouse, zebrafish and 
other genomes have generated many proteins of unknown function which 
has led to an increasing demand for structural biology studies that 
threaten to overwhelm the synchrotron facilities. To help alleviate 
major access problems at the NCRR-supported synchrotron resources for 
biomedical research, NCRR plans to provide funding for increased 
staffing and new detectors that will improve data collection 
efficiency. NCRR also intends to solicit research project grant 
applications that emphasize new experimental and computational 
approaches to solving crystallographic phasing problems. Knowing the 
three-dimensional structure of proteins will help scientists design 
targeted drugs and develop more efficient treatment of diseases.
    Cell surface molecules known as major histocompatibility complex 
antigens (MHC) play decisive roles when the body's immune system 
accepts or rejects foreign biological materials such as transplanted 
organs or infectious agents such as HIV, the virus that causes AIDS. In 
the numerous attempts to prepare a vaccine against HIV, scientists 
often evaluate their experimental vaccines in rhesus monkeys infected 
with the monkey counterpart of HIV called SIV--simian immunodeficiency 
virus--which causes AIDS in nonhuman primates. Recently, investigators 
found a subset of rhesus macaques with an MHC class I molecule that 
stimulates an immune response to SIV. To be more effectively used in 
AIDS-related research, rhesus macaques must be screened for this type 
of MHC class I molecules. To facilitate this screening process, NCRR 
will establish molecular typing laboratories for analysis of MHC class 
alleles to identify rhesus monkeys for these traits. This research will 
help facilitate AIDS vaccine development.
                           research capacity
    In all scientific studies it is important to have properly trained 
investigators, particularly in clinical research. Clinical research is 
essential for developing new therapies and drugs and finding preventive 
measures or cures for diseases, but it is difficult to recruit enough 
well-trained physicians into research careers. NCRR's Clinical 
Associate Physician (CAP) program--funded through competitive 
supplements to General Clinical Research Center grants--provides up to 
five years of early career support to physicians and dentists who plan 
to become independent clinical investigators. NCRR plans to expand the 
CAP program to help assure that there are well trained physician 
investigators to provide a bridge between patient-oriented and basic 
research.
    NCRR also plans to enhance training and career support of well 
trained investigators in the field of comparative medicine by 
establishing two types of programs: A two-year fellowship for research 
veterinarians at the beginning of their careers and a mid-career 
investigator award for experienced pathobiologists. Pathobiologists are 
essential for working with other scientists who generate genetically-
altered mice and other animal models that frequently have associated 
developmental defects that can be identified by the pathobiologists.
    The activities of the NCRR are covered within the NIH-wide Annual 
Performance Plan required under the Government Performance and Results 
Act (GPRA). The fiscal year 2000 performance goals and measures for NIH 
are detailed in this performance plan and are linked to both the budget 
and the HHS GPRA Strategic Plan which was transmitted to Congress on 
September 30, 1997. NIH's performance targets in the Plan are partially 
a function of resource levels requested in the President's Budget and 
could change based upon final Congressional Appropriations action. NIH 
looks forward to Congress' feedback on the usefulness of its 
Performance Plan, as well as to working with Congress on achieving the 
NIH goals laid out in this Plan.
                                 ______
                                 
              Prepared Statement of Dr. William R. Harlan
    Mr. Chairman and Members of the Committee: I am honored to appear 
before you as the Acting Director of the National Center for 
Complementary and Alternative Medicine (NCCAM), the newest Center at 
the National Institutes of Health, to present the fiscal year 2000 
President's budget request of $50.2 million, an increase of $1.2 
million (2.4 percent) over the comparable fiscal year 1999 
appropriation. Funds for NCCAM's efforts in AIDS research are included 
within the Office of AIDS Research budget request.
    The Secretary for Health and Human Services approved the Center on 
February 1, 1999, as called for in section 301 and title IV of the 
Public Health Service Act. Considerable work remains to be done as the 
Center transitions from an office to a Center, and assumes grant review 
and funding and financial management. The development of a 
comprehensive research portfolio began with the Office of Alternative 
Medicine and will be expanded together with an increase in research 
training and information dissemination.
   application of scientific study to complementary and alternative 
                             medicine (cam)
    The National Center for Complementary and Alternative Medicine 
(NCCAM) is dedicated to evaluating complementary and alternative 
approaches and to providing information about these practices to the 
public and to health care providers. CAM is defined as medical and 
health care practices that are not an integral part of conventional 
(Western) medicine. The public has a growing interest in and increasing 
use of complementary and alternative medicine. More than 40 percent of 
the public reported the use of such therapies in 1997 according to a 
survey by Eisenberg. There are important implications for the health of 
the public with the widespread use of largely unregulated therapies 
about which there may be inadequate information. The need for 
scientifically valid information about therapies is heightened also by 
the potential for benefit as well as for risk. These benefits and risks 
can result from use of the preparations and procedures alone or as a 
complement to conventional therapies. However, evidence for the balance 
of benefit and risk is not available for most CAM approaches. At a time 
when medicine and public health are using evidence-based approaches to 
evaluate conventional therapies, the same standards should be applied 
to complementary and alternative medicine. There is a growing interest 
by conventional practitioners and medical scientists in CAM and this is 
affirmed by a recent series of dedicated articles in the American 
Medical Association journals. The development of a National Center for 
Complementary and Alternative Medicine will provide an expansion of 
research and information dissemination.
    The process of evaluation involves research at many steps from 
basic investigations through small observational studies to large 
clinical trials designed to provide a definitive assessment of a 
therapy. The attached schema sketches these approaches and the research 
mechanisms to support them.
                         large clinical trials
    The Office of Alternative Medicine has initiated several large 
clinical trials to test CAM approaches that are widely used but lack 
evidence to support their value. In collaboration with the NIMH, St. 
John's Wort or hypericum is being tested in a randomized controlled 
trial as a treatment for depression. This is the most commonly used 
antidepressant in Germany and one of the 5 most commonly used 
botanicals in the United States. NCCAM is supporting a trial of 
glucosamine and chrondroitin sulfate each alone or in combination to 
determine their effects on osteoarthritis of the knees. Osteoarthritis 
is increasing dramatically as our population ages and is responsible 
for impaired quality of life and loss of mobility. The materials being 
studied, glucosamine and chrondroitin sulfate are derived from animal 
cartilage and among the most commonly used CAM products, in part 
because of two books touting their benefits. Another clinical trial is 
testing acupuncture in the management of osteoarthritis. Yet another 
large clinical trial is being developed to test whether Ginkgo Biloba 
can delay the onset of dementia in older persons, for whom it 
represents a debilitating and expensive condition. This popular herbal 
has shown modest effects in ameliorating the effects of existing 
Alzheimer's dementia. The public health implications are very important 
in terms of quality of life, dependency and health care costs if even a 
modest delay of onset is possible. NCCAM is also supporting well-
designed clinical trials of cancer therapies. Both shark cartilage and 
a rigid dietary/dietary supplement approach have found considerable 
support and use in the non-medical and medical communities but the 
scientific evidence is sparse. Two large trials are being supported by 
NCCAM and are being conducted by the National Cancer Institute (NCI). 
The collaboration with the NCI affords an efficient means of utilizing 
the resources and expertise of the Cancer Therapy and Evaluation 
Program. Importantly, this collaboration between NCI and NCCAM is being 
expanded with the development of a Cancer Advisory Panel for 
Complementary and Alternative Medicine. This panel will evaluate and 
recommend future studies and diminish the misunderstanding and 
controversy surrounding CAM therapy in cancer. Will all of these trials 
confirm the value of the CAM procedures under study? Probably not. But 
the trials should indicate which therapies have value, which do not, 
and what are the safety and adherence issues.
                          cam research centers
    The research embodied in these large clinical trials has an 
extensive background of investigation that extends from study of 
anecdotal clinical experiences and animal studies to small exploratory 
studies and on to small-scale trials. A Center program was initiated by 
the Office of Alternative Medicine 5 years ago with the goal of 
developing a core of resources, researchers and collaborators that 
would investigate promising clinical observations and develop pilot 
studies aimed at building a base for larger and more definitive 
clinical trials. The Centers program is being expanded under the 
National Center for Complementary and Alternative Medicine to include 
new areas of interest and to increase support for individual research 
projects that will move the research toward evidence-based statements 
of CAM practice. The Centers have brought together researchers from the 
CAM community and experienced scientists with strong methodological 
skills. The CAM Research Centers focus on: cancer, cardiovascular 
disease, HIV/AIDS, pediatrics, musculoskeletal disorders (with emphases 
on rheumatoid diseases and osteoarthorits), neurological disorders and 
stroke, substance abuse, and problems associated with aging. The robust 
response to the recent requests for Center applications has provided an 
opportunity to select the most meritorious from among a wealth of very 
good proposals. These Centers also afford outstanding opportunities for 
research training.
                        grant supported research
    The National Center for Complementary and Alternative Medicine will 
review and fund investigator-initiated research grants using the usual 
NIH peer-review system. As an office these grants were reviewed and 
funded through Institutes and Centers although the initiation of 
requests were developed jointly by the Office and a sponsoring 
Institute or Center (IC). These investigator-initiated studies include 
basic investigations of mechanisms, field investigations of reported 
therapeutic successes, and exploratory studies and small trials. The 
NCCAM will continue to benefit from the interest and active 
participation of staff from other IC's at NIH and from collaboration 
with other agencies. The important scientific assistance provided by 
other IC's will continue by having a designated liaison scientist for 
each Institute and Center. These scientific liaisons will attend 
scheduled meetings that will also include liaisons from other health 
agencies. These interagency coordinating meetings began in 1997 and 
have fostered inter-agency agreements with AHCPR and CDC. The evidence-
based practice centers program of AHCPR will be tasked to develop 
evidence-based reviews of selected CAM practices as designated by 
NCCAM. CDC has an agreement to conduct field investigations of practice 
experiences with CAM and to report on their findings. In both 
instances, the unique resources of these agencies are being used to 
complement studies supported by NIH and this information provides 
direction for future studies.
                           research training
    Research training has a critical role in advancing research in CAM. 
Both the conventional and CAM communities have expressed an interest in 
conducting CAM research. Both groups need training in design and 
conduct of clinical research and in addressing the unique issues 
presented in studying CAM modalities. The Centers program has 
facilitated training by bringing together a critical mass of CAM 
investigators and projects that became the focus of research training. 
The current recompetition of the CAM Research Centers contains 10 
percent of direct costs for allocation to training and career 
development at each Center. Training and fellowship awards have been 
made to trainees working in these Centers and as supplements to other 
grants. NCCAM is participating in the mentored clinical research awards 
that provide support for those who have finished clinical training and 
want support to transition to a research career. The intramural 
research training program began in fiscal year 1998 and currently four 
fellows are being supported. These fellows take the core course on 
clinical research and are working in intramural laboratories on CAM 
topics. Their projects merge conventional research methodologies with 
issues in CAM.
                       information dissemination
    Providing current and reliable information to the public and to 
healthcare providers is important to assist in decisions about the use 
of CAM approaches and about research opportunities. NCCAM has several 
publicly available information sources. A Public Clearinghouse provides 
information for those who call a toll-free number (1-888-644-6226). 
Operators can respond to inquires in English or Spanish. They provide 
information that has been reviewed for its accuracy. About 1500 
inquires are handled each month and the number continues to grow. 
Information is available on the web site at http://altmed.od.nih.gov 
and consists of current activities in NCCAM and information on CAM 
approaches. An on-line bibliographic database dedicated to CAM is 
accessible at this address. There are over 140,000 citations available 
and we expect to add about 25,000 additional citations this year. This 
is a useful resource for health providers and researchers as well as 
the public. There have been about 54,375 searches conducted thus far 
and all but 1500 have been from outside of NIH. NCCAM has been accepted 
into the Combined Health Information Data (CHID) system that aggregates 
health information for the public on numerous topical areas related to 
health and disease. Information on CAM therapies is available along 
with information on conventional therapies. Informational materials on 
CAM cancer therapies are being revised cooperatively with the National 
Cancer Institute (NCI) and will be available at the web sites of both 
NCI and NCCAM.
             government performance and results act (gpra)
    The activities of the NCCAM are covered within the NIH-wide Annual 
Performance Plan required under the Government Performance and Results 
Act (GPRA). The fiscal year 2000 performance goals and measures for NIH 
are detailed in this performance plan and are linked to both the budget 
and the HHS GPRA Strategic Plan which was transmitted to Congress on 
September 30, 1997. NIH's performance targets in the Plan are partially 
a function of resource levels requested in the President's Budget and 
could change based upon final Congressional Appropriations action. NIH 
looks forward to Congressional feedback on the usefulness of its 
Performance Plan, as well as to working with Congress on achieving the 
NIH goals laid out in this Plan.
                                 ______
                                 
                Prepared Statement of Dr. Gerald Keusch
    Mr. Chairman and members of the Committee. I am pleased to present 
the President's non-AIDS budget request for the Fogarty International 
Center (FIC) for fiscal year 2000, a sum of $23.5 million, which 
reflects an increase of $553 thousand (2.4 percent) over the comparable 
fiscal year 1999 appropriation. Including the estimated allocation for 
AIDS, total support requested for FIC is $36.2 million, an increase of 
$.8 million over the fiscal year 1999 appropriation. Funds for the FIC 
efforts in AIDS research are included within the Office of AIDS 
Research budget request.
    The programs of the FIC, developed in consultation with the 
Committee, reflect the strength of our commitment to protect the health 
of Americans and reverse the deepening disparities in global health 
status. As the late physician-philosopher Lewis Thomas noted in an 
essay on global health: ``We have an obligation to assure something 
more like fairness and equity in human health. The idea that all men 
and women are brothers and sisters is not a transient cultural notion. 
. . . It is a biological imperative.''
    This is my first appearance before you as FIC Director and NIH 
Associate Director for International Research. Before describing our 
progress over the past year and proposed new directions, I would like 
to note my gratitude for the support NIH has provided to me and my 
colleagues for international work. My own studies on global urgencies 
such as malnutrition and diarrheal disease have demonstrated to me the 
profound repercussions of a nation's health on societal and economic 
well-being, and the importance of bringing together diverse scientific 
disciplines to confront major health concerns. I hope to foster new 
partnerships among institutions involved in global health, including 
development agencies and industry, to ensure that our research efforts 
translate into public health tools and interventions for the benefit of 
all people.
    I also will emphasize the importance of applying molecular and cell 
biology to clinical studies and epidemiological field work. The promise 
of ``molecular medicine''--our capacity to identify, amplify, clone and 
utilize genes for clinical benefit--carries great implications for the 
development of vaccines, diagnostics and drugs for diseases which 
threaten populations at home and abroad. I look forward to working with 
the Committee to set aggressive but achievable target objectives for 
FIC as part of an overall NIH research campaign to reduce global health 
disparities and to create a new ``molecular global public health'' 
agenda.
    Over the past year, FIC celebrated its thirtieth year as the NIH 
component dedicated to promoting research and training in global 
health. These three decades have witnessed significant breakthroughs 
fostered by international collaborative research, such as the discovery 
of genes responsible for cystic fibrosis and Huntington's disease; but 
equally important, a realization that the health and well-being of our 
population cannot be separated from the welfare of populations 
elsewhere in the world. One million people travel between the 
developing world and the U.S. or other industrialized countries every 
week. Despite all the advantages of an interconnected world, trade and 
travel are inevitably associated with the transfer of health risks: 
infectious diseases, contaminated foodstuffs, toxic substances, 
antibiotic resistant microbes, to name a few.
    Tuberculosis, HIV/AIDS, influenza, and dengue fever recognize no 
geographic boundaries nor political allegiances, and what happens on 
the far reaches of the globe can have troubling repercussions in U.S. 
hospitals. For example, unregulated, widespread use and misuse of anti-
microbial drugs in the developed and developing countries has led to 
the emergence and global spread of drug-resistant pathogens such as 
Streptococcus pneumoniae, which is a common cause of life-threatening 
bacterial pneumonia and is responsible for most episodes of otitis 
media, the most common cause of pediatric physician visits in the 
United States. FIC research and training activities range from 
partnering with the world's foremost scientists to better understand 
and ultimately prevent diseases such as cancer, malaria, or HIV; to 
developing methods for rapid identification of emerging, reemerging and 
pandemic infections; to developing and testing drugs and vaccines. FIC 
also supports studies of unique environmental exposures such as those 
in Chernobyl, where researchers are improving our understanding of 
radiation and childhood cancer. American leadership in international 
biomedical research is needed to protect U.S. citizens from disease, 
strengthen our economy, advance U.S. interests abroad and fulfill our 
humanitarian aspirations. Our battle to prevent and cure HIV/AIDS is a 
dramatic example of the convergence of these purposes. AIDS has exacted 
a profound humanitarian toll; reversed gains in child survival in many 
African nations; and reduced the economic stability of emerging markets 
due to its mortality toll on the productive workforce. This situation 
has an adverse effect on international trade and, potentially, 
political stability. Major leaps in our understanding of the biology, 
epidemiology, clinical manifestations and progression of HIV infection 
have come from international research. An exciting example involves FIC 
AIDS International Training and Research Program-sponsored longitudinal 
studies of volunteers in Kenya who have not become infected with HIV 
despite multiple exposures. This research, carried out in cooperation 
with the Universities of Washington and Nairobi and the National 
Institute of Allergy and Infectious Diseases (NIAID), helps us 
understand how some people resist HIV infection and may pave the way 
for the development of new drugs to inhibit the virus from penetrating 
and multiplying within target cells.
                  program progress and accomplishments
    With increases provided by Congress this fiscal year, FIC is 
supporting U.S. institutions in launching new or expanded international 
research and training efforts in HIV/AIDS, as well as environmental 
health, maternal and child health, and cancer etiology and risk. We are 
expanding our international program in medical informatics to enable 
scientists in Africa and Latin America to access the scientific 
resources of NIH through the Internet and to assist U.S. scientists to 
develop global scientific partnerships. Since the FIC last presented to 
this Committee, FIC-sponsored investigations conducted by scientists at 
Case Western Reserve University and the Ugandan Ministry of Health have 
identified drug regimens that prevent active tuberculosis among HIV-
infected adults, findings that are applicable to the Global Programme 
on Tuberculosis of the World Health Organization. FIC also is examining 
the role of multivitamin supplements as a prophylactic and therapeutic 
measure for individuals infected with HIV through joint studies 
conducted by Muhimbili University College of the Health Sciences in 
Dar-es-Salaam and Harvard University. Expanded prevention research may 
lead to low-cost, health-promoting therapies for those who cannot 
afford expensive anti-retroviral drugs. Other FIC-supported research 
involves international monitoring of the genetic variability of the 
different strains of HIV, providing the epidemiological data required 
for the production of candidate vaccines.
    Chemicals, radiation, microbial contaminants and other 
environmental agents cause a host of acute and chronic illnesses as 
well as birth defects. These effects often are documented first among 
highly exposed populations in other countries. Additional support to 
the FIC International Training and Research Program in Environmental 
and Occupational Health is promoting long-term, cross-cultural studies 
to examine the effects of environmental agents on health. In the Czech 
Republic, for example, investigators are assessing the long-term 
effects of pesticides and lead exposures on the nervous system. In 
Colombia, a study of exposure to benzene and other aromatic 
hydrocarbons may improve our understanding of their relation to 
neurobehavioral disorders. These and other projects may assist nations 
and international organizations in developing evidence-based safety 
standards for the environment and workplace.
    International studies also provide opportunities to elucidate the 
etiology of diseases with diverse and sometimes interactive 
environmental and genetic causes, such as breast cancer. The incidence 
of breast cancer is increasing worldwide with the highest rates 
occurring in industrialized countries. As developing nations make the 
transition to industrialized economies, breast cancer incidence rates 
begin to rise dramatically. This suggests that changes in the 
prevalence of environmental or behavioral risk factors may be important 
contributors to the disease. Supported by a Fogarty International 
Research Collaboration Award, scientists at the University of 
Washington who identified the breast cancer gene (BRCA1) earlier this 
decade are now assessing the role of environmental and genetic factors 
in breast cancer among patients in Hungary and Chile. The study 
examines such potential influences as hormone therapy, diet and 
smoking. The ultimate aim is to identify risk factors which may be 
modified to reduce risk in our own population as well as the 
populations under study.
    One of the more menacing outcomes of environmental change and 
demographic pressure, with irreversible and unpredictable consequences, 
is the loss of biological diversity. A key implication is the loss of 
potential new medicines derived from biological resources such as 
plants, invertebrates and marine organisms. The FIC International 
Cooperative Biodiversity Groups, an international consortium of 
academic institutions, foundations and pharmaceutical companies, has 
identified over two dozen potential therapeutics from natural products, 
including a compound that shows strong activity against tuberculosis. 
The biodiversity initiative is co-sponsored by the National Science 
Foundation and several of our sister institutes at NIH. Thanks to your 
support, this, and more, is already happening. Now, let us look 
forward.
                  new initiatives for fiscal year 2000
    In fiscal year 2000, FIC proposes to launch several 
interdisciplinary initiatives in concert with other agencies and NIH 
institutes. As an outgrowth of the biodiversity program and in 
cooperation with NSF and NIAID, FIC is conceiving a program to assess 
habitat-level changes in biodiversity which may have consequences for 
disease agents, domestic and wild animal reservoirs, and insect 
vectors. Lyme disease, cholera and hantavirus are notable examples. 
There also are important and novel scientific leads to be pursued with 
other diseases. Studies from China, for example, suggest that selenium 
deficiency in soil alters the viral genotype and increases the 
virulence of the coxsackie virus, resulting in a life-threatening heart 
condition known as Keshan's disease. This is the first report of a 
nutritional deficiency altering viral genes and may have implications 
for our understanding of microbial ecology and virulence.
    Because research and research ethics go hand-in-hand, FIC proposes 
to develop novel training programs designed to increase the number of 
investigators in developing nations with expertise in applied research 
ethics. Through fellowships and international workshops, in 
consultation with WHO, UNAIDS and others, FIC's bioethics training 
program will focus on the responsibilities of institutional review 
boards, such as risk-benefit analysis, levels of care for control 
groups, informed consent, and emerging issues such as collection and 
use of DNA samples. Our objectives are twofold: scientists from 
developing nations will gain deeper insights into U.S. procedures for 
ethics review, and NIH participants will improve their understanding of 
local considerations in interpreting and implementing ethical precepts 
in internationally-based research.
    An initiative to be planned in cooperation with the World Bank will 
examine the economic implications of health investments. Just as wealth 
may lead to improved health, the converse also may be true: several 
lines of evidence suggest that health may be a precondition for 
economic enrichment of a society at the population level and for its 
lowest income groups at the household level. For example, economists 
have identified a correlation between reductions in malaria prevalence 
and increases in economic productivity, as measured by various 
macroeconomic indices. Support will be provided to interdisciplinary 
teams of economists and health scientists from the U.S. and developing 
nations. The practical intent of this initiative will be to provide 
empirical data to assist development banks, bilateral and multilateral 
donors and finance ministries to determine priorities for health 
research and development investments.
                           concluding remarks
    Mr. Chairman, the premise of our programs is that research, and 
building research capabilities, are prerequisites to reversing our 
internal and global disparities in health, just as good health is 
instrumental to economic development and productivity. Research is 
required to guide strategic policies against global health threats. 
Without it our actions can be inefficient, or even worse, wholly 
ineffective. The example par excellance in our century is the 
eradication of smallpox. The original global prevention strategy was 
mass vaccination, yet transmission persisted. Scientists conducted 
rigorous investigations on patterns of illness and developed a 
targeted, cost-effective strategy of cluster vaccination around active 
cases. Through international cooperation, the disease was eliminated 
within ten years, and at a fraction of the cost of mass vaccination. 
With the continuing support of Congress, we will work with our domestic 
and international partners towards the ultimate aim of replicating this 
success against global threats that exact such a huge humanitarian toll 
and social cost. The FIC particularly looks forward to working closely 
with the World Health Organization under its new Director-General, Dr. 
Gro Harlem Brundtland, on both infectious and chronic disease 
priorities.
    The activities of the FIC are covered within the NIH-wide Annual 
Performance Plan required under the Government Performance and Results 
Act (GPRA). The fiscal year 2000 performance goals and measures for NIH 
are detailed in this performance plan and are linked to both the budget 
and the HHS GPRA Strategic Plan which was transmitted to Congress on 
September 30, 1997. NIH's performance targets in the Plan are partially 
a function of resource levels requested in the President's Budget and 
could change based upon final Congressional Appropriations action. NIH 
looks forward to Congress' feedback on the usefulness of its 
Performance Plan, as well as to working with Congress on achieving the 
NIH goals laid out in this Plan.
                                 ______
                                 
              Prepared Statement of Donald Lindberg, M.D.
    I am pleased to present the President's budget request for the 
National Library of Medicine (NLM) for fiscal year 2000. The fiscal 
year 2000 budget provides that NLM receive $181.4 million, an increase 
of $4.2 million (2.4 percent) over the comparable 1999 figure. 
Including the estimated allocation for AIDS, total support proposed for 
the NLM is $185.7 million, an increase of $4.3 million over the 1999 
appropriation. Funds for NLM's AIDS efforts are included within the NIH 
Office of AIDS Research request.
                    health information for consumers
    Today's American is a more savvy ``consumer'' of health care than 
the patient of just a few decades ago. Society is awash in health 
information, and knowledgeable consumers can quickly find advice. The 
news media carry frequent stories about health and medicine; it seems 
as if the New England Journal of Medicine and the Journal of the 
American Medical Association are cited as sources for stories as often 
as the Associated Press. Not all health information available to the 
public is so well grounded. Some of the information ``out there'' is of 
suspect quality, and not everyone has access to the Internet (where 
much of the data resides). The National Library of Medicine sees in 
this situation a need and has launched an initiative to address both 
these problems.
    When the NLM discovered that one third of the 140 million MEDLINE 
searches being done each year are being done by the public, for their 
personal health and the health of their families, the Library 
immediately began planning a new program to reach out directly to 
consumers. MEDLINEplus was created as part of this effort and 
introduced on October 22, 1998. It provides Web users with access to 
reviewed, authoritative health information--from the NLM, the National 
Institutes of Health, other government agencies, and from selected non-
government organizations. The new service provides access to extensive 
information to 45 diseases and conditions (cancer, diabetes, etc.) and 
also has links to self-help groups, NIH consumer health information, 
clearinghouses, dictionaries, lists of hospitals and physicians, health 
information in Spanish, and clinical trials. The number of health 
topics is being expanded as rapidly as possible; NLM projects the 45 
topics to be increased to several hundred in the coming months. One 
unique feature of MEDLINEplus is a series of preformulated MEDLINE 
searches on various aspects of diseases that return up-to-date material 
useful to the general public. MEDLINEplus is the centerpiece of a new 
pilot project that is helping to address the second problem identified 
above: the lack of Internet access by many of the public. The plan 
devised by the NLM is to train local public librarians to use the 
Internet to find health information responsive to their patrons' needs. 
In the pilot project, begun at the same time MEDLINEplus was 
introduced, NLM is working with 37 representative public library 
systems (more than 200 libraries in all).
    A new project with enormous potential for the public is the effort 
to create an easy-to-use database containing information about clinical 
trials, whether federally or privately funded, for experimental 
treatments for serious diseases and conditions. The database is being 
developed in stages, with NIH-sponsored trials as the first module. It 
will allow nonscientific users to understand the purpose of a clinical 
trial, the eligibility criteria for participating, where it is being 
conducted, and how to get in touch with those conducting it. The 
Library plans to create a central search engine that will provide a 
uniform interface to all clinical trials and thus simplify the task of 
finding information. One route of access to the clinical trials 
database would be via MEDLINEplus.
                        special target audiences
    Recognizing that poor neighborhoods suffer disproportionately from 
toxic waste sites and other environmental hazards, the NLM has a 
program to train health professionals, community leaders, and others in 
these areas to use TOXNET, NLM's set of databases with information 
about toxicology, environmental health, and hazardous wastes. Working 
through Historically Black Colleges and Universities (HCBUs), the 
Library provides state-of-the-art equipment, software, and free online 
access to computerized information sources for more than 60 
institutions. As a result, online searching has been integrated into 
curricula, and training classes are held at the HBCUs for researchers, 
instructors, students, and health professionals in neighboring 
communities. The success of this program is encouraging us to expand 
the network to community centers, churches, state health organizations, 
and other groups that communicate directly with concerned citizens.
    Another outreach initiative targeting a special audience is the 
``Partners in Information'' program in which NLM has made awards to 
public health officials to help them hook up to the Internet and make 
it easier to access health information. Public health officials at the 
state and local level, as a group, have inadequate access to 
information services and technology. The new program allows them to get 
training and have access to information and advanced telecommunications 
so that they will be better equipped to deal with public health 
challenges. The program is a joint activity of the NLM and several 
federal and nonfederal groups, including the Centers for Disease 
Control and Prevention. The awards are scattered around the U.S. in 
rural and underserved areas and involve information services for public 
health officials who are addressing a variety of community health 
problems and special populations.
    NLM's outreach activities have an international component that is 
also receiving special attention. The Library has always emphasized 
collecting and organizing the medical publications of other countries; 
this is reflected in the international character and usage patterns of 
MEDLINE and the other databases. A Long Range Planning Panel on 
International Programs was set up by the NLM Board of Regents and, in 
its final report, issued in 1998, the Panel recommended that the 
Library expand its involvement with other governments and with non-U.S. 
health science institutions. One international program, undertaken at 
the request of the NIH Director, is to participate in the Multilateral 
Initiative on Malaria by enhancing the communications and networking 
capabilities of African malarial researchers.
                          medical informatics
    The NLM is supporting cutting-edge research that seeks to learn how 
the capabilities of the Next Generation Internet (NGI) can be used to 
improve health care, health education, and medical research. One aspect 
of this support is to fund pertinent studies by the National Academy of 
Sciences (most recently ``Enhancing the Internet for Medical 
Applications: Technical Requirements and Implementation Strategies''). 
The NLM itself depends to a great extent on the Internet to deliver 
health information services, and it thus has a vested interest in 
promoting the health of the network. The NGI initiative is a 
partnership among industry, academia, and government agencies that 
seeks to provide affordable, secure information delivery at rates 
thousands of times faster than today. If we can transmit massive 
amounts of data quickly, and with accuracy and security, will this 
lower health costs, increase the quality of care, and safeguard patient 
privacy?
    The NLM is supporting a number of investigations aimed at finding 
answers to these questions. Some are ``tele-'' projects: telemedicine, 
telepresence, teleconferencing, tele-immersion, telemammography, 
teleradiology, and teletrauma. Others are aimed at speeding life-saving 
treatment to heart attack victims. Working with the National Heart, 
Lung, and Blood Institute, the Library is trying to find out if the 
techniques of medical informatics can help ensure that known clot-
dissolving agents are applied immediately after a heart attack. If 
successful, NLM's program would be a dramatic example of how timely 
information can potentially save many thousands of lives.
    Several of NLM's technology-based programs have an educational 
focus. One new one is ``Profiles in Science,'' a web site that allows 
the user to look behind the scenes of scientific discoveries at the 
unpublished writings, letters, photographs, and lab notes of great 
scientists and great scientific discoveries. The first two collections 
are for Oswald Theodore Avery and Nobelist Joshua Lederberg. The new 
web site, which brings together the best in archival practices with 
state-of-the-art technology, will be continually enriched with the 
papers of great scientists of this century. Another program with 
important implications for education and training is the Visible Human 
Project, which continues to command great interest in the scientific 
community and public media. The two datasets, which contain detailed, 
submillimeter, anatomical images of a male and female, are being used 
(without charge) by more than 1,000 licensees in 30 countries. Some of 
the educational uses to which they are being put are ``surgical 
simulators'' that let doctors rehearse delicate medical procedures on 
computer and ``recyclable cadavers'' to help medical students learn 
about anatomy via computer. The NLM is cooperating with three other NIH 
Institutes to fund jointly the development of an interactive, Internet-
accessible atlas of head and neck anatomy based on the Visible Human 
Project data sets.
                          genetics of medicine
    Eleven years ago the Congress, anticipating the virtual explosion 
of genomic information and the growing importance of molecular biology, 
created the National Center for Biotechnology Information (NCBI) as 
part of the NLM. By creating and maintaining immense databanks to 
receive and organize this information, and the sophisticated tools that 
allow it to be used in making further discoveries, the NCBI is making a 
major contribution to the Human Genome Project. Scientists in 
universities, research institutions, government agencies, and 
commercial organizations worldwide have come to depend on the NCBI as 
the authoritative source of molecular data and data-manipulation tools, 
and they submit the results of their work to the Center's highly 
evolved information resources so that the data will be available for 
use by others. One result of the accelerating pace of research is that 
the GenBank database of DNA sequence information is growing to 
gargantuan proportions. It now contains some 3 million sequences with a 
total of 2 billion base pairs, and the NCBI web site, where GenBank is 
made freely available, receives some 4.5 million ``hits'' per day from 
100,000 scientists and others around the world. Not only do they use 
GenBank, but they avail themselves of sophisticated computational 
tools, such as the BLAST suite of programs for conducting comparative 
sequence analysis. Another such tool is Entrez, which links 
information, including the literature, sequences, structures, and 
taxonomy.
    NCBI scientists are working closely with colleagues in other 
Institutes to create new capabilities in our fight against disease. One 
example we mentioned last year is the National Cancer Institute's 
Cancer Genome Anatomy Project (CGAP). This research is an effort to 
characterize normal, pre-cancerous, and malignant cells at the 
molecular level, and may lead to new therapies and diagnostic tools. 
NCBI scientists, working on the communication aspects of the project, 
are making it available on the web. Another collaborative project is 
with the National Institute of Allergy and Infectious Diseases to 
develop a web resource of genetic data related to the parasite 
responsible for most cases of malaria. NCBI scientists have also 
collaborated with colleagues in laboratories around the world to 
produce a new ``gene map'' that pinpoints the chromosomal locations of 
almost half of all genes. This milestone in the Human Genome Project, 
available to all on the World Wide Web, will greatly expedite the 
discovery of human disease genes and, by extension, contribute to 
advances in detection and treatment of common illnesses.
            the medical literature: bedrock of nlm services
    The advanced information products and services of the National 
Library of Medicine are built on the foundation stone of its 
unparalleled collections. They are broad (encompassing all the health 
sciences) and deep (from the 11th century to the present). The Library 
subscribes to more than 22,000 serial publications and serves as a 
``court of last resort'' for published biomedical information in all 
forms. Extensive use is made of this collection: NLM responded to 
almost 700,000 requests for copies of articles and books in 1998, by e-
mail, fax, post, and on-site patrons. The Library was able to handle 
this record workload with the help of a new document delivery system 
that uses scanning and electronic communications technology to process 
requests much faster, with less effort and paperwork, and with a higher 
quality copy being delivered to the requester. Clinical emergencies 
have special priority; doctors a thousand miles away have been 
astounded to receive a copy of an article from the NLM within a half 
hour. Much of the Library's progress, including this new system, has 
been achieved under the ``System Reinvention'' banner. Other examples 
are the access programs that make MEDLINE freely available on the World 
Wide Web and a new ``integrated library system'' that greatly improves 
internal processes and provides the same easy web access to book and 
audiovisual materials that MEDLINE users presently enjoy for the 
journal literature.
    One of the most important factors in the widespread acceptance and 
use of NLM's information services is the role played by the National 
Network of Libraries of Medicine. The NN/LM, with its 4500 members, is 
organized through eight regions, each with a Regional Medical Library 
designated and supported by the NLM. Those institutions, together with 
140 large academic health science libraries and the many hospital and 
other libraries in the network, provide crucial information services to 
scientists, health professionals, and, increasingly, the public. The 
public library initiative, described above, would not be possible 
without the help of network libraries.
    The activities of the NLM are covered within the NIH-wide Annual 
Performance Plan required under the Government Performance and Results 
Act (GPRA). The fiscal year 2000 performance goals and measures for NIH 
are detailed in this performance plan and are linked to both the budget 
and the HHS GPRA Strategic Plan which was transmitted to Congress on 
September 30, 1997. NIH's performance targets in the Plan are partially 
a function of resource levels requested in the President's Budget and 
could change based upon final Congressional Appropriations action. NIH 
looks forward to Congress's feedback on the usefulness of its 
Performance Plan, as well as to working with Congress on achieving the 
NIH goals laid out in this Plan.
                                 ______
                                 
                Prepared Statement of Dr. Neal Nathanson
    I am pleased to present the President's budget request for the AIDS 
research programs of the National Institutes of Health for fiscal year 
2000, a sum of $1,833.8 million, an increase of 2.0 percent above the 
comparable fiscal year 1999 appropriation. The activities of the OAR 
are covered within the NIH-wide Annual Performance Plan required under 
the Government Performance and Results Act (GPRA). The fiscal year 2000 
performance goals and measures for NIH are detailed in this performance 
plan and linked to both the budget and the HHS GPRA Strategic Plan that 
was transmitted to Congress on September 30, 1997. NIH's performance 
targets in the Plan are partially a function of resource levels 
requested in the President's Budget and could change based upon final 
Congressional Appropriations action. NIH looks forward to Congress' 
feedback on the usefulness of its Performance Plan, as well as to 
working with Congress on achieving the NIH goals laid out in this Plan.
    The mandate of the Office of AIDS Research (OAR) is to set the 
scientific agenda by planning, coordinating, and evaluating the vast 
and diverse NIH AIDS research program and by developing the AIDS 
research budget, based on the most compelling scientific priorities 
that will lead to better treatment and prevention of HIV infection and 
AIDS. We establish these priorities through a collaborative process 
involving all of the NIH institutes as well as non-government experts 
from academia and industry, with the full participation of the AIDS-
affected community.
    Mr. Chairman, these are my first Congressional hearings. I came to 
NIH last summer from semi-retirement after a long academic career in 
the field of viral pathogenesis and epidemiology. My early career was 
devoted to the control of the polio epidemic. My experiences during 
that epidemic shaped my decision when Dr. Varmus asked me to come to 
Washington to head the OAR. I accepted the job based largely on three 
beliefs: first, that AIDS is the most devastating and critical public 
health epidemic to threaten the world in our lifetime; second, that, as 
we demonstrated with polio, it is possible to bring epidemics under 
control with an intense and well-managed research effort; and third, 
that the scientific breakthroughs we find for AIDS will also provide 
discoveries benefiting a whole host of life-threatening illnesses that 
we know and even some that we don't yet know--those potential epidemics 
we will confront in the future. My testimony before you today is built 
around those three themes.
                        the unrelenting pandemic
    By any criterion, AIDS must be considered the great plague of the 
20th century. The magnitude of the pandemic is truly profound. The 
disease already has killed nearly 14 million people worldwide since its 
appearance in the late 1970s. Presently more than 30 million people are 
living with HIV/AIDS, most of whom will die in the next ten years. AIDS 
has significantly lowered the life expectancy in many nations of 
Africa, the global epicenter of AIDS. The first chart graphically shows 
the steep increase of new infections in Sub-Saharan Africa, but 
dangerous and burgeoning disease rates also threaten the vast 
populations of India, Southeast Asia, and China. Rapid increases are 
occurring in Eastern Europe and Central Asia, and HIV remains a serious 
threat in Latin America and the Caribbean.
    In reality, the pandemic consists of many distinct sub-epidemics. 
In the U.S., for example, the overall death rate due to AIDS has 
declined (chart 2). But it is critical to understand that the true 
picture of the epidemic is not reflected by death rates, because the 
rate of new HIV infections has not changed. That means that although we 
are delaying death, at least for a time, we have not slowed the 
epidemic. New HIV infections and AIDS-related deaths continue to 
increase alarmingly in many subpopulationsamong women, racial and 
ethnic minorities, heterosexuals, adolescents, drug users, and people 
over 50 years of age (chart 3). AIDS continues to affect those most 
disenfranchised in our society--the poor, the homeless, and those with 
addictive or mental disorders. AIDS remains one of the leading causes 
of death among all Americans aged 18 to 45, and it is the number one 
cause of death among African American men in that age group. While the 
epidemic has stabilized among white gay men overall, it is increasing 
among younger homosexuals.
                        a transmissible disease
    The transmissible nature of HIV--between individuals and across 
borders and populations--makes it radically different from non-
transmissible diseases such as heart disease and cancer. There is the 
potential for unlimited spread, but there is also the possibility for 
control of the pandemic--in a way that can never be possible for 
noninfectious diseases. The impact of an intervention that reduces the 
probability of transmission, breaking the link in the epidemic chain, 
extends far beyond the treated or protected individual. Chart 4 shows 
the results of our efforts against two other infectious diseases, 
tuberculosis and polio, which were brought under control through 
effective therapeutic and preventive interventions. It illustrates why 
I took this job and why I believe that our research efforts can, and 
must, bring about a similar result for AIDS.
    But we remain discouragingly far from that goal. The changing 
demographics of the epidemic demand careful consideration as we plan 
our research agenda, because different prevention and intervention 
strategies must be applied to each subepidemic, here and around the 
world. Through the annual AIDS research plan and this budget, OAR is 
focusing the NIH AIDS research enterprise on what we have named 
``intervention research,'' targeting both short and longterm 
opportunities to prevent transmission and to treat infection and 
disease.
              priority for intervention: better therapies
    Ground breaking research in basic biology, spearheaded by NIH and 
fostered by my predecessor, Bill Paul, has revolutionized drug design 
that is benefiting the fight not only against AIDS, but against other 
diseases. This basic research was the foundation for the development of 
a new class of drugs, known as protease inhibitors, that are extending 
the length and quality of life for many HIV-infected individuals here 
in the U.S. (chart 5). But the list of serious problems associated with 
these new therapies is long: Even with therapy, the virus has not been 
completely eliminated from the body and may still be transmissible. We 
do not know how long the benefit of therapy will last or whether immune 
function of treated individuals can be restored. There are many for 
whom the new drug regimens have not been effective or for whom the 
side- effects are not tolerable. Serious complications of therapy are 
being identified, including metabolic disorders and deforming lipid 
deposits. Many patients are unable to adhere to the complicated drug 
schedules. Drug resistant viral mutants are beginning to emerge, 
representing a new and dangerous threat to public health. We have an 
urgent challenge to develop simpler, less toxic, cheaper drug regimens; 
new generations of antiviral drugs directed against different viral 
components; therapies to reconstitute immune function in treated 
patients; and more effective methods to enhance access and adherence to 
complex therapeutic regimens.
            priority for intervention: women and minorities
    Heterosexual transmission, the primary route of HIV infection 
worldwide, accounts for an increasing proportion of new infections 
among women and racial/ethnic minorities in the U.S., and we are 
directing resources toward new interventions that will have the 
greatest impact on these groups. For example, we are supporting 
research to understand the pathogenesis of HIV disease in women and to 
develop effective and acceptable female-controlled methods to block HIV 
transmission, such as microbicides.
    On October 27, 1998 the Administration and the Congressional Black 
Caucus announced a major initiative to address the disproportionate 
impact of HIV/AIDS in minority populations. In addition to the $359.3 
million investment in fiscal year 1999 (chart 6) already targeted to 
AIDS research in minority populations, OAR, in collaboration with the 
Office of Research on Minority Health and the Office of Research on 
Women's Health, allocated an additional $7 million for the new 
initiative. These funds will support projects to: increase the number 
of minority investigators conducting behavioral and clinical research; 
target the links between substance abuse, sexual behaviors and HIV 
infection; and increase outreach education programs for minority 
physicians and at-risk populations.
    NIH has devoted resources to improve research infrastructure and 
minority training opportunities, and we will continue to assure the 
participation of minorities in clinical trials and in natural history, 
epidemiology, and prevention studies. We are focusing on interventions 
that address co-occurrence of other STDs, hepatitis, drug abuse, and 
mental illness, and those that consider the role of culture, family, 
and other social factors in minority communities.
        priority for intervention: the quest for an aids vaccine
    To control the pandemic for all individuals, communities, and 
nations at risk, a safe and effective vaccine is the critical missing 
element in our armamentarium. Vaccine research remains one of the 
highest priorities, and my personal consuming goal. With this budget 
request, NIH will have increased funding dedicated to the discovery of 
an AIDS vaccine by more than 100 percent over the past 5 years (chart 
7). The AIDS Vaccine Research Committee, chaired by Dr. David 
Baltimore, and on which I serve, is pursuing new avenues for vaccine 
investigation. Construction of the NIH Vaccine Research Center is 
underway.
    Existing vaccines were developed against acute viral illnesses. 
None of those were as difficult to formulate as an AIDS vaccine, in 
part because of the persistent and insidious nature of HIV. We are 
beginning to unravel a wide variety of questions about the structure of 
the virus, the way it stimulates the formation of antibodies, the 
protective role of different components of the immune response, and the 
mechanism of viral escape from immune surveillance. It will probably be 
important to utilize primate models to screen a multitude of candidate 
immunogens and then to test the most promising products in human 
clinical trials.
           priority for intervention: international research
    Because HIV has spread readily around the globe, without respect to 
political boundaries, it can only be controlled through a global 
program of interventions. More than 90 percent of new infections occur 
in developing countries, where therapeutic interventions are 
unaffordable and undeliverable. NIH must pursue interventions that can 
be implemented in these resource- and infrastructure-deprived nations. 
Our vaccine research efforts underscore the crucial role of NIH in 
addressing prevention and treatment needs worldwide. In addition, a 
recent clinical trial demonstrated that a modified less expensive AZT 
protocol, could reduce mother-to-child transmission by 50 percent. NIH 
has established research and training programs in many developing 
nations. To further these efforts, OAR has established an International 
AIDS Research Collaborating Committee to bring together all of the 
Departments of the U.S. government conducting AIDS research and our 
international partners, including the UN Joint Programme on AIDS and 
the World Bank.
                   benefits to other disease research
    Because of the unique nature of HIV--the way the virus enters a 
cell, causes infection, affects every organ system, and unleashes a 
myriad of opportunistic infections and cancers--and the pace at which 
the knowledge base has been expanded, AIDS research is also unraveling 
the mysteries surrounding many other infectious, malignant, neurologic, 
autoimmune and metabolic diseases. AIDS research has provided an 
entirely new paradigm for drug design and development to treat viral 
infections. The drug known as 3TC, developed to treat AIDS, has been 
shown to be the most effective therapy for chronic hepatitis B 
infection. Drugs developed to prevent and treat AIDS-associated 
opportunistic infections also provide benefit to patients undergoing 
cancer chemotherapy or receiving anti-transplant rejection therapy. 
AIDS research has provided vast information about human immunology and 
immune reconstitution, and is providing new understanding of the 
relationship between viruses, the immune system, and cancer. The 
investment in AIDS behavioral and social sciences research has provided 
effective strategies for intervening in other diseases modified by 
individual behavior. AIDS has revolutionized the way we conduct 
research, empowering patients, particularly women and minorities, to 
participate in clinical trials, in the design and implementation of 
research protocols, and in setting priorities for this research.
    The budget authorities provided to OAR, allowing us to direct 
resources to the most important scientific priorities, are even more 
critical today as scientific opportunities change and funding levels 
fluctuate. The Nation has made a wise investment of resources in the 
NIH AIDS research program, and we are deeply grateful to the Committee 
for your steadfast support. I believe that this investment will 
ultimately yield a high return for the nation and the world.

                      Professional Judgment Budget

    Senator Specter. Well, thank you very much, Dr. Varmus.
    I appreciated the brief meeting you and I had the week 
before last, and I had asked for NIH proposals on what could be 
accomplished with additional, substantial additional funding. 
We will make all of that a part of the record.
    I am pleased to see that there is a public disclosure of 
the desired figure of $19.3 billion. Am I incorrect about that?
    Dr. Varmus. I am not certain. That number, of course, is 
the number that you requested as a professional judgment 
budget. The numbers we actually submitted to the Office of 
Management and Budget and the Department earlier in the process 
were considerably lower than that.
    Senator Specter. Well, we like your professional judgment, 
Dr. Varmus.
    Dr. Varmus. Thank you.
    Senator Specter. We understand the constraints of the 
Office of Management and Budget. We understand you are a team 
player.
    Is this Dr. Varmus' yellow light?
    Ms. Taylor. Yes.
    Senator Specter. It is not my yellow light. [Laughter.]
    Dr. Varmus. Always pleased to be under time and under 
budget.
    Senator Specter. Well, those are commendable traits, Dr. 
Varmus.
    But the $19.3 billion figure is what you think you need in 
order to carry out the research and handle the applications and 
the grant requests which are before the various Institutes, 
correct?
    Dr. Varmus. That number represents what we could do under 
optimal fiscal conditions if we were to exploit in a reasonable 
way all of the opportunities that are before us. We do think we 
can operate effectively under the President's budget and under 
many intermediate phases of funding.
    Senator Specter. Well, we understand your effective 
operation and you are a team player. But we appreciate the 
other figure so we have a guidepost.
    The figure that I asked you privately I think ought to be 
put on the record here. The $2 billion which has been added is 
a figure which you can assimilate and can use efficiently, 
correct?
    Dr. Varmus. Absolutely. We have documented that very 
carefully for 1999 with the tables that I have provided to you 
and many Institutes have also provided to you.

                       Cervical Cancer Mortality

    Senator Specter. Let me ask for a very brief response from 
Dr. Klausner on the headlines today about cervical cancer 
mortality could be cut by half with chemotherapy and radiation. 
What is the prospect for further advances like this if you get 
your, as Dr. Varmus calls it, your optimal budget contrasted 
with your OMB budget?
    Dr. Klausner. The announcement that we made yesterday, 
which was the result of five NIH-funded clinical trials, is an 
example of the productivity of the clinical trials system----
    Senator Specter. It was not timed for today's hearing, was 
it?
    Dr. Klausner. It was not.
    Senator Specter. Well, it should have been.
    Dr. Klausner. Coincidence.
    Those trials actually demonstrate, as you point out, for 
locally advanced or regional cervical cancer, that the 
combination of chemotherapy and radiation therapy results in a 
30 to 50 percent reduction in mortality, quite a significant 
advance. There is no question that it is these sorts of 
advances, and there are others that I put just from this past 
year in my written statement, that our clinical trial system, 
drug development, drug discovery system, will allow us to make.
    It is very much, as Dr. Varmus says, that there is a high 
opportunity to resource ratio that I think we all face.
    Senator Specter. Well, we compliment you, Dr. Klausner, on 
that, and I know it is representative of what everybody at the 
table could be testifying about. That is why we want to back 
you up.

               Stem Cell Research and Parkinson's Disease

    I would like to ask, within the limits of the time that we 
have here, about stem cells and what we have heard with respect 
to, say, Parkinson's disease. Dr. Gerald Fischbach is the 
Director of the relevant institute, and we had some testimony 
at one of the earlier three hearings on this subject where, 
with some pushing, it had a ballpark figure of being able to 
conquer Parkinson's--maybe that is an inexact legal term, as 
opposed to a medical term--in a 5 to 10-year span.
    But I would like to hear from you, Dr. Fischbach, what the 
prospects are with this stem cells research as applied to 
Parkinson's to finding a cure?
    Dr. Fischbach. I am very optimistic about the treatment of 
Parkinson's disease, because we know where it originates and we 
know the type of cells that are affected, at least initially, 
in the disease. There has been tremendous progress, both in 
implantation of cells and using fetal tissue, both in Europe 
and in this country.
    These cells are intercalated into the brain tissue. We have 
learned how to make them survive over long periods of time, and 
they seem to serve the function of restoring a missing 
neurotransmitter.
    Senator Specter. Dr. Fischbach, I want to get to 
Alzheimer's before my red light goes on. Could you give me a 
ballpark figure of how long between now and conquering 
Parkinson's?
    Dr. Fischbach. My best guess and my hope is within the next 
10 years, and that stem cells will be enormously important in 
this effort.

               Stem Cell Research and Alzheimer's Disease

    Senator Specter. Thank you very much.
    Dr. Richard Hodes, as to Alzheimer's, same question.
    Dr. Hodes. Similar to the response you heard regarding 
Parkinson's disease, in the area of Alzheimer's disease we have 
over the last years gained enormously in our understanding of 
the nature of the underlying processes, the cells that are 
destroyed, and the nature of the process.
    I would have to say, in reality there remains a great deal 
to be learned before we are able to diagnose the disease early 
enough, and to intervene and prevent a process which involves 
loss of neurons. The ability to regenerate neurons through stem 
cells and through growth factors, together with a recent 
finding that even in the adult brain nerve cells can reproduce, 
something they were thought not to be capable of--provides a 
sense of optimism.
    In response to Congressional language in this past year, 
and in collaboration with a number of NIH Institutes an 
Alzheimer's disease prevention initiative has begun which will 
substantially expand our efforts to achieve early diagnosis. 
For example, this year we will begin for the first time a trial 
designed to prevent the onset of disease, rather than to 
attempt to arrest or treat disease in its more advanced stages.
    We are optimistic that, with the generous increase in 
budget and its application to scientific opportunities, we will 
see an acceleration of progress towards treatment and 
ultimately prevention.

                  Opportunities in Stem Cell Research

    Senator Specter. Thank you very much. My red light is on, 
so I am not going to ask any additional question for an oral 
response. But I would appreciate it if each of you would give 
the subcommittee a written response on what you would hope to 
achieve from stem cell research. That is going to be a real 
battleground in the immediate future, and I would hope that we 
could follow the path with fetal tissue, where we are able to 
use fetal tissue for research where it was shown the abortions 
were not performed to get the fetal tissue.
    We have the HHS opinion, but this is going to be a real 
battleground. To the extent we are armed with specifics from 
the experts, the research scientists, as to what you think you 
can accomplish, it would be very, very helpful.
    [Clerk's note.--Due to its volume, the above mentioned 
document has been retained in subcommittee files.]

                     Stem Cell Research Guidelines

    Senator Specter. Senator Harkin.
    Senator Harkin. Thank you, Mr. Chairman. I just back you on 
that. I think it just holds a lot of promise, and I'm glad that 
we got the ruling that we did. I think it comports with the 
law, as I said before, that we wrote here. I hope it does not 
become too much of a battleground. I hope we can proceed on 
this in a very determined and yet ethical manner, and I believe 
we can.
    But I just think the promise there is so much that we have 
got to press ahead, and I assume that you are pressing ahead in 
stem cell research, given the ruling by the counsel--attorneys 
for the Department.
    Dr. Varmus. Just to respond briefly, since we met last 
time, we have formed an oversight committee which is going to 
meet early in March. We are preparing draft guidelines. As you 
know, our investigators are not to use Federal funds for stem 
cell research until those guidelines are in place, fully 
understood, and we have subjected them to public comment for 30 
days.
    Senator Harkin. Yes, but you will have those guidelines out 
within a couple of months surely?
    Dr. Varmus. Absolutely.

                          Human Genome Project

    Senator Harkin. So I will not delay it any further. The 
only thing I want to state publicly, we have talked about this 
privately, and that has to do with the Human Genome Project, 
which as you know I have been a strong supporter of for many 
years. There has been a lot of information and developments in 
the private sector regarding the mapping and sequencing of the 
gene, especially the sequencing.
    Again, just from the record, either you or Dr. Collins, to 
just talk about how you are coordinating with the private 
sector in this regard. You mentioned it to me once and again I 
would just like to have some more elaboration on that.
    Dr. Varmus. We have had a conversation. Remember, the 
private sector is a lot larger than simply the Celera Genomics 
Company, which we have been hearing about, because there are 
many other private organizations that are accumulating sequence 
data but holding them privately, whereas Celera pledges to 
release data quarterly.
    Our interactions with Celera have been very productive, and 
very recently we announced an agreement to work together to 
finish the sequence of the fruit fly, Drosophila Monogaster, 
through a coordinated effort between Celera and our grantees in 
California and elsewhere. We are continuing to talk to them 
about the best way to approach the Human Genome Project.
    As you know, our 5-year plan has now pushed forward the 
time at which we expect to have the sequence finished, and we 
are working with Celera in efforts to try to make the most of 
the different approaches that are being undertaken. They have 
taken a very different strategy for carrying out the 
sequencing, and we think that there is the potential for 
blending their volumes of data with our more systematic 
approach in a way that will help both sides and provide more 
public data.

                            Patenting Genes

    Senator Harkin. Should we--how concerned should we be about 
the whole aspect of the patenting of genes and the implications 
that this might have for even further research? Is it alarmist 
or not for some people to be saying, well, with the amount of 
patenting that is going on, that it is really going to cut down 
on the amount of research that is needed? Or under the patents 
that we have will adequate research be allowed or be able to 
continue under the kind of patenting that is happening right 
now with the genes?
    Dr. Varmus. Well, these are very difficult issues, Senator 
Harkin. Our position has been that sequencing--sorry, that 
patenting of newly isolated genes whose functions and medical 
importance are identifiable at the time of patenting can be a 
spur to development of the next steps that would benefit the 
public, and we believe that has been the case in the instance 
of several recently cloned genes.
    We take a somewhat different position about cloning 
sequence--sorry, patenting sequence at random, a sequence whose 
functional attributes cannot be ascertained. We have not, for 
example, at the NIH pursued patent rights for a sequence whose 
function and medical importance is not known.
    Senator Harkin. Again let me try to sharpen that a little 
bit. If certain sequencing of genes are patented, could it have 
a deleterious effect on further research on the use of those 
genes for, let us say, relieving--for certain medical 
procedures and stuff? Could it have a deleterious effect?
    Dr. Varmus. Senator, the issues that apply to the patenting 
of genes are similar to the issues that apply to the patenting 
of other intellectual property. That is, by providing some 
patent protection to discoverers and to licensees, we encourage 
them to develop the fruits of that information for public 
welfare, but also----
    Senator Harkin. I do not have any problem with that, but in 
terms of using those genes or the knowledge of the sequencing 
of those genes for other basic research?
    Dr. Varmus. Yes, I understand that, and that is the 
balance. That is, in general the sequence information per se is 
available and the sequence information can be taken advantage 
of. But the development of specific products would require 
licensing from the patent holder.
    Senator Harkin. I just, I think it is something, I do not 
know the answer to it, but I think there may be some real 
problems out there. I do not want to be alarmist about it, but 
I just think there are some problems in terms of further basic 
research that might be clipped, might be stopped or at least 
not proceed apace because of the patenting.
    Dr. Varmus. You are raising a general issue with respect to 
research tools that we have taken very seriously at the NIH. We 
have been looking into ways in which we can ensure that not-
for-profit research can proceed even in the presence of 
intellectual property protection that has a full basis in 
existing law.
    Senator Specter. Thank you very much, Senator Harkin.
    Senator Stevens.

                     Prostate Cancer Research Plan

    Senator Stevens. Thank you.
    That is a very interesting subject, Senator Harkin, and I 
think you have to look at the flow of funds into the research 
base that comes from the freedom that is involved there. There 
is a balance, I am sure we all agree.
    I would like to chat with you a little bit, Dr. Varmus, 
about the problem of the report that we directed to be 
presented to the House and Senate Appropriations Committees 
within 6 months outlining the NIH's professional judgment for 
prostate cancer research for the next 5 years. Do you have a 
team working on that?
    Dr. Varmus. We have a report that Dr. Klausner might want 
to talk about, that presents a very thorough and excellent plan 
for prostate research for the next several years.
    Senator Stevens. Has that been done in accordance with the 
request we made in the last appropriations bill?
    Dr. Klausner. Yes, although we are finishing that up for 
the April 1st deadline, as required in the language.
    Senator Stevens. We will have it in April?
    Dr. Klausner. Yes.
    Senator Stevens. That is good. I notice from the outline 
here that Bettilou has given to me of the way the funds are 
distributed in your budget for research initiatives and 
programs that prostate cancer has an increase of $9 million in 
this budget. We increased it some $55 million last year. Will 
your report deal with the amount of funds that could be 
utilized in prostate cancer research?
    Dr. Klausner. Yes, it will be, as requested, a professional 
judgment report.
    Senator Stevens. I do not want to prejudge that, but think 
that--as you know, last year I had a little battle with the 
chairman, and he won, about earmarking funds for cancer, 
prostate cancer research. I am alarmed at the rate or really at 
the allocation base for prostate cancer research as compared to 
other cancers. It does seem to me that this is a growing 
problem.
    I think American men are suddenly waking up to the fact 
that they have been sort of the last pigeonhole, more or less, 
in the cancer research base.
    Can we have a hearing on that report when it is prepared? 
Would it be best to postpone it until then, Dr. Klausner?
    Dr. Klausner. I would be delighted to do that. I think we 
will be talking to you next week as well about our 
implementation of a 50 percent increase this year of funds 
allocated for prostate cancer.
    Senator Stevens. That is this year. I am talking about the 
budget we have got for next year and there is hardly any 
increase. It is just not even the rate of inflation for NIH. So 
I want to make sure that the initiative does not sputter out in 
terms of what we are doing. But I will wait for the report. I 
do not think it would be fair. If we ask for a report, we ought 
to wait for it.

                     Cancer in Minority Populations

    Let me ask you on another matter, though. Dr. Varmus, my 
information is that the Institute of Medicine has put out a 
report that calls on the National Cancer Institute to do more 
to reduce the incidence of cancer in minority populations in 
particular. It is sad for me to note that Alaska Natives of all 
ethnic groups have among the highest mortality rates in the 
country from cancer, which surprised me.
    I know that we have unique problems with our Native 
Americans, and with the Indian Health Service involved in 
particular, but have you instituted any programs that deal with 
reducing those extremely high rates of mortality from cancer as 
far as the minority population of the country is concerned?
    Dr. Varmus. The Cancer Institute has established an office 
to focus especially on cancer in special populations, and they 
have been working closely with the authors of the IOM report. I 
believe that the recommendations in the IOM report have largely 
already been responded to, even in the course of preparing the 
report.
    Dr. Klausner might want to comment further about specific 
programs that address Alaska Natives.
    Dr. Klausner. Yes. We have several programs specifically to 
address these issues, including collaboration with the Indian 
Health Service, as well as a support for the registry 
monitoring surveillance system throughout Alaska. This is an 
essential part of initiating cancer control efforts. There are, 
again, a variety of new initiatives this year specifically in 
Alaska and with other Native American populations to use that 
registry information to initiate local infrastructures for 
addressing questions such as late diagnosis, and delay between 
diagnosis and treatment, which is in some part, from previous 
research, responsible for these altered survival rates which 
you are referring to.

                Access to Health Services in Rural Areas

    Senator Stevens. If you will permit me just one comment, 
these people live in an area that is twice the size of Texas, 
with a population a little over 100,000 people, and to realize 
that they have trouble getting diagnosis and treatment, you 
know, is just tautological as far as I am concerned. It is not 
there. If it is a problem of diagnosis and treatment, I think 
we ought to collaborate on that and see what we can do.
    I do not know of any of the systems that would be available 
for diagnosis or treatment that is available in that whole area 
that Alaska Natives live in. This I think may be just one of 
our basic mistakes in not locating some new high tech 
diagnostic equipment in places like Nome and Barrow. I mean, if 
they have got a problem caused by not being able to get down to 
Anchorage or Seattle for diagnosis and treatment, that problem 
is geographical. It is not something that is indigenous to 
their population. It is just where they live.
    Dr. Klausner. I think there is a combination of problems as 
we see in different populations. But you are absolutely right, 
access to state of the art diagnosis and treatment in rural 
areas or sparsely populated areas is very difficult in many 
instances. There are a variety of initiatives with other 
agencies, including across the NIH, particularly with 
telemedicine.
    It is going to be very difficult to get equipment available 
directly to everyone. New ways of communicating, new ways of 
providing that state of the art access without actually being 
there, are some of the programs that we are involved in, 
primarily with other agencies as well as with the State.
    Senator Stevens. I look forward to visiting with you on 
that.
    Thank you very much, Mr. Chairman.
    Senator Specter. Thank you, Senator Stevens.
    Senator Cochran.
    Senator Cochran. Mr. Chairman, thank you.

                          Jackson Heart Study

    Dr. Varmus, we appreciate very much the funding of the 
Jackson Heart study. This is a program that is going to do 
special research of a Mississippi population that has 
unacceptably high cardiovascular disease numbers. The 
University of Mississippi Medical Center is involved, Jackson 
State University, and Tugaloo College in the Jackson area. We 
have high hopes for that being the basis for some progress in 
dealing with that very serious problem in our State. We hope 
that more research can be done in Mississippi, as a matter of 
fact, on these chronic disease problems in our State.
    The center where this study is located was also recently 
the host of a meeting that Dr. Gorden came down and attended on 
juvenile diabetes and other diabetes-related health problems. I 
want to thank him again for being able to be there. It was 
something that was very warmly received by the medical 
community in our State.

                           Diabetes Research

    I am curious to know what the outlook is now, if you can 
tell us or Dr. Gorden can tell us, on coming up with--I guess 
in following up the chairman's question on Alzheimer's and 
Parkinson's--some cures or treatment plans for diabetes that 
can give hope to the community that has to deal with those 
serious problems.
    Dr. Varmus. There is a great deal of optimism these days, I 
believe, in new approaches to diabetes. As you probably know, 
there is a report about to be issued on new prospects for 
diabetes research as a result of a working group established by 
Congressman Nethercutt. Among the things that are outlined, at 
least one initiative connects to Senator Specter's question 
about stem cells. It addresses an interest in being able to use 
stem cells as a means to allow cells to grow in the body of an 
individual with juvenile diabetes and to produce insulin 
chronically.
    There are advances that have been made in transplantation 
of pancreatic tissue. Several NIH Institutes are working on 
means to allow transplantation of such organs to proceed by 
controlling the immune response to transplants. We believe that 
transplantation and better control of glucose levels offer two 
important modalities for improving survival and the reduction 
of complications for patients with diabetes.
    Senator Cochran. Let me ask Dr. Gorden, a fellow 
Mississippian out there. We appreciate very much his presence 
this morning. What can other NIH Institutes do to become more 
involved? I know this is not just centered in one Institute. 
Diabetes research cuts across a number of Institutes. Is there 
a way to coordinate this more effectively, or can Congress do 
something that would be more helpful in directing more research 
in this area?
    Dr. Gorden. First of all, I very much appreciated being in 
Jackson with you, Senator Cochran. It was a real pleasure.
    I think that there are a number of NIH Institutes. One of 
the models is the special appropriation we received for type 
one diabetes, which was a trans-NIH effort, and I think it has 
been a model program in which nine NIH Institutes have 
participated in a variety of programs related both to, in this 
particular case, type one diabetes and utilizing many of the 
technologies that Dr. Varmus has mentioned.
    But in addition, I would like to emphasize some of the 
things that are terribly important. That is, our ability now to 
inaugurate prevention trials. We have two major national 
prevention multi-center trials under way in both type one and 
type two diabetes. I think that what we have learned now from 
clinical trials in terms of preventing the morbidity of the eye 
and kidney and nerve complications of diabetes, we can enhance 
that enormously by these prevention efforts. I think that has 
really been one of the major new areas of approach.
    So we are very optimistic and very encouraged. We are 
pleased to receive this report and we will certainly move 
forward with it.
    Thank you.

                 National Reading Panel Progress Report

    Senator Cochran. If I could ask Dr. Duane Alexander a 
question about this reading report. I received a copy just as I 
came into the hearing room, the National Reading Panel Progress 
Report. I want to congratulate you and those who have worked 
with you on this progress report of the National Reading Panel.
    We set this up 2 years ago with language in this 
appropriations bill to try to find ways to analyze research in 
the physical and developmental problems that cause reading 
disorders and what can be done about it with new classroom 
techniques and other initiatives.
    Could I ask you how far you think we are now from being 
able to have classroom-ready techniques and technologies to 
acquaint teachers and parents with how to diagnose or observe 
more effectively those with reading problems and then doing 
something to deal more effectively with those reading problems?
    Dr. Alexander. Senator Cochran, it is our hope that the 
National Reading Panel will be a major step forward in 
analyzing the research literature that is available to instruct 
us as we move to more effective instruction of the children in 
our schools in how to learn to read. The panel has completed a 
detailed development of methodology to analyze the more than 
25,000 articles in the research literature, to assess its 
quality and evaluate what is ready for application, what has 
been adequately demonstrated scientifically to be useful and 
valid.
    The recommendations that we expect to come from this panel 
we hope will provide for education what we talk about in 
medicine as evidence-based medical practice. We hope that we 
will bring evidence-based instruction for teaching reading to 
the schools.
    Senator Cochran. Thank you.
    Thank you very much. I ask that the enclosed letter from 
Dr. Duane Alexander and the National Reading Panel Progress 
Report be included in the record of today's hearing, following 
the exchange between Dr. Alexander and myself.
    Senator Specter. Thank you, Senator Cochran.
    [The letter follows:]
                    Letter From Dr. Duane Alexander
           Department of Health and Human Services,
                             National Institutes of Health,
                                   Bethesda, MD, February 22, 1999.
Hon. Thad Cochran,
U.S. Senate,
Washington, DC.
    Dear Senator Cochran: As you requested, I am pleased to transmit to 
you the enclosed Progress Report of the National Reading Panel (NRP), 
which I received today. The Report details the activities and 
accomplishments of the NRP to date, as well as its plans to complete 
its charge in early 2000. It has proven to be a major undertaking, only 
recently completed, to develop the scientific methodology that now will 
enable the Panel to systematically assess the research literature on 
reading and the teaching of reading. The adoption of this methodology 
by the Panel will enable it, for the first time ever, to use 
trustworthy scientific evidence to produce recommendations and 
strategies that can be used directly by educators in the Nation's 
classrooms.
    Highlights of the Panel's Report include:
  --The Background Section provides an overview of the reading problems 
        in this country; their societal costs; a history of the so-
        called ``reading wars;'' and the importance of reading research 
        to finally move us beyond these counterproductive disputes.
  --The second section details how I, in consultation with the 
        Secretary of Education, established the Panel in April of 1998; 
        and provides information on the 14 members of the Panel; and 
        the charge to the Panel.
  --Section 3 details the accomplishments of the Panel to date. 
        Specifically, in the ten months since its establishment, the 
        NRP has held five meetings of the full Panel, numerous meetings 
        of its six Subgroups, and conducted five regional meetings 
        across the country to listen to and learn from the many voices 
        of parents, educators, community members, decision-makers, and 
        civic and business leaders.
  --The fourth section reviews the lessons learned by the NRP from the 
        44 invited presenters and 73 members of the public who 
        addressed the Panel at the regional meetings.
  --The fifth section deals with the Panel's development of the 
        research methodology it will use to conduct the assessment of 
        the research literature, and details the specifics of the 
        methodology it has adopted.
  --The last section lays out the work yet to be accomplished, and the 
        Panel's expectations for its final products to help construct 
        the needed bridge between research and practice.
    I will continue to keep you informed of the progress of the Panel 
as it completes it work.
            Sincerely yours,
                                     Duane Alexander, M.D.,
                                                          Director.
    Enclosure.

    [Clerk's note.--Due to its volume, the above mentioned 
report is being retained in subcommittee files.]
    Senator Specter. Senator Hollings.

                       Cervical Cancer Treatment

    Senator Hollings. Dr. Klausner, when I saw that headline 
that you were now having dramatic results on breast cancer with 
the combination of both radiation and chemotherapy, I was 
thinking that if I were a doctor I would be embarrassed to 
announce it. Are you folks so structured and segmented out 
there that each doctor only tries one cure?
    I mean, how about why do you not put in interferon, try all 
three and see what happens? I mean, how is it that the best 
brains in medical research come out and finally decide to not 
just give the radiation, but give the chemotherapy along with 
it?
    Dr. Klausner. There actually have been other combination 
therapy attempts which did not show an advantage. In fact, it 
was one particular drug, Cisplatinum, that was the critical 
thing in combination with the radiation therapy. So this was 
part of a very long and I think quite logical process of trying 
different drugs, different combinations.
    Previous results suggested that the combination of 
chemotherapy and radiation was more toxic but no more 
effective. So it is not just adding more. What we have now 
actually developed from smaller trials, demonstrating the value 
of using drugs that act by different mechanisms. In this 
particular type of cell, the cervical cancer cell that has 
spread, apparently the type of DNA damage caused by the 
platinum-based compound is a particular sensitizer to 
radiation.
    Senator Hollings. It is just not simple chemotherapy and 
radiation by itself.
    Dr. Klausner. I appreciate your point, but I think it is 
more complicated and it does take time through these clinical 
trials to find out which dose, which drugs, which combination, 
what order, maximizes the outcome and minimizes the toxicity.

                          Prevention Research

    Senator Hollings. What amount of your budget goes to 
prevention research?
    Dr. Klausner. It of course depends how prevention is 
defined. In terms of trying to understand the causes of cancer, 
which we think is an essential part of prevention research----
    Senator Hollings. Right.
    Dr. Klausner [continuing]. As well as direct interventions 
for prevention from behavior to new drugs to prevent, about 
$500 million out of the $2.9 billion.
    Senator Hollings. The reason I ask is that we have got some 
dramatic initiatives down in my own back yard with respect to 
prevention and they have now associated the cancer center there 
at the Medical University of South Carolina along with the 
American Health----
    Dr. Klausner. Yes.
    Senator Hollings [continuing]. In New York, and we find out 
that American Health has just got backed up all kinds of 
wonderful research without any clinical trials. We have got the 
opportunity for all the clinical trials that you could possibly 
think of, because we are number one. Listening to Senator 
Stevens, we are number one in breast cancer, cervical cancer 
deaths. In fact, with prostate we find that, with our minority, 
our black population, it is an accelerated type cancer whereby 
you have got a chance with, let us say, white folks; with black 
folks, once discovered you have got no chance at all. It just 
goes right through the system.
    We find such discrepancies out from the surveys that the 
Medical University and medical professionals are conducting in 
South Carolina. The University now has a van that travels 
around a large part of the State, conducting screenings for 
heart disease and diabetes and everything else, and also taking 
these surveys from the North Carolina line to the Georgia line. 
We are finding out a heck of a lot of good research, as well as 
providing important treatment, particularly to the minority 
population of my State, which normally is too scared or 
hesitant to get screening in the first place or too poor to pay 
a doctor to treat them if screening does turn up something.
    This program promises to be a great success. The local 
churches and community leaders support it. But I think we have 
got to do more in the way of prevention because in my opinion 
we could be saving even more lives and detecting cancer more 
frequently. Dr. Klausner, I look forward to talking to you more 
about this.
    Dr. Klausner. I fully agree with you. Let me just say, we 
are very pleased about this new arrangement between the NCI-
funded cancer center in New York and the Medical University of 
South Carolina. We agree with you. We have been very involved 
in this and we think this is going to be a great opportunity 
for expanding activities on both ends.
    Senator Hollings. Thank you very much. Thank you, Dr. 
Varmus.
    Thank you, Mr. Chairman.
    Senator Specter. Thank you very much, Senator Hollings.
    Thank you all. This is an extraordinary group. We really 
deeply appreciate your work. We have put the congressional 
money where our praise is and we intend to do more of that.
    Thank you, and that concludes our hearing.

               prepared statement of senator larry craig

    We have received a prepared statement from Senator Larry 
Craig, we will have it inserted into the record at this point.
    [The statement follows:]

               Prepared Statement of Senator Larry Craig

    Mr. Chairman, I would like to thank you for holding this 
hearing today on the President's budget requests for the 
National Institutes of Health and the Department of Health and 
Human Services. I sincerely appreciate the time each of you has 
spent on expressing the importance of the funding for each 
particular department and more specifically the multitude of 
diseases that plague so many.
    In staying within the confines of a balanced budget we are 
faced with a difficult challenge, making it more important than 
ever that we get our priorities straight. The testimony of our 
witnesses today will be very helpful in that process of 
priority-setting and goal setting for a balanced budget.
    Again, I would like to thank the chairman and our panel of 
witnesses here today. The information you provide will be of 
great assistance to us as we consider the funding levels 
appropriated to the Departments of Health and Human Services 
and the National Institutes of Health.

                     Additional committee questions

    Senator Specter. 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 Institute for response subsequent to the 
hearing:]
              Questions Submitted by Senator Arlen Specter
                   funding of research project grants
    Question. You are proposing to provide no inflation adjustments for 
non- competing awards. Does the average investigator with an ongoing 
project have to make cutbacks in the scope of research when faced with 
this circumstance?
    Answer. With the average non-competing direct cost budget in fiscal 
year 1999 at approximately $200,000, the loss of the 3 percent 
adjustment for inflation factor would be $6,000. We do not believe that 
NIH-supported research investigators will be adversely affected by this 
action.
    Question. What other effects are likely to be felt from this 
decision?
    Answer. The ability to support non-competing awards at the 
committed levels has been the cornerstone of NIH's financial management 
plan and has been a significant component of our ability to stabilize 
the level of funding of research project grants. Not providing 
inflation adjustments might affect the way in which applicants develop 
budgets in the future.
                        minority cancer research
    Question. What is the NCI fiscal year 2000 budget request for 
minority cancer research?
    Answer. The NCI fiscal year 2000 budget request for minority cancer 
research is estimated at a funding level of $144,000,000.
    Question. How does the proposed $30 million for minority cancer 
leadership initiatives break down? Is it $30 million per year?
    Answer. It is anticipated that NCI will support this leadership 
initiative with $5 to $6 million per year for a five-year period.
    Question. If not, over how many years?
    Answer. NCI anticipates that it will support this leadership 
initiative over a five-year period.
    Question. What will the $30 million fund?
    Answer. This new minority cancer leadership initiative is intended 
to create and maintain an infrastructure that will support a variety of 
community-based cancer awareness, prevention and control activities, 
foster collaborations between established researchers and minority/
underserved communities, and enable investigators from these 
communities to compete successfully for research support. The 
Initiative involves three phases: (1) Infrastructure-Capacity Building; 
(2) Establishment of Academic/Clinical Partnerships, and (3) 
Development of Grant Applications with Partners. Initial funding 
decisions will be based upon an applicant's demonstrated level of 
readiness, geographic and ethnic diversity, and scientific merit and 
activities initiated during each phase will continue for the entire 
award period. NCI anticipates being able to fund 8 to 10 leadership 
grants with this allocation. We are unable to be more specific at this 
time because the initiative may provide support for large projects 
(with a primary office and one or more regional units) or small-scale 
projects involving a single site. Funding levels for projects in the 
former category might, for example, include support for 2-3 FTEs in the 
primary office, 4-5 FTEs at each regional unit, and additional monies 
for facility cost, supplies, travel, and meeting support. Funding for 
small-scale projects would include support for 2-3 FTEs, facilities 
costs, supplies, travel, and meeting support. All applicants must set 
aside travel funds for PI's, Research Directors, and other key staff 
members to attend annual meetings to be held in Bethesda, Maryland.
    Question. How does that funding level compare with the funding 
level provided for the original minority cancer leadership initiatives?
    Answer. The funding levels (dollars in thousands) for the original 
minority cancer leadership initiatives are as follows:

        Fiscal year                                               Amount
1995..............................................................$5,219
1996.............................................................. 3,344
1997.............................................................. 4,126
1998.............................................................. 5,047

    The funding levels are comparable to those levels in the past and 
the NCI is committed to continuous support of the leadership 
initiative.
    Question. Is the Office of Research on Minority Health funding 
included in the proposed $30 million?
    Answer. The NCI Network initiative will be funded independently of 
the ORMH.
    Question. Can we receive, within 60 days, a plan from NCI and NIH 
to implement the IOM recommendations?
    Answer. The NCI staff is currently evaluating the IOM Report and 
its recommendations in detail. NCI takes this report seriously and will 
give it careful consideration in the context of its ongoing and planned 
initiatives for minority and medically underserved populations. Before 
the recommendations are implemented, however, NCI plans to convene a 
Special Populations Working Group to further assist it in evaluating 
the recommendations and formulating a response and implementation plan. 
We intend to convene this Special Populations Working Group within the 
sixty-day time frame cited.
    Question. Can we expect revised budget requests for NCI and NIH to 
address IOM findings on funding inadequacies and recommendations for 
increases in certain programs?
    Answer. Any revision in NCI budget requests in the future will be 
based on the findings, recommendations and implementation plan 
formulated with the assistance of the Special Populations Working 
Group.
                          evaluation set-aside
    Question. Section 241 of the Public Health Service Act allows the 
Secretary to use not more than 1 percent of any appropriations 
authorized under the PHS Act for the evaluation of the implementation 
and effectiveness of the PHS programs. The fiscal year 2000 request 
proposes to raise the limit to 1.5 percent. The funds are used both 
internally by NIH institutes to evaluate their programs, and are a 
major source of funding for the Agency for Health Care Policy and 
Research (AHCPR) and the National Center for Health Statistics (NCHS) 
within CDC. In fiscal year 2000, it is proposed that a very large part 
of AHCPR's budget, and all of the NCHS budget, come from the evaluation 
set-aside. The proposed increase would amount to an additional $80 
million that NIH would devote to evaluation activities. How much does 
NIH spend overall on evaluation activities?
    Answer. The table below reflects the amount spent by NIH on its own 
evaluation activities and in total in fiscal year 1998 and fiscal year 
1999 and an estimate for fiscal year 2000:

                    ONE-PERCENT EVALUATION SET-ASIDE
                         [Dollars in thousands]
------------------------------------------------------------------------
                                                  Fiscal years--
                                        --------------------------------
                                                                  2000
                                            1998       1999     estimate
------------------------------------------------------------------------
NIH....................................      5,500      6,500      2,830
Total..................................    104,445    123,574    227,697
------------------------------------------------------------------------

    Question. Of the evaluation set-aside, how much is used by NIH 
internally, and how much goes to support the shared resources 
represented by AHCPR, NCHS, etc.?
    Answer. In fiscal year 2000, the AHCPR share would increase by 
153.7 percent over fiscal year 1999 and would amount to 57.4 percent of 
the set-aside. Similarly, the NCHS share would increase by 59.7 percent 
over fiscal year 1999 and would amount to 35 percent of the set-aside. 
It is estimated that the NIH share would decrease from $6.5 million in 
fiscal year 1999 to $2.8 million in fiscal year 2000 due to the lower 
amount of funds available after the 1.5 percent set-aside; however, the 
exact distribution of the total one-percent evaluation funds not used 
to support NCHS or AHCPR has not yet been determined.
    Question. What direct benefits does NIH derive from the external 
activities supported with the evaluation funds?
    Answer. NIH benefits from the availability of the major national 
statistical systems run by NCHS which track changes in health status 
and the provision of health care; assess the effectiveness of public 
health programs; and identify health problems, risk factors, and 
disease patterns in the U.S. For example, NCHS supplies the cancer 
mortality data used by the National Cancer Institute for the annual 
cancer statistics reviews produced by its Surveillance, Epidemiology, 
and End Results (SEER) Program. NIH also benefits from the availability 
of studies and surveys supported by AHCPR that track medical 
expenditures and conduct research on improving the quality of health 
services, in order to help bridge the gap between what the medical 
scientists know and the actual health care delivered to patients and 
the community. Likewise, evaluations of the impact of crosscutting 
public health initiatives prepared by the Office of Public Health and 
Science (OPHS) and the Office of the Assistant Secretary for Planning 
and Evaluation (OASPE) are valuable to NIH, as well. All of these data 
sources and health services research studies serve as important inputs 
and feedback mechanisms to NIH that help it to direct and assess the 
effectiveness of its basic and applied research and prevention 
activities across many disease areas.
    Question. What benefits will NIH see from increasing the set-aside 
to 1.5 percent, which will add almost $80 million to NIH's amount?
    Answer. The benefits do not vary with a change in the percentage of 
the evaluation set-aside. All of the above activities are important to 
support, and because of the tight budget caps, their funding requests 
would have been reduced by about $100 million if the limit on the 
evaluation set-aside was not increased in the President's budget 
proposal.
                     nih research priority setting
    Question. The fiscal year 1998 Labor/HHS Appropriations Act 
mandated that a comprehensive study on NIH research priority setting be 
conducted by the Institute of Medicine (IOM). The study, entitled 
Scientific Opportunities and Public Needs: Improving Priority Setting 
and Public Input at the National Institutes of Health, was released on 
July 8, 1998. The study made 12 recommendations relating to allocation 
criteria the decisionmaking process, mechanisms for public input and 
the impact of congressional directives. The study particularly stressed 
that NIH needs to engage the public to a greater extent in informing 
the process of research priority setting. In response, NIH is setting 
up two types of bodies: (1) a Council of Public Representatives to give 
disease advocates greater access to the NIH policy-making process; and 
(2) Offices of Public Liaison in each of the individual institutes and 
the NIH Director's office. What are the responsibilities of the Council 
of Public Representatives and how will the Council's work and 
contributions be integrated into the NIH policymaking process?
    Answer. In order to obtain some public views about the roles, 
responsibilities and composition of the Council of Public 
Representatives (COPR), I held a public meeting on September 23, 1998. 
This meeting was useful in revealing the many ways the COPR can have an 
impact upon NIH. The primary roles of the COPR will be to (1) bring 
public views to NIH activities, programs and decision-making, (2) take 
information about NIH's progress and processes out to an even broader 
public, and (3) look at NIH's operations and help us evaluate 
performance. To elaborate somewhat, the COPR will be a public forum for 
discussing important issues, for example, NIH priority setting, 
clinical trials and managed care, privacy and genetics, health 
disparities among various populations, and many other matters that have 
an impact upon the public. We also hope that the COPR membership, 
people from all walks of life and based around the country, will help 
us communicate better with broad public audiences about NIH and help 
provide us even more public perspective. In addition, we expect that 
COPR will help us review NIH priorities and current mechanisms for 
public input to NIH decisions. The COPR has been chartered as an 
advisory committee under the Federal Advisory Committees Act. I am 
looking forward to the first meeting of the COPR, which will occur in 
the Spring, and to working with the COPR over time, because I think 
this group has the potential to have a significant impact upon how NIH 
operates and makes decisions across a broad spectrum of activities and 
programs.
                       offices of public liaison
    Question. What are the responsibilities of the new Offices of 
Public Liaison and how do they differ from the current Office of Public 
Affairs (or Public Information or Public Inquiry) in each of the 
institutes and Centers?
    Answer. Offices of Public Liaison have been established in each 
Institute and Center (if they did not already exist) and in the Office 
of the Director. In the Office of the Director, the current Office of 
Communications has been reorganized and renamed the Office of 
Communications and Public Liaison (OCPL). The possible functions of all 
of the offices of public liaison (OPLs) were discussed with 23 public 
representatives who met with me on September 23, 1998, to discuss the 
issue of enhancing public participation in NIH activities. Core 
functions of the Institute-level OPLs discussed at this meeting 
include: conducting outreach to constituency groups and serving as a 
contact point for the public (especially with regard to policy matters) 
and place where Congress can refer its constituents. Several additional 
activities for the OPLs were suggested: educating the public about 
research, carrying out activities recommended by the new Council of 
Public Representatives (COPR) , and identifying public concerns and 
bringing them to the attention of the COPR. The OPL at the NIH level 
has some additional responsibilitiesit will staff the meetings and 
other activities of the COPR, work on an ongoing basis with the 
institute-level OPLs to help share ``best practices'' for enhancing 
public participation in NIH activities, evaluate NIH's performance on 
``outreach'' and public liaison activities, and, where appropriate, 
suggest additional activities. Each of the Institutes and Centers also 
has a communications office. In many cases, the new offices of public 
liaison have been combined with the standing communications offices. 
These communications offices have concentrated primarily on (1) health 
education programs to bring science-based health information to the 
public and (2) media relations to help mass media outlets convey the 
results of new research to the public accurately and in a timely 
fashion. These offices have also been involved in helping to recruit 
patients into clinical trials, responding to millions of public 
inquiries (primarily about disease problems), using the new electronic 
technology to reach certain audiences, devising strategies to reach 
specialized audiences (such as Spanish-speaking populations, 
individuals with low reading ability) with important health messages, 
and in some cases creating science education programs for students.
                         minorities and cancer
    Question. What progress has been made in delineating an overarching 
strategy to guide efforts in studying ethnic or socioeconomic 
differences in cancer rates across NIH?
    Answer. NCI acknowledges the need to expand and enrich our 
surveillance programs. Work is in progress to enhance our capacity to 
measure the national cancer burden and to speed our progress to reduce 
its impact on all Americans. This effort includes clarifying the basis 
of differences in cancer rates among people of various ethnicities and 
of varying socioeconomic strata. We are also studying differences in 
quality of cancer care among those groups and its impact on mortality. 
We have consulted a group of experts in surveillance to help us tackle 
these complex issues. The Surveillance Implementation Group has met 
several times over the past year, and we expect recommendations 
addressing these questions in the near future. We have also recently 
hired a demographer with expertise in health data for racial/ethnic 
populations to help direct surveillance efforts.
    The scope of the NCI surveillance enterprise includes a broad and 
complex range of data and data systems designed to measure the cancer 
burden. In addition to SEER's coverage of cancer incidence and survival 
for 14 percent of the U.S. population and significantly larger 
proportions of most racial/ethnic groups, the NCI utilizes and 
publishes reports based on National Center for Health Statistics (NCHS) 
data on cancer mortality for the entire U.S. population. Specially 
funded NCI surveys, cooperative group consortia, data linkages with 
national databases, and supplements to federal health surveys are 
mechanisms we use to provide information on cancer risk, health 
behavior and health status, patterns of care, cancer outcomes, cost and 
quality of cancer care, and quality of life. Every surveillance 
research and analysis project includes an emphasis on information for 
different populations. Selected examples are the 1998 SEER monograph on 
prostate cancer, which includes a special chapter devoted to racial/
ethnic patterns, as well as the ongoing longitudinal SEER Prostate 
Cancer Outcomes Study which oversampled black and Hispanic men.
    The NCI recognizes the need to better explain the disparities in 
the cancer burden in several high-risk ethnic minority and medically 
underserved populations and is emphasizing research which reflects 
diversity of the U.S. population. In 1975, 1979, 1983, and 1992, SEER 
expanded to include populations critical to explaining the burden of 
cancer in this country. These expansions have increased the coverage of 
Hispanics, urban blacks, and Asian and Pacific Islanders in Southern 
California and the South San Francisco Bay Area, rural African-
Americans in Georgia, northwestern populations in Seattle, Arizona 
Indians, and Alaska Native Americans. One of the recommendations of a 
group of experts convened by the NCI to review its entire cancer 
control effort (the Cancer Control Review Group) is that we expand 
coverage to capture additional key populations, such as rural low-
income whites, more diverse American Indian populations, rural African-
Americans, and additional Hispanic subgroups. Beyond the SEER Program, 
the Cancer Surveillance Research Program is planning a coordinated 
effort cofunded by other NIH agencies (such as the National Heart, 
Lung, and Blood Institute and the NCHS) to improve data collected on 
mortality by race/ethnicity.
    NCI-sponsored investigators are emphasizing studies of screening 
among traditionally underserved populations, and our Cancer 
Surveillance Research Program is addressing the measurement and 
monitoring of cancer rates based on SES indicators at the level of the 
individual and based on that person's neighborhood and community 
characteristics. The Cancer Research Network, the SEER-Medicare-linked 
database, and the Breast Cancer Surveillance Consortium are also being 
used to enhance our health services and economics research.
    Question. What adjustments have been made in the NCI budget to 
respond to the IOM report recommendation for increased funding of 
studies on cancer in ethic and medically underserved groups?
    Answer. We have not made adjustments in the NCI budget as yet, 
pending analysis of the IOM report and its recommendations by the 
Special Populations Working Group.
    Question. How will NCI respond to the IOM report recommendation to 
expand the number of ethnic minority investigators in cancer research 
and increase the representation of ethnically diverse researchers and 
public representatives serving on NCI advisory and program review 
committees?
    Answer. The NCI has recently established the Comprehensive Minority 
Biomedical Branch (CMBB) within the Office of Centers, Training, and 
Resources of NCI. This new unit focuses on a broad-based approach to 
dealing with every aspect of the ethnic minority cancer problem, with 
particular emphasis on the cancer incidence and mortality disparity 
between ethnic communities and the general population. Specific 
emphasis is given to increasing funding for research by minority 
scientists, the enrollment of minority physicians and patients into 
clinical trials programs, training and manpower development of minority 
students and faculty, and the building of extensive networks and 
partnerships between the federal funding community and academic 
research communities. Importantly, the CMBB has created a new training 
initiative, called the CURE Program (Continuing Umbrella of Research 
Experiences) for underserved minorities. This initiative begins by 
exposing promising minorities at the high school and undergraduate 
levels to cancer research and then provides a continuum of competitive 
opportunities through the successful established independent cancer 
investigator. An aggressive marketing plan for the CURE program has 
been developed which involves site visits, presentations at scientific 
meetings, a quarterly newsletter, flyers, buttons, and electronic media 
dissemination. A tracking system for CURE will be in place to evaluate 
the success of this program.
    In addition to the CMBB and its CURE program, NCI is promoting the 
entry of ethnic minority investigators into the research community 
through its new initiative, the Special Populations Network. A major 
goal of the Special Populations Network is the promotion of training 
opportunities, including mini-sabbaticals for minority students/
scientists, and enhancing awareness and utilization of training 
opportunities. To enhance training opportunities for minority 
scientists, awardees will identify junior minority researchers and 
students participating in the network and facilitate their pursuit of 
further training assignments in cancer control and related areas. 
Awardees will also arrange short-term training assignments for minority 
researchers in cancer prevention and control in the programs of the NCI 
and at NCI-funded cancer centers. Awardees are expected to demonstrate 
that they are taking advantage of training opportunities offered by NCI 
(e.g., the CURE Program or other grant mechanisms) or by other 
appropriate organizations. Awareness of NCI training opportunities will 
be enhanced by establishment of informational links with the CMBB. 
Utilization rates of NCI training opportunities will be tracked 
annually with the assistance of the CMBB.
                           nih accountability
    Question. What plans do you have for responding to the IOM 
recommendation that NIH set up a regular reporting mechanism to 
increase NIH accountability to the U.S. Congress and public 
constituencies?
    Answer. As a steward of public funds, the NIH fully recognizes its 
accountability to the American public. While there have always been 
formal and informal interactions with all of the publics that are 
involved with, or affected by, NIH's research and activities, this has 
been variable and is being more systematically addressed through a 
variety of mechanisms. These include ongoing efforts to solicit the 
views of many individuals and groups, including the extramural 
scientific community, patient advocacy groups, Congress, the 
Administration, and NIH staff. For example, each Institute and Center 
(IC) convenes meetings of national advisory councils or boards, with 
members from the public, medical, and scientific communities, to review 
a broad range of IC policies, and many conferences and workshops are 
organized each year to gather opinions on specific scientific, health, 
ethical, and administrative issues.
    To broaden the interactions among the public, medical and 
scientific communities, patient advocacy groups, and others, the NIH 
Office of the Director and Institutes and Centers have undertaken 
several steps to provide the public with more opportunities to present 
their views and receive information about NIH research activities. An 
Office of Public Liaison has been established in the Office of the 
Director and in each Institute and Center. These offices are points of 
contact for interested parties to reach NIH to address their concerns 
and questions about research that NIH conducts. A Director's Council of 
Public Representatives has also been established and will serve as an 
important conduit of information from and to the public about NIH 
programs.
    Input from the public on research goals will also be gathered 
through the development of strategic plans by each NIH Institute and 
Center. These plans will articulate each Institute and Center's 
overarching vision or mission, establish research priorities, delineate 
their planning processes, and describe existing scientific 
opportunities and their initiatives/plans for capitalizing on them. 
This is the kind of strategic planning that takes place at the NIH and 
is being expanded. The NIH Director has requested that each IC develop 
a 2-5 year strategic planwith input from a wide range of NIH 
constituents, including patient and other health advocates, scientists, 
health care providers, Congress, the Administration, NIH staff, and 
other representatives of the public.
    In addition, the NIH Director will involve his Advisory Committee 
and the new Council of Public Representatives in assessments of NIH's 
research program under the Government Performance and Results Act and 
in discussions of the public policy, e.g., privacy of research records. 
The ACD membership has also been expanded by three, and these vacancies 
will be filled by additional public members.
                            prostate cancer
    Question. To what extent have the recommendations of the Prostate 
Cancer Progress Review Group been incorporated into the NIH and NCI 
research agenda for fiscal year 1999 and planning for fiscal year 2000?
    Answer. The NCI's Prostate Cancer Progress Review Group (PRG) 
submitted its final report, containing a comprehensive, prioritized 
list of research priorities, in August 1998. The report, entitled 
``Defeating Prostate Cancer: Crucial Directions for Research,'' can be 
found on line at http://www.nci.nih.gov (click on ``What's New''). The 
PRG's report was eminently successful in providing us a clear, 
thoughtful vision of where we want to be and how we want to get there, 
and we were able to enthusiastically respond to and address many of the 
PRG's recommendations. NCI is using the report as a blueprint detailing 
what the Institute needs to prioritize and fund in order to answer key 
scientific questions. At this time, NCI is putting into place the 
mechanisms that will allow them to respond to--and implement, as 
appropriate--the PRGs' recommendations. For example, NCI funding for 
prostate cancer research will increase around 50 percent during fiscal 
year 1999, to a total level of about $130 million. NCI is currently 
planning to fund over twenty initiatives that are related to the 
prostate PRG that will allow them to direct funds and to make sure that 
there are opportunities to address these issues for what is expected to 
be a rapidly growing prostate cancer research community.
    Descriptions of some of the new and ongoing initiatives that will 
enable NCI to address, or begin to address, the PRG's recommendations 
can be found at http://www.nci.nih.gov/prostate.html. Some highlights 
of efforts found in this document which are expected to be fully 
implemented in fiscal year 1999 include:
    Director's Challenge For Molecular Diagnostics.--The NCI Director 
has challenged the research community to revolutionize our 
classification of human tumors. Although detection technologies have 
advanced to the point where we can identify tumors at earlier stages, 
we currently do not have the ability to classify those tumors based on 
tumor behavior, prognosis, and sensitivity to treatment. Nowhere is the 
need for improved classification greater than in prostate cancer. 
Despite the prevalence of apparently malignant change in the prostates 
of asymptomatic men, these abnormalities do not always represent 
aggressive, potentially deadly cancers; we are currently unable to 
predict which patients should be treated aggressively and which do not 
require radical treatment. The Director's Challenge will enable us to 
combine technological advances in molecular detection with rapidly 
advancing knowledge of tumor biology in a manner that will provide more 
sophisticated classification of cancer based on molecular criteria.
    Early Detection Research Network.--The NCI intends to establish a 
multi-institutional consortium to develop sensitive and specific tests 
for the early detection of cancer. This Network will link centers of 
expertise in tumor biology, diagnostics technologies, and clinical-
trials methodology in academia and industry to develop high-throughput 
assays suitable for clinical testing. The Network will have the 
capacity to establish estimates of the operating characteristics of 
candidate assays as early-detection tools. NCI intends prostate cancer 
to be one focus of activity within the new Network; the current 
interest in the prostate-specific antigen (PSA) demonstrates the 
feasibility of this approach. To expedite the discovery and development 
of more sensitive and specific markers for early disease, NCI will also 
establish links between activities of the Network and programs in 
academia and industry that are developing libraries of all known 
secreted proteins in mammalian cells.
    Prostate Cancer Tissue Bank.--Successful development of molecular 
diagnostics depends on availability of tumor tissue specimens. NCI 
plans to develop a national prostate cancer tissue resource, possibly 
modeled after its successful Cooperative Breast Cancer Tissue Resource. 
NCI is also considering a pilot project to test the feasibility of 
prospective collection and storage of frozen specimens. In addition to 
tumor specimens, this resource will contain clinical outcome 
information to allow correlation between molecular test results and 
outcome. The design of this registry will provide robust protection of 
patient confidentiality.
    The research agenda at the NIH level has been positively impacted 
by the PRG recommendations. A trans-institute initiative was recently 
released between the National Cancer Institute (NCI), the National 
Institute of Digestive and Diabetes and Kidney Diseases (NIDDK) and the 
National Institute of Aging (NIA). This initiative is in direct 
response to a strong call by the PRG to increase our fundamental 
understanding of the normal biology of the prostate which is considered 
a real hindrance to progress.
    In short, NCI has taken the recommendations of the Prostate Cancer 
Progress Review Group very seriously. They have begun implementing a 
number of the recommendations, and it is expected that the report will 
be a guiding force in our scientific prioritization and planning in 
fiscal year 1999 and for several years into the future.
    Question. What are the ``key gaps in the research agenda'' and 
``major new opportunities'' identified by the Prostate Cancer Progress 
review Group and how have NIH and NCI addressed these findings in the 
plans for research in the coming months and years?
    Answer. The National Cancer Institute convened a Prostate Cancer 
Progress Review Group (PRG) to assess the current research portfolio 
and identify gaps in our knowledge of prostate cancer that must be 
filled if we are to conquer this devastating disease. These gaps range 
from understanding the basic biology of the prostate and prostate 
cancer to assessing risk factors to developing treatment methods 1 and 
improving quality of life for men with prostate cancer. The deficits in 
our knowledge are large. At the same time, we recognize that inherent 
within each ``gap'' is an opportunity--an opportunity for discovery, an 
opportunity for increased knowledge, an opportunity to build on what we 
already know to take crucial steps forward in defeating prostate 
cancer.
    Although increased support in all areas of prostate cancer research 
is important, the Prostate PRG identified several areas in which 
increased support is particularly crucial. These include:
    Biology of the Normal Prostate.--We still know very little about 
the development and biology of the normal prostate; such knowledge will 
enable us to better understand the changes that can lead to prostate 
cancer. Responsive NCI Activity: The NCI, the National Institute for 
Diabetes and Digestive and Kidney Disorders (NIDDK) and the National 
Institute of Aging are publishing a joint Program Announcement seeking 
research on the biology of the normal prostate.
    Availability and Validation of Animal Models.--Laboratory and 
clinical models are critical for defining the mechanisms of prostate 
cancer progression and for testing preventive and therapeutic regimens. 
Yet only a few such models have been developed, all of which are 
encumbered by insufficient biological knowledge of the human cancer 
they aim to simulate. A better understanding of the basic biology of 
human prostate cancer will accelerate and refine the process of model 
development. In response, NCI has initiated a new Animal Models 
Consortium, within which researchers will create models for the 
development of normal tissue, early cancer, and metastatic cancer. We 
have begun soliciting proposals from potential participants; the 
response has been heartening and exciting. We fully expect to receive a 
number of applications relevant to prostate cancer; if we do not, we 
may reach out with additional funding to ensure that the Prostate PRG's 
recommendations are met.
    Tissue Banks.--Successful research, in many cases, depends on 
availability of tumor tissue specimens, but such specimens are all too 
frequently unavailable to the research community. NCI plans to develop 
a national prostate cancer tissue resource, possibly modeled after its 
successful Cooperative Breast Cancer Tissue Resource. We are also 
considering a pilot project to test the feasibility of prospective 
collection and storage of frozen specimens. In addition to tumor 
specimens, this resource will contain clinical outcome information to 
allow correlation between molecular test results and outcome. The 
design of this registry will provide robust protection of patient 
confidentiality.
    Validation of Biomarkers for Early Detection, Diagnosis, and 
Prevention of Cancer.--Despite the prevalence of apparently malignant 
change in the prostates of asymptomatic men, these abnormalities do not 
always represent aggressive, potentially deadly cancers; we are 
currently unable to predict which patients should be treated 
aggressively and which do not require radical treatment. The 
identification and validation of biomarkers that can help us predict 
with accuracy the behavior of a given tumor at the molecular level will 
help us address this issue. In response to this need, NCI is 
establishing a multi-institutional consortium, the Early Detection 
Research Network, to develop sensitive and specific tests for the early 
detection of cancer. This Network will link centers of expertise in 
tumor biology, diagnostics technologies, and clinical trials 
methodology in academia and industry to develop high-throughput assays 
suitable for clinical testing. The Network will have the capacity to 
establish estimates of the operating characteristics of candidate 
assays as early-detection tools. NCI intends prostate cancer to be one 
focus of activity within the new Network; the current interest in the 
prostate-specific antigen (PSA) demonstrates the feasibility of this 
approach. To expedite the discovery and development of more sensitive 
and specific markers for early disease, NCI will also establish links 
between activities of the Network and programs in academia and industry 
that are developing libraries of all known secreted proteins in 
mammalian cells.
    Training in Prostate Cancer Research for Investigators Across the 
Span of Their Careers.--The PRG placed a very high priority on 
increasing training opportunities in prostate cancer. NCI has developed 
several new mechanisms to support training overall. The Mentored 
Clinical Scientist Development Program Award (K12) provides funding 
between the time an investigator leaves the mentored environment and 
award of his or her first grant, and the Midcareer Investigator Award 
in Patient-Oriented Research (K23, K24) provides protected time for 
clinical and population-based research. Another award (K01) allows 
longtime investigators to ``change directions'' at midcareer and try a 
new area of science.
    Clearly, the recommendations of the Prostate Cancer PRG form an 
integral part of our scientific prioritization and planning over the 
next several years. Although gaps in our understanding of prostate 
cancer exist, it is certain that by bridging these gaps, we will make 
real and tangible progress against prostate cancer.
    A full enumeration of the gaps and opportunities facing the NCI in 
the area of prostate cancer research can be found in the PRG's final 
report, ``Defeating Prostate Cancer: Crucial Directions for Research.'' 
This report can be found at http://www.nci.nih.gov (click on ``What's 
New''). In addition, we are currently putting into place the mechanisms 
that will allow us to respond to--and implement, as appropriate--the 
PRGs' recommendations. Descriptions of some of our new and ongoing 
initiatives that will enable us to address, or begin to address, these 
recommendations can be found at http://www.nci.nih.gov/prostate.html.
                          parkinson's disease
    Question. What is the status of the Parkinson's disease research 
program throughout NIH?
    Answer. NIH supports a vigorous and expanding program of research 
in Parkinson's disease, and has taken significant steps to implement 
the Morris K. Udall Parkinson's Disease Research Act. This is a time of 
growing enthusiasm, new directions, and new initiatives for Parkinson's 
disease research, so that the initiation of activities contained in the 
legislation is extremely timely. Research activity conducted and 
supported by the NIH in this area is leading to the reporting of new 
and intriguing findings.
    The NIH is committed to establishing up to ten Research Centers of 
Excellence to expand and carry forward recent advances in Parkinson's 
disease research. The National Institute of Neurological Disorders and 
Stroke (NINDS), the lead NIH Institute for Parkinson's disease, has 
issued two Requests for Applications (RFA) for these Centers. NIH is 
making special efforts to attract new investigators--many from other 
fields of research--to stimulate research on Parkinson's disease.
    Discussions have begun between NINDS staff and other organizations, 
including Parkinson's disease voluntary groups, to consider relevant 
studies that would be effective in providing Parkinson's disease data 
while protecting patient and family privacy. Discussions also have been 
initiated with the National Institute on Aging and the Department of 
Veterans Affairs to determine the viability of collaborative efforts to 
establish a Parkinson's disease data system. This year, NINDS has 
initiated the first phase of a national education program for 
Parkinson's disease. Its purpose is to develop and communicate 
important public health messages which will enhance knowledge and 
understanding of Parkinson's disease. NINDS is also planning to 
establish an information clearinghouse on Parkinson's disease and 
stroke.
    Coordination among the NIH institutes is essential to build on 
recent advances and minimize duplication of research effort. Many 
scientific disciplines and clinical approaches can usefully be brought 
to bear on Parkinson's disease. To address these issues, other 
Institutes and Centers (ICs) of the NIH have made Parkinson's disease a 
focus of research interest. These include: the National Institute on 
Aging, the National Institute of Mental Health, the National Institute 
of Environmental Health Sciences, the National Human Genome Research 
Institute, the National Institute on Drug Abuse, the National Institute 
of Diabetes and Digestive and Kidney Diseases, and the National Center 
for Research Resources. In the coming year, NIH will enhance the 
coordination among interested components, building on the successful 
operation of the Parkinson's Disease Coordinating Committee. The 
Committee, led by NINDS, includes representation from the Aging, Mental 
Health, and Environmental Health Institutes.
    Question. What is the status of the Morris K. Udall research 
centers and awards programs?
    Answer. The NIH is committed to establishing up to ten Research 
Centers of Excellence to expand and carry forward recent advances in 
Parkinson's disease research. The National Institute of Neurological 
Disorders and Stroke (NINDS) issued two Requests for Applications (RFA) 
for these Centers. We were encouraged by responses received from many 
of the major medical centers in the country. Three Centers received 
superior scores in review from the first RFA, and were selected for 
immediate funding in fiscal year 1998. In response to recent research 
progress and opportunity, and in an effort to intensify and expand 
basic and clinical research in Parkinson's disease, an updated RFA has 
been issued, with the intent of supporting up to five more Centers in 
fiscal year 1999. We will evaluate opportunities for further expansion 
in fiscal year 2000.
    While each Center's individual projects will focus on specific 
aspects of Parkinson's disease research, the goal is to establish a 
comprehensive program addressing the major research issues. Clinical 
studies may focus on specific therapies such as surgical ablation and 
deep brain stimulation, cell implantation, gene therapy, and novel 
pharmacological approaches. Identification of families with high 
incidence of Parkinson's will facilitate further genetic studies. 
Applicants for Center funding are encouraged to propose a full range of 
studies of normal and diseased brain function relevant to the 
pathogenesis and course of Parkinson's disease. Finally, development or 
refinement of resources such as improved imaging technology and animal 
models will be supported through this mechanism. The Centers will 
foster an environment that promotes interaction among investigators in 
a multidisciplinary setting, leading to a better understanding of 
Parkinson's disease as well as improved diagnosis and treatment. The 
currently funded Centers are conducting research on several of these 
objectives: one includes research projects on deep brain stimulation 
and the development of an animal model; another is focusing on proteins 
implicated in Parkinson's disease and animal models; and the third is 
concentrating on the roles that the genes for three proteins associated 
with Parkinson's disease play in the death of nerve cells.
    Question. How many genes related to Parkinson's have been 
identified to date? What are the implications for improved treatments 
of this condition?
    Answer. With NIH support two new genes have been identified that 
provide clues to the pathogenesis and mechanisms of Parkinson's disease 
(PD). A collaboration sponsored by NINDS and the National Human Genome 
Research Institute (NHGRI) for the first time showed that a single gene 
alteration on chromosome 4 could cause PD. Although of unknown 
functions, the protein (alpha-synuclein) encoded by this gene had been 
identified previously in several different contexts: as a protein found 
at synapses, the site of information exchange between nerve cells; as a 
protein linked to memory and learning; and, most intriguingly, as a 
protein whose fragments are found in the deposits of aggregated protein 
``amyloid plaques'' characteristic of Alzheimer's disease. In a follow 
up study, scientists demonstrated that synuclein is also located in 
structures known as Lewy bodies, found in the most common, non-
inherited form of PD, and in certain other neurological diseases. This 
finding supports the idea that inherited PD may provide insights about 
the more common forms of the disease. The finding also complements a 
growing body of evidence that abnormal aggregations of proteins, such 
as those found in Lewy bodies of PD, amyloid plaques of Alzheimer's, 
and the ``nuclear inclusions'' in Huntington's disease, are not just 
disease markers but actively harmful in damaging the brain. Stopping or 
slowing the formation of these aggregations may present an entirely new 
approach to preventing the death of brain cells in neurodegenerative 
diseases. NINDS and NIA are actively supporting research in this area.
    A new genetic mutation located on chromosome 2 has been discovered 
in a group of German families with a predispositon to Parkinson's 
disease. Under NINDS and NHGRI sponsorship, scientists are now 
attempting to find other defective genes that may contribute to PD in 
other families.
    Question. How close are you to discovering the role, if any, that 
environmental agents play in causing Parkinson's disease?
    Answer. There are many theories about the cause(s) of Parkinson's 
disease. Until recent years, the prevailing theory held that one or 
more environmental factors caused the disease. Severe Parkinson's-like 
symptoms were described in people who took an illegal drug contaminated 
with the chemical MPTP (1-methyl-4-phenyl-1,2,3,6-tetrahydropyridine) 
and in people who contracted a particularly severe form of influenza 
during an epidemic in the early 1900s. Other environmental 
associations, such as exposure to pesticides, have also been observed 
but not conclusively proven. In NIH- sponsored studies, scientists have 
identified the specific genetic abnormalities that cause some forms of 
Parkinson's in unrelated families. The strong familial inheritance of 
the chromosome 4 gene is the first evidence that a gene alteration 
alone may lead to Parkinson's disease in some people. It also opens up 
exciting new approaches to studying the mechanisms of Parkinson's 
disease.
    In collaboration with the Department of Veterans Affairs and the 
Parkinson's Institute, the National Institute of Neurological Disorders 
and Stroke sponsored a study of World War II veteran twins. Recently 
released conclusions of the study indicate that genetic factors play a 
major role in Parkinson's disease when the disease begins before the 
age of 50, but are not significantly important when the disease begins 
after age 50 years. The significant agents or conditions responsible 
for causing Parkinson's disease in persons over 50 are currently 
unknown. Despite many studies investigating the possible role of 
environmental factors in causing Parkinson's disease, none have been 
confirmed.
    Question. Do you anticipate that better and longer acting drugs 
will be developed any time soon?
    Answer. At present, most people with Parkinson's disease receive 
drugs designed to replace or mimic dopamine in the brain. Standard 
therapy for Parkinson's disease consists primarily of administering the 
drug levodopa, a substance converted to dopamine by the brain, that 
often is combined with other agents to enhance its effect. In the early 
stages of Parkinson's disease, physicians often begin treatment with 
one or a combination of the less powerful drugs--such as the 
anticholinergics or amantadine. Bromocriptine, pramipexole, pergolide, 
and ropinerole are drugs that mimic the role of dopamine in the brain, 
causing the neurons to react as they would to dopamine. They can be 
given alone or with levodopa and may be used in the early stages of the 
disease or started later to lengthen the duration of response to 
levodopa in patients experiencing wearing off or on-off effects. 
Selegiline, also known as deprenyl, has become a commonly used drug for 
Parkinson's disease. Studies supported by the NINDS have shown that the 
drug delays the need for levodopa therapy by up to a year or more. When 
selegiline is given with levodopa, it appears to enhance and prolong 
the response to levodopa and thus may reduce wearing-off fluctuations. 
Several therapeutic strategies which strengthen the benefit achieved 
with levodopa are being developed. Talcapone is one such drug that is 
approved by the Food and Drug Administration for clinical use. A 
similarly acting compound with fewer side effects, entacapone, is 
presently under review by the FDA. Many other drugs employing similar 
mechanisms of action are under development. None of the currently 
available drugs stops the underlying degeneration associated with 
Parkinson's. The effects of drug therapy often wear off over time, and 
they have unpleasant side effects. Researchers are now experimenting 
with a number of advanced surgical and non-surgical approaches to 
treating Parkinson's, and hope that these new therapies will help 
patients who do not benefit from current drugs, perhaps even slowing 
the course of the disease. The surgeries, pallidotomy, thalamotomy, 
especially appear to significantly benefit some patients. NINDS is 
supporting both intramural and extramural studies evaluating what 
appear to be the extremely beneficial results of the surgical 
implantation of deep brain stimulators, a procedure that is reversible. 
The stimulators have been approved for use by the FDA.
                           stem cell research
    Question. Do you expect a court challenge to your decision to fund 
this research?
    Answer. We do not expect litigation and hope that the openness of 
the process we will propose in anticipation of funding research 
utilizing human pluripotent stem cells offers the opportunity to fully 
engage all those interested in this work.
    Question. What is the status of your efforts to develop guidelines 
and form an administrative oversight group to determine how NIH will 
fund stem cell research?
    Answer. The NIH understands and respects the compelling ethical, 
legal, and moral issues surrounding pluripotent stem cell research and 
is sensitive to the need for stringent oversight of this research that 
goes beyond the traditional rigorous NIH scientific peer review 
process. In light of these issues, the NIH plans to move forward in a 
careful way prior to funding any research utilizing pluripotent stem 
cells.
    NIH has convened a working group of the Advisory Committee to the 
Director (ACD) to develop guidelines that specify what work using these 
cells can and cannot be supported with DHHS funds and outline 
restrictions on the derivation of the cells. The Working Group has been 
asked to propose an oversight mechanism to review research proposals 
seeking to conduct research utilizing these pluripotent stem cells. The 
Working Group, composed of scientists, the lay public, ethicists, 
lawyers and clinicians met on April 8, 1999 in public session. Once the 
Working Group has finalized draft guidelines for research using human 
pluripotent stem cells, this draft will be published in the Federal 
Register for public comment for a period of sixty days. The NIH will 
not be funding any research using pluripotent stem cells until 
guidelines are developed and widely disseminated to the research 
community and an oversight process is in place.
    Question. When do you expect to have this process completed?
    Answer. We hope the guidelines and oversight process will be 
operational within the next several months.
    Question.
     In addition to consulting with Congress while developing these 
guidelines, who else do you plan to consult?
    Answer. The process that we have planned to ensure that any 
research involving human pluripotent stem cells is appropriately and 
carefully conducted will take into consideration a broad range of 
views. The working group of the Advisory Committee to the Director 
(ACD) to develop guidelines has been asked to consider advice from the 
National Bioethics Advisory Commission (NBAC), the public, and the 
Congress.
    Question. Do you intend to publish a Request for Applications (RFA) 
to stimulate additional research using stem cells?
    Answer. It is not clear that we will need to publish an RFA to 
stimulate additional research, at least initially. Our first step has 
been to convene a Working Group of the Advisory Committee to the 
Director, to develop guidelines for researchers and to develop an 
oversight mechanism to review proposals seeking to conduct research 
utilizing pluripotent stem cells. Draft guidelines will be published in 
the Federal Register for sixty days for public comment, and 
applications will be accepted after the guidelines have been finalized 
and disseminated to the research community. We expect that the research 
community will be prepared to submit applications through our regular 
receipt and review process. However, we also intend to advertise to the 
research community the availability of supplements to ongoing research, 
for additional studies on pluripotent stem cells. Such supplements 
would, of course, be subject to our oversight process.
    Question. Will the NIH guidelines for stem cell research apply to 
any activities performed in IVF clinics?
    Answer. The NIH guidelines for pluripotent stem cell research will 
apply to research utilizing human pluripotent stem cells. The 
guidelines will include restrictions on how the cells used in research 
are derived. If that work occurs in an IVF clinic, the guidelines will 
apply.
                          parkinson's disease
    Question. An estimated one million Americans are afflicted with 
Parkinson's disease. Although there have been major scientific 
breakthroughs in the past few years, Parkinson's disease continues to 
exact a costly toll on the United States, both in human and fiscal 
terms.
    In its fiscal year 1999 report, this subcommittee directed NIH to 
provide a level of funding for Parkinson's-focused on Parkinson's 
disease where the principle focus of the research is the cause, 
pathogenesis, and/or potential therapies or treatment of Parkinson's 
disease, that is consistent with the $100 million Congressional 
directive in the Morris K. Udall Parkinson's Disease Research Act and 
the fiscal year 1999 Omnibus Bill. This Subcommittee also directed NIH 
to report back to Congress (120 days after the passage of the fiscal 
year 1999 Omnibus Appropriations Act) on progress made toward 
increasing the level of Parkinson's focused research consistent with 
the Udall Act.
    What steps are you taking to ensure the $100 million will be spent 
on Parkinson's focused research as directed by the Morris K. Udall 
Parkinson's Disease Research Act of 1997 and the fiscal year 1999 
Omnibus appropriations bill?
    Answer. NIH supports a vigorous and expanding program of research 
in Parkinson's disease, and has taken significant steps to implement 
the Morris K. Udall Parkinson's Disease Research Act, including its 
funding goals. New research efforts are augmenting the wide range of 
basic laboratory studies and clinical trials on Parkinson's disease 
already being conducted intramurally and at grantee institutions. The 
issuance of new Requests for Applications and Program Announcements to 
the research community to encourage several different approaches to the 
investigation of Parkinson's disease, and the formation of the 
Parkinson's Disease Coordinating Committee to plan and develop new 
avenues of research, have already begun to stimulate more new ideas and 
approaches. Nothing is a higher priority for the lead institute, NINDS, 
than the identification of causes and movement toward a cure for 
Parkinson's disease. Estimated total NIH funding for Parkinson's 
disease research in fiscal year 1998 was $109.7 million, and is 
estimated to be $127.7 million for fiscal year 1999. This reflects a 
steady growth in funding over the past five years. As avenues of 
research continue to be revealed, NIH will assess its Parkinson's 
disease research portfolio to determine whether additional initiatives 
are needed.
    Question. Where is the report requested by the Subcommittee?
    Answer. The National Institute of Neurological Disorders and 
Stroke, lead NIH Institute for Parkinson's disease, prepared the report 
in response to the request of the Senate Committee on Appropriations. 
The final report was forwarded to the Committee on March 15th.
    Question. The Morris K. Udall Parkinson's Disease Research Act also 
directs NIH to sponsor a planning conference on Parkinson's-focused 
research every two years. What steps have been taken to organize and 
design a planning conference on Parkinson's-focused research at NIH?
    Answer. Continuing the work and focus of the successful Parkinson's 
Disease Research Planning Workshop sponsored by NINDS, the National 
Institute on Aging, the National Institute of Environmental Health 
Sciences, and the National Institute of Mental Health in 1995, the 
NINDS and other Institutes concerned with Parkinson's have sponsored 
additional meetings:
    NINDS and the National Human Genome Research sponsored a second 
workshop on the genetics of Parkinson's disease in December, 1997 at 
Cold Spring Harbor that has continued to spark research interest. 
Encouraged by the workshop, additional work is being focused on 
understanding the products and processes that are affected by the genes 
involved in familial, and perhaps other, forms of Parkinson's disease.
    In April, 1998, NINDS, together with the Office of Rare Diseases, 
NIH, sponsored a conference to arrive at consensus focusing on multiple 
system atrophy (MSA). MSA is a neurodegenerative disorder characterized 
by parkinsonism, cerebellar dysfunction, and autonomic insufficiency. 
Parkinson's disease is misdiagnosed as MSA in 10-20 percent of cases.
    A series of other significant PD research planning workshops on 
medical and surgical therapies and pathogenesis is planned to begin in 
the next year.
            clinical center: minorities in clinical research
    Question. This committee recently held a hearing focused on 
concerns regarding inclusion of minority populations in clinical 
research. Does the Clinical Center have patient programs that focus on 
special problems of minority communities?
    Answer. The NIH Clinical Center's Patient Recruitment and Public 
Liaison Office (PRPL), a multi-cultural and bilingual staff, conducts 
outreach to minority communities and facilitates patient referrals. 
Outreach to minorities is accomplished through exhibits at regional and 
national conferences, presentations to community and professional 
organizations, and the media.
    Print and audio-visual materials used for outreach activities are 
developed in both English and Spanish. The PRPL operates a phone center 
with a toll-free number (1-800-411-1222) where prospective patients 
receive information about research studies.
    In January, 1998, the Clinical Center initiated activities to 
assist with patient recruitment, by targeting women and minorities who 
are under-represented in the patient population. The PRPL convened a 
Community Leadership Council, comprised of leaders from a cross-section 
of the minority community, to act as liaisons to the larger minority 
community and forge long term relationships.
    The Clinical Center continuously looks for opportunities to 
encourage minority populations to participate in clinical trials. For 
example, child care is an issue for mothers participating in clinical 
studies. Recently, the Clinical Center established a pilot drop off 
service to provide child care during outpatient visits to the Clinical 
Center. This service will help patients who are unable to secure child 
care keep clinic appointments.
    The Clinical Center has noted an increasing percentage of patients 
who do not have primary care physicians, particularly patients from 
disadvantaged backgrounds. Past NIH policy required all patient 
referrals to come from private physicians. In response to a declining 
number of patients who have private physicians, the Clinical Center 
changed its referral policy in 1998 to permit self referrals. This 
policy change will permit greater access to the Clinical Center to 
those who have no primary care physician.
    Other examples of the Patient Recruitment and Public Liaison Office 
outreach activities include greater use of conference exhibits. Staff 
attending conferences distribute materials and answer questions 
regarding clinical research and the need for patient representation in 
the development of new treatments in the pursuit of medical 
breakthroughs. Clinical Center staff network to increase awareness 
among participants and exhibitors by discussing the Clinical Center--
its mission, the patient referral process, and information on clinical 
services. This past year exhibits were held at the National Hispanic 
Medical Association National Convention; the National Council of La 
Raza National Convention; the Nuestra Gente Annual Conference; the 
Society for the Advancement of Chicanos and Native Americans in 
Science; the National Association of American Indian Physicians; and, 
the National Medical Association.
    In addition, staff presented workshops and information regarding 
participation in clinical trials at the Clinical Center to the National 
Puerto Rican Coalition National Meeting; the National Coalition of 
Hispanic Health and Human Services Organizations National Conference; 
the National Hispanic Medical Association--Board of Directors; and, the 
National Medical Association.
    The Clinical Center has also utilized the media for outreach 
activities to the public about protocols available for enrollment, 
including the Hispanic Radio Network; ``Hablemos de Salud'' in the D.C. 
Metro area; Pro Salud Magazine; a Public Service Announcement recorded 
for the Hermansky-Pudlak Syndrome (HPS) Protocol; ``La Mexcicana'' 
Chicago radio station; and, ``Linea Abierta''.
    Question. How many patients have been entered into such protocols?
    Answer. All patients seen at the NIH Warren G. Magnuson Clinical 
Center participate in protocols. In fiscal year 1998, 2,869 minority 
patients were seen.
    Question. What has the census been of minority populations in the 
past year at the Clinical Center?
    Answer. The number for minority patients seen at the Warren G. 
Magnuson Clinical Center in 1998 are provided below. Any patient who 
was seen for an outpatient visit or who had at least one inpatient day 
is included.

------------------------------------------------------------------------
                                           Female      Male      Total
------------------------------------------------------------------------
American Indian/Alaskan Native.........         21         22         43
Asian/Pacific Islander.................        275        253        528
Black (not of Hispanic origin).........        966        775      1,741
Hispanic...............................        306        251        557
White (not of Hispanic origin).........      6,541      6,981     13,522
Unknown................................        106        111        217
                                        --------------------------------
      Total............................      9,783      9,694     19,477
                                        ================================
      Total Minority...................      1,568      1,301      2,869
------------------------------------------------------------------------

                                lymphoma
    Question. Lymphoma malignancies strikes upwards of 85,000 Americans 
each year with a 50-percent mortality rate. Hodgkin's and non-Hodgkin's 
lymphoma are the second highest cancer rate by incidence. We are 
currently making strides in the fight against cancer but the rate of 
incidence of lymphoma is actually increasing. In light of this trend 
what steps are the NCI taking in conjunction with the Centers for 
Disease Control and Prevention and the National Institute on 
Environmental Health Sciences to expand and coordinate efforts on 
lymphoma?
    Answer. The incidence of non-Hodgkin's lymphoma (NHL) has risen 
each decade since the 1950s. The National Cancer Institute's (NCI) SEER 
(Surveillance, Epidemiology, and End Results) registry data show an 
annual percentage increase of 3.2 percent in NHL incidence between 1973 
and 1995. Between 1991 and 1995, the rates increased at just over one 
percent per year. The current incidence rate for NHL is 15.4 per 
100,000; the mortality rate is 6.6 per 100,000, with a 5-year survival 
rates of 51 percent. The American Cancer Society estimates that 64,000 
new cases, and 27,000 deaths, from all lymphomas (Hodgkin's Disease and 
non-Hodgkin's lymphoma) will occur during 1999. The rate of increase of 
NHL incidence is the second highest among cancer increases, but the 
incidence rate itself ranks lower than several other cancers. It is 
nonetheless an important cause of death and disability and its patterns 
of occurrence warrant the high level of scientific attention devoted to 
understanding its causes.
    NCI is working with the Centers for Disease Control and Prevention 
(CDC) and the National Institute on Environmental Health Sciences 
(NIEHS) on several major projects designed to understand whether 
environmental exposures influence lymphoma risk and, if so, whether 
these exposures have contributed to the long-term, world-wide rise in 
lymphoma cases and deaths. For example, the NCI and the CDC 
collaborated on an important recent study of the role of 
organochlorines in the risk of lymphoma. The study found no link 
between lymphoma risk and DDT, a moderate association with lindane, and 
an unexpected association with polychlorinated bi-phenyls (PCBs).
    The critical laboratory assays of compounds present in the blood 
are conducted by investigators in CDC's specialized laboratory 
facility. As the NCI research effort grows, NCI and CDC investigators 
are exploring ways to expand the capabilities of that specialized 
laboratory to meet our needs for biological measures of past exposures. 
Similarly, NCI and NIEHS investigators are working together to expand 
the techniques available for measuring environmental exposures in 
population studies.
    Intramural scientists are conducting very large epidemiologic 
studies addressing the issue of the environment and lymphoma from a 
different vantage point, in the hopes that together they will yield 
substantially better understanding. In the Multi-Center NHL Case-
Control Study NCI investigators, in collaboration with CDC, are 
examining environmental exposures to pesticides and other compounds by 
comparing data from personal interviews, blood specimens, household 
dust, and drinking water in 1200 non-Hodgkin's lymphoma patients and 
1200 comparison subjects. A limitation of this case-control approach is 
that blood measures must be taken after lymphoma has arisen. The 
Agricultural Health Study (AHS) overcomes the limitation of the case-
control approach by studying 90,000 healthy farmers and their family 
members in Iowa and North Carolina and following them to measure the 
risks of developing lymphoma. NCI and NIEHS launched the AHS in 1993 as 
a result of previous NCI research implicating occupational exposures to 
pesticides in lymphoma; the study will assess the risks of other 
cancers and diseases. The AIDS-Cancer Cohort recently began following 
men infected with HIV to examine how environmental exposures interact 
with the virus to influence which individuals develop lymphoma; this 
information may be of value beyond the setting of HIV as it may yield 
more fundamental biologic understanding of the interplay of viruses and 
chemicals in the development of lymphoma. NCI investigators are 
conducting or have recently completed investigations of lymphoma 
trends, of the histologic types of lymphoma that are on the rise, of 
illnesses including other cancers associated with lymphoma, of 
occupational groups that may be at increased risk, and of the role of 
genetic susceptibility.
    NCI-supported extramural research covers a similarly wide range of 
approaches. Examples of lymphoma research in human populations include 
studies of Hodgkin's disease in children and adults in relation to 
Epstein-Barr virus and HIV in conjunction with non-infectious 
environmental factors such as hair coloring, pesticides, nitrates, and 
solvents; molecular studies of immune changes in HIV-related lymphomas; 
research measuring genetic changes in tumor cells; population studies 
of NHL to evaluate the influence of childhood infections, autoimmune 
disease and chronic infections, UV light exposure, vaccinations, 
medicinal drugs, and exposure to EBV and other viruses; and studies of 
tumor genetics to discern the sequence of genetic changes that leads to 
lymphoma.
                       lymphoma research workshop
    Question. What are the National Cancers Institute's plans to 
respond to the Subcommittee's request to convene a scientific workshop 
to examine the current state of lymphoma research and identify 
opportunities for further study at the NCI?
    Answer. The NCI has been instrumental in a number of meetings to 
help plan for future scientific directions for lymphoma research. NCI 
researchers were involved in developing the new international 
classification system for lymphomas, the Revised European-American 
Lymphoma Classification, as well as a modification of this system by 
the World Health Organization. Over the past year, the NCI led a series 
of workshops which resulted in a set of standardized criteria to assess 
response following treatment of lymphomas (J Clin Oncol, April, 1999). 
These guidelines will improve our ability to compare results among 
clinical studies and will help facilitate the identification of more 
active drugs.
    NCI representatives have also led or participated in numerous 
symposia at national and international meetings to make available to 
the practicing oncologist information on treatment advance in 
lymphomas. In addition, NCI representatives regularly participate in 
lymphoma patient support groups to inform patients and their families 
about the new advances in lymphoma therapy and to encourage 
participation in clinical trials.
    The NCI has had ongoing discussions with the National Lymphoma 
Research Foundation and the Cure for Lymphoma Foundation to discuss 
directions for lymphoma research. A representative of the NCI recently 
participated in a think tank sponsored by the National Lymphoma 
Research Foundation, which was conducted to set a national agenda for 
lymphoma research. The NCI has held two meetings in 1998 with the 
lymphoma leadership of the Cooperative Oncology Groups to develop and 
coordinate national strategies for clinical research trials in 
Hodgkin's Disease and Non-Hodgkin's Lymphoma. The NCI representative 
will also meet with international lymphoma experts at the International 
Lymphoma Meetings in June, 1999 to discuss future strategies for 
lymphoma treatment. Within the next year, the NCI will be initiating a 
series of State of the Science Meetings, which will attempt to 
integrate translational research with clinical research and prioritize 
the most compelling clinical research questions for national studies.
                        lymphoma research agenda
    Question. Specifically what is the NCI's research agenda on 
lymphoma?
    Answer. The NCI has an outstanding tradition of leadership in basic 
and clinical research in the lymphomas. The NCI has supported and 
continues to support many basic and clinical research programs which 
are attempting to better characterize the immunology and biology of 
lymphomas, and to increase the potential for cure of these patients. 
Perhaps more than in any other tumor type, lymphoma research has 
produced an enormous knowledge base about these tumors, so that we have 
a better understanding of their biology. In particular, studies in Non-
Hodgkin's Lymphoma (NHL) have led to the concept of a defect in 
programmed cell death, or apoptosis, as critical to the development of 
lymphomas. An increasing number of genes related to this process have 
been identified. This knowledge has translated into other tumor types 
and has provided the opportunity for new targeted approaches such as 
anti sense and gene therapy.
    In the 1960s, NCI investigators developed the first curative 
chemotherapy program for Hodgkin's disease, and one of the earliest 
curative regimens for aggressive NHL. More recently, NCI-sponsored 
clinical trials have defined the standard treatments for early stage 
and advanced aggressive NHL, and advanced stage Hodgkin's disease. As a 
result of clinical trials, many of which were sponsored by the NCI, 
most patients (60 percent-90 percent, depending on the stage of the 
disease) with Hodgkin's disease can be cured with current therapies, as 
well as about 40 percent of those patients with aggressive NHL. 
Unfortunately, there are no curative treatments currently available for 
patients with indolent NHL, which accounts for 30 percent to 40 percent 
of NHL patients. Therefore, there are major challenges remaining in the 
treatment of these diseases. The NCI is involved in sponsoring many 
investigational protocols directed at improving the outlook for these 
patients.
    The NCI has a long and ongoing history of interactions with 
pharmaceutical and biotechnology companies which have led to the 
development of new agents with activity in lymphomas. In recent years, 
a great deal of attention has been focused on biological approaches to 
lymphomas. Indeed, the first monoclonal antibody approved by the FDA 
for the treatment of a human tumor (Rituximab), was developed for NHL 
through a collaboration between the NCI and the IDEC Pharmaceutical 
company. Currently, the NCI has agreements with several pharmaceutical 
companies to develop exciting new agents, including Compound GW506U78, 
flavopiridol, UCN-01, bryostatin, depsipeptide, and others. Based on 
exciting preliminary data, the NCI is launching a national protocol for 
the use of Compound 506U for patients with aggressive lymphomas. The 
NCI has recently entered into another agreement with the IDEC 
corporation to study a new antibody against lymphomas that is linked to 
a radioisotope (radioimmunoconjugate) which, in preliminary trials, has 
shown extremely exciting activity. Using the Group C and TRC 
mechanisms, the NCI has facilitated more rapid availability of 
investigational agents to community physicians and their patients.
    The NCI remains committed to improving the outcome of patients with 
lymphoma through basic and clinical research. Additional research is 
needed to understand the fundamental questions that are key to 
continued progress in this field of research. For example, additional 
studies are needed to better understand the mechanisms by which tumor 
cells become resistant to our current therapies. A number of important 
genes have been identified in lymphomas which have been implicated in 
the cause of lymphoma and in their acquired resistance to treatment. 
Further studies are necessary to permit the development of specific 
therapeutic agents directed at those targets.
    In summary, the NCI considers lymphomas to be a high priority for 
basic and clinical research. The research agenda has included 
developing new and more clinically relevant classifications and 
guidelines for treatment outcome assessment. Importantly, the NCI 
supports the research which will enable better understanding of the 
biology and immunology of lymphomas which will lead to strategies that 
target specific molecular defects in the tumor. A major emphasis 
continues to be on testing new chemotherapy drugs and biological 
agents. Finally, NCI representatives will continue to play a role in 
educating oncologists in the community and their patients about the 
most recent advances in the treatment of patients with lymphomas.
                                 ______
                                 
               Question Submitted by Senator Slade Gorton
                          gene therapy centers
    Question. It is my understanding that in September 1998 the NIDDK's 
Advisory Council recommended that, if additional funds were made 
available, an award should be made to continue the gene therapy 
research program at the University of Washington. Since that time, your 
Institute has received a 14 percent increase in its budget, yet you 
have not made a commitment to continue this program. Would you explain, 
why, in spite of significant funding increases for meritorious 
research, this program was not continued?
    Answer. In fiscal year 1999, the NIDDK has funds available for 
three gene therapy centers. The University of Washington was not 
competitive for these awards, based on the results of initial peer 
review. The Center at the University of Washington was given six months 
of additional funding to carry it through June, 1999. As the year 
progresses, there will be other centers in the general area of Cystic 
Fibrosis that will be under review. It is possible that the University 
of Washington could emerge in a more competitive manner.
                                 ______
                                 
                 Questions Submitted by Senator Jon Kyl
                           stem cell research
    Question. With respect to the January 15, 1999 legal opinion 
regarding federal funding for research involving human pluripotent stem 
cells, is it the NIH's position that as long as federal funds are not 
used for the specific act of destroying a human embryo, they can be 
used to fund all other parts of a research project that depends on the 
prior destruction of such an embryo? Was this always the NIH's 
position?
    Answer. NIH has not previously asked the DHHS General Counsel for a 
legal memorandum explicating Section 511 of the Department's 
appropriation. The legal memorandum of January 15 finds that the 
statute precludes federal funding of research in which embryos are 
destroyed, discarded or knowingly subjected to impermissible risk. The 
activity not supported by federal funding is the derivation of the stem 
cells from embryos that are destroyed or subject to more than 
permissable risk in that process.
    Question. You testified before the House Commerce Committee in June 
of 1997 about prohibited research that was allegedly conducted by Dr. 
Mark Hughes. In your testimony you described the wrongdoing as 
involving the diversion of NIH equipment and trainees, which were on 
loan to Dr. Hughes for single cell biology research at Georgetown 
University, to prohibited embryo research being conducted by the doctor 
at Suburban Hospital in Maryland. The NIH apparently severed its ties 
to the doctor after looking into the matter. Doesn't the NIH's broad 
interpretation of the funding ban in 1997 conflict with the very narrow 
interpretation that is reflected in the January 15, 1999 legal opinion?
    Answer. The interpretation of the prohibition on federal funding of 
human embryo research reflected in my referenced testimony of June 19, 
1997, does not conflict with the interpretation in the January 15, 1999 
legal memorandum of the HHS General Counsel. In my testimony, I stated 
that Dr. Mark Hughes' pre-implantation genetic diagnostic research, 
using NIH equipment and trainees, subjected human embryos to risk of 
injury or death greater than that allowed for research on fetuses in 
utero under 45 CFR 208(a)(2) and section 498 of the Public Health 
Service Act, in violation of the human embryo research federal funding 
restrictions. That situation involved federally funded research on 
embryos, while the legal memorandum addressed research on human 
pluripotent stem cells, which are not embryos.
    Question. How does the NIH expect stem cells to come to be in 
federally funded research projects?
    Answer. NIH has not begun reviewing any proposals for federally 
funded research utilizing human pluripotent stem cells and, thus, is 
unable to predict what those proposals will contain or how they will 
propose to operate.
    Question. In other words, do you anticipate that federal funds will 
be used to acquire a supply of the cells or to compensate researchers 
or laboratories for acquiring and providing them? Would such 
compensation not violate the federal funding ban?
    Answer. NIH will receive advice from the National Bioethics 
Advisory Commission and from a Working Group created to develop, with 
broad input, guidelines for federal funding of research utilizing human 
pluripotent stem cells. Those consultations and deliberative processes 
have not yet been completed, so it is not possible to state what the 
boundaries of federal funding of such research will be.
    Question. Alternatively, if the cells are donated or provided at no 
cost, how will the NIH assure that federal funds are not used 
indirectly to help acquire the supply (e.g., as in the Hughes case when 
NIH-funded equipment was utilized in prohibited research)?
    Answer. As with all NIH grants and grantees, and without regard to 
the means through which any federally funded researchers acquire human 
pluripotent stem cells, NIH will carefully monitor the activity of 
researchers receiving NIH funds. As in the case of Dr. Hughes, if there 
is wrongdoing, it will be promptly sanctioned.
    Question. Some research has apparently shown an unexpected degree 
of success in adapting adult stem cells to become more versatile and to 
produce a wide variety of other cells. Dr. Ronald McKay, a stem cell 
expert at the National Institutes of Health, has said that this 
research points to ``alternative strategies'' to the use of embryos. 
Wouldn't it be prudent for the NIH to pursue these ethically acceptable 
alternatives first?
    Answer. The 1999 report in Science showing that stem cells taken 
from the mouse brain and grown in culture can be returned to a mouse to 
produce blood cells was another in a series of recent breakthroughs 
that are changing our view of stem cells. This finding suggests that 
adult stem cells previously thought to be committed to the development 
of one line of specialized cells may have more flexibility than 
previously thought. If this finding holds true for human adult stem 
cells, there is, indeed, enormous potential for using such adult stem 
cells as therapies for a number of diseases. It is important to note, 
however, that breakthroughs in the treatment and diagnosis of disease 
are, most often, the result of pursuing many varied lines of research 
that have a common goal.
    Question. Might the use of adult stem cells be more promising than 
some of the proposed embryonic experiments because cells taken from the 
patient would not be rejected by that person's immune system?
    Answer. Cells taken from one's own body would be less likely to 
produce an immune response and to be rejected than cells from a 
``foreign'' source. However, it is important to understand that human 
adult stem cells have been isolated only from a few types of tissue 
and, when they have been identified, they are often present in only 
minute quantities and are difficult to isolate and purify. In addition, 
the isolation and growth of sufficient numbers of one's own cells takes 
time. For some disorders or injuries, banked stem cell-derived tissue 
from a variety of sources that could be matched to different recipients 
would be a better alternative. Also, it is important to note that 
breakthroughs in the treatment and diagnosis of disease are, most 
often, the result of simultaneously pursuing many lines of research 
that have a common goal.
          national multipurpose research and training centers
    Question. Arizona is home to one of NIDCD's five National 
Multipurpose Research and Training Centers. Because of this, the state 
has become one of the nation's centers for diseases of the nervous 
system--such as Parkinson's, Alzheimers, and stroke--that effect speech 
and language. As you know, these diseases afflict a disproportionate 
number of our senior citizens.
    The Arizona National Center was instituted to train clinicians and 
families throughout Arizona and America on how to treat these diseases. 
It has become a principal resource in our region to help those 
afflicted with these diseases and their families through treatment, 
support groups, and educational programs.
    As you know, NIDCD is planning to phase out Arizona's National 
Center. Could you provide any statement on what the projected impact of 
the phasing out of this center would have on our state and region?
    Answer. The NIDCD cannot say with certainty what the impact on 
Arizona or your region will be, because NIH awards grants based on peer 
review of their scientific merit. The decision not to further extend 
the RTC awards was reached after much deliberation on the part of 
Institute staff, driven in part by the recommendations of the NIDCD 
Work Group on Single and Multiple Project Grants (a group of 
distinguished scientists from the NIDCD constituency) as well as by 
feedback on their recommendations received from the broader scientific 
community (http://www.nih.gov/nidcd/notice.htm). We have concluded 
that: (1) excellence in each of the four activities supported within an 
RTC is best served by reviewing and supporting each activity separately 
rather than as a composite; (2) research and research training being 
conducted by the RTCs can be supported by other grant mechanisms used, 
or being developed by, the NIDCD; (3) the continuing education 
activities should be supported with resources provided by sources other 
than NIDCD; and (4) that the information dissemination activities are 
important to the mission of the NIDCD, but should be supported through 
an alternative mechanism. We are currently developing such a mechanism.
    Scientists and clinicians in institutions that are able to 
demonstrate excellence in one or more, but not necessarily all four 
activities, will be able to compete for support. By expanding the 
number of individuals able to compete for support to conduct these 
important activities, we optimize the likelihood of supporting the very 
best applications NIDCD can receive. Academic and research institutions 
in Arizona will be eligible to compete for grant support for research, 
training, and information dissemination. The only change is that grant 
applications for each of the activities will be reviewed and supported 
individually to ensure excellence in each activity.
                                 ______
                                 
               Questions Submitted by Senator Tom Harkin
                           clinical research
    Question. Dr. Varmus, one of your priorities is to ``Reinvigorate 
Clinical Research.'' I agree that this is a high priority. It seems to 
me that we need to do this in order to translate basic research into 
improved human health. Is reinvigorating clinical research a high 
priority of all of the NIH institutes?
    Answer. Yes, reinvigorating clinical research is a high priority of 
all NIH institutes. The NIH recognizes the importance of translating 
basic research findings to clinical settings. Each Institute and Center 
(IC) supports clinical research and clinical trials portfolios that are 
consistent with its mission. In addition, each IC supports an array of 
clinical research career development programs, e.g., individual-based 
(K08) or institution-based (K12) programs. These are ongoing programs 
that have received renewed emphasis in many institutes.
    An additional example of the institutes' support for clinical 
research is their firm commitment to the new NIH-wide clinical research 
training and career development initiatives, the Mentored Patient-
Oriented Research Career Development Award (K23), the Midcareer 
Investigator Award in Patient-oriented Research (K24), and the Clinical 
Research Curriculum Award (K30). These programs have been 
enthusiastically received by the research community. We have received 
nearly 200 applications each for the K23 and K24 programs, and over 60 
applications for the K30 programs. Depending on the outcome of the 
reviews, it is anticipated that the NIH will meet its targets of 
funding approximately 80 K23 awards, 50-80 K24 awards and 20 K30 awards 
in fiscal year 1999.
    Question. And, are all of the institutes spending about the same 
percentage of their budgets for clinical research?
    Answer. While all of the institutes support clinical research, they 
do not spend the same percentage of their budgets for this area of 
research. The missions of some institutes (e.g., NIGMS and NHGRI) are 
simply more basic research oriented.
    Question. What percentage of the overall NIH 1999 budget will be 
devoted to clinical research?
    Answer. NIH will spend 31 percent of its budget on Clinical 
Research in fiscal year 1999.
    Question. Will NIH be able to spend the same percentage for 
clinical research under the fiscal year 2000 budget?
    Answer. Yes, NIH will be able to spend the same percentage (31 
percent) on Clinical Research in fiscal year 2000.
                           research on aging
    Question. Dr Varmus, research has extended life expectancy. But 
that in itself has created new problems. Quality of life problems. I'm 
thinking about keeping our seniors independent. In your opinion, are we 
supporting a sufficient amount of research on such disorders as 
osteoarthritis and concentrating our research investment on mortality?
    Answer. Research designed to increase our knowledge of how to 
maintain mobility and independent function in older persons is a 
priority for the National Institutes of Health. The National Institute 
on Aging (NIA) and the National Institute on Arthritis and 
Musculoskeletal Disease (NIAMS), as well as other institutes, support 
basic, epidemiological and clinical investigations on diseases which 
limit functional independence in older persons. Studies designed to 
treat osteoporosis and osteoarthritis have been and are a focus of the 
research carried out by NIAMS and NIA. The need for lifestyle changes 
including diet and exercise, as well as the appropriate use of 
medication, are important topics which have been investigated by the 
NIA. One example of this has been a study of walking as a treatment for 
osteoarthritis of the knee in older persons which resulted in 
improvement in self-rated pain and disability as well as in objective 
measures of mobility. The reduction of disability is a critical 
priority of NIH-supported research. Recently published findings 
resulting from NIA-supported research indicate that since 1982 there 
has been a substantial and accelerating decrease in rates of disability 
among Americans aged 65 and older. Continued research efforts will be 
targeted at causes of disability such as osteoarthritis and 
osteoporosis to ensure continued improvement in quality of life for 
older men and women. These studies may also result in an additional 
benefit, decreasing mortality rates and increasing longevity.
                   multiple myeloma research funding
    Question. How many research project grants over the past 5 years 
have been awarded which primarily focus on multiple myeloma?
    Answer. The NCI conducts a modest program of research in multiple 
myeloma. It is particularly difficult to provide a precise record of 
the grants awarded in multiple myeloma over the last five years. This 
is because recent research in angiogenesis suggests that this field may 
be extremely relevant to multiple myeloma, but this research is not 
currently coded in our portfolio for this disease.
    In addition, our knowledge of this field is still limited and 
reporting the numbers of awards which primarily focus on multiple 
myeloma requires some assumptions to be made which are based on 
professional judgment rather than quantifiable facts. To answer the 
question, we have assumed that projects which have one quarter of the 
effort directed to multiple myeloma should be regarded as primarily 
focused on multiple myeloma--approximately half of the multiple myeloma 
portfolio. From this perspective, the number of awards for each of the 
past five years are with at least 25 percent relevance to multiple 
myeloma are:

------------------------------------------------------------------------
                                   1994    1995    1996    1997    1998
------------------------------------------------------------------------
Number of awards:
    Competing...................       3       3       7       6       8
    Noncompeting................      14      12      11      12      14
                                 ---------------------------------------
25 percent or more related......      17      15      18      18      22
------------------------------------------------------------------------

    I would like to caveat these estimates. As with most estimates for 
a subset of the science supported by the National Cancer Institute, 
questions about multiple myeloma raise questions of definition and of 
classifying projects in mutually exclusive or overlapping areas. A 
different group of scientists might review our portfolio and arrive at 
a slightly different estimate of funding.
    Question. How many have been approved but not funded because of the 
lack of funds?
    Answer. The estimated number of approved competing applications 
with at least 25 percent relevance to multiple myeloma research are:

------------------------------------------------------------------------
                                   1994    1995    1996    1997    1998
------------------------------------------------------------------------
Number of Competing Applications/
 Awards:
    Approved....................      10       8      14      14      24
    Funded......................       3       3       7       6       8
    Unfunded....................       7       5       7       8      16
------------------------------------------------------------------------

    Question. What were the funding levels for the approved grants?
    Answer. The funding for grants with 25 percent relevance to 
multiple myeloma (including new and noncompeting grants) is:

------------------------------------------------------------------------
                                   1994    1995    1996    1997    1998
------------------------------------------------------------------------
Number of awards................      17      15      18      18      22
Dollars in millions.............     2.6     3.3     3.9     3.4     5.4
------------------------------------------------------------------------

    Question. Exclusive of clinical trials, how many grants are 
expected to be funded for multiple myeloma in fiscal year 2000?
    Answer. Assuming a similar level of appropriation, NCI will 
continue to provide a consistent funding level for multiple myeloma. 
The total funding for multiple myeloma research in 2000 is estimated to 
be $12 million. Based on prior year trends, about half of this, or $6 
million, will have at least 25 percent of the effort directed to 
multiple myeloma.
    Question. What are the fiscal year 1999 and proposed fiscal year 
2000 budgets for basic science research in multiple myeloma?
    Answer. The NCI estimates that the multiple myeloma funding in 
fiscal year 1999 will be $11,700,000 and that the fiscal year 2000 
multiple myeloma funding level will be approximately $12,000,000.
    Question. What advancements have been made from multiple myeloma 
research What has been learned from multiple myeloma research at NCI?
    Answer. The NCI has sponsored a number of basic laboratory and 
clinical trials that have advanced our knowledge and treatment of 
multiple myeloma. Progress in understanding myeloma has been hampered 
by a lack of a suitable model for the disease. Dr. Epstein and 
coworkers at the University of Arkansas have developed such a model in 
an immunodeficient mouse. They were able to demonstrate that myeloma 
cells from about 80 percent of patients were able to grow in this 
system. This important observation will provide a framework for 
studying the biology of the disease and evaluating novel therapies.
    The Southwest Oncology Group, one of the NCI-sponsored cancer 
treatment cooperative groups, completed a clinical trial evaluating the 
role of steroids and interferon as maintenance therapy. They treated 
233 patients with a standard induction regimen (VAD). Those that 
responded were then randomized to either interferon or the combination 
of interferon plus steroids. The group that received the combination 
treatment had twice as long a time to progression and lived almost a 
year longer than the other group. Subsequent studies are determining if 
the interferon is actually needed.
    Several lines of evidence suggest that angiogenesis may play a role 
in the development of multiple myeloma. Dr. Barlogie and coworkers at 
the University of Arkansas conducted a clinical trial using the anti-
angiogenesis agent, thalidomide, to treat 89 patients with high risk 
disease. About a third showed a reduction in tumor-associated protein, 
with clearing of the bone marrow evidence of the disease in almost half 
of the assessable patients. Larger clinical trials are now being 
organized to build on these important observations.
    Question. Who is the NCI contact for further questions regarding 
multiple myeloma?
    Answer. The multiple myeloma contact for clinical and research 
issue at NCI is Dr. Bruce D. Cheson, Phone 301-496-2522.
    Question. I am especially concerned about the very high incidence 
and mortality in African Americans, especially following the IOM's 
recent report that NCI does not sufficiently fund cancer research 
focused on minority population. What is being done to address the 
disparate levels of myeloma incidence and mortality in African 
Americans?
    Answer. The high incidence of multiple myeloma in blacks and their 
poor outcome with standard therapies has been recognized for a long 
time. This observation led to a national conference held at the NCI to 
discuss the epidemiology of multiple myeloma, especially as it related 
to differences between blacks and whites. Unfortunately, there were no 
reasons identified to explain these findings, although research into 
this field is ongoing. The NCI has made a concerted effort to ensure 
adequate accrual of blacks and other minorities onto its cooperative 
group cancer treatment trials in multiple myeloma. Group minority 
accrual is carefully monitored and, if not felt to be adequate, plans 
are developed to improve on this performance.
                           nci budget in 2004
    Question. The cancer community has come forward with a research 
agenda which calls for the annual NCI budget to increase to $10 billion 
by 2004. Is this a well reasoned plan and are there adequate research 
opportunities to absorb this level of growth in the next five years?
    Answer. I believe you are referencing the recommendations emanating 
from the Cancer March on the Mall that occurred several months ago. 
That call for a $10 billion effort for cancer research in 5 years is 
most challenging and would represent a major ramping up of our current 
efforts. If NCI received additional funds above the President's budget 
request, NCI would apply them in support of these activities: (1) 
Sustain at full measure the proven research programs that have enabled 
us to come this far; (2) Seize extraordinary opportunities to further 
progress made possible by our previous research discoveries and; (3) 
Create and sustain mechanisms that will enable us to translate rapidly 
our findings from the laboratory into practical applications that will 
benefit everyone. Among the initiatives that would be addressed with 
buildup to a $10 billion investment are:
Basic research and discovery
    An enhanced level of support for all types of investigator-
initiated research remains a fundamental need. Research in the 
laboratory, clinic, and community provides the platform on which 
translational research and clinical testing stand. To ensure that 
excellent ideas have a chance to be tested, and new investigators are 
attracted to research on cancer, support for approximately half of the 
approved applicant pool would be possible.
Clinical trials
    NCI is aiming for a five-fold increase over the next five years in 
the number of people participating in cancer prevention, detection, 
diagnosis, and treatment trials through the NCI-supported Cooperative 
Treatment Trials Program. Approximately 300,000 individuals participate 
in all NCI-sponsored clinical trials; increasing this number five-fold 
will ensure that over one million patients each year will have access 
to the latest treatments and preventive, detection, and diagnostic 
techniques through a clinical trial. NCI is also ready to pilot a newly 
designed national clinical trials program to test new approaches to the 
treatment and prevention of cancer. This program will offer more 
innovative trials to a larger number of participating physicians and 
patients. Additional funding would move this reconfiguration forward 
and enable NCI to migrate studies to this new program not only in 
prostate cancer, but also in breast, genito-urinary, and lung cancers, 
and leukemia.
Preclinical development
    Studying human cancers in mice has made significant contributions 
to our understanding of the biological mechanisms of cancer. Technology 
has now advanced to the point that it is possible to develop and 
validate mouse models of human cancer. Access to these models by the 
research community is critical to advancing the fight against cancer. 
Additional investment and the development of an infrastructure to 
support, manage, and efficiently distribute these powerful new tools is 
needed. NCI has developed and planned a number of innovative activities 
in an effort to meet the needs of the cancer field in this area.
Detection
    NCI recognizes the need for a coordinated national to accelerate 
translation of discoveries into early detection technologies. As an 
example the Early Detection Research Network, has been launched. This 
multi-center network will provide resources for essential translational 
research linking basic sciences, clinical sciences, public health, 
biostatistics, informatics, and computer sciences. The network's goals 
will be to discover and to coordinate the evaluation of early 
biological indicators, or biomarkers, of an elevated risk or presence 
of a cancer. Additional efforts including the identification of 
environmental agents that damage the DNA with the deign of protective 
agents is an area for pursuit. Also, a comprehensive public education 
program regarding screening and risk profiling including the 
underserved populations would be possible.
Studying emerging trends
    For over 25 years, NCI's Surveillance, Epidemiology, and End 
Results (SEER) database has tracked in impact of cancer on the American 
people. SEER has allowed us to identify environmental carcinogens and 
to assess the influence of risk factors associated with behavior and 
lifestyle while maintaining the highest level of individual 
confidentiality. Additional resources would enhance the SEER program so 
that it not only accurately tracks changes in cancer rates, but also 
contains information necessary for the scientific interpretation of 
these data and for the planning of additional risk factor research and 
public health intervention programs.
Diagnosis
    NCI expects that tumor diagnosis and classification will be 
revolutionized in the coming years as emerging knowledge in molecular 
genetics is applied. Some of this information will be gained through 
NCI's newly established Tumor Gene Index, which will catalog the 
genetic characteristics of tumors at each stage of growth. Also new, 
minimally invasive diagnostic techniques that are emerging from the 
work of the NCI's Cancer Genome Anatomy Project, Imaging Sciences 
Working Group, and elsewhere must also be applied and tested in people. 
To accomplish this aim, the NCI would like to establish a multi-center 
trial network in diagnostic imaging. To address the need for a new, 
molecular-based tumor classification system NCI has launched the 
initiative the Director's Challenge: Toward a Molecular Classification 
of Tumors. This challenge is to the scientific community to harness the 
power of contemporary molecular analysis to create a more informative 
tumor classification system. This ``Director's Challenge'' is intended 
to lay the groundwork over a five-year period for changing the system 
of tumor classification from a visual to a molecular basis.
Cancer prevention
    NCI believes it is important to determine the most effective age to 
begin cancer prevention programs. Priority for new resources would be 
given to developing innovative, effective interventions for children at 
early ages, under 10 years of age, when they are most receptive to 
parental and adult influences. Environmental influences also have an 
impact on children. Areas of particular concern and opportunity during 
early childhood for prevention of cancer include, but are not limited 
to, tobacco use, sun exposure, and diet and nutrition. Tobacco use 
research will focus on areas where there are gaps in knowledge, such as 
adolescent smoking and the use of non-cigarette tobacco products, and 
will train the next generation of tobacco-use researchers.
Treatment research
    Unprecedented opportunities exist to exploit recent advances in 
biology, chemistry, and technology to accelerate the discovery and 
testing of new cancer therapies. Over the next five significant effort 
could be directed to further develop novel approaches. Currently, 
through a number of new initiatives, NCI is attempting to foster the 
rapid development of cutting-edge cancer therapies. A major barrier 
limiting development and testing of new agents in patients is the 
costly and specialized process involved in drug synthesis, formulation, 
pharmacology, and toxicology testing necessary to launch initial 
clinical trials. NCI has established the Rapid Access to Intervention 
Development (RAID) and Rapid Access to Preventive Intervention 
Development (RAPID) programs to assist researchers as they navigate the 
process of moving agents from the laboratory to the clinic. Through 
RAID and RAPID, investigators compete for access to NCI's development 
resources. NCI is also expanding its National Cooperative Drug 
Discovery Groups that link academic and industrial research groups and 
its Chemistry-Biology Centers that bring together experts in chemical 
diversity generation and assay development.
Improving quality of life for cancer patients
    Among the pursuits of the NCI is to improve the quality of life of 
cancer patients, including the need for the management of cancer pain 
as well as the medical needs of the long-term cancer survivors. New 
therapies for cancer pain improve the lives of cancer patients while 
new and effective treatments are extending people's lives. Additional 
biobehavorial research and psychosocial intervention would be pursued. 
As the U.S. population ages, living with cancer will be a reality for a 
growing number of Americans. Through quality of life research and 
activities, NCI is already making it easier for people with cancer to 
live longer, healthier and fuller lives.
Training and education
    We need the resources to train the scientists of tomorrow starting 
today. We need new kinds of scientists that cross disciplinary 
boundaries to meet the complex challenge of cancer. NCI has reviewed 
its training programs to identify how we could best train young 
investigators coming into the field and continue to develop the skills 
of scientists already pursuing cancer research. We have developed a 
strategic plan that is responsive to the needs of students, young 
investigators, midcareer scientists, and clinical investigators 
enabling them to stabilize and sustain productive research careers. New 
training initiatives are aimed at cross-training multidisciplinary 
scientists, at training physicians in the skills of clinical research, 
and at attracting increased numbers of minority students and young 
scientists into all aspects of cancer research.
                               nei budget
    Question. Why, has the National Eye Institute (NEI) been receiving 
among the smallest percentage increase of all the NIH Institute and 
Centers, given the magnitude of eye and vision disorders which will be 
occurring as the baby-boomers age in the next decade?
    Answer. The fiscal year 2000 President's Budget Request includes a 
proposed increase of 2.4 percent for NEI. This percentage increase is 
in line with that proposed for the other NIH Institutes and Centers. 
NEI, through its long-range planning process, has identified a number 
of high priority areas for vision research that it will pursue to the 
fullest extent possible within this or any other any level of funding.
    Question. When I look at the figures, the NEI's funding as a 
percentage of the NIH total is on the decline. Can you explain what is 
behind this trend in light of the pressing issues relevant to macular 
degeneration, cataracts, and glaucoma in older Americans?
    Answer. The fiscal year 2000 President's Budget Request includes a 
proposed increase of 2.4 percent for NEI. This percentage increase is 
in line with that proposed for the other NIH Institutes and Centers. It 
is true that NEI's funding has declined relative to that of the NIH as 
a whole. However, it should be pointed out that NEI did receive steady 
increases during the same period. In fiscal year 1999, for example, NEI 
received an increase of more than $40 million. These funds have been 
put to good use in advancing research on the many eye and vision 
problems which affect older Americans. Other areas of research that 
have grown faster than NEI, such as the Human Genome Project, will also 
yield results that will greatly benefit the search for answers to eye 
and vision diseases.
    Question. The NEI is among the largest of the NIH's neuroscience 
institutes, percentage-wise and in terms of funding. Over the past few 
years, the Institute has been increasing its neuroscience portfolio to 
include promising areas such as brain imaging and nerve rescue and 
regeneration. And yet, over this same period, it does not seem like 
much of your earmarked neuroscience, sometimes called ``Decade of the 
Brain,'' monies went to the NEI. Can you explain this allocation 
pattern?
    Answer. The fiscal year 2000 President's Budget Request includes a 
proposed increase of 2.4 percent for NEI. This percentage increase is 
in line with that proposed for the other NIH Institutes and Centers. 
Within the amount proposed for NEI, a significant portion will be 
devoted to neuroscience research. Among the research areas that will be 
actively pursued include studies on the guidance of developing neural 
connections within the visual system, retinal cell and tissue 
transplantation, nerve rescue and regeneration, brain imaging, and on 
the prevention of myopia (nearsightedness).
    Question. As you know, I am a strong proponent of diabetes 
research. I was very pleased with the passage of the Balanced Budget 
Act of 1997, that included a provision for the NIH to receive 
approximately $30 million per year for each of 5 years, for research on 
the causes, prevention, and treatment of diabetes. I am puzzled by the 
small amount of money that has been directed to vision research. As you 
know, loss of vision is a major, and very devastating, complication of 
diabetes. Why is it that the NEI received only $2 million of NIH's $30 
million.
    Answer. In fiscal year 1998 the NEI joined with several other NIH 
institutes in issuing an RFA (Request for Applications) entitled 
``Pathogenesis and Therapy of Complications of Diabetes''. As a result 
over 140 applications responded to the RFA and were reviewed for 
scientific merit. Approximately 40 applications dealt with research on 
the visual system. Of these, nine applications were funded. In 
addition, NEI funded supplements to already funded applications for a 
total expenditure of $2 million. The NEI subsequently funded two 
additional competing grants from this pool of applications using its 
appropriated grant funds.
    In fiscal year 1999, one new RFA has been issued with relevance to 
NEI entitled ``Pilot Studies for New Therapies for Type 1 Diabetes and 
Its Complications.'' It is expected that a number of eye and vision 
related applications will be submitted in response to this RFA.
                          autoimmune research
    Question. The NIAID is proposed to receive $30 million of funding 
for autoimmune diseases. The Conferees, in the fiscal year 1999 
Conference Report, wants the NIH Autoimmune Diseases Coordinating 
Committee to coordinate autoimmunity research on the NIH campus. What 
are your plans to coordinate this activity? How will the $30 million be 
distributed to the Institutes and Centers conducting research on 
autoimmune disease?
    Answer. The Autoimmune Diseases Coordinating Committee, a trans-NIH 
working group, provides coordination and focus for autoimmunity 
research at NIH. The group worked to develop a framework for 
autoimmunity research and to generate cross-cutting initiatives that 
address multiple autoimmune diseases. After consultation with NIAID 
Director Dr. Anthony Fauci and leaders from relevant NIH Institutes, 
the plan was approved by the Director, NIH. Support will be provided 
for a broad spectrum of autoimmunity research projects from basic 
pathogenesis to clinical trials and selected initiatives focused on 
specific diseases or extraordinary scientific opportunities. The trans-
NIH autoimmunity working group developed a plan that includes 16 
research initiatives and the involvement of multiple Institutes, 
Centers and NIH OD offices. Funding for these initiatives will be 
allocated based on the applications received in response to each of 
these initiatives. Applications will be assigned to specific Institutes 
or Centers for potential funding using established referral guidelines 
and then evaluated for scientific and technical merit.
                          macular degeneration
    Question. Is it correct that there are vitamins and nutritional 
supplements that can improve the health of the macula and perhaps 
prevent macular degeneration?
    Answer. This question has not been definitively answered. The 
National Eye Institute, however, is supporting a large, randomized 
clinical trial (the Age-Related Eye Diseases Study) which will provide 
important information as to the protective effects of antioxidant 
nutrients and zinc. Oxidative damage to the retina is theorized to 
increase the risk of age-related macular degeneration. Because 
antioxidant nutrients and carotenoid pigments concentrated in the 
macula may offer a protective effect against this oxidative damage, a 
number of observational, animal, and laboratory studies have been 
conducted. These studies have provided leads as to which nutrients 
might be important in protecting the retina against damage, but study 
results to date have not been conclusive nor has any specific vitamin 
or nutritional supplement been identified as protective against AMD. 
Lutein and zeaxanthin are carotenoids that are concentrated in the 
retina and lens and have been reported in observational studies to 
decrease the risk of AMD. The NEI has a strong commitment to determine 
the best way in which to evaluate the effect of lutein on eye diseases 
and has encouraged preliminary work to determine the appropriate 
pharmacologic dose of lutein in an elderly population and encouraged 
work to improve methods to reliably measure macular pigment. These 
preliminary studies will guide future work in this area.
                    age-related macular degeneration
    Question. I read in your fiscal year 2000 Congressional 
Justification that the NEI is working on identifying which gene 
mutations may contribute to the development of age-related macular 
degeneration. Please discuss the research that is being conducted on 
this topic.
    Answer. The NEI continues to devote significant resources to the 
identification of gene mutations in age-related macular degeneration 
(AMD). About two years ago NEI-supported investigators reported 
identification of a gene called ATP-binding transporter gene (ABCR) in 
Stargardt's disease, a recessive macular dystrophy similar to ARMD but 
occurring in younger persons. Shortly thereafter, the same team 
identified mutations in the Stargardt's gene in a limited group of 
persons with AMD. However, some recent work by other NEI-supported 
scientists casts some doubt on this association. Work also continues on 
the identification of the location of other genes such as that for 
Dominant Radial Macular Drusen, an autosomal dominant macular disease 
that shares some clinical features with AMD. Investigators have been 
able to pinpoint the location of this disease gene to a small portion 
of chromosome 2. As the location on the gene is further refined it will 
be possible to begin to analyze genes located in this area of the 
chromosome for mutations. Geneticists at Merck Research Laboratories 
recently discovered ``bestrophin'', the gene causing Best's disease. 
The function of the protein coded by this gene is not yet known. The 
Best's disease gene had been localized to chromosome 11 by NEI-
supported scientists in 1992.
                      low vision/vision impairment
    Question. What is the NEI doing to assist the individuals 
(particularly the elderly ones) that are diagnosed with macular 
degeneration, who have uncorrectable vision and who are in need of 
special services and devices?
    Answer. Through its information office, the NEI currently provides 
information on a variety of low vision resources including those 
available from national and state organizations. This fall, the 
National Eye Health Education Program will launch a new public 
education program aimed at addressing the needs of people over age 65 
with low vision. The low vision program will be instrumental in 
informing Americans about visual impairment and how the use of visual 
devices and rehabilitative services can maximizeremaining vision to 
improve a person's quality of life. A variety of methods will be used 
to educate the older population including media campaigns, programs for 
social service and aging networks that service the target population, 
and public education activities such as exhibits in shopping malls. The 
NEI is also collaborating with close to 60 national organizations in 
the NEHEP Partnership to ensure that manpower and resources are 
available to meet the needs of our aging population.
                              neuroscience
    Question. ``Biology of Brain Disorders'' or neuroscience continues 
to be one of NIH's ``Areas of Emphasis''. According to your fiscal year 
2000 budget, the NEI is a participant in this initiative. Please 
discuss some of the neuroscience research that NEI is conducting.
    Answer. The NEI supports an extensive portfolio of both clinical 
and laboratory neuroscience research. Visual neuroscience continues to 
have a significant impact on the advancement of other fields of 
neuroscience and our understanding of the biology of brain disorders. 
Current research on the development and regeneration of the retina and 
the visual pathways in the brain has provided us with critical insights 
into the basic molecular and genetic mechanisms guiding the ``wiring'' 
of the brain during development. This research has provided a 
conceptual basis for understanding a wide range of childhood 
developmental disorders involving the brain. The accessibility of the 
visual pathways, such as the optic nerve, has enabled scientists to 
develop powerful models for studying factors which enhance and inhibit 
the regeneration of the adult CNS. The application of sophisticated 
recording and brain imaging technologies to the visual system, has 
helped scientists understand the complex interactions occurring at the 
interface between sensory perception and motor action in the brain. 
This research has provided important insights into many higher brain 
functions that are critical for cognition such as attention, memory, 
learning and brain disorders affecting these functions. Vision research 
will continue to play a significant role in this important arena of 
inquiry.
                                diabetes
    Question. You have mentioned to us on several occasions that 
diabetic eye disease can almost always be prevented with early 
detection and timely treatment. Unfortunately, the problem lies in the 
fact that only about one-half of the diabetics (those at great risk) 
are getting annual dilated eye exams. Is the NEI doing anything to get 
the word out?
    Answer. The NEI, through its National Eye Health Education Program 
(NEHEP), works with close to 60 public and private organizations in the 
NEHEP Partnership. Through this Partnership, community programs receive 
educational materials and technical assistance in designing and 
conducting programs on diabetic eye disease. For the past five years, 
the NEI has been working in collaboration with over 40 organizations in 
the National Eye Health Education Program Partnership to encourage 
people with diabetes to have an annual dilated eye examination, which 
enables eye care professionals to detect and treat diabetic eye 
disease. Building on this national network, organizations have been 
able to reach out more effectively in their local communities, thus 
contributing to the success of reaching more people at risk from 
diabetic eye disease. This year, over 15,000 National Diabetes Month 
kits were distributed to managed care organizations, physicians 
offices, and community-based organizations to help them plan local 
activities. In support of these activities, over 1.6 million NEI 
brochures on diabetic eye disease brochures were distributed. Over 20 
million people were exposed to print media articles and ads on diabetic 
eye disease.
                          retinitis pigmentosa
    Question. Retinitis Pigmentosa is discussed in your fiscal year 
2000 CJ. How prevalent is this disease? What part of the population 
does it affect? Might gene therapy be in the horizon for treating this 
disease?
    Answer. Retinitis Pigmentosa (RP) affects approximately 100,000 
people in the United States and 1.5 million people around the world 
with a prevalence of 1 in 4000. Some patients become blind as early as 
age 30; the majority are legally blind by age 60. Phase I gene therapy 
clinical trials should begin within the year, so this effort is still 
in its initial stages. In animal models with retinal degeneration, 
photoreceptor cells can be rescued by introducing normal genes. 
Further, virus-based delivery systems have been used successfully in 
animal models to inhibit the ``cell death'' pathway and delay 
photoreceptor death. NEI-funded investigators are actively searching 
for biological tools that will form the underpinnings for successful 
gene therapy in humans.
                                 myopia
    Question. Many adults are near-sighted or myopic. Is the NEI 
conducting any research to prevent or treat this common vision 
disorder?
    Answer. The NEI supports both laboratory and clinical research on 
myopia. Three large clinical projects of myopia are currently underway. 
The Collaborative Longitudinal Evaluation of Ethnicity and Refractive 
Error Study is designed to document normal patterns of ocular growth 
and to develop a profile of risk and predictive factors for myopia in 
Caucasian, African-American, Hispanic and Asian children. An estimated 
3,000 children will be enrolled and followed longitudinally. The Myopia 
Progression Study is a clinical trial designed to determine whether 
bifocals reduce the progression of myopia. Children with myopia will be 
randomly assigned to wear single vision lenses or bifocals. Follow-up 
eye examinations are planned for a minimum of 3 years. The Correction 
of Myopia Evaluation Trial is a multi-center clinical trial designed to 
determine whether progressive addition lenses reduce the progression of 
myopia. An estimated 450 children with mild levels of myopia will be 
enrolled and will be randomly assigned to wear single vision lenses or 
progressive addition lenses. Follow-up eye examinations are planned for 
at least 3 years.
                                glaucoma
    Question. Is it correct that NEI-supported research has found that 
certain glaucoma treatments work better on certain minority 
populations? What are the two treatments in question?
    Answer. The Advanced Glaucoma Intervention Study (AGIS) is a multi-
center, randomized clinical trial designed to determine the long-range 
outcomes of two alternative intervention sequences among patients with 
primary open-angle glaucoma in whom medical therapy had failed. The two 
treatment sequences under study are either trabeculectomy followed by 
argon laser trabeculoplasty (ALT) after the initial trabeculectomy 
failed followed by another trabeculectomy after the ALT failed 
(sequence TAT) or ALT followed by trabeculectomy after the ALT failed 
and another trabeculectomy after the initial trabeculectomy failed 
(sequence ATT). Study findings, reported in 1998, indicate that, at 
seven years after initial therapy, African Americans may benefit most 
from the sequence beginning with ALT whereas whites may benefit most 
from the sequence beginning with trabeculectomy.
                           clinical research
    Question. Dr. Battey, is reinvigorating clinical research a high 
priority of your institute?
    Answer. Yes, NIDCD places a high priority on reinvigorating 
clinical research. Given the remarkable progress that has been made in 
understanding the basis for communication disorders such as hereditary 
hearing impairment, there is an unprecedented opportunity to begin to 
apply this new knowledge to develop more specific and timely diagnostic 
capabilities, as well as more precise intervention strategies. 
Developing these new diagnostic capabilities, as well as determining 
the optimal intervention strategy for each group of individuals with a 
particular communication disorder, will be important goals for NIDCD 
clinical research in the near future.
    Question. What percentage of your budget will be spent on clinical 
research in fiscal 1999 and fiscal 2000?
    Answer. The NIDCD obligated approximately 45 percent toward 
clinical research and research training in fiscal year 1998. We would 
expect to support a similar amount in fiscal year 1999 and fiscal year 
2000.
    Question. Are you supporting two Clinical Trial Cooperative Group 
that appeared in this institute's previous budgets? (If nowhy not? It 
appears that this is one mechanism for translating basic research into 
improved health.)
    Answer. The NIDCD is currently supporting the Clinical Trial 
Cooperative Groups. In fiscal year 1999, NIDCD will provide $2.4 
million to support their clinical research activities.
    Question. Do you have plans to expand clinical research in the near 
future?
    Answer. Yes, NIDCD plans to expand its clinical research efforts in 
a number of exciting new directions. Let me provide two important 
examples where NIDCD-supported research has lead to new opportunities 
for clinical research:
    (1) There has been a remarkable wealth of new knowledge gained 
about the causes of some communication disorders, in particular 
hereditary hearing impairment. Within the last two years, several 
genes, where mutations are a common cause of nonsyndromic hereditary 
hearing impairment, have been identified. Mutations in one of these 
genes have been shown to be the cause of hereditary hearing impairment 
in up to one half of all children in some population groups. NIDCD is 
poised to take advantage of this important new information, and 
convened a Working Group in December, 1998 to seek advice regarding the 
best way to begin to use this new information in follow-up clinical 
studies. Their recommendations have been widely disseminated to the 
relevant clinical communities, and will form the basis for grant 
applications supporting research to ascertain the best ways to 
integrate the new genetic diagnostic capabilities into the clinical 
evaluation of a child with hearing impairment;
    (2) Recent research studies supported by NIDCD have shown that 
children with hearing impairment who are identified and receive 
intervention within the first six months of life develop better 
language skills than children whose hearing impairment is identified at 
a later time. In the near future approximately 19 states will implement 
programs to screen all neonates for hearing impairment before discharge 
from the hospital. As this effort expands, the need to define and 
validate optimal intervention strategies for infants with all degrees 
of hearing impairment is increasingly clear. The need for clinical 
studies to accomplish this goal was emphasized in the deliberations of 
a workshop sponsored by NIDCD to get advice from the research community 
on the subject of intervention strategies for children with hearing 
impairment identified in the newborn period. Approximately 10-20 
percent of the infants that will be identified as a result of neonatal 
hearing screening have profound hearing impairment, while the other 80-
90 percent have lesser degrees of hearing impairment, defining multiple 
populations of infants for whom optimal intervention strategies do not 
exist, and which remain to be developed and validated through clinical 
research. In October, 1998, NIDCD solicited research grant applications 
to develop and validate these needed intervention strategies. I am 
pleased to report that we are already receiving grant applications in 
response to this year-long solicitation.
    In addition, the NIDCD encourages and supports highly meritorious 
investigator-initiated clinical research. Looking beyond the next few 
years, a key component of expanding clinical research is developing the 
investigators who are rigorously trained to design and conduct these 
important clinical studies. NIDCD has begun several new programs to 
help develop this cadre of new investigators. Following the lead of the 
NIH Director, Harold Varmus, NIDCD launched a new Mentored Patient-
Oriented Research Career Development Award, which provides five years 
of support for young investigators to develop their skills in designing 
and conducting clinical studies and trials. In addition, NIDCD is 
supporting the new Mid-Career Investigator in Patient-Oriented Research 
Award, which provides salary support for mid-career clinical 
investigators to serve as mentors for their junior colleagues, as well 
as support for mid-career individuals to design and conduct clinical 
studies. Finally, NIDCD has created an Otolaryngology Fellow Research 
Training Program within its Division of Intramural Research. These 
fellowships provide competitive salary support for otolaryngologists to 
get 2-5 years of research training in one of NIDCD's outstanding 
intramural laboratories, with at least 75 percent of their time 
protected for research training.
    Question. For the record, please provide a list of the clinical 
research you will support in 1999, and also those clinical research 
projects you intend to support with your fiscal 2000 budget.
    Answer. A listing of fiscal year 1998 clinical research projects 
will be sent under separate cover, as it is too voluminous to print in 
this document. It is not possible at this time of the year to have a 
complete picture of all clinical research projects that will be funded 
in fiscal year 1999. There is still one more Council round (May) for 
which review decisions have not been made for the grant applications 
coming before that Council. And of course, the same is true for fiscal 
year 2000 we do not know what grant applications will successfully 
compete for support.
          national multipurpose research and training centers
    Question. Dr. Battey, I recently wrote to you, expressing my 
concern with the decision to phase-out the National Multipurpose 
Research and Training Centers (RTCs). These Centers not only conduct 
high quality research, but they also serve as training centers for 
medical professionals, as well as provide critical information to the 
general public. If you phase out these Centers, how will NIDCD ensure 
that the important services these Centers provide will continue to help 
deaf citizens, their families, and the medical professionals who care 
for them? I am particularly concerned about the training, continuing 
education and information dissemination components of their mission.
    Answer. The decision not to further extend the RTC awards beyond 
their expiration in August 2000 or August 2001 was reached after much 
deliberation on the part of Institute staff, driven in part by the 
recommendations of the NIDCD Work Group on Single and Multiple Project 
Grants (a group of distinguished scientists from the NIDCD 
constituency) as well as by feedback on their recommendations received 
from the broader scientific community. NIDCD remains committed to 
supporting research training and information dissemination. We have 
concluded that: (1) excellence in each of the four activities supported 
within an RTC is best served by reviewing and supporting each activity 
separately rather than as a composite; (2) research and research 
training being conducted by the RTCs can be supported by other grant 
mechanisms used, or being developed by, the NIDCD; (3) the continuing 
education activities should be supported with resources provided by 
sources other than NIDCD; and (4) that the information dissemination 
activities are important to the mission of the NIDCD, but should be 
supported through an alternative mechanism. We are currently developing 
such a mechanism.
    Scientists and clinicians in institutions that are able to 
demonstrate excellence in one or more, but not necessarily all four 
activities, will be able to compete for support. By expanding the 
number of individuals able to compete for support to conduct these 
important activities, we optimize the likelihood of supporting the very 
best applications NIDCD can receive.
                        extramural construction
    Question. The need for upgraded, state-of-the-art facilities to 
conduct biomedical research is critical. Why does the NIH request 
include only $30 million for extramural construction?
    Answer. The request of $30 million for extramural research 
facilities construction within NCRR is for the same level as was 
appropriated in fiscal year 1999, and underscores the NIH commitment to 
support extramural facilities construction. Competitive construction 
awards provide a ``Good Housekeeping stamp of approval'' for 
institutions which can successfully leverage the NIH award several fold 
with funds provided by private sector donors. Within a 2.1 percent 
increase in the NIH budget in fiscal year 2000, emphasis was placed on 
the support of investigator initiated research to the extent possible.
    Question. Can the research facilities at universities and academic 
health centers accommodate cutting edge health-related research?
    Answer. The latest National Science Foundation report on extramural 
research facilities, submitted to several Congressional Committees in 
March of this year, indicates that approximately 65 percent of 
institutions responding to the survey reported inadequate space for 
research. ``Inadequate research space'' means that either the space 
cannot accommodate sophisticated research, or the space does not exist. 
In addition, this survey found that almost one quarter of the research 
space available was identified as needing major renovation or 
replacement.
    Question. Can universities and other institutions readily identify 
funds for upgrading their research facilities? What is the projected 
need?
    Answer. To meet their current research commitment, the institutions 
performing research in the medical and biological sciences reported 
that they need an additional 18 million square feet of research space, 
or 32 percent more than they currently have. These data come from the 
National Science Foundation survey of universities and are in response 
to a question that asked research institutions to identify optimal 
facility space without any regard to cost. NIH provides approximately 
$2.9 billion annually to these institutions through indirect cost 
payments. A small portion of this supports facility maintenance, 
repair, and replacement.
    Question. How can the NIH reasonably double its budget without a 
substantial increase in the funding for extramural construction?
    Answer. Construction or renovation of extramural research 
facilities is essential if the NIH budget is to be doubled in the near 
future. Without appropriate research space, institutions will be unable 
to perform a greatly increased level of sophisticated research. The 
source of funding for this construction and renovation might be 
institutional funds, loans, state or Federal funding.
    Question. Can you tell us how much of an institution's indirect 
costs are used for construction?
    Answer. At the request of NCRR staff, the National Science 
Foundation undertook a funding analysis of the largest 100 research-
performing institutions in the ``1998 NSF survey of Scientific and 
Engineering Facilities at Colleges and Universities.'' The analysis 
compared the amount of federal facilities and administration 
reimbursement each institution received in 1997 with the amount of 
institutional funds the institution reported allocating to research 
facilities capital projects (new construction and repair/renovation). 
The analysis revealed that the average institutional cost for capital 
projects was $5.3 million and the average institutional Depreciation 
and Use allowance was $1.8 million. In short, the institutions were 
reimbursed about one-third of the cost of capital projects through 
indirect costs.
    Question. Is the setaside for the Centers of Emerging Excellence 
the best way to ensure that the neediest institutions receive 
construction funds?
    Answer. The peer review process ensures that all factors are taken 
into account in determining the most meritorious applications, 
assessing need, quality of research, plans for the proposed facility, 
and potential to expand capacity for research.
    Question. Why should there be a different matching requirement for 
construction grants at the Regional Primate Research Centers?
    Answer. The Regional Primate Research Centers (RPRCs) are national 
resources, much like the national laboratories supported by other 
federal agencies. The RPRCs serve as national resources and accommodate 
investigator needs across the United States. Consequently, there is no 
significant incentive for the host university to provide matching funds 
for state-of-the-art research laboratories to host investigators from 
other academic institutions.
                         shared instrumentation
    Question. Is NIH doing anything to address the need for very 
expensive equipment, for example for high field NMRs, MRIs, (in the 
multimillion dollar range) to conduct state-of-the-art research?
    Answer. In fiscal year 1999, the National Center for Research 
Resources raised the ceiling for research equipment to $500,000 for 
off-the-shelf research equipment requested through the Shared 
Instrumentation program. Nearly half the applications to this program 
in 1999 requested research equipment for which the cost exceeded the 
ceiling of the program. Separately, the NCRR and the National Science 
Foundation established a program four years ago through a Memorandum of 
Understanding to attempt to accommodate applications for high end, 
expensive laboratory equipment. The combined program would provide up 
to $500,000 from each agency. The number of applications has increased 
substantially, underscoring the need for high end equipment. 
Unfortunately, the combined effort of the NCRR and NSF cannot meet 
current needs in this area.
    Question. Won't the relatively low level of funds available for 
shared instrumentation be a limiting factor if NIH should double its 
budget in the next few years? How much research equipment does NIH 
provide through grants and is it enough in your professional judgement?
    Answer. Funding for shared instrumentation is one of the NIH's 
important areas of emphasis, and has received substantial support in 
fiscal year 1999 and the fiscal year 2000 request. If the NIH budget is 
to double in the next few years, and the research conducted is to be 
state of the art, more instrumentation will be required. NIH spends 
only about one percent of research grant funds on instrumentation.
                           science education
    Question. What programs does the NIH support to address the issues 
of attracting more young people, particularly young minority students, 
into biomedical research?
    Answer. The NIH supports a variety of programs designed to attract 
young people into biomedical research. The NCRR supports a Science 
Education program which develops curricula to make science more 
interesting to young students and the general public; many of the early 
projects are now being disseminated around the country. A significant 
number of the student participants belong to minority groups. Many of 
the Institutes at NIH have programs of outreach to local schools in the 
area, bringing in students to perform hands-on research after school 
and in the summers. Many of these students belong to minority groups.
                              synchrotrons
    Question. What is the NIH doing to address the need to increase 
access to synchrotron facilities for macromolecular crystallographic 
studies?
    Answer. The NIH and the Department of Energy are currently engaged 
in discussions of how to address the need to increase access to 
synchrotrons for biomedical researchers. In addition, the NCRR is 
funding more service personnel at synchrotron beamline sites to assist 
naive users and further increase throughput. Efforts are also focusing 
on development of more sophisticated detectors and computational 
algorithms to facilitate data analysis.
              flexible institutional support for research
    Question. I have been hearing from various groups involved with 
biomedical research that there is a grave need for flexible funds that 
can be used by an institution for locally identified needs, such as 
bridge funding, pilot research or shared resources. Such needs used to 
be met through the Biomedical Research Support Grant program, which was 
discontinued in the early 1990's. Why has NIH not reestablished this 
program, particularly with the growth in the NIH budget?
    Answer. The NIH recognizes the benefit of flexible funding, such as 
that which was formerly provided by the Biomedical Research Support 
Grants, for research institutions to utilize for locally identified 
needs, such as pilot studies, bridge support, and shared resources. 
Several mechanisms have been developed that address some of the needs 
formerly met by the BRSG program. Several years ago, the NIH initiated 
the Shannon Grant Award program which provides funds to those 
applicants just below the payline for new research project grants. This 
program provides support for pilot studies to strengthen subsequent 
grant applications. In addition, Institutes and Centers have 
administrative authority to provide bridge funding for those 
investigators with grant renewal applications which just missed the 
payline. This approach allows them to strengthen their amended 
applications. With such mechanisms as these already in place, the need 
for a BRSG program is considerably lessened.
                   general clinical research centers
    Question. Is there any way that the GCRCs can play a role in 
expediting the development of new drugs for the so-called ``orphan 
diseases?''
    Answer. The General Clinical Research Centers (GCRCs) currently 
study many orphan diseases, including the testing of new therapeutics 
for rare disorders. Approximately 20 percent of GCRC research protocols 
focus on orphan diseases.
    Question. What role can the GCRC play in facilitating drug 
development, especially for the biotechnology industry where so much of 
the promising innovation is now occurring?
    Answer. Approximately one-quarter of the GCRC-based 6,000 research 
protocols are for clinical trials. A significant fraction of the agents 
included for testing are from the biotechnology industry. About 10 
percent of GCRC outpatient visits are specifically targeted for 
industry clinical trials.
       national center for complementary and alternative medicine
    Question. How is the new Center for Complementary and Alternative 
Medicine (NCCAM) being organized to ensure that the statutory 
requirements are being met?
    Answer. An organization plan was approved by the Secretary, DHHS on 
February 1, 1999. The NCCAM is organized into: (1) Office of the 
Director; (2) Office of Administrative Operations; (3) Office of 
Legislation, Policy and Analysis; (4) Office of Communications and 
Public Liaison and (5) Division of Extramural Research Training and 
Review. Collectively this plan has provisions for:
    (a) The study of alternative treatment modalities for the purpose 
of integration into the nation's health care delivery system;
    (b) the engagement of scientists with appropriate research 
expertise in CAM for review of grant applications;
    (c) the coordination with other NIH Institutes and Centers as well 
as other federal agencies to ensure appropriate scientific input and 
management of grant, contract and cooperative agreement awards for 
research;
    (d) the evaluation of all major CAM systems, disciplines and 
modalities for which national or state accreditation is available;
    (e) the conduct and support of outcomes research, investigations, 
epidemiological studies, health services research, basic science 
research and clinical trials;
    (f) the formation of a trans-NIH Coordinating Committee composed of 
responsible and responsive liaisons from each Institute and Center to 
facilitate appropriate coordination and scientific input;
    (g) the establishment of a bibliographic database for CAM 
scientific citations worldwide for use by researchers;
    (h) the establishment of a national clearinghouse for public 
dissemination of CAM related information to patients, professionals, 
industry and the general public,
    (i) the establishment and support of multi-purpose research centers 
dedicated to CAM as it relates to a variety of disease conditions.
    A national search is underway for a new Director. It is anticipated 
that a highly qualified candidate will be submitted shortly to the 
Secretary for her final approval.
    A charter has been written for the new National Advisory Council 
for Complementary and Alternative Medicine (NACCAM). A slate of 
nominations for membership, including ad hoc members, has been 
submitted to the Secretary for approval. The NACCAM will have 
membership in which half will include practitioners licensed in one or 
more of the major CAM systems and three individuals representing the 
interests of consumers of CAM. The NACCAM will provide the second level 
review for funding of all applications that have received prior 
technical review.
    Question. What are you doing to ensure that the Center will focus 
on clinical trials?
    Answer. Clinical trials are critical to building the evidence base 
for CAM usage. The recruitment for a Director places great emphasis on 
skills and experience in the planning and conduct of clinical trials. 
Two advisory committees to the Director, NCCAM should have clinical 
trial expertise as well. The National Advisory Council for 
Complementary and Alternative Medicine and the Cancer Advisory Panel 
for Complementary and Alternative Medicine will include individuals 
with clinical trials backgrounds. The development of a portfolio of 
clinical trials is making progress. Several large clinical trials of 
CAM approaches are being supported or have been announced. These 
include: proposals in response to a Request for Proposals seeking a 
clinical trial to test glucosamine either alone or along with 
chondroitin sulfate for the management of osteoarthritis were recently 
reviewed; it is expected that the award will be made this fiscal year. 
A Request for Applications for a trial to evaluate the efficacy of 
Ginkgo biloba in the prevention of both vascular and Alzheimer dementia 
was recently released. It is anticipated that the award for this multi-
site trial will be made in September 1999. Pilot and smaller clinical 
trials are being encouraged through program announcements and in the 
NCCAM Center's program. A Program Announcement for Clinical Trial Pilot 
Grants in Chiropractic and Osteopathy was released in October 1998 and 
will be active for three years. This effort will facilitate the 
collection of data needed for large scale randomized controlled trials 
on manipulation for clinical conditions other than low back pain. Four 
applications in response to this RFA were submitted on February 1, 
1999. In collaboration with NHLBI, NCCAM issued an RFA for Centers in 
ischemic heart disease to investigate nutritional supplements and CAM 
pharmacological agents in the treatment of congestive heart failure and 
coronary heart disease. These applications are currently under review. 
Additional clinical trials are in early planning stages for fiscal year 
2000. These include Saw palmetto for the treatment of benign prostatic 
hyperplasia; garlic for the prevention of cardiovascular disease; 
melatonin for the treatment of insomnia; milk thistle (silybum 
marianum) for the treatment of hepatic diseases; and the effects of 
phytoestrogens on the prevention of cardiovascular disease and the risk 
of cancer in postmenopausal women.
    To facilitate development and efficient conduct of CAM clinical 
trials in cancer, the NCCAM is collaborating with the National Cancer 
Institute (NCI) to develop an advisory committee, the Cancer Advisory 
Panel for Complementary and Alternative Medicine (CAPCAM). The CAPCAM 
will be chartered and will advise the Advisory Council of the NCCAM on 
promising CAM interventions that might be tested in clinical trials. 
The NCCAM, through the NCI has initiated two trials in cancer 
treatment. One is to determine the efficacy of shark cartilage for 
specific types of tumors and the other is on the use of a strict 
nutritional intervention for pancreatic cancer. Additional trials will 
be planned for other CAM interventions for cancer. The CAPCAM will be 
meeting regularly to advise the NCCAM on further promising treatments.
    Question. How many staff are already on board? At what level? Who 
is hiring them? Are you providing any training to them in complementary 
and alternative medicine (CAM)? Will you be providing training to the 
Institute liaisons in CAM?
    Answer. At the present time there are 13 staff permanently assigned 
to NCCAM, at levels ranging from GS-06 for support staff to GS-15. To 
assist with program development during recruitment of permanent staff, 
five experienced NIH staff will join NCCAM on details. Six additional 
permanent staff, including the Director will be hired over the next 
several months, following established NIH personnel procedures. They 
will be selected on the basis of their demonstrated scientific and 
administrative expertise and experience. It is anticipated that many of 
these new staff will already have either CAM research experience or a 
working knowledge of CAM. They will participate in CAM training for all 
staff and Institute liaisons. The Institute liaisons to NCCAM have been 
selected for each Institute based on their knowledge and interest in 
CAM and their management positions within their Institutes and Centers.
    A series of CAM seminars are planned in which established 
investigators knowledgeable in CAM will be invited to speak. These 
seminars will be held regularly and all NIH staff will be notified. A 
CAM cancer interest group, comprising of both intramural and extramural 
scientists from across the NIH has already met. These formal seminars 
and informal meetings of interest groups not only provide training for 
staff, but provide other NIH scientists with information about CAM.
    Question. Will there be an intramural research program with a 
scientific director, labs, and staff? If not, why not?
    Answer. The scope of research activities conducted or supported by 
the new Center will include both intramural and extramural research. 
Intramural research in CAM will be implemented in close coordination 
with the NIH Office of Intramural Research, and the intramural programs 
of the NIH research institutes. The fellowship applicants and their 
projects have been reviewed by the NIH Intramural program. Currently, 
the Center supports three postdoctoral fellows and their research 
projects in intramural laboratories of three Institutes at the NIH. 
Support is provided for the fellows, their research projects and 
ancillary supplies and equipment plus travel to a scientific meeting. 
Topics of these three projects are:
    (1) ``Use of Transcranial Magnetic Stimulation to Facilitate 
Learning in Normal Volunteers and Patients with Neurological 
Disorders,'' in collaboration with the National Institute of 
Neurological Disorders and Stroke.
    (2) ``Mechanisms of Acupuncture and Placebo Analgesia,'' in 
collaboration with the National Institute on Deafness and Other 
Communication Disorders.
    (3) ``Chemokine Inhibitors Found in Folk Remedies from the 
Americas,'' in collaboration with the National Cancer Institute.
    A fourth intramural project for which the NCCAM provides full 
funding is for a senior clinical research fellow. Her topic is 
``Acupuncture and Functional MRI in the Treatment of Alcoholism.''
    Currently, the Acting Director, NCCAM is overseeing the intramural 
program. The new Director of NCCAM will be responsible for further 
development of the intramural program.
    Question. Will you have a field investigations program? If yes, 
what will it look like? If not, why not?
    Answer. The Office of Alternative Medicine has conducted field 
investigations of practice experiences with CAM, but recognized that 
the Centers for Disease Control and Prevention (CDC) has a wealth of 
field investigation experience and expertise in their Epidemiology 
Intelligence Service. Therefore, NCCAM has developed a collaboration 
with the CDC, to develop a program for investigating the practice 
outcomes of selected CAM practices. This is supported by an interagency 
agreement with CDC as it was in fiscal year 1998. Currently two 
different CAM practices have been visited. It is expected that 
additional practices will be visited this fiscal year. Practices for 
these field investigations are identified by an NCCAM practice 
screening and assessment approach that has been used for several years. 
In this program, NCCAM staff will visit practices to evaluate their 
current data for research potential and to assess the ability and 
willingness of these CAM practices to engage in field investigations 
and outcomes data collection. To date, 37 practices have been assessed 
for these factors, for possible future full field investigations.
                                 ______
                                 
            Questions Submitted by Senator Daniel K. Inouye
             waste treatment management by native hawaiians
    Question. What progress has been made in the study of waste 
treatment management to address the unique environmental, public health 
and cultural issues of native Hawaiians?
    Answer. In April 1998, the NIEHS Director, Dr. Kenneth Olden, and a 
staff member attended the Pacific Basin Conference on Hazardous Waste 
held in Honolulu, Hawaii. This is a conference that is sponsored by the 
East-West Center of Honolulu, and is held in a different Pacific Rim 
country every 18 months. The NIEHS has been an active supporter of this 
East-West Center's activities and their conference on hazardous waste 
for the last eight years. The primary goal of these interactions has 
been to seek opportunities to accelerate research on hazardous waste 
management and to apply research results and new technologies to the 
actual hazardous waste problems in Hawaii and Pacific Basin countries. 
While the East-West Center has a strong focus on pollution prevention, 
NIEHS has encouraged the inclusion of environmental health and cultural 
issues in the conferences and other activities.
    They also met with principals from the Bishop Museum's Education 
Department and Strategies Hawaii to discuss the use of the traditional 
cultural waste treatment practices through the ``living machine'' 
processes and to identify opportunities for partnership between NIEHS 
and organizations in Hawaii addressing environmental health issues. 
NIEHS staff identified three possible opportunities for partnership: 
(1) the NIEHS K-12 program; (2) the outreach component of the NIEHS 
Centers; and (3) the outreach component of the NIEHS/EPA Superfund 
Basic Research Program. As a result of this meeting, staff have 
maintained ongoing conversations with Strategies Hawaii regarding the 
``living machine'' process and are providing guidance in applying for 
an upcoming grant opportunity through the NIEHS K-12 program. Based on 
discussions with the State of Hawaii Department of Health (DOH), the 
NIEHS Center at the University of Southern California is now 
collaborating with the DOH to train individuals in exposure assessment. 
Also, discussions with the University of Hawaii suggest that the 
University is considering applying for a NIEHS/EPA Superfund Basic 
Research Program grant. Incorporated in this application would be an 
outreach and education component for addressing the cultural components 
of the treatment of waste.
    Subsequent to the April meeting, NIEHS staff have identified 
another possible mechanism for support of waste treatment management by 
native Hawaiians--the Small Business Innovative Research program. Staff 
have recently been in contact with Strategies Hawaii regarding the 
opportunities that are available in this program.
    Equally as important, as a result of this meeting NIEHS now has 
established contacts within the Bishop Museum, the State DOH and the 
University of Hawaii and consequently is better positioned to provide 
guidance for current and future opportunities.
                  collaboration on telehealth research
    Question. In the fiscal year 1999 appropriations, it was suggested 
that NINR collaborate with Tripler Army Medical Center on the 
application of telehealth technologies to nursing practice. In the 
President's Budget proposal, there is no mention of telehealth 
research. What are NINR's plans for telehealth research and 
collaboration with Tripler Army Medical Center and the HRSA's Office 
for the Advancement of Telehealth? What funding is being allocated for 
this research?
    Answer. Telehealth technology permits nurses and other care 
providers to establish feedback systems between themselves and patients 
while preserving the traditional nursing focus on patients in their own 
environments. As described in NINR's report to the Committee last year 
on telehealth (requested in Senate Report 105-58), telehealth is 
especially appropriate for underserved rural settings, such as those in 
rural areas of Hawaii.
    NINR funding of telehealth research, an estimated $1,410,000 in 
fiscal year 1999, is accomplished once scientifically meritorious 
applications are received. At present, NINR-supported telehealth 
research falls primarily into four categories: (1) telephone 
intervention, in which the telephone call is used to deliver the 
nursing intervention, such as psychosocial support and patient 
education information; (2) home monitoring devices used to transmit 
data electronically to practitioners at a distance; (3) improved and 
expanded telehealth technology and resources; and (4) computer-based 
instructional programs.
    In response to the Committee's interest in increased nursing 
research using telehealth interventions and their application to 
underserved populations, we are exploring a partnership with Tripler 
Army Medical Center in Hawaii to examine issues of relevance to rural 
Hawaiian groups. One promising approach is to identify issues important 
to the health of the Hawaiian population and integrate telehealth 
nursing research interventions to existing telehealth studies 
administered by the medical center.
    NINR staff are also involved in discussions of ways to interface 
with services and opportunities offered by the Office for the 
Advancement of Telehealth at the Health Resources and Services 
Administration. A fruitful collaboration between agencies would enable 
a better coordination of our respective efforts to encourage research 
in telehealth.
                                 ______
                                 
                Questions Submitted by Senator Herb Kohl
                                epilepsy
    Question. I'd like to direct this question to Dr. Fischbach. Last 
year, we discussed the need for more funding for epilepsy research. In 
particular, we focused on the need for research on intractable or 
uncontrolled epilepsy. I have met with families who have children 
suffering from this severe disorder, and they need hope now. With the 
$124 million increase that the National Institutes of Neurological 
Disorders and Stroke (NINDS) will have this year, as well as the 
directive report language included in both the Senate and Omnibus 
Appropriations reports, I think it is clear that Congress intends for 
epilepsy research to be a priority. What specific plans does the NINDS 
have to fund more epilepsy research projects this year? Are there 
already promising areas of research that should be funded immediately?
    Answer. NINDS expects to spend approximately $70.7 million in 
epilepsy research in fiscal year 1999, an increase of $6.9 million over 
fiscal year 1998. The Institute's epilepsy research portfolio is one of 
its largest, representing a full spectrum of research from the 
pathogenesis of the many forms of epilepsy to new medical and surgical 
approaches to treatment.
    We have just held a workshop on the genetics of epilepsy that 
identified several promising directions for future research, and we 
will be following up with new initiatives. Recent findings on seizure 
disorders associated with heterotopias, or abnormal development of 
areas of the brain, have been made possible through improved imaging 
and will be pursued further. We plan to conduct trials relating to 
infantile spasms and trials of drugs in children. It is now clear that 
most intractable epilepsy involves the concerted action of many genes. 
This issue can only be approached by collecting large populations of 
affected families and studying them through consortia and other 
collaborative arrangements.
    Question. What specific plans does the NINDS have to solicit more 
interest and grant applications to research uncontrolled or intractable 
epilepsy?
    Answer. Intractable epilepsy is a major focus of research interest. 
All patients with epilepsy will benefit from improved treatments or 
cures, but the driving force behind our efforts to improve medical and 
surgical treatments is the need to help persons with epilepsy for whom 
current treatments are not effective. We are about to fund two major 
planning grantsone is for a study of intractable seizures in children 
and the other is for a large multi-center trial to assess the benefits 
of early surgery for intractable seizures. We are seeking the 
participation of the small business research community through 
solicitations encouraging development of better animal models for 
studying epilepsy and are also working with the American Epilepsy 
Society and the Epilepsy Foundation of America to encourage new 
investigators to enter the field.
    Better understanding of the various forms of epilepsy has 
contributed to the development of a greater variety of drugs with 
different mechanisms of action, and improvements in imaging and 
surgical techniques are leading to better surgical treatments. We want 
to continue these efforts even more aggressively, with a special focus 
on evaluating drugs for treatment of children. We are committed to 
working with industry to develop new treatments and evaluate existing 
drugs and combinations of drugs in various groups, especially children. 
A major conference on finding a cure for epilepsy, to be held next 
year, will focus special attention on the problem of intractable 
epilepsy.
    Question. I realize that many epilepsy research projects in the 
past have focused on finding new treatments. But what these families 
really need is a cure. How does NINDS intend to meet this need?
    Answer. We share this goal, and we are pleased to announce that 
NINDS will serve as primary sponsor for a White House-initiated 
``Conference on a Cure for Epilepsy'' to be held March 30-31, 2000. 
Initially suggested by First Lady Hillary Rodham Clinton, the 
conference will cover a broad range of science and therapeutic 
opportunities, and will include a patient forum for the presentation 
and discussion of patient insights and concerns. We are excited about 
the prospects for continued progress toward a cure for epilepsy, but it 
is important to pursue this goal through a systematic effort to define 
and understand the many forms of epilepsy, and to take advantage of 
opportunities to develop and improve treatments. A major fiscal year 
2000 initiative will deal with the genetics of epilepsy, beginning with 
the workshop on genetics of epilepsy sponsored by NINDS on March 4-5, 
1999.
    Question. Can you tell me how long it might take before we achieve 
some significant results in treating and curing intractable epilepsy?
    Answer. Predictions about treatments and cures are difficult. The 
term ``intractable epilepsy'' does not describe a single disease but 
several forms of epilepsy affecting specific subgroups of patients. I 
am optimistic that we will see significant progress in specific areas, 
but it is important to remember that epilepsy is a very complex group 
of diseases. The forms that are clearly inherited through the action of 
single genes are quite rare, and the more common forms involve the 
actions and interactions of many genes and external factors. Still, 
unraveling the genetic bases of epilepsy will almost certainly suggest 
new targets for treatment. Modern techniques for drug development and 
improvements in imaging will pay off in terms of new drugs that act on 
disease pathways we cannot target now, and improved ability to localize 
the seizure focus prior to surgery. I think it is safe to say that 
within the next five years we will reduce the proportion of epilepsy 
cases regarded as ``intractable.''
                  alzheimer's disease research at nih
    Question. As you know, approximately 4 million people suffer from 
Alzheimer's disease, including over 100,000 people in Wisconsin. That 
number is expected to increase to over 14 million by the end of the 
next century. American families spend over $100 billion each year on 
Alzheimer's disease, and over half of nursing home patients have 
Alzheimer's or a related disease. Given the tremendous suffering that 
Alzheimer's patients and their families endure, plus the high costs of 
treating Alzheimer's, does NIH plan to spend more resources on 
Alzheimer's disease? What specific steps do you plan to take to ensure 
that Alzheimer's research remains a top priority at NIH?
    Answer. Between fiscal year 1998 and fiscal year 2000, funding for 
Alzheimer's disease has increased by 15 percent across NIH. In response 
to a request from Congress, the NIH has developed a blueprint for 
preventing Alzheimer's disease, the Alzheimer's Disease Prevention 
Initiative. This initiative emphasizes that commitment to Alzheimer's 
research remains a high priority at NIH. It outlines NIH strategies for 
ensuring that progress in understanding the basic biology of 
Alzheimer's disease leads as rapidly as possible to development of 
appropriate interventions, and their eventual testing in clinical 
trials. As an indication of progress, the first NIH-funded trial to try 
to slow or prevent development of Alzheimer's disease is starting in 
March 1999. The initiative also outlines measures to alleviate 
suffering for persons who already have Alzheimer's disease and their 
caregivers. One important aspect of the initiative is cultivation of 
optimal interactions among the NIH, other Federal agencies, the private 
sector, and philanthropic organizations in developing strategies to 
defeat this disease before it exacts an even greater toll on our aging 
population.
                         l-carnitine treatment
    Question. A physician in Appleton, Wisconsin, recently contacted me 
regarding an amino acid treatment--called L-carnitine--that combats 
malnutrition for kidney patients undergoing dialysis. Medicare does not 
cover it in Wisconsin. This physician has had a great deal of success 
with L-carnitine, and believes Medicare should cover it in the future. 
Has the NIH conducted research on L-carnitine to determine its 
effectiveness in combating malnutrition? If so, what findings were 
made? Does NIH have plans to study this further?
    Answer. There is a high mortality rate in the dialysis population, 
and a particularly adverse impact of malnutrition on mortality and 
morbidity in this population. L-carnitine is an amino acid that some 
physicians believe can reverse malnutrition in some patients on 
dialysis, though no controlled clinical trials have been conducted that 
would provide definitive information. L-carnitine is available as an 
intravenous preparation. When prescribed for patients, reimbursement 
for this treatment is not uniform from state to state. The Health Care 
Financing Administration has left reimbursement decisions to the 
discretion of the local Medicare carriers. Therefore, some carriers, 
with appropriate justification from the physician, pay for its use. 
Others, such as the carrier in Wisconsin, will not pay for it, even 
with justification.
    Currently, there is inadequate data on nutrition in dialysis 
patients. This is an important area for research since malnutrition is 
a major cause of mortality and morbidity in dialysis patients. The 
NIDDK will be investigating this issue as part of a new initiative 
planned for the future. The initiative will deal with nutritional 
intervention in dialysis patients to improve morbidity and mortality; 
L-carnitine may be a supplement.

                          subcommittee recess

    Senator Specter. The subcommittee will stand in recess to 
reconvene at 9:30 a.m., Wednesday, March 3 in room SD-138. At 
that time we will hear testimony from the Honorable Richard 
Riley, the Secretary of Education.
    [Whereupon, at 11:28 a.m., Tuesday, February 23, the 
subcommittee was recessed, to reconvene at 9:30 a.m., 
Wednesday, March 3.]


  DEPARTMENTS OF LABOR, HEALTH AND HUMAN SERVICES, AND EDUCATION, AND 
          RELATED AGENCIES APPROPRIATIONS FOR FISCAL YEAR 2000

                              ----------                              


                        WEDNESDAY, MARCH 3, 1999

                                       U.S. Senate,
           Subcommittee of the Committee on Appropriations,
                                                    Washington, DC.
    The subcommittee met at 9:30 a.m., in room SD-138, Dirksen 
Senate Office Building, Hon. Arlen Specter (chairman) 
presiding.
    Present: Senators Specter, Cochran, Gregg, Stevens, Kyl, 
Harkin, Kohl, Murray, and Feinstein.

                        DEPARTMENT OF EDUCATION

                        Office of the Secretary

STATEMENT OF HON. RICHARD W. RILEY, SECRETARY
ACCOMPANIED BY:
        MIKE SMITH, ACTING DEPUTY SECRETARY
        TOM SKELLY, DIRECTOR, BUDGET SERVICE

               opening statement of senator arlen specter

    Senator Specter. Good morning, ladies and gentlemen. We 
will commence this hearing for the subcommittee on Labor, 
Health Human Services, and Education. And this morning we have 
the distinguished Secretary of Education, Richard Riley, and we 
welcome you back, Mr. Secretary.

             discretionary budget request and spending caps

    The Department of Education has a discretionary budget this 
year totaling some $34.7 billion which is an increase of $1.2 
billion, or 3.7 percent. My very able staff has prepared 
charts, Mr. Secretary, which shows some $18 billion in offsets 
which I think lack a sense of reality, and the subcommittee is 
going to be faced with some very tough choices with respect to 
allocation of funds--really disregarding those $18 billion in 
offsets which will require some $2.7 billion in cuts from the 
subcommittee. That is on top of the very difficult problems we 
face looking for an increase in funding for the National 
Institutes of Health and the problems with funding education on 
so many key points. So we would appreciate your advice as to 
where you would look for pro rata cuts on education without the 
projected $18 billion in savings.
    The issue of the caps is always a complicated one. And if 
the President chooses to take a leadership role to urge the 
raising of the caps, that would be one thing. But in the 
absence there, we are going to be facing very, very tight 
budget constraints.
    Without objection, my full statement will be made a part of 
the record. We have the honor of having the chairman of the 
full committee here this morning.
    Senator Stevens, would you care to make an opening comment 
or two.

                opening statement of Senator Ted Stevens

    Senator Stevens. I do. I thank you very much, and I do 
welcome the Secretary, an old friend here.
    Mr. Chairman, I have my own defense hearing this morning. I 
just have a couple of things to talk to you about, Mr. 
Secretary, and I would like to put some direct questions in the 
record on these.

              fetal alcohol syndrome and special education

    I was surprised to find out last fall when I had an 
education conference in Alaska with our commissioner and many 
of the people involved in PTA's and parents and the school 
districts of our State that because of the rising rates of 
fetal alcohol syndrome and fetal alcohol effect in our State, 
special education has taken on special meaning.
    An estimated 25 percent of our students in our largest 
school district that are really special ed students. I do not 
think anyone has those statistics that we now face. And I would 
like to ask our Alaska Education Commissioner to convene a 
statewide task force to develop a pilot project for our State 
that would cut through the redtape and see if we could become a 
test bed for systems to deal with this problem.
    The problem is not just dealing with special ed, but also 
it is the medical problem of trying to see if it is possible 
through education and health techniques to reverse those 
effects.
    My question that I have asked you in these items I am going 
to put in the record is whether or not you would cooperate with 
us and see if the Department--your department is willing to 
make Alaska into a test bed for that type of special education. 
I do not need an answer now. I am just making an opening 
statement. I do not want to take too long.

           integrating education and health distance learning

    One other one is that we have established a telehealth or 
telemedicine initiative in our State. We have the cooperation 
of all of the Federal agencies. We are going to have a 
statewide telehealth plan that merges Federal, State, and local 
efforts to use the initiatives that we can with 
telecommunications to provide better health care at lower cost.
    We now see that a similar problem exists with regard to 
education. And we want to move on, as we develop the 
telemedicine, telehealth approach, to see if we can develop and 
coordinate a statewide tele-education approach.
    There again, we now have the State working with my office 
and we have the University of Alaska, which is the State 
university, working with us. We would like to develop a 
statewide plan and eventually merge the telecommunications 
concepts of health and education.
    I would like to see if your department would be willing to 
work on distance learning concepts that integrate with other 
concepts such as health.

            brain development and early childhood education

    Last, we have been working with the ``Decade of the Brain'' 
people, and one of the things that has really made an impact on 
me is early brain development and the importance of some types 
of stimulation for young children from birth through 3 years.
    It is, as one of them said in a construction analogy, the 
brain builds a small foundation or a big one in that time. And 
we believe that there should be something that we put into 
effect dealing with parenting education and preparing parents 
for what they must do in those first 3 years in order to 
stimulate those brains so that they will, in fact, be receptive 
to the education techniques such as those in Healthy Start and 
Head Start.
    I would like to talk to you and see if you and Secretary 
Shalala would cooperate with us to, again, develop a pilot 
project--it need not be in Alaska, but I hope it would be--but 
to try and see if we can develop the techniques for parenting 
education, to prepare parents for the job they must complete 
during those first 3 years.

                         fetal alcohol syndrome

    I have taken too much of my time. I look forward to talking 
to you about these questions I am going to put in the record. I 
think particularly the fetal alcohol syndrome, Dick, is the 
worst thing I have run into in my life. I cannot tell you how 
much it saddens me to see those statistics come into our State, 
and we must find some way to reverse that in the future.
    But right now we are dealing with the present and the 
statistics are just overwhelming right now. I look forward to 
talking to you about it and thank you very much. Thank you, Mr. 
Chairman.
    Senator Specter. Thank you, Senator Stevens. Senator 
Harkin, distinguished ranking member.

                opening statement of senator Tom Harkin

    Senator Harkin. Thank you very much, Mr. Chairman. I am 
pleased to join you and the members of the committee in 
welcoming Secretary Riley back to the subcommittee and look 
forward to our discussion about the fiscal year 2000 budget for 
the Department of Education.
    Before I do that, I was just reviewing with my staff over 
the last few days sort of the past, where we have been in the 
past, where we are now, and looking at the budget for next 
year. And I just was thinking about where we were.

                       good news about education

    For years the only news we got concerning education was bad 
news. Test scores were falling, student loan defaults were 
rising, confidence in American education was badly shaken. For 
the first time in a long time we are beginning to see 
significant reversals in these troubling areas.
    After declining for years, reading scores are beginning to 
improve. On a recent international test, U.S. 4th graders 
outperformed their peers from all other nations except one, 
Finland.
    A decade ago spiraling student loan defaults were 
threatening the existence of the student loan program. That 
default rate has been cut by more than a half. It now stands at 
less than 10 percent. It is still too high, but what a heck of 
an improvement.
    Finally, we are beginning to see evidence, Mr. Secretary, 
that reforms made to the Title I program in 1994, reforms that 
were undertaken with your leadership, are now beginning to show 
very positive results.
    Mr. Secretary, I know you to be a modest person. But, in 
the words of my teenage daughter, I think your stewardship of 
this Department has been awesome, just simply awesome.
    And so I just want to compliment you and tell you that I 
just think you have done a great job. You should be rightly 
proud of the role that you have played in achieving these 
results that I just talked about.

                     education--a life long process

    I know that, Mr. Secretary, in my conversations with you 
that we do share a view that education is a lifetime process. 
It is not something that begins at one point and ends at one 
point. But, in fact, it begins at birth and continues for our 
entire lifetimes.
    There are provisions in the President's 2000 budget which 
make that clear. I applaud the additional investments in early 
intervention programs for children with disabilities and 
enhanced commitment to adult education.

                          esea reauthorization

    As we proceed later on in this year with the 
reauthorization--I sit on the authorizing committee with the 
Elementary and Secondary Education Act reauthorization--I am 
wondering if we might not want to revisit what the definition 
of elementary education is. Maybe it should start before 
kindergarten.
    Maybe we ought to just break out of the mold and think 
about early elementary education and secondary education. I 
just bring that out because I just want you to know some of the 
things I will be looking at in terms of the reauthorization 
process.

                 fiscal resources needed for education

    Now, I must admit, however, I think we are going to have to 
do something with this education. The amount of money that is 
in this budget this year, the 3.7-percent increase is a great 
blow compared to the 12-percent increase we had last year.
    And I believe we are going to have to do something to get 
money in here. I say that with the chairman--he has already 
left. The full chairman of the committee was here. We need more 
allocations to this subcommittee if we are going to meet the 
obligations that we have out there.
    So I just want to make those points to Mr. Chairman. We 
have worked on a bipartisan basis to provide some historic 
increases for education. And these increases were possible 
because we all worked together on this. We made these 
significant investments. So I hope we do not back down now.
    I will be having more to say later on about the trade-off 
between the budget that the President sent down to us. I notice 
that there is, over the next 5 years, a proposal to increase 
defense spending $112 billion--$112 billion. Now that is an 
interesting number, Mr. Chairman, because that is exactly the 
same number the experts tell us that we need to rebuild and 
remodel our crumbling schools all across America, the exact 
same number.
    I believe in a strong defense, but I believe in a 
commonsense defense. And I think there is going to have to be 
some trade-offs here about really what is most important for 
the security of our Nation in the future. So with the walls 
down--these fire walls down, I think we are going to have to 
take a look at maybe cutting down on one and building up on the 
other.

                           prepared statement

    With that, I will yield my time. Thank you very much, Mr. 
Secretary. Again, I applaud you for what you have done. You 
have done a great job.
    Senator Specter. Thank you very much, Senator Harkin.
    [The statement follows:]
                Prepared Statement of Senator Tom Harkin
    Mr. Chairman, I am pleased to join you in welcoming Secretary Riley 
to the subcommittee and look forward to our discussion about the fiscal 
year 2000 budget for the Department of Education.
    I have been around here a long time. I've seen Secretaries come, 
and I've seen them go. But no one can match the dedication and 
leadership we have from the present Secretary of Education. Secretary 
Riley, you have done an outstanding job.
    For years, the only news we got concerning education was bad news. 
Test scores were falling. Student loan defaults were rising. And 
confidence in American education was badly shaken.
    For the first time in a long time, we are beginning to see 
significant reversals in those troubling trends.
  --After declining for years, reading scores have begun to improve and 
        U.S. 4th graders outperformed their peers from all other 
        nations on a recent international assessment, except one 
        [Finland].
  --A decade ago, spiraling student loan defaults were threatening the 
        existence of the student loan program. That rate has been cut 
        by more than half and now stands at less than 10 percent. Still 
        too high, but a dramatic improvement.
  --Finally, we are beginning to see evidence that reforms made to the 
        Title I program in 1994, reforms that were undertaken with your 
        leadership, are beginning to show results.
    I don't mean to suggest that you have accomplished all of this 
single-handedly, but you have played an important role for the past 6 
years.
    Mr. Secretary, you have been a relentless advocate for American 
education and our nation's children and are to be commended for your 
strong leadership.
    We share an important view, that education is a process that begins 
at birth and must continue for our lifetimes. There are provisions in 
the President's fiscal year 2000 budget which make that clear. I 
applaud the additional investments in early intervention programs for 
children with disabilities and the enhanced commitment to adult 
education.
    Over the years, I have been impressed with the strong education 
budgets from the Clinton Administration. But, I must tell you, I am, 
quite frankly, disappointed by this year's budget for education.
    You are recommending a $1.2 billion increase in education over last 
year--an increase of only 3.7 percent. That is in sharp contrast to the 
12 percent increase of last year.
    I clearly understand the pressure facing the Administration in 
putting this year's budget together. The constraints placed on 
discretionary spending are very tight. As a result, the fiscal year 
2000 budget provides a very modest increase for education. In my view, 
too modest.
    Unfortunately, education was shortchanged in order to provide a $12 
billion increase in Pentagon spending next year and an increase of $112 
billion over the next 6 years. I can't help but be struck by the irony 
of that figure--$112 billion--because that is precisely the amount of 
money GAO tells us we need to modernize our nation's crumbling schools.
    While I appreciate the investments in early intervention programs 
for children with disabilities, I am, however very disappointed that 
there is no increase for the special education grants to states. We are 
fulfilling only one quarter of the goal we set in 1975 and I would like 
to see continued improvement in funding for special education. We need 
to redouble our bipartisan efforts to help school districts meet their 
obligation to educate students with disabilities.
    I don't want to go through every line of the budget, but want to 
note one other major concern about the relatively small increase for 
the second installment in the plan to hire 100,000 new teachers. I hope 
we can reauthorize this program and also work to increase funding for 
the upcoming year.
    Mr. Chairman, over the past few years, we have worked, on a 
bipartisan basis to provide historic increases for education. Those 
increases were possible because we were first challenged, by you, Mr. 
Secretary to make significant investments in the education of our 
children and we responded.
    But we must not lose sight of the fact that a strong budget for 
education from your end of Pennsylvania Avenue has made it possible for 
those of us at this end to provide those historic increases.
    Mr. Secretary, I look forward to your testimony today and look 
forward to working with you, Chairman Specter, and other members of the 
subcommittee to fashion a budget for education which truly makes 
education our nation's top priority.

 prepared statements of Senator Robert C. Byrd and Senator Larry Craig

    Senator Specter. We have received prepared statements from 
Senator Byrd and Senator Craig which will be inserted into the 
record at this point.
    [The statements follow:]
              Prepared Statement of Senator Robert C. Byrd
    Mr. Chairman, Senator Harkin, thank you for holding this hearing 
today to discuss the Department of Education budget for fiscal year 
2000. I extend my appreciation to both of you for all of your hard work 
and commitment in the area of education.
    Although I am not a member of this subcommittee, I am extremely 
committed to the notion of lifelong learning, and I am deeply troubled 
by our nation's ailing public education system. I appreciate the 
Subcommittee's graciousness in permitting me to speak briefly.
    Mr. Secretary, I welcome you today. With the Elementary and 
Secondary Education Act reauthorization looming in the months ahead, I 
would like to raise an issue of great concern to me, which is shared by 
many parents nationwide--that is, education accountability. I find it 
ironic that in an age where a wealth of information abounds about any 
imaginable field, precious little information exists about the 
performance of our nation's schools.
    Education Week, in partnership with two public opinion research 
firms, recently published an issue entitled ``Reporting Results'' that 
discusses this new buzzword of 1999--accountability. While I find 
encouraging the fact, as reported in Education Week, that thirty-six 
states are expected to issue school accountability data or ``report 
cards'' this year, that practice, it seems to me, should be undertaken 
by all fifty states.
    Furthermore, of the thirty-six states that will have report cards 
in 1999, only thirteen states ensure that the report cards actually get 
sent home to parents and few include all the information that parents 
actually want to see most. Moreover, the information they provide 
rarely finds its way to the community at large which has an interest in 
the education of its young people. I am baffled by this phenomenon! Why 
go through the process of creating such a document for it to end up as 
yet another soiled piece of paper in the garbage can?
    Of all the decisions in life that a parent has to make, the 
decision about where to send a child to school is perhaps one of the 
most difficult and time-consuming. And I find it unbelievable to think 
that parents often, for the lack of better information, rely upon word-
of-mouth to make such important decisions. Where are the numbers on 
student achievement, test scores, teacher certification, and graduation 
rates? Parents need to have this information before them as a key 
resource for making an informed decision.
    I feel for parents who, despite their best efforts to learn about 
the quality of their local schools, cross their fingers as they send 
their children off each day in the hope that their children will be 
spending those hours in an enriching and safe environment. I find it 
terribly disconcerting that the quality of our schools in different 
corners of the same community can differ so dramatically as to force 
families to move from neighborhood to neighborhood on the trail of the 
best schools. I find it appalling that so many families have felt 
forced to give up on public schools in favor of private schools and 
home schooling.
    Mr. Secretary, I believe that more information about education is 
the key to unlocking this trend burdening so many families today. With 
more information, and I am talking about the real stuff--test scores, 
teacher qualifications, graduation rates, tracking of students from 
grade school into college and after--parents will have substantive data 
at their fingertips to truly determine what is in the best interest of 
their child and family as a whole.
    Competition is at the heart of creating better schools for the 
nation.
    By forcing schools to annually report on performance data, such as 
test scores and other quantitative measures, teacher qualifications, 
and safety indicators, parents will have a framework for weighing one 
school against another, and communities will have data they need to 
achieve improvements in their school systems. As Education Week pointed 
out in its report, so many of the report cards that actually make their 
way into a parents' hands are difficult to read, with extraneous 
information of little benefit to educators and parents. Mr. Secretary, 
there needs to be uniformity in gathering key data that parents are 
seeking and a model that all parents can follow. Holding schools 
accountable for the students they are producing and the teachers they 
have chosen, while making this information readily available to 
parents, will turn up the heat on schools, and apply much long-needed 
pressure to those at the helm to focus on teacher qualifications and 
curriculum requirements.
    But test scores and other achievement data will mean little to 
parents if we continue this so-called trend of ``teaching to the 
test.'' What good will come of teaching students skills simply to ace a 
standardized test? In 1984, I established what was later named the 
Robert C. Byrd Honors Scholarship to recognize and reward high school 
seniors with excellent academic records. My intention was, and remains, 
to single out those select students who thrive on learning for 
learning's sake alone, not simply for an ``A'' letter grade. Mr. 
Secretary, if we hope to produce well-rounded students prepared for the 
challenges ahead in today's workforce, schools must begin to test drive 
the curriculum and stop allowing the curriculum to drive the test.
    Education accountability is just one area of education that I hope 
the Subcommittee, the authorizing committee, and the Administration 
will look at seriously during the Elementary and Secondary Act 
reauthorization. I thank the Chairman for giving me this opportunity to 
speak and I look forward to a successful appropriations process for 
fiscal year 2000. I would like to follow my statement with a few 
questions for the Secretary. I then request that the remainder of my 
questions be submitted for the Record.
                                 ______
                                 
              Prepared Statement of Senator Larry E. Craig
    Mr. Chairman, I thank you for holding this hearing today. Education 
is one of our nation's top priorities and should be a focus of 
everyone's attention. While there are many issues I could discuss 
today, I want to address one in particular--impact aid.
    Impact aid is a recurring issue. It seems that every year the 
President proposes to slash and weaken the impact aid budget, while 
Congress recognizes the importance of it and works to strengthen it. 
Again, the Clinton Administration has chosen to make detrimental 
changes to the impact aid program.
    Those of us who live in the West are all too familiar with the 
impact that the federal government has on our lives. When the federal 
government owns over sixty percent of the land, such as my home state 
of Idaho, it can't help but affect individual lives and the local 
economy. However, the President seems to believe that only individuals 
who live and work on federal lands impact local schools. This could not 
be further from the truth.
    Schools receive a large portion of their funding from local 
property taxes. When land is removed from the tax base, this affects 
not only the schools but local governments. To compensate for this, 
schools must either raise taxes or decrease services. Both of these are 
unacceptable answers. The federal government should be a good neighbor, 
which is exactly why the impact aid program was created. To shift its 
focus away from the impact of federal lands and facilities and to cut 
its funding is just plain wrong.
    As we work through the budget and appropriate money for fiscal year 
2000, I hope that we will consider raising the funding for impact aid 
to a minimum of $864 million, the amount for fiscal year 1999 and 
ensure that local schools receive funding for both ``a'' and ``b'' 
students and for federal lands which erode the local tax base.
    Again, thank you, Mr. Chairman, for holding this hearing today. I 
look forward to working with you and the rest of the committee as we 
craft the fiscal year 2000 budget for the Department of Education.

               summary statement of Hon. Richard W. Riley

    Senator Specter. Frequently we will have opening 
statements, but you have drawn such a crowd this morning, Mr. 
Secretary, eight members here at this hour that we are going to 
reserve the portion of the opening statements to the rounds of 
questioning and go directly to your testimony.
    Thank you for joining us and we look forward to your 
statement. Your full statement will be made a part of the 
record, Secretary Riley. So to the extent you can summarize, 
leaving maximum time for questions and answers, we would 
appreciate it.
    Secretary Riley. That is fine. Thank you, sir, if you would 
do that. I have Mike Smith with me, the Acting Deputy 
Secretary, and Tom Skelly, the Director of Budget Service.
    I want to begin by thanking you, Mr. Chairman, Senator 
Harkin, and all the members of this committee for your strong 
support of education over the years. I appreciate your 
statement and I appreciate the inquiries of Senator Stevens.
    I think together, working together, we are beginning to 
make the investments that are needed to prepare all Americans 
for this exciting, challenging future. And, if I might, let me 
cite a few, very briefly.

                    raising standards and goals 2000

    First, raising standards. And I am strong on standards, as 
you know, one of the most important parts of any improvement 
effort. With the help of Goals 2000, 48 states have developed 
more challenging State standards and two other States have 
encouraged rigorous development of locally developed standards.
    The General Accounting Office recently reported that State 
officials--this is State officials--were asked about that and 
they said this about Goals 2000: A significant factor in 
promoting their educational reform efforts. They are very 
positive about it, and I think that has stood well.

                        america reads challenge

    Second, as a result of the President's American Reads 
Challenge, over 21,000 college students in the Federal Work-
Study Program are tutoring youngsters in reading. Their work, 
along with the improvements that we have made in Title I, will 
build on progress that we are making in reading.

                          reading improvement

    The latest NAEP study found that reading scores, as was 
pointed out, reversed their decline and rose in all three 
grades tested between 1994 and 1998. And that is the first time 
all three grades--4th, 8th and 12th--showed improvement in 30 
years.
    The additional resources that we are asking for the Reading 
Excellence Act, and the additional changes that we are 
proposing in Title I will help keep moving us in that 
direction. It is the right direction to go.

                  access to computers and the internet

    Third, the Federal Government is playing a key role in 
helping all children have access to computers and the Internet 
in all schools. The E-rate discounts are critical to reaching 
our goal of connecting every classroom to the information 
superhighway.
    A recent report showed some 89 percent of the schools are 
connected. That is the first stage. Some 51 percent of 
classrooms are connected and that is up from 14 percent just 
several months ago.
    Federal resources account for 25 to 30 percent of all the 
money that we spend on educational technology in our schools. 
And I think we need to be certain not to lose that 
technological edge. That is why we have $450 million in our 
technology budget request, an increase of $25 million. And I 
think that is so important to help pay for hardware, and 
educational software, and to train teachers to use technology 
in the classroom.
    And, finally, in higher education, the new Hope and 
Lifetime Learning tax credits will give 12.7 million students 
and their families--12.7 million--this year, over $7 million to 
help them pay for college expenses.

               pell grant and work-study budget increases

    These tax credits, along with our request for a $125 
increase in the maximum Pell Grant award and a $64 million 
increase in the Work-Study program, will open the doors for 
college even wider.

                           gear up initiative

    We also seek to double the funding to $240 million for the 
exciting GEAR UP initiative. GEAR UP will provide mentoring, 
tutoring and career counseling for about 381,000 students in 
nearly 1,000 high-poverty middle schools--and, Mr. Chairman, I 
appreciate your strong support for that initiative. By 
investing in education and working to lift the burden of debt 
from our children and grandchildren, we have kept faith, I 
think, with future generations.

          elementary and secondary education programs requests

    In addition to the initiatives that I have mentioned, this 
budget would help end social promotion, help turn around low-
performing schools, reduce class size, modernize schools, raise 
the quality of teaching, expand after-school programs, help 
improve literacy, accelerate the public charter school movement 
and help new Americans learn English.

           esea reauthorization--strengthening accountability

    As President Clinton has stated, strengthening 
accountability will be a key focus of our efforts to 
reauthorize the Elementary and Secondary Education Act this 
year. The President's budget backs this effort with increases 
in two areas.

                after-school and summer school programs

    First, to help end social promotion. We are asking for $600 
million for after-school and summer school programs to help 
children catch up academically. Social promotion simply does 
not work, but holding children back will not work either. We 
must help children make the grade and this proposal which 
triples last year's request will expand learning opportunities 
for over 1.1 million students.

                   title i accountability provisions

    Second, the request for Title I grants contains $200 
million to turnaround low performing schools, to help turn them 
around. Contrary to what some people say, we do not think it 
expands Federal control. We simply want to press for the 
implementation of Title I accountability provisions that the 
Congress put in the ESEA authorization several years ago.

            comprehensive school reform and charter schools

    We are also requesting $175 million for the Comprehensive 
School Reform Demonstration program. We are calling for $130 
million for public charter schools, an increase of $30 million, 
to support up to 2,200 charter schools. There was only one 
charter school in America when the President took office. And 
public charter schools give parents real choice with 
accountability and without bleeding public schools of vital 
funds.

                    class size reduction initiative

    Another major emphasis in the budget is better teaching. It 
contains the second installment of our initiative to recruit 
and prepare 100,000 good new teachers in order to help reduce 
class size in grades one through three to a nationwide average 
of 18. The request includes $1.4 billion to hire 38,000 more 
teachers in the second year of the 7-year program.
    The President has asked the Senate to authorize $11.4 
billion to hire the full complement of 100,000 teachers in the 
next 6 years, and I urge the Senate to take this step to assure 
communities that Congress will provide this continued support.

                     school construction incentives

    Even though it is not part of our discretionary request, I 
want to highlight the school construction and modernization tax 
incentive. Teaching and learning suffer in schools that are in 
disrepair, that are overcrowded, that are so old they cannot 
accommodate new technology. And the President's proposal would 
support almost $25 billion in interest-free bonds to repair, 
build or modernize some 6,000 schools.

        professional development--bilingual and indian education

    The budget also includes $115 million, an increase of $40 
million, to help, among other things, to reduce shortages of 
qualified teachers in high-poverty school districts.
    A $25 million increase for Bilingual Education Professional 
Development will help address the shortage of good bilingual 
and English-as-a-second-language teachers, and $10 million for 
an American Indian Teacher Corps Initiative program would 
recruit and train a thousand new Indian teachers over the next 
5 years to work in Native American communities.

              esea reauthorization consolidation proposal

    Even though ESEA reauthorization does not come under this 
budget, the members here should know that our proposal will 
include an initiative to improve teaching and put high 
standards to work in the classroom. This initiative calls for 
building on and consolidating the current Goals 2000, Title II 
Eisenhower program, and Title VI Innovative Education 
Strategies State Grants program.

                       safe and drug-free schools

    In the critically important area of school safety, our $439 
million request for Safe and Drug-Free Schools State grants 
would target larger grants to school districts with the most 
severe problems by requiring States to distribute 30 percent of 
their allocations as competitive grants to those of the 
neediest areas.

          drug and violence prevention coordinator initiative

    We also propose $50 million, an increase of $15 million, to 
pay for 1,300 antidrug coordinators for 6,500 middle schools.

                            adult education

    And, finally, the President's budget includes significant 
increases for programs to help adult Americans to master 
literacy and other basic skills. Adult education State grants 
would increase by $123 million, or 28 percent, to expand 
programs to help immigrant and limited English proficient 
adults learn English.
    I have quoted, Mr. Chairman, John Stanford before. He was a 
brilliant superintendent of Seattle who passed away and left 
such a mark in that city bringing people together for 
education. I have never seen anybody so effective. He died 
recently as you know. Senator Gorton who was here, of course, 
is very familiar with him also.

                           prepared statement

    John had this saying, and I close with it, ``The victory,'' 
he says, ``is in the classroom.'' I think we have done a good 
job with standards, in getting the States involved in standards 
in a big way. But standards must move into the classroom in 
order to make a big difference.
    I believe that this budget will go a long way toward giving 
us that kind of victory in the classroom that John Stanford 
talked about.
    Thank you very much for giving me the chance to make this 
statement.
    Senator Specter. Thank you very much, Mr. Secretary.
    [The statement follows:]
              Prepared Statement of Hon. Richard W. Riley
    Mr. Chairman and members of the subcommittee: I am pleased to have 
this opportunity to talk about President Clinton's fiscal year 2000 
budget request for the Department of Education. I want to begin by 
thanking you, Mr. Chairman, as well as other Members of this 
Subcommittee, for your strong support of education over the past 
several years. Together I think we have made real progress in making 
the kind of investments in education needed to help prepare all 
Americans for the challenges we face in the new century that lies just 
around the corner.
    In particular, our joint effort to help States and communities to 
set academic standards for all children has been a tremendous success. 
With the help of programs like Goals 2000, 48 States have developed 
state-level standards, and two States have pushed for standards at the 
local level. I believe the effort to raise standards has much to do 
with the positive results of the latest reading scores on the National 
Assessment of Educational Progress (NAEP).
    In 1998, the national scores in the NAEP reading assessment 
increased at all three grades tested--4, 8, and 12--for the first time. 
And unlike 4 years ago, when some States were losing ground, the 1998 
NAEP state-level results for reading showed that no State fell further 
behind, while 10 States showed solid progress. I believe these latest 
NAEP results show we are on the right track in improving educational 
achievement in America.
    I remain concerned, however, that this progress has been uneven, 
particularly in high-poverty schools. The President's 2000 budget for 
education is designed to improve student achievement by accelerating 
change and increasing accountability based on these State and local 
standards.
    The President's request would help end social promotion, reduce 
class size, modernize schools, raise the quality of teaching, improve 
literacy and help new Americans learn English, and provide new pathways 
to college for disadvantaged students.
              school construction and class-size reduction
    Before I describe our discretionary request, I want to highlight 
the School Construction and Modernization tax incentive, which the 
President is proposing for the third year in a row. Students cannot 
learn--and teachers cannot teach--to high standards in falling down, 
overcrowded classrooms. The President's proposal would support almost 
$25 billion in interest-free bonds to help build or modernize up to 
6,000 schools.
    Modernizing classrooms--and building more of them--goes hand-in-
hand with the Class-Size Reduction program launched just last fall. The 
goal is to recruit and train 100,000 new teachers to help school 
districts reduce class sizes in grades 1-3 to a nationwide average of 
just 18 students. The 2000 request includes $1.4 billion to help school 
districts hire a total of 38,000 teachers in the second year of the 
program, an increase of 8,000 over the 1999 level. There's no better 
way to rapidly improve student achievement than to put highly trained 
teachers into small classes where they can provide the individual 
attention students need to reach high standards.
    The budget also provides $461 million for Goals 2000 State grants 
to help some 5,000 school districts continue standards-based reform 
efforts. I should note here that a recent report from the General 
Accounting Office found that State officials considered Goals 2000 to 
be a ``catalyst'' and ``a significant factor in promoting their 
education reform efforts.'' That is exactly what we hoped for when we 
worked with Congress to create this program 5 years ago, so I am happy 
to see that it is working as intended.
    Another catalyst for change in our schools is technology. Our 
request includes $450 million for the Technology Literacy Challenge 
Fund, an increase of $25 million to help pay for hardware, train 
teachers to use technology in the classroom, and develop and buy 
educational software.
                        improving accountability
    As you heard in the State of the Union Address, strengthening 
accountability will be a key focus of our efforts to reauthorize the 
Elementary and Secondary Education Act (ESEA) over the coming year. The 
President's budget backs this effort with major increases in two areas.
    First, to help end the practice of social promotion, we are asking 
for $600 million for 21st Century Community Learning Centers, an 
increase of $400 million to help some 2,000 additional school districts 
create or expand after-school and summer programs that can help 
students catch up academically. This request would serve approximately 
1.1 million students of the estimated 15 million school-aged children 
who go home alone after school each day. In places like Chicago, after-
school programs have helped to end social promotion by strengthening 
academic achievement, and not by retaining students in grade.
    Second, the request for Title I Grants to Local Educational 
Agencies contains $200 million to help turn around failing schools. 
Contrary to several reports that I have seen in the news media, our 
goal here is not to expand Federal control over local schools, but to 
help States and school districts implement the Title I accountability 
provisions established by Congress during the last ESEA 
reauthorization.
    One of the best ways to bring about real change and turn around 
failing schools is through research-based reforms. That is why our 
request includes $175 million for the Comprehensive School Reform 
Demonstrations program, an increase of $30 million to help an 
additional 560 schools carry out research-based school improvement. We 
would also increase funding for educational research by $45 million, 
for a total of $109 million, to help meet the growing need for 
research-based information on what works in education. The research 
request includes $25 million to continue an interagency effort--
involving the National Science Foundation and the National Institute of 
Child Health and Human Development--that will focus on using technology 
to improve school readiness, K-3 instructional practices, and K-12 
teacher preparation in the areas of reading and mathematics.
    The charter school movement continues to bring together teachers, 
parents, and community leaders to reinvent public schools and turn 
around lagging student achievement. The budget provides $130 million 
for Charter Schools, an increase of $30 million, to support up to 2,200 
new or redesigned schools that offer innovative approaches in exchange 
for greater accountability for student achievement.
    The 2000 request also continues support for mastering the basics, 
including $8 billion for Title I Grants to Local Educational Agencies 
and $286 million for the 2nd year of the new Reading Excellence 
program, which helps all children to read well and independently by the 
end of the third grade. A new $50 million Special Education Primary 
Education Intervention program would help school districts meet the 
needs of children aged 5 through 9 who have marked difficulty learning 
to read or who have behavioral problems. The budget also would double 
funds for improving writing skills to $14 million, while providing $6.7 
million for America Counts, a new initiative to ensure that middle 
school students master the fundamentals of algebra and geometry.
                    better teaching for all students
    Another major emphasis in the 2000 budget is on better teaching for 
all students. Raising the bar for teachers will be especially difficult 
in view of the estimated shortage of 2 million teachers over the next 
10 years, but it is essential if we are to improve student achievement.
    Teacher quality also will be a key priority in the Administration's 
proposal to reauthorize the Elementary and Secondary Education Act of 
1965. Now that challenging academic standards have been established in 
every State, we see improving classroom instruction as essential to 
driving these standards down to the classroom level.
    Our ESEA reauthorization proposal will include a new initiative, 
called Quality Teachers and High Standards in Every Classroom, that 
would help States and school districts continue the work of aligning 
instruction with State standards and assessments while focusing most 
resources on improving teacher quality through high-quality 
professional development. This new initiative, which would not take 
effect until fiscal year 2001, would replace the current Goals 2000, 
Title II Eisenhower Professional Development State Grants, and Title VI 
Innovative Education Program Strategies State Grants programs.
    For fiscal year 2000, the President's budget includes $335 million 
for Eisenhower Professional Development State Grants, which help States 
and school districts provide intensive professional development in all 
the core academic subjects. The newly authorized Teacher Quality 
Enhancement Grant program would receive a $40 million increase, for a 
total of $115 million. These funds would help States improve the 
quality of their teaching force, strengthen the capacity of educators 
to design effective teacher education programs, and reduce shortages of 
qualified teachers in high-poverty school districts.
    The $1.4 billion Class Size Reduction program also is an important 
part of the teacher quality effort, because it allows school districts 
to use up to 15 percent of their allocations to improve teacher quality 
through such activities as testing new teachers for academic content 
knowledge and professional development for current teachers.
    A $25 million increase for Bilingual Education Professional 
Development would help address the critical national shortage of well-
prepared bilingual and English-as-a-second-language (ESL) teachers. And 
a new $10 million American Indian Teacher Corps program would recruit 
and train 1,000 new Indian teachers over the next 5 years to work in 
Native American communities.
                        improving school safety
    School safety is a concern of teachers, parents, and students 
alike. The President's budget includes significant support for a wide 
range of efforts to keep schools safe and drug-free. The $439 million 
request for Safe and Drug-Free Schools State grants would target larger 
grants to school districts with the most severe problems by requiring 
States to distribute 30 percent of their allocations as competitive 
grants.
    We would also increase funding for the Coordinator Initiative, 
which would put a skilled program coordinator in nearly half of all 
middle schools to help develop and implement effective drug and 
violence prevention strategies. And a new $12 million initiative known 
as Project SERV (School Emergency Response to Violence) would 
strengthen current ad hoc efforts to provide emergency assistance to 
schools affected by violence or other traumatic incidents.
          expanding opportunities for postsecondary education
    One of the most important achievements highlighted by President 
Clinton in his State of the Union Address was the simple statement that 
``we have finally opened the doors of college to all Americans.'' Over 
the past 6 years, larger Pell grants, expanded work-study 
opportunities, lower borrowing costs on student loans, and generous 
Hope and Lifetime Learning tax credits have made college possible for 
all who qualify.
    Paying for college is still a difficult burden, however, especially 
for low- and middle-income families, and our 2000 budget would help 
reduce that burden. The maximum Pell Grant, for example, would rise to 
$3,250, an increase of $125 over the 1999 level. A $64 million increase 
for Work-Study would fulfill the President's goal of giving 1 million 
recipients the opportunity to work their way through college. The Work-
Study request also would bolster the ``America Reads'' and ``America 
Counts'' initiatives, under which Work-Study recipients serve as 
reading and math tutors.
    Despite the availability of student aid, too few disadvantaged and 
minority students pursue and complete a postsecondary education. The 
2000 budget contains several proposals to increase college-going and 
college-completion rates for these students.
    We would double funding to $240 million for the GEAR UP program, 
which supports new partnerships between postsecondary institutions and 
middle schools to help disadvantaged students think about and plan for 
college early on in middle school. The request would provide early 
intervention services such as mentoring, tutoring, and career 
counseling for about 381,000 students in nearly 1,000 high-poverty 
middle schools. The budget also includes a $30 million increase for 
TRIO, for a total of $630 million to support outreach and support 
services extending from middle school through graduate education.
    Two new initiatives would encourage students to enter and complete 
postsecondary education. The $35 million College Completion Challenge 
Grants program would help postsecondary institutions increase the 
persistence rate of students who are at risk of dropping out. And the 
$15 million Preparing for College initiative would provide vital 
information to young students and their parents about the importance of 
higher education and the steps needed to go to college.
                improving the skills of adult americans
    Finally, the President's budget includes significant increases for 
programs to help adult Americans master literacy and other basic 
skills. Adult Education State Grants, for example, would increase by 
$103 million, or 28 percent, to expand State efforts to help immigrant 
and other limited English proficient adults--including Hispanics--to 
learn English, make a successful entry into the workforce, and be part 
of the American success story.
    The request also would provide $70 million to demonstrate methods 
of providing instruction in English as a second language and civics/
life skills to recently immigrated young adults who were never enrolled 
in American schools and who completed minimal education in their native 
countries.
    Disadvantaged adults also would benefit from a proposed $55 million 
expansion of the Community-Based Technology Centers program, which 
helps community residents gain technology skills, take courses on-line, 
and access on-line job databases by bringing technology to public 
housing, community centers, libraries, and other community facilities.
    I believe the President's budget offers a significant opportunity 
to bring real change to our schools and enhance lifelong learning for 
all Americans. I look forward to working with the Subcommittee to make 
good on this opportunity.
    I will be happy to take any questions you may have.

                       federal education programs

    Senator Specter. Picking up on a conversation which you and 
I had last week about the number of programs, I note that your 
Department administers some 171 programs, that there has been a 
reduction of some 7 programs and an addition of 10 more 
programs. And I believe that we need to renew the effort to 
evaluate all of these programs.
    We go back historically and find that some Senator at some 
point or some Member of the House had a special program, and 
there is a real issue as to whether those programs retain their 
current vitality. And there is, as you know, Mr. Secretary, a 
growing sense in the Congress and I think in the country, too, 
on more block grants and less strings attached to Federal 
funding. So I would like to put our staffs to work on that and 
then we can renew that effort with Senators and you personally 
at a later stage.

                    special education funding level

    The issue of special education continues to be a very 
pressing national priority. And there is a commitment on this 
mandated program by the Congress to fund 40 percent. That 
funding had been pretty level at $2.2, $2.3 billion until 3 
years ago when we added $780 million and 2 years ago, $700 
million and last year $509 million. I know that we are going to 
be facing additional pressures on special education to find an 
increase in funding. When we take a look at the total increase 
for the Department it is $1.2 billion and the request for the 
100,000 teachers is some $1.4 billion.
    Let me ask you, Mr. Secretary, a threshold question in 
assessing priorities. How would you compare the responsibility 
of the Federal Government to increase funding on special 
education with the issue of additional teachers, evaluating the 
Federal role versus State and local responsibility on the 
funding items?

              individuals with disabilities education act

    Secretary Riley. Mr. Chairman, let me kind of describe what 
our proposal is this year in the IDEA area that you inquire 
about.
    We have in this proposed budget a $116 million increase in 
IDEA. It is directed toward prevention, though. $30 million is 
directed towards children aged 0 to 2. Senator Stevens was 
inquiring about young children and brain development; fetal 
syndrome, crack babies, all of the different problems of very 
young children.
    $28 million is for children ages 3 to 5 as they get on 
into--as they are getting ready for school and then $50 million 
is for children ages 5 to 9. These amounts are for prevention 
activities in the IDEA areas.

          impact of class size reduction on special education

    We think really, though, the support of class size 
reduction which you refer to will have an enormous effect on 
the numbers of children in special ed and on helping children 
with disabilities. Some 75 percent of children with 
disabilities spend more than 40 percent of their time in a 
regular classroom. That is important to realize. A regular 
classroom is very important for disabled children.

                         america reads program

    Also, the America Reads program, goes to the reading issue 
which is so important for young children.

                    budget caps and funding choices

    Senator Specter. Mr. Secretary, you are not suggesting that 
by increasing the number of teachers that we will be able to 
cut back our commitment on special ed, though, are you?
    Secretary Riley. I am saying by those things we will cut 
back, in my judgment, in a good way on the number of children 
who will go into special ed, and that will affect the cost of 
special ed. I very strongly support the funding of special ed 
and, as you know, the funding has increased significantly for 
IDEA over the last several years, and much of that leadership 
has come from Congress.
    Senator Specter. Almost all of it has come from Congress. 
But if you have a limited number of dollars and have to make a 
choice between the new teachers and special education, where 
would you go, Mr. Secretary?
    Secretary Riley. Well, of course, the caps have put kind of 
an artificial limit on those decisions. And what I would say is 
that you would have to have a balance in that. I think these 
issues like school construction, class size, reading and so 
forth impact on special ed students in a very significant way 
as well as all other children.
    Also, I think the prevention part of special ed is 
something we should emphasize. I would like to see funds for 
IDEA raised, but the caps, if we do these other things, of 
course, prevent that. But if the caps were relieved in some way 
during the year, I would think IDEA would be one of the 
priorities that should be considered.
    Senator Specter. My red light is on. So I will ask another 
question. But I would ask for your further response to that 
question. If the caps are raised, that is a different ball 
game. If the caps are not raised, we have to make choices. And 
I would like to have your recommendation if we have to choose 
one or the other. These are the really two big ticket items. 
Unless we can cut a lot of programs and save very substantial 
money, I think we are going to have to make that choice.
    And I can understand that you may want to reflect on it 
some more. But when Senator Harkin and I finally sit down for 
our recommendations for the subcommittee, we are confronted 
with that choice.
    We have the early bird rule. Senator Feinstein was next in 
line.

                           prepared statement

    Senator Murray. She had to leave. She asked that her 
statement be put on the record.
    Senator Specter. Without objection, we will put Senator 
Feinstein's statement in the record. She may wish perhaps to 
submit questions for the record.
    [The statement follows:]
             Prepared Statement of Senator Dianne Feinstein
    Welcome to the Subcommittee, Secretary Riley. I am pleased that 
this is one of our first hearings this year and that you are one of our 
first witnesses because it demonstrates how important we think the 
education challenge is. I also want to thank Chairman Specter and 
Ranking Minority Member Harkin for scheduling this hearing early in the 
legislative session.
    I am very concerned about the performance of America's students, 
and to illustrate my concerns, I'd like to share the following problems 
confronting California:
  --Many high-tech employers in California tell me that they cannot 
        find qualified people to hire and must search abroad due to 
        applicants' inadequate skills and preparation.
  --Almost half the students entering California State University need 
        remedial education in math and English.
  --California's students perform below the national average in math, 
        science, and reading.
  --California has 21,000 teachers on emergency credentials at a time 
        when we will need 300,000 more teachers over the next decade 
        because of class size reduction and escalating enrollments.
  --California ranks near the bottom of states in the quality of its 
        teaching force because of the high number of uncertified or 
        undertrained teachers, according to a report from the National 
        Commission Teaching and America's Future.
    I know, Mr. Secretary, from your February 16 State of America 
Education speech, that nationally some student test scores are rising. 
However, we also know that our children are scoring behind their peers 
in other industrialized countries. The lowest 25 percent of Japanese 
and South Korean 8th graders outperform the average American student 
(Organization for Economic Cooperation and Development, November 1998). 
American students' overall performance was better than only two other 
countries, Cyprus and South Africa, in the Third International 
Mathematics and Science Study. In eighth grade math, our students 
scored well below the international average. These are troubling 
statistics.
    However, I am heartened by some of the initiatives that your 
Department has introduced. First, I commend you for supporting an end 
to social promotion, a cause I have supported since coming to the 
Senate in 1992. I also applaud your endorsement of state achievement 
standards, high-school exit exams, class size reduction, expanding 
after-school and summer school programs, strengthening teacher 
training, ending emergency teaching credentials, paying teachers more, 
and turning around low-performing schools. These are all important and 
meaningful steps toward reform.
    Nevertheless, your budget increase of $1.2 billion represents a 3.7 
percent increase over last year. I'm sure you know that the education 
community has called for a $5 billion or 15 percent increase in fiscal 
year 2000. I would hope that we could find a way to increase our 
investment in education, when, after all, the federal share of total 
education spending by your Department is only 8.5 percent. The 
Committee for Education Funding says that in fiscal year 1999, 
education spending will be only 2 percent of the federal budget.
    I especially want to call your attention to one of my major 
concerns and that is the ESEA Title I formula. By our calculations, 
California is home to 13.5 percent of the Title I eligible children, 
but receives only 11 percent of Title I funds. While the national 
average for Title I funds per child is $710, California receives $601 
in Title I funds per child. Meanwhile, California has a poverty rate 
that exceeds the national rate and continues to experience a higher 
growth rate in poor children than most states.
    As I understand it, there are 3 factors that hurt California: The 
fiscal year 1999 appropriations ``hold harmless'' language, which I 
urged this subcommittee and the conference committee not to include; 
the state expenditure factor; and the small state minimum factor.
    My view is that the dollars should follow the child, especially in 
a program designed to provide extra help to disadvantaged children. I 
believe this is what Congress intended in establishing this program, 
that funding to a state be based on the number of children served. I 
hope you will join me in working for changes to carry out that 
principle.
     There is hardly a more important challenge before this Congress 
than improving American education. A January CNN/USA Today/Gallup poll 
found that education was Americans' number one choice for how most of 
the budget surplus should be spent. I believe Americans are demanding 
reform because they know how important the foundation of a good 
education is for their children.
    I look forward to working with you to implement reforms systemwide, 
broadly and deeply.

                 opening statement Senator Patty Murray

    Senator Specter. I believe Senator Murray is next in order 
of arrival.
    Senator Murray. Thank you, Mister----
    Senator Specter. Pardon me, Senator Harkin, you are next.
    Senator Murray, the ranking member has yielded.
    Senator Murray. Thank you, Mr. Chairman, and thank you, 
Senator Harkin, as well.
    I welcome Secretary Riley. It is always a pleasure to work 
with you on issues facing us in our schools across the country. 
I especially appreciate your support and help from the 
Department's level in our attempt to reduce class size.

           federal education funds as percent of total budget

    None of us want to pit special education students against 
other students in any way. And in setting priorities I think we 
set up false choices, if we try and do that. Certainly we have 
to get down to dollars and cents and how much we are going to 
allocate for each. I believe if we set our priority at the 
national level to fund education in a way that is adequate, 
much more than the 1.6 percent of the Federal Government's 
budget that we currently do, we can set priorities that benefit 
all children, all students, all communities and I hope that we 
can continue to work in that direction.
    Mr. Secretary, you have done a great deal for students 
across our country in your tenure at the Department. I want to 
thank you not only for the education initiatives that you put 
out there, but for going out and coming to our schools, 
visiting the different sites, facing students and teachers and 
parents on an eye-to-eye level and really understanding what 
the needs are out there.
    I know when you see what all of us do, when you visit our 
schools, that you see there are a lot of needs. I am often 
struck by the fact that people question whether there should be 
a Federal role in education. And I would like to hear your 
opinion about this as well.
    But it is my feeling that we absolutely have to have a 
Federal role. None of us can opt out of this. If you could 
respond in a general way as to how you see that, I would really 
appreciate it.

                       federal role in education

    Secretary Riley. I have said before, Senator, that in my 
view, and, of course, I am a former governor, as is the 
President, that education is chiefly a State responsibility and 
a function then of the local schools and they, at the local 
school districts, are creatures of the State. And that the 
Federal Government in this education era--this information 
era--the Federal Government does have a very important role.
    It is really, when you think about it, it would be kind of 
foolish for us to be in this enormous education era, and with 
this country being the leader in the world in so many ways, for 
us not to have a national purpose to have education be very 
important, a priority.
    I think we can do that, and the way that we propose to do 
it is not to take control away from the States but to support 
things that are working in the States, things that we can 
clearly see that make a difference, a support system, a 
priority system for State and local governments.

                          class size reduction

    And in terms of class size that you have been such a leader 
in, it is very clear--you go from State to State, you talk to 
parents, you talk to anyone else--class size, especially in 
those early years or especially for reading, is always listed 
as a priority.

                               star study

    And it simply makes a big difference in so many ways, as 
you know. And it makes a difference as shown in these studies, 
very good studies of class size reduction, such as the Student-
Teacher Achievement Ratio (STAR) study from Tennessee, for 
these children. The STAR study is a longitudinal study; they 
are tested again in the 8th grade and the 9th grade, and it 
showed it makes a difference by having a small class size in 
those early years.
    So I think the Federal Government has a very legitimate 
role. We do not tell States who to hire as teachers. We do not 
set up how they should pick teachers or whatever. But we try to 
provide leadership and research information and so forth. But I 
think that is a very legitimate Federal role.

            authorization of class size reduction initiative

    Senator Murray. Thank you, Mr. Secretary, and I agree with 
you a hundred percent that our job is to support what is 
happening at the local and State levels and particularly in 
arenas that do make a difference, and reducing class size is 
clearly one that does.
    As you mention, the STAR studies show that. And it is not 
just a one-time help. It helps all the way along. We want all 
of our kids to succeed. I will be offering, as you know, an 
amendment on the Floor of the Senate today regarding class 
size, authorizing the program for the next 6 years. And the 
question always comes up, ``Why do you have to do it today?''
    Could you give me your perspective on why it is important 
for us to take this step now in terms of reducing class size?
    Secretary Riley. I think one of the important reasons is, 
of course, we funded the first year last year, and that money 
is just now--as you know we forward fund most of our education 
programs--and that money is just becoming available for the 
school year.
    And it is very important for those school districts out 
there that are choosing teachers and are deciding how they are 
going to have qualified teachers in their classrooms to know 
that this is a program intended to be authorized and to be a 
permanent program.
    If they do not, they have a terrible decision in deciding 
whether to hire these teachers that can lower the class size 
and make a big difference when they are afraid they might lose 
the funds if it is not authorized. So I think it makes an awful 
lot of sense now to say to the school people out there this 
program is authorized. It is something that we on the U.S. 
side, Federal side intend to support.
    Senator Murray. I agree with you.
    And as a former school board member, I know they are 
sitting there this month making decisions about their budgets 
for the following year and looking at programs and wondering 
was this just something you did last October. Is it something 
we can count on. And that will make a determination of what 
they do in terms of hiring decisions. They are beginning that 
process right now.

                           prepared statement

    I appreciate your Department's support on this initiative, 
and we look forward to success. Again, thank you for all your 
work on behalf of education in this country.
    Senator Specter. Thank you, Senator Murray.
    [The statement follows:]
               Prepared Statement of Senator Patty Murray
    I want to thank Secretary Riley for his comments today and for his 
tremendous leadership. The children of this nation owe a great debt to 
Secretary Richard Riley, because all his vision, all his advocacy, all 
his hard work spurring national investment in education--he does it all 
to make sure today's children are tomorrow's successful adults and 
citizens.
    The appropriations priorities that President Clinton has proposed 
this year continue a multi-year effort to improve federal funding for 
schools. The priorities within his proposal--improving the quality of 
America's teachers, helping communities to modernize facilities, 
investing in education technology, and especially, continuing efforts 
to help school districts hire 100,000 highly-qualified teachers--are 
priorities shared by many on this subcommittee and by the American 
people.
    We can make no greater investment than in the time and attention 
our children get from their teachers, so it is vital that we continue 
to move forward on class size reduction, and fund the full $1.4 billion 
this year.
    Of course, there are a few areas where I have specific concerns--
the lack of a significant funding increase for IDEA has the effect of 
polarizing the education debate on Capitol Hill, and it does not help 
to get us to funding the 40 percent federal share of local school 
district cost. Impact Aid is another area where I strongly urge the 
President to do things differently next year.
    But my larger issue, and I know Secretary Riley is supportive of my 
goals in this area--is the long-term look for overall education 
funding. Today, 1.6 percent of overall spending goes to education, and 
the American people think education is more than a 1.6 percent 
priority.
    In a Greenberg-Quinlan survey in 1998, when asked whether the 
federal government is spending too much, too little, or the right 
amount on education, 58 percent of Americans said ``too little,'' as 
opposed to only 9 percent who thought it was too much. People know that 
education is the most important investment we can make, and they know 
that despite all the gains we can get through increased efficiency and 
creative thinking--schools do cost money. They aren't afraid of wise 
spending on public education--they know that investment now heads off 
all kinds of costs down the road.
    I want to work with Secretary Riley and the members of this 
subcommittee to see what we can do to make education funding more than 
a 1.6 percent priority in our appropriations process. Students are 
coming to the school house door with more costly needs every day--an 
investment to meet those needs now will strengthen our economy and 
national capacity for greatness in the future.

               opening statement of Senator Thad Cochran

    Senator Specter. Senator Cochran.
    Senator Cochran. Mr. Chairman, thank you very much.
    I join you and others in welcoming the Secretary to our 
hearing. It is always a pleasure to attend this hearing and 
review the budget request of the administration for the 
Department of Education.

               teacher training--national writing project

    I am particularly pleased this year that there is an 
increase in funding requested for the National Writing Project. 
This is a teacher training program that has really proven to be 
one of the most successful teaching training models in the 
country. And it is gratifying to see the Department agree that 
it is a worthy program and justifies an increase in funding.
    Coincidentally, I am introducing legislation today that 
will reauthorize this program and bring it up-to-date and to 
take into account the growth in the program. It now includes 
156 sites in 46 States serving over 100,000 teachers at a 
bargain price.

                teacher training--pbs math/line program

    In passing let me suggest another teacher training program 
that is proving to be very helpful as well and that is Math/
Line. It is a PBS program, that has proven to be very effective 
in reaching large numbers of teachers. As a matter of fact, 
these two teacher training programs have the potential of 
reaching all teachers throughout the country, and I suggest we 
explore ways to see that that happens, that that becomes a 
reality.

                          esea reauthorization

    One other observation is about your observation on the 
Elementary and Secondary Education Act, that is not really 
under this budget right now, or this budget does not deal with 
that. But I am hopeful that as we approach the reauthorization 
of ESEA we make an extra effort to be sure that the Title I 
formula takes into account the impact of chronic poverty in 
States like Mississippi and there are others, not just singling 
out our State.
    The Mississippi Delta region particularly needs special 
attention, and this program gives it that kind of special 
attention, but not if the formula tries to be everything to 
everybody, which has been the tendency in recent years. So I 
challenge the Department to look for ways to make sure that the 
Title I formula is equitable and recognizes the stress that 
school districts have in areas of chronic poverty.
    I suppose you can tell from my statement that I do not 
really have any questions. I have some opinions and I thought I 
would just express them. But we appreciate the opportunity of 
working with you, Mr. Secretary. Any reaction you would like to 
give to those observations, I would be happy to hear, though. 
And I ask that all of my remarks be printed.
    Senator Specter. Without objection, the full statement will 
be made a part of the record.
    [The statement follows:]
               Prepared Statement of Senator Thad Cochran
    I will introduce the National Writing Project amendments and 
reauthorization bill this day at 12:45 p.m. The National Writing 
Project began as the only Federal program to support the teaching of 
writing in fiscal year 1991. The fiscal year 1991 appropriation was $2 
million. The administration included funding in its budget request for 
the first time last year, a level funding of $5 million. Congress, at 
my suggestion, increased the funding to $7 million.
    This year, the Department of Education requests $10 million for 
fiscal year 2000. And, it has made the National Writing Project a major 
stone in its education plan. It's about time.
    The amendments will expand and update the authorizing legislation 
under the Elementary and Secondary Education Act to reflect the growth 
of the National Writing Project. With 156 sites in 46 states, the 
Writing Project serves over 100,000 teachers every year.
    It is a teacher training model, generates more than six times the 
relatively small federal investment. Teachers of all subjects benefit 
from training, and the success of students who are taught by Writing 
Project teachers is evident: they score better not just on writing 
examinations, but in reading and mathematics.
    I hope the Department of Education will use the National Writing 
Project model as the model for the many teacher training proposals it 
has throughout its fiscal year 2000 request. The National Writing 
Project along with the highly successful MATHLINE, a PBS mathematics 
teacher training program, provide the potential to reach every teacher 
in the United States with effective training methods, at a bargain 
price.
    I am disappointed in the funding requested for MATHLINE and Ready 
to Learn Television. These are important learning and teaching projects 
that reach thousands of teachers, parents, preschoolers and students. I 
hope we can increase those funds.
    Title I funding for the education of disadvantaged children is 
always a concern to me. Again, it doesn't seem to matter how much money 
we put in this program, our struggle seems to be keeping Mississippi's 
share. I understand the problems with rises of poverty in other areas 
of the country, but I hope that this year we can establish a formula 
that recognizes the great impact of chronic poverty in states like 
Mississippi, and that assistance to other states is not at the cost of 
the children in the Mississippi Delta.
    The Title I funds are the lifeline for most of the schools in my 
state. Principals tell me every year about the tremendous improvements 
they have been able to make school wide.
    I question the advisability of the high spending level for reading 
improvement, not because I don't believe we need improvements, but 
because of the frustration that still exists by administrators and 
principals in being able to choose reliable materials and training to 
actually do some good. The National Institute for Child Health and 
Human Development, for instance, has conducted research, at Congress's 
request, that produced a screening method that can be implemented for 
less than $20 per child. That's a first step. One that, it seems to me, 
would be money well spent.
    The National Reading Panel has recently sent to me a progress 
report on their work. This panel was created as a result of legislation 
I introduced in 1997. The Panel traveled the country and, ``heard from 
44 invited presenters and 73 members of the public who addressed their 
concerns about reading.''
    In the report, the panel sets out the scientific methodology by 
which reading research ought to be judged. It took this panel of 
distinguished researchers, teachers, administrators and informed 
parents, nearly a year to get to this point. It is not a rushed 
process. I'm encouraged by their work and think we will have good 
advice when they are finished, projected to be in early 2000.
    I hope the Department will use this information and move cautiously 
before encouraging school districts to spend hundreds of millions of 
dollars on unproven methods, which according to this report, may 
actually impede the progress of students learning to read.
    I ask that the report be included in today's hearing record.
    I continue to be concerned about the trend in Foreign Language 
assistance; that is, that over the last five to 10 years, there has 
been a decrease in the funding for the small program to help schools 
develop foreign language classes. Currently, the program is $6 million 
for matching grants to school systems. I hope we can work on improving 
not only the funding level, but the distribution of those funds.

    [Clerk's note.--The report referred to in Senator Cochran's 
statement does not appear in the hearing record, but is 
available for review in the subcommittee files.]

                        national writing project

    Secretary Riley. Thank you, Senator.
    I would say this. You have provided grand leadership in the 
area of writing, preparing teachers to help them teach better 
in this writing field. And your involvement has certainly had 
an impact on our thinking about it. And we did request in this 
budget an increase of $7 million to $14 million for the year 
2000.
    And I really do think that is very important--it is not a 
giant thing but, as you point out, it impacts a lot of 
teachers. And a lot of young people nowadays with computers and 
other things do not write like they used to, and even writing 
on the computer is important. But I think that is a very 
outstanding thing for you to have pressed for in the past and 
it is making a difference.
    I agree with you on the Math Line. That is a very 
impressive teacher aid. Math teaching is so important. And a 
lot of teachers will say that math is an area that they need 
special help in and this is a very good program.
    So I thank you very much for your statements.
    Senator Specter. Thank you, Senator Cochran. Senator 
Harkin?
    Senator Harkin. Thank you, Mr. Chairman.

                             TRIO programs

    Mr. Secretary, one of the programs that I have been 
involved in for a long time, I have watched it from both the 
authorizing end and the appropriations end, and that has been 
the TRIO program, 30-year record in the TRIO program.
    Now I do not know, but from all that I have seen in the 
past of sitting in the chair that now is occupied by my friend 
from Pennsylvania and sitting on the authorizing committee, it 
has been a very successful program.
    I have met a lot of people who have been through that 
program and minority students, disadvantaged students who came 
through the Upward Bound or the Talent Search Program. And I 
guess what I am wondering is this. We have a Talent Search 
Program that serves 320,500 students with $100 million. The 
GEAR UP Program is proposing $250 million, 2\1/2\ times as 
much, to serve 381,000 students, about the same.
    I am wondering what is going on there. Why can we not just 
use the Talent Search program?
    Secretary Riley. I think both programs are very important. 
I do not have to tell you, Senator, because you clearly 
understand this. It is about getting young children prepared 
for college, children who otherwise would not have considered 
preparing for college--children who thought college was for 
somebody else. And we have got to get over that hump.
    The TRIO program has done a wonderful job of doing that. It 
does have a program that reaches to individuals in those early 
years primarily in high school and college.
    Senator Harkin. High school.
    Secretary Riley. Yes. And it helps kids through college in 
another program.

                   gear up and talent search programs

    What GEAR UP does is in the same area, but it is different. 
It connects up schools. It connects up very poor middle 
schools, for example, with colleges and with other community-
based groups. In this connection the entire school is then 
impacted through this linkage with higher education. And then 
they help these kids, monitor them and tutor them on through 
high school and whatever. So I think it is----
    Senator Harkin. Are you describing the Talent Search 
Program?
    Secretary Riley. Talent Search is an individual program 
that deals with individuals. This is a school program. GEAR UP 
is a school program that----
    Senator Harkin. I thought GEAR UP was for mentoring, 
tutoring, that type of thing.
    Secretary Riley. It is. Structurally it connects up schools 
to colleges and then the other part of it is a State program. 
So they are different programs.
    This really looks at a higher concentration of poverty area 
middle schools--Berkeley, is an example. The Berkeley Pledge 
Program that was done out there. It is such an effective 
program to have a fine university like U.C. Berkeley connect up 
with two or three middle schools, and I mean the entire 
schools, and to have these college students working in these 
schools and professors back and forth and then identifying 
problems for children and working them through.
    Senator Harkin. So the difference is the Talent Search 
Program is individually targeted, but the GEAR UP program 
involves connecting a school to a college.
    Secretary Riley. That is one big difference. And the other 
one is GEAR UP is primarily focused on middle school and while 
some of the TRIO program reaches middle school.
    Senator Harkin. It sure does.
    Secretary Riley. But that is not a priority. Well, it is a 
priority, but the larger part is focused on high school.
    Senator Harkin. Mr. Secretary, I appreciate it. I have just 
always had a hard time understanding this GEAR UP program and 
why we could not have just used the existing structure of the 
TRIO program and the Talent Search Program to accomplish the 
same thing, but I intend to look into that further.

                      95 percent to the classroom

    My time is limited. I just have one other point I want to 
cover with you, Mr. Secretary. A recent statement was just made 
on the Senate floor and I will read it to you. I will not name 
the Senator, but a statement was said about this ED-FLEX bill. 
It said it would allow new flexibility to State governments in 
ensuring that 95 cents of every dollar gets to the classroom as 
opposed to the 65 cents that currently get there.
    What I want to know is if you can help set the record 
straight here and see how much is eaten up by administrative 
costs. Is it really 65 cents that gets out there?
    Secretary Riley. And that has disturbed me quite a bit to 
see some of these references as to how the Federal Government 
is eating up all this money. I appreciate the question.
    If you look at the Federal administrative costs of the 
Federal Government--our costs in the Department of Education--
it is the smallest Department, I think, in the Federal 
Government, with 5,000 employees. As you know, we have come 
down from 7,000 since we became a Department. For elementary 
and secondary programs, the Department of Education Federal 
administrative cost equivalent is around one half of 1 percent. 
The State cost then, the State administrative cost of State 
formula programs--and there is a reason that there is more 
State administrative cost--is around 4 percent. So as far as 
what gets to the school district in the schools out here with 
Federal programs, it is like 95.5 percent of the money. And 
when people say this enormous sum of 30 and 40 percent is taken 
out by the Federal Government to administer these programs, it 
really is misleading.

          separate appropriation for department administration

    Senator Harkin. I wonder where that 65 percent figure comes 
from. Let us just say that when we appropriate money for a 
program such as Title I or even a smaller program like the 
National Writing Program or STAR schools, does the Department 
take a cut off the top for administration of those programs?
    Secretary Riley. Well, the Department's administration 
money comes from a separate appropriation for salaries and 
expenses. That is why I say the Federal equivalent is like one 
half of 1 percent.
    Senator Harkin. So when we appropriate money on this 
committee for a program, there is not a certain amount of that 
taken out for administration?
    Secretary Riley. No, sir.
    Senator Harkin. That money comes in a separate 
appropriation for salaries and expenses; is that correct?
    Secretary Riley. Yes; and that is why our program 
administration cost is equivalent to about \1/2\ of 1 percent.
    Senator Harkin. And then you say about 4 to 4\1/2\ percent 
is retained by the State?
    Secretary Riley. Yes, sir; but for Title I the law provides 
the State cannot take out more than 1\1/2\ percent. So for 
Title I, 98\1/2\ percent of the money--98\1/2\ percent of the 
appropriated money gets to the local school district.
    Senator Harkin. So you are saying, again I just want to 
make the record straight, you are saying that with the 
exception of Title I, which has a 1\1/2\-percent limit for 
administration on the State side, you are saying that 95\1/2\ 
percent of the funds that we appropriate here get to the local 
school district.
    Secretary Riley. That is right.
    Senator Harkin. How much actually gets to the classroom? Do 
we know that? Do we have any idea of who actually gets----
    Secretary Riley. Well, there are ways to determine that. It 
varies, of course, significantly from school district to school 
district, and those are important issues.
    But, of course, you have elected school board members that 
make those decisions. And it has always been my judgment that 
we in the offices up here in Washington ought not to be 
involved in what the local school district does. Some of them 
might spend too much money in the eyes of people. Some of them 
might spend too little money. But the important thing is what 
gets to, in my judgment, what gets to the local school 
district.
    Senator Harkin. I appreciate your setting the record 
straight.
    I was in my home State here just 1 week ago, 2 weeks ago 
and this came up about all of this money being used, taken out 
of education, and the 65-percent figure is somehow rolling 
around out there. I do not know from whence it came. I am glad 
you set the record straight on that.
    Secretary Riley. Thank you.
    Senator Harkin. Thank you, Mr. Chairman.
    Senator Specter. Thank you, Senator Harkin. Senator Gregg? 
Senator Kohl?

                           prepared statement

    Senator Kohl. Thank you. Thank you, Senator Gregg.
    I ask that my prepared statement be inserted into the 
record at this point.
    Senator Specter. Your prepared statement will be inserted 
into the record as requested.
    [The statement follows:]
                Prepared Statement of Senator Herb Kohl
    Thank you, Mr. Chairman. And I want to thank you, Secretary Riley, 
for appearing before this Subcommittee today to discuss the fiscal year 
2000 budget for the Department of Education.
    I am pleased to see that the President's budget request again 
includes an increase for the Department of Education. However, I am 
concerned that the increase is only a modest one--only 3.7 percent--
when our need to improve education is so great.
    The Federal government's role in education is to be a wise and 
generous investor in a public education system run by State and local 
governments. We need to be generous because the investment is directly 
in our future--in the children who will determine whether this nation 
remains economically strong, intellectually rich, and socially just. We 
need to be wise because we in Washington simply do not know what will 
work for the children of Wauwatosa, Wisconsin or Wichita, Kansas. Our 
educational needs are as diverse as our population.
    And States and communities are rising to the challenges of 
educational reform. For example, Wisconsin's SAGE program has been 
extremely successful in reducing class size and improving learning in 
the early grades. Milwaukee's Teacher Mentoring and TEAM programs are 
both improving the quality of teaching and encouraging teachers to 
stick with teaching. And many Wisconsin communities are working to 
bring more people from diverse backgrounds into teaching.
    When we give communities the resources and freedom to care for 
their children, they do. And, unfortunately, when we try to do it for 
them from inside the beltway, we often make ridiculous mistakes. I will 
be talking to you, Secretary Riley, about one of these later: a glitch 
in the class size reduction initiative that would have rural teachers 
racing between school districts rather than running classrooms.
    I thank you again, Secretary Riley, for appearing before the 
Subcommittee today. I look forward to discussing the President's budget 
in more detail, as well as your comments on programs that support 
quality teaching.

              class size reduction--allocation flexibility

    Senator Kohl. Secretary Riley, I would like to ask a 
question about the legislation surrounding 100,000 teachers 
which I support, but there is a quirk in that legislation that 
maybe you can offer a fix for. The legislation says that if a 
school district does not receive enough money to hire a full-
time teacher, then that district must form a consortium with 
another district or several other districts to be able to 
afford to hire a full-time teacher and then share that teacher 
between the several districts.
    In rural areas of my State and other States the districts 
are so large that the teacher winds up spending the majority of 
his or her time on the road simply trying to get from one 
school to another. I am sure you did not intend for this to 
occur. And I understand there has been some discussion about 
fixing it so that we can, in fact, allocate that money in a way 
so that it can be used for the purposes intended to be used for 
and not just for travel.
    Can you give a response to that problem?
    Secretary Riley. Yes. And I appreciate, Senator, you 
bringing that up and your staff has brought it up with my staff 
and it is a very real observation that is out there.
    In these rural school districts you do need a certain kind 
of flexibility to make it work well. We think we have that 
flexibility now and we are working on that. And we will 
respond. And if something further is needed in terms of 
legislative changes, we will let you know. But we think that we 
can work that problem out within the flexibility that is now 
provided.
    Senator Kohl. OK. Is it possible then to see to it that we 
get that fixed for the money that was appropriated last year, 
so that rural school districts do not lose that money?
    Secretary Riley. Yes, sir. Of course, that money is forward 
funded. That money has not gone out yet.

                  mentoring programs for new teachers

    Senator Kohl. OK. I would like to discuss for just a moment 
the mentoring programs around our country. We have a mentoring 
program in the Milwaukee public schools. Last year we hired 
1,000 new teachers and they afforded mentoring to 180 teachers. 
There is a substantial increase in the retention rate for 
teachers who participate in mentoring programs.
    I think they have been demonstrated to be useful and 
effective in that they work and that they are cost-effective. 
How do you feel about mentoring programs, Mr. Secretary, and is 
there some way that the Federal Government can be more active 
in providing funds for mentoring programs?

                       reading mentoring programs

    Secretary Riley. Well, yes, I think so. The Reading 
Excellence Act, the America Reads Challenge that we have out 
there involves mentoring and tutoring and several other 
programs. College Work-Study is related to that. In those 
College Work-Study programs we worked out an incentive for 
college students to serve as reading mentors for children who 
need special help.
    And we have over a 1,000 colleges--1,200 colleges and 
universities--that are involved in that program. We definitely 
will work closely with mentoring programs in your State as we 
do in Houston and L.A. and New York and all around the country 
to help train individuals--older citizens in many cases and 
often in some cases peer-aged children, to serve as mentors and 
tutors for children. But our reading priority will go a long 
way in serving that purpose.

                  mentoring programs for new teachers

    Senator Kohl. OK. I was referring in this discussion 
particularly to mentoring activities for new teachers.
    Secretary Riley. Oh, for teachers.
    Senator Kohl. So that we can increase our rate of 
retention, mentoring activities for teachers.
    Secretary Riley. Title II that was reauthorized last year, 
of course, under the Higher Education Act reauthorization that 
you all dealt with last year, Title II of that deals with 
teacher recruitment, teacher preparation and teachers in 
general. And it can deal with mentoring--to what degree, Mr. 
Smith?

           ESEA reauthorization teacher mentoring provisions

    Mr. Smith. It can deal with it to some degree. But there is 
a new provision that the Secretary talked about when he 
testified about the new Elementary and Secondary Education Act 
proposal which would emphasize teacher professional 
development.
    And a major part of that emphasis would be on mentoring, 
taking those teachers who are coming for the first 3 years, 
assigning them a very highly qualified teacher to work with 
them and other teachers to observe them and so on to give them 
feedback. And I think that kind of thing, Senator, is exactly 
right.
    Senator Kohl. So you are intending to do that?
    Mr. Smith. Yes.
    Senator Kohl. I thank you. And I thank you, Mr. Chairman.
    Senator Specter. Thank you, Senator Kohl. Senator Gregg?

                        special education budget

    Senator Gregg. Mr. Secretary, I want to follow up on the 
Chairman's discussion with you about special ed because I, for 
one, do not understand the antagonism that this administration 
has toward the special ed program.
    In the budget, I put up a chart up there, that you put 
forward you propose $1.2 billion in new spending. Of that $1.2 
billion only $3.3 million goes to the special ed program.

           federal share of excess costs to educate disabled

    The problem with this is significant in that the Federal 
Government made a commitment to fund 40 percent of special ed. 
As a result of the leadership of this committee, Senator 
Specter, we have gone from a 6-percent commitment--fulfillment 
of that commitment up to about 11 percent now. So we are now 
funding 11 percent over the last 3 years.
    The administration during that period has proposed no 
significant increases in special ed in any of its budgets. But 
when you come forward today and you propose a $1.2 billion 
increase in educational funding, you are essentially borrowing 
that from special ed obligations the Federal Government has and 
using it to initiate new categorical programs on the local 
States and communities which will require them to undertake 
what you decide is appropriate versus what the local 
communities decide they need to have done.
    Or to put it another way, when a local community has to pay 
the Federal share of special ed, which is what it is having to 
do today because the Federal Government refuses to pay the 40 
percent--it is only paying 11 percent--when the local community 
has to pick up that 30 percent that should have been paid by 
the Federal Government, it is taking local resources and having 
to allocate them to a Federal obligation set out by the Federal 
Government. So the local community cannot make a decision with 
its local dollars to hire a new teacher or to create an after-
school program because it has to use its local dollars to fund 
the special ed funds which the Federal Government was supposed 
to fund in the first place.
    So when you expand Federal education funding at the Federal 
level and you do not use those new expanded funds to fund 
special ed, you are further aggravating the local community's 
inability to make its own decisions as to how it should educate 
its children with its dollars. You are borrowing from their 
special ed dollars which they should be getting from the 
Federal Government in order to finance your now expanded 
programs.

                  special ed forward funding proposal

    In addition, not only does this budget not have any 
significant increase in special ed and does not make any effort 
at all to meet the 40 percent obligation the Federal Government 
has, but you have forward funded $2 billion of special ed money 
in this budget. So you have played a game with the special ed 
kids. You have taken $2 billion out of their account, pushed it 
into next year and then spent that $2 billion on some other 
initiatives, whatever they happen to be, putting the chairman 
of this committee in an almost untenable position.
    This, to me, has been the most egregious education activity 
of this administration. For an administration which claims to 
be an education administration to really treat the special ed 
program as a stepchild and to fund it in this manner, not fund 
it at all essentially, is a reflection to me that the 
administration is not so interested in its obligation as a 
Federal Government, but is rather interested in creating new 
programmatic activity which will make the Federal Government 
even more intrusive into local education.
    That is a statement, obviously, and we have discussed this 
before. But it is a statement based on some numbers that 
support it. I guess my question goes back to what the chairman 
said. Why does this administration continue to abandon the 
obligation it has to fund special ed in order to create new 
programs which are not necessarily needed by the local 
communities, but even if they are needed by the local 
community, could be funded by the local communities if the 
Federal Government fulfilled its obligation to fund special ed.

                 responsibility for funding special ed

    Secretary Riley. Let me speak to the issue of whose 
responsibility it is to fund education for disabled children.
    The fact is, that is a responsibility of the State. State 
constitutions, general laws of the State say that the State 
will provide free public education for all children in the 
State. Of course----
    Senator Gregg. Is it your position that through Public Law 
94-142, that was passed in 1975, the Federal Government made a 
commitment to fund 40 percent of the educational costs?
    Secretary Riley. There is no question that the 
authorization is up to 40 percent of the educational costs and 
that statement was made and people anticipate that it is 
something that we would reach for. No question about that.
    I wish we were there. If we were there, it would cost an 
additional $11 billion a year.
    Senator Gregg. Which is essentially the cost of your new 
initiatives when they are put on the books for a year.
    Secretary Riley. Well then if it is a State responsibility, 
the Federal Government comes in and says you do not have to 
take IDEA. That is not a mandate. States do not have to accept 
IDEA. But if they do, then they have to comply with IDEA.
    The anticipation hopefully would move closer in the 
direction of the 40 percent. But it is not a mandate for the 
Federal Government to pay 40 percent. So this is what I am 
saying. Every State takes IDEA because it involves a lot of 
money.
    The current language in IDEA says that if you exceed $4.1 
billion, then I think 20 percent of the increased money can be 
used for local government. However, they want to use it not 
even for education purposes. So you have got now local 
government resources being increased by IDEA, that is not 
directed necessarily to help disabled children.
    As I indicated earlier--I am not sure whether you were 
here--if the caps were not there and there was money for an 
increase, I would certainly favor IDEA and Pell grants and 
things of that kind, teacher quality----
    Senator Gregg. If the caps are not there, then you are 
going to take it out of Social Security. Is it your suggestion 
that we should be funding the new teacher programs from Social 
Security?
    Secretary Riley. No; we have submitted in our budget what 
we think is a way to allocate--our recommendation for 
allocating the funds. We have $116 million in there for IDEA, 
for disabled children. A good part of that is for prevention of 
problems and then we have a significant amount of money in 
there to deal with the regular classroom.
    Some 75 percent of disabled children are in regular 
classrooms over 40 percent of the time. So it affects everybody 
to have smaller class sizes, especially for those young years, 
and to have school construction and teacher quality and after-
school programs and so forth.
    So we think all of those programs work together. It is not 
just a fixed view on one thing, but it is all related. And I 
strongly support doing as much as we can in a sensible way to 
help disabled children.
    Senator Gregg. Thank you, Mr. Chairman.
    Senator Specter. Thank you very much, Senator Gregg.

                            charter schools

    Mr. Secretary, thank you very much for coming today. I just 
have one minor question. Yesterday the Philadelphia City 
Council took up the issue of charter schools with the issue 
turning on some 12 additional charter schools over and above 
the 15 which are now authorized--13 being in existence, two 
additional schools to currently be authorized.
    The total cost is $40 million for the 27 charter schools 
and the superintendent of schools, Mr. Hornbeck, expressed the 
view that the money could be better spent on the $94 million 
shortfall in the city of Philadelphia. Of course, their 
problems are exactly the same as our problems. It is a limited 
number of dollars and there are competing interests.
    I always felt the charter schools constituted a good idea--
keeping it within the public school system, the issue of 
vouchers and separate school system, along with privatization--
is a good experiment to provide competition for the public 
schools. And now we are looking at a stark situation in my 
hometown--a $94 million shortfall, $40 million for charter 
schools. And I would be interested in your appraisal, if you 
care to give one, as to how you would assess this priority 
choice.
    Secretary Riley. Well, Mr. Chairman, I think it would be a 
real mistake to get into local decisionmaking.
    Senator Specter. It is part of the United States.
    Secretary Riley. It is part of the United States.
    Senator Specter. I understand your jurisdiction.
    Secretary Riley. It is a local shortfall and it is a 
problem and then the question, of course, is how does a new 
charter school program weigh against a current shortfall. I 
really would be reluctant to express my view on that because I 
do not know all the details and the facts and the history.
    But I would say this. I agree with you that charter schools 
are a very good alternative for school boards to have. Of 
course, they depend on the State law and they depend on funding 
and so forth. But as you know, we have requested a $30 million 
increase this year from $100 million to $130 million which 
shows our support for the concept.
    Charter schools are a wonderful alternative. It is a 
wonderful option for school districts to have and it can be, I 
think, a good part of the mix. So I would say that this school 
superintendent and others would have to weigh those factors 
with their local problems and decide what they think is best 
for the district.
    Senator Specter. Thank you very much. We will not be 
including a line item to relieve them of the necessity of 
making their choice in Philadelphia.

                     additional committee questions

    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:]
              Questions Submitted by Senator Arlen Specter
           special education--grants to states budget request
    Question. The $4.3 billion appropriation in fiscal year 1999 
represents only 10 percent of the 40 percent goal the Federal 
Government intends to provide to meet the excess cost of educating 
children with disabilities. If the 40 percent goal were to be met, it 
would cost the Federal Government an additional $11 billion over the 
current appropriation or $15.3 billion. The fiscal year 2000 budget 
request for Special Education Grants to States is level-funded at the 
fiscal year 1999 appropriation of $4.3 billion.
    Why is the Administration requesting level funding for this program 
when we are so far away from reaching the 40 percent mark?
    Answer. While no additional funds are requested for the Special 
Education Grants to States program, our request includes $4.3 billion 
for funding this program. Since fiscal year 1996, funding for Grants to 
States has increased by almost $2 billion, or 85 percent. We believe 
that the current level of funding provides an appropriate level of 
support given the fact that States have the primary responsibility for 
educating all children, including children with disabilities.
Special education programs with funding increases
    The Grants to States program is sometimes viewed as the Federal 
program for providing assistance to States in serving children with 
disabilities. Additional funds are requested for other Special 
Education programs that will help States serve children with 
disabilities. These include increases of $20 million for Grants for 
Infants and Families to help States provide early intervention services 
for children with disabilities from birth through age 2 and their 
families, $28 million for Preschool Grants to help States provide 
special education services for children aged 3 through 5 with 
disabilities, and $10 million for State Improvement grants to help 
States reform and improve their educational, early intervention, and 
transitional services systems. An additional $50 million is also 
requested for new Primary Education Intervention grants to local 
educational agencies to help them improve results for young children 
with disabilities.
Other education programs addressing the needs of children with 
        disabilities
    Children with disabilities also benefit from other Federal 
education programs that are not focused solely on children with 
disabilities. These programs include programs such as the Class Size 
Reduction Program that helps schools hire highly qualified teachers and 
reduce class size; Eisenhower Professional Development State Grants 
that help ensure that teachers, including teachers of children with 
disabilities, have the content knowledge to help children achieve to 
high standards; and 21st Century Community Learning Centers that 
provide a safe environment and expand learning opportunities for 
children before and after school. Federal subsidies for school 
construction bonds that will be used to repair, renovate, and construct 
schools will help ensure that our school buildings enhance the teaching 
and learning of all children, including children with disabilities. We 
believe that our request reflects the best combination of programs and 
funding to address the needs of all children.
            class size reduction funds matching requirement
    Question. The fiscal year 2000 request is for $1.4 billion and with 
a new requirement for local school districts to match up to 35 percent 
of any funds they receive above the $1.2 billion appropriated in fiscal 
year 1999. An exemption would be made for any district with at least 50 
percent of its students from low-income households.
    If the very purpose of the program is to help disadvantaged school 
districts who are struggling to resolve the overcrowding issue, how do 
you expect these schools to meet the 35 percent matching requirement?
    Answer. The Department does not believe that requiring local 
districts to provide a 35 percent match on any new Class Size Reduction 
funds they receive would be burdensome for most districts, and those 
districts that would have the greatest difficulty in providing such a 
match would be exempt from the requirement.
    For an average district, the amount of the match would be only 
about $7,200. The Department estimates that approximately two-thirds of 
all districts would have a matching requirement of no more than $2,700.
    Further, research has demonstrated the benefits of reducing class 
size in the early elementary grades, particularly for lower-achieving, 
minority, low-income, and inner-city students. The Department believes 
districts welcome Federal support to help them reduce class size in the 
early grades.
                matching requirement exemption provision
    Question. How is the exemption you propose feasible when class size 
reduction funds are provided to school districts with large proportions 
of low-income students?
    Answer. All schools districts, not just those with large 
proportions of low-income students, are eligible to receive Class Size 
Reduction funds. We are proposing to exempt only those districts in 
which at least 50 percent of the students they serve are from low-
income households. We estimate that, after exempting the highest-
poverty districts, the average national match provided by local 
districts would equal 30 percent of the Federal appropriation.
          esea reauthorization--program consolidation proposal
    Question. At a recent hearing held by the Senate Health, Education, 
Labor, and Pensions Committee, Secretary Riley proposed to consolidate 
the $491 million Goals 2000 program, the $375 million Innovative 
Strategies State Grants program, and the $335 million Eisenhower 
Professional Development program into one large ``teacher training and 
improvement program.''
    Please explain your rationale for this proposal?
    Answer. With Federal support and assistance, 48 States have 
implemented challenging academic standards and States continue their 
efforts to develop student performance standards and assessments 
aligned with their standards. There is strong evidence that those 
States that have led the way in adopting standards-based reform have 
already begun to see significant improvements in student achievement.
Consolidation proposal focus on professional development activities
    The next challenge is to support teachers as they strive to make 
high standards a reality in every classroom. The Administration's 
proposal for reauthorization would build upon the efforts that States 
and districts have undertaken with support from the Goals 2000 and 
Eisenhower Professional Development programs to implement standards-
based reform and improve the knowledge and skills of America's 
teachers.
    Research has shown that qualified teachers are the most important 
in-school factor in improving student achievement. The Administration's 
proposal to consolidate the Goals 2000, Eisenhower State Grants, and 
Title VI programs would strengthen the focus of States and districts on 
providing the types of professional development activities that have 
been proven effective in providing teachers with the knowledge and 
skills necessary to prepare all students to achieve to challenging 
standards.
          innovative education strategies state grants program
    Question. Why not consolidate all of the funds into the Innovative 
Strategies State Grant program, which provides funds to States for 
whatever the particular need of the school district, and allow the 
schools to choose how best to spend these funds?
    Answer. The Administration does not believe that Title VI, the 
Innovative Education Strategies State Grants program, is designed to 
support the types of State and local efforts most likely to result in 
real improvements in teaching and learning. The most recent evaluation 
of the former Chapter 2 program found that funds were used by fewer 
than half of the States to support such reform activities as revising/
developing standards for student performance or developing alternative 
measures of student achievement. Individual districts were even less 
likely than States to use Chapter 2 funds to support educational reform 
efforts. The same evaluation also found that some activities supported 
with program funds had little direct impact, or no impact, on students, 
instruction, or school staff.
    The Administration's reauthorization proposal would provide States 
and local school districts with flexibility in the use of funds, but 
would make the critical link between expenditures and standards-based 
educational reform that Title VI does not. The proposed program would 
support the efforts of States and local school districts to develop 
rigorous academic standards and to improve classroom practice and 
curriculum to help all students to meet those standards.
  college completion challenge grants compared to the student support 
                            services program
    Question. The fiscal year 2000 budget request proposes a separate 
and new program, College Completion Challenge Grants, with $35 million 
in funding to support activities to help at-risk students complete 
college. The existing TRIO Student Support Services program has much of 
the same focus by providing remediation, counseling, tutoring, among 
other services to low-income college students, whose parents have not 
completed a bachelors degree, and to disabled students to enter and 
complete college.
    How would the College Completion Challenge Grants you are proposing 
for the fiscal year 2000 budget differ from the kinds of services that 
are already being supported under the Student Support Services program, 
one of the Federal TRIO programs?
    Answer. The College Completion Challenge Grants program, newly 
proposed in fiscal year 2000 for $35 million, would be different from 
the Student Support Services program of TRIO in that it: (1) would 
focus solely on students in their first years of postsecondary 
education at risk of dropping out and; (2) would provide increased 
student-aid grants. While the Student Support Services program has 
proven to have a strong impact, this new program would complement these 
efforts by targeting at-risk students in their first years and 
providing them with more grant aid than they would normally receive--a 
feature TRIO does not offer. Furthermore, it would also help colleges 
provide intensive summer programs to increase the level of academic and 
social involvement of first-year students.
   gear up initiative compared to college completion challenge grants
    Question. How would this program differ from another college 
preparation and awareness program, GEAR UP, which is proposed to 
receive $240 million in fiscal year 2000?
    Answer. The GEAR UP program is very different because it targets 
middle school students, helping them to get into college. In contrast, 
the College Completion Challenge Grants program would provide an 
innovative approach to college retention for students who are already 
in college. In this way, these programs would not duplicate each other, 
but would be complementary; they would join efforts, College Completion 
Challenge Grants picking up where GEAR UP stops, to help ensure that 
middle school students enter and complete college.
      pros and cons of consolidating college preparation programs
    Question. In your opinion, what are the pros and cons of 
consolidating all of these college preparation programs?
    Answer. The problems of college access and attrition are so serious 
and complex that successfully increasing student enrollment and 
retention throughout the Nation will require a multi-faceted approach. 
While it would be possible to consolidate these programs and thereby 
reduce the statistical number of programs, successfully doing so would 
require creating one, extremely large program with many sub-programs. 
The problem with such a consolidation is that each of the higher 
education programs has different target populations and approaches.
    The goal of GEAR UP is to start middle school students on an 
academic pipeline that propels them into college. On the other hand, 
the goal of the College Completion Challenge Grants program would be to 
help institutions of higher education focus more resources on at-risk 
college students to ensure they graduate. As you know, TRIO already 
consists of five, highly important but separate programs. Each of these 
utilizes different approaches and focuses on different population 
groups. Therefore, attempting to create a single, efficient, and yet 
wide-reaching program with such a detailed and goal-oriented focus 
would be virtually impossible. The most efficient and effective way to 
solve the problems of college access and attrition is through several, 
comprehensive and focused programs like we propose, programs that 
complement each other with different approaches.
                                 ______
                                 
               Questions Submitted by Senator Ted Stevens
                 special education alaska pilot project
    Question. Last November, I held an education conference with the 
Alaska Commissioner of Education, the head of the PTA and Parents, 
Inc., school district officials, and top educators to discuss the state 
of education in Alaska. I'd like to raise a couple of issues that came 
out of that meeting. Alaska has the highest rate of fetal alcohol 
syndrome in the Nation, and as a result, one of the fastest growing 
rates of children requiring special education. In fact the Anchorage 
School District estimates that 25 percent of its students currently are 
enrolled in special education classes, and they project that figure 
will grow to one-third just after the turn of the century. So there is 
tremendous demand for special education programs in our State.
    But across the board, there is great dissatisfaction with existing 
special education programs. Parents feel that it is too bureaucratic 
and that resources go into paperwork and not into improving their 
children's educational achievement. Teachers believe mainstreaming 
children with serious behavioral problems creates huge discipline 
problems in the classroom. Administrators who are forced to hire 
teacher's aides, in some cases for each special education student, 
complain that the system is too costly. But everyone remains committed 
to provide the very best education possible for children with 
disabilities and learning problems.
    I asked the commissioner to convene a task force to develop a 
statewide pilot project for Alaska, which could cut through some of the 
red tape and focus resources where they are needed--on the children. 
The group includes parents of disabled children, teachers, 
administrators, and even students. They have nearly completed their 
work and are almost ready to present their plans.
    Would you be willing to work with us to develop and implement this 
effort through the special education innovative research program?
    Answer. The Department has several resources that are available to 
Alaska in pursuing reforms. In particular, our Office of Special 
Education and Rehabilitative Services is committed to a policy of 
continuous improvement through working with States. The Regional 
Resource Centers (RRCs) funded through our Special Education Technical 
Assistance and Dissemination program work with States to develop 
individualized technical assistance plans to support States in their 
efforts to improve services and results for children with disabilities. 
The Western RRC, which serves Alaska, is located at the University of 
Oregon in Salem. Other Special Education technical assistance and 
information resources address specific State concerns ranging from 
financing services and testing to grade specific services for children 
from preschool through secondary school.
    Staff in the Office of Special Education and Rehabilitative 
Services are also available to work, in collaboration with technical 
assistance and information providers, to assist Alaska. We believe that 
these staff would be particularly useful in helping the State to 
identify paperwork, policies, and procedures that may be unnecessary to 
meet Individuals with Disabilities Education Act requirements.
    I should also note that Alaska is eligible to apply for funds under 
the State Improvement grants program. This program, which was 
authorized by Congress in the Individuals with Disabilities Education 
Act Amendments of 1997, provides competitive grants to State 
educational agencies to assist them and their partners in reforming and 
improving their systems for providing special education, early 
intervention, and transitional services to improve results for children 
with disabilities. This program, rather than the Research and 
Innovation program, which focuses on producing and advancing the use of 
knowledge, would be the most appropriate source of support for 
implementing Alaskan reform initiatives.
                           distance learning
    Question. During recent meetings with Alaska's health care 
providers, I learned that there were numerous competing tele-health 
initiatives in the State. I told them all that Federal funding for all 
of these projects would be impossible unless they coordinated their 
efforts. I was concerned that they were duplicating efforts instead of 
complementing each other's services. $100,000 was provided to develop a 
statewide tele-health plan, and that effort is now underway.
    Upon further investigation, I am learning that the same problem 
exists within tele-education. Various school districts have a tele-
education plan. Public broadcasting is involved with different stations 
on various projects. Further, different campus sites within the 
University of Alaska even have competing programs. I would like to 
convene a similar task force for distance learning and get everyone to 
work together to develop a statewide plan.
    Please advise me of your distance learning grant programs that 
could be applied to begin the effort.
    Answer. The Department's primary sources of support for distance 
learning projects are the Star Schools and Learning Anytime Anywhere 
Partnerships programs. The Star Schools program supports projects that 
provide instructional course content for students and professional 
development activities for teachers through distance learning 
technology. The Learning Anytime Anywhere Partnerships program supports 
pilot projects using technology and other innovations to enhance the 
delivery of postsecondary education and lifelong learning opportunities 
for all citizens, in a variety of settings.
    In addition, grantees receiving funding under the Department's 
Technology Innovation Challenge Grants program can use those funds for 
distance learning activities. The Technology Innovation Challenge 
Grants program provides competitive 5-year awards to consortia that 
include at least one local educational agency with a high percentage of 
children living in poverty. Consortium members may also include other 
local educational agencies, State educational agencies, institutions of 
higher education, businesses, museums, libraries, academic content 
experts, software designers, and others. Also, local districts 
receiving competitive awards under the Technology Literacy Challenge 
Grants program can use those funds for distance learning activities.
Distance learning--learning anytime anywhere partnerships
    Our new program, Learning Anytime Anywhere Partnerships (LAAP) was 
funded for $10 million in fiscal year 1999. LAAP provides grants for up 
to 5 years to support pilot projects using technology and other 
innovations to enhance the delivery of postsecondary education and 
lifelong learning opportunities in all settings. The program requires 
partnerships including educational institutions, State and local 
governments, community organizations, and others. Application packages 
became available on January 26, 1999, and completed pre-applications 
are due by April 2, 1999. The Department anticipates making 25-30 
awards up to $500,000 each.
Distance learning--star schools
    The Star Schools program utilizes distance education to improve 
instruction in a variety of subjects and to serve disadvantaged 
students. Funds may be used to obtain telecommunications facilities and 
equipment, develop and acquire educational and instructional 
programming, and obtain technical assistance in the use of facilities 
and programming. To apply, applicants must form statewide or multistate 
telecommunications partnerships. Awards may be made for up to 5 years, 
with grantees required to provide matching funds.
Distance learning--FIPSE
    Another program, the Fund for the Improvement of Postsecondary 
Education (FIPSE), supports projects that encourage innovative reform 
and improvement of postsecondary education. In recent years, FIPSE has 
supported a Comprehensive Program that awards grants for a wide-range 
of activities that foster improvement in higher education. This year, 
FIPSE is supporting a Special Competition instead of the Comprehensive 
Program. Funded for $9.5 million in fiscal year 1999, this Special 
Competition will award grants up to $1.5 million to institutions of 
higher education and other public and private nonprofit institutions 
and agencies. Awards will be made in 14 different subject areas 
identified by Congress, including enhanced distance education and 
teacher training activities. Application packages became available on 
March 16, 1999, and statements of intent to apply are due by April 16, 
1999. Applications are due by April 30, 1999.
Enhanced distance learning--teacher training in technology programs
    Two additional programs enhance distance learning by supporting 
teacher training in technology. The newly authorized Teacher Quality 
Enhancement Grants awards competitive grants to States to improve the 
quality of their teaching force through reform activities including 
teacher licensing and certification, accountability, and recruitment 
for high-need schools. The Department provides a competitive preference 
to those applications that propose to reform State teacher 
certification to ensure that current and future teachers possess the 
necessary teaching skills and academic content knowledge--this includes 
certification in information skills. The Teacher Training in Technology 
program, first funded in fiscal year 1999, will also help to improve 
teacher quality by awarding grants to consortia of States, institutions 
of higher education, and others to provide new teachers with intensive 
training and support in technology. Research shows that most 
institutions of higher education do not prepare teachers adequately to 
use educational technology. This program helps to improve teacher 
quality by rectifying this shortcoming to ensure tomorrow's teachers 
can use technology effectively in the classroom.
State leveraging of education funds for enhanced distance learning 
        systems
    Several States have made a concerted effort to leverage the funds 
from various sources and to target specific needs with specific funds. 
Iowa, for example, has benefited from Technology Learning Challenge 
Fund (TLCF) and Star Schools grants to complete its fiber optic 
infrastructure throughout its 109 counties. Star Schools funds helped 
to build the infrastructure at the local level while TLCF funds were 
used primarily to support professional development activities.
    In Kentucky, on the other hand, Star Schools funds were used to 
develop high quality student programming, as a result of partnerships 
with Kentucky Educational Television.
    The Satellite Educational Resources Consortium (SERC) located in 
South Carolina, another Star Schools grantee, is an excellent example 
of several States pooling their funds together to develop excellent, 
high quality programming (some award-winning examples) that is then 
shared among its 23-State partnership of SEAs and public television 
stations. SERC States use their TLCF monies for professional 
development and some infrastructure redesign and use the Star Schools 
funds to support the demand for quality programming, content, and 
online resources.
    Alaska currently benefits from Star Schools funding in two ways. 
They receive Star Schools programming through Spokane, Washington for 
such courses as Workplace Literacy, Young Astronauts, and core 
mathematics and science courses. This year the University of Alaska 
will receive $800,000 to deliver natural resources management courses 
as a result of directed funds.
       parenting education--brain development in early childhood
    Question. As part of the informal Senate Brain Caucus, I have been 
fascinated by research that has been conducted during the ``decade of 
the brain.'' This Subcommittee held hearings last fall on the critical 
importance of brain development during the period from birth through 3 
years of age. That is the time when the brain sets the stage for all 
the future learning that occurs in life. Using a construction analogy, 
the brain builds either a small foundation or a big one depending on 
how much stimulation it receives--a small house or a huge skyscraper. 
The size of the learning foundation is established during those first 3 
years. The key is to teach parents, especially new parents, how to 
stimulate their babies by reading and talking to them from the day they 
are born. Failure to do so or even worse, negative stimulation could 
result in learning problems that are difficult to overcome.
    The Healthy Start Program in Alaska is seeking ways to incorporate 
parenting education into the classroom, including health classes. A GAO 
report indicates that children whose parents have participated in that 
program have higher high school graduation rates, higher grades, lower 
juvenile delinquency rates, and are more likely to go to college and 
enjoy greater success on every front later in life.
    Have you looked at this issue, and if not, would you consider 
working with Secretary Shalala on ways we could help educate parents 
and future parents on basic parenting skills?
    Answer. The Department is a part of the Early Childhood Research 
Working Group. This group is comprised of over 100 representatives from 
over 30 Federal agencies, across eight Federal departments, including 
the Department of Health and Human Services.
    The purposes of the Working Group are to: (1) share current 
research findings, priorities, and other information across Agencies; 
(2) provide staff with professional development opportunities; and (3) 
develop channels for collaborative funding activities.
    As a result of the working group meetings, several interagency 
activities have developed. For example, several agencies are planning a 
multi-year study of young children from very poor families. The 
children's developmental pathways from birth through early elementary 
school will be followed to determine factors that hinder and enhance 
the potential for school success by poor children.
                                 ______
                                 
                Questions Submitted by Senator Herb Kohl
          class size reduction initiative--allocation problem
    Question. As you know, I support legislation to hire 100,000 more 
teachers. However, I am concerned about one provision in both last 
year's and this year's legislation. It says that if a school district 
does not receive enough money to hire a full-time teacher, that 
district must form a consortium with other districts and pool their 
money together to hire a teacher.
    This simply won't work in rural Wisconsin--some districts are so 
small they qualify for less than $1,000; yet they are so geographically 
large that almost every child has to be bussed to the school. Many 
others only qualify for a few thousand dollars--a far cry from the 
average starting salary of a Wisconsin teacher. If these districts have 
to band together to hire one teacher, the only ``three Rs'' that 
teacher would deal with would be roads, railway tracks, and red tape.
    Does the Administration support fixing this problem and fixing it 
on a retroactive basis, so that money appropriated last year can be 
used by all school districts?
    Answer. Yes, the Administration does support providing school 
districts that receive a Class Size allocation that is less than the 
starting salary of a new teacher in that district with additional 
options beyond forming a consortium. We also would support allowing 
those additional options to apply to any funds received in fiscal year 
1999.
    Question. Would you support fixing it as a part of the Supplemental 
Appropriations bill, so that schools can use this year's money when it 
becomes available in July?
    Answer. The Administration would support the change mentioned above 
if it were included as a part of a Supplemental Appropriations bill.
                       teacher mentoring programs
    Question. I'd like to talk more about efforts to hire and retrain 
the best qualified teachers. Milwaukee Public Schools (MPS), in 
conjunction with the Milwaukee Teachers Education Association, have put 
together two successful teacher mentoring programs. The retention rate 
for teachers who participate is over 50 percent better than those who 
do not. However, while MPS hired 1,000 teachers last year, they only 
had enough money to provide mentors to 180 teachers. It seems to me 
that we could help schools expand their mentoring programs by providing 
additional funds.
    What is the Administration's position on the usefulness of 
mentoring programs?
    Answer. The Administration strongly supports induction programs for 
new teachers that focus on mentoring and other activities to help them 
strengthen their content knowledge and teaching skills. As you noted, 
these programs can also help to improve teacher retention rates, which 
is especially critical now that many school districts are experiencing 
teacher shortages.
  esea reauthorization--professional development and teacher mentoring
    Our proposal for the reauthorization of ESEA will likely include a 
program that consolidates Titles II and VI of the ESEA and the Goals 
2000 program in order to link explicitly State content and student 
performance standards with professional development. As under the 
current Title II authority, a portion of the money would flow to 
institutions of higher education (IHEs) and the remainder to local 
educational agencies (LEAs). For both the LEA and IHE parts, our bill 
will likely authorize authorities to help schools assist new teachers 
during their first 3 years in the classroom. Such efforts could include 
year-long mentoring and coaching by trained mentor teachers; team 
teaching with experienced teachers; time for observation of, and 
consultation with, experienced teachers; assignment of fewer course 
preparations; and provision of additional time for course preparation.
    Question. Would the Administration support an expansion of Federal 
funding for mentoring programs?
    Answer. We do not envision proposing funding specifically for 
mentoring programs. Our reauthorization proposal would give school 
districts flexibility in using Federal funds to address their 
professional development needs. Mentoring programs would be a major use 
of the funds, but not the only allowable one. A flexible authority, 
such as this, would give districts the ability to increase support for 
mentoring if such an increase meets their needs.
                           teacher diversity
    Question. I am also interested in programs that bring more people 
from diverse backgrounds into teaching. Coming from a business 
background, I believe that people from the private sector, particularly 
with expertise in math, science, or business, could also make good 
teachers. Unfortunately, it is difficult for mid-career professionals 
to leave their jobs for the 2-year period it would take to become 
teachers. Several proposals have been introduced to encourage States 
and school districts to create alternative teacher certification 
programs.
    Does the Administration support alternative certification?
    Answer. Our planned ESEA reauthorization proposal to consolidate 
Titles II and VI of the ESEA and the Goals 2000 program would allow 
States to use funds for developing alternative systems for teacher 
certification or licensure. We would strongly encourage them to develop 
systems that include the characteristics of high-quality alternative 
routes to certification that are described above.
``Troops to teachers'' initiative
    In addition to the funds that would be available through our 
reauthorization proposal, we are requesting $18 million for ``Troops to 
Teachers'' in our fiscal year 2000 budget request for the Fund for the 
Improvement of Education. This initiative will contribute to the 
Department's effort to help meet the need in the next decade for 2 
million new teachers who are appropriately prepared to assist the 
growing student population to meet high academic standards. This 
program began in 1993 as a Department of Defense response to military 
downsizing. It has enabled military personnel to capitalize on their 
experience, while providing a new source of teachers with 
characteristics that address current areas of need. The Department 
proposes to build on the successful model that the Department of 
Defense has developed to recruit and prepare qualified retired military 
personnel as teachers and to expand this type of ``alternative routes'' 
effort to civilians who are interested in transitioning to a teaching 
career.
        alternative routes to certification--rigorous standards
    Question. Specifically, what components must be included to make 
sure these programs are high quality?
    Answer. Because there are many talented Americans whose rich 
experiences would allow them to contribute significantly to the 
education of children, alternative routes to certification can be a 
good way to attract talented mid-career professionals to the 
profession, especially in shortage fields such as math and science. 
That is why the Administration supports the development of rigorous 
alternative routes into teaching. However, rich experiences and content 
knowledge themselves are not sufficient for an individual to be an 
effective teacher. Teachers need to know not only their content, but 
also how to teach that content. For this reason, alternative routes 
should help individuals to develop strong teaching skills and, 
ultimately, should measure whether the individual has the knowledge and 
skills to be effective.
    An alternative route that is high quality holds its candidates to 
the same standards as those for traditional candidates; it just 
provides a different route to meeting the standards. An alternative 
route should ensure that candidates have strong knowledge of the 
subject they will teach and knowledge of how children learn. It should 
also provide some means to assess candidates' effectiveness in a 
classroom setting through their prior experiences. When individuals are 
placed in a classroom, their teaching experiences should be heavily 
mentored during their first year as they learn to teach. They should be 
provided many opportunities to engage in training, to receive feedback, 
to have their teaching evaluated, and to work in diverse settings.
               special education grants to states request
    Question. One of the largest drains on school district budgets is 
the cost of special education. The Federal Government is supposed to 
pay 40 percent of these costs, but the President's budget only covers 
about 10 percent.
    Why has the Administration provided this lower amount?
    Answer. We believe that the legislative history surrounding the 
enactment of Public Law 94-142 in 1975, which served as the basis for 
the current Individuals with Disabilities Education Act (IDEA), 
indicates that members of Congress regarded the 40 percent as a goal, 
not a promise or commitment, and members acknowledged that the 
authorized amounts were not likely to be appropriated.
    No additional funds are requested for the Special Education Grants 
to States program. However, our request includes $4.3 billion for 
funding this program. Since fiscal year 1996, funding for Grants to 
States has increased by almost $2 billion, or 85 percent. We believe 
that the current level of funding provides an appropriate level of 
support given the fact that States have the primary responsibility for 
educating all children, including children with disabilities.
    There is a tendency to view the IDEA Grants to States program as 
the Federal program for providing assistance to States in serving 
children with disabilities. In fact, there are many Federal programs 
that assist States in serving these children, but they are not focused 
solely on children with disabilities. These programs include programs 
such as the Class Size Reduction program that helps schools hire highly 
qualified teachers and reduce class size; Eisenhower Professional 
Development State Grants that help ensure that teachers, including 
teachers of children with disabilities, have the content knowledge to 
help children achieve to high standards; and 21st Century Community 
Learning Centers that provide a safe environment and expand learning 
opportunities for children before and after school. Federal subsidies 
for school construction bonds that will be used to repair, renovate, 
and construct schools will help ensure that our school buildings 
enhance the teaching and learning of all children, including children 
with disabilities.
    With regard to programs that focus exclusively on children with 
disabilities, our request includes an the increase of $116 million. 
Most of the requested increases are for programs that will focus much-
needed attention on addressing the needs of young children with 
disabilities birth through age 9. Our research indicates that the 
earlier we meet the needs of children with disabilities, the better the 
results. These programs include Grants for Infants and Families (+$20 
million) to help States provide early intervention services for 
children with disabilities from birth through age 2 and their families, 
Preschool Grants (+$28 million) to help States provide special 
education services for children aged 3 through 5 with disabilities, and 
new Primary Education Intervention grants (+$50 million) that will help 
provide local educational agencies with the knowledge they need to 
improve results for young children with disabilities in the areas of 
reading and behavior.
    We believe that our request reflects the best combination of 
programs and funding to address the needs of all children.
                      funds for special education
    Question. If more money were available for education spending, 
would the Administration work for a larger increase for Special 
Education?
    Answer. We must always work within limited resources. The 
Administration must weigh many competing interests in determining 
Federal funding levels for various activities. The Administration would 
seriously consider increasing funding for Special Education if more 
money were available for education spending.
                                 ______
                                 
            Questions Submitted by Senator Dianne Feinstein
                        targeting title i funds
    Question. As I mentioned in my opening statement, I am concerned 
that in the Title I program, funds are not following the child and to 
me that should be the fundamental principle of the funding formula. I 
am particularly pleased that the authorizing law includes a provision 
that I worked on to require the Department of Education to allocate 
funds based on new child poverty data every 2 years. You have received 
this data and are trying to use it.
    Don't you agree that funds should follow the child?
    Answer. The Administration believes that, to provide the most 
effective services for children with the greatest educational needs, 
Title I must focus on the school as the unit of intervention, 
especially on schools with high concentrations of low-income children. 
These schools have the greatest need for Title I funds because they 
face the greatest challenges in educating their students to high 
standards. One challenge is that a high poverty rate has a negative 
impact on the achievement of all students in a school. In schools with 
a majority of poor students, all students are at risk of school 
failure.
    Consistent with this general framework for targeting Title I funds 
and services to children in the highest-poverty schools, Title I funds 
should be allocated to where the poor children are, not to where they 
were a decade ago. The whole purpose of updating the poverty data in 
the Title I formula is to reflect, in the allocations, demographic 
shifts in the number of poor children.
       title i allocations--use of biennial updated poverty data
    Question. Don't you agree that the updated census data helps to 
implement that principle and helps guarantee that funding reflects the 
actual number of children?
    Answer. Yes. Fair targeting depends on using the most current 
reliable data on the distribution of poor children. The Congress 
emphasized the importance of that principle in the 1994 reauthorization 
of Title I by basing allocations on poverty data that, beginning in 
1997, are updated every 2 years rather than once a decade. However, 
because the appropriations acts in 1998 and 1999 included a 100 percent 
hold-harmless provision for both Basic and Concentration Grants, most 
districts received about the same amount of Title I funds as in the 
prior year despite the use of the new poverty data.
                     title i hold-harmless language
    Question. Don't you agree that the ``hold harmless'' language 
violates that principle?
    Answer. Yes. The special language in the fiscal years 1998 and 1999 
appropriations acts included a 100 percent ``hold-harmless'' to ensure 
that each State and school district receive not less than its prior-
year Title I allocation. This hold-harmless, which applied to both 
Basic and Concentration Grants, largely prevented the change to the new 
poverty data.
    We strongly believe that special hold-harmless language should not 
be included in the appropriations bill, since the authorizing statute 
for Title I already provides a hold-harmless for Title I Basic Grants 
in an amount equal to between 85 and 95 percent of each district's 
prior-year Title I allocation, depending on the district poverty level. 
Inserting a 100 percent hold-harmless requirement prevents funds from 
flowing to districts that are gaining poor children, as documented by 
the updated data. The whole purpose of using updated data is to 
reflect, in the allocations, these population shifts. A basic principle 
in targeting should be to drive funds to where the poor children are, 
not to where they were a decade ago.
            title i allocations--use of updated poverty data
    Question. Do you support continuing to use the updated poverty data 
every 2 years?
    Answer. Yes. In order to target the funds fairly, it is important 
to use the most accurate and up-to-date data available.
    By requiring the use of updated data, Congress took something of a 
gamble in the 1994 legislation, because we (both the Congress and the 
Executive Branch) were uncertain that the Census Bureau could produce 
updated data that would be accurate enough for use in making Title I 
allocations. By 1998, however, the Bureau had developed a model for 
making updates that the National Academy of Sciences endorsed as 
superior to the older, decennial census data historically used for 
Title I allocations. With this model now available (and undergoing on-
going improvements by Bureau), we should continue to use updated data 
in the program.
          applying title i ``hold harmless'' to other programs
    Question. The Title I formula is used in parts of other Federal 
programs, such as Goals 2000, Eisenhower Professional Development, Safe 
and Drug-Free Schools, and Educational Technology. According to the 
Congressional Research Service, it has become apparent that you are 
applying the Title I ``hold harmless'' language in the fiscal year 1999 
appropriations bill to other programs, just repeating, in my view, the 
inequities and the violation of the principle that funds should follow 
the child.
    Are you applying the Title I ``hold harmless'' to other programs in 
making allocations to States? If so, why?
    Answer. For fiscal year 1999, like any other year, the Department 
is allocating Title I funds according to the statutory provisions 
governing the Title I formula, including the applicable hold-harmless 
provisions. State allocations under Title I have historically included 
a hold-harmless requirement with respect to Basic Grants. The 
difference for fiscal years 1998 and 1999, in particular, is that the 
appropriations acts have modified the hold-harmless provision to ensure 
that each school district and State receive an amount of Title I funds 
that equals not less than 100 percent of its prior-year allocation 
(under both Basic and Concentration Grants).
    Legislation for the other State-administered formula programs, 
including Goals 2000 State Grants, Even Start, Eisenhower Professional 
Development, Safe and Drug-Free Schools, Education for Homeless 
Children and Youth, and Title III technology grants, requires that a 
State's allocation under those programs be based, in whole or in part, 
on the share of funds the State receives (or received in the prior 
year) under Title I. Consistent with these requirements, the Department 
is allocating fiscal year 1999 funds for these programs to each State 
according to the State's share of Title I funds. As in every other 
year, that share includes any hold-harmless amounts that are included 
in the Title I formula.
                      california class size waiver
    Question. Yesterday, I wrote you in support of the request of 
California's school Superintendent and Governor to recognize my State's 
extraordinary efforts to reduce class sizes in the early grades and to 
make sure California gets all the funds due us under this important 
program. As you know, in California, grades K-3 are at 18.94 students 
per class, and grades 1-3 are just barely above 19. In her February 19 
letter, Superintendent Eastin asked you to substitute the number 20 for 
the current number 18 as the trigger to allow California to use funds 
for further class size reductions in grades one to three, to reduce 
class size in kindergarten or other grades; or to carry out teacher 
quality initiatives. We have made extraordinary efforts, in a State 
that has 5.6 million students. California has more elementary and 
secondary education students than 36 States have in total population, 
so I hope you can agree that these are huge efforts. The February 29, 
1999 San Jose Mercury News contains the following quote: ``It makes a 
lot of sense to me,'' Riley said after meeting [with Governor Davis], 
noting California has nearly reached the class-size reduction levels 
set for kindergarten through third grade.
    Can you assure me that you will give California full consideration 
of this waiver and recognize the advances we have made?
    Answer. I can assure you that my staff will give California's 
request for a waiver from certain program provisions careful 
consideration and that we are well aware of the progress the State has 
already made in reducing class size in the early elementary grades.
    Question. When will we have a decision?
    Answer. We expect to have a final decision in early April.
                            guns in schools
    Question. In 1994, I authored a provision requiring a 1-year 
suspension for bringing a gun to school. Your first report on this law 
categorized or quantified incidents, which is helpful, but it would be 
helpful to know if you think this law has cut down on guns in schools.
    Do you think the Gun-Free Schools Act (GFSA) has cut down on guns 
in schools?
    Answer. While no data are available that can precisely measure and 
isolate the effect of implementation of the Gun-Free Schools Act on the 
incidence of students bringing firearms to schools, preliminary data 
submitted by State educational agencies seem to indicate that fewer 
students are bringing firearms to schools, and anecdotal assessments of 
school security chiefs from several of the Nation's largest school 
districts appear to confirm this result.
    Preliminary data submitted by the States under the GFSA suggest 
that the number of students reported to have been expelled for bringing 
a firearm to school in the 1997-98 school year will be significantly 
lower than the 6,093 such expulsions reported for the 1996-97 school 
year. However, the Department has not yet received 1997-98 data from 
every State, or completed procedures to verify the data.
    Department of Education officials met recently in California with a 
group of school security chiefs representing some of the largest school 
districts in the country. The meeting included representatives from the 
school systems in Oakland, San Francisco, Long Beach, Los Angeles, San 
Bernardino, Pasadena, and Compton, as well as from other large school 
districts around the country. The chiefs consistently indicated that 
fewer students in their districts are bringing firearms to school.
    We believe that the GFSA has played an important role in reducing 
the number of students who bring guns to school. The GFSA has 
significantly increased awareness of this important issue among 
education officials at the State and local levels, and implementation 
of the GFSA has resulted in concrete actions by virtually every local 
educational agency (LEA) in the country to keep guns out of schools: 
under the GFSA, LEAs have adopted policies required by their State 
laws, and implemented the sanctions required by those policies. These 
actions have let students and parents know that school officials 
believe that children and firearms in a school setting are a dangerous 
mix that cannot be tolerated if schools are to remain safe and 
disciplined environments, conducive to learning.
                        other weapons in schools
    Question. The California Department of Education released their 
safe schools assessment on February 24 and reported that the number of 
guns seized fell for the second straight year, but there was a 16 
percent rise in the number of knives. There have also been reports of 
anthrax releases in the schools.
    Should we broaden the law to include other dangerous weapons, as we 
did in the Individuals with Disabilities Education Act (IDEA) law?
    Answer. We believe that the scope of the GFSA should continue to be 
limited to firearms and explosive devices, as under current law. While 
we are very aware of the danger of other weapons in the school 
environment, we have several concerns about broadening the requirements 
of the GFSA to include other weapons, such as knives.
    We are concerned about how a modification to the GFSA could be 
written to define and describe appropriately the other weapons that 
should be included in an expansion of the existing requirement. Recent 
news stories that have received extensive coverage seem to indicate 
that local attempts to define items to be included in a ``weapons'' 
policy have resulted in unintended consequences, including the 
expulsion of students for bringing fruit knives or other implements 
used as eating utensils. We also know from talking to security 
officials at local school districts that items commonly found in 
schools and never intended to serve as weapons (e.g. baseball bats, 
earrings) can be used to harm teachers and students.
    This difficulty, coupled with our very significant concern about 
the volume of expulsions that could result from such an expansion to 
the law, has led us to conclude that this issue is best left to the 
discretion of local school boards and educational officials. We believe 
that expelling students without providing them with educational 
services disconnects these troubled youth from caring adults, takes 
away their hope for the future, and leads them to a lifestyle of 
increased crime and delinquency.
    The GFSA does not limit the authority of States or LEAs to adopt 
policies requiring the expulsion of students for other weapons 
violations, a fact that the Department clearly explains in its non-
regulatory guidance on implementation of the GFSA.
    Question. Should we try to address biological weapons in the 
schools?
    Answer. We plan to carry out some activities on this topic in 
conjunction with the U.S. Department of Justice, including development 
of materials and provision of technical assistance; however, we do not 
believe it is necessary to broaden the scope of the GFSA to address 
biological weapons in schools. We are not aware of any instances where 
anthrax or other biological weapons have been brought to, or released 
in, a school setting. Fortunately, it appears that it would not be easy 
for students to acquire anthrax or other biological material that could 
be used as a weapon. Officials from the Federal Bureau of Investigation 
(FBI) participated in the recent school security chiefs meeting to 
discuss how to deal with possible terrorist activity (including threats 
related to biological weapons) in schools. FBI officials encourage 
local school officials to become more closely linked with existing 
disaster preparedness and planning activities in their communities so 
that they will be familiar with appropriate procedures in the event of 
an incident.
           request for zero funding for the title vi program
    Question. The President's Budget requests no funding for the Title 
VI block grant program, yet California schools rely on the flexibility 
of Title VI funds. For example, Fresno Unified School District used 
funds for a summer school program designed to help students 
experiencing academic difficulty. Parents and the community became 
involved, teachers received training and administrative support, and 
students made measurable gains in both reading and mathematics. Also, 
Title VI funds helped strengthen and expand Manteca Unified School 
District's staff development program for new teachers called ``Good 
First Training,'' which is focused on a balanced approach to literacy. 
Training sessions included live demonstrations and opportunities for 
immediate practice.
    Given the flexibility of Title VI, why did you request zero funding 
for the program?
    Answer. The Administration believes that the Title VI program is 
not well designed to support the types of State and local efforts that 
can result in real improvements in teaching and learning. Findings from 
the most recent evaluation of the former Chapter 2 program, Title VI's 
predecessor, suggest that programs that offer the flexibility of Title 
VI, but provide greater accountability, have a better chance of 
effecting real change in the classroom. For example, the evaluation 
found that program funds were used by fewer than half of the States to 
support such reform efforts as revising and developing standards for 
student performance, developing alternative measures of student 
achievement, or encouraging public-private partnerships. Districts were 
even less likely than States to use Chapter 2 funds to support 
education reform efforts. Although more than half of all districts 
reported some systemic reform efforts, fewer than one-fourth of them 
used Chapter 2 funds to support these activities.
    The evaluation also found that local educational agencies (LEAs) 
tended to use their Chapter 2 expenditures for purchases of 
instructional materials rather than for educational reform activities. 
In addition, States and LEAs sometimes used Chapter 2 funds for 
activities and programs that were not directly related to classroom 
instruction; for example, LEAs often purchased equipment for 
administrative use, and SEAs used Chapter 2 funds for various 
administrative activities. The evaluation also found that the majority 
of activities supported by Chapter 2 funds would have continued without 
Chapter 2, because these funds typically constituted a small percentage 
of any program's funding.
    The Department believes that a more effective way to utilize scarce 
resources lies in targeting funds on comprehensive systemic reform and 
areas of high need. For example, programs under the Goals 2000: Educate 
America Act provide almost the same flexibility as Title VI, but make 
the critical link between expenditures and educational reform that 
Title VI does not. States are using Goals 2000 funds to establish 
challenging academic standards and to coordinate their curriculum 
frameworks, student assessment programs, and other aspects of their 
educational systems to help children achieve to the State standards.
ESEA Reauthorization--consolidation proposal
    The Administration's reauthorization proposal for ESEA will likely 
consolidate Titles II and VI of the ESEA and the Goals 2000 program to 
explicitly link State content and student performance standards to 
professional development activities. This program would allow States 
and school districts to continue to develop content and student 
performance standards and to develop, implement, and improve 
assessments and curricula that are aligned with those standards. The 
program also would focus strongly on professional development that is 
content-based, sustained, collaborative, and tied to State and local 
standards.
    Program funds at both the State and local levels would be used for 
these activities. We believe that such a program would give States, 
school districts, and institutions of higher education the flexibility 
they need to improve instruction in our Nation's classrooms and to 
continue implementation of challenging performance standards that are 
designed to raise student achievement.
                            social promotion
    Question. President Clinton will send to Congress a significant 
reauthorization of the ESEA. Accountability is a major part of the 
President's education proposal. Part of the message of accountability 
is ending the practice of social promotion. I support ending the 
practice of social promotion. I also recognize the importance of 
implementing policies that improve teacher training and prepare 
students to graduate.
    Specifically, how do you propose we ensure that schools and 
teachers are accountable for student achievement?
    Answer. The President's call for an end to social promotion is 
designed to tell students that ``performance counts,'' and to encourage 
districts and schools to take aggressive action to help all students 
meet promotion standards on time. We are not encouraging school 
districts to end social promotion by retaining students in grade; 
instead, we will be asking school districts to educate children to high 
standards. That is why we have pushed so hard for programs like Class 
Size Reduction, the Reading Excellence Act, and the 21st Century 
Community Learning Centers after-school initiative, which help to 
minimize the number of children at risk of retention in grade.
    Our approach to accountability will include a range of options for 
helping to ensure that schools and teachers help all students meet high 
standards required for promotion to the next grade. For example, our 
reauthorization proposal would give school districts greater 
flexibility if they are moving in a positive direction for all 
students. But if a school district is not progressing, State and local 
officials will need to find out why and then take appropriate steps to 
improve academic achievement. They should look at teacher training, 
student achievement, discipline in the school, the public reporting of 
how well the schools and school districts are doing, and the offer of 
special help to students who need the assistance. We will help, prod, 
nudge, and demand action, if necessary.
    Effective strategies to end social promotion include early 
identification and intervention for students who need additional 
help(including appropriate accommodations and supports for students 
with disabilities and students with limited English proficiency. After-
school and summer-school programs, for example, can provide extended 
learning time for students who need extra help to keep them from having 
to repeat an entire grade. We believe that States should target their 
efforts at key transition points, such as 4th, 8th, and 10th grades, 
and should use multiple measures, such as valid assessments and teacher 
evaluations, to determine if students have met high standards required 
for promotion to the next grade.
ESEA Reauthorization--provisions to end social promotion
    Our reauthorization proposal will take into account these and other 
elements that are necessary for a successful policy to end social 
promotion. We are considering requiring that each State and school 
district receiving ESEA funding adopt a policy and plan to end social 
promotion, and that the policy ensure that children at risk of 
retention in grade be provided early intervention support to achieve 
better results. Likewise, we anticipate requiring districts to have 
carefully developed discipline policies in place. While we expect to 
provide substantial flexibility in how a State or local district 
addresses these matters, we also want to create meaningful provisions 
to address the problem. The Department's role will be to ensure that 
each State and school district that receives ESEA funds has addressed 
the issue in a meaningful way.
                       federal education funding
    Question. Over the last 3 years, Federal education funds have 
increased by approximately $10.4 billion. However, Federal funding of 
elementary and secondary education is still only 6 percent.
    Do you think the Federal Government's spending on education is 
adequate?
    Answer. The Federal investment in education must be considered in 
the context of the overall Federal budget, including such concerns as 
meeting the discretionary caps and ensuring the soundness of our Social 
Security and Medicare systems. With that caveat, I favor increased 
Federal resources for education in areas of national priority where we 
can ensure accountability for results.
    Question. How much would you increase the funding levels if you had 
your choice without budget constraints?
    Answer. I don't have a specific total in mind, but I would consider 
significant increases to expedite the hiring of 100,000 teachers to 
reduce class sizes in the early grades, to improve services under the 
Individuals with Disabilities Education Act, to raise the maximum Pell 
Grant award for low-income postsecondary students, and to improve 
teacher quality.
                         fifth year pell grants
    Question. Last year, with your support, Congress adopted my 
amendment to allow you, the Secretary, to award on a case-by-case basis 
Pell Grants for disadvantaged students for the fifth year of teacher 
education required in California to get a teaching credential. This 
could enable 12,000 disadvantaged students to become teachers in my 
State at a time of great need.
    What is the status of implementing this change, and is it now 
available to students? If not, when will it be?
    Answer. All regulations related to Title IV of the Higher Education 
Act (HEA) are now subject to the requirements of both negotiated 
rulemaking and the master calendar (sections 492 and 482, 
respectively). Consequently, this new provision which expands Pell 
Grant eligibility for students enrolled in non-graduate 
postbaccalaureate teacher certification programs is currently under 
discussion as part of ongoing negotiations with the higher education 
community. Final regulations are expected by November 1, 1999, to be 
effective for the 2000-2001 award year.
    However, we have also taken steps to implement this provision for 
institutions and their students starting with the current (1998-1999) 
award year. We have provided both the University of California and the 
California State University systems with information on what their 
institutions must do in order for their students to take advantage of 
this new provision in the current year. More specifically, we have 
provided both university systems with ``workarounds'' for the Title IV 
application processing system to enable their students, who would 
otherwise be ineligible for Pell Grants because they have already 
obtained baccalaureate degrees, to receive Pell Grants (assuming all 
other eligibility criteria have been satisfied) this year.
    The Title IV application processing system will be modified for the 
1999-2000 award year so that the current ``workaround'' will be 
unnecessary.
             student loan defaults--study of few borrowers
    Question. Congress also accepted my amendment to require the 
Department to do a study of student loan default calculations because 
the community colleges in my State said that the current method makes 
it appear that they have a very high default rate when they have just a 
few borrowers. Your study is due on September 30, 1999.
    What is the status of that report; will we get it on time?
    Answer. The Department is currently conducting the analysis as 
requested and expects to submit the report on or before September 30, 
1999.
                          bilingual education
    Question. Many believe that bilingual education, instead of being 
the transition to English as it was intended, has delayed students from 
learning English.
    Do you think Bilingual Education works?
    Answer. The Department believes that the vast majority of projects 
we assist under the Bilingual Education Act do a good job of teaching 
English to limited English proficient students and assisting them to 
achieve to high academic standards. Projects funded under the Federal 
Bilingual Education Act are by law given considerable latitude in 
designing a program that best meets the needs of the particular 
students served by the grant. Some of our projects incorporate the use 
of the native language in the instruction of academic subjects while 
students learn English, an approach generally known as bilingual 
education. Other projects use only English for instruction. The 
majority of our grantees combine approaches in ways that best meet 
local needs. One of the great strengths of the current statute is that 
it permits us to fund a wide range of instructional approaches.
          esea reauthorization--bilingual education proposals
    Question. Do you plan major changes in your ESEA reauthorization 
proposal?
    Answer. Our current thinking is to propose a number of changes to 
the current statute to incorporate the Department's goal that limited 
English proficient students become proficient in English within 3 
years. We also expect to make proposals to increase project 
accountability and to make the program more effective in meeting the 
educational needs of the Nation's fast-growing limited English 
proficient student population.
   achievement standards for english for limited english proficient 
                                students
    Question. Do you think States should develop achievement standards 
for students learning English?
    Answer. In principle, limited-English proficient students should be 
held to the same high standards expected of any other students. These 
standards should address both the acquisition of English and the 
mastery of academic content area, such as math or reading. In practice, 
it is important for States to proceed carefully when developing 
achievement standards for English for limited English proficient (LEP) 
students because of the many unique variables associated with this 
population, including but not limited to, the length of time a LEP 
student has been in schools and the student's literacy skills in the 
native language. Model standards for teaching English as a second 
language are published by the Teachers of English to Speakers of Other 
Languages group.
                immigrant education program--flat budget
    Question. Immigrant students have many needs. Many have had little 
or severely interrupted schooling in their home countries; they often 
live in poverty; reside in multiple family dwellings; speak little 
English; and are facing major adjustments. Your budget requests only 
$150 million, the same as we appropriated last year. This works out to 
$180 per immigrant student in California. This does not begin to 
address their needs, and immigration is, after all, a Federal 
responsibility.
    Why haven't you requested more?
    Answer. In response to the Administration's proposals, Congress 
doubled funding for this program in fiscal year 1997 from $50 million 
to $100 million and increased it by another $50 million in fiscal year 
1998. Last year the number of eligible students served by this program 
declined by 65,000. We agree with your assessment of the needs of these 
students, but do not believe that further increases in Immigrant 
Education funding are warranted at this time.
          other program funds for educating immigrant children
    Question. Don't we need to put more resources into helping these 
children learn and become productive?
    Answer. We need to make sure there are sufficient resources to 
ensure that immigrant students learn and become productive. However, we 
do not believe that the Immigrant Education program is the best vehicle 
for ensuring this result. In fiscal year 2000 we propose a $320 million 
increase in Title I funds and a $35 million increase in funding for the 
Bilingual Education program. These programs serve large numbers of 
immigrant students and are a better investment in improving educational 
services for these students than further increases in Immigrant 
Education.
                school construction needs in california
    Question. I applaud your school construction initiatives, coming 
from a State that has enrollment projections at three times the 
national rate. After passing a school bond last fall, we will need $26 
billion over the next decade. California's construction costs are 
higher than many States. Seismic requirements add 4 percent to the cost 
of a school.
    Will you take these factors into consideration in awarding school 
construction grants?
    Answer. Under the Administration's proposal, federally subsidized 
bonds, rather than grants, would be used to support the construction, 
rehabilitation, or repair of public schools. States and some school 
districts would be allocated these bonds. While grants would not be 
provided, the Administration's proposal includes a provision that would 
enable the Secretary of Education to take school construction needs 
into account when distributing a portion of the bond authority.
    The bonds would be subsidized by Federal tax credits, provided to 
bond holders, that would be approximately equal to the interest payment 
on a taxable bond. All States and the 100 school districts with the 
largest number of children in poverty would receive direct allocations 
of this bonding authority. The bonding authority would be distributed 
to States and school districts using a formula based on their share of 
Title I funds. In addition, the proposal includes a provision for the 
Secretary of Education to allocate a portion of the subsidized bonds 
for up to 25 additional school districts that are in particular need of 
assistance. Need would be determined by a low level of resources, a 
high level of enrollment growth, and other factors the Secretary 
determines appropriate. The Secretary could consider construction costs 
in certain regions when selecting these 25 school districts.

                          subcommittee recess

    Senator Specter. The subcommittee will stand in recess to 
reconvene at 11 a.m., Tuesday, March 23 in room SD-192. At that 
time we will hear testimony from Hon. Alexis Herman, Secretary 
of Labor.
    [Whereupon, at 10:40 a.m., Wednesday, March 3, the 
subcommittee was recessed, to reconvene at 11 a.m., Tuesday, 
March 23.]


  DEPARTMENTS OF LABOR, HEALTH AND HUMAN SERVICES, AND EDUCATION, AND 
          RELATED AGENCIES APPROPRIATIONS FOR FISCAL YEAR 2000

                              ----------                              


                        THURSDAY, MARCH 23, 1999

                                       U.S. Senate,
           Subcommittee of the Committee on Appropriations,
                                                    Washington, DC.
    The subcommittee met at 11 a.m., in room SD-562, Dirksen 
Senate Office Building, Hon. Arlen Specter (chairman) 
presiding.
    Present: Senators Specter and Gorton.

                          DEPARTMENT OF LABOR

                        Office of the Secretary

STATEMENT OF HON. ALEXIS M. HERMAN, SECRETARY

               opening statement of Senator Arlen Specter

    Senator Specter. Good morning, ladies and gentlemen. The 
hour of 11 o'clock having arrived, we shall proceed with the 
Appropriations Subcommittee on Labor, Health and Human 
Services, Education.
    We will await momentarily the arrival of the Secretary. 
[Pause.]
    Now that we have waited for a moment, we will issue a 
subpoena. [Laughter.]
    In the criminal courts in Philadelphia, at this point the 
judge would send some bailiff into the courtroom's corridor to 
see if the parties or witnesses were in the corridor. [Pause.]
    Good morning, Madam Secretary.
    Secretary Herman. Good morning, Mr. Chairman.
    Senator Specter. We have just forfeited $500 million a 
minute----
    Secretary Herman. Oh, my goodness. [Pause.]
    Senator Specter [continuing]. Which, in light of your 
magnificent red dress, will be reinstated promptly.
    Secretary Herman. Thank you very much.
    Senator Specter. This morning, the Subcommittee on Labor, 
Health and Human Services, Education will continue its hearings 
on the President's fiscal year 2000 appropriations request.
    We are pleased, once again, to welcome the distinguished 
Secretary, Hon. Alexis Herman. The department's budget request 
for discretionary spending for fiscal year 2000 totals $11.6 
million, an increase of $600 million, or 6 percent, over last 
year.
    As you can see from the chart on the right (indicating), 
there are difficulties faced with the proposed savings of some 
$18 billion in increased fees, taxes, and mandatory savings 
proposed by the President.
    The second chart identifies the $18 billion in offsets, 
most significantly the $8 billion in Federal tobacco revenues, 
which are evanescent, illusory, and really gone, and a 
reduction of $6.8 billion in mandatory spending.
    We have grave difficulties, but we will do our best to 
tackle them. We appreciate the cooperation of the distinguished 
Secretary of Labor in our open lines of communication and her 
efforts to be of assistance, with the reciprocal efforts of 
this subcommittee and the full Congress to be of assistance to 
the Secretary in her important work.

               summary statement of Hon. Alexis M. Herman

    Welcome. Your full statement will be made a part of the 
record. We will not use the lights. The floor is yours.
    Secretary Herman. Thank you very, very much, Mr. Chairman. 
As always, we thank you for your support of our work.
    Permit me to make a brief opening statement and, of course, 
at that time I will be happy to answer any questions that you 
may have.
    To you, Mr. Chairman, let me say that it is an honor for me 
to join you once again and to have this opportunity to discuss 
the fiscal year 2000 appropriations request for the Department 
of Labor--a budget that is designed to close the skills gap, 
open the doors of opportunity and meet the Nation's challenges 
in a new economy and a new century.
    As we look to that agenda, I want to begin by thanking all 
of the members of this subcommittee who are helping us develop 
the right strategies to better the lives of working families. 
Our request for appropriations for fiscal year 2000 builds on 
our progress together.
    Specifically, the department's fiscal year 2000 budget 
request totals $39.6 billion, of which $13.3 billion is subject 
to the annual appropriations process and is now pending, Mr. 
Chairman, before your subcommittee.
    The request for discretionary programs is $11.6 billion in 
budget authority, which is $626 million above the fiscal year 
1999 level.
    Against the backdrop of our strong economy, I have set 
three strategic goals for the Department of Labor: a prepared 
workforce to ready all Americans for the opportunities in the 
new economy; a secure workforce to insure that no one is left 
behind; and quality workplaces, ones that are safe, healthy, 
and fair, meaning free of discrimination.
    When I speak of the challenge of a prepared workforce, we 
know that, in spite of record low unemployment, millions of 
Americans are having difficulty finding new jobs or moving up 
the career ladder. Every day, employers tell me that they are 
having trouble finding qualified workers. But, as Secretary of 
Labor, I have often said that we don't have a worker shortage 
in this country but we do have a skills shortage. We need to 
close that skills gap and open new doors for working families.
    That is why our budget includes for the fiscal year 2000, 
funding to help States and local communities implement the 
Workforce Investment Act. We are also seeking $368 million for 
what we call the Universal Re-employment Initiative. We propose 
to reauthorize the Welfare to Work Program in fiscal year 2000 
and we want to put a special emphasis on noncustodial parents, 
most of whom are fathers.
    We propose to continue our $250 million investment in Youth 
Opportunity Grants, to reduce unemployment in high poverty 
areas for our young people. We don't have a person to waste in 
this country let alone, Mr. Chairman, a full generation to 
lose. We especially appreciate your leadership and your 
commitment in this area.
    As we prepare workers, we must also preserve and expand the 
economic security of working families. So my second strategic 
goal is insuring a secure workforce.
    To meet this challenge, our budget includes $11.8 million 
to increase pension plan and health coverage. We want to reward 
work and raise the minimum wage by $1 an hour over the next 2 
years, and we are committed to a strong and enforceable 
Patients' Bill of Rights.
    My final strategic goal is fostering quality workplaces, 
ones that are safe, healthy, and fair. Our budget invests in 
innovative safety and health programs in the Occupational 
Safety and Health Administration and the Mine Safety and Health 
Administration to protect workers, inform employers, and 
enforce our laws. We are moving forward to develop a proposed 
ergonomics standard this year.
    We have also targeted abusive and exploitative child labor 
both at home and abroad through a comprehensive strategy of 
enforcement, education, and partnership.
    I want to congratulate Senator Harkin and to thank him for 
his leadership in this area. As you know, we are now the leader 
in the ILO's program for the elimination of child labor and we 
are grateful for the $30 million provided by Congress last 
year. We are proposing to continue that level in fiscal year 
2000.
    I am also committed to working with the ILO and all of you 
on a new initiative to improve labor standards around the 
world. We are requesting $35 million for this effort.
    Here and at home, we must also step up our efforts to 
insure that women and men earn equal pay for equal work. That 
is why the President's Equal Pay Initiative includes $4 million 
to invest in our efforts to increase outreach, education, and 
technical assistance in this area.
    Above all, we need strong enforcement of all of our laws, 
not only to ensure equal pay for equal work but, to end pay 
discrimination, and to see that women have equal opportunity in 
all levels of the workforce.
    That is a very broad sketch of our agenda: a prepared 
workforce, a secure workforce, and quality work places. I know 
that even though we have three strategic goals at the Labor 
Department and many initiatives within each, there is only one 
way to succeed--not as separate agencies but as one Department.

                           prepared statement

    This is why I take very seriously our strategic management 
process and GPRA for managing for results.
    I look forward to working with you and with all of the 
members of this committee on these important initiatives to 
improve the lives of America's working families.
    Now I will be happy to answer any questions that you have, 
Mr. Chairman. Thank you very much.
    [The statement follows:]
                 Prepared Statement of Alexis M. Herman
    Mr. Chairman and Distinguished Members of the Subcommittee: I am 
pleased to be here with you today to discuss my fiscal year 2000 
request for appropriations for the Department of Labor.
    My request for appropriations for fiscal year 2000 builds on the 
successes of the past six years. Under the leadership of President 
Clinton, the American people are enjoying the first budget surplus in 
30 years. This Administration has presided over the longest peacetime 
economic expansion in our history. Over 18 million new jobs have been 
added. Wages are rising at more than twice the rate of inflation. 
Welfare rolls are down, while home ownership is up. Unemployment is at 
its lowest peacetime rate in over 40 years.
                 helping working families manage change
    Though the economy is strong, the dynamic forces of technology, 
globalization, and competition are sending changes through the 
workplace. Large firms, which provided stable employment, and a stable 
climate for regulation and enforcement, are now complemented by a 
dynamic world of small and medium-sized business startups, often in new 
lines of industry. Many new jobs are in these smaller firms, and many 
new workers now work in them. We must help working families as they 
attempt to adapt to these changes.
               addressing workers' problems strategically
    Against this backdrop we are preparing for the challenges of the 
21st century. I believe that government must be fiscally responsible as 
well as dedicated to giving people the tools they need to succeed. With 
this in mind, I have set three strategic goals for the Department of 
Labor: promoting a prepared workforce, a secure workforce, and quality 
workplaces. Those overriding goals are based on underlying value--
opportunity and responsibility, community and family, justice and fair 
play. Let me explain.
    A Prepared Workforce.--My budget request reflects one of the 
President's top priorities: investing in education and training to 
ensure that every American has the schooling and the skills to succeed 
in the increasingly competitive global economy. The Workforce 
Investment Act (WIA), incorporating the President's principles of job 
training reform, expands the One Stop system of streamlined service 
delivery to job seekers and employers, empowers customers with the 
resources and information to select training that meets their need 
through Individual Training Accounts and ``Consumer Reports'' on 
training provider performance, and authorizes Youth Opportunity Grants, 
to help boost employment among young people living in high poverty 
urban and rural areas. WIA was a bipartisan effort and enjoys continued 
bipartisan support. It requires that all States be fully operational by 
July 1, 2000. It is essential that adequate funding, as proposed in my 
fiscal year 2000 budget request, be provided to assure States' and 
local communities' success in implementing this key reform.
    In the new economy, and on the edge of a new century, education 
cannot end with a high school diploma, or even with a college degree. 
Now, education must mean lifelong learning and continued development of 
new skills.
    A Secure Workforce.--We receive thousands of letters from people 
who discover after they retire that they do not have the retirement 
benefits they expected. This is one reason I believe it is critical 
that we step up our efforts to ensure that all Americans are 
economically secure after they retire. Employment-based pension and 
health benefits are the foundation of family security.
    I am troubled by the fact that only about one-half of all full-time 
workers in the private sector have pension coverage. Three-quarters of 
workers in small businesses are not covered by a pension plan. 
Increasing access to our private pension system and assuring that 
private pensions, health care, and other employee benefits are secure 
and properly administered are among my most important priorities and 
are addressed by this budget. Several initiatives have been designed to 
achieve significant progress in helping to promote an economically 
secure workforce, such as safeguarding pensions and health care plans 
which I will describe in more detail later in my statement.
    Finally, a secure workforce requires a fair minimum wage. Today, a 
full-time minimum wage worker earns approximately $10,700--$2,900 below 
the poverty level for a family of three. In the midst of the greatest 
peacetime expansion in the Nation's history, this is unacceptable. A 
hard day's work deserves a fair day's pay. We must raise the minimum 
wage by $1 an hour over the next two years. I hope that we can work in 
a bipartisan fashion to enact this legislation.
    Quality Workplaces.--My third goal is to guarantee every working 
American a safe and healthful workplace with equal opportunity for all. 
If an employer's practices threaten workers' safety and health, 
discriminate on the basis of gender, race, color, national origin, 
religion, veterans' status, or disability, or deprive workers of fair 
wages, then tough enforcement becomes a necessity. Our ultimate goal, 
however, is compliance with employment laws. My emphasis is to ensure 
an appropriate balance of fair and consistent enforcement, compliance 
assistance, training and cooperative partnerships. I am also committed 
to improving working conditions at home and abroad by aggressively 
working toward the elimination of abusive child labor and by promoting 
international core labor standards, which I believe will enhance 
economic growth and stability abroad.
         gaps between skilled and unskilled workers still exist
    As I mentioned earlier--unemployment is at its lowest level in a 
generation. Be they young or old, women or men--many more Americans who 
want a job can find one. That's good news for working families.
    However, the continuation of a large gap in employment and earnings 
between less-skilled under-educated workers and the rest of the labor 
force is well-documented, and must be addressed if America aspires to 
be a Nation where hard work is rewarded fairly.
    The Administration has instituted policies that have helped to 
begin narrowing this gap, but more remains to be done.
    In addition to the wage gap, research shows that there are 
continuing gaps in other important aspects of workers' lives--in 
training, benefits, and working conditions.
    Not that long ago, some policy and program analysts held that non-
wage benefits and working conditions acted as a leveling influence on 
wage gaps. Now, we see that benefits and better working conditions tend 
to be associated with higher paying jobs--in other words the gap in 
real wages is actually wider when we include benefits in the 
calculation. While highly skilled, educated workers have enjoyed the 
benefits of economic growth, low skilled, low wage workers have not 
kept pace. And so I want to be clear that workers also experience 
disparities in other areas--safe and healthful working environments, 
fair and equal opportunities and in workers' rights.
    My strategic goals of promoting a prepared workforce, a secure 
workforce and enabling workers to perform in high quality workplace 
environments are intended to help close these gaps.
    I believe that the Department's budget request is both innovative 
and responsible--it takes account of the dramatic changes that continue 
to sweep through the economy, and proposes ways to help America's 
working families succeed in the new environment. It reflects my 
priorities to provide assurance that all workers have the opportunity 
to find and hold jobs, under high quality working conditions, with good 
wages, safe pensions, health benefits, and opportunities to improve 
their skills.
    For these purposes, the Department's fiscal year 2000 budget 
proposals total $39.6 billion, of which $13.0 billion is subject to the 
annual appropriations process and is now pending, Mr. Chairman, before 
your Subcommittee. The request for discretionary programs is $11.6 
billion in budget authority, which is $0.6 billion above the fiscal 
year 1999 level.
          fiscal year 2000 budget proposals--closing the gaps
    My budget request for fiscal year 2000 proposes several programs 
and innovations, all of which are focused upon narrowing or closing the 
gaps in wages, benefits and working conditions.
Closing the skills & wages gap
    I am proposing several programs to address the wage gap and advance 
my goal to promote a prepared workforce.
            Education and training
    Despite the low overall unemployment level, there are still pockets 
of Americans who want to work but have difficulty finding new jobs. At 
the same time, employers across the country tell me they cannot find 
qualified workers. I don't believe we have a worker shortage. Instead, 
we have a skills shortage. I believe we must give Americans who want to 
work the skills to ensure they can get and keep a decent job.
    In fiscal year 2000 I propose to make substantial progress toward 
creating a 21st century reemployment system. My proposal would ensure 
that we move toward: (1) helping all dislocated workers who want and 
need services with resources for training or to find new jobs; (2) 
expanding and enhancing the quality of employment services available 
for workers receiving UI and other job seekers who have lost their 
jobs; and (3) ensuring that any job seeker has access--in person or in 
the rapidly expanding world of electronic communication--to a core set 
of employment-related services through One-Stop Centers. My budget 
includes an increase of $368 million for a Universal Reemployment 
Initiative as a first step toward achieving this goal.
    For assistance to Dislocated Workers, I am requesting a total of 
$1.6 billion, an increase of $190 million, to provide readjustment 
services (including job search assistance), skill training and related 
services to help an estimated 858,500 dislocated workers find new jobs 
as quickly as possible. This is the initial downpayment on a five-year 
investment to ensure that all dislocated workers, who need it, receive 
assistance.
    Included within the $190 million increase is $40 million to provide 
dislocated worker training and job placement services in industries and 
occupations experiencing skill shortages. Although funding is requested 
now for this program, legislation will be proposed to finance it 
through fees paid by employers applying for foreign workers through 
labor certification programs.
    Also in fiscal year 2000, I am requesting $53 million for 
Reemployment Services Grants to State Employment service agencies. 
These grants will provide funds for increased reemployment services to 
unemployment insurance claimants to ensure that all unemployed workers 
who need help to become reemployed will get the help they need. The 
increase will target staff assisted services to insured unemployment 
claimants, providing early intervention and immediate referrals to 
suitable job openings to help them get jobs faster reducing their 
period of unemployment and benefit costs. For those in need, State 
Employment Service staff will provide customized services including 
workshops, job search assistance and screening for referrals to 
training or other support services.
    I am proposing to continue development of a One Stop Center System, 
as authorized by WIA, to transform a fragmented array of employment and 
training programs into an integrated service delivery system for adults 
seeking to advance their careers. The fiscal year 2000 request is $149 
million, which includes a $65 million set of initiatives to develop new 
ways to provide employment-related information through America's Labor 
Market Information System--an essential part of the One-Stop service 
delivery system that is now required in the WIA. Some examples of new 
ways we intend to provide services are a ``talking'' America's Job Bank 
for the visually impaired, mobile service centers for rural areas, a 1-
800 number providing the entire customer base of the workforce 
investment system with information on public workforce services 
available at a location most convenient to them, and continued 
enhancements in America's Job Bank, America's Talent Bank, and 
America's Career InfoNet.
    The fiscal year 2000 budget also includes $10 million for the 
second year of the joint Labor Education Learning Anytime, Anywhere 
Initiative to enhance and promote learning opportunities outside the 
usual classroom settings via computers and other technology for all 
adult learners.
    I am also proposing an additional $10 million for the new America's 
Agricultural Labor Network (AgNet). I view this as an important step in 
assuring U.S. farmworkers have increased access to jobs, better wages 
and working conditions. I see AgNet as a resource for growers to find 
domestic farmworkers instead of being reliant on international labor 
markets. AgNet would automatically be available through local 
libraries, unions, community-based organizations, State Employment 
Security Agencies and Department of Agriculture extension offices. 
Basic job information from AgNet also would be available in ``America's 
Job Bank.''
    In fiscal year 2000, I am also requesting $50 million for new Work 
Incentive Grants. This is part of the President's comprehensive 
initiative to provide economic opportunities for people with 
disabilities. This will provide competitive grants to partnerships of 
organizations in every State, including organizations of people with 
disabilities, to help One-Stop Career Centers and Workforce Investment 
Boards provide a range of high quality services to individuals with 
disabilities to allow them to return to work or obtain employment.
    As another important piece for closing the wages and skills gap, I 
am proposing an fiscal year 2000 level of $2.8 billion for the 
Department's Youth Programs, a net increase of $68 million above fiscal 
year 1999.
    Included in the request is $1 billion for Youth Activities, 
authorized by WIA. This program replaces Job Training Partnership Act 
Youth Training Grants and Summer Youth Employment and Training with a 
single funding stream that provides local flexibility to support a wide 
range of activities and services to prepare disadvantaged youth for 
academic and employment success, including summer jobs. An estimated 
577,700 participants will be served at the requested level.
    My request also includes $250 million to continue the Youth 
Opportunity Grants at the level at which it was funded in fiscal year 
1999. These competitive grants address the special problems of out-of-
school youths, especially in inner-cities and other areas where jobless 
rates can top 50 percent. The initiative takes a saturation approach to 
solving high unemployment, investing large amounts of resources in high 
poverty areas to increase educational and economic opportunity. 
Grantees will use case managers and job developers to place and 
maintain youth in private sector jobs. Education, job training, and 
work experience slots will be available for youth not ready for private 
sector placement. Related goals include reducing dropout rates, teen 
pregnancy, and crime; and increasing enrollment in post-secondary 
education.
    The budget also includes $100 million for a new Right Track 
Partnership (RTP) initiative of competitive grants designed to prevent 
economically disadvantaged and limited English proficient youth from 
dropping out of school and to encourage those who have already dropped 
out to complete their high school education. Building innovative 
partnerships between the private sector, school districts, and 
community based organizations, RTP will provide comprehensive services 
and economic opportunity to youth in high poverty areas.
    For the Job Corps, I am requesting an increase of $38 million to 
continue the operation of 118 existing centers plus an additional 3 new 
centers scheduled to be activated in 2000. Increases are requested for 
post-program termination and follow-up services, teacher/staff salary 
increases, and operating costs of new centers. In addition, funding is 
requested to complete the last of four new centers for which 
construction was initiated with 1998 resources.
    The budget includes $110 million (equally divided between DOL and 
Education) to complete the final year of Federal funding for the 
School-to-Work Initiative. Since 1995, this initiative has made over 
$1.7 billion available to States and local communities to build 
comprehensive systems that link Federal, State, and local activities to 
help young people move from high school to careers or post secondary 
training and education.
    Ensuring a prepared workforce also requires us to continue the work 
of welfare reform and that is the reason I have included a request for 
$1 billion to continue the Welfare-To-Work jobs initiative. With the 
current healthy economy, characterized by low unemployment rates and 
labor shortages in some areas, the Nation has unprecedented opportunity 
to move a substantial portion of hard-to-serve welfare recipients into 
unsubsidized employment with career potential. This is good news. But 
the hardest work lies ahead, because those still on the rolls face the 
biggest challenges to employment. So, we propose a one-year, $1 billion 
reauthorization of Welfare-to-Work that would retain the program's 
strong focus on long-term, hard-to-employ recipients. These funds not 
only help people get jobs--they will help people keep their jobs and 
move into better jobs by providing critical job retention and support 
services. In addition, we need to focus more on fathers, to ensure that 
every State helps committed fathers fulfill their basic obligations to 
their children on welfare. Many fathers want to do the right thing, but 
do not have the skills to earn enough to meet their child support 
responsibilities.
    The challenge of closing the skills gap is central to this 
country's ability to compete in the 21st Century. By closing the skills 
gap, we can help close the wage and benefits gap, as well. We must 
offer low-skilled workers the opportunities to find and sustain 
productive employment with career potential.
    For the Bureau of Labor Statistics (BLS), I am requesting $22 
million to improve statistical indicators which are essential to the 
development of economic policy and the ability of businesses, labor and 
governments to make well informed decisions. This includes resources to 
augment the Employment Cost Index (ECI) with an addition of 7,000 
establishment units to its sample. The ECI, as you know, is the 
Principal Federal Economic Indicator that provides the nation's most 
comprehensive measure of changes in employer costs for all compensation 
(including wages, salaries and employer provided benefits).
    To expand the application of quality adjustment and accelerate the 
introduction of new products for rapidly changing industries in the 
Producer Price Index (PPI), extend PPI coverage for the first time in 
the construction sector of the economy, to enhance the ongoing 
expansion of PPI coverage of the service sector, and to improve our 
productivity measures, I am requesting $5.1 million.
    These funds also include a request for resources to continue the 
multi-year Consumer Price Index (CPI) Improvement Initiative effort 
begun in 1998 to improve the timeliness and accuracy of the CPI. This 
is the third year of the expansion effort to speed the process of 
updating the expenditure weights in the CPI Market Basket and to expand 
the amount of information collected on prices and characteristics of 
certain goods and services.
    We will continue streamlining and begin a major restructuring of 
immigration activities by transferring the Alien Labor Certification 
Program from ETA to the Employment Standards Administration (ESA). This 
effort is consistent with the recommendations made by the Commission on 
Immigration Reform (CIR) as outlined in its report ``Becoming An 
American: Immigration and Immigrant Policy'' in September 1997. In 
addition to the consolidation, ESA will reengineer the program to 
better serve the customers of these programs while enhancing the 
Department's ability to effectively protect foreign and similarly 
employed U.S. workers.
    These programs will help ensure that the workforce of the 21st 
century is ready to tackle the challenges ahead. We must prepare our 
workers to seize the opportunities presented by the expanding global 
economy, while at the same time we must preserve and expand the 
economic security of working Americans and their families.
    This brings me to my second strategic goal: ensuring a secure 
workforce. We know that more Americans are working than ever, and they 
are bringing home higher earnings as well. This is real progress. 
Still--additional challenges lay ahead of us.
Closing the benefits gap
    As I pointed out earlier, research conducted by the Department of 
Labor shows that the disparity in benefits such as health insurance and 
pension coverage between low-wage workers and highly skilled workers 
continues to grow. Less than half the workforce is covered by an 
employer-sponsored pension plan. And the percentage of the workforce 
covered by private health insurance is dropping--more than one in four 
workers has no employer-provided health coverage. Bureau of Labor 
Statistics research shows that the decline is even worse for low-wage 
workers. The wage gap is increasingly becoming a benefits gap as well.
    My budget has several proposals which are designed to address this 
issue by providing workers access to information on benefits, such as 
health care and pensions, and also for employers, particularly small 
businesses, to help them meet the needs of the changing workplace. We 
can and must do better. We must protect the benefits earned by so many 
working Americans, while we also expand coverage to the many who lack 
access to these needed programs.
            Pension security and health care initiatives
    American workers deserve a secure retirement. Social Security is an 
integral part of the retirement equation, and we must do all we can to 
ensure that the benefits are there for our children and the generations 
yet to come. We should not spend the budget surplus until we save 
Social Security. The promises made to our workers and our children must 
be kept.
    But all three legs of the retirement stool must be strong, so we 
must also help all Americans save for their retirement. I have long 
supported pension and savings education programs. All of you understand 
the importance of preparing for retirement.
    The American people also understand the need to save, but many 
simply cannot afford to do so. In his State of the Union address, the 
President proposed an historic initiative--using 12 percent of the 
budget surplus to establish Universal Savings Accounts to give all 
Americans the opportunity to save. These USA Accounts will give every 
American a share in the wealth of this Nation, and help all to enjoy a 
more secure retirement. I am committed to making USA Accounts a reality 
this year, and I look forward to working with the Congress on this 
essential program.
    We must also strengthen and promote the security of the private 
pension and health systems. My budget includes $11.8 million over last 
year for enhanced pension security and health care initiatives. The 
Pension and Welfare Benefits Administration (PWBA) will provide 
education and outreach to American workers and their families to make 
informed decisions about how to best protect themselves from being 
financially overburdened by the cost of day to day medical expenses or 
a catastrophic illness. PWBA has stepped up its efforts in regulation, 
enforcement and disclosure especially with respect to the Health 
Insurance Portability and Accountability Act of 1996 (HIPAA). PWBA's 
role is also expected to increase with enactment of legislation 
currently under consideration by Congress such as the Patients' Bill of 
Rights and genetic nondiscrimination legislation.
    My request includes an increase of $5.0 million for the final 
installment of a multi-year effort to improve reporting and processing 
of Form 5500--Annual Reports on employee benefit plans in the new ERISA 
Filing Acceptance System (EFAST). Funding is also included to improve 
the Internet site, which would disclose images of the most recent Form 
5500 annual reports for approximately 800,000 health and pension plans. 
The new system which will begin operation in July, 2000, will improve 
the quality and accuracy of data, and will speed their use in 
safeguarding pensions. These reports provide financial information and 
answers to questions designed to highlight possible problem situations 
regarding the safeguarding of plan assets.
    I am also requesting $2.6 million for PWBA's Reporting Compliance 
Enforcement activities and Customer Services initiatives.
    To develop new ERISA data sources on covered employee benefit plans 
and to conduct research and policy analysis required to address 
emerging policy, legislative and operational issues, my budget includes 
$1.4 million.
    Related to our pension protection initiatives, I am also requesting 
$1.5 million for the Office of Inspector General. These funds will be 
used to target the industry of service providers and seek to prosecute 
individuals who pillage pension plans causing financial hardship for 
workers or retirees.
    I have made pension security a top priority--especially for women. 
Last fall, the President released a report demonstrating that women 
rely especially heavily on Social Security and lag in private pensions. 
In response, we are proposing two initiatives to help women in their 
retirement. First, we will require that pension plans that currently 
must offer joint and survivor annuities must now offer options ensuring 
that a spouse--usually the wife--does not experience a steep decline in 
pension benefits after the death of the husband. This will not increase 
costs to the plan. Instead, the couple can choose to receive a slightly 
lower benefit during their lives, in exchange for increased income for 
the survivor.
    Second, we should require pension plans to count any time used 
under the Family and Medical Leave Act toward pension vesting and 
participation requirements. This will help ensure that working family 
members--again, mostly women--need not sacrifice their pension in order 
to take time off to care for a new baby or seriously ill relative.
    These modest proposals will help ensure that millions of older 
Americans, especially women, can live in dignity.
    Mr. Chairman, as you, and many others on the Committee know so 
well, too many Americans have no access to a private pension. That is 
why we are proposing measures to increase coverage and portability. We 
want to improve the rules so that more employees can take their pension 
benefits with them when they change jobs. We should make it easier for 
small businesses to establish pension plans, especially plans that give 
workers predictable, guaranteed pensions. Finally, we want to enhance 
the private pension rules to help keep employees' pensions safe. These 
and other measures can widen access to the private pension system and 
make it more secure. That is a goal we can all support, and I will do 
all I can to see that these proposals are enacted in this Congress.
    One of my top priorities involves ensuring access to health care 
for millions of Americans with disabilities. Last year, we established 
the Presidential Task Force on Employment of Adults with Disabilities, 
which I chair. Our Task Force has already made tremendous progress in 
bringing together government agencies and identifying real solutions to 
help people with disabilities find real jobs. But we must do more. Mr. 
Chairman, the President and I strongly support the notion that millions 
of Americans with disabilities can and want to work, yet cannot afford 
to give up their health care to do so. We should break down the 
barriers keeping these Americans out of the workforce. No one should be 
forced to choose between keeping his or her health care and taking a 
job.
    Like many on this Committee and across the Nation, I am also 
concerned about the quality of health care. American workers and their 
families deserve the world's best health care. The managed care system 
has dramatically altered the delivery of health care in America, 
coupling lower expense with an emphasis on promoting health instead of 
merely treating illness. We all believe in cutting costs, but not at 
the expense of quality. Within the Department, we are developing 
regulations ensuring fair treatment for people when employer health 
plans deny or delay promised benefits. But many important patient 
protections can only be achieved by improving Federal law. That is why 
the President and I are committed to a strong and enforceable Patients' 
Bill of Rights. I look forward to working on this vital issue with this 
Congress.
            Other security initiatives
    To make sure we leave no one behind, the President's budget 
includes an initiative to strengthen the Unemployment Insurance (UI) 
safety net to make the program more accessible to unemployed workers, 
assure the availability of benefits in the event of an economic 
downturn and improve State administrative operations. In addition, we 
want to have further discussions with stakeholders and the Congress to 
develop broader bipartisan reforms to the unemployment compensation 
system, consistent with budgetary constraints. Our goals are to expand 
coverage and eligibility for benefits, streamline employer tax filing 
and reduce tax burden where possible, emphasize reemployment, guard 
against abuse, and improve administration.
    For the Unemployment Trust Fund (UTF), I am requesting increases of 
$71 million to invest in integrity activities such as benefit payment 
control, screening for eligibility for benefits, and field tax audits. 
These functions are vital for benefit payment accuracy, detection of 
overpayments (fraud and non-fraud), and collection of non-paid and 
under paid State taxes. Failure to provide an evenhanded, accurate and 
fair UI program results in losses in State tax funds, increased fraud, 
and error.
    The Wage Record Initiative, for which I am requesting $40 million, 
will fund State Employment Security Agencies for the one time cost to 
increase computer capacity to accurately report needed information for 
each worker for the National Directory of New Hires. This initiative 
will permit the Social Security Administration to verify names and 
social security numbers and thus improve the usefulness of the data for 
Social Security and child support enforcement purposes.
    To assist ETA in the efforts to preserve the integrity of the 
Unemployment Insurance Trust Funds, I am also requesting $1.2 million 
for the Office of Inspector General. These resources will support high 
impact criminal investigations to target and investigate schemes that 
might otherwise defraud the UI program.
    And, we are proposing consolidation and reform of Trade Adjustment 
Assistance (TAA) and the NAFTA-Transitional Adjustment Assistance 
(NAFTA/TAA) programs and extension through September 30, 2001. The 
reforms will extend TAA eligibility to those who lose their jobs 
because of shifts in production abroad--similar to the current 
provision for workers who lose their jobs because of shifts in 
production to Canada or Mexico. The reforms will also increase the cap 
on training expenditures, harmonize the existing requirements linking 
training and income support, and provide supportive services as needed.
Closing the gap in working conditions
    My final strategic goal is fostering quality workplaces that are 
safe, healthy and fair to help close the gap in working conditions. All 
American workers deserve safe worksites, healthy working conditions and 
fair pay. The benefits of these workplace enhancements flow to 
employers, too. Quality workplaces reduce turnover, which increases 
productivity. Employers see the results on the bottom line. So ensuring 
high-quality workplaces isn't just the right thing to do, it's in an 
employer's own best self-interest as well. I am also committed to 
improving working conditions abroad by aggressively working to 
eliminate abusive child labor and by promoting international core labor 
standards.
    Low-wage workers often work in demanding jobs that are accompanied 
by difficult and sometimes dangerous working conditions. The risk of 
lost-time injury in low-paying jobs is higher than in jobs held by 
highly skilled wage earners with good fringe benefits. To help close 
this gap, I am focusing the Department of Labor's emphasis on 
enforcement and compliance assistance to ensure conformity with our 
regulatory programs.
            International labor standards/child labor
    We have also targeted abusive and exploitative child labor, both at 
home and abroad, through a comprehensive strategy of enforcement, 
education and partnership. But we can do more. I believe that in the 
new global economy, we have an opportunity to lift millions of people 
into a worldwide middle class and a decent standard of living without 
exploiting children. My fiscal year 2000 budget proposals attempt to 
harmonize the Administration's goals of increasing trade and improving 
working conditions. Promoting international core labor standards and 
improving worldwide enforcement of labor laws is vital to this effort. 
Achieving expanded opportunity and security for American workers has 
become increasingly dependent upon how effectively the U.S. addresses 
the international challenges of economic globalization.
            Child labor
    My budget request continues to provide $30 million for grants to 
enable the International Labor Organization to expand its work to 
eliminate abusive child labor in more countries and industries. This 
five year initiative, which began in 1999, will help ensure that goods 
produced abroad are not made with exploitative child labor. Senator 
Harkin, I want to thank you for your active leadership over the past 
six years in this important work.
            International labor standards
    I am asking for an additional $35 million in fiscal year 2000 to 
promote core labor standards throughout the world. This includes $25 
million for a major new ILO-based multilateral program designed to help 
developing countries implement core labor standards and build their own 
social safety nets.
    I am requesting an additional $10 million for DOL to provide 
technical assistance on these same issues in support of important U.S. 
bilateral relationships. Examples of the sorts of projects we are 
planning include training in occupational safety and health, local 
economic development, dislocated worker services and social insurance 
reform.
    On the domestic front, ESA's Wage and Hour Division (Wage and Hour) 
will continue to pursue and expand our strategy of enforcement, 
education and partnerships by requesting an additional $4.25 million 
for this effort. We have a special focus on child labor compliance in 
agriculture, through our ``Operation Salad Bowl'' initiative, and the 
garment industry, through our ``No Sweat'' initiative. Wage and Hour is 
expanding its use of the ``hot goods'' remedy to deter those using 
illegal and abusive child labor--and their customers--from violating 
the law.
    Last summer marked our third annual ``Work Safe This Summer'' 
educational campaign to give child labor compliance information 
directly to young workers, parents, educators and employers. We also 
renewed our ``Fair Harvest/Safe Harvest'' campaign, which educates farm 
workers and their children about workplace rights, child labor and 
safety/health hazards in agricultural employment. And, in December 
1998, we added a child labor component to our ``E-Laws'' Internet 
Advisor. Now, young workers, parents, teachers and employers can log 
onto the Internet for comprehensive, easy-to-understand information 
about child labor protections.
    Finally, we have established partnerships with commercial consumers 
of agricultural goods. H.J. Heinz, ``Newman's Own'' and others are 
working with us to help prevent abusive child labor. And we work 
directly with employers to help them comply with the law.
            Safe and healthful working environments
    We have made real progress in this area. The rate of occupational 
injuries and illnesses is at an all-time low. Thirty years ago Congress 
passed two landmark pieces of legislation that together help ensure a 
safe and healthful workplace to all working Americans. Since then, the 
Mine Safety and Health Administration, working in partnership with the 
mining community, has made dramatic improvements in miners' safety and 
health. Last year, the number of mining-related deaths was the lowest 
in history. This is real progress. But one death, one disability, one 
case of black lung is one too many. There is still more to do.
            Safety and health
    The Occupational Safety and Health Administration has achieved 
comparable results, helping to save millions of American workers from 
illness and injuries on the job in industries ranging from construction 
to manufacturing to service and retail firms. In the coming year, OSHA 
will continue its effort to enhance partnerships with employers. We 
know that most employers want to do the right thing, but many need help 
to do so. I am committed to enhancing our partnership efforts through 
compliance assistance, consultation programs, and other cooperative 
mechanisms. However, we must retain a strong enforcement capacity as 
well, to protect workers against those employers who simply refuse to 
comply with the law. And, we will continue our work on a standard to 
help employers prevent the onset of debilitating work-related 
musculoskeletal disorders.
    A high priority this year is the development and issuance of a 
proposed ergonomics program standard. There were 647,000 lost-workday 
musculoskeletal disorders reported in 1996, which accounted for 
approximately one-third of all injuries and illnesses that year that 
resulted in one or more days away from work. Work-related 
musculoskeletal disorders account for $1 of every $3 spent for workers' 
compensation and cost $15-20 billion in workers' compensation costs 
each year. An enormous body of scientific evidence demonstrates a clear 
relationship between work and the onset of musculoskeletal disorders. 
In addition, many companies are successfully implementing ergonomic 
programs, protecting their workers, and achieving significant savings. 
OSHA has spent the last several years talking to hundreds of business 
people who have responded to problems by implementing successful 
ergonomic programs in their workplaces. Clearly, as so many employers, 
workers and scientists have already learned, ergonomics programs work. 
The draft ergonomics proposal OSHA released last month incorporates the 
basic features of ergonomics programs already used by many businesses 
to reduce their musculoskeletal injuries/illnesses.
    I am requesting an increase of $35.1 million for workplace safety 
and health programs covering both compliance assistance and targeted 
enforcement. Included in my request is $10.5 million to enhance OSHA's 
compliance assistance activities by providing staff in every Federal 
OSHA office that will be responsible for direct outreach and training 
assistance to employers, and by providing for an increase in the number 
of training grants and expert advisors.
    For targeted enforcement activities, my budget includes increases 
of $4 million to focus front-line efforts on the most dangerous 
workplaces and hazards. Over the past several years, OSHA has 
undertaken measures to leverage its resources and utilize information 
to target firms with the highest workplace injury rates. With 
information generated from the data initiative, OSHA has been able to 
identify those employers with the worst safety and health programs and 
direct resources to those work sites.
    I am requesting an increase of $13 million for Mine Safety and 
Health programs. This includes $2 million to conduct more frequent dust 
sampling, target operator abatement activities, enhance MSHA's ability 
to maintain and calibrate sampling and laboratory equipment, and to 
process the additional dust samples collected. This proposal builds on 
fiscal year 1998 and fiscal year 1999 efforts--it is the third year in 
our program to eliminate black lung disease. Resources are also 
included to reduce fatalities among metal and nonmetal miners. There 
are more than 11,000 metal and nonmetal mines throughout the country, 
ranging from very small sand and gravel operations to large, open pit 
copper mines. As a result of the Transportation Equity Act for the 21st 
Century and the continued growth of our nation's economy, we have 
already seen increased activity in the aggregates industries. The need 
for more education and training has never been greater.
    More than 20 years ago, when the Mine Act was passed and signed 
into law, the Congress and Administration wisely decided that education 
and training were critical elements of an effective safety and health 
program. As a result, we are now actively engaged in a results-oriented 
dialogue to come up with final training rules for the men and women who 
work in some 10,000 surface nonmetal mines. We are on course to 
promulgate these rules that are so critical to our continued success in 
protecting miners' safety and health.
            Family and medical leave (FMLA)
    The Family and Medical Leave Act allows workers to take up to 12 
weeks of job-protected, unpaid leave to care for a newborn or adopted 
child, attend to their own serious health needs, or care for a 
seriously ill parent, child or spouse. The President is proposing to 
expand FMLA to businesses with 25 or more employees, and to allow FMLA 
eligible workers to take up to 24 hours of additional leave each year 
to meet family obligations. The budget includes $10 million for the 
Department to research the impact this law has had on the American 
family and how to make leave accessible and affordable for more of 
America's working families.
            Equal pay/civil rights
    We must also step up our efforts to end wage discrimination and 
expand employment opportunities for all working men and women. Today 
working women earn only about 75 cents on the dollar compared to men. 
Only part of this gap can be explained by differences in workers' 
education, experience, and occupational characteristics, and the rest 
appears to reflect persistent discrimination in pay. That is why the 
President's budget will invest $4 million for ESA's Office of Federal 
Contract Compliance Programs (OFCCP) under the President's Equal Pay 
Initiative to increase outreach, education, and technical assistance to 
Federal contractors. OFCCP will assist contractors by providing 
additional tools to assess current pay policies and practices and make 
any necessary improvements. OFCCP will partner with the Women's Bureau 
on a public education program on pay discrimination.
    Let's be clear. This isn't simply a women's issue, it's a family 
issue. Today, nearly 3 out of 4 women with children work. And in 10 
million families, women are the primary breadwinners. But it's hard to 
get by on three-quarters of a loaf of bread. I would like to thank 
Senator Harkin for his very important work in the area of ending wage 
discrimination. The President and I are committed to improving the 
enforcement of wage discrimination laws and providing research, 
education, training and outreach on this important issue.
One stop services to workers and employers: Crosscutting initiatives
    The Department's fiscal year 2000 budget submission is the product 
of a new and rigorous process, driven by an unusually high level of 
interagency cooperation throughout the Department. Given the 
complexities of the challenges now facing America's working families, I 
directed agencies to work together to develop, wherever possible, 
``crosscutting'' initiatives that would bring all the necessary tools 
to bear on a problem. As a result, the fiscal year 2000 budget includes 
proposals to pilot test several exciting and innovative approaches--
more effective alternatives to the ways in which we have traditionally 
developed and implemented our programs. By unifying our efforts into 
proposals that transcend the traditional individual agency approach, I 
anticipate that we will make significant strides forward in our 
capacity to help serve the American worker better.
    The Department's innovative one-stop system for employment and 
training, launched as an experimental program in the first years of 
this Administration, has now become a national system that provides 
one-stop assistance on all employment and training related needs.
            Crosscut: Worker education and outreach
    For example, I am requesting $6 million to add information services 
on a full range of DOL programs and regulatory requirements to the 
existing information and outreach currently available to American 
workers and employers. DOL will partner with State employment offices 
to pilot test a network of 50 one-stop walk-in centers for information 
on the full range of DOL assistance programs and workplace regulations. 
The Department would offer information for workers on employment and 
training programs, job search and training opportunities. Employers and 
individuals seeking employment will have available in one location, 
information about compliance assistance, pensions, health care, safety 
and health standards, minimum wage requirements, and child labor rules. 
No one should leave these centers confused about their rights or 
obligations.
            Crosscut: Coordinated compliance assistance for business
    I am requesting an increase of $2.6 million for a Coordinated 
Compliance Assistance for Business program. To meet the needs of the 
changing workplace, where more small and medium-sized businesses lack 
the resources of many larger businesses, the Office of Small Business 
Programs (OSBP) would develop, implement, manage and evaluate the 
Department's new Coordinated Compliance Assistance pilot project for 
small businesses. OSBP would staff help desks at ten sites in three 
regions, and would serve as point of contact for DOL information. 
Specifically, the pilot program would partner with Federal agencies, 
and other organizations such as Small Business Development Centers, 
Agricultural Extension Offices, and Manufacturing Extension Partnership 
Centers to increase the availability of DOL information through on-site 
services in their existing education and assistance facilities. For 
example, OSHA would expand the development of education and training 
materials, and PWBA would make available products designed to inform 
businesses that offer pensions or health care benefits of the legal 
requirements of these benefits.
    My request includes an increase of $1.875 million for a cross 
cutting initiative we refer to as Technology for Excellent Customer 
Service (TECS). The Wage and Hour Division would pilot test a 
Department-wide integrated information technology system to provide 
workers, employers, including small business, with prompt 
identification and referral to their specific requests and areas of 
need. We would be able to centrally handle and route a large volume of 
phone calls seeking information to the appropriate DOL agency.
            Crosscut: Innovative enforcement
    My request includes $1.7 million for Alternative Dispute Resolution 
(ADR). While a strong enforcement program is essential to ensure 
compliance with our workplace laws, the Department cannot rely entirely 
on traditional means to comprehensively enforce the labor laws for 
which it is responsible. Innovative methods are being developed for 
working with employers to make maximum use of resources. In some cases, 
alternative methods of dispute resolution can resolve cases and avoid 
expensive litigation costs, for example, ADR can resolve problems with 
employers by clearing up inadvertent fiduciary violations in their 
health and benefit plans. The Department is currently participating in 
efforts at the Department of Justice to develop prototype ADR programs.
    Finally, we will work more closely with the Department of Justice 
to enhance criminal enforcement by targeting resources on the most 
serious violators of the labor laws that we administer.
            Crosscut: Strategic management
    In addition to these program proposals that cut across agency 
lines, I am also requesting funds for three management crosscuts that 
are vital to the successful design, development and operation of all 
departmental programs. In fiscal year 2000, I am asking for a total of 
$41 million to enhance the Department's efforts in the areas of 
information technology, financial management, and performance 
measurement. These management cross cuts allow the Department to tackle 
common problems across agencies in a cohesive and consistent manner.
    In the information technology arena, I am requesting several 
program increases totaling $30.7 million to ensure that the Department 
meets the legislative mandates of the Clinger-Cohen Act, Paperwork 
Reduction Act, Computer Security Act, Year 2000 challenge and the 
Administration's policy on the management of information resources and 
technology within the Department. These resources will allow the 
Department to meet the increasing demands for Web Services across 
program agencies, provide greater electronic access to DOL information 
and materials, and continue implementation of the Department's common 
IT and Web architecture.
    On the increasingly important Y2K issue--we expect all DOL systems 
to be Year 2000 compliant by the Government-wide deadline of March 31, 
1999. The Department has a total of 61 systems considered critical to 
our mission to serve American workers. As of February 12, 1999, 52 of 
these systems had been renovated or replaced to correct Year 2000 
problems.
    After the completion of system repairs or replacement, we are 
requiring each mission critical system to undergo a rigorous assessment 
of Year 2000 readiness performed by independent reviewers, to provide 
further assurance that the Department's systems will effectively 
transition into the next century. This assessment program, referred to 
as Independent Verification and Validation (IV&V), is scheduled to be 
completed by June 30, 1999.
    Notwithstanding our efforts, we recognize the potential that 
unanticipated problems or circumstances beyond our control could cause 
system or operational failures in the Year 2000. We are developing 
Business Continuity and Contingency Plans to ensure the continuation of 
all mission critical services and operations and will test these plans 
during 1999.
    The Department has also provided guidance and technical assistance 
to our program partners, such as State and local government agencies 
and private sector organizations, in preparing for the Year 2000 and 
ensuring the uninterrupted delivery of benefits and services to 
America's workers. To effectively implement the Government Performance 
and Results Act enhancements (GPRA), I am requesting a total of $7.5 
million to undertake initiatives on behalf of several agencies to 
enable them to increase their capacity to become results-oriented 
performance based organizations. I am requesting resources for several 
agencies in the areas of performance measurement development; expanding 
data capacity to establish baselines and collect data for the 
measurement of outcomes; establish procedures for assuring the validity 
and reliability of data systems to support performance measurement 
effort and the requirement to conduct program evaluation to 
periodically assess the effectiveness of programs and strategies to 
achieve the statutory purpose of the Department's programs and 
activities.
    In addition, my budget includes several increases totaling $2.8 
million to support Financial Management activities with several 
agencies. These increases will enable the Office of Inspector General 
to meet increased financial management audit responsibilities, and will 
help ETA to closeout JTPA grants timely and accurately.
    I am sure you will agree that initiatives related to GPRA 
implementation, improvements in financial management and information 
technology investments are an integral part of any serious efforts to 
manage for results.
                               conclusion
    I am delighted to have had this opportunity to discuss my fiscal 
year 2000 budget request with this distinguished panel. The ideas, 
policies and programs embodied within this request, I believe, will 
benefit our country by looking after our most precious natural 
resource--the lives of our workers and their families.
    I look forward to working with the committee and I thank you for 
the opportunity to appear before you. I will be happy to respond to any 
questions.

                       status of welfare-to-work

    Senator Specter. Thank you very much, Madam Secretary.
    The $1 billion in the Welfare to Work Jobs Program is 
included in the budget this year. I would like your evaluation 
as to how well welfare reform is working. We have from time to 
time sharp concerns expressed by people like Philadelphia's 
Mayor, Ed Randall, about the adequacy of job opportunities for 
people. It is one thing if a person turns down a job. It is 
another if a person cannot find a job.
    As we have structured the welfare reform and have given 
some latitude to the States as to how it is implemented, what 
is your assessment? Are we going to have people falling through 
the cracks, who will be taken off of welfare under the 
limitations of the reform where jobs are realistically 
unavailable?
    Secretary Herman. I think, in the main, Senator, the 
overall efforts to reform welfare, as we know it, have worked. 
I believe that we are partnering effectively with State 
governments, with local workforce delivery systems, to meet the 
demand of both the training and the placement of welfare 
recipients who are making that transition.
    This being said, I also recognize that we have key areas 
still in our country where there is clearly still a more 
disproportionate share, if you will, of those who remain on the 
welfare rolls who still have particular challenges. Those 
individuals clearly have multiple barriers, often, to 
employment. We need to have a more targeted approach, if you 
will, to work more closely with those communities.
    Specifically, as you reference what is taking place in the 
State of Pennsylvania and in particular Mayor Randell of 
Philadelphia, there I recognize that we have had a more narrow 
definition, if you will, of the term ``work activity,'' where 
we perhaps would have wanted to have more flexibility for being 
able to move welfare recipients into a broader array of job 
training opportunities and jobs themselves.
    This is why I believe that the reauthorization of the 
Welfare to Work dollars is very, very important, because the 
TANF funds essentially are legislatively bound to the time 
limits. The Welfare to Work dollars are not.
    We need to be able to target those dollars more 
aggressively, quite frankly, to where the need really is and to 
make sure that we are going to make greater investments in 
looking for training opportunities that lead to jobs and closer 
linkages with employers. In my own experience from being in the 
field, we need greater coordination now between those agencies 
that are providing those services in the local community.
    I would just conclude by saying that, overall, it is 
working. It has been a work in progress. We are learning a lot. 
There are pockets where we have higher numbers who still 
remain, where we have to have a much more targeted and 
aggressive focus to give them the support services that they 
are going to need to become employable. I would identify the 
Philadelphia community as one of those areas.

                     focusing on those most in need

    Senator Specter. Madam Secretary, you used the words ``in 
the main,'' that the program is working ``in the main.''
    To the extent that people do fall through the cracks, what 
is the answer, because I know you share my view that ``in the 
main'' is not really sufficient?
    Secretary Herman. I do share your view on that.
    Senator Specter. And, to the extent anyone falls through 
the cracks, we have to make an assessment. If they are turning 
down jobs, that is one thing. But if they cannot find a job, 
that is another. That assessment has to be made and there has 
to be assurance that people will not fall through the cracks.
    Secretary Herman. And we are making those assessments. When 
I use the term ``in the main,'' I am speaking more broadly of 
the experience factor. But this is not to say that where we 
find issues of individuals who are not perhaps getting the 
array of services that are available to them, we are not taking 
corrective action.
    Specifically, what we are doing really is three things in 
that area. The first, as I indicated earlier, is to work for 
closer coordination of all of the service providers that have 
to support individuals who are making that transition today, 
from the Department of Health and Human Services, to the 
Agriculture Department, to the Departments of HUD and Labor. We 
have to have greater coordination so that individuals do not 
fall through the cracks.
    We also are setting up a more aggressive case management 
system so that we can follow individuals and be more closely 
connected to their individual needs and what it is going to 
take.
    Third, we are doing a better job of tracking those who are 
coming up against the time limits so that we will know exactly 
through our case management process what it is they are going 
to need, from training to child care, to transportation 
assistance.
    Those are all of the more strategic steps that we have to 
take to make sure that no one, quite frankly, falls through the 
cracks and that everyone is able to benefit from the services 
that are, currently being, provided.
    It also includes, in my view, a more aggressive outreach to 
the employer community so that we can continue to work for jobs 
in the private sector and to make the link to real jobs in the 
community.
    Senator Specter. Madam Secretary, Senator Gorton attended 
the hearing but had to leave for other commitments. We are 
going to be submitting to you a series of questions from him. I 
want to make his questions a part of the record. They will be 
transmitted to you in due course.

                        universal re-employment

    The proposal for the Universal Re-employment Initiative, 
working toward having every American have access to one-stop 
career centers, is an excellent idea.
    How long do you think it will take before that program will 
be completed?
    Secretary Herman. We estimate that it will take the next 4 
to 5 years to make the investments to respond to the Universal 
Re-employment Initiative itself.
    Senator Specter. Could that timeframe be expedited?
    Secretary Herman. Well, it could be expedited if we had 
additional funding beyond what we have asked for in this 
budget. But it is also an issue of systems readiness.
    As you know, Congress passed the historic Workforce 
Investment Act that requires us to reform all of our job 
training systems by July of 2000. We are in the process of 
doing that now and I expect that all of those systems will be 
on-line and that the consolidation and the reforms that have 
been mandated will, in fact, be in place.
    It is then building on that infrastructure, as well, in the 
out-years that we would want to point to. But I would expect 
that we could reduce the timeframe with additional resources 
earlier rather than later.

                      assistance to at-risk youth

    Senator Specter. I think that would be useful if that could 
be expedited.
    I note the Youth Opportunity Grants to reduce unemployment 
among youth in high poverty areas. The $250 million current 
level is going to be maintained.
    This is certainly a very, very sensitive area which impacts 
on so many lives, not only in employment but crime, welfare 
costs, et cetera.
    I know we could be doing more. Is it realistic to have more 
resources applied there in terms of a benefits ratio for the 
cost?
    Secretary Herman. I believe that it is realistic to look at 
some additional resources. We do have a request in this budget 
that speaks to the Youth Right Track Partnership, which, in my 
view, is really a complement to the Out of School Youth 
Initiative that you funded last year.
    To me, it is the flip side of the coin of the Out of School 
Youth Initiative because there, as you know, the focus is on 
out of school youth. We have 15 million of those that we have 
so identified. Seventy percent of them are high school drop-
outs.
    The Right Track Partnership Initiative is basically 
designed as a pilot with WIA to take a preventive step, to ask 
ourselves can we prevent these kids from dropping out of school 
in the first place. And if we have a more holistic strategy 
that follows them early in their educational experience in high 
school, particularly in junior and senior years, when we now 
know from the evidence they are more prone to drop out of 
school, we can then prevent them from becoming, in fact, one of 
the out of school youth statistics that we are focused on in 
the $250 million?
    So I see it as a complementary effort that gives us a more 
holistic approach to the whole youth focus. That, coupled with 
your interest and the support that you have given us as well on 
the special initiative that we are doing for youth offenders, 
gives us, in my view, a much more aggressive approach to all of 
the issues that our young people face today, particularly those 
who are most vulnerable to dropping out, to crime in our 
communities and who, quite frankly, have very difficult issues 
attaching, or reattaching, to the labor market.

                       argus learning for living

    Senator Specter. Madam Secretary, earlier this month I was 
visited by a group concerning the Argus Learning for Living 
Program with former Oklahoma Senator Fred Harris. I had written 
to you about this subject, on a program which has provided live 
skills training, remedial education and job training in the 
South Bronx. That group seeks to expand in the Philadelphia 
area.
    Are you in a position at the moment to give me your 
evaluation on how this program has worked in the South Bronx 
and whether you think it would be a good idea to expand it, 
say, in South Philadelphia?
    Secretary Herman. I did have the opportunity upon receipt 
of your letter, Senator, to look into the program. I think the 
kinds of services that they are providing, the population that 
they are targeting, very much fits with what we are trying to 
do more broadly now under the Out of School Youth Initiative. 
We plan to be in touch with Senator Harris and the organization 
to inform them of the competitive grants that will be announced 
in April. We would encourage them to participate in a proposal 
submission to the Department as a part of that activity.
    Senator Specter. I misspoke. It is the South Bronx. It is 
not South Philadelphia. That is an egregious area--error. It is 
not an egregious area. That was not a Freudian slip--unless it 
may be the South Bronx. Certainly South Philadelphia is not an 
egregious area. [Laughter.]
    But I do not limit their interest just to South 
Philadelphia but to Philadelphia generally.

                               ergonomics

    Madam Secretary, of course, you know South Philadelphia, at 
least to some extent because you visited a training project 
there. You very graciously did so.
    Let me ask you about the ergonomics issue. This has been a 
highly, highly contentious matter with the regulations being 
delayed. There have been draft regulations promulgated by the 
Department.
    How important is it, in your judgment, to move ahead on the 
ergonomics Department of Labor program?
    Secretary Herman. I think it is very important, Senator. 
When you look overall at the injury and illness rates in terms 
of what is now reported, we know that this is the area that has 
the highest incidence--approximately 34 percent each year--all 
lost-time injuries and illnesses.
    I think that we have had a preponderance of evidence that 
suggests to us not only is there a scientific basis to proceed, 
based on the NIOSH study and the National Academy of Sciences 
study, which conclude that there is a link here, to the 
practical experiences of employers who have actually 
implemented these kinds of programs in their workplaces. They 
tell us not only does it reduce compensation costs just from 
bottom-line benefits, but that it has also led to increased 
productivity in their workplaces.
    The other factor that we have learned from experience, from 
talking to employers who are following through on implementing 
ergoinitiatives in their workplaces, is that musculoskeletal 
disorders are preventable. It seems to me, after 20 years of 
debating this subject as to whether or not we should do it, it 
is high time we get on with how we do it, learning from best 
practices, learning from employers who tell us that this has 
been good for their workplace, for their workers, and for their 
bottom line.
    Senator Specter. Madam Secretary, we have a number of 
questions which we are going to submit to you for the record. 
The issue of homeless veterans is one of enormous importance. 
Your budget includes $5 million for the Homeless Veterans 
Reintegration Program. It is an increase over the $3 million, 
but far short of the $10 million authorized.
    The National Coalition for Homeless Veterans has estimated 
that 271,000-plus veterans are homeless on any given night.
    Would you take a look at this program and see what might be 
done further to cover more veterans?
    Also, there is a serious issue with respect to women 
trapped in poverty. A recent study by the Educational Testing 
Service found that women leaving welfare for work face many 
obstacles to obtaining highly paid jobs.
    I would like for you to take a look at that and provide a 
response as to what might be done. Give your staff some 
opportunity to study that.
    [The information follows:]
                Homeless Veterans Reintegration Project
    Thank you for your support and we at the Department have worked 
hard to help as many homeless veterans as possible under the Homeless 
Veterans Reintegration Program HVRP.
    The HVRP is a popular program with widespread support in the 
veterans' community. It is a successful and effective model that 
leverages resources available in the communities where it operates and 
thus enables finding homeless veterans jobs for less than $1,000 per 
participant and $2,000 a placement. The demonstration projects have 
effectively used linkages with both training and labor exchange 
entities for training and placement assistance and use their own 
community linkages to obtain jobs for veterans who are homeless as 
well. Cumulatively, from program year 1989 to 1994, these projects 
served 19,516 veterans and placed 9,808 veterans who were homeless, 
with a total funding of $19 million. In program year 1994, with a total 
of $5.5 million, the program served 7,432 and placed 4,017 homeless 
veterans.
    Encouragement to address this problem is found in the local 
communities. The Veterans' Employment and Training Service's VETS 
recent solicitation for grant application to operate the HVRP program 
drew 53 applications for funding of which 18 urban and four rural areas 
received funding. The $3 million provided for fiscal year 1998 is 
expected to help more than 2,100 homeless veterans into jobs.
    Funding fiscal year 2000 at the $5 million level will enable VETS 
to leverage VA and HUD program resources and increase efficiency of the 
program by enabling economies of scale for those communities with large 
numbers of veterans who are homeless. At this funding level, we 
estimate that more than 6,000 homeless veterans would be enrolled in 
programs and more than 3,500 would be placed in jobs.
                     Women Leaving Welfare for Work
    We have just received the pre-publication draft of the executive 
summary of Educational Testing Service's study. We will provide our 
response to the Committee once we have had the opportunity to examine 
this draft.

                        unemployed steel workers

    Senator Specter. The issue of the unemployed steel workers 
is one of overwhelming importance. I deferred this hearing 
because the Finance Committee had a hearing and I testified at 
9:30 this morning. There is much that needs to be done 
structurally to change our trade laws dealing with dumping. But 
we need to have a more activist response for the steelworkers 
who are losing their jobs.
    I would like for you to take a look at that, if you would, 
and perhaps, or specifically, ask the people in your department 
who cover Pennsylvania, West Virginia, Ohio, Indiana, and 
Illinois to take a look at what might be done by way of job 
training or some emergency assistance for the steelworkers. It 
will be a long time before we are able really to eliminate the 
dumping, even if we do it promptly. So we need to have some 
first aid for the steelworkers who have lost their jobs.
    We appreciate your taking a look at that and submitting a 
report to the subcommittee about what further might be done.
    [The information follows:]
              Options for Assisting Displaced Steelworkers
    The Dislocated Worker Unit and the Rapid Response Team(s) in each 
State provide the best mechanism for proactive contacts with employers 
who may be facing the prospect of worker layoffs in the steel industry. 
The dislocated worker reemployment system can do outreach and make 
early intervention contact with potential and actual dislocated workers 
through the following mechanisms:
    Rapid Response contacts are made by the State Dislocated Worker 
Units (DWUs) with the steel company employers and affected workers upon 
receipt of information that there will be a layoff at an employer 
facility. WARN notices received by the State are a primary information 
notice for triggering the Rapid Response. In addition, State DWUs can 
forge contacts with steel industry employers in their State in order to 
be apprised of any future or potential layoffs. Finally, information 
obtained through various sources, such as the media, Chambers of 
Commerce, and employer contacts, can provide information that can 
trigger Rapid Response.
    A Worker Profiling and Reemployment Services mechanism exists in 
each State to determine which IU claimants are likely to exhaust their 
UI benefits before obtaining new employment and, therefore are in need 
of reemployment assistance.
    Petitions for Trade Adjustment Assistance (TAA), which are 
submitted to DOL, may be submitted by the employer, a union 
representing the affected workforce, or any group of three or more 
affected workers. Information regarding the procedures for submitting a 
petition are discussed at Rapid Response site visits, and are also 
include on DOL/ETA's Internet Web site. DOL is prepared to work through 
the workforce system to conduct outreach to worker groups upon 
notification of imminent layoffs to provide them with information and 
technical assistance with filing TAA petitions.
    ETA will continue to process petitions filed on behalf of 
steelworkers in a timely manner, and will issue determinations within 
60 days of receipt of petitions.
    At the national level, the Secretary could meet with the heads of 
the steel companies to ask for their cooperation in letting the 
workforce development system know as far ahead as possible of layoffs, 
whether permanent or temporary, and when temporary layoffs become 
permanent. This will help in planning for the response to these 
actions.
    Another national level action could be to get the steel companies 
to agree to use a certain percentage of their revenue for retraining 
their workforce.
    It is important that the TAA program continue to focus on worker 
readjustment through retraining and that, only in instances in which 
training is determined not feasible or appropriate including instances 
in which there is a strong indiction that workers will be recalled by 
their former employer--should waivers from training be considered.
    In instances in which it appears unlikely that workers will be 
recalled by their former employer, ETA will collaborate with States in 
which steelworkers are certified to encourage the enrollment of 
displaced steelworkers in TAA-funded retaining. Further, with respect 
to workers subject to recall, ETA will support enrollment in training 
for those displaced workers who prefer retaining to recall. ETA will 
not object, however, to the granting of waivers from training for 
workers who are subject to recall by their former employers but prefer 
recall rather than retraining.
    ETA will collaborate with States to ensure that State officials are 
knowledgeable of Short-Time Compensation (STC) programs--commonly known 
as work sharing. These programs provide partial unemployment insurance 
benefits to individuals whose work hours are reduced from full-time to 
part-time on the same job.

                   working conditions for amish youth

    Senator Specter. Let me now move to an issue which is 
Pennsylvanian. I appreciate your calling me about this issue. I 
had written to you concerning the Amish Youth to Work in 
Supervised Vocational Settings and the Amish sawmills, a bill 
which was passed by the House of Representatives. It is one 
where I am hopeful that we can work this out by having your 
experts come up with a regulatory system which will accommodate 
the interests.
    Many of the Amish young people do not go beyond age 14 in 
their education. This has overtones of First Amendment/Freedom 
of Religion issues. There are concerns about the safety in the 
sawmills.
    Of course, you and I discussed this yesterday and you 
raised the very good question is there any innovative thinking 
which can solve this issue. We talked about the possibility of 
your visiting the sawmill, as I did.
    I believe that there can be a program worked out consistent 
with safety for 14 year olds and to accommodate an interest. 
Numerically, this is not large, but you don't have to have a 
large number of people to have a problem in America which needs 
to be addressed.
    Do you have any generalized thinking on the subject? I know 
you are prepared. I don't want to put any words in your mouth 
and you can come to Pennsylvania, as you have in the past, to 
look at our issues.
    What is your overall thinking on this issue?
    Secretary Herman. Senator, obviously as I said to you 
yesterday, this is an area where I know the Department has 
spent quite a bit of time looking at what it is we could do 
administratively to meet the needs of the Amish community to 
have their young people work in the sawmills but yet, at the 
same time, not be in conflict with Federal child labor laws in 
this area.
    Because this is an area, as you know, that is still a 
hazardous occupation which prevents children from working in 
this area. We have sought to entertain proposals from the 
community to see what it is we could do to make for a safer 
work environment.
    The general conclusions from the on-site reviews that the 
staff conducted are that it is difficult to secure, if you 
will, the environment, not just in terms of equipment and 
machinery, but other issues, as well, related to the dust and 
the general environment itself.
    At the end of it all, because I do believe that we have 
made real attempts to try to find a workable solution here, 
though to no avail, I have indicated to you that I would like 
to make a visit myself, to go with you to visit the sawmills, 
to see first hand what are the issues that are being raised. In 
this way I will be in a better position to respond back to you 
and also to reverify or look anew at the issues that have been 
raised with our own team at the Department.
    Senator Specter. I appreciate your study to date and your 
willingness to come and pay a visit. There is nothing like 
seeing it first-hand.
    Well, we run a very efficient hearing, Madam Secretary, 
when I am the only Senator present--maybe not so efficient, but 
less inefficient, perhaps.
    It is a very busy day in the Senate. We are finishing up 
the Supplemental Appropriations Bill. We are about to begin 
work on the budget resolution. We have on the floor the issue 
of Kosovo. Every Senator has so many commitments and everybody 
on this committee virtually chairs another subcommittee of 
Appropriations.
    But I know there is a very deep interest in the work of 
your department, and we will pay close attention to your budget 
request.
    Thank you.
    Secretary Herman. Thank you very much, Senator.

                     Additional committee questions

    Senator Specter. 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:]
              Questions Submitted by Senator Arlen Specter
    labor's efforts to develop electronic reporting and a publicly 
accessible database under the labor-management reporting and disclosure 
                                  act
    Question. The Employment Standards Administration of the Department 
of Labor administers numerous laws including the Labor-Management 
Reporting and Disclosure Act (LMRDA). The House Appropriations 
Committee is concerned about the difficulty the public has obtaining 
full and complete information on the reports filed under this Act. 
Therefore, in its July 1997 report, the committee recommended an 
appropriation of $500,000 in Labor's fiscal year 1998 appropriations to 
begin the development and implementation of an electronic reporting and 
disclosure system that could be easily accessed by the public through 
the Internet. The Congress appropriated these funds in fiscal year 1998 
to begin the project. What is the status of the project?
    Answer. Good progress is being made on all phases of this project. 
ESA is advancing computer programming required for new reports receipt 
and processing systems and the computerized audit program. A contract 
has been initiated with the National Technical Information Service 
(NTIS), U.S. Department of Commerce, to obtain recommendations and cost 
estimates for an Internet-based electronic filing and public disclosure 
system based on requirements developed by the agency. An additional 
contract to develop and implement electronic filing and disclosure is 
planned for this fiscal year based on those recommendations. 
Additionally, a contract has been initiated to advance plans for the 
conversion of information from paper-filed reports to electronic format 
for inclusion in the Internet public disclosure database.
    With the additional $500,000 appropriated for this project in 
fiscal year 1999 and the $1 million enhancement requested this year, 
contract work on the Internet-based electronic filing, public 
disclosure, and audit systems can be undertaken ahead of the initial 
schedule. The agency plans to review and refine its planned project 
costs and timelines following careful review of contractor 
recommendations that are expected in April and will submit an updated 
plan to the Appropriations Committee.
    Question. How did Labor spend the $500,000 initially appropriated 
for the project?
    Answer. The $500,000 appropriated in fiscal year 1998 was obligated 
for contractor services. Contractor staff were employed to assist with 
technical aspects of the plan development and for development and 
planning of the new system.
    Question. The House Appropriations Committee also directed that 
Labor submit a complete plan of implementation by April 1, 1998. Labor 
submitted a general plan in May 1998 and reported that the electronic 
system would be fully operational by the end of fiscal year 2001. What 
is the basis for your 3-year estimate to implement the system?
    Answer. The project timeline in the May 1998 plan was based on 
careful consideration of a number of factors, including program 
requirements and information obtained in conferring with staff at other 
government agencies, firms with expertise in electronic forms design 
and document management technology, agency technology staff, and 
contractor staff employed for this project. The agency plans to review 
and refine its planned project costs and timelines following careful 
review of contractor recommendations that are expected in April.
    Question. Based on the progress to date, is the 3-year estimate to 
implement the system still realistic? Would more funding allow you to 
implement the system sooner?
    Answer. The agency plans to review and refine its planned project 
costs and timelines following careful review of contractor 
recommendations that are expected in April. The agency plans to submit 
an updated plan to the Appropriations Committee.
    Question. You reported in the May 1998 implementation plan, that 
you expected to initiate contracts in the third quarter of fiscal year 
1998 to develop the project. Why did you choose to use contractors to 
develop and implement the project and did you award contracts on a 
competitive basis?
    Answer. Although agency staff resources are being used to work on 
program aspects of the electronic filing and disclosure system, 
contractors are needed to provide the necessary technological expertise 
for project development and implementation. Labor hours for system 
design work were initially secured under a contract authorized under 
Section 8(a) of the Small Business Act, not subject to full and open 
competition since the award price of the contract did not exceed 
$3,000,000. Starting on September 15, 1998, the labor hours for system 
design and programming work was obtained through Digital Equipment 
Corporation's GSA schedule. The agency contracted with the National 
Technical Information Service, U.S. Department of Commerce, for 
recommendations regarding the Web-based electronic filing and public 
disclosure systems. The NTIS was chosen based on its experience with 
other government agency projects. The agency has work underway with yet 
another contractor for a study regarding forms redesign to facilitate 
data conversion using OCR/ICR technology. The forms redesign study was 
not awarded competitively because it was for less than $10,000.
    Question. Now that almost a year has passed since you submitted 
your original plan, do you expect to update the plan and provide copies 
of the updated plan to the Congress?
    Answer. The agency plans to review and refine its planned project 
costs and timelines following careful review of contractor 
recommendations that are expected in April. The agency plans to submit 
an updated plan to the Appropriations Committee.
    Question. Please elaborate on how your approach for developing 
Labor's electronic system compares with practices other government 
agencies have used to develop similar electronic systems.
    Answer. Other agencies have electronic report submission systems 
such as will be established for the LMRDA report forms. The agency has 
consulted with numerous federal agencies regarding their systems. In 
general, we are following the same developmental approach and 
considering similar problems. The LMRDA reporting project, 
nevertheless, does have program-specific issues and concerns that need 
to be addressed, including the need to administer digital signatures 
for two signatories in each union and continual turnover in official 
signatories.
    Question. In the House Appropriations Committee's July 1997 report, 
the Committee directed that Labor include in its future budget requests 
funds to continue the project. In the May 1998 implementation plan, 
Labor estimated the total costs of the electronic system to be $4.2 
million. Based on your experience to date, is the $4.2 million still an 
accurate estimate for completing the project by fiscal year 2001?
    Answer. The agency plans to refine its May 1998 project costs and 
timelines following careful review of contractor recommendations that 
are expected in April. An updated plan will be provided to the 
Appropriations Committee.
    Question. In fiscal years 1998 and 1999, the Congress appropriated 
$1.5 million for the project. Your request for fiscal year 2000 is $1.0 
million. Why would $1.7 be needed in the final year of the 3-year 
project?
    Answer. The agency has not advanced a $1.7 million project cost 
estimate for fiscal year 2001. The May 1998 implementation plan did 
include a projected cost of $1.3 million in the final year of the 
project plan, primarily for development and implementation of the 
Internet-based reporting and disclosure systems. However, additional 
funds appropriated for this project in fiscal year 1999 and the $1 
millionrequested fiscal year 2000 enhancement will permit work on the 
Internet-based system ahead of the initial plan schedule. The agency 
plans to refine cost and time projections following review of 
contractor recommendations and to provide an updated project plan to 
the Appropriations Committee.
    Question. What is the status of your expenditure of funds to date?
    Answer. To date approximately $900,000 has been obligated for 
contractor services. In fiscal year 1999 the remaining available 
resources, approximately $600,000, will be obligated for additional 
contractor services, including the design of electronic reporting 
forms, and the development of the electronic filing and disclosure 
systems.
    efforts to reengineer the davis-bacon wage determination process
    Question. In its January 1999 report, GAO recommended several 
actions to reduce the cost of verification and increase the benefits. 
According to the report, you agreed to take action in response to these 
recommendations, including increasing the use of telephone 
verification, using a judgmental sample, and increasing efforts to 
obtain payroll documentation from all selected submitters. Please 
discuss the actions you are taking to implement these recommendations.
    Answer. We are working very hard to assure that the Davis-Bacon 
wage data is accurate and that our processes for obtaining and 
verifying data are effective and efficient. Our progress on 
implementing GAO's recommendations is summarized below:
    1. GAO recommendation.--Increase the use of telephone verification 
while decreasing on-site verification and increase efforts to obtain 
payroll documentation from all selected submitters. The sample of 
survey forms submitted by employers randomly selected for telephone 
verification will be increased (except where payroll data have already 
been submitted). We will continue to select a 10 percent sample of data 
collection forms from third party submitters for telephone 
verification. The telephone verification process will request 
documentation supporting the submission.
    2. GAO recommendation.--Change the procedures used to select wage 
data for on-site verification, using a judgmental (rather than a 
random) sample of wage data submissions based on the potential impact 
of the data on prevailing wage rate determinations. The selected 
contractors will be contacted by telephone and asked to provide 
supporting documentation. If the documentation is not provided, the 
contractors will at least be sampled for on-site verification.
    3. GAO recommendation.--Revise verification procedures to take more 
appropriate action when documentation cannot be readily obtained from a 
submitter, such as not using data when supporting documentation is 
requested but not provided, requiring documentation where possible, and 
giving third parties an opportunity to provide supporting documentation 
for data they submitted. Supporting documents will be requested in all 
telephone and on-site verification. If a submitter is not able or 
willing to provide documentation or access to the documentation, the 
data submitted may still be used unless the submitter has a history of 
not cooperating or has provided inaccurate data in the past. We are 
developing a system for tracking those that have previously failed to 
cooperate or provided inaccurate data. In addition, third parties will 
be given the opportunity to provide supporting documentation for all 
data they submitted.
    Question. Despite the numerous errors found in submitted wage data 
by both Labor's OIG during fiscal year 1997 and on-site auditors during 
fiscal years 1998 and 1999, the revisions you made in the wage 
determinations were ``minimal'' in your estimation--less than 10 cents 
an hour. Why did these substantial errors in the wage data make such a 
small difference in the prevailing wage rate set using the data?
    Answer. In the first place, the data errors found through our 
verification efforts in 1998 and 1999 (and previously) were not used in 
producing wage determinations; rather, these errors were corrected or 
eliminated through our verification process. Our verification 
procedures are intended and designed to correct or eliminate erroneous 
data, and prevent any attempt to systematically bias the wage/benefits 
data reported. Nonetheless, verification cannot feasibly detect and 
correct all erroneous data.
    There are a number of reasons why errors on survey data submissions 
would have little or no impact upon the resulting wage determination; 
the following examples illustrate why. First, however, it is important 
to note that neither the OIG review nor the on-site audits conducted by 
our verification contractor have found any evidence of fraud or other 
systematic efforts to bias the wage survey data. Some data submissions 
under-report and other submissions over-report what was actually paid. 
These errors tend to cancel each other, and the overall net effect is 
therefore minimal.
    Examples of situations where errors in the data submission would 
have little impact on the resulting wage determination include:
    1. A submitter reports ten electricians making $10.00 per hour. On-
site verification determined that only two electricians were paid 
$10.00 per hour, but that three electricians were paid $8.00 per hour, 
two were paid $9.00 per hour, and three were paid $12.00 per hour. 
Calculating the absolute difference (i.e., not factoring in a plus or a 
minus for over- or under-reporting), would yield a average difference 
of $1.40 between the reported rate and the verified rates; however, the 
verified weighted average would be $9.80, a difference of only $.20 per 
hour from the reported $10.00 per hour rate.
    2. A submitter reports paying carpenters $10.00 per hour in wages 
but reports no fringe benefits. On-site verification finds that the 
carpenters actually received benefits costing $1.50 per hour. The 
average fringe benefit payment for the other submitters who reported 
paying benefits was also $1.50 per hour. Under these circumstances, the 
failure to report fringe benefits would have no impact upon the 
resulting wage determination; however, the absolute difference between 
the reported and verified amount was $1.50 per hour.
    3. The survey determines that 90 percent of the elevator 
constructors in a particular area are paid the same union rate. Under 
these circumstances, the current union rate is, by definition, the 
prevailing rate. One data submission form for work preformed last year 
reported that the elevator mechanics were paid today's union rate of 
$23.15 per hour when in fact the union rate last year was only $22.15 
per hour. Thus, the absolute difference between the rate reported and 
the rate verified would be $1.00 per hour; however, the impact upon the 
wage determination would be zero because the reporting error does not 
alter the fact that the union rate prevails and the wage determination 
would be based upon the current union rate.
    Question. You notified the Congress in 1997 that you had selected 
two options to test what you believed were the options most likely to 
improve the timeliness and accuracy of Davis-Bacon wage determinations. 
We would be interested in hearing more about the specific criteria you 
used to select these two options. What are these options and why were 
these considered the most appropriate means to increase timeliness and 
accuracy?
    Answer. As we have advised the Congress, the Department considered 
a broad range of options before focusing its efforts and resources on 
two possible approaches: (1) using the Bureau of Labor Statistics' 
redesigned Occupational Employment Statistics (OES) survey as the 
primary basis for Davis-Bacon wage determinations, and (2) 
reengineering the current Davis-Bacon wage survey/determination 
process. These options were selected because they offered a significant 
opportunity to improve the timeliness and accuracy of Davis-Bacon wage 
determinations, and because they provided the opportunity for a 
complete solution. Some of the options initially considered only 
offered a partial solution. For example, utilizing State prevailing 
wage determinations would have been a viable approach only in those 
States that currently have a prevailing wage determination program of 
their own.
    The Wage and Hour Division has established a long-term performance 
goal of being able to survey every area of the country for all four 
types of construction (residential, building, heavy and highway) no 
less often than once every three years, and to issue wage 
determinations that validly represent locally prevailing wages and 
benefits within 60 days of receipt of the underlying survey data. We 
believe that the two options currently being developed offer the best 
opportunity for achieving these goals.
                  wage determination performance goals
    Question. We are aware that you have developed two performance 
goals that you will use to gauge your success in improving the 
timeliness and accuracy of the wage determination process. Please 
explain how these goals will, in fact, ensure increased timeliness, 
accuracy and participation in the process. Also, please explain the 
process and criteria Labor will use to develop these two specific goals 
and why you believe these goals would best indicate success.
    Answer. The performance goals we have established for the Davis-
Bacon wage survey/determination program under the Government 
Performance and Results Act are to:
    1. Survey each area of the country for all four types of 
construction at least every three years, and the resulting wage 
determinations validly represent locally prevailing wages/benefits; 
and,
    2. Update 90 percent of Davis-Bacon wage determinations within 60 
days of receipt of the underlying survey data.
    These performance goals focus specifically on timeliness and 
accuracy including frequency of data collection and the quality of the 
data collected. Wage determinations based on old data or erroneous data 
will not validly reflect locally-prevailing wage and fringe benefit 
rates. A timely wage determination is not acceptable unless it also 
accurately and appropriately represents locally prevailing wages and 
benefits.
    For example, the use of OES data may not yield sufficient 
information to issue accurate rates for the different types of 
construction. OES may provide data for electricians in the construction 
industry as a whole in an area, but not for electricians in building, 
residential, heavy and highway construction, respectively. Clearly, a 
wage determination based upon data for the construction industry as a 
whole would be less accurate than a wage determination reflecting 
different types of construction. However, there may be other timeliness 
and accuracy considerations such as the frequency of data collection 
and the quality of the data collected that would compensate for using 
broader occupational data.
    Participation directly correlates with accuracy but also affects 
timeliness. In both approaches we are pursuing, one of our goals is to 
increase participation without adversely affecting timeliness.
                reengineering wage determination process
    Question. Labor has been working on reengineering the wage 
determination process since 1996. What information is currently 
available that would document the progress you have made to date in 
improving the timeliness and accuracy of the wage determination 
process? Are there any results yet available from your efforts? If not, 
when would be the earliest that such results would be available and 
what would they be?
    Answer. Pursuant to Congressional direction, the General Accounting 
Office (GAO) has been monitoring and evaluating our continuing efforts 
to reengineer and reinvent the Davis-Bacon wage survey/determination 
process. GAO will soon issue its initial report entitled, ``Davis-Bacon 
Act: Labor's Actions Have Potential to Improve Accuracy and Timeliness 
of Wage Determinations.'' As indicated in the GAO's report, after 
examining a number of options, the Department concluded that the most 
promising approaches to achieving substantial improvements in the 
Davis-Bacon wage determination process are: (1) reengineering the 
current wage survey/determination system; or (2) using the Bureau of 
Labor Statistic's (BLS) redesigned Occupational Employment Statistics 
(OES) survey as the primary basis for Davis-Bacon wage determinations.
    We believe that we have made significant progress on both 
approaches. During the last year, two BLS pilot surveys to determine 
the feasibility of collecting fringe benefit data have been completed, 
two more pilots have been authorized, and we are evaluating the 
potential usefulness of such data for determining prevailing fringe 
benefits. Additional OES data should soon be available for evaluation 
of the feasibility of using this wage data for Davis-Bacon wage 
determinations.
    The Department has also implemented several reengineering 
initiatives, including a Statewide pilot survey in Oregon that uses new 
printing and mail processing applications and our new Davis-Bacon web 
site.
    The following outlines progress on our reinvention and 
reengineering initiatives:
Reinvention initiative
    During the past two years, Wage and Hour has worked closely with 
BLS to test the feasibility of utilizing BLS data sources as the 
underlying basis for future Davis-Bacon wage determinations. OES 
locality data for 1997 (\2/3\ of the full three year sample) will be 
available in the next few months, and Wage and Hour will continue to 
work with BLS to determine whether the two-thirds partial OES results 
will provide adequate data to produce locality estimates for the 
construction industry for evaluation. During fiscal year 1998, Wage and 
Hour funded an effort by BLS to test the feasibility of collecting data 
on union status by occupation as part of the OES data collection 
process. Based upon the favorable results of that test, Wage and Hour 
has contracted with BLS to begin testing actual data collection. BLS 
expects to receive union data from the States by the end of August and 
begin analysis in September.
    Because the OES survey does not provide data on fringe benefit Wage 
and Hour has worked with BLS to explore the possibility of utilizing 
National Compensation Survey (NCS) fringe benefit data to supplement 
OES. In fiscal year 1998, Wage and Hour funded (approximately $1.4 
million) two pilot surveys (Jacksonville, FL, and Tucson, AZ) to 
collect detailed fringe benefit data for specific occupations in the 
construction industry. Both surveys provided considerable data for 
construction occupations and, based upon the results of these surveys, 
Wage and Hour has contracted with BLS to conduct two more pilot surveys 
in fiscal year 1999 in Toledo and Salt Lake City. Wage and Hour is 
analyzing the completed two BLS pilot surveys to evaluate whether and 
how these data might be utilized to establish prevailing fringe benefit 
determinations under the Davis-Bacon Act. Data from the second two BLS 
pilots will be available late this year. As a result, decisions on 
whether the NCS survey can provide a viable source of fringe benefit 
data for Davis-Bacon wage determinations can not be made until fiscal 
year 2000.
Reengineering initiative
    The reengineering option builds on the current ``universe'' survey 
approach and seeks to use new technology and revised procedures to: 
promote greater survey participation; make the data collection and 
analysis process more efficient and less costly; and enhance our 
ability to verify data submissions. In addition to implementing new 
data verification procedures, recent accomplishments include:
  --A redesigned data submission form (WD-10) that is machine-readable 
        and more user-friendly. The form is in clearance and should be 
        implemented in August 1999.
  --A Davis-Bacon web site has been developed to provide information 
        about the survey process, ongoing as well as planned surveys, 
        and the (WD-10) data submission form.
  --Standard business process modeling procedures have been utilized to 
        model the survey process and identify opportunities for 
        improvement.
  --Knowledge Management tools--which can be used for survey data 
        editing and evaluation--are being evaluated, and a selection 
        will be made by the end of fiscal year 1999.
  --The concept of surveying a broad geographic area for all four types 
        of construction is being tested in Oregon (and in an upcoming 
        Colorado survey), and a number of new technologies are being 
        utilized. These include using multiple sources of survey 
        universe data in electronic format, automated mailing of 
        questionnaires and follow-up, automated data input eliminating 
        manual input of 11,000 records, and respondent return tracking 
        using bar codes. Reengineering efforts will continue over the 
        next year. Additional improvements, such as new data input 
        prototypes, additional internet information sources, and 
        electronic imaging capabilities are being developed this fiscal 
        year.
    Question. Labor has decided to use existing BLS data collection 
systems as an alternative source of data under its reengineering 
process. You have identified the pros and cons of this option for the 
Congress. What issues would still need to be resolved in order to use 
BLS to collect wage and fringe benefit data as an alternative way to 
calculate and issue prevailing wage rate determinations?
    Answer. The Department of Labor has not decided to use existing BLS 
data collection systems as an alternative source of data under its 
reengineering process. Rather, the Department is exploring and 
developing this approach, but no decision has yet been made as to how 
to proceed for the long-term.
    The BLS Occupational Employment Statistics (OES) survey that we are 
considering as the possible source of wage data will not publish 
results based upon its full sample until sometime next fiscal year. 
Also, the results from all four National Compensation Survey (NCS) 
fringe benefit pilot surveys will not be available until next fiscal 
year. Thus, we are still at least a year away from being able to fully 
evaluate the BLS data and all of the issues affecting the possible use 
of these data as the principal source for Davis-Bacon wage 
determinations.
              requirements of major rulemaking initiatives
    Question. OSHA currently has two major rulemaking initiatives--the 
proposed ergonomics standard and a worksite safety and health program 
standard--that call for selected employers to create some form of 
internal worksite health and safety programs to protect employees from 
workplace hazards. Many employer groups are opposing both of these 
initiatives. California has its own ergonomics program standard and 
many state operated OSHA states have had worksite safety and health 
program standards for many years.
    What kinds of duties would employers have in setting up worksite 
programs under each of these proposed standards and how would these 
standards differ?
    Answer. The two programs are designed to work together. The safety 
and health program that would be required by that rule would establish 
the basic framework for managing all draft proposed safety and health 
issues in the workplace that are covered by OSHA standards or the 
General Duty Clause, while the draft ergonomics program rule would 
provide the specifics for addressing that hazard. The employer's 
ergonomics program would fit into the framework established by the 
safety and health program, since both programs contain most of the same 
core elements and are consistent with each other. The safety and health 
program rule would require employers to set up safety and health 
programs that include management leadership and employee participation, 
hazard identification and assessment, hazard prevention and control, 
information and training, and program evaluation, while the draft 
ergonomics standard spells out how each of these elements would work 
for ergonomic hazards. For example, the safety and health program rule 
would require employers to investigate accidents as part of their 
hazard identification activities, while the draft ergonomics rule would 
specify how to investigate and analyze the jobs that have led to 
musculoskeletal disorders (MSDs) in the workplace. In addition to 
specifying how employers are to implement each element of a safety and 
health program to address ergonomic hazards, the draft ergonomics rule 
would also require employers to set up a medical management program, a 
program element that is essential to achieve early reporting of MSDs 
but would not be required by the safety and health program rule.
    Question. Which employers would have to set up programs under each 
of these standards separately and how many employers would have to set 
up separate worksite programs under both of these proposed regulations?
    Answer. All employers in OSHA's jurisdiction in general industry 
would be required to set up a basic safety and health program under the 
draft safety and health program rule. Under the draft ergonomics rule, 
OSHA's preliminary estimates are that about one-third of these 
employers would need to establish a basic ergonomics program. 
Approximately two million employers would be able to incorporate an 
ergonomics program into the framework established by their safety and 
health program. No employer would be required by these draft rules to 
set up two separate worksite programs.
    Question. Is it necessary to mandate separate programs through each 
of these standards to protect workers from workplace hazards?
    Answer. Instead of writing rules that mandate separate programs, 
OSHA has drafted complementary program rules. If the agency finalizes 
both rules, covered employers will have a basic safety and health 
program in place that addresses all job-related hazards in their 
workplaces that are covered by OSHA standards and the General Duty 
Clause, while those employers whose employees work in jobs that have 
already caused an MSD or that have a high probability of doing so will 
have an ergonomics program that specifically addresses ergonomic 
hazards. OSHA believes that ergonomic hazards warrant their own rule 
because MSDs represent over one-third of all employer-reported 
workplace injuries and illnesses, because no existing OSHA rule 
addresses ergonomic hazards, because the workplace factors giving rise 
to MSDs are complex and multiplicative, and because the methods used to 
eliminate or control these factors are often unique to ergonomics.
       effectiveness of ergonomics and safety and health programs
    Question. What evidence is available that suggests that ergonomics 
and general worksite safety and health programs would result in safer 
workplaces?
    Answer. Workplace safety and health programs have been shown to 
reduce job-related injuries and illnesses in a wide variety of 
contexts. For example, four states that have had safety and health 
programs in place covering all employers in the state for a period of 
five years or more have achieved average reductions in reported 
injuries or illnesses of 17 percent above the national average for the 
same period. In addition, state workers' compensation programs in four 
different states that have required or encouraged certain employers to 
set up safety and health programs have observed declines in work-
related injuries and illnesses of 10 to 20 percent per year among 
program participants, when compared with the injury and illness rate 
among non-participating employers in the state. Further, hundreds of 
thousands of employers across the United States have set up safety and 
health programs and ergonomic programs on their own and have found 
these programs to be highly effective in reducing injuries and 
illnesses, saving money, and improving employee morale and 
productivity.
    With respect to ergonomics, there is evidence, based on success 
stories, of declines in musculoskeletal disorders of up to fifty 
percent and even greater reductions in workers compensation costs when 
ergonomics programs are established. As the agency proceeds with 
promulgation of an ergonomics standard, it will analyze additional data 
to support this evidence.
    Question. What has been the state experience with both program 
standards regarding enforcement, administrative burden on employers and 
reducing workplace hazards generally?
    Answer. Many states have mandated safety and health programs for 
certain groups of employers in the state, but only a few states require 
programs for most or all employers in the state. Those states that have 
programs for most or all employers have found them effective in 
reducing injuries and illnesses. Oregon, Washington, and California all 
consider their safety and health program requirements to be the 
centerpiece of their enforcement efforts. In these states, enforcement 
efforts focus first on encouraging employers to comply fully with the 
state's safety and health program requirements. There is little 
evidence on the costs or burdens of state program requirements. 
However, there is evidence in the state of Washington that compliance 
with the program requirements has been excellent, both for small and 
large firms.
                       worker protection programs
    Question. For Labor Department enforcement programs--worker safety, 
protecting pensions, health benefits, minimum wage and overtime 
requirements--you are requesting an increase of $129 million or 12 
percent over the fiscal year 1999 level. What specific accomplishments 
do you expect to achieve with these added resources?
    Answer. The $129 million increase in Worker Protection includes 
resources for the Pension and Welfare Benefits Administration (PWBA), 
the Employment Standards Administration (ESA), the Occupational Safety 
and Health Administration (OSHA), the Mine Safety and Health 
Administration, the Office of the Solicitor (SOL), and the Bureau of 
International Labor Affairs (ILAB ). The requests for these agencies 
support two of my three goals for the Department: to ensure that all 
Americans are economically secure; and that all Americans are 
guaranteed a safe and healthful workplace with equal opportunity for 
all. The request for ILAB does not relate to domestic workplace 
enforcement, but does address certain workplace issues elsewhere.
    One of the things we hope to achieve is to close the gap in 
benefits. Research conducted by the Department of Labor shows that the 
disparity in benefits such as health insurance and pension coverage 
between low-wage workers and highly skilled workers continues to grow. 
Less than half of the workforce is covered by an employer-sponsored 
pension plan. More than one in four workers has no employer-provided 
health coverage. BLS research shows that the gap is even worse for low-
wage workers. Three-quarters of workers in small businesses are not 
covered by a pension plan. We must strengthen and promote security of 
the private pension and health systems. The wage gap is increasingly 
becoming a benefits gap as well. This budget has several proposals 
which are designed to address this by providing workers access to 
information on benefits, such as health care and pensions, and also for 
employers, particularly small businesses to help them meet the need of 
the changing workplace.
    For PWBA, our request includes a net increase of $11.8 million for 
initiatives to enhance pension security and health care, of which an 
additional $8.2 million is requested for the enforcement and compliance 
activity. This request includes a one-time program increase of $5.0 
million to offset the Department's share of the first year costs 
associated with processing Form 5500 Annual Reports for plan year 1999 
in the new ERISA Filing Acceptance System (EFAST) in year 2000. The new 
EFAST system is projected to save the federal government $50.0 million 
over five years. This includes $1.2 million to be used to implement a 
proactive voluntary compliance program to facilitate corrections by 
fiduciaries who want to come in compliance with the law, which will 
promote better compliance in the future. Also included are $2.6 million 
to expand enforcement and customer service capacities related to the 
new health benefit laws covering private employers as well as to 
enhance health-related regulatory, interpretive analysis, and 
coordination activities. Another $2.7 million in program increases will 
be used to address emerging policy and legislative issues; conduct 
outreach programs to dislocated workers concerning their pension and 
health benefits and begin a pilot program on ``one-stop'' centers for 
education and outreach.
    These initiatives are also aimed toward closing the gap in working 
conditions. The Department's intention is to foster quality workplaces 
that are safe, healthy and fair to help close this gap. All American 
workers deserve safe work sites, healthy working conditions and fair 
pay. The benefits of these workplace enhancements flow to employers 
too. Quality workplaces reduce turnover, which increases productivity. 
Employers see the results on the bottom line. So ensuring high-quality 
workplaces isn't just the right thing to do, it's in an employer's own 
best self-interest as well.
    For ESA, our request includes the transfer of the Alien Labor 
Certification program from the Employment and Training Administration 
(ETA) to ESA's Wage Hour program. This transferred program renamed the 
Foreign Labor Certification Program by ESA includes $33.7 million and 
98 FTE previously in ETA is part of the Department's plan to 
consolidate it's immigration activities as recommended by the 
President's Commission on Immigration Reform (CIR) in September 1997. 
In addition to the consolidation, the Department will launch a major 
restructuring of this program designed to streamline and create a fee-
based, customer responsive program characterized by the timely 
processing of employer applications.
    For ESA's Wage Hour program, we are requesting $4.3 million and 30 
FTE to build on the domestic segment of the President's Child Labor 
initiative begun in fiscal year 1999 by increasing compliance efforts 
in targeted industries including agriculture and garment manufacturing, 
and other low-wage industries. This initiative will allow DOL to 
enhance efforts like ``Operation Salad Bowl'' and the ``No Sweat'' 
initiatives. We are also requesting an additional $700 thousand ($1 
million is within the base) for the ``Partnership with Service 
Providers'' initiative, which will encourage voluntary compliance with 
Wage Hour laws through partnerships with organizations that provide 
services to workers and employers such as public schools and libraries, 
health care providers, and small businesses. We are also requesting 
$1.7 million to begin the Technology for Excellent Customer Service 
(TEC) initiative for a new computer-based telephone system that will 
allow the Wage Hour program to respond to approximately 5 million calls 
from the public on compliance issues.
    Our request for MSHA is an increase of $13.1 million. This includes 
a $2 million increase for federal sampling of respirable coal mine dust 
and quartz, which will improve the timeliness of corrective actions to 
reduce the incidence of occupationally-caused lung disease among coal 
miners. The request also includes a $3.7 million increase to retool the 
metal and nonmetal safety and health program for reducing fatalities, 
injury incidence rates and miners' overexposure to health hazards. The 
request includes $3.0 million to provide increased educational 
assistance to the metal/nonmetal sector. The need for more education 
and training in this mining sector has never been greater.
    Our request for OSHA includes a program increase of $25.6 million, 
with $10.5 million for Compliance Assistance Enhancement, committed to 
support the development and implementation of a comprehensive 
compliance assistance program. The program will bolster the agency's 
capacity to provide direct training and assistance to employers and 
workers to reduce injuries and illnesses on the job. For maintenance, 
replacement and investment costs associated with the agency's 
information technology infrastructure, the budget request includes $8.1 
million. Another $4.0 million will be used to bolster resources for 
targeted enforcement for those work sites that have been identified as 
the most dangerous, establishments with injury and illness rates that 
are above industry average.
    We must also want to step up our efforts to end wage discrimination 
and expand employment opportunities for all men and women. Today, 
working women earn only 75 cents to the dollar compared to men. Only 
part of this gap can be explained by differences in workers' education, 
experience, and occupational characteristics, and the rest appears to 
reflect persistent discrimination in pay. As part of the President's 
Equal Pay Initiative, our request for ESA's Office of Federal Contract 
Compliance Office (OFCCP) includes $4 million to increase outreach, 
education, and technical assistance to Federal contractors. OFCCP will 
assist contractors by providing additional tools to assess current pay 
policies and practices and make any necessary improvements.
    We have also targeted abusive and exploitative child labor, both 
home and abroad, through a comprehensive strategy of enforcement, 
education and partnership. But we can do more. In the new global 
economy, we have an opportunity to lift millions of people into a 
worldwide middle class and a decent standard of living without 
exploiting children. Promoting international core labor standards and 
improving worldwide enforcement of laws is vital to this effort. 
Achieving expanded opportunity and security for American workers has 
become increasingly dependent upon how effectively the U. S. addresses 
the international challenges of economic globalization. To support 
these efforts, we are requesting $35 million to promote core labor 
standards throughout the world, with $25 million for a major new ILO-
based multilateral program designed to help developing countries 
implement core labor standards building their own safety nets, and $10 
million for technical assistance on these issues in support of U.S. 
bilateral relationships including training in occupational safety and 
health, local economic development, dislocated worker services and 
social insurance reform.
    These requests for worker protection will benefit our country by 
looking after the most precious of our natural resources--the lives of 
our workers and their families. The requests are essential to the well-
being of working men and women in the United States and abroad, and so 
every worker stands to benefit from these proposals.
                               job corps
    Question. The General Accounting Office (GAO) reported last 
November that the Labor Department was overstating the success of the 
Job Corps program. Specifically, GAO found that only 14 percent of Job 
Corps enrollees satisfied all their vocational training requirements, 
even though the Labor Department reported that 48 percent of all 
enrollees complete their vocational training. GAO also questioned the 
Labor Department's statistic that 62 percent of the jobs obtained by 
program participants were related to the training they received; 4 out 
of 10 of the claimed placements did not relate to the enrollee's 
vocational training. What is your response to GAO's serious questions 
regarding the achievement of Job Corps?
    Answer. We have closely reviewed GAO's report and their 
interpretation of Job Corps data and definitions, and have undertaken a 
series of actions in response. In addition, we had several initiatives 
under way at the time the GAO report was issued that address issues 
previously raised by GAO.
    Regarding the number of enrollees completing their training 
requirements, the GAO report questioned Job Corps' use of the term 
``completer''. In concert with employers, Job Corps had developed 
competency-based instruction in a number of vocational offerings where 
an overall Training Achievement Record (TAR) includes several levels of 
completion or ``step-off levels''. Under this system, TARS identify all 
the skills necessary to master a certain profession and then separate 
those skills into skill sets that reflect a graduation between 
beginning level proficiency and mastery of the relevant vocation. Job 
Corps establishes a variety of completion levels within each vocation 
with a goal of establishing a preliminary completion level that will 
make the student employable at an entry level in the vocation and at a 
high wage, and an appropriate number of completion levels in between.
    As currently defined by Job Corps, the term ``completer'' refers to 
a student who has completed at least one skill level within their 
chosen vocational training. An ``advanced completer'' refers to a Job 
Corps student who has completed all the skill sets within their chosen 
trade. It was the categorization of students who have not completed all 
the skill sets within their vocation as ``completers'' that caused GAO 
to question Job Corps' success.
    The definition of completer is important because the recently 
enacted Workforce Investment Act (WIA) establishes that completers are 
one of the two categories of student that attain the level of a Job 
Corps graduate and are therefore rendered eligible for the expanded 
post graduation services required by the WIA. Job Corps' goal is to 
ensure that all ``completers'' have achieved a skill level that makes 
them employable at a reasonable skill and wage level and is 
demonstrative of a marked level of achievement in Job Corps. 
Accordingly, we believe that WIA graduates eligible for enhanced post 
graduation services should include students who are currently referred 
to as ``advanced completers'' as well as those currently defined as 
``completers''. In response to the GAO report and in order to ensure 
that the established completion levels render graduates employable at a 
reasonable skill and wage level in each trade, Job Corps has undertaken 
a comprehensive and detailed analysis of vocational completion. This 
analysis considers time spent on-center by students, levels of 
completion achieved, and incentives provided to students to remain in 
vocational programs in order to attain maximum benefit. In addition, we 
are developing vocational competency testing to assess student 
vocational skills and provide feedback in the actual skills attained. 
We expect to complete this work by July of 1999. Where changes to 
existing TARs are warranted, we will take the appropriate corrective 
action. Ensuring that Job Corps' TARs are effectively preparing 
students for employment and that sufficient incentives exist to 
encourage students to complete as much of their training curriculum as 
possible is central to ensuring betters job placement results and long-
term earning gains for Job Corps students.
    Regarding job training matches (JTMs), we have already initiated 
changes to improve the accuracy of the data for this important 
performance indicator. Over the last year we initiated the change from 
classifying JTMS by the Dictionary of Occupational Titles to the 
Occupational Information Network (O*NET) System. In making this change, 
we have restructured our classification codes to ensure that only those 
students who are trained and matched in the same or a closely related 
occupation will be considered a job training match. For example, under 
the old system someone who was trained as a cosmetician but who entered 
employment as a sales clerk would be considered a match because they 
are both services occupations. Under O*NET, we have designed 
classification codes so that there are far fewer job training matches 
allowable for each vocational training program--someone trained as 
nurses aide, for example, will only be counted as a job training match 
if they are placed in a job specifically related to the skills they 
attained in nurses aide training (i.e. nursing home aide, hospital 
aide, etc.)
    In addition, as part of the implementation of the new O*NET system 
as the basis for the crosswalk between type of training and placement 
occupation, we are developing more stringent quality control and 
oversight procedures to preclude questionable matches. We anticipate 
that these new controls will be in effect early in Program Year 1999.
    We had previously informed the GAO that we would implement the 
O*NET system by January 1, 1999, and that the new controls would be 
operational by March of the same year. However, we moved the full 
implementation date to July 1, 1999 to coordinate the timing with a new 
program year and the Phase I implementation of WIA. This will allow us 
to implement O*NET along with the new definition of ``graduate'' and 
the requirements for establishing expected levels of performance 
focused on outcomes of graduates (including placement in training-
related jobs) required under WIA.
    Question. At a cost per enrollee of $16,771, is Job Corps still a 
cost-effective program?
    Answer. Yes. Job Corps expenditures represent a sound and 
productive investment in America's youth. Per enrollee costs in Job 
Corps (estimated in the fiscal year 2000 budget at $16,771) are higher 
than those in most other federal training programs chiefly because Job 
Corps is a residential program and the others are not. Job Corps is a 
full-time, year-around program that provides housing, meals, medical 
care and a variety of other support services to the significantly 
disadvantaged young people who become enrolled. While a small 
percentage of students participate on a nonresidential basis, the 
residential aspect of Job Corps clearly contributes greatly to the 
success of its students. Job Corps centers provide a secure environment 
in which basic education, vocational training and social skills 
development services can be delivered with maximum impact.
    Although the Job Corps expenditure per-student may appear high, the 
return on the public's investment is more than commensurate in terms of 
increased student productivity and earning power, reduced welfare 
expenditures and reductions in societal costs from criminal behavior. A 
well respected study conducted in the late 1970s and early 1980s by the 
Mathematica Research Corporation demonstrated that Job Corps returns 
$1.46 to society for every $1.00 it spends. An updated study is 
currently underway and we are confident that it will confirm that Job 
Corps continues to yield a net societal benefit of substantial 
dimension.
    Question. GAO also found that a high proportion of the job 
placements of Job Corps participants were in low skills jobs. What 
actions are being taken to change the vocations for which Job Corps is 
preparing its participants to increase their wages?
    Answer. Job Corps, as part of its ongoing effort to improve quality 
of training, has taken a number of steps to enhance vocational training 
for its students and the quality of jobs they ultimately obtain.
    At a national level, we perform an annual assessment of vocational 
training programs, including placement outcomes, to enable us to 
identify programs needing improvement. In addition, Job Corps centers 
will be establishing Industry Councils composed primarily of employers 
to analyze local labor market information, review center vocational 
offerings, and make recommendations to the Department for any training 
areas which should be modified or changed. This will help centers 
ensure that the training they provide will enable students to get 
quality jobs in the communities to which they will be returning.
    We have initiated third party independent competency tests for 
students completing 17 selected vocations. The tests confirm competency 
attainment of students, and also assist Job Corps identify course 
content and materials that require improvement. Where changes to 
existing vocational training programs are warranted, we will take the 
appropriate corrective action.
    At the beginning of PY 1998 $15 million was allocated to Job Corps 
centers to upgrade vocational equipment and classrooms. In determining 
how to best utilize these funds, centers are working with employers to 
develop plans to bring state-of-the-art equipment to existing courses 
and to develop new course offerings for training in occupations 
offering the best potential for long-term employment at a living wage.
    New policies have been implemented to give Job Corps centers 
flexibility to integrate academic and vocational curricula so they will 
be able to adapt their training to meet the needs of students and 
employers.
    We continue to upgrade the vocational curriculum and associated 
equipment requirements to meet changing labor market needs with input 
from employers to ensure that vocational courses meet industry 
standards.
    Job Corps is also integrating school-to-work principles in center 
programs to enable students to participate in project-based learning to 
gain critical employability skills.
    All of these actions are designed to enable us to make sure the 
training students receive in Job Corps will enable them to successfully 
enter long-term employment.
    Question. Your budget includes $10 million to study the impact of 
the Family and Medical Leave Act. Why does it cost so much for a study?
    Answer. This research is needed to provide broad based and 
comprehensive data on family and medical leave, including employer 
practices, employee usage, and barriers to balancing family and 
business demands. The data gathered should prove extremely useful to 
the business community, workers, the public, and policy makers in 
determining how worker productivity is affected by the availability of 
leave. Of particular interest is the direct impact on businesses, large 
and small, as they institute new leave policies, independently or in 
response to legislation, and the impediments to use of family and 
medical leave to balance the demands of work and family.
    In its 1996 report to the Congress, the bipartisan Commission on 
Family and Medical Leave Policies recommended eleven areas that needed 
additional research, including studies of employer ``best practices'' 
and the impact of family leave policies (both voluntary and statutory) 
on (1) child development and family welfare; (2) the economic 
performance of businesses; (3) temporary, part-time, and contract 
workers; and (4) containment of health care costs of the nation, 
businesses, and families; employee morale, productivity, turnover and 
retraining. We believe the research proposal contained in the fiscal 
year 2000 budget request is entirely consistent with the 
recommendations of the bipartisan Commission.
                       new job training programs
    Question. Madam Secretary, this request is the first budget 
authorized under the Workforce Investment Act of 1998, which repeals 
the Job Training Partnership Act as of July 1, 2000. This new law is 
intended to increase State and local flexibility, streamline services, 
and consolidate job training programs. Yet your budget proposes 
creating 6 new categorical job training programs at the national level, 
which are as follows: Skills Shortages Grants, Rewarding Youth 
Achievement, Right Track Partnerships, Reemployment Services Grants, 
Work Incentive Grants, and AgNet. Why are you proposing so many new job 
training programs instead of strengthening existing programs?
    Answer. Much of the consolidation of employment and training 
programs under the Workforce Investment Act is at the ``street level'' 
through the creation of a One-Stop service delivery system. Thus, even 
though services provided at a One-Stop service center are funded by 
various One-Stop partner programs administered by various Federal 
agencies, from the customer's perspective service delivery is 
``seamless.'' This means that the customer knows that he or she can 
access a variety of needed services at the One-Stop--rather than being 
referred from program to program, or place to place.
    In addition to this street level consolidation, the budget 
consolidates some programs that were formerly separate. For example, 
the Summer Youth and Youth Training Grants programs under JTPA have 
been combined into a single youth program under the Workforce 
Investment Act, and separate State education coordination and older 
worker set-asides in JTPA have been eliminated.
    The initiatives mentioned are intended to respond to problems that 
are currently not being addressed. For example, Right Track 
Partnerships, Skill Shortage Grants, and Work Incentive Grants each 
utilize the newly created Workforce Investment system. The Right Track 
Partnership initiative will provide $100 million in competitive grants 
to Empowerment Zones/Enterprise Communities and similar areas to keep 
low income youth from dropping out of school and to assist recent 
dropouts in returning to school.
    Skills Shortage grants are competitive grants which will be made to 
a consortia of local workforce boards and national skill alliances to 
identify skill shortages and target resources on industries struggling 
to fill jobs, identify workers needing training, and provide training 
and job placement services. The Administration is also requesting 
legislation to finance these Skill Shortage grants with fees paid by 
employers applying for foreign workers through labor certification 
programs. Once enacted, these fees will be used to finance Skill 
Shortage grants, and the $40 million in budget authority being 
requested in the Dislocated Worker program for these purposes will be 
eliminated.
    The budget also includes $50 million for competitive Work Incentive 
Grants to partnerships or consortia in each State to improve access, 
accommodation, benefits, services, and employment opportunities, 
through One-Stop centers, to individuals with disabilities.
    Rewarding Youth Achievement is not a new categorical program, but 
rather a demonstration within Youth Opportunity Grants providing 
economically disadvantaged youth in high poverty areas with longer-term 
summer jobs opportunities and bonuses for academic performance. 
Similarly, AgNet is not a categorical program, but rather an 
information system devoted to the agriculture industry which contains 
job opportunities and worker resumes. Finally, Reemployment Services 
Grants totaling $53 million will provide increased reemployment 
services to Unemployment Insurance claimants through the States' 
existing employment service programs.
                      skills shortages initiative
    Question. You are requesting bill language to earmark $40 million 
for a skills shortages initiative to fund grants to local workforce 
boards to identify skills shortages and target resources on industries 
struggling to fill those jobs. Why do you need a bill language earmark? 
Can you give us an example of the type of project you would contemplate 
funding?
    Answer. The $40 million requested to be earmarked in the bill 
language, is for national grants for targeted dislocated worker 
projects under WIA, which is subject to legislatively defined 
distributions through the formula and the 20 percent set aside for 
national emergency grants, technical assistance and demonstration 
projects. However, the skill shortage initiative will have a close 
connection to the programs under WIA and what will be learned through 
the initiative will have impact on the programs.
    These funds will be used for grants to projects that retain 
dislocated workers in industries struggling to fill jobs in these 
shortage areas.
    Question. You are also requesting authorizing legislation to pay 
for this program through user fees. Why should Congress appropriate 
funds for this program before user fee legislation is enacted?
    Answer. The Administration is seeking legislation to collect user 
fees from employers seeking foreign workers under the permanent alien 
certification program. Once enacted, these fees, similar to those 
collected under the recently authorized H1-B program for temporary 
visas for foreign workers, will be used for the Skill Shortages grants 
and for federal administrative costs in ESA. At that point, the budget 
authority requested ($40 million) will be reduced and the initiative 
will be financed by fees. Providing appropriated funds will allow the 
planning and start-up of this initiative to proceed in a timely manner, 
while the legislative process for the user fees is underway.
                   rulemaking process for ergonomics
    Question. On February 19, 1999, the Labor Department outlined its 
new proposal for a standard to protect workers against musculoskeletal 
disorders, although I understand a formal proposal will not be issued 
until September, and won't be finalized until sometime in 2000. Why 
will it take so long to put an ergonomics standard in effect?
    Answer. OSHA's draft proposed ergonomics program rule has just 
completed a sixty day review by a Small Business Regulatory Enforcement 
Fairness Act (SBREFA) Panel, as required by the amended Regulatory 
Flexibility Act. OSHA will now need to respond to the comments made by 
the panel and to prepare a new draft before sending the proposed rule 
to OMB for review. OMB review normally requires up to 90 days. These 
two review processes will not be completed until September, at which 
time OSHA intends to propose the rule in the Federal Register.
    Publication in the Federal Register begins the full public 
participation part of the rulemaking process, during which the public 
comments on the rule, questions OSHA and other witnesses in public 
hearings, and submits post-hearing comments to the agency. The public 
comment process will likely not be complete until sometime in the year 
2000. Once the record in the rulemaking is closed, the agency must 
analyze and provide responses in the preamble to the final rule to all 
substantive comments made by the public; revise the final rule to 
reflect these comments; and submit the rule for OMB review before 
publication in final form. Although the rulemaking process is slow, it 
is designed to ensure that all interested parties have time to comment 
on the rules that Federal agencies promulgate and that agency 
rulemakers review these comments carefully and base their regulatory 
decisions on the evidence in the record as a whole.
             costs and benefits of proposed ergonomics rule
    Question. What do you estimate will be the implementation costs to 
employers, and the long-term savings from reduced injury rates?
    Answer. At this time, OSHA has only developed a very preliminary 
estimate of the first year costs and benefits of the draft proposed 
ergonomics program rule for use by the SBREFA Panel. According to these 
rough estimates, the proposed standard would have first year costs to 
employers of $3.5 billion and would return direct cost savings of $4.7 
to $14 billion in MSDs prevented.
                requirements of proposed ergonomics rule
    Question. Briefly describe your ergonomics proposal, and the 
regulatory burden it will place on employers.
    Answer. In a typical year, covered employers whose employees do not 
incur an MSD (estimated to be 75 percent of all covered employers) 
would only be required to become familiar with the proposed rule, i.e., 
to become aware of their obligations if a work-related MSD occurs in 
their facility. Employers who are engaged in manufacturing and manual 
handling operations would need to establish a basic program, unless 
they already have one. The basic program would only require employers 
to tell their employees about ergonomics hazards, how to identify those 
aspects of their jobs that pose ergonomic risks, their signs and 
symptoms, and how to report them to the employer. The employer would 
also respond to these reports in a timely manner. An estimated 626,000 
(1997 BLS data) employers who actually have MSDs in their facilities 
would need to implement the full ergonomics program, which requires 
hazard analysis and control, training for affected employees and their 
supervisors, and medical management. Thus, the draft rule tailors the 
program any given employer needs to implement to the magnitude of the 
ergonomic hazards in that employer's workplace.
        national occupational information coordinating committee
    Question. What will be the impact of your budget proposal to zero 
out the $9 million appropriation for the National Occupational 
Information Coordinating Committee (NOICC)?
    Answer. The Job Training Partnership Act authorizes NOICC, but it 
is repealed and replaced by the Workforce Investment Act of 1998, which 
does not authorize NOICC or its activities. Thus, NOICC and the State 
Occupational Information Coordinating Committees (SOICCs) will close 
down by July 1, 2000. However, Section 118, Occupational and Employment 
Information, of the Carl D. Perkins Vocational and Technical Education 
Act of 1998 (Perkins 98) authorizes the Secretary of Education to 
continue many of the activities and services currently carried out by 
the NOICC and SOICCs. If Section 118 is funded and supported and 
Education adopts the services and products developed by NOICC and 
SOICCs, most products and services can be continued and expanded and 
the impact on customers should be minimal. In addition under the 
Workforce Investment Act, individuals will have expanded access, 
through the One-Stop delivery system, to labor market and career 
information through tools such as ALMIS, America's Talent Bank, and 
O*NET. The Department and NOICC will ensure an orderly phaseout and 
close out of the NOICC and SOICCs by June 30, 2000.
             state spending of welfare-to-work grant funds
    Question. Total outlays for the Welfare-to-Work program in fiscal 
year 1998 were $16 million out of the $1.5 billion awarded. And outlays 
for the program in fiscal 1999, up through February are $64 million. 
What is your explanation for the low rate of expenditure so far in the 
Welfare-to-Work program?
    Answer. Thirty-nine of the forty-eight states and territories (81 
percent) that submitted Welfare-to-Work (WtW) grant proposals received 
their formula grants in the last two quarters of 1998. States that 
received grants in the last quarter of 1998, including California, New 
York, Illinois and Florida had some of the largest welfare caseloads in 
the nation. We expect the rate of expenditures to accelerate in 1999, 
as states get their programs up and running, and move further along in 
smoothing out start-up issues related to recruitment and referral. 
Given previous experience with implementing new welfare programs, such 
as JOBS, a slow start up is not unexpected. The 48 WtW States and 
territories face the challenge of completely revamping a 60 year-old 
system.
    Question. The Administration estimates that outlays for the program 
in fiscal year 1999 will total $872 million. How have you arrived at 
this number when outlays have been moving at such a slow pace?
    Answer. The outlay estimates were determined when little 
information was available on the actual spending by States. Also, the 
estimates assumed that almost $899 million of the fiscal year 1999 
formula funds would be awarded by March, 1999, our original goal for 
receiving fiscal year 1999 State plans. As of April 19, 1999, only five 
States have approved plans and there are ten State plans pending 
approval.
    We now know that the time needed to implement this program and 
enroll individuals in it is taking much longer than anticipated, 
largely because both the grantees and the administrative structure are 
new. The States and other entities administering this program are 
quickly gaining experience, and there is no doubt that we will soon see 
a fully functioning program, putting former welfare recipients into 
jobs.
    Question. Are States having difficulty spending this money, or is 
there simply not enough demand?
    Answer. The demand for Welfare-to-Work (WtW) funds is tremendous; 
however, expenditures have been slowed by two issues: (1) strict 
eligibility requirements that may exclude the truly hardest to serve, 
and (2) the difficulty in developing participant referral systems.
    The strict eligibility criteria requiring that 70 percent of the 
funds be spent on individuals who are long-term welfare recipients and 
have two of three specified barriers to employment has limited states' 
ability to serve many truly needy individuals and has slowed 
recruitment. For example, an individual who has a reading level below 
the 8th grade may be ineligible for WtW if that person holds a high 
school diploma. Under the Department's proposed reauthorized program, 
this eligibility criteria will be simplified, requiring long-term 
recipients to meet only one employment barrier and allowing States to 
serve more of the neediest individuals. Approximately 1 million adults 
on TANF are estimated to meet the proposed hardest-to-employ 
eligibility criteria and more than 1 million noncustodial parents are 
projected to be eligible for WtW services under the proposed 
reauthorization.
    Second, State workforce development systems continue to build 
relationships with State welfare systems. A February 26 GAO report on 
welfare and workforce agency coordination indicates that one of the 
major challenges that remains in reforming welfare is developing 
working partnerships that bring the workforce development and welfare 
systems together. The feedback of grantees to the Department of Labor 
supports this finding: grantees indicate that the difficulty of 
developing participant referral systems has been a factor in slow 
start-up. A series of jointly sponsored HHS-DOL conference calls and 
workshops scheduled to take place in May and June will bring together 
these two systems to address referral issues.
    In addition, in rounds one and two of the WtW competitive grants, 
over 1,400 applicants across the nation requested more than $5 billion 
in grant assistance while DOL awarded $468 million to 126 grantees.
    Question. Why would we need the additional $1 billion you are 
requesting for this program in fiscal year 2000?
    Answer. A strong economy combined with welfare reform has resulted 
in a steep decline in the numbers of families receiving welfare. But 
our job of aiding the neediest is not finished. Those individuals who 
remain on the rolls encounter more serious barriers in their road to 
employment, including having poor basic skills, physical or learning 
disabilities, minimal work experience, limited English proficiency, 
substance abuse problems and domestic violence problems. As time limits 
on welfare receipt begin to take effect, these individuals are in 
particular need of targeted assistance to help them gain, retain and 
advance in employment. WtW can continue to help individual get or keep 
a job through wage subsidies, direct job creation or other work 
support, even after they have exhausted their TANF benefits. For those 
who have found a job, WtW makes sure they keep that job and make a full 
transition to self-sufficiency.
    WtW is also an important tool in helping noncustodial parents meet 
their obligations to their children. While TANF has historically 
focused on custodial parents, states and local communities are using 
WtW funds to find new ways to help noncustodial parents build their 
capacity to pay child support. The proposed reauthorization will expand 
the WtW focus on fathers and strengthen the links to child support 
enforcement.
    Finally, the demand for competitive grants is a useful indicator of 
the importance of this program at the local level. The Department has 
received more than 1,400 applications, requesting approximately $5 
billion in the first two rounds of competition, in which the Department 
awarded $468 million to 126 grantees in local communities throughout 
the nation. More than 250 members of Congress wrote to the Department 
in support of the competitive applications from their communities. A 
reauthorized WtW will allow funding for additional competitive grants 
to local communities.
    Question. Couldn't funds available from the Temporary Assistance 
for Needy Families, which also has large unspent carryover balances, 
also be used for job training for welfare recipients?
    Answer. According to the most recent data on TANF expenditures, 
states have obligated between 80 and 85 percent of their fiscal year 
1998 TANF funds. In fact, close to half the states have obligated all 
of their fiscal year 1998 funds. In addition, many states have made 
considered choices to save these funds in the event of state population 
increases or an economic downturn.
    Welfare-to-Work, as opposed to TANF, is targeted to serve the 
hardest-to-employ welfare recipients. WtW funds are an essential 
component of helping move the most disadvantaged welfare recipients 
into sustained employment. As part of the workforce development system, 
WtW is better positioned to link welfare recipients to the workforce. 
While the TANF block grant is based on historical spending patterns, 
most WtW funds flow automatically through the states to the communities 
with the greatest needs. WtW funds can be used to employ noncustodial 
parents of children on welfare and other individuals who are not 
recipients of assistance, whereas many states could not use TANF monies 
for this purpose without extensive changes to a state's TANF plan. 
Finally, because they are administered by local workforce boards, WtW 
funds ensure the involvement of local communities and businesses.
                          parenting education
    Question. Madam Secretary, I understand that your Department is 
developing programs for parenting education as part of the welfare-to-
work initiatives. I've seen in Alaska the need to help parents on 
welfare develop skills in parenting, especially as they prepare 
themselves to enter the workforce, and I support these efforts. I've 
been talking about the need for parenting education with Janet Reno, 
Donna Shalala, and Secretary Riley as well. Parents who know what their 
responsibilities are to their children are probably the most important 
determinant of all in raising their children with a good chance to lead 
healthy and productive lives.
    Can you tell me what you and the Department are doing about 
parenting? Would you be willing to work with these other Departments on 
a consolidated approach to training parents?
    Answer. Good parenting skills are important for the success of 
children, youth and young adults in the worlds of education, work and 
to become a contributing citizen. Our Out-of-School Youth 
demonstrations provide what we call ``Life Skills Training'' which 
includes training for parents with children and being able to address 
the need to work and the need to be good parents. The life skills 
training component of our programs focuses on both ``hands-on'' 
demonstrations and assistance, as well as literature and other sources 
of information that are made available to participants. Assistance 
includes home visits, information on dietary needs, being a positive 
role model, maintaining an orderly home environment, getting kids to 
school, health issues, and social issues. The project in Barrow, Alaska 
is developing a component to provide training and assistance with 
parenting skills. This program is currently being expanded to include 
all the villages of the Northern Slope.
    Other training and employment projects to be funded in Anchorage 
and Nome will include a Life Skills training component. To work on 
these efforts with Attorney General Janet Reno, Secretary of Health and 
Human Services Donna Shalala and Secretary of Education Riley could 
only increase the benefits to the program participants and I look 
forward to establishing linkages with other agencies to focus on this 
subject area.
                      ``alaska works'' partnership
    Question. Madam Secretary, there is a shortage of trained and 
experienced skilled construction workers in Alaska. There are about 
13,000 persons employed in the construction industry in Alaska today, 
and an estimated need for another 1,000 skilled workers in 1999. The 
Alaska Department of Labor estimates that in 1996, over $91 million in 
wages were paid to non-residents of Alaska working on Alaska 
construction jobs. At the same time, our Alaska Native people are 
under-represented by almost 40 percent in the Alaska construction 
industry, according to a 1998 report issued by the University of 
Alaska, Anchorage. Many of our rural Alaska Native people are 
chronically unemployed and have not been trained in the skills which 
would qualify them for these well-paying jobs in Alaska. As part of the 
``Alaska Works'' national program to train minorities and women for 
skilled jobs in construction and other fields, the ``Alaska Works'' 
partnership will be proposing a demonstration project to train 
chronically unemployed, unskilled Alaska Natives and other residents to 
qualify for the many skilled well-paid jobs that are expected to be 
available in Alaska over the next several years. Will your Department 
work with us to help train Alaskans to work as skilled workers on 
Alaskan construction projects?
    Answer. We look forward to working with Alaska Works to train 
Native Alaskans for high skill, high paying jobs in Alaska. Currently, 
our Bureau of Apprenticeship and Training is working with construction 
firms that work in Alaska developing Apprentice positions for Native 
Alaskans in the construction trades.
    We are aware that Native Alaskans are under represented in the 
building trades. One of the training components in our Barrow, Alaska 
project is to train residents in construction. We are also working to 
get employers to help design the training curriculum and provide on-
the-job training opportunities and jobs when individuals complete their 
training. This is on a very small scale. However, we look forward to 
increasing the size of this program throughout the villages on the 
Northern Slope and in other areas of the State.
    In Barrow our grantee, the Ilisagvik College, conducts a Building 
Maintenance program which renovates the college facilities. Recently, 
the college has added construction training to this program. Students 
are learning through hands-on experience by constructing a building on 
the college campus. We intend to continue this effort and expand 
training opportunities to residents of the villages of the Northern 
Slope.
              calculation of unemployment rates in alaska
    Question. For some time I have been puzzled by statistics issued by 
the Labor Department which purport to show that unemployment rates in 
many small, remote Alaska villages and towns are only three or four 
percent, where we know, in fact, that true rates of unemployment are in 
fact between 50 and 90 percent. We know that, especially in the winter, 
many villages only have four or five paying jobs, and that many 
residents would like to work, but no jobs are available. Some months 
ago, my staff met with representatives of the Department on this issue. 
My staff was told that in order to be considered ``unemployed'', a 
person must be registered with an unemployment office and report back 
on a regular basis on the results of job searches. Madam Secretary, in 
most Alaska villages, there are no unemployment offices. Villagers 
cannot travel back and forth from village to village because there are 
no roads. These Alaskans want to work and are available to work. But 
they are not counted as unemployed. Since official unemployment figures 
are used to determine eligibility for a broad range of federal 
programs, this method of determining unemployment has extremely 
negative consequences for many Alaskans who are in great need of our 
help. Will you work with us to develop an accurate method of measuring 
true unemployment in rural Alaska and in other parts of the country 
where the same situation may apply?
    Answer. Various programs of the Bureau of Labor Statistics (BLS) 
provide statistics on the employment status of the nation's population. 
The Current Population Survey (CPS) is the source of national monthly 
labor force measures. For state or local areas, the BLS Local Area 
Unemployment Statistics (LAUS) program uses the CPS data in estimating 
methodologies that generate monthly statistics at the State and area 
levels.
    All of these BLS programs use the same official concepts of 
``employed,'' ``unemployed,'' and ``not in the labor force.'' These 
concepts are periodically reviewed by independent commissions, and have 
been used, essentially unchanged, for decades. Of particular 
significance to areas like Alaska Native Villages is the requirement 
that individuals who do not have a job must actively seek work in order 
to meet the classification of ``unemployed.'' If they do not actively 
seek work perhaps because they believe there are no jobs in the area or 
because of adverse weather they are considered ``not in the labor 
force.'' Since the unemployment rate is defined as the percentage of 
the labor force (employed plus unemployed persons) that is jobless, 
persons who are not actively seeking work and therefore not in the 
labor force are not counted in the unemployment rate.
    It is important to note that ``actively seeking work'' is not 
limited to the filing for or receipt of unemployment benefits. 
Registration at a local unemployment office is only one of a number of 
methods of job search that would classify a person as unemployed.
    In Alaska, LAUS estimates are developed for the State and 37 other 
areas, the smallest of which is Yakutat Borough, with a labor force of 
just over 300 persons and a preliminary 1998 unemployment rate of 12.4 
percent. Although published LAUS subcounty or sub-borough estimates are 
restricted to areas above 25,000 population, the BLS provided the 
Research and Analysis Section of the Alaska Department of Labor with 
decennial census data that could be used to develop Alaska Native 
village estimates that are consistent with official methodology. The 
census data were provided to the Alaska agency to assist the State in 
complying with Welfare Reform legislation that required official LAUS 
unemployment rates in administering the Temporary Assistance to Needy 
Families (TANF) program. Subsequent amendments allowed for the use of 
employment/population ratios in administering TANF at the village 
level. These employment/population ratios are likely to be more 
appropriate for the situations of the Alaska villages that you 
describe.
    The BLS believes unemployment is only one of a series of measures 
of labor market conditions. The economic statistics used to administer 
federal programs are determined either through law or by program 
regulation. Perhaps in certain circumstances the unemployment rate is 
not the appropriate measure to use for a specific decision such as fund 
allocation or eligibility determination. If so, that Federal agency 
responsible for administering the specific benefit program may need to 
look at their criterion.
                      year 2000 computer compliant
    Question. The Y2K deadline is fast approaching. Can you assure the 
public that people receiving unemployment insurance benefits and 
retirees receiving pension checks will receive them in January 2000?
    Answer. In addition to ensuring that all of DOL's mission critical 
systems were repaired or replaced by March 31, the Department has 
worked actively with our program partners, such as State and local 
government agencies and private sector organizations, in preparing for 
the Year 2000 and ensuring the uninterrupted delivery of benefits and 
services to America's workers. People receiving UI benefits should 
anticipate no interruptions in service in January 2000. The Department 
and our program partners will direct attention to providing retirees 
with a similar level of confidence in the receipt of their pension 
checks.
Unemployment insurance
    The State Employment Security Agencies (SESAs) successfully passed 
an early test of the UI program's readiness for the year 2000 in 
January 1999 when the SESAs' automated systems first encountered the 
year 2000 in the processing and payment of new claims. UI systems 
establish a benefit year ending date, 52 weeks from the filing date, 
for each first-time claim; therefore, claims filed in January 1999 have 
benefit years extending into the year 2000. Although some SESAs used 
temporary system ``fixes'' to process new claims while permanent Year 
2000 repairs or replacement systems are completed, claimants' benefits 
were paid on time.
    Both DOL and the SESAs recognize that additional actions are 
required to fully prepare UI for the transition into the next century. 
For example, SESAs must ensure that permanent solutions to achieve full 
Year 2000 compliance for UI benefit, tax and wage record systems are 
implemented. In accordance with UI guidance, SESAs are required to 
complete Independent Verification and Validation (IV&V) assessments of 
their systems to identify and correct any remaining risks of Year 2000 
failures. The SESAs are preparing and will test Business Continuity and 
Contingency Plans which present the agencies' plans for delivering 
benefits and essential services in the event a Year 2000 problem 
arises, despite the program's best efforts. The Department will 
continue to provide oversight, training and technical assistance to our 
UI program partners, to monitor the progress of the SESAs, and to 
coordinate actions to notify the public of the UI program's readiness 
for the Year 2000.
Pensions
    The Department is reasonably confident in the readiness of many of 
the regulated service providers, e.g., the insurance industry, banks 
and investment firms. Articles in the April 1, 1999 issue of Best's 
Review support our conclusion that most major insurance companies are 
prepared to transition into the Year 2000 without significant problems, 
and the Comptroller General recently voiced his satisfaction with the 
condition of the banking industry. Periodic reports from the Securities 
and Exchange Commission and the successful Wall Street test conducted 
on April 11, 1999 indicate a high level of readiness by the Nation's 
investment firms. The Department will be directing its attention during 
the remaining months to the progress of medium-sized plans serving more 
than 100 but fewer than 1,000 participants.
    The Department has conducted extensive outreach efforts to alert 
officials who administer 700,000 private sector pension plans and 4.5 
million other employee benefit plans of the Year 2000 problem and their 
responsibility to correct their systems, ensure the Year 2000 
compliance of service providers and prepare for contingencies. Outreach 
efforts have included news releases, information on the DOL website, 
and meetings with officials at all levels of the employee benefit plan 
community.
    In conjunction with our pension industry oversight and enforcement 
responsibilities, the Department has undertaken several Year 2000 
initiatives, including working with the American Institute of Certified 
Public Accountants to ensure that its 1998 Audit Risk Alert contained a 
section giving guidance to employee benefit plan auditors on informing 
clients about preparedness. In addition, the Department's investigators 
are reviewing Year 2000 progress as part of their civil investigations 
of employee benefit plans across the country.
    Question. I notice that you are proposing a sizeable increase in 
spending on Information Technology (IT). To what extent is this an 
outgrowth of the Y2K focus? How important are IT investments to your 
ability to get your job done?
    Answer. The Information Technology (IT) cross-cut will allow the 
Department to tackle common problems across agencies in a cohesive and 
consistent manner. The $30.7 million included in our budget is to 
ensure that the Department meets the legislative mandates of the 
Clinger Cohen Act, Paperwork Reduction Act, Computer Security Act, Year 
2000 challenge and the Office of Management and Budget's (OMB) policy 
on the management of information resources and technology within the 
Department.
    The cross-cut includes funding for program specific DOL IT 
initiatives such as ETA's America's Labor Market Information 
Initiative, ESA's LMRDA Electronic Reporting and Internet Public 
Disclosure and FECA IT/Paperless Injury Compensation projects, and 
PWBA's Form 5500 Information Dissemination Internet Project, all of 
which improve delivery of our services to our customers. It also 
includes funding for the IT infrastructure needed to enable us to 
continue the efficient and effective accomplishment of departmental and 
agency missions, strategic goals and objectives.
    Proactive planning in our IT infrastructure area is allowing the 
Department to look ahead and plan for transition to a Departmental IT 
Architecture and improved web services capability. Combined, these two 
projects will allow the Department to tackle common problems across 
agencies in a cohesive and consistent manner.
    Although Y2K helped the Department to focus its IT resources on 
solving problems beyond immediate Y2K concerns, it is only one 
component of the Department's planning and budgeting efforts for fiscal 
year 2000 and beyond. We also have included funding to begin an 
important new initiative; compliance with the mandates of Presidential 
Decision Directive 63, Protecting the Nation's Critical Infrastructure. 
This Directive focuses additional, much needed attention on security, 
in acknowledgment of our country's growing dependence on interconnected 
cyber-systems, and those systems' potential vulnerability to hostile 
attack. I am committed to ensuring that the appropriate security plans 
and controls are implemented.
    Continued IT spending is critical to the Department's ability to 
support our missions and provide essential services to the American 
Public. The Department's new, enhanced IT Capital Investment Management 
process is being implemented this year and is being used to select, 
control, and evaluate the Department's IT investments as required by 
the Clinger Cohen Act. This will continue to ensure that the 
Department's IT investments are carefully managed and evaluated as to 
their effectiveness.
                            alaska projects
    Question. I am very pleased with the Alaska projects that have been 
undertaken with employment and training funds.
    Could you describe the status of the project provided with $500,000 
in dislocated worker funding for the Bethel Native corporation in 
Bethel, Alaska to provide high technology computer-based training to 
Alaska Natives, and what you envision for the future?
    Answer. The fiscal year 1999 Appropriations Conference report 
language directs the Secretary to provide $500,000 to the Bethel Native 
corporation in Bethel, Alaska. Departmental staff have been in contact 
with the representatives of the Bethel Native corporation. The 
Department will fund this grant during Program Year (PY) 1999 (on or 
after July 1, 1999) upon receipt of a viable proposal from the grantee.
    Question. Can you describe the status of the following projects 
provided with funding and what you envision for the future?
  --$1.25 million in pilots and demonstrations funding for Ilisagvik 
        College in Barrow, Alaska;
  --$250,000 in pilots and demonstration funding for the Koahnic 
        Broadcasting, Inc. in Anchorage, Alaska;
  --$1 million in pilots and demonstrations funding for Kawerak, Inc. 
        in Nome, Alaska, for continuation or initiation of vocational 
        job training programs for Alaska Natives; and
  --$1 million in pilot and demonstration funding for the Alaska 
        Federation on Natives Foundation, consistent with the goals of 
        section 13 of the bylaws of that organization, to develop and 
        train highly skilled Alaska Native workers for year-round 
        employment within the petroleum industry.
    Answer. Funds for these initiatives will become available July 1, 
1999. Staff have already had communication with Ilisagvik College in 
Barrow, the Koahnic Broadcasting, Inc., in Anchorage and the Kawerak, 
Inc. in Nome to provide guidance on submission of their proposals which 
will include a detailed description of the education, training, 
employment and supportive services that will be provided to 
participants.
    We plan to work with each grantee to develop a system of training 
and employment activities that will link with U. S. Department of 
Labor, Employment and Training Administration's formula funded 
programs, State and local funded programs which will leverage resources 
and make it possible for the services to continue beyond these special 
funds. We are also looking forward to developing partnerships with 
other service providers funded by other Federal Agencies to be able to 
address needs of participants that cannot be supported with Employment 
and Training funds, i.e. health care, alcohol and drug treatment and 
housing.
                      family and medical leave act
    Question. In your briefing on the DOL budget you mentioned 
supporting expanding the FMLA to include smaller businesses. The 
President has claimed that this will not be a burden on small 
businesses. On what basis is such a claim made?
    Answer. The President has proposed lowering the coverage threshold 
for FMLA because a great many workers are not covered by the current 
law. He believes this expansion will not be a burden on smaller firms. 
The FMLA does a good job of accommodating business interests with the 
needs of working men and women. The bipartisan Commission on Family and 
Medical Leave's report to Congress, entitled ``Workable Balance,'' 
provides some interesting data on the impact of the statute on 
businesses. That study suggests that employers have not had serious 
problems complying with the law. Smaller firms tended to have fewer 
problems than did larger firms. The Commission also found that more 
than nine in ten covered employers said it was ``very easy'' or 
``somewhat easy'' to administer. We believe expanding coverage to more 
small businesses will help workers without harming employers.
    Our enforcement experience supports this view. As of September 30, 
1998, the Department's Wage and Hour Division completed action on 
13,500 complaints--a small number given the millions who have taken 
time off under FMLA. Nearly ninety percent of the complaints alleging 
an FMLA violation were successfully resolved--many with a simple phone 
call.
    We have gone to great lengths to inform the business community and 
the public about the law, and our efforts have paid off. The evidence 
from the Commission's report and the Department's experience suggests 
that there have not been widespread problems or abuses under the FMLA.
    Question. Have you discussed these proposals with small businesses 
to elicit their views?
    Answer. Cost to businesses was a serious concern when the Family 
and Medical Leave Act was first passed. But most employers covered by 
the FMLA have found compliance to be relatively easy and low-cost, as 
the work of the bipartisan Commission on Family and Medical Leave has 
shown. Nine out of ten employers found the law ``very'' or ``somewhat'' 
easy to administer, and for 89 to 99 percent of businesses compliance 
with the law entailed little or no cost. In fact, smaller firms tended 
to have fewer problems than did larger firms. We believe the assertion 
that expanding the FMLA will be too costly for covered businesses will 
prove to be as groundless as it was when the law was first passed.
    Question. You have also suggested that the FMLA be expanded an 
additional 24 hours to include parental involvement leave and routine 
medical appointments. Why do you believe that such leave should be 
included?
    Answer. The President believes that today's working families need 
more help in their struggle to find the time they need to meet 
tremendous responsibilities as parents to their school-age children and 
often, at the same time, to care for elderly parents. The 
Administration supports amending the FMLA to allow covered and eligible 
workers to take up to 24 additional unpaid hours of FMLA leave each 
year to care for children or parents under circumstances not now 
covered by the law. For example, these 24 additional hours of FMLA 
leave could be taken to. (1) participate in children's school 
activities directly related to their educational advancement, such as 
parent-teacher conferences; (2) accompany a child to dental or medical 
appointments, such as check-ups or vaccinations; and (3) accompany an 
elderly relative to medical appointments or appointments for other 
professional services (e.g., interviewing at nursing or group homes).
    Question. Has the Department discovered evidence that would suggest 
that there is a need for such expansion?
    Answer. As the President has stated, we all share a stake in the 
strength of our families. Our society can never be stronger than the 
children we raise or the families in which we raise them. Dramatic 
changes in the workforce and the effects on the family demand a closer 
look at this issue. For example, according to the Urban Institute, the 
vast majority of married couples with children are spending more total 
time in paid work than they did in the 1970s or 1980s. Husbands worked 
an average of 2096 hours in 1979 and 2159 in 1994. Wives worked an 
average of 581 hours in 1979 and 1168 in 1994. Many working adults must 
also care for elderly relatives. In 1997, one-quarter of workers had 
provided special assistance to someone 65 years or older within the 
last year.
    Mothers in the 1950s and 1960s often did not return to the labor 
market until their children were in elementary school. In the 1970s and 
1980s, most women waited until their children were in preschool. By 
1995, 55 percent of women who had a child within the previous year were 
in the labor force.
    Single parents face special challenges in balancing work and family 
needs. Between 1970 and 1997, single female headed families increased 
from 17 percent to 27 percent of all families with children, and single 
father headed families increased from 1 to 5 percent of all families 
with children.
    By expanding Family Leave to cover children's doctor visits and 
parent-teacher conferences, and other routine but important family 
activities, we can enable millions more of our fellow citizens to 
balance their responsibilities at home and at work.
    Question. Wouldn't making compensatory time and more flexible 
scheduling available to overtime-eligible employees accomplish the same 
goal of providing employees with more flexibility but without the 
paperwork burden?
    Answer. The purpose of the federal rules on overtime pay are quite 
different than the purpose of FMLA. The Fair Labor Standards Act (FLSA) 
of 1938 contains an overtime requirement primarily to discourage 
overtime work and thereby provide additional jobs. The law presumes 
that employers (not employees) set and control the number of hours to 
be worked--at least in the absence of a collective bargaining 
agreement. Overtime traditionally has not been viewed as an employee 
benefit, but as a financial incentive to employers to hire additional 
workers or as compensation for having to work long hours. In addition, 
any use of compensatory time off in lieu of cash overtime wages would 
only affect nonexempt, FLSA covered employees whowork overtime, not all 
employees.
    Question. As you know, when the FMLA was passed, Congress intended 
that it be used for childbirth, adoption and ``serious health 
conditions'' such as cancer and other life threatening illnesses. In 
recent years the DOL has, through opinion letters, concluded that a 
serious health condition is any illness that lasts three days, requires 
a doctor's visit and a prescription. How is it that a ``serious health 
condition'' can now mean the common cold or a hangnail? How can you 
justify such an expansion?
    Answer. The definition of ``serious health condition'' has been a 
source of much debate and controversy from the onset centering 
primarily on employer's concerns that everyday minor illnesses, like 
the common cold, the flu or sore throats, for example, should not be 
covered by the law. In fact, as a result of public notice-and-comment 
rule making process, those illnesses are listed in the Department's 
regulations as examples of conditions that, ordinarily would not be 
covered by the FMLA because they do not typically require the kind of 
qualifying treatment by a health care provider or last very long. On 
the other hand, a serious, complicated case of the flu, affecting an 
older worker or a very young child, may meet all of the tests in the 
regulations for a qualifying serious health condition a period of 
incapacity of more than three consecutive calendar days that also 
involves qualifying ``continuing treatment'' by a health care provider.
    In developing the regulatory definition of a ``serious health 
condition,'' and in explaining of that definition and resolving 
complaints, the Department relied faithfully and extensively on the 
express language of the statute and the detailed legislative history. 
The Department's intent is to ensure that the definition accurately 
reflects Congressional intent and the purposes of the FMLA to grant to 
eligible employees all the protections of the law in situations where 
FMLA leave is really needed.
    The Committee report on the FMLA lists examples of ``serious health 
conditions,'' but goes on to specifically state that the list is was 
not intended to be an all-inclusive list but examples of conditions 
that shared a ``general test that either the underlying health 
condition or the treatment of it requires that the employee by absent 
for m work on a recurring basis or for more than a few day for 
treatment or recovery.'' The Congressional report notes further that 
each of the examples also involved either inpatient care ``or 
continuing treatment or supervision by a health care provider . . . .'' 
The Congressional report notes elsewhere that the Act's definition of 
``serious health condition'' is broad and intended to cover various 
types of physical and mental conditions that affect an employee's 
health ``to the extent that he or she must be absent from work on a 
recurring basis or for more than a few days for treatment or 
recovery.'' (See, e.g., Report form the Committee on Education and 
Labor (H.R. 1), Report 103-8, Part 1 (February 2, 1993). Pp. 40-41.) 
Wage and Hour opinion letters on this issue do not ignore statements of 
Congressional intent, but rather track them closely, as does the 
Department's regulatory definition of ``serious health condition.''
    Question. You have frequently mentioned that the FMLA is ``working 
well'' and that there is little burden on employers. You often sight 
the FMLA Commission survey results as evidence. Yet, as you know, those 
surveys were conducted before the FMLA regulations were even finalized 
and before companies had much experience with compliance. Is the 
Department planning on conducting additional surveys this year to 
determine both the cost and administrative impact of complying with the 
FMLA, particularly before considering expansion?
    Answer. It is correct that the bipartisan Commission's findings are 
based on employer and employee surveys conducted in the early years 
following the enactment of the FMLA. However, we believe the 
Commission's findings are reliable. The law became effective on 8/5/93 
and the interim regulations were issued 6/4/93, two years before the 
Commission's survey of employers. Although, the final regulations were 
issued three months prior to the survey period (3/95), we have no 
reason to believe that the relatively minor changes in the regulations 
from interim to final versions would affect the outcome of the study.
    As discussed earlier, the fiscal year 2000 budget request includes 
$10 million for additional research on family and medical leave, 
addressing many of the recommendations of the Commission for further 
research. This research is needed to provide broad based and 
comprehensive data on family and medical leave, including employer 
practices, employee usage, and barriers to balancing family and 
business demands.
                             equal pay act
    Question. The measured gender pay gap does not account for relevant 
economic factors influencing wages, such as experience and tenure, 
years and type of education, hours of work, and industry and 
occupation, therefore, it is wrong to attribute the measured gender pay 
gap solely or even primarily to workplace discrimination. Will using 
the proposed increased funding for equal pay initiatives, which will 
include training, technical assistance and outreach, effectively 
satisfy the differences between actual workplace discrimination versus 
relevant economic factors so that employers can avoid frivolous fines 
and lawsuits?
    Answer. As we have set forth in our appropriations request, we will 
use the funding to help women obtain and retain employment in non-
traditional jobs by identifying and disseminating model employer 
practices and assisting contractors in identifying resources for 
recruiting qualified women employees, including through the new 
nationwide network of One Stop Career Centers established by last 
year's Workforce Investment Act. In addition, we will increase 
outreach, education, and technical assistance to federal contractors to 
help eliminate discrimination in compensation. Providing employers with 
the tools to identify and remedy pay differences will benefit both 
employers and workers and thus will reduce the continuing pay gap 
between men and women. These tools permit employers to self-analyze 
through the use of techniques that take into account the relevant 
factors that impact the pay gap.
    Question. Finally why do you feel the Equal Pay Act should be 
amended to include unlimited punitive and compensatory damages, unlike 
other wage discrimination cases which have limits?
    Answer. As you know, the EEOC, and not DOL, is charged with 
enforcing the Equal Pay Act. Amending the Equal Pay Act, however, could 
permit the award to full relief, including compensatory and punitive 
damages, to victims of pay discrimination. Capping compensatory and 
punitive damages could limit a court's ability to compensate completely 
a claimant for her losses. It is true that compensatory and punitive 
damages available under Title VII are capped, but that cap is the 
result of a legislative compromise and is limited to Title VII. In 
fact, uncapped compensatory and punitive damages are available under at 
least the 1866 Civil Rights Act (42 U.S.C. 1981), Title IX of the 
Education Amendments, and Section 504 of the Rehabilitation Act.
                  questions regarding gpra compliance
    Question. What specific steps have you taken as the head of the 
agency to achieve performance-based management within your agency, as 
required by the Government Performance and Results Act?
    Answer. The Department recently prepared a revised DOL Strategic 
Plan and its second Annual Performance Plan covering fiscal year 2000. 
These plans, and the management structure that will guide their 
implementation focus on performance-based management, offer a framework 
for managing our programs as an integrated Department, and provide a 
basis for reporting our program results to our stakeholders, our 
customers, and the American public. The process of developing these 
plans and using them as a basis for managing our programs reflect a 
number of specific steps, that the Secretary has taken to make DOL a 
performance-based, results-oriented Department.
  --Each annual planning and budget cycle begins with a Senior 
        Management Retreat to emphasize that we are doing business a 
        different way--focusing our efforts on outcomes, program 
        integration (where this makes sense), and cross-cutting 
        activities. At these sessions, the DOL Strategic Plan is 
        reviewed, the Secretary's program priorities are conveyed to 
        Departmental leadership, and key program goals projected for 
        the budget year.
  --A Departmental Strategic and Performance Planning Work Group 
        (SPPWG), comprised of selected senior staff from each DOL 
        Agency, has been established by the Secretary to develop the 
        Department's Strategic and Annual Performance Plans.
  --A Management Review Council, comprised of DOL Agency Heads, has 
        been established by the Secretary to coordinate the 
        implementation of major management issues as a single, unified 
        Department of Labor; oversee the strategic and performance 
        planning and budget formulation processes; and to ensure that 
        the goals we have established in our planning documents are 
        regularly reviewed and actively used to manage DOL programs.
  --Considering the results of our fiscal year 2000 planning cycle, we 
        have gained good experience in identifying strategic issues, 
        forecasting trends, and consulting with our customers and 
        stakeholders. During the fiscal year 2001 planning cycle, we 
        expect to build on this experience and make further refinements 
        in our assessment of cross-cutting programs and activities, our 
        range of consultation with stakeholders and customers, and the 
        relationship between the strategic issues we identify and the 
        goals we establish for fiscal year 1999-2004.
  --Beginning this fiscal year, the Management Review Council is using 
        the plans to manage our programs and assess progress toward 
        achievement of the goals in the fiscal year 1999 DOL Annual 
        Performance Plan. During the program review process, 
        performance goals are reviewed in terms of their meaningfulness 
        in assessing the key objectives of the program. Those goals 
        which are inadequate by this standard will be replaced. Our aim 
        is to have clear measures of performance that are readily 
        understood by our employees, stakeholders, customers and the 
        American public.
  --Finally, we need to maintain a performance dialogue with our 
        stakeholders and customers and convey the results of our 
        programs to them. We have shared our program goals with them 
        through consultation on our plans. At the conclusion of the 
        fiscal year, we will appraise them of our efforts against these 
        plans through Annual Program Performance Reports.
    Question. How are your agency's senior executives and other key 
managers being held accountable for achieving results?
    Answer. At regular quarterly performance reviews conducted by the 
Management Review Council and chaired by the Deputy Secretary, each 
Agency Head reports on the progress of their programs in terms of the 
goals set for these programs in the Department's Annual Performance 
Plan. As part of the review process, written progress reports are 
provided by the Agency Head to the Departmental staff for review and 
comment. Both the staff assessment of program results and the Agency 
Head's presentation provide a basis for the Deputy Secretary to monitor 
the progress of the Department's programs against established goals and 
to hold key executives responsible for results.
    Question. How is your agency using performance information to 
manage the agency?
    Answer. Beginning this fiscal year, Departmental agencies began 
using the Annual Performance Plans to manage our programs and assess 
progress toward achievement of the goals we have established in the 
prior Annual Performance Plan. At the Departmental level, the 
Department's Management Council is conducting assessments through 
regular performance reviews. During these program reviews, performance 
goals are assessed in terms of their meaningfulness in assessing key 
program objectives. Those goals which are inadequate will be replaced. 
Our aim is to have clear measures of performance that are readily 
understood by our stakeholders, employees, customers and the American 
public.
    BLS, as a component agency, uses performance data to manage its 
agency and to conduct periodic reviews. We also are working to use as 
many outcome and impact performance goals as possible.
    Question. How did program performance factor into your decisions 
about the funding you are requesting in fiscal year 2000? Please 
provide examples.
    Answer. Internal guidance to agencies in the budget formulation 
process required that requests for new budget initiatives be related to 
Departmental strategic goals and include a discussion of expected 
outcomes with proposed measures and projected cost.
    The following are increases for additional measurable performance 
in fiscal year 2000.
  --For the Bureau of Labor Statistics (BLS), $22 million and 101 FTE 
        are included to improve statistical indicators which are 
        essential to the development of economic policy and the ability 
        of businesses, labor and governments to make well informed 
        decisions. Of this total, $6.3 million and 57 FTE will be used 
        to augment the Employment Cost Index (ECI) sample with an 
        addition of 7,000 establishment units to the ECI Sample. The 
        ECI is the Principal Federal Economic Indicator that provides 
        the nation's most comprehensive measure of changes in employer 
        costs for all compensation (including wages, salaries and 
        employer provided benefits).
      To expand the application of quality adjustment and accelerate 
        the introduction of new products for rapidly changing 
        industries in the Producer price index (PPI), extend PPI 
        coverage for the first time in the construction sector of the 
        economy, and to enhance the ongoing expansion of PPI coverage 
        of the service sector, the budget includes $3.9 million and 28 
        FTE.
  --For the Employment and Training Administration (ETA), the Workforce 
        Investment Act (WIA)'s Dislocated Worker Employment and 
        Training Activities will provide special, targeted assistance 
        training and employment services to about 840,000 displaced 
        workers in 2000. The budget proposes $1.6 billion for 
        dislocated workers, an increase of $190 million over 1999. In 
        2000, about 74 percent of those who receive services will be 
        working three months after leaving the program, earning an 
        average hourly wage that represents 93 percent of the wage in 
        their previous job.
    Question. What specific program changes have you made to improve 
performance and achieve the goals established in your strategic and 
annual plans?
    Answer. Fiscal year 1999 is the first year that DOL and its 
component Agencies are using GPRA goals as a basis for assessing 
program performance. Management actions to improve performance will 
flow from an assessment of performance data that is being reported 
against these measures during fiscal year 1999, as well as from the 
results of discrete evaluations that will be conducted in specific 
programs.
    Question. How does your budget structure link resource amounts to 
performance goals?
    Answer. DOL's work is organized around three strategic goals which 
are outlined in the fiscal year 2000 Performance Plan. These goals 
bridge the Department's many agencies and programs, linking them to the 
DOL mission. For each of the three strategic goals there are 11 
supporting outcome goals that refine and further focus the strategic 
goals.
    Currently, linkage to the budget is provided in the DOL Annual 
Performance Plan by cross referencing DOL budget activities to the 
Department's three strategic goals. Our objective with the fiscal year 
2001 budget is to further refine this linkage to align funding with the 
Department's 11 outcome goals.
    For each DOL outcome goal, there are supporting performance goals 
that set specific and measurable target levels of performance for DOL 
Agency programs for the fiscal year. While the current budget structure 
aligns closely with our performance plan goals in many program areas, 
some budget program activities may be restructured to achieve the 
necessary alignment of programs.
    In terms of further refinements to the budget which would tie 
funding to performance goals, the Department is not yet in a position 
to pursue that linkage. Our current efforts are focused on assuring the 
Department's Annual Performance Plan has a well defined program 
structure, supported by performance goals that capture the core purpose 
of each program or activity. Once this is accomplished, we will then 
address appropriate budget restructuring where needed.
    Question. What, if any, changes to the account and activity 
structure in your budget justification are needed to improve this 
linkage?
    Answer. We are examining our budget account structure, but are not 
yet in a position to discuss what changes, if any, will help us provide 
Congress with a clearer picture of DOL programs and activities that 
facilitate rational decisions on the allocation of resources and paint 
a clearer picture of the cost of results. Our new process could reduce 
the number of accounts and budget activities to provide more 
flexibility within DOL agencies for utilizing available funds.
    Any changes would improve the connection between DOL programs and 
the resources needed to carry them out, and would allow us to 
demonstrate the real cost of the results we are delivering for our 
budget dollars. In these periods of tight budget constraints, the 
Department believes this to be a key element of the GPRA reporting 
requirement.
    Question. Does your fiscal year 2000 Results Act performance plan 
include performance measures for which reliable data are not likely to 
be available in time for your first performance report in March 2000? 
If so, what steps are you planning to improve the reliability of these 
measures?
    Answer. Given DOL projections for the implementation and refinement 
of data collection and reporting systems, we expect to report some data 
which is reliable in the first DOL Annual Program Performance Report as 
we continue to address and rectify various data shortcomings. A key 
exception, from a timeliness perspective, is the data reported under 
the Job Training Partnership Act (JTPA) and the Workforce Investment 
Act (WIA).
  --The JTPA and WIA Program Year (PY) corresponding to fiscal year 
        1999 is July 1, 1999 to June 30, 2000. (The nine month delay 
        from fiscal year to the start of the JTPA program year permits 
        sufficient time to allocate funds in these programs to the 
        states and local jurisdictions.) While having the resources in 
        place at the beginning of the program year offers start-up 
        advantages, end-of-program-year performance data is not 
        available until it is gathered from the states some six months 
        after the end of the program year and 15 months after the 
        corresponding fiscal year has ended. Thus, for the DOL Annual 
        Performance Report for fiscal year 1999, DOL will not have 
        reliable JTPA and WIA data that reflects PY 1999 performance 
        until December of fiscal year 2000.
  --In response to the second part of your question, eighty-five; the 
        issue for DOL is not reliability of data, but the timeliness of 
        reporting that must be improved. Lagtime of performance data 
        for all forward-funded programs will continue to be an 
        obstacle.
    Question. How will your future funding requests take into 
consideration actual performance compared to expected or target 
performance?
    Answer. The Department's budget submission is a product of a new 
and rigorous process, driven by an unusually high level of interagency 
cooperation throughout the Department which takes into consideration 
actual performance compared to expected or target performance. 
Therefore, the budget includes funding for three management crosscuts 
that are vital to the successful design, development, and operation of 
all departmental programs to enhance the Department's efforts in the 
areas of performance measurement, information technology, and financial 
management. The Department is undertaking initiatives on behalf of 
several agencies to enable them to increase their capacity to become 
results-oriented, performance-based organizations. These funding 
requests will help several agencies develop better performance 
measures; expand data capacity to establish baselines and collect data 
for the measurement of outcomes; and establish procedures for assuring 
the validity and reliability of data systems to support performance 
measurement. The Department is very committed to working both 
internally with the Office of Inspector General and externally with 
GAO, OMB, and Congress, as well as other agencies, to ensure that we 
accomplish our intended results. To do so, the Department will conduct 
program evaluations to periodically assess the effectiveness of Labor's 
programs and activities.
    Question. To what extent do the dollars associated with specific 
agency performance goals reflect the full costs of all associated 
activities performed in support of that goal? For example, are overhead 
costs fully allocated to goals?
    Answer. The Department maintains cost information for the 11 
outcome goals in the Department's Strategic Plan. The Chief Financial 
Officer cost accounting applications will extend beyond the outcome 
goal level to developing fiscal year 2000 cost information in support 
of the performance goals set forth in the Department's Performance 
Plan. The Department has modified its automated financial system to 
reflect the costs of associated activities performed in support of 
DOL's performance goals by having the capability to capture, aggregate, 
allocate and report costs. The new cost accounting systems have the 
capability to allow aggregation of costs across agency lines and to 
allocate direct and indirect costs to the strategic outcome and 
performance goal levels established in the DOL Strategic Plan.
    Question. How were the agency's performance goals and measures 
developed? How did the agency balance the need to develop attainable 
measures with the goal of improving agency performance by setting 
challenging performance goals? Did the agency assess goals and measures 
for their potential for unintended perverse effects?
    Answer. The Department has utilized a top-down and bottom-up 
approach in the development of its performance goals and measures. 
Specifically, Secretary Herman held retreats during the first phase of 
the planning cycle with her executive staff to review departmental 
issues and experiences from the prior year and to identify and explain 
her priorities for the coming year. Following a review of the DOL 
Strategic Plan, the new priorities were incorporated into the 
development of new performance goals and measures.
  --The Secretary also created a departmental-level GPRA staff to 
        provide guidance on the DOL's strategic planning processes. The 
        Strategic and Performance Planning Work Group (SPPWG), 
        comprised of selected senior staff from each DOL Agency was 
        responsible for reviewing the goals and measures developed by 
        the component agencies and for the development of the 
        Department's strategic and Annual Performance Plans. During the 
        planning process, SPPWG relied heavily on component agency 
        program information to ensure that they designed challenging 
        performance goals and attainable measures. The Strategic 
        Planning and Performance Workgroup also examined the goals and 
        measures established by the various agencies to determine which 
        ones would be included in the Department's plans.
  --The Department attempted to assess its goals and measures in the 
        context of meeting emerging challenges. In the development of 
        the Strategic Plan the Department fully assessed key external 
        factors that may affect performance: the dynamic changes 
        affecting the future workforce and workplace, namely the 
        changing economy; changes in legislation and regulations; and 
        partnerships.
  --In assessing its goals when conducting field inspections, OSHA 
        changed its methodology from one of enforcement to providing 
        compliance assistance. For example, GAO highlighted this in a 
        staff paper on GAO ``Best Practice'' Study on Performance 
        Management and Measurement, Job Code 233584, dated April 30, 
        1999, stating: ``OSHA found that the decline in occupational 
        injury and illness rates in the early to mid-1990s was 
        attributable to legislative reforms motivated by increases in 
        workers' compensation payments and a growing awareness of 
        workplace hazards among unions, employers, and the insurance 
        industry. Factors such as employment shifts into low hazard 
        industries and under reporting of injury and illness rates were 
        not contributory. OSHA reform efforts affected the agency's 
        inspection strategy and resulted in a renewed emphasis on 
        outreach, partnering, and working cooperatively with employers 
        to address workplace hazards. The change in approach 
        complemented market influences affecting industry, namely, 
        escalating costs for workers' compensation programs and the 
        dawning realization that corrective action was needed to reduce 
        workplace accidents. The OSHA reforms reinforced and supported 
        industry initiatives and contributed to the decline in 
        occupational injury and illness rates.''
    Question. Has the agency consulted or coordinated development of 
its performance plan with any other agency that administers similar 
programs or provides services to similar customer groups? If so, which 
agencies/programs were involved? If no, why not? Based on these 
consultations, what, if any, substantive changes were made to the 
agency's strategic objectives or performance goals and measures.
    Answer. During the planning cycle, briefings for Executive Staff 
were held to better coordinate plans among Departmental Agencies. DOL 
has conducted consultations with many customers and stakeholders. The 
consultation process with other Federal agencies is ongoing. There has 
been some consultation with other agencies on cross-cutting issues, 
particularly between the Employment Training Administration and the 
Department of Education; between the Occupational Safety and Health 
Administration and the National Institute for Occupational Safety and 
Health; and between PWBA and the ERISA Advisory Council and other 
Federal agencies which share ERISA responsibilities.
    DOL's consultation efforts with other agencies, including GAO, OMB, 
Department of Transportation and Coast Guard, led to several changes, 
clarifications, and improvements in the text of the Departmental plans.
    Question. What part of the agency is responsible for overseeing 
implementation of the GPRA? If it is not the budget office, how does 
the responsible component of the agency coordinate its oversight 
activities with the budget office?
    Answer. The Office of the Assistant Secretary for Administration 
and Management, Office of Budget, which houses the GPRA Staff, has the 
staff responsibility for overseeing the implementation of GPRA and 
providing guidance on strategic planning and performance management 
processes for SPPWG and the Management Review Council.
  --The Departmental Office of Inspector General also provides input in 
        the GPRA implementation process by providing the Secretary with 
        information on how best to attain the highest possible program 
        results.
  --The Chief Financial Officer provides a partnership role in 
        quarterly performance reviews and annual reports in addition to 
        cost accounting responsibilities. Currently, the CFO is 
        developing ways to provide good cost accounting information for 
        the outcome goals in the Department's Strategic Plan. Further, 
        the Department is also developing cost information in support 
        of the performance goals in the Performance Plan. DOL is 
        developing the capability to consolidate data from a variety of 
        program and financial system sources and link that data as 
        needed to meet GPRA performance reporting requirements.
    Question. Labor lacks adequate information to assess whether its 
programs are operating efficiently and are producing intended results. 
Labor's fiscal year 2000 performance plan acknowledges some missing 
data. Also, GAO has reported on data problems regarding the Job Corps 
program and the Davis Bacon Act. What has Labor done to ensure that 
data sources (particularly the Standardized Program Information report 
used by the Job Training Partnership Act program and the Outcome 
Management System used by Job Corps) are complete, precise, timely, and 
reliable?
    Answer. The Department is taking several aggressive steps to 
overcome management challenges and to address the areas where 
improvements are needed. First, to assist us in developing solutions to 
our data problems, we are currently launching an effort to obtain 
technical assistance to improve our performance data systems, in 
addition to other component agency-specific improvement initiatives. 
This technical expertise will assist selected program staff in 
developing outcome measures and training modules that can be utilized 
Department-wide. We will also use this resource to begin to address 
specific agencies and problem areas that have been identified in 
previous GAO reports. OSHA has already begun conducting record keeping 
inspections to verify site specific data gathered through its data 
initiative in response to a GAO recommendation. The Employment Training 
Administration has launched a major data initiative using contractor 
support to review its data reporting systems and to develop specific 
recommendations for improving accuracy, reliability and timeliness. Our 
aim is to ensure that our systems produce accurate, reliable program 
performance data.
    To ensure that data sources are reliable, ETA has launched a major 
data validation project employing an independent research firm, 
Mathematic Policy Research, Incorporated to study the agency's data 
reporting systems and to develop specific recommendations to ensure 
that data collected and reported is accurate, reliable and timely. This 
ETA Data Validation and Quality Initiative is the first step in the 
design of a comprehensive ETA Data Validation System. This data 
validation concept is being embedded in the new reporting systems under 
development as a result of implementation of the Workforce Investment 
Act (WIA). The contractor will be reporting its recommendations for 
designing the Data Validation System in early June, and work on the 
validation system will start immediately thereafter.
    With respect to concerns regarding the accuracy of Job Corps data, 
Job Corps has made several programmatic and policy changes to address 
the concerns raised by the GAO. Effective July 1, 1998, Job Corps 
implemented a placement retention measure in its comprehensive Outcome 
Measurement System. The data collection for both the placement 
retention measure and the initial placement verification is being 
conducted by a neutral third party to ensure data integrity. Data 
integrity and reliability are high priority issues within Job Corps. 
The Office of Job Corps is working closely with the Office of Inspector 
General to address these areas.
    Question. What performance goals has Labor developed to measure the 
timeliness and accuracy of its wage data collections, how will they 
help assess improvement in wage data collection, and what process and 
criteria did you use in developing them?
    Answer. The long-term performance goals that have been established 
under GPRA for the Davis-Bacon wage survey/determination program are 
to:
  --Survey each area of the country for all four types of construction 
        (residential, building, highway, and heavy) at least every 
        three years, and the resulting wage determinations validly 
        represent locally prevailing wages/benefits; and,
  --Update 90 percent of Davis-Bacon wage determinations within 60 days 
        of receipt of the underlying survey data.
    The Department of Labor is currently developing two possible 
alternatives for accomplishing these goals: (1) the Wage and Hour 
Division is working closely with the Bureau of Labor Statistics (BLS) 
to explore the use of new or redesigned BLS survey programs as the 
underlying basis for Davis-Bacon wage determinations, and (2) Wage and 
Hour is re-engineering the current survey process through the 
application of new technology and other process improvements. After a 
review of a broad range of alternative approaches, the BLS and re-
engineering alternatives were selected as the two approaches warranting 
further development due to their potential for improving the accuracy 
and timeliness of wage determinations.
    These performance goals focus specifically on timeliness and 
accuracy. Wage determinations based on old data or erroneous data will 
not validly reflect locally-prevailing wage and fringe benefit rates. A 
timely wage determination is not acceptable unless it also accurately 
and appropriately represents locally prevailing wages and benefits.
    For example, the use of OES data may not yield sufficient 
information to issue accurate rates for the different types of 
construction. OES may provide data for electricians in the construction 
industry as a whole in an area, but not for electricians in building, 
residential, heavy and highway construction, respectively. Clearly, a 
wage determination based upon data for the construction industry as a 
whole would be less accurate than a wage determination reflecting 
different types of construction. However, there may be other timeliness 
and accuracy considerations such as the frequency of data collection 
and the quality of the data collected that would compensate for using 
broader occupational data. Similarly, the sample survey format utilized 
by OES may not produce adequate data to issue wage determinations on a 
county-by-county basis.
    At the present time, sufficient data are not available to conclude 
that both options are, in fact, feasible--either operationally or from 
a cost perspective. Once we can ascertain whether both options are 
feasible, we will undertake to assess the relative merits based on the 
achievability of our established performance criteria of accuracy and 
timeliness as well as administrability, continuity and--certainly--
cost. However, we must first cross the threshold of establishing that 
both approaches, or some combination of the two, provide a feasible 
basis for meeting the needs of the Davis-Bacon wage determination 
program.
    Question. Labor's decentralized agency structure challenges the 
Department's ability to coordinate its activities. This is particularly 
true in light of the many offices at the federal, state, and local 
levels that share responsibility for implementing worker protection 
laws and workforce development programs. For example, GAO reported in 
1998 that lack of effective coordination could result in farm worker 
children working in violation of federal law. Recent passage of the 
Workforce Investment Act further emphasizes the need for effective 
coordination to determine whether the agencies' strategic goals are 
being met.
    In light of the passage of the Workforce Investment Act and Labor's 
highly decentralized structure, how will the Department ensure that 
effective coordination will occur among its responsible agencies as 
well as the various federal, state, and local units involved in 
implementing workforce development programs?
    Answer. A variety of approaches has been used to achieve the 
coordination that is necessary to effectively implement the Workforce 
Investment Act (WIA). At the Federal level, coordination within Federal 
Departments and agencies has been achieved through interagency working 
groups that address such issues as regulations, performance 
accountability, unified planning, and promoting maximum program 
participation in, and customer access to the One-Stop delivery system. 
OMB and NPR usually are involved in such working groups and often are 
their conveners. Within the Department of Labor, a variety of 
interagency teams and task forces have been used to achieve 
coordination and develop products, such as the Interim Final Rule and 
the State Planning Guidance. The Employment and Training Administration 
is required by Section 506 (e) of the WIA to reorganize and align 
functions to carry out the duties and responsibilities required by the 
Act. ETA is currently developing plans for such a reorganization, which 
should facilitate coordination of programs and activities under WIA.
    Similarly, a variety of approaches has been used to coordinate with 
State and local partners in implementing WIA. First, using authority 
under the Intergovernmental Personnel Act, State and local staff have 
been brought in to work on the WIA Implementation Task Force. Second, 
State and local personnel have served on panels to raise and discuss 
key issues during regulations development. Third, the Department has 
held regular meetings with representatives of intergovernmental 
organizations (such as the National Association of Counties and the 
National Governors Association) on various aspects of implementation. 
Fourth, the Department has held training sessions on the Interim Final 
Rule at various locations around the country, at which there was wide 
participation among the One-Stop partners, including State and local 
partners. A final means of communication and coordination with States 
and localities is through our website.
    On the issue of interagency cooperation, DOL has established closer 
working relationships with the Departments of Education, Housing and 
Urban Development, and Health and Human Services as part of effective 
implementation of the Workforce Investment Act. The new legislation 
drives closer partnership among the federal agencies in designing and 
implementing the performance management systems, including provisions 
for incentives and sanctions, customer satisfaction, and continuous 
improvement. Closer integration among programs will improve performance 
by enabling more effective alignment of resources on the goal of 
enhancing outcomes for customers.
    Question. What initiatives does Labor currently have underway to 
protect farm workers and their children in the fields?
    Answer. Consistent with Secretary Herman's strategic goal to assure 
a secure workforce: promote the economic security of workers and 
families, the Employment Standards Administration's Wage and Hour 
Division has established a supporting goal to increase compliance in 
targeted low-wage industries, including agriculture. Wage and Hour is 
placing a particular emphasis on the safe and legal employment of 
children in agriculture (and other low-wage industries through its 
multi-prong strategy of enforcement, education and partnerships.
    Wage and Hour is expanding its focus on protecting farm workers and 
their children through its ``Salad Bowl'' initiative in which tomato, 
cucumber, onion, garlic, and lettuce crops are targeted under the 
multi-prong strategy and national compliance surveys are being 
conducted to measure current levels of compliance and establish the 
baseline for improving compliance.
    The ``hot goods'' provision of the Fair Labor Standards Act (which 
prevents the shipment in interstate commerce of goods produced in 
violation) is an effective enforcement tool to remedy and deter 
violations.
    Aggressive education and outreach to all of these sectors help 
ensure that workers know their rights and employers are aware of their 
obligations. This summer, the Department will be renewing its Fair 
Harvest/Safe Harvest educational campaign focused particularly to farm 
workers and their families.
    Partnerships with leaders in the industry, States, and other 
Federal agencies augment Wage and Hour's enforcement and education 
efforts and leverage limited resources.
    To assist in efforts to increasing compliance in agriculture, and 
especially the safe and legal employment of minors, the President 
sought and the Congress authorized an additional 36 investigators in 
fiscal year 1999 for the Wage and Hour Division. These resources are 
being hired, trained and deployed to areas where needed to enhance our 
agricultural compliance programs.
    OSHA is limited by a rider on its appropriation bill as to which 
employers it can inspect. Generally OSHA cannot inspect farms which 
have 10 or fewer employees and have not had an active temporary labor 
camp activity within the preceding12 months. Family members are not 
considered employees in these cases. In addition, since February 1997, 
Wage and Hour has taken over enforcement of 1910.142 (temporary labor 
camps) and 1928.110 (field sanitation) standards, under Secretary's 
Order 6-96. Nine of OSHA's 23 States and territories that have OSHA 
approved plans also t/ransferred authority over to Wage and Hour. OSHA 
retains jurisdiction over temporary labor camps for egg, poultry, or 
red meat production workers and for post-harvest processing of other 
agriculture or horticultural commodities. OSHA also has enforcement 
authority in agriculture for other 29 CFR 1928 standards and certain 29 
CFR 1910 standards which are:
  --roll-over protective structures for tractors used in agricultural 
        operations (1928.51);
  --guarding of farm field equipment, farmstead equipment, and cotton 
        gins (1928.75);
  --storage and handling of anhydrous ammonia (1910.111 (a) and (b));
  --logging operations (1910.266);
  --slow moving vehicles (1910.145);
  --hazard communication (1910.1200);
  --cadmium (1910.1027);
  --retention of DOT markings, placards and labels (1910.1201);
  --Also, where appropriate, OSHA can issue a citation under its 
        General Duty Clause (Section 5(a)(1) of the OSH Act).
    For the reasons listed above, Federal OSHA's inspection activity, 
and that of nine of the 23 State OSHA Programs, is comparatively small 
because most enforcement has been taken over by the Wage and Hour 
Division. For fiscal year 1998 in the crops, livestock, and animal 
specialty industries, Federal OSHA conducted 52 inspections, and the 
State OSHAs conducted 862 inspections. In the agricultural production 
crop industry, Federal OSHA conducted 25 inspections, and the State 
OSHAs conducted 761 inspections.
    Question. How does Labor plan to measure the success of its 
coordination of enforcement resources both within the department (e.g. 
Occupational Safety and Health Administration [OSHA] and the Wage and 
Hour Division) and between different levels of government?
    Answer. Consistent with the Department's strategic and performance 
planning processes, the Department will measure the success of its 
coordination of enforcement resources both within the Department and 
between various levels of government, by gaining information and 
feedback on an ongoing basis from various agencies, state partners, non 
federal programs, among other stakeholders and by program evaluations.
    The Department has made significant improvements in communication 
and coordination among cross-cutting enforcement program activities 
such as those of the OSHA, and the Mine Safety and Health 
Administration. These improvements can be attributed to the 
participatory nature of the stakeholder involvement and the 
participatory nature of the Department's strategic planning process. We 
recognize that our agencies must work together in ways which increase 
the cross-fertilization of ideas, information and strategies in order 
to meet our overall mission.
    Question. What is the current status of OSHA's effort to promulgate 
a national employer work site safety and health program standard?
    Answer. OSHA is continuing it's efforts to develop a Safety and 
Health Program rule. Because the U.S. Court of Appeals' recent decision 
on OSHA's Cooperative Compliance Program has potential implications for 
the form a program rule will take, OSHA has decided to conduct 
additional research. We expect the additional research to be completed 
this year and anticipate publishing a proposal in the Federal Register 
by the end of this calendar year.
                       international child labor
    Question. Madam Secretary, I applaud your efforts in the ILO to 
help craft a meaningful and substantive Convention concerning the Worst 
Forms of Child Labor. For clarification, the ILO is a tripartite 
organization made up of Governments, employers and workers working 
together to come up with this new convention. I believe that it is 
important for the United States to ratify this new Convention and be on 
record as abhorring the scourge of child labor. Can you enlighten us as 
to the status of the negotiations between the three parties?
    Answer. As the President made clear in his State of the Union 
address, the United States should play a leading role in helping the 
international community to eliminate the worst forms of child labor. We 
very much appreciate your support of that role.
    At last year's ILO Conference, I emphasized the President's strong 
support for an effective new child labor convention. I urged the 
delegates to negotiate a convention that was clear, concise, and 
targeted to ending the worst abuses. We will continue to pursue that 
goal. Delegates to the ILO Conference will meet again on June 1-17, 
1999, to finish drafting the new convention. After a convention is 
adopted by the ILO, it will be up individual member countries to decide 
whether they will ratify the convention.
    Question. Can you tell the Committee for the record the 
significance of having all three parties in agreement?
    Answer. Finding common ground among governments, workers and 
employers will help produce a new convention that many countries can 
ratify and that truly will make a difference in protecting children.
                       child labor law violations
    Question. Madam Secretary in your opinion, in what U.S. industry do 
the most child labor violations occur?
    Answer. Not surprisingly, most violations of the Federal child 
labor law occur in the retail industry. Nearly 60 percent of 15- to 17-
year-olds are employed in retail industry--most in eating and drinking 
establishments. Correspondingly, its in the retail sector that we most 
often find child labor violations--nearly two-thirds of our cases 
finding violations are in retail and involve 70 percent of minors 
employed in violation. And it is in retail employment that most 
injuries to young workers occur--again, nearly 70 percent of youth who 
experience work-related injuries are employed in retail.
    Children who work in agricultural occupations (about 6 percent of 
15- to 17 year-olds) are however, among the most vulnerable workers. 
Agricultural employment accounts for the largest percentage (40 
percent) of fatalities to young workers 17 and under. In fiscal year 
1998, Wage and Hour conducted more than 540 targeted investigations in 
its ``Salad Bowl'' initiative and found 69 minors illegally employed in 
the ``salad bowl'' crops alone (lettuce, cucumbers, tomatoes, garlic 
and onions).
    Question. Madam Secretary, in fiscal year 1999 we provided 
additional resources to address violations of U.S. child labor laws 
particularly in the agricultural sector. How are or will these 
resources being used? Also can you give the Committee an overview of 
``Operation Salad Bowl'' and the ``No Sweat'' initiative with an 
emphasis on violations of child labor laws?
    Answer. The additional investigators sought and obtained in fiscal 
year 1999 have been hired, are being trained and will be deployed so as 
to allow Wage and Hour to enhance its compliance initiatives, which 
include a focus on child labor, in garment manufacturing (the ``No 
Sweat'' initiative) and agriculture (the ``Salad Bowl'' initiative). 
The additional staff, when fully trained and productive, will allow 
Wage and Hour to double its agricultural enforcement program.
    Our ``No Sweat'' garment initiative is a multi-prong strategy of 
enforcement, education and partnerships which seeks to involve all 
segments of the industry contractors, manufacturers, retailers, 
consumers, worker advocacy groups and unions in efforts to promote and 
achieve labor law compliance. Enforcement strategies typically include 
targeted strike forces and the use of the Fair Labor Standards Act's 
``hot goods'' provision. Education strategies, which include compliance 
monitoring workshops, are designed to educate all those involved in the 
industry and the public about the nature and extent of the labor 
standards violations and what can be done to remedy them. Partnerships 
with leaders in the industry, States and other Federal agencies, like 
Targeted Industries Partnership Program (TIPP) with the State of 
California, increases the effectiveness of our enforcement and outreach 
efforts and leverage valuable resources.
    The disregard of labor laws in the garment manufacturing industry 
is rampant and well documented by the Department's recent compliance 
surveys. For example, our 1998 survey of the Los Angeles garment 
industry found that compliance with minimum wage and overtime 
requirements at only 39 percent. The compliance rate in New York City, 
the second major garment center in the U.S., is only 37 percent (1997 
survey). Sweatshops are still very common, and our ``No Sweat'' 
strategy is aimed directly at this serious problem.
    Similar circumstances characterize agriculture, though compliance 
surveys are only now starting to be conducted in this sector. 
Agriculture is subject to very substantial workforce and employer 
instability, which makes it even more difficult to drive up compliance. 
However, we are committed to and continuing to expand our focus on farm 
workers through our ``Salad Bowl'' initiative in which tomato, 
cucumber, onion, garlic, and lettuce crops are targeted. ``Operation 
Salad Bowl'' uses the same multi-prong approach of enforcement, 
education, and partnerships to effect compliance. Child labor 
compliance is emphasized not just in the ``Salad Bowl'' initiative but 
also in other local education and enforcement initiatives directed to 
agricultural employment.
    Our increased emphasis on child labor compliance is broader than in 
garment manufacturing and agriculture, however. While substantial 
progress has been made in reducing work-related injuries to young 
workers the occupational injury rate has declined by half since 1992 
too many young workers are injured and killed on-the-job. Each year, 
more than 210,000 young workers suffer work-related injury and nearly 
70 are killed. This is unacceptable. And this is why I have established 
child labor as a high priority for the Department and why the President 
is seeking even more support an additional 30 investigators in his 
pending fiscal year 2000 budget, to further expand our capacity to 
address substantial compliance challenges, including child labor, in 
garment manufacturing and agriculture.
                                fair pay
    Question. Madam Secretary, I read in the New York Times this 
morning that M.I.T has issued a report acknowledging that they have a 
pay equity problem. They report that, although the number of women on 
their facility grew, the gap between salaries for male and female 
professors actually widened.
    I know that you have made enforcement of the Equal Pay Act a 
priority and I commend you for that. But there is more to this issue 
than just equal pay for the same job. I think part of the problem is 
that we're not paying women the same as men in when they are in 
different, but comparable, jobs. Do you have any thoughts about what we 
can do about this?
    Answer. First, we applaud MIT for taking the initiative to examine 
its own workforce and to address the pay problems that it found. The 
MIT experience confirms that the pay gap is real, even after 
controlling for factors that contribute to the gap. Self-audits can 
play a key role in closing the pay gap, and we at the Department of 
Labor want to offer any Federal contractor the technical assistance 
necessary to conduct its own self-audit.
    Although the EEOC now enforces the Equal Pay Act, I have made 
enforcement of Executive Order 11246 and the two statues relevant to 
the Federal contractor community a priority. These laws allow broader 
enforcement than is permitted under the Equal Pay Act, but do not 
directly address the condition you mention in your question, women 
being paid less than men when they are in different, but comparable 
jobs. Short of a change in the law, I believe there is much that can be 
done to narrow the pay gap. For example, we believe, that the 
activities that would be funded by our appropriation request, such as 
training, technical assistance, outreach, and encouraging the employer 
community to recognize and resolve pay disparities, are steps that will 
help to reduce the continuing pay gap between men and women and to open 
up jobs to women in non-traditional areas.
                            disabled workers
    Question. The Administration, I see, is making efforts to help 
adults with disabilities find meaningful employment that pays a living 
wage. Can you tell us, Madam Secretary, what these efforts are and what 
outcomes you hope to achieve?
    Answer. The President's fiscal year 2000 budget includes numerous 
initiatives that will help adults with disabilities find meaningful 
employment that pays a living wage. Since the start of his 
Administration, President Clinton has made an extraordinary commitment 
to making health care more affordable, accessible, and effective for 
all Americans. Furthermore, the President has recognized the critical 
link between health care and employment of adults with disabilities and 
that many persons with disabilities will choose not to return to work 
because of fears about losing their health insurance.
    Reflecting this commitment, I have headed for the past year the 
Presidential Task Force on Employment of Adults with Disabilities for 
the purpose of creating a coordinated and aggressive national policy to 
increase the employment of adults with disabilities. The focus of the 
Task Force, comprising senior executive branch officials, is to develop 
recommendations for revising Federal programs and policies in order to 
reduce employment barriers for adults with disabilities.
    The Task Force's work during its first year has been highly 
productive. All the recommendations from the Task Force have been 
adopted by the Administration and, as appropriate, included in the 
fiscal year 2000 budget. Within my Department the fiscal year 2000 
Budget includes $50 million for the new Work Incentives Assistance 
initiative. This program includes two different grant components--
Counseling and Outreach grants and Systems Change grants. The objective 
of both types of grants will be to ensure that persons with 
disabilities are provided the services needed to find and retain 
employment.
    Counseling and Outreach grants, accounting for $23 million of the 
$50 million request, will ensure that persons with disabilities have 
comprehensive information on existing work incentives programs. The 
complexities of work incentive programs often present a barrier to 
persons with disabilities returning to work, because of their concern 
about being unable to earn enough to offset losses in income and health 
insurance benefits.
    System Change grants, which account for the remaining $27 million, 
will focus on inducing systems change at the state and local level to 
improve training, employment, return-to-work, job retention, and career 
advancement for persons with disabilities. The current approach to 
supplying needed employment services to persons with disabilities is 
very fragmented and has rendered many of these programs ineffective for 
persons with disabilities. The Work Incentives Assistance Program would 
address these coordination and fragmentation problems by creating 
partnerships and consortia that would assist in better integrating and 
coordinating the provision of employment and support services to 
individuals with disabilities through the one-stop career center 
systems being established under the Workforce Investment Act of 1998 
(WIA).
    Even with the expansion of work incentive counseling and planning 
and more integrated and effective employment and training services, 
many persons with disabilities will choose not to return to work 
because of fears about losing their health insurance. Accordingly, 
these grant programs are intended to complement other provisions in the 
proposed Work Incentive Improvement Act, such as the Medicare and 
Medicaid options, which are aimed at reducing the costs of health 
insurance incurred by persons with disabilities returning to work.
                   reducing injury and illness rates
    Question. Madam Secretary, I am pleased to hear that since the 
passage of OSHA in 1970 the workplace injury rate for full-time workers 
has fallen by about a third--this is a significant success. Yet 
workplace injury rates are still high. What progress are we making to 
reduce these numbers?
    Answer. You are correct in saying that we have made a great deal of 
progress in reducing workplace injuries and illnesses, but that many 
challenges remain. Even with the decline in rates, there were more than 
six million workplace injuries and illnesses in our nation in 1997. 
More than 6,000 workers died from on-the-job injuries and many 
thousands more die each year as a result of chronic diseases related to 
occupational exposures. To make further progress in safeguarding our 
workforce, OSHA has adopted a fourfold approach: (1) OSHA will continue 
to form partnerships with workers, employers, insurance companies, 
trade associations and anyone else interested in improving workplace 
conditions; (2) OSHA will use strong enforcement to pursue employers 
who ignore the rules and endanger their employees; (3) The agency will 
improve its standards-setting process by developing smarter standards 
and using teams for each standards project; (4) OSHA will increase its 
outreach and educational efforts.
    The largest single program increase in our fiscal year 2000 budget 
request is for compliance assistance, to help businesses, particularly 
small business employers, identify and remove workplace hazards. Among 
the tools we use are consultation, expert advisors, and publications. 
Our request includes funds to place a compliance assistance specialist 
in each area office.
                            welfare to work
    Question. I support your efforts to extend the welfare-to-work 
program. The key to get people off welfare is to give them the skills 
they need to get good jobs. That's why I supported passage of the 
welfare-to-work program in 1997. However, I hear from people that the 
criteria in the statute, for who may be served, is too restrictive. Are 
you hearing this? How can we fix the problem?
    Answer. In creating WtW, Congress deliberately constructed the 
eligibility criteria to be narrowly defined so that at least 70 percent 
of WtW funds would reach the most difficult-to-serve TANF population. 
In addition to meeting a TANF receipt requirement, the 70 percent 
category recipients must meet two out of three specified barriers. 
However, for some of our most needy citizens, the eligibility criteria 
for the 70 percent category are too restrictive. For example, often 
individuals who hold high school diplomas do not qualify for services 
under the 70 percent category, even though they cannot read or write 
above an 8th grade level. To help address the problem, we have 
encouraged our grantees not to turn away persons ineligible under the 
70 percent category, but to serve them under the less restrictive 30 
percent category.
    In addition, under the WtW reauthorization sought by the 
Department, we are suggesting a modification to the eligibility 
criteria so that a TANF recipient must possess only one of the seven 
barriers to be served by WtW. The barriers are: (a) lacks a high school 
diploma or GED; (b) has low basic skills (reads or writes below the 8th 
grade level); (c) requires substance abuse treatment for employment; 
(d) is homeless; (e) has a poor work history; (f) has a disability; (g) 
is a victim of domestic violence. We believe that this change in the 
reauthorized WtW will result in a more successful program that benefits 
greater numbers of the neediest Americans.
                   definition of repeated violations
    Question. OSHA has changed its interpretation of its ``repeated 
violation'' rule. The result of the change is that if a company has 
many different locations, a violation of an OSHA standard at one 
location is predicate enough to constitute a repeated violation for 
breach of the same standard at any other location. The Seventh Circuit 
Court in Caterpillar, Inc. v. Secretary of Labor (Aug. 25, 1998, No. 
97-3488) urged OSHA to clarify its procedures under this rule. In fact, 
the judge noted in his decision that ``it would be nice if OSHA would 
make clear what it thinks a repeated violation is.'' Further, in its 
decision, the Court clearly outlines the conflicting interpre-tations 
of a repeated violation which have developed through case law, agency 
enforcement priorities, and OSHA's field operations manual and its 
progeny.
    There are two issues of paramount concern with regard to OSHA's 
interpretation of repeated violations. The first concern arises out of 
the confusion which has developed because of the varying 
interpretations of the term ``repeatedly'' and whether or not OSHA's 
apparent interpretation of that term is intended as a ``statutory'' 
interpretation or merely as a ``setting of enforcement priorities.'' 
The second issue of concern is the fact that, as noted by the judge, 
``the larger the company, the more likely is a violation to be 
repeated, even if the larger company is just as careful as the smaller 
one.''
    It is this second issue that is most troubling. Current OSHA 
interpretation of repeated violations unfairly discriminates against 
and penalizes employers who have multiple locations, and the Seventh 
Circuit Court clearly recognized this in its decision. The Court's 
decision in Caterpillar, Inc. solicits your assistance in clarifying 
this issue and removing the ambiguities that presently exist. What 
prompted OSHA to make such a big shift in policy on repeat violations?
    Answer. OSHA has not made a big shift in policy on repeat 
violations. The Occupational Safety and Health Act itself does not 
define the term ``repeatedly'' (which appears in section 17, the 
section on penalties), but the statute has long been interpreted -with 
the approval of all the courts that have addressed this issue--as 
meaning two or more substantially similar violations. As the 
Occupational Safety and Health Review Commission stated in its 1979 
Potlatch decision, neither the fact that ``the violations occurred at 
different worksites'' nor ``the length of time between the two 
violations'' is relevant to a determination of a violation as repeated. 
Rather, the Commission noted that such factors might be relevant to the 
assessment of an appropriate penalty.
    OSHA's field guidance manuals have also taken into account the 
location of, and length of time between, the two violations. In 
Caterpillar, the Seventh Circuit Court of Appeals raised the question 
of whether the manual instructions are intended as an interpretation of 
what a repeated violation is or as ``merely an intent to establish 
enforcement priorities.'' As previously noted, it is OSHA's 
interpretation that a repeated violation is simply one that is 
substantially similar to at least one prior violation by the same 
employer. The field guidance on time and geographic limitations is 
solely a matter of enforcement discretion.
    The agency, in other words, has chosen not to cite for repeated 
violations as fully as its interpretation of the term would allow. 
Thus, under OSHA's current enforcement policy, the agency looks at a 
company's nationwide history for only the last three years with respect 
to high gravity serious violations where there is a high probability of 
death or serious physical harm to an employee. In the agency's view, it 
is this type of violation that an employer, once cited, should be 
particularly diligent in eliminating at all of its facilities.
    Question. In light of the Court's August 25, 1998 decision, what 
changes has the agency made to clarify this issue?
    Answer. The Seventh Circuit expressed its concern that 
``substantial similarity'' must be defined in a manner that will 
``distinguish between repeated violations that reflect simply the scale 
of a company's operations and those that indicate a failure to learn 
from experience . . . the citation for the first violation [must] place 
the employer on notice of the need to take steps to prevent the second 
violation.'' OSHA is in full agreement with this principle and believes 
that both its enforcement guidance and the case law of the Review 
Commission and the courts have been consistent with it. Application of 
this principle assures fairness even to very large employers. In 
Caterpillar, for example, the court agreed with OSHA's determination 
that there was substantial similarity between the company's failure to 
provide a mechanical barrier guard on a power press to protect the 
operator's hands and the company's subsequent failure to assure such 
protection on another press by allowing an electric barrier (electric 
eye) to be disabled.
             health care--dol's patients' rights regulation
    Question. The Department of Labor is considering regulations to 
revise ERISA's benefit claims appeal procedures. DOL's stated intention 
is to improve the timeliness and fairness of claims procedure 
regulations. However, businesses--whether large or small--will be 
unable to comply with the new timetables under the regulations and will 
instead tend to approve all claims. The raging health care inflation 
that prevailed through the late 1980's and early 1990's will certainly 
return.
    DOL received more than 700 comments to their proposed regulation, 
131 from NAM members alone. Even organized labor (Bob Georgine) has 
indicated some discomfort over the proposed regulations. To their 
credit, DOL scheduled three days of public hearings (2/17-19) to 
receive further public comment. The NAM testified on 2/18 that the DOL 
should withdraw and re-propose their regulation or, better yet, set up 
a negotiated rulemaking procedure that will allow regulators and 
businesses to come to terms on new regulations with which the 
marketplace can live.
    Given the tremendous outpouring of negative comment on DOL's 
proposed benefit claims regulations, will you consider withdrawing the 
regulations?
    Answer. While we agree that numerous concerns have been expressed 
regarding various provisions of the Department's patients' rights 
proposal, we believe that the process that we have been pursuing to 
update the procedural standards governing benefit determinations under 
ERISA has been both constructive and informative. This process will, we 
believe, lead to an appropriate and beneficial regulation. We began the 
process in September 1997 with an invitation for public comment on 
whether and to what extent ERISA's claims procedures should be updated 
and amended. We received over 90 comments in response to that 
invitation, many of which identified specific areas in need of change.
    The need for changes in the claims processing area was further 
evidenced by the recommendations of the President's Advisory Commission 
on Consumer Protection and Quality in the Health Care Industry, as well 
as the changes taking place at the both the Federal and state level in 
response to a wide variety of problems in the health care delivery 
area. In addition to reviewing the more than 700 comments and the 
testimony presented on behalf of over 70 organizations, we are 
continuing to work with interested persons in an effort to ensure that 
our decisions with respect to a final regulation are made on a fully 
informed basis. We remain committed to working with all interested 
parties to improve patients' rights in this area.
    We also should point out that many of the comments we received were 
very positive and supportive of the principles underlying the proposed 
regulation. We are reviewing these comments, along with those that 
expressed concerns, in order to craft the final regulation. We expect 
that the final regulation will benefit from this process.
    Question. Many agencies (including the DOL in at least one case) 
are utilizing negotiated rulemaking procedures to create a less 
adversarial approach to rulemaking. Would you consider withdrawing the 
benefit claims regulations in favor of a negotiated rulemaking 
procedure?
    Answer. We recognize that numerous concerns have been expressed 
regarding various provisions of the Department's patients' rights 
proposal. We also have received many favorable and supportive comments. 
We believe, by carefully reviewing all comments, that the process that 
we are pursuing to update the procedural standards governing benefit 
determinations under ERISA will produce an appropriate and beneficial 
regulation. In addition to reviewing the more than 700 comments and the 
testimony presented on behalf of over 70 organizations, we are 
continuing to work with interested persons in an effort to ensure that 
our decisions with respect to a final regulation are made on a fully 
informed basis. We are committed to working with all interested parties 
to improve patients' rights in this area.
    Question. The 106th Congress is likely to work on managed care 
legislation. Given the likelihood of congressional action, would you 
consider withdrawing or placing these regulations on hold until 
Congress has had time to fully debate these same issues?
    Answer. As representatives of the Administration have testified 
before both House and Senate committees, we believe that there is a 
need for strong and enforceable Patients' Bill of Rights legislation. 
The Administration supports Congress's efforts to enact such 
legislation and will continue to work actively with the Congress to 
assist in developing that legislation. We also believe it is 
appropriate for the Department to continue its consideration of 
regulatory issues attendant to strengthening patients' rights while 
Congress works to consider legislative approaches to ensuring American 
workers and their families are provided the protections they both need 
and deserve. As we move forward, we welcome the opportunity to discuss 
our progress with you.
             administrative costs--workforce investment act
    Question. Under the old Job Training Partnership Act private 
industry councils were able to charge between 15 percent and 20 percent 
of their budgets to administrative costs. The new Workforce Investment 
Act allows these regional boards to have only 10 percent of their 
budgets listed as administrative. While I am certainly not advocating 
excessive administrative costs, many in the State of Wisconsin are 
concerned that they will have to cut their administrative budgets in 
half. This is especially troubling in light of the way the Department 
of Labor defines what an administrative cost is versus a direct cost. 
For example, the cost of issuing a check to a participant for tuition 
reimbursement may be considered an administrative cost even though it 
directly benefits the participant. There is also concern that computer 
repair costs on training work stations will also be considered 
administrative.
    Wouldn't it make sense for the Department of Labor to allow private 
industry councils and workforce investment boards to charge expenses 
that directly benefit participants as direct costs and not as 
administrative?
    Answer. Section 128(b)(4)(C) of the Workforce Investment Act (WIA) 
required the Department of Labor to develop and issue a regulation to 
define the term ``administrative costs'' after consultation with the 
Governors. The Department expanded the scope of the consultation 
process to include representation from many of the intergovernmental 
organizations and a number of other stakeholders. The Act also required 
that the definition be consistent with generally accepted accounting 
principles.
    In developing the definition of administrative costs, the 
Department considered the Office of Management and Budget circulars 
which address cost principles as well as the definition of 
administration included at Section 6 of the Rehabilitation Act of 1973 
as amended by Title IV of the Workforce Investment Act. Additional 
program specific factors, including the 10 percent local level 
administrative cost limitation and the operation of the program through 
one-stop centers, were also considered.
    After considerable discussion, it was agreed that ``function'' 
would be the basis for determining whether a cost should be classified 
as administrative or programmatic. The WIA Interim Final Rule, 
published on April 15, 1999, incorporates this approach. This new way 
of thinking about administrative costs was presented at the recent WIA 
Implementation Training sessions. Those participating were given the 
opportunity to work with the definition through the use of a practical 
exercise and many thought that the change would make it possible to 
operate the program within the administrative cost limitation imposed 
by the Act.
    However, the definition has not yet been tested. In order to do so, 
the Department is arranging for a CPA contractor to review the actual 
Job Training Partnership Act costs incurred by ten volunteer local 
areas during the program year July 1, 1997 through June 30, 1998, and 
reclassify the costs as programmatic or administrative based on the new 
WIA definition. The results of this test should give us a fuller 
picture by the end August. In addition, we will consider all comments 
received on the WIA Interim Final Rules approach to defining 
administrative costs prior to promulgating a final rule.
                               job corps
    Question. First, I would like to point out that Wisconsin has the 
lowest percentage of youth in poverty served by Job Corps than any 
other State. Only 3 percent of our disadvantaged young people have an 
opportunity to participate in the Job Corps program. In 1993, Milwaukee 
narrowly missed an opportunity to receive a Job Corps site, and 
recently I have been hearing from folks in that community who are 
interested in trying again. I hope that Congress and the Administration 
will be able to find the funds for another round of expansion for Job 
Corps soon, if not this year then maybe next year.
    But I know that Job Corps has pressing problems. The Workforce 
Investment Act (WIA) gives Job Corps may new responsibilities, but the 
Administration has not given them any new funds. Under the WIA, Job 
Corps will now be required to provide support services to, and track, 
students for twelve months after they leave a Job Corps program. I 
understand that the President's budget includes only half of the funds 
needed to carry out this new responsibility.
    Could you elaborate on why the twelve month follow-up is an 
important new part of the Job Corps program, and explain why only 
limited funds were provided?
    Answer. The President's Budget includes an increase of $12.6 
million to completely finance the enhanced post graduation support 
services and tracking required by the WIA. The requested amount will 
cover the costs of post graduation services and tracking for all 
graduates--providing the extended, enhanced assistance to Job Corps 
graduates envisioned by WIA as well as informing us about the 
employment patterns of Job Corps students for twelve months after 
graduation. The requested level is based on an analysis of PY 1998 unit 
costs for various types of placement services and tracking activities 
and an estimate of the number of students who will seek repeated 
placement services in the twelve months following graduation. Without 
prior experience providing post graduation services for a twelve month 
period, we extrapolated from our experience providing support services 
for six months after graduation and estimated the number of students 
who would require additional services in the second half of the year 
after graduation. It is our expectation that, consistent with the 
requirements of the WIA, the requested level will provide these 
essential services to all Job Corps graduates and will lead to 
substantial improvements in the overall effectiveness of the Job Corps 
program.
              senior community service employment program
    Question. The Senior Community Service Employment Program serves a 
crucial need in our communities. Under the new Workforce Investment Act 
this will be the only program geared toward older workers. It has a 
proven track record of success. With the workforce so tight in many 
places around the country, I believe we need to help everyone who wants 
to enter, or re-enter the workforce. Unfortunately, even though the 
numbers of older Americans are increasing, the funding for this program 
has remained constant for three years.
    Why has this program not been more of a priority for the 
Administration?
    Answer. We think the Senior Community Service Employment Program 
(SCSEP) is an important program. In March, the Departments of Labor and 
HHS transmitted amendments to the Older Americans Act which would 
reauthorize and strengthen Title V, which authorizes the SCSEP. Overall 
budget constraints prevent us from proposing increased funding for this 
important program. We are encouraging program operators to link with 
activities supported under the Workforce Investment Act. Close 
coordination between the SCSEP and WIA activities can increase both the 
quality of services and quantity of participants.
                        h-2a sheepherder program
    Question. I am concerned about the Department of Labor's ongoing 
review of the Special Sheepherder Guidelines, which govern the 
employment of legal alien sheepherders through the H-2A program.
    A number of sheep ranchers in Idaho and throughout the West utilize 
H-2A to fill job opportunities for which there are not sufficient 
qualified domestic sheepherders. The sheepherders who participate in 
this program perform highly specialized work and make up a critically-
needed, stable work force. The program operates under the authority of 
the Immigration and Nationality Act, the Department's temporary 
agricultural labor certification regulations at 20 CFR 655, and the 
Special Sheepherder Guidelines issued by the Employment and Training 
Administration.
    The alien sheepherder program has been in existence for decades. 
Although the sheepherders are admitted with H-2A visas, this program 
operates fundamentally differently from the traditional, agricultural 
H-2A program. In particular, sheepherder job opportunities are not 
required to be temporary or seasonal, and alien sheepherder may, 
pending annual recertification, be admitted and employed for more than 
one year.
    I understand DOL will issue revised Guidelines in the very near 
future, which may include a one-year contract limitation, as opposed to 
the current three-year contract period. I believe such a revision would 
have a serious, adverse impact on sheep ranchers and workers.
    At the very least, such changes would increase turnover and 
transportation costs. In addition, they would make employment much more 
difficult for the workers. There does not appear to be any compelling 
reason for changing what has been a longstanding practice, one which 
has been known to and consistently accepted by the Department for many 
years.
    I would like to discuss this important issue with you before any 
revised Sheepherder Guidelines are finalized and issued. I believe that 
by working together, we can resolve this issue in a manner that will 
not have an adverse impact on the program of the sheep ranchers or 
workers who use it.
    Answer. We will be happy to discuss the revised guidelines with you 
and your staff prior to the guidelines being finalized and issued. The 
one-year limitation, however, is not part of any proposed revisions. 
The one-year limitation has been in place for several years, and is 
spelled out in Part I, Item B-5 of the ``Special Procedures'' section 
of the Department's Field Memorandum No. 74-89, dated May 31, 1989, 
which established the current special procedures for the certification 
of sheepherders under the H-2A program. Labor certifications for 
sheepherders have always been issued by the Department for a period of 
364 days or less. There have been no instances of certifications of 365 
days or more.
    Question. One of the requirements set by the Department of Labor 
for the employment of H-2A sheepherders is for the payment of at least 
a ``prevailing wage'', based upon the wage paid to similarly-employed 
U.S. workers.
    In its letter dated March 2, 1999, and received by employers 
several days later, DOL gave retroactive notice of its determination 
that the prevailing wage for sheepherders for the 1998-1999 season has 
increased by 15.4 percent in Idaho and 28.6 percent in California, 
effective March 1, 1999.
    Prevailing wage determinations for sheepherders have been 
notoriously inaccurate in the past. Several times, determinations have 
been challenged successfully and amended significantly.
    In this case, DOL's retroactive application of a much bigger 
prevailing wage, without any advance notice puts employers in an unfair 
position. Either they would have to change radically the compensation 
they provide, even if the requirement to do so is rescinded later; or 
else they risk violating the law hoping for a favorable outcome to 
their challenge to the new determinations. Either way, employment 
decisions and workforce morale are needlessly disrupted.
    I am asking you to consider delaying the effective date of these 
new prevailing wage determinations until DOL can fully review, and if 
necessary, conduct another survey and make any appropriate changes. I 
know employers in Idaho and California have made this same request to 
DOL and are ready to assist in a timely review and any new survey.
    Answer. On March 26, 1999, the Department rescinded the original 
March 2, 1999 memorandum which established the retroactive prevailing 
wage rates. The existing prevailing wage rates from 1998-1999 will 
remain in place until the Department issues the 1999-2000 sheepherder 
prevailing wage rates in accordance with the procedures established in 
Field Memorandum No. 74-89. New sheepherder prevailing wage surveys are 
currently being conducted for Arizona, Colorado, Idaho, Montana, 
Nevada, and Washington. California has revisited its survey data and 
has since submitted a revised wage finding. We anticipate publication 
of the rates this summer, after consultation with interested parties.

                         conclusion of hearings

    Senator Specter. Thank you very much, that concludes the 
hearing. The subcommittee will stand in recess subject to the 
call of the Chair.
    [Whereupon, at 11:31 a.m., Tuesday, March 23, the hearings 
were concluded, and the subcommittee was recessed, to reconvene 
subject to the call of the Chair.]


  DEPARTMENTS OF LABOR, HEALTH AND HUMAN SERVICES, AND EDUCATION, AND 
          RELATED AGENCIES APPROPRIATIONS FOR FISCAL YEAR 2000

                              ----------                              

                                       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 Patricia Knaub, Dean, College of Human 
           Environmental Sciences, Oklahoma State University
    Mr. Chairman and Members of the Subcommittee: My name is Patricia 
Knaub. I am Dean of the College of Human Environmental Sciences at 
Oklahoma State University. This testimony is in behalf of the Board on 
Human Sciences of the National Association of State Universities and 
Land Grant Colleges (NASULGC). The Board on Human Sciences (BOHS) 
represents those State Universities and Land Grant Colleges which 
conduct research, outreach/extension education, and academic programs 
on workforce development, human development, family and community 
viability, nutrition and health, food safety and product development. 
Outputs of our work support industry, professions, and the general 
public. Our work is supported by federal, state, and private funded 
grants as well as CSREES formula funds and USDA competitive grants.
    The BOHS strongly supports the Department of Labor funding 
initiatives outlined in the fiscal year 2000 budget proposal. Our 
member universities are prepared to carry out work in support of those 
initiatives, especially Workforce Preparedness and aspects of the 
Secure Workforce.
             enhance opportunities for america's workforce
    The structure of the American landscape has changed dramatically 
during the 20th century from small and moderate sized family farms 
clustered about vibrant communities and a valued quality of family life 
to extremes of large corporate farms and fewer small family operations. 
Population has shifted to cities and suburbs and small towns have 
declined or disappeared, often leaving elderly with limited resources 
and services and displaced farm workers without job skills and economic 
opportunities. Urban populations have swelled with immigrants, many 
with limited language and employment skills.
         promote the economic security of workers and families
    In rural America the decline of the family farm has displaced 
workers from jobs in production agriculture, from the merchandising and 
service industries no longer needed to support the agricultural 
production sector, and left an aging population often without financial 
support for their retirement. Welfare to Work legislation has 
heightened the need for new jobs and job skills, quality child care for 
working families, and skills to manage limited resources be it time or 
money. These needs prevail in urban as well as rural sectors of the 
country.
    Safety nets and transitional skills are needed by those caught in 
the throes of change, but longer term solutions are needed, such as new 
viable job opportunities, risk management skills, financial planning 
and resource management education.
            human sciences researchers and educators respond
    Human Sciences faculty and outreach/extension educators in all 50 
states are conducting programs which directly address the needs of 
individuals and families stressed by changes in the American landscape 
and job skill requirements. But they also are educating pK-l2 and 
college students for greater success in their lifetimes. Further, by 
virtue of the fact that all Human Sciences faculties are linked through 
the Board on Human Sciences, interstate programs are carried out, 
evaluated, and information freely exchanged across the country.
    Welfare to Work.--BOHS faculties across the United States are 
monitoring impacts of the legislation and providing data to state and 
federal policymakers, designing and conducting programs for welfare 
recipients on employment skills, nutrition and family resource 
management, child development and interpersonal relations. Extension 
personnel provide training to welfare recipients over sustained periods 
of time sufficient to effect changed behavior and thus assure a higher 
sustained success rate when recipients transition to the workforce.
    Preparing Youth for the Workforce.--High school students are being 
taught financial management, consumer literacy, job skills and job 
readiness skills to increase potential success in the workforce.
    Retirement Planning.--Human Sciences faculty in several states are 
conducting education in retirement planning and intergenerational 
property transfer as well as financial management for handling current 
needs.
    Workforce Transition.--A major need is being addressed by Human 
Sciences faculties by providing coursework, degree programs, or skill 
upgrade opportunities to help place-bound wage earners transition from 
low paying jobs or those which no longer exist. These opportunities are 
increasingly made available by distance learning technologies so that 
learners can remain at home or study at times available around work 
schedules. Service jobs which can be performed from a home computer, 
development of value-added industries from agricultural or other raw 
products, or the acquisition of academic degrees in healthcare 
professions or dietetics are examples of new opportunities being made 
available to displaced workers.
    We applaud the well targeted budget initiatives of the Department 
of Labor in the fiscal year 2000 budget. Researchers and outreach/
extension educators represented by the Board on Human Sciences 
contribute significantly to the programs addressed in this budget as 
outlined above. We urge your support of this budget. Thank you for your 
attention to our commentary. We wish to continue to work with you and 
the Department of Labor in serving the American workforce.
                                 ______
                                 
Prepared Statement of the Interstate Conference of Employment Security 
                                Agencies
                                overview
    The Interstate Conference of Employment Security Agencies (ICESA) 
is the national organization of state officials responsible for 
workforce security and workforce development services. They administer 
the nation's employment service, unemployment insurance laws, labor 
market information programs and, in almost all states, job training or 
workforce development programs. In most states, these officials are 
also responsible for coordinating workforce development one-stop 
centers, and they play an important role in welfare-to-work services. 
Our members are the lead officials in implementing the Workforce 
Investment Act which Congress passed last August.
    As you know, appropriations for administration of unemployment 
insurance programs, employment services, labor market statistics, and 
certain veterans employment programs come from the Unemployment Trust 
Fund (UTF). The UTF, like the Social Security Trust Fund, is made up of 
dedicated revenues from state and federal employer-paid payroll taxes. 
While the trust fund revenues are sufficient to fully fund the 
operation of these programs, the focus on elimination of the federal 
budget deficit and the inclusion of unemployment trust funds in budget 
deficit calculations have undermined the funding arrangements set up by 
the system's founders. A survey by ICESA in 1997 showed that 43 states 
were using over $200 million in state funds to supplement federal 
appropriations for employment security administration. We just 
completed an update of this survey and it shows that in 1999, 49 states 
will be supplementing appropriations for employment security 
administration with over $400 million in state funds.
    Frustration with the federal budget and appropriations process has 
convinced states that a fundamental change in the administrative 
funding arrangements of the employment security system is needed. For 
example, a coalition of states and business interests has developed a 
proposal to shift responsibility for collection of federal unemployment 
taxes to the states which would retain most of the funds. More than 
half of the states currently support this proposal, and the chair of 
the House Ways and Means Committee, Subcommittee on Human Resources, is 
expected to introduce legislation this session to address inequities in 
the system.
                      one-stop employment services
    Last year Congress passed bi-partisan legislation--the Workforce 
Investment Act--that consolidates job training programs and develops an 
integrated workforce development/one-stop service system. On behalf of 
the states, we would like to take this opportunity to thank Congress 
and the Administration for passing this much needed reform. While this 
legislation was enacted only eight months ago, state and local 
workforce officials have been moving towards a one-stop service 
delivery system for a number of years, i.e., ensuring that customers--
jobseekers and employers--can access the full array of employment, 
unemployment, training, and labor market information services easily 
and through a no-wrong-door approach.
    The Department of Labor and virtually all of the states view the 
state employment services as the essential ``glue'' that holds together 
the one-stop systems. The employment service plays a critical role in 
one-stop service delivery as the primary job finding source for 
jobseekers and the primary applicant finding source for employers. From 
July 1, 1997 through June 30, 1998, nearly 18 million people registered 
with the state employment services and nearly 12 million of those 
received services from the system beyond registration. Moreover, the 
highly successful America's Job Bank and related America's Career Kit 
tools are all built on the states' public employment service system. In 
any given day, there are over 850,000 job openings on America's Job 
Bank, making it by far the largest job bank on the Internet. The one-
stop grants that have been awarded to every state now have been used to 
build linked information systems; in some cases these funds have helped 
integrate services in shared physical facilities, and in others, the 
funds have been used to develop and implement new customer-friendly 
technologies and service delivery approaches.
    But a successful workforce investment system is more than just 
computers and nationally-built technologies and tools. The 
Administration has requested $149 million for these tools and other 
related initiatives and no increase in funding for frontline service 
delivery. We ask you instead to commit additional funds to ES state 
allotments-the foundation of the one-stop center systems and the 
assurance of universal services for both jobseekers and employers. In 
addition to their importance to the continued operation and success of 
state one-stop systems, the state employment services represent the 
main linkage between employment and training programs and the 
unemployment insurance system. The employment services are the vehicle 
to provide job search assistance to unemployed individuals and to 
ensure their earliest possible return to work.
    An $811 million investment in the state employment services is 
critical to the one-stop systems in the states, to providing effective 
job search assistance to unemployed workers and saving trust fund 
dollars, to meeting employers' requirements for skilled workers, and to 
maintaining and enhancing new electronic tools to efficiently and 
effectively match jobseekers to available jobs.
                   universal reemployment initiative
    The states support the long-term goals outlined in the 
Administration's Universal Reemployment Initiative which include: (1) 
access to reemployment services for all dislocated workers; (2) 
reemployment assistance to all unemployment insurance claimants and 
jobseekers; and (3) access to one-stop centers for all Americans. We 
support the Administration's request for $53 million for reemployment 
services grants to provide increased services to UI claimants and an 
additional $190 million for dislocated workers. By reducing the 
duration of benefits, reemployment services save substantially more in 
unemployment benefits than they cost. However, as called for under the 
Workforce Investment Act, we ask that the members of this subcommittee 
help ensure the states have flexibility in determining how these 
additional funds can best be used in their labor markets to accomplish 
the above-noted goals.
                national activities--employment service
    In addition to $811 million for state employment services 
allotments and the $53 million for reemployment services for UI 
claimants, there are three programs/initiatives funded under ES 
national activities that are critical:
    The Electronic Labor Exchange.--As stated earlier, the state 
employment services are the source of the job vacancies currently 
listed in the highly acclaimed and often cited America's Job Bank. The 
success of this electronic labor exchange tool is well known. To 
illustrate its growing popularity, in July 1996, 7.2 million customer 
transactions were recorded on AJB. In March 1999, more than 2 million 
transactions were recorded every day. That figure includes more than 
350,000 job searches of the 850,000 jobs on the site that come from 
nearly 80,000 employers. As indicated earlier, this makes America's Job 
Bank by far the largest job bank on the Internet, and certainly one of 
the most active. We urge you to continue supporting these exciting 
tools of the state employment services.
    Alien Labor Certification.--Federal alien labor certification laws 
ensure that admission of foreign workers on a permanent or temporary 
basis does not affect adversely the job opportunities, wages and 
working conditions of U.S. workers. State employment security agencies 
oversee and evaluate the recruitment efforts of employers for U.S. 
workers and assure that ``prevailing wages'' are being offered for 
particular positions before a certification can be issued that the 
employers can hire foreign workers.
    Federal funding for administration of the Alien Labor Certification 
program by the states has been cut dramatically in recent years--over 
50 percent in the last three years--while workload has soared. The 
combination of this severe cut in funding and a significant increase in 
cases brought about by changes to federal immigration laws has resulted 
in huge backlogs--cases pending for more than a year in some states. 
The frustration of parties to the pending cases has resulted in threats 
of violence to state agencies. Several states have considered whether 
to refuse to continue to operate the program under these untenable 
conditions.
    This year, the Administration's fiscal year 2000 budget proposes to 
transfer the Alien Labor Certification programs and resources from the 
Employment and Training Administration (ETA) to the Employment 
Standards Administration (ESA), and to take over most of the states' 
responsibilities for the program. We look forward to working with the 
Administration to explore this proposal. In the meantime, we ask that 
adequate funds--$50.5 million--be provided to the states to address the 
significant backlogs in this program.
    The Work Opportunity Tax Credit (WOTC) and Welfare-to-Work (W2W) 
Tax Credit are federal tax credits administered by state employment 
security agencies that encourage employers to hire certain jobseekers. 
The WOTC and the WtW tax credits were recently extended through June 
30, 1999. The Administration's fiscal year 2000 budget request proposes 
to extend these two programs through June 30, 2000, and proposes a user 
fee on employers for the certification of these workers. States have 
worked hard to market these two programs to employers, despite their 
on-again, off-again availability. Some states are concerned that 
charging a fee for these programs will result in discouraging employers 
from hiring these individuals with multiple barriers. As the public 
policy debate continues on whether or not it is appropriate to charge a 
fee for this service, in order for state agencies to make timely 
certifications of eligibility so businesses can claim the tax credit, 
administrative funds are essential. ICESA requests $20 million for 
state administration of these two programs.
                         unemployment insurance
    We would like to thank the subcommittee for the $40 million in 
fiscal year 1999 appropriations to bring the computer systems of state 
employment security agencies into compliance with year 2000 
requirements. ICESA's members have worked diligently on revising 
countless lines of computer program code to ensure that payment of 
unemployment benefits is not disrupted because of the ``millennium 
bug.'' This investment has paid dividends already; major year 2000 
problems beginning in January 1999 were avoided as new claimants became 
eligible for benefits that can be paid during a benefit year that 
extends into 2000. Although more work remains, the year 2000 compliance 
achieved so far would have been impossible for many states without 
these appropriated funds.
    Even during this time when the unemployment rate is low, the 
unemployment insurance system plays a larger role than one might 
imagine. In a dynamic economy, workers might lose their jobs in one 
sector of the economy, but might find new jobs in another sector. 
During the time they look for new jobs, unemployment insurance provides 
a safety net of temporary and partial wage replacement. In fiscal year 
2000, state unemployment insurance programs are expected to pay $25.7 
billion in benefits to 8.3 million unemployed workers and collect $23.5 
billion in state unemployment taxes.
    The federal-state partnership in the unemployment insurance program 
has worked well during most of the 63-year history of the program, but 
recently it has been strained. This strain has stemmed largely from the 
compelling desire of the federal government to reduce chronic budget 
deficits and balance the budget by restraining federal spending. 
Although the federal budget now is running a surplus, there still is a 
growing gap at the state level between the federal funding needed to 
administer the program in a proper and efficient manner and the amounts 
actually appropriated by the federal government. States have tried to 
make up the difference with their own funds totaling about $70 million, 
but administration of unemployment insurance is supposed to be funded 
fully by the federal government from the dedicated trust fund. Even 
with this $70 million in state money, funding still falls about $100 
million short of what the U.S. Department of Labor (USDOL) estimates 
the program needs for proper and efficient administration
    For fiscal year 2000, we urge you to provide $2.626 billion for 
state unemployment insurance administration--the sum of the President's 
request of $2.460 billion for state unemployment insurance activities 
and the federal shortfall estimated by USDOL at $0.166 billion. ICESA 
members understand the severe spending caps to which the budget process 
subjects such discretionary spending, but we hope Congress will agree 
now is the time to correct this imbalance. The proper and efficient 
administration of employer payroll taxes to finance the UI system and 
to pay UI benefits to unemployed workers depends on it.
    As part the $2.626 billion we urge your support for:
  --$71 million for new unemployment insurance integrity activities.--
        These funds are needed to support intensified tax collection, 
        audit and claims monitoring activities. They will be used to: 
        reduce accounts receivable; register and subject to 
        unemployment taxes all new employers immediately; improve 
        collection of delinquent taxes; implement and improve fraud 
        cross match programs; train staff in claims adjudication; and 
        improve detection and collection of benefit overpayments. This 
        $71 million appropriation will be more than offset in the 
        federal budget by increased taxes collected and overpayments 
        prevented or recovered.
  --$7 million for new research efforts.--Such research efforts include 
        documenting and disseminating promising practices, assessing 
        policy and program alternatives, and evaluating administrative 
        efficiency through the use of new technologies, such as the 
        internet and voice response systems.
    Finally, there is one Administration proposal that we cannot 
support--$40 million of employer-paid unemployment taxes to ``expand 
wage record formats to include an individual's full name in order that 
records submitted to the National Directory of New Hires can be 
verified by the Social Security Administration.'' This proposal might 
be worthy to assist the child support enforcement program in finding 
missing parents who owe child support, but it has little to do with the 
proper and efficient administration of the unemployment insurance 
system. We suggest that if this is a worthy proposal, the funds should 
derive from general revenues, and not at the expense of the day-to-day 
core administrative activities of the unemployment insurance program. 
Instead, we recommend that this $40 million be used to offset some of 
the $166 million shortfall described above for state unemployment 
administration.
                        labor market information
    Congress's passage of the Workforce Investment Act delineates for 
the first time in statute a system of labor market information or 
employment statistics to serve customers. The new legislation makes 
clear that accurate and timely information is an essential part of our 
economic infrastructure, providing localized information about 
employment, jobs, and workers. Such information is an invaluable 
resource for jobseekers, businesses, educators, and young persons who 
are planning careers--answering their questions of: Where are the jobs 
of the future? What changes are occurring in the skill requirements for 
today's and tomorrow's jobs? Which industries are growing rapidly? 
Where are layoffs occurring?
    State employment statistics directors, consulting with the Bureau 
of Labor Statistics and other federal agencies, are working to develop 
the strategic plan for this new employment statistics system of 
coordinated national, state, and local information. This cooperatively 
developed system will need to identify and implement the strategies to 
meet the information needs of customers, eliminate information gaps and 
advance customers' access to information. The largest challenge will be 
serving the expanding customer-base called for by the legislation to 
provide information for local program delivery and individual customer 
decision-making. ICESA is requesting adequate funding for this 
expanding need for localized information called for in WIA. Based upon 
the 1999 survey discussed earlier, states are already supplementing 
this critical need for customized local information with over $9.5 
million in state supplemental appropriations.
    Today's information technology presents a dazzling array of 
opportunities to integrate and create powerful new tools to meet these 
needs. Another strength is the experience of the Bureau of Labor 
Statistics and the states in providing high quality information. 
Merging these two assets, with funding to meet the new customers' 
information demands, will provide information to speed the efficiency 
of the labor market, shortening the time workers are looking for work 
and employers are seeking workers. ICESA supports $197.5 million for 
the cooperative statistical programs with the Bureau of Labor 
Statistics, $37 million for ``core products and services,'' and 
continuation of funding ($10.1 million) for the research and 
development activities under the consortia grants to states included 
within the ALMIS/One-Stop system funding.
                   veterans' employment and training
    Congress has made it clear that providing employment services for 
veterans is a national responsibility. Title 38 of the U.S. Code 
includes provisions for special employment services for veterans, with 
priority given to disabled and Vietnam era veterans, through the 
Disabled Veterans Outreach Program (DVOP) and Local Veterans Employment 
Representative (LVER) program, which are administered by the state 
employment security agencies. DVOPs and LVERs serve our veterans 
population by helping to ensure a smooth transition of separating 
military personnel into the civilian workforce.
    Title 38 also provides formulas to determine DVOP and LVER staffing 
levels. Since 1990, appropriations for DVOPs and LVERs have not 
supported the number of positions authorized by the statutory formulas. 
In fiscal year 1997, the appropriation funded 440 fewer DVOP 
specialists and 260 fewer LVER staff than authorized by the statutory 
formulas. Many one-stop centers do not have veterans' staff. ICESA 
encourages the subcommittee to explore funding above last year's level 
that would allow at least one DVOP and LVER in every full-service 
office. Specialized veterans' employment representatives working in 
one-stop career centers nationwide will help ensure that our nation 
does not abandon the fine men and women separating from the military.
              adult, dislocated worker and youth training
    While economic growth in the United States is the envy of the rest 
of the world, one of the problems of our current economy is a lack of 
qualified workers for many job openings. The economic sectors where 
there are labor shortages include entry level jobs, where potential 
workers need basic skills, as well as information technology jobs where 
workers with highly specialized skills are needed.
    Federal job training programs for disadvantaged adults and youth 
help to prepare welfare recipients, students, and others to enter the 
labor force; programs for dislocated workers help these workers develop 
new skills to participate in the ``new economy.''
    As states and locals move to implement the Workforce Investment 
Act, adequate funding is critical if we are to be successful. We urge 
your continued support for the Administration's request of $955 million 
for adult training, $1.596 billion for dislocated workers, and $1.251 
billion for youth job training programs as authorized under WIA.
                               conclusion
    In summary, our message is one of encouraging efficient and 
effective investment of public resources in a strong workforce security 
and workforce development system built on the infrastructure that 
exists today. We are concerned about the continued deterioration in 
funding for the nation's employment security system and ask that 
adequate funds be appropriated to support the core, universal programs 
and services. With your help and targeted investment, we have the 
ability to link unemployment, employment, labor market information, and 
training programs together to create a workforce investment system that 
provides seamless, high quality customer service to America's employers 
and jobseekers.
                                 ______
                                 

                DEPARTMENT OF HEALTH AND HUMAN SERVICES

                               NIH/Health
 Prepared Statement of Dr. Raymond E. Bye, Jr., Interim 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 Carnegie Research I 
University several years ago, Florida State University currently 
exceeds $110 million per year in research expenditures. With no 
agricultural or 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 fourth this year among 
all U.S. universities in royalties collected from its patents and 
licenses, and first among individual public universities. In short, 
Florida State University is an exciting and rapidly changing 
institution.
    I would like to raise an important issue with you and the Members 
of this Subcommittee as you make your important allocation decisions in 
the next several days and weeks. There is growing concern within the 
scientific and engineering community that the issue of balancing 
federal R&D is tilting more heavily toward certain areas of scientific 
research. It is clear that some caution is appropriate as you face 
those difficult choices, but I would suggest a somewhat different 
viewpoint. First, it is obvious that the appropriations process is such 
that R&D funding is spread among several major subcommittees rather 
than concentrated in one subcommittee. If the latter were the case, 
that subcommittee and its chair would have the non-trivial task of 
making difficult allocation decisions among the many and varied R&D 
agencies. That is not the case and allocations to R&D are heavily 
dependent on subcommittee allocations from the full Committee in the 
302.b process. If your Subcommittee has been successful in that 
internal allocation process, then it is likely a partial result of the 
political popularity of some of the programs within your Subcommittee's 
jurisdiction. The biomedical community has been very successful in 
making the case for greatly expanded funding for the National 
Institutes for Health.(NIH). Pressures for increased funding for some 
other scientific or engineering areas may not have the same appeal as 
does funding for NIH.
    That appears to have been the case previously. It may well be the 
case again. So in order to recognize and possibly respond to statements 
about the importance of all scientific areas as the foundation for 
advances in the biomedical fields from such prominent scientists as 
Drs. Harold Varmus and Neal Lane, your Subcommittee might consider 
another way to assist in the advancing of other crucial fields of 
science while supporting key areas of research and technology 
development for NIH. In January 1999, the Office of Science and 
Technology Policy (OSTP) released a report that focused on an analysis 
of national requirements for synchrotrons, instruments most often 
funded by the U.S. Department of Energy (DOE). That report, while 
noting that the number of synchrotrons available were probably 
adequate, that additional funding was needed to upgrade and improve 
some of the existing ones. The report encouraged NIH, because of the 
medical and biomedical applications that can emerge from work done on 
these instruments, to provide funding for these upgrades. NIH responded 
and provided substantial funding in fiscal year 1999. The report went 
on to indicate that at least one additional area might be a candidate 
for such an NIH effort; that area was nuclear magnetic resonance (NMR) 
instrumentation.
    The need for new state-of-the-art nuclear magnetic resonance 
instrumentation has been identified and discussed by several hundred 
scientists who met in Washington, DC last January 1998. The result of 
that two-day session was a report entitled National Magnetic Resonance 
Collaboratorium: A Report by the Committee for High Field NMR (August 
1998). That report proposed a national collaboratorium of universities 
and national laboratories which would be linked by internet 
capabilities. Each institution involved would bring some of the finest 
intellectual talent available to undertake research on a variety of 
areas including biology, biomedical sciences, and materials among 
others. Each institutions would also have major and substantial NMR 
instrumentation already in place; those instruments would be augmented 
by new NMR instruments that would be developed at the highest possible 
fields.
    As I mentioned, there are a number of scientific fields and 
cutting-edge research issues that will lead to incredible opportunities 
intellectually and economically. From gene research to new materials, 
from gene regulation to challenges in neurosciences, the higher fields 
that can be reached in nuclear magnetic resonance will produce some of 
the most exciting science of the 21st century.
    Discussions on the new opportunities have been discussed with key 
officials at NSF, DOE, NIH, and OSTP. There is excitement at all of 
these agencies about the prospects and possibilities if high field NMR 
could be funded. Yet agencies like NSF, which feel the opportunities 
for such research and development are tremendous, has limited budget 
growth and opportunity to undertake a major new research 
instrumentation program even though NSF has the experience and programs 
to manage such an effort. (The Report on High Field NMR estimated that 
the cost of instrumentation for 10 sites in the Collaboratorium was 
estimated at $260 million and annual operating costs approximately 
$22.5 million.) NIH was also excited about the possibilities, but NIH 
does not have high field NMR instrument development in their fiscal 
year 2000 budget. NIH's current instrumentation program, housed largely 
in the National Center for Research Resources (NCRR), also is not 
geared to such a large extramural instrumentation program.
    This leads me to a suggestion for your Subcommittee to consider, 
Mr. Chairman. Can NIH resources, as in the case of synchrotrons noted 
earlier, be devoted to high field nuclear magnetic resonance, as 
recommended by the OSTP report mentioned earlier, and utilize the 
management talents and scientific requirements acknowledged by both NSF 
and NIH to fund such an effort?
    If such an effort were to be even considered, my colleagues at 
Florida State University's National High Magnetic Field Laboratory 
(NHMFL) and numerous scientists at a large number of key universities 
and laboratories around the Nation stand ready to discuss these 
possibilities with you.
    Thank you for the opportunity to present these views to you and 
your Subcommittee.
                                 ______
                                 
           Prepared Statement of the Tri-Council for Nursing
    The four nursing associations that comprise The Tri-Council for 
Nursing appreciate the opportunity to present this statement on Title 
VIII of the Public Health Service Act (Nurse Education Act or NEA), 
that provides for Nursing Workforce Development and the National 
Institute of Nursing Research. Ensuring a sufficient number of 
qualified nurses is a critical issue in providing essential health care 
in this nation.
    The Tri-Council for Nursing collectively represents nurses in every 
sector of the nursing profession. Its four major national nursing 
organizations include:
    The American Association of Colleges of Nursing representing 534 
baccalaureate and graduate nursing education programs in senior 
colleges and universities across the United States;
    The American Nurses Association with 174,000 registered nurse 
members in 53 constituent state and territorial associations;
    The American Organization of Nurse Executives representing 5,000 
nurses in executive practice in all types of healthcare settings; and
    The National League for Nursing on behalf of 1,674 education agency 
members representing all levels of nursing education, 37 constituent 
state leagues representing 40 states, 104 healthcare institutions, 67 
academic nursing centers and non-academic agencies, and 6,842 
individual members, including nursing school faculty, nurses at all 
levels of practice, and consumers.
    The Tri-Council for Nursing believes that the fiscal year 1999 
figure of $67 million for the Nurse Education Act begins to underscore 
the importance of nursing education programs to the public health. For 
fiscal year 2000, The Tri-Council for Nursing recommends an increase in 
NEA funding of 10 percent over fiscal year 1999 funding. This increase 
would fund the Nurse Education Act programs at approximately $74 
million.
    The Tri-Council for Nursing expresses its appreciation for the 
fiscal year 1999 levels of funding for the programs critical to nursing 
education and research such as the Nurse Education Act and National 
Institute of Nursing Research at NIH. The 1999 level of funding will be 
spent to improve the public health, but even this level of funding is 
insufficient to meet today's demand for nurses.
                        the nurse education act
    The Nurse Education Act was re-authorized in 1998. It is the key 
source of federal financial support for nursing education programs and 
nursing students. The NEA and its student loan program primarily seek 
to encourage preparation of undergraduate nursing students and advance 
practice nurses (APNs) that are in high demand for care of under-served 
populations. APNs include nurse practitioners, nurse midwives, clinical 
nurse specialists and nurse anesthetists.
    Nursing workforce issues are of paramount concern now and for the 
future. The shortfall of registered nurses predicted by the year 2010 
is already being evidenced today. (Findings from the National Sample 
Survey of Registered Nurses, Division of Nursing, DHHS, March 1996) A 
recent survey of Nurse Staffing concluded that there is a critical 
shortage of nurses prepared in specialty areas of practice, in all 
types of settings and in all geographic locations in the country. 
(Survey on Nursing Staff Shortages: The American Organization of Nurse 
Executives, 1999)
    Information about pending nursing shortages underscores the fact 
that nurses are integral to effective health care delivery in this 
country. Having sufficient numbers of qualified nurses to provide 
patient care is essential to accessible, quality patient care. Nurses 
provide essential care in every type of care setting: primary care, 
acute and long term care and care of the chronically ill, disabled and 
elderly and those at the end of life in a variety of traditional and 
non-traditional settings. Title VIII provides the essential support 
needed to ensure the nursing workforce needed to serve the public's 
requirements for health.
    Early warning signs portend a nursing shortage that is very 
different from previous shortages. This shortage will be challenged by 
demographics in the nursing profession. The average age of nurses has 
increased to a high today of 44 years, and will continue to increase. 
In addition, the demand for nurses prepared for specialty nursing 
practice will only increase, with the burgeoning patient care 
technology and continued change in health care delivery. Also, 
enrollments in baccalaureate nursing programs have declined for the 
past four years. This year, even Masters program enrollments are down. 
(``1998-1999 Enrollment and Graduations in Baccalaureate and Graduate 
Programs in Nursing,'' AACN, 1999). These changes compound what could 
be a serious nurse shortage in the areas typically hard hit by 
shortages, such as underserved populations and special patient 
populations.
    The NEA provides support for nurse practitioners, nurse midwives, 
nurse anesthetists and other advanced nursing programs. Nursing 
administration is now included in recognition of the priority for 
talented nursing management in health care organizations. Federal 
funding for these programs has had a significant impact on increasing 
the supply of nurse practitioners, nurse midwives and clinical nurse 
specialists. Yet the supply of these well-trained professionals 
continues to lag behind demand. One of the biggest challenges facing 
health care organizations today is finding sufficient numbers of 
qualified nurses for specialty practice.
    The NEA provides modest stipends to master's and doctoral students 
and offers disadvantaged students the help they need to attain nursing 
education. This essential student support enables individuals who might 
not otherwise complete advanced education to make major contributions 
to health care in their local communities and regions.
    Emerging unmet health care needs will increase the burden on the 
already over-extended nursing workforce. Areas of emerging serious 
concern include child health, immune compromised individuals, older 
persons, low-income individuals, people with mental illness and with 
substance abuse problems. People in these specialized populations have 
complex care demands. Their needs are intertwined with social and 
behavioral issues that are not easily resolved. There is need for 
innovation to develop care delivery approaches to better meet their 
special requirements. Interventions are needed now, because there is 
evidence of ever-increasing demand for care by these groups.
    In today's health care delivery, nursing is not only being asked to 
expand its functions, but also to innovate in care delivery. The scarce 
resources for care are being experienced in every sector of health 
care. Nursing, at the core of the health care system, is experiencing 
the profound effects of reduced resources. In response, nurses are 
taking on increased responsibility for patient care to meet the 
challenges of this dynamic health care environment. As the complexity 
of care continues to increase, nurses and others must continue to 
stretch their capacity and the resources.
    The NEA will continue to encourage programs that link training to 
the delivery of primary care for underserved people. The Tri-Council 
for Nursing supports funding for programs that provide repayment for 
academic loans for nurses who agree to practice in areas of nurse 
shortage. These areas include public hospitals, community health 
centers, American Indian facilities and public health services. Having 
adequate numbers of nurses caring for patients in these underserved 
areas is critical to the nation's goals for health.
    Through the support of NEA funding, nurses have achieved 
innovations that have extended the capacity to provide care for people 
in special population groups. Care provided by nurses in more non-
traditional type care settings such as community based health care 
centers and primary care sites have made care more accessible to the 
public. NEA funding that has supported these efforts includes both the 
programs to educate APNs and future nurse faculty.
    Nursing is one of the key health professions, working with others 
to provide care, a point that will be further clarified by the next 
National Sample Survey of Registered Nurses, scheduled for March 2000. 
This survey is expected to provide essential information on integrated 
practice, which is critical in today's environment. We are encouraged 
by joint efforts by the Council of Graduate Medical Education and the 
National Advisory Council on Nurse Education and Practice, the Bureau 
of Health Professions in this regard.
    Another area of particular importance is the technologic advances 
that engender innovation in providing both patient care and education 
for nurses. The ever-evolving patient care technology allows access to 
nursing care by patients in a different delivery modes. Many patients 
obtain their first line care information from telehealth provided by 
nurses. This nursing care improves both access to care and improves use 
of health care resources. Technology also allows sharing of 
professional expertise across settings, thereby closing the gap between 
care settings in geographically distant locations. Additionally, the 
technology increases the opportunity for patient and family self-care, 
which requires corresponding patient education, consultation and 
support. The new NEA could support projects that allow nurses to 
design, manage and facilitate these new types of patient care and to 
best utilize the available resources.
    The NEA provides for increasing the diversity of the nursing 
workforce. Although the number of nurses from minority backgrounds 
increased at a somewhat faster rate between 1992 and 1998, they only 
comprise ten percent of the nation's registered nurse population. 
Funding for this important focus is critical to achieving the goal of 
increasing the number of nurses who are representative of the 
populations they serve. The NEA also helps disadvantaged students 
become nurses.
    The new NEA also provides for strengthening the capacity for basic 
nursing education and practice. The leverage provided through federal 
influence helps focus critical areas for study and development, 
essential now that the nation faces the possibility of a critical 
shortage of nurses. Bold steps must be taken to meet workforce demands 
in the face of rapid change in demand for care and in the nursing 
workforce.
    The importance of information for present and future planning is 
recognized in the NEA. The Tri-Council for Nursing strongly supports 
Division of Nursing initiatives to assess the practice choices made by 
nurses who have benefited from NEA funding. The estimates on the 
projected supply and distribution of nurses and work on improved 
forecasting models could impact readiness for patient care in 
significant ways.
    Informatics is a key aspect of future practice and is important to 
the Tri-Council for Nursing. Work on the National Nursing Informatics 
Agenda is of continuing value in addressing interdisciplinary patient 
care planning and interventions. Future care will be not only 
interdisciplinary but also across settings in new and different ways.
               the national institute of nursing research
    The purpose of the National Institute of Nursing Research at the 
National Institutes of Health is to support clinical and basic research 
and to answer complex and difficult questions in patient care delivery. 
NINR funds projects that deal with care of individuals across the life 
span. The scope of NINR issues encompasses promotion of healthy 
lifestyles, care during illness, reducing risks for disease and 
disability and to provide care for the at-risk and undeserved 
populations.
    Research programs supported by the NINR address a number of 
critical public health and patient care issues and questions. NINR 
research has added significantly to the science of patient care and has 
contributed to improved public health and has helped to lower the cost 
of care, through new ways to meet patient demand for health care. NINR 
studies have addressed diabetes in Hispanic populations and 
cardiovascular disease in African American children and youth. A 
hospital discharge planning and care study using advanced practice 
nurses has improved health outcomes and decreased readmission rates for 
low birth weight babies and elderly patients at risk. This year the 
nursing community is seeking a $20.9 million funding increase for the 
NINR for fiscal year 2000. This increase would provide more adequate 
funding for the scope of NINR programs at $90.7 million.
    NINR has supported research, important to key issues in health care 
today. Among the topics of this research are health and risk behaviors, 
pain management which is a key aspect for patients and families in end-
of-life care, care of patients with immune and infectious diseases, 
care of patients with cancer, with renal and urinary diseases; trauma 
care; wound healing and mental health. Studies in the area of 
healthcare delivery include acute care hospital nursing practices, 
accountability for patient care outcomes, long term care practices, 
women's health, neuro-function and cognition and musculoskeletal 
diseases, metabolic and diabetes and long term care.
    The Tri-Council for Nursing appreciates the opportunity to present 
its fiscal 2000 recommendations for nursing education and research. We 
look forward to working with the subcommittee to achieve these funding 
levels.
    American Association of Colleges of Nursing, One Dupont Circle, 
Suite 530 Washington, DC 20036 202/463-6930 FAX: 202/785-8320
    American Nurses Association, 600 Maryland Avenue, SW--Suite 100W 
Washington, DC 20024 202/651-7000 FAX: 202/651-7001
    American Organization of Nurse Executives, One North Franklin 
Chicago, IL 60606 312/422-2800 FAX: 312/422-4503
    National League for Nursing, 61 Broadway, 33rd Floor New York, NY 
10006 212/363-5555 FAX: 212/812-0393
                                 ______
                                 
     Prepared Statement of William G. Thilly, President, American 
     Association of University Environmental Health Science Centers
    First, let me thank the Sub-Committee for the opportunity to 
testify and staff members for their helpfulness.
    My remarks are intended to provide the rationale for doubling the 
National Institutes of Health's (NIH) budget by fiscal year 2003 and 
for a prudent increase in the National Institute of Environmental 
Health Sciences' (NIEHS) funding above the fiscal year 1999 mark of 
$368,456,000. We think the amount that would sustain growth and support 
important new initiatives is at least a 15 percent increase to 
$423,724,000 for fiscal year 2000.
    Much too often public health decisions are made with inadequate and 
uncertain information. None of us want to be exposed to things that can 
hurt us or our children. But how do we know what is harmful? Regulatory 
agencies have to rely on ``consensus'' opinions of scientists who are 
forced to make ``best guesses'' about potential human harm. These 
``guesses'' rely principally on experiments in single cells or animals. 
One institute at NIH, the National Institute of Environmental Health 
Sciences has taken on the special responsibility to engage leading 
researchers to find out what is really happening in people.
    The mission of the NIEHS is to reduce the burden of human illness 
and dysfunction from environmental causes. The NIEHS first focuses on 
discovering whether a human disease has important environmental risk 
factors. When an environmental risk is established, then investment is 
made in discovering the underlying mechanisms and explicitly defining 
the inherited and environmental risk factors. Their history of defining 
the role of lead in causing learning deficits in children is probably 
their most noted accomplishment. But today NIEHS grantees are in 
pursuit of the environmental factors which have led to a steady 
increase in Americans' risk of leukemia, lymphoma and brain cancer. 
Several of the NIEHS Centers are looking at the changes in pollutants 
city children have been breathing in order to track down the dramatic 
increase in asthma in the past thirty years. These and other diseases 
can be documented as increasing from public health records the analysis 
of which leads to prima facie evidence of the diseases with important 
environmental causes.
    The NIEHS university research is supported through traditional 
Research Project grants (R01s) and Program Projects (P01s), which are 
in the ``Regular Research Project Grant'' (RPG) category. Center Core 
Grants (P30) and the Superfund Hazardous Substance Basic Research 
Grants (P42) create interdisciplinary teams necessary for taking on 
these complex public health problems.
    The NIEHS Center for Environmental Health Sciences (CEHS) at MIT 
illustrates this integration: CEHS has organized all Massachusetts 
mortality records since 1969 on a town by town basis and have noted 
that the age dependent death rates for many cancers are highest in 
urban areas, intermediate in suburbs and even lower in rural areas. 
Their geneticists have devised means to measure genetic changes 
directly in human organs and their analytical toxicologists developed 
the means to identify chemicals reacting with DNA. Finally, the MIT 
environmental engineers are defining the pathways of human exposure of 
these chemicals through air, food and water.
    The support for health research by this subcommittee has greatly 
strengthened our country in biomedical research. Unfortunately, the 
investment in discovering real environmental health threats through 
NIEHS or other NIH programs research has not grown commensurate with 
the NIH budget. Again, we request that you make a timely investment in 
NIEHS sponsored and other NIH environmental health research this year. 
We ask for your continued support to double the NIH budget by fiscal 
year 2003 and for a prudent increase in NIEHS' funding above the fiscal 
year 1999 mark of $368,456,000. We think the amount that would sustain 
growth and support important new initiatives would be at least a 15 
percent increase to $423,724,000 for fiscal year 2000.
                                 ______
                                 
             Prepared Statement of the Epilepsy Foundation
    The Epilepsy Foundation is the national voluntary organization that 
works for people affected by seizures through research, education, 
advocacy and service. Founded in 1968, its national office is based in 
Landover, Maryland. More than 60 affiliates across the country provide 
direct services to individuals and families, including: community 
education; employment assistance; recreation; professional education 
conferences; assisted living, and case management and counseling.
    Epilepsy and seizures affect 2.3 million Americans of all ages, at 
an estimated annual cost of $12.5 billion in direct and indirect costs. 
Approximately 181,000 new cases of seizure and epilepsy occur each 
year; 10 percent of Americans will experience seizures in their 
lifetimes; 3 percent will develop epilepsy by age 75.
    In 1995, 300,000 children aged 14 and under had epilepsy; 1.4 
million adults under age 64 and 550,000 aged 65 and over had epilepsy. 
Advances in medical treatment enable many people to live normal lives 
free from seizures. However, epilepsy is a chronic condition that 
usually requires a lifetime of continual medical treatment and 
education. Currently, there is no cure for epilepsy.
    Many people with epilepsy are able to control their seizures with 
medications. Approximately 60 percent achieve remission after the first 
year; 15 percent achieve control at a later date. Yet, in 25 percent of 
people with epilepsy, seizures resist control and become intractable. 
For this group, comprising hundreds of thousands of people, epilepsy is 
a formidable barrier to normal life, affecting educational attainment, 
employment, and personal fulfillment. Marriage and fertility rates are 
reduced in both sexes and women face special issues throughout their 
lives. Children and adults are at risk of brain damage and increased 
mortality when seizures resist control. The stigma that comes from 
seizures and societal misconceptions about them remain as facts of life 
for many with epilepsy.
    Epilepsy is a major, unsolved health problem affecting the lives of 
millions of Americans and their families. The economic impact of 
epilepsy in the United States is also tremendous. According to the 
results of a cost-of-illness study issued in 1978 by the Commission for 
the Control of Epilepsy and its Consequences, Department of Health, 
Education and Welfare, the national economic burden of epilepsy in 
1975, was estimated to be $3.6 billion in direct and indirect costs. 
Preliminary findings of an Epilepsy Foundation-sponsored study on the 
1995 costs of epilepsy (using data from actual cases as a basis for the 
estimates) show that the total cost to the nation for 2.3 million 
people with epilepsy and seizures is approximately $12.5 billion. Of 
this, $1.7 billion (14 percent) are direct medical costs while $10.8 
billion (86 percent) are indirect costs.
    Indirect costs are primarily employment related. Costs include lost 
wages from people who have withdrawn from the labor market, reduction 
in earnings for those still employed, and home production losses based 
on reduced hours in home production activities. The professional 
literature and testimony of people with epilepsy who contact the 
Epilepsy Foundation also support the fact that epilepsy can have 
devastating effects on employability.
                     advances in epilepsy research
Epilepsy in children
    The severe epilepsy syndromes of childhood produce developmental 
delay and brain damage that can result in a lifetime of dependence on 
others and continually accruing costs to the health care system and 
society. Fundamental research questions about epilepsy in children must 
be addressed. For example, epilepsy is the most common of all 
neurological disorders among children, affecting approximately 300,000 
infants less than a year old, with 37,000 new cases occurring each 
year. What factors in the developing brain predispose children to 
seizures? How can we predict which children will outgrow epilepsy and 
in which children will epilepsy worsen? Research has led to the 
discovery of good predictors for remission or relapse of epilepsy in 
children. Research focused on the prevention and treatment of epilepsy 
at this vulnerable time of life should be a national priority.
Women with epilepsy
    More than one million women in the United States have epilepsy. 
Women with epilepsy face epilepsy-related problems throughout their 
reproductive lives. New research shows that in many women the risk of 
seizure occurrence varies according to hormonal status and that the 
mechanisms involved in epilepsy may reduce fertility as well as affect 
endocrine and other functions.
    Research must address the relationship between women's seizures and 
the hormonal cycle. Despite the need for further answers to this 
problematic relationship, the role of hormones in epilepsy has received 
little systematic investigation. Research on epilepsy and women can 
lead to a cure or amelioration of symptoms.
                   epilepsy in the elderly population
    As the population in the United States ages, the number of elderly 
people with incapacitating seizures, and their costs to society, is 
also increasing. Currently, it is estimated that 61,000 new cases of 
epilepsy occur each year among elderly Americans. Stroke, 
cardiovascular disease, brain tumors and Alzheimer's disease are all 
causes of epilepsy among people over age 65. However, the cause of 
epilepsy in the majority of cases remains unknown. Understanding the 
mechanisms and factors that affect the development of seizures in the 
elderly will lead to preventing epilepsy in this age group and to other 
discoveries regarding treatment and cure.
Antiepileptic drug development
    One area of great clinical importance to people with epilepsy has 
been the development of new antiepileptic drugs. Soon, more than a 
dozen new products and treatment options will be available. The 
Foundation recommends research support from the NINDS for comparative 
trials of antiepileptic drugs to allow the clinician to make rational 
choices for their patients and to assure that their patients with 
seizures receive the greatest possible benefit from these newly 
available medications.
Epilepsy surgery
    For many persons with epilepsy, surgery has successfully reduced or 
eliminated their seizures. New technology allows the surgeon to ``map'' 
the seizure focus as well as healthy brain tissue. This allows the 
surgeon to remove the abnormal region (the area of the brain where the 
seizure originates) while sparing critically functional brain regions. 
Technologies of laser surgery, ultrasonic surgery, and tissue removal 
by high-energy radiation beams are now available as options in selected 
cases. Additional research is needed to determine how people--
particularly children--should be screened and selected for surgery.
Brain injury and epilepsy
    Another area of current research focuses on what happens to the 
brain when it is injured. Recent studies suggest that seizure-induced 
brain damage may lead to a chronic epileptic state. Drugs and therapies 
are needed to promote brain cell survival and to prevent seizures from 
producing more seizures. Research is also needed to determine why 
repeated seizures cause brain injury and more severe seizures in some 
people, but not in others.
Advances in neuroimaging techniques
    Recent advances in neuroimaging allow scientists to see in detail 
the internal structures of the brain. Emerging techniques now permit 
the investigator to observe chemical changes in brain tissue leading up 
to and during a seizure. These techniques will allow significant 
progress to be made in pinpointing the causes of epilepsy and possibly 
identify a cure. Progress in imaging techniques may allow scientists to 
accurately predict seizure occurrence in high-risk patients and 
intervene.
Gene identification
    One area of research that holds great promise is the identification 
of the genes responsible for predisposition to certain types of 
epilepsy. Research has identified several genes for childhood 
epilepsies in the last few years. Gene identification can allow doctors 
to predict whether an individual or his children are likely to develop 
epilepsy. In addition, gene identification can also help to isolate the 
missing critical protein in the deficient gene. In combination with 
advances in gene therapy, this genetic approach will allow replacement 
of the missing protein or repair of the gene. Such advances will not 
only suppress seizures, but will cure this type of epilepsy.
                  fiscal 2000 funding recommendations
    The Epilepsy Branch within the National Institute for Neurological 
Disorders and Stroke is vital to continuing the fight against epilepsy 
and currently funds many valuable projects. The promise of future 
breakthroughs in epilepsy research can only be achieved through 
increased funding for epilepsy research and prevention programs. The 
Foundation urges Congress to increase the federal commitment to 
epilepsy research by allocating sufficient funding for the NINDS and 
Centers for Disease Control.
    National Institutes of Health.--The Foundation supports 
Congressional efforts to double the NIH budget over 5 years and is 
seeking a 15 percent increase for fiscal 2000 ($17.9 billion).
    National Institute for Neurological Disorders and Stroke.--The 
Foundation supports a 15 percent increase for NINDS in fiscal 2000 
($916.5 million), consistent with the efforts to double NIH research 
funding over 5 years.
    Epilepsy Medical Research.--The Foundation urges Congress to 
support a major expansion of epilepsy research within NINDS. In 1998, 
NINDS spent $63.8 million dollars on epilepsy research. We are seeking 
a commitment to triple that amount over the next few years.
              centers for disease control epilepsy program
    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, the epilepsy program targets its outreach and education 
efforts on consumers, health professionals, and health systems 
including managed care plans and Medicaid.
    With one in ten Americans likely to experience a seizure in their 
lifetime, epilepsy represents a major public health problem. To attack 
this problem effectively, the public health community must work with 
the epilepsy community to develop strategies for preventing epilepsy as 
well as strategies for overcoming barriers to optimal health and 
function for persons with epilepsy. A corresponding national public 
health campaign must be waged to support and enhance these efforts.
    Recently, the CDC, in partnership with the Epilepsy Foundation, the 
National Association of Epilepsy Centers, and the American Epilepsy 
Society, sponsored a conference to set objectives for improving the 
health of persons with seizure disorders. The conference brought 
together experts in the field of epilepsy treatment and research 
together with patients and families affected by epilepsy and seizure 
disorders. Recommendations were developed in the areas of early 
detection and treatment, epidemiology and surveillance, and health 
communication strategies. Together, these recommendations will move our 
nation much further in reducing the public health burden imposed by 
this disorder.
    CDC Epilepsy Program.--We cannot achieve the objectives of the 
conference with the current level of funding, approximately $700,000. 
Thus, we recommend a modest federal investment of $5 million as the 
first step in implementing the recommendations from the conference.
                                 ______
                                 
          Prepared Statement of the American Heart Association
                            you are a target
    Chances are heart attack or stroke will be the death or disabler of 
you or a loved one. You are not alone. Heart attack, stroke and other 
cardiovascular diseases remain America's No. 1 killer and a main cause 
of serious disability. Cardiovascular diseases account for nearly 1 of 
every 2 deaths in the U.S.
    The American Heart Association is dedicated to reducing death and 
disability from heart attack, stroke and other cardiovascular diseases. 
We commend this Committee's historic fiscal year 1999 funding increases 
for the National Institutes of Health and the Centers for Disease 
Control and Prevention. But, we are concerned that our government is 
not devoting sufficient resources for research and prevention of 
America's No. 1 killer--heart disease--and to our country's No. 3 
killer and a leading disabler--stroke.
                     how you can make a difference
    Now is the time to capitalize on progress in understanding heart 
attack, stroke and other cardiovascular diseases. Promising, cost 
effective breakthroughs in research and prevention are on the horizon. 
We challenge our government to continue increases to double funding by 
year 2003 for NIH heart and stroke research and to translate research 
into effective clinical and community initiatives. This will help cut 
health care costs and improve quality of life. For fiscal year 2000 we 
urge you to do the following.
  --Appropriate a 15 percent increase over fiscal year 1999 funding for 
        the overall NIH, the next step toward the goal of doubling the 
        budget by year 2003. This goal is echoed by groups such as 
        Research!America and the Ad Hoc Group for Medical Research 
        Funding.
    NIH research provides cutting-edge treatment and prevention 
strategies, cuts health care costs, creates jobs and maintains 
America's status as the world leader in biotechnology and 
pharmaceuticals industries.
  --Provide a 15 percent increase over fiscal year 1999 funding for NIH 
        heart research and stroke research.
    Heart and stroke researchers are on the brink of advances that 
could pave the way to prevention and even a cure so you or a loved one 
will be spared pain and suffering from heart disease and stroke.
  --Allocate $45 million to expand the CDC Cardiovascular Health 
        Program.
    We must make our science real and applicable through community 
interventions that encourage Americans to make heart healthful 
lifestyle choices.
                              still no. 1
    Heart attack, stroke and other cardiovascular diseases have been 
America's No. 1 killer since 1919. Nearly 60 million Americans of all 
ages suffer from one or more of these diseases. Millions of Americans 
have major risk factors for these diseases--about 50 million have high 
blood pressure, 39 million have elevated blood cholesterol (240 mg/dL) 
and 48 million smoke. As the baby boomers age, the number of Americans 
afflicted by these often disabling diseases will increase 
substantially. Cardiovascular diseases put an enormous burden on our 
economy. Americans will pay an estimated $287 billion for 
cardiovascular medical costs and lost productivity in 1999. These 
diseases constitute 4 of the top 5 hospital costs for all payers, 
excluding childbirth and its complications, and 4 of the top 5 Medicare 
hospital costs. Heart disease is the leading cause of premature, 
permanent disability among American workers, accounting for nearly 20 
percent of Social Security disability allowances.
            heart and stroke research benefits all americans
    Thanks to advances in addressing risk factors and in treating 
cardiovascular diseases, more Americans are surviving heart attack and 
stroke. Heart and stroke research and prevention breakthroughs are 
saving and improving lives of your friends and those you love every 
day. You and your family have benefited directly from heart and stroke 
research. Several cutting-edge examples follow.
  --Emergency Cardiac Care.--Each day about 685 Americans suffer sudden 
        cardiac arrest. A particular sequence of actions known as the 
        ``chain of survival'' offers hope for these people. Early use 
        of both breathing and chest compression techniques of 
        cardiopulmonary resuscitation and delivery of a powerful 
        electrical shock to re-start the heart are critical to restore 
        life. Each minute of delay in returning the heart to its normal 
        pattern decreases chance of survival by 10 percent. The AHA's 
        Operation Heartbeat Program, alone, estimates that 100,000 
        lives can be saved if automatic external defibrillators (AEDs) 
        were more widely available.
  --New Surgical Heart Techniques.--Research has revolutionized 
        surgical techniques in cardiology. You probably know someone 
        who has benefited from research breakthroughs called heart 
        bypass surgery and percutaneous transluminal coronary 
        angioplasty (PTCA). Patients who experience conventional bypass 
        surgery to improve blood flow to the heart require several 
        weeks to recover. Those who experience the new ``keyhole'' or 
        ``minimally invasive heart bypass surgery'' need only several 
        recovery days. Surgeons operate via a three-inch incision. 
        Keyhole surgery can provide an alternative for the growing 
        number of Americans who endure the traditional surgery to 
        eliminate chest pain, increase ability to exercise and reduce 
        fatigue and need for medicine. In 1996, about 843,000 patients 
        benefited from bypass surgery and PTCA to improve blood supply 
        to the heart.
  --Surgery to Reduce Risk for Stroke.--When the main artery to the 
        brain becomes blocked, in many cases surgeons now can remove 
        the buildup of plaque to prevent stroke. It benefits not only 
        stroke survivors, but also helps some patients who experience 
        early stroke symptoms and may help prevent stroke in some 
        patients.
  --State-of-the Art Life-extending drugs.--Research has produced 
        amazing new drugs to help prevent and treat heart attack and 
        stroke. Cutting-edge drugs to control blood pressure and 
        cholesterol are more effective than ever in saving lives and 
        enhancing life quality of millions of Americans. Revolutionary 
        ``clotbuster'' drugs can reduce disability from heart attack 
        and stroke by dissolving blood clots causing the attack. Use of 
        t-PA within three hours of the onset of a stroke, can stop 
        progression of clot-caused stroke and reduce chances of 
        permanent disability by 33 percent, saving health care costs. 
        T-PA offers hope for the estimated 1.1 million Americans who 
        are expected to suffer a heart attack and 450,000 at risk of a 
        clot-caused stroke in 1999.
    So Americans can continue to benefit from these types of 
breakthroughs, we support doubling of the overall NIH budget by year 
2003. The AHA recommends an fiscal year 2000 appropriation of $18 
billion for the NIH as the next step toward that goal. AHA has a 
special interest in individual NIH institutes that relate directly to 
our mission. Our funding recommendations for these institutes and 
programs follow.
         heart research challenges and opportunities for nhlbi
    These aforementioned advances and other achievements have been made 
possible by more than 50 years of AHA-sponsored research and more than 
a half-century of investment by Congress in the National Heart, Lung, 
and Blood Institute. Thanks to research, no longer does a heart attack 
or stroke necessarily mean immediate death. But they can mean permanent 
disability, requiring costly medical care and loss of productivity and 
quality of life.
    The AHA urges this Committee to double the NHLBI budget by year 
2003. As the next step toward reaching this goal, we recommend an 
fiscal year 2000 appropriation of $2.051 billion for the NHLBI, with 
$1.216 billion for heart and stroke-related research. A funding level 
of this amount will allow NHLBI to expand existing programs and invest 
in promising new initiatives. Several challenges and opportunities 
follow.
  --Congestive heart failure.--About 4.6 million Americans suffer from 
        congestive heart failure. This often-disabling condition 
        remains America's fastest growing heart disease. It is the main 
        cause of hospitalization for those ages 65 and older. During 
        the past 18 years, hospitalizations for this condition have 
        more than doubled. For many, relatively simple tasks like 
        making the bed or preparing breakfast can be so fatiguing that 
        the rest of the day has to be spent in bed. A heart transplant 
        is the only lifesaving therapy for patients with advanced heart 
        failure. More research is essential to understand how and why 
        the disease occurs and how it can be treated and prevented. 
        Promising areas need more study. These include mechanical 
        assist devices; use of animal hearts for transplant; transplant 
        of healthy heart cells and the role of programmed cell death in 
        development of congestive heart failure. Increased funding 
        could lead to new methods for treatment and prevention.
  --Angiogenesis or control of new blood vessel growth.--In the next 
        century many of the 21 million Americans with heart disease may 
        be routinely treated with a genetically engineered therapy that 
        stimulates growth of new heart blood vessels. Creating a 
        ``natural bypass,'' these new vessels would help restore blood 
        flow to the hearts of people whose arteries are obstructed by 
        fat-laden plaque. Angiogenesis may become an adjunct to other 
        therapies for heart disease, including low saturated fat diets, 
        exercise, smoking cessation, and, if appropriate, medications 
        such as cholesterol-lowering drugs and surgical procedures of 
        heart bypass surgery and angioplasty. This exciting new 
        technique could provide an alternative for patients who cannot 
        endure conventional bypass surgery. Recent research suggests 
        that blocking growth of certain tiny arteries through similar 
        techniques may slow plaque growth. But, more funding is needed 
        to support research to design approaches to translate knowledge 
        of angiogenesis for use in preclinical studies and clinical 
        applications.
  --Advanced Non-Surgical Imaging Technology.--An estimated 1.1 million 
        Americans will suffer a heart attack and about 600,000 will 
        suffer a stroke in 1999. Most of these heart attacks and 
        strokes will be triggered by blood clots unleashed by plaque 
        obstructions in blood vessels. The clots, which are formed when 
        the plaque obstructions rupture, block blood flow to the heart 
        and brain, causing a heart attack or stroke. In 1998 scientists 
        described preliminary findings on how magnetic resonance 
        imaging (MRI) can detect these high-risk plaque obstructions. 
        If this technology proves effective in identifying unstable 
        plaque obstructions in blood vessels, it will provide a new way 
        for cardiologists to diagnose people at high risk of suffering 
        a heart attack or stroke and to start treatment to help 
        stabilize the obstruction or reduce chances that a blood clot 
        will form if a plaque ruptures. Other areas of cardiology could 
        benefit from this technology, including guiding local 
        injections for angiogenesis, tracking and delivering modified 
        cells in the blood vessel system and performing biopsies. 
        Increased funding in this area could revolutionize the approach 
        to patient care.
  --Heart attack, stroke and other cardiovascular diseases in women.--
        Cardiovascular diseases are a main cause of disability and the 
        No. 1 killer of American females, killing more than 500,000 
        each year. These diseases kill more females than the next 16 
        causes of death combined. They kill more females than males. 
        More than 1 in 5 females live with consequences of 
        cardiovascular diseases. The clinical course of cardiovascular 
        disease is different in women than in men and diagnostic 
        capabilities are less accurate in women than in men. Once a 
        woman develops a cardiovascular disease, she is more likely 
        than a man to have continuing health problems and is more 
        likely to die from it. These diseases are largely unrecognized 
        by both women and their doctors. Additional funding is needed 
        to allow the NHLBI to expand research on cardiovascular 
        diseases in women, including studies to develop safe, efficient 
        and cost-effective diagnostic approaches for women, and to 
        create informational and educational programs for patients and 
        health care providers on cardiovascular diseases risk factors 
        as authorized under Public Law 105-340, the Women's Health 
        Research and Prevention Amendments of 1998.
         stroke research challenges and opportunities for ninds
    Stroke is a major cause of permanent disability and America's No. 3 
killer. America's estimated 4.4 million stroke survivors often face 
debilitating physical and mental impairment, emotional distress and 
overwhelming medical costs. About 20 percent required help walking and 
71 percent had impaired capacity to work when examined an average of 
seven years later. An estimated 600,000 Americans will suffer a stroke 
in 1999. Considered a disease that strikes our grandparents, stroke 
also afflicts newborns, children and young adults. More Americans are 
dying from stroke than ever before.
    We urge a doubling of the stroke research budget through the 
National Institute of Neurological Disorders and Stroke by year 2003. 
An fiscal year 2000 appropriation of $1.034 billion for the NINDS, with 
$111 million for stroke research, the next step toward the goal, will 
allow NINDS to expand studies and start new research to prevent stroke, 
protect the brain during stroke and enhance rehabilitation. Some 
challenges and opportunities follow.
  --Brain imaging.--Imaging plays a critical role in evaluating stroke 
        patients, providing non-invasive diagnosis, treatment 
        assessment and prediction of recovery. Research is required to 
        combine knowledge from diverse imaging techniques to enhance 
        data on brain activity. Resources are needed to develop imaging 
        to quickly diagnose some 450,000 stroke patients a year who may 
        benefit from t-PA. Refined imaging technology has broad 
        application for other brain disorders.
  --Genetics of Stroke.--Stroke often has a genetic element. Research 
        has identified a gene linked to stroke caused by a blockage. 
        Other studies have identified genetic risk factors associated 
        with stroke. More funding is needed to learn ways to stop 
        mechanisms used by defective genes to cause stroke.
  --Stroke Clinical Trials.--Basic research has progressed to the point 
        where clinical studies are crucial in advancing the prevention 
        and treatment of stroke. Clinical trials are investigating drug 
        therapies and surgical interventions and assessing the needs of 
        special populations at high risk of stroke. Increased funding 
        for clinical trials could produce cutting-edge stroke treatment 
        and prevention.
  --New Stroke Drugs.--Increasingly, promising new medications to treat 
        stroke will become ready for evaluation in patients. They 
        include drugs to restore blood flow to the brain, protect cells 
        from dying when stroke is in progress and prevent injury when 
        blood flow is restored. Increased resources are critically 
        needed to improve and test these drugs in the treatment of 
        stroke.
  --Public and Professional Education for Stroke Treatment.--T-PA is 
        the first effective emergency treatment for clot-caused stroke. 
        The AHA and eight other national organizations are working with 
        the NINDS to increase public awareness of stroke symptoms and 
        appropriate emergency action. They are also striving to develop 
        systems to make t-PA readily available to appropriate patients. 
        When these systems are fully implemented, stroke treatment will 
        change from supportive care to early brain-saving intervention. 
        More funding is urgently needed to address challenges in 
        educating the public about stroke symptoms and the need for 
        prompt treatment and in assuring appropriate response systems 
        are in place in communities. More health care professionals 
        must be educated about t-PA and the need for rapid response.
  research in other nih institutes and centers benefits heart & stroke
    National Institute on Aging defines how the aging process 
contributes to cardiovascular diseases, a main disabler and No. 1 
killer of older Americans. An fiscal year 2000 appropriation of $50.6 
million for cardiovascular research will allow continuation of studies 
and expansion into promising areas.
    National Institute of Diabetes and Digestive and Kidney Diseases 
studies help in reducing cardiovascular disease death and disability. 
We advocate an fiscal year 2000 appropriation of $1.15 billion for the 
NIDDK to advance research to help diabetics, \2/3\ of whom will die 
from heart disease or stroke.
    National Institute of Nursing Research studies play a key role in 
promoting self-care and patient education. NINR research is critical to 
primary and secondary prevention of heart attack, stroke and other 
cardiovascular diseases. We advocate an fiscal year 2000 appropriation 
of $80.6 million for the NINR.
    Animal research is critical for heart and stroke research. AHA 
supports an fiscal year 2000 appropriation of $638.041 million for the 
National Center for Research Resources to help institutions and 
researchers obtain animals and provide humane care for them. Increased 
resources will fortify animal research, help correct deficiencies in 
research animal resources and strengthen nationwide Clinical Research 
Area Centers and Biomedical Technology and Infrastructure Areas.
               agency for health care policy and research
    AHCPR plays a key role through establishment of practice guidelines 
and conduction of outcomes research. Practice guidelines and outcomes 
research help insure that high quality and cost-effective medical 
services are provided. Their guidelines on stroke rehabilitation have 
received important attention from practitioners. We concur with the 
Friends of AHCPR's recommendation of an fiscal year 2000 appropriation 
of $225 million for the AHCPR.
               centers for disease control and prevention
    Prevention is the best way to protect health of Americans and 
lessen the enormous financial burden of disease. Your commitment cannot 
stop at the laboratory door. You must fund the work that brings 
research into the places where heart disease and stroke live--the towns 
and neighborhoods that populate America.
    The CDC builds the bridge between what we learn in the lab and how 
we live in our communities. CDC sets the pace on prevention. The AHA 
recommends an fiscal year 2000 appropriation of $3.4 billion for the 
CDC.
    As a result of the efforts of this Committee, CDC's Cardiovascular 
Health Program began in fiscal year 1998 with 8 states now receiving 
funds to implement state-based cardiovascular disease prevention and 
control programs. In 1997, CDC released a report outlining what the 
nation's priorities should be in the area of chronic disease 
prevention. The report titled, ``Unrealized Prevention Opportunities: 
Reducing the Health and Economic Burden of Chronic Disease,'' said 
``strong chronic disease prevention programs should be in place in 
every state to target the leading causes of death and disability . . . 
and their principal risk factors.'' Until the fiscal year 1998 
appropriations initiated a comprehensive Cardiovascular Health Program, 
the CDC-administered Preventive Health and Health Services Block Grant 
was the only source of federal funding to states for targeting the No. 
1 killer in every state.
    Steps taken to create the Cardiovascular Health Program delight the 
AHA. An fiscal year 2000 appropriation of $45 million for the 
Cardiovascular Health Program will allow CDC to expand this program to 
14 more states and to further strengthen the foundation for a 
nationwide program.
    The WISEWOMAN Program uses the framework of CDC's National Breast 
and Cervical Cancer Early Detection Program to screen women for 
cardiovascular disease risk factors. An appropriation of $15 million 
will allow CDC to support up to 13 states for participation in 
WISEWOMAN.
    The Preventive Health and Health Services Block Grant has been a 
vital resource for states in their efforts to fight heart disease and 
stroke. The AHA recommends an fiscal year 2000 appropriation of $255 
million for the PHHSBG. We urge the Committee to address, as the 
``Unrealized Prevention Opportunities'' points out, the need to target 
risk factors. The AHA supports CDC's efforts to build:
  --a comprehensive nutrition and physical activity program with an 
        appropriation of $15 million;
  --a national program to prevent tobacco use, including a national 
        public education campaign to reduce youth access to tobacco 
        products, through the CDC's Office of Smoking and Health with 
        an fiscal year 2000 appropriation of $242.5 million; and
  --a comprehensive school health education program with an 
        appropriation of $25 million.
    Coupled with a nationwide Cardiovascular Health Program, these 
initiatives will advance the fight against heart disease and stroke. We 
urge you to make cardiovascular health a national priority.
                             action needed
    Significantly increasing resources for research and community 
intervention programs will allow this nation to make great strides in 
the battle against heart attack, stroke and other cardiovascular 
diseases. Our government's response to this challenge will help define 
the health and well being of our citizens--including your constituents, 
yourself and those you love--into the next century.
                                 ______
                                 
              Prepared Statement of John D. Aquilino, Jr.
    On behalf of my son, John, his five-year-old brother, Tommy, our 
family and friends, I want to thank the Chairman and members of the 
subcommittee for allowing me to submit testimony in support of funding 
of the National Heart, Lung, and Blood Institute and it's on-going 
heart-research programs.
    As you have heard and will continue to hear until the men and women 
working in this field conquer the many complex problems in this area, 
physical problems of the heart are and continue to be the number one 
killer of our people and the cause of or most common birth defect.
    I repeat the never too often repeated message that heart disease is 
a major problem, not only with our age group, but also with our 
children.
    Congenital heart defects are the major cause of birth-related 
infant deaths in the United States affecting 32,000 newborns each year. 
Of that number more than 2,300 babies die before their first birthday. 
And one million Americans like my son, Johnny, lives with its 
consequences.
    Johnny is nine years old now. He finished his first basketball 
season and is getting ready for coach-pitch baseball at St. Jerome's 
School in Hyattsville, Maryland. He is, I believe, the oldest child in 
this area and maybe the East Coast with hypoplastic left heart. His 
left ventricle, the major pumping chamber in his heart, never formed.
    I'd like to say from the start the Johnny and I thank your for your 
leadership and support for funding NIH and NHLBI. While NHLBI's funding 
decreased by 2.3 percent in constant dollars from fiscal year 1988 to 
fiscal year 1998, I ask that you follow the American Heart Association 
recommendation of putting $2.05 billion dollars into the Institute and 
doubling NIH's funding by the year 2003.
    This support is critical. I live for the day when the work of men 
and women at the Institute allow my son to clone a new healthy heart 
from his own DNA. I will not slow my advocacy for this research until 
that and similar research applications are available to all children no 
mater their land or origin or economic status.
    I confess that when I tell Johnny's story my eyes overflow and my 
voice cracks. Today, I want to take a slightly different approach.
    The years of standing in hope while Johnny underwent three open 
heart surgeries and other invasive procedures caused me to look to the 
fate of children beyond my son. In 1994, after my son's third open-
heart surgery, I attended the Convention on International Trade in 
Endangered Species, commonly called CITES. I listened to the plight of 
rural African villagers. I thought of Johnny's fate if we had been born 
there.
    This past March 27-30, I was in Iceland attending a meeting of 
indigenous people and nations whose traditional diets include marine 
mammals such as whales. There were native people from Washington State, 
Alaska and British Columbia. Inuits from Canada, Greenland, Russia and 
other circumpolar regions were there. Maoris from New Zealand and 
people from the Polynesian Island Kingdom of Tonga as well as 
representatives from Caribbean Island states all echoed the same 
message.
    Heart disease and diabetes are afflicting their people because 
government and international policies took the diet from them.
    Beyond that issue, my thoughts went to their children. Those born 
with conditions like Johnny's simply do not have a chance of surviving. 
And again, I thought, what if Johnny and I were born Inuits? He would 
no be here today. I would be a lone voice across the ice flows asking 
why?
    The work you are funding at NIH and the NHLBI affect us all. The 
fruits of their research will and should be the gifts to the parents 
and children of other nations and other people most truly reflective of 
our country and our heritage.
    Again, I thank you for your leadership and support.
                                 ______
                                 
                    Prepared Statement of Erin Bosch
    Mr. Chairman, honorable members of the Committee, I am honored to 
have the opportunity to speak to you today. My name is Erin Bosch. 
Today, I am here to testify on behalf of not only myself, but also, the 
32,000 children in the United States who are born with congenital heart 
defects each year.
    Most of us are aware that heart disease is the No. 1 killer and a 
leading cause of disability in adults in this nation. But few recognize 
that heart defects are the most common birth defect of the newborn. Of 
the 32,000 children born each year with heart defects, around 2,300 die 
before their first birthday. The rest of us live with the consequences 
of heart disease. Many have their lives cut short from heart failure.
    Thanks to the past funding for heart research about 1 million 
Americans born with heart defects are alive today. While we are 
grateful for each day that we are alive, we, unlike other healthy 
children, have not been able to experience what it is like to run the 
length of the soccer field without struggling for our next breath, nor 
have we experienced the thrill of scoring the winning basket for our 
school basketball team. Some of us are hardly able to walk a flight of 
steps without needing to rest.
    I was born with a genetic heart disease called Hypertrophic 
Obstructive Cardiomyopathy. This disease has caused my heart muscle to 
overgrow and block the blood flow in and out of my heart. It also 
effects the valves of my heart, causing the blood to back up in the 
wrong direction. Along with this disease comes a high risk for heart 
attack. Dangerous heart rhythms often cause sudden cardiac death.
    Two years ago in October, I was at the Mayo Clinic having open 
heart surgery. The procedure, called a septal myectomy, was designed to 
shave away a portion of the heart muscle that causes the obstruction. 
This procedure was originally pioneered at the National Institutes of 
Health's National Heart, Lung, and Blood Institute, and was my last 
resort aside from transplant for a healthier life.
    It was funding that this Committee provided that allowed this type 
of successful research. Without this funding the option of a healthier 
lifestyle would not have been possible for me. Other research dollars 
have successfully contributed to the development of pacemakers and 
intra-cardiac defibrillators that other children and I depend on. 
Current research is being forged for patients with HCM for less 
invasive therapies with hopefully long-term success. Committed research 
dollars are essential for this research to continue.
    I am one of the lucky ones. My surgery was successful and after one 
month at the Mayo Clinic I was able to return home. My struggle, 
however, is not over. My physicians only hope my heart muscle remains 
stable so no further procedures will be necessary, but they just do not 
know. There have been some advances for children like me, although many 
still die prematurely.
    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 
undiagnosed Hypertrophic Cardiomyopathy.
    Presently, there are at least 35 different types of recognized 
congenital heart defects effecting the newborn population. Some can be 
corrected surgically--others cannot yet be repaired and these children 
die. One of these children might one day be your child or grandchild.
    I have great faith in the determination of our scientific 
researchers who work day and night to find new treatment methods for 
those who suffer with illness and disease. I also have great faith in 
you as the doorkeepers of governmental funding to provide the necessary 
funds for children who have been born with heart defects.
    Thank you for the opportunity to speak with you today. I am 
confident that you will not forget me and the other young people like 
me who depend on you for funding this vital research. We too, like you, 
desire to live long, productive lives.
                                 ______
                                 
     Prepared Statement of Warren Greenberg, Chairman on Lobbying/
                  Legislation, the 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 24-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. I have 
been appointed lobbying and legislation chairperson of that group--a 
volunteer position.
    I am 55 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 17 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 nearly 960,000 Americans, about 154,000 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 
National Institutes of Health, I ask for a doubling of National Heart, 
Lung, and Blood Institute budget by year 2003. To reach this funding 
goal, I advocate a fiscal year 2000 appropriation of $2.051 billion for 
the NHLBI to help reduce further the incidence and degree of heart 
disease.
                                 ______
                                 
 Prepared Statement of Francis T. Ventre, President, Montgomery County 
                            (MD) Stroke Club
    My name is Francis T. Ventre. I am president of the Montgomery 
County [MD] Stroke Club, a nonprofit organization for stroke survivors 
and caregivers, mostly family members. This club consists of some 425 
members as well as 100 professionals--physicians, therapists, 
hospitals, retirement homes, units of government and other caregivers.
    Our members range in age from the twenties to the eighties. Some 
manifest little visible signs of stroke. Others either have lost the 
ability to speak or need assistance to walk, dress, bathe and eat. More 
than 1 million in this land have disabilities from stroke.
    Let me tell you about my stroke. I was professor of architecture 
and city planning at Virginia Tech since 1983. In 1988, Macmillan 
signed me up to write on the subject of ``building regulation'' for The 
Dictionary of Art, the 34-volume exposition with 6,700 contributors it 
was planning to publish.
    In February 1990, when I was swimming at Virginia Tech's War 
Memorial pool, I was struck with a transient ischemic attack [TIA], or 
a mini-stroke. Two days later, at North Carolina Baptist/Bowman-Gray 
Hospital in Winston-Salem, I suffered a major stroke, a ``left cerebral 
infarct in the middle cerebral artery distribution following the 
spontaneous dissection of the right internal carotid artery during an 
angiogram.'' I was left with an ``mild Broca's aphasia with verbal 
aphasia'': [or a ``language problem''] and a ``residual right 
hemiparesis,'' [or my right arm didn't work]. There was my stroke!
    I was home when I thought of the ``building regulations'' article I 
had to write, so I resumed. The Dictionary of Art came out in October, 
1996, and the New York Times Book Review came out in August 24, 1997. 
My ``building regulations''--along with two others--as cited as ``those 
sections among the most memorable precisely because they're 
unconventional, hence thought-provoking.'' That's my story!
    Stroke, the third leading cause of death in the United States, 
strikes 600,000 Americans each year, killing nearly 160,000. Stroke is 
the leading cause of permanent disability in the United States. Thanks 
to medical research, today, there are about 4.4 million stroke 
survivors in the United States and I am one of them.
    What do stroke survivors face? They face years of severe physical 
and mental impairment, loss of memory, cognitive skills, personality 
disorders, emotional distress and overwhelming medical expenses. Stroke 
will cost this nation an estimated $45 billion in medical expenses and 
lost productivity in 1999. My own expenses were $18,000 at the Bowman 
Gray Hospital in Winston-Salem plus many more thousands of dollars at 
rehabilitation, including physical therapy, occupational therapy and 
speech-language pathology and many more thousands of dollars at the 
National Rehabilitation Hospital in Washington, D.C. and the Treatment 
and Learning Center in Rockville, Maryland.
    There is one thing that I want you to know about National Institute 
of Neurological Disorders and Stroke researcher John Marler, M.D. It 
came from the November 24, 1997 copy of USA TODAY, headlined ``OVERHAUL 
URGED FOR HANDLING OF STROKES,'' upgrading stroke to a ``time-
dependent, urgent medical emergency.'' The report, ``Rapid 
Identification and Treatment of Acute Stroke,'' describes how 
physicians, emergency care personnel and the public should respond to 
the finding that a drug called tissue plasminogen activator or t-PA, 
destroys the clots that dam up arteries, restoring blood flow to the 
brain. The drug t-PA, to be effective, must be given within three hours 
of the initial symptoms. Given in time, the drug improves the patient's 
chances of having minimal or no disability by 33 percent three months 
after surviving a stroke.
    I wish that the t-PA were available in 1990.
                                 ______
                                 
                Prepared Statement of Richard E. Buzbee
    I am Dick Buzbee, of Hutchinson, Kansas, and I am one of the 
grandfathers of Anne Marie Buzbee. I'm speaking on behalf of her 
family.
    Anne Marie's mother, Sally Buzbee, is a journalist with the 
Associated Press here in Washington, D.C. Anne Marie's father, John 
Buzbee, is a foreign service officer with the State Department.
    First: I want to report how Congress' foresight in supporting heart 
research affected little Anne Marie and our family.
    Second: I will suggest that a bold emphasis on further research 
will extend national benefits even beyond the potential savings of all 
the 32,000 babies who have been born annually with heart defects. Anne 
Marie was one of those 32,000 babies in 1997. She was one of the about 
3,200 babies in 1998 who did not survive.
    However, we had 7\1/2\ months with her. Those 7\1/2\ months were 
made possible largely by Congress' commitment to research that has 
continued since 1948. Because of that research, the family knew 4 
months before her birth that Anne Marie would face profound heart, 
hand, and other physical defects.
    With that knowledge, the doctors, nurses, and other specialists at 
Georgetown, and Children's National Medical Center were able to deliver 
safely Anne Marie, and soon thereafter complete the first of what would 
be many complicated operations and tests--all made possible by federal 
research support.
    The doctors never discovered the source of her problems. But the 
National Heart, Lung, and Blood Institute continues to probe for 
answers that some day will tell us what causes congenital heart 
abnormalities.
    Anne Marie traveled a lot during her 7\1/2\ months. Much of it was 
within hospitals and going to and from hospitals. She loved to travel. 
In her stroller on the sidewalk in the Friendship Heights neighborhood, 
she delighted in looking up at the leaves, and generally insisted in 
keeping moving. But once, when her dad took her over to a neighborhood 
coffee shop, she sat patiently in the stroller next to him, contenting 
herself with her pacifier while he savored a cup of coffee and a brief, 
worry-free moment with her.
    A year ago, as the cherry trees were beginning to bloom, we bundled 
her up, and her mom and dad drove us to the Tidal Basin so she could 
take her first stroll under the cherry blossoms. However, we were so 
excited about taking her for a stroll in her stroller, that when we 
arrived at the cherry trees, we discovered we'd forgotten to pack the 
stroller. No matter. She liked to be held, too. There was no shortage 
of volunteers.
    Indeed, Anne' parents and grandparents spent many hours holding 
her, and rocking her, playing ``itsy bitsy, spider,'' and ``the wheels 
on the bus go round and round.'' Anne especially loved books. Even at 6 
and 7 months, even when she felt poor, or was in the hospital, she 
would stare at the pictures in her books---and put out her hand to turn 
the page when she wanted to see more. Especially when the book was 
about ``Bloodhound Ben.''
    We learned a lot from Anne.
    She taught us that neither medical science nor love can fix all 
problems, but love and medical science can enrich all lives with 
undying reminders--not of what might have been, but what will be, so 
long as we embrace each other today and tomorrow.
    Her family today stretches from the district here, to Half Moon Bay 
in California, and from Anchorage to Baton Rouge. We will carry a part 
of her, and she will be a part of us, for we are richer today than we 
were before we met Anne.
    That is the final point I want to make: As our family is enriched, 
so are we all collectively.
    A nation that seeks so vigorously to help little Anne with HER 
heart problems will most assuredly find that ITS collective heart has 
been strengthened, so that all of us will never again be quite the 
same.
    And with an enduring commitment to research--and the eloquence of a 
search that is worthy of America today--someday--thousands of other 
little Annes will be able to grow up and contribute to the nation that 
so confidently invested in their future.
    We will all be better for it--and not least among us the dads and 
grandads who will have many opportunities to remember to bring along 
the stroller when they take the baby for the stroll under the cherry 
blossoms.
                                 ______
                                 
  Prepared Statement of Miriam Feder, Executive Director, Dystrophic 
      Epidermolysis Bullosa Research Association of America, Inc.
    Mr. Chairman and Members of the Subcommittee: My name is Miriam 
Feder. I am the Executive Director of the Dystrophic Epidermolysis 
Bullosa Research Association (DebRA) of America. The members of DebRA 
wish to express sincere thanks to you for this opportunity to submit 
written testimony regarding the budget of the National Institute of 
Arthritis, Musculoskeletal and Skin Diseases (NIAMS).
    The families of America whose lives have been devastated by 
epidermolysis bullosa wish to thank you and the members of the 
Subcommittee for your extraordinary support of biomedical research and 
the National Institutes of Health. We are very gratified that you have 
heard our voice and very grateful for your support of a 15 percent 
increase in NIH funding for fiscal year 1999. Your continued and 
enthusiastic support for the National Institutes of Health (NIH) has 
created an environment that has produced extraordinary biomedical 
advances that will make a cure for EB possible in the near future. We 
are also grateful for the translation of the technology which is 
helping to ameliorate the pain and suffering until a cure has been 
found. These technological miracles would not be available if not for 
the basic science research funding from NIH through universities and 
independent research institutions.
    This year, DebRA joins our medical and patient colleagues in urging 
the Congress to support a second 15 percent increase for the NIH, the 
second installment of a five-year plan to double the NIH budget. A 15 
percent increase would provide $18 billion for the NIH, money that will 
be put to excellent use by scientists looking to address the many 
challenges that EB patients still face. In addition, we urge the 
Subcommittee to provide $354 million for the NIAMS in fiscal year 2000. 
The diseases investigated by this institute have a substantial impact 
on quality of life, use of health care resources, and the nation's 
economy.
    Again in 1999, I must regrettably report that too many children and 
young adults have died of the effects of EB in this past year. The 
great majority of these deaths are from metastatic skin cancer. However 
thousands of children and their families affected by EB recognize and 
are grateful to you and this committee for they will know that NIAMS 
funded EB research has made a cure for EB more than a distant dream. 
The establishment of the EB Registry in 1980 remains a model for all 
rare disease registries. It is the foundation upon which the phenomenal 
progress on EB research rests and has been cited as the success story 
clearly illustrating what NIH funding has successfully accomplished. 
The creation of this registry, with funding from NIAMS, is responsible 
for the promise of gene therapy, advancing techniques of wound healing 
and burn treatment, and understanding the mechanisms of EB blistering 
and vesicant injury.
    EB is a group of inherited disorders in which genetic defects 
produce blistering of the skin and mucous membranes and creates deep 
wounds. It is disfiguring, severely disabling and often fatal; wreaking 
dire emotional and financial costs. EB may have dire effects on many 
other systems of the body and complications including malnutrition, 
hand and joint deformities, chronic anemia and early death due to 
respiratory failure, heart failure and cancer. Many babies die before 
their first birthday.
    I would like to relate to you the story of two remarkable families 
who have been challenged by this devastating disorder.
    Dana Marquardt was born on April 27, 1971, her mother did not hear 
the anticipated ``congratulations'' because the neonatal/obstetric team 
was concentrating on the sacs of fluid which hung from the infant's 
hands and feet and the sloughing of skin from her entire tiny body. 
After three agonizing months these young parents brought their bandaged 
baby home with the mysterious diagnosis of epidermolysis bullosa (EB).
    For Dana and the thousands of other Americans affected by this 
dreadful genetic disease; the daily care consists of changing her 
bandages and draining the fluid from blisters that result from the 
slightest friction to her fragile skin. Antibiotic ointment is then 
applied to the blisters and open wounds to lessen the amount of 
infection. She then has to cover the lesions with non-stick pads and 
wrap gauze bandages around her arms, legs and some times her whole 
body. She must secure the bandages with a special tape until the next 
day or until her soaking bath then repeats the process. Dana's mother 
assists her with most of her routine because of the extent of her 
disability. Dana's father navigates the sea of red tape associated with 
denied insurance reimbursements for bandages, antibiotic ointments and 
specialized medical and surgical care.
    In Dana's own words, she describes living with EB: ``Living with 
epidermolysis bullosa is like fighting a losing battle with my own 
body. Just when I begin to notice an improvement in my skin, the war is 
declared once again and I wake up the morning with a massive breakdown 
of blisters and new lesions, only to start the process all over again. 
If my appetite begins to improve, my throat betrays me and forms a 
blister so that eating even ice cream can be extremely painful. I have 
had many hand surgeries, and all attempts to free my fingers were only 
temporarily successful and each one lasted for a shorter period of 
time. I manage quite well without fingers, but sometimes I miss the 
times when I could grab anything I wanted and not have to use two 
hands.''
    ``When I was little, I used to sit by the window and watch the 
neighborhood children play during the summer from an air-conditioned 
living room. Kids ran in and out of sprinklers, and shadows rode by my 
house on bicycles. I watched and sometimes I cried because I wished I 
cold be out there with them, but I knew it would never happen. Every 
time I couldn't play, I was reminded that even in a school program for 
the disabled, I was different. Once I got into the upper grades, it 
wasn't quite as bad but I knew I never totally fit in. EB took away my 
childhood.''
    The innovative use of newly developed bio-technology and a team of 
dedicated investigators and clinicians are helping Dana battle a deadly 
form of skin cancer.
    A mother, Marybeth Sheridan, of Tampa, Florida described her 
pregnancy as the most wonderful experience of her life however, as the 
Doctor pulled the baby from her womb they discovered that she had no 
skin on her left hand and as they touched the newly born infant, huge 
blisters formed all over her child before their very eyes. Marybeth 
recognized the fear in the doctor and nurses eyes as she was awake at 
the delivery but it did not compare to her terror when she realized 
that they did not know what was happening to her baby. If it was not 
for the National EB Registry, she may not have known what was wrong 
with her child Samantha. Now Samantha at four years old continues to be 
robbed of a carefree childhood. Her parents always have to remember 
that one touch can severely blister or denude their child's skin. It is 
very hard for a four year old to understand her limitations. The 
burning and itching from healing and then blistering again is 
unbearable for their little girl.
    Even though the horror of the experience for the child born with EB 
and its parents have not changed, today we can live with the 
encouraging knowledge that EB may be one of the first genetic disorders 
to be cured with gene therapy. It is considered the centerpiece of skin 
disease research and appears to be the most appropriate for gene 
therapy.
    NIAMS funded research in EB has already produced spectacular 
cutting-edge science and technology. Recent progress continues to 
disclose distinct mutations in all three major forms of EB and these 
discoveries have significant implications in terms of classification, 
diagnosis and management for people affected with EB. Families are 
already benefiting from this research through clinical applications 
such as DNA prenatal diagnosis during the first trimester, eliminating 
a previously used technique that could cause further damage to an 
affected baby. With this new technology the obstetric team is prepared 
for the birth of an affected child and appropriate measures can be 
taken for both mother and child to minimize additional trauma. The 
understanding of the underlying genetic basis for EB is the basis for 
the development of gene therapy approaches to reverse the 
manifestations of EB as well as approaches to other genetic skin 
disorders.
    Researchers have also uncovered an existing link between the 
molecular mechanisms leading to skin fragility in EB and the muscle 
wasting associated with a variant of muscular dystrophy and who knows 
what other associations will be uncovered through ongoing 
investigations? We are hopeful that new treatment for EB may come from 
technology that has been developed for burns and wounds whose basis 
comes from the knowledge and information that EB has provided in the 
understanding of skin biology, how the skin wounds, and why the skin 
does or does not heal.
    DebRA of America respectfully urges Congress to continue investing 
in research that will indeed create the breakthroughs that will bring 
forth the cures for crippling and devastating diseases that are costly 
and deadly for millions of Americans.
    On behalf of more than 100,000 Americans who suffer from EB, I 
again thank this Committee and Congress for the opportunity of 
submitting this testimony.
                                 ______
                                 
               Prepared Statement of Harry C. Dietz, M.D.
    Mr. Specter and members of the Subcommittee, the members of the 
Coalition for Heritable Disorders of Connective Tissue (CHDCT) thank 
you for the opportunity to provide testimony in support of the budget 
of the National Institutes of Health (NIH) and the National Institute 
of Arthritis, Musculoskeletal and Skin Diseases (NIAMS). This is the 
tenth year that the CHDCT has submitted testimony and the CHDCT is 
grateful for the Committee's on-going support of funding for NIH 
research, and most particularly their support for increased funding for 
research on rare and genetic disorders--research which might not 
otherwise have been funded.
    The CHDCT represents over 200 heritable disorders of connective 
tissue. These disorders affect several millions of the population in 
the United States. These heritable disorders of connective tissue are 
described as syndromes--genetic disorders in which the location of the 
mutation may have been identified, but for which there is yet no true 
understanding of the function of these mutations, nor an understanding 
of why the mutations result in such damage to the affected body 
systems. These are disorders for which there are no simple diagnostic 
tests, no effective therapies, nor any known cures. Because of the 
basic molecular research required to unravel the mysteries of this body 
of heritable connective tissue disorders, research will not only 
benefit those affected, but will add immeasurably to the understanding 
and knowledge of less complex, more prevalent disorders of connective 
tissue, such as osteoarthritis.
    Although we tend to think of these disorders in terms of the 
technical names by which they are categorized for the purpose of 
identity and research, the individual voices of the people affected 
reveal the desperate quality of their lives. In a letter, a young man 
writes, ``. . . I am being stalked by a killer. It's not some psycho 
lurking in the shadows, or one of the thousands of thugs loose on our 
streets. It's an insidious syndrome that is attacking the very building 
blocks that hold my body together.''
    In another, following the death of his daughter, a father writes, 
``Rachel died three months shy of her third birthday following several 
surgeries. Rachel's life was a inspiration to a great many people. 
Despite her many challenges, she always managed to have a smile for 
everyone she met along the way . . .''
    Another woman, who lost a brother, a sister and a son: ``In 
September of 1991 I learned about this killer. It was the first day of 
school for my three excited sons and the bus was just minutes from 
arriving. Suddenly, my son fell to the ground in convulsions and 
extreme pain. It took the hospital 28 hours to determine the problem--a 
four foot long tear in his aorta . . .''
    Again, a young woman of 23 dies following a visit to the emergency 
room with chest pain. Her mother remembers, ``Three years ago, my 
beautiful adult daughter died four days after being sent home from an 
emergency room with a misdiagnosis of stomach flu. . .''
    These are the voices of those who cope daily, monthly, for a life-
time, with the ignorance that still exists on how to adequately 
diagnose these syndromes, and the still inadequate treatment and 
therapies that are available. These voices compel us to look toward the 
NIH and to this Committee's support for increased research funding--
research is our only hope. Although these disorders seem strange and 
unfamiliar, there are few families in the United States who have not 
experienced a family member, a neighbor, a friend or an acquaintance 
with one of these complex, multi-system disorders that have been 
described in the seminal textbook by Victor McKusick, Heritable 
Disorders of Connective Tissue. The above quotes represent only a few 
of the myriad of people with these disorders which have an almost 
infinitely varying Rosetta Stone of mutation encoding that will 
ultimately require deciphering in order to develop effective therapies.
    The heritable connective tissue disorders represented by the 
voluntary health advocacy organizations which comprise the CHDCT are 
listed below. These are ``family'' disorders, since several members of 
a family can share the same genetic component. The names are unfamiliar 
and do not seem to apply to humans, yet for each of these scientific 
names, we can visualize thousands of affected persons, each with one's 
own experience.
    The Chondrodysplasias have had some progress. After years, the gene 
has been identified for Achondroplasia--one of the most common forms of 
dwarfism. This condition, caused by a gene mutation early in fetal 
development, occurs in one of every 20,000 births. Following upon this 
discovery was the identification of the gene mutation for diastrophic 
dwarfism, a recessive form. Additional positive research is being 
directed toward the goal of alleviating orthopedic, neurological and 
respiratory/pulmonary conditions which can be lethal and have only 
partially effective surgical interventions.
    The Ectodermal Dysplasias are a complex group of genetic disorders 
identified by the absent or deficient function of at least two 
derivatives of the ectoderm. The features of hypohidrotic ectodermal 
dysplasia, the most common form of the syndromes, are highly variable 
but generally include the inability to perspire; skin may be lightly 
pigmented, thin and prone to rashes or infections. Teeth may be missing 
or malformed; teeth which do form erupt late and may be peg-shaped or 
pointed. The eyes may be dry and occasionally may develop abrasions or 
cataracts. More than 150 syndromes have been identified with symptoms 
ranging from mild to severe.
    Ehlers-Danlos Syndrome (EDS) is a group of genetic connective 
tissue disorders. There are six identified types of EDS. Unlike lupus, 
which is the result of antigen-antibody reactions with connective 
tissue, EDS is caused by a defect within the collagen itself. EDS is 
characterized by abnormalities of the skin, ligaments and internal 
organs. Symptoms include skin that is fragile, stretchable and scars 
easily; joints that are hypermobile, joints that dislocate, are 
unstable and painful with bruising and bleeding tendencies.
    Epidermolysis Bullosa (EB) is a complex group of genetic disorders 
that disproportionately affect young children. EB causes the skin and 
mucus membranes of its victims to be so fragile that the slightest 
friction can cause blistering, shearing of skin, severe wounding and 
destruction of the skin and mucus membranes in both the 
gastrointestinal and respiratory tracts. In many cases, its symptoms 
resemble severe burns. EB can vary from relatively mild blistering to 
severe scarring, severe loss of mobility, disability and often death. 
Over 100,000 Americans are affected with some form of EB.
    Marfan Syndrome (MFS) is a heritable disorder of the connective 
tissue that affects many organ systems, including the skeleton, lungs, 
eyes, heart and blood vessels. MFS affects both men and women of any 
race or ethnic group. It is estimated that at least 200,000 people in 
the United States have MFS or a related connective tissue disorder 
within this category. Although life expectancy has increased due to 
open-heart surgery and improved surgical techniques, difficulty in 
diagnosis and the lack of effective treatments continues to have severe 
consequences.
    Osteogenesis Imperfecta (OI) is characterized by short stature and 
bones that break easily, often from little or no apparent cause. Most 
forms of OI are the result of imperfectly formed bone collagen, the 
consequence of a genetic defect. A comprehensive database has been 
developed containing extensive information on a wide variety of 
clinical features of OI and many studies are underway in the hope to 
speed the progress toward a cure.
    Pseudoxanthoma Elasticum (PXE) is an inherited disorder in which 
elastic fibers, which are normally found in the skin, retina of the 
eyes, and the cardiovascular system, become slowly calcified, producing 
changes in these three areas. Characteristic skin involvement usually 
appears on the sides of the neck and in other flexural areas, and 
appears as slightly thickened.
    Sticklers syndrome is a common pleiotropic autosomal dominant 
syndrome with the following variable manifestations: early-onset myopia 
and retinal detachment, deafness, and cleft palate. Skeletal 
manifestations are sometimes called mild spondyloepiphyseal dysplasia. 
Physique may sometimes be described as a ``marfanoid habitus,'' with 
joint hypermobility. Severely affected individuals may have mildly 
affected relatives.
    The NIAMS-sponsored Conferences for Heritable Disorders of 
Connective Tissue, held in 1990 and 1995, demonstrated the value of 
continual review of research directions. In 1995, foremost among the 
suggestions were that research should focus on the development of rapid 
and accelerated molecular diagnosis, the evaluation of various gene 
therapy approaches, the development of strategies for gene delivery, 
and the establishment of animal models. But the greatest emphasis was 
placed on continuing interdisciplinary collaborations in order to 
prevent overlap and in order to facilitate the exchange of research. A 
Third Conference, to be held in the year 2000, will again serve as an 
opportunity to adjust the direction of research and usher in the hope 
and realization of future research findings.
    While some of the heritable disorders of connective tissue are 
extremely rare, it is currently known that, as a group, they represent 
a major public health burden. It is important to appreciate that many 
common disorders involve the connective tissue and have an inherited 
component. For example, we now know that osteoarthritis and aortic 
aneurysm are bona fide members of this disease category. Aortic 
aneurysm is the cause of death for 2 percent of individuals in 
industrialized countries. The majority of individuals will have 
problems attributable to arthritis in their late adult life. These are 
but a few of many examples that underscore the importance of these 
disorders. The establishment of research centers allows the recruitment 
of geneticists, biochemists and cell biologists who will contribute 
their expertise to a common problem.
    We, who live with heritable disorders of connective tissue, look to 
the establishment and support of Scientific Research Centers which will 
serve to coordinate research advances and enable these to be translated 
rapidly to advances in patient care. This is the only way to 
comprehensively understand the clinical burden of this disorder and to 
predict manifestations of disease before they occur. In the case of 
rare, multi-system disorders, this will be the only way to bring 
together enough individuals to allow for well controlled clinical 
trials. This goal of Scientific Research Centers for heritable 
disorders of the connective tissue can only be accomplished through the 
resources of the Institutes of the National Institutes of Health.
    The CHDCT supports the AD Hoc Group for Medical Research Funding in 
their request to sustain the current momentum of research which will 
benefit all Americans. The President, the Congress, and the American 
people must continue the commitment that began last year to double the 
NIH budget by 2003. The CHDCT supports an appropriation of $18 billion 
for fiscal year 2000. This $2.3 billion (15 percent) increase 
represents the second step toward the bipartisan goal of doubling the 
NIH budget by fiscal year 2003. Funding biomedical research through the 
NIH is today's investment in America's future. The technology and the 
science are available to understand and ultimately cure or eradicate 
many of these devastating genetic disorders.
    This testimony is also available on the web site of the Coalition 
for Heritable Disorders of Connective Tissue (CHDCT) at: www.chdct.org 
or a copy can be obtained by calling 516-883-8712.
                                 ______
                                 
    Prepared Statement of John T. Grupenhoff, Ph.D., Executive Vice 
   President, National Association of Physicians for the Environment
    Mr. Chairman and members of the Committee, a remarkable opportunity 
is now available to improve the environmental soundness of the 
biomedical research enterprise, especially in terms of energy 
efficiency and pollution prevention.
    Background.--The Administration and Congress intend to increase 
funding for U.S. scientific research significantly. As for biomedical 
research, some congressional leaders seek to double funding for the 
National Institutes of Health (NIH) in the next five years; the 
increase for funding for the next fiscal year will be 14 percent. Total 
funding in those five years will be (assuming necessary increments to 
equal that total) $119 billion. In fiscal year 2005 the annual budget 
would be about $26 billion, with a continuing build-up thereafter. 
Funding for biomedical research portfolios in other Federal agencies 
will also increase. These funds will cause a major economic boom in 
non-profit biomedical research; it is to be expected that for-profit 
expenditures will increase greatly as well. Companies providing 
research equipment and supplies will participate in that expansion.
    Enormously increased expenditures at university, college, and 
independent research center campuses will occur for new construction, 
including upgrades, and new laboratory and office equipment, all with 
energy use implications. There will also be a significant increase in 
the types and volume of wastes (solid, hazardous chemical, medical 
pathological, radioactive and multihazardous) which will require 
management and appropriate disposal.
    Questions.--How can the environmental health leadership develop a 
program of pollution prevention and energy efficiency to prevent this 
enormous growth in the biomedical research enterprise from creating 
severe increases in pollution deleterious to human health and the 
environment? How can such a program have spin-off uses for other 
scientific research areas for which increased funding also will be 
available?
    Support.--Considerable support to deal with these issues is likely. 
The White House has promulgated a number of requirements for Federal 
activities regarding energy efficiency, pollution prevention, and other 
environmental issues, and will be interested in supporting this 
initiative. The National Institute of Environmental Health Sciences 
(NIEHS), an institute of the National Institutes of Health (NIH), has 
indicated its strong support for a program of improving the 
environmental soundness of the biomedical research enterprise, both 
non-profit and for-profit.
    The U.S. Senate fiscal year 1999 appropriations bill for the 
Departments of Labor-HHS-and Education included a paragraph which 
states:
    ``The Committee has learned that NIEHS is leading an effort to help 
make the medical research field more environmentally sound, by working 
with both intramural and extramural laboratories. The Committee 
strongly supports this activity as it recognizes that virtually every 
environmental or pollution problem is, or will become, a medical or 
public health problem.''
    The U.S. House of Representative's counterpart bill report stated:
    ``The Committee understands that NIEHS is working with its 
laboratories and offices to help make it more environmentally sound. 
The Committee commends NIEHS for its efforts and hopes that other 
medical and scientific research facilities will also take the necessary 
steps to become more environmentally sound.''
    Chairman John E. Porter of the House Subcommittee on Labor-HHS-
Education Appropriations commented about the impacts of such increases 
upon environmental concerns in a videotaped statement in June, 1998:
    ``This will mean much greater activity and therefore an increase in 
the kinds of waste that can be very damaging to the environment . . . 
Wouldn't it be a great irony if the healthcare industry and the 
biomedical research community in the United States ignored 
environmental matters and caused the kind of pollution that can 
adversely affect the health of our country? Obviously, it is a 
tremendous responsibility of the healthcare industry and research to 
take environmental matters into account . . . I don't think that either 
healthcare workers or biomedical researchers put this at a high enough 
priority. They need to look at the huge effect that their activities 
have on our economy and on our environment.''
    Mr. Porter noted that the NIH has taken the lead in reducing the 
use of environmentally damaging products, such as chemicals, especially 
mixed waste and mercury, and that during the past three years the 
institutes have saved several million dollars through energy efficiency 
programs. ``This is an effort that must pervade the entire research 
community,'' he said.
    National Program.--A national program should be developed which has 
four components:
    1. A national conference will be held on November 1-2, 1999 to 
highlight the issues, profile current ``best practices,'' and suggest 
methods of implementing environmentally sound practices, including 
those in the entire research supply chain, which would require each 
link in the chain, from raw material provider to manufacturer to user, 
to improve environmental performance. The conference will bring 
together leaders from Federal agencies and national associations such 
as biomedical and clinical research and related organizations; 
university and college associations (especially involving the 
Association of Higher Education Facilities Officers who plan, develop, 
construct and run buildings and facilities at 3,600 campuses); industry 
manufacturers and suppliers of pharmaceuticals, chemicals, research and 
medical supplies; waste management companies; construction and 
architectural organizations; environmental organizations; voluntary 
health organizations; and other interested organizations to be 
identified.
    2. Following the conference, a national education and training 
program to promote environmental soundness, including energy efficiency 
and pollution prevention, at campuses and facilities which receive 
biomedical research grants, combining the efforts of the researchers 
and the facility managers, should be developed.
    3. A research agenda should be developed both for the improvement 
in the use and disposal of biomedical research materials and for 
building design and construction of research facilities, including 
energy efficiency and development of standards for healthy building 
design.
    4. A clearinghouse should be created to inform the field of ``best 
practices'' available for widespread, including international, use (a 
``virtual clearinghouse'' on the Internet would be the most useful 
form). Energy efficiency and pollution prevention should be stressed.
    Timing.--Two spin-off activities are likely; many more will become 
evident during the above-proposed activities. First, as organizations 
work on these issues, it will become apparent that continuing 
collaborative efforts are needed not only to improve environmental 
soundness in basic and clinical biomedical research, but in the 
healthcare enterprise generally, and an organizational structure should 
be developed to pursue them--perhaps a ``Council of Health and Medical 
Research Professionals for the Environment,'' composed of a wide 
spectrum of healthcare and research organizations, could be created.
    Second, throughout the process there will be the potential to 
determine ``best practices,'' and to apply lessons learned and products 
developed to the nonbiomedical scientific enterprise, which will also 
experience rapid growth. A campus-based education program as described 
above should be adapted to deal with this opportunity.
    There will be many benefits of such an effort, including improved 
energy efficiency that will save money for additional research, use and 
disposal of alternative chemicals and other research materials that can 
protect workers and probably save money, and improved healthy 
workplaces for researchers.
    One additional benefit is that research teams, by participating in 
such an effort, will be taking responsibility for the protection of the 
environment as an integral part of the research, disease prevention and 
healing mission of biomedical research. If such actions are properly 
promulgated to the community where the research is done, the public 
will be assured that its environment is being protected and will look 
favorably on the researchers, on the research being done, and on the 
campus where it takes place.
    We therefore propose that bill report language come from this 
committee in support of these efforts and NAPE will be pleased to work 
with your staff to develop such language.
    Thank you for all you have done, in funding biomedical research, to 
improve the health of people worldwide.
                                 ______
                                 
     Prepared Statement of the Humane Society of the United States
    We appreciate the opportunity to provide testimony to the Labor, 
Health and Human Services, and Education Subcommittee on two funding 
items of great importance to the Humane Society of the United States 
(HSUS) and its 6.7 million members and constituents. As the largest 
animal protection organization in the country, the HSUS urges the 
Committee to address these priority issues in the fiscal year 2000 
budget.
                  class b random source animal dealers
    The HSUS urges the Committee to include report language directing 
NIH to extend its policy prohibiting the use of animals obtained from 
Class B dealers for intramural research, to the extramural research 
funded by NIH as well. Class B dealers acquire the animals they sell to 
biomedical research facilities from a variety of sources including 
``free to good home'' ads, puppy mills, animal shelters, and outright 
theft of family pets. Additionally, squalid conditions, abusive 
handling, sickly and under cared for animals, and sloppy record-keeping 
are the hallmarks of Class B dealers. As Robert A. Whitney, D.V.M. and 
former Director of both the National Center for Research Resources and 
the Office of Animal Care and Use at NIH, testified in July 1997, ``The 
continued existence of these virtually unregulatable Class B dealers 
erodes the public confidence in our commitment to appropriate 
procurement, care, and use of animals in the important research to 
better the health of both humans and animals.''
    Just six weeks ago, nine individuals were convicted of charges 
related to the theft of pets for sale to research laboratories. The 
leader of the group was a USDA licensed Class B dealer who has sold 
hundreds of dogs to research facilities including the University of 
Southern California, Cedars Sinai Medical Center, and the Seattle 
Institute of Biomedical and Clinical Research, which collectively 
received over $114,000,000 in funding from NIH in fiscal year 1998. 
Taxpayers funds should not be used to purchase stolen animals.
    We commend NIH for its policy prohibiting the use of animals 
obtained from Class B dealers in intramural research. NIH should 
exercise the same caution and concern with respect to its grant 
recipients. Extending this sound policy to the extramural research 
program will assure the public that animals purchased with government 
funds have not been stolen from their families.
                          chimpanzee sanctuary
    Laboratories in the United States currently support hundreds of 
chimpanzees no longer needed for experimental medical research 
purposes. Establishing permanent sanctuaries is the most cost-effective 
and humane solution to this problem, and one which requires a public/
private partnership. The HSUS is pleased to join forces on this request 
with a broad coalition of experts in the care and management of captive 
and wild chimpanzees, including research, animal protection, zoo, and 
sanctuary representatives (please see list below).
    Sufficient similarities exist between chimpanzees and human beings 
that the chimpanzee has served as a human surrogate in research in the 
United States since the mid 1950s. Since then, chimpanzees have been 
bred extensively for use in many types of research, including space 
research, the development of infectious disease vaccines, biomedical/
biobehavioral studies, and cognitive research. In the mid 1980s, an 
initial investigation indicated that chimpanzees might serve as a 
vehicle to understand the human immunodeficiency virus (HIV). A 
breeding program was established to assure sufficient numbers of 
chimpanzees to meet the research requirements. It has become clear, ten 
years later, that there are large numbers of unneeded chimpanzees in 
laboratories due to the success of the chimpanzee breeding program, a 
decreased need in biomedical research, the ethical considerations posed 
by such research, and the high cost of maintenance. Currently, there 
are estimated to be several hundred chimpanzees no longer needed in 
biomedical research and the numbers are anticipated to grow.
    In response to the perceived oversupply of chimpanzees in 
laboratories and anticipating a need for a new management plan, the 
National Research Council was asked in 1994 to address these issues:
  --The size of the breeding colony required to support future research 
        needs
  --Issues of ownership, long-term care, and use in research
  --Mechanisms by which non-governmental organizations could assist in 
        achieving appropriate goals and solutions for the long-term 
        care of chimpanzees
    Among the recommendations of the NRC's 1997 report, ``Chimpanzees 
in Research --Strategies for Their Ethical Care, Management, and Use,'' 
were:
  --A five year breeding moratorium (1997-2001) should be adopted
  --Euthanasia should not be considered as a management option
  --Sanctuaries should be established
    Housing and maintaining chimpanzees in laboratories is a costly 
process, and poses management problems, including significant 
challenges in providing captive-bred chimpanzees with appropriate 
living conditions. Currently, NIH is supporting more than 600 
chimpanzees at a cost of between $15 and $30 per day per individual. 
These chimpanzees can be maintained in better environments at a far 
lower cost in a sanctuary setting, where they would be allowed to live 
the remainder of their natural lives without further invasive research 
or return to a laboratory. Sanctuaries designed and maintained by 
experts in the care and management of this species are the appropriate 
solution to the problem of lifetime care for unneeded chimpanzees, as 
recommended in the NRC report and by other experts.
    We urge the Committee to provide $12.5 million in fiscal year 2000 
to construct a model sanctuary facility that can begin to address the 
serious problem of unneeded chimpanzees currently housed in 
laboratories. We respectfully recommend that these funds be allocated 
as follows: $9.5 million for the initial construction of a sanctuary 
facility for 300 chimpanzees; $1.5 million for operating expenses in 
the first year (e.g. to purchase start-up equipment and supplies, and 
hire initial staff); $1 million to provide interim support for 
chimpanzees awaiting retirement; and $450,000 for administration and 
oversight of this program by the NIH. For fiscal year 2001 and years 
thereafter, we also suggest funding of at least $1.5 million for 
operating costs and $450,000 for administration of this program by NIH, 
plus whatever new funds will be required to take care of additional 
chimpanzees that are found to be surplus to NIH's requirements.
    The HSUS appreciates the Committee's attention to this pressing 
concern, and is pleased to submit this request for funding of a model 
chimpanzee sanctuary on behalf of HSUS President and CEO, Paul Irwin, 
HSUS Senior Vice President for Research, Education and International 
Issues, Dr. Andrew Rowan, and the following 44 coalition members:
    Dr. Kate Baker, Research Associate.--Yerkes Regional Primate 
Research Center, Emory University (Atlanta, GA)
    Alan Berger, Executive Director.--Animal Protection Institute 
(Sacramento, CA)
    Dr. Tammie Bettinger, Coordinator of Scientific Studies.--Cleveland 
Metroparks Zoo (Cleveland, OH)
    Dr. Mollie Bloomsmith, Director of Research and Director of 
TECHlab.--Zoo Atlanta (Atlanta, GA); Affiliate Scientist.--Yerkes 
Regional Primate Research Center, Emory University (Atlanta, GA)
    Dr. Sarah Boysen, Director of Primate Cognition Project and 
Associate Professor of Comparative Psychology.--Ohio State University 
(Columbus, OH)
    Dr. Linda Brent, President.--Chimp Haven, Inc. (San Antonio, TX)
    Dr. Thomas Butler, Chairman, Department of Laboratory Animal 
Medicine.--Southwest Foundation for Biomedical Research (San Antonio, 
TX); Member, National Research Council Committee that produced 1997 
Report, Chimpanzees in Research: Strategies for Their Ethical Care, 
Management, and Use
    Cindy Carroccio, Director.--Austin Zoo (Austin, TX)
    Peggy Cunniff, Executive Director.--National Anti-Vivisection 
Society (Chicago, IL headquarters)
    Dr. Philip Davies, Executive Director, Immunology & Rheumatology.--
Merck & Co., Inc. (Rahway, NJ); Member, National Research Council 
Committee that produced 1997 Report, Chimpanzees in Research: 
Strategies for Their Ethical Care, Management, and Use
    Dr. Frans de Waal, Chandler Professor of Primate Behavior, 
Psychology Department, and Director of LIVING LINKS CENTER.--Yerkes 
Regional Primate Research Center, Emory University (Atlanta, GA)
    Adele Douglass, Director.--American Humane Association (D.C. 
headquarters)
    Dr. Stephen Easley, Director.--Easley and Associates, Professional 
Consultants (Alamorgordo, NM)
    Jo Fritz, Director.--Primate Foundation of Arizona (Mesa, AZ); 
Member, National Research Council Committee that produced 1997 Report, 
Chimpanzees in Research: Strategies for Their Ethical Care, Management, 
and Use
    Dr. Randy Fulk, Curator of Research and Species Coordinator for the 
Chimpanzee Species Survival Plan.--North Carolina Zoo (Asheboro, NC)
    Dr. William Hopkins, Professor of Psychology.--Berry College (Rome, 
GA); Research Associate--Yerkes Regional Primate Research Center, Emory 
University (Atlanta, GA)
    Dr. Thomas Insel, Director.--Yerkes Regional Primate Research 
Center, Emory University (Atlanta, GA)
    Dr. Michael Kastello, Executive Director, Research Resources.--
Merck & Co., Inc. (Rahway, NJ)
    Dr. Michale Keeling, Professor and Chairman, Department of 
Veterinary Sciences.--University of Texas M.D. Anderson Cancer Center 
(Bastrop, TX)
    Dr. James King, Professor of Psychology--University of Arizona 
(Tucson, AZ)
    Linda Koebner, Executive Director.--Chimp Haven, Inc. (New York 
City, NY)
    Dr. Virginia Landau, Staff Primatologist.--Jane Goodall Institute 
(Silver Spring, MD); Director--Chimpan Zoo (Tucson, AZ)
    Debbie Leahy, President.--Illinois Animal Action (Warrenville, IL)
    Dr. Terry Maple, President.--American Zoo and Aquarium Association 
(Silver Spring, MD); President and CEO--Zoo Atlanta (Atlanta, GA)
    Dr. Linda Marchant, Professor of Anthropology.--Miami University 
(Oxford, OH)
    Dr. Michele Martino, Assistant Veterinarian.--Southwest Foundation 
for Biomedical Research (San Antonio, TX)
    Dr. Preston Marx, Senior Scientist.--Aaron Diamond AIDS Research 
Center (New York City, NY headquarters); Professor of Tropical 
Medicine--Tulane Regional Primate Research Center; and Tulane School of 
Public Health and Tropical Medicine (Covington, LA)
    Dr. William McGrew, Professor of Zoology.--Miami University 
(Oxford, OH)
    Dr. Robert Mitchell, Associate Professor of Psychology.--Eastern 
Kentucky University (Richmond, KY)
    Tina Nelson, Executive Director.--American Anti-Vivisection Society 
(Jenkinstown, PA) Barbara Newell, Esq.--Animal Legal Defense Fund; 
Great Ape Legal Project (Rockville, MD)
    Dr. F. Barbara Orlans, Senior Research Fellow.--Kennedy Institute 
of Ethics, Georgetown University (Washington, D.C.)
    Ingrid Porton, Mammal Curator/Primates.--Saint Louis Zoological 
Park (St. Louis, MO)
    Patti Ragan, Director.--Center for Orangutan & Chimpanzee 
Conservation (Wauchula, FL)
    Dr. Thomas Jefferson Rowell, Director.--University of Southwestern 
Louisiana, New Iberia Research Center (New Iberia, LA)
    Dr. Duane Rumbaugh, Director.--Language Research Center, Georgia 
State University (Atlanta, GA)
    Dr. Peter Theran, Vice President of Health and Hospitals 
Division.--Massachusetts Society for the Prevention of Cruelty to 
Animals (Boston, MA); Member, National Research Council Committee that 
produced 1997 Report, Chimpanzees in Research: Strategies for Their 
Ethical Care, Management, and Use
    Dr. Erna Toback.--Scientific Advisory Board of Chimp Haven, Inc. 
(Los Angeles, CA); American Society of Primatologists; University of 
Stirling (Stirling, Scotland)
    April Truitt, President.--Primate Rescue Center, Inc. 
(Nicholasville, KY)
    Dr. Paul Waldau, Vice President.--Great Ape Project International 
(Boston, MA)
    Lisa Weisberg, Esq., Vice President, Government Affairs.--American 
Society for the Prevention of Cruelty to Animals (New York City, NY)
    Steven Wise, Esq., President.--Center for the Expansion of 
Fundamental Rights, Inc. (Needham, MA)
    Dr. Thomas Wolfle, Retired Director.--Institute of Laboratory 
Animal Research, National Research Council; Program Director, National 
Research Council Committee that produced 1997 Report, Chimpanzees in 
Research: Strategies for Their Ethical Care, Management, and Use
    Dr. Richard Wrangham, Professor of Anthropology.--Harvard 
University (Cambridge, MA)
    Again, we appreciate the opportunity to share our views and 
priorities for the Labor, Health and Human Services, and Education 
Appropriation Act of fiscal year 2000. We hope the Committee will be 
able to accommodate these modest requests to address some very pressing 
problems affecting animals across the United States. Thank you for your 
consideration.
                                 ______
                                 

                   Letter From Dr. Kate Baker, et al.

                                                    April 15, 1999.
Hon. Arlen Specter, Chairman,
Labor, Health and Human Services, and Education Subcommittee, Senate 
        Committee on Appropriations, Washington, DC.
    Dear Mr. Chairman: As experts in the care and management of captive 
and wild chimpanzees, we are very concerned that laboratories in the 
United States currently support hundreds of unneeded or likely to be 
``surplus'' chimpanzees in need of retirement and sanctuary. The 46 
names listed below represent a broad coalition including research, 
animal protection, zoo, and sanctuary representatives. We urge the 
Committee's support for funding to establish permanent sanctuaries, as 
the most cost-effective and humane solution to the problem of unneeded 
chimpanzees and one which requires a public/private partnership.
                               background
    Sufficient similarities exist between chimpanzees and human beings 
that the chimpanzee has served as a human surrogate in research in the 
United States since the mid 1950s. Since then, chimpanzees have been 
bred extensively for use in many types of research, including space 
research, the development of infectious disease vaccines, biomedical/
biobehavioral studies, and cognitive research.
    In the mid 1980s, an initial investigation indicated that 
chimpanzees might serve as a vehicle to understand the human 
immunodeficiency virus (HIV). A breeding program was established to 
assure sufficient numbers of chimpanzees to meet the research 
requirements. It has become clear, ten years later, that there are 
large numbers of unneeded chimpanzees in laboratories due to the 
success of the chimpanzee breeding program, the decreased need in 
biomedical research, the ethical considerations posed by such research, 
and the high cost of maintenance. Currently, there are estimated to be 
several hundred chimpanzees no longer needed in biomedical research and 
the numbers are anticipated to grow.
    In response to a perceived oversupply of chimpanzees in 
laboratories and anticipating a need for a new management plan, the 
National Research Council was asked in 1994 to address the following 
issues:
  --The size of the breeding colony required to support future research 
        needs
  --Issues of ownership, long-term care, and use in research
  --Mechanisms by which non-governmental organizations could assist in 
        achieving appropriate goals and solutions for the long-term 
        care of chimpanzees
    Among the recommendations of the NRC's 1997 report, ``Chimpanzees 
in Research--Strategies for Their Ethical Care, Management, and Use,'' 
were:
  --A five year breeding moratorium (1997-2001) should be adopted
  --Euthanasia should not be considered as a management option
  --Sanctuaries should be established
    Housing and maintaining chimpanzees in laboratories is a costly 
process, and poses management problems, including significant 
challenges in providing captive-bred chimpanzees with appropriate 
living conditions. Currently, NIH is supporting approximately 600 
chimpanzees at a cost of between $15 and $30 per day per individual. 
These chimpanzees can be maintained in better environments at a far 
lower cost in a sanctuary setting, where they would be allowed to live 
the remainder of their natural lives without further invasive research 
or return to a laboratory. Sanctuaries designed and maintained by 
experts in the care and management of this species are the appropriate 
solution to the problem of lifetime care for unneeded chimpanzees, as 
recommended in the NRC report and by other experts.
                          request for funding
    For fiscal year 2000, we are requesting $12.5 million to construct 
a model sanctuary facility that can begin to address the serious 
problem of unneeded chimpanzees currently housed in laboratories. We 
respectfully recommend that these funds be allocated as follows: $9.5 
million for the initial construction of a sanctuary facility for 300 
chimpanzees; $1.5 million for operating expenses in the first year 
(e.g. to purchase start-up equipment and supplies, and hire initial 
staff); $1 million to provide interim support for chimpanzees awaiting 
retirement; and $450,000 for administration and oversight of this 
program by the NIH. For fiscal year 2001 and years thereafter, we also 
suggest funding of at least $1.5 million for operating costs and 
$450,000 for administration of this program by NIH, plus whatever new 
funds will be required to take care of additional chimpanzees that are 
found to be surplus to NIH's requirements.
    We very much appreciate your attention and look forward to working 
closely with you to obtain funds for this urgently-needed initiative.
            Sincerely,

                        Dr. Kate Baker, Research Associate, Yerkes 
                        Regional Primate Research Center, Emory 
                        University (Atlanta, GA).

                        Alan Berger, Executive Director, Animal 
                        Protection Institute (Sacramento, CA).

                        Dr. Tammie Bettinger, Coordinator of Scientific 
                        Studies, Cleveland Metroparks Zoo (Cleveland, 
                        OH).

                        Dr. Mollie Bloomsmith, Director of Research and 
                        Director of TECHlab Zoo, Atlanta (Atlanta, GA); 
                        Affiliate Scientist Yerkes Regional Primate 
                        Research Center, Emory University (Atlanta, 
                        GA).

                        Dr. Sarah Boysen, Director of Primate Cognition 
                        Project and Associate Professor of Comparative 
                        Psychology, Ohio State University (Columbus, 
                        OH).

                        Dr. Linda Brent, President, Chimp Haven, Inc. 
                        (San Antonio, TX).

                        Dr. Thomas Butler, Chairman, Department of 
                        Laboratory Animal Medicine Southwest Foundation 
                        for Biomedical Research (San Antonio, TX); 
                        Member, National Research Council Committee 
                        that produced 1997 Report, Chimpanzees in 
                        Research: Strategies for Their Ethical Care, 
                        Management, and Use.

                        Cindy Carroccio, Director, Austin Zoo (Austin, 
                        TX).

                        Peggy Cunniff, Executive Director, National 
                        Anti-Vivisection Society (Chicago, IL 
                        headquarters).

                        Dr. Philip Davies, Executive Director, 
                        Immunology & Rheumatology Merck & Co., Inc. 
                        (Rahway, NJ); Member, National Research Council 
                        Committee that produced 1997 Report, 
                        Chimpanzees in Research: Strategies for Their 
                        Ethical Care, Management, and Use.

                        Dr. Frans de Waal, Chandler Professor of 
                        Primate Behavior, Psychology Department, and 
                        Director of LIVING LINKS CENTER Yerkes Regional 
                        Primate Research Center, Emory University 
                        (Atlanta, GA).

                        Adele Douglass, Director, American Humane 
                        Association (D.C. headquarters).

                        Dr. Stephen Easley, Director, Easley and 
                        Associates, Professional Consultants 
                        (Alamorgordo, NM).

                        Jo Fritz, Director, Primate Foundation of 
                        Arizona (Mesa, AZ); Member, National Research 
                        Council Committee that produced 1997 Report, 
                        Chimpanzees in Research: Strategies for Their 
                        Ethical Care, Management, and Use.

                        Dr. Randy Fulk, Curator of Research and Species 
                        Coordinator for the Chimpanzee Species Survival 
                        Plan, North Carolina Zoo (Asheboro, NC).

                        Dr. William Hopkins, Professor of Psychology, 
                        Berry College (Rome, GA); Research Associate 
                        Yerkes Regional Primate Research Center, Emory 
                        University (Atlanta, GA).

                        Dr. Thomas Insel, Director, Yerkes Regional 
                        Primate Research Center, Emory University 
                        (Atlanta, GA).

                        Paul Irwin, President and CEO, The Humane 
                        Society of the United States (Washington, 
                        D.C.).

                        Dr. Michael Kastello, Executive Director, 
                        Research Resources Merck & Co., Inc. (Rahway, 
                        NJ).

                        Dr. Michale Keeling, Professor and Chairman, 
                        Department of Veterinary Sciences, University 
                        of Texas, M.D. Anderson Cancer Center (Bastrop, 
                        TX).

                        Dr. James King, Professor of Psychology 
                        University of Arizona (Tucson, AZ).

                        Linda Koebner, Executive Director, Chimp Haven, 
                        Inc. (New York City, NY).

                        Dr. Virginia Landau, Staff Primatologist, Jane 
                        Goodall Institute (Silver Spring, MD); 
                        Director, Chimpan Zoo (Tucson, AZ).

                        Debbie Leahy, President, Illinois Animal Action 
                        (Warrenville, IL).

                        Dr. Terry Maple, President, American Zoo and 
                        Aquarium Association (Silver Spring, MD); 
                        President and CEO, Zoo Atlanta (Atlanta, GA).

                        Dr. Linda Marchant, Professor of Anthropology, 
                        Miami University (Oxford, OH).

                        Dr. Michele Martino, Assistant Veterinarian, 
                        Southwest Foundation for Biomedical Research 
                        (San Antonio, TX).

                        Dr. Preston Marx, Senior Scientist, Aaron 
                        Diamond AIDS Research Center (New York City, NY 
                        headquarters); Professor of Tropical Medicine, 
                        Tulane Regional Primate Research Center; and 
                        Tulane School of Public Health and Tropical 
                        Medicine (Covington, LA).

                        Dr. William McGrew, Professor of Zoology, Miami 
                        University (Oxford, OH).

                        Dr. Robert Mitchell, Associate Professor of 
                        Psychology, Eastern Kentucky University 
                        (Richmond, KY).

                        Tina Nelson, Executive Director, American Anti-
                        Vivisection Society (Jenkinstown, PA).

                        Barbara Newell, Esq., Animal Legal Defense 
                        Fund; Great Ape Legal Project (Rockville, MD).

                        Dr. F. Barbara Orlans, Senior Research Fellow, 
                        Kennedy Institute of Ethics, Georgetown 
                        University (Washington, D.C.).

                        Ingrid Porton, Mammal Curator/Primates Saint 
                        Louis Zoological Park (St. Louis, MO).

                        Patti Ragan, Director, Center for Orangutan & 
                        Chimpanzee Conservation (Wauchula, FL).

                        Dr. Andrew Rowan, Senior Vice President for 
                        Research, Education, and International Issues, 
                        The Humane Society of the United States 
                        (Washington, D.C.).

                        Dr. Thomas Jefferson Rowell, Director, 
                        University of Southwestern Louisiana, New 
                        Iberia Research Center (New Iberia, LA).

                        Dr. Duane Rumbaugh, Director, Language Research 
                        Center, Georgia State University (Atlanta, GA).

                        Dr. Peter Theran, Vice President of Health and 
                        Hospitals Division, Massachusetts Society for 
                        the Prevention of Cruelty to Animals (Boston, 
                        MA); and Member, National Research Council 
                        Committee that produced 1997 Report, 
                        Chimpanzees in Research: Strategies for Their 
                        Ethical Care, Management, and Use.

                        Dr. Erna Toback, Scientific Advisory Board of 
                        Chimp Haven, Inc. (Los Angeles, CA); American 
                        Society of Primatologists; University of 
                        Stirling (Stirling, Scotland).

                        April Truitt, President, Primate Rescue Center, 
                        Inc. (Nicholasville, KY).

                        Dr. Paul Waldau, Vice President, Great Ape 
                        Project International (Boston, MA).

                        Lisa Weisberg, Esq., Vice President, Government 
                        Affairs American Society for the Prevention of 
                        Cruelty to Animals (New York City, NY).

                        Steven Wise, Esq., President, Center for the 
                        Expansion of Fundamental Rights, Inc. (Needham, 
                        MA).

                        Dr. Thomas Wolfle, Retired Director, Institute 
                        of Laboratory Animal Research, National 
                        Research Council; Program Director, National 
                        Research Council Committee that produced 1997 
                        Report, Chimpanzees in Research: Strategies for 
                        Their Ethical Care, Management, and Use.

                        Dr. Richard Wrangham, Professor of Anthropology 
                        Harvard University (Cambridge, MA).
                                 ______
                                 
 Prepared Joint Statement of the Population Association of America and 
                 the Association of Population Centers
    Thank you, Mr. Chairman for this opportunity to present the 
position of the Population Association of America (PAA) and the 
Association of Population Centers (APC) to the Subcommittee on Labor, 
Health and Human Services and Education on fiscal year 2000 funding for 
the National Institutes of Health (NIH), specifically the National 
Institute on Aging (NIA), and the National Institute of Child and 
Maternal Health (NICHD). You are a long-standing friend of both 
organizations and we want to emphasize how grateful we are for your 
appreciation and support of demographic research.
    As you know, PAA is a scientific and educational society of 
professionals working in demographic research. APC is a consortium of 
27 leading American population research centers. In addition to their 
academic roles, members of both organizations provide federal, state 
and local government agencies, as well as private sector institutions, 
with data and research to guide decision-making.
    In this testimony, we wish to express our support for the National 
Institutes of Health (NIH), specifically NIH support for demographic, 
social and behavioral research, and share recent demographic trends and 
research findings of interest with Congress.
    Demographic research covers many issues important to our nation, 
such as retirement, minority health, disability and long term care, 
child care, immigration, labor force participation, worker retraining, 
family formation and dissolution, and population forecasting. The 
United States is undergoing far-reaching shifts in its demographic 
composition and distribution. Such changes often are not recognized or 
understood until they confront society with new and immediate needs--
often requiring federal and state expenditures. Incorporating 
demographic, social and behavioral research into long term policy 
discussions allow such changes to be tracked and anticipated in a 
manner that promotes more coherent and efficient planning and policy 
implementation.
    NIH, specifically the National Institute of Child Health and Human 
Development (NICHD) and the National Institute on Aging (NIA) provide 
primary support for demographic research. We would like to take this 
opportunity to share with you information concerning aging, trends in 
adolescent health, the effects of welfare reform on children and 
families, profiles of legal immigrants, and changes in fatherhood.
  the national institute of child health and human development (nichd)
    NICHD has a well-established, successful population research 
program. NICHD is currently funded at $750.9 million with $44.1 million 
of the budget for research funded through the Demographic and 
Behavioral Sciences. Among the many areas of demographic research 
supported by NICHD are families and household composition; marriage and 
family change; fertility and family planning; teen pregnancy; 
mortality; HIV prevention; and population movement, distribution and 
composition. NICHD also funds a highly regarded population research 
centers program. Population research centers provide a critical core of 
professionals who conduct research in a cost-effective manner. Further, 
the centers' training programs are an essential source of population 
scientists who bring fresh perspectives, ideas and improved 
methodologies to demographic research.
    As you can see from the wide range of research topics listed above, 
NICHD-supported demographic research provides important, ongoing 
information critical to policymakers. We are pleased to provide 
information in this testimony that focuses on Add Health, the 
Fatherhood Initiative, the effects of welfare reform on children and 
families, profiles of legal immigrants, and the Family and Child Well-
Being Research Network.
National longitudinal study of adolescent health (add health)
    The Add Health survey is the first comprehensive national study of 
the social, psychological and environmental determinants of adolescent 
health. This study provides information that is valuable to parents, 
educators, researchers and policymakers. Although teens are generally a 
very healthy sub-group in the population, one in five has a serious 
health problem, which are often costly and affect adult health.
    In the Add Health Study, the collection of global network data on 
friendships has provided a means to study the influence of peers on 
adolescent behavior. Early results have documented that peers can have 
as great or greater influence than parents in some arenas.
    In fiscal year 1999 NICHD funded a follow up to the Add Health 
study. In 2000 the 20,000 adolescents first interviewed in 1995 will be 
re-interviewed to explore how the behaviors and conditions present in 
adolescence can help to predict health status in adulthood.
    Determining how to prevent adolescent health problems will 
contribute to a stronger and healthier society. PAA and APC hope this 
committee will continue to support research, such as the Add Health 
study, that adds to our understanding of changes in the teenage and 
adult population.
Fatherhood
    The decline of the incidence of marriage weakens the ties of men to 
women and children, with a resulting burden to the welfare system and 
to women and children themselves. Thus, it is important to understand 
the conditions which help to sustain men's participation in their 
family's lives. NICHD, in conjunction with the Federal interagency 
Forum on Child and Family Statistics and the National Center on Fathers 
and Families, launched a Fatherhood Initiative to review the capacity 
of the federal statistical system to conceptualize, measure and gather 
information from men about how they became fathers and how they provide 
economic and emotional support to their children.
    Among the results of this effort are the inclusion of men in the 
National Survey of Family Growth and the development of a fathers 
component in the Early Childhood Longitudinal Survey and the inclusion 
of basic research on fathers in the Early Head Start Research and 
Evaluation Project. NICHD is also supporting research to understand 
factors leading to stable unions among unmarried fathers and mothers.
    The roles fathers play in the lives of their children are strongly 
affected by the father's relationship to the mother: the access of 
fathers to their children is highest when parents are living together. 
In cases of divorce, a NICHD grantee has shown that many fathers have 
enormous desire to maintain contact with their children, and with 
intervention can continue to be major influences in the lives of their 
children even after the divorce.
Welfare reform effects on children and families
    The 1996 welfare reform act and the subsequent changes in the 
welfare programs of nearly every state constitute the greatest shift in 
social policy for low-income families with children since the Social 
Security Act of 1935. Since the passage of welfare reform legislation, 
welfare caseloads have dropped 40 percent. Yet we know very little 
about how these changes will affect these children and families. Both 
positive and negative scenarios can be constructed.
    The positive scenario is that leaving welfare for a job will make a 
mother feel more self-sufficient, raise her self-esteem, bolster her 
parenting behavior and provide a better role model for her children to 
emulate. Critics point to the challenges of combining employment and 
parenting for single parents with few economic resources. Jobs are 
difficult to find, low paying, and often do not provide health 
insurance. Good and affordable child-care may be difficult to obtain. 
The risk for children is increased parental distress, poorer parenting, 
inadequate childcare and greater economic hardship.
    We simply do not know which scenario will prove most accurate over 
time. NICHD is supporting several projects to study the effects of 
welfare reform on children and families. The NICHD supported studies in 
cities such as San Antonio, Boston, Chicago, Milwaukee and Los Angeles 
should provide us with a clearer understanding of the ways that 
children and their families are affected by this momentous change in 
social policy. These in depth community based studies will examine the 
impact of support from family, community networks, and public programs 
in helping families make the transition to self sufficiency while 
assessing the impact on child health and development.
Research on immigration
    Immigration has always played an important part in shaping the face 
and future of the United States. Understanding the trends in 
immigration and the characteristics of immigrants is vital for making 
informed policy decisions. NICHD, the Immigration and Naturalization 
Service (INS), the National Science Foundation (NSF), and the National 
Institute on Aging (NIA) have cooperatively funded a New Immigrant 
Survey Pilot Study (NIP). This study will provide immediate policy 
relevant information on immigrants in the United States and also serve 
as the foundation for long term research on immigrants.
    Much of the conventional wisdom on immigrants has been repudiated 
in recent NICHD supported studies. For example, legal immigrants are 
better schooled, on average, than the native born; the proportion with 
postgraduate education is almost three times larger than among the 
native born, at the same time, there is also a substantial group 
without a high school education. Overall, however, the quality of legal 
immigrants entering the United States is improving. Influenced by 
changes in immigration laws and changing economic conditions, the skill 
composition of immigrants to the United States has risen.
Family and child well-being research network
    Finally, we wanted to bring you up-to-date on NICHD's Family and 
Child Well-Being Research Network--an interdisciplinary data system 
focusing on child- and family-related research that relies on cross-
agency cooperation. This year the network has been renewed and 
expanded. The new network is comprised of scientists from nine 
universities collaboratively working with federal officials from NICHD, 
the Office of the Assistant Secretary for Health, of the Department of 
Health and Human Services (HHS), the Administration of Children and 
Families of HHS, the Census Bureau and the Department of Education. 
This network currently addresses a variety of questions about the 
interrelations between parent characteristics, family structure and 
organization, neighborhood attributes and different forms of social 
support. The network is committed to increasing the visibility of basic 
research findings to those involved in formulating public policy. 
Projects such as the Family and Child Well-Being Research Network 
perform the important task of helping synthesize research into sensible 
policy solutions.
    The Network, in cooperation with federal statistical agencies and 
the research community developed a comprehensive set of indicators of 
child well-being. Information from these indices is published annually 
by executive order. The first report titled, America's Children: Key 
National Indicators of Well-Being, was released in 1997 and is now 
published on an annual basis. This report provides a much improved 
information base that summarizes the changes in the overall well being 
of American children and families on an annual basis.
    PAA and APC enthusiastically support initiatives such as NICHD's 
Family and Child Well-Being Research Network that provide quick access 
to data and are efficient and effective resources for time sensitive 
policy-related research in cross-disciplinary fields.
                 the national institute on aging (nia)
    The NIA also has a well established and widely respected 
demographic research program, which provides crucial information on the 
implications of an aging of the American Population for our country. 
Currently, the NIA is funded at $596.5 million, with $39.6 million of 
that budget dedicated to demographic research--training, career 
development, and demographic, economic and epidemiological research. As 
the U.S. population ages and Congress contemplates sweeping changes in 
Medicare and Social Security, the demography of the elderly steadily 
becomes more important. The NIA has a strong history of supporting the 
collection of data, which allows demographers to study questions of 
concern to policymakers. Chief among these is the NIA-supported 
studies, the Health and Retirement Study (HRS) and its auxiliary 
survey, the Asset and Health Dynamics of the Oldest-Old (AHEAD) study. 
You have been a solid supporter of these two studies over the years, 
Mr. Chairman, and we would like to express our gratitude for your 
support.
Health and retirement study (HRS)
    As you know, the HRS focuses on mid-life work and health dynamics 
and collects biennial data on health and disability, work, health 
insurance, pensions and retirement plans, and obligations to family 
that may bear on retirement decisions. Using HRS data, researchers are 
able to explore issues related to health, disability and labor force 
participation; prospects for economic security; cognitive changes, 
health insurance coverage in the decade before Medicare eligibility.
    Researchers have long known that persons with higher levels of 
wealth and income have better health and live longer. The reasons for 
this relationship are not well understood. Is it that income and wealth 
cause better health through better access to health care or access to 
better health care? Or is it that poor health causes lower levels of 
wealth and income by decreasing work, reducing earnings, and increasing 
health care expenditures? HRS panel data are shedding some light on 
these difficult questions. An economist from RAND has recently shown, 
for example, that out-of-pocket health expenses account for only a 
small share of the reductions in wealth after an adverse health event. 
Furthermore, those without health insurance have just as large a 
decline in wealth as those with health insurance. Subsequent to a major 
health event, middle-aged persons tend to reduce their work hours or 
retire completely and use their accumulated savings in place of 
earnings. These results have important implications for spend-down to 
Medicaid eligibility and old-age poverty, especially for older women 
who tend to outlive their spouses.
    Education also is linked to health as well as wealth and income. 
Analyses of HRS by researchers at the University of Michigan suggest 
that education appears to have an enduring effect on health decisions. 
Among respondents who suffered a heart attack between the first two 
waves of the HRS, 90 percent of college grads quit smoking compared 
with only 10 percent of those with less than High School education. 
Related HRS research also shows that, among middle-aged diabetics, 
education raises their health investment in managing their disease 
through diet.
Asset and health dynamics of the oldest-old (AHEAD)
    The companion survey of HRS, AHEAD, provides unique information on 
the dynamics of health, economic resources and health care services. 
The study provides badly needed data on the costs and burdens of 
chronic disease and the consequences for the extended family. Over 
time, AHEAD will provide data on how families redistribute their 
resources across generations, and how these flows interact with public 
sector transfers. AHEAD informs policy decisions on initiatives such as 
Medicare/Medicaid coverage for community long-term care and 
prescription drug benefits.
    In addition to economic factors, sustained activity, such as PT 
work and volunteering, are thought to affect the well-being and health 
of the very old. AHEAD data indicate that there is a beneficial effect 
of volunteer work on cognition, health and survivorship. Volunteer work 
also is associated with higher education and wealth suggesting that 
social activities may be yet another pathway by which socio-economic 
status affects health, even in advanced old age.
    AHEAD data also collaborate improvements in old age health, first 
described by Duke University researchers using data from another NIA-
supported project, the National Long-term Care Survey. Across the first 
two waves of AHEAD (1993-95), respondents have shown very little 
overall decline in basic cognitive functioning. Higher education is 
protective of cognitive ability in old age.
    Finally, PAA and APC are interested in and support the current 
efforts to strengthen the Federal Forum on Aging Related Statistics 
that coordinates data across federal agencies. The forum is an example 
of NIA's interest in supporting NIH's innovative endeavor of 
streamlining federal databases and making data accessible to 
researchers from varied fields.
    PAA and APC would like to thank you for the opportunity to present 
this information. Demographic data and research are important tools for 
policymakers that can both save public funds and promote more informed 
decisionmaking. If this vital research is to continue producing 
relevant and timely information, adequate funding and congressional 
support are needed. The Population Association of America and the 
Association Population Centers support an increase in the range of 15 
percent to sustain the momentum of demographic research in the National 
Institutes of Health as part of the broadly based support to double the 
funding for the NIH over the next 5 years.
                                 ______
                                 
     Prepared Statement of Patricia Knaub, Dean, College of Human 
           Environmental Sciences, Oklahoma State University
    Mr. Chairman and Members of the Committee: My name is Patricia 
Knaub. I am Dean of the College of Human Environmental Sciences at 
Oklahoma State University. This testimony is in behalf of the Board of 
Human Sciences of the National Association of State Universities and 
Land Grant Colleges (NASULGC). The Board on Human Sciences (BOHS) 
represents those State Universities and Land Grant Colleges which 
conduct research, extension and education programs on nutrition and 
health, food safety and product development, human development from 
infancy to old age, family and community viability, and workforce 
development. Our work is supported by federal, state, and privately 
funded grants as well as CSREES formula funds and USDA competitive 
grants programs. In 1998 member colleges reported over $32 million in 
projects supported by HHS funding, more than $7 million of which was 
from various National Institutes of Health, approximately $3 million 
supporting ACF projects, $25,000 from CDC, and others from block grants 
to the various states.
    The BOHS strongly supports the proposed fiscal year 2000 Health and 
Human Services budget with special emphasis on those programs for which 
our colleges are prepared to carry out the work. As constituent units 
of major state and Land Grant Universities, human sciences colleges are 
linked through a network which fosters regional and national 
collaboration on research and education programs. Located within 
comprehensive universities human sciences faculty collaborate with 
faculties in chemistry, biochemistry, biology, social sciences, 
agriculture, and in a number of cases where colocated, with schools of 
medicine or veterinary medicine. With responsibility for research, 
academic and outreach programs, human sciences faculty are able to 
address problems from discovery to dissemination, by engaging students 
in the process, and by translating information through extension to the 
public. For example, discovery of nutrient metabolic precesses in our 
laboratories is translated into dietary guidelines used by industries, 
medicine, and for public educational programs. Human Sciences faculty 
research on brain development in children can be translated into 
guidance for the medical professions as well as for teachers of child 
development and parent education.
                  national institutes of health (nih)
    The fiscal year 2000 requests $15.9 billion for NIH, a $320 million 
or 2.1 percent increase over fiscal year 1999. The BOHS strongly 
endorses the four programmatic themes addressed in this budget:
    (1) exploiting genomics, expanding work on animal model systems, 
and learning to gather and use complex biological systems information;
    (2) reinvigorating clinical research by recruiting, training and 
retaining clinical investigators, supporting clinical trials, networks, 
and databases, and developing partnerships with managed care, 
foundations, industries and other federal agencies;
    (3) harnessing the expertise of allied disciplines such as 
chemistry, engineering, computer science, and physics in order to form 
interdisciplinary teams to design new foods, drugs, biomaterials, 
imaging molecules, chromosomes, cells, and organs; and
    (4)reducing health disparities at home and abroad through research, 
education, testing interventions and building international research 
capacity.
    By virtue of a systems approach to human problem solving, human 
sciences faculty are prepared to participate in the problem solving 
outlined by these themes and to translate findings into academic 
instruction and information useful to an array of professions, 
industries, and the general public through research and cooperative 
extension.
    The BOHS also supports the inclusion in the NIH request of $512 
million for individual and institutional training to support nearly 
15,700 pre- and post-doctoral research trainees.
             administration for children and families (acf)
    One of the five fiscal year 2000 legislative and program priorities 
of the BOHS is improving child care and education through daycare and 
the home setting. The ACF fiscal year 2000 budget requests $38 billion, 
of which $9.4 billion supports discretionary programs, $28.6 billion is 
entitlement budget authority. The programs include Head Start, 
reduction of family violence, child care, child support, foster care 
and adoption, and Temporary Assistance for Needy Families (TANF). Human 
sciences faculties in our member institutions support passage of child 
care legislation with an emphasis on quality of care. Quality can be 
assured through research based education of early childhood teachers 
and administrators, appropriate licensing and policy guidelines, and 
collaboration with local industries, government and parents.
    The fiscal year 2000 budget seeks $5.3 billion for Head Start to 
serve an additional 42,000 children and their families. This is an 
increase of $607 million over fiscal year 1999, providing a total of 
877,000 children a Head Start experience. Reauthorization of 
legislation supports doubling the size of Early Head Start by fiscal 
year 2002. Human sciences faculties collaborate extensively with 
community Head Start administrators providing expertise on program 
development and management, advocacy, and support for private and 
public collaborative efforts to provide quality child care. In return, 
Head Start programs provide learning opportunities for child 
development researchers and educators.
    The budget request contains $1.2 billion in discretionary child 
care funds in fiscal year 2001, due to advance appropriation, an 
increase of $183 million over fiscal year 1999. The funds will support 
affordable, quality child care for low-income working parents. Ten 
million dollars will be set aside for research, demonstration and 
evaluation activities. Human sciences faculties are well qualified to 
support these activities.
    The fiscal year 2000 budget requests $27 million for social 
services research, of which $6 million is discretionary funding. The 
BOHS urges support for these funds to support research and evaluation 
efforts focused on families transitioning from welfare to work, 
promoting responsible parenthood, and fostering child well-being. These 
findings are key to welfare reform strategies and family and child 
well-being outcomes.
            centers for disease control and prevention (cdc)
    The fiscal year 2000 budget requests $3.1 billion for CDC, a $201 
million or 7 percent increase over fiscal year 1999. The BOHS is 
especially supportive of the food safety initiative, a collaborative 
effort with FDA, and USDA. The budget proposes $29.5 million for this 
effort, an increase of $10 million or 51 percent increase over fiscal 
year 1999. CDC will expand its public health labs' ability to 
fingerprint DNA of microorganisms. Human sciences faculties support 
this effort and are in a position to help expand risk assessment 
studies of producers, processors, food handlers, and consumers. 
Education programs must be based upon an understanding of producer, 
processor, handler and consumer actual practices; perceptions of risk, 
and levels of tolerance for risk relative to food safety.
    The BOHS strongly endorses continued support for the Childhood 
Immunization Initiative, with a goal of 90 percent of all 2 year olds 
receiving a full series of vaccines. Successful programs of 
immunization and education for disease prevention are conducted by 
human sciences extension faculty in conjunction with local health 
departments and schools.
                     administration on aging (aoa)
    The BOHS supports the fiscal year 2000 request for $1.0 billion, an 
increase of $167 million over fiscal year 1999. Human sciences 
faculties are engaged in research and education programs for family and 
corporate caregivers, education for elderly in resource management and 
estate planning, nutrition education for individuals and congregate 
meal providers. The growing segment of this portion of the population 
requires research and education as well as policy development support.
    We applaud the HHS agency for well targeted initiatives in the 
fiscal year 2000 budget request. Researchers and extension educators 
represented by the Board on Human Sciences contribute significantly to 
the programs addressed in this budget. Support for this budget can help 
assure our contribution and that of others. Thank you for your 
attention to our commentary. We wish to work with the Congress and HHS 
in solving American health and human service problems.
                                 ______
                                 
 Prepared Statement of Dr. Stephen Reingold, Vice President, Research 
             Programs, National Multiple Sclerosis Society
    Mr. Chairman and distinguished members of the subcommittee, I 
appreciate the opportunity to speak before you today. My name is Dr. 
Stephen Reingold and I am the Vice President of Research Programs for 
the National Multiple Sclerosis Society. The Society is the world's 
largest private voluntary health agency devoted to the concerns of all 
those affected by MS. In my position, I oversee the Society's portfolio 
of basic and clinical research projects. I also administer the 
Society's decision-making process to fund research projects--the peer 
review process. Throughout the Society's 53-year history, our number 
one priority has been research to understand MS and apply this 
knowledge to the development of new treatments and a cure. 
Cumulatively, the Society has expended over $260 million in research 
funds in the United States and abroad. Our current annual budget for 
research exceeds $20 million. This represents the largest privately 
funded program of basic, clinical, and applied research and training 
related to multiple sclerosis in the world. We clearly understand the 
difficulty of meeting the overwhelming need for biomedical research and 
the daunting task of allocating limited resources among many worthy 
research projects.
    When testifying before you in previous years, an individual with MS 
represented the Society and explained the importance of research 
conducted at the National Institutes of Health to progress in 
developing treatments or a cure. This year, in addition to emphasizing 
the importance of NIH basic and clinical research to all people with 
chronic illnesses and disabilities, we would like to highlight our 
solid working relationship with NIH. Indeed, NIH and the National MS 
Society collaborate to further biomedical research and to end the 
devastating effects of MS.
    The openness of NIH to information exchange, cooperation and 
collaboration with interested constituents enhances the agency's 
ability to accomplish its mission of uncovering new knowledge that will 
lead to better health for everyone. For organizations like ours with a 
stake in the work of NIH, there are new opportunities to gain and share 
information. To members of the subcommittee, we point to these 
opportunities as evidence that increased federal funding of NIH is a 
sound scientific and economic investment for people with MS and for the 
wellbeing of all Americans. It is simply good public policy.
    MS is an often progressive, degenerative disease of the central 
nervous system, unpredictable in its course, and devastating in its 
impact. It can cause spasticity, tremor, abnormal fatigue, bladder and 
bowel dysfunction, visual problems and mobility impairment. The disease 
usually is diagnosed between the ages of 20 and 40--but is life-long. 
Many people with MS live thirty years or more with constant 
unpredictability and increasing disability. MS affects more than twice 
as many women as men, can result in loss of employment and loss of a 
place in society and the community. Recent studies sponsored by the MS 
Society show that the annual cost to each affected individual as a 
result of MS averages $34,000, and the total cost can exceed $2 million 
over an individual's lifetime. For all people with MS in the United 
States--some third of a million individuals, the annual cost is nearly 
$9 billion. Ending the devastating medical, personal and financial 
effects of this unpredictable disease is completely dependent upon the 
discovery of safe and effective treatments that halt progression of the 
disease and reverse its symptoms.
the national multiple sclerosis society and the national institutes of 
                                 health
National Institute of Neurological Disorders and Stroke
    The National MS Society has had a long and productive relationship 
with NIH, particularly with the National Institute of Neurological 
Disorders and Stroke (NINDS). Our founder, Ms. Sylvia Lawry, 
spearheaded the effort that led to the creation of the neurology 
institute at NIH in 1950, when President Truman signed the bill into 
law that established the former National Institute for Neurological 
Diseases and Blindness, now NINDS. Since then, the Society has had a 
very positive working relationship with the institute--a vital link for 
us since NINDS currently funds approximately 75 percent of the MS-
related research at NIH.
    The Society works with NINDS to coordinate grant funding. In cases 
where scientists seek support for projects from both NINDS and the 
Society, we have had fruitful negotiations with the agency to assure 
appropriate levels of funding.
    Intramural scientists from NINDS serve on our scientific advisory 
committees and help the Society make our research project decisions. 
Dr. Henry McFarland, Chief of the Neuroimmunology Branch at NINDS, 
chairs our senior Research Programs Advisory Committee, the panel of 
experts that oversees all of our research activities, and specifically 
reviews funding decisions made by primary peer review committees. Dr. 
Roland Martin, also in the Neuroimmunology Branch of NINDS, serves as a 
primary scientific reviewer. These outstanding scientist/physicians 
dedicate their volunteer time to help the Society make its research 
funding decisions, and to help ensure that the work of the Society and 
that of relevant parts of NIH are in concert, and not in opposition.
    We were pleased this past year to welcome the new director of 
NINDS, Dr. Gerald Fischbach. And we were honored when he asked us to 
provide comments on the new strategic priorities at NINDS for fiscal 
year 2000, a planning initiative that Dr. Fischbach intends to conduct 
annually. As some of you may know, NINDS is planning to focus its 
resources in the coming year on seven crosscutting topics of wide 
importance in neurological disease. These areas--which relate to 
nervous system function, structure, and understanding and treating 
neurologic disease--target both basic research knowledge and applied 
clinical development. Each of these areas is of vast importance to 
neurologic disease in general, and each of them has direct 
applicability to multiple sclerosis. The following focus areas are of 
greatest importance to the MS community:
  --Neurodegeneration, or studies of brain cell death, relates to nerve 
        and even immune cells within the central nervous system in MS 
        as well as other diseases.
  --Genetics, and particularly the genetics of neurologic disease, is 
        ripe for explosive discovery. The difficulty of unraveling the 
        genetic basis of disease susceptibility when a number of genes 
        are involved is enormous, and has direct impact on MS and 
        related neurological conditions. The tools to tackle this huge 
        problem are increasingly available, and increasingly available 
        at NIH.
  --Development of the nervous system and repair of damaged nervous 
        system tissue has wide application across many neurological 
        disorders including MS. All of the techniques that may be 
        brought to bear on Parkinson's disease and spinal cord injury 
        may be highly relevant to MS. This area could be ripe for an 
        interdisciplinary research effort among basic and clinical 
        scientists from a variety of disease areas--research that can 
        best be facilitated by NIH.
  --The NINDS plan stresses experimental therapies and clinical trials. 
        We applaud this. We believe that NINDS can play a very 
        important role in supporting clinical trials for agents that 
        normally would not be candidates for corporate development.
  --Finally, we are excited about the NINDS planned focus on 
        collaborative relationships with other federal agencies, 
        voluntary health agencies, and the private sector. Our 
        experience to date suggests that such relationships will be 
        ``win-win'' situations for all agencies and the patients we 
        serve. We are eager to explore such opportunities.
National Institute of Allergy and Infectious Diseases
    While MS is a neurological disease, the root problem in MS is 
dysfunction of the immune system. Therefore, the Society fosters close 
working relationships with the primary institute charged with studies 
of the immune system, the National Institute of Allergy and Infectious 
Diseases (NIAID). NIAID funds about 25 percent of the MS-related 
research at NIH. The Society benefits from a variety of interactions 
with NIAID:
  --Dr. David Marguelies, in the intramural Laboratory of Immunology at 
        NIAID, is a primary scientific reviewer of funding requests for 
        research projects at the MS Society.
  --We are currently participating in the NIH Autoimmune Disease 
        Coordinating Committee that is assessing federal and non-
        federal support of autoimmune disease research and plotting a 
        dynamic future research plan.
  --Staff representatives of NIAID contributed enormously to the 
        Society's recent targeted analysis of gender differences in MS 
        and other autoimmune diseases.
  --NIAID has an outstanding record of collaboration on projects with 
        other health organizations and we welcome the opportunity to 
        work more closely with NIAID in such efforts in the future.
Relationships with other sections of NIH
    The MS Society also has close ties with other NIH entities. Ms. 
Laura Cooper, who serves as Independent Living Consultant for the 
Society, is chair of the National Advisory Board on Rehabilitation 
Research which advises the National Center for Medical and 
Rehabilitation Research (NCMRR) on essential issues such as 
rehabilitation and quality of life for disabled individuals.
                      recommendations for funding
    The National Multiple Sclerosis Society believes that in order to 
take advantage of current opportunities in biomedical and 
rehabilitation research, Congress must continue the trend set in last 
year's appropriation for NIH. A further 15 percent increase in NIH 
funding for fiscal year 2000 would bring us closer to doubling NIH 
budget by 2003. In order to pursue cutting edge research, the Society 
recommends that this translate into a parallel 15 percent increase for 
NINDS and NIAID, the primary institutes that conduct nearly all of the 
MS-related research undertaken by the federal government.
                                summary
    NIH plays THE major role in maintaining our country's preeminence 
in the biotechnology industry and provides world-wide leadership in 
health research and discovery. The National MS Society could advocate 
for MS specific research and funding at NIH, but we do not. Rather, we 
recognize that new discovery and breakthrough findings could come from 
almost any area of biomedical research and could apply to the primary 
concern of our members: finding a cure for MS. We thus encourage 
Congress to focus on NIH as a whole, and on agencies of particular 
relevance to our concern, knowing that a well-funded federal research 
enterprise will benefit all of us. Continuing the 15 percent annual 
increase in funding through 2003 is an extraordinarily good use of 
federal resources and we encourage you to do whatever you can to make 
this a reality.
    Thank you for the opportunity to testify.
                                 ______
                                 
   Prepared Statement of the American Gastroenterological Association
                     i. summary of recommendations
    The American Gastroenterological Association (``AGA'') urges 
Congress to increase funding for medical research on digestive diseases 
and disorders through budgetary increases to the National Institutes of 
Health (``NIT''), Centers for Disease Control and Prevention (``CDC''), 
and the Agency for Health Care Policy and Research (``AHCPR'').
    Specifically, the AGA encourages Congress to provide at least a 15 
percent increase over fiscal year 1999 for NIH, raising the funding 
levels from $15.612 billion to $18 billion, as recommended by the Ad 
Hoc Group for Medical Research Funding. Within NIH, the AGA recommends 
a 15 percent increase for the National Institute of Diabetes and 
Digestive and Kidney Diseases (``NIDDK''), the National Cancer 
Institute (``NCI''), and the National Institute of Allergy and 
Infectious Diseases (``NIAID''). These increases would allow for 
further research on the diagnosis, treatment and cure for debilitating 
and devastating digestive diseases.
    The AGA also urges Congress to:
  --Increase funding for the CDC from $2.9 billion to $3.9 billion for 
        fiscal year 2000, an increase of 34.5 percent, as recommended 
        by the CDC Coalition.
  --Endorse the Friends of AHCPR recommendation to increase funding 
        31.5 percent over fiscal year 1999 for AHCPR from $171 million 
        to $225 million.
                  ii. medical research recommendations
    The AGA appreciates the opportunity to present its views regarding 
fiscal year 2000 appropriations for NIH, CDC, and AHCPR. The AGA is the 
nation's oldest, not-for-profit specialty medical society, consisting 
of over 10,000 gastroenterologic physicians and scientists who are 
involved in research, clinical practice, and education on disorders of 
the digestive system. As the nation's largest and leading voice of the 
gastrointestinal research community, the AGA is uniquely qualified to 
advise Congress on the current status of federally-supported digestive 
disease research programs and the areas in need of further research.
    Gastrointestinal cancer, foodborne illness, gastroesophageal reflux 
(``GERD'') and ulcers, motility disorders, inflammatory bowel disease, 
and hepatitis C account for the majority of digestive illnesses, 
impacting the lives of millions of Americans. They affect more than 
half of all Americans during their lifetime, ranking second among all 
causes of disability due to illness in the United States. These 
diseases annually result in over 200 million sick days, 16.9 million 
lost school days, and 10 million hospitalizations. In some of these 
areas, medical research has brought us close to developing lifesaving 
treatments and cures. Yet, in others, we still lack even a basic 
understanding of the cause and transmission of the disease. This 
testimony focuses on these serious health problems and makes 
recommendations on how Congress should allocate this country's precious 
medical research dollars.
Gastrointestinal cancers
    Sadly, 131,000 Americans will die from these cancers. The most 
common cancers involve the colon/rectum, stomach/esophagus, pancreas, 
liver/intrahepatic bile duct, and gallbladder.
  --It is estimated that 129,400 new cases will be diagnosed this year 
        with approximately 56,000 Americans projected to die from this 
        disease in 1999. Colorectal cancer is linked to age with over 
        90 percent of people diagnosed being over 50 years old. As 
        such, treating this disease presents a huge cost to the 
        Medicare program. Further, this disease strikes men and women 
        equally but is more common among and associated with higher 
        mortality rates in African Americans.
  --In this year alone, nearly 22,000 Americans will be diagnosed with 
        stomach or gastric cancer; 13,500 will die of it. A slightly 
        lower number of people, 12,500, will be diagnosed with 
        esophageal cancer this year. This cancer is three times more 
        prevalent in men than women, and in African Americans than 
        Caucasians.
  --The incidence of liver cancer is increasingly dramatic due to the 
        epidemic of chronic hepatitis C. Males have disproportionately 
        higher incidence and mortality rates for this cancer as 
        compared to females.
  --More females are diagnosed and die from this cancer as compared to 
        males.
    The good news is that biomedical research, basic and clinical, has 
yielded increasingly positive cancer survival rates when patients' 
conditions are detected early. For example, 90 percent of people who 
develop colorectal cancer can be effectively treated if the disease is 
caught sufficiently early. This high survival rate is related to the 
slow growth of the cancer. Colorectal cancer develops from polyps or 
slow growing, grape-like growths on the colon and rectum, which become 
cancerous over time. The key to prevention lies in removing the polyps 
prior to the development of cancer, making screening imperative 
especially since many patients are asymptomatic. Unfortunately, only 40 
percent of Americans are screened regularly. Thankfully, Medicare's new 
colorectal cancer screening benefit will help doctors improve the early 
detection rate. Improved screening alone, however, is not sufficient. 
We need additional research to understand the cause of these cancers 
and identify treatments for those whose illness is not detected early 
enough. Specifically, we encourage Congress to promote research into 
identifying the genes associated with these types of cancers.
    Researchers have identified a genetic link to gastrointestinal 
cancers in 20 percent to 30 percent of cases. Research shows that a 
genetic mutation at one generational level continues to mutate at 
succeeding generational levels, increasing a person's likelihood of 
developing cancer. Funding for additional research in this area is 
extremely important and should focus on:
  --The genetic aspects of gastrointestinal cancer including the 
        potential identification of other genes;
  --Diagnostic tests for genetic abnormalities and prevention;
  --Environmental factors relating to the development of this disease, 
        such as diet; and
  --The development and treatment of Barrett's syndrome (a precursor to 
        the development of lower esophageal/upper stomach cancer) in 
        patients with GERD.
    Agencies with potential interest in this area include NIH, CDC, and 
AHCPR. Within NIH, various institutes and offices should participate in 
this research including the NIDDK, NCI, National Human Genome Research 
Institute (``NUGRI''), National Institute of Environmental Health 
Sciences (``NIEHS''), National Institute on Aging (``NIA''), National 
Institute on Alcohol Abuse and Alcoholism (``NIAAA''), Office of 
Research on Minority Health (``ORE'), and Office of Research on Women's 
Health (``ORWH'').
Foodborne illness
    Some 6.5 to 33 million Americans suffer from foodborne illnesses 
each year, and 9,000 people die from these illnesses annually. Poor 
reporting of foodborne incidents causes the wide-ranging estimates, but 
it is clear that outbreaks of foodborne illness are increasingly 
commonplace: spread through swimming pools in Georgia; outbreaks in 
Chicago transmitted through milk; and infestations in day care centers. 
The more common pathogens include the following list.
  --Salmonellosis, a bacterial infection triggered by __________, will 
        cause between two and four million cases of illness this year.
  --0157:H7 (the pathological strain of the bacterium) is estimated to 
        cause 10,000 to 20,000 cases of illness annually with 250 
        deaths and economic losses of more than $200 million per year.
  --__________ causes a bacterial infection known as Shigellosis or 
        dysentery, which is expected to cause 18,000 confirmed cases 
        per year.
  --Approximately 10,000 cases of foodborne illness due to infection 
        with the bacterium are reported annually to the CDC with 500 
        annual deaths attributed to this pathogen.
  --The protozoan C will cause cyclosporiasis in an estimated 1,120 
        cases this year.
  --__________, a bacterium, will cause serious illness in 
        approximately 1,100 people resulting in death for 250 people 
        this year.
  --C, a protozoan, has a prevalence rate of two percent but is 
        estimated to have infected 80 percent of the population at some 
        point during their lives.
    Foodborne illness typically has an oral-fecal route of transmission 
with people getting sick from eating contaminated food or drinking 
infected water. Most foodborne illnesses attack the gut causing 
gastrointestinal symptoms such as anorexia, nausea, vomiting, diarrhea, 
bloody diarrhea, and abdominal discomfort. The resultant loss of 
electrolytes and fluids leads to dehydration and shock, and if not 
treated, death from vascular collapse and renal failure.
    Listeriosis is particularly alarming because of its close 
association with processed foods. It is more resistant to heat and 
acidity than most pathogens and does not change the taste or smell of 
food, making it difficult to suspect, trace, or eradicate. 
Additionally, listeriosis presents as a flu-like illness with fever, 
chills, fatigue, nausea, vomiting, diarrhea, severe headache, stiff 
neck and occasionally bacterial meningitis. Because of these flu-like 
symptoms, many people infected with this bacteria do not know that they 
have it until the disease has progressed to advanced stages resulting 
in high mortality and morbidity rates. As a result, 20 percent of 
people with listeriosis die from it. Pregnant women are twenty times 
more likely to get listeriosis with potential results including 
miscarriage, fetal death/stillbirth, septicemia, meningitis or death in 
the newborn. Further, people with acquired immunodeficiency syndrome 
(``AIDS'') are 300 times more likely to be infected with this illness 
than others with healthy immune systems.
    Those populations at-risk for severe repercussions from foodborne 
illness include those with decreased immune systems, pregnant women and 
fetuses, young children, elderly, those taking antibiotics and 
antacids, and those with inadequate access to health care such as the 
homeless, migrant farm workers, and those with low socio-economic 
status.
    We applaud Congress for its increasing awareness of and concern 
with the problems associated with foodborne illness, having in recent 
years enacted legislation and appropriated funds aimed at preventing 
bacteria from entering our food and water supplies through enhanced 
inspection programs. Moreover, current efforts would do precious little 
should the United States be the object of a deliberate bioterrorist 
attack on the nation's food or water supply. As such, we encourage 
Congress to channel additional resources into research for finding 
cures for people contaminated by foodborne pathogens.
    The AGA recommends that Congress encourage the NIH, including NIDDK 
and NIAID, and others conducting foodborne illness research like the 
United States Department of Agriculture (``USDA'') and the CDC to 
redirect their focus to concentrate more intensively on covering 
treatments for foodborne illness. Currently, the NIDDK, the NIAID, and 
the American Digestive Health Foundation (``ADHF''), a partnership 
sponsored in part by the AGA that supports research and education in 
digestive diseases, are working together to fund an RFA focused on 
foodborne illness research. However, this RFA alone is not enough. 
Additional research is needed in this important area. The AGA thus 
urges Congress to support research in the following areas.
  --The reaction of the gut. The research currently being performed has 
        focused on the kidney where few people are affected but the 
        mortality rate is high. Stopping the disease when it is 
        initially confined to the gut, however, would prevent the 
        kidney from even being affected.
  --The pathogenesis of the disease to: (a) identify the pathogens, (b) 
        understand contamination and transmission patterns, (c) 
        understand how pathogens translate into disease in humans, and 
        (d) determine the reason for antibiotic resistance.
  --The development of animal models to understand how the pathogens 
        cause disease and to develop treatment.
  --The invention of vaccines or substances that bind with the toxins 
        to prevent the illness.
    This type of research crosses many institutes at NIH including 
NIDDK, MAID, NIA, and the National Institute of Child Health and Human 
Development (``NICHD''). Federal agencies beyond the NIH, including the 
USDA, CDC, and the Department of Defense are also performing valuable 
research in these areas.
Motility disorders
    Eight to seventeen percent of Americans suffer from functional 
gastrointestinal disorders, making it a major cause of morbidity and 
mortality from digestive illnesses, particularly among females.
    We appreciate the work of Congress and NIDDK on a motility RFA. 
However, further research is needed in this area both due to the high 
prevalence of this disease as well as the lack of knowledge on how to 
identify, diagnose, and cure the disease. Irritable Bowel Syndrome 
(``IBS''), the most common motility disorder, is especially troubling 
because a patient does not present with any pathognomonic symptoms or 
laboratory findings of the disease, making diagnosis and treatment 
extremely difficult. IBS research focused on the following areas will 
do much towards alleviating these problems:
  --Understanding how the enteric nervous system works;
  --Clinical descriptions and epidemiological studies of patients with 
        IBS including family backgrounds;
  --Genes that determine susceptibility and resistance;
  --Brain interactions with the gut; and
  --Virus foodborne initiators that appear to cause IBS in previously 
        unaffected individuals.
    A lack of a basic understanding of IBS has made drug manufacturers 
reluctant to fund research. If more federally funded research was 
focused on IBS, it would stimulate more private-public partnerships, 
and lead to advances in medical knowledge.
Inflammatory bowel disease (Ulcerative Colitis and Crohn's disease)
    Unlike IBS, inflammatory bowel disease (``IBD'') involves an 
inflammation of the bowel. One type of IBD is Crohn's disease, which 
primarily involves the colon and small bowel. The other is ulcerative 
colitis affecting the inner lining of the large intestine. IBD usually 
begins in early adulthood and persists throughout life with remissions. 
IBD affects people in the prime and most productive years of their 
lives and results in substantial morbidity and economic loss to them 
and society. People with IBD experience abdominal pain, fever, bowel 
sores, intestinal bleeding, anorexia, weight loss, fullness, diarrhea, 
constipation, and vomiting. In severe cases, the patient can hemorrhage 
or contract sepsis/toxemia resulting in death. The cause of IBD is 
unknown; it may be a virus or bacteria that alters the body's immune 
response causing an inflammatory reaction in the intestinal wall. 
Studies on the cause of IBD are desperately needed in order to have a 
better understanding of the disease and work towards more effective 
management and treatment.
Hepatitis C
    Viral hepatitis is caused by six different viruses (commonly 
labeled A, B, C, D, E, and G), each of which can trigger acute 
hepatitis. Only hepatitis B, C, D, and G cause chronic hepatitis with 
hepatitis C accounting for 60 percent to 70 percent of all chronic 
cases of hepatitis. A________. This disease is projected to cost $600 
million a year in terms of medical care and work loss, excluding 
transplantation costs. Between 8,000 to 10,000 people are expected to 
die from HCV this year with the death rate expected to triple over the 
next decade. It ranks second only to alcohol abuse as the cause of 
cirrhosis (i.e., liver cell damage and scarring) and liver disease, and 
is the leading cause for liver transplants in the United States. 
Minority populations have a higher prevalence of this disease with the 
rate being 1.5 percent in non-Hispanic Caucasians, 3 percent in African 
Americans, and 2.1 percent in Mexican Americans.
    Acute hepatitis C results in a chronic infection in over 85 percent 
of the cases with most contracting chronic liver disease. The chronic 
infection associated with HCV is often asymptomatic, making detection 
extremely difficult. In fact, many people do not even know they are 
infected. This is so even though the virus can be easily detected 
through a simple blood test. Twenty-five to thirty percent of people 
infected with HCV develop symptoms ranging from mild to moderate 
problems of jaundice, fatigue, abdominal pain, loss of appetite, 
intermittent nausea, and vomiting to more severe, life-threatening 
conditions such as liver disease, cirrhosis, and end-stage liver 
disease, including cancer.
    Fortunately, Congress has vigorously supported HCV research. Past 
NIH research has provided some hope in terms of treatment. Long-term 
remission was attained in up to 40 percent of HCV patients receiving 
alpha interferon along with ribavirin, an anti-viral agent. Moreover, 
NIDDK and NIAID recently issued an RFA focusing on HCV.
    Despite this support, treatment is highly effective in only 15 
percent to 30 percent of patients. Further, no vaccines are currently 
available to prevent hepatitis C. Accordingly, more research is needed. 
The AGA urges Congress to encourage the NIH to support the following 
areas of research:
  --The molecular biology of HCV;
  --A longitudinal study on the normal clinical course of hepatitis C 
        and factors resulting in progression to cirrhosis and liver 
        cancer;
  --Epidemiological studies on hepatitis C and alcohol consumption; and
  --The interaction between HCV and other diseases such as diabetes and 
        AIDS.
    This research would enable the development of therapies to stop the 
progression of the disease, a vaccine to prevent transmission of HCV, 
and strategies for educating at-risk groups.
    NIH groups specifically interested or affected by this disease 
include the NIDDK, NIAID, NCI, ORMH, National Heart, Lung, and Blood 
Institute (``NHLBI''), Office of AIDS Research (``OAR''), and National 
Institute on Drug Abuse (``NIDA''). All should be encouraged to support 
additional research into this area.
Gastrointestinal centers
    Currently, twelve centers exist with a thirteenth center planned 
for fiscal year 2000. These centers conduct basic and clinical research 
on digestive, hepatic, and pancreatic disorders. They have been highly 
successful in expanding medical knowledge on pancreatic disease, 
genetic diseases (e.g., hemochromatosis) and gene therapy, pediatric 
gastrointestinal diseases, hepatitis C, IBS, IBD, inflammatory 
cytokines, and food safety. A 15 percent increase in funding for NIDDK 
over fiscal year 1999 would allow full funding and expansion of these 
centers.
                      iii. funding recommendations
    The diseases, illnesses, disorders, and syndromes described above 
continue to take a huge toll on the American public and economy. The 
AGA appreciates Congress' commitment to biomedical research, to the NIH 
in recent years, and to digestive diseases research in particular. 
However, more effort is needed. Many of the illnesses described above 
are only now beginning to emerge as the next epidemic (e.g., HCV). For 
others, like certain gastrointestinal cancers, research advances have 
placed the hope of eradication within our grasp. In either case, now is 
not the time to shortchange this country's vital research programs. 
Congress must keep up the momentum it has started, and in some cases, 
devote even more resources.
    We encourage Congress to ensure that the federal biomedical 
research infrastructure has adequate resources to appropriately pursue 
research opportunities in the areas discussed above by fulfilling the 
funding recommendations outlined below.
  --____________
  --____________
  --____________
    The AGA appreciates the opportunity to present its views on the 
fiscal year 2000 appropriations. Please call Michael Roberts, Vice 
President of Public and Government Relations at the AGA, at (301) 941-
2618 if you have further questions.
                                 ______
                                 
Prepared Statement of the National Association of Anorexia Nervosa and 
                          Associated Disorders
    Founded in 1976, ANAD is our nation's oldest non-profit 
organization dedicated to alleviating the problems of the following 
eating disorders; anorexia nervosa, bulimia nervosa and binge eating 
disorder. Our testimony is on behalf of the estimated 7,000,000 women 
and 1,000,000 men suffering from serious and often life-threatening 
eating disorders in America today. ANAD's education, early detection, 
and prevention programs provide models for low cost outreach services 
that benefit hundreds of thousand Americans. ANAD programs are free and 
demonstrate that effective helping strategies need not be expensive.
    Eating disorders are a form of severe mental illness with a 
significant physical impact and many complex causes including 
psychological, familial, and sociocultural components. And as some 
recent authoritative studies have revealed, genetic and biological 
components. Although eating disorders develop primarily before 
adulthood, they can be found in older women, in men and boys and across 
any racial, ethnic and socio-economic boundaries. Statistically, death 
and disability rates for eating disorders are among the highest of all 
mental illnesses. The National Institute of Mental Health estimates 
that 10 percent of victims die. NIMH also reports that 1 in every 100-
200 adolescent girls will be afflicted with an eating disorder. 
Further, 80-90 percent of the onset of disordered eating behaviors 
occurs by the age of 20 with 43 percent under the age of 15. 
Fortunately, with appropriate medical and psychological treatment, 
individuals do recover from these terrible illnesses. Treated early, 
eating disorders are curable and at lower cost emotionally and 
monetarily.
    Eating disorders as a phenomena are culturally embedded in the 
experience of American young adulthood. Studies indicate that the 
incidence of eating disorders is growing rapidly. This is not 
surprising, given our culture's obsession with thinness and billion 
dollar industries devoted to weight loss which contribute to the 
initiation and progression of these destructive behaviors. And while 
these problems are especially acute for our nation's girls, they are 
shared with a growing number of boys.
    In an article published late last year, Dr. Daniel Krowchuk, a 
pediatrician at Wake Forest University School of Medicine, documented 
his research with over two thousand sixth, seventh and eighth grade 
students on weight control issues. In his study Dr. Krowchuk found that 
almost 10 percent of the girls and 4 percent of the boys surveyed 
reported vomiting or using laxatives to lose weight. Dr. Krowchuk 
concluded, ``Younger adolescents trying to lose weight engage in a 
variety of problem dieting and weight loss behaviors that can 
compromise health and may be associated with eating disorders.''
    Dr. Krowchuk's study and others like it is the reason that my focus 
today is on education and prevention. There is concern among some in 
the medical and academic communities that previous educational programs 
aimed at prevention of eating disorders have been tainted by their 
tendency to, in essence, teach youngsters about the unhealthy diet 
practices utilized by anorexics and bulimics. This might possibly serve 
to advertise those destructive behaviors to some susceptible youngsters 
where the opposite is intended.
    For this reason we ask Congress to appropriate a minimum of 
$10,000,000 for the development and implementation of comprehensive 
education and prevention programs that promote correct notions about 
nutrition, body development and growth through educational wellness for 
all of America's school-aged children and early identification of those 
at risk for these diseases.
    To be truly effective, prevention programs should focus on teaching 
children the skills necessary to cope with the emotional complexities 
of life in a positive, life and self-affirming way with an emphasis on 
nutritionally sound eating practices. Our young people need to learn 
self-respect, appropriate responses to both successes and failures, and 
ways of handling change without succumbing to an unhealthy relationship 
with food. Children and adolescents should be discouraged from 
embracing the myth that happiness hinges on attaining a ``perfect'' 
body as defined by the popular media.
    Eating disorders are multi-causal, yet much about the nature of 
these disorders still remains unknown. For this reason, we also ask 
Congress to increase current funding by an additional $10,000,000 for 
the research necessary to further investigate the causes of these 
disorders. One of the keys to helping the predominantly teenage victims 
of eating disorders is by identifying the specific population at risk 
for developing these diseases. Research which results in discerning the 
specific cause or causes for eating disorders renders three great 
results 1. better treatment; 2. development of effective prevention 
programs; and 3. development of focused education programs. The 
biological component of eating disorder causation which has gotten 
significant press recently particularly warrants further study. This 
funding is essential, if we are to develop truly effective prevention 
programs.
    In order to ensure that federal monies earmarked for eating 
disorders research are used solely for this purpose, funds allocated 
should have built within them a system for monitoring their application 
and use.
    We ask the members of this subcommittee and Congress to enact 
legislation that provides funding aimed at preventing another 
generation of youth from developing eating disorders in rapidly 
increasing numbers. This legislation would also fund research to get to 
the root cause of eating disorders. Thus, strengthening the 
effectiveness of eating disorder treatment protocols.
    Thank you.
                                 ______
                                 
 Prepared Statement of the Foundation for Ichthyosis and Related Skin 
                                 Types
    Mr. Chairman and members of the Subcommittee: The Foundation for 
Ichthyosis and Related Skin Types (F.I.R.S.T.) wishes to thank the 
subcommittee for this opportunity to testify regarding funding for skin 
disease research and the budget of the National Institute of Arthritis, 
Musculoskeletal and Skin Diseases (NIAMS).
    F.I.R.S.T. is a voluntary organization dedicated to providing 
support, information, education and advocacy for individuals and 
families affected by ichthyosis. F.I.R.S.T. supports research into 
causes, treatment and a cure for ichthyosis.
    Ichthyosis is a family of genetic skin diseases characterized by 
dry, thickened, scaling skin. These diseases are caused by genetic 
defects that are usually the result of genetic inheritance. Currently, 
there is no cure for Ichthyosis, and there are no truly effective 
treatments.
    Some forms of ichthyosis cause the skin to be very fragile and 
blister easily. Scaling and flaking are continuous. The skin is tight 
and cracked. The palms and soles can be thick, making something as 
simple as holding a pencil or as natural as walking difficult and 
painful. Overheating is dangerous and infections are a constant threat.
    Our children are sometimes hospitalized for infections. Simple 
medical procedures are complicated. Days and activities are planned 
around skin care. Stares and questions from strangers are common. While 
the physical aspects of ichthyosis are obvious, the blows to ones self 
esteem can be even more damaging. Currently, ichthyosis is a life-long 
battle. Hopefully, this will change in the future.
    We recognize this Subcommittee's strong history of bipartisan 
support for medical research funding and the NIH. In 1992, researchers 
identified the sites of two genetic mutations that account for 70 
percent to 80 percent percent of all cases of EHK. Since that time, 
genetic mutations that cause other forms of ichthyosis have been 
identified and scientists and physicians have a much better 
understanding of the disease process.
    We are excited about this progress, and about the current research 
into gene therapy. We are hopeful about the possibility for an 
effective treatment or cure on the horizon, but at this point it is 
still just hope. We continue to be frustrated by the lack of effective 
treatment options.
    We are also discouraged by the lack of available testing 
facilities. Genetic testing is possible today for the types of 
ichthyosis for which the specific mutations have already been 
identified. However, with the exception of one of the milder forms of 
ichthyosis, (Recessive X-linked Ichthyosis) there are no clinical 
laboratories that offer these services. These tests are complex and 
time consuming. However, they can provide valuable information to 
affected families. They can also help to plan appropriate intervention 
for those at risk for labor and delivery problems and premature birth 
that are common with some forms of ichthyosis.
    The Foundation for Ichthyosis and Related Skin Types (F.I.R.S.T.) 
urges the Congress to provide $354 million in fiscal year 2000 for the 
National Institute of Arthritis and Musculoskeletal and Skin Diseases, 
a 15 percent increase over fiscal year 1999. We believe that this 
increase is necessary to allow NIAMS to support a greater number of 
worthy research projects, conduct more clinical trials and expand it's 
intramural research program.
    F.I.R.S.T. also supports increased investment in translational 
research, which would build upon this new scientific knowledge to 
develop practical applications for those with ichthyosis and other skin 
diseases. The recent discovery of many of the genes involved in 
specific skin diseases is just the starting point for improving 
diagnosis and treatment.
    In 1992 a member of F.I.R.S.T. testified before this committee 
regarding the need for a national registry. Today, as a direct result 
of your interest and support, we have the National Registry for 
Ichthyosis and Related Disorders. Many of our members, and their 
physicians, have participated in the detailed enrollment process, and 
enrollment is proceeding at an ever increasing rate. The registry helps 
generate researcher interest in ichthyosis, and provides investigators 
with an essential tool--a pool of affected individuals with a confirmed 
clinical diagnosis. The availability of this pool of information 
results in significant savings in research time and dollars which would 
have normally been spent identifying eligible patient populations.
    Current funding for the National Registry for Ichthyosis and 
Related Disorders expires in 1999, but the work of the registry must 
continue. Continued funding of the skin disease registries will ensure 
that these resources will be maintained and will continue to be a 
valuable tool for investigators.
    On behalf of our members, those with ichthyosis and their families, 
we thank this Congressional Subcommittee for their time and attention.
    Additional copies of this testimony can be obtained through the 
Foundation's web site: www.libertynet.org/ichthyos or by contacting 
F.I.R.S.T. at PO Box 669, Ardmore, PA 19003 (610) 789-3995.
                                 ______
                                 
    Prepared Statement of Kelly Carr, Managing Director, Museums & 
             Universities Supporting Educational Enrichment
    Mr. Chairman, I appreciate the opportunity to put into the record 
this brief statement about Museums & Universities Supporting 
Educational Enrichment, better known as MUSEE. MUSEE is a 501(c)(3) 
not-for-profit organization, based in Philadelphia, which works with 
schools, libraries and cultural institutions to increase public access 
to the benefits of museum-based curriculum and computer technology.
    The themes underlying MUSEE's initiatives and activities are 
embodied in the Elementary & Secondary Education Act in Title III 
(Technology & Education). Among other mandates, that Act, as you know, 
requires the Federal government to develop a long-range plan which 
outlines the effective use of technology in education. Included in the 
intent of the Act is an authorization for funding to encourage local 
partnerships among school districts, non-profit organizations and 
technology companies. The stated purpose of these consortia is to 
improve teaching and learning through the use of advanced technology, 
including ``technological education to students as well as training of 
teachers''.
    MUSEE has three main goals which are congruent with the Elementary 
and Secondary Education Act: (1) to advance education at the elementary 
and secondary (and higher) education levels; (2) to stimulate public 
interest in educational and cultural institutions, and (3) to enhance 
cultural awareness within the educational arena and the public. In 
carrying out its mission in pursuit of those goals, MUSEE assists 
various institutions in preparing for future developments in education 
and the uses of technology.
    Over the time of its existence, MUSEE has found that it can best 
accomplish its goal of serving the public by fostering information 
exchanges between educational institutions and technology companies. In 
turn, these exchanges generate new ways to better utilize technology 
for educational purposes.
    MUSEE facilitates the information exchanges in a number of ways, 
including through the Internet and through special seminars. MUSEE also 
works with public institutions, in a consultant capacity, to create 
educational tools for use in elementary and secondary schools, and to 
archive resources for educational and cultural research. All of these 
institutions have benefited from their associations with MUSEE.
    As you know, Mr. Chairman, MUSEE requested grant funding assistance 
in the fiscal year 1999 Labor, Health and Human Services, and Education 
Bill. Senate Report 105-300 (which accompanied the Year 1999 Labor, 
Health and Human Services, and Education Bill) contains language which 
stipulates that a $2,000,000 Technology Innovation Challenge Grant 
should be made available to MUSEE. The purpose of the grant, as noted 
in the language, is to assist in funding a traveling technology 
exposition which will travel throughout the country. The exposition 
will showcase technology software and instructional programs for 
teachers, students and other sectors of the population through on-site 
seminars on technology in the classroom.
    As part of the required protocol for accessing the funds noted in 
the Senate Report, MUSEE has formed a consortium of local school 
districts and other non-profit entities, along with various multi-media 
companies. The exposition, for which the funds will be used, will begin 
in Philadelphia, then move to Chicago and ultimately travel throughout 
the Nation and beyond. MUSEE will continue to work with the Department 
of Education on this initiative.
    The fiscal year 1999 funding will be devoted to the first phase of 
the exposition. In order to launch the next phase, MUSEE is requesting 
$2,000,000 in the fiscal year 2000 Labor, Health and Human Services 
Appropriations Bill. This second phase will provide the necessary 
assistance to bring the overall exposition initiative to full maturity.
    Mr. Chairman, MUSEE has already acquired considerable support funds 
from the private sector. The Federal funding component is necessary to 
move the effort forward. If MUSEE receives the necessary Federal funds, 
the public-at-large, and particularly school children, will benefit 
from the MUSEE project through increased access to high technology 
learning tools. I urge you to fund this effort, as it is worthwhile for 
the future of education and in keeping with the intent of the 
Elementary and Secondary Education Act.
    Thank you for this opportunity.
                                 ______
                                 
     Prepared Statement of the Biotechnology Industry Organization
    The Biotechnology Industry Organization (BIO) \1\ is pleased to 
submit this statement in support of increased appropriations for the 
National Institutes of Health (NIH). BIO represents over 860 
biotechnology companies, academic institutions, and state biotechnology 
centers, in 47 states and more than 26 nations. BIO members are 
involved in the research and development of the life sciences including 
health care, agricultural, and environmental biotechnology products.
---------------------------------------------------------------------------
    \1\ For further information contact Chuck Ludlam, Vice President 
for Government Relations or Brett Karcher, Government Relations 
Assistant 202-857-0244.
---------------------------------------------------------------------------
    BIO supports a $2.3 billion--15 percent--increase in NIH funding 
for fiscal year 2000. This is in line with the proposal by the Ad Hoc 
Group for Medical Research Funding. BIO is the only representative of 
industry on the Executive Committee of the Ad Hoc Group, a coalition of 
voluntary health groups, medical and scientific societies, academic and 
research organizations, and industry representatives. This proposed 
increase for fiscal year 2000 is the second step towards doubling the 
NIH budget by 2003. BIO recognizes the difficulty in achieving such a 
goal under the current spending limits, and therefore, encourages the 
Senate Appropriations Subcommittee to explore all possible options to 
identify the additional resources needed to support this credible goal.
                biotechnology industry-nih partnerships
    The U.S. biotechnology industry, along with the NIH and its 
grantees, have a strong partnership which is crucial to promoting new 
product development. Federally-funded basic biomedical research must be 
transferred to the biotech and pharmaceutical industries for products 
to become available to patients.
    The biotechnology industry mainly conducts applied biomedical 
research that explores ways to develop crude medical technologies into 
drugs and biologics. While the biotechnology industry conducts some 
basic research, it relies on NIH and its grantees to conduct the 
majority of basic research. Once NIH or its grantees discover a new 
technology from basic research, they license it to a biotechnology 
company. The biotechnology company then invests in applied research to 
produce a drug or biologic. Both NIH and the biotechnology industry 
play complementary and distinct roles in the drug development process; 
each role is essential for continued U.S. leadership in drug 
development.
    The biotechnology industry is growing rapidly. Currently there are 
82 biotechnology drugs and vaccines on the market helping over 100 
million patients worldwide. Over the past four years, 75 of these 
medicines have been approved by the Food and Drug Administration (FDA), 
and now, more than 300 biotechnology medicines are in second and third 
stage clinical trials. These 300 medicines under FDA review are drugs 
for AIDS; breast, ovarian and prostate cancers; heart disease; 
Alzheimer's; genetic diseases such as cystic fibrosis and many other 
conditions.
    In 1998, the biotechnology industry employed 153,000 people, a nine 
percent increase over 1997; recorded product sales of $13.4 billion, a 
17 percent increase over 1997; and increased its market capitalization 
(value of its entire capital assets) from $41 billion to $97 billion 
over the past five years.\2\
---------------------------------------------------------------------------
    \2\ Ernst & Young, Bridging the Gap: Ernst & Young's 13th 
Biotechnology Industry Annual Report, 1999 at 4. (1999); Ernst & Young, 
Reform, Restructure, Renewal: The Ernst & Young Ninth Annual Report on 
the Biotechnology Industry, 1995 at 2. (1996).
---------------------------------------------------------------------------
    The biotechnology industry is one of the most research-intensive 
industries in the world. A crucial factor contributing to this rapid 
growth is the enormous investment in research and development by 
biotechnology companies financed by private investors. In 1995, the 
five companies with the highest research and development budgets per 
employee were U.S. biotechnology companies. Biogen, Genetics Institute, 
Genentech, Immunex, and Amgen had R&D budgets per employee between 
$210,653.5 and $91,265.8.\3\ (The R&D chart is located in Appendix I.) 
In 1998, the entire biotechnology industry invested $9.9 billion in 
research and development, a 16 percent increase over the previous year. 
Because only 3.5 percent (45 of approximately 1,300 companies) have 
product sales to fund research, biotechnology companies depend on 
venture capital and public market investors to fund their research. 
Furthermore, it is rare for biotechnology companies to make a profit. 
The biotechnology industry lost $5.1 billion, a 50 percent increase in 
losses over the previous year ($3.4 billion in losses). To date the 
biotechnology industry has never had a profitable year.
---------------------------------------------------------------------------
    \3\ ``1995 R & D Scoreboard,'' Business Week 3 July 1995.
---------------------------------------------------------------------------
    These negative balance sheets are understandable when one takes 
into account that, on average, it costs $300 to $450 \4\ million and 
takes, on average, 15.2 years from the time a new drug is discovered 
until it is approved by the Food and Drug Administration.\5\ In short, 
producing cutting-edge medicines is an extremely expensive, risky, 
long-term undertaking which requires continued strong Federal 
government support for NIH.
---------------------------------------------------------------------------
    \4\ DDT Vol. 3, No. 11 November 1998 at 487, published by Elsevier 
Science Ltd.
    \5\ ``The Tufts Center for the Study of Drug Development, 1996--
1997 Annual Report at 15.
---------------------------------------------------------------------------
    Increased funding for NIH will generate more basic research which 
can be transferred to the private sector for commercialization. From 
1996 to 1998 only 28 to 31 percent of all research grant applications, 
were funded.\6\ In other words, over the last three years approximately 
70 percent of NIH grants were unfunded, which was not due to lack of 
scientific merit. The vast majority of NIH grant applications meet the 
scientific requirements and would make significant inquiries into 
disease, if only the NIH budget were sufficient to support these 
scientific opportunities.
---------------------------------------------------------------------------
    \6\ ``A Resource Guide, The Ad Hoc Group for Medical Research 
Funding'' February 1999, at v.
---------------------------------------------------------------------------
                    the role of technology transfer
    The partnership between NIH and its grantees and the 
biopharmaceutical industry stand at the center of the world's most 
productive biomedical research enterprise. This successful partnership 
is founded on the transfer of technology from NIH and its grantees to 
biopharmaceutical companies. Outlined below are fundamental technology 
transfer mechanisms that facilitates the transition of basic research 
into new drugs and biologics.
  --NIH and NIH-grantees have entered into a broad array of research 
        agreements and licenses. These agreements and licenses 
        typically provide that intellectual property generated by NIH 
        and NIH-grantees is licensed or sold to biotechnology and 
        pharmaceutical companies in exchange for royalty payments on 
        any sales.
  --Licenses can be exclusive or non-exclusive (i.e. sold to one, or 
        more than one entity). Each type of license may be appropriate 
        depending on the circumstances. About 10 percent of NIH's 
        licenses are exclusive. Academic researchers not engaged in 
        research for commercial use are not affected by the existence 
        of an exclusive license. The Association of University 
        Technology Managers (AUTM) Licensing Survey, fiscal year 1997, 
        found that universities executed 2,665 licenses and options of 
        which 1,377 were exclusive (52 percent) and 1,288 were non-
        exclusive (48 percent); \7\ U.S. hospitals and research 
        institutes executed 361 licenses and options, of which 208 were 
        exclusive (58 percent) and 153 were non-exclusive (42 
        percent);\8\ and Canadian institutions executed 198 licenses 
        and options, of which 139 were exclusive (70 percent) and 59 
        were non-exclusive (30 percent).\9\
---------------------------------------------------------------------------
    \7\ AUTM Licensing Survey, fiscal year 1997, Association of 
University Technology Manager, Inc. at 94.
    \8\ AUTM Licensing Survey, fiscal year 1997, Association of 
University Technology Manager, Inc. at 146.
    \9\ AUTM Licensing Survey, fiscal year 1997, Association of 
University Technology Manager, Inc. at 165.
---------------------------------------------------------------------------
    An exclusive license gives a company a greater incentive to invest 
its resources in the development of technology and this means that the 
companies are able and willing to pay a higher royalty rate to the NIH 
or an NIH-grantee. Exclusive licenses are particularly appropriate in 
cases where substantial risk and expense are involved in the 
development of basic research into a marketable product.
  --Central to these relationships are patents which ensure that the 
        results of the university and industry investments are not 
        misappropriated by those who did not make the investments. 
        Without patent protection no company can persuade its investors 
        to put their capital at risk, and NIH and its grantees would 
        have no intellectual property to license. The patentability of 
        inventions is determined by the Patent and Trademark Office 
        under well-established guidelines.
  --Universities filed over 4,267 new patent applications in fiscal 
        year 1997 in the expectation that they could generate revenues 
        in the form of licenses and royalties.\10\ The availability of 
        patents leads to an intense competition in the development of 
        life-saving drugs, biologics and devices. Patients in need of 
        new medicines and devices are the beneficiaries of this 
        competition.
---------------------------------------------------------------------------
    \10\ AUTM Licensing Survey, fiscal year 1997, Association of 
University Technology Manager, Inc. at 1.
---------------------------------------------------------------------------
  --Patents do not block university researchers from conducting 
        research on patented inventions. These researchers are 
        protected from a patent infringement law suit by an 
        ``experimental use'' exemption because they are not competitors 
        with a commercial motivation.
                  economic benefits of the partnership
    An often undervalued benefit of the NIH-biotechnology industry 
partnership is the substantial increases in U.S. economic activity. An 
overview of economic benefits are listed below.
  --In 1998, NIH received in royalties approximately $40 million (from 
        215 licenses). (See Appendix III.) This income helps to fund 
        additional research.
  --In 1997, of all federally funded university grantees the top ten 
        recipients of royalty income include: University of California 
        System ($67.3 million), Stanford University ($51.7 million), 
        Columbia University ($50.3 million), Florida State University 
        ($29.9 million), Massachusetts Institute of Technology ($21.2 
        million), Michigan State University ($18.3 million), University 
        of Florida ($18.2 million), W.A.R.F/University of Wisconsin-
        Madison ($17.2 million), Harvard University ($16.5 million), 
        Carnegie Mellon University ($13.4 million).\11\ This income 
        also helps to fund additional research.
---------------------------------------------------------------------------
    \11\ AUTM Licensing Survey, fiscal year 1997, Association of 
University Technology Manager, Inc. at 50.
---------------------------------------------------------------------------
  --In 1996, separate from paying licensing royalties, industry 
        sponsored $219 million in research at U.S. universities, 
        hospitals and research institutes, the overwhelming portion of 
        which is in biomedical research.\12\ (This research includes 
        sponsorship of clinical trials such as $40 million at 
        Massachusetts General Hospital and $33 million at the Mayo 
        Clinic.) This income is vital to the biomedical research 
        efforts of these institutions.
---------------------------------------------------------------------------
    \12\ AUTM Licensing Survey, fiscal year 1997, Association of 
University Technology Manager, Inc. at 145.
---------------------------------------------------------------------------
  --Over 2,214 U.S. companies were formed between 1980 and 1997 (333 
        U.S. companies were formed in 1997 alone) as a result of a 
        license of an academic invention.\13\
---------------------------------------------------------------------------
    \13\ AUTM Licensing Survey, fiscal year 1997, Association of 
University Technology Manager, Inc. at 1.
---------------------------------------------------------------------------
  --An economic impact model developed by Association of University 
        Technology Managers shows that, in fiscal year 1997, $28.7 
        billion of U.S. economic activity can be attributed to the 
        results of academic licensing (the majority of which came from 
        NIH), supporting 245,930 jobs. In fiscal year 1996, the 
        comparable figures were $24.8 billion and 212,500 jobs.\14\
---------------------------------------------------------------------------
    \14\ AUTM Licensing Survey, fiscal year 1997, Association of 
University Technology Manager, Inc. at 2.
---------------------------------------------------------------------------
  --These technology partnerships, and the patents on which they are 
        based, are particularly important to small biotechnology 
        companies. These companies tend to focus their research on 
        breakthrough technologies that come from basic biomedical 
        research. They also must have strong patent protection to 
        justify the risks they take. Most of these companies have no 
        revenue from product sales to fund research, thus, they depend 
        on venture capital and public market investors. In 1998, the 
        biotechnology industry lost $5.1 billion. Previous years have 
        had similar financial losses (1997, $4.1 billion loss; 1996, 
        $4.5 billion loss; 1995, $4.6 billion loss).\15\ The 
        biotechnology industry has never had a profitable year.
---------------------------------------------------------------------------
    \15\ Bridging the Gap: Ernst & Young's 13th Biotechnology Industry 
Annual Report at 4.
---------------------------------------------------------------------------
                threats to the nih-industry partnerships
    The effectiveness of the NIH technology transfer program has 
increased dramatically in recent years. The unconditional repeal of the 
``reasonable'' price clause in April of 1995 has been critical to this 
success. (For a listing of statements from health policy experts in 
favor of repealing the ``reasonable'' price clause see the Appendix 
II.)
    Congress should continue to support NIH's decision, and not 
reinstate the ill-conceived price review policy, by opposing H.R. 626, 
the Health Care Research and Development and Taxpayer Protection Act. 
To do so would jeopardize the gains we have seen in the effectiveness 
of the NIH technology partnership program. To expand this failed and 
counter-productive price review program to the NIH extramural program 
and the programs of other government agencies conducting or sponsoring 
biomedical research would further jeopardize the effectiveness of those 
programs and the entire biomedical research enterprise.
    The repeal of the price review policy by NIH was both decisive and 
justified. Among biotechnology companies the repeal has substantially 
increased interest in collaborating with the NIH and other Public 
Health Service (PHS) agencies. It reassures companies who enter into 
collaborations with NIH and PHS grantees that their agreements will not 
be subject to a pricing clause in the future. The ``reasonable price'' 
clause prior to April 1995 deterred companies from collaborating with 
NIH and decreased NIH's ability to transfer its basic research into 
marketable products.
    The principal technology transfer mechanisms are Cooperative 
Research And Development Agreements (CRADAs) and Bayh-Dole Agreements. 
(For a more detailed explanation of these technology transfer 
mechanisms, see Appendix IV.) Both agreements enable the NIH and its 
grantees to license technologies to biotech and pharmaceutical 
companies, and in return, the company pays NIH or its grantees royalty 
payments.
    The positive impact of the repeal is seen by the fact that after it 
was passed, the number of CRADAs rose from a low of 31 in 1994 to 166 
in 1998. The number of executed licenses grew from a low of 75 in 1993 
to a high of 215 in 1998. Royalties also grew substantially, from 
$13.494 million in 1993 to $39.563 million in 1998. (These figures are 
in the Technology Transfer Activity chart in Appendix IV.) These 
figures demonstrate the wisdom of the NIH decision to repeal the clause 
and the necessity of not reinstating a similar provision which would 
undermine research.
    In 1995 and 1996 amendments to the NIH appropriations bill were 
offered in the House of Representatives to reinstate the ``reasonable 
price'' clause. These amendments were decisively rejected.
    Recently H.R. 626 was introduced. BIO opposes this measure and 
urges Congress to strongly fund NIH research and not to pass such a 
bill. BIO believes the NIH's mission is research, not the pricing of 
medicines developed. Issues of pricing or access should only arise once 
a medicine has been developed and approved by the FDA. Raising issues 
of pricing or access during the research stage is premature and 
counter-productive. It undermines the ability of our companies to 
convince investors to fund a collaborative research program with the 
NIH. When medicines are developed from NIH basic research, then NIH has 
fulfilled its mission and deserves praise--and royalties--for its 
fundamental contribution to the advancement of science and to the 
health of our Nation.
            appendix i: business week r & d scoreboard 1995
    Business Week \16\ conducted the ``1995 R&D Scoreboard'' which 
measured the level of research and development investment per employee 
in U.S. companies. In this study, five of the top ten U.S. companies 
were biotechnology firms. The complete R&D chart is listed below.\17\
---------------------------------------------------------------------------
    \16\ ``1995 R & D Scoreboard,'' Business Week 3 July 1995.
    \17\ Companies in bold are biotechnology companies.

                                                    Average Expenditures
                                                         On Research Per
        Rank                                                    Employee

 1. Biogen..............................................     $210,653.50
 2. Genetics Institute..................................      114,942.50
 3. Genentech...........................................      112,029.80
 4. Immunex.............................................      102,719.10
 5. Amgen...............................................       91,265.80
 6. S3..................................................       82,548.30
 7. Adobe Systems.......................................       70,993.00
 8. Platinum Technology.................................       69,787.30
 9. Cirrus Logic........................................       68,745.60
10. Network Computing Devices...........................       68,308.00
   appendix ii: list of statements by public health officials on the 
                   failed ``reasonable'' price clause
    Reasonable price clauses ``discourage technology transfer and the 
development of new therapeutic products by imposing price restrictions 
that may limit the ability of any company to recover its costs of 
research and development. Royalty provisions or payments to reimburse 
the government laboratory for its costs or, in appropriate 
circumstances, the supply of clinical materials (rather than 
restrictions on the pricing of products) may be more appropriate 
mechanisms to fairly and appropriately compensate the government 
laboratory for the use of its technology in commercial development.'' 
Final Draft Report of the External Advisory Committee of the Director's 
Advisory Committee, The Intramural Research Program, National 
Institutes of Health, April 11, 1994.
    The NIH insistence on price controls ``nearly ruined the system,'' 
said Dr. Steven Paul, the former scientific director of the National 
Institute of Mental Health and a creator of the NIH technology transfer 
program. Cited by Dr. Robert Goldberg in ``Race Against the Cure: The 
Health Hazards of Pharmaceutical Price Controls,'' Policy Review, 
Spring 1994 (number 68) at 34.
    A report by the HHS Inspector General noted that the controversy at 
NIH over CRADA pricing threatens support for the program (Office of 
Inspector General, Dept. of HHS, Technology Transfer and the Public 
Interest: Cooperative Research and Development Agreements at NIH (OEI-
92-01100)(Nov. 93)). This report finds that the use of an arbitrary and 
unpredictable ``reasonable price clause'' is undermining the transfer 
of NIH patents to private companies. Many private biomedical research 
companies now refuse to participate in CRADAs. This fact undermines the 
rationale for appropriating so many billions of dollars to fund this 
basic research.
    Dr. Bruce Chabner, Director of the National Cancer Institute's 
(NCI) Division of Cancer Treatment, in testimony at a congressional 
hearing last year discussed specific instances in which companies have 
discontinued projects or suspended CRADA negotiations because of 
concerns raised by the ``reasonable pricing clause.'' Chabner noted 
that ``Other companies have simply refused to become involved with the 
NCI in early drug development . . . . NCI has no doubt that companies 
will not accept the risks of investing large sums in the development of 
a government product if their freedom to realize a profit is 
restricted. These companies are not willing to put their corporate fate 
in the hands of a government-appointed committee of experts. There are 
less risky ways for companies to make a profit.'' Testimony of Dr. 
Bruce Chabner, Director of the Division of Cancer Treatment, National 
Center Institute, before the House Subcommittee on Regulation, Business 
Opportunities and Energy of the House Committee on Small Business (Jan. 
25, 1993).
    The Committee to Study Medication Development at the National 
Institute on Drug Abuse states that the ``reasonable-pricing clause 
required in (DHHS CRADAs) in the last year has been identified by NIDA 
as a major deterrent to attracting private-sector partnerships...'' The 
Committee ``recommends a change in the reasonable pricing provisions of 
DHHS CRADAs so that licensees or manufacturers of medications know 
explicitly the ultimate pricing or pricing structure for their 
potential therapeutic agent.'' Development of Anti-Addiction 
Medications: Issues for the Government and Private Sector, Institutes 
of Medicine, 1994.
    An article cites NIH officials attributing the price control clause 
for the precipitous decline in CRADAs. ``Many pharmaceutical companies 
are reconsidering CRADAs, and NIH officials say four of the largest . . 
. have told NIH that they plan to forego new CRADAs unless the pricing 
clause is removed.'' Christopher Anderson, ``Rocky Road for Federal 
Research Inc.'', Science, 497 (October 22, 1993).
    The Cancer Letter published a draft ``Action Plan on Breast 
Cancer'' developed from a recent NIH conference convened by Secretary 
Donna Shalala which recommends ``increase(d) efforts to speed the 
translation of basic research into clinical applications'' and ``review 
of the reasonable pricing clause in relation to CRADAS, as they impact 
of the flow of industrial funds into clinical research and, thus, 
affect collaborations.'' Cancer Letter, March 25, 1994.

             APPENDIX III.--TECHNOLOGY TRANSFER ACTIVITIES: FISCAL YEAR 1993--FISCAL YEAR 1998 \18\
                                             [Dollars in thousands]
----------------------------------------------------------------------------------------------------------------
                                                                   Fiscal years--
             Activity              -----------------------------------------------------------------------------
                                        1993         1994         1995         1996         1997         1998
----------------------------------------------------------------------------------------------------------------
Invention Disclosures.............          232          259          271          196          268          287
Issued Patents....................          103          103          100          127          152          171
Executed Licenses.................           75          125          160          184          208          215
Royalties.........................      $13,494      $18,487      $19,388      $26,995      $35,692      $39,563
Executed CRADAs...................           41           31           32           87          153          166
----------------------------------------------------------------------------------------------------------------
\18\ On the web site of the National Institutes of Health (www.nih.gov/od/ott/nih93-98.htm)

         appendix iv: principal technology transfer mechanisms
    Cooperative Research And Development Agreement (CRADA).--A CRADA is 
an agreement through which researchers at the NIH and private companies 
negotiate terms for cooperative research and define the rights of the 
parties to use licenses for any patents which might be created as a 
result of the research. CRADAs are the cornerstone of the basic 
research partnerships between the NIH and the biotechnology and 
pharmaceutical industries. In many cases the corporate partner provides 
funding and other resources to conduct research at the NIH. This 
corporate partner will then take the new technology and develop a 
marketable product. (The figures in the chart on page 10 in Appendix 
III shows a direct relationship between increases in NIH funding and 
increases in both CRADAs executed and license income generated.) In 
fiscal year 1996 and fiscal year 1997 the number of CRADAs increased 
dramatically. This increase in CRADA activity also led to increases in 
patents issued to companies which, in turn, will likely lead to the 
approval of new drugs in the market place.
    Bayh-Dole Agreements.--A Bayh-Dole Agreement is the corollary to 
the CRADA for NIH grantees (universities and research institutions). 
Bayh-Dole Agreements are agreements between grantees and 
biopharmaceutical companies in which the parties define the licensing 
rights to patents that might be created and agree on how to share 
funds, materials, and scientists in the collaborative research effort. 
Bayh-Dole Agreements, like CRADAs, generate patent licensing income.
    Licensing of Patents.--These partnerships focus on the licensing of 
patents on basic biomedical research discoveries. These licenses are 
critical to the relationship between biopharmaceutical companies and 
NIH and its grantees. Without patents to protect the taking of an 
invention by a competitor, a company cannot justify its research 
investment. It is crucial that NIH and its grantees, therefore, secure 
patents on their inventions so companies that invest money to develop 
inventions can benefit from their investment. The licensing of a patent 
require companies to make royalty payments to the proprietary owner of 
the license (or licensor) based on any sales of products attributed to 
the licensed patent.
    The biotechnology industry expects to pay royalties as a part of a 
license agreement. Companies frequently license technology from one 
another, and the norm is to include royalty payments. It is important 
for NIH and its grantees to set royalty payment that are competitive 
with those that a company would expect to pay another company. 
Otherwise, companies would tend to seek technology from sources other 
than NIH or its grantees. The government has a reasonable expectation 
that its investment in research will be rewarded with royalty payments. 
No company would expect the government or its grantees to license 
technology without receiving a return on its investment. This return, 
in the form of royalty payments, can be used by the government to fund 
additional research.
    Small Business Innovative Research (SBIR) & Small Business 
Technology Transfer (STTR) programs.--The SBIR and STTR programs--
supported by federal government funding through NIH--provide funding to 
biopharmaceutical companies to conduct research and development of new 
or improved technologies that have the potential to succeed as 
commercial products. For 1998 the total estimated funding for SBIR and 
STTR programs combined was $280.6 million. These two programs are 
indispensable to the biotechnology industry as a source of seed capital 
for early stage biotechnology companies. BIO supports these programs 
and has worked with the NIH to provide recommendations on how to 
improve these programs and to assist in outreach to the biotechnology 
community. For specific funding levels for the SBIR and STTR programs 
see the chart on page eight

                 SUMMARY OF NIH SBIR AND STTR ACTIVITIES FISCAL YEAR 1993--FISCAL YEAR 1997 \19\
                                              [Dollars in millions]
----------------------------------------------------------------------------------------------------------------
                                                                            Fiscal years--
                                                     -----------------------------------------------------------
                                                         1993        1994        1995        1996        1997
----------------------------------------------------------------------------------------------------------------
STTRs (awards)......................................        NA          48          90         109         111
STTRs...............................................        NA          $4.7        $8.7       $13.9       $14.7
SBIRs (awards)......................................     1,011         943       1,038         967       1,251
SBIRs...............................................      $121        $128.7      $175.1      $184.9      $246.2
----------------------------------------------------------------------------------------------------------------
\19\ Contact Sonny Kreitman, Special Programs Officer, Office of Extramural Programs, National Institutes of
  Health ph: (301) 435-2688.

                                 ______
                                 
  Prepared Statement of Hon. Paula M. DeLaney, Mayor, Gainesville, FL
    Mr. Chairman: On behalf of the City of Gainesville, Florida, I 
appreciate the opportunity to present this written testimony to you 
today. The City of Gainesville is seeking federal funds in the fiscal 
year 2000 Labor, Health and Human Services, Education and Related 
Agencies Appropriations bill for an advanced body-worn computer system 
for the field paramedic to use in patient care, decision-support, 
communications and record keeping. The impact for the entire region is 
considerable, since this county serves as the regional center for much 
of rural north Florida's medical care, disaster management, and 
criminal justice services. The estimated cost of the system is 
$1,000,000, to be spread out over the three years it will take to 
complete the project.
    The provision of emergency medical services has been highly 
developed over the past two decades through research and assistance 
from the federal government. Through these developments there are many 
advanced life support systems in place, which are staffed with 
paramedics. The paramedics operate at the front line of every type of 
emergency in which people are at risk. These include vehicle accidents, 
fires, chemical hazards, explosions, and terrorist events, up to and 
including weapons of mass destruction (WMD). The complexity of 
knowledge required of paramedics to perform effectively in this wide 
variety of circumstances continues to rise exponentially. Yet, 
throughout the federal government there are tools being developed which 
have immediate application to overcome the complexity facing the modern 
emergency medical system. What is needed is an integration of hardware, 
information technology, decision-support programming and advanced 
communications technology to support the paramedic in this wide variety 
of lifesaving interventions. Although there are various components of 
this project in development for other purposes, there is no known 
research that would provide a similar system with national application 
to emergency field services. There will be applications of this system 
for a number of national priorities, including anti-terrorist 
operations, trauma treatment, and enhanced rural medical care.
    Paramedics in the field normally operate under direction of 
physicians at the emergency department. Caring for critical patients 
requires attempting to communicate a true picture of events to the 
physician. The paramedic must currently rely on a remote physician who 
is receiving limited information, to make an appropriate diagnosis and 
provide the correct treatment protocol. Yet, within the literature of 
emergency medicine there are hundreds of algorithms, akin to artificial 
intelligence, designed to correctly diagnose when complete information 
is provided in a specific sequence. These heuristic decision-support 
algorithms are complex and interact with each other. Computers are the 
only effective means to integrate the many complexities these 
interactions produce.
    Computers could be used with great success in the field except for 
two primary shortcomings:
    First of these is that the paramedic literally has his or her hands 
full with providing emergency care. (S)he cannot stop administering 
lifesaving care to enter data into a computer with a conventional 
keyboard, nor is the physician who is contacted by radio likely to 
either ask the questions in proper sequence or use the computer systems 
to furnish proper instructions. Handling hardware demands of a computer 
in this environment; outside, in all weather conditions, with poor 
lighting and dynamic events occurring, simply adds too much complexity 
to using this vital tool. Fortunately there have been recent 
developments in wearable computers. These are lightweight modules 
designed to fit in a belt-worn pack, which are then connected to a 
headset which has an eyepiece video display (which can also be equipped 
with a forward-looking video camera to record the wearer's eye view). 
The other components of the headpiece are a throat voice-activated 
microphone and earphone that allow two-way voice communication either 
with the computer or a radio system.
    The second shortcoming is similar. Until recently there have not 
been speech recognition systems that could reliably accept voice input 
for decision-support or recording of vital information. Today, however, 
there are several inexpensive speech-to-text and text-to-speech engines 
for computers, which enabling direct communication with databases and 
artificial intelligence (AI) systems.
    For the paramedic there is no transcriptionist. All records have to 
be reconstructed after the fact, from memory or from incomplete remote 
records from dispatcher reports and third parties. Sometimes a patient 
may be under the care of more than one service provider may. This can 
happen when a rural facility initiates care and the patient must be 
treated by first responders, followed by advanced providers and finally 
moved to a higher care level by a third caregiver, such as a helicopter 
flight crew. In this environment, the continuity of care may be 
maintained, but the records often become scattered, never reaching the 
final link in the chain. Incomplete or fragmented records mar most 
research into what works effectively in the field with paramedics. The 
use of a wearable computer, which is voice-activated, provides the 
ideal mechanism to review individual patient care to improve treatment 
proficiency, quality and training. The addition of a video cameral to 
that recording provides, literally, the complete picture.
    There is the another problem for emergency care systems, probably 
the most difficult to solve and most in need of solution. When 
confronted with ambiguous data, indicative of a number of patient 
conditions, the paramedic must rapidly gather and sort volumes of 
information, develop a treatment plan and, with guidance from a 
physician, attempt to restore stability. There are certain situations 
that are high criticality and low frequency. This means that the 
paramedic is unlikely to see the condition often, so it is unfamiliar. 
Simultaneously, the patient condition requires immediate and effective 
treatment for a survivable outcome. A few of these events include toxic 
exposures, multiple system trauma, complex rescue situations, and any 
other accidental or intentional event which leads to rare but lethal 
injuries.
    This is a request for $1,000,000 in project development money to 
demonstrate a wearable computer system for field medical personnel. It 
will integrate available civilian and military technologies. Its goal 
is effective information management, field diagnosis--especially for 
rare and complex disorders such as chemical toxin exposures or 
biohazard exposures--and finally a real-time record of the events. This 
prototype will provide the model for expert systems to be placed in 
every field medical environment in the nation. In rural regions it will 
provide access to the sophisticated support of trauma centers and 
specialty physicians. In the urban environment it will simplify and 
improve proper management of mass casualty events. These may be rare, 
but they require high readiness and complex handling. Such events could 
include biological terrorism, chemical weapons, or even significant 
accidental exposures to these agents. They also include medically 
challenging cases such as thermal burns, poison exposures, and quick-
acting illnesses, which threaten vital organ systems. The federal 
government has already funded the research that created the 
technologies to be used. There are military educational applications of 
this technology in use for aircraft maintenance. There are other 
applications in commercial development for inventory and maintenance 
applications, which are primarily data gathering or information recall 
systems. There have not been applications to the field practice of 
emergency medical care--a discipline that can produce an impressive 
return on development funding.
    The Gainesville Fire Rescue Department (GFRD) is the primary 
applicant. The department is a Florida licensed advanced life-support 
(ALS) provider for the municipality of Gainesville and a wide urban 
area surrounding the city. The total population served is approximately 
145,000 with an annual emergency call load of 20,000 emergency 
incidents, 15,000 of which are for emergency medical services (EMS). 
The department has a Regional Hazardous Materials Response Team 
providing training and emergency response to an eleven county area of 
North Florida. Except for its home county of Alachua, these counties 
are primarily rural with limited critical incident response capability. 
In addition, the department provides direct medical response services 
for the Gainesville Police Department's Special Response Team and the 
Alachua County Sheriff's Special Weapons and Tactics Team (SWAT). 
Paramedics who have completed the Department of Defense CONTOMS course 
are utilized in this role for support of high risk warrants and 
arrests, along with hostage or explosive device crises.
    The project will be a partnership with a research team from the 
University of Florida's Shands Teaching Hospital, Department of 
Anesthesiology. The project consists of hardware (wearable computer, 
micro-video camera, digital radio interface); and software (speech-to-
text, text-to-speech, heuristic decision support). These will be 
integrated into a body ensemble to be worn by field paramedics. Current 
medical and operational plans will be programmed into the computer to 
begin experiments with field use. This is a demonstration project to 
produce one limited use version of the device for continued 
experimental development. Results of the work will be shared as 
published research papers in medical journals, federal technology 
sharing publications, and journals common to emergency service 
providers.
    This system is expected to greatly enhance the quality of treatment 
for critical trauma patients, mass casualties from all causes, 
including exposures to biological or chemical weapons, and complex 
medical illnesses. The potential for development of future uses is 
immense, following demonstration of successful integration. The 
benefits will be of national significance by making available a 
developed system that can be replicated at reasonable cost. It will 
create a standard platform for innovation and development among other 
users. The development team will make use of existing civilian and 
military technologies wherever possible.
    The project will be divided into four phases. Phase one will 
involve research into existing technologies and development of a 
specification. Phase one will last 6 months and culminate in a document 
containing a detailed specification of the device to be developed and 
tested. Phase two will be development of a prototype system. Phase two 
will last 18 months. Phase three will be implementation and testing of 
the prototype and will last 9 months. Phase four will involve 
preparation of a final report and recommendations for further 
development and integration into EMS. It is quite possible that 
industry partners or further Federal funding will be obtained prior to 
completion of the project and that further development can continue 
uninterrupted.
    The total cost of $1,000,000 will be spread over a three-year 
period, as follows:
    Year 1--$338,000,
    Year 2--$332,120, and
    Year 3--$329,880.
    The results (deliverables) will be:
  --A prototype handheld or wearable computer with heads up display 
        (HUD) with additional components containing communications 
        software and capable of gathering vital signs information from 
        monitoring devices, and/or controlling therapeutic devices.
  --Medical algorithms for treating a variety of life threatening 
        conditions and an advisory system as part of a user friendly 
        intuitive interactive display with therapeutic options.
  --Systems to bi-directionally communicate medical information and 
        allow medical command to and from a remote location.
  --The system will be evaluated in actual emergency events and the 
        results published in research journals along with emergency 
        medical magazines.
    Thank you for the opportunity of presenting a unique opportunity 
for the design of a nationally significant tool for crisis intervention 
and successful lifesaving care. In fact, this innovation will have 
international impact as its full potential is realized.
                                 ______
                                 
 Prepared Statement of Robert M. Carey, Dean and James Carroll Flippin 
    Professor of Medical Science, University of Virginia School of 
                     Medicine, Charlottesville, VA
    Mr. Chairman, I am pleased to present testimony on behalf of the 
University of Virginia in Charlottesville, Virginia, and its School of 
Medicine of which I am privileged to be Dean. The School of Medicine is 
one of the nation's best centers of medicine and biomedical 
investigation attracting over $60 million per year of NIH funds. During 
the decade of the 90's, three Albert Lasker Awards and two Nobel Prizes 
have been received on the basis of biomedical science performed at the 
University of Virginia. Four of our basic science departments in the 
School of Medicine are ranked in the top ten. Our vision is to be a 
leader in the discovery, dissemination and application of knowledge 
that will optimize the health of our citizens.
    NIH funding has been absolutely critical in the achievement of our 
vision. For example, our renowned program in prostate cancer research, 
which is in the process of implementing gene therapy to prevent 
metastatic spread of the disease that kills, would not be possible 
without our National Cancer Institute Clinical Cancer Center, two large 
NIH program project grants, several individual NIH RO1-type research 
grants and the NIH General Clinical Research Center. Because all of 
these components are present in one institution, a working partnership 
has been created between basic scientists, translational researchers 
and patient-oriented clinical investigators. All of these parts are 
necessary to create an investigative environment that results in high 
impact.
    At the University of Virginia School of Medicine, three major 
discoveries leading to the earlier-mentioned prizes in this decade were 
highly dependent on NIH funding: the discovery of G-proteins as a major 
mechanism whereby cells convert external signals into function, the 
discovery of nitric oxide as a major dilator of blood vessels and the 
discovery that peptic ulcer disease is due to a bacterium, Helicobacter 
pylori, treatable with a combination of antibiotics. Indeed, every 
advance in medical science requires two kinds of NIH support: 
infrastructure funding to provide the appropriate environment and 
program funding to conduct the research itself. While the need for 
program funds is self-evident, infrastructure support, which is equally 
important, is often overlooked.
    Infrastructure support for biomedical science is at a crossroads 
today. Too little attention has been given especially to our research 
facilities in universities, which have not kept up with modern 
technology and many of which are woefully outdated. At the University 
of Virginia School of Medicine, for example, only one-third of our 
research space has been judged as excellent. One-third is adequate and 
one-third, which is 30 to 50 years old, is not capable of sustaining a 
modern biomedical research program. Almost all other medical school 
deans could tell you a similar story.
    The problem of quality of research space is compounded by rapid and 
unanticipated advances in biomedical technology. Only a few years ago, 
the technique of homologous recombination in genetics opened the door 
to genetically engineered mice. This marvelous approach now allows us 
to eliminate a gene from an animal to observe the consequences of its 
removal. This is a powerful tool in determining the function of 
proteins encoded by a gene, thus realizing the benefits of the Human 
Genome Project. These so-called ``knockout mice'' are adding much to 
our understanding of human biology and disease. Studies using these 
animals also form the basis for gene therapy. However, breeding these 
mice requires thousands of animals, which must be housed in a viral 
pathogen-free environment. Infection can result in loss of one, two or 
more years of work. The infrastructure at almost all universities, 
including our own, is insufficient to provide barrier facilities to 
house these valuable animals. This is posing a problem of crisis 
proportions in medical schools and other biological laboratories around 
the country.
    Support for infrastructure through the NIH will enhance 
institutional research capacity by renovating outdated facilities and 
building new ones, creating new approaches to the support of animal 
facilities, providing state-of-the-art instrumentation and other 
research equipment and promoting information and computer technology. 
Infrastructure support can be provided by increasing funding to the 
National Center for Research Resources, the research support arm of the 
NIH.
    Medical innovation and its successful implementation depend upon 
both the funding of promising areas of research and giving researchers 
access to modern laboratory facilities and equipment. As Dean of one of 
the nation's outstanding medical schools at the University of Virginia, 
I believe we need both to create a high level of stable research 
program funding and to establish an equitable policy for financing the 
construction, renovation and modernization of our biomedical research 
facilities. Thank you.
                                 ______
                                 
   Prepared Statement of Dr. Michael J. Novacek, Ph.D., Senior Vice 
       President and Provost, American Museum of Natural History
    Thank you Mr. Chairman for allowing me to submit testimony on 
behalf of the American Museum of Natural History to the Subcommittee 
today.
              about the american museum of natural history
    Founded in 1869, the American Museum of Natural History is one of 
the nation's pre-eminent scientific and educational institutions. For 
over 129 years, the Museum has pursued a mission of examining critical 
scientific issues and increasing public knowledge about them. 
Throughout the Museum's history, its explorers and scientists have 
pioneered discoveries that have offered us new ways of looking at 
nature and human civilization. The Museum has sponsored thousands of 
expeditions, sending scientists and explorers to every continent. This 
rich scientific legacy includes an irreplaceable record of life on 
earth in collections of some 32 million natural specimens and cultural 
artifacts that are an extraordinary research tool and represent the 
focus of science at the Museum. The Museum's power to interpret wide-
ranging scientific discoveries and convey them imaginatively has 
inspired generations of visitors to its grand exhibition halls and 
educated millions about the marvels of the natural world and the 
vitality of human culture. With four million visitors annually (of whom 
half are schoolchildren), and a staff of dedicated educators who seek 
to inspire curiosity and a desire to learn in both children and adults, 
the Museum is known as one of the nation's preeminent scientific and 
educational institutions.
    More than 200 active research scientists with internationally 
recognized expertise conduct more than 150 field projects each year. 
Museum scientists in the ten scientific departments are retracing the 
evolutionary tree, documenting changes in the environment, and 
describing the achievements of human culture--affecting the public's 
understanding of where we come from and where we may be headed.
    The Museum's ongoing research provides the foundation for its 
educational mission. The goals of its educational programs include 
increasing scientific literacy among both adults and children 
nationwide, addressing issues that affect our daily lives and the 
future of the planet and its inhabitants, and providing a forum for 
exploring world cultures. The recent Museum's launching of the National 
Center for Science Literacy, Education, and Technology in partnership 
with NASA helps to further these goals. In creating the National 
Center, the Museum and NASA recognized an opportunity to combine and 
leverage their incomparable resources. The National Center creates 
materials and programs that reach beyond our institutional walls into 
homes, schools, museums, and community organizations around the nation.
    The Museum actively continues a tradition of creating some of the 
greatest scientific exhibitions in the world. Early in the year 2000, 
the Museum will open the new Rose Center for Earth and Space, in one of 
the most exciting chapters in the Museum's long and distinguished 
history of science and education. The Rose Center includes a newly 
rebuilt and updated Hayden Planetarium that will allow visitors to 
journey among the stars and planets in our own galaxy as well as those 
of other galaxies; the Lewis B. and Dorothy Cullman Hall of the 
Universe, where interactive technology and participatory displays will 
elucidate important principles of astronomy and astrophysics; and the 
adjoining Gottesman Hall of Planet Earth (opening in 1999). In 
exploring the processes that determine how Earth works, the Hall will 
contain an array of fascinating natural samples that will include, 
among others, an ice core from Greenland that contains in its strata 
evidence of climatic shifts that occurred thousands of years ago and a 
massive fold of rock hewn from a quarry. Also on display will be the 
first-ever retrieved ``black smokers'' (chimney-like sulfide structures 
that grow at hydrothermal vents in the deep ocean), recovered this 
summer by Museum scientists and colleagues from the University of 
Washington with important support from NASA. The Rose Center for Earth 
and Space will enable the Museum to join science and education to 
provide a seamless educational journey taking visitors from the 
beginnings of the universe, to the formation and processes of Earth to 
the extraordinary and irreplaceable diversity of life and cultures on 
our planet.
              support for the national institute of health
    While not a traditional health institution, the Museum supports a 
tremendous amount of valuable research and educational programs that 
complement the goals of NIH.
    The Museum is currently showing a temporary exhibition entitled, 
``Epidemic! The World of Infectious Disease.'' The exhibition examines 
in detail the natural history of disease from biological and cultural 
vantage points. In emphasizing the delicate balance among 
microorganisms, humans, and other animals, and the environments in 
which they live, the exhibition underscores the importance of 
understanding the global nature of disease. Specific diseases, such as 
malaria, AIDS, and tuberculosis are used as examples to illustrate 
larger issues. Extensive educational programming including films, 
lectures, and a special children's ``Infection, Detection, Protection'' 
workbook accompany this exhibition.
    The Museum's research also supports the goals of NIH. With the 
advent of DNA sequencing, museum collections have become critical 
baseline resources for the assessment of the genetic diversity of 
natural populations. Genomes, especially those of the simplest 
organisms, provide a window onto the fundamental mechanics of life. 
Studying the DNA of nonhuman organisms, the sponsors of the research 
say, can lead to an understanding of their natural capabilities that 
can be applied toward solving challenges in health care. We believe 
that the Museum's accomplishments in this area support and complement 
the National Institute of Health's goals.
    The American Museum has a history of being at the forefront of 
conservation activities. In addition, the molecular systematics 
programs at the Museum are on the cutting edge in the use of DNA 
sequences in conservation and evolutionary research. The Museum houses 
two molecular laboratories that are directed by four curators from the 
Museum and one from The New York Botanical Garden. Current studies 
focus on a variety of endangered species representing diverse 
geographic and taxonomic scope, including: tiger beetles and moths of 
the Atlantic coast of North America, sturgeon of the Caspian Sea, 
muntjacs (small deer) recently discovered in Southeast Asia, lemurs and 
whales of Madagascar, spotted owls of the Pacific Northwest, tiger 
populations throughout Asia, and right whales around the world. Ancient 
DNA, essential for historical study of changes in genetic markers in 
endangered species, has been recovered from museum specimens of rare or 
extinct animals, as well as 25-million-year-old termites fossilized in 
amber.
    As more species become threatened and extinct, it is more critical 
than ever to catalogue and store the variety of life's natural genetic 
diversity so that it will be available far into the future. For these 
reasons, the Museum has launched a new effort to create a super-cold 
storage facility. Located in a new, state-of-the-art collections and 
laboratory building, this new storage facility will enable Museum 
scientists and researchers from around the world to perform unique and 
vital DNA research. Molecular techniques have revolutionized the study 
of biology, including conservation, evolution, and medicine. As part of 
our ongoing mission in collections-based research we propose expanding 
activities in the preservation of biological tissues and molecular 
libraries in super-cold storage for current and future genetic 
research.
    Better understanding of the natural arrangements of genomes and 
interactions among genes is driving, and will continue to drive, the 
development of novel therapies for disease. It is also clear that many 
genes of significant scientific and medical importance are found only 
in a few organisms. Such natural products are useful in ways we are 
only beginning to understand. Tissue collections such as the one we 
propose expanding at the Museum will preserve genetic material and gene 
products from rare and endangered organisms that may go extinct before 
science fully exploits their potential.
    Now in operation for eight years, the Museum's molecular 
laboratories have accrued tens of thousands of specimens. In the near 
future we plan to create a database not only for record keeping, but 
also to make this collection easily searched via the Internet and 
accessible for loans by scientists outside the Museum, including health 
researchers. We foresee increased loan activity as the fields of 
molecular systematics and comparative genomics continue to grow. 
Because tissues could be easily depleted by several requests, molecular 
libraries (DNA in fragments multiplied and stored in easily workable 
vectors) are or will be constructed for many of these specimens. Many 
of the tissues and molecular libraries in the Museum's frozen 
collection come from long-term field projects with extensively detailed 
data.
    Molecular information is important for understanding the history of 
life. In the past, the time and expense of DNA sequencing forced 
systematists to collect sequences from only one gene per species. A 
single set of character information is inadequate to represent the 
complexity of the organisms and their history. Fortunately, DNA 
sequencing technology has improved rapidly in the past five years 
(bases sequenced per unit time has increased at least tenfold). This 
improvement has allowed the Museum's molecular labs to address gaps in 
knowledge of biodiversity by sequencing DNA from rare, endangered, and 
understudied organisms. Concomitantly, Museum scientists are working to 
improve the theory and implementation of phylogenetic analysis of vast 
data sets of DNA sequences and other forms of biological information 
such as the anatomy of extant and extinct organisms. Sequence data are 
shared worldwide on NIH's Genbank database and via original scientific 
research disseminated in theses and peer reviewed publications.
                     museum collections and library
    The collections of the American Museum of Natural History are 
considered to be the largest non-federal Museum collection in America, 
and one of the largest and most significant biological collections in 
the world. The collections are organized around the departments of 
Entomology, Herpetology, Ichthyology, Invertebrates, Mammalogy, 
Ornithology, and Vertebrate Paleontology, and often include endangered 
and extinct species as well as many of the only known ``type 
specimens'' or examples of species by which all other finds are 
compared. The Museum's 32 million specimens and artifacts, collected 
over 129 years from the far corners of the earth, are all located on-
site to allow ease of access to scientists. Collections like those of 
the Museum are historical libraries of expertly identified examples of 
species and artifacts, associated with data about when and where they 
were collected. Such collections provide essential baseline data for 
Museum scientists as well as more than 250 national and international 
visiting scientists each year.
    Collections of the diversity of the natural world are the basis for 
the interrelated missions of the Museum: research, education, and 
exhibition. The Museum is similar to a research university with a 
faculty of 42 curators from diverse fields such anthropology, earth and 
planetary sciences, and all branches of zoology. Yet the Museum is 
distinct in the sense that the Museum's mission extends beyond research 
and teaching. Museum curators are active research scientists, 
exhibition advisors, and caretakers of ever growing collections of 
cultural artifacts and biological and geological specimens.
    The Museum is home to the largest unified natural history library 
in the Western Hemisphere. The collection is an important resource for 
students from the several dozen colleges and universities located in 
New York City and in the tri-state area, as well as researchers 
visiting from the far corners of the globe. The collection contains 
over 485,000 volumes, including books, journals, rare documents, 
photos, several hundred films, over one million photographic images, 
and is rich in retrospective materials, some dating to the 15th 
century.
    Highlights of the Library's collection include over 300 manuscript 
collections of notable naturalists and scientists; a unique collection 
of 13,000 rare books that spans over 500 years of scientific and 
expedition literature; and diaries and logs including Captain James 
Cook's account of Australia (1783), and Charles Darwin's Zoology of the 
voyage of ``H.M.S. Beagle'' (1839-43) which narrate and illustrate 
voyagers of exploration and discovery to new lands and habitats. New 
publications and current issues of journals are added to the library on 
an ongoing basis.
    The Museum's halls of vertebrate evolution provide an excellent 
example of the relationship between scientific collections and 
exhibition. In these halls, visitors walk directly along a phylogenetic 
tree indicated by a pathway on the floor. At each branch in the tree a 
visitor can stop and view fossils that exemplify sets of anatomical 
features that inform scientists about natural groups of organisms. The 
collections are also the source of the extraordinary ``Spectrum of 
Life'' exhibit in the new Hall of Biodiversity which includes more than 
a thousand expertly mounted specimens from 28 scientific 
classifications and is perhaps the worlds most comprehensive display of 
the diversity of life and its evolution. It includes interactive 
computer kiosks that visitors use to identify and interrelate organisms 
on evolutionary trees. The confluence of collections, evolutionary 
research, and beautiful exhibition makes these halls among most 
compelling educational features of the Museum.
    The Museum's Anthropology Department is nearing the end of a two 
decade collection storage upgrade and digitization project which was 
supported by the National Endowment for the Humanities and undertaken 
in order to allow more scholars greater access to these vital and 
magnificent collections. The new digital image database and 
accompanying electronic catalog allows the Museum to provide staff, 
visiting scholars, and off-site researchers with much-needed, easier 
accessibility. The storage facility upgrade, scheduled to be complete 
in 2002, will ensure that the artifacts are protected and stored for 
the study of generations to come.
     biological collection storage upgrade and digitization project
    With the successful anthropology storage upgrade and digitization 
project nearly complete, the Museum now turns its focus towards 
upgrading storage facilities and digitizing the biological collections 
for better preservation and improved data access. The Institute of 
Museum and Library Sciences has a distinguished history of supporting 
cutting edge collection and technological practices. We seek a 
partnership with IMLS that will allow us to be in the forefront of 
collection practices and a model for the nation.
Technological innovation for greater public access
    Biological science at the Museum centers on expert documentation of 
species and investigation of their evolutionary and ecological 
relationships. We seek support in fiscal year 2000 for our ongoing 
efforts to develop and expand model digitization initiatives so that we 
may share our collections with a broader audience while protecting the 
integrity of the objects for years to come. The digital imaging and 
electronic cataloging of many of the Museum's collections, coupled with 
the technological improvements in the Museum's education 
infrastructure, will allow the Museum to reach the new goal of sharing 
our library of objects with a national audience. For the first time, 
researchers across the nation and around the world will be able to 
easily access this valuable information.
    Due to the unparalleled interest in the Museum's collections and 
unwieldiness of the specimens a digital data base would be of great 
scientific and public interest. We propose a digital data base to allow 
digitized specimens and field data to be searched across many fields 
(for instance by locality or age). Detailed digital renderings would 
allow ready and safe access to often fragile archival material, and 
allow off-site workers to peruse the collection and strategically plan 
visits to the Museum. These last two matters are key. If a researcher 
can plan a visit with the help of the database the productivity of 
their visit to the Museum's collections will be significantly enhanced. 
We propose to develop a web front end to the digital database which 
will therefore make it available worldwide to those interested in 
natural history.
    In addition, the Museum plans a significant model digitization 
project for resources located in our natural history library. Support 
from IMLS will allow the Museum Library to collaborate with the 
scientific departments to create a valuable digital resource for 
students and scientists across the nation.
Collection storage facilities upgrade
    We seek support in fiscal year 2000 for our ongoing efforts to 
upgrade our collection storage facilities, many of which were built 
early this century. The Museum's collections are the heart and soul of 
our scientific research, permanent and temporary exhibitions as well as 
our education programs. The collections allow undergraduate, graduate, 
and post-graduate students, and even high-school students to conduct 
real research projects in intensive learning programs. Access to the 
Museum's collections is central to the work not only of Museum 
scientists but of scientists from around the world. As the collections 
grow, questions about how to curate them, including the issue of 
limited physical storage space, arise. While many similar institutions 
house their collections separately from their faculty, the Museum is 
committed to keeping its scientists, educators and collections together 
by expanding on site. In fiscal year 1998 we began construction on a 
new collections and research facility, the Natural Sciences Building, 
within the space enclosed by the 23 interconnected structures that form 
the Museum. The building will hold a substantial amount of new compact 
storage including a unique super-cold storage facility to allow for the 
preservation and future study of DNA, goals which can not be attained 
through traditional storage methods. We seek the partnership of IMLS 
for new storage equipment in the new Natural Sciences Building as well 
as other collection areas in the Museum.
    The American Museum of Natural History seeks $1,000,000 in support 
for critical upgrades to unique and vital specimen and library 
collection storage facilities, and to develop and expand model 
digitization initiatives.
                                 ______
                                 
     Prepared Statement of Cyrus M. Jollivette, Vice President for 
                          Government Relations
    Mr. Chairman and Members of the Subcommittee: I appreciate the 
opportunity to submit this statement for the record on behalf of the 
University of Miami in Coral Gables, Florida. The University is seeking 
your support for several important initiatives, all of which will 
provide great benefit for Florida and the nation.
    Founded in 1925, the University of Miami is the largest, most 
comprehensive private research university in the southeastern United 
States.
    With its main campus located in the suburban City of Coral Gables, 
the University of Miami currently enrolls 13,422 undergraduate and 
graduate students from all 50 states and 148 foreign countries. The 
University offers 110 undergraduate programs, 95 master's programs, 55 
doctoral programs and two professional areas of study through its 14 
schools and colleges. Students can choose from the following fields of 
study: architecture, arts and sciences, business, communication, 
continuing studies, education, engineering, international studies, law, 
marine and atmospheric sciences, medicine, music, and nursing. Of the 
1,865 full-time faculty members more than 97 percent hold a Ph.D. or 
terminal degree in their field. At its medical campus near downtown 
Miami, the University of Miami is best known for research in AIDS, 
cancer, diabetes, eye diseases, and spinal cord injury. The Rosenstiel 
School of Marine and Atmospheric Science on Virginia Key is one of the 
top three marine science schools in the nation.
    First, we seek your endorsement of our Joint Center for Pediatric 
Asthma and Respiratory Disease, at the University's Rosenstiel School 
of Marine and Atmospheric Sciences and the School of Medicine. Our 
objective is to establish a center for the Southern United States to 
conduct, promote, and support research into the effects of ambient 
particulate matter (PM) and other airborne constituents on human health 
to formulate future environmental regulations with a strong scientific 
foundation. University of Miami
    The Center will focus on airborne-particle/health issues in the 
southeastern United States--a region that is subjected to a wide range 
of airborne pollutant impacts. The levels of ozone and oxidants are 
seasonably very high over large regions and the rate of noncompliance 
with the ozone standards is increasing, resulting in a number of large-
scale, atmospheric, chemistry/pollution studies. Populations in coastal 
regions are impacted by other types of particles whose health-related 
properties have not been well characterized or understood, including 
the impact of wind-blown sea-salt; marine toxins, bacteria, and various 
marine micro-organisms. The Center will also provide expertise on 
matters relating to air quality and human health in the Southeastern 
U.S.
    My scientific and medical colleagues have defined seven specific 
objectives of the proposed research that will test the hypothesis that 
exposure to ambient (indoor and outdoor) PM significantly affects the 
cardiopulmonary response of susceptible populations of children and 
seniors. They will provide a broad-base of expertise in atmospheric 
chemistry (indoor and outdoor), exposure assessment, cardiopulmonary 
medicine, epidemiology, and public health.
    For fiscal year 2000, we respectfully request that you direct the 
National Institutes of Health to establish a research effort of this 
type based in southeast Florida for this important scientific and 
medical initiative.
    Next, Mr. Chairman, we seek your support of the Clinical Diabetes 
Islet Transplant initiative at the University's Diabetes Research 
Institute. The National Institutes of Health has announced a ground 
breaking clinical research initiative focused on Type 1 diabetes and 
one of its associated complications, kidney disease. The objective is 
to establish tolerance to transplanted tissue and cure diabetes by 
islet cell transplantation. The University of Miami Diabetes Research 
Institute will be the only non-government partner in this historic 
partnership, along with the National Institute of Diabetes, Digestive, 
and Kidney Diseases (NIDDK), the Naval Medical Research Center, and the 
Walter Reed Army Medical Center (WRAMC).
    This coveted NIH recognition is based on the DRIs achievements and 
commitment to islet transplant technology. During the past year, the 
DRI and the Naval Medical Research Center have obtained sufficient and 
compelling data from non-human primate experiments using highly 
promising monoclonal antibodies. These results have created great 
enthusiasm throughout the scientific community putting the DRI-Navy 
team literally months, if not years ahead of other centers in the 
search for a cure for diabetes.
    Responding to pressure from patient advocates and lobbying groups, 
together with increasing successes in pre-clinical research, the NIH 
has found itself obliged to address its lack of a clinical islet 
transplant program. It has, therefore, entered the islet 
transplantation arena via a new Navy-NIDDK Transplantation and 
Autoimmunity Research Branch. Of all existing diabetes centers, the 
University of Miami Diabetes Research Institute has been selected to 
help translate current research advances from the laboratory into pilot 
clinical trials in patients with Type 1 diabetes.
    For the DRI, the partnership represents an unprecedented 
opportunity to couple its unique and sought-after expertise with the 
vast resources of the federal government. It will provide the DRI with 
access to previously exclusive core facilities and limited antibodies 
to accelerate research. DRI will be able to make full use of its 
experience in both pre-clinical testing of the latest antibodies, and 
in the development of clinical research protocols aimed at establishing 
tolerance to transplanted tissues. The DRI will provide the NIH with 
islet isolation equipment and train their team.
    The NIH will utilize intramural funds to renovate one of its 
research hospitals, recruit necessary personnel, and acquire equipment 
and supplies for clinical trials for which the Diabetes Research 
Institute is not eligible. To date, private support provided all 
funding for the studies that led to this unique private-public 
partnership and will continue to bridge the funding gaps.
    The University of Miami Diabetes Research Institute is seeking to 
leverage private support and new federal support to enable it to take 
advantage of this historic opportunity which will contribute directly 
to finding a cure for diabetes.
    This new clinical transplant initiative will require new and 
renovated laboratories which must receive FDA validation prior to use 
in human trials. For fiscal year 2000, the Diabetes Research Institute 
seeks the Subcommittee's support to allocate $3 million in the NIH 
extramural facilities account for the renovation and construction of a 
Clinical Diabetes Islet Transplant Research facility for the Diabetes 
Research Institute in Miami, Florida.
    Next, the University of Miami, its School of Medicine, the 
Sylvester Cancer Center, the Courtelis Center for Research and 
Treatment and the Batchelor Children's Center have developed a major 
cancer collaboration of special relevance to ethnically diverse and 
minority populations, our national military workforce, and children.
    Cancer is the number two cause of death in America. It does not 
spare anyone based on their age, sex, ethnic background or socio-
economic status. We know that basic research will eventually lead to 
the causes and hopefully cures for this dreaded disease. However, 
research has already given us tools for prevention and early detection 
that will reduce the suffering from cancer until cures can be found. 
The programs that we have listed as part of our initiative will apply 
these tools in a variety of settings for prevention, control, and 
treatment, especially in multi-ethnic, diverse, minority populations. 
This translational approach to biomedical research, that is, applying 
the basic scientific knowledge we have already gained to populations in 
clinical settings, is a key component of the research at the University 
of Miami. By applying this knowledge, we can reduce the morbidity, 
mortality, and improve the quality of life for all our citizens.
    Florida is often called the ``bellwether state'' or ``window to the 
future'' for disease incidence. The state has been having a significant 
increase in some of the most common cancers among the minority 
populations including prostate and breast cancer. We are developing an 
ever-greater understanding of the potential and critically important 
areas of genetic differences, genetic susceptibility, genetic research 
and genetic epidemiology in developing effective cancer prevention and 
control programs. These cutting-edge research technologies also allow 
us to develop successful treatments for approaches to high-risk and at-
risk populations.
    Working with community-based research and intervention strategies, 
University of Miami scientists have developed a broad array of data on 
the attitudes of different minority populations toward cancer 
prevention, detection and treatment. An understanding of these 
populations places us in a unique position to apply the tools we have 
already developed to reduce cancer incidence. While the Sylvester 
Comprehensive Cancer Center has studies in many areas, there are major 
programs on early detection, treatment and prevention of prostate and 
breast cancer. These diseases are highly unpredictable, but tend to 
occur at younger ages and to be more aggressive in minority 
populations.
    We are seeking the allocation of $8.5 million for a Model Cancer 
Prevention and Control Program that is a collaborative effort of the 
Sylvester Cancer Center and the Courtelis Center which will utilize our 
focus and access to a nationally unique, unparalleled ethnically 
diverse, minority patient/population base to more fully and effectively 
develop, coordinate, and focus cancer prevention and control efforts. 
We are seeking to expand our concentrated clinical cancer research, 
treatment prevention and control strategies in five crucial areas: (1) 
early detection; (2) primary and secondary prevention research; (3) 
genetic epidemiology and research; (4) molecular epidemiology; and (5) 
expanded capacity of the research and treatment center. As a part of 
this collaboration, it is our intent to involve the Batchelor 
Children's Research Center to embrace its clinical capacity in 
pediatric bone marrow and cord blood transplantation. The Miami-based 
Batchelor Center is one of the nation's leading sites for this critical 
work. The final part of the collaboration provides for the enhancement 
of our Breast Cancer Early Detection Program to increase the number of 
women screened from an average of 15 per day to 50 per day, or a total 
of 12,500 women per year.
    Next, Mr. Chairman, we seek your support for a joint University of 
Miami/Florida State University Florida project that would enhance 
research and research training in health and aging at Florida State 
University through a collaborative effort between faculty associated 
with the Pepper Institute on Aging and Public Policy and faculty 
associated with the Center on Adult Development and Aging at the 
University of Miami.
    The goal will be achieved through the development of 
interdisciplinary program in Aging and Health Promotion that focuses on 
the multidimensional aspects of aging. The joint program will combine 
the social science strengths of Florida State University faculty and 
the biomedical and clinical strengths of the University of Miami. The 
program will help to increase the knowledge and interest of current 
faculty in health and aging issues, including both physical and mental 
health, and will support faculty in developing research skills 
applicable to the study of health and aging. The specific intent of the 
program is the expansion of research activities directed toward (1) 
disease prevention, (2) diagnosis and assessment of functional 
abilities, (3) intervention and development of strategies to compensate 
for age-related functional declines, (4) basic research on aging and 
health.
    Finally, the University of Miami proposes to create a unique, 
multi-media resource of Cuban research and teaching materials to be 
known as ``The Cuba Heritage Collection. ``The Cuban Heritage 
Collection will be housed in an area specifically designed to 
permanently store, display and provide non-destructive access to the 
materials making up the Collection. The Cuban heritage Collection will 
cover all aspects of Cuban history and culture, especially as it is 
reflected in the United States, and will be based on the University's 
existing, large and valuable Cuban Collection.
    In additional to the traditional access to the materials in the 
Cuban Heritage Collection, the University of Miami proposes to provide 
enriched indexing that will enable more efficient use of this 
information resource. The Collection will be accessible to off-campus 
scholars and students through the Internet and in published digital 
products.
    The University is seeking $3.5 million from the Labor, HHS, and 
Education Appropriations Subcommittee through the Institute of Museum 
and Library Services to create, develop, and implement the Cuban 
Heritage Collection.
    Mr. Chairman, we understand how difficult year this will be for you 
and the Subcommittee. However, we respectfully request that you give 
serious consideration to these vital initiatives, all of which have 
great implications and will provide exceptional benefits to the well-
being of the nation.
                                 ______
                                 
  Prepared Statement of John J. McDonough, Chairman of the Board, JDF 
International and Allison McDonough, Member, JDF Lay Review Committee, 
               Juvenile Diabetes Foundation International
    John McDonough. Mr. Chairman and Members of the Subcommittee, I am 
John J. McDonough, a husband, father, grandfather, volunteer advocate, 
and businessman. I am the Vice Chairman and CEO of Newell Rubbermaid 
Inc., and I'm pleased to be here today as the Chairman of the 
International Board of Directors of the Juvenile Diabetes Foundation.
    I thank you and the other Members of the Subcommittee for your 
strong support of medical research over the years. Last year's 15-
percent increase in NIH funding is moving us closer to a cure for 
diabetes and its complications. We are very much looking forward to 
working with you again this year to try to secure another 15-percent 
increase so that every identified diabetes research opportunity can be 
fully funded.
    My family strongly supports efforts to increase funding for medical 
research. Our desire to find a cure couldn't be greater. To date, our 
family has contributed $14.5 million dollars to JDF and will keep on 
giving until a cure is found.
    My wife, Marilyn, lost two of her aunts to diabetes. My paternal 
grandfather died from the complications of diabetes in the 1920s. He 
was ravaged by this disease just at the time insulin was becoming 
available. I have had insulin-dependent diabetes for 56 years, and my 
daughter Allison has had insulin-dependent diabetes for 16 years. 
Marilyn and I have 4 other children and 4\2/3\ grandchildren, with more 
to come, we hope. And we don't want to see any more of this disease 
that cripples and kills so many people every year.
    I remember the day I was diagnosed very clearly. I was in a large 
ward at a Chicago hospital, and my parents came in and told me I had 
something called diabetes. My father was simply devastated. He had 
married late, was then 50 years old, and it hadn't been that many years 
since he watched his father die from this disease. Thanks to my mother, 
I understood perfectly what I had to do. You see, she was a very modern 
lady, even 56 years ago. Like young parents today, she believed in time 
outs . . . the only difference being that her idea of a time out was 30 
seconds to rest her arm before cracking me again with my father's razor 
strap!
    From the time I was a child, I knew what I had to do to deal with 
this problem called diabetes, and I've done that all my life. There are 
probably few people who have worked harder at controlling my blood 
sugar levels than I have over a long period of time. Yet over 55,000 
shots later, my experience makes the point that insulin is not a cure 
and it doesn't prevent complications. It is merely life support. 
Despite good genes and excellent medical care, I've not been able to 
avoid some complications of this terrible disease, including the 
amputation of my left leg last September.
    We cannot become complacent. The research being done today is only 
a fraction of what needs to be done, and the relevant research that can 
be done today is limited only by the money available to fund it.
    Allison McDonough. I was diagnosed with diabetes in 1983 at the age 
of 25. My parents were devastated. Emotionally, my father felt he was 
to blame, even though intellectually he knew he had no control over my 
diagnosis. And my mother, who had watched her aunts die from the 
disease, now had the same fears for me that she had had for my father 
for so many years.
    When my father was diagnosed in 1943 at the age of six, he was told 
he would not live to be ten. At ten he was told he probably wouldn't 
live to be 20, and so on. He is fond of saying that he is not afraid of 
dying, but is afraid of not living. I, however, am afraid of both, and 
not just for myself but for my dad, and also the undiagnosed members of 
my family.
    Living with diabetes, with all its injections, blood tests and 
insulin reactions is a cumbersome and difficult full-time job, and 
there is no such thing as remission. Yet it's the constant dread of 
wondering when diabetes will strike our family again that I hate more.
    Last fall my father not only lost his leg, he almost lost his life. 
There was one week after the amputation in which his stump needed to be 
left open. Every day I forced myself to look into his open leg, 
searching for signs in his tissue that healing was taking place. He 
would cry and tell me not to look, and that it wouldn't happen to me. 
That hole in his leg has left a hole in my heart, and just as I forced 
myself to stare it down, I don't want my siblings or future generations 
of my family to ever have to stare down the truth about diabetes as we 
who live with it do. In my family I want this disease to end with me.
    John McDonough. Diabetes kills one person every three minutes and 
reduces life expectancy by 30 percent. The disease costs our nation $98 
billion dollars annually and absorbs one of every five Medicare 
dollars. While we at JDF work hard to raise funds to support research 
that is leading us closer to a cure, we need your help.
    As you know, the Diabetes Research Working Group established by 
your Subcommittee has issued a report, which includes a plan to attack 
the epidemic of diabetes and its complications. The report also 
contains a specific recommendation for the National Institutes of 
Health to provide $827 million dollars for diabetes research in fiscal 
year 2000, a level supported by JDF.
    We seek your help in securing this funding so that every parent can 
tell every child with diabetes that everything possible is being done 
to find a cure. We speak for all of our fellow JDF volunteers--both 
children and adults who suffer from diabetes and/or work on behalf of 
their loved ones--when we say that only a cure will suffice. Mr. 
Chairman, with continued support from you and the other Members of the 
Subcommittee, we will find that cure.
    Thank you for this opportunity to testify.
                                 ______
                                 
    Prepared Statement of Dr. James Crapo, Chairman, Department of 
         Medicine, National Jewish Medical and Research Center
    Mr. Chairman and Members of the Subcommittee, thank you for your 
support last year and the opportunity to present this testimony 
regarding the National Jewish Medical and Research Center's proposal to 
build an integrated Center for Environmental Health Research and 
Service (CEHRS). This Center will, under one roof, support research and 
provide clinical services for patients with respiratory and immune 
diseases with the mission of controlling or eradicating environmental 
and occupational illness in the Rocky Mountain Region. It will serve as 
a regional resource and national model for the delivery of 
environmental clinical health services, conduct both basic and field 
research on environmental illness, and ``translate'' new knowledge, to 
better inform the public and help guide rational environmental policy 
by government, at both regional and national levels.
    National Jewish Medical and Research Center is known worldwide for 
the diagnosis and treatment of patients with environmental, 
respiratory, immune and allergic disorders, and for groundbreaking 
medical research. For the past 20 years, this century-old nonsectarian, 
nonprofit medical center has earned an international reputation for its 
treatment of environmental illness and for research leading to the 
detection and prevention of environmental disorders including asthma, 
berylliosis, tuberculosis and building-related illnesses.
    With funding from Federal agencies including the NIEHS, NHLBI, 
NIAID, EPA, DOE, and CDC/NIOSH, as well as foundations and private 
industry, National Jewish has become one of the leaders in the field of 
environmental health. National Jewish is deeply committed to providing 
accessible, affordable and high quality care for environmentally and 
occupationally-exposed individuals, to consulting for government and 
industries in the region and nationally, and to educating medical 
professionals and the public on matters of environmental risk and 
health.
    Our nation faces a significant challenge for the 21st century--how 
to safeguard the health of the American public from environmental 
hazards. We are faced with the reality that many Americans, 
particularly the working poor, blue collar middle class, minorities, 
children and the elderly, are exposed daily to environmental toxins 
that may cause major lung, heart, immune and allergic diseases, 
disability and untimely death. We must find ways to better diagnose, 
treat and, most importantly, prevent environmental disease.
    Today federal agencies and corporations face the daunting task of 
cleaning up environmental ``sins of the past''--without unduly 
endangering the health of today's hazardous waste workers and the 
members of communities that surround them. The Colorado region 
inherited the environmental legacy dating back to the industrial 
revolution--large tracts of polluted land and buildings, including the 
former nuclear weapons plant at Rocky Flats and more than a dozen other 
sites of high contamination caused by past mining and other industry. 
While the state continues its efforts to clean up this toxic legacy 
little attention has been paid to addressing the environmental disease 
that has resulted from years of high levels of environmental 
contamination and pollution.
    The State of Colorado has historically been medically underserved, 
in environmental health services, with fewer than 40 medical 
practitioners in Colorado who are board certified to practice 
environmental and occupational health. While the Division of 
Environmental and Occupational Health Sciences at National Jewish 
provides consultation to industry, agriculture, community groups, and 
labor, its services are outstripped by the regional need for expertise. 
National Jewish is forced to turn away many patients and groups who 
have environmental concerns because of physical and staffing 
limitations at the Center. These needs range from community groups 
seeking advice on the hazards of radioactivity and of metal-
contaminated soil, to industries needing help in the control of lead 
poisoning and biological hazard exposures, to regional agencies seeking 
aid in the investigation of disease outbreaks caused by airborne molds 
or tuberculosis-like organisms.
    National Jewish is uniquely positioned in the Rocky Mountain region 
to serve as such a model health care institution for implementing 
innovative environmental health programs that reduce the risk of 
respiratory and immune system disease.
    Regionally and nationally, the diseases that are treated at 
National Jewish Medical and Research Center are on the rise, including 
asthma, diseases due to environmental tobacco smoke, building-related 
respiratory and allergic illnesses. National Jewish Medical and 
Research Center specializes in helping both small and large regional 
employers address practical issues of toxic exposure assessment, 
exposure control, medical management of occupational illness, and 
remediation. Employees and their employers, while aiming to make the 
workplace safer and more productive, often lack enough information 
about the toxic effects of airborne chemicals, metals, and organic 
matter that produce disability. Recent studies show that 1 in 10-
hospital admissions is related to a workplace injury or exposure. More 
than half of all patients seen in general medicine clinics in the 
central U.S. report past or ongoing exposure to one or more known 
toxin.
    The solutions to these environmental health dilemmas are to prevent 
exposures from causing disease and, if environmental exposures have 
already occurred, to detect disease earlier and to develop more 
effective treatments for disease.
    National Jewish can best increase our effectiveness by housing 
these major activities in a single, dedicated location. At this time, 
the activities, staff and leadership for environmental medicine and 
research are scattered across the three-block National Jewish Campus. 
The goal is to construct a building that will help to consolidate all 
environmental health research and services. The CEHRS will be a 
showcase for the application of the most advanced environmental science 
and directly to the prevention of disease in groups of Americans at 
environmental risk. By showing how a multidisciplinary approach can 
help eradicate environmental respiratory and allergic diseases, our 
Center will be a model for other centers around the country who may 
address other forms of environmental illness, such as those linked to 
skin disease, neurologic disorders, liver disease, and cancer. National 
Jewish Medical and Research Center believes that by maintaining a tight 
focus of both clinical care and research in an area of great need--the 
respiratory and immune systems--its Center will be able to deliver long 
term solutions to the most important forms of environmental disease.
    The CEHRS will meet this need by integrating the following program 
components in the new Center:
    The Clinic for Environmental and Occupational Health Care.--A 
combined adult and pediatric outpatient clinical practice staffed by 
experienced environmental and occupational health physicians and nurses 
who diagnose and treat environmental disorders. Annually, this clinical 
group screens and evaluates more than 2,000 patients with suspected 
environmental or occupational lung and allergic disorders.
    The Environmental Disease Prevention and Research Service.--A 
multidisciplinary team of physicians, basic science researchers, 
epidemiologists, industrial hygienists, and health educators who work 
directly with individual patients to measure airborne exposures to 
toxins and who implement innovative programs that detect the effects of 
chemicals in individuals and in the air. This service conducts 
practical research aimed at ``real life'' problem solving. For example, 
this Unit develops and tests the effectiveness of medical surveillance 
programs in industry. The goal is to devise practical, cost-effective 
solutions to reducing risks of cancer, lung fibrosis, and allergic lung 
disease.
    The Environmental Away-Team Consultation Service.--A mobile 
consultation service staffed by a team of environmental and 
occupational health experts who go anywhere in the country to measure 
environmental exposures, monitor for disease, and advise industrial and 
agricultural employers, labor, and private citizens on the management 
and control of environmental hazards. This service has gone on-site to 
more than 20 states.
    The Respiratory Protection Program.--A mobile service that helps 
individuals and corporations to educate and provide appropriate types 
of masks for people being potentially exposed to airborne hazards. 
Firefighters, hazardous waste workers, municipal employees, and others 
who encounter potentially lethal exposures to highly toxic materials 
call on this service.
    The Environmental Education/Community Ourteach Service.--A risk 
communication service that utilizes the internet as well as more 
traditional educational approaches to deliver up-to-date, balanced, 
practical environmental information to civic groups, labor, industry, 
and local and federal government agencies.
    The Occupational and Environmental Medicine Training Program.--
Based at National Jewish and the Department of Preventive Medicine and 
Biometrics at the University of Colorado School of Medicine, this is 
the only training program for environmental medicine in the state of 
Colorado.
    The Environmental Toxicology Section.--A research unit dedicated to 
understanding oxidative stress--a process that occurs during the body's 
conversion of fuel to energy. This oxidative process produces disease 
when undesirable oxidant gases or dusts are inhaled, causing 
inflammation.
    The Environmental Immunology Laboratory.--A research unit dedicated 
to understanding how environmental toxins, including metal dust and 
bioaerosols such as latex and bacteria, cause allergic diseases.
    At this time, National Jewish is the only academic research 
facility in Colorado that provides clinical care for patients with 
suspected environmental or occupational illnesses. It is one of the 
only centers in the nation that is recognized for expertise in 
environmental and occupational lung and immune disorders. Patients from 
the region as well as from all 50 states come to National Jewish 
Medical and Research Center for medical diagnosis and care. Patients 
receive superior care without regard to their ability to pay. Each year 
$7 to $10 million of free or heavily subsidized care is provided each 
year. Additionally, National Jewish has the only physician training 
program in the state that produces doctors who can be certified as 
experts in environmental and occupational medicine.
    National Jewish was recently ranked as the best hospital in the 
nation for excellence in treating respiratory diseases in U.S. New and 
World Report's ``America's Best Hospitals.'' American Health magazine 
termed National Jewish one of the finest U.S. hospitals in allergy, 
immunology and pulmonology for both adult and pediatric patients. The 
Institute for Science and medicine rated National Jewish among the top 
10 independent biomedical research institutions--of any kind--in the 
world, and the only one that also provides patient care. It was ranked 
as one of the three most influential research institutions for 
immunology and as the number one private immunology research 
institution in the world.
    Partnerships with other academic institutions.--National Jewish has 
close affiliations on many research, educational and clinical projects 
including affiliations with: The Department of Preventive Medicine at 
the University of Colorado Health Sciences Center, researchers at the 
University of Colorado Boulder and Denver campuses, the Department of 
Industrial Hygiene at Colorado State University, and a number of 
governmental and non-profit research organizations in the region.
    Partnerships with governmental agencies.--In addition to conducting 
research directly funded by several agencies, National Jewish faculty 
provide advice and consultation to local, regional and Federal 
government offices, including: the Colorado Department of Health and 
the Environment, the Governor's Air Toxics Science Advisory Committee, 
the U.S. Department of Energy Beryllium Standard Advisory Committee, 
oversight Boards for Hanford Reservation in Washington State, the 
Nevada Test Site, and Los Alamos National Laboratories, the EPA air 
pollution research advisory panel, and the OSHA Metalworking Fluids 
Standards Advisory Committee, and both CDC/NIOSH and NIH research 
advisory committees.
    Partnership with community health organizations.--Faculty members 
conduct community outreach, speaking at local hospitals on 
environmental health. Three of our faculty have served as presidents of 
the Rocky Mountain Academy for Environmental and Occupational Medicine, 
the regional society for all physicians practicing in this field.
    Partnership with regional industry and labor.--National Jewish has 
helped organize and conduct medical education and medical surveillance 
programs for many regional industries, helping them to protect 
employees from hazards in the workplace.
    National Jewish proposes to establish a public/private partnership 
with the Federal Government in support of the establishment of the 
``Center for Environmental Health Research and Service.'' This 
partnership will cover the cost of the construction of a new, 50,000 
square foot, state of the art facility which will house all basic and 
clinical environmental research, clinical care, outpatient services, 
training and consulting services affiliated with the Environmental 
Health Research and Sciences program.
    The Department of Health and Human Service's, Health Resources and 
Services Administration (HRSA), directs national health programs which 
improve the health of the Nation by assuring quality health care to 
underserved, vulnerable, and special-need populations and by promoting 
appropriate health professions workforce capacity and practice, 
particularly in primary care and public health.
    The activities proposed at the Center for Environmental Health 
Research and Service are in keeping with HRSA's mission of detecting 
and alleviating unhealthful conditions of the environment as well as 
for providing appropriate primary, supplemental and clinical care for 
diseases caused or aggravated by the environment compliment and forward 
HRSA's multifaceted mission.
    The total cost of the proposed facility is $14 million. National 
Jewish received a $1 million HRSA grant from this Subcommittee last 
year to carry out the initial phases for the construction of the CEHRS. 
National Jewish seeks $5 million in HRSA follow-on funding in fiscal 
year 2000 to help construct the new Center.
    Thank you.
                                 ______
                                 
        Prepared Statement of the National Psoriasis Foundation
    Mr. Chairman and Members of the Appropriations Subcommittee: Thank 
you for allowing the National Psoriasis Foundation (NPF) this 
opportunity to present written testimony to the committee on the 
subject of NIH appropriations, particularly as regards skin disease 
research conducted through the National Institute of Arthritis and 
Musculoskeletal and Skin Diseases (NIAMS).
    We write you as advocates for 7 million American men, women and 
children with psoriasis--a chronic, debilitating skin disease. 
Psoriasis is a common disease that affects one person in fifty, and yet 
it is a disease without a cure and without universally effective 
treatments. Until a cure or more effective treatments are found, 
millions of people with psoriasis face a lifetime fighting this 
disease.
    We write to urge the committee to approve an increase of 15 percent 
over current funding levels for NIAMS for fiscal year 2000. This 
increase, which would further the commitment to double the NIH budget 
in five years, is critical to the ability of our nation's scientists to 
uncover the secrets of diseases such as psoriasis, which cost our 
nation so much.
  --Over three billion dollars are spent annually on psoriasis 
        treatment
  --Each year psoriasis patients make approximately 2.4 million visits 
        to dermatologists
  --Each year several hundred people with debilitating psoriasis are 
        granted disability by the Social Security Administration
  --One person in five with psoriasis has disease that interferes with 
        their ability to perform everyday tasks, including employment 
        and childcare
    Psoriasis is chronic, unpredictable and often unrelenting. 
Treatments may be successful for only relatively short periods of time 
for only some people. The thick, red, scaly patches on any or all parts 
of the body can limit daily activities and interfere with physical, 
occupational and psychological functions. Skin affected by psoriasis 
may itch, burn, sting, and easily bleed. Physically, psoriasis can 
range in severity from mild to disabling. Three-quarters of a million 
of the people diagnosed with psoriasis are under the age of 10.
    As many as 20-30 percent of people with psoriasis, over one million 
people, also suffer from an associated arthritic condition, psoriatic 
arthritis. Psoriatic arthritis can also cause significant disability 
and impairment of quality of life.
    The occupational impact of psoriasis and psoriatic arthritis not 
only poses a significant economic burden for this nation but also a 
significant hardship for the person with psoriasis:
    ``I started dealing with psoriasis fairly recently. My ears were 
afflicted for years--then my scalp started. And I went to the 
dermatologist. That was in January 1998. Since then, the psoriasis has 
increased and covers practically my whole scalp, both ears, and is now 
on my face.
    `` Although I realize I am one of the lucky ones, as I have had 
only fairly minor complications and have very little truly visible 
patches, it is an extreme bother. Missing out on playing with your 
kids, being ostracized as a child, would be the worst! And I'm very 
concerned that it could advance to that stage without effective 
treatment.
    ``I've spent lots of money--nothing compared to what my insurance 
company has spent--to fight psoriasis. In the course of a year, I have 
tried approximately 10 different shampoos--to no avail. I've also tried 
at least that many topical solutions--and none of them have worked. 
(Some relieved my symptoms temporarily.) To mention nothing of the 
rounds of injections I've received in my scalp--only to have the 
symptoms go away for merely a week or so.
    ``I've wasted seemingly endless amounts of time attempting to 
combat the disease. Going to the doctor, going to the pharmacy, 
researching, and trying out the newest prescriptions. Not to mention 
the time it takes to care for your psoriasis and the frustration it 
causes. And the concern that it will appear in other places, become 
even more of a problem (get infected, etc.)
    ``I'm young and a professional. Having `dandruff,' constantly 
scratching, having blotches all over your face, or having `greasy' hair 
from the topical medicine of the day is completely unacceptable in the 
workplace. It makes people think that you don't take care of yourself 
and aren't `put together'--presenting a poor professional picture and 
perhaps ultimately working against your career. The symptoms can be 
truly embarrassing. And my sister tells me that it's taboo to talk 
about it with others.
    ``As with any disease that doesn't have a cure at present, research 
is the only way.''
                                 Catherine Schelin, Washington, DC.
    Moderate-to-severe psoriasis, which affects as many as 2 million 
American men, women and children, dramatically inhibits a person's 
ability to maintain a normal, healthy, active lifestyle. Plaques on 
large areas of their skin may restrict their movement and the pain and 
itching often disrupts their sleep and their ability to work. Psoriasis 
on the palms of the hands or the soles of the feet can be disabling, 
preventing people from grasping a pen, holding their child, walking or 
standing.
    These people have psoriasis that cannot be controlled by simple 
topical treatments. To manage their disease they require expensive, 
inconvenient phototherapy radiation treatments in a doctor's office, or 
oral systemic medications that put the patient at risk of serious side 
effects. Some types of psoriasis require hospitalization and can even 
be life threatening.
    Emotionally, psoriasis can be devastating. The social rejection and 
physical suffering of psoriasis has led people to suicide. Many 
psoriasis sufferers struggle throughout their lives with pain, 
embarrassment, and shattered self-image.
    ``This disease can be incredibly frustrating, discomforting, and 
embarrassing. Every person with psoriasis has their own way of coping 
with this chronic disease, whether its feelings of depression, denial, 
shame, or a sense of loneliness. My life has changed in many ways. And 
as a result, I have become very active in my business career and try 
not to focus on how psoriasis affects every day of my life. Whether it 
has limited my ability to wear shorts in the summer, inhibited me from 
playing sports, or prevented me from pursuing a personal relationship 
for almost 4 years, it has scarred me emotionally. I have gone from 
being a very confident, outgoing young man to somewhat of a loner when 
it comes to pursuing a personal relationship.''
                                           Steve Wiseman, Maryland.
    Like diabetes, arthritis, and heart disease, psoriasis requires 
lifelong treatment. Indeed, a recent survey shows that 48 percent of 
Americans would actually prefer to have heart disease, asthma or 
diabetes, all of which are life-threatening, instead of psoriasis.
    ``Sometimes, I wonder whether suffering from an internal condition, 
such as diabetes or heart disease, would make life easier. Instead of 
people staring and making horrible remarks, people would be 
sympathetic. We live in a shallow world and people with external 
problems (psoriasis, eczema, and other physical handicaps) have to face 
the brutal nature of our world on a daily basis.''
                                           Steve Wiseman, Maryland.
    Unlike diabetes or heart disease, however, psoriasis is not a top 
priority for many researchers or pharmaceutical companies. But thanks 
to focus and funding provided by NIAMS, recent research has identified 
several possible sites for the genes that may cause this inherited 
condition. Scientists tell us that a real cure for psoriasis will come 
from these critical genetics studies.
    Other research has begun to pinpoint the autoimmune component of 
the disease, providing valuable targets for drug development. Many of 
the same autoimmune processes that researchers have discovered at work 
in diseases such as rheumatoid arthritis and Crohn's disease are also 
active in psoriasis. For instance, researchers are now finding that 
testing new therapies in psoriasis can be an effective way to determine 
if a new drug is safe and if it may work in these other diseases. This 
research must be aggressively continued, as research in one disease may 
very well benefit others.
    Effective treatments and a cure for psoriasis are within reach, and 
sufficient funding will enable medical science to complete the puzzle 
and find a cure for this chronic, costly, and devastating disease. This 
will not only benefit the seven million American children and adults 
now suffering with this chronic disease, but will also help the 200,000 
people who are diagnosed each year with new cases of psoriasis.
    Better treatments or a cure for psoriasis will result in savings 
both to the public and the government in treatment costs, lost 
workdays, and Social Security disability claims. Beyond these valuable 
dollar measurements, an increase in federal spending for such 
biomedical research will directly result in an immeasurable improvement 
in the quality of life for these millions of affected Americans.
    Therefore, on behalf of the members of the National Psoriasis 
Foundation, and the 7 million Americans with psoriasis, we again 
strongly urge you to approve an increase of 15 percent over current 
funding levels for NIAMS for fiscal year 2000. This increase will have 
significant health and socioeconomic benefits for the millions of 
Americans who are affected by psoriasis and by other diseases under the 
purview of NIAMS.
    Thank you for your time and your support.
                                 ______
                                 
  Prepared Statement of the American Society of Tropical Medicine and 
                                Hygiene
    Mr. Chairman and members of the Committee, the American Society of 
Tropical Medicine and Hygiene (ASTMH) is pleased to have the 
opportunity to present its views on fiscal year 2000 funding priorities 
to the Committee.
    The ASTMH, founded in 1903, is a professional society of 
approximately 3,500 researchers and practitioners who are dedicated to 
addressing the growing global threat of tropical infectious diseases. 
The collective expertise of our members is in the areas of basic 
molecular science, medicine, vector control, epidemiology, and public 
health. ASTMH is the principal voice for tropical medicine research 
within this country.
    A strong U.S. research agenda relating to infectious diseases is 
critical at this time when the ease of travel and openness of trade 
exposes the world's population, including U.S. citizens, to new and re-
emerging infectious disease agents. In 1993, more than 27 million 
Americans traveled to the developing world risking infection from the 
many emerging and re-emerging infectious and tropical diseases. In 
1998, an outbreak of severe chicken influenza in Hong Kong publicly 
raised the specter of another influenza pandemic such as that 
experienced in 1918, killing over 20 million globally. Two years ago it 
was Cyclospora, a parasite which entered the country via raspberries 
and lettuce imported from Central America. And we are all now familiar 
with the re-emergence of tuberculosis and emergence of new diseases 
such as Hantavirus respiratory syndrome within the U.S.
    More than 30 new human pathogens have been recognized in the last 
25 years. It also is evident in our new world economy that, in addition 
to humanitarian reasons, investments that help ensure healthy 
populations in developing countries contribute to the economic 
stability of these nations, which benefits the world's population as a 
whole. We must continue to be vigilant in our efforts to control and 
eradicate infectious diseases through prevention, treatment, and 
continued surveillance. As we approach the 21st century, it is time to 
protect our national security against biological and chemical attacks 
and declare war on infectious disease and antimicrobial resistance.
                  national institutes of health (nih)
    Mr. Chairman, the ASTMH thanks you and members of the Committee for 
your strong leadership in support of biomedical research funding. As a 
result of the 15 percent increase provided to the NIH in fiscal year 
1999, new scientific and research opportunities are being pursued that 
hold the potential to enhance the quality of life for all Americans and 
improve health outcomes around the world. Your actions reflect the 
extraordinary importance of biomedical research to our national 
interest and are also helping to attract growing numbers of young 
scientists to the fields of academia and basic and clinical research.
    ASTMH commends Congress for pursuing budget increases that will 
effectively double the NIH budget by fiscal year 2003. Accordingly, we 
strongly support a 15 percent increase for NIH in fiscal year 2000 as 
advocated by the Ad Hoc Group for Biomedical Research. An appropriation 
of $18 billion for NIH in fiscal year 2000 will allow promising 
research avenues to be pursued, including the development of new 
vaccines and treatments for diseases such as malaria, dengue fever, 
cholera, diarrheal diseases, HIV/AIDS, and a myriad of other viral 
bacterial, fungal and parasitic disease agents.
         national institute of allergy and infectious diseases
    The NIH's tropical disease research program is funded primarily by 
the National Institute of Allergy and Infectious Diseases (NIAID) and 
there are several important on-going issues relating to NIAID's 
research efforts that we would like to highlight.
    Malaria.--Globally, infectious diseases are the leading cause of 
morbidity and mortality, accounting for 1-3 times the mortality and 
morbidity resulting from heart disease, cancer and stroke combined. Of 
these infectious diseases, malaria continues to be the most devastating 
with a World Health Organization estimate of nearly 500 million 
clinical cases and up to 2.7 million deaths annually. Every 30 seconds 
a child somewhere dies of malaria. Even in the U.S., over 1,000 cases 
of malaria are reported every year, with local transmission being 
documented by the Center for Disease Control and Prevention (CDC) in 
California, Florida, New Jersey, New York, Texas, Michigan and Georgia.
    The Society applauds NIH Director Dr. Harold Varmus and NIAID 
Director Dr. Anthony Fauci for their continued leadership at home and 
abroad in advancing the international collaborative research project, 
the Multilateral Initiative on Malaria, and for implementing NIAID's 
Research Plan for Malaria Vaccine Development. Malaria is a complex 
disease and its control will require a significant research effort in 
vaccine development as well as other research areas. We are pleased 
that NIH recognizes this and is willing to commit significant resources 
towards solving this problem. We urge the Committee to be supportive as 
well.
            international tropical disease research programs
    NIAID's support for international tropical disease research is 
critical for advancement of our scientific understanding of emerging, 
re-emerging and other tropical diseases. Through these programs, U.S. 
researchers are able to collaborate with their colleagues worldwide in 
efforts that are absolutely mandatory to gain research expertise in 
areas endemic for tropical infectious diseases. The International 
Collaborations in Infectious Disease Research and the Tropical Disease 
Research Units are two programs in particular have been critical in 
these efforts.
    For example, the International Collaborations in Infectious Disease 
Research program supported collaborative studies conducted by Johns 
Hopkins University that have led to the development, standardization 
and application of a diagnostic assay, under field and clinical 
conditions, for infection with Taenia solium, the pig tapeworm that is 
responsible for neurocysticercosis in humans. This test is the current 
standard for the serological detection of infection and is providing a 
more reliable assessment of the extent of the disease in Peru and other 
countries. These collaborative studies in Peru have demonstrated that 
oxfendazole is an inexpensive, effective and safe single-dose therapy 
for cysticercosis in pigs.
    Tropical Disease Research Units have assisted research conducted by 
the University of California, San Francisco, that has led to the 
validation of cysteine proteases of trypanosomatid protozoa as targets 
for drug development. A number of chemical compounds have been 
synthesized and have been shown to inhibit the parasite enzymes and to 
cure animals experimentally infected with Trypanosoma cruzi and 
Leishmania spp., the causative agents of human Chagas Disease and 
leishmaniasis, respectively. Lead compounds are being evaluated for 
their toxicological and pharmacological properties. Preliminary 
evidence indicates that these lead compounds are selectively toxic for 
the parasites and exhibit clinically useful pharmacological properties.
                      fogarty international center
    The Fogarty International Center (FIC) is a unique component of NIH 
whose mandate is to support training in biomedical research on behalf 
of the developing nations of the world. The ASTMH membership 
acknowledges the significant contributions of the FIC/NIH in overall 
support of tropical disease research of direct vital importance to 
American travelers, servicemen, missionaries, Peace Corps volunteers, 
and foreign service officers, among others. Less obvious are the 
indirect benefits of training in tropical disease research for our 
foreign biomedical counterparts. Healthier workforces are more 
productive and contribute to the economic health and stability of 
developing countries, and global peace. Support for disease control 
activities is not only right for humanitarian reasons, but it is also 
serves our national interest.
    Many of the university and private corporate investigators and 
clinicians in ASTMH have benefited from the professional interactions 
with foreign scientists sponsored by FIC. Much of the FIC investment is 
recycled in U.S. universities and laboratories on behalf of outstanding 
foreign trainees and their American sponsors. The modest investment in 
the FIC has had a major impact on global disease control and has led to 
important scientific discoveries resulting in improved health outcomes 
here at home and around the world. We urge the Congress to provide a 15 
percent increase for the FIC in fiscal year 2000.
            centers for disease control and prevention (cdc)
    The ASTMH also strongly supports CDC activities to combat 
infectious diseases. We thank the Committee for the $24.7 million 
increase provided to CDC's infectious diseases program in fiscal year 
1999. We are especially pleased with the increases provided for the 
National Center for Infectious Diseases emerging and re-emerging 
infectious diseases program.
    The ASTMH supports the Administration's fiscal year 2000 budget 
request of $181,926,000 for CDC infectious diseases programs, an 
increase of $44 million over the current year budget. This level of 
funding will enable the CDC to implement its strategic plan to protect 
the public from new and re-emerging infectious disease and new threats 
to our nation's domestic health over the next five years, ''Preventing 
Emerging Infectious Diseases: A Strategy for the 21st Century.'' As we 
enter the new millennium, the CDC must enhance efforts, working with 
other U.S. agencies and international organizations, to combat 
infectious disease, continue to ensure the safety of the nation's food 
supply, address the growing problem of antimicrobial resistance, and 
build our nation's capacity to respond to threats of bioterrorism.
    Recent Senate hearings on bioterrorism have exposed how ill-
prepared we are at the present time to protect the public in the event 
of a biological or chemical warfare attack and highlighted the urgent 
need to strengthen the country's public health infrastructure's 
capacity to respond under such circumstances . The proposed fiscal year 
2000 budget request for the CDC focuses on the need to develop 
emergency preparedness at all levels of government, including 
establishing a training/technology transfer program for state-of-the-
art rapid diagnosis to state and local health departments to support 
and strengthen our public health laboratories, and improve surveillance 
and reporting systems.
    The fiscal year 2000 budget request will also enhance the National 
Food Safety Initiative as part of an ongoing effort to build a national 
early warning system for hazards in the food supply. Funds allocated to 
the CDC will be used to enhance surveillance and outbreak investigation 
capabilities at all levels of government, conduct detailed analyses of 
the economic impact of food borne outbreaks, and design training and 
education tools to assist health professionals in the diagnosis of food 
borne pathogens by laboratorians and provide school health education 
regarding food safety.
                               conclusion
    As the 20th Century comes to a close we must change our vision of 
U.S. national security. We are at war, but this time infectious 
diseases are our enemy. Infectious disease agents have no respect for 
political borders, and social or economic status do little to ensure 
safety from new diseases or those re-emerging as a consequence of drug 
resistance or other causes. To be prepared for a battle that 
undoubtedly will intensify, we must have adequate surveillance systems 
and modern infrastructure, coupled with scientific expertise in both 
basic and clinical research, if we are to develop the tools necessary 
to rapidly respond to, and control, the threats posed by infectious 
diseases.
    The ASTMH greatly appreciates your support of these activities. We 
urge you to continue your efforts to double the NIH budget over the 
next five years and towards this end we request a 15 percent increase 
for the NIH budget in fiscal year 2000. We also request that the 
Committee support the Administration's proposed increase of $44 million 
for the CDC's emerging infectious diseases activities.
                                 ______
                                 
     Prepared Statement of the Spina Bifida Association of America
    On behalf of the Spina Bifida Association, please accept this 
testimony to the Committee record. SBAA applauds the subcommittee for 
the 14.7 percent increase in NIH funding for fiscal year 1999 and 
thanks the Subcommittee for a 12.5 percent fiscal year 1999 increase 
for the CDC. Through the appropriation of funds for spina bifida 
research, you will provide a vehicle to greatly improve the health and 
welfare of persons with spina bifida, the number one most frequently 
occurring permanently disabling birth defect in our country today.
    The Spina Bifida Association of America was founded in 1973 and 
serves as the national representative of over 70 affiliates, chapters, 
and group members nationwide and represents children and adults with 
spina bifida, their family members, health care professionals, allied 
health professionals, educators, and interested members of the general 
public. The mission of the Spina Bifida Association of America is to 
promote the prevention of spina bifida and to enhance the lives of all 
affected.
    Spina bifida is the most frequently occurring permanently disabling 
birth defect. It affects approximately one out of every 1,000 newborns 
in the United States. More children have spina bifida than muscular 
dystrophy and cystic fibrosis combined. Spina bifida results from the 
failure of the spine to close during the first month of pregnancy. In 
most cases, the spinal cord protrudes through the back covered only by 
skin or a thin membrane. Surgery to close the back is performed within 
24 hours after birth to minimize the risk of infection and to preserve 
remaining function in the spinal cord.
    Spina bifida is one of the most devastating of all birth defects. 
It affects an individual neurologically, orthopedically, and 
urologically. It is typified by hydrocephalus, paralysis and mobility 
impairment, and bowel and bladder incontinence. Conditions associated 
with spina bifida include seizure disorders, malformation of the brain 
stem, scoliosis, tethered spinal cord, respiratory disorders, sleep 
apnea, central auditory processing disorders, gastrointestinal 
disorders, sexual dysfunction, attention deficit disorder, 
immunological disorders, decubitus ulcers, urinary tract infections, 
severe depression, arthritis, limb deformities, and chronic pain. The 
average lifetime medical cost for a person with spina bifida is 
$535,000. However, the cost in many cases exceeds $1.2M. It is not 
uncommon for a child with spina bifida to undergo four to six major 
surgeries before they reach the age of three, and ten to twelve 
surgeries before their tenth birthday.
    Incredibly, the incidence of spina bifida can be reduced by 50-75 
percent, if all women of childbearing age would consume 0.4 mg of folic 
acid, a B vitamin, daily prior to becoming pregnant. The U.S. Public 
Health Service made the daily consumption of folic acid to decrease the 
incidence of spina bifida a formal health recommendation in September, 
1992. Unfortunately, less than 13 percent of women are aware of the 
health recommendation, and the frequency of occurrence of folic acid 
preventable spina bifida remains unchanged.
    Although there has been research in the area of preventing spina 
bifida and some understanding secondary conditions, there has been 
very, very little research done in the areas of treatment protocols for 
persons with spina bifida and in identifying effective intervention 
strategies to prevent spina bifida's many associated conditions. This 
year NIH expects to sponsor research grants totaling approximately 
$8.9M on spina bifida research within the National Institute on 
Neurological Disorders and Stroke (NINDS) and the National Institute of 
Child Health and Human Development (NICHD).
    Today we are witnessing America's first generation of adults living 
with spina bifida. 95 percent of children born with spina bifida have a 
condition known as hydrocephalus, a swelling of the brain caused by a 
build-up of cerebrospinal fluid. Prior to the late 1960's and early 
1970's most children born with spina bifida died, but the widespread 
use of the shunt in the late 60's changed this. The shunt is a small 
tube that is inserted immediately after birth which drains excess fluid 
from the brain to the abdomen eliminating hydrocephalus. Now, 85-90 
percent of babies born with spina bifida survive into adulthood, 70-80 
percent have normal IQs, and the first generation of persons with spina 
bifida are surviving into and beyond young adulthood. And, with no 
change in the frequency of occurrence of spina bifida prior to 1992, 
and very little decrease since 1992, their numbers are growing, and 
will continue to grow. Persons with spina bifida total in excess of 
70,000 and the number is increasing by several thousand each year.
    We request that the Subcommittee to consider two areas of funding. 
The first is to support a NIH Consensus Conference to identify and to 
evaluate the existing scientific data regarding spina bifida and to 
develop a plan that prioritizes research that identifies early 
intervention strategies and treatment protocols that prevent or lessen 
the most pressing conditions affecting persons with spina bifida. The 
second is to appropriate additional funding to the CDC to allow them to 
vigorously promote the U.S. Public Health Service folic acid spina 
bifida prevention recommendation to reduce the incidence of occurrence 
of spina bifida.
                        nih consensus conference
    As the first generation of persons with spina bifida grows into 
adulthood, their care is an emerging health discipline. But, the road 
map is unclear and fragmented, signposts few, and facts elusive. A 
review of the published medical literature provides minimal information 
about aging issues and secondary conditions among persons with spina 
bifida. Moreover, there is very little information regarding the impact 
of commonly practiced interventions over a lifetime. There is sparse 
scientific evidence indicating which protocols are successful. Research 
areas and secondary conditions that have been recognized as issues 
began as anecdotal stories. With the exception of $8.9M in fiscal year 
1999, very little is being done to discover strategies and promote 
health and wellness for persons with spina bifida.
    Persons with spina bifida experience lifelong debilitating medical 
conditions. Individuals with spina bifida experience recurring and 
debilitating urinary tract infections. Treatment often requires 3 to 5 
days of hospitalization with IV antibiotics. Each episode, of which 
there are many, for each person with spina bifida, is painful, costly, 
and life disruptive. We need effective protocols to predict and manage 
this recurring condition.
    Disturbingly, there is growing evidence, that many persons with 
spina bifida in their late teens and twenties suddenly die from brain 
stem collapse. Also, anecdotal stories are widespread that cancer 
occurs at higher rates in persons with spina bifida. We need to find if 
and why this is true.
    Learning disabilities and attention deficit disorder are also 
problems that seem to occur in persons with spina bifida. Very little 
research has been conducted on the person with spina bifida and 
learning disabilities or, more specifically, in identifying the role of 
the shunt as a precursor to learning disabilities.
    As many as 73 percent of persons with spina bifida are allergic to 
latex as measured by history or blood tests. Reactions can be as severe 
as life threatening changes in blood pressure and respiration. Yet we 
are surrounded by latex from clothing to toys to medical equipment. 
What precautions can the person with spina bifida take? How can we best 
educate the health care field to this hidden danger for persons with 
spina bifida?
    The questions are many, the answers are few, the histories spotty, 
the treatment trial and error. An NIH Consensus Conference is the much 
needed first step in the process to evaluate the minimal scientific 
data, sort out the science, prioritize issues and research, and develop 
a plan for action.
              increase cdc budget for folic acid awareness
    We have the means to prevent the occurrence of spina bifida by up 
to 75 percent if we could only educate women to consume folic acid. 
That's a reduction of up to 75 percent of persons experiencing the 
devastating medical conditions I have described. It is also a reduction 
of up to 75 percent of the staggering medical cost of $535,000 
associated with each case of the birth defect.
    We must educate the 60 million American women of childbearing age 
to consume 0.4 mg of folic acid daily prior to becoming pregnant. In 
the United States almost 4,000 pregnancies per year or 12 pregnancies 
per day are affected by spina bifida and anencephaly. Any woman can 
have a child with spina bifida. Ninety-five percent of all affected 
pregnancies occur among women with no history of birth defects in their 
families. Women who have previously had a spina bifida affected 
pregnancy are 20 times more likely to have additional affected 
pregnancies. Hispanic women and Caucasian women of Celtic descent have 
a higher risk. In short all 60 million American women of childbearing 
age are at risk of having a child born with spina bifida.
    Although we do not fully understand the developmental failure that 
causes spina bifida, we do know that 50-75 percent of spina bifida 
births are preventable when women of childbearing age take 0.4 mg every 
day before they become pregnant. The reason the folic acid needs to be 
consumed prior to becoming pregnant is that the neural tube develops in 
the first 18-30 days of pregnancy, often before a woman realizes she is 
pregnant.
    An essential vitamin, folic acid plays an important role in cell 
division and growth. In addition to ensuring the healthy development of 
the fetus, it is beneficial throughout life in the maintenance of cells 
particularly along the internal and external linings of organs. Some 
studies have linked folic acid to a reduction in heart disease, 
cervical and colon cancers, and the reduction in risk of other birth 
defects such as cleft lip, cleft palate, and heart defects. SBAA 
supports further research in this area, but more importantly recognizes 
the immediate need to substantially increase the CDC budget for public 
awareness and education campaigns and widespread dissemination of the 
1992 U.S. Public Health service recommendation.
    The pressing need for greater education and awareness is supported 
by a 1998 March of Dimes survey conducted by the Gallup Organization 
under a grant from the Centers for Disease Control and Prevention. The 
survey revealed the following about women and folic acid:
  --Most women, who take multivitamins containing the B vitamin folic 
        acid, take them too late to prevent spina bifida.
  --Only 29 percent of American women 18-45 years of age who are not 
        currently pregnant take a daily multivitamin containing folic 
        acid. For those 18-24 years, the percentage drops to 19 
        percent, yet this age group accounts for 32 percent of all 
        births in the U.S.
  --The number of women who have heard of folic acid has increased from 
        52 percent in 1995 to 68 percent today. Yet there has been no 
        corresponding increase in the number of women taking a 
        multivitamin containing folic acid every day.
  --Only 13 percent of those surveyed knew folic acid prevents birth 
        defects, and only 7 percent knew that folic acid needs to be 
        taken daily before pregnancy.
    Sadly, the epidemic of epidemic of folic acid preventable spina 
bifida continues unabated.
    The Spina Bifida Association of America is requesting the 
subcommittee to increase the existing $1.5 million CDC folic acid 
awareness budget to $20 million, the amount recommended by the National 
Task Force on Folic Acid. Compared to the average medical cost, and 
medical cost only, of $535,000 for each person with spina bifida, the 
current budget figure pales embarrassingly. SBAA understands budgetary 
constraints, but our requested increase for CDC is modest when compared 
to the cost per incidence and the numbing prospect of living a life 
affected by this devastating birth defect.
    Spina bifida, many Americans find it difficult to pronounce; many, 
many more Americans do not realize that the population of persons with 
spina bifida is growing and aging; they are not aware of the depth of 
spina bifida's life long medical odyssey. Eighty-seven percent of the 
60 million women of childbearing age in the United States do not know 
that up to 75 percent of spina bifida births can be prevented. And, 
these are situations we can not ignore. An NIH Consensus Conference 
will begin the process of improving the quality of life for the tens of 
thousands of persons with spina bifida. Greater support of folic acid 
education and awareness efforts through an increase in CDC funding will 
benefit countless numbers of yet to be born Americans.
                                 ______
                                 
  Prepared Statement of Michael Q. Ford, Executive Director, National 
                     Nutritional Foods Association
    My name is Michael Ford. I am Executive Director of the National 
Nutritional Foods Association (NNFA), a trade association representing 
3,000 independent health food stores and 1,000 manufacturers, 
distributors and suppliers of natural health products, including 
organic and natural foods, natural ingredient cosmetics and dietary 
supplements.
              congressional mandate mirrors citizen demand
    National interest in access to and reliable information on safe, 
effective vitamins, minerals, herbs, amino acids and other dietary 
supplements has grown steadily since the Dietary Supplement Health and 
Education Act (DSHEA) unanimously passed the House and Senate to become 
the law of the land in 1994.
    Approximately 100,000,000 Americans are taking dietary supplements, 
spending, by some estimates, as much as $11.5 billion a year in health 
food stores alone. Americans are looking to safe, natural alternatives 
to prescription drugs to treat and prevent disease, and to maintain 
good health by supplementing inadequate diets with vitamins and 
minerals.
                 nutrients can prevent chronic disease
    We are entering a new era of recognition of the value of natural 
pathways to good health. For example, the Food and Nutrition Board of 
the National Academy of Sciences, which devises Recommended Daily 
Allowances for nutrients for the Food and Drug Administration, has 
issued the first of a series of reports presenting revised nutrient 
intake guidelines. Originally introduced in 1941, RDAs were intended to 
prevent classical nutrient deficiency diseases nearly extinct in the US 
today, such as scurvy, beriberi and rickets. Now, these reports are 
revising and expanding RDAs to reflect compelling evidence which 
supports the use of nutrients to help prevent chronic disease, such as 
osteoporosis. We agree with the Chairman of the Food and Nutrition 
Board, who last year characterized this approach as ``. . . a major 
leap forward in nutrition science.''
    Similarly, the report of the President's Commission on Dietary 
Supplement Labels endorsed continued research on the benefits of 
dietary supplements in health promotion and disease prevention. The 
Commission hailed the increasing research-based documentation of the 
benefits of dietary supplements in maintaining health and preventing 
chronic disease and other health-related conditions, and called for 
continuation of this welcome trend. NNFA continues to endorse the 
Commission's recommendation that, `` the public interest would be 
served by more research that assesses the relationships between dietary 
supplements and maintenance of health and/or prevention of disease.''
          herbs and botanicals are beneficial, cost-effective
    In addition to support for these kinds of exciting new findings on 
the health benefits of nutrients, NNFA urges the Committee to support 
research on medicinal herbs and botanicals, also classified as dietary 
supplements under the DSHEA. The results of a study on ginkgo biloba, 
published recently in the October 22, 1997 Journal of the American 
Medical Association, indicates that administration of this herbal 
extract, recognized for centuries in Chinese medicine for its ability 
to stimulate and improve blood circulation in the brain, could delay 
the onset of Alzheimer's Disease for up to six months. This could 
represent tremendous savings of lives and dollars from a disease which 
costs society $90 billion a year. Other studies show saw palmetto more 
effective than prescription medicine at reducing benign prostate 
enlargement, with far less expense and no reportable side effects. And, 
on the day before I testified before this Committee last year, Harvard 
University announced the results of a 14-year study of 80,000 nurses, 
concluding that large amounts of vitamin B6 and folic acid could 
prevent heart attacks by an astounding 51 percent.
    Millions of Americans are turning daily to herbal remedies and 
seeking primary health care from the alternative, holistic providers 
who prescribe them. There is an urgent need for a dramatic increase in 
support for research on herbs and botanicals, justified by consumer 
demand and the Congressional intent expressed in DSHEA. The Dietary 
Supplement Commission report recommends that, ``. . . Federal agencies 
continue to support research on the health benefits and safety of 
dietary supplements. Research should be expanded beyond the 
traditionally supported areas associated with vitamin and mineral 
supplements and include research on some of the more promising 
botanical products used as dietary supplements.'' NNFA whole-heartedly 
agrees.
    Ours is one of the few cultures in the world for whom the 
prevention and treatment of disease with non-prescription herbal 
medicines is the exception rather than the rule. This is largely due to 
the fact that foreign research oftentimes is deemed unacceptable by the 
Food and Drug Administration for use in justifying health claims for 
herbs and botanicals. We urge the Committee to provide the adequate 
funding for research on the safety and benefits of medicinal herbs.
         full funding for the nih office of dietary supplements
    The Office of Dietary Supplements (ODS) was established at the 
National Institutes of Health by DSHEA, to stimulate, coordinate and 
disseminate the results of research on the benefits and safety of 
dietary supplements in the treatment and prevention of chronic disease. 
Though authorized at $5 million per year by DSHEA to carry out its 
lofty mission, ODS has been woefully underfunded and allotted fewer 
than 2 full-time employees (FTEs). Despite these severe financial 
constraints, ODS has done an admirable job in attempting to meet its 
mandate. While this is commendable, the Congressional mandate for ODS 
is yet unmet.
    NNFA agrees with the President's Commission on Dietary Supplement 
Labels that the ODS must be fully-funded at $5 million. Says the 
Commission report, if fully-funded, ``. . . ODS could play a valuable 
role in providing consumers with information about dietary supplements 
. . . including [the] promotion of scientific studies on potential 
roles of dietary supplements in health promotion and disease 
prevention. Appropriations as authorized by DSHEA are essential if ODS 
is to meet [the] mandates of the Act.'' ODS deserves this Committee's 
support and that of the NIH itself. In particular, we urge continued 
funding for the botanical research initiative which began this year at 
the ODS.
            office of complimentary and alternative medicine
    In 1992, Congress directed the National Institutes of Health to 
establish the Office of Alternative Medicine with the expressed task of 
assuring objective, rigorous review of alternative therapies to provide 
consumers reliable information. Funding for the Office has grown since 
its creation, and last year this Committee recognized that the fiscal 
year 1998 funding of $20 million provided for this office was an 
absurdly infinitesimal percentage of the overall NIH budget. Thanks to 
the profound interest of this Committee, in fiscal year 1999, the 
Office of Alternative Medicine became the Center for Complementary and 
Althernative Medicine, with a $50 million budget and authority to set 
its own agenda. This has given alternative research a well-deserved 
boost and is more in line with the health choices of most Americans.
    Indeed, findings from the ``National Survey of Alternative Medicine 
Use,'' published in the January, 1993 New England Journal of Medicine, 
reveal that Americans made an estimated 425 million visits to 
alternative medical therapy providers in 1990, exceeding the 338 
million visits made to all US primary care providers that year. The 
survey also showed that out-of-pocket expenditures associated with 
alternative therapies totaled $10.3 billion in 1990, approaching the 
$12.8 billion in out-of-pocket expenses incurred for all U.S. 
hospitalizations during the same period.
    NNFA asks the Committee to continue this most welcome trend. We ask 
that the NIH National Center for Complementary and Alternative Medicine 
receive an increase in funding for fiscal year 2000 that is at least 
equal in percentage to the overall increase Congress provides for NIH.
                demonstration projects at ahcpr and hfca
    The Agency for Health Care Policy and Research (AHCPR) is often 
directed by the Committee to pursue projects designed to research the 
cost-effectiveness attendant to novel approaches to the treatment and/
or prevention of illness. The time is right for investigation of the 
worthiness of certain dietary supplements, based on well-designed, 
cost-effectiveness research.
    Every year, treatment of chronic conditions and illnesses--from 
flus and colds to hypertension to dementia and Alzheimer's disease--
generates enormous publicly and privately funded health care 
expenditures. There exists an opportunity to trim such burgeoning costs 
through prevention and/or treatment of these chronic ailments--or delay 
of their onset--with safe, effective, low cost dietary supplements. 
NNFA is confident that basic research at NIH can lead to appropriately 
structured, cost/outcome research at AHCPR which would demonstrate the 
value of dietary supplements in comparison to contemporary medical 
intervention. This evidence can, in turn, lead to HCFA projects to 
determine if a policy of reimbursement could be established.
    Despite the growing popularity and demand for herbs and nutritional 
supplements, and their widespread use for prevention and intervention 
of chronic illness, precious few large-scale outcome studies on 
American populations are available to give health professionals the 
information they need to make decisions on alternatives to contemporary 
medical approaches. Echinacea and goldenseal have been shown to be 
effective in preventing and treating colds and flus; ginkgo has been 
show to forestall dementia and the onset of Alzheimer's disease; 
herbal/nutritional combinations have been shown to provide control for 
hypertension without the side effects which cause many patients to stop 
using their prescription medicine; similarly, saw palmetto effectively 
shrinks benign prostate enlargement without side effects affecting 
normal body function.
    NNFA believes that a sufficient body of botanical and nutrient 
research may exist in certain instances, to whet AHCPR's appetite and 
to warrant Congressional consideration of cost-effectiveness studies in 
this area.
    NNFA urges the Committee to consider directing AHCPR to work with 
the Office of Dietary Supplements and the Office of Complimentary and 
Alternative Medicine to review the existing outcome research on dietary 
supplements. The AHCPR could then investigate the feasibility, under 
appropriate protocols, of developing cost-effectiveness projects 
designed to compare the value of herbs and other dietary supplements in 
the treatment and prevention of chronic illness to typical medical 
approaches. The areas I have mentioned are but a few of the many 
possibilities which urgently present themselves for research and 
evaluation. Once the necessary biomedical and cost-effectiveness 
research have been completed, NNFA urges the Committee to direct HCFA 
to investigate the potential reimbursement for promising alternative 
therapies and treatments involving nutritional supplements and herbs.
    a sound investment in the health and well-being of all americans
    Science and experience ably demonstrate a wealth of benefits 
attendant to the regular use of vitamins, minerals, amino acids, 
enzymes, herbs and botanicals--all classified by DSHEA as dietary 
supplements. Dietary supplements are allowing millions of American 
consumers to take charge of their own good health by safely and 
effectively preventing and treating a host of illnesses and conditions. 
The body of research supporting use of these products is impressive, 
but sorely requires immediate and dramatic expansion. NNFA urges the 
Committee to undergird the Congressional mandate expressed in DSHEA by 
investing in the scientific research which holds the key to our 
knowledge of the remarkable importance and value of dietary 
supplements.
    Thank you.
                                 ______
                                 
  Prepared Statement of the National Depressive and Manic-Depressive 
                              Association
    The National Depressive and Manic-Depressive Association (National 
DMDA) is pleased to have this opportunity to submit written testimony 
in support of fiscal year 2000 funding for mental health research 
supported by the National Institutes of Health (NIH) and the National 
Institute of Mental Health (NIMH).
    With more than 275 support groups in nearly every state, National 
DMDA is the nation's largest patient-run, illness specific organization 
committed to advocating for research toward the elimination of 
depressive illnesses, educating patients, professionals and the public 
about the nature and management of depression and manic-depression as 
treatable medical diseases, fostering self-help, eliminating 
discrimination and stigma, and improving access to care. National DMDA 
was founded in 1986 and is headquartered in Chicago, Illinois. A 
distinguished scientific advisory board of more than 65 members reviews 
all materials published by National DMDA, and provides critical and 
timely advice on important research opportunities and treatment 
breakthroughs. This Board includes the leading researchers and 
clinicians in the field of depressive disorders.
                    the impact of depressive illness
    More than 18.4 million Americans suffer from unipolar depression 
every year. An additional 2.3 million people suffer from manic-
depression or bipolar disorder. Women are more than twice as likely as 
men to experience major depression. Depression is the leading cause of 
suicide in America. 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.
    According to a recent study by the World Health Organization (WHO), 
the World Bank, and the Harvard School of Public Health, unipolar major 
depression is the first-ranked leading cause of disability in the world 
today and bipolar disorder is the seventh-ranked cause of disability. 
The economic cost of depressive illnesses in the United States is 
estimated to be almost $44 billion per year in direct and indirect 
costs including absenteeism, mortality, and lost productivity. We 
cannot continue to ignore the seriousness of mental illness but must 
instead focus our research resources on better understanding depressive 
illnesses, improving treatments, and seeking a cure.
            progress in diagnosis, prevention, and treatment
    Research supported by the NIMH has led to many discoveries 
resulting in improved diagnostics, prevention, and treatments which has 
saved lives and billions of tax dollars. For example, more than $145 
billion has been saved since 1970 as a result of the development of 
lithium treatment for manic-depression--almost $6 billion per year. A 
study supported by the NIMH showed that intervention to prevent 
depression in the workplace resulted in $1,314 per person in increased 
Federal and state taxes generated over a two and a half year period, 
with a cost of only $286 per person. Finally, it has been shown that 
every $1 spent on treatment of depressive disorders yields between $3 
and $9 in net economic return on employment earnings.
    NIMH-supported research has led to new and more effective 
medications for both depression and manic-depression. We also have a 
better understanding of depressive illnesses and are learning more 
about their impact on cardiovascular disease and stroke. The 
comorbidity of depression and alcohol and tobacco use is also becoming 
more clear. Research indicates that treating addiction and not 
depression leads to failure and relapse and vice versa.
    Depressive and manic-depressive disorders are treatable medical 
illnesses, if diagnosis and treatment is received. However, one of the 
biggest obstacles to expanding access to services is the historical 
stigma surrounding mental health treatment, exemplified by arbitrary 
and unfair limits on access to mental health services by private health 
insurance plans. Increased public awareness and understanding of 
depressive disorders would contribute significantly to improved 
diagnoses and treatment rates for this potentially fatal illness. 
Tragically, individuals untreated or undertreated for major depression 
have a suicide rate in excess of 15 percent. For those with bipolar 
disorder, the suicide rate is in excess of 20 percent.
Genetics
    Current research indicates that there is a genetic predisposition 
to manic-depression. Understanding the genetic basis of depressive 
disorders will lead to vastly superior methods of diagnosis, treatment 
and prevention. We support a continued strong investment in the NIH to 
achieve the completion of the human genome sequencing project, which 
will be critical to uncovering the genetic factors involved in mental 
illness and clarify the phenotypes of major mental disorders. We are 
pleased that NIMH is soliciting applications to collect a database of 
families with mental illness for genetic analysis as the science and 
technology becomes available in the near future. A high priority should 
also be the epidemiology and clinical evaluation of individuals with 
manic-depression and their family members.
Clinical research
    National DMDA believes that the translation of research from the 
laboratory to the bench in a rapid and efficient manner is of paramount 
importance. This requires a re-newed commitment to clinical research 
that is strongly supported at the highest levels of the National 
Institutes of Health (NIH). Furthermore, it requires that third party 
payers be required to support important patient care costs associated 
with the evaluation of promising therapeutics in order to facilitate 
the completion of clinical evaluation at the earliest possible moment. 
National DMDA is pleased with the progression of NIMH-sponsored 
clinical trials studying Hypericum perforatum (St. John's wort) and 
trials initiated within the last year to study treatments for children 
with schizophrenia, manic-depressive illness, depression, obsessive-
compulsive disorder, and autism. We fully support NIMH plans to expand 
clinical trials of treatments for mental illnesses, with emphasis on 
clinical trials networks, developmental psychopharmacology, and an 
interventions infrastructure program.
Depression in children
    Of particular concern to National DMDA is the issue of depressive 
disorders in children. Many children and adolescents suffer from 
depression, which in its most severe forms may lead to acts of violence 
including self-inflicted violence (suicide). The identification of 
depression in children as well as understanding the causes of 
depression and how best to intervene in childhood offers the best hope 
for preventing many cases of adult mental illness, including 
depression. National DMDA supports the aggressive research agenda NIMH 
is pursuing in this area, including a study to examine the course and 
outcome of bipolar disorder with onset in childhood and early 
adolescence, and research examining underlying bioregulatory processes, 
neurobehavioral systems, adolescent pubertal development and their 
links to major depressive disorder. We are particularly encouraged by 
NIMH efforts to strengthen the field of children's mental health 
research by creating new incentives for experienced investigators to 
move into studies of mental illness in children.
Bipolar disorder (manic depression)
    The World Health Organization has identified that bipolar disorder 
is the seventh-ranked cause of disability in the world. Nearly 1 in 100 
Americans suffers from manic depression yet research in this area has 
been seriously underfunded in recent years. In fact, in 1998, NIMH 
spent only $39 million on bipolar research and they are expected to 
spend just $46 million in fiscal year 1999. Thus, the government must 
continue to increase its investment in this important area of mental 
health research.
                         research opportunities
    National DMDA urges NIMH to pursue genetic research aggressively in 
collaboration with other NIH Institutes, academia, the private sector 
and by continuing studies of individuals with manic-depression and 
their family members. Other factors to examine in relation to genetics 
include building and refining knowledge of risk factors for depressive 
diseases, developing better predictors of risk, designing and piloting 
new screening measures, advancing early-intervention strategies for 
these risk factors, and studying the role stress and the environment 
play.
    Neuroscience advances bring us to the brink of tremendous 
opportunities to understand underlying deficits in major mental 
disorders. We know more about neurobiology today than ever before and 
we must support, as a national priority, continued efforts to enable us 
to more fully exploit our recent advances. Flexibility of connections 
in the nervous system underlies many of the adaptive responses of the 
individual to the environment--including response to psychological and 
physical trauma and the more general processes underlying learning and 
memory--and such changes in the neural function are central to most 
mental disorders. The field is now poised for rapid strides into 
understanding these critical processes.
    Other important opportunities include research to better 
characterize subtypes of depression; to find treatments with fewer side 
effects and understand the psychopharmacology of current 
antidepressants; and studies to close the gap between what is known 
about treating depressive illnesses and what is practiced particularly 
in managed care settings. These are just a few of the research areas 
where great opportunities exist.
    The National DMDA looks forward to the release of the Surgeon 
General's Report on Mental Health later this year. It is our hope that 
it will generate greater awareness and understanding about the nature 
of depressive and manic depressive disorders as treatable medical 
illnesses and provide the catalyst for an aggressive mental health 
research agenda as we enter the 21st century.
                            funding request
    Of course, an aggressive research agenda requires sustained 
funding. While we recognize the Subcommittee's current budgetary 
constraints, National DMDA supports the effort initiated in fiscal year 
1999 to double the budget for the NIH and NIMH by fiscal year 2003. 
This will allow us to take full advantage of the many exciting mental 
health research opportunities that exist today. To continue the 
glidepath towards achieving this important goal, we strongly support 
the fiscal year 2000 funding recommendation of the Ad Hoc Group for 
Medical Research Funding of $18 billion for the National Institutes of 
Health (NIH). The National DMDA supports a corresponding increase for 
NIMH.
    Sustained, stable growth in funding for the NIH is needed to build 
upon past scientific achievements, address present medical needs, and 
anticipate future health challenges. Volatility and dramatic 
fluctuations in funding can be as harmful to the research enterprise as 
inadequate growth.
    We appreciate your past support and look forward to working with 
you in the future to ensure a sustained commitment to mental health 
research. Together we can provide the gateway to new discoveries that 
will improve access to care and eliminate discrimination and the stigma 
associated with depressive and manic depressive disorders.
                                 ______
                                 
            Prepared Statement of the Society of Toxicology
    The Society of Toxicology (SOT) is pleased to have this opportunity 
to present its views in support of fiscal year 2000 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 5,000 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.
                         research opportunities
    Members of the Society of Toxicology strongly believe that our 
investment in biomedical research must be increased and sustained over 
the long-term if we are going to take advantage of the many exciting 
research opportunities which exist in the area of environmental health 
sciences. We are appreciative of the outstanding research efforts of 
NIEHS and are supportive of the research priorities identified by NIEHS 
Director Dr. Kenneth Olden.
    Research supported by NIEHS is helping us to better 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 harmful health effects of lead especially in children, 
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 Environmental Genome Project will further explore these 
questions and contribute to the development of improved prevention 
strategies and health. Finally, NIEHS under the auspices of the 
National Toxicology Program is making progress in developing new and 
innovative transgenic animal models to more efficiently test the 
toxicity of chemicals. This increased efficiency will allow for more 
chemicals to be tested more quickly.
    SOT also supports the research NIEHS is conducting on the potential 
adverse effects of chemicals that are commonly referred to as endocrine 
disruptors. These are compounds in our environment which may have an 
affect on endocrine systems and on physiological processes which are 
dependent on normal functioning of the systems (e.g. reproduction and 
development). The Society is especially pleased that NIEHS is moving 
forward with a number of studies that will examine the linkage between 
exposure to alleged endocrine disregulating chemicals and diseases and 
disorders affecting women's reproductive health.
    We also strongly support NIEHS involvement in the multi-agency 
effort to identify the research needs on the safety and efficacy of 
herbal medicines. According to the President's Commission on Dietary 
Supplements, some 1,500 to 1,800 botanicals are sold in the U.S. as 
dietary supplements or ethnic traditional medicines. As the use of 
these alternative therapies becomes more widespread, there is the need 
for scientifically valid information about both the benefits and risks 
of their use. The SOT is pleased that NIEHS is planning to conduct 
rodent studies of some herbal products for which there is no long-term 
data.
                    superfund basic research program
    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. The Superfund Basic Research Program is the only 
scientific research program focused on health and cleanup issues for 
Superfund hazardous waste sites. It represents an important 
collaboration between EPA and NIEHS to ensure that environmental 
cleanup decisions are based on sound environmental health science.
    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 17 university-
based research programs located in 69 institutions across the country. 
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 and technology base needed for making accurate 
assessments of human health risks and developing cost-effective cleanup 
technologies.
    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. 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.
    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 and administered by 
NIEHS.
                            funding request
    The Society of Toxicology strongly supports the effort initiated 
last year to double funding for the NIH by fiscal year 2003. To 
accomplish this, we urge the Committee to support the recommendation of 
the Ad Hoc Group for Biomedical Research Funding calling for a 15 
percent increase for NIH in fiscal year 2000. The Society of Toxicology 
urges the Committee to provide a corresponding increase for NIEHS, 
given its important role in increasing our understanding of how the 
environment potentially affects our health. Whether it is exploring 
asthma incidence in children, testing the toxicity of chemicals, or 
better understanding the genetics underlying environmental risk 
factors, NIEHS supported research is leading the way in bridging the 
gap between public policy and environmental health science.
    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 the Research Society on Alcoholism
    The Research Society on Alcoholism (RSA) is grateful for the 
opportunity to provide written testimony to the Senate Appropriations 
Subcommittee on Labor, Health and Human Services. RSA is a professional 
research society whose 1,200 members conduct basic, clinical, and 
psychosocial research on alcoholism and alcohol abuse. We are indebted 
to this Subcommittee for its courageous support of medical research. 
The scientific community and the patients we serve are grateful that 
you have championed the cause of research on their illnesses.
    One in ten Americans will suffer from alcoholism or alcohol abuse. 
The cost to the nation is nearly $167 billion annually, and the 
government bears close to half of these costs. Alcohol is a factor in 
50 percent of all homicides, 40 percent of all motor vehicle 
fatalities, 30 percent of all suicides, and 30 percent of all 
accidental deaths. These statistics have a human face: family and 
friends killed by drunk drivers; frightened, abused children living 
with abusive alcoholic parents; good people who lose their jobs, their 
families, their health, and their dignity because they can't stop 
drinking.
    Prohibition did not solve the problem of alcoholism, and current 
therapy is inadequate. Only research holds the promise of change, but 
alcohol research is woefully under-funded. The National Institute on 
Alcohol Abuse and Alcoholism (NIAAA) funds over 90 percent of all 
alcohol research conducted in the United States. For 1999, the budget 
of the NIAAA is $259.7 million. We are committing to alcohol research 
only $1.56 for every 1,000 dollars lost from alcohol abuse and 
alcoholism and only $18 dollars for every affected individual. In 1997, 
NIAAA could fund just 27.8 percent of all grant applications; the 
comparable figure for NIH is 31.4 percent. Three times each year, 
members of the alcohol study section agonize over outstanding alcohol 
research proposals that will never be funded.
    This inability to fund proposals comes at a time of unprecedented 
opportunities in alcohol research. Scientists funded by the NIAAA have 
identified discrete regions of the human genome that contribute to the 
inheritance of alcoholism. Genetic research will accelerate the 
rational design of drugs to treat alcoholism and improve our 
understanding of the interaction between heredity and environment in 
the development of alcoholism.
    The development of effective therapies for alcoholism also requires 
an improved understanding of how alcohol affects the brain. This past 
year has produced exciting discoveries. Molecular biologists have 
demonstrated that alcohol targets specific regions of certain brain 
proteins to produce its effects. Learning the structure of alcohol's 
targets in the brain will allow scientists and the pharmaceutical 
industry to rapidly screen drugs that can block the effects of alcohol. 
Studies in fruit flies have demonstrated that a specific gene mutation 
can alter sensitivity to alcohol, an important predictor of the 
development of alcoholism in humans. Because genetic studies in fruit 
flies can be carried out rapidly, the development of this model will 
allow accelerate our understanding of how alcohol affects cell 
signaling in the brain.
    Scientists have also been developing new ways of delivering 
psychotherapy to alcoholics, of engaging alcoholics in treatment, and 
of caring for the multiple problems of the alcoholics and their 
families. This ongoing process of developing and evaluating new 
therapeutic modalities has improved the treatment of alcoholic 
patients. Continued progress has been made in the development of 
treatments for alcoholism. Naltrexone, a drug that blocks the brain's 
natural opiates, reduces craving for alcohol and helps maintain 
abstinence. NIAAA is funding project COMBINE, a study of the potential 
benefits of the combined use of naltrexone and acamprosate, another 
promising drug, along with behavioral therapies.
    One of the most tragic consequences of alcoholism is Fetal Alcohol 
Syndrome (FAS), 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, many individuals 
cannot stop drinking. We need to develop methods validated by research 
to prevent alcohol use during pregnancy. NIAAA is currently funding 
research to improve the identification and treatment of women who are 
at risk of harming their children by drinking during pregnancy.
    Researchers are also involved in finding new methods of educating 
our children about the dangers of drinking. Recent research has shown 
that children who begin alcohol use at an early age are at increased 
risk of developing alcohol problems later. Projects are addressing 
methods for educating children, parents, and communities about the 
dangers of early alcohol use.
    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 major advances in alcohol research.
                             recommendation
    NIAAA: The Research Society on Alcoholism requests that funding for 
NIAAA in fiscal year 2000 be increased by $78 million (30 percent) to 
$337.7 million. However, given the magnitude of the problem and the 
abundance of research opportunities, RSA strongly urges the 
Subcommittee to bring NIAAA's budget up to the level of comparable 
institutes. This request balances the impact of the disease, the 
relative underfunding of NIAAA, and the abundance of research 
opportunities.
    NIH: For fiscal year 2000, we strongly support the funding 
recommendation of the Ad Hoc Group for Medical Research Funding of $18 
billion for the National Institutes of Health (NIH). Sustained, stable 
growth in funding for the NIH is needed to build upon past scientific 
achievements, address present medical needs, and anticipate future 
health challenges. Volatility and dramatic fluctuations in funding can 
be as harmful to the research enterprise as inadequate growth.
                                 ______
                                 
      Prepared Statement of the Texas Neurofibromatosis Foundation
    The Texas NF Foundation is pleased to have the opportunity to 
submit testimony on the need for a continued Federal commitment to 
research on Neurofibromatosis (NF), a terrible genetic disorder closely 
linked to cancer, brain tumors, learning disabilities and heart disease 
affecting over 100 million Americans, as well as in support of fiscal 
year 2000 appropriations for the National Institutes of Health (NIH).
    The Texas Neurofibromatosis Foundation was established in 1981 and 
is committed to meeting the needs of people challenged with NF by 
providing care, comfort, support, information, education, funding, and 
other resources for the treatment, prevention, and eventual cure of 
this disease. With offices in Dallas and Houston, the Foundation 
coordinates support groups, organizes fundraising events and 
educational symposiums, and assists with NF clinics across the state 
that serve the more than 5,000 individuals with NF in Texas. Dedicated 
volunteers form the heart of the organization, giving their time and 
talents to increase public awareness and raise the money necessary to 
support patient programs and research projects. Advocates from around 
the country look to the Texas NF Foundation as a model when 
establishing new a NF organization in a state. Texas is also home to 
some of the most exciting NF research described below.
    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/or death. It is the most common 
neurological disorder caused by a single gene. While not all NF 
patients, like myself, suffer from the most severe symptoms, all of us 
live our lives with the uncertainty of not knowing whether we too will 
be severely affected because NF is a highly variable and progressive 
disease. Approximately 100,000 Americans have NF, and it appears in 
approximately one in every 3,500 births. It strikes worldwide, without 
regard to gender, race or ethnicity. There are two types of NF; type 1, 
which is the more common of the two and NF2 which primarily involves 
acoustic neuromas causing deafness and balance problems as well as 
other types of tumors such as schwannomas and meningiomas.
    With the continued support of this Subcommittee and a relatively 
small Federal investment, NF has become one of the great success 
stories in the current revolution in molecular genetics. Because of the 
enormous advances that have been made, one leading NF researcher has 
stated that more is known about NF genetically than any other disease. 
Accordingly, many NF researchers believe that NF should serve as a 
model to study all diseases. The future promise of NF research is based 
upon these successes. Let me highlight for you some of the advances in 
NF research that have occurred since 1990:
  --The discovery of the NF1 and NF2 genes and gene products;
  --Determination of the close connection between NF and cancer, brain 
        tumors, learning disabilities, heart disease, and other 
        neurological disorders;
  --Determination and understanding of the functions of the NF1 and NF2 
        genes and gene products including the discovery of new pathways 
        impacted by the NF genes and gene products;
  --Development of advanced animal models;
  --Development of drug and gene therapies;
  --Commencement of clinical trials at NCI;
  --Establishment of an international consortium of NF researchers and 
        patients;
  --Rescuing learning deficits in animal models with NF1;
  --Substantial increase in the number of NF researchers.
    The enormous promise of NF research--and its potential to benefit 
tens of millions of Americans in this generation alone--has gained 
increased recognition from Congress and the NIH. This is evidenced by 
the fact that five Institutes at NIH are currently supporting NF 
research (NCI, NINDS, NIDCD, NICHD, and NHLBI) and NIH's total NF 
research portfolio has increased from $11 million in 1995 to 
approximately $18 million in 1998. The National Institute on Disability 
Research and Rehabilitation (NIDRR) within the Department of Education 
has also expressed an interest in pursuing NF research in the learning 
disability area since 35-60 percent of children with NF suffer from 
learning disabilities. For fiscal year 2000, the Subcommittee's 
continued support will be critical to build upon the basic and clinical 
research described below which is essential to moving us closer to a 
treatment and cure for this disease.
    In the nine years since the discovery of the NF gene, researchers 
have established the connection between NF and the following diseases 
and disorders:
    Cancer.--Dr. Samuel Broder, former Director of the National Cancer 
Institute, stated that NF was at the ``cutting edge'' of cancer 
research. Studies have investigated the connection between the ras 
oncogene, which is critical to control growth and development in 
healthy cells (and when mutated contributes to the formation of 
tumors), and the NF1 gene which is a tumor suppressor. The studies 
showed that ras activity can be inhibited by the NF1 protein 
neurofibromin. Since elevated ras activity is involved in 30 percent of 
all cancers, the inhibition of ras by neurofibromin may result in a 
cure, not only for NF, but also for many of the most common forms of 
cancer.
    Learning disabilities.--In addition to NF's connection to cancer, 
NF also provides a unique opportunity to begin to uncover a molecular 
basis for cognitive impairment, and it holds the prospect of possessing 
a radiologic marker for brain dysfunction. Specific learning 
disabilities are the most common neurological complication in children 
with NF1. The reported frequency of learning disabilities in children 
with NF ranges between 30 percent -65 percent. Uncovering the molecular 
and cellular causes for the learning deficits caused by NF should also 
reveal important clues on what causes and how to cure tumors in NF1 
patients, because the same molecular mechanisms underlie both tumor 
formation and learning disabilities. For example, recent research on 
mice with the same mutation that causes NF1 in humans (NF1 mice) has 
shown that treating the mice with a drug (farnesyl transferase 
inhibitor) that decreases ras function (the same ras that causes cancer 
and tumors) CURES their learning disabilities. Studies on fruit flies 
have also demonstrated that the protein made by the NF1 gene is part of 
the c-AMP pathway, the pathway which is known to control learning and 
memory.
    Deafness.--Leading NF researchers believe that the science has 
progressed to the point when a gene therapy for NF2 can be developed 
and tested. Unlike other genetic forms of deafness, in which mutation 
leads to a development or structural abnormality in the ear for which 
it would be difficult to envisage a treatment in the adult, NF2-
associated deafness is potentially preventable or curable if tumor 
growth is halted before damage has been done to the adjacent nerve. NF2 
accounts for approximately 5 percent of genetic forms of deafness. It 
is also related to other types of tumors including schwannomas and 
meningiomas, as well as being a major cause of balance problems.
    Heart disease.--Recently published research has also demonstrated 
the relationship between NF and heart disease. Researchers have 
demonstrated that mice completely lacking in NF1 have congenital heart 
disease that involves the endocardial cushions which form in the valves 
of the heart. This is because the same ras which causes cancer and 
learning disabilities also causes heart valves to close and 
neurofibromin suppresses ras, thus opening up the heart valve. Errors 
in valve formation account for a large percentage of congenital heart 
disease in humans, and congenital heart disease is the most common type 
of congenital defect. Researchers believe that further understanding 
how an NF1 deficiency leads to heart disease may help to unravel 
molecular pathways affected in genetic and environmental causes of 
heart disease. This finding opens up a new area for future research in 
congenital heart disease. In addition, the role of NF1 in neural tube 
closure suggests that NF1 research may bear on the understanding of 
causes of Spina Bifida, a common birth defect.
    NF research is on the precipice of many major discoveries that will 
have broad and significant implications for Americans suffering from 
many disorders and diseases. For example, NCI is currently recruiting 
new patients for a clinical trial involving the use of farnesyl 
transferase inhibitors in pediatric patients with refractory solid 
tumors. NCI is recruiting NF1 patients with progressive inoperable 
neurofibromas, among others. Other areas of research opportunity 
include:
  --Further clinical trials;
  --Expansion of drug and genetic therapies for NF and related 
        disorders;
  --Further development of NF animal models;Maintenance and expansion 
        of consortium of NF clinical researchers and patients;
  --Further determination of the connection between NF and cancer, 
        tumors, heart disease, learning disabilities, deafness, bone 
        and other disorders;
  --Further determine function of the NF genes and gene products;
  --Expansion of pool of NF researchers.
    This Subcommittee recognizes that our goal should be to translate 
the promise of scientific discovery into an improved quality of life 
for all Americans. To accomplish this goal, we must, as a nation, 
continue to invest in medical research at the NIH. Sustained, stable 
growth in funding for the NIH is needed to build upon past scientific 
achievements, address present medical needs, and anticipate future 
health challenges. Volatility and dramatic fluctuations in funding can 
be as harmful to the research enterprise as inadequate growth. Towards 
this end, I encourage the Subcommittee to support the recommendation of 
the Ad Hoc Group for Medical Research Funding, a coalition of over 200 
patient and voluntary health groups, medical and scientific societies, 
academic and research organizations, and industry, which calls for a 
fiscal year 2000 appropriation of $18 billion for the National 
Institutes of Health (NIH). In addition to providing increased funding 
for the NIH as a whole, this Subcommittee has recognized the promise of 
NF research and has included language in your fiscal year 1999 Report 
encouraging both NCI and NINDS to increase their NF research portfolios 
through the use of: Requests for Applications, Program Announcements, 
the National Cooperative Drug Discovery Group Program, and Small 
Business Innovation Research Grants, as appropriate. I urge the 
Subcommittee to continue to encourage these Institutes, as well as 
NICHD, NIDCD, NHLBI, and NIDRR at the Department of Education to 
continue this trend.
    In addition to continuing to provide increased funding to the NIH, 
I ask Members of this Subcommittee to consider that recent advances in 
science have shown that stem cell research may lead to meaningful 
treatment and cures for many debilitating and catastrophic diseases. 
Further, stem cell research has the potential to be applied in 
developing new drugs and testing them in the laboratory, so that 
cellular and possible adverse reactions can be foreseen and addressed 
prior to evaluating new drugs. We recognize that stem cell research 
brings with it important ethical and scientific oversight issues which 
must be considered. We support the recent ruling by the Department of 
Health and Human Services (DHHS) with regard to the ability of the NIH 
to proceed with funding stem cell research. However, we also believe 
that it is necessary for the NIH to establish a regulatory framework 
under which this scientific exploration should be undertaken to ensure 
that the social and ethical issues are carefully considered.
    In closing, I would like to end with a statement that appeared in 
an edition of Cold Spring Harbor Laboratory's newsletter which focused 
on major breakthroughs in NF research: ``the hope is that the day may 
come when doctors can flip critical switches to repair the broken 
circuits in each of these disorders and diseases. Such life-changing 
therapies will be the reward for years of enthusiastic basic 
research.'' I believe that with your continued support of this 
Subcommittee and Congress, that day will soon be here.
                                 ______
                                 
            Prepared Statement of the NYU School of Medicine
    The NYU School of Medicine is pleased to have this opportunity to 
submit testimony in support of fiscal year 2000 funding for the 
National Institutes of Health (NIH) as well as to discuss a few of the 
exciting initiatives underway at the School of Medicine.
    In my opinion, there has never been a more exciting time to enter 
medicine. Enormous breakthroughs have allowed great advances in our 
understanding of disease and our ability to devise new therapies. And 
we know with certainty that this explosion of knowledge will continue. 
With continued federal support for basic, cutting edge research 
supported through the NIH, we will continue to move closer to our goal 
of translating the promise of scientific discovery into an improved 
quality of life for all Americans.
    The NYU School of Medicine takes pride in a history that goes back 
to 1837 and includes initiation of and participation in many of the 
major events in American medicine through two centuries. The School 
annually graduates 150 physicians, and it employs 3,000 individuals 
including more than 800 faculty members. For 150 years the School has 
provided high quality patient medical services and medical supervision 
to Bellevue Hospital Center, New York City's premiere municipal 
hospital. The mission of the School is threefold: the training of 
physicians, the search for new knowledge, and the care of the sick. 
These three missions must be carried out simultaneously for they are 
wholly dependent upon each other, not only for inspiration, but for 
their very means of success. At the School of Medicine, we recognize 
that in order to excel in these three missions, we must be responsive 
to the major events and trends that are shaping medicine in our time. 
These include: the revolution in molecular biology and medical 
technology; the societal imperatives imposed by rising health care 
expectations and finite limits on resources; the explosive growth in 
biomedical information; and the increasing role of the patient in the 
decision-making process. Following the recent alliance of New York 
University's hospitals with the Mount Sinai Medical Center, the School 
is now poised to enter a period of unprecedented growth in the area of 
medical and scientific research.
    I would like to highlight three exciting initiatives underway and 
under development at the School of Medicine. These initiatives provide 
a snapshot of our commitment to providing a unique atmosphere of public 
service, the highest quality medical care for the underserved, research 
and education. The School of Medicine is developing a comprehensive 
Program in Women's Cancer (PWC). This program will be an integral 
component of the Kaplan Comprehensive Cancer Center (KCCC). The PWC 
will encompass the full spectrum of clinical services, advanced 
training, fundamental and translational research into those cancers 
that exclusively or primarily affect the female reproductive tract, 
with a focus on minority women. The components of this program include: 
etiology and biology; risk identification and prevention; screening; 
diagnosis and treatment; palliation and rehabilitation; and psycho-
social support. The School is seeking the Subcommittee's support to 
expand its PWC.
    A second key component of the KCCC is its research in the area of 
the environmental causes of cancer. The KCCC is one of the few 
comprehensive cancer centers with a strong component in this area. 
Research focuses on understanding the roles of environmental risk 
factors and their joint action with genetic or biochemical factors in 
disease etiology, specifically cancer. The School is seeking the 
Subcommittee's support to expand research in this area for: studies on 
the development and validation of new biomarkers of exposure, effect 
and susceptibility, which will aid in assessing the health risks 
associated with exposure to hazardous substances; studies to identify, 
evaluate, or validate factors in an individual's environment or 
physiological makeup that may lead to an increased likelihood of cancer 
relative to the general population; studies on the etiology of cancer.
    The School is also working with the Stephen Hassenfeld Children's 
Center to launch a model integrated and comprehensive treatment program 
for children with cancer and their families generally, but with an 
additional emphasis on the singular needs of children with brain tumors 
that focuses on improving their quality of life for long term survival. 
Brain tumors represent the second major cause of cancer in children in 
North America and Europe and, because of the poor results of treatment 
generally, are the leading cause of cancer-related death in children 
and adolescents. Current estimate suggest that there will be 200,000 
pediatric cancer survivors by the turn of the century, yet currently 
there are few comprehensive care programs that support children and 
families over the long term, and none that serve a large economically 
disadvantaged population. Over 40 percent of the Center's patients last 
year were under-represented minorities, and more than half were 
uninsured or insured through Medicaid.
    The program at the Hassenfeld Center will connect access to 
specialty care to social services, including counseling and access to a 
psychogeneticist for children with brain tumors. School-related 
problems are four times more frequent in pediatric cancer patients than 
in healthy children, and often include specific learning disabilities 
with underlying deficits in essential cognitive processing systems that 
limit the survivor's ultimate educational attainment and vocational 
level. This program will address the goals of the minority health 
initiative within the Department of Health and Human Services which 
aims to reduce the burden of disease in racial and ethnic minority 
groups, and the School is seeking the Subcommittee's support for this 
demonstration program which will serve as a national model for 
providing comprehensive care to children with brain tumors.
    This Subcommittee has been a leader in ensuring that we continue to 
adequately invest in medical research, and on behalf of the School I 
thank you for your continued support for the National Institutes of 
Health. For fiscal year 2000, the NYU School of Medicine supports the 
funding recommendation of the Ad Hoc Group for Medical Research 
Funding, a coalition of nearly 200 patient and voluntary health groups, 
medical and scientific societies, academic and research organizations, 
and industry, which call for an appropriation of $18 billion for the 
NIH. Sustained, stable growth of funding for the NIH is needed to build 
upon past scientific advances, address present medical needs, and 
anticipate future health challenges. Volatility and dramatic 
fluctuations in funding can be as harmful to the research enterprise as 
inadequate growth.
    Recent advances in science have established that the potential to 
push the frontier of stem cell research may lead to meaningful 
treatment and cures for many debilitating diseases. The School of 
Medicine is involved in cutting edge research supported by the NIH 
involving the use of stem cells and believes that the potential 
application of knowledge gained from this research has the potential to 
reduce human suffering. Further, stem cell research has the potential 
to be applied in developing new drugs and testing these drugs in the 
laboratory, so that cellular and possible adverse reactions can be 
foreseen and addressed prior to evaluating new drugs. We recognize, 
however, that important ethical and scientific oversight issues 
accompany this research which must also be considered. The School of 
Medicine supports the recent ruling by the Department of Health and 
Human Services (DHHS) with states that the NIH may continue to fund 
stem cell research. However, we believe that it is vitally important 
for the NIH to establish a regulatory framework under which this 
scientific exploration can be undertaken to ensure that the social and 
ethical issues are carefully considered. The scientific community looks 
toward the National Bioethics Commission (NBAC) to provide the ethical 
framework for proceeding with this important field of science. Further, 
it is important that stem cell research be conducted under public 
scrutiny rather than occur elsewhere in an unregulated, secretive 
environment.
                                 ______
                                 
  Prepared Statement of Gilbert S. Omenn, M.D., Ph.D., Executive Vice 
    President for Medical Affairs, University of Michigan, and CEO, 
                  University of Michigan Health System
    I am Dr. Gil Omenn, Executive Vice President for Medical Affairs of 
the University of Michigan and CEO of the University of Michigan Health 
System. I am an internist and a geneticist, as well as a former 
Associate Director of OSTP and of OMB.
    I am submitting my comments on behalf of a coalition of over 20 
academic health centers across the nation to highlight issues of 
concern to all academic health centers in the United States. The 
recommendations which I will present have been endorsed in various 
parts by the Association of American Medical Colleges (AAMC) and the 
Federation of American Societies for Experimental Biology (FASEB).
    First, I want to thank Chairman Specter and the Members of the 
Senate Labor/HHS/Education Subcommittee for your continuing leadership 
in providing significant increases in appropriations for the National 
Institutes of Health over the past several years. Your support has 
allowed the agency to greatly expand the nation's medical research 
enterprise to investigate the causes, prevention, and treatment of the 
many healthy problems which affect people throughout the country and 
around the world. The $2 billion increase which you provided for fiscal 
year 1999 is a splendid launch toward the bipartisan goal of doubling 
the NIH budget by 2003.
    We must remember that our country now spends more than $1 trillion 
on medical care, as we think about the size of the NIH appropriation. I 
estimate that 20-30 percent of that annual figure, a very large sum, is 
spent chasing the symptoms of common diseases--most cancers, neurologic 
diseases, psychiatric disorders, gastrointestinal disturbances, 
arthritis of various kinds, and others--for which we simply do not yet 
know enough about the underlying causes and the disease pathways to 
intervene to prevent, reverse, or modify the complications for our 
patients. No way do we or the American people want to be stuck with 
such limited basis for medical care and public health.
    I am contacting you to seek your help in further strengthening the 
extraordinary partnership that was established with great foresight 
years ago between academic institutions and the federal government. 
This partnership has spawned remarkable scientific developments over 
decades. These advances position us--academia, industry, and the 
government--to work together to exploit the golden era of biology. 
Academic institutions across the nation are proud to be major players 
in this partnership.
    We in the academic health community urge you to improve this 
academic/federal partnership by recognizing the following three 
problems which limit the extramural biomedical and behavioral research 
community from operating at optimal capacity and efficiency:
    (1) the need for state-of-the-art facilities to carry out the 
increasing volume of federally-supported biomedical and behavioral 
research;
    (2) the need for competitive salaries for extramural researchers;
    (3) the need for a peer-reviewed, flexible grant program for shared 
resources to meet evolving and transitional research needs at the 
institutional level.
  increase funding for facilities--construction, renovation, equipment
    Exciting developments in genomics, chemical biology, neurosciences, 
cancer, and many other fields require new kinds of equipment and 
facilities. Even the best minds cannot compensate for outdated 
equipment and facilities. It is vitally important that we have the 
facilities and equipment to fully exploit research opportunities and 
utilize the increased project grant funding.
    The National Science Foundation (NSF) completed a study in 1998 on 
the status of scientific research facilities at U.S. colleges and 
universities. This analysis generated an estimate of $3.6 billion in 
deferred biomedical research construction and repair or renovation 
projects. In a March 1998 report, the Association of American Medical 
College (AAMC) stated that ``The government should reestablish and fund 
an NIH construction authority, consistent with the general 
recommendations of the Wyngaarden Committee report of 1988, which 
projected at that time the need for a 10-year spending plan of $5 
billion for new facilities and renovation.'' In June 1998, the 
Federation of American Societies of Experimental Biology (FASEB) 
reported that ``Laboratories must be built and equipped for the science 
of the 21st Century. Infrastructure investments should include 
renovation of existing space as well as new construction, where 
appropriate.''
    My colleagues and I urge you to provide the NIH with $250 million 
for extramural facilities construction in the fiscal year 2000 Labor/
HHS/Education funding bill. The funds would be awarded on a competitive 
basis, requiring institutional matching to leverage the NIH resources.
             raise the salary cap on extramural scientists
    NIH and the academic community share a major concern about 
recruiting and retaining excellent clinician-investigators in 
biomedical and behavioral research. These physicians typically have 
considerable accumulated debt from their medical and post-graduate 
training, and they have an opportunity cost in choosing research 
careers. The med schools increasingly expect them to earn their way 
through clinical service and, of course, by earning support for their 
research time by competing for federal grants. As they move up the 
ranks and develop successful careers, they or their academic 
departments are penalized by a salary rate cap imposed in 1991. 
Unfortunately and perhaps unintentionally, Congress omitted a salary 
adjustment to account for inflation. Thus, the maximum salary rate (on 
a 100 percent basis, prorated for the proportion of time spent in 
funded research) was $125,000 from 1991 through 1998. In the fiscal 
year 1999 budget, Congress did adopt the principle of increasing the 
cap by nudging it upward to $125,900.
    For its intramural program, the NIH has created new mechanisms to 
keep talented intramural scientists on the NIH campus: the Senior 
Biomedical Research Service (SBRS). Under this system, NIH can pay 
senior investigators salaries up to $151,000 a year. This amount is 
roughly equal to what the salary cap on academic researchers would be 
if it had been indexed for inflationary increases over the past decade.
    In order to attract and retain the most talented individuals to 
biomedical and behavioral research, especially clinician-investigators, 
and in order to assure equity between intramural and extramural 
scientists, we seek your support in raising the current salary maximum 
paid to extramural academic researchers to match the maximum salary 
level which the NIH can pay its own senior scientists under the Senior 
Biomedical Research Service. The adjustment could be phased in over two 
years to smooth the funding transition.
  a flexible institutional research fund to enhance the efficiency of 
                                research
    A third concern to our nation's academic medical institutions is 
inefficiency in the federal-academic partnership. As you know, during 
the past decade, financial pressures on the clinical enterprise of 
academic medical centers have intensified, particularly so since the 
implementation of the Balanced Budget Act of 1997 during the past year. 
It is increasingly difficult to generate institutional margins to 
underwrite research needs that are not covered well in the project 
grant mechanism.
    We want to enhance the impact of NIH funding by being flexible 
enough to change with the science, accommodate changing national 
priorities, and make the most of the NIH and institutional investments 
in individuals throughout their careers. Glitches in funding cycles, 
changes in NIH policies and priorities, needs for research resources, 
and opportunities to mobilize research in new directions could be 
addressed better with a modest fund in the hands of the institutional 
leaders, based on competitive funding. Collaborative, interdisciplinary 
research initiatives can be stimulated through resources at a level 
above the individual investigators.
    Thus, we propose that you provide funding for NIH to establish a 
``Flexible Institutional Support for Health Research'' or ``FISHR'' 
program. Program resources would provide institutional support for the 
following priorities: to fund interdisciplinary, shared research 
resources; to assist postdoctoral fellows and beginning investigators 
to establish independent research projects; and to rapidly infuse 
short-term resources into investigations which offer tremendous promise 
for research progress.
    We recommend that the NIH establish such a peer-reviewed, three-
year grant program through the National Center for Research Resources. 
Grants could be in the range of $25,000 to $300,000 per year for Deans 
of medical, public health, nursing, dental, and pharmacy schools which 
qualify through having NIH project awards.
    Applications would provide general plans for needs anticipated to 
evolve. Awards would permit flexibility within the institution to 
determine spending priorities, within the categories approved (as 
proposed above). To assure accountability, we suggest two mechanisms: a 
local internal review committee, comprised of NIH-supported 
investigators at the institution, to review specific proposed 
allocations, on a prospective basis; then a retrospective review by NIH 
research program staff prior to approving eligibility to submit a 
competitive renewal application at the end of the grant award period.
    We urge you to include in the fiscal year 2000 appropriation for 
NIH $60 million to initiate this Flexible Institutional Support for 
Health Research (FISHR) Program. Such annual funding would favorably 
modify the impact of the recent stresses experienced by research and 
academic institutions which threaten the efficiency of our national 
research enterprise.
                           concluding remarks
    Mr. Chairman, the extramural research community applauds your 
efforts to increase funding for biomedical and behavioral research 
through to NIH. Based on polls conducted by Research!America, including 
polls in my state of Michigan, we know that the American public 
strongly supports these investments and has high expectations for 
payoff in new knowledge and medical and public health innovations.
    We are confident that the Congress and the NIH can enhance the 
impact of the project-based investments by taking the three additional 
steps we recommend: increase to $250 million in fiscal year 2000 the 
funding to upgrade extramural laboratory space and instrumentation; 
increase the maximal salary rate on NIH grants to match the maximum for 
intramural scientists; and initiate a Program for Flexible 
Institutional Support for Health Research (FISHR). Each of these steps 
will increase the productivity and efficiency of the academic/
government partnership in biomedical and behavioral research and 
research training.
    On behalf of academic health centers across the nation, I thank you 
for your attention to these needs and recommendations. Best wishes to 
each of you.
                                 ______
                                 
               Prepared Statement of Rotary International
    Chairman Specter, members of the Subcommittee, thank you for this 
opportunity to present written testimony on behalf of Rotary 
International in support of the polio eradication activities of the U. 
S. Centers for Disease Control and Prevention. Rotary International is 
a global association of more than 29,000 Rotary clubs, with a 
membership of over 1.2 million business and professional leaders in 160 
countries. In the United States today there are some 7,500 Rotary clubs 
with 400,000 members. All of our clubs work to promote humanitarian 
service, high ethical standards in all vocations, and international 
understanding.
    In the United States, Rotary has formed the USA Coalition for the 
Eradication of Polio, a group of committed child health advocates which 
includes Rotary, the March of Dimes Birth Defects Foundation, the 
American Academy of Pediatrics, the Task Force for Child Survival and 
Development, and the U.S. Committee for UNICEF. These organizations 
join us in expressing our gratitude to you for your staunch support of 
the international program to eradicate polio. Over the past several 
years, you have steadily increased your appropriation for the polio 
eradication activities of the Centers for Disease Control, and for 
fiscal year 1999 you appropriated a total of $67 million for the CDC's 
overseas polio eradication efforts. This investment has made the United 
States the leader among donor nations in the drive to eradicate this 
crippling disease. The target year is 2000 for eradication, with 
certification by 2005.
    Fewer than two years remain to defeat this disease in the nations 
where the polio virus still causes death and disability. With your 
continued support, soon no child will ever be struck down by polio 
again.
                    fiscal year 2000 budget request
    For fiscal year 2000, we respectfully request that you provide 
$83.4 million for the targeted polio eradication efforts of the Centers 
for Disease Control and Prevention, thereby meeting the President's 
budget request. This increase of nearly $17 million over the fiscal 
year 1999 funding level is needed to meet the enormous costs of 
eradicating polio in its final stronghold--sub-Saharan Africa. The 
underdeveloped and conflict-torn countries of Africa represent the 
greatest challenges to the success of the global Polio Eradication 
Initiative. This additional appropriation will allow the CDC to help 
African nations accelerate polio eradication activities, improve 
surveillance for polio and other diseases, and support peace-building 
ceasefires for NIDs. Without additional commitments, we may not be able 
to eradicate polio in Africa by the Target 2000 date, prolonging the 
need to continue expensive NIDs and routine immunization world-wide. 
The time for the final assault against polio is now.
    Humankind is on the threshold of victory against polio, and we must 
not miss this window of opportunity. Poliomyelitis will be the second 
major disease in history to be eradicated. The world celebrated the 
eradication of smallpox in 1979, and no child anywhere in the world 
will ever suffer from smallpox again. It is estimated that today as 
many as 20 million people around the world are living with paralysis 
from polio. The eradication of polio, achieved through your leadership, 
will not only save lives and suffering, but will also save our 
country's financial resources.
  eradicating polio will save the united states at least $230 million 
                                annually
    Last year the Chairman of the House Committee on International 
Relations commissioned the General Accounting Office to investigate the 
soundness of WHO cost estimates for the eradication or elimination of 
seven infectious diseases. The United States was a major force behind 
the successful eradication of the smallpox virus, and the GAO concluded 
that the eradication of smallpox has saved the United States some $17 
billion to date. Even greater benefits will result from the eradication 
of polio.
    Although polio-free since 1979, the United States currently spends 
at least $230 million annually to protect its newborns against the 
threat of importation of the polio virus, in addition to its investment 
in international polio eradication. 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 and immunization against it can be discontinued, tremendous 
resources will be unfettered to focus on other health priorities.
           progress in the global program to eradicate polio
    Thanks to your appropriations, the international effort to 
eradicate polio has made tremendous progress during the past two years.
  --The global eradication strategy is working. In 1985, when Rotary 
        began its PolioPlus Program, 100 nations around the world 
        suffered under the burden of polio. The Western Hemisphere has 
        now been polio-free for nearly 8 years, and today polio is 
        confined only to Sub-Saharan Africa, parts of the Middle East, 
        and South Asia. Five of the six most populous countries in the 
        world are now polio-free.
  --Some seventy-five countries conducted NIDs in 1998, immunizing over 
        450 million children against polio--nearly 75 percent of the 
        world's children under the age of five.
  --For 1998, the World Health Organization now expects that some 6,000 
        polio cases will be reported. While this is an increase over 
        the 1997 number, in fact it is a positive indication of great 
        improvements in the ability to detect polio cases.
  --During its third year of NIDs, India was able to immunize over 130 
        million children on one day--the largest public health event in 
        history. Pakistan, Bangladesh, and other neighboring countries 
        coordinated their NIDs with India's to achieve the maximum 
        effect over the entire region. India has agreed to undertake 
        extra rounds of NIDs in 1999 in order to accelerate the drive 
        to eradicate polio by the target date.
  --Despite economic difficulties and civil conflict, more than 40 
        African countries conducted National or Sub-National 
        Immunization Days during 1997/1998, as part of the continent-
        wide ``Kick Polio Out of Africa'' campaign championed by South 
        African President Nelson Mandela, reaching nearly 70 million 
        children. Polio-free zones are emerging in both Northern and 
        Southern Africa.
  --With the help of the world community, all remaining polio-endemic 
        nations, including those in the midst of severe civil conflict, 
        have now started down the path to polio eradication by 
        undertaking NIDs or Sub-National Immunization Days.
  --The three-year ``Operation MECACAR'' (Middle East, Caucasus, 
        Central Asian Republics) immunization campaign has been deemed 
        a success, virtually eliminating polio from 19 contiguous 
        countries stretching from the Middle East to Russia. For 1998, 
        polio cases reported from WHO's European region have been 
        confined to Southeastern Turkey.
  --China has reported no laboratory-confirmed indigenous polio cases 
        for three years, and the last case of polio in the entire 
        Western Pacific was detected in Cambodia in March 1997. We and 
        our partners believe that the Western Pacific can be certified 
        polio-free early in the year 2000.
    the role of the u.s. centers for disease control and prevention
    Rotary commends the CDC for its leadership in the global polio 
eradication effort, and greatly appreciates your Subcommittee's support 
of the CDC's polio eradication activities. For 1999, you appropriated a 
total of $67.2 million for the CDC's global polio eradication 
activities, which included $20 million in the Public Health and Social 
Services Emergency Fund. Because of Congress' unprecedented support, in 
1999 the CDC is:
  --Supporting the international assignment of more than 70 long-term 
        epidemiologists, virologists, and technical officers to assist 
        the World Health Organization and polio-endemic countries to 
        implement polio eradication strategies.
  --Providing over $35 million to UNICEF for approximately 400 million 
        doses of polio vaccine and operational costs for NIDs in some 
        60 countries in Asia, Eastern Europe, the Middle East and 
        Africa. Many of these NIDs would not take place without the 
        assurance of the CDC's support.
  --Providing over $10 million to WHO for surveillance and NIDs' 
        operational costs, primarily in Africa. As successful NIDs take 
        place, surveillance has emerged as a critical need, to 
        determine where polio cases are continuing to occur.
  --Helping to support countries such as Afghanistan, Angola, D.R. 
        Congo, Liberia, Nigeria, Sierra Leone, Somalia and Sudan in 
        planning and conducting NIDs despite ongoing civil conflict. 
        The CDC's logistical support was critical to the success of 
        Liberia's first-ever NIDs earlier this year. In the Democratic 
        Republic of the Congo, the only populous polio-endemic country 
        which has not conducted full NIDs, warring factions have now 
        agreed to ``days of tranquillity'' in order to allow 
        immunization campaigns to take place in July and August.
  --With the additional $17 million increase in polio eradication funds 
        in the President's fiscal year 2000 budget request, the CDC 
        would be able to provide an additional $8 million for polio 
        vaccine for use in extra rounds of NIDs and mopping-up 
        activities during the intensification phase, an additional $5 
        million to WHO to support surveillance, and an additional $4 
        million for laboratory support and expansion of field staff.
                  other benefits of polio eradication
    Increased political and financial support for childhood 
immunization has many documented long-term benefits. Polio eradication 
is helping countries to develop public health and disease surveillance 
systems useful in the control of other vaccine-preventable 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. As a result of this success, measles has been 
targeted for eradication in the Americas by the year 2000. The disease 
surveillance system--the network of laboratories and trained personnel 
built up during the Polio Eradication Initiative--is now being used to 
track measles, Chagas, neonatal tetanus, and other deadly infectious 
diseases. NIDs have been used as an opportunity to give children 
essential vitamin A, as well as polio vaccine. The campaign to 
eliminate polio from communities has led to increased public awareness 
of the benefits of immunization, creating a ``culture of immunization'' 
and resulting in increased usage of primary health care and higher 
immunization rates for other vaccines. It has improved public health 
communications and taught nations important lessons about vaccine 
storage and distribution, and the logistics of organizing nation-wide 
health programs. Lastly, the unprecedented cooperation between the 
public and private sectors serves as a model for other public health 
initiatives.
        resources needed to finish the job of polio eradication
    The World Health Organization now estimates that approximately $890 
million in external funds is needed to help polio-endemic countries 
carry out the polio eradication strategy during the critical years 
1999-2001. The estimated shortfall for the three years 1999-2001 now 
stands at nearly $370 million. In the Americas, some 80 percent of the 
cost of polio eradication efforts were borne by the national 
governments themselves. However, as the battle against polio is taken 
to the poorest, least-developed nations on earth, and those in the 
midst of civil conflict, many of the remaining polio-endemic nations 
can contribute only a small percentage of the needed funds. In some 
countries, up to 100 percent of the NID and other polio eradication 
costs must be met by external donor sources. We are asking that the 
United States continue to take the leadership role in meeting this 
shortfall.
    The United States' commitment to polio eradication has stimulated 
other countries to increase their support. Belgium, Canada, Germany, 
Finland, Italy, and Norway are among those countries which have 
followed America's lead and have recently announced special grants for 
the global Polio Eradication Initiative. Japan and Australia are major 
donors in Asia and the Western Pacific, and Japan has also expanded its 
support to polio eradication efforts in Africa. Denmark, Germany and 
the United Kingdom have made major grants that will help India 
eradicate polio by the target year 2000. In addition, last summer U.K. 
Prime Minister Tony Blair announced a grant of U.S. $30 million to 
ensure that Kenya, Tanzania, and Uganda also meet the eradication goal.
    By the time polio has been eradicated, Rotary International expects 
to have expended approximately $500 million on the effort--the largest 
private contribution to a public health initiative ever. Of this, $334 
million has already been allocated for polio vaccine, operational 
costs, laboratory surveillance, cold chain, training and social 
mobilization in 120 countries. Over the past 18 months, realizing the 
increased role which external donors need to play in order to ensure 
that polio eradication is not jeopardized due to lack of resources, The 
Rotary Foundation has committed an additional $40 million to its 
PolioPlus Fund. More importantly, we have mobilized tens of thousands 
of Rotarians to work together with their national ministries of health, 
UNICEF and WHO, and with health providers at the grassroots level in 
thousands of communities.
    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. 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 present written testimony.
                                 ______
                                 
 Prepared Statement of Richard J. Boxer, Board of Directors, Lymphoma 
                     Research Foundation of America
    Chairman Specter and Members of the Subcommittee: Thank you for the 
opportunity to present written testimony to you on behalf of the 
Lymphoma Research Foundation of America, LRFA, and more importantly, 
the over 600,000 American men, women, and children who are living with 
the diagnosis of lymphoid cancers (Hodgkin's and non-Hodgkin's 
lymphoma, chronic and acute lymphocytic leukemia), and the millions who 
have died of these diseases or will be diagnosed in the future. We 
believe it is critical for this Committee to support the basic research 
and clinical trials that one day will allow us to speak about lymphomas 
in the past tense. Your support will place this dreaded disease in the 
history books alongside polio, smallpox, and other conquered health 
problems.
    I am on the Board of Directors of the Lymphoma Research Foundation 
of America, the nation's largest organization dedicated to providing 
comprehensive information and support to lymphoma patients, their 
families, and friends. The Lymphoma Research Foundation of America also 
finances research into better and safer treatments for those patients 
with a lymphoma. By the summer of 1999 seventy-two research projects 
totaling nearly two and a half million dollars will have been funded by 
our organization. In addition to research, LRFA spearheads National 
Lymphoma Awareness Week, and also provides a comprehensive slate of 
educational and support programs, which includes: a quarterly 
newsletter, a buddy program, clinical trials information, physician 
referrals, and educational forums. But more importantly than the money 
we have raised, we have raised hope for those with the disease.
    I did not choose to be here today. My family and I would have done 
anything to avoid me testifying about lymphomas. But the disease chose 
me to be here. I am one of the fortunate victims of the disease, for I 
have been cured. I was diagnosed with non-Hodgkin's lymphoma in 
November 1995 and underwent the removal of my spleen and a portion of 
my pancreas, seven courses of chemotherapy, and a bone marrow 
transplant in the successful treatment of my cancer. It has taken a 
tremendous toll upon my life and my family's life, and taught me about 
the other side of health care, for I had been treating cancer for 25 
years before I was one of its victims.
    One out of every two American men and one out of every three 
American women will develop cancer in their lifetime. As a urologist 
who had been treating prostate, kidney, bladder, and testicular cancers 
for 25 years, the severe effects upon my patients and their families 
were constant, yet objective and distant parts of my life. When I 
developed cancer, suddenly I was wearing the mortifying fear and 
anguish that I had seen wrap the faces of my patients. I was now a 
statistic, not a provider.
    I was searching for the finest treatment, and worrying whether my 
health insurance carrier would cover the expenses. I was facing the 
disability of a prolonged illness, and wondering how my business and 
home expenses were going to be paid. I experienced the cold objectivity 
and the warm humanism of my health providers. I experienced the doubts 
about the therapeutic choices and the lack of knowledge about the 
outcomes. I endured the pain of surgery, the life-draining 
chemotherapy, a bone marrow transplant. I was the recipient of the 
profound benefits of the research and clinical trials that has lifted 
the darkness of the unknown and provided me with a chance to be cured. 
I live because of those patients who came before me and the research 
performed by scientists. What I learned, I now share with my patients 
and colleagues with the intent that I have gone through my experience 
for a reason.
    The statistics about lymphomas are staggering:
    1. The incidence of lymphomas is rising faster than all but one 
other cancer in America
    2. More than 600,000 Americans are living with the diagnosis of a 
lymphoma
    3. It is the fourth leading cause of death by cancer of men 25-60 
years old
    4. It is the fifth leading cause of death by cancer in women 25-60 
years old
    5. Sixty percent of childhood cancers are lymphomas or related 
diseases (leukemia)
    6. More than 88,600 Americans will be stricken by lymphoid cancers 
in 1999
    7. The incidence of Non-Hodgkin's lymphoma has risen by 85 percent 
since the early 1970's
    8. Fifty percent of those diagnosed with lymphoid cancers will die 
of the disease
    9. Lymphoid cancers represent 7.3 percent of all cancers diagnosed 
in America
    10. Lymphoid cancers, which kill in the prime of life, represent 
8.8 percent of cancer deaths
    11. Lymphoma research represents just 2.4 percent of the National 
Cancer Institutes' budget
    12. Although there have been advances in the basic knowledge and 
treatments of lymphoid cancers, there has been a continued rise in the 
incidence and the human suffering of the diseases.
    I carry a message of hope, for I am the embodiment of hopes and 
dreams of anyone who has or will have a lymphoma--I have been cured as 
a result of the art and science of medical research in large part 
funded through the generosity of the American people and because of the 
leadership of the Congress.
    I carry a message of fear, for I was struck down, but not out, by 
an insidious disease. And it could happen to anyone. It could happen to 
you or your loved ones. There is also the fear of the unknown: What 
effects and damage will the massive and debilitating chemotherapy visit 
upon the ``cured'' patient in the future?
    I carry a message of urgency, for there will be over 88,600 
Americans diagnosed with lymphoid cancers in 1999, and half will die 
due to the disease. These chilling statistics will continue until an 
answer is found. You have the power and responsibility to provide the 
courage and leadership to increase the funding that will eventually 
lead to the discovery of the cure, and prevention of lymphoid cancers.
    Last year, Congress took the courageous step of declaring its 
desire to double the NIH budget by 2003. The fifteen percent ``down 
payment'' that was appropriated last year sent a significant message to 
the nation, and particularly the research community that Congress was 
very committed to the eradication of cancer. The Lymphoma Research 
Foundation of America strongly endorses the Ad Hoc Group of Medical 
Research Funding for a doubling of the budget of the National 
Institutes of Health over the next five years.
    By increasing the budget now, and therefore bringing closer the 
time when lymphoid malignancies are prevented and cured, the Congress 
is acting fiscally responsible for the future. Certainly, an ounce of 
prevention is worth a pound of cure. By investing now, you will save 
billions of dollars in the future, for the nation will not be burdened 
with the expense of caring for the victims of lymphoid cancers. This 
investment will not only save dollars, it will save hundreds of 
thousands of Americans the misery of the disease and the death caused 
by it.
    Specifically, the Lymphoma Research Foundation of America requests 
that the Subcommittee include in its Fiscal 2000 Committee Report 
language calling for:
    1. Increase appropriations for lymphoma research at the National 
Cancer Institute.
    2. Promote new innovative research models based upon collaborative 
methods to maximize current lymphoma research funded by the National 
Cancer Institute.
    3. Promote research into the currently incurable low-grade and 
aggressive lymphomas
    4. Coordinate research efforts with the National Institute of 
Environmental Health Sciences (NIEHS) and the Centers for Disease 
Control (CDC) to explore the environmental and other factors 
responsible for lymphomas.
    Just as the courageous American soldiers fought on the front lines 
of battlefields to preserve our freedoms from assault by a foreign 
enemy, and the scientists labored to give them the most modern weapons 
with which to fight, all funded by past Appropriations Committees, the 
front line doctors and research scientists rely upon the members of 
this Subcommittee to fund a battle that has claimed more lives than all 
the wars this country has ever fought. The enemy is different, but no 
less deadly. When will we join together, Democrats and Republicans, and 
declare that enough is enough? When do our priorities change to 
increase our focus on the most basic fundamental needs of all 
Americans--the freedom from cancer?
    In the name of the tens of thousands of men, women, and children 
who will be stricken with lymphoid cancers, strike back. Strike a blow 
against this killer. Increase the funding of the National Institutes of 
Health and specifically the National Cancer Institute, and express 
concern over the rapidly rising incidence of lymphoid cancers.
    Thank you for the opportunity to present written testimony for the 
record.
                                 ______
                                 
 Prepared Statement of Joan I. Samuelson, J.D., President, Parkinson's 
                             Action Network
    The Parkinson's Action Network was created in 1991 to give voice to 
a community that has been largely invisible, and to increase funding 
for Parkinson's research in an effort to speed research, deliver 
breakthroughs and cure this dreadful disease.
    I am one of a million Americans who suffer with Parkinson's 
disease. Parkinson's is a devastating progressive neurological disease 
that makes it difficult to walk, causes uncontrollable tremors, and in 
its final states robs individuals of the ability to speak or move. It 
is caused by the degeneration of brain cells that produce dopamine, a 
neurochemical controlling motor function
    Contrary to popular myth, Parkinson's is not a disease that affects 
only the elderly. I was diagnosed at 36. Michael J. Fox was in his 
early 30s. In fact, the average age of onset is 57, with one third of 
all victims' symptoms starting in their 20s, 30s and 40s. The prognosis 
for Parkinson's patients is a grim one: more than a third lose their 
jobs within one year of diagnosis; daily functioning becomes increasing 
difficult; treatments become ineffective, or cause complicated side-
effect. The battle against loss of function is ongoing, expensive and 
in the end a losing one.
    Conventional treatment for Parkinson's is a 30-year old drug 
commonly known as ``L-dopa'' which tries to replace the missing 
dopamine with an artificial substitute. It usually restores function to 
a certain extent and at first may seem like a miracle drug. But it 
works inefficiently, produces side effects, and eventually does not 
work at all. As the dopamine cell degeneration advances, we lose the 
automatic movements needed to walk, talk, swallow--eventually becoming 
unable to move at all.
    I am one of the fortunate ones who, despite my disability, can 
still participate in society enough to appear before you and share this 
story. With each passing month, however, I see the day approaching when 
that will not be possible.
    I am here today because my life--and the life of all Parkinson's 
patients--depends on it. Without a more rigorous commitment to funding 
Parkinson's research the promise of better more effective treatments--
or finding a cure altogether--will remain beyond the reach of my 
generation, and perhaps generations to come.
    This need not happen. Research on Parkinson's disease is at a major 
crossroads, with important new scientific opportunities for a quantum 
leap in treatments for Parkinson's and related disorders. In fact, 
leading scientists identify Parkinson's as the neurological disorder 
most likely to produce a breakthrough therapy and/or cure. To reach 
that point, however, there are several areas needing a more aggressive 
research investment:
  --Epidemiological and Environmental Research.--A major new finding 
        has narrowed the cause of classic Parkinson's, eliminated 
        inherited genetic factors, and points to outside ``triggers'' 
        such as environmental toxins that result in dopamine cell death 
        and Parkinson's symptoms.
  --Brain Repair.--Parkinson's-focused research, applying current basic 
        scientific findings to development of an effective reversal of 
        Parkinson's effects, is driving this new neuroscientific field. 
        With Neural Growth Factors, researchers are identifying a 
        growing number of proteins that function to nurture nerve 
        cells, and even appear to restore life to ``dead'' tissues. 
        With Neural Cell Transplantation, researchers have implanted 
        neural tissue into the degenerated area of the brain and proven 
        that the new cells can thrive and renew production of dopamine. 
        And Cell Line Development research is discovering several ways 
        that a sufficient supply of cells can be made available.
  --Increased Understanding of Disease Process.--Scientists are 
        increasing their insights of the Parkinson's disease process in 
        which the cells appear to self-destruct after assaults from one 
        or more causative factors, particularly environmental factors.
  --Role of Genetics.--Recent discoveries have advanced our 
        understanding of the role of genetics in Parkinson's, bringing 
        about new clues about the disease process. A widely cited 1997 
        discovery of the alpha-synuclein gene did not produce a causal 
        gene per se, but is a major clue in the matrix of understanding 
        Parkinson's. Moreover, the finding eliminating a genetic role 
        in classic Parkinson's has also found one in ``young onset'' 
        cases like mine, when symptom onset occurs before age 50.
    These discoveries, however, are coming in slow motion. Scientists 
in the field describe immense frustration with the halting pace of 
research breakthroughs because of inadequate funding for Parkinson's 
research. They tell us there is a correlation between an investment in 
research and improved treatments or finding a cure. But first, the 
funds must be found, and spent. Funding for Research on Parkinson's and 
Related Disorders
    When Congress passed the Morris K. Udall Parkinson's Research Act 
in 1997 the Parkinson's community believed the time for investing in 
Parkinson's research had finally come. This landmark legislation 
authorized $100 million in research at the National Institutes of 
Health for research focused on Parkinson's disease.
    NIH, however, has not fulfilled the promise of the Udall Act. In 
fact, they have misrepresented the amount of funding being spent on 
Parkinson's research--short changing those who suffer every day with 
this dreadful disease and undermining Congressional intent.
    Last year, the Parkinson's Action Network assisted Congressman Fred 
Upton--lead House sponsor of the Udall Act--in examining how much of 
the fiscal year 1997 funding the NIH counted as ``Parkinson's 
research'' was actually being spent on Parkinson's focused research as 
required by the Udall Act. NIH reported to the Congress that 40 percent 
of its funding went to ``direct'' research on Parkinson's and 60 
percent funded ``related'' research.
    Congressman Upton obtained from NIH a list of Parkinson's research 
grants for fiscal year 1997 totaling $89.2 million. We then collected 
abstracts for each of the grants and distributed them to 8 independent 
evaluators--all of whom conduct research with a focus on Parkinson's 
disease and related disorders--at some of the most prestigious medical 
schools or biomedical facilities across the country. They each hold 
M.D. and/or PhD. degrees with specialties in the fields of neurology, 
basic neuroscience, neuropathology, neuropharmacology, or 
neurotoxicology. Six of the evaluators were chairs of their departments 
and all had experience with the NIH extramural grant system as grant 
recipients. The majority also serve as members of NIH peer review study 
sections.
    The evaluators received 373 grant abstracts and were asked to 
review the grants and assign them to one of three categories: 
``focused,'' in which the principal focus of the research is the cause, 
pathogenesis, and/or potential therapies or treatments for Parkinson's 
disease; ``related,'' in which the research is likely to have some 
benefit in finding the cause, pathogenesis, and/or potential therapies 
or treatments for Parkinson's disease, although that is not the 
principal focus of the research project; or ``non-related'' research, 
in which the research is unlikely to have residual or direct benefit to 
finding the cause, pathogenesis, and/or potential therapies or 
treatments for Parkinson's disease.
    What our evaluators found was shocking: close to 40 percent ($34 
million) of the funding dollars NIH purported to spend on Parkinson's 
disease did not support Parkinson's research at all. In all, the 
evaluators found that 149 of the 373 grants were ``unrelated'' and 
unlikely to have a direct OR residual benefit to finding the cause, 
pathogenesis, and/or potential therapies or treatments for Parkinson's.
    Included in this list were grants focused on other diseases, 
including Alzheimer's, Huntington's, drug abuse, even AIDS, as well as 
work at the National Institute of Diabetes and Digestive Diseases. As 
one scientist put it, ``it appeared that any neurodegenerative disease 
was included. This is like trying to figure out how the motor of a car 
works by studying the muffler. They are both parts of the same car, but 
understanding exhaust helps little in the understanding of the motor.''
    The study also found that only about one-third (34 percent) of the 
research was clearly dedicated to Parkinson's focused research. That 
means that for fiscal year 1997, the NIH spent only $31.5 million on 
research that is likely to have a direct benefit to finding the cause, 
pathogenesis, and/or potential therapies or treatments. This falls far 
short of the promise of the Udall Act.
    At best, the evaluators found that an additional 27 percent (or $24 
million) of the funding was related research--research that was likely 
to have some indirect benefit in finding the cause, pathogenesis, and/
or potential therapies or treatments for Parkinson's disease.
    For fiscal year 1999, the NIH says they will spend $106 million on 
Parkinson's research. What part of that will be totally unrelated to 
Parkinson's? What small part may actually lead to understanding the 
disease, finding a cure, and improving treatment and the quality of 
life of individuals suffering with Parkinson's?
    Far too little we fear.
    The Parkinson's Action Network believes that Congress must act to 
ensure that NIH lives up to the statutory requirements Congress 
established when it unanimously adopted the Udall Act in honor of its 
colleague in 1997. It is too late to help Mo Udall, but it is not too 
late to honor his memory and help an entire generation by speeding the 
way to new breakthroughs. The Network urges the Committee to direct NIH 
to meet its obligations under the Udall Act and fund at least $100 
million on ``research focused on Parkinson's disease.'' Without such a 
directive we feel certain that funding for Parkinson's focused research 
will fall far short. It will be far short of what is required by law. 
It will be far short of what is needed to conduct a vigorous research 
effort that will lead to new treatments and eventually a cure. And it 
will be far short of what is necessary to give hope to people like me 
who don't have decades to wait for a cure.
                           stem cell research
    Recent findings of the isolation of embryonic stem cells, capable 
of forming all cells of the human body, holds tremendous promise for 
saving human lives. These cells have the potential to become a source 
of replacement cells for any failing organ enabling therapies to treat 
conditions that otherwise would be addressed by whole organ 
transplants. They also have the potential to fundamentally change 
pharmaceutical development by allowing researchers to study the 
beneficial and toxic effects of drugs on many different cell types and 
potentially reduce the numbers of animal studies and human clinical 
trials required for drug development.
    It is not unrealistic to imagine that, with appropriate funding of 
research, that scientists may soon learn to produce healthy, dopamine-
producing neurons for the treatment of Parkinson's disease. Indeed, in 
recent hearings of the Senate Appropriations counterpart to this 
Subcommittee, the stem cell experts called to testify on its promise 
identified Parkinson's as the first disorder for which a stem cell 
therapy is likely. This means, in short, that my rescue from 
Parkinson's may be speeded by this research, and that those 
breakthroughs will assist the development of comparable therapies for 
other, equally terrible disorders.
    The Parkinson's Action Network understands that there is some 
concern about the research in embryonic stem cells and the source of 
those cells. We also understand that it may be some years before stem 
cell technology produces benefits for patients, many years of further 
research may be necessary to overcome technical hurdles and that the 
effort will require a significant funding investment. It is exactly for 
that reason that we cannot afford any unnecessary delay.
    Just as Congress grappled with and supported research on fetal 
tissue transplantation because of its enormous life-saving potential, 
so too should it support stem cell research. Without government 
support, there is little accountability and relatively little 
accessibility to the larger scientific community. And just as Congress 
adopted thoughtful, workable, ethical guidelines and protections in 
support of fetal tissue transplantation research based on the findings 
and recommendations of the NIH Fetal Tissue Transplantation Panel, so 
too the government can develop clear ethical guidelines and protections 
in the arena of stem cell research.
    Stem cell research is too promising to impede or stop altogether. 
We urge the Committee to support this potentially life-saving research.
    Thank you.
                                 ______
                                 
   Prepared Statement of the National Association of Pediatric Nurse 
                      Associates and Practitioners
    I appreciate the opportunity to provide the subcommittee members 
the position of the 5,600 National Association of Pediatric Nurse 
Associates and Practitioners (NAPNAP) members. I respectfully request 
that our statement be included in the record.
    Founded in 1973, NAPNAP is the largest nursing organization 
dedicated solely to improving the quality of health care of children 
from birth to the age of 21. Pediatric nurse practitioners (PNPs), are 
registered nurses with advanced education and training who provide 
health care services and have prescriptive authority in 50 states. 
Nurse practitioners (NPs) were recognized in the Balanced Budget Act of 
1997 as primary care providers and are directly reimbursed by the 
Medicare program in all settings. Now more than ever, advanced practice 
nurses like PNPs are front line, point of contact providers of primary 
care services to an increasing number of Americans--often delivering 
services to our most vulnerable populations.
    PNPs deliver a broad range of services to children from birth to 
age 21. They regularly perform physical examinations, treat common 
childhood illnesses, coordinate the care for children with chronic 
illnesses, and help families with other critical health care needs. 
NAPNAP is extremely concerned about the Federal government's 
involvement in nursing licensure--an area traditionally left to the 
purview of the states--and respectfully requests that the subcommittee 
not fund any activities related to a multistate Nurse Licensure Compact 
initiative. Additionally, NAPNAP urges the subcommittee to recognize 
the integral role played by PNPs in private sector and government 
initiatives to improve access to primary care services, especially in 
rural and medically underserved areas. We request your favorable 
consideration of the following spending levels for these three 
programs:
    (1) Nurse Education Act: 10 percent increase over fiscal year 1999 
funding to $74.6 million and fully fund NP education programs.
    (2) National Institute of Nursing Research (NINR): 15 percent 
increase over fiscal year 1999 funding, commiserate with funding 
increases to other institutes.
    (3) National Health Services Corps (NHSC): continue to support the 
NHSC at current levels for nurse practitioner programs and urge the 
appropriate utilization of PNPs.
       federal involvement in nurse licensure compact activities
    Of critical importance to NAPNAP is the subcommittee's continued 
vigilance in keeping the federal government out of the business of 
funding a misguided proposal to alter the regulation of nurse 
licensure. Last year, the Congress recognized the lack of support 
around a proposal for states to enter into the proposed Nurse Licensure 
Compact. The compact radically alters nursing regulation and requires 
states to abdicate their authority to set licensure standards. In the 
conference report for the Omnibus Consolidated and Emergency 
Supplemental Appropriations Act, 1999, Congress deferred taking action 
on a recommendation contained in the Senate report regarding the 
interstate nurse licensure compact, pending the resolution of important 
issues. Since the model multistate licensure compact legislation was 
released in 1997, only Utah and Arkansas have entered into this 
agreement. Conversely, a growing number of nursing groups, State 
Attorneys General, and administrative law experts have raised grave 
concerns about the constitutionality of the agreement and its long term 
impact on nursing, other health professions, and access to health care 
services.
    The fiscal year 1999 appropriations conferees ``understood that 
several States have not endorsed the compact and some State Boards of 
Nursing and other Nursing Organizations have raised reservations about 
the compact.'' Since that report, none of the overarching concerns 
about the compact have been resolved and there are no plans by the 
organization pursuing this legislation to make changes to the 
legislation. Given that, NAPNAP urges the subcommittee to reject any 
proposal to fund the costs associated with the adoption of the nurse 
licensure compact.
                            nurse education
    The Health Professions Education Act is the sole source of federal 
support for advanced practice nursing education. Advanced practice 
nurses (APNs) include nurse practitioners, certified nurse midwives, 
clinical nurse specialists, and certified registered nurse 
anesthetists. APNs are in increasing demand in the health care market, 
and traditionally have filled the void in communities that have not 
been able to attract a primary care physician. In many rural and 
medically under-served areas, NPs have contributed to a decline in 
emergency room visits, and by extension a decrease in health care 
expenditures by patients and insurers. Continued support for a diverse 
group of advanced practice nurses prepared as primary care providers 
will enable the government to honor its commitment to meeting the 
primary care needs for all Americans.
    Last year, Congress passed the Health Professions Education Act of 
1998 (PL 105-392), which reauthorized the Nurse Education programs, 
consolidated some funding programs, and directed the Division of 
Nursing to conduct a workforce study to better understand the role and 
need for nonphysician practitioners such as NPs. NAPNAP respectfully 
requests that funding for the APN category of the Nurse Education Act 
receive a 10 percent increase over fiscal year 1999 levels. We urge the 
subcommittee to fund the NP/midwifery program within the APN category--
at a minimum--to the fiscal year 1999 levels.
    Part of the Health Professions Education Act which passed last year 
included a ``hold harmless'' provision for the NP/midwife education 
program until the workforce study was produced. The Division of Nursing 
has not completed this study, and we believe that the intent of the 
authorization was to keep the NP/midwife program at least funded at the 
level of fiscal year 1999. We request that the subcommittee maintain 
the ``hold harmless'' intent of the law.
                national institute for nursing research
    The National Institute for Nursing Research (NINR) is one of the 
smallest NIH entities despite the growing responsibility of nurses, 
especially advanced practice nurses, for the primary care and case 
management of patients in all settings. In fiscal year 1999, NINR 
received a budget increase of only 10 percent over fiscal year 1998, 
less than the 14.7 percent budget increase for the overall National 
Institutes for Health. To compensate for the disproportionate increase 
last year and in line with anticipated fiscal year 1999 NIH spending, 
we respectfully request that the subcommittee endorse an increase for 
NINR commensurate with overall NIH funding levels.
    This increase would provide funding sufficient to empower NINR 
researchers to explore the vast complexities of ``end-of-life'' care; a 
research area for which NINR was identified as the lead institute. End-
of-life care involves the synthesis of complex care, pain management, 
and mental health services for patients and their families. 
Furthermore, NINR represents researchers who come from the largest 
health care profession--nursing. Nurses have been at the forefront of 
many breakthrough developments in patient care, outcomes, and cost 
effectiveness; avoiding low birth weight babies; and maximizing the 
quality of life of people living with chronic conditions. As the 
subcommittee knows, nurses continue to be front line providers of care 
for the growing population of our nation's elderly. Research which will 
directly benefit services deserves sufficient NIH financing.
                     national health service corps
    The National Health Service Corps (NHSC) has been instrumental in 
delivering vital health care services to rural and medically 
underserved areas. In December 1997, the Federal government estimated 
that close to 30 million individuals lived in underserved areas and 
5,385 primary care providers were necessary to meet existing demand for 
health care (Senate Report 105-220, p 14). In addition, there are 146 
counties without a physician, more than 50 percent of which are being 
served by a NP or a physician assistant (PA). NHSC funding makes this 
possible; however there are still approximately seventy counties not 
served by either a physician, NP, or PA and could benefit from NHSC 
support. We urge your continued support of this important program.
    Furthermore, NAPNAP has grave concerns regarding a shift in the 
National Health Service Corps policy on the placement of PNPs in 
underserved areas. Traditionally, the program has paid for both family 
nurse practitioners and pediatric nurse practitioners; however in 1997, 
NHSC moved to eliminate PNPs from consideration for NHSC scholarships 
without any assessment mechanism as to whether this detracts from the 
government's ability to meet community needs. This shortsighted policy 
fails to recognize diverse community needs and the PNP's overall nurse 
practitioner preparation. Because of the impact of this policy on 
patient access to care, we urge the committee to support report 
language directing NHSC to reinstate PNPs as eligible scholarship 
recipients for these rural and medically underserved sites.
    On behalf of NAPNAP, I thank the committee for this opportunity to 
present our views on the vital funding of nursing programs. We look 
forward to working with you through the appropriations process and 
welcome any questions, comments, or concerns you might have.
                                 ______
                                 
Prepared Statement of the National Alliance for Eye and Vision Research
    The National Alliance for Eye and Vision Research (NAEVR) is 
pleased to have the opportunity to submit its views on fiscal year 2000 
funding priorities. NAEVR is an umbrella organization of twenty-eight 
professional, lay advocacy and industry organizations dedicated to eye 
and vision research.
    We would like to begin by thanking you for your commitment to 
medical research supported by the National Institutes of Health (NIH) 
and the National Eye Institute (NEI). Mr. Specter, you and your 
colleagues have been tremendously supportive of pushing the frontiers 
through support of the NIH. Without this support we would not be on the 
verge of many new discoveries in eye and vision research. We are 
beginning to reap the benefits of our investment due to the amazing 
advances in basic and clinical science, but more and more we are forced 
to prioritize what areas of research to support because we do not have 
the funding available to fund all of the opportunities that exist. This 
is true in all areas of vision research, and in the public and private 
sectors.
                    fiscal year 2000 funding request
    The sixth strategic plan of the National Advisory Eye Council, 
entitled Vision Research--A National Plan: 1999-2003, provides for a 
professional budget recommendation of $456.1 million, 15 percent over 
the fiscal year 1999 level. This recommendation is in line with the Ad 
Hoc Group for Medical Research Funding's recommendation of a 15 percent 
increase, which our 28 member organizations wholeheartedly support. Key 
research priorities which are well identified in the strategic plan 
include the following:
  --Retinal Diseases: Identify novel causes of inherited retinal 
        degenerations; further examine the cellular and molecular 
        mechanisms whereby identified gene defects cause retinal 
        degenerations; begin to determine the cellular sites of retinal 
        gene expression in development and in health and disease
  --Aging: Determine if there are novel markers that differentiate the 
        normal aging process from the diseased process; identify genes 
        and genetic loci contributing to glaucoma, especially those 
        responsible for the most common form of the disease, and 
        characterize the function and interaction of their gene 
        products
  --Growth Factors: Determine the role of peptide growth factors, such 
        as neurotrophins, in the development, plasticity, and 
        regeneration of the visual pathways; determine how critical 
        periods are regulated and manipulate the molecular signals 
        underlying this regulation to enhance the adaptive and 
        regenerative properties of the adult brain
  --Clinical Research: Improve our understanding of the nature and 
        course of glaucoma, incorporating studies of comorbidity, 
        natural history, and genetics with special emphasis on 
        Hispanic, Native American, and African-American populations; 
        develop improved diagnostic techniques encompassing measures of 
        visual function, optic nerve, and nerve fiber layer structure, 
        in situ and for clinical applications of genetics; investigate 
        the effectiveness of immunomodulating therapies in halting 
        disease progression in optic neuritis; identify the unique 
        characteristics of ocular muscles that render them vulnerable 
        to Graves' ophthalmology, myasthenia gravis, orbital myositis, 
        and chronic progressive external opthalmoplegia.
                 disparity in nei growth vs. nih growth
    Mr. Chairman, the eye and vision research community is becoming 
increasingly concerned about the disparity in growth between the NEI 
and the NIH. We have analyzed specific trends with regard to the 
Administration's Requests and the Congressional Appropriation for NEI 
funding and are alarmed at several patterns which have emerged. Most 
importantly, when these trends are analyzed and, appropriations are 
adjusted for inflation to reflect real purchasing power, the NIH has 
grown by more than 60 percent while the NEI has grown by only 24 
percent since 1985.
    How has this level of disparate growth occurred? There have been 
many factors contributing to this disparate growth rate. As an example, 
in fiscal year 1999 the overall increase in the budget request for NIH 
was 8.4 percent while the NEI request was 8 percent. What alarms the 
eye and vision research community is the fact that when the 
Appropriations Process was completed the overall NIH increase was 14.7 
percent while the percentage increase for the NEI was 11.3 percent, the 
second smallest of all NIH Institutes. Mr. Chairman, we have been 
informed that the Committee's distribution of resources above the 
Administration's proposal was done in collaboration with the scientific 
experts at the NIH in order to support the laudable objective of 
scientific priorities, not politics, driving the allocation of 
resources. Regrettably, the tremendous research opportunities in eye 
and vision research do not fare well under this scenario. At some point 
in these closed deliberations the opportunities and pressing health 
needs in eye and vision research are overlooked or deemed to be of 
lower priority when compared to other research opportunities. We would 
submit to both the Congress and the Administration that eye and vision 
research is a pressing priority in the context of improving the health 
and welfare of the fastest growing segment of the American 
populationthose over 65 years of age. We would also submit to the 
Congress that this trend in resource allocation must be given more 
careful scrutiny.
    We have been informed by some sources at the NIH that one of the 
critical variables influencing the allocation of resources among the 
Institutes is the issue of success rates for research grants. The NEI 
has one of the highest success rates among the NIH Institutes. The 
Institute does not support a broad network of specialized research 
centers or other ``umbrella'' grants as many of the other Institutes 
do. Therefore, the resources provided to the NEI are made available to 
the extramural research community primarily through the research grant 
mechanism to individual investigators. As a result, NEI's success rate 
is frequently better than the other categorical Institutes, 
disadvantaging the NEI from receiving additional resources to ``bring 
up the success rate'' of investigators. Thus, the NEI is disadvantaged 
in terms of growth and pursuit of scientific opportunity.
                growing threat of blinding eye diseases
    When asked what sense do you fear losing the most a majority of 
Americans respond ``vision''. In the U.S. today more than 1.1 million 
Americans are legally blind and an estimated 80 million are at risk of 
developing potentially blinding eye diseases. 120 million Americans 
wear corrective glasses or contact lenses and 12 million suffer from 
some form of visual impairment that cannot be corrected by glasses. 
Diabetic retinopathy is the leading cause of blindness for Americans 
under 60, accounting for 12 percent of new cases of blindness each year 
(24,000 people). Persons with diabetes are 25 times more at risk for 
blindness than is the general population. The annual cost of eye and 
vision disorders is $38.4 billion.
    As our population ages, these costs will increase significantly and 
present many challenges to our health care system. In fact, by the year 
2030, the elderly population in the U.S. is expected to double and more 
than 66 million Americans will be at risk for common eye diseases. It 
is only through further advances in research that we are going to gain 
a better understanding of vision disorders that can lead to cost-
effective advances in disease prevention and treatment. We now have the 
scientific and technological capability to make substantial progress in 
all areas of eye and vision research, if an expanded research effort is 
supported. This research progress will only be possible if we can 
insure that the NEI has the resources necessary to pursue initiatives 
in the key areas outlined in the Vision Research Plan. In order to give 
you a sense of the research needs and opportunities that exist today, 
we will outline several diseases and disorders where research has the 
most promise.
                    age-related macular degeneration
    The leading cause of blindness in the elderly is age-related 
macular degeneration (AMD), a retinal disease which causes loss of 
central vision. More than 1.7 million Americans over age 65 suffer from 
AMD and this number is expected to triple by the year 2020. 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 
some forms of AMD, no current treatments exist that will reverse the 
slow loss of central vision that results from this disease. However, 
recent research developments are encouraging. Scientists have mapped 
genes of several different forms of inherited macular disease, are 
exploring retinal transplantation and growth factors, and are testing 
new treatments including the effects of antioxidant on the progression 
of AMD. The NEI is also actively pursuing studies in the use of 
alternative therapies for the treatment of AMD. The Age-Related Eye 
Disease Study (AREDS), which is designed to improve our understanding 
of AMD and cataract, includes the study of the effect of vitamins and 
antioxidants as treatments for AMD and cataract.
                               low vision
    A related area of concern is low vision, or vision impairment which 
is not correctable by glasses or contact lenses. As many as 12 million 
Americans suffer from visual impairments which affect their ability to 
read, drive, work, and perform many everyday activities we all take for 
granted. The most common eye diseases which cause visual impairment in 
adults are AMD, cataract, glaucoma, diabetic retinopathy, and optic 
nerve atrophy. Even more serious are the eye diseases which cause 
visual impairment in children. These include retinopathy of 
prematurity, cortical visual impairment, and coloboma. Low vision in 
children often affects their development and results in the need for 
special education, vocational training, and social services throughout 
their lives. The cost of these impairments is more than $22 billion 
each year.
    Under the auspices of the National Eye Health Education Program 
(NEHEP), NEI is working with its private sector partners to launch a 
program directed at low vision in order to increase public awareness 
about visual impairment and the impact it has on everyday life. The 
program will provide information about low vision services and the 
devices which are currently available to assist those with visual 
impairments. This effort will not only be directed at those suffering 
from visual impairments but also to medical professionals, eye care 
specialists, managed care organizations, and family members. NAEVR 
supports this public education partnership and encourages the Committee 
to support it as well.
                                diabetes
    Diabetic retinopathy, the leading cause of blindness in individuals 
with diabetes, causes vision loss in more than 24,000 Americans each 
year. In fact, if a person has diabetes, they are 25 times more likely 
than the general population to go blind. Despite the success of 
research in developing treatments to slow the progression of blindness, 
little is known about the mechanism that triggers diabetic retinopathy.
    Researchers supported by the NEI are focusing their research 
efforts on gaining a better understanding of diabetic retinopathy by 
examining the cell biology of the retina, including cell growth 
factors; how blood flow is regulated in the retina; and the development 
of new drugs which inhibit an enzyme which appears to be involved in 
the development of diabetic retinopathy. Research in these areas will 
lead to better treatments, strategies for prevention, and hopefully, a 
cure.
                                glaucoma
    As many as three million Americans have glaucoma and approximately 
120,000 are blind because of this disease. It is the leading cause of 
blindness in African Americans and the second leading cause of 
irreversible vision loss overall in the United States. Glaucoma is a 
predominantly age-related disease and is especially prominent in the 
elderly population (75-80+). Specifically, at least 5 percent of white 
Americans and 10 percent of black Americans in this age group have this 
disease. In the last five years, as a result of NEI-sponsored glaucoma 
research, three new drug therapies, which lower intraocular pressure, 
have been introduced. Unfortunately, however, many individuals with 
glaucoma are not receiving treatment because glaucoma usually has no 
symptoms in its early stages and they are unaware that they have the 
condition.
                                cataract
    Cataract is the leading cause of blindness in the world. A cataract 
is a lens opacity which interferes with vision. It occurs most often in 
adults 50-60 years and older. In the U.S., 1.35 million cataract 
surgeries are performed each year to remove cataracts at an estimated 
cost of $3.5 billion, much of which is paid for by Medicare. Because 
the U.S. population is aging, it will be important to focus our 
research on what aging factors lead to cataract. At this point, little 
is known about events which trigger cataract formation. Several major 
hypotheses have been proposed to explain age-related cataracts. 
Researchers must now turn their attention to proving or disproving 
these hypotheses and improving our understanding of cataract formation.
                               conclusion
    Mr. Chairman, the members of NAEVR are supportive of an increased 
research focus on eye and vision disorders, such as those outlined 
above, and hope that the Committee will allocate additional funding to 
the NEI to allow these critically important research efforts to 
continue and expand. As we enter the 21st Century, we must ensure that 
we are doing our best to find ways to prevent and treat eye and vision 
disorders, and are providing quality eye care services and devices for 
those who are already suffering from visual impairment.
                                 ______
                                 
    Prepared Statement of the College on Problems of Drug Dependence
    We are requesting your support for increased funding for the 
National Institute on Drug Abuse (NIDA) in the fiscal year 2000 Labor, 
Health and Human Services appropriations bill. The College on Problems 
of Drug Dependence (CPDD) is the nation's longest standing organization 
addressing drug dependence and drug abuse.
    It is estimated that drug abuse and addiction cost the American 
public more than $110 billion per year, and the most effective means 
for reducing these costs is through improvement of drug use prevention 
and treatment. NIDA's scientific advances in understanding, treating 
and preventing drug addiction are making a dramatic impact on drug 
addiction treatment throughout this nation. Drug abuse treatment can be 
both effective and cost-effective resulting in dramatic drops in drug 
use and criminal behavior rates as well as improvements in physical 
health, social functioning, and employability. We believe that it is 
imperative to continue to invest in drug abuse research and the 
development of new effective and cost-effective treatments.
    The College recognizes the complexity of preventing and treating 
drug addiction. It is a health problem that defies simple solutions. 
Drug addiction is not a singular disease state that afflicts everyone 
similarly but rather an amalgamation of societal influences, genetic 
predisposition and comorbidity that when combined with the insidious 
properties inherent in drugs of abuse produces a clinical picture often 
easily recognized but difficult to prevent and treat. While the youth 
of our nation represent our most vulnerable population, the adults 
imprisoned for drug-related crimes represent one of our greatest 
financial burdens. The regression in both ranks in the future requires 
the development of more effective drug prevention programs. Yet, 
treating these disparate groups, as well as many others, requires 
tailored treatment programs that comprise behavioral modification as 
well as treatment with current and new medications. The College 
applauds the successes of NIDA in bringing new prevention strategies to 
unique populations and alerting the nation to new dangers through their 
epidemiological surveillance. Many of the College's members are 
treatment specialists who are poised to transfer their new forms of 
successful addiction treatments to the medical community through NIDA's 
new Clinical Trials Network. Yet, the heart and soul of the College and 
NIDA lies in the search for the biological basis of drug addiction. We 
are united in the goal of understanding the fundamental biological 
responses that sometimes bonds an individual to a never ending quest 
for self-administration of drugs. We recognize that unraveling the 
genetic code will provide the future answer as to why one individual 
succumbs to drug addiction and another is immune.
    Indeed, 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, few other governments support this research. There 
is little pharmaceutical industry research in this area and few 
foundations support any basic research, since the market potential for 
medications in this area is fairly modest. Despite NIDA's successes in 
developing new strategies for prevention and treatment of drug 
dependence, we are still faced with enormous challenges. New drug 
threats emerge, such as the recent methamphetamine epidemic, and 
shifting socioeconomic factors are just two of many factors that 
represent new struggles. However, the comprehensive portfolio of NIDA 
research agenda bodes well for the future.
    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). 
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. We do not have a specific recommendation for SAMSHA but 
we request that adequate support be provided for the demonstration and 
training programs supported by CSAT and CSAP.
    Thank you for the tremendous support and leadership you have 
provided during the last three fiscal years. We sincerely appreciate 
the 14.7 percent increase provided to NIDA in this fiscal year 1999 and 
urge that you increase this base in fiscal year 1999 to continue the 
ongoing peer-reviewed research funded by NIDA. Such research is 
essential for continuing to further our understanding of the etiology, 
prevention, and effective treatment of substance abuse problems. In 
fiscal year `99 NIDA was funded at $608 million. We ask for your 
support in increasing funding for NIDA by at least $94 million (15 
percent) in the fiscal year 2000 Labor, Health and Human Services 
Appropriations bill. This increase is consistent with efforts to double 
the entire NIH budget over a five-year period. We arerequesting an 
additional $30 million for funding the Clinical Trials Network. These 
additional funds will enable NIDA to fund ten new nodes in the Network 
that is vital for transferring new treatment knowledge to the medical 
community. Funds for the Clinical Trials Network are essential so as to 
avoid jeopardizing other vital programs at NIDA.
    Thank you for your time, and the opportunity to present the views 
of the College on Problems of Drug Dependence.
                                 ______
                                 
  Prepared Statement of Daniel D. Von Hoff, M.D., President, American 
                    Association for Cancer Research
    Good morning, Mr. Chairman and Members of the Subcommittee on 
Labor, Health and Human Services, Education and Related Agencies. My 
name is Dan Von Hoff. I am a doctor who has had the privilege of taking 
care of people with cancer over the last 20 years. I am also privileged 
to be President of the American Association for Cancer Research, the 
largest group of physicians and scientists dedicated to the cure and 
prevention of cancer in the world. And lastly, I am a cancer survivor.
    I know that for you and other Members of Congress there are many 
priorities and many requests. However, it is time to make cancer our 
highest health care priority and undertake a national approach to 
eradicate cancer.
    Cancer deaths fell for the first time in decades. This is a fall in 
the death rate. The percentage of the patients who will die from their 
cancers has gone down. This is a remarkable achievement and means that 
our treatments are beginning to have an effect. It also means that some 
of our prevention strategies are working. The death rate is going down! 
Still, remember that, even though the death rate from cancer is going 
down, cancer still kills more Americans each year than have died in all 
the wars we have fought in this century.
    However, because our population is aging and, thank goodness, we 
are all living longer, the number of people who will develop cancer in 
the United States will increase dramatically. If current rates are used 
to calculate the figures, the number of estimated new cases is expected 
to increase by 29 percent by 2010. Looking beyond 2010, the number of 
cancer cases is expected to reach 2 million new cases per year by 2025.
    Cancer will reach epidemic proportions. Remember that 1 of every 2 
men and 1 of every 3 women will get cancer in their lifetime. This 
epidemic will be a tremendous burden on the patients, their families, 
most certainly on this country and its health care system. 
Conservatively estimated, the projected economic burden due to the 
direct cost of treatment will increase to approximately $65 billion per 
year and the ``productivity'' cost (lost economic productivity due to 
disability and death) will grow to over $135 billion, for a total 
expected economic burden of over $200 billion annually in 10 years.
    What can we do to help head off this epidemic? There is hope if we 
take more actions now.
    Why is there hope? The death rate for patients with cancer has 
decreased because of:
    (1) Earlier Detection.
    (2) More effective and less toxic treatments for patients with 
advanced cancer.
    (3) Prevention.
    I will address each of these in turn:
    Earlier detection advances including mammograms for early detection 
of breast cancer, examinations of stool for blood to detect colon 
cancer, and tests for PSA's to detect prostate cancer have helped us to 
find these cancers earlier, when they are more curable.
    We are having much greater success in treating advanced cancer in 
patients. In a CAT scan of a patient's liver, it is possible to see 
breast cancer (large, obvious holes) before treatment, and clear of 
these holes after treatment with a new anticancer agent. She had a 
remarkable shrinkage of the tumor and is alive and well and working 8 
years later with no evidence of disease. So, even advanced disease can 
be eradicated in some patients.
    And we are learning how to prevent cancer:
    (1) First of all, stop smoking, stop smoking, stop smoking. Tobacco 
is responsible for more than 30 percent of all cancer deaths.
    (2) The New York Times documented the first major advance in 
prevention about one year ago when they reported that the antihormonal 
agent Tamoxifen could reduce the incidence of breast cancer in women 
who are at high risk for the disease.
    The effect of Tamoxifen was dramatic in the first 3 years. 
Tamoxifen reduced the risk of invasive breast cancer by 49 percent, and 
early (non-invasive) breast cancer by 50 percent. There were some side 
effects on which we are all working to improve, but the reduction in 
risk is truly an important result.
    In addition, I have just come down from Philadelphia, where the 
American Association for Cancer research held its largest international 
meeting. More than 10,000 researchers, physicians, survivors, 
advocates, and citizens learned about the breakthroughs in basic cancer 
research, which are the result of exciting advances in molecular 
biology and genetics; the discovery of new agents for treatment; and 
the latest strategies in cancer prevention. These include, among 
others:
    (1) Dramatic evidence that lycopene, a naturally occurring 
substance in tomato products already linked to cancer prevention, may 
even be effective in treating prostate cancer.
    (2) A new therapy for lung cancer is being developed that combines 
the promising approaches of gene therapy and anti-angiogenesis therapy, 
or cutting off the formation of blood vessels near cancerous tissues.
    (3) Additional good work on discovering how NSAIDs, common 
compounds such as aspirin, may work together with other agents as 
powerful new anti-cancer agents.
    How can we continue to decrease the death rate from cancer? How can 
we make sure the increasing number of patients who will get cancer will 
survive it? I work at the laboratory bench, as well as in the clinic, 
seeing patients on a daily basis, trying to get new therapies to 
patients as quickly as possible. I believe there are six key areas of 
investment that will enable us to rapidly and efficiently translate our 
laboratory bench research findings into effective cancer treatment and 
prevention. We need to get ideas from the bench to the bedside. We can 
do that with these investments and make a real difference. They include 
the initiatives listed below:
    (1) Increase the level of funding for investigator-initiated 
research. Our best ideas to cure or prevent cancer came from individual 
scientists working in the laboratory and with patients. Currently, less 
than a third of peer reviewed and approved research grant requests are 
funded. There are so many good research projects, which cannot be done 
because of a serious lack of funding. The NCI budget should be 
increased to enable funding of 45 percent of scientifically meritorious 
grant proposals.
    (2) Increase the number of NCI-designated Comprehensive Cancer 
Centers in the United States. This would improve the geographic 
distribution of expertise in cancer research and patient care and 
maximize patient access to the most up-to-date cancer treatment and 
prevention strategies.
    (3) Expand our clinical trial programs. Currently, only 2 percent 
of adult patients with cancer participate in clinical trials. It has 
been shown that patients participating in clinical trials have better 
survival rates than those who do not. And this is how we make our 
advances in human cancer. Having more patients on clinical trials means 
more patients will receive the most advanced treatment and prevention 
approaches to their particular cancers.
    (4) Attract, educate, and train more cancer researchers. We need 
continued replenishment of leaders to bring findings from the 
laboratory bench to the bedside. The terrible uncertainties about 
stable funding of cancer research efforts decrease our abilities to 
recruit and keep young investigators in the field of cancer research. 
They will be the ones caring for us and trying to prevent cancer in us 
in the future.
    (5) Double funding for cancer prevention, and establish ``centers 
of excellence'' to support a proactive national initiative in cancer 
prevention.
    (6) Enhance strategies and infrastructure to support public-private 
partnerships on cancer therapeutics.
    What is the investment for making sure we take advantage of these 
opportunities to head off an epidemic of deaths from cancer? We 
strongly recommend the implementation of a 5-year plan to achieve an 
annual investment level of $10 Billion per year for cancer research. 
Currently, our investment is $2.7 Billion per year. We propose that we 
begin doubling the current NCI budget in fiscal year 2000 and increase 
the budget by 20 percent per year for the next four years until we 
reach the $10 Billion level! Can this money help? You bet it can, 
because now we have the tools, the genetics, the understanding to make 
a difference in developing new treatment and prevention strategies. 
Further, an annual investment at the level of $10 Billion is an 
appropriate investment, considering the enormity of the cancer burden 
that we face in the future. We estimate that such an investment would 
reduce cancer deaths from 25-40 percent over a 20-year period, saving 
150,000 to 200,000 lives each year in the United States.
    The AACR fully endorses the Report from The March Research Task 
Force, which describes these recommendations in detail. This cogent 
report was circulated to all Members of Congress within the past few 
weeks and we recommend its immediate implementation.
    In closing, I would like to take this opportunity to mention one 
final item. Today is April 15th--tax day, a day when all of us in this 
country show our good faith to contribute to the greater good. There 
doesn't appear to be too many people who want to pay more taxes. There 
is however, an exception. In a survey reported in USA Today by Cindy 
Hall and Terry Mceemak, 87 percent of adults in the United States said 
that they would willingly pay more taxes for cancer research.
    Our citizens feel the burdens of cancer each year, they know it is 
increasing, and they want it to end. Unless we act with urgency now, at 
the current rate, the human and economic cost of cancer in the United 
States will become totally unmanageable within the next decade.
    Thank you for your attention. I would be glad to answer any 
questions you might have as you deliberate this important matter.
                                 ______
                                 
          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 is pleased to submit 
public witness testimony to support fiscal year 2000 appropriations for 
the National Institutes of Health (NIH). Cystic fibrosis is a fatal, 
genetic disorder that occurs in one out of every 3,900 births in the 
United States. Only a few decades ago, parents of children with CF 
could expect their sons and daughters to survive less than five years, 
and the struggle to survive even that long, involved tragic suffering. 
Research has led to a variety of treatment options for children born 
with CF, including antibiotics, nutritional support and a novel biotech 
drug to thin dangerously thick lung secretions.
    Medical researchers have made incredible advances in the treatment 
of individuals born with CF. As a result, children are now living into 
adulthood and the opportunities to cure this disease grow stronger 
every day. Several clinical trials are underway to evaluate the 
effectiveness of drug strategies that seek to correct the basic CF 
cellular defect, rather than treating symptoms alone. Correcting the 
cells, whether with gene therapy or with drugs that repair the protein 
product of the gene, should prevent the destructive cascade of damage 
this disease causes to multiple organ systems. In large measure, this 
progress can be attributed to the commitment of the members of this 
Subcommittee, and to your colleagues who preceded you. On behalf of the 
entire cystic fibrosis community, please accept our heartfelt gratitude 
and thanks for believing in the potential of our medical research 
enterprise. You have helped to bring the hopes and dreams of a cure for 
CF closer to a reality for these young men and women.
    The partnership between the NIH and the CF Foundation provides a 
base for leadership in this country that is unparalleled. This 
leadership plays a critical role in guiding the programs that will one 
day produce a cure for this deadly disease. Together, we have built an 
extensive pipeline of new scientific discoveries that will be 
translated into lifesaving treatments for thousands of individuals with 
CF. Much of this CF research has been made possible because of this 
Committee's continued support and vision to nurture and expand our 
nation's biomedical research.
    For fiscal year 2000, the CF Foundation urges continued commitment 
to double the budget of the NIH over five years. The first step this 
Committee took toward this objective in fiscal year 1999 was greatly 
appreciated by the research community as well as by patient advocates. 
The CF Foundation believes that the resources you have put in place to 
carry out CF medical research are a laudable and imperative national 
priority. In urging your consideration of this important request, we 
are joined by the entire medical research community represented by the 
Ad Hoc Group for Medical Research Funding. We call on the U.S. Congress 
to commit to a significant and sustained growth in funding and reach a 
doubling of the budget in the next five years.
    CF is a disease that requires a vigorous investment by all of the 
partners in our research enterprise. In addition to the NIH research, 
individuals with rare diseases like CF, need biotechnology companies to 
be an important partner in the effort to develop new therapies. 
However, the current economic climate in the biotechnology industry has 
made it increasingly difficult for the majority of biotech companies to 
invest in rare diseases. The cost of developing products for which 
there is a limited market (small patient numbers) often creates a 
barrier. Progress in CF research is threatened if we fail to create the 
appropriate incentives and opportunities to overcome this barrier.
    The Orphan Drug Act has been helpful in providing some financial 
incentives, but innovative approaches must be made by private 
foundations and the NIH to further encourage the development of novel 
therapies by our biotechnology industry. In 1998, the CF Foundation 
launched the Therapeutics Development Program (TDP)--the most extensive 
research initiative in its history. This program bridges the gap 
between the discoveries in the laboratory and vital new CF medications. 
Specifically, the initiative provides funds for two mechanisms. First, 
it supports a model clinical research center network of seven highly 
trained centers where drugs will be tested. And second, it offers 
matching funds to support research at selected biotechnology companies. 
This program is solely funded by the CF Foundation to fill a void that 
the current structure of public resources and industry investment had 
created.
    Researchers and clinicians at the Therapeutics Development Center 
network evaluate drugs through the latest techniques and comprehensive 
study design. The network was created to capitalize on the increasing 
number of discoveries being made about the basic defect in CF. By 
establishing specialized clinical centers, researchers can seize these 
opportunities to intervene in the disease process through new CF 
treatments. The clinical research will also build upon early phase 
trials already underway in CF gene therapy and protein-assist therapy, 
as well as studies to test anti-infective drugs.
    The Therapeutics Development Center Network now has four different 
drugs being evaluated, and in the ``pipeline.'' At each of the seven 
centers, state-of-the-art clinical research is being conducted at the 
fastest possible pace. The staff, recently trained by the coordinating 
center (at Children's Hospital and Regional Medical Center in Seattle) 
in the latest clinical research techniques, will carry out the first 
two of three phases of clinical investigation. Specifically, the seven 
Therapeutics Development Centers will focus on expediting the early 
phases of clinical trials that evaluate safety and dosing regimens for 
new drugs. The final phase, which assesses the drug's effectiveness in 
a large population of patients, will involve the CF Foundation's full 
network of 113 accredited care centers across the country.
    Mr. Chairman, the CF Foundation has created a unique program to 
address a critical gap in our research infrastructure. However, 
additional gaps exist. We encourage the NIH to also seek innovative 
ways to attract the biotechnology industry to conduct research that 
could have an impact on orphan diseases. The translation of new 
knowledge from the laboratory to CF patients requires that the NIH 
consider novel approaches to private-public collaboration for orphan 
diseases.
    We request your continued support for the full spectrum of 
research--basic, translational, and clinical--all sponsored by the 
National Center for Research Resources, the National Institute on 
Diabetes, Digestive and Kidney Diseases (NIDDK) and the National Heart, 
Lung and Blood Institute (NHLBI). The resource capacity of these 
institutes is of paramount importance to push the frontiers of CF 
research ahead. As you deliberate the allocations of resources for 
fiscal year 2000, we hope that you see the following as clear 
priorities to support.
    National Center for Research Resources (NCRR): We would like to 
highlight the outstanding support that the NCRR has provided to the 
field of CF research in the past, and most especially fiscal year 1999. 
The NCRR plays a pivotal, and often overlooked, role in the research 
community's ability to achieve its objectives. We would submit to the 
Committee that many research investigations are slowed or hampered by a 
lack of research resources. The NCRR has worked diligently to establish 
a pilot data monitoring center at a general clinical research center 
which is jointly funded by the CF Foundation through the Therapeutics 
Development Network Program. This data monitoring center expedites the 
collection, manipulation, and evaluation of data gathered across multi-
center trials on CF therapies. This initiative represents a tremendous 
collaboration and the Foundation is honored to work with the NCRR in 
providing support to this important endeavor. CF patients are heavily 
dependent upon the vast resources in academic institutions that the 
NCCR supports; we urge that the Committee strengthen the resource 
commitment to this important component of the NIH enterprise.
    One critical issue hampering evaluation of new and novel therapies 
for CF that we bring to the Committee's attention is the cost structure 
in the General Clinical Research Centers (GCRCs). The current cost 
structure of the GCRC's has two rates, one for NIH-sponsored research 
and a separate, and higher one, for industry-sponsored research. This 
system uniquely disadvantages small biotechnology companies from 
working on orphan diseases since they are unable to pay the same per 
patient rate in clinical investigations as well-established companies. 
We at the CF Foundation believe that the NIH and the NCRR should 
recognize the unique constraints of the biotechnology industry and 
create a more favorable environment for industry-sponsored clinical 
research through the GCRC mechanism. Adjusting the current cost 
structure for biotechnology companies to conduct clinical trials for 
orphan diseases through the GCRC program will greatly advantage drug 
development for diseases such as CF.
    National Institute of Diabetes, Digestive and Kidney Diseases: We 
ask that this Committee direct the NIDDK 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, we must nurture clinical research 
and clinical investigators. In fiscal year 1999, the CF gene therapy 
centers were re-competed by the NIDDK. The CF Foundation appreciates 
that many excellent applications for CF gene therapy centers were 
received by the NIDDK. CF is clearly on the cutting-edge of gene 
therapy research and the Institute should, within the incredible 
increase this Committee provided in fiscal year 1999, strongly support 
and expand its capacity in this area.
    In addition, it is important that the Institute support mechanisms 
for developing new therapies for CF patients. The Institute's 
investment in basic research over the years has provided scientists 
with great insights on how to treat the disease. Now these insights 
must be fully translated and evaluated through Institute-provided 
resources.
    Also, it is hoped that expanded support of the Small Business 
Innovative Research (SBIR) Grant Program, especially for orphan 
diseases like CF, will provide greater opportunities for small 
businesses to develop new therapies for CF patients. It is our 
recommendation that the NIH be encouraged to actively pursue and 
support collaborations with the private sector through the SBIR 
mechanism for orphan diseases.
    National Heart, Lung and Blood Institute: The CF Foundation was 
pleased to hear of the continued support of SCOR grants and program 
projects directed toward developing new therapies in CF. Once again, 
the CF Foundation would like to encourage the NHLBI to explore 
innovative ways to take the wealth of information that has evolved, as 
a result of the Institute supporting basic research, and to translate 
late it into clinical interventions for the disease. The SBIR program 
initiatives directed toward the development of new clinical approaches 
to CF would only enhance the opportunity for CF patients to receive 
lifesaving new therapies.
    Clinical Researchers: To effectively exploit our progress in the 
research laboratory and translate that progress to patients, a cadre of 
well-trained clinical investigators is of paramount importance. 
Additional initiatives in post-doctoral training, support for new and 
young investigators, programs to facilitate mentoring of young 
investigators and support for the clinical research infrastructure are 
pressing priorities. Given the current balance of funding, if these 
priorities are not vigorously addressed soon, we stand to lose the next 
generation of clinical scientists.
    Research Restrictions: The CF Foundation urges Congress to fully 
evaluate potential riders and subsequent actions to the Appropriations 
Bill which could be detrimental to the research environment. As an 
example, last year in the Omnibus Appropriations Bill, an amendment was 
included which required ``federal awarding agencies to ensure that all 
data produced under an award will be made available to the public 
through procedures established under the Freedom of Information 
(FOIA).'' This amendment has raised serious concern regarding protected 
health information as well as the capacity of our medical research 
infrastructure to respond to these types of inquiry.
    Although research results are provided to the funding agency 
through the structure of the progress report, the breadth of disclosure 
required by this amendment will have a dramatic impact on the increased 
cost of conducting research, and potentially slowing the research 
process. This fiscal year the CF Foundation is aware of the controversy 
surrounding stem cell research from both the scientific and ethical 
standpoints. We further understand that this issue is likely to be 
addressed through an amendment process in the fiscal year 2000 
Appropriations Bill instead of in a deliberative Committee process 
where full disclosure and debate would naturally occur. We urge the 
Committee to be vigilant in preventing passage of an appropriations 
bill that would circumvent major policy issues which require thoughtful 
consideration and deliberation in a public forum.
    The CF Foundation realizes the scope of 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. Therefore, the CF 
Foundation is actively working to support legislative initiatives that 
will augment the resources available to the Committee through its 
normal allocation.
    Thank you for consideration of this request. The CF Foundation 
looks forward to working with you in the coming months on the vital 
issue of NIH funding.
                                 ______
                                 
    Prepared Statement of the National Coalition for Cancer Research
    On behalf of the 23 organizations of the NCCR, please accept this 
testimony to the Committee record. NCCR greatly appreciates the 
commitment of this Subcommittee and the leadership of Chairman Specter 
and Senator Harkin to ensure adequate and sustained funding for NCI and 
NIH. The NCCR is comprised of 23 national research and lay advocacy 
organizations working to secure adequate federal funding for research 
to improve cancer prevention, detection, treatment, and survivorship. 
These 23 member organizations consist of 65,000 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; 90 cancer hospitals and cancer centers across the 
country; and more than 2 million volunteers.
    NCCR is thrilled that NIH and NCI were appropriated the largest 
increase ever for this fiscal year. In terms of funding for fiscal year 
2000, we understand the real funding constraints you are under as 
imposed by the recently passed Budget Resolution and the current budget 
caps. Our concern is that NCI and NIH be appropriated sufficient funds 
in order to support and to sustain the highest quality cancer research, 
academic research centers, translational research, and clinical trials 
and to exploit fully the many extraordinary research opportunities 
available, so that the National Cancer Program can save lives and make 
real headway in the war against cancer.
    Now is the time to focus federal resources on funding and finding a 
cure for cancer or our country will pay for it later--in dollars and in 
lives lost. The following statistics put the magnitude of the current 
cancer pandemic in perspective:
  --5 jumbo jets crashing every day for a year equals the 563,100 
        Americans who will die this year from cancer
  --1 out of every 2 American men and 1 out of every 3 American women 
        will develop cancer during his or her lifetime
  --1 out of every 4 deaths in the U.S. are caused by cancer
  --$107 billion dollars are spent on cancer health care costs annually
    There is no more time to wait.
    It is important that we are not misled about the problem of cancer 
in America. While cancer rates--the number of people per thousand in 
the population who develop cancer in a given year--have dipped slightly 
by 2.6 percent between 1991 and 1995, cancer incidence, the new cases 
of cancer reported each year, are expected to increase hugely over the 
next decades. As the Baby Boom Generation ages, the number of Americans 
over age 65 will double to 69.4 million in 30 years. Currently, 64 
percent of cancer occurs in patients over 65, the Medicare population. 
By 2010 cancer incidence is expected to increase 29 percent and 
mortality 25 percent with annual costs exceeding $200 billion. The 
Medicare program already faces serious problems but will be crippled if 
cancer prevention and treatment options do not improve significantly 
over the next thirty years. It is imperative, thus, to mount an 
aggressive cancer research front immediately.
    Americans across the country are demanding that the federal 
government increase its commitment to cancer research funding. Through 
the efforts of The March--Coming Together to Conquer Cancer--hundreds 
of thousands of adult and pediatric cancer patients, parents of 
children with cancer, oncology nurses, cancer researchers, medical 
professionals, and cancer research advocates gathered last September on 
the National Mall and in their state capitols to wage war on cancer and 
to call for substantial increases in federal funding for cancer 
research, because current federal funding for cancer research is 
grossly inadequate.
    This year's federal funding for cancer research represents an 
investment of only $10.75 per person--barely more than the price of one 
movie ticket and container of popcorn a year! We invest less than 2 
percent of the economic toil this disease inflicts. No wonder, then, 
that only 31 percent of approved cancer research projects receive 
funding, and cancer is the second leading cause of death for American 
men and women. I urge this Subcommittee to listen to your constituents, 
to take heed of the statistics, and to support the bipartisan plan, 
demonstrated in H. Res. 89 and S. Res. 19, to continue the course to 
double the budget of NIH in order to advance medical science and 
accelerate progress against diseases like cancer.
    As a nation, we must redouble our commitment to promoting cancer 
research and eradicating this disease. Increasing the federal 
commitment to cancer research is an investment that this nation can ill 
afford not to make. The United States already spends $107 billion 
annually in direct and indirect costs of cancer, and the costs rise 
each year. Yet we invest only 2 percent of these costs in research and 
development to improve prevention, detection, treatment, and 
survivorship. Most product-oriented industries would fare poorly if 
they spent only 2 percent on research and development. In fact, the 
Defense Department spends upwards of 15 percent of its budget on 
research and development. American businesses invest between 5-10 
percent in research and development; some biotechnology and 
pharmaceutical companies invest more than 15 percent in R&D. These 
figures are closer to what we should invest in cancer research when 
juxtaposed against the economic burden of disease. So, what do we do? 
We support and urge Members of Congress to support The March Research 
Task Force proposal to increase NCI's budget to $10 billion by doubling 
the budget for fiscal year 2000 and increasing it 20 percent each of 
the following four years. This new funding is absolutely necessary to 
research and to apply new knowledge for improved cancer treatment, 
detection, and prevention which could enable:
  --Accelerating basic and clinical research by funding at least 45 
        percent of approved cancer research grants
  --Accelerating cancer therapy development by creating public/private 
        consortiums
  --Accelerating the preclinical and clinical development of cancer 
        therapies
  --Improving methods of cancer detection and prevention and their 
        utilization
  --Implementing a national research and education initiative in 
        tobacco control
  --Developing chemo-preventive agents
  --Behavioral research to understand and manage cancer survivorship 
        and end of life issues
  --Creating public/private partnerships to engage the private sector 
        in conquering cancer
  --Developing a comprehensive, national clinical trials system for 
        cancer drugs
  --Researching why cancer occurs disproportionately in minorities and 
        the under-served
  --Training a cadre of clinical scientists in oncology
  --Improving current research facilities and building new ones
  --Creating more research jobs at medical schools, research 
        institutions, specialized cancer treatment centers, and 
        pharmaceutical and biotechnology companies.
    So many exciting developments are occurring in cancer research. We 
are gambling with our lives and our children's lives by not 
sufficiently or aggressively funding them to exploit the science that 
we have worked so hard to understand. For example, scientists are just 
beginning to understand the roles and possible manipulation of the 
tumor suppressor gene p53. Tumor suppressor genes act like the brakes 
in cell replication, by inducing programmed cell death. p53 is mutated 
in 55 percent of tumor types, so that cancer cells replicate out of 
control. Possible therapies include delivering a virus to target and 
destroy the mutated p53. Another approach is injecting a virus directly 
into the tumor site to attack and disarm it by inciting the body's 
normal immune response. p53 could also indicate which treatment options 
are the best for individual patients, because certain therapies will be 
more or less effective depending on whether the patient has mutated or 
normal p53.
    The enzyme telomerase is also an exciting part of cancer research. 
Excess telomerase is apparent in all major cancers. It rebuilds 
telomeres, which determine how many times a cell can divide. After each 
cell division, the tips of telomeras diminish until they are so small 
that the cell no longer divides. Excess telomerase prohibits this from 
occurring by constantly re-building telomeres. Research efforts are 
exploring how to manipulate telomerase levels and control cancer.
    In order to accelerate these possibilities for improved cancer 
treatment, more funding is required. Research opportunities are out-
pacing the available funds for research. The President's proposed 2.4 
percent increase in NCI funding and 2.1 percent increase in NIH funding 
would most certainly set back cancer research efforts. NCI estimates 
indicate that the success rate--the percentage of approved cancer 
research projects that are funded--would drop from 31 percent to 28 
percent. The Director of the National Cancer Institute, Dr. Richard 
Klausner, noted at the National Cancer Advisory Board meeting in 
February that it would take three years of budget increases of nearly 
10 percent per year to once again reach a success rate of 30 percent. 
That projection is very conservative. It assumes that NCI will have 
only a 4 percent increase in grant applications, even though last year 
NCI was deluged with a 23 percent increase in grant applications. 
Chairman Porter, our base of science knowledge is growing each day. In 
turn, this new knowledge is spurring questions regarding applications 
of new knowledge. It makes sense that funding for research should 
increase at a level commensurate with new opportunities, then, instead 
of decrease.
    Cancer research makes sense--and dollars, too. 85 percent of the 
nearly $3 billion appropriated to NCI, will fund extramural research 
across the country in nearly every state. Every state in the Union 
benefits in real dollars back home from our investment in cancer 
research. For example, in fiscal year 1997 researchers in Pennsylvania 
received $128 million, researchers in Iowa received $9 million, 
researchers in Missouri received $20 million, researchers in Texas 
received $102 million, researchers in South Carolina received $5 
million, and researchers in Washington state received $83 million. 
These research dollars also support universities, hospitals, and cancer 
centers. In 1987, the University of Pennsylvania received over $27 
million in NCI support, and Washington University received over $15 
million.
    Adequately funding the NIH is a sound business investment for the 
national economy. NIH-sponsored research currently translates into 
$17.9 billion in employee income, $44.6 billion in sales, and over 
726,000 jobs in the pharmaceutical, biotechnology, and medical fields.
    In addition to funding, quality research also depends on 
maintaining the integrity of top-notch academic health centers and 
research universities. 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.
    Progress depends in no small extent on ensuring 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 in our country of the ``brightest and best minds'' leaving 
biomedical sciences for careers that appear more challenging and a more 
important part of our nation's future. This trend must be reversed.
    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.
    Investigational therapy administered under the aegis of a fully 
approved clinical trial is often 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. Both patients and 
research suffer when health insurers will not reimburse for routine 
patient care costs in clinical trials. This is compromising our 
capacity to translate research from the laboratory bench to the 
bedside. The NCCR supports legislative efforts to ensure third-party 
payer's coverage of patient-care costs in clinical trials.
    We respectfully request that direct funds to cancer research to 
open the doors for researchers to find and make available for patients 
new methods for the prevention and treatment of cancer.
                                 ______
                                 
    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 
2000 appropriations for allergy, asthma and immunology programs 
supported by the National Institutes of Health (NIH). These programs 
are supported primarily in two of the NIH Institutes: the National 
Institute of Allergy and Infectious Diseases (NIAID) and the National 
Heart, Lung and Blood Institute (NHLBI). 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. The leadership has been unprecedented and we commend you for 
keeping the NIH a priority of your colleagues in Congress. 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 NIAID and the NHLBI.
    The JCAAI supports the Ad Hoc Group for Medical Research Funding 
proposal to double the budget for the NIH over the next five years. Our 
national research enterprise is poised to make significant strides if 
the necessary funds are available to pursue the scientific 
opportunities, preserve the integrity of the research infrastructure, 
and adequately support and mentor physician investigators as the health 
care marketplace dramatically alters.
                      asthma and allergic diseases
    Allergic diseases, including asthma, afflict twenty percent of 
Americans. The term allergic diseases describes a myriad of medical 
conditions such as asthma, allergic rhinitis, atopic dermatitis, food 
allergies and anaphylaxis. Asthma alone afflicts 14 million Americans, 
the prevalence is on the increase and the associated economic costs of 
this disease are quite significant.
    The NIAID is in the process of renewing the Asthma, Allergic and 
Immunologic Diseases Cooperative Research Centers. These centers 
provide an infrastructure and collaborative environment to study the 
complex problems associated with asthma, allergic and immunologic 
diseases. An important object of these research centers is to integrate 
basic and clinical research initiatives to improve the diagnosis, 
prevention, and treatment of these diseases. Further, these outreach 
centers seek to treat and prevent asthma or immunologic diseases in 
underserved populations.
    Allergic Diseases.--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.
    Allergic reactions can occur over a spectrum of severity from minor 
inconvenience to debilitating as with asthma and even potentially fatal 
in the case of reactions to drugs, venoms or foods. 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.
    Asthma.--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 the most 
common chronic disease in children, and 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). Recent research has identified that 
very early exposure to asthma-causing agents, in infancy or prior to 
birth, may determine a child's chance of developing asthma. Further, 
clinical and epidemiological data suggest that viral respiratory 
infections and exposure to allergens are the most important risk factor 
early in life that may lead to wheezing, prolonged alterations in 
airway function and chronic asthma.
    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, totaling $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).
    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 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. Through this 
initiative the NIAID continues to support and encourage research that 
may lead to more effective prophylactic and therapeutic approaches for 
controlling asthma and other respiratory diseases. This ongoing study 
has recruited children ages 4-12 years with asthma, and will test two 
interventions to assess their capacity to reduce the severity of asthma 
in children. The first intervention involves informing the primary care 
physician about data obtained in phone interviews regarding the child's 
asthma severity, to maximize the care that the physician is providing, 
and the second involves educating families about reducing exposure to 
indoor allergens and passive cigarette smoke.
                          research enterprise
    The JCAAI continues to be concerned about clinical research and 
urges the Committee to continue vigorous oversight in this regard. Over 
the past several years there have been numerous reports regarding the 
grave status of our clinical research enterprise. The JCAAI urges this 
Committee to ensure that the NIH has in place the following: a process 
for setting broad goals in clinical research; an approach to clinical 
research training which will maximize the entry of talent into the 
field of clinical research; and, provide resources for clinical 
investigators to maintain clinical, laboratory and patient care 
responsibilities.
                                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 15 percent increase for 
the NIH in fiscal year 2000 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 American Academy of Otolaryngology Head and 
                              Neck Surgery
    Good morning ladies and gentlemen, Chairman Specter and members of 
the subcommittee, I am Dr. Michael Maves, Executive vice President of 
the American Academy of Otolaryngology Head and Neck Surgery (AAO-HNS). 
I am here this morning on behalf of the more than 12,000 members urging 
your continued generous support for funding for the National Institutes 
of Health and the National Institute on Deafness and other 
Communication Disorders.
    As you may know, otolaryngologists or ENT physicians as we are more 
commonly known, are responsible for treating patients with disorders of 
the ears, nose, throat and related structures of the head and neck. I 
would like to begin by thanking you Mr. Chairman, and all the members 
of your subcommittee for your leadership in securing a 15 percent 
increase for the National Institutes of Health in the budget agreement 
passed by Congress last year. It is largely through the efforts of this 
subcommittee that our goal of doubling funding for the National 
Institutes of Health over the next five years will be realized.
    This morning, I would like to focus my remarks on the remarkable 
success to date of the National Institute on Deafness and Other 
Communication Disorders. As Members of Congress, each of you is 
singularly aware of the importance of communication; it is how you 
present yourselves and your beliefs to the world; how you listen to 
your constituents and debate legislation. We live in a society driven 
by communication and disorders of those processes present very real 
social and professional barriers. As Ruth Hubbard, a prominent American 
biologist observed, ``Without words to objectify and categorize our 
sensations and place them in relation to one another, we cannot evolve 
a tradition of what is real in the world.''
    Since its inception in 1988, NIDCD has made great progress toward 
realizing its unique mission of understanding the normal and disordered 
processes of hearing, balance, taste, smell, voice, speech, and 
language. The NIDCD has supported researchers who are devoting their 
careers to finding the causes, cure, and prevention of such disorders, 
which collectively affect more Americans than cancer, heart disease, 
orthopedic disorders, or visual problems. Communication disorders never 
killed anyone--but think of the lives it has touched!
    As in politics, much of the work that we do today will go toward 
benefiting our country's most important assets, our children. While a 
small part of the funding that this subcommittee provides to NIDCD each 
year goes to helping today's patients through clinical research, we are 
struggling to find new, more effective ways to treat the diseases that 
cause these disorders--and someday, to prevent them altogether. A 
growing public demand for evidence-based treatment options intensifies 
our conviction that more patient-oriented clinical research must be 
supported.
    Presently, however, there is a severe shortage of adequately 
trained clinical investigators within otolaryngology-head and neck 
surgery. This shortage of investigators inhibits clinical research 
productivity and slows the rate at which results available from the 
nation's thriving basic biomedical research efforts find application to 
the problems of patients served by otolaryngologists and our colleagues 
in other medical specialties and the communication sciences. Mr. 
Specter, I urge you and members of your Subcommittee to examine this 
issue seriously.
    As we enter into the new millennium, I often hear of all the 
concern over the potential problems of Y2k and how our information 
infrastructure will be ravaged by the turn of the century. Immense 
intellectual and financial resources have been brought to bear on 
preserving the communication systems we all enjoy and rely on today. 
While I am confident the Y2k problems will not be as serious as 
projected and our information highway will continue to thrive, I am 
fearful that many of our children with hearing or communication 
disorders will not realize their full human potential in the new 
millennium. We have the intellectual resources to address these 
problems--but adequate financial resources must be put into place to 
achieve our goals.
    At the beginning of the 20th century, our country created an 
industrial wave that allowed us to become one of the richest 
opportunistic countries in the world. The physical capabilities of the 
men and women that created the infrastructure to produce goods and 
services allowed us to be a world leader and maintain a healthy economy 
throughout the 20th century. Now, and into the 21st century, our 
economy will be heavily dependent upon an individual's ability to 
communicate. Aside from education, without the fundamental 
communication skills our country's workforce will be seriously hampered 
throughout the next one hundred years.
    Among the most exciting advances the NIDCD has made include 
understanding the genetic basis of hearing loss and finding ways to 
alleviate some of the causes. Research on methods of assessing hearing 
in an infant on the day she is born will make implementation of 
Congressman Jim Walsh's Newborn Infant Hearing Screening and 
Intervention bill possible. Collaborative efforts with other agencies 
result in greater safety and comfort for our astronauts in space, and 
bring digital technology to creating a new generation of hearing 
instruments. NIDCD-supported research has enriched our basic 
understanding of the human voice, and resulted in new surgical 
procedures to restore voice to those who once could speak only in a 
whisper.
    Although the NIDCD is among the youngest of NIH's institutes, it 
has made tremendous progress in understanding and improving 
communication for millions of people. I am here today to urge your 
support of another 15 percent increase to NIH, and an even larger 
increase to the NIDCD to expand support for patient-oriented clinical 
research by physician-scientists. We hope you will seriously consider 
increasing the budget of the NIDCD to levels appropriate for the 
magnitude and impact of communication disorders in our society. Thank 
you and I will be happy to answer any questions you may have.
                                 ______
                                 
   Prepared Statement of John M. Crawford, BDS, Ph.D., Professor of 
     Clinical Periodontics, Department of Periodontics, College of 
              Dentistry, University of Illinois at Chicago
                              introduction
    Mr. Chairman and members of the committee, I am Dr. John Crawford, 
Professor of Clinical Periodontics, Department of Periodontics, College 
of Dentistry, at the University of Illinois at Chicago and I represent 
the American Association for Dental Research (AADR). I would like to 
discuss our fiscal year 2000 budget recommendations for the National 
Institute of Dental and Craniofacial Research and the Agency for Health 
Care Policy and Research.
    The AADR has a membership of 5,300 scientists. Our objectives are 
to:
  --Promote research in the areas of dental and oral diseases;
  --Develop better methods of disease prevention and treatment;
  --Enhance communications and interaction among investigators to keep 
        the public and the scientific community informed.
  nidr becomes national institute of dental and craniofacial research
    After 50 years, NIDR has changed its name to the National Institute 
of Dental and Craniofacial Research. The new name more accurately 
reflects the broad research base supported by the Institute and its 
basic, translational, patient-oriented, and community-based studies. 
Although a single word ``craniofacial'' is the focus of the name 
change, it is a word of great impact. Craniofacial refers to the head, 
face, and neck, and NIDCR research in this area covers the 
developmental processes that form the human face and the plethora of 
diseases and disorders that involve dental, oral, and craniofacial 
tissues and structures.
    Mr. Chairman and members of the committee, I want to thank you for 
recognizing the expanded work of NIDCR and for initiating the name 
change.
    When people meet, the face is the focal point and its role in 
communicating through speech and non-verbal signals cannot be 
overemphasized. The craniofacial region is, of course, essential for 
other vital functions such as breathing, eating, speech and hearing.
    Birth defects of the human face are particularly devastating and 
have become an area of increased attention. Every hour a baby is born 
with a craniofacial birth defect. The habilitation of these infants and 
children costs almost $1 billion each year. Investigators began 
studying the most common craniofacial birth defect, cleft lip and cleft 
palate, in the early days of the institute. Today, several hundred 
genetic conditions are known to produce craniofacial syndromes, and 
scientists using the techniques of modern molecular biology have 
identified more than 100 associated regulatory and structural genes. 
Certain genes involved in craniofacial development have far-reaching 
effects; they also affect the formation of distant parts of the body, 
including the limbs and heart.
                               background
    The Dental Institute was born in 1948. The impetus for its creation 
was the revelation that oral infections were so prevalent and severe 
that the country's military preparedness was compromised. Congress was 
shocked that so little was known about the cause of oral diseases.
    Now a half a century later, Americans are realizing the benefits of 
the Federal investment in biomedical research. A revolution has 
occurred in understanding the human body and mind. Dental scientists 
have contributed significantly to that knowledge; initially by 
establishing that dental caries and periodontal diseases are infectious 
diseases and subsequently translating that knowledge into multiple 
means of prevention.
    Dental scientists have pursued fundamental questions about the form 
and function of the craniofacial, oral and dental tissues, their 
genetic origins, neurological controls, and the multiple strategies the 
body employs for their protection, nourishment, repair, and 
regeneration. Today, dental science research areas are clustered around 
genetic, behavioral and environmental factors that result in human 
diseases; infection and immunity; oral pharyngeal and laryngeal 
cancers; and biomimetics, tissue engineering and biomaterials to 
improve diagnostics and therapeutics.
    Over the last couple of decades--dental scientists have learned 
that: ``The Face is the Window to the Body.''
                         major accomplishments
    Over the past five decades, Americans have significantly benefited 
from the Federal investment in dental research. This public investment 
has resulted in dramatic improvements in dental practice, saved 
billions in dental care costs and created a generation of Americans 
with the best oral health in the world. Fifty years ago, most people 
assumed they would be toothless by age 45. The ``baby boomer'' 
generation will, however, enter old age with almost all of its teeth. 
This accomplishment will bring new problems to solve in maintaining 
these teeth in a healthy condition and free of decay because the 
elderly have weaker immune systems, lower salivary flow rates and 
altered diets. The following are a few examples of NIDCR-sponsored 
research:
    1. Craniofacial, Oral and Dental Tissues as Models.--While salivary 
glands, teeth, tongue and taste buds are unique organs, other 
craniofacial and oral tissues are models of tissues found elsewhere in 
the body. With that in mind, oral health investigators have begun to 
conduct basic studies of bone, cartilage, joints, nerves, muscles and 
glands, and the diseases affecting these tissues. Because pathological 
processes are so similar and whatever happens in the mouth can affect--
and be affected by--disease or disease treatments targeting other parts 
of the body, NIDCR has become a key player in research on many chronic 
and disabling systemic diseases.
    2. The Role of Saliva in Defense of the Body.--Dental scientists 
established that the fluid that bathes the oral cavity contains 
antibodies and a multitude of molecules that nurture, maintain and 
defend the oral tissues. The latest of these molecules to be discovered 
is SLPI (secretory leukocyte protease inhibitor), which makes it 
difficult for the AIDS virus to invade immune cells. Xerostomia (dry 
mouth) results from primary salivary gland disease, head and neck 
radiation or chemotherapy, as a side effect of hundreds of over-the-
counter and prescription drugs and is a particularly troublesome 
problem for the elderly. Without an adequate flow of saliva, people can 
experience rampant dental caries, oral abscesses and serious 
difficulties in speaking, chewing and swallowing.
    3. Infectious Diseases and Immunity.--It is not surprising that an 
Institute that early on established the bacterial nature of both dental 
and periodontal diseases has long supported microbiology research. 
These studies have grown to cover other oral pathogens such as viruses, 
bacteria, fungi, and parasites. Risk factors, modes of transmission and 
the variety of immune and non-immune defense mechanisms the body 
employs to combat infection are also part of the studies. We now 
understand that the interaction of oral flora with host tissues 
determines the state of oral health or infection and this knowledge has 
moved research away from studies of isolated bacteria to the study of 
microbial ecology. At the same time, analysis of the genomes of oral 
pathogens has enabled researchers to determine the key genes that 
determine a microbe's ability to adhere to and colonize oral tissues 
and cause disease. Among diseases studied are dental caries, 
periodontal diseases, oral candidiasis, herpes simplex virus and human 
papillomavirus infections. Also included is research on immunity, with 
special emphasis on mucosal immunity and non-immune salivary protective 
components. The oral manifestations of systemic infectious diseases 
such as hepatitis and HIV/AIDS and the development of new diagnostics 
and therapeutics are of special interest. The latter includes transfer 
to the salivary glands of genes whose products, released into the mouth 
or into the systemic circulation, are of therapeutic benefit.
    4. Neoplastic Diseases.--Oral, pharyngeal and laryngeal cancers are 
continuing to exact a toll of 42,000 new cases and 11,000 deaths each 
year. NIDCR has seized the opportunity stemming from findings in cancer 
genetics, the role of oncogenes and the discoveries of tumor-suppressor 
genes to support a major initiative to combat oral cancers. The numbers 
of these cancers are small compared with breast, colon and lung 
cancers, but oral cancer patients suffer disproportionately from severe 
pain, disfigurement and impairment in key functions, such as swallowing 
and speech. The disease itself and the treatment both contribute to 
suffering, and the cure rate for oral cancer has not improved in the 
last 30 years.
    5. Biomaterials, Biomimetics and Tissue Engineering.--We are in the 
midst of a revolution in our approach to repairing and regenerating the 
body's tissues. This revolution is based on a greater understanding of 
the molecules involved in maintaining tissue integrity and particularly 
how tissues remodel after injury. In Biomimetics and Tissue 
Engineering, the body's own molecules and processes are used to rebuild 
tissues, and thus avoid introducing metals, plastics or other foreign 
materials. Bioengineering is a cross-disciplinary and interdisciplinary 
field of research aimed at enhancing the development of natural and 
synthetic diagnostics, therapeutics and biomaterials for the repair, 
regeneration, restoration and reconstruction of craniofacial-oral-
dental molecules, cells, tissues and organs.
                     what nidcr hopes to accomplish
    Dentistry has indeed accomplished a lot. But we have much work to 
do to reduce the impact of oral and craniofacial problems on the 
quality of life of Americans. Investments in science have fueled the 
engine of technology that improves clinical dentistry and oral health. 
What should we anticipate from the next 50 years? How should we prepare 
for the 21st century? We must view our preparation in the context of 
major changes in demography, disease patterns, management of health 
care, international emigrations, the global economy and the revolutions 
in information technology. By the year 2020, the U.S. population will 
reach 300 million people, and one in every five Americans will be 65 
years of age or older.
    In this context, the mission of NIDCR continues--to reduce or 
eliminate inherited, infectious, neoplastic and chronic craniofacial 
oral dental diseases and disorders. We have formidable, yet attainable, 
unmet challenges before us.
    Investigators are also reporting an association between oral 
infectious pathogens and premature or low birth weight infants, 
pulmonary infections and cardiovascular diseases. Thus, we now have 
exciting preliminary evidence that the mouth not only reflects what is 
going on in the body but may influence diseases and abnormalities in 
distant organs like the heart, lungs and the uterus. Investment in 
further studies may lead to reduced numbers of heart attack victims and 
premature babies and to reducing the attendant costs of intensive in-
patient care for these patients.
                         budget recommendations
    Mr. Chairman, we support the proposal of the Ad Hoc Group for 
Medical Research Funding, which calls for a 15 percent increase in 
funding for the National Institutes of Health in fiscal year 2000; and 
specifically we respectfully request $276,518,000 for the National 
Institute of Dental and Craniofacial Research.
                 agency for health care policy research
    Research supported by the Agency for Health Care Policy and 
Research (AHCPR) will assist dental practitioners by providing the 
evidence base for selecting among alternative diagnostic and dental 
treatments. The integration of dental care with primary care and access 
to early detection of oral disease remain unresolved issues that are 
key to addressing the epidemic proportion of oral disease in low-income 
children.
    The AADR supports an increase in funding for the AHCPR to $225 
million, an amount that would allow the Agency to expand its portfolio 
of projects and trials to include those related to bringing the 
advances of biomedical research into cost-effective dental practice 
within the rapidly changing health care environment.
    Mr. Chairman, on behalf of the dental and craniofacial research 
community I want to thank you and the members of the Committee for your 
past support.
    This concludes my remarks. I will be happy to answer any questions 
you may have.
                                 ______
                                 
   Prepared Statement of the American Society of Pediatric Nephrology
    Mr. Chairman and members of the Subcommittee: My name is Aaron 
Friedman and I am president of the American Society of Pediatric 
Nephrology. In my other life I am Professor and Chairman of the 
Department of Pediatrics at the University of Wisconsin. In that 
capacity I see patients every day, all of whom are children or 
adolescents suffering from kidney diseases of one type or another.
    In the way of background, the American Society of Pediatric 
Nephrology, or ASPN, is a non-profit organization that was founded in 
1969 to serve as an advocate on behalf of the children and adolescents 
in this country who must endure the pain and suffering of kidney 
disease.
    Mr. Chairman, I want to take this opportunity to express to you and 
the Subcommittee our deepest gratitude for your leadership last year in 
calling upon the National Institute of Diabetes and Digestive and 
Kidney Diseases to develop a research agenda targeted on the needs of 
children and adolescents suffering from kidney diseases. In response to 
that charge, the NIDDK called together a number of experts in the field 
of pediatric nephrology to help craft a plan for conquering kidney 
diseases that afflict young people. And out of that effort came what is 
perhaps the most comprehensive blueprint ever developed in this field.
    Who will be the beneficiaries if we achieve our intended purpose? 
They are the infants, children and adolescents who comprise about 25 
percent of our population. They are the 1.2 million children under the 
age of seven who will develop urinary tract infections that may 
permanently damage kidney tissue. They are the 300,000 children and 
adolescents who will undergo evaluation for proteinuria, one of the 
early signs of progressive kidney disease. They are also the 76,000 
young people who will have to be treated for hypertension, a precursor 
of renal failure and cardiovascular disease, as well as those forms of 
kidney inflammation that disproportionately affect minorities. And they 
are the 100,000 who will be treated for diabetes, many of whom will 
ultimately suffer renal failure and end up on dialysis.
    While these young people and their families are our primary 
concern, it is important to recognize that their suffering does not end 
when they turn 21. Whatever progress we achieve in curing or treating 
the young means longer, more productive lives when they reach 
adulthood. Conversely, whatever we fail to do for these young people 
results in a lifetime of more extensive and more expensive treatment 
throughout their adult lives. They will grow up to be among the 300,000 
Americans with end-stage kidney disease who require dialysis or a 
transplant to survive.
    But finding cures and effective treatments for kidney disease is 
more than good social policy. It is sound economic policy as well.
    Over 90 percent of patients with end-stage renal disease, and 
patients receiving kidney transplants are covered by Medicare. 
Together, the two represent the single largest disease expenditure in 
the Medicare program. For example, over the four-year period 1991 
through 1994, Medicare paid $25.6 billion in claims for end-stage renal 
disease patients.
    Why is it so important to make the distinction between pediatric 
and adult kidney disease? Because when chronic kidney failure occurs in 
young people, normal growth and development are impaired. Scientists 
also believe that chronic kidney failure has a profound effect on the 
developing brain, often causing learning disabilities and mental 
retardation.
    To address these unique circumstances, pediatric nephrologists are 
specially trained and qualified to manage the renal diseases that 
surface in this age group. We have special expertise in the physical 
and psychological growth and development, pediatric drug dosages, 
nutritional requirements, and dialysis and transplantation needs of 
these young people. Because of the ages of our patients, our course of 
care often spans 20 years, compared to three years for adult patients. 
We are uniquely qualified to manage the coordinated, multi-disciplinary 
approach that is required to meet the care and treatment needs of young 
people. And in contrast to other nephrologists, the vast majority of us 
train and work at academic health centers and children's hospitals--the 
places families turn to when their children suffer from chronic kidney 
disease.
    Mr. Chairman, the pediatric nephrology program at NIDDK is the 
central focus for research in this field. This is augmented by NIAID's 
work in basic immunology and organ transplantation.
                            recommendations
    Mr. Chairman, we support the recommendations of the Ad Ho Group for 
Medical Research Funding, which calls for an overall $2 billion 
increase in funding for NIH, as well as those of the Council of Kidney 
Societies. More specifically, it is important that NIH continue to 
capitalize on both basic and clinical research opportunities that are 
of highest relevance to the pediatric kidney disease population. To 
that end, we respectfully recommend that the Subcommittee:
  --urge NIDDK to focus additional resources on research into the 
        causes and treatment of chronic kidney disease in children;
  --encourage research that recognizes the unique, long-term needs of 
        children afflicted with kidney diseases that may injure the 
        kidney in childhood but eventually lead to devastating illness 
        in adulthood, such as diabetes and hypertension, for example; 
        and
  --emphasize the need to expand the number of individuals specially 
        trained to manage the care and treatment of children and 
        adolescents with kidney disease.
    Again, Mr. Chairman, we want to thank you for the leadership the 
Subcommittee demonstrated last year. I would be happy to answer any 
questions you may have.
                                 ______
                                 
           Prepared Statement of the Alzheimer's Association
    Mr. Chairman and members of the Subcommittee: My name is Maureen 
Reagan and I am pleased to have the opportunity to submit testimony on 
behalf of my family and the millions of families like mine across 
America who make up the Alzheimer's Association.
    In the way of background, the Alzheimer's Association is the 
nation's largest voluntary health organization devoted to this disease. 
It is comprised of over 200 chapters and more than 35,000 volunteers 
working throughout the U.S. to assist families with respite services, 
information and referral and caregiver training. Through the Ronald and 
Nancy Reagan Institute, the Association is making the largest ever 
private investment in Alzheimer's research--more than $16 million this 
year alone.
    In political circles, Ronald Reagan was always viewed as someone 
with vision; someone who had the uncanny ability to see, in an 
unfiltered way, where we as a nation are and where we ought to be. More 
than fifteen years ago--on September 30, 1983--he issued a presidential 
proclamation that for the first time drew national attention to 
Alzheimer's disease. He was moved to do this, in large part, because 
this relatively unknown disease had stricken four million people; yet 
most Americans had never heard of it. In that proclamation he wrote 
that, ``The emotional, financial and social consequences of Alzheimer's 
disease are so devastating that it deserves special attention.'' As a 
testament to his vision, he went on to state that, ``research is the 
only hope for victims and families.''
    If he were here today, Mr. Chairman, I know that my father would 
want to commend you and this subcommittee for the investment you have 
made in research over the years. Because of that investment scientists 
have uncovered the basic mechanisms of Alzheimer's disease and the risk 
factors associated with age, family history and genetics. They have 
identified four different genes associated with the disease, as well as 
more effective techniques for diagnosing it. And the FDA has approved 
two drugs for treating individuals in the earlier stages of 
Alzheimer's.
    Those advances offer us hope, Mr. Chairman, but not a reprieve. 
Because whether it afflicts a neighbor who quietly fades behind the 
upstairs curtains, a relative who no longer comes to visit during the 
holidays, or a former President, the effects of Alzheimer's disease are 
drawing closer by the day.
    Unfortunately, this problem is not going to heal itself anytime 
soon. Nor will it age itself away. From now until well into the 
millenium, millions of baby boomers will shoulder their way into the 
age of highest risk. Right now, another 400,000 people fall victim to 
Alzheimer's every year. And unless we find a way to stop it, the four 
million Americans who now suffer for Alzheimer's disease will grow to 
14 million within the next few decades.
    There is no way to measure the human costs. But we do know that 
Alzheimer's disease is draining well over $100 billion a year, mostly 
from families like ours who care for Alzheimer's patients at home. We 
know that the lifetime cost of caring for its victims through the 
prolonged agony of Alzheimer's disease amounts to $1.75 trillion.
    To put the problem in a more immediate context, we know that 
Medicare is spending 70 percent more to care for beneficiaries who have 
Alzheimer's disease than for those who do not. Absent those higher 
costs, your job of keeping Medicare solvent would be a lot easier.
    Last year, this subcommittee took the bold first step of launching 
a prevention initiative that puts us on the cutting edge of science. 
According to researchers, there may likely be ways to prevent 
Alzheimer's before it takes hold, or to slow its progression enough to 
keep it from destroying so many Americans in the prime of their lives. 
And what makes this initiative even more exciting is that we may be 
able to achieve our goal without developing costly new drugs.
    As you know, scientists have found preliminary evidence that 
readily available treatments like estrogen, vitamin E and anti-
inflammatory drugs like ibuprofen may help slow or prevent Alzheimer's 
disease. This prevention initiative will enable researchers to launch 
large-scale longitudinal studies of potential treatments, to find those 
that will delay or prevent Alzheimer's. As a result of your actions 
last year, in fact, the National Institute on Aging last month launched 
the first large-scale clinical aimed at preventing Alzheimer's. This 
particular trial, which is being supported with both public and private 
funds, is targeted on individuals with mild cognitive impairment. It 
will test the comparative effects of vitamin E and a drug approved for 
another use, against a placebo.

                             recommendation
    Mr. Chairman, this subcommittee made a down-payment on a prevention 
initiative by providing an additional $50 million for Alzheimer's 
research last year. It is vitally important that the effort be 
sustained. Specifically, we urge you to increase Alzheimer's research 
by $100 million in fiscal year 2000. These funds would be focused on:
  --additional clinical trials of potential treatments;
  --discovering biological markers and reliable tests that would allow 
        for earlier detection, so that treatment can begin soon enough 
        to make a difference;
  --development of laboratory models to learn how the disease 
        progresses, and test promising therapies without risk to 
        humans;
  --testing new methods of treatment and care to improve the quality of 
        life, prevent disability, and develop systems of care that 
        families can afford; and
  --better define the epidemiology of Alzheimer's in populations 
        defined by gender, race and cultural background.
    In 1986, Mr. Chairman, President Reagan signed legislation creating 
the federal Advisory Panel on Alzheimer's Disease. After careful study, 
that panel urged Congress to appropriate $500 million for Alzheimer's 
research. The $100 million we have requested would fulfill that goal. 
More importantly, it will help prevent us from losing yet another 
generation of Americans to the ravages of Alzheimer's disease. Time is 
running out.
                                 ______
                                 
   Prepared Statement of the American Academy of Orthopaedic Surgeons
    Mr. Chairman and Members of the Committee: The American Academy of 
Orthopaedic Surgeons is pleased to have the opportunity to submit 
testimony in support of increased and sustained funding for the 
National Institutes of Health, in particular the National Institute of 
Arthritis and Musculoskeletal and Skin Diseases.
    The Academy, an educational organization serving over 16,000 
members, is committed to increasing the public's awareness of 
musculoskeletal conditions, with an emphasis on preventive measures. 
Its public education programs have addressed such issues as the 
importance of safety belts, prevention of playground injuries, hip 
fractures, back pain, recreation programs for the physically disabled, 
and the critical nature of musculoskeletal research.
    Over the past year, the Academy has joined with medical 
organizations from around the world to launch a Decade of the Bone and 
Joint, from 2000-2010, for the purpose of raising awareness of the 
enormous suffering and cost to society of musculoskeletal conditions, 
and to encourage research and development throughout the world. The 
project is picking up momentum and the Academy is hopeful that 
President Clinton will soon sign a proclamation officially declaring 
the United States as a major player in the ``Decade of the Bone and 
Joint.'' The Academy also invites the support and participation of this 
committee. The endorsement of the United States will enhance awareness 
of the wide array of acute and chronic diseases and injuries that 
affect the musculoskeletal system, and add momentum to the national and 
international cooperation necessary to address these challenging, 
burdensome and costly disorders.
    The attention directed to this issue is very timely. As the 
nation's large population of baby boomers continues to age, countless 
millions will suffer from a myriad of musculoskeletal conditions. These 
conditions are omnipresent--striking the young and old around the 
world. Young people suffer from skeletal deformities, muscular 
disorders and other developmental abnormalities that persist into 
adulthood, perpetuating impaired quality of life. At older ages 
degenerative skeletal diseases, including osteoarthritis and 
osteoporosis predominate.
    Musculoskeletal conditions are among the most frequently occurring 
chronic conditions affecting the U.S. population. They have a 
substantial impact on quality of life, use of health care resources, 
and the nation's economy. They are a leading cause of work-related 
disability among men and women 16-72 years of age, and are the leading 
cause of disability among Americans over 65. For example:
    Osteoarthritis ranks as the second most common diagnosis, after 
chronic heart disease, leading to Social Security disability payments 
due to long-term absence from work. Osteoarthritis is a slowly 
progressive condition that commonly affects the knees and the hips of 
over 20 million Americans. It primarily affects cartilage, which is the 
tissue that cushions the ends of bones within the joint. Osteoarthritis 
occurs when the cartilage begins to fray, wear and deteriorate. In 
extreme cases there is complete destruction of the cartilage, leaving 
bone grinding against bone. It causes joint pain, reduced joint motion, 
and loss of function. Unfortunately, the causes of osteoarthritis are 
not yet fully understood and opportunities for more effective treatment 
remain unrealized.
    Research is urgently needed in the following areas:
  --Research on the determinants of the progression or natural history 
        of osteoarthritis, relating both to the heterogeneity and the 
        slow, often relentless, evolution of this condition.
  --Validation of new technologies being used to assess hip and knee 
        osteoarthritis--such as advanced imaging techniques, 
        arthroscopic examination of joints, and biochemical markers of 
        disease processes.
  --Examination of new interventions, many of which may have the 
        ability to alter the rate of progression of this condition. In 
        addition, determining the most appropriate treatment at a 
        specific stage of this disease process needs to be a key area 
        of inquiry.
    Surgical replacement of joints has revolutionized the treatment of 
crippling osteoarthritis. Over 500,000 total joint replacements were 
performed in the United States in 1997, allowing patients to return to 
more normal lifestyles. However, because loosening and wear are factors 
that affect the durability of implants and their fixation, further 
exploration of this frequent complication is needed. Biochemical 
studies of implant wear particles have provided insights into the 
causes of implant loosening and offer the promise of a pharmacologic 
cure. Pharmacologic agents, in combination with efforts at reducing the 
generation of wear debris, may lead to novel therapeutic strategies to 
prevent implant loosening. This could have a profound effect on the 
longevity of these implants, with a marked reduction in the need for 
revisions and the suffering that accompanies this deterioration.
    Effective treatment of patients suffering from musculoskeletal 
diseases and injuries increases their capacity for work, ability to 
attend school, leisure activities and, perhaps most important, improves 
the quality of their lives. Examples of effective musculoskeletal 
treatments include joint replacements, as mentioned above, secure 
stabilization of fractures and methods to enhance the speed and quality 
of bone repair, correction of foot, hip and spine deformities in 
children, and significant improvement in the treatment of bone tumors 
and rehabilitation following surgery. Despite these successes, acute 
and chronic musculoskeletal disorders still affect large numbers of 
people.
    To improve prevention of injuries and diseases of the 
musculoskeletal system and care of patients with these problems, 
musculoskeletal research must be strengthened and expanded.
    Scientists stand poised on the border of a new frontier--tissue 
engineering. Tissue engineering has the potential to solve many 
currently perplexing musculoskeletal problems. It appears to be only a 
matter of time before orthopaedic surgeons can fill areas of bone loss 
and cartilage deficits, even grow actual bone from scratch, simply by 
providing the right potion of cells, growth factors and matrices.
    Tissue engineering is the manipulation of proteins, cells and other 
biomaterials to facilitate the regeneration of musculoskeletal tissue. 
This approach is in various stages of development for bone, meniscus, 
articular cartilage, ligaments and tendons. For articular cartilage, 
regenerative material is in clinical use, having been approved by the 
Food and Drug Administration. For other tissues, clinical trials are 
now underway.
    Tissue engineering is a hot topic throughout medicine, but lends 
itself particularly well to the musculoskeletal system. About 500,000 
procedures are done annually in the U.S. to address deficits in 
articular cartilage. Reliable methods to regenerate joints, if 
available, would benefit millions of Americans each year. Considerable 
progress has been made, but additional efforts are necessary to bring 
these research initiatives to fruition and available to those in need.
    Mr. Chairman, crippling musculoskeletal diseases can deprive our 
children of their normal development and can leave the aging population 
disabled and dependent on society. A sustained investment in 
musculoskeletal research funding can really make a difference in our 
quality of life now and in the future through the development of 
treatment approaches necessary to cure or alleviate the ravages of 
musculoskeletal diseases.
    Twenty years from now, there will be 10,000,000 more people over 
the age of 65 than people between the ages of 25 and 50, and by 2030, 
2.7 million people will be over 85 years old. That is why in the near 
future, there will be an even greater need for new technologies to 
manage acute and chronic health problems. We cannot afford to not 
invest in our future health. The savings in reduced disability 
payments, alone, could potentially offset the investment.
    The AAOS, therefore, urges the Committee to provide $354 million in 
fiscal year 2000 for the National Institute of Arthritis and 
Musculoskeletal and Skin Diseases. We also support the proposal of the 
Ad Hoc Group for Medical Research Funding, which calls for a 15 percent 
increase in the fiscal year 2000 budget for the National Institutes of 
Health.
    Thank you, Mr. Chairman, for the opportunity to present the 
Academy's concerns regarding the need for additional funding to support 
research being conducted at the National Institute of Arthritis and 
Musculoskeletal and Skin Diseases.
                                 ______
                                 
           Prepared Statement of the Genome Action Coalition
    Mr. Chairman and Members of the Subcommittee: Please permit me to 
thank you for the opportunity to present my views to the subcommittee. 
My name is Dr. Kay Redfield Jamison. I am a Professor of Psychiatry at 
the Johns Hopkins University School of Medicine. I am presenting this 
testimony to you today in my capacity as the Chairperson of the 
Steering Committee of The Genome Action Coalition (TGAC).
    The Genome Action Coalition was created in 1995 by less than a 
dozen patient groups and pharmaceutical and biotechnology companies. 
Today, it is comprised of about 135 members. In addition to the patient 
groups and the corporations, it also counts among its membership most 
of the professional organizations in the field of genetics, a variety 
of university research centers and physician organizations, and others.
    The fundamental mission of the Coalition is to seek to assure the 
existence of a political environment within which genomic and genetic 
research can continue to flourish at all levels.
    On behalf of the Coalition, Mr. Chairman, I would like to thank you 
for this opportunity. The basic message that we are bringing to you 
today is to encourage the subcommittee to continue its strong support 
for the National Human Genome Research Institute (NHGRI) to the maximum 
extent possible, when you are compiling the Labor-HHS appropriations 
bill for fiscal year 2000.
    While we fully understand that your actions must be consistent with 
sound management and proportional to the increases supplied to the rest 
of the NIH, we believe that there is a compelling case to be made to 
place a very high priority on the Human Genome Project.
    Mr. Chairman, there are a thousand cliches that I could throw at 
this subcommittee concerning the promise that is embodied within the 
Human Genome Project. I know that you have heard them all before. 
Statements about being ``at the dawn of a new age,'' or ``standing at 
the precipice.'' And, of course, there is always something to say about 
the millennium. But, simply put, this is a time like no other in the 
history of medical research.
    The NHGRI, working with the Department of Energy, private industry, 
and universities, is moving toward the completion of the core mission 
of the project--sequencing all three billion base pairs that are 
contained in the human genome. This will present medical science with 
an unprecedented opportunity. It is an opportunity to move the practice 
of health care into an entirely new sphere. The era of molecular 
medicine that the completion of this project will presage will result 
in advances that we can barely imagine today.
    Mr. Chairman, I am wearing a number of hats before you today. As I 
said at the outset of my remarks, I am a Professor at Hopkins. I am a 
researcher and scientist. I am also an advocate for persons, like 
myself, with manic-depressive illness. And, I work closely with the 
pharmaceutical and biotechnology industries in a number of capacities. 
All of those are components of The Genome Action Coalition.
    One of the strengths of our Coalition is that we work together to 
address our common interests, choosing to focus on what unites us 
rather than to dwell on what divides us. And one of the interests that 
we have in common is our unqualified support for fully funding the 
Human Genome Project to a level that will enable it to complete its 
core mission as quickly as possible.
    Last year, Mr. Chairman, I believe that many of us in the patient 
community, and many of our friends in industry, did not do a very a 
good job of expressing our support for genomic research to you and your 
colleagues. Many of those who testified spoke only about their 
immediate interests in other institutes and not about this critical 
project. Industry was largely silent.
    As a result, a serious effort was made in the Senate to reduce 
funding for this project. Fortunately, with the assistance of this 
subcommittee, we were able to reverse that process. We brought three 
Nobel Laureates to Washington and they met with you and other leaders 
of the Senate committee. And we are very grateful to you for the 
support you gave us.
    Mr. Chairman, there is barely a disease, a disorder, or a condition 
that will not be affected by the Human Genome Project. I know that you 
have seen a slide that Dr. Francis Collins, the NHGRI Director, uses. 
The slide has three pie charts, each one demonstrating the genetic 
component of a different condition.
    The first might be cystic fibrosis and the chart shows mostly 
genetic cause with a very small environmental component. The second is 
cancer and there the split between genetics and environment is more 
even. The third pie chart is AIDS and there the primary causative 
factor is environment with a smaller genetic component.
    The point of this slide, of course, is to visually represent that 
virtually every disorder, with the possible exception of certain 
traumas, has a genetic component. Big or small, it is there and it is a 
factor. As a result of that reality, virtually every disorder will 
eventually be diagnosed differently, treated differently, prevented 
differently, and cured differently. This will be the end result of the 
research that is being undertaken.
    All of us in the patient community have immediate concerns and 
research interests. We want to Child Health, or Heart, Lung and Blood, 
or Mental Health fully funded because they are doing the research that 
could have a significant impact today or tomorrow. And I can assure you 
that we all support and are involved in the effort by this subcommittee 
and others to double the NIH budget within a five-year period beginning 
in current fiscal year.
    But, I can also assure this committee that the patient community 
fully understands that the incredible research being conducted at the 
NHGRI is building the infrastructure that will lead to the long term 
solutions for all of the diseases and disorders that concern us. There 
is simply no way that this project can be left behind--unless America 
wants to relinquish its leadership in biomedical research, increase our 
trade deficit and retard the progress that we have made in helping our 
citizens to live healthier and more productive lives.
    That is why there is The Genome Action Coalition and that is why 
more than 130 diverse groups and companies belong to it.
    Mr. Chairman, in the past year or two, some in the government and 
elsewhere have come under a misunderstanding that there is a substitute 
for completing the international Human Genome Project. Some see a kind 
of scientific ``free lunch'' that will enable the government to avoid 
spending the money needed to bring this project to its goal of 
sequencing the entire human genome.
    Let me be perfectly clear. The private initiatives that have been 
undertaken into genome research are vitally important contributions to 
the science. As a scientist and researcher, I am excited about the 
potential that those plans hold for the treatment of patients. While 
the methods may be unproven, they are creative and exciting. The simple 
fact is that every scientific and medical technique in use today was, 
at one time, unproven.
    But, it is critically important to remember that the private plans 
and the public international plan are different projects done for 
different purposes. The sequence funded by the NHGRI is checked five 
times and guaranteed accurate at least to a level of one error in 
10,000 base pairs (the actual experience to date has been more like one 
error in 1,000,000 base pairs). In addition, the sequence that is 
determined through public funding is made available on the World Wide 
Web within 24 hours of completion.
    The fact that there are private plans developing their own version 
of the genome, focused clearly on the areas of the greatest potential 
commercial benefit, is very important. The Federal government cannot, 
and should not, be involved in drug development. The private plans will 
make a significant contribution to our ability to develop the next 
generation of drugs. But, that being said, having the private plans out 
there actually makes the public plan more important, not less.
    Mr. Chairman, as I indicated earlier, the members of TGAC are 
diverse. Many are opinionated. Some are passionate about issues. We may 
disagree about where to draw the line on patient confidentiality or 
intellectual property. But, the sequencing of the human genome is so 
important, it transcends all of those differences.
    This subcommittee is asked to do nothing less than to assure the 
future progress of biomedical research into the next century. You have 
an awesome responsibility, one that you have exercised in the past with 
great foresight, understanding, compassion and talent. As you work 
toward our shared goal of doubling the NIH budget in five years, on 
behalf of The Genome Action Coalition I would respectfully request that 
the funding for the National Human Genome Research Institute be 
increased by an amount that is certainly no smaller than that of the 
NIH as a whole.
    As always, Mr. Chairman, The Genome Action Coalition and its many 
members look forward to working with the subcommittee to achieve that 
level of success again.
    Thank you for the opportunity to present this statement to you.
                                 ______
                                 
          Prepared Statement of the Cooley's Anemia Foundation
    Good afternoon, Mr. Chairman and members of the Committee: It is a 
privilege and an honor to have the opportunity to address the Committee 
this year on behalf of the Cooley's Anemia Foundation. I am accompanied 
by my son Michael, who is now seven years old and is a Cooley's anemia 
patient.
    Mr. Chairman, Cooley's anemia is in some ways one of the great 
success stories of medical science. Twenty years ago, a child born with 
this disease had a life expectancy that lasted into his or her mid-
teens to early twenties. Today, many Cooley's anemia patients are 
living into their mid-thirties. That is a source of pride for our 
community and it is a tribute to the men and women of science who have 
dedicated their lives to helping these patients.
    But with all the progress that has been made, it is important to 
note that Cooley's anemia remains a devastating and difficult fatal 
disease. It involves a treatment regimen that is very difficult to 
maintain. And, it causes a myriad of physical and emotional problems 
that only get more complex as the patient population ages.
    Cooley's anemia is a genetic blood disease that results in 
inadequate production of hemoglobin, the oxygen carrying, red cells of 
the blood. This causes a severe anemia that requires frequent blood 
transfusions throughout a patient's life. But, getting 30-35 
transfusions per year is not the most difficult part of the treatment. 
It is what those transfusions lead to that is so difficult.
    The body has no natural way to rid itself of excess iron that 
results from transfusions. If left untreated, the iron will accumulate 
in vital organs, particularly the liver and the heart, and will become 
toxic. The very treatment that these patients need to live will slowly 
take their lives. It is a terrible irony.
    To deal with this problem, iron must be removed and we have a 
wonderful drug to do that. But, that drug is not like a couple of 
aspirin you or I take when we have a headache. This drug, known as an 
iron chelator, must be infused for 10-12 hours per day, every day. It 
is pumped through a needle inserted under the skin or directly into a 
vein.
    When patients are young, like Michael, compliance can be difficult 
and painful--for both the child and the parents. Michael is a good boy 
and he does what his parents tell him. But some day, he will be a 
teenager and going to a party, or sleeping over a friend's house, or 
going to a late movie will seem a lot more important than lying down, 
with that needle stuck in him pumping medicine.
    When compliance decreases, medical complications increase. For this 
reason, it is clear that Cooley's anemia patients need to have an iron 
chelation drug that can be taken orally, or injected once a day like 
insulin, or as a nasal inhalant, or in some form other than a 10-12 
hour daily infusion. And, to develop such a drug will take time, money 
and a little bit of luck.
    Mr. Chairman, we believe that people make their own luck. We have 
come to this Committee in the past to request your support for the 
development of a Thalassemia Clinical Research Network. This Network 
would be the focal point for Cooley's anemia research. It is a concept 
that has been used in other diseases; it is an idea that can work for 
our patients. Several different special emphasis panels have strongly 
endorsed this approach over the last couple years.
    The concept makes sense for a number of reasons. First, such a 
Network would allow for the pooling of patients, since there is not a 
research or treatment center in the country that has a sufficient 
number of patients to do a valid clinical trial by itself. Secondly, 
the Network would ensure that every clinical study would use common 
protocols and procedures, increasing the value of completed research 
and creating greater confidence in the results.
    Third, a Network would save money. NIH would not have to conduct 
individual grant or contract solicitations or competitions nor would it 
have to hire multiple peer review consultants. They could simply do it 
once for the entire Network. Finally and most importantly, patients 
would have access to new therapies sooner because the peer reviewed 
centers would be able to begin clinical studies without delay when new 
treatments became available.
    Mr. Chairman, I am delighted to report to you this year that the 
National Heart, Lung and Blood Institute (NHLBI) has now issued a 
Request for Applications (RFA) to create the Thalassemia Clinical 
Research Network that we have sought for so long. At this point, I 
would like to single out the person most responsible for the creation 
of this network.
    Dr. Claude Lenfant has gone above and beyond the call of duty in 
working with the Cooley's Anemia Foundation and with our Medical 
Advisory Board to work out the almost limitless number of issues that 
arise when developing a plan like this. Dr. Lenfant actually took the 
time to fly to Boston to meet with our doctors to assure that all of 
the details are in order. His support for this effort will be 
absolutely key in making it work and we are very grateful to him for 
his perseverance and commitment.
    Finally, Mr. Chairman, I would like to thank you for your strong 
support. For many years, you and your subcommittee have been a 
proponent of the research we seek. You have allowed your Committee 
Reports to stress the importance of progress in this disease. Your 
support has represented a turning point in the development of this 
network and we are thankful for your concern and compassion.
    The Network we have sought, of course, is only an infrastructure. 
It would be meaningless without high quality research to be conducted 
within its framework. There is certainly no shortage of research 
available to be done.
    There are two issues related to the iron problems that I discussed 
above that need to be addressed.
    First, science must find better and easier ways to remove iron from 
the body. As I indicated, this is the biggest impediment to successful 
treatment of our patients.
    Second, and also very important, is that we must find better ways 
to measure the amount of iron stored in the body, particularly in the 
liver and heart. Liver biopsies are painful, expensive and require 
sophisticated training and facilities to accomplish. There is no means 
available to measure iron in the heart. Sound, noninvasive techniques 
such as MRI or magnetic susceptometry need to be evaluated and put into 
use if found to be effective.
    Steps related to iron are already being taken. Earlier this spring, 
NIDDK, working in collaboration with NHLBI, issued a Request for 
Applications (RFA) for both basic and clinical research in areas 
related to pathogenesis and new therapies for iron overload. The 
purpose of this initiative is to encourage research aimed at developing 
a better understanding of the biological consequences of iron overload 
and improving methods of therapy. A major aspect of this initiative is 
to elucidate the control of iron transport and metabolism, in order to 
facilitate the development of improved means of removing excess iron.
    The lengthening lifespans of Cooley's anemia patients is creating 
its own set of issues that cry out for additional research. Now that 
patients are living into their mid-thirties, issues such as stunted or 
delayed growth, delayed sexual development or infertility, hormonal 
levels, osteoporosis and diabetes are all coming to our attention. As a 
start, detailed studies of the natural history of these disorders are 
needed. This, in turn, could lead to effective treatment and 
preventative measures. The psychosocial impact of living with the 
disease is another critical area of concern.
    Detailed studies are needed on the safety and efficacy of fetal 
hemoglobin enhancing drugs. A break though in this area could eliminate 
the need for repetitive transfusions. This, in turn, would eliminate 
the need for iron chelation therapy, as well as further reducing the 
risk of acquiring diseases from other blood-borne pathogens, such as 
HIV/AIDS, hepatitis C, and others. The more broadly available this 
treatment, the closer we would be to relieving the burden of this 
disease. For the specific form of thalassemia that Michael has, for 
example, these drugs work very well. For other types, they do not. We 
need to know why and we need to know how to make them work for all 
patients.
    Finally, Mr. Chairman, no recitation of research opportunities 
would be complete without reference to the potential for gene therapy. 
As the Human Genome Project races toward its completion of the 
sequencing of the genome in the next couple of years, the opportunities 
to fix the gene that causes Cooley's anemia will certainly present 
itself. It is critically important that the scientific community is 
positioned to exploit that opportunity and repair the mutated gene.
    Mr. Chairman, the RFA to create the Thalassemia Clinical Research 
Network was issued by the NHLBI and I have spoken a great deal about 
their efforts with you today. However, I would be remiss if I did not 
point out that some of the important research into Cooley's anemia is 
handled by NIDDK. In fact, the RFA specifically points out that NIDDK 
and NICHD are potential avenues for funding for some of the research 
that will take place through the Network.
    We at the Cooley's Anemia Foundation are ready, willing and anxious 
to work with any and all of the institutes at NIH that are interested 
in our children's specific problems. The level of expertise that exists 
on that campus and throughout the scientific research community in the 
United States and in Canada is truly amazing. It is the reason why we 
continue to have hope for a better future.
    Part of that better future, of course, will be realized if this 
Committee is able to continue the effort it began last year to double 
the NIH budget over a five-year period. I fully understand the 
pressures that are placed on this Committee. You are asked to fund some 
of the most important programs of the Federal government and choosing 
between medical research, and early childhood education, and worker 
safety requires great patience and wisdom--and more money than the 
Budget Committee routinely allocates to you.
    But, as you look around this room this afternoon and on all the 
days of outside witness testimony, I know that you all understand the 
direct relationship between the decisions you make and the quality of 
life of someone like my son Michael. Michael is blessed to grow up in a 
magnificent time in the greatest country on Earth. Open before him is a 
limitless world of opportunity and choices.
    He simply has one challenge that stands in his way. That is the 
challenge of Cooley's anemia. But today, with the creation of the 
Thalassemia Clinical Research Network, we are seeing the beginning of 
the opportunity to scale that mountain. We are seeing the beginning of 
a new day for these patients. The progress that has been made in the 
last twenty years has been breathtaking. But it cannot begin to compare 
to what we are going to do--together--in the next five years.
    For that, I thank the Committee and our friends at the NIH and 
scientists around the country and the world. Together, we will be able 
to beat this disease and will bring another group of our citizens fully 
into the mainstream of American life.
    Thank you again for the opportunity to appear before you today.
                                 ______
                                 
       Prepared Statement of the Jeffrey Modell Foundation, Inc.
    Good morning, Mr. Chairman and members of the Committee. It is a 
singular honor to have the opportunity again this year to present 
testimony to this subcommittee on behalf of the Jeffrey Modell 
Foundation, which my husband, Fred, and I founded in 1987. I would like 
to spend a little time in this testimony telling you about our 
successes, our successful partnerships, and our progress in fighting 
primary immune deficiency disease. This remains an insidious, still 
largely unknown, disease. Then, I would like to talk to you about what 
we at the Foundation see as the major challenges that lie ahead of us.
                                research
    Mr. Chairman, as you know, the Jeffrey Modell Foundation does not 
come around with its hand out, looking for someone to solve our 
patients' problems. We are vigorous and active participants in the 
research process. There are several examples and I would like to review 
them with you now.
    First, with regard to the National Institute of Allergy and 
Infectious Diseases (NIAID), the Jeffrey Modell Foundation is currently 
co-funding three research projects. These projects are being undertaken 
at three major medical research institutions as a result of responses 
to Program Announcements (PA's) made by the institute. The applications 
went through the normal peer review process and were judged to be 
excellent. We are currently in the second year of the funding cycle for 
these grants.
    Second, at the National Institute of Child Health and Human 
Development (NICHD), we have followed the identical process and again, 
we are funding three research projects. We are in the first year of 
funding these grants and we are very encouraged that the work that is 
being done will have a solid impact in advancing the science with 
regard to primary immune deficiency.
    Third, at the National Cancer Institute, last year we discussed the 
important connections between cancer and inherited immune deficiencies. 
This Committee included report language last year urging that a 
symposium be held among NCI, NIAID, NICHD and NHGRI to explore those 
connections and develop a research plan. We were delighted to read in 
NCI's budget justification that such a symposium will be held in the 
current fiscal year and we look forward to working with NCI on it.
    In addition, we should point out the key role in this symposium 
being played by the Office of Rare Diseases (ORD) in the Office of the 
Director. This small agency, under the leadership of Dr. Stephen Groft, 
has been exceedingly generous in its financial support for this 
symposium. We look forward to working with them in the future on the 
next round of symposia to further understanding and help establish a 
comprehensive NIH research agenda.
    Finally, as you know, we have in the past funded graduate fellows 
at NHGRI. That institute continues to make remarkable progress in 
identifying the genes responsible, in whole or in part, for one or more 
of the 80 different forms of primary immune deficiency diseases. NCI's 
budget justification cites 75 different genes identified to date and 
that is happening because of the strong and coordinated effort taking 
place at the Genome Institute.
    Needless to say, Mr. Chairman, with interests in four different 
institutes (and we could make a case to be involved in a couple more), 
the Jeffrey Modell Foundation is deeply interested in the entire 
research enterprise at the National Institutes of Health (NIH) and we 
hope that the Committee will continue to exercise its strong support. 
We are disappointed that the Administration's budget includes such a 
small increase for the institutes for next year and strongly support 
your efforts to keep NIH on a path to double the funding over a five-
year period, beginning in fiscal year 1999.
    The National Institutes of Health is one of the great success 
stories of the federal government. Its contributions to public health, 
to curing disease, to improving people's lives are well known. But, it 
also makes extraordinary contributions to the economy, to our balance 
of payments, and to our productivity. Appropriating funding for NIH is 
an investment in all Americans.
                        education and awareness
    As you know, Mr. Chairman, as important as our investments in 
research are to the Jeffrey Modell Foundation, we believe that our true 
calling, the place where we can have an immediate impact on people's 
lives is in the area of developing an improved education and awareness 
of primary immune deficiency diseases among the Congress, physicians, 
other health care workers and the general public.
    Simply put, Mr. Chairman, in addition to the 500,000 diagnosed 
cases of primary immune deficiency, experts estimate that there are at 
least another 500,000 cases that remain undiagnosed or misdiagnosed. It 
is that second group that we are targeting. They are the children who 
miss school because they are ``sickly.'' They are the ones who 
sometimes have antibiotics thrown at them, one after another. They are 
the ones that are draining resources from the health care system and 
causing their parents to miss work on a regular basis.
    We brought the concept of an education and awareness campaign to 
the subcommittee last year and, as you have always done, you encouraged 
us to move forward. And we have. I would like to report to you today on 
what we have accomplished since we were last here, tell you about the 
help we have had from our friends in the federal government and then 
tell you about the areas where much more has to be done.
    First, let's take a look at the Jeffrey Modell Foundation itself. 
We have continued to enjoy great success. We have created three 
education and awareness centers, located in New York, Boston and 
Seattle and coincident with our Foundation-funded research centers in 
those same locations. By tying the researchers to the education and 
awareness programs, we believe that we enhance both programs. The 
natural relationship between them is strengthened and their 
effectiveness multiplied.
    NICHD, Mr. Chairman, has been a wonderful partner. Under the 
extraordinary leadership of Dr. Duane Alexander, Child Health has 
produced a detailed brochure that significantly moves the understanding 
of these diseases forward. In addition, we are assured that the 
institute will remain a strong and active partner, willing to commit 
its resources to additional elements of this campaign.
    Just three weeks ago, we met with senior officials at NIAID and I 
would like to report to the Committee that they too have agreed to join 
in this effort. NIAID has much to offer to a campaign of this nature. 
They were the first institute with whom we collaborated on research and 
one where we have strong ties. We feel fully confident that NIAID's 
participation will bring a substantial step forward for our efforts.
    Another partner in this campaign is the Centers for Disease Control 
and Prevention in Atlanta. CDC has extraordinary talent in education 
and awareness campaigns. The Committee adopted report language urging 
CDC to ``collaborate with NICHD to educate physicians, other health 
professionals and parents about the detection and management of primary 
immune deficiency diseases.''
    Mr. Chairman, we are somewhat concerned that perhaps CDC did not 
fully understand the Committee's intent. As I said above, we have 
raised precious funds for this project, as we always do. NICHD has 
already committed resources to this campaign and is willing to do more. 
NIAID has said that they are on board. But, CDC has indicated to us 
that they do not have a ``funding stream'' for this endeavor. Well, we 
are not experts in government finance. But, it would seem that the 
agency of the federal government charged with disease control and 
prevention might be able to find, within its $2.6 billion budget at 
least as much as a small foundation that raises less than $2.0 million 
per year for a class of diseases that is undiagnosed or misdiagnosed 
among at least 500,000 Americans, most of whom are children.
    Once again, Mr. Chairman, we are not asking CDC, or any of the 
institutes of the NIH, or anyone else to do anything that we are not 
willing to do ourselves. We have spent countless hours meeting with 
pharmaceutical and biotech company representatives, patiently 
explaining who we are, what we do, why it matters. By and large, they 
have been responsive and generous in their support. All we ask--all we 
have ever asked--is that our government be our partner.
    We envision an education and awareness campaign that will truly 
``move the needle'' on understanding this class of diseases. Our 
efforts will be targeted at doctors, like pediatricians and family 
practitioners; it will be targeted at other health care professionals, 
like school nurses and managed care plans; and, most importantly, it 
will be targeted at the parents of young children.
    The basic message of this campaign will be to say that if a child 
seems sick more than other kids--if he or she has more than eight ear 
infections in a year, or two or more serious sinus infections, or two 
or more pneumonias, or any of the other ten warning signs--maybe there 
is a problem. At that point, the doctor should consider drawing some 
blood and looking for a primary immune deficiency.
    That simple act could save a lifetime of illness for a young 
person. Many of these diseases can be effectively treated if they are 
diagnosed early and they are diagnosed correctly. Prescribing the 
correct treatment can prevent the long-term damage that occurs when 
children become sick over and over again unnecessarily. Damage to the 
lungs, in particular, seems to be cumulative and debilitating.
    Related to this point, Mr. Chairman, I should point out that this 
past year has been a difficult one for many of the half million 
Americans who rely on infusions of intravenous gammaglobulin. This is 
the blood component that gives them a chance to stay healthy and, in 
some cases, a chance to survive.
    There has been an unfortunate shortage over this past year and we 
at the Jeffrey Modell Foundation have worked responsibly to assure 
continuity of supply by moving with industry, the House Oversight 
Committee on Blood Safety and the FDA. Our initiatives have enhanced 
communication and helped build bridges of trust between manufacturers, 
regulators, specialist physicians, patients and their families. But 
once again, education is the underpinning of trust and, in this 
instance, the education is so important as to be a matter of life and 
death.
    Mr. Chairman, the Jeffrey Modell Foundation is dedicated to finding 
a cure for the primary immune deficiency diseases. We are also 
dedicated to creating an environment in which children with these 
diseases are diagnosed correctly, at the earliest possible date, 
treated appropriately and able to move forward living a healthy and 
normal life.
    This subcommittee, collectively, and its members, individually, 
have always greeted us very warmly when we have come to Washington. We 
have been supported in what we have tried to do, we think, because it 
is right and because we are going about it in the right way. Our 
message to you this year is that we have made progress in the past 
year, but there remains a great deal for us to do. If you keep doing 
what you have been doing--funding research and supporting our efforts--
we will keep working on behalf of these children. And together, we will 
have improved people's lives. Certainly there can be no higher calling 
than that.
    Thank you Mr. Chairman.
                                 ______
                                 
   Prepared Statement of Stephen A. Spector, M.D., Chair, Executive 
            Committee, Pediatric AIDS Clinical Trials Group
    Chairman Specter and members of the subcommittee, thank you for 
inviting me to appear this morning. I am Dr. Stephen Spector and it is 
an honor to testify today as a member of the board of directors of AIDS 
Policy Center for Children, Youth and Families.
    AIDS Policy Center was founded in 1994 to help respond to the 
unique concerns of HIV positive and at-risk children, youth, women and 
families and their service providers. The Center conducts policy 
research, education and training for consumers and providers on a broad 
range of HIV/AIDS prevention, care and research issues. Affiliates 
include over 500 community-based organizations in 27 states, D.C. and 
Puerto Rico.
    In addition, Mr. Chairman, I am a Professor & Vice-Chairman of the 
Department of Pediatrics at the University of California, San Diego, 
and Chair of the Executive Committee of the Pediatric AIDS Clinical 
Trials Group (PACTG). The PACTG is the leading clinical research group 
in the world dedicated to the prevention of mother-to-infant 
transmission of HIV and improved strategies for the treatment of HIV-
infected children and adolescents. It is funded through a joint effort 
of the National Institute of Allergy and Infectious Diseases and the 
National Institute for Child Health and Human Development.
    The PACTG has been responsible for carrying out the studies 
demonstrating that transmission of HIV from an infected pregnant mother 
to her infant can be dramatically reduced by AZT treatment, for 
establishing new treatments for HIV-infected children and for having 
changed HIV infection of children from an invariably fatal disease to a 
chronic illness.
    I appreciate the opportunity to discuss the method(s) by which the 
National Institutes of Health allocates resources among the many 
disease research priorities and opportunities. In the broad 
perspective, there are fundamentally three different categories of 
research that require support: basic science, studies of pathogenesis 
or translational research, and clinical research including clinical 
trials, epidemiology, behavioral and social science research. I would 
like to spend a few moments discussing each of these areas.
    Basic research is the driving force behind new advances and most 
importantly new conceptual breakthroughs in biomedical science. By its 
very nature, it is unpredictable. By exploring what is unknown, basic 
research challenges what is known and questions long held dogma. It is 
most responsible for having revolutionized science in the twentieth 
century and will certainly impact on every facet of our lives in the 
centuries to come. Perhaps most importantly, the implications often 
cannot be predicted and frequently lead to significant benefit in areas 
far afield from the intent of the original research.
    As basic research has become more complex, the challenge is often 
to recognize the potential implications of basic research to questions 
specifically relating to human disease. This research, most recently 
termed translational science, extends the findings of basic science in 
an attempt to understand how a disease is caused or to how an illness 
can be identified or monitored. It attempts to understand why patients 
have the symptoms that they do. Translational research often generates 
questions and important new approaches for clinical researchers. Thus, 
translational research bridges the gap between basic science and 
clinical research.
    Clinical research evaluates novel approaches for the detection, 
treatment or prevention of disease. The best clinical research is 
tightly linked to basic and translational research. Importantly, 
clinical research not only develops new treatments and prevention 
strategies, but also generates new questions that must then be examined 
by laboratory based scientists. Clinical research often, like basic 
science, overturns dogma in its search for the truth.
    An important quality of research at the basic, translational and 
clinical level is that often what is observed in one area has broad 
implications for other areas of human disease. Researchers from 
multiple disciplines must be encouraged to cross boundaries in order to 
provide the scientific synergism necessary to solve complex problems. 
Additionally, the ability of scientists to rapidly transition from 
basic research to clinical application provides the greatest 
opportunity for preventing and treating human illness. This is 
particularly true for research involving AIDS and HIV. For example, the 
ability of chemists to isolate protein crystals enabled researchers to 
identify the crystal structure of the HIV protease. With knowledge of 
the crystal structure, drugs were developed that specifically inhibit 
the HIV protease. These drugs have formed the cornerstone for new 
combination therapies that have significantly slowed the progression of 
HIV-related disease in adults and children.
    Moreover, these drugs have often reversed the immunologic defects 
caused by HIV infection. In HIV-infected children, as their immune 
systems have improved we have come to a surprising realization. That 
is, we do not know in many situations what constitutes the normal 
immune response of healthy children. Thus, in order to evaluate the 
reconstituted immune system of HIV-infected children, we will also 
learn what constitutes a child's normal immune response. This knowledge 
will help us to better treat childhood cancers, congenital immune 
deficiencies, premature infants as well as others. Additionally, as 
potent combination treatments for HIV-infected individuals have become 
available, these same treatments are being given to HIV-infected 
pregnant women. Preliminary findings suggest that these new treatments 
are more effective than AZT alone in decreasing the transmission of HIV 
from a pregnant woman to her infant.
    In addition to providing new knowledge of the normal immune system 
of adults and children, drugs that have been developed for treatment of 
HIV infection and its complications have also found uses for treatments 
of other infections including hepatitis B, hepatitis C, 
cytomegalovirus, herpes simplex virus and others. Patients with cancer, 
patients receiving transplants (including heart, lung, liver, kidney 
and bone marrow), patients with genetic disorders (such as those with 
sickle cell anemia), patients with diseases of the central nervous 
system (such as those with Alzheimer's disease, dementia and multiple 
sclerosis) have benefited from advances made by AIDS research.
    How NIH allocates resources among the many disease research 
priorities and opportunities is multi-factorial and must provide room 
for flexibility such that NIH is able to take advantage of emerging 
research opportunities and to fund the highest caliber research. This 
must be done within the context of responding to public health needs 
and to taking advantage of those opportunities that have the highest 
likelihood of success while continuing to explore areas requiring 
fundamental advances. Additionally, the world looks to the leadership 
of the NIH to provide new scientific insights and approaches to the 
treatment and prevention of diseases including tuberculosis, parasitic 
infections and AIDS. We are a global society and NIH funded research 
must reflect global diseases. There is no road map for science so that 
many different approaches often involving many different disciplines is 
required to address the most challenging questions. Even then, the 
fundamental breakthrough often comes from totally unrelated projects 
and insights.
    As a biomedical researcher and a pediatrician who specializes in 
infectious diseases, I am concerned by the suggestion of some that a 
mathematical formula could be used to determine research budgets for 
specific diseases. These models invariably reduce funding for children 
and pregnant women. Moreover, they fail to seize the research 
opportunities that can lead to the rapid development of strategies for 
disease prevention and treatments. Much has been learned from research 
that was first performed in children. The advances in childhood 
leukemia have been applied for the treatment of adult cancers. 
Similarly, the demonstration that the transmission of HIV from an 
infected pregnant mother to her infant could be interrupted through AZT 
treatment led to studies that demonstrated that similar approaches can 
decrease infection following needle stick exposure and have generated 
interest in the concept of other post-exposure prophylaxis. 
Additionally, history has taught us that as an infectious disease 
declines, if we become complacent and decrease funding for research, 
there is a resurgence of that infection. The recent resurgence of 
tuberculosis as a major health problem is one such example.
    The multi-disciplinary nature of AIDS requires a coordinated 
effort. The Office of AIDS Research is a critical component to the 
successful prioritization and planning of NIH's AIDS research budget. 
The OAR must have the resources necessary to lead NIH's HIV/AIDS 
program. The PACTG intends to work closely with the OAR to develop 
future research priorities and initiatives, including vaccine and other 
prevention research and international priorities.
    Further, AIDS Policy Center for Children, Youth and Families and 
the National Organizations Responding to AIDS Coalition support 
increased funding for AIDS research in the context of an overall 
increase in our nation's investment in research. We support a 15 
percent increase for the NIH overall in fiscal year 2000 and a 
commensurate increase for AIDS research.
    In summary, I believe that: NIH must be responsive to Public Health 
concerns; NIH must fund a broad range of basic, translational and 
clinical research; and NIH must have the resources and flexibility to 
take advantage of rapidly changing research opportunities.
    Thank you again for the opportunity to speak to the subcommittee. I 
will be pleased to answer any questions.
                                 ______
                                 
   Prepared Statement of Laurie Flynn, Executive Director, National 
                     Alliance for the Mentally Ill
    Chairman Specter and members of the Subcommittee, I am Laurie 
Flynn, executive director of the National Alliance for the Mentally Ill 
(NAMI). I am pleased today to offer NAMI's views on the two agencies in 
the Subcommittee's fiscal year 2000 bill that are of tremendous concern 
to people with serious brain disorders and their families: the National 
Institute of Mental Health (NIMH) and the Center for Mental Health 
Services (CMHS) at the Substance Abuse and Mental Health Services 
Administration (SAMHSA).
                              who is nami?
    NAMI is the nation's largest national organization, 208,000 members 
representing persons with serious brain disorders and their families. 
Through our 1,200 chapters and affiliates in all 50 states, we support 
education, outreach, advocacy and research on behalf of persons with 
serious brain disorders such as schizophrenia, manic depressive 
illness, major depression, severe anxiety disorders and major mental 
illnesses affecting children.
    Mr. Chairman, 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 decade 
have we seen the first real hope for people with these brain disorders 
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 80 percent. For 
major depression, the rate has climbed to nearly 65 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.
               severe mental illness research at the nih
    Mr. Chairman, I would like to thank you and your colleague Mr. 
Harkin for the leadership you have displayed in recent years in 
bringing significant increases to the National Institutes of Health 
(NIH) budget. Biomedical research and the NIH are central to improved 
treatments for severe mental illnesses and ultimately the cure of these 
disabling brain disorders. NAMI's consumer and family membership is 
deeply grateful for this bipartisan effort to make biomedical research 
a top national priority.
    At this point, as we come to the close of the Decade of the Brain--
an initiative that grew out of the leadership of your former colleagues 
Chairman Mark Hatfield and the late Lawton Chiles--it is important for 
us to put into perspective the gains we have witnessed in brain science 
that have benefited people with serious brain diseases such as 
schizophrenia and other severe mental illnesses. We also need to plan 
for the future gains that are so necessary.
    I noted earlier that severe mental illnesses are often quite 
effectively treated. In fact, tremendous advances in treatment of 
severe mental illnesses occurred during the last ten years, the Decade 
of the Brain, from the introduction of Prozac and Clozapine, which have 
virtually revolutionized mental illness treatment. Today, many more 
consumers, patients with serious mental illnesses, stand able to take 
charge of their lives, to be productive, to enjoy recovery, because of 
these treatment advances.
    But we should not underestimate how much more must be learned. The 
brain regions involved in these serious mental disorders, the molecules 
at the roots of the terrible symptoms, the genes that lead to 
vulnerability to these illnesses remain to be fully probed. The Decade 
of the Brain has really only brought us to the threshold of discovery 
when it comes to brain diseases such as schizophrenia, manic-depressive 
illness, obsessive-compulsive disorder, and others. We are only now 
poised to fully probe and finally understand the biological 
underpinnings of the most serious mental illnesses.
    Treatment for mental illnesses, while impressive and comparable to 
some of the best treatments in all of medicine, are still unacceptable 
for patients, families, and our society. Many people with severe mental 
illnesses find only incomplete relief from their symptoms; disability 
is still all too commonly associated with these illnesses. For bipolar 
disorder, or manic-depressive illness, treatment works for many much of 
the time, but not for all and not for all symptoms. Individuals with 
obsessive-compulsive disorder, a brain disorder we have pinpointed to 
specific higher regions of the brain, still often fail to achieve much 
gain in treatment. For children matters are worse because we know so 
little about the illnesses as they emerge during development, and we 
know even less about how to effectively and safely treat them.
    The national need for severe mental illness research is most 
starkly demonstrated by particularly terrible statistics. Our nation 
stands in the midst of a virtual catastrophe: a suicide epidemic. 
Suicide is the eighth most common cause of death in this country and 
the fourth most frequent cause of life lost under age 65. Rates are 
increasing among young men and the elderly. As it stands, 30,000 
Americans will die by suicide this year, most of whom have a serious 
mental illness. The most severe mental illnesses--schizophrenia and 
bipolar disorder--disproportionately lead to suicide. Ten percent of 
the 2,000,000 U.S. citizens with schizophrenia are taking their lives; 
about half will make a suicide attempt at some point. Fifteen percent 
to 20 percent of the approximately 2,000,000 Americans with bipolar 
illness will die by suicide.
    That severe mental illness research ought to be a priority for our 
nation is also demonstrated by data from the World Bank and World 
Health Organization. Severe mental illnesses--major depression, bipolar 
disorder, schizophrenia, and obsessive-compulsive disorder--account for 
four of the top 10 most disabling illnesses in the world. These brain 
disorders account for an estimated 20 percent of total disability 
resulting from all diseases and injuries. I hope that this summary of 
the problem posed by severe mental illnesses convinces you that severe 
mental illness research must be a priority, especially given the 
scientific opportunities that exist in the brain sciences. Let me 
concentrate now on what we think are sound goals for NIH and NIMH, 
respectively, so that we can bring the full force of our research to 
bear on this most important health emergency.
     nih investment: a call for increased funding & accountability
    We applaud your leadership in supporting increases for the NIH. 
NAMI urges the Subcommittee to follow the recommendations of the 
scientific community and the Ad Hoc Group for Medical Research Funding 
and increase overall funding for NIH by $2.3 billion (a 15 percent 
boost) for fiscal year 2000.
    But increased resources are not the only important objective for 
NIH: better accountability is also essential. We at NAMI also applaud 
your efforts to fairly boost NIH funding and limit disease-of-the week 
approaches to appropriations. Research support at the basic level as 
well as in diseases is all-important, as is investment in basic 
technological development and research, in computer sciences and 
physics, to name but a few. Nonetheless, we urge you to press NIH to 
invest their resources according to public health need as well as 
scientific opportunity, as the Institute of Medicine report from last 
year called for. If NIH is to be in the forefront of the public health 
improvements that will lead to the most benefit for the people of this 
nation who support it through their tax dollars, NIH must balance its 
investment among diseases so that not the loudest advocate or the most 
connected advocacy group wins research investment, but so that the most 
disabling and costly illnesses facing the nation are prioritized. 
Obviously, severe mental illnesses would and should be a top research 
priority. Yet, based on NIH's own recent estimates, $1.00 is invested 
in research for every $6.86 in costs of AIDS, $9.96 in costs of cancer, 
$65.65 in costs of heart disease, and $161.26 costs in schizophrenia. 
In other words, 15 cents is spent on AIDS research per dollar of costs, 
compared with 10 cents for cancer, two cents for heart disease, and 
less than one cent for schizophrenia. This is obviously not a wise 
research investment strategy for the United States.
    Also on the accountability front, we are very concerned that NIH 
has not developed a consistent definition of neuroscience research and 
applied it evenly across the institutes. According to our own analysis, 
which we are preparing to release, it is almost impossible to discern 
how much the NIH spends on neuroscience research across 20 of its 24 
institutes. In short, at the end of the Decade of the Brain we cannot 
reliably say how much has been spent on neuroscience research--even 
though it offers tremendous opportunities and is crucial to some of the 
most disabling illnesses facing this nation. Moreover, NIH estimates of 
investment in clinical research are also questionable. We urge you to 
press NIH to develop a more consistent and accurate approach to 
accounting for its neuroscience investment as well as its clinical 
research--these are crucial data for you as leading science policy 
makers as well as for us, who represent those with severe brain 
disorders whose best hope lies in research.
         nimh: the key to the cure for severe mental illnesses
    For NIMH, we also applaud this Subcommittee's leadership, 
demonstrated by your boosting its appropriations significantly in the 
past few years and by nearly 15 percent in fiscal year 1999, up to its 
current level of $861 million. This is the year, Mr. Chairman, that 
NIMH should go over the $1 billion mark. Why? Not only are severe 
mental illnesses among the most costly facing our nation, as I have 
described above. Not only does neuroscience offer tremendous 
opportunities for advances, as is clear. Only with a 18 percent 
increase in its budget, to $1 billion dollars, would NIMH be able to 
have a success rate for its reviewed grants of \1/3\, funding 754 new 
and competing grants. The President's budget proposal, which would 
permit the smallest annual increase for NIH in the past two decades, 
would only allow for the funding of 455 new and competing grants--a 20 
percent success rate. This at a time when NIMH is attracting more 
research grant applications than any other institute due to the 
leadership of the institute and the tremendous research opportunities 
that exist in the neuroscience's and in severe mental illness research. 
We absolutely should ensure that this time of interest, strong 
leadership, and research opportunity is taken--so that people with 
serious brain diseases have the best hope for the future, for 
themselves and for their families and future generations.
    We urge you, Mr. Chairman, to help ensure that NIMH continues its 
move to spend its tax-payer dollars wisely, with investments in basic 
neuroscience and molecular biology that will undergird the new 
treatment frontier for severe mental illnesses and also with strong 
commitments to serious brain disorder pre-clinical, clinical, and 
services research. NIMH should continue its efforts to identify genes 
linked to severe mental illnesses; to fund and expand clinical research 
into psychotic illnesses, serious disorders in children, and in mood 
disorders; to continue the probe of the biology of serious mental 
disorders including schizophrenia, mood, and anxiety disorders. NIMH 
should also use the tools of behavioral science to better understand 
the expression and best treatment of severe mental illnesses. But 
research in prevention and psychosocial research must be aimed at 
serious mental illnesses. We cannot go back to the days, as NIMH's own 
advisory council lamented of a prevention research portfolio that by 
definition excluded serious mental illness research and instead focused 
only on social problems such as child abuse, divorce or poor self-
esteem so as to improve the nation's mental health. We cannot let 
another five years and $40 million go to studying children who 
misbehave while we know so little about serious mental illnesses in 
children and how to effectively treat these disorders.
    We know that serious mental illnesses are brain disorders, are 
treatable, and are extremely costly--we know the kinds of research that 
is needed to eradicate these problems. We cannot permit the federal 
government to avoid addressing these most pressing public health 
problems in an effort to promote well-being and self-esteem in the 
population, or, more accurately, to promote full employment of mental 
health counselors and researchers, while our nation's most disabled 
citizens with the most costly diseases to the country are ignored.
    What research issues are most compelling for our members, the more 
than 200,000 Americans facing a serious brain disorder? More basic 
research on the brain and higher brain functioning. More pre-clinical 
research on the genes, molecules, and brain regions involved in severe 
mental illnesses. More clinical research aimed at understanding the 
best treatment for these serious disorders and translating that 
research into practice. More research aimed at finally better 
understanding and treating these brain disorders in children. Research 
aimed at diminishing relapse and disability in severe mental illnesses. 
More research on how people with severe mental illnesses best receive 
treatment and services. An accountable and responsible research 
investment strategy that will help the nation's individuals with severe 
mental illnesses and their families, as well as the country at large, 
which must shoulder the burden and costs of these illnesses.
                             samhsa & cmhs
    Mr. Chairman, in addition to urging the Subcommittee to support 
increased funding for brain research, I would also like to note the 
importance of federally funded mental illness services through the 
Center for Mental Health Services at SAMHSA. Federal support for 
community-based care is a critical resource for people with the most 
severe mental illnesses. With many states reducing their psychiatric 
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 Block Grant 
(MHBG) now constitutes nearly 40 percent of all non-institutional 
services spending in some states.
    In the President's fiscal year 2000 budget proposal, a 24 percent 
increase is proposed for the MHBG (up from its fiscal year 1999 
appropriation of $288.8 million to $358.8 million). MHBG funding has 
remained frozen since fiscal year 1992. Since that time, we have 
witnessed the continued widening of gaps in the public mental illness 
treatment system in many states. The consequences of these emerging 
cracks in the service system are readily apparent, not just to NAOMI's 
consumer and family membership, but also to the public: the growing 
number of homeless adults on our nation's streets who receive no 
treatment services, well publicized tragic incidents involving 
individuals with severe mental illness who are not accessing adequate 
treatment services and the growing trend of ``criminalization'' of 
mental illness and the stress it is placing on state and local jails 
and prisons.
    The causes of these growing gaps in the services are varied and 
complicated: the trend toward privatizing state Medicaid programs 
through contracting with private managed care firms, cuts in Medicaid 
Disproportionate Share Hospital (DSH) funding and expansion of the 
mission of public mental health programs beyond serving the most 
severely disabled consumers. Moreover, in recent years state mental 
health agency budgets have been under increasing pressure as a result 
of forces beyond their control. Among these forces are restrictions on 
eligibility for SSI and SSDI for people whose disability is based in 
part on drug abuse or alcoholism and a 1997 U.S. Supreme Court decision 
allowing states to commit sexually violent predators to state 
hospitals. NAMI therefore believes that this increase in funding for 
the MHBG is long overdue.
    In addition to supporting the Administration's proposed increase, 
NAMI further recommends that the Subcommittee target all additional 
funds for the MHBG in fiscal year 2000 to state and local evidence-
based, outreach-oriented service-delivery models for persons with 
severe mental illness in the community. In particular, NAMI urges that 
any increase in MHBG funding be directed to assertive community 
treatment, including the Program of Assertive Community Treatment, or 
PACT. PACT programs use a 24-hour, seven day-a-week, team approach that 
delivers comprehensive treatment, rehabilitation and support services 
in community settings. High-quality PACT programs are typically 
implemented at a cost that is significantly less than placing an 
individual in a jail, a residential treatment program or a hospital. 
PACT is especially effective in serving persons who are the most 
treatment resistant, persons with a co-occuring mental illness and 
substance abuse disorder and persons who are high users of inpatient 
hospitalization services.
    In addition, NAMI recommends that the Subcommittee consider 
requiring states to report an unduplicated count of persons served by 
diagnosis, age, and services consumed using the targeted initiative 
MHBG funds.
    NAMI is also concerned that the Substance Abuse Treatment and 
Prevention Block Grant is not currently supporting programs serving 
persons dually diagnosed with mental illness and addictive disorders. 
Evidence-based research, as confirmed by the NIH, verifies that 
integrated treatment, as opposed to parallel collaborative or 
sequential approaches, is the most effective model for serving persons 
with a dual diagnosis. NAMI therefore recommends that the Subcommittee 
direct SAMHSA to allow states to use funding from both programs to 
promote integrated treatment services for persons with co-occuring 
mental illness and addictive disorders.
    NAMI is pleased that the President's fiscal year 2000 budget 
includes a proposed $5 million increase for the PATH program (up from 
its current $26 million, to $31 million). PATH is a formula grant 
program to the states to support local programs serving homeless 
persons with severe mental illness. This increase in PATH funding will 
help communities all across the country increase access to treatment 
and supports for the growing number of homeless with severe mental 
illnesses.
    Finally, with respect to CMHS's Knowledge, Development and 
Application (KDA) program, NAMI would like to cite the important work 
of the agency's Survey and Analysis Branch in helping to assess the 
impact that changes in our healthcare system are having on persons with 
severe mental illnesses and their families. The growth of family 
education and peer support over the last decade has undoubtedly made a 
significant contribution to the reduction of inappropriate 
hospitalization and substantial long-term savings to the nation. Given 
the insufficient level of housing and rehabilitation opportunities at 
the community level, NAMI believes that CMHS can and should be doing 
more to support the role of family as caregiver. This crucial 
investment in our public system can and should be continued through 
family and consumer outreach as an essential use of CMHS's KDA 
resources.
    Moreover, in our rapidly changing healthcare environment, it is 
becoming increasingly important for people with serious brain disorders 
and their families to serve as monitors of adequate and high quality 
treatment-especially in the area of Medicaid managed care and the 
reconfiguration of the public mental health system in many states. NAMI 
believes that CMHS should use its resources to assist consumers and 
families to fulfill this important role.
                               conclusion
    Mr. Chairman, thank you for the opportunity to offer NAMI's views 
on fiscal year 2000 funding for programs of critical importance to 
people with serious brain disorders. NAMI looks forward to working with 
you in the coming months to educate both the general public and your 
colleagues in Congress about the critical importance of investment in 
biomedical research.
                                 ______
                                 
 Prepared Statement of Terrie Cowley, President, TMJ Association, Ltd.
    On February 25, 1999, you will conduct the Appropriations 
Subcommittee hearing on the National Institute of Dental and 
Craniofacial Research (NIDCR) budget. For the past two years, you have 
responded to the needs of the temporomandibular joint (TMJ) patients of 
this country by inserting report language into the NIDCR budgets. The 
Senate has done this for the past five years. As an organization that 
represents TMJ patients of this country, I would like to brief you on 
the progress made on this disease/disorder at the NIH as we see it.
    Since the Congressional Hearings of June 4, 1992, entitled ``Are 
FDA and NIH Ignoring the Dangers of Jaw Implants?'', several important 
events have taken place. In 1993, the NIDR sponsored the First 
International Workshop on TMD, steps were taken to plan a Technology 
Assessment Conference on the Management of TMD which was held in 1996, 
and in 1995, a RFA in the amount of $1,770,000 was directed toward 
basic research of TMJ diseases/disorders. The planning of these events 
took place before Dr. Slavkin became Director of NIDCR.
    The events of the past seven years have conclusively demonstrated 
that there is little science to explain the etiology and pathogenesis 
of TMJ, and little scientific basis to treatments being recommended to 
the over 10 million TMJ patients of this country. What is worse, many 
of these treatments have actually caused a TMJ problem or worsened an 
existing one. Even the epidemiology of this disease/disorder is 
deficient. The NIDCR says that ``over ten million people'' have TMJ. 
Dr. Slavkin said to me, ``we don't know whether it is twenty million 
people over ten million, or two.'' Congressional report language has 
requested several areas of action to be taken by NIDCR. They are:
the formation of an interagency committee to develop a short- and long-
                 range strategic plan for tmd research.
    After three years of Senate and two years of House report language 
directing NIDCR to form an intra-institute, inter-agency committee to 
develop short and long-range strategic plans for TMJ research, a 
meeting finally took place on July 14, 1998. A second meeting was 
scheduled for September 11th, then rescheduled for October 14th. That 
meeting was then canceled. We have not been notified of any further 
meetings. My inquiries regarding the status ranged from ``we have a new 
person heading that up'' to ``we have to put our efforts into 
formulating a response to Congress.''
    Several original members of that committee have contacted me 
concerning the lack of action. This inactivity is preventing other 
agencies from initiating programs, which could lead to improving health 
care for TMJ patients of this country. One example, the Chief Dental 
Officer of HCFA told me that until we have a clearly defined and 
implemented research agenda, they are unable to develop policy on 
treatments. He conveyed to me his frustration that he had to move this 
issue to the back burner. He went on to say that he had received a 
positive response from his superiors and would be willing to 
collaborate with the NIDCR. We respectfully ask Congress to ask the 
Administration for Health Care Policy & Research for information on the 
per-patient cost of TMJ treatments and to conduct an analysis of the 
efficacy of these treatments.
    One reason this is so important is that TMJ is not a specialty of 
the American Dental or Medical Associations. Thus, there are no 
standards for dental, medical or continuing education. Treatments 
abound based on belief, not scientific evidence and, let me emphasize 
many treatments cause a TMJ problem or can exacerbate an existing one. 
TMJ is excluded from most dental and medical policies and treatments 
are extremely expensive.
    Another example, Dr. John Watson, Deputy Director of the Heart, 
Lung and Blood Institute and a founder of the Bioengineering Consortium 
at the NIH, would have enlisted all bioengineering resources to 
initiate development of state-of-the-art devices for TODAY'S patients. 
We have many patients facing total joint replacements with devices that 
lack evidence of safety and efficacy and are basically 1940's 
technology. TMJ patients have experienced what one scientist called 
``the Great American Medical Disaster.'' They may well be facing 
another, or living an ongoing disaster. Congress could ask the NIH 
Director to implement a mission-oriented program for the research, 
development and evaluation of implants for treating TMJ diseases/
disorders, particularly for TODAY'S patients.
                       nih implant patient study
    The NIDCR implant patient study was to have been started by the 
beginning of the Technology Assessment Conference (April 1996). It 
finally did get underway in 1998 after much prodding by this 
organization. Unfortunately, the perception we have of this study was 
confirmed when I was told that the person directing the study recently 
admitted that he ``didn't have a clue what he is doing.''
    Considering the intellectual and scientific resources available at 
the NIH in immunology, arthritis and connective tissue diseases, with 
the Cancer Institute conducting research on breast implant patients, 
could they not have enlisted experts from outside the NIDCR? This would 
have been a great opportunity for the Bioengineering Consortium to 
investigate this device failure. Learning about particle disease would 
be of value in assessing devices used in every part of the body. TMJ 
implant patients are experiencing systemic and craniofacial problems 
that defy medical knowledge. Many have surrendered to the thought that 
these materials will eventually kill them. Yesterday, the husband of a 
Silastic TMJ implant patient told me his wife had salivary gland 
cancer. We cannot say the implants caused the cancer, but how do we 
know they didn't unless we conduct studies? Congress can request an 
update on this study, with emphasis on how this study will help the 
many TMJ implant patients, how soon, and in what manner.
follow the recommendations resulting from the nih sponsored technology 
                         assessment conference
    To my knowledge, there has been no PA, RFA, RFP, or training grants 
in the area of TMJ disease/disorder research as a result of these 
recommendations. The grant portfolio is scientist initiated, thus, the 
patients are at the mercy of those scientists who are already familiar 
with the field. Originally, Dr. Slavkin stated that NIDR needed money. 
The following year, they needed better scientists to be enticed into 
the field because they were not receiving qualified grants, the next 
year all institutes of NIH received money and so scientists would go to 
institutes other than Dental and having money wasn't the issue. Each 
year, we are presented with another reason for not seeing TMJ research 
``take off'' in a comprehensive, yet focused manner with those outside 
the TMJ field bringing their expertise to this area. I request that you 
once again direct NIDCR to develop short and long-term research plans 
with measurable goals, mandated annual updates and annual progress 
reports to Congress.
                               education
    Last week, a TMJ patient of one year called three times in one day. 
She cried and sounded extremely weak. I suggested she call the NIH for 
further information. When she called the second time, her voice 
quivering, she asked if there were words to use other than TMJ, for 
``you know how demeaning everybody acts when you say you have this.'' 
It is imperative that the HHS/NIH educate the medical professionals and 
the public as to the realities of TMJ. Only when the stigma is lifted 
from this disease will the patients and their loved ones know the 
respect and dignity they deserve. It is only then that they will admit 
to having ``TMJ.'' While on the subject of information, the material 
the NIDCR sends to TMJ patients is pathetic comparable to information 
on other diseases within their turf. When I questioned someone about 
updating the TMJ package, I was told it wasn't high on its priority 
list. Perhaps NIDCR and The TMJ Association would collaborate in 
preparing informational material for patients, professionals and the 
public.
    Congressmen, I think that Dr. Slavkin has done a remarkable job of 
bringing respectable science to our Institute. However, regarding TMJ, 
there have been too many high sounding words and promises followed by 
literally no action. I think it is time that Congress and Senate stop 
asking and begin directing NIDCR to heed report language. It has almost 
become a game to see how many years they could avoid accountability and 
responsibility. It is way past due that they took your directives and 
the needs of TMJ patients seriously.
    The TMJ Association and the ``over ten million'' TMJ patients of 
this country thank you for responding to their needs over the years by 
inserting report language into the NIDCR budgets. Your aggressive 
directives for action will help to improve the health care and quality 
of life of TMJ patients in this country.
                                 ______
                                 
  Prepared Statement of Susie Novis, President, International Myeloma 
                               Foundation
    Mr. Chairman, thank you for the opportunity to present the views of 
the International Myeloma Foundation in support of funding for multiple 
myeloma research at the National Cancer Institute and the National 
Institutes of Health.
                 multiple myeloma: an incurable cancer
    Multiple myeloma (FM) is an incurable cancer of the plasma cells of 
the bone marrow affecting approximately 50,000 Americans. MM patients 
experience bone fractures, particularly in the vertebrae and hips, and 
continuous, degenerative symptoms of bone loss that ultimately leads to 
death. Additional complications include kidney failure, severe anemia, 
pneumonia, shingles, and, in advanced cases, physical disability.
    In 1997 there were 13,800 new diagnoses of MM, representing an 
average incidence of 4 per 100,000, and 11,300 individuals died. 
Patients live an average of three to five years after diagnosis, 
although some survive for significantly longer time. The five-year 
survival rate of MM patients for the years 1974 to 1976 was 24 percent. 
In the period between 1986 to 1993 the five-year survival rate was 28 
percent, suggesting that little progress has been achieved.
    No categorical causes of MM are known. As the incidence and 
mortality rates continue to climb, we have observed that the 
populations affected by MM are also changing. Long associated with 
aging populations 65 and older, the demographic of the disease 
continues to get younger. At least 10-15 percent of patients are now 45 
years or younger. The incidence rates are 50 percent higher in males 
than females, but evidence suggests the rates of female incidence are 
rising.
    Myeloma incidence may be linked to prolonged or excessive 
environmental exposures. Recent evidence suggests a possible link to 
viruses. Research has found that MM is more prevalent in western 
industrialized countries. Within those countries, higher rates of 
occurrence have been observed in coastal, industrial zones, 
agricultural belts, and in areas with high concentrations of 
population. In other words, as the world becomes more industrialized, 
it is not illogical to assume that rates of MM incidence will rise 
accordingly.
      the international myeloma foundation: putting patients first
    The International Myeloma Foundation (IMF) was founded in 1990 by 
Brian D. Novis, a multiple myeloma patient who had been diagnosed in 
1988 at the age of 33. Like virtually all patients, the first time he 
heard about the disease was when he was diagnosed. Among his greatest 
frustrations was a lack of access to knowledge about the disease and 
specialists. So he responded by trying to correct the problem by 
founding the IMF with the help of other patients, doctors, and 
researchers who were interested in the field. The first, and in many 
ways, still the most important, project of the IMF was the 
establishment of a toll-free hotline that provided information to 
patients and family members when they most needed it.
    The IMF has grown from a grassroots response to the lack of 
information available about MM to become the foremost resource about 
the disease for patients and doctors alike. In 1992, the IMF hosted the 
first worldwide clinical conference ever held for MM specialists. The 
results of that conference led to the initial publication of Myeloma 
Today, which, at the time, was the only periodical focused exclusively 
on MM research and patient issues. That year also marked the death of 
the IMF's founder, Brian Novis, at the age of 37, just four years after 
his initial diagnosis.
    Now in its ninth year, the IMF has a membership of more than 50,000 
individuals worldwide with more than half in the U.S. Over the past 
five years, the IMF has conducted 20 Patient/Family Seminars to provide 
individuals access to the latest knowledge and the foremost experts. 
The most recent, held April 10, 1999 in Atlanta, Georgia, attracted 550 
patients and family members from 36 states, the District of Columbia, 
and Canada. To underscore the difficult access to expert opinions about 
MM, approximately 90 percent of the attendees had never been to such a 
meeting before. That, in turn, points out the value of the most 
important service the IMF provides. Through use of the hotline and mail 
requests, the IMF sends out--at no charge--more than 1,000 patient 
information packets per month to every request. In fact, if you are 
affected by myeloma, you know about the IMF--because it is likely the 
first source of comprehensive information you ever received about the 
disease.
    An integral part of the IMF mission is to elevate the importance of 
MM research. In order to encourage new investigators to enter the 
field, the IMF has funded 14 Brian D. Novis research grants since 1994. 
In 1998, five research grants worth $200,000 were awarded. This year 
that figure is expected to rise to $350,000. Most remarkably, these are 
raised primarily through contributions of $50 or less. Those who know 
about MM are doing all that they can to help and learn about the 
disease.
  the national cancer institute and myeloma research: an unfulfilled 
                                 legacy
    Thanks to answers to questions directed to the National Cancer 
Institute (NCI) by the House Appropriations Committee earlier this 
year, Mr. Chairman, the IMF believes there is a basis to support more 
MM research. When asked how many grants in the past five years were 
focused primarily on MM research, NCI could name none. By its own 
admission, NCI conducts a ``modest program of research related to MM.''
    Using a conservative approach, NCI estimated that it awarded $11.7 
million toward MM research in fiscal year 1999. That figure included 
$5.4 million for 22 new and non-competing grants with at least 25 
percent of the research effort directed toward MM. In addition, NCI 
stated only 8 of 24 approved, competing grants with at least 25 percent 
of the effort directed toward MM were funded. These figures need to be 
put into perspective. MM diagnoses represent one percent of the 
incidences of all cancers in the United States and two percent of the 
mortality statistics, yet, as seen above, these percentages are not 
represented equitably in terms of funding priorities. The fiscal year 
2000 budget for NCI will approach $3 billion. However, this is not 
intended to be an indictment; it is rather a call to action.
    MM has specific characteristics that are best investigated by those 
interested in the field. In order to achieve significant progress in MM 
research for the benefit of today's patients, substantial increases in 
funding and other incentives are needed. Today's patients are 
confronted with the reality of trying to outlive the three-to-five year 
averages they are told they have to live at diagnosis. Today's patients 
are confronted by the knowledge that 11,300 individuals--or 31 per 
day--died of MM last year. Their hopes for breakthroughs in research 
should not be limited or penalized because of past neglect by policy 
makers.
    We agree that precise research funding figures are difficult to 
determine with respect to MM. For example, NCI-sponsored research on 
the anti-angiogenesis agent, thalidomide, may be extremely relevant to 
MM but has not been included in the accounting of the MM portfolio. 
Therefore, the IMF supports granting NCI resources to maintain better 
data about research relevant to MM and to ensure that information is 
communicated throughout the medical and patient communities. The IMF is 
also very encouraged by the present NCI leadership and the forthright 
approach taken by the Director in soliciting the views of the MM 
community. That circumstance alone gives us hope.
                 myeloma research: opportunities needed
    The good news of cancer research--the recent, sustained reductions 
in overall cancer incidence and mortality rates--are due in large 
measure to the leadership taken by NCI. Unfortunately, MM patients 
cannot share in that good news yet. Incidence and mortality rates 
continue to rise. As NCI rightly stated in its responses to the House 
Appropriations Committee, ``Progress in understanding myeloma has been 
hampered by a lack of a suitable model for the disease.'' The IMF 
believes that NCI must take the lead in determining answers to this 
basic question.
    Among the most significant recent MM research has been the 
determination of how the myeloma cell behaves to induce bone 
destruction. The myeloma cell does not, as previously thought, destroy 
bone directly. Instead it upsets a natural balance of destruction and 
regeneration that takes place in all healthy bone tissue. It is 
analogous to the process of peeling skin being replaced by new skin; if 
that process is unbalanced, the consequences are readily apparent. 
Similarly, the myeloma cell creates an imbalance that stimulates the 
cells that induce normal bone destruction and inhibits those that 
replenish the bone.
    An understanding of this process has led to significant 
understanding of the role of bisphosphonates, a drug category that has 
been found to restore bone density, in the treatment of MM. The most 
popular drug on the market, which is administered intravenously monthly 
in an outpatient setting, is taken by the vast majority of MM patients 
as a treatment to strengthen and restore lost bone density. The 
bisphosphonate in the drug acts as an agent to regulate the abnormal 
function of regular bone destruction and regeneration. Studies of new 
bisphosphonates may improve the function of existing drugs by 100 
percent.
    A variety of other, potentially beneficial areas of research that 
NCI could support to increase its MM research portfolio include:
  --Myeloma Cell Biology and Function
  --Epidemiology for cancer prevention
  --Genetics to develop molecular cancer drugs
  --Viruses and possible links to cancer
  --Bone Disease treatments including bisphosphonates
  --Cell Activation to develop biologic therapies
  --Angiogenesis drugs to restrict tumor growth
  --Mechanisms to reduce drug resistance
  --High Dose Therapy Stem Cell Rescue for transplants
  --Immune Enhancement to develop vaccines
  --New Drug Development and combinations
               myeloma patients: the purpose of research
    Although it would be presumptuous to assume too many generalities 
without hard research, certain anecdotal trends among MM patients seem 
to recur with increased frequency. For example, since the mean age for 
all MM patients is 60, more and more patients are diagnosed just at the 
times in their lives when they expect to reap the rewards of their 
life's work. These are people who have lived and played by the rules, 
paid their taxes, raised their children to become responsible adults, 
contributed to their churches and communities, and planned responsibly 
for their retirements. They are overwhelming persons who have made 
goals and fulfilled plans throughout their lives. The feelings of 
helplessness they encounter with their diagnosis runs contrary to their 
normal assertiveness in attacking problems.
    Despite the fact no causes for MM are known, the suspected linkages 
between environmental exposures cause patients to live in tragic 
uncertainties that something related to their careers or choice of home 
may have had something to do with their illness. They wonder if by 
serving their country in foreign wars they may have exposed themselves 
to the things that cause MM. They wonder if that good job at the 
refinery may have raised their short-term income at the cost of their 
long-term health. They wonder if those afternoons spent planting the 
crops may have sown the seeds of an incurable disease. They wonder, 
with new research suggesting a possible linkage between MM and viruses, 
if they could possibly infect a loved one. They search in vain for 
definitive answers because the current state of research is too 
inconclusive to answer their questions.
    Another little understood fact about MM is that black Americans are 
at highest risk among the general population to get the disease. The 
average incidence rate in the general population is 4 per 100,000; 
black males and females are diagnosed at rates of 10.8 and 7.2 per 
100,000, respectively. MM is the ninth most common cause of death due 
to cancer in black Americans, representing 2.7 percent of cancer deaths 
in this population. Of the 59,939 black Americans who died of cancer in 
1994, 1,639 were attributable to myeloma, representing approximately 12 
percent of all myeloma deaths that year. As with all statistical 
groupings, black Americans become more susceptible to myeloma as they 
age, only more so. Black males and females over 65 have an incidence 
rate of 72.8 and 49.8 per 100,000, respectively. The same rate for 
white males and females, respectively, is 34.8 and 21.6. No reasonable 
studies exist to explain this difference.
                      recommendations and requests
    Mr. Chairman, we at the IMF rejoice in the recent advances in 
cancer research. But our patients and family members become more 
impatient for results about their disease the more they hear about 
advances in other fields. They also know the uncertainties about the 
disease point to real public policy concerns that will have to be 
addressed at some time certain. It cannot be avoided. And responding to 
those voices, the message of the IMF is clear: We believe the time has 
come to direct and increase funding for MM research at the federal 
level.
    The International Myeloma Foundation and its membership support 
inclusion of funding and legislative report language to grant NCI 
resources to:
    1. review its MM research portfolio;
    2. accelerate support of promising research;
    3. encourage new investigators to enter the field;
    4. convene an NIH-sponsored Consensus Conference to determine the 
state of MM research and promising opportunities, and to make 
recommendations to NCI for further research;
    5. include sufficient funds to implement the recommendations of the 
Consensus Conference;
    6. integrate epidemiological and occupational health research and 
data gathering activities relevant to MM to learn more about the 
molecular pathogenesis of the disease and its suspected agents;
    7. provide funding for existing projects approved but not funded by 
NCI that had at least 25 percent of the effort directed toward MM.
    Mr. Chairman, on behalf of the membership of the International 
Myeloma Foundation, I want to thank you for the opportunity to make our 
views known about the need for research about multiple myeloma.
    We will be pleased to submit any additional information the 
Committee may require or request.
                                 ______
                                 
  Prepared Statement of Duane Peters, Director of Communications and 
              Advocacy, Lupus Foundation of America, Inc.
    The Lupus Foundation of America (LFA) represents the 1.4 million 
Americans who suffer from lupus erythematosus, an incurable, 
widespread, and devastating autoimmune disease affecting mostly women, 
with the highest prevalence among women of color. The LFA is the 
nation's largest voluntary health agency exclusively serving people 
with lupus and their families. The LFA has 90 local chapters and 500 
community-based support groups throughout the United States. Our 
organization annual provides services to 200,000 individuals.
    We want to thank Chairman Specter, Senator Harkin and the other 
Members of the Subcommittee for your continued support of medical 
research through the National Institutes of Health. The 15 percent 
increase appropriated in fiscal year 1999 will increase funding for 
lupus related medical research from $38 million to $42 million. Even at 
this higher level, however, many promising studies will continue to go 
unfunded. The Lupus Foundation of America urges the Subcommittee to do 
whatever is necessary to keep the NIH budget on the path to double over 
five years, without causing undue harm to other important health 
related programs.
    The federal government does not have a firm grasp of how much it 
currently spends on direct outlays to provide services for people with 
lupus. Based on figures from a survey of its members, the Lupus 
Foundation of America estimates the federal government spends several 
billion dollars annually just to provide disability income payments for 
people disabled from lupus, in addition to the cost to provide health 
care through the Medicare and Medicaid programs. When you factor in 
lost employee productivity, lost wage tax revenue, and the economic 
burden placed on families, lupus extracts a significant toll on 
society. Of course, the personal devastation greatly outweighs the 
financial burdens caused by this disease.
    Lupus is an autoimmune disease that, for unknown reasons, causes 
the immune system to become hyperactive and attack the bodys own tissue 
and organs. Researchers recognize lupus as the prototypical autoimmune 
disease. Unlocking the mysteries of lupus opens the door of discovery 
for many other autoimmune diseases. Lupus and other autoimmune diseases 
are the fourth leading cause of disability in women.
    A market research study conducted for the Lupus Foundation of 
America estimated as many as 1 of every 185 Americans may have a form 
of lupus. This was not an epidemiological study. However, it 
demonstrated that lupus is a widespread disease affecting many 
Americans.
    At the present time, there is no cure for lupus, nor do researchers 
fully understand what causes the disease. We believe lupus has an 
underlying genetic basis with an environmental trigger causing disease 
activity. Recently a team of researchers funded by the NIH narrowed the 
search for the genes suspected of making individuals predisposed to 
lupus. This was a significant step forward and this work must continue.
    Unfortunately, we still do not know why lupus alternates between 
periods of remission and periods of disease activity, called flares. We 
do not know why the disease can remain mild in some individuals and 
become life-threatening in others. What we do know is that lupus 
devastates the lives of its victims and greatly impacts on the entire 
family. Nearly ten million Americans either have lupus or have an 
immediate family member or close relative with the disease.
    Ninety percent of victims are women. Hormonal factors may explain 
why lupus occurs more frequently in females than in males. However, we 
do not know if females are more vulnerable to lupus, or if males 
somehow are protected from the disease. This area of study needs more 
funding.
    Lupus is two to three times more likely to affect African 
Americans, Hispanics, Asians and Native Americans than Caucasian women. 
Lupus also appears to be more serious among African American women. An 
NIH funded study recently identified a gene that researchers believe 
causes lupus related kidney disease in African Americans. We need to 
better understand why lupus seems to have a greater impact on women of 
color. More research will answer this important question.
    We also know that lupus most often strikes women in their child-
bearing years between 15 and 44. This is one of the most devastating 
realities of lupus--it destroys the quality of life when those 
afflicted should be enjoying their best health.
    At the present time, there is no single test that can tell if a 
person has lupus. The disease is particularly difficult to diagnose 
because symptoms mimic other, less serious illnesses. It is not 
uncommon for a correct diagnosis to take years. The annual mean cost to 
provide medical care for a person with lupus ranges between $6,000 and 
$10,000. However, medical costs can run into the tens of thousands of 
dollars.
    Lupus is not an easy disease to treat or to live with. There is no 
cure for lupus. Therapies are available to control the symptoms of the 
disease in a majority of patients, however thousands still die every 
year from lupus-related complications. Many of the current therapies 
are highly toxic and can have serious side effects from long term use. 
For many patients, they must take even more medications to offset the 
complications caused by the medications taken to treat the disease. 
More basic and clinical research are needed to identify a cause, 
develop safer and more effective treatments, and ultimately, find a 
cure for lupus.
    The Lupus Foundation of America urges Congress to double NIH 
funding over a five year period. Please find a way to appropriate, in 
fiscal year 2000, another 15 percent increase for the National 
Institutes of Health, and the National Institute of Arthritis, 
Musculoskeletal and Skin Diseases. This is the institute primarily 
responsible for lupus research. Many scientific opportunities currently 
exist for studying lupus. Promising research proposals await funding--
studies that offer hope of finding a cure for this terrible disease.
    Additional funding is needed to bring lupus related research to a 
level sufficient to solve this urgent health problem. We know these 
funds will be used effectively by the National Institutes of Health to 
support quality research so lupus patients can live without pain, 
suffering and the fear of dying.
                                 ______
                                 
   Prepared Statement of Daniel Paul Perez, President, and Elizabeth 
       Conron, Founding Member, Facioscapulohumeral Society, Inc.
    Mr. Chairman, it is a great pleasure to submit this testimony to 
you today. My name is Daniel Paul Perez, of Lexington, Massachusetts. I 
am testifying today as President of the Facioscapulohumeral Society and 
as an individual who has this disorder. As a chief patient activist for 
the tens of thousands of individuals living with Facioscapulohumeral 
Disease (FSHD) in the United States, I will continue to argue the case 
of wanting to live life free from disease.
    My testimony is about the profound and devastating effects of 
Facioscapulohumeral Disease which is also known as FSH Muscular 
Dystrophy or FSHD, and the urgent need for the NIH funding for research 
on this disorder. In past years (1994, 1995, 1997, 1998) and again this 
year we will submit testimony before both House and Senate Committees. 
We maintain that the NIH and Congress could help cause a significant 
research and scientific discovery program that, with modest 
investments, would benefit hundreds of thousands of people worldwide.
    The FSH Society has previously informed the members of this 
Committee of the United States Congress of the need and rationale for 
research on FSHD. We have updated you on the most recent developments 
in clinical medicine with respect to FSHD. We have kept you abreast of 
the latest breakthroughs in the molecular genetics of the disease and 
given you insight into the difficulty of living a lifetime with this 
disease.
    Thanks largely to your efforts, Mr. Specter, the NIH research 
funding continues to grow to its current level of 14 billion dollars 
annually. Those efforts fuel our hope for promising research solutions 
for FSHD. I must in all candor express our frustration that promising 
FSHD research support and programs have yet to appear from the NIH, 
even in light of Congressional mandates and report language for such. 
While the NIH has seen a funding increase of 30 percent in the past 
decade, FSHD research through the NIH has not benefited at all. It is 
most disturbing that FSHD research funding has gone down, not up. Since 
the FSH Society first testified before Congress in 1994, FSHD research 
has decreased from between $300-500,000 to between $100-250,000. During 
this time, Congressional directives to the NIH regarding the state of 
FSHD research have been either ignored or responded to in an untimely 
manner. We have met with the NIH officials, testified before the 
Institute of Medicine Committee and taken the path indicated to put 
forth our goals. The situation has only gotten worse.
    FSHD is a neuromuscular disorder with autosomal dominant 
inheritance as well as a spontaneously occurring genetic mutation. It 
has an estimated frequency of one in twenty thousand (1/20,000). 
Autosomal dominant means that there is a 50 percent chance that a child 
will inherit the disease from an affected parent. The prevalence could 
be as much as three times the estimated frequency stated in the 
literature due to sub-clinical cases. The major consequence of 
inheriting this disease is that of a progressive and severe loss of 
skeletal muscle, with the usual pattern of initial noticeable weakness 
of facial, scapular and upper arm muscles and subsequent developing 
weaknesses of other skeletal muscles. FSHD can be extremely severe and 
in some forms can lead to an early death. FSHD can happen to any one of 
us.
    In 1997 the FSH Society, Inc. submitted testimony to Chairman John 
Porter before the U.S. House of Representatives and to Senator Arlen 
Specter before the U.S. Senate. We requested appropriations for 
research on FSHD and the need for Congressional language to the NIH to 
initiate research in this area.
    Report language was issued on July 22, 1997 stating: 
``Facioscapulohumeral disease--The Committee has heard compelling 
testimony about facioscapulohumeral (FSH) disease, which causes a 
progressive and severe loss of skeletal muscle. FSH research includes 
aspects such as molecular genetics, neurological function and muscular 
dystrophy involving multiple NIH Institutes. The Committee encourages 
NIH to take steps to stimulate research in this area and requests NIH 
to develop a plan for enhancing NIH research into FSH disease, 
including an assessment of whether an intramural research program in 
this area would be beneficial.''
    In 1998 the FSH Society, Inc. again submitted testimony to Chairman 
John Porter before the U.S. House of Representatives and to Senator 
Arlen Specter before the U.S. Senate requesting appropriations for 
research on FSHD and the need for Congressional language to the NIH to 
initiate research in this area.
    In 1998, the NIH finally responded to the 1997 Congressional 
language: ``The NIAMS and the National Institute of Neurological 
Disorders and Stroke (NINDS) support research on the many forms of 
muscular dystrophy including facioscapulohumeral disease (FSHD). In 
1990, scientists discovered the general location of the defective gene 
for FSHD on chromosome 4. However, much remains to be learned about the 
functional changes that accompany the disease and treatments. In April, 
1997, the NIAMS, NINDS and the NIH Office of Rare Diseases, along with 
the Facioscapulohumeral Society, held a FSHD conference designed to 
identify medical problems associated with the disease and to help focus 
research efforts by identifying new research opportunities. As the next 
step in an effort to increase research interest on FSHD, NIAMS and 
NINDS are developing a program announcement to follow up on 
recommendations from the April meeting. NIAMS, NINDS and the NIH Office 
of Rare Diseases will continue to work closely on encouraging FSHD 
research and to share relevant scientific advances.''
    One month after our 1998 testimony before the U.S. House of 
Representatives, the NIH issued a program announcement that covered, in 
part, FSHD. PA-98-044 is a response to the 1997 testimony and was over 
one year after our 1997 testimony. On March 20, 1998, the NIH issued PA 
Number: PA-98-044, titled: Pathogenesis and Therapy of the Muscular 
Dystrophies. PA-98-044 was sponsored jointly by the NINDS and the NIAMS 
and the support mechanisms for grants in this area were the 
investigator-initiated research project grant (R01) and the program 
project grant (P01). We were disappointed with the diffusion of our 
efforts by this program announcement covering not just FSHD but all of 
the Muscular Dystrophies.
    Additionally in 1998, we testified before the Institute of Medicine 
(IOM) responding to its four-part directive from Congress on priority 
setting for research at the NIH. We were forced to submit the IOM 
testimony from the back of the auditorium as it was not wheelchair 
accessible. We testified before the IOM Committee regarding the area of 
report language: ``. . . We find that the NIH response did not directly 
address the questions asked by the committee regarding the development 
of a plan for research in the area of FSHD research and regarding the 
possibility of intramural research in the area of FSHD research. The 
response we received did in fact dilute our efforts to accelerate and 
enhance research directly on FSHD by opening up a program announcement 
to all of the muscular dystrophies when in fact the request was for 
FSHD research.''
    In 1998 report language appeared in three sections of the U.S. 
House and U.S. Senate Appropriations budget under the NIH, the NIAMS 
and the NINDS. The report language is as follows:
    ``The Committee was pleased with the Institutes response to last 
year's request which encouraged NIH to stimulate research in the area 
of facioscapulohumeral disease (FSHD). However, the committee notes 
that NIAMS has not responded in developing a plan for enhancing FSHD 
research, and has not addressed the question of whether an intramural 
program in this area would be beneficial. Therefore, the Committee 
urges NIAMS to conduct a research planning conference in the near 
future in order to explore scientific opportunities in FSHD research, 
both intramurally and extramurally.''
    No response was heard from the NIH in 1998 for the 1998 language. 
FSHD researchers expressed disbelief both with the lack of funds and 
with the grants turned down. In 1998, the NINDS and the NIAMS funded no 
less than $100,000 and no more than $250,000 on direct FSHD research.
    This year, the NINDS asked for our ideas/participation on a draft 
document titled, ``Neuroscience at the New Millenium'' outlining 
priorities for NINDS 2000-2001. There was no mention of FSHD or any 
program that explicitly and suitably covered research on FSHD. My 
comments to Dr. Fischbach, Director of the NINDS, and Dr. Varmus, 
Director of the NIH, were:
    ``I have some comments after having reviewed your document 
`Neuroscience at the New Millennium--Priorities and Plans for the 
National Institute of Neurological Disorders and Stroke fiscal years 
2000-2001.' It is clear to me, if not completely black and white, that 
the formulation of the plan does not account for or even give 
consideration to FSHD and is not adequate with respect to FSHD.
    ``Of the greatest concern to me is no direct mention of FSHD in any 
of the sentences, clauses or paragraphs in the document I received, 
`Neuroscience at the Millennium,' despite strong Congressional report 
language on the issue. I do not see the scope expanding to cover 
diseases such as FSHD for which there is no known gene--and for which 
there may never be a gene per se. Where in this program is FSHD 
covered?
    ``The NINDS plan is not consistent with recent congressional 
mandates and report language which instruct NINDS for more involvement 
in FSHD research. Despite repeated meetings and work with the various 
institutes at NIH and assurances the responsibility and jurisdiction 
with respect to FSHD research is shared across institutes; NINDS does 
not reflect this in the current document.
    ``Both the House and Senate Appropriations Reports have language 
for this fiscal year and the last fiscal year that instructs and 
authorizes NINDS and NIAMS for plans and priorities with respect to 
FSHD.''
    In 1999 to date, the NINDS has only one newly issued grant in its 
portfolio that is directly titled for FSHD. When we called the NIAMS, 
the secretary who answered incorrectly informed us that the NIAMS does 
not do research in muscular dystrophy. In 1999, to date, the NIAMS has 
no grants issued with FSHD in their title. The NIAMS states that it is 
beginning the process of organizing the research conference for the 
Spring of 2000 but we have absolutely no indication of movement in this 
area. The NIAMS again, as it has done in past years, points us toward 
the Muscular Dystrophy Association (MDA) that has recently started gene 
therapy trials in limb-girdle muscular dystrophy. FSHD and limb-girdle 
muscular dystrophy are genetically and clinically different diseases. 
The NIH must understand that FSHD requires their attention. The NIH 
must understand that FSHD may be the only muscular dystrophy for which 
the putative gene has not been identified.
    FSHD researchers still express incredulity with the lack of funds 
and rejection of grants submitted by the top laboratories in the world. 
In 1999, the NIAMS currently has funded $0 (zero) on direct FSHD 
research.
    Mr. Chairman, it is heartbreaking that with FSHD being a primary 
neurological disease which is almost exclusively musculoskeletal in its 
effects, it can not gain support from the very Institutes that have the 
``neurology'' and ``musculoskeletal'' in their names.
    Mr. Chairman, we know that the Committee is overwhelmed in hearing 
from patient groups such as ours. We know that you trusted that the IOM 
and the NIH would set its priorities correctly. The truth is that we 
have come before Congress to testify year after year, given testimony 
in a wheelchair from the back of the room at the IOM, worked hard to 
have NIH take a more active, deliberate and responsible role and yet 
the NIH is not listening to the Congress, the scientific community and 
the patients on this issue.
    Mr. Chairman, this is a clear and disturbing trend. FSH Muscular 
Dystrophy has a prevalence of 5-10/100,000 persons, Amyotrophic Lateral 
Sclerosis (ALS), also known as Lou Gehrig's disease, has a prevalence 
of 1-2/100,000 persons and Charcot-Marie-Tooth (CMT Type 1, 2, 3) has a 
prevalence of 1/15,000 persons. Although FSHD may have a greater 
prevalence in the population than CMT and be similar in magnitude to 
ALS, it has received far, far significantly less from the NIH funding 
sources.
    FSHD research may have benefited indirectly from the NIH funding of 
the Human Genome Project. However, direct funding of FSHD research by 
the NINDS and the NIAMS at the NIH has been minimal. The total NIH 
funding for directly titled FSHD research currently for the fiscal year 
1999 (fiscal year 1999) is approximately three hundred thousand 
dollars.
    Mr. Chairman, this is clearly inadequate given the recent advances 
and the high likelihood of making significant progress in the very near 
future. With a budget of 14 billion dollars, The NIH is spending a 
miniscule amount on FSHD research. This tiny amount is utterly 
unconscionable and defies logic and reason given the prevalence of FSHD 
and the cost of doing molecular genetics research in 1999.
    Mr. Chairman, we ask the Subcommittee to earmark a dollar amount to 
FSHD research. We request that an amount of not less than five (5) 
million and not more than ten (10) million dollars be earmarked for 
FSHD research. We know that this Committee does not approve of 
earmarking. However, the record of five years indicates that the NIH 
ignores Congressional direction and scientific opportunities. 
Earmarking appears the only way to get the NIH's attention.
    The FSHD community demands that the Congress of the United States 
of America take action on funding research on FSHD. We are asking today 
for a promise to people living with FSHD, which commits to funding FSHD 
research in the following areas:
    1. Cloning the gene, characterizing the nature of mutations in the 
gene,
    2. Launching a major effort to understand the normal function of 
the FSHD gene and how its alteration causes the disease,
    3. Conducting natural history studies to provide a baseline for 
future therapeutic techniques, and
    4. Developing therapies based on information in 1, 2, and 3 above.
    Additionally, the FSHD community is requesting that Congress ask 
the NIH to research and make recommendations on the following:
    1. Increasing the number of applications received and accepted from 
investigators working on FSHD,
    2. Creating a Center of Research Excellence (CORE) for FSHD 
research,
    3. Enacting intramural NIH programs for FSHD research immediately,
    4. Extramural contract programs for FSHD, and
    5. Programs to attract and expedite extramural grant applications.
    The men, women and children who live with the daily consequences of 
this devastating disease are your friends, neighbors, fellow taxpayers 
and contributors to the American way of life. With an historical 88 
percent employment rate and an average educational achievement level of 
14 years, we personally bear our burden of the health care costs and 
training expenses to prepare for and maintain financial and personal 
independence.
    We appeal to you today to take our hard earned tax dollars 
commensurate with our numbers and valuable contributions to American 
Society. We urge the United Sates Government to allocate a proportion 
of our tax burden toward research on FSHD.
    This is the United States of America and, in a country as great as 
ours with all of its technical means and ability, it should be 
absolutely clear that the number one priority for individuals with FSHD 
and a commanding imperative for the Federal Government is to initiate 
and accelerate in any way possible, research on FSHD. With modest 
funding and a clear direction from Congress to the NIH to support 
research on FSHD significant progress can be made in conquering and 
eliminating this and other devastating diseases.
    Mr. Chairman, again, thank you for providing this opportunity to 
testify before your Subcommittee.
       living with facioscapulohumeral muscular dystrophy (fshd).
    As part of its ongoing mission, the FSH Society, Inc. feels that it 
is important for Congress and the NIH to fully understand the personal 
aspects of the disease and to offer help to individuals to empower 
themselves by educating others about this poorly understood disease. 
The following is presented by Elizabeth Conron, of Danville, 
California, who is testifying as the daughter and sister of members of 
the Board of Directors of the FSH Society, as a founding member of the 
FSH Society, and as an individual who has this disorder.
    ``I have FSHD. This diagnosis was a shock to my family and me since 
no one in our family had been previously recognized to have this 
disease. Diagnosed at Stanford University at the age of sixteen, I 
remained physically active until the age of twenty-two. I was a 
cheerleader, an avid snow skier, captain of my high school swim team 
and a competitive gymnast. Today, I can only walk short distances with 
assistance. This disease has affected most of the major muscle groups 
in my body. I can no longer flex my feet and my shins and calf muscles 
have atrophied to the point that I can only stand on my outside ankles. 
My thigh and hip muscles have weakened so that I can no longer arise 
from a sitting position without assistance and great body contortions. 
The arch in my back is so severe that I can form the letter C with it. 
I can no longer raise my arms above shoulder height. I have difficulty 
with shoulder dislocation. I can no longer feed myself with my right 
hand. The fingers in my right hand have weakened so severely that I now 
must learn to be left-handed. My once big and friendly smile has been 
replaced by crooked, weak lips and I cannot close my eyes at night 
without taping weights on my eyelids. People stare at my bizarre gait 
and body contortions. FSHD has replaced and is replacing my once strong 
and vital muscles with fat. My joints are swollen from the effects of 
FSHD and my bones with no muscles feel as though they are rubbing 
together. FSHD is a very painful and disabling disease for me.
    My family now knows that my sister and one of my brothers have FSHD 
as do my mother, two aunts and six cousins. We have watched our family 
deteriorate physically as one by one we surrender ourselves to 
wheelchairs. Nonetheless, our spirits remain strong and our mental 
capacity sharp. We are committed to being productive and contributing 
members in our communities.
    I earned a law degree in 1995, a feat that was truly a physical 
challenge for me. I stayed focused and worked hard, ultimately earning 
three American Jurisprudence awards for achieving the highest scores 
and I served as Student Body Secretary and then Vice President. When 
the elevator malfunctioned, I hated it. Fellow classmates would carry 
me upstairs in a piggyback fashion that humiliated me. I was forced to 
type my exams due to my weakened right hand. Typing was difficult--I 
used my left hand and only the index finger from my right hand to hit 
the keys. Despite the difficulties FSHD posed for me, I worked hard to 
make a contribution to the Law school.
    I have two children--four year old Caroline and two year old 
William. For me, the issue of children and FSHD has caused the greatest 
hardship. For fifteen years, my beloved and devoted husband and I 
agonized over the decision to have children. My desire to be a mother 
would not be denied. My children are adorable and I am a good mother. 
My inability to do so many things for and with my children causes me 
grief. When I take my son William to the park, I can not get into the 
sandbox with the play equipment due to the wheelchair. I miss the 
playgroups and birthday parties in other homes due to the lack of 
wheelchair accessibility. I can not be on a Ferris wheel with my 
children, supervise them in a swimming pool or walk along a beach with 
them. Simply combing Caroline's hair is a difficult task. I do not have 
the arm strength to pick up and hug my children. To receive physical 
affection, Caroline and William climb into my lap and I drape my arms 
around them.
    Caroline attends preschool and I volunteered to serve as a room mom 
and work in the classroom. I always look for opportunities to 
contribute to her well being. I was told that I could injure a child by 
rolling over a foot with my wheelchair and it was ``suggested'' that I 
not go into the classroom. I am the only mother prohibited from 
volunteering in the classroom.
    Often, I lie awake at night and worry about what new weaknesses I 
will have when I awaken in the morning. I pray that God will stop the 
progression of FSHD in my body so that I can attempt to adjust to my 
current level of weakness. As soon as I make the needed adaptations to 
my life, I weaken again. After thirteen years, we are forced to move 
since our current home with its narrow doors and hallways is not 
wheelchair accessible and I can no longer walk in my home. Falling has 
become a regular event. I have bruised, cut or bent most of my body 
from my numerous falls and felt it necessary to teach Caroline at age 
2\1/2\ to dial 911 and say, ``Mommy fell and she won't wake up.''
    I have seen others with FSHD whose basic functions such as bathing 
and feeding require assistance as well as the use of a wheelchair. Am I 
emotionally and spiritually strong enough to accept these challenges? I 
will have a meaningful life. I know that with no treatment or cure for 
FSHD, I will weaken and not be able to lift my arm from my lap. I will 
fight against this disease. If you had FSHD, would you not fight to 
defeat it too? In 1990, I along with a half dozen others with FSHD 
became the founding members of the national FSH Society. Today, our 
organization represents over 1,300 families. We are committed to 
advancing scientific and clinical research and providing support to 
families and individuals living with FSHD.
    Sometimes I watch able-bodied people move about so effortlessly and 
I wonder if they have any idea how fortunate they are to be able to do 
such basic things as walk, bend over to tie a shoe, or scratch their 
heads. I wonder, sometimes, if what is happening to me is just a bad 
dream. Inside this diseased body is a good person, a young woman who 
wants so much to be active again. I want to be able to walk with 
dignity, to catch William as he comes down a park slide, to button 
Caroline's dress, and to hold my husband in my arms. And I want my 
smile back.
    We are an incredible group of people with a passion to serve our 
communities and our country. Our drive is limited only by our physical 
weaknesses. I pray for your help. We need you to help us overcome the 
devastating effects of FSHD.
                                 ______
                                 
  Prepared Statement of Dr. Robert A. Altenkirch, Vice-President for 
                 Research, Mississippi State University
    Mr. Chairman and Members of the Subcommittee, thank you for the 
opportunity to submit this testimony regarding the National Institutes 
of Health Institutional Development Award (IDeA) program. I am Dr. 
Robert Altenkirch, and I am Vice-President for Research at Mississippi 
State University. I also serve as EPSCoR State Project Director in 
Mississippi. I submit this testimony on behalf of the Coalition of 
EPSCoR States.\1\
---------------------------------------------------------------------------
    \1\ Alabama, Arkansas, Idaho, Kansas, Kentucky, Louisiana, Maine, 
Mississippi, Montana, Nebraska, Nevada, North Dakota, Oklahoma, Puerto 
Rico, South Carolina, South Dakota, Vermont, West Virginia, and 
Wyoming.
---------------------------------------------------------------------------
    I would like first to express my gratitude to Senator Cochran for 
his strong support of the IDeA program and the related Experimental 
Programs to Stimulate Competitive Research (EPSCoR) in other federal 
agencies. Senator Cochran has been a strong advocate of IDeA because he 
understands the importance of enhancing our nation's biomedical 
research infrastructure by building the research capacity of 
Mississippi and the other IDeA states. We Mississippians greatly 
appreciate his leadership on IDeA and a whole host of issues important 
to Mississippi. We are proud to have him represent us in the United 
States Senate.
    IDeA was authorized by the 1993 NIH Revitalization Act (Public Law 
103-43). IDeA works to improve our nation's biomedical research 
capacity by enhancing the capability of states that have not yet 
substantially participated in the NIH's research endeavors. The NIH has 
identified the following states as eligible for IDeA funding: Alaska, 
Arkansas, Delaware, Hawaii, Idaho, Kansas, Kentucky, Louisiana, Maine, 
Mississippi, Montana, Nebraska, Nevada, New Hampshire, New Mexico, 
North Dakota, Oklahoma, Rhode Island, South Dakota, South Carolina, 
Vermont, West Virginia, Wyoming and the Commonwealth of Puerto Rico. 
IDeA acknowledges that nearly one-half of the states do not have an 
adequate R&D infrastructure in the biomedical sciences. Clearly this is 
not in the long-term best interest of our nation.
    IDeA is important, Mr. Chairman, because NIH research funds are 
extremely concentrated geographically. The 24 states that participate 
in IDeA received just 5.3 percent of NIH research funding over the 
fiscal year 1994-fiscal year 1998 period, while the top state alone 
received nearly three times that amount. The five most successful 
states combined received 48 percent of NIH funding over the same 
period.
    For example, according to data compiled by the Social Science 
Research Center at Mississippi State University, Mississippi received 
$16.2 million in NIH research funding in fiscal year 1998, compared 
with a national average of nearly $218 million per state. Alaska 
received just $2.6 million, Idaho received $1.4 million, and New 
Hampshire received $38.5 million--all a fraction of the national 
average.
    Mr. Chairman and Members of the Subcommittee, those figures are 
startling. Our country has embarked on a great endeavor: to increase 
substantially the NIH research budget--possibly even doubling research 
funding over the next five to seven years. Many scientists and Members 
of Congress support this worthy goal, and I applaud this important 
effort.
    But while I strongly support efforts to increase biomedical 
research funding, I think it crucial that all regions of the country 
participate in this effort--not just existing centers of excellence in 
a small handful of states. If we are to double research funding we need 
to enhance our research capacity by including a greater portion of the 
country in our research endeavors. The 24 IDeA states have fine 
research institutions that are home to many talented researchers. The 
institutions and researchers in these 24 states should play a 
significant role in our nation's effort to expand research capacity; 
they are crucial to any serious effort to improve our nation's ability 
to treat, cure and prevent disease.
    Yet under the current system these 24 states combined receive just 
5.3 percent of NIH research funding. Every region of the country has 
talent to contribute to our nation's biomedical research efforts--and 
every region of the country should have the opportunity to nurture and 
develop their talent pool into individuals and centers that can compete 
successfully for NIH funding and develop the biomedical R&D base across 
our nation.
    Mr. Chairman, the Congress provided the NIH with $15.6 billion in 
fiscal year 1999--an increase of some $2 billion from the previous 
year--and I understand the NIH will likely receive a significant 
increase this year. Yet out of that $15.6 billion, IDeA received just 
$10 million--$10 million to be shared by researchers in 24 states to 
develop the biomedical research capability of almost one-half of the 
nation.
    The Coalition of EPSCoR States is extremely grateful for the 
support this Subcommittee has provided IDeA thus far. Yet given the 
size of the NIH research budget and the need to enhance our nation's 
research capacity, we believe IDeA should be funded at a much higher 
level--a minimum of $100 million or more.
    Building the research capability of the 24 IDeA states is crucial 
toward the goal of increasing and enhancing our nation's research 
capability. On behalf of the Coalition of EPSCoR States, I thank the 
Subcommittee for the opportunity to submit this testimony.
                                 ______
                                 
     Prepared Statement of the National Alopecia Areata Foundation
    Mr. Chairman and members of the Senate Subcommittee on 
Appropriations for the Departments of Labor, Health and Human Services, 
Education and Related Agencies, thank you for the opportunity to submit 
testimony on behalf of those suffering from alopecia areata by the 
National Alopecia Areata Foundation.
    Alopecia areata is hair loss. For some people it is the loss of a 
small patch of hair on their head or some other place on their body. 
For others it is the loss of every hair on their head, and for still 
others it is the loss of every hair on their body. While it occurs in 
over 4 million people, the onset is usually between the ages of 5 and 
18. When it strikes it is usually met with shock and disbelief. Most 
physicians are unaware of its existence, and most people think that 
they are the only one in the world with the disease.
    The National Alopecia Areata Foundation (NAAF) is the largest 
organization in the world dedicated to finding a cure for alopecia 
areata. NAAF also provides the most money for research, having provided 
over one and one-half million dollars for research over the last ten 
years. The Foundation also provides for a network of support groups, 
publications on alopecia areata, and an annual convention to share 
information, and provide for ongoing support services. NAAF has a 
website that is open to all and a newsletter to provide information to 
people who are seeking information on treatments, ideas on coping, and 
just the simple knowledge that each individual is not alone.
    Each year the NAAF office receives phone calls and letters from a 
wide range of people. Some are confused and many are angry. It is not 
uncommon to have calls from people who are desperate for help. They 
have been shunned by their communities and are trying to hide. NAAF 
provides information and referrals.
    After the initial shock, of finding that their child has alopecia 
most parents usually start trying to find someone with the miracle 
cure. They are looking for the injection, the medicine, and the 
treatment that will restore their child to normalcy and stop the 
ridicule that they face. Unfortunately it doesn't exist. What we find 
is that the individual who has alopecia must learn to adapt to a very 
strange problem. They look different. For some people they are able to 
cope and grow. Unfortunately, the pain that is cause by the hair loss 
is the type of pain that is caused by how others react. This reaction 
is often times that people try to ignore them, and for children it can 
be that they will be teased, or in some schools that they are even 
isolated and/or put into a special education classroom. It is a 
psychological pain that can impact the development of a child's sense 
of who they are.
    Adults too suffer when they have this disease. 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, one parent called our national headquarters concerning 
her daughter who has alopecia areata and she was asking for help to 
stop the harassment that the daughter was experiencing at school. 
Another parent called who has alopecia areata and had just discovered 
that her daughter is developing it too. As this parent talked more 
about her child, she expressed the fears of many parents who have 
alopecia areata, they don't' want their children to suffer from the 
turmoil and fears that they had to endure. Both parents wanted to know 
what they should do or even could do.
    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.
    Our testimony is focused on medical research and the support that 
is needed to find the cause and cure of alopecia areata. Last year the 
foundation testified about the upcoming international research 
symposia. This year we can report that it has taken place. The reports 
that were presented were significantly different from a similar 
symposia held several years ago. Information on genetic functions, 
animal models and others point to a new level of research. We are now 
ready for a significant research program funded from NIAMS. As the 
largest private donor agency for alopecia areata, we have been funding 
research programs to build the base so that a larger and longer-term 
research program could be developed and funded. Now we think that the 
research community has developed the ability to spend the public's 
money well and effectively.
    We got to this stage by working as a partner with the National 
Institute for Arthritis, and Musculoskeletal and Skin Diseases (NIAMS). 
Our first level of work has been to develop the knowledge base and we 
have done this conference through the Third International Forum on 
Alopecia Areata, where NIAMS and NAAF co-sponsored the program and the 
dissemination of the results. As a result of this meeting we have a 
much clearer understanding of the disease, how it functions, and 
possible areas of research that could lead to a cure.
    We are very excited about what has been learned. We are looking to 
you to provide the resources to NIAMS to make this research possible. 
We like the others in the Coalition of Patient Advocates for Skin 
Disease Research believe that NIAMS needs more resources. The 
Coalition, which operates as a voluntary organization and as such, 
receives no public or private money provides an umbrella to over 21 
``lay'' skin groups. We suggest that you consider a 15 percent increase 
in the funding to NIAMS to bring its funding level up to $354 million. 
This would provide the institute with the ability to implement the 
results of the recent symposia on alopecia areata and other areas of 
need. It is also important to note that any research break through in 
any of the skin areas will likely have a positive impact on the 
research being done in other areas. We hope that you will consider this 
request.
    The foundation looks forward to continuing to work with the 
committee as you draft the fiscal year 2000 appropriations bill.
                                 ______
                                 
Prepared Statement of William R. Brinkley, Ph.D., President, Federation 
             of American Societies for Experimental Biology
    Mr. Chairman, Mr. Harkin, Members of the Subcommittee: I am Dr. 
William Brinkley, Vice President for Graduate Sciences and Dean of the 
Graduate School of Biomedical Sciences at Baylor College of Medicine in 
Houston, Texas. I am a cell biologist who conducts research on cell 
division and genomic instability in tumor cells. I serve this year as 
the President of the Federation of American Societies for Experimental 
Biology, FASEB, the largest organization of life scientists in the 
United States. Founded in 1912, FASEB is comprised of 17 societies with 
a combined membership of more than 56,000 researchers.
    It is in my role as FASEB president that I appear before you today 
to ask that you and the other members of this subcommittee continue 
your leadership and support of the NIH doubling effort begun last year. 
The potential of science to address the challenges of disease, death 
and premature disability has never been greater and we ask specifically 
that you work with your colleagues in the Senate to find the $2 billion 
increase to fund year II of this effort. FASEB continues to believe 
that this investment is fully justified, that it can be responsibly 
managed and that it represents the best hope for reducing the disease 
burdens which still plague so many Americans and their families.
    Mr. Chairman, a half-century of sustained public investment in the 
National Institutes of Health has given the United States the world's 
preeminent medical research enterprise. Through a system of 
competitively awarded grants and in-house research, NIH has fostered 
the development of a biomedical research initiative that is the envy of 
the world. Seventy-five of the 118 Nobel laureates in physiology or 
medicine awarded since 1945 have been Americans. More than two-thirds 
of these scientists have had their research supported by NIH.
    Scientific investigation supported by NIH has given rise to the 
biotechnology industry and has fueled the development of new 
therapeutics by the pharmaceutical industry. More importantly, our 
investment in biomedical research has rewarded the nation with 
discoveries that have improved health and reduced human suffering from 
diseases. Let me cite just four recent examples of the critical results 
derived from prior investment in the NIH:
  --NIH-funded researchers have uncovered a mechanism by which common 
        influenza (flu) viruses turn deadly. Normally, influenza A 
        viruses remain confined to the respiratory tract because they 
        need a special enzyme to attack body cells. This enzyme, called 
        protease, is found only in respiratory tract cells. 
        Investigators found, however, that some influenza A viruses can 
        enter cells by using a different enzyme (plasmin), which is 
        more common in human cells. This finding should make it easier 
        to predict the potential for a newly emerging influenza A virus 
        to cause a pandemic. In addition, it suggests new ways of 
        heading off such outbreaks.
  -- Scientists supported by the NIH have sequenced the complete genome 
        of Treponema pallidum, the bacterium that causes syphilis. The 
        new genetic map should make it easier for scientists to fill 
        the gaps remaining in our ability to detect, treat, and prevent 
        the disease.
  --NIH-funded researchers using ``knockout'' mice that lack the genes 
        for transporting dopamine or serotonin (chemicals by which the 
        brain's cells communicate with each other) found that cocaine's 
        effect on the brain does not depend on either of these 
        neurotransmitters. This finding implies that there are 
        additional target sites in the brain for developing successful 
        therapies for cocaine addiction.
  --The Food and Drug Administration has given its approval for the 
        manufacture of a new and safer diptheria-tetanus-acellular 
        pertussis vaccine. The enhanced safety levels derive from the 
        fact that the vaccine uses only a single pertussis antigen and 
        immunization can be achieved with fewer side effects than was 
        possible with older, multi-antigen immunizations.
    These are just a few examples of what previous investment has 
produced. The future looks even brighter. As the U.S. continues to 
expand its investment in biomedical research, the practice of medicine 
during the next two decades will change dramatically. Rooted in a deep 
understanding of how genes guide normal and abnormal molecular 
function, physicians will use new biomedical and informatics 
technologies to detect more precisely the risk and presence of disease 
in order to determine the most effective therapy for each individual 
patient.
  --To meet these emerging opportunities and needs in biomedical 
        research, FASEB recommends $17.9 billion for the NIH, an 
        additional $2.3 billion, a 15 percent increase, over the 1999 
        appropriation level.
                         policy recommendations
    In addition to its efforts in support of more funding for 
biomedical research, FASEB and its member societies have an abiding 
interest in the future directions of medical research, in the decisions 
about how increased investment should be structured. In March of 1998, 
a group of working scientists representing FASEB's member societies met 
to examine the long-term needs for investment in life sciences 
research. Their report, Molecular Medicine 2020: A Vision for the 
Future of Medical Research and Human Health, provides a consensus view 
of the steps that we believe must be taken to capitalize on today's 
research opportunities and to transform medicine.
    As part of its continuing effort to reach the goals and objectives 
of Molecular Medicine 2020, FASEB presents the following 
recommendations for NIH in fiscal year 2000.
Priority setting
    While the system of merit review and prioritization has proven 
highly successful, science is inherently dynamic. We applaud the spirit 
with which NIH has been examining, testing, and improving its system 
for reviewing grant applications.
    Although merit review alone can guide decisions about which 
projects are most promising within a given field of study, at any 
moment different fields of biomedical research vary in the 
opportunities they present for achieving significant advances. Just as 
decisions about which grants to fund within an area of inquiry depend 
on the prospects for achieving advances in the near term, decisions 
about how to allocate funds across fields of inquiry should reflect the 
opportunities and needs for improving health.
    FASEB believes that in prioritizing the allocations of scarce 
funding policy-makers and science managers should consider the burdens 
imposed by various human diseases. We welcome the efforts of NIH to 
receive input from relevant patient communities through mechanisms such 
as the new Council of Public Representatives recently created by the 
NIH in response to recommendations of the Institute of Medicine. The 
practice of medical research, like the practice of medicine itself, is 
a partnership. Human health will be advanced most effectively when 
patients, health care providers, medical researchers, and the public 
have opportunities for input into research priorities.
  --FASEB continues to support the NIH system of competitive merit 
        review and the ongoing efforts by NIH to maintain the vibrancy 
        and relevance of this process to newly developing questions and 
        opportunities.
  --FASEB supports the continued reliance on scientific opportunity as 
        the principal determinant of NIH research and training 
        programs.
  --FASEB also supports efforts of the NIH priority-setting process 
        that includes consideration of disease burden and the inclusion 
        of input from a broad spectrum of constituencies, including the 
        general public and relevant patient, scientific, and medical 
        communities.
Planning
    During the past year, while a bipartisan majority of the Congress 
have supported a multiple year buildup of this country's life science 
research enterprise, some observers have expressed skepticism as to 
whether the science enterprise can effectively absorb such a large 
infusion of resources in a five-year period. FASEB does not share this 
skepticism and believes the national biomedical research enterprise can 
effectively use the resources envisioned by Congressional leaders who 
support a doubling of the NIH budget over five years.
    NIH has already begun a planning process that will ensure that new 
public resources are used effectively and wisely. We believe that these 
efforts should be expanded. Initially, NIH central leadership deferred 
to the institutes for planning efforts, but the agency is now 
deliberately moving to develop NIH-wide plans where appropriate. While 
avoiding micromanagement and top-down planning, FASEB believes that NIH 
leadership should continue to identify crosscutting problems, develop 
strategies for dealing with these issues, and communicate these plans 
to the Congress and the public. In addition we have made the following 
recommendation related to NIH planning:
  --FASEB encourages NIH to more effectively communicate its planning 
        activities to Congress, the media, and the public.
  --FASEB supports the approach of decentralized management of science.
  --FASEB encourages NIH to move forward with its planning efforts that 
        relate to crosscutting issues. Specifically, NIH should address 
        matters that are interdisciplinary and inter-institute in 
        nature, and that span the extramural and intramural programs of 
        the agency. Examples include training, infrastructure, and the 
        adequacy of current funding mechanisms.
  --In carrying out its planning activities, FASEB recommends that NIH 
        involve both the basic and clinical science communities in 
        identifying issues and developing solutions.
Patient-oriented research
    Patient-oriented research is a crucial stage in the translation of 
basic research findings into improved health care for America's 
citizens. These studies are essential for translating the findings of 
basic research into effective therapies, diagnostics, and prevention 
strategies. Similarly, new knowledge provides a means of strengthening 
population-based health, especially in the areas of epidemiology and 
health services.
    But, patient-oriented research is now at a critical juncture. It 
has historically been supported by resources derived indirectly from 
clinical practice. With increased pressure to contain costs from 
managed care and other providers, however, this source of funding has 
largely disappeared. As a result of this change and competing demands, 
physicians cannot devote the same amount of time and attention to 
patient-oriented research, which can no longer be maintained at levels 
where it can fully and effectively exploit all of the emerging 
opportunities.
  --FASEB recommends increased support for high-quality, hypothesis-
        driven, patient-oriented research through conventional R01 and 
        other investigator-initiated awards, and urges the appropriate 
        involvement of physician-scientists in the review and selection 
        process.
  --FASEB also recommends increased funding for the infrastructure of 
        patient-oriented research programs and centers.
Physician-scientists
    Physician-scientists play a unique role in biomedicine by studying 
patients and their diseases. They take their observations from the 
bedside into the laboratory, make basic discoveries, and translate 
these discoveries into new methods for prevention, diagnosis, and 
treatment of disease. This combination of clinical and scientific 
skills is essential for improving the understanding and treatment of 
human disease.
    But factors constraining patient-oriented research have also had a 
profoundly negative impact on the ranks of physician-scientists. The 
next generation of clinically trained researchers is at risk without 
support for training and career development. If this is allowed to 
occur, we will have a drastically reduced capacity for translational 
research, loss of a critical source of research insights, and 
diminished ability to train future generations of medical students in 
the context of scientific method.
  --FASEB believes that training research-oriented physicians is 
        critical to the future of biomedicine.
  --FASEB recommends that the support of research training for 
        physician-scientists adequately cover salaries of trainees, 
        training costs to mentors, and institutional indirect 
        (facilities and administrative) costs.
  --FASEB recommends increased support for programs that specifically 
        promote rigorous training opportunities for medical students 
        with an interest in research.
  --FASEB also recommends increased funding of training grants and 
        individual NRSAs for two years of research training for 
        physicians. This funding should also cover graduate course work 
        when appropriate. Physicians engaged in such training should 
        receive a stipend equivalent to that for clinical training; 
        other support should be similar to that provided to Ph.D. 
        postdoctoral trainees.
  --FASEB supports implementation of mechanisms to remove disincentives 
        to the career development and retention of physician-
        scientists. These include debt forgiveness for medical 
        education costs, and the elimination of salary caps that keep 
        extramural physician salaries below the salary scales for 
        comparable physician-scientists in the NIH intramural program.
New technologies for research: advanced technology, instrumentation, 
        and national research resources
    The $67 million spent annually by the federal government to run 
these centers has not relieved concerns regarding the chronic 
underfunding of these resources. They are critical to maintaining the 
forefront in existing key research technologies that R01 investigators 
have come to rely on. Additional resources would increase opportunities 
for investigators to use shared technological resources including the 
development of ``collaboratories'' or ``laboratories without walls,'' 
which would enable the remote access of the resource centers via the 
Internet or by encouraging natural interconnectivity of research 
resources with clusters of P01s focused on particular large-scale 
problems.
    The National Center for Research Resources/Biomedical Technology 
program provides three mechanisms for support in this arena: R01, P41, 
and S10 grants. Each program plays a unique role in the development and 
acquisition of technology. R01s are needed to conceptualize and 
innovate; P41s are necessary to develop cutting-edge, expensive, and 
scarce technology, make it work, and make it available to the research 
community. The S10 program permits groups of researchers to share in 
expensive, commercially available, off-the-shelf instruments.
  --FASEB recommends that funding for the shared biomedical technology 
        resource program (P41) be increased from its current level of 
        $67 million to $167 million.
  --FASEB recommends increasing the funding for support of shared 
        instrumentation to $80 million.
  --FASEB recommends a new expenditure by NIH of at least $250 million 
        annually for the sustained development of the next generation 
        DNA sequencing technologies and of breakthrough technologies 
        for elucidating the biological function of proteins. The system 
        of shared technology centers funded at 64 cities around the 
        United States is a critical resource for taking advantage of 
        the knowledge emerging from research on the human genome.
  --FASEB recommends that NIH expand its commitment to foster and 
        support technological developments.
The burden of federal regulations
    Excessive federal regulations consume valuable resources and divert 
researchers' energies from their work. Some of these regulations were 
originally designed for purposes unrelated to research, and their 
application to academic laboratories has had unanticipated and costly 
consequences for scientists. Ultimately, such regulations undermine the 
scientific progress which, in many cases, is being funded by the 
federal government.
  --FASEB supports NIH's ongoing study of ways to reduce the 
        unnecessary burden that federal regulations impose on 
        researchers. We hope that the recommendations of the study 
        receive widespread consideration.
                               conclusion
    Other recommendations that FASEB believes will maximize the 
public's return on investment from NIH funding are included in the 
formal report of our fiscal year 2000 Funding Consensus Conference, 
which has been sent to all members. We hope you will have time to 
review the full report.
    In conclusion, Mr. Chairman, I want to restate that while each 
sector of the research establishment brings its own different 
perspective to this debate, all are here with one overarching goal--
progress against the diseases and disabilities that continue to afflict 
the American people and the people of the world. While FASEB's members 
are practitioners of molecular biology, biochemistry, anatomy, and 
other basic sciences, their cause is to apply their science to the 
reduction of human suffering caused by disease. As I consider others 
submitting statements for the record to this Subcommittee, families 
fighting Sudden Infant Death Syndrome, juvenile diabetes, breast 
cancer, AIDS or Muscular Dystrophy, I know that these groups represent 
the causes that the biomedical science community is committed to.
    The basic message of these patient advocates and the scientists 
whom I represent is 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 15 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.
                                 ______
                                 
   Prepared Statement of One Voice/the American Coalition for Abuse 
                               Awareness
                                 issue
    Whether the National Institutes of Health are justified in 
proposing fiscal and developmental cutbacks in research programs and 
empirical initiatives focusing on child sexual abuse and later 
physiological, neurobiological and psychological consequences for adult 
survivors.
                               conclusion
    This is not an area which can afford less attention or resource 
allocation. Here, at issue is the health and welfare of children and 
adults, and the significant negative impact that instances and patterns 
of sexual abuse have on their lives. The Child Abuse Prevention and 
Treatment Act became law in 1974, and ``[s]ince that time, the Federal 
government has served as a catalyst to mobilize society's social 
service, mental health, medical, educational, legal, and law 
enforcement resources to address the challenges in the prevention and 
treatment of child abuse.'' \1\ The numerous federally sponsored child 
welfare programs underscore Congress' recognition of the need to 
protect the nearly 70 million children under the age of eighteen in 
this country.\2\ Of the one million children determined to be victims 
of abuse or neglect in 1996, approximately 120,000 were sexually 
abused.\3\
---------------------------------------------------------------------------
    \1\ Kathleen Coulborn-Faller, U.S. Dep't of Health and Human 
Servs., Child Sexual Abuse: Intervention and Treatment Issues vii 
(1993).
    \2\ U.S. Dep't of Com. Bureau of the Census, PPL-57 Resident 
Population Estimates by Age, Sex, and Race, Mar. 1, 1997 (hereinafter 
``Census'').
    \3\ U.S. Dep't of Health and Human Servs., Child Maltreatment 1996: 
Reports From the States to the National Child Abuse and Neglect Data 
System xi (1996) (hereinafter ``Child Maltreatment 1996'') (based on 
reports received and referred for investigation by Child Protective 
Services in 1996).
---------------------------------------------------------------------------
    Acts of sexual abuse and assault have reached frightening numbers: 
\4\ current authorities estimate that one in every three girls and one 
in four boys will be victims of unwanted sexual touch or abuse before 
the age of eighteen.\5\ Despite our cognizance of this injustice, there 
persists an outrageous number of substantiated child sexual abuse cases 
in the United States: in 1996 alone, this number was 119,397.\6\ These 
numbers, however, reflect only those cases reported; not all children 
report abuse,\7\ and, tragically, are deprived of safety and well-
being.
---------------------------------------------------------------------------
    \4\ Center for the Future of Children, Sexual Abuse of Children, 4 
The Future of Children 2 (Summer/Fall 1994).
    \5\ Coulborn-Faller, supra note 1, at 16-17.
    \6\ Child Maltreatment 1996, supra note 3, at 2-7.
    \7\ The National Victim Center Handbook, 1991, reported that 90 to 
95 percent of all sexual abuse cases go unreported to the police. See 
also Coulborn-Faller, supra note 1, at 16-17. The National Committee to 
Prevent Child Abuse reports that, in 1997, there were 223,650 reports 
of child sexual abuse.
---------------------------------------------------------------------------
    We know that child sexual abuse exacts an enormous toll on the 
cognitive and emotional development of the child. Studies show that 
child sexual abuse is consistently coupled with difficulties in school, 
in relating to peers, and in sleeping; in later childhood, these 
afflictions can evolve into eating disturbances, such as bulimia and 
anorexia nervosa, social regression, and self-destructive or suicidal 
behavior.\8\ In addition, seventy to eighty percent of sexual abuse 
survivors report excessive use of drugs or alcohol; women who reported 
childhood rape were three times more likely to become pregnant before 
the age of eighteen.\9\
---------------------------------------------------------------------------
    \8\ Coulborn-Faller, supra note 1, at 27-28.
    \9\ Center Against Sexual Abuse Statistical Report 1997 
(hereinafter ``CASA'').
---------------------------------------------------------------------------
    Daily, more is being learned of the physiological consequences of 
child sexual abuse. Doctors and researchers at esteemed medical 
institutions such as Harvard and Yale universities have observed a 
strong correlation between child sexual abuse and a disruption to the 
normative function of stress and sex hormones in the body.\10\ Sexual 
abuse survivors have been found to have a significantly diminished 
long-term capacity for short-term memory,\11\ an increased 
vulnerability to temporal lobe epilepsy,\12\ and weakened immune system 
function,\13\ among other disorders;\14\ recently, Discover magazine 
published a report supporting these findings.\15\ The long-term 
ramifications of these conditions impact heavily on how child sexual 
abuse should be perceived.
---------------------------------------------------------------------------
    \10\ J. Douglas Bremner, et al., Magnetic Resonance Imaging-Based 
Measurement of Hippocampal Volume in Posttraumatic Stress Disorder 
Related to Childhood Physical and Sexual Abuse--a Preliminary Report, 
41 Biol. Psychiatry 23-32 (1997).
    \11\ Id. at 26 (reporting a 12 percent deficit in hippocampal 
volume in adult survivors of child sexual abuse).
    \12\ Shannon Brownlee, The Biology of Soul Murder, U.S. Online News 
(Nov. 11, 1996)  (citing 
the findings of Martin H. Teicher, Ph.D., M.D., of tiny seizures 
occurring in various sectors of the brain in adult survivors of child 
sexual abuse).
    \13\ Tori DeAngelis, New Threat Associated With Child Abuse, APA 
Monitor (Apr. 1995) (citing Frank Putnam, Jr., of the National 
Institute of Health's Laboratory of Clinical Psychology, who has 
evidenced high levels of antibody associated with weakened immune 
system function in adult survivors of child sexual abuse).
    \14\ See, e.g., Minouche Kandel & Eric Kandel, Biology of Recovered 
Memory, Discover Magazine 32 (May 1994); Elliot Stellar & Bruce McEwen, 
Stress in the Individual, 153 Arch. Intern. Med. 2093-101 (Sept. 27, 
1993).
    \15\ Robert Sapolsky, Stress and Your Shrinking Brain, Discover 
Magazine 116 (Mar. 1999).
---------------------------------------------------------------------------
 background and interest of one voice/the american coalition for abuse 
                               awareness
    We are disconcerted by and have evidence of NIH/NIMH's apparent 
lack of sensitivity towards the issue of child sexual abuse. In August 
of 1998, NIH/NIMH presented ``The Three Faces of Eve,'' in conjunction 
with the Science and Film Festival. To facilitate discussion on the 
issue of Dissociative Identity Disorder (``DID''), Festival directors 
went outside the Institutes and invited Dr. Paul McHugh. DID condition 
has been closely associated to early sexual abuse.\16\ It is our 
contention, and indeed, our concern, that Dr. McHugh's documented 
agenda against further exploration into and study of DID stems from a 
disavowal of the trauma experienced by sexual abuse survivors, and a 
complete reluctance to believe current scientific evidence of the 
prolonged sequelae of child sexual abuse. The close association between 
child sexual abuse and DID justifies the interpretation of this 
reluctance as a concomitant hesitancy to believe current data of the 
pervasive nature of child sexual abuse itself.
---------------------------------------------------------------------------
    \16\ Etzel Carde--a, Dissociation Disorders, in Adult 
Psychopathology and Diagnosis 384-408 (Samuel M. Turner & Michel Herson 
eds., 3d ed. 1997); Philip M. Coons, Confirmation of Childhood Abuse in 
Child and Adolescent Cases of Multiple Personality and Dissociative 
Disorder Not Otherwise Specified 182 J. Nervous & Mental Disease 461-64 
(1994).
---------------------------------------------------------------------------
    More alarming than Dr. McHugh's position was that of the 
Institutes. In response to the invitation of Dr. McHugh, One Voice/ACAA 
initiated a letter writing campaign to involve the medical and 
scientific communities in raising the awareness of the Institutes with 
regard to DID and other mental health concerns of those suffering the 
after-effects of long-sustained childhood abuse. Several nationally 
recognized organizations, including the International Society for the 
Study of Dissociation and Yale University School of Medicine's 
Departments of Diagnostic Radiology and Psychiatry, joined us in 
writing to protest the actions taking by the Institutes.
    The choice to present Dr. McHugh indicates a move by Institute 
officials to reduce the attention paid to child sexual abuse as a 
public health issue. This is further evidenced by the 1999 dissolution 
of the NIH/NIMH's Developmental Traumatology Unit. Instrumental in our 
understanding of the science of trauma, this center has been at the 
forefront of tracing the developmental effects of child sexual abuse 
for years. Yet, this year, the Institutes terminated the Unit. Again we 
find ourselves in disagreement with the policy perspective the 
Institutes have chosen to adopt. Many of the same individuals who 
supported our effort his summer now support our position that any 
reduction by the Institutes in funding directed toward child sexual 
abuse is in opposition to current medical findings that adverse 
childhood experiences have a substantial and significant impact on the 
health of American society.
                   a definition of child sexual abuse
    Despite consistent findings that between eleven percent and sixty-
two percent of women,\17\ and between three percent and thirty-nine 
percent of men \18\ endure some form of child sexual abuse, and despite 
the formal recognition of its negative impact on society,\19\ child 
sexual abuse remains an issue seldom discussed and seldom clarified. 
The term ``child sexual abuse'' covers a wide range of acts. It 
encompasses ``any sexualized behavior that harms or traumatizes a 
child,'' \20\ and especially ``the exploitation of a child for a sexual 
purpose by another person.'' \21\ Experts have come to recognize that 
child sexual abuse may be ``overt or covert,'' where
---------------------------------------------------------------------------
    \17\ Diana E.H. Russell, The Incidence and Prevalence of 
Intrafamilial and Extrafamilial Sexual Abuse of Female Children, 7 
Child Abuse & Negl. 133-46 (1983). See also D. Finkelhor & G. Hotaling, 
Sexual Abuse in the National Incidence Study of Child Abuse and 
Neglect, 8 Child Abuse & Negl. 22-32 (1984).
    \18\ Finkelhor & Hotaling, supra note 17. See also G. Kercher & M. 
McShane, The Prevalence of Child Sexual Abuse Victimization in an Adult 
Sample of Texas Residents, 8 Child Abuse & Negl. 495-502 (1984).
    \19\ Bremner, supra note 10, at 23 (citing D. Finkelhor, A 
Sourcebook on Childhood Sexual Abuse (1986) (finding that rates of 
child sexual abuse are currently estimated at 11-62 percent in women, 
and 3-39 percent in men)). See also Child Maltreatment 1996, supra note 
3.
    \20\ Charles L. Whitfield, M.D. Traumatic Amnesia: The Evolution of 
Our Understanding From a Clinical and Legal Perspective, 4 Sexual 
Addiction & Compulsivity 7 (1997).
    \21\ Carole S. Miller, When You Tell, Does the Hurt Go Away?: The 
Impact of Theatre & Education in Sexual Abuse Prevention, 8 Stage of 
the Art: J. Am. Alliance for Theatre & Educ. 13 (Summer 1996).
---------------------------------------------------------------------------
        [o]vert sexual abuse includes any inappropriate touching of a 
        child's genitals or breasts and intercourse or penetration--or 
        touching--with adult genitals, finger or fingers, or another 
        object. In covert sexual abuse there is often a lack of 
        physical contact . . . . It may include:telling a child dirty 
        jokes, inappropriate nudity, preoccupation with a child's 
        genitals or with one's own genitals with the child, 
        preoccupation with a child or adolescent's sexuality, telling a 
        child or adolescent of one's own sexual escapades, any 
        preoccupation with talking about sexual behaviors or showing a 
        child explicit sexual pictures, flirting with the child, and 
        the like. Covert sexual abuse nearly always accompanies the 
        overt.\22\
---------------------------------------------------------------------------
    \22\ Whitfield, supra note 20, at 7 (citing C.A. Courtois, Healing 
the Incest Wound: Adult Survivors in Therapy (1989); J.N. Briere, Child 
Abuse Trauma: Theory and Treatment of the Lasting Affects (1992)).
---------------------------------------------------------------------------
    Thus, children who are being or who have been sexually abused 
experience a wide range of reactions to the abuse. These will be 
outlined in the next two sections.
 public health concerns: social ramifications of child sexual abuse in 
                          children and adults
    Major indicators of child sexual abuse are observed in almost all 
facets of a child's life.\23\ In school, teachers may notice a child's 
inattention, disruptive behavior, or other changes in demeanor that 
often result in falling grades.\24\ Parents may notice a loss of 
appetite, evidence of eating disorders,\25\ increased nightmares, 
depression,\26\ anxiety,\27\ or other nonsexual behavioral changes.\28\ 
Frequently, children being abused will polarize, either acting out at 
others, or withdrawing into themselves.\29\ In the instance when the 
child acts out at another, that acted upon child may then be subject to 
similar feelings; sadly, his subsequent insecurity and depression are 
the direct result of the abused child's own insecurity and 
depression.\30\ In 1993, the American Psychiatric Association stated 
that ``abuse tends to produce an inappropriate conditioning of sexual 
responsiveness, the shattering of a child's trust and an enduring sense 
of stigmatization and powerlessness.'' \31\
---------------------------------------------------------------------------
    \23\ Videotape: Once Can Hurt a Lifetime (Marilyn Van Derbur for 
One Voice, 1994).
    \24\ S.D. Peters et al., Prevalence, in A Sourcebook on Child 
Sexual Abuse 15-59 (D. Finkelhor, ed., 1986).
    \25\ J. Douglas Bremner et al., Deficits in Short-Term Memory in 
Adult Survivors of Childhood Abuse, 59 Psychiatry Res. 97, 98 (1995) 
(citing R.C. Hall et al., Sexual Abuse in Patients With Anorexia 
Nervosa and Bulimia, 30 Psychosomatics 73-79 (1989); R.L. Palmer et 
al., Childhood Sexual Experiences With Adults Reported by Women With 
Eating Disorders: An Extended Series, 156 Brit. J. Psychiatry 699-703 
(1990)).
    \26\ Bremner, supra note 25, at 98 (citing J. Briere, et al., 
Symptomatology in Men Who Were Molested As Children: A Comparison 
Study, 58 Am. J. Orthopsychiatry 457-61 (1988); C. Swett, Jr., et al., 
Sexual and Physical Abuse Histories and Psychiatric Symptoms Among Male 
Psychiatric Patients, 147 Am. J. Psychiatry 632-36 (1990)).
    \27\ Id.
    \28\ National Ctr. on Child Abuse and Neglect, U.S. Dep't of Health 
and Human Services, Child Sexual Abuse: Intervention and Treatment 
Issues (1993).
    \29\ Van Derbur, supra note 23.
    \30\ Id.
    \31\ American Psychiatric Ass'n, Diagnostic and Statistical Manual 
of Mental Disorders (4th ed. 1994).
---------------------------------------------------------------------------
    The APA also found subsequent symptoms in adult survivors of child 
sexual abuse, as have other studies:

          [F]rom a detailed analysis of 38 clinical studies (on 2,774 
        child sexual abuse survivors compared to 8,388 controls who 
        were not sexually abused) meeting rigorous research criteria, 
        Neumann and colleagues \32\ found that there was a significant 
        association between a sexual abuse history and adult symptoms. 
        These symptoms included: anxiety, anger, depression, 
        revictimization, self-mutilation, sexual problems, substance 
        abuse, suicidality, low self-esteem, interpersonal problems, 
        obsessions and compulsions, dissociation, post-traumatic stress 
        responses, and somatization (physical problems).\33\
---------------------------------------------------------------------------
    \32\ D.A. Neumann et al., The Long-Term Sequelae of Childhood 
Sexual Abuse in Women: A Meta-Analytic Review, 1 Child Maltreatment 6-
16 (1996).
    \33\ Whitfield, supra note 20, at 2.

    One such study, conducted by the Centers for Disease Control's 
National Center for Chronic Disease Prevention and Health Promotion, is 
known as the ``Adverse Childhood Experiences (ACE) Study.'' \34\ Using 
over nine thousand subjects in conjunction with Kaiser Permanente's San 
Diego Health Appraisal Clinic, the study linked childhood abuse to a 
four to twelve-fold increase of health risk for alcoholism, drug abuse, 
depression, and suicide attempt; a two to four-fold increase in 
smoking, poor self-rated health, sexual partners numbering more than or 
equal to 50, and sexually transmitted disease; and a 1.4 to 1.6-fold 
increase in physical inactivity and severe obesity. The study also 
found adverse childhood experiences in graded relationship to the 
presence of adult diseases including ischemic heart disease, cancer, 
chronic lung disease, skeletal fractures, and liver disease.\35\ These 
findings command notice.
---------------------------------------------------------------------------
    \34\ Vincent J. Felitti et al., Relationship of Childhood Abuse and 
Household Dysfunction to Many of the Leading Causes of Death in Adults: 
The Adverse Childhood Experiences (ACE) Study, 14 Am. J. Prev. Med. 245 
(1998).
    \35\ Id.
---------------------------------------------------------------------------
    The American Psychiatric Association has also concluded that 
victims of child sexual abuse are ``more prone to depression, substance 
abuse, sexual problems and thoughts of suicide.'' \36\ Interestingly, 
these are symptoms commonly associated with Posttraumatic Stress 
Disorder (``PTSD'').\37\
---------------------------------------------------------------------------
    \36\ American Psychiatric Ass'n, supra note 31. See also G.B. 
Ladwig & M.D. Anderson, Substance Abuse in Women: Relationship Between 
Chemical Dependency in Women and Past Reports of Physical and Sexual 
Abuse, 24 Int'l J. Addict 739-54 (1989); G.R. Brown & B. Anderson, 
Psychiatric Morbidity in Adult Inpatients with Childhood Histories of 
Sexual and Physical Abuse, 148 Am. J. Psychiatry 55-61 (1991).
    \37\ Whitfield, supra note 20, at 2.
---------------------------------------------------------------------------
    The experience of traumatic stress,\38\ which has an impact similar 
to repeated stress, differs from the normal stresses that we experience 
in our daily lives (for example, when a tire goes flat, a wallet is 
lost, or a job is lost).\39\ It occurs when a person is seriously 
harmed physically or psychologically and especially where there is no 
supportive human environment in which to process the experience and 
heal. Its effects are usually more severe when the trauma is of human 
origin, and is even more severe when it comes from primary caregivers, 
such as parents or parent figures. The specific trauma of child sexual 
abuse is harmful in most of these regards.\40\
---------------------------------------------------------------------------
    \38\ Traumatic stress has been most thoroughly documented with 
respect to combat veterans. J. Douglas Bremner et al., Childhood 
Physical Abuse and Combat-Related Posttraumatic Stress Disorder in 
Vietnam Veterans, 150:2 Am. J. Psychiatry 235 (Feb. 1993). Recently, 
the analogy has been extended to and researched with regard to child 
sexual abuse survivors, with intriguing results:
    ``Individuals abused in childhood may have acquired characteristic 
methods of coping with stressful experiences, such as emotional 
numbing, which may, in fact, make them more susceptible to subsequent 
trauma such as combat stress . . . . In other words, exposure to stress 
early in life increases the vulnerability to psychopathology in 
response to subsequent stressors . . . .''--Id. at 238.
    \39\ See generally Whitfield, supra note 20, at 1; Sapolsky, supra 
note 15.
    \40\ Whitfield, supra note 20.
---------------------------------------------------------------------------
    As a child endures the trauma associated with child sexual abuse, 
and especially where the abuse is at the hands of someone the child 
loves or trusts, he or she is forced to accept the experience, through 
repression, dissociation,\41\ or other behavior.\42\ This implicit 
acceptance is often termed ``child sexual abuse accommodation 
syndrome,'' \43\ which commonly results in PTSD.\44\
---------------------------------------------------------------------------
    \41\ See Judith L. Herman, Crime and Memory, 23 Bulletin of the 
American Academy of Psychiatry and the Law 5-17 (1995) (``Peripheral 
detail, context, and time sense fall away, while attention is strongly 
focused on central detail in the immediate present. When the focus of 
attention is extremely narrow, people may experience profound 
perceptual distortions, including insensitivity to pain, 
depersonalization, time slowing and amnesia. This is that state we call 
dissociation . . . .'').
    \42\ Jennifer J. Freyd, Betrayal Trauma: The Logic of Forgetting 
Childhood Abuse 75 (1996) (``the trauma of child abuse, by its very 
nature, requires that information about the abuse be blocked from 
mental mechanisms that control attachment and attachment behavior.'').
    Marilyn Van Derbur, former Miss America, describes the necessity of 
repressing the experience of child sexual abuse as follows:
    ``I would disclose my secret to one person at a time, knowing that 
the person I told, each and every time, would . . . finally know how 
dirty, bad, ugly, unlovable, and unacceptable I was. How could a former 
Miss America be an incest survivor? How could a father pry a little 
girl open, starting at age five, and continue until she left for 
college at age eighteen? How could I possibly repress those 
experiences? The more relevant question would be, how could I not? How 
could any child lie in bed, night after night, year after year, 
wondering if tonight would be the night. That kind of terror, that kind 
of horror could not be endured or contained for any long period of 
time. Splitting my mind was a miraculous survival tool. How I bless my 
child/mind for finding a way to survive.''
    Marilyn Van Derbur, Foreword, in Long and Mature Considerations: A 
Legal Guide for Adult Survivors of Child Sexual Abuse iii (1997).
    \43\ Whitfield, supra note 20, at 1 (citing J. Davidson, Issues in 
the Diagnosis of Post-traumatic Stress Disorder, in PTSD: A Clinical 
Review (R.S. Pynoos, ed., 1993) and R. Summit, The Child Sexual Abuse 
Accommodation Syndrome, 7 Child Abuse & Neglect 177-93 (1983)).
    \44\ Id.
---------------------------------------------------------------------------
    Moreover, as previously mentioned, the symptoms usually descriptive 
of PTSD are predominantly those which are central to the experience of 
child sexual abuse survivors.\45\ Also related are
---------------------------------------------------------------------------
    \45\ Whitfield, supra note 20, at 2 (citing A.B. Rowan & D.W. Foy, 
PTSD in Child Sexual Abuse Survivors: A Literature Review, 6(1) J. 
Traumatic Stress 3, 3-20 (1993)).
---------------------------------------------------------------------------
        a wide array of psychiatric and psychological problems 
        associated with the PTSD occurring in these people. These 
        problems include: depression, increased fears, sexual problems, 
        feelings of isolation, guilt, distrust, anger, low self-esteem, 
        self-destructive behaviors, nightmares, sleep difficulties, 
        phobias, substance abuse, a tendency to reenact the trauma and 
        to be revictimized, and aggressive behavior. These psychiatric 
        and psychological symptoms appear in most cases to be the 
        after-effects of the trauma, and do not reflect defects of 
        character or personality of the victims.\46\
---------------------------------------------------------------------------
    \46\ Id.
---------------------------------------------------------------------------
    The National Institute of Justice reports that ``[p]eople who were 
sexually victimized during childhood are at higher risk of arrest for 
committing crimes as adults, including sex crimes, than are people who 
did not suffer sexual or physical abuse or neglect during childhood.'' 
\47\ ``Among children who were sexually abused, the odds are 27.7 times 
higher than for the control group of being arrested for prostitution as 
an adult.'' \48\ A report issued by the Department of Justice indicates 
that, of the more than 40,000 women currently imprisoned in state 
systems nationally, 34 percent reported being sexually abused as 
children.\49\ This number represented over three-quarters (78.8 
percent) of the female prisoners who had reported abuse (physical or 
sexual).\50\
---------------------------------------------------------------------------
    \47\ Cathy Spatz Widom, National Institute of Justice, Victims of 
Childhood Sexual Abuse: Later Criminal Consequences (Mar. 1995).
    \48\ Id. See also Statement of Christine Glazier (July 2, 1998), 
finding that: ``one consequence of childhood abuse is not knowing what 
`normal' relationships are and [having] no sense of what 
`inappropriate' meant in terms of how I was treated by people. A child 
can only know what they learn and the associations that one makes in 
childhood [are] without benefit of maturity, education or reasoning . . 
. I, in my confusion about what was `good' in a woman, would actually 
find myself in continued situations where I was the `victim' of . . . a 
total misreading of the actual intentions of most of the men in my 
life. I truly believed that all men really wanted was a sexual 
relationship. That nothing else mattered and that if I did not have sex 
I would be punished. Even more important, I felt like a failure . . . . 
Many times I just wanted someone to hold me. And the way I got someone 
to hold me as a child was to perform.''--Id.
    \49\ Tracy Snell, U.S. Dep't of Justice, Survey of State Prison 
Inmates (1991).
    \50\ Id.
---------------------------------------------------------------------------
    There is clear evidence that the psychological consequences of 
child sexual abuse are having profound effects on the well-being of our 
society.\51\
---------------------------------------------------------------------------
    \51\ Whitfield, supra note 20, at 2 (citing A.B. Rowan & D.W. Foy, 
PTSD in Child Sexual Abuse Survivors: A Literature Review, 6(1) J. 
Traumatic Stress 3, 3-20 (1993)); Neumann, supra note 32, at 6-16 
(``From the finding of these above recent extensive reviews of the 
clinical research literature, it is clear that child sexual abuse harms 
most victims in these numerous ways, and that these symptoms are 
usually the direct result of the sexual abuse itself and are not likely 
to be due to other causes.'').
---------------------------------------------------------------------------
 public health concerns: physiological detriment in adult survivors of 
                           child sexual abuse
    While the effects of child sexual abuse on a child's psychological 
development are easy to understand, a new area of concern is emerging: 
it is not only children's emotions that are compromised by sexual 
abuse, but their physiological functions, as well.\52\
---------------------------------------------------------------------------
    \52\ Ronald Kotulak, Epidemic of Violence and Stress is Devastating 
Kids' Brains, Chi. Trib., Apr. 14, 1993, at N1.
---------------------------------------------------------------------------
    Recent studies exploring the physiological effects of child sexual 
abuse have found ramifications of abuse to be far more encompassing 
than might be thought.\53\ While it has long been accepted that signals 
of child sexual abuse can include a loss of appetite, falling grades in 
school, depression, anxiety or other nonsexual behavioral changes,\54\ 
the idea that sexual abuse may have actual physical consequences (apart 
from genital afflictions) has only recently been proffered--and 
proven.\55\
---------------------------------------------------------------------------
    \53\ Brownlee, supra note 12.
    \54\ Coulborn-Faller, supra note 1.
    \55\ Martin Teicher, Increased Prevalence of Electrophysiological 
Abnormalities in Children With Psychological, Physical, and Sexual 
Abuse, 5 J. Neuropsychiatry & Clin. Neurosci. 401-08 (1993).
---------------------------------------------------------------------------
    Neurological abnormalities associated with a history of abuse have 
been found through the use of methods such as neurological 
examinations, electroencephalograms (EEG) and brain electrical activity 
mapping, computerized tomography (CAT) scans, and magnetic resonance 
imaging (MRI), and neuropsychological testing.\56\ These procedures 
yielded evidence of increased electro-physiological abnormalities in 
subjects with a history of child sexual abuse, as compared to nonabused 
subjects; abnormalities were concentrated in the left side of the 
frontal, temporal, or anterior regions.\57\
---------------------------------------------------------------------------
    \56\ Id.
    \57\ Id.
---------------------------------------------------------------------------
    When research in this area first began, it was suspected that these 
findings would support the hypothesis that early and sustained sexual 
abuse causes the development of the brain to be altered, especially 
development of the brain's limbic structures.\58\ This thesis has now 
been documented, with child sexual abuse occuring before the child was 
eighteen years of age \59\ substantially correlated to a measure \60\ 
of ``somatic, sensory, behavioral and memory symptoms suggestive of 
temporal lobe epilepsy.'' \61\
---------------------------------------------------------------------------
    \58\ Id.
    \59\ Martin Teicher, Early Childhood Abuse and Limbic System 
Ratings in Adult Psychiatric Outpatients, 5 J. Neuropsychiatry & Clin. 
Neurosci. 301-30 (1993).
    \60\ Arthur J. Vander et al., Human Physiology: The Mechanisms of 
Body Function 222 (6th ed. 1994) (``The Limbic System is associated 
with learning, emotional experience and behavior, and a wide variety of 
endocrine functions . . . the parts of the Limbic System are connected 
with many other parts of the central nervous system.'').
    \61\ Id.
---------------------------------------------------------------------------
    According to neuroscientists, traumatic experiences, such as child 
sexual abuse, alter the ``normal'' course of physiological response, 
affecting stress and sex hormones in the body.\62\ More specifically, 
the repetitive stress caused by child sexual abuse effects an imbalance 
in the body's neurotransmitters: the volume of some, such as 
norepinephrine and serotonin, is reduced, while other chemicals, such 
as enkphalins (opiates) and steroids suffer no such depletion.\63\ In 
addition, a correlation between an increased presence of 
glucocorticoids and a loss of neurons, plus an inactivity of dendric 
branching in the hippocampus, that part of the brain responsible for 
storing short-term memories into long-term memories, has been 
observed.\64\ This disregulation causes atrophy of the hippocampal 
nerve cells: cells begin to weaken and break down, dissolving in size, 
which disrupts their connections, leading to their death. Consequently, 
the hippocampal function is significantly impaired.\65\ In addition to 
evidence of hampered left-hemisphere cerebral growth, there is 
concomitant evidence of early accelerated growth of the right 
hemisphere, associated with increased emotions, ``particularly 
negative'' ones.\66\ Thus, while the hippocampus is injured, the 
amygdala, responsible for the storage of emotional memories, remains 
intact, keeping the trauma of child sexual abuse close in the 
survivor's mind.\67\
---------------------------------------------------------------------------
    \62\ Kotulak, supra note 52. See generally, R. Joseph, 
Neuropsychiatry, Neuropsychology, Clinical Neuroscience: Emotion, 
Evolution, Language, Memory & Abnormal Behavior (2d ed. 1996) 
(discussing the effects of child sexual abuse induced stress on 
neurotransmitters and, consequently, the hippocampus and amygdala).
    \63\ Joseph, supra note 62.
    \64\ Bremner, supra note 10, at 24 (citing H. Uno et al., 
Hippocampal Damage Associated with Prolonged and Fatal Stress in 
Primates, 9 J. Neurosci. 1705-11 (1989)). See also R.M. Sapolsky et 
al., Hippocampal Damage Associated With Prolonged Glucocorticoid 
Exposure in Primates, 10 J. Neurosci. 2897-2902 (1990).
    \65\ Joseph, supra note 62; Telephone interview with Dr. Bruce 
McEwen, Ph.D., neuroscientist, Rockefeller University.
    \66\ Marilyn Elias, Sexual Abuse Can Weaken Victims' Immune System, 
USA Today (quoting Dr. Martin Teicher of Harvard Medical School, who 
has also studied the effect of sexual abuse on the electrical activity 
levels of the brain).
    \67\ Joseph, supra note 62. Impacts of this process include memory 
loss, amnesia, and PTSD, as well as other emotional and neurological 
abnormalities. Id. See also R.K. Pitman, Post-Traumatic Stress 
Disorder, Hormones, and Memory, 26 Biol. Psychiatry 221-23 (Editorial) 
(1989); J. Douglas Bremner et al., Functional Neuroanatomical 
Correlates of the Effects of Stress on Memory, 8 J. Traumatic Stress 
527-54 (1995).
---------------------------------------------------------------------------
    Studies focusing solely on the affects of child sexual abuse on the 
hippocampus have reported a twelve percent depletion in hippocampal 
volume in survivors of child sexual abuse, as compared with nonabused 
control subjects matched for variations in age, sex, alcohol and 
substance use, education and other potentially confounding factors.\68\ 
The studies have found deficits in verbal short-term memory \69\ and 
found that ``left hippocampal volume was correlated with duration of 
childhood abuse (measured in years).'' \70\ While the hippocampal 
volume in child sexual abuse survivors was less than that in nonabused 
controls, child sexual abuse survivors experiencing PTSD had a greater 
volume of the left temporal lobe than that of their nonabused 
counterparts.\71\ Accordingly, ``childhood abuse patients with PTSD 
perform better than controls on visual memory tasks, although verbal 
memory is significantly worse.'' \72\
---------------------------------------------------------------------------
    \68\ Bremner, supra note 10, at 26, 29 (citing J. Douglas Bremner 
et al., Deficits in Short-Term Memory in Adult Survivors of Childhood 
Abuse, 59 Psychiatry Res. 97-107 (1995)).
    \69\ Bremner, supra note 25 , at 102 (``Adult survivors of abuse 
had deficits in verbal short-term recall, as measured by decreased 
scores on the Logical component of the WMS (Weschler Memory Scale) for 
immediate recall and delayed recall, but not percent retention. Adult 
survivors of abuse also had deficits in verbal recall, as measured by 
the VeSRT (Verbal Selective Reminding Test).'').
    \70\ Bremner, supra note 10, at 24, 29.
    \71\ Id. at 30.
    \72\ Id.
---------------------------------------------------------------------------
    It is not just that memory is worse as a result of these 
impairments; ``considerable evidence supports a relationship between 
stress and alterations in memory.'' \73\ Neurotransmitters and 
neuropeptides, such as those described above, ``have the potential to 
result in an overconsolidation of memory traces,'' an occurrence which 
provides an explanation for the intrusive memories frequently 
experienced by PTSD-affected child sexual abuse survivors.\74\ While 
this paper will not engage in the current discourse on the etiology of 
dissociative amnesia, should be noted that ``[t]he fact that many 
individuals forget episodes of childhood abuse is well established. As 
many as 38 percent of trauma victims who experienced abuse severe 
enough to result in a visit to a hospital emergency room had no memory 
of the event twenty or more years later.'' \75\
---------------------------------------------------------------------------
    \73\ Bremner, supra note 25, at 98.
    \74\ Bremner, supra note 25, at 98 (citing R.K. Pitman, Post-
Traumatic Stress Disorder, Hormones and Memory, 26 Biol. Psychiatry 
221-23 (Editorial, 1989); R.K. Pitman et al., Effects of Intranasal 
Vasopressin and Oxytocix on Physiologic Responding During Personal 
Combat Imagery in Vietnam Veterans with Post-Traumatic Stress Disorder, 
48 Psychiatry Res. 107-17 (1993)).
    \75\ J. Douglas Bremner et al., Neural Mechanisms in Dissociative 
Amnesia for Childhood Abuse: Relevance to Current Controversy 
Surrounding the ``False Memory Syndrome'', 153 Am. J. Psychiatry 7, 71 
(July 1996 Festschrift Supplement) (citing L.M. Williams, Recall of 
Childhood Trauma: A Prospective Study of Women's Memories of Child 
Sexual Abuse, 62 J. Consult Clinical. Psychol. 1167-76 (1994)).
---------------------------------------------------------------------------
    While a link between child sexual abuse and a deficiency of the 
immune system can be readily established via the instances of abuse and 
penetration which lead to the transmission of disease, including Human 
Immunodeficiency Virus (HIV),\76\ another route has now been 
identified: child sexual abuse, with the stresses it causes, ``can 
impair the brain's physical development and leave victims with 
permanently weakened immune function.'' \77\ More such studies, 
pointing to a crucial relationship between the nation's physical well-
being and child sexual abuse are emerging, elucidating a pressing need 
to combat child sexual abuse and the factors that contribute to its 
occurrence.
---------------------------------------------------------------------------
    \76\ K. Lanning, U.S. Dep't of Justice, Child Molesters: A 
Behavioral Analysis for Law Enforcement (1986).
    \77\ Elias, supra note 67.
---------------------------------------------------------------------------
    Deficits in memory capabilities have ramifications on the 
possibility of treatment for adult survivors of severe child sexual 
abuse: \78\ as patients with a history of severe child sexual abuse may 
have consequential learning impairments which impact negatively on 
their academic success,\79\ any rehabilitation program that directs a 
psychiatric patient (as child sexual abuse survivors often are) back 
towards the classroom may have an ill-fated chance of benefitting the 
patient.\80\ In the event that the child sexual abuse survivor is able 
to overcome the persistent psychiatric and psychological afflictions 
involved, the physiological detriment stemming from a history of child 
sexual abuse may prove to be too sizable a block to reintegration into 
society--or at least, the workforce.\81\ Practical examples of academic 
disadvantage, which can be readily connected to child sexual abuse, 
``underscore the magnitude of childhood abuse as a major public health 
problem.'' \82\
---------------------------------------------------------------------------
    \78\ Bremner, supra note 25, at 105.
    \79\ Id. (citing P. Saigh, personal communication with the author, 
Feb. 1, 1995).
    \80\ Bremner, supra note 25, at 105.
    \81\ Id.
    \82\ Id.
---------------------------------------------------------------------------
                               conclusion
    Child sexual abuse is a silent threat to the health of our society. 
Its ramifications, as they spread into the social, physical, and 
psychological aspects of North American society, are as pervasive as 
they are dangerous. The negative consequences of child sexual abuse 
often perpetuate the existence of the source they rebel against: many 
child sexual abuse survivors cyclically act upon their learned 
experience and abuse others. As the trauma spreads, then, the effects 
of that trauma erode the health of our social fabric, imposing a 
vulnerability akin to that of a sickly child.
    Just as we pay close attention to the physical ailments that 
assault us as individuals daily, we must become sedulous to take note 
of this most violent affliction. Given the substantial base of new 
knowledge regarding the overall impact of child sexual abuse on the 
health of society, cutbacks or reappropriation of funding directed to 
the study of the effects of child sexual abuse is both irresponsible 
and in conflict with the stated goals of the Institutes. Please 
consider a budget that reflects a concern for children and adult 
survivors of child sexual abuse. To do otherwise would be to ignore the 
daily structural damage committed against children and adult citizens, 
and to wrongly equate silence with safety.
                                 ______
                                 
Prepared Statement of Christine Stevens, Secretary; Cathy Liss, Senior 
 Research Associate; and Adam Roberts, Research Associate, Society for 
                     Animal Protective Legislation
 $8.6 million is needed for the retirement and care of former research 
                              chimpanzees
    The Society for Animal Protective Legislation respectfully requests 
an appropriation of $8,547,600 for the immediate, permanent retirement 
and humane care of chimpanzees no longer needed in biomedical research.
    The National Research Council finalized its report, ``Chimpanzees 
in Research: Strategies for Their Ethical Care, Management, and Use'' 
in 1997. The NRC Report acknowledges that the similarity between 
chimpanzees and humans ``implies a moral responsibility for the long-
term care of chimpanzees that are used for our benefit in scientific 
research.'' (page 9) The Report ``enthusiastically supports the 
principal of retiring chimpanzees not needed for research or breeding 
to a low-cost, high quality life.'' (page 77) Chimpanzees, an 
endangered species listed on CITES Appendix I, share 98.4 percent of 
our genetic material.
    The appropriation requested should be made available to an 
appropriate 501(c)(3) non-profit corporation, such as the Center for 
Captive Chimpanzee Care (CCCC), which would be capable, with such 
funds, of providing for the long-term humane treatment of chimpanzees 
ready to be retired. $7 million dollars would be used for initial 
construction and one year's operating expenditures; $1,547,600 would be 
available for the housing and care of 212 chimpanzees for one year at 
an estimated cost of $20 per chimp per day. Funds appropriated under 
this section which are not immediately expended for the facility 
construction and initial expenses could be set aside in an appropriate 
interest-bearing account to be used for operating expenditures after 
the first year.
    Although it is unclear how many chimpanzees realistically could be 
available for immediate ``retirement'' to a sanctuary constructed under 
this appropriation, the NRC Report notes that ``212 of the 1,000 
animals might be released to public sanctuaries or other long-term care 
facilities.'' (page 74) Thus, it is this initial benchmark figure which 
has been used to calculate the approximate initial chimpanzee 
retirement.
    Similarly, it is difficult to assess the actual cost for the 
ongoing care of these individual chimpanzees. The NRC, in examining 
hypothetical sanctuary models, concluded that ``for some plausible 
ranges of values, the models indicated net savings could be achieved 
from sanctuary construction.'' (page 60) A chimpanzee retirement 
sanctuary is a cost-effective way to house and care for chimpanzees no 
longer needed in biomedical testing.
    Any facility funded under this appropriation must meet certain 
criteria: 1) retirement must be permanent and 2) once in the sanctuary, 
no harmful, invasive, or stressful research can be conducted on any 
chimpanzee (research that is solely observational in nature may be 
conducted).
    The CCCC Board includes Jane Goodall, Ph.D. and Roger Fouts, Ph.D. 
In discussing the United States Air Force's divestiture of its chimp 
colony, Dr. Goodall noted that her ``ultimate wish for the Air Force 
chimpanzees is the same as it is for all the other chimps in labs . . . 
to know the grass and sun, and to know freedom and peace.'' Dr. Fouts 
added: ``The Air Force has an ethical obligation to honorably retire 
these involuntary recruits to a sanctuary where they can live out their 
lives in peace.'' Unfortunately, the lack of adequate funding for this 
sanctuary effort prevented the CCCC from gaining primary ownership of 
the Air Force chimps and may have resulted in the majority of them 
going to the Coulston Foundation, a chronic violator of the law (see 
page 3).
    Additionally, the NRC Report acknowledges that the existing captive 
chimpanzee population ``is more than adequate to meet research needs 
for at least five years'' and therefore concludes that there should be 
a moratorium on breeding chimpanzees for at least five years. Following 
this wise recommendation, this Committee should not appropriate funds 
for the breeding of chimpanzees in laboratories or for biomedical 
research, nor should it appropriate any money that would ultimately be 
used in an experimental protocol which requires additional breeding of 
chimpanzees.
 taxpayer dollars should not be provided to the coulston foundation, a 
                      chronic violator of the law
    The New Mexico-based Coulston Foundation should be prohibited from 
receiving any funds appropriated by Congress as a result of its 
remarkable record of flagrant violations of even the most minimal 
standards of animal care under the Animal Welfare Act.
    In 1993, three chimpanzees died in a housing facility maintained by 
the Coulston Foundation when failure to control the temperature caused 
the heat to rise to 140 degrees Fahrenheit. One year later, failure to 
provide adequate water led to the dehydration of 14 primates and the 
deaths of four of them. In that same year, the Coulston Foundation 
failed to provide adequate space for 37 primates; this deficiency in 
care was not remedied by the following year, and two years later, 27 of 
the 37 animals were still housed in unacceptable conditions.
    In 1998, the Coulston Foundation was once again charged by USDA 
with violations of the Animal Welfare Act relating to the negligent 
deaths of two chimpanzees. According to the USDA Animal and Plant 
Health Inspection Service press release, Coulston failed to handle 
three sedated chimpanzees ``in a manner that did not cause behavioral 
stress, physical harm, and unnecessary discomfort;'' failed to provide 
adequate pre-procedural and veterinary care; failed to ``maintain 
primary enclosures for nonhuman primates in good repair so as to 
protect the animals from injury and contain them;'' failed to ``store 
supplies of food for nonhuman primates in a manner that protects them 
from spoilage, contamination and vermin infestation;'' failed to 
``clean and sanitize primary enclosure for nonhuman primates as 
required;'' and the list, sadly, goes on.
    As if this were not bad enough, the Coulston Foundation was charged 
in February of this year with three new chimpanzee deaths. According to 
USDA, Coulston's failure to ``establish and maintain a program of 
adequate veterinary care, including the prevention, control, diagnosis, 
and treatment of diseases'' resulted ``in the unnecessary deaths of 
three chimpanzees known as Holly, Terrance, and Muffin.'' Michael Dunn, 
USDA's Under Secretary for Marketing and Regulatory Programs said of 
this case: ``We have grave concerns regarding the circumstances under 
which several chimps have died at the Coulston Foundation.''
    The Coulston Foundation should not be rewarded for its egregious 
failures to comply with the law by continuing to receive millions of 
dollars in taxpayer-funded grant support.
    $2 million is requested for research on refinements in primate 
handling, care and housing to permit compliance with the federal animal 
                              welfare act
    In 1985 Congress passed the Improved Standards for Laboratory 
Animals Amendment to the Animal Welfare Act. This new law included a 
mandate for a ``physical environment adequate to promote the 
psychological well-being of primates.'' In addition, the law emphasized 
the importance of consideration of alternatives in projects involving 
the use of animals in potentially painful or distressful research. An 
often overlooked alternative is ``refinement'' in the conduct of 
research, and improving the training, housing and/or care provided to 
laboratory animals is an extremely worthwhile and achievable 
refinement.
    Unfortunately, the spirit of these important components of the 1985 
amendment are not being met in the majority of facilities which utilize 
primates. Though the amendment was implemented in 1989, most primates--
by nature social creatures--remain isolated in single cages in the 
laboratory. In far too many cases primates have been provided with 
simple toys, that quickly loose their novelty and remain unused in a 
corner of the animal's barren cage. Much more needs to be done for 
primates to provide for their well-being. Additional research in this 
area is sorely needed.
    In the 1950s R.A. Chance found that ``the better the conditions of 
the animals' well-being--in housing, treatment and social situation--
the lower the variance'' in research results. If we use ethological 
sophistication to provide laboratory primates with the best physical 
and social environmental conditions for their well-being, we may be 
able to use fewer of them in research, and our results will be accurate 
and reliable.
    In addition, primates used in research are commonly subjected to 
catching, handling, and restraint procedures that cause unnecessary 
excitation and distress. Such procedures include catching animals with 
nets, forcing animals into transport boxes with sticks or squeeze-back 
cages, physical immobilization during venipuncture or restraint in a 
monkey chair. A primate who experiences undue excitation or distress 
while being caught, handled or restrained for scientific data 
collection is no longer a suitable research model because its 
behavioral and physiological responses are not normative. Data 
collected from these subjects are likely to be biased and hence of 
little scientific value. Simple and safe alternative handling methods 
have been developed, but much more work needs to be done. Funding needs 
to be provided for this purpose.
    We hope that $2 million can be designated for research specifically 
to improve the housing, handling and care of primates in the 
laboratory. Such research will provide numerous benefits to the animals 
and to the researchers. Better cared for laboratory animals will yield 
better research results.
  to ensure the integrity of research and protect family pets, an nih 
policy against acquisition of dogs and cats from random source dealers 
                               is needed
    In February of this year, the Department of Justice announced the 
conviction of nine individuals on charges related to theft of animals 
for sale to medical research. The ringleader, a random source animal 
dealer licensed by the USDA, sold hundreds of dogs to laboratories in 
California and Washington State including the University of Southern 
California (which received $99,419,542 from NIH in fiscal year 1998), 
Cedars Sinai Medical Center (which received $10,749,429 from NIH in 
fiscal year 1998) and the Seattle Institute of Biomedical and Clinical 
Research (which received $4,470,930 from NIH in fiscal year 1998).
    Stolen pets have been purchased, experimented on and killed in 
research institutions that receive funds from the National Institutes 
of Health. Taxpayer dollars should not contribute to this unscrupulous 
trade. Random source dog and cat dealers are the problem. Though these 
dealers are licensed and inspected by USDA, the Department of 
Agriculture is unable to provide an assurance that the animals sold by 
these dealers are not stolen pets.
    Random source dealers are not used to supply dogs and cats used for 
intramural research at NIH. This excellent example should be followed 
in providing funds for extramural research. Random source dealers 
should not be used as a source of animals for extramural research. Dogs 
and cats can be obtained from licensed breeders and from some municipal 
pounds. Therefore, we encourage you to include report language 
recommending that NIH discourage the acquisition of dogs and cats from 
random source dealers in extramural research projects. This is the only 
way to ensure that stolen pets including those acquired by deception, 
are not used in federally funded research.
    I conclude with a statement provided by Dr. Robert A. Whitney, 
former Deputy Surgeon General, U.S. Public Health Service:
    ``I have an extensive background in this and other issues of public 
concern about the procurement and use of animals for biomedical 
research. Before becoming Deputy Surgeon General in 1992, I served as 
Director, National Center for Research Resources (NCRR) of the National 
Institutes of Health (NIH). In my 22 years at NIH I was responsible for 
production, procurement, and care of animals used in NIH intramural 
research. I also served as chairperson of the NIH Animal Care and Use 
Committee, Chairman of the U.S. Government Interagency Research Animal 
Committee (IRAC), and Director, NIH Office of Animal Care and Use. At 
NIH, the use of dogs from Class B dealers, otherwise known as random 
source dogs, ceased many years ago.
    ``Over the past 25 years I have been involved in the development 
and update of most of the federal policies and regulations governing 
appropriate care, use, and welfare of animals used in biomedical 
research. This experience has led me and many of my colleagues to 
believe that our inability to guarantee the quality of procurement and 
care of animals from Class B dealers creates many problems in public 
perception for the biomedical research community, and potentially in 
the research itself. Despite the small number of animals obtained from 
these sources, their use portends many more problems than the benefits 
which might be derived.''
    Thank you.
                                 ______
                                 
    Prepared Statement of Melissa Haley, Executive Vice President, 
                      Children's Heart Foundation
    Distinguished Subcommittee Members: On behalf of the Children's 
Heart Foundation and all that are suffering from congenital heart 
defects we enter this testimony for consideration for the fiscal year 
2000 budget hearings. We ask that the members of this committee will 
grant fifty million new dollars to the NIH earmarked for congenital 
heart defects, America's number one birth defect.
    In these next few pages you will find facts on CCVM (congenital 
cardiovascular malformations) and stories of families who have lived 
with these life-threatening conditions. One of these families has lost 
the battle and another still carries the hopes of survival. You will 
also hear from two cardiologists. Dr. Marla Mendelson, a cardiologist 
from Northwestern Hospital in Chicago treats teens and adults with 
congenital heart defects, and Dr. Pedro J. del Nido, Cardiac Surgeon 
Harvard Medical School. Dr. del Nido speaks to the importance of 
medical cardiac devices needed for children and tissue engineering.
    Upon searching the NIH for projects in congenital heart defect 
research, I have found statistics that are enlightening.
  --Eight percent of all deaths during the first year of life are 
        caused by congenital cardiovascular malformations (CCVM). 
        Approximately 30,000 babies are born each year with this 
        anomaly and 2,900 of them will die before their first birthday.
    I am a mother who has lost her child to congenital heart defects. 
My name is Betsy Peterson. My son Sam was born with complex congenital 
heart defects. Sam had his first surgery at three days old. One could 
only imagine the pain of seeing your newborn, a helpless baby, after 
having such a terribly invasive operation. As Sam grew he needed more 
surgeries, four in all. During these surgeries Sam was given a 
pacemaker, valve replacement and shunt replacements. Before his 
untimely collapse and subsequent death he was facing a fifth surgery. 
This one he was very afraid of having. He said ``Mom, I really don't 
want to go through the next surgery''. Through all Sam's health 
problems, he was an active vital part of his school and church and he 
had many close friends. Sam was a soccer player and enjoyed golf. He 
was a friendly child who always felt the pain and loneliness of others. 
Sam had a life. He will never be forgotten and his memory lives on in 
the dedication of the Children's Heart Foundation and the mission to 
eradicate Congenital Heart Defects.
    Doctors do not know why my son Sam was born with these anomalies or 
why he suddenly collapsed at school one day at the age 8. Sam died 12 
days after that collapse due to multiple organ failure. After much 
investigation, I learned that there was no national group strictly 
devoted to raising money for congenital heart research. It was upon his 
untimely death, January 3. 1995 when our family was trying to decide 
where memorial gifts should be directed, that I learned congenital 
heart defects are America's number one birth defect. I was shocked to 
learn that approximately one out of every one hundred and fifteen 
babies is born with congenital heart defects.
  --Forty two percent of all birth defects are caused by CCVM. All 
        these congenital defects are equally distributed among all 
        populations in the U.S. Many children who survive infancy go on 
        to suffer in their older years. They are forced into a life of 
        dependency on medications, medical procedures and repeated 
        open-heart surgeries. These children often have impaired 
        physical and social development.
    A mother of an adolescent testifies as to her child's daily life. 
`` My daughter, Jessica will be 16 years old on June 7, 1999. Jessica 
has a hyperplastic left heart. She lacks energy and is often more prone 
to getting sick than the typical child. Her recoveries from illnesses 
also seem to take longer. Jessica has missed a lot of school in the 
last three years and a lot of socialization. She is on three heart 
medications in addition to one she takes for migraines. It is difficult 
to medicate her for pain because one of her heart medications is a 
blood thinner. Although we try to maintain a positive atmosphere as 
much as possible, the stress on the entire family has been 
considerable. We have been lucky until now, financially, most of our 
costs have been covered by insurance. However there are still co-pays 
on medicine, doctors visits, physical therapy, counseling and 
rehabilitation. All of these are extra expenses a typical family may 
face. Jessica had four heart surgeries by the time she was thirteen and 
a half. From the time she was five until she was thirteen her heart was 
massively enlarged. Toward her thirteenth birthday, her health began 
failing and it was determined that she needed either a revision of her 
third surgery or a heart transplant. We chose the revision, but that 
procedure would not have been available if we had had to make that 
decision three years before. Because of all the research being done, my 
daughter is alive today. Research can save many lives, as it has saved 
my daughter, but sometimes it can take us only so far. That is why it 
is so important that the research in congenital heart defects continue 
to be supported. For a long time we were ``even with the research''. 
Somehow Jessica lasted until a new technique was developed, but again, 
at this point we are ``even with the research''. I believe that 
congenital heart research has been seriously neglected. I teach special 
education and many of my students also suffer with congenital heart 
defects, in addition to other disabilities.
    Jessica knows that someday she will probably need a transplant. I 
think she has known that on some level for a long time. I can imagine 
her fears and the uncertainty she must feel about her life. She is a 
very brave girl and I know that she has been a gift for me, but a gift 
that I may not be able to keep.''
  --Deaths due to CCVM occur throughout childhood, adolescence and 
        young adulthood. Thirty six hundred children under age 15 die 
        annually from these defects. In addition to the incredible 
        impact on the families, the social costs are great as well. In 
        1992 nearly $500 million was spent to pay for 44,000 
        hospitalized children who were under 15 years old. Because so 
        few children lived long enough to have children of their own, 
        genetic studies have been difficult. However research has now 
        come to the conclusion that most CCVM occurrences are caused by 
        gene defects. According to information provided by the NHLBI, 
        genes may be the direct cause for at least 8 different 
        structural heart defects. The discovery of causes such as 
        genetic links and their resultant new procedures will help 
        these children live more normal lives.\1\
---------------------------------------------------------------------------
    \1\ NIH Guide: Gene Nutrient Interactions in the Pathogeneses of 
Congenital Heart Defects p.2 Backround.
---------------------------------------------------------------------------
    Dr. Marla Mendelson writes of her experiences as a cardiologist. 
``Congenital heart disease may be most often diagnosed during 
childhood, but it is not a childhood illness. The ramifications of 
having been born with congenital heart disease may have lifelong 
effects. Although it is true that the tremendous advances in surgery 
for congenital heart disease permit the child to achieve adulthood, he 
or she may be not be cured. Often new problems emerge and require 
medical or surgical intervention long after childhood. This may be as 
simple as a pacemaker or as complex as cardiac transplantation.
    The child born with heart disease spends his childhood in the 
hospital as a patient, a role few understand until middle age or 
beyond. After surgery and adolescence under the watchful eyes of 
parents and physicians, he or she may wish to walk out of the 
Children's hospital and never look back. After a very abnormal 
childhood these patients long to be like everyone else. They want to 
work, have fun with their friends, marry and have families. But these 
simple aspirations may not be easily attainable. Finding a job may not 
be a problem but healthcare benefits are not often available. These 
people have the ``original'' pre-existing illness as they were born 
with their heart disease, and may be disqualified from health coverage 
or even life insurance. Therefore they are faced with the dilemma of 
working but having no health coverage or declaring themselves to be 
disabled.
    The desire to have a family may not be easily realized for these 
patients. After seven surgical procedures, a young woman only wanted to 
be like her friends. She wanted to participate as a dancer in local 
Community Theater with her husband. But when evaluated for the safety 
of pregnancy, concerns about her welfare were raised. Not wishing to 
further compromise her own health, she adopted a child from Eastern 
Europe.
    A forty five year old woman once told me she had had congenital 
heart disease but had surgery and was discharged from the children's 
hospital at age eighteen, never to return. I asked her whether she had 
received any advice regarding what she could expect in life and that 
she should have periodic evaluations. She stated, ``They were just 
happy I made it to eighteen! They never expected me to live this long'. 
We are rapidly acquiring data on these survivors because although our 
expectations have increased, we still have a great deal to learn.''
  --Dr.Pedro J. del Nido pinpoints some of the most urgent research 
        needs for pediatric heart patients. Dr. del Nido stresses that 
        while many advances have been made in bioengineering, children 
        have not been the beneficiaries. He cites the specific example 
        of the mechanical heart assist device. There are several pumps 
        available for adults but none for pediatric patients, where the 
        need is so great. Another area of need is in tissue 
        engineering. This is the use of a child's own tissue to replace 
        defective structures such as heart valves and blood vessels and 
        even the whole heart. These capabilities most importantly would 
        then eradicate the need for prosthetic devices and transplants. 
        Genes may be the cause of at least eight different congenital 
        heart defects. Dr. del Nido urges Biomaterials to be developed 
        to help in the delivery of gene therapy intercellular 
        delivery.\2\
---------------------------------------------------------------------------
    \2\ Pedro J. del Nido M.D. Harvard Medical School: Excerpt taken 
from the draft proposal for Pediatric Bioengineering Initiative to be 
delivered to the U.S. House Appropriations Committee for the fiscal 
year 2000 budget hearings.
---------------------------------------------------------------------------
    Individuals and grassroots efforts can do only so much. Congress 
must take on this effort and increase appropriations. We implore this 
committee to grant an increase of fifty million new dollars to the 
fiscal year 2000 budget earmarked to the NIH for congenital heart 
defects research. We thank you for your attention to our request.
                                 ______
                                 
   Prepared Statement of Morgan Downey, Executive Director, American 
                          Obesity Association
    Mr. Chairman, my name is Morgan Downey. I am testifying today as 
Executive Director of the American Obesity Association which was 
founded to serve as an advocate for the millions of persons in this 
country suffering with obesity and as a person with obesity.
    Mr. Chairman, I come before you today to discuss the greatest 
neglected public health crisis in this country--obesity. Unfortunately 
and tragically this neglect also occurs in the world's premier 
biomedical research organization, the National Institutes of Health.
    During this last year, the American Obesity Association was 
actively involved in discussions regarding NIH priority setting 
procedures. I testified before the Institute of Medicine Committee 
examining this matter and closely reviewed its report and NIH's own 
statements on setting priorities and its meetings concerning 
establishment of the Council of Public Representatives. It is my 
conclusion that NIH does not have any meaningful priority setting 
procedure and that current steps such as the Institute planning 
meetings and COPR, are meant to merely support the existing structure.
    The proof is this conclusion is simple. If NIH followed its own 
priority setting procedures, or that recommended by the Institute of 
Medicine, obesity would have to receive far, far greater funding than 
it does.
    The National Institutes of Health has identified six criteria for 
consideration in establishing research priorities. They are:
    1. Number of people who have a particular disease,
    2. Number of deaths caused by a disease,
    3. Degree of Disability produced by a disease
    4. Degree to which a disease cuts short a normal, productive, 
comfortable life,
    5. Economic and Social Costs of a disease,
    6. Need to act rapidly to control the spread of a disease.
    (Setting Research Priorities, NIH, 1997)
    To this list, the Institute of Medicine recommended adding:
    (7) the burden and cost of disease, and
    (8) the impact of research on the health of the public.
    Obesity, when compared to other diseases and conditions, meets or 
exceeds all of these criteria and yet it is treated like an orphan 
disease at NIH. Consider the following:
           1. number of people who have a particular disease
    The prevalence of obesity in the United States has increased from 
25 percent of the adult population in the second National Health and 
Nutrition Examination Survey (NHANES II, 1976 to 1980) to approximately 
35 percent of the adult population in the NHANES III survey (1988 to 
1991). This represents an absolute increase in prevalence of 10 percent 
and a relative increase of 40 percent.
    Increases in obesity have occurred across virtually all ethnic, 
racial, and socioeconomic populations and all age groups. Certain 
minority populations, particularly minority women, have been found to 
be at the greatest risk for obesity and hence, its co-morbidities. In 
NHANES III, nearly 50 percent of all African-American and Mexican women 
surveyed were obese. Within the 45- to 55-year-old age group, the 
prevalence of obesity was between 60 percent and 70 percent.
    An estimated 97 million adults in the United States are overweight 
or obese, a condition that substantially raises the risk of morbidity 
from approximately 32 conditions including, in part, birth defects, 
hypertension, dyslipidemia, type 2 diabetes, coronary heart disease, 
stroke, gallbladder disease, osteoarthritis, sleep apnea, respiratory 
problems, and endometrial, breast and colon cancer. Higher body weights 
are also associated with increases in all-cause mortality.
    To put these figures in context, consider that there are 600-
700,000 persons affected with HIV/AIDS, 8 million with cancer, 16 
million with diabetes, 22 million with heart disease and 58 million 
with serious health risks from obesity.
                2. number of deaths caused by a disease,
    Poor diet and sedentary life style are responsible for between 
300,000 and 587,000 deaths a year, making it the second leading cause 
of preventable death after tobacco. The figure of 300,000 to 587,000 
deaths should be compared to 400,000 deaths from tobacco, 100,000 from 
alcohol, 90,000 from microbial agents, 60,000 from toxic agents, 35,000 
related to firearms, 30,000 due to sexual behavior, 25,000 from motor 
vehicles, and 20,000 from illegal use of drugs. (McGinnis JM, Foege, 
WH, Actual Causes of Death in the United States, JAMA, 1993; 270:2207-
2212)
             3. degree of disability produced by a disease
    Many persons with severe levels of obesity are compromised by 
functional limitations so severe that their ability to engage in 
significant gainful occupations is lost or diminished. Obesity is a 
causal factor for some 30 diseases or conditions many of which are 
incapacitating, such as complications from diabetes, arthritis and 
heart disease. Individuals at a high level of obesity often experience 
musculosketal, cardiovascular, peripheral vascular and pulmonary 
complications which make gainful employment impossible.
     4. degree to which a disease cuts short a normal, productive, 
                            comfortable life
    Mortality and morbidity from obesity increase in proportion to 
increases in excess weight. One study concluded that, ``obesity is 
strongly predictive of mortality from all causes combined, 
cardiovascular disease, and some cancers. (Solomon CG, Manson JE, 
Obesity and Mortality: a Review of the Epidemiologic Data, Am J. Clin 
Nutr. 1997; 66 (suppl) 1044S-1050S) Deaths from obesity appear to peak 
around age 75. This may be due to several causes but it appears that 
persons who are less resistant to the health effects of obesity die off 
before old age.
               5. economic and social costs of a disease
    According to data compiled by the World Health Organization 
International Obesity Task Force, the economic costs of obesity are 3 
percent to 8 percent of the total health care expenditures in the 
United States and Europe--proportions at least as great as those for 
all cancer and AIDS.
    The total costs attributable to obesity from just a few of the 
conditions it causes amounted to $99.2 billion dollars in 1995. 
Approximately $51.64 billion of those dollars were direct medical 
costs. The cost of lost productivity attributed to obesity was $3.9 
billion reflecting 39.2 million days of lost work, 239 million 
restricted-activity days, 89.5 million bed-days, and 62.6 million 
physician visits attributable to obesity in 1994. (Wolf AM, Colditz GA, 
Current Estimates of the Economic Cost of Obesity in the United States, 
1998)
       6. need to act rapidly to control the spread of a disease
    Obesity is increasing rapidly in the adult, child and adolescent 
populations. Approximately 11 percent of children and adolescents were 
overweight in 1988 to 1994, and an additional 14 percent had a BMI 
between the 85th and 95th percentiles. The increases occur across all 
age, ethnic and gender categories. Overweight in adolescence predicts 
overweight in adulthood and adverse health effects in adulthood.
    Among women age 30-39, obesity has increase 53 percent in 34 years 
or 1.5 percent per year.
    Globally, the picture is the same. The increase in obesity is a 
world-wide phenomenon. Obesity has been described by the World Health 
Organization as an ``escalating epidemic'' and ``one of the greatest 
neglected public health problems of our time with an impact on health 
which may prove to be as great as smoking.'' (Consultation on Obesity, 
Geneva Switzerland, World Health Organization, June 3-5, 1997)
                          7. burden of disease
    One study found that, relative to U.S. population norms, obese 
persons seeking university-based weight loss treatment reported 
substantial decrements in Health Related Quality of Life measurements, 
that the impact of obesity on HRQL varied with severity of obesity, and 
that functional disability among obese persons due to bodily pain was 
particularly common--comparable to that of chronic migraine sufferers. 
(Fontaine KR, Health-Related Quality of Life in Obese Persons Seeking 
Treatment. J. Fam Pract, 1996, Sept; 43(3):265-279). In addition, 
persons with obesity are subject to tremendous discrimination and 
stigma in our society. This has a special adverse impact on children 
and adolescents.
         8. the impact of research on the health of the public
    There is no question that the American public is extremely eager to 
deal with their weight problems. Unfortunately, the federal government 
and the National Institutes of Health have assumed little 
responsibility for the transmission of accurate, evidence-based 
research information. There the public's interest is too often met by 
tabloid type announcements of miracle cures, quick-fixes and magic 
bullets. Studies on successful prevention approaches and interventions 
useful for important subpopulations are urgently needed. In addition, 
the important molecular genetic studies on obesity will not be useful 
if better population studies do not occur. Programs for study of 
multiple therapies and for the effectiveness of treatment approaches 
are urgently needed.
    What are we to think of a disease which overwhelming meets all of 
NIH's own criteria for research priorities (and the IOM suggested 
criteria) and yet receives a pittance of funding and whose only 
organizational home is a program office within one of three branches in 
one of 6 Divisions in the National Institutes of Diabetes and Digestive 
and Kidney Disorders (diabetes being one of 30+ conditions caused by 
obesity). Without disparaging in any way the support of NIDDK, it is 
fair to ask where are the neuroscience research institutes who study 
brain and behavior ? Where are the institutes studying child health and 
aging? Where are the other Institutes whose core diseases are caused by 
obesity, such as the Heart Lung and Blood Institute and the National 
Cancer Institute. Where are the Institutes focused on substance abuse, 
addiction and mental health?
    Either NIH has engaged in some process which has met and discounted 
all the scientific data on obesity or it has no meaningful process in 
contraction of its own statements. I submit that the latter is the 
appropriate explanation.
    Unfortunately, the state of obesity research at NIH further belies 
its own self-descriptions of engaging in ``basic research.'' Patient 
advocates are often told that they must understand that all research 
cannot be labeled for their particular disease. Rather, NIH engages in 
``basic research'' which is fundamental to many disease states. One 
might think from this that NIH would research causes more than 
symptoms. But this is not the case. Diseases or conditions for which 
obesity is a recognized and independent risk factor receive far more 
generous funding than the causative condition itself--obesity. For 
example NIH expects in fiscal year 1999 to fund diabetes research at 
$449 million and hypertension research at $194 million or combined 400 
percent greater than obesity research (est. $144) even though most 
diabetes (90-95 percent of Type 2 Diabetes) and hypertension (75 
percent) is caused by obesity. Can this be called a commitment to basic 
research?
    Therefore, the American Obesity Association urges the Committee to 
commission a study by the Institute of Medicine to (A) recommend 
scientific opportunities for research on obesity (B) recommend the 
optimal organizational structure at the National Institute of Health 
for obesity research and (C) identify the required budgets to support 
an aggressive effort to maximize current scientific opportunities in 
the study of obesity as well as to engage in urgently needed public 
education campaigns.
    Given the growing prevalence of obesity and its clear threat to 
health, any long term investment which tries to improve public health 
or lower health care costs without accounting for the impact of obesity 
is wasted money.
                                 ______
                                 
Prepared Statement of Jerry Freundlich, Founder and President, Cure for 
                          Lymphoma Foundation
    The Cure For Lymphoma Foundation (CFL) a nationwide, not-for-profit 
organization dedicated to funding research and to providing support and 
education for those whose lives have been touched by Hodgkin's disease 
and non-Hodgkin's lymphoma appreciates the opportunity to participate 
in the fiscal year 2000 process.
    We endorse the testimony presented and recommendations made by 
Robert I. Handin, M.D. of the American Society of Hematology (ASH) and 
Richard J. Boxer of the Lymphoma Research Foundation of America (LRFA). 
Specifically, we urge Congress to adopt lymphoma-specific language for 
increased lymphoma research at the National Cancer Institute (NCI), the 
Centers for Disease Control and Prevention (CDC), and the National 
Institute of Environmental Health Sciences (NIEHS).
    The following is the requested report language:
                                  nci
    Lymphoma.--Lymphoma is the second fastest growing cancer by rate of 
incidence. It is estimated that approximately 88,600 Americans will be 
diagnosed with lymphoid malignancies in fiscal year 1999 with a 50 
percent mortality rate. [Of which 64,000 persons will be diagnosed with 
Hodgkin's disease and non-Hodgkin's lymphoma (NHL).] We are currently 
making strides in the fight against cancer, as evidenced by the decline 
in some cancer rates. However, the rate of incidence of lymphoma is 
actually increasing while little is known about the disease including 
its cause and effective treatment. The Committee encourages NCI to 
increase lymphoma research conducted at NCI, promote new innovative 
research models based on collaborative methods to maximize current 
lymphoma research conducted at NCI, collaborate research efforts with 
NIEHS to explore environmental factors as causes of lymphoma, and 
collaborate research efforts with CDC to promote increased research on 
the cause of lymphoma. The Committee also encourages NCI to consider 
exploring research in currently incurable lymphomas such as low-grade 
and aggressive incurable lymphomas.
                                 niehs
    Lymphoma.--Lymphoma is the second fastest growing cancer by rate of 
incidence. It is estimated that approximately 88,600 Americans will be 
diagnosed with lymphoid malignancies in fiscal year 1999 with a 50 
percent mortality rate. (Of which 64,000 persons will be diagnosed with 
Hodgkin's disease and NHL.) The Committee encourages NIEHS to 
collaborate research efforts with NCI to better understand 
environmental factors, which may contribute to the cause of the disease 
and expand research in collaboration with NCI to expand its knowledge 
on this disease.
                                  cdc
    Lymphoma.--The Committee encourages CDC to expand its support into 
the potential of environmental factors associated with lymphoma and 
encourages continued and expanded collaborative research efforts with 
the National Institutes of Health (NIH).
    Your Subcommittee endorsed similar language last year that was 
adopted as part of Senate Report 105-300. We ask that you continue your 
support in funding the research essential to improving treatments and 
finding a cure for lymphoma. We ask this because the causes of lymphoma 
remain unknown.
    On April 21, 1999, CDC, NCI, and ACS released an annual report on 
cancer, which found that between 1990 and 1996 NHL was one of two 
cancers increasing in incidence and death rates while all other cancers 
declined. In 1999 alone, the American Cancer Society (ACS) estimates 
that over 64,000 people will be diagnosed with lymphoma, approximately 
56,000 with NHL and 7,200 with Hodgkin's disease. In addition, over 
27,000 people will die from lymphoma, approximately 25,700 from NHL and 
1,300 from Hodgkin's disease. Furthermore, lymphoma is the third most 
common childhood cancer and comprises 10 percent of all childhood 
cancers in children under the age of 15.
    Almost eight years ago, I was diagnosed with large cell 
immunoblastic lymphoma. I was fortunate, because there was a 
chemotherapy protocol that worked for me. I was treated very 
aggressively with ``CHOP'' chemotherapy and radiation. From the very 
beginning I knew that my survival was a result of innovations in 
research that led to the development of CHOP. In 1994, I founded CFL. 
CFL was established with the intent to fund lymphoma research. Without 
new and innovative research, the rate of increase of lymphoma will 
undoubtedly continue to rise. We thank you for your consideration in 
this matter. Should you have any questions, please feel free to contact 
us.
                                 ______
                                 
 Prepared Statement of Sharon L. Monsky, Chairman, Board of Directors, 
                    Scleroderma Research Foundation
                              introduction
    Mr. Chairman and members of the Committee, I thank you for the 
opportunity to present testimony before you today and for all you have 
done in the past to support the National Institutes of Health and its 
mission to advance the most important and most promising medical and 
scientific research to improve the health of our great nation.
    I have come to you with but one request, which I dare say is 
different than any other requests you have heard in these chambers: I 
want you to help put me out of business.
    For a decade now, I have been the leader and champion of what, by 
anyone's standards, must be considered a very successful enterprise. It 
has grown quickly and is on the verge of great discoveries and 
unprecedented success in its niche. But, I have a very big problem: my 
clients are dying.
    Mr. Chairman, I am in the business of finding a cure for a disease 
which affects over half a million Americans, over 80 percent of them 
are women in the prime of their lives. More people are affected by this 
disease than muscular dystrophy, multiple sclerosis, or cystic 
fibrosis. The truth is that it is at least as disabling, more ugly, 
disfiguring, and even more deadly than any of these diseases. 
Unfortunately, most people have never heard of scleroderma, and there 
is relatively little being done to find a cure.
                        the disease: scleroderma
    I had no idea what I was up against almost seventeen years ago when 
I was diagnosed with scleroderma and given only a few short years to 
live. Scleroderma means ``hard skin.'' However, it is not just a 
disease of the skin. It is a chronic, degenerative, auto-immune disease 
that leads to the overproduction of collagen in the body's connective 
tissue. The overabundance of collagen hardens the connective tissue and 
destroys the organs involved...the vital organs we need to survive.
    Scleroderma can affect patients differently. It can be quite 
individualized. In about half the cases, the skin is the primary organ 
affected. In the other half, patients are diagnosed with systemic 
sclerosis, which typically involves the vital internal organs: kidney, 
heart, lungs, and/or the gastrointestinal tract. The great majority of 
patients with systemic sclerosis die within seven years of their 
diagnosis. There is no known cause or cure for scleroderma. In 
addition, there are no FDA approved therapies for any major symptom of 
this painful, ugly and often deadly disease.
    I am here today, thanks to the love and support of my three 
miracles, my children, and the renewed commitment and inspiration I 
continue to receive from patients, volunteers, and all those struggling 
with me on a daily basis to conquer this disease. I know in my heart 
the same thing that Harold Varmus knows in his head: this disease is 
curable. It is curable because our ability to diagnose it has advanced 
so significantly, because we have gained valuable insight into the 
basic science and pathogenesis of the disease, because our biomedical 
technology is now quite suited to the undertaking, and most of all, it 
is curable because the Scleroderma Research Foundation will not stop 
and I will not rest until we succeed.
                  the scleroderma research foundation
    The Foundation is the only organization in the country dedicated 
exclusively to finding a cure for scleroderma. We have made great 
strides in a very short period of time because we are in business to go 
out of business. Every day we work backwards from what is necessary to 
find a cure. Our research program is built on a concept of Cure 
Advocacy: an innovative approach which stands traditional research on 
its head by progressing along a well-focused path, sharing all research 
results immediately, rather than waiting for publication and review, 
and by working across traditional medical, academic and public-private 
boundaries.
    Dr. Regis Kelly, Chairman of the Department of Biochemistry and 
Biophysics at the University of California, San Francisco, says ``every 
$100,000 invested in this kind of research can produce $1 million in 
results compared to the usual methods.'' As Dr. Kelly explains, ``What 
is revolutionary in my experience is a streamlined, rational, planned 
system of research to get the fastest results in the most efficient way 
possible--the biggest bang for the buck--instead of the typical 
piecemeal approach.''
    Dr. Bruce Alberts, President of the National Academy of Sciences, 
predicts that our approach ``will serve as a model for future medical 
and scientific research, because of its unprecedented, unified plan of 
attack.''
                     research approach and progress
    The first test of this new approach was in the November, 1992, 
opening of the nation's first collaborative scleroderma research 
center, located in San Francisco. The Bay Area Scleroderma Research 
Center is a ``center without walls,'' bringing together outstanding 
researchers and advisors from Stanford University, University of 
California, San Francisco, and several private Bay Area biotech firms. 
In the last six and a half years, the Center has made unprecedented 
progress in establishing accurate diagnostic measures, developing 
disease modes, understanding the role of key cells in the disease 
onset, and discovering significant breakthroughs in the understanding 
of molecular mechanisms that underlie fibrosis (the hardening of the 
skin). This research team has consistently produced exciting findings. 
Just in the last six months, they have identified a type of collagen, 
one that was previously not recognized as important in scleroderma that 
was significantly increased in all the scleroderma fibroblasts. The 
team is also pursuing, quite successfully, an exciting new technology 
called GeneChip analysis to begin to work on complex collagen issues. 
Although it is unlikely that a single gene will be identified that 
causes scleroderma per se, an overall picture of what genes are turned 
on or off in scleroderma fibroblasts can be put together. From this 
much more complete picture of the fibroblast, we hope to reconstruct 
the events that occur in the disease. With the support of biotechs, and 
top advisors on a pro-bono basis, our investigators are able to make 
successful strides quite quickly.
    The interest generated within the scientific and medical research 
community afforded the Foundation an opportunity to create an 
additional East Coast Center, opened in August of 1994, in the 
Washington D.C./Baltimore area, with participation from Johns Hopkins 
University, the University of Maryland, the National Institutes of 
Health, and Baltimore Biotech. This second center has expanded to 
include Ohio State and is focused on understanding early vascular and 
skin changes in scleroderma patients, with special emphasis on helping 
to advance therapeutic techniques to slow development of the disease 
process. Again, this team also has been very successful. One of our 
leading investigators recently received a grant from the National 
Institute of Arthritis and Musculoskeletal and Skin Diseases for work 
specific to scleroderma through the competitive grant process. Another 
investigator has begun to define features that unify the autoantigens 
targeted by the immune system in scleroderma. An additional 
investigator has discovered that a specific response of the smooth 
muscle cell's genome (the DNA blueprint of the cells) could be 
responsible for the behavioral switch of these cells.
    Since the Scleroderma Research Foundation began in 1987, it has 
funded over $4 million in research projects. Through Cure Advocacy, the 
Foundation has brought together private industry and academia to direct 
and manage our efforts. More importantly, the Foundation is no longer 
just encouraging new and exciting young researchers into the field with 
special grants; many young rising stars have dedicated their careers to 
the basic science of scleroderma. It is no longer simply focused on 
finding the best medical and scientific research; it is indeed in the 
leadership position of nurturing and directing the finest research. 
Most importantly, the Scleroderma Research Foundation is now driving 
the science in the direction of a cure.
                              partnership
    The Scleroderma Research Foundation has successfully met the 
challenge of raising private funds, bringing together the top 
scientists, and targeting the most direct approach to finding a cure 
for chronic illness. The Foundation has two very successful and 
productive Scleroderma Research Centers. Yet much more needs to be 
done.
    In order to succeed, we desperately need the federal government to 
become a full partner in our investment in a cure. With current budget 
constraints and other established priorities, we are not willing to 
simply act as another advocacy organization fighting over shares of the 
pie, and we certainly do not want to take needed funds away from other 
deserving areas of health investigation. However, we do feel very 
strongly that scleroderma is an overlooked but important health problem 
facing a half a million Americans, primarily women. The need is clear.
    Most importantly, our collaborative approach to research has proved 
to be sound in both a research and business sense. We have leveraged $4 
million privately raised dollars into some of the most exciting 
research ever in the field. Our scientific advisors and investigators 
are amazed at what they can accomplish using this directed, 
collaborative approach working across traditional institutional and 
communication barriers. If nothing else, it is worth an exploratory 
investment from Congress to see if this model can really fulfill the 
prediction of Dr. Bruce Alberts, and change the way every disease is 
eventually research.
    Mr. Chairman and members of the committee, I am here today to ask 
Congress to recommend that the NIH become a partner in cure advocacy. 
The National Institutes of Health should fully participate in our 
multi-institutional, multi-disciplinary efforts to find a cure for 
scleroderma and other chronic illnesses.
    We have for several years requested in testimony to this committee, 
that Congress maximize the value of each federal dollar invested in 
biomedical research and demonstrate its willingness to become a partner 
in the search for a cure by matching the Foundation's investments in 
scleroderma research. We are requesting that Congress fund $4 million 
for this method of research through NIAMS or another appropriate NIH 
institute. There are many excellent opportunities for progress that are 
being missed in the current environment, and we believe it has nothing 
to do with any lack of commitment on the part of NIAMS. The institute 
director, staff, and investigators appear to be equally excited about 
the innovative approach we have brought to scleroderma research. They 
simply need the wherewithal to act and make a relatively small 
investment compared to total research allocations, but with a 
potentially huge rate of return.
    The Foundation continues to forge ahead each year with symposiums 
to determine the priorities for the scleroderma research campaign and 
to attract the best and brightest scientists to support our research 
efforts. In addition, we have continued to request that a national 
registry for scleroderma patients be created. We are not asking for a 
handout in this area, simply partnership. We have forged ahead on our 
own to establish a registry of tissue and lymphocytes on both the east 
and west coasts to assist investigators in the basic science of 
scleroderma. A commitment by NIAMS to create a national registry and 
work with us would achieve significant results very quickly and assist 
those involved in clinical and laboratory research on this disease.
    Finally, we ask that the committee demonstrate support for NIAMS 
and increase its appropriation to encourage its future growth and 
leadership in disease research.
                               conclusion
    Adopting and fostering a collaborative research approach to solve 
chronic illness is more important than appropriating millions of 
dollars for any one disease. The Scleroderma Research Foundation has 
taken the initiative to bring together the best of business and science 
in a fast-track search for a cure. We are asking you to join in this 
results-oriented partnership through concentrated federal support. By 
matching our investment in a cure, becoming our partner, and adequately 
funding NIAMS, Congress can leverage the most results from its research 
appropriations, and provide hope to hundreds of thousands of people who 
struggle daily with this terrible disease.
                                 ______
                                 
Prepared Statement of Travis Thompson, Ph.D., Director, John F. Kennedy 
   Center for Research on Human Development, Vanderbilt University; 
 Chairman, Mental Retardation and Developmental Disabilities Research 
                     Center Directors Organization
    Mr. Chairman and Members of the Committee: I am Dr. Travis 
Thompson, Director of the John F. Kennedy Center for Research on Human 
Development. It is a pleasure to submit this testimony on behalf of the 
network of 14 Mental Retardation and Developmental Disabilities 
Research Centers sponsored by the NICHD. The NICHD is at the forefront 
of our national effort to prevent mental retardation, learning 
disabilities, autism and related disabilities. The research sponsored 
by the NICHD has led to new treatment and educational methods, as well 
as more cost-effective habilitative strategies. The Mental Retardation 
and Developmental Disabilities Branch administers the 15 Mental 
Retardation Developmental Disabilities Research Centers (MRDDRCs) which 
are the focal point of our national effort to overcome problems of 
human development. This program includes research designed to solve 
problems unique to specific disabilities (e.g. Fragile X or Rett's 
Syndrome), as well as more general strategies that cut across numerous 
disabling conditions (e.g. problems of early language development). 
Fetal Alcohol Syndrome was first identified by researchers at one of 
the NICHD's MRDDRCs, and the first gene therapies for a developmental 
disabilities are being developed at two of the MRDDRCs (Duchene's 
Muscular Dystrophy and OTC deficiency). Promising programs of research 
on the genetic and metabolic disorder underlying Rett's Syndrome, and 
brain mechanisms underlying dyslexia are being done within the MRDDRC 
network. In the past several years a major research network has been 
established by the NICHD to address the causes, prevention and 
treatment of autism, and many of the researchers in that network are 
based at the MRDDRCs. The NICHD is a leader in research to understand 
the causes, treatment and the development of more effective educational 
strategies for children with learning disabilities. I would like to 
share with you several of these initiatives in more detail.
                 brain plasticity and early experience:
    Amazing advances are occurring in our understanding of the 
developing brain and it's impact on children's intellectual and 
emotional development. For over 3 decades we have known many children 
profit from early intervention, but we have not understood why these 
effects are lasting in some cases but temporary in others. Laboratory 
animal studies have shown changes in brain weights and organization 
when young animals were exposed to enriched early experiences. 
Recently, new evidence, discovered through work at the Rose F. Kennedy 
Center at the Albert Einstein College of Medicine in New York, 
indicates that the rate of formation of new brain connections reaches 
its peak between 18 months and 48 months of age . . . the time during 
which language development is occurring most rapidly. Further study at 
the Mental Retardation Research Center at UCLA showed that the 
availability of newer brain imaging methods such as Magnetic Resonance 
Imaging (MRI) reveals localized metabolic rate changes during this same 
period. These various lines of evidence, combined with studies of early 
intervention in autism and language development in poor and more 
affluent young children, such as the study at the MRDDRC at the 
University of Kansas, all point to the critical role of differential 
neuroplasticity in early experience leading to permanent changes in 
cognitive abilities. This is one of the most important areas of 
research in brain-behavior relationships to be exploited in the next 
decade, and we urge that a high priority be placed on this topic.
functional neuroimaging, electrophysiology & brain-behavioral processes
    New technologies permit brain scientists to study the brain of 
developing children at work, as well as providing insights into the way 
the brains of individuals with various developmental disabilities 
differentially process information. Functional Magnetic Resonance 
Imaging, Positron Emission Tomography and Quantitative Topographical 
EEG and Event Related Potential technologies have enormous promise in 
furthering our understanding of the relation between brain function and 
behavior among people with developmental disabilities. These new tools 
provide critical leads for differential diagnosis as well as 
documenting site and mechanisms by which treatments produce behavioral 
and cognitive outcomes.
    Researchers based in the network of MRDDRCs are studying brain 
structure and function among individuals with behavioral and 
developmental disabilties. The MRDDRC at the University of Washington 
in Seattle is using electrophysiological recording methods to 
understand differences in brain function of children with autism. 
Others at the Seattle MRDDRC have used Spectroscopic MRI to measure 
brain activity of dyslexic and non-dyslexic children while performing 
language tasks and non-language hearing tasks. Th ey found dyslexic 
children had higher brain metabolic activity levels in specific brain 
areas compared with a control group during a phonological listening 
task. This information, together with recent genetic findings holds 
great promise of a breakthrough in understanding the basis for certain 
forms of reading disabilities. Researchers at the Waisman Center at the 
University of Wisconsin are exploring the role of dysfunction 
subcortical brain areas in the emotional and behavior disorders seen in 
developmental disabilities. Universities find it extremely difficult to 
keep pace with the cost of these rapidly changing technologies without 
federal assistance. The NICHD has a critical role to play in assisting 
in updating and replenishing this critical research infrastructure.
                     genetic & behavioral research
Learning disabilities
    Clinicians have recognized for some time that reading disabilities 
run in families. Fathers who had reading problems in school are likely 
to have sons with reading disabilities. Dr. Bruce Pennington and his 
colleagues at the MRRC at the University of Colorado have identified 
four chromosomes as candidates for sites for genetic abnormalities 
associated with reading disabilities. Armed with this information, 
geneticists are better prepared to identify the proteins these genes 
produce and to study their role in abnormal brain development. This is 
a critical step in identifying how the brain abnormality originally 
developed and therefore a key to preventing reading disabilities.
Fragile X syndrome
    NICHD research has helped solve a major puzzle contributing to one 
of the leading causes of inherited mental retardation in the United 
States, Fragile X syndrome. These findings have also opened up a window 
to understanding the genetic basis for other neurological diseases 
including Rett syndrome, Down syndrome and Huntington's disease. 
Fragile X syndrome is due to a defect on the X chromosome, which means 
it is twice as common in male infants as female infants, affecting one 
in every 4,000 boys. Children with Fragile X syndrome have impaired 
learning ability, they are often painfully shy and prone to severe 
anxiety difficulties and some display serious behavior problems. Often 
girls with Fragile X are less severely affected, frequently having a 
learning disability affecting reading. NICHD sponsored research 
identified an abnormal repetition of a DNA sequence near the tip of the 
X chromosome that creates the ``fragile'' site which is responsible for 
the defect. The more repetitions of this sequence, the more severe the 
symptoms. Subsequently, it has been discovered that this same process 
of repeated DNA sequences is also found in Huntington's Disease, 
myotonic dystrophy, spinal muscular atrophy and several other 
neurological disorders. It was the initial discovery of this process of 
repetition of otherwise normal DNA sequences which led to scientists' 
ability to improve screening and diagnosis, and laid the foundation for 
research to overcome Fragile X and other ``triplet repeat'' syndromes.
Prader Willi Syndrome
    Prader Willi Syndrome (PWS) is a disorder caused by a genetic 
defect on Chromosome 15, leading to mild to moderate mental retardation 
and severe eating disorder. Though most people with PWS have sufficient 
skills to lead normal lives in the community, they are usually unable 
to control their appetite and eating, and as a result are often placed 
in highly restrictive and costly treatment settings. Drs. Elizabeth 
Dykens and Robert Hodapp at the MRRC at UCLA have made significant 
contributions toward understanding the underlying psychopathology and 
motivational characteristics of individuals with PWS. The first major 
comprehensive study of PWS is currently underway at the Kennedy Center 
at Vanderbilt University sponsored by NICHD. Several candidate genes 
believed to be responsible for specific features of the syndrome have 
been identified. It has been discovered that 60 percent of people with 
PWS also display Obsessive Compulsive Disorder that amplifies the 
severity of their eating disorder. This important lead may assist in 
identifying the specific gene or shared in common between PWS, autism 
and Obsessive Compulsive Disorder, the latter condition affecting an 
estimated 6-7 million Americans. Understanding the metabolic defect in 
this syndrome and the cause of the severe eating disorder could have 
important implications for understanding a broader range of obesity and 
health related conditions relevant to 58 million overweight American 
adults.
  language, communication, and learning in developmental disabilities
    Under an NICHD sponsored program of excellence in autism research, 
a network of 10 research centers are exploring brain-language-genetic 
relationships among individuals with autism. Even among disabilities 
which are often considered iless severei, such as learning 
disabilities, difficulty with reading and communicating can create 
extreme disadvantage. Recent developments at the E.K. Shriver Center in 
Waltham, MA and at the University of Kansas MRRC in Lawrence, KS, have 
greatly improved our understanding of prerequisites to language 
development. Shriver Center scientists have demonstrated pre-reading 
techniques can be taught to people with severe mental retardation, 
which is a remarkable accomplishment. Other researchers have provided 
strategies for accelerating language acquisition in preschool children 
with developmental delays, including the work of Drs. Steve Warren and 
Paul Yoder at the Kennedy Center at Vanderbilt University. They have 
developed techniques for jump-starting language growth of you ngsters 
pre-linguistically which appears to have lasting effects in early 
childhood. Work going on at other MRDDRCs using brain analysis methods 
have shed new light on linkages among basic communication processes, 
underlying brain mechanisms and intervention strategies. These 
developments include a greater appreciation for the development of 
early sensory, perceptual and memory skills and the manner by which 
they are critical to subsequent development of communication skills and 
learning. Another crit ical issue in future research is to better 
understand how the characteristics of individual children with 
disabilities or at risk for disabilities can be used to tailor make 
interventions to jump-start language development.
   family and other factors contributing to risk for, and resilience 
                 against adverse developmental outcomes
    Risk and resilience to adverse developmental outcomes is a major 
focus of the NICHD's research program. In order to target interventions 
to children at the highest risk (e.g. not all children growing up in 
poverty have poor developmental outcomes), and to develop the most cost 
effective preventative interventions, researchers at the Civitan Center 
at the University of Alabama at Birmingham have studied the nature of 
family, social and cultural risk and resilience factors that are 
predictive of children's developmental outcomes. Cultural differences 
in child rearing practices suggest that practices which may be 
problematic under one set of circumstances, can lead to positive 
developmental outcomes in another. Over the coming years, we recommend 
more attention be paid to precisely delineating these individual, 
family, community and cultural factors that contribute to resiliency or 
increase susceptibility to adverse developmental outcomes, and how we 
can translate that information into more effective early intervention 
procedures.
                  destructive and repetitive behavior
    Fortunately, most people with mental retardation or related 
developmental disabilities do not have serious behavior problems. But 
aggression, property destruction and self injury are disproportionately 
related to developmental disabilities. The human suffering and economic 
cost associated with destructive behavior of people with developmental 
disabilities are staggering. Among people with certain disabilities, 
behavior problems are ubiquitous, e.g. Autism and ADHD. The co-
occurrence of behavior problems and mental retardation leads family 
members, doctors, teachers and other caregivers to seek improved and 
more cost-effective treatments for unresolved problems. Researchers at 
the University of Kansas MRRC at Lawrence have examined the use of 
psychotropic medications to treat severe behavior problems of adults 
with mental retardation, and scientists at the University of California 
at Irvine, and Kennedy Center at Vanderbilt University have developed 
cost-effective medication treatments for self injury in autism and 
other developmental disabilities with a very high success rate.
    Major advances have been made in the development of a newer 
generation of safer medications to manage some of these behavior 
problems. Regrettably there is very little published research regarding 
the effectiveness of these newer ``atypical'' neuroleptics, 
antidepressant and mood disorder medications in treating individuals 
with mental retardation and developmental disabilities. Far more 
emphasis needs to be placed on targeted initiatives to promote research 
on these important and timely topics. It is now apparent that even 
similar appearing destructive behavior exhibited by individuals with 
disabilities may have very different underlying causes, and 
correspondingly require different treatments. In the coming years, 
research on the sources of individual and group differences in 
responsiveness to treatments should be a major focus of these efforts.
                      summary and recommendations
    As you can see Mr. Chairman and members of the Committee, the NICHD 
and the scientists it supports, have made significant contributions 
toward preventing disabilities and developing new treatments for 
problems associated with mental retardation and related developmental 
disabilities.
    With your continued support in the areas indicated above, we 
believe the NICHD in partnership with scientists in the MRDDRCs and 
other research centers will continue to reduce the burden on families, 
schools, doctors and others with responsibility for the care, education 
and treatment of individuals with developmental disabilities.
    We are grateful for your continued support and ask that you 
continue efforts to double the NIH funding by the year 2003 and 
appropriate, for fiscal year 2000, 15 percent increase to the NIH 
overall and fund the National Institute of Child Health and Human 
Development at $915 million. This increase, also supported by the 
Friends of NICHD Coalition, will help us to continue our research into 
the causes and cures of mental retardation and developmental 
disabilities and, in turn, to better the lives of those living with 
such conditions.
                                 ______
                                 
Prepared Statement of Donna Ledder Meltzer, Chairman, Friends of NICHD 
                               Coalition
    Mr. Chairman and Members of the Committee: I am pleased to be able 
to submit to you this testimony on behalf of the Friends of the 
National Institute of Child Health and Human Development (NICHD), a 
coalition of nearly 100 organizations that support the extraordinary 
work of the National Institutes of Health with a special focus on the 
National Institute of Child Health and Human Development. Our coalition 
is now in its 13th year and includes in its membership scientists, 
health professionals, and advocates for the health and welfare of 
women, men, children, adolescents, families, and people with 
disabilities. Pursuant to clause 2(g)4 of House Rule XI, the coalition 
does not receive any federal funds.
    As you know, the NICHD recently celebrated its 35th Anniversary and 
the Friends Coalition again thanks you for your support in serving as 
an honorary co-host of the Coalition's Scientific Exhibition and 
Reception held on June 3, 1998. This event featured presentations by 15 
researchers or groups of researchers whose work is funded by the NICHD. 
We believe that this event gave us a chance to show you and your 
Committee where the appropriated dollars for NICHD are going and how 
wisely they are being used.
    As the NICHD begins work in its 36th year, it can look back on a 
rich history and an impressive record of achievement, conducting and 
funding research on the prevention and treatment of many of the 
nation's most devastating health problems: infant mortality and low 
birthweight, unintended pregnancy, birth defects, mental retardation 
and other developmental disabilities, and pediatric AIDS. However, 
support is needed to continue progress. The Friends of NICHD Coalition 
respectfully requests that the NICHD be funded for fiscal year 2000 at 
$915 million and we concur with the Ad Hoc Group for Medical Research 
Funding that the NIH overall must receive a 15 percent increase to 
remain on track for doubled funding by 2003.
    Anne Frank, in her famous diary said, ``How lovely to think that no 
one need wait a moment. We can start now, start slowly, changing the 
world.'' I believe that this statement rings true for scientific 
research and its possibilities and hopes for the future. Scientific 
research is an investment over time. It begins slowly with the 
discovery of a gene, an atom, a chromosome and grows until it results 
in finding a cause or a cure for a devastating disease or disability. 
And, when a cure is discovered, it dramatically changes the world.
    I am proud to be able to share with you today some of the ways in 
which NICHD has changed the world and, with continued strong 
congressional financial support, will keep changing the world.
                       how the world has changed
    Hemophilus influenzae type b meningitis, once feared as the leading 
cause of acquired mental retardation for our children, will not be seen 
again as it has been eliminated by vaccine technology developed by 
NICHD intramural scientists.
    Mental retardation due to phenylketonuria (PKU), congenital 
hypothyroidism, jaundice, measles, and rubella will also be left behind 
as a relic of the past due to research discoveries that prevent these 
conditions.
    Fear of maternal death in childbirth, that occurred in one percent 
of all pregnancies as we began the current century, has all but 
disappeared for American women as we begin the next century, due to 
better pregnancy management and control of hemorrhage and infection.
    The potential for social isolation and mistreatment of persons with 
mental retardation and physical disabilities has greatly diminished 
because of NICHD research, which has improved ways to teach, manage 
behavior, increase mobility, and change public attitudes toward people 
with disabilities.
    Infertility, which has left couples unable to have children of 
their own, now have access to a wide range of techniques to diagnose 
newly discovered causes of infertility, and to numerous treatment 
options to help them have their own children.
    The prospect of having an infant die before its first birthday has 
been reduced by seventy percent since NICHD was founded. This is due 
primarily to new ways developed by the NICHD to treat or prevent 
respiratory distress syndrome and manage premature infants, and the 
Back to Sleep Campaign that has cut SIDS death by 50 percent in just 
five years.
    And, gone are the days when a woman infected with AIDS could not 
protect her baby from the infection. NICHD and the National Institute 
of Allergy and Infectious Diseases (NIAID) have developed ways to 
reduce the rate of virus transmission from mother to infant from 
twenty-five percent to two percent.
          how the nichd is continuing work to change the world
    Childhood Development and Degenerative Brain Disorders.--The NICHD 
has substantially increased its efforts to develop and apply 
noninvasive neuroimaging technology to better understand both the 
normal and atypical development of the developing brain and nervous 
system. NICHD currently supports eight major research sites that are 
carrying out both structural and functional neuroimaging with normal 
children and children with learning disabilities, dyslexia, and 
attention disorders. At three of these sites, functional neuroimaging 
studies are being conducted with children before, during, and after 
they receive intensive intervention for reading disabilities. These 
studies are the first of their kind, and will provide information about 
the functional plasticity of the developing brain, and changes that 
occur in the brain as cognition, language, and reading improve.
    In the NICHD/NIDCD Network on the Neurobiology and Genetics of 
Autism, ten Collaborative Programs of Excellence in Autism (CPEAs) are 
studying brain structure and function in patients with autism and 
related disorders. Functional brain imaging is being used in eight 
projects to see how persons with autism process sensory input such as 
sound, vision, and touch. Structural imaging studies in one project are 
assessing changing in brain mass throughout development to determine if 
there is an ongoing degenerative process that could be potentially 
treatable. In an additional five projects, structural and functional 
imaging is being used to study brain development and function in 
disorders such as Williams' Syndrome, Lesch-Nyhan disease (a self-
mutilating disorder), Rett Syndrome, intracranial hemorrhages and 
preterm babies and fetal brain injury in children. Data from these 
imaging studies are being combined with neuropathological studies using 
tissue from NICHD-funded brain banks that specialize in pediatric 
disorders to yield unique insight into childhood brain disorders.
    A significant need in the development of a pediatric neuroimaging 
research program is the establishment of a normative data base for both 
structural and functional neuroimaging applications with children. 
Within this context, the NICHD, NIMH, and NINDS are collaborating on 
two major contractual research programs. One is to obtain data on 
normal structural (anatomic) brain development in children from birth 
to 18-years-of-age, and a second program is to obtain data on normal 
neurophysiological (functional) development in children. It is 
anticipated that several Pediatric Structural Neuroimaging Study 
Centers will be in operation by fiscal year 2000, with Pediatric 
Functional Neuroimaging Study Centers on line by fiscal year 2001.
    Infertility and Contraceptive Research.--For more than three 
decades, NICHD has been one of the world's leaders in the research and 
development of new contraceptive drugs and devices. Rather than 
diminishing, its role has become even more important in recent times. 
Women and their partners who seek to avoid unintended pregnancy, and 
increasingly, sexually transmitted diseases and HIV/AIDS, need methods 
which are safe, effective, easy to use and inexpensive. For a variety 
of reasons, the private sector has not stepped forward to meet these 
needs. NICHD must have adequate funding to continue to make its 
critical contribution in this area, particularly in its efforts to 
develop a microbicidal preparation that would offer protection against 
both STDs and pregnancy.
    The National Longitudinal Study of Adolescent Health (ADD 
Health).--NICHD is the lead agency on one of the most exciting and 
informative studies ever developed on adolescent behavior, know as ADD 
Health. Authorized by Congress in 1993, the study has followed a large 
group of adolescents over a period of several years to determine the 
causes of various risk taking behaviors that may eventually have a 
heavy impact on their overall health. Analysis of the findings have 
begun, so far yielding invaluable information on family and school 
networks' and communities' effects on the behavior of teenagers. With 
adequate funding, researchers funded by NICHD can take advantage of a 
one-time-only opportunity to learn about these young people once again 
as they reach young adulthood.
    Fragile X.--Fragile X is the most common inherited cause of mental 
retardation and results from the failure of a single gene to produce a 
specific protein. Tremendous progress has been achieved in developing 
and characterizing animal models for Fragile X which have already 
provided insight into synaptic (nerve junction) abnormalities and the 
functional consequences. NICHD recently co-sponsored with FRAXA 
Research Foundation a special workshop of clinical and basic scientists 
from the Fragile X field and related areas where research in the 
pathophysiological basis, screening and diagnosis of this disorder were 
discussed and treatment strategies and future research directions were 
formulated. The NICHD Pediatric Pharmacology Research Units (PPRUs) 
Network will expand its scope to include psychopharmacology clinical 
trials which could admit individuals with Fragile X in the PPRUs.
    Learning Disabilities.--The federal government has recently focused 
a large effort to create a society of readers and adopted the largest 
budget ever for education expenditures. Yet, children and adults with 
learning disabilities (LD) still struggle to compete in school and in 
the workplace. In an effort to change the stigma attached to learning 
and reading disabilities, NICHD has also placed a high priority on 
learning disabilities research. Currently, the NICHD supports research 
on learning disabilities, reading development, reading disability, and 
reading instruction at 36 research sites located in 18 states and the 
District of Columbia. To date, NICHD-supported scientists have studied 
34,501 children and adults, including 21,860 skilled readers and 12,641 
disabled readers. In addition, over 3,000 children with learning 
disabilities in reading, mathematics, written language, and attention 
disorders have been enrolled in research studies. For these studies, 
over 2,500 research articles, books and chapters have been published 
and provide the scientific and educational communities with critical 
information relevant to early identification and intervention, 
prevention, prevalence and developmental course, as well as the 
development of remediation programs for older children, adolescents, 
and adults with reading and other learning disabilities. NICHD program 
scientists have presented reading research findings to the leadership 
in several states and have collaborated with states to develop early 
intervention and prevention programs for children who are at-risk for 
reading failure. Among these states are California, Connecticut, 
Illinois, Mississippi, New York, Pennsylvania, Vermont and Wisconsin. 
The NICHD has also recently increased its efforts to identify critical 
language and cognitive factors that are involved in the development of 
mathematics abilities in children.
    Demographic Research.--Also integral to the scope of work at NICHD, 
is Demographic Research which provides objective, policy-relevant 
scientific information about our population trends. Most recently the 
NICHD has initiated research on poor families and neighborhoods, 
adolescent health, welfare-to-work transitions, and child care. The 
Institute's leadership in developing new data and research on 
fatherhood will help to fill a serious gap in our understanding of 
family formation, family strengths, the development and well-being of 
children.
    Sudden Infant Death Syndrome (SIDS) Research.--Last year we were 
proud to report to you that through NICHD research and collaboration 
with the Back to Sleep Campaign, infant deaths due to SIDS has 
decreased by 50 percent. From its inception, the Back to Sleep campaign 
has focused on reaching parents and caretakers of all newborns with the 
goal of having 90 percent or more of healthy infants between one month 
and one year of age sleeping on their backs. However, data indicates 
that there is still a higher number of cases among minority families. 
Therefore, NICHD has initiated several new dissemination efforts as 
well as collaborative projects targeted to specific areas. One such 
project focuses on the Aberdeen Area and is a collaborative study 
between NICHD, the Indian Health Service, the CDC and the Aberdeen Area 
Tribal Chairman's Health Board. Investigations into the causes of, and 
risks for, the high rate of infant mortality among the Northern Plain 
Indians of the Aberdeen Area demonstrated high rates of cigarette 
smoking and alcohol use among pregnant women. Analyses are now focusing 
on the contributions of these risks to the number of SIDS deaths among 
the population.
    The Chicago Infant Mortality Study, conducted in collaboration with 
the CDC in Chicago, Illinois, examines environmental, behavioral, and 
medical risk factors for sudden infant death in a high risk, 
predominantly African American, inner city community. These analyses 
are focusing on the hazards in the sleep environment that should be 
targeted in public health campaigns.
    In addition to these studies and others, NICHD is also engaging in 
research on the efficacy of a monitoring device that is designed to 
detect episodes of breathing and heart dysfunction while an infant is 
sleeping. It is hoped that all of these collaborative efforts and 
studies will help NICHD reach its goal of 90 percent in the very near 
future.
    Women's Reproductive Health Initiatives.--As we approach the 21st 
century, NICHD's research will lead to additional advancements to 
protect and improve the health of women throughout their lifetime. 
Women's health research has implications in clinical practice, disease 
prevention, health promotion, and medical education. NICHD's research 
efforts to date have proven that the proper health management of women 
of childbearing age leads to the delivery of healthier infants and 
improvements in the health of women throughout their life-span. With 
increased support, NICHD can target additional areas of study, such as: 
intensified research in women's health throughout the life-span 
including women in the perimenopausal and postmenopausal years who have 
specific health problems and concerns; increased research in obstetrics 
and gynecology including funding support for new Women's Reproductive 
Health Research Career Development Centers to provide OBGYN training to 
assist them in pursuing research careers; and finding answers and 
solutions for preterm labor which still accounts for approximately 75 
percent of newborn deaths that are not related to birth defects and 
leads to many long-term health complications for women.
    Behavioral and Social Sciences.--We all worry about the 
environment--what we and our children breath, drink, eat and are 
otherwise subjected to in our daily life on planet Earth. NICHD is 
concerned too and worries that a decaying urban environment can have 
enormous implications on human growth and development. The NICHD has 
developed an initiative titled, ``The Science and Ecology of Early 
Development'' that is designed to better understand the effects of 
poverty and behavioral, social, emotional, biological, neurobiological 
and genetic factors in early childhood development. In addition, the 
NICHD is currently supporting functional neuroimaging studies that 
provide a window to brain development and change in children reared in 
poverty as they receive early reading and language interventions. The 
information derived from these studies will help us understand the 
plasticity of the brain during different times in development, and the 
specific types of behavioral interventions that can improve neural 
functioning.
    Mr. Chairman, as you can see, NICHD has been working overtime to 
advance on the vast array (and we've only highlighted a few!) of 
research that is needed. The past 36 years has been a watershed of 
knowledge and progress. But there remains much work to do. We commend 
you for your steadfast commitment to medical research and we urge you 
and your committee to take any and all actions necessary to continue 
progress toward doubling the NIH's funding by 2003. In addition, we 
urge you to increase the funding for NICHD specifically, an Institute 
with an impressive record and huge workload but one that has lagged 
behind other Institutes in its funding levels. Again we thank you, Mr. 
Chairman and the Committee for your support and thank you for this 
opportunity to share comments.
                                 ______
                                 
     Prepared Statement of the American Association of Blood Banks
    The American Association of Blood Banks (AABB) is pleased to offer 
this statement in support of increased funding for the National 
Institutes of Health (NIH), the National Heart Lung and Blood Institute 
(NHLBI) and transfusion medicine research. The AABB thanks Congress for 
recognizing the immense value of NIH and federal biomedical research 
efforts. We urge Congress to continue on the path toward improving the 
nation's health by supporting a 15 percent increase in NIH funding for 
fiscal year 2000. Last year, following the leadership of Chairman 
Specter and others, Members of Congress acknowledged the importance of 
doubling the NIH budget over five years. A 15 percent increase, which 
is supported by the Ad Hoc Group for Biomedical Research Funding, is 
necessary if we are to reach this common goal.
                the american association of blood banks
    AABB is the professional society for over 9,000 individuals 
involved in blood banking and transfusion medicine and represents 
approximately 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 and blood components. AABB members are responsible for virtually 
all of the blood collected and more than 80 percent of the blood 
transfused in this country. For over 50 years, the AABB's highest 
priority has been to maintain and enhance the safety of the nation's 
blood supply.
    The AABB has also been a strong supporter of transfusion medicine 
research. A program of the AABB founded in 1983, the National Blood 
Foundation (NBF), supports patient and donor care through scientific 
research, operational studies and public education. Recognizing the 
need for innovative research, the NBF has awarded over $2.2 million in 
grants to scientific investigators in the blood sciences. Committed to 
enhanced research in transfusion medicine, the AABB firmly believes 
that additional federal support for research is vital to the nation's 
efforts to ensure a safe and adequate blood supply.
  research leads to safer blood supply and improvements in lifesaving 
                          transfusion medicine
    Today, the nation's blood supply is safer than it has ever been. 
Each year, over 23 million units of blood components are transfused 
into approximately four million individuals. Transfusion medicine 
benefits a diverse group of millions of Americans, including 
individuals battling life-threatening diseases such as cancer and heart 
and lung disease, newborns requiring intensive care, accident and burn 
victims, and patients requiring surgery or transplants. Improvements in 
blood safety and transfusion medicine are a direct result of both 
public and private support for biomedical research in this critical 
area of medicine.
    With continued and enhanced federal support for research and the 
NHLBI, transfusion medicine promises new, life-saving blood-related 
therapies as well as an even safer blood supply in the United States. 
We have outlined below certain research areas that offer particular 
promise in improving the health of individual Americans as well as the 
overall safety of the nation's blood supply. The AABB strongly 
encourages Congress and the NIH to support such research initiatives.
improved donor screening and testing to prevent transfusion-transmitted 
                               infections
    The estimated risk of transfusion-transmitted HIV is now only one 
in 676,000 transfusions and only one in 103,000 transfusions for 
transfusion-transmitted hepatitis C virus (HCV). 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 infections remains a top 
priority of transfusion medicine researchers and all recipients of 
blood. The AABB urges the NIH to continue research into the development 
of enhanced infectious disease tests and donor screening methods to 
improve further blood safety. The Association also encourages NHLBI's 
continued surveillance of emerging infectious diseases
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.
    However, additional research is needed to refine and validate donor 
screening protocols. A report of the NHLBI funded Retrovirus 
Epidemiology Donor Study published in 1997 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. 
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.
    Moreover, as noted during a recent meeting of the Food and Drug 
Administration (FDA) Blood Products Advisory Committee, behavioral 
research is needed to ensure optimum donor comprehension of screening 
questionnaires and, whenever possible, to simplify the questionnaires 
so as not to discourage individuals from donating. The AABB recommends 
NHLBI support research to improve upon donor screening methods.
Blood screening tests
    Blood screening tests have improved dramatically, allowing for more 
accurate and timely detection of several infectious diseases, including 
AIDS and hepatitis C. These tests are, however, not perfect. There is a 
``window period'' of time between when a donor is infected with a viral 
disease and the time when the test can detect the infection. With 
research advances and new, improved tests, the window periods for HIV 
and HCV have decreased notably. However, until very recently, decreases 
in the window period have been limited by the fact that blood screening 
tests have detected the presence of the antibodies produced in response 
to the targeted virus, rather than the virus itself.
    To improve infectious disease tests by further shortening the 
window periods, the NHLBI has funded valuable research into the use of 
nucleic acid amplification technology (NAT) for the detection of the 
genetic material of viruses that cause AIDS and hepatitis C. As a 
result of this and other research, new NAT testing (currently under 
INDs from the FDA) is being introduced with the promise of decreasing 
the window period for HIV by roughly 10 days and, even more 
substantially, for HCV by roughly 10 to 30 days. The AABB recommends 
that Congress and NHLBI support additional research into further 
improved blood screening tests to detect blood-transmitted diseases.
                      peripheral blood stem cells
    Research has led to the discovery of additional blood-related 
therapies beyond the more traditional transfusion of whole blood or 
components. Some of the most exciting medical advances in recent years 
have involved the use of hematopoietic progenitor stem cells (HPCs). 
HPCs are harvested from peripheral blood using a process known as 
apheresis. A single HPC can produce red blood cells that carry oxygen, 
white blood cells that fight disease and platelets that stop bleeding. 
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, HPCs may also become the ultimate vehicle for curing diseases 
through gene therapy.
    In addition to peripheral blood, another source of HPCs is the 
blood remaining in the placenta and umbilical cord after delivery of 
newborn babies. The AABB has strongly supported NHLBI's efforts in 
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 has 
already begun to lead to new findings regarding the clinical efficacy 
of cord blood stem and progenitor cell transplants.
    Recently, the NHLBI and National Cancer Institute have discussed 
plans to establish a national network of clinical trials studying HPC 
transplants. The AABB believes increased national support for this 
research, including issues relating to the collection and processing of 
HPCs, is warranted. A variety of both biological and technical issues 
surrounding HPC transplants 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 HPCs. The AABB supports basic and applied HPC research.
                       immunology of transfusion
    Even absent transmissible diseases, because transfused blood 
components are recognized as foreign substance by the human body, blood 
transfusion can produce adverse changes in the body's natural immune 
defenses. Changes include the potential for decreasing the natural 
defenses of blood recipients in their fight against bacterial infection 
and preventing or decreasing the incidence of cancer recurrence. 
Fundamental basic research by transfusion medicine specialists is 
needed to gain vital knowledge on how to combat this adverse aspect of 
blood transfusion. Transfusion researchers are also poised to make 
great strides in understanding the molecular biology and function of 
blood cell antigens.
    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 possible 
avenue of research. The AABB urges the Subcommittee to support research 
to investigate transfusion-related immune responses.
   the role of biological response modifiers in transfusion reactions
    Clinical and experimental studies have identified several 
substances released by human cells which play a significant role in 
altering a patient's response to transfusion. These adverse responses 
(known as transfusion reactions) range from fever, hives, shaking, and 
chills to sever allergic reactions, shock and even death. Transfusion 
medicine researchers now know far more about these families of 
biological response modifiers, which include histamine, complement, 
cytokines, bradykinin and other biologically active molecules. Studies 
of the role of these mediators in adverse reactions to transfusion, and 
research into how to modify and control these response modifiers is 
needed. Basic and clinical research in these areas will provide a 
fruitful avenue for improving the safety of blood transfusion for adult 
and infant transfusion recipients alike.
  centers of excellence for transfusion medicine research and training
    Improving transfusion medicine research training and its clinical 
research infrastructure is vital to furthering transfusion medicine 
research productivity. Such an infrastructure is currently nonexistent. 
Medical students need to be encouraged and provided needed training to 
enter transfusion medicine. In addition, better coordinated, national 
clinical trials could prove invaluable in improving patient care and 
increasing blood donations. Accordingly, the AABB strongly supports 
development of a system of linked Centers of Excellence for transfusion 
Research and Training. Such centers could provide the critical mass of 
resources needed to accomplish NIH/NHLBI sponsored research initiatives 
in the transfusion medicine areas outlined above.
                                 ______
                                 
                             Health Issues
  Prepared Statement of the American Association of Nurse Anesthetists
    The American Association of Nurse Anesthetists is the professional 
association that represents over 27,000 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 more than 65 percent of the anesthetics given to patients 
each year in the United States. CRNAs are the sole anesthesia provider 
in at least 65 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.
    CRNAs have been a part of every type of surgical team since the 
advent of anesthesia in the 1800s, and 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 licensing 
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 that 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 82 accredited nurse anesthesia education 
programs in the United States, all of which are required to offer a 
master's degree.
              the health professionals scholarship program
Are there enough providers to meet the goals?
    The Health Professionals Scholarship program was created to address 
certain needs of the population, including increased access to primary 
care, increased access in rural and underserved areas, and improved 
distribution of providers. But before we can begin to focus on the 
goals of the Health Professionals Scholarship Program, there must be 
assurances that our programs are producing enough graduates to serve 
the population as a whole.
    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. 
Yet the same is not true for other health care professions. The surplus 
of physicians does not necessarily translate to a surplus of all 
providers. Nurse anesthesia programs across the country have 
stabilized, not increased, in the number of graduates produced each 
year, averaging approximately 900-1000 new nurse anesthetists entering 
practice annually.
    Data have shown that a continued supply of 1000 graduates per year 
will provide the country with a stable, adequate source of anesthesia 
providers. Previous research by Michael Fallacaro, CRNA, DNS, Professor 
and Chair of the Nurse Anesthesia Department, School of Allied Health 
Sciences at Virginia Commonwealth University, established that the 
current ratio of approximately 8.5 CRNAs per 100,000 population is 
adequately meeting societal demands. In addition, his research showed 
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. 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.
What are the goals of the Health Professionals Scholarship Program, and 
        how does an investment in CRNA education help to achieve them?
    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.
    The current authorization, the Health Professions Education 
Partnerships Act of 1998, establishes preferences and goals for the 
program to achieve. Specifically there is an interest by Congress to 
improve the access to and distribution of providers in rural and 
underserved areas. The investment in the education of nurse 
anesthetists would assist in achieving this goal.
    CRNAs are the sole providers of anesthesia in at least 65 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.
    Continued research by Fallacaro has shown that urban areas still 
retain far greater percentages of anesthesia providers. The data vary 
widely from state to state depending on its makeup; however, the 
conclusions are clear. The national average for CRNAs is 81.3 percent 
practice in urban areas, compared to 18.7 percent in non-urban areas. 
For anesthesiologists the numbers show an even more significant 
difference, with a mere 7.8 percent residing in rural areas. Clearly 
this shows that while urban areas have more anesthesia providers, the 
rural areas are predominantly served by CRNAs.
    It is likely that the problem of distribution will only get worse, 
as an aging CRNA population is concentrated more in non-urban areas 
than in urban. Looking at the CRNA population as a whole, approximately 
19 percent provide services in non-urban areas. Focusing solely on the 
CRNA population aged 55 and older, approximately 29 percent provide 
services in non-urban areas. This indicates that a disproportionate 
number of CRNAs in rural areas are aged 55 or older. As these CRNAs 
retire, it remains unclear what will happen to anesthesia services in 
those areas without continued incentives such as the Health 
Professionals Scholarship Program.
    Access to anesthesia services is critical to the health of patients 
in rural and underserved areas. The Health Professionals Scholarship 
Program, and specifically the investment in the Nursing Workforce 
Development section, will help maintain a stable supply of anesthesia 
providers for these areas.
    report language regarding the hcfa proposed rule on supervision
    As the committee is aware, the conference report to the fiscal year 
1999 Omnibus Appropriations bill contained language dealing with nurse 
anesthetists. Specifically, there was language which referenced a 
proposed rule issued by the Health Care Financing Administration (HCFA) 
that deferred to state law on the issue of physician supervision:
    ``The conference agreement recommends the Secretary base retaining 
or changing the current requirement of physician supervision of 
anesthesia services in Medicare on scientifically valid outcomes data. 
Concern has been expressed regarding HCFA's proposed elimination of 
this requirement which has been in effect since the inception of the 
Medicare program. The conference agreement further suggests that the 
Secretary request the Agency for Health Care Policy and Research to 
work with HCFA in a design and implementation of an outcome approach 
that would examine, utilizing existing Medicare operating room data, 
mortality and adverse outcome rates by different anesthesia providers, 
adjusted to patient acuity, and other relevant scientific variables. 
This methodology should be developed after consultation with the 
relevant national professional organizations. Nothing in this report 
shall be construed as encouraging, discouraging, or delaying HCFA from 
removing or retaining the current physician supervision requirement.'' 
(Congressional Record, October 19, 1998)
    Similar language also appeared in the Senate Labor-HHS Subcommittee 
report. It is our understanding that the final language in both bills 
was deliberately crafted to be very flexible--flexible enough that HCFA 
and the Department of HHS could move forward with a final rule removing 
the supervision requirement without delay. However, we believe that 
this report language has led to confusion and further delay by HCFA.
    This confusion has come despite the fact that the statement of the 
managers did not mandate, as a matter of law, any further studies by 
HCFA on this issue, nor that HCFA should be impeded from moving forward 
with issuing a final rule regarding the physician supervision issue. 
The AANA would appreciate any assistance the committee could provide in 
order to resolve this confusion.
    As you may know, the current supervision requirement restricts the 
ability of states to determine whether physician supervision of nurse 
anesthetists is necessary, does not improve the quality of care, and 
may inhibit access to services in rural areas. Even taking into account 
the hospital statutes and regulations, there are still nineteen states 
that do not require supervision of CRNAs. In a September 2, 1998 
article in JAMA, Cooper, Henderson, and Dietrich concluded that 
eighteen states permit CRNAs to practice ``independently.'' (Cooper, 
Richard A., Henderson, Tim, Dietrich, Craig L., ``Roles of Non-
Physician Clinicians as Autonomous Providers of Patient Care.'' JAMA. 
1998; 280:795-802 at Page 797, Table Two.) The AANA believes that 
supervision requirements do not improve the quality of care. Proponents 
of mandated supervision argue that it increases quality of care, but 
cite no evidence to support this proposition. All the evidence to date 
shows that the quality of care that nurse anesthetists provide is 
superb, regardless of whether nurse anesthetists are physician-
supervised. In addition, the current federal requirement has acted as a 
disincentive for CRNAs to be utilized. Some surgeons have been 
dissuaded from working with CRNAs, believing they may be subjecting 
themselves to liability for ``supervising'' the CRNA. This is despite 
the fact that the principles governing liability of a surgeon when 
working with a CRNA are the same as those governing liability working 
with an anesthesiologist. Because CRNAs are the sole anesthesia 
provider in 65 percent of rural hospitals, surgeon concerns about 
liability could decrease access to surgical and anesthesia services in 
rural areas.
    Let me state why this issue is important for this subcommittee. We 
are very grateful for the $2.7 million which the Appropriations 
Committee has provided annually in recent years for nurse traineeships 
and new program start-ups. This funding has been critical to ensure the 
continued education of nurse anesthetists throughout the years. 
However, you should know that your investment in the education of nurse 
anesthetists and their profession is impeded by this outmoded federal 
supervision requirement. This outdated HCFA regulation limits the 
ability of health care institutions to fully utilize the services of 
nurse anesthetists. Requiring physician supervision essentially 
discourages the use of CRNAs as anesthesia providers when facilities 
and surgeons can use another provider who does not to be supervised 
according to federal regulations. Given the fact that Medicare 
reimburses CRNAs, federal funds help train them, and the military sends 
them into combat situations, it is clear the federal government 
specifically recognizes the value of nurse anesthetists. If you 
continue to want CRNAs to fill the ever-growing unfulfilled need in 
rural and underserved urban areas, as your funds assist us in doing, 
your assistance in removing this antiquated supervision law could be 
quite helpful.
    In conclusion, the AANA is opposed to any effort that would delay 
or stop HCFA from moving forward and issuing a final rule on this 
issue. Congressmen Weldon (R-FL) and Green (D-TX) have introduced 
legislation, H.R. 632, that would force HCFA to conduct an outcomes 
based study which would constitute an extensive and costly delay for 
HCFA in issuing a final rule removing the supervision requirement. 
There have been numerous studies on this issue already, and another 
study would be a waste of money and time. To be precise, the Centers 
for Disease Control (CDC) chose not to embark on a new multi-million 
dollar study regarding anesthesia outcomes in 1990. Following a review 
of anesthesia data, the CDC concluded that morbidity and mortality in 
anesthesia were too low to warrant the study. H.R. 804, introduced by 
Reps. Jim Nussle (R-IA) and Bill Coyne (D-PA), essentially repeals the 
federal supervision requirement and lets the states make their own 
decision on this issue. We invite your support for that proposal and 
hope, that while it has been referred to another committee of 
jurisdiction, that you will favorably consider its merits, particularly 
in the context of anything which might be done in the appropriations 
process that addresses this issue.
    The AANA looks forward to working with this committee, in whatever 
way that may be appropriate, to seek the issuance of a final rule that 
defers to state law on the issue of physician supervision.
                  recommendations for fiscal year 2000
    The nurse anesthesia community would appreciate and certainly 
utilize a substantial increase in funding, but recognizing the 
budgetary constraints faced by this Committee we would recommend 
continued federal funding for the Health Professionals Scholarship 
Program at the level of $316 million, which is a 4 percent increase 
over the fiscal year 1999 level. Included within the Health 
Professionals Scholarship Program, we are requesting that a minimum of 
$67.8 million be specifically designated for the Nursing Workforce 
Development section, which would allow for a minimum of $2.761 million 
for nurse anesthesia education.
    In addition, AANA is hopeful that the Subcommittee, and Congress, 
will take another look at the issues surrounding the HCFA proposed rule 
that defers to state law on the issue of physician supervision of nurse 
anesthetists. The language included in the conference report to the 
Omnibus Reconciliation Bill for fiscal year 1999 has led to confusion 
and delay, and needs further clarification.
    Thank you for your consideration of our concerns. If you need 
further information, please contact David E. Hebert, AANA Director of 
Federal Government Affairs at 202/484-8400.
                                 ______
                                 
  Prepared Statement of the Judge David L. Bazelon Center for Mental 
                               Health Law
    The Judge David L. Bazelon Center for Mental Health Law praises 
Chairmen Arlen Specter and Members of the Senate Appropriations 
Subcommittee on Labor, Health and Human Services and Education for 
holding hearings to explore the longstanding problems regarding the use 
of restraints and seclusion in psychiatric facilities. The use of 
restraints and seclusion have led to trauma, injury and death for many 
of our most vulnerable children and adults in these settings across the 
country.
    The Bazelon Center commends Senator's Joseph Lieberman and 
Christopher Dodd and Representatives Diana DeGette, Rosa DeLauro and 
Pete Stark for introducing legislation in both the Senate and the House 
to establish national standards for the use of physical and chemical 
restraints and seclusion. These long overdue standards would only allow 
the use in emergency situations for the immediate physical safety of 
the patient or others and only upon the written order of a physician. 
Although the bills vary in the protections they provide, all are 
positive steps toward creating procedural and substantive safeguards 
and reporting requirements governing the use of restraints and 
seclusion.
    The Bazelon Center, through precedent-setting litigation, public 
policy advocacy and technical support to lawyers and other advocates, 
works to define and uphold the rights of children and adults with 
mental disorders who rely primarily on pubic services. It is because of 
this mission that we raise our concern about the inappropriate, 
excessive, and, at times, deadly use of restraints and seclusion.
    We have been concerned about this issue for sometime and continue 
to advocate for restraint-free facilities. Now, with the recent reports 
of deaths highlighted by the Hartford Courant newspaper articles we 
hope the significance of these tragedies will be fully recognized by 
legislators. It is critical that the Committee also explore the 
extensive trauma that consumers experience from the use of restraints 
and seclusion. We strongly advise the Committee to bring this issue to 
the awareness of all Members of Congress in hopes of building 
bipartisan support to enact strong protections. Now is the time to 
restore confidence in mental health treatment, free from harm.
    Also with our support for the legislative proposals, we are also 
providing recommendations on the use of seclusion and restraints. In 
addition, we have outlined the Health Care Financing Administration's 
(HCFA) restraint and seclusion requirements addressed in the preamble 
to their proposed regulations on Hospital Conditions of Participation: 
Provider Agreements and Supplier Approval (Friday, December 19, 1997 
Federal Register, Vol. 62, No.244). We feel the language of the 
preamble is very effective in seeking to reduce the use of restraints 
and seclusion and should be incorporated into the body of the rule.
    Under the proposed HCFA rule:
  --Seclusion or restraints may only be used to the extent authorized 
        by the signed order of a physician. Written authorization must 
        include the date and time of the order, and the reason for 
        seclusion or restraint. For restraint, the order must include 
        the type of restraints(s) and the number of restraint points.
  --Each order for seclusion or restraints must be in writing, must be 
        time-limited and specify start and end times. Implementing a 
        time-limited order does not require applying the intervention 
        for the entire period if the patient demonstrates a reduction 
        or change in the behavior that led to being placed in the 
        restraint or seclusion.
  --A renewal order may be issued if the physician clinically assesses 
        the patient face to face and determines that seclusion or 
        restraint continues to be necessary to prevent injury to self 
        or others, and there is no less restrictive method of 
        preventing the injurious behavior.
  --Orders for seclusion or restraint must never be written on a 
        standing or as needed basis.
  --Written orders for restraint and seclusion for adults must be valid 
        for no more than six hours; written orders for restraint and 
        seclusion for children and adolescents must be valid for no 
        more than 2 hours.
  --A patient in seclusion or restraint must be checked by a person 
        trained in the use of restraints and seclusion at least every 
        15 minutes for comfort, body alignment, circulation, hydration, 
        feeding, and toilet needs. A patient in seclusion or restraint 
        must have vital signs checked a minimum of every 2 hours. 
        Written documentation of checks must include, at a minimum, the 
        name of the person doing the check, the date and time of the 
        check, and the patient's condition.
    We support the requirements described above and also recommend the 
following:
  --All patients have the right to be free from seclusion and 
        restraints.
  --Restraint and seclusion are not treatment; they should only be 
        allowed in emergencies which present imminent danger of 
        significant physical injury to the patient or others, and only 
        upon the written order of a physician.
  --Restraint includes chemical as well as physical restraints.
  --Seclusion and restraint should never be used in combination.
  --Staff should be trained appropriately in the use of restraints and 
        seclusion.
  --All reports of death and serious injury should be made available to 
        the state protection and advocacy system (P&A) within 2 hours 
        so that they may investigate and discern which incidents 
        require prosecution.
  --Stiff penalties for failure to comply, including monetary fees and 
        loss of federal funding.
  --The patient's health care agent, or a family member, if involved, 
        and the P&A should be notified within 2 hours when restraints 
        and seclusion are used on the patient.
  --Use of seclusion and restraints should be limited to the duration 
        of the actual emergency.
  --No physical restraint or seclusion method that causes pain or 
        physical discomfort should be used.
  --Hospitals should be required to collect and report data, including 
        data on the use of seclusion and restraint and patient injuries 
        and deaths.
  --The facility should be required to check if the patient has an 
        advance directive which covers psychiatric emergencies and 
        should follow the patient's wishes as expressed in the advance 
        directive to the maximum feasible extent (for example, by using 
        the medication of the patient's choice or avoiding certain 
        types of restraints--which for patient who have been subject to 
        abuse can be especially traumatizing).
  --The patient's record should document the use of alternative 
        approaches tried prior to the use of restraint or seclusion 
        and/or the clinical rationale for why less restrictive measures 
        were not appropriate.
  --Placing of a patient in seclusion or restraint should by supervised 
        by a medical staff.
  --Seclusion and restraint shall not be used as punishment, coercion 
        or for the convenience of staff.
    Safeguarding and protecting vulnerable children, adults and elders 
in order to preserve, protect and uphold their dignity and human rights 
should be a priority of all Americans. We thank you for the opportunity 
to provide comments.
                                 ______
                                 
  Prepared Statement of William W. Millar, President, American Public 
                          Transit Association
    The American Public Transit Association (APTA) appreciates having 
this opportunity to testify on the fiscal year 2000 Labor, Health and 
Human Services, Education and Related Agencies Appropriations bill.
                  about apta and public transportation
    APTA is a nonprofit international organization that has been 
representing the transit industry for more than 100 years, since 1882. 
APTA's 1,200 member organizations serve the public interest by 
providing safe, efficient and economical transit service, and by 
working to ensure that those services and products support national 
energy, environmental, community, and economic goals. APTA member 
organizations include transit systems; design, construction and finance 
firms; product and service providers; academic institutions, and state 
associations and departments of transportation. More than ninety 
percent of the people who use transit in the U.S. are served by APTA 
member systems.
    APTA submits this testimony before the Labor, Health and Human 
Services, and Education Subcommittee to make the point that public 
transportation can make an enormous difference in how effectively we, 
as a nation, provide people with access to jobs, health care, training, 
and other social services.
    According to the Federal Transit Administration (FTA), 32 million 
senior citizens increasingly rely on transit as their driving ability 
decreases with age; 27 million people with disabilities depend on 
transit to maintain their independence; 37 million people living below 
the poverty level often cannot afford a car and use transit to reach 
their jobs. There are 56 million children under driving age, many of 
whom use transit to travel to and from school and for after-school 
activities.
                                overview
    Public transportation can and does play a critical role in 
providing services to millions of Americans. We ask that in developing 
the fiscal year 2000 Labor, Health and Human Services and Education 
bill, the Subcommittee consider three issues of particular importance 
to public transit. First, APTA requests that the Subcommittee direct 
the Department of Transportation (DOT) and the Department of Health and 
Human Services (DHHS) to complete joint coordination guidelines on 
human services transportation now being developed as soon as possible, 
following the example of the welfare-to-work guidelines. Secondly, we 
urge the Subcommittee to highlight the role that public transportation 
can play in providing cost-effective services for health and human 
service transportation activities. Last, APTA hopes the Subcommittee 
will urge health and human service providers to coordinate their 
transportation activities through the metropolitan transportation 
planning process.
                   dot/dhhs coordination is critical
    APTA strongly supports the initiatives of DOT and DHHS to improve 
coordination in the provision of transportation under social programs 
and health related services. According to the Department of Health and 
Human Services' Health Care Finance Administration's (HCFA) Non-
Emergency Transportation Technical Advisory Group, it is extremely 
important to ``Coordinate, coordinate, coordinate--(and) provide 
opportunities to coordinate, because it is in the best interest of 
community, state, health care, transportation industries and the state 
Medicaid agency to develop coordinated networks of transportation.'' We 
were pleased that such coordination was called for in the fiscal year 
1997 Transportation and Related Agencies and Labor, Health and Human 
Services Appropriations bills. APTA, the Coalition for Paratransit 
Solutions, and others have worked with Congress to encourage this 
collaboration. Both bills directed the Departments of Transportation 
and Health and Human Services to develop joint guidelines for 
coordination of DOT and DHHS transportation services, including joint 
identification of human service client transportation needs and the 
appropriate mix of transportation services to meet those needs; the 
expanded use of public transit services to deliver human services 
program transportation; and cost-sharing arrangements based on a 
uniform accounting system for DHHS program recipients transported by 
Americans with Disabilities Act paratransit systems.
    On July 1, 1998, an ad-hoc advisory panel consisting of 
representatives from various organizations met to advise the DOT/DHHS 
Planning Committee on key considerations and challenges in developing 
guidelines for state and local coordinated planning related to human 
services transportation. The panel focused on several areas, including 
ways that the federal government can create more coordinated planning 
at the state and local levels. The DOT/DHHS Planning Committee was then 
scheduled to issue draft guidelines for public comment last fall. 
Although the Committee is said to have made progress on this 
initiative, we still await guidelines with the hope that they can 
influence how transportation dollars are spent in local communities. 
The joint guidelines will be invaluable in providing policy guidance 
for coordination activities by transportation agencies and human 
service providers at the local level. We urge this Subcommittee to 
direct DHHS and DOT to complete their joint coordination guidelines as 
soon as possible, and to consider the feasibility of involving other 
federal agencies, such as the Department of Labor, in the process.
                                planning
    Others in Congress also recognize the critical importance of 
coordination of these activities. We are pleased to note that the 
largest surface transportation infrastructure investment bill in our 
nation's history, the Transportation Equity Act for the 21st Century, 
(TEA 21) was enacted last summer. That legislation includes two 
provisions that deal specifically with the importance of coordination 
of transportation activities. First, the bill requires DOT to encourage 
metropolitan planning organizations in developing local transportation 
plans to coordinate the design and delivery of transportation services 
by all entities receiving federal funds for transportation purposes. 
Second, another provision requires the Comptroller General to conduct a 
study of Federal departments or agencies that receive financial 
assistance for non-emergency transportation services. APTA eagerly 
awaits the report required by that provision, which should contain 
recommendations for enhanced coordination between DOT and any Federal 
departments or agencies that provide such funding.
      access to health care--the advantage of coordinated services
    We continue to stress the importance of coordination of transit 
service with other government functions because of the great potential 
for saving tax dollars at all levels of government. According to the 
FTA, in four major programs--Medicare, Medicaid, Food Stamps, and 
Unemployment Compensation--each dollar invested in low-cost mobility 
services reduces the transportation cost of these programs by 
approximately 60 percent.
    To lower health-care costs, non-driving outpatients may travel to 
health care by transit. The alternative may be expensive taxi or 
ambulance service. For example, across the nation transit vans carry 
thousands of people to and from dialysis treatment, saving as much as 
$200 to $400 per trip as compared to specialized medical transportation 
services.
    In 1997, HCFA estimated that it was spending approximately $1.2 
billion annually in non-emergency medical transportation. Since then, 
many state Medicaid offices have found waste, fraud and abuse within 
their transportation systems and have improved the delivery of 
transportation services at a reduced cost by coordinating with local 
public transit operators. In fact, 20 percent of the nation's Medicaid 
rides are now provided by public transit.
    In 1994, the Office of Medical Assistance Programs in Oregon began 
a brokerage agreement with TRI-MET, the regional transit authority in 
Portland. At that time, the State estimated that the transit authority 
would provide approximately 37,000 rides per month to Medicaid 
recipients. Today, that total has grown to over 80,000, and 60 percent 
of all Medicaid trips in Portland are provided by bus or light rail. 
This partnership has increased access to health services while cutting 
the cost of non-emergency medical transportation by approximately 15 
percent. Furthermore, State Medicaid officials have credited the 
increase in transit use with reducing problems associated with billing 
abuses. At the same time, TRI-MET has experienced a significant 
increase in revenue due to ridership growth and is considering similar 
arrangements to provide non-medical transportation as well.
    The State of Vermont has proven that it is possible to provide 
cost-effective access to medical services in both rural and urban 
settings. The Vermont Public Transit Association has coordinated 
services with the state Medicaid agency since the inception of the 
program, providing virtually every non-emergency medical trip. 
Statewide, the cost of these trips is as low as $2.83, making Vermont's 
system one of the most economical in the nation.
    Rhode Island is perhaps the best example of what can be 
accomplished when coordination is achieved among human service 
providers and public transit. In that state, 99 percent of all non-
emergency medical travel is provided by the Rhode Island Public Transit 
Authority (RIPTA), which is under contract with five statewide managed 
care plans. The majority of the state's Medicaid recipients are 
enrolled in one of these plans. Remarkably, the state DHHS cost per 
ride is only about fifty cents.
    The North Carolina Department of Transportation and the state 
Department of Health and Human Services have worked together since the 
1970's in providing human service transportation to people with 
disabilities. The state recognizes the value of coordination and the 
desire to avoid institutionalized care whenever possible. North 
Carolina estimates that people who receive care while living at home 
can save themselves, their families and government agencies 
approximately $22,000 in annual costs by avoiding institutionalized 
care. Coordination between 55 human service transportation systems 
throughout the state makes this goal possible.
                            welfare to work
    Transit is also vital to the success of welfare reform. U.S. 
Secretary of Transportation Rodney Slater has said frequently that 
transportation is the ``to'' in welfare to work. The Department of 
Transportation clearly recognizes the need for coordination in this 
area, as evidenced by the joint guidance issued by DHHS and the 
Department of Labor (DOL) in concert with DOT on the use of Temporary 
Assistance for Needy Families (TANF), Welfare to Work, and Job Access 
Grants for transportation purposes. These guidelines encourage states 
to take advantage of existing resources to develop integrated services 
addressing the challenge of moving people from welfare to work.
    In a similar vein, and in response to a request by FTA 
Administrator Gordon Linton, APTA's Executive Committee created the 
``Access to Jobs Task Force'' to assess and coordinate activities 
concerning welfare-to-work issues. The Task Force encourages transit 
systems and businesses to hire welfare recipients and highlights the 
positive role that transit can play in making welfare-to-work a 
success. It also serves as a means to share information on successful 
programs with APTA members and encourages coordination of activities 
between transportation providers, health and human service agencies, 
and private firms.
    The Access to Jobs Task Force conducted a Welfare-to-Work Survey in 
early 1998. More than 200 organizations participated in the survey, 
including 180 transportation providers and 38 businesses and other 
organizations that do not operate transportation service. 
Transportation providers furnished descriptions of new services that 
included supplemental work trip service programs, reverse commute 
programs, special transportation services programs, and vanpool 
programs. The ``Welfare-to-Work Survey Summary Report,'' published in 
October 1998, concluded that coordination and cooperation among welfare 
and employment agencies, social service agencies, metropolitan planning 
organizations, private transportation service providers, neighborhood 
organizations and transit systems is essential for successful programs. 
The survey also noted that the effectiveness of transportation 
solutions depends on:
  --Building on the services a transit agency already provides in order 
        to ensure that existing service is fully utilized for welfare-
        to-work travel;
  --Educating welfare caseworkers and job counselors on the 
        availability of transit options so that they can direct their 
        clients;
  --The availability of funding; and
  --New services, including new routes to employment locations outside 
        the existing service area; more direct service to reduce long 
        trip times; service later at night and earlier in the morning 
        to meet extended hours of many entry level jobs; and increased 
        service in the opposite direction of existing peak service.
    Public transportation is responding to the challenge. The nation's 
public transit systems already provide access to jobs for millions of 
commuters, and are responding in new and innovative ways to provide job 
access for welfare recipients. Some 94 percent of welfare recipients 
who must move into the workforce do not own cars and must rely on 
public transportation to get to work. And while 60 percent of welfare 
recipients live in central cities, the majority of new jobs are in the 
suburbs. Transit operators are working to meet these needs by providing 
special reverse commute and suburb-to-suburb bus, rail and van services 
to match center city residents with suburban jobs.
    For example, Chicago area transit operators Pace, the Chicago 
Transit Authority (CTA) and Metra have developed special reverse 
commuting programs. Let me highlight some successful welfare-to-work 
programs in the Chicago area.
  --For several years, Pace has been working with United Airlines, 
        United Parcel Service, Marriott, Avon and other major employers 
        to design routes to get former welfare recipients to suburban 
        locations. Pace was able to expand its services with assistance 
        of funding from the Illinois Department of Human Services and a 
        grant provided by the federal government under the Congestion 
        Mitigation/Air Quality Improvement Program.
  --Vans used in shuttle operations have recently been provided to 
        employment training agencies for the transportation of job 
        seekers and recent hires to entry-level job sites. Pairing job 
        coaching with volunteer chauffeur responsibilities, these 
        organizations have strengthened the relationships between 
        agency staff and clients while efficiently using available 
        human resources to provide a broad range of services. In a 
        concept extension, a ``homeless-to-work'' shuttle application 
        has been implemented in suburban McHenry County.
    In addition to these innovative programs, the Regional 
Transportation Authority (RTA) and the Illinois Department of Human 
Services have partnered to develop a proposed Transportation 
Information Clearinghouse. In another case, the majority of a $3 
million grant from the Department of Labor to the City of Chicago is 
being used to defer transit costs for eligible TANF recipients who 
locate jobs during their first six months of employment. Additionally, 
RTA and CTA will be conducting training for caseworkers from the 
Illinois Department of Human Services to insure that they are fully 
aware of the scope of public transit services, as well as how to use 
maps, fare cards, and other resources of the system.
    AC Transit in the San Francisco Bay Area initiated a welfare-to-
work pilot program in Richmond, California, by extending bus service 
from 7:00 p.m. to 1:30 a.m., seven days a week. Forty-five percent of 
the households served by that agency have no automobile. Although not 
profitable to the transit agency, this heavily subsidized program has 
proven to be very successful in providing people access to work.
    Finally, the New York Metropolitan Transportation Authority's (MTA) 
Metro-North Railroad, Long Island Railroad (LIRR), and Long Island Bus 
have all pursued the reverse commute market through the addition of 
reverse peak service well before the advent of the welfare-to-work 
effort, carrying a total of 49,000 reverse commuters daily. LIRR and 
Long Island Bus have developed two reverse commute services involving 
distributor buses from LIRR stations. In cooperation with Westchester 
County DOT, local transit operators, and employers, Metro-North is 
providing bus services to corporate work sites where no previous 
service existed. Furthermore, MTA has helped to service the reverse 
commute market by lowering fares for intermediate travel (trips not 
originating or terminating at Grand Central Terminal). MTA also 
introduced unlimited-ride bus and subway Metro Card passes last summer. 
The 7-day pass is ideally suited to welfare-to-work passengers, since 
they are likely to make several trips each day to day care, training 
programs, and of course to work.
                  the americans with disabilities act
    Another national priority in which public transportation plays a 
key role is implementation of the Americans with Disabilities Act 
(ADA). The ADA requires that transit operators offer paratransit 
service, as well as accessible fixed-route service, to persons with 
disabilities. The demand for ADA paratransit service has continued to 
grow, and complimentary paratransit service will still be needed even 
with fully accessible fixed-route service. APTA member organizations 
have worked aggressively to meet the important ADA accessibility goals. 
Virtually all fixed-route bus service and much of the nations' urban 
rail service is accessible. Transit agencies across the nation have 
submitted final plans to insure that they can meet the transportation 
needs of every person with a disability that cannot use fixed-route 
service.
    We cannot, however, meet these growing demands from our traditional 
funding sources alone, and need the cooperation of health and human 
service providers at all levels of government--federal, state and 
local. With more than 95 million trips provided on demand responsive 
public transit in 1998, ADA capital and operating costs are estimated 
to be $1.4 billion annually. Accordingly, APTA urges this Subcommittee 
to continue to provide and encourage flexibility with regard to DHHS 
funding being used to pay for the transportation costs of DHHS clients. 
This is an area where the joint guidelines would go far in ensuring 
DHHS programs retain their commitment to making adequate transportation 
resources available.
                               conclusion
    In closing, we again thank you for this opportunity to bring our 
message about the critical role public transportation can and does play 
in providing services to millions of Americans. We ask that in 
developing the fiscal year 2000 Labor, Health and Human Services and 
Education bill the Subcommittee:
  --Direct DOT and DHHS to complete the joint coordination guidelines 
        on human services transportation now being developed as soon as 
        possible, following the example of the welfare-to-work 
        guidelines;
  --Highlight the role that public transportation can and does play in 
        providing cost effective services for health and human service 
        transportation activities, by providing and encouraging 
        flexibility in DHHS funding being used to pay transportation 
        costs; and
  --Encourage health and human service providers to coordinate their 
        transportation activities through the metropolitan 
        transportation planning process.
                                 ______
                                 
  Prepared Statement of David Davila, M.D., Medical Director, Baptist 
Medical Center--Sleep Disorders Center, Representing the National Sleep 
                               Foundation
    The National Sleep Foundation (NSF) is a science-based, non-profit 
voluntary health organization dedicated to promoting awareness about 
the importance of good sleep, sleep disorders and the consequences of 
sleep deprivation. Our research tells us that nearly 60 million 
Americans at any given time are operating on inadequate sleep. Results 
from the ``Sleep in America'' poll, a nationally representative 
telephone survey conducted by the National Sleep Foundation and 
released earlier this month, show that 40 percent of Americans reported 
being so sleepy during the day that it interfered with their daily 
activities. The toll of sleep deprivation on human health, safety, and 
productivity is enormous. NSF and sleep experts like myself take this 
chronic sleep deprivation very seriously. NSF has been working with 
state and federal governments over the last six years to combat the 
dangers of drowsy driving and fall-asleep crashes through its DRIVE 
ALERT . . . ARRIVE ALIVE campaign.
    Sleepiness--whether the result of untreated sleep disorders or 
simple sleep deprivation--has been identified as a causal factor in a 
growing number of on-the job injuries. Fatigue was cited by 
investigators as a contributing factor in disasters from the Challenger 
Space Shuttle explosion to the grounding of the Exxon Valdez. In fact, 
ten years after the Exxon Valdez disaster, we are still seeing the 
effects on Alaska's economy and environment. While many in the public 
and media tend to focus on reports that the Valdez's captain was 
intoxicated at the time, it was actually a sleep-deprived third mate 
who ran the ship aground in the Prince William Sound. In its official 
report, the National Transportation Safety Board stated, ``The third 
mate's failure to turn the vessel at the proper time . . . probably was 
the result of his excessive workload and fatigued condition, which 
caused him to lose awareness of the location of Bligh Reef.'' Why we 
tend to overlook the obvious--that we are all human and need to get 
good sleep in order to maintain proper alertness on our jobs and in our 
life--is beyond me. The costs to the U.S. economy in lost productivity, 
personal injuries, medical expenses, property and environmental damage 
due to fatigue, sleep disorders and sleep deprivation exceeds $100 
billion each year.
    The National Sleep Foundation is a health organization. While good 
sleep is an important part of overall good health, our primary concern 
is the association between fatigue and the lapses in judgment and 
attention that result in injury. Sleep deprivation is dangerous, but 
preventable. Research conducted in recent years tells us that we can 
identify those people most at risk of sleep deprivation, and indicates 
how we can reduce injury due to fatigue. Unfortunately, fatigue or 
sleepiness is affecting all of us in profound ways in today's 24-hour 
society. In our ``Sleep in America'' poll, 62 percent of those surveyed 
stated that they had driven while drowsy in the past year. Even more 
importantly, 27 percent of adults stated that they had actually dozed 
off behind the wheel of a car in the past year. And an overwhelming 23 
percent of adults in this survey stated that they personally knew 
someone who had been in a automobile crash due to falling asleep at the 
wheel in the past year. These crashes are often deadly and the 
injuries, if the person lives, are severe.
    In Arkansas, we initiated a drowsy driving program called ``Awake 
and Alert in the Natural State,'' which was well received by our State 
Police force and State Highway officials. By targeting people most at 
risk for drowsy driving and implementing effective countermeasures, we 
have begun to raise awareness in Arkansas, but we need help. NSF has 
led the way by building national campaigns like National Sleep 
Awareness Week that took place a few weeks ago and state campaigns like 
Wake Up! in New York State, the Shuteye campaign in California, and 
Heads Up at the Wheel in the Pacific Northwest. We would like to 
suggest to you today that these measures are worth examining more 
closely.
    The NSF encourages you to support a provision of $1.2 million above 
the previous year's appropriation for the development of evaluative 
research, including data collection, through the National Center for 
Injury Prevention and Control at the Centers for Disease Control and 
Prevention. These funds would address sleep deprivation research and 
injury prevention associated with fatigue. I personally know that the 
Arkansas Department of Health would welcome such an expansion.
    It is important to understand what NSF has done and how it is 
working. New York State in conjunction with NSF and other partners has 
taken the lead in conducting research on the scope and nature of drowsy 
driving and in developing effective countermeasures for driver fatigue. 
New York developed a standardized, medically accurate curriculum on the 
risk and prevention of drowsy driving and then used that material to 
provide training for traffic enforcement and safety professionals in 
the state. In Arkansas, NSF would like to model activities in New York, 
introducing other effective countermeasures such as comprehensive 
public awareness campaigns, aggressive programs to install shoulder 
rumble strips on interstate highways, and major initiatives to expand 
and upgrade public rest areas.
    The National Sleep Foundation recognizes the importance of 
addressing fatigue as a public health issue in injury prevention. The 
general public does not understand the relationship between fatigue and 
injury, or the benefits of adequate sleep. Irrespective of educational 
level, 83 percent of adults failed a simple Sleep IQ test consisting of 
11 questions. The National Sleep Foundation encourages the Subcommittee 
to support efforts to quantify the relationship between inadequate 
sleep and injuries through the CDC's National Center for Injury 
Prevention and Control.
    Outreach through community injury prevention programs that involve 
traffic safety and public health organizations have also proven to be 
highly effective in reducing injury. We believe CDC's National Center 
for Injury Prevention and Control--with its emphasis on science as a 
basis for policy and its strong network of state injury prevention 
programs--should serve as the primary federal partner for these 
community programs.
    Thank you for the opportunity to share our perspective with you. 
NSF would like to increase awareness and resources at CDC by requesting 
$1.2 million to address sleep deprivation research and injury 
prevention associated with fatigue. We appreciate the subcommittee's 
consideration of our request. If there are any additional questions on 
this issue, please contact Darrel Drobnich, NSF director of government 
affairs at (202) 347-3471.
                                 ______
                                 
             Prepared Statement of the Safety Net Coalition
    The Safety Net Coalition includes organizations which represent 
some of the largest providers of care to the uninsured across the 
nation. The Coalition urges your support for the $25 million safety net 
initiative included in the Administration's fiscal year 2000 budget 
request for the Department of Health and Human Services. This funding 
would support grants to local communities to enhance collaboration and 
cooperation among safety net clinics and hospitals, helping to produce 
a more efficient and seamless health care system for the uninsured.
    Currently many very important federal programs provide direct 
support to providers of health care services for uninsured and 
underinsured populations. These programs play a vital role in their 
communities and need additional funding in their own right to serve the 
growing number of people who are seeking their care. While such funding 
will strengthen the foundation of care for uninsured and vulnerable 
people in many communities, safety net providers could be even more 
efficient and cost-effective if given the resources to work together 
and coordinate care for their patients. Currently, there is no federal 
support for communities wishing to integrate the programs and services 
they already provide into a cohesive system of care for uninsured 
patients. While safety net providers are committed to providing the 
best possible coordinated services, they face significant obstacles in 
doing so. Their patients typically have much greater and costlier 
medical and social needs than more affluent populations, sapping these 
providers of any disposable resources to devote to coordinating care 
among themselves. The safety net initiative would help fill service 
gaps, building upon existing programs by encouraging coordination and 
efficiency and thereby significantly stretching federal dollars 
invested in direct services.
    Moreover, the initiative would allow for significant innovation and 
experimentation at the local level, with local consortia of providers 
proposing the most effective use of the funding for their communities. 
By focusing on the most pressing service gaps in their communities and 
targeting true safety net providers--those who currently serve large 
numbers of low-income and uninsured patients--communities can guarantee 
that existing charity care is expanded, and not supplanted or replaced. 
Successful models already in existence could be replicated or adapted, 
or communities could design completely new approaches. In addition, 
communities could use the relatively modest federal investment to 
leverage even greater local public and private funding, eventually 
becoming self-sustaining.
    We believe that this initiative is a sound and prudent investment 
of admittedly limited federal funding that will reap benefits far 
exceeding its costs in terms of enhanced care and improved efficiency. 
The following members of the Safety Net Coalition urge you to support 
this funding: American Association of Medical Colleges; American 
Association of Physicians of Indian Origin; American College of Nurse-
Midwives; American Physical Therapy Association; Asian & Pacific 
Islander American Health Forum; Association of Maternal and Child 
Health Programs; Association of University Programs in Health 
Administration; California Association of Public Hospitals and Health 
Systems; Catholic Health Association of the United States; Latino 
Council on Alcohol and Tobacco; National Association of Children's 
Hospitals; National Association of Community Health Centers; National 
Association of Counties; National Association of Public Hospitals & 
Health Systems; National Coalition for the Homeless; National Family 
Planning & Reproductive Health Association; National Health Care for 
the Homeless Council; Service Employees International Union; The Alan 
Guttmacher Institute; The Association of Reproductive Health 
Professionals; and The National Native American AIDS Prevention Center.
                                 ______
                                 
 Prepared Statement of Phillip E. Stephens, National Bladder Foundation
    Honorable Chairman and Members of the Committee: Thank you for 
giving the National Bladder Foundation the opportunity to submit 
written testimony about the devastating effects of bladder diseases in 
this country. We request your help in funding research to cure them. 
Below please find the personal testimony of interstitial cystitis 
patient Phillip Stephens which was presented in person before the House 
Appropriations Sub-Committee of Labor, Health and Human Services on 
April 15, 1999.
    My name is Phillip Stephens. I have interstitial cystitis. For most 
of my working life I have been in real estate, developing shopping 
centers and other commercial properties around the Southeastern United 
States. I live and work in Atlanta, Georgia and am the Chairman and CEO 
of Stephens Property Group. In 1990 I was on my honeymoon in the South 
of France when I began to experience a burning, pinching sensation in 
the area of my groin. I was 43 years old and it was my first marriage. 
I had no idea what could be wrong with me and must tell you, I wondered 
if my former girlfriends were trying to get even or something.
    Like so many men with IC, my problem was incorrectly diagnosed as 
benign prostate enlargement or BPH and for two years I took the usual 
battery of medicines prescribed for this malady--nothing helped and I 
was in pain 24 hours a day. Finally, in 1992, I had the first of two 
surgical procedures to relieve prostate enlargement. These did nothing 
to help. I was then bounced around to several other urologists who all 
prescribed the same ineffectual medicines. Still nothing helped and I 
lived in excruciating pain, needing to urinate constantly.
    Because the classic symptoms of many bladder diseases are frequency 
of urination and the feeling of urgency i.e. the need to urinate, many, 
many, patients get misdiagnosed and like me are forced to go from 
doctor to doctor and even from medical specialty to medical specialty. 
In the past, women were routinely told that ``it was all in their 
heads'' and told to try to relieve the stress in their lives. In my 
case, once they had more or less ruled out that I did not have BPH--the 
most common reason men my age would experience my bladder symptoms--I 
was referred to a psychiatrist for ``stress management''. It turned out 
that the psychiatrist was Atlanta's leading authority on criminal 
deviate sexual behavior. You can only imagine the cast of characters I 
shared the waiting room with. But the doctor was perfectly prepared to 
take my money and recommended a treatment program of sexual therapy. 
Although I kept insisting that I needed relief for my horrible pain, my 
cries went unheard and only psychological assistance was offered. By 
then I was desperate and I found out that when a person is truly 
desperate, he will put up with almost anything.
    Finally, in June 1996--almost four years after I first began to 
experience the pain symptoms, I went back to my original urologist and 
underwent yet another surgery for benign prostate enlargement. When I 
woke up in the recovery room, the doctor told me I had interstitial 
cystitis and that there was no cure for the disease. Although this news 
was not happy, at least I finally had a name for my disease.
    Interstitial cystitis is an inflammation of the bladder wall and 
may affect up to 1 million people in the United States--most of its 
patients are women--approximately 10 percent are men. In my case, like 
in Terry-Jo Myers' the LPGA golfer with IC, the new oral medication 
Elmiron, has improved my symptoms and has allowed me to be here today 
to represent those too ill to leave their homes. Unfortunately the drug 
is not effective for the majority of patients, many of whom live in 
constant pain, often housebound. I am also lucky, unlike many patients, 
to be able to afford to have access to the many doctors I had to seek 
out before I got a correct diagnosis. You may know that while 
interstitial cystitis cannot kill you, a tragic number of its victims 
resort to suicide--the pain and sense of helplessness they feel leads 
to a diminution in their quality of life which becomes just too much 
for some people to bear.
    Bladder disease affects a part of the body which most of us are 
embarrassed to talk about. I can't tell you how hard this was for me to 
deal with. I had a wonderful time as a bachelor for twenty years and to 
finally marry the woman of my dreams only to be afflicted with this 
disease starting on my honeymoon reduced whatever male ego I did have 
by quite a wide margin. As a man with IC, Senator Dole's ads on 
National TV for Viagra have been an inspiration to me and I know it has 
been for many others as well.
    It is estimated that over 35 million people suffer with bladder 
disease in the United States--over 1 in 10. Bladder cancer is the 4th 
leading cause of new cancer in men with--40,000 new cases this year. 
The link between smoking and bladder cancer has been established and 
this needs to be much more widely publicized. The number of doctors 
visits for urinary tract infections, almost 10 million, is second only 
to respiratory infections. Over 1.5 million people are hospitalized for 
UTI's each year and for spinal chord injury patients such infections 
may be fatal. But the largest segment of the bladder disease population 
has incontinence. Half of all women experience incontinence at some 
point in their lives and \1/3\ develop a regular problem. It is a major 
factor in nursing home admissions. Like IC, there are huge social and 
psychological consequences with incontinence. 50-70 percent of women 
with urinary incontinence will fail to seek medical help because of 
embarrassment and shame. They rely on absorbent products when a variety 
of treatments are available. Incontinence affects about 25 million 
adults and the cost of its care is estimated at $16 billion annually. 
Finally, childhood bladder disease affects a huge number of children. 
5-7 million kids suffer from enuresis or bedwetting and pediatric 
reflux affects 10 percent of all babies. Reflux is characterized by the 
reversal of urine flow and this can result in severe infection and 
kidney destruction. Studies indicate that the incidence and prevalence 
of bladder disease promises to increase dramatically in the next 
fifteen years.
    We need your help in finding causes and cures for bladder disease--
diseases that affect over 13 percent of Americans young and old. 
Statistics suggest that bladder disease research is profoundly under-
represented in NIH research funding. Only 41 cents is spend at the NIH 
on bladder disease per afflicted patient compared to other diseases 
such as lupus where $35 is spent, heart disease where $74 is spent and 
Alzheimer's where $81 is spent per afflicted patient.
    The National Bladder Foundation and all bladder disease patients 
are so grateful to all Members of this Subcommittee and in particular, 
to Chairman Spector, for his ongoing and support of IC research and 
other urological diseases. We respectfully urge you increase the 
funding for all bladder diseases including interstitial cystitis at the 
NIH and ask:
    1. That additional funds be provided to the Urology Program of the 
NIDDK in fiscal year 2000 to substantially enhance its research effort 
on bladder disease through all available mechanisms.
    2. That the NIDDK issue a series of RFA's specifically for basic 
bladder research, intersitial cystitis and incontinence in fiscal year 
2000 and designate funds for that purpose;
    3. That the NIDDK establish bladder research centers to develop 
therapies for the 35 million Americans suffering with bladder disease.
    Please help us end the suffering of IC and all bladder disease. 
Thank you so much for supporting research into bladder disease.
                                 ______
                                 
  Prepared Statement of W. Ron Allen, President, National Congress of 
                            American Indians
                            i. introduction
    Chairman Specter, Vice-Chairman Harkin and distinguished members of 
the Appropriations Subcommittee on Labor, HHS, Education and Related 
Agencies. Thank you for the opportunity to present this statement 
regarding the President's Budget Request for fiscal year (FY) 2000 
Indian programs and services specifically in the Departments of Labor, 
HHS, and Education. My name is W. Ron Allen. I am President of the 
National Congress of American Indians (NCAI) and Chairman of the 
Jamestown S'Klallam Tribe located in Washington State.
    NCAI views the fiscal year 2000 federal budget process as an 
opportunity to begin to set a better course for federal Indian 
policymaking in the next century. Tribal governments have found 
themselves in an increasingly defensive posture in the development of 
federal Indian policy over the last four years, and budget cuts and 
budget riders have been the point of attack on tribal self-
determination.
    Tribal leaders have set as an important goal that the tribal budget 
must become a higher priority within the appropriations process. The 
federal government has treaty and trust obligations to support Indian 
tribes that it is simply not meeting. Also, tribal citizens pay federal 
taxes but receive little support from federal funds that go to states. 
Programs serving the American Indian and Alaska Native population have 
rarely received the federal funding required to fulfill even the most 
basic needs and funding for Indian programs has lagged far behind the 
funding of non-Indian programs. 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 558 federally-recognized Indian tribes, a 
great majority of their populations are characterized by the most 
severe unemployment, poverty rates, ill-health, poor nutrition and sub-
standard housing in the U.S. In an era of federal budget surpluses, 
there are no excuses for failing to meet the federal obligation to 
remedy the human tragedy behind the statistics.
    The solution for the poor conditions in Indian Country must be a 
reinvigorated approach to economic development. The federal budget for 
fiscal year 2000 can do much to build the necessary infrastructure of 
roads, schools, housing, child and elder care, hospitals, clinics, 
technology, law enforcement, courts and other critical elements of any 
functioning economy in the United States. The United States has an 
obligation to help rebuild the shattered infrastructures of Indian 
Nations and create the opportunity for economic prosperity that will 
benefit not only Indian people, but the entire American economy. It 
should also be noted that the conversion of welfare entitlement funds 
into state discretionary funding has added to the urgency felt 
throughout Indian Country to boost economic development.
    Also, the use of appropriations riders to ambush tribal self-
government has become more and more frequent. Tribal self-government is 
recognized in the United States Constitution and hundreds of treaties, 
federal statutes and Supreme Court cases and is deserving of serious 
consideration by the Congress. At the very least, if the federal 
government is going to contemplate legislation affecting tribal self-
government, the legislation should be considered in the authorizing 
Committees, given opportunity for consultation with the affected 
tribes, and taken up as stand-alone legislation where Members of 
Congress can know and understand what they are voting on. We have been 
made aware of the introduction of Senate Resolution 8 by Senators Ted 
Stevens and Robert Byrd. S. Res. 8 would amend the Senate rules to 
reinstate a former rule which prohibited legislative riders on 
appropriations bills and which would require a three-fifths vote to 
waive a point of order under the rule. NCAI would surge the members of 
this Sub-committee to support S. Res. 8.
    As Congress begins to shape the fiscal year 2000 budget, the NCAI 
urges an increased investment in Indian programs and tribal government 
infrastructure. We believe that the President's fiscal year 2000 budget 
request has taken a very positive step in that direction. The following 
testimony is an overview of the recently released President's fiscal 
year 2000 budget request that provides NCAI's viewpoint on sections of 
the budget that are most critical to tribal governments.
                       ii. background information
    Mr. Chairman, I would like to begin my testimony by providing a 
general context regarding federal funding for Indian programs. 
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. Of the 558 federally-recognized Indian tribes, 
a great majority of our populations are characterized by severe 
unemployment, high poverty rates, ill-health, poor nutrition and sub-
standard housing. 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. When 
comparing trends between fiscal year 1975-1999 for the total BIA budget 
and the federal non-defense budget as a whole, federal spending as a 
whole increased at a rate of $41 billion a year, with an average level 
of $669.8 billion, while when corrected for inflation, the BIA budget 
actually declined by $10 million a year, on an average spending level 
of $1.7 billion. Throughout the entire fiscal year 1975-fiscal year 
1999 period, per capita spending on the U.S. population as a whole 
consistently increased, whereas per capita spending on Indians through 
major Indian-related programs began to fall after fiscal year 1979.
    Furthermore, in fiscal year 1996, federal funding for Indian 
programs fell short 13 percent or $581 million from the President's 
budget request for that fiscal year. This was mostly seen in dramatic 
cuts in funding for the BIA ($322 million less), Department of Housing 
and Urban Development (HUD) New Indian Housing ($134 million less), and 
the Indian Health Service (IHS) ($80 million less). In fiscal year 
1997, funding for these programs fell short 4.1 percent or $175 million 
below the President's request. And in fiscal year 1998, there was a 1.2 
percent or $52 million shortfall from what the President requested. In 
fiscal year 1999, this unfortunate trend continued with a $100 million 
shortfall.\1\ Mr. Chairman, in a year when the U.S. economy is booming 
and the federal government is expecting over seventy billion dollars in 
surplus funds, the federal government should not be cutting funds to 
American Indians, this nation's poorest people.
---------------------------------------------------------------------------
    \1\ See generally ``Indian-Related Federal Spending Trends, Fiscal 
Year 1975-1999'', Congressional Research Service (CRS), February 1998.
---------------------------------------------------------------------------
    As you are well aware, in recent years tribes have faced 
extraordinary challenges throughout the appropriations process. 
Unprecedented reductions in federal Indian program funding 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 and reform the welfare system, we maintain 
that such laudable initiatives do 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 have created 
a state of emergency for many tribal governments. NCAI is encouraged, 
however, with the Administration's fiscal year 2000 commitment to begin 
addressing some areas of priority concern to Indian Country.
    As Congress begins the appropriations process for fiscal year 2000, 
NCAI aggressively seeks support from this Subcommittee in reversing the 
decline in funding for federal Indian programs that we have experienced 
since fiscal year 1996. In general, we believe that the President's 
fiscal year 2000 budget request has taken a very positive step in this 
direction. We are concerned, however, that even the Administration's 
request for certain essential tribal programs and services remain 
seriously inadequate. Accordingly, tribal budgets are insufficient to 
meet the most basic needs of tribal populations.
    The following testimony is an overview of the recently released 
President's fiscal year 2000 budget request that provides NCAI's 
viewpoint on sections of the budget under the Department of Agriculture 
that are most critical to tribal governments. As more specific 
information is released from the Administration regarding the details 
of the budget request, NCAI will provide further information regarding 
the priorities of the tribal government members of NCAI.
A. Department of Labor
    With the enactment of the Workforce Investment Act (WIA), the 
enduring Job Training Partnership Act (JTPA) has been repealed; most of 
its various job training programs were redesigned and incorporated into 
the new WIA programs. WIA includes tribally specific programs with 
guaranteed funding levels for such programs. However, the President's 
fiscal year 2000 budget request for tribal WIA programs is $1.2 million 
less than the Indian program is guaranteed in the authorization 
statute. NCAI urges Congress to fully restore the guaranteed authorized 
funding level for Indian WIA programs which urgently needs funding for 
job training and related support services.
    NCAI also requests the Congress to reauthorize the Welfare-to-Work 
(W-t-W) program for tribes an additional two years and to increase the 
funding level for this program by an additional $30 million. Well over 
65 WtW plans for tribal programs have been submitted to the Division of 
Indian and Native American Programs, with slightly over 100 tribes, 
intertribal consortia and Alaska Native villages covered under these 
plans. Extension of this program is critical, along with a much-needed 
funding increase, in order to provide employment services for long-term 
welfare recipients into the next millennium.
    The Senior Community Service Employment Program (SCSEP), authorized 
in Title V of the Older Americans Act (Pub. L. 89-73, as amended), 
provides important services for Indian elders. The SCSEP funds ten 
national sponsors, including the National Indian Council on Aging 
(NICOA), to train low income elders through community service agencies. 
NCAI requests an appropriation of $484 million, a 10 percent increase, 
for Title V programs in fiscal year 2000, and maintenance of the 
provision for a guaranteed minimum allocated to the program serving 
Indian elders. The Title V program is especially important for Indian 
Country due to the significant need for many Indian elders to acquire 
job skills and supplement their very limited incomes, the high rates of 
unemployment found in Indian Country, and the great need for the 
community services these trainees provide.
B. Department of Health and Human Services
            1. Indian Health Service
a. Fiscal year 2000 funding
    After last year's unacceptable $2.1 billion budget request, an 1.9 
percent increase, for the Indian Health Service (IHS), a request that 
was eventually increased to $2.7 billion by Congress to better support 
tribal health care needs, the President's fiscal year 2000 budget 
request of $2.8 billion is a step in the right direction. However, this 
total includes an estimated $39 million in Medicare, Medicaid and 
Private Health Insurance collections, making the adjusted 
Administration's request somewhere in the area of only $2.412 billion. 
This adjusted total falls short of the requested minimum of $2.62 
billion tribal governments advised the Administration and Congress to 
enact, minus any estimated health insurance collections, per NCAI 
Resolution #MRB-98-097 (attached).
    A brief analysis of the President's budget request quickly 
identifies additional funding needs. The IHS reports that currently 
enacted funding levels only serve 36 percent of the projected need for 
Indian health care. Moreover, IHS statistics show a current 
inflationary rate that will require an additional $30 million to 
compensate for current inflation alone. The $400 million in increases 
to the fiscal year 2000 IHS budget listed below will help to 
significantly address outstanding funding needs in areas such as 
Contract Support, medical inflation rates, and program funding 
shortfalls. NCAI urges Congress to increase the President's fiscal year 
2000 IHS budget in the following categories:

                        [In millions of dollars]

Hospitals and Clinics.............................................    76
Contract Health Services..........................................    33
Contract Health Representatives...................................     5
Contract Support Costs............................................   100
Other Health Service Programs (including Urban, Dental, Mental 
    Health, Alcohol/Substance Abuse Prevention, etc.).............   100
Facilities (including Construction, Sanitation andMaintenance & 
    Improvement)..................................................   100

    What these requested funding increases mean, in real terms, is that 
thousands of American Indian and Alaska Native people will have access 
to better and more increased health care services including hospital 
admissions, outpatient visits, dental services, mental health and 
social health services, public health nursing home visits and community 
health representative visits.
b. Contract Support Costs
    The President's budget request includes a $35 million increase in 
contract support associated with IHS programs under tribal operation. 
Based on current levels of contracting, such an increase would 
certainly boost the levels of contract support payments to many tribes. 
But even if inflation is disregarded, it would still leave scores of 
the least funded tribes underfunded in the range of between 10 percent 
and 20 percent, depending upon which of several possible methodologies 
is used to distribute such an increase. (Possible methodologies include 
helping all underfunded tribes cover varying shares of their shortfall, 
as well as methodologies directing all such new funds only to the most 
severely underfunded tribes.)
    At this time, it is unknown whether Congress will lift the section 
328 moratorium, in whole or in part. For its part, IHS is now actively 
exploring with Indian Country possible alternatives, including 
approaches which view fiscal year 2000 as a second ``transition'' or 
``correction'' year in which the vast majority of any effort continues 
to go toward addressing the ongoing contract support crisis faced by 
existing tribal programs. These and other reform issues are being 
actively explored as part of IHS's initiative to revise the agency's 
contract support cost circular for fiscal year 2000 by April 1999.
    As with the BIA shortfall, the NCAI Workgroup on Contract Support 
Costs has strongly urged Congress to fully close the gap in the current 
IHS shortfall for fiscal year 2000, estimated by IHS to be $93.4 
million plus unfunded pre-1999 inflation. As part of this effort 
Congress should restore the Indian Self-Determination Fund to at least 
$12.5 million in fiscal year 2000, and IHS should immediately begin 
canvassing Indian Country to secure an assessment of new contracting 
requirements needed for fiscal year 2000 and fiscal year 2001.
c. Contract Health Services
    Contract health is an important component of Indian health 
programs, particularly in areas without IHS hospitals, where there is 
rapid business development, and where there are smaller tribes that 
tend to be contract health services dependent due to a lack of clinical 
services. To highlight the impacts of continued contract health funding 
shortages, the Great Lakes Intertribal Council did a Wisconsin tribes' 
study that identified sizable cost shifts to tribes, averaging around 
$400,000 per tribe, per year for contract health services. These shifts 
equate to an approximate 70 percent shortage of federal funding for 
tribal contract health programs. The Wisconsin study also identified 
$2.6 million in tribal contributions per year to cover these cost 
shifts, an amount equal to the funding levels Wisconsin tribes received 
from the IHS. This snapshot of contract health funding shortages in 
Wisconsin is a good example of the contract health funding shortages 
experienced by tribes in most other areas of Indian Country.
    Vice Chairman Inouye eluded to the concerns over cost shifting 
contract health costs to tribes in his statement on Indian health care 
issues before this committee on May 21, 1998. Moreover, NCAI Resolution 
#GRB-98-039 (attached) requests that Congress end the impacts of cost 
shifts to tribes by increasing funding for contract health by 70 
percent, the amount identified by the fiscal year 2000 Indian Health 
Service Budget Tribal/IHS Task Force, and encourages further study of 
the issue of cost shifting, particularly for contract health services, 
by Congress and the IHS.
d. Urban Indian Health
    With nearly half of the nation's Indian population living off-
reservation in the urban areas of this country, the funding needs of 
urban health clinics continue to grow. The President's $3 million 
increase in Urban Health services is a welcomed improvement. Tribal 
governments continue to share in the duties and responsibilities of 
providing health care for urban Indian individuals in conjunction with 
the federal government. For these reasons it is critical that our 
clinical services, whether they be provided by the IHS, the tribe, or 
the urban Indian clinic, continue to receive increased funding to keep 
pace with the ever-increasing needs of their service area populations.
e. Indian Health Care Improvement Fund/Comprehensive Health Emergency 
        Fund
    Under the President's $12 million budget proposal for the Indian 
Health Care Improvement Fund, $4.9 million will be lost in Special Pay 
Funding (physician compensation). NCAI requests an additional $13 
million be allocated to this important program, allowing IHS hospitals 
to compete with the private sector in attracting top quality 
physicians. In addition, NCAI Resolution #MRB-98-116 (attached), calls 
upon Congress to increase the regular IHS scholarship appropriation 
from $9.6 million to $20.9 million, providing the necessary funding to 
accommodate an additional 432 health professional students in fiscal 
year 2000. NCAI also requests an additional $8 million be added to the 
President's $12 million request for the Comprehensive Health Emergency 
Fund, bringing that fund's total up to the level requested by tribes to 
meet the projected need in Indian Country.
f. IHS Medicaid Per Capita Expenditures
    As reported to Congress last year, a growing disparity exists 
between Indian and non-Indian citizens in per capita expenditures for 
Medicaid patients. Current IHS Medicaid statistics reflect a $3,300 per 
capita expense for non-Indians, compared with a $1,400 per capita 
expenditure for Indian patients, a difference of nearly $2000 less 
expended on Indian Medicaid patients. Per NCAI Resolution #MRB-98-
111(attached), Congress is urged to allocate funding levels necessary 
to close the enormous disparity in the per capita amount of health care 
costs associated with IHS hospital facilities throughout the nation, a 
move that will help balance out the inequities between Indian and non-
Indian per capita Medicaid expenditures.
g. IHS Facilities Funding
    Tribes have reported to NCAI that recent fiscal year decreases in 
overall federal funding for IHS Facilities maintenance and construction 
have left facilities struggling to keep pace with the needs of their 
service areas. Old facilities continue to experience the need for major 
improvements, and some service areas have grown to the point of 
requiring the construction of new facilities. NCAI has two resolutions 
that address IHS Facilities funding needs. The first, NCAI Resolution 
#MRB-98-099 (attached), calls upon Congress to funding for the 
construction, maintenance and improvements of health care facilities. 
The second, NCAI Resolution #MRB-98-015 (attached), seeks an additional 
$1.5 million in operating funds for the Lawton Hospital in Oklahoma. 
This funding is necessary to better staff and operate the only 
accessible hospital for several tribes in western Oklahoma.
    Most IHS facilities throughout Indian Country require specific, 
quantified levels of funding to operate effectively and efficiently for 
the patients they serve. Many of these facilities, like Lawton, are the 
only upper-level health care facility in close proximity to remote 
tribal communities. Congress must continue to address the growth of 
tribal health service populations and the health care facility funding 
needs associated with that growth. To abandon this commitment will 
create turmoil and confusion within the regions that tribal, IHS and 
urban health care facilities serve. NCAI urges Congress to support the 
need for increased health care facilities in Indian Country by 
increasing the President's fiscal year 2000 budget request for IHS 
Facilities funding by $100 million.
    Sanitation facility needs continue to grow in the more remote parts 
of Indian Country, and especially in Alaska Native villages. With over 
$1.687 billion in sanitation deficiencies identified by the IHS as of 
fiscal year 1998, the President's requested increase of $3 million 
falls short of any realistic commitment to improve tribal sanitation 
services. NCAI urges Congress to appropriate an additional $10 million 
in IHS sanitation facilities funding, with $5 million earmarked for the 
Alaska honey-pot eradication project.
h. Y2K Initiative
    The integrity of IHS/Tribal/Urban Indian (ITU) health care 
information systems are compromised by the Year 2000 (Y2K) computer 
problem. Congress approved funding for fiscal year 1999 to begin 
addressing the magnitude of problems surrounding Y2K. NCAI Resolution 
#MRB-98-038 (attached) urges Congress to continue Y2K funding in fiscal 
year 2000, allocate a portion of those funds to the Indian Health 
Service to adequately address the number and diversity of ITU health 
information systems, and direct the IHS area offices to conduct full 
consultation with ITU's over the distribution of such funding.
i. IHS 638 Moratorium
    In fiscal year 1998, a one-year moratorium on Pub. L. 93-638 
contracting and compacting of IHS programs was enacted as part of the 
fiscal year 1998 IHS appropriations (Section 326). This moratorium was 
extended through fiscal year 1999 as part of last year's IHS 
appropriations law (Section 341). NCAI went on record both years 
opposing such moratoriums. NCAI Resolution #MRB-98-046 (attached) also 
opposes Section 341 of the fiscal year 1999 IHS Appropriations law as a 
direct assault on tribal sovereignty by eliminating the rights of 
Alaska tribal governments to contract or compact. This resolution also 
considers the moratorium an impediment to Congress' intent of expanding 
self-determination in Indian Country, and contrary to the government-
to-government relationship between tribes and the federal government. 
NCAI urges Congress to repeal the IHS ``638'' moratorium and oppose any 
legislative initiatives that would weaken any tribal authority to 
contract or compact.
j. Tobacco Settlement
    Tobacco Settlement legislation was a major legislative initiative 
in the 105th Congress, and one that tribal governments took notice of 
early on. IHS statistics show that Indian people suffer from tobacco 
related illnesses in far greater numbers, per capita, than any other 
population sector in the United States. Because of this, NCAI's member 
tribes adopted NCAI Resolution #GRB-98-011 (attached) that supports 
provisions which would allocate a fair share of any new taxes or funds 
resulting from a tobacco settlement to the IHS budget. This resolution 
also calls upon the IHS develop a tribal consultation process for the 
distribution of any funds resulting from increase tobacco taxes or 
tobacco settlement monies, and, should funding be directed to state 
governments only, that states be required to fund tribes at an 
equitable level for tobacco related illnesses.
k. IHS Self-Governance Program
    NCAI lauds the work of the U.S. House of Representatives in last 
year's passage of H.R. 1833, which would establish permanent 
authorization of the IHS self-governance program. Such legislation was 
developed by tribal self-governance and non-self-governance leaders, 
the IHS and the DHHS policy staff. NCAI Resolution #GRB-98-014 
(attached) formally calls upon the Congress to consider and approve the 
passage of permanent authorization for the IHS self-governance program 
as quickly as possible.
l. Elevation of the IHS Director
    NCAI Resolution #GRB-98-010 (attached) also urges Congress to 
elevate the IHS Director position to that of Assistant Secretary within 
the DHHS. Currently, the Director of the IHS, the top administrative 
official charged with carrying out the federal responsibility for 
Indian health, does not report directly to the DHHS Secretary. NCAI, 
along with tribal leaders and tribal health care professionals feel 
that in order for the IHS to operate efficiently and effectively and 
have its needs best served by the DHHS, that the head of the IHS must 
be elevated to the level of Assistant Secretary. NCAI urges Congress to 
pass such legislation early on in the 106th Congress.
m. Tribal Participation in IHS fiscal year Budget Development
    Along with the $2.62 billion IHS fiscal year 2000 funding level 
request mentioned above, NCAI Resolution #MRB-98-097 (attached) charges 
the NCAI to urge Congress to direct the IHS to work collectively with 
NCAI, tribal governments, the National Indian Health Board, the IHS 
Tribal Self-Governance Advisory Board, the National Council on Urban 
Indian Health and regional Indian health boards to develop an IHS 
budget that adequately addresses the significant needs in health care 
throughout Indian Country. Quality health care continues to be one of 
Indian Country's top priorities. It is common knowledge that the IHS 
has been historically and grossly under-funded, leading to inadequate 
medical services, facilities and treatment programs within many 
reservations and urban Indian communities. Because of this, Indian 
people continue to suffer the highest levels of chronic diseases, 
infant mortality, teen suicide and substance abuse than any other 
population sector in the nation.
    Over 1.5 million American Indians and Alaska Natives receive health 
care services from the IHS. In many remote areas of Indian Country, IHS 
services are the only health care services available. As unacceptable 
as Indian health care statistics were during times of enormous federal 
deficit, such statistics are absolutely unconscionable in times when 
the federal government enjoys a sizable budgetary surplus. Congress is 
urged substantially increase the IHS budget as a way of improving the 
status of Indian health and meeting the rise in projected health care 
needs throughout Indian Country.
            2. Administration for Native Americans
a. ANA Program Overview
    ANA administers its basic grant program in four distinct 
categories, including: (1) the Social and Economic Development 
Strategies program (SEDS); (2) an Alaska specific SEDS program 
primarily geared to governance; (3) an environmental regulatory 
enhancement program focused on tribal capacity building; and, (4) the 
native language program to preserve and revitalize native languages. 
The SEDS program includes a wide range of governance projects allowing 
for tribal constitution revisions and codes/ordinance development, 
social projects that are based on maintaining and fostering cultural 
traditions, and economic development projects covering a wide range of 
areas.
    ANA economic development projects include not only the development 
of new enterprises but also the expansion of existing successful 
businesses. The majority of economic development projects are planning 
grants for architectural and engineering costs or grants that provide 
for economic development infrastructure (i.e. codes/ordinances 
development and creation of enterprise boards).
b. New ANA Initiatives
    In fiscal year 1999, ANA began requiring a 401-(k) retirement plan 
for approved applicants funded by ANA. As a part of the fringe benefits 
package provided by the tribe to employees under the ANA project, ANA 
will fund at least five percent of the employer's share. This 
initiative will assist in creating a positive and viable retirement 
system in Indian Country and has received support from a sampling of 
tribes.
    ANA has also leveraged an additional $1 million in ANA funding 
along with $1 million from the state of Hawaii for a total of $2 
million awarded in grants under the Native Hawaiian SEDS specific 
program. This program will assist Native Hawaiian communities in 
meeting their unique social and economic development goals.
c. Impediments to ANA Program Grant Expansion
    ANA has been at level funding at 35 million dollars since 1995. In 
real terms this means that ANA has lost 20 percent of program dollars 
due to the inability of the budget to keep pace with inflation. Under 
current budgetary conditions, the ANA can fund only about 25 percent of 
the grant applications submitted for each program. ANA could, however, 
fund many more grants if funding were available. In fiscal year 1998, 
for example, ANA received 549 applications but was only able to award 
188 new starts.
    Since 1994, ANA has also lost 50 percent of its staffing. Of this 
total, one third has taken place in the current fiscal year. ANA has 
gone from 33.5 FTE to 16 FTE since 1994. In keeping with Native 
American preference in hiring, ANA planned on hiring Native Americans 
in those vacancies that were lost. However, budgetary reductions have 
stymied that goal. Staff cuts have also negatively impacted the ANA 
workload both in terms of customer service and necessary monitoring and 
analytical work on grant awards. FTE reductions have also impacted the 
mission of the Intra-Departmental Council on Native American Affairs, 
chaired by the ANA Commissioner.
    Through its Native American program assistance, the ANA has moved 
many tribal and Native programs from dependency on federal services, or 
operating federally-mandated programs, to developing and implementing 
their own discrete projects. ANA continues to serve a large and diverse 
base of Native American communities and organizations, many of which 
have little in the way of resources and lack sustainable economic 
development opportunities. NCAI urges Congress to increase the 
President's fiscal year 2000 budget request of $35 million for this 
agency to allow for increased grant awards and additional ANA staff. In 
doing so, Congress will show its support for the tribal self-
sufficiency goals promoted by the ANA.
            3. Administration for Children and Families
    Within the Administration for Children and Families lies a host of 
Agencies, Bureaus and Divisions that regulate social service programs 
which are critically needed in Indian Country. Unfortunately, access to 
these programs and services is extremely limited, with tribal resources 
and consultation measuring only a fraction of what is provided to 
states and other non-tribal government entities. Agencies established 
for the purpose of serving tribal governments suffer the same dilemmas 
as tribes--i.e., the Division of Tribal Services (DTS), established 
under the DHHS/ACF to fulfill the requirements of the Personal 
Responsibility and Work Opportunity Reconciliation Act of 1996 (PRWORA, 
Pub. L. 104-193).
    The President's fiscal year 2000 budget request again fails to 
provide the Division of Tribal Services (DTS) its own discretionary 
program authorization and budgetary line-item. Because of this, the DTS 
continues to be forced to borrow scarce resources from other agency 
programs in order to provide services to tribal governments in the 
areas of Temporary Services for Needy Families (TANF) and Native 
Employment Works (NEW) programs. The ACF has tried to provide necessary 
funding to carry-out these duties, but it has become more and more 
obvious that without line-item funding authorization for the DTS, the 
ever-increasing needs of Indian tribes surrounding these social support 
programs will not be met.
    NCAI again urges Congress to immediately authorize for fiscal year 
2000, an initial $10 million budgetary line-item for the DTS. As part 
of this authorization, NCAI again asks Congress to expand the DTS 
responsibilities beyond just TANF and NEW, to include social support 
related tribal services under the ACF including child care, child 
support and enforcement, and child protection services. Creating a more 
streamlined approach to serving tribal government social support 
program needs will benefit all parties involved in providing, obtaining 
and accounting for these services. NCAI also calls upon Congress to 
hold oversight hearing on welfare reform's impacts on Indian country. 
In this way, tribal leaders can report directly to Congress on their 
needs, goals and objectives surrounding the conversion of tribal cash 
assistance populations into tribal workforce populations.
    Tribal governments have passed a series of NCAI resolutions 
pertaining to the lack of direct programs, services, and funding 
authority within the ACF. Most are tribal TANF specific, but others 
cover children's issues, disabilities, etc. The following is a brief 
description of these resolutions.
    When welfare reform was enacted, provisions in the law called for 
state and tribal TANF grant funding levels to be based on fiscal year 
1994 AFDC enrollment figures of those state and tribal populations. It 
was quickly apparent that accurate data from state AFDC programs did 
not identify Indian AFDC recipients from non-Indian recipients. 
Additionally, many tribes who chose to operate tribal TANF programs 
soon realized that their TANF caseloads were far exceeding the 
estimated fiscal year 1994 caseload numbers. To formally address this 
issue, NCAI Resolution GRB-98-021, calls upon Congress to amend the 
PRWORA to allow tribes the option of basing their TANF grant funding 
level formula either upon: (1) fiscal year 1994 AFDC enrollment levels, 
(2) the level of actual enrollments based on a tribe's experience in 
the first year of operating its TANF program, or (3) the current level 
of actual enrollment. In this way, tribes will be assured that they 
will receive appropriate funding levels to effectively administer their 
TANF programs.
    Many tribal communities are located in remote areas, with little in 
the way of public transportation services, creating very limited access 
to welfare-related support services and programs not directly 
administered by a TANF agent. Such programs may include Medicaid 
services, the Food Stamp program and others. To help consolidate these 
program and service deliveries, NCAI Resolution GRB-98-046 calls upon 
Congress to create a one-stop shop option for tribal TANF offices 
wishing to provide other support services not directly related to TANF 
for their eligible members and service area populations. This one-stop 
shop concept would allow Indian people to receive such services as Food 
Stamps from their TANF office, along with having their eligibility 
determined for programs such as Medicaid.
    Consultation with tribal governments over federal Indian program 
regulations have always been minimal outside of the traditional BIA/IHS 
regulatory arena. Such lack of consultation has been the experience of 
tribes with the promulgation of tribal TANF regulations. This runs 
counter to the President's Executive Order No. 13084, which calls for 
increased direct consultation between tribal governments and the 
federal government over issues such as regulatory development. Because 
of this lack of consultation with tribes over the tribal TANF Notice of 
Proposed Rule Making (NPRM), NCAI Resolution MRB-98-057 calls upon the 
Administration to suspend the promulgation process until tribes have 
been consulted with in a manner mutually agreed upon by tribes and the 
NCAI. NCAI Resolution MRB-98-059, also highlights specific changes to 
the current tribal TANF NPRM requested by tribes. We ask Congress to 
support these tribal positions by directing the Administration to seek 
further consultation with tribes over any further tribal TANF 
regulatory process as well as any other federal regulatory processes 
that directly impacts tribal programs and services.
    In regard to the development of tribal Child Support and 
Enforcement programs, the PRWORA authorizes tribal government to apply 
for direct funding over an entire tribally-operated Office of Child 
Support and Enforcement (OCSE) program, or direct funding for OCSE 
program functions carried out by the tribe as part of a cooperative 
agreement with the state over child support enforcement activities. 
However, the OCSE has stated to tribes that they would not authorize 
any direct tribal OCSE funding until after regulations over such tribal 
program functions are promulgated. NCAI Resolution MRB-98-067 requests 
the OCSE provide funding prior to a final rule being promulgated so 
that tribes can immediately begin building the infrastructure and 
technological base to operate such a complex program. NCAI urges 
Congress to direct the OCSE to adhere to the request of tribal 
governments under this resolution.
    Our disabled Native American population continues to suffer from a 
lack of attention by the Congress and the Administration. Disability 
cases in Indian country far exceed those in other population sectors on 
a per capita basis, with many being disabled veterans. NCAI wishes to 
highlight three resolutions that speak to the needs of our disabled 
people.
    First, NCAI Resolution GRB-98-042, calls upon Congress to work with 
the Administration, and specifically, the National Institute on 
Disability Rehabilitative Research (NIDRR), the U.S. Department of 
Justice (DOJ), the Rehabilitation Services Administration (RSA) and the 
Administration on Children and Families (ACF) to establish and fund an 
American Indian Americans with Disabilities Act (ADA) Technical 
Assistance Center to serve American Indians and Alaska Natives, 
respectful of tribal sovereignty and cultural diversity.
    Second, NCAI Resolution GRB-980-043, urges the NIDRR to meet tribal 
needs for assistance with persons with disabilities by funding no less 
than three Research and Training Centers (RTC's) to work with tribal 
people and their governments, both on and off the reservation, in 
health, rehabilitation, and employment issues. NCAI urges Congress to 
direct the NIDRR to comply with the requests identified in this 
resolution.
    Finally, NCAI Resolution GRB-98-050, calls for the support of a 
National Wheelchair Recycling Project, similar to a model project in 
Wisconsin. This project takes used wheelchairs destined for scrap and 
refurbishes them for additional use. In addition, this project provides 
a collective benefit for environmental protection, community services, 
assistance for disabled persons, and a venue for volunteer 
accomplishments. NCAI urges the Congress to support such noble concepts 
which provide mobility with dignity to temporary or permanently 
disabled Native Americans throughout Indian Country. Many tribal 
communities continue to suffer from a lack of adequate infrastructure, 
economic development and other community improvement factors necessary 
to properly administer their own welfare reform programs. In order to 
achieve these community development goals, tribes must have adequate 
funding for economic development, technical assistance, data 
collection, construction, job training, children and family support 
services, housing, transportation, alcohol and substance abuse programs 
and tribal enforcement plans. If federal support is not offered to help 
tribes create jobs, sustainable economies and community well being, 
welfare reform may lead to forced relocation, or even starvation, for 
many Native American families.
            4. Administration on Aging
    Three provisions under the purview of the Administration on Aging, 
authorized in the Older Americans Act (Pub. L. 89-73, as amended), are 
of special importance to Native American elders. The first is aging 
grants for Native Americans authorized in Title VI of the Older 
Americans Act. The purpose of this program is to promote the delivery 
of supportive services, including nutrition services, to older American 
Indians, Alaska Natives, and Native Hawaiians. NCAI requests that the 
full $30 million authorized for Title VI be appropriated in fiscal year 
2000. Funding of this program provides key ``front-line'' services for 
229 programs serving reservation elders, including congregate and home-
delivered meals, transportation, and a wide variety of other services.
    The second provision is Aging Research and Training, also 
authorized in Title IV. Activities supported under this program have 
helped organizations such as the National Indian Council On Aging 
(NICOA) gather knowledge about the problems and needs of Indian elders, 
and design and test innovative approaches to meet the needs of this 
rapidly-increasing population. Additionally, funds from this program 
have historically provided training funds for Title VI program 
directors. For fiscal year 2000, NCAI requests an appropriation of 
$630,000 with at least $130,000 earmarked for a continuing grant to 
NICOA to gather information on Indian elders and to quantify their 
needs. The remaining $500,000 should be directed to grants for training 
Title VI service providers to better serve Indian elders.
    The third provision is Ombudsman/elder abuse prevention authorized 
in Title VII: Allotments for Vulnerable Elder Rights Protection 
Activities, Subtitle B: Native American Organization Provisions. 
Subtitle B was intended to assist in prioritizing elder rights issues 
and carrying out elder rights protection activities in Indian Country. 
With deteriorating economic and social conditions in many Indian 
communities, elder abuse is on the rise. Prevention programs for tribes 
are desperately needed--yet no funds have ever been provided for 
Subtitle B, despite an authorization level of $5 million. State 
programs currently receive $4.5 million for ombudsman services and $4.7 
million for prevention of elder abuse programs. However, these programs 
seldom, if ever, reach Indian Country. Mr. Chairman, we request that 
the full $5 million be appropriated in fiscal year 2000 specifically 
for tribal programs as authorized in Subtitle B of Title VII.
    During the coming year, Congress is expected to take action on a 
number of policy issues that will greatly impact Indian elders. Three 
of the more critical issues to be debated include reauthorization of 
the Older Americans Act (OAA) and the Indian Health Care Improvement 
Act; as well as the Administration's proposal to establish a National 
Family Caregiving Support Program, which has been included in Senator 
Daschle's bill, S. 10, to reauthorize the OAA. NCAI takes the following 
positions on these three issues.
    First, the Older Americans Act was last reauthorized in 1992, with 
reauthorization long overdue. While appropriations for OAA programs can 
and do occur without reauthorization, programs serving Indian elders 
are at risk as the supply of discretionary funds dwindle. For this 
reason, reauthorization without major changes to existing targeting 
language is critical.
    Second, numerous provisions in the Indian Health Care Improvement 
Act will require significant modification to better serve Indian 
elders. When hearings are scheduled for this purpose, the NCAI would 
like to voice its suggestions for amendments.
    Third, the Administration's proposal for assistance to family 
caregivers directs a large majority of the resources directly to states 
through the OAA. Unfortunately, as proposed, it does not direct any 
portion of these funds to Indian Country through the existing OAA 
mechanism--the Title VI program--or directly to tribes. When these 
issues are heard, the NCAI would welcome the opportunity to suggest 
ways to ensure that Indian caregivers can also receive adequate 
support.
    Without exception, our tribal cultures teach us to honor and 
respect Indian elders so that our elders--the living expression of our 
heritage and highest values--can be teachers to us and to our children. 
We urge Congress to honor this mandate by providing adequate funding 
for those programs that impact Indian elders, to reauthorize the Older 
Americans and Indian Health Care Improvement Acts, and to ensure that 
Indian care givers are adequately recognized in any care giving 
assistance legislation.
            5. Health Care Financing Administration
    Indian Country has become increasingly aware of the impacts that 
major entitlement programs such as Medicaid, Medicare and the 
Children's Health Insurance Program (CHIP) have on their communities. 
Because of this, NCAI urges Congress to consider establishing direct 
tribal programs under the Health Care Financing Administration (HCFA), 
improve tribal access to existing HCFA programs, and mandate a 
significant increase in consultation between tribes and the HCFA over 
such program and service entitlements.
    As highlighted above in our discussion on the IHS budget, a growing 
disparity exists between Indian and non-Indian citizens in per capita 
expenditures for Medicaid patients. We believe similar funding 
disparities exist for Medicare and are starting to emerge for the new 
CHIP program. In spite of these recent trends, recent statistics from 
the California Rural Indian Health Board and the Oneida Tribe of 
Wisconsin show a very low enrollment of American Indian and Alaska 
Native children in the CHIP program. The Balanced Budget Act of 1997, 
which created the CHIP program, and current HCFA consultation on the 
implementation of CHIP require state child health plans to prescribe 
procedures for the delivery of health care services to Indian children. 
As stated in NCAI Resolution #MRB-98-093 (attached), we must find ways 
to appropriately address the underlying reasons for these funding 
disparities and ensure that Indian people who are eligible for these 
programs can benefit from them. Moreover, Congress must focus on 
creating equitable funding streams from these important third party 
resources to the IHS/Tribal/Urban Indian (ITU's) health care entities 
that serve CHIP eligible Indian children.
    There are a number of reasons that may help explain why these 
disparities exist and provide clues to how we might begin to overcome 
them. Many Indian people who would meet the eligibility criteria for 
these programs don't complete the application process, despite efforts 
by ITU's to encourage them to do so. For many, lack of transportation 
to distant eligibility offices, confusion about complex applications 
and documentation requirements, and inhospitable or culturally 
insensitive treatment by eligibility workers are barriers. These 
barriers could be overcome by providing funds for transportation and 
assistance with application and documentation processes and/or hiring 
and training more tribal members to serve as out-stationed eligibility 
workers in their own communities. These approaches would increase 
outreach, provide explanations of program requirements and benefits to 
tribal members, and assist applicants in navigating the eligibility 
determination process.
    Certain financial requirements present more difficult barriers for 
Indian people in accessing these programs. Medicare requires payment of 
monthly premiums and certain deductibles and co-payments. While 
standard Medicaid programs do not require premiums, a number of 
Statewide Medicaid demonstration programs do impose premiums for some 
people; both standard and demonstration programs in some States impose 
co-payments for certain services. A number of State CHIP programs also 
impose premium and cost sharing requirements. Indian people receive 
IHS-funded services without such requirements in recognition of the 
Federal trust responsibility for the health, safety, and welfare of 
Indian people. To charge premiums or establish cost sharing mandates on 
the delivery of health care to Indian people is offensive and 
inconsistent with their belief that health care is a pre-paid treaty 
right.
    Section 404 of the Indian Health Care Improvement Act (IHCIA) 
already offers a means to address most of these problems by authorizing 
grants and contracts with tribal organizations. While an earlier 
version of the law authorized several million dollars between fiscal 
year 1981 through fiscal year 1984, funds were never appropriated and 
the specific funding authorization amounts were later struck rather 
than continued. NCAI urges Congress to re-establish funding streams 
under the IHCIA as a cost-effective way to maximize third party 
coverage and collections.
    Funding disparities arise not only from the difficulties ITU's face 
in enrolling Indian people in Medicare, Medicaid, and CHIP, but from 
other causes, including outdated limits for Medicare reimbursements for 
IHS and tribal health facilities. Other Medicare-covered services, such 
as those provided by freestanding clinics or by physicians and other 
practitioners have become increasingly important in Indian health, as 
in other health care systems, where there is increased emphasis on more 
cost-effective outpatient care. However, such services non-reimbursable 
to IHS clinics and physicians--a situation that Congress could easily 
be corrected this year in the reauthorization of the IHCIA. The growing 
prevalence of managed care in the U.S. health care system generally, 
and in Medicare, Medicaid, and CHIP, present special challenges for 
Indian people and the ITU's that serve them. Long before the term 
became popular in its current usage, Indian health programs were 
managing care. Due to widespread serious health conditions and limited 
funds, ITU's have long recognized and practiced early intervention, 
preventive care, case management, and pre-authorization of selective 
referrals for specialty care--all hallmarks of managed health care.
    Despite their expertise in managing health care services and costs, 
ITU's find it difficult to fit into the emerging managed care networks 
that are becoming increasingly common in Medicare, Medicaid, CHIP, and 
the private health insurance industry. Such networks may be unfamiliar 
with, or unreceptive to, the special characteristics and needs of the 
Indian health system. Some managed care systems recruit and enroll 
Indian people but refuse to reimburse ITU's for covered services if the 
Indian person went directly to the ITU provider they have used for 
years, without going through the new managed care gatekeeper first. 
Case management is often done by a managed care organization, 
unfamiliar with Indian beneficiaries' medical history and cultural 
context. Reimbursement to ITU's, when is provided at all, is often 
inadequate to cover the cost of care.
    The historic Balanced Budget Act of 1997 recognized some of these 
difficulties by exempting Indian people from the requirement that they 
be enrolled in the new Medicaid managed care State plan process unless 
there were an ITU participating in the process. However, the same 
protection was not extended to Medicaid managed care under the existing 
waiver processes, nor to managed care under Medicare or CHIP. Managed 
care is clearly the wave of the future. Exempting Indian people and 
health care providers may provide some short term relief, but in the 
long run, such an approach may simply produce the unintended result of 
leaving the Indian health system without the means to effectively 
participate and receive compensation from many public and private third 
party billing and collection systems.
    We must look for innovative ways to build on the strengths of 
Indian health providers in managing culturally appropriate health care 
in ways that fit into emerging managed care networks. For example, 
Congress may examine the possibility of managed care organizations 
contracting with ITU's to perform gatekeeper and case management 
functions for Indian beneficiaries. Another option might be to explore 
the use of risk-adjusted reimbursement rates for ITU's as a way to cope 
with costly health care conditions connected with many of the 
beneficiaries they serve. In this way, cost overruns created from 
insufficient reimbursement rates developed on an average beneficiaries 
health care profile, a formula that does not account for extensive 
health care conditions, could be absorbed more easily. Congressional 
funding for research and demonstration projects like those eluded to 
above would be an appropriate way to begin addressing the concerns over 
health care delivery funding disparities in Indian Country.
    Another primary reason for funding disparities may be the lack of 
long term care services in Indian Country. Long term care accounts for 
a large and growing part of Medicaid expenditures. There is a growing 
need for such services by Indian people; Indian elders are finally 
living long enough to need such care. However, providing needed long-
term care to the elderly is growing increasingly complex. Relatives are 
increasingly unavailable to care for elders because they must work 
outside the home. IHS funding can only provide limited home health care 
through nurses and contract health representatives with no funding 
available for nursing homes or assisted living services, and tribally 
or privately operated nursing homes and assisted living facilities are 
scarce and costly to build and operate.
    We are pleased that the President has chosen to focus more 
attention on long term care issues in recent years. However, proposals 
to date, such as the tax credit and long term care insurance, are 
likely to provide little help to meet the needs of the predominantly 
lower income population in Indian Country. We must have a comprehensive 
examination of the unmet needs and caregiving circumstances in order to 
develop appropriate, cost-effective solutions. The National Indian 
Council on Aging (NICOA) is beginning to develop such a study on long-
term care in Indian Country. NCAI urges Congress to support such 
endeavors and use the knowledge gained from these studies to justify 
increased funding in the area of long-term health care programs for 
Indian people.
    In order to reduce the disparities in health care spending we must 
address the barriers noted above and others yet to be identified. NCAI 
cannot do so alone. For that reason, we were encouraged to hear the 
DHHS Secretary and the HCFA Administrator, address the NCAI 1999 
Executive Council Winter Session and pledge greater consultation with 
Indian Country as well as a commitment to act upon what they hear. We 
also look forward to the Secretary's invitation for tribal leaders to 
join in developing future DHHS budgets, beginning this Spring with the 
fiscal year 2001 budget process. We have participated in the 
development of recent IHS budgets and welcome the opportunity to extend 
this process to the rest of the Department. NCAI encourages Congress to 
direct all cabinet-level departments and their agencies within the 
federal government to increase tribal access to the development of 
future administrative budgets.
    It is important to institutionalize mechanisms to make the 
government to government relationship real and enduring in meaningful 
ways. State and local governments and their representative 
organizations have long enjoyed recognition and procedures to 
facilitate their regular input into the policies, operations, and 
proposals of the Executive Branch. We request that DHHS address our 
current resolutions, including NCAI Resolution #MRB-98-037 (attached), 
which calls for Tribal consultation on proposed Medicare reforms; NCAI 
Resolution #MRB-98-093 (attached), which calls for use of a portion of 
national CHIP outreach funds to be used for Indian populations and 
having States provide copies of CHIP plans to tribes; NCAI Resolution 
#MRB-98-062A (attached), which opposes any Congressional reduction in 
Medicaid appropriations as part of any fiscal year budget resolution, 
and NCAI Resolution #GRB-98-046 (attached), which, among other things, 
calls for the DHHS to develop, with tribes, a plan that allows tribes 
to determine Medicaid eligibility for tribal member Medicaid 
beneficiaries.
    We appreciate the DHHS issuing a consultation plan and DHHS staff 
efforts to begin consultation discussions. We are also encouraged by 
the HCFA regional office efforts on consultation with tribes in their 
states and in their willingness to facilitate some Tribal/State 
dialogues. In conjunction with NCAI Resolution #MRB-98-093 (attached), 
we are especially pleased with DHHS' plans to consult with tribes on 
the implementation of state CHIP plans and the state mandate to 
describe CHIP accessibility to eligible Indian children through HCFA 
regional office consultation this spring. We also need to extend 
consultation beyond regional tribal matters to develop a mechanism to 
address national policy concerns in a regular and timely way.
    We appreciate the Administrator's recognition that it is important 
not just to listen but to do, to act on what is heard. In this regard, 
we are aware that HCFA provides resources to support regular national 
meetings with state Medicaid directors, as a whole, a smaller executive 
group, and through ongoing HCFA/State technical assistance groups that 
work on various issues. We would like to explore with HCFA how NCAI 
might jointly design a similar process for regular HCFA interaction 
with tribal governments to address the disparity issues noted above, as 
well as other emerging national policy issues of mutual concern.
    Mr. Chairman, as previously stated to this Committee on May 21, 
1998, during an oversight hearing on the unmet health care needs in 
Indian Country, NCAI urges Congress to fulfill its fiduciary duty to 
American Indians and Alaska Natives and to uphold the trust 
responsibility as well as preserve the government-to-government 
relationship, which includes the fulfillment of health care 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 
these on-going services as well as this trust responsibility. Allowing 
tribal governments and their citizens a voice in determining the 
priority of meeting unmet health care needs in Indian Country is a 
positive step towards acknowledging the fulfillment of health care owed 
to all Indian tribes.
C. Department of Education
    For fiscal year 2000, the Department of Education has requested $77 
million of Indian education. This request will allow the Department's 
Office of Indian Education (OIE) to fund formula grants to Local 
Education Agencies (LEAs), restore certain discretionary funding for 
OIE and national research activities through the Department's National 
Center for Education Statistics (NCES). NCAI fully supports this 
funding for OIE as it promotes the President's education initiatives. 
The following are NCAI's recommendations regarding OIE funding by 
category:
    1. Formula Grants to LEAs. For fiscal year 2000, $62 million is 
requested OIE's formula grant program to public schools. The Department 
estimates that this funding assists 461,000 Indian students attending 
public schools and over 5,000 students attending BIA schools for a 
total of 466,000.
    2. Special Programs for Indian Children. NCIA fully endorses the 
Department's effort to restore discretionary funding for certain OIE 
programs. The $13.3 million request includes $3.3 million for the 
Special Programs for Indian Children and $10 million for a new American 
Indian Teacher Corps which would focus on the need to increase the 
number of qualified Indian teacher in the field. NCAI fully supports 
President Clinton's new centerpiece to recruit and train 1,000 new 
Indian teachers over a five year period who will then teach in schools 
with high concentrations of Indian students. Of the Nation's more than 
two million elementary and secondary teachers, less than one percent 
are American Indian or Alaska Native. The lack of role models has 
contributed to the disproportionately high drop out rates and low 
academic achievement rates of Indian students. Overall, the Special 
Programs account, if funded, would continue the following two 
initiatives: (1) demonstration grants for early childhood and preschool 
education; and (2) preparation of Indians to take positions in teaching 
and school administration.
    3. Special Programs for Indian Adults. Since 1996, this program has 
received no funding. NCAI requests that $5 million be appropriated for 
this discretionary program devoted to increasing the educational skills 
of Indian adults.
    4. National Activities. NCAI supports the Administration requests 
of $1.7 million to augment the Year 2000 National Center for Education 
Statistics (NCES) Schools and Staffing Survey (SASS) and other research 
initiatives. The data collection effort would ensure that American 
Indian students are included in upcoming NCES surveys that will yield 
additional information on American Indian learners.
    5. Tribal College Executive Order. At the release of the 
Department's budget, no numbers were available for funding 
recommendations for the Tribal Colleges Executive Order which was 
funded in fiscal year 1998 at $200,000. NCAI has been informed by the 
Department that other agencies will have their resources combined for 
the order's implementation.
    6. The National Advisory Council on Indian Education (NACIE). Over 
the past two years, NACIE has be funded at $50,000 to carry out its 
congressionally mandated role as a Departmental advisor for Indian 
Education. Although this funding allows for the two required meetings 
per year, the fifteen-member presidentially-appointed board has no 
permanent office and must rely on OIE staff to carry out minimal 
functions. NCAI is concerned that the Administration's request would 
neglect the inclusion of one of its own commissions, particularly in 
its obvious concern for Indian education. Therefore, NCAI request that 
$500,000 be appropriated for NACIE in light of their increased advisory 
role in the implementation of the Indian Education Executive Order 
signed by President Clinton in August, 1998.
    7. OIE Fellowship Program. This program was last funded in fiscal 
year 1996 and represented a broad, non-targeted approach to ensuring 
Indian students participated in postsecondary education. At its peak, 
the program allowed approximately 150 Indian students annually to 
attend higher education institutions in fields as diverse as education 
to medical school. Although there has been increases in education 
funding, the American Indian higher education community has not been as 
fortunate. Complicating the situation is the fact that funding for 
higher education scholarships, at both the undergraduate and graduate 
levels through the Bureau of Indian Affairs and the Indian Health 
Service, have been cut over 50 percent since 1996. NCAI recommends that 
the fellowship program be funded at $5 million.
                            iii. 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 2000 budget request acknowledges the fiduciary duty owed to 
tribes. We ask that Congress maintain the federal trust responsibility 
to Indian Country and continue to aid tribes 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' initial comments regarding the 
President's fiscal year 2000 Budget.
                                 ______
                                 
 Prepared Statement of Kathye Gorosh, Project Director, the CORE Center
                        key issues for hiv/aids
    We are at a critical point in the care of patients with HIV/AIDS. 
We have achieved major goals in our basic science understanding of the 
course of HIV disease and have applied this understanding to the care 
of patients. Recent breakthroughs in drug therapies give reason to be 
hopeful for the successful treatment of HIV/AIDS.
    Throughout the country, we have witnessed a steady decline in the 
number of hospital admissions for AIDS care and outpatient clinics are 
experiencing a dramatic increase in the demand for out-patient care and 
services. These successes have led to increased numbers of AIDS 
patients surviving longer and once again becoming productive members of 
society. Although science has taken big steps toward making AIDS a 
long-term manageable disease, by no means do we have a cure for the 
largest public health crisis of the century.
    These favorable trends can be attributed in part to advances in 
opportunistic infection prevention and to highly active antiretroviral 
therapy (HAART). There are over 200 potent combinations of 
antiretroviral treatments that can be used in the fight against HIV/
AIDS. For each of these different regimens and drug combinations, there 
is a wide variation in a patient's adherence.
    With the hectic pace of the development and release of new drug 
treatments and care regimens for HIV/AIDS patients, it can be difficult 
even for specialty-care providers, and much more so for community-based 
care providers, to keep abreast of the most recent advances in care and 
medication usage. Without the ability to keep up with new drug 
developments, disease management is difficult, if not impossible, for 
community-based providers and patients.
    While the technology exists to implement sophisticated education 
networks for HIV/AIDS, there is no successful system in place that 
provides caregivers and patients the education and scientific tools 
needed to ensure that they make the most of the advances in care.
    Additionally, recent research has shown that the disproportionate 
incidence of HIV/AIDS among inner-city, minority populations is due in 
large part to low rates of adherence and lack of effective community-
based, comprehensive, health education and training systems for 
providers and patients.
    Lack of access to up-to-date information also hinders the ability 
of patients to fully understand the importance of adhering to their 
prescribed therapy. Unfortunately, incomplete adherence with medication 
regimens greatly increases the risk of the emergence of strains that 
are resistant to the newest therapies thus increasing the likelihood of 
the spread of HIV/AIDS.
    Low rates of adherence can most often be attributed to the 
following:
    1. Cost.--The cost for HAART therapy is enormous, as much as 
$10,000--$15,000 per patient per year. Although the federal program, 
AIDS Drug Assistance Program (ADAP), is designed to provide financial 
assistance for uninsured or underinsured HIV/AIDS patients in 
purchasing required medications, it has been unable to keep up with the 
increasing demands;
    2. Testing.--Many individuals are still hesitant to be tested for 
HIV and often go without a diagnosis. As a result, patients go without 
care until the symptoms become evident and they are in need of 
immediate services. Delays in testing result in patients who are much 
sicker when they present for therapy.
    3. Education.--Many HIV infected patients are unable to get timely 
clinical care or to adhere to complex and difficult drug regimens. 
Often patients have little or no understanding of newer therapies and 
their potential benefit, resulting in low levels of adherence and 
decreased health status.
    Disparities among inner city, minority populations are also evident 
in the effectiveness of HAART therapies. While there have been dramatic 
new developments in HIV care due to these new and more powerful 
medications, including a 42 percent decrease in the death rate from 
AIDS,\1\ the outcomes have not been as positive for minority 
populations.
---------------------------------------------------------------------------
    \1\ Centers for Disease Control HIV/AIDS Surveillance Report, June 
1998.
---------------------------------------------------------------------------
    This disparity in opportunistic infection trends between population 
groups most reflects differences in access to the full range of new 
therapies now available. It is also indicative of a lack of targeted 
outreach, education and adherence enforcement efforts aimed at high 
risk populations and at those lifestyles which contribute significantly 
to the transmission of HIV.
    The treatment of patients with HIV/AIDS in Chicago and other urban 
areas is made more difficult by the large number of patients receiving 
care and the large number of potential patients whose infections have 
not been diagnosed who will ultimately need care.
    Specialists alone are not able to provide primary care for all 
affected patients, especially those in underserved communities. This 
means that other providers need to be trained in the complicated care 
of patients with HIV/AIDS to insure that the new HIV medications are 
used appropriately and to the greatest benefit for all patients.
    To be effective, these community providers must have current 
medical data and protocols at their fingertips. They must be able to 
access immediate expertise to ensure the most accurate interventions 
and care for patients. Today, due to the lack of use of computerized 
clinical information systems in health care, especially for HIV/AIDS 
care, they are often unable to access this type of critical information 
or feedback in a timely fashion.
            21st century technology for education as the key
    While many piecemeal technology based health education systems for 
HIV/AIDS exist throughout the United States, there are none that are 
taking full advantage of today's cutting-edge scientific landscape.
    The adoption of computerized clinical information systems in health 
care lags behind the use of computers in most other sectors of the 
economy. There is no HIV educational system that provides care, 
clinical assistance and interactive education, while integrating the 
patients and community-based providers into the care giving and 
decision-making process. Especially given today's technological 
advances, this is a striking deficiency in health education systems for 
HIV/AIDS.
    At this critical time in the evolution of the long-term treatment 
of HIV/AIDS, it is important that we focus on the creation and 
implementation of comprehensive provider and patient education and 
training systems. This focus will:
  --Improve ability to manage disease and related conditions;
  --Improve treatment and prevention efforts;
  --Increase the rate of the early detection of HIV;
  --Increase the rate of treatment adherence; and
  --Decrease the spread of HIV.
    The Department of Health and Human Services has recognized that 
effective education of providers and patients as well as adherence 
management programs are the only way to prevent those behaviors that 
lead to the spread of resistant strains of HIV. It is critical that the 
federal government continue to focus its resources on creating 
comprehensive HIV education and training systems that fully integrate 
specialists, community-based providers and patients and evaluate the 
outcomes of those systems.
    The CORE Center believes that the most effective educational system 
is one which uses today's state-of-the-art technology and creates 
interactive networks of education that provide real-time feedback and 
enables providers to optimize care for HIV/AIDS patients.
    Thus, the Center has proposed the Community and Minority Education 
and Training Initiative (COMET) for HIV/AIDS which maximizes the 
Center's extensive technological resources and care expertise to create 
and implement a unique, regional HIV/AIDS education and training 
network for HIV/AIDS providers and patients in community based 
settings, especially minority communities.
  the community and minority education and training initiative (comet)
    To address this significant health crises in the minority 
communities specifically, the African American community, The CORE 
Center in Chicago, Illinois, proposes the implementation of its 
``Community and Minority Education and Training (COMET) Initiative''. 
Taking advantage of the new scientific landscape in the United States 
today, this initiative will demonstrate the significant improvements in 
care, prevention and education services through the use of a regional 
computer network. COMET will expand upon existing technology at the 
CORE Center to provide computer assisted patient shared decision making 
and HIV/AIDS education, training and care feedback to providers and 
patients in the Chicago metropolitan area.
    This demonstration project will create a national model of a 
technology-based education and training system for specialty and non-
specialty, community-based HIV/AIDS care providers as well as the 
education of HIV/AIDS patients. It will address an existing national 
need in minority communities for the effective integration of 
educational programs to enhance provider performance and improve 
provider and patient ability to manage disease. It will improve patient 
response and adherence to treatment regimens and place emphasis on the 
incorporation of patients into a shared decision making process. 
Ultimately, this initiative will improve the quality of, and access to, 
care, increase adherence, and control cost.
    The Community and Minority Education and Training Initiative will 
result in several key outcomes including:
  --Improve non-specialist and patient access to the most current 
        information on HIV/AIDS care, treatment, and drug protocols
  --Provide critical and, as of yet non-existing, access to immediate 
        feedback for providers to proposed patient care regimens
  --Facilitate the supervised integration of community-based providers 
        into the care of HIV/AIDS--thus expanding patient access to 
        care for HIV/AIDS
  --Provide a model for computer assisted patient shared decision 
        making
  --Improve physician's and patient's ability to manage HIV/AIDS and 
        related infectious diseases.
  --Improve patient adherence to complex care regimens
  --Improve surveillance and response efforts at the local, state and 
        federal levels
  --Increase providers' ability to identify population specific 
        treatment and care issues
  --Reduce the emergence of additional resistant strains of HIV/AIDS
  --Provide nationally relevant outcomes data that will be useful to 
        cities across the United States as they grapple with issues of 
        access, adherence, and cost and quality of care.
    Through the implementation of a community-wide HIV education and 
training network, this initiative will provide nationally relevant 
outcomes data which will be useful to cities across the United States 
as they grapple with issues of access, adherence, and cost and quality 
of care.
    The CORE Center, with its location in the heart of an inner-city, 
minority neighborhood, its single-site location for comprehensive HIV 
outpatient services, screening clinic, and its state-of-the-art 
information system, is uniquely positioned to implement this 
technology-based provider and patient education initiative. 
Additionally, because the Center's population is predominately African 
American and Latino, it will provide a unique model for improving the 
quality, efficacy and cost of care for minority populations through the 
use of a technology based education system for providers and patients 
of HIV/AIDS care.
    Project COMET will demonstrate the efficacy of the technology-based 
education and training system in the following areas:
    1. Education.--Demonstrate the ability of a technology based 
educational system (or distance learning system) to update and educate 
specialty and community-based providers and to educate and involve 
patients in a shared decision-making process.
    2. Early Intervention.--Demonstrate the effect of a technology 
based educational system on the ability of the community-based and 
specialty care providers to target HIV screening of inner-city 
populations with sexually transmitted diseases (STDs), so that advances 
in HIV care will be made available as early as possible in the course 
of HIV disease and prevent risky behaviors that result in the spread of 
the HIV and related infectious diseases;
    3. Adherence.--Demonstrate the ability of the system to enable non-
specialty and community-based care providers to implement an aggressive 
adherence program to ensure the application of sound treatment 
principles and protocols, medication adherence and clinical follow-up 
of inner-city, minority patients; and
    4. Outcomes Research.--Collect and analyze data to measure patient 
outcomes, the cost of care by different specialty and community-based 
providers as well as patient and provider adherence. In addition, this 
initiative will disseminate these findings.
    The CORE Center is seeking $6.9 million in federal funding to 
implement this nationally significant initiative that will thoroughly 
examine the effectiveness of a technology based educational system on 
the improvement of care and treatment of HIV/AIDS. The Center believes 
that federal funding would be beneficial not only to the federal 
government but to cities across the nation as they grapple with this 
very complex issue. COMET will complement federal efforts to develop 
HIV/AIDS policy in areas of treatment and information deficiencies, 
especially as they relate to the epidemic in minority, inner-city 
communities.
                                 ______
                                 
 Prepared Statement of the University of Medicine and Dentistry of New 
                                 Jersey
    The following is the testimony of the University of Medicine and 
Dentistry of New Jersey (UMDNJ), the largest public health sciences 
university in the nation. The UMDNJ statewide system is located on five 
academic campuses and consists of 3 medical schools, and schools of 
dentistry, nursing, health related professions, public health and 
graduate biomedical sciences. UMDNJ also comprises a University-owned 
acute care hospital, three core teaching hospitals, an integrated 
behavioral health care delivery system, a statewide system for managed 
care and affiliations with more than 100 health care and educational 
institutions statewide. No other institution in the nation possesses 
the resources which match our scope in higher education, health care 
delivery, research and community service initiatives with state, 
federal and local entities.
    We appreciate this opportunity to bring to your attention the 
priority projects of UMDNJ that are consistent with the mission of this 
committee. These include a Child Health Institute; a Neurological 
Institute; geriatric initiatives and our efforts to combat threats of 
bioterrorism.
    The Child Health Institute of New Jersey is located at UMDNJ-Robert 
Wood Johnson Medical School (RWJMS) in New Brunswick, New Jersey. As 
part of the state's public higher education system, the medical 
school's 2,500 full-time and volunteer faculty train about 1,500 
students in medicine, public health and graduate programs and ranks in 
the top one-third of the country with regard to the percentage of its 
students who practice in primary care specialties after completing 
their residency training. The School ranks in the top one-third in the 
nation in terms of grant support per faculty member. RWJMS is also home 
to The Cancer Institute of New Jersey, the only NCI-designated clinical 
cancer center in New Jersey; The Center for Advanced Biotechnology and 
Medicine; and the Environmental and Occupational Health Sciences 
Institute, the largest environmental institute in the world.
    The Child Health Institute is a comprehensive biomedical research 
center focused on the health and wellness of children. In this program, 
medical researchers direct efforts toward the prevention and cure of 
environmental, genetic and cellular diseases of infants and children. 
The Institute is integral to the long-term plan for the enhancement of 
research at the medical school in developmental genetics, particularly 
as it relates to disorders that affect a child's development and 
growth, both physically and cognitively.
    The program will enable the medical school to expand and strengthen 
basic research efforts with clinical departments at the Robert Wood 
Johnson University Hospital and with the new Children's Hospital in the 
areas of Obstetrics, Pediatrics, Neurology, Surgery and Psychiatry. The 
Child Health Institute will fill a critical gap in services through the 
recruitment of an intellectual base upon which basic molecular programs 
in child development will build.
    The Child Health Institute will focus research on the molecular and 
genetic mechanisms which direct the development of human form, 
subsequent growth, and acquisition of function. Broadly, faculty and 
students will investigate disorders that occur during the process of 
development to discover and study the genes contributing to 
developmental disabilities and childhood diseases; to determine how 
genes and the environment interact to cause childhood diseases; and to 
identify the causes and possible avenues of treatment of cognitive 
disorders broadly found among conditions such as mental retardation, 
autism and related neurological disorders.
    Despite effective therapy, asthma related health needs have risen 
by almost 50 percent over the past decade with hospitalization rates 4 
to 5 times higher for African Americans. Methods of prevention have 
only been partially effective. Treatments with regimens are relatively 
unchanged. Effective prevention and treatment will require more 
understanding of the molecular mechanisms of the stimuli-receptor 
reactions that elicit asthmatic attacks as well as more detailed 
understanding of the molecular reactions effected by cells once 
stimulated by environmental factors. The molecular and cellular basis 
of injury reactions, including reactions of an allergic nature, will be 
a focus of the research of the Child Health Institute. Injury reactions 
are central to diseases of many different etiologies, yet have come to 
be understood to be involved in clinical problems broadly from asthma 
to atherosclerosis. Continued exploration of the basic molecular 
underpinnings of injury reactions will lead to more rational methods to 
prevent, minimize and treat asthmatic reactions and deaths. Urban 
academic medical centers are at the epicenter of the current escalation 
in asthma and the Child Health Institute is well positioned to address 
this critical issue.
    The CHI builds on existing significant strengths within RWJMS and 
our associated joint research institutes with Rutgers University. The 
CHI will act as a magnet for additional growth in research and health 
care program development in New Jersey. Fourteen senior faculty will 
direct teams of M.D. and Ph.D. researchers, visiting scientists, 
postdoctoral fellows, graduate students and technicians for a full 
complement of some 130 employees. At maturity, the Institute is 
expected to attract $7 to $9 million dollars of new research funding 
annually. The Institute has already received a $5.9 million grant from 
the Robert Wood Johnson Foundation, one of the largest philanthropic 
foundations in the world, and $5.9 million from Johnson & Johnson, the 
world's largest manufacturer of health care products.
    We respectfully request $2 million for targeted program assistance 
for the Child Health Institute of New Jersey.
    The Neurological Institute of New Jersey was established by the 
UMDNJ-New Jersey Medical School and UMDNJ-University Hospital, both 
based in Newark, New Jersey, as a center of excellence in the 
neurosciences in recognition of the fact that neurological diseases are 
a leading cause of death and disability and the widespread expertise 
that exists in this discipline on our Newark campus. No other entity in 
New Jersey approaches the depth of human expertise, technological 
advancements and research achievements that currently exist in the wide 
variety of services at the medical school and the hospital.
    UMDNJ-University Hospital is the major provider of tertiary 
neurological and neurosurgical services to the State of New Jersey, 
including patient care, education and research. The NJMS Department of 
Neurosciences ranks sixth nationally in research funding with $4 
million annually. NJMS offers the only fully accredited neurosurgical 
residency program in the state.
    The Neurological Institute would serve as an umbrella under which 
clinical, research and educational efforts would be focused. The 
delivery of clinical care would be provided through University 
Hospital, its clinics, physician offices and affiliates. Education 
would be provided by multidisciplinary teams focused on neurological 
disease including prevention, early diagnosis, treatment and 
rehabilitation. The Institute would collaborate with its regional 
academic affiliates, the New Jersey Institute of Technology and 
Rutgers-Newark in promoting research.
    Neurological disorders, including stroke, epilepsy, multiple 
sclerosis and Alzheimer's disease are common and debilitating. 
Nationally, neurological disorders are one of the leading causes of 
death and disability. Fifty million Americans are affected by these 
diseases and there are five million new cases diagnosed yearly. 
Neurological diseases account for about $400 billion in health care 
costs and lost productivity.
    While the devastation of neurological disease and injury can be 
horrific, amazing breakthroughs in treatment and new drugs or surgical 
techniques are occurring. These breakthroughs require painstaking 
research and testing, significant financial support, and a 
concentration of clinical expertise and potential research subjects in 
a controlled environment. Unfortunately, the lack of such a statewide 
focus in the neurosciences has limited New Jersey's participation in 
and access to leading edge research, clinical trials and beta-site 
technology. The Neurological Institute will allow New Jersey to 
establish the credentials and clinical material necessary to compete 
for the advanced basic science and clinical research projects that 
currently are out of reach. Also, the critical mass of expertise 
provided by the Institute will hasten the pace at which theories become 
therapies in New Jersey through its educational opportunities and 
sponsorship of new technology at its clinical sites.
    We respectfully request $1 million for operational, research and 
treatment advances for the Neurological Institute of New Jersey.
    The Center for Aging at UMDNJ-School of Osteopathic Medicine in 
Stratford, New Jersey is a multi-disciplinary, multi-departmental 
center of excellence in clinical services, education and research 
committed to meeting the diverse health care needs of an aging 
population. The Center's emphasis on wellness and health promotion 
encourages patients to improve or maintain their health and their 
independence. The Center is in a unique position to assume the 
leadership of a statewide Institute on Aging and Interdisciplinary 
Practice to serve the growing numbers of elderly in the state and the 
health care professionals who provide care to this population.
    The Center for Aging has educated more than 7,500 health care 
professionals from multiple disciplines on caring for elderly 
individuals. Creation of a statewide Institute will permit the Center 
to provide leadership and share its expertise in the development of an 
array of services and programs that will enhance the knowledge of 
health care providers, form new partnerships in the delivery of high 
quality geriatric care, and promote research on models of 
interdisciplinary practice and care management which will benefit New 
Jersey's senior citizens.
    The Center administers a variety of innovative health care programs 
developed in response to the shift from hospital care to ambulatory or 
outpatient treatment. As the southern New Jersey site for evaluation of 
Alzheimer's Disease, the School of Osteopathic Medicine provides a 
comprehensive program for the evaluation of dementia. Conducted by the 
Center's multi-disciplinary team, the evaluation process includes 
medical, neurological, functional and psychosocial evaluation. Follow 
up care and monitoring is provided where needed. Elderly patients with 
multiple, complex health problems and needs receive comprehensive 
evaluations and are referred to existing community resources and 
referring physicians.
    In addition to education and patient care, research is a vital 
component of the Center. The various geriatric services offer ideal 
opportunities to gather data on a diverse elderly population. Faculty, 
staff and students in the Center are actively engaged in clinical drug 
trials, research on aging-related health problems and other service-
based projects as part of the Center's mission to improve care to the 
elderly and enrich educational experiences.
    We respectfully request $2.5 million to expand and enrich our 
programs in geriatric education, research and patient care into a 
statewide network to serve New Jersey's aging population.
    In our complex world of instant communication and ease of global 
transportation, disaffected individuals or political groups have access 
to highly destructive weapons of terror. With our open society the 
United States is particularly at risk to an individual with a grudge, a 
band of ideologically motivated fanatics, or to nations seeking 
revenge. The possibility of the employment of weapons of mass 
destruction on an innocent population has already become a reality with 
the Sarin nerve gas attack in the subways of Tokyo.
    State and local governments and health organizations need reliable 
information upon which to develop and coordinate response plans for 
contingencies due to weapons of mass destruction. They need programs to 
educate planners and response teams on the public health aspects of 
these threats and how to recognize and respond to them. In addition, 
they need to understand both the short and long term implications for 
human and ecologic health. To develop such a plan requires a broad base 
of scientific and educational expertise. Scientific expertise is also 
needed to devise approaches for the early detection and treatment of 
biological and chemical weapons of terror.
    As the nation's most densely populated state, we in New Jersey have 
a particular concern about being targets of bio- and chemo-terrorist 
activities. Our communities abut each other and our traffic patterns 
are statewide making us especially vulnerable to infectious disease. 
There are no obvious geographical boundaries to readily institute a 
quarantine. Our central location as a transportation hub for the 
populous Northeast also makes us a prime target.
    There are three types of weapons available to them. For one, 
explosive devices, although increasingly deadly, our society has 
developed emergency response approaches to deal with, including 
explosions caused by sources as varied as factory processes and gas 
mains. The other two types of terrorist weapons are relatively new and 
present particular challenges to our normal response processes. These 
are chemical weapons of terror, such as nerve gas, and biological 
weapons of terror, such as anthrax bacillis. Chemical and biological 
weapons differ dramatically from explosions in that for these newer 
threats early recognition and diagnosis is crucial for both those 
initially affected and for others who might yet be affected through 
spread of infection or contact with the chemical.
    Education of emergency responders to correctly identify these 
threats is crucial to minimize the impact of biological and chemical 
weapons, as well as to protecting the emergency responders themselves. 
Compounding our problems is the need for a better understanding of the 
effects of likely chemical and biological agents of terrorism, and of 
the means to prevent their spread and treat their victims.
    The nation's foremost program in education and training concerning 
chemical and physical threats is headed by a UMDNJ faculty member, Dr. 
Audrey Gotsch, who is currently President of the American Public Health 
Association. Among her programs is the Center for Education and 
Training which provides training concerning chemical and physical 
agents to more than 160,000 police, firefighters, municipal and state 
employees, as well as to physicians, nurses and industrial hygienists.
    Also, researchers at the Child Health Institute at the UMDNJ-Robert 
Wood Johnson Medical School in New Brunswick, New Jersey are looking 
into the effects of radiation on children in utero and on their growth 
and long-term development. Children who survive bioterrosist attacks 
live and carry forward the results of that attack in a different manner 
than exposed adults. The basic mechanisms of biology that operate to 
cause serious neurological injury can be counteracted or reversed if 
properly understood at the molecular and chemical level.
    Because of its scientific expertise, UMDNJ is uniquely qualified to 
develop a program to educate state and municipal governments, emergency 
responders and health and hospital professionals on planning for the 
response to terrorism; to train personnel to deal with threats of 
terrorism and how they affect public health; and to conduct research 
into the effects of chemical agents on the general population, with an 
emphasis on the long-term effect on children.
    We respectfully seek $1.5 million through the Department of Labor/
HHS/Education to expand our research, education and training programs 
in response to threats of chemical and biological terrorism.
                                 ______
                                 
      Prepared Statement of the Coalition for American Trauma Care
    The Coalition for American Trauma Care is pleased to provide 
testimony on the importance of supporting injury prevention and trauma 
care activities across the U.S. Public Health Service.
    The Coalition's membership consists of leading trauma center 
institutions, leading trauma clinicians, and 15 national organizations 
including the American Association for the Surgery of Trauma, the 
Eastern Association for the Surgery of Trauma, the Orthopaedic Trauma 
Association and the American Burn Association. The mission of the 
Coalition is to improve trauma and burn care through improved care 
delivery systems, prevention efforts, and research.
    Increased attention in recent years to the problem of injury has 
been greatly needed. Injury is one of the most important public health 
problems facing the United States today. It is the leading cause of 
death for Americans from age 1 through age 44. More than 145,000 people 
die each year from injury, 88,000 from unintentional injury such as car 
crashes, fires, and falls, and 56,000 from violence-related causes. 
Over 85 children and young adults die from injuries in the U.S. every 
day translating into 30,000 deaths annually. Injury is also the most 
frequent cause of disability. Millions of Americans are non-fatally 
injured each year leaving many temporarily disabled and some 
permanently disabled with severe head, spinal cord, and extremity 
injuries. Because injury so often strikes the young, injury is also the 
leading cause of years of lost work productivity and, at an estimated 
$224 billion in lifetime costs each year, trauma is our nation's most 
costly disease.
    With this as background, the Coalition makes the following 
recommendations regarding funding for injury prevention and trauma and 
burn care activities in fiscal year 2000:
    Trauma and Emergency Medical Services Systems.--Last year, Congress 
reauthorized the Trauma Care Systems Planning and Development Act for 
three years and specified that $6 million should be provided to 
stimulate further progress in trauma and emergency medical service 
system development across the nation, but particularly in rural areas. 
The Coalition supports this funding level for fiscal year 2000. The 
legislation calls for matching funds from the states as follows: 100 
percent federal in year one; 1:1 in year two; 1:3 in year three. This 
program, administered by the Health Resources and Services 
Administration, was originally enacted in 1991 and was funded for three 
full years at approximately $5 million. The program was reauthorized in 
1994 for another three years, but its fiscal year 1995 funding was 
rescinded and no funding was provided in fiscal year 1996 causing the 
demise of the program. Under the program, nearly 40 states received at 
least one year of funding. Many used funds to initiate trauma systems 
development, but were unable to proceed with full implementation due to 
the loss of funding.
    Attached to my testimony is a ``quick and dirty'' survey of states 
conducted by the National Association of State EMS Directors on May 30, 
1997 to assess how the HRSA administered program, known as the Division 
of Trauma and Emergency Medical Services (DTEMS), had impacted state 
trauma system development. As you can see, of the 43 states responding, 
30 had received DTEMS funding and fully 28 reported that the loss of 
the DTEMS funding hurt their efforts at trauma system development. Five 
states reported that the DTEMS program helped to initiate their trauma 
system, and now have fully functional systems. Another 18 states 
reported they had started their trauma system development with DTEMS 
funding, but could not finish the job. Fully 26 states reported that 
they do not have any state funding for trauma system development.
    Why is this important? Numerous studies have shown, over the years, 
that organized systems of trauma care dramatically lower the number of 
preventable deaths resulting from serious injury. Some studies, for 
instance, have shown that preventable death rates can drop as much as 
50 percent the first year a trauma system is implemented, and can be 
lowered to under 5 percent in years thereafter. These findings were 
noted in a 1985 General Accounting Report which recommended federal 
leadership to support the development of trauma care systems. The 
important impact of trauma systems in saving lives was also noted in a 
report issued last November by the Institute of Medicine entitled, 
Reducing the Burden of Injury. One of the recommendations of the IOM 
panel is as follows:
    ``The Committee supports a greater national commitment to, and 
support of, trauma care systems at the federal, state and local levels 
and recommends the reauthorization of trauma care systems planning, 
development, and outcomes research at the Health Resources and Services 
Administration.''
    Congress has already accomplished that legislative step of 
reauthorization. The trauma and emergency medical services community 
now urges you to provide the funding resources necessary to finish the 
job of trauma and emergency medical services system development in 
every state. Until every state has adequate emergency medical services 
and trauma care systems, particularly states with large rural areas, we 
must continue to provide federal leadership. Until that job is done, it 
means that an American family driving across the country this summer to 
visit our national parks and other attractions will experience a 50 
percent difference in their chance of surviving a serious crash every 
time they cross a state line.
    National Institutes of Health.--The Coalition for American Trauma 
Care supports the Ad Hoc Group for Medical Research Funding's 
recommendation of a 15 percent increase in funding for the NIH for 
fiscal year 1900. However, the Coalition is very concerned that as much 
of the increase as possible come from funds that are in addition to the 
currently tightly capped discretionary accounts. While the Coalition 
believes the National Institutes of Health can effectively use 
significant increases in funding, these increases should not come at 
the expense of other critical public health programs.
    The Institute of Medicine's November, 1998 report, Reducing the 
Burden of Injury, makes the following recommendation with regard to the 
National Institutes of Health:
    ``The Committee supports a greater focus on trauma research and 
training at the National Institutes of Health and recommends that the 
National Institute of General Medical Sciences (NIGMS) elevate its 
existing trauma and burn program to the level of a division. To 
accomplish this goal, the Committee recommends the expansion of 
research and training grants and the formation of an NIH-wide mechanism 
for sharing injury research information and for promoting 
collaborations spearheaded by NIGMS.''
    As the IOM report delineates, NIH spends less than one percent of 
its overall resources for injury-related research despite the enormous 
public health impact of injury in the U.S. The Coalition supports the 
IOM Injury Committee's findings and recommendations with regard to the 
NIH and urges the Subcommittee to include report language in the fiscal 
year 2000 Labor-HHS-Education Appropriations bill which restates the 
IOM's recommendation.
    The Coalition also supports an increased emphasis within the NIH on 
clinical research so that the benefits of basic science efforts can 
reach the bedside.
    Other funding recommendations the Coalition for American Trauma 
Care Supports for fiscal year 2000:
    National Center for Injury Prevention and Control.--The Centers for 
Disease Control and Prevention has developed a new five year initiative 
called ``SAFE AMERICA . . . . Through Injury Control.'' The program is 
designed to implement in states and local communities those injury 
control strategies that have been tested over the past several years by 
the National Center for Injury Prevention and Control and proven to be 
successful. The Coalition urges you to provide $20 million funding for 
this life saving program. Within the Safe America initiative, the 
Coalition has particular interest in funding for trauma systems 
research. NCIPC has initiated a three year grant program to study 
trauma outcomes. The Coalition recommends continued funding of this 
research effort at a level of $2 million for fiscal year 2000. The 
Coalition also seeks funding support within the Safe America initiative 
for implementing smoke detector programs which CDC research 
demonstrates reduces burn-related injuries, and bicycle helmet use 
efforts to help prevent the 20,000 head injuries that occur every year.
    Preventive Health/Health Services Block Grant (PHHS).--The 
Coalition urges you to provide $182 million in funding in fiscal year 
2000 for this program which is the largest source of federal funding 
for state Emergency Medical Services (EMS)--the first line of defense 
against death and disability resulting from severe injury. This program 
has sustained cuts in funding over the past several years. Every time 
the block grant has been reduced EMS funding has dropped precipitously. 
In 1981 EMS funding was $30 million; it is now under $10 million for 
the 50 states.
    The Agency for Health Care Policy and Research (AHCPR).--The Agency 
for Health Care Policy and Research is the only federal agency devoted 
to assessing the most cost-effective use of the health tax dollar. 
AHCPR is an important source of funding to assess trauma and burn 
services research so that emergency response and treatment approaches 
to the very costly problem of serious injury are as efficient and cost-
effective as possible. Trauma and burn clinicians are constantly 
challenged to find ways to cut costs in the current managed care 
environment, but want to do it correctly by maintaining, or improving, 
quality of care and patient outcomes. Accomplishing this goal requires 
a specific research investment that can only be undertaken by the AHCPR 
with an increase in funding for this essential agency. The Coalition 
urges you to provide $225 million in fiscal year 2000 funding so that 
the AHCPR can continue its widely praised Medical Expenditure Panel 
Survey and also fund continuing, and most importantly, new critical 
quality of care research.
    Children's Emergency Medical Services.--Injury is the leading cause 
of death for children in the U.S. The Children's EMSC program at the 
Health Resources and Services Administration is designed to improve the 
emergency response to children who are critically injured or ill. The 
Coalition urges you to provide $17 million in fiscal year 2000 
appropriations for this vital program.
    Traumatic Brain Injury.--Traumatic brain injury is a leading cause 
of trauma-related disability. Brain injury is a silent epidemic that 
compounds every year, but about which still little is known. The 
Coalition urges you to provide $15 million in fiscal year 2000 
appropriations to fully fund the Traumatic Brain Injury Act, which is 
in the process of reauthorization, as follows: $5 million for CDC for 
surveillance so that we can learn the incidence and prevalence of brain 
injury in the U.S. population and $7.5 million for HRSA grants to 
states for demonstration projects to improve access to health care and 
other services and $2.5 million for special research projects at the 
National Institutes of Health.
    The Coalition for American Trauma Care appreciates the support the 
Subcommittee has provided to many trauma and burn related programs in 
the past. However, much remains to be done to address this leading 
public health problem so that we can achieve the substantial health and 
social welfare cost savings addressing increased research, timely 
treatment and rehabilitative interventions, and prevention will provide 
the citizens of the United States. The Coalition looks forward to 
working with you to achieve these goals.
                                 ______
                                 
   national association of ems directors survey of impact of federal 
                  legislation on state trauma systems

Survey sent out May 30, 1997--43 States responded

1.  We received DTEMS funding.....................................    30
   We did not receive DTEMS money.................................    13
2.  Our trauma system was in place already before DTEMS...........    13
   We started our system with DTEMS dollars, but could not finish 
    it............................................................    18
   We started our system with DTEMS dollars, and have functional 
    system now....................................................     5
   Not applicable, no response, have done nothing.................
3.  We have a trauma plan written, but not implemented............    14
   We have statutory authority and have designated facilities 
    (some/all)....................................................    19
   We have statutory authority, but have NOT designated facilities     4
   Not applicable, have no system plans...........................     5
4.  We have state funding dedicated to our trauma system..........    16
   We do not have state funding...................................    26
   No answer......................................................     1
5.  The loss of the DTEMS program hurt our efforts................    28
   Did not hurt our efforts.......................................    13
   No answer......................................................     2
                                 ______
                                 
         Prepared Statement of the Coalition for Health Funding
    The Coalition for Health Funding is pleased to provide the 
Subcommittee with a statement recommending fiscal year 2000 funding 
levels for the agencies and programs of the Public Health Service. The 
Coalition is a nearly thirty year old alliance of 40 national health 
associations with a combined membership of 40 million health care 
professionals, researchers, lay volunteers, patients and families. The 
Coalition is dedicated to working with Congress, in a non-partisan 
fashion, on behalf of federal health discretionary programs, primarily 
the agencies and programs within the Public Health Service. It is the 
oldest, most broadly based coalition focused on the breadth of 
discretionary health spending.
    The Coalition sincerely appreciates the strong and continued 
support that the Subcommittee has given to health discretionary 
programs.
    This year, the Coalition's recommendations, and the work of this 
Subcommittee, have special significance as we prepare the nation to 
respond to the public health challenges in the first year of the next 
millennium. The health of the American people, now and into the twenty-
first century, is certainly one of the nation's most valuable 
resources--could we even begin to calculate the value of America's 
public health? The pennies we invest in public health today will reap 
billions of dollars of future returns. Of the thirty years of American 
life expectancy added this century, fully 25 years are due to public 
health interventions, including control of infectious diseases, and 
improvements in nutrition, sanitation, and occupational safety. In the 
coming century, we expect our continued investments in public health to 
yield equally remarkable returns.
    But we also face serious challenges in public health in the new 
century. First, the global economy places us at increased risk for new 
and emerging infectious diseases. Second, bioterrorism and other 
potential threats to significant numbers of Americans will require 
major investments in the country's public health infrastructure to 
ensure that when and where the public's health is threatened, we have 
the resources to respond quickly and effectively at the local, state 
and national levels. Third, chronic disease continues to claim the 
health and productivity of too many Americans too early in their lives. 
Fourth, access to medical care, particularly preventive care and early 
intervention, is still lacking for far too many Americans who live in 
rural and inner city areas.
    These are the major challenges ahead in the 21st Century. To 
address them and reap the potential of enormous positive returns 
requires adequate investment across the continuum of public health 
activity. We must simultaneously support basic biomedical, behavioral 
and health services research, community-based prevention efforts, 
targeted service delivery for vulnerable and medically underserved 
populations, and education of a health professions workforce. The 
coalition's members recognize the interdependency of these goals and 
that no one component of the public health continuum can be effective 
without the strong support of the others.
    I would like to provide you with just a few examples of this--how 
our investment in the research that is conducted at the National 
Institutes of Health, for example, leads to improved health outcomes 
through our investment in the other public health agencies and 
activities.
    SIDS is the leading cause of death for infants under one year of 
age, however, deaths due to SIDS have fallen by more than 38 percent as 
a direct result of the National Institutes of Health (NIH) research 
advances working in partnership with other public health agencies and 
the private sector. Meta-analyses of SIDS studies revealed the role of 
sleeping position in infant deaths. NIH initiated the ``Back to Sleep 
Campaign,'' an educational effort that encourages parents and other 
care givers to place infants on their backs to sleep to reduce the risk 
of SIDS. Working with the private sector, and through the Maternal and 
Child Health Block Grant administered by the Health Resources and 
Services Administration (HRSA), this research has reached parents of 
all socioeconomic levels and has resulted in a dramatic reduction in 
SIDS deaths. However, we also know that further outreach is needed and 
necessary to get this message out to minority group communities as well 
as to child care centers.
    We now know, due to research conducted by the NIH, that if all 
American women consumed 400 mcg of the B vitamin folic acid each day, 
50-70 percent of all cases of spina bifida and anencephaly would be 
prevented, saving about $245 million per year. The Centers for Disease 
Control is conducting a national public awareness effort to educate 
women of child bearing age to consume enough Vitamin B folic acid 
through foods and, as necessary, through vitamin supplements.
    We look to NIH-sponsored research to help develop drugs to 
successfully treat those with HIV/AIDS, but we look to HRSA's Ryan 
White program to make the drugs affordable and available to those who 
are infected, but who can't afford care.
    In the area of chronic disease, our investment in NIH research has 
identified a limited number of unhealthy lifestyle behaviors, many 
adopted in early life, which contribute to hundreds of billions of 
dollars in direct and indirect cost due to heart disease, cancers, 
diabetes, and intentional and unintentional injuries. Investing in 
nationwide disease prevention and health promotion activities to reduce 
this largely preventable national burden will more than pay its way. 
Many areas of the public health service are engaged in this important 
effort: CDC, AHCPR, HRSA, and Office of Public Health and Science among 
others.
    The Coalition for Health Funding appreciates the difficult budget 
constraints facing the Subcommittee, but believes the relatively small 
proportion of federal funding now spent on public health is an 
important investment in the future because it will ultimately save 
billions of dollars. As a proportion of overall health expenditures, 
federal public health activities account for $29 billion--three 
percent--of the estimated $1 trillion spent on health care in the 
United States. It is critically important, as we balance the federal 
budget, that we are not penny wise and pound foolish and that our 
successes over the past 200 years continue into the next millennium.
    Each year the Coalition for Health Funding works with other 
national health alliances to determine an appropriate level of federal 
support for all health discretionary programs. For fiscal year 2000 the 
Coalition is recommending $34 billion be provided to address the 
nation's needs in the areas of biomedical, behavioral, and health 
services research; disease prevention and health promotion; health 
services for vulnerable and medically underserved populations; health 
professions education; and substance abuse and mental health services. 
The Coalition's recommendation also includes funding for the Indian 
Health Service and the Food and Drug Administration, which are not 
within the jurisdiction of this Subcommittee, but are important 
agencies within the U.S. Public Health Service. The Coalition 
appreciates that these funding levels may appear excessive, but they 
reflect both the professional judgment within the various agencies as 
well as our own members' assessment of community need. The Coalition 
presents these recommended funding levels to the Subcommittee in the 
hope that it will view them as important targets for optimal health 
outcomes.
    The following is a partial list of the Coalition's findings and 
recommendations; the attached table provides the Coalition's 
recommendations for all the public health agencies:

National Institutes of Health (NIH)

                        [In billions of dollars]

Fiscal year 1999 appropriation....................................15.652
President's fiscal year 2000 request..............................15.972
CHF fiscal year 2000 recommendation...............................18.000

    The Coalition for Health Funding recommends a fiscal year 1900 
funding level of $18 billion for NIH, but wishes to express the strong 
caution that this increase must not come at the expense of other public 
health programs. This increase is $2 billion (12.6 percent) more than 
the President's request and $2.3 billion (15 percent) more than fiscal 
year 1999 funding.
    The Coalition supports the proposal of the Ad Hoc Group for Medical 
Research Funding, which calls for a 15 percent increase in funding for 
the National Institute of Health (NIH) in fiscal year 2000 as the next 
step toward doubling the NIH budget by 2003. But in recognition of the 
difficulty in achieving this goal under the current spending limits, 
the Coalition cautions that this increase must not come at the expense 
of other public health programs. Moreover, we urge Congress to explore 
all possible options to identify the additional resources needed to 
support this increase.
    The Coalition recognizes the critical importance of the research 
conducted at the NIH and that increases provided in fiscal year 1999 
must be significantly continued in order to reap our investment. 
Volatility and dramatic fluctuations in funding can be as harmful to 
the research enterprise as inadequate growth. We risk wasting the 
investment that has been made this year if scientists do not have the 
resources in future years to continue the work begun with fiscal year 
1999 funds. The President's fiscal year 2000 request of $320 million 
over the fiscal year 1999 funding level clearly jeopardizes our the 
progress we are making in medical research.
    The Coalition also supports the Ad Hoc Group for Medical Research 
Funding's statement that medical research is the foundation underlying 
a continuum of public health programs and activities that include 
health services and outcomes research, health care delivery to 
underserved populations, health professions education, and disease and 
injury prevention. The Ad Hoc Group states that without these essential 
public health partners, we will fail to achieve the goal of a 
healthier, more productive nation.

Centers for Disease Control and Prevention (CDC)

                        [In billions of dollars]

Fiscal year 1999 appropriation....................................   2.9
Fiscal year 2000 President's request..............................   3.1
CHF fiscal year 2000 recommendation...............................   3.9

    The Coalition for Health Funding recommends an overall funding 
level of $3.9 billion for the CDC in fiscal year 2000. This is $800 
million (25 percent) more than the President's request and $1 billion 
(34 percent) more than fiscal year 1999, reflecting the need to make 
prevention efforts even more of a national priority.
    The Coalition is very pleased that Congress provided $124 million 
in fiscal year 1999 to begin the process of re-building the nation's 
seriously eroded public health infrastructure in order to prepare for 
bioterrorism. That infrastructure includes epidemiologic surveillance 
and response capacity, laboratory capacity, and electronic 
communication capability at the local, state, and federal levels of 
government, but particularly local and state. The President has 
proposed continued infrastructure funding, but the needs are much 
greater than his budget request of $138 million ($118 m plus $20 
million in new monies provided to the Infectious Disease Program). The 
Coalition supports $263.5 million in funding in fiscal year 2000 to 
truly address the gaps in our public health system, and supports 
another $25 million to build a national electronic surveillance 
system--our first line of defense against a bioterrorist attack.
    Building public health infrastructure will not only help to prepare 
the nation for a bioterrorist attack involving agents, such as anthrax 
and smallpox, but will also reap rewards--every day--because it will be 
used--every day--to much more fully address food safety concerns, 
naturally occurring infectious diseases, environmental hazards, and 
even help us discern patterns of chronic disease and injury that will 
help us design effective prevention strategies.
    The Coalition is pleased that the President requests increased 
funds for polio and measles eradication, but does not provide any 
increases for the Section 317 childhood immunization program--funding 
for state and local infrastructure such as actual program delivery, 
outreach efforts, and registry implementation. During 1998, grants to 
states were cut by as much as 30 percent. These deep cuts may 
eventually cause a reversal in the successful immunization coverage 
rates for pre-school children of nearly 80 percent achieved in 1996.
    Sufficient funding is provided under the Coalition's recommendation 
to permit the National STD-Related Infertility Prevention Program to be 
extended from the current minority of states to the rest of the nation. 
This program provides chlamydia screening and treatment to women 
attending family planning and STD clinics, plus their partners, in four 
U.S. Public Health Service regions. The Coalition's recommendation 
would also support the increased funding for HIV/AIDS prevention which 
is clearly needed since the epidemic is still spreading in the United 
States. It also provides sufficient funding for the continued efforts 
of the TB program.
    For chronic disease programs, the Coalition's fiscal year 1900 
recommendation would permit the Breast and Cervical Cancer Program to 
be extended to every state. This program supports state health 
departments in building a national infrastructure to provide education, 
screening, follow-up and test quality assurance for breast and cervical 
cancer. Early detection and follow-up could prevent virtually all 
cervical cancer deaths and more than 30 percent of breast cancer 
deaths. Delayed detection also increases health care costs: from as low 
as $13,800 for cases detected early to as much as $84,000 for advanced 
cases. The Coalition's fiscal year 2000 recommendation for CDC would 
assist in extending the Diabetes Translation Program to every state. 
Diabetes is the seventh leading cause of death in the U.S. It is 
estimated that at least half of the 13,300 new cases of diabetes 
related end-stage renal disease could be prevented, saving 
approximately $240 million annually. Every state needs the cost-
effective services of the Diabetes Translation Program. The Coalition's 
recommendation would also permit increased funding for a multifaceted 
approach to cardiovascular disease (CVD) prevention designed to reduce 
the prevalence of risk behaviors. CVD is the leading killer in the U.S. 
for both men and women across all ethnic groups.
    The Coalition's fiscal year 2000 recommendation would permit $182 
million in funding for the Preventive Health/Health Services Block 
Grant. This level of funding is the minimum amount states have 
identified they need to meet the Healthy People 2000 goals they have 
committed to achieving. The PHHS Block Grant is the only flexible 
funding source for states to fill the gaps for specific health needs 
for their populations. The Coalition is very disappointed with the 
President's request for a $30 million cut in this vital, prevention 
program that many state health officials consider one of their highest 
funding priorities.

Health Resources and Services Administration

                        [In billions of dollars]

Fiscal year 1999 appropriation....................................   4.1
Fiscal year 2000 President's request..............................   4.2
CHF fiscal year 2000 recommendation...............................   4.9

    The Coalition for Health Funding recommends an overall funding 
level of $4.9 billion for HRSA in fiscal year 2000. This funding level 
is $700 million (17 percent) more than the President's request and $800 
million (19 percent) more than fiscal year 1999.
    This requested funding level would permit the health cluster of 
programs (i.e., community, migrant, homeless and public housing) to 
continue services to over 10 million low-income people in all 50 
states, as well as allow health centers to extend services to an 
additional 300,000 low-income, uninsured people.
    The President's fiscal year 2000 budget request zeros out funding 
for two of the health professions clusters created under the newly 
reauthorized Title VII and Title VIII Health Professions and Nursing 
Education programs. These clusters include primary care and general 
dentistry and public health and preventive medicine. It seems illogical 
for the President to take this action after signing legislation 
reauthorizing a newly streamlined program. The Coalition supports a 
funding level--$316 million--that will provide a small increase, not 
decrease, for both the Title VII Health Professions and Title VII, 
Nursing Education programs. These important programs help ensure that 
those living in medically underserved areas of our nation have access 
to health care services.
    The Coalition's fiscal year 2000 recommendation includes increased 
funding the Title V Maternal and Child Health Block Grant to ensure 
that the Child Health Insurance Program (CHIP) is fully utilized by 
those children and adolescents who are eligible by permitting critical 
outreach efforts. This increase would also enable expansion of cost-
effective programs for low-income working families such as those 
providing prenatal care, newborn screening, home visiting and well-
child care for over 18 million pregnant women, children, and children 
with disabilities.
    The Coalition's recommendation for fiscal year 2000 supports the 
President's $100 million increase for the Ryan White CARE Act titles 
and provides additional funding as well. The Ryan White CARE Act is the 
federal government's most significant HIV specific response to medical 
and support services. It is the federal portion of a partnership with 
communities who are challenged to find solutions to the difficult 
problems of health care access for people living with HIV. The CARE Act 
also provides for administration of the critical AIDS drug assistance 
programs which are providing new and promising therapies for HIV 
prevention. The AIDS Education and Training Centers provide essential 
training to health care providers nationwide in the evolving standard 
of care for people with AIDS.
    Finally, the Coalition's recommendation for fiscal year 2000 
supports the President's request for additional resources for Title X 
family planning services, which enable community-based clinics to 
provide basic reproductive health care to more than five million 
clients in over 4,000 clinics nationwide. Family planning services 
improve maternal and child health outcomes, lower the incidence of 
unintended pregnancy, and reduce the incidence of abortion. For every 
dollar spent on family planning services, more than $4 are saved in 
mandatory federal spending programs.

 Substance Abuse and Mental Health Services Administration

                        [In billions of dollars]

Fiscal year 1999 appropriation....................................   2.4
President's fiscal year 2000 request..............................   2.6
CHF fiscal year 2000 recommendation...............................   3.1

    The Coalition recommends that $3.1 billion be provided to the 
SAMSHA in fiscal year 2000. This is $500 million (19 percent) more than 
the President has requested and $700 million (29 percent) more than 
provided in fiscal year 1999. The Coalition is especially pleased that 
the President has requested a $70 million increase for the Community 
Mental Health Block Grant and hopes Congress will provide this level of 
funding. Prior to fiscal year 1999 when Congress provided a $13.4 
million increase, the Mental Health Block Grant had been level funded 
for seven years. This has resulted in erosion in funding to help 
communities address a serious and costly public health problem.

Agency for Health Care Policy and Research

                        [In millions of dollars]

Fiscal year 1999 appropriation....................................   171
President's fiscal year 2000 request..............................   206
CHF fiscal year 2000 recommendation...............................   225

    The Coalition is very pleased that the President has requested a 20 
percent increase for the Agency for Health Care Policy and Research 
(AHCPR) which would provide the agency with $206 million in funding for 
fiscal year 2000. The Coalition's fiscal year 2000 recommendation 
provides $225 million, which is $19 million more than the President's 
request. This level of funding will enable AHCPR to evaluate the 
progress made in the implementation of various Congressional 
initiatives, such as the children's health insurance program. It will 
permit the agency to expand the number of evidence-based practice 
centers, expand the number of centers for education and research on 
therapeutics and fund more grants on improving health care quality and 
outcomes.
    The Coalition appreciates the opportunity to provide the 
Subcommittee with its recommendations for fiscal year 2000 funding for 
health discretionary programs and looks forward to working with the 
Subcommittee in meeting the very difficult challenges ahead.

                                               COALITION FOR HEALTH FUNDING--DISCRETIONARY HEALTH PROGRAMS
                                                              [B.A. in millions of dollars]
--------------------------------------------------------------------------------------------------------------------------------------------------------
                                                                                    Fiscal years--
                                                                   ------------------------------------------------     Difference         Difference
                                                                                         2000                         President  CHF    fiscal year 2000
                                                                         1999         President's      2000 CHF      fiscal year 2000       CHF 2000
                                                                     appropriation      request     recommendation    recommendation     recommendation
--------------------------------------------------------------------------------------------------------------------------------------------------------
CDC...............................................................          $2,900          $3,100          $3,900       +$800 (+25%)     +$1,000 (+34%)
NIH...............................................................          15,652          15,972          18,000      +2,028 (+13%)      +2,300 (+15%)
HRSA..............................................................           4,108           4,200           4,900        +700 (+16%)        +792 (+19%)
SAMSHA............................................................           2,488           2,626           3,112        +486 (+18%)        +624 (+25%)
AHCPR.............................................................             171             206             225          +19 (+9%)         +54 (+31%)
FDA...............................................................           1,123           1,315           1,315  .................        +192 (+17%)
IHS...............................................................           2,242           2,412           2,621         +209 (+8%)        +379 (+16%)
OPHS..............................................................              85             148             153  .................  .................
                                                                   -------------------------------------------------------------------------------------
      Total public health.........................................          28,769          29,979          34,226      +4,247 (+14%)      +5,457 (+19%)
--------------------------------------------------------------------------------------------------------------------------------------------------------

                                 ______
                                 
      Prepared Statement of the Council of State and Territorial 
                            Epidemiologists
    The Council of State and Territorial Epidemiologists (CSTE), an 
association of 450 state and local public health epidemiologists, 
appreciates this opportunity to provide the Subcommittee on Labor, 
Health and Human Services, and Education Appropriations with its 
recommendations for funding in fiscal year 2000.
    The issue of epidemiologic capacity within state and local health 
agencies continues to be a principal concern for the organization. CSTE 
has had projects funded to specifically assess the epidemiologic 
capacity of broad program areas at the state level, such as chronic 
disease, and has concluded that the current method of categorical 
funding for infrastructure does not provide for the critical scientific 
services of epidemiologists. With this as an overarching concern--
flexibility at the state level--CSTE offers seven specific funding 
recommendations for fiscal year 2000.
  --First, CSTE strongly supports the President's fiscal year 2000 $65 
        million initiative to establish a national electronic public 
        health surveillance system. Of this amount, $40 million is 
        derived from funding the President has requested for 
        bioterrorism within the Centers for Disease Control and 
        Prevention (CDC) and $25 million is derived from new funding 
        for infectious diseases, food safety, and Hepatitis C 
        surveillance, also within CDC.
    Establishing a national, integrated, public health surveillance 
system is a goal CSTE has sought for several years. Epidemiologists 
working in public health agencies are responsible for monitoring trends 
in health and devising prevention programs that enable the entire 
community to be healthy. Public health assessment includes 
surveillance, epidemiologic studies, program monitoring of diseases, 
risk factors for disease, health hazards, and preventive actions. 
Surveillance enables public health officials to:
  --recognize outbreaks and intervene to prevent additional cases; this 
        is critical in any bioterrorism attack;
  --identify priority health problems/needs so that resources can be 
        appropriately allocated;
  --identify high risk communities and groups to effectively target 
        programs;
  --monitor the effectiveness of public health programs;
  --identify issues that need further scientific study to devise 
        preventive strategies.
    While these core surveillance activities are critical to the 
success of public health efforts, they have historically had no stable 
source of funding. CDC does provide funding support for a few well-
developed surveillance systems, but they are designed to meet the needs 
of that specific program and cannot be linked easily to other data 
systems to increase understanding about disease trends and health 
needs. In addition, the current fragmented, and underfunded network of 
surveillance systems often results in unnecessary duplication of 
effort. Much information from critical local reporters is frequently is 
provided via hand-written reports that must be re-entered into computer 
systems.
    CSTE has been working within CDC, for several years, to develop an 
over-arching model for integrated public health surveillance that 
encompasses development of standards and criteria from which all 
programmatic surveillance systems, at the federal, state, and local 
levels, would be built. The President's national electronic 
surveillance initiative would provide critical and timely support to 
significantly enhance this effort. It would also provide funding to 
electronically link key health data reporting sources, such as local 
clinical laboratories and emergency rooms.
    The establishment of a national electronic public health 
surveillance system would greatly enhance our nation's ability to 
quickly detect a bioterrorist attack, particularly one that is 
unannounced and involves a biologic agent with an incubation period of 
days or even weeks before clinical symptoms are evident. Speed in 
detecting an attack and identifying the terrorist agent in turn speeds 
response to victims and prevents death, spread of the disease, and 
economic disruption. A national electronic surveillance system would 
also be used--every day--to improve our ability to respond to public 
health problems such as food bourne illness, naturally occurring 
emerging infectious diseases, chronic diseases, occupational diseases 
and injuries, and environmental health hazards.
  --Second, CSTE recommends that support provided within the fiscal 
        year 1999 bioterrorism initiative for public health 
        infrastructure continue in fiscal year 2000 and be increased 
        from $121.7 million to $263.5 million. Within this total 
        amount, CSTE also recommends $15 million to increase state and 
        local epidemiologic capacity.
    This amount reflects CDC's professional judgement about what is 
really needed to enhance eroded public health infrastructure to prepare 
the nation. Much of the responsibility for addressing the health 
consequences of a terrorist attack involving biological or chemical 
agents resides with the state and local public health community. This 
includes detecting the threat; identifying the agent involved through 
laboratory analysis; assessing the extent of exposure, location of the 
agent source and evaluation of its continuing danger to the public; 
coordinating treatment and prevention measures with the medical care 
community including transport of victims to appropriate treatment 
settings, distribution of stockpiled vaccines, antibiotics and other 
treatment measures, and quarantine in the case of an infectious agent.
    It is very important that every state be prepared to address a 
bioterrorist attack, particularly because if it involves an unannounced 
attack using a biologic agent such as Anthrax or smallpox, two of the 
most likely agents, it will be days before the first cases begin 
appearing in physician offices, emergency rooms, and health clinics. By 
then, given our highly mobile society, victims are likely to be spread 
across many states.
    Currently, virtually no state is prepared for a serious 
bioterrorism attack. Most states do not have even one professional 
epidemiologist to conduct full-time active surveillance for unusual 
diseases and occurrences--a fundamental requisite for bioterrorism 
preparedness, and for every day public health crises. Only one-third of 
states have a Biosafety Level 3 laboratory, critical for safely 
identifying terrorist agents. Fully 40 percent of local health 
departments are not ``on-line'' and cannot communicate electronically 
with their own state health departments.
    The fiscal year 1999 bioterrorism funding provided to CDC, while 
extremely helpful in initiating preparedness, is only enough to support 
needed core epidemiologic and laboratory capacity in about half of the 
states. CDC has estimated that over $250 million is needed in fiscal 
year 2000 to adequately fund state and local public health 
infrastructure needs. CSTE, and many other core public health 
organizations believe the level must be at least $263.5 million (see 
attached table).
    This amount reflects CSTE's assessment that funding within the 
bioterrorism initiative for enhancing state and local epidemiologic 
capacity should be increased from $7 million to $15 million. At an 
average cost of $200,000 for each appropriated staffed epidemiolgical 
unit--including a full-time professional epidemiologist, computer, and 
statistical as well as support staff--$7 million will only support 35 
of these units to conduct active surveillance for unusual diseases and 
occurrences and determine and implement an appropriate response to 
minimize adverse outcomes. Active surveillance means educating key 
reporters, such as emergency physicians and nurses, about the clinical 
symptoms associated with terrorist agents and the need to provide 
appropriate samples for laboratory analysis. It also means monitoring, 
at least weekly, essential reporting sources such as clinical 
laboratories, large provider group practices, emergency rooms and vital 
statistics bureaus for unusual deaths.
    As already noted, only a handful of the largest, most resource rich 
states are able to support epidemiologic units that conduct the kind of 
active, generic surveillance and investigation needed to quickly detect 
an unannounced bioterrorism event involving a biologic agent. Even 
fewer of the identified 120 high risk cities have professional 
epidemiologists available that are not committed to other specific 
program needs. This means that $7 million to fund 35 appropriately 
staffed epidemiologic units cannot provide the kind of epidemiologic 
capacity required at both the state and local level for the nation to 
be prepared for a serious bioterrorism incident. CSTE recommends 
doubling the funding to $15 million in fiscal year 2000 which would 
provide for a minimum of 70 epidemiologic units. This would be enough 
to cover every state and a significant portion of the 120 highest risk 
cities.
    CSTE also strongly supports, within the attached public health 
infrastructure budget, the $52 million allotted in fiscal year 2000 for 
stockpiling vaccines and antibiotics for civilian use. CSTE also 
supports $30 million for NIH for vaccine and treatment research and $13 
million for FDA for rapid vaccine approval. Without treatment and 
prevention tools, public health and medical care professionals will 
have much less to offer victims of a bioterrorist attack.
    It is important to note, again, that increasing state epidemiologic 
capacity to be prepared for a bioterrorism threat means each state will 
also be better prepared for detecting and responding to naturally 
occurring infectious diseases, food bourne illness, environmental 
health hazards, chronic disease, occupational disease and injury.
  --Third, funding for the Behavioral Risk Factor Surveillance System 
        (BRFSS), a proven and valuable tool, should be increased by at 
        least 10 percent in fiscal year 2000.
    The Behavioral Risk Factor Surveillance System (BRFSS) is the only 
source of state level behavioral data. These data are the basis for 
many intervention programs, policy decisions and budget direction for 
chronic and other diseases for several state health departments. The 
BRFSS is currently in its 15th year of operation and is the largest 
continuous telephone survey in the world. It is flexible, timely and 
allows for state-to-state and state-to-nation comparisons of data. The 
BRFSS is able to address emerging health issues and fewer resources are 
required to run BRFSS than is required to run in-person interviews. The 
state-based telephone surveys are used to monitor health behaviors and 
knowledge regarding, for example, tobacco use, physical inactivity, 
poor diet, alcohol use, and lack of preventive services (i.e., 
screening and immunizations).
    In spite of all the data that BRFSS provides and the role these 
data play in the development of intervention programs and policy 
decisions, CDC funding for BRFSS is discretionary and averages $62,000 
per state. Although states support a majority of the costs of BRFSS 
data collection, few are able to analyze and translate the data into 
long-term disease prevention and control programs and policies due to a 
lack of resources. For these reasons, CSTE urges that for fiscal year 
2000 CDC provide a ten percent increase in funding for the BRFSS.
  --Fourth, CSTE recommends that $20 million be provided to CDC in 
        fiscal year 2000 to assist state and local health departments 
        develop asthma prevention and control programs.
    Asthma affects more than 14 million Americans, including five 
million children. The burden of asthma falls disproportionately on 
African-Americans and Hispanic populations and appears to be 
particularly severe in urban inner cities. In addition to the 
increasing proportion of the population with asthma, asthma morbidity 
and mortality are also increasing. Over 5,000 people died from asthma 
in 1995, and asthma accounts for nearly 500,000 hospitalizations each 
year. The health care costs associated with asthma exceeded $6 billion 
in 1990 and experts predict that those costs could climb to more than 
$14 billion by the year 2000.
    In spite of significant advances in the diagnosis and treatment of 
asthma, an improved understanding of the environmental triggers of 
asthma attacks, the health burden of asthma in the United States is 
increasing at epidemic proportions. Asthma control and prevention 
requires a long term, multi-faceted approach that includes patient 
education, surveillance, and control programs. These programs are not 
available due to a lack of resources at the state level. CSTE 
recommends that funds should be made available to CDC to develop asthma 
prevention and control programs at the state and local level.
    CDC's national strategy to assist States in developing prevention 
programs is to focus on:
  --promoting healthy home environments
  --translating science into public health practice
  --providing patient and community-level education and developing 
        prevention partnerships
  --defining the problem, the cause, effective prevention measures and 
        ways to accomplish prevention goals.
  --Fifth, CSTE recommends $45 million in fiscal year 2000 for CDC to 
        support needed epidemiologic capacity for states as they move 
        from AIDS case surveillance to HIV surveillance. CDC will soon 
        publish state guidelines for HIV case surveillance, but has 
        requested no additional funds in fiscal year 2000 despite a 100 
        percent increase in the time and effort required by state 
        epidemiologists.
    Currently, 31 states conduct HIV case surveillance. In anticipation 
of guidelines for conducting HIV case surveillance which will soon be 
published by CDC, most of the remaining states are moving to implement 
HIV reporting within the next year.
    CDC estimates that there are 200,000-250,000 people living with HIV 
(not AIDS) in non-HIV reporting states. These cases will be eligible to 
be reported to state and local health departments during the next one-
to-two years as HIV reporting is phased in by these states. During the 
same time period, all states will continue to report AIDS cases and 
deaths as well as newly diagnosed HIV infections. To accommodate the 
reporting of a very large volume of case reports during the next few 
years, in addition to the routine case reporting volume managed by 
state and local surveillance staff, additional resources are needed by 
the Surveillance and Statistics and Data Management Branches at CDC, 
and by state and local areas.
    Supplemental funds are needed to support three major activities 
that will enhance the current epidemiologic capacity for HIV 
surveillance at the state level. These are:
    (1) Implementation of HIV case surveillance for most states that do 
not currently conduct this kind of surveillance. This includes case 
finding and follow-up activities, which will require additional support 
to: establish laboratory-initiated reporting of over 200,000 current 
HIV cases using the existing HIV/AIDS Reporting System (HARS) 
Infrastructure; and develop statistical procedures and adjustments to 
improve the states' abilities to analyze and interpret HIV data.
    (2) Evaluate how well HIV/AIDS surveillance data meet established 
criteria for the performance of surveillance systems, including 
completeness, timeliness, and representativeness of the surveillance 
data.
    (3) Provide technical assistance on the development of new 
surveillance methods to areas that plan to implement HIV case reporting 
using coded (non-name) identifiers.
    (4) In addition, under the new CDC guidelines, states that are 
already conducing HIV surveillance will need to add reporting of viral 
load tests for individuals identified as HIV positive as well as 
continue to conduct and report antibody testing to identify those who 
are HIV positive. This will add considerably to the workload of state 
health departments that are already conducting HIV reporting.
  --Sixth, CSTE supports restoring the $30 million cut to the 
        Preventive Health and Health Services Block Grant in the 
        President's fiscal year 2000 budget and increasing the program 
        above the fiscal year 1999 level of $150 million. States have 
        estimated that $182 million is needed to assist them in meeting 
        identified Healthy People 2000 goals.
    The Preventive Health and Health Services Block Grant (PHHS) is the 
only source of flexible public health funding for many states to 
address the Healthy People 2000 goals they have identified as important 
for their population. Categorical funding does not always meet the 
needs of individual states and can hamper efforts to address actual 
existing health problems. The PHHS Block Grant fills in the gaps left 
by categorical programs.
    States are accountable to CDC on how they spend block grant 
funding. Examples of how states use funding are:
  --to prevent cardiovascular diseases through ``heart healthy'' 
        community programs;
  --to control communicable diseases through funding core state and 
        local staff positions;
  --to prevent injuries through the encouragement of bicycle helmet 
        use;
  --to provide funding for state or community emergency medical 
        services.
  --Seventh, CSTE supports $705 million in fiscal year 2000 for the 
        Maternal and Child Health Block Grant administered by the 
        Health Resources and Services Administration (HRSA).
    The Maternal and Child Health Block Grant (MCH) provides a safety 
net of medical care services for women and children with special needs 
who cannot afford private health insurance and are not eligible for 
Medicaid. State MCH program plan and implement the following community 
based activities:
  --prenatal care (every dollar invested yields three dollars saved);
  --targeted efforts to prevent low birth weight babies, a costly 
        condition which often results in lifetime disability;
  --childhood immunizations;
  --newborn screening;
  --early intervention for children with chronic diseases and 
        disabilities.
    In 1996, the MCH program provided care to over 17 million infants, 
children and adolescents; 1.7 million pregnant women; and approximately 
900,000 children with special health care needs. Over the past decade, 
we have seen an increasing demand for the services of MCH programs due 
to increasing numbers of uninsured and underinsured women and children. 
MCH programs are also experiencing increased demand due to the 
enactment of the Children's Health Insurance Program (CHIP) as they are 
an important link in the effort to locate, assess and refer eligible 
children for expanded Medicaid coverage under the program.
    CSTE appreciates the opportunity to provide the Subcommittee with 
its funding recommendations for fiscal year 2000. The seven priority 
areas described are not single year concerns, but reflect on-going 
recognition of public health infrastructure deficits, areas of great 
potential scientific opportunity and recognition of changing health 
care needs.
                                 ______
                                 
 Prepared Statement of Tom Van Coverden, CEO, National Association of 
                        Community Health Centers
    On behalf of the National Association of Community Health Centers, 
I am pleased to provide the Subcommittee with testimony in support of 
the urgent need to increase funding by $100 million for the 
Consolidated Health Centers Program (i.e., community, migrant, 
homeless, and public housing health centers) to $1.026 billion for 
fiscal year 2000. Health centers can provide an entire year of primary 
and preventive care to an uninsured patient for an average of just $280 
in federal support. The $100 million we seek for next year will allow 
health centers to care for an additional 350,000 uninsured patients. 
Since health centers have seen an additional 1 million uninsured 
patients over the past three years (about 350,000 each year), the 
increase would provide the minimum needed to match the flow of new 
uninsured patients seeking care.
    I would like to express our deepest appreciation to the 
Subcommittee for its support of the consolidated health centers 
program. Under the leadership of Chairman Specter, appropriations for 
the program increased by $100 million last year--during a time when the 
Subcommittee had to face many difficult choices among worthwhile 
programs. Over 500 health centers received their first base funding 
increase in eight years. The $100 million increase this committee 
provided for health centers last year is an important step in 
bolstering the ability of Lake County and other existing health centers 
to extend care to the many new uninsured families now seeking services, 
and to develop new health center sites in needy communities that are 
currently unserved.
    However, much more work needs to be done. During testimony to the 
House Labor, HHS, and Education Appropriations Subcommittee earlier 
this year, the Health Resources and Services Administrator, Dr. Claude 
Earl Fox stated that, in his professional judgment, health centers need 
a $264 million increase in fiscal year 2000 to maintain operations and 
meet the growing demands for services. The appropriations increase for 
fiscal year 1999 allows the Bureau of Primary Health Care to provide 
only 25 percent of the amount needed to adequately fund existing health 
centers which are currently underfunded for the number of uninsured 
they are serving. And, it will only permit funding for 50 of the more 
than 550 requests for a new health center submitted by communities that 
do not have one. Dr. Marilyn Gaston, Director of the Bureau of Primary 
Care, testified before the same Subcommittee that 45 percent of health 
centers have been identified as financially at risk: between 5 and 7 
percent are close to bankruptcy, and another 5 to 10 percent are in 
severe financial trouble. Already between 60 and 70 health center 
delivery sites have closed their doors, leaving patients without health 
services.
    Two converging forces in the health system are pressing health 
centers across the nation hard. First is the growing number of 
uninsured and underinsured Americans. Forty-three million Americans 
lack any health coverage whatsoever and the vast majority cannot afford 
to pay for needed care themselves. The number of uninsured Americans is 
growing rapidly, at a rate of more than 100,000 per month. 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. Many 
of these uninsured individuals must rely on health centers, because we 
are among the precious few health care providers who are obligated to 
make our services affordable for those families by discounting our 
charges according to income.
    Second, health centers are seeing increasing numbers of uninsured 
patients previously seen by other providers. The rapidly expanding use 
of managed care has triggered substantial cut-backs in the amount of 
free and reduced price care that is provided by private physicians and 
teaching hospitals. A recent study published in the Journal of the 
American Medical Association quantified managed care's dramatic impact 
on private physicians' care for the uninsured. It found that:
  --Physicians who derive most of their practice revenue from managed 
        care provide 40 percent less free or reduced price care. 
        Greater financial pressures by third-party payers limit their 
        ability to cross-subsidize care for the medically indigent.
  --In markets with high managed care penetration, physicians provide 
        less free or reduced price care regardless of their own level 
        of involvement in managed care.
    As cost pressures result in less free or reduced price care by 
private physicians, the burden of providing such care shifts onto 
health centers. Continuing increases in the number of uninsured persons 
we serve are severely straining our limited resources. While we are 
grateful to the Subcommittee for its continuing support, funding for 
the health centers program has not kept pace with the growing number of 
uninsured seeking care at health centers. If these trends were not 
challenging enough in their own right, the health center safety net is 
also endangered by a provision in the Balanced Budget Act which takes 
effect on October 1. This provision phases out the requirement that 
health centers be reimbursed on a reasonable cost basis for providing 
health care services to Medicaid beneficiaries. Enacted by Congress in 
1990, the reasonable cost payment system brought an end to a period 
when underpayments from Medicaid forced us to siphon funds away from 
Federal Public Health Service grants we receive to support care for the 
uninsured. If the phase out of this payment system is not reversed or 
changed, it is estimated that health centers could lose approximately 
$50 million in Medicaid revenues in fiscal year 2000 alone. Every 
dollar of lost Medicaid revenue must be subsidized by these grant 
funds. As a result, this one-year $50 million loss will cost 178,500 
uninsured people access to health center services. These financial 
losses will escalate to approximately $100 million (resulting in the 
loss of care for 357,000 uninsured) in fiscal year 2001, $150 million 
(536,000 uninsured) in fiscal year 2002, $300 million (1.1 million 
uninsured) in fiscal year 2003, and as much as $500 million (1.79 
million uninsured) in fiscal year 2004.
    As not-for-profit health care providers, all revenues that health 
centers collect are reinvested back into the health center to expand 
service sites, health care services, or hours of operation for the 
communities they serve. Likewise, all revenues that are lost by health 
centers force them to close delivery sites, limit needed health care 
services, or restrict the hours that health centers are available to 
the patients that require their services. This phase-out will devastate 
the good work this subcommittee has done to support health centers, 
especially over the last three years. The strain on the health center 
safety net will affect millions. 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 and seasonal farm workers, persons with AIDS, persons 
with drug and alcohol problems, homeless persons and families, the 
frail elderly and other high-risk groups. Health centers have special 
expertise in meeting the unique needs of these most vulnerable 
populations and are often the only local source of non-hospital, 
community-based primary care for them. Their patients include:
  --Children: Health centers serve 1 of every 6 low-income children 
        (4.5 million children), including 1 in every 5 low-income 
        uninsured children (1.3 million).
  --Pregnant Women: In 1997, 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.
  --Low-Income: Health centers care for 1 of every 8 low-income 
        Americans.
  --Uninsured: 1 in every 10 uninsured persons in the United States 
        uses a health center (4.2 million).
  --Minorities: Almost 7 million minority persons are health center 
        patients.
  --Rural Residents: Health centers are the family doctor for 1 in 12 
        rural Americans.
  --Farmworkers: Health centers provide services to over one-half 
        million farmworkers.
  --Homeless: Over 430,000 homeless individuals receive care from 
        health centers.
    Nationwide, there are 981 community, migrant, homeless and public 
housing centers and FQHC look-alikes serving over 2,500 communities 
across America. Together, these health centers care for over 10 million 
children and adults in each 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. Each local health 
center is governed by volunteer members of the community who have an 
interest and take responsibility to ensure that responsive and 
affordable health care is provided to all who need it. Patients are 
charged on a sliding fee scale to ensure that income or lack of 
insurance is not a barrier to care. Federal grants subsidize the cost 
of care provided to the uninsured and the cost of key services (such as 
translation and outreach) not covered by Medicare, Medicaid, or private 
insurance--services which make the care provided by health centers 
cost-effective and responsive.
    Many studies have concluded that health centers, in the process of 
providing primary care to medically uninsured and underserved 
communities, achieve real and significant cost savings. Through fewer 
hospital admissions and less frequent use of costly emergency care for 
routine services, health centers save the American health care system 
billions annually. Few government programs have made as significant a 
contribution to low-income families as cost-effectively, or in high 
quality a manner as health centers.
    Investing in health centers makes sense:
  --Increases Access to Health Care: Every $100 million invested in 
        health centers brings another $200 million in other resources 
        to communities nationwide. This creates capacity for health 
        services for 1 million people (including 350,000 uninsured 
        persons), enabling them to get the care they need.
  --Proven Track Record: Health centers are located in the communities 
        where many uninsured people and those with poor health status 
        live and work. They have a 30-year track record of controlling 
        costs, providing access to quality care, retaining health 
        professionals where they are most needed, and empowering 
        communities to develop long-range solutions to their health 
        needs.
  --Cost-Effective, Quality Care: Health centers provide primary and 
        preventive care for less than 76 cents a day for each person 
        served (about $280 annually). They are required by law to meet 
        strict quality, financial, and administrative standards.
  --Saves Health Care Dollars: Health centers save community resources. 
        Every grant dollar invested in health centers saves $7 for 
        Medicare, Medicaid, and private insurance: $6 through lower use 
        of specialty and inpatient care, and $1 from reduced use of 
        costly hospital emergency rooms.
    The National Association of Community Health Centers believes 
additional federal investment is needed to ensure the availability of 
primary and preventive health care in medically underserved 
communities. Priority should be given to stabilizing the existing 
health center safety net and expansion of existing health centers to 
serve the needs of communities without access to primary and preventive 
care. Health centers have been faced with the challenge of caring for 
an ever-increasing number of people seeking care in an era of stagnant 
or declining resources and shortages of primary care health 
professionals. As the number of uninsured persons increases, 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 maintain and build on it.
    As you consider the fiscal year 2000 appropriations, we request 
that you consider for the Consolidated Health Center Program (i.e., 
community, migrant, homeless and public housing): $1.026 billion, a 
$100 million increase above current funding levels. We know that you 
and members of the Subcommittee have a very difficult task ahead of you 
this year because of the strict limits on available funds. We have 
characterized our recommended funding levels as an investment in a 
proven system of care to foster wellness and prevention. If funded 
adequately, the continued 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 that past 30 years 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 
level.
                                 ______
                                 
 Prepared Statement of the Philadelphia College of Osteopathic Medicine
    Mr. Chairman, I appreciate the opportunity to place this brief 
statement in the record in support of the request made by the 
Philadelphia College of Osteopathic Medicine (PCOM). As you may know, 
PCOM is the largest osteopathic medical school in the country with a 
tradition that emphasizes medical training in primary health care and 
family practice.
    Throughout its 100-year history, PCOM has sought to encourage its 
graduates to practice in low-income urban and rural communities. In 
fact, a considerable base of training for medical students is built 
around practical training regimens in urban clinics which PCOM operates 
in the Philadelphia area, and in affiliate training hospitals 
throughout Pennsylvania. In turn this approach, with its early clinical 
exposure, gives a balance in medical education between the classroom, 
the clinic and the community.
    As the Committee is aware, the healthcare delivery system of the 
past was heavily weighted toward large urban medical centers with high 
technology bases. While this format certainly has its place, the focus 
has shifted to place the primary physician in the forefront, 
particularly in light of healthcare reforms and the emergence of 
managed care. In that context, the new training mandate is to train the 
generalist, and to focus more emphasis on areas of medical need--
namely, preventative care and community medicine in low-income rural 
and urban areas.
    Accompanying the shift in focus within the American healthcare 
system is a change noted in the 1995 Pew Health Professions Commission 
Study. This document indicated a massive oversupply of specialists and, 
thus, a need for more primary care physicians to balance the healthcare 
equation. Not only did the Pew Study recommend a 50/50 balance between 
specialized medicine and primary care, but it stressed early exposure 
to clinical practice settings for medical students, and overall care 
for the health of a community.
    The Philadelphia College of Osteopathic Medicine believes that 
physicians must understand those they serve, and must create ways 
within a community to encourage those who have not sought healthcare in 
the past. To implement this philosophy, PCOM introduces students, early 
on, to a balance between the classroom, the community and the clinical 
experience, as I noted earlier. In short, PCOM's philosophy is in line 
with the Pew Study.
    As the focus on primary care has become more pronounced, the number 
of osteopathic physicians has increased some 50-percent. In fact, 
osteopathic medicine has become one of the fastest growing health 
professions in the United States. This growth is, in large part, a 
reflection of the many benefits available to the patient base served by 
osteopathic physicians and the demand for primary care, in general.
    In recognition of the increased demand for healthcare provided by 
osteopathic physicians, and as part of a continuing effort to improve 
physician training in the areas of preventative and family healthcare 
delivery, PCOM has commenced a dual enhancement initiative: one, PCOM 
has invested heavily in a renovation program for the four clinics it 
operates (3 urban and 1 rural); two, PCOM has underway, the 
establishment of an Urban-Rural Medical Exchange Network to interlink 
its clinics, the main campus and the fourteen affiliate training 
hospitals throughout Pennsylvania.
    In the clinic renovation program, the four clinics will be (and are 
being) renovated to reflect the type of clinical environment which 
should be available to those who have been medically underserved over 
the years. Given the increasing demand for healthcare services in each 
of those clinics, it is necessary to expand and update each so that 
each can remain within accepted medical standards for healthcare 
delivery, and within the guidelines of the Federal government's focus 
on improved healthcare in underserved areas.
    In the Urban-Rural Medical Exchange Network initiative, the focus 
is on outreach to the underserved communities in which the four PCOM 
clinics operate, online resources to students training in the fourteen 
affiliate hospitals around Pennsylvania, and electronic imaging, 
diagnostic and lecture exchanges between practicing physicians and 
students. Apart from the medical education advantages of the Exchange 
Network, this initiative will enhance patient care by providing real-
time patient data exchanges between clinics and affiliate hospitals--a 
plus for many underserved areas.
    Significant funds have already been advanced toward both projects 
by PCOM. An ongoing capital campaign will raise yet more for this 
multi-phase program. However, at this stage, it is important that PCOM 
seek $3 million in Federal grant assistance for the entire initiative 
to continue forward at a smooth pace at this juncture.
    Mr. Chairman, as you know, there are various precedents for this 
type of effort within the HRSA section of the bill. Accordingly, we ask 
that you give serious consideration to this request as it is a 
worthwhile one which stands to benefit thousands of urban and rural 
Pennsylvania residents who are among the population we call medically-
underserved.
    Thank you for your consideration.
                                 ______
                                 
   Prepared Statement of Hon. Pedro Rossello, Governor of Puerto Rico
    Both prior to and throughout the six years during which I have had 
the privilege of serving the nearly 3.9-million United States citizens 
of Puerto Rico as their Governor, health care has been one of my top 
priorities. Upon my inauguration in January 1993, Puerto Rico's health 
care system was plagued with chronic service problems and a bloated 
bureaucracy. Costs were skyrocketing, yet the quality of care remained 
woefully deficient. When uninsured economically-disadvantaged citizens 
required medical attention, they had only one alternative: to visit a 
government-operated clinic where long waits and substandard care were 
the rule, not the exception.
    In keeping with a promise I had made as a candidate, my 
administration began immediately to design, enact and implement an 
innovative program of health-care reform; today, that program is close 
to reaching its goal of ensuring that every resident of Puerto Rico has 
access to quality health care through a system of private insurance, 
while simultaneously optimizing the utilization of our territory's 
health-care resources.
    The ongoing reform of Puerto Rico's health-care system encompasses 
two parallel processes. First, through a competitive bidding process, 
public health-care facilities (such as clinics and hospitals) are being 
privatized in order to bring about service-delivery improvements. 
Second, again through competitive bidding, private firms are being 
contracted to insure the medically-indigent population.
    With respect to the latter initiative, our government is purchasing 
insurance from private carriers to provide coverage for those who 
cannot afford to purchase it themselves. The insurance company bears 
the associated risks. Fees are determined by an individual's ability to 
pay. Thus, under this new system, the government is being converted 
into a facilitator--rather than a direct provider--of health-care 
services.
    Now protected by private health insurance are more than 1.5-million 
Puerto Rico residents who formerly were categorized as medically 
indigent. The quality of care has dramatically improved; and the range 
of services being offered by clinics to attract patients (for example: 
extended operating hours, prenatal care, drug treatment programs and 
dental attention) continues to expand.
    Puerto Rico has entered the vanguard of the U.S. health-care-reform 
movement because we put into practice a basic principle that is the 
goal of every health advocate: Health care should be the right of all, 
not the privilege of a few.
    We are focusing close attention on ensuring that the highest 
possible percentage of each health-care dollar is specifically invested 
in serving the patient population: Administrative matters now consume 
less than 8 percent of Puerto Rico's health-care budget. Meanwhile:
  --the number of new cases of Acquired Immune-Deficiency Syndrome 
        [AIDS] has plummeted by 70 percent since 1993;
  --a massive infant-vaccination program has been so successful that we 
        have repeatedly been ranked first in the entire United States, 
        with participation rates as high as 88 percent (compared with 
        38 percent in 1992);
  --from a level of 13.4 deaths per 1,000 live births in 1993, the 
        infant-mortality rate has been brought down to 9.3; and
  --the life-expectancy rate has been steadily rising, to its current 
        level of more than 74 years.
    Independent surveys have determined that the beneficiaries of our 
health reform embrace it enthusiastically: Majorities that range from 
90 percent to as high as 96 percent of the participants consistently 
affirm that they never want to go back to the old system. They enjoy 
their empowerment. They love getting the bureaucracy off their backs.
    Six years ago, private health insurance and the federal Medicare 
insurance program combined to protect 55 percent of the Puerto Rican 
people; today, fully 95 percent of our people enjoy such protection; 
and before the end of next year, Puerto Rico will have established 
health care as a fundamental right in our society. Almost nowhere else 
has this been done, but it is being done in Puerto Rico.
    Still, that comprehensive health-care reform initiative cannot 
possibly achieve its full potential until Congress has eliminated the 
existing inequities we confront with respect to such national programs 
as Medicaid, Medicare and Children's Health Insurance. This statement 
addresses one of those national ventures: the Children's Health 
Insurance Program [CHIP]. Created by the Balanced Budget Act of 1997, 
CHIP empowers the states to initiate and expand health-insurance 
coverage for minors. Under CHIP, the aggregate funding for U.S. 
territories was originally fixed at just 0.25 percent of the total 
program funding, and Puerto Rico's allotment was set at $9.8-million. 
So minimal was this federal appropriation that it was insufficient to 
underwrite even as much as $32 in health-care-insurance coverage 
annually for each eligible child in Puerto Rico. By contrast, eligible 
children residing in the 50 states receive an average of $588 apiece in 
annual coverage under CHIP.
    In an effort to compensate for this disparity, Congress included an 
additional CHIP allotment of $32-million for the territories in the 
Omnibus Consolidated and Emergency Supplemental Appropriations Act of 
1999 [PL 105-277]. However, this additional funding was assigned for 
fiscal year 1999 only; consequently, in fiscal year 2000 and every year 
thereafter, funding for Puerto Rico would revert to its previous 
statutory limit of $9.8-million.
    Pursuant to President Clinton's pledge that more-equitable funding 
would be provided for children's health care in U.S. territories, the 
Administration's fiscal year 2000 Budget Request contains a CHIP 
funding increase of $144-million for Puerto Rico and the other 
territories; those funds are earmarked for distribution over a five-
year period. Although this enhanced allocation would fall short of 
granting health-care-insurance parity to Puerto Rico's needy children, 
it unquestionably constitutes a positive step in that direction.
    Accordingly, I respectfully urge the members of this Subcommittee 
to demonstrate the commitment of Congress to the cause of equal social 
justice for hundreds of thousands of our Nation's youngest citizens in 
the critical field of health-care by supporting that proposal and 
approving at least the sum of $34.2-million that is required for fiscal 
year 2000.
    This additional funding is essential if Puerto Rico and the other 
territories are to protect their eligible children via adequate health-
care insurance coverage. In the final analysis, after all, America's 
future depends upon healthy citizens; and a child denied health-care 
equality in a territory today may tomorrow become a public-health 
burden as an adult patient residing in one of the states. Thus, from 
even the narrowest of perspectives, it would be shortsighted--as well 
as unfair--to leave youngsters in the territories inadequately covered 
under CHIP.
    I thank you sincerely for your consideration of this Statement.
                                 ______
                                 
   Prepared Statement of Robert Fish, President, Santa Rosa Memorial 
                        Hospital, Santa Rosa, CA
    Mr. Chairman, and Members of the Subcommittee, thank you for the 
opportunity to submit testimony to the hearing record regarding the 
proposed Northern California Telemedicine Network. This network will 
consist of a hub located at Santa Rosa Memorial Hospital in Santa Rosa, 
California and will serve over 10 hospitals, health centers and clinics 
in Sonoma, Napa, Mendocino, and Humbolt counties.
    Santa Rosa Memorial Hospital is moving aggressively to build a 
permanent telemedicine infrastructure to expand health care services, 
as well as education and prevention programs into these currently 
underserved areas. The core of this initiative will be located at the 
Santa Rosa Memorial Hospital Emergency Department that will serve as 
the ``hub,'' for this regional telemedicine network, providing access 
to primary, specialty and trauma care services.
    The Northern California Telemedicine Network will work with other 
institutions to develop twelve ``spoke'' sites throughout northern 
California during the initial years of the project including:
  --St. Joseph's Hospital, Eureka, California
  --Redwood Memorial Hospital, Fortuna, California
  --Mendocino Coast District Hospital
  --Petaluma Valley Hospital
  --Rohnert Park Healthcare Center
  --Redwood Coast Medical Services
  --Anderson Valley Health Clinic
  --Mendocino Coast Clinics
  --Potter valley Community Health Center
  --Long Valley Health and Dental Center
  --Mendocino Community Health Clinic
    The growth of this network will enable a telemedicine program to 
achieve maximum cost effectiveness by serving multiple spoke sites from 
a single hub. In addition, it is anticipated that the spoke sites will 
develop some synergies as a result of their telemedicine technology 
that will allow them to communicate more effectively with each other 
and, importantly, with the communities most urgently in need of those 
services through the use of telemedicine technologies.
    As I am sure that you are aware, rural America is experiencing a 
shortage of primary care physicians and specialist care providers. 
Primary care physicians are the keys to meeting the basic health care 
needs of patients in these areas because they are able to provide a 
wide variety of basic health services and identify medical problems 
needing further attention. Twenty-nine percent of rural residents live 
in Health Professional Shortage Areas (HPSA) compared to only nine 
percent of urban residents. Statistics from the Office of Statewide 
Health Planning and Development in California show that in northern 
California alone, all of Del Norte county and portions of Sonoma, 
Mendocino, Lake and Humboldt Counties are all experiencing Primary Care 
Health Professional Shortages.
    People living in remote areas struggle to access timely, quality 
medical care. Residents of these areas often have substandard access to 
specialty health care, primarily because specialist physicians are more 
likely to be located in areas of concentrated population. Because of 
innovations in computing and telecommunications technology, many 
elements of medical practice can be accomplished when the patient and 
health care provider are geographically separated. This separation 
could be as small as across town, across a state, or even across the 
world.
    Many areas in California, specifically Northern California are 
medically underserved areas. The United States Department of Health and 
Human Services has classified portions of Sonoma, Mendocino, Humboldt, 
Del Norte counties and all of Lake county as federally designated 
medically underserved areas. Access to medical care, especially 
specialty and trauma care is limited and episodic at best.
    Often, these communities have been medically underserved due to the 
concentration of specialty care and health education in urban and 
suburban neighborhoods. The use of Telemedicine serves to provide 
California's underserved patients with the medical services they need. 
Instead of the patient being forced to travel long distances to reach a 
specialized provider, the patient, instead, could see their local 
provider and receive specialized care via telemedicine saving time, 
improving safety and providing a much needed service for the patient. 
Additionally, the need for emergency transport of patients would be 
significantly decreased due to the ability of telemedicine to assist in 
the diagnosis of a trauma patient on site. California could 
significantly benefit from the development of telemedicine due to its 
large geographical area with a population located in big cities, 
smaller towns and isolated rural regions.
    Telemedicine has the potential to improve the delivery of health 
care in America by bringing a wider range of services to underserved 
communities and individuals in both urban and rural areas. In addition, 
telemedicine can help attract and retain health professionals in rural 
areas by providing ongoing training and collaboration with other health 
professionals.
    As you know, the Health Resources and Service Administration, a 
branch of the U.S. Department of Health and Human Services, recently 
created the Office for the Advancement of Telehealth with the mission 
of assisting to set up federal telemedicine policy, funding 
telemedicine demonstrations, providing technical assistance to grantees 
and local and state health officials and producing educational tools to 
promote the use of telemedicine. We feel that Santa Rosa Memorial 
Hospital's Northern California Telemedicine Proposal would be a worthy 
demonstration project to be funded through this newly created resource.
    Mr. Chairman, we believe that Santa Rosa Memorial Hospital proposed 
Northern California Telemedicine Network will create a national model 
for providing access to primary, specialty and trauma care services for 
remote and at-risk populations. Our desire is to provide a much needed 
service--primary and specialty care--to these underserved communities. 
Therefore, Santa Rosa Memorial Hospital is federal support in fiscal 
year 2000 for the implementation of its Northern California 
Telemedicine Network. The federal investment will enhance our nation's 
commitment to protecting the health of our citizens. Your support for 
this effort will improve the quality of health care and contribute to 
the saving of lives for thousands of individuals in Northern 
California.
    Thank you for your interest.
                                 ______
                                 
 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 and public health. 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, the 
Agency for Health Care Policy and Research, 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 and 
research, the amounts that we recommend be targeted to prevention are 
small indeed.
     training in preventive medicine and public health--$50 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 768 (formerly Sections 763), 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 (GME) funds have been largely unavailable to these 
programs because they are based not in hospitals but in community 
outpatient and public health settings. And even with the GME changes 
made in the Balanced Budget Act (i.e. payment to non-hospital based 
sites), preventive medicine residencies are still not able to receive 
reimbursement because preventive medicine programs derive little or no 
revenue from one-on-one patient care--as a result, this common source 
of funds for physician training 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 1070 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. We urge your 
support of all the public health training programs included within 
Section 105, otherwise known as the Public Health Workforce Cluster, 
including: Public Health Training Centers (Section 766, formerly known 
as Public Health Special Projects), Public Health Traineeships (Section 
767), and Preventive Medicine Residencies/Dental Public Health (Section 
768). An appropriation of $50 million for Sections 766, 767, and 768 
will allow for the continuation of efforts to build the nation's cadre 
of prevention professionals in fiscal year 2000. Finally, ACPM and ATPM 
support the Health Professions and Nursing Education Coalition's 
(HPNEC) recommendation of $316 million for all of the health 
professions education programs funded under Titles VII and VIII of the 
Public Health Service Act.
        centers for disease control and prevention--$3.9 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 $3.9 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 shortsightedness. 
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.
        agency for health care policy and research--$225 million
    The Agency for Health Care Policy and Research (AHCPR) is 
responsible for conducting groundbreaking research concerning the cost-
effectiveness of health care services and has served as the focal point 
for coordinating departmental activities in prevention as well as 
innovative public-private partnerships. AHCPR provides guidance and 
prototype materials to health practitioners and patients through the 
Put Prevention Into Practice project. It has also been actively 
involved with assisting the U.S. Preventive Services Task Force in its 
revision of the U.S. Guide to Clinical Preventive Services, the 
established reference source for clinicians, purchasers of health care, 
and students, trainees and researchers needing evidence-based 
recommendations on preventive services. We urge your support of $225 
million for these and other projects implemented by AHCPR.
    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 Healthy People 2000, and this year launched the 
Healthy People 2010 initiative, the national prevention strategy used 
by health agencies across the nation to set measurable objectives for 
health improvement. 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 National Rural Health Association
    The National Rural Health Association (NRHA) thanks Chairman 
Specter and members of the Subcommittee for the opportunity to submit 
for the record the NRHA's fiscal year 2000 funding requests for 
programs important to our nation's rural health care delivery system. 
We believe we can offer you an insightful look at the unique health 
care needs of rural and frontier Americans.
    The NRHA is a national nonprofit membership organization that 
provides leadership on rural health issues. Through discussion and 
exploration, the NRHA works to create a clear national understanding of 
rural health care, its needs, and effective ways to meet them. The 
association's mission is to improve the health of rural Americans and 
to provide leadership on rural health issues through grassroots 
advocacy, communications, education and research. As you are well 
aware, rural areas are unique. They differ from urban communities in 
their geography, population mix and density, economics, lifestyle, 
values and social organization. Rural people and communities require 
programs that respond to their individual characteristics and needs.
    Membership of the NRHA is a diverse collection of individuals and 
organizations, all of whom share the common bond of an interest in 
rural health. Individual members come from all disciplines and include 
hospital and rural health clinic administrators, physicians, nurses, 
dentists, non-physician providers, health planners, researchers and 
educators, state offices of rural health and policy-makers. 
Organization and supporting members include hospitals, community and 
migrant health centers, state health departments and university 
programs.
    First, we would like to express to the Subcommittee the critical 
need for increased funding for the National Health Service Corps 
(NHSC). The NRHA strongly supports a $40 million increase for the 
program. In fact, the Corps is our membership's number one funding 
priority for fiscal year 2000. Of concern to the NRHA is the fact that 
the NHSC has received level funding the past three fiscal cycles.
    The NHSC plays an important role in maintaining the health care 
safety net by placing primary care providers in both rural and inner-
city underserved communities. Currently, 2,400 NHSC clinicians, 
including physicians, dentists, nurse practitioners, physician 
assistants, certified nurse midwives and mental and behavioral health 
professionals, provide primary care serves to 4.6 million Americans 
living in rural and inner-city areas that would otherwise go unserved.
    Many of our members are former NHSC clinicians and can personally 
attest to the value of the NHSC in increasing access to quality primary 
health care services to our nation's underserved rural populations. Dr. 
Tom Dean, an NRHA past-president and former NHSC clinician who served 
in rural Kentucky, has been building a practice in South Dakota for 
over 20 years and now has a professional staff of six--three of which 
are NHSC clinicians. In recent testimony before the House Labor, HHS 
and Education Appropriations Subcommittee, Dr. Dean stated, ``I can 
share with you frankly and without exaggeration that if it were not for 
the support of the NHSC program, my community's primary care practice 
would not survive, consequently leaving numerous residents of rural 
South Dakota without access to vital primary health care services. As a 
direct result of the NHSC, families in my community enjoy the benefits 
of a stable health care practice.''
    However, it is important for the members of the Subcommittee to 
keep in mind that the 4.6 million rural and inner-city residents 
benefiting from the work of NHSC clinicians represents only 20 percent 
of our country's total underserved population. It is estimated that 
over 19,700 additional clinicians are needed to eliminate the 2,800 
Health Professional Shortage Areas (HPSAs), 1,116 dental HPSAs and 629 
mental health HPSAs currently designated across our nation. Despite the 
common belief that the United States has more physicians than it truly 
needs, it is quite obvious from these statistics and the personal 
experience of NRHA members that this is not the case. The reality is 
that there is a maldistribution of primary health care providers in our 
country. The number of American families without access to necessary 
primary health care will continue to grow, unless the NHSC program, and 
the financial incentives it provides, is able to continue to meet the 
needs of our underserved communities.
    As a result of recurrent level funding, the NHSC is estimating that 
it will be able to fill only 60 percent of the approximately 1,400 
requests for primary care clinicians from underserved communities 
expected in 1999. A $40 million increase would provide the program with 
enough resources to place an additional 427 clinicians in underserved 
areas. Funding for this program also supports the important work of the 
fifty state offices of rural health.
    A program instrumental to the survival of our nation's most 
vulnerable small, rural hospitals is the Medicare Rural Hospital 
Flexibility program authorized as part of the Balanced Budget Act of 
1997 (BBA). The BBA established a nationwide limited-service hospital 
program to improve access to essential health care services through the 
establishment of Critical Access Hospitals (CAHs) and rural health 
networks. States are provided grants to collaborate with community 
health care leaders in developing state rural health plans and 
designating CAHs. In addition to implementation grants made available 
to states, CAHs receive reasonable-cost reimbursement for the Medicare 
services they provide.
    This new program creates an important alternative for small, rural 
hospitals. The CAH program provides regulatory relief and more 
equitable financing options to rural hospitals by assisting states in 
proactively responding to market changes, removing restrictive 
standards, and supporting network development and regional approaches 
to health care. The Federal Office of Rural Health Policy will soon be 
awarding first year grants to state offices of rural health to assist 
them in the development of state rural health plans and health care 
networks, designation and conversion of CAHs, and the improvement of 
rural emergency medical services.
    The NRHA applauds the work of the Subcommittee last year for 
ensuring the inclusion of first year funding for this program in fiscal 
year 1999 appropriations legislation and urges the Subcommittee to 
continue its support by providing second year funding of $25 million. 
This money is necessary to ensure states, communities and CAHs receive 
the financial support necessary to fully and properly implement the 
program as Congress intended.
    Third, the NRHA requests that the Subcommittee provide $50 million 
for the Rural Health Outreach, Network Development and Telemedicine 
Grant program. This program, which was reauthorized in 1996, provides 
important grant opportunities to rural communities. Since 1991, over 
300 rural communities have benefited from innovations in health care 
service delivery. Rural Health Outreach grants have never been more 
important to rural communities given recent documentation regarding the 
impact the changes in Medicare and Medicaid reimbursement policy 
contained in the BBA are having on our nation's rural health care 
delivery system.
    A recent report by the Rural Policy Research Institute (RUPRI) 
states, ``Various provisions of the BBA each affect a component of the 
rural health delivery system and their combined impact could lead to a 
radical restructuring of the system.'' The report entitled, ``Taking 
Medicare into the 21st Century: Realities of a Post BBA World and 
Implications for Rural Health Care,'' also states that ``Given low 
enrollment into managed care and limited use of any Medicare-risk plans 
in rural areas for the foreseeable future, the impacts of changes in 
traditional Medicare are of vital concern for the welfare of rural 
beneficiaries.''
    The program offers grants to rural communities working to provide 
health care services through new and innovative strategies including 
telemedicine and trauma care services. Rural outreach grants also 
provide funding to communities to develop formal, integrated networks 
of providers that may offer a range of primary and acute care services. 
Network development grants are designed to develop organizational 
capacity in the rural health sector through formal collaborative 
partnerships involving shared resources and possible risk-sharing.
    One outreach grant in Lock Haven, Pennsylvania, provides health 
promotion classes and health screening program throughout rural Clinton 
County. Health screening services, conducted in local fire halls 
include checking for hypertension, diabetes, elevated cholesterol 
levels, skin cancer and other conditions. Clients are referred to 
appropriate sources of care as needed. The grant also supports health 
education classes on such topics as diet, exercise, nutrition and 
diabetes control.
    Another example of successful use of an outreach grant is in 
Marshalltown, Iowa, where medical and dental services are being 
provided to underserved children, youth and families through a school-
based outreach program. Using a mobile medical clinic, services are 
rotated among four elementary schools. Hundreds of elementary school 
children have received primary medical care and dental services through 
this project. The grant has also established an emergency prescription 
drug reimbursement program for low income students and their families.
    The NRHA recommends Congress provide $15 million for the Rural 
Health Research Grant program. This grant program currently supports 
five rural health research centers that provide policy relevant 
research to Congress and the U.S. Department of Health and Human 
Services relating to rural hospitals, health professionals, delivery of 
mental health services, functioning of managed care systems, and more 
recently, the impact of the Balanced Budget Act on the rural health 
care delivery system.
    This program also provides approximately $8 million in telemedicine 
grants to improve access to quality health care services for rural and 
frontier residents through telemedicine technologies. Grantees of this 
program are demonstrating how telemedicine can be an instrumental part 
of a rural health care network in efficiently and cost-effectively 
providing health care services to the people it serves.
    Consisting of 38 regional sites, the Marshfield Clinic Network of 
Marshfield, Wisconsin, provides extensive telecommunications network 
administration and business functions such as e-mail and patient care 
conferencing. Grant money is allowing the clinic to expand and provide 
clinical telemedicine services to two underserved communities--Park 
Falls and Ladysmith. Services currently being provided via telemedicine 
technologies are emergency medicine, oncology, psychiatry, dermatology, 
radiology, occupational medicine, nurse triage services and compliance 
follow-ups. Funding has allowed the Marshfield Clinic to provide these 
two communities with on-line patient and professional information and 
resources as well as to evaluate the human factor and clinical outcomes 
of telemedicine.
    Another telemedicine grant is supporting a collaborative effort in 
Texas that is using telecommunications technology to improve rural 
emergency care services through a continuing education network for 
emergency care personnel. This network links rural providers with each 
other as well as with more specialized care sites. Additionally, the 
consortium members, which include Stephen F. Austin State University, 
Piney Wood Area Health Education Center, the Council for the 
Advancement of Rural Education, the University of Texas Medical Branch, 
and the University of Texas, Houston Health Science Center, have 
developed a wide range of educational programming for rural emergency 
medical technicians.
    Increased funding is also needed for the Consolidated Health 
Centers programs, which provide primary health care services to our 
nation's rural and urban underserved populations. In fact, in many 
rural communities the only health care entity providing primary and 
preventive health care services to residents is a community health 
center (CHC). Overall, CHCs provide services to ten million residents 
of underserved areas, with about 50 percent of the users being from 
rural areas. CHCs have been proven to significantly improve a 
community's health especially when it provides maternal and child 
health care services as well as child immunizations. Migrant health 
services, which are included in this program, provide migrant and 
seasonal farmworkers with access to primary health care services.
    It is important to note that CHCs have added more than 1 million 
uninsured patients to their rolls in the last three years alone as 
declines in uncompensated care by other providers have occurred due to 
lost revenues by commercial managed care plans. Adequate funding for 
CHCs is crucial given that over 80 percent of patients seen by CHCs 
have their care paid by Medicaid, Medicare and federal grants to care 
for the uninsured. The NRHA urges the Subcommittee to provide $1.25 
billion for the Consolidated Health Centers program for fiscal year 
2000 to continue improving the health status of our country's 
underserved populations.
    Lastly, the NRHA is opposed to the 20 percent decrease for Health 
Professions programs contained in the President's fiscal year 2000 
budget. These programs are the main source of education and training 
for rural health care providers as virtually all GME payments go to 
urban-based teaching hospitals. The association urges the Subcommittee 
to continue adequate funding for these vital programs, which enhance 
the ability of rural health care providers to care for rural and 
frontier residents.
    The NRHA wishes to thank Chairman Specter and members of the 
Subcommittee again for the opportunity to submit for the record the 
NRHA's fiscal year 2000 funding requests. It is important that we work 
together to guarantee a healthier life for rural and frontier 
Americans. However, due to the geographical, distance and financial 
restraints that many rural and frontier communities face, this progress 
depends upon the assistance and leadership of the federal government. 
The NRHA stands ready to work with the Subcommittee and the Congress to 
ensure access and quality of essential health care services continue to 
improve for our country's rural and frontier residents.

                                        NATIONAL RURAL HEALTH ASSOCIATION
                                              [Dollars in millions]
----------------------------------------------------------------------------------------------------------------
                                                                              Fiscal years--
                                                         -------------------------------------------------------
                                                                                                 2000
                                                            1999   2000    2000   2000 House    Senate     2000
                                                           Final   NRHA  Clinton     bill        bill      Final
----------------------------------------------------------------------------------------------------------------
Rural Health Outreach and Network Development Grant          38.9  50.0  \1\ 31.  ..........  ..........  ......
 Program................................................                    4
                                                          .......  (+11  .......  ..........  ..........  ......
                                                                    .1)
Rural Health Research...................................     11.7  15.0  \1\ 6.1  ..........  ..........  ......
                                                          .......  (+3.  .......  ..........  ..........  ......
                                                                     3)
Office for the Advancement of Telehealth................      0.0  0.0   \1\ 13.  ..........  ..........  ......
                                                                            0
Rural Hospital Flexibility Program......................     25.0  25.0  25.0     ..........  ..........  ......
                                                          .......  (0.0  (0.0)    ..........  ..........  ......
                                                                      )
Consolidated Health Centers Program.....................    925.0  1,02  945.0    ..........  ..........  ......
                                                                   5.0
                                                          .......  (+10  (+20.0)  ..........  ..........  ......
                                                                   0.0)
National Health Service Corps...........................    115.4  155.  115.4    ..........  ..........  ......
                                                                     0
                                                          .......  (+39  (0.0)    ..........  ..........  ......
                                                                    .6)
State Offices of Rural Health Program...................  ( \2\ )  5.0   ( \2\ )  ..........  ..........  ......
Family Medicine Training Departments of Family Medicine/     51.1  56.2  .......  ..........  ..........  ......
 Residency (HP).........................................
                                                          .......  (+5.  .......  ..........  ..........  ......
                                                                     1)
Physician Assistants (HP)...............................      6.8  7.5   .......  ..........  ..........  ......
                                                          .......  (+0.  .......  ..........  ..........  ......
                                                                     7)
Rural Interdisciplinary Training Program (HP)...........      4.3  4.7   .......  ..........  ..........  ......
                                                          .......  (+0.  .......  ..........  ..........  ......
                                                                     4)
Allied Health Program (HP)..............................      5.0  5.5   .......  ..........  ..........  ......
                                                          .......  (+0.  .......  ..........  ..........  ......
                                                                     5)
Area Health Education Centers (HP)......................     33.4  36.7  .......  ..........  ..........  ......
                                                          .......  (+3.  .......  ..........  ..........  ......
                                                                     3)
Nurse Special Projects (HP).............................     11.0  12.1  .......  ..........  ..........  ......
                                                          .......  (+1.  .......  ..........  ..........  ......
                                                                     1)
Nurse Traineeships (HP).................................     16.5  18.2  .......  ..........  ..........  ......
                                                          .......  (+1.  .......  ..........  ..........  ......
                                                                     7)
Nurse Anesthetists (HP).................................      2.9  3.2   .......  ..........  ..........  ......
                                                          .......  (+0.  .......  ..........  ..........  ......
                                                                     3)
Nurse Practitioners/Nurse Midwives (HP).................     18.3  20.1  .......  ..........  ..........  ......
                                                          .......  (+1.  .......  ..........  ..........  ......
                                                                     8)
                                                         -------------------------------------------------------
      Subtotal Health Professions.......................    304.3  334.  252.0    ..........  ..........  ......
                                                                     7
                                                          .......  (+30  (-52.3)  ..........  ..........  ......
                                                                    .4)
                                                         =======================================================
AHCPR...................................................    171.1  171.  206.0    ..........  ..........  ......
                                                                     1
                                                          .......  (0.0  (+34.9)  ..........  ..........  ......
                                                                      )
HCFA, Office of Research, Demonstration and Evaluation..     50.0  50.0  55.0     ..........  ..........  ......
                                                          .......  (0.0  (+5.0)   ..........  ..........  ......
                                                                      )
National Institute for Occupational Safety and Health:       23.1  23.1  \3\ 23.  ..........  ..........  ......
 Agricultural Health and Safety.........................                    1
                                                          .......  (0.0  (0.0)    ..........  ..........  ......
                                                                      )
Infant Mortality Initiative--Healthy Start..............    105.0  105.  105.0    ..........  ..........  ......
                                                                     0
                                                          .......  (0.0  (0.0)    ..........  ..........  ......
                                                                      )
Preventive Health Block Grant...........................    150.0  150.  120.0    ..........  ..........  ......
                                                                     0
                                                          .......  (0.0  (-30.0)  ..........  ..........  ......
                                                                      )
AIDS--Ryan White Title III..............................     94.3  100.  130.0    ..........  ..........  ......
                                                                     0
                                                          .......  (+5.  (+35.7)  ..........  ..........  ......
                                                                     7)
Black Lung Clinic Program...............................      5.0  5.0    5.0     ..........  ..........  ......
                                                          .......  (0.0  (0.0)    ..........  ..........  ......
                                                                      )
----------------------------------------------------------------------------------------------------------------
\1\ Funding previously contained in the Rural Health Outreach and Rural Health Research programs supporting
  telehealth activities has been transferred to the new Office for the Advancement of Telehealth.
\2\ Report language allows $3 million to be allocated annually from the NHSC budget for the SORH program. The
  President's FY 2000 budget contains language providing funds for the SORH program from the NHSC allocation,
  but does not specify a specific dollar amount.
\3\ Total funding for the NIOSH increased by six percent in the President's FY 2000 budget.


                            NATIONAL HEALTH SERVICE CORPS FIELD STRENGTH BY PROVIDER TYPE, DISCIPLINE, AND URBAN/RURAL STATUS FOR FISCAL YEAR 1998--(AS OF 09/30/98)
------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------
                                                                  Non-
                        State                           State   obligated   Obligated   NHSC   NHSC LRP   State   COMM    MD/DO    DD      NP      PA      NM     M&BH    Other    Urban   Rural
                                                        total    Federal     Federal     SCH               LRP     SCH
------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------
Alabama..............................................      45           1  ..........      17        23  ......       4      25       8      10       2  ......  ......  .......      15      30
Alaska...............................................      11  ..........  ..........       6         5  ......  ......       4  ......       3       4  ......  ......  .......       2       9
Arizona..............................................      48           1  ..........      21        14      12  ......      31       2       5       9  ......  ......   1 (NU)      12      36
Arkansas.............................................      15  ..........  ..........       3        12  ......  ......      10       3  ......  ......  ......       2  .......       3      12
California...........................................     164           1  ..........      31        53      78       1      93      23      17      28  ......       2   1 (NU)      80      84
Colorado.............................................      56  ..........  ..........       7        49  ......  ......      31       3       8      11       2  ......   1 (DH)      18      38
Connecticut..........................................      32  ..........  ..........       5        20       7  ......      11       5       7       3       4       2  .......      31       1
Delaware.............................................       4  ..........  ..........       1         3  ......  ......       4  ......  ......  ......  ......  ......  .......       4  ......
D. of Columbia.......................................      17           3           1       3        10  ......  ......       9       2       5       1  ......  ......  .......      17  ......
Florida..............................................      63           8           1      12        42  ......  ......      30      10      10       7       3       2  1 (POD)      19      44
Georgia..............................................      90           1           1      24        49      10       5      46       9       7      24       2       1   1 (NU)      41      49
Hawaii...............................................       4           1  ..........       1         2  ......  ......       3  ......       1  ......  ......  ......  .......       2       2
Idaho................................................      22  ..........  ..........       8        14  ......  ......      15       1       1       5  ......  ......  .......  ......      22
Illinois.............................................      82  ..........  ..........      22        45      15  ......      50       5      12      10       4       1  .......      69      13
Indiana..............................................      33  ..........           1      11        21  ......  ......      16       2       6       3       2       4  .......      15      18
Iowa.................................................      29           1  ..........       7        16       5  ......      16       1       2       9  ......       1  .......      10      19
Kansas...............................................      29  ..........  ..........       8        21  ......  ......      11       2       3       9  ......       4        3      26
Kentucky.............................................      33  ..........  ..........      12        18  ......       3      16       3       4       5       1       4  .......       2      31
Louisiana............................................      38           1  ..........       7         9      21  ......      23       9       3       2  ......       1  .......      19      19
Maine................................................      39  ..........  ..........      15        15       9  ......      22       3       4       8  ......       2        1      38
Maryland.............................................      31           2  ..........       4         9      16  ......      26       2       2       1  ......  ......  .......      11      20
Massachusetts........................................      66           1  ..........      22        31      12  ......      36       9      18  ......       2       1  .......      65       1
Michigan.............................................     153           1  ..........      23        62      67  ......      89      19      10      28       5       2  .......      51     102
Minnesota............................................      34  ..........  ..........       4        24       6  ......      15  ......       5       4       2       8  .......       5      29
Mississippi..........................................      35           2  ..........       4        29  ......  ......      13      12      10  ......  ......  ......  .......       7      28
Missouri.............................................      69           2  ..........      14        48       5  ......      39       5      16       2  ......       7  .......      25      44
Montana..............................................      13  ..........  ..........       3        10  ......  ......      10  ......       2       1  ......  ......  .......  ......      13
Nebraska.............................................      26  ..........  ..........       2        24  ......  ......      12       2       2       4  ......       6  .......       3      23
Nevada...............................................      13  ..........  ..........       4         3       5       1       6  ......       1       6  ......  ......  .......       2      11
New Hampshire........................................       9  ..........  ..........       2         3       4  ......       5  ......       3       1  ......  ......  .......       4       5
New Jersey...........................................      23           1  ..........       2        11       9  ......      11       9  ......       1       1       1  .......      14       9
New Mexico...........................................      47           3  ..........      10        19      15  ......      14      13      11       6       1       2  .......       8      39
New York.............................................     190  ..........  ..........      19       125      46  ......     112      29      13      25       8       3  .......     164      26
North Carolina.......................................     115           6  ..........      31        58      20  ......      60       4      10      37       3       1  .......      14     101
North Dakota.........................................       6  ..........  ..........       2         4  ......  ......       3  ......       1       2  ......  ......  .......  ......       6
Ohio.................................................      52  ..........  ..........      16        33       3  ......      39       5       3  ......       5  ......  .......      29      23
Oklahoma.............................................      11  ..........  ..........       5         6  ......       3  ......       1       1  ......       4       7
Oregon...............................................      40           1  ..........      14        23  ......       2      21       6       5       5       2       1  .......       4      36
Pennsylvania.........................................      98           1           1      18        39      39  ......      51      17      13      15       2  ......  .......      45      53
Rhode Island.........................................      13  ..........  ..........       3         7       3  ......       4       7  ......       1  ......  ......   1 (DH)      12       1
South Carolina.......................................      52           1  ..........      15        36  ......  ......      33  ......      15       4  ......  ......  .......       6      46
South Dakota.........................................      13  ..........  ..........       5         6       2  ......       6  ......       2       3  ......       2  .......       1      12
Tennessee............................................      33  ..........  ..........      12        20       1  ......      15       9       6       1       2  ......  .......      18      15
Texas................................................     144           3  ..........      29        48      63       1      84      20      15      22       2  ......   1 (NU)      67      77
Utah.................................................      47  ..........  ..........       3        40       4  ......      28       4       2       9  ......       4  .......      12      35
Vermont..............................................       2  ..........  ..........  ......         1       1  ......  ......  ......  ......       1  ......       1  .......  ......       2
Virginia.............................................      26  ..........  ..........       5        18       3  ......      14       4       5       3  ......  ......  .......  ......      26
Washington...........................................      96           3  ..........       9        67      14       3      46      28       7      12       2  ......   1 (DH)      35      61
West Virginia........................................      40  ..........           1      15        11      11       2      14       3       4      17       2  ......  .......  ......      40
Wisconsin............................................      35  ..........  ..........      11        22       2  ......      17       4       2       4  ......       8  .......      12      23
Wyoming..............................................      27  ..........  ..........       1        26  ......  ......      11  ......       1       9  ......       6  .......  ......      27
Guam.................................................       1  ..........  ..........       1  ........  ......  ......       1  ......  ......  ......  ......  ......  .......  ......       1
Pacific Basin........................................       2           2  ..........  ......  ........  ......  ......  ......       2  ......  ......  ......  ......  .......  ......       2
Puerto Rico..........................................      23          17  ..........       4         2  ......  ......      19       4  ......  ......  ......  ......  .......       4      19
Virgin Islands.......................................  ......  ..........  ..........  ......  ........  ......  ......  ......  ......  ......  ......  ......  ......  .......  ......  ......
                                                      ------------------------------------------------------------------------------------------------------------------------------------------
      Total number...................................   2,439          64           6     533     1,306     508      22   1,326     308     295     364      58      80        8     985   1,454
      Total percent..................................     100         2.6         0.3    21.9      53.5    20.8     0.9    54.4    12.6    12.1    14.9     2.4     3.3      0.3    40.4    59.6
------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------
Non-obligated Federal = Federal-salaried providers who do not currently have a scholarship or loan repayment obligation.
NHSC Federal obligated = Providers doing long-term training or serving in the USUHS.
NHSC SCH = Providers with a current National Health Service Corps scholarship obligation.
NHSC LRP = Providers with a current National Health Service Corps loan repayment obligation.
State LRP = Providers with a current State loan repayment obligation.
COMM SCH = Providers with a current Community Scholarship Program obligation.
MD/DO = Phsician; DD = Dentist; NP =Nurse Practitioner; PA = Physician Assistant; NM = Nurse Midwife; M&BH = Mental and Behavioral Health.
Other is listed as NU = Nurse; DH = Dental Hygienist; POD = Podiatrist.
Urban = Providers serving at a site in an urban setting; Rural = Providers serving at a site in a rural setting.

                                 ______
                                 
   Prepared Statement of the American Academy of Physician Assistants
    On behalf of the more than 34,000 clinically practicing physician 
assistants in the United States, the American Academy of Physician 
Assistants is pleased to submit comments on fiscal year 2000 
appropriations for Physician Assistant (PA) education programs that are 
authorized through Title VII of the Public Health Service Act.
         overview of physician assistant education and practice
    As committee members may be aware, 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 110 
accredited PA educational programs.
    Prior to admission, the typical PA student has a bachelor's degree 
and over four years of health care experience. PA education typically 
is 25 months in length and includes more than 400 hours in basic 
sciences, more than 149 hours in behavioral sciences, and more than 535 
hours in clinical medicine. PA students also complete more than 2,000 
hours in clinical rotations, with an emphasis on primary care. Upon 
completion of an accredited PA program, PAs must complete a rigorous 
national certifying exam administered by the National Commission on 
Certification of Physician Assistants. To maintain their certification, 
PAs must complete 100 hours of continuing medical education every two 
years and take a recertification exam every six years.
    PAs work in virtually every type of medical and surgical specialty, 
including family/general medicine, internal medicine, obstetrics/
gynecology, pediatric medicine, occupational medicine, and emergency 
medicine. PAs' primary employment settings include individual physician 
offices, group practices, managed care organizations, hospitals, and 
outpatient clinics.
             contribution of pas as primary care providers
    The PA profession has a long standing commitment to practice in our 
nation's small towns, rural areas, and underserved communities. PAs 
play a pivotal role in expanding access to primary care services, 
particularly in medically underserved communities. Data collected in 
1998 show that over half of the PA profession is in family/general 
practice medicine, general internal medicine, general pediatrics, and 
obstetrics/gynecology. More than a third of the profession practice in 
communities of less than 50,000 people.
    Studies conducted by the Rand Corporation have found that PAs save 
costs, can perform a substantial portion of the functions in an 
ambulatory care practice, and are widely accepted by patients. The 
congressional Office of Technology Assessment studied health care 
services provided by PAs and determined that ``within their scope of 
practice, physician assistants provide health care that is 
indistinguishable in quality from care provided by physicians.''
  critical role of the title vii, public health service act, programs
    Despite an increase in state health insurance reforms, a reduced 
rate of growth in health care spending, and the emergence of a new 
children's health insurance program, a growing number of Americans lack 
access to primary care, either because they are uninsured, 
underinsured, or they live in a community with an inadequate supply or 
distribution of providers. The growth in the uninsured U.S. population 
increased from approximately 32 million in the early 1990s to an 
estimated 43.1 million, or 18.3 percent of the nonelderly population, 
in 1999. Simultaneously, the number of medically underserved 
communities continues to rise, from 1,949 in 1986 to 2,723 in 1998.
    The role of the Title VII programs is to alleviate these problems 
by supporting access to quality, affordable, and cost-effective care in 
areas of our country that are most in need of health care services, 
specifically rural and urban underserved communities. This is 
accomplished through the support of educational programs that train 
more health professionals in fields experiencing shortages, improve the 
geographic distribution of health professionals, and increase access to 
care in underserved communities.
    The Title VII programs are the only federal education programs that 
are designed to address the supply and distribution imbalances in the 
health professions. Since the establishment of Medicare, the costs of 
physician residencies, nurses and some allied health professions 
training has been paid through Graduate Medical Education (GME) 
funding. However, GME has never been available to support PA education. 
More importantly, GME was not intended to nor does it generate a supply 
of providers who are willing to work in the nation's medically 
underserved communities. That is the purpose of the Title VII Public 
Health Service Act Programs, which support such initiatives as loans 
and scholarships for disadvantaged students, scholarships for students 
with exceptional financial need, centers of excellence to recruit and 
train minority and disadvantaged students, and interdisciplinary 
initiatives in geriatric care and rural health care.
               title vii support of pa education programs
    Targeted federal support for PA education programs is currently 
authorized through Section 747 of the Public Health Service Act. The 
program was recently reauthorized in the 105th Congress through the 
Health Professions Education Partnerships Act of 1998, Public Law 105-
392, which streamlined and consolidated the federal health professions 
education programs. Support for PA education is now considered within 
the broader context of training in primary care medicine and dentistry.
    Public Law 105-392 reauthorized awards and grants to schools of 
medicine and osteopathic medicine, as well as colleges and 
universities, to plan, develop, and operate accredited programs for the 
education of physician assistants and faculty, with priority given to 
training individuals from disadvantaged communities. The funds ensure 
that PA students from all backgrounds have continued access to an 
affordable education and encourage PAs, upon graduation, to practice in 
underserved communities. These goals are accomplished by funding PA 
education programs that have a demonstrated track record of: (1) 
placing PA students in health professional shortage areas; (2) exposing 
PA students to medically underserved communities during the clinical 
rotation portion of their training; and (3) recruiting and retaining 
students who are indigenous to communities with unmet health care 
needs.
    The program works. A review of PA graduates from 1991-1999 reveals 
that 16.5 percent of students graduating from PA programs supported by 
Title VII are from underrepresented minorities, compared to 7.7 percent 
of graduates from programs that did not receive Title VII support. In 
the same vein, 13.5 percent of the graduates who attended PA programs 
receiving Title VII support during the eight-year period practice in 
underserved settings, compared to 10.1 percent of graduates of programs 
not receiving such support during the same period.
    Without Title VII funding, many of the special PA training 
initiatives that are designed to encourage PA practice in underserved 
communities would not be possible. Institutional budgets and student 
tuition fees simply do not provide sufficient funding to meet the 
special, unmet needs of medically underserved areas or disadvantaged 
students. Nevertheless, the need is very real, and Title VII is 
critical in meeting it.
     need for increased title vii support for pa education programs
    Increased Title VII support for educating PAs to practice in 
underserved communities is particularly important given the market 
demand for physician assistants. Without the Title VII funding to 
expose students to underserved sites during their training, PA students 
are far more likely to practice in the communities where they were 
raised or the communities in which they attended school. Title VII 
funding is a critical link in addressing the natural geographic 
maldistribution of health care providers by exposing students to 
underserved sites during their training, where they frequently choose 
to practice following graduation.
    The supply of physician assistants is inadequate to meet the needs 
of society, and the demand for PAs is expected to increase. A 1994 
report of a workgroup of the Council on Graduate Medical Education 
(COGME), ``Physician Assistants in the Health Workforce,'' estimated 
that the anticipated medical market demand and the estimated workforce 
requirements for PAs would exceed demand. Additionally, the Bureau of 
Labor Statistics projects that the number of available PA jobs will 
increase 47 percent between 1996 and 2002.
    Despite the increased demand for PAs, funding has not 
proportionately increased for the Title VII programs that are designed 
to educate and place physician assistants in underserved communities. 
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 $6.376 million. PA program funding was slightly increased 
again for fiscal year 1998 at $6.398 million and again for fiscal year 
1999 at $6.623 million. In 1992-1993, approximately 64 percent of 55 PA 
programs received federal support, at an average of $143,500 per grant. 
In 1996-1997, less than half of 77 PA programs reported receiving 
federal support, at an average of $152,300 per grant. The fiscal year 
1998 appropriation provided 42 awards to support the training of 
approximately 1600 PA graduates.
              recommendations on fiscal year 2000 funding
    The American Academy of Physician Assistants urges members of the 
Appropriations Committee to consider the inter-dependency of all the 
public health agencies and programs when determining funding for fiscal 
year 2000. For instance, while it is important to fund clinical 
research at the National Institutes of Health (NIH) and to have an 
infrastructure at the Centers for Disease Control (CDC) that ensures a 
prompt response to an infectious disease outbreak, the good work of 
both of these agencies will go unrealized if the Health Resources and 
Services Administration (HRSA) 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 educated in Title VII-funded programs. Likewise, CDC 
is heavily dependent upon an adequate supply of health care providers 
to be sure that disease outbreaks are reported, tracked, and contained.
    The critically important programs administered by NIH, HRSA, and 
CDC are integral components within the nation's public health 
continuum. One component is not more important than another, and no one 
component can succeed without adequate support from each of the other 
elements. The Academy is particularly concerned that any increase for 
the NIH not be made at the expense of the health professions education 
program or other public health programs.
    The American Academy of Physician Assistants is particularly 
appreciative of the increases in funding for PA and other health 
professions education programs that were appropriated during the 105th 
Congress. However, these increases have not been sufficient to meet the 
increasing demand for PA graduates and other primary care practitioners 
in the growing number of medically underserved communities.
    A member of the Health Professions and Nursing Education Coalition 
(HPNEC), the American Academy of Physician Assistants supports HPNEC's 
recommendation to appropriate $316 million in fiscal year 2000 for the 
Titles VII and VIII health professions programs. The HPNEC 
recommendation represents a 4 percent increase over the amount Congress 
appropriated in fiscal year 1999. Similarly, the Academy requests that 
the fiscal year 2000 appropriation for the Title VII PA Education 
Program be no less than $7.072 million, representing a 4 percent 
increase over the fiscal year 1999 allocation amount.
    Thank you for the opportunity to present the American Academy of 
Physician Assistants' views on fiscal year 2000 appropriations.
                                 ______
                                 
Prepared Statement of Susan Scrimshaw, President-elect, Association of 
                        Schools of Public Health
    Mr. Chairman, I am Susan Scrimshaw, dean of the School of Public 
Health at the University of Illinois at Chicago and President-elect of 
the Association of Schools of Public Health (ASPH).
    I would like to thank you, Mr. Chairman and members of the 
subcommittee, for the opportunity to present our statement on the ASPH 
fiscal year 2000 appropriations requests for PHS programs of primary 
concern to the academic public health community. You will find a chart 
at the end of my statement that outlines these recommendations. For 
now, I would like to highlight some of them.
                   prevention research centers (cdc)
    The Congress established the CDC prevention research centers 
program in 1985 to provide grants to academic institutions to fund 
applied research designed to develop new and innovative strategies in 
health promotion and disease prevention. Through this program, the 
expertise of a number of schools of public health is made available to 
federal, state and local health officials, community-based 
organizations and nonprofit organizations. Additionally, the centers 
serve as sources of education and training for America's next 
generation of public health professionals. Unfortunately, the funding 
level for the program has never reached the level that Congress 
intended when authorizing the program.
ASPH request
    CDC currently funds 23 prevention research centers at schools of 
public health and schools of medicine across the country. Each center 
has a specific prevention research focus, based largely upon its 
faculty expertise and geographic location. However, core funding for 
prevention centers has been decreasing since the program was first 
funded in 1986 from an average of approximately $800,000 per center to 
the current year average of approximately $580,000 per center. ASPH 
requests that the Congress increase the funding for this important 
program from the current year level of $13.5 million to $30 million. 
These funds will be used for the following purposes: To increase the 
core funding of centers such that the average core award is $1 million 
(as intended by the Congress) which would allow CDC the flexibility to 
provide additional funding to centers which have undertaken a more 
aggressive program; to provide sufficient resources to permit not more 
than six new, competitively selected centers; and to provide the 
necessary resources for administration of an expanded program at CDC. 
Additionally, ASPH requests that the Congress include report language 
directing that CDC fund the most qualified applications in a peer 
review process, regardless of geographic location.
    It is evident that the research investment in prevention has 
numerous benefits for the American people. Prevention research promotes 
healthy behaviors, expands screening for detection of diseases 
treatable in early stages, offers education in making wise health 
choices, and encourages community action for programs, policies and 
practices that can reduce disease risks. Increasing funds for 
prevention research centers in fiscal year 2000 will enable them to 
expand community-based interventions further into communities, allowing 
wider access to lifesaving research and interventions.
                  prevention research initiative (cdc)
    Mr. Chairman, we respectfully request that $100 million be 
allocated toward a program of competitive extramural research at CDC. 
This request represents an increase over the President's request of $15 
million for the program, but the same as requested by CDC in internal 
budget deliberations with OMB.
    The benefits of population-based prevention are astounding. The 
Journal of the American Medical Association published a widely accepted 
article in 1993 that estimates that only 10 percent of all early deaths 
in this country can be prevented by medical treatment. By contrast, the 
study found that population-wide public health approaches have the 
potential to prevent up to 70 percent of these early deaths through 
measures that target underlying risks, such as tobacco, drug and 
alcohol use, injury, diet and sedentary lifestyles, violence and 
environmental factors.
ASPH request
    The Association of Schools of Public Health requests that Congress 
increase the funding for the CDC prevention research initiative to $100 
million. Such a program should focus on conducting priority research in 
the following areas: investigations into the epidemiology of disease, 
including identification of social and behavioral determinants of 
illness; studies of means to ameliorate personal, social and 
environmental factors contributing to disease onset or exacerbation; 
investigations into the disproportionate disease burden among 
underserved populations; studies of vulnerable populations with a high 
disease burden; studies into immunization strategies and of methods for 
and the cost-effectiveness of population screening programs; and 
studies into the means by which further decline in physical or social 
functioning can be prevented in people already ill. Finally, the 
program would serve to expand the capacity of CDC (``the prevention 
agency'') to bring the benefits of prevention to the millions of 
Americans at risk for unnecessary early death.
                health professions education (hrsa/bhpr)
    Mr. Chairman, we are very disappointed that the Administration has 
recommended zero funding for the public health and preventive medicine 
programs administered by the Health Resources and Services 
Administration. If HRSA (``the access agency'') is to carry out its 
charge, then it will need a cadre of well-trained health professionals 
at the state and local levels to do so. As you know, several government 
and private sector sources indicate that as many as 80 percent of state 
and local public health officials have no formal public health 
training.
    The Pew Health Professions Commission, in its 1995 report, entitled 
Critical Challenges: Revitalizing the Health Professions for the Twenty 
First Century, concluded that the demand-driven system in health care 
and health professions practice will result in a surplus of 100,000 to 
150,000 physicians in the next century. However, the same study 
concluded that the demand for public health professionals will increase 
substantially as managed care organizations seek to hold health care 
costs down by employing prevention solutions and community-based 
interventions. This conclusion was further underscored by another 
study, released last month by the Robert Wood Johnson Foundation: A 
Growing Excess of Physicians and a Growing Dominance of HMOs.
    In 1997, DHHS released a report, entitled The Public-Health 
Workforce: An Agenda for the 21st Century, which confirmed the Pew 
Commission's findings when it stated that: ``Today our Nation faces a 
widening gap between challenges to improve the health of Americans and 
the capacity of the public health workforce to meet those challenges.'' 
The Pew report further states that ``the system of care that has 
emerged in the U.S. is focused primarily on those interventions that 
deal with treatment rather than prevention. This has led to relatively 
small investments in broad public health strategies that promote 
healthy communities and individuals.''
ASPH request
    Mr. Chairman, ASPH respectfully requests $20 million for public 
health training and education programs in HRSA. Of this amount, $10 
million would be dedicated to funding public health training centers at 
schools of public health. The total amount, then, would be targeted to: 
make public health education more accessible; create links between 
public health education and future trends in the practice of public 
health; provide education or training for students in practice-based 
sites instead of solely in the classroom; and develop educational 
methods and distance-based learning technologies that ensure the 
ability of the public health workforce to reach underserved 
populations.
    Ensuring that public health training resources remain available to 
schools of public health will bolster the efforts of these institutions 
to educate the next generation of public health professionals in a time 
when population-based prevention efforts are most needed.
                  current workforce development (cdc)
    According to several public health workforce experts in both 
government and the academy, as many as 80 percent of the individuals 
currently working in state or local health departments have no formal 
education in public health. Furthermore, those same experts estimate 
that less than 50 percent of the directors of local health departments, 
many of whom possess MDs, have no public health training. Therefore, a 
critical need exists to provide these professionals with the most up-
to-date training available.
    In addition, the recent focus on potential bioterrorist attacks on 
the United States has led many to question the ability of the current 
public health workforce to deal with such an emergency. There has not 
been a case of smallpox, for example, since the early 70s--and few 
public health professionals are trained to recognize the symptoms of 
this deadly disease. This lack of formal training in infectious 
diseases extends to other biological agents such as anthrax, tularemia, 
boutulinin toxin and plague.
    A recent study commissioned by the US Public Health Service, 
entitled The Public Health Workforce: An Agenda for the 21st Century, 
identifies the need to employ new technologies for distance learning to 
the public health field. The report states, ``All partners in the 
effort to strengthen the public health workforce should make maximum 
use of evolving technologies such as distance learning. A structure 
should be established to develop an integrated distance learning system 
building on existing public and private networks and making information 
on best practices readily available.''
ASPH request
    The Association of Schools of Public Health proposes that the 
Congress include an additional $10 million to the CDC Public Health 
Practice Program Office, to provide for professional workforce 
development services to public health employees. It is proposed that 
CDC select not more than five centers based at accredited schools of 
public health to conduct distance learning and professional workforce 
development activities. Outcomes of these programs include: conducting 
studies to determine the skills that will be necessary for public 
health workers as new threats emerge, including but not limited 
bioterrorism surveillance and treatments; developing a comprehensive 
public health training curriculum to be delivered through the internet, 
or other appropriate mass communication technology; and offering 
masters and doctoral degree programs to public health workers 
nationwide through distance learning technologies.
    Providing $10 million to CDC to establish up to five centers at 
accredited schools of public health that focus on providing 
professional workforce development to public health employees will 
ensure that current public health professionals have the skills and 
resources to meet the pressing public health challenges of the next 
century.
                 children's environmental health (cdc)
    Mr. Chairman, ASPH respectfully requests $8 million for CDC's 
Center for Environmental Health to allow expansion of program to 
include an additional five centers that would conduct research and 
training activities at accredited schools of public health to focus on: 
employing community-based research methods to identify public health 
problems that most affect children's health; developing and testing 
interventions aimed at alleviating the most problematic health threats 
to children; determining the public health aspects of children's 
interactions with environment; and training the next generation of 
public health professionals to focus on identifying the causes of the 
most pressing environmental causes of illness in children.
    This proposal builds on the current EPA/NIEHS-led program by 
placing primary emphasis on identifying children's health threats in 
the environment and developing population-based interventions to 
address these threats. The EPA/NIEHS-led program focuses more on the 
biomedical side of children's environmental health in partnership with 
long-term strategies to reduce disease burdens. The CDC component will 
add population-based approaches to the initiative.
    Mr. Chairman, providing $8 million to CDC, to expand the current 
children's environmental health program (which is funded by EPA and 
NIEHS) to include an additional five centers established at accredited 
schools of public health, will broaden the scope of the current program 
to include prevention research that will help protect children from 
environmental health risks.
                  environmental research centers (cdc)
    We are delighted with the Committee's support of CDC's 
environmental research centers. We respectfully ask Congress to 
appropriate an additional $5 million to expand the research training 
and regional research activities of the 15 NIOSH Education and Research 
Centers and an additional $15 million increase in the NIOSH budget to 
implement the National Occupational Research Agenda (total increase in 
the NIOSH budget of $20 million). In addition to training occupational 
health professionals, the ERCs train academic researchers and initiate 
research programs that meet regional needs, especially through 
partnerships with regional stakeholders that include management, labor, 
and academic institutions.
                                summary
    As we prepare to enter the 21st century, we urge you and members of 
the subcommittee to renew the long-standing commitment and support to 
the Public Health Service by increasing funding for agencies that have 
contributed to making the US health system the best in the world. These 
public health partners, along with state and local public health 
agencies and community-based organizations, and this nation's 28 
accredited schools of public health, have nurtured and harvested 
federal investment in improving the health status of the American 
public. As such, we support the fiscal year 2000 appropriations 
requests of the following coalitions that have or will testify before 
your subcommittee:
  --Ad Hoc Group for Medical Research Funding
  --CDC Coalition
  --Coalition for Health Funding
  --Friends of AHCPR
  --Friends of NIOSH
  --Friends of Title V (MCH Block Grant)
  --Health Professions and Nursing Education Coalition
  --Injury Control and Research Centers Coalition
    Mr. Chairman, the requests outlined by these coalitions represent 
needs assessments that were derived from the views and expert opinions 
of this country's most respected administrators, scholars, scientists 
and leaders in the public health sector. I know you and the 
subcommittee members will take them into serious consideration when 
marking-up the fiscal year 2000 appropriations bill.
    Mr. Chairman, I would like to end my testimony by again thanking 
and commending you and the members of the subcommittee for supporting 
PHS programs in general, and academic public health programs, in 
particular. The latter contribute to our efforts to educate and train 
public health professionals in the population/community-based 
approaches to the prevention and control of disease and promotion of 
health among individuals and communities.
    Listed below are the ASPH fiscal year 2000 funding recommendations 
for programs of primary concern to the academic public health 
community:

Centers for Disease Control and Prevention

                        [In millions of dollars]

Prevention Research Centers (PRCs)................................    30
Prevention Research...............................................   100
NIOSH Training (ERCs).............................................    20
Environmental Research............................................     8
Injury Control and Research (ICRCs)...............................    20
NCHS..............................................................   110

Health Resources and Services Administration

                        [In millions of dollars]

Public Health, Preventive Medicine and Dental Public Health.......    20
MCH Training......................................................    20
Health Professions (total)........................................   316
MCH Block Grant (total)...........................................   800
HRSA Program Management...........................................   136

National Institutes of Health

                        [In billions of dollars]

NIH (total).......................................................    18

Agency for Health Care Policy and Research

                        [In millions of dollars]

AHCPR (total).....................................................   225
                                 ______
                                 

  Prepared Statement of Deb Beck, President, Drug and Alcohol Service 
                 Providers Organization of Pennsylvania
    My name is Deb Beck and I am the President of the Drug and Alcohol 
Service Providers Organization of Pennsylvania (DASPOP), a statewide 
coalition of drug and alcohol prevention and treatment programs, 
practitioners, employee assistance programs, and drug and alcohol 
associations representing more than 365 organizations, programs and 
clinics, over 3,000 certified addiction professionals, 1,200 student 
assistance professionals, and 400 prevention specialists. Thank you for 
this opportunity to submit testimony in support of increased fiscal 
year 2000 funding for alcohol and drug treatment, prevention, and 
research programs in the Departments of Health and Human Services and 
Education.
    Today I am representing the views of DASPOP, the National Coalition 
of State Alcohol and Drug Treatment and Prevention Associations, which 
is composed of 27 state-based associations of treatment and prevention 
providers in 24 states, and the Legal Action Center, a non-profit law 
and policy firm that represents individuals in recovery from and 
struggling with alcohol and drug problems and AIDS.
    Thank you, Mr. Chairman and members of the subcommittee, for last 
year's historic increases for alcohol and drug treatment, prevention 
and research programs and your refusal to cut funding for these 
services. Providing strong support for alcohol and drug treatment, 
prevention, and research is essential to maintaining and improving the 
health and well being of our nation. These programs saves lives and 
money by decreasing alcohol and drug use, crime, health care costs, 
AIDS and welfare dependence and increasing employment.
             treatment and prevention needs in pennsylvania
    Pennsylvania programs have been leaders in developing effective 
alcohol and drug treatment programs for women, youth, criminal justice 
offenders, and other underserved populations. However, despite the 
success of these programs, the annual waiting list for alcohol and drug 
treatment services in Pennsylvania is approximately 49,000 individuals. 
These individuals represent only a small portion of the actual number 
of persons in need of treatment services.
    Despite last year's generous increases for the Substance Abuse 
Prevention and Treatment (SAPT) Block Grant, this year in Pennsylvania 
we are expecting reductions in alcohol and drug treatment services. 
Fewer services will be available because reductions in other funding or 
benefits that have helped to support alcohol and drug treatment 
services have occurred. Some examples of these funding and benefit 
reductions include:
  --Reduced Medicaid Coverage.--Many individuals with alcohol and drug 
        problems have lost their Medicaid coverage which helped to pay 
        for their alcohol and drug treatment. Some individuals lost 
        their coverage due to changes in Pennsylvania law, while others 
        lost Medicaid coverage because of changes in federal law which 
        made individuals with a primary diagnosis of alcoholism or drug 
        dependence ineligible for SSI and Medicaid. These changes in 
        eligibility have created a funding shortfall of more than $80 
        million.
  --Reduced Veterans Administration Benefits.--Capitation of Veterans 
        Administration addiction treatment benefits have caused many 
        veterans with alcohol and drug problems to seek treatment in 
        other, non-VA programs.
  --Reduced General Support Funding.--Fewer individuals are eligible 
        for Medicaid coverage that pays for general health care 
        services. When individuals without Medicaid enter alcohol and 
        drug treatment and require medical care, alcohol and drug 
        treatment programs pay for the cost of the client's medical 
        care by using general support funds that are not specifically 
        earmarked for alcohol and drug treatment. This reduction in 
        general support funding results in programs relying more 
        heavily on funds dedicated expressly to treatment to provide 
        alcohol and drug treatment services. These dedicated funds 
        include the SAPT Block Grant.
  --Lack of Managed Care Coverage.--Commercial managed care companies 
        frequently deny coverage for alcohol and drug treatment, 
        forcing individuals and families to seek treatment in the 
        publicly funded alcohol and drug treatment system.
    These funding and benefit reductions place increased pressure on 
the SAPT Block Grant to provide support for alcohol and drug treatment 
services. Increased fiscal year 2000 funding, especially for the SAPT 
Block Grant, is necessary in order for Pennsylvania to expand access to 
alcohol and drug treatment services, which save both lives and money.
    Pennsylvania also has developed effective community-based 
prevention services that reduce the onset of alcohol and drug use among 
youth and other vulnerable populations. However, decreasing Safe and 
Drug Free Schools State Grants program funding will adversely impact 
many of these programs, requiring cuts in prevention services for 
youth. Supporting programs that focus on school safety are essential, 
especially given the most recent episode of school violence in 
Colorado. However, youth across the nation, especially middle-school 
youth, continue to use drugs at high rates. Increasing funding for 
effective, community-based alcohol and drug prevention programs is 
critical, and the State Grants program in the Safe and Drug Free 
Schools and Communities Act is a vital resource for these services.
                            recommendations
    For programs to supply these essential services in Pennsylvania and 
throughout the nation, we need your support. We urge Congress to adopt 
the following increases in fiscal year 2000 funding for alcohol and 
drug treatment, prevention, and research programs in the Substance 
Abuse and Mental Health Services Administration (SAMHSA), Department of 
Education, and National Institutes of Health. These are wise 
investments that will provide desperately needed services in 
communities across the country:
  --$1.885 billion for the Substance Abuse Prevention and Treatment 
        Block Grant to continue last year's initiative to close the 
        treatment and prevention gap.
  --$255 million each for the Center for Substance Abuse Treatment 
        (CSAT) and the Center for Substance Abuse Prevention (CSAP), 
        including CSAP's High Risk Youth program, to support Targeted 
        Capacity Expansion programs that provide targeted, gap filling 
        services and infrastructure tailored to address specific and 
        emerging drug epidemics and/or underserved populations, and to 
        support the continued translation of research into best 
        practice through Knowledge Development and Application 
        programs.
  --$656 million for the Safe and Drug Free Schools and Communities Act 
        program, with any increased funding allocated to the State 
        Grants program to support local, community-based prevention 
        initiatives.
  --$338 million for research at the National Institute on Alcohol 
        Abuse and Alcoholism (NIAAA) and $765 for research at the 
        National Institute on Drug Abuse (NIDA).
 treatment and prevention reduce alcohol and drug use and have public 
                                support
    Numerous studies have demonstrated the effectiveness of treatment 
and prevention in reducing alcohol and drug use. The National Treatment 
Improvement Evaluation Study (NTIES) evaluated CSAT's demonstration 
programs and found sustained reductions in drug use. Drug use declined 
by 51 percent for crack, 55 percent for cocaine, 47 percent for heroin, 
and 50 percent for marijuana for the 5,700 clients studied one year 
after completing treatment. NTIES also found a 78 percent decrease in 
violent crime, 19 percent increase in employment, and 11 percent 
decrease in welfare dependence.
    Prevention also has been shown to be effective in reducing use. A 
1997 NIDA study found that research-based prevention programs 
significantly reduce youth alcohol and drug use. A 1995 Cornell 
University study of 6,000 junior high students in New York State found 
that students who participate in school-based prevention programs are 
40 percent less likely to use alcohol and drugs than those who did not 
participate.
    Treatment has been repeatedly shown to be cost-effective. A 1994 
California study found that each $1 invested in substance abuse 
treatment and prevention saves taxpayers $7; a 1996 Oregon study 
determined the return to be $5.60 for every $1 invested.
    The public recognizes the value of treatment and prevention 
services. A 1995 Gallup poll found that 77 percent of Americans favored 
increased spending for alcohol and drug treatment services. Police have 
echoed the public's support for treatment. In a March, 1996 poll, 300 
police chiefs from around the country ranked drug abuse as the most 
serious problem in their communities--more serious than domestic 
violence, burglary and theft, or violent crime. Large-city police 
chiefs have repeatedly identified the shortage of treatment programs as 
the most serious limitation in their ability to address drug problems 
successfully.
              closing the treatment gap in our communities
    Access to alcohol and drug treatment does not meet the current need 
for services. Only 50 percent of the individuals who need treatment 
receive it.\1\ Waiting lists for alcohol and drug treatment are six 
months long in some regions.
---------------------------------------------------------------------------
    \1\ Woodward, A., Epstein, J., Gfroerer, J., Melnick, D., Thoreson, 
R., and Willson, D. ``The Drug Abuse Treatment Gap: Recent Estimates.'' 
Health Care Financing Review, Vol.18, Number 3. Spring, 1997.
---------------------------------------------------------------------------
    Recent entitlement reforms will shrink existing alcohol and drug 
treatment and prevention services significantly at a time when more 
services will be required. Welfare reform has reduced treatment 
availability by making individuals convicted of drug felonies after 
August 22, 1996 ineligible for cash assistance or food stamps in many 
states. Residential treatment programs, particularly programs serving 
low-income women and children, have relied on the these funds to help 
support room and board costs of care. Without these funds, treatment 
availability will decrease.
    Welfare reform also requires states to move individuals from 
welfare to work within a given time period, or a state's federal 
welfare funding will be decreased. Several national studies have 
concluded that 16-20 percent of welfare recipients have alcohol and 
drug problems. This could translate into an additional 400,000--
1,000,000 adult welfare recipients needing treatment to move into 
recovery, off welfare, and into jobs.
    Loss of Supplemental Security Income (SSI) support for individuals 
with alcohol and drug problems also has increased the need for public 
treatment services. On January 1, 1997, an estimated 200,000 
individuals with alcohol and drug disabilities lost their SSI and 
Medicaid coverage. Less than 60,000 of these individuals have 
requalified for SSI and Medicaid under another disability. Residential 
and outpatient programs have relied on Medicaid to provide treatment. 
These programs now face budget gaps which reduce treatment 
availability.
          increased investment in prevention programs required
    To reverse the trend of increased alcohol and drug use by youth, 
especially middle-school aged youth, Congress must increase its 
investment in community-based prevention programs. The ``1997 National 
Household Survey'' reported increased drug use by youth, ages 12-17, 
despite the fact that drug use among the overall U.S. population 
remained flat between 1996-97. Current illicit drug use increased by 75 
percent for youth ages 12-13, rising from 2.2 percent to 3.8 percent. 
In 1997, 4.8 million youth ages 12-20 engaged in binge drinking, 
including 2 million youth who are heavy drinkers.
    To effectively address this important problem, further expansion of 
community-based prevention programs must occur. Every adolescent should 
have access to alcohol and drug prevention services, however this is 
not the case nationwide. To provide universal access to effective 
prevention services increased funding of community-based prevention 
programs is essential.
 drug and alcohol treatment, prevention, and research funding must be 
                                expanded
Substance Abuse Prevention and Treatment Block Grant--SAMHSA/CSAT
    The majority of SAMHSA's funding for drug and alcohol treatment and 
prevention is sent directly to states through the Substance Abuse Block 
Grant. The Block Grant is the primary source of federal funding for 
alcohol and drug treatment and prevention services, accounting for over 
40 percent of public funding for these services nationwide.
    To help meet the pressing need for alcohol and drug treatment and 
prevention services, we urge Congress to fund the Block Grant at $1.885 
billion for an overall increase of $300 million over fiscal year 2000 
funding.
SAMHSA/CSAT & CSAP--Balancing the Knowledge Development and Application 
        (KDA) Program with the Need to Target Services to Underserved 
        Populations and Emerging Drug Epidemics
    Funding at the Centers for Substance Abuse Treatment and Prevention 
should be directed toward two major activities: Knowledge Development 
and Application (KDA) and services capacity expansion for populations 
at high risk or which have increased need for treatment and prevention 
services. Targeting service funding allows CSAT and CSAP to meet the 
evolving needs of communities by providing targeted, gap filling 
services and infrastructure tailored to address specific and emerging 
drug epidemics and/or underserved populations (e.g., methamphetamine, 
heroin, designer drugs, adolescents, specific racial and ethnic groups, 
ex-offenders, homeless persons, and women on welfare.)
    Investment in the application of research findings is also a key 
Federal responsibility, and CSAT and CSAP, as the lead Federal agencies 
in treatment and prevention, are singularly equipped to translate 
research findings into best practices for treatment and prevention 
programs.
    For fiscal year 2000 we urge Congress to appropriate $255 million 
each for CSAT and CSAP, an $83 million increase for CSAT and a $88 
million increase for CSAP, including CSAP's High Risk Youth program.
Safe and Drug Free Schools and Communities Act--Department of Education
    As I discussed earlier, research has demonstrated that school-based 
prevention programs that focus on personal and refusal skills 
development can significantly reduce alcohol and drug use. The Safe and 
Drug Free Schools program also provides critical intervention services 
by supporting student assistance programs that refer students who are 
beginning to use alcohol and drugs to appropriate services. These early 
intervention programs, which have no other source of federal funding, 
are critical to reaching youth at high risk early.
    For fiscal year 2000 we urge Congress to appropriate $656 million 
for the Safe and Drug Free Schools and Communities Act program, a $90 
increase over fiscal year 1999, and we recommend that the entire 
increase be directed into the States Grants program which supports 
local community prevention programs.
Basic Research--NIH/NIAAA & NIDA
    Research into the causes, costs, and ``cures'' of alcoholism and 
drug dependence is an important component of our field's continuum. 
This past year NIDA scientists have observed biochemical changes in the 
brain stimulated by drug use with Positron Emission Topography (PET) 
and scientists at NIAAA have been making great strides in genetic 
research relative to alcoholism. These breakthroughs have demonstrated 
that alcoholism and drug dependence research hones our knowledge about 
addiction and improves our ability to treat and prevent it.
    We believe more resources are needed to ensure adequate research 
attention. We urge Congress to appropriate $338 million for NIAAA, a 
$78 million increase, and $765 million for NIDA, a $162 million 
increase.
                               conclusion
    Alcoholism and drug dependence continue to be among our Nation's 
most serious and costly health problems. The programs I have discussed 
are the first line of defense to protect our children from developing 
drug and alcohol problems, as well as the funding source of last resort 
to treat Americans who have already developed these problems. As a 
society, we must keep these programs strong. Thank you.
                                 ______
                                 
        Prepared Statement of the Brain Injury Association, Inc.
    The Brain Injury Association, Inc. (BIA) respectfully requests $15 
million in fiscal year 2000 for the Traumatic Brain Injury Act (TBI 
Act). BIA is the only national, non-profit organization dedicated to 
improving the quality of life of persons with brain injury and their 
families. BIA is composed of individuals with traumatic brain injury, 
their families, and the professionals who serve them. BIA's mission is 
to create a better future through brain injury prevention, education, 
research and advocacy. BIA urges your support for funding to continue 
the critical work being done under the TBI Act. The Act, Public Law 
104-166, is the first nationwide attempt to discern the extent of brain 
injury in this country and to assist states in providing services 
specific to persons with brain injury.
    The TBI Act defines TBI 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. TBI can also result in the disturbance of behavioral or 
emotional functioning.
    Today, TBI is 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. TBI can strike anyone--infant, youth or elderly person--without 
warning, and often with devastating consequences. TBI affects the whole 
family and often results in huge medical and rehabilitation expenses 
over a lifetime.
    An estimated 2 million Americans experience TBI each year. About 
half of these cases result in at least short-term disability, and 
50,000 people die as a result of their injuries. Each year, 
approximately 230,000 persons require hospitalization for TBI (30 
percent of which show disabilities a year post injury), and over 1 
million people receive emergency medical care for TBI. BIA estimates 
the cost of TBI in the United States at more than $48 billion annually. 
Every year about 80,000 people sustain severe brain injuries leading to 
long term disability. Through the TBI Act, the Center for Disease 
Control and Prevention (CDC) has estimated that there are 5.3 million 
persons living with long term, severe disability as a result of brain 
injury and as many as 6.5 million person living with some form of 
injury including mild and moderate brain injuries. CDC notes that these 
are conservative estimates.
    The TBI Act was enacted ``to provide for the conduct of expanded 
studies and the establishment of innovative programs with respect to 
traumatic brain injury.'' Under the law, the Centers for Disease 
Control and Prevention (CDC) is responsible for activities related to 
assessing the incidence of traumatic brain injury, conducting 
prevention research and increasing awareness of TBI; the Maternal and 
Child Health Bureau (MCHB) under the Health Resources and Services 
Administration (HRSA), is responsible for implementing a TBI State 
Demonstration Program; and the National Institutes for Health (NIH) has 
been delegated the responsibility of conducting basic and applied 
research and holding a consensus conference.
             i. cdc surveillance, education and prevention
    The TBI Act authorized CDC to support studies in collaboration with 
State and local health-related agencies to: (1) determine the incidence 
and prevalence of traumatic brain injury; and (2) develop a uniform 
reporting system under which States report incidents of traumatic brain 
injury. To date, the CDC has published TBI surveillance methods and 
guidelines for public health purposes and funds fifteen states \1\ 
creating a multi-state, uniform reporting system to provide nationally 
representative data to define groups at higher risk, causes and 
circumstances of injury, and outcomes of injury. This information is 
critical in the planning, implementation, and evaluation of programs 
for preventing TBI and any accompanying disabilities.
---------------------------------------------------------------------------
    \1\ Alaska, Arizona, Arkansas, California, Colorado, Louisiana, 
Maryland, Minnesota, Missouri, Nebraska, New York, Oklahoma, Rhode 
Island, South Carolina, and Utah.
---------------------------------------------------------------------------
    CDC's population based surveillance activities have provided the 
data for the epidemiologists and statisticians to estimate the 
incidence and prevalence of brain injury in this country. As CDC's 
estimates become more refined, the numbers of persons sustaining long 
term disabilities as a result of brain injury are increasing 
tremendously. Data from 1996 shows that the number of persons with 
brain injury exceeds 10 percent of all persons with disabilities in the 
United States. It is frequently noted that there are 54 million 
Americans with disabilities--yet estimates of persons living with long 
term severe disabilities as a result of brain injury have increased in 
the past two years from 4.5 million Americans, to 5.1 million to 5.3 
million. These increases are based solely on better data and analysis, 
not an increase in the actual incidence of brain injury.\2\ CDC also 
estimates, conservatively, that 6.5 million Americans live with some 
form of disability as a result of brain injury. Improving the accuracy 
of these estimates by conducting surveillance in several additional 
states is crucial to understanding the impact brain injury has on the 
nation's medical and rehabilitative systems and accompanying costs, 
educational institutions, lost income and productivity, and the 
immeasurable toll on family members and all persons sustaining brain 
injury.
---------------------------------------------------------------------------
    \2\ The incidence of TBI, 2 million per year, has remained 
relatively constant, however, due to improvements in the nation's 
trauma systems and medical advances, more people are surviving 
devastating traumas.
---------------------------------------------------------------------------
    CDC can help address the consequences of TBI by expanding patient 
follow-up registries. There is a strong need to determine long-term 
disabilities and related problems (e.g. depression, anxiety, 
unemployment) from TBI; the health and lifelong social services and 
supports which persons with TBI need, have been referred to, and have 
received; discover how to predict which TBI patients will need ongoing 
medical treatments, rehabilitation programs, and other services; and 
discover ways to prevent secondary conditions and disabilities.
    In addition, the CDC is directed to conduct research into 
identifying effective strategies for the prevention of brain injury, 
implementing public information and education programs for the 
prevention of brain injury, and broadening public awareness of the 
health consequences of such injury. CDC has drafted a brochure for 
persons with mild TBI who are treated in emergency departments, which 
discusses potential problems they may encounter and how to identify 
services. With additional funding the brochure can be widely 
distributed and other public awareness efforts can be initiated.
    For fiscal year 1999, approximately $3 million was appropriated for 
CDC's work under the TBI Act. CDC has used most of this funding on its 
incidence and prevalence studies; we respectfully request an increase 
of $2 million for education and prevention programs. Funding of $5 
million for fiscal year 2000 is necessary to continue CDC's 
surveillance and long-term outcomes work, as well as to implement 
effective education and prevention activities.
             ii. hrsa/mchb tbi demonstration grants program
    Congress authorized the HRSA to provide grants to States for 
demonstration projects to improve health and other services for persons 
with traumatic brain injury. HRSA directed the MCHB to administer this 
program. The TBI Demonstration Grants are intended to help States 
implement statewide systems that ensure access to comprehensive and 
coordinated TBI services for the 5.3 million persons with long-term 
disabilities and their families. Under the TBI Act, these projects are 
to involve all relevant disciplines, organizations and consumers.
    In order to receive a grant, states must make available, in cash, 
non-federal contributions toward the costs of their programs in an 
amount not less than $1 for each $2 of federal funds provided under the 
grant. While a number of states have had difficulty in raising their 
share before applying for such grants, a significant number of states 
were able to do so and applied, but insufficient federal funds were 
available to fund them. BIA expects this to be the case again as states 
begin in the next few weeks to apply for grants with fiscal year 1999 
TBI Act funds ($5 million).
A. State planning grants
    In fiscal year 1998, MCHB made twelve planning grants to states in 
need of assistance in establishing the necessary infrastructure core 
capacity components before developing an implementation plan.\3\ Nine 
of these states had received planning grants in fiscal year 1997. 
Awards ranged from $38,000 to $75,000. Four core capacity components 
were identified as the essential elements in any plan for state 
implementation of TBI services. These grantees are developing statewide 
TBI advisory boards; designated state agency and staff position 
responsible for TBI activities; 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 individual TBI.
---------------------------------------------------------------------------
    \3\ Delaware, the District of Columbia, Illinois, Maryland, 
Michigan, Nevada, New Hampshire, Oklahoma, South Carolina, Texas, 
Virginia, and Wisconsin.
---------------------------------------------------------------------------
B. State implementation grants
    MCHB made eleven implementation grants in 1998, to help states move 
toward systems that assure access to comprehensive and coordinated 
services for individuals with TBI.\4\ The implementation grants require 
states to establish interagency linkages; education and training for 
persons with TBI and their families; data collection to track programs, 
resources and enhance program evaluation; develop materials for low 
literacy and culturally or ethnically distinct populations; develop a 
pre-discharge model to be used in acute care sites in the development 
of long term resource plans for individuals with TBI; and develop a 
model to coordinate financial resources to provide services that most 
effectively meet the needs of persons with TBI.
---------------------------------------------------------------------------
    \4\ Alabama, Arizona, Florida, Georgia, Iowa, Minnesota, Missouri, 
New York, North Carolina, Ohio, and Oregon.
---------------------------------------------------------------------------
    In fiscal year 1999, $5 million was appropriated for this program. 
In order to allow new states to apply for planning grants and move 
participating states into the implementation phase, we respectfully 
request an increase of $2 million for this program. To maintain the 
continuity of these projects, it is necessary that $7 million be 
appropriated for fiscal year 2000.
  iii. nih consensus conference and the need for applied research by 
                                 nidrr
    The TBI Act directed the National Institutes of Health (NIH) to 
conduct a consensus conference on TBI. In October 1998, the NIH held 
such a conference regarding managing traumatic brain injury and related 
rehabilitation concerns. Conference participants evaluated the 
scientific data concerning rehabilitation practices for adults with 
TBI. Particular emphasis was placed on rehabilitation of cognitive, 
behavioral, and psychosocial difficulties associated with mild, 
moderate and severe TBI. The Conference found recurring themes from a 
detailed review of the evidence-based scientific evaluations of 
cognitive and behavioral rehabilitative interventions, but noted that 
scientific evidence is based on limited studies that need replication, 
larger clinical trials and more definitive investigation. In essence, 
the consensus is that more research needs to be done particularly 
applied research. In addition, it has become clear that extensive 
research is needed regarding lifelong issues for children with TBI and 
their families.
    The TBI Act had also directed NIH to identify common therapeutic 
interventions used for the rehabilitation of individuals with brain 
injuries and to develop practice guidelines for the rehabilitation of 
traumatic brain injury at such time as appropriate scientific research 
becomes available. BIA strongly believes that basic brain injury 
research (i.e. laboratory studies) should be conducted by the NIH, 
however there is a more compelling need for applied research (using 
human subjects) which should be conducted through the National 
Institute on Disability Rehabilitation Research (NIDRR) in the 
Department of Education. NIDRR administers TBI model systems of care, 
and with additional funding specific rehabilitation research and 
training centers and rehabilitation engineering centers can best 
conduct applied brain injury research in coordination with that 
program. $3 million is needed for applied brain injury research to be 
conducted by NIDRR in the Department of Education.
    BIA respectfully requests $15 million in fiscal year 2000 for the 
Traumatic Brain Injury Act ($5 million for CDC, $7 million for HRSA, 
and $3 million for NIDRR in Dept. of Ed.)
                                 ______
                                 
   Prepared Statement of Jerry Boswell, National Spokesman, Citizens 
                       Commission on Human Rights
    Hon. Chairman Specter and members of the subcommittee: The Citizens 
Commission on Human Rights applauds your decision to hold this historic 
hearing. Without public scrutiny, the dangers of death and injury from 
restraint go on unhindered, and the cries of American children who have 
died in brutal restraints go unheeded. Your courage in opening this 
issue for possible legislative remedy is most appreciated.
    Our organization was established in 1969 by the Church of 
Scientology and the acclaimed psychiatric critic, psychiatrist Thomas 
Szasz. Our purpose is to investigate and expose psychiatric violations 
of human rights. We have extensive experience in investigating tragic 
deaths in relation to restraints in psychiatric hospitals and other 
facilities.
    Our own investigations have shown that death by restraint is a 
horrible tragedy, and that it is rarely investigated appropriately by 
local law enforcement, or prosecuted. In the majority of cases 
investigated by CCHR, the death was caused by asphyxiation, or bluntly, 
strangulation. An attached document by our Medical Expert, Moira Dolan, 
MD, an Austin, Texas Internal Medicine specialist, reviews the medical 
literature on such deaths, and clearly shows that asphyxiation is the 
most commonly reported cause (See attached). The last moments of the 
lives of some of the children our investigations have scrutinized have 
been particularly horrifying.
                           roshelle clayborne
    Roshelle Clayborne, a 16 year old resident at Laurel Ridge 
psychiatric hospital in San Antonio, Texas, became involved in a 
struggle with staff one day in August, 1997. A government report from 
the State of Texas (see attached) states: ``Staff failed to protect the 
health, safety, and well-being of [Roshelle] during her restraint and 
seclusion. [Roshelle] stated several times during the restraint that 
she could not breath. She also defecated and urinated during the 
restraint. Within minutes of being given a fifty milligram shot of 
Thorazine she became `unresponsive,' `limp,' `quiet,' `still,' 
`unconscious,' `lax.' Despite these atypical behaviors staff failed to 
respond to her physical and medical needs. [Roshelle's] immobilized 
body, soiled with feces and urine was placed onto a blanket and 
transported to locked seclusion. When [Roshelle] was observed she was 
found in the same position in which she was left. The LVN and a staff 
member went in to check on her and found her without a pulse and not 
breathing. CPR was not immediately initiated. An RN who responded to 
the Code Blue started CPR when she arrived on the scene.''
    When interviewed by a government investigator, one staff member on 
the scene of Roshelle's restraint said, ``This is the way we do with 
[Roshelle]--boom, boom, boom--PRN's and restraints and sending her to 
seclusion room.'' Other staff also stated that ``moving a resident 
directly from restraint to seclusion was `routine,' `procedure,' `just 
the next step that's taken,' the `automatic' thing to do.''
    The ``automatic'' thing to do was done to Roshelle's roommate only 
two weeks after her death. Lisa Allen, also 16 years old at the time, 
underwent the same restraint by the same workers in the same hospital. 
As if to prove the idea that their routine was automatic, ``Boom, boom 
boom'', Lisa went into restraint, received Thorazine, and was put in 
locked seclusion. Her parents feared for her life, and once they 
brought their concerns to us, we forwarded information on her treatment 
and Roshelle's death to the state of Indiana, where she was from. State 
workers arrived within days to get her out of the facility and back to 
Indiana, alive. Her roommate Roshelle had not been so fortunate.
    At the end of Texas' state investigation into her death, under a 
section of the official report entitled PLANS FOR FOLLOW-UP, the 
investigator wrote, ``No plans for follow up. Recomendation [sp] for 
revocation of license.'' The hospital appealed the State's attempts to 
repeal their license, and remains open to this day. The local 
prosecuting attorney refused to bring criminal charges against anyone 
involved. This lack of action against facilities and personnel involved 
is consistent with other similar incidents nationally.
                              edith campos
    A police report from Tucson, Arizona dated February 2, 1998 says 
that Edith Campos was 15 years old, 5 foot 5 inches, 120 pounds and 
``slim'' the day she died at Desert Hills psychiatric hospital. The 
report reveals that psychiatric tech Dan Walsh, a 34 year old man, and 
Edith got into an argument over a personal photograph. After supposedly 
cursing at Walsh, Edith ``raised her fist as if she were going to hit 
Walsh.'' What follows is an amazing interaction between a 34 year old 
adult man and a 15 year old child. ``He restrained her [and] placed her 
on the floor where she was held as she yelled [and] resisted for about 
10 [minutes]. After Campos became quiet she was helped into a sitting 
position. By this time reportee [Mike Segura, the maintenance man] had 
arrived [and] commented that Campos didn't look good. Nurse Linda Wons 
was called in [and] found Campos `trance like.'''
    The psychiatric hospital Edith Campos was at remains open, although 
investigation of sexual conduct by a facility employee has led to the 
county announcing plans to pull out 38 children whom they had placed 
there. After a hearing last May to determine if Dan Walsh should face 
criminal charges over Edith's death, Walsh was let off. So, as in 
Roshelle's case, no real sanctions were brought about as a result.
 pattern of abusive restraints at a brain injury rehabilitation center
    One facility we investigated in 1997-98 was a brain injury 
rehabilitation center in the Texas countryside owned and run by a 
psychiatrist. Their use of physical restraints of patients is now the 
subject of a lawsuit by the Texas Attorney General's office (see 
attached copy). The lawsuit states that at Tangram Rehabilitation 
Network, ``abusive behavior exhibited by the staff included pushing 
residents to the ground and holding them down, punching and slapping 
residents in the face, grabbing residents by the hair, and grabbing a 
resident by the throat to make him spit out what he was eating. Forms 
of verbal intimidation included threats to ``show him who the boss 
is,'' telling residents to ``suck it up . . . get moving,'' and ``If 
you tell anybody, it will be worse.''
    As in many cases, we are concerned that self reports of activities 
that occur in restraint by hospital employees are exaggerated. In the 
Tangram lawsuit, a revealing passage states, ``In another incident, 
Employee L revealed that she was having trouble with Client #9 in the 
shower of the dormitory and she had to restrain the client. Employee L 
called for help and Employee N arrived first. Employee N took charge of 
the Client #9's upper body and Employee L restrained the client's legs. 
Employee L reported that, while Client #9 was being restrained on the 
shower room floor she observed Employee N grab the client by the hair 
and strike the client's face on the concrete floor. The facility's 
report of this incident reflects that Client #9 became a threat to 
others and was placed in a prone restraint. The report states further 
that the resident continued to struggle and struck her head. Client #9 
sustained bruising and swelling to right eye and a 2'' diameter scrape 
above eyebrow.''
    In this case, three employees are facing criminal charges, and the 
facility is under litigation brought by the state. The difference in 
this case is that there were detailed and lengthy investigations of the 
circumstances conducted by trained law enforcement officers. Multiple 
interviews by law enforcement with staff and residents revealed a 
pattern of abuse that could be prosecuted. The state was able to gather 
evidence through these multiple interviews which mirrors the type of 
data that federal legislation seeks to gather: information on how often 
restraints are used, and how often deaths and injuries occur as a 
result of a restraint procedure.
           a monetary incentive behind the use of restraints
    A special report by 60 Minutes on April 21, 1999 showed undercover 
video footage of the internal workings of a private psychiatric 
hospital. Workers there used restraints on children for the minor crime 
of yelling and screaming, and for ``behavioral problems'', minor 
troubles hardly worthy of restraint, especially considering that the 
facility was still in trouble for a recent death of a child in 
restraint. The workers also discussed the fact that the ``negative'' 
aspects of a child's behavior and treatment needed to be highlighted in 
their medical records, in order to justify their continued 
hospitalization. Were restraints being used on patients to show a 
negative course of treatment, requiring longer hospitalization and 
better reimbursements for the hospital? If so, is this rationale being 
used in private psychiatric hospitals and other psychiatric treatment 
centers nationally?
    In answer to this question, a report by CCHR International cited 
Kenneth Clark, M.D., a Harvard College graduate and psychiatrist, who 
stated, ``Regarding reimbursement rates for patients placed in 
restraints--I know that if they say a patient is uncontrollable the 
patient is then transferred to the Psychiatric Intensive Care Unit 
(PICU). The daily rate is higher, so there is a rate increase when the 
patient is in restraints as the patient obviously needs more intensive 
care. I know there were instances where the patient was aggravated or 
provoked to justify the use of restraints and this placement. The staff 
at the hospital where I worked referred to the practice as 19Mayhem 
Therapy.' I don't have exact figures but I do know that it cost more 
than a thousand dollars a day for a patient for this. This estimate is 
probably on the low side.''
    A brief scan of the internet turned up two psychiatric rate 
schedules which prove the point that a psychiatric hospital can make 
more money for a patient that restraints are used on. One hospital 
advertised standard care as costing $550 to $575 per day, while 
Intensive care cost $650 per day. Another facility promoted the fact 
that in their psychiatric intensive care unit, restraints and seclusion 
are included in their treatment.
    An employee from a Texas residential psychiatric treatment facility 
stated the following during an interview: ``You keep up the incident 
reports [reports of restraints used or other major incidents that have 
occurred] because the insurance company wants to know the progress. You 
have a catch 22 in that the insurance won't keep the client there if 
there isn't some progress, so you have to show some progress, and then 
if you have a lot of agitation, then you can say that because he has 
become more difficult, his care has gone from $5,000 to $9,000 per 
month. That was done.''
    The fact that there may be a correlation between the use of 
restraints and seclusion, and reimbursement at a higher rate for such 
patients, needs to be seriously examined and if need be, amendments 
made to the proposed legislation to deter such practices.
                              conclusions
    Our investigations and research has led us to conclude that any 
legislation to be effective in halting the use of ``deadly restraints'' 
would include the following elements:
    1. Reporting by each facility to the government of the numbers of 
times restraints, chemical restraints, and seclusion are used to 
control patients.
    2. Reporting by each facility to the government each time an injury 
or death occurs in restraint or in relation to the prior use of a 
restraint.
    3. All deaths and injuries related to restraint should be 
thoroughly investigated by law enforcement officers. Law enforcement 
should be called in immediately to preserve the ``chain of evidence'', 
and the scene should be treated as a crime scene for purposes of 
investigation.
    4. Facilities should be legally responsible for ensuring the full 
training of their staff in proper restraint techniques. Restraints 
should be limited to use only in last resort emergencies to prevent 
assault or harm. Facilities which do not comply with these measures 
should be held criminally liable for deaths or injuries that occur in 
restraint.
    5. The prescribing of ``standing orders'' or ``PRN's'' by 
psychiatrists for restraint, chemical restraint, or seclusion should be 
specifically outlawed.
    6. The connection between the use of restraints and increased 
reimbursements for psychiatric facilities should be explored, and the 
use of restraints in order to increase reimbursement levels should be 
specifically outlawed.
    Once again, I would like to express my gratitude to Senator Specter 
and the rest of the Subcommittee members for bringing up this vitally 
important topic for a hearing. Your efforts and the results of your 
hearing will go a long way toward ending the psychiatric abuse of 
thousands of Americans in the form of ``deadly restraints.''
                                 ______
                                 
   Prepared Statement of Theodore Pasinski, President, St. Joseph's 
                         Hospital Health Center
    Mr. Chairman and Members of the Subcommittee, thank you for the 
opportunity to present this testimony. I am Theodore Pasinski, 
President of St. Joseph's Hospital Health Center in downtown Syracuse, 
New York. St. Joseph's is a non-profit 431-bed hospital and health care 
network providing services to Onandaga County and to patients from 15 
surrounding counties. St. Joseph's is best known for its ranking as the 
#1 hospital in New York State for open heart surgery in terms of lowest 
overall mortality rate. We are very proud of this ranking, which we 
have held for three consecutive years. What many people do not know is 
that we are also the largest hemodialysis center outside metropolitan 
New York. My statement today is focused on these two areas of expertise 
at St. Joseph's and how we plan to initiate a chronic disease 
management model that will benefit our current patients with heart and 
kidney disease and enhance the quality of life for at-risk patients in 
the region. We see this initiative as one with not only health 
enhancement benefits but also with significant positive economic 
implications for the community and the region. I will explain this 
dynamic in general terms for the Subcommittee.
    St. Joseph's provides over $7 million in bad debt and charity care 
to our service region. This comes to about 4 percent of our operating 
budget. This number has steadily risen over the years and we feel it 
will continue to do so unless some dramatic steps are taken. In order 
to increase access to patients who are underserved and at-risk for 
disease, we have implemented a program of ``patient-centered care.'' We 
believe we achieved our #1 ranking for cardiac care through this 
process, which employs a secondary prevention model for disease 
management. By applying a multidisciplinary team approach to heart 
disease and preparing patients before surgery and rehabilitating them 
after, we have reduced mortality rates as well as the number of second 
hospitalizations. We have done this to improve the overall health of an 
underserved and underinsured patient base, but also for practical 
financial reasons. While our rehabilitation and education programs for 
our cardiac patients are largely unreimbursed, we are rewarded by 
having to perform less expensive charity care on patients who would 
typically end up back in the hospital without disease management.
    Recognizing that early assessment is important to reducing the 
number of expensive treatments required later in life, St. Joseph's 
instituted a Wellness Place at a local mall so that people could stop 
in at their convenience. The Wellness Place provides free, general 
health screenings such as blood pressure readings, cardiac and diabetes 
risk assessment, counseling and patient education and seminars. Last 
year, approximately 15,000 people used the Wellness Place. Nearly 1000 
of these people were determined to be at risk for heart disease, 
diabetes, or vascular problems. These individuals were offered follow-
up services intended to change lifestyle, such as nutritional 
counseling, smoking cessation, exercise programs and other similar 
regimens. They were also offered a choice of primary care physician if 
none was identified. This is all done at considerable unreimbursed 
expense to St. Joseph's but with the knowledge that a great deal of 
money will be saved in the long run--for the patient, the Medicare 
system and the hospital. The most dramatic economic implications I 
mentioned are encompassed within this concept--but not all. At risk 
patients are working people who may lose jobs if their disease 
progresses. It is important to realize, however, that patients with 
diagnosed diseases or who have congestive heart failure, may still work 
and lead productive lives if an effective disease management program is 
initiated at the earliest stage possible.
    Assessment is the first line of defense in chronic disease 
management; but, there are many other factors involved after this step 
is taken. A program for management of disease must adequately educate 
patients and then foster a sense of individual responsibility for the 
importance of following prescribed regimens. This takes a great deal of 
initial monitoring and time spent with patients by telephone, at 
community health centers, and in the home. This also requires 
coordinated community participation by physicians, nurses, pharmacists, 
physical therapists, educators, behavioral specialists and even 
employers.
    Diabetes, leading to kidney disease and kidney failure, is the most 
expensive disease in the country. The second most expensive, and #1 
admitting diagnosis for Medicare, is congestive heart failure. The U.S. 
spends more than $7 billion annually in Medicare dollars for these 
diseases. The clinical relationship between chronic kidney failure and 
heart disease (e.g., high blood pressure) requires similar early 
intervention techniques as well as later management, treatment, and 
rehabilitation. Utilizing resources already developed and in place for 
our cardiac rehabilitation program, St. Joseph's is proposing to 
further develop a chronic disease management program focused on 
hemodialysis. Combining resources in this way will be cost effective 
and has the potential to radically change the management of kidney 
disease.
    The specific objectives of the program will begin with early 
identification. Timely referrals to a nephrologist can be improved so 
that more aggressive treatment can be initiated to prolong kidney 
function and allow better preparation of the patient for dialysis. 
Second, we will identify, investigate, evaluate, and implement 
technology that will promote in-center self care and home hemodialysis 
modalities. Third, we will utilize the St. Joseph's Cardiac 
Rehabilitation Model for the renal patient. This model will emphasize 
education and exercise with the goal of improving the percentage of 
patients that stay employed, reduce frequency and length of 
hospitalizations, and improve patient acceptance of and control over 
disease processes. The ultimate goal of the renal patient and the 
health care industry is to have renal patients lead a ``normal'' life. 
Currently, kidney transplantation is the modality that is most 
associated with that goal.
    Our history of service and specialization in the areas of cardiac 
and kidney disease has proven that there is a demonstrable need for a 
chronic disease demonstration in these areas for the Central New York 
region. The demonstration will involve relationships and initiatives in 
Dialysis, Cardiac Care, Home Care, and Wellness. What we lack at this 
point, is a facility that can be shared by both cardiac and dialysis 
patients. Our current dialysis facility, the largest outside the New 
York Metropolitan area, is woefully inadequate in every way. The 
facility was originally built as a modular, temporary, unit over 20 
years ago. We now treat our overload of patients in the hallways and 
have legitimate safety concerns that come with overcrowding and 
questions as to the future structural integrity of the plant itself. We 
have not replaced this facility for financial reasons but, fortunately, 
have been able to treat patients satisfactorily. We have three 
satellite clinics in the region, which are also operating at capacity. 
Our goal is to implement our demonstration program in an on-campus 
facility that will provide the space needed for dialysis, exercise 
facilities, classrooms, meeting rooms, examination rooms, and nurse and 
allied professional training space. Training of personnel is an 
important aspect of implementing an innovative chronic disease model.
    The two-story facility, equipment and program operation will cost 
approximately $12.5 million. Last year, St. Joseph's received a 
$750,000 Department of Housing and Urban Development Economic 
Development Initiative Grant. St. Joseph's seeks additional Federal 
partnership grant funding of $4.3 million that will also cover start-
up-operating costs. We estimate, based on our current services, that 
our operating budget will exceed $5.5 million per year. St. Joseph's 
will provide, through private sources, the remainder of the estimated 
total.
    We recognize the magnitude of this request but believe 
wholeheartedly that this facility, and the implementation of our 
chronic disease management model will repay this initial investment 
many times over in terms of Medicare savings and in terms of providing 
a national model for replication across the country.
    Thank you.
                                 ______
                                 
  Prepared Statement of Spencer Foreman, M.D., President, Montefiore 
                  Medical Center, the Bronx, New York
    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 Children's 
Hospital at Montefiore that we are developing.
                               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. Thirty 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 sixty percent have annual incomes below $30,000.
    The Bronx population is largely composed of historically 
underserved and uninsured minorities. Three-quarters of the Bronx 
population are non-white--28 percent African American and 50 percent 
Hispanic. The Bronx is among the nation's most underserved urban areas 
with sociodemographic and health status indicators that underscore its 
need for health services. Those health and social indicators include:
  --An infant mortality rate of 12:1 which is among one the nation's 
        highest ratios;
  --Rates of teenage pregnancy and low birth weights that 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 a 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 1960s and early 1970s 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 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 City's most 
disadvantaged. 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 are not well housed, and primary 
and specialty ambulatory services 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 embarked on a 
comprehensive initiative to tackle the daunting task of consolidating 
all of our children's services into a central location--the Children's 
Hospital at Montefiore. The new Children's Hospital will serve as a 
``hub'' of our child 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 montefiore child health initiative
    The traditional model of children's hospitals is designed for and 
focuses 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 individual's health status and his/her lifestyle 
and family life--a new model of children's hospitals has emerged.
    The Montefiore Child Health Initiative, comprised of both the child 
health services within the existing Ambulatory Care Network and the 
Children's Hospital, is a unique example of a modern and aggressive 
approach to the provision of comprehensive children's primary and 
specialized health care services.
    The Montefiore Child Health Initiative proposes a unique model of 
care that 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.
An integrated 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 
Montefiore Child Health Initiative will ensure that the Integrated 
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 
spectrum of child health and related services; access to the secondary 
and tertiary services at the Children's Hospital so that children and 
families will have the option of receiving care in an organized, cost 
effective and accountable system of care.
    The Montefiore Child Health Initiative will provide the 
consolidation and coordination necessary to effectively and efficiently 
provide a full range of services for the children and families of the 
Bronx.
    The network aspects of the 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; and
  --An extensive base of privately practicing pediatricians throughout 
        the Bronx and Westchester.
    The ``front door'' to the planned Children's Hospital, the core of 
the Montefiore Child 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 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 Hospital 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 also address 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;
  --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.
Pediatric Asthma Center
    A dedicated center for the diagnosis and treatment of childhood 
asthma is a major focus of the Montefiore Child Health Initiative. The 
concept of the Pediatric Asthma Center stemmed from the disturbing 
statistics about childhood asthma in the Bronx:
  --Almost 9 percent of children in the South Bronx have asthma (4.3 
        percent nationally).
  --African American children are three times more likely than white 
        children to be hospitalized for asthma, and four to six times 
        more likely to die from it.
  --Rates for Latino children are also higher than those for white 
        children.
  --More than five times as many children in the Bronx are hospitalized 
        for asthma compared with national rates.
  --In the South Bronx, the rate is 7.5 times the national rate, and 
        more than twice the rate of New York City overall.
    The Pediatric Asthma Center will establish a state-of-the-art 
clinical and educational resource center as well as a community-wide 
network of services for children and families linked directly with 
schools and day care programs. The Center's services will provide 
school-based education and pediatric care for children with asthma, and 
will serve as a hub for a network of diagnostic and clinical services 
located in Montefiore's Integrated Child Health Network. Schools and 
day care centers will be linked to the Pediatric Asthma Center as well 
as a local network primary care site for services, training and 
educational programs. State-of-the-art technology, including diagnostic 
equipment and computer links for clinical evaluation, and support for 
school-based health care and education, will be key components of the 
Pediatric Asthma Center.
A new children's hospital
    The 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 Montefiore Child 
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.
Carl Sagan Discovery Center
    In honor of the memory of Carl Sagan, whose lifelong mission was to 
help children reach their fullest potential through an understanding of 
science in all its aspects, the Children's Hospital at Montefiore will 
create a ``Carl Sagan Discovery Center'' within the hospital. The Sagan 
Discovery Center will be a place where children can learn about their 
bodies, their world and the universe around them while being treated at 
The Children's Hospital at Montefiore. As such, the Sagan Center will 
be an integral part of the concept of ``family-centered'' care that is 
the hallmark of the Children's Hospital. Through a variety of 
innovative exhibits and learning tools, the Sagan Center will allow 
children and their families to learn more about their illnesses and 
treatment, the workings of the human body, life on earth throughout the 
ages, and the mysteries of the cosmos.
    The Carl Sagan Discovery Center will utilize interactive displays, 
the Internet, and specialized scientific equipment to provide these 
learning experiences. This equipment will include a telescope on the 
roof of the building, which will enable children to explore the wonders 
of solar system from their rooms; headphones which will afford children 
the opportunity to hear the ``winds'' of Mars via a microphone on the 
planet's surface; and computer technology which will allow children to 
take ``virtual trips'' to anywhere in the universe, as well as allow 
them to talk to fellow patients and other children.
    The implementation of the Montefiore Child 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 Montefiore Child 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.
                         funding/budget sources
    The new Children's Hospital and related facilities will cost $116 
million for capital construction. Our federal request is $20 million of 
which $2 million was provided in last year's Labor, HHS and Education 
Appropriations Bill.
                                 ______
                                 
  Prepared Statement of Eugene Pritchard, President, Condell Medical 
                        Center, Libertyville, IL
    Mr. Chairman, thank you for the opportunity to present this 
testimony for the record regarding the proposed Regional Center for 
Cardiac Health Services at Condell Medical Center, in Libertyville 
Illinois.
    As you may know, in the United States today, cardiac diseases are 
the number one killer of men and women. Everyday, more than 2,600 
Americans die of cardiovascular disease, an average of one death every 
33 seconds. Among both men and women, and across all racial and ethnic 
groups, cardiovascular disease is the number one killer in the United 
States. More than 960,000 Americans die of cardiovascular disease each 
year, accounting for more than 40 percent of all deaths nationally. In 
1998, cardiovascular diseases cost the nation an estimated $274 billion 
in medical expenses and lost productivity, including more than $50 
billion in direct Medicare and Medicaid expenditures. It is expected 
that that figure will increase to $286.5 billion in 1999.
    Over the last 20 years there has been a dramatic increase in the 
indicators of prevalence of heart disease and stroke, particularly 
among Americans over age 65--an age group that is now about 13 percent 
of the U.S. population and will constitute over 20 percent by year 
2010. Currently, almost 10 million Americans aged 65 years and older 
report disabilities caused by heart disease. Of the nearly 5 million 
patients afflicted with heart failure, 75 percent are older than 65 
years of age.
    Cardiovascular diseases are the most common cause of death in 
Illinois, accounting for an even higher mortality rate than on the 
national level. According to the National Center for Health Statistics, 
Illinois had the 10th highest 1995 death rate for heart attacks, stroke 
and other cardiovascular diseases in the nation, accounting for 101.7 
deaths per 100,000 population. Illinois also had the 12th highest rate 
of total cardiovascular diseases in the nation, at 203.7 deaths per 
100,000 population.
    In Lake County, IL, these statistics have even more profound 
implications. Today, the County has a higher incidences of heart 
disease, cardiovascular disease and chronic obstructive pulmonary 
disease than the State of Illinois as a whole. In fact, Lake County had 
4.6 deaths per 100,000 population from congenital anomalies versus 
Illinois' 4.2 deaths per 100,000.
    With a total population of 540,000, Lake County has a potential for 
4,452 cardiac catheterizations annually. Currently, there are four 
institutions with catheterization labs in Lake County with a combined 
total volume of only 1,675 or 38 percent of the potential volume, 
leaving a distinct cardiac health service need in the region. A primary 
reason for this discrepancy is that many patients are referred out of 
Lake County for interventional services currently unavailable anywhere 
in the County. In fact, some patients are forced to travel 90 minutes 
and more to obtain appropriate cardiac care.
    With the region experiencing a 35 percent population growth through 
2010, the need for an expanded primary and specialty health services 
infrastructure, including comprehensive cardiac care, is evident.
    The United States Congress recently announced its increased 
commitment to meeting and countering the many threats that 
cardiovascular diseases pose to the national health care system. In its 
fiscal year 1998 Report on Labor, Health and Human Services, and 
Education Appropriations, this subcommittee articulated the need to 
develop an ``integrated, comprehensive, and nationwide program that 
could effectively target cardiovascular disease and its risk factors.'' 
We here at CMC are taking steps to do identify the risk factors and 
implement a comprehensive program that will provide, education, 
prevention, diagnosis, specialty care, surgical care and rehabilitative 
cardiac care for our patients.
    Since 1927, Condell Medical Center (CMC) has been a highly 
respected comprehensive community health care, prevention and education 
resource for Lake County, Illinois. The Medical Center has grown from 
its origins as a 12-bed country hospital to a technologically 
sophisticated 190-bed acute care medical center with affiliated health 
care and educational service facilities strategically located 
throughout Lake County.
    Condell Medical Center was the first institution in Lake County to 
establish a cardiac rehabilitation program in 1978. Since then, the 
Medical Center has run a basic cardiology program including diagnostic 
and rehabilitative services at its main campus in Libertyville, IL. It 
has also provided emergency cardiac care at its main campus and its 
affiliated acute care centers located throughout the northwestern Lake 
County region. Currently, acute care centers are located in Buffalo 
Grove, Vernon Hills, Gurnee and Round Lake Beach. Condell affiliated 
medical offices are located in these centers in addition to other 
medical office buildings located in Lake Villa, Grays Lake and 
Mundelein. A focus on primary care physicians has enabled CMC to manage 
the medical needs of a large population of patients which has 
contributed to the success of its entire cardiovascular program.
    Condell offers comprehensive care to area residents from the 
initial onset of the disease through recovery and return to daily 
routine, including:
                            diagnostic care
    Opened in 1996, Condell's new centralized Cardiology Department 
began to offer diagnostic cardiac catheterization services to area 
residents. One of the first fully-digital cardiac catheterization 
facilities in the nation, the laboratory aids Condell cardiologists in 
making a more thorough diagnosis of a patient's heart status. This 
permits faster clinical decisions, increased continuity of care and 
less patient stress.
                     intensive cardiac care center
    CMC currently operates an Intensive Care Unit with staff trained to 
provide optimal patient care to those with life-threatening illnesses. 
Monitoring equipment links patients with nursing staff. The Total Care 
Team, through its interdisciplinary cooperative efforts, handles the 
most critical situations in an efficient, well-organized manner to 
produce the most effective results for the patients.
    In the cardiac care program at CMC is primarily comprised of non-
invasive diagnostic and rehabilitative care. The Medical Center 
referred patients in its primary and secondary service areas to other 
outlying hospitals for specialty cardiac surgical services. In 1997 and 
1998 a total of 240 and 343 patients respectively were referred 
directly from Condell for interventional cardiac procedures.
    The practice of referring patients for care interrupted the 
continuity of care, increased the health risk to the CMC patient, 
inconvenienced the patients and their families and broke the chain of 
care between the patient and their primary care physician. 
Additionally, the cost of care for those patients who are referred 
increases significantly due to transport costs, repetition of certain 
diagnostic tests, physician and nursing assessment during the patient 
admission to the tertiary hospital.
    In 1996, CMC established its Cardiac Catheterization Lab providing 
diagnostic cardiac catheterization services as the first step in the 
establishment of a regional center for cardiac health services. The 
catheterization lab established a quality care program with 
comprehensive peer review process and outcomes measurements.
    With the establishment of the catheterization lab in 1996 and the 
resulting increases in demand for services in 1997 and 1998, it became 
very apparent that the patients of Lake County have chosen CMC as the 
hospital-of-choice for their cardiac care.
    Today, cardiovascular disease represents 20 percent of all CMC's 
hospital admissions. In 1998, CMC ended the year with 697 
catheterizations, the largest market share in Lake County. In addition, 
the Medical Center referred 191 patients to other facilities for open-
heart surgery in 1998. When the proposed cardiac care center opens, it 
is expected that the number of cardiac care patients will increase 
significantly placing additional stress on Condell's ICU, surgical and 
ED infrastructure.
    The addition of a comprehensive cardiac health program including an 
open-heart surgery and angioplasty program will enable CMC to fulfill 
its mission of providing a full spectrum of cardiac care.
  the regional center for cardiac health services at condell medical 
                                 center
    In response to the critical need for comprehensive cardiac health 
services in Lake County, Illinois and the surrounding region, Condell 
Medical Center proposes to establish the ``Regional Center for Cardiac 
Health Services.''
    The Regional Center for Cardiac Health Services at Condell Medical 
Center is being developed as a dynamic, multi-faceted facility designed 
to bolster the Lake County region's ability to deal with the numerous 
faces of the cardiac threat in an innovative and integrated fashion. 
The RCCHS will provide a full suite of cardiovascular services 
including emergency, surgical, diagnostic, education, prevention and 
rehabilitation.
    This Center, which is part of Condell Medical Center's planned 
institution wide expansion project, will build upon existing cardiac 
expertise at the Medical Center and create a full service regional 
center that will include:
  --Cardiac Catheterization Lab (diagnostic and interventional cardiac 
        cath)
  --Echocardiography
  --Stress Testing
  --Cardiac Rehabilitation
  --Cardiac outpatient monitoring
  --EKG
  --Pediatric Cardiology
  --Cardiac ICU
  --Surgical
  --Prevention and Education
  --Rehabilitation
    The new Center will accommodate increased volume expected from the 
expanded cardiac programs, the Emergency Department and the primary and 
secondary service areas.
    The proposed program will:
  --Be clinically effective, using an interdisciplinary approach with 
        input from surgeons, cardiologists, ancillary professionals, 
        nurses, administration and importantly, patients.
  --Facilitate continuity of care from admission through discharge and 
        after-care in the home and rehabilitation.
  --Enable cardiologists to maximize patient care through decreased 
        morbidity and mortality through the use of interventional 
        cardiac procedures and on-site open-heart surgery services.
  --Provide additional suites for use in open-heart surgeries.
  --Reduce referrals out of CMC and Lake County, allowing closer ``home 
        care.''
  --Provide comprehensive cardiac care 7 days a week, 24 hours per day.
  --Locate all cardiac services adjacent to one another for increased 
        patient convenience and improved medical efficiency.
    Key components of the proposed Regional Center for Cardiac Health 
Services include:
                                surgical
    Condell Medical Center will provide for the first time in Lake 
County open heart surgery capability. It will provide suites for use 
solely as open heart surgery suites which will co-exist within the 
expanded surgical center.
                         education & prevention
    Another aspect of the proposed Regional Center for Cardiac Health 
Services at Condell Medical Center will be the education and prevention 
programs. This will entail expansion of the existing Health Promotions 
Program and Cardiac Rehabilitation Program. In addition, opportunities 
for the development of specialty services will be evaluated and 
implemented.
                          rehabilitative care
    A key element of the Regional Center for Cardiac Health Services at 
CMC will be an expanded Cardiac Rehabilitation Program, conducted at 
Centre Club. The Centre Club is the on-campus health and fitness 
facility at CMC. This program helps cardiovascular patients return to a 
safe, healthy and active lifestyle. This two-phase program combines 
education with individualized exercise prescriptions, which are closely 
monitored by highly trained staff members.
    As a key part of this initiative, CMC will also add a second 
rehabilitation program off campus at its Gurnee facility.
    The establishment of this center is also a critical component in 
the Medical Center's goal to become the County's first tertiary care 
center. Other components of that goal will be becoming a level I 
emergency department, becoming a level I intensive care unit (ICU), and 
becoming a level III OB/GYN facility.
    Condell Medical Center is seeking $7.5 million over two years for 
the implementation of its Regional Center for Cardiac Health Services. 
This proposed federal partnership in conjunction with the CMC financial 
commitment of $72.8 million will provide significant returns on the 
federal investment through faster and more effective treatment while 
helping to reduce the significant costs associated with cardiac related 
illnesses in the area.
    The proposed Regional Center for Cardiac Health Services will serve 
as a national model for the provision and effective management of 
comprehensive cardiac care in a single location for an at-risk 
population.
    This partnership, in conjunction with the CMC financial commitment 
of $72.8 million, will provide significant returns on the federal 
investment through faster and more effective treatment while helping to 
reduce the significant costs associated with cardiac related illnesses 
in the area. It will also help to reduce the very real costs associated 
with cardiac related illnesses in the region.
    Again, Mr. Chairman thank you for the opportunity to submit this 
testimony for the record. We look forward to working with the 
subcommittee as it strives to implement an effective system for 
addressing the complex issue of cardiac care.
                                 ______
                                 
           Low Income Home Energy Assistance Program (LIHEAP)
      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 40 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 2000 
appropriations for the Low Income Home Energy Assistance Program 
(LIHEAP).
    We fully support the Administration's fiscal year 2000 budget 
request of $1.1 billion for LIHEAP. APPA also supports the request for 
$300 million in emergency funds in fiscal year 2000 and $1.1 billion in 
advanced funding for fiscal year 2001. Because the majority of LIHEAP 
monies are 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 reauthorization in fiscal year 1995 
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 being 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 as retail markets are opened to 
competition. 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 their 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 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 leaving the public assistance rolls are 
entering lower paying jobs and continue to 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 2000 budget request for LIHEAP. Again, 
thank you for this opportunity to present our views.
                                 ______
                                 
 Prepared Statement of Steven R. Berg, Director of Programs, National 
                      Alliance to End Homelessness
    It should be considered intolerable that homelessness continues to 
exist in the United States. Twelve years ago, when President Reagan 
signed the Stewart B. McKinney Homeless Assistance Act, many feared 
that homelessness was a problem too complex to solve. Since then, 
however, due to incredible efforts by leaders in all sectors of society 
(including members of both parties in Congress), we know more about 
homelessness than we imagined possible; we have models for effective 
programs for rehousing homeless people with every class of problem; we 
have people in the field with the know-how and energy to put these 
solutions into practice.
    What we are missing are the resources to bring these solutions to 
scale. This is particularly the case in a small number of areas where 
real holes exist in the system of services that are necessary to 
permanently rehouse homeless people.
                          homelessness in 1999
    Local and regional reports indicate that a surge in homelessness of 
emergency proportions is occurring around the country. In Maine, 
homelessness is up 33 percent with demand exceeding capacity for the 
first time in a decade. San Diego has seen families sleeping in shelter 
lobbies, with three times as many families needing shelter in 1998 than 
in 1997. In Milwaukee, single women, many with severe problems of 
substance abuse, have overwhelmed the capacity of the shelter system 
the past two winters. In South Jersey, funds for services to homeless 
people ran dry after three quarters of 1998. In Massachusetts, at the 
end of March when shelters should be clearing out, there was not an 
empty family shelter bed to be found anywhere in the Commonwealth. Last 
December the U.S. Conference of Mayors, in its annual survey of hunger 
and homelessness, reported another year of increasing demand for 
homeless shelter space.
    Severe increases in homelessness should come as no surprise. A 
perverse effect of the good economy has been skyrocketing rents in most 
major cities, making housing less affordable for those who either can 
not work because of a disability, or who experience barriers to good 
employment, limiting them to low-paying jobs. These effects combine 
with continued long-term trends that have been pushing up homelessness 
since the early 1980s:
  --Real wages for the lowest-paid workers have remained well below 
        1970s levels.
  --Public assistance has become less available. State afterstate has 
        eliminated ``general relief'' programs for childless adults. 
        Many people with disabilities related to substance abuse have 
        been dropped from the SSI program. States' TANF programs have 
        terminated benefits to many families, and prevented others from 
        applying. Census data indicates that there were 400,000 more 
        children living in families with incomes less than one half the 
        poverty level in 1997 than in 1995. All of the growth in 
        children in extreme poverty came from families headed by women 
        with who were working some of the time. Over 40 percent of 
        homeless families receive no TANF benefits, even before time 
        limits take effect.
  --States have continued to reduce the number of inpatient beds for 
        people with mental disabilities.
    One of the most important findings of recent research is the 
existence of a relatively small number of chronically homeless, 
chronically ill people, making up perhaps ten percent of those who are 
homeless on any given night. Members of this group experience severe 
barriers to rehousing, with high rates of mental illness, addiction and 
physical health problem. They are homeless from year to year, 
essentially living in shelters designed for emergency use, when not 
living on the streets. This group takes up a disproportionate share of 
the resources of the emergency shelter system, as well as costing other 
systems (emergency rooms, jails, detoxification centers) large amounts 
of money because their circumstances keep them in a perpetual state of 
personal crisis. Those who seek to end homelessness must focus on 
moving this particular group into permanent, stable housing, with the 
supports they need to remain stable.
                            known solutions
    The crisis of homelessness is particularly disturbing, because we 
know the solutions. Much of this knowledge comes from programs funded 
and carried out by the federal government. We know that 80 percent of 
Americans who become homeless manage to leave homelessness behind in 
short order and never return. For the remainder, we know we need to 
concentrate on permanent housing that is affordable, on improving 
incomes to make it easier to provide affordable housing, and on 
providing services to help people overcome barriers to work and to 
housing stability. These elements need to be closely coordinated. We 
have been successful in all these endeavors, but the scale of the 
problem still threatens to overwhelm those who are battling against it.
    Recent changes in federal law place more importance on the agencies 
funded by this subcommittee. Over the past decade, most have thought of 
the Department of Housing and Urban Development as the primary actor in 
the struggle against homelessness. Indeed, because of the difficulty in 
accessing many other agencies' programs, local providers have turned 
more and more to HUD, not only for funding for housing and shelter, but 
also for employment programs, substance abuse treatment, mental health 
services, case management, transportation and child care. Last year, 
however, both authorizers and appropriators made clear that they wanted 
HUD to focus more on much-needed permanent housing and less on matters 
outside HUD's areas of primary expertise. Last year's HUD appropriation 
required that at least 30 percent of the funding in its homeless 
programs go for permanent housing. The impact of the shift in HUD 
funding away from services has already been felt in many areas. Along 
with increases in need, the refocusing of HUD priorities in its 
homelessness programs on permanent housing will put more pressure on 
programs funded by HHS, DoL and DoE.
                         priorities for funding
    With these background matters in mind, the National Alliance to End 
Homelessness would ask the subcommittee to pay particular attention to 
the following programs as it prepares an appropriation bill for the 
2000 fiscal year. We also respectfully direct the subcommittee's 
attention to the ``Statement on fiscal year 2000 Appropriations for 
Homeless Programs within the U.S. Departments of Health and Human 
Services, Education, and Labor,'' previously filed with the 
subcommittee jointly by the six national organizations that include 
work on federal homelessness policy as a primary part of their 
respective missions.
Department of Health and Human Services
    Targeted homeless substance abuse program.--There is currently no 
funded federal program focusing on the treatment needs of homeless 
people with addictions. This is true despite the fact that rates of 
addictions are especially high among the small percentage of homeless 
people who can be characterized as chronically homeless, who take up a 
disproportionate share of shelter resources, who no doubt do the most 
to fuel public discontent about homeless people, and who are at the 
center of many local conflicts about proper responses to homelessness. 
Treatment works for these individuals; and yet treatment is largely 
unavailable. The ill effects on individuals and on communities are 
many. One can be seen in San Francisco, where at least 86 of the 157 
deaths of homeless people on the streets last year (an all-time high) 
were caused by untreated substance abuse problems.
    The SAMHSA reauthorization bill, now being considered in the 
Senate, may address this problem by including a program targeted to the 
addiction treatment needs of homeless people. Funding will be needed to 
get that program off the ground. In the mean time, SAMHSA has current 
statutory authority to at least fund temporary projects to apply the 
results of previous demonstrations, showing effective strategies for 
treating addictions of homeless people. The subcommittee could begin to 
fill a gaping hole in the system to address homelessness, by making a 
significant appropriation of new money to the Center for Substance 
Abuse Treatment, in either a program included in the reauthorization 
bill or in the existing ``Knowledge Development and Application'' line, 
directing CSAT to use the money for competitive grants to local 
nonprofit organizations to provide programs that implement research 
findings on the most effective means to address the substance abuse 
treatment needs of homeless people. The programs should provide 
effective services including but not limited to outreach, case 
management and treatment. They should work to improve the ability of 
``mainstream'' treatment programs (those not specifically targeted to 
homeless people) to be responsive to the particular needs of those who 
are homeless. They should prioritize individuals for whom homelessness 
is a chronic condition. Finally, they should be closely coordinated at 
the local level with agencies that provide permanent housing, shelter, 
employment support, mental health treatment and other services to 
homeless people, in order to focus resources on the priority of 
rehousing homeless people with the most severe substance abuse 
problems.
    The PATH program.--Another extremely difficult aspect of 
homelessness is the subject of the PATH program (Projects for 
Assistance in Transition from Homelessness), administered by the 
Substance Abuse and Mental Health Services Administration within HHS. 
PATH provides formula grants to each state for community-based 
outreach, case management and treatment for homeless people with severe 
mental illnesses, including those with a dual diagnosis of mental 
illness and drug or alcohol addiction. PATH grantees often search out 
homeless people in streets and abandoned buildings, and respond to 
calls from concerned business owners and others about homeless people 
with obvious mental illnesses who have no connection to local networks 
of services.
    In fiscal year 1996, when PATH funding was cut to $20 million, its 
grantees served 76,000 people, approximately $263 per person per year. 
This is in sharp contrast to the cost of involuntary hospitalization in 
a psychiatric facility, often hundreds of dollars per day.
    Although PATH is extremely effective, its resources are 
overextended. Those with mental illnesses constitute up to one-third of 
homeless adults at any point in time, and again, the rate is almost 
certainly higher for those who are chronically homeless. Homeless 
service providers often identify specialized mental health outreach and 
treatment as a service that is in too-short supply. PATH's fiscal year 
1999 appropriation is $26 million, still well below its $33.1 million 
appropriation for fiscal year 1991. Even at its high point in 1994, 
PATH served 127,000 people. The most recent available count of homeless 
people with disabilities, from 1987, showed despite the most 
conservative possible assumptions that even that long ago there were at 
least 180,000 adults with severe mental illnesses who were homeless at 
any given time. The actual number by now is almost certainly higher.
    Because homeless people with severe mental disabilities are so 
difficult to move into permanent housing, and because the PATH program 
has worked so well, the National Alliance to End Homelessness believes 
that a major increase in PATH funding is necessary in order to 
complement HUD and other homeless programs and ensure that the drive to 
move homeless people into permanent housing includes those with mental 
illnesses. The Alliance joins with other national homelessness 
organizations to recommend an appropriation of $40 million for fiscal 
year 1999.
    Runaway and Homeless Youth Programs.--This term encompasses three 
separate line items within the Administration for Children and 
Families: Children and Family Services Program/Runaway and Homeless 
Youth; Children and Family Services Program/Runaway Youth--Transitional 
Living; Violent Crime Reduction Programs/Runaway Youth Prevention. 
These programs focus on young people who are homeless, literally 
rescuing them from the most dangerous kinds of situations, sheltering 
them and giving them the skills they need to live safely and 
independently in permanent housing.
    Health Care for the Homeless.--This is one of the components of the 
Community Health Centers line within HRSA. It funds local clinics that 
cater to the unique needs of homeless people for primary health care. 
The Community Health Centers are the major federal response to the 
growing number of uninsured adults who do not qualify for any 
individual entitlement program.
Department of Labor
    Homeless Veterans' Reintegration Project.--This is an extremely 
cost-effective program aimed at reintegrating homeless veterans into 
the community through the workplace. While it is a small program, it 
leverages other resources from the Department of Veterans Affairs and 
elsewhere. The Alliance, along with other homelessness organizations, 
recommends full funding of $10 million for this program.
Department of Education
    Education for Homeless Children and Youth.--When families become 
homeless, school can serve as a place of stability for children the 
rest of whose entire existence is disrupted. This program provides 
funding to states and some localities to ensure that school access for 
homeless children is a reality. The McKinney Act included a requirement 
that all school districts ensure that homeless children are able to 
attend school, but this requirement can be hollow without accompanying 
funding. Due largely to this program, school attendance by homeless 
children has risen from 50 percent in the mid-1980s to 86 percent in 
the mid-1990s. This is a stunning success, but work remains to be done.
                               conclusion
    Local homeless service providers have the know-how and energy to 
build coordinated systems to permanently rehouse homeless people. 
Recently they have had to scramble to keep up with unacceptable numbers 
of Americans becoming homeless every day. They need tools--effective 
programs to give homeless people the treatment and services they need 
to get themselves rehoused and reconnected to their communities.
                                 ______
                                 
           Prepared Statement of the American Gas Association
    The American Gas Association (A.G.A.) represents 189 local natural 
gas utilities that deliver gas to almost 60 million homes and 
businesses in all 50 states. Additionally, A.G.A.'s members deliver the 
natural gas to more than 50 percent of the low-income households in 
this country. We are pleased to have an opportunity to submit testimony 
to the Subcommittee in support of federal funding for the Low-Income 
Home Energy Assistance Program (LIHEAP).
    First and foremost, we would like to thank this subcommittee and 
the Congress for ultimately approving a fiscal year 1999 appropriation 
of $1.4 billion for LIHEAP, which includes $300 million in emergency 
assistance. This appropriation is significant because it reverses a 
serious downward trend in LIHEAP appropriations from $2.1 billion in 
fiscal year 1985 to $1.2 billion in fiscal year 1995. In addition, we 
appreciate that the Congress approved a similar advance appropriation 
for fiscal year 2000.
    We are requesting the subcommittee to appropriate a minimum of $1.4 
billion for LIHEAP in fiscal year 2000. Further, we urge the 
subcommittee to also adopt a modest goal of providing sufficient LIHEAP 
funding to renew assistance for the more than 1 million households that 
were eliminated as a result of federal budget cuts beginning in fiscal 
year 1995. To achieve this goal, we urge the subcommittee to provide an 
advance fiscal year 2001 appropriation of $1.6 billion for LIHEAP.
    We would like to take this opportunity to demonstrate that the 
basic need for LIHEAP funding continues. The need is constant on an 
annual basis, particularly during the extreme cold and hot weather 
months. In addition, we would like to discuss two important trends that 
will have an impact on low and fixed income energy consumers: welfare 
reform and energy restructuring.
                     the need for liheap continues
    According to the U.S. Department of Health and Human Services:
  --Federal budget cuts to LIHEAP have reduced the number of households 
        served from 6.0 million during fiscal year 1994 to 4.6 million 
        today, a reduction of over 1 million households served.
  --Federal budget cuts to LIHEAP have also reduced by 10 percent the 
        amount of aid provided to those who continue to receive 
        assistance.
  --LIHEAP currently assists only 19 percent of the 29 million 
        households eligible for such assistance.
  --Low and fixed income households currently spend 18.5 percent of 
        their annual household income on energy and the proportion has 
        not changed considerably since LIHEAP was initiated. This is 
        nearly three times higher than the 6.7 percent spent by the 
        average U.S. household.
  --Nearly 70 percent of the families receiving LIHEAP assistance last 
        year survived on an annual income of less than $8,000--this 
        figure has not changed in years and does not take into account 
        inflation.
  --In 1995, nearly 34 percent of the households receiving assistance 
        with heating costs had at least one member of 60 years or 
        older.
    Finally, delivered energy prices today are higher than they were 
during the energy crisis of the late-1970s early-1980s. Since Congress 
passed LIHEAP in 1981, the weighted average price of energy for heating 
homes has increased 53 percent, indicating that home heating assistance 
funds are needed more now than when the program started.
    The facts above demonstrate that the need for LIHEAP assistance is 
as great as ever. We urge the subcommittee to appropriate a minimum of 
$1.4 billion for LIHEAP in fiscal year 2000 and an advance fiscal year 
2001 appropriation of $1.6 billion.
          private sector assistance is stretched to the limit
    Over the years, many private sector energy assistance programs have 
been created to supplement the basic LIHEAP program. For example, most 
local gas utilities have programs and policies that enable low-income 
customers to manage their gas bills--such as deferred and budget 
payment plans, payment counseling, weatherization programs, fuel funds, 
subsidized rates, and matching grants. LIHEAP has also received support 
from a variety of community-based social service organizations such as 
Catholic Charities, the Salvation Army, the National Fuel Fund Network 
and churches and synagogues. While states, local governments, and the 
private sector have demonstrated their capacity to develop creative and 
effective programs to address some energy assistance needs, 
collectively these programs serve only as a supplement, not a 
replacement for federal LIHEAP funding.
    Even a decade ago, LIHEAP assistance was barely sufficient in 
supplementing a low income family's ability to maintain heating service 
through an entire winter. Today, LIHEAP has been reduced to half of 
that level. As a result, state and local fuel assistance directors are 
stretched to the limit. According to the Colorado Energy Assistance 
Foundation, the inability to pay utilities is second only to the 
inability to pay rent as a reason for homelessness. In Charlotte, North 
Carolina, a relatively prosperous community, the local fuel fund has 
reported a 20 percent increase in demand for LIHEAP funding. Private 
sector and charitable efforts to supplement federal LIHEAP funding 
simply cannot meet the demand without an increase in federal LIHEAP 
program funding.
            trends: welfare reform and energy restructuring
    In addition to the basic need for LIHEAP assistance, there are two 
very real social and market trends that will have a substantial impact 
on low-income energy consumers--welfare reform and energy 
restructuring. As this subcommittee considers the LIHEAP budget, it 
must recognize these trends and account for the impact they will have 
on low-income energy consumers. In fact, welfare reform and energy 
restructuring make it more important than ever to have a healthy LIHEAP 
program.
    Welfare reform, of course, was passed in 1996. LIHEAP is consistent 
with welfare reform. LIHEAP is a block grant program that provides the 
states maximum flexibility. LIHEAP's administrative costs are capped at 
ten percent. More than ninety cents of every dollar goes to helping 
people stay warm, cool, or making their homes more energy efficient 
through weatherization. LIHEAP's success results from minimal federal 
requirements and discretion for the states in deciding important issues 
of eligibility, benefits and program management. Its efficiency and 
effectiveness are second to none.
    More importantly, however, is the impact welfare reform is having 
on LIHEAP. As individuals move off the welfare rolls and into the 
workforce, most individuals will enter low paying positions, earning 
minimum wage or slightly above. According to the U.S. Conference of 
Mayors, ``city officials report that the strong economy has had very 
little positive impact on hunger and homelessness. Low paying jobs that 
cannot support a household continues to be a very troublesome 
problem.'' As a result, many of these individuals are still confronted 
with energy bills that they cannot pay. LIHEAP serves as a bridge to 
help people move off the welfare rolls, into the workplace, and still 
maintain self-sufficiency.
    Take for example, the Community Action Agency (CAA) in New Haven 
Connecticut which has reported that while the number of LIHEAP 
applicants are about average this year, the money may not be sufficient 
due to an increase in poverty. New Haven CAA executive director Marcial 
Cuevas stated, ``What we see is more requests for additional assistance 
after they've exhausted what they already received. If this program 
(LIHEAP) did not exist, many people would go cold.''
    Clearly, the transition from welfare to work has put additional 
pressure on LIHEAP. If federal LIHEAP funding is reduced further, many 
hard working, low income families will have no where to turn. In fact, 
the very success of welfare reform during this transition period may 
well depend on LIHEAP.
    Another important trend is energy restructuring. The states and 
Congress are considering utility restructuring measures which will 
begin to change the way in which consumers purchase energy for their 
homes. Residential energy choice programs will allow customers to buy 
electricity or natural gas from a non-utility supplier, much as they 
select a long distance telephone carrier.
    There are two important considerations concerning the impact energy 
restructuring will have on low-income consumers. First, under the 
current regulatory scheme, local gas utilities have an obligation to 
serve all customers regardless of their ability to pay. In an open, 
competitive energy marketplace, the continued obligation to serve all 
customers threatens a local gas utility's ability to remain 
competitive. As a result, local gas utilities may not be able to 
maintain or subsidize programs such as LIHEAP. If not, there will be an 
increasing demand on federal funding.
    The second consideration concerns the cost of energy to residential 
consumers. According to a recent study published by Oak Ridge National 
Laboratory for the Department of Energy, electricity restructuring may 
lead to the break up of the traditional utilities into generation, 
transmission, and distribution components. If this occurs, fixed 
monthly charges may rise to more appropriately reflect the fixed 
portion of distribution utilities' costs, and thus come to comprise a 
larger share of a customer's monthly bill. Although, ``restructuring 
proposals intend to make electricity more affordable for society 
through the competitive pricing of generation services, competitively 
priced generation does not ensure lower prices for low-income 
customers.'' \1\ Clearly, restructuring does not replace the need for 
LIHEAP.
---------------------------------------------------------------------------
    \1\ Oak Ridge National Laboratory, ``Low-Income Energy Policy in a 
Restructuring Electricity Industry: An Assessment of Federal Options'', 
July 1997, p. 15.
---------------------------------------------------------------------------
    Finally, cutbacks in federal LIHEAP funding have forced some states 
to search for supplemental LIHEAP funding. Some states have used energy 
restructuring as a source for supplemental LIHEAP funding through wire 
charges and other mechanisms. These funds, however, merely serve as a 
supplement, and do not serve as a replacement to federal LIHEAP 
funding. In fact, federal support for LIHEAP is more important than 
ever in an uncertain energy marketplace.
                               conclusion
    In conclusion, the need for LIHEAP assistance is much greater than 
the coverage provided by federal funds. Over 1 million households have 
already been removed from the program due to recent federal budget 
cuts. The need for LIHEAP will only increase as welfare reform and 
energy restructuring continue to evolve. Thus, the A.G.A. urges the 
subcommittee to approve a minimum of $1.4 billion for LIHEAP in fiscal 
year 2000 and a $1.6 billion advance appropriation for fiscal year 
2001. Thank you for the opportunity to testify.
                                 ______
                                 
   Prepared Statement of Patricia E. Markey, Legislative Consultant, 
                     United Distribution Companies
    Mr. Chairman and members of the Subcommittee: United Distribution 
Companies (UDC) is a group of companies providing natural gas 
distribution service to customers chiefly in the Midwest and Northeast. 
Nearly half of all LIHEAP-recipient households heat with natural gas. 
UDC companies are deeply committed to meeting the energy needs of all 
our customers, in particular, those of low and fixed-income. Our member 
companies are a vital part of the communities we serve.
    Mr. Chairman, most regions of the country experience cold weather--
sometimes record-cold. In particular, some Northeastern and Midwestern 
areas regularly suffer through brutal weather well below zero for 
extended periods of time. In one recent winter, as the weather began to 
turn bitter, prices for fuel oil, propane gas, and in some states 
natural gas rose dramatically over previous levels. Oil prices 
skyrocketed and propane prices doubled and tripled in some areas of the 
country.
    Last summer, a brutal heat wave struck eleven southern and 
southwestern states (three represented on your subcommittee). 
Tragically, the scorching heat wave killed over 100 Americans. LIHEAP 
monies were released to help vulnerable low-income households pay their 
home energy bills and avoid life-threatening situations.
    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, the situation 
that many low-income families face in trying to meet their home energy 
needs is difficult even under ``normal'' circumstances. Most of us can 
take the comfort of a warm home during the winter, or some means of 
cooling in the heat of summer for granted. Try to imagine what it would 
be like if you did not have the resources 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. No one can go 
without heat in the winter.
    Mr. Chairman, in the coming months you and your colleagues will 
work to craft necessary spending measures for fiscal year 2000 that 
will set the fiscal spending priorities for the next year. 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, we applaud you, Senator Harkin and other members of 
this subcommittee for your tireless efforts last year to fashion a 
broad bipartisan Labor-HHS-Education spending bill under the current 
spending restraints. We also commend you for your leadership in 
restoring necessary funding for energy assistance. This year, on behalf 
of all of our residential customers--especially the low-income 
customers who live in our communities--We urge you to continue on this 
course and to restore critical funding for LIHEAP. We ask for your 
support for the Low Income Home Energy Assistance Program, and urge 
that this Subcommittee and the Congress adopt the following in the 
fiscal year 2000 Labor, HHS and Education Appropriations Bill:
    1. Provide an appropriation of at least $1.319 billion for the 
fiscal year 2000 LIHEAP;
    2. Provide an ``advance appropriation'' of at least $1.319 billion 
for the fiscal year 2001 LIHEAP; and
    3. Limit the set-aside for the Leveraging Incentive Program.
    In addition to the funding above, UDC also endorses the 
continuation of the ``Emergency Contingency Fund,'' consistent with 
LIHEAP's authorization statute, which authorized $600 million. However, 
in our view, the emergency funds should not be used in lieu of 
regularly appropriated funds for LIHEAP. It is essential that the 
states have the necessary monies to assist needy households and not be 
subject to the vagaries of the release of emergency monies.
    After a careful review of the facts, UDC is urging a restoration of 
LIHEAP core funding to at least the $1.319 billion level. In recent 
years, funding for the program has dropped precipitously. The National 
Energy Assistance Directors' Association (NEADA) estimated that between 
fiscal year 1995 and fiscal year 1997, 1.3 million needy households--
many of them elderly or disabled--lost necessary aid due to 
insufficient funds. We believe that the $1.319 billion in regular 
appropriations is the bare minimum amount necessary to enable the 
restoration of crucial aid to those households that lost LIHEAP 
assistance over the past several years.
    The U.S. Department of Health and Human Services reports that 
between fiscal year 1981 and fiscal year 1995, the number of federally-
eligible households has risen 45 percent; during this same time, 
however, LIHEAP funding was cut from $1.85 billion to $1.419 billion. 
The fiscal year 1999 funding for the program is even lower--$1.1 
billion. In turn, the number of households assisted dropped 
dramatically. In 1981, over 7 million eligible households received 
LIHEAP aid; however, last year only 4.5 million needy households were 
assisted with LIHEAP benefits. Reduced federal funding has also 
resulted in smaller assistance grants for those in need of LIHEAP.
    We applaud the Congress for recognizing the pivotal role that 
advance appropriations plays in the implementation of LIHEAP by the 
states, and we urge you to continue to give the states the necessary 
tools to plan the next year's program prior to the next heating season. 
In the past, piecemeal funding had a disruptive effect on the states' 
abilities to plan and implement their LIHEAP Programs. An advance 
appropriation of at least $1.319 billion for fiscal year 2000 is 
central to the effective administration of the program.
    UDC shares the views expressed at the LIHEAP reauthorization 
hearings in April 1997 before the House Subcommittee on Early 
Childhood, Youth and Families. Witnesses questioned the value of the 
Leveraging Incentive Program given the inadequacy of funding. 
Unfortunately, LIHEAP has not been funded at the levels the Congress 
intended when the Leveraging Program was designed.
    Congress ought not to penalize low-income seniors and families 
living in states that do not mandate programs for low-income 
households, or do not have 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 the states for qualifying 
for leveraging is disproportionate to the size of the 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. In addition, R.E.A.Ch. is 
duplicative of other ongoing efforts.
                        broad support for liheap
    Members of the Subcommittee must recall the formidable efforts of 
your colleagues to restore critical funding for LIHEAP during the 105th 
Congress. Mr. Chairman, we are sure that you are also aware of current 
congressional letters--with broad bi-partisan support--urging the 
restoration of LIHEAP in the fiscal year 2000 Budget.
    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 organization supporting 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 had a 
long-standing policy urging the Congress to reject any further cuts or 
rescissions to LIHEAP. In its most recent action taken on a resolution 
adopted in February, NARUC has urged the Congress to provide at least 
$1.3 billion for fiscal year 2000 and advanced funding of at least $1.3 
billion for fiscal year 2001, and urged the continuation of advance 
appropriations. LIHEAP is recognized as 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 
5.5 million households which received LIHEAP assistance in fiscal year 
1995 [The Department of Health and Human Services is now in the process 
of updating this data.], approximately 70 percent of these families had 
annual incomes of less than $8,000. In fact, in Pennsylvania and Iowa, 
61 and 87 percent respectively, of LIHEAP recipients earned less than 
$8,000. Yet despite this low income, the majority of recipient 
households are not receiving public assistance. As an example, in 
Illinois, 70 percent of LIHEAP-recipient households are not on welfare.
    On average, one-third of LIHEAP households are elderly. States, 
such as Maine, South Dakota, Georgia, Tennessee, South Carolina, 
Nevada, and Louisiana, and Arkansas find more than 40 percent of their 
LIHEAP recipient households include an elderly person. Four states 
represented on your subcommittee, Mississippi, Texas, South Carolina, 
and Nevada had approximately 60 percent of recipient households which 
included an elderly person(s). Due to federal cuts, many of these 
households may have lost assistance. For example, in Pennsylvania, 25 
percent of seniors that received LIHEAP in fiscal year 1995 lost all 
benefits in fiscal year 1997 due to cuts. Finally, nationwide, nearly 
one-quarter of the households served include a disabled member. The 
following states had in excess of 30 percent of LIHEAP-recipient 
households with a disabled member: Mississippi, New Hampshire, Idaho, 
Texas, Arizona, South Carolina, Nevada, Wisconsin, Georgia, Oregon, 
North Carolina, Tennessee, Arkansas, Kentucky, Louisiana, California, 
and Illinois.
    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.
Assistance critical to poor making transition out of welfare/working 
        poor
    A key underlying principle of Welfare Reform 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, last year, Catholic Charities USA 
released the results of its annual survey--the most comprehensive 
report available of private social services and activities. It reported 
that increasingly, working people are coming to them in crisis. This 
organization provided emergency food and shelter to almost 7.9 million 
people in 1996. Over half of those assisted were not on welfare. They 
need help with grocery or utility bills to make it to the next 
paycheck. For many, the choices are between heat and food, rent, 
medicine for a child, or bus fare to work. Catholic Charities has cited 
that there are not enough ``decent'' jobs; therefore, many people will 
not have ``the safety net of minimum benefits, and our agencies simply 
do not have the resources to handle the increased demand.'' Thus, 
everyone has not benefited from the economic expansion.
    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 
nearly 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. Last year, Caroline Myers, Executive Director 
of the Crisis Assistance Ministry in Charlotte, North Carolina, 
testified on this subject before the House Labor, HHS, and Education 
Appropriations Subcommittee on behalf of an organization which she 
chairs, the National Fuel Funds Network (NFFN). NFFN's 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. NFFN's testimony provided greater 
detail about other private sector programs that exist to help bridge 
the gap between federal LIHEAP funding and the need that exists 
throughout the nation. More recently, a representative from the 
National Headquarters of the Salvation Army, the biggest private 
administrator of Fuel Fund Assistance, sent a letter to the House 
Labor-HHS-Education Appropriations Subcommittee underscoring the 
importance of funding LIHEAP at $1.3 billion, at the minimum, citing 
that private efforts cannot make up for adequate LIHEAP 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.
    During the LIHEAP reauthorization hearings held by the House 
Subcommittee on Early Childhood, Youth and Families in the last 
Congress, 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.
    Deregulation and increasing competition create intense financial 
pressures on gas and electric utilities. As a result, these companies 
cannot afford to shoulder the responsibility 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.
                               conclusion
    Mr. Chairman, the reauthorization hearings examined the LIHEAP 
Program. 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.
    Mr. Specter, the witness gave a strong endorsement of LIHEAP and 
the need for more adequate funding. They told compelling stories about 
low-income households who have benefited from the program. The Maryland 
LIHEAP-recipient described her situation as the primary wage earner for 
a family of five. 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 are already causing 
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.
                                 ______
                                 

                        DEPARTMENT OF EDUCATION

    Prepared Statement of Peter Lennie, Ph.D., Dean for Science and 
                      Professor of Neural Science
    I appreciate this opportunity to present testimony to the 
Subcommittee to discuss a scientific research project which is not only 
an important priority for New York University, but which we believe 
will advance the national interest through enhanced scientific 
understanding of brain development.
    Our project addresses the programmatic priorities of this 
subcommittee, which is on record in support of ``research in the area 
of brain development, mechanisms that underlie learning and memory, the 
acquisition and storage of information in the nervous system, and the 
neural processes underlying emotional memories as they relate to 
intellectual development and cognitive growth.'' We thank the 
Subcommittee for taking the time to consider and give its support to 
the important research being conducted in this area--an area of great 
strength at New York University. We at NYU firmly believe that in the 
coming decades, a federal investment in mind and brain studies will 
repay itself many times over.
    In line with the Subcommittee's interests, New York University is 
undertaking to establish a Center for Cognition, Learning, Emotion and 
Memory (CLEM). This Center will draw on the University's strengths in 
the fields of neural science, biology, chemistry, psychology, computer 
science, and linguistics to push the frontiers of our understanding of 
how the brain develops, functions and malfunctions. In addition, as a 
major training institute, the Center will help prepare the next 
generation of interdisciplinary brain scientists.
    To establish this Center, New York University is seeking $10.5 
million over five years to support and expand the research programs of 
existing faculty, attract additional faculty and graduate and 
postgraduate trainees, and provide the technical resources and 
personnel support that will allow us to create a premier, world class 
scientific enterprise. Individual researchers in the science programs 
at NYU compete for investigational support through traditional routes, 
very successfully. However, these traditional funding sources do not 
address the specific need for establishment of a new cross-disciplinary 
area of scientific study, particularly one that transcends biomedicine, 
psychology, education, computer science, cognitive science, and 
linguistics. Nor do they provide the extensive funding necessary for 
faculty and student support and personnel and technical resources. 
Support from the Subcommittee on Labor, Health and Human Services, and 
Education would enable us to meet these needs, and to fully develop the 
potential New York University has to produce a new understanding of the 
brain, and new ways of using that knowledge for improving the national 
welfare.
                         research applications
    Studies of the fundamental neurobiological mechanisms of the 
nervous system help educators, health care providers, policy makers, 
work force managers, and the general public by informing our 
understanding of normal brain development and function in both children 
and adults, thereby making it easier for us to detect and correct 
impediments that affect our ability to learn, think, and remember, and 
mature as productive members of family and society. Research in this 
area will ultimately contribute to a better understanding of how 
children learn at different stages; how educators can improve students' 
retention and memory; how childhood and adult learning is shaped by 
different cognitive styles; how aging affects memory; and how diseases 
alter memory. There are enormous potential applications for early 
childhood intervention, teacher training, educational technologies, job 
training and retraining, and diagnosis and treatment of mental and 
memory disorders.
    Early Childhood and Education: Research into the learning process 
as it relates to attention and retention holds important implications 
for early childhood development. Scientific findings on brain 
development generated by researchers at NYU point clearly to windows of 
learning opportunity--that open and close--with important implications 
for when children best learn. Understanding how, when and under what 
conditions learning proceeds can lead to practical applications for 
parents, caregivers and educators. In the midst of a national debate on 
education reform, thousands of educational innovations are being 
considered without the advantage of a fundamental understanding of the 
learning process. CLEM researchers, coupled with educational 
psychologists and their expertise in normal childhood development, can 
contribute to a better understanding of how parents can foster 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 stimulate interest and 
increase retention and memory. These findings are crucial to national 
efforts to enhance early childhood education, and improve teaching and 
learning in the elementary grades. At NYU, research by cognitive and 
neural scientists will be enhanced by collaboration with scholars in 
the School of Education and the Center for Digital Multimedia; the 
Center brings together educators, laboratory scientists and software 
designers to explore how interactive multimedia technologies enhance 
teaching and learning.
             advances in biomedical and behavioral research
    Research conducted in our Center will by its nature address the 
loss of memory through aging or disease, as well as disorders of 
emotional systems that commonly characterize psychiatric disorders. At 
NYU, pioneering research into the neurobiology of fear is generating 
important information about the brain systems that malfunction in, for 
example, anxiety, phobias, panic attacks, and post-traumatic stress 
disorders. The brain's fear system is involved in many human emotional 
disorders, and malfunctions in emotional systems commonly characterize 
serious psychiatric disorders. Research into the neural mechanisms of 
fear will help us understand the source of emotions, how they are 
triggered by circumstance, why these emotional conditions are so hard 
to control, and, of greatest practical importance, how they can 
incapacitate, undermine attentiveness, and weaken our capacity to learn 
and remember skills. Ultimately, our research will generate clues for 
prevention and treatment of emotional disorders, focusing perhaps on 
the ways in which unconscious neural circuitry can, in effect, be 
altered or inhibited.
    Job Training and Retraining: Research into the fundamental 
processes of cognition and learning, emotion and memory will help 
address the persisting challenge the nation faces in training new 
recruits to the labor force, preparing welfare recipients to move into 
the labor force, retraining workers dislocated from downsized 
industries, and retraining workers in new technologies. Basic 
scientific research into neural and psychological mechanisms can help 
rationalize job training programs and increase their effectiveness.
                  feasibility: institutional strengths
    New York University is well positioned to create and operate a 
major multidisciplinary research and training center. There is 
commitment to the CLEM project at the highest level of the University 
administration, established frameworks for interdisciplinary 
collaboration, strengths in neurobiological, psychological and 
computational sciences, and standing in the international scientific 
community. The nation's largest private university, with 13 schools and 
over 49,000 students, NYU is a leading center of scholarship, teaching 
and research. It is one of 29 private institutions constituting the 
distinguished Association of American Universities, and is consistently 
among the top U.S. universities in funds received from foundations and 
federal sources.
    As the core of a decade-long multi-million dollar science 
development plan, NYU created a premier neuroscience and cognitive 
psychology program that encompasses a pre-eminent faculty and generates 
substantial external funding from federal and state agencies as well as 
the private sector. These investigations have attracted millions of 
federal dollars from the NIH, the NSF and the EPA. In addition, NYU has 
received major funding from the most prestigious private foundations 
supporting the sciences. This includes the Howard Hughes Medical 
Institute (HHMI)--the foundation most active in support of the life 
sciences. (NYU is now home to no fewer than six HHMI Investigators, 
with corresponding funding from the Institute.) The HHMI also has 
awarded NYU two major grants, each exceeding $1 million, from its 
Undergraduate Biological Science Initiative Program, as well as a major 
facility improvement grant. The W. M. Keck Foundation also awarded two 
grants, each exceeding $1 million, for facility and program development 
in the neural and cognitive sciences; one grant funded the renovation 
of a major new laboratory in emotional memory studies. The Alfred M. 
Sloan Foundation similarly awarded two major grants totaling $2 million 
to found the Sloan Center for Theoretical Visual Neuroscience--one of 
five institutions chosen to implement the Foundation's national 
initiative in theoretical neurobiology. Neural science faculty have, as 
individuals, won prestigious awards, including HHMI Investigator, NSF 
Presidential Faculty Fellow, NIH Merit Awardee, McKnight Foundation 
Scholar in Neuroscience, and MacArthur ``Genius'' Fellow.
    Neural science at NYU is particularly well known for research in 
the neural basis of visual processing and perception, theoretical/
computational neurobiology, the linkage of sensation and perception 
with action, emotional memory, plasticity in the visual and auditory 
system, molecular and developmental neurobiology, and cognitive 
neuroscience. NYU scientists have made important contributions to 
visual processing, deriving the most successful methods available for 
studying nonlinear interactions in neuronal information processing; 
emotion, giving the first real glimpse into the neuroanatomy of fear; 
neural development, with landmark work on the vision system; and the 
neural bases for auditory function, including neural sensitivity to 
auditory motion stimuli.
    With these strengths, NYU is particularly well placed to create a 
distinctive center that will capitalize on expertise in physiology, 
neuroanatomy, and behavioral studies and build on active studies that 
range from the molecular foundations of development and learning to the 
mental coding and representations of memory. The Center will encompass 
diverse research approaches, including mathematical and computational 
modeling, human subject psychological testing, use of experimental 
models, and electro-physiological, histological, and neuroanatomical 
techniques.
    While other academic institutions are also studying the brain, NYU 
has special strengths in important emerging research directions. To 
elaborate, vision studies at NYU follow an integrated systems approach 
that has been shown to be highly successful approach in unraveling this 
complex system, and that has established NYU as an internationally 
known center. The interest in vision, a key input to learning, is 
associated with focused studies on the learning process, particularly, 
the interaction with memory and behavior. NYU vision scientists are 
studying form, color and depth perception; visual identification; the 
varieties of visual memory; and the relationship of vision and 
perception to decision and action. Studies ask: How does vision 
develop? How does the brain encode and analyze visual scenes? What are 
the neural mechanisms that lead to the visual perception of objects and 
patterns? How do we perceive spaces, depth, and color? How does the 
brain move from vision and perception to planning and action?
    NYU is also at the frontier of studies in the neuroanatomy and 
physiology of emotion, a new area of exploration that complements 
studies of how perceptions, thoughts, and memories emerge from brain 
processes. Work recently conducted at NYU and elsewhere has established 
the biological basis of emotions and the patterns by which they are 
expressed within the neural circuits of the brain and the actions of 
the body. The new studies have found that there are multiple systems in 
the brain, each having evolved for different functional purposes, and 
each producing different emotions. Work being conducted at NYU also 
suggests that the neural circuits supporting the expression of emotions 
are highly conserved through evolution. They persist, unconsciously, in 
our daily behavior, and shape our reactions to events well before we 
rationally and consciously process the event. Scientists at NYU are 
using behavioral testing, physiological recording of neural activity, 
and neuroanatomical tract tracing to ask, what are the neuroanatomical 
pathways for the formation of emotions and emotional memories? How do 
we learn and remember emotions? These studies have crucial applications 
for personnel training, job performance and mental health, and address 
such questions as: How can emotions, such as fear, facilitate or 
undermine the training process? Do emotionally stressful situations 
affect our ability to remember facts, retrieve information, perceive 
events and objects? How can we better diagnose and treat emotional 
disorders which undermine performance? How can we enhance attentiveness 
and memory in stressful situations?
    NYU's special strengths also lie in the infrastructure it has 
established to promote multidisciplinary brain research that 
incorporates experimental, theoretical, and computational components. 
As an example, the Sloan Center for Theoretical Visual Neuroscience 
fosters joint research that harnesses the tremendous recent advances in 
computational speed, size and memory to effectively revolutionize the 
power of quantitative analysis to address fundamental problems in 
neurobiological systems. The Center houses faculty with joint 
appointments in neural science (Arts and Science) and mathematics 
(Courant Institute of Mathematical Sciences), supports neural science 
trainees with backgrounds in the physical and mathematical sciences, 
and fosters a range of multidisciplinary projects which include 
analysis of neural and network dynamics of the visual cortex; the 
nonlinear dynamics of the thalamus and other neural structures; 
analysis of the visual perception of occluding objects; brain imaging 
and adult brain plasticity.
    CLEM will bring the University's many strengths in these areas more 
fully to bear on the challenges and opportunities that 
multidisciplinary studies present. The Center will provide an 
organizational identity, core resources, and common focus for the 
university's efforts. For students, it will provide an educational 
forum to apply knowledge gained in one discipline to problems in other 
disciplines. For researchers, the Center's synergistic linkages between 
basic science departments, mathematical and computational units, and 
biomedical departments will encourage intellectual cross fertilization 
and will permit the consolidation of individual efforts in 
multidisciplinary but conceptually coordinated efforts. For colleagues 
in the fields of technology, education, and medicine, the Center will 
facilitate connections with life scientists and enhance the translation 
of research knowledge into commercial and educational applications and 
health care.
    CLEM will be an interdisciplinary unit linking faculty, students, 
programs and resources from several schools of New York University. 
These are the Faculty of Arts and Science, the Courant Institute, 
School of Education, and School of Medicine, including its Skirball 
Institute of Biomolecular Medicine and the associated Nathan S. Kline 
Institute Center for Advanced Brain Imaging. To be housed at the 
University's Washington Square campus within the Faculty of Arts and 
Science, CLEM will coordinate laboratory research and training in 
fundamental neurobiological, psychological, and computational studies 
of the nervous system. The enhanced research and training that will be 
possible will attract public and private funding above and beyond the 
substantial funds, honors and recognition already awarded to the 
University's researchers, and will support the center's continued 
growth and development.
    Mr. Chairman, this concludes my remarks. I thank you for the 
opportunity to submit this testimony.
                                 ______
                                 
 Prepared Statement of the American Association of Colleges of Nursing
    The American Association of Colleges of Nursing (AACN) represents 
over 530 baccalaureate and graduate nursing education programs in 
senior colleges and universities across the United States.
    This statement presents AACN's fiscal year 2000 appropriations 
recommendations for nursing research and education. AACN thanks the 
members of this subcommittee for the fiscal year 1999 funding levels 
for the National Institute of Nursing Research (NINR) at NIH, the Nurse 
Education Act (NEA) (Public Health Service Act Title VIII), 
Scholarships for Disadvantaged Students (PHSA Title VII), the Agency 
for Health Care Policy and Research (AHCPR), the National Health 
Service Corps (NHSC), and others. These needed funds are being well 
spent to improve the public health.
    For NINR, AACN recommends an increase of $18.523 million over the 
Administration's fiscal year 2000 budget to $90.2 million, the 
professional judgment budget. For AHCPR, AACN asks for funding of $188 
million. For fiscal year 2000 for the NEA, AACN respectfully requests 
an increase to $74.6 million. For SDS, we seek an increase to $21.3 
million. For NHSC, AACN suggests $85.8 million for the scholarship and 
loan repayment program for fiscal year 2000. AACN endorses the fiscal 
year 2000 overall NIH recommendation of 15 percent made by the Ad Hoc 
Group for Medical Research Funding. AACN agrees with the recommendation 
of the Health Professions and Nursing Education Coalition for fiscal 
year 2000 of $316 million for PHSA Titles VII and VIII. AACN also 
advocates appropriate fiscal year 2000 funding levels for Higher 
Education Act programs that serve nursing students at the undergraduate 
and graduate levels, such as Pell Grants, Perkins Loans, Federal Work-
Study, TRIO, and GAANN. AACN's reasons follow.
                 national institute of nursing research
    Funding NINR at $90.2 million, the professional judgement budget 
level, would support significant new research opportunities such as: 
enhancing adherence to diabetes self-management behaviors; prevention 
of low birth weight in minorities; improved care for children with 
asthma; managing symptoms in AIDS and cancer; and expanded 
opportunities for pre- and post-doctoral training in nursing research. 
Seeking an increase of $20 million over the previous year is not an 
extreme goal: For fiscal year 1999, NIH's Center for Alternative 
Medicine received a $30 million increase.
    Nursing research contributes significantly to wellness and health 
outcomes.--The National Institute of Nursing Research performs a wide 
span of clinical research, developing and testing interventions for 
promoting health and preventing disease. NINR research has made a 
difference by identifying ways, for example, to reduce high blood 
pressure in young urban African-American men at high risk for 
cardiovascular disease, to help teach children how to prevent and 
manage their asthma symptoms and to identify pain reducing drugs that 
work better for women. Nursing and its research are relevant to 
virtually every condition and disease within the health care delivery 
system. Indeed interdisciplinary research partially funded by NINR 
increases the value of NIH research and is complementary to biomedical 
research.
    The following study is one example of how NINR research improves 
outcomes and cost effectiveness.
    Today's shorter hospital stays may be based on hopes of saving 
money, but they mean that patients are sicker at discharge and need 
more support at home. NINR funded a project for comprehensive discharge 
planning and follow-up programs using visits and telephone contact by 
advanced practice nurses. The study improved patient outcomes and 
decreased the cost of care and the likelihood of readmissions. 
Originally developed with a focus on mothers and low birth weight 
infants, the model of care tested in this study was expanded to elderly 
patients with complex medical and surgical conditions. Mary D. Naylor, 
PhD, RN, of the University of Pennsylvania School of Nursing was the 
principal investigator on this study, and was the lead author on a 
paper in the February Journal of the American Medical Association that 
described the results. The study used Advance Practice Nurses (APNs) to 
work with the patients, family members, and other health care providers 
to plan the discharge from the hospital and follow-up care for high 
risk patients (mean age 75) in the Philadelphia area. The objective was 
to increase patient and caregiver ability to manage unresolved health 
problems. This study showed that compared to a control group that had 
standard discharge planning and home follow-up, intervention group 
patients were less likely to be readmitted to the hospital, have fewer 
multiple readmissions, and fewer hospital days per patient. Impressive 
as the outcomes were, the study also showed that Medicare saved 
$600,000 in the APN-managed intervention, a per-patient savings of over 
$3,000. This study showcases the value of nursing research supported by 
NINR: improved outcomes for high risk hospitalized elders and savings 
for the Medicare system. This JAMA article has generated considerable 
interest from providers and managed care systems--all considering this 
model for implementation.
    NINR is one of only two National Institutes of Health (NIH) 
institutes since 1995 to receive growing numbers of research 
proposals.--Unfortunately, NINR is projecting that it will only be able 
to fund 19 percent of its peer-reviewed, approved applications in 
fiscal year 1999, compared to the NIH projected average of 33 percent. 
NINR has disproportionately slow growth compared with NIH in general. 
Since 1986, NINR received only $55.5 million, or 0.5 percent of the 
total NIH growth of $10.3 billion. Low funding limits NINR's ability to 
support research and training. NINR's small base operates as a penalty 
and suppresses its rate of growth. NINR is the smallest institute at 
NIH with $69.82 million (FY 1999). The next lowest funded institute 
(Deafness) receives more than 3 times as much money ($229.8 million). 
This low funding base limits NINR's ability to support research and 
training. NINR also received the smallest budget increase (10 percent) 
in fiscal year 1999. NIH received an increase of 14.7 percent with some 
institutes receiving as much as 15.9 percent on much larger bases. (For 
example in fiscal year 1999, an 11.5 percent increase for the National 
Institute of Child Health and Human Development, whose total fiscal 
year 1999 funding is close to the average of all funding for NIH 
institutes, equaled $77.5 million, but a 10 percent increase for NINR 
equaled just $6.4 million.) A small percentage increase on such a low 
base means a very small dollar increase for the science of nursing. 
Given the importance of nursing research and the need for research 
training, as shown by exciting clinical examples, this trend must be 
changed.
[GRAPHIC] [TIFF OMITTED] T07NOND.000

    The graph shows funding in dollars from inception of the National 
Institute of Arthritis and Musculoskeletal and Skin Diseases, the 
National Institute on Deafness and other Communication Disorders, and 
the National Institute of Nursing Research. As you can see, the chart 
demonstrates the way in which low initial funding and small percentage 
increases have adversely affected NINR's ability to fund nursing 
research and training.
    NINR has been designated as the lead institute at NIH to coordinate 
research on end-of-life care, a new initiative that requires adequate 
financial resources.--End-of-life issues are critically important to 
our aging patients and their families. End-of-life care utilizes many 
of the skills of nursing such as management of pain, handling of 
chronic conditions, and family counseling.
    NINR must be able to increase the number of nurse scientists to 
meet the Nation's health challenges.--In 1994, a National Research 
Council report urged a substantial increase in the number of nurse 
researchers, but NINR has not reached even half of the proposed figure. 
There is a scarcity of nurses with doctoral degrees compared to other 
research professions. NINR supports minority and disadvantaged students 
and investigators. In addition, there is a graying of nurse researchers 
and a strong need to prepare and bring to maturity a sizable cadre of 
nurse scientists in the future.
    NINR supports research in two Institute of Medicine high priority 
areas: clinical research and behavioral research.--Clinical research 
may be more expensive because it involves working directly with 
patients (as opposed to laboratory research), but it is just as 
important to the discovery of knowledge and its application to specific 
conditions. Behavioral research is also a focus for nursing 
investigators studying social support, health promotion, self-esteem, 
stress and others.
    NINR's Core Centers focus on major concerns of nursing including 
symptom management (University of California--San Francisco), care of 
the chronically ill (University of Pittsburgh [PA] and University of 
North Carolina, Chapel Hill), serious illness (University of 
Pennsylvania), gerontological nursing interventions (University of 
Iowa), and women's health (University of Washington). The Core Centers 
promote outreach activities to disseminate findings and implications. 
While the Centers are relatively new, they have provided valuable 
knowledge on patient care issues.
    NINR's research agenda focuses on helping patients deal with pain, 
maximizing the quality of life of people living with chronic conditions 
or the physical disabilities of stroke, avoiding low birth weight 
babies, and maternal and child health. For instance, a University of 
Illinois-Chicago NINR project is examining ways to strengthen 
respiratory muscles in patients with chronic obstructive pulmonary 
disease. A University of Arkansas NINR grant has produced ways to 
improve knowledge on the ability of nursing home residents to achieve 
their activities of daily living thus reducing their need for 
assistance. A Florida Atlantic University project seeks to find ways to 
improve the quality of life and to reduce the care costs for 
Alzheimer's disease patients by using exercise and special monitoring. 
A Johns Hopkins University (MD) NINR project has investigated several 
interventions to reduce the risk of high blood pressure in young black 
men, a common concern in this population. A University of Mississippi 
Medical Center project funded by NINR is supporting an 
interdisciplinary research team to examine treatment of blood clots and 
tumors. NINR grants to schools in New York are examining childhood 
asthma and the side effects of chemotherapy.
    A number of major national nursing and other organization support 
better funding for the National Institute of Nursing Research. The Tri-
Council for Nursing (AACN, American Nurses Association, National League 
for Nursing, American Organization of Nurse Executives), the Coalition 
for Nursing Research Funding (32 members), and the Doctoral Dean's 
Group for Nursing Research Funding (31 members) all advocate a 
substantial increase in funding for the National Institute of Nursing 
Research.
                        the nurse education act
    The Nurse Education Act programs serve critical public health 
objectives. AACN seeks an increase in NEA for fiscal year 2000 to $74.6 
million. NEA appropriations for fiscal year 1999 were $67.855 million.
    Funding for nursing education should be stable.--Higher education 
programs for professional nurses operate on the basis that a student 
will study for two, three or more years. Highly trained faculty are 
hired in what has become a very competitive market for people with the 
background needed to educate baccalaureate and advanced practice nurses 
for primary care. Funding to run this type of system should be stable; 
otherwise skilled faculty will be lost and students will face obstacles 
in completing on time. In fact, AACN knows that there are shortages of 
some types of nurses in parts of the U.S. right now.
    Funds for nursing education should be sufficient.--The Nurse 
Education Act is important because it supports innovations in education 
that enable schools to infuse their graduates with skills needed by 
today's changing health care system with its emphasis on primary care 
and health promotion. The NEA has supported over 50 percent of 
currently operating nurse-managed centers. All 28 NEA supported centers 
are in medically underserved areas, with 32,000 primary care service 
visits in 1995. The NEA helped increase the number of minority nursing 
graduates by 24 percent over the past 5 years.
      the new nurse education act will work for better health care
    The Nurse Education Act (Public Health Service Act Title VIII) 
helps schools of nursing and nursing students prepare for an evolving 
health care delivery system. The NEA was reauthorized in 1998. The new 
NEA (Public Law 105-392) offers expanded flexibility through:
    Advanced Education Nursing Grants (Sec. 811).--Grants to schools to 
train advanced practice primary care nurse practitioners and nurse 
midwives. Also provides grants to educate master's and doctoral 
students as clinical nurse specialists, public health nurses, nurse 
administrators, faculty, nurse anesthetists, and non-primary care nurse 
practitioners. Includes traineeships for master's and doctoral students 
with a limit of 10 percent of appropriations for doctoral traineeships.
    Workforce Diversity Grants (Sec. 821).--Grants to increase 
opportunities for nursing education for disadvantaged students 
including underrepresented minorities by providing scholarships, 
stipends, pre-entry preparation, and retention activities. Grantees are 
responsible for accomplishing the objectives of their grants.
    Basic Nurse Education and Practice Grants (Sec. 831).--Grants to 
schools of nursing to strengthen basic nurse education and practice 
with seven priority areas: expanding nursing practice in non-
institutional settings to increase access to primary health care; 
training for care of underserved and high risk populations, education 
for managed care, developing cultural competency, expanding 
baccalaureate enrollments, increasing nursing career mobility, and 
nursing education in informatics and use of distance learning.
                scholarships for disadvantaged students
    Scholarships for Disadvantaged Students is a PHSA Title VII program 
(Sec.737) that provides funds to disadvantaged and minority health 
professions students. Law directs 16 percent of the funds appropriated 
to nursing students. This program is the major federal scholarship 
source for undergraduate nursing students. The majority of SDS 
recipients are minority students. AACN recommends that SDS be funded at 
$21.32 million for fiscal year 2000, a 10 percent increase. (There is 
also an education loan repayment program for nursing faculty from 
disadvantaged backgrounds. (Sec.738)
               agency for health care policy and research
    AACN recommends a 10 percent increase over fiscal year 1999 for 
AHCPR to $188 million in fiscal year 2000. AHCPR's mission is critical 
to wise utilization of health care dollars because it seeks to discover 
and to publicize the most effective health care interventions.
                     national health service corps
    AACN suggests a 10 percent increase over fiscal year 1999 for the 
National Health Service Corps Scholarship and Loan Repayment programs 
(PHSA Title III) to $85.8 million for fiscal year 2000. This program 
seeks to attract health professionals to practice in Health 
Professional Shortage Areas that lack such providers. Many of those 
areas are rural, and have difficulty attracting and retaining 
caregivers.
                               conclusion
    In summary, AACN respectfully recommends the following 
appropriations for fiscal year 2000:

                         [In million of dollars]

National Institute of Nursing Research............................  90.2
Nurse Education Act...............................................  74.6
Scholarships for Disadvantaged Students...........................  21.3
Agency for Health Care Policy and Research........................ 188.0
National Health Service Corps Scholarship/Loan....................  85.8

    AACN asks the subcommittee to consider these recommendations and 
will provide additional information upon request.
                                 ______
                                 
 Prepared Statement of Patrice O'Toole, Assistant Director, Federation 
          of Behavioral, Psychological, and Cognitive Sciences
    Mr. Chairman, members of the Subcommittee, my name is Patrice 
O'Toole. I am the Assistant Director of the Federation of Behavioral, 
Psychological, and Cognitive Sciences. I am testifying today on behalf 
of the scientific societies that comprise the Federation. I am also 
speaking on behalf of the American Educational Research Association, 
the American Psychological Association, and the Consortium of Social 
Science Associations. Our organizations contain most of the scientists 
who carry out the nation's educational research and many of the 
scientists who carry out its health-related research. My testimony 
will, therefore, be directed at the funding requests for those two 
areas of research.
             office of educational research and improvement
    As you know, the authorization for the Office of Educational 
Research and Improvement (OERI) at the Department of Education will 
expire during this Congress. In considering the fiscal year 2000 budget 
request, some members of Congress have justifiably questioned officers 
of the Department of Education about how well OERI has served its dual 
charges of research and improvement during the nearly-five years of its 
current authorization. The answer to their question is not simple. Some 
of the hopes that were placed in OERI when it was restructured under 
that authorization have not been fulfilled. But it is fair to argue 
that we do not know whether OERI is capable under the current structure 
of fully meeting its charges because two critical events intervened 
that make OERI's record difficult to interpret. Now that a properly 
appointed and very experienced leader is in place at OERI, some of the 
ill effects of those two events may be alleviated. It is an opportune 
moment to see that OERI has the resources to succeed in its important 
missions.
    The first critical event was Sharon Robinson's departure from her 
post as Assistant Secretary for Research and Improvement. Dr. Robinson 
was a strong administrator, and she had vision. Congress, the research 
and teaching communities, and her staff were delighted to see rapid 
development during her tenure as the first Assistant Secretary to head 
the restructured OERI. But her departure left OERI without an 
officially appointed administrator for nearly two years at just the 
time that the programs and processes she set in motion should have 
begun to mature.
    The second crippling event was the departure of much of OERI's 
senior staff at about the same time Dr. Robinson left OERI. You will 
recall that in order to reduce the size of the Federal workforce, early 
retirement packages were offered at a number of agencies at that time. 
OERI had many senior personnel, and it made good economic sense for 
them to accept early retirement. Unfortunately, their departure also 
meant that just as it was losing its able leader, much of the 
institutional knowledge, the deep expertise, at OERI was also being 
wiped out. OERI went through the middle third of its authorization 
period with what amounted to a sack over its head and an arm and a leg 
tied behind its back.
    There was little flexibility to permit rebuilding the OERI 
workforce, and there was no one with authority to rebuild it even if 
the opportunity had been present. The remaining staff kept the ship 
afloat, but had no sanction to set its course. That the staff has 
fulfilled as much of OERI's promise as it has under these circumstances 
is a credit to its dedication. That OERI has not fully met its promise 
must be understood in context.
    Now, at long last, OERI has a duly appointed Assistant Secretary, 
Kent McGuire, who has a wealth of experience in administering funding 
programs for educational research and improvement. It is not a time to 
punish OERI for not operating optimally over the past two years. 
Rather, it is a time to take advantage of new leadership by seeing that 
OERI receives the resources to do its job well. The administration has 
requested a level of funding that we believe would make it possible for 
Assistant Secretary McGuire to reestablish OERI's course toward 
stimulating solid educational research and translating the knowledge 
derived from it into practices that are effective and widely used. We 
support the administration's requested funding level, and agree that 
the new initiatives proposed by the administration are reasonable as 
well as important. We are concerned, however, that the new initiatives 
not be undertaken through new bureaucracies that are not part of the 
current OERI structure. The OERI Institutes were established to provide 
a management framework reflective of the major areas of enduring 
challenge to educational research and improvement. The proposed 
initiatives fit well within that framework and should be administered 
through the institutes with the research being carried out through the 
mechanisms now in place. Those mechanisms are field-initiated research, 
research centers, and regional laboratories. The logic behind this 
structure is that it forms a pipeline from basic research, to applied 
research, to demonstration and testing, and finally, to use in the 
classroom. The initiatives proposed by the administration would lead to 
research that is important for the improvement of education, but if it 
is to actually produce improvements, it needs to occur within the 
system that was designed to turn scientific knowledge into effective 
practices.
    In that regard, we are particularly excited by the administration's 
request for funds to continue the Interagency Educational Research 
Initiative. While the National Institutes of Health and the National 
Science Foundation have supported research that is of tremendous 
importance to education, much of the knowledge that has been produced 
has not moved from the scientific to the educational community. In 
large part that has not happened because neither NIH nor NSF possesses 
the pipeline from the laboratory to the teacher in the classroom. OERI 
has the pipeline. That is why the union of OERI, NSF, and NIH in a 
joint educational research program is worthy of very strong support. We 
urge you to honor fully OERI's funding request for this initiative, and 
we recommend that the Subcommittee add funds to the National Institute 
of Child Health and Human Development budget so that NICHD can be a 
full partner in the initiative. It is our understanding that funds for 
the initiative were in the NICHD budget that went to OMB, but that they 
were removed at OMB. Each agency in the partnership has a unique role 
to play in making this initiative successful. Each agency should have 
the funds to do its part.
    In summary, we urge you to recommend that Congress support the 
administration's request for $540.3 million to support OERI's research, 
statistics, assessment, dissemination, and educational improvement 
activities and that new research initiatives be administered through 
the existing institute framework.
                     national institutes of health
    The administration is requesting a 2.1 percent increase this year 
for the National Institutes of Health (NIH). This would increase NIH's 
budget from $15.6 billion to $15.9 billion, an increase of $320 
million. The Federation is concerned about the administration's 
incremental proposal for NIH. Last year, the administration did offer 
an unprecedented increase of 8.4 percent for NIH and Congress took that 
a step further and approved a 15 percent increase. But under the 
administration's fiscal year 2000 budget proposal of a 2.1 percent 
increase NIH will not be able to sustain it's current research 
portfolio let alone encourage future innovative scientific research. A 
2.1 percent increase will not sustain the research begun within the 
past few years.
    The Federation along with other scientific organizations and key 
members of Congress is asking the subcommittee to recommend a larger 
increase of 15 percent for NIH. This increase would continue Congress' 
commitment toward doubling NIH's budget within the next five years. We 
base our request for this substantial increase on two observations.
    The first is that the pace of discovery in the full spectrum of 
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 life span.
    Some of the most significant advances in science in recent years 
have been from research in genetics and neuroscience. The work being 
done in these areas is a prime example of how basic genetic and 
neuroscience research is contributing to our understanding of a number 
of diseases, such as Parkinson's, Alzheimer's, drug addiction and 
diabetes. Scientific advances in the biology of brain disease have been 
possible because of new methods for the study of the nervous system, 
such as neuroimaging.
    Understanding and identifying the molecules that guide the 
formation of the brain is allowing neurobiologists to visualize how the 
developing nervous system organizes itself, to explain complex 
behaviors, and to describe neurological and psychiatric diseases with a 
new level of precision. However, equally important is the role that 
behavioral, psychological, socio-cultural, and environmental factors 
play in health. Our beliefs, our emotions, our behavior, our thoughts, 
our family and cultural systems, our socio-economic status, as well as 
the environmental context in which we live, are all as relevant to our 
health as our genetic inheritance and our physiology.
    The emergence of cross-disciplinary collaboration has been a major 
component in the fast paced research developments in these arenas. 
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 take the medications properly---a 
discipline that can be trained by application of techniques developed 
through behavioral research.
    Similarly, recent NIH-supported behavioral research has produced 
useful new knowledge, including a better understanding of basic 
behavioral and social processes and how they interact with biological 
processes. This understanding is coming from many lines of research: 
studies of lifestyle choices, dietary habits, the desire and ability to 
maintain exercise or medication regimens, psychological functioning, 
and influences of one's social and cultural environment on behavior.
    All these lines of research converge to give us a picture of the 
factors that can affect an individual's ability to remain healthy or to 
recover from disease or to function well despite a chronic condition. 
And that knowledge leads to treatments and other interventions to 
maintain health throughout the life span.
    NIH's Office of Behavioral and Social Sciences Research (OBSSR) has 
been pivotal in supporting these studies and translating the findings 
into effective prevention and treatment strategies. OBSSR, under the 
purview of the Office of the Director of NIH, coordinates all the 
institutes and centers in marshaling their individual resources to 
collaborate on behavioral and social sciences research. OBSSR was 
congressionally mandated in 1993 and began operation in 1995 with a 
primary mission to foster the development of cross-disciplinary 
communication and research collaboration among behavioral and social 
sciences and between the behavioral and social sciences and biomedical 
sciences. OBSSR's efforts are assuring that development of effective 
behavioral interventions is keeping pace with technological advances.
    OBSSR has been operating for several years with a small staff and a 
small budget. Last year Congress approved a $10 million increase for 
OBSSR to continue its efforts to encourage cross-institute 
collaboration and research in the behavioral and social sciences. The 
President's budget request for OBSSR for fiscal year 2000 is $13.2 
million---a nominal increase above OBSSR's current budget of $12.66 
million. The Federation supports an additional $10 million increase for 
fiscal year 2000 for OBSSR. This increase of approximately 22 percent 
combined with the President's request would bring OBSSR's total budget 
close to $24 million and would significantly augment OBSSR's ability to 
coordinate research across institutes. This is an efficient use of 
resources and a beneficial mode of operation, because it links areas of 
related knowledge that might otherwise remain separated.
    A prime example of the 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 to mind. When medications are misused, the 
result is not only that the patient's disease cannot be controlled, but 
also the bacterium that causes the disease develops resistance to 
medication making the disease more difficult to treat. These diseases 
are resurfacing at an alarming rate throughout the country. We face a 
serious challenge with respect to these diseases and our ability to 
curb them may become the public health problem of the 21st century.
    OBSSR sees adherence to medication and treatment regimens as an 
area ripe for collaborative research in fiscal year 2000. In fact, 
since the 1970s only 13 randomized and controlled studies have been 
conducted on adherence and treatment effects. Developing strategies and 
interventions for patients and doctors is critical to curbing the 
emergence of more drug-resistant infectious diseases. In response, 
OBSSR plans to develop an RFA to encourage research on understanding 
and improving adherence to treatment on all levels.
    Behavioral and social scientists working with other scientists and 
health care providers can find answers to this growing problem. COSSA 
is holding a congressional briefing on this very topic, April 16. 
Another path that OBSSR sees to resolving this problem is to support 
medical schools in incorporating research findings from behavioral and 
social scientists into medical education. As it stands now, medical 
schools do not routinely address nor recognize the importance of 
behavioral and social aspects of diseases. OBSSR is developing an RFA 
to enable medical schools to include evidence-based behavioral 
treatment approaches in their curricula.
    NIH funding has permitted us to use research wisely, that is, in 
the combinations that will be most efficient in reaching solutions to 
typically multifaceted health problems. To continue successful 
biomedical and behavioral research at this level requires an ongoing 
commitment by Congress to find the resources for expanding NIH's budget 
without cutting the budgets of other important public health programs. 
We understand that the current budget caps make it difficult to 
prioritize needs, but we strongly urge the subcommittee to take 
whatever means is necessary to find the funds to maintain a high level 
of support for NIH.
    With increased support, the current pace of discovery and 
collaboration can be sustained. The largest per person expenditures for 
health care occur near the end of life. One goal of research is to 
understand what interventions through the life span will have the 
greatest promise of assuring that the period of great illness before 
the end of life is minimized. The National Institute of Child Health 
and Human Development (NICHD) conducts research on human growth and 
development from conception through birth, infancy, childhood, 
adolescence, reproduction, and through maturity to old age. As such, 
NICHD addresses some of the most important health and development 
problems facing our children and families. Based on this broad spectrum 
of research, we believe that NICHD's fiscal year 2000 budget should be 
substantially increased by approximately 22 percent, bringing its 
budget up to $915 million. Historically, NICHD has consistently been 
one of the lowest funded institutes even though it conducts research 
that has immediate, proven and successful applications through 
behavioral intervention. We urge the subcommittee to press for higher 
funding of NICHD.
    Behavioral research has a large role to play in contributing to the 
nation's health, because controllable choices and behaviors in life 
have a heavy impact on the quality of life. Obviously, such behavioral 
choices as to smoke 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 
shrinkage of health care costs 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 
down at the same time.
    We strongly urge the Subcommittee to recommend a 15 percent 
increase for NIH because the investment in knowledge will result in 
healthier citizens and health care cost savings that far exceed the 
research investment. Slighting research will assure that rising health 
care costs will remain among our most serious national crises.
    We thank the Subcommittee for the opportunity to present our views.
                                 ______
                                 
  Prepared Statement of Chief Mater Sergeant (Ret.) James E. Lokovic, 
   Director, Military and Government Relations, Air Force Sergeants 
                              Association
    Mr. Chairman and distinguished committee members, on behalf of the 
members of the Air Force Sergeants Association, thank you for this 
opportunity to discuss the vitally important issue of Impact Aid 
funding within the context of the Department of Education's (DoE) 
fiscal year 2000 budget. The primary mission of this association is to 
promote and protect the quality of the lives of all enlisted Air Force, 
Air National Guard and Air Force Reserve members, retirees, and their 
families. Impact Aid is an important program for those military 
families we represent as it zeroes in on the quality of the education 
programs provided to their children. It is ironic that the 
administration that purports to focus so much on education has chosen 
to once again slash Impact Aid dollars--by $128 million in his fiscal 
year 2000 budget. The implicit statement in these such decisions is 
that military children are a lower priority than others in our nation. 
We urge this committee to once again force the administration to do 
what is right in taking care of military families and children.
                               background
    Impact Aid appropriations provide assistance to school districts 
for several reasons. Impact Aid is provided to local communities in 
light of the presence of civil servants, Native American children, low 
rent housing, and--in 40 percent of the total appropriation--to school 
districts impacted by the presence of military children. It is on 
behalf of these military children that I speak this afternoon. Simply 
put, Impact Aid is the federal government's obligation to the children 
of military personnel.
    From the time of the Truman Administration, our government has 
recognized the unique sacrifices, transient nature, and special 
requirements of military families. Impact Aid has helped compensate for 
a funding inadequacy in local districts which educate military 
children. This shortfall is created by an inadequate contribution on 
the part of the military installation and military members to local 
taxes which fund public education.
    For military children, funding is provided at two different levels; 
one level (3a) if the parents of a student live and work on federal 
property and another level (3b) when a parent works on federal property 
but lives in the community as a renter or homeowner. Local education 
agencies receive $2,000 for each 3a student and $200 for each 3b 
student. Impact Aid is an excellent example of federal funds going 
directly to the targeted program with little bureaucratic red tape. The 
funds go directly to schools to serve the education of military 
children, and local boards of education decide how these funds are to 
be spent.
    Certainly, the children of military members lead a unique life, 
fraught with challenges unlike those faced by most of the rest of this 
nation's youth. They typically change schools often, repeatedly being 
uprooted and having to readjust to new communities and friends. One 
very necessary annual budget action has been to recognize these young 
men and women by providing funding through Impact Aid to the local 
school districts which educate them. This federally funded program 
supplements the cost of educating military children in grades 
Kindergarten through 12.
    Interestingly, for these children, the return on our government's 
investment goes beyond the normal focus on an educated citizenry. These 
children are unique in that approximately 50 percent of current active 
duty personnel grew up in military families. In that sense, Impact Aid 
directly affects the quality of our nation's future military leaders.
    Without question, the dynamics of the military family are in 
transition. The all-volunteer force has had a dramatic impact on the 
new military and its demographics. More personnel are married. 
Approximately 65 percent of military spouses are employed, especially 
within enlisted families. There are more single parents in our military 
today. There has been a steady increase in the number of military pre-
school age children. Active duty personnel have about one million 
children younger than 12 years of age.
    Today, there are increasing pressures on military families with the 
very vigorous military operations tempo and executive decisions to 
involve the U.S. military in peacekeeping/police actions around the 
world. Military parents are now constantly ``on the bubble,'' subject 
to short-notice deployments. As the national leadership has 
significantly reduced the size of the military, it has also 
significantly increased the mission requirements. On top of that, 
further anxiety exists with the uncertainty of downsizing, 
privatization and outsourcing. With all of the other challenges of 
military life, it is important that, at the least, we are committed to 
provide a quality education for military children. It is a high 
priority for military families it is a readiness and a quality-of-life 
issue. As our military personnel are deployed, they should not have to 
worry about whether their children are taken care of.
          why military children need the support of impact aid
    In recent years, districts with a large number of military children 
have found there is inadequate education funding which has required 
higher property tax rates (which generally fund local school systems). 
Clearly, localities, should not be punished because of the location of 
a federal facility. The administration, which ultimately assigns these 
families, has an obligation to support them. And yet, it is ironic how 
little attention has been paid to military families during 
administration discussions on nationwide educational funding and 
expansion. The children of our military members must be considered in 
these plans. Impact Aid is the most proper way to reflect the need to 
protect their (and local community) interests.
    We would like to remind this committee that there have been 
attempts in the past to charge ``enrollment fees'' to the parents of 
military children. For enlisted families, in particular, such an 
eventuality could be devastating since they are paid the least. 
Military parents expect that the federal government will act in the 
best interests of their families. If there is any group among our 
nation's families that should earn an extra measure of governmental 
support, it is those who serve our nation and are transferred at the 
pleasure of the government. However, we fear that continued 
diminishment of the program will result in other attempts by 
communities to charge fees to make up for education funding shortfalls. 
It would be wrong to penalize military families simply because the 
government stations the family at a particular location.
    The problem could become even more severe. As the military proceeds 
with the privatization of military housing, and if that housing is not 
considered ``federal property,'' then students would be classified as 
3b students, providing only $200 per student to the local education 
authorities. This could create tensions between the residents of 
heavily impacted communities and military facilities in those 
communities. Area civilians could reasonably question why their 
children's education must suffer. This is an area that requires careful 
congressional observation. The options are to fully fund and continue 
this important aid, or to underfund it (as has recently been done) 
hoping that Congress will remedy the situation.
    Once again, the administration followed its pattern in recommending 
deep cuts in the Impact Aid program. Why is the basic education of 
military children such a low priority for this administration? If our 
military children don't receive the quality education they need in 
elementary and high schools, we won't have to worry much about college 
incentives.
    As funding for school districts that serve military children has 
been reduced, one of the first areas that has been affected is new 
construction and upkeep of the school buildings. Continual cutting of 
the Impact Aid program has had a tremendous impact on the local 
schools. Due to the drawdown, some schools have experienced substantial 
increases in students and are having a difficult time accommodating the 
growth. Many of the school facilities used by military children were 
built in the 1950s and today are in need of repair, ADA accessibility, 
asbestos removal, etc. The aging facilities and shortage of upkeep and 
maintenance has put many of the schools in dire need of attention.
    During the past 18 years, while the number of students served 
through Impact Aid has remained the same and the consumer price index 
has increased by 70 percent, Impact Aid funding has not been treated as 
a priority. Without question, full funding for Impact Aid will greatly 
assist in insuring the children of our military personnel a quality 
education without endangering or compromising the budgets of local 
school districts.
                              the request
    We believe it's very simple, Mr. Chairman--the federal government 
must pay its tax bill to school districts for the education of military 
children. Originally instituted in 1950 and fully funded until 1970, 
Impact Aid is now regularly underfunded, and military associations and 
Congress go through an annual drill to overcome the administration's 
intentions. As we indicated, the result of such a lack of commitment to 
military children has resulted in school districts facing many 
financial crisis and the prospect of possible closures.
    On behalf of those that AFSA represents, I recommend full 
appropriations to fund Impact Aid. We fully expect that the Department 
of Defense (DOD) will once again find itself required to protect 
military children from the Department of Education's intentional under 
funding of Impact Aid. For more seriously impacted, high need 
districts, we ask that this committee recommend an Impact Aid 
appropriation of $944 Million. Those that have tracked Impact Aid since 
the 1950s and the escalating costs of education have indicated that 
this figure will fairly supplement local school districts for 
situations created by the federal government.
    It is the position of this association that the time has come to 
set an automatic funding mechanism in place to avoid having to revisit 
this issue each year. A look at the history of Impact Aid 
appropriations shows a remarkable disparity between overall DoE 
spending and Impact Aid appropriations. Since 1950, our nation's 
overall education budget has increased at a factor of more than 94 
times. During the same period, Impact Aid appropriations have increased 
at a minor fraction of that. The simple questions we need to consider 
in determining the right thing to do are these: ``Do we, as a nation, 
commit to assisting local school districts who educate the children of 
our military?'' `` If so, can we arrive at a level of spending that 
results in quality education without endangering local budgets?'' And 
finally,'' Do we accept that in stationing a military family there, our 
government also incurs an incontestable obligation to supplement local 
school districts for each student so educated?'' If so, we urge this 
Congress to arrive at an annually applied formula, using $944 Million 
as a baseline, which becomes an automatic part of every affected 
appropriations budget. We believe that paying for those items that 
reflect doing the right thing should be automatic spending priorities.
    As Senator Chuck Hagel (R-NE) recently said, ``I am constantly torn 
between amusement and bemusement as to why we continue every year to be 
presented with a budget on education that decreases Impact Aid. The 
same people . . . who are quite distraught that we can't recruit for 
the military and that the quality of life is deteriorating in the 
military . . . short circuit the funding process to educate the 
military children. It makes no sense to me.''
    We understand the difficult budget choices that you face; however, 
we believe that the education of military children should not suffer 
because their families are moved at the convenience and desire of the 
federal government. Military children should be held in the same high 
spending priority that this nation affords all other children. We urge 
this Congress to direct the Department of Education to require full 
funding for Impact Aid. Mr. Chairman, I thank you again for this 
opportunity to express our views on this issue. As always, AFSA is 
ready to support you in matters of mutual concern.
                                 ______
                                 
   Prepared Statement of Ron Herndon, President, National Head Start 
                              Association
    On behalf of the National Head Start Association, I am pleased to 
testify in support of fiscal year 2000 appropriations for the Head 
Start Program, administered by the Department of Health and Human 
Services under the Subcommittee's jurisdiction.
    The National Head Start Association (NHSA) is a private nonprofit 
membership organization representing over 800,000 children and their 
families, 150,000 staff, and nearly 2,200 Head Start programs across 
the country, including the 600 Early Head Start projects and the 35,000 
children and families they currently serve.
    NHSA supports President Clinton's goal of enrolling one million 
children in the Head Start Program by fiscal year 2002 and doubling the 
number of infants and toddlers and their families enrolled in the Early 
Head Start initiative during that same period. At the same time, it is 
my duty to respectfully remind the Subcommittee of a promise made to 
Head Start by President Bush and by both Democratic- and Republican-
controlled Congresses. That promise was that, by the turn of the 
century, Head Start would be fully-funded. Accordingly, NHSA requests 
the Subcommittee's favorable action on a fiscal year 2000 appropriation 
for Head Start of $5.507 billion--an increase of $847 million over the 
fiscal year 1999 program funding level.
    While it is the view of the National Head Start Association that 
the President's requested appropriation level ($5.267 billion, in 
increase of $607 million) will not yield an increase in Head Start 
enrollment sufficient to keep the program on the path agreed to in the 
bipartisan budget agreement enacted in 1997, NHSA is encouraged by the 
President's leadership in proposing the largest single year funding 
increase since the inception of Head Start more than 30 years ago. The 
President's budget will also support an incremental increase in Early 
Head Start enrollment consistent with the goal of 10 percent of program 
funds eventually being dedicated to the infant and toddler element of 
the program, as codified in the 1998 reauthorization of Head Start. The 
funding levels the NHSA endorses will ensure that services to infants 
and toddlers might expand without jeopardizing scheduled increases in 
Head Start enrollment for children age three through compulsory school 
age.
    In addition, we encourage the committee to direct the Department of 
Health and Human Services to support efforts by local Head Start 
programs to use expansion funds to deliver quality services to the 
infant and toddler population where a community assessment evidences a 
need for such services and the local program has the capacity to meet 
that need. Such expansion responds to local community needs, separate 
and apart from the new grant process under the Early Head Start 
expansion included in the committee bill. When combined with the new 
grant authority incorporated in the 1998 reauthorization of Head Start 
for Early Head Start, expansion of existing Head Start programs to 
serve the needs of younger children is responsive to recent research 
emphasizing the developmental needs of younger children--needs which 
can be ably addressed through the Head Start model of comprehensive 
services.
    The National Head Start Association is also pleased to support one 
critical aspect of this appropriations request--the allocation of more 
than $300 million to Head Start quality improvement, as embraced in the 
1998 Head Start reauthorization.
    Research indicates tremendous benefits to the Head Start program as 
a result of the quality set-aside specified in law. Child to adult 
ratios, group size, average daily attendance and percent of teachers 
with degrees have all improved significantly. But the job is not done 
and we should not compromise our support for quality improvement.
    Thanks in major part to the efforts of Chairman William Goodling 
during last year's reauthorization process, this year's budget request 
includes a doubling of the proportion of new funds which are allocated 
to quality improvements.
    We urge the Subcommittee to continue its commitment, also specific 
in the authorizing law, that one-half of the quality set-aside be 
dedicated to staff salaries and benefits.
    The 1998 Head Start reauthorization called for a focus on the 
professional development of Head Start staff--with a goal of achieving 
specific credentialing criteria by the end of the reauthorization 
process (50 percent of classroom teachers nationwide with at least an 
associate's degree). By no means do we believe that a paper credential 
alone is evidence of a quality Head Start teacher. But, the ambition of 
Head Start teachers, staff, directors, and parents to achieve mobility, 
to reach for betterment, and to gain the tools they need to succeed, 
must be supported. The dedicated staff who have been the backbone of 
the most successful programs in the country must be supported--just as 
Head Start families must be empowered to gain a foothold in the climb 
from poverty.
    While the attrition rates in Head Start projects across the country 
have seen marked improvement in recent years, low pay and staff 
turnover remain a constant threat to program stability and quality. In 
many cases, staff who have served Head Start for 25 or even 30 years 
are left to retire without any retirement plan. This situation must 
change if Head Start is to attract and retain high quality staff.
    Lawrence County Head Start (LCHS), New Castle, Pennsylvania, has a 
history of providing quality comprehensive early child development 
services in Lawrence County for over thirty years. LCHS is very 
concerned of the numerous unlicensed child care services that are 
cropping up throughout their service area. Head Start quality must be 
maintained. With additional funds, one of our initiatives is to utilize 
the Early Childhood/Child Development Associate (CDA) staff with 
degrees as trainers for family and group daycare homes. Their county 
collaboration team is hoping for funds to begin a ``countywide 
credential''--utilizing CDA and Head Start as a springboard to develop 
county standards. Money is needed to continue this initiative.
    Maintaining quality is deterred when salaries are not commensurate 
with school districts. I am very concerned that the quality of the 
family support services focus is being eroded during deliberations 
about Head Start. Let us never, ever, forget that the comprehensiveness 
is what counts. LCHS is going to lose some very caring, professional 
staff because of the low salaries.
    These 1.5 percent COLA and quality improvement increases have 
barely been scratching the surface. ``How can my employees cope with 
helping families, when many of them are still eligible for some sort of 
assistance?'' asks the program director. Let us not forget our current 
employees. High standards must also mean better salaries. In addition, 
LCHS has a waiting list of over 80 children for this current year. Many 
of the families are not being serviced by anyone. Families are 
struggling to find any type of care. Many elementary students are 
truant because parents are making them stay home to watch siblings so 
parents can go to work.. Additional funding would also go toward 
expanding to meet unmet needs in the community.
    Pinellas County Head Start (PCHS), Pinellas Park, Florida, is 
vigorously preparing for the 2003 educational requirements that 50 
percent of Head Start teachers nationwide have associate degrees. PCHS 
is meeting with the local community college to ensure that the 
community college offers the proper courses, and to ensure that prior 
colleges courses taking by staff are transferable at the that 
particular institution. Increased funding would go towards staff 
compensation for those individuals who have achieved their associate 
degree and help PCHS to continue to provide those staff members who 
cannot afford to pay for courses with financial aid. PCHS also helps 
with staff education requirements by securing TEACH scholarships, a 
Florida state-level education scholarship that is awarded to 
individuals who are taken education classes in the State of Florida.
    With regard to school readiness, PCHS has really worked to 
strengthen their transition agreement by adding improvements and 
submitting it to the Pinellas County School Board. The strengthened 
agreement was passed and signed by the PCHS director, the school board 
chairperson and the school superintendent. PCHS has actively involved 
area ``feeder'' elementary schools principals and teachers. They have 
arranged exchange visits for principals and teachers to visit Head 
Start centers and for children and Head Start staff to visit local 
schools. Some of these schools include Woodlawn, Rawlings and Davis 
Elementary schools.
    The challenges faced by local Head Start programs are many. But by 
no means does the Head Start program go it alone. In delivering high 
quality early care and education services, family support services, 
home visits, parent education, family literacy services, comprehensive 
health and mental health services (including services for women prior 
to, during, and after pregnancy) and nutrition services, local Head 
Start programs are dependent upon collaboration with other service 
providers running the gamut from transportation providers to food 
service firms to child care providers to medical professionals and 
schools. In each community, the list of partners is different and a 
function of the unique needs and resources available locally. In the 
Early Head Start initiative alone, school districts, nonprofit 
community agencies, colleges and universities, local governments, 
mental health and health service organizations, and child care 
providers are among the organizations providing services--much as in 
the three decade old Head Start preschool program.
    Lake County Community Action Project, (LCCAP), Waukegan, Illinois, 
thanks to help from Congress, secured funds to build a new facility in 
Waukegan, which is the largest poverty area in Lake County. The new 
center (there will be a groundbreaking ceremony next month, with the 
facility ready in 10-12 months) will serve 252 children with wrap-
around services and also house parent training capacity. The new fiscal 
year 2000 funding would allow room for expansion of this facility. 
Wrap-around services are provided with money from the Community Service 
Block Grant and the Child Development Block Grant from the state. LCCAP 
also is receiving help from local corporations to help build the new 
facility and provide wrap-around services. Increased appropriations 
would also help with the immediate expansion, 2003 staff educational 
requirements, safety and security facility improvements, and 
transportation needs.
    Increased appropriations also would help with the continuation of 
full-day, full-year wrap-around services due to welfare to work. Iowa 
East Central Train, (IECT), Davenport, Iowa, has a long wait list due 
to welfare reform, and parents now going back to work and having no 
adequate child care provided. IECT needs to expand existing services 
for children and not necessarily expand to serve new children. Wrap-
around services are currently being provided with money from the Iowa 
Department of Education and Department of Human Services. There is now 
a change in that funding stream for next year and beyond. There are now 
county empowerment boards that will allot the state dollars on a county 
level, and the IECT director feels that the money will be cut 
dramatically. The Iowa Head Start Association did not support the 
funding stream change due to the outcome it may have on the children. 
The five wrap-around classrooms with 85 children may have to transition 
from full-day, full-year to half-day, part-year. IECT also recently 
received an EHS grant. IECT has very minimal training and technical 
assistance dollars to train staff. IECT has over 100 staff and 514 
children, and for a program that size, there is not enough money to 
send staff to training. Additional funding would help amend that 
situation.
    The National Head Start Association appreciates this opportunity to 
reinforce the critical national interest served by supporting expanded 
Head Start services. With your assistance, we can continue to make a 
difference in the lives of our most vulnerable children, families, and 
communities.
    In summary, we request:
  --A fiscal year 2000 appropriation of $5.507 billion--an increase of 
        $847 million over the fiscal year 1999 appropriation level;
  --Within that appropriation, an incremental increase in the amount 
        designated for Early Head Start services; and
  --Increasing the annual set-aside for quality improvements mandated 
        in the Head Start authorizing law to $423.5 million of a 
        requested $847 million increase for fiscal year 2000.

                                 ______
                                 
      Prepared Statement of the Rock Point Community School Board
    Mr. Chairman and Members of the Committee: The Rock Point Community 
School Board urges the Subcommittee to adopt report language to 
encourage the Department of Health and Human Services (HHS) to allow 
tribal organizations to administer Head Start programs under Public Law 
93-638 self-determination contracts.
    The Rock Point community is located in an especially isolated area 
of the Navajo Nation reservation. The community's Head Start program, 
which is one of 180 Head Start centers operated by the Navajo Nation 
through a direct grant from the Head Start Bureau American Indian 
Programs Branch, serves a total of 30 children. Twenty are served at 
the Head Start center, and ten who live in particularly remote areas 
receive 1.5 hours of weekly home-based instruction. That said, at least 
60 children are eligible for comprehensive Head Start services, based 
on the kindergarten enrollment statistics for the Rock Point community.
    The Rock Point Community School Board has repeatedly asked the Head 
Start Bureau to consider our providing us with direct grantee status to 
operate the Head Start program. By becoming a direct grantee, we would 
be able to run a Head Start program which best suits the unique needs 
of our small community. Unfortunately, the Head Start federal office 
refuses to honor our request.
    Section 102 of the Indian Self-Determination Act (Public Law 93-
638) directs the Secretary of Health and Human Services (HHS) to 
contract with tribes to operate federally-funded programs for their 
members.
    The Rock Point Community School Board has successfully contracted 
education programs since 1972 and has continually improved student 
services during this time period. As such, the Board believes that 
administering a tribal Head Start program through a self-determination 
contract would be beneficial. It would decrease the amount of federal 
bureaucracy that we deal with by allowing us to receive all of our 
funds directly from Head Start using one funding document and would let 
us to run our local programs to meet local needs.
    Therefore, we request that you include fiscal year 2000 report 
language that would encourage the Secretary to work with tribes to 
fully implement the Indian Self-Determination Act so that tribal 
organizations may contract for such HHS programs as Head Start.
    Thank you for your consideration of our request.
                                 ______
                                 
 Prepared Statement of Brent Gish, President, 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 recommend the following with regard to 
the fiscal year 2000 Department of Education budget:
    --Impact Aid Basic Support Payments.--$754 million for Impact Aid 
Basic Support payments under Section 8003(b) of the Impact Aid statute. 
This is the same as the request of the National Association of 
Federally Impacted Schools and is 7.1 percent over the fiscal year 1999 
enacted level. This amount would allow the schools to be paid at 100 
percent of LOT.
    --Impact Aid Facility Repair.--$25 million under the authority of 
Section 8007 of the Impact Aid statute for payments for facility 
repair, renovation and construction. This compares to the fiscal year 
1999 enacted level and the Administration's request of $7 million. 
While this is termed a ``construction'' account in the authorizing 
statute, the funds are distributed by formula to schools, making the 
amount individual school districts receive so miniscule that it cannot 
make a significant impact on facility construction needs.
    We strongly support enactment and funding of school construction 
legislation to assist public school districts who, because of the 
presence of Indian lands, have little ability to raise revenue.
    --Forward Funding of Impact Aid.--Impact Aid is one of the few 
major federal education programs which are not forward funded. Even if 
we were not experiencing major delays in distribution of Impact Aid 
funds as we are now, it would be enormously helpful for planning and 
budgeting purposes for the program to be forward funded.
                the impact aid program in 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. 
One of the great attributes about the Impact Aid program is that it 
provides flexible funds to school districts. Because Impact Aid funds 
are actually in lieu of a property tax base, it is logical that they 
are not geared toward specific program use.
    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 Impact Aid 
program in 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 
consists 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.
    --The Impact Aid program provides a formal link between tribal 
governments and 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 within tribal boundaries. 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 statute.
the level of impact aid effects student performance--the santee school 
                               experience
    We would like to give you an example of how increased Impact Aid 
funds resulted in dramatic academic improvement for the students of the 
Santee School District.
    On March 17 the House Education and the Workforce Subcommittee on 
Early Childhood, Youth and Families held a hearing on reauthorization 
of the Impact Aid program at which Chuck Squier, Superintendent of the 
Santee School, testified. The Santee School District in northeast 
Nebraska is made up of entirely Indian trust lands and its students are 
Santee Sioux. Superintendent Squier testified about the impressive 
student gains which have been made since his school district has 
received an increase in Impact Aid funds.
    Prior to 1995 the school district had been receiving only 60 to 70 
percent of the amount of Impact Aid for which it was eligible. Reading 
scores had dropped during the previous three years: 1st grade scores 
dropped from 1.8 to 1.2 GME; \1\ 8th grade scores dropped from 7.4 to 
5.9 GME, and 11th grade scores dropped from 10.2 to 9.4 GME. In an 
effort to reverse this trend, the school district formed a Curriculum 
Committee composed of school staff, parents and other community 
members. They reviewed current research on ways to improve student 
reading and decided on a plan of action which included teacher 
training, a reading management system, multiple copies of books, a 
daily focus on reading and ninth hour tutoring. Specific programs 
included reading recovery, accelerated reader, school at the center, 
foss science, and project read. However, the recommendations of the 
Curriculum Committee were not able to be implemented because of lack of 
money.
---------------------------------------------------------------------------
    \1\ GME stands for Grade Means Equivalency.
---------------------------------------------------------------------------
    But when the Impact Aid program was reauthorized in 1994, Impact 
Aid funding increased for the Santee Sioux school. The school district 
was able to use that money to leverage additional grant dollars for 
teacher training and research-based reading programs and the rest of 
the plan recommended by the Curriculum Committee. The plan was 
implemented. Students are tested in the fall and in the spring, and the 
results have been very impressive. Last year, 28 percent of the 
students in grades 3-12 increased their reading level two grade levels. 
Another 25 percent of students raised their reading level 1.5 or more 
grade levels, and 36 percent of students raised their reading level 1 
or more grade levels. Particularly gratifying was the 9th grade 
results, as this class had declining scores for the prevoius three 
years. Expansions of the schoolwide reading program are planned for 
next year, along with rewriting the math/science studies/language arts 
curriculum--financial resources permitting.
    The Santee School District program is shared through the Nebraska 
Native American consortium, which serves 98 percent of all students in 
Nebraska living on tribal lands.
                            forward funding
    We urge Congress to take the long overdue step of providing 
appropriations to forward fund the Impact Aid program. Other major 
education programs, e.g., Title I, IDEA, Bureau of Indian Affairs 
school operations, are forward funded. School administrators in heavily 
impacted districts must make very difficult and risky program and 
personnel decisions for the upcoming school year or the next school 
year without knowing how much Impact Aid they will be receiving. For 
many Indian lands schools, Impact Aid is the primary source of school 
operations funding and the schools would shut down without it. While 
school administrators cope with this system, it makes much more sense 
for a school administrator to know 6-12 months prior to the beginning 
of the school year what its budget will be. When the federal government 
shut down several years ago, Impact Aid schools had to borrow money 
just to keep open and had to pay large amounts of interest--tens of 
thousands of dollars for some schools--for which they were not 
reimbursed. Some Impact Aid schools are in the same position now of 
having to borrow money because of problems at the Department of 
Education resulting in chronically late payments. We know that Congress 
understands this problem because most federal education programs are 
forward funded. Impact Aid is a program of basic support for a school, 
not a narrow categorical program.
    We realize that the first year of forward funding will strain the 
appropriations process as you have to appropriate two years worth of 
funding. On the other hand, we have a budget surplus and there is 
support from the Administration and both parties in Congress for 
increasing federal education funding. This seems like a good time to 
finally forward fund Impact Aid. If the program cannot be forward 
funded in total, perhaps the Basic Support and Disabilities portions of 
the program could be forward funded, or the committee could look at the 
possibility of a phased-in approach to forward funding.
                           school facilities
    School facilities construction and renovation, including making 
facilities ready for education technology, is a high priority for our 
organization.
    NIISA has and will continue to work with Congress on pending school 
construction proposals to make them responsive to the needs of our 
schools--Indian lands public schools. School construction bills have 
been introduced in a steady stream during the last two Congresses and 
also the current Congress. We have seen in these bills a growing 
recognition that there needs to be accommodation for public school 
districts which have little, if any, bonding capacity (including those 
schools in the Bureau of Indian Affairs system). For instance, there 
are now bills which would allow a state to issue school construction 
bonds (not just the LEA) and which would require the state application 
to explain how they will assist schools that lack the fiscal capacity 
to issue bonds on their own. This could be helpful to some school 
districts with Indian lands. To the extent that a school district has 
limited ability to generate revenues because of a federal presence 
(e.g., the existence of Indian trust land or federal property in the 
school district), there is a clear federal responsibility toward the 
education of the children attending those schools.
    The condition of public and Bureau of Indian Affairs school 
facilities has been documented in General Accounting Office (GAO) 
surveys. Because the GAO surveys did not report data specific to Indian 
lands public schools, our organization, in October, 1996, undertook a 
survey of school districts which receive Indian lands Impact Aid 
funding. Some of the findings from the survey, which we have previously 
reported to this Subcommittee, are:
  --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 standards 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.
    Thank you for your interest in the need of 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 National Military Family Association
    NMFA and the families we represent are grateful to this 
Subcommittee and to the Senate for its actions on behalf of military 
children and the Impact Aid Program. We thank all Congressional 
supporters of Impact Aid, especially the members of the House and 
Senate Impact Aid Coalitions, for securing another increased 
appropriation for the program for fiscal year 1999. Your continued 
support of this program translates into better education for 
approximately 500,000 military children and several million of their 
civilian classmates in school districts across the country. Thank you.
                           the military child
    NMFA presents this statement on behalf of military families, or 
more specifically on behalf of military children.
  --Military children move every 2 to 4 years and attend an average of 
        five different schools. Since the drawdown overseas, those 
        schools are more likely to be in stateside systems dependent on 
        Impact Aid rather than in Department of Defense Schools.
  --Military children come to their new schools with a wealth of 
        experience gained from living in many parts of the world. But, 
        they also frequently come with gaps in their education which 
        their new teachers must quickly fill while moving the rest of 
        the class ahead. Sometimes they are far ahead of their new 
        classmates, adding boredom to the list of reasons why they hate 
        to move to yet another new school.
  --Because of varying course standards, school schedules, and state 
        graduation requirements, they sometimes lose credits needed for 
        graduation or they must take state accountability tests on 
        subject matter they never learned. They often enter school too 
        late to win a spot on the school paper or cheerleading squad.
  --Because of the high operations tempo of today's military, the 
        military child often has to adjust to the new school, face that 
        week of standardized tests, fight for the spot on the yearbook 
        staff, play the basketball game before a crowd of strangers 
        without the support of their military parent. Worry about the 
        safety of a parent in a place far from home where people are 
        shooting at each other makes for a powerful distraction from 
        the business of education.
    Military families want to be involved in their children's education 
and list education as one of their top Quality of Life concerns.
  --They serve as room parents, vote for school board members, help 
        wire a classroom for computers which often won't be installed 
        until after they've moved away.
  --They master the bureaucracy of one school system, fighting to get 
        their child placed in proper programs in a timely manner, only 
        to have to start all over again at the next school with a 
        different procedure and a different set of tests.
  --They receive their child's report cards via e-mail on a ship in the 
        middle of the ocean and conscientiously e-mail comments and 
        suggestions back to the teacher.
  --They worry that their children are not learning what they will need 
        to succeed at their next school.
  --While a concern about the quality of their children's education is 
        rarely the sole reason military members leave the service, the 
        stress caused to a child by one-too-many moves, the special 
        services not received when needed, or the prospect of an 
        assignment at an installation where the schools have a poor 
        reputation may be enough to convince a service member that it's 
        time to leave the military. Some families become so frustrated 
        with the problems involved in moving their children from school 
        to school that the service members become ``geographic 
        bachelors.'' When they find a school which meets their 
        children's needs, the service member leaves the family behind 
        and moves on alone to the next assignment.
               why impact aid? the federal responsibility
    Military families understand that the Impact Aid program supports 
basic education services provided by their local school districts. They 
hold the government, and the citizens they have sworn to serve and 
protect, accountable for living up to their promise to provide a 
quality education for their children. The districts have accepted the 
responsibility to educate military children; the Federal government 
must provide the resources it has promised to support that education.
  --The intent of the original Impact Aid legislation (Public Law 81-
        874) was ``to provide financial assistance for those local 
        educational agencies upon which the United States has placed 
        financial burden.'' It originally provided an ``in-lieu-of-
        tax'' payment equal to the local per-pupil costs for students 
        whose military parent both lived and worked on a federal 
        installation (these students were designated A students) and 
        one-half of the local per-pupil cost for students whose 
        military parent worked on a federal installation but lived in 
        the civilian community (B students).
  --It costs roughly $6,000 to educate a child in the United States 
        today.
    But the current average Impact Aid payment for an A child is 
$2,000; the average payment for a B child $200, nowhere near the 
original intent or the cost to educate a child.
  --The Federal government has acknowledged its responsibility to 
        provide
    Impact Aid, but the program has not been fully funded since 1970. 
Even with much-appreciated Department of Defense supplemental funding 
for the most heavily-impacted districts, Impact Aid does not cover many 
districts' basic needs.
    NMFA particularly appreciates this subcommittee's support for 
continued Impact Aid funding for military children who live off the 
installation, the ``military B students.'' Although military families 
living in the civilian community pay property taxes to help support 
local schools, this revenue is not enough to cover the costs of 
educating their children.
  --States are increasingly providing a larger share of local 
        districts' funding. Many military members pay no state tax on 
        their military income. They also shop in military exchanges and 
        commissaries, thus paying no sales tax. Under the provisions of 
        the Soldiers' and Sailors' Relief Act, they are often exempt 
        from paying personal property taxes on automobiles if they are 
        on military orders away from their home state.
  --A 300-unit apartment complex occupied by military families in 
        Newport News, Virginia generates approximately $126,000 in 
        property tax revenue for the county. The school district 
        receives $17,000 in Impact Aid money for the 142 children who 
        live in the complex (Military Bs). But, the local cost to 
        educate these children in the local schools is $388,000. Local 
        taxpayers absorb the deficit of $245,000 to educate these 
        federally-connected students.
  --The Bremerton (WA) School district receives about $334,000 per year 
        in Impact Aid for the 1,500 military children and civilian 
        shipyard workers at the Puget Sound Naval Shipyard. Most of 
        these children live off the installation. Even though the 
        children's families pay property taxes, the district must deal 
        with the expenses of testing, placement in special programs, 
        and remediation incurred by most districts dealing with large 
        numbers of transient children. School accountability is 
        difficult to measure in a district where the number of students 
        moving in and out of some schools is equal to the total student 
        population.
  --Continued funding for B students is even more essential now that 
        the Department of Defense is privatizing military family 
        housing at many installations. In some cases, this action could 
        result in the transfer of land to a private developer, turning 
        Impact Aid A students into Bs. In other cases, the services are 
        arranging for developers to build military housing in civilian 
        communities rather than building homes on the installation. 
        This could also result in more B students.
                   why impact aid? quality education
    A well-funded Impact Aid program enables districts serving large 
numbers of military children to approach the level of educational 
opportunity available in neighboring, non-impacted school districts 
even though they do not have access to the same kind of tax base.
  --The Middletown (RI) School District puts its Impact Aid money into 
        its general fund where it helps the district offset property 
        taxes. About 40 percent of Middletown's students come from 
        military families based at the Newport Naval Education and 
        Training Center.
  --The Central Kitsap School District serves military families from 
        Bangor (WA) Submarine Base. Two installments of Impact Aid 
        payments for heavily-impacted districts will enable the 
        district to purchase 650 new Pentium computers. The computers 
        will not only benefit students, but will speed record-keeping 
        for teachers who are required to submit their grades and 
        attendance electronically. Other Impact Aid funds will be used 
        for building repairs and renovations.
  --Impact Aid dollars are targeted to districts where the Federal 
        responsibility is the greatest under the law. The dollars go 
        directly to school districts with no strings attached. The 
        local community, the people with the greatest stake in the 
        quality of education in their schools, decides how Impact Aid 
        funds will best serve the basic education needs of all 
        students.
                          fix the schoolhouse
    For a newly-arrived family in a military community, the sight of a 
well-maintained, safe, child-friendly school building can calm many 
anxieties about their latest move. Unfortunately, too many military 
children must deal with those anxieties in a school facility that has 
seen better days.
  --Many school districts educating military children have older 
        buildings which are expensive to maintain and ill-equipped to 
        handle technology or certain mandated programs such as special 
        education. Approximately 30 percent of the enrollment in the 
        North Chicago (IL) Community Unit School District #187 are 
        military children whose parents are based at the Great Lakes 
        Naval Training Center, the Navy's only recruit training center. 
        The district does not have the tax base to support its plan for 
        constructing ne ighborhood schools which would serve its 
        surging enrollment. Its superintendent states that ``time on 
        task, class size and educational programs are all impacted by 
        limited space.'' The maintenance of the old buildings draws 
        valuable resources away from the education needed by the 
        district's children.
  --Recent population growth in Harnett County, North Carolina was 
        partially fueled by the down-sizing of some military bases 
        which sent more families to near-by Fort Bragg. Because all of 
        the 1,100 military children attending Harnett County schools 
        live off the installation, the district receives only about 
        $36,000 in Impact Aid. The installation has donated land for 
        three schools, but the county needs to raise money for 
        construction. Until new schools can be built, many children 
        attend school in trailers. A parent described conditions in 
        these trailers for a local news reporter: ``It's hard to pay 
        attention to education in the trailers. Heating and air 
        conditioning units make so much noise that teachers turn them 
        off. Then the heat or the cold distracts the kids. Bathroom 
        breaks are lengthy trips to the main building--with no covering 
        over the path from trailer to school if the weather is bad. 
        During fire and tornado drills, the children crowd into the 
        hallways, unable to find a sheltered area in the trailers.''
  --Finding funds to repair and update the buildings owned by the 
        Department of Education on military installations is a burden 
        for districts serving military children. Photos in Appendix A 
        illustrate some of the maintenance needs at Fort Sam Houston's 
        schools. The district has served military children well from 
        these schools--both the Elementary and the High School have 
        been recognized as Blue Ribbon Schools of Excellence by the 
        U.S. Department of Education. The district has also found funds 
        to build a Junior Reserve Officers Training Corps building and 
        a Professional Development Center. It needs a new middle school 
        but, as a co-terminus district with no tax base, it has a 
        difficult time raising major construction funds.
  --Randolph Independent School District (TX), serving Randolph Air 
        Force Base also is experiencing over-crowding in its old 
        Department of Education-owned buildings. Its middle school is 
        currently housed in an annex to the high school and in portable 
        classrooms. Middle schoolers use the bathroom and other 
        facilities in the high school.
  --Districts operating buildings owned by the Department of Education 
        want to give children living on military installations the same 
        quality of education offered to children living off the 
        installation. When the Department of Education does not receive 
        the funds needed to maintain or upgrade buildings, it must make 
        choices which diminish the quality of education. A few years 
        ago, the North Hanover (NJ) Township School District, which 
        serves children on McGuire Air Force Base, requested funds from 
        the Department of Education to add a library to one of the five 
        Department of Education schools on McGuire. The superintendent 
        stated that his request was refused by the Department because 
        ``libraries are not required in elementary schools.''
                     strengthening the partnership
    Military children are everyone's children. The quality of education 
a military child receives in the Texas school she attends in 1st grade, 
for example, will affect the education she and her classmates receive 
in the California school she attends in 4th grade. Children whose 
schools are unable to provide the necessary educational services could 
easily fall behind their peers in other districts. Schools serving 
these children could face difficulties in maintaining accreditation as 
tough new standards are implemented in many states. A smooth transition 
into their next school, whether across the state or across the county, 
benefits military children, their new classmates and their communities.
  --School districts serving military children recognize their 
        interdependence and are increasing their communication with 
        each other to ease the transition of military children in and 
        out of different school systems. These districts are talking to 
        each other about how the variety of state accountability tests 
        might affect their transient populations and their own 
        performance on those measures.
  --Recognizing that service members view quality education as an 
        important component of the Quality of Life of military 
        families, the services have stepped up their efforts to 
        establish partnership programs with local schools, provide 
        better information to help ease families' transitions to new 
        schools, and study the problems faced by military children as 
        they move. They are implementing training for installation 
        school liaison officers to improve communication with local 
        schools and provide an advocate for families unfamiliar with 
        the school system's chain of command.
  --School districts, military installations, and concerned educators, 
        military leaders, Department of Defense civilians who supervise 
        military family programs, and parents are working together to 
        ease the transition of military children into new schools in a 
        new organization. The Military
    Child Education Coalition is a national, non-profit association 
dedicated to networking schools and military installations and 
``developing processes which address transition and other educational 
issues related to the milita ry child.'' The Coalition received its 
initial funding from the Killeen (TX) Independent Schools district, but 
now has a national membership representing all services. The Coalition 
is coordinating the third national conference on ``Serving the Military 
Child,'' which will be held in June at Offutt Air Force Base, Nebraska.
    To military parents, the partnerships between their schools and 
military installations are powerful indicators of the importance of 
quality education for military children. The joint efforts of school 
districts and military leaders through the Military Child Education 
Coalition and service initiatives spark hope that some of the anxieties 
about transferring from school to school will be eased for families. 
The educational focus of these efforts demonstrates the effectiveness 
of the Impact Aid program as a partner in providing a quality education 
for military children. When the Federal government fulfills its 
responsibility to provide funding for basic education to districts 
serving military children, the districts can concentrate on creating a 
high-quality educational program for all students. We urge you, the 
Members of this Subcommittee, to be active partners in the education of 
military children and fully fund Impact Aid.
                                 ______
                                 
Prepared Statement of David M. Gipp, President, United Tribes Technical 
                                College
          united tribes technical college: making a difference
    Summary of Request. For thirty years United Tribes Technical 
College (UTTC) has been providing postsecondary vocational education, 
job training and family services to Indian students from the Great 
Plains and throughout the nation. An inter-tribally controlled 
educational institution,\1\ UTTC was assisting Indian people in moving 
from public assistance to economic self-sufficiency long before the 
1996 welfare reform act. Our placement rate in 1997 was 96 percent. Our 
request for fiscal year 1999 Department of Education funding for 
tribally controlled postsecondary vocational institutions as authorized 
under Carl Perkins Vocational and Applied Technology Act is $5 million, 
or $900,000 over the fiscal year 1999 enacted level.
---------------------------------------------------------------------------
    \1\ The college is owned and operated by five federally-recognized 
tribes situated wholly or in part in North Dakota. These Tribes are the 
Spirit Lake Sioux 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.
---------------------------------------------------------------------------
    This funding is essential to our survival as we receive no state-
appropriated vocational education monies.
    We also bring to your attention and support the funding 
recommendations of the American Indian Higher Education Consortium, of 
which we are a member.
                      the administration's request
    Section 117 of the Carl Perkins Vocational Education and Applied 
Technology Education Act Amendments of 1998 (Public Law 105-332) 
authorizes funding for tribally controlled postsecondary vocational 
technical institutions. Under this authority (and also under the prior 
version of the Perkins Act) funding is currently provided to UTTC and 
one other tribally controlled postsecondary vocational institution, the 
Crownpoint Institute of Technology. The Administration's fiscal year 
2000 request is $4.1 million, the same as the fiscal year 1999 enacted 
level. There is a glitch in the newly reauthorized Perkins Act in that 
it caps funding for Tribally Controlled Postsecondary Vocational 
Institutions at $4 million instead of authorizing ``such sums as may be 
necessary'' in the out years as is the case for other vocational 
education programs. We believe this was inadvertent and ask for a 
technical correction to provide for ``such sums as may be necessary'' 
for fiscal year 2000 and the out years for Tribally Controlled 
Postsecondary Vocational and Technical Institutions.
  united tribes technical college: a unique inter-tribal educational 
                              organization
    United Tribes Technical College is the only inter-tribally 
controlled, campus-based, postsecondary vocational institution for 
Indian people. Our campus is the site of the Fort Lincoln Amy Post, an 
110-acre area near Bismarck, North Dakota. We currently enroll 310 
students from 36 tribes and 17 states. In addition, we serve 110 
children in our pre-school programs and 115 children in our elementary 
school, bringing the population for whom we provide direct services to 
535. In some years our students come from as many as 45 tribes.
              educating students and placing them in jobs
    We are proud of the education, skills and services provided by UTTC 
for our students and their families over the past thirty years. And we 
are proud that this education is taking placing in a tribal setting, 
where our students and their families can maintain and strengthen their 
tribal heritage. We have had a placement rate exceeding 80 percent 
sustained over the last 10 years, and in 1997 had a placement rate of 
96 percent. This success is all the more gratifying in light of the 
background of our students, most of whom come from tribal areas where 
poverty and unemployment are the norm. A large proportion of our 
students are from the fourteen tribes in the Dakotas, where 
unemployment among Indian people is chronic. BIA Labor Force data 
reports the percentage of potential Indian labor force on and near 
reservations in the Aberdeen Area (ND, SD, Nebraska) who are jobless is 
71 percent. Of those persons who are employed salaries are so low that 
33 percent are living below the poverty guidelines.
     uttc course offerings and coordination with other educational 
                              institutions
    UTTC offers 8 Certificate and 13 Associate of Applied Science 
degree programs.\2\ Entrepreneurship and new technology skills are 
being integrated into appropriate curricula. Recently we expanded our 
business program. And our newest program offering is a two-year degree 
program in injury prevention which was established in September of 
1998. We are the first tribal college in the nation to have this course 
of study. The purpose of the course is to train students for injury 
prevention specialist jobs, and to try to change the culture of injury 
in Indian country. The program offers classes including Introduction to 
Injury Prevention, Prevent of Traffic-Related Injuries, and Prevention 
of Injuries Due to Violence.
---------------------------------------------------------------------------
    \2\ The following one-year certificates are offered: Office 
Technology; 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.; and 
Welding Technician.
    The following two-year Associate of Applied Science (A.A.S.) 
degrees are offered: Arts/Marketing; Automotive Service Technology; 
Construction Trades Technology with options in Carpentry, Electrical, 
Plumbing and Welding; Criminal Justice; Early Childhood Education; 
Health Information Technology; Hospitality Management: Food & Beverage 
Specialization; Office Technology with emphasis in computer 
applications or accounting; Practical Nursing; Small Business 
Management; Welding Technology; Dietetic Technician, and Injury 
Prevention.
---------------------------------------------------------------------------
    The death rate among Indians due to injuries is 2.8 times that of 
the total U.S. population (Source: Indian Health Service fiscal year 
1999 Budget Justification Book). Reducing the incidence of injuries in 
Indian country is an area of focus for both the IHS and the Surgeon 
General. We received assistance through the IHS to establish our Injury 
Prevention curricula.
    All our programs are accredited through the North Central 
Association of Colleges and Schools at both the certificate and two-
year degree granting levels. During the last re-accreditation process 
(1996), the NCACS authorized UTTC to begin developing curricula for 
four-year degrees.
    UTTC has transfer and articulation agreements with other colleges 
so our graduates can transfer to four-year schools from areas including 
Licensed Practical Nursing, Criminal Justice, Business and 
Entrepreneurship and Health Instruction.
    UTTC has been a member of the Interactive Video Network of North 
Dakota's colleges, universities and tribal colleges since 1994. This is 
expanding the educational opportunities for our students.
                 job training and economic development
    UTTC is a designated Indian Minority Business Center serving 
Montana and the Dakotas. We also administer a Job Training Partnership 
Act program and an internship program with private employers. And, 
thanks to a grant from the Kellogg Foundation, we are assisting tribes 
and tribal members in the Aberdeen Area with rebuilding buffalo herds.
            coordination with state welfare-to-work efforts
    UTTC is working in cooperation with the state of North Dakota on 
welfare reform. We are serving state-referred Temporary Assistance for 
Need Families (TANF) recipients who are able to participate in our 
Cooperative Education internship program with private employers. By 
attending UTTC, these TANF recipients can meet their work, training and 
volunteer requirements. And we are providing child care for 60 children 
of state-referred TANF recipients.
    We take exception to the 12-month statutory limit on the length of 
time a TANF recipient can be enrolled in a vocational education course 
and still be eligible for TANF. This limits TANF recipients to taking 
one-year certificate courses at UTTC. Our experience shows that the 
students who graduate from a two-year, rather than a one-year, course 
have significantly higher earning power. Many of our students come to 
UTTC planning to take a one-year course, and then, finding themselves 
in a supportive environment and seeing the economic benefit of the 
longer course, decide to work for the two-year degree.
      serving families contributes to education and job placement
    We believe that a primary reason for UTTC student success is that 
we serve the students' social, academic and cultural needs. Many of our 
students are the first generation in their family to attend college and 
for many it is their first experience in living away from home. Many 
students are on public assistance and many have families of their own. 
Some of our services are:
  --Early childhood services for 110 children, ages 8 weeks to five 
        years;
  --The Theodore Jamerson Elementary School (grades K-8) serving 115 
        Indian students;
  --A health clinic whose services include immunization, health 
        education, eye and dental exams, and referrals to other health 
        care providers;
  --Family housing and dormitories for solo parents and for students 
        without children;
  --A local transportation system for students for school activities 
        and necessary appointments e.g., (doctor appointments) outside 
        the campus. Most UTTC students do not have cars.
                         uttc seeks other funds
    We are aggressive in seeking funding outside the Perkins Act for 
special needs. For example, we combined Department of Agriculture, 
Economic Development Administration and state Community Development 
Block Grant funds and replaced our aging water, sewer and gas systems 
in 1997.
    Our elementary school received a competitive Department of 
Education grant for computer technology, and was one five Indian 
schools to receive this funding. We also received a Kellogg Foundation 
grant to develop buffalo management skills for the tribes and their 
members throughout the Aberdeen Area, as they attempt to rebuild herds 
of buffalo decimated more than 100 years ago.
    The above mentioned grants are highly competitive, restrictive, 
one-time grants, and they cannot provide for day-to-day operations. We 
cannot survive without the basic operating funds which come through the 
Department of Education's tribally controlled postsecondary vocational 
institutions program.
                             current needs
    We certainly appreciate the $1 million increase provided by 
Congress in fiscal year 1999 for the tribally controlled postsecondary 
vocational program (from $3.1 million to $4.1 million). The increase 
was important, not only for the unmet needs of the current grantees, 
but because other institutions may become eligible for funding under 
this program. The fiscal year 1999 funds have not been allocated yet, 
and because this is a competitive program, we do not know yet how much 
our college will receive.
    The operating and purchasing strength of our budget has diminished 
by some 20 percent since 1990. Utility costs are especially difficult. 
Electricity expenses have risen about 20 percent per unit and the per 
unit gas costs have increases approximately 113 percent during this 
decade. We have 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 our location and the 
harsh winters in the northern plains.
    While even a $5 million appropriation for the Tribally Controlled 
Postsecondary Vocational and Technical Institutions program would leave 
us with enormous needs, it would allow us to make improvements in key 
areas including course offerings, student services, and technology. 
Below are some of our financial needs of which we want you to be aware;
  --Housing.--We need new and rehabilitated campus housing so that we 
        can increase student enrollment. Many of our buildings are of 
        historic importance. The College occupies the old Fort Lincoln 
        Army Post, and many people visit our campus to see these 
        buildings. Other than the more recently constructed skills 
        center and the community center, UTTC's core facilities are 90 
        years old. Estimates for new facilities total over $12 million, 
        according to a 1993 Department of Education report to Congress. 
        Continuing a course of non-repair will ultimately prove more 
        costly as the repairs will be greater. Fire and safety reports 
        document our repair needs.
  --Salaries.--We were able to provide a cost-of-living increase for 
        our employees last year. However, our faculty still receive 
        salaries that are lower than in any state college system. North 
        Dakota salaries for higher education faculty are the lowest in 
        the nation--but the average faculty salaries at UTTC are even 
        lower than those in the North Dakota state system.\3\
---------------------------------------------------------------------------
    \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.
---------------------------------------------------------------------------
  --Emergency repair.--Our needs for emergency repair on both single 
        and family student housing, instructional facilities and 
        support facilities exceeds $100,000. This amount will obviously 
        not cover major renovations or new facilities. Funding is also 
        needed for maintenance and repair related to damaged caused by 
        inclement weather, including blizzards and extremely low 
        temperatures.
  --Technology.--We need funding for updating our computers and 
        hardware to maintain and increase our capabilities for distance 
        learning programs for our campus-based students and students at 
        other locations. We have been working with the Denver Indian 
        Center to provide UTTC classes, via distance learning, to the 
        Indian population in the Denver area. Thus far we have three 
        classes on-line and are expecting to begin operations soon.
  --Course Offerings/Student Services.--We would like to change some of 
        our courses to better meet new market demands. For example, we 
        want to expand the allied health professions program. We also 
        need to expand our diagnostic capabilities in tribal-specific 
        areas and also in the areas of literacy and math-science 
        background. This would allow us to improve student remediation 
        services. Finally, we want to make improvements in our student 
        follow up, career development, and job market research efforts.
      american indian higher education consortia (aihec) testimony
    We support the testimony submitted to this Subcommittee by the 
American Indian higher Education Consortium. We are one of the 32 
tribal college members of AIHEC. Tribal colleges are now (since the 
1998 Higher Education Act Amendments) authorized to receive $10 million 
under the Title III (section 316) Institutional Development program, 
and we urge that this funding be appropriated. We also support the 
AIHEC requests for the Indian student teacher initiative and the Indian 
Education Act adult education program. The tribally-based colleges, 
although funded at much lower levels than other colleges, are making a 
positive difference for their students and their communities. They are 
an impressive example of tribal governments approaching issues of 
economic development, education, and preservation of tribal communities 
and cultures through the creation of culturally-based higher education 
institutions.
    Thank you for your consideration of our request. 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.
                                 ______
                                 
  Prepared Statement of Preston McCabe, President, Pinon Chapter and 
                      Pinon Community School Board
    Mr. Chairman and Members of the Committee: My name is Preston 
McCabe. I am president of the Pinon Chapter of the Navajo Nation and 
president of the Pinon Community School Board. I am presenting 
testimony in support of the Head Start and Bilingual Education 
programs.
    Our community of 11,000 is comprised of Pinon and seven other 
Chapters of the Navajo Nation. While we have made much progress in 
recent years, many Indian children remain at the bottom of the economic 
and educational ladder. In 1990, more than one-third of all Indian 
children ages 5 to 17 were living below the poverty level. Furthermore, 
the high school completion rate for Indians ages 20 to 24 is 12.5 
percent below the national average.
                               head start
    We must do more to help our children meet challenging educational 
standards that will allow them to compete in tomorrow's economy. There 
is compelling evidence that high-quality early childhood education 
programs is one way to achieve this goal. Therefore, we urge the 
Subcommittee to the following actions with respect to Head Start:
  --Fully fund the Administration's fiscal year 2000 budget request of 
        $5.3 billion for the Head Start program;
  --Prioritize the construction of badly-needed tribal Head Start 
        facilities; and
  --Encourage the Department of Health and Human Services (HHS) to 
        allow tribal organizations to administer Head Start programs 
        under Public Law 93-638 self-determination contracts.
Budget request would allow us to serve more eligible children
    At the Pinon Community School, children who have attended Head 
Start are more ready to learn. Unfortunately, the current funding level 
does not allow us to serve all of our Head Start-eligible children. The 
Head Start program serves 20 children, plus another 30 children though 
home-based instruction. That said, at least 391 children are eligible 
for comprehensive Head Start services, based--but we lack the funding 
and facilities to expand our program.
    That is why we strongly support the Administration's long-range 
goal of increasing Head Start enrollment to one million. If the 
Subcommittee fully funds the Administration's fiscal year 1999 budget 
request of $5.3 billion, another 42,000 children will reap the benefits 
of Head Start and we will be one step closer to reaching this important 
goal.
    We also urge the Subcommittee to fully fund the $420 million budget 
request for the Early Head Start program, which will support 
approximately 45,000 infants and toddlers--and their families.
Replacement facility construction should be prioritized
    Without funding to build new--and safe--facilities, the goal of 
increasing Head Start enrollment to one million will be meaningless to 
Pinon. Currently, our Head Start program is located in a 20-year-old 
classroom that only accommodates 20 students. In order to expand 
services to the 391 children who are eligible for Head Start, we will 
need an additional building.
    Therefore, we ask you to allocate a specific portion of the fiscal 
year 2000 Head Start appropriation for facility needs.
Let tribes administer local head start programs
    Section 102 of the Indian Self-Determination Act (Public Law 93-
638) directs the Secretary of Health and Human Services (HHS) to 
contract with tribes to operate federally-funded programs for their 
members.
    The Pinon Community School Board has successfully contracted 
education programs since 1988 and has continually improved student 
services during this time period. As such, the Board believes that 
administering a tribal Head Start program through a self-determination 
contract would be beneficial. It would decrease the amount of federal 
bureaucracy that we deal with by allowing us to receive all of our 
funds directly from Head Start using one funding document and would let 
us to run our local programs to meet local needs. Currently, we receive 
our funding from the Chinle Agency, which in turn receives the funding 
through the Navajo Nation, Division of Dine Education, Department of 
Head Start.
    We request that you include fiscal year 2000 report language that 
would encourage the Secretary to work with tribes to fully implement 
the Indian Self-Determination Act so that tribal organizations may 
contract Head Start.
                          bilingual education
    We request that the Subcommittee provide the amount requested for 
Bilingual and Immigrant Education, $415 million and provide funding for 
the dissemination of instruction materials in Native languages.
    In 1994, Congress authorized the Secretary of Education to provide 
grants to develop, publish, and disseminate instructional materials in 
Indian, Native Hawaiian, Pacific Islander, and outlying territories 
languages. This program has never been funded. Therefore, we urge the 
Subcommittee to include report language instructing the Secretary to 
allocate fiscal year 2000 funding for this purpose.
    At Pinon, 86 of our are considered to have Limited English 
Proficiency. It is our goal to provide these children with 
comprehensive bilingual education so that they can learn English and 
meet challenging academic standards, all the while maintaining a 
knowledge of and respect for their native language.
    To meet this goal, it is critical that we have funding to train 
personnel and to develop innovative bilingual education programs at the 
local level.
                               conclusion
    Thank you for your consideration of our concerns and comments. The 
Pinon Community School appreciates the funding that the Subcommittee 
has provided in the past to Head Start and Bilingual Education, and we 
look forward to your continued support.
                                 ______
                                 
           Prepared Statement of the City of Miami Beach, FL
    Mr Chairman and Members of the subcommittee, the City of Miami 
Beach, Florida appreciates the opportunity to present testimony on two 
important initiatives for which we are seeking Federal assistance.
            biscayne elementary/21st century learning center
    Biscayne Elementary is an ideal site for a 21st Century Learning 
Center for multiple reasons. Greatest among these is the community 
which Biscayne Elementary serves. The neighborhoods surrounding 
Biscayne Elementary are home to the most economically and socially 
disadvantaged residents of Miami Beach. Poverty, distressed families, 
social isolation and cultural/ethnic diversity are all obstacles in the 
delivery of much-needed services. Biscayne Elementary, the geographic 
and social center of North Beach, is housed within a building built 
decades ago for a population considerably smaller than it now must 
house.
    In addition to overcrowding and a poor community base, Biscayne 
Elementary is in dire need of expansion and rehabilitation to best 
serve the educational needs of its current student enrollment. Class 
overcrowding and the absence of technology in the classroom experience 
result in a lifetime disadvantage for the school s students. More 
importantly, the coupling of these deficiencies with the social 
obstacles in the surrounding community create an almost overwhelming 
challenge for area youth.
    The North Beach area has significant problems including gangs, 
drugs, high crime, unemployment/underemployment, poverty, a 
concentration of multi-unit rental housing, poor community cohesion and 
one of the most culturally diverse populations in the county. While the 
City of Miami Beach has begun to leverage a variety of resources for 
the area including law enforcement and public services, a strong 
educational foundation is central to the community s financial and 
social progress.
    Biscayne Elementary is in dire need of an infusion of resources 
including a long-overdue rehabilitation of the existing building and an 
expansion to add additional classrooms as a means of alleviating class 
overcrowding. In addition, technology must be integrated into the 
classroom in response to the needs of the marketplace. More so, the 
social needs of the surrounding community demand that Biscayne 
Elementary become a full-service school center with access to much-
needed social services, before and aftercare programming, and an 
expansion of Head Start and pre-kindergarten programs for working 
families residing in nearby homes and rental housing.
    The upgrade of Biscayne Elementary to a full-service, 21st Century 
Learning Center will provide the community with a solid foundation upon 
which to build social and economic parity with the rest of the City. 
The provision of needed services within the neighborhood will provide 
area stakeholders a means by which to access economic and social 
opportunities for betterment. More importantly, a strong tie with the 
area's school will foster greater community cohesion and provide a 
basis upon which to address other social and economic concerns.
            miami beach regional library and cultural campus
    The City of Miami Beach has made tremendous strides in the recent 
past to create a uniquely dynamic, exciting, culturally rich and 
diverse community. What the community still requires is a civic and 
cultural heart, a place of high ideals that will appeal to all the 
people who make Miami Beach their home, as well as the many tourists 
who visit every year. The City has designed, and is in the process of 
developing, a cultural and arts campus centered on Collins Park which 
will create this heart.
    This Cultural Campus is centered around Collins Park which goes 
from Collins Avenue, Florida Highway A1A, to the Atlantic Ocean. Across 
Collins Avenue from Collins Park is the existing Library with the Bass 
Museum behind it. The Bass Museum is now being expanded and will remain 
the focus point of the completed Cultural Campus. Across 22nd Street 
from the Bass Museum, a new home for the Miami City Ballet is now under 
construction. The new Regional Library, which will serve the entire 
City of Miami Beach, will be constructed across Liberty Avenue from the 
Miami City Ballet and northeast of the existing library. The Bass 
Museum, the Miami City Ballet, the Regional Library, Collins Park, and 
the associated streetscapes compose the Cultural Campus which is 
located between 21st Street and 23rd Street and from the Atlantic Ocean 
to Park Ave.
    Even though the library will be owned by the City of Miami Beach, 
the library will be managed by the Miami-Dade Public Library System. 
Being a part of the Miami-Dade System not only permits patrons to use 
the new facilities at this library, should a patron desire a book that 
is not in the library, the book can be sent to this library from one of 
the other 29 branches or the main library in the Miami-Dade System. The 
book should be available the next day.
    In addition to the Regional Library, there are two small branch 
libraries in the City of Miami Beach. The regional library supports the 
two smaller libraries with in-depth resources not available at smaller 
libraries.
    The Regional Library will provide a serene atmosphere for studying, 
research, or relaxing, in the large area for adult and young adult 
collection. These areas also have access to the cafe and the court yard 
which has a pergola, fountain and specimen tree. Seats will be 
available in the court yard for enjoying refreshments from the cafe.
    When the library is completed there will be telecommunication 
outlets for 60 computers. However during construction of the building, 
facilities will be installed to increase the number to 100 
telecommunication stations.
    The second floor will be for use primarily by children. With a 
large Children's Library as large as the Children's Room at the Main 
Library in Miami. The Children's Library will have a Children's Desk, 
Toddler Area, Picture Books Room, special area for kid's displays, and 
special rooms for story telling, arts and crafts and a work room. An 
office is also available for the Manager of the Children's section.
    An auditorium is also available for special meetings or 
presentations. The auditorium is at the front of the library and will 
be available beyond the normal operating hours of the library.
    The estimated cost of the library is $11,500,000 plus the cost of 
the land which is estimated to be $3,760,000. The City respectfully 
requests funding in the amount of $3.5 million to assist with these 
much needed improvements
                     targeted employment initiative
    The arts and entertainment and environmental sciences industries 
have experienced explosive growth in South Florida. The higher-than-
average wages paid and diversity of employment within these industries 
compliment the South Florida market.
    As these industries grow so, too, does the need for skilled labor 
to fill the employment demand. In the case of the arts and 
entertainment industry, a variety of labor is needed including: light 
and sound engineering, design, pre- and post-production, promotions, 
craft services, transportation, logistics management, etc. The 
environmental sciences industry demands skilled labor such as: 
biological engineering, waste management services, environmental 
sciences, water management, etc. In order to meet these demands for 
skilled labor, a concerted effort to train workers directly from our 
schools is needed.
    While South Florida has a variety of magnet schools for the 
performing arts, there are only two schools in the district with 
curriculum-supported programs for the non-performing employment 
opportunities within the industry: Miami Beach Senior High School and 
Miami Northwestern Senior High. Of these two, the City of Miami Beach 
offers a stronger infrastructure including year-round good weather, 
multi-faceted shooting locales, field offices for most of the art 
industries major corporations, and an international stream of tourists 
and cultural consumers.
    The environmental sciences industry will continue to grow as 
efforts are underway to manage South Florida s seemingly endless man-
made canals and the clean-up of the long-neglected ,and economically 
essential, Miami River. The strains placed on our environment can 
jeopardize the area s tourism industry unless proactive steps are taken 
to curb pollution and environmental neglect and abuse.
    Miami Beach would like to meet the labor demands of these two 
burgeoning industries. In conjunction with local public schools, the 
City of Miami Beach would like to create paid internships structured 
within a school-to-work format to prepare youths to meet the labor 
demands created by the arts and entertainment and environmental 
sciences industries, respectively. Our growing population, geographic 
location (as it relates to the global marketplace), and inviting 
economic climate provide the perfect environment in which to foster the 
growth of these two industries. The need to provide capable and 
plentiful labor is central to maintaining these industries once they 
have a foothold in the area.
    The fast-changing global marketplace demands that economic 
resources be channeled quickly as the market s needs change. It is 
imperative that a quick response be provided to both the arts and 
entertainment and environmental sciences industries. More importantly, 
the universal nature of these industries create a demand beyond the 
traditional boundaries of immediate geography. An investment in the 
labor pool to support these industries is an investment in the long-
term economic health of South Florida.
    Thank you for your consideration of these requests which are very 
important to the residents of Miami Beach, as well as the surrounding 
communities.
                                 ______
                                 
                   Prepard Statement of M.H. Bahreini
            howard university's wasting of taxpayers' money
    Attached please find copies of the testimonies that I have 
submitted to the Sub-Committee on Labor, Health & Human Services, and 
Education of the Committee on Appropriations, United States House of 
Representative, regarding appropriations for Howard University, a 
private institution that receives millions of dollars of taxpayers 
money every year for reasons that many believe no longer exist.
    My last year's testimony was submitted on behalf of hundreds of 
Howard University students who had called for the elimination of Howard 
University's unpopular and under-enrolled graduate programs. Since that 
testimony didn't raise any concern for any member of the Congress to 
call for an investigation, I am submitting another testimony this year.
    I worked as a faculty at the Howard University for eight years 
(1989-1997.) Every year I saw millions of dollars of taxpayers' money 
being wasted at Howard University for paying high salaries to 
administrators and for payment to the faculty for offering under-
enrolled (one to three students) classes. When its former President 
left the University, Washington Post reported that he had been the 
highest paid of all university presidents in the Nation that year!
    Attached to my current testimony please find a few pages of the 
``Instructor's Report of Grades'' that are submitted as evidence to 
show that courses have been offered by full-time faculty to only two 
students. The professors of these ``three-hours-a-week'' courses have 
been paid full-time salary to offer two or three of such courses (i.e. 
one faculty teaching two students 6 to 9 hours a week!) every semester!
    I respectfully ask every member of the Congress that is it fair 
that every year millions of dollars of the earnings of the hardworking 
taxpayers of this country be transferred to a private institution 
without any independent investigation on how that money is spent? Is 
Howard University still delivering the services that it was once 
``historically'' expected to deliver?
 honorable john edward porter, iii, chairman, sub-committee on labor, 
  health & human services, and education committee on appropriations, 
         united states house of representative--april 15, 1999
     howard university's wasting of students' and taxpayers' money
    I submitted a testimony last year as a concerned citizen and on 
behalf of hundreds of Howard University students who had called for the 
elimination of Howard University's unwanted graduate Programs. 
Apparently, my testimony didn't raise any concern for any member of the 
Congress last year, and the business is still ``as usual'' at the 
Howard University.
    I worked as a Lecturer at Howard University for eight years (1989-
1997.) Every year I saw millions of dollars of taxpayers' money being 
wasted at Howard University for paying high salaries to administrators 
and for payment to the faculty for offering unwanted classes. As a 
concerned citizen, I intend to continue to submit a testimony every 
year until a responsible member of the Congress calls for an 
investigation.
    Attached to this letter please find a few pages of the attachments 
to my last years' testimony showing samples of the ``Instructor's 
Report of Grades'' for courses that have been offered by full-time 
faculty to only two students at one of the graduate programs at the 
Howard University .
    As long as Howard University is receiving millions of dollars of 
taxpayers' money every year, I believe it is the responsibility of the 
Committee on Appropriations and the Congress to end corruption at that 
private institution.
hon. john edward porter, iii, chairman, sub-committee on labor, health 
  & human services, and education, committee on appropriations united 
             states house of representative--march 25, 1998
     howard university's wasting of students' and taxpayers' money
    I am writing this testimony as a concerned citizen and on behalf of 
hundreds of Howard University students who have signed the attached 
petition to Mr. Swygert, the President of that University, calling for 
the elimination of Howard's unwanted graduate programs.
    I hold a Ph.D. (1986) degree in Economics from The American 
University, Washington, D.C.. I worked as a Lecturer at Howard 
University for eight years (1989-1997.) Every year I saw millions of 
dollars of taxpayers' money being wasted at Howard.
    A major form of wasting money by Howard is to offer graduate 
courses to three or less students! In many of these classes no 
effective instruction is actually taking place.
    If we believe in a free market system, we should respect ``consumer 
sovereignty'' and ``demand side'' of the education market. This means 
that Howard should shut down its graduate programs that do not have 
enough customers.
    As a taxpayer, I believe, that it is the responsibility of the 
Department of Education and the Committee on Appropriations to have 
Howard University work for millions of dollars that it receives every 
year. Please consider the following suggestions for achieving this 
goal:
    1. As long as Howard is receiving taxpayers' money, it shouldn't be 
allowed to offer a course for less than 7 students.
    2. Howard should receive its money indirectly through the area's 
Departments of Employment Services. For every one million dollars 
received, Howard should be expected to train at least 250 job seekers 
in the fields demanded by the current job market.
                                 ______
                                 
Prepared Statement of Stephen A. Janger, President, Close Up Foundation
    Mr. Chairman, distinguished members of the Subcommittee my name is 
Stephen A. Janger and I am president of the Close Up Foundation. I 
appreciate the opportunity to submit testimony in support of the Allen 
J. Ellender Fellowship Program administered by the Close Up Foundation. 
Before beginning, I want to express, on behalf of everyone at the 
Foundation, our deep appreciation for the Subcommittee's past support. 
We are very much aware that tens of thousands of economically 
disadvantaged students would not have had this important civic learning 
opportunity without the Allen J. Ellender Fellowship Program.
    As we approach the new millennium, in our field of civic education, 
we are faced with a troubling and dangerous trend of increasing voter 
disengagement and distrust, particularly among young people. Our 
American democracy approaches the new century with a diminishing key 
component of civic health--informed citizen participants. This trend 
mirrors the mood in the country at the time of Close Up's establishment 
in 1970. As we have testified before, the disenchantment of America's 
young people with their government was a principal reason behind the 
establishment of the Close Up Foundation. The addition of Ellender 
Fellowships as a part of Close Up's work has helped to ensure that 
America's diversity, one of its proudest and strongest assets, could be 
mirrored in our programs.
    The findings of a fall 1997 UCLA survey of college freshmen's 
attitudes toward the importance of civic awareness are reinforced in a 
recently released study sponsored by the National Association of 
Secretaries of State (NASS). The NASS project entitled, New Millennium 
Project, Part 1, American Youth Attitudes on Politics, Citizenship, 
Government and Voting, was initiated in response to the 1996 
presidential election voter turnout of 49 percent, the lowest voter 
turnout in 72 years, and the even lower 36 percent turnout in the 1998 
midterm elections. As dismal as those results are, the 1998 nationwide 
turnout for 18 to 24 year-olds of 20 percent was even more disturbing.
    These findings are even more troubling when you realize that in 
1972, the first year 18 year olds were allowed to vote, 50 percent of 
18 to 24 year olds went to the polls. To try to understand this 
decline, the NASS committed to conduct a two part project to help 
identify strategies to reconnect American youth to the democratic 
process. Their recently released report completes the first part of the 
project and identifies the declining trends and some of the reasons 
underlying them. The report also outlines some strategies for reversing 
the trends.
    There are currently 70.2 million American young people under age 
18, the largest such segment of young people in the country's history. 
Engaging them in the participation of their own governance, is a 
challenge critical to the survival of American democracy. To briefly 
summarize the report's findings: the vast majority of America's youth 
(72 percent) do not feel it is their civic duty or responsibility to 
vote; by a margin of 64 to 35 percent, young people believe that 
``government is run by a few big interests looking out for 
themselves;'' 58 percent feel ``You can't trust politicians . . . ;'' 
and, 55 percent agree that institutions (schools) do not do a good job 
giving students the information they need to vote.
    Recently, Close Up conducted two surveys of student attitudes in 
the St. Paul/Minneapolis, Minnesota area and in the Miami, Florida area 
on civic responsibility at the community and national levels. The 
results of our two surveys unfortunately support the findings of the 
NASS study. Although our students are younger, primarily high school 
juniors and seniors, they share the sentiments of the 18 to 24 year-
olds in the NASS study. They indicate their disengagement in their lack 
of desire to run for an elected office or pursue a public service 
career, and their distrust of national politics is reflected in most 
students feeling that if they had any influence at all it would be at 
the local level. The students also mirrored their older peers belief 
that the media strongly affects their views of government and 
government officials.
    A major concern about this generation of 70.2 million young people 
is reaching them early enough in their education to create a positive 
attitude about their civic responsibilities to community and country. 
The NASS report suggests that we develop ``creative and participatory 
solutions'' if any real change is to occur. Developing innovative ways 
to reach and engage young people in civic education has been Close Up's 
mission during our more than twenty-eight years of experience. Hands-on 
participation has been the principal thrust of Close Up's experiential 
civic education programs from the beginning.
    This experiential education focus continues to bear fruit. 
Participants throughout the country indicate that their Close Up 
program experience motivated them to become involved in public service 
and the political process. In our fledgling alumni program, we have 
identified eighty-seven Congressional staff members as former Close Up 
participants. To meet Congressional staff who tell us that Close Up is 
the reason they became interested in public service is a source of 
great pride to all of us at Close Up.
    Another area of concern is the media's role in opinion formulation 
and the presentation of practical and balanced information to America's 
young people. As indicated earlier, young people in our surveys noted 
that the media strongly influenced their views of government. The NASS 
study suggests the media include more positive stories that highlight 
the relevance of political issues. While the media can play an 
important educational role, that role must be supplemented and balanced 
by more direct, participatory learning experiences about our government 
and elected officials. The NASS study and Close Up's surveys also found 
that a significant number of young people had very negative opinions of 
politicians and questioned their commitment to those they represent. 
Again, our experience underscores the importance of providing young 
people with the opportunity to meet and talk with their elected 
representatives as a way to counter misperceptions and create a 
healthier and more complete understanding of the democratic process.
    Close Up has worked hard to be an effective antidote for this 
problem of showing ``contempt before examination.'' Through presenting 
the realities of public service, the genuine commitment of elected 
officials, and the extraordinary difficulties of balancing the varied 
interests involved in the formulation of public policy, we have helped 
debunk the superficial and often negative impressions most students 
bring to Washington.
    The NASS study found most young people did not believe they occupy 
an efficacious position in the American political structure. 
Fundamental to Close Up's Washington program is the promotion of 
student self-esteem and an awareness that each person can make a 
difference. Because young people feel disconnected from the political 
process, their feelings in large measure are reflected in their 
ambivalence about voting. Because they don't vote, candidates are 
reluctant to expend campaign resources on this perceived non-voting 
group; thus, it becomes a classic ``chicken and egg'' problem.
    Again, Close Up tries to break down these barriers. A key component 
of the Close Up week in Washington is the Capitol Hill day. On this 
day, Close Up participants have an opportunity to view Congressional 
committees at work, to watch House and Senate floor action, and, most 
importantly, to meet with their elected representatives or their 
staffs. Over and over, participants tell us what a profound change in 
attitude they experience after meeting with their Representative or 
Senator. They appreciate face-to-face meetings with questions and 
answers. These ``simple'' meetings do more than any textbook, lecture, 
or news report could ever hope to accomplish in connecting students to 
their elected representatives and instilling in them a feeling of 
belonging to the system and a receptivity to the whole idea of civic 
responsibility.
    In both the NASS study and the Close Up surveys, young people felt 
that schools were not doing enough to teach them about citizenship and 
to motivate them to vote. The NASS study states flatly that, ``Civic 
and political education should be a high priority in our schools. Our 
educators should make every effort not only to encourage students, but 
also to teach them how to be effective citizens.'' Again, since its 
establishment, Close Up has been a leader in answering this call 
through our teacher professional development program. This program is 
run concurrent with, but apart from, the student program. Teachers 
accompanying their students to Washington participate in this special 
program that presents them with new ideas and teaching methodologies. 
This program also promotes interaction with their peers. They swap 
teaching strategies and ideas that have worked in their classrooms. 
This inspiring exchange of ideas and teaching methods, this 
experiential ``civic education teaching laboratory,'' simply cannot be 
equaled by the textbook alone. It is food for renewal and our teachers 
tells us that they return to their schools renewed and reinvigorated.
    For little expenditure of federal dollars, the Close Up teacher 
program sends hundreds of renewed teachers home each year to teach 
civic education to all of the students in their classes, not just those 
who came to Washington. Additionally, many of these teachers are from 
schools that are considered ``at-risk,'' or with large pockets of 
students most in need of assistance and/or motivation.
    Thus, Ellender Fellowships create an impressive multiplier use of 
federal funds. The Ellender Fellowships are utilized by the teachers as 
``seed'' funding to stimulate local interest and participation in the 
Close Up Washington program. For example, teachers often divide a full 
fellowship among several deserving students who meet the income 
eligibility requirement. These students, in turn, demonstrate their 
desire to participate in the program through local fundraising 
activities--often for an entire year and with considerable community 
support to supplement the fellowship portion. The Ellender Fellowship 
recipients are often the core around which teachers build the 
Washington High School program and the local and state government study 
programs, where again the creative leadership of the teachers is 
indispensable.
    With the obvious contributions Close Up continues to make toward 
helping to alleviate a national problem of civic apathy and distrust, 
it is difficult to understand why the budget office in the Department 
of Education (DEd) continues to include erroneous and outdated 
information in their Congressional budget justifications. This year, 
the DEd again cited a 1996 report submitted to the House Appropriations 
Labor-HHS Subcommittee as a justification for not funding the Ellender 
Fellowship program. In that report, the Foundation renewed its 
commitment to continue its vigorous efforts to raise funds from the 
private sector. Accompanying the commitment, however, was an 
explanation of the difficulties associated with fundraising in the 
private sector. We also discussed in some detail the realistic 
limitations that we faced in the creation of our alumni program.
    As we reported we would, we have undertaken the creation of an 
alumni program and it has been a source of great satisfaction as we get 
reacquainted with former participants who show enthusiasm for 
maintaining a connection. As we surmised they would be, however, the 
financial contributions from alumni have been very limited. Given the 
demographic characteristics of the individuals who make up our alumni 
base, our expectations for major financial support were very limited. 
We first had to find our alums and donor acquisition through direct 
marking/direct mail strategy is expensive and lengthy. Only recently 
have we begun to receive responses to our initial correspondence. 
Additionally, the age of the great majority of Close Up Foundation 
alumni is several years below that of the ``typical'' direct marketing 
donor, which is usually in the 50 to 55 plus range. The oldest of our 
alumni are just now in their mid-to-late forties (most are younger) and 
because of the passage of time since their participation, they are the 
most difficult to locate and reach with any information. Also, the 
Foundation experienced its largest growth from the mid-eighties on. 
Most of our alumni are at the beginning of their professional careers 
and experiencing financial demands of their own personal and career 
pursuits. We will, of course, continue our determined effort to 
generate alumni donations, but it is a long and cultivating process 
which will not supplement the need for federal funds.
    We are extremely proud of the fact that in June, we will celebrate 
the milestone of our 500,000th Washington program participant. We are 
equally proud that approximately 30 percent of those participants are 
from minority and underserved student populations. No other civic 
education organization can make these claims. This success is the 
result of a mission from which we have never deviated--a commitment to 
always try to reach students who need this experience the most.
    Mr. Chairman, the Ellender Fellowship program is critical to Close 
Up's work of contributing to a more civil society--of creating a better 
understanding of and involvement in our democratic process. The 
Ellender Fellowships allow Close Up to reach students who are distanced 
from the political process by financial, geographic and cultural 
barriers. These students deserve every opportunity to become inspired 
about their country. Without the Ellender Fellowships, so many students 
each year will be denied the opportunity afforded to their more 
affluent peers.
    We are grateful for the long-standing belief and support of this 
Subcommittee and the Congress. Your support of the Ellender Fellowships 
has been a great equalizer in the lives of tens of thousands of 
underserved students and, in today's climate of apathy and 
disaffection, your support is more important than ever.
    Thank you for your consideration of our request.
                                 ______
                                 
 Prepared Statement of the American Indian Higher Education Consortium
                              introduction
    Mr. Chairman and Members of the Subcommittee, on behalf of this 
nation's 31 American Indian Tribal Colleges, which comprise the 
American Indian Higher Education Consortium (AIHEC), we thank you for 
the opportunity to share our fiscal year 2000 funding requests for 
programs within the Education and Health and Human Services 
Departments.
    Under the Education Department programs, we have four specific 
funding requests:
    Higher Education Act programs.--A newly-authorized section under 
Title III Part A Section 316, specifically supports Tribal Colleges, 
and we request that this section be fully funded at the authorized 
level of $10 million. In addition, under Title IV, we support the 
President's Budget request for fiscal year 2000 funding of the Pell 
Grant Program.
    Perkins Act.--The Tribally-Controlled Postsecondary Vocational 
Institutions program (section 117) should be funded at no less than 
$4.1 million; and other Vocational and Adult Education programs should 
be funded at the levels requested in the President's fiscal year 2000 
Budget. Funding under the Carl D. Perkins Vocational and Technical 
Education Act (set-aside for Indian and Hawaiian Natives) should be 
funded at no less than the fiscal year 1999 funding level.
    Partnerships for Teacher Preparation.--This $10 million program, 
funded through the Office of Elementary and Secondary Education, Office 
of Indian Education, was proposed in the President's fiscal year 2000 
Budget and would create a new and vibrant American Indian Corps of 
Teachers (AICT). We request that the funding for this program be 
specifically directed to the Tribal Colleges and we further request 
that Congress support the full $10 million for this program.
    Greater Support of Title IX of Improving America's Schools Act.--
This title supports adult education programs for American Indians that 
are offered by state and local education agencies, and by Indian 
tribes, institutions, and agencies. This section has not been funded 
since fiscal year 1995, yet Tribal Colleges need this funding to 
support the increasing number of adult education classes they provide 
to their communities. We request that this program be funded at a 
minimum of $5 million.
    Under the Department of Health and Human Services programs, we 
request Congress recommend a $3 million level of funding for the Tribal 
College Early Childhood Initiative. This new initiative is funded 
through a Head Start discretionary grant program for fiscal year 1999.
    Mr. Chairman, this statement will cover two topics: First, it will 
provide some background on the Tribal Colleges and second, it will 
provide justifications for the above funding requests.
                     background on tribal colleges
    The dismal statistics concerning the American Indian experience in 
education brought tribal leaders to the realization that only through 
local, culturally-based education could many American Indians succeed 
in higher education and help bring desperately needed economic 
development to the reservations. The Tribal College movement began more 
than 30 years ago as a very sound and well thought-out solution to this 
challenge. In the late 1960s and early 1970s, the first Tribal Colleges 
were chartered on remote reservations by their respective tribal 
governments, to be governed by boards of local tribal people. These 
early colleges were started with little money and a lot of 
determination, in abandoned and even condemned government buildings and 
old trailers, using three-legged desks, wood crates for shelves and 
typewriters with missing keys. In 1972, the first six fledgling 
tribally-controlled institutions came together to form the American 
Indian Higher Education Consortium. Today, AIHEC is a cooperatively 
sponsored effort and integral support network for 31 member 
institutions in the United States and one institution in Canada.
    Tribal Colleges now serve more than 25,000 students each year, 
offering primarily two-year degrees, with some colleges offering four-
year and graduate degrees. Together, the colleges represent the most 
significant development in American Indian education history, promoting 
achievement among students who may otherwise never know educational 
success. All of the Tribal Colleges are fully accredited, with the 
exception of the three institutions that are accreditation candidates.
    Despite our successes, Tribal Colleges remain the most poorly 
funded institutions of higher education in this country, and although 
conditions at some have improved substantially, many of the colleges 
still operate in trailers, cast-off buildings and facilities with 
crumbling foundations, faulty wiring and leaking roofs. Our core 
funding, which is authorized under the Tribally-Controlled College or 
University Assistance Act of 1978 and funded through the Department of 
Interior appropriations bill, remains grossly inadequate. In fact, the 
Tribal Colleges' fiscal year 1999 appropriation of $2,964 per Indian 
student is dramatically less than the average per student revenue of 
mainstream two-year institutions and falls far short of the authorized 
funding level of $6,000 per Indian student. Despite an increase in our 
appropriation of $1.4 million in fiscal year 1999, due to the addition 
of another Tribal College and a 7 percent increase in enrollment, the 
Tribal Colleges are receiving $53 less per Indian Student for this 
budget year.
    In addition to providing academic, vocational, and technical 
programs similar to those at mainstream institutions and cultural 
language and history courses unique to American Indian tribes, Tribal 
Colleges provide services above and beyond those provided by most other 
post-secondary institutions. Almost all Tribal Colleges provide GED, 
basic remediation, and other college preparatory courses. We have done 
this because our missions require that we help move American Indian 
people toward self-sufficiency and help make American Indians 
productive, tax-paying members of American society.
                             justifications
    Higher Education Act requests.--The Higher Education Act Amendments 
of 1998 created a separate section within Title III, Part A, 
specifically for the nation's Tribal Colleges (Section 316). The Aid 
for Institutional Development programs, commonly known as the Title III 
programs, support minority institutions and other institutions that 
enroll large proportions of financially disadvantaged students and have 
low per-student expenditures. Tribal Colleges clearly fit this 
definition. Tribal Colleges are among the most poorly funded 
institutions in America; yet they serve some of the most impoverished 
areas of the country, bringing access to quality higher education 
programs targeted at the specific needs of their Indian students and 
communities. With the reauthorization of the Higher Education Act in 
1998, Tribal Colleges finally joined Historically Black Colleges and 
Universities (HBCUs) and Hispanic Serving Institutions (HSIs) in 
receiving a well deserved set-aside within the Title III programs. 
Congress recognized that these institutions are young, struggling, and 
most in need of aid for development by authorizing a separate section 
at $10 million. Section 316 is subject to the two-year wait-out period 
that is required under general Title III Part A. This wait-out period 
was enacted to help ensure that Title III funding reached the maximum 
number of students and institutions. Due to the small number of Tribal 
Colleges, and their overwhelming developmental needs, the intended goal 
of the two-year wait-out period would be best achieved by exempting 
section 316 from this provision. Therefore, today, we request your 
support through the addition of report language that would address this 
oversight and exempt section 316 from the two-year wait-out period, and 
your support for the full funding of this new section for Tribal 
Colleges.
    Tribal Colleges reached their peak level of participation in Title 
III in 1991, with 14 institutions receiving funds under this 
competitive program. Tribal College participation has never returned to 
the high water mark of 1991, largely due to the broadening of 
eligibility criteria for Part A. Currently, only eight Tribal Colleges 
are participating in the program. When accessed, the Title III program 
has been extremely important in bringing support in areas such as 
faculty and curriculum development, student services, and critical 
community-building programs. We urge the Subcommittee to fully fund 
this necessary section.
    Under Title IV, we support the increased funding level in the 
President's fiscal year 2000 Budget for the Pell Grant program. The 
importance of Pell Grants to our students cannot be overstated. 
Education Department figures show that half of all Tribal College 
students receive Pell grants, primarily because student income levels 
are so low, and our students have less access to other sources of aid 
than students at mainstream institutions. The inadequate funding Tribal 
Colleges receive from the Federal government has forced most of the 
colleges into a position of increasing reliance on tuition for 
institutional sustainability. As a result, tuition levels at Tribal 
Colleges are as much as 30 percent higher than the average for 
mainstream public community colleges--in 1996-97, the average tuition 
at a Tribal College was $1,507, compared with a national average of 
$1,283 at community colleges.
    Most Tribal Colleges are too young and too poor to have established 
institutional aid programs, and our students receive virtually no aid 
from the states, according to a recent study from the Institute for 
Higher Education Policy. Within the Tribal College system, Pell grants 
are doing exactly what they were intended to do: they are serving the 
needs of the lowest income students by helping people gain access to 
higher education and become active, productive members of the 
workforce. We urge you to support and expand upon this valuable 
program.
    Perkins Vocational Education Act.--Section 117 (the 
TriballyControlled Postsecondary Vocational Institutions section) of 
the Carl D. Perkins Vocational and Technical Education Act provides 
core funding for two of our member institutions, United Tribes 
Technical College in Bismarck, North Dakota and Crownpoint Institute of 
Technology in Crownpoint, New Mexico and should be funded at no less 
than $4.1 million. In addition, funding for the set-aside for Indian 
and Hawaiian Natives under the Perkins Act should be funded at no less 
than the fiscal year 1999 funding level.
    Partnerships for Teacher Preparation.--The President has committed 
$10 million in fiscal year 2000 to create a new and vibrant American 
Indian Corps of Teachers (AICT). This Corps, aimed at producing 1,000 
new teachers for schools serving American Indian students, would 
provide $5 million for fellowships to college students majoring in 
education programs and $5 million for professional development programs 
in Indian Country to support current teachers. We believe that the 
Tribal Colleges and Universities are the ideal catalysts for this 
initiative and request the addition of report language specifying this 
as a Tribal College program. We urge Congress to support this important 
proposal, by providing report language and the full amount requested in 
the President's fiscal year 2000 budget.
    Greater Support of Title IX of Improving America's Schools Act.--
This title supports adult education programs for American Indians that 
are offered by state and local education agencies, and by Indian 
tribes, institutions, and agencies. Unfortunately, the section has not 
been funded since fiscal year 1995. As mentioned earlier, the Tribal 
Colleges provide adult education classes to their communities. Yet the 
Tribal College Act does not include funding for remediation and adult 
basic education, as it only supports those students enrolled in 
postsecondary programs. But before many can even begin the course work 
needed to learn a productive skill, they first must earn a GED or in 
some cases, learn to read. According to a 1995 survey conducted by the 
Carnegie Foundation for the Advancement of Teaching, 20 percent of the 
students questioned had completed a Tribal College GED program before 
beginning formal classes at the Tribal College. At some schools, the 
percentage is even higher. For example, Lac Courte Oreilles Ojibwa 
Community College in Wisconsin reports that nearly one-third of its 
students had earned a GED through its tutoring and testing center. 
Clearly, the need for basic educational programs is tremendous, and 
Tribal Colleges need funding to support these crucial activities. The 
President's budget does not include funding for this Title, but the 
Tribal Colleges need a minimum of $5 million to provide limited support 
for the ever increasing demand of basic adult education services. 
Without this minimum commitment, how can we even begin to sustain and 
build upon the vitally needed services for our adult student 
populations? We hope that Congress addresses this serious oversight on 
the part of the Administration.
    Tribal College Early Childhood Initiative.--This initiative is 
currently funded at $700,000 for fiscal year 1999 through Head Start 
discretionary funds. The program is under the jurisdiction of the 
Administration on Children, Youth and Families (ACYF) and the 
Administration on Children and Families (ACF) of the Department of 
Health and Human Services. The Head Start Act requires a minimum of 50 
percent of the teachers in Head Start agencies nationwide obtain not 
less than an associate degree in early childhood education of a field 
related to early childhood education by 2003. Currently, 76 percent of 
Indian Head Start agencies are staffed by individuals who have earned a 
child development associate certificate; and fewer than one-quarter of 
American Indian Head Start agency personnel have earned an associate of 
baccalaureate degree. By developing partnerships between the early 
childhood education programs at Tribal Colleges and Head Start programs 
within Indian Country, American Indian Head Start agency personnel can 
gain greater access to accredited college programs in their career 
field. The increase in staff knowledge, skills and aptitude will result 
in a positive effect on the health, early childhood development and 
school readiness of the American Indian children served by this vital 
program. The Tribal Colleges request the Subcommittee to encourage this 
partnership by inserting report language recommending funding of $3 
million in fiscal year 2000 for the continuation of this important 
program.
                               conclusion
    In light of the justifications presented in this statement and the 
expected enrollment increases at Tribal Colleges, we urge the 
Subcommittee to increase funding for the specific Tribal College 
programs mentioned here. Fulfillment of AIHEC's fiscal year 2000 
request will strengthen the mission of these colleges and the enormous, 
positive impact they have on their respective communities and will help 
ensure that they are able to properly educate and prepare thousands of 
American Indians for the workforce of the 21st century. As the latest 
Carnegie Report on Tribal Colleges stated, ``Now, as strongly as ever, 
we repeat our conviction that Tribal Colleges deserve continued 
support. Their value has been proven, but their vision is not yet 
fulfilled'' (Native American Colleges: Progress and Prospects, Carnegie 
Foundation for the Advancement of Teaching, 1997). Tribal Colleges have 
been extremely responsible with the Federal support they have received 
in the last 18 years, and have proven themselves as a sound Federal 
investment. Therefore, we ask for your continued support.
    Thank you again for this opportunity to present our funding 
requests before this Subcommittee. We respectfully ask the Members of 
this Subcommittee for their continued support and full consideration of 
our fiscal year 2000 appropriations request.
                                 ______
                                 
 Prepared Statement of Dr. Sherry R. Allison on Behalf of the National 
                      Indian Education Association
    The National Indian Education Association (NIEA), the oldest 
national non-profit 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 2000 budget as it affects 
Indian education. NIEA has an elected board of 12 members who represent 
various Indian education programs and tribal constituencies from 
throughout the nation. The following are NIEA 19s funding 
recommendations for programs authorized under Labor, Health and Human 
Services and Education appropriations.
                        department of education
    President Clinton has proposed several new programs for fiscal year 
2000 in his 21st Century Schools initiative which focuses almost 
entirely on improving the human and physical infrastructure needs of 
public schools. The Administration's fiscal year 2000 proposals 
include: the second year of funding for Class Size Reduction which 
plans to add 100,000 new teachers; a new School Construction and 
Modernization effort; accountability measures for ending social 
promotion; expanding after-school activities and an American Indian 
Teacher Corps program which proposes to increase the number of American 
Ind ians entering the teaching profession by 1,000. Most of these, if 
funded, would mean additional education resources for Indian students 
attending public and Bureau of Indian Affairs (BIA) schools and those 
Indians entering postsecondary education. The last few appropriation 
cycles have shown several school construction/bonding proposals which 
have failed to be funded for various reasons.
Office of Indian Education (OIE)
    For fiscal year 2000, the Department of Education has requested $77 
million to fund Office of Indian Education's formula grants to Local 
Education Agencies (LEAs), partially restore discretionary funding for 
OIE and fund certain National Center for Education Statistics (NCES) 
surveys. This amount, in addition to LEA grants, would include a 
partial reinstatement of discretionary grant programs, minimal funding 
for the National Advisory Council on Indian Education (NACIE) and 
funding to carry out objectives of the Executive Order on American 
Indian and Alaska Native Education signed by President Clinton on 
August 6, 1999. In 1997, budget authority for OIE transferred from 
Interior to Labor, Health and Human Services, and Education 
Appropriations.
    Partial funding has been restored for OIE's discretionary program 
called Special Programs for Indian Children. NIEA requests the 
Committee's support for full reinstatement for other discretionary 
programs in adult education, adult literacy and Indian fellowships. The 
Administration's support for Indian students throughout its other 
programs is well established and funding is desperately needed by the 
Indian community, however, few Departmental initiatives are available 
for Indians attending postsecondary institutions or needing adult 
education services. This educational gap prevents full educational 
access generally assured other students. NIEA's fiscal year 2000 
request proposes to fill this educational inequity.
    The following are NIEA's recommendations regarding OIE funding by 
category:
    Formula Grants to LEAs.--For fiscal year 2000, the Administration 
has requested $62 million for OIE's formula grant program to public 
schools which is level funded with fiscal year 1999. Formula grants are 
authorized under Title IX, Subpart 1 of the Improving America's Schools 
Act of 1994. The Department estimates that this funding assists 461,000 
Indian students attending public and Bureau of Indian Affairs schools. 
In fiscal year 1999 there were 415,297 public school Indian students 
and 45,485 BIA Indian students receiving services through this program. 
The number of grants awarded in 1999 included: 1,120 public schools; 84 
BIA-grant/contract schools; and 70 BIA-operated schools for a total of 
1,274 grantees.
    Special Programs for Indian Children.--The fiscal year 2000 request 
is $13.3 million and is $10 million over fiscal year 1999. NIEA fully 
supports the initiatives being supported by this funding. The 
Administration proposes to fund a new initiative called the American 
Indian Teacher Corp that would be funded at $10 million. All Subpart 2 
programs are authorized by Title IX of the Improving America's Schools 
Act. The two currently active and proposed authorizations under Subpart 
2 include:
  --Improvement of Educational Opportunities for Indian Children 
        (Section 9121).--Under this authority, discretionary grants are 
        awarded to State Education Agencies (SEAs), local educational 
        agencies, Indian tribes and organizations, and institutions of 
        higher education to improve Indian student achievement through 
        such programs as early childhood education, drop-out 
        prevention, and school-to-work and secondary school higher 
        education transition programs. In fiscal year 1999, $1.4 
        million is available to award seven grants averaging $200,000. 
        The Administration requests level funding for fiscal year 2000. 
        NIEA fully supports this initiative.
  --Professional Development (Section 9122).--Under this authority, 
        discretionary grants are awarded to institutions of higher 
        education, SEAs, LEAs, Indian Tribes and organizations, and 
        BIA-funded schools in consortium with institutions of higher 
        education. The programs goal is to increase the number 
        qualified Indian individuals in professions serving Indian 
        people. Individuals receiving funding under this program are 
        required to secure employment in a field that benefits Indians. 
        In fiscal year 1999 the department will fund approximately 
        eight 3-year grants serving 270 students with $1.8 million 
        available for this program. The Administration requests level 
        funding for fiscal year 2000. NIEA requests funding this 
        category to a level of $3 million.
  --American Indian Teacher Corp (Section 9122).--This new program 
        would combine several program elements in a manner that 
        effectively trains Indian students to work in schools with 
        concentrations of Indian children and youth. Tribal colleges 
        would assume a major role under this program as would 
        postsecondary institutions that offer teacher training to 
        develop and ensure that programs reflect the needs of Indian 
        students. TCCCs would facilitate the recruitment effort working 
        with paraprofessionals already in the field in Indian 
        communities. The $10 million request would provide training for 
        an initial cohort of 500 prospective teachers. NIEA fully 
        supports this initiative.
    Special Programs for Indian Adults (Section 9131).--No funds are 
requested for this program in the fiscal year 2000 budget. This program 
was last funded in 1995 when it received $5.4 million for 30 projects 
to carry out educational programs specifically for Indian adults. NIEA 
has identified adult education for American Indians and Alaska Natives 
as one of the four priorities urgently needed by Indian Country. NIEA 
strongly recommends $5 million for reinstatement of the Special 
Programs for Indian Adults.
    National Activities.--The Administration requests $1.7 million in 
fiscal year 2000 to augment the Year 2000 National Center for Education 
Statistics (NCES) Schools and Staffing Survey (SASS) and other proposed 
research initiatives. The fiscal year 2000 request is $1 million over 
fiscal year 1999. The data collection effort would ensure that American 
Indian students are included in upcoming NCES surveys that will yield 
additional information on American Indian learners.
    NIEA appreciates the targeted increases for Indian education, but 
continues to be concerned that studies on American Indian and Alaska 
Native students are not already a part of the Department's data 
gathering effort. All other ethnic populations receive considerable 
research results without having their respective program budgets cover 
the cost. A 1996 report by the United States Commission on Civil Rights 
titled the ``Equal Educational Opportunity Project Series, Vol. 1'' 
found that Department of Education data on student characteristics was 
lacking among students from American Indian, Asian and other national 
backgrounds. The report stated that ``accurate, reliable and complete 
data on these ethnic groups are vital for the efforts of the education 
community to assess the needs of all student sub-populations.'' The 
report recommended that documents from the Department of Education's 
Office of Educational Research and Improvement (OERI), and other 
federal agencies that contain data utilized by policy and decision 
makers, should include information on these populations. NIEA echoes 
this position and recommends that the Department of Education make a 
concerted effort to provide research data for all ethnic categories 
when conducting studies and that they do so with funds requested 
through their own research department.
    Tribal College Executive Order.--At the release of the Department's 
budget, no numbers were available for funding recommendations for the 
Tribal Colleges Executive Order which was funded in fiscal year 1999 at 
$200,000. NIEA has been informed by the Department that other agencies 
will have their resources combined for the Order's implementation. We 
are not sure which agencies will be asked to contribute.
    The National Advisory Council on Indian Education (NACIE).--For the 
past four appropriation cycles, NACIE has been funded at $50,000. NIEA 
recommends funding for NACIE in the amount of $500,000 in order for it 
to re-establish an office within the Department of Education and hire 
full-time staff. NIEA is aware that appropriation language in the 
Senate Labor, Health and Human Services, and Education Appropriations 
Subcommittee Report from September, 1998 (S.R. 105-300) recommends 
funding NACIE at $200,000. NIEA supports this recommendation and 
encourages the Department to support our higher recommendation. We are 
concerned that the Administration's request would neglect the inclusion 
of one of its own commissions, particularly in its obvious concern for 
Indian education.
    NIEA requests that funding be made available for NACIE in light of 
its advisory role called for in the implementation of the Indian 
Education Executive Order signed by President Clinton in August, 1998. 
Since several requirements are to be completed during the first year, 
it is critical that NACIE re-establish an office to facilitate its 
executive order mission. NACIE currently has no permanent office and 
must rely on OIE staff to carry out minimal functions. Discussions with 
the NACIE Chair indicate that communications between NACIE and OIE 
staff have been minimal. NIEA has made every effort to involve NACIE in 
several Indian education initiatives including keeping the council 
updated on Executive Order functions.
    OIE Fellowship Program.--This program is not recommended for 
funding in the fiscal year 2000 request. In lieu of funding this 
program, NIEA recommends increasing the amount of funding available 
under OIE's Professional Development to $3 million in fiscal year 2000 
and $4 million in fiscal year 2001.
    OIE Administration.--Since fiscal year 1997 funding for OIE 
administration has been covered under the overall Department of 
Education's General Administration account. A budget footnote in the 
Education Department's 2000 budget request indicates that $2.8 million 
will be available for OIE administration. NIEA encourages the 
Administration and the Department of Education to use a portion of 
these funds for the reinstatement of the NACIE office.
              other doed indian education-related programs
    NIEA fully supports the Indian set-asides for the following 
Department of Education programs.
    Class Size Reduction Initiative.--The fiscal year 2000 request is 
$1.4 billion to support an estimated 38,000 teachers in early grades 
under the second year of the Administration's class size reduction 
plan. In fiscal year 1999, $1.2 billion was appropriated toward the 
seven-year plan in which 30,000 teachers are expected to be hired in 
the first year. The initiative's goal is to hire 100,000 new teachers 
over seven years. The Administration proposes to spend $7.3 billion 
over seven years to reduce class sizes particularly in urban areas. The 
Department estimates that approximately $3.5 million would be available 
in fiscal year 1999 and $4 million in fiscal year 2000 for American 
Indians and Alaska Natives. NIEA supports this initiative.
    Reading and Literacy Grants.--The fiscal year 2000 request is $86 
million and is $26 million over the fiscal year 1999 funded amount. 
NIEA fully supports the funding request for this program. NIEA is 
concerned, however, that there is no set-aside for BIA funded schools 
in the Reading Excellence Act. This 1.5 percent set-aside was included 
in the original America Reads program, but not in this Act. NIEA 
strongly encourages the committee to support a technical amendment that 
would include Indian tribes and BIA schools as eligible for a tribal 
set-aside of 1.5 percent.
    Goals 2000.--The fiscal year 2000 request is $491 million and is 
level funded with fiscal year 1999. NIEA supports the President's 
request for Goals 2000. One percent of Title III funds for Territories 
and BIA-funded schools are used to support comprehensive, systemic 
education reforms to improve teaching and learning. NIEA requests at 
least $3.2 million for BIA-funded schools in fiscal year 2000. 
Approximately 43,000 Indian students are to be served.
    Safe and Drug-Free Schools.--The fiscal year 2000 request is $591 
million and is $25 million over fiscal year 1999. NIEA supports the 
fiscal year 2000 request for Safe and Drug-Free Schools. State grants 
under this program total $439 million. BIA schools receive a one 
percent set-aside, which in 1999 was $5.3 million. A similar amount for 
Indian schools is to be available in fiscal year 2000. The fiscal year 
1999 request is expected to benefit approximately 40,000 Indian 
students. NIEA fully supports this initiative.
    School-To-Work.--The fiscal year 2000 request is $55 million and 
continues the phase-out of the School-to-Work program in 2001 with 
States or other vocational education dollars continuing the program. 
NIEA supports the President's request for this program. The fiscal year 
2000 request is $55 million with an equal request from the Department 
of Labor bringing the total program to $105 million. Fiscal year 1999 
funding was $125 million each Department. Up to one percent of program 
funds are set-aside for programs to help Indian youth acquire the 
knowledge and skills they need to make a smooth transition from school 
to career-oriented work and further education and training. The amount 
going to Indian students in fiscal year 2000, based on prior year 
allocations, should be $1.2 million.
    Title I, Grants to LEAs.--The fiscal year 2000 request is $6.6 
billion and is $300 million over 1999. Title I, Education for the 
Disadvantaged, covers four programs: Title I basic grants; Title I 
concentration grants; Title I targeted grants; and capital expenses for 
private school children. The fiscal year 1999 request for Title I Basic 
Grants was $6.3 billion, an increase of $788,000 (less than 0.1 
percent) over 1998. The BIA set-aside amount under the fiscal year 2000 
appropriation would be $51 million and serve approximately 25,000 
Indian students. NIEA supports the fiscal year 2000 funding 
recommendation.
    Title I, Comprehensive School Reform.--The fiscal year 2000 request 
is $150 million and is $30 million over fiscal year 1999. This Title I 
initiative funds research based school-wide reform. Under this 
proposal, the BIA would share a 1 percent set-aside with U.S. 
Territories. The BIA portion would be approximately $1 million. NIEA 
supports this request.
    Title I, Even Start.--The fiscal year 2000 request is $145 million 
and is $10 million over fiscal year 1999. The Even Start program 
supports local projects that blend early childhood education, parenting 
instruction, and adult education into a unified family literacy 
program. The fiscal year 2000 Indian set-aside amount is estimated at 
$2.2 million. NIEA fully supports this program.
    Eisenhower Professional Development State Grants.--The fiscal year 
2000 request is $335 million and is level funded with fiscal year 1998 
and fiscal year 1999. NIEA supports this program. The Eisenhower 
Professional Development program emphasizes improvement of instruction 
in mathematics, science and other professional development areas. The 
fiscal year 2000 Indian set-aside amount under this program is $1.7 
million, comparable with fiscal year 1999.
    Impact Aid.--The fiscal year 2000 request is $724 million and is 
$100 million less than fiscal year 1999. The Administration's request 
would provide the following allocations: Basic--$640 million; Special 
Education--$40 million; Heavily Impacted Districts--$0; Facilities 
Maintenance--$5 million; Construction, $7 million; and Payments for 
Federal property--$0. NIEA supports the National Association of 
Federally Impacted Schools (NAFIS) request of $944 million which 
proposes the following allocations: Basic--$754 million; Heavily 
Impacted Districts--$77 million; Special Education--$50 million; 
Payments for Federal property--$43 million; Construction--$14 million; 
and Facilities Maintenance--$6 million.
    Impact Aid compensates school districts in areas where large 
numbers of children live on, or are associated with, Federal property 
such as Indian reservations or military bases. In 1999 the Department 
estimated that over 124,000 Indian children living on Indian lands 
would generate approximately $300 million, well over the fiscal year 
1998 amount of $214.5 million for local school districts. In fiscal 
year 2000, the following estimates show how much support Indian 
students may rate by category for public schools: Basic--$296 million; 
Special Education--$20 million; and School Construction--$4 million. 
The total fiscal year 2000 amount Indian students may generate under 
the Administration's request is $320 million.
    Education for Homeless Children and Youth.--The fiscal year 2000 
request is $31.7 million and is $2.9 million over 1999. NIEA supports 
the fiscal year 2000 request. Under this program, the BIA receives a 
one percent set-aside for homeless students served by the BIA. This 
amount is $100,000.
    Bilingual Education.--The fiscal year 2000 request is $415 million 
and is $35 million over 1999. NIEA supports the Administration's 
request for Bilingual Education. BIA schools are eligible to apply for 
Bilingual Education funding directly through the Department of 
Education. In fiscal year 1999 the amount of grants to BIA schools was 
$749,000. Funding is distributed through grants to school districts to 
address the severe academic problems of school children who are limited 
English proficient. The Department estimates that 182,000 American 
Indian students in BIA and public schools will receive bilingual 
education assistance in fiscal year 1999. Under previous allocations, 
the Bilingual education program has included comprehensive reform 
funding designed to retain native languages of Indian communities. NIEA 
strongly encourages continuance of this effort.
    Special Education Grants to States.--The fiscal year 2000 request 
is $4.3 billion and is $4 million over 1999. The Individuals with 
Disabilities Education Act (IDEA) was reauthorized in 1997 as Public 
Law 105-17. BIA schools receive 1 percent for the education of children 
5-21 years with disabilities who live on reservations. An additional 
.25 percent is allocated for distribution to tribes and tribal 
organizations to provide for the coordination of assistance and related 
services for children aged 3-5 with disabilities in reservation 
schools. The set-aside amount in the fiscal year 2000 budget request is 
$52.9 million and is $7 million over 1999. Approximately 7,000 Indian 
students with disabilities would be served with Special Education 
funding. NIEA still strongly supports a set-aside amount of 1.5 
percent. NIEA supports the increased amount.
    Special Education Grants for Infants and Families.--The fiscal year 
2000 request is $390 million and is $20 million over fiscal year 1999. 
The Indian set-aside under the request is $4.8 million and is $300,000 
over 1999. NIEA supports the $4.8 million request for Grants for 
Infants and Families program. BIA schools receive 1.25 percent for 
distribution to tribes and tribal organizations for the coordination of 
assistance in the provision of early intervention services to children 
aged birth to 2 years.
    Vocational Rehabilitation State Grants.--The fiscal year 2000 
request is $2.3 billion and is $35 million over fiscal year 1999. NIEA 
supports the Presidents fiscal year 2000 request. Within the Vocational 
Rehabilitation State Grants program is the Grants to Indians section 
that is recommended for funding in the fiscal year 2000 request at 
$23.4 million. NIEA fully supports the Grants to Indian program. Funds 
for this program are based on a .5 percent set-aside. These critical 
dollars provide vocational rehabilitation services to 7,000 American 
Indians with disabilities living on reservations.
    Education Technology.--The fiscal year 2000 request is $570 million 
and is $20 million less than 1999. The program includes a Technology 
Literacy Challenge fund, Technology Innovation Challenge Grants, and 
Regional Technology in Education Consortia. American Indians are 
estimated to benefit with approximately $2.3 million in Technology 
Literacy Challenge funds in fiscal year 1999. NIEA supports the higher 
fiscal year 1999 funding level for this program.
    Protection and Advocacy of Individual Rights.--The fiscal year 2000 
request is $10.9 million and is level with fiscal year 1999. The 
request would support systems in each state to protect and advocate for 
the legal and human rights of individuals with disabilities. These 
systems pursue legal and administrative remedies to ensure the 
protection of the rights of individuals with disabilities under federal 
law. NIEA supports the Indian set-aside in fiscal year 2000 is 
estimated at $75,000 and is level with fiscal year 1999.
    Fund for the Improvement of Education (FIE).--The fiscal year 2000 
request is $139.5 million and is $7.5 million less than fiscal year 
1999. This program supports a variety of activities aimed at 
stimulating reform and improving teaching and learning. FIE also funds 
through the States a portion of the Title I Demonstrations of 
Comprehensive School Reform which provides resources and incentives to 
apply research findings and strategies to help turn around failing 
schools. NIEA requests the fiscal year 2000 Indian set-aside amount of 
$81,000 and is level with fiscal year 1998 and fiscal year 1999.
    Alaska Native Education Equity.--The fiscal year 2000 request is 
$10 million and is level with fiscal year 1999. NIEA fully supports the 
fiscal year 2000 request. The fiscal year 2000 proposal will fund an 
Educational Planning, Curriculum Development, Teacher Training, and 
Recruitment program at $5.1 million; a Home-based Education for Pre-
School Children program at $3.8 million; and a School Enrichment 
program at $1.1 million. The Alaska Native Education Equity program 
funding request provides funding for continuation of projects that 
address the barriers preventing Alaska Native students from achieving 
to higher academic standards.
    Vocational and Adult Education.--The fiscal year 2000 request is 
$1.1 billion and is recommended at $9 million over 1999. Under the 
Basic Grants program there is an Indian and Hawaiian Natives set-aside 
in the amount of $15.4 million that is recommended at level funded with 
fiscal year 1999. Additionally, there is a Tribally Controlled 
Postsecondary Vocational and Technical Institutions program recommended 
at $4.1 million, level with fiscal year 1999. NIEA fully supports 
funding for these programs as requested by the American Indian Higher 
Education Consortium (AIHEC).
                department of health and human services
Administration for Children and Families
    Head Start.--The fiscal year 2000 request is $5.3 billion and is 
$607 million over 1999. NIEA supports the fiscal year 2000 budget 
request. The Indian Head Start program under the fiscal year 2000 
budget would receive $146.6 million which is $25.3 million over 1999. 
In 1998, over 21,600 American Indian and Alaska Native children 
attending Head Start If the budget request is approved, Indian 
communities should see an increase in Indian Head Start programs and 
enrollment. Currently there are 150 Indian Head Start programs serving 
Indian communities.
    If enacted, this increase would be the largest in history, and 
would enable Head Start to serve an additional 42,000 children and 
bring the total national enrollment to 877,000 children. Under the 
Clinton administration, funding for Head Start has already increased by 
68 percent, and enrollment has increased by over 200,000 children, 
reaching 835,000 children in fiscal year 1999. The fiscal year 2000 
budget request would increase funding to nearly double the level when 
the President took office, keeping continues the Administration's 
commitment to expanding the Early Head Start (EHS) program that serves 
low-income families with children under three years old. The fiscal 
year 2000 budget request would serve 7,000 more EHS children, well on 
the way to the goal of doubling the program by 2002. The increase also 
includes approximately $250 million in new funds to continue to improve 
program quality.
                                 ______
                                 
   Prepared Statement of Hon. Sharpe James, Mayor, Newark, New Jersey
    Mr. Chairman and Members of the Subcommittee: Thank you for giving 
me the opportunity to submit testimony about an innovative science 
education project being undertaken by the Newark Museum that is 
critical to the people of Newark, New Jersey. Newark is truly at a 
crossroads--we are a City with all of the problems of many major urban 
centers, but we are also a City with vast potential. We have begun to 
turn the corner--there is a renewed vitality and sense of optimism in 
Newark.
    The Newark Museum seeks $2.0 million to support the Science 
Initiative. The City of Newark has committed $1.7 million dollars to 
date toward the preparatory collections care necessary to make this 
initiative possible. Additionally, The Museum plans a $5 million dollar 
operating endowment fund based upon a public/private partnership to 
assure adequate on-going support, of which $1.2 million has been raised 
to date. Research has shown that the ongoing maintenance cost of 
science galleries is several multiples of that of art galleries.
    The Newark Museum is recognized as one of the nation's leading 
cultural institutions. It is located in Newark, New Jersey's largest 
city, and within Essex County, the State's most densely populated. The 
Museum's constituency is economically and ethnically diverse, 
reflecting the distinctive character of the city, northern New Jersey 
and the metropolitan region. In 1998, The Newark Museum served an 
audience of 462,000 children and adults.
    Science has been a part of The Newark Museum since the donation in 
1912 of local physician Dr. William Disbrow's collection of natural 
science specimens. Subsequently, the Mini Zoo was added as part of the 
Junior Museum's Nature Corner in 1926, and the Dreyfuss Planetarium in 
1953, to expand the visitor's learning experiences and appreciation for 
the sciences. The Newark Museum's natural science collections of 74,000 
specimens in the areas of geology, botany and biology are being 
utilized today in programs that allow for participatory and inquiry-
driven experiences, to engage visitors in meaningful science learning. 
Science-related programs draw more visitors to The Newark Museum than 
any other offering, despite the fact that the science galleries have 
been closed for more than a decade. Realizing the opportunity to 
attract larger audiences and better serve Newark and New Jersey 
residents, the Museum has embarked on a new science initiative. It will 
enable the Museum to reopen the science galleries and builds upon the 
Museum's proven track record of excellence in interdisciplinary arts 
and humanities programs.
 the newark museum new science education initiative: reshaping science 
                               education
    The Newark Museum's New Science Education Initiative was 
conceptualized and is being executed by a dedicated team of community-
based educators, scientists and business people working alongside 
Museum trustees and staff. Members of the Science Team bring nationally 
recognized expertise with an understanding of the particular needs of 
communities in Newark and throughout New Jersey.
    The plan calls for the creation of a major permanent exhibition 
based upon its natural science collection. The exhibition, called 
Making Sense of the Natural World, will explore scientific phenomena 
through natural history specimens and live animals. Museum audiences 
will participate in mindful science learning through stimulating and 
engaging experiences that integrate the collections, Dreyfuss 
Planetarium and Mini Zoo. This gallery, along with the Museum's plan to 
institutionalize cohesive science education programs parallel to its 
distinguished art and culture programs, is the core of The Newark 
Museum Science Education Initiative.
    The cohesive science education at The Newark Museum will entail 
greater use and dissemination of our science gallery, planetarium and 
live animal resources, thus providing new learning opportunities for 
individuals, families, schools, and community organizations. This 
initiative also allows us to safeguard the thousands of scientific 
specimens, so critical to its success, in proper housing both in the 
exhibition and in technologically advanced, environmentally appropriate 
behind-the-scenes storage
     In planning the new Science Initiative, Museum staff and Trustees 
have been guided by the principles contained in Goals 2000 and by New 
Jersey's recently adopted Core Curriculum Content Standards for K-12 
education. Critical thinking, mathematical, and scientific 
understanding will be fostered as visitors question, experiment, 
compare, and analyze real specimens from the Museums science 
collections, and participate in planetarium and Mini Zoo programs 
designed to effectively communicate complicated and abstract science 
concepts.
    The science plan will also include a Science Resource Laboratory 
for teachers, which will provide them with a space to research and test 
curriculum ideas for hands-on activities in the natural and planetary 
sciences. Based on the results of research conducted with Newark 
educators, these monthly multi-session and one-time in-service teacher 
professional development workshops will provide teachers opportunities 
to become more comfortable teaching science and meet the state-mandated 
re-certification requirements. The same Science Labs will be used by 
school classes and in after school and weekend programs to reinforce 
science concepts that are introduced in Making Sense of the Natural 
World, the projected new exhibition.
    For high school students from Newark and other state urban 
districts, the Science Initiative calls for a Science Career Ladder. 
These innovative programs are designed to provide ``at-risk'' teens 
with critical exposure to careers in science and to teach workplace 
ethics and behavior. This builds upon an already successful YouthAlive 
program at the Museum. In addition, the plan will provide a Science 
Internship Program, which will offer students a year-long experience in 
scientific research, collections management, and the planetary sciences 
at The Newark Museum.
    A major focus of the plan is The Newark Museum Dreyfuss 
Planetarium, the first in New Jersey. This summer, the Planetarium will 
receive a new star projector, a Zeiss ZKP3 funded by the City of Newark 
in recognition of the major contribution that Planetarium programs have 
made to the education of the city's youth. The ZKP3 is the ultimate 
machine to teach and demonstrate any curriculum related to astronomy 
and space travel. Planetariums, better than any other facility, are 
unsurpassed at simulating the night sky and the universe. The visitor 
is immersed in an environment which saturates the senses. The 
planetarium staff is investigating new ways in which a traditional 
planetarium can evolve to be a model to effectively serve Newark and 
New Jersey teachers and students, including the possibilities of 
distance learning and other innovative electronic methods of extending 
its reach beyond the domed theater. Recent collaborations with 
physicists at Rutgers University and New Jersey Institute of Technology 
have convinced us that the Planetarium can actively participate in a 
range of high technology activities, including serving as a public 
dissemination point for the extraordinary images of the Earth that NASA 
has collected.
    The Museum is also formulating new approaches and designs for 
updated animal habitats in the Mini Zoo. The majority of these 
dwellings are in excess of ten years old, and may not use animals as 
effectively as possible in telling an ecologically-oriented story. The 
Mini Zoo will be upgrading its enclosures, which will likely offer 
mixed-species exhibits. This will allow for a more comprehensive 
examination of climate areas like deserts and rain forests and 
encourage displays on such topics as family style, camouflage, and 
biodiversity. New animals will be acquired that illustrate these themes 
most effectively. The Mini Zoo provides critical training for college 
students in captive wildlife management and science education. It 
offers programs in humane treatment of animals, called Don't Get that 
Exotic Pet Yet. These include such topics as why these kinds of animals 
do not make good household pets, care and maintenance of exotic pets, 
selecting a veterinarian, what to look for in a pet shop, and the 
illegal pet trade. Mini Zoo school programs, like all science programs, 
are designed to address Core Curriculum Content Standards, and address 
such issues as adaptation, ecosystems and taxonomy.
 the new natural science exhibition, making sense of the natural world
    This gallery, intended primarily for a family and elementary school 
audience, will be one of the few in the country to combine the best of 
natural history museums and science centers by marrying actual 
biological, geological and botanical specimens with hands-on, inquiry-
driven activities.
    In this exhibit, visitors will experience the wonder of nature's 
diversity and then look at collections the way scientists look at them. 
They will begin to learn that natural history specimens individually 
and collectively provide volumes of information about science. They 
will understand how ordering the natural world led to the realization 
that the Earth is constantly changing and that life adapts to those 
changes. Moreover, they will appreciate that evidence of those changes 
is as close as their own backyard.
    Recurring throughout the exhibit will be the concepts of bio-
complexities and dynamic geological forces as fundamentals of the 
natural world. The museum's striking collections will be the vehicle 
for explaining--making sense of--these concepts as they relate to 
living and non-living systems, globally and locally.
    The exhibition will be divided into five sections. The first is an 
Introductory Gallery, called the Diversity Arc, in which visitors will 
realize that by uncovering relationships within groups of specimens, 
scientists have been able to order and make sense of the diversity 
around them. Visitors will meet their video host at the first of 
several stations that are located throughout the exhibit. The host is a 
museum scientist who will guide visitors' observations and enhance 
their understanding of the exhibit's concepts. The host is one of the 
ways the exhibit will depict people as part of nature and interpreters 
of it. It will serve to put the exhibit components into context for the 
visitor.
    In the second gallery, The Dynamic Earth: Forces of Change, sound 
and light will give visitors the feeling of being present at the 
beginning of the Earth. A short video will elaborate on the formation 
of the planet, plate tectonics and climate. Video animation will be 
used to communicate abstract geological concepts. Specimens will be 
displayed that illustrate the products of geological activity, climate 
change and glacial activity. Mineral and rock specimens will be chosen 
for the stories they can tell. Fossils, such as Glossopteris, found on 
today's widely separated continents, will show how tectonic forces 
split the continent on which the fern once grew.
    Next, the visitor will encounter Life Adapts to Change, which will 
show the tremendous variety of environments on the Earth--the 
consequences of where continents and oceans are located today, and 
climate. Specimens from the African Savannah will show how different 
species have adapted to a unique biome, the grassland, through color, 
behavior and structure. The exhibit also contains an interactive 
natural selection component explaining the process. The remainder of 
the exhibit will illustrate two different kinds of adaptations to the 
environment: structural and behavioral. For example, grazing animals, 
such as deer and bison, have evolved teeth and jaws that can chew tough 
grasses. Sea otters have evolved tool-using skills to open clams by 
striking them on rocks. Concepts that intersect with the Museum's Mini 
Zoo will be presented and the connections made.
    At this junction, visitors will have the choice of either 
continuing to Collections: Tools of Knowledge or Diversity in Your 
Backyard: New Jersey Highlands. In Collections: Tools of Knowledge, 
visitors will discover that science is a dynamic, ongoing activity that 
uses specimens and collections as tools to make sense of the natural 
world. In this section, visitors explore how science is actually 
conducted. Scientists will tell their own story of how they collect 
data and analyze it, and there will be equipment which visitors can 
manipulate in activities designed to mimic the work the scientists 
perform. For most of the population, science is an abstract art, almost 
like magic. This area of the exhibit will assign the tasks of the 
scientist to the visitor, making the process of science much more 
concrete.
    The final, and largest, section is called Diversity in Your 
Backyard: New Jersey Highlands, which will feature a re-creation, in 
the form of a walk-in diorama, of an oak-hickory forest biome of the 
New Jersey Highlands. It is a demonstration of how and why the 
interdynamics of geology and biology creates an ecosystem. Using New 
Jersey as a backdrop, this gallery will provide specific examples of 
Dynamic Earth and Adapting to Change in a recreated environment of the 
New Jersey Highlands. This will allow visitors to apply the complex 
ideas introduced earlier to examples familiar to them and to make sense 
themselves of the natural world. A tented ``field station'' will offer 
opportunities for hands-on activities. The story has several chapters: 
a Lake Story; Local Adaptation Stories; Microworld of the Pond Story; 
Greenhouse story; Geologic Processes in New Jersey story, which 
includes geologic processes as seen in the rock formations of the 
simulated cave; the Watershed Story; and the History Story, which will 
show how this area changed over the past 20,000 years.
    We hope that you will give every consideration to funding this 
project.
                                 ______
                                 
 Prepared Statement of Tom Meier, President, Elmira College, Elmira, NY
    Mr. Chairman, thank you for this opportunity to submit testimony 
for the record regarding Elmira College's proposed Technology 
Enhancement Initiative.
    Today, unlike any other time in history, we have a substantial 
opportunity to apply the information age technologies to schools that 
are so effective outside the classroom for educational purposes. For 
schools to make the most of this opportunity, they must rethink 
education from the ground up.
    The power of information technologies to reshape education is 
already becoming unmistakable. In scattered locations around the 
country, schools are using state-of-the-art technologies and 
interactive multi-media to engage students more actively in learning 
and to teach them skills they will need to thrive in an information 
based workplace and world. This is particularly true with non-
traditional students who have little if any access to traditional 
classrooms and educational services.
    As information age infrastructure is developed, more and more 
students and teachers will gain access to a global web of information 
and exchange ideas, services and education globally.
    The Internet and other information technologies are bringing 
interactive instruction to schools in our cities and suburbs. 
Importantly, the past several years have witnessed a stronger focus on 
providing those information technologies in rural areas of the country. 
These technologies are allowing students to build ``communities'' with 
their counterparts around the world and create lifelong beneficial 
links between schools and the communities around them.
    Taking advantage of this new capability will require profound 
changes in the roles of teachers, students and schools. Instead of 
being the repository of knowledge, teachers will be guides who will 
help students navigate through electronically accessible information. 
They will use the new technologies to build networks with each other, 
with parents and students, with academic and industrial experts and 
with other professionals.
    In order to ensure that students (K-12, undergraduate, graduate, 
continuing education or professional development students, students in 
rural areas) receive the full potential of the technology age, the 
technological access must exist in flexible locations and provide 
continuous access to their extended communities. Equally as important, 
teachers must receive extensive training in how to use existing and 
emerging information technologies and how to design and implement 
appropriate curricula for a state-of-the-art 21st Century classroom.
    To make technology a viable instructional and professional 
development tool requires schools to have enough computers to provide 
full easy access for all students including students with disabilities.
    Institutions of higher education are central to the national effort 
to ensure that all students and teachers are equipped to take full 
advantage of the technology era. By providing education, training, and 
technical assistance these institutions can work in partnership with 
local school districts, human service agents and professionals to 
address problems associated with the rapid onset of the information 
age, including: educational, economic and social infrastructure of 
their surrounding communities.
    Elmira College is an institution of higher education that accepts 
that responsibility willingly, recognizing the benefit to its students, 
students in surrounding school systems and community colleges, and 
individuals in nearby communities in need of continuing education or 
professional development. As such, it is implementing its ``Technology 
Enhancement Initiative'' to address its own and regional educational 
and technology training needs.
      the ``technology enhancement initiative'' at elmira college
    As it approaches the 21st Century, Elmira College, in Elmira New 
York, stands at an important crossroads in the development and 
expansion of its educational resources. To ensure its continued 
strength as a four-year institution of higher education the College is 
proposing the implementation of its ``Technology Enhancement 
Initiative'' to relocate and improve its technology infrastructure.
    This initiative will address the ever-growing need in the southern 
tier of New York and northern tier of Pennsylvania for access to higher 
education, teacher technology education and training and professional 
development services. It will provide the College the opportunity to 
expand its technology resources and to meet its own and regional 
technological and services demands.
    Elmira College proposes to establish a partnership with the federal 
government that will:
  --Relocate, consolidate and improve all student and administrative 
        computing services from McGraw Hall, which is handicapped 
        inaccessible, to the Gannett-Tripp Library which is handicapped 
        accessible;
  --Upgrade existing ``hub'' hardware to state-of-the-art technology 
        which will be able to meet and manage the demands of the 
        upgraded system; and,
  --Wire every dormitory, classroom and administrative meeting room as 
        well as every faculty, academic, and administrative office 
        building for direct access to the Gannett-Tripp Library, the 
        Steele Memorial Public Library and an interface with the local 
        public library system and with the Internet.
    As a result of the improvement to its technological infrastructure, 
Elmira College will have the opportunity to expand existing and 
implement several new educational and training programs in partnership 
with local school systems and human service agencies. Specifically, the 
initiative will enable the College to:
  --Offer access to higher education courses in 12 rural and 
        underserved counties and 21 K-12 school districts (58,308 
        students), 8 community colleges and a variety of community 
        sites via distance learning;
  --Offer access to Elmira College library resources, including the 
        federal depository at the College, at a variety of community 
        sites via distance learning to underserved counties;
  --Provide teacher technology education and training both on and off 
        campus;
  --Provide expanded professional development and technology education 
        and training services;
  --Provide leadership and technical assistance to local K--12 systems 
        in the development of state-of-the-art technologically advanced 
        classrooms and prepare its Education students (future teachers) 
        and regional teachers to teach effectively in this 
        technologically advanced era.
    In addition to the obvious educational benefits that the Elmira 
College ``Technology Enhancement Initiative'' will have for the College 
and its students, there are several significant benefits for teachers 
in the regional community.
    As a result of the Technology Enhancement Initiative, Elmira 
College will have the opportunity to work in partnership with regional 
school systems to address the education and training needs of their 
teachers and staff.
    Elmira College will work to identify technology education and 
training expertise in the region and the nation and work with local 
school districts to develop critical professional linkages needed for 
the local school system to take full advantage of that expertise for 
their students.
    In addition, as part of its own curricula, Elmira will provide 
expanded in-depth technology education and training for students in its 
Masters of Education programs.
    The Technology Enhancement Initiative will provide Elmira College 
the ability to offer these teacher education and training courses 
through any of its distance learning capabilities to teachers in the 
classroom, on-site at their own schools, at local libraries, community 
colleges or even in the home. Graduate students at Elmira will continue 
their training within the local schools, but will have an increased 
ability to conduct classroom observations, information exchanges and 
training as a result of the Technology Enhancement Initiative.
    To do so, the College will expand existing and implement new 
education, training and professional development programs, including 
courses such as Computers in Education, Interactive Media for 
Educators, The Internet for Educators, Video Production for Educators, 
and Microcomputer Applications for Educators. Finally, it will provide 
the College with the opportunity to play a leading role in improving 
the social and economic infrastructure of the region.
    The Technology Enhancement Initiative will create an expanded 
opportunity for cooperation in the provision of higher education 
courses between Elmira College and local community colleges. It will 
help those institutions to provide timely and relevant programming at 
the same time it helps to prevent unnecessary duplication of academic 
programs and/or courses at Elmira or the community colleges.
    As it is proposed, the relocation, expansion, and consolidation of 
all computing functions at Elmira College will provide three methods of 
distance learning in the future, including:
  --Computer Based Research
  --Internet Conferencing
  --Compressed Video
    Students and professionals in the field will have the ability to 
access education, training or professional development from home (if 
the connection exists) from libraries, other designated community sites 
or from any of the eight sites where Elmira currently provides minimal 
programming including:
  --Bath
  --Corning
  --Ithica
  --Owego
  --Penn-Yan
  --Watkins Glen
  --Rome
  --Syracuse (adult education)
    Elmira College will have the ability to share faculty experiences 
across institutions and establish partnerships on select courses with 
regional community colleges, including general education courses, 
courses to support selected major requirements, and coursework 
providing a valuable supplement to existing offerings. Elmira College 
currently holds articulation agreements with three regional community 
colleges that will be expanded as a result of the Technology 
Enhancement Initiative. Those institutions include:
  --Tompkins Cortland Community College
  --Corning Community College
  --Broome Community College
    To enable the completion of this important initiative, Elmira 
College is seeking $4,399,000 million in federal support. To date, the 
College has invested $500,000 in campus infrastructure in preparation 
for the implementation of this initiative (these dollars are not 
counted as part of the official project cost, but are calculated into 
the College's contribution).
    The College is firmly committed to the completion of the project 
and the implementation of these critical education and training 
programs. Therefore, the college plans to invest an additional $1.5 
million in this project bringing its total investment to $2 million, or 
thirty-four percent of total project cost. Total project cost is 
$5,923,680 million.
    Mr. Chairman, this initiative is critical to the long-term 
viability of Elmira College as well as the regional the K-12, 
undergraduate, graduate, continuing education and professional 
development systems in the southern tier of New York and the southern 
tier of Pennsylvania. We look forward to working with you in support of 
this initiative in fiscal year 2000.
    Again, thank you for the opportunity to present this testimony for 
the record.
                                 ______
                                 
  Prepared Statement of John Kelly, Vice President, Recording for the 
                           Blind and Dyslexic
    Mr. Chairman, Mr. Harkin, Members of the Subcommittee: I am John 
Kelly, Vice President of Recording for the Blind & Dyslexic (RFB&D), 
whose headquarters are located in Princeton, New Jersey, with thirty-
three recording studios throughout the United States. It is on behalf 
of RFB&D that I submit this statement 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. 
Additionally, it is to help provide them with the best education 
possible, in order to facilitate their entry into today's job market.
    First, I want to thank the members of the subcommittee for the 
continuous support that you have given RFB&D since our first federal 
assistance, which began in 1975. This support, plus the support we 
receive through private philanthropy, allowed us this year to circulate 
more than 233,000 textbooks to approximately 55,000 borrowers. 
Increased federal support has been key to our ability to reach an 
increasing number of students, including an increasing number of 
severely dyslexic students.
    RFB&D was founded in 1948 as a non-profit service for returning 
blind veterans of World War II--a G.I. Bill of Rights for blind 
veterans, as it were--and has grown into a national, private, 
volunteer-based organization serving as the national education library 
for people who cannot read standard print because of a disability. 
Although its headquarters are in Princeton, New Jersey, its volunteer 
readers are spread throughout the United States, as are its library 
users.
    RFB&D distributes textbooks and other educational materials in 
accessible audio and digital sound and text formats. Our tape and 
digital library, with more than 77,000 titles, continues to grow, and 
is constantly updated to meet the needs of our student and professional 
users. Our books are provided free of charge to students of all ages, 
after a small registration fee, with students permitted to borrow as 
many texts as required for their course of study.
    Our request to the subcommittee for fiscal year 2000 is for an 
appropriation of $7,000,000, an increase of $500,000 over the amount 
provided by the Congress last year. This amount is $1,000,000 more than 
requested in the president's budget. Federal grant support, which is 
approximately 25 percent of our total budget, will continue to be used 
for two significant initiatives.
    1. Expanding the number of student borrowers through an aggressive 
outreach program: By the end of the year 2000, only 20 months from now, 
the number of borrowers dependent on us for their textbooks is expected 
to exceed 75,000 students. Since these students are entitled by both 
the Americans with Disabilities Act (ADA) and the Individuals with 
1Disabilities Education Act (IDEA) to relevant educational materials, 
RFB&D believes that our federal appropriation represents an appropriate 
contribution towards this cost. Our 4800 highly trained readers are 
volunteers knowledgeable in the field in which they read; therefore, 
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.
    2. Converting RFB&D's recording system from analog tape to digital 
format: RFB&D is well along in the multiyear project to convert its 
recording operations to the new digital technology. This change will 
have two principal advantages. First, it will allow visually impaired 
and dyslexic students to search and move around within a book in the 
same way that sighted students do. Second, it will permit books to be 
circulated on CD-ROM and electronically through the Internet. During 
1999, RFB&D has begun the process of revamping its 33 recording 
studios.
    RFB&D notes with pride that in making this request, we can report 
that the expanded service and private fundraising goals set in the 
financial management plan presented in January 1997 are being met. 
Between fiscal year 1996 and fiscal year 1998, the number of borrowers 
expanded by 40 percent and private cash contributions increased by 45 
percent. This has only been possible through the untiring work and 
commitment of our volunteers, our career staff and this subommittee. We 
are pleased that we have been able to meet or exceed the performance 
standards which we set for ourselves in this plan.
    Mr. Chairman, RFB&D and its student users are grateful for the 
support the subcommittee has provided in the past, and are hopeful that 
you will be able to approve our request of $7 million for fiscal year 
2000. This level of support will assist RFB&D as it continues our joint 
efforts to serve the educational needs of disabled students throughout 
the United States.
                                 ______
                                 

                            RELATED AGENCIES

    Prepared Statement of the National Minority Public Broadcasting 
  Consortia: National Asian American Telecommunications Association; 
   National Black Programming Consortium; Latino Public Broadcasting 
    Project; Native American Public Telecommunications; and Pacific 
                      Islanders in Communications
    The National Minority Public Broadcasting Consortia (Minority 
Consortia) submits this statement on the fiscal year 2002 appropriation 
for the Corporation for Public Broadcasting (CPB). Our primary missions 
are to bring a significant amount of programming from our communities 
into the mainstream of public broadcasting. In summary, our budget 
recommendations are that Congress:
  --Support the Administration's request of $350 million for CPB for 
        fiscal year 2002, a $10 million increase over fiscal year 2001.
  --Recommend an increased allocation of CPB funds in fiscal years 
        2000, 2001, and 2002 for the National Minority Public 
        Broadcasting Consortia to expand our programming capacity and 
        to assist independent minority producers in converting to 
        digital production.
    The National Minority Public Broadcasting Consortia consists of the 
Asian American Telecommunications Association, the National Black 
Programming Consortium, Native American Public Telecommunications, 
Pacific Islanders in Communications and, currently, the Latino Public 
Broadcasting Project.
    A federal appropriation of $350 million as requested by the 
Administration for CPB would be a reasonable, albeit modest, 
contribution toward our national treasure of public broadcasting. The 
debate of the past several years regarding public television and public 
radio has highlighted the great esteem in which it is held. We urge 
Congress to provide at least as much as has been requested by the 
Administration for CPB for fiscal year 2002.
    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 quality programming 
for national audiences. Additionally, public television is universally 
available, unlike costly cable channels. In 1994, CPB initiated 
research among Asian American and Native American communities which 
documented that respondents felt their communities were negatively 
stereotyped on commercial television that that public television had 
more realistic portrayals. (Reaching Common Ground: Public 
Broadcasting's Services to Minorities and Other Groups, July 1, 1994, 
pages 41-41 of the Appendix). 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 and community groups and tribal 
organizations. Earlier CPB surveys of Latino and African American 
communities showed similar findings.
    Increased Support for Multicultural Programming and the Minority 
Consortia.--Among the reasons why there should be increased funding for 
multicultural programming and for the work of the Minority Consortia 
are:
  --CPB has received increased appropriations for the past two years 
        and has the resources to increase its support for multicultural 
        programming.
  --It would be in keeping with the stated Congressional support for 
        multicultural programming and for the role of the Minority 
        Consortia in nurturing and producing this programming for 
        public broadcast.
  --The Minority Consortia organizations are in the best position to 
        encourage and assist producers in our communities in the 
        development of programming for public broadcast.
    This is the Optimum Time to Fulfill CPB's Mission of Diversity.--
The Congressional urging of CPB to increase its support for the 
Minority Consortia and for multicultural programming combined with two 
years of significant funding increases for CPB make this an ideal time 
for significant progress. It may be now or never.
    We certainly appreciate the support the Minority Consortia has 
received from Congress and from this Subcommittee in particular. Since 
1988, ten Congressional authorizing and appropriations reports have 
expressed support for the Minority Consortia and/or for increased 
multicultural programming on public television.\1\
---------------------------------------------------------------------------
    \1\ 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); 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); House Report 105-205, report of the 
House Appropriations Committee on the fiscal year 1998 Labor, HHS, 
Education Appropriations Act (fiscal year 2000 CPB funding); and House 
Report 105-635, report of the House Appropriations Committee on the 
fiscal year 1999 Labor, HHS, Education Appropriations Act (fiscal year 
2001 CPB funding).
---------------------------------------------------------------------------
    The Minority Consortia organizations, who receive jointly about 
$1.4 million in institutional support from CPB and who also administer 
the $3.2 million Multicultural Program Fund, have shared in past CPB 
budget reductions. Both our institutional support funds and the 
Multicultural Program Fund monies were reduced in fiscal years 1997and 
1998 when CPB appropriations declined. Our fiscal year 1999 funding was 
the same as in the prior year. Our institutional support and the 
Multicultural Program Fund combined equal less than 2 percent of the 
CPB budget.
    Now, however, we are entering a time period for which Congress has 
appropriated increased funding for CPB. The CPB fiscal year 2000 
appropriation, which has not yet been distributed, is $300 million, a 
$50 million increase over fiscal year 1999. And the fiscal year 2001 
appropriation is $340 million, an increase of $40 million over fiscal 
year 2000 and a $90 million increase over fiscal year 1999.
    So already appropriated is a $50 million increase for fiscal year 
2000 and an additional $40 million increase on top of that for fiscal 
year 2001. And what did Congress say about funding for the Minority 
Consortia for those two years? In the fiscal year 1998 House 
Appropriations Report (fiscal year 2000 CPB funding), Congress stated: 
``The Committee supports CPB's commitment to maximize resources with 
the goal of increasing multicultural programming for public television 
by formalizing partnerships among the Minority Consortia organizations, 
the CPB, the Public Broadcasting Systems, America's Public Television 
Stations, and individual television stations.''
    And in the fiscal year 1999 House Appropriations (fiscal year 2001 
CPB funding) Congress stated: ``The Committee recognizes the importance 
of developing multicultural programming through the National Minority 
Public Broadcasting Consortia.''
    The Minority Consortia has often noted in its Congressional 
testimony the changing demographics of our nation. It is common 
knowledge that we are rapidly becoming a more multicultural society, 
but political leverage is exceedingly slow to catch up with this 
reality. While collectively the communities we represent already 
comprise nearly 30 percent of the nation's population, that percentage 
is expected to be nearly 50 percent by the year 2050.
    The testimony of CPB President Bob Coonrod before this Subcommittee 
on March 23, 1999 focused on the need to increase the diversity of 
public broadcasting offerings, including multicultural programming. We 
applaud CPB's public discussion of this need, and intend to work 
collaboratively with them and the entire public broadcasting community 
to help make this a reality. But in order to do this, the amount of 
funding allocated for the development of multicultural programming must 
substantially increase.
    Digital Conversion Assistance.--Mr. Coonrod's March 23rd testimony 
also addressed the opportunities which digital technology will provide 
in the area of programming. It is both an opportunity and an expensive 
challenge. With stations able to broadcast on multiple channels, there 
will be a need for a tremendous amount of new, quality public 
broadcasting programming. There are costs involved in the conversion 
which go beyond the significant equipment and hardware needs of 
stations. It will also take additional money to produce programming for 
digital broadcast. All producers will face these new, higher costs. 
Film producers will need to use equipment that is high definition 
quality, and that is an expensive proportion. For producers will need 
to use 35 mm or super 16 film. Producers will need new, and expensive, 
field equipment and cameras in order to shoot in wide screen format. 
Most of the producers with whom we work do have not the finances for 
this new equipment. CPB is currently providing technical assistance and 
training to producers regarding digital conversion. However, 
independent and minority producers also need financial assistance in 
acquiring or accessing the means to produce programming for digital 
broadcast.
    Work of the Minority Consortia.--The Minority Consortia 
organizations work both individually and collaboratively. In the past 
twenty years the Consortia organization have individually provided to 
public broadcasting's schedule hundreds of hours of programming 
addressing the cultural, social and economic issues of the country's 
racial and ethnic communities. Individually, each Consortia 
organization has been engaged in cultivating ongoing relationships with 
the independent producers community by providing technical assistance, 
program funding, programming support and distribution. We also provide 
numerous hours of programming to individual public television and radio 
stations.
    On the collaborative front, the five organizations comprising the 
Minority Consortia are working to jointly write and publish a catalog, 
newspaper ads, Open Calls for Proposals, and a newsletter. Perhaps of 
most potential significance is our joint proposal of a five-part series 
of programs on race relations in America. We sent a solicitation for 
proposals to producers for this project in March. The series would 
consist of one program annually for five years, and would be undertaken 
with substantial input from CPB and PBS. We envision the project to be 
a mutli-layered presentation, i.e. utilizing enhanced broadcast 
applications such as extended interviews and data for Web-TV or 
Internet-linked use. The topic of this series is of national concern 
and we believe it is very important to explore why, for instance, in a 
period of unprecedented and sustained economic prosperity, that 
relations among the different races and cultures in our country are so 
troubled.
    Currently the five consortia groups are in discussion with other 
public broadcast entities to pool and share resources to increase 
awareness of CPB's and Public Broadcasting diversity initiative. Some 
of these collaborations include centralizing program distribution with 
American Public Television (APT), creating minority outreach for 
stations with the Public Television Outreach Alliance (PTOA), and 
working with CPB to formulate a long range strategy for minority 
programming for public broadcasting.
    The Minority Consortia organizations work collaboratively with a 
number of television stations, and hope to increase such working 
relationships.
    Thank you for your consideration of our recommendations. We see new 
opportunities to increase diversity in programming, production, 
audience, and employment in the new media environment, and we as 
minority communities in public broadcasting thank you for your long 
time support of our work on behalf of our communities.
                                 ______
                                 
  Prepared Joint Statement of Jane Watkins (Orlando, FL), President, 
 National Association of Foster Grandparent Program Directors; Dwight 
  Rasmussen (Salt Lake City, UT), President, National Association of 
 Senior Companion Project Directors; and Nan York (Newport News, VA), 
President, National Association of Retired and Senior Volunteer Program 
                               Directors
    We are pleased to testify in support of fiscal year 2000 
appropriations for the Foster Grandparent Program (FGP), Senior 
Companion Program (SCP), and Retired and Senior Volunteer Program 
(RSVP), known collectively as the National Senior Service Corps (NSSC) 
authorized by the Domestic Volunteer Service Act and administered by 
the Corporation for National and Community Service.
    The National Directors Associations are membership-supported 
professional organizations whose rosters include the majority of more 
than 1,200 directors who administer NSSC programs across the nation, as 
well as local sponsoring agencies and others who value and support the 
work of NSSC programs.
    While we the aggregate funding levels set forth in the President's 
fiscal year 2000 budget request for the Senior Corps proposes a modest 
increase in funding for the next fiscal year, we cannot fully support 
that request on several counts. First, the President's budget calls for 
significant increases in other programs of the Corporation for National 
Service, including AmeriCorps. As one of the three ``streams of 
service'' supported by CNS, we feel it imperative to at least secure 
parity in this year's annual appropriations process. In addition, given 
the continuing growth in need for senior volunteers and the fact that 
are programs are nowhere near the capacity of accommodating all of 
those who are qualified and wish to serve, we would be remiss were we 
not to advocate for program expansion during this time of robust 
performance in our economy.
    Accordingly, we request that the Subcommittee on Labor, Health and 
Human Services, Education and Related Agencies appropriate a funding 
level sufficient to both sustain existing programming and promote 
expansion into unserved areas. Specifically, we request that the 
Subcommittee appropriate a funding level of $48.161 million for the 
Retired and Senior Volunteer Program (RSVP), $104.560 million for the 
Foster Grandparent Program, and $43.878 million for the Senior 
Companion Program.
    These funding levels assume the following program components: .An 
increase in the volunteer stipend for Foster Grandparents and Senior 
Companions of $.05 per hour.
  --An administrative cost increase of 3 percent in the Foster 
        Grandparent and Senior Companion Programs and 8 percent in the 
        Retired and Senior Volunteer Program.
  --15 new projects in the Senior Companion Program and 20 new projects 
        in the Foster Grandparent Program.
  --Funding for quality public relations and information dissemination 
        in connection with RSVP's 30th Anniversary.
  --Funding for Programs of National Significance consistent with 
        current law (\1/3\ of any increase in annual funding).
    With regard to any potential funding for demonstration activities 
in fiscal year 2000, the National Association of Retired and Senior 
Volunteer Program Directors and the National Association of Foster 
Grandparent Program Directors request that no funds be allocated for 
demonstration activities. The National Association of Senior Companion 
Project Directors requests funding of $2.050 million for demonstration 
activities involving Senior Companions in order to continue existing 
demonstration activities, but only after the program line item requests 
set forth in the testimony are first fulfilled.
    With the federal budget in balance as we move into the new 
millennium, common sense (and congressional budget rules) dictate that 
we be cost-conscious with our tax dollars--drawing the best return on 
our investments in Federal programs. Since 1965, FGP, SCP, and RSVP 
have represented the best in the Federal partnership with local 
communities, with federal dollars flowing directly to local sponsoring 
agencies, which in turn determine how the funds are used. The evidence 
supports this claim:
  --The Foster Grandparent Program fiscal year 1998 budget of $87.593 
        million was matched with $34.8 million in cash and in-kind 
        donations from states and local communities in which Foster 
        Grandparents volunteer. This represents a non-federal match of 
        nearly 40 percent--well over the 10 percent local match 
        required by law.
  --The Retired and Senior Volunteer Program saw its fiscal year 1997 
        Federal budget of $35.708 million matched with $42 million in 
        contributions by states and local communities, demonstrating 
        broad support for RSVP across the country. This represents a 
        non-federal match of 118 percent--well over the 30 percent 
        required by law. A recent Westat study found that RSVP 
        volunteer raised $11 million in cash and $114 million in in-
        kind resources for their volunteer stations.
  --And, the Senior Companion Program, with a Federal appropriation of 
        $31.244 million in fiscal year 1997, was supplemented by $19.9 
        million in cash and in-kind contributions from states and local 
        communities in which Companions volunteer. This represents a 
        match of 64 percent --far in excess of the 10 percent match 
        required by law.
    Independent Sector recently estimated the per hour value of 
volunteer service to be $13.24 per hour. The 120+ million hours of 
service provided by the nearly 500,000 volunteers serving through RSVP, 
FGP, and SCP is valued at nearly $1.6 billion, a 10-fold return on the 
federal investment of $163.240 million in 1998. Obviously, however, the 
work of our senior volunteers means much more than money. The programs 
are a lifeline to communities and Americans of all ages.
     In 1998, over 27,000 Foster Grandparent volunteers contributed 
23.8 million hours of service through 8,400 local agencies, working 
with children and teenagers who have special needs as well as their 
families. Last year, 96,000 special needs children, teenagers, and 
their families daily were supported by the services of Foster 
Grandparents in all 50 states, the District of Columbia, Puerto Rico, 
and the Virgin Islands. An estimated 189,500 children receive Foster 
Grandparent services annually. Foster Grandparents help young people 
achieve personal independence and self-confidence so that they can 
learn to overcome their problems and become productive members of 
society. The annual federal cost for one Foster Grandparent is less 
than $4.00 per hour.
    RSVP volunteers provided over 74 million hours of service in a 
variety of settings throughout their communities across the country. 
The total cost of fielding one RSVP volunteer is 48 cents per hour of 
service. All told, over 450,000 RSVP volunteers serve annually through 
more than 57,000 public and non-profit local volunteer stations. Sixty-
nine percent of RSVP volunteers are over age 70. Volunteers serve 
through 758 projects sponsored and managed by local non-profit agencies 
in all 50 states, the District of Columbia, Puerto Rico, and the Virgin 
Islands. RSVP volunteers provide services that utilize their own 
talents and interests; they present their communities with a rich array 
of options for addressing the full spectrum of community needs. 
According to a recent study commissioned by the Corporation for 
National Service, more than 35,000 RSVP volunteers provided over 1,8 
million hours of education-related servies to children and youth; 
270,000 RSVP volunteers contributed 9.8 million hours of professional 
or technical support services such as tax preparation assistance or 
retirement planning, and more than 23 million meals were served at 
least in part because of RSVP volunteer service.
    In 1998, 14,200 Federal and non-federally funded Senior Companions 
served over 39,000 older adults through 2,900 volunteer stations daily. 
Senior Companion volunteers contributed over 11 million hours of 
service to their frail older clients--giving assistance to other adults 
with physical, mental, or emotional impairments. SCP volunteers serve 
through 202 programs sponsored and managed by local non-profit agencies 
in all 50 states, the District of Columbia, Puerto Rico, and the Virgin 
Islands. Senior Companions help frail older people achieve and maintain 
the highest possible level of independent living and avoid 
institutionalization. The average annual cost of nursing home care in 
the United States exceeds $30,000. The annual federal cost for one 
Senior Companion is $3,831--less than $4.00 per hour.
    For more than three decades, Federally-supported senior volunteers 
have been touching lives and helping communities in a variety of ways.
    Statistics show that FGP, RSVP and SCP focus their resources where 
they will have the largest impact: FGP on early intervention and 
literacy activities, SCP on in-home assignments with frail older people 
at risk of institutionalization, and RSVP on helping their peers, 
children, and their communities in significant ways. Nationally, 82 
percent of the children served by Foster Grandparents are under the age 
of 12. Recognizing that children's needs are more effectively addressed 
as early in their lives as possible, 50 percent of these children are 
age 5 and under. Foster Grandparents work intensively with these very 
young children to address problems such as developmental delays, 
illnesses, and literacy at as early an age as possible, before they 
enter school. One-third of FGP volunteers serve over 8 million hours 
annually addressing literacy and pre-literacy problems with children 
who have special needs. Sixty-seven percent of FGP volunteers serve in 
public and private schools as well as sites which provide early 
childhood pre-literacy services to very young children, including Head 
Start.
    Twenty-six thousand of the clients served by SCP are 75 or older, 
and 74 percent of SCP volunteers serve in the homes of clients. It is 
the 75+ elder population which most often experiences health problems 
which require institutionalization; SCP prevents institutionalization 
for these people by focusing on providing one-to-one in-home daily 
service and companionship to this population. Thirty percent of SCP 
volunteers provide respite care to families serving as primary care-
givers for an elder loved one. Fifty percent of volunteers address 
chronic care disabilities.
    Over ten percent of RSVP volunteers serve in sites which focus on 
school-age and pre-school age literacy activities, as well as adult 
literacy. Sixty-four percent of RSVP volunteers provide service to 
their fellow seniors through congregate meal programs, food banks and 
kitchens, senior centers, and long term care residential facilities.
    We appreciate the goals of the Subcommittee in exercising its best 
judgment to effect the best use of scarce Federal resources, and as 
American taxpayers, we endorse your efforts to ensure that tax dollars 
yield significant impact. We have much evidence that FGP, SCP, and RSVP 
produce results: numerous and anecdotal stories of lives changed, 
dollars saved, and lasting good works accomplished in communities 
across the country.
    This evidence is compelling, but we believe that much more is 
necessary to show that investing federal dollars in FGP, SCP, and RSVP 
volunteers produces quantifiable, concrete results that significantly 
impact communities in measurable ways. That is why project directors 
nationwide, in cooperation with NSSC staff from the Corporation for 
National Service and with the wholehearted support of the three 
national Directors Associations, have begun to participate in a new 
effort, Programming for Impact (PFI).
    Through PFI, projects and sites where volunteers serve are 
cooperating to collect and report data to support the impact our 
volunteers are having in addressing pressing local community needs. We 
hope that you will agree that the impact data now coming in truly does 
document the incredible effect our volunteers are having on 
communities, and supports your current federal investment in our 
programs as well as our request for increased funds for fiscal year 
2000.
  --RSVP volunteers are making the difference at the Illinois Masonic 
        Medical Center. At present, RSVP volunteers play with children 
        and provide translation assistance in the pediatric unit, help 
        to get emergency supplies and calm those in the waiting room, 
        complete paperwork in the trauma unit, assist with bulk 
        mailings, and provide comfort and support for those in the HIV 
        unit. Jerome Fript, an RSVP volunteer for 9 years, provides 
        cancer tumor registry assistance for the Cancer unit of 
        Illinois Masonic, tracking patients who have been treated for 
        cancer. Mr. Fript volunteers 4 days a week, 5-9 hours a day. As 
        Mr. Fript puts it, ``I'm a workaholic. I cannot stay at home 
        with nothing to do. I've played enough golf. I have to get 
        dressed and get out. It's important for me to know that I'm 
        helping others. Just come down once and volunteer--you'll be 
        sold on volunteering.''
  --After diabetes claimed her leg and confined her to a wheelchair, 
        Florence Styer, 74, of rural Penns Creek, PA, spent her days 
        alone at home, with her telephone as her only link to the 
        outside world. Now, FGP enables Florence--one of 6,000,000 
        Americans over the age of 60 who are living at or below the 
        poverty level--to volunteer four hours everyday with children 
        like Joseph, a young boy with severe learning disabilities 
        caused by fetal alcohol syndrome. Learning is hard for Joseph. 
        When he is particularly discouraged, he and Florence can be 
        found ``walking'' together in the hallway or talking quietly 
        with their arms slung around each other's shoulders. Penns 
        Creek Elementary School officials say that, not only is 
        Florence helping Joseph learn to read, but her example is also 
        teaching Joseph a very important life lesson: although he has a 
        disability, he is first and foremost a person capable of doing 
        whatever he sets his mind to. With Florence as his mentor and 
        guide, he will go anywhere he chooses.
  --Leona Williams is a 64-year-old widow who has been a senior 
        companion in Milwaukee, Wisconsin for two years. Leona is 
        assigned to five clients and the majority of her clients have 
        mental illness. She provides them with an opportunity they 
        would not normally have. She really makes a difference! Other 
        service providers may get chores done, but do not have four 
        hours to spend with clients. She is with her clients, for them, 
        and stands by them. One of Leona's clients has had chronic 
        anxiety disorders all of her life. When she went off her 
        medication, Leona remained with her during the psychotic break 
        and helped transition her into assisted living quarters. 
        Although she now lives out of Leona's geographic boundaries, 
        Leona travels over 30 miles round trip to visit with her. (And 
        there are thousand more like Leona in the Senior Companion 
        Program.)
    As baby boomers age, the ``graying of America'' is progressing at a 
phenomenal rate. Yet, only 5 percent of those over 65 years of age live 
in institutions, and a full 81 percent of the non-institutionalized 65+ 
population has no limitation in their activities of daily living. 
According to a U.S. Administration on Aging/Marriott Senior Living 
Services volunteerism survey, over 41 percent (15.1 million) of the 
37.7 million Americans 60 years of age and older performed some sort of 
volunteer work in the previous year. An additional 37.5 percent (14 
million) indicated they would volunteer if they were asked. The message 
is clear: in spite of the general public's conception of older people 
as frail and dependent, the aging process is, for most people, a time 
of wellness when they have both the time and the desire to serve 
others.
    We need more funds to engage more seniors in meeting the pressing 
needs being expressed by our communities. Your enhanced investment in 
all three senior volunteer programs now will pay off in the short and 
long term--savings realized by the value of service rendered to 
communities across America by senior volunteers; savings realized as 
additional avenues are provided for more older Americans to be involved 
in meaningful service opportunities; and savings realized as that 
involvement keeps older people healthy and independent. Our goal is to 
expand the Foster Grandparent Program, the Senior Companion Program, 
and the Retired and Senior Volunteer Program so that they can provide 
the opportunity for one million Americans to serve by the turn of the 
century.
    Please help us to tap the nation's fastest growing natural 
resource--our seniors, by supporting a fiscal year 2000 funding level 
of $48.161 million for the Retired and Senior Volunteer Program (RSVP), 
$104.560 million for the Foster Grandparent Program, and $43.878 
million for the Senior Companion Program.
                         supplemental comments
Reordering priorities in the President's budget
    For illustrative purposes only, we would also like to take this 
opportunity to share with the Subcommittee our specific views on the 
President's budget, in the event that proposal becomes something of a 
benchmark for the committee's work.
    While we appreciate the support shown by the President's budget for 
the three programs of the National Senior Service Corps, we feel the 
priorities set forth in the President's budget for our programs are not 
entirely appropriate. As we have stated before the Retired and Senior 
Volunteer Program, Senior Companion Program, and the Foster Grandparent 
Program do not presently have the funding necessary to fully satisfy 
the availability of senior volunteers, nor the needs of communities. 
The President's budget requests $5 million for demonstration 
activities, while at the same time proposing negligible increases for 
RSVP, SCP, and FGP. We offer a somewhat different view.
    Assuming the President's proposed aggregate fiscal year 2000 
funding level for the three National Senior Service Corps programs of 
$185.032 million, the National Senior Service Corps Directors 
Associations proposes an alternative distribution of those funds as 
follows--$98.848 million for the Foster Grandparent Program, $46.518 
million for the Retired and Senior Volunteer Program, and $39.666 
million for the Senior Companion Program.
    This funding allocation assumes the following funding priorities:
  --An increase in the volunteer stipend for Foster Grandparents and 
        Senior Companions of $.05 per hour.
  --An administrative cost increase of 3 percent in the Foster 
        Grandparent and Senior Companion Programs and 5 percent in 
        RSVP.
  --$192,000 in funding for new projects in the Senior Companion 
        Program and Foster Grandparent Program.
  --Funding for Programs of National Significance consistent with 
        current law (\1/3\ of any increase in annual funding).
    We believe this funding allocation plan maximizes the number of 
additional volunteers and volunteer service hours which can be 
generated for each federal dollar invested, supports existing programs 
in maintaining their volunteer efforts, and allows for expansion of 
volunteer efforts in areas of highest community need and in areas 
currently unserved by FGP, SCP, and RSVP.
    In the event the Subcommittee supports the President's aggregate 
funding level for the National Senior Service Corps programs, we ask 
that language be included in the committee report accompanying the 
fiscal year 2000 funding measure which supports and specifies the above 
allocation priorities for funds requested for fiscal year 2000 and 
directs the Corporation for National and Community Service to disburse 
funds for fiscal year 2000 in this manner.
                                 ______
                                 
            Prepared Statement of Howard K. Ammerman, Ph.D.
    Once again I am making a plea on behalf of a greater appropriation 
for the still relatively new and unique United States Institute of 
Peace. And again I remind you that the creation of this agency was the 
culmination of about two centuries of efforts in this direction. 
Furthermore, I again remind you that it is in no official capacity that 
I do this. Rather, it is a case of having supported lobbying efforts to 
get the law creating this agency passed in the first place and of 
having followed the progress of this Institute since its inception. So 
when the Institute asks for $13 million for fiscal year 2000 my 
immediate reaction is to say raise this by at least $1 million above 
the requested amount as a token sum if we are really serious about the 
basic idea of having such an agency. After all, this comes at a time 
when the Pentagon is to be given more than it requested.
    Perhaps the President of the Institute would not consider it proper 
to say that the larger figure would in perspective still be ``trivial'' 
but I say it is. My background is in economics but not much economics 
is required to reach such a conclusion. At the risk of sounding 
conceited it is an insult to my intelligence to accept this trivial sum 
as an indication of a serious concern on the part of Congress about 
this approach to the awesome problems of achieving world peace. True 
not many votes are likely to be lost in doing so little to promote such 
an agency. But where is the matter of leadership in a concern that 
history so strongly indicates has been handled by all-too-often 
ineffectual methods in the past? Something drastically different is 
necessary, in my opinion. It is to further considerations of both 
problems and possibilities that I now wish to turn.
    Certainly the technological advances of this ending century have 
been phenomenal. To list them is to be practically certain of 
forgetting some very significant ones. But, to name a few there is the 
Salk vaccine, antibiotics, organ transplants, joint replacements and 
other wonders of medicine and surgery. The automobile and radio were in 
their infancy at the beginning of this century and the airplane was not 
yet invented. Then there are television and the computer as examples. 
Furthermore, the accumulation of knowledge in general has accelerated 
in recent decades. Certainly these developments have brought great 
benefits to human kind.
    At the same time this century has been characterized as the ``worst 
ever''. How have we arrived at this disappointing and shocking 
conclusion? First, one measure of this sad state is the 110 million 
wartime casualties, including approximately 2 million children killed 
in the last fifteen years or so. And this wartime toll is the smaller 
of two figures arrived at for this century. So on an overall basis, in 
the midst of such great ``progress'' there has been a glaring 
misdirection in the allocation of attention and resources.
    As Basil O'Connor has put it, ``How long can we wage war like 
physical giants and seek peace like intellectual pygmies?'' There has 
been an undue fascination with technology which doesn't wait for social 
behavior to adjust. And there seems to be more than adequate experience 
to show that some new mechanical weapon of war or possibly prevention 
of war will inherently lack the capacity to insure our survival. After 
all this experience with such weapons covers centuries with great 
technological changes in the nature of such devices. Rather, with the 
development of nuclear weapons human kind now has the capacity and the 
actual weapons to eliminate ourselves from the face of the earth But 
isn't it logical that lasting peace can come only through changes in 
human behavior? And despite the efforts over the years of many 
dedicated workers in research and other areas, can we be said to have 
waged an effort to achieve peace at all comparable in intensity to that 
required to develop the atomic bomb, for example? Yet four of the 
leading scientists in the creation of that bomb felt constrained to 
point out some very serious implications of its existence so far as 
human behavior is concerned.
    These four physicists wrote a letter to the Secretary of War Henry 
L. Stimson on August 17, 1945 in response to his request for some 
technical information regarding this new and radically different 
weapon, the atomic bomb (which was dropped on Hiroshima and Nagasaki, 
Japan on August 6 and August 9, 1945, respectively) The technical 
questions dealt with by these physicists need not concern us here but 
rather our attention to related matters which they felt obligated to 
address. First, they pointed out that nuclear weapons far more 
effective both technically and quantitatively would be developed in the 
future. These predictions have been markedly fulfilled. Furthermore, 
they could not foresee development of military countermeasures which 
would be adequately effective in preventing delivery of nuclear 
weapons. Nor could they outline a program that would insure hegemony to 
the United States in coming decades in the field of nuclear weapons. 
Even if such hegemony were achieved, they could not foresee its 
protecting us from ``terrible destruction''.
    The scientists went on to say: ``We believe that the safety of this 
nation--as opposed to its ability to inflict damage on an enemy power--
cannot be wholly or even primarily in its scientific or technical 
prowess. It can be based only on making future wars impossible. It is 
our unanimous and urgent recommendation to you that, despite the 
present incomplete exploitation of technical possibilities in the 
field, all steps be taken, all necessary arrangements be made to this 
one end. . . .'' It seems to me that little comfort can be taken in how 
we as a nation have responded in the past 54 years to this urgent 
recommendation of these physicists. Can we now do less than make 
intensive and comprehensive efforts to make up for lost time?
    Initially the recommendation of the commission to consider the 
matter of a governmental peace agency at the national level was to 
create a ``National Peace Academy'' as a kind of companion organization 
of the military academies and there were military professionals who 
supported the idea. It seems to me that the emergence of a ``United 
States Institute of Peace `` really represented a downgrading of the 
original idea. Somehow the idea of ``another campus'' by some 
legislators was considered as going too far. Now it seems to me that 
the Institute is being pushed in this direction by demands for its 
educational programs in conflict resolution and peacekeeping as 
examples. Why should it not be in order to consider an appropriation 
equivalent to at least one of the military academies? And can a budget 
of around $13 million be considered suitable to an organization that is 
to have its own building?
    In 1955 a book was published entitled ``Towards a Science of 
Peace'', written by psychologist Theodore Lentz. Lentz was a writer of 
scientific reports on attitude measurement and research. A long-time 
member of the faculty of Washington University he was founder and 
Director of the Character Research Association and the Peace Research 
Laboratory in St. Louis, Missouri. In this book Lentz makes a carefully 
reasoned plea for the application of the scientific method to this most 
urgent problem of achieving peace in international relations. In 1972 
Lentz followed with a second book, ``Towards a Technology of Peace'' 
with the objective being to encourage the development of a 
technological attitude toward the all-important problem of achieving 
peace. While observing that the science of peace had moved at ``less 
than an optimum pace'' he considered it was still ahead of peace 
technology.
    The idea of a space missile defense program, more often termed 
``star wars'', was first broached by President Reagan in 1983. The 
reaction of Isaac Asimov, a writer of science fiction and valid science 
for 49 years, was to fear that perhaps President Reagan didn't know 
where the line was between the two. Asimov wouldn't say it couldn't be 
done but said if it were done it would take perhaps 50 years according 
to most people with the experience to comment on it. But now, many 
billions of dollars later, we are still pursuing this perhaps will-o'-
the-wisp objective which if achieved would, according to what I can 
learn, provide a deceptive degree of protection while sending a wrong 
signal to Russia at the same time. In any case to me it would make more 
sense, although requiring considerable selling of the idea to the 
public, to spend perhaps billions pursuing the ideas of Theodore Lentz. 
To reject the Lentz ideas summarily is in my opinion to downgrade the 
potential capacities of our collective mentalities. And in no sense and 
getting back to the matter of economics can I consider it irresponsible 
to spend billions for what are obviously unconventional ways of 
proceeding in approaching this problem with which mankind has struggled 
for centuries.
    To me this is a case of rising to perhaps the greatest challenge 
that mankind can envision. The matters of poverty, health, and 
environment are inextricably interwoven with the achievement of world 
peace. The United States Institute of Peace has provided an avenue of 
hope in its observation, ``We are not looking for a revolution in human 
nature; we are looking for an evolution in human institutions''.
                                 ______
                                 
     Prepared Statement of Carol C. Henderson, Executive Director, 
            Washington Office, American Library Association
    On behalf of the American Library Association, I am submitting this 
testimony for the hearing record on fiscal year 2000 appropriations for 
library programs. Founded in 1976, ALA is a nonprofit educational 
organization of 57,000 librarians in public, school, state, academic 
and specialized libraries, as well as library supporters, trustees and 
friends of libraries throughout the country. ALA is dedicated to public 
access to information and to the improvement of library services for 
the American people.
                                  lsta
    ALA appreciates the support this Subcommittee has provided for 
libraries and federal library programs, especially your support of the 
Library Services and Technology Act state grant program, library 
services to Native Americans, and funding for the national leadership 
grant program.
    We request your support for fiscal year 2000 funding of $166.2 
million for library programs authorized under the Library Services and 
Technology Act and administered by the Institute of Museum and Library 
Services.
                             iasa title vi
    In addition, we ask that you fund the Improving America's Schools 
Act Title VI block grant at least at the level agreed upon by the House 
last year of $400 million. We have appreciated the subcommittee's 
funding commitment to Title VI, particularly since it is the only 
funding possibility for school libraries.

----------------------------------------------------------------------------------------------------------------
                                                                    Fiscal years--
                                                        --------------------------------------        ALA
                                                                1999           2000 request      recommendation
----------------------------------------------------------------------------------------------------------------
LSTA...................................................       $166,175,000       $154,500,000       $166,175,000
IASA VI................................................        375,000,000  .................        400,000,000
----------------------------------------------------------------------------------------------------------------

                institute of museum and library services
    ALA believes that congressional action in 1996 to locate the 
Library Services and Technology Act in the Institute of Museum and 
Library Services was a wise step. The partnership of libraries and 
museums has been a productive one. While there are differences between 
these two types of institutions, the synergy at the federal level has 
been productive in areas that were expected (such as the use of digital 
technologies to promote greater public accessibility to both library 
and museum collections) and in unexpected ways (such as illuminating 
the myriad ways in which museums and libraries were already cooperating 
at the local level).
    The recently resigned Director of IMLS, Diane Frankel, certainly 
set a high standard for wise leadership and strong professional 
credentials. She welcomed librarians, was eager to learn about 
libraries, and made herself available to and accessible to the library 
community. Moving a program from one agency to another is never easy, 
but she made a major transition a fairly smooth process. We are 
confident that IMLS will continue to administer LSTA responsibly and 
with a very efficient use of federal dollars.
                          impact of libraries
    Libraries themselves are also very efficient users of federal 
dollars. We request funding of LSTA at the total for fiscal year 1999 
so they can further demonstrate how efficient they are. No public 
institution purveys a modest amount of federal stimulus to greater 
public benefit than libraries. They leverage those funds to attract 
other dollars, to demonstrate new and innovative methods of providing 
service that later find local support, and to bring new users into the 
library for learning, literacy, and the information needed for more 
productive daily living.
    However, the specific benefits from library use may show up only 
years later: the preschooler whose family library visits make her more 
ready for reading and learning in school; the parent who sought health 
information at the library regarding a child's medical condition; the 
citizen who used federal government information to comment to an agency 
about pending regulations; the struggling student who spent hours at 
the library computers and went on to a well-paid technical job; the 
laid-off worker who honed resume skills and found job opportunities 
through library databases; the entrepreneur like Mayor Phil Bredesen 
who upon moving to Nashville, Tennessee started a new business based on 
library research and used the library as his ``roving business 
office.''
    No one forces people to use libraries, no one checks why the 
information they seek is needed, and there is no test to enter or 
leave. That's the beauty of libraries in a democratic society, but the 
voluntary nature of use, the cumulative impact of information use over 
time, and the expectation of user privacy also complicate our ability 
to assess the impact of libraries.
    There are non-intrusive ways for us to begin asking questions such 
as how library customers use electronic access and how it benefits 
them, and some early research efforts are under way to measure the 
impact of technology. ALA's Office for Information Technology Policy is 
beginning to open discussions with researchers and potential funders to 
explore ways in which we can get some partial but informative answers 
to these difficult assessment questions. IMLS and state library 
agencies are also working on performance indicators for LSTA.
                        importance of technology
    A 1998 study sponsored by the ALA Office for Information Technology 
Policy and the U.S. National Commission on Libraries and Information 
Science showed that 73 percent of public library buildings have some 
Internet access, thanks partly to LSTA. However, effective public 
access is far from complete. Nearly half of these libraries have only 
one multimedia workstation available to the public, and only one third 
of these libraries are connecting at speeds greater than 56 kbps. The 
situation will continue to improve with the e-rate telecommunications 
discounts. Federal support also helps with the rest of the continuing 
investment libraries must make in computer hardware and software, 
electronic content, and training for staff and the public.
    Technology has enabled new forms of library outreach to under-
served communities such as the cybermobile equipped with traveling 
technology that has taken to the road in East St. Louis, or the 
cybermobile in Muncie, Indiana, which travels to senior centers and day 
care centers and provides equipped space for classes on new technology. 
As libraries make progress in providing public workstations and 
training opportunities to the public, more information on specific 
subjects like health becomes available to a wider public. For example, 
from July through November of 1998, Illinois libraries conducted 2.1 
million searches of electronic databases, compared to 1.1 million 
during the same months the previous year. See the attachment for 
examples of the increased availability of electronic materials through 
state-wide library systems.
           national digital library for education initiative
    ALA is pleased to see that the budget request for LSTA includes $5 
million toward an interagency initiative for digital library materials 
for educational purposes. This is a large task and a small amount of 
money. But it could be leveraged to useful effect in a number of ways. 
Some funds could be used to provide a dependable central registry 
leading librarians and users to the numerous digitization projects 
already underway (some of them very useful but specialized or not well 
known). Some funds could support research to help libraries, museums, 
and archives meld their different ways of describing collections into 
seamless access for the user.
    Some funds could be used to digitize primary source history 
material not easily available to students; ``virtual'': versions would 
enhance student study of the history of their state. History comes 
alive through the use of photos, original letters, diaries, local oral 
and written histories, and other materials, as the Library of 
Congress's American Memory digitization project has shown. Many more 
such treasures reside in local libraries.
                         reading excellence act
    We ask your support of the Administration's request of $286 million 
for the Reading Excellence Act. Libraries, both public and school, are 
the other part of the reading equation, providing access to materials 
for reading practice and enjoyment and librarians who teach information 
retrieval skills, and are included as partners in the legislation. The 
National Reading Panel ``Progress Report'' of February 22, 1999, cites 
research that ``children also need the opportunity to surround 
themselves with many types of books.''
                             other programs
    ALA also urges support of adult education and adult literacy 
programs, and appreciates the strong support of the Administration and 
Congress for elementary and secondary and higher education programs, as 
well as educational research and statistics (including the National 
Library of Education and the 21st Century Community Learning Centers). 
In addition, we support the request of $1.3 million for the U.S. 
National Commission on Libraries and Information Science.
    Thank you for the opportunity to provide information about federal 
library programs.
selected examples of lsta funded projects under the state grant program
    Alaska.--The Tuzzy Consortium Library is combined Academic/Public 
library located in Barrow Alaska. It also provides administrative 
oversight to seven Community/School libraries in the villages Anatuvuk 
Pass, Atqasuk, Kaktovik, Nuiqsut, Pt. Hope, Pt. Lay and Wainwright. The 
goal of this LSTA project was to have all seven of the village library 
technicians meet in Barrow for the weekend and to train them in the use 
of library resources and effective library management. Participants 
were introduced to library automation, the Internet, online database 
searching, and children's programming. Full training sessions were 
conducted on Friday, Saturday and Sunday.
    The objectives were to get better acquainted with village library 
technicians (VLT), introduce them to Tuzzy Consortium Library's 
policies and resources, provide them with the basic reference answering 
techniques and procedures, and train them in the effective use of 
online resources. As measured by the evaluations of the participants, 
all four of the objectives were met.
    Another LSTA project was directed toward improving statewide access 
to the materials in the Alaska Resources Library and Information 
Services (ARLIS) by adding them to the Anchorage Municipal Libraries 
DRA catalog and circulation system. ARLIS is a consortium of seven 
state and federal natural resources libraries that formed in fiscal 
year 1997 as a federal ``reinvention project''. The seven libraries 
physically merged collections and staff. Participation in this project 
allowed them to integrate the catalog and circulation functions.
    Anchorage Municipal Libraries (AML) was interested in sharing its 
technology infrastructure in cost sharing situations which provided 
favorable pricing for institutional aggregates through formal written 
agreements. The Alaska Resources Library and Information Services 
needed an online public catalog/circulation system and was interested 
in sharing the Anchorage DRA system. As a result of the project, 
library users statewide have benefited through improved access to 
resources. Within a keystroke, an ARLIS, AML, or Internet user can see 
if a book from either institution is checked out or on the shelf.
    Arizona.--A $365,000 LSTA project of the Arkansas State Library 
provides more than 600 public, school, special, and academic libraries 
with reference, index, and full text articles from thousands of 
publications via electronic databases. Nursing students find the Health 
Reference Center database extremely useful, especially those enrolled 
in new radiology programs. A librarian reported that the students were 
excited about the new information access: ``the full text is a major 
improvement for us, it provides so many titles that we don't otherwise 
have.''
    California.--Current LSTA-supported projects include: ``Newsline 
San Diego'' is a telephone-based service that reads local daily 
newspapers to people with visual and physical disabilities throughout 
the area, coordinated by San Diego County Library. Carlsbad Public 
Library is becoming an Info People site (``Internet For People''), a 
program providing training, community partnerships, and equipment to 
establish Internet stations for public use. In nearby National City 
Public Library, an LSTA-supported community computer center offers 38 
hours each week of service for people to take basic computer classes, 
do word processing and explore the Internet. Three San Francisco Public 
Library branches have become Info People sites (``Internet For 
People''). In the nearby Holocaust Center for Northern California 
library catalog records are being converted to electronic format so 
that people throughout the nation can learn about the existence of the 
collection and borrow materials from it.
    Hawaii.--The Hawaii State Public Library System (HSPLS) provides 
library resources to all residents, rural or urban, through a variety 
of means of public libraries, bookmobiles, and Dial-In Access. Hawaii's 
distance from mainland United States presents special challenges in 
accessing information, but by increasing the use of technology and the 
availability of electronic information, many of these challenges can be 
met. Currently, using federal LSTA funds, HSPLS is working to upgrade 
and enhance electronic access to library materials in many different 
ways: (1) Upgrading the computer systems available in the state's 
public libraries to enable access to the Internet and the many online 
resources provided by the library system--an online catalog, magazine 
and newspaper index, and reference databases; (2) Expanding access to 
these online resources by providing free Internet access to all state 
residents simply by dialing into their local public library. This means 
that Hawaiians can access this information from their schools, 
businesses, and homes; (3) Installing large-type computer terminals for 
the Library for the Blind and Physically Handicapped, thereby extending 
access to service for Hawaii's special populations and integrating them 
into the mainstream of library services and user groups.
    Iowa.--State Library of Iowa uses LSTA to support SILO (State of 
Iowa Libraries Online) and information databases such as FirstSearch. 
Because of SILO: students are coming to the public library after school 
and using SILO. ``I even got a thank you note from a student!'' one 
librarian noted, which is ``very rare!''. Rural libraries that formerly 
were not able to afford to provide online reference sources are now, 
through SILO, able to provide everything a ``big city library'' can. 
``It makes me feel great to know that we can give our customers what 
they need''.
    One librarian said ``it feels good to provide accurate information. 
. . . Sam came in to do a paper and said ``I hate C's' He wanted lots 
of information to get an A''. Because the little library could provide 
FirstSearch, he was well on his way to an A.
    ``Lots of nontraditional students are using SILO services'' reports 
another librarian. In one school library, the librarian reported that a 
teacher no longer buses students to a bigger library since the school 
has access to SILO. ``It's nice that the kids can go around the world 
now'' in the library.
    Home schooling families are active users of SILO, accessing it at 
their local public libraries. One patron recommended the local 
librarian ``for sainthood'' after getting needed medical information 
from SILO.
    Another patron needed to ``locate family members they hadn't talked 
to in 20 years because the stepfather was dying. We found some of the 
family members'' reports the librarian, using the computer and SILO.
    A Rockwell librarian said: ``SILO makes a big difference to our 
library patrons in general. We could never afford or have room for all 
the books that patrons need. One story I would like to share is about a 
disabled person who likes to read books on a variety of subjects. We 
have been able to get this person just about every book that she wants 
by using SILO. She doesn't have to try to get to another library to get 
the books. I am so glad we can offer this service''.
    In other LSTA projects homework centers at Public Library of Des 
Moines were created as demonstration project with LSTA funds and 80,000 
Iowa kids took part in the summer reading program ``Rock and Read'', 
sponsored through LSTA.
    Mississippi.--The Read for Light project makes any printed material 
which may be scanned accessible to sight-restricted students and adults 
in one Tate County School and one Senatobia Public Library facility. 
Some school children cannot see large-print editions of texts. Many of 
the 20 percent of county adults age 65+ need size-enhanced reading 
materials. The $3,000 LSTA grant will provide 27'' TV screens, 
scanners, and computer adapters. Text may be read in type as large as 
two inches.
    Nevada.--The Library Services and Technology Act in Nevada has 
funded several exciting projects that are furthering information 
services within the state. Unique Nevada visual resources are being 
preserved, organized and disseminated in the Nevada State Archives 
Photograph CD Project. Over 6,000 historic photographs from the State 
Archives have been scanned and are now being cataloged and loaded into 
a database. The end products will be an online database accessible via 
the Internet and a library of compact disks that will be distributed to 
the public and academic libraries within the state. Another exciting 
wave of projects has focused on enhancing services to sight-impaired 
library patrons. Five public libraries are improving access to 
electronic information resources by creating information workstations 
that meet ADA specifications. These public workstations host special 
software and hardware that will assist special needs patrons in their 
information.
    Pennsylvania.--The James V. Brown Library in Lycoming County has 
used LSTA funds to install an information kiosk at the Lycoming Mall at 
the opposite end of the county from the library. The information kiosk 
connects the patrons at the mall to all of the information resources of 
the James V. Brown Library including information on education, 
employment opportunities, government agencies and consumer health. 
Linda Schramm, coordinator of the Susquehanna Health System's Life 
office at the mall, says, ``We now refer out patients to the kiosk for 
information on health and wellness. They can find and print articles 
written from the patient's perspective and take them home.''
    In Erie, an LSTA funded outreach service of the Erie County Public 
Library led to the smile on the face of a Bosnian immigrant at a 
learning center. This middle-aged student of English as a Second 
Language had witnessed the death of most of his family. Since his 
arrival in Erie, it had been nearly impossible to elicit a smile from 
him. One day at the center, while reading a book supplied by the 
library, he smiled on his own volition, pleased with his progress in 
learning to read English.
    In Philadelphia, people who are unemployed find work via LSTA 
funded career information materials and software applications at the 
Free Library of Philadelphia. One client, an unemployed single mother 
of two, used this workplace center to locate prospective employers and 
to help her with a resume cover letter. This led her to a position in a 
children's hospital as an administrative secretary.
    South Carolina.--The South Carolina State Library used a 
significant part of first year funding under the Library Services and 
Technology Act to initiate a statewide database access project. 
DISCUS--South Carolina's Virtual Library-provides all South Carolinians 
with access to an electronic library of essential information 
resources. These resources are available to every citizen of the state, 
ensuring equity of access regardless of where people live. The first 
year DISCUS was available through the Internet to all public libraries 
and libraries in all institutions of higher education. Three K-12 
school districts were also connected. The success of this first year's 
activities led to the General Assembly appropriating $1.5 million to 
continue DISCUS and to add all K-12 schools. LSTA funds will now be 
available to enable public libraries to offer remote access to DISCUS 
databases.
    Texas.--LSTA funds are used to provide public libraries with access 
without charge to electronic information through the Texas State 
Electronic Library, a project of the Texas State Library. The 
electronic resources that are offered without charge to the public 
libraries in the state are expensive to purchase and to use, and again, 
the majority of public libraries in Texas do not have the funds to 
purchase these resources locally. They depend on the Texas State 
Electronic Library for access to, the Encyclopedia Britannica, Electric 
Library, the First Search databases, and to both state and federal 
government resources available through the Internet. Without LSTA 
funding, the Texas State Electric Library could not afford the price of 
the information it provides without charge to public libraries and 
their patrons statewide.
    Wisconsin.--Wisconsin Valley Library Service will provide a central 
site direct Internet connection for 25 member public libraries. This 
connection will allow the libraries to have a high-speed Internet 
connection by taking advantage of a state-funded program, TEACH 
Wisconsin, that makes TI lines available to public libraries at a 
reduced cost. The LSTA funds will be used for a router at the central 
site and software to operate the site. This same network also will 
provide telecommunications access to libraries participating in a 
systemwide shared automation system and will allow more libraries to 
join. LSTA funds have been instrumental in providing the seed money to 
implement and enhance library projects, such as this, that otherwise 
would not have been possible.
    With a $9,975 LSTA grant, the Spooner Memorial Library, in 
cooperation with five Headstart and childcare centers, is promoting 
early literacy skills for disadvantaged preschoolers in childcare 
centers that lack adequate library resources and are unable to 
transport young students to the public library. The library is 
establishing rotating collections of children's literature in the 
childcare centers and working with the staffs of the centers to ensure 
maximum use and benefit to the children involved.
    Washington.--LSTA funds in Washington State have enabled the state 
library to award five waves of grants for Internet connectivity in many 
libraries. After an evaluation and standardization, basic work stations 
have been installed, software and hardware and training have been 
provided, as well as follow-up technical assistance. The first wave of 
grants went to public libraries and the second to some school and 
tribal libraries. Eighty-seven libraries have received the assistance 
with another 9-12 coming on-line soon. These grants have leveraged 
local and private contributions as well as a cooperative spirit and 
local interest in using the library resources.
                                 ______
                                 
     Prepared Statement Carol Pierson, President and CEO, National 
                  Federation of Community Broadcasters
    The National Federation of Community Broadcasters (NFCB) submits 
this statement regarding the fiscal year 2002 appropriation for the 
Corporation for Public Broadcasting. NFCB is the sole national 
organization representing 150 community radio stations which provide 
service in the smallest communities of this country as well as the 
largest metropolitan areas. Nearly half of our members are rural 
stations and half are minority controlled stations.
    In summary, the points we wish to make to this Subcommittee are 
that NFCB:
  --Supports the CPB request of $350 million for fiscal year 2002
  --Requests the Subcommittee to ensure that CPB utilizes digital funds 
        it receives for radio as well as television needs.
  --Requests the Subcommittee to ensure that funds for digital 
        conversion be in addition to the PTFP funds that support the 
        on-going needs of public radio and television.
    Additionally, NFCB:
  --Supports the recent change made by CPB in the formula for 
        distribution of funds for radio stations.
  --Supports CPB activities in facilitating programming services to 
        Latino and Native American radio stations.
    Community radio fully supports $350 million for the Corporation for 
Public Broadcasting in fiscal year 2002.--Federal support distributed 
through the CPB is an essential resource for rural stations and for 
those stations serving minority communities. These stations provide 
critical, life-saving information to their listeners. Yet they are 
often in communities with very small populations and limited economic 
bases so that the ability of the community to financially support the 
station is insufficient without federal funds.
    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 is dominated by national 
program services and concentrated ownership of the media.
    We are very pleased with changes CPB is implementing in the way 
grants are made to stations. CPB's new policy targets rural radio for 
significant increases in funding beginning in fiscal year 2000. This 
recognizes the critical service these stations provide with limited 
local resources. Funds will also be made available to help extend 
public radio to places where it is currently not available, and to help 
stations work together in new and innovative ways. NFCB was privileged 
to be a part of the consultation process which was very inclusive and 
constructive.
    The following House and Senate Appropriations Committee Report 
language regarding radio was very much appreciated:
    ``The Committee urges the CPB in allocating reduced funding to 
consider the impact of that reduced allocation on rural radio and TV 
stations, particularly those which are sole service providers, having 
minimal donor bases, and serve areas with limited cable alternatives.'' 
(H. Rpt. 104-209)
    ``The Committee intends that CPB foster services for unserved or 
underserved audiences focusing on entities whose primary services are 
directed at audiences in rural areas and native American audiences. The 
committee is concerned about the erosion of grants for radio stations 
serving these communities.'' (S. Rpt. 105-58)
    We commend CPB for the leadership it has shown in supporting and 
fostering the programming services to Latino stations and to Native 
American stations. Satelite Radio Bilingue provides 24 hours of 
programming to stations across the United States and Puerto Rico 
addressing issues of particular interest to the Latino population. In 
the same way, American Indian Radio on Satellite (AIROS) is 
distributing programming for the Native American stations, arguably the 
fastest growing group of stations. There are now over 30 stations 
controlled by and serving Native Americans, primarily on Indian 
reservations.
    CPB plays a very important role for the public and community radio 
system. They are the convener of discussions on critical issues facing 
us as a system. They support research so that we have a better 
understanding of how we are serving listeners. The Future Fund has 
provided support for projects that help the system work more 
efficiently and effectively. Projects have improved fund raising 
practices, helped groups of stations combine financial functions or 
underwriting solicitations, and explored ways to use new technologies 
to improve the programming services that stations are providing.
    NFCB thanks the subcommittee for your support of the supplemental 
appropriation to replace the public radio satellite capacity.--As you 
know, the timeline for this replacement was suddenly moved up when the 
Galaxy IV satellite spun out of control. The Public Radio Satellite 
System is a critical link for community and public radio stations to 
distribute important national and regional programming. The Satelite 
and AIROS services use this satellite as do many independent radio 
producers and the major public radio networks. It is important that $48 
million in funding is committed now so that a new agreement can be 
negotiated by this summer. We support the request for $30.6 million 
that has been approved by the House with an additional advance funding 
for fiscal year 2000 of $17.4 million.
    Finally, community radio supports funding for conversion to digital 
broadcasting by public radio and television.--While public television's 
needs are more immediate, we expect that there will be funds available 
for radio when a standard for digital radio broadcasting is adopted. 
However, the television conversion process is already having an impact 
on public radio stations. As television stations increase the space 
they need on their towers for two antennas instead of just one, radio 
stations who rent space on TV towers are losing their leases and being 
forced to move to other towers--sometimes with very short notice. And 
the space on other towers is also limited because of the expanded needs 
of television stations. This situation will only get worse over the 
next four years as we approach the FCC deadline for television 
conversion. We would like to see emergency funding to help public radio 
stations who lose their tower space do the necessary engineering 
studies and move to new tower locations.
    The Administration's proposal of $450 million for digital 
conversion assumes that all of the funding to the Public 
Telecommunications Facilities Program (PTFP) in the Department of 
Commerce will be for digital conversion. This would mean no funding for 
the current activities of PTFP. In fact, PTFP needs to continue to 
cover public radio's needs along with the analog needs of television 
and distance learning projects. We are concerned that the level of 
funding in the Administration's proposal will not be sufficient to 
cover the on-going needs of the system and the cost of converting both 
public television and public radio. We are also concerned that 
independent producers' conversion needs be addressed in some way so 
that this important source of programming is not locked out of the 
system.
    We appreciate Congress' direction last year to CPB that it utilize 
its digital conversion fund for both radio and television and ask that 
you ensure that the funds are used for both media. Congress stated, 
with regard to the fiscal year 2001 digital conversion funds:
    ``The required (digital) conversion will impose enormous costs on 
both individual stations and the public broadcasting system as a whole. 
Because television and radio infrastructures are closely linked, the 
conversion of television to digital will create immediate costs not 
only for television, but also for public radio stations (emphasis 
added). Therefore, the Committee has included $15,000,000 to assist 
radio stations and television stations in the conversion to 
digitalization . . .'' (S. Rpt. 105-300)
    This is a period of tremendous change. Digital is transforming the 
way we do things; new distribution avenues like digital satellite 
broadcasting and the Internet are changing how we define the business 
we are in; the concentration of ownership in commercial radio makes 
public radio and particularly community radio, more unique and more 
important as a local voice than we have ever been. During this time, 
the role of CPB as a convener of the system becomes even more 
important. And the funding that it provides will allow the smaller 
stations to participate along with the larger stations who have more 
resources, as we move into a new era of communications.
    Thank you very much for the support you have provided to public 
broadcasting in the past and for your consideration of our 
recommendations regarding community radio.
    The NFCB is a twenty four 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 87 Participant members and 
103 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: 41 percent of the 
members serve rural communities and 46 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 have been 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 under 10 percent of 
the larger stations' budgets, but can represent up to 50 percent of the 
budget of the smallest rural stations.
                                 ______
                                 
Prepared Statement of Jane H. Watkins, President, National Association 
                of Foster Grandparent Program Directors
    The National Association of Foster Grandparent Program Directors 
(NAFGPD) is pleased to submit testimony in support of fiscal year 2000 
funding for the Foster Grandparent Program (FGP), the oldest and best-
known of the three programs known collectively as the National Senior 
Volunteer Corps, which are authorized by Title II of the Domestic 
Volunteer Service Act of 1973, as amended (DVSA) and administered by 
the Corporation for National and Community Service.
    NAFGPD is a membership-supported professional organization whose 
roster includes the majority of more than 350 directors who administer 
Foster Grandparent Programs nationwide, as well as local sponsoring 
agencies and others who value and support the work of FGP.
                            fgp: an overview
    Established in 1965, the Foster Grandparent Program was the first 
federally funded, organized program to engage older volunteers in 
significant service to others. From the 20 original programs based 
totally in institutions for children with severe mental and physical 
disabilities, FGP now comprises nearly 350 programs in every state and 
the District of Columbia, Puerto Rico, and the Virgin Islands. All of 
these programs are now primarily based in community volunteer sites--
where most special needs children can be found today--and are 
administered locally through a non-profit organization or agency and an 
Advisory Council comprised of community citizens dedicated to FGP and 
its mission. FGP represents the best in the federal partnership with 
local communities, with federal dollars flowing directly to local 
sponsoring agencies, which in turn determine how the funds are used. 
There are currently 27,300 Foster Grandparent volunteers who give over 
24.6 million hours annually to a total of 189,500 children.
    The Foster Grandparent Program is unique for several reasons. We 
are one of only two volunteer programs in existence that enable seniors 
living on very limited incomes to serve their communities as volunteers 
by providing a small non-taxable stipend and other support which allow 
volunteers to serve at little or no cost to themselves. Our volunteers 
provide intensive, consistent service--20 hours every week, usually 
four hours every day. FGP provides intensive pre-service orientation 
and at least 48 hours of on-going training every year to keep 
volunteers current and informed on how to work with children who have 
special needs. And our volunteers provide one-to-one service to their 
assigned children, exactly what is required to help prepare our 
nation's neediest children to become self-sufficient adults.
                          fgp: the volunteers
    The Foster Grandparent Program is a versatile, dynamic, and 
uniquely multi-purpose program. First, we give older Americans who are 
60 years of age or older, who are living on incomes less than 125 
percent of the poverty level, and who have time to give the opportunity 
to volunteer 20 hours every week and use the talents, skills and wisdom 
they have accumulated over a lifetime to give back to the communities 
which nurtured them throughout their lives. Seniors in general are not 
valued or respected in today's society, and low-income seniors are 
particularly devalued because of their economic status. They are rarely 
asked by their communities to contribute through volunteering, because 
they are not traditionally those who participate in community 
activities. Yet a 1998 Independent Sector report found that seniors in 
general were approximately four times more likely to volunteer if they 
were asked.
    FGP actively seeks out these low-income seniors. We dare to ask 
them to serve, to give something back. And we help them to develop the 
additional skills they may need to function effectively in settings 
unfamiliar to them, like public schools, hospitals, child care centers, 
and juvenile detention facilities. We also provide them with on-going 
training and support throughout their tenure as Foster Grandparents. 
Through their service, our older volunteers say they feel and stay 
healthier, that they feel needed and productive. Most importantly, they 
leave to the next generation a legacy of skills, perspective and 
knowledge which have been learned the hard way--through experience.
    Within budgetary constraints, FGP is doing a good job of engaging 
older people who are not usually asked to serve and those usually 
thought of as needing services rather than being able to serve: 69 
percent of FGP volunteers are age 70 and older, 53 percent come from 
various ethnic groups, nearly 40 percent have disabilities, and 45 
percent live and serve in rural areas.
  --After diabetes claimed her leg and confined her to a wheelchair, 
        Florence Styer, 74, of rural Penns Creek, PA, spent her days 
        alone at home, with her telephone as her only link to the 
        outside world. Now, FGP enables Florence--one of 6,000,000 
        Americans over the age of 60 who are living at or below the 
        poverty level--to volunteer four hours everyday with children 
        like Joseph, a young boy with severe learning disabilities 
        caused by fetal alcohol syndrome. Learning is hard for Joseph. 
        When he is particularly discouraged, he and Florence can be 
        found ``walking'' together in the hallway or talking quietly 
        with their arms slung around each other's shoulders. Penns 
        Creek Elementary School officials say that, not only is 
        Florence helping Joseph learn to read, but her example is also 
        teaching Joseph a very important life lesson: although he has a 
        disability, he is first and foremost a person capable of doing 
        whatever he sets his mind to. With Florence as his mentor and 
        guide, he will go anywhere he chooses.
                           fgp: the children
    Second, through our volunteers, the Foster Grandparent Program also 
provides person to person service to children and youth under the age 
of 21 who have special or exceptional needs, many of whom face 
serious--often life-threatening--challenges. With the changing dynamics 
in family life today, many children with disabilities and special needs 
lack a consistent, stable adult role model in their lives. The Foster 
Grandparent is very often the only person in a child's life who is 
there every day, who accepts the child, encourages him no matter how 
many mistakes the child makes, and focuses on the child's successes.
    Special needs of children served by Foster Grandparents include 
AIDS or addiction to crack or other drugs; abuse or neglect; physical, 
mental, or learning disabilities; speech, or other sensory 
disabilities; incarceration; terminal illness; teen parenthood. Of the 
children served, 12 percent are abused or neglected, 22 percent have 
learning disabilities, and 11 percent have developmental delays. FGP 
focuses its resources in areas where they will have the most impact: 
early intervention services and literacy activities. Nationally, 82 
percent of the children served by Foster Grandparents are under the age 
of 12, with 50 percent of these children age 5 or under. Foster 
Grandparents work intensively with these very young children to address 
their problems at as early an age as possible, before they enter 
school. One-third of FGP volunteers serve over 8 million hours annually 
addressing literacy and pre-literacy problems with special needs 
children.
    Activities of the FGP volunteers with their assigned children 
include teaching parenting skills to teen parents; providing physical 
and emotional support to babies abandoned in hospitals; helping 
children with developmental, speech, or physical disabilities develop 
self-help skills; reinforcing reading and mathematics skills; and 
giving guidance and serving as mentors to incarcerated or other youth.
  --In Louisville, KY, Foster Grandparents spend there time mentoring 
        young mothers at the Home of the Innocents Teen Pregnant and 
        Parenting Program. Says one teen mom: ``I was always mad at 
        someone or something until Granny came. I sometimes took my 
        anger and frustration out on my young son. Granny--helped me to 
        understand that everyone has problems and we need to learn to 
        deal with them. She has shared with me things that she went 
        through in her lifetime and that has helped me see that I can 
        handle my life and be a good mother.''
                        fgp: the volunteer sites
    Third, the Foster Grandparent Program provides agencies and 
organizations providing services to special-needs children with a 
consistent, reliable, invaluable extra pair of hands 20 hours every 
week to assist in providing these services. Sixty-seven percent of FGP 
volunteers serve in public and private schools as well as sites which 
provide early childhood pre-literacy services to very young children, 
including Head Start. Nationally, Foster Grandparents serve through 
more than 8,400 public and private non-profit agencies and proprietary 
health care facilities including public and private schools, child care 
centers, hospitals, emergency shelters, and correctional facilities.
  --As part of NAFGPD's nationwide partnership with the National Head 
        Start Association which has seen a 28 percent increase in the 
        number of Foster Grandparents volunteering in Head Start 
        classrooms since 1997, Foster Grandparents Ida Lewis, 68, and 
        Eliza Price, 77, are trained by speech pathologist Janet King 
        at the Gordon Head Start Center in Lafayette County, MS, to 
        practice speech and language activities with 20 pre-school Head 
        Start children with speech and language impairments severe 
        enough to prevent them from succeeding in a regular school 
        environment. Says Ms. King, ``I have observed notable 
        improvement in the children's speech skills. (The Foster 
        Grandparents) are making a world of difference in the skills 
        these children will take with them to kindergarten and 
        hopefully will enable these children to succeed in regular 
        classrooms. The foster grandparents individual sessions have 
        given the speech therapy sessions an added dimension that we 
        never had available to us in the past.''
                      fgp: cost-effective service
    Lastly, the Foster Grandparent Program serves local communities in 
a high quality, efficient and cost-effective manner, saving local 
communities money by helping our older volunteers stay independent and 
healthy and out of expensive in-home or institutional care. Using the 
Independent Sector's 1998 valuation for one hour of volunteer service 
($14.30/hour), the value of the service given by Foster Grandparents 
annually is $352 million, and represents a 4-fold return on the federal 
dollars invested in FGP. The annual federal cost for one Foster 
Grandparent is $3,800--less than $4.00 per hour.
    The value local communities place on FGP and its multifaceted 
services is evidenced by the large amount of cash and inkind donations 
contributed by communities to support FGP. FGP's fiscal year 1998 
federal allocation was matched with over $34 million in non-federal 
donations from states and local communities in which Foster 
Grandparents volunteer. This represents a non-federal match of 41 
percent, or $.41 for every $1.00 in federal funds invested--well over 
the 10 percent local match required by law.
         the administration's fiscal year 2000 request for fgp
    The rapidly growing number of older people living at poverty-level 
incomes across the country represents a virtually untapped resource 
that must be utilized to help address the serious problems of today's 
children. In order to continue to provide these cost-effective services 
in even more local communities the Foster Grandparent Program requires 
more volunteers, and more locally-based programs. We need funding 
levels which will enable us to keep pace with the ever-increasing 
number of income eligible seniors--currently 6,000,000, a number which 
will grow to 13,200,000 by the year 2030--and the countless number of 
at risk children who will need the one-to-one attention of an older 
person who has the time and patience to help show them the way to 
independence and productive adulthood.
    Unfortunately, in a budget which requests increases in excess of 25 
percent ($110 million) for AmeriCorps and related programs, the 
Administration has proposed an increase of slightly more than $1.7 
million (1.8 percent) for the Foster Grandparent Program, the smallest 
increase requested for any of the programs administered by the 
Corporation for National Service. Rather than investing federal funds 
in FGP, the Administration's request appears to set as a priority a 360 
percent (nearly $4.00 million) increase for senior demonstration. The 
largest, oldest, and best-known of the three senior volunteer 
programs--the Foster Grandparent Program--is virtually ignored in this 
budget.
 the administration's fiscal year 2000 request for senior demonstration
    In the conference report accompanying the fiscal year 1999 
appropriations measure, Congress expressed strong concern regarding the 
Corporation for National Service's practice of using demonstration and 
regular program dollars to pay non-taxable ``stipend'' to individuals 
who do not meet income requirements set by Congress in the DVSA. In 
spite of Congress' concern, the Administration's budget narrative 
indicates that the $5.0 million requested for senior demonstration in 
fiscal year 2000 will be used to continue and expand this practice--to 
pay non-taxable stipend as an incentive to individuals who do not meet 
income eligibility requirements set by the DVSA.
    NAFGPD, along with the National Association of Retired and Senior 
Volunteer Program (RSVP) Directors, believes that using funds in this 
way is wrong, and violates the legislated purpose of the non-taxable 
stipend paid to FGP (and Senior Companion Program) volunteers: to 
enable those living on incomes at or below 125 percent of the poverty 
level to serve 20 hours every week at little or no cost to themselves. 
Even more basically--as taxpayers ourselves--we believe that using tax 
dollars to make such payments to people of means simply to motivate 
them to volunteer is fundamentally wrong. Every dollar appropriated by 
Congress to be used in this way is a dollar which cannot be used to 
seek out, engage, train, and enable a low-income senior to contribute 
to his community as a Foster Grandparent. Before we look to paying 
stipend to those seniors who already have multiple service 
opportunities available to them through the nearly 800 Retired and 
Senior Volunteer Programs nationwide, we must first have sufficient 
funds to engage every one of the 6,000,000 people currently eligible 
and able to serve as Foster Grandparents.
    To clarify: NAFGPD is not opposed to demonstration efforts which 
will improve the way we deliver our services, or which will help to 
test innovative program and volunteer activities. We are opposed to 
demonstration activities which, if implemented into the existing 
programs, are designed to change the very nature of FGP. Paying a non-
taxable ``stipend'' to individuals of any income level to volunteer 
will totally remove the low-income focus of FGP, a focus which has been 
a fundamental part of FGP's mission since 1965. We are opposed to 
funding any efforts, through senior demonstration or any other means, 
which will change this mission.
   nafgpd's fiscal year 2000 request for fgp and senior demonstration
    Given the growing number of low-income seniors eligible to serve 
and the staggering number of troubled and challenged children in 
America today, we believe that the Administration's request does not 
invest adequately for the future in the Foster Grandparent Program, and 
actually diverts funds which could be invested in FGP into 
demonstration activities we cannot and do not support. We ask that you 
(1) adopt a different fiscal year 2000 funding allocation for FGP, one 
which will more properly address the important role our programs must 
play in engaging more of our nation's low-income elders in addressing 
serious community needs in more communities nationwide; and (2) refrain 
from appropriating any federal dollars to senior demonstration as long 
as funds appropriated will be used to pay non-taxable stipend to 
individuals not meeting income requirements set by Congress.
    NAFGPD's fiscal year 2000 request is as follows:

                         [In millions of dollars]

Foster Grandparent Program....................................   104.560
Senior Demonstration....................................................

    We also request that the Committee include report language 
accompanying the fiscal year 2000 funding measure which supports and 
specifies the following allocation priorities for use of the fiscal 
year 2000 increases, and directs the Corporation for National Service 
to disburse funds in the following manner:
    1. For the Foster Grandparent and Senior Companion Programs, 
increase the stipend which enables low income volunteers to serve from 
$2.55/hour to $2.60/hour. Funds should be available to pay for the 
additional $.05 per hour for non-federally funded volunteers for one 
year. The last stipend increase--from $2.45/hour to $2.55/hour--
occurred in January, 1998.
    2. Award an administrative cost increase of 3 percent to each 
existing Foster Grandparent Program in order to maintain quality and 
sustain the work already being done by programs.
    3. In accordance with the Domestic Volunteer Service Act (DVSA), 
use \1/3\ of the increase over the fiscal year 1999 level to fund 
Program of National Significance (PNS) expansion grants to allow 
existing FGP programs to expand the number of volunteers serving in 
areas of critical need as identified by Congress in the DVSA, and not 
limited to America Reads activities.
    Finally: Begin 20 new Foster Grandparent Program projects in 
geographic areas currently unserved.
    All told, this funding proposal will generate opportunities for 
more than 1,900 new low-income senior volunteers contributing in excess 
of 2.0 million hours of service annually to more than 11,600 additional 
children with special and exceptional needs. In addition, 20 more 
communities will receive the multifaceted services of FGP, a small 
step--but an important step--toward NAFGPD's goal of beginning 100 new 
Foster Grandparent Programs nationwide over the next five years.
    A recent New York Times article (March 21, 1999) on volunteers and 
retirement stated that ``. . . Thousands of older people are on the 
waiting list for the Foster Grandparent program, in which 25,000 older 
adults whose income is below the poverty line receive a small stipend 
for volunteering 20 hours a week to be grandparents for disabled or 
disadvantaged youngsters. Many young people need mentors and foster 
grandparents, but lack of money precludes more participation.'' Our 
experiences, especially with long waiting lists of seniors waiting to 
serve, strongly support this statement. In addition, in communities 
which already have a Foster Grandparent Program, unfilled requests from 
local organizations for more Foster Grandparents are the rule, not the 
exception.. And when Congress provided funds for 25 new Foster 
Grandparent Programs in fiscal year 1998--the first new programs in 18 
years--125 high-quality applications were submitted by local community 
organizations nationwide.
    Although it is true that the population of better-educated, 
wealthier seniors will increase as the baby boomers age, a 1998 AARP 
survey conducted by Roper Starch Worldwide indicated a ``sea change'' 
in retirement patterns: the majority of these ``boomers'' intend to 
continue to keep their jobs and never retire from work. The 1998 
Independent Sector study showed that seniors who are still working are 
more likely to volunteer on an informal basis than to volunteer in a 
program like FGP, which requires 20 hours of service every week. It 
will be the ``boomers'' who have not acquired the skills needed to keep 
their jobs as they age--primarily those who have had low paying jobs 
and those who have been downsized to make room for technological 
advances--who will be available to volunteer every day, who will need 
FGP to provide them with opportunities to stay active and contribute.
    The message is clear: (1) the population of low-income seniors 
available to volunteer 20 hours every week is increasing; (2) 
communities need and want more Foster Grandparent volunteers; and (3) 
communities want more Foster Grandparent Programs.
    FGP needs more funds to serve more communities and engage more low-
income seniors in meeting the pressing needs being expressed 
nationwide. Your enhanced investment in FGP now will pay off in the 
short and long term--savings realized by local communities, savings 
realized as additional opportunities are provided for more older, low-
income Americans to stay active in their communities, and savings 
realized as that involvement helps older people to stay healthy and 
independent and children with special needs to become contributing 
members of society.
    Please help us tap one of the nation's only increasing natural 
resources--our low-income seniors--by supporting a total fiscal year 
2000 appropriation of $104.560 million for the Foster Grandparent 
Program, without diverting any precious and scarce funds to senior 
demonstration for fiscal year 2000.
                                 ______
                                 

                           MULTIPLE AGENCIES

         Prepared Statement of the American Nurses Association
    The American Nurses Association (ANA) appreciates this opportunity 
to comment on fiscal year (FY) 2000 appropriations for nursing 
education, nursing research and workforce programs. ANA is the only 
full-service professional organization representing the nation's 2.6 
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 associations.
    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. Most recently, the American 
Organization of Nurses Executives (AONE) released a survey on nursing 
staff shortages. ANA and the Division of Nursing collaborated with AONE 
in the survey development and review of the data. The survey confirms 
what ANA has been saying about the present status of demand for nursing 
services and the increased need for specialist nurses. Therefore, we 
believe that our shared 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 
increased 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
    Advanced practice nurses--registered nurses with education and 
clinical experience generally at a master's degree level--are providing 
primary care services in 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. Last year, Congress reauthorized 
these programs by enacting ``The Health Professions Partnership Act of 
1998'' Public Law 105-392. This law gives 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. Under 
Public Law 105-392, the improved Nurse Education Act (NEA), the 
Division of Nursing has the needed flexibility to focus on curriculum 
development and other programs to address the changing health care 
environment and assist in the preparation of more nurses who are able 
to function where there is a greater demand. NEA will better address 
the need for increasing the numbers of minority nurses available to 
provide culturally competent, linguistically appropriate health care 
services to underserved communities by providing funding to support 
projects that would increase nursing education opportunities for 
individuals from disadvantaged backgrounds. These nurses would then 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.
    With new legislation in place, it is crucial that the Division of 
Nursing be provided with the funding necessary to effectively implement 
these program changes. For fiscal year 1999, due to the work of this 
Subcommittee, the Nurse Education Act was funded at $67.8 million. This 
Subcommittee believed this was a sound investment in our country's 
health care. For fiscal year 2000, we are requesting an increase in 
funding of 10 percent over fiscal year 1999 to fund the Nurse Education 
Act programs at approximately $74 million. Additionally, ANA does not 
support the Administration's proposed reduced funding level for Title 
VII of the Public Health Service Act at a time when continued shortages 
of primary care providers still exist in certain parts of the country.
    The reauthorization consolidated the NEA into three new 
authorities. These authorities are as follows:
    Advanced education nurses.--Advanced education nurses are 
registered nurses trained in advanced degree programs, generally at a 
master's degree level. They provide primary care in lieu of physicians 
or provide an expanded type of primary care. This category includes 
nurse practitioners, nurse midwives, nurse anesthetists, clinical nurse 
specialists, nurse administrators, public health nurses and other 
nurses as determined by the Secretary of the Department of Health and 
Human Services. Traineeships for advanced nursing education will be 
provided under this category.
    Programs to increase workforce diversity.--Both overutilization of 
costly emergency services and decreased access to primary care have 
been associated with a low representation of minority health care 
providers. This reauthorization provides for increased flexibility in 
the use of funds to enhance diversity in nursing education and 
practice. It will support projects to increase nursing education 
opportunities for individuals from disadvantaged backgrounds--including 
racial and ethnic minorities. Some support will be provided through 
student scholarships or stipends and can be used for pre-entry 
preparation and retention activities. Continued funding for programs 
that access this type of funding is dependent on demonstrated outcomes.
    Projects to strengthen the capacity of basic nursing education.--
Funding under this category would assist programs toward expanding 
basic nurse education, thereby enhancing the basic nursing workforce. 
Priority areas identified include: skills development for practice in 
organized health care systems; nursing practice arrangements, care for 
underserved populations and other high risk groups; cultural 
competency; baccalaureate enrollment; career mobility; informatics 
education, including distance learning methodologies and other areas as 
needed. Nurse Managed clinics would be included under this category. A 
recent New York Times article reported that many of the nation's 
hospitals are experiencing a shortage of registered nurses, especially 
the specialized, highly trained nurses who staff operating rooms, 
emergency rooms, intensive care units and pediatric wards for high risk 
babies.
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 $2.3 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 2.6 
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. Research programs supported by the NINR address a 
number of critical public health and patient care questions. The 
research is driven by real and immediate problems encountered by 
patients and families. Study results offer the clear prospect of 
improving health , reducing morbidity and mortality, and lowering costs 
and demand for health care. Increased funding would enable an NINR 
initiative to develop and test interventions to help children with 
asthma and their parents prevent asthma attacks, monitor airway 
inflammation, and manage daily routines of care at home and at school. 
An increase in funding would also allow NINR to establish an initiative 
consistent with the recommendations of the Congressionally-established 
Diabetes Research Working Group. The specific focus would be to 
intensify clinical behavioral research to improve both patient 
adherence to diabetes treatment and quality of life. These 
interventions will result in lifestyle behaviors which will effectively 
reduce the risk of developing complications of diabetes or delay their 
onset. While we support the Administration's proposed 2 percent 
increase above fiscal year 1999 funding of $69.8 million for this 
program, we recommend a $20.9 million increase to fund NINR at $90.7 
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). 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 as clinicians, 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. These 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, MFP graduates 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. 
These graduates also work as teachers in schools of nursing that serve 
minority students, serving as role models and providing leadership to 
future nurses. We believe this program is a good investment in reducing 
mental health care costs and recommend funding of $2.0 million for 
fiscal year 2000 for the SAMHSA Clinical Training program.
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. AETCs reduce care costs by increasing 
treatment and care expertise which serves to ease the suffering of 
families and communities. It is for this reason that we recommend a 
funding level of $25 million for fiscal year 2000 for the AETCs.
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 
blood borne pathogens standard which provides significant protection to 
front-line health care providers from possible exposure to blood borne 
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 are the primary vehicle for the development and training of a 
corps of trained occupational health nurses and other safety 
professionals. We support the Administration's recommended fiscal year 
2000 funding of $212 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). Potential delays in the processing of 
complaints and holding representation elections may jeopardize the 
progress in employee and employer relations. ANA considers this a core 
independent agency function that must be preserved. We support the 
Administration's recommended fiscal year 2000 funding of $210 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 the increased occupational risks in 
nursing and their negative effect on nurses today and the future of 
this profession.
    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 support the 
Administration's recommendation for fiscal year 2000 funding of $388 
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 Stanley B. Peck, Executive Director, American 
                     Dental Hygienists' Association
    The American Dental Hygienists' Association (ADHA) is pleased to 
submit its recommendations regarding fiscal year 2000 appropriations 
for the Department of Health and Human Services (HHS) and the 
Department of Labor (DOL). ADHA is the largest national organization 
representing the professional interests of the more than 100,000 
registered dental hygienists (RDH) across the country. Dental 
hygienists are preventive oral health professionals, licensed in dental 
hygiene, who provide primary educational, clinical and therapeutic 
services supporting total health through the promotion of optimal oral 
health.
                        the nation's oral health
    Oral health is fundamental to total health. As former Surgeon 
General C. Everett Koop noted, ``if you don't have oral health, you're 
not healthy.'' Despite recent advances in preventing oral disease and 
maintaining oral health, oral diseases still afflict 95 percent of all 
Americans. Oral Health America/America's Fund for Dental Health reports 
that 20 million workdays and 9 million school days are lost annually 
because of oral health problems.
    According to Public Health Reports, dental caries is the single 
most common disease of childhood which is neither self limiting, like 
the common cold, nor amenable to a course of antibiotics, like an ear 
infection. Dental caries occur 5-8 times more commonly than asthma, the 
second most common disease of childhood. Despite well-noted reductions 
in decay prevalence, tooth decay--which is an infectious transmissible 
disease--still affects more than half of all children by second grade.
        cost-savings associated with preventive oral health care
    In contrast to most medical conditions, the three most common oral 
diseases--dental caries (tooth decay), gingivitis and periodontitis 
(gum and bone disease)--are proven to be preventable with the provision 
of regular oral health care. This proven ability translates into huge 
cost savings. Each $1 spent on preventive oral health care yields $8--
$50 in savings. Because of this, increased access to the preventive 
oral health services provided by dental hygienists will likely result 
in decreased oral health care costs per capita and, more importantly, 
improvements in the nation's oral and total health.
   dental caries (tooth decay) is an infectious transmissible disease
    Dental caries, popularly knows as tooth decay, is an infectious 
transmissible disease. Research shows that the presence of bacteria 
known as streptococcus mutans leads to dental caries in children. This 
decay causing bacteria is typically transferred from primary caregivers 
to young children between 22-26 months of age.
    The impact of oral disease extends well beyond the oral cavity. 
Research shows that the presence of periodontal or gum disease is 
linked to such life threatening conditions as cardiovascular disease, 
stroke, and pre-term deliveries. People suffering from gum disease are 
two or three times as likely to suffer from coronary artery disease 
than those without periodontal problems. Pregnant women with 
periodontal disease are seven times more likely to deliver pre-term low 
birthweight infants. This is because periodontitis is a bacterial 
infection and bacterial infection accelerates the production of labor 
inducing fluids, leading to the premature onset of labor. To further 
our understanding of the links between oral disease and systemic 
disease, research at the National Institute of Dental and Craniofacial 
Research (NIDCR) is vital.
                surgeon general's report on oral health
    The first-ever Surgeon General's Report on Oral Health is expected 
to be published this year. The Report is currently divided into various 
sections, including: what is oral health; what is the status of oral 
health in America; what are the implications of oral health status; how 
are oral health and oral diseases and conditions managed; and what can 
be done to enhance oral health throughout life stages. Publication of 
this Report recognizes the importance of oral health to total health.
         national institute of dental and craniofacial research
    The National Institute of Dental and Craniofacial Research (NIDCR) 
is one of the thirteen major biomedical research institutions within 
the National Institutes of Health. NIDCR has helped to revolutionize 
our knowledge of preventive health care by identifying the causes of 
preventable oral diseases and the appropriate strategies to combat 
them. One of the most successful public health projects in history--
water fluoridation--was launched more than 50 years ago as a result of 
research conducted by NIDCR's very first director. More recently, 
through NIDCR sponsored research we have:
  --showed unequivocally that dental caries and periodontitis are 
        bacterial infectious diseases;
  --made progress toward a vaccine against dental caries and other oral 
        infections;
  --improved adhesive sealants to protect teeth from the ravages of 
        dental caries;
  --discovered biomarkers associated with tumor growth and tumor 
        suppression associated with oral cancer;
  --pinpointed antibodies in saliva that are critical to maintenance of 
        oral tissue; and
  --demonstrated the importance of education and promotion activities 
        in assuring good oral health.
    NIDCR's work in dental research has resulted in better oral health 
for the nation and has helped curb increases in oral health care costs. 
Accordingly, ADHA requests that the Subcommittee appropriate $277 
million in fiscal year 2000 funding for NIDCR. This funding level will 
not only support NIDCR's many important projects but will help hold the 
line on increases in oral health care costs.
               title vii of the public health service act
    ADHA joins the Association of Schools of Allied Health Professions 
and others in calling for $8 million for ``Allied Health and Other 
Disciplines.'' Although allied health disciplines constitute 
approximately 60 percent of the health care work force, fiscal year 
1999 spending on allied health project grants, for example, was only 
$4.980 million.
                scholarships for disadvantaged students
    ADHA supports full funding for programs such as Scholarships for 
Disadvantaged Students which provides grants to health professions 
schools to assist in providing scholarships to individuals from 
disadvantaged backgrounds. This program was created to address serious 
problems in the delivery of health care to disadvantaged minorities. 
Full funding is critical to efforts to recruit more minorities into 
dental hygiene and other allied health professions.
                      centers for disease control
    The Division of Oral Health within the National Center for Chronic 
Disease and Health Promotion Prevention funded through the Centers for 
Disease Control (CDC) is a key support mechanism for state dental 
health programs. As a national leader in dental disease control and 
prevention, the Division of Oral Health provides consultation, 
training, promotional and educational support, disease surveillance, 
and other technical services to state and local governments and other 
professional, educational and citizen organizations. ADHA requests that 
the Division of Oral Health be funded at $10 million.
               agency for health care policy and research
    ADHA urges support for the Agency for Health Care Policy and 
Research (AHCPR) at $225 million. ADHA further urges the Subcommittee 
to direct AHCPR to develop an oral health research agenda focusing on 
preventive oral health care effectiveness, quality and outcomes 
measures for the preventive oral health services provided by dental 
hygienists. ADHA also encourages the Subcommittee to insist that the 
recommendations of the National Commission on Allied Health be 
fulfilled, including the recommendation that Congress allocate $5 
million to AHCPR each year for five years to conduct outcomes-based 
allied health research projects with near-term application to clinical 
practice.
   department of labor occupational safety and health administration
    ADHA believes that the Occupational Safety and Health 
Administration (OSHA) has an important role to play in promoting 
employee safety in the workplace. ADHA has historically supported 
OSHA's work with regard to the dental workplace, including OSHA's 
bloodborne pathogens standard, which governs employers' obligations 
concerning occupational exposure to the Hepatitis-B Virus (HBV), Human 
Immunodeficiency Virus (HIV) and other bloodborne pathogens, and OSHA's 
hazard communication standard, which requires the development of 
material safety data sheets (MSDSs) for hazardous chemicals so that 
workers know the hazards and identities of the chemicals they are 
exposed to while working, as well as the measures they can take to 
protect themselves. More recently ADHA has assisted OSHA in the 
development of an ergonomic standard. ADHA believes--and the scientific 
literature supports--the work relatedness of ergonomic disorders, such 
as carpal tunnel syndrome, among dental hygienists. ADHA urges the 
Subcommittee to appropriate monies such that OSHA will be able to 
promote employee safety in the workplace, including the dental hygiene 
workplace.
                               conclusion
    ADHA encourages the Subcommittee to continue its support of 
preventive health programs and preventive health professionals as the 
most responsible method for long-range reductions in national health 
care expenditures. ADHA is committed to working with this 
Subcommittee--and all Members of Congress--to improve the nation's oral 
health. We appreciate the opportunity to submit our views.
                                 ______
                                 
 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). On behalf of the more than 155,000 federal 
employees represented by NTEU across the government, I appreciate this 
opportunity to share NTEU's views on the fiscal year 2000 funding needs 
for agencies within the Department of Health and Human Services (HHS) 
and the Social Security Administration (SSA).
    NTEU is proud to represent employees in the following HHS 
divisions: Administration for Children and Families, Administration on 
Aging, Agency for Health Care Policy and Research, Health Resources and 
Services Administration, National Center for Health Statistics, Office 
for Civil Rights, Office of the Secretary, Program Support Center, and 
the Substance Abuse and Mental Health Services Administration. In 
addition, NTEU represents employees in SSA's Office of Hearings and 
Appeals.
    As the Chairman and Members of the Subcommittee already know too 
well, there is scarcely an agency within the federal government today 
that has been appropriately funded during the last several years. 
Discretionary spending cuts have come, not with the precision of a 
scalpel, but rather with the force on an axe. Public servants pride 
themselves on offering first class service to those who depend on the 
programs administered by their agencies. And they have continued to 
carry out their agencies' missions to the best of their abilities, but 
without additional resources, there is no question that programs the 
public depends on will begin to suffer. There is simply nowhere left to 
cut corners.
    With the current booming economy and budget surpluses projected for 
the near future, there is no economic rationale for continuing to bleed 
these agencies dry. Federal employees have done more than their share 
in creating the budget surplus we have today. Current and projected 
budget surpluses are the result of the sacrifices made by federal 
employees in terms of pay and benefit cuts and the squeeze agencies 
have experienced in terms of both a lack of funding for program 
administration, and restricted training opportunities for employees.
    Few would dispute the fact that federal employees helped achieve 
our current balanced federal budget. These same federal employees now 
want to share in the strong economy they helped create. For agencies 
funded under this appropriations measure, that means program direction 
funding levels reflective of the importance of the programs. Moreover, 
it means ensuring that agencies have the resources to provide training 
to employees to enable them to fulfill their agencies' missions to the 
best of their abilities.
    NTEU is deeply concerned that the House and Senate versions of the 
fiscal year 2000 Budget Resolution appear to ignore current agency 
funding problems and require further unrealistic cuts. The 
discretionary spending limits included in these resolutions are at 
least $10 billion below fiscal year 1999 levels. According to the 
Congressional Budget Office, these resolutions could result in cuts in 
federal programs of between $9 and $25 billion dollars. Spending cuts 
of this magnitude would wreak havoc with federal programs and could 
result in massive layoffs of federal employees. Furthermore, as much as 
NTEU appreciates this opportunity to discuss federal agency funding 
needs, I must also tell you that NTEU will aggressively oppose this and 
any other appropriations measure that fails to provide realistic 
funding for the federal government and its employees.
    The Administration's fiscal year 2000 budget addresses federal 
agency funding needs in a much more realistic fashion than the pending 
Budget Resolutions. For the Administration for Children and Families 
(ACF), the President's budget request includes $150 million for program 
direction. This request represents an increase of $6 million over ACF's 
fiscal year 1999 funding and will allow the agency to continue its 
vital travel and monitoring activities. ACF has primary responsibility 
for the overseeing welfare reform and for administering Head Start, 
child support, foster care and adoption programs. Past funding 
reductions have hampered ACF's ability to fulfill its mission and I 
implore this Subcommittee to insure that, at a minimum, the President's 
budget request in this area is adopted.
    For the Administration on Aging (AOA), the President's budget 
recommends $17 million in program administration funds, an increase of 
$2 million over the agency's fiscal year 1999 level. As you know, AOA 
administers the Older Americans Act and operates the Home Delivered 
Meals Program. This appropriation will help support the delivery of 
approximately 146 million meals in fiscal year 2000 and enable high 
risk individuals to remain in their homes and communities. With 45 
million Americans over 60 years of age, the worthwhile work of AOA is 
increasingly necessary. By the year 2030, the Census Bureau predicts 
these numbers will almost double to 88 million Americans over the age 
of 60. Moreover, to the extent appropriations for AOA assist older 
Americans in remaining out of nursing home facilities, the savings to 
the federal government in terms of Medicare and Medicaid expenditures 
is dramatic. AOA and its important programs deserve to be fully funded 
in fiscal year 2000.
    The Agency for Health Care Policy and Research (AHCPR) is slated to 
receive $2 million in program support funding in fiscal year 2000--the 
same as the agency received in fiscal year 1999. AHCPR helps turn 
knowledge gained through health care research into measurable 
improvements in the American health care system.
    For the Health Resources and Services Administration (HRSA), $128 
million in program management funds has been requested. This represents 
a small increase of $2 million over the agency's fiscal year 1999 
funding level and is the minimum acceptable to continue HRSA's 
important mission. In addition to improving access to health care for 
those Americans who are medically underserved, HRSA's mission includes 
an emphasis on programs that seek to expand health care options for 
pregnant women and their children.
    NTEU also wants to bring to your attention the important work of 
the National Center for Health Statistics (NCHS). This agency, within 
the Centers for Disease Control and Prevention, operates major 
statistical systems that track changes in health and health care. NCHS 
assesses the effectiveness of public health programs and identifies 
health problems and disease patterns across the United States. The 
President's request for a $15 million increase over the agency's fiscal 
year 1999 appropriation of $95 million reflects the critical work 
undertaken by this agency.
    The mission of HHS's Office of Civil Rights (OCR) includes 
enforcing civil rights statutes that prohibit discrimination in 
federally assisted health care and social services programs and 
coordinating government-wide enforcement of the Age Discrimination Act. 
In recognition of its important work, the Administration has requested 
$22 million for OCR fiscal year 2000, a $1 million increase over the 
fiscal year 1999 funding level. Despite OCR's enormous areas of 
responsibility, past appropriations levels have not kept pace with the 
agency's workload and staffing needs. It is critical that, at a 
minimum, the Administration's request be adopted.
    Employees in the Office of the Secretary support those activities 
associated with the Secretary's roles as chief policy officer and 
general manager of the Department. For fiscal year 2000, the 
Administration has requested $192 million in general departmental 
management funding, an increase of $7 million over 1999.
    The Program Support Center (PSC) was formed in 1996 by combining 
offices that had formerly reported to the Office of the Secretary and 
the Office of the Assistant Secretary for Health. PSC's formation was 
designed to minimize any duplication of functions and provide 
administrative, human resource and financial management services to 
components of HHS and other federal agencies. The fiscal year 2000 
request for PSC is $282 million, an $11 million increase over the 
Center's 1999 funding level.
    The Administration's fiscal year 2000 funding request for program 
management at the Substance Abuse and Mental Health Services 
Administration (SAMHSA), is $58 million, a $5 million increase over the 
agency's fiscal year 1999 funding. This increase is necessary if SAMHSA 
is to continue to strive to provide access and reduce barriers to 
mental health services. In addition, the agency's critical work in the 
areas of chronic drug use and substance abuse necessitate at least this 
$5 million increase in program funds. Lack of adequate funding in past 
years has resulted in forgone employee training and prevented project 
officers from travelling to oversee and monitor existing grant 
projects, areas critical to SAMHSA's mission.
    NTEU also represents employees in the Office of Hearings and 
Appeals (OHA) of the Social Security Administration (SSA). I want to 
bring to this Committee's attention the significant reorganization 
underway at OHA. This fast-track reorganization is designed to lead to 
hearings process improvements. NTEU is monitoring this reorganization, 
which, if not carefully crafted and implemented, could adversely affect 
hearing office operations.
    As the Chairman may know, many OHA attorneys are continuing to 
participate in the remarkably successful Senior Attorney Program. Under 
this innovative approach, senior attorneys review those disability 
cases most likely to result in a fully favorable decision before they 
are assigned to the disability que. Deserving claimants receive a 
decision in approximately 120 days instead of waiting an average of 320 
days for their cases to be heard through normal OHA channels.
    Although the massive increase in the disability backlog that OHA 
experienced in the early 90's has been contained and substantially 
reversed through programs such as the Senior Attorney Program, work 
remains to be done in this area. The beauty of the Senior Attorney 
Program is that it utilizes existing agency resources to the best 
advantage. Although NTEU has brought its concerns to both the agency's 
and Congress' attention, SSA has already taken steps to curtail the 
program. While the agency is developing other innovative programs for 
improving the disability process, NTEU urges SSA to continue the Senior 
Attorney Program without further reduction until a permanent, equally 
successful replacement program has been successfully implemented. If 
and when concerns in this area arise, NTEU will share them with this 
committee.
    Mr. Chairman, thank you again for this opportunity to share our 
views on the fiscal year 2000 needs of the agencies within the 
jurisdiction of your Committee.
                                 ______
                                 
Prepared Joint Statement of the National Alliance to End Homelessness; 
 National Coalition for the Homeless; National Coalition for Homeless 
 Veterans; National Health Care for the Homeless Council; National Law 
 Center on Homelessness and Poverty; and the National Network for Youth
                                summary
    Appropriate at least $1.025 billion for Consolidated Health 
Centers, including at least $88 million for the Health Care for the 
Homeless program, in fiscal year 2000.
    Appropriate at least $40 million for the Projects for Assistance in 
Transition from Homelessness program in fiscal year 2000.
    Appropriate at least $100 million for a targeted homeless addictive 
disorder treatment and recovery program in fiscal year 2000.
    Appropriate at least $120 million for Runaway and Homeless Youth 
Act programs (Basic Center, Transitional Living, Street Outreach) in 
fiscal year 2000.
    Appropriate at least $50 million for the Education for Homeless 
Children and Youth program in fiscal year 2000.
    Appropriate at least $10 million for the Homeless Veterans 
Reintegration Program in fiscal year 2000.
                              introduction
    The need for health, social support, education, and employment 
opportunities for the nation's homeless children, youth, and adults far 
outpaces the availability of services to them. That homelessness is a 
life circumstance for an increasing number of Americans places even 
greater pressure on the range of homeless programs within the U.S. 
Department of Health and Human Services (HHS), U.S. Department of 
Education (ED), and U.S. Department of Labor (DOL). Those programs are: 
HHS's Health Care for the Homeless program, Projects for Assistance in 
Transition from Homelessness program, and the Basic Center, 
Transitional Living, and Street Outreach programs for runaway and 
homeless youth; ED's Education for Homeless Children and Youth program; 
and DOL's Homeless Veterans Reintegration Program.
    While the activities funded by these programs alone will not end 
homelessness in this nation, they are nevertheless essential for 
assuring homeless persons' access to essential supports and for serving 
as gateways into to and extensions of mainstream systems. Accordingly, 
we urge Congress and the Administration to increase funding 
significantly for these homeless programs in fiscal year (FY) 2000. 
Appropriations increases for these programs and funding of a homeless 
addictive disorder treatment and recovery program would serve to 
redress the gap between supports available and increasing need for our 
nation's homeless population.
                      health care for the homeless
    The Health Care for the Homeless (HCH) program (one of the programs 
within the consolidated health center cluster), within HHS's Health 
Resources and Services Administration, assures that homeless people 
have access to health care services through integrated systems of care. 
As well as providing primary care, diagnostic, preventive, emergency 
medical, pharmaceutical, and addictive and mental disorder services, 
HCH projects also conduct intensive outreach, case management, and 
housing, income, and transportation linkage activities. HCH projects 
are initiated and managed at the community level. HHS estimates that 
HCH projects serve only about one quarter of persons experiencing 
homelessness within a given year.
    HCH projects and other health centers are overwhelmed by a 
burgeoning demand for services associated with increasing numbers of 
individuals without health insurance. This reality places an enormous 
burden on HCH projects and other community health providers, who are 
obligated to provide services regardless of the individual or family's 
ability to pay for them. Furthermore, an increase in the number of 
homeless people, brought on by recent changes to the Supplemental 
Security Income (SSI) program, which terminated income and health 
benefits for individuals with addictive disorders, and other 
socioeconomic factors, presents an expanded population of patients whom 
HCH projects and other community health providers are responsible to 
serve. The phase-out of Medicaid cost-based reimbursement to HCH 
projects and other health centers and the increased enrollment of 
Medicaid beneficiaries in managed care programs are reducing the amount 
of Medicaid funds available to HCH projects, thus presenting an 
additional major challenge to their ability to provide indigent care.
    Increased federal funds will allow the HCH program to expand 
services to the three-fourths of the homeless population still without 
basic health care--both in the way of capacity increases of current 
projects and the establishment of new project sites--and enable HCH 
projects to remain financially viable in the increasingly market-
oriented health service environment.
    We urge Congress and the Administration to appropriate at least 
$1.025 billion for Consolidated Health Centers, including at least $88 
million for HCH, in fiscal year 2000.
        projects for assistance in transition from homelessness
    The Projects for Assistance in Transition from Homelessness (PATH) 
program, within HHS's Substance Abuse and Mental Health Services 
Administration (SAMHSA), makes funds available to states to assist them 
in providing outreach, screening and diagnosis, habilitation and 
rehabilitation, community mental health services, substance abuse 
treatment (for people with co-occurring addictive and mental 
disorders), case management, residential supervision, and limited 
housing services for homeless people with serious mental illness. PATH 
funds are allocated to all fifty states, the District of Columbia, and 
the U.S. territories, which then distribute the funds to a broad range 
of service providers--approximately 350 in number--who then deliver 
actual services.
    While PATH has enabled many homeless people to return to secure and 
stable lives, limited funds preclude the program from reaching the 
universe of homeless people with serious mental illness. This group 
continues to grow as a result of a new wave of deinstitutionalization 
of patients from mental health facilities and the denial of services or 
premature and unplanned discharge brought about by managed care 
arrangements.
    Additional federal funds are necessary for PATH to reach the 
substantial number of homeless mentally ill people still not receiving 
mental health services or losing mental health services.
    We urge Congress and the Administration to appropriate at least $40 
million for PATH in fiscal year 2000.
  runaway and homeless youth act programs (basic center, transitional 
                        living, street outreach)
    Runaway and Homeless Youth Act (RHYA) programs, within HHS's 
Administration for Children and Families, support cost-effective, 
community-based services that protect youth from the harms of life on 
the streets and either reunify them safely with family or find 
alternative placements. The Basic Center Program provides grants to 
support temporary shelter for youth and counseling for youth and their 
families. The Transitional Living Program provides grants to support 
longer-term shelter as well as independent living services for youth. 
The Street Outreach Program provides grants to support street-based 
outreach and education to runaway, homeless, and street youth who have 
been sexually abused or are at risk of sexual abuse.
    RHYA programs provide crucial housing, education, life skills, and 
other opportunities and supports to vulnerable youth at a pivotal 
juncture in their lives--when they will be either plunged into 
homelessness and poverty or achieve stability and independence. 
Regrettably--for both the youth themselves and for the nation at 
large--the need for comprehensive services continues to outpace the 
ability of RHYA programs to provide them.
    We note that the Administration's fiscal year 2000 budget proposes 
a $5 million increase in the Transitional Living Program as part of a 
broader initiative to assure the successful transition to adulthood for 
former foster youth and other youth in high-risk situations. Many TLP 
beneficiaries access these projects through Basic Center and Street 
Outreach projects, thus increases in all three RHYA programs are 
necessary.
    We urge Congress and the Administration to appropriate at least 
$120 million for RHYA programs in fiscal year 2000.
           homeless addictive disorder treatment and recovery
    HHS does not currently administer an addictive disorder treatment 
and recovery program targeted to the unique needs and life 
circumstances of homeless people, as it does for primary care and 
mental health. Instead, it is assumed that homeless youth and adults 
with addictive disorders will obtain treatment and recovery housing 
through the mainstream substance abuse treatment system.
    But, the mainstream system does not adequately reach the homeless 
population. Homeless people, who are difficult to contact, are readily 
dropped from extensive waiting lists for mainstream treatment services. 
Further, community-based mainstream programs often refuse to accept 
homeless people. And community-based health care providers, such as HCH 
projects, lack the fiscal or programmatic capacity to provide addictive 
disorder treatment services to all in need.
    For those homeless people who are lucky enough to enter the 
treatment system, lack of recovery housing frequently renders the 
treatment less effective. Successful addiction recovery requires the 
stability of continuous access to needed health care, enabling and 
supportive services, and a place to live. Homeless people, however, are 
lacking these necessities and are therefore likely to participate 
repeatedly in the same stage of the treatment cycle. They then are 
typically discharged back into the environments in which their 
addictive disorders took hold--streets or emergency shelters--where 
they are at far greater risk of relapse than if they had been 
discharged to a stable living situation. Thus, a ``revolving door'' 
emerges, resulting in a waste of precious human and financial capital.
    Alternative models for delivering addictive disorder treatment and 
recovery services to homeless people that address these flaws in the 
mainstream system exist and have been proven effective in demonstration 
projects sponsored by HHS's National Institute on Alcohol Abuse and 
Alcoholism. Unfortunately, federal funding has not been made available 
to build on these findings in a concentrated way--a problem that a 
targeted homeless addictive disorder treatment and recovery program 
would address.
    We urge Congress and the Administration to appropriate at least 
$100 million for an addictive disorder treatment and recovery program 
targeted to the unique needs and life circumstances of homeless people 
in fiscal year 2000.
               education for homeless children and youth
    The Education for Homeless Children and Youth (EHCY) program, 
within ED's Office of Elementary and Secondary Education, assures that 
homeless children and youth have the opportunity to enroll, attend, and 
succeed in school. According to numerous studies, homeless children 
suffer disproportionately from health problems, nutritional 
deficiencies, and developmental delays. Schooling addresses these 
deficits by providing stable learning, continuous socialization, and 
food services during an otherwise chaotic and desperate time. Homeless 
children face significant barriers in gaining entry to public school 
and preschool programs due to the transience of their living situation. 
The EHCY program removes obstacles to enrollment and retention by 
establishing liaisons between schools and shelters and providing 
funding for transportation, tutoring, school supplies, and the 
coordination of statewide efforts to remove barriers. The EHCY program 
has made a difference for homeless children. The percentage of homeless 
school age children attending school regularly has increased from only 
50 percent prior to establishment of the program to 86 percent in the 
1990s.
    Additional funding is necessary to enroll and retain in school the 
at least 14 percent of school-age homeless children and at least 70 
percent or more of pre-school age homeless children still not enrolled. 
Further, school systems are being challenged to respond to the 
increases in family homelessness in their communities.
    We urge Congress and the Administration to appropriate at least $50 
million for EHCY in fiscal year 2000.
                homeless veterans reintegration program
    The Homeless Veterans Reintegration Program (HVRP), within DOL's 
Veterans Employment and Training Service, provides job training to 
homeless veterans. Although small, HVRP is the primary job training 
program accessible to homeless veterans. According to DOL, Job Training 
Partnership Act (JTPA) programs served only 2052 homeless veterans in 
the 1995 program year, compared to 7,432 homeless veterans served that 
same year through HVRP. While successful, HVRP has been able to serve 
only a small portion of the homeless veteran population due to 
insufficient funding.
    We urge Congress and the Administration to appropriate at least $10 
million for HVRP in fiscal year 2000.
                                summary
    We urge Congress and the Administration to provide significant 
increases in fiscal year 2000 for the few programs targeted 
specifically for homeless children, youth, and adults. We look forward 
to working with Congress and the Administration to assure growth in the 
homeless programs of the U.S. Departments of Health and Human Services, 
Education, and Labor.

                        [In millions of dollars]
------------------------------------------------------------------------
                                         Fiscal years--
                                     ----------------------   Homeless
               Program                             2000        orginal
                                        1999   President's     request
                                      enacted     request
------------------------------------------------------------------------
Consolidated Health Centers.........   925        945             1,025
(Health Care for the Homeless)......   (79)       (81)              (88)
Projects for Assistance in              26         31                40
 Transition from Homelessness.......
Runaway and Homeless Youth Act          74         79               120
 programs (Basic Center,
 Transitional Living, Street
 Outreach)..........................
Homeless Addictive Disorder           .......  ...........          100
 Treatment and Recovery.............
Education for Homeless Children and   28.8       31.7                50
 Youth..............................
Homeless Veterans Reintegration          3          5                10
 Program............................
------------------------------------------------------------------------



       LIST OF WITNESSES, COMMUNICATIONS, AND PREPARED STATEMENTS

                              ----------                              
                                                                   Page
Alexander, Duane, M.D., Director, National Institute of Child 
  Health and Human Development, National Institutes of Health, 
  Department of Health and Human Services........................    95
    Letter to Senator Cochran....................................   177
    Prepared statement...........................................   124
Allen, W. Ron, president, National Congress of American Indians, 
  prepared statement.............................................   519
Allison, Dr. Sherry R., on behalf of the National Indian 
  Education Association, prepared statement......................   636
Altenkirch, Dr. Robert A., vice-president for research, 
  Mississippi State University, prepared statement...............   471
Alzheimer's Association, prepared statement......................   444
American Academy of:
    Orthopaedic Surgeons, prepared statement.....................   446
    Otolaryngology Head and Neck Surgery, prepared statement.....   439
    Physician Assistants, prepared statement.....................   565
American Association of:
    Blood Banks, prepared statement..............................   503
    Colleges of Nursing, prepared statement......................   603
    Nurse Anesthetists, prepared statement.......................   506
American:
    College of Preventive Medicine, prepared statement...........   556
    Gas Association, prepared statement..........................   592
    Gastroenterological Association, prepared statement..........   367
    Heart Association, prepared statement........................   338
    Indian Higher Education Consortium, prepared statement.......   633
    Nurses Association, prepared statement.......................   667
    Public Power Association, prepared statement.................   588
    Society of Pediatric Nephrology, prepared statement..........   443
    Society of Tropical Medicine and Hygiene, prepared statement.   397
Ammerman, Howard K., Ph.D., prepared statement...................   654
Aquilino, Jr., John D., prepared statement.......................   343
Association of:
    Population Centers, prepared statement.......................   359
    Teachers of Preventive Medicine, prepared statement..........   556

Bahreini, M.H., prepard statement................................   629
Baker, Dr. Kate, et al., letter from.............................   356
Battey, James F., M.D., Ph.D., Director, National Institute on 
  Deafness and Other Communication Disorders, National Institutes 
  of Health, Department of Health and Human Services.............    95
    Prepared statement...........................................   138
Bazelon, Judge David L., Center for Mental Health Law, prepared 
  state- ment....................................................   509
Beck, Deb, president, Drug and Alcohol Service Providers 
  Organization of Pennsylvania, prepared statement...............   571
Berg, Steven R., director of programs, National Alliance to End 
  Homelessness, prepared statement...............................   589
Biotechnology Industry Organization, prepared statement..........   375
Bosch, Erin, prepared statement..................................   344
Boswell, Jerry, national spokesman, Citizens Commission on Human 
  Rights, prepared statement.....................................   577
Boxer, Richard J., board of directors, Lymphoma Research 
  Foundation of America, prepared statement......................   419
Brain Injury Association, Inc., prepared statement...............   575
Brinkley, William R., Ph.D., president, Federation of American 
  Societies for Experimental Biology, prepared statement.........   474
Buzbee, Richard E., prepared statement...........................   346
Bye, Dr. Raymond E., Jr., interim vice president for research, 
  Florida State University, prepared statement...................   331
Byrd, Hon. Robert C., U.S. Senator from West Virginia:
    Prepared statement...........................................   222
    Questions submitted by.......................................    86

Carey, Robert M., dean and James Carroll Flippin Professor of 
  Medical Science, University of Virginia School of Medicine, 
  Charlottesville, VA, prepared statement........................   383
Carr, Kelly, managing director, Museums & Universities Supporting 
  Educational Enrichment, prepared statement.....................   374
Cassman, Marvin, Ph.D., Director, National Institute of General 
  Medical Sciences, National Institutes of Health, Department of 
  Health and Human Services......................................    95
    Prepared statement...........................................   122
City of Miami Beach, FL, prepared statement......................   627
Coalition for:
    American Trauma Care, prepared statement.....................   538
    Health Funding, prepared statement...........................   540
Cochran, Hon. Thad, U.S. Senator from Mississippi:
    Opening statements..........................................25, 237
    Prepared statement...........................................   238
College on Problems of Drug Dependence, prepared statement.......   428
Collins, Francis S., M.D., Ph.D., Director, National Human Genome 
  Research Institute, National Institutes of Health, Department 
  of Health and Human Services...................................    95
    Prepared statement...........................................   152
Cooley's Anemia Foundation, prepared statement...................   449
Conron, Elizabeth, founding member, Facioscapulohumeral Society, 
  Inc., prepared statement.......................................   467
Council of State and Territorial Epidemiologists, prepared 
  statement......................................................   545
Cowley, Terrie, president, TMJ Association, Ltd., prepared 
  statement......................................................   460
Craig, Hon. Larry E., U.S. Senator from Idaho, prepared 
  statements...................................................180, 223
Crapo, Dr. James, chairman, Department of Medicine, National 
  Jewish Medical and Research Center, prepared statement.........   392
Crawford, John M., BDS, Ph.D., professor of Clinical 
  Periodontics, Department of Periodontics, College of Dentistry, 
  University of Illinois at Chicago, prepared statement..........   441
Cystic Fibrosis Foundation, prepared statement...................   432

Davila, David, M.D., medical director, Baptist Medical Center--
  Sleep Disorders Center, representing the National Sleep 
  Foundation, prepared statement.................................   515
DeLaney, Hon. Paula M., mayor, Gainesville, FL, prepared 
  statement......................................................   380
Dietz, Harry C., M.D., prepared statement........................   349
Downey, Morgan, executive director, American Obesity Association, 
  prepared statement.............................................   490

Epilepsy Foundation, prepared statement..........................   336

Fauci, Anthony S., M.D., Director, National Institute of Allergy 
  and Infectious Diseases, National Institutes of Health, 
  Department of Health and Human Services........................    95
    Prepared statement...........................................   118
Feder, Miriam, executive director, Dystrophic Epidermolysis 
  Bullosa Research Association of America, Inc., prepared 
  statement......................................................   347
Feinstein, Hon. Dianne, U.S. Senator from California:
    Opening statement............................................    17
    Prepared statements.........................................19, 233
    Questions submitted by......................................72, 256
Fischbach, Gerald, M.D., Director, National Institute of 
  Neurological Disorders and Stroke, National Institutes of 
  Health, Department of Health and Human Services................    95
    Prepared statement...........................................   116
Fish, Robert, president, Santa Rosa Memorial Hospital, Santa 
  Rosa, CA, prepared statement...................................   554
Flynn, Laurie, executive director, National Alliance for the 
  Mentally Ill, prepared statement...............................   456
Ford, Michael Q., executive director, National Nutritional Foods 
  Association, prepared statement................................   402
Foreman, Spencer, M.D., president, Montefiore Medical Center, the 
  Bronx, New York, prepared statement............................   582
Foundation for Ichthyosis and Related Skin Types, prepared 
  statement......................................................   372
Freundlich, Jerry, founder and president, Cure for Lymphoma 
  Foundation, prepared statement.................................   493

Genome Action Coalition, prepared statement......................   448
Gipp, David M., president, United Tribes Technical College, 
  prepared statement.............................................   622
Gish, Brent, president, National Indian Impacted Schools 
  Association, prepared statement................................   616
Gorden, Phillip, M.D., National Institute of Diabetes and 
  Digestive and Kidney Diseases, National Institutes of Health, 
  Department of Health and Human Services........................    95
    Prepared statement...........................................   113
Gordis, Enoch, M.D., Director, National Institute on Alcohol 
  Abuse and Alcoholism, National Institutes of Health, Department 
  of Health and Human Services...................................    95
    Prepared statement...........................................   147
Gorosh, Kathye, project director, the CORE Center, prepared 
  statement......................................................   532
Gorton, Hon. Slade, U.S. Senator from Washington, questions 
  submitted by..................................................88, 195
Grady, Patricia A., Ph.D., R.N., Director, National Institute of 
  Nursing Research, National Institutes of Health, Department of 
  Health and Human Services......................................    95
    Prepared statement...........................................   150
Gregg, Hon. Judd, U.S. Senator from New Hampshire, opening 
  statement......................................................    29
Greenberg, Warren, chairman on lobbying/legislation, the Mended 
  Hearts, Inc., prepared statement...............................   345
Grupenhoff, John T., Ph.D., executive vice president, National 
  Association of Physicians for the Environment, prepared 
  statement......................................................   352

Haley, Melissa, executive vice president, Children's Heart 
  Foundation, prepared statement.................................   488
Harkin, Hon. Tom, U.S. Senator from Iowa:
    Opening statements..........................................15, 219
    Prepared statements.....................................16, 96, 221
    Questions submitted by......................................70, 198
Harlan, William, M.D., Acting Director, National Center for 
  Complementary and Alternative Medicine, National Institutes of 
  Health, Department of Health and Human Services................    95
    Prepared statement...........................................   157
Henderson, Carol C., executive director, Washington Office, 
  American Library Association, prepared statement...............   656
Herman, Hon. Alexis M., Secretary, Office of the Secretary, 
  Department of Labor............................................   265
    Prepared statement...........................................   268
    Summary statement............................................   266
Herndon, Ron, president, National Head Start Association, 
  prepared statement.............................................   612
Hodes, Richard J., M.D., Director, National Institute on Aging, 
  National Institutes of Health, Department of Health and Human 
  Services.......................................................    95
    Prepared statement...........................................   132
Hollings, Hon. Ernest F., U.S. Senator from South Carolina, 
  opening statement..............................................    32
Humane Society of the United States, prepared statement..........   353
Hutchison, Hon. Kay Bailey, U.S. Senator from Texas, questions 
  submitted by...................................................    90
Hyman, Steven E., M.D., Director, National Institute of Mental 
  Health, National Institutes of Health, Department of Health and 
  Human Services.................................................    95
    Prepared statement...........................................   141

Inouye, Hon. Daniel K., U.S. Senator from Hawaii:
    Opening statement............................................    22
    Questions submitted by......................................91, 212
Interstate Conference of Employment Security Agencies, prepared 
  state- ment....................................................   326

James, Hon. Sharpe, mayor, Newark, New Jersey, prepared statement   641
Janger, Stephen A., president, Close Up Foundation, prepared 
  statement......................................................   630
Jeffrey Modell Foundation, Inc., prepared statement..............   452
Joint Council of Allergy, Asthma, and Immunology, prepared 
  statement......................................................   437
Jollivette, Cyrus M., vice president for Government relations, 
  prepared statement.............................................   388

Katz, Stephen I., Ph.D., Director, National Institute of 
  Arthritis and Musculoskeletal and Skin Diseases, National 
  Institutes of Health, Department of Health and Human Services..    95
    Prepared statement...........................................   135
Kelly, John, vice president, Recording for the Blind and 
  Dyslexic, prepared statement...................................   647
Keusch, Gerald, M.D., Director, Fogarty International Center, 
  National Institutes of Health, Department of Health and Human 
  Services.......................................................    95
    Prepared statement...........................................   160
Kirschstein, Ruth, M.D., Deputy Director, National Institutes of 
  Health, Department of Health and Human Services................    95
    Prepared statement...........................................   100
Klausner, Richard, M.D., Director, National Cancer Institute, 
  National Institutes of Health, Department of Health and Human 
  Services.......................................................    95
    Prepared statement...........................................   104
Knaub, Patricia, dean, College of Human Environmental Sciences, 
  Oklahoma State University, prepared statements...............325, 363
Kohl, Hon. Herb, U.S. Senator from Wisconsin:
    Opening statement............................................    31
    Prepared statement..........................................32, 242
    Questions submitted by.................................70, 213, 253
Kupfer, Carl, M.D., Director, National Eye Institute, National 
  Institutes of Health, Department of Health and Human Services..    95
    Prepared statement...........................................   126
Kyl, Hon. Jon, U.S. Senator from Arizona:
    Opening statement............................................    21
    Questions submitted by......................................69, 196

Latino Public Broadcasting Project, prepared statement...........   648
Lenfant, Claude, M.D., Director, National Heart, Lung, and Blood 
  Institute, National Institutes of Health, Department of Health 
  and Human Services.............................................    95
    Prepared statement...........................................   107
Lennie, Peter, Ph.D., dean for science and professor of neural 
  science, prepared statement....................................   599
Leshner, Alan I., Ph.D., Director, National Institute on Drug 
  Abuse, National Institutes of Health, Department of Health and 
  Human Services.................................................    95
    Prepared statement...........................................   144
Lindberg, Donald A. B., M.D., Director, National Library of 
  Medicine, National Institutes of Health, Department of Health 
  and Human Services.............................................    95
    Prepared statement...........................................   163
Liss, Cathy, senior research associate, Society for Animal 
  Protective Legislation, prepared statement.....................   485
Lokovic, Chief Mater Sergeant, James E. (Ret.), director, 
  Military and Government Relations, Air Force Sergeants 
  Association, prepared statement................................   610

Markey, Patricia E., legislative consultant, United Distribution 
  Companies, prepared statement..................................   595
McCabe, Preston, president, Pinon Chapter and Pinon Community 
  School Board, prepared statement...............................   625
McDonough:
    Allison, member, JDF Lay Review Committee, Juvenile Diabetes 
      Foundation International, prepared statement...............   390
    John J., chairman of the board, Juvenile Diabetes Foundation 
      International, prepared statement..........................   390
Meier, Tom, president, Elmira College, Elmira, NY, prepared 
  statement......................................................   644
Meltzer, Donna Ledder, chairman, Friends of NICHD Coalition, 
  prepared statement.............................................   500
Millar, William W., president, American Public Transit 
  Association, prepared statement................................   511
Monsky, Sharon L., chairman, board of directors, Scleroderma 
  Research Foundation, prepared statement........................   494
Murray, Hon. Patty, U.S. Senator from Washington:
    Opening statement............................................   234
    Prepared statement...........................................   236

Nathanson, Neal, M.D., Director, Office of AIDS Research, 
  Department of Health and Human Services........................    95
    Prepared statement...........................................   166
National:
    Alliance for Eye and Vision Research, prepared statement.....   425
    Alliance to End Homelessness, prepared statement.............   675
    Alopecia Areata Foundation, prepared statement...............   472
    Asian American Telecommunications Association, prepared 
      statement..................................................   648
    Association of Anorexia Nervosa and Associated Disorders, 
      prepared statement.........................................   371
    Association of Pediatric Nurse Associates and Practitioners, 
      prepared statement.........................................   423
    Black Programming Consortium, prepared statement.............   648
    Coalition for:
        Cancer Research, prepared statement......................   434
        Homeless Veterans, prepared statement....................   675
        The Homeless, prepared statement,........................   675
    Depressive and Manic-Depressive Association, prepared 
      statement..................................................   404
    Health Care for the Homeless Council, prepared statement.....   675
    Law Center on Homelessness and Poverty, prepared statement...   675
    Military Family Association, prepared statement..............   618
    Minority Public Broadcasting Consortia, prepared statement...   648
    Network for Youth, prepared statement........................   675
    Psoriasis Foundation, prepared statement.....................   395
    Rural Health Association, prepared statement.................   558
Native American Public Telecommunications, prepared statement....   648
Novacek, Dr. Michael J., Ph.D., senior vice president and 
  provost, American Museum of Natural History, prepared statement   384
Novis, Susie, president, International Myeloma Foundation, 
  prepared statement.............................................   462
NYU School of Medicine, prepared statement.......................   412

Olden, Kenneth, Ph.D., Director, National Institute of 
  Environmental Health Sciences, National Institutes of Health, 
  Department of Health and Human Services........................    95
    Prepared statement...........................................   129
Omenn, Gilbert S., M.D., Ph.D., executive vice president for 
  medical affairs, University of Michigan, and CEO, University of 
  Michigan Health System, prepared statement.....................   414
O'Toole, Patrice, assistant director, Federation of Behavioral, 
  Psychological, and Cognitive Sciences, prepared statement......   606
One Voice/the American Coalition for Abuse Awareness, prepared 
  statement......................................................   477

Pacific Islanders in Communications, prepared statement..........   648
Pasinski, Theodore, president, St. Joseph's Hospital Health 
  Center, prepared statement.....................................   580
Peck, Stanley B., executive director, American Dental Hygienists' 
  Association, prepared statement................................   671
Perez, Daniel Paul, president, Facioscapulohumeral Society, Inc., 
  prepared statement.............................................   467
Peters, Duane, director of communications and advocacy, Lupus 
  Foundation of America, Inc., prepared statement................   465
Philadelphia College of Osteopathic Medicine, prepared statement.   552
Pierson, Carol, president and CEO, National Federation of 
  Community Broadcasters, prepared statement.....................   661
Population Association of America, prepared statement............   359
Pritchard, Eugene, president, Condell Medical Center, 
  Libertyville, IL, prepared statement...........................   585

Rasmussen, Dwight (Salt Lake City, UT), president, National 
  Association of Senior Companion Project Directors, prepared 
  statement......................................................   650
Reingold, Dr. Stephen, vice president, research programs, 
  National Multiple Sclerosis Society, prepared statement........   365
Research Society on Alcoholism, prepared statement...............   408
Riley, Hon. Richard W., Secretary, Office of the Secretary, 
  Department of Education........................................   217
    Prepared statement...........................................   228
    Summary statement............................................   224
Roberts, Adam, research associate, Society for Animal Protective 
  Legislation, prepared statement................................   485
Rock Point Community School Board, prepared statement............   615
Rossello, Hon. Pedro, Governor of Puerto Rico, prepared statement   553
Rotary International, prepared statement.........................   416

Safety Net Coalition, prepared statement.........................   516
Samuelson, Joan I., J.D., president, Parkinson's Action Network, 
  prepared statement.............................................   421
Scrimshaw, Susan, president-elect, Association of Schools of 
  Public Health, prepared statement..............................   567
Shalala, Hon. Donna, Secretary, Office of the Secretary, 
  Department of Health and Human Services........................     1
    Prepared statement...........................................     6
    Summary statement............................................     3
Skelly, Tom, Director, Budget Service, Department of Education...   217
Slavkin, Harold, D.D.S., Director, National Institute of Dental 
  and Craniofacial Research, National Institutes of Health, 
  Department of Health and Human Services........................    95
    Prepared statement...........................................   110
Smith, Mike, Acting Deputy Secretary, Office of the Secretary, 
  Department of Education........................................   217
Society of Toxicology, prepared statement........................   407
Specter, Hon. Arlen, U.S. Senator from Pennsylvania:
    Opening statements......................................1, 217, 265
    Questions submitted by............................35, 180, 248, 286
Spector, Stephen A., M.D., chair, executive committee, Pediatric 
  AIDS Clinical Trials Group, prepared statement.................   454
Spina Bifida Association of America, prepared statement..........   399
Stephens, Phillip E., National Bladder Foundation, prepared 
  statement......................................................   517
Stevens, Christine, secretary, Society for Animal Protective 
  Legislation, prepared statement................................   485
Stevens, Hon. Ted, U.S. Senator from Alaska:
    Opening statements..........................................24, 218
    Questions submitted by......................................67, 251

Texas Neurofibromatosis Foundation, prepared statement...........   409
Thilly, William G., president, American Association of University 
  Environmental Health Science Centers, prepared statement.......   335
Thompson, Travis, Ph.D., director, John F. Kennedy Center for 
  Research on Human Development, Vanderbilt University; chairman, 
  Mental Retardation and Developmental Disabilities Research 
  Center Directors Organization, prepared statement..............   496
Tobias, Robert M., national president, National Treasury 
  Employees Union, prepared statement............................   673
Tri-Council for Nursing, prepared statement......................   332

University of Medicine and Dentistry of New Jersey, prepared 
  statement......................................................   535
Vaitukaitis, Judith L., M.D., Director, National Center for 
  Research Resources, National Institutes of Health, Department 
  of Health and Human Services...................................    95
    Prepared statement...........................................   155
Van Coverden, Tom, CEO, National Association of Community Health 
  Centers, prepared statement....................................   549
Varmus, Harold E., M.D., Director, National Institutes of Health, 
  Department of Health and Human Services........................    95
    Prepared statement...........................................    98
    Summary statement............................................    97
Ventre, Francis T., president, Montgomery County (MD) Stroke 
  Club, prepared statement.......................................   345
Von Hoff, Daniel D., M.D., president, American Association for 
  Cancer Research, prepared statement............................   430

Watkins, Jane (Orlando, FL), president, National Association of 
  Foster Grandparent Program Directors, prepared statements....650, 663
Williams, Dennis P., Deputy Assistant Secretary, Budget, National 
  Institutes of Health, Department of Health and Human Services..    96

York, Nan (Newport News, VA), president, National Association of 
  Retired and Senior Volunteer Program Directors, prepared 
  statement......................................................   650


                             SUBJECT INDEX

                              ----------                              

                        DEPARTMENT OF EDUCATION

                        Office of the Secretary

                                                                   Page

Additional Committee questions...................................   248
Accountability, improving........................................   229
Achievement standards for English for limited English proficient 
  students.......................................................   262
Alternative routes to certification--rigorous standards..........   255
America Reads:
    Challenge....................................................   225
    Program......................................................   232
Americans, adult improving the skills of.........................   231
Budget:
    Caps and funding choices.....................................   232
    Federal education funds as percent of total..................   234
    Increases, Pell grant and work-study.........................   225
    Special education............................................   244
California class size waiver.....................................   257
Classroom, 95 percent to the.....................................   241
College completion challenge grants compared to the student 
  support services program.......................................   250
Comprehensive school reform and charter schools..................   226
Computers and the internet, access to............................   225
Department administration, separate appropriation for............   241
Disabled, Federal share of excess costs to educate...............   245
Discretionary budget request and spending caps...................   217
Distance learning................................................   251
    FIPSE........................................................   252
Education:
    A life long process..........................................   220
    Adult........................................................   227
    Bilingual....................................................   261
    Children, other program funds for............................   262
    Early childhood, Brain development and.......................   219
    Federal:
        Funding..................................................   261
        Programs.................................................   231
        Role in..................................................   235
    Fiscal resources needed for..................................   220
    Good news about..............................................   220
    Immigrant, program--flat budget..............................   262
    Innovative, strategies state grants program..................   249
    Integrating, and health distance learning....................   218
    Parenting, brain development in early childhood..............   253
    Postsecondary, expanding opportunities for...................   230
    Professional development--bilingual and Indian...............   227
ESEA reauthorization...........................................220, 237
    Bilingual education proposals................................   262
    Consolidation proposal.......................................   227
    Professional development and teacher mentoring...............   254
    Program consolidation proposal...............................   249
    Strengthening accountability.................................   226
Fetal alcohol syndrome...........................................   219
      And special education......................................   218
Individuals With Disabilities Education Act......................   232
Initiative:
    Authorization of class size reduction........................   235
    Class size reduction.........................................   226
    Drug and violence prevention coordinator.....................   227
    Gear up......................................................   225
        Compared to college completion challenge grants..........   250
Matching requirement:
    Class size reduction funds...................................   248
    Exemption provision..........................................   249
Mentoring:
    Programs for new teachers..................................243, 244
    Provisions, ESEA reauthorization teacher.....................   244
    Reading programs.............................................   244
National writing project.........................................   239
Pell grants, fifth year..........................................   261
Programs:
    After-school and summer school...............................   226
    Gear up and talent search....................................   240
    Teacher mentoring............................................   254
    Requests, elementary and secondary education.................   226
    Pros and cons of consolidating college preparation...........   250
Raising standards and goals 2000.................................   224
Reading improvement..............................................   225
Schools:
    Charter......................................................   247
    Class size reduction.........................................   235
        Allocation flexibility...................................   243
        Allocation problem initiative............................   253
    Construction:
        And class-size reduction.................................   228
        Incentives...............................................   227
    Needs in California..........................................   262
    Guns in......................................................   258
    Safety, improving............................................   230
    Safe and drug-free...........................................   227
    Other weapons in.............................................   258
Social promotion.................................................   260
Special education:
    Alaska pilot project.........................................   251
    Forward funding proposal.....................................   245
    Funds for....................................................   256
    Funding level................................................   231
    Impact of class size reduction on............................   232
    Grants to states budget request............................248, 255
    Responsibility for funding...................................   246
Star study.......................................................   235
Students:
    Better teaching for all......................................   229
    Loan defaults--study of few borrowers........................   261
Teacher:
    Diversity....................................................   254
    Training--national writing project...........................   237
    Training--PBS math/line program..............................   237
Title I:
    Allocations--use of biennial updated poverty data............   256
    Allocations--use of updated poverty data.....................   257
    Applying, ``Hold Harmless'' to other programs................   257
    Hold-harmless language.......................................   257
    Provisions...................................................   226
    Targeting, funds.............................................   256
Title VI program, request for zero funding for the...............   259
TRIO programs....................................................   239

                DEPARTMENT OF HEALTH AND HUMAN SERVICES

                     National Institutes of Health

Additional Committee questions...................................   180
Aging, biology of................................................   133
AIDS vaccine:
    And prevention research......................................   119
    Priority for intervention: The quest for an..................   168
Autoimmune:
    Diseases.....................................................   128
    Research.....................................................   203
Autoimmunity.....................................................   135
Bioengineering, computers and advanced instrumentation...........   156
Bioterrorism, responding to the threat of........................   121
Brain:
    Drugs and their long lasting effects on the..................   145
    Neuroimaging reveals, activity associated with language......   139
Budget:
    NCI, in 2004.................................................   200
    NEI..........................................................   202
    Professional judgment........................................   169
    Summary, fiscal year 2000....................................   100
Cam research centers.............................................   158
Cancer:
    Cervical:
        Mortality................................................   169
        Treatment................................................   178
    Improving, detection.........................................   106
    In minority populations......................................   174
    Minorities and...............................................   183
    Minority, research...........................................   180
    Prostate.....................................................   186
    Research plan................................................   173
    Oral, advances in understanding..............................   112
    Treatment and prevention, advances in........................   104
Central vivarium.................................................    99
Children's:
    Health.......................................................   131
    Mental disorders.............................................   143
Chronic illness--a complex challenge.............................   150
Clinical:
    Advances and their special relevance to the treatment and 
      prevention of disease......................................   113
    Center: minorities in clinical research......................   192
    Research..............................................118, 198, 206
    Trials, large................................................   158
Complementary and alternative medicine, application of scientific 
  study to.......................................................   158
Conjugated Hib vaccines: a continuing success story..............   120
Corneal disease..................................................   128
Dental:
    And craniofacial diseases and disorders, burden of...........   111
    Caries, immunization for.....................................   111
Diabetes.......................................................127, 205
    Research.....................................................   176
Discovery, 25 years of...........................................   146
Disease:
    And disability, reducing.....................................   134
    Immunologic, new approaches to...............................   121
    Research, benefits to other..................................   168
Epilepsy.......................................................117, 213
Essential safety and health improvements.........................    99
Evaluation set-aside.............................................   181
Exercise physiology and sports injuries..........................   137
Extramural construction..........................................   208
Face, what's in a................................................   110
Fetal alcohol syndrome...........................................   148
Gender:
    Differences..................................................   131
    Therapy centers..............................................   195
General clinical research centers................................   210
Genetic medicine.................................................   156
Genetics.........................................................   147
    Of medicine..................................................   165
Genome sequencing at the forefront...............................   152
Genomic sequencing...............................................   120
Glaucoma.........................................................   206
Global burden of illness spurs collaborations with who...........   141
Government Performance and Results Act (GPRA)...100, 146, 152, 155, 160
Health:
    Access to, services in rural areas...........................   175
    Consumers, information for...................................   163
    Disparities................................................137, 151
    Disparities and minorities...................................   127
    Domestic and global, reducing the burden of infectious 
      diseases...................................................   119
    Promotion and disease prevention research....................   151
Hearing impairment:
    Early identification of: early intervention results in better 
      language skills............................................   138
    Hereditary, discovering the genes underlying.................   138
HIV/AIDS in the United States....................................   119
Human:
    Face, identifying the building blocks of the.................   111
    Genetics research, progress in...............................   154
    Genome project...............................................   172
Individuals and society, implications for........................   153
Information dissemination........................................   159
Infrastructure development.......................................   115
Initial review groups, review and reorganization of..............   141
Initiatives:
    Fiscal year 1999.............................................   108
    New, for fiscal year 2000..................................126, 162
Jackson heart study..............................................   175
Look ahead.......................................................   123
    Back.........................................................   122
Low vision.......................................................   129
    Vision impairment............................................   204
Lymphoma.........................................................   193
    Research agenda..............................................   194
    Research workshop............................................   194
Macular Degeneration.............................................   203
    Age-related..................................................   204
Management improvements..........................................   104
Mark O. Hatfield Clinical Research Center........................    99
Master plan......................................................    98
Medical:.........................................................
    Informatics..................................................   164
    Literature: bedrock of NLM services..........................   165
    Research makes a difference in people's lives................   137
Mental illness, expanded clinical trials for.....................   142
Molecular genetic techniques.....................................   144
Myeloma, multiple research funding...............................   199
Myopia.........................................................128, 205
National:
    Center for Complementary and Alternative Medicine............   210
    Multipurpose research and training centers.................197, 207
    Reading panel progress report................................   177
Native Hawaiians, waste treatment management by..................   212
Neuroscience.....................................................   204
    Medication development.......................................   147
New efforts in 1999..............................................   107
NIAID malaria research,..........................................   120
NIDCR microbial genomics projects................................   112
NIH:
    Alzheimer's disease research at..............................   214
    Accountability...............................................   185
    Research priority setting....................................   182
NIMH:
    Genetics research at.........................................   142
    Research, objectives of......................................   141
OD, other activities.............................................   103
Office of:
    Behavioral and Social Sciences Research (OBSSR)..............   102
    Disease Prevention...........................................   102
    Research on Minority health and the NIH Minority Health 
      Initiative.................................................   101
    Research on Women's Health...................................   103
Olfactory receptors proteins have a dual function................   140
Osteoporosis.....................................................   136
Outreach.........................................................   149
Parkinson's:
    And other neurodegenerative disorders........................   117
    Disease....................................................188, 191
Patenting genes..................................................   172
Prevention.......................................................   148
    And Education................................................   110
    Research.....................................................   179
    Research, applying the principles of.........................   146
Priority for intervention:
    Better therapies.............................................   167
    International research.......................................   168
    Women and minorities.........................................   167
Program progress and accomplishments.............................   161
Public liaison, offices of.......................................   183
Quality of care and quality of life..............................   151
Renovations and system upgrades..................................   100
Repair and improvement program...................................   100
Research:
    Advances.....................................................   109
    Aging........................................................   198
    Alzheimer's disease and brain biology........................   132
    Areas, eight critical........................................   130
    Capacity.....................................................   157
    Challenges, new..............................................   125
    Collaboration on Telehealth..................................   213
    Discoveries..................................................   125
    Flexible institutional support for...........................   209
    Funding of, project grants...................................   180
    Grant supported..............................................   159
    Mission, role in the.........................................    98
    Structure, revitalization of.................................   141
    Training.....................................................   159
Retinal degenerations............................................   127
Retinitis pigmentosa.............................................   205
Rotavirus vaccine licensed.......................................   120
School violence, combating.......................................   142
Science education................................................   209
Sensorineural regeneration.......................................   139
Shared instrumentation...........................................   209
Special target audiences.........................................   164
Spinal cord injury...............................................   117
Stem cell research.............................................190, 196
    And Alzheimer's disease......................................   170
    And Parkinson's disease......................................   170
    Guidelines...................................................   171
    Opportunities in.............................................   171
Stroke...........................................................   118
Stuttering, persistent has a genetic etiology....................   139
Synchrotrons.....................................................   209
Technologies that drive clinical advances, important basic 
  discoveries create.............................................   114
Therapeutics:
    New era of...................................................   112
    Safety assessment of.........................................   130
Therapy, differential response to................................   105
Transmissible disease............................................   167
Treatment:
    Improvement, national........................................   145
    L-Carnitine..................................................   215
Unrelenting pandemic.............................................   166
Vaccine:
    Development..................................................   120
    Tuberculosis, research.......................................   121

                        Office of the Secretary

Additional Committee questions...................................    34
Administration on aging..........................................    62
America, making a healthier--and a safer--place to live..........     9
Appalachian laboratory for occupational safety and health........    87
Bioterrorism preparation.........................................    46
Budget:
    NIH..........................................................    16
    Request......................................................    13
Certified registered nurse anesthetists (CRNAs), physician 
  oversight of...................................................    92
Child welfare training--American Indian/Alaskan Natives..........    91
Childhood, right to a safe and healthy...........................    11
Children's health insurance (CHIP)...............................    38
Compliance, year 2000............................................    62
Contingency fund.................................................    59
Continuing activities............................................    45
Cost, administrative allocation..................................    60
Dietary guidelines...............................................    87
Emergency Medical Care for Children (EMSC).......................    92
Head Start.......................................................    61
Health:..........................................................
    Care Financing Administration (HCFA) year 2000 computer 
      compliance.................................................    67
    Quality, affordable, care for America's working families.....     8
    Research cuts................................................    75
    Resources and Services Administration (HRSA).................    40
HIV and minorities...............................................    41
Laboratory, new occupational safety and health...................    88
Management improvements and innovations..........................    13
Medicaid, Federal reimbursement..................................    50
Medical:
    Assistance percentage, Federal...............................    72
    Devices, procedures and drugs................................    68
Medicare:
    Managed care pullouts........................................    65
    Subvention demonstration.....................................    86
Moment is now....................................................    13
Native Hawaiian health care/HUI..................................    92
New activities...................................................    46
New millennium, standing at the crossroads of the................     6
Nurse anesthetists...............................................    64
Organ transplantation and allocation issues......................    51
Public health infrastructure.....................................    48
Retirement, promise of a with dignity for all Americans..........     7
Stem cells.......................................................    65
    Research.....................................................    14
TANF:
    Funds, slow spending of......................................    54
    Uses of, block grants........................................    57
Tobacco issues...................................................    49
Underage drinking................................................    87
User fees........................................................    35
    Rural health and.............................................    68
Waiver, section 1115.............................................    69
Y2K and rural health care........................................    86

                          DEPARTMENT OF LABOR

                        Office of the Secretary

Additional Committee questions...................................   286
Administrative costs--Workforce Investment Act...................   320
Alaska:..........................................................
    Projects.....................................................   304
    Calculation of unemployment rates in.........................   302
``Alaska works'' partnership.....................................   301
Amish youth, working conditions for..............................   285
Argus learning for living........................................   282
At-risk youth, assistance to.....................................   281
Child labor:
    International................................................   315
    Law violations...............................................   316
Computer compliant, year 2000....................................   303
Equal Pay Act....................................................   307
Ergonomics.......................................................   282
    Proposed, rule...............................................
        Costs and benefits.......................................   299
        Requirements.............................................   299
Fair pay.........................................................   317
Family and Medical Leave Act.....................................   305
Fiscal year 2000 budget proposals--closing the gaps..............   269
Focusing on those most in need...................................   280
GPRA compliance, questions regarding.............................   308
Grant funds, State spending of welfare-to-work...................   299
Homeless Veterans Reintegration Project..........................   283
Initiative, skills shortages.....................................   298
Injury and illness, reducing rates...............................   318
Job Corps......................................................295, 321
Labor's efforts to develop electronic reporting and a publicly 
  accessible database under the Labor-Management Reporting and 
  Disclosure Act.................................................   286
National Occupational Information Coordinating Committee.........   299
Parenting education..............................................   301
Programs:
    Effectiveness of ergonomics and safety and health............   292
    H-2A Sheepherder.............................................   322
    New job training.............................................   297
    Senior Community Service Employment..........................   322
    Worker protection............................................   293
Regulation, health care--DOL's patients' rights..................   319
Repeated violations, definition of...............................   318
Rulemaking:
    Initiatives, requirements of major...........................   291
    Process for ergonomics.......................................   298
Skilled and unskilled workers, gaps between still exist..........   269
Steelworkers:
    Options for assisting displaced..............................   284
    Unemployed...................................................   284
Universal re-employment..........................................   280
Wage determination:
    Performance goals............................................   289
    Process, efforts to reengineer the Davis-Bacon...............   288
    Process, reengineering.......................................   290
Welfare for work, women leaving..................................   283
Welfare to work..................................................   318
    Status of....................................................   279
Workers:
    Addressing, problems strategically...........................   268
    Disabled.....................................................   317
    Families, helping manage change..............................   268

                                   - 
