[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
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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
__________
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congress/senate
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COMMITTEE ON APPROPRIATIONS
TED STEVENS, Alaska, Chairman
THAD COCHRAN, Mississippi ROBERT C. BYRD, West Virginia
ARLEN SPECTER, Pennsylvania DANIEL K. INOUYE, Hawaii
PETE V. DOMENICI, New Mexico ERNEST F. HOLLINGS, South Carolina
CHRISTOPHER S. BOND, Missouri PATRICK J. LEAHY, Vermont
SLADE GORTON, Washington 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
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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
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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
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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\
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\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.
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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:
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1999 2000 2001 2002 2003 2004
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Food Stamps............................................... $226 $230 $235 $240 $250 $255
Medicaid.................................................. 295 305 325 345 375 405
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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.
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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.
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\1\ For further information contact Chuck Ludlam, Vice President
for Government Relations or Brett Karcher, Government Relations
Assistant 202-857-0244.
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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).
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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.
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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.
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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.
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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\
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\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.
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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.
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\10\ AUTM Licensing Survey, fiscal year 1997, Association of
University Technology Manager, Inc. at 1.
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--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.
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\11\ AUTM Licensing Survey, fiscal year 1997, Association of
University Technology Manager, Inc. at 50.
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--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.
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\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\
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\13\ AUTM Licensing Survey, fiscal year 1997, Association of
University Technology Manager, Inc. at 1.
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--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\
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\14\ AUTM Licensing Survey, fiscal year 1997, Association of
University Technology Manager, Inc. at 2.
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--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.
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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
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\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\
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\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.
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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).
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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.
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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
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\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)).
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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).
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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.
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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.
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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.
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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.
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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\
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\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.
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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.
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\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.
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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.
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\1\ Alaska, Arizona, Arkansas, California, Colorado, Louisiana,
Maryland, Minnesota, Missouri, Nebraska, New York, Oklahoma, Rhode
Island, South Carolina, and Utah.
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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.
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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.
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\3\ Delaware, the District of Columbia, Illinois, Maryland,
Michigan, Nevada, New Hampshire, Oklahoma, South Carolina, Texas,
Virginia, and Wisconsin.
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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.
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\4\ Alabama, Arizona, Florida, Georgia, Iowa, Minnesota, Missouri,
New York, North Carolina, Ohio, and Oregon.
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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.
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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.
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\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.
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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.
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\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.
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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\
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\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.
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--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
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