- DEPARTMENTS OF LABOR, HEALTH AND HUMAN SERVICES, AND EDUCATION, AND RELATED AGENCIES APPROPRIATIONS FOR FISCAL YEAR 2009

[Senate Hearing 110-]
[From the U.S. Government Publishing Office]

DEPARTMENTS OF LABOR, HEALTH AND HUMAN SERVICES, AND EDUCATION, AND
RELATED AGENCIES APPROPRIATIONS FOR FISCAL YEAR 2009

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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:]

Prepared Statement of Abbey Curran, Miss Iowa USA

Mr. Chairman and members of the committee: I am proud and honored
to be here today, representing the hundreds of thousands of Americans
who deal each day with the special needs and challenges of cerebral
palsy. I am testifying on behalf of ``Reaching For The Stars. A
Foundation of Hope for Children with Cerebral Palsy'' (CP)--a national
nonprofit pediatric cerebral palsy foundation I have become proud to be
affiliated with over the last several months in the pursuit of
advocating for national cerebral palsy research funding.
I am humbled to address you today as this Committee has been
witness to so much of our country's history. I am only a small part of
that history, but, like all of you, I am here to make a difference.
Today, I would like to ask you to support $10 million in funding for
national Cerebral Palsy surveillance and epidemiological research by
the Centers for Disease Control and Prevention (CDC).
I am a daughter, a child, a friend, a successful student, but most
importantly, a woman who has sought to overcome the struggles that
cerebral palsy has presented to me in my own life, and as a woman who
has worked hard to achieve her dreams, no matter what obstacles may
have occurred because of my cerebral palsy. I am only one person, but I
have been given a great responsibility and opportunity through my CP to
speak up for the important research that can change the lives and the
future of the hundreds of thousands of children with cerebral palsy
right now--those who will be diagnosed with CP right now as we speak
and the increasing number of those children who will be diagnosed
tomorrow based on recent CDC reports pointing to an increasing CP
prevalence rate.
I am the current reigning Miss Iowa USA 2008. To some, this
achievement may be no more special than any other achievement, but to
me, this title affirms the fact that cerebral palsy does not define me.
I am Abbey Curran, Miss Iowa USA, a successful and happy person, not
Abbey Curran, disabled woman.
When I was born, my parents were unaware of the fact that I had CP
until I was two- years old since diagnostic tests nor medical
specialists in CP were not widely available. I was not born prematurely
or with any other complications at birth that would have led my parents
to suspect CP right away. Why do I have cerebral palsy? No one knows.
Unfortunately that is still the case today since the cause of CP is
unknown in over 80 percent of the cases.
I believe that anyone with CP can achieve their dreams, which is
why I feel so strongly about the need for national CP research and why
I am supporting ``Reaching For The Stars'' in their advocacy efforts
for CDC funding. As I have continued to learn more about cerebral palsy
and talk to more and more medical professionals, I realize that with
more research, the cause, new treatments and a cure for CP might be
discovered and that is extremely exciting for the future of all
Americans with CP.
My friends and family are always there to lend an arm to lean on
when I need assistance, and today, Mr. Chairman and members of the
committee, I would like to ask you to be the ``arm'' that we, the
people affected with CP can depend on. With only $10 million of funding
for national CP research and surveillance through the CDC you could
permanently change the lives and destiny of children with CP and their
families forever for the better.
I strive to be not only a model citizen for the great state of
Iowa, but also as a model example for those people living with cerebral
palsy--especially children growing up with the disorder to help them
know their dreams really can come true.
For my entire life, I have lived by the motto that I have to seize
the day, take every chance and every opportunity that I can because you
never know until you try. Accomplishment begins with these two simple
words: I'll try. Our life choices, not chance alone, determine our
destiny. Some people, like me, are more fortunate to have mild CP and
to be able to live normally for the most part, but there are thousands
of others whose CP affects them even more significantly--to the extent
that they are unable to care for themselves--exacting a staggering toll
on our medical and healthcare system. For the most part, these are
bright, capable human beings trapped in bodies that don't work like
yours. The decisions this committee makes will affect the course of my
life, the over 800,000 Americans living with CP and the lives of our
children and our children's children.
By funding the necessary national CP surveillance and
epidemiological research by the CDC, you can give hope to children with
cerebral palsy and their families. I ask you to please allocate $10
million to the CDC for CP research on behalf of the hundreds of
thousands of Americans who struggle each day with cerebral palsy. You
have the power to make a difference in our lives.
Thank you.
______

Prepared Statement of the American Academy of Family Physicians

As one of the largest national medical organizations, the American
Academy of Family Physicians (AAFP), representing family physicians,
residents, and medical students, urges the House Appropriations
Subcommittee on Labor, Health and Human Services, and Education to
increase funding for programs to support better health care for more
people in this country. As the subcommittee prepares the fiscal year
2009 spending bill, we strongly recommend that you restore funding for
health professions training programs; continue support for rural health
programs and increase our investment in the Agency for Healthcare
Research and Quality.

HEALTH RESOURCES AND SERVICES ADMINISTRATION

The Health Resources and Services Administration (HRSA) is charged
with improving access to health care services for people who are
uninsured, isolated or medically vulnerable. One of the most critical
aspects of this mission is ensuring a health care workforce which is
sufficient to meet the needs of patients and communities.

HRSA--HEALTH PROFESSIONS

For 40 years, the training programs authorized by Title VII of the
Public Health Services Act evolved to meet our Nation's health care
workforce needs. It is increasingly clear that our Nation has a
worsening shortage of primary care physicians. Earlier this year, in
testimony before the Senate HELP Committee, the Government
Accountability Office cited the ``growing recognition that greater use
of primary care services and less reliance on specialty services can
lead to better health outcomes at lower cost.'' \1\
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\1\ Steinwald, A. Primary Care Professionals: Recent Supply Trends
Projections, and Valuation of Services. Testimony Before the Committee
on Health Education, Labor, and Pensions, U.S. Senate, Government
Accountability Office GAO-08-472T February 2008.
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To improve how health care is delivered, we must modernize
workforce and education policies to ensure an adequate number of
primary care physicians trained to serve in a patient centered medical
home. The patient centered medical home will give patients access to
preventive care and coordination of the care needed to manage chronic
diseases as well as appropriate care for acute illness. The patient
centered medical home provides improved efficiency and better health
because it serves as a principal source of access and care. As a
result, duplication of tests and procedures and unnecessary emergency
department visits and hospitalizations can be avoided.
Section 747 of Title VII, the Primary Care Medicine and Dentistry
Cluster, is aimed at increasing the number of primary care physicians
(family physicians, general internists and pediatricians). Section 747
offers competitive grants for family medicine training programs in
medical schools and in residency programs. Section 747 is vital to
stimulate medical education, residency programs, as well as academic
and faculty development in primary care to prepare physicians to
support the patient centered medical home medical practice model.
The value of Title VII grants extends far beyond the medical
schools that receive them. The United States lags behind other
countries in its focus on primary care. However, the evidence shows
that countries with primary care-based health systems have population
health outcomes that are better than those of the United States at
lower costs.\2\ Health Professions Grants are one important tool to
help refocus the Nation's health system on primary care.
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\2\ Starfield B, et al. The effects of specialist supply on
populations' health: assessing the evidence. Health Affairs. 15 March
2005.
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The Health Professions programs have been targeted for elimination
in the President's budget despite of the fact that they exceeded
program goals in the following categories:
--In 2007, 57 percent of graduates and program completers of Titles
VII and VIII supported programs were underrepresented
minorities and/or from disadvantaged backgrounds. This exceeded
the target by 17 percent.
--The proportion of trainees in Titles VII and VIII supported
programs training in medically underserved communities was 43
percent in 2007 which exceeded the target of 41 percent.
--The percentage of health professionals supported by the program
entering practice in underserved areas was 35 percent in 2007.
This exceeded the target by 14 percent.\3\
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\3\ Department of Health and Human Services. Fiscal year 2009
Health Resources and Services Administration Justification of Estimates
for Appropriations Committee.
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The across-the-board cut reduced fiscal year 2008 section 747
funding below the House-passed level to under $48 million or $853,000
less than the fiscal year 2007 level of $48.9 million. It falls far
short of the $92 million provided for Primary Care Medicine and
Dentistry Training in fiscal year 2003. The Nation needs significant
additional support from section 747 because it is the only national
federally-funded program that provides resources for important
innovations necessary to increase the number of physicians who will
lead the primary care teams providing care in patient centered medical
homes.
AAFP recommends an increase in the fiscal year 2009 appropriation
bill for the Health Professions Training Programs authorized under
Title VII of the Public Health Services Act. We respectfully suggest
that the Committee provide at least $300 million for Title VII,
including $92 million for the section 747, the Primary Care Medicine
and Dentistry Cluster, which will restore this vital program to its
fiscal year 2003 level.

HRSA--NATIONAL HEALTH SERVICE CORPS

The National Health Service Corps (NHSC) offers scholarship and
loan repayment awards to primary care physicians, nurse practitioners,
dentists, mental and behavioral health professionals, physician
assistants, certified nurse-midwives, and dental hygienists serving in
underserved communities. The President has proposed a 2.4 percent
decrease in NHSC to $121 million for fiscal year 2009. The President's
budget also proposes to decrease the NHSC field allocation, which
provides funding for recruitment and retention administrative
functions, by $14 million (35 percent) to $26 million. The AAFP
supports the work of the NHSC toward the goal of full funding for the
training of the health workforce and zero disparities in health care.
AAFP opposes the proposed cut in NHSC funding and respectfully
requests that the Committee provide $150 million for NHSC in fiscal
year 2009.

HRSA--RURAL HEALTH

Americans in rural areas face more barriers to care than those in
urban and suburban areas. Rural residents also struggle with the higher
rates of illness associated with lower socioeconomic status.
Family physicians provide the majority of care for America's
underserved and rural populations.\4\ Despite efforts to meet
scarcities in rural areas, the shortage of primary care physicians
continues. Studies, whether they be based on the demand to hire
physicians by hospitals and physician groups or based on the number of
individuals per physician in a rural area, all indicate a need for
additional physicians in rural areas.
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\4\ Hing E, Burt CW. Characteristics of office-based physicians and
their practices: United States, 2003-04. Series 13, No. 164.
Hyattsville, MD: National Center for Health Statistics. 2007.
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HRSA's Office of Rural Health administers a number of programs to
improve health care services to the quarter of our population residing
in rural communities. Rural Health Policy Development and Outreach
Grants fund innovative programs to provide health care in rural areas.
State rural health offices, funded through the National Health Services
Corps budget, help States implement these programs so that rural
residents benefit as much as urban patients. The President's budget
proposes to cut the Rural Health Programs by 86 percent.
AAFP encourages the Subcommittee to oppose the President's request
to terminate these important programs and provide for their continued
funding the fiscal year 2009 appropriation bill. We respectfully
suggest that the Committee provide at least $175 million for HRSA Rural
Health.

AGENCY FOR HEALTHCARE RESEARCH AND QUALITY

The mission of the Agency for Healthcare Research and Quality
(AHRQ)--to improve the quality, safety, efficiency, and effectiveness
of health care for all Americans--closely mirrors AAFP's own mission.
AHRQ is a small agency with a huge responsibility for research to
support clinical decision-making, reduce costs, advance patient safety,
decrease medical errors and improve health care quality and access.

AHRQ--COMPARATIVE EFFECTIVENSS RESEARCH

One of the hallmarks of the patient centered medical home is
evidence-based medicine. Comparative effectiveness research, which
compares the impact of different options for treating a given medical
condition, is vital to quality care. Studies comparing various
treatments (e.g. competing drugs) or differing approaches (e.g. surgery
and drug therapy) can inform clinical decisions by analyzing not only
costs but the relative medical benefits and risks for particular
patient populations.
Comparative effectiveness research holds out the promise of
reducing health care costs while improving medical outcomes. AHRQ's
Effective Health Care Program is critical if we are to realize that
promise. Although the President's budget request proposed to hold this
important program at $30 million, the same as fiscal year 2008, we hope
that the Congress will increase our investment in comparative
effectiveness research.

AHRQ--HEALTH INFORMATION TECHNOLOGY

AHRQ plays a key role in the adoption of the health information
technology (HIT) which is a vital component of the patient centered
medical home. HIT is important to improving patient safety by reducing
medical errors and avoiding costly duplication of services. It also is
a vital to managing a patient's care when numerous providers are
required. AAFP recognizes that HIT, used effectively, has the potential
to help physicians make continuing improvements in the quality of care.
However, simply implementing current HIT tools will not bring about
these results. HIT adoption must go hand in hand with the
implementation of the patient centered medical home model.
It also is vital that AHRQ have the necessary resources to promote
standards for portability and interoperability which ensure that health
data is appropriately available and privacy protected. AAFP has called
for HIT implementation which recognizes that over 80 percent of health
care is delivered in doctors' offices.
Adoption of good information systems can lay the groundwork for
decision support and high quality health care. However, the communities
which would benefit the most from HIT face barriers to adoption.
Physicians treating vulnerable populations should be our highest
priority. Any payments to physicians to purchase HIT systems should go
to those serving in underserved areas in small or medium-sized
practices where the capital to purchase EHRs is hardest to secure.
These payments should not go through third-parties such as hospitals,
integrated health systems, or health plans, but directly to clinics and
practices based on financial need.
AAFP recommends an increase in the fiscal year 2009 appropriation
bill for the Agency for Healthcare Research and Quality (AHRQ). We
respectfully suggest that the Committee provide at least $360 million
for AHRQ, an increase of $26 million above the fiscal year 2008 level.
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Prepared Statement of the American Academy of Otolaryngology--Head and
Neck Surgery

Chairman Harkin, ranking member specter, and members of the
subcommittee, on behalf of the American Academy of Otolaryngology--Head
and Neck Surgery (AAO-HNS), I first want to thank you for your past
support of medical research and the critical efforts of the National
Institutes of Health (NIH), particularly the National Institute on
Deafness and Other Communications Disorders. The AAO-HNS represents
more than 13,000 physicians and allied health professionals who
specialize in the disorders of the ears, nose, throat, and related
structures of the head and neck. Our members are deeply committed to
providing the best care possible for our patients. For that reason, we
strongly support the NIH, which is the leading source of new
discoveries that improve the health of the American people.
The AAO-HNS is concerned, however, that the President's fiscal year
2009 budget request for NIH represents zero growth. For the past six
years, the NIH budget has failed to keep pace with inflation, severely
weakening NIH's ability to expand the frontier of medicine. The AAO-HNS
joins other organizations in the medical and research community in
urging you to support an increase of NIH's budget by $1.9 billion in
fiscal year 2009. This 6.6 percent increase would bring significant
change by halting the erosion of the Nation's medical research efforts,
as well as help develop cutting edge medicines, techniques, and
treatments to ensure the good health of millions of Americans.
The AAO-HNS is also concerned that the President's budget did not
include a funding request for the Early Hearing Detection and
Intervention (EHDI) program. This program, initiated by Congress and
administered within the U.S. Department of Health and Human Services,
has dramatically increased the number of infants being tested for
hearing loss. In 1998, prior to implementation of the program, 22
percent of babies were reported as having received a hearing screen.
Now, roughly 95 percent of all newborns are screened, and each year
there are thousands of infants with hearing loss and their families who
benefit from early identification.
It is now time to focus upon the next goal of the program: to
improve the outcomes of infants found to have hearing loss, by helping
them enroll in early intervention programs. Currently, just over half
of those infants diagnosed with hearing loss are enrolled in such
programs by 6 months of age. Thus, continued federal funding is
necessary to help ensure that all states and U.S. territories are given
the opportunity to successfully implement comprehensive EHDI programs
that will help improve the overall quality of life for deaf and hard-
of-hearing children. The AAO-HNS strongly urges the committee to
provide, at a minimum, an inflationary increase for this program above
the appropriated level in fiscal year 2008.
On behalf of my fellow otolaryngologist-head and neck surgeons
throughout America, I thank you for your attention to these important
issues and your continued efforts to improve healthcare.
______

Prepared Statement of the American Association for Cancer Research

EXECUTIVE SUMMARY

The American Association for Cancer Research (AACR) would like to
thank members for their support of National Institutes of Health (NIH)
and National Cancer Institute (NCI) research on the biology, treatment
and prevention of the more than 200 diseases called cancer. The AACR,
with more than 26,000 members worldwide, represents and supports
scientists by publishing respected, peer-reviewed scientific journals,
hosting international scientific conferences, and awarding millions of
dollars in research grants. Together, we have made great strides in the
war on cancer, but much remains to be done. One in four deaths in
America this year will be caused by cancer. Cancer-related deaths will
increase dramatically as the baby boom generation ages, and we must be
prepared to prevent, treat, and manage the impending wave of new
cancers.
Cancer is no longer a death sentence thanks to decades of research
and development made possible by strong commitments from Congress and
the American people, but now that commitment is wavering. After
expanding capacity during the NIH budget doubling, researchers at
hospitals and universities across the country now face shrinking
budgets. Promising young researchers, unable to secure grants, turn to
other careers. This disruption of the research pipeline will slow the
development of new treatments and set back America's biomedical
leadership for decades to come.
We are at the vanguard of a revolution in healthcare, where
personalized treatment will improve health, reduce harmful side
effects, and lower costs. We have the opportunity to build upon our
previous investments and accelerate the research process. Now is the
time to face the nation's growing healthcare needs, reaffirm our role
as world leaders in science, and renew our commitment to the research
and development that brings hope to millions of suffering Americans.
The AACR urges the U.S. Senate to support the following appropriations
funding levels for cancer research in fiscal year 2009:
--$32.1 billion for the National Institutes of Health, a 10.24
percent increase over fiscal year 2008.
--At least $5.3 billion for the National Cancer Institute (the NCI
Professional Judgment budget required to maintain current
services), a 9.5 percent increase over fiscal year 2008.
The American Association for Cancer Research (AACR) recognizes and
expresses its thanks to the United States Congress for its longstanding
support and commitment to funding cancer research. The completion of
the five-year doubling of the budget of the National Institutes of
Health (NIH) in 2003 was a stunning accomplishment that is already
showing impressive returns and benefits to patients with cancer.
Recently, however, budgets for cancer research have declined; this
commitment appears to be wavering. Budget doubling enabled a
significant expansion of infrastructure and scientific opportunities.
Budget cuts prevent us from capitalizing on them.
Unquestionably, the Nation's investment in cancer research is
having a remarkable impact. Cancer death rates have been declining for
over a decade, and the total number of annual cancer deaths declined in
2003 and 2004. This progress occurred in spite of an aging population
and the fact that more than three-quarters of all cancers are diagnosed
in individuals aged 55 and older. Yet this good news will not continue
without sustained and substantial Federal funding for critical cancer
research priorities. Indeed, cancer deaths are again on the rise as the
population ages. The American Association for Cancer Research joins the
95 Senators who voted in favor of the Specter/Harkin budget amendment
in urging the United States Senate to support the following
appropriations funding levels for cancer research in fiscal year 2009:
--$32.1 billion for the National Institutes of Health, a 10.24
percent increase over fiscal year 2008.
--At least $5.3 billion for the National Cancer Institute (the NCI
Professional Judgment budget required to maintain current
services), a 9.5 percent increase over fiscal year 2008.

AACR: FOSTERING A CENTURY OF RESEARCH PROGRESS

The American Association for Cancer Research has been moving cancer
research forward since its founding 101 years ago in 1907. The AACR and
its more than 26,000 members worldwide strive tirelessly to carry out
its important mission to prevent and cure cancer through research,
education, and communication. It does so by:
--fostering research in cancer and related biomedical science;
--accelerating the dissemination of new research findings among
scientists and others dedicated to the conquest of cancer;
--promoting science education and training; and
--advancing the understanding of cancer etiology, prevention,
diagnosis, and treatment throughout the world.

FACING AN IMPENDING CANCER ``TSUNAMI''

Over the past century, enormous progress has been made toward the
conquest of the nation's second most lethal disease (after heart
disease). Thanks to discoveries and developments in prevention, early
detection, and more effective treatments, many of the more than 200
diseases called cancer have been cured or converted into manageable
chronic conditions while preserving quality of life. The 5-year
survival rate for all cancers has improved over the past 30 years to
more than 65 percent. The completion of the doubling of the NIH budget
in 2003 is bearing fruit as many new and promising discoveries are
unearthed and their potential realized. However, there is much left to
be done, especially for the most lethal and rarer forms of the disease.
We recognize that the underlying causes of the disease and its
incidence have not been significantly altered. The fact remains that
men have a 1 in 2 lifetime risk of developing cancer, while women have
a 1 in 3 lifetime risk. The leading cancer sites in men are the
prostate, lung and bronchus, and colon and rectum. For women, the
leading cancer sites are breast, lung and bronchus, and colon and
rectum. And cancer still accounts for 1 in 4 deaths, with more than
565,650 people expected to die from their cancer in 2006. Age is a
major risk factor--this Nation faces a virtual ``cancer tsunami'' as
the baby boomer generation reaches age 65 in 2011. A renewed commitment
to progress in cancer research through leadership and resources will be
essential to dodge this cancer crisis.

FEDERAL INVESTMENT FOR LOCAL BENEFIT

Nearly 80 percent of the NCI budget is awarded to scientists who
work at local hospitals and universities throughout the country. More
than 5,400 research grants are funded at more than 150 cancer centers
and specialized research facilities located in 49 states. Over half the
states receive more than $15 million in grants and contracts to
institutions located within their borders. Many AACR member scientists
are engaged in this rewarding work. But too many of them have had their
long-term research jeopardized by grant reductions caused by the flat
and declining overall funding for the NCI since 2003. The AACR
recommends, at a minimum, a 9.5 percent increase in funding for the
National Cancer Institute to maintain its current services, supports a
10.24 percent increase to enable the National Cancer Institute to
expand its work on focused research questions.

UNDERSTANDING THE CAUSES AND MECHANISMS OF CANCER

Basic research into the causes and mechanisms of cancer is at the
heart of what the NCI and many of AACR's member scientists do. Basic
research is the engine that drives scientific progress. The outcomes
from this fundamental basic research--including laboratory and animal
research in addition to population studies and the deployment of state-
of-the-art technologies--will inform and drive the cancer research
enterprise in ways and directions that will lead to unparalleled
progress in the search for cures.

ACCELERATING PROGRESS IN CANCER PREVENTION

Preventing cancer is far more cost-effective and desirable than
treating it. The NCI uses multidisciplinary teams and a systems biology
approach to identify early events and how to modify them. More than
half of all cancers are related to modifiable behavioral factors,
including tobacco use, diet, physical inactivity, sun exposure, and
failure to get cancer screenings. The NCI supports research to
understand how people perceive risk, make health-related decisions, and
maintain healthy behavior. Prevention is the keystone to success in the
battle against cancer.

DEVELOPING EFFECTIVE AND EFFICIENT TREATMENTS

The future of cancer care is all about developing individualized
therapies tailored to the specific characteristics of a patient's
cancer. Noteworthy recent advances in this area have included the
development of oral versions of medicines that were formerly only
available by injection, thus improving patients' quality of life; and
the discovery of intraperitoneal (IP) chemotherapy--delivering drugs
directly to the abdominal cavity--that can add more than a year to
survival for some women with ovarian cancer.

OVERCOMING CANCER HEALTH DISPARITIES

Some minority and underserved population groups suffer
disproportionately from cancer. Solving this issue will contribute
significantly to reducing the cancer burden. Successful achievements in
this important area include the development and dissemination of the
patient navigator program that assists patients and caregivers to
access and chart a course through the healthcare system, and the NCI
Cancer Information Services Partnership Program that provides
information and education about cancer in lay language to the medically
underserved through community organizations.

AACR'S INITIATIVES AUGMENT SUPPORT FOR THE NCI

The NCI is not working alone or in isolation in any of these key
areas. NCI research scientists reach out to other organizations to
further their work. The AACR is engaged in scores of initiatives that
strengthen, support, and facilitate the work of the NCI, including:
--sponsoring the largest meeting of cancer researchers in the world,
with more than 17,000 scientists and 6,000 abstracts featuring
the latest scientific advances;
--publishing more than 3,400 original research articles each year in
six prestigious peer-reviewed scientific journals, including
Cancer Research;
--sponsoring the annual International Conference on Frontiers of
Cancer Prevention Research, the largest such prevention meeting
of its kind in the world;
--raising and distributing more than $5 million in awards and
research grants.

TRAINING AND CAREER DEVELOPMENT FOR THE NEXT GENERATION OF RESEARCHERS

Of critical importance to the viability of the long-term cancer
research enterprise is supporting, fostering, and mentoring the next
generation of investigators. The NCI devotes approximately four percent
of its budget to multiple strategies to training and career
development, including sponsored traineeships, a Medical Scientist
Training Program, special set-aside grant programs and bridge grants
for early career cancer investigators. Increased funding for these
foundational opportunities is essential to retain the scientific
workforce that is needed to continue the fight against cancer.

INCREASE RESEARCH FUNDING NOW

Remarkable progress is being made in cancer research, but much more
remains to be done. Cancer costs the nation more than $219 billion in
direct medical costs and lost productivity due to illness and premature
death. Respected University of Chicago economists Kevin Murphy and
Robert Topel have estimated that even a modest one percent reduction in
mortality from cancer would be worth nearly $500 billion in social
value. Investments in cancer research have huge potential returns.
Thanks to successful past investments, promising research opportunities
abound and must not be lost. To maintain our research momentum, the
American Association for Cancer Research (AACR) urges the United States
Senate to support the following appropriations funding levels for
cancer research in fiscal year 2009:
--$32.1 billion for the National Institutes of Health, a 10.24
percent increase over fiscal year 2008.
--At least $5.3 billion for the National Cancer Institute (the NCI
Professional Judgment budget required to maintain current
services), a 9.5 percent increase over fiscal year 2008.
______

Prepared Statement of the American Association for Geriatric Psychiatry

The American Association for Geriatric Psychiatry (AAGP)
appreciates this opportunity to present its recommendations on issues
related to fiscal year 2009 appropriations for mental health research
and services. AAGP is a professional membership organization dedicated
to promoting the mental health and well being of older Americans and
improving the care of those with late-life mental disorders. AAGP's
membership consists of approximately 2,000 geriatric psychiatrists as
well as other health professionals who focus on the mental health
problems faced by senior citizens.
AAGP appreciates the work this subcommittee has done in recent
years in support of funding for research and services in the area of
mental health and aging through the National Institutes of Health (NIH)
and the Substance Abuse and Mental Health Services Administration
(SAMHSA). Although we generally agree with others in the mental health
community about the importance of sustained and adequate Federal
funding for mental health research and treatment, AAGP brings a unique
perspective to these issues because of the elderly patient population
served by our members.

DEMOGRAPHIC PROJECTIONS AND THE MENTAL DISORDERS OF AGING

With the baby boom generation nearing retirement, the number of
older Americans with mental disorders is certain to increase in the
future. By the year 2010, there will be approximately 40 million people
in the United States over the age of 65. Over 20 percent of those
people will experience mental health problems.
Current and projected economic costs of mental disorders alone are
staggering. It is estimated that total costs associated with the care
of patients with Alzheimer's disease is over $100 billion per year in
the United States. Psychiatric symptoms (including depression,
agitation, and psychotic symptoms) affect 30 to 40 percent of people
with Alzheimer's and are associated with increased hospitalization,
nursing home placement, and family burden. These psychiatric symptoms,
associated with Alzheimer's disease, can increase the cost of treating
these patients by more than 20 percent.
Depression is another example of a common problem among older
persons. Of the approximately 32 million Americans who have attained
age 65, about 5 million suffer from depression, resulting in increased
disability, general health care utilization, and increased risk of
suicide. Depression is associated with poorer health outcomes and
higher health care costs. Co-morbid depression with other medical
conditions affects a greater use and cost of medications as well as
increased use of health services (e.g., medical outpatient visits,
emergency visits, and hospitalizations). For example, individuals with
depression are admitted to the emergency room for hypertension,
arthritis, and ulcers at nearly twice the rate of those without
depression. Those individuals with depression are more likely to be
hospitalized for hypertension, arthritis, and ulcers than those without
depression. Those with depression experience almost twice the number of
medical visits for hypertension, arthritis and ulcers than those
without depression. Finally, the cost of prescriptions and number of
prescriptions for hypertension, arthritis, and ulcers were more than
twice than those without depression.
Older adults have the highest rate of suicide compared to any other
age group. Comprising only 13 percent of the U.S. population,
individuals age 65 and older account for 19 percent of all suicides.
The suicide rate for those 85 and older is twice the national average.
More than half of older persons who commit suicide visited their
primary care physician in the prior month--a truly stunning statistic.

THE CHALLENGE OF MEETING THE MENTAL HEALTH NEEDS OF THE AGING
POPULATION--PROPOSAL FOR IOM STUDY ON MENTAL HEALTH WORKFORCE NEEDS OF
OLDER AMERICANS

On April 14, 2008, the Institute of Medicine (IOM) of the National
Academy of Sciences released a study of the readiness of the nation's
healthcare workforce to meet the needs of its aging population. In
discussions with AAGP prior to the release of the study, IOM
recommended that, because the scope of this study would not provide for
in-depth consideration of the mental health workforce needed to meet
future needs of the elderly, a complementary study be undertaken to
consider specifically this vital area of concern. This complementary
study would focus on the mental health professional workforce that will
be needed to meet the demands of the aging population in this country.
IOM has advised AAGP that $1 million would be needed to undertake this
complementary mental health study.
In discussions with AAGP, the senior staff of IOM suggested the
following language for inclusion in the LaborHHS Appropriations bill:
The Committee provides $1,000,000 for a study by the Institute of
Medicine of the National Academy of Sciences to determine the multi-
disciplinary mental health workforce needed to serve older adults. The
initiation of this study should be not later than 60 days after the
date of enactment of this Act, whereby the Secretary of Health and
Human Services shall enter into a contract with the Institute of
Medicine to conduct a thorough analysis of the forces that shape the
mental health care workforce for older adults, including education,
training, modes of practice, and reimbursement.
AAGP strongly urges inclusion of this proposal for funding for an
IOM study on mental health workforce needs of older Americans in the
fiscal year 2009 Labor HHS Appropriations bill.

NATIONAL INSTITUTE OF MENTAL HEALTH

In his fiscal year 2009 budget, the President again proposed
decreased funding for the National Institutes of Health (NIH). This
decline in funding would have a devastating impact on the ability of
NIH to sustain the ongoing, multi-year research grants that have been
initiated in recent years.
AAGP would like to call to the subcommittee's attention the fact
that, even in the years in which funding was increased for NIH and
NIMH, these increases did not always translate into comparable
increases in funding that specifically address problems of older
adults. Data supplied to AAGP by NIMH indicates that while extramural
research grants by NIMH increased 59 percent during the five-year
period from fiscal year 1995 through fiscal year 2000 (from
$485,140,000 in fiscal year 1995 to $771,765,000 in fiscal year 2000),
NIMH grants for aging research increased at less than half that rate:
only 27.2 percent during the same period (from $46,989,000 to
$59,771,000).
Despite the fact that over the past 7 years Congress, through
Committee report language, has specifically urged NIMH to increase
research grant funding devoted to older adults, this has not occurred.
In fact, this Committee's report accompanying the appropriations bill
for fiscal year 2008, stated:
Older Adults.--The Committee urges the NIMH to place a stronger
emphasis on research on adults over age 65 to reflect the growth in
numbers of this population. The Committee requests that the Institute
provide data in the fiscal year 2009 congressional budget
justifications on the amount of NIMH funding directed toward geriatric
mental health research over the past 5 years.
The critical disparity between Federally funded research on mental
health and aging and the projected mental health needs of older adults
is continuing. If the mental health research budget for older adults is
not substantially increased immediately, progress to reduce mental
illness among the growing elderly population will be severely
compromised. While many different types of mental and behavioral
disorders occur in late life, they are not an inevitable part of the
aging process, and continued and expanded research holds the promise of
improving the mental health and quality of life for older Americans.

CENTER FOR MENTAL HEALTH SERVICES

It is also critical that there be adequate funding for the mental
health initiatives under the jurisdiction of the Center for Mental
Health Services (CMHS) within SAMHSA. While research is of critical
importance to a better future, the patients of today must also receive
appropriate treatment for their mental health problems. SAMHSA provides
funding to State and local mental health departments, which in turn
provide community-based mental health services to Americans of all
ages, without regard to the ability to pay. AAGP was pleased that the
final budgets for the last five years have included $5 million for
evidence-based mental health outreach and treatment to the elderly.
AAGP worked with members of this subcommittee and its House counterpart
on this initiative, which is a very important program for addressing
the mental health needs of the nation's senior citizens. However, AAGP
is extremely alarmed to see that this program was eliminated in
President Bush's fiscal year 2009 budget proposal. Restoring and
increasing this mental health outreach and treatment program must be a
top priority, as it is the only Federally funded services program
dedicated specifically to the mental health care of older adults.
The greatest challenge for the future of mental health care for
older Americans is to bridge the gap between scientific knowledge and
clinical practice in the community, and to translate research into
patient care. Adequate funding for this geriatric mental health
services initiative is essential to disseminate and implement evidence-
based practices in routine clinical settings across the States.
Consequently, we would urge that the $5 million for mental health
outreach and treatment for the elderly included in the CMHS budget for
fiscal year 2008 be increased to $20 million for fiscal year 2009. Of
that $20 million appropriation, AAGP believes that $10 million should
be allocated to a National Evidence-Based Practices Program, which will
disseminate and implement evidence-based mental health practices for
older persons in usual care settings in the community. This program
will provide the foundation for a longer-term national effort that will
have a direct effect on the well-being and mental health of older
Americans.

HEALTH RESOURCES AND SERVICES ADMINISTRATION

Despite growing evidence of the need for more geriatric specialists
to care for the nation's elderly population, a critical shortage
persists. AAGP appreciates the work of this Subcommittee in providing
for the restoration of funding for the geriatric health professions
programs under Title VII of the Public Health Service Act, which was
eliminated for fiscal year 2006. The restoration of this program has
prevented a devastating impact on physician workforce development over
the next decade, with would have dangerous consequences for the growing
population of older adults who will need access to appropriate
specialized care. The Administration has again proposed eliminating
most Title VII programs, including geriatrics. We urge the Subcommittee
to fund them at the final fiscal year 2008 level. The geriatric health
professions program supports three important initiatives. The Geriatric
Faculty Fellowship trains faculty in geriatric medicine, dentistry, and
psychiatry. The Geriatric Academic Career Award program encourages
newly trained geriatric specialists to move into academic medicine. The
Geriatric Education Center (GEC) program provides grants to support
collaborative arrangements that provide training in the diagnosis,
treatment, and prevention of disease.

CONCLUSION

Based on AAGP's assessment of the current need and future
challenges of late life mental disorders, we submit the following
fiscal year 2009 funding recommendations:
1. An Institute of Medicine study on the future mental health
workforce needs for older adults should be funded at $1 million, in
accordance with the recommendation of the IOM.
2. The current rate of funding for aging grants at NIMH and CMHS is
inadequate and should be increased to at least three times their
current funding levels. In addition, the substantial projected increase
in mental disorders in our aging population should be reflected in the
budget process in terms of dollar amount of grants and absolute number
of new grants.
3. To help the country's elderly access necessary mental health
care, previous years' funding of $5 million for evidence-based mental
health outreach and treatment for the elderly within CMHS must be
increased to $20 million.
4. Funding for the geriatric health professions program under Title
VII of the Public Health Service Act should be continued at no less
than fiscal year 2008 levels.
AAGP looks forward to working with the members of this subcommittee
and others in Congress to establish geriatric mental health research
and services as a priority at appropriate agencies within the
Department of Health and Human Services.
______

Prepared Statement of the American Association of Immunologists

The American Association of Immunologists (``AAI''), a not-for-
profit professional society representing more than 6,500 of the world's
leading experts on the immune system, respectfully submits this
testimony regarding fiscal year 2009 appropriations for the National
Institutes of Health (``NIH''). The vast majority of AAI's members--
research scientists and physicians who work in academia, government,
and industry--depend on NIH funding to advance their own work and the
broader field of immunology.\1\ With approximately 83 percent of NIH's
$29.2 billion budget awarded to scientists throughout the United States
and around the world, NIH funding advances both immunological/
biomedical research and the regional and national economies.\2\
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\1\ The majority of AAI members receive grants from the National
Institute of Allergy and Infectious Diseases (NIAID), the National
Cancer Institute (NCI), and/or the National Institute on Aging (NIA).
\2\ NIH funding supports more than 300,000 scientists/staff at more
than 3,000 universities/medical schools/research institutions in every
state and internationally. Fiscal year 2009 Director's Budget Request
Statement: fiscal year 2009 Budget Request, Witness appearing before
the House Subcommittee on Labor-HHS-Education Appropriations, Elias A.
Zerhouni, M.D., Director, National Institutes of Health (3/5/08).
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WHY IMMUNOLOGY?

HIV/AIDS, Cancer, Influenza, Malaria, Diabetes, Rheumatoid
arthritis, Smallpox, Organ Transplants, and Asthma.
Treatments and cures for these, and for many more infectious and
chronic diseases, depend on our understanding of the immune system. And
yet, the study of immunology is relatively new. Although scientists
developed the first vaccine (against smallpox) in 1798, most of our
basic understanding of the immune system has developed in the past 30-
40 years, and new discoveries are being made every day.
What advances have been made! Vaccines protect us from childhood
diseases that historically caused millions of childhood deaths and
contributed to lower life expectancy.\3\ Advances in understanding the
immune system enable us to better control environmental threats.
Progress in our urgent quest to understand the immune response to
natural infectious organisms that can be used as agents of bioterrorism
(including plague, smallpox, and anthrax) or that threaten to cause the
next pandemic (including avian influenza) may soon protect us against
these dangerous pathogens. For all of these pressing needs and more, we
need basic research on the immune system if we are to discover ways to
prevent, treat, and cure disease.\4\
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\3\ Scientists have reported that vaccines for 7 of 12 routinely
recommended childhood diseases prevent 33,000 deaths annually and 14
million cases of disease [a], resulting in a savings of $10 billion in
direct health costs and a savings of $33 billion in disability and lost
productivity costs.'' Roush et al. ``Historical Comparisons of
Morbidity and Mortality for Vaccine-Preventable Diseases in the United
States.'' The Journal of the American Medical Association, Vol. 298,
No. 18, pp. 2155-2163 (2007).
\4\ The immune system works by recognizing and attacking ``foreign
invaders'' (e.g., bacteria and viruses) inside the body and by
controlling the growth of tumor cells. A healthy immune system can
protect its human or animal host from illness or disease either
entirely or partially (resulting in a less serious illness). It is also
responsible for the rejection responses observed following
transplantation of organs or bone marrow. The immune system can
malfunction, allowing the body to attack itself instead of an invader
(resulting in an ``autoimmune'' disease, such as Type 1 diabetes,
multiple sclerosis, or rheumatoid arthritis).
---------------------------------------------------------------------------
Recent scientific discoveries: Blockbusters and hope Vaccines are
arguably the most successful immunotherapeutics that mankind has
produced. Effective in preventing and all but eliminating a wide range
of childhood and adult infectious diseases, their usefulness in cancer
and chronic infectious disease has not been fully realized. That may
all change due to the discovery of Toll-like Receptors (TLR), which
recognize products (like DNA, lipids, lipoproteins, and flagella)
present in pathogens (such as bacteria, viruses, and parasites) and
mount an intense immune response; this could lead to the creation of a
whole new generation of vaccines.
A highly effective vaccine against cervical cancer caused by Human
Papillomavirus (HPV), which infects over 8 percent of women aged 15-50,
was recently approved by the Food and Drug Administration. The new
vaccine (``Gardasil'') is efficacious in preventing primary infection
and therefore in reducing the incidence of cervical cancer. More
recently, a TLR immune adjuvant called MPL is being used as an adjuvant
in a newer HPV vaccine; results from early clinical trials indicate
that the adjuvant induces a more robust immune response in older adults
and a faster response in young adults than does Gardasil.
In 2007, B lymphocyte-depleting therapies were shown to be a
revolutionary advance in the treatment of autoimmune diseases. In
Rheumatoid Arthritis (RA), the anti-CD20 monoclonal antibody,
rituximab, was shown to induce clinical remissions in previously
unresponsive patients, to improve signs and symptoms, and to prevent
structural damage. Rituximab therapy is now being used with impressive
success in the treatment of many other autoimmune diseases, such as
systemic lupus erythematosus (lupus) and relapsing remitting multiple
sclerosis (MS) (controlling inflammation and further brain damage
within one month).
Other potentially important therapeutic avenues needing further
support include the development of additional therapeutic monoclonal
antibodies, increasingly recognized as the most promising mode of
treatment for a myriad of human diseases, and the use of pre-transplant
conditioning and administration of bone marrow to eliminate the need
for immunosuppression following organ transplantation.

NIH BUDGET CONTINUES TO ERODE

AAI greatly appreciates this subcommittee's leadership in the
successful effort to double the NIH budget. With this funding,
biomedical scientists grew the research enterprise and trained new
young investigators, preparing them to become tomorrow's teachers and
leaders. Although the NIH budget has grown since the doubling ended in
fiscal year 2003 (from $27.067 billion to $29.2 billion in fiscal year
2008), sub-inflationary budget increases since fiscal year 2003 have
resulted in a loss of purchasing power of more than 13 percent. Last
year, AAI warned that such a loss in purchasing power was already
beginning to have a devastating effect; this year, AAI can testify to
the inordinate stress and life-altering consequences this has had on
many researchers whose work continues to be excellent but whose grants
simply cannot be funded when key NIH Institutes have already dropped
their RO1 paylines to as low as 10-14 percent, significantly below the
approximately 22 percent during the doubling period. In addition,
success rates [the percentage of reviewed Research Project Grant (RPG)
applications receiving funding computed on a fiscal year basis] have
dropped to 21 percent in fiscal year 2007, the lowest since 1970, and
to 19 percent in fiscal year 2008. With funding so low, many senior
investigators with outstanding, innovative ideas--many of whom support
(through their NIH grants) entire laboratories filled with younger
faculty and post-doctoral fellows--are not being funded on their first
renewal grant submission, forcing them to spend valuable time revising
and resubmitting their applications.
The President's fiscal year 2009 budget will exacerbate the above-
described situation by:
1. providing no inflationary increase (for the 4th year) for
direct, recurring costs in non-competing RPGs;
2. providing inadequate increases (1 percent) to already inadequate
stipends for pre- and post-doctoral fellows, whose work is critical to
established investigators and who will be the principal scientists of
tomorrow;
3. increasing the adverse repercussions on Americans' health and
the national economy: in addition to their terrible human toll, disease
and disability cost society trillions of dollars annually in medical
care, lost wages and benefits, and lost productivity; \5\ and
---------------------------------------------------------------------------
\5\ National health expenditures cost $3.28 trillion in 2006 and
are projected to be $4.1 trillion in 2016. See http://www.cms.hhs.gov/
NationalHealthExpendData/downloads/proj2006.pdf http://www.cms.hhs.gov/
NationalHealthExpendData/downloads/highlights.pdf
---------------------------------------------------------------------------
4. jeopardizing the future of the biomedical research enterprise:
our brightest young people will be deterred from pursuing biomedical
research careers if their chances of receiving an NIH grant, or of
sustaining a career as an NIH-funded scientist, do not improve. If we
do not act soon, the United States will lose more of its scientists, as
well as its preeminence in medical research and science, to nations
(including India, Singapore, and China) that are already investing
heavily in this essential economic sector.

AAI RECOMMENDS A 6.5 PERCENT BUDGET INCREASE FOR FISCAL YEAR 2009

AAI urges the subcommittee to increase the NIH budget by 6.5
percent ($1.9 billion) in fiscal year 2009, to $31.1 billion. This
increase, which is only 3 percent above the projected rate of
biomedical research inflation, would begin to restore both the loss in
purchasing power that has occurred since the NIH budget doubling ended
in fiscal year 2003 \6\ and the confidence of young scientists that a
career in biomedical research is possible.
---------------------------------------------------------------------------
\6\ According to the U.S. Department of Commerce's Biomedical
Research and Development Price Index (``BRDPI''), the projected rate of
biomedical research inflation for fiscal year 2009 is 3.5 percent. NIH
funding increases since fiscal year 2003 have all been below the BRDPI.
NIH memo dated February 4, 2008: ``Biomedical Research and Development
Price Index: Fiscal Year 2007 Update and Projections for Fiscal year
2008-2013'' http://officeofbudget.od.nih.gov/UI/2008/
BRDPI_Proj_2008_final.pdf
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OTHER KEY ISSUES: INFLUENZA AND BIOTERRORISM

Seasonal influenza leads to more than 200,000 hospitalizations and
about 36,000 deaths nationwide in an average year. Moreover, an
influenza pandemic as serious as the one that occurred in 1918 could
result in the illness of almost 90 million Americans and the death of
more than 2 million, at a projected cost of $683 billion.\7\ AAI
strongly believes that the best preparation for a pandemic is to focus
on basic research to combat seasonal flu, including building capacity,
pursuing new production methods (cell based), and seeking optimized flu
vaccines and delivery methods. For bioterrorism, the focus should also
be on basic research, including identifying new and potentially
modified pathogens, understanding the immune response, and developing
tools (including new and more potent vaccines) to protect against
pathogens.
---------------------------------------------------------------------------
\7\ A report issued by Trust for America's Health (``Pandemic Flu
and the Potential for U.S. Economic Recession'') predicts that a severe
pandemic flu outbreak could result in the second worst recession in the
United States since World War II, resulting in a drop in the U.S. Gross
Domestic Product of over 5.5 percent.
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OTHER KEY ISSUES: THE NIH ``COMMON FUND''

The NIH Reform Act of 2006 established within NIH a ``Common Fund''
(``CF'') to support trans-NIH initiatives. The President's budget would
increase the CF by $38 million, or 7.66 percent. While there is value
to interdisciplinary research, AAI believes that CF funds should not
grow faster than the NIH budget, and that all CF awards and grants must
be awarded through a transparent and rigorous peer review process.

OTHER KEY ISSUES: THE NIH PUBLIC ACCESS POLICY

AAI respectfully requests that the subcommittee require that NIH
report on the cost of implementing the NIH Public Access Policy
(``Policy''). To the best of AAI's knowledge, NIH has never reported
the cost of the former voluntary Policy or the projected cost of the
new mandatory Policy, and there is no requirement in law that NIH ever
do so. AAI therefore requests that the subcommittee require NIH to
publicly report by April 2009: (1) the total funds expended on
implementing the voluntary Policy (May 2, 2005-January 11, 2008); (2)
the cost anticipated for implementation of the mandatory Policy in
fiscal year 2009; and (3) how much of the cost anticipated for fiscal
year 2009 will be a one-time implementation cost, and how much will be
an annual cost. AAI has submitted proposed language to the
subcommittee's Chairman and Ranking Member for consideration (letter
from AAI to Chairman Harkin and Senator Specter, March 18, 2008).
AAI continues to believe that the Policy will duplicate, at great
cost to NIH and to taxpayers, publication services which are already
provided cost-effectively and well by the private sector. The private
sector, including not-for-profit scientific societies, already
publishes--and makes publicly available--thousands of scientific
journals that report cutting-edge research funded by both NIH and other
public and private entities. AAI urges that, rather than creating a new
government bureaucracy (a particular burden in this era of severe
budget constraints), NIH should partner with these publishers to
develop a plan that enhances public access while also addressing
publishers' key concerns, which include respecting copyright law and
ensuring journals' continued ability to provide quality, independent
peer review of NIH-funded research.

OTHER KEY ISSUES: PRESERVING HIGH QUALITY PEER REVIEW

NIH has recently conducted a ``Self-Study'' of its peer review
system, soliciting the views of a wide range of stakeholders in an
effort to improve what is already the world's best system. AAI
applauds, and has participated fully in, this important effort.
Nevertheless, AAI has some concerns that NIH has not adequately
considered the importance of transparent evaluation and urges the
subcommittee to ensure that NIH: (1) provides adequate time for
stakeholder review and input on all final recommendations; and (2)
conducts timely and transparent evaluation of all pilot projects and
permanent changes, with ample opportunity for public comment. Even as
NIH seeks to make needed improvements, it is essential that changes to
our extraordinary peer review system, already the envy of the world,
must first ``do no harm''.

OTHER KEY ISSUES: ENSURING THE INDEPENDENCE OF SCIENCE

Millions of lives--as well as the prudent use of taxpayer dollars--
depend on the willingness of government officials to accept the best,
most independent scientific advice available. AAI urges the
subcommittee to ensure that funds expended protect the ability of
scientists to provide independent scientific advice, whether through
government advisory panels, through the peer review process, or by
supporting the vitality of independent scientific journals that provide
expert peer review of taxpayer funded research.

OTHER KEY ISSUES: ENSURING NIH OPERATIONS AND OVERSIGHT

AAI urges the subcommittee to explore whether the President's
proposed sub-inflationary increase of $20 million (1.49 percent) for
Research, Management, and Services, which supports the management,
monitoring, and oversight of all research activities (including peer
review), is adequate to ensure NIH supervision of a portfolio of
increasing size and complexity, as well as to ensure that NIH funds are
properly spent.

CONCLUSION

AAI greatly appreciates this opportunity to submit testimony and
thanks the Chairman, Ranking Member, and subcommittee for their strong
support for biomedical research, the NIH, and the scientists who devote
their lives to preventing, treating, and curing disease.
______

Prepared Statement of the American Association of Museums

Chairman Harkin, ranking member Spector, and distinguished members
of the subcommittee, the American Association of Museums appreciates
the opportunity to submit testimony on the fiscal year 2009 budget for
the museum program at the Institute of Museum and Library Services
(IMLS).
The American Association of Museums (AAM) is the only organization
representing the full scope of museums--art museums, history museums,
science centers, children's museums, zoos and aquariums, public gardens
and many specialty museums--along with professional staff and
volunteers who work for and with museums. AAM currently represents more
than 15,000 individual museum professionals and volunteers, 3,000
institutions and 300 corporate members. Our membership is as diverse as
the collections contained in the museums we represent.
We respectfully request your approval of $46.3 million for grants
to museums administered through the Office of Museum Services (OMS) at
the Institute of Museum and Library Services (IMLS) and the agency's
overall budget request of $500,000 for museum data collection.
Museums and libraries are the most trusted sources of online
information among adults of all ages, education levels, races and
ethnicities. According to a recent IMLS report, museums and libraries
rank higher in trustworthiness than all other information sources,
including government, commercial and private websites. This report
highlighted the vital role of museums in supplementing formal education
and providing informal learning opportunities.
There are more than 17,500 museums in America. As vibrant community
assets and sources of civic pride, museums perform an essential
function in the creation of America's social and cultural fabric.
However, unlike schools and libraries, most museums operate as
private, nonprofit organizations with nominal government funding.
According to AAM's most recent financial survey, nonprofit museums
receive approximately 24 percent of their budget from local, state and
federal funding.

PRESERVING OUR PAST

Museums preserve and present to the public the collections that
helped make America a great nation. The care of these objects is
critical to their preservation for future generations. Toward that end,
IMLS funded the Heritage Health Index, the first comprehensive survey
ever conducted of the condition and preservation needs of our nation's
collections, in museums, libraries, archives, historical societies and
scientific research organizations. The survey produced two startling
facts: These collections are visited more than 2.5 billion times a
year, yet 630 million artifacts, encompassing works of art,
photographs, historic objects, natural science specimens, books and
periodicals, are currently at risk.
One result of this survey was a multifaceted plan to manage,
protect, and preserve these valuable objects. ``Connecting to
Collections'' is an IMLS-supported initiative, through which grants
fund statewide planning on preserving a state's collections.
IMLS assists museums with efforts to examine, document, treat,
stabilize, and restore their collections through the consultation
services of the Conservation and Museum Assessment Programs and with
financial assistance through the Conservation Project Support program.
But the Conservation Project Support program's resources never meet the
demand. In fiscal year 2008 IMLS received 172 applications and made a
total of 65 grants (for a total of $4.9 million).
An example of a State anticipating these needs and of the
effectiveness of ``Connecting to Collections'' grants is the effort
underway in Rhode Island. A $40,000 grant to the Rhode Island Office of
Library and Information Services in 2008 enabled it to define and
inventory the universe of statewide heritage collections, institute an
online disaster planning program, train stakeholders in its use and
share this knowledge with state and local emergency management
agencies, first responders and heritage stakeholders. To date, 19
similar statewide grants have been awarded.
IMLS funds have enabled the Martin Art Gallery at Muhlenberg
College in Muhlenberg, Pennsylvania, to give more serious attention to
collections management. They are currently moving approximately 50
percent of the Tanner Collection (works on paper) to storage in a
climate-controlled storage area. In addition, a large 1868 painting is
slated for conservation, and there is an increase in awareness about
the responsibilities of holding collections in trust for the public.

EDUCATING THE PUBLIC

As State and local public education mandates have changed,
students' access to education in the arts, history and other subjects
has been reduced. Museums have helped fill the void with invaluable
learning experience for K-12 students. As school budgets have been cut,
especially for off-site field trips, many museums have aggressively
brought their institutions and collections directly to the students.

SUPPORTING RESEARCH

The United States needs a robust program of research in order to
understand the larger impact of museums nationwide. Important areas of
future research include:
--measuring the educational and social influence of museums at the
national level while building the capacity of institutions to
measure how they affect their communities,
--studying what skills are needed to be a successful 21st-century
museum professional, and what training is needed to nurture
leaders in the field,
--supporting the ongoing collection of core data about museums, such
as financial benchmarks, attendance patterns and long-term
social impacts, and
--examining areas of special interest to the museum field, such as
collections stewardship and the relationship between museums
and both formal and informal learning.

STRIVING FOR EXCELLENCE

Museums must consistently strive to improve if they are to retain
the public trust and fulfill their mission of education and public
service. IMLS has been integral to that ongoing effort, in numerous
ways. One of the most critical is its support of the Museum Assessment
Program (MAP), a program that brings fresh, experienced, outside eyes
to a museum's operations and collections management. MAP participants
come to understand their strengths and weaknesses, learning how to
improve overall operations and set institutional priorities. These
museum improvements directly benefit the public they serve.

CELEBRATING DIVERSITY

While IMLS funds a wide range of programs and efforts at a broad
range of institutions, two of the newest programs help ensure that
museums reflect our nation's diversity. AAM supports the continuation
of the Native American/Native Hawaiian Museum Services grants and
Museum Grants for African American History and Culture. These
institutions are among the newest specialized type of museums and must
be supported to ensure that the public has access to the broadest
interpretation and representation of the history and culture of our
Nation.

TRAINING MUSEUM LEADERS AND EDUCATORS

To further connect museums and their public to the future, IMLS has
led the way in supporting the 21st Century Museum Professionals
program, an initiative designed to empower future museum leaders to
face a field that is rapidly changing. Today, the demands of a museum
director are such that boards search for candidates who are strategic
thinkers, excellent communicators and talented fundraisers, as well as
having an entrepreneurial spirit and energy that will enable them to
bridge the worlds of commerce and scholarly pursuits. According to a
2006 AAM survey of museum finances, the average museum has a staff of
six full-time employees and four part-time employees, including
curators, educators, registrars, accountants and marketing and
development professionals, with many filling more than one role. Like
many other nonprofits, museums have also struggled to identify diverse
pools of qualified workers.
IMLS works to fill this void via the 21st Century Museum
Professionals program. In its first two years of existence, the program
has attracted 97 applicants for only 19 fundable spots. The agency's
fiscal year 2009 request would allow IMLS to fund approximately 20 more
applications in fiscal year 2009 than were funded in fiscal year 2007
or will be funded in fiscal year 2008. IMLS received far more quality
applications for this program than there are funds to grant. We urge
the subcommittee to consider increasing future investment in the
development of a diverse, talented and qualified workforce of museum
professionals.

BUILDING COMMUNITIES

Museums are iconic entities in their communities. Citizens take
pride in their local museums. Museum-focused programs supported by IMLS
strengthen these community ties while also serving a useful civic role,
the benefits of which may reach well beyond local boundaries.
A compelling example comes from St. Paul, where the Minnesota
Historical Society used a 2002 IMLS grant of $125,389 to initiate a
program designed to further integrate the Twin Cities' sizeable Somali
population into their new host culture. This program trained 15 Somali
women in the use of digital technology, resulting in a compelling film,
Two Homes, One Dream: The Somalis in Minnesota. For the film the women
did historical research; conducted oral history interviews with peers,
elders, educators and community leaders; and filmed events across the
Twin Cities. Some four years after its completion, Two Homes, One Dream
is still requested and featured in public screenings throughout the
region, as its themes of cultural identity and the immigrant experience
continue to resonate with a diverse group of Minnesotans.

CONCLUSION

We realize how difficult it is to prioritize how resources are
allocated among all the worthy programs that are within this
subcommittee's jurisdiction. Our appeal is that, in making these
important choices, you consider the vital contribution museums make in
communities nationwide. Investing in museums is investing in our
traditions, our culture, our heritage and in the American spirit of
creativity and independence. By way of evidence, we offer this story of
two Philadelphians for whom museums have been both an inspiration and a
lifeline (first reported in February 2008 in the Philadelphia
Inquirer):
Bill McLaughlin and Dick Hughes are World War II veterans. Both are
in their 80s. They attend the same church in Philadelphia, but were not
really close friends. When Bill's wife was losing her battle with
Alzheimer's, Dick thought it was his ``Christian duty'' to pull Bill
out of his despondency. They spent an afternoon at the Academy of
Natural Sciences in Philadelphia. They enjoyed it, for the intellectual
stimulation and for the way it diverted their attention from other
pressing matters. The following week, they visited the battleship New
Jersey. And they continued to visit Philadelphia-area museums and
historic sites for three years and a total of 203 museums. The result
was a handy guide they recently published, entitled Travels with Dick
and Bill, sales of which benefit their church. But more importantly,
these travels cultivated their love for museums, an appreciation of
their hometown and an enduring friendship that will undoubtedly last
the rest of their lives.
This is a poignant example of how museums bring us together, and of
how these public institutions served two men who had served their
country so nobly. With the continued support and leadership of an
increased investment of federal funding in museums, and by working with
our partners in the private sector, museums can continue to strive for
the highest standards in fulfilling their mission of educating the
public and preserving our heritage--and perhaps even more importantly,
in continuing to touch American lives like those of Bill McLaughlin and
Dick Hughes.
______

Prepared Statement of the American Association of Nurse Anesthetists

FISCAL YEAR 2009 APPROPRIATIONS REQUEST SUMMARY
----------------------------------------------------------------------------------------------------------------
AANA fiscal year 2009
Fiscal year 2008 actual Fiscal year 2009 budget request
----------------------------------------------------------------------------------------------------------------
HHS/HRSA/BHPr Title VIII Advanced Awaiting grant Grant allocations not $4,000,000 for nurse
Education Nursing, Nurse Anesthetist allocations--in fiscal specified. anesthesia education.
Education Reserve. year 2007 awards
amounted to approx.
$3,500,000
--------------------------------------------------------------------------
Total for Advanced Education $61,800,000 for $0 for Advanced $67,000,000 for
Nursing, from Title VIII Advanced Education Education Nursing. advanced education
Nursing nursing.
--------------------------------------------------------------------------
Title VIII HRSA BHPr Nursing $156,046,000 $109,853,000 $200,000,000
Education Programs.
----------------------------------------------------------------------------------------------------------------

The AANA is the professional association for more than 37,000
Certified Registered Nurse Anesthetists (CRNAs) and student nurse
anesthetists, representing over 90 percent of the nurse anesthetists in
the United States. Today, CRNAs are directly involved in delivering 30
million anesthetics given to patients each year in the United States.
CRNA services include administering the anesthetic, monitoring the
patient's vital signs, staying with the patient throughout the surgery
as well as providing acute and chronic pain management services. CRNAs
provide anesthesia for a wide variety of surgical cases and are the
sole anesthesia providers in almost 100 percent of rural hospitals,
affording these medical facilities obstetrical, surgical, and trauma
stabilization, and pain management capabilities. CRNAs work in every
setting in which anesthesia is delivered, including hospital surgical
suites and obstetrical delivery rooms, ambulatory surgical centers
(ASCs), pain management units and the offices of dentists, podiatrists
and plastic surgeons.
Nurse anesthetists are experienced and highly trained anesthesia
professionals whose record of patient safety in the field of anesthesia
was bolstered by the Institute of Medicine report in 2000, which found
that anesthesia is 50 times safer than 20 years previous. (Kohn L,
Corrigan J, Donaldson M, ed. To Err is Human. Institute of Medicine,
National Academy Press, Washington DC, 2000.) Nurse anesthetists
continue to set for themselves the most rigorous continuing education
and re-certification requirements in the field of anesthesia. Relative
anesthesia patient safety outcomes are comparable among nurse
anesthetists and anesthesiologists, with Pine having recently
concluded, ``the type of anesthesia provider does not affect inpatient
surgical mortality.'' (Pine, Michael MD et al. ``Surgical mortality and
type of anesthesia provider.'' Journal of American Association of Nurse
Anesthetists. Vol. 71, No. 2, p. 109-116. April 2003.)
Even more recently, a study published in Nursing Research indicates
that obstetrical anesthesia, whether provided by Certified Registered
Nurse Anesthetists (CRNAs) or anesthesiologists, is extremely safe, and
there is no difference in safety between hospitals that use only CRNAs
compared with those that use only anesthesiologists. (Simonson, Daniel
C et al. ``Anesthesia Staffing and Anesthetic Complications During
Cesarean Delivery: A Retrospective Analysis.'' Nursing Research, Vol.
56, No. 1, pp. 9-17. January/February 2007). In addition, a recent AANA
workforce study's data showed that CRNAs and anesthesiologists are
substitutes in the production of surgeries, and it is important to note
that through continual improvements in research, education, and
practice, nurse anesthetists are vigilant in their efforts to ensure
patient safety.
CRNAs provide the lion's share of anesthesia care required by our
U.S. Armed Forces through active duty and the reserves. In May 2003 at
the beginning of ``Operation Iraqi Freedom,'' 364 CRNAs were deployed
to the Middle East to ensure military medical readiness capabilities.
For decades, CRNAs have staffed ships, remote U.S. military bases, and
forward surgical teams without physician anesthesiologist support.

IMPORTANCE OF TITLE VIII NURSE ANESTHESIA EDUCATION FUNDING

The nurse anesthesia profession's chief request of the Subcommittee
is for $4 million to be reserved for nurse anesthesia education and $67
million for advanced education nursing from the Title VIII program. We
feel that this funding request is well justified, as we are seeing a
vacancy rate of nurse anesthetists in the United States impacting
people's healthcare. The Title VIII program, which has been strongly
supported by members of this Subcommittee in the past, is an effective
means to help address the nurse anesthesia workforce demand. This
demand for CRNAs is something that the nurse anesthesia profession
addresses every day with success and also with the critical assistance
of Federal funding through HHS' Title VIII appropriation.
The AANA is very concerned that the President's fiscal year 2009
budget proposal eliminates funding for Advanced Education Nursing
Programs, which seek to increase the number of providers in rural and
underserved America and are the master's and doctoral prepared
providers who are eligible to serve as faculty. Therefore, cuts to this
program in Title VIII present a two-fold loss--reducing the number of
providers who are trained as clinicians to fill the nursing shortage
and reducing the number of eligible faculty to alleviate the faculty
shortage.
Increasing funding for advanced education nursing from $61.8
million to $67 million is necessary to meet the continuing demand for
nursing faculty and other advanced education nursing services
throughout the United States. Only a limited number of new programs and
traineeships can be funded each year at the current funding levels. The
program provides for competitive grants that help enhance advanced
nursing education and practice and traineeships for individuals in
advanced nursing education programs. This funding is critical meeting
the nursing workforce needs of Americans who require healthcare. In
2007, the AANA conducted a nurse anesthesia workforce study that found
a 12.6 percent vacancy rate in hospitals for CRNAs, and a 12.5 percent
faculty vacancy rate. The supply of clinical providers has increased in
recent years, stimulated by increases in the number of CRNAs trained.
Between 2003-2007, the number of nurse anesthesia educational program
graduates nearly doubled. However, the nurse anesthetist vacancy rate
remained steady at around 12 percent, which is likely due to increased
demand for anesthesia services as the population ages, growth in the
number of clinical sites requiring anesthesia services, and CRNA
retirements.
The problem is not that our 108 accredited programs of nurse
anesthesia are failing to attract qualified applicants. It is that they
have to turn them away by the hundreds. The capacity of nurse
anesthesia educational programs to educate qualified applicants is
limited by the number of faculty, the number and characteristics of
clinical practice educational sites, and other factors. A qualified
applicant to a CRNA program is a bachelor's educated registered nurse
who has spent at least one year serving in an acute care healthcare
practice environment. Nurse anesthesia educational programs are located
all across the country including the following States:

------------------------------------------------------------------------
Number of
Accredited Nurse
State Anesthesia
Programs
------------------------------------------------------------------------
AL................................................... 2
IA................................................... 1
IL................................................... 5
LA................................................... 2
NJ................................................... 2
PA................................................... 12
RI................................................... 2
TX................................................... 5
WA................................................... 1
WI................................................... 1
------------------------------------------------------------------------

Recognizing the important role nurse anesthetists play in providing
quality healthcare, the AANA has been working with the 108 accredited
nurse anesthesia educational programs to increase the number of
qualified graduates. In addition, the AANA has worked with nursing and
allied health deans to develop new CRNA programs.
The Council on Certification of Nurse Anesthetists (CCNA) reports
that in 1999, our schools produced 948 new graduates. In 2005, that
number had increased to 1,790, an 89 percent increase in just five
years. This growth is expected to continue. The CCNA projects CRNA
programs to produce over 2,000 graduates in 2008. To truly meet the
nurse anesthesia workforce challenge, the capacity and number of CRNA
schools must continue to expand. With the help of competitively awarded
grants supported by Title VIII funding, the nurse anesthesia profession
is making significant progress, expanding both the number of clinical
practice sites and the number of graduates.
The AANA is pleased to report that this progress is extremely cost-
effective from the standpoint of Federal funding. Anesthesia can be
provided by nurse anesthetists, physician anesthesiologists, or by
CRNAs and anesthesiologists working together. As mentioned earlier, the
study by Pine et al confirms, ``the type of anesthesia provider does
not affect inpatient surgical mortality.'' Yet, for what it costs to
educate one anesthesiologist, several CRNAs may be educated to provide
the same service with the same optimum level of safety. Nurse
anesthesia education represents a significant educational cost-benefit
for supporting CRNA educational programs with Federal dollars vs.
supporting other models of anesthesia education.
To further demonstrate the effectiveness of the Title VIII
investment in nurse anesthesia education, the AANA surveyed its CRNA
program directors in 2003 to gauge the impact of the Title VIII
funding. Of the eleven schools that had reported receiving competitive
Title VIII Nurse Education and Practice Grants funding from 1998 to
2003, the programs indicated an average increase of at least 15 CRNAs
graduated per year. They also reported on average more than doubling
their number of graduates, who provide care to patients during and
following their education. Moreover, they reported producing additional
CRNAs that went to serve in rural or medically underserved areas. Under
both of these circumstances, an increased number of student nurse
anesthetists and CRNAs are providing healthcare to the people of
medically underserved America.
We believe it is important for the Subcommittee to allocate $4
million for nurse anesthesia education for several reasons. First, as
this testimony has documented, the funding is cost-effective and very
needed. Second, the Title VIII authorization previously providing such
a reserve expired in September 2002. Third, this particular funding is
important because nurse anesthesia for rural and medically underserved
America is not affected by increases in the budget for the National
Health Service Corps and community health centers, since those
initiatives are for delivering primary and not surgical healthcare.
Lastly, this funding meets an overall objective to increase access to
quality healthcare in medically underserved America.

TITLE VIII FUNDING FOR STRENGTHENING THE NURSING WORKFORCE

The AANA joins a growing coalition of nursing organizations,
including the Americans for Nursing Shortage Relief (ANSR) Alliance and
representatives of the nursing community, and others in support of the
Subcommittee providing a total of $200 million in fiscal year 2009 for
nursing shortage relief through Title VIII. This amount is
approximately $44 million over the fiscal year 2008 level and $90
million above the President's fiscal year 2009 budget.
Every district in America is familiar with the importance of
nursing. The AANA appreciates the support for nurse education funding
in fiscal year 2008 and past fiscal years from this Subcommittee and
from the Congress. The need for increasing nurse educational funding to
strengthen our healthcare is clear. According to the Office of the
Actuary at the Centers for Medicare & Medicaid Services, America spent
about $2.1 trillion on healthcare in 2006, which is the most recent
year for which the agency had records. About $401 billion of that was
from Medicare outlays. Medicaid spending was $309 billion. It is
estimated that Medicare directs over $8.7 billion of its outlays to
Graduate Medical Education (GME), of which more than $2.3 billion goes
to Direct GME. Approximately 99 percent of that educational funding
helps to educate physicians and allied health professionals, and about
1 percent is allocated to help educate nurses.
In the interest of patients past and present, particularly those in
rural and medically underserved parts of this country, we ask Congress
to reject cuts from Federal investments in CRNA and nursing educational
funding programs and to provide these programs the sustained increases
required to help ensure Americans get the healthcare that they need and
deserve. Quality anesthesia care provided by CRNAs saves lives,
promotes quality of life, and makes fiscal sense. This federal support
for nurse education will improve patient access to quality services and
strengthen the Nation's healthcare delivery system. Thank you.
______

Prepared Statement of the American Chemical Society

The American Chemical Society (ACS) appreciates the opportunity to
submit public testimony to the Labor, Health and Human Services,
Education, and Related Agencies Subcommittee on the fiscal year 2009
budget for the U.S. Department of Education (DoEd).
The ACS is a nonprofit scientific and educational organization,
chartered by Congress in 1937, with more than 160,000 chemical
scientists and engineers as members. The world's largest scientific
society, ACS advances the chemical enterprise, increases public
understanding of chemistry and science, and brings its expertise to
bear on state and national matters.
A hardworking and entrepreneurial American workforce, coupled with
aggressive federal and private investment in scientific and
technological research, sent a man to the moon, harnessed the atom,
sequenced the human genome, and built a dynamic, robust, and growing
economy that is the envy of the world. As the 21st Century blossoms, we
must revitalize our commitment to strengthen the pillars of American
innovation and competitiveness--education, basic research, and a
business environment to drive innovation.
Last year, Congress showed strong bipartisan support for increased
investment to strengthen the U.S. science, technology, engineering, and
mathematics (STEM) education pipeline and basic research in the
physical sciences by enacting the America COMPETES Act. This
groundbreaking legislation authorizes a dramatic expansion of federal
investments in many aspects of STEM education from teacher training and
recruitment, to educational research, to support for students studying
in science and technology fields. As other nations around the globe are
quickly advancing scientifically and technologically, it is imperative
that the Congress--and especially your Subcommittee--appropriate the
funding necessary to fully implement the America COMPETES Act.

AMERICAN COMPETITIVENESS INITIATIVE

The ACS supports the $175 million proposed for fiscal year 2009 by
the Administration's American Competitiveness Initiative for math and
science education programs at the Department of Education.
We support the proposed funding level of $70 million for the
Advanced Placement/International Baccalaureate as well as $95 million
for the new Math Now program. Both of these new initiatives were
authorized by the America COMPETES Act and are broadly supported by the
scientific, education, and business communities.
Our Society continues to strongly support the Administration's
Adjunct Teacher Corps initiative, proposed at $10 million in fiscal
year 2009, which would encourage up to 30,000 experienced professionals
with subject-matter knowledge to enter the classroom to teach part- or
full-time in areas of high need, including science and math. We
recommend that sufficient funding be provided to ensure adequate
teacher development and certification for these professionals.

K-12 EDUCATION

We profoundly disagree with Administration's decision to flat fund
the DoEd Math and Science Partnership program and strongly support a
budget increase in fiscal year 2009 toward the fully authorized level
of $450 million. One of the most critical issues facing STEM education
today is the supply of qualified K-12 science and mathematics teachers.
The Math and Science Partnerships program, authorized in the No Child
Left Behind Act at an increasing annual level to reach a sustainable
level of $450 million by fiscal year 2007, is the sole source of
dedicated K-12 math and science funding at the Department of Education.
It supports valuable long-term, content-based, continuing education for
math and science teachers--the type of training that research shows is
most effective in improving student achievement.

VOCATIONAL AND TECHNICAL EDUCATION

We are highly disappointed by the administration's decision to
eliminate the Perkins Career and Technical Education program, which was
reauthorized by Congress with overwhelming support in 2006. We urge
that Congress appropriate full funding for this broadly supported
program to aid students in acquiring rigorous academic and technical
skills to prepare them for careers in science and technology that will
help maintain U.S. competitiveness in the global economy.

HIGHER EDUCATION

We support the administration's proposal to expand the Graduate
Assistance in Areas of National Need (GAANN) program by 10 percent in
fiscal year 2009 to $32.5 million. The budget request for GAANN, which
provides graduate students in science and other high-need fields with
enhanced fellowship assistance, would support 747 fellowships in 2009,
including 529 new fellows. ACS supports expansion of this program to at
least 1,200 fellowships. Our Society also believes that the Minority
Science and Engineering Improvement program is an effective mechanism
to increase the participation of underrepresented minorities in
scientific and technological careers.
In closing, we thank you for the opportunity to express our views
on the funding priorities of your Subcommittee. We strongly urge you to
make the sustained and robust investments in STEM education that will
be critical to the success of U.S. global competitiveness and continued
economic growth.
______

Prepared Statement of the American College of Obstetricians and
Gynecologists

The American College of Obstetricians and Gynecologists (ACOG),
representing 52,000 physicians and partners in women's health care, is
pleased to offer this statement to the Senate Committee on
Appropriations, Subcommittee on Labor, Health and Human Services, and
Education. We thank Chairman Harkin, ranking member Specter, and the
entire subcommittee for their leadership to continually address women's
health research at the National Institutes of Health (NIH).
The Nation has made important strides to improve women's health
over the past several years, and ACOG is grateful to this Committee for
its commitment to ensure that vital research continues to eliminate
disease and to ensure valuable new treatment discoveries are
implemented. This dedicated commitment to elevate, promote and
implement medical research faces an uncertain future at a time when
scientists are on the cusp of new cures.
We urge the Committee to support a 6.6 percent increase for the
National Institutes of Health (NIH), and all of its institutes, in
fiscal year 2009.

WOMEN'S HEALTH RESEARCH AT THE NIH

NIH institutes work collaboratively to conduct women's health
research. The Eunice Kennedy Shiver National Institute of Child Health
and Human Development (NICHD) conducts the majority of women's health
research, and has made critical accomplishments in preterm birth,
contraceptive research, and infertility. The National Cancer Institute
(NCI) has made monumental discoveries on gynecologic cancers, and the
National Institute of Diabetes and Digestive and Kidney Diseases
(NIDDK) works with the NICHD to discover treatments for urinary
incontinence. The Office of Research on Women's Health (ORWH) in the
NIH Office of the Director coordinates women's health research projects
and manages mentoring programs for new investigators.

MENTORING NEW INVESTIGATORS

Despite the NIH's critical advancements, reduced funding levels
have made it difficult for research to continue, largely due to the
lack of new investigators. The NIH advanced women's health research
during the Congressional doubling between fiscal year 1998 and fiscal
year 2003, but funding increases have been so low since fiscal year
2003, the NIH budget is almost same as it was before the doubling.
The Building Interdisciplinary Research Careers in Women's Health
(BIRCWH), operated by the ORWH, and the Women's Reproductive Health
Research (WRHR) Career Development Program at the NICHD, attract new
researchers, but low pay lines make it difficult for the NIH to
maintain them. We urge the Committee to significantly increase funding
for women's health research at the NIH to maintain a high level of
research innovation and excellence, in turn reducing the incidence of
maternal morbidity and mortality and discovering cures for other
chronic conditions.

OFFICE OF THE DIRECTOR-OFFICE OF RESEARCH ON WOMEN'S HEALTH (ORWH)

Coordinating and Promoting Women's Health Research throughout NIH
Established in September 1990, the Office of Research on Women's
Health (ORWH) is a focal point for women's health research at the NIH.
The ORWH manages the BIRCWH program, which mentors new
investigators at several institutions including the University of
Wisconsin, Madison, in Madison, Wisconsin; Tulane University, in New
Orleans, Louisiana; Northwestern University and the University of
Illinois, Chicago, in Evanston and Chicago, Illinois, respectively; and
Pennsylvania State University and Magee Women's Hospital of the
University of Pittsburgh Medical Center in University Park, and
Pittsburgh, Pennsylvania, respectively.
BIRCWH programs are expanding women's health research through
career development, increasing diversity in the field of women's
health, promoting interdisciplinary research training and developing
independent researchers with backgrounds in high priority women's
health research areas.
The ORWH recently launched the NIH Women's Health Fellowships in
Intramural Women's Health Research. This intramural program is funded
through the Foundation of the NIH, which was established by Congress to
maximize the resources at the NIH and support medical research through
public-private partnerships. The fellowships are supported by donations
from Battelle and AstraZeneca.
An ob-gyn resident at Loyola University, Chicago, Illinois, is one
of the first recipients of the fellowship. She is studying the
difference in severity and prevalence of fibroids in African American
and white women. The Women's Health Fellowship helps new investigators
enhance their research skills, and mentor women to senior positions in
science.
ACOG urges Congress to increase funding for the ORWH to help
prepare the next generation of women's health researchers.

EUNICE KENNEDY SHRIVER NATIONAL INSTITUTE OF CHILD HEALTH AND HUMAN
DEVELOPMENT (NICHD)

Expanding Maternal Health Research
The Maternal Fetal Medicine Units (MFMU) Network investigates
clinical questions in maternal fetal medicine and obstetrics, with a
focus on preterm birth, and has advanced women's health research by
making several monumental discoveries including using progesterone
treatments to reduce preterm birth.
The MFMU is working at 14 sites across the United States
(University of Alabama, University of Texas-Houston, University of
Texas-Southwestern, Wake Forest University, University of North
Carolina, Brown University-Women and Infant's Hospital, Columbia
University, Drexel University, University of Pittsburgh-Magee Women's
Hospital, University of Utah, Northwestern University, Wayne State
University, Case Western University, and Ohio State University), to
reduce the risks of pre term birth, cerebral palsy, and preeclampsia
(high blood pressure).
In 2006 Congress passed the PREEMIE Act of 2006, Public Law 109-
450, increasing research funding on prematurity. In June 2008, the
NICHD will hold the Surgeon's Conference on Preventing Preterm Birth,
as authorized in Public Law 109-450.
ACOG urges Congress to increase funding for the NICHD, which will
fund the research authorized in the PREEMIE Act, and increase funds for
the MFMU.

NATIONAL CANCER INSTITUTE (NCI)

Developing Gynecologic Cancer Research, Prevention and Education
The NCI is funding vital women's health research throughout the
United States.
--Effects of Cervical Procedure on Pregnancy.--At the Washington
University School of Medicine, St. Louis, MO, researchers are
studying the impact of the Loop Electrosurgical Excision
Procedure (LEEP), which is a common treatment for abnormal
cells on the cervix, on subsequent pregnancy. This study may
determine whether LEEP increases the risk of preterm birth and
other adverse pregnancy outcomes.
--Stress and Ovarian Cancer.--At the University of Texas, MD Anderson
Cancer Center, Houston, TX, researchers are examining the
effects of chronic stress on growth and progression of ovarian
cancer along with underlying mechanisms. Based on these
results, researchers hope to gain a better understanding of the
adverse effects of chronic stress and discover new strategies
for blocking its harmful effects on cancer patients.
--Pediatric Cancer Survivor Fertility.--There are currently over
250,000 childhood cancer survivors in the United States, and
while cancer therapies improve long-term survival, such
treatments may impair fertility potential and cause premature
ovarian failure. Research at the University of Pennsylvania,
Philadelphia, PA, will provide preliminary data for the
establishment of a long-term study of pediatric cancer
survivors and their pregnancy rates, pregnancy outcomes and the
occurrence of premature menopause.

Expanding Ovarian Cancer Research
Despite the women's health research advancements at the NCI, much
more needs to be done. According to the NCI, there will be 22,430 new
cases of ovarian cancer and 15,280 deaths from ovarian cancer in the
United States in 2007. With more ovarian cancer biomarker research, we
may reduce ovarian cancer.
ACOG urges Congress to pass the Ovarian Cancer Biomarker Act, S.
2569/H.R. 3689, which would increase funding for research and clinical
centers at the NCI for risk stratification, early detection and
screening of ovarian cancer.

Increasing Gynecologic Cancer Education
Public and provider education on gynecologic cancers is critical to
early detection. When women and their doctors understand the symptoms
and risk factors of gynecologic cancers they can find appropriate
medical help quickly, increasing the potential for earlier detection.
ACOG urges Congress to fully fund Johanna's Law, Public Law 109-
475, at $10 million in fiscal year 2009, which would increase provider
and public education on gynecologic cancers, saving thousands of
women's lives.

NATIONAL INSTITUTE OF DIABETES AND DIGESTIVE AND KIDNEY DISEASES
(NIDDK)

Exploring Treatments for Urinary Incontinence
The Urinary Incontinence Treatment Network (UITN) at the NIDDK and
the NICHD, researches urinary incontinence treatments. The UITN
clinical trials compare the outcomes of commonly used surgical
procedures, drug therapies, and behavioral treatments for incontinence.
The Trial of Mid-Urethral Slings (TOMUS) researches the outcomes of
surgical procedures to treat stress urinary incontinence. Although
these surgical procedures are approved by the Food and Drug
Administration (FDA), researchers are investigating which are more
effective.
The Stress Incontinence Surgical Treatment Efficacy Trial (SISTEr)
studies the long-term outcomes of commonly performed stress urinary
incontinence treatment surgeries. The Burch procedure and the sling
produce have estimated cure rates of 60 percent-90 percent, and
researchers are determining which produces the best long-term outcome.
The Behavior Enhances Drug Reduction of Incontinence (BE-DRI)
studies whether adding behavioral treatment to drug therapy makes it
possible to discontinue drug treatment, and still maintain a reduced
number of incontinence accidents.
ACOG urges Congress to increase funding for critical women's health
research at the NIDDK.
Again, we would like to thank the Committee for its continued
support of programs to improve women's health, and urge Congress to
increase funding for the NIH and its institutes 6.6 percent above
fiscal year 2008 levels in fiscal year 2009.
______

Prepared Statement of the American Diabetes Association

INTRODUCTORY REMARKS

Thank you Chairman Harkin, ranking member Specter and members of
the committee for your work to provide the first increase since fiscal
year 2005 for education and prevention programs at the Centers for
Disease Control and Prevention (CDC) and diabetes research at the
National Institutes of Health (NIH). As the nation's leading nonprofit
health organization providing diabetes research, information and
advocacy, we appreciate the opportunity to submit testimony on the
importance of federal funding for vital diabetes programs and the
devastating effect diabetes is having on our nation.

BACKGROUND INFORMATION

There are currently 20.8 million Americans who have diabetes, 7
percent of the population. Of the 20.8 million, 6.2 million are unaware
that they have diabetes. Additionally there are 54 million more
Americans with pre-diabetes \1\ meaning their blood glucose levels are
higher than normal and are at increased risk of progressing to diabetes
unless they take steps to reduce their risk. Together, this means that
25 percent of the U.S. population either has, or is at risk for
developing, this serious disease. Federal funding for diabetes
prevention and research efforts are critical to facing this epidemic.
---------------------------------------------------------------------------
\1\ www.cdc.gov/diabetes/pubs/pdf/ndfs_2005.pdf
---------------------------------------------------------------------------
Diabetes is Serious.--It is a chronic condition that impairs the
body's ability to use food for energy. The hormone insulin, which is
made in the pancreas, helps the body change food into energy. In people
with diabetes, the pancreas either does not create any insulin, which
is type 1 diabetes, or the body doesn't create enough insulin and/or
cells are resistant to insulin, which is type 2 diabetes. If left
untreated, diabetes results in too much glucose in the blood stream.
Type 1 individuals account for 5 to 10 percent of all diagnosed cases;
type 2 diabetes accounts for 90 to 95 percent of diabetes cases.
Diabetes is the leading cause of kidney disease, adult-onset blindness
and lower limb amputations as well as a significant cause of heart
disease and stroke.\2\ Every 21 seconds someone is diagnosed with
diabetes. More than 4,000 people will be diagnosed in 24 hours. During
this same time frame there will be 230 amputations, 120 people will
enter end-stage kidney disease programs, and 55 people will go blind
all due to diabetes.\3\
---------------------------------------------------------------------------
\2\ www.cdc.gov/diabetes/pubs/pdf/ndfs_2005.pdf
\3\ Frank Vinicor, Associate Director for Public Health Practice at
the Centers for Disease Control, qtd. in N.R. Kleinfield, ``Diabetes
and Its Awful Toll Quietly Emerges as a Crisis,'' The New York Times, 9
January 2006.
---------------------------------------------------------------------------
Diabetes is Costly.--The total annual economic cost of diabetes in
2007 was estimated to be $174 billion. Medical expenditures totaled
$116 billion and were comprised of $27 billion for diabetes care, $58
billion for chronic diabetes-related complications, and $31 billion for
excess general medical costs. Indirect costs resulting from increased
absenteeism, reduced productivity, disease-related unemployment
disability, and loss of productive capacity due to early mortality
totaled $58 billion. This is an increase of $42 billion since 2002. A
32 percent increase, meaning that the dollar amount has grown over $8
billion each year. In fact, approximately one out of every five health
care dollars is spent caring for someone with diagnosed diabetes, while
one in ten health care dollars is attributed to diabetes.\4\
Additionally, approximately one-third of Medicare expenses are
associated with treating diabetes and its complications.\5\
---------------------------------------------------------------------------
\4\ http://care.diabetesjournals.org/misc/econcosts.pdf
\5\ http://www.nih.gov/about/researchresultsforthepublic/
Type2Diabetes.pdf
---------------------------------------------------------------------------
Diabetes is Deadly.--It is the fifth leading cause of death by
disease, compromising of an estimated 224,092 deaths each year.
Diabetes is likely to be underreported as a cause of death. Studies
have found that less than half of individuals with diabetes had it
listed on their death certificate. The risk for death among people with
diabetes is about twice that of people without diabetes of similar
age.\6\ Having diabetes lowers the average life expectancy by up to 15
years.\7\ Unfortunately, while the death rate due to diabetes has
increased by about 45 percent since 1987 while death rates from cancer,
heart disease, and stroke have declined.\8\
---------------------------------------------------------------------------
\6\ www.cdc.gov/diabetes/pubs/pdf/ndfs_2005.pdf
\7\ Portuese E and Orchard T: Mortality in Insulin-Dependent
Diabetes. In Diabetes in America (pp. 221-232). Bethesda, MD: National
Diabetes Data Group, NIH, 1995.
\8\ JAMA 294: 1255, 2005.
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THE AMERICAN DIABETES ASSOCIATION'S FUNDING REQUESTS

Diabetes is one of the greatest U.S. public health crises of the
21st century. To stem the tide of this epidemic, it is essential that
diabetes prevention and outreach efforts expand and scientists and
researchers be enabled to continue their work towards finding a cure.
Therefore, we are requesting:
--$83.5 million for CDC's Division of Diabetes Translation (DDT).--
This would be a $20.8 million increase, one dollar for each
American suffering from diabetes. This program received an
$880,000 increase in fiscal year 2008. This year the
Administration has requested a reduction of $257,000 to this
essential prevention and education program.
--$1.818 billion for the National Institute for Diabetes, Digestive
and Kidney Diseases (NIDDK) at the NIH.--This would add $112.6
million to NIDDK and represent a 6.6 percent increase over
fiscal year 2008 funding. The additional funding would provide
a 3 percent increase over biomedical inflation which continues
to eat into the purchasing power of research funding. The
Administration has requested an increase of $2 million for
fiscal year 2009.

DIABETES INTERVENTIONS AT THE CENTERS FOR DISEASE CONTROL AND
PREVENTION

The CDC's Division of Diabetes Translation is critical to our
national efforts to prevent and manage diabetes because DDT literally
translates research, like that done at NIH, into real solutions and
practices. Appropriated funds to DDT are focused on: defining the
diabetes burden through the use of public health surveillance;
translating research findings into clinical and public health practice;
developing and maintaining state-based diabetes and prevention
programs; and supporting the National Diabetes Education Program. Our
request of $20.8 million will allow these critical programs at DDT to
expand and more adequately meet the growing demands of the diabetes
epidemic to prevent or delay this destructive disease.
The research findings that are translated into practice identify
and detail the public health implications of results from clinical
trials and scientific studies. These findings are applied in health
care systems and within local communities. Areas of translational
research include: access to quality care for diabetes, especially
within managed care organizations; cost-effectiveness of diabetes
prevention and control activities; effectiveness of health practices to
address risk factors for diabetes; and demonstration of primary
prevention of type 2 diabetes.
DDT provides support for 59 state and territorial-based Diabetes
Prevention and Control Programs (DPCPs). These programs work to
increase outreach and education, and to reduce the complications
associated with diabetes. Due to funding constraints, DDT currently
funds 28 states at a higher level of support called basic
implementation. At this level, states are able to devise and execute
community-based programs on a broader scale. The remaining 22 states, 8
territories, and the District of Columbia are funded at the lower,
capacity building level. This level of funding establishes a presence
in a state, but does not allow them to develop much in the way of
intervention. The level of funding proposed by the President's budget
would not allow for adequate increases in the amount individual states
are provided.
The DDT conducts additional activities which work to eliminate the
preventable burden of diabetes and to educate communities. The Diabetes
Primary Prevention Initiative, which was created from an initial NIH
clinical trial, is an effort to plan and create pilots focusing on
health implementation of diabetes primary prevention programs. This
program is currently funded in five States as demonstration projects
and is expected to end this year. Additional funds would be needed to
translate primary prevention in all 50 States.
In a joint cooperative CDC is working with NIH, and over 200
partners, to jointly sponsor the National Diabetes Education Program
(NDEP), which seeks to improve the treatment and outcomes of people
with diabetes, promote early detection, and prevent the onset of
diabetes. In fiscal year 2008 the NDEP focused on minority populations
who bear a disproportionate burden of diabetes.

DIABETES RESEARCH AT THE NATIONAL INSTITUTES FOR HEALTH

The National Institute for Diabetes, Digestive and Kidney Diseases
is one of the 27 institutes housed at the NIH. Through its valuable
work, NIDDK is poised to make major discoveries that could prevent or
reverse the autoimmune destruction of insulin-producing cells. While
there is no cure for diabetes, researchers at NIH are working on a
variety of projects that represent hope for the millions of individuals
with type 1 and type 2 diabetes. The list of advances in treatment and
prevention is thankfully long, but it is important to understand what
has been, and what can be achieved for Americans with diabetes with
additional funding.
A generation ago, 20 percent of individuals diagnosed with type 1
diabetes died within 20 years of diagnosis and over 30 percent died
within 25 years. Thanks to research at NIDDK, patients now use a
variety of insulin formulations, such as rapid or long acting insulin,
insulin pumps, or inhaled insulin to control their blood glucose. Even
components of an artificial pancreas are being tested in clinical
studies.\9\
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\9\ http://www.nih.gov/about/researchresultsforthepublic/
Type1Diabetes.pdf
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Researchers have already learned a great deal about the biology of
diabetes, and they now understand much more about the loss of islet
cell function. These discoveries have led directly to islet cell
transplants, which have given some individuals more than a year of
freedom from insulin administration. Scientists are now working on ways
to keep the islet cells functioning longer by suppressing the body's
natural immune response to the transplanted cells.\10\
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\10\ http://www.nih.gov/about/researchresultsforthepublic/
Type1Diabetes.pdf
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Recognizing the growing problem of obesity and its increasing
prevalence among youth, the NIDDK is focusing on paths to prevention.
The clinical trial, the Diabetes Prevention Program (DPP) focused on
discovering whether diet and exercise or an oral diabetes drug could
prevent or delay the onset of type 2 diabetes in people with impaired
glucose tolerance. The trial found that with modest lifestyle
interventions individuals can reduce their risk of developing type 2
diabetes by 58 percent, the oral diabetes medication also reduced risk,
although less dramatically.\11\
---------------------------------------------------------------------------
\11\ http://diabetes.niddk.nih.gov/dm/pubs/preventionprogram/
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Additionally, scientists have found that timely laser surgery and
appropriate follow-up can reduce the risk of blindness for a person
with diabetic retinopathy by 90 percent. This is significant as
diabetes is the leading cause of new cases of blindness among adults
aged 20-74 years. Another major clinical trial, the Diabetes Control
and Complications Trial, showed that intensive glucose control
dramatically delays or prevents the eye, nerve, kidney, and heart
complications of type 1 diabetes.\12\
---------------------------------------------------------------------------
\12\ http://www.nih.gov/about/researchresultsforthepublic/
Type2Diabetes.pdf
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CONCLUSION

As you are considering the fiscal year 2009 appropriation, we ask
you to keep in mind that diabetes is a burgeoning epidemic with a
rising morbidity rate that will create a financial and socioeconomic
burden of even greater proportion in the very near future. If left
unchecked it will overwhelm our healthcare system as well as tragically
affect millions of American families. The CDC translational programs
and NIH research go hand in hand in the effort to combat the diabetes
epidemic. Our Nation can more rapidly move toward curing, preventing,
and managing this disease by increasing funding for diabetes education,
programs and research.
The American Diabetes Association strongly urges the Subcommittee
and the Senate to provide a $20.8 million increase for the CDC's
Division of Diabetes Translation. With 58 percent of type 2 diabetes
being preventable this is a smart investment in the well being of our
nation. Additionally, we urge the Subcommittee to increase NIH funding
by 6.6 percent allowing for a continued and expanded commitment to
diabetes research.
We must have a proactive approach to this disease, rather than
merely reacting to its consequences. Your continued leadership on this
growing epidemic is essential to accomplishing this goal. Again, thank
you for your proven commitment to the diabetes community and for the
opportunity to submit this testimony. The American Diabetes Association
is prepared to answer any questions you might have on these important
issues.
______

Prepared Statement of the American Heart Association

Although heart disease and stroke remain our Nation's No. 1 and No.
3 killers respectively, death rates are on the decline. Thanks in large
measure to advancements in medical research, treatment and prevention
programs, death rates from coronary heart disease have plummeted by
almost 26 percent since 1999 and stroke mortality has fallen by 24
percent. If this positive trend holds, a total of 240,000 lives will be
spared in 2008 alone.
But while the battle against heart disease and stroke has been
successfully joined, the war is far from won. Heart disease, stroke and
other forms of cardiovascular disease (CVD) still claim more than
860,000 lives in the United States each year and the costs associated
with this disease are projected to exceed $448 billion in 2008.
Moreover, any gains we have achieved could be eroded by a rise in often
preventable and certainly treatable risk factors, such as high blood
pressure, cholesterol, diabetes, obesity and a lack of physical
exercise. Continued progress in the fight against CVD is not
guaranteed. We must work at it every day through increased research,
better access to treatment and reinvigorated prevention efforts.
Sadly, the President's fiscal year 2009 budget turns a blind eye to
these challenges. Funding for NIH fails to keep pace with medical
research inflation for the sixth year in a row, curtailing work on
promising breakthroughs. Increased emphasis on preventing CVD is
critical too, but programs that teach Americans how to build healthier
lives free of heart disease and stroke are cut or eliminated. Access to
quality care and treatment is also jeopardized, by cuts in programs
that develop evidence-based information to improve health care
outcomes, comparative effectiveness research, and advances in health
information technology.

FUNDING RECOMMENDATIONS--INVESTING IN THE HEALTH OF OUR NATION

When adjusted for medical research inflation, the NIH budget is
roughly 11 percent lower in fiscal year 2008 than in fiscal year 2003,
and funding for CVD research is 15 percent lower for that same time
period. Prevention also suffers. Funding for the Centers for Disease
Control and Prevention's Heart Disease and Stroke Prevention Program
and the WISEWOMAN screening and evaluation program are cut. Less than a
third of all States receive Federal resources to carry out these
critical prevention initiatives.
Where you live could determine if you survive a sudden cardiac
arrest. The Rural and Community Access to Emergency Devices Program
provides grants to rural areas and communities to buy automated
external defibrillators (AEDs), place these life-saving devices in
schools, churches, fire stations and other sites, and train lay
rescuers and first responders in their use. This successful program is
terminated in the President's budget.
With CVD risk factors on the rise, it is clearly not the time to
retreat and slash investments that prevent and treat America's leading
and most costly killer. If we fail to take deliberate and focused
action now, we will pay much more in the future in lost lives and
higher health care costs. Our recommendations address this crisis in a
comprehensive but fiscally responsible way.
Funding Gap for the National Institutes of Health (NIH)
NIH-supported research has revolutionized patient care and holds
the key to finding new ways to prevent, treat and cure CVD, resulting
in longer, healthier lives and lower health care costs. NIH research
also generates economic growth and preserves our Nation's position as
the world leader in pharmaceuticals and biotechnology. However, the
President's fiscal year 2009 budget request for NIH is flat. When
adjusted for medical research inflation, the gap between the funding
levels achieved with the doubling of NIH's budget between 1999 and 2003
and the current request now approaches a 14 percent decline in support
for the NIH.
The American Heart Association Recommends.--AHA joins the research
and patient advocacy communities in advocating for a fiscal year 2009
appropriation of $31.1 billion for NIH, representing a 3 percent
increase over the 3.5 percent in medical research inflation for a total
funding increase of 6.5 percent. This 3 percent increase over medical
research inflation in consistent with the average NIH appropriation
over the past 30 years (excluding the ``doubling'' period). Such a
sustained and stable funding stream will allow NIH to take advantage of
burgeoning scientific opportunities and protect past congressional
investments in research that have saved millions of lives.
Increase Funding for NIH Heart and Stroke Research: A Proven and Wise
Investment
The decline in the death rates from CVD can be directly linked to
NIH heart and stroke research--with more life-saving treatments and
prevention tactics on the horizon. For example, recent NIH research has
determined that post-menopausal hormone therapy is not useful in the
prevention of heart disease and stroke, has defined the genetic basis
of dangerous responses to essential blood-thinners, and funded the
early work of the 2007 Nobel Prize winners in Physiology or Medicine
for their development of the technology of gene targeting.
Beyond lives saved, NIH research also produces tangible cost
savings. For example, the original NIH tPA drug trial resulted in a 10-
year net $6.47 billion reduction in stroke health care costs. And the
Stroke Prevention in Atrial Fibrillation Trial 1 produced a 10-year net
saving of $1.27 billion. But despite such solid returns on investments
and other successes, NIH heart and stroke research remains
disproportionately under-funded. In fact, only 7 percent of its budget
goes to heart disease research, and a mere 1 percent is devoted to
stroke. That must change.

Cardiovascular Disease Research: National Heart, Lung, and Blood
Institute (NHLBI)
Under the President's budget proposal, funding for CVD research
does not keep pace with medical research inflation and cannot
adequately support current activities or allow investments in promising
research opportunities. The loss of purchasing power over the past few
years has reduced the ability of the NHLBI to fund meritorious
investigator-initiated research and has necessitated cutbacks in
Institute programs. Continued cutbacks will limit the pace at which the
new NHLBI strategic plan can be implemented. Areas in which research
could lag include the ability to translate basic research on human
behavior into real world ways to reduce obesity and promote
cardiovascular health; studies examining genetic susceptibility in the
Framingham population, followed for three generations, and further
research into the best methods for saving lives of those suffering from
cardiac arrest.

Stroke Research: National Institute of Neurological Disorders and
Stroke (NINDS)
An estimated 780,000 Americans will suffer a stroke this year, and
more than 143,000 will die. Many of the 5.8 million stroke survivors
face physical and mental disabilities, emotional distress and huge
costs--a projected $66 billion in medical expenses and lost
productivity in 2008.
The NINDS-sponsored Stroke Progress Review Group has issued a long-
term, stroke research strategic plan. A variety of research initiatives
have since been undertaken, but more funding is needed to fully
implement the plan. Indeed, the fiscal year 2009 request for NINDS
stroke research falls about 50 percent short of the plan's target and
additional resources are needed for programs such as:
--Stroke Translational Research.--Translational studies are essential
to providing cutting-edge stroke treatment, patient care and
prevention. However, due to budget shortfalls, NINDS has been
forced to scale back by 30 percent its Specialized Programs of
Translational Research in Acute Stroke from a planned 10
centers to only 7.
--Genetic Repository.--NINDS could better understand genetic risk
factors associated with stroke by helping more researchers
contribute data and findings to an NIH-funded genetic
repository and to study available samples.
--Neurological Emergencies Treatment Trials Network.--NINDS has
established a clinical research network of emergency medicine
physicians, neurologists and neurosurgeons to develop more and
improved treatments for acute neurological emergencies, such as
strokes. However, the number of trials will be limited by
available funding.
The American Heart Association Recommends.--AHA supports an fiscal
year 2009 appropriation of $2.260 billion for NIH heart research;
$3.112 billion for the NHLBI; $362 million for NIH stroke research; and
$1.644 billion for the NINDS. This represents a 6.5 percent increase
over fiscal year 2008--commensurate with the Association's overall
recommended funding increase for NIH.

Increase Funding for the Centers for Disease Control and Prevention
(CDC)
With so many risk factors on the rise, prevention is the best way
to protect the health of Americans and ease the economic burden of
heart disease and stroke. However, many effective prevention strategies
and programs are not being implemented for lack of funds.
For example, CDC's Division for Heart Disease and Stroke Prevention
funds only 13 States to implement programs to reduce risk factors for
heart disease and stroke, improve emergency response and quality care,
and end treatment disparities. An additional 20 States receive funds
for planning such prevention programs; however, there are no funds for
actual implementation.
This Division also administers the WISEWOMAN program that screens
uninsured, under-insured and low-income women ages 40 to 64 in 14
States for heart disease and stroke risk. They receive counseling,
education, referral and follow-up as needed. Since January 2000, more
than 70,000 women have been screened and more than 170,000 lifestyle
interventions have been conducted. The program should be expanded to
cover the other 36 States, but the President's budget contains no such
funding.
The American Heart Association Recommends.--AHA joins with the CDC
Coalition in support of an appropriation of $7.4 billion for CDC,
including increases for the Heart Disease and Stroke Prevention and
WISEWOMAN programs. Within that total, we recommend $70 million for the
Heart Disease and Stroke Prevention Program, allowing CDC to: (1) add
nine unfunded States to develop State-tailored plans; (2) increase
funding for up to 18 States with current Heart Disease and Stroke
Prevention Programs; (3) continue to support the remaining funded
States; (4) maintain the Paul Coverdell National Acute Stroke Registry;
(5) increase the capacity for national, State and local heart disease
and stroke surveillance; and (6) provide additional assistance for
prevention research and program evaluation. AHA also advocates $25
million to expand WISEWOMAN to additional States and joins with the
Friends of the NCHS in recommending $125 million for NCHS to restore
funding lost and to continue the collection of important public health
data.

Restore Funding for Rural and Community Access to Emergency Devices
(AED) Program
About 94 percent of cardiac arrest victims die outside of a
hospital. Receiving immediate CPR and the use of an AED can more than
double your chance of survival over CPR alone. Communities with
comprehensive AED programs have achieved survival rates of 40 percent
or higher. The Rural and Community AED Program provides grants to
States to buy and place AEDs and train lay rescuers and first
responders to use them. During its first year, 6,400 AEDs were
purchased, and placed and 38,800 individuals were trained. Despite this
success, the President yet again terminates the program in his proposed
fiscal year 2009 budget.
The American Heart Association Recommends.--For fiscal year 2009,
AHA advocates restoring the Rural and Community AED Program to its
fiscal year 2005 level of $8.927 million.

Increase Funding for the Agency for Healthcare Research and Quality
(AHRQ)
AHRQ helps develop evidence-based information to improve health
care decision-making. Through its Effective Health Care Program, AHRQ
supports research focused on outcomes, comparative clinical
effectiveness and the appropriateness of pharmaceuticals, devices and
health care services for conditions such as heart disease, stroke and
high blood pressure.
On another front, AHRQ's health information technology (HIT) plan
will help bring health care into the 21st century. Through more than
$130 million in grants since 2004, AHRQ and its partners have begun
work that can help identify: challenges to HIT adoption and use;
solutions and best practices; and tools that aid hospitals and
clinicians successfully integrate HIT. This must continue.
The American Heart Association Recommends.--AHA joins with Friends
of AHRQ in advocating a $360 million appropriation for the Agency. By
restoring AHRQ to fiscal year 2005 levels, we can improve health care,
reduce medical errors and expand access to outcomes information.

CONCLUSION

Although heart disease, stroke and other forms of cardiovascular
disease are largely preventable, they continue to exact a deadly and
costly toll on our nation. However, adequate funding of research,
treatment and prevention programs will save lives and reduce rising
health care costs. The American Heart Association urges Congress to
consider these recommendations during its deliberations on the fiscal
year 2009 budget. We believe that they are a wise investment for our
nation and the health and well-being of this and future generations of
Americans.
______

Prepared Statement of the American Indian Higher Education Consortium

Summary of Requests.--Summarized below are the fiscal year 2009
(fiscal year 2009) recommendations for the Nation's 36 Tribal Colleges
and Universities (TCUs), covering three areas within the Department of
Education and one in the Department of Health and Human Services,
Administration for Children and Families' Head Start Program.

DEPARTMENT OF EDUCATION PROGRAMS

A. Higher Education Act Programs
Strengthening Developing Institutions.--Section 316 of Title III-A,
specifically supports TCUs through two separate competitive grant
programs: (a) basic development grants and (b) facilities/construction
grants designed to address the critical facilities needs at TCUs. The
TCUs urge the subcommittee to reject the President's fiscal year 2009
budget recommendation to eliminate discretionary funding for this vital
program and instead appropriate $32.0 million and include report
language restating that funds not needed to support continuation grants
or new planning or implementation grants shall be used for facilities,
renovation, and construction grants.
Pell Grants.--TCUs urge the subcommittee to fund the Pell Grants
Program at the highest possible level.

B. Perkins Career and Technical Education Programs
The TCUs urge the subcommittee to reject the funding cut proposed
in the President's budget and appropriate $8.5 million for Sec. 117 of
the Carl D. Perkins Career and Technical Education Improvement Act,
which funds our two Tribally Controlled Postsecondary Vocational
Institutions: United Tribes Technical College and Navajo Technical
College. Additionally, TCUs strongly support the Native American Career
and Technical Education Program (NACTEP) authorized under Sec. 116 of
the Act.

C. Relevant Title IX Elementary and Secondary Education Act (ESEA)
Programs
Adult and Basic Education.--Although Federal funding for tribal
adult education was eliminated in fiscal year 1996, TCUs continue to
offer much needed adult education, GED, remediation and literacy
services for American Indians, yet their efforts cannot meet the
demand. The TCUs request that the subcommittee direct $5.0 million of
the Adult Education State Grants appropriated funds to make awards to
TCUs to support their ongoing and essential adult and basic education
programs.
American Indian Teacher and Administrator Corps.--The American
Indian Teacher Corps and the American Indian Administrator Corps offer
professional development grants designed to increase the number of
American Indian teachers and administrators serving their reservation
communities. The TCUs request that the subcommittee support these
programs at $10.0 and $5.0 million, respectively.

DEPARTMENT OF HEALTH & HUMAN SERVICES PROGRAM

D. Tribal Colleges and Universities Head Start Partnership Program
(DHHS-ACF)
Tribal Colleges and Universities are ideal partners to help achieve
the goals of Head Start in Indian Country. The TCUs are working to meet
the mandate that Head Start teachers earn degrees in Early Childhood
Development or a related discipline. The TCUs request that $5.0 million
be designated for the TCU-Head Start partnership program, to ensure the
continuation of current programs and the resources needed to support
additional TCU-Head Start partnership programs.

DETAILED JUSTIFICATIONS FOR FISCAL YEAR 2009 APPROPRIATIONS REQUESTS
FOR TRIBAL COLLEGES AND UNIVERSITIES

Higher Education Act
The Higher Education Act Amendments of 1998 created a separate
section (316) within Title III-A specifically for the Nation's Tribal
Colleges and Universities. Programs under Titles III and V of the act
support institutions that enroll large proportions of financially
disadvantaged students and that have low per-student expenditures.
Although TCUs, which are truly developing institutions, are providing
access to quality higher education opportunities to some of the most
rural and impoverished areas of the country, the President's fiscal
year 2009 budget proposes eliminating all discretionary funding for the
TCU Title III grants program. TCUs recognize and are grateful for the
positive step that Congress took by including in the fiscal year 2008
Reconciliation Act much needed supplemental funding for Title III and
Title V programs, including the TCU program. The fiscal year 2009
budget recommendation effectively negates this progress by eliminating
discretionary funding needed to fund multi-year development grants. We
believe it was the intent of Congress to supplement the Title III
program funds, NOT to supplant discretionary funding for the very
institutions that disproportionally educate low-income chronically
underserved populations. A clear goal of the Higher Education Act Title
III programs is ``to improve the academic quality, institutional
management and fiscal stability of eligible institutions, in order to
increase their self-sufficiency and strengthen their capacity to make a
substantial contribution to the higher education resources of the
Nation.'' The TCU Title III program is specifically designed to address
the critical, unmet needs of their American Indian students and
communities, in order to effectively prepare them for the workforce of
the 21st Century. The TCUs urge the subcommittee to reject the
President's budget recommendation to eliminate discretionary funding
and appropriate $32.0 million in fiscal year 2009 for Title III-A
section 316, an increase of $8.8 million over fiscal year 2008 and
$32.0 million over the President's request. These funds will afford
these developing institutions the resources necessary to continue their
ongoing grant programs and address the needs of their historically
underserved students and communities. Additionally, we request that
report language be restated clarifying that funds not necessary to
support continuation grants or new planning or implementation grants
shall be used for facilities, renovation, and construction grants to
ensure TCUs will be able to operate in adequate and safe facilities.
The importance of Pell grants to TCU students cannot be overstated.
U.S. Department of Education figures show that the majority of TCU
students receive Pell grants, primarily because student income levels
are so low and our students have far less access to other sources of
financial aid than students at State-funded and other mainstream
institutions. 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 them gain access to quality
higher education, an essential step toward becoming active, productive
members of the workforce. The TCUs urge the subcommittee to fund this
critical grants program at the highest possible level.

B. Carl D. Perkins Career & Technical Education Act
Tribally-Controlled Postsecondary Vocational Institutions: Section
117 of the Perkins Act provides basic operating funds for two of our
member institutions: United Tribes Technical College in Bismarck, North
Dakota, and Navajo Technical College in Crownpoint, New Mexico. The
TCUs urge the subcommittee to reject the President's budget proposal to
eliminate funding for this program and to appropriate $8.5 million.
Native American Career and Technical Education Program.--The Native
American Career and Technical Education Program (NACTEP) under Sec. 116
of the Act reserves 1.25 percent of appropriated funding to support
Indian vocational programs. The TCUs strongly urge the subcommittee to
continue to support NACTEP, which is vital to the survival of
vocational education programs being offered at Tribal Colleges and
Universities.

C. Greater Support of Indian Education Programs
American Indian Adult and Basic Education (Office of Vocational and
Adult Education).--This program supports adult basic education programs
for American Indians offered by TCUs, State and local education
agencies, Indian tribes, institutions, and agencies. Despite a lack of
funding, TCUs must find a way to continue to provide basic adult
education classes for those American Indians that the present K-12
Indian education system has failed. Before many individuals can even
begin the course work needed to learn a productive skill, they first
must earn a GED or, in some cases, even learn to read. The number of
students in need of remedial education before embarking on their degree
programs is considerable at TCUs. There is a broad need for basic adult
educational programs and TCUs need adequate funding to support these
essential activities. TCUs respectfully request that the subcommittee
direct $5.0 million of the Adult Education State Grants appropriated
funds to make awards to TCUs to help meet the ever increasing demand
for basic adult education and remediation program services.
American Indian Teacher/Administrator Corps (Special Programs for
Indian Children).--American Indians are severely under represented in
the teaching and school administrator ranks nationally. These
competitive programs are designed to produce new American Indian
teachers and school administrators for schools serving American Indian
students. These grants support recruitment, training, and in-service
professional development programs for Indians to become effective
teachers and school administrators and in doing so become excellent
role models for Indian children. We believe that the TCUs are the ideal
catalysts for these two initiatives because of their current work in
this area and the existing articulation agreements they hold with 4-
year degree awarding institutions. The TCUs request that the
subcommittee support these two programs at $10.0 million and $5.0
million, respectively, to increase the number of qualified American
Indian teachers and school administrators in Indian Country.

DEPARTMENT OF HEALTH AND HUMAN SERVICES/ADMINISTRATION FOR CHILDREN &
FAMILIES/HEAD START

Tribal Colleges and Universities (TCU) Head Start Partnership
Program.--The TCU-Head Start Partnership has made a lasting investment
in our Indian communities by creating and enhancing associate degree
programs in Early Childhood Development and related fields. Graduates
of these programs help meet the degree mandate for all Head Start
program teachers. More importantly, this program has afforded American
Indian children Head Start programs of the highest quality. A clear
impediment to the ongoing success of this partnership program is the
erratic availability of discretionary funds made available for the TCU-
Head Start Partnership. In fiscal year 1999, the first year of the
program, some colleges were awarded 3-year grants, others 5-year
grants. In fiscal year 2002, no new grants were awarded. In fiscal year
2003, funding for eight new TCU grants was made available, but in
fiscal year 2004, only two new awards could be made because of the lack
of adequate funds. The President's fiscal year 2009 budget includes a
total request of $7,026,571,000 for Head Start Programs. The TCUs
request that the subcommittee direct the Head Start Bureau to designate
a minimum of $5.0 million, of the over $7.0 billion recommended in the
budget, for the TCU-Head Start Partnership program, to ensure that this
critical program can continue and expand so that all TCUs have the
opportunity to participate in the TCU-Head Start partnership program.

CONCLUSION

Tribal Colleges and Universities are providing access to higher
education opportunities to many thousands of American Indians and
essential community services and programs to many more. The modest
Federal investment in TCUs has already paid great dividends in terms of
employment, education, and economic development, and continuation of
this investment makes sound moral and fiscal sense. TCUs need your help
if they are to sustain and grow their programs and achieve their
missions to serve their students and communities.
Thank you again for this opportunity to present our funding
recommendations. We respectfully ask the Members of the subcommittee
for their continued support of the Nation's Tribal Colleges and
Universities and full consideration of our fiscal year 2009
appropriations needs and recommendations.
______

Prepared Statement of the American Liver Foundation

Mr. Chairman and members of the subcommittee, thank you for giving
the American Liver Foundation the opportunity to testify as the
subcommittee begins to consider funding priorities for fiscal year
2009. My name is Dr. James L. Boyer and I am the Chairman of the Board
of Directors of the American Liver Foundation (ALF), a national
voluntary health organization dedicated to the prevention, treatment
and cure of hepatitis and other liver diseases through research,
education and advocacy. I am also the Ensign Professor of Medicine and
Director of the Liver Center at Yale University School of Medicine.
ALF has 25 Chapters nationwide and provides information to 300,000
patients and families. Over 70,000 physicians, including primary care
practitioners and liver specialists and scientists also receive
information from ALF. The ALF Board of Directors is composed of
scientists, clinicians, patients and others who are directly affected
by liver diseases. Every year ALF handles over 100,000 requests for
information, helping patients and their families understand their
illnesses, informing them about available services, and showing them
that there are knowledgeable and concerned individuals to assist them
in every possible way.
Mr. Chairman, ALF joins the Ad Hoc Group for Medical Research
Funding, a coalition of some 300 patient and voluntary health groups,
medical and scientific societies, academic research organizations and
industry, in recommending $31.1 billion (6.5 percent increase) for the
National Institutes of Health in fiscal year 2009. The fiscal year 2009
Administration budget request for NIH is flat compared to fiscal year
2008 funding levels, which due to the effects of biomedical inflation,
translates to a cut. If the President's budget were implemented, this
funding level would mean NIH's ability to conduct and support life-
saving research will be cut by more than 11 percent in inflation-
adjusted dollars since fiscal year 2003.
While the ALF recognizes the demands on our Nation's resources, we
believe the ever-increasing health threats and expanding scientific
opportunities continue to justify higher funding levels than proposed
by the Administration. To ensure that NIH's momentum is not further
eroded, and to ensure the fight against diseases and disabilities that
affect millions of Americans can continue, ALF supports a minimum
increase of 6.5 percent for the NIH in fiscal year 2009 and a minimum
increase of a 6.5 percent for the National Institute for Diabetes and
Digestive and Kidney Diseases and for liver disease research across all
NIH Institutes.
In addition to the NIH, there are a number of programs within the
jurisdiction of the subcommittee that are important to ALF including
the Centers for Disease Control's Division of Viral Hepatitis and
HRSA's Division of Transplantation. Mr. Chairman, our specific
recommendations for these and other areas of interest are summarized in
a table at the end of this statement.

RECOGNIZING THE LEADERSHIP OF THE SUBCOMMITTEE

Mr. Chairman, ALF appreciates your leadership and the leadership of
this subcommittee in supporting NIH in a time of fiscal austerity. Your
leadership in supporting CDC and HRSA's Division of Transplantation are
also greatly recognized and appreciated. These programs are important
to our shared goals of improving the public health response to the
threats of hepatitis and liver disease and to increasing the rate of
organ donation. We applaud the Committee's leadership in making
progress in these important areas and to allocating increased funding
to these programs during periods of fiscal austerity.

RECOGNIZING THE LEADERSHIP OF THE NIH

Mr. Chairman, I would also like to take this opportunity to commend
the leadership of NIH, and especially the leadership of the National
Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) for
their strong support of liver disease research. In the summer of 2002,
a member of the House Labor-HHS Subcommittee, Congressman Dan Miller,
introduced a piece of legislation titled the Liver Disease Research
Enhancement Act. The legislation, reintroduced in the 110th Congress by
Congressmen Stephen Lynch and Peter King, was introduced after several
months of deliberation and consultation with the leadership of NIH,
with the intention of creating a center within NIDDK focused solely on
liver and liver-related diseases. This bill will streamline the study
and funding of liver disease research by creating a Liver Disease
Research Advisory Board that will include preeminent scientists at the
NIH, and from across the country to develop a Liver Disease Research
Action Plan to guide future NIH funding decisions and help the liver
research community prioritize research efforts. In addition the bill
provides new authorities necessary to help insure that the scientific
opportunities identified by the Liver Disease Research Action Plan are
adequately funded.
After the bill was first introduced, the NIH independently
implemented many of the provisions of this legislation, including the
establishment of a Liver Disease Branch and the creation of a Liver
Disease Research Action Plan, which the NIH continues to update each
year. The Research Action Plan is an important blueprint for the future
of liver disease research; however, ALF is concerned that without the
authorities included in the legislation, implementation of the plan
will proceed slowly. We recommend the Liver Research Enhancement Act to
the subcommittee as necessary steps needed to improve the rate of
scientific discovery thus leading to cures and better treatment for
liver disease.
We would also like to commend the leadership of the NIDDK on their
decision to host a consensus conference focused on best treatment
practices for individuals with hepatitis B. The growing number of
treatment options is encouraging and suggests a strong rationale for
conducting a consensus conference to provide state of the art treatment
guidelines for the practicing physician community.

FUNDING THE LIVER DISEASE RESEARCH ACTION PLAN

Mr. Chairman, in December 2004, the NIDDK released the Liver
Disease Research Action Plan outlining major research goals for the
various aspects of liver disease. Working with the leading scientific
experts in the field, the plan is organized into 16 chapters and
identifies numerous areas of research important to virtually every
aspect of liver disease, including: improving the success rate of
therapy of hepatitis C; developing noninvasive ways to measure liver
fibrosis; developing sensitive and specific means of screening
individuals at high risk for early hepatocellular carcinoma; developing
standardized and objective diagnostic criteria for major liver diseases
and their grading and staging; and decreasing the mortality rate from
liver disease. Each year, the plan is reviewed and updated. The ALF
urges the Committee to provide adequate funding and policy guidance to
NIH to urge continued implementation of the plan.

CDC'S DIVISION OF VIRAL HEPATITIS

ALF joins with the CDC Coalition, a nonpartisan coalition of more
than 100 groups, in supporting $7.4 billion for the Centers for Disease
Control and Prevention in fiscal year 2009. The CDC programs are
crucial to the health of millions of Americans, they are key to
maintaining a strong public health infrastructure, and are essential in
protecting us from threats to our health. At a time when the CDC is
facing unprecedented challenges and responsibilities ranging from
chronic disease prevention, eliminating health disparities,
bioterrorism preparedness, to combating the obesity epidemic the
administration's budget has cut the CDC's budget by $412 million. We
urge the committee to restore this cut and fund the CDC at $7.4
billion. Within that amount, we further request that the Committee
provide a $5 million increase for the Division of Viral Hepatitis.
The Division of Viral Hepatitis (DVH) is included in the National
Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention at the
CDC, and is responsible for the prevention and control of viral
hepatitis, a disease which impacts over 6 million Americans and often
leads to liver cancer and liver failure. The DVH provides the
scientific and programmatic foundation for the prevention, control and
elimination of hepatitis virus infections in the United States and also
assists the international public health community in these activities.
DVH works with State and local health departments to provide the
guidance and technical expertise needed to integrate hepatitis
prevention services such as hepatitis A and B vaccine, hepatitis B and
C counseling, and testing and referral to existing public health
programs serving individuals at high risk.
Mr. Chairman, ALF requests that an increase of $5 million, be
included to address the public health crisis of Hepatitis A, B & C and
the large growing HIV co-infection rates.

INCREASING THE SUPPLY OF ORGANS FOR DONATION

As the subcommittee knows, even with advances in the use of living
liver donors, the increase in the demand for livers needed for
transplantation will continue to exceed the number available. The need
to increase the rate of organ donation is critical. Each day
approximately 78 people receive an organ transplant, but another 18
people die because organ demand far outweighs the supply and the gap
continues to widen. For example, in 2007, while 5,940 liver transplants
were performed, there were over 17,122 individuals on the list waiting
for liver transplantations and about 1,421 people died due to the lack
of a donor liver. Despite this demonstrated need, the Division of
Transplantation has received cuts or level funding over the past four
fiscal years.
Recognizing the importance of this issue, Congress passed, and the
President signed, the Organ Donation and Recovery Improvement Act of
2004 (Public Law 108-216) authorizing an increase of $25 million for
organ donation activities in the first year, and such sums as necessary
in following years, and yet, no additional funding has been provided to
implement this legislation. To address these needs, ALF recommends that
the Division of Transplantation receive a $2 million increase in fiscal
year 2009.

SUMMARY AND CONCLUSION

Mr. Chairman, again we wish to thank the subcommittee for its past
leadership. Significant progress has been made in developing better
treatments and cures for the diseases that affects mankind due to your
leadership and the leadership of your colleagues on this subcommittee.
Significant progress has also similarly been made in the fight against
liver disease. For fiscal year 2009 we recommend a 6.5 percent,
increase for NIH above the level of the fiscal year 2008 funding
levels, with the level of liver disease research also increased by at
least 6.5 percent. We also urge a $5 million increase for CDC to
strengthen the public health response to hepatitis and liver disease
and a $2 million increase to HRSA's Division of Transplantation
necessary to increase the rate of organ donation. Mr. Chairman, if this
country is to maintain its leadership role in health maintenance,
disease prevention, and the curing of diseases, adequate funding for
NIH, CDC and HRSA is paramount. The ALF appreciates the opportunity to
provide testimony to you on behalf of our constituents and yours.

ALF RECOMMENDATIONS FOR FISCAL YEAR 2009 FUNDING

NIH and the Liver Disease Research Action Plan
--6.5 percent increase for NIH overall and 6.5 percent for the
National Institute of Diabetes and Digestive and Kidney
Diseases;
--+$25 million to implement the Liver Research Action Plan
CDC: National Hepatitis C Prevention Strategy, Public Health
Information, HAV & HBV Vaccinations
--+$5 million to support expansion of CDC's National Hepatitis C
Prevention program;
--+$1 million to increase the public health information regarding
liver diseases.
HRSA: Expanding the supply or organs
--+$2 million to start funding the Organ Donation and Recovery Act
provisions.
______

Prepared Statement of the American Lung Association

SUMMARY.--FUNDING RECOMMENDATIONS
[In millions of dollars]
------------------------------------------------------------------------
Amount
------------------------------------------------------------------------
National Institutes of Health........................ 31,129
National Heart, Lung, and Blood Institute........ 3,114
National Cancer Institute........................ 5,117
National Institute of Allergy and Infectious 4,675
Disease.........................................
National Institute of Environmental Health 683
Sciences........................................
National Institute of Nursing Research........... 146
Fogarty International Center..................... 70
Centers for Disease Control and Prevention........... 10,700
Chronic Disease Prevention & Health Promotion: 6
COPD Activities.................................
National Institute for Occupational Safety and 285
Health..........................................
Office on Smoking and Health..................... 145
Environmental Health: Asthma Activities.......... 70
Tuberculosis Control Programs.................... 300
Influenza Pandemic................................... 1,169
------------------------------------------------------------------------

The American Lung Association is pleased to present our
recommendations to the Labor Health and Human Services and Education
Appropriations Subcommittee. These programs will improve and extend the
lives of millions of Americans who suffer from lung disease.
The American Lung Association is one of the oldest voluntary health
organizations in the United States, with a National Office and local
associations around the country. Founded in 1904 to fight tuberculosis,
the American Lung Association today fights lung disease in all its
forms.

THE TOLL OF LUNG DISEASE

Each year, close to 400,000 Americans die of lung disease. Lung
disease is America's number three killer, responsible for one in every
six deaths. More than 35 million Americans suffer from a chronic lung
disease. Each year lung disease costs the economy an estimated $157.8
billion. Lung diseases include: asthma, chronic obstructive pulmonary
disease, lung cancer, tuberculosis, pneumonia, influenza, sleep
disordered breathing, pediatric lung disorders, occupational lung
disease and sarcoidosis.

CHRONIC OBSTRUCTIVE PULMONARY DISEASE

Chronic Obstructive Pulmonary Disease, or COPD, is a growing health
problem. Yet, it remains relatively unknown to most Americans. COPD
refers to a group of largely preventable diseases, including emphysema
and chronic bronchitis that generally gradually limit the flow of air
in the body. COPD is the fourth leading cause of death in the United
States and worldwide. In 2007, the annual cost to the nation for COPD
was $42.6 billion. This includes $26.7 billion in direct health care
expenditures, $8.0 billion in indirect morbidity costs and $7.9 billion
in indirect mortality costs. Medicare expenses for COPD beneficiaries
were nearly 2.5 times that of the expenditures for all other patients.
It has been estimated that 12.6 million patients have been
diagnosed with some form of COPD and as many as 24 million adults may
suffer from its consequences. In 2004, 118,171 people in the U.S. died
of COPD. Women have exceeded men in the number of deaths attributable
to COPD since 2000. Over the past 30 years, the death rate due to COPD
has doubled while the death rates for heart disease, cancer and stroke
have decreased by over 50 percent.
Today, COPD is treatable but not curable. Fortunately, promising
research is on the horizon for COPD patients. Research on the genetic
susceptibility underlying COPD is making progress. Research is also
showing promise for reversing the damage to lung tissue caused by COPD.
Despite these promising research leads, the American Lung Association
believes that research resources committed to COPD are not commensurate
with the impact COPD has on the United States and the World.
The American Lung Association strongly supports the establishment
of a national COPD program within CDC's National Center for Chronic
Disease Prevention and Health Promotion with a funding level of $6
million for fiscal year 2009 to expand surveillance activities and
create a comprehensive national action plan for combating COPD. This
must occur if the nation is to begin to address this critical public
health problem.
The American Lung Association strongly recommends that the NIH and
other Federal research programs commit additional resources to COPD
research programs. We support increasing the National Heart, Lung and
Blood Institute budget to $3,114 billion.

TOBACCO USE

Tobacco use is the leading preventable cause of death in the United
States, killing more than 438,000 people every year. Smoking is
responsible for one in five U.S. deaths. The direct health care and
lost productivity costs of tobacco-caused disease and disability are
also staggering, an estimated $167 billion each year.
The CDC's Office on Smoking and Health provides significant
technical assistance to States to develop comprehensive and effective
tobacco prevention programs, in addition to providing a small, yet
essential, amount of Federal assistance directly to State tobacco
control and prevention programs. Funds for tobacco prevention at CDC
also are used to maintain comprehensive information on smoking and
health and to support ongoing research on tobacco-related issues.
We believe Congress should fund the type of youth tobacco
prevention programs that science tells us are essential to counter the
impact of tobacco company marketing to our kids. The American Lung
Association strongly supports a minimum level of $145 million in fiscal
year 2009 funding for the Office on Smoking and Health.

ASTHMA

Asthma is a chronic lung disease in which the bronchial tubes
become swollen and narrowed, preventing air from getting into or out of
the lung. An estimated 34.1 million Americans have ever been diagnosed
with asthma by a health professional. Approximately 22.9 million
Americans currently have asthma, of which 12.4 million had an asthma
attack in 2006. Asthma prevalence rates are almost 24 percent higher
among African Americans than whites. Studies also suggest that Puerto
Ricans have higher asthma prevalence rates and age-adjusted death rates
than all other Hispanic subgroups.
Asthma is expensive. Asthma incurs an estimated annual economic
cost of $14.7 billion to our nation. Asthma is the third leading cause
of hospitalization among children under the age of 15. It is also the
number one cause of school absences attributed to chronic conditions.
The Federal response to asthma has three components: research, programs
and planning. We are making progress on all three fronts but more must
be done:

Asthma Research
Researchers are developing better ways to treat and manage chronic
asthma. The NHLBI has shown that using corticosteroids to treat
children with mild to moderate asthma is safe and effective. Genetic
research is also providing insights into asthma. Researchers in the
NHLBI-supported Asthma Clinical Research Network have discovered that a
genetic variation determines how well asthma patients will respond to
the most common asthma medication, inhaled beta-agonists. This
discovery will help physicians better target the drugs they proscribe.

Asthma Programs
Last year, Congress provided approximately $31.3 million for the
CDC to conduct asthma programs. The American Lung Association
recommends that CDC be provided $70 million in fiscal year 2009 to
expand its asthma programs. This funding includes State asthma planning
grants, which leverage small amounts of funding into more comprehensive
State programs.

Asthma Surveillance
In addition to public education programs, the CDC has been piloting
programs to determine how to establish a nationwide health-tracking
system. Congress needs to increase funding to create a nationwide
health-tracking system, based on the localized pilots that are underway
now.

LUNG CANCER

An estimated 351,344 Americans are living with lung cancer. During
2007, an estimated 213,380 new cases of lung cancer will be diagnosed.
Also, 160,390 Americans will die from lung cancer. Survival rates for
lung cancer tend to be much lower than those of most other cancers. Men
have higher rates of lung cancer than women. However, over the past 30
years, the lung cancer age-adjusted incidence rate has decreased 9
percent in males compared to an increase of 143 percent in females.
Further, African Americans are more likely to develop and die from lung
cancer than persons of any other racial group.
Given the magnitude of lung cancer and the enormity of the death
toll, the American Lung Association strongly recommends that the NIH
and other Federal research programs commit additional resources to lung
cancer research programs. We support increasing the National Cancer
Institute budget to $5.117 billion.

INFLUENZA

Influenza is a highly contagious viral infection and one of the
most severe illnesses of the winter season. It is responsible for an
average of 200,000 hospitalizations and 36,000 deaths each year.
Further, the emerging threat of a pandemic influenza is looming. Public
health experts warn that over half a million Americans could die and
over 2.3 million could be hospitalized if a moderately severe strain of
a pandemic flu virus hits the United States. To prepare for a potential
pandemic, the American Lung Association supports funding the Federal
Pandemic Influenza Plan at the recommended level of $1.169 billion.

TUBERCULOSIS

Tuberculosis primarily affects the lungs but can also affect other
parts of the body. There are an estimated 10 million to 15 million
Americans who carry latent TB infection. Each has the potential to
develop active TB in the future. About 10 percent of these individuals
will develop active TB disease at some point in their lives. In 2007,
there were 13,293 cases of active TB reported in the United States
While declining overall TB rates are good news, the emergence and
spread of multi-drug resistant TB pose a significant threat to the
public health of our nation. Continued support is needed if the United
States is going to continue progress toward the elimination of TB. We
request that Congress increase funding for tuberculosis programs to
$300 million for fiscal year 2009.
The NIH also has a prominent role to play in the elimination of TB.
Currently there is no highly effective vaccine to prevent TB
transmission. However, the recent sequencing of the TB genome and other
research advances has put the goal of an effective TB vaccine within
reach. In addition, the American Lung Association encourages the
subcommittee to fully fund the TB vaccine blueprint development effort
at the NIAID.

Fogarty International Center TB Training Programs
The Fogarty International Center at NIH provides training grants to
U.S. universities to teach AIDS treatment and research techniques to
international physicians and researchers. Because of the link between
AIDS and TB infection, FIC has created supplemental TB training grants
for these institutions to train international health care professionals
in the area of TB treatment and research. The American Lung Association
recommends Congress provide $70 million for FIC to expand the TB
training grant program from a supplemental grant to an open competition
grant.

ENVIRONMENTAL HEALTH

The National Institute of Environmental Health Sciences funds vital
research on the impact of environmental influence on disease. The
American Lung Association supports increasing the appropriation from
this subcommittee to $680 million.

RESEARCHING AND PREVENTING OCCUPATIONAL LUNG DISEASE

The American Lung Association recommends that the subcommittee
provide $285 million for the National Institute for Occupational Safety
and Health (NIOSH) at the CDC.

CONCLUSION

In conclusion, Mr. Chairman, lung disease is a continuing, growing
problem in the United States. It is America's number three killer,
responsible for one in seven deaths. The lung disease death rate
continues to climb. Mr. Chairman, the level of support this committee
approves for lung disease programs should reflect the urgency
illustrated by these numbers.
______

Prepared Statement of the American National Red Cross and the United
Nations Foundation

Chairman Harkin, Senator Specter, and members of the subcommittee,
the American Red Cross and the United Nations Foundation appreciate the
opportunity to submit testimony in support of measles control
activities of the U.S. Centers for Disease Control and Prevention
(CDC). The American Red Cross and the United Nations Foundation
recognize the leadership that Congress has shown in funding CDC for
these essential activities.
In 2001, CDC--along with the American Red Cross, the United Nations
Foundation, the World Health Organization, and UNICEF--became one of
the spearheading partners of the Measles Initiative, a partnership
committed to reducing measles deaths globally. The current U.N. goal is
to reduce measles deaths by 90 percent by 2010 compared to 2000
estimates. The Measles Initiative is committed to reaching this goal by
proving technical and financial support to governments and communities
worldwide.
The Measles Initiative has achieved ``spectacular'' \1\ results by
supporting the vaccination of more than 500 million children. Largely
due to the Measles Initiative, global measles mortality dropped 68
percent, from an estimated 757,000 deaths in 2000 to 242,000 in 2006.
During this same period, measles deaths in Africa fell by 91 percent,
from 396,000 to 36,000.
---------------------------------------------------------------------------
\1\ The Lancet, Volume 8, page 13 (January 2008).
---------------------------------------------------------------------------
Working closely with host governments, the Measles Initiative has
been the main international supporter of mass measles immunization
campaigns since 2001. The Initiative mobilized more than $635 million
and provided technical support in more than 50 developing countries on
vaccination campaigns, surveillance and improving routine immunization
services. During the period 2001-2006, the donor investment of 429
million USD resulted in the prevention of 2.3 million deaths, i.e. 184
USD per death averted, making measles mortality reduction one of the
most cost-effective public health interventions.
Nearly all the measles vaccination campaigns have been able to
reach more than 90 percent of their target populations. Countries
recognize the opportunities that measles vaccination campaigns provide
in accessing mothers and young children, and ``integrating'' the
campaigns with other life-saving health interventions has become the
norm. In addition to measles vaccine, Vitamin A (crucial for preventing
blindness in under nourished children), de-worming medicine, and
insecticide-treated bed nets (ITNs) for malaria prevention are
distributed during vaccination campaigns. The scale of these
distributions is immense. For example, more than 31 million ITNs were
distributed in vaccination campaigns in the last few years. The
delivery of multiple child health interventions during a single
campaign is far less expensive than delivering the interventions
separately, and this strategy increases the potential positive impact
on children's health from a single campaign.
Countries are well positioned to achieve the 2010 goal and to take
a bold step towards achievement of the 2015 Millennium Development Goal
#4 of reducing under-five child mortality. The Measles Initiative is
now supporting the full implementation of measles mortality reduction
activities in South Asia, where the measles burden remains high. In
addition, The Initiative is continuing efforts in Africa to sustain and
improve on the current success. Achieving these goals will require the
continued and expanded support of CDC for the purchase of vaccine and
the provision of technical expertise.
By controlling measles cases in other countries, U.S. children are
also being protected from the disease. A major resurgence of measles
occurred in the United States between 1989 and 1991, with more than
55,000 cases reported. This resurgence was particularly severe,
accounting for more than 11,000 hospitalizations and 123 deaths. Since
then, measles control measures in the United States have been
strengthened and endemic transmission of measles cases have been
eliminated here since 2000. However, importations of measles cases into
this country continue to occur each year.

THE ROLE OF CDC IN GLOBAL MEASLES MORTALITY REDUCTION

Since fiscal year 2001, Congress has provided approximately $42
million annually in funding to CDC for global measles control
activities. These funds were used toward the purchase of more than 400
million doses of measles vaccine for use in large-scale measles
vaccination campaigns in more than 50 countries in Africa and Asia,,
and for the provision of technical support to Ministries of Health in
those countries. Specifically, this technical support includes:
--Planning, monitoring, and evaluating large-scale measles
vaccination campaigns;
--Conducting epidemiological investigations and laboratory
surveillance of measles outbreaks; and
--Conducting operations research to guide cost-effective and high
quality measles control programs.
In addition, CDC epidemiologists and public health specialists have
worked closely with WHO, UNICEF, the United Nations Foundation, and the
American Red Cross to strengthen measles control programs at global and
regional levels.
While it is not possible to precisely quantify the impact of CDC's
financial and technical support to the Measles Initiative, there is no
doubt that CDC's support--made possible by the funding appropriated by
Congress--was essential in helping achieve the sharp reduction in
measles deaths in just 6 years.
The American Red Cross and the United Nations Foundation would like
to acknowledge the leadership and work provided by CDC and recognize
that CDC brings much more to the table than just financial resources.
The Measles Initiative is fortunate in having a partner that provides
critical personnel and technical support for vaccination campaigns and
in response to disease outbreaks. CDC personnel have routinely
demonstrated their ability to work well with other organizations and
provide solutions to complex problems that help critical work get done
faster and more efficiently.
In fiscal year 2008, Congress has appropriated approximately $41.8
million to fund CDC for global measles control activities. The American
Red Cross and the United Nations Foundation thank Congress for the
financial support that has been provided to CDC in the past and this
year. We respectfully request a total of $51.8 million for fiscal year
2009 funding for CDC's measles control activities so that the gains
made to date can continue and the 2010 goal of a 90 percent reduction
in measles deaths can be achieved.
The additional funds we are seeking for CDC are critical for:
--Sustaining the great progress in measles mortality reduction in
Africa by strengthening measles surveillance and strengthening
the delivery of measles vaccine through routine immunization
services to protect new birth cohorts;
--Conducting large-scale measles vaccination campaigns in South Asia,
especially in India, thus protecting millions of children;
--Conducting nationwide measles vaccination campaigns in countries,
such as the Philippines, lacking access to traditional and new
funding sources.
Your commitment has brought us unprecedented victories in reducing
measles mortality around the world. Measles can cause severe
complications and death. It's important to note that measles control
globally also protects children in the United States from the disease.
The Americas as a region eliminated endemic measles in 2002, but each
year countries in the region have outbreaks of imported measles cases.
These outbreaks cause needless suffering and accrue public health costs
which in the United States are upwards of $150,000 to respond to each
case. Therefore, your continued support for this initiative helps
prevent children from suffering from this preventable disease both
abroad and in the United States.
Thank you for the opportunity to submit testimony.
______

Prepared Statement of the Americans for Nursing Shortage Relief

The undersigned organizations of the ANSR Alliance greatly
appreciate the opportunity to submit written testimony regarding fiscal
year 2009 appropriations for Title VIII--Nursing Workforce Development
Programs. The ANSR Alliance is comprised of 51 national nursing
organizations that united in 2001 to identify and promote creative
strategies for addressing the nursing and nurse faculty shortages,
including passage of the Nurse Reinvestment Act of 2002.
The ANSR Alliance stands ready to work with lawmakers to advance
programs and policy that will sustain and strengthen our Nation's
nursing workforce. To ensure that our Nation has a sufficient and
adequately prepared nursing workforce to provide quality care to all
well into the 21st century, ANSR urges Congress to:
--Appropriate at least $200 million in funding for Nursing Workforce
Development Programs under Title VIII of the Public Health
Service Act at the Health Resources and Services Administration
(HRSA) in fiscal year 2009.
--Restore the Advanced Education Nursing program (Sec. 811) and fund
it at a level on par with the proposed fiscal year 2009
increase for the other Title VIII programs.

NURSING SHORTAGE

Nursing is one of the largest health care professions with an
estimated 2.9 million licensed RNs in the United States.\1\ Nurses work
in a variety of settings, including public health, long-term care, and
hospitals. Advanced practice nurses (nurse practitioners, nurse
midwives, clinical nurse specialists, and certified registered nurse
anesthetists) practice in numerous settings, including primary care,
hospitals, and surgical care facilities. Approximately three out of
five jobs are in hospitals.\2\ A Federal report published in 2004
estimates that by 2020 the national nurse shortage will increase to
more than 1 million full-time nurse positions. According to these
projections, which are based on the current rate of nurses entering the
profession, only 64 percent of projected demand will be met.\3\ A 2007
study that uses different assumptions published in Health Affairs has
adjusted the demand projection to 340,000 nurses by 2020.\4\ In either
scenario, the shortage presents an extremely serious challenge to
health care access and quality patient care. Even considering only the
smaller projection of vacancies, this shortage still results in a
frightening gap in nursing service, essentially three times the 2001
nursing shortage.
---------------------------------------------------------------------------
\1\ Steiger, D.M., Bausch, S., Johnson, B., Peterson, A. (2006) The
Registered Nurse Population: Findings from the March 2004 National
Sample Survey of Registered Nurses. Health Resources and Services
Administration, U.S. Department of Health and Human Services.
\2\ Bureau of Labor Statistics, U.S. Department of Labor.
Occupational Outlook Handbook, 2006-2007 Edition, Registered Nurses.
\3\ Health Resources and Services Administration. (2004) What is
Behind HRSA's Projected Supply, Demand, and Shortage of Registered
Nurses?
\4\ Auerbach, D.I., Buerhaus, P.I., & Staiger, D.O. (2207). Better
late than never: Workforce supply implications of later entry into
nursing. Health Affairs. 26(10: 178-185).
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DESPERATE NEED FOR NURSE FACULTY

Nursing vacancies exist throughout the entire health care system,
including long-term care, home care, and public health. Even the
Department of Veterans Affairs, the largest sole employer of RNs in the
United States, has a nursing vacancy rate of 10 percent. In 2005, the
American Hospital Association reported that hospitals needed 118,000
more RNs to fill immediate vacancies, and that this 8.5 percent vacancy
rate is hampering the hospitals' ability to provide emergency care.\5\
Government estimates indicate that this situation only promises to
worsen due to an insufficient supply of individuals matriculating in
nursing schools, an aging existing workforce, and the inadequate
availability of nursing faculty to educate and train the next
generation of nurses. At the exact same time that the nursing shortage
is expected to worsen, the baby boom generation is aging and the number
of individuals with serious, life-threatening, and chronic conditions
requiring nursing care will increase. Consequently, more must be done
today by the government to help ensure an adequate nursing workforce
for the patients of today and tomorrow.
---------------------------------------------------------------------------
\5\ American Hospital Association. (2005). Prepared to care: The
24/7 Role of American's full-service Hospitals.
---------------------------------------------------------------------------
A particular focus on securing and retaining adequate numbers of
faculty is essential to ensure that all individuals interested in--and
qualified for--nursing school can matriculate in the year they are
accepted. In the 2005-2006 academic year, research reported by the
National League for Nursing found that schools of nursing rejected more
than 88,000 qualified applications because of shortages of faculty,
classroom space, and clinical placement for students.\6\ Aside from
having a limited number of faculty, nursing programs struggle to
provide space for clinical laboratories and to secure a sufficient
number of clinical training sites at health care facilities.
---------------------------------------------------------------------------
\6\ National League for Nursing. (2008). Nursing Data Review
Academic Year 2005-2006, Executive summary.
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The current and deepening nurse faculty shortfall is a critical
reason that the Advanced Education Nursing line item in the Title VIII
programs must be fully funded. This program supported 13,877 graduate
nursing students in fiscal year 2006. The students that are supported
by this funding are the pool of future faculty for the nursing
profession. Whether supporting students in clinical education or as
faculty in schools of nursing, it is essential that advanced education
nursing funding be restored.

NURSING SUPPLY IMPACTS AMERICA'S EMERGENCY PREPAREDNESS

The National Center for Health Workforce Analysis at HRSA's Bureau
of Health Professions reports that the nursing shortage makes it
challenging for the health care sector to meet current service needs.
Nursing shortfalls exacerbating capacity insufficiencies throughout the
health care system have ripple effects, for example, seen in the
problems encountered by most communities' day-to-day emergency care
services. Facing a pandemic flu or other natural or man-made disaster
of significant proportions makes the nursing shortage an even greater
national concern, as well as an essential part of national preparedness
and response planning.
Nurses play a critical role as front-line, first-responders. When
word of the devastation caused by Hurricanes Katrina and Rita reached
nurses across the country, they immediately volunteered in American Red
Cross shelters, medical clinics, and hospitals throughout that
widespread region. Nurses and advanced practice registered nurses
(e.g., nurse midwives, nurse practitioners, clinical nurse specialists,
and certified registered nurse anesthetists) are particularly critical
national resources in an emergency, able to provide clinical nursing
care as well as primary care. During Katrina and Rita, nurse midwives
delivered babies in airplane hangars, and nurses trained in geriatric
care assisted in caring for those traumatized by their evacuation from
the comforts of their homes, assisted living facilities, or nursing
homes. Nurse practitioners diligently staffed temporary and permanent
health care clinics to provide needed primary care to hurricane
victims. Many nurses contributed not just through their clinical
expertise, but also by offering psychological support as they listened
to survivors recount their stories of pain and tragedy.
These stories seem particularly relevant in demonstrating the
essential assistance nurses provide during tragedies, and reinforce the
need to ensure an adequate supply of all types of nurses. Unless steps
are taken now, the Nation's ability to respond to disasters will be
further hindered by the growing nursing shortage. An investment in the
nursing workforce is a reasonable and cost-effective investment toward
rebuilding the public health infrastructure and increasing our Nation's
health care readiness and emergency response capabilities.

FUNDING REALITY

Enacted in 2002, the Nurse Reinvestment Act (Public Law 107-205)
addressed new and expanded initiatives, including loan forgiveness,
scholarships, career ladder opportunities, and public service
announcements to advance nursing as a career. Despite the enactment of
this critical measure, HRSA fails to have the resources necessary to
meet the current and growing demands for our Nation's nursing
workforce. The President's proposed budget for fiscal year 2009 reduces
overall funding of Title VIII by $46.1 million, a 30 percent decrease
compared to fiscal year 2008. This cut is achieved by zeroing out
funding for ``Advanced Education Nursing.'' This funding cut, if
implemented, will further diminish training and potentially jeopardizes
the delivery of health care. Funding of all of the Title VIII programs
make a difference. For example:
--fiscal year 2006 Nursing Education Loan Repayment Program: Of the
4,222 applicants, 615 awards were made. This translates to 14.6
percent of applicants receiving awards.
--fiscal year 2007 Nursing Education Loan Repayment Program: Whereas
last fiscal year, only 12 percent of the 4,845 nursing student
applications reviewed were awarded loans in this program (i.e.,
586 applicant awards).
The ANSR Alliance requests that the Subcommittee provide a minimum
of $200 million in fiscal year 2009 to fund the Title VIII--Nursing
Workforce Development Programs. We also urge the restoration of the
Advanced Education Nursing program (Sec. 811) funded at a level on par
with the proposed fiscal year 2009 increase for the other Title VIII
programs.
This funding can be used to restore the Advanced Education Nursing
program and fund a higher rate of Nurse Education Loan Repayment and
Nursing Scholarship applications, as well as implement other essential
endeavors to sustain and boost our Nation's nursing workforce. We thank
you for considering our request.

SUMMARY
----------------------------------------------------------------------------------------------------------------
President's ANSR Alliance
Programmatic area Final fiscal year budget fiscal fiscal year 2009
2008 year 2009 request
----------------------------------------------------------------------------------------------------------------
Title VIII--Nursing Workforce Development Programs at $156,046,000 $109,853,000 $200,000,000
HRSA..................................................
----------------------------------------------------------------------------------------------------------------

Academy of Medical-Surgical Nurses, American Academy of Ambulatory
Care Nursing, American Academy of Nurse Practitioners, American
Association of Critical-Care Nurses, American Association of Nurse
Anesthetists, American Association of Nurse Assessment Coordinators,
American Association of Nurse Executives, American Association of
Occupational Health Nurses, Inc., American College of Nurse
Practitioners, American Society of PeriAnesthesia Nurses, American
Society of Plastic Surgical Nurses, Association of periOperative
Registered Nurses, Association of Rehabilitation Nurses, Association of
Women's Health, Obstetric and Neonatal Nurses, Emergency Nurses
Association, Infusion Nurses Society, International Society of Nurses
in Genetics, National Association of Clinical Nurse Specialists,
National Association of Neonatal Nurses, National Association of Nurse
Massage Therapists, National Association of Nurse Practitioners in
Women's Health, National Association of Orthopaedic Nurses, National
Association of Pediatric Nurse Practitioners, National Association of
Registered Nurse First Assistants, National Black Nurses Association,
National Conference of Gerontological Nurse Practitioners, National
Council of State Boards of Nursing, National Gerontological Nursing
Association, National League for Nursing, National Nursing Centers
Consortium, National Organization for Associate Degree Nursing,
National Student Nurses' Association, Oncology Nursing Society, RN
First Assistants Policy & Advocacy Coalition, Society of Trauma Nurses,
Society of Urologic Nurses and Associates, and Wound, Ostomy and
Continence Nurses Society.
______

Prepared Statement of the American Occupational Therapy Association

Mr. Chairman and members of the subcommittee, thank you for giving
the American Occupational Therapy Association (AOTA) the opportunity to
testify as the subcommittee begins to consider funding priorities for
fiscal year 2009. My name is Fred Somers and I am the executive
director of the American Occupational Therapy Association, a nationally
recognized professional association of more than 35,000 occupational
therapists, occupational therapy assistants, and students of
occupational therapy. AOTA has affiliate programs in all 50 States.

ABOUT OCCUPATIONAL THERAPY

Occupational therapy addresses the activity limitations of people
experiencing health problems such as stroke, spinal cord injuries,
cancer, congenital conditions, developmental disabilities, and mental
illness. With interventions to develop and restore skills that are
essential for independent functioning, health, well-being, and
participation in society therapy interventions are available for people
of all ages and occur in a wide range of settings including schools,
hospitals, skilled nursing facilities, home health, outpatient
rehabilitation clinics, psychiatric facilities, and community health
programs. Occupational therapy programs promote healthy lifestyles for
individuals who are at risk for health conditions and prevent secondary
problems associated with chronic conditions or disabilities. The
outcome of occupational therapy promotes independence in individuals
who may otherwise require institutionalization or other long-term care
and enables people with disabilities to be productive and contributing
members of society. Lower health care costs and improved quality of
life for individuals, families, and caregivers are also evident
byproducts of occupational therapy services.

RECOGNIZING THE LEADERSHIP OF THE SUBCOMMITTEE

AOTA's testimony is in support of four major programs under the
subcommittee's jurisdiction: the Center for Disease Control and
Prevention, especially the Center on Injury Control and Prevention's
National Falls Prevention Program; the National Institutes of Health;
the Health Resources and Services Administration's Health Professions
Programs; and the administration on Aging. Mr. Chairman, our specific
recommendations for these and other areas of interest are summarized in
a table at the end of this statement.
Mr. Chairman, AOTA appreciates your leadership and the leadership
of this subcommittee in supporting NIH in a time of fiscal austerity.
Your leadership in supporting all of the programs mentioned in our
statement are also greatly recognized and appreciated. These programs
are important to our shared goals of improving the health and well
being of the Nation. We applaud the subcommittee's leadership in
addressing the needs of all of the programs under the jurisdiction of
this subcommittee during this time of fiscal constraints.

CENTERS FOR DISEASE CONTROL AND PREVENTION

AOTA joins with the CDC Coalition, a nonpartisan coalition of more
than 100 groups, in supporting $7.4 billion for the Centers for Disease
Control and Prevention in fiscal year 2009. The CDC programs are
crucial to the health of millions of Americans, they are key to
maintaining a strong public health infrastructure, and are essential in
protecting us from threats to our health. At a time when the CDC is
faces with unprecedented challenges and responsibilities ranging from
chronic disease prevention, eliminating health disparities,
bioterrorism preparedness, to combating the obesity epidemic the
administration's budget has cut the CDC's budget by $412 million. We
urge the committee to restore this cut and fund the CDC at $7.4
billion. Within that amount, we further request that the committee
provide a $20.7 million increase for the Falls Prevention Program in
the Center for Injury Prevention and Control.
Mr. Chairman, AOTA applauds the CDC's Center for Injury Prevention
and Control's initiative of preventing falls among older adults. Falls
are a leading cause of mortality among adults age 65 and older; one of
every three older Americans falls each year, and about 30 percent of
those who fall require medical treatment. In 2005, in the United
States, more than 16,000 older adults died from falls, approximately
1.8 million were treated in hospital emergency departments for
unintentional fall-related injuries, and more than 430,000 of those
were subsequently hospitalized. Falls and fall-related injuries
represent an enormous burden to individuals, society, and to our health
care system. CDC reports that the mortality rate from falls among older
Americans has increased 39 percent between 1999 and 2005. Furthermore,
a recent analysis by CDC determined that in 2000, among adults aged 65
and older, direct medical costs totaled $19.2 billion for nonfatal
fall-related injuries.
Occupational therapy evaluates and treats many older adults who are
at risks for falls. Both prevention and rehabilitation programs are
available as part of occupational therapy services Occupational therapy
addresses the physical and sensory impairments of aging, eliminates
environmental barriers by promoting ``universal design'' and recommends
safety practices in people's homes. But occupational therapy can also
deal with the fear of falling, which contributes to isolation and
seriously limits many older adults' participation in full community
life.
CDC's ability to reduce the rate of falls among older Americans is
substantially leveraged and increased by collaboration with States and
organizations, such as Area Aging Agencies, and other partners with
special access and expertise. AOTA, for example, with 35,000 national
members and affiliates in all 50 States, we believe, is an ideal
partner for effective program collaboration. In order to enhance CDC's
outreach and collaboration with appropriate organizations, AOTA
recommends a $20.7 million be appropriated to the CDC for elder falls
prevention.

THE NATIONAL INSTITUTES OF HEALTH

Mr. Chairman, for the National Institutes of Health in fiscal year
2009, we recommend an increase of $1.9 billion over the fiscal year
2008 funding level. AOTA joins the Ad Hoc Group for Medical Research
Funding, a coalition of some 300 patient and voluntary health groups,
medical and scientific societies, academic research organizations and
industry in making this recommendation. The administration's fiscal
year 2009 request would provide $29.2 billion for NIH, representing the
sixth consecutive year that the NIH budget has failed to keep pace with
biomedical inflation. In the 5 years through 2008, a series of nominal
increases and cuts has amounted to flat funding for NIH, and NIH has
lost approximately 11 percent in purchasing power due to inflation. If
the President's fiscal year 2009 request becomes law, NIH will have
lost one-seventh of its purchasing power due to inflation. Furthermore,
we urge the subcommittee to provide a 6.5 percent base adjustment for
medical rehabilitation research across all Institutes and Centers.
The National Center for Medical Rehabilitation Research (NCMRR),
within NICHD, provides important leadership within the NIH for the 15
NIH Institutes and Centers which fund medical rehabilitation research.
For fiscal year 2009 the NIH projects that it will spend $344 million
for medical rehabilitation research, which is the same as the fiscal
year 2007 actual NIH expenditure for this category of programs. AOTA
recommends that these programs be increased to allow for a heightened
focus on institutional and career development awards aimed at
increasing the applicant success rate of the several under-represented
health professions that contribute significantly to the field, such as
occupational therapists.
The National Institute for Neurological Disorders and Stroke
(NINDS) is providing important leadership in efforts to develop a
consensus rehabilitation treatment protocol for stoke victims that will
help insure the fullest possible recovery. AOTA strongly supports NINDS
leadership to convene a Scientific Workshop to indentify the scientific
questions that must be answered before such a consensus rehabilitation
treatment protocol can be developed and we would urge the committee to
support this effort as well.
The Institute of Medicine report, Enabling America: Assessing the
Role of Rehabilitation Science and Engineering, highlighted the
national need for research advances to improve the effectiveness of
rehabilitation services and the practices for promoting the health of
people with disabilities. The incidence and prevalence of people with
disabilities continue to mount in parallel with dramatic increases in
medicine's ability to prevent deaths due to injury, disease, and
conditions associated with aging. An estimated 49 million Americans,
about 1 out of every 7, have disabling conditions so severe that they
are unable to carry out the major activities of their age group, such
as attending school, working, or providing self-care. Occupational
therapy, as part of a medical rehabilitation team, provides the means
for reducing the effects and societal costs of disability.

HRSA HEALTH PROFESSIONS PROGRAM

The AOTA urges the restoration of the funding reductions proposed
by the Administration to HRSA's Health Professions programs. Many of
these programs, such as the Area Health Education Centers Program, the
Health Careers Opportunity Program, and the Centers of Excellence
Program are all particularly effective in addressing faculty shortages,
institutional barriers and other programs needed to support the cost of
educating under-represented minority health practitioners and
addressing the needs of underserved areas. These programs are
particularly advantageous to Historically Black Colleges and
Universities, where Departments of Occupational Therapy, for example,
are at constant risk of closure. Adequate support from HRSA's health
professions program is important for all institutions of higher
education to meet our workforce needs.

ADMINISTRATION ON AGING

Mr. Chairman, the administration on Aging (AoA) has developed a
commendable vision and program structure that focuses on the importance
of community based organizations to help adults as they age maintain
their independence and well being in the community. AoA is to be
commended for its development of a national network of Aging and
Disability Resource Centers (ADRC). The ADRC initiative supports State
efforts to develop ``one stop shop'' programs that help seniors make
informed decisions about service and support options. AOTA is
disappointed, however, in the very limited and diminishing
discretionary program needed to fund and promote new and innovative
options to help seniors remain independent. For example, AOTA is aware
of the exciting and large array of pre-market assistive device
technologies that need further research, development and testing before
they can be appropriately promoted and used by our seniors. AOTA
recommends increased funding for AoA in fiscal year 2009.

DEPARTMENT OF EDUCATION

As the national association representing occupational therapy, a
profession dedicated to maximizing independence and function for people
throughout the lifespan, AOTA supports NIDRR's Long Range Plan's
emphasis on rapidly transitioning research knowledge into policy and
best practices that will improve the quality of life for people with
disabilities. We urge Congress to fully fund these activities. Two
issues of particular interest for AOTA in this area are the Disability
Rehabilitation Research Projects (DRRP) related to rehabilitation of
children with traumatic brain injury and reducing obesity and obesity-
related secondary conditions in adolescents and adults with
disabilities.
AOTA also recognizes the translational research being conducted by
the Institute of Educational Science, particularly the National Center
for Special Education Research (NCSER) which published a request for
proposals on the topic of special education related services. AOTA
believes Congress should increase support for NCSER in order to promote
research that delivers more evidence-based interventions into
classrooms.

SUMMARY AND CONCLUSION

Mr. Chairman, we appreciate the opportunity to testify on the many
important programs funded by this subcommittee. A summary of our
specific funding recommendations follows:
CDC: +$20.7 Million for the Center for Injury Prevention and Control
--Increased funding needed for CDC's Falls Prevention Program and
Older Drivers Initiative.
NIH and Medical Rehabilitation Research
--6.5 percent increase for NIH overall and a 6.5 percent increase for
Medical Rehabilitation Research;
HRSA: +$50.74 million to Restore Administration Cuts
--Area Health Education Centers Program, the Health Careers
Opportunity Program and the Centers of Excellence Programs
AoA: +$5 million for programs to fund innovative options to help
seniors remain independent.
______

Prepared Statement of the American Psychological Association (APA)

The APA, in Washington, DC, is pleased to submit these
recommendations. APA is the largest scientific and professional
organization representing psychology in the United States and is the
world's largest association of psychologists. APA's membership includes
more than 148,000 researchers, educators, clinicians, consultants and
students. Through its divisions in 54 subfields of psychology and
affiliations with 60 State, territorial, and Canadian provincial
associations, APA works to advance psychology as a science, as a
profession and as a means of promoting human welfare.
Many of the programs in this appropriations bill directly impact
the health and quality of life of populations that are now underserved
by the health care and education systems. Ethnic and linguistic
minorities and rural and urban families in poverty are especially
vulnerable to the current economic downturn and would benefit from
targeted research and services. In addition, special populations
including children and the elderly have specific health needs. Below
are APA's recommendations for funding for needed research and services
to improve health and education for all, but particularly for these
underserved populations.
National Institutes of Health.--APA supports the recommendation of
the Coalition for Health Funding of a 6.5 percent increase for NIH in
fiscal year 2009. APA is concerned about falling success rates, falling
grant application rates, and the increasing age of first-time grant
recipients that have been exacerbated by sub-inflationary funding
increases over the past 5 years.
Research on behavior and health is an integral part of the NIH
research portfolio, and must remain so to reduce the complications of
the chronic conditions that are such large contributors to health care
costs. Behavioral research on diabetes is a case in point. Diabetes can
lead to devastating complications such as heart disease, stroke,
blindness, and premature death. Diabetes is growing at an epidemic
rate, with more than 20 million Americans currently affected, and 54
million with pre-diabetes. For many years, scientists believed that
medication was the only tool to prevent and treat diabetes. Medication
can prevent some complications, but does not eliminate all the adverse
consequences. A landmark study called the Diabetes Prevention Program
\1\ demonstrated that lifestyle interventions--modest weight loss and
regular physical activity--can reduce the risk of developing Type 2
diabetes in high-risk adults by 58 percent, compared to 31 percent
reduction with medication alone. These findings led to ``Small Steps,
Big Rewards'', the first national diabetes prevention campaign.
---------------------------------------------------------------------------
\1\ Knowler WC, Barrett-Connor E, Fowler SE, et al.; Diabetes
Prevention Program Research Group. Reduction in the incidence of type 2
diabetes with lifestyle intervention or metformin. N Engl J Med. 2002
Feb 7;346(6):393-403.
---------------------------------------------------------------------------
NIH funding of research on substance abuse is key to realizing the
national goal of eliminating health disparities. The consequences of
drug abuse disproportionately impact minorities, especially African
American populations. The National Institute of Drug Abuse (NIDA)
encourages research in this population, particularly in geographic
areas where HIV/AIDS rates are high and or growing among African
Americans, including in criminal justice settings. NIDA's promising
research among the Native American community has the potential to make
an impact on methamphetamine abuse in those rural populations.
Increase the power of research on HIV-AIDS: Speed translation of
research to the affected communities.--NIH-supported behavioral
research aimed at reducing the likelihood of HIV infection should
include the necessary structural, environmental, and socio-economic
variables to ensure that the end product can be evaluated as
appropriate for racial and ethnic minority populations.
Congress needs better data in order to track which NIH programs
train minority scientists most effectively, and which disciplines are
best attracting minority trainees. APA recommends that Congress (a)
urge the National Center for Minority Health and Health Disparities
(NCMHD) to collaborate with all Institutes and Centers to produce an
integrated and coordinated NIH-wide science trainee data tracking
system, and (b) suggest that NCMHD engage trainees actively in the data
tracking process to document trainee outcomes such as funding awards
for trainees or fellows, including those programs that are targeted to
underrepresented minorities. APA also recommends that Congress urge the
Center to continue its efforts to build a foundation of talented
researchers who will create the knowledge base needed to address the
many complex issues underlying health disparities in communities of
color, and to collaborate with other I/Cs on existing efforts to
enhance recruitment and retention of underrepresented minority
scientists.
Health Resources and Services Administration: improve access to
care for the underserved.--The Graduate Psychology Education (GPE)
Program is the nation's only Federal program dedicated solely to the
education and training of psychologists. The activity is authorized by
the Public Health Service Act [Public Law 105-392 section 755
(b)(1)(J)] and funded under the ``Allied Health and Other Disciplines''
account in the Labor-HHS Appropriations Bill. Established 6 years ago,
GPE provides grants to accredited psychology doctoral, internship and
postdoctoral training programs. An exemplary ``two-for-one'' Federal
program, GPE supports the interdisciplinary training of psychology
graduate students while they provide supervised mental and behavioral
health services to underserved populations, such as older adults,
children, the chronically ill, and victims of abuse and trauma,
including returning military personnel and their families, especially
in rural and urban communities. GPE currently supports 18 grants across
the country at academic institutions and training sites. Prior to
recent budget cuts, one major program component had been devoted to
geropsychology--the area of practice focusing on needs of the elderly.
Providing $7 million in fiscal year 2009 will restore funding to allow
HRSA to run a national competition to produce approximately 30 general
GPE training grants and 10 new geropsychology grants.
National Health Service Corps (NHSC): address health professions
shortages, particularly in mental and behavioral health.--There are
currently 2,724 mental health professional shortage areas (HPSAs)
across the country accounting for an estimated underserved population
of over 56 million. Psychologists, as health professionals eligible to
participate in the NHSC Loan Repayment Program, are a critical
component in meeting the mental and behavioral health needs of these
underserved populations. While the NHSC supports a field strength of
over 4,000 practitioners, HRSA estimates that an additional 30,000
practitioners are needed to achieve the target HPSA practitioner/
population ratios. However, in the past 5 years funding for the NHSC
has been cut by $47 million, over 27 percent of a budget that was
already insufficient in fiscal year 2003. Consequently, the NHSC has
reduced annual scholarship and loan repayment awards by over 25 percent
during that period (from 1,351 awards in fiscal year 2003 to 1,012 in
fiscal year 2007). At its current funding level, the NHSC is unable to
award qualified loan repayment applicants, and 13 practitioners in
underserved areas are turned away for every 1 accepted. To address the
deficiencies and to ensure an increase in psychologists serving in the
NHSC, we strongly urge a steady and sustainable increase starting with
a $200 million appropriation for the NHSC in fiscal year 2009.
Substance Abuse and Mental Health Services Administration
(SAMHSA):protect students at risk of suicide.--The APA urges the
Committee to increase funds for the Campus Suicide Prevention program.
This program, administered by SAMHSA and authorized as part of the
Garrett Lee Smith Memorial Act, has made 56 grants to 2- and 4-year
colleges and universities throughout the nation. Still, with nearly
4,000 institutions of post-secondary study in the United States, $5
million cannot meet the needs that exist.
Those needs are significant. The most recent National College
Health Assessment noted, ``the rate of students reporting ever being
diagnosed with depression has increased 56 percent in the last six
years, from 10 percent in spring 2000 to 16 percent in spring 2005.'' A
2007 Survey of College Counseling Center Directors found that the
greatest concerns facing centers was finding referrals for students
requiring long term help (62 percent), followed administrative
considerations of handling of students with more serious psychological
problems (61 percent), and the growing demand for services without an
increase in resources (59 percent). Finally, and of great significance,
suicide is the 2nd leading cause of death among college students. When
students receive help for their psychological problems, counseling can
have a positive impact on personal well-being, academic success, and
retention. A survey conducted by the University of Idaho Student
Counseling Center (2000) found that 77 percent of students who
responded reported that they were more likely to stay in school because
of counseling and that their school performance would have declined
without counseling.
Center for Mental Health Services: Expand the Minority Fellowship
Program (MFP).--There is an urgent need to address health disparities
as the demographics of our nation are changing dramatically. While
minorities are projected to comprise 40 percent of the U.S. population
by 2025, only 23 percent of recent doctorates in psychology, social
work, and nursing were awarded to minorities. The MFP's mission is to
address this need by increasing the number of minority mental health
professionals and by training mental health professionals to become
culturally competent. APA recommends the Committee include $6 million
for the MFP.
Emergency Mental Health and Traumatic Stress Services Branch:
increase attention to child trauma.--Traumatic events can have a
significant impact on the physical, mental, emotional, and behavioral
health of children and families. SAMHSA has made tremendous efforts in
this area through the outstanding National Child Traumatic Stress
Network (NCTSN) program and its coordinating center, the UCLA-Duke
University National Center for Child Traumatic Stress. APA recommends
increased funding for NCTSN programs supporting the recovery of
children, families and communities impacted by a wide range of trauma.
APA also encourages SAMHSA to strengthen the expertise of this critical
program through programmatic support of experienced child trauma
professionals, and to increase attention to the needs of children and
families affected by trauma.
Center for Substance Abuse Prevention (CSAP): train providers to
identify substance use and mental disorders of persons with HIV.--
According to recent reports, almost half of persons with HIV/AIDS
screened positive for illicit drug use or a mental disorder, including
depression and anxiety disorder. APA encourages SAMHSA and CDC to
collaborate with HRSA to train health care providers to screen HIV/AIDS
patients for mental health and substance use problems.
CDC's National Center for Health Statistics (NCHS): improve
surveillance of eating disorders.--Eating disorders are a significant
public health problem for individuals across the lifespan. They may
have serious, chronic effects on one's quality of life and often co-
occur with significant physical and mental health problems. However,
the impact of these disorders has not yet been appropriately
investigated. Therefore, APA urges the Committee to encourage the CDC
to increase support for surveillance and research efforts regarding the
incidence, morbidity, and mortality rates of eating disorders,
including anorexia nervosa, bulimia nervosa, binge eating disorder, and
eating disorders not otherwise specified across age, ethnicity and
gender subgroups.
Administration on Aging (AoA)'s National Family Caregiver Support
Program (NFCSP): fund critical program for family caregivers.--Family
caregivers play an essential role in providing a significant proportion
of our nation's health and long-term care for those who are chronically
ill and aging. Research suggests that respite provides family
caregivers with the relief necessary to help maintain their own health,
bolster family stability, keep marriages intact, and avoid or delay
more costly nursing home or foster care placements. APA urges Congress
to fund the Lifespan Respite Care Act at its authorized level of $53.3
million.
Administration for Children and Families (ACF): increase attention
to prevention of maltreatment of Children with Disabilities.--APA is
committed to preventing child maltreatment and ameliorating its adverse
health effects. In particular, children with disabilities are a
distinct high-risk group for abuse and neglect. An estimated 300,000
children with disabilities are maltreated each year, which is
approximately two to three times more than children without
disabilities. APA recommends targeted support for appropriate research,
and the implementation of evidence-based prevention and early
intervention efforts for children with disabilities.
The Department of Education's Office of Safe and Drug-Free Schools
(OSDFS): expand use of threat assessments.--Research shows that threat
assessment techniques are more effective in preventing school violence
and shootings than zero tolerance measures and similar disciplinary
strategies. Threat assessment is a process of evaluating the threat,
and the circumstances surrounding the threat, to uncover any facts or
evidence that indicate the threat is likely to be carried out. APA
recommends the adoption of standardized, research-based threat
assessment techniques, including the creation of interdisciplinary
school-based threat assessment teams that address threats on a case-by-
case basis.
Enhance Culturally and Linguistically Appropriate Education.--APA
urges the strengthening of programs that meet the unique cultural,
linguistic and educational needs of ethnic minority and American
Indian/Alaska Native students from pre-school to graduate-level
education. Ethnically diverse children and American Indian/Alaska
Native children are performing at far lower levels than other students.
APA recommends support for educational systems that reflect the unique
needs of these populations.
______

Prepared Statement of the American Physiological Society

The American Physiological Society (APS) thanks the subcommittee
for its sustained support for the National Institutes of Health (NIH).
The doubling of the agency's budget that took place between 1998 and
2003 allowed the NIH to explore new and innovative ways to address
challenges in biomedical research. The increased funding has allowed
researchers to investigate scientific opportunities on an unprecedented
scale, creating significant momentum and excitement in the research
community. To maximize and build upon that momentum, the NIH must be
able to continue to provide support for scientists and researchers
around the country. For the last 5 years, the NIH budget has failed to
keep pace with inflation, resulting in a loss of purchasing power of
more than 10 percent. The Administration's fiscal year 2009 budget
proposal would fund the NIH at $29.3 billion, the same as in fiscal
year 2008. The APS urges you to make every effort to provide the NIH
with $31.1 billion in fiscal year 2009 so we can take advantage of
scientific opportunities and strengthen the Nation's scientific
workforce to face future challenges.
The APS is a professional society dedicated to fostering research
and education as well as the dissemination of scientific knowledge
concerning how the organs and systems of the body work. The Society was
founded in 1887 and now has more than 10,000 member physiologists. Our
members conduct NIH-supported research at colleges, universities,
medical schools, and other public and private research institutions
across the United States. The APS offers these comments on the budget
recognizing both the enormous financial challenges facing our Nation
and the enormous opportunities before us to make progress against
disease.

RESEARCH CHALLENGES AND SOLUTIONS

Looking ahead, the scientific and medical communities see many
challenges on the horizon including an aging population, the growing
incidence of obesity, diabetes and heart disease, and new and emerging
infectious diseases. The NIH has taken a forward-thinking approach to
these challenges, and developed a vision for the future of health care
that focuses on predicting who will develop diseases with the goal of
developing personalized prevention and treatment strategies that will
pre-empt disease onset before symptoms appear.\1\ The goal of this
approach is to minimize health care expenses by keeping Americans
healthier longer, instead of the current model of health care, which is
based on intervention once symptoms occur. In order to make this vision
a reality, extensive research is needed to increase our understanding
of the basic mechanisms of disease and pursue the most effective
intervention strategies.
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\1\ http://www.nih.gov/strategicvision.htm (accessed March 19,
2008).
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An example of this proactive approach is beginning to take shape in
Alzheimer's disease research. Alzheimer's is a devastating neurological
disease that afflicts a growing number of older Americans. Researchers
have used both basic and clinical research to begin to determine who is
at risk for developing the disease, identify the underlying genetic
variants, and understand the molecular pathology in the brains of those
who are affected. This work has led to several new targets for drug
development that will be explored in the coming years, hopefully
leading to the development of new ways to prevent and treat Alzheimer's
disease.
Another recent breakthrough that holds the promise of saving many
lives through disease prevention is the development of a vaccine that
protects against cervical cancer. Scientists have known for some time
that human papilloma virus (HPV) infection can in some cases lead to
the development of cervical cancer in women. While effective screening
methods for early detection are available, the disease remains a
significant cause of death in the United States and around the world,
where health care systems are not able to provide routine screening for
precancerous cells. The recently released cervical cancer vaccine is
designed to prevent infection by several of the viruses that cause most
of the cancers and by vaccinating young women it is hoped that the
incidence of cervical cancer will decline.

THE SCIENTIFIC WORKFORCE

In addition to supporting research, the NIH must also address
workforce issues to be sure that our nation's researchers are ready to
meet the challenges they will face in the future. Recent data from the
NIH shows that the average age of NIH supported principal investigators
(PI) is now 50.8 years, up from an average of 39.1 years in 1980.\2\ In
addition, the average age of the new NIH PI has increased to 42.4
years. As the scientific workforce ages and researchers retire, there
is concern that there will not be an adequate number of young
scientists who are trained to replace them. NIH has undertaken several
programs to encourage and fund early-career investigators, but falling
success rates may discourage trainees from pursuing careers in academic
science. The fiscal year 2009 budget request would result in an overall
success rate for grant applications of just 18 percent, the lowest
figure in decades. As funding falters, the best and brightest minds
will turn away from careers in medical science. If NIH cannot fund new
ideas, this will not only hamper efforts to find cures, it will also
discourage up and coming researchers who could become the next
generation of basic and clinical scientists.
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\2\ http://grants.nih.gov/grants/new_investigators/
resources.htm#data (accessed March 21, 2008).
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RECOMMENDATIONS

The APS joins the Federation of American Societies for Experimental
Biology (FASEB) and the Ad Hoc Group for Medical Research Funding in
urging that NIH be provided with $31.1 billion in fiscal year 2009 to
permit the agency to maintain its current wide-ranging and important
research efforts. Because the majority of the NIH budget is distributed
to scientists who carry out their research in all 50 States, the
investment that Congress makes in biomedical research creates jobs and
contributes to economic vitality in communities throughout the country.
The continued health and prosperity of our Nation's people depends on a
robust and consistent investment in basic, translational and clinical
research.
______

Prepared Statement of the American Society for Microbiology

The American Society for Microbiology (ASM) wishes to submit the
following statement in support of increased funding for the Centers for
Disease Control and Prevention (CDC). The ASM strongly believes that
the CDC must receive sustained and sufficient funding to support its
mission as the Nation's principal public health agency. The
administration's proposed fiscal year 2009 budget for CDC falls 7.5
percent below the fiscal year 2008 level and clearly is inadequate to
support CDC's science based programs which are so critical to
preserving public health.
The recently released World Health Organization's (WHO) report of
higher than expected incidences of extensively drug-resistant
tuberculosis (XDR-TB), illustrates the consequences of underestimating
the global threat from infectious diseases. In the United States,
recent recalls of contaminated ground beef, peanut butter and produce,
along with other events like the spread of drug-resistant staph
infections in medical facilities and communities, also warn us against
under funding of CDC programs in infectious disease surveillance and
prevention.
The ASM believes that the administration's fiscal year 2009
proposed budget for CDC would undermine essential CDC capabilities. We
recommend instead that Congress appropriate $7.4 billion for the fiscal
year 2009 CDC budget. With annual U.S. healthcare costs projected by
Federal economists to exceed $4 trillion by 2017, it seems prudent to
invest now in preventing diseases, present and future. We need to make
increased investments in the CDC to slow or stop disease outbreaks
through education, prevention, preparedness and research.

CDC INFECTIOUS DISEASE PROGRAMS SAFEGUARD UNITED STATES AND GLOBAL
PUBLIC HEALTH

The administration's proposed funding cuts for the fiscal year 2009
CDC budget will weaken the agency's key infectious disease programs.
The $1.87 billion allocated for infectious diseases is a decrease of
$30 million, or 5.1 percent below the fiscal year 2008 level. CDC's
diverse programs include research and surveillance activities that must
be sustained, long term, not suddenly created in response to some
unexpected disease outbreak. CDC initiatives that focus on preparing
against emerging infectious diseases or slowing the spread of
antimicrobial resistant (AR) pathogens are wisely investing Federal
resources in cost effective prevention. All these programs rely on
adequate Congressional appropriations that recognize infectious disease
control as central to the CDC's overall mission of protecting the
public. Unfortunately, the proposed individual program levels for
fiscal year 2009 would constrict these CDC activities, which is
shortsighted given the ever changing nature of pathogens and patient
populations.
Antimicrobial Resistance.--Across the CDC, any program related to
infectious disease must now consider potential pathogens that have
evolved sufficiently to resist traditional drug therapies. Last year's
media reports of highly virulent staph infections among sports teams
and international travelers infected with XDR-TB were snapshots of the
reality that AR infections are steadily increasing in incidence and
severity. A CDC study released in October determined that in the United
States during 2005, methicillin-resistant Staphylococcus aureus (MRSA)
caused more than 94,000 life threatening infections and nearly 19,000
deaths, the first national baseline of MRSA's impact on public health.
Earlier CDC studies had determined that more than 70 percent of
bacterial hospital-acquired infections are resistant to at least one of
the antimicrobial drugs most commonly used to treat them. In 2007, the
CDC made new treatment recommendations for gonorrhea after finding that
rising numbers of cases are resistant to commonly used and previously
highly effective antimicrobials. Surveillance data had shown that
between 2001 and 2006, fluoroquinolone-resistant cases rose from less
than 1 percent of reported infections to over 13 percent. Gonorrhea,
the Nation's second most commonly reported infectious disease, causes
an estimated 700,000 new infections annually. Additionally,
oseltamivir-resistant H1N1 was recognized in Europe and the United
States this year. Continued emergence of this strain could be a
potential threat in the context of pandemic flu preparedness and the
stockpiling of Tamiflu.
Another year of shrinking support for the CDC will undercut the
nationwide strategy begun in 1999 with creation of the interagency
Antimicrobial Resistance Task Force, co-chaired by the CDC. In 2001,
the Task Force launched its Public Health Action Plan to Combat
Antimicrobial Resistance, outlining an ambitious agenda to improve
surveillance, prevention and control, and research and product
development. Last fall, ASM commented on the Strategies to Address
Antimicrobial Resistance Act (STAAR Act; H.R. 3697, S. 2313), which
encourages greater Federal efforts against AR infections, and
recommended that the CDC be appointed the lead agency for the Task
Force and the Action Plan. The agency's infectious disease programs
integrate proven CDC expertise that ranges from case reporting networks
to research on faster diagnostic tests for field use. Monitoring
outbreaks like those caused by MRSA, pathogenic E. coli, or XDR-TB, is
optimized through CDC surveillance systems that include the National
Healthcare Safety Network. However, as more and more hospitals are
required via State mandates to report nosocomial infections including
MRSA, they will have to register with the National Healthcare Safety
Network database, causing a strain on this network. Additional
resources will be necessary to for the database to support this growth.
ASM recommends that Congress appropriate additional resources for
CDC antimicrobial resistance programs of $65 million in fiscal year
2009. The administration's fiscal year 2009 CDC budget would instead
cut allocations for AR activities to $16.5 million, 2.5 percent below
last year. This is an unfortunate backward approach to a public health
problem that is growing nationally and internationally.
Emerging Infectious Diseases.--Funding for emerging infectious
diseases (EID) would be cut under the proposed fiscal year 2009 budget
which decreases funding to ``All Other Infectious Diseases'' by $26.6
million, or 20 percent under last year's appropriation. ASM recommends
that at a minimum, funding for this group of diseases should be
restored to the fiscal year 2007 or fiscal year 2008 level of $130-132
million, with an adjustment for inflation. Failure to do so could
impinge on the CDC's capacity to quickly respond to EID outbreaks in
the United States and abroad. Rapid responses rely upon a well funded
infrastructure of special pathogens expertise and laboratories,
training programs for State and local laboratory personnel, and
domestic or global case reporting computer networks. Weak fiscal
support of EID-related programs could slow what has been to date, very
rapid CDC reaction, typified by the SARS, West Nile virus and foodborne
outbreaks that mobilized CDC resources in recent years.
Unpredictable emerging and re-emerging infectious diseases are a
constant in public health and must not be ignored. The viruses causing
HIV infection and Ebola fever were once unknown pathogens eventually
linked by scientists to newly emergent diseases. Long familiar diseases
like dengue fever and cholera are today spreading to new geographic
regions or reappearing in areas once thought freed of the diseases. CDC
assisted studies reported in 2007 included discovery of a new,
potentially deadly bacterial species isolated from a U.S. traveler to
Peru and related to trench fever. Researchers using a new molecular
typing test developed by CDC reported that a viral strain typically
tied to common colds and stomach flu, adenovirus 21, is becoming more
virulent and more common in the United States, with half of the
patients requiring hospitalization. The agency prepares for the
unexpected through its time tested blend of ongoing surveillance,
education and training programs, prevention protocols, and basic
research on best methods. CDC uses these science based tools in an
impressive range of activities that could be curtailed by the
administration's inopportune budget cuts for fiscal year 2009.
If Congress does not reverse the downturn in CDC funding, another
specific budget category to be reduced is the National Center for
Zoonotic, Vector-Borne and Enteric Diseases (NCZVED), which addresses a
broad range of relatively rare emerging pathogens and diseases like
SARS, hantavirus, Ebola, and ``mad cow'' disease. The program also
includes activities on far more prevalent disease like Lyme disease and
foodborne diseases such as salmonellosis and E. coli 0157, as well as
the growing threat of drug-resistant malaria, the reemergence of yellow
fever in South America, and the increasing threat of dengue and dengue
hemorrhagic fever throughout much of Asia and the Americas. The CDC
2009 request includes $60.6 million for NCZVED, a decrease of $7.2
million below fiscal year 2008, despite the continual call for CDC
expertise in special pathogens and food safety. For example, CDC
recently confirmed test results from the national lab in Uganda that
identified a new virus subtype causing an outbreak of Ebola fever. CDC
also responded last year to outbreaks of Marburg hemorrhagic fever in
Uganda and Rift Valley fever in Kenya, where it led efforts to
establish a Rift Valley fever veterinary diagnostic laboratory. The
agency also updated traveler advisories based on rising reports of
mosquito-borne dengue fever in Latin America and the Caribbean. Disease
patterns in this category can be altered by diverse elements like
farming practices, human or vector migration, and climate patterns.
Public health responses undoubtedly benefit from CDC's skillful
collaboration among scientific disciplines and across national borders.
Additionally, Federal investment in the WNV program over the years
has created a strong infrastructure assisting States in the prevention,
detection and response to WNV and other vector-borne diseases. Since
fiscal year 2007, however, program funding has dwindled causing concern
that the infrastructure will not be able to support the core capacity
of activities, including lab capacity and national, State and local
expertise in all vector-borne diseases. Appropriate support for this
program in fiscal year 2009 and beyond is critical as WNV becomes more
endemic in this country.
Finally, as foodborne disease outbreaks continue to rise, CDC needs
additional resources to support databases such as PulseNet and FoodNet.
Last year's investigation of over 700 cases of Salmonella infection in
48 States which were linked to contaminated peanut butter, is an
example of CDC's real time surveillance and control efforts. Large
multiple State investigations, however, are a strain on CDC's limited
databases. Additional resources will help to improve and enhance these
data collection networks.
HIV/AIDS, Viral Hepatitis, STDs and TB Prevention.--The CDC budget
category covering HIV/AIDS, hepatitis, sexually transmitted diseases
(STDs), and tuberculosis characterizes the breadth of CDC
responsibilities in protecting public health. Unfortunately, funding on
these programs would stagnate under the fiscal year 2009 budget, losing
$2 million, or 0.2 percent of its fiscal year 2008 level. The recent
report of hepatitis C infections traced by public health officials to
outpatient procedures at a Las Vegas clinic is a timely reminder that
the various types of viral hepatitis, which kill more than 5,000
Americans annually, are not a minor health problem. New infections with
sexually transmitted pathogens are rising in the United States. In
2006, more than 1 million cases of chlamydia broke the unenviable U.S.
record for annual reports of a sexually transmitted disease, but
officials believe that actual case numbers are closer to 2.8 million.
CDC surveillance networks also reveal that cases of syphilis and
gonorrhea are increasing, complicated by drug resistant forms.
At the end of 2007, there were about 33.2 million persons worldwide
living with HIV infection, including over 1 million in the United
States. Co-infection with TB is becoming more prevalent (an estimated
one third of persons living with HIV), and TB is the cause of death in
up to half of AIDS cases. The concurrent spread of drug resistant forms
of tuberculosis, especially in areas hard hit by HIV/AIDS, deeply
worries public health experts. CDC should work towards assuring
necessary laboratory support for tuberculosis diagnosis and sensitivity
testing in areas where antiretroviral therapy and anti-tuberculosis
therapy are being distributed in HIV endemic areas that are co-endemic
with TB. Without such laboratory support, we are at risk of
contributing to the MDR and XDR-TB epidemic through the use of
ineffective drugs. Any advances made in diagnosis and controlling
tuberculosis and HIV/AIDS must be preserved with sufficient Federal
funding. The administration's proposed CDC fiscal year 2009 budget does
correctly recognize the opportunity offered by estimates that up to 25
percent of U.S. cases are unaware of their infection, providing
increased funds to expand domestic HIV testing and early diagnosis in
high risk United States locations and populations.

ASM ASKS CONGRESS TO REVERSE EROSION OF CDC FUNDING

ASM recommends that Congress approve $7.4 billion for CDC funding
in fiscal year 2009. This request to significantly increase the CDC
budget acknowledges the major contributions made by the agency to
disease prevention in the United States and elsewhere. Whether focusing
on influenza, bioterrorism, quarantine stations, or other priorities,
ongoing CDC programs bring together agency and other scientists, along
with health care officials and governments, to find science based
solutions to complex situations. The CDC surveillance networks and
field research teams can detect and help contain disease outbreaks
anywhere in the world. The strength of CDC's many infectious disease
programs lies in steady sources of talented personnel and sufficient
funding. Eroding Federal support with flat or declining appropriations
is not the best advised approach to preserving the Nation's public
health.
______

Prepared Statement of the American Society for Microbiology

The American Society for Microbiology (ASM) appreciates the
opportunity to submit a written statement on the fiscal year 2009
budget proposal for the National Institutes of Health (NIH). The ASM is
seriously troubled by the continuing shrinkage of appropriations for
the National Institutes of Health (NIH), with inflation-adjusted
funding flat or declining since fiscal year 2003. The President's
proposed fiscal year 2009 budget for NIH continues a disturbing trend
that risks losing our scientific edge in biomedical research. With
annual health spending in the United States likely to exceed $4
trillion by 2017, innovative medical research is critical to
improvements in both public health and the national economy. Increasing
biomedical research is key to finding new cures, treatments and
preventions for infectious and chronic diseases that threaten our
future.
For 5 years the NIH budget has lost ground to biomedical research
inflation, estimated at 3.5-3.7 percent. Since fiscal year 2004 this
situation has cost NIH and biomedical research approximately 11 percent
in purchasing power. At the same time, annual funding has fallen far
short of that needed to adequately support and build on opportunities
in basic and clinical research. The fiscal year 2008 NIH budget of $29
billion, minus the set-aside for the Global Fund for HIV/AIDS, Malaria
and TB, is a meager 0.5 percent increase over fiscal year 2007. The
administration's proposed $29 billion budget for fiscal year 2009
regrettably flatlines NIH funding for the sixth year in a row. This
budget request will clearly weaken fiscal support for NIH, which
expends more than 80 percent of its budget on research at about 3,100
institutions and is the largest single funding source for research at
U.S. universities and colleges.
Because of flat budgets and expanding research opportunities, the
success rates for NIH research grant applications continue to fall. The
total number of grant recipients also will decline under the fiscal
year 2009 request. This is a sobering predictor of slower technical
innovation and fewer medical advances. At the National Institute of
Allergy and Infectious Diseases (NIAID), the number of research grant
requests rose from 1,993 in 1997 to 4,900 in 2007, while success rates
slipped from about 43 percent to 23 percent. The Institute's fiscal
year 2008 funding level was 2.3 percent below fiscal year 2007. The
fiscal year 2009 NIAID request is only 0.2 percent above fiscal year
2008 levels, before $300 million is transferred to the Global Fund.
This downward trend will continue to undercut research that is the
foundation of future biomedical successes and the fight against
infectious diseases.

ASM RECOMMENDS THE NIH BUDGET BE INCREASED BY $1.9 BILLION

The NIH Reform Act of 2006 authorized a funding level of $32.8
billion for the NIH's fiscal year 2008 budget, which illustrates how
far the NIH budget, currently at $29 billion in fiscal year 2008, has
fallen behind congressionally authorized levels of growth. Continuing
fiscal shortfalls will weaken efforts of NIH to develop new therapies,
vaccines, and diagnostics for a myriad of infectious and chronic
diseases. To help reverse the ongoing erosion of biomedical research,
the ASM recommends that the fiscal year 2009 NIH budget be increased by
$1.9 billion, an increase of 6.6 percent. This increase will help
restore purchasing power that has been eroded by 5 years of flat
funding and would provide some measure of growth for biomedical
research.

TAKING ADVANTAGE OF RESEARCH OPPORTUNITIES TO IMPROVE PUBLIC HEALTH AND
ADDRESS INFECTIOUS DISEASES

Federal investment in basic and applied research has had enormous
payoff in medical advances against chronic and infectious diseases. The
following are just several examples of the changeable nature of both
pathogens and their human hosts, evidence that strong biomedical
research programs must be sustained:
--Seasonal influenza kills about 36,000 Americans each year and is an
ever present concern. Even more worrisome is the potential for
pandemic influenza if current bird flu viruses mutate into
forms easily spread from human to human. Since the avian
influenza virus H5N1 resurfaced in 2003, it has spread to more
than 60 countries and infected more than 350 people, with over
60 percent mortality. NIAID scientists are collaborating with
others worldwide to prevent a possible pandemic. Last year, for
example, NIAID researchers identified genetic changes on the
H5N1 surface that could permit easier entry into human cells,
thereby suggesting potential approaches to improved
surveillance and vaccines.
--Antimicrobial resistance is a significant challenge to biomedical
researchers trying to understand the mechanisms involved and to
develop countermeasures. Recent surveillance studies report yet
another newly emerging antimicrobial resistant pathogen, a
multiple-drug resistant variant of the already problematic
methicillin-resistant Staphylococcus aureus (MRSA). In 2005,
MRSA was responsible for an estimated 94,000 life-threatening
infections in the United States and more than 18,000 deaths.
The newly described variant of MRSA is resistant to even more
drugs and causes more-virulent skin infections. NIAID-supported
research is providing key information on resistant staph
infections, like the just published studies identifying
specific proteins secreted by MRSA that determine disease
severity in humans. NIAID-funded scientists also have used
comparative genome sequencing to reveal the origins of epidemic
community-associated MRSA, a growing problem in this country.
--Infectious diseases, whether naturally occurring or deliberately
spread, are among the greatest security challenges to the
United States. Research to develop effective medical
countermeasures to detect prevent and treat infectious diseases
is a key responsibility of the NIAID. The NIAID has updated its
Strategic Plan for Biodefense to address a broad spectrum
strategy to prevent and respond to traditional and new types of
threats that will require the capability to rapidly identify
unknown and poorly defined agents, quickly evaluate the
efficacy of available interventions and develop and deploy
novel treatments. In recent years, the NIAID has expanded its
basic and applied research portfolio and established a
comprehensive infrastructure with extensive resources that
support all levels of research. Examples of this infrastructure
include the following:
--Regional Centers of Excellence (RCEs) for Biodefense and Emerging
Infectious Diseases, ten centers, located nationwide,
provide resouces and communication systems that can be
rapidly mobilized and coordinated with regional and local
systems in response to an urgent public health event.
--Cooperative Centers for Translational Research on Human
Immunology and Biodefense further knowledge of human immune
responses against infectious pathogens and elucidate
molecular mechanisms responsible for both short-term
immunity and long-term immune memory. The ultimate goal of
these eight centers is to translate research on immunity to
infection into clinical applications to protect against
bioterrorist threats.
--National Biocontainment Laboratories (NBLs) and Regional
Biocontainment Laboratories (RBLs), 2 NBLs and 13 RBLs are
available or under construction for research requiring high
levels of containment and are prepared to assist national,
State and local public health efforts in the event of a
bioterrorism or infectious disease emergency.
--Expanded Vaccine and Treatment Evaluation Units, multiple sites
allow for more extensive clinical trials capacity and
expertise.
--The Biodefense and Emerging Infections Research Resources
Repository offers reagents and information essential for
studying emerging infectious diseases and biological
threats.
--Genomics and proteomics centers include the Microbial Sequencing
Centers, the Pathogen Functional Genomics Resource Center,
the Bioinformatics Resource Centers, and the Biodefense
Proteomics Research Centers.
--The In Vitro and Animals Models for Emerging Infectious Diseases
and Biodefense resource provides screening of potential
therapeutics and the development of in vitro animal
efficacy models for evaluating drugs and vaccines.
--The NIAID has supported a number of biodefense workshops and
multiple training opportunities ranging from basic
introductory courses to 2-year fellowships to provide
professional training in biosafety and biocontainment.
These programs are available through the National Biosafety
and Biocontainment Training Program, the RCEs, and NIAID
Institutional Training Grants.
--The NIH routinely reevaluates its research priorities and adjusts
programs to address changing disease threats, national
priorities, or appropriated resources. An example is the
agency-wide Roadmap for Medical Research, a strategy to
leverage waning resources through interdisciplinary teams,
state-of-the-art technologies, and harmonization of clinical
research efforts. The NIH's singular ability to impact
biomedical research broadly is epitomized by the recent launch
of a new Roadmap initiative: the multi-center Human Microbiome
Project to map the genomes of all microorganisms present in or
on the human body, to better understand host-microbe
interactions in both sickness and health. With next-generation
DNA technologies, researchers will eventually sequence 1,000
microbial genomes, results to be deposited in public databases
for use in designing new treatments and better methods to
prevent disease.
Constant changes here and abroad, in populations, disease pathogens
and vectors, climates, economies, cultures, and governments, all have
potential to influence the global burden of human disease. Emerging
threats like West Nile fever or Nipah virus coexist with global
successes like polio or smallpox immunization campaigns. Persistent
challenges like HIV/AIDS and foodborne illnesses continue to confound
public health officials. It is imperative that the NIH maintain its
science based agility to respond appropriately to both the anticipated
and the unexpected health threat.

BIOMEDICAL RESEARCH IS THE FOUNDATION OF RESEARCH COMPETITIVENESS IN A
GLOBAL ECONOMY

Past investments in biomedical research have returned exceptional
benefits to the American people, but there are troubling indicators
that our scientific edge is slipping. Globalization is now increasing
worldwide competition in scientific discovery, technological
innovation, and scientific talent. The United States has declined to
near parity with the EU-15 in recent years in biology publications.
U.S. Federal support for academic R&D is falling for the first time in
a quarter century. It is critical to note that the Federal Government
supports the majority of basic research conducted by academic
institutions. Basic research funded by the NIH fuels technological
innovations and fosters the vitality of the U.S. scientific enterprise.
It helps create new industries and jobs, improves the quality of life
of people and provides technology that contributes to national
security.
The ASM strongly recommends that Congress end the past 5 years of
fiscal neglect for NIH. It is absolutely essential that the United
States increase support for biomedical research, which is an essential
foundation for future U.S. scientific competitiveness, knowledge based
industries, and highly skilled jobs in this country. Biomedical
innovation is key to economic competiveness and technological
breakthroughs that improve our lives.

ASM URGES CONGRESS TO INCREASE FISCAL YEAR 2009 FUNDING FOR NIH

The United States cannot afford to neglect greater investment in
biomedical research. The continuing complacency that has led to the
leveling off and erosion of support for biomedical research can
diminish our defenses against both expected and unpredictable diseases.
Also at risk are the nation's high quality scientific workforce, the
tradition of technological innovation, and competitiveness in global
markets, all nurtured by NIH supported research, laboratories and
institutions. To assure continued public health benefits from
biomedical research, the ASM strongly recommends that Congress increase
the NIH budget by $1.9 billion for fiscal year 2009.
1_____

Prepared Statement of the American Society for Nutrition

The American Society for Nutrition (ASN) appreciates this
opportunity to submit testimony regarding fiscal year 2009
appropriations for the National Institutes of Health (NIH) and the
National Center for Health Statistics (NCHS). ASN is the professional
scientific society dedicated to bringing together the world's top
researchers, clinical nutritionists and industry to advance our
knowledge and application of nutrition to promote human and animal
health. Our focus ranges from the most critical details of research to
very broad societal applications. ASN respectfully requests $31.2
billion for NIH, and we urge you to adopt the President's request of
$125 million for NCHS in fiscal year 2009.
Basic and applied research on nutrition, nutrient composition, the
relationship between nutrition and chronic disease and nutrition
monitoring are critical to the health of all Americans and the U.S.
economy. Awareness of the growing epidemic of obesity and the
contribution of chronic illness to burgeoning health care costs has
highlighted the need for improved information on dietary components,
dietary intake, strategies for dietary change and nutritional
therapies. Preventable chronic diseases related to diet and physical
activity cost the economy over $117 billion annually, and this cost is
predicted to rise to $1.7 trillion in the next 10 years. It is for this
reason that we urge you to consider these recommended funding levels
for two agencies under the Department of Health and Human Services that
have profound effects on nutrition research, nutrition monitoring, and
the health of all Americans--the National Institutes of Health and the
National Center for Health Statistics.

NATIONAL INSTITUTES OF HEALTH

The National Institutes of Health (NIH) is the nation's premier
sponsor of biomedical research and is the agency responsible for
conducting and supporting 90 percent (nearly $1 billion) of federally-
funded basic and clinical nutrition research. Nutrition research, which
makes up about four percent of the NIH budget, is truly a trans-NIH
endeavor, being conducted and funded across multiple Institutes and
Centers. Some of the most promising nutrition-related research
discoveries have been made possible by NIH support.
In order to fulfill the extraordinary promise of biomedical
research, including nutrition research, ASN recommends an fiscal year
2009 funding level of $31.2 billion for the agency, which is a $1.9
billion increase over fiscal year 2008.
Over the past 50 years, NIH and its grantees have played a major
role in the explosion of knowledge that has transformed our
understanding of human health, and how to prevent and treat human
disease. Because of the unprecedented number of breakthroughs and
discoveries made possible by NIH funding, scientists are helping
Americans to live longer, healthier and more productive lives. Many of
these discoveries are nutrition-related and have impacted the way
clinicians prevent and treat heart disease, cancer, diabetes and age-
related macular degeneration.
During the next 25 years, the number of Americans with chronic
disease is expected to reach 46 million, and the number of Americans
over age 65 is expected to be the largest in our nation's history.
Sustained support for basic and clinical research is required if we are
to confront successfully the health care challenges associated with an
older, and potentially sicker, population.
Unfortunately, over the last 5 years the NIH budget has failed to
keep up with inflation and subsequently, the percentage of dollars
funding nutrition-focused projects has declined. Flat budgets have
reduced the purchasing power of the agency by 13 percent, and the
success rate for research proposals to NIH likely will be reduced by
half from that of 6 years ago. New opportunities for ground-breaking
research are going unfunded, and there is a chance that the number of
new therapies under development will begin to decrease. It is
imperative that we renew our commitment to biomedical research and to
fulfill the hope of the American people by making the NIH a national
priority. Otherwise, we risk losing our nation's dominance in
biomedical research.

CDC NATIONAL CENTER FOR HEALTH STATISTICS

The National Center for Health Statistics (NCHS), housed within the
Centers for Disease Control and Prevention (CDC), is the nation's
principal health statistics agency. The NCHS provides critical data on
all aspects of our health care system, and it is responsible for
monitoring the nation's health and nutrition status. Nutrition and
health data, largely collected through the National Health and
Nutrition Examination Survey (NHANES), is essential for tracking the
health and well being of the American population, and it is especially
important for observing health trends in our nation's children. Knowing
both what Americans eat and how their diets directly affect their
health provides valuable information to guide policies on food safety,
food labeling, food assistance, military rations and dietary guidance.
Over the past few years, flat and decreased funding levels have
threatened the collection of this important information, most notably
vital statistics and the NHANES. To address this problem, ASN
recommends an fiscal year 2009 funding level of $125 million for the
agency, which is an $11 million increase over fiscal year 2008. This
recommendation is consistent with the funding level recommended by
President Bush in his fiscal year 2009 budget proposal.
Current funding levels for NCHS are precarious. Before the modest
increase Congress provided last year, NCHS had lost $13 million in
purchasing power since fiscal year 2005 due to years of flat funding,
coupled with inflation and the increased costs of technology and
information security. These shortfalls forced the elimination of data
collection and quality control efforts, threatened the collection of
vital statistics, stymied the adoption of electronic systems and
limited the agency's ability to modernize surveys to reflect changes in
demography, geography, and health delivery.
Moreover, nearly 30 percent of the funding for NHANES comes from
other Federal agencies such as the NIH and the Environmental Protection
Agency. When these agencies face flat budgets or cuts, they withdraw
much-needed support for NHANES, placing this national treasure in even
greater jeopardy.
The obesity epidemic is a case in point that demonstrates the value
of the work done by NCHS. It is because of NHANES that our nation
became aware of this growing public health problem, and as obesity
rates have increased to 31 percent of American adults (which we know
because of continued monitoring), so too have rates of heart disease,
diabetes and certain cancers. It is only through continued support of
this program that the public health community will be able to stem the
tide against obesity. Continuous collection of this data will allow us
to determine not only if we have made progress against this public
health threat, but also if public health dollars have been targeted
appropriately. A recent report from the Institute of Medicine
recognized the importance of NHANES and called for the enhancement of
current surveillance systems to monitor relevant outcomes and trends
with respect to childhood obesity.\1\
---------------------------------------------------------------------------
\1\ Institute of Medicine. Progress in Preventing Childhood Obesity
Washington, DC: National Academies Press, 2006.
---------------------------------------------------------------------------
In addition to our fiscal year 2009 request, we urge the Committee
to consider a path to boost funding for the NCHS to $175 million by
2013. Reaching this level over 5 years, through annual increases of $11
million, would allow the agency to reach what its supporters call
``blue sky.'' Such an increase would ensure uninterrupted collection of
vital statistics and sustain over-sampling of vulnerable populations.
ASN thanks your committee for its support of the NIH and NCHS in
previous years. If we can provide any additional information, please
contact Mary Lee Watts, ASN Director of Public Affairs, at (301) 634-
7112 or [email protected].
______

Prepared Statement of the American Society of Tropical Medicine and
Hygiene

OVERVIEW

The American Society of Tropical Medicine and Hygiene (ASTMH)
appreciates the opportunity to submit written testimony to the House
Labor, Health and Human, Services, and Education Appropriations
Subcommittee. With nearly 3,500 members, ASTMH is the world's largest
professional membership organization dedicated to the prevention and
control of tropical diseases. We represent, educate, and support
tropical medicine scientists, physicians, clinicians, researchers,
epidemiologists, and other health professionals in this field.
We respectfully request that the subcommittee provide the following
allocations in the fiscal year 2009 Labor, Health and Human, Services,
and Education Appropriations bill to support a comprehensive effort to
enhance malaria control programming globally:
--$18 million to the Centers for Disease and Control and Prevention
(CDC) for malaria research, control, and program evaluation
efforts with a $6 million set-aside for program monitoring and
evaluation;
--$31.1 billion to National Institutes of Health (NIH);
--$4.3 billion to the National Institute of Allergy and Infectious
Diseases (NIAID); and
--$71 million to the Fogarty International Center (FIC).
We very much appreciate the subcommittee's consideration of our
views, and we stand ready to work with subcommittee members and staff
on these and other important global health matters.

ASTMH

ASTMH plays an integral and unique role in the advancement of the
field of tropical medicine. Its mission is to promote global health by
preventing and controlling tropical diseases through research and
education. As such, the Society is the principal membership
organization representing, educating, and supporting tropical medicine
scientists, physicians, researchers, and other health professionals
dedicated to the prevention and control of tropical diseases. Our
members reside in 46 States and the District of Columbia and work in a
myriad of public, private, and non-profit environments, including
academia, the U.S. military, public institutions, Federal agencies,
private practice, and industry.
The Society's long and distinguished history goes back to the early
20th century. The current organization was formed in 1951 with the
amalgamation of the National Malaria Society and the American Society
of Tropical Medicine. Over the years, the Society has counted many
distinguished scientists among its members, including Nobel laureates.
ASTMH and its members continue to have a major impact on the tropical
diseases and parasitology research carried out around the world.
ASTMH aims to advance policies and programs that prevent and
control those tropical diseases which particularly impact the global
poor. ASTMH supports and encourages Congress to expand funding for--and
commitments to--national and international malaria control initiatives.
As part of this effort, ASTMH recently conducted an analysis of
federally funded tropical medicine and disease programs and developed
fiscal year 2009 funding requests based on this assessment.

TROPICAL MEDICINE AND TROPICAL DISEASES

The term ``tropical medicine'' refers to the wide-ranging clinical
work, research, and educational efforts of clinicians, scientists, and
public health officials with a focus on the diagnosis, mitigation,
prevention, and treatment of diseases prevalent in the areas of the
world with a tropical climate. Most tropical diseases are located in
either sub-Saharan Africa, parts of Asia (including the Indian
subcontinent), or Central and South America. Many of the world's
developing nations are located in these areas; thus tropical medicine
tends to focus on diseases that impact the world's most impoverished
individuals.
The field of tropical medicine encompasses clinical work treating
tropical diseases, work in public health and public policy to prevent
and control tropical diseases, basic and applied research related to
tropical diseases, and education of health professionals and the public
regarding tropical diseases.
Tropical diseases are illnesses that are caused by pathogens that
are prevalent in areas of the world with a tropical climate. These
diseases are caused by viruses, bacteria, and parasites which are
spread through various mechanisms, including airborne routes, sexual
contact, contaminated water and food, or an intermediary or
``vector''--frequently an insect (e.g. a mosquito)--that transmits a
disease between humans in the process of feeding.

MALARIA

Malaria is a global emergency affecting mostly poor women and
children; it is an acute and sometimes fatal disease caused by the
single-celled Plasmodium parasite that is transmitted to humans by the
female Anopheles mosquito.
Malaria is highly treatable and preventable. The tragedy is that
despite this, malaria is one of the leading causes of death and disease
worldwide. According to the CDC, as many as 2.7 million individuals die
from malaria each year, with 75 percent of those deaths occurring in
African children. In 2002, malaria was the fourth leading cause of
death in children in developing countries, causing 10.7 percent of all
such deaths. Malaria-related illness and mortality extract a
significant human toll as well as cost Africa's economy $12 billion per
year perpetuating a cycle of poverty and illness. Nearly 40 percent of
the world's population lives in an area that is at high risk for the
transmission of malaria.
Fortunately, malaria can be both prevented and treated using four
types of relatively low-cost interventions: (1) the indoor residual
spraying of insecticide on the walls of homes; (2) long-lasting
insecticide-treated nets; (3) Artemisinin-based combination therapies;
and (4) intermittent preventive therapy for pregnant women. However,
limited resources preclude the provision of these interventions and
treatments to all individuals and communities in need.
requested malaria-related activities and funding levels

CDC Malaria Efforts
ASTMH calls upon Congress to fund a comprehensive approach to
malaria control, including adequately funding the important
contributions of the CDC. The CDC originally grew out of the WWII
``Malaria Control in War Areas'' program, and since its founding the
Atlanta-based agency has maintained a strong role in efforts to
research and mitigate malaria. Although malaria has been eliminated as
an endemic threat in the United States for over 50 years, CDC continues
to be on the cutting edge of global efforts to reduce the toll of this
deadly disease.
CDC efforts on malaria falls into three broad areas--prevention,
treatment, and vaccines--and CDC performs a wide range of basic
research within these categories. This includes investigations of the
biology of host-parasite relationships; immune response to malaria;
host genetic factors associated with malaria; parasite genetic
diversity and drug resistance; HIV and malaria interaction; the
efficacy of insecticide-treated nets in preventing illness and deaths;
malaria and pregnancy; public health strategies for improving access to
antimalarial treatment and delaying the appearance of antimalarial drug
resistance; improved transmission reduction strategies; vaccine
development and evaluation; and many other topics.
Although endemic malaria has been eradicated in the United States
it remains one of the leading causes of death and disease around the
world, and a significant proportion of CDC's malaria-focused work
involves working in and with foreign countries to prevent the spread of
malaria, and to assist in the treatment of those who have contracted
the disease. CDC funding in fiscal year 2008 for global malarial
activities is $8.7 million, which includes CDC's contribution to the
$1.2 billion President's Malaria Initiative.
CDC participates in several global efforts, including: The
President's Malaria Initiative (PMI), the Amazon Malaria Initiative
(AMI), the West Africa Network Against Malaria During Pregnancy,
Preventing and Controlling Malaria During Pregnancy in Sub-Saharan, and
the International Red Cross and the Expanded Program for Immunizations.
CDC collaborations support treatment and prevention policy change
based on scientific findings; formulation of international
recommendations through membership on World Health Organization (WHO)
technical committees; and work with Ministries of Health and other
local partners in malaria-endemic countries and regions to develop,
implement, and evaluate malaria programs. In addition, CDC has provided
direct staff support to the WHO; UNICEF; the Global Fund to Fight AIDS,
Tuberculosis, and Malaria; and the World Bank--all stakeholders in the
Roll Back Malaria (RBM) Partnership.

NIH MALARIA PROGRAMS

As the Nation's and world's premier biomedical research agency, the
NIH and its Institutes and Centers play an essential role in the
development of new anti-malarial drugs, better diagnostics, and an
effective malaria vaccine. NIH estimates that its fiscal year 2007
spending on malaria research will total $101 million while malaria
vaccine efforts will receive $45 million. ASTMH urges that NIH malaria
research portfolio and budget be increased by at least 6.6 percent in
fiscal year 2009. To support a comprehensive effort to control malaria,
ASTMH respectfully requests the following funding:
--$31.1 billion to NIH
--$4.3 billion NIAID
--$71 million to the Fogarty International Center for training that
supports U.S. efforts targeting malaria and other neglected
tropical diseases.
National Institute of Allergy and Infectious Diseases (NIAID).--
Malaria continues to be among the most daunting global public health
challenges we face. A long-term investment is needed to achieve the
drugs, diagnostics and research capacity needed to control malaria.
NIAID, the lead institute for malaria research, plays an important role
in developing the drugs and vaccines needed to fight malaria. ASTMH
urges the committee to increase NIAID funding so that present malaria
research efforts be maintained and new areas explored such as:
increasing fundamental understanding of the complex interactions among
the malaria parasites, the mosquito vectors responsible for their
transmission and the human host; developing new diagnostics, drugs,
vaccines, and vector management approaches; and enhancing both national
and international research and research training infrastructure to meet
malaria research needs.
Fogarty International Center (FIC).--While biomedical research has
provided major advances in the treatment and prevention of malaria,
these benefits are often slow to reach the people who need them the
most. While highly-effective anti-malarial drugs exist and when
patients receive these drugs promptly their lives can be saved. The FIC
plays a critical role in strengthening science and public health
research institutions in low-income countries, specifically in malaria,
TB, and neglected tropical diseases. By promoting applied health
research in developing countries, the FIC can speed the implementation
of new health interventions for malaria, TB, and neglected tropical
diseases.
The FIC works to strengthen research capacity in countries where
populations are particularly vulnerable to threats posed by malaria and
neglected tropical diseases. FIC's efforts strengthen the research
workforce in-country--including collaborations with U.S.-supported
global health programs--and help to ensure that programs are
continuously improved and adapted to local conditions, and that the
impact of U.S. investments is maximized, are critical to fighting
malaria and other tropical diseases.
The FIC addresses global health challenges and supports the NIH
mission through myriad activities, including: collaborative research
and capacity building projects relevant to low- and middle-income
nations; institutional training grants designed to enhance research
capacity in the developing world, with an emphasis on institutional
partnerships and networking; the Forum for International Health,
through which NIH staff share ideas and information on relevant
programs and develop input from an international perspective on cross-
cutting NIH initiatives; the Multilateral Initiative on Malaria, which
fosters international collaboration and co-operation in scientific
research against malaria; and the Disease Control Priorities Project,
which is a partnership supported by the FIC, The Gates Foundation, the
WHO, and the World Bank to develop recommendations on effective health
care interventions for resource-poor settings.
ASTMH urges the subcommittee to allocate additional resources to
the FIC in fiscal year 2009 to increase these efforts, particularly as
they address the control and treatment of malaria.

CONCLUSION

Thank you for your attention to these important global health
matters. We know that you face many challenges in choosing funding
priorities and we hope that you will provide the requested fiscal year
2009 resources to those agencies programs identified above. ASTMH
appreciates the opportunity to share its views, and we thank you for
your consideration of our requests.
______

Prepared Statement of the American Thoracic Society

SUMMARY.--FISCAL YEAR 2009 FUNDING RECOMMENDATIONS
[In millions of dollars]
------------------------------------------------------------------------
Amount
------------------------------------------------------------------------
National Institutes of Health........................ 30,537
National Heart, Lung & Blood Institute........... 3,112
National Institute of Allergy & Infectious 4,675
Disease.........................................
National Institute of Environmental Health 683
Sciences........................................
Fogarty International Center..................... 70
National Institute of Nursing Research........... 146
Centers for Disease Control and Prevention........... 10,700
National Institute for Occupational Safety & 253
Health..........................................
Environmental Health: Asthma Activities.......... 70
Div. of Tuberculosis Elimination................. 300
Chronic Disease Prev. & Health Promotion: COPD... 6
------------------------------------------------------------------------

The American Thoracic Society (ATS) is pleased to submit our
recommendations for programs in the Labor Health and Human Services and
Education Appropriations Subcommittee purview. The American Thoracic
Society, founded in 1905, is an independently incorporated,
international education and scientific society that focuses on
respiratory and critical care medicine. With approximately 18,000
members who help prevent and fight respiratory disease around the
globe, through research, education, patient care and advocacy, the
Society's long-range goal is to decrease morbidity and mortality from
respiratory disorders and life-threatening acute illnesses.

LUNG DISEASE IN AMERICA

Lung disease is a serious health problem in the United States. One
in seven deaths is caused by lung disease, making it America's number
three cause of death. In 2005, lung diseases cost the U.S. economy an
estimated $157.8 billion in direct and indirect costs. Lung diseases
include chronic obstructive pulmonary disease, lung cancer,
tuberculosis, influenza, sleep disordered breathing, pediatric lung
disorders, occupational lung disease, sarcoidosis, asthma and severe
acute respiratory syndrome (SARS).
The ATS is concerned that the President's fiscal year 2009 budget
proposes to freeze NIH spending at the fiscal year 2008 level and would
impose a significant funding cut for the Centers for Disease Control
and Prevention (CDC). We ask that this subcommittee recommend a 6.5
percent increase for NIH so that the institute can respond to
biomedical research opportunities and public health needs. In order to
stem the devastating effects of lung disease, research funding must
continue to grow to sustain the medical breakthroughs made in recent
years. We also ask that the CDC budget be adjusted to reflect increased
needs in chronic disease prevention, infectious disease control,
including strengthened TB control to prevent the spread of drug-
resistant TB, and occupational safety and health research and training.
There are three lung diseases that illustrate the need for further
investment in research and public health programs: Chronic Obstructive
Pulmonary Disease, pediatric lung disease, asthma and tuberculosis.

COPD

Chronic Obstructive Pulmonary Disease (COPD) is the fourth leading
cause of death in the United States and the third leading cause of
death worldwide. It is estimated that 11.2 million patients have COPD
while an additional 12 million Americans are unaware that they have
this life threatening disease. According to the National Heart, Lung
and Blood Institute (NHLBI), COPD cost the U.S. economy an estimated
$37 billion per year. We recommend the subcommittee encourage NHLBI to
devote additional resources to finding improved treatments and a cure
for COPD.
Today, COPD is treatable but not curable. Fortunately, promising
research is on the horizon for COPD patients. Despite these leads, the
ATS feels that research resources committed to COPD are not
commensurate with the impact the disease has on the United States and
that more needs to be done to make Americans aware of COPD, its causes
and symptoms. The ATS commends the NHLBI for its leadership on
educating the public about COPD through the National COPD Education and
Prevention Program. As this initiative continues, we encourage the
NHLBI to maintain its partnership with the patient and physician
community.
While additional resources are needed at NIH to conduct COPD
research, CDC has a role to play as well. To address the increasing
public health burden of COPD, the ATS encourages the CDC to create a
COPD program the Center for Chronic Disease Prevention and Health
Promotion with a recommended funding level of $6 million for fiscal
year 2009. We are hopeful that the program will include development of
a national COPD response plan, expansion of data collection efforts and
creation of other public health interventions for COPD. The ATS also
encourages the CDC to add COPD-based questions to future CDC health
surveys, including the National Health and Nutrition Evaluation Survey
(NHANES), the National Health Information Survey (NHIS) and the
Behavioral Risk Factor Surveillance Survey (BRFSS). By collecting
information on the prevalence of COPD, researchers and public health
professionals will be better able to understand and control the
disease.

PEDIATRIC LUNG DISEASE

The ATS is pleased to report that infant death rates for various
lung diseases have declined for the past 10 years. However, of the
seven leading causes of infant mortality, four are lung diseases or
have a lung disease component. In 2003, lung diseases accounted for 18
percent of all deaths under 1 year of age. The ATS encourages the NHLBI
to continue with its research efforts to study lung development and
pediatric lung diseases.
The pediatric origins of chronic lung disease extend back to early
childhood factors. For example, many children with respiratory illness
are growing into adults with COPD. In addition, it is estimated that
close to 20.5 million people suffer from asthma, including an estimated
6.8 million children. While some children appear to outgrow their
asthma when they reach adulthood, 75 percent will require life-long
treatment and monitoring of their condition. Asthma is the third
leading cause of hospitalization among children under the age of 15 and
is the leading cause of chronic illness among children.

ASTHMA

The ATS believes that the NIH and the CDC must play a leadership
role in assisting individuals with asthma. National statistical
estimates show that asthma is a growing problem in the United States.
Approximately 22.2 million Americans currently have asthma, of which
12.2 million had an asthma attack in 2005. African Americans have the
highest asthma prevalence of any racial/ethnic group. The age-adjusted
death rate for asthma in the African-American population is three times
the rate in whites.

ASTHMA SURVEILLANCE

There is a need for more data on regional and local asthma
prevalence. In order to develop a targeted public health strategy to
respond intelligently to asthma, we need locality-specific data. CDC
should take the lead in collecting and analyzing this data and Congress
should provide increased funding to build this these tracking systems.
In fiscal year 2008, Congress provided approximately $30.7 million
for CDC's National Asthma Control Program. The goals of this program
are to reduce the number of deaths, hospitalizations, emergency
department visits, school or work days missed, and limitations on
activity due to asthma. We recommend that CDC be provided with $70
million in fiscal year 2009 to expand the program and establish grants
to community organizations for screening, treatment, education and
prevention of childhood asthma.

SLEEP

Sleep is an essential element of life, but we are only now
beginning to understand its impact on human health. Several research
studies demonstrate that sleep illnesses and sleep disordered breathing
affect an estimated 50-70 million Americans. The public health impact
of sleep illnesses and sleep disordered breathing is still being
determined, but is known to include traffic accidents, lost work and
school productivity, cardiovascular disease, obesity, mental health
disorders, and other sleep-related comorbidities. We cannot
appropriately address these problems if we do not consider how chronic
sleep loss contributes to them. Despite the increased need for study in
this area, research on sleep and sleep-related disorders has been
underfunded. The ATS recommends funding level of $2 million in fiscal
year 2009 to support activities related to sleep and sleep disorders at
the CDC, including for the National Sleep Awareness Roundtable (NSART),
surveillance activities, and public educational activities. The ATS
also recommends an increase of funding for research on sleep disorders
at the Nation Center for Sleep Disordered Research (NCSDR) at the
NHLBI.

TUBERCULOSIS

Tuberculosis (TB) is a global public health crisis that remains a
concern for the U.S. Globally, one-third of the world's population is
infected with the TB germ, 9.2 million active cases develop each year
and 1.7 million people die of tuberculosis annually. The rapid spread
of drug resistant TB and the emergence of extensively drug-resistant
(XDR) TB has created a global health emergency. According to a February
2008 World Health Organization (WHO) report on drug resistant TB, about
5 percent of all new TB cases are drug resistant. The highest rates of
drug resistance can be found in former Soviet bloc countries such as
Azerbaijan and Ukraine and areas where HIV/AIDS is endemic, such as
South Africa. Because it is resistant to most of the drugs used to
treat TB, XDR-TB is virtually untreatable and has an extremely high
fatality rate. Because of the ease with which TB can spread, drug
resistant TB will continue to pose a serious risk to the United States
as long as it exists anywhere else in the world.
According to the CDC, although the overall rate of new TB cases is
declining in the United States, the annual rate of decrease in TB cases
has slowed significantly, from about 7.3 percent (1993 to 1999) to 3.8
percent currently (2000-2007). This rate represents one of the smallest
declines since 1992, when over $1 billion was spent in New York City
alone to regain control of TB. The ATS is concerned that TB rates in
African Americans remain high and that TB rates in foreign-born
Americans are growing.
While we urge immediate action in response to the drug resistant TB
global health crisis, we also recognize the best way to prevent the
future development of other resistant strains of tuberculosis is
through supporting effective tuberculosis control programs in the
United States and throughout the globe. We ask the subcommittee to take
the first steps to eliminating TB in the United States and prevent
further outbreaks of drug resistant forms of TB. The ATS, in
collaboration with Stop TB USA, recommends a funding level of $300
million in fiscal year 2009 for CDC's Division of TB Elimination.
The NIH has a prominent role to play in the elimination of
tuberculosis through the development of new tools to fight the disease,
however the ATS is concerned that the NIH has cut funding for TB
research from $158 million in 2005 to $150 million in 2006-2008. We
encourage the NIH to expand efforts to develop new tools to reduce the
rising global TB burden, including faster diagnostics that effectively
identify TB in all populations, new drugs to shorten the treatment
regimen for TB and combat drug resistance, and an effective vaccine.
Fogarty International Center TB Training Programs
The Fogarty International Center (FIC) at NIH provides training
grants to U.S. universities to teach AIDS treatment and research
techniques to international physicians and researchers. Because of the
link between AIDS and TB infection, FIC has created supplemental TB
training grants for these institutions to train international health
care professionals in the area of TB treatment and research. These
training grants should be expanded and offered to all institutions. The
ATS recommends Congress provide $70 million for FIC, which would allow
the expansion the TB training grant program from a supplemental grant
to an open competition grant.

RESEARCHING AND PREVENTING OCCUPATIONAL LUNG DISEASE

The National Institute of Occupational Safety and Health (NIOSH) is
the sole Federal agency responsible for conducting research and making
recommendations for the prevention of work-related diseases and injury.
The ATS recommends that Congress provide $253 million in fiscal year
2009 for NIOSH to expand or establish the following activities: the
National Occupational Research Agenda (NORA); tracking systems for
identifying and responding to hazardous exposures and risks in the
workplace; emergency preparedness and response activities; and training
medical professionals in the diagnosis and treatment of occupational
illness and injury.

CONCLUSION

Lung disease is a growing problem in the United States. It is this
country's third leading cause of death. The lung disease death rate
continues to climb. Overall, lung disease and breathing problems
constitute the number one killer of babies under the age of 1 year.
Worldwide, tuberculosis is one of the leading infectious disease
killers. The level of support this subcommittee approves for lung
disease programs should reflect the urgency illustrated by these
numbers. The ATS appreciates the opportunity to submit this statement
to the subcommittee. Please contact Nuala S. Moore, Sr. Legislative
Representative, at 202.296.9770, or [email protected], with any
questions concerning this statement.
______

Prepared Statement of the Arthritis Foundation

The Arthritis Foundation greatly appreciates the opportunity to
submit testimony in support of the continued federal commitment to
arthritis research at the National Institutes of Health and arthritis
public health initiatives at the Centers for Disease Control and
Prevention, which are aimed at improving the lives of 46 million adults
and 294,000 children living with arthritis in the United States.
The medical and societal impact of arthritis in the United States
is staggering. Arthritis costs the economy $128 billion, which was
equivalent to 1.2 percent of the U.S. gross domestic product in 2003.
These costs include $81 billion in direct costs for expenses like
physician visits and surgical interventions, and $47 billion in
indirect costs for missed work days. Arthritis is the most common cause
of disability in the United States, and nearly one-third of adults with
arthritis experience work limitations.
The Arthritis Foundation strongly believes that in order to prevent
or delay arthritis from impacting people and to mitigate the effects of
arthritis that an investment both from the private and public sector
must be made today. Research shows that the pain and disability of
arthritis can be decreased through early diagnosis and appropriate
management, including evidence based self-management activities such as
weight control and physical activity. The Arthritis Foundation's Self-
Help Program, a group education program has been proven to reduce
arthritis pain by 20 percent and physician visits by 40 percent. These
interventions are recognized by the Centers for Disease Control and
Prevention to reduce health care expenditures. The Arthritis Foundation
offers and partners with other organizations to offer the Self-Help
Program, and an Aquatic Program, and an Exercise Program as part of our
Life Improvement Series. Each of these programs is proven to reduce
pain and physician visits, decrease stiffness and increase function.
The public sector investment at the Federal Government level
entails the Centers for Disease Control and Prevention's arthritis
program. In early 1998, the Arthritis Foundation joined forces with the
CDC to develop the National Arthritis Action Plan--an innovative public
health strategy. Among the goals are improving the scientific
information base on arthritis, increasing awareness that arthritis is a
national health problem, and encouraging more individuals with
arthritis to seek early intervention and treatment to reduce pain and
disability. Due to the subcommittee's support and leadership, the CDC
was provided with $10 million in fiscal year 1999 to begin to make this
vision a reality. Ten years later, the CDC's arthritis program has not
kept pace and in fact, has seen a decline in funding from just a few
years ago. In fiscal year 2008, the arthritis program was funded at $13
million.
Approximately half of the CDC's arthritis program funding is
distributed through a competitive grant process, to 36 State health
departments. Over the past 5 years, these 36 State health departments
in partnership with other State organizations have successfully used
CDC funding to increase public awareness of the burden of arthritis and
increase the availability of interventions that have been proven to
improve the quality of life and health care of people with arthritis.
In 2007, a CDC convened expert panel recommended that individual State
health departments receive larger financial grants in order to maximize
the impact of the State program. The CDC is currently reviewing grant
submissions from the States and will announce later this summer which
10-18 States will receive CDC funding this year. From the previous
number of 36 States funded, this will result in between 18-26 States
losing CDC support for their arthritis program. While more efficient
and effective programs are desired in all States, the loss of programs
in a significant number of States comes at a time when the prevalence
of arthritis continues to climb. The CDC estimates 67 million or 25
percent of the adult population will have arthritis by 2030. More than
57 percent of adults with heart disease and more than 52 percent of
adults with diabetes also have arthritis. Arthritis limits the ability
of people to effectively manage other chronic diseases. It is not the
time to withdraw support, but rather a significant investment must be
made now to sustain and improve the reach of these interventions.
The Arthritis Foundation strongly recommends Congress appropriate
$23 million in fiscal year 2009 for CDC's arthritis program, which is
equivalent to 50 cents per person with arthritis. This is a $10 million
increase from fiscal year 2008, which will ensure that qualified,
participating States can continue the vital work of lessening the
burden of arthritis on Americans and the American work force.
As the Arthritis Foundation celebrates our 60th anniversary of
working to prevent, control, and cure arthritis, we have reached
several critical milestones, which have included new treatment options
and the aforementioned proven strategies in preventing the onset and
progression of the disease. However, as we take stock of these
accomplishments, it is important to remember the challenges still faced
in helping to improve the quality of life for Americans living with
arthritis, and ultimately finding a cure.
Research funded by the National Institutes of Health and the
Arthritis Foundation has produced a revolutionary class of biological
therapies that alleviate painful inflammation and prevent disability.
While these advances have changed the lives of Americans living with
arthritis significantly, there is still no cure for the disease and its
prevalence and impact continues to grow.
The Arthritis Foundation firmly believes research holds the key to
tomorrow's advances and provides hope for a future free from arthritis
pain. From its inception in 1948, a core mission of the Arthritis
Foundation is to raise funds each year to support peer-reviewed
research. Last year in 2007, the Arthritis Foundation invested $13
million in research through 179 grants, including 69 new and 110
continuing grants to researchers in over 100 academic institutions.
As the largest non-profit contributor to arthritis research, the
Arthritis Foundation fills a vital role in the big picture of arthritis
research. Our research program complements government and industry-
based arthritis research by focusing on training new investigators and
pursuing innovative strategies for preventing, controlling and curing
arthritis. To date, the Arthritis Foundation has funded more than 2,200
researchers with more than $380 million in grants. By supporting
researchers in the early stages of their careers, the Arthritis
Foundation makes important initial discoveries possible that lead to
ultimate breakthrough results. However, even with this commitment every
year grants that rate ``stellar'' in our peer review process go
unfunded. These are potential cures without the funding to be realized.
An increased public investment in biomedical research holds the
real promise of improving the lives of millions of Americans with
arthritis. This investment will reduce the burden of arthritis on the
U.S. economy with less missed work days, disability payments, and
expensive surgical interventions. To illustrate this point, less than
50 percent of working age adults with rheumatoid arthritis are still
employed 10 years after disease onset. Nearly two-thirds of people
diagnosed with arthritis are under the age of 65--750,000
hospitalizations and 36 million outpatient visits annually are due to
arthritis.
Promising research in the broad field of arthritis includes the
following examples: Osteoarthritis currently impacts 23 million
Americans and is the leading cause of hip and knee replacement. The
Osteoarthritis Initiative at NIH is a comprehensive effort to use
multiple imaging modalities, biomarkers, and genetic data to
characterize osteoarthritis incidence and progression. Importantly, it
represents a successful partnership between industry and the National
Institute of Arthritis and Musculoskeletal and Skin Diseases, which
will lead to the identification of novel biomarkers of diagnostic and
prognostic significance and to the development of new therapies.
Last year a former Arthritis Foundation grant recipient, Peter K.
Gregersen, M.D., of the Feinstein Institute for Medical Research in
Manhasset, New York, who has spent years of his professional life
analyzing the human genome, and a huge international team of
investigators, which included scientists from NIAMS, announced two
genes that impart an increased risk of developing rheumatoid arthritis.
Researchers supported in part by the Arthritis Foundation uncovered
a pathway that regulates joint destruction associated with inflammatory
arthritis. Researchers David M. Lee, M.D., Ph.D., and Michael Brenner,
M.D., of Brigham and Women's Hospital, Harvard Medical School in
Boston, along with an international team of scientists, found that
blocking the action of a protein called cadherin-11 prevents the joint
destruction that characterizes inflammatory arthritis in laboratory
mice. They are hopeful that their success in mice will lead to a new
treatment option for people with rheumatoid arthritis and other
inflammatory joint diseases.
Although cartilage is a relatively simple tissue, scientists still
face challenges in engineering and growing replacement material that
behaves like natural tissue. Arthritis Foundation-funded researcher
Farshid Guilak, Ph.D., of Duke University Medical Center, and
colleagues at Duke and at the Massachusetts Institute of Technology
have taken an important step toward surmounting these obstacles. The
team created a new framework structure upon which cartilage tissue can
be grown by developing a microscopic technology that weaves fibers in
three directions. This three-dimensional scaffold is porous so the
fabric can be seeded with cells that have been suspended in a gel. The
cell-infused fabric can then be transplanted into a damaged joint. The
plan is that the gel and fabric will eventually degrade and be absorbed
by the body, leaving only healthy, strong cartilage. If everything
progresses according to plan, a new form of engineered cartilage will
be available to treat joints damaged by osteoarthritis or other
cartilage injuries.
The mission of the National Institute of Arthritis and
Musculoskeletal and Skin Diseases is to support research into the
causes, treatment, and prevention of arthritis and musculoskeletal and
skin diseases, the training of basic and clinical scientists to carry
out this research, and the dissemination of information on research
progress in these diseases. Research opportunities at NIAMS are being
curtailed due to the stagnating and in some cases declining numbers of
new grants being awarded for specific diseases. The training of new
investigators has unnecessarily slowed down and contributed to a crisis
in the research community where new investigators have begun to leave
biomedical research careers in pursuit of other more successful
endeavors.
Sustaining the field of pediatric rheumatology is essential to the
care of 294,000 children under the age of 17 living with a form of
juvenile arthritis. Children who are diagnosed with juvenile arthritis
will live with this chronic and potentially disabling disease for their
entire life. Therefore, it is imperative that children are diagnosed
quickly and treated with the most effective treatment protocols known
for their particular disease. The establishment of a national data
collection system to ensure that the safety and effectiveness of these
treatments is essential and that they are applied in the most
beneficial manner, especially for children.
A 2007 Health Resources and Services Administration report to
Congress found that there are fewer than 200 practicing pediatric
rheumatologists in the United States, and 10 States have no specialists
at all who are qualified to diagnose and treat children with arthritis.
With this critical 75 percent shortage, it is even more important for
the existing pediatric rheumatologists to be supported and to share
their expert knowledge across the country through a national network of
cooperating clinical centers for the care and study of children with
arthritis. The Arthritis Foundation has given substantial financial
support to the development of the Childhood Arthritis and Rheumatology
Research Alliance (CARRA). However, in addition, NIAMS has a unique
opportunity to leverage its public research funds through CARRA's
capabilities, and the Arthritis Foundation urges Congress to express
support for a national network of cooperating clinical centers for the
care and study of children with arthritis.
The Arthritis Foundation is dedicated to finding a cure for
arthritis. However, the investment in NIH research is absolutely
crucial to realize this dream. With continued and increased investment
in research, the Arthritis Foundation believes a cure is on the
horizon. The Arthritis Foundation urges Congress to expand funding and
provide a $1.9 billion increase in fiscal year 2009 for NIH to continue
to fuel innovation and discoveries that could put an end to the pain of
arthritis.
The Arthritis Foundation has labored under many myths surrounding
arthritis.
--Arthritis is an inevitable part of the aging process.
--It cannot be prevented.
--There are no effective treatment options apart from taking a few
aspirin.
--Exercise is harmful for individuals with arthritis.
--Children do not get arthritis.
Today, the Arthritis Foundation is prepared with the necessary
tools, expertise, and energy to shatter these myths and capitalize on
the fruits of our collective research to help improve the lives of
Americans living with arthritis. On behalf of the 46 million adults and
nearly 300,000 children with arthritis, I urge the members of the
subcommittee and Congress to help us win the war against arthritis by
increasing critical funding for the National Institutes of Health and
the Centers for Disease Control and Prevention.
______

Prepared Statement of the Association of American Cancer Institutes

The Association of American Cancer Institutes (AACI), representing
91 of the Nation's premier academic and free-standing cancer centers,
appreciates the opportunity to submit this statement for consideration
as the Labor, Health and Human Services Appropriations Subcommittee
plans the fiscal year 2009 appropriations for the National Institutes
of Health (NIH) and the National Cancer Institute (NCI).
Sustaining progress against cancer requires a Federal commitment to
funding research through the NIH and NCI at a level that at least keeps
pace with medical inflation. Years of flat funding for the NIH and NCI
have eroded these institutions' ability to maintain their robust
research programs. For fiscal year 2009, the AACI joins its colleagues
in the biomedical research community in supporting the highest possible
appropriation NIH. We encourage Senators to honor the commitment to
biomedical research they made in voting for the Specter-Harkin
amendment to the Budget Resolution that would bring the total increase
for NIH to $3 billion over fiscal year 2008 levels. Further, AACI
respects the professional judgment of the NCI in requesting an
appropriation of $5.26 billion (an increase of $455 over fiscal year
2008 levels).

THE GROWING CANCER BURDEN

In 2008, there will be approximately 1.44 million new cases of
cancer in the United States and approximately 565,650 deaths due to the
disease.\1\ The human toll of cancer is staggering, as is its financial
toll; the NCI reports that in 2006, $206.3 billion was spent on
healthcare costs for cancer alone. Additionally, NCI acknowledges that
the burdens of cancer--physical, emotional, and financial--are
``unfairly shouldered by the poor, the elderly, and minority
populations.'' \2\ The number of cancer diagnoses will only continue to
climb as our population ages, with an estimated 18.2 million cancer
survivors (those undergoing treatment, as well as those who have
completed treatment) alive in 2020.\3\ By comparison, an estimated 11.9
million survivors were living in the United States in 2007.\2\
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\1\ Cancer Facts and Figures 2008. American Cancer Society; 2008.
\2\ The Nation's Investment in Cancer Research: An Annual Plan and
Budget Proposal for Fiscal Year 2009. National Cancer Institute, 2008.
\3\ Future Supply and Demand for Oncologists. Journal of Oncology
Practice 2007; 3(2): 79-86.
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CANCER RESEARCH: BENEFITING ALL AMERICANS

Cancer research, conducted in academic laboratories across the
country saves money by reducing healthcare costs associated with the
disease, enhances the United States' global competitiveness, and has a
positive economic impact on localities that house a major research
center. While these aspects of cancer research are important, what
cannot be overstated is the impact cancer research has had on
individuals' lives--lives that have been lengthened and even saved by
virtue of discoveries made in cancer research laboratories across the
United States.
Though over a half-million Americans will die this year from the
many diseases defined as cancer, progress is being made. Because of
continued progress made by the Nation's researchers, cancer death rates
have continued to decline; between 1991 and 2004, the death rates for
cancer in men and women declined 18.4 percent and 10.5 percent,
respectively.\4\
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\4\ Cancer Statistics, 2008. CA: Cancer Journal for Clinicians
2008; 58(2): 71-96.
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Biomedical research has provided Americans with better cancer
treatments, as well as enhanced cancer screening and prevention
efforts. Some of the most exciting breakthroughs in current cancer
research are those in the field of personalized medicine. In
personalized medicine for cancer, not only is the disease itself
considered when determining treatments, but so is the individual's
unique genetic code. This combination allows physicians to better
identify those at risk for cancer, detect the disease, and treat the
cancer in a targeted fashion that minimizes side effects and refines
treatment in a way to provide the maximum benefit to the patient.
In the laboratory setting, multi-disciplinary teams of scientists
are working together to understand the significance of the human genome
in cancer. For instance, the Cancer Genetic Markers of Susceptibility
initiative is comparing the DNA of men and women with breast or
prostate cancer with that of men and women without the diseases to
better understand the diseases. The Cancer Genome Atlas is in
development as a comprehensive catalog of genetic changes that occur in
cancer. Another initiative, the Childhood Cancer Therapeutically
Applicable Research to Generate Effective Treatments Initiative, is
identifying targets that can lead to better treatments for young people
with cancer.
These projects--along with the work being performed by dedicated
physicians and researchers across the United States every day--have the
potential to radically change the way cancer, as a collection of
diseases, affects the people who live with it every day. Every
discovery contributes to a future without cancer as we know it today.

A GENERATION OF SCIENCE AT RISK

The Nation's investment in cancer research is in jeopardy. Since
2004, the budget of the NCI has--through actual cuts and the effects of
biomedical inflation--lost 12 percent of its spending power.\2\ The
current success rate for R01 applications--the R01 is the cornerstone
grant of medical research--submitted to NIH is 25 percent; only one in
four applications submitted to NIH are funded. These funds are often
approved only after the researcher has resubmitted the application
several times. In 1999, the success rate for a first R01 submission was
29 percent; in 2007, that rate was 12 percent. The low approval rate
and lengthy delays in receiving funds have combined to raise the
average age of receiving a first R01 grant from age 39 in 1990 to age
43 in 2007.\5\
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\5\ A Broken Pipeline? Flat Funding of the NIH Puts a Generation of
Science at Risk. A Follow-up Statement by a Group of Concerned
Universities and Research Institutions, 2008.
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Because of this, young researchers--the next generation of
scientists whose novel ideas will build upon those of their seasoned
mentors--may be lost. As NIH itself states, ``New investigators are the
innovators of the future--they bring fresh ideas and technologies to
existing biomedical research problems, and they pioneer new areas of
investigation. Entry of new investigators into the ranks of
independent, NIH-funded researchers is essential to the health of this
country's biomedical research enterprise.'' \6\
---------------------------------------------------------------------------
\6\ NIH Office of Extramural Research Website: http://
grants.nih.gov/grants/new_investiga-
tors/. Retrieved 3/28/08.
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Research projects that are funded are often more conservative in
scope than those of a few years ago. Scientists who perform the
invaluable task of evaluating R01 proposals are electing to fund
conventional projects that will lead to incremental progress; these
reviewers are also less likely to fund truly ``out-of-the-box'' ideas
that may not bear fruit--but if they were successful, these ideas could
move the pace of research exponentially.\5\ In years past, funding has
been available to support both of these types of projects, a mix that
led to the rapid progress to which we have become accustomed--and that
has contributed to lengthening and improving the lives of cancer
patients around the world.

THE NATION'S CANCER CENTERS

The nexus of cancer research in the United States is the Nation's
network of cancer centers that are represented by AACI. These cancer
centers conduct the highest-quality cancer research anywhere in the
world and provide exceptional patient care. The Nation's research
institutions, which house AACI's member cancer centers, receive an
estimated $3.17 billion \7\ from NCI to conduct cancer research; this
represents 66 percent of NCI's total budget. In fact, 85 percent of
NCI's budget supports research at nearly 650 universities, hospitals,
cancer centers, and other institutions in all 50 States. Because these
centers are networked nationally, opportunities for collaborations are
many--assuring wise and non-duplicative investment of scarce Federal
dollars.
---------------------------------------------------------------------------
\7\ National Cancer Institute 2007 Fact Book. U.S. Department of
Health and Human Services, U.S. National Institutes of Health, 2007.
---------------------------------------------------------------------------
In addition to conducting basic, clinical, and population research,
the cancer centers are largely responsible for training the cancer
workforce that will practice in the United States in the years to come.
Much of this training is dependent on Federal dollars, via training
grants and other funding from NCI. Decreasing Federal support will
significantly undermine the centers' ability to continue to train the
next generation of cancer specialists--both researchers and providers
of cancer care.
By providing access to a wide array of expertise and programs
specializing in prevention, diagnosis, and treatment of cancer, cancer
centers play an important role in reducing the burden of cancer in
their communities. The majority of the clinical trials of new
interventions for cancer are carried out at the Nation's network of
cancer centers.
Stagnant funding prevents expansion at existing centers but also
prevents new centers from achieving NCI designation. While most major
metropolitan areas in the United States have easy access to an NCI-
designated cancer center, several States and many underserved areas do
not. Without enhanced funding to establish and nurture cancer centers
in these areas, far too many Americans face the burden of cancer
without the benefit of the cutting-edge care available only at a
dedicated cancer center.

ENSURING THE FUTURE OF CANCER CARE AND RESEARCH

Because of an aging population, an increasing number of cancer
survivors require ongoing monitoring and care from oncologists, and new
therapies that tend to be complex and often extend life. As a result,
demand for oncology services is projected to increase 48 percent by
2020. However, the supply of oncologists expected to increase by only
20 percent and 54 percent of currently practicing oncologists will be
of retirement age within that timeframe. Also, alarmingly, there has
been essentially no growth over the past decade in the number of
medical residents electing to train on a path toward oncology as a
specialty.\8\
---------------------------------------------------------------------------
\8\ Forecasting the Supply of and Demand for Oncologists: A Report
to the American Society of Clinical Oncology (ASCO) from the AAMC
Center for Workforce Studies. American Society of Clinical Oncology,
2007.
---------------------------------------------------------------------------
Cancer physicians--while essential--are only one part of the
oncology workforce that is in danger of being stretched to the breaking
point. The Health Resources and Services Administration predicted that
by 2020, over 1 million nursing positions will go unfilled, and a 2002
survey by the Southern Regional Board of Education projected a 12
percent shortage of nurse educators by last year.\9\
---------------------------------------------------------------------------
\9\ ONS: Ready to Collaborate with Other Policymakers to Ensure
Future of Quality Cancer Care Oncology Times, August 25, 2007; (29): 8-
9.
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Without immediate action, these predicted shortages will prove
disastrous for the State of cancer care in the United States. The
discrepancy between supply and demand for oncologists will amount to a
shortage of 9.4 to 15.1 million visits, or a shortage of 2,550 to 4,080
oncologists.\8\ The Department of Health and Human Services projects
that today's 10-percent vacancy rate in registered nursing positions
will grow to 36 percent, representing more than 1 million unfilled jobs
by 2020.\10\
---------------------------------------------------------------------------
\10\ Oncology Nursing Society Website: http://www.ons.org/lac/pdf/
correspondence/110/082807.pdf. Retrieved 3/28/08.
---------------------------------------------------------------------------
Greater Federal support for training oncology physicians, nurses,
and other professionals who treat cancer must be enacted to prevent a
disaster within our healthcare system when demand for oncology services
far outstrips the system's ability to provide adequate care for all.

AMERICANS SUPPORT FEDERAL FUNDING FOR RESEARCH

The research community has long understood the obstacles that are
facing cancer research. Though the nuances of R01 grants and oncology
workforce training may not be well understood by the average American,
the people of the United States believe in supporting the disparate
activities that make up America's biomedical research infrastructure.
In a 2007 Research!America poll, 91 percent of those surveyed
believed it was somewhat or very important for policymakers to create
more incentives to encourage individuals to pursue careers as nurses,
while 89 percent believed the same for encouraging careers as
physicians. Forty-seven percent of those surveyed agreed that the
United States must increase investment in NIH to ensure our future
health and economic security, and 54 percent favored annual 6.7-percent
increases in funding for NIH in 2008, 2009, and 2010. An overwhelming
majority--70 percent--agreed that the United States is losing its
global competitive edge in science, technology, and innovation.\11\
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\11\ Your Congress--Your Health Survey, 2007. Charlton Research
Company for Research!America, 2007.
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We encourage our Representatives in Congress to respond to the
concerns of the American people by enhancing support for biomedical
research that will lead to improved health for everyone in the United
States and around the world.

CONCLUSION

These are exciting times in science and, particularly, in cancer
research. Discoveries made today can translate to prevention methods,
treatments and even cures in the future. Research funding through the
NIH and NCI make these discoveries possible.
AACI urges the members of the Senate Committee on Appropriations,
Subcommittee on Labor, Health & Human Services, Education, and Related
Agencies to dedicate the highest possible appropriation for the NIH in
fiscal year 2009. We ask that the Senate honor the efforts of 95 of its
members who voted in favor of the Specter-Harkin Amendment to the
Budget Resolution in March. We request your support in increasing this
critical funding that will help set the pace for cancer research for
years to come.
______

Prepared Statement of the Association for Clinical Research Training

SUMMARY OF RECOMMENDATIONS FOR FISCAL YEAR 2009

At least a 6.5 percent funding increase for the National Institutes
of Health, including the National Center for Research Resources.
$700 million for the Clinical and Translational Science Awards
Program.
Continuation of the K-30 Clinical Research Curriculum Awards
Program.
$360 million for the Agency for Healthcare Research and Quality.
The Association for Clinical Research Training (ACRT) is committed
to improving the Nation's health by increasing the amount and quality
of clinical research through the expansion and improvement of clinical
research training. This training is funded by both the National
Institutes of Health (NIH) and the Agency for Healthcare Research and
Quality (AHRQ).

NATIONAL INSTITUTES OF HEALTH

As you are aware, recent years of near level-funding at the
National Institutes of Health (NIH) have negatively impacted the
mission of the National Center for Research Resources (NCRR). For this
reason, ACRT applauds efforts like Senators Tom Harkin (D-IA) and Arlen
Specter's (R-PA) adopted amendment to the fiscal year 2009 Senate
Budget Resolutions which calls on appropriators to provide NIH with a
10.3 percent funding increase. ACRT urges this Subcommittee to show
strong leadership in pursuing such a substantial funding increase.
For fiscal year 2009 ACRT is recommending a funding increase of at
least 6.5 percent for NIH and NCRR.
One of the programs hardest hit by the loss of resources that has
resulted from recent years of level funding at NIH is the Clinical and
Translational Science Awards (CTSA) program. The CTSA program aims to
meet one of the profound challenges of 21st Century medicine, namely
that the ever increasing complexities involved in conducting clinical
research are making it more difficult to translate new knowledge from
the bench to the bedside. The CTSA program transforms basic research
into clinical practice, advances information technology, integrates
research networks and improves workforce training. As Dr. Elias
Zerhouni, the Director of NIH, wrote in the October 13, 2005 edition of
the New England Journal of Medicine, ``it is the responsibility of
those of us involved in today's biomedical research enterprise to
translate the remarkable scientific innovations we are witnessing into
health gains for the Nation.''
The CTSA program is intended to assist institutions in creating a
home for clinical and translational science that has the resources
necessary to train and advance the next generation of investigators.
Originally, the program was designed to begin with 12 academic health
centers located throughout the Nation, and ultimately link 60
institutions together to energize the discipline of clinical and
translational science. However, budgetary constraints are presently
affecting the scheduled implementation of this program by reducing the
size of awards. In an effort to reach the targeted goal of 60
institutions with a continuingly diminished resource pool, NCRR has
begun reducing the size of awards to institutions by as much as 40
percent in some instances. This has created a disparity between the
size of awards given to the 12 initial institutions and those awards
given to other institutions in subsequent rounds of grants.
Additionally, it now appears that NCRR may not even have the necessary
resources to ultimately provide 60 awards.
For fiscal year 2009 ACRT is recommending a funding level of $700
million for the CTSA program, an increase of $220 million over fiscal
year 2008.
It is important to note that implementation of the CTSA program is
intended to subsume other programs, most notably the General Clinical
Research Centers (GCRC) program. Furthermore, many of the clinical
training mechanisms currently offered through the GCRC program are
scheduled to sunset or be replaced by CTSA mechanisms. Once again, the
impact of inadequate resources on the implementation of the CTSA
program has created significant challenges to maintaining clinical
research training mechanisms while transition occurs between the CTSA
and GCRC programs.
Nowhere are these challenges more apparent that within the K-30
Clinical Research Curriculum Awards (CRCA) mechanism. K-30 awards have
a track record as an exceedingly cost-effective approach to improving
the quality of training in clinical research. Presently, the CRCA
mechanism is scheduled for phase out by 2010 to reduce redundancies
with the CTSA program. However, do to the slowed implementation of the
CTSA program and the reductions in the size of awards, the CRCA program
remains essential to ensuring that a cadre of well trained clinical
researchers is maintained in order to capitalize on the many profound
developments and discoveries in basic science and to translate them to
clinical settings at research institutions.
For fiscal year 2009 and beyond ACRT is recommending continuation
of the K-30 Clinical Research Curriculum Awards mechanism for those
institutions not given an opportunity to convert to a CTSA.
Additionally, to further protect our Nation's clinical research
infrastructure, ACRT strongly opposes cuts to K-12, K-23, and K-24
Career Development Awards. These awards are crucial to generating a
pool of highly trained clinical researchers.
For fiscal year 2009 ACRT is recommending that K-12, K-23, and K-24
Career Development Awards be funded at an increased level, consistent
with biomedical research inflation.

AGENCY FOR HEALTHCARE RESEARCH AND QUALITY

AHRQ is the lead Federal agency charged with supporting research to
improve healthcare quality, reduce costs, advance patient safety,
decrease medical errors, eliminate disparities and broaden access to
essential services. AHRQ supports health services research that will
improve the quality of healthcare and improve evidence-based decision
making. The agency also transforms innovative research into cutting-
edge practices in order to facilitate wider access to effective
healthcare services.
By providing funds to train clinical researchers, AHRQ ensures that
there continues to be individuals who are able to provide the Nation
with high quality, unbiased information about healthcare. Once
consumers have this information, they will then be able to make
effective, evidence based healthcare choices. A Center for Comparative
Effectiveness Research would further leverage AHRQ's expertise in
providing this information to consumers. Subsequently, additional
resources would be required in order to train an expanded cohort of
skilled clinical researchers with expertise in the field of comparative
effectiveness.
For fiscal year 2009 ACRT is recommending a funding level of $360
million for AHRQ, an increase of $26 million over fiscal year 2008.
For fiscal year 2009 ACRT supports the appropriation of such sums
as needed to fund a robust and meaningful Comparative Effectiveness
Research initiative at AHRQ which should include clinical research
training in the area of healthcare quality, cost-effectiveness, patient
safety, access, and health disparities.
I thank you for the opportunity to present the views of ACRT.
______

Prepared Statement of the Association of Farmworker Opportunity
Programs

Good morning Chairman Harkin and members of the subcommittee. My
name is David Strauss and I represent the 51 nonprofit and public
agencies that provide job training and related services to our Nation's
migrant and seasonal farmworkers. They perform these tasks with grants
from the United States Department of Labor pursuant to section 167 of
the Workforce Investment Act. As you know, the administration has tried
to eliminate this program for the last 7 years. You and the members of
your subcommittee have led the way in maintaining it each year, and we
thank you for your leadership.
About 2.5 million people labor in the fields and farms of America,
from Hawaii to Florida and Puerto Rico, from Maine to California.
Estimates are that 85 percent of the fruits and vegetables we eat are
hand harvested by farmworkers. The pay is extremely low: most
farmworkers earn less than $12,000 per year. Few farmworkers receive
the job-related benefits, such as health insurance and sick pay, which
we all take for granted. In many States, agricultural workers are not
even eligible for unemployment compensation. While Federal law
guarantees them the minimum wage, they are exempt from overtime
provisions, regardless of how many hours per week they labor in the
fields.
They live a tough life. Many workers travel hundreds, sometimes
thousands of miles in search of work. They get paid only when they
perform the work: if the weather is bad or the crop is not as plentiful
as the farmer had hoped, they simply do not receive wages. They
typically cannot afford decent housing. Their children have to struggle
mightily to even complete their public school education. The dropout
rate for farmworker youth, especially those who migrate with their
parents, is enormous.
For over 37 years the Federal Government has made and kept a
commitment to these hardworking people. Special Federal programs were
created to recognize the reality that farmworkers often cross State
lines to work and live. Thus, we have migrant head start, migrant
health, migrant education, and the job training effort called the
National Farmworker Jobs Program. These all are federally funded and
have guidelines that acknowledge that Governors should not be placed in
a position of deciding whether or not agricultural workers qualify for
these services under State residency or other localized requirements.
Today, I want to explain the results of this program since you and
your colleagues in the Senate and the House of Representatives decided
to retain the National Farmworker Jobs Program over the White House's
opposition.
From Program Years 2001-2006, Department of Labor reports show that
123,039 eligible migrant and seasonal farmworkers enrolled and exited
the program. I might add that to be eligible, a person must have earned
a majority of his/her income in agricultural work, must be a United
States citizen or have proof of work authorization, and must have
earnings no greater than the Federal poverty level. And as a measure of
their dedication to work as their means of livelihood, a very small
percentage receives TANF or other forms of cash assistance.
Of the 123,039 enrolled, some received a service or item that
allowed them to survive until their next payday. Many enrolled to get
help to find a better job. Most of that group found that they need
considerable training to really increase their earning power. During
the period 2001-2006, 38,201 farmworkers got good jobs with benefits
and some measure of job security. Most of these workers were unemployed
and took rigorous training into new professions, such as over the road
driving, welding, health care, or other non-agricultural work. About 8
percent were trained into higher-level jobs in agriculture in which
they received better pay and benefits. Almost 80 percent stayed in
those jobs during the 6 months following placement and on average they
earned over $10,000 more in their first year of new employment than
they had the previous year. When you consider how low the poverty level
is, that is an astounding increase in living standard.
Those retention and earnings data are incredible figures for any
job-training program, but are especially noteworthy when you consider
the barriers that so many farm laborers face. They typically have less
than an 8th grade education. Most report that their primary language is
Spanish. Many migrate from State to State in search of work, making it
difficult to participate in a training program that may last several
months. Their extremely low incomes also make it a challenge to
participate, even though they can receive a minimum wage stipend during
training. It can be a daunting task to participate in English language
classes, learn a new trade, purchase special clothing or equipment,
while still providing basic necessities so that their families can
survive during the training period.
Our member agencies provide the supportive services and counseling
that farmworkers need to learn their new skills and market themselves
to new employers. They do all this with skill, passion and energy.
Those come from within--many people who staff the National Farmworker
Jobs Program were once farmworkers themselves, and they can identify
with and understand the needs, hopes and fears of their ``customers.''
However, no matter how dedicated and skilled these staff people may
be, they could not do the life-changing work they perform every day
without the grants their agencies receive from the Department of Labor.
And these agencies must compete for these grants every 2 years. There
is no job security for the staff that operates this program, but they
nonetheless continue to perform their jobs with the dedication and
perseverance necessary to properly serve the people who provide the
food for America's tables.
In turn, the grants could only be possible with a national program,
for the reasons stated earlier. And you are the people who have made
those grants a reality by refusing to accept the Bush administration's
position that this program is not needed. The 38,201 farmworkers whose
lives have dramatically changed because the National Farmworker Jobs
Programs was there when they needed it are grateful to you and your
colleagues for recognizing and supporting their fight to achieve the
American Dream.
And on behalf of our 51 member agencies that operate this
successful program, I thank you as well. I ask that you continue to
retain this program in the appropriations bill for the Department of
Labor for Program Year 2009 and expand the funding to $107 million to
permit more young farmworkers to break the cycle of poverty into which
they were born.
For further information contact: David Strauss, Executive Director
Association of Farmworker Opportunity Programs1726 M Street N.W.
Suite 800
Washington, D.C. 20036
Telephone: (202) 828-6006, ext 101
Email: [email protected]
______

Prepared Statement of the Association of Independent Research
Institutes

The Association of Independent Research Institutes (AIRI)
respectfully submits this written statement for the fiscal year 2009
Public Record to the Senate Appropriations Subcommittee on Labor,
Health and Human Services, Education and Related Agencies.
AIRI is a national organization of approximately 90 independent,
non-profit research institutes that perform basic and clinical research
in the biological and behavioral sciences. Our member institutes are
private, stand-alone research centers that set their sights on the vast
frontiers of medical science. AIRI institutes vary in size, with
budgets ranging from a few million to hundreds of millions of dollars.
In addition, each AIRI member institution is governed by its own
independent Board of Directors, which allows our members to be
structurally nimble and capable of adjusting their research programs to
emerging areas of inquiry. While the primary function of AIRI
institutes is research, most are strongly involved in training the next
generation of biomedical researchers. In a testament to the quality of
research and innovative ideas that AIRI institutes bring to the
national biomedical enterprise, our institutions consistently exceed
the success rates of the overall National Institutes of Health (NIH)
grantee pool, and receive about 11 percent of NIH's peer reviewed,
competitively awarded extramural grants. On average, AIRI member
institutes receive a total of $1.6 billion in extramural grants from
NIH in any given year.
The doubling of the NIH budget over 1998_2003 allowed the
biomedical research community to accelerate solutions to human disease
and disability. We have blazed new trails for medical research, delving
into the intricacies of how the human body musters its defenses and of
how those responses can be evaluated, enhanced, and modified. In
addition, increased funding at NIH has helped us to realize new
scientific management strategies such as fostering interdisciplinary
research and creating new robust teams of scientists that, before the
doubling, did not have scientific common ground. These research teams
navigate the fast progressing research environment where there is an
increasing need to integrate and aggregate basic research,
computational capabilities, and clinical evidence into new therapies
and cures more quickly. Further, Federal investment in NIH has helped
us to redefine health and healthcare goals based on scientific
discoveries that were out of reach prior to the doubling. We now
discuss disease and healthcare in terms of developing new predictive,
preventative and pre-emptive tactics.
Last year, AIRI endorsed the fiscal year 2008 Ad Hoc Group for
Medical Research proposal to increase the NIH budget by 6.7 percent
over each of the next three fiscal years, fiscal year 2008-fiscal year
2010. At the time, we recognized that competing budget priorities put
pressure on Congress to face difficult funding trade-offs yet we asked
the subcommittee to adopt a long-term commitment to NIH. As you are
aware, the final fiscal year 2008 appropriation for NIH was a
disappointment to your subcommittee and the rest biomedical research
community. For the fifth straight year, NIH funding failed to match
even the pace of biomedical inflation.
Unfortunately, the President's fiscal year 2009 budget request for
NIH continues this flat funding trend for the agency for the sixth
straight year. If the President's fiscal year 2009 request is enacted,
the agency will have lost over 13.4 percent of its purchasing power
during this time period when taking into account the anticipated 3.5
percent biomedical inflation rate for this year. As such, AIRI joins
its colleagues in the biomedical community in calling for a $1.9
billion (6.6 percent) increase in NIH's total discretionary budget for
fiscal year 2009.
The NIH-funded research conducted at independent research
institutes and other institutions across the Nation is important for
curbing projected dramatic increases in U.S. healthcare costs over the
long term. Sustained, multi-year Federal funding commitments will be
critical to forestalling the onset of diseases such as heart disease
and stroke, Alzheimer's disease, mental health disorders, and cancer as
80 million baby boomers begin to retire and face the diseases of aging.
NIH-funded research has had an enormous impact and remains a
cornerstone in the Nation's battle against existing and emerging
diseases. Flat funding for the agency reduces NIH's ability to meet the
research demands of the Nation and slows the medical advances that can
be made by the entire research community.
In addition to funding for NIH biomedical research overall, AIRI
hopes that the subcommittee will continue to support programs and
policies championed by NIH Director Dr. Zerhouni that foster a
sustainable, biomedical research workforce. The biomedical research
community is dependent upon a knowledgeable and skilled workforce to
address current and future critical health research challenges. The
cultivation and preservation of this workforce is dependent upon
several factors, including the ability to: recruit scientists and
students globally; train researchers both in basic and clinical
biomedical research; develop and retain researchers at critical stages
during their early careers; support new and young investigators; and
maintain the NIH extramural investigator salary cap at Executive Level
I. As we work to enhance biomedical research capabilities, we should
not impose barriers that would discourage talented people from
committing to careers in research. The recruitment and development of
these scientists will be a key to sustaining our national
competitiveness.
Additionally, AIRI urges Congress to support NIH extramural shared
instrumentation and equipment grant programs. As the investment in
medical research and the national biomedical research agenda have
expanded, the need for acquisition and modernization of laboratory
equipment and infrastructure has become critical. NIH equipment grants
meet the specific infrastructure needs of research institutions to
maximize productivity of their research grants. These grants aid in the
attainment of state-of-the-art research tools that allow U.S.
laboratories to investigate biomedical questions on the cutting edge of
science.
Medical research is a long-term process and, in order to meet the
challenges of improving human health, curbing rising healthcare
expenditures, and securing a global leadership role in the life
sciences, we must increase our Federal commitment and investment in
NIH. It is essential to sustain the momentum of NIH-funded research so
that it continues to meet the goal of improving the health of all
Americans.
AIRI would like to thank the subcommittee for its important work to
ensure the health of the Nation, and we appreciate this opportunity to
present recommendations concerning the fiscal year 2009 Appropriations
bill in the fiscal year 2009 Public Record.
______

Prepared Statement of the Association of Maternal and Child Health
Programs

The Association of Maternal and Child Health Programs (AMCHP) is
pleased to submit this testimony in support of fully funding the
Maternal and Child Health (MCH) Services Block Grant at $850 million in
fiscal year 2009. When our children are healthy, they are more likely
to succeed. MCH programs help promote our children's success by
identifying emerging and urgent health needs, while continuing to
assure services like prenatal care, immunizations and access to health
services. The MCH Block Grant provides funding to State MCH agencies,
which directly serve almost 35 million women and children in the U.S.
State MCH programs reach millions more through support of population-
wide programs that reach all women and children, such as newborn
screening for genetic disorders, lead poisoning prevention, injury
prevention, and public education.
AMCHP supports full funding of the MCH Block Grant to enable States
to:
--Provide and enable access to comprehensive preconception, prenatal
and postnatal health care and public health services that
reduce infant mortality and improve the overall health of
mothers and children
--Ensure access to quality health care through enabling services such
as transportation and translation
--Increase the number of children receiving health assessments and
follow-up diagnostic and treatment services
--Provide and ensure access to preventive and rehabilitative services
for children, including immunizations, screenings, nutrition
and dental education and mental health services
--Implement family-centered and community-based systems of
coordinated health care for children and youth with special
health care needs
--Partner with schools, youth service groups, and other agencies and
organizations to prevent behaviors that place youth at risk.
In 2002, funding for the MCH Block Grant peaked at $731 million and
has been level funded or reduced ever since. The fiscal year 2008
omnibus appropriations bill cut funding to $666 million. This alarming
reduction threatens the progress States have made in improving the
health of mothers, children, and families. When Title V of the Social
Security Act was passed in 1935, the Federal Government pledged its
support of State efforts to extend and improve health and welfare
services for mothers and children. The MCH Block Grant today remains
the only Federal program that focuses solely on improving the health of
all mothers and children. The reduction of Federal support for this
vital program in recent years represents an alarming gap in the
Federal-State partnership needed to assure the health of all women,
children, and families in the America.
AMCHP members report that reductions to the MCH Block Grant require
cutbacks in needed services at the State and local level. Reductions to
the MCH Block Grant erode the remarkable successes that have been made
in improving the health of mothers and children over the past half
century. For example, today the infant mortality rate is 77 percent
lower than in 1950, immunization rates have reached historic highs,
childhood deaths from injuries are down dramatically, and most children
report having a usual source of health care. Despite this substantial
progress, consider the following troubling trends in the health of our
Nation's mothers and children:
--Over the past decade, improvements in reducing maternal and infant
mortality have stalled and preterm and low birth weight births
have increased. Today the United States ranks 29th in infant
mortality rates in international comparisons.
--Racial and ethnic disparities persist across several health status
indicators, and the black infant mortality rate is double the
rate for whites.
--Teen pregnancy rates rose in 2007 for the first time in 14 years.
--Childhood obesity is a national epidemic requiring urgent public
health intervention, with some age groups experiencing a
threefold obesity rate increase over the past two decades.
Considering these and many other urgent health needs, we ask for
your leadership in supporting full funding for the MCH Block Grant at
$850 million in fiscal year 2009.
The MCH Block Grant improves the health of America's women and
children by:
--Supporting programs that work. The MCH Block Grant earned the
second highest program rating by the Office of Management and
Budget (OMB)'s Program Assessment Rating Tool (PART). OMB found
that MCH Block Grant-funded programs helped to decrease the
infant mortality rate, prevent disabling conditions, increase
the number of children immunized, increase access to care for
uninsured children, and improve the overall health of mothers
and children. The program has performance measures and
evaluations that document the effective impact of this modest
investment in innovative approaches. Reduction to the MCH Block
Grant threatens the ability of these programs to carry on this
work.
--Addressing the growing needs of women, children and families. As
States face economic hardships and face limits on their
Medicaid and SCHIP programs, more women and children seek care
and services through MCH-funded programs. Resources are needed
to reduce infant mortality, provide mental health care to those
in need, improve oral health care, reach more children and
youth with special health care needs, and reduce racial
disparities in health care.
--Supporting health systems and leveraging Federal funding for other
health programs such as community health centers, Healthy
Start, WIC, Combating Autism, SCHIP and Medicaid. The MCH Block
Grant invests in State needs assessments, planning and policy
development, quality assurance and standards development,
training, collection of health care data and analysis, and
development of information systems that complement health care
services and promote prevention for all populations. Close
coordination with other health programs assures that funding is
maximized and services are not duplicated.
Over the years, the achievements of MCH Block Grant-supported
projects have been integrated into the ongoing care system for children
and families. Landmark projects have produced guidelines for child
health supervision from infancy through adolescence; influenced the
nature of nutrition care during pregnancy and spread the message about
the benefits of breastfeeding; recommended standards for prenatal care;
identified successful strategies for the prevention of childhood
injuries; and developed health safety standards for out-of-home child
care facilities.
During the Senate's debate on the fiscal year 2009 budget
resolution, Senator Chris Dodd introduced a bi-partisan amendment co-
sponsored by Senator Orin Hatch that called for full funding of the MCH
Block Grant. Upon introducing the amendment, Senator Dodd stated:
The MCH program is critical to the health and well-being of
millions of families across this country, including some of the most
vulnerable members of our society. Years of funding cuts and level
funding have stretched maternal and child health programs to their
limits . . . The MCH block grant is a proven success for helping ensure
a healthy future for our Nation's children [and] I urge my colleagues
to support my amendment to increase MCH block grant funding to $850
million in this year's budget resolution.
This amendment passed the Senate by unanimous consent, and over 30
national organizations have joined in support of full funding (see
attached letter).
AMCHP urges the Senate to recognize the need for additional
resources for States and their partners to continue this vital work. We
request your support and leadership to fully fund the Title V Maternal
and Child Health Services Block Grant at $850 million for fiscal year
2009. Full funding for the MCH Block Grant is an effective and
efficient investment in our Nation's women, children, and families.
______

Prepared Statement of the Association for Psychological Science

SUMMARY OF RECOMMENDATIONS

--As a member of the Ad Hoc Group for Medical Research Funding, APS
recommends $31.1 billion for NIH in fiscal year 2009.
--APS requests committee support for behavioral and social science
research and training as a core priority at NIH in order to:
better meet the Nation's health needs, many of which are
behavioral in nature; realize the exciting scientific
opportunities in behavioral and social science research, and;
accommodate the changing nature of science, in which new fields
and new frontiers of inquiry are rapidly emerging.
--Given the critical role of basic behavioral science research and
training in addressing many of the Nation's most pressing
public health needs, we ask the committee to ensure that the
National Institute of Mental Health coordinates with other NIH
Institutes to provide support for basic behavioral science
research.
--APS encourages the committee to review behavioral science
activities at individual institutes. Examples are provided in
this testimony to illustrate the exciting and important
behavioral and social science work being supported at NIH.
Mr. Chairman, members of the committee: As our organization's name
indicates, APS is dedicated to all areas of scientific psychology, in
research, application, teaching, and the improvement of human welfare.
Our 20,000 members are scientists and educators at the Nation's
universities and colleges, conducting NIH-supported basic and applied,
theoretical and clinical research. They look at such things as: the
connections between emotion, stress, and biology and the impact of
stress on health; they look at how children grow, learn, and develop;
they use brain imaging to explore thinking and memory and other aspects
of cognition; they develop ways to manage debilitating chronic
conditions such as diabetes and arthritis as well as depression and
other mental disorders; they look at how genes and the environment
influence behavioral traits such as aggression and anxiety; and they
address the behavioral aspects of smoking and drug and alcohol abuse.
As a member of the Ad Hoc Group for Medical Research Funding, APS
recommends $31.1 billion for NIH in fiscal year 2009, an increase of
6.5 percent over the fiscal year 2008 appropriations level. This
increase would halt the erosion of the Nation's public health research
enterprise, and help restore momentum to our efforts to improve the
health and quality of life of all Americans.
Within the NIH budget, APS is particularly focused on behavioral
and social science research and the central role of behavior in health.
The remainder of this testimony concerns the status of those areas of
research at NIH.

HEALTH AND BEHAVIOR: THE CRITICAL ROLE OF BASIC AND APPLIED
PSYCHOLOGICAL RESEARCH

Behavior is a central part of health. Many leading health
conditions--such as heart disease; stroke; lung disease and certain
cancers; obesity; AIDS; suicide; teen pregnancy; drug abuse and
addiction; depression and other mental illnesses; neurological
disorders; alcoholism; violence; injuries and accidents--originate in
behavior and can be prevented or controlled through behavior.
As just one example: stress is something we all feel in our daily
lives, and we now have a growing body of research that illustrates the
direct link between stress and health problems: chronic stress
accelerates not only the size but also the strength of cancer tumors;
mounting evidence indicates that chronic stressors weaken the immune
system to the point where the heart is damaged, paving the way for
cardiac disease; children who are genetically vulnerable to anxiety and
who are raised by stressed parents are more likely to experience
greater levels of anxiety and stress later in life; animal research has
shown that stress interferes with working memory; and stressful
interactions may contribute to systemic inflammation in older adults,
which in turn extends negative emotion and pain over time.
None of the conditions or diseases described above can be fully
understood without an awareness of the behavioral and psychological
factors involved in causing, treating, and preventing them. Just as
there exists a layered understanding, from basic to applied, of how
molecules affect brain cancer, there is a similar spectrum for
behavioral research. For example, before you address how to change
attitudes and behaviors around AIDS, you need to know how attitudes
develop and change in the first place. Or, to design targeted therapies
for bipolar disorder, you need to know how to understand how circadian
rhythms work as disruptions in sleeping patterns have been shown to
worsen symptoms in bipolar patients.

Prevention and Health: Changing Behavior
Earlier this year in Labor HHS Subcommittee hearings, your
colleagues in the House asked health experts why Americans, who know
they need to stop smoking, eat better and exercise to be healthy,
continue to engage in these detrimental behaviors. As the Partnership
to Fight Chronic Disease has said, it all boils down to changing
behavior. In this era of flat funding for NIH and a severely restricted
discretionary budget, preventive health care that has real cost offsets
have received a great deal of attention. The Centers for Disease
Control and Prevention has said that ``the United States cannot
effectively address escalating health care costs without addressing the
problem of chronic diseases,'' and the Milken Institute estimates the
annual economic impact of preventable chronic diseases on the U.S.
economy to be more than $1 trillion. Fully 75 percent of our current
healthcare spending goes towards chronic diseases, the vast majority of
which could be better prevented or managed.
Only a tiny fraction of health-care spending is devoted to the
promotion of healthier behavior, even though health care experts agree
that moderate improvements in prevention would result in enormous
savings to the economy. The Milken Institute's major policy
recommendations include promoting healthy lifestyles and disease
prevention. If we can reduce obesity and smoking in this country, we'd
save $60 billion over the next 15 years. The Partnership to Fight
Chronic Disease agrees that behavioral factors play a critical role in
this surging trend, and that prevention focusing on these factors
should be the starting point of any campaign to reduce the incidence of
these debilitating conditions.
Let me illustrate how critical behavioral research is to
prevention: Basic decision science research elucidates the cognitive,
emotional, and social factors that influence judgment and choice, and
how judgment and decision-making can be predicted and improved. This
research plays a central role in health education by identifying the
most effective ways to frame messages that will encourage behavior
change. For example, fundamental cognitive research has shown that for
certain kinds of prevention efforts, public health information is best
conveyed in a ``gain-framed'' message (e.g., ``if you regularly apply
sunscreen you'll help prevent skin cancer,'' versus ``if you don't
apply sunscreen, you increase your risk for skin cancer''), whereas
early detection strategies should be conveyed in a ``loss-framed'' way
(e.g., ``if you don't get a mammogram, tumors can't be detected early,
and the later the detection of cancer, the fewer the treatment
options.''). Additional research has shown that the influence of
message framing on health behavior is also related to the type of
behavior being promoted: People are risk-seeking when they consider
losses and risk-averse when they consider gains, which is directly
applicable to decision making related to health. This finding has been
the basis for a new generation of tailored health-related public
service messages that advance the goal of encouraging people to protect
their health.
While ``prevention'' has been the buzzword in Congress and health
advocacy circles, and there are well-intended programs aimed at
reducing health problems, we need to ensure that health promotion
strategies are grounded in scientific understanding of how people
process information and make decisions.

Basic Behavioral Science Research Needs A Stable Infrastructure
Broadly defined, behavioral research explores and explains the
psychological, physiological, and environmental mechanisms involved in
functions such as memory, learning, emotion, language, perception,
personality, motivation, social attachments, and attitudes. Within
this, basic behavioral research aims to understand the fundamental
nature of these processes in their own right, which provides the
foundation for applied behavioral research that connects this knowledge
to real-world concerns such as disease, health, and life stages. Basic
behavioral research continues to fare poorly at NIH, a circumstance
that jeopardizes the success of the entire behavioral research
enterprise. Let us remind you of the current situation:
Traditionally, the National Institute of Mental Health (NIMH) has
been the home for far more basic behavioral science than any other
institute. Many basic behavioral and social questions were being
supported by NIMH, even if their answers could also be applied to other
institutes. In recent years, NIMH has begun to aggressively reduce its
support for many areas of the most basic behavioral research, in favor
of translational and clinical research. This means that previously
funded areas now are not being supported.
NIMH's abrupt decision to narrow its portfolio came without
adequate planning and is happening at the expense of critical basic
behavioral research. We favor a broader spectrum of support for basic
behavioral science across NIH as appropriate and necessary for a vital
research enterprise. But until other Institutes have the capacity to
support more basic behavioral science research connected to their
missions, programs of research in fundamental behavioral phenomena such
as cognition, emotion, psychopathology, perception, and development,
will continue to languish. The existing conditions for basic behavioral
science research undermine the scientific community's efforts to
address many of the Nation's most pressing public health needs. We ask
the committee to ensure that NIMH coordinates with other NIH Institutes
to support basic behavioral research and training at NIH.
Despite the clear central role of behavior in health, behavioral
research has not received the recognition or support needed to prevent,
or reverse the effects of, behavior-based health problems in this
Nation. APS asks that you continue to help make behavioral research
more of a priority at NIH, both by providing maximum funding for those
institutes where behavioral science is a core activity, by encouraging
NIH to advance a model of health that includes behavior in its
scientific priorities, and by encouraging stable support for basic
behavioral science research at NIH.

BEHAVIORAL SCIENCE AT KEY INSTITUTES

In the remainder of this testimony, we highlight examples of
cutting-edge behavioral science research being supported by individual
institutes.
National Cancer Institute (NCI).--NCI's Behavioral Research Program
continues to make excellent progress, supporting basic behavioral
research as well as translational research on the development and
dissemination of interventions in areas such as tobacco use, dietary
behavior, sun protection, and decision-making. With current focus on
prevention in health care, NCI's ongoing program in decision-making
exemplifies the relationship between basic and applied behavioral
research. One study this program funds is testing health behavior
interventions that can be broadly applied across sociodemographic
populations. Researchers are experimenting with methods of
communicating risk and statistics information to women at high risk for
breast cancer. These messages draw from a foundation of basic
behavioral and social science research into such issues as how people
learn and remember health information, how they perceive health risks,
and how they are persuaded to adopt healthy behaviors. APS asks
Congress to support NCI's behavioral science research and training
initiatives and to encourage other Institutes to use these programs as
models.
National Institute on Aging (NIA).--One of NIA's major initiatives
is the ACTIVE (Advanced Cognitive Training for Independent and Vital
Elderly) trial, which aims to halt the decline of cognitive functioning
in older adults. Without good mental capabilities, this population will
lose its ability to live independently, which in turn places an
enormous burden on an already stressed healthcare system. This landmark
study showed that brief mental exercises produced long-lasting
improvements years later, which has profound implications for
intervention design. These results show that basic behavioral and
cognitive science, when it underlies sound interventions that help
people in real time, has a very real impact. APS asks the committee to
support NIA's behavioral science research efforts and to increase NIA's
budget in proportion to the overall increase at NIH in order to
continue its high quality research to improve the health and wellbeing
of older Americans.
National Institute on Drug Abuse (NIDA).--By supporting a
comprehensive research portfolio that stretches across basic
neuroscience, behavior, and genetics, NIDA is leading the Nation to a
better understanding and treatment of drug abuse. We still know very
little about the ways in which social influences interact with the
unique adolescent brain to increase vulnerability to drug abuse. New
research supported by NIDA is examining events in brain development
that change with exposure to drugs as well as to risky behavior.
Researchers are asking how these behavioral and neurobiological changes
during this stage of development may be uniquely sensitive to the
problems of drug abuse behavior. If we can better understand the
effects structural brain changes have on functions like thinking,
decision-making, sensation and perception we will be able to better
develop targeted and more likely effective prevention strategies from
the brain development perspective. APS asks this committee to support
this and other critical behavioral science research at NIDA, and to
increase NIDA's budget in proportion to the overall increase at NIH in
order to reduce the health, social and economic burden resulting from
drug abuse and addiction in this Nation.
National Institute of Dental and Craniofacial Research (NIDCR).--
Several Institutes are increasingly recognizing the value and relevance
of basic behavioral research to their mission. NIDCR is to be
particularly commended for their support of behavior and oral health
research. As we've made explicit throughout this testimony, behavior
impacts every aspect of health, and oral health is no exception--to
that end, NIDCR is funding basic research on theoretical models that
get beyond simple cause-and-effect relationships in behavior. By
identifying new ways to conceptualize behavioral and social
contributors to oral health, researchers can better identify potential
targets for more efficient interventions to help Americans maintains
good oral health. APS asks Congress to support NIDCR's emerging
behavioral science research portfolio and to encourage other Institutes
to use this program as a model for how basic behavioral research can
greatly facilitate achieving their research goals.
It's not possible to highlight all of the worthy behavioral science
research programs at NIH. In addition to those reviewed in this
statement, many other institutes play a key role in the NIH behavioral
science research enterprise. These include the National Institute for
Child Health and Human Development, the National Institute of Mental
Health, the National Institute on Alcohol Abuse and Alcoholism, the
National Heart, Lung, and Blood Institute, and the National Institute
of Diabetes and Digestive and Kidney Diseases. Behavioral science is a
central part of the mission of these institutes, and their behavioral
science programs deserve the committee's strongest possible support.
This concludes our testimony. Again, thank you for the opportunity
to discuss NIH appropriations for fiscal year 2009 and specifically,
the importance of behavioral science research in addressing the
Nation's public health concerns. I would be pleased to answer any
questions.
______

Prepared Statement of the Association for Research in Vision and
Ophthalmology (ARVO)

ABOUT ARVO

ARVO, the world's largest association of physicians and scientists
who study diseases and disorders affecting vision and the eye, has more
than 12,300 members from the United States and 73 countries. As some 80
percent of the 7,000 United States members have or are affiliated with
NIH grants, ARVO submits these comments supporting increased fiscal
year 2009 NIH and NEI funding.

ARVO REQUESTS FISCAL YEAR 2009 NIH FUNDING AT $31 BILLION, OR A 6.6
PERCENT INCREASE OVER FISCAL YEAR 2008, TO MATCH INFLATION/RESTORE
PURCHASING POWER AND FUND YOUNG INVESTIGATORS/CLINICIAN SCIENTISTS

NIH is a world-leading institution and must be adequately funded so
that its research can reduce healthcare costs, increase productivity,
improve quality of life, and ensure our Nation's global
competitiveness. Although ARVO commends the Congressional leadership's
actions to significantly increase NIH funding above the
Administration's budget request in fiscal year 2008 appropriations, the
net 0.46 percent increase meant a net loss in NIH purchasing power. For
5 consecutive years, NIH funding has failed to keep pace with the
biomedical inflation rate and NIH has lost more than 10 percent of its
purchasing power. The administration's fiscal year 2009 budget, which
proposes to freeze the NIH budget at the fiscal year 2008 level,
threatens to further hinder the momentum of discovery leading to
treatments that are saving lives--as well as restoring the quality of
life--and maintaining the Nation's competitive edge in medical
research.
Adequate NIH funding is also essential to a strong and vibrant
research community, which risks losing established investigators and
failing to attract young scientists. The NIH funding situation
threatens to affect an entire generation of young researchers. As noted
in the March 2008 report entitled A Broken Pipeline? Flat Funding of
the NIH Puts a Generation of Science at Risk and in March 13, 2008,
House LHHS Appropriations Subcommittee Citizen Witness hearing
testimony presented by the Federation of American Societies for
Experimental Biology (FASEB), the 60,000 postdoctoral researchers who
represent America's scientific future and are on the path to a lifelong
career in research are being negatively affected by the decline in
NIH's budget. This impact includes:
--Fewer hires, lower salaries, and increased layoffs in the research
community
--Young scientists seeing their mentors struggle to maintain grant
funding
--Students seeking job opportunities outside of research or in other
countries
--An appreciable drop in applications in 2007 from 2006--by nearly
600--of R01 grant applications by previously unfunded
researchers (``new investigators'')
--An increase in the average age from 34.2 to 41.7 years for
investigators who receive their first research project grant
award
These concerns are especially acute for the eye and vision research
community, especially for its clinician scientists, who have been so
instrumental to the NEI's impressive track record of the translation of
basic research into clinical applications that directly benefit patient
care.

ARVO REQUESTS FISCAL YEAR 2009 NEI FUNDING AT $711 MILLION, OR A 6.6
PERCENT INCREASE OVER FISCAL YEAR 2008, TO ENSURE ALL AMERICANS' VISION
HEALTH

The NEI was flat funded in fiscal year 2008, meaning that over the
past five funding cycles it has lost 18 percent of its purchasing
power, reducing the number of grants by 160, which threatens its
impressive record of breakthroughs in basic and clinical research that
have resulted in treatments and therapies to save and restore vision,
as well as to prevent eye disease. Vision impairment/eye disease is a
growing, major public health problem that disproportionately affects
the aging and minority populations, costing the United States $68
billion annually in direct and societal costs, let alone reduced
independence and quality of life. Adequately funding the NEI is a cost-
effective investment in our Nation's health, as it can delay, save, and
prevent expenditures.

FISCAL YEAR 2009 NEI FUNDING AT $711 MILLION ENABLES IT TO LEAD
COLLABORATIVE RESEARCH REFLECTING THE NEW PARADIGM OF 21ST CENTURY
HEALTHCARE THAT IS PREDICTIVE, PREEMPTIVE, PERSONAZLIED, AND
PARTICIPATORY

NEI research addresses the NIH's overall major health challenges as
set forth by NIH Director Elias Zerhouni, M.D.: an aging population;
health disparities; the shift from acute to chronic diseases; and the
co-morbid conditions associated with chronic diseases (e.g., diabetic
retinopathy as a result of the epidemic of diabetes). NEI research
responds to Dr. Zerhouni's vision for NIH research that is
collaborative and cost-effective and meets the 21st century
``P4Medicine'' paradigm of predictive, preemptive, personalized, and
participatory research and clinical practice. For example:
--One-quarter of all genes identified to date through NEI's
collaboration with the Human Genome Project is associated with
eye disease, such as age-related macular degeneration (AMD),
retinitis pigmentosa (RP), and glaucoma. NEI-funded researchers
have discovered gene variants strongly associated with an
individual's risk of developing AMD, the leading cause of
blindness in older Americans. These variants, responsible for
about 60 percent of the cases of AMD, are associated with the
body's inflammatory response and may relate to other
inflammation-associated diseases, such as Alzheimer's and
Parkinson's.
--NEI is currently conducting the second phase of its Age-Related Eye
Disease Study (AREDS), which follows up on initial findings
that high levels of dietary zinc and antioxidant vitamins
(Vitamins C, E and beta-carotene) are effective in reducing
vision loss in people at high risk for developing advanced
AMD--by a magnitude of 25 percent. NEI estimates that 1.3
million Americans would develop advanced AMD if no treatment
was given, and if all individuals at risk engaged in the AREDS
supplement regimen, more than 300,000 of them would avoid
advanced AMD and any associated vision loss during the next 5
years.
--NEI's collaborative research into factors that promote or inhibit
new blood vessel growth has resulted in the first generation of
ophthalmic drugs approved by the Food and Drug Administration
(FDA) to inhibit abnormal blood vessel growth in ``wet'' AMD,
thereby stabilizing and restoring vision, and NEI's Diabetic
Retinopathy Clinical Research (DRCR) Network is further
evaluating these drugs for treatment of macular edema
associated with diabetic retinopathy (DR).
These examples primarily reflect NEI's trans-Institute research
within NIH. The NEI has also collaborated with other Department of
Health and Human Services (DHHS) agencies, specifically to share the
results of its basic and clinical research which may impact the product
approval and reimbursement processes. For example:
--In a March 2008 meeting, NEI collaborated with FDA's drug and
device Centers to consider the appropriateness of new clinical
endpoints in glaucoma clinical trials. Advances in visual
imaging technologies--many of which emerged from collaborative
research between the NEI and the National Institute of
Biomedical Imaging and Bioengineering (NIBIB)--have enabled
researchers to better detect structural changes in the nerve
fiber layer of the retina and contours of the optic nerve head.
These structural changes could potentially be used as a direct
endpoint in a clinical trial, rather than a surrogate endpoint
such as elevated intra-ocular pressure, when appropriately
correlated to functional changes in vision to assure clinical
significance of a new therapy. This meeting, which followed a
November 2006 joint NEI-FDA meeting on clinical endpoints in
AMD and DR clinical trials, represents the cost-effectiveness
of NEI funding, as its research results may ultimately shorten
the time and cost associated with clinical trials and
facilitate approval of new diagnostics/therapies.
--In collaboration with the Centers for Medicare and Medicaid
Services (CMS), NEI has launched the Comparison of AMD
Treatments Trial (CATT), a comparative effectiveness study of
the two drugs used to block growth of abnormal blood vessels in
patients with the ``wet'' form of AMD. NEI's collaboration with
CMS could guide clinical practice and reduce costs to the
Medicare program.

THE NEI'S DIMINISHED PURCHASING POWER JEOPARDIZES ITS ABILITY TO FOLLOW
UP ON RESEARCH BREAKTHROUGHS FROM PAST INVESTMENT

Congress must adequately fund NEI so it can initiate promising new
research, pursue results that have emerged from previous breakthroughs,
and offer up its ``fair share'' of funding in its extensive
collaborations. The number of NEI grants has declined by 160 over the
past five years, from 1,214 in fiscal year 2004 to 1,054 in fiscal year
2008, representing myriad ``lost opportunities''--any one of which
could have been the key to curing eye disease or restoring vision.
Examples of such lost opportunities include:
--Ocular gene therapy holds great promise for retinal degenerative
diseases, in which nearly 200 gene defects have been
implicated. Investigators supported by NEI and private-funding
organization Foundation Fighting Blindness (FFB) have begun
human clinical trials of a gene therapy to treat Leber
Congenital Amaurosis (LCA), a rapid retinal degeneration that
blinds infants in the first year of life. Previous research has
restored vision in dogs with LCA, and the results of the human
clinical trials are forthcoming. Although the NEI could expand
this program to target more diseases, current budget realities
limit further research.
--Promising protocols proposed within the Diabetic Retinopathy
Clinical Research Network will not be funded. The DRCR Network
is a large, multi-center study that engages ophthalmologists
and optometrists, many in community health centers, in basic
and clinical research. Past NEI diabetes networks developed
laser treatments for DR that save $1.6 billion annually in
Federal disability payments.
--NEI funding for epidemiological studies is already limited, which
jeopardizes future research into the basis/progression of eye
disease in additional ethic populations, such as Asian and
Native Americans. Past NEI studies identified a three-fold
greater risk of glaucoma in African Americans and glaucoma as
the leading cause of irreversible vision loss in African
Americans and Hispanics.
--NEI will not be able to fund proposed new Clinical Research
Networks for AMD and for neuro-ophthalmic disorders. The latter
could assist in understanding visual disorders associated with
Traumatic Brain Injuries (TBI), especially those currently
being incurred in record numbers by soldiers in Iraq and
Afghanistan.
NEI research into other significant eye disease programs such as
cataract will be threatened, along with quality of life research
programs into low vision and chronic dry eye. This occurs at a time
when the U.S. Census cites significant demographic trends that will
increase the public health problem of vision impairment and eye
disease, such as the first wave of 78 million Baby Boomers celebrating
their 65th birthday in 2010, with about 10,000 Americans turning 65
each day for 18 years afterward.

EYE DISEASE IS A MAJOR PUBLIC HEALTH PROBLEM INCREASING HEALTH COSTS,
REDUCING PRODUCTIVITY, AND DIMINISHING QUALITY OF LIFE

The 2000 U.S. Census reported that more than 119 million people in
the United States were age 40 or older--the population most at risk for
an age-related eye disease. The NEI estimates that more than 38 million
Americans age 40 and older currently experience blindness, low vision
or an age-related eye disease such as AMD, glaucoma, diabetic
retinopathy, or cataracts. This is expected to grow to more than 50
million Americans by year 2020. Although the current annual cost of
vision impairment and eye disease to the United States is $68 billion,
it does not fully quantify the impact of direct healthcare costs, lost
productivity, reduced independence, diminished quality of life,
increased depression, and accelerated mortality. This presents a major
public health problem and financial challenge to the public and private
sectors.
In public opinion polls over the past 40 years, Americans have
consistently identified fear of vision loss as second only to fear of
cancer. As recently as March 2008, the NEI's Survey of Public
Knowledge, Attitudes, and Practices Related to Eye Health and Disease
reported that 71 percent of respondents indicated that a loss of their
eyesight would rate as a ``10'' on a scale of 1 to 10, meaning that it
would have the greatest impact on their day-to-day life. As a result,
Federal funding for the NEI is a vital and cost-effective investment in
the health, and vision health, of our Nation as the treatments and
therapies emerging from research can preserve and restore vision.
ARVO urges fiscal year 2009 NIH and NEI funding at $31 billion and
$711 million, respectively.
1_____

Prepared Statement of the Association for Supervision and Curriculum
Development (ASCD)

Chairman Harkin, ranking member Specter, and honorable members of
the subcommittee: Thank you for the opportunity to share ASCD's
priorities for Federal funding. My name is Dr. Gene Carter, and I am
Executive Director and CEO of the Association for Supervision and
Curriculum Development (ASCD).
ASCD is a nonprofit, nonpartisan organization representing 175,000
educators. ASCD members are found in schools throughout this country.
They are superintendents, deputy superintendents, principals, teachers,
professors of education, and school board members. With the exception
of teacher unions, we represent more principals, superintendents, and
educational leaders than any singular principal association or school
administrator association. Formed in 1943, ASCD advocates for
educational excellence and equity. As ASCD has grown in membership, our
mission has evolved and expanded to address all aspects of effective
teaching and learning--including professional development, educational
leadership, capacity building, and effective pedagogy. ASCD membership
is driven by best practices in the classroom to provide our children
with the skills necessary to compete in the 21st century. We want the
best policies to develop and educate the whole child.
ASCD believes that through effective program changes and increased
flexibility education can thrive in this country. We also believe that
accountability is as critical to education as textbooks. Although the
proper accountability framework is a subject of debate, ASCD firmly
believes in high standards and effective indicators that demonstrate
progress towards those standards. Furthermore, ASCD is unique in that
we have not previously submitted testimony to this committee asking for
more resources. We have cautioned our membership against simply
requesting more money when speaking with their Members of Congress. We
do not believe money alone will solve the problems facing education.
However, we do believe that a lack of money exacerbates the
difficulties schools face when preparing our children to succeed in
this global economy. We offer the following recommendations for your
consideration:

FUNDING GAPS: AUTHORIZATION VERSUS APPROPRIATIONS

Many in Congress believe legislative authorizations are a guardrail
to restrain spending for Federal programs. Given the tremendous gap
between authorized amounts and the appropriated amounts, especially in
Title I and IDEA, the need for such a ``guardrail'' is not readily
apparent. ASCD appreciates that several members of this subcommittee
and the full committee decried the inadequate funding and put forth
tremendous efforts to provide significant education increases for both
NCLB and IDEA. Unfortunately, the gap persists, and educators across
this country--those charged with implementing and complying with the
requirements of NCLB and IDEA--are finding their work seriously
impacted by the lack of Federal funds.
Looking at three significant and important programs--Title I, Title
II, and IDEA--there is a Federal funding difference of $19.6 billion
between the authorized and appropriated amounts. This gap is
exacerbated when combined with an inflation rate of 4.3 percent. In
addition, student enrollment is expected to grow by almost 5 percent
through 2014, the time frame included in the NCLB legislation. This gap
requires schools to find crucial resources through State or local tax
increases. Adding further pressure to this situation is the dismal
fiscal outlook among the States for the next 2 years. Eighteen States
are projecting budgetary shortfalls totaling $14 billion for fiscal
year 2008, and 17 States are projecting shortfalls of $31 billion for
fiscal year 2009--leading to either greater pressure on local taxpayers
or drastic reductions in services to children.
We believe that the Federal Government has an obligation to support
our schools and to pay for a larger share of the requirements
associated with compliance of Federal programs. Although we do not
expect to see an increase of $19.6 billion, this funding gap
illustrates a fundamental obstacle in the education of children. We
urge the members of this committee to consider this situation when
developing the funding legislation. We are hopeful this subcommittee
will continue the promising support expressed by the Senate Budget
Resolution, which contained an $8.8 billion increase over the
President's fiscal year 2009 discretionary funding request for
education, training, and social services programs.

LOOKING AHEAD TO FISCAL YEAR 2009

ASCD urges you to provide the funding levels necessary to educate
the whole child. Listed below are several programs we believe will make
a substantial difference in helping schools, communities, educators,
and policymakers to provide the necessary support and resources to
ensure all children are healthy, safe, engaged, supported, and
challenged.

TITLE I

Title I enables schools to better serve the neediest student
populations. This program provides critical funds and learning
resources to help compensate for the difficulties faced by
disadvantaged children. Additional programs and learning materials help
students, and schools continue to narrow the achievement gap. However,
given increasing costs and growing student populations, funding for
Title I has been inadequate. We know that schools are capable of doing
much more, but we recognize that they are presently bound by their lack
of resources. A significant increase in Title I funding will provide
schools the flexibility to use the resources for assisting targeted
student populations.

TITLE II

The correlation between teacher and school leader quality and
student success is well documented. ASCD believes funding for Title II
Teacher Quality Grants should be significantly higher than in previous
years. It is time we begin to provide incentives, including salaries
and professional development opportunities that better reflect the
importance of teachers and educational leaders. We applaud past efforts
by this committee to provide increased funds for Title II. However, to
ensure that our teachers are well prepared to meet growing demands, we
must provide the programs and opportunities that enable more
professional development opportunities. We also believe effective
programs like the Teacher Incentive Fund and other grant programs--
enabling schools to offer financial and professional incentives for
high-quality educators to serve in high-need areas--is a critically
important role that should receive increased funding.

HIGH SCHOOL REDESIGN

Our high schools are in crisis. We lose over 1 million students
every year. One student drops out every 30 seconds. Beginning in the
middle grades, the signs are clear as to which students are prone to
dropping out. Students with low attendance, increasing academic
difficulty or a failing grade, and decreasing or minimal engagement
with educators all signify a danger of dropping out. Academic
difficulty is not the only reason kids drop out; many students leave
because they are not challenged or engaged by educators.
Yet, the answers exist. Pockets of successful schools graduate
students and prepare them for high achievement in the real world or at
advanced educational institutions. These solutions are not cheap.
Effective high schools include personalized learning and mentoring to
engage students. They have rich and relevant curricula that challenge
students. The educators in these schools receive extensive professional
development that is innovative and flexible. These high schools are
also free to develop alternative scheduling options for fulfilling the
Carnegie unit, including the length of the school day and school year.
Yet additional resources are needed for many schools to develop and
effectively implement these approaches.
Although there may be some hesitancy to invest significant
resources now, given the difficult financial situation we face,
consider numerous studies that demonstrate the hundreds of billions in
dollars lost in productivity, taxes, and wages of high school dropouts.
From a societal standpoint, dropouts are also associated with
drastically higher medical and health care costs. High school dropouts
also have higher incarceration rates. I am happy to share the extensive
research on this topic. This committee faces a fundamental question: Do
we spend this money now and invest in the future? Or does the country
pay for our lack of funding in the future? Fortunately, a dedicated
fund for secondary school improvement sponsored by Senators Pryor and
Kennedy was unanimously approved as part of the Senate's 2009 Budget
Resolution, signaling broad support for this investment. We are hopeful
that this amendment remains as part of the final 2009 Budget
Resolution. As such, it is our hope that this subcommittee will take
the next step by including funding for high school redesign in the
legislation.

COMMUNITY SCHOOLS

One of the most cost-effective and innovative approaches to
addressing not only educational needs but also the needs of local
communities is full-service community schools. Full-service community
schools facilitate collaboration among public schools, community-based
organizations, and public and private partnerships, resulting in
comprehensive educational, social, and health services provided to
children and families. This approach does not saddle schools with the
financial or service requirements of other agencies; instead these
agencies use the school as the site or location to provide the relevant
services. Full-service community schools create the school as the hub
of the community and the centralized location to provide a multitude of
services by relevant professionals. These schools not only address the
health and social needs of many students, but also they provide
extensive resources for other community members that achieve broader
societal goals, including job training, career counseling, medical
assistance, and linkage with social service programs. We request the
subcommittee do its part in providing more resources to support these
schools and the related services provided.

CHILDREN'S HEATH AND LEARNING

Among the many important choices facing the subcommittee, we
encourage you to support those programs like Head Start that provide
early childhood access to health services and pre-kindergarten
education. Like high schools, the studies are numerous and overwhelming
that children's health is an important factor in high academic
achievement. The same is true of effective pre-kindergarten programs.
If we truly want to close the achievement gap and prepare our children
for success in the 21st century, we must provide these critical
services.

CONCLUSION

We recognize that the nation's economy is currently under
tremendous strain, and we fully comprehend the need to be fiscally
responsible in a time of growing budget deficits and economic
downturns. However, ASCD believes important domestic priorities like
education are not an expense, but an investment. Our children's
education, health, and our teachers' professional development are three
of the most proven methods of maintaining our strength and
competitiveness in a global economy. It is apparent now more than ever
that our funding choices today will lay the foundation for our
country's success tomorrow. To ensure that we educate our children and
prepare them to be tomorrow's leaders; we need to make the investment
in our children and students today.
Thank you again for the opportunity to share ASCD's positions. We
look forward to working with you in the coming days to craft sound
public policy for the good of our children and our future. Please
contact me at 1-703-575-5494 with any questions or concerns. Thank you
for your consideration.
______

Prepared Statement of the Association of University Programs in
Occupational Health and Safety

Thank you for the opportunity to submit testimony to the
subcommittee in support of funding for the National Institute for
Occupational Safety and Health (NIOSH) and for the NIOSH-funded
Education and Research Centers (ERCs). My name is Dr. Kent Oestenstad.
I am the director of the Deep South Center for Occupational Health and
Safety located at the University of Alabama at Birmingham.
I am testifying on behalf of the Association of University Programs
in Occupational Health and Safety (AUPOHS), an organization that
represents 17 multi-disciplinary, university-based Education and
Research Centers (ERCs) which are funded by NIOSH, the Federal agency
responsible for providing education and training for the prevention of
work-related injuries and illnesses. The ERCs are regional resources
for all parties involved with occupational health and safety--industry,
labor, government, academia, and the general public. ERCs play the
following roles in helping the Nation reduce losses associated with
work-related illnesses and injuries:
--Prevention Research: Developing the basic knowledge and associated
technologies to prevent work-related illnesses and injuries.
--Professional Training: Graduate degree programs in Occupational
Medicine, Occupational Health Nursing, Safety Engineering,
Industrial Hygiene, and other related fields to provide
qualified professionals in essential disciplines.
--Research Training: Preparing doctoral-trained scientists who will
respond to future research challenges and who will prepare the
next generation of occupational health and safety
professionals.
--Continuing Education: Short courses designed to enhance
professional skills and maintain professional certification for
those who are currently practicing in occupational health and
safety disciplines. These courses are delivered throughout the
regions of the 17 ERCs as well as through distance learning
technologies.
--Regional Outreach: Responding to specific requests from local
employers and workers on issues related to occupational health
and safety.
the scope of the problem of occupational injury and illnesses
The many causes of occupational injury and illness represent a
striking burden on America's health and well-being. Yet, despite
significant improvements in workplace safety and health over the last
several decades:
--Each day, an average of 9,000 U.S. workers sustain disabling
injuries on the job, 16 workers die from an injury suffered at
work, and 137 workers die from work-related diseases.
--In 2005, more than 4.2 million workers sustained work-related
injuries and illnesses in the private sector alone.
--The Liberty Mutual 2005 Workplace Safety Index estimates that
employers spent $50.8 billion in 2003 on wage payments and
medical care for workers hurt on the job; the indirect costs
exceeded $200 billion.
This is an especially tragic situation because most work-related
fatalities, injuries and illnesses are preventable with effective,
professionally directed, health and safety programs.
Here are some of the important issues that NIOSH deals with:
--When the Senate office buildings were attacked with anthrax, NIOSH
and ERC professionals responded.
--NIOSH, helped by ERCs, took a lead role in protecting the safety of
9/11 emergency responders in New York City and Virginia.
--We are now seeing serious health problems in the workers who were
at Ground Zero. NIOSH and the New York-New Jersey ERC are
playing the major lead in their medical follow-up.
--NIOSH is the leading Federal agency conducting research and
providing guidance on the worker health implications in the
emerging field of nanotechnology.
We need manpower to address the sorts of issues mentioned above and
it is the NIOSH ERCs that produce the graduates who fill key positions
in health and safety programs, regionally and around the Nation. And
because ERCs provide training that is multi-disciplinary, ERC graduates
protect workers in virtually every walk of life. Despite the recognized
success of the ERCs in training such qualified professionals, the
country continues to have ongoing shortages.
Furthermore, we do not live in a static environment. The rapidly
changing workplace continues to present new health risks to American
workers that need to be addressed through occupational safety and
health research. For example, between 2000 and 2015, the number of
workers 55 years and older will increase 72 percent to over 31 million.
Work related injury and fatality rates begin increasing at age 45, with
rates for workers 65 years and older nearly three times as high as the
average for all workers.
In addition to factors that increasingly affect the vulnerability
of our workers, we constantly face new threats to worker health. As an
example, one of the greatest concerns regarding a potential outbreak of
avian influenza is the drastic effect it may have on our workforce. The
protection of health care workers in particular will become a major
priority if we are to protect our population.
Despite being the primary Federal agency for occupational disease
and injury prevention in the Nation, NIOSH receives only about $1 per
worker per year for its mission of research, professional education,
and outreach.

HOMELAND SECURITY

The heightened awareness of terrorist threats, and the increased
responsibilities of first responders and other homeland security
professionals, illustrates the need for strengthened workplace health
and safety in the ongoing war on terror. The NIOSH ERCs play a crucial
role in preparing occupational safety and health professionals to
identify and ameliorate vulnerabilities to terrorist attacks and other
workplace hazards and increase readiness to respond to biological,
chemical, or radiological attacks.
Thanks to the subcommittee's support for occupational health and
safety research, NIOSH developed more effective methods to test for
anthrax contamination in congressional offices. These procedures were
quickly adopted by the Coast Guard, the FBI, and government building
contractors. More recently, in response to ongoing safety concerns
regarding the tunnels under the U.S. Capitol Complex, NIOSH was asked
to evaluate health hazards in the tunnels for workers who maintain the
plumbing that provides steam and chilled water to Congress, the Library
of Congress, the Supreme Court and other Federal buildings.
In addition, occupational health and safety professionals have
worked for several years with emergency response teams to minimize
losses in the event of a disaster. NIOSH took a lead role in protecting
the safety of 9/11 emergency responders in New York City and Virginia,
with ERC-trained professionals applying their technical expertise to
meet immediate protective needs and conducting ongoing activities to
safeguard the health of clean-up workers. Additionally, NIOSH is now
administering $81 million in grants to provide health screening of
World Trade Center responders. Included in the grantees is the New
York-New Jersey ERC.
In the face of the growing concerns surrounding homeland security,
ERCs have rapidly upgraded research coordination and expanded training
opportunities, including sponsoring national and regional forums on
response to bioterrorism and other disasters.

THE NEED FOR OCCUPATIONAL SAFETY AND HEALTH MANPOWER

The NIOSH ERCs were reviewed by the DHHS Office of the Inspector
General in 1995. The resulting report affirmed the efficacy of the ERCs
in producing graduates who pursue careers in occupational safety and
health. Since the ERCs are regional, they are ready to respond to
various trends in industries throughout the country. In the southeast,
for example, automobile manufacturing has been the major growth
industry since 2000. Alabama now has major facilities for Mercedes,
Honda and Hyundai that employ thousands of workers. Graduates from the
Deep South Education and Research Center (University of Alabama at
Birmingham and Auburn University) fill key positions in the safety,
health and environmental programs at all of these facilities. And
because they provide training that is multi-disciplinary, ERCs graduate
professionals can protect workers in virtually every walk of life.
Despite the recognized success of the ERCs in training qualified
occupational health and safety professionals, the country continues to
have ongoing shortages. The manpower needs are especially acute for
doctoral-level trained professionals who can conduct research and help
in implementing the National Occupational Research Agenda (NORA).
In May 2000, the Institute of Medicine issued its final report on
the education and training needs for occupational safety and health
professionals in the United States. This report concluded that ``the
continuing burden of largely preventable occupational diseases and
injuries and the lack of adequate occupational safety and health
services in most small and many larger workplaces indicate a clear need
for more occupational safety and health professionals at all levels.''
Specific needs identified by the IOM report include:
--An insufficient number of doctoral-level graduates in occupational
safety, thus limiting the Nation's capacity to perform
essential research and training in traumatic injury prevention.
--An inability to attract physicians and nurses into formal
occupational safety and health academic training programs, thus
limiting the resources needed to deliver occupational health
services.
ERCs are accomplishing the critical mission of filling these gaps
by preparing expert researchers and practitioners in occupational
safety and health.

RECOMMENDATION FOR FISCAL YEAR 2009

In fiscal year 2009 AUPOHS requests a $50 million increase for
NIOSH over the fiscal year 2008 appropriated level, and within that
increase, not less than a $5 million increase for Education and
Research Centers (ERCs).
A $50 million increase would enable NIOSH to keep pace with the
changing nature of work and ensure that research and education to
prevent work-related disease and injuries remain a high priority. Given
that much of NIOSH's extramural research program is carried out by the
Education and Research Centers (ERCs), sustaining the academic
infrastructure provided by the ERCs is essential. Our recommendation
would ensure that our Nation's universities have the capacity and
manpower to implement these initiatives and expand training programs to
improve the health and productivity of American workers.
The ERCs play an essential role in preventive health research and
the training of occupational safety and health professionals, many of
which are in short supply. The 17 ERCs are distributed throughout the
United States and have a critical community outreach function, as well
as serve as local resources of occupational safety and health
expertise. A $5 million increase will bring the total budget for the 17
ERCs to $26.4 million and promote achievement of the NIOSH strategic
goal to increase the technical proficiency of the occupational safety
and health professionals who lead occupational safety and health
practice in both the private and public sectors.
Thank you for the opportunity to report the great need for research
and training in occupational safety and health.
______

Prepared Statement of the Association of Women's Health, Obstetric and
Neonatal Nurses

The Association of Women's Health, Obstetric and Neonatal Nurses
(AWHONN) appreciates this opportunity to provide testimony on the
fiscal year 2009 appropriations for the Department of Health and Human
Services (HHS).
AWHONN is a specialty nursing organizations with nearly 23,000
nurses dedicated to the mission of advancing the health and well-being
of women and newborns. AWHONN members are registered nurses, nurse
practitioners, and certified nurse-midwives, who are clinicians,
executives, managers and educators serving in hospitals and health
systems, independent practices, universities, and community clinics
throughout the United States.
Nurses are typically the first and most consistent point of contact
in the health care setting. Evidence suggests that they spend more time
with patients--up to four times on average--than any other health care
provider. As such, nurses have a unique perspective on the health care
system and the public health programs and agencies funded under HHS.
We appreciate the leadership of the Subcommittee in providing
generous funding in past years to the important public health and
biomedical research programs within its jurisdiction. We recognize the
challenges the Subcommittee will face in fiscal year 2009 in
reconciling various expenditures in the face of overall budget
deficits, but have faith that you will not sacrifice the Nation's
health needs in making these determinations.
AWHONN members know first hand the significant health returns our
Nation has achieved based on the investments made in the various
programs discussed below. We urge your continuing support of them at
levels that serve the Nation adequately. We emphasize the term
``adequately,'' as we and the large coalition of organizations that
stand behind these recommendations believe the proposed funding levels
are truly necessary just to maintain current progress in fiscal year
2009 and do not represent ``stretch'' spending at this time of
necessary trade-offs.

HEALTH RESOURCES AND SERVICES ADMINISTRATION (HRSA)

AWHONN recommends $7.9 billion for HRSA in fiscal year 2009
HRSA is responsible for a variety of programs ranging from support
for health professions education to the care of underserved populations
to the special needs of mothers and children. The funding for these
programs has not kept pace with need and we cannot afford to lose
further ground if the Nation's safety net. Our health system's
infrastructure is to be preserved in ways that ensure quality care in
the United States.

Title VIII--Nursing Workforce Development Programs
AWHONN recommends $200 million for Title VIII programs in fiscal
year 2009.--Title VIII programs help to address the Nation's continuing
nursing and nurse faculty shortage via scholarships, grants and loan
repayments to nursing students, recent nursing graduates and nursing
school faculty. Title VIII also provides grants to schools of nursing
and health centers to foster greater diversity and improved retention
rates in the nursing workforce.

The Nursing Shortage
Nursing is the Nation's largest health care profession with nearly
2.5 million jobs. However, the United States is experiencing a shortage
of nurses, which is expected to intensify as the baby-boomer population
ages and the need for healthcare services and providers grows. Today,
less than 9 percent of all nurses are under the age of 30. With the
average age of nurses standing at 46.8 years old, a wave of retirements
is expected in the near future.
According to projections from the U.S. Bureau of Labor Statistics,
more than 1.2 million new and replacement nurses will be needed by
2014. Unless we act now, this shortage may jeopardize access to quality
patient care.

The Nurse Faculty Shortage
In addition to a shortage of nurses at the bedside, the United
State is also facing a shortage of nursing school faculty members. From
2002 to 2006 almost 129,000 qualified candidates were turned away from
entry-level baccalaureate nursing programs. Almost 75 percent of
nursing schools cited faculty shortages as a primary reason for not
accepting all qualified applicants into nursing programs.
The average age of nurse faculty is 55 years old. Much like nurses
at the bedside, a wave of retirements is expected in the coming years.
However, according to an April 2006 report, HRSA projects that nursing
schools must increase the number of graduates by 90 percent in order to
adequately address the nursing shortage.
Without an adequate number of faculty members to prepare the next
generation of nurses, the shortage is expected to intensify even
further.

Title VIII Programs are Effective in Addressing the Shortages
Ongoing attrition among practicing nurses and faculty nurses due to
retirement and the growing demand for health services have left the
Nation with a severe shortage of nurses.
Significant near- and long-term gains can be made in addressing the
nursing shortage if Title VIII Nursing Workforce Development Programs
are adequately funded. AWHONN joins the larger nursing community and 52
Senators in requesting a funding level of $200 million for fiscal year
2009. This figure was determined based on an a serious calculation of
what will be required to sustain current progress toward reversing the
nursing shortages and averting a reversal of the positive momentum that
has been achieved toward achieving needed workforce levels.
7Title V--Maternal and Child Health Block Grant (MCHB)
AWHONN recommends $850 million for Title V in fiscal year 2009.--
MCHB programs provide prenatal health services to two million women,
and primary and preventive health care to more than 17 million
children, including almost one million children with special health
needs. Title V special projects target underserved urban and rural
areas with efforts at the community level to promote collaboration
between public and private sector leaders, and health care providers.
Title V programs also underwrite public education campaigns addressing
critical issues such as immunizations, prenatal care and healthy
weight. In addition to targeting primary care to the underserved, Title
V programs are essential to helping people to help themselves and avert
costly health care services.

National Health Service Corps (NHSC)
AWHONN recommends 200 million for NHSC in fiscal year 2009.--The
National Health Service Corps (NHSC) provides health care services to
communities in serious need of qualified health professionals. The
program enables clinicians, including nurses, to acquire scholarships
or loan repayments for practicing in a designated Health Professional
Shortage Area (HPSA) for a minimum of 2 years. Since 1972, more than
28,000 physicians, nurses, dentists, and mental health professionals
have provided critical primary care services to the underserved through
NHSC.
Currently, NHSC supports the important work of approximately 4,000
providers nationally, with a significant backlog of eligible candidates
to meet needs estimated to require nearly 30,000 health care
professionals nationwide. NHSC providers are a critically important
element in our Nation's health safety net and a means of supporting the
education and practice of providers who are in categories of health
professionals in undersupply across the country. The administration's
proposed fiscal year 2009 cuts to this program would prove devastating
to the Corps' ability to recruit and provide awards. We urge your
leadership in averting this catastrophe at the reasonable funding level
of 200 million that would be applied to both NHSC lines: the
recruitment line, which provides the scholarship and loan repayments,
and the field line which includes Ready Responders, SEARCH, and the
Ambassador Programs.

NATIONAL INSTITUTES OF HEALTH (NIH)

AWHONN recommends a $1.9 billion increase for NIH funding, totaling
$31.1 billion for fiscal year 2009.
NIH is the world's leading medical research enterprise. Thanks to a
doubling of the NIH budget in the 1990s, the U.S. has amassed a wealth
of knowledge that continues to provide the science behind new
discoveries and possible treatments for life's most devastating
diseases. Research done at the NIH is leading to better patient care.
Further, its outcomes are returning financially to the government via
novel licensing agreements and patents; and to the overall U.S. economy
through job creation in university labs , as well as private
pharmaceutical and device companies.
The proposed increase in NIH funding for fiscal year 2009 accounts
for general inflation, as well as biomedical inflation, so that NIH can
maintain its current purchasing power and continue to pursue
groundbreaking research and life saving discoveries. While AWHONN
supports the NIH in its entirety, several institutes are especially
important to the advancement of nursing and the health and well-being
of women and newborns.

National Institute of Nursing Research (NINR)
AWHONN recommends $150 million for NINR in fiscal year 2009.--NINR
supports nurse-led research that contributes to advancing high quality,
evidence based care across the lifespan. Research at NINR has targeted,
among other topics, health disparities, risk reduction, chronic
illnesses and care for rural and underserved populations. NINR promotes
a uniquely important nursing perspective, as there is no caregiver that
interacts with patients more or is more trusted by patients than
nursing professionals. There is no other body that funds important
nursing research similarly in this country, and NINR research has
contributed measurably to more efficient and effective health care as
our Nation struggles to fill continuing staffing shortages and gaps in
health care services.

National Institute of Child Health and Human Development (NICHD)
AWHONN recommends $1.34 billion for NICHD in fiscal year 2009.--
NICHD is tasked with understanding human development, from pre-
conception to adulthood. The Institute has many opportunities to
research and correct some of the Nation's leading health problems among
our most vulnerable populations. Its legacy of contributions to the
scientific literature and to diagnostics and treatments now in use is a
testament to the value of past Congressional investment. There is no
other Institute that devotes itself more to ensuring the quality of
life and health care for women of childbearing age, and the potential
for successful beginnings of life for their offspring.

National Institute of Mental Health (NIMH)
AWHONN recommends $1.5 billion in for NIMH in fiscal year 2009.--
NIMH aims to reduce the burden of mental illness and behavioral
disorders through research on mind, brain and behavior. Tasked with
researching some of our Nation's most devastating mental and behavioral
disorders, such as autism, bipolar disorder, and, in the instance of
women of childbearing age, perinatal mood and anxiety disorders such as
postpartum depression, NIMH has the potential by some estimates to
improve the lives of one-third of all Americans who suffer some level
of mental impairment.

National Institute of Environmental Health Sciences (NIEHS)
AWHONN recommends $684 million for NIEHS in fiscal year 2009.
Research conducted by NIEHS plays a critical role in our understanding
of environmental exposures and the health of Americans. Through their
research, various types of cancer, birth defects, infertility and other
chronic illnesses have been shown to be attributable in many instances
to gene disruptions caused by exposure to environmental contaminants.
These findings have tremendous potential to lead to means of averting
or reversing the impacts of such disease triggers.
AWHONN thanks the committee for your consideration and greatly
appreciates this opportunity to submit testimony on these critical
funding areas.
______

Prepared Statement of the Brain Injury Association of America

Chairman Harkin and ranking member Specter: Thank you for the
opportunity to submit this written testimony with regard to the fiscal
year 2009 Labor-HHS-Education appropriations bill. My testimony is on
behalf of the Brain Injury Association of America (BIAA), our national
network of State affiliates, and hundreds of local chapters and support
groups from across the country.
A traumatic brain injury (TBI) is a blow or a jolt to the head that
temporarily or permanently disrupts brain function--i.e. who we are and
how we think, act, and feel. In the civilian population alone every
year, more than 1.5 million people sustain brain injuries from falls,
car crashes, assaults and contact sports. Males are more likely than
females to sustain brain injuries. Children, teens and seniors are at
greatest risk.
Now we are seeing an increasing number of servicemembers returning
from the conflicts in Iraq and Afghanistan with TBI, which has been
termed one of the signature injuries of the War. The Army's Traumatic
Brain Injury Task Force, released this past January, reported estimates
that up to 20 percent of Marines and soldiers returning from
Afghanistan and Iraq might have experienced brain injuries. This means
that possibly upwards of 150,000 American troops have been, or will be,
impacted by TBI as a result of ongoing combat operations. Many of these
returning servicemembers are undiagnosed or misdiagnosed and
subsequently they and their families will look to community and local
resources for information to better understand TBI and to obtain vital
support services to facilitate successful reintegration into the
community.
For the past 11 years Congress has provided minimal funding through
the HRSA Federal TBI Program to assist States in developing services
and systems to help individuals with a range of service and family
support needs following their loved one's brain injury. Similarly, the
grants to State Protection and Advocacy Systems to assist individuals
with traumatic brain injuries in accessing services through education,
legal and advocacy remedies are woefully underfunded. Rehabilitation,
community support and long-term care systems are still developing in
many States, while stretched to capacity in others. Additional numbers
of individuals with TBI as the result of war-related injuries only adds
more stress to these inadequately funded systems.
BIAA was gravely disappointed that last year, even as Congress had
the good judgment to add hundreds of millions dollars to the budgets of
the Department of Defense and the Department of Veterans Affairs to
help address the problem of TBI among returning servicemembers, funding
for the HRSA Federal TBI Program was reduced from $8.91 million to
$8.754 million.
If I may, I would like to provide you with an example of the
disconnect which results as a consequence of these appropriations
decisions. Last year's reduction in funding for the HRSA Federal TBI
Program means that one of our State affiliates--the Brain Injury
Association of New York (BIANYS)--whose work has been supported through
the HRSA Federal TBI Program, now may face reduced funding to support
its current efforts to develop relationships with the New York State
Division of Veterans Affairs in order to assist returning
servicemembers with TBI and their families through the provision of
training, education, collaboration, and outreach services.
BIAA respectfully urges you to provide States with the resources
they need to address both the civilian and military populations who
look to them for much needed support in order to live and work in their
communities.
With broader regard to all of the programs authorized through the
TBI Act, BIAA specifically requests:
--$9 million for the Centers for Disease Control and Prevention TBI
Registries and Surveillance, Prevention and National Public
Education/Awareness;
--$15 million for the Health Resources and Services Administration
(HRSA) Federal TBI State Grant Program; and
--$6 million for the HRSA Federal TBI Protection & Advocacy (P&A)
Systems Grant Program.
In addition, BIAA urges you to provide sufficient funding in fiscal
year 2009 to enable the National Institute on Disability and
Rehabilitation Research (NIDRR) within the Department of Education to
sustain and increase its medical rehabilitation research portfolio and
to continue its annual allocation of at least $8.3 million to fund 16
TBI Model Systems research centers. The fiscal year 2008 Defense
Authorization bill, which was recently signed into law, includes
specific language directing new TBI research efforts within the
Department of Veterans Affairs to collaborate with NIDRR TBI research
programs, such as the TBI Model Systems of Care. The TBI Model Systems
of Care program has established a vital national network of expertise
and research in the field of TBI, and weakening this program would have
deleterious effects on both military and civilian populations.
Last year, Congress provided $900,000 in additional stopgap funding
for the TBI Model Systems of Care program in order to maintain 16
valuable TBI research centers around the country, and to prevent the
nation's valuable TBI research capacity from being diminished. It is
essential that Congress maintain this investment.
Furthermore, BIAA urges increased support for medical
rehabilitation research at NIDRR, which is the country's lead Federal
agency on rehabilitation and disability research. In addition to the
challenges of flat funding for NIDRR for at least the past five fiscal
years, the agency has recently signaled an intent to narrow its focus
to emphasize research of interest to its parent agency, the Office of
Special Education and Rehabilitative Services (i.e., employment and
vocational rehabilitation research) at the expense of research related
to health and function, particularly medical rehabilitation research.
NIDRR appears to be making a conscious effort to move away from a long-
term, key aspect of the NIDRR research portfolio; improving the health
and functioning of people with disabilities. Given the multi-
dimensional character of the disability experience, NIDRR's scope needs
to transcend the specific Federal department and agency in which it is
currently located.
In the recent past, NIDRR has eliminated funding for:
--A rehabilitation research and training center (RTC) on
neuromuscular disease, the only Federal source for
rehabilitation research funding for persons with conditions
such as ALS, muscular dystrophy, and peripheral nerve diseases;
--An RTC on arthritis and related musculoskeletal conditions;
--An RTC on health and wellness of people with spinal cord injuries;
and
--An RTC on community integration of individuals with traumatic brain
injury, one of the key aspects of functioning with a TBI over
the long term.
Each of these grants were funded at $800,000 per year for a five-
year period. Each of these centers developed valuable insight and
disseminated meaningful information that improved the lives of these
disability groups during the course of these grants.
To make matters worse, NIDRR recently announced that grant
announcements for four additional RTCs would be delayed and
reformulated to focus attention on employment and vocational
rehabilitation. These announcements may or may not be released over the
remainder of this fiscal year. The four RTCs that have been delayed
address the areas of Multiple Sclerosis, stroke, aging with a
disability, and the psychiatric aspects of disability.
In order to preserve the valuable health and functioning research
capacity developed by NIDRR over three decades, BIAA recommends that
Congress increase the President's fiscal year 2009 request by $3.2
million in new Federal dollars in order to reinstate the four RTCs that
were eliminated over the course of the past six months, and explicitly
direct that these funds be used for the purposes of continuing these
RTCs through a competitive grant process.
As for the four delayed RTCs addressing Multiple Sclerosis, stroke,
aging with a disability, and the psychiatric aspects of disability,
BIAA requests that Congress impress upon NIDRR in fiscal year 2008 the
importance of preserving the traditional focus of these research
centers and direct NIDRR to expeditiously reissue competitive grant
announcements for these critical research centers.
Thank you for this opportunity to testify. BIAA appreciates your
leadership and looks forward to working with you in the months and
years ahead to not only maintain, but enhance funding for Federal TBI
programs.
______

Prepared Statement of the Coalition for Health Services Research

The Coalition for Health Services Research (Coalition) is pleased
to offer this testimony regarding the role of health services research
in improving our Nation's health. The Coalition's mission is to support
research that leads to accessible, affordable, high-quality health
care. As the advocacy arm of AcademyHealth, the Coalition represents
the interests of 3,500 researchers, scientists, and policy experts, as
well as 130 organizations that produce and use health services
research.
Health care in the United States has the potential to improve
people's health dramatically, but often falls short and costs too much.
Health services research is used to understand how to better finance
the costs of care, measure and improve the quality of care, and improve
coverage and access to affordable services. It provides patients,
providers, payers, and policymakers with the necessary tools to make
health care:
--Affordable, by decreasing cost growth to sustainable levels.
--Efficient, by decreasing waste and overpayment and monitoring cost
effectiveness of care.
--Safe, by decreasing preventable medical errors, monitoring public
health, and improving preparedness.
--Effective, by evaluating programs and outcomes and promoting
evidence-based innovations.
--Equitable, by eliminating disparities in health and health care.
--Accessible, by connecting people with the health care they need
when they need it.
--Patient-centered, by increasing patient engagement in, and
satisfaction with, the care they receive.
Indeed, health services research is changing the face of American
health care, uncovering critical challenges facing our Nation's health
care system. For example, the 2000 Institute of Medicine (IOM) report
To Err is Human found that up to 98,000 Americans die each year from
medical errors in the hospital. Health services research also uncovered
that disparities and lack of access to care in rural and inner cities
result in poorer health outcomes. And, it found that obesity accounts
for more than $92 billion in medical expenditures each year and has
worse effects on chronic conditions than smoking or problem drinking.
But health services research does not just lift the veil on
problems plaguing American health care; it also seeks ways to address
them. Health services research framed the debate over health care
reform in Massachusetts--forming the basis for that state's 2006 health
reform legislation--and continues to frame the debate on the national
stage today. It offers guidance on implementing and making the best use
of health information technology, and getting the best care at the best
value across a menu of treatment options.
In fact, there are increasing examples that demonstrate how
comparative effectiveness research--an emerging science in the broader
field of health services research--provides the scientific basis needed
to determine what treatments work best, for whom, and in what
circumstances.
--The Agency for Healthcare Research and Quality (AHRQ) found that
drugs can be as effective as surgery in management of
gastroesophageal reflux disease (GERD)--where stomach acid
enters the esophagus, causing heartburn and potential
esophageal damage. GERD is one of the most common health
conditions among older Americans and results in $10 billion
annually in direct health care costs. Knowing that, for the
majority of patients, drugs can be as effective as surgery in
relieving the symptoms could result in significant health care
savings and improved quality of life.
--The National Institute of Mental Health (NIMH) found that, within a
class of antipsychotic drugs, the older, less expensive drug
(Perphenazine) was just as effective and caused no worse side
effects than the three newer, more expensive drugs in treating
patients with schizophrenia. One of the newer drugs (Zyprexa)
was slightly more effective in controlling systems than the
other drugs, but at the cost of serious side effects.\1\ This
study enables greater flexibility in care and informs patients
and providers about costs and quality of care.
---------------------------------------------------------------------------
\1\ Lieberman, J.A., et. al. ``Effectiveness of Antipsychotic Drugs
in Patients with Chronic Schizophrenia,'' New England Journal of
Medicine, Vol. 353, No. 12, pp.1209-1223 (Sept. 22, 2005). Available on
the Web at http://content.nejm.org/cgi.content/abstract/353/12/1209.
---------------------------------------------------------------------------
As these examples suggest, health services research can contribute
greatly to better health care at better value. It is a true public
good, providing a basis for improvements in our health care system that
will benefit the general public. Americans overwhelmingly agree.
According to a 2005 Research!America survey, roughly 95 percent of
Americas agree that it is important to support research that focuses on
how well health care functions and how it can function better, and that
health care delivery should be based on the best and most recent
research available.\2\ After all, the investment in basic research and
the development of new medicines and equipment is wasted if the health
system cannot safely and effectively deliver that care.
---------------------------------------------------------------------------
\2\ Woolley, M. and S. Propst. ``Public Attitudes and Perceptions
about Health-Related Research.'' Journal of the American Medical
Association, Vol. 294, No. 11, p. 1382 (Sept. 21, 2005).
---------------------------------------------------------------------------
For the last 5 years, the Coalition has been collecting data to
track the Federal Government's expenditures for health services
research and health data. From information provided to us by these
funders--including AHRQ, National Institutes of Health (NIH), and the
Centers for Disease Control and Prevention (CDC)--funding for this
field has remained constant since 2003 and has not kept pace with
inflation.
In stark contrast, spending on health care overall has risen faster
than the rate of inflation--from $1.4 trillion in 2000 to nearly $2
trillion in 2005.\3\ The total Federal investment in health services
research and data by our estimates approaches $1.5 billion--
representing just 0.075 percent of the $2 trillion we spend on health
care annually.\4\ Health services research needs Federal support--now
more than ever--to help us spend our health care dollars more wisely.
---------------------------------------------------------------------------
\3\ Catlin, A., et. al. ``National Health Spending in 2005: The
Slowdown Continues,'' Health Affairs, Vol. 26, No. 1, pp. 142-153
(Jan./Feb. 2007).
\4\ Federal Funding for Health Services Research, Coalition for
Health Services Research (Feb. 2008). Available on the Web at
www.chsr.org.
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We recognize the support the subcommittee currently provides to
Federal agencies that fund health services research and now ask that
the subcommittee strengthen the capacity of the health services
research field to address the pressing challenges America faces in
providing access to high-quality, cost-effective care for all its
citizens.

AGENCY FOR HEALTHCARE RESEARCH AND QUALITY

AHRQ is the lead Federal agency charged with supporting unbiased,
scientific research to to improve health care quality, reduce costs,
advance patient safety, decrease medical errors, and broaden access to
essential services. Yet chronic under-funding threatens the agency's
ability to achieve this important mission--at a time when health care
costs are at an all time high, and Americans' basic health status lags
behind that of others around the world.
Before the targeted increase Congress provided last year to study
the comparative effectiveness of health care interventions and
Methicillin-resistant Staphylococcus aureus (MRSA), the agency's budget
rose just 6.7 percent since fiscal year 2002. Even with last year's
increase, the agency has lost $19 million in purchasing power since
fiscal year 2005 due to inflation and years of flat funding. And under
the President's budget, the agency stands to lose an additional $9
million.
This ``no growth'' budget has a significant impact on the field of
health services research and its ability to respond to the needs of
policymakers. For example, investigator-initiated research, such as
that undertaken by Lucian Leape in discovering the prevalence of
medical errors (which provided the basis for the IOM's To Err is
Human), is now practically non-existent. Specifically, there has been a
dramatic decline in the number of, and funding for, grants that support
researcher innovation and career development; and based on the
President's fiscal year 2009 budget, support for these awards will hit
new lows. AHRQ needs funding for new and competing grants to rejuvenate
the free marketplace of ideas, and for supporting the next generation
of researchers to ensure the field's capacity to respond to the growing
public and private sector demand for research.
We join the Friends of AHRQ--a coalition of more than 100 health
professional, research, consumer, and employer organizations that
support the agency--in recommending a fiscal year 2009 funding level of
at least $360 million, an increase of $26 million over the fiscal year
2008 level. This investment will allow AHRQ to restore its critical
health care safety, quality, and efficiency initiatives; strengthen the
infrastructure of the research field; and reignite innovation and
discovery.

CENTERS FOR DISEASE CONTROL AND PREVENTION

Housed within CDC, the National Center for Health Statistics (NCHS)
is the Nation's principal health statistics agency, providing critical
data on all aspects of our health care system. Thanks to NCHS, we know
that too many Americans are overweight and obese, cancer deaths have
decreased, average life expectancy has increased, and emergency rooms
are over-crowded. We know how many people are uninsured, how many
children are immunized, how many Americans are living with HIV/AIDS,
and how many teens give birth.
Before the small increase Congress provided last year, NCHS had
lost $13 million in purchasing power since fiscal year 2005 due to
years of flat funding and inflation. These shortfalls forced the
elimination of data collection and quality control efforts, threatened
the collection of vital statistics, stymied the adoption of electronic
systems, and limited the agency's ability to modernize surveys to
reflect changes in demography, geography, and health delivery.
Even amid deep cuts to CDC and health programs broadly, the
President recognized the value of NCHS and its data to the health
infrastructure, providing the agency nearly $125 million in his fiscal
year 2009 budget request. This level of funding is critical for
sustaining uninterrupted collection of vital statistics from states.
Without sustained support for these critical data systems, we are at
risk of becoming the first industrialized Nation unable to afford to
continuously collect birth, death, and other vital health information.
The Coalition joins the Friends of NCHS--a coalition of more than 100
health professional, research, consumer, industry, and employer
organizations that support the agency--in supporting the President's
funding request of $125 million to ensure uninterrupted collection of
vital statistics; restore other important data collection and analysis
initiatives; and modernize its systems to increase efficiency,
interoperability, and security.
While significant funding has been provided to improve the public
health system's capacity to respond to a terrorist attack or a public
health crisis such as pandemic flu, insufficient funding has been
provided to support research that evaluates the effectiveness of our
preparedness interventions and seeks to improve the delivery of public
health services. For example, how cost effective are public health and
prevention programs? How can the medical care and public health
delivery systems be better linked?
This important Public Health Research program has been flat funded
since fiscal year 2005 at a level of $31 million, and the President's
budget requests this same amount in fiscal year 2009. The Coalition
requests at least $35 million for this program in fiscal year 2009 to
restore purchasing power to fiscal year 2005 dollars.

CENTERS FOR MEDICARE AND MEDICAID SERVICES (CMS)

The President's budget request for the Office of Research,
Development and Information is $31 million--consistent the fiscal year
2008 level. This level--a decrease of $26 million since fiscal year
2006--hinders CMS' ability to meet its statutory requirements and
conduct new research into Medicare, Medicaid, and SCHIP, public
programs which together provide coverage to nearly 100 million
Americans and comprise 45 percent of America's total health
expenditures.\5\ At a time when these programs pose an ever increasing
threat to the Nation's fiscal sustainability, it is critical that we
adequately fund research to evaluate the programs' efficiency and
effectiveness, and seek ways to curtail spending growth.
---------------------------------------------------------------------------
\5\ Catlin, A, et. al. ``National Health Spending in 2005: The
Slowdown Continues,'' Health Affairs, Vol. 26, No. 1, pp. 142-153
(Jan./Feb. 2007).
---------------------------------------------------------------------------
The Coalition supports a fiscal year 2009 funding level of $45
million in discretionary research and development funding--in addition
to funding for programmatic earmarks--as a critical down payment to
help CMS recover lost resources and restore research to evaluate these
programs, analyze pay for performance and other tools to update payment
methodologies, and to further refine service delivery methods.

NATIONAL INSTITUTES OF HEALTH (NIH)

The NIH reported that it spent $921 million on health services
research in fiscal year 2007--roughly 3.3 percent of its entire
budget--making it the largest Federal sponsor of health services
research. Nevertheless, this represents a $17 million decline over the
previous fiscal year in the portion of NIH's total budget allocated to
health services research.
For fiscal year 2009, the Coalition recommends a funding level of
at least $1 billion--3.3 percent of the nearly $31 billion the broader
health community is seeking for NIH. We recognize the support various
institutes now provide to fund health services research, but this level
of funding should be viewed as our minimum request. We encourage NIH to
increase the proportion of their overall funding that goes to health
services research from 3.3 to 5 percent to assure that discoveries from
clinical trials are effectively translated into health services. We
also encourage NIH to foster greater coordination of its health
services research investment across its institutes.
In conclusion, the accomplishments of health services research
would not be possible without the leadership and support of this
subcommittee. As you know, the best health care decisions are based on
relevant data and scientific evidence. Increased funding for health
services research and health data will yield better information and
lead to improved quality, accessibility, and affordability. We urge the
subcommittee to accept our fiscal year 2009 funding recommendations for
the Federal agencies funding health services research and health data.
If you have questions or comments about this testimony, please
contact Emily Holubowich, Director of Government Relations at 202-292-
6743 or e-mail at [email protected].
______

Prepared Statement of the Coalition of Northeastern Governors

The Coalition of Northeastern Governors thanks you for this
opportunity to provide testimony for the record to the Senate
Subcommittee on Labor, Health and Human Services, and Education, and
Related Agencies regarding fiscal year 2009 appropriations for the Low
Income Home Energy Assistance Program (LIHEAP). The Governors
appreciate the subcommittee's continued support for the LIHEAP program
and recognize the considerable fiscal challenges facing the
subcommittee this year. However, the skyrocketing cost of home energy
has made this program more crucial than ever. The Governors request
that regular fiscal year 2009 LIHEAP block grant funding be
appropriated at the full $5.1 billion level as authorized by the Energy
Policy Act of 2005. The Governors also ask the Congress to appropriate
additional contingency funds to address unforeseen energy emergency
situations.
Funding the LIHEAP block grant at the $5.1 billion level will help
restore some of the purchasing power of the program, provide greater
certainty for program planning, and enable States across the Nation to
provide meaningful assistance to more citizens struggling to pay
unaffordable home energy bills.
LIHEAP is a vital safety net for many of our Nation's most
vulnerable citizens. The program has served as a foundation of other
assistance programs provided by utilities and the private sector, such
as shutoff moratoria and other direct assistance. The highest level of
LIHEAP assistance is provided to households with the lowest incomes
that pay a high proportion of their income for home energy. These low-
income households spend an average of 14 percent of annual income on
home energy, compared to 3.6 percent for all other households. In 2004,
elderly households in receipt of Supplemental Security Income paid
nearly 19 percent of their income for energy, leaving few remaining
funds to pay for food, shelter or medication. LIHEAP provides vital
assistance to elderly households struggling to survive on fixed
incomes, as 41 percent of LIHEAP recipient households include at least
one elderly member.
Adding to the economic stress on these low-income households are
the rapidly escalating costs of heating fuels that have eroded the
purchasing power of the LIHEAP dollar. According to the Energy
Information Administration (EIA), the national average cost of heating
a home has risen from $704 during the winter of 2003-2004 to a
projected $981 this winter--a 39 percent increase. This increase has
far outpaced the growth in income for this population. Faced with
simply unaffordable energy bills, these households take drastic
measures such as keeping their homes at unhealthy or unsafe
temperatures, using unsafe alternative heating options, or accumulating
high levels of home energy debt and the possibility of utility service
shut-off.
At the same time that home energy prices are escalating, the
average LIHEAP benefit has decreased and the number of households
receiving assistance has declined since the peak of fiscal year 2006.
Approximately 5.7 million households--less than 16 percent of those
eligible--now receive LIHEAP assistance (down from 5.8 million in
fiscal year 2006), and the average LIHEAP benefit has decreased from
$464 to $378.
The recent price increases are especially troubling for households
that rely on delivered fuels such as home heating oil and propane.
According to the Department of Energy, roughly 69 percent of the
Nation's 5.3 million households that use home heating oil are in the
Northeast. EIA estimates that households heating primarily with home
heating oil will pay $1,990 this year, or 35.6 percent more than last
year and a 66 percent increase over 3 years. Without an adequate
benefit that can meet the minimum delivery requirement, these
households face the prospect that a dealer will not make a delivery or
will require a surcharge, further reducing the purchasing power of the
LIHEAP benefit.
Households that use natural gas are also struggling with
dramatically increasing home energy costs. While the cost has increased
at a slower rate than home heating oil, households using natural gas
are expected to pay 7.2 percent more than last year, and 32 percent
more than during the winter of 2003-2004. The rising utility bills
result in many of these households accumulating substantial arrearages
and facing the prospect of shutoffs as the moratoria period in some
States ends. A recent report by the American Gas Association found that
the percentage of past due accounts rose from 16.5 percent in 2001 to
21 percent in 2006, and the total amount of uncollectible expenses rose
39 percent between 2003 and 2006. LIHEAP funds can be instrumental in
helping these households stay out of debt or get their utilities
reconnected.
If Federal resources remain level or decline as home energy prices
continue to rise, States face the difficult decision of serving fewer
households in order to maintain some of the purchasing power of the
LIHEAP grant for the program's poorest families, or reducing the level
of benefits to recipients. To deliver maximum program dollars to
households in need, States in the Northeast have incorporated various
strategies to minimize the program's administrative costs including
using uniform application forms to determine program eligibility,
establishing a one-stop shopping approach for the delivery of LIHEAP
and related programs, sharing administrative costs with other programs,
and using mail recertification. However, opportunities to further
reduce LIHEAP administrative costs are limited, since they are already
among the lowest of the human service programs. In spite of these State
efforts to stretch Federal and State LIHEAP dollars, the need for the
program is far too great. Increased, predictable and timely Federal
funding is vital for LIHEAP to assist the Nation's vulnerable, low-
income households faced with exorbitant home energy bills.
An increase in the regular LIHEAP appropriation to the $5.1 billion
level for fiscal year 2009 as well as the appropriation of additional
contingency funds will enable States across the Nation to help mitigate
the potential life-threatening emergencies and economic hardship that
confront the Nation's most vulnerable citizens. With these additional
funds, States can provide assistance to more households in need, offer
benefit levels that provide meaningful assistance, lessen the need for
emergency crisis relief, plan and operate a more efficient program, and
again make optimal use of leveraging and other cost-effective programs.
We thank the subcommittee for this opportunity to share the views
of the Coalition of Northeastern Governors, and we stand ready to
provide you with any additional information on the importance of the
Low Income Home Energy Assistance Program to the Northeast and the
Nation.
______

Prepared Statement of the Commissioned Officers Association of the U.S.
Public Health Service

I write to ask the subcommittee to approve $50 million to support
transformation of the U.S. Public Health Service's Commissioned Corps,
including a new emergency preparedness activity within the Corps.
Secretary Michael O. Leavitt's proposed development of Health and
Medical Response (HAMR) teams is a new initiative resulting from
recommendations to improve public health preparedness and response
following the devastating hurricanes of 2005. The requested funds would
be used to organize, train, equip, and roster medical and public health
professionals in pre-configured and deployable teams.
In the event of a terrorist attack or natural disaster, these HAMR
teams would be the Secretary's first asset in addressing deployment
needs.
All HAMR Team members would be USPHS officers and full-time
employees of the Office of the U.S. Surgeon General. This would
guarantee a dedicated, immediately deployable force. HAMR team members
would maintain a state of readiness through continuous training or
actual deployment, including disaster response assistance to State and
local health departments.
All HAMR team members would receive advanced training in trauma
life support and the emergency medical management of casualties due to
chemical or biological agents or ionizing radiation. HAMR teams would
address not only clinical tasks but the full range of public health
concerns in a major crisis.
Creation of this new emergency response capability was among
Secretary Leavitt's top priorities for fiscal year 2008. The
administration's budget request contained $38 million for this purpose.
Unfortunately, however, the HAMR teams were not funded. They are once
again among the Secretary's top priorities for fiscal year 2009.
The HAMR team proposal grows out of recommendations contained in
the White House report on ``lessons learned'' from the response to the
2005 hurricanes. The performance of the 2,500 USPHS officers in that
crisis was one of the few aspects of the Federal response to draw
widespread praise.
For as long as our Nation remains at risk of terrorist attack, the
Department of Health and Human Services will remain responsible for
detecting and preventing attacks and for responding to mass casualty
events. Because the training of emergency medical teams is essential to
that mission, funding to support the effort should be approved.
On behalf of the Commissioned Officers Association (COA) and the
7,500 active-duty and retired USPHS officers who are its members, I
thank you for your consideration of this request.
______

Prepared Statement of the Cooley's Anemia Foundation

Mr. Chairman and members of the subcommittee: Thank you for the
opportunity to present this testimony to the subcommittee today. My
name is Frank Somma. I live in Holmdel, New Jersey and I am honored to
serve as the National President of the Cooley's Anemia Foundation. As
many members of this subcommittee know, Cooley's anemia, or
thalassemia, is an incurable, fatal genetic blood disorder.
Over the years, this subcommittee has been a consistent supporter
of the programs that exist to improve the lives of our children--
children who suffer from thalassemia. We are very grateful for all that
you have done to help over the years and again, we are asking that you
continue to support the research and the programs that will help lead
to a cure for this dreaded disease.
I could bog you down in a detailed scientific explanation of what
happens physiologically when the human body cannot produce red blood
cells in adequate numbers and of adequate quality to sustain life or
the danger and pain of bi-weekly blood transfusions I am not going to
do that. The important thing for members of this subcommittee to
remember about Cooley's anemia is that it is an incurable, fatal
genetic blood disorder. Period.
In my testimony, I am going to address the following three issues
in what I hope is a clear and succinct manner.
--The first is the immediate need to provide a 5 percent increase to
the CDC's Division of Blood Disorders to fund the thalassemia
blood safety surveillance network. This program works for
thalassemia patients, and for all Americans, by providing a
mechanism to take immediate actions to keep the blood supply
safe when a threat emerges. The President's budget recommends
$1.85 million; we are requesting $1.95 million.
--The second issue is the equally critical need for this subcommittee
to commit our government through the NIH--and more specifically
through NHLBI--to the development of a vigorous, ethical,
progressive and focused gene therapy program that is designed
to cure single-gene disorders in the shortest possible time.
--The third issue is the urgent need to increase funding for the NIH
by a minimum of 6.5 percent this year and to assure the
continuation of desperately needed research through the
Thalassemia Clinical Research Network, which is based at NHLBI.

BLOOD SAFETY SURVEILLANCE

Mr. Chairman, when a baby is diagnosed with Cooley's anemia, or
thalassemia major, the standard of treatment is to begin that child on
blood transfusions. I want to be very clear here that the treatment is
not to give the child a blood transfusion; it is to begin a lifetime
treatment regimen of this most invasive and dangerous intervention.
Once diagnosed, our children receive a blood transfusion every two
weeks for the rest of their lives.
Because Cooley's anemia patients are transfused so regularly and so
often, they represent an ``early warning system'' for problems in the
blood supply. If there is an emerging infection or other problem with
the blood supply, it is our patients that will get it first and,
because of their fragile health, will likely suffer more critically
from secondary complications.
Please understand, for example, that nearly every patient over the
age of 18 today who has thalassemia major also has HIV or hepatitis C,
or both, as a result of their transfusions--or did have it before the
combination of the infectious disease and their underlying genetic
disease killed them.
Blood safety is a major national issue. Surgical and trauma
patients often have no choice but to be transfused. And, it is done on
an emergency basis everyday in hospitals in your states and districts.
Nothing is more important to the patient at the time of transfusion
than that they can be confident that the blood being pumped into their
veins is free from infectious agents--HIV, HCV, or something that none
of us have yet heard and doctors have yet to identify.
The blood safety surveillance program is currently operating very
effectively through the Division of Blood Disorders in the National
Center for Birth Defects and Developmental Disability (NCBDDD) with
about $1.86 million in funding. We are pleased that the President's
budget recommends continuing it, although at a $1.85 million level.
We are respectfully urging that the subcommittee increase this
funding to $1.95 million to reflect inflationary pressures in order to
continue to protect Americans from unnecessary infections and diseases
that may occur in the blood supply. Also, we are requesting that the
subcommittee and its staff remain vigilant in protecting this program
from unjustified and unjustifiable assaults as we saw after the passage
of the fiscal year 2007 Continuing Resolution.

GENE THERAPY

Mr. Chairman, as you know, in the last year or two we have begun to
see evidence of some very good news about gene therapy. After decades
of overblown promises and false starts, we can now see a pathway for
scientists to follow to help make the promise of gene therapy become
the reality of cures. The problem to this point in the long saga that
is gene therapy has not been one of science; it has been one of
expectations. As a society, we all forgot that science requires trial
and error and that experiments are just that--experiments. Sometimes
they succeed, but often they fail. And, when they fail, we need to
analyze what happened and identify how to correct it and then try
again.
Today, gene therapy is advancing at a rapid pace in the rest of the
world. Exciting work is being undertaken in Japan and China, in the UK
and in France. Unfortunately, it is showing less progress the United
States of America and that is not right. We are the international
leaders in scientific research and, in a field like this--fraught with
financial, scientific and ethical minefields--it is essential that
America demonstrate its continued leadership to the world. We set the
highest ethical and moral standards on every one of these issues. We
protect human subjects best. The future of gene therapy as a means of
curing disease is simply too important to leave it to anyone else.
For persons with a single cell mutation disorder like thalassemia
or sickle cell disease or ``boy in the bubble'' disease (SCID), gene
therapy holds tremendous promise for a cure. We are now learning so
much about how to deliver healthy genes to unhealthy cells that we
cannot turn back--nor can we as a nation afford to let down the
scientists in this country who have such a depth of knowledge and
experience. Our friends in Europe and Asia are leaping ahead of us in
this critical area of biomedical research and gene therapy.
We hope that this Congress--speaking through this subcommittee--
will do what we have done and dare the NIH and its grantees to ``cure
something.'' You are investing nearly $29 billion of taxpayer money in
this agency that houses the ``best and the brightest'' in Bethesda and
that funds ``the best and the brightest'' throughout the nation. We as
Americans must never stop striving to reach previously unimaginable
heights. If that means that we have to shake up the status quo and
create a new funding mechanism, let's do it. But let's not continue to
follow the slow going incremental, some might say ``glacial,'' path of
the past.
We need to spend our tax dollars in a coordinated and focused
manner that will maximize the chances that science will unlock the
secrets of how to correct single gene defects. We are gaining direct
knowledge of how to safely proceed, with an experiment currently being
conducted--in France--that may be a breakthrough. It is time for the
United States to step up and lead the world in this life-saving area of
research. We are counting on our representatives in Congress to lead
the way. As I said, this research is being done in other places around
the world. In the United States I have detected a reticence to proceed
because of safety concerns which made news years ago. If we are truly
concerned with safety, doesn't it make sense to embark on gene therapy
here where we know the IRB's will ensure that patients come first?

NIH AND THE THALASSEMIA CLINICAL RESEARCH NETWORK

Mr. Chairman, 8 years ago, working closely with members of this
subcommittee from both sides of the aisle, the CAF convinced the NHLBI
of the need to create a Thalassemia Clinical Research Network. The
purpose of the Network is to create an infrastructure that would enable
the top researchers in the field to collaborate on desperately needed
research projects using common protocols. Today, the Network is up and
running and is the focal point for thalassemia research, most of which
takes place in academic medical centers, literally spread from coast to
coast.
However, there remains a cloud hanging over this, and all other,
research at NIH. As the Biomedical Research and Development Price Index
continues to escalate, the buying power of an NIH that has been flat-
funded for 5 years continues to decrease. There would be nothing wrong
with this if we had cured thalassemia, hemophilia, cystic fibrosis, and
all other genetic and non-genetic diseases. But that is not the case.
There is an enormous amount of work to be done, treatments to be
developed and cures to be found. And there is no one else to do it but
our National Institutes of Health, with the support of our Congress and
President.
I urge the subcommittee to make a commitment this year in this bill
to at the very least a 6.5 percent increase for the National Institutes
of Health. This level of funding will help to restore some of the
purchasing power that has been lost since the end of the 5 year
doubling. It is time to commit to undo the damage that has been done in
the last 5 years. I also urge the committee to assure that NIH shows no
diminution of support the Thalassemia Clinical Research Network.

CONCLUSION

As I indicated at the outset, Mr. Chairman, the Cooley's Anemia
Foundation has three priorities this year:
--Funding the blood safety surveillance program at CDC at $1.95
million;
--An enhanced focus on gene therapy designed to cure something; and,
--At least a 6.5 percent increase in NIH funding and the continuation
of the Thalassemia Clinical Research Network.
Mr. Chairman, every night when I watch my beautiful, smart,
talented 23 year old daughter Alicia suffer from the complications of
thalassemia such as osteoporosis and as I watch her endure daily 8-10
hours of painful drug infusions to remove the excess iron in her system
from her bi-weekly blood transfusions, I know we can do better than
what we are doing now.
Please excuse my passion, but this is the United States of America.
I know we can prevent this disease from happening in newborns. I know
we can improve the lives of those who currently have it. And, most
importantly, I know that we can cure it once and for all.
It is long past time to demand the very best from the very best--
our scientists, our government, and ourselves.
Thank you for your very kind attention and for all the support this
committee has shown to our patients and their families over the years.
______

Prepared Statement of the Council for Opportunity in Education

The Council for Opportunity in Education advocates on behalf of the
Federal TRIO programs, which are intended to promote equal access to
higher education for low-income, first-generation, and disabled
students. For more than 40 years, the Federal TRIO programs--Talent
Search, Upward Bound, Upward Bound Math/Science, Veterans Upward Bound,
Student Support Services, Equal Opportunity Centers, and the Ronald E.
McNair Postbaccalaureate Achievement Programs--have provided the
academic tutoring, personal counseling, mentoring, and other vital
support services that disadvantaged students need to overcome both the
economic and social barriers they face in their pursuit of higher
education.
Currently, TRIO programs serve more than 840,000 students across
the nation, including several U.S. territories. Over the last several
years, program costs and student needs have grown. Yet, because the
programs have not received an increase in funding since fiscal year
2005, TRIO can serve only about 7 percent of the eligible population.
As the United States now ranks 10th among developed nations in the
percentage of 24 to 35 year olds who have completed college, the time
is ripe to make a substantial investment in higher education
opportunities for American students. By providing a $120 million
increase in TRIO funding in fiscal year 2009, Congress can renew its
commitment to serving its most needy and deserving students while also
strengthening the United States' competitiveness in this global,
knowledge-based economy. More specifically, a $120 million increase for
TRIO in fiscal year 2009 would:
--Improve the capacity of TRIO's pre-college access and college-based
retention programs to support students in math and science, a
vital component in the nation's ability to increase global
competitiveness. ($57 million)
For example, TRIO programs would be eligible to receive funding
from this additional money if they commit to undertake activities such
as the following:
1. Talent Search Programs (currently serving nearly 400,000
students) will use the supplementary funding to strengthen pre-algebra
and algebra preparation so that students can succeed in higher level
mathematics;
2. Upward Bound (more than 960 projects) will enhance mathematics
and science curricula to encourage greater numbers to pursue STEM
studies in college;
3. EOCs (currently serving 206,000 individuals, mostly displaced or
under-employed workers) will use the funding to strengthen math
refresher tutoring services;
4. Student Support Services Programs (currently serving about
201,000 students) will provide supplementary funding to enhance
tutoring and other academic support for developmental mathematics and
calculus gateway courses;
5. Ronald E. McNair Post-Baccalaureate Achievement Programs
(serving nearly 4,200 undergraduates contemplating graduate degrees)
will increase undergraduate research opportunities for students
intending to pursue graduate education in the STEM fields.
--Increase the number of SSS programs by 100 to serve an additional
20,000 disadvantaged college students. ($28 million)
This is an SSS grant competition year and, therefore, the perfect
moment to make a stronger federal investment in helping disadvantaged
students earn college degrees. As last year's competitions
demonstrated, there are many quality applications worthy of funding,
and on their own, colleges and universities are not committing the
resources necessary to ensure that students have the support they need
to succeed in college.
--Increase overall TRIO appropriations by 4 percent. ($35 million)
Funding for TRIO programs has not increased since fiscal year 2005.
Projects are struggling to maintain critical core services for
students, and this increase of $35 million, equal to the current rate
of inflation, would help projects sustain their efforts on behalf of
low-income, first-generation students.
We thank the subcommittee for its ongoing commitment to the TRIO
programs and the nation's low-income students. While we understand the
need to balance priorities, we hope you will agree that the TRIO
Programs are critical to the success of many of our Nation's students
and will support these programs in the Labor, Health and Human
Services, and Education Appropriations bill.
Thank you for the opportunity to submit these comments for the
public record and we look forward to working with you to support TRIO
programs and TRIO students everywhere.
______

Prepared Statement of the Council on Social Work Education

On behalf of the Council on Social Work Education, I am pleased to
offer this written testimony to the Senate Appropriations Subcommittee
on Labor, Health and Human Services, Education and Related Agencies for
the official committee record. I will focus my testimony on issues
pertaining to fostering a diverse social work workforce through
training and accessibility to higher education. In particular, this
statement will touch on the importance of funding the Substance Abuse
and Mental Health Services Administration's (SAMHSA) Minority
Fellowship Program at $6 million for fiscal year 2009; the need to
protect the National Institute of Mental Health (NIMH) minority
training program which is also in jeopardy of cancellation; and the
importance of sustaining funding for programs within the Department of
Education that expand accessibility in higher education.

EDUCATING SOCIAL WORKERS TO HELP VULNERABLE POPULATIONS

The Council on Social Work Education (CSWE) is a nonprofit national
association representing more than 3,000 individual members as well as
over 650 graduate and undergraduate programs of professional social
work education. The Council on Higher Education Accreditation (CHEA)
authorizes CSWE to establish national educational standards while
evaluating individual academic programs to determine if these standards
are met for professional accreditation. The central components of these
accreditation requirements include critical-thinking, evidence based
practice, communication skills, human behavior theory and supervised
experiential learning. Social work education focuses students on
leadership and direct practice roles helping individuals, families,
groups, and communities by creating new opportunities that empower
people to be productive, contributing members of their communities.
In particular, social work education prepares students at the
graduate and undergraduate levels for professional practice in the
leadership and staffing of our nation's most vital social service
programs. Social workers help vulnerable populations in society--such
as children and adults with physical or mental disabilities, trauma
victims, individuals under stress or facing coping challenges both
temporary and permanent, and segments of society needing assistance to
adjust to changing circumstances or overcome injustices--be as healthy
and productive as possible. Social work educational programs provide
rigorous academic experiences in both classroom and field agency or
organizational internship settings and professional social work
graduates are employed in a wide array of settings such as public
schools, veterans' hospitals and general as well as other special
service health care facilities, substance abuse prevention and
treatment programs, child protective services, family service settings,
and gerontological long-term care facilities. CSWE recognizes that
fostering a diverse workforce is key to providing the best possible
service to populations in need.

FOSTERING A DIVERSE SOCIAL WORK WORKFORCE THROUGH TRAINING AND
ACCESSIBILITY

Minority Fellowship & Training Programs, Department of Health and Human
Services
In 1974, amidst concerns about the limited number of minority
scholars able to do indigenous research to improve services to minority
communities, the National Institute of Mental Health (NIMH) within the
National Institutes of Health (NIH) initiated a training program with
the goal of increasing the number of minority doctoral students
focusing their research in mental health. A few years later the
Substance Abuse and Mental Health Services Administration (SAMHSA)
created its own program that strived to achieve greater numbers of
minority doctoral students preparing for leadership roles in the mental
health and substance abuse field. These two programs provide grants to
professional organizations which in turn administer fellowship grants
to pre- and post-doctoral students. CSWE is one of the administering
organizations. Together these programs make up CSWE's Minority
Fellowship Program (MFP).
The MFP has been instrumental in the recruitment and training of
underrepresented groups (African-American, Asian-American, Latinos,
American Indians), in the field of substance abuse and mental health.
Through effective recruitment and selection, the MFP has facilitated
minority students' retention and success in doctoral programs in mental
health and substance abuse. The MFP fellows receive a unified program
of assistance to include mentoring, research training, access to
professional networks, and on-going guidance in cooperation with their
department advisors, which supports success in all facets. CSWE has
supported over 500 minority fellows since the program's inception and
two-thirds of those students have gone on to receive their doctoral
degrees. They are employed at universities and agencies throughout the
United States.
The administration's fiscal year 2009 budget request proposes to
eliminate funding for the SAMHSA program, which received $3.8 million
in fiscal year 2008 and $4.2 million in fiscal year 2007. The Minority
Fellowship Program directly contributes to reversing disparities in
mental health services and the quality of those services to minority
populations. For this reason, CSWE urges the subcommittee to restore
this vital SAMHSA program for fiscal year 2009 and in addition provide
much needed additional resources in the sum of $6 million so that the
program can continue to turnout minority mental health professionals
equipped to provide culturally competent, accessible mental health and
substance abuse services to diverse populations.
In addition to the SAMHSA MFP, the minority education program in
NIH's mental health institute is also in jeopardy. The NIMH minority
education program focuses on increasing the number of minority doctoral
students conducting mental health research; it is the ``research'' side
of mental health training while the SAMHSA program represents the
``clinical'' side.
NIMH Director Thomas Insel has expressed his intent to eliminate
funding for this program upon the expiration of the sole remaining
institutional training grant in 2010. As the subcommittee knows, new
and young investigators continue to face an up-hill climb in terms of
breaking into the NIH grant pool for the first time. NIH Director Elias
Zerhouni has testified before your subcommittee several times about the
need for ``new talent'' at NIH, stating as recently as last year that
``One of NIH's highest priorities will be to preserve the ability of
new and junior scientists with fresh ideas to enter the competitive
world of NIH funding.''
While we applaud NIH's efforts to diversify the NIH grant pool
through the development of such programs as the ``Pathway to
Independence'' program and others, at a time when NIH has pledged a
commitment to growing ``fresh talent,'' NIMH is essentially abandoning
a proven program that has educated and prepared hundreds of minority
scholars for research and leadership in the mental health sciences.
While we understand that this issue cannot be fixed via the annual
appropriations process, we urge the subcommittee to put pressure on NIH
to reconsider its intent to cut off funding for this crucial training
program beginning in 2010.
Aid for Institutional Development, Department of Education
Fostering a diverse workforce is central to ensuring that we are
able to provide culturally competent services to minority populations.
Social workers must be able to relate to the communities they serve.
However, getting minority students into the workforce pipeline is often
difficult due to the many barriers to higher education facing minority
and lower-income populations.
The Department of Education supports several programs whose goal is
to expand the accessibility of higher education to lower-income and
minority populations. These programs provide financial assistance to
minority-serving institutions to address needs in academic quality,
student services, educational equipment acquisition, facility
construction, and faculty and staff development. In turn, funds for
these programs make these institutions more accessible while at the
same time culturally relevant.
For fiscal year 2009, the administration has proposed to
substantially cut funding for these very important programs.
Specifically, cuts are proposed for programs geared toward
strengthening Tribally Controlled Colleges and Universities; Alaska
Native and Native Hawaiian-serving Institutions; Historically Black
Colleges and Universities; Historically Black Graduate Institutions;
Predominantly Black Institutions; Asian American and Native American
Pacific Islander-serving, and Native American-serving nontribal
institutions.
CSWE asks the subcommittee to reject the President's proposed cuts
for fiscal year 2009 and provide these programs with at least the
amount enacted for fiscal year 2008. Minority-serving institutions like
these play a vital role in educating the diverse workforce that is the
backbone of the social work profession, and since they do not have
access to the same resources (large endowments, high tuition) as other
institutions, they depend heavily on this modest Federal support to
function. While the administration's rationale for these cuts is that
the College Cost Reduction Act of last year provides additional
mandatory funding for these institutions, we presume that Congress
provided those funds so that minority-serving institutions could move
forward, not remain stagnant.
Thank you for the opportunity to express these views on behalf of
the Council on Social Work Education. We hope the subcommittee will
take these points into consideration as you move forward in the fiscal
year 2009 appropriations process. Please do not hesitate to contact me
with any questions.
______

Prepared Statement of the Cystic Fibrosis Foundation

On behalf of the Cystic Fibrosis Foundation, and the 30,000 people
with cystic fibrosis (CF), we are pleased to submit the following
testimony regarding fiscal year 2009 appropriations for cystic
fibrosis-related research at the National Institutes of Health (NIH)
and other agencies.

ABOUT CYSTIC FIBROSIS

Cystic fibrosis is a life-threatening genetic disease for which
there is no cure. People with CF have two copies of a defective gene,
known as CFTR, which causes the body to produce abnormally thick,
sticky mucus, which clogs the lungs and results in fatal lung
infections. The thick mucus in those with CF also obstructs the
pancreas, causing patients difficulty in absorbing nutrients from food.
Since its founding, the Cystic Fibrosis Foundation has maintained
its focus on promoting research and improving treatments for CF. CF has
been significantly transformed from a childhood death sentence into a
chronic disease, which requires a rigorous daily regimen of therapy.
It is a promising time for CF research. More than thirty drugs are
now in development to treat CF, some which treat the basic defect of
the disease, while others target its symptoms. Through the research
leadership of the Cystic Fibrosis Foundation, the life expectancy of
individuals with CF has been boosted from less than six years in 1955
to nearly 37 years in 2007. Today, almost 45 percent of people with CF
are 18 or older. This improvement in the life expectancy for those with
CF can be attributed to research advances, which this testimony will
discuss in some detail later, and to the teams of CF caregivers who
offer specialized care of the highest quality. Although life expectancy
has improved dramatically, we continue to loose young lives to this
disease. Our progress is not sufficient for those affected by CF.
The promise for people with CF is in research. In the past five
years, the Cystic Fibrosis Foundation has invested over $660 million in
its medical programs of drug discovery, drug development, research, and
care focused on life-sustaining treatments and a cure for CF. A greater
investment is necessary, however, to accelerate the pace of discovery
and development of CF therapies. This testimony focuses on the
investment that will be required to discover and develop new CF
treatments rapidly and efficiently and to encourage research for a
cure.

SUSTAINING THE FEDERAL INVESTMENT IN BIOMEDICAL RESEARCH

This subcommittee and Congress are to be commended for their
steadfast support for biomedical research, and their commitment to the
National Institutes of Health (NIH), including the effort to double the
NIH budget between fiscal year 1999 and fiscal year 2003. This
impressive increase in funding resulted in a revolution in medical
research, fueling discoveries that benefit all Americans.
If we fail to adequately fund the NIH so that it can capitalize on
scientific advances, we risk losing the momentum that the doubling
generated. The flat-funding of the NIH has already led to a decrease in
purchasing power, limiting the research that could have been conducted.
The Cystic Fibrosis Foundation joins the Ad Hoc Group for Medical
Research to recommend increasing the NIH budget by at least 6.5 percent
in fiscal year 2009, or $1.9 billion over fiscal year 2008. This
increased investment will help maintain the NIH's ability to fund
essential biomedical research today that will provide tomorrow's care
and cures.

STRENGTHEING OUR NATION'S RESEARCH INFRASTRUCTURE

We urge the NIH to pay special attention to advances in treatment
methods and mechanisms for translating basic research into therapies
that can benefit patients. The Cystic Fibrosis Foundation has been
recognized for its own research approach that encompasses basic
research through Phase III clinical trials, and has created the
infrastructure required to accelerate the development of new CF
therapies. As a result, we now have a pipeline of more than thirty
potential therapies that are being examined to treat people with CF.
These therapies aim to treat CF on multiple fronts, an important
consideration for a disease that affects the body in multiple ways.
Because CF is a disease which impacts several systems in the body,
different institutes at NIH share responsibility for CF research.
Having multiple responsible institutes presents roadblocks to CF
research in that there can be imperfect communication among the
institutes regarding research in the field. This can limit our ability
to capitalize on all research opportunities. Moreover,
multidisciplinary research approaches of the sort we believe are most
promising in CF, may be disadvantaged in the NIH system of review and
funding.

The Clinical and Translational Science Awards (CTSA)
The Clinical and Translational Science Awards (CTSA) program was a
key component of the NIH's Roadmap initiative. The program is designed
to transform how clinical and translational research is conducted,
ultimately enabling researchers to provide new treatments more
efficiently and quickly to patients. There have been significant cuts
to the program since its launch in 2006. Tremendous effort brought
institutions together to rally around this program, yet current funding
levels make it difficult for the current 24 programs (out of a planned
60) to succeed.
This program is largely funded and managed by the National Center
for Research Resources (NCRR). Key to the success of the CTSAs is the
development of cost sharing for use of infrastructure services, such as
the General Clinical Research Centers (GCRC). In the past, all services
within the NIH's GCRC were provided at no cost to investigators. The
other institutes expected that they could reduce their research budgets
by having investigators use the GCRC where clinical care such as
inpatient stays, lab tests, nursing staff, was available at no
additional cost. Today, individual investigators must provide funds for
clinical care cost sharing from grants funded from other NIH
institutes.
As research becomes more expensive, it becomes even more critical
to ensure support for translational research, that is, research that
moves a potential therapy from being developed in the lab into one that
is delivered to the public. In order to maximize the success of the
CTSA, multiple institutes within the NIH must be able to provide
financial resources for the program. Stronger support for the CTSA is
needed because the program is a critical mechanism for improving the
translational research activities necessary to develop treatments for
common and rare diseases alike.

Supporting Clinical Research
A significant discrepancy still persists between the funding
awarded to clinical and basic laboratory investigators for first awards
and the discrepancy is even greater for second awards and prolonged
funding of clinical investigators. The NIH must maintain the ability to
support translational research and the investigators piloting those
projects. Without this support, the NIH stands to lose an entire
generation of clinically trained individuals committed to clinical
research. The ``generation gap'' that would be created by the loss of a
cache of clinical researchers would not only affect the ability of the
NIH to continue to conduct world-class clinical investigation, but
would also jeopardize the standing of the United States as the world's
premiere source for biomedical research.

FACILITATING CLINICAL RESEARCH AND DRUG DEVELOPMENT

The Cystic Fibrosis Foundation applauds the efforts of NIH to
encourage greater efficiency in clinical research. The Foundation has
been a leader in creating a clinical trials network to achieve greater
efficiency in clinical investigation. Because the CF population is so
small, a more significant portion of people with the disease must
partake in clinical trials than in most other diseases. This unique
challenge prompted the Foundation to streamline our clinical trials
processes. Research conducted by the Foundation is more efficient than
ever before. The clinical trials network is a model for other disease
groups.
We have a permanent network of clinical trial sites and have
centralized and coordinated data management and analysis functions and
data safety monitoring. Among the results of this outstanding network--
called the Therapeutics Development Network--are the ability to achieve
rapid accrual to trials and the capacity to conduct multiple trials
simultaneously, even in a population of 30,000 CF patients. Since the
TDN's inception, it has conducted over 40 trials. Of course, the
ultimate goal of a centralized clinical trials system is the
acceleration of the therapeutic development process.
Although we have achieved significant efficiencies in our clinical
trials system, we still encounter substantial slowdowns in the review
of our multi-institutional trials by the institutional review boards
(IRBs) at each of the institutions participating in the trials. We are
pleased that the Department of Health and Human Services has encouraged
the exploration of alternative models of IRBs, including central IRBs,
by the CTSA, however we encourage Congress to urge the Department to
demonstrate more aggressive leadership in persuading all academic
institutions to accept review by a central IRB--without insisting on
parallel and often duplicative review by their own IRB--at least in the
case of multi-institutional trials in rare diseases. Such central
oversight can help provide greater expertise to improve trial design
and enable critical research to move forward in a timelier manner
without undermining patient safety.

Pursuing New Therapies: The Cystic Fibrosis Therapeutics Development
Network
The Cystic Fibrosis Foundation requests that the committee allocate
$1.5 million in Federal funding in fiscal year 2009 to support a much-
needed expansion of our clinical research program, the Therapeutics
Development Network (TDN), through the Coordinating Center at
Children's Hospital & Regional Medical Center in Seattle, Washington.
This will provide a significant investment in the Cystic Fibrosis
Foundation's ongoing efforts to meet the demand for testing of all the
promising new therapies for cystic fibrosis.
Designating Federal funding for the Cystic Fibrosis Therapeutics
Development Network will accelerate testing of new therapies for CF.
The TDN plays a pivotal role in accelerating the development of new
treatments to improve the length and quality of life for cystic
fibrosis patients. Lessons learned from centralization of data
management and analysis and data safety monitoring in the TDN will be
useful in designing clinical trial networks in other diseases. Again,
we urge the committee to provide $1.5 million to Children's Hospital &
Regional Medical Center in Seattle, Washington for this important work.

Partnership with the National Center for Research Resources
As mentioned previously, the Institutional CTSA program is an
initiative of particular importance to CF. This NIH Roadmap program
administered by the NCRR encourages novel approaches to clinical and
translational research, enhances the utilization of informatics, and
strengthens the training of young investigators. The Cystic Fibrosis
Foundation has enjoyed a productive relationship with the NCRR to
support our vision for improving clinical trials capacity through its
early financial support of the TDN. However, the CF Foundation urges
NCRR to reverse its decision to reject funding for disease-specific
networks in favor of those without a disease focus. As a result of this
policy, some of the best clinical research consortia are prohibited
from competing for NCRR grants, including but not limited to the CF
TDN.

SUPPORTING DRUG DISCOVERY

While much of this testimony has focused on clinical research, new
therapies rely on solid basic research. The CF Foundation's clinical
research is fueled by a vigorous drug discovery effort; early stage
translational research of promising strategies to find successful
treatments for this disease. Several research projects at the NIH hold
the promise of expanding our knowledge about the disease, which may
lead to potential interventions to alter its course. We strongly
support this important research, which fuels our efforts to find a
cure.

Protein Misfolding & Mistrafficking
The Cystic Fibrosis Foundation urges the NIH to devote special
attention to research in protein misfolding and mistrafficking, an area
which may yield significant benefits for CF and other diseases where
misfolding is an issue. We applaud the National Heart, Lung and Blood
Institute (NHLBI), and the National Institute of Diabetes and Digestive
and Kidney Diseases (NIDDK) for their initiatives that target research
on protein misfolding, and urge an aggressive commitment to facilitate
continued exploration in this area to build upon promising discoveries.
Additionally, we urge funding by the National Institute of General
Medical Sciences (NIGMS) for the creation of tools and reagents and
advances in techniques that will allow for precision monitoring of
folding and trafficking events and for the sharing of resulting data
that would complement the efforts of NIDDK--and NHLBI--funded
investigations in this area.

Opportunities In Animal Models
In particular, the Cystic Fibrosis Foundation has been encouraged
to see a substantial NIH investment in a research program through the
University of Iowa to study the effects of CF in a pig model. The
recent birth of a pig engineered to have a mutation in its CFTR gene is
the first time a large animal model of a genetic disease has been
created. The program, funded through research awards from both the
Cystic Fibrosis Foundation and NHLBI, bears great promise to help make
significant developments in the search for a cure. We encourage
additional funding in this area to create a facility that would enable
researchers beyond just those at the University of Iowa to conduct
their research. Such a facility is needed as many institutions do not
have the infrastructure needed to house and care for large animals.

Small Business Innovation Research Program at NIH
Small Business Innovation Research (SBIR) program grants through
the NIH have helped many small biotechnology and pharmaceutical
companies to develop vital treatments for a variety of diseases.
Several companies developing CF treatments have used SBIR grants to
help in their development process.
One company, PTC Therapeutics, previously received an SBIR grant
while developing a drug. That minor infusion of money was enough to
allow the company to take innovative risks in developing a second drug,
PTC-124. PTC-124 proved to be so promising for multiple diseases,
including CF, that the company was awarded $15 million by the NIH to
continue development. The initial support of the SBIR grant allowed for
one innovation to follow another. By continuing to ensure that the NIH
has adequate funding for small dollar-amount programs like SBIR, great
things can emerge.
The SBIR program could provide further support by designating that
a portion of all grants awarded must be used for rare disease research.
With such a small portion of the population likely to purchase the
drugs, research to produce drugs to treat rare diseases is often
considered too large a financial risk to take on. It is important to
note, however that there are over 25 million Americans with a rare
disease. By directing even small dollar grants specifically to help
develop drugs for these diseases, biotechnology and pharmaceutical
companies can receive the financial spark that makes drug development
for rare diseases less risky.
On behalf of the Cystic Fibrosis Foundation, we thank the committee
for its consideration. Congress has reason to be proud of its role in
supporting NIH as the world's leader in biomedical research. The NIH
has spent decades on the basic research that made our discoveries
possible and to let that information languor for lack of funding would
be tragic indeed.
Dr. Zerhouni has wisely focused on translational research as a
touchstone for ensuring the relevance of the NIH to the American
public. The CF Foundation is the perfect example of this notion, having
devoted our own resources to developing treatments through drug
discovery, clinical development, and clinical care. Our patient
registry allows us to track outcomes at the patient, center, and
national level and learn more about the course of this disease and how
to fight it. Our efforts are paying off. This spring we received news
that one of the drugs in our pipeline showed remarkable promise in a
clinical trial and we are increasingly more hopeful that this discovery
will bring us even closer to a cure. Encouraged by our successes, we
believe the experience of the CF Foundation in clinical research can
serve as a model for research on other orphan diseases and we stand
ready to work with NIH and Congressional leaders.
______

Prepared Statement of the Dystonia Medical Research Foundation

SUMMARY OF RECOMMENDATIONS FOR FISCAL YEAR 2009

--A minimum 6.5 percent funding increase for the National Institutes
of Health and its Institutes and Centers.
--Urge the National Institute on Neurological Disorders and Sroke,
the National Institute on Deafness and Other Communication
Disorders, and the National Eye Institute to expand their
research portfolios on Dystonia.
Dystonia is a neurological movement disorder characterized by
powerful and painful involuntary muscle spasms that cause the body to
twist, repetitively jerk, and sustain postural deformities. There are
several different variations of dystonia, including; focal dystonias,
which affect specific parts of the body, and generalized dystonia,
which affect many parts of the body at the same time. Some forms of
dystonia are genetic and others are caused by injury or illness.
Dystonia does not affect a person's consciousness or intellect, but is
chronic and progressive. In North America alone, conservative estimates
indicate that between 300,000 and 500,000 individuals suffer with
dystonia. Currently, there is no known cure and treatment options
remain limited.
While the underlying mechanisms of dystonia remain a mystery and
the onset of symptoms can occur for a number of reasons, two therapies
have emerged with proven health benefits to the dystonia patient
community. Botulinum toxin injections and deep brain stimulation have
shown varying degrees of success, depending on the individual, in
alleviating a dystonia patient's symptoms. More research is needed to
fully understand how to combat and cure dystonia, and in the mean time,
maintaining patient access to life-improving therapies remains
critical.

DEEP BRAIN STIMULATIONS (DBS)

Deep brain stimulation (DBS) is a surgical procedure that was
originally developed to treat Parkinson's disease, but is now being
applied to severe cases of dystonia. A neurostimulator, or brain
pacemaker, is surgically implanted and delivers electrical stimulation
to the areas of the brain that control movement. While the exact
reasons for effectiveness are unknown, the electrical stimulation
blocks abnormal nerve signals that cause abnormal muscle spasms and
contractions.
Since DBS was approved for use by dystonia patients in 2003, it has
drastically improved the lives of many individuals. Results have ranged
from quickly regaining the ability to walk and speak, to regaining
complete control over ones body and returning to an independent life as
an able-bodied person. DBS is currently used to treat severe cases of
generalized dystonia, but its promising role in treating focal
dystonias is being explored and requires continuous support. Surgical
interventions are a crucial and active area of dystonia research and
may continue to lead to the development of promising treatment options.

BOTULINUM TOXIN INJECTIONS (BOTOX/MYOBLOC)

The introduction of botulinum toxin as a therapeutic tool in the
late 1980s revolutionized the treatment of dystonia by offering a new,
localized method to significantly relieve symptoms for many people.
Botulinum toxin, a biological product, is injected into specific
muscles where it acts to relax the muscles and reduce excessive muscle
contractions.
Botulinum toxin is derived from the bacterium Clostridium
botulinum. It is a nerve ``blocker'' that binds to the nerves that lead
to the muscle and prevents the release of acetylcholine, a
neurotransmitter that activates muscle contractions. If the message is
blocked, muscle spasms are significantly reduced or eliminated.
Injections of botulinum toxin should only be performed by a
physician who is trained to administer this treatment. The physician
needs to know the clinical features and study the involuntary movements
of the person being treated. The physician doing the treatment may
palpate (touch) the muscles carefully, trying to ascertain which
muscles are over-contracting and which muscles may be compensating. In
some instances, such as in the treatment of laryngeal dystonia, a team
approach including other specialists may be required.
For selected areas of the body, and particularly when injecting
muscles that are difficult or impossible to palpate, guidance using an
electromyograph (EMG) may be necessary. For instance, when injecting
the deep muscles of the jaw, neck, or vocal cords, an EMG-guided
injection may improve precision since these muscles cannot be readily
palpated. An EMG measures and records muscle activity and may help the
physician locate overactive muscles.
Injections into the overactive muscle are done with a small needle,
with one to three injections per muscle. Discomfort at the site of
injections is usually temporary, and a local anesthetic is sometimes
used to minimize any discomfort associated with the injection. Many
dystonia patients frequently rely on botulinum toxins injections to
maintain their improved standard of living due to the fact that the
benefits of the treatment peak in approximately four weeks and lasts
just 3 or 4 months. Currently, FDA approved forms of botulinum toxin
include Botox and Myobloc.

DYSTONIA AND THE NATIONAL INSTITUTES OF HEALTH (NIH)

Currently, three Institutes at the National Institutes of Health
(NIH) conduct medical research regarding dystonia. They are the
National Institute of Neurological Disorder and Stroke (NINDS), the
National Institute on Deafness and Other Communication Disorders
(NIDCD), and the National Eye Institute (NEI).
NINDS has released important Program Announcements in recent years
to study the causes and mechanisms of dystonia. These awards covered a
wide range of research areas, which included gene discovery, the
genetics and genomics of dystonia, the development of animal models of
primary and secondary dystonia, molecular and cellular studies
inherited forms of dystonia, epidemiology studies, and brain imaging.
DMRF often works with NINDS to support as much critical research as
possible and advance understating of dystonia.
NIDCD has funded many studies on brainstem systems and their role
in spasmodic dysphonia. Spasmodic dysphonia is a form of focal
dystonia, and involves involuntary spasms of the vocal cords causing
interruptions of speech and affecting voice quality. Our understanding
of spasmodic dysphonia has been greatly enhanced by research
initiatives at NIDCD, like the brainstem systems studies.
NEI focuses some of its resources on the study of blepharospasm.
Blepharospasm is an abnormal, involuntary blinking of the eyelids from
an unknown cause that is associated with abnormal function of the basal
ganglion. The condition can progress to the point where facial spasms
develop. Presently, NEI is conducting a study entitled, Mexiletine for
the Treatment of Focal Dystonia and a Doxil Blepharospasm Treatment
Trial, both of which have the potential to significantly improve
treatment options for blepharospasm patients.
DMRF also supports many extramural researchers studying dystonia.
Research includes: exploring improved clinical rating scales for
dystonia, elevations of sensory motor training, utilizing Botox as a
possible treatment for focal hand dystonia, characterization of
abnormalities in sensory regions of the brain, treatments for spasmodic
dysphonia, deep brain stimulation (the direct electrical stimulation of
specific brain targets), non-invasive transcranial brain stimulation,
anatomy imaging of the affect of dystonia on brain activity, and
exploring the link between laryngitis and spasmodic dysphonia.
Recent years of near level-funding at NIH have negatively impacted
the mission of its Institutes and Centers. For this reason, DRMF
applauds efforts like Senators Tom Harkin (D-IA) and Arlen Specter's
(R-PA) adopted amendment to the fiscal year 2009 Senate Budget
Resolutions which calls on appropriators to provide NIH with a 10.3
percent funding increase. DRMF urges this Subcommittee to show strong
leadership in pursuing such a substantial funding increase.
For fiscal year 2009, DMRF recommends a funding increase of at
least 6.5 percent for NIH and its Institutes and Centers.
For fiscal year 2009, DMRF recommends that the National Institute
on Neurological Disorders and Stroke, the National Institute on
Deafness and Other Communication Disorders, and the National Eye
Institute be urged to increase their research activities regarding
dystonia and partner with voluntary health organizations to promote
dystonia research and awareness.
the dystonia medical research foundation (dmrf)
The Dystonia Medical Research Foundation was founded over 30 years
ago and has been a membership-driven organization since 1993. Since our
inception, the goals of DMRF have remained: to advance research for
more effective treatments of dystonia and ultimately find a cure; to
promote awareness and education; and support the needs and well being
of affected individuals and their families.
Thank you for the opportunity to present the views of the
functional dystonia community.
______

Prepared Statement of the Endocrine Society

The Endocrine Society would like to submit the following testimony
regarding fiscal year 2009 Federal appropriations for biomedical
research, with emphasis on appropriations for the National Institutes
of Health. The Endocrine Society is the world's largest and most active
professional organization of endocrinologists representing over 14,000
members worldwide. Our organization is dedicated to promoting
excellence in research, education, and clinical practice in the field
of endocrinology. The Society is comprised of thousands of researchers
who depend on Federal support for their careers and their scientific
advances.
A half century of sustained investment by the United States Federal
Government in biomedical research has dramatically advanced the health
and improved the lives of the American people. The National Institutes
of Health (NIH) specifically has had a significant impact on the United
State's global preeminence in research and fostered the development of
a biomedical research enterprise that is unrivaled throughout the
world. As the world's largest supporter of biomedical research, the NIH
competitively awards extramural grants and supports in-house research.
However, with the continued decline in real dollars allocated to
biomedical research each year by the Federal Government, the
opportunities to discover life-changing cures and treatments have
already begun to decrease.
Unfortunately, the gains experienced by the NIH during the doubling
period have not kept pace with inflation. In fiscal year 2008, the NIH
received only a $300 million dollar increase and it may receive no
increase in fiscal year 2009 unless Congress alters the President's
budget request. These funding levels are significantly below the 3.5
percent increase needed simply to maintain NIH's existing purchasing
power. In order to fully understand the importance of maintaining the
growth experienced during the doubling period, policymakers must first
understand the impact that research programs have on patients and
scientists.
Biomedical research funds allocated by the Federal Government
support both basic and translational research, ensuring that the
discoveries made in the laboratory become realistic treatment options
for patients suffering from debilitating and life-threatening diseases.
In addition to improving quality and length of life, these advances in
treatment also reduce the health care costs of our Nation. Diabetes is
a devastating condition that affects an increasingly large number of
Americans and requires a large proportion of the Nation's healthcare
spending. More than 20 million Americans are affected by either type 1
or type 2 diabetes, and 11 percent of the Nation's health care
expenditures go to diabetes care. However, only about 3.5 percent of
the National Institutes of Health (NIH) budget went to diabetes
research in 2006. Congressional funding for diabetes research has been
generous, but increasing incidence requires increased funding in order
to stave off rising health care costs.
No new diabetes medications would have ever been developed without
federally supported basic and clinical research. The discovery of
insulin and the collaborative research effort of basic and clinical
scientists eventually led to the approval of a new class of medications
for diabetes, essentially the first new treatments of diabetes in the
past 80 years. Without the continued support of both basic and clinical
research in diabetes, these medications would have never been
developed. Now, with this broadened portfolio of treatments, it is
possible to help most people with diabetes achieve optimal blood sugar
control.
However, it is clear that there are many more pathways that remain
to be discovered. These newly discovered pathways require continued
research to bridge the gap from the basic lab bench and translate these
discoveries for patients to use. The primary goals of medicine are to
prevent and treat disease and to reduce suffering. Continued Federal
support for basic science and clinical research in diabetes will go a
long way toward attaining those goals.
These advances in diabetes treatment would not have been possible
without the efforts of the scientists who have chosen to dedicate their
lives' work to identifying the next treatment or cure. As the amount of
real dollars allocated to Federal research funding declines, so too do
the opportunities for researchers. As a result, scientists are often
forced to find other careers or move to other countries to continue
their research, depleting the pool of talent that government agencies
and pharmaceutical companies have to draw from. Fewer scientists and
less research would result in this country losing its place as a leader
in medical progress. The U.S. Government must acknowledge this
potentially bleak future and place more value and emphasis on research
and development efforts. Without these scientists in our workforce,
many medical breakthroughs will either never happen or will happen as a
result of overseas research.
The Endocrine Society remains deeply concerned about the future of
biomedical research in the United States without sustained support from
the Federal Government. The Society strongly supports the continued
increase in Federal funding for biomedical research in order to provide
the additional resources needed to enable American scientists to
address the burgeoning scientific opportunities and new health
challenges that continue to confront us. For fiscal year 2009, The
Endocrine Society recommends that the NIH receive $31.1 billion in
order to recoup the losses caused by biomedical inflation over the last
few years, fund necessary new research programs, and build on the
discoveries made during the doubling period.
______

Prepared Statement of the FSH Society, Inc.

Mr. Chairman, Honorable Senator Specter and Honorable Senator Tom
Harkin, thank you for the opportunity to testify before your
subcommittee.
I am here to remind you that muscular dystrophy (MD) is still
taking its toll. As a patient with facioscapulohumeral muscular
dystrophy (FSHD), I have experienced the constant loss of function this
disease leaves in its wake.
We request this year in fiscal year 2009 immediate and necessary
help for those of us coping with and dying from facioscapulohumeral
muscular dystrophy, FSHD and MD, as we did in fiscal year 2008.
Specifically we ask that the Senate and the Appropriations Subcommittee
on Labor, HHS, Education and Related Agencies consider:
1. Resuming the 5 year doubling of the National Institutes of
Health (NIH) budget. Over the past year the research funding situation
has gone from bad to worse and we have lost opportunities to fund
excellent research.
2. Appropriating $80 million to MD research at the NIH in fiscal
year 2009 and steadily increasing this amount to at least $125 million
annually over the next 5 years.
3. Making NIH funding comprehensive for basic research in each of
the nine types of MD as well as creating an equitable distribution for
each MD across the Senator Paul D. Wellstone Muscular Dystrophy
Cooperative Research Center network, program projects, basic research
projects, clinical research, training programs and translational
research programs. We explicitly draw your attention to the subtle
nuance of mandating NIH to have centers and comprehensive research
portfolio ``in all'' the muscular dystrophies, versus, NIH having
centers and a comprehensive research portfolio ``in each of'' the
muscular dystrophies. This seemingly insignificant one word addition
transforms death into life for all patients and families with MD.
Our first request calls for increasing the NIH budget and resuming
the 5 year doubling. The wars in Iraq, Afghanistan, tax cuts and the
turmoil in the financial markets have essentially halted any progress
in biomedical research. We all know that America has fallen far behind
in biomedical research funding. As a person with a disease it is hard
to reconcile the generosity of the Congress towards the wars, and
bailing out institutions that have put us all at financial risk,
against the lack of action on behalf of sick and dying citizens. The
NIH budget at $29.2 billion is a miniscule fraction of these other
expenses. Doubling a tiny fraction is still a tiny fraction. For those
in Congress who ask the NIH where are the cures--consider that the NIH
budget of $29.2 billion covering countless thousands and thousands of
diseases is a fraction of the market capitalization of a large
pharmaceutical company covering a few disease areas. Consider also that
the main job of NIH is basic science, not drug development, and that
the pharmaceutical companies, the American public and people throughout
the world benefit directly from the NIH investment in science. Please
act now to refocus spending on American infrastructure before trust and
confidence is lost.
Our second request calls for NIH to build and grow its muscular
dystrophy (MD) disease area funding to a level commensurate with
diseases of similar burden. A wide disparity still exists in funding
for MD. This is a matter for both Appropriations and for the NIH with
its wide discretion on funding for diseases. More funding would help
balance out these disparities and accelerate treatments and cures for
diseases. We request that the Director of the NIH consider a more
equitable amount for MD that is solidly in line with its disease peers
at $80 to $125 million.
Our third request asks the Appropriations Committee to request that
the Director of the NIH increase the amount of FSHD research and
projects in its portfolios using all available mechanisms and
interagency committees. Given the knowledge base and current
opportunity for breakthroughs in ameliorating, treating and perhaps
curing FSHD it is inequitable that only two of the twelve NIH
institutes covering muscular dystrophy have a handful of research
grants for FSHD. Why is FSHD research virtually non-existent in the
Senator Paul D. Wellstone MD Cooperative Research Centers (CRCs)?
Funding should include projects from the NIH roadmap, extramural
programs, intramural programs, Senator Paul Wellstone MD CRCs and
similar program projects that have a major focus on FSHD.
FSHD is the second most prevalent adult muscular dystrophy. The
incidence of the disease is conservatively estimated to be 1 in 20,000.
The prevalence of the disease, those living with the disease ranges
from 15,000 to 40,000 Americans based on our increasing experiences
with the disease and accurate diagnostic tests. For men, women, and
children the major consequence of inheriting FSHD is a lifelong
progressive and severe loss of all skeletal muscles. FSHD is a
terrible, crippling and life shortening disease. It is genetically
transmitted to children and it affects entire family constellations.
How is facioscapulohumeral muscular dystrophy (FSHD) research at
the NIH doing in 2008, 7 years after the MD CARE Act 2001 was passed,
and, 13 years after our first testimony in person before the Honorable
Senator Harkin of this honorable Committee?
We applaud Dr. Story Landis, Director, National Institute of
Neurological Disorders and Stroke (NINDS), and, current Chair of the
Muscular Dystrophy Coordinating Committee (MDCC); Dr. Stephen I. Katz,
Director, National Institute of Arthritis and Musculoskeletal Disorders
(NIAMS) and past-Chairman of the MDCC; Dr. John Porter, Program
Director Muscular Dystrophy, NINDS, and Executive Secretary of the
MDCC, and; Dr. Glen Nuckolls, Program Director Muscular Dystrophy,
NIAMS, for their extraordinary comprehension, insight, accuracy and
speed with which the NIH Action Plan for Muscular Dystrophy was
researched, compiled, written, and approved. The NIH is making
significant investments to understand muscular dystrophy research needs
and has made excellent choices in recruiting program staff with the
ability to understand the extremely complex nature of all of the
muscular dystrophies.
Between fiscal year 2006 and 2007, NIH overall funding for muscular
dystrophy increased from $39,913,000 to $47,179,000, an 18 percent
increase. Figures from the NIH Appropriations History for Muscular
Dystrophy show that from the inception of the MD CARE Act 2001 funding
has doubled for muscular dystrophy.
Between fiscal year 2006 and 2007, NIH funding for
facioscapulohumeral muscular dystrophy (FSHD) increased from $1,732,655
to $4,108,555. In fiscal 2007, FSHD was 8.7 percent of the total
muscular dystrophy funding ($4.109 million/$47.179 million).

NATIONAL INSTITUTES OF HEALTH (NIH) APPROPRIATIONS HISTORY \1\
[Dollars in millions]
----------------------------------------------------------------------------------------------------------------
FSHD percent of
Fiscal year NIH overall MD research FSHD research MD
----------------------------------------------------------------------------------------------------------------
2000........................................... $17,821 $12.6 $0.4 3.0
2001........................................... 20,458 21.0 0.5 2.0
2002........................................... 23,296 27.6 1.3 5.0
2003........................................... 27,067 39.1 1.5 4.0
2004........................................... 27,887 38.7 2.2 6.0
2005........................................... 28,494 39.5 2.0 5.0
2006........................................... 28,587 39.913 1.7 4.0
2007........................................... 28,899 47,179 4.109 8.7
2008........................................... \2\ 29,230 \2\ 47,221 .............. ...............
----------------------------------------------------------------------------------------------------------------
\1\ Source.--NIH/OD Budget Office & NIH OCPL.
\2\ Estimated.

Facioscapulohumeral muscular dystrophy (FSHD) is the second most
prevalent adult muscular dystrophy after myotonic muscular dystrophy
(DM). We are very concerned about the wide disparity in funding between
the most widely recognized pediatric Duchenne muscular dystrophy (DMD)
and the entire group of the other eight types of MD. DMD has exclusive
funding from the Centers for Disease Control (CDC), Department of
Defense (DOD) and more than half (>50 percent) of NIH funding for MD.
This is astounding considering facioscapulohumeral muscular dystrophy
(FSHD) and myotonic dystrophy (DM) are each individually more prevalent
than DMD and each received 5 percent and 15 percent respectively of
total muscular dystrophy dollars as last reported by the NIH to
Congress!
Between 2006 and 2007, the NINDS became the lead institute for
funding in MD. Historically, the NIAMS in its mission statement has
been primarily responsible for and has been the lead institute for
muscle disease research. The Center for Scientific Review (CSR) routes
the majority of MD grant applications to NIAMS based on its mission. In
fiscal year 2007, NIAMS was the second largest contributor, followed by
the National Institute of Child Health and Human Development (NICHD) as
third, and the National Heart, Lung and Blood Institute (NHLBI) as
fourth. It should be troubling that muscular dystrophy spending has
declined significantly in several key institutes that could bring
tremendous impact to these devastating diseases.

NATIONAL INSTITUTES OF HEALTH (NIH) MUSCULAR DYSTROPHY FUNDING BY INSTITUTE--FISCAL YEAR 2007 \1\
[Dollars in millions]
----------------------------------------------------------------------------------------------------------------
Fiscal year
Participating ICs ------------------------------ Percent
2006 actual 2007 actual change
----------------------------------------------------------------------------------------------------------------
NINDS.............................................................. $12.697 $19.347 +51.6
NIAMS.............................................................. 16.576 17.734 +7
NICHD.............................................................. 4.818 4.591 -4.7
NHLBI.............................................................. 2.270 2.458 +8.3
NIA................................................................ 1.865 1.882 +0.9
NCRR............................................................... 0.770 0.679 -11.8
NCI................................................................ 0.495 0.426 -13.9
NHGRI.............................................................. 0.391 0.161 -58.8
NINR............................................................... 0.031 ............. .............
NEI, NIMH, FIC, OD................................................. ............. ............. .............
----------------------------------------------------------------------------------------------------------------
\1\ Source.--NIH/OD budget office.

NINDS.--In fiscal year 2007, NINDS spent $2,612,994 on FSHD and
$19,247,940 on MD. 47 projects, including Wellstone CRC components for
a total of $19,247,940 were funded. FSHD was 13.6 percent of NINDS MD
funding. The NINDS funded, for FSHD, three research grants, one
research fellowship, one research contract, one-quarter of a Wellstone
MDCRC center and one-half of a Translational Research Center research
grant for a total of six projects. NINDS funding for FSHD went up by
$1,191,398 or 83.8 percent. Total funding for MD by NINDS increased
over the year by $6,551,266 or 51.6 percent.
NIAMS.--In fiscl year 2007, NIAMS spent $1,495,561 on FSHD and
$17,734,317 on MD. This comprises 89 projects, including Wellstone
MDCRC components for a total of $17,734,317. FSHD was 8.4 percent of
NIAMS MD funding. The NIAMS funded, for FSHD, four research grants, one
research contract, 2 percent of a Translational Research Center for a
total of six projects. NIAMS funding for FSHD went up by $1,184,502 or
381 percent. Total funding for MD by NIAMS increased over the year by
$1,158,000 or 7 percent.
NICHD.--In fiscal year 2007, NICHD spent $0 on FSHD and of
$4,591,826 on all MD. 17 projects, including three Wellstone MDCRC
centers were funded. FSHD was zero percent of NICHD MD. Total funding
for FSHD by NICHD was $0. Total funding for MD by NICHD decreased over
the previous year by $225,756 or 4.7 percent.
NHLBI.--In fiscal year 2007, NHLBI spent $0 on FSHD and $2.458
million on MD. FSHD was zero percent of NHLBI fiscal year 2007 MD
funding. Total funding for FSHD by NHLBI remained at zero dollars. This
should be of grave concern as respiratory insufficiency and failure is
becoming increasingly recognized as a cause of poor quality of life
and, even more significantly, of death in FSHD.
The MD CARE Act 2001 mandates the Director to intensify efforts and
research in the muscular dystrophies, including FSHD, across the entire
NIH. It should be very concerning that only two of the institutes at
the NIH are funding FSHD. NICHD, NHLBI, NHGRI, NCI and NCRR are all
aware of the high impact each could have on FSHD. FSHD is certainly
still far behind when we look at the breadth of research coverage NIH-
wide.
Centers of Excellence.--Wellstone MD Cooperative Research Centers
(MDCRCs, U54s) are mandated by the MD CARE Act 2001 and, to date, have
not been established to cover each of the nine types of MD. There is an
inequitable distribution of research in each of the muscular
dystrophies across the Wellstone centers with almost two-thirds of the
entire center network, four out of six centers, focusing on DMD. FSHD
has about a five (5) percent share of the entire current Wellstone
centers portfolio. Today, the NIH has six Wellstone centers, but they
have almost no presence for FSHD, and nothing at all for related
dystrophies such as Emery-Dreifuss Muscular Dystrophy (EDMD) and
Oculopharyngeal muscular dystrophy (OPMD).
I am here once again to remind you that FSH muscular dystrophy
(FSHD) is taking its toll on your citizens. FSHD illustrates the
disparity in funding across the muscular dystrophies and recalcitrance
in growth over 20 years despite consistent pressure from appropriations
language and Appropriations Committee questions, and an authorization
from Congress mandating research on FSHD.
We implore the Congress to resume the doubling of NIH funding every
5 years. Under the current budget, research funding percentiles have
reached the top tenth percentile and higher. With funding pay lines at
10 percent, plus or minus a few percent, excellent research proposals
are going unfunded. We request that the Appropriations Committee act
now to restore the lifeline to biomedical research in the United States
to avoid an accelerated loss of researchers and clinicians.
We request that $80 million to $125 million annually be
appropriated for muscular dystrophy. We all know that for a disease
area to grow--grant applications must be received and grant
applications must be funded. The majority of growth in any disease area
at the NIH is obtained through unsolicited applications. In the widest
sense, in order for NIH to increase the MD portfolio across the
missions of applicable and participating institutes more funding is
needed for the NIH. We request the Appropriations Committee help
increase the number of unsolicited FSHD and MD grants awarded by
lowering the pay lines with an increase in the overall pool of funds
NIH works with.
We have learned from experience that the FSH Society as a volunteer
health agency and the patients it represents serves a vital function in
developing research. We develop an area of research to a point where
the NIH can then push the research to much greater heights. The FSH
Society has invested over $2 million in the last 9 years into nearly 70
post-doctoral and research fellowships and grants. In the last 2 years,
our understanding of how FSHD mechanistically works has dramatically
increased. This, in turn, allows researchers to fill the gaps between
mechanistic knowledge to translational research to clinical trials.
This knowledge has dramatically increased thanks to the efforts of
patients, the FSH Society, researchers, clinicians and the NIH.
Investments from small non-profits like the FSH Society have allowed
the global funding and initiation of novel challenging and promising
research in FSHD. Two of the three research projects funded by NINDS
are past FSH Society research fellows (5-R01-NS048859-04 M. Ehrlich, 5-
R01-NS047584-05 R.G. Tupler). Three of the four research projects
funded by NIAMS are past FSH Society research fellows (1-R01-AR-52027-
01-A2 Y.W. Chen, 1-R01-AR-56129-01-A2 R.G. Tupler, 1-R21-AR-55876-01 S.
van der Maarel) and the fourth project came from FSH Society patient
networking activities (1-R01-AR-55877-01 Public Law Jones).
We request that the Director of the NIH be more proactive in
facilitating both unsolicited and solicited grant applications on
facioscapulohumeral muscular dystrophy, facioscapulohumeral disease,
FSH muscular dystrophy and FSHD from new and existing investigators and
through new and existing mechanisms, special initiatives, training
grants and workshops--to bring knowledge of FSHD to the next level.
Thanks to your efforts and the efforts of your Committee, Mr.
Chairman and Mr. Harkin, the Congress, the NIH and the FSH Society are
all working to promote progress in facioscapulohumeral muscular
dystrophy research. We are pleased to see FSHD funding from the NIH and
Federal research agencies gaining traction. FSHD funding is just now
beginning to grow. Our successes are just beginning and your continued
support is crucial.
We ask you to fund biomedical research, fund the National
Institutes of Health (NIH), fund muscular dystrophy (MD) research, and
fund facioscapulohumeral muscular dystrophy (FSHD) research.
Mr. Chairman, thank you for this opportunity to testify before your
committee.
______

Prepared Statement of Families USA

Families USA wishes to thank the subcommittee for the opportunity
to submit this written testimony concerning federal funding for the
National Institutes of Health (NIH) and the Centers for Disease Control
and Prevention (CDC). This statement highlights the importance of the
medical research that is conducted and supported by NIH and the CDC in
addressing global health problems, especially infectious disease
pandemics.
Since 1982, Families USA has advocated for U.S. policies that
increase access to affordable health care for all Americans.
Recognizing that international health affects domestic health, and that
research conducted by the United States can provide tremendous help to
people around the world, Families USA launched its Global Health
Initiative 2 years ago. The Global Health Initiative advocates for
increased U.S. investment in research and development of medical
interventions for infectious diseases that disproportionately affect
low-income countries.
The drug industry has little interest in investing in diseases that
predominantly affect low-income countries because there is little
potential for profit. It is in our nation's self-interest to fill the
current funding gap and provide the needed resources so that our
agencies and institutes can continue to conduct necessary global health
research.

RESEARCH: A CRUCIAL TOOL FOR IMPROVING GLOBAL HEALTH

Turning the tide against complicated, deadly infectious disease
pandemics such as HIV/AIDS, tuberculosis (TB), and malaria requires a
comprehensive, multifaceted strategy. Research needs to be the
cornerstone of any such strategy. Research is the only way to identify
and develop new medical interventions to diagnose, prevent, and treat
disease. To make progress in United States and global health, research
is absolutely crucial.
Research that yields new and improved medical interventions will
also increase the effectiveness of U.S. global aid programs that are
already in place, such as the President's Emergency Plan for AIDS
Relief (PEPFAR), the President's Malaria Initiative (PMI), and the
Global Fund to Fight AIDS, TB, and Malaria.
The National Institute of Allergy and Infectious Diseases (NIAID)
has taken a leadership role in conducting the bulk of the global health
research and development activities that are undertaken at NIH. Robust
funding for NIAID is essential for addressing infectious disease crises
around the globe and in the United States.
The Fogarty International Center (``Fogarty''), which is also part
of NIH, plays a crucial role in addressing global health challenges by
facilitating collaboration between United States and international
researchers through its international training and global health
research capacity building programs. Fogarty's programs facilitate the
development of medical discoveries worldwide.
The CDC's global health programs are also vitally important to
protecting Americans and people around the world from disease. Cuts to
the CDC's budget undermine both the United States and the global public
health infrastructures that are crucial to rapidly responding to new
disease outbreaks and combating existing global pandemics. Yet, some of
the CDC's global health programs have been flat-funded for years, and
other global health programs can no longer carry out their critical
mission due to limited funds.

GLOBAL HEALTH RESEARCH MATTERS TO OUR NATIONAL INTERESTS

Economic Interests.--Many universities across the United States
receive global health research funding from NIH and the CDC. This
influx of cash spurs local economies. Moreover, in regions around the
globe where disease prevalence is greatest, workforces suffer from
substantially reduced productivity, and economic growth is hindered. In
today's globalized economy, our economic health is intertwined with the
economies of other nations.
Health Interests.--The SARS outbreak that happened in Canada a few
years ago, and the 2007 incident involving an American traveling
internationally with multi-drug resistant TB, make it all too clear
that infectious diseases abroad pose a substantial threat to the United
States. We desperately need new tools to combat these and other deadly
diseases.
National Security and Political Interests.--In areas of the world
where the infectious disease burden is greatest, the social structure
of entire countries has been unraveling, paving the way for political
unrest and undermining democracy in many regions of the world. To
reverse this trend, we must give NIH and the CDC the resources they
need to make progress in global health.
Diplomatic Interests.--We have a national diplomatic interest in
funding global health research: As the wealthiest country on earth, we
have the means to advance health and alleviate human suffering. Using
our wealth to improve global health improves America's image and is an
effective foreign policy tool.
Humanitarian Interests.--As a Nation of plenty and the leader of
the free world, it is unconscionable for us to turn a blind eye to the
plight of the vast majority of humankind.
The number of people impacted by infectious diseases is staggering:
--One billion people are affected by, and many millions are left
permanently disabled by, neglected tropical diseases that you
may never have heard of--infectious diseases that are found
mainly in low-income tropical and subtropical regions. Examples
include Chagas disease and leishmaniasis.
--There are about 350 to 500 million cases of malaria each year, and
malaria kills 18 percent of children under age 5 in sub-Saharan
Africa.
--Currently, 33 million people around the world have HIV/AIDS.
--Tuberculosis (TB) infects people worldwide: One-third of the planet
has latent TB and is at risk of developing active TB. The risk
of developing active TB is heightened in those with HIV/AIDS
and those suffering from malnutrition.

HOW MUCH FUNDING IS NEEDED?

NIH--Total Budget
NIH needs a 6.7 percent increase above its fiscal year 2008 funding
level across all institutes, centers, and offices, for a total budget
of $31.1 billion in fiscal year 2009.
Families USA's Global Health Initiative recommends a 6.7 percent
increase in funding for fiscal year 2009 across all of NIH. This
includes a 3.7 percent increase to keep pace with the projected rise in
inflation from 2008 to 2009, plus an additional 3.0 percent to begin
correcting for the historic underfunding of NIH (in recent years, the
NIH budget has not kept pace with inflation).

NIH--Global Health Programs
NIAID needs an increase of $83.1 million above its fiscal year 2008
funding level, on top of the overall NIH increase of 6.7 percent, for a
total budget of $5 billion in fiscal year 2009.
We determined the necessary funding level for NIAID by examining
worldwide research needs for HIV/AIDS vaccines and microbicides,
malaria, TB, and neglected tropical diseases. These research needs are
based on the assessments of numerous organizations, for example, the
Global Network for NTD Control, AVAC, IAVI, UNAIDS, the Alliance for
Microbicide Development, Roll Back Malaria, WHO, and the Stop TB
Partnership.
To fully address research needs in these areas (while maintaining
the agency's current share of the world's public-sector spending),
NIAID would need $582 million more than it is currently budgeted (on
top of the overall NIH adjustment of 6.7 percent). To implement this
increase in a fiscally responsible time frame, our calculations spread
the $582 million increase over 7 years, yielding $83.1 million per
year.
The Fogarty International Center needs an increase of $2.4 million
above its fiscal year 2008 funding level, on top of the overall NIH
increase of 6.7 percent, for a total budget of $74 million in fiscal
year 2009.
To make progress in combating diseases such as HIV/AIDS, TB, and
malaria, Fogarty would need a 25 percent increase above its 2008
funding level. As with the recommended adjustment for NIAID, the
adjustment for Fogarty would also be spread over 7 years. In 2009, this
would amount to an additional $2.4 million for Fogarty (on top of the
overall NIH adjustment of 6.7 percent), or $74.6 million in total
funding.

The CDC's Global Health Programs
The CDC's global health programs need a $35.5 million increase
above their fiscal year 2008 funding levels, for a total budget of
$337.9 million in fiscal year 2009 (this excludes funds for pandemic
flu preparedness).
As with NIH, CDC funding has been shortchanged for many years,
especially funding for its global health programs. This places the
Nation's and the World's health at risk.
Our assessment of gaps in the CDC's current funding and our
evaluation of its prior funding indicate that CDC's global health
programs need $142 million more than they have right now, separate and
apart from any funding for pandemic flu preparedness. However, we
understand that the realities of the current fiscal environment will
likely necessitate implementation of any funding increases over
multiple years. Therefore, we recommend that funding for the CDC's
global health programs be increased by a total of $142 million over 4
years, updated annually thereafter for inflation. This amounts to
$337.9 million in fiscal year 2009, which is a $35.5 million increase
above fiscal year 2008 funding.

CALL FOR ACTION

People across the United States and throughout the world are
looking to NIH and the CDC for new medical advances that will lead to a
healthier tomorrow. Shortchanging NIH and the CDC places everyone's
health at risk. We urge the Subcommittee to fund NIH and the CDC at the
levels specified above.
______

Prepared Statement of the Friends of CDC

Chairman Harkin, ranking member Specter, and members of the
subcommittee, thank you for the opportunity to submit testimony on
behalf of the Friends of CDC to discuss infrastructure funding for the
Centers for Disease Control and Prevention (CDC) in the fiscal year
2009 budget. My name is Oz Nelson, and I am the Retired Chair and CEO
of United Parcel Service and the Co-Chair of the Friends of CDC.
I would like to begin my testimony by offering sincere thanks on
behalf of the Friends of CDC for the efforts of the subcommittee in
securing funding for CDC Buildings and Facilities in the fiscal year
2008 Labor, Health and Human Services Appropriations bill. We are
extremely grateful for your commitment to this important effort.
Before I tell you more about the condition of the CDC and the need
for continued Congressional action, I would like to tell you why I am
involved in this effort and about the Friends of CDC. Following a 1999
CEO tour of several of CDC's totally inadequate labs and office
facilities, the Corporate Friends of CDC was organized for the sole
purpose of highlighting the need for infrastructure funding for the
Centers for Disease Control at its two Atlanta-based campuses. This
group currently includes AT&T, United Parcel Service, GE Power Systems,
The Home Depot, Inc., Cox Enterprises, Inc, Southern Company,
Theragenics Corporation, and HCA. It is a voluntary, civic minded group
deeply concerned that the facilities at the nation's premier public
health institution could be allowed to deteriorate to the point they
were when this endeavor began.
Since their formation in 1999, the Friends have advocated with
officials at CDC, HHS, OMB and Congress for full and timely funding of
the CDC Buildings and Facilities Master Plan. During the last 8 years
Congress has appropriated $1.4 billion towards the Master Plan,
resulting in an historic and far-reaching construction project that has
changed the face of CDC. But the job is not yet complete. The total
cost of the Master Plan is $1.7 billion and to that end we are
requesting $250 million in the fiscal year 2009 budget for improving
CDC buildings and facilities.
As you know, the range of CDC's assignments has grown tremendously
over the past decade. The CDC is on the front lines of defense
protecting the health of every American because of its ability to
identify, classify, and recommend courses of action in dealing with a
potential biological, radiological, or chemical attack in the United
States or around the world. This being said, several of the CDC
facilities still do not offer a sufficient level of security or an
adequate support structure to CDC's scientists.
Since CDC began executing the Master Plan, a series of threats to
the nation's health and security have emerged, ranging from terrorist
attacks, to the rapid spread of the West Nile Virus, to the emergence
of SARS, Avian Flu, Marburg Virus, and monkeypox. These threats
continue to challenge CDC's capacity and plainly illustrate the need
for additional funding to accelerate the CDC's Master Plan and enable
the CDC to be better prepared and capable of responding to the range of
public emergencies which the United States is likely to face in the
coming years.
In addition to infectious diseases, CDC works on preventing chronic
diseases such as cardiovascular disease, cancer, and diabetes. Other
areas of CDC's activities include maximizing the immunization rates of
children and adults; preventing a wide range of environmental diseases
by preventing exposure to toxic chemicals; conducting examinations and
surveys to produce data on the health of Americans; preventing and
controlling injuries; protecting employees from workplace injuries and
diseases; and the training of public health and other health care
workers throughout the country.
Thanks to your support, CDC is making substantial progress in
implementing the 10-Year Master Plan for buildings and facilities for
the Atlanta-based portion of the Centers for Disease Control and
Prevention. In addition, progress has been made on both the Edward R.
Roybal Campus near Emory University and the Chamblee Campus in
construction of new labs and support buildings, upgrades to physical
security, and upgrades to vital campus infrastructure such as
electrical power and water.
The remaining funds needed by CDC to complete the Master Plan would
be devoted to the following projects. CDC has entered into the planning
phase for the construction of Buildings 24, 107, and 108. These
Research Support Facilities will play an important role in allowing the
CDC to accomplish its goal of providing adequate facilities for its
workforce. As a result of these capital improvements, the agency will
be better equipped to achieve its overarching goal of protecting the
nation's public health.
Building 24, which will be located on the CDC's Roybal Campus, will
be occupied by non-laboratory staff from the CDC's Coordinating Center
for Infectious Diseases (CCID). With a cost of approximately $134
million, of which $63 million has been appropriated to date, this
facility will primarily consist of office space for 1,100 occupants.
Additionally, this facility will replace existing non-laboratory space
currently being utilized by CCID staff on the Roybal Campus.
Buildings 107 and 108 will be located on the CDC's Chamblee Campus
and be occupied by staff from the Coordinating Center for Health
Promotion (CoCHP), which includes the National Center for Birth Defects
and Developmental Disabilities (NCBDDD), the National Center for
Chronic Disease Prevention and Health Promotion (NCCDPHP), and the
Office of Genomics and Disease Prevention. With a similar design to the
Environmental Health Facility (Building 106), these research support
facilities will cost approximately $254 million to complete ($127
million for each). No money has been appropriated to date for these
buildings. When completed, the buildings will also house approximately
2,200 occupants, all of which are currently located in leased office
space. This is critically important in allowing the agency to
successfully consolidate many of its staff members from leased space
into secure, CDC-owned facilities.
The investment in these facilities is critical to assuring that CDC
scientists are physically and logistically equipped to protect our
businesses and our families from the growing threats of terrorism and
emerging diseases over the coming decades. The Friends of CDC
respectfully request $250 million in fiscal year 2009 to insure that
the CDC is better prepared to face its current and prospective public
health challenges.
Thank you for the opportunity to submit testimony on behalf of the
Friends of CDC.
______

Prepared Statement of Friends of the National Institute on Aging

Chairman Harkin and members of the subcommittee, thank you for the
opportunity to submit testimony on the important role that the National
Institute on Aging (NIA) plays among the National Institutes of Health
(NIH) and the urgent need for increased appropriations to advance
research supported by the NIA.
The Friends of the NIA is a coalition of 50 academic, patient-
centered and not-for-profit organizations that conduct, fund or
advocate for scientific endeavors to improve the health and quality of
life for Americans as we age. We support the continuation and expansion
of NIA research activities and seek to raise awareness about important
scientific progress in the area of aging research currently guided by
the Institute. Our testimony highlights recent advances resulting from
NIA funding, as well as negative consequences that could occur if
Congress does not provide sufficient appropriations for NIA research
and training activities in fiscal year 2009.
As you know, the NIA leads national research efforts to better
understand the nature of aging and to maintain the health and
independence of Americans as they grow older. NIA's mission is to
support and conduct a range of genetic, biological, clinical, social
and economic research related to aging processes and diseases of the
aged. One area where this mission is clearly reflected is in the
research efforts of NIA investigators aimed at extending an
individual's years of healthy life. Projects focused on achieving this
goal include studies assessing the beneficial age-related effects of
reducing caloric intake in laboratory animals, as well as the testing
of compounds in these subjects with the potential to extend the years
of disease-free life. Both approaches have produced promising results
in a number of animal species, and may lead to insights into
potentially beneficial human applications. By capitalizing on such
successful studies and the identification of genes that influence
longevity, investigators hope to delay the onset of disease and
disability associated with human aging.
Many challenges will arise as Americans reach retirement age in
increasing numbers. Currently, there are approximately 36 million
Americans aged 65 and older. That group is expected to double in size
within the next 25 years, at which time at least 20 percent of the U.S.
population will be older than 65. Of particular concern is the dramatic
growth that is anticipated among those age 85 and over. By 2050, 19.4
million Americans will be over the age of 85. If rapid discoveries are
not made now to reduce the prevalence of debilitating age-related
disorders, the health-related costs associated with caring for the
oldest and sickest Americans will place an unmanageable burden on
patients, their families, and our fragile health care system. However,
with proper investment further advances in the area of longevity
science could yield tremendous health and economic benefits by
shortening the period during which humans suffer from costly,
debilitating diseases.
The single largest driver of healthcare costs in the United States
is Alzheimer's disease. The NIA has been a leader in basic,
translational, and clinical research focused on facilitating early
diagnosis of Alzheimer's disease and developing more effective
therapies and strategies for Alzheimer's prevention. NIA-supported
research in this area remains focused on efforts to speed delivery of
novel Alzheimer's therapies to patients. In fiscal year 2009 the NIA
will continue its pre-clinical drug development program and pilot
trials initiative, along with a cooperative agreement to conduct new
clinical trials through the Alzheimer's Disease Cooperative Study. In
addition, the NIA will advance work under the Alzheimer's Disease
Neuroimaging Initiative (ADNI), which has provided necessary
neuroimaging tools to view disease processes and assist researchers in
developing and monitoring emerging treatments. NIA will also continue
the Alzheimer's Disease Genetics Initiative (GI), which was established
to identify the genes that contribute to the most common form of AD,
late-onset. The need for progress in these areas becomes ever more
important as the extraordinary costs to patients and families continue
to grow.
Medicare spending on beneficiaries with Alzheimer's climbs
steadily, reaching more than $189 billion over the next decade.
Adequate sustained resources must be provided in order for these
programs to one day provide relief to the 5.2 million patients and
their families currently living with Alzheimer's. If the onset of
Alzheimer's could be delayed by 5 years, the projected population that
is expected to suffer from the disease could be cut in half. If
researchers are successful in achieving a modest delay in the rate of
aging, health and economic benefits would be achieved that are greater
than what would result from the elimination of cancer or heart disease
alone. To achieve these powerful results, meaningful investments in
aging research must be made now. Scientists are poised to make
breakthroughs in the prevention and treatment of a host of age-
associated diseases and conditions, but without sufficient funding for
aging research, Americans are unlikely to see these breakthroughs occur
during their lifetime.
Healthy longevity and Alzheimer's disease are just two of the NIA's
important focus areas. Other promising research efforts supported by
the NIA include projects to discover new Parkinson's and neurological
disease susceptibility genes; to study the environmental risk-factors
and genetic predisposition to obesity; and to uncover how the interplay
between neurons and inflammatory immune cells can be harnessed to
improve stroke outcomes. All of these conditions are prevalent among
older adults and take a tremendous toll in health costs and lost
quality of life.
Other work of critical importance conducted and funded by the NIA
is in the area of behavioral and social science research. The NIA's
behavioral and social science research programs have been instrumental
in providing essential data on the socioeconomic and demographic
implications of an aging population. These data are used by
policymakers at all levels of government, including, at the Federal
level, the Social Security Administration, Centers for Medicare and
Medicaid Services, and Department of State, to inform the development
and evaluation of public policy. Much of the productivity of the BSR
program is attributable to researchers supported via its network of
research centers, such as the Demography of Aging Centers, Roybal
Centers for Applied Gerontology and Resource Centers for Minority Aging
Research. The BSR program also supports large, accessible datasets
utilized by scientists worldwide. One of the largest datasets, the
Health and Retirement Study (HRS), is the leading source of combined
data on health and financial circumstances of Americans over age 50 and
a valuable resource to follow and predict trends for an aging America.
NIA also partners with the U.S. Census Bureau on joint demographic
studies of the elderly population and the Federal Forum on Aging, which
is composed of 13 Federal departments and agencies, and collects,
provides, and analyzes aging-related data. Data from these surveys are
particularly important for understanding the budgetary impact of
population aging. They also help Congress in budgetary considerations
of population aging as it deliberates potential changes to public
programs such as Social Security, Medicare, and Medicaid. With
consistent funding, these surveys can continue to be seminal sources of
information on the health and socioeconomic status of older Americans.
In the area of geriatrics and clinical gerontology, the NIA's work
this year will be centered on reducing disease and disability among
older people. This is critically important because the United States
spends approximately $26 billion per year on Medicare beneficiaries who
lose the ability to remain fully independent. As individuals age, their
risk for suffering from many diseases and disabling conditions
increases dramatically. NIA's Geriatrics and Clinical Gerontology (GCG)
Program examines age-related physical changes and their relationship to
health outcomes, the maintenance of health and the development of
disease, and specific age-related risk factors for disease. In fiscal
year 2009 the NIA plans to initiate studies to determine why the
elderly develop dangerous blood clots in their veins and arteries; to
continue research increasing understanding of the unidentifiable causes
of anemia in the elderly; and to conduct studies in nutrition, weight
loss and exercise to measure their role in preventing age-related
diseases like heart disease and certain cancers.
Since the end of the NIH's budget doubling in 2003, funding has
been on a downward trajectory and many of the areas of research
mentioned earlier have been impacted despite prioritization by the NIA.
In the 5 years through 2008, a series of nominal increases and cuts has
amounted to flat funding for NIH, and as a result it has lost
approximately 11 percent in purchasing power due to inflation alone.
For the NIA specifically, flat budgets are to blame for a 12.9 percent
reduction in constant dollars for the Institute between fiscal year
2003 and fiscal year 2009. To operate in this environment the NIA and
other institutes have not been able to fund increasing numbers of high-
quality research grants each year. Those that are funded are subject to
cost containment policies that decrease the funding level of new grants
and reduce the funding level of existing grants. The NIA in particular
must implement an 18 percent cut on average in recommended funding for
individual competing grants.
NIH is the primary funder of biomedical research in this country.
Approximately 85 percent of its budget goes to support investigators at
universities and medical centers across the United States. But
declining budgets are impeding progress. Because of a scarcity of
resources, the overall success rate for NIH research grant applications
has fallen from 32 percent to 24 percent since 1999. This means that
only one in four research proposals can be funded by the NIH and fewer
of them are funded on the first submission. The effect of this has been
reluctance on behalf of new investigators to submit truly ground-
breaking research proposals for consideration. While we recognize that
there is enormous competition for Congressional appropriations each
year, we believe that a continued slowdown in funding for the NIH will
have a devastating impact on the rate of basic discovery and the
development of interventions that could have the significant public
health benefits for our aging population.
The Friends of the NIA supports a 6.6 percent increase in funding
to $31.1 billion for the NIH in fiscal year 2009. Such an increase
would prevent the estimated 3.6 percent loss that the NIH will
experience this year without an inflationary increase. This increase
would begin to restore the NIH's ability to pursue new basic,
translational, and clinical research opportunities. The $31.1 billion
would also allow the National Institute on Aging specifically to
increase support of new and existing investigator initiated research
projects and better facilitate the acceleration of discoveries to
prevent, treat, and potentially cure a wide range debilitating age-
related diseases and conditions among our growing population of older
Americans.
Mr. Chairman, the Friends of the NIA thanks you for this
opportunity to outline the challenges and opportunities that lie ahead
as you consider the fiscal year 2009 appropriations for the NIH and we
would be happy to furnish additional information upon request.
______

Prepared Statement of Friends of the National Institute for Dental and
Craniofacial Research

Chairman Harkin and distinguished Members of the Committee, the
members of the Friends of the National Institute of Dental and
Craniofacial Research (FNIDCR), a leading coalition of individuals,
corporations, and institutions that understands the importance of
dental, oral, and craniofacial health to our society, are requesting
that fiscal year 2009 funding for the National Institute of Dental and
Craniofacial Research (NIDCR) be appropriated at our recommended level
of $438 million, which is 1.5 percent of the total budget for the
National Institutes of Health (NIH).
As it stands, the president's recommended level of fiscal year 2009
funding for NIDCR, $390,535,000, is woefully inadequate and it is $6
million below fiscal year 2008 funding that Congress passed last year.
Moreover, it represents only 1.33 percent of NIH's total budget. In
fact, as NIH's budget doubled between 1998 and 2003, NIDCR's total
budget decreased 13 percent. Since 2003, NIDCR funding has essentially
flat-lined.\1\
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\1\ American Dental Education Association.
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NIDCR: A RENOWN LEADER IN RESEARCH

For 60 years, NIDCR has been the leading sponsor of research and
research training in biomedical and behavioral sciences. Its mission is
to ``improve oral, dental and craniofacial health through research,
research training, and the dissemination of health information.''
NIDCR meets its mission by:
--Performing and supporting basic and clinical research;
--Conducting and funding research training and career development
programs to ensure an adequate number of talented, well-
prepared and diverse investigators is sustained;
--Coordinating and assisting relevant research and research-related
activities among all sectors of the research community; and
--Promoting the timely transfer of knowledge gained from research and
its implications to health professionals, researchers, and
policy-makers; and on the overall well-being of our society.

NIDCR RESEARCH BENEFITS SOCIETY

Proper federal funding of NIDCR will transform the future of
medical and dental practice to the benefit of our society and ease the
burden on our nation's healthcare system. Examples of where NIDCR
research has benefited, and will continue to benefit, society are:
Tooth Decay.--Fluorides and sealants have cut the rate of the
number of American adults, aged 45 and older, who are without teeth by
more than half since 1950s.
Oral Cancer Detection.--Twenty-two Americans die each day from oral
cancer, and 39,000 people develop it every year. Survival rates are
among the lowest of all the major cancers. It is difficult to detect
and hard to predict its outcome.
NIDCR-supported research has yielded initial success with
developing a fully-automated, all-in-one test device that can alert
dentists if oral cancer is in the early stages of development in a
patient. The portable device, which probes cells brushed from the mouth
for a common sign of oral cancer, yields results in under ten minutes.
Currently, a painful tissue biopsy is the method used to detect oral
cancer and the results take days; not minutes.
Salivary Diagnostics.--The promising prospect of using saliva as a
diagnostic fluid to identify an emerging disease is an example of the
type of cutting-edge research being conducted and supported by NIDCR.
Salivary Diagnostics possesses advantages over traditional blood
testing, including the absence of needles and the ability to be
administered on-the-spot.
Genome-wide Association Studies.--NIDCR is supporting the first
genome-wide association studies on cleft lip/cleft palate and dental
carries. This is being done in collaboration between epidemiologists,
geneticists, informatics experts, and environmental scientists. The
studies offer significant potential for understanding the molecular and
genetic basis of cleft lip/cleft palate and dental carries with the
goal of improving the ability to predict and manage them.
Moreover, NIDCR research benefits millions of Americans with:
--Periodontal Disease
--Chronic Dry Mouth
--Chronic Facial and Oral Pain, and
--Bone and Cartilage Regeneration
All of these diseases and ailments lead to two million
hospitalizations and 100,000 deaths annually at a cost of $100 billion
to our nation's healthcare system.
Oral Health Disparities Centers
Finally, through community-based disparities research funded by
NIDCR, a difference is being made in meeting the health needs of our
nation's low-income, underserved, and high-risk populations. Sadly,
this need was made apparent with the tragic passing of 12-year-old
Deamonte Driver who died from a tooth infection in 2007.
NIDCR is committed to eventually eliminating oral health
disparities by planning to fund Centers to Reduce Oral Health
Disparities this summer. The Centers will continue to perform
interventions to determine the best methods for preventing oral disease
and applying research findings in communities with health disparities.

RECOMMENDATION

Simply stated, proper funding of the National Institute for Dental
and Craniofacial Research is essential to the overall health and well-
being of our fellow Americans. Moreover, we firmly contend that medical
discoveries and advances from NIDCR funding lead to improvements in
dental practices and change the scope of public health policies across
the nation. Whether it is detecting a clear link between bacteria in
the mouth and heart disease--or discovering how saliva can be used as
an indicator of how healthy a human being is--we all benefit when we
make oral health research a priority.
Therefore, based upon the merits of the research conducted by
NIDCR, we respectfully request the Subcommittee to fund NIDCR at $438
million, or 1.5 percent of the total NIH budget, so that it can realize
the full potential of its worthy mission.
Thank you for the opportunity to present our written testimony
before the Subcommittee.
______

Prepared Statement of Patricia S. Harrison

On behalf of our country's public broadcasting system, I want to
thank Chairman Tom Harkin and ranking member Arlen Specter for allowing
me to submit this written testimony in support of the Corporation for
Public Broadcasting's (CPB) fiscal year 2009 appropriations requests.
Mr. Chairman and members of the subcommittee, it is no secret that
the media landscape is changing at a rapid pace. Public broadcasting,
or what we now like to call ``public service media,'' was established
40 years ago as a change agent, focused on providing ``programs and
services which inform, enlighten and enrich the public'' as an antidote
to what former Federal Communications Commission Chairman Newton Minow
referred to as the ``vast wasteland.'' Today, the wasteland remains in
a much larger and ever-evolving scale, but the good news is so does our
mission. What remains evergreen, in the midst of this rapid change, is
public service media's authenticity and our connection to our audience,
a connection that has been there from the beginning. That is why our
traditional broadcast platforms continue to serve millions of people
each week with the high quality content we are known for. At the same
time, we have a long track record of supporting innovative efforts to
use digital media in even more creative ways to respond to community
needs. This new landscape can also facilitate a renewed partnership
with the American people, reaching diverse audiences and learning from
them.
Public media's commitment to education is historic and continues
today preparing children from low income families to succeed in school.
Ninety seven percent of the nation's public television stations are
utilizing new media applications to deliver educational services to
their communities. Through Ready to Learn, children are being prepared
to learn before they begin kindergarten. This year, Reading is
Fundamental (RIF) honored Iowa Public Television and KUED-TV (Salt
Lake) as two of 25 Programs of Excellence. Each year RIF honors
projects for successfully partnering with outside organizations to
advance children's literacy in their communities. The 25 were selected
from approximately 3,500 RIF programs nationwide.
We are preparing children to learn and measuring the results. In
communities throughout the country, stations like Maryland Public
Television are providing summer reading camps where children experience
that learning can be fun. And educating does not stop at primary
school. Vegas PBS Virtual High School launched in 1996, by request of
the local Clark County School District (CCSD), to help lower their 9
percent dropout rate. In the first year 238 students enrolled in the
four ``most failed'' high school courses. As of 2007 the program
expanded to include a catalog of 60 courses offered via VHS, DVD, on
demand broadband and live interactive Internet offerings. In the last 3
years, between 5,000 and 7,000 were served. In 2005, a parallel program
offering online Advanced Placement courses was joined with the Vegas
PBS offerings to create the CCSD Virtual High School. Last year all but
one of the 38 comprehensive 4 year high schools in Clark County (the
nation's 5th largest school district) had between one and 22 graduates
who received their degree as a result of taking two or more Virtual
High School classes. Further, our community focused stations are
dealing with other issues that impact at a local level, whether the
issue is healthcare or help for children with disabilities. Because of
a KETC-TV (St. Louis) health initiative, viewers learned about the
danger of high blood pressure and the need to get regular screening. A
Head Start childcare provider credits this program and the outreach
beyond the broadcast with saving her life.
Many stations are taking a page from Ideastream, a joint venture
between public television and radio in Cleveland, Ohio, which is
leading the way in a coalition of concerned organizations and corporate
partners to reverse the decline in science, technology, engineering and
math (STEM) achievement of students in the state. Another STEM
Collaborative--including Maryland Public Television, Alabama Public
Television, Arkansas Public Television, and Kentucky Public
Television--is working to build a library of digital education material
for middle school math students that will be useful to middle school
students in those states and across the country.
As President and CEO of CPB, I have seen firsthand how public
service media is filling an important need on behalf of America's
teachers, children, families and communities. We serve as a vital
community connector and in some states, a lifeline on issues impacting
our families, our children's education and safety, our health and
environment. At a time of great economic uncertainty, we are there
helping beyond the broadcast with tangible help. In this important
election year, stations are serving as a reliable and trusted source
for information. Throughout 2008, for example, Wisconsin Public
Television and Wisconsin Public Radio have joined to provide that
state's citizens with programming related to local and national
elections. In addition, a one-stop voter information website,
wisconsinvote.org, launched in January 2008, is the centerpiece of
Wisconsin public broadcasting's efforts.
In our ongoing conversation with the American people we are asking
them how we can serve them even better as our society continues to deal
with new challenges. And they are responding through the first ever
public awareness initiative, telling us how public media serves as
their ``source'' throughout the year for news beyond a soundbite, for
opportunities for their children and for help in times of national
emergency.
Station facilities are increasingly serving as community centers,
where partnerships with other organizations are fostered to help youth
or seniors, or address an issue impacting the community. Further,
thousands of hours of community service programming, including millions
of dollars of investment in education are directly employed at a local
level to make a difference. Public media, on air and online, through
content that matters, is a national treasure--a treasure that has a
real and lasting impact on American families.
Accordingly, with the support of the public broadcasting system,
CPB has begun to invest in public broadcasting stations' essential--but
not widely known--work in communities across America to increase
recognition of public broadcasting as a valuable resource that informs,
enlightens and enriches public life. In fiscal year 2008, through this
public awareness initiative, we are working with stations to develop
models of community engagement that will increase the public's
understanding of the role of public broadcasting stations in their
communities.
However, if public media is going to continue to deliver on its
promise to serve the American people, to treat them as citizens and not
just as consumers, and to provide a safe place where children can
learn, a continued and increased federal investment in this national
treasure is essential. American public service media is a collection of
over 1,150 locally-owned television and radio stations that deliver
free, universally available, non-commercial, high quality programming
and services to communities throughout the country. Each week, more
than 80 million Americans view public television and more than 27
million listen to public radio for programming that covers public
affairs, science, history and the arts. Many others access our rich
array of web sites, classroom media, activity guides for parents and
caregivers, job training services and GED programs. From a federal
investment currently amounting to less than $2.00 per American a year,
public broadcasting leverages $2.3 billion in programming and services.

REQUEST FOR APPROPRIATIONS

CPB requests a $483 million advance appropriation for fiscal year
2011. This amount represents a 15 percent increase over the $420
million advance appropriation provided for fiscal year 2010, and comes
after several years of flat funding, which has left public broadcasters
struggling to serve their communities' existing needs, while
simultaneously providing additional services made possible by the
digital revolution. CPB has received advance appropriations since the
mid-1970's, and we believe this practice remains essential. It ensures
the continued existence of a political firewall, protecting public
broadcasting's autonomy in programming decisions, and it affords public
broadcasters--who raise approximately 84 percent of their revenues from
non-federal sources--a key measure of certainty in their business
planning.
CPB has been concerned about public broadcasting's uncertain
financial picture, caused by both funding shortfalls and the demands of
the digital transition. To better understand these challenges, CPB
engaged Booz Allen Hamilton to conduct a financial assessment of public
broadcasting, looking at current conditions and forecasting financial
trends for the fiscal year 2011-2015 timeframe. The assessment
projected current trends into the future, and more importantly
considered the additional costs of the new services public broadcasters
expect to deliver to their communities.
The assessment team examined types and levels of services that
public broadcasters will seek to provide to their communities. These
included providing additional educational content, increased use of
both television and radio multicasting to deliver additional content,
increased use of emerging media platforms to reach new users and
increased use of news/talk format by radio stations. Booz Allen found
that, assuming a current level of service and no increase in CPB's
appropriation, the public broadcasting system would see a deficit
beginning in fiscal year 2011. This projection does not take into
account the opportunity for public broadcasters to further benefit
their communities through increased services made possible by digital
technology. Booz Allen estimated that these plans would require
significant increases in both CPB's appropriation and other funding
sources. Together, these total approximately $3 billion in fiscal year
2011. Although the Public Broadcasting Act of 1967 envisions a greater
level of federal support of public broadcasting (up to 40 percent), in
recent years the federal contribution through the CPB appropriation has
amounted to about 16 percent of public broadcasting revenues. On this
basis, we are requesting that the CPB appropriation rise to $483
million in fiscal year 2011.
As you know, CPB's general appropriation is allocated according to
a statutory formula that ensures funds go directly to the people and
organizations that create and deliver highly valued programs and
services. The Public Broadcasting Act of 1967 directs that over 70
percent of CPB funds go directly to public television and radio
stations as community service grants. The Act also directs 6 percent of
our appropriation to system support activities such as station
interconnection operating grants, music copyright fees, Independent
Television Services (ITVS) administration and the Minority Consortia.
In addition to our base appropriation, CPB is requesting $40
million in fiscal year 2009 for the continuing conversion to digital
technology. While 95 percent of television transmitters and 75 percent
of radio transmitters have been converted, this is only a part of the
challenge. CPB research from Fall 2007 indicates that public television
stations will require up to $90 million in additional funding to
complete their primary stations' basic transition to digital and they
will also need equipment to participate in the Department of Homeland
Security's Digital Emergency Alert System project. In addition, rural
television and radio stations will begin converting over 1,600
translators, which relay the primary station signal to remote areas.
Both television and radio stations will also need funding for equipment
that will allow them to provide programming on multiple streams to take
advantage of their digital capacity. Additionally, CPB seeks to further
develop the American Archive project, which would digitize, store and
make available a treasure trove of public broadcasting content for
educational, cultural and entertainment uses.
CPB also requests $27 million as the second installment of an
anticipated three-year $73 million funding request for the replacement
of public radio's interconnection system. CPB is statutorily obligated
to provide for the interconnection needs of public broadcasters.
Finally, CPB is requesting $32 million in fiscal year 2009 for
Ready To Learn (RTL), the goal of which is to raise the reading levels
of children ages 2-8 who live in high-poverty environments. Ready To
Learn is a partnership between CPB, the Public Broadcasting Service
(PBS) and the U.S. Department of Education. We are working in
collaboration with WGBH (Boston), Sesame Workshop and Out of the Blue
Enterprises, leading reading and media researchers and 20 local public
broadcasting stations. In 2008, we will launch the new multi-platform
children's series: Martha Speaks and in January 2009, The New Electric
Company. We also anticipate delivering a new pre-K reading curriculum,
expanding the reach of summer reading camp for kids and launching a new
website called PBS KIDS Island, readytolearnreading.org, that will
allow parents and caregivers a way to see what their children are
learning by offering kids a structured path for reading game play. We
will continue to test the effectiveness of RTL resources in 20 target
markets that have been selected from throughout the country based on
low National Assessment of Educational Progress reading scores,
significant populations of children in poverty, and local stations that
are proven leaders in delivering quality educational services to their
community.
Thank you again for your consideration of these requests. The
continued federal investment in this system will ensure that Americans,
whatever their age, ethnicity or economic status, will have access to
quality television and radio services for themselves and their
families. Your investment will ensure that our country's public service
media will continue to educate, entertain, and inform, and move us to
do more for our communities and country, inspiring us to be citizens,
not just consumers.
______

Prepared Statement of the Heart Rhythm Society

The Heart Rhythm Society (HRS) thanks you and the Subcommittee on
Labor, Health and Human Services and Education for your past and
continued support of the National Institute of Health, and specifically
the National Heart, Lung and Blood Institute (NHLBI).
The Heart Rhythm Society, founded in 1979 to address the scarcity
of information about the diagnosis and treatment of cardiac
arrhythmias, is the international leader in science, education and
advocacy for cardiac arrhythmia professionals and patients, and the
primary information resource on heart rhythm disorders. The Heart
Rhythm Society serves as an advocate for millions of American citizens
from all 50 States, since arrhythmias are the leading cause of heart-
disease related deaths. Other, less lethal forms of arrhythmias are
even more prevalent, account for 14 percent of all hospitalizations of
Medicare beneficiaries.\1\ Our mission is to improve the care of
patients by promoting research, education and optimal health care
policies and standards. We are the preeminent professional group,
representing more than 4,200 specialists in cardiac pacing and
electrophysiology.
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\1\ Heart Rhythm Foundation, Arrhythmia Key Facts, 2004 http://
www.heartrhythmfoundation.org/facts/arrhythmia.asp.
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The Heart Rhythm Society recommends the subcommittee renew its
commitment to supporting biomedical research in the United States and
recommends for fiscal year 2009 Congress provide NIH with $31.1
billion, a funding increase of 6.5 percent. This translates into an
increase of $3.1 billion for the National Heart, Lung, and Blood
Institute. This increase will enable NIH and NHLBI to sustain the level
of research that leads to research breakthroughs and improved health
outcomes. In particular, the Heart Rhythm Society recommends Congress
support research into abnormal rhythms of the heart.
HRS appreciates the actions of Congress to double the budget of the
NIH in recent years. The doubling has directly promoted innovations
that have improved treatments and cures for a myriad of medical
problems facing our nation. Medical research is a long-term process and
in order to continue to meet the evolving challenges of improving human
health we must not let our commitment wane. Furthermore, NIH research
fuels innovation that generates economic growth and preserves our
nation's role as a world leader in the biomedical and biotech
industries. Healthier citizens are the key to robust economic growth
and greater productivity. Economists estimate that improvements in
health from 1970 to 2000 were worth $95 trillion. During the same time
period, the United States invested $200 billion in the NIH. If only 10
percent of the overall health savings resulted from NIH-funded
research, our investment in medical research has provided a 50-fold
return to the economy.\2\
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\2\ Murphy, KM and Topel, RH, The Value of Health and Longevity,
National Bureau of Economic Research Working Paper Series, Working
Paper 11405, June 2005.
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Unfortunately, since the end of the doubling in 2003, funding for
NIH has failed to keep pace with biomedical inflation. As a result 13
percent of NIH's purchasing power has been lost. Because of this NIH
has been unable to fully fund existing multi-year grants, thus stalling
life-saving discoveries. If these vacillations in funding continue,
future generations of researchers will become discouraged from pursuing
a career in basic science and laboratories' resources could be strained
to the point of forcing lay-offs and even closure.

RESEARCH ACCOMPLISHMENTS

In the field of cardiac arrhythmias, NIH-funded research has
advanced our ability to treat atrial fibrillation and thus prevent the
devastating complications of stroke. Atrial fibrillation is found in
about 2.2 million Americans and increases the risk for stroke about 5-
fold. About 15-20 percent of strokes occur in people with atrial
fibrillation. Stroke is a leading cause of serious, long-term
disability in the United States and people who have strokes caused by
AF have been reported as 2-3 times more likely to be bedridden compared
to those who have strokes from other causes. Each year about 700,000
people experience a new or recurrent stroke and in 2002 stroke
accounted for more than 1 of every 15 deaths in the United States.
Ablation therapy however is providing a cure for individuals whose
rapid heart rates had previously incapacitated them, giving them a new
lease on life.\3\
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\3\ American Stroke Association and American Heart Association,
Heart Disease and Stroke Statistics--2005 Update, 2005 http://
www.americanheart.org/downloadable/heart/
1105390918119HDSStats2005Update.pdf.
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Important advances have also been made in identifying patients with
heart failure and those who have suffered a heart attack and are at
risk for sudden death. The development, through initial NIH-sponsored
research, and implantation of sophisticated internal cardioverter
defibrillators (ICD's) in such patients has saved the lives of hundreds
of thousands and provides peace of mind for families everywhere,
including that of Vice-President Cheney's. A new generation of
pacemakers and ICDs is restoring the beat of the heart as we grow
older, permitting us to lead more normal and productive lives, reducing
the burden on our families, communities and the healthcare system.
Arrhythmias and sudden death affect all age groups and are not solely
diseases of the elderly.
Research advances in molecular genetics have provided us the root
basis for life-threatening abnormal rhythms of the heart associated
with of wide range of inherited syndromes including long and short QT,
Brugada syndromes, and hypertrophic cardiomyopathies. Inroads have been
achieved in the identification of cardiac arrhythmias as a cause of
Sudden Infant Death Syndrome (SIDS) and the genetic basis for a new
clinical entity associated with sudden death of young adults was
uncovered earlier this year. This knowledge has provided guidance to
physicians for better detection and treatment of these sudden death
syndromes reducing mortality and disability of infants, children and
young adults. Individuals who survive an instance of sudden death often
remain in vegetative states, resulting in a devastating burden on their
families and an enormous economic burden on society. These advances
have translated into sizeable savings to the health care system in the
United States. Researchers are also developing a noninvasive imaging
modality for cardiac arrhythmias. Despite the fact that more than
325,000 Americans die every year from heart rhythm disorders, a
noninvasive imaging approach to diagnosis and guided therapy of
arrhythmias, the equivalent of CT or MRI, has previously not been
available.
The NIH-funded Public Access Defibrillation (PAD) Trial was also
able to determine that trained community volunteers increase survival
for victims of cardiac arrest. It had already been known that
defibrillation, utilizing an automated external defibrillator (AED), by
trained public safety and emergency medical services personnel is a
highly effective live-saving treatment for cardiac arrest. A NIH-funded
trial however was able to conclude that placing AED's in public places
and training lay persons to use them can prevent additional deaths and
disabilities.\4\
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\4\ National Heart Lung and Blood Institute, NIH, Public Access
Defibrillation by Trained Community Volunteers Increases Survival for
Victims of Cardiac Arrest, November 2003 http://www.nhlbi.nih.gov/new/
press/03-11-11.htm.
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Without NIH support, these life-saving findings may have taken a
decade to unravel. The highly focused approach utilizing basic and
clinical expertise, funded through Federal programs made these advances
a reality in a much shorter time-period.

BUDGET JUSTIFICATION

These impressive strides notwithstanding, cardiac arrhythmias
continue to plague our society and take the lives of loved ones at all
ages, nearly one every minute of every day, as well as straining an
already burdened health system. Sudden Cardiac Arrest is a leading
cause of death in the United States, claiming an estimated 325,000
lives every year, or one life every 2 minutes.\5\ The burden of
morbidity and mortality due to cardiac arrhythmias is predicted to grow
dramatically as the baby boomers age. Atrial fibrillation strikes 3-5
percent of people over the age of 65,\6\ Apresenting a skyrocketing
economic burden to our society in the form of healthcare treatment and
delivery. Cardiac diseases of all forms increase with advancing age,
ultimately leading to the development of arrhythmias. Effective drug
therapy for the management of atrial fibrillation is one of the
greatest unmet needs in our society today and additional research is
needed to address this problem. NIH research provides the basis for the
medical advances that hold the key to lowering health care costs.
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\5\ Heart Rhythm Foundation, The Facts on Sudden Cardiac Arrest,
2004 http://www.heartrhythmfoundation.org/its_about_time/pdf/
provider_fact_sheet.pdf.
\6\ Heart Rhythm Society, Atrial Fibrillation & Flutter, 2005http:/
/www.hrspatients.org/patients/heart_disorders/atrial_fibrillation/
default.asp.
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The above progress we have witnessed in recent years will provide
treatments for this illness, only if the resources continue to be
available to the academic scientific and medical community. However,
the budgets appropriated by Congress to the NIH in the past 3 years
were far below the level of scientific inflation. These vacillations in
funding cycles threaten the continuity of the research and the momentum
that has been gained over the years. While HRS recognizes that Congress
must balance other priorities, sustaining multi-year growth for the
biomedical research enterprise is critical. A central objective of the
doubling of the NIH budget was to accelerate solutions to human disease
and disability. NIH is now engaging in the next generation of
biomedical research to translate basic research and clinical evidence
into new cures. Our ability to bring together uniquely qualified and
devoted investigators and collaborators both at the basic science level
and in the clinical arena is a vital key to our to this success.
Funding models however show that a threshold exists, below which NIH
will not be able to maintain its current scope and number of grants,
let alone expand its programs to address new concerns and emerging
opportunities. Furthermore, the United States is in danger of losing
its leadership role in science and technology. The United States faces
growing competition from other nations, such as China and India, which
are working to invest more of their GDP's into building state-of-the
art research institutes and universities to foster innovation and
compete directly for the world's top students and researchers.\7\
---------------------------------------------------------------------------
\7\ Task Force on the Future of American Innovation, The Knowledge
Economy: Is the United States Losing it's Competitive Edge?, February
16, 2005.
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It is for this reason that we are asking for your support to
increase NIH appropriations by 6.5 percent for a fiscal year 2009. The
Heart Rhythm Society recommends Congress specifically acknowledge the
need for cardiac arrhythmia research to prevent sudden cardiac arrest
and other life threatening conditions such as sudden infant death
syndrome, definitive therapeutic approaches for atrial fibrillation and
the prevention of stroke, and other genetic arrhythmia conditions.
Thank you very much for your consideration of our request.
If you have any questions or need additional information, please
contact Nevena Minor, Manager of Legislative Affairs at the Heart
Rhythm Society ([email protected] or 202-464-3431).
Thank you again for the opportunity to submit testimony.
______

Prepared Statement of the Hepatitis B Foundation

This testimony is being provided to highlight the urgent need to
address the public health challenges of chronic hepatitis B by
strengthening programs at the Centers for Disease Control and
Prevention, and the National Institutes of Health.
Mr. Chairman and members of the subcommittee, thank you for giving
the Hepatitis B Foundation (HBF) the opportunity to testify as the
subcommittee begins to consider funding priorities for fiscal year
2009.
My name is Dr. Timothy Block, and I am the volunteer President and
Co-founder of the Hepatitis B Foundation (HBF) and its research
institute. I am also a professor at Drexel University College of
Medicine. My wife, Joan, and I and another couple, Paul and Janine
Witte, from Pennsylvania started the Hepatitis B Foundation more than
18 years ago because someone very close to us was affected.
Today, the HBF is still the only national nonprofit organization
solely dedicated to finding a cure and improving the lives of those
affected by hepatitis B worldwide through research, education and
patient advocacy. Our scientists focus on drug discovery for hepatitis
B and liver cancer, and early detection markers for liver cancer;
outreach staff manages a comprehensive website which receives almost 1
million visitors each year and a national patient conference; and
public health professionals implement research-based initiatives to
advance our mission.
The hepatitis B virus (HBV) is the world's major cause of liver
cancer--and while other cancers are declining in rate, liver cancer is
the fastest growing in incidence in the United States. The numbers of
people chronically infected with HBV will knock your socks off: there
are 400 million people worldwide. Without intervention, as many as 100
million will die from an awful liver disease, most notably liver
cancer. In the United States, up to 2 million Americans have been
chronically infected and more than 5,000 people die each year from
complications due to HBV. Additionally, although all ethnic groups are
affected it disproportionately affects Asians and Africans. That is,
nearly 1 in 10 Asian Americans are chronically infected with hepatitis
B.
But, the news is not all grim. There have been tremendous advances
in research and in the control and treatment of hepatitis B over the
past 30 years. There is a good vaccine to prevent infection; although,
there is now a question as to how long lasting the protection is, if
given in infancy. Unfortunately, for the 400 million people already
infected worldwide, the vaccine is too late.
For those already infected, there are now several medications that
can be taken to control viral replication and prevent disease
progression to end-stage liver disease and/or liver cancer; thereby,
reducing mortality and the need for liver transplantation. However,
most cases of cirrhosis or liver cancer are diagnosed in the late
stages, and current methods to treat liver cancer are in the dark ages,
literally, and early diagnosis of liver disease is also primitive. HBV
screening as part of liver cancer prevention and detection is thought
to be one of the best hopes for effective management.
Thus, we were getting close to solutions, but lack of sustained
support for public health measures and scientific research is
threatening to allow the problems to come roaring back. Clearly, the
Nation is faced with a major public health challenge that cannot be
ignored. If we don't act with urgency, more and more people will
suffer. Let me share just a few examples to dramatize the risks to us
all.
The recent crisis in a Nevada clinic, where as many as 40,000
people were placed at risk for infection with HBV, HCV and HIV, is a
problem that the Centers for Disease Control and Prevention (CDC)
thinks might just be the ``tip of the iceberg''. The Nevada incident
highlights critical deficiencies with national surveillance of chronic
hepatitis B and C infections that are needed to rapidly identify
problems such as the one that occurred in the Nevada clinic.
The frightening increase in the incidence of liver cancer, while
most other cancer rates are on the decline, represents another example
of shortcomings in our system. In the United States, 20,000 babies are
born to mothers infected with hepatitis B each year, and as many as
1,200 newborns will be chronically infected with the hepatitis B virus.
More needs to be done to prevent new infections.
But, fortunately, there is a good and proven way to avoid these
tragedies. The vaccine and medications were the result of successful
innovation and public/private partnerships between industry, academia
and the government. People concerned about this problem continue to
turn to Congress and the CDC and the National Institutes of Health
(NIH). The CDC and NIH have formulated plans and have the ability to,
if not solve the problem, get it entirely under control.
Mr. Chairman, may I now turn attention to requests regarding two
Federal agencies that are critical in our effort to help people
concerned with hepatitis B: the CDC and the NIH.

THE CENTERS FOR DISEASE CONTROL, DIVISION OF VIRAL HEPATITIS

We believe a strong, well equipped CDC is our best hope to manage
the public health problem of hepatitis B. The DVH has had ``flat
funding'' for the past 5 years, despite the urgency and growth of this
problem. DVH is included in the National Center for HIV/AIDS, Viral
Hepatitis, STD, and TB Prevention at the CDC, and is responsible for
the prevention and control of viral hepatitis. Currently, DVH focuses
primarily on acute hepatitis A, B and C. While that's been very
successful in decreasing new infections, little has been done about
chronic hepatitis B and C, which impacts more than 6 million Americans
and if left untreated, often leads to fatal liver failure or liver
cancer.
The HBF calls for a ``zero tolerance'' policy against new HBV
infections, particularly among newborns, and against leaving infected
pregnant women uneducated and unprotected. All pregnant women who test
positive for hepatitis B should be referred to appropriate follow-up
care and treatment. With a safe vaccine and six approved therapies for
hepatitis B, no woman or child should be left behind. HBF also urges an
expansion of cooperative agreements to test and validate evidence-based
interventions focused on the mother-child transmission issue, and the
prevention and management of HBV in high-risk ethnic communities.
The HBF supports increased resources to build the capacity for the
Division of Viral Hepatitis to improve public health interventions by
building a robust national active surveillance of chronic HBV and HCV,
strengthening State and local viral hepatitis prevention networks, and
educating the community and providers to raise awareness about the
importance of early detection and intervention of chronic hepatitis.
Strengthening chronic hepatitis B education, testing, and referral to
care programs will make an enormous difference in decreasing new
infections and decreasing the mortality and morbidity associated with
chronic viral hepatitis.
Both Drs. Kevin Fenton and John Ward, of the CDC, have shown great
leadership and spoken eloquently on the state of hepatitis B in the
United States. Dr. Ward, for example, has observed that ``Hepatitis B
is the deadliest disease that can be prevented through infant
vaccination.'' Dr. Ward also recognizes the need for recommendations to
ensure HBV-infected pregnant women are educated and referred to care,
rather than treated merely as vessels of disease. More investment in
DVH, however, is required to bolster their programs to address the
problems of chronic viral hepatitis.
To meet these needs, we request $50 million in fiscal year 2009 for
the DVH. This would allow for a comprehensive, aggressive approach.
However, an additional annual increase of at least $5 million,
beginning in fiscal year 2009, is considered the minimum increase
needed to sustain existing program and allow for minor reinforcements,
in particular, to fund an Institute of Medicine Study to characterize
and document the true burden of chronic viral hepatitis disease in the
United States, which is urgently needed.
Overall, the HBF joins with the CDC Coalition, a nonpartisan
coalition of more than 100 groups, in supporting $7.4 billion for the
Centers for Disease Control and Prevention in fiscal year 2009. The CDC
programs are crucial to the health of all Americans and key to
maintaining a strong public health infrastructure to protect us from
threats to our health. At a time when the CDC is faced with
unprecedented challenges and responsibilities ranging from chronic
disease prevention, eliminating health disparities, bioterrorism
preparedness, to combating the obesity epidemic the administration has
cut the CDC's budget by $412 million. We urge the committee to restore
this cut and fund the CDC at $7.4 billion.

THE NATIONAL INSITUTES OF HEALTH

We depend upon the U.S. NIH to search for new interventions to
treat people with hepatitis B and liver cancer.
In fiscal year 2008, NIH is expected to spend approximately $42
million on hepatitis B funding overall. Although it is unseemly to
compare one disease with another, since for anyone affected it is the
disease that afflicts them that is the most important, it may be useful
to know that the NIH currently spends $2.9B on HIV and billions on
biodefense. Current estimates predict that HBV research funding will be
flat or decline for fiscal year 2009.
Please help correct this situation. There are good plans that show
how an additional $40 million per year can make transformational
beneficial advances for HBV research. If this is not possible in the
current funding climate, we urge that the level of funding for HBV
research be increased by at least 6.5 percent in fiscal year 2009.
Mr. Chairman, I would like to take this opportunity to commend the
leadership of NIH, and especially the leadership of the National
Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), the
National Cancer Institute, and the National Institute of Allergy and
Infectious Diseases for their continued interest in liver disease
research. They have performed admirably with the limited resources they
are provided; however, more is needed.
The NIH published a 10 year Liver Disease Research Action Plan in
2004, and to date, NIDDK has succeeded in several important areas such
as funding a network of HBV Clinical Research Centers and hosting the
first HBV Consensus Conference focused on identifying best treatment
practices for chronic hepatitis B infections. The growing number of
treatment options is encouraging and suggests a strong rationale for
conducting a consensus conference to provide state-of-the-art treatment
guidelines for the practicing physician community.
Mr. Chairman, HBF joins the Ad Hoc Group for Medical Research
Funding, a coalition of some 300 patient and voluntary health groups,
medical and scientific societies, academic research organizations and
industry, in recommending $31.2 billion (6.5 percent increase) for the
National Institutes of Health in fiscal year 2009. The fiscal year 2009
Administration budget request for NIH is flat compared to fiscal year
2008 funding levels, which is due to the effects of biomedical
inflation, and translates to a cut. In the five years through 2008, NIH
has lost approximately 11 percent in purchasing power due to inflation.
Therefore, if the President's fiscal year 2009 request becomes law, NIH
will have lost one-seventh of its purchasing power due to inflation.

SUMMARY AND CONCLUSION

While the HBF recognizes the demands on our nation's resources, we
believe the ever-increasing health threats and expanding scientific
opportunities continue to justify higher funding levels for the CDC's
Division of Viral Hepatitis and the National Institutes of Health than
proposed by the administration.
Significant progress has been made in developing better treatments
and cures for the diseases that affect humankind due to your leadership
and the leadership of your colleagues on this subcommittee. Significant
progress has also similarly been made in the fight against hepatitis B.
In conclusion, we specifically request the following funding for
fiscal year 2009 programs:
--In fiscal year 2009, restore the CDC budget to $7.4 billion, with a
$50 million increase to the Division of Viral Hepatitis (or at
least an increase of $5 million) to strengthen the public
health response to chronic viral hepatitis; and
--In fiscal year 2009, provide a 6.5 percent increase for the NIH
bringing the total funding level to $31.2 billion, including a
$40 million increase per year for hepatitis B research.
The Hepatitis B Foundation appreciates the opportunity to provide
testimony to you on behalf of our constituents and yours.
______

Prepared Statement of the Hepatitis C Appropriations Partnership

The Hepatitis C Appropriations Partnership, whose members advocate
for increased Federal support for hepatitis C prevention, testing,
education, research, and treatment, respectfully submits testimony for
the record regarding Federal funding for Federal adult hepatitis
programs in the fiscal year 2009 Labor, HHS and Education
Appropriations legislation. HCAP appreciates the Committee's past
support for these important public health programs.
As you craft the fiscal year 2009 Labor, HHS and Education
Appropriations legislation, we urge you to consider the following
critical funding needs to appropriately address the HCV epidemic:
--Include $50 million for the Centers for Disease Control and
Prevention's (CDC) Division of Viral Hepatitis (DVH);
--Continue $20 million for hepatitis B vaccination for adults through
the Section 317 Vaccine Program;
--Continue funding commitment for Community Health Centers;
--Increase funding for the Ryan White Program to support additional
case management, provider education and the coverage of HCV
drug therapies; and
--Increase funding for the National Institutes of Health to support
their Action Plan for Liver Disease Research.
Approximately 6.25 million Americans are infected with the
hepatitis C virus (HCV) and hepatitis B virus (HBV). Chronic viral
hepatitis is now one of the leading killers of Americans living with
HIV/AIDS. In addition, chronic viral hepatitis is the leading cause of
liver cancer, now among the top 10 killers of Americans over the age of
25 years. Overall, the death rate for HCV-related deaths in the United
States is expected to triple by 2019.
It is critical that Americans know whether they are hepatitis C-
infected in order to mitigate disease burden and to prevent
transmission. These include simple steps like abstaining from alcohol
use, exercising and maintaining a healthy diet. There are effective
pharmaceutical treatment options available as well.

PREVENTION

HCAP requests a minimum increase of $32.4 million in fiscal year
2009 for the Centers for Disease Control and Prevention's (CDC)
Division of Viral Hepatitis (DVH) to enable State and local health
departments to provide basic core public health services. Of this
increase, we request a doubling of funding for State adult viral
hepatitis prevention coordinators from $5 million to $10 million. DVH
currently receives $17.6 million to address hepatitis C, of which
States receive an average award of $90,000 to fund a coordinator. The
coordinator position receives precious little above personnel costs,
leaving little to no money for the provision of public health services
such as education programs for the public and health professionals,
hepatitis counseling, testing, and referral, or hepatitis A and B
vaccine for adults. In addition, there are no funds for surveillance of
chronic viral hepatitis, which would allow States to better target
their limited resources. Due to lack of funding, CDC treats hepatitis
outbreaks as sentinel events rather than systematically addressing
hepatitis B and C epidemics with over 6 million Americans infected.
Addressing one outbreak at a time is neither cost-effective nor is it
prevention. Simply put, in the absence of an HCV vaccine the government
can invest in prevention now or wait until public systems are
overwhelmed by the costs of chronic liver disease, including liver
transplantation.
The greatest remaining challenge for hepatitis A and B prevention
is the vaccination of high-risk adults. High-risk adults account for
more than 75 percent of all new cases of hepatitis B infection each
year and annually result in an estimated $658 million in medical costs
and lost wages. In fiscal year 2007, CDC allowed States to use $20
million of 317 Vaccine funds to vaccinate high risk adults for
hepatitis B. States are integrating vaccination into service programs
for persons with risk factors for infection (e.g., STD clinics, HIV
counseling and testing sites, correctional facilities and drug
treatment clinics). By targeting high-risk adults, including those with
hepatitis C, for vaccination, the gap between children and adults who
have not benefited from routine childhood immunization programs can be
bridged. HCAP requests a continuation of $20 million in fiscal year
2009 for hepatitis B vaccination.

TREATMENT

Access to available treatments and treatment support services are
critical to combat co-infection morbidity. While there are no dedicated
funding streams for medical management and treatment of hepatitis C,
low-income patients can and do seek services at Community Health
Centers (CHCs). HCAP supports your continued commitment to increasing
resources for CHCs.
Many low-income individuals co-infected with HCV and HIV can obtain
services through the Ryan White Programs and because of that, HCAP
urges you to provide increased Ryan White resources. Only half the
State's AIDS Drug Assistance Programs (ADAP) are able to provide HCV
and HIV treatments to co-infected clients. Increased resources are also
needed to improve provider education on HCV medical management and
treatment, to cover additional case management for patients undergoing
treatment and to allow more States to add HCV therapies and HCV viral
load tests to their ADAP formularies.

RESEARCH

Finally, research is needed to increase understanding of the
pathogenesis of hepatitis C, improve HCV treatments that are currently
difficult to tolerate, develop clinical strategies to slow the
progression of liver disease among persons living with HCV, and develop
a vaccine to prevent HCV infection. The Liver Disease Branch, located
within the National Institute of Diabetes and Digestive and Kidney
Diseases (NIDDK) at the National Institutes of Health (NIH), has
developed an Action Plan for Liver Disease Research. HCAP requests full
funding for NIH to support the recommendations and action steps
outlined in this Action Plan for Liver Disease Research.
A strong public health response is needed to meet the challenges of
this infectious disease impacting over four million Americans. We
welcome the opportunity to work with you and your staff on this
important issue.
As you craft the fiscal year 2009 Labor-HHS appropriations bill, we
ask that you consider all of these critical funding needs. It is
essential that the United States continue to demonstrate its commitment
to fighting the ongoing domestic and global HIV/AIDS, viral hepatitis,
and STD epidemics. The National Alliance of State and Territorial AIDS
Directors thank the chairman, ranking member and members of the
subcommittee, for their thoughtful consideration of our
recommendations. Should you have any questions or comments, feel free
to contact Laura Hanen, Coalition Director, Hepatitis C Appropriations
Partnership, (202) 434-8091 or [email protected]. Thank you very much.
______

Prepared Statement of the Hepatitis Foundation International

SUMMARY OF RECOMMENDATIONS FOR FISCAL YEAR 2009

A funding level of $7.4 billion for the Centers for Disease Control
and Prevention, an increase of $1.28 billion over fiscal year 2008.
A funding level of $50 million for the Center for Disease Control
and Prevention's Division of Viral Hepatitis, an increase of $32
million over fiscal year 2008.
A funding increase of at least 6.5 percent over fiscal year 2008
for the National Institutes of Health.
Urge the Centers for Disease Control and Prevention, the National
Institutes of Health, and the Substance Abuse and Mental Health
Services Administration to work with voluntary health organizations to
promote liver wellness, expand health education, and improve primary
prevention of unhealthy lifestyle behaviors.
Currently, five types of the hepatitis virus have been identified,
ranging from type A to type E. All of these types cause acute, or
short-term, viral hepatitis. The Hepatitis B, C, and D viruses can also
cause chronic hepatitis, in which the infection is prolonged, sometimes
lifelong. While treatment options are available for many patients,
individuals with chronic viral hepatitis B and C represent a
significant number of the patients that require a liver transplant.
Treatments presently have limited success and there is no vaccine
available for hepatitis C, the most prevalent of these diseases.

HEPATITIS A

The hepatitis A virus (HAV) is contracted through fecal/oral
contact (i.e. fecal contamination of food, water, and diaper changing
tables if not cleaned properly), and sexual contact. In addition,
eating raw or partially cooked shellfish contaminated with HAV can
spread the virus. Children with HAV usually have no symptoms; however,
adults may become violently ill, suddenly experiencing jaundice,
fatigue, nausea, vomiting, abdominal pain, dark urine/light stool, and
fever. While there is no treatment for HAV, recovery tends to occur
spontaneously over a 3 to 6 month period. About 1 in 1,000 with HAV
suffers from a sudden and severe infection that can require a liver
transplant. A highly effective vaccine can prevent HAV and is
recommended for all children and individuals who have chronic liver
disease or clotting factor disorders, in addition to those who travel
or work in developing countries.

HEPATITIS B

Hepatitis B (HBV) claims an estimated 5,000 lives every year in the
United States, even though therapies exist that slow the progression of
liver damage. Vaccines are available to prevent hepatitis B, but their
effectiveness is limited. This disease is spread through contact with
the blood and body fluids of an infected individual and from an HBV
infected mother to child at birth. Unfortunately, due to both a lack in
funding to vaccinate adults and the absence of an integrated preventive
education strategy, transmission of hepatitis B continues nearly
unabated. Additionally, there are significant disparities in the
occurrence of chronic HBV-infections. For Example, Asian Americans
represent four percent of the population; however, they account for
more than half of the 1.3 million chronic hepatitis B cases in the
United States. Current treatments do not cure hepatitis B, but
appropriate treatment can help to reduce the progression to liver
cancer and liver failure. Yet, many are not treated. Preventive
education and universal vaccination are the best defenses against
hepatitis B.

HEPATITIS C

Infection rates for hepatitis C (HCV) are at epidemic proportions.
Unfortunately, many individuals are not aware of their infection until
many years after they are infected. This creates a dangerous situation,
as individuals who are infected unknowingly spread the disease. The
Centers for Disease Control and Prevention (CDC) estimates that there
are over 4 million Americans who have been infected with hepatitis C,
of which over 2.7 million remain chronically infected, with 8,000-
10,000 deaths each year. Additionally, the death rate is expected to
triple by 2010 unless additional steps are taken to improve outreach
and education on the prevention of hepatitis C and scientists identify
more effective treatments and cures. As there is no vaccine for HCV,
prevention, education, and treatment of those who are infected serve as
the most effective approach in halting the spread of this disease.

PREVENTION IS THE KEY

The absence of information pertaining to the liver and hepatitis in
education programs over the years has been a major factor in the spread
of viral hepatitis through unknowing participation in liver damaging
activities. Adults and children need to understand the importance of
the liver and how viruses and drugs can damage its ability to keep them
alive and healthy. Many who are currently infected are unaware of the
behavioral risks which expose them to viral infections, and ultimately,
liver damage.
Knowledge is the key to prevention. Preventive education is
essential to motivate individuals to protect themselves and avoid
behaviors that can cause life-threatening diseases. Primary prevention
that encourages individuals to adopt healthy lifestyle behaviors must
begin in elementary schools when children are receptive to learning
about their bodies. In addition to educating individuals at a critical
age, schools provide access to one-fifth of the American population.
Individuals need to be motivated to assess their own risk
behaviors, to seek testing, to accept vaccination, to avoid spreading
their disease to others, and to understand the importance of
participating in their own health care and disease management. The CDC
needs to support education programs to train teachers and healthcare
providers in effective communication techniques, and to evaluate the
impact preventive education has on reducing the incidence of hepatitis
and substance abuse.
For fiscal year 2009, HFI recommends that the Centers for Disease
Control and Prevention (CDC), The National Institutes of Health (NIH),
and the Substance Abuse and Mental Health Services Administration
(SAMHSA) be urged to work with voluntary health organizations to
promote liver wellness, education, and prevention of viral hepatitis,
sexually transmitted diseases, and substance abuse.
For fiscal year 2009, HFI recommends that the CDC, particularly the
Division of Adolescent and School Health (DASH), work with voluntary
health organizations to promote liver wellness with increased attention
toward childhood education and prevention, particularly through
partnerships between school districts and non-governmental
organizations.

CENTERS FOR DISEASE CONTROL AND PREVENTION (CDC)

To effectively implement the CDC's National Hepatitis C Prevention
Strategy an estimated $100 million is need for the Divisions of Viral
Hepatitis (DVH). However, DVH has been flat funded at just under $18
million for many years. This chronic underfunding has resulted in
severely limited resources for State Adult Hepatitis Coordinators. The
available Federal resources often only cover a hepatitis coordinators
salary which leaves them begging, borrowing, and dealing to provide
necessary services.
Budget difficulties at the CDC are not solely limited to DVH. The
CDC's important mission has been eroded by years of funding cuts. As
you are aware, the fiscal year 2009 President's Budget Request seeks to
deepen these cuts by recommending a reduction of $433 million in budget
authority. Considering the threats of bioterrorism, pandemic influenza,
a marked rise in the incidence of hepatitis, and the increasing
prevalence of a number of other conditions, the CDC's budget must
receive a substantial increase to effectively protect the public
health.
For fiscal year 2009, HFI recommends a funding level of $7.4
billion for the CDC, an increase of $1.28 billion over fiscal year
2008.
For fiscal year 2009, HFI recommends a funding level of $50 million
for the DVH, an increase of $32 million over fiscal year 2008.

NATIONAL INSTITUTES OF HEALTH (NIH)

Investment in the NIH has led to an explosion of knowledge that has
advanced understanding of the biological basis of disease and developed
strategies for disease prevention, diagnosis, treatment, and cures.
NIH-supported scientists remain our best hope for sustaining momentum
in pursuit of scientific opportunities and new health challenges. For
example, research into why some HCV infected individuals resolve their
infection spontaneously may prove to be life saving information for
others currently infected.
As you are aware, recent years of near level-funding at NIH have
negatively impacted the mission of its Institutes and Centers. For this
reason, HFI applauds efforts like Senators Tom Harkin (D-IA) and Arlen
Specter's (R-PA) adopted amendment to the fiscal year 2009 Senate
Budget Resolutions which calls on appropriators to provide NIH with a
10.3 percent funding increase. HFI urges this Subcommittee to show
strong leadership in pursuing such a substantial funding increase.
For fiscal year 2009, HFI recommends a funding increase of at least
6.5 percent for NIH and its Institutes and Centers.

HEPATITIS FOUNDATION INTERNATIONAL (HFI)

HFI is dedicated to the eradication of viral hepatitis, a disease
affecting over 500 million people around the world. We seek to raise
awareness of this enormous worldwide problem and to educate and
motivate people to adopt healthy lifestyle behaviors to reduce the
incidence of viral hepatitis and other blood-borne pathogens.
Our mission has four distinct components:
--To educate the public, patients and professionals about the
prevention, diagnosis and treatment of viral hepatitis.
--To prevent viral hepatitis and promote healthful lifestyles.
--To serve as advocates for hepatitis patients and the medical
community worldwide.
--To support research into prevention, treatment, and cures for viral
hepatitis.
______

Prepared Statement of the HIV Medicine Association

The HIV Medicine Association (HIVMA) of the Infectious Diseases
Society of America (IDSA) represents more than 3,600 physicians,
scientists and other health care professionals who practice on the
frontline of the HIV/AIDS pandemic. Our members provide medical care
and treatment to people with HIV/AIDS throughout the United States and
the world, lead HIV prevention programs, and conduct research to
advance HIV prevention and treatment options. They are medical
providers that specialize in HIV medicine and work in communities
across the country. We urge you to sustain the three-pronged response
of the United States to the AIDS pandemic by adequately supporting:
--the research programs necessary to improve prevention and treatment
options spearheaded by the National Institutes of Health (NIH);
--the surveillance and prevention programs that help to identify
people with HIV and reduce HIV transmission led by the Centers
for Disease Control and Prevention; and
--the health care safety-net programs that are critical to providing
people with limited resources with access to lifesaving HIV
treatment through the Ryan White CARE Act programs at the
Health Resources and Services Administration (HRSA).
Past Federal investments in HIV/AIDS programs have led to a
revolution in HIV care. We developed treatments that effectively
suppress this deadly virus and supported programs that provided
lifesaving HIV treatment to people across the country regardless of
their health insurance status. Many of our members have seen patients
make remarkable recoveries that allow them to live healthier, more
productive lives. However, we are concerned about our ability to
sustain this success given our country's failure to prioritize support
for domestic discretionary programs outside of defense and homeland
security. The impact of our diminished investment in health is already
being felt and will be far-reaching and long lasting as our
communities' public health infrastructures weaken and our capacity to
lead the world in discovering new therapies for controlling deadly
diseases such as HIV erodes. If we do not act to increase our
investments in these programs, we risk losing the next generation of
scientists and clinicians necessary to continue the critical work of
preventing new infections, providing effective care and treatment and
advancing the science necessary to end the pandemic. The funding
requests in our testimony largely reflect the consensus of the Federal
AIDS Policy Partnership (FAPP), a coalition of HIV/AIDS organizations
from across the country, and are estimated to be the amounts necessary
to sustain and strengthen our investment in combating HIV disease.

CDC'S NATIONAL CENTER FOR HIV, STD, TB PREVENTION (NCHSTP)

HIVMA strongly supports substantial increases in funding for the
CDC's NCHSTP. Our prevention efforts are stymied by insufficient
funding to support a comprehensive HIV strategy. Meanwhile, the number
of people living with HIV in the United States continues to grow and
the CDC is expected to increase its estimate of the new HIV infections
that are occurring annually in the United States from 40,000 to 60,000.
Resources are desperately needed to halt this trend and support a
robust HIV prevention portfolio that includes identifying people with
HIV earlier in infection through increased HIV screening. Tuberculosis
is the major cause of AIDS-related mortality worldwide. It is critical
that we shore up our ability as a Nation to address tuberculosis,
especially drug-resistant tuberculosis here in the United States and in
the developing world. With regard to these programs, we urge at least
an increase of $608 million for domestic HIV prevention and
surveillance programs and a funding level of $300 million for CDC's
Division of Tuberculosis Elimination.
A comprehensive prevention strategy is necessary to reduce the
number of new HIV infections occurring each year. According to the CDC,
at least 25 percent of people with HIV infection in the United States
do not know it and more than 39 percent of people with HIV infection
progress to AIDS within 1 year of diagnosis. We strongly support the
CDC initiative to integrate HIV screening into medical care. The
expansion of HIV testing is critical to identifying individuals with
HIV earlier to prevent or delay disease progression and to reduce
further transmission of the disease. We are seriously concerned about
the lack of Federal resources available to State health departments and
institutions for implementing these programs.
A more robust HIV prevention budget also is needed to strengthen
HIV surveillance systems and to target uninfected individuals who
engage in high-risk behaviors. Both are important to dramatically
reduce the 40,000 to 60,000 new HIV infections estimated to occur each
year in the United States. We must increase support for science-based,
comprehensive programs. We are seriously concerned that the resources
committed to supporting a broad-based prevention agenda have diminished
while funding for unproven and unscientific abstinence-only programs
has increased. We strongly encourage Congress to halt this troubling
trend. Additional resources are needed to address the high prevalence
rates among vulnerable populations, e.g., men and women of color and
men who have sex with men. It is short sighted to compromise these
programs in order to support newer initiatives.
Funding for HIV prevention activities at the CDC should be
increased by at least $608 million. These resources should be utilized
to restore the cuts in HIV prevention cooperative agreements with state
and local health departments; to enhance core surveillance cooperative
agreements with health departments and to expand HIV testing in
critical health care venues by funding testing infrastructure, the
purchase of approved testing devices, including rapid tests and
confirmatory testing.
Funding to support the prevention, control and elimination of
tuberculosis must increase substantially if we are going to make
headway against this deadly disease and to address the emerging threat
of highly drug resistant tuberculosis. HIVMA supports at least a $159.6
million increase in funding for the CDC's Division of Tuberculosis
Elimination.
hiv/aids bureau of the health resources and services administration
HIVMA supports a total commitment of at least $2.78 billion, an
increase of $614.5 million for the Ryan White CARE Act program. This
recommendation includes a $134.6 million increase for the AIDS Drug
Assistance Program (ADAP) and an increase of $100.5 million for Part C
(Title III). The Health Resources and Services Administration (HRSA)
oversees programs that are vital to our communities' health care safety
nets--and to the ability of our clinician members to provide HIV care
and treatment to many of their patients living with HIV/AIDS. CARE Act
funding helps us to meet the serious and complex needs of people with
HIV/AIDS who are uninsured or underinsured by supporting the delivery
of primary medical care, prescription drugs, diagnostic tests, mental
health services, substance abuse treatment, and dental services in our
communities.
We strongly support a substantial increase in CARE Act funding and
would propose that the majority of new funding be targeted to HIV
medical care. In particular, we support major increases for medical
services offered under Parts A, B, C, and D and to the AIDS Drug
Assistance Program (ADAP) to ensure that individuals with HIV/AIDS have
access to a base line of lifesaving medical care and prescription drugs
regardless of where they live. Funding increases are urgently needed
for Part C programs. Many of the programs are treating more patients
with fewer grant dollars and are struggling to meet the growing demand
for HIV care in their communities. After several years of inadequate
funding, we estimate that Part C programs require an increase of $83.3
million in Federal funds. HIV clinical programs depend on funding from
multiple parts of the CARE Act to create the comprehensive services
that our patients need. We strongly encourage you to support funding
increases of $213 million for Part A, $95 million for the Part B base
and $48 million for Part D.
More that a quarter century into the HIV epidemic, we are seeing
the graying of our Nation's HIV clinical workforce, and we have serious
concerns about ensuring a new generation of HIV medical providers to
care for Americans with HIV. We increasingly hear about HIV care
coverage gaps and clinical programs with challenges in hiring and
retaining medical staff. We must address this issue before its effects
are felt in increases in morbidity and mortality from HIV. We are
delighted that legislation reauthorizing the President's Emergency
Program for AIDS Relief authorizes resources to ensure that there is an
adequate workforce to provide prevention, care and treatment services
in developing countries. We must also attend to HIV medical workforce
needs at home. We respectfully urge you to include at least $1 million
in this year's Labor-HHS-Education appropriations bill for a study to
evaluate the capacity of the HIV medical workforce as well as potential
strategies to increase the numbers of young physicians, nurse
practitioners and physician assistants entering HIV medicine.

NATIONAL INSTITUTES OF HEALTH (NIH)

HIVMA strongly supports an increase of $4.38 billion for all
research programs at the NIH including a $450 million increase for the
NIH Office of AIDS. This level of increase is vital to halting the
erosion of our Nation's medical research programs and to sustain the
pace of research that could improve the health and quality of life for
millions of Americans. The failure to sustain the U.S. investment in
biomedical research is taking its toll in deep cuts to clinical trials
networks and significant reductions in the numbers of high quality,
investigator-initiated grants that are approved. We are deeply
concerned about the significant decrease in support for original
research. With only one in four research applications receiving
funding, the pipeline for critical discoveries and HIV scientists is
dwindling and our role as a leader in biomedical research is at serious
risk.
In the arena of AIDS research, multiple years of inadequate funding
levels that do not even keep pace with medical inflation threaten our
ability to develop new therapeutics, to discover effective prevention
technologies, and to finance vaccine development. A robust and
comprehensive portfolio was responsible for the dramatic gains that we
made in our HIV knowledge base, gains that resulted in reductions in
mortality from AIDS of nearly 80 percent in the U.S. and in other
countries where treatment is available. Additionally, our remarkable
discoveries helped us to reduce the mother to child HIV transmission
rate from 25 percent to nearly 1 percent in the United States and to
very low levels in other countries where treatment is available.
A continued robust AIDS research effort is essential to sustain and
to accelerate our progress in offering more effective prevention
technologies; developing new and less toxic treatments for our; and
supporting the basic research necessary to continue our work developing
a vaccine that may end the deadliest pandemic in human history. Our
failure to make an adequate investment in this lifesaving research
compromises our ability to compare and evaluate optimum treatment and
prevention strategies in resource-poor countries, and limits our
ability to understand the appropriate role of new classes of
antiretrovirals that are currently in development here at home for
treatment and prevention. The sheer magnitude of the number of people
still living with HIV/AIDS--more than 1 million people in the United
States; 33 million people globally--demands an increased investment in
AIDS research if we are going to truly eradicate this devastating
disease.
We also strongly support the NIH's Fogarty International Center
(FIC) and recommend an expansion of its programs and funding. The FIC
training programs play a critical role in developing self-sustaining
health care infrastructures in resource-limited countries. These
important programs offer invaluable training and mentoring to
indigenous physicians from the countries hardest hit by the HIV
pandemic and other deadly infectious diseases, such as malaria and
tuberculosis. Physicians trained through the FIC are able to develop
research programs that more effectively address the health care,
cultural and resource needs of their country's residents while also
fostering the development of ongoing, robust research and clinical
programs.
Our Nation has made significant strides in responding to the HIV/
AIDS pandemic here at home and around the world, but we have lost
ground in recent years, particularly domestically, as funding
priorities have shifted away from public health and research programs.
This retreat on past investments in AIDS research through NIH,
surveillance and prevention programs through the CDC, and care and
treatment through the Ryan White CARE Act program place the remarkable
advancements of the past two decades in serious jeopardy. We have an
opportunity to reverse this trend and to move forward with a budget
that prioritizes funding for scientific discovery, public health, and
care and treatment for those without resources or adequate insurance.
With the support of this Congress, we have the opportunity to further
limit the toll of this deadly infectious disease on our planet and to
save the lives of millions who are infected or at risk of infection
here in the United States and around the world.
______

Prepared Statement of the Infectious Diseases Society of America

The Infectious Diseases Society of America (IDSA) appreciates this
opportunity to bring attention to the disastrous cuts proposed for
leading infectious disease programs in President Bush's fiscal year
2009 budget. Should these cuts go into effect, the Nation's and world's
ability to control and contain an ever-increasing number of infectious
diseases threats will be severely diminished. As many recent news
stories have shown, existing and emerging infections continue to
challenge Americans in U.S. hospitals and communities as well as people
around the globe. These infections include HIV/AIDS, methicillin-
resistant Staphylococcus aureus (MRSA), Tuberculosis (TB) including
extensively drug-resistant (XDR) TB, malaria and other resistant and
susceptible organisms, such as Escherichia coli, Pseudomonas
aeruginosa, Neisseria gonorrhoeae, Acinetobacter baumannii, and
Klebsiella species.
IDSA represents more than 8,000 infectious diseases physicians and
scientists devoted to patient care, education, research, prevention,
and public health. Our members care for patients of all ages with
serious infections, including meningitis, pneumonia, TB, antibiotic-
resistant bacterial infections such as MRSA, and those with cancer or
transplants who have life-threatening infections caused by unusual
microorganisms, food poisoning, and HIV/AIDS, as well as emerging
infections like severe acute respiratory syndrome (SARS).
Especially hard-hit in this year's budget is the Centers for
Disease Control and Prevention (CDC), the primary Federal agency
responsible for conducting and supporting public health protection
through health promotion, prevention, preparedness, and research. CDC
would see a cut of nearly half a billion dollars in its total budget,
to $5.9 billion. IDSA instead recommends increasing funding for CDC to
$7.4 billion, roughly a 15 percent increase over current funding. This
corresponds well with the Professional Judgment delivered last year by
CDC Director Julie Gerberding, which said that $7.2 billion would be
needed in fiscal year 2008 to properly fund CDC.
Within the CDC budget, IDSA is especially concerned about the
slashing of the Infectious Diseases program budget, which would be
reduced by more than $34 million, to $1.9 billion. Last year, Dr.
Gerberding told Congress the program needed an increase of nearly $315
million in fiscal year 2008, but CDC received less than one-fifth of
that amount. IDSA recommends an fiscal year 2009 funding level of $2.1
billion for CDC's Infectious Diseases programs.
Within the Infectious Disease programs' proposed budget, the
agency's already severely strapped Antimicrobial Resistance budget
would be further cut to $16.5 million. This vital program is necessary
to help combat the rising crisis of drug resistance, a critical medical
problem marked most publicly by the upsurge in MRSA infections. A CDC-
supported report published last October in the Journal of the American
Medical Association indicated that invasive MRSA infections kill more
than 19,000 Americans annually--more than emphysema, HIV/AIDS, or
Parkinson's disease. In response to the acute MRSA problem and the
growing antimicrobial resistance epidemic, IDSA recommends increasing
fiscal year 2009 funding for resistance programs at CDC by $16 million,
to a total of $33 million. Such funding increases will enable CDC to
strengthen the National Healthcare Safety Network, which supports
surveillance of drug-resistant healthcare associated infections, gather
morbidity and mortality data related to resistance, track the
development of dangerous resistant bugs as they develop, educate
physicians and parents about the need to protect the long-term
effectiveness of antibiotics, and strengthen infection control
activities across the United States.
In addition, a proposed $26 million cut (which represents a more
than 20 percent reduction, to $103.6 million) to CDC's ``Other Emerging
Infectious Diseases'' line item would hobble the agency's core
infrastructure and ability to respond to new threats as they emerge.
Past and existing threats have included rabies, rotavirus, food-borne
diseases, Ebola, SARS, and others. The proposed cut would severely
affect CDC laboratory capacity, research grants to academic partners,
and support for State public health departments and public health
laboratories and would reduce CDC's flexibility in setting priorities
and taking action against new infections that emerge throughout the
year. IDSA recommends, at a minimum, that the Other Emerging Infectious
Diseases line item be increased to $145 million for fiscal year 2009.
The section 317 Program at CDC has been one of our country's
greatest public health achievements. In part through the section 317
Program that provides funding for immunization to States and other
jurisdictions, the United States has made significant progress toward
eliminating vaccine-preventable diseases among children. At a time when
new CDC-recommended vaccines are available and a greater commitment to
immunizations for both children and adults is necessary, the proposed
cuts to this program will undermine access to a critical intervention
that saves lives and millions of dollars in unnecessary medical
spending. Therefore, IDSA is recommending a funding level for the
Section 317 Program of $802 million.
IDSA also supports changes which will significantly strengthen the
Section 317 Program's support for adult and adolescent immunization.
Each year, more than 46,000 adults die of vaccine-preventable diseases
(VPDs). Costs related to illnesses from adult VPDs are approximately
$10 billion. Distinct funding floors for adult vaccine purchase and
infrastructure are needed in amounts sufficient to cover immunization
of the majority of under-insured and uninsured adults with all CDC-
recommended vaccines.
Recent cuts have eroded national TB control programs, which is
especially concerning as threats from XDR and multi-drug resistant TB
grow. As news reports on incidences of TB have shown, CDC is stretched
extremely thin in their ability to respond and control TB outbreaks. A
total of $300 million is needed across CDC for efforts to prevent,
control and eliminate TB.
The budget request for HIV prevention and surveillance activities
at CDC also is woefully inadequate. These programs are critical to
reducing the number of new HIV cases occurring annually in the United
States. Sufficient resources must be devoted to HIV prevention to
support CDC's portfolio of prevention programs, including the
initiative to identify people with HIV/AIDS earlier through routine HIV
screening. This program will lead to lifesaving care sooner and will
help to prevent further transmissions. IDSA supports funding of $1.3
billion for these programs in fiscal year 2009. We also support funding
of $2.78 billion for the Ryan White CARE Act programs within the Health
Resources and Services Administration, including $299.3 million for
Part C programs. Ryan White programs are vital to our health care
safety net and are struggling to meet the need for HIV services in
communities across the country.
The President also proposes to flat-fund the National Institutes of
Health (NIH) in fiscal year 2009, which represents a continued setback
for this important agency. NIH is the single-largest funding source for
infectious diseases research in the United States and the life-source
for many academic research centers. The NIH-funded work conducted at
these centers lays the ground work for advancements in treatments,
cures, and medical technologies. However, since 2003, NIH has lost 13
percent of its purchasing power due to the rate of biomedical research
inflation and stagnating annual budgets. Because of the flat budget,
three out of four research proposals submitted to NIH are not funded.
Peer reviewers are forced to become more risk averse, leading to a
narrowing of scientific vision and a diminishing rate of medical
advancement. Without medical advancements, thousands of Americans will
have to wait longer for the cures they need.
The President's budget proposal does not come close to reaching the
authorized funding level of $32.8 billion set for fiscal year 2008
contained in the NIH Reform Act, which passed in 2006. Therefore, IDSA
is recommending an increase of at least $1.9 billion in fiscal year
2009 for NIH, to a total of $31.1 billion. This increase would return
the budget to historical growth (equaling the rate of biomedical
research inflation plus approximately 3 percent).
NIH's Fogarty International Center is at the forefront of global
health and is a leader in extending the United States Federal
biomedical enterprise abroad. It taps innovative thinking from all
parts of the world and fosters important scientific partnerships.
Through Fogarty, the United States has supported research and research
training programs conducted by both United States and foreign
investigators across a wide range of infectious diseases and needs,
including HIV/AIDS, malaria, and tuberculosis. The Center's efforts
have led to improved local health outcomes--but so much more can be
done. For this reason, IDSA strongly supports increasing Fogarty's
funding level in fiscal year 2009 to $100 million--an increase of $33
million. These additional resources will enable Fogarty to increase
research training initiatives, forge new partnerships between United
States and foreign research institutions, and conduct much-needed
implementation research to increase the effectiveness of international
programs.
IDSA also proposes an increase in antimicrobial resistance research
funding at NIH of $100 million in fiscal year 2009, bringing it to a
total of $321 million. This funding level would allow NIH to strengthen
clinical research and establish a clinical trials network to study
resistant infections as well as antibacterial use and development.
Well-designed, multi-center randomized controlled trials would create
an excellent basis of evidence from which coherent and defensible
recommendations could be developed.
Additionally, in the Agriculture appropriations bill, IDSA would
propose that antimicrobial resistance programs at the Food and Drug
Administration receive at least a $10 million increase in new funding
in fiscal year 2009, bringing its resistance funding to $34 million.
This would allow FDA to establish and periodically update antibiotic
susceptibility breakpoints based on testing and data collection,
including through the purchase of vendor data; fund Critical Path
initiatives for antibiotics; more aggressively review the safety of
antibiotic use in food animals; and quicken its pace in developing
critical guidance for industry on antibiotic clinical trial designs.
The Department of Health and Human Services' Biomedical Advanced
Research and Development Authority (BARDA) holds great potential to
encourage and facilitate the development of new medical countermeasures
and technologies. Congress authorized $1.07 billion for this mission;
however, since BARDA's creation in December 2006, only $201 million has
been provided. We are disappointed that Congress' and the
administration's intent in creating BARDA have not been actualized. The
current funding level has not allowed HHS to establish an active,
robust advanced research and development portfolio for biomedical
products. An analysis conducted by the Center for Biosecurity indicates
that $817 million in fiscal year 2009 would be required to support one
year of advanced development for just the 32 candidate medical
countermeasures against biological threats currently in development.
IDSA recommends that $850 million of multi-year appropriations be
allocated to BARDA in fiscal year 2009 to fund biological therapeutics,
diagnostics, and technologies. Such funding would help ensure the
availability of resources throughout the advanced stages of development
and the flexibility for BARDA to partner effectively with developers.
IDSA commends the BARDA Influenza and Emerging Disease Program for
taking great strides to advance our knowledge and ability to produce a
safe and efficacious pre-pandemic vaccine. However, many challenges
remain, including complexities of vaccine manufacturing and surge
capacity as well as the timely production of a more closely-matched
pandemic strain vaccine. For this critical program to continue to move
forward, IDSA strongly encourages the Congress to fund the Influenza
and Emerging Disease Program at $1.29 billion, to be available over
multiple years. This increase over the budget proposal would include
$308 million for advanced vaccine development, $234 million for vaccine
stockpiling, and $248 million for antiviral stockpiling.
Funding for pandemic influenza preparedness at other agencies
within HHS has also been proposed in fiscal year 2009. We were greatly
disappointed last year when the final omnibus appropriations bill
included only $74 million for pandemic flu, rather than the $948
million requested. This year's budget request would fund ongoing
pandemic flu activities at the Federal agencies at $313 million. IDSA
strongly supports this funding.
Today's investment in infectious disease research, prevention, and
treatments will pay significant dividends in the future by dramatically
reducing health care costs and improving the quality of life for
millions of Americans. In addition, U.S. leadership in infectious
diseases research and prevention will translate into worldwide health
benefits. We urge the subcommittee to continue to demonstrate
leadership and foresight in this area by appropriating the much-needed
resources outlined above in recognition of the lives and dollars that
ultimately will be saved.
______

Prepared Statement of the International Foundation for Functional
Gastrointestinal Disorders

SUMMARY OF RECOMMENDATIONS FOR FISCAL YEAR 2009

A minimum 6.5 percent Funding Increase for the National Institutes
of Health and its Institutes and Centers.
Urge the National Institutes of Health to Expand the Research
Portfolios on Functional Gastrointestinal Disorders, Like Irritable
Bowel Syndrome.
Provide Adequate Resources for the National Institutes of Health to
Effectively Implement the Soon-to-be-Released Long-Range Research Plan
for Digestive Diseases, Currently Being Drafted by the National
Commission on Digestive Diseases.
Thank you for the opportunity to present this written statement
regarding the importance of functional gastrointestinal and motility
disorders research.
Since our establishment in 1991, the International Foundation for
Functional Gastrointestinal Disorders (IFFGD) has been dedicated to
increasing awareness of functional gastrointestinal and motility
disorders among the public, health professionals, and researchers. On
the federal level, we are currently assisting the National Institute of
Diabetes and Digestive and Kidney Diseases (NIDDK) with creation of
their Long-Range Research Plan for Digestive Diseases as a member of
the National Commission on Digestive Diseases (NCDD). Also, IFFGD
recently worked with the NIDDK, the National Institute of Child Health
and Human Development (NICHD), and the Office of Medical Applications
of Research (OMAR) on the NIH State-of-the-Science Conference on the
Prevention of Fecal and Urinary Incontinence in Adults, which was held
in December of last year.
The majority of diseases and disorders we address have no cure and
treatment options are often limited. We have yet to completely
understand the mechanisms of the underlying conditions. Patients face a
life of learning to manage a chronic illness that is accompanied by
pain and an unrelenting myriad of gastrointestinal symptoms. The
medical and indirect costs associated with these diseases are enormous;
estimates range from $25-$30 billion annually. Economic costs spill
over into the workplace, and are reflected in work absenteeism and lost
productivity. Furthermore, the human toll is not only on the individual
but also on the family. In essence, these diseases account for lost
potential for the individual and society.

IRRITABLE BOWEL SYNDROME (IBS)

IBS strikes people from all walks of life. It affects 30 to 45
million Americans and results in significant human suffering and
disability. This chronic disease is characterized by a group of
symptoms, which include abdominal pain or discomfort associated with a
change in bowel pattern, such as loose or more frequent bowel
movements, diarrhea, and/or constipation. Although the cause of IBS is
unknown, we do know that this disease needs a multidisciplinary
approach in research and treatment.
IBS can be emotionally and physically debilitating. Due to
persistent bowel unpredictability, individuals who suffer from this
disorder may distance themselves from social events, work, and even may
fear leaving their home.
A strategic plan for IBS is currently a component of the NCDD's
Long-Range Research Plan for Digestive Diseases. For fiscal year 2009,
IFFGD urges Congress to review the NCDD's Long-Range Research Plan for
Digestive Diseases and provide NIDDK with the resources necessary to
effectively implement the plan's recommendations.

FECAL INCONTINENCE

At least 12 million Americans suffer from fecal incontinence.
Incontinence is neither part of the aging process nor is it something
that affects only the elderly. Incontinence crosses all age groups from
children to older adults, but is more common among women and in the
elderly of both sexes. Often it is a symptom associated with various
neurological diseases and many cancer treatments. Yet, as a society, we
rarely hear or talk about the bowel disorders associated with spinal
cord injuries, multiple sclerosis, diabetes, prostate cancer, colon
cancer, uterine cancer, and a host of other diseases.
Damage to the anal sphincter muscles; damage to the nerves of the
anal sphincter muscles or the rectum; loss of storage capacity in the
rectum; diarrhea; or pelvic floor dysfunction can cause fecal
incontinence. People who have fecal incontinence may feel ashamed,
embarrassed, or humiliated. Some don't want to leave the house out of
fear they might have an accident in public. Most attempt to hide the
problem for as long as possible. They withdraw from friends and family,
and often limit work or education efforts. Incontinence in the elderly
burdens families and is the primary reason for nursing home admissions,
an already huge social and economic burden in our increasingly aged
population.
In November 2002, IFFGD sponsored a consensus conference entitled,
Advancing the Treatment of Fecal and Urinary Incontinence Through
Research: Trial Design, Outcome Measures, and Research Priorities.
Among other outcomes, the conference resulted in six key research
recommendations including more comprehensive identification of quality
of life issues; improved diagnostic tests for affecting management
strategies and treatment outcomes; development of new drug treatment
compounds; development of strategies for primary prevention of fecal
incontinence associated with childbirth; and attention to the process
of stigmatization as it applies to the experience of individuals with
fecal incontinence.
In December of last year, IFFGD collaborated with NIDDK, NICHD, and
OMAR on the NIH State-of-the-Science Conference on the Prevention of
Fecal and Urinary Incontinence in Adults. The goal of this conference
was to assess the state of the science and outline future priorities
for research on both fecal and urinary incontinence; including, the
prevalence and incidence of fecal and urinary incontinence, risk
factors and potential prevention, pathophysiology, economic and quality
of life impact, current tools available to measure symptom severity and
burden, and the effectiveness of both short and long term treatment.
For fiscal year 2009, IFFGD urges Congress to review the Conference's
Report and provide NIH with the resources necessary to effectively
implement the report's recommendations.

GASTROESOPHAGEAL REFLUX DISEASE (GERD)

Gastroesophageal reflux disease, or GERD, is a common disorder
affecting both adults and children, which results from the back-flow of
acidic stomach contents into the esophagus. GERD is often accompanied
by persistent symptoms, such as chronic heartburn and regurgitation of
acid. Sometimes there are no apparent symptoms, and the presence of
GERD is revealed when complications become evident. One uncommon
complication is Barrett's esophagus, a potentially pre-cancerous
condition associated with esophageal cancer. Symptoms of GERD vary from
person to person. The majority of people with GERD have mild symptoms,
with no visible evidence of tissue damage and little risk of developing
complications. There are several treatment options available for
individuals suffering from GERD.
Gastroesophageal reflux (GER) affects as many as one-third of all
full term infants born in America each year. GER results from an
immature upper gastrointestinal motor development. The prevalence of
GER is increased in premature infants. Many infants require medical
therapy in order for their symptoms to be controlled. Up to 25 percent
of older children and adolescents will have GER or GERD due to lower
esophageal sphincter dysfunction. In this population, the natural
history of GER is similar to that of adult patients, in whom GER tends
to be persistent and may require long-term treatment.

GASTROPARESIS

Gastroparesis, or delayed gastric emptying, refers to a stomach
that empties slowly. Gastroparesis is characterized by symptoms from
the delayed emptying of food, namely: bloating, nausea, vomiting or
feeling full after eating only a small amount of food. Gastroparesis
can occur as a result of several conditions, including being present in
30 percent to 50 percent of patients with diabetes mellitus. A person
with diabetic gastroparesis may have episodes of high and low blood
sugar levels due to the unpredictable emptying of food from the
stomach, leading to diabetic complications. Other causes of
gastroparesis include Parkinson's disease and some medications,
especially narcotic pain medications. In many patients the cause of the
gastroparesis cannot be found and the disorder is termed idiopathic
gastroparesis. Over the last several years, as more is being found out
about gastroparesis, it has become clear this condition affects many
people and the condition can cause a wide range of symptoms of
differing severity.

CYCLIC VOMITING SYNDROME

Cyclic vomiting syndrome (CVS) is a disorder with recurrent
episodes of severe nausea and vomiting interspersed with symptom free
periods. The periods of intense, persistent nausea, vomiting, and other
symptoms (abdominal pain, prostration, and lethargy) lasts hours to
days. Previously thought to occur primarily in pediatric populations,
it is increasingly understood that this crippling syndrome can occur in
a variety of age groups including adults. Patients with these symptoms
often go for years without correct diagnosis. The condition leads to
significant time lost from school and from work, as well as substantial
medical morbidity. The cause of CVS is not known. Better understanding,
through research, of mechanisms that underlie upper gastrointestinal
function and motility involved in sensations of nausea, vomiting and
abdominal pain is needed to help identify at risk individuals and
develop more effective treatment strategies.

SUPPORT FOR CRITICAL RESEARCH

IFFGD urges Congress to provide the necessary funding for the
expansion of the research activities at NIDDK and the Office of
Research on Women's Health (ORWH) regarding functional gastrointestinal
(GI) disorders and motility disorders. This increased funding will
allow for the growth of new research on functional GI disorders and
motility disorders at NIDDK and ORWH, and implementation of the
strategic plan on IBS research.
Recent years of near level-funding at NIH have negatively impacted
the mission of its Institutes and Centers. For this reason, IFFGD
applauds efforts like Senators Tom Harkin (D-IA) and Arlen Specter's
(R-PA) adopted amendment to the fiscal year 2009 Senate Budget
Resolutions which calls on appropriators to provide NIH with a 10.3
percent funding increase. IFFGD urges this Subcommittee to show strong
leadership in pursuing such a substantial funding increase.
For fiscal year 2009, IFFGD recommends a funding increase of at
least 6.5 percent for NIH and its Institutes and Centers.
Thank you for the opportunity to present the views of the
Functional GI Disorders community.
______

Prepared Statement of the International Myeloma Foundation

The International Myeloma Foundation (IMF) appreciates the
opportunity to submit written comments for the record regarding fiscal
year 2009 funding for myeloma cancer programs. The IMF, the oldest and
largest myeloma foundation, is dedicated to improving the quality of
life of myeloma patients while working toward prevention and a cure.
To ensure that myeloma patients have access to the comprehensive,
quality care they need and deserve, the IMF advocates on-going and
significant Federal funding for myeloma research and its application.
The IMF stands ready to work with policymakers to advance policies and
programs that work toward prevention and a cure for myeloma and for all
other forms of cancer.

MYELOMA BACKGROUND

Myeloma is a cancer in the bone marrow affecting production of red
cells, white cells and stem cells. It is also called ``multiple
myeloma,'' because multiple areas of bone marrow may be involved.
Myeloma is the second most common blood cancer after lymphomas,
affecting an estimated 750,000 people worldwide and its prevalence
appears to be is increasing significantly.
No one knows the exact causes of myeloma. Doctors can seldom
explain why one person develops this disease and another does not.
Research has shown that people with certain risk factors such as age
and race are more likely than others to develop myeloma. Growing older
increases the chance of developing multiple myeloma as most people with
myeloma are diagnosed after age 65. However, in recent years the
diagnosis of myeloma in people 40 years of age and younger appears to
have become more common as our ability to detect and diagnose this
disease has improved. The risk of myeloma is highest among African
Americans and lowest among Asian Americans.
Scientists are studying other possible risk factors for myeloma.
Toxic chemicals (for example, agricultural chemicals and Agent Orange
used in Vietnam), radiation (including atomic radiation), and several
viruses (including HIV, hepatitis, herpes virus 8, and others) are
associated with an increased risk of myeloma and related diseases.
According to the American Cancer Society, 19,920 Americans will be
diagnosed with myeloma and 10,690 will lose their battle with this
disease in 2008. Even while they live with the disease, myeloma
patients can suffer debilitating fractures and other bone disorders,
severe side effects of their treatment, and other problems that
profoundly affect their quality of life, and significantly impact the
cost of their health care. Despite these grim statistics, significant
gains in the battle against myeloma have been made through our Nation's
investment in cancer research and its application. Research holds the
key to improved myeloma prevention, early detection, diagnosis, and
treatment, but such breakthroughs are meaningless unless we can deliver
them to all Americans in need.

SUSTAIN AND SEIZE CANCER RESEARCH OPPORTUNITIES

Our Nation has benefited immensely from past Federal investment in
biomedical research at the National Institutes of Health (NIH). The IMF
has joined with the broader health community in advocating a $30.81
billion budget for NIH in fiscal year 2009. This will allow NIH to
sustain and build on its research progress resulting from the recent
doubling of its budget while avoiding the severe disruption to that
progress that would result from a minimal increase. Myeloma research is
producing extraordinary breakthroughs--leading to new therapies that
translate into longer survival and improved quality of life for myeloma
patients. Although myeloma was once considered a death sentence with
limited options for treatment, today there are dozens of drugs in
clinical trials for myeloma in the United States alone, and several
recently-developed drug regimens can be used in sequence to help
myeloma patients maintain their daily routines for years and even
decades. To that end, the IMF calls upon Congress to allocate $5.26
billion to the National Cancer Institute (NCI) in fiscal year 2009 to
continue our battle against myeloma and its sequelae.

BOOST OUR NATION'S INVESTMENT IN MYELOMA PREVENTION, EARLY DETECTION,
AND AWARENESS

As the Nation's leading prevention agency, the Centers for Disease
Control and Prevention (CDC) plays an important role in translating and
delivering at the community level what is learned from research.
Therefore, the IMF joins with our partners in the cancer community--
including One Voice Against Cancer (OVAC)--in calling on Congress to
provide additional resources for the CDC to support and expand much-
needed and proven efforts in such areas as cancer prevention, early
detection, and risk reduction. Specifically, the IMF advocates the
appropriation of $445.5 million in fiscal year 2009 for CDC's cancer
prevention and control initiatives.
Within that allocation, the IMF specifically advocates $5.5 million
for the Geraldine Ferraro Blood Cancer Program. Authorized under the
Hematological Cancer Research Investment and Education Act of 2002,
this program was created to provide public and patient education about
blood cancers, including myeloma.
With grants from the Geraldine Ferraro Blood Cancer Program, the
IMF has successfully promoted awareness of myeloma, particularly in the
African-American community and other underserved communities. IMF
accomplishments include the production and distribution of more than
4,500 copies of an informative video which addresses the importance of
myeloma awareness and education in the African-American community to
churches, community centers, inner-city hospitals, and Urban League
offices around the country, increased African-American attendance at
IMF Patient and Family Seminars (these seminars provide invaluable
treatment information to newly diagnosed myeloma patients), increased
calls by African-American myeloma patients, family members, and
caregivers to the IMF myeloma hotline, and the establishment of
additional support groups in inner city locations in the United States
to assist underserved areas with myeloma education and awareness
campaigns. Furthermore, the more than 90 IMF-affiliated patient support
groups in the United States also made this effort their main goal
during ``Myeloma Awareness Week'' in October 2005.
An allocation of $5.5 million in fiscal year 2009 will allow this
important program to continue to provide patients--including those
populations at highest risk of developing myeloma--with educational,
disease management and survivorship resources to enhance treatment and
prognosis.

CONCLUSION

The IMF stands ready to work with policymakers to advance policies
and support programs that work toward prevention and a cure for
myeloma. Thank you for this opportunity to discuss the fiscal year 2009
funding levels necessary to ensure that our Nation continues to make
gains in the fight against myeloma.
______

Prepared Statement of the Interstate Mining Compact Commission

We are writing in support of the fiscal year 2009 budget request
for the Mine Safety and Health Administration (MSHA), which is part of
the U.S. Department of Labor. In particular, we urge the subcommittee
to support a full appropriation for grants to States for safety and
health training of our Nation's miners pursuant to section 503(a) of
the Mine Safety and Health Act of 1977. MSHA's budget request for State
grants is $8.941 million. This represents a slight increase over the
amount approved by Congress last year and, as such, does not fully
consider inflationary and programmatic increases being experienced by
the states. We therefore urge the subcommittee to restore funding to
the statutorily authorized level of $10 million for State grants so
that States are able to meet the training needs of miners and to fully
and effectively carry out state responsibilities under section 503(a)
of the act.
The Interstate Mining Compact Commission is a multi-state
governmental organization that represents the natural resource,
environmental protection and mine safety and health interests of its 24
member States. The States are represented by their Governors who serve
as Commissioners.
IMCC's member States are concerned that without full funding of the
State grants program, the federally required training for miners
employed throughout the United States will suffer. States are
struggling to maintain efficient and effective miner training and
certification programs in spite of increased numbers of trainees and
the incremental costs associated therewith. State grants have flattened
out over the past several years and are not keeping place with
inflationary impacts or increased demands for training. The situation
is of particular concern given recent mine accidents and the additional
training requirements that states have already put in place or that may
be required under new MSHA regulations, especially those pursuant to
the MINER Act.
As you consider our request to increase MSHA's budget for State
training grants, please keep in mind that the States play a
particularly critical role in providing special assistance to small
mine operators (those coal mine operators who employ 50 or fewer miners
or 20 or fewer miners in the metal/nonmetal area) in meeting their
required training needs. In this regard, we want to express our
continued strong support for the Small Mines Initiative and are hopeful
that the amount budgeted for this worthwhile program will provide for
the effective operation of MSHA's Small Mines Office.
In closing, we should also note that MSHA's grants to the States
also allow us to provide other services to the Nation's miners and to
mine operators in such areas as mine accident investigations and
occupational diseases, including silicosis and ``black lung''.
We appreciate the opportunity to submit our views on the MSHA
budget request as part of the overall Department of Labor budget.
Please feel free to contact us for additional information or to answer
any questions you may have.
______

Prepared Statement of the Jeffrey Modell Foundation

Mr. Chairman and members of the subcommittee: Thank you for the
opportunity to present this testimony to the Subcommittee. My name is
Vicki Modell and, along with my husband Fred, we created the Jeffrey
Modell Foundation (JMF) in 1987 in memory of our son, Jeffrey, who died
at the age of 15 as a result of a life long battle against one of the
estimated 140 primary immunodeficiency (PI) diseases.
The Jeffrey Modell Foundation is an international organization with
its headquarters in New York City. In the 21 years since we established
it, the Foundation has grown into the premier advocacy and service
organization on behalf of people afflicted with primary
immunodeficiency diseases. As a demonstration of the extent to which
the JMF leads in the field, please consider the following:
--The Foundation has created Jeffrey Modell Research and Diagnostic
Centers at 38 academic and teaching hospitals from coast to
coast in the United States and throughout the world. The
Centers funded by the Jeffrey Modell Foundation are located in
Boston, Los Angeles, New York City, Philadelphia, Seattle,
Stanford, San Francisco, Miami, Milwaukee, Dallas, Chicago, and
others. The JMF Referral Network includes 350 physicians at 180
Centers in 53 countries spanning 6 continents.
--The Foundation conducts a national physician education and public
awareness campaign, currently funded with approximately $2.9
million appropriated by this subcommittee to the Centers for
Disease Control and Prevention (CDC) and awarded by contract to
the JMF. To date, the Foundation has leveraged the Federal
money to generate in excess of $90 million in donated media
with hundreds of thousands of placements on television, radio,
print, and other public media, as well as a 30-minute program
produced for PBS. The campaign has also included physician
symposia, conducted for CME credits in locations throughout the
country. It has also included mailings to physicians in a
variety of specialist and primary care fields, including
pediatrics and several pediatric specialties, family practice,
and internal medicine, as well as school nurses, clinical and
registered nurses and daycare centers.
--In addition, the Foundation has long been a provider of direct
patient services such as KIDS Days that give young people an
opportunity to meet and share experiences with others similarly
situated in their communities in a fun atmosphere that
encourages a feeling of normalcy in patients. This was
something that Jeffrey never experienced and one of the things
we wanted to address from the beginning of the Foundation. We
also offer a hotline that serves patients 24 hours a day.
First and foremost, Mr. Chairman, I am here today to thank you and
all the members of this subcommittee on both a personal and a
professional level. Personal because whenever Fred and I come to
Washington, whether it is to testify here before the committee or to
meet with the members of the subcommittee individually in their
offices, every Member of Congress and every member of your staffs are
unfailingly polite, courteous, interested and caring. The response that
we receive, and the warmth and understanding that we enjoy, makes this
a labor of love for us.
Professional because over the 16 years that we have been coming to
Washington, we have been given the opportunity to build a partnership
with the Congress, the Centers for Disease Control and Prevention, the
National Institutes of Health, as well as with our own supporters in
the private sector, including industry and other concerned donors. We
believe that we have maximized the benefits for patients from the
support that this subcommittee has afforded us. I would like to take a
few minutes to discuss where we are and, more importantly, where we are
going with your continued support.

CENTERS FOR DISEASE CONTROL AND PREVENTION

This subcommittee is currently funding CDC with $2.9 million for
physician education and public awareness of immune deficiencies. I am
delighted to report that the President's recommended budget for fiscal
year 2009 continues the program at its fiscal year 2008 level. The
Jeffrey Modell Foundation operates the program under a contract with
CDC, with whom we have a very strong relationship.
Since the campaign's inception, it has generated nearly $100
million in donated media, including television and radio spots,
magazine ads, billboards, airport signs and other print media. It has
also enabled us to raise additional funding from the private sector--
both individuals and the pharmaceutical industry. To this point, every
$1 provided by the subcommittee to this program has been leveraged into
more than $10 for this education and awareness program. Also, visits to
the website have increased by more than 50 percent from approximately
600,000 per month to over 900,000 per month. Continuing to incorporate
``new media'' into the campaign will extend its reach, particularly to
young parents and others.
Most importantly, Mr. Chairman, I am delighted to report to you
that the program that this subcommittee has funded is having exactly
the impact that all of us hoped it would when it was created. Allow me
to give you some specifics. This data was recently published in the
scientific journal Immunology Research. 169 physicians from 85 Jeffrey
Modell Diagnostic and Referral Centers responded to a survey relating
to PI. Baseline reports for the period before the Education and
Awareness program and reports for the year following the program were
compared. The results were striking.
--The number of patients diagnosed at these centers went from
approximately 5,900 at baseline to over 31,000 in the follow
up, an annual increase of 132 percent.
--Patient referrals from generalists to specialists increased by 87
percent.
--The number of diagnostic tests performed went up by an astounding
656 percent.
--There was a 102 percent annual increase in the number of patients
receiving treatment.
--Finally, patients receiving intravenous immunoglobulin went up by
81 percent.
But, it is fair of this subcommittee to ask ``so what?'' What
difference does it make to the to the health of these patients if they
are now in treatment? What is the real impact in a real world sense on
the patients that are found?
Eighty five centers responded to a survey assessing 532 patient
records and again the data are amazing. Comparing patients' charts for
the year before diagnosis and the year after diagnosis, the following
conclusions are reached:
--Acute infections are down 72 percent.
--Physician/hospital/ER visits are down 83 percent.
--Severe infections are down 86 percent.
--Pneumonias are down 79 percent.
--Days with chronic infections are down 72 percent.
--Time on antibiotics is down 56 percent.
--Days in the hospital are down 73 percent.
--School/work days missed are down 74 percent.
But, again, the subcommittee might ask, ``How does diagnosing and
treating patients improve the public health and help reduce health care
costs?'' That is a fair question and one we are prepared to answer.
The economic impact of PI diagnosis was carefully assessed
comparing the costs of treatment before diagnosis and after. In round
numbers what we learned was that the average annual cost of health care
for an undiagnosed patient is $103,000 per year. The same costs for the
same patients in the year after diagnosis are $23,000. The gross annual
savings is $80,000 per patient. The NIH estimates that at least 500,000
cases of PI are undiagnosed in the United States, thus the economic
impact of undiagnosed PI patients to the healthcare system of the
United States totals over $40 billion annually.
Mr. Chairman, this program is working. We are respectfully
requesting that the funding level in the President's budget receive
just a five percent cost of living increase so that we can continue to
build on the success we have had to date.

NEWBORN SCREENING PROGRAM

As described above, early diagnosis is critical to the health of
patients and to saving the healthcare system money. And, there are few
better examples of early diagnosis than newborn screening. The JMF has
worked long and hard to support the development of a newborn screening
program for Severe Combined Immune Deficiency (SCID), the most severe
and deadly form of PI.
Early detection of SCID through newborn screening is vital because
bone marrow transplants cure over 98 percent of infants who have the
procedure before developing any serious infections. The treatment costs
less than $10,000. However, if an infant receives a transplant after
developing severe infections, the success rate is only between 50 and
60 percent; the costs associated with the treatment of these infants
can be as high as $1 million.
After working with NIH and a private company to develop a screening
test for SCID, we collaborated with the CDC to hold a meeting in
Atlanta on this topic with scientists and public health officials from
around the country. The result was a commitment from the State of
Wisconsin to run a pilot program for SCID testing. The pilot program
screened 10,000 babies in 2007. I am delighted to report that this
program developed into general population screening effective January
1, 2008. Every baby born in Wisconsin is being tested for SCID. Next
year, Mr. Chairman, I hope to report on the success of this project.
The Wisconsin project was funded by the State, Children's Hospital
and the JMF. The fiscal year 2008 Omnibus Appropriations bill contains
$1.0 million to expand this pilot program to at least two additional
States. We hope to have results for you on this next year as well. And,
Mr. Chairman, we are asking that the $1.0 million be restored to the
fiscal year 2009 appropriations bill so that this life-saving and
money-saving endeavor can go forward in more States.

NATIONAL INSTITUTES OF HEALTH

Mr. Chairman, in addition to CDC, the Jeffrey Modell Foundation has
a long history of working closely with the National Institutes of
Health on the scientific research issues that surround primary
immunodeficiencies. We have long enjoyed a strong collaborative
relationship with several institutes and want to inform the
subcommittee of the exciting new initiative we are undertaking.
In our frequent meetings with the world's top researchers in this
field, we have become increasingly concerned that the constraints on
the NIH budget are having a negative impact on researchers' ability to
stay in this field and to develop the next generation of PI
researchers.
After doing a series of meetings around the NIH, we have reached an
agreement to enter into a collaborative research program. The JMF will
bring its resources to the NIH and match Federal funding on a research
initiative that will be targeted at jumpstarting the field and moving
the science forward through the normal peer-review channels.
Our partners in this endeavor--NIAID, NICHD, NHLBI and NIDDK--are
working now to craft the announcement of the availability of this
funding. We are envisioning a multi-institute, multi-disciplinary
program that will generate up to $14 million in new research. There
remains so much to learn, particularly when it comes to the causes and
cures at the molecular level. For this program, all we are seeking is a
strongly encouraging paragraph of report language that has been
submitted by at least two of your colleagues.
Again, this is an initiative that we are looking forward to coming
back to you next year with good news about the success we anticipate we
will be having by the time your committee reconvenes.

CONCLUSION

With the support the Jeffrey Modell Foundation has received from
this subcommittee over the years, we have been able to increase the
public's awareness of PI and most importantly improve and save lives.
We are grateful for your past and continued support. While we
understand that the subcommittee must make difficult decisions in this
fiscal environment, please remember that the Foundation has
successfully leveraged Federal dollars to expand the reach of all of
our activities. Frankly, the collaboration between the Federal
Government and the Jeffrey Modell Foundation has been a model for
successful public-private collaborations. The impact of every Federal
dollar spent on the education and awareness campaign, on newborn
screening, and on research has been exponentially increased by our
commitment to bring the Foundation's resources to bear. This is a real
working partnership, because as always we ask only for a hand, never
for hand-out.
Mr. Chairman, again, we are delighted to have the opportunity to
present to the subcommittee and stand ready to continue to work with
you.
______

Prepared Statement of the March of Dimes Foundation

The 3 million volunteers and 1,400 staff members of the March of
Dimes Foundation appreciate the opportunity to submit the Foundation's
Federal funding recommendations for fiscal year 2009. The March of
Dimes is a national voluntary health agency working to improve the
health of mothers, infants and children by preventing birth defects,
premature birth and infant mortality through research, community
services, education, and advocacy. The volunteers and staff of the
March of Dimes urge the subcommittee to provide the funding increases
recommended below.

NATIONAL INSTITUTES OF HEALTH (NIH)

The March of Dimes joins the larger research community in
recommending a $1.9 billion increase in funding for the NIH bringing
total Federal support to over $31 billion. Since the doubling of NIH's
budget was completed in 2003, the agency has lost 15 percent of its
purchasing power due to biomedical inflation. With the threats to
children's health, and the economic and societal costs associated with
long-term disabilities and care, it is imperative to increase the
overall investment in medical research.
Office of the Director
The March of Dimes strongly supported congressional approval of
$110.9 million for the National Children's Study (NCS) in fiscal year
2008 Consolidated Appropriations Act, allowing for implementation of
the next phase of the study. The Foundation urges the subcommittee to
include within the Office of the Director $192.3 million ($81.4 million
increase) for the NCS in fiscal year 2009. While the amount may seem
substantial, it is dwarfed by the cost of treating the diseases and
conditions the study is designed to address. The NCS holds the
potential to provide data on the causes of birth defects and premature
birth, including, but not limited to, the role that diabetes and pre-
diabetic conditions may play in birth defects, and the impact of
infection and inflammation in stimulating pre-term delivery.
National Institute of Child Health and Human Development (NICHD)
The March of Dimes recommends $1.34 billion for NICHD in fiscal
year 2009. In recent years, the NICHD has made a major commitment to
enhance our understanding of the factors that result in premature birth
and to develop strategies to prolong pregnancy so that infants are born
at full term. Since 1981, the preterm birth rate in the United States
has increased 30 percent resulting in 543,000 premature births in
2006--or 1 in 8 newborns. Any woman can have a preterm baby and in
about a third of the cases, the causes remain unknown.
In 2006, the Institute of Medicine (IOM) report entitled, ``Preterm
Birth: Causes, Consequences and Prevention'' found that the annual
economic burden associated with preterm birth in the United States was
at least $26.2 billion, or $51,600 per infant born preterm, and that
there are persistent disparities in preterm birth rates among different
racial and ethnic groups.
The NICHD supported research including work done through the
Maternal-Fetal Medicine Units (MFMU), Neonatal Research (NR) and the
Genomics and Proteomics Networks must continue. Specifically, over the
past year NICHD funded clinical trials to investigate the impact of
administering a derivative of progesterone to reduce preterm labor and
delivery in women with a short cervix and women with multiple
gestations. The findings from these clinical trials will further
enhance our understanding of the causes of preterm labor and delivery.

CENTERS FOR DISEASE CONTROL AND PREVENTION (CDC)

National Center on Birth Defects and Developmental Disabilities
(NCBDDD)
NCBDDD conducts programs to protect and improve the health of
children by preventing birth defects and developmental disabilities and
by promoting optimal development and wellness among children with
disabilities. Of particular interest to the March of Dimes is NCBDDD's
birth defects program that includes surveillance, research and
prevention activities. For fiscal year 2009, the Foundation requests an
increase of $3 million to support the National Birth Defects Prevention
Study and an additional $2 million for folic acid education. These
modest increases are sorely needed to continue progress in reducing the
incidence of birth defects.
As the causes of nearly 70 percent of birth defects are unknown, it
is important to continue to fund the National Birth Defects Prevention
study--the largest case controlled study of birth defects ever
conducted--to unveil the causes and to prevent birth defects. The nine
centers located in Massachusetts, New York, North Carolina, Georgia,
Texas, Arkansas, Iowa, Utah, and California participating in the study
identify infants with major birth defects; interview mothers about
medical history, environmental exposures and lifestyle before and
during pregnancy; and collect DNA samples to study gene-environment
interactions. With nearly 11 years worth of data and samples collected
and $85 million invested, this study is a rich source of information on
possible causes of birth defects.
Several years of erosion in funding make it critical to provide a
$3 million increase for the National Birth Defects Prevention Study in
fiscal year 2009. Without this increase CDC will be unable to maintain
operation of all nine Centers of Excellence and will lose the capacity
to conduct important analyses of genetic samples.
NCBDDD also funds State birth defects tracking systems, programs to
prevent birth defects and improve access to health services for
children with birth defects. Surveillance forms the backbone of a
vital, functional and responsive public health network. Additional
resources are sorely needed to help States seeking assistance. Finally,
NCBDDD is conducting a national public and health professions education
campaign designed to increase the number of women taking folic acid.
CDC estimates that up to 70 percent of neural tube defects (NTDs) could
be prevented if all women consume folic acid prior to becoming pregnant
and although progress is being made, according to a recent CDC
analysis, 60 percent of women of childbearing age are still not
consuming the daily recommended amount of folic acid making it more
important than ever that CDC be provided the resources it needs to
expand its educational campaign.
Safe Motherhood/Infant Health
The National Center for Chronic Disease Prevention and Health
Promotion, Division of Reproductive Health works to promote optimal
reproductive and infant health. The March of Dimes recommends a $5
million increase, as authorized in the PREEMIE Act (Public Law 109-
450), for CDC to expand epidemiological studies to evaluate the social,
biological, and medical factors associated with preterm birth, in an
effort to identify ways to prevent preterm birth and racial
disparities. Finding the causes and preventing preterm birth is complex
and requires research that examines medical, social, infection related,
genetic, environmental and behavioral factors. Currently, CDC works
with a number of universities and organizations to support research
into the causes of preterm birth and the reasons for disparities
between racial and ethnic groups. It is essential that this work
continue.
National Immunization Program
CDC's National Immunization Program provides grants to State,
local, and territorial public health agencies to reduce the incidence
of disability and death resulting from vaccine preventable diseases.
Yet nearly 1 million 2 year olds in the United States have not received
the one or more recommended vaccines. The March of Dimes urges the
Subcommittee to continue its longstanding policy of ensuring that
Federal vaccine programs are well funded. For fiscal year 2009, the
March of Dimes recommends $802.4 million. These funds are needed to
reach more children as well as to account for vaccine price increases
and introduction of new vaccines.
Polio Eradication
Since its creation as an organization dedicated to research and
services related to polio, the March of Dimes has been committed to the
eradication of this disabling disease. For fiscal year 2009 the
Foundation recommends a funding level of $101.254 million for CDC's
fiscal year 2009 global polio eradication program. The U.S. Government
must maintain its commitment to the worldwide polio eradication
initiative that promises to save lives and reduce unnecessary health-
related costs globally.
National Center for Health Statistics
The National Center for Health Statistics (NCHS) provides data
essential for both public and private research and programmatic
initiatives. The National Vital Statistics System and the National
Survey on Family Growth, for example, are the principal sources of
information on the utilization of prenatal care and on birth outcomes,
including preterm delivery, low birthweight and infant mortality. The
March of Dimes supports a funding level of $125 million, an increase of
$11 million over fiscal year 2008, to ensure the continuation of NCHS'
central role in monitoring the Nation's health.
health resources and services administration (hrsa)
Newborn Screening
Newborn screening is a vital public health activity used to
identify and treat genetic, metabolic, hormonal and functional
conditions that, if left untreated, can cause disability, mental
retardation, serious illnesses or even death. Parents are often unaware
that while nearly all babies born in the United States are screened,
the number and quality of these tests vary from State to State. The
March of Dimes, the American Academy of Pediatrics and the American
College of Medical Genetics recommend that every baby born in the
United States be screened for 29 treatable conditions. As of March
2008, only 19 States and the District of Columbia screen for all 29
conditions.
Federal support for State newborn screening is provided through the
Maternal and Child Health Block Grant, Special Projects of Regional and
National Significance (SPRANS). The Foundation urges a $4.9 million
SPRANS set-aside for newborn screening activities (an increase of $3
million over fiscal year 2008). This funding is needed to support State
efforts to improve programs, acquire innovative testing technologies
and increase capacity to reach and educate health professionals and
parents with accurate information on newborn screening programs and
follow up services.
Healthy Start
The Healthy Start Initiative is a collection of community-based
projects focused on reducing infant mortality, low birthweight and
racial disparities in perinatal outcomes. The March of Dimes strongly
supports Healthy Start and recommends a funding level of $110 million
in fiscal year 2009 to help decrease the Nation's unacceptably high
rate of infant mortality.
Maternal and Child Health Block Grant
Title V of the Social Security Act, the Maternal and Child Health
(MCH) Block Grant, provides assistance for community-based programs
(i.e.: home visiting, respite care for children with special health
care needs and supplementary services for pregnant women and children
enrolled in Medicaid and SCHIP), but Federal support has not kept pace
with increased enrollment and demand for services. The March of Dimes
therefore recommends full funding of the MCH Block Grant at the
authorized level of $850 million.

FISCAL YEAR 2009 FEDERAL FUNDING RECOMMENDATIONS
[In millions of dollars]
------------------------------------------------------------------------
March of Dimes
Fiscal year fiscal year
Program 2008 funding 2009
recommendation
------------------------------------------------------------------------
National Institutes of Health (Total). 29,230 31,130
National Children's Study............. 110.9 192.3
National Institute of Child Health 1,255 1,340
& Human Development..............
National Human Genome Research 487 519
Institute........................
National Center on Minority Health 200 213
and Disparities..................
Centers for Disease Control and 6,375 7,400
Prevention (CDC).....................
Save Motherhood/Infant Health 42.3 47.3
(NCCDPHP)........................
Birth Defects Research & 13.7 16.7
Surveillance.................
Folic Acid Education Campaign. 2 4
Immunization...................... 523 802
Polio Eradication............. 98 101
National Center for Health 114 125
Statistics.......................
Health Resources and Services 6,948 7,948
Administration (Total)...............
Maternal and Child Health Block 666 850
Grant............................
Newborn Screening............. 1.9 4.9
Newborn Hearing Screening......... 12 12
Consolidated (Community) Health 2,065 2,313
Centers..........................
Healthy Start..................... 100 110
Agency for Healthcare Research and 335 360
Quality..............................
------------------------------------------------------------------------

______

Prepared Statement of the Medical Library Association and the
Association for Academic Health Sciences Libraries

SUMMARY OF RECOMMENDATIONS FOR FISCAL YEAR 2009

(1) A minimum 6.5 percent funding increase for the National
Institutes of Health and the National Library of Medicine.
(2) Support for the National Library of Medicine's Urgent Facility
construction needs.
(3) Continued support for the Medical Library community's role in
the National Library of Medicine's Outreach, Telemedicine, Disaster
Preparedness and Health Information Technology Initiatives.
On behalf of the Medical Library Association (MLA) and the
Association of Academic Health Sciences Libraries (AAHSL), thank you
for the opportunity to present testimony regarding fiscal year 2009
appropriations for the National Library of Medicine (NLM).
MLA is a nonprofit, educational organization with more than 4,500
health sciences information professional members worldwide. Founded in
1898, MLA provides lifelong educational opportunities, supports a
knowledgebase of health information research, and works with a global
network of partners to promote the importance of quality information
for improved health to the health care community and the public.
AAHSL is comprised of the directors of the libraries of 142
accredited American and Canadian medical schools belonging to the
Association of American Medical Colleges (AAMC). AAHSL's goals are to
promote excellence in academic health sciences libraries and to ensure
that the next generation of health professionals is trained in
information-seeking skills that enhance the quality of healthcare
delivery.
As you are aware, recent years of near level-funding at the
National Institutes of Health (NIH) have negatively impacted the
mission of NLM. For this reason, MLA and AAHSL applaud efforts like
Senators Tom Harkin (D-IA) and Arlen Specter's (R-PA) adopted amendment
to the fiscal year 2009 Senate Budget Resolutions which calls on
appropriators to provide NIH with a 10.3 percent funding increase. MLA
and AAHSL are urging this Subcommittee to show strong leadership in
pursuing such a substantial funding increase. For fiscal year 2009, MLA
and AAHSL are recommending a funding increase of at least 6.5 percent
for NIH and NLM. A 6.5 percent funding increase would allow NLM to
adequately address 5 key areas that are at the core of its mission.
They are:

THE GROWING DEMAND FOR THE NLM'S BASIC SERVICES

It is a tribute to NLM that demand for its services and expertise
continues to grow. As the world's foremost digital library and
knowledge repository in the health sciences, NLM provides critical
infrastructure in the form of data repositories and integrated
services, such as GenBank and PubMed which are helping to advance
science to individualized medicine based on our unique genetic
differences.
As the world's largest and most comprehensive medical library,
services based on NLM's traditional and electronic collections continue
to steadily increase each year. These collections stand at more than
11.4 million items-books, journals, technical reports, manuscripts,
microfilms, photographs and images. By selecting, organizing and
ensuring permanent access to health science information in all formats,
NLM is ensuring the availability of this information for future
generations, making it accessible to all Americans, irrespective of
geography or ability to pay, and ensuring that each citizen can make
the best, most informed decisions about their healthcare. NLM is a
national treasure and support for its programs and services could not
be more important at the present time. Without NLM our Nation's medical
libraries would be unable to provide the quality information services
that our Nation's health professionals, educators, researchers, and
patients have all come to expect.

OUTREACH AND EDUCATION

NLM has taken a leadership role in promoting educational outreach
aimed at public libraries, secondary schools, senior centers and other
consumer-based settings. One example of NLM's leadership is the
``Partners in Information Access'' program which is designed to improve
the access of local public health officials to information needed to
prevent, identify, and respond to public health threats. With nearly
6,000 members in communities across the country, the National Network
of Libraries of Medicine (NNLM) is well positioned to ensure that every
public health worker has electronic health information services that
can protect the public's health.
Currently at the University of Iowa (UI), the Empowering Public
Health/Patient Safety Outreach through the Community Partnerships
program is providing train-the-trainer sessions in local settings to
instruct public health educators and community program planners on
developing patient safety programming for consumers.
Perhaps most notably, with help from the Congress, NLM, NIH and the
Friends of NLM, launched NIH MedlinePlus Magazine in September 2006.
This quarterly publication is distributed in doctors' waiting rooms,
and provides the public with access to high quality, easily understood
health information. ``Go Local'' is another exciting feature of
MedlinePlus that enables local and state agencies and others to
participate by creating sites that link the MedlinePlus information
seeker to local pharmacies, doctors and other health and social
services. This service also provides a platform for enhancing public
access to the information needed to prepare for and respond to
disasters and emergencies. For example, UI librarians have begun a
project to link MedlinePlus health topic pages to local health
resources by geographic areas, including hospitals, physicians, nursing
homes, support groups, health screening providers and many others. This
will allow health consumers to link directly from a health topic, for
example asthma, to local services such as clinics, pulmonary
specialists, and support groups in the geographic area selected.
Yet another service is NLM's clinical trials database, which lists
more than 53,000 United States and international trials for a wide
range of diseases. The clinical trials database is a free and
invaluable resource to patients and families who are interested in
participating in cutting-edge treatments for serious illnesses. Last
September, Congress took a major step to improve the transparency of
clinical trials for drugs and devices by passing legislation that
greatly expands mandatory registration of clinical trials in
ClinicalTrials.gov, requires submission of summary trial results data
for the first time, and imposes significant penalties for non-
compliance.
MLA and AAHSL thank Congress for efforts to improve public access
to information regarding the results of clinical trials, but remain
concerned that no additional funds have been appropriated to support
this major new NLM responsibility. MLA and AAHSL applaud the success of
NLM's outreach initiatives, particularly those initiatives that reach
out to medical libraries and health consumers. We ask the subcommittee
to encourage NLM to continue to coordinate its outreach activities with
the medical library community in fiscal year 2009.

EMERGENCY PREPAREDNESS AND RESPONSE

MLA and AAHSL are pleased that NLM has established a Disaster
Information Management Research Center to expand NLM's capacity to
support disaster response and management initiatives, as recommended in
the NLM Board of Regents Long Range Plan for 2006-2016, we ask the
subcommittee to show its support for this initiative, which has a major
objective ensuring continuous access to health information and
effective use of libraries and librarians when disasters occur.
Following Hurricane Katrina, NLM worked with health sciences libraries
across the country to provide health professionals and the public with
access to needed health and environmental information by: (1) quickly
compiling web pages on toxic chemicals and environmental concerns, (2)
rapidly providing funds, computers and communication services to assist
librarians in the field who were restoring health information services
to displaced clinicians and patients and (3) rerouting interlibrary
loan requests from the afflicted regions through the National Network
of Libraries of Medicine.

HEALTH INFORMATION TECHNOLOGY AND BIOINFORMATICS

NLM has played a pivotal role in creating and nurturing the field
of medical informatics, most notably through the creation of GenBank
and a wide array of related scientific data and analysis tools which
provide critical infrastructure for the Nation's researchers.
For nearly 35 years, NLM has supported informatics research and
training and the application of advanced computing and informatics to
biomedical research and healthcare delivery including a variety of
telemedicine projects. Many of today's informatics leaders are
graduates of NLM-funded informatics research programs at universities
across the country. Many of the country's exemplary electronic health
record systems have benefited from NLM grant support.
MLA and AAHSL encourage the Subcommittee to continue their support
of NLM's medical informatics and genomic science initiatives. MLA and
AAHSL also request support for health information technology
initiatives at the Office for the National Coordinator for Health
Information Technology and the Agency for Healthcare Research and
Quality that build upon initiatives housed at NLM.

NLM'S FACILITIES NEEDS

Over the past two decades NLM has assumed many new
responsibilities, particularly in the areas of biotechnology, health
services research, and high performance computing and consumer health.
As a result, NLM has had tremendous growth in its basic functions
related to the acquisition, organization and preservation of an ever-
expanding collection of biomedical literature and expanded staff. NLM
now houses 1,100 staff in a facility built to accommodate only 650.
This increase in the volume of biomedical information and in the number
of personnel has led to a serious space shortage. Digital archiving has
added to the challenge, as materials must often be stored in multiple
formats and as new digital resources consume increasing amounts of
storage space. As a result, the space needed for computing facilities
has also grown, further squeezing out staff. In order for NLM to
continue its mission as the world's premier biomedical library, a new
facility is urgently needed. The NLM Board of Regents has assigned the
highest priority to supporting the acquisition of a new facility.
Further, Senate Report 108-345 that accompanied the fiscal year 2005
appropriations bill acknowledged that the design for the new research
facility at NLM had been completed, and the subcommittee urged NIH to
assign a high priority to this construction project so that the
information-handling capabilities and the good of biomedical research
are not jeopardized. MLA and AAHSL encourage the subcommittee to
provide the resources necessary to construct a new facility for NLM.
Thank you for the opportunity to present the views of the medical
library community.
______

Prepared Statement of the Melanoma Research Foundation

Mr. Chairman and members of the subcommittee, I thank you for
providing me the opportunity to submit testimony to the Senate Labor,
Health and Human Services Appropriations Subcommittee. I am Randy
Lomax, and I am a melanoma survivor and chairman of the board of the
Melanoma Research Foundation.

MELANOMA RESEARCH FOUNDATION

The Melanoma Research Foundation (MRF) is committed to research,
education and advocacy in our national battle to find more effective
treatments and, ultimately, a cure for this disease. We are the primary
U.S. non-profit organization serving the melanoma community and welcome
your partnership and support of our efforts.
Our programs and services include:
--Research.--In 2008 we are investing $1 million to fund melanoma
research grants. These include 14 Career Development Awards
($50,000 per year for a maximum of 2 years) and 3 Established
Investigator Awards ($100,000 per year for a maximum of two
years). We are committed to attracting the best and brightest
young scientists to melanoma research and to funding long-term
scientists on the cutting edge of finding answers. We are also
supporting the Society for Melanoma Research, the international
organization of melanoma scientists, through an annual grant
which supports ongoing efforts as well as their annual
educational convention.
--Education.--In addition to this website, we manage the Melanoma
Patients Information Page (www.melanoma.org), the international
chat room for the melanoma community; and distribute a
quarterly newsletter of information, activities and resources.
MRF also sponsors educational symposia around the United
States. I encourage you to check our website to see where and
when these symposia will be held in 2008. In 2007 we initiated
a ``Melanoma 101'' teleconference with a leading melanoma
clinician that provided a personal opportunity to both learn
more about this disease, as well as asking questions of a
leading physician in the melanoma field. We will continue these
teleconferences in 2008.
--Advocacy.--MRF is active in Washington, DC. We work to keep
melanoma awareness a high priority with elected officials and
to encourage their support of research funding. As well, we are
in ongoing communications with the National Cancer Institute of
the National Institutes of Health. To increase our presence
with federal officials, MRF spearheaded the creation of a
Melanoma Alliance of all melanoma organizations in the United
States and is the primary supporter of this new organization.

MELANOMA AND SKIN CANCER FACTS

The statistics on melanoma and skin cancer are staggering and
impact all Americans. The following background information on melanoma
has been taken from the introductory section of the National Cancer
Institutes' ``Community-Oriented Strategic Action Plan for Melanoma
Research'':
--Incidence of Melanoma is High and is Increasing.--The American
Cancer Society estimated that in 2007, there were almost 60,000
new cases of melanoma, the most serious form of skin cancer,
and more than 8,000 deaths. The NCI has documented a 619
percent increase in the annual incidence of melanoma and a 165
percent increase in the annual mortality from 1950 to 2000.
Melanoma continues to be the fifth leading type of new cancer
diagnosis in the United States. The mortality rate of melanoma
for persons ages 16-29 is exceeded only by breast cancer,
cervical cancer and non-Hodgkin's Lymphoma. Furthermore, while
the death rates for other common cancers such as breast, colon,
and prostate cancer are declining, death rates for melanoma
have increased over the past 25 years.
--Melanoma Results in Lost Years in the Lives of Americans.--Melanoma
primarily affects individuals in the prime of their lives--the
mean age for diagnosis of melanoma is 50, while for many other
cancers it is 65 to 70. Advanced melanoma takes a greater toll
than other solid tumors in terms of productive life-years lost.
Approximately $1.5 billion is spent in the United States each
year on treatment of melanoma.
Despite these alarming statistics, there is no cure for melanoma.
There has been progress in the clinical management of melanoma, but the
only curative treatment available is surgery to remove the primary
tumor or lymph nodes prior to metastasis. For patients with advanced
melanoma, their median lifespan is less than one year.

SKIN CANCER PREVENTION AND CDC

Research funding for the prevention of skin cancer has been
disproportionately low. Skin cancer stands alone as the cancer for
which incidence and mortality are rising unabated while the best means
for combating the disease, prevention and early detection, continues to
be severely underutilized. In part, this is related to the fact that
less than 2 percent of the Centers for Disease Control and Prevention's
cancer control budget is devoted to prevention of skin cancer. For
fiscal year 2009, we are requesting that the CDC's skin cancer
prevention program receive $5 million for public and professional
education.

MELANOMA RESEARCH AND THE NIH

The Melanoma Research Foundations joins the biomedical advocacy
community within urging the Appropriations Committee to provide a 6.5
percent increase in funding for the National Institutes of Health in
its fiscal 2009 Labor, Health and Human Services, Education and Related
Agencies Appropriations bill.
However, we understand the challenges facing the Appropriations
Committee, and the problems created by the President's proposed budget
for non-defense discretionary spending, which fails to offer any
increase for NIH over the fiscal 2008 enacted level. For that reason,
we respectfully request the Committee's support for report language
encouraging the National Cancer Institute to be more strategic in
investing the limited dollars for melanoma research that it does
receive.
By way of background, we at MRF have been working with Congress,
the NCI, and the extramural research community, to develop a strategic
plan for melanoma research. The fiscal 2007 Senate Appropriations
Committee (Senate Report No. 109-287) requested that the NCI to convene
a panel of extramural and intramural scientists and consumers to
identify the current shortfalls and promise of melanoma research and
develop a 5-year strategic plan for melanoma research that recommends
new directions and targets for future research.
In response to that language, the NCI convened a workshop in
February 2007, and from the recommendations of that meeting prepared a
``Community-Oriented Strategic Action Plan for Melanoma Research,''
which was submitted to Congress in July of last year. This Strategic
Plan identified three over-arching transformational melanoma research
opportunities: reducing melanoma mortality through prevention and early
detection; streamlining the development of personalized melanoma
diagnosis and treatment; and improving melanoma survival. The panel
also identified three cross-cutting, resource-building initiatives that
are needed to support efforts to address the three transformational
research opportunities: creating a Melanoma Investigators Consortium;
promoting sharing of melanoma biospecimens, cell lines, animal models,
and research data; and creating a critical mass of researchers in
melanoma.
The Congress renewed its interest in NCI's progress in implementing
the recommendations of the ``Strategic Plan for Melanoma Research'' in
the fiscal 2008 Senate Appropriations Committee Report. That report
``strongly encourage[d] the NCI to devote sufficient funds in the areas
of research opportunity identified by the plan and issue program
announcements in those areas.'' The Appropriations Committee went on to
request the Cancer Institute ``to report by July 1, 2008, on steps it
has taken to implement the plan.''
Mr. Chairman, the melanoma advocacy and extramural research
community have been working with NCI and we agree that there are
specific opportunities NCI can take advantage of to advance melanoma
research. Those opportunities are:
--targeted therapies in melanoma, including searching for the genes
that drive melanoma, inhibiting pathways that drive melanoma,
and developing biomarkers for classification, detection, risk
assessment and therapy selection;
--host response in melanoma, including developing strategies to
target inhibitory immune cells and to augment the specific and
innate immune response; and
--melanoma prevention, including identification of mechanisms by
which intense sun exposure lead to the development of melanoma,
developing applications of imaging technology for early
detection, and making progress toward facilitating a randomized
trial of screening for melanoma.
We have included language for the fiscal year 2009 committee report
that encourages the NCI to invest its melanoma research dollars on the
strategic areas identified above.
Thank you, Mr. Chairman, for providing me the opportunity to
represent the community of people affected melanoma and to present
written testimony before the Committee on the need for increased
funding for NIH and NCI and ensuring that the dollars NCI has for
research in melanoma are strategically used according to the plan
developed by the research community.

NATIONAL CANCER INSTITUTE

Melanoma.--The Committee is aware of the ongoing dialogue between
the National Cancer Institute and the advocacy and extramural research
community on prioritizing NIH-funded melanoma research, starting with
the 2005 Roadmap for New Opportunities in Melanoma Research and most
recently with the 2007 Community-Oriented Strategic Action Plan for
Melanoma Research.
The Committee is further aware of the advocacy and research
community's effort to further prioritize melanoma research into three
categories: targeted therapies in melanoma (basic), host response in
melanoma (clinical); and prevention, including exploring the
feasibility of a randomized trial of screening for melanoma. In a
period of limited resources, the Committee encourages the NCI to better
target its funds to those areas of research opportunity identified
above--basic, clinical, and prevention--and utilize all available
mechanisms, including program announcements, to target research in
those areas. The Committee requests the NCI to report by July 1, 2009,
on steps it has taken to implement those strategic investments in
melanoma research.
______

Prepared Statement of Mended Hearts

I am Robert A. Scott, National Advocacy Chairman for Mended Hearts
Inc., a heart disease support group with more than 300 chapters across
the United States and Canada. In 2007, accredited Mended Hearts
volunteers visited about 3,000 heart patients in more than 400
hospitals throughout the United States.
As a walking testimony of the benefits of NIH-supported heart
research, I would like to share my story. In 1998, at age forty-eight,
I suffered my first heart attack while playing volleyball. While at
Woonsocket, Rhode Island's Landmark Medical Center, doctors diagnosed
me as suffering a so called silent heart attack. I learned that as many
as 4 million Americans experience this type of episode--a heart attack
with no warning.
After being stabilized, I was transferred to Roger Williams
Hospital, in Providence, Rhode Island for a heart catheterization--the
gold standard for diagnosis of heart problems. The procedure showed
that I had a blockage in my artery that required a stent to open it.
Also, it showed that the lower chamber of my heart was damaged,
resulting in congestive heart failure that could be controlled with
medicine. A stent was inserted in my artery in Rhode Island Hospital.
In 1999, I received another heart catheterization in Miriam
Hospital because of the damage to my heart from the silent heart
attack. However, this time, I was told that my artery could not be
repaired with a stent and that I needed heart bypass surgery the next
morning. Calling me a high risk patient because of my age and my
weakened heart, my surgeon encouraged me to find a doctor in Boston
because my heart might not start again. However, he assured me that if
this happens they had a device that could keep me alive for only seven
hours. Thank goodness, he told me that in Boston they had another
device that could keep me alive for 7 months while they located a
replacement heart. In less then 10 hours, I went from the possibility
of needing another stent, heart bypass surgery, and a heart transplant.
My journey with heart disease continued.
My next stop was to visit my local cardiologist in Woonsocket who
estimated my survival rate at 20 percent, but he thought I would
survive the heart bypass surgery. Thankfully, he was right and I
survived heart bypass surgery.
But my journey didn't end there. My congestive heart failure was
causing my heart to beat irregularly, so an implantable defibrillator
was inserted to control the problem in 2002. However, this device had
to be replaced nearly 4 years later. My story continues in 2007 where I
started experiencing daily chest pain and shortness of breath. Yet
another heart catheterization showed that I needed an additional stent,
but this time in Miriam Hospital. After the procedure, the doctor told
me the original heart bypass surgery was no longer effective. Although
I was scared, my doctors comforted me by explaining that a new medical
innovation could save my life--a drug eluting stent. They explained
that it could open up the original blockage from my silent heart
attack. My doctor explained that if these state-of-the art stents had
been available in 1998, I would not have had to have heart bypass
surgery.
Today, heart attack, stroke and other cardiovascular diseases
remain our Nation's most costly and No. 1 killer and a major cause of
disability. Thanks to medical research supported by the NIH, I am alive
today. I am concerned that NIH continues to invest only 7 percent of
its budget on heart research and a mere 1 percent on stroke research
when there are so many people in our country just like I am. Enhanced
NIH funding dedicated to heart and stroke research will bring us closer
to a cure for these often deadly and disabling diseases.
______

Prepared Statement of the Montgomery County Stroke Association

I am Flora Ingenhousz, a psychotherapist in private practice in
Silver Spring, Maryland. I have always been in excellent health and
live an active, healthy lifestyle. Doctors always commented on my low
blood pressure and my excellent cholesterol numbers. But I suffered a
stroke 2 years ago. It was a shock to me and my family, friends and
clients.
One morning 2 years ago, when doing a load of laundry, I had no
idea how to set the dials, despite the fact that I had used them weekly
for the last 10 years. I stood there for what seemed an eternity before
I figured out how to set the dials.
Next I went to do yoga. In one of the poses, I noticed my right arm
was hanging limp. When my husband asked me a question, my answer was
just the opposite of what I wanted to say. I caught my error and tried
again, but it soon became clear that something was wrong. My symptoms
kept getting worse.
When we walked into the ER, my right leg was weak, and I could not
sign my name at the desk. Twelve hours later, I could not move my right
side, and my speech was reduced to yes and no. Not a good thing for a
psychotherapist, where language is a primary tool!
In the ER, a CT scan showed a hemorrhagic or bleeding stroke where
an artery burst, destroying millions of brain cells within minutes,
affecting my speech and my ability to perform activities like dressing
in the correct order. Also, my right arm and leg were extremely weak.
However, I could understand everything, and I was never completely
paralyzed. But, I was scared.
I was in intensive care for 4 days of observation and lots of
testing, but the tests provided no answers. Two days after my stroke,
while still in intensive care, I started occupational, physical and
speech therapy. It was extremely challenging to feed myself with my
right hand, requiring all my concentration. After a meal or brushing my
teeth, I was exhausted. Speaking was the hardest of all. My brain
seemed devoid of words.
After being stabilized, I was transferred to the National
Rehabilitation Hospital. For a week, I endured speech, physical,
occupational and recreational therapies.
Speech therapy was the hardest, but also the most important given
my profession. Several times, the speech therapist challenged me to the
brink of tears.
After a week at the Rehabilitation Hospital, I went home and to
outpatient therapies. Speech therapy lasted the longest. After being
discharged from speech therapy, I still had deficits in my
organizational skills and abstract thinking.
As I struggled with starting to see my clients again, I slid into a
deep depression. I was not confident that I could continue to practice.
For months, I saw no point in living. Recovery from my post-stroke
depression was harder than the recovery of my arms and legs and even
speech!
Being a psycho-therapist, I know how to treat depression, so I went
to a psychiatrist who prescribed anti-depressant medication and, I also
found a psychotherapist.
After months on anti-depressants and excellent psychotherapy, my
depression began to lift. I continue on the drugs and to see my
psychotherapist. Emotionally, the aftermath of my stroke cut deep.
I am fortunate that 2 years post-stroke, I am back to my practice
full-time. I lead support groups for stroke survivors and caregivers
through the Montgomery County Stroke Association and serve on its
Board. I now lecture on stroke, stroke prevention and stroke recovery.
I also founded ``hope for stroke''--individual and family counseling
for stroke survivors and caregivers. In addition, I have participated
in a NIH study about stroke recovery.
Once again, I am in excellent health and have resumed my active
life style. I thank my brain for having the capacity to work around the
dead cells. But most of all, I thank my therapists for my recovery.
Their ability to zero in so effectively would not have been possible
without NIH research.
Because stroke is a leading cause of death and disability and major
cost to society, I urge you to provide stroke research with a
significant funding increase. I am concerned that NIH continues to
invest only 1 percent of its budget in stroke research.
Thank you.
______

Prepared Statement of the National Alliance to End Homelessness

The National Alliance to End Homelessness (the Alliance) is a
nonpartisan, nonprofit organization which represents a united effort to
address the root causes of homelessness and challenge society's
acceptance of homelessness as an inevitable by-product of American
life. These partners are local faith-based and community-based
nonprofit organizations and public sector agencies that provide
homeless people with housing and services such as substance abuse
treatment, job training, and physical health and mental health care.

SUMMARY OF APPROPRIATIONS GOALS

Moving Forward to End Homelessness
--Communities across America are working toward ending homelessness.
Communities are using Federal, State, and local funds to help
homeless persons maintain housing. It is important that this
progress not be undermined. To this end, the Alliance
recommends the following:
--Allocate an additional $44 million for services for homeless
people within SAMHSA's PRNS accounts of the Center for
Mental Health Services and Center for Substance Abuse
Treatment.
--Increase funding to Projects for Assistance in Transition from
Homelessness (PATH) to $75 million.
--Increase the Runaway and Homeless Youth Act Programs to $140
million.
--Provide a $248 million increase in the Community Health Center
program within Health Resource Services Administration.
This would result in a $21.5 million increase in the Health
Care for the Homeless program.
--Fund Education for Homeless Children and Youth services at its
full authorized level of $85 million.
--Increase funding for the Homeless Veterans Reintegration Program
to $50 million.
Connecting Homeless Families, Individuals, and Youth to Mainstream
Services
--People experiencing homelessness also depend on mainstream programs
such as the ones below to live day to day and once housed,
remain housed. The Alliance recommends the following to meet
this goal:
--Fund the Social Services Block Grant at $2.8 billion
--Reject cuts and fund the Community Services Block Grant at $700
million
--Appropriate $60 million in education and training vouchers for
youth exiting foster care under the Safe and Stable
Families Program.
--Fund the Community Mental Health Services Performance Partnership
Block Grant at $482.9, a $61.9 million increase.
--Fund the Substance Abuse Prevention and Treatment Block Grant at
$1.858 billion

BACKGROUND

Our 2007 report, Homelessness Counts, estimates that 744,313 people
are homeless on any given night. This includes 98,452 families with
children and 23 percent of homeless people are defined as chronically
homeless; these are people with a disability and have been homeless
repeatedly or continuously for 12 months. Successful interventions for
all homeless populations couple housing with an appropriate level of
services for the family or individual. We call on Congress to
adequately fund programs that assist States and local entities in
developing permanent housing and providing the necessary social
services to end homelessness for all Americans.

DETAILED PROGRAM DESCRIPTIONS

Goal #1.--Moving Forward to End Homelessness
Support Services for Permanent Supportive Housing Projects
The Alliance recommends allocating an additional $44 million for
services in permanent supportive housing within SAMHSA's Center for
Mental Health Services and Center for Substance Abuse Treatment. Years
of reliable data and research demonstrate that the most successful
intervention to solve chronic homelessness is linking housing to
appropriate support services. Current investments by SAMHSA in homeless
programs are highly effective and cost efficient. Last year, the
Department of Health and Human Services updated its 2004 report
entitled Ending Chronic Homelessness: Strategies for Action. While
acknowledging some success since 2004, the strategic plan explained
that personal and programmatic barriers to mainstream programs, such as
Medicaid, TANF, Medicare and general substance abuse and mental health
services funds, still exist and must be overcome to end homelessness.
Projects for Transition Assistance from Homelessness (PATH)
The Alliance recommends that Congress increase PATH funding to $75
million and adjust the funding formula to increase allocations for
small States and territories.
PATH provides outreach to eligible consumers and ensures that those
consumers are connected with mainstream services. Under the PATH
formula grant, approximately 30 States share in the program's annual
appropriations increases. The remaining States and territories receive
the minimum grant of $300,000 for States and $50,000 for territories.
These amounts have not been raised since 1991. To account for
inflation, the minimum allocation should be raised to $600,000 for
States and $100,000 for territories. Amending the minimum allocation
requires a legislative change. If the authorizing committees do not
address this issue, we hope that appropriators will explore ways to
make the change through appropriations bill language.
Runaway and Homeless Youth Programs
The Alliance recommends funding the Runaway and Homeless Youth Act
(RHYA) programs at $140 million. RHYA programs end homelessness by:
engaging youth living on the street with Street Outreach Programs,
quickly providing emergency shelter and family crisis counseling
through the Basic Centers, or providing supportive housing that helps
young people develop lifelong independent living skills through
Transitional Living Programs. Last year, the Congressional Research
Service issued a report complimenting the good work of RHYA programs
but detailing the gaps in services due to limited funding. For example,
only one-tenth of the youth who connect with a RHYA program are able to
receive services. It is essential that Congress increase this program.
Community Health Centers (CHC) and Health Care for the
Homeless (HCH) programs
The Alliance recommends a $248 million increase in the CHC program.
This would result in a $21.5 million increase in the HCH program.
Persons living on the street suffer from health problems resulting from
or exacerbated by being homeless, such as hypothermia, frostbite, and
heatstroke. In addition, they often have infections of the respiratory
and gastrointestinal systems, tuberculosis, vascular diseases such as
leg ulcers, and hypertension.\1\ Health care for the homeless programs
are vital to prevent these conditions from becoming fatal. Congress
allocates 8.7 percent of the Consolidated Health Centers account for
HCH projects.
---------------------------------------------------------------------------
\1\ Harris, Shirley N, Carol T. Mowbray and Andrea Solarz. Physical
Health, Mental Health and Substance Abuse Problems of Shelter Users.
Health and Social Work, Vol. 19, 1994.
---------------------------------------------------------------------------
Education for Homeless Children and Youth
The Alliance recommends funding Education for Homeless Children and
Youth (EHCY) at $85 million. School is the most important potential
source of stability for homeless children. The mission of the EHCY
program is to ensure that these children can continue to attend school
and thrive. The EHCY program, within the Department of Education's
Office of Elementary and Secondary Education, 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.
Homeless Veterans Reintegration Program (HVRP)
The Alliance recommends that Congress increase HVRP funding to $50
million.
HVRP, within the Department of Labor's Veterans Employment and
Training Service (VETS), provides competitive grants to community-
based, faith-based, and public organizations to offer outreach, job
placement, and supportive services to homeless veterans. HVRP is the
primary employment services program accessible by homeless veterans. It
is estimated that this program only reaches about two percent of the
overall homeless veteran population. An appropriation at the authorized
level of $50 million would enable HVRP grantees to reach approximately
19,866 homeless veterans.
Goal #2.--Connecting Homeless Families, Individuals and Youth to
Mainstream Services
Social Services Block Grant (SSBG)
The Alliance recommends that Congress increase SSBG funding to $2.8
billion. SSBG funds are essential for programs dedicated to ending
homelessness. In particular, youth housing programs and permanent
supportive housing providers often receive State, county, and local
funds which originate from the SSBG. As the U.S. Department of Housing
and Urban Development has focused its funding on housing, programs that
provide both housing and social services have struggled to fund the
service component of their programs. This gap is often closed using
Federal programs such as SSBG.
Community Services Block Grant (CSBG)
The Alliance recommends that Congress rejects cuts and fund CSBG at
$700 million. Funding cuts for CSBG will destabilize the progress
communities have made toward ending homelessness by not only ending
services directly provided by CSBG funds but limiting a community's
ability to access HUD dollars. Community Action Agencies (CAAs), which
are the primary local recipients of CSBG funding, are directly involved
in housing and homelessness services. In several communities, CAAs lead
the Continuum of Care (CoC). CoCs coordinate local homeless service
providers and the community's McKinney-Vento Homeless Assistance Grant
application process with the Department of Housing and Urban
Development. In the fiscal year 2004 CSBG Information Systems report
published by the HHS, CAAs reported administering $207.4 million in
Section 8 vouchers, $30 million in Section 202 services \2\ and $271.1
million in other HUD programs which includes homeless program
funding.\3\
---------------------------------------------------------------------------
\2\ Section 202 is dedicated to housing from elderly and disabled
individuals and families.
\3\ U.S. Department of Health and Human Services, Administration of
Children and Families. The Community Services Block Grant Fiscal Year
2004 Statistical Report. Prepared by the National Association for State
Community Services Programs.
---------------------------------------------------------------------------
Foster Youth Education and Training Vouchers (ETV)
The Alliance recommends that Congress appropriate $60 million in
ETV for youth exiting foster care under the Safe and Stable Families
Program. The ETV program offers funds to foster youth and former foster
youth to enable them to attend colleges, universities and vocational
training institutions. Students may receive up to $5000 a year for
college or vocational training education. The funds may be used for
tuition, books, housing, or other qualified living expenses. Given the
large number of people experiencing homelessness who have a foster care
history, it is important to provide assistance such as ETV to stabilize
youth and prevent homelessness.
Community Mental Health Performance Partnership Block Grant
(MHBG)
The Alliance recommends that Congress appropriate $482.9 million
for the MHBG. The MHBG provides flexible funding to States to provide
mental health services. Ending homelessness requires Federal, State,
and local partnerships. Additional mental health funds will give States
the resources to improve their mental health system and serve all
people with mental health disorders better, including homeless
populations. For example, MHBG funds can be used to pay for services
linked to housing for homeless people, thereby meeting the match
requirements for projects funded through Shelter Plus Care or the
Supportive Housing Program.
Substance Abuse Prevention and Treatment Block Grant (SAPT)
The Alliance recommends that Congress appropriate $1.858 billion
for the SAPT Block Grant. The SAPT Block Grant is the primary source of
Federal funding for substance abuse treatment and prevention for many
low-income individuals, including those experiencing homelessness.
Studies have shown that half of all people experiencing homelessness
have a diagnosable substance use disorder. States need more resources
to implement proven treatment strategies and work with housing
providers to keep homeless, especially chronically homeless populations
stably housed.

CONCLUSION

Homelessness is not inevitable. As communities implement plans to
end homelessness, they are struggling to find funding for the services
homeless and formerly homeless clients need to maintain housing. The
Federal investments in mental health services, substance abuse
treatment, employment training, youth housing, and case management
discussed above will help communities create stable housing programs
and change social systems which will end homelessness for millions of
Americans.
______

Prepared Statement of the National Alliance for Eye and Vision Research
(NAEVR)

EXECUTIVE SUMMARY

NAEVR requests fiscal year 2009 NIH funding at $31 billion, or a
6.6 percent increase over fiscal year 2008, to balance the biomedical
inflation rate of 3.6 percent and to begin to restore NIH's purchasing
power. Although NAEVR commends the congressional leadership's actions
to significantly increase NIH funding above the Administration's budget
request in fiscal year 2008 appropriations, the net 0.46 percent
increase meant a net loss in NIH purchasing power. For 5 consecutive
years, NIH funding has failed to keep pace with the biomedical
inflation rate and NIH has lost more than 10 percent of its purchasing
power. The administration's fiscal year 2009 budget, which proposes to
freeze the NIH budget at the fiscal year 2008 level, threatens to
further hinder the momentum of discovery leading to treatments that are
saving lives--as well as restoring the quality of life--and maintaining
the Nation's competitive edge in medical research. Secure and
consistent funding for health and scientific research must be part of
the nation's long-term strategies for sustained economic growth. NIH is
a world-leading institution and must be adequately funded so that its
research can reduce healthcare costs, increase productivity, improve
quality of life, and ensure our Nation's global competitiveness.
NAEVR requests that Congress make vision health a top priority by
funding the NEI at $711 million in fiscal year 2009, or a 6.6 percent
increase over fiscal year 2008. The NEI was flat funded in fiscal year
2008, meaning that over the past five funding cycles it has lost 18
percent of its purchasing power, reducing the number of grants by 160,
which threatens its impressive record of breakthroughs in basic and
clinical research that have resulted in treatments and therapies to
save and restore vision, as well as to prevent eye disease. Vision
impairment/eye disease is a growing, major public health problem that
disproportionately affects the aging and minority populations, costing
the United States $68 billion annually in direct and societal costs,
let alone reduced independence and quality of life. Adequately funding
the NEI is a cost-effective investment in our nation's health, as it
can delay, save, and prevent expenditures, especially to the Medicare
and Medicaid programs.
Fiscal year 2009 NEI funding at $711 million enables it to lead
collaborative research reflecting the new paradigm of 21st
century healthcare that is predictive, preemptive,
personazlied, and participatory
NEI research addresses the NIH's overall major health challenges as
set forth by NIH Director Elias Zerhouni, M.D.: an aging population;
health disparities; the shift from acute to chronic diseases; and the
co-morbid conditions associated with chronic diseases (e.g., diabetic
retinopathy as a result of the epidemic of diabetes). NEI research
responds to Dr. Zerhouni's vision for NIH research that is
collaborative and cost-effective and meets the 21st century
``P4Medicine'' paradigm of predictive, preemptive, personalized, and
participatory research and clinical practice. For example:
--One-quarter of all genes identified to date through NEI's
collaboration with the Human Genome Project is associated with
eye disease, such as age-related macular degeneration (AMD),
retinitis pigmentosa (RP), and glaucoma. NEI-funded researchers
have discovered gene variants strongly associated with an
individual's risk of developing AMD, the leading cause of
blindness in older Americans. These variants, responsible for
about 60 percent of the cases of AMD, are associated with the
body's inflammatory response and may relate to other
inflammation-associated diseases, such as Alzheimer's and
Parkinson's.
--NEI is currently conducting the second phase of its Age-Related Eye
Disease Study (AREDS), which follows up on initial findings
that high levels of dietary zinc and antioxidant vitamins
(Vitamins C, E and beta-carotene) are effective in reducing
vision loss in people at high risk for developing advanced
AMD--by a magnitude of 25 percent. NEI estimates that 1.3
million Americans would develop advanced AMD if no treatment
was given, and if all individuals at risk engaged in the AREDS
supplement regimen, more than 300,000 of them would avoid
advanced AMD and any associated vision loss during the next 5
years.
--NEI's collaborative research into factors that promote or inhibit
new blood vessel growth has resulted in the first generation of
ophthalmic drugs approved by the Food and Drug Administration
(FDA) to inhibit abnormal blood vessel growth in ``wet'' AMD,
thereby stabilizing and restoring vision, and NEI's Diabetic
Retinopathy Clinical Research (DRCR) Network is further
evaluating these drugs for treatment of macular edema
associated with diabetic retinopathy (DR). In March 2008, NEI-
funded researchers announced that damage from both AMD and DR
was prevented and even reversed when the protein Robo4 was
activated in mouse models that simulate the two diseases. Robo4
treated and prevented the diseases by inhibiting abnormal blood
vessel growth and by stabilizing blood vessels to prevent
leakage. Since this ``Robo4 Pathway'' research used animal
models from drug development, the time required to test this
approach in humans could be shortened, expediting approvals for
new therapies.
These examples primarily reflect NEI's trans-Institute research
within NIH. The NEI has also collaborated with other Department of
Health and Human Services (DHHS) agencies, specifically to share the
results of its basic and clinical research which may impact the product
approval and reimbursement processes. For example:
--In a March 2008 meeting, NEI collaborated with FDA's drug and
device Centers to consider the appropriateness of new clinical
endpoints in glaucoma clinical trials. Advances in visual
imaging technologies--many of which emerged from collaborative
research between the NEI and the National Institute of
Biomedical Imaging and Bioengineering (NIBIB)--have enabled
researchers to better detect structural changes in the nerve
fiber layer of the retina and contours of the optic nerve head.
These structural changes could potentially be used as a direct
endpoint in a clinical trial, rather than a surrogate endpoint
such as elevated intra-ocular pressure, when appropriately
correlated to functional changes in vision to assure clinical
significance of a new therapy. This meeting, which followed a
November 2006 joint NEI-FDA meeting on clinical endpoints in
AMD and DR clinical trials, represents the cost-effectiveness
of NEI funding, as its research results may ultimately shorten
the time and cost associated with clinical trials and
facilitate approval of new diagnostics/therapies.
--In collaboration with the Centers for Medicare and Medicaid
Services (CMS), NEI has launched the Comparison of AMD
Treatments Trial (CATT), a comparative effectiveness study of
the two drugs used to block growth of abnormal blood vessels in
patients with the ``wet'' form of AMD. NEI's collaboration with
CMS could guide clinical practice and reduce costs to the
Medicare program.
The NEI's diminished purchasing power jeopardizes its ability to follow
up on research breakthroughs from past investment
Congress must adequately fund NEI so it can initiate promising new
research, pursue results that have emerged from previous breakthroughs,
and offer up its ``fair share'' of funding in its extensive
collaborations. The number of NEI grants has declined by 160 over the
past 5 years, from 1,214 in fiscal year 2004 to 1,054 in fiscal year
2008, representing myriad ``lost opportunities''--any one of which
could have been the key to curing eye disease or restoring vision.
Examples of such lost opportunities include:
--Ocular gene therapy holds great promise for retinal degenerative
diseases, in which nearly 200 gene defects have been
implicated. Investigators supported by NEI and private-funding
organization Foundation Fighting Blindness (FFB) have begun
human clinical trials of a gene therapy to treat Leber
Congenital Amaurosis (LCA), a rapid retinal degeneration that
blinds infants in the first year of life. Previous research has
restored vision in dogs with LCA, and the results of the human
clinical trials are forthcoming. Although the NEI could expand
this program to target more diseases, current budget realities
limit further research.
--Promising protocols proposed within the Diabetic Retinopathy
Clinical Research Network will not be funded. The DRCR Network
is a large, multi-center study that engages ophthalmologists
and optometrists, many in community health centers, in basic
and clinical research. Past NEI diabetes networks developed
laser treatments for DR that save $1.6 billion annually in
federal disability payments.
--NEI funding for epidemiological studies is already limited, which
jeopardizes future research into the basis/progression of eye
disease in additional ethic populations, such as Asian and
Native Americans. Past NEI studies identified a three-fold
greater risk of glaucoma in African Americans and glaucoma as
the leading cause of irreversible vision loss in African
Americans and Hispanics.
--NEI will not be able to fund proposed new Clinical Research
Networks for AMD and for neuro-ophthalmic disorders. The latter
could assist in understanding visual disorders associated with
Traumatic Brain Injuries (TBI), especially those currently
being incurred in record numbers by soldiers in Iraq and
Afghanistan.
NEI research into other significant eye disease programs such as
cataract will be threatened, along with quality of life research
programs into low vision and chronic dry eye. This occurs at a time
when the U.S. Census cites significant demographic trends that will
increase the public health problem of vision impairment and eye
disease, such as the first wave of 78 million Baby Boomers celebrating
their 65th birthday in 2010, with about 10,000 Americans turning 65
each day for 18 years afterward.
Eye disease is a major public health problem increasing health costs,
reducing productivity, and diminishing quality of life
The 2000 U.S. Census reported that more than 119 million people in
the United States were age 40 or older--he population most at risk for
an age-related eye disease. The NEI estimates that more than 38 million
Americans age 40 and older currently experience blindness, low vision
or an age-related eye disease such as AMD, glaucoma, diabetic
retinopathy, or cataracts. This is expected to grow to more than 50
million Americans by year 2020. Although the current annual cost of
vision impairment and eye disease to the United States is $68 billion,
it does not fully quantify the impact of direct healthcare costs, lost
productivity, reduced independence, diminished quality of life,
increased depression, and accelerated mortality. This presents a major
public health problem and financial challenge to the public and private
sectors.
In public opinion polls over the past 40 years, Americans have
consistently identified fear of vision loss as second only to fear of
cancer. As recently as March 2008, the NEI's Survey of Public
Knowledge, Attitudes, and Practices Related to Eye Health and Disease
reported that 71 percent of respondents indicated that a loss of their
eyesight would rate as a ``10'' on a scale of 1 to 10, meaning that it
would have the greatest impact on their day-to-day life. As a result,
federal funding for the NEI is a vital and cost-effective investment in
the health, and vision health, of our nation as the treatments and
therapies emerging from research can preserve and restore vision.
NAEVR urges fiscal year 2009 NIH and NEI funding at $31 billion and
$711 million, respectively.
______

Prepared Statement of the National Alliance on Mental Illness

Chairman Harkin, Senator Specter and members of the subcommittee, I
am Anand Pandya, MD, President of the National Alliance on Mental
Illness (NAMI). I am pleased today to offer NAMI's views on the
subcommittee's upcoming fiscal year 2009 bill. With 210,000 members,
NAMI is the Nation's largest grassroots organization representing
persons with serious brain disorders and their families. Through our
1,200 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.
The cost of mental illness to our Nation is enormous. It is
estimated that the direct and indirect cost of untreated mental illness
to our Nation exceeds $82 billion annually. However, these direct and
indirect costs do not measure the substantial and growing burden that
is imposed on ``default'' systems that are too often responsible for
serving children and adults with mental illness who lack access to
treatment. These costs fall most heavily on the criminal justice and
corrections systems, emergency rooms, schools, families and homeless
shelters. Moreover, these costs are not only financial, but also human
in terms of lost productivity, lives lost to suicide, and broken
families. Investment in mental illness research and services are--in
NAMI's view--the highest priority for our Nation and this subcommittee.

NATIONAL INSTITUTE OF MENTAL HEALTH (NIMH) RESEARCH FUNDING

The National Institute of Mental Health (NIMH) is the only Federal
agency whose main objective is to fund biomedical research on serious
mental illnesses. Through research, NIMH and the scientists it supports
seek to gain an understanding of the fundamental mechanisms underlying
illnesses that obstruct thought, emotion, and behavior and an
understanding of what goes wrong in the brain in mental illness. NIMH
strives, at the same time, to hasten the translation of this basic
knowledge into clinical research that will lead to better treatments
and ultimately be effective in our complex world with its diverse
populations and evolving health care systems.
For fiscal year 2009, the President is proposing $1.407 billion for
scientific and clinical research at the National Institute of Mental
Health (NIMH). This is only a $2 million increase above the fiscal year
2008 level, far below the level needed to keep pace with medical
research inflation. Since 2003, the end of the 5-year effort by this
subcommittee to double biomedical research finding, the NIH has lost
nearly 15 percent of its purchasing power as a result of flat budgets.
If this trend is not reversed, the consequences for advancing mental
illness research will be devastating. If NIMH funding continues to lag,
we will lose the chance to define the individualized strategies and
future medication options that this vital research heralds. A third
generation of antipsychotic medication for schizophrenia, stronger
antidepressant medication for depression and treatment strategies for
bipolar disorder that improve long-term outcomes, are crucially
important to those who suffer and will not be realized without further
support from the Federal Government.
Further, we will be unable to fund in the United States whole
genome studies for serious mental illness which could transform the
understanding of the causes and risk factors for these devastating
illnesses and open new avenues for effective treatment. Likewise, we
will be unable to advance schizophrenia and bipolar research progress,
for example, understanding if early intervention with medication,
therapy and rehabilitation will prevent disability or morbidity in
persons with new onset schizophrenia. Finally, continued flat funding
for NIMH will prevent us from addressing the epidemic of suicide in
this country, including a substantial number of our young people who
die or are disabled before their lives have truly started and the
elderly who are cheated from their retirement years.
For fiscal year 2009, NAMI supports the recommendations of the Ad
Hoc Group on Medical Research and the Mental Health Liaison Group for a
6.5 percent increase for the overall NIH budget and a similar increase
for the NIMH. This would boost NIMH funding to $1.499 billion and allow
the agency to regain lost purchasing power and keep pace with the
Biomedical Research and Development Price Index.

REDEFINING NIMH TO ITS MISSION

NAMI applauds NIMH's efforts to re-align the Institute along 3 core
principles: relevance, traction, and innovation.
--Relevance refers to relevance to the mission. NIMH should continue
its strong support of basic science, but as the NAMHC workgroup
recommends in its report (http://www.nimh.nih.gov/council/
brainBehavioralScience.cfm) some research areas are more
relevant than others.
--Traction refers to the capacity for rapid progress in research
areas where new tools, such as 2-photon imaging, yield
definitive answers to long-standing questions.
--Innovation is often endangered during periods of limited budget
growth. This work is highly relevant and NIMH is gaining
traction, but unless a priority is placed on such ``discovery''
science, this unprecedented opportunity for innovation may not
receive the support it deserves.
It is critical for us to move beyond the current universe of
palliative treatments for serious mental illness. Even with optimal
care, some children and adults living with serious mental illness will
not be able to achieve recovery (as defined as permanent remission). As
NIMH Director Dr. Tom Insel has noted, consumers and families need
rapid, effective treatments that target the core pathophysiology of
serious mental illnesses and the tools for early detection. Mental
illness research can develop new diagnostic markers and treatments, but
this will require defining the pathophysiology of these illnesses. NIMH
now has the research tools necessary. Now is the time to set an
ambitious goal of finding cures to these extremely disabling illnesses.
However, NIMH must have the resources it needs to support this critical
research agenda.

FUNDING FOR PROGRAMS AT SAMHSA'S CENTER FOR MENTAL HEALTH SERVICES
(CMHS)

The Center for Mental Health Services (CMHS)--part of the Substance
Abuse and Mental Health Services Administration (SAMHSA)--is the
principal Federal agency engaged in support for State and local public
mental health systems. Through its programs CMHS provides flexible
funding for the States and conducts service demonstrations to help
States move toward adoption of evidence-based practice. Overall, the
President is proposing a $209 reduction for the SAMHSA--dropping
funding down to $3.025 billion for fiscal year 2009. Within CMHS,
funding would be reduced by $144 million, largely through reductions
and terminations of a number of demonstration and technical assistance
programs.
The President's request for major activities at CMHS for fiscal
year 2009 is as follows:
--The Mental Health Block Grant--Proposed for a current freeze at
$421 million,
--The PATH Homeless Formula Grant--$60 million, a $7 million increase
above current levels,
--Children's Mental Health--$114 million, a $12 million increase
above current levels, and
--PAIMI Protection & Advocacy--$34 million, a $1 million reduction.
Beyond seeking to impose level funding for these SAMHSA programs,
the President's budget seeks $144 million in overall reductions to
Programs of Regional and National Significance (PRNS) at CMHS, dropping
the fiscal year 2008 appropriation from $299.3 million, down to $155.3
million. PRNS are largely demonstration, targeted capacity expansion
and other discretionary activities at the agency. Most of these
reductions would come through terminating research demonstration
programs and technical assistance programs.
Among the activities within the PRNS account that are targeted for
reductions are:
--Mental Health Transformation State Incentive Grants (SIGs)--The
budget proposes no future SIG grants, a $26 million reduction,
--Mental Health System Transformation--A $20.8 million program
proposed for elimination,
--Garrett Lee Smith Suicide Prevention State Grants--The budget
proposes an $11.7 million reduction, from $29.5 million, down
to $17.8 million,
--Homelessness Prevention and Service Demonstrations--Proposed for a
an $10.6 million cut, from $13.6 million down to $2.8 million,
--Seclusion and Restrain Technical Assistance--$2.4 million proposed
for elimination,
--Criminal Justice and Juvenile Justice Grants--A $6.68 million
activity for fiscal year 2008, proposed for a $2.8 million
reduction, and
--Older Adults--A $4.8 million program proposed for elimination.
NAMI urges the subcommittee to restore these cuts to the CMHS PRNS
program for fiscal year 2009. These targeted capacity expansion and
service demonstration initiatives are critical for the agency to
continue its role as a leader in promoting replication of effective
services that reach children and adults with serious mental illness.

SUICIDE PREVENTION ACTIVITIES AT SAMHSA

NAMI is especially troubled by the President's proposal to cut
funding for suicide prevention activities under the Garrett Lee Smith
Act. Each year, over 31,000 Americans die by suicide and over 1.4
million make a suicide attempt. Suicide deaths consistently outnumber
homicide deaths by a margin of three to two. The statistics are
troubling for our Nation:
--In 2003, twice as many Americans died from suicide than from HIV/
AIDS,
--Suicide is the third leading cause of death for those between the
ages of 10 and 24 and the second leading cause of death for
American college students,
--While the elderly comprise only 12 percent of the population, they
account for about 18 percent of our Nation's suicides,
--Research has shown that more than 90 percent of people who die by
suicide have a mental illness and/or substance abuse disorder.
Congress must continue to invest in effective suicide prevention
strategies. NAMI urges this subcommittee to provide full funding for
suicide prevention activities under the Garrett Lee Smith Act for
fiscal year 2009--$40 million.

CHRONIC HOMELESSNESS AND MENTAL ILLNESS

Together, Congress and the President have set a goal of ending
chronic homelessness by 2012. Ninety States and local governments have
responded to this challenge by creating plans to end homelessness, and
130 more States and local governments are in the process of developing
similar plans. To address chronic homelessness, completed plans call
for developing 80,000 new permanent supportive housing units. This will
require creating 16,000 units of new permanent supportive housing for
chronically homeless people in each of the next 5 years. Federal
funding at the level of $5,000 per unit will leverage other resources
to provide the comprehensive services needed to help chronically
homeless people achieve housing stability and pursue recovery from
mental illness and substance abuse problems.
Over the course of a year, between 200,000 and 250,000 people
experience long term or chronic homelessness. They are homeless for
long periods of time or repeatedly, have one or more disabilities, and
often cycle between homeless shelters, the streets, mental health
facilities, emergency rooms, hospitals, and jails. The public cost for
their care is extremely high, and their outcomes are very poor. The
current funding level of SAMHSA homeless programs is $56 million. The
President's fiscal year 2009 proposed budget recommended a $20 million
funding cut to this total. NAMI urges an increase of $44 million for
the Grants for the Benefit of Homeless Individuals (GBHI) and Treatment
Systems for Homeless programs at SAMHSA, boosting funding to $100
million for fiscal year 2009.

THE SOCIAL SECURITY DISABILITY CLAIMS AND APPEALS BACKLOG CRISIS MUST
BE ADDRESSED

Mr. Chairman, people with mental illness and other severe
disabilities have been bearing the brunt of the backlog crisis for
disability claims and appeals at Social Security. Behind the numbers
are individuals with disabilities whose lives have unraveled while
waiting for decisions--families are torn apart; homes are lost; medical
conditions deteriorate; once stable financial security crumbles; and
many individuals die. NAMI congratulates this subcommittee on the
progress made for fiscal year 2008 with the appropriation for SSA's
Limitation on Administrative Expenses (LAE), boosting it to $9.747
billion. This amount was $148 million above the President's request and
was the first time in years that the agency has received at least the
President's request. While the fiscal year 2008 appropriation will
allow the agency to hire some new staff and to reduce processing times,
it will not be adequate to fully restore the agency's ability to carry
out its mandated services.
The President's request for the SSA fiscal year 2009 LAE is
encouraging, but does not go far enough to put the agency on a clear
path to provide its mandated services at a level expected by the
American public. In order for SSA to meet its responsibilities, it is
projected that the agency needs a minimum of $11.0 billion for its
fiscal year 2009 administrative budget. This amount will allow the
agency to not only significantly reduce the backlog, but also keep
local offices open, provide adequate telephone services to the public,
and maintain the integrity of its programs by performing more
continuing disability reviews and SSI redeterminations.
______

Prepared Statement of the National Alliance of State and Territorial
AIDS Directors

The National Alliance of State and Territorial AIDS Directors
(NASTAD), whose members are responsible for administering state HIV/
AIDS prevention and care programs nationwide, respectfully submits
testimony for the record regarding federal funding for federal HIV/AIDS
and adult hepatitis programs in the fiscal year 2009 Labor, HHS and
Education Appropriations legislation. NASTAD appreciates the
Committee's past support for these important public health programs.
As you craft the fiscal year 2009 Labor-HHS-Education
Appropriations legislation, we urge you to consider the following
critical funding needs of HIV/AIDS, STD and viral hepatitis programs:
--$1.4 billion for the Ryan White Part B Program, including $496.2
million for the Part B base and $929 million for the AIDS Drug
Assistance Program (ADAP);
--$1.3 billion for CDC's HIV/AIDS Prevention Program, including an
additional $31 million to restore cuts to the state and local
health department cooperative agreements since fiscal year
2003, an additional $35 million to shore up state and local
HIV/AIDS surveillance systems, and $45 million for the
continuation of CDC's HIV Testing Initiative targeting
communities of color;
--$50 million for CDC's Viral Hepatitis Prevention Program, including
a doubling of resources for the Adult Viral Hepatitis
Prevention Coordinator Program to $10 million.
--$20 million for hepatitis B vaccination for high-risk adults
through the Section 317 Vaccine Program;
--$167 million for CDC's STD Prevention Program for prevention,
treatment and surveillance cooperative agreements with state
and local health departments; and
--$610 million for the Minority AIDS Initiative to enhance capacity
in communities of color.

HIV/AIDS CARE AND TREATMENT PROGRAMS

NASTAD respectfully requests a minimum increase of $230 million in
fiscal year 2009 for state Ryan White Part B grants, including an
increase of at least $95 million for the Part B Base and at least $135
million for AIDS Drug Assistance Programs (ADAPs). The President's
budget cuts Part B programs $6 million for fiscal year 2009. In fiscal
year 2008, Base programs received a cut of $5 million. These funds
provide care and support services across the United States and are
necessary to ensure there are not large funding shifts resulting from
formula changes in the reauthorized law.
While only one state currently has a waiting list to receive ADAP
services, the present fiscal condition remains fragile and is not
guaranteed beyond fiscal year 2007. The President's budget included an
increase of $20.2 million, which is insufficient to meet continuing
demand for these programs. The elimination of waiting lists is largely
due to state funding increases, $39.4 million in fiscal year 2007 ADAP
Supplemental grants, transfers of Part B Base funding into ADAP, and
program savings from the Medicare Part D Prescription Drug Benefit.
Shifts in funding as a result of reauthorization of the Ryan White
Program and one-time additional funding to Part B in fiscal year 2007
render the fiscal future of ADAPs uncertain. Additionally, CDC
estimates that their newly implemented HIV testing initiative will find
20,000 new infections over the next year. Two new therapies were
approved in 2007 and at least one will be approved in 2008. ADAPs will
be adding these to their formularies thus increasing costs.

HIV/AIDS PREVENTION AND SURVEILLANCE PROGRAMS

NASTAD respectfully requests a funding increase of $608 million for
total funding of $1.3 billion for CDC's HIV prevention and surveillance
programs. The President's budget cuts CDC's HIV prevention and
surveillance programs by $1 million. CDC is on the verge or releasing
revised estimates of HIV incidence that will show that there have been
more new infections each year than previously thought. Funding has not
kept pace and has in fact been cut since fiscal year 2003. State and
local HIV prevention cooperative agreements have been cut by $26
million between fiscal year 2003 and fiscal year 2007. Due to the
rescission, fiscal year 2008 cooperative agreements may receive further
cuts of $5.2 million. In fiscal year 2007, CDC awarded $35 million to
18 states and 5 cities to support routine testing in clinical settings
particularly targeted to settings that see a large number of African
Americans. NASTAD requests the maintenance of these grants to continue
the testing initiative. Additionally, core HIV/AIDS surveillance
funding has eroded over the last decade, while the importance of this
data has become paramount for targeting prevention efforts and
directing Ryan White resources. $35 million is needed to shore up state
and local HIV/AIDS surveillance systems.
In addition, we urge you not to fund the Early Diagnosis Grant
Program in Section 209 of the Ryan White Treatment Modernization Act of
2006. Funds should not be directed to fund this provision as it
redirects scarce HIV prevention resources away from the ever shrinking
state and local prevention cooperative agreements. At a minimum, the
impact and scope of this provision should be reduced.
The Nation's prevention efforts must match our commitment to the
care and treatment of infected individuals. State and local public
health departments know what to do to prevent new infections, they just
need the resources. First and foremost we must address the devastating
impact on racial and ethnic minority communities. We must expand
outreach and HIV testing efforts targeting high-risk populations
including racial and ethnic minority communities, young gay men of
color, substance users, women and youth. But, testing alone can never
end the epidemic. All tools in the prevention arsenal must be
supported. Additional resources must be directed to build capacity and
provide technical assistance to enable community-based organizations
and health care providers to implement evidence-based behavior change
interventions, ensure fiscal responsibility and refer partners of HIV-
positive individuals to counseling and testing services.

VIRAL HEPATITIS PREVENTION PROGRAMS

NASTAD respectfully requests an increase of $36.4 million for a
total of $50 million in fiscal year 2009 for the CDC's Division of
Viral Hepatitis (DVH) to enable state and local health departments to
provide basic core public health services. DVH currently receives $17.6
million to address chronic viral hepatitis B and C impacting 6.2
million Americans. This is $7.4 million less than its peak funding of
$25 million in fiscal year 2001. The President's budget cuts DVH
funding by $80,000. Of the DVH funding, $5.2 million is used to fund
the Adult Viral Hepatitis Coordinator Program with an average award to
states of $90,000. The coordinator position receives precious little
above personnel costs, leaving little to no money for the provision of
public health services including public education, hepatitis
counseling, testing, and hepatitis A and B vaccine. In addition, there
are no funds for surveillance of chronic viral hepatitis, which would
allow states to better target their limited resources. Given the recent
hepatitis public health crises in Nevada and New York, the government
has a choice--invest in prevention now or wait until public systems are
overwhelmed by a lack of infrastructure to address future outbreaks.
The greatest remaining challenge for hepatitis A and B prevention
is the vaccination of high-risk adults. High-risk adults account for
more than 75 percent of all new cases of hepatitis B infection each
year and annually result in an estimated $658 million in medical costs
and lost wages. In fiscal year 2007, CDC allowed states to use $20
million of 317 Vaccine funds to vaccinate high risk adults for
hepatitis B. States are integrating vaccination into service programs
for persons with risk factors for infection (e.g., STD clinics, HIV
counseling and testing sites, correctional facilities and drug
treatment clinics). By targeting high-risk adults, including those with
hepatitis C, for vaccination, the gap between children and adults who
have not benefited from routine childhood immunization programs can be
bridged. NASTAD requests a continuation of the $20 million in Section
317 Vaccine funds in fiscal year 2009 for hepatitis B vaccination for
high-risk adults.

STD PREVENTION PROGRAMS

NASTAD supports a minimum increase of $15 million for a total of
$167 million in fiscal year 2009 for STD prevention, treatment and
surveillance activities undertaken by state and local health
departments. The President's budget cut STD prevention program funding
by $680,000. STD prevention programs at CDC have been cut or flat-
funded since fiscal year 2003 while the number of persons infected
continues to climb. The United States has the unwanted distinction of
having the highest rates of STDs of all industrial nations. In 2006 for
the second consecutive year, the United States experienced record
increases of the three leading STDs--Chlamydia (5.6 percent), Gonorrhea
(5.5 percent), and Syphilis (13.8 percent).

MINORITY AIDS INITIATIVE

NASTAD also supports a $218 million increase for a total of $610
million for the Minority AIDS Initiative (MAI) in fiscal year 2009. The
MAI was cut in fiscal year 2008. The President's budget flat funds
these important programs. The MAI provides targeted resources to
address the HIV/AIDS epidemic in hard-hit communities of color. The
data from CDC on the disproportionate impact on African Americans
continues to be alarming. Support for the MAI along with the
traditional funding streams that serve these populations is essential.
As you craft the fiscal year 2009 Labor-HHS appropriations bill, we
ask that you consider all of these critical funding needs. It is
essential that the United States continue to demonstrate its commitment
to fighting the ongoing domestic and global HIV/AIDS, viral hepatitis,
and STD epidemics. The National Alliance of State and Territorial AIDS
Directors thank the Chairman, Ranking Member and members of the
Subcommittee, for their thoughtful consideration of our
recommendations.
______

Prepared Statement of the National Association of County Behavioral
Health and Developmental Disability Directors

Chairman Harkin, ranking member Specter, and members of the
subcommittee, on behalf of the National Association of County
Behavioral Health and Developmental Disability Directors (NACBHDD), we
thank you for your leadership on issues related to mental illness,
addictions and developmental disabilities. We are pleased to offer the
following recommendations and highlight concerns regarding fiscal year
2009 funding.
The National Association of County Behavioral Health and
Developmental Disability Directors (NACBHDD) is an organization based
in Washington, D.C. active on a number of fronts, including policy
development, advocacy and information dissemination on best practices
to its members. As an affiliate of the National Association of Counties
(NACo), NACBHDD members are a part of the health care safety net that
contributes to local systems of care for millions of Americans. NACBHDD
members include county and city governments and other local authorities
with responsibility for assuring that essential mental health,
developmental disabilities and substance use disorder services are
provided to vulnerable and often disabled residents.
Recent financial changes at the Federal level regarding Medicaid
are pressuring States and localities to cut other health and social
services to cover the additional costs of essential services for which
Federal reimbursement is no longer available. While Medicaid is an
integral component to local systems of care and ensures that arrays of
appropriate services are available to the right person at the right
time; other Federal, State and local funds are essential to funding
these public systems. The coordination of these dollars assists in the
delivery of effective community based services as well as transitioning
individuals from institutional settings. Discretionary Federal funding
is pivotal to the Federal-State-local parternships that contribute to
the financial foundation of vital local services. Without adequate
funding, these activities will not be available to support some of our
most vulnerable citizens.
NACBHDD recommendations and concerns regarding mental health,
addictions and developmental disabilities funding priorities follow.
substance abuse prevention and treatment (sapt) block grant
NACBHDD recommends $1,858.7 million for fiscal year 2009--an
increase of $100 million over fiscal year 2008 and $80 million over the
President's request. The SAPT Block Grant enables States and localities
to address the unique needs of their communities. In addition, this
block grant is crucial funding for public addictions systems and
provides the capacity for the bulk of prevention and treatment
services.

CENTER FOR SUBSTANCE ABUSE TREATMENT (CSAT)

NACBHDD is concerned with the proposed cut of $63 million to CSAT
programs and recommends $420 million in fiscal year 2009. The
President's request would eliminate programs that provide recovery
services, State service improvements, program coordination and
evaluation and strengthening treatment access and retention. In
addition, programs that target pregnant and postpartum women and
children and families with substance use disorders would no longer be
available.
Other CSAT programs would be significantly reduced in the
President's proposed budget. The Opioid Treatment Programs/Regulatory
Activities, Targeted Capacity Expansion (TCE), Services Accountability,
Addiction Technology Transfer Centers (ATTCs), Treatment Systems for
the Homeless that include programs important to local substance abuse
authorities would all be affected.

CENTER FOR SUBSTANCE ABUSE PREVENTION (CSAP)

NACBHDD recommends $215 million in fiscal year 2009. This
represents an increase of $20.9 million compared to fiscal year 2008
and an increase of $56.9 million over the President's request. The
proposed budget would cut CSAP by $36 million allowing a number of
programs within this center to be significantly restricted. Of note,
the Strategic Prevention Framework State Incentive Grant is proposed to
be funded at $95,389,000 a cut of $9,318,000 from fiscal year 2008
level. In addition, the Centers for the Application of Prevention
Technologies (CAPTs) are proposed to be funded at $4,381,000, a cut of
$7,656,000 from fiscal year 2008 level. These two programs allow for
much needed prevention programs at the local level. Other CSAP programs
which are slated for elimination include the Sober Truth on Preventing
Uderage Drinking (STOP Act) and Evidence Based Practices. The
Methamphetamine Prevention program and Program Coordination/Data
Coordination and Consolidation Center would receive cuts in funding as
well, hindering their effectiveness.

CENTER FOR MENTAL HEALTH SERVICES (CMHS)

Community Mental Health Services Performance Partnership Block Grant
NACBHDD recommends $482.9 million for the fiscal year 2009 budget,
an increase of $61.9 million from the fiscal year 2008 budget and from
the President's fiscal year 2009 request. The Community Mental Health
Services Block Grant is an integral Federal funding source that
supports community based mental health services.
Childrens Mental Health and Homelessness Programs
While the President's fiscal year 2009 budget did request increased
funding for the Children's Mental Health Services Program and Projects
for Assistance in Transition from Homelessness (PATH) Program, NACBHDD
recommends $117.3 million and $61.1 million respectively for these
programs. Adequate funding is essential to create systems of care
focused on community based services for children and their families.
Additionally, PATH programs allow for local solutions to assisting
individuals who are homeless and have a mental illness and/or substance
use disorder.
Programs of Regional and National Significance (PRNS)
NACBHDD recommends $343.3 million for the fiscal year 2009 budget,
an increase of $44.0 million above the fiscal year 2008 budget. NACBHDD
is concerned with the President's request for the drastic $144 million
decrease in funding to this program. Programs that prevent youth
violence, suicide, and address post traumatice stress disorder would be
severely restricted. Jail diversion grants are also slated for reduced
funding. These dollars are essential in assisting communities to
provide support and organization to appropriately divert individuals
with mental illness away from jails and prisons and ensure access to
treatment and services in the community.
NACBHDD is particularly concerned that programs targeted for
seniors, community technical assistance centers, consumer and family
network grants would be eliminated. Additionally, the President's
fiscal year 2009 request would terminate State incentive grants. These
grants offer flexibility in planning and coordination among Federal,
State, and local entities to create comprehensive plans and enhance
existing resources to deliver quality, evidence based services in
communities.

NATIONAL INSTITUTES OF HEALTH (NIH)

NACBHDD supports the furthering of research in the fields of mental
health, substance use disorders and developmental disabilities. Our
following recommendations for fiscal year 2009 appropriations:
--National Institute of Mental Health (NIMH)--$1,498.6 million
--National Institute on Drug Abuse (NIDA)--$1,067.7 million
--National Institute on Alcohol Abuse and Alcoholism (NIAAA)--$465.5
million
--National Institute of Child Health and Human Development (NICHD)--
$1,341 million

DEVELOPMENTAL DISABILITIES

NACBHDD supports the following recommendations for funding to
ensure individuals with developmental disabilities receive services and
supports in the communities in which they live. A number of departments
and programs touch the lives of individuals with developmental
disabilities and continued Federal financial participation is
essential.

COMBATING AUTISM ACT

NACBHDD supports the President's funding request to expand
research, screening, intervention and education activities by the
National Institutes of Health (NIH), Centers for Disease Control and
Prevention (CDC) and the Health Resources and Services Administration
(HRSA) under the Combating Autism Act. This critical funding is
important for research into the causes of Autism, diagnosis, early
detection, prevention, services, supports, intervention and treatment
of autism spectrum disorder.

DEVELOPMENTAL DISABILITIES ACT

While the President's fiscal year 2009 budget request essentially
level funds these prograns, increased funding for these activities will
foster full integration and inlcusion in the community for individuals
with developmental disabilities. In particular, NACBHDD recommends
funding Councils on DD at $80 million, Protection and Advocacy Systems
at $45 million and University Centers for Excellence in DD at $41
million.

THE DEPARTMENT OF LABOR

Programs under the Workforce Investment Act are essential to ensure
individuals with developmental disabilities have access to employment
training and opportunities. We are concerned that most of the programs
have been requested to receive reduced funding in the President's
fiscal year 2009 budget request. Each program assists local
developmental disabilities authorities to ensure the individuals they
serve have opportunities in the workforce. NACBHDD recommends the
following:
--Adult Employment--$987.9 million
--Pilots, Demonstration, Research--$246 million
--Youth Activities--$1.1 billion
--One Stop Career Centers--$100 million
--Dislocated Worker Program--$1.6 billion
Further, the following programs within the Department of Labor
provide added support for job training and supports. NACBHDD recommends
funding for fiscal year 2009:
--Office of Disability Employment Policy--$47.5 million
--Community College Initiative/Community Based Job Training--$150
million
--Work Incentives Grants--$28 million
--Older Adult Community Service Employment Program (SCSEP)--$572
million
--Veterans' Employment and Training Services (VETS) Program--$233
million

DEPARTMENT OF HEALTH AND HUMAN SERVICES

NACBHDD recommends $850 million for the Maternal & Child Health
Block Grant. This program supports the health and welfare of mothers
and children to provide access to services and care for vulnerable
populations.

REHABILITATIVE SERVICES ADMINISTRATION

Rehabilitative service programs are particularly important to
assist local authorities to ensure individuals with developmental
disabilities receive a range of services to reach vocational outcomes.
Some programs received level funding requests while others were slated
for elimination. Of note, the Supported Employment State Grant program
would receive zero funding in the President's fiscal year 2009 budget.
These important grants help develop collaborative local programs that
offer supported employment services to individuals with developmental
disabilities.
NACBHDD thanks the committee for its continued support of programs
benefiting developmental disabilites, mental health and addictions
systems. We look forward to working with you on our Association's
priorities.
______

Prepared Statement of the National Association of County and City
Health Officials

SUMMARY

The proposed cuts in the fiscal year 2009 budget for the Centers
for Disease Control and Prevention (CDC) submitted by the President
continue a pattern of reduced funding for public health that gravely
worries the Nation's local health departments. The National Association
of County and City Health Officials (NACCHO) is particularly concerned
about two funding streams that directly benefit local health
departments, although the range of reductions in CDC's budget threaten
overall work in prevention that we fully support.
The President's budget requests $609 million in fiscal year 2009
for State and local capacity building for public health preparedness in
fiscal year 2009 and eliminates the Advanced Practice Center program.
This represents a cut of 18 percent from fiscal year 2008. The
Preventive Health and Health Services (PHHS) block grant program, the
other major source of CDC funding to health departments, received
funding of $97 million in fiscal year 2008 and is eliminated in the
President's budget. Taken together, these reductions will seriously
compromise the ability of the Nation's governmental public health
system to fulfill its mission of protecting and promoting health.
Local public health departments work every day on the front lines
to combat threats to the health of their communities. They cannot
afford substantial reductions in Federal support for their roles as
first responders to natural disasters, acts of bioterrorism and other
public health emergencies. Moreover, local public health departments
receive about 40 percent of the PHHS funds. In States where local
health departments rely exclusively on these funds to conduct
prevention programs for which no other sources of funding are
available, activities to reduce the burdens of preventable disease will
cease. Prevention is critical to slowing the astronomical growth in
chronic diseases like obesity and diabetes as well as protecting the
public from hazards such as lead poisoning and infectious diseases like
tuberculosis. An investment in prevention improves both length and
quality of life.
At a time when the Nation is engaged in urgent work to protect the
homeland from terrorists and natural disasters, as well as to stop the
growth in chronic disease, it is profoundly counterproductive and
irrational to reduce support for local programs that are the first line
of defense against the greatest threats to the health of communities.
NACCHO urges Congress to continue funding these two CDC programs at
levels no less than those in fiscal year 2005. Those levels are $919
million for State and local public health emergency preparedness and
$131 million for the Preventive Health and Health Services block grant.
NACCHO urges Congress to continue funding for pandemic flu preparedness
at $350 million for fiscal year 2009. In addition, NACCHO advocates for
new funding of $10 million in fiscal year 2009 to inaugurate two new
workforce programs within the National Health Service Corps in the
Health Resources and Services Administration (HRSA) that would benefit
local public health and address workforce shortages.

PROGRESS HAS BEEN MADE IN BOLSTERING THE READINESS OF LOCAL HEALTH
DEPARTMENTS TO RESPOND TO EMERGENCIES

A report released by CDC on February 20, 2008, Public Health
Preparedness: Mobilizing State by State, documents progress made by
preparedness funding grantees. According to the report, preparedness
funding has allowed State and local health departments to have a more
focused and effective response to actual emergencies, not just to plan
for a hypothetical future emergency. These real-life situations have
provided an opportunity for local health departments to exercise their
response plans and to learn where improvements can be made.
Preparedness is not simply a matter of theoretical planning for a
future catastrophe. Rather, it makes a difference in how well health
departments can respond to public health problems daily.
CDC's report confirmed the findings of a 2007 NACCHO survey of
LHDs, which found that three-quarters of local health departments
(LHDs) reported that they had improvements in preparedness but that
more improvement is needed. Virtually all local health departments had
developed a plan for mass vaccination, as well as an all-hazards
preparedness plan, had implemented the National Incident Management
System (NIMS), trained their workforce in new emergency response
skills, conducted public education campaigns, and improved their
communication systems. The pandemic influenza funding has enabled
exercising of the capabilities required for a pandemic response to take
place regularly in localities across the Nation.

STRENGTHENING THE GOVERNMENTAL PUBLIC HEALTH SYSTEM TO PROTECT LOCAL
COMMUNITIES REQUIRES SUSTAINED FUNDING

Since fiscal year 1999, Congress has provided funding to strengthen
the Nation's capacity to respond to an act of bioterrorism or other
public health emergency. After 9/11 and the anthrax attack in the fall
of 2001, Congress increased this funding markedly and included $940
million for building State and local capacities, of which about $870
million was made available to States and localities. Federal funds for
improving State and local public health preparedness have declined from
$919 million in fiscal year 2005 to $746 million in fiscal year 2008.
The President's budget would provide $609 million for fiscal year 2009,
and would cut the grant year to slightly more than nine months. In
fiscal year 2010, a $129.6 million increase in funding would be
required to maintain level, full-year funding.
The downward slope in Federal preparedness funding has severely
hampered LHDs in sustaining current activities and in building an
experienced preparedness workforce. LHDs experienced an average 20
percent funding reduction in 2007 and further reductions are expected
when HHS distributes fiscal year 2008 funds. Already, more than one-
quarter of LHDs have reduced their preparedness activities, delayed
completion of plans, and/or delayed acquisition of equipment and
supplies as a result of reduced funding. Notwithstanding the Federal
cuts, LHDS continue to contribute their share to this national effort.
Nearly half of all LHDs make use of city or county funds to pay
directly for preparedness activities. All contribute additional in-kind
resources, principally staff time diverted from other activities.
The safety and well-being of America's communities is dependent on
maintenance of the capacity of their health departments to respond in
any emergency that threatens human health. Every community now has a
public health emergency plan in place, but plans must be supported by
public health responders who engage in continuous training and
exercising. In its recent report, CDC listed challenges that remain
with regard to public health emergency preparedness. Among them were
the need for State and local health departments to sustain a system of
all-hazards planning, training, exercising, and improving. In order to
continue this essential cycle of continuous improvement, LHDs need
consistent funding. The Nation cannot afford to backslide or lose its
investment by failing to sustain Federal funding that helps health
departments continue their progress and address new and emerging
threats.
The President's budget eliminates the Advanced Practice Center
(APC) program, which provides funds to eight local health departments
to develop innovative field-tested tools and models to help other LHDs
meet emergency preparedness goals. The products produced by the APCs
are disseminated to other local health departments nationwide, saving
them the expense and trouble of designing from scratch. A cost
effective investment of $5.4 million will allow this program to
continue and to have a much greater impact than the numbers alone would
suggest.

THE PHHS BLOCK GRANT IS A LINCHPIN FOR PREVENTION

Local public health departments receive approximately 40 percent of
the Preventive Health and Health Services block grants nationally. The
block grant funds enable States and localities to address critical
unmet public health needs. The coexistence of other Federal categorical
public health funds does not mean that sufficient funds are available
to address all public health needs. They are not. Improving chronic
disease prevention through screening programs and programs that promote
healthy nutrition and physical activity are prime examples of
activities to which many jurisdictions devote PHHS funds.
According to the National Association of Chronic Disease Directors,
elimination of the PHHS block grant would cause a loss of $40.8 million
for chronic disease programs and $11.2 million for infectious disease
programs. In those States where local health departments receive a
significant amount of PHHS funds from the State, local prevention
efforts will diminish. As health care costs escalate, reducing the
Nation's commitment to prevention by eliminating the PHHS block grant,
weakening State and local public health departments, is unwise and
uneconomic.

WORKFORCE SHORTAGES THREATEN THE STRENGTH OF LOCAL PUBLIC HEALTH

According to NACCHO's 2005 Profile of Local Health Departments,
public health professionals in short supply include public health
nurses, epidemiologists, environmental health scientists, and health
educators. Nearly half of all LHDs experienced problems hiring public
health nurses in 2005 and 60 percent expected to have trouble
recruiting nurses in 2008. Staff attrition and retirement are the most
frequently cited factors causing uncertainty and concern about future
workforce capacity.
NACCHO advocates new funding of $10 million in fiscal year 2009 to
begin addressing public health workforce shortages. In 2006, the
Pandemic and All-Hazards Preparedness Act created two new programs
within the National Health Service Corps in the Health Resources and
Services Administration (HRSA). One program would allow expansion of
the National Health Service Corps on a trial basis to include loan
repayment for individuals who complete their service in a State, local,
or tribal health department that serves health professional shortage
areas or areas at risk of a public health emergency. The second program
establishes grants to States to create loan repayment programs. As the
public health role has expanded to include greater involvement in
emergency preparedness, in addition to the more traditional public
health activities like immunization and chronic disease prevention, it
is essential that there be a workforce trained to carry out these
tasks.
The National Association of County and City Health Officials
(NACCHO) is the organization representing the 2860 local public health
departments in the United States.
______

Prepared Statement of the National Association of Foster Grandparent
Program Directors

Mr. Chairman and members of the subcommittee, thank you for the
opportunity to submit this testimony in support of fiscal year 2009
funding for the Foster Grandparent Program (FGP), the oldest and
largest of the three programs known collectively as the National Senior
Volunteer Corps, which are authorized by Title II of the Domestic
Volunteer Service Act (DVSA) of 1973, as amended and administered by
the Corporation for National and Community Service (CNS). The National
Association of Foster Grandparent Program Directors (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.
Mr. Chairman, I would like to begin by thanking you and the
distinguished members of the subcommittee for your steadfast support of
the Foster Grandparent Program. No matter what the circumstances, this
subcommittee has always been there to protect the integrity and mission
of our programs. Our volunteers and the children they serve across the
country are the beneficiaries of your commitment to FGP, and for that
we thank you. I also want to acknowledge your outstanding staff for
their tireless work and very difficult job they have to ``make the
numbers fit''--an increasingly difficult task in this budget
environment.

ADMINISTRATION'S REQUEST FOR FGP

Although the number of older people in America eligible to serve as
Foster Grandparent volunteers is increasing by leaps and bounds as the
``Baby Boomer'' cohort ages, we were extremely disappointed to learn
that--instead of seeking an increase for FGP to enable FGP to engage
more low-income seniors in service--the Administration has proposed
slashing funding for FGP by $40.825 million--a more than 37 percent
cut.

IMPACT OF THE ADMINSTRATION'S PROPOSED FUNDING CUT

FGP is the only program in existence today that actively seeks out,
trains, enables, places and supports the elderly poor in contributing
to their communities by changing the lives of children who desperately
need one-on-one attention and assistance. This cut will take FGP back
12 years, to a funding level that is only slightly more than what was
appropriated for the program in 1995.
If enacted, this request will have a devastating effect on FGP
programs nationwide:
--Funding for FGP would be slashed $40.825 million.
--10,200 Foster Grandparent volunteers will be cut permanently,
slashing the total number of Foster Grandparent volunteers from
30,550 to 20,350.
--Local communities will lose more than 10 million hours of volunteer
service every year.
--FGP will permanently lose almost 10,200 Volunteer Service Years
(VSY's, or volunteer ``slots'') if this budget is implemented.
For each VSY that is cut from a Foster Grandparent Program,
that program will lose approximately $4,500 from its federal
grant.
--117,000 disadvantaged children/youth will lose their foster
grandparent, an older adult they can count on!
--Low-income Baby Boomers will be excluded from serving as Foster
Grandparents, because there will be no funds available to
recruit and place new volunteers as they reach the age of 60.
There are currently 6,000,000 low-income seniors eligible for
FGP; in 20 years, there will be 13,000,000.
NAFGPD respectfully requests that the subcommittee:
(1) Provide $115.937 million for the Foster Grandparent Program in
fiscal year 2009, an increase of $5.000 million over the fiscal year
2006 and fiscal year 2007 levels of funding (and the amount FGP would
have received in fiscal year 2008 had there not been an across-the-
board cut of 1.747 percent) for the program and an $47.763 million
increase over the Administration's fiscal year 2009 Budget Request for
FGP. This critical funding will ensure the continued viability of the
Foster Grandparent Program, and allow for important expansion of this
unique program. Specifically, this proposal would fund a 3 percent cost
of living increase for every Foster Grandparent Program as well as
expansion grants to existing programs that would add 370 new low-income
senior volunteers to serve 3,000 additional children;
(2) Maintain current appropriations statutory language that
prohibits CNCS from using funds in the bill to pay non-taxable stipends
to volunteers whose incomes exceed 125 percent of the national poverty
level. Congress has repeatedly over the last seven years re-affirmed
that the non-taxable stipend must be reserved for low-income
volunteers. We ask that you again protect the mission of the Foster
Grandparent Program to enable low-income older people to serve their
communities--by maintaining this important statutory language.

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. It remains today the only volunteer
program in existence that enables seniors living on very low incomes to
serve as community volunteers by providing a small non-taxable stipend
that allows volunteers to serve at little or no cost to themselves.
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. These programs are now
primarily in community-based child caring agencies or organizations--
where most special needs children can be found today--and are
administered locally through a non-profit organization or agency and
Advisory Council comprised of community citizens dedicated to FGP and
its mission. FGP represents the best in federal partnerships with local
communities, with federal dollars flowing directly to local sponsoring
agencies, which in turn determine how the funds are used. Through this
partnership and the flexibility of the program, FGP is able to meet the
immediate needs of the local communities. This was demonstrated by
Foster Grandparent Programs in communities that were impacted by the
influx of Hurricane Katrina evacuees. Foster Grandparents rallied to
provide services to children in shelters, child care centers, and
schools.

FGP: THE VOLUNTEERS

There are currently 30,500 Foster Grandparent volunteers who give
31 million hours annually to more than 280,000 children, including
almost 6,000 children of prisoners through 10,200 local agencies. FGP
is a versatile, dynamic, and uniquely multi-purpose program. The
program gives Americans 60 years of age or older, who are living on
incomes at or less than 125 percent of the poverty level, the
opportunity to serve 15 to 40 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. FGP
provides intensive pre-service orientation and at least 48 hours of
ongoing training every year to keep volunteers current and informed on
how to work with children who have special needs.
FGP engages older people who are not usually asked to serve, those
usually considered as needing services rather than being able to serve:
50 percent are between the ages of 61 and 74, 47 percent are 75+, and
50 percent are from various ethnic groups. FGP actively seeks out these
low-income seniors. We dare to ask them to serve, and we help them to
develop the additional skills they may need to function effectively in
settings unfamiliar to them, like public schools, hospitals, childcare
centers, and juvenile detention facilities. 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 that has been
learned the hard way--through experience.

FGP: THE CHILDREN

Through our volunteers, FGP 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/her 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 and terminal illness. Of the children
served, 7 percent are abused or neglected, 25 percent have learning
disabilities, and 10 percent have developmental delays. FGP focuses its
resources in areas where they will have the most impact: early
intervention services and literacy activities. Nationally, 90 percent
of the children served by Foster Grandparents are under the age of 12,
with 39 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.
Nearly one-half of FGP volunteers serve nearly 12 million hours
annually addressing literacy and emergent-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 and toddlers at-risk; helping children
with developmental delays, speech, or physical disabilities develop
social and self-help skills; reinforcing reading and mathematic skills;
and giving guidance and serving as mentors to incarcerated or other
youth.

FGP: THE VOLUNTEER SITES

The Foster Grandparent Program provides child-caring agencies and
organizations offering services to special-needs children with a
consistent, reliable, invaluable extra pair of hands 15 to 40 hours
every week to assist in providing these services. Seventy-one percent
of FGP volunteers serve in public and private schools as well as sites
that provide early childhood pre-literacy services to very young
children, including Head Start.

FGP: COST-EFFECTIVE SERVICE

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 2006 valuation for one hour of volunteer service ($18.77/
hour), the value of the service given by Foster Grandparents annually
is over $503 million, and represents a 4-fold return on the federal
dollars invested in FGP.
The value local communities place on FGP and its multifaceted
services is evidenced by the large amount of cash and in-kind donations
contributed by communities to support FGP. For example, FGP's fiscal
year 2007 federal allocation was matched with $36.1 million in non-
federal donations from states and local communities in which Foster
Grandparents volunteer. This represents a non-federal match of 26
percent--well over the 10 percent local match required by law.

CONCLUSION

The message is clear: (1) the population of low-income seniors
available to volunteer 15 to 40 hours every week is increasing; (2)
communities need and want more Foster Grandparent volunteers and more
Foster Grandparent Programs. The Subcommittee's continued investment in
FGP now will pay off in savings realized later, as more seniors stay
healthy and independent through volunteer service, as communities save
tax dollars, and as children with special needs are helped to become
contributing members of society.
Mr. Chairman, in closing I would like to again thank you for the
Subcommittee's support and leadership for Foster Grandparent Programs
over the years. The National Association of Foster Grandparent Program
Directors believes that you and your colleagues in Congress appreciate
what our low-income senior volunteers accomplish every day in
communities across the country.
______

Prepared Statement of the National Association of State Alcohol and
Drug Abuse Directors

Chairman Harkin, ranking member Specter, and members of the
subcommittee, on behalf of the National Association of State Alcohol
and Drug Abuse Directors (NASADAD), and our component organizations,
the National Prevention Network (NPN), and the National Treatment
Network (NTN), thank you for your leadership on issues related to
addiction treatment, prevention, recovery services and research. We are
pleased to offer recommendations on fiscal year 2009 funding.
Substance Abuse Spending Represents Tiny Fraction of all Health
Expenditures.--It is estimated that substance abuse represented 1
percent ($21 billion) of the expenditures for all healthcare ($1,614
billion) in 2003. With over 22.6 million Americans suffering from
substance abuse or dependency problems in 2006, we believe an increase
in Federal investments for addiction services and research will save
lives, families, and money.
Substance Abuse Prevention and Treatment (SAPT) Block Grant:
NASADAD recommends $1,858.7 million for the SAPT Block Grant in fiscal
year 2009--an increase of $100 million over fiscal year 2008 and $80
million over the President's request. NASADAD supports such an increase
in the SAPT Block Grant to enable all States the ability to expand
capacity for much needed prevention and treatment services. The SAPT
Block Grant, a program distributed by formula to all States and
territories, represents the backbone of the nation's publicly funded
addiction system.
Important Prevention Funding: Twenty percent of the SAPT Block
Grant is dedicated to funding much needed substance abuse prevention
programming. The prevention set-aside has helped produce demonstrable
results. The Monitoring the Future (MTF) Survey found a 23 percent
decline in any illicit drug use in the past month by 8th, 10th and 12th
graders combined between 2001 and 2006. As a result, there were 840,000
fewer teens using drugs in 2006 compared to 2001. A strong commitment
to the SAPT Block Grant will ensure a strong commitment to much needed
prevention services for our youth.
SAPT Block Grant Funded Services Achieve Results: Through the
National Outcome Measures (NOMs) initiative, States report excellent
results from programs funded by the SAPT Block Grant--including the
following examples:
Iowa's Division of Behavioral Health and Professional Licensure
reported 42,700 admissions to treatment and provided prevention
services to approximately 304,503 individuals in State fiscal year
2006. For State fiscal year 2006, the Iowa's Consortium for Substance
Abuse Research and Evaluation found the following client outcomes
comparing admission to 6 months after discharge: 87 percent of clients
reported no arrests; 51.8 percent of clients were employed full time;
and approximately 60 percent of clients were abstinent from illicit
drugs.
Pennsylvania's Bureau of Drug and Alcohol Programs reported 92,224
admissions to treatment and provided prevention services to 111,145
individuals in State fiscal year 2005. In Sfiscal year 2005, the Bureau
reported the following client outcomes comparing admission to
discharge: 77 percent of clients addicted to alcohol were abstinent; 71
percent of clients addicted to cocaine/crack were abstinent; 75 percent
of clients addicted to marijuana were abstinent; and 65 percent of
clients addicted to heroin were abstinent.
Rhode Island's Division of Behavioral Healthcare Services reported
8,170 admissions to treatment in 2006 and reported the following client
outcomes: an 84.3 percent increase in the number of patients abstinent
from alcohol; a 74.8 percent increase in the number of patients
abstinent from other drugs; an 81.3 percent decrease in the number of
patients arrested; and a 23 percent decrease in homelessness.
Illinois' Division of Alcoholism & Substance Abuse reported 77,386
admissions to treatment and provided services to 165,289 persons in
State fiscal year (SFY) 2006. In Sfiscal year 2006, the Division
reported the following client outcomes: 62 percent increase in the
number of patients abstinent from alcohol; a 73 percent increase in the
number of patients abstinent from illicit drug use; a 33 percent
increase in the number of patients employed; and a 24 percent decrease
in homelessness.
NASADAD wishes to recognize Dr. Terry Cline, SAMHSA Administrator,
for his leadership, outreach and collaboration with States to improve
service delivery.
Center for Substance Abuse Treatment (CSAT): NASADAD recommends
$420 million in fiscal year 2009--an increase of $20.2 million compared
to fiscal year 2008 and an increase of $80 million compared to the
President's request.
NASADAD is extremely concerned with the fiscal year 2009 proposed
budget that would cut CSAT by $63 million compared to fiscal year 2008.
The proposed budget for CSAT would eliminate the following activities
that are important to State substance abuse agencies:
--Recovery Community Services Program, a cut of $5.2 million.
--State Service Improvement, with no funding fiscal year 2008 and
$907,000 in fiscal year 2007.
--Pregnant and Postpartum Women, a cut of $11,790,000.
--Program Coordination and Evaluation, a cut of $5,214,000. This
initiative supports important initiatives such as Recovery
Month.
--Strengthening Treatment Access & Retention, a cut of $3.6 million.
--Children and Families, a cut of $24,278,000.
The proposed budget for CSAT would significantly reduce funding for
other programs that are important to State substance abuse agencies,
including
--Opioid Treatment Programs/Regulatory Activities, a cut of
$2,886,000 compared to the fiscal year 2008 level of
$8,903,000).
--Targeted Capacity Expansion [TCE], a cut of $11,191,000 compared to
the fiscal year 2008 level of $28,989,000.
--Services Accountability (supports CSAT data collection activities),
a cut of $13,617,000 compared to the fiscal year 2008 level of
$23,093,000.
--Addiction Technology Transfer Centers [ATTCs], a cut of $478,000
compared to the fiscal year 2008 level of $9,081,000.
--Treatment Systems for the Homeless, a cut of $9,906,000 compared to
the fiscal year 2008 level of $42,5000,000.
NASADAD wishes to acknowledge Dr. H. Westley Clark, Director of
CSAT, for his leadership and excellent partnership with NASADAD and
States.
Center for Substance Abuse Prevention (CSAP): NASADAD recommends
$215 million--an increase of $20.9 million compared to fiscal year 2008
and an increase of $56.9 million compared to the President's proposal.
NASADAD is very concerned with the proposal to cut funding for CSAP
by $36 million compared to fiscal year 2008. The proposed budget for
CSAP would negatively impact a number of activities that are important
to State substance abuse agencies.
For example, NASADAD is concerned with a proposal to fund the
Strategic Prevention Framework State Incentive Grant at $95,389,000,
representing a cut of $9,318,000 compared to the fiscal year 2008 level
of $104,707,000. Presently, the proposed fiscal year 2009 budget does
not identify whether SAMHSA would allocate future SPF-SIG awards at
levels equal to previous years. NASADAD views resources for the SPF-SIG
program as a top priority and recommends funding that would enable all
States and jurisdictions to receive an award in an amount that is not
less than the last cohort.
NASADAD is also concerned with the proposal to fund the Centers for
the Application of Prevention Technologies [CAPTs] at $4,381,000,
representing a cut of $7,656,000 compared to the fiscal year 2008 level
of $12,216,000. NASADAD remains concerned with any action that could
threaten the continuation of the CAPTs in their present form and
structure. NASADAD recommends funding at fiscal year 2008 levels for
the CAPTs in order to enable these regional Centers to continue to
improve the quality of each State's substance abuse prevention service
system by translating the latest research into everyday practice.
Other concerns with the fiscal year 2009 proposed budget center on
the following proposals:
--Sober Truth on Prevention Underage Drinking [STOP Act], which is
proposed to be eliminated, representing a cut of $5,404,000.
--Methamphetamine Prevention, a cut of $2,386,000 compared to the
fiscal year 2008 level of $2,967,000.
--Program Coordination/Data Coordination and Consolidation Center, a
cut of $5,186,000 compared to the fiscal year 2008 level of
$6,016,000.
--Evidence Based Practices, which is proposed to remain at zero
funding as it was in fiscal year 2008, while the program was
funded at $1,443,000 in fiscal year 2007.
NASADAD wishes to acknowledge the work of Dr. Anna Marsh, Acting
Director of CSAP, for her work and dedication on prevention issues.
Safe and Drug Free Schools and Communities--State Grants: NASADAD
recommends $346.5 million, representing a $51.8 million increase over
fiscal year 2008 and $246.5 million increase over the President's
request. The SDFSC State Grants program is an effective initiative that
represents a core component of each State's substance abuse prevention
system. Certain Governors choose NASADAD members as the designee to
manage these funds. This designation allows for a more comprehensive
and coordinated approach to planning and implementing an effective
State-wide system of care.
National Institute on Drug Abuse (NIDA): NASADAD recommends
$1,067.8 million, representing an increase of $67.1 million over fiscal
year 2008 and an increase of $66.2 million over the President's
request. NASADAD wishes to thank Dr. Nora Volkow, Director of NIDA, for
her collaboration with State substance abuse agencies through its
``Blending Initiative.'' This work improves the translation of research
into everyday practice.
National Institute on Alcohol Abuse and Alcoholism (NIAAA): NASADAD
recommends $465.5 million, for an increase of $29.2 million over fiscal
year 2008 and an increase of $28.9 million over the President's
request.
______

Prepared Statement of the National Association for State Community
Services Programs

Over the past several years and once again this year, the President
has zeroed out the Community Services Block Grant (CSBG) program in his
budget. However, recognizing the importance of the numerous self-
sufficiency services provided by the CSBG Network, Congress has
continued to support the program in word and in action by providing the
CSBG program with funding. The National Association for State Community
Services Programs (NASCSP), the national association representing State
administrators of the Department of Health and Human Services'
Community Services Block Grant (CSBG) and State directors of the
Department of Energy's Low-Income Weatherization Assistance Program,
would like to thank Congress for its continued support of the Community
Services Block Grant (CSBG) and requests an appropriation of $700
million for the State grant portion of the CSBG. We are requesting $700
million in CSBG funding this year in order for the CSBG Network to
continue addressing the long-term needs of those families affected by
Hurricanes Katrina and Rita and those families transitioning from
welfare to work, and to assist low-income workers in remaining at work
through supportive services such as transportation and child care. It
is essential that the CSBG funding be increased for fiscal year 2009.
The across the board cuts to the CSBG funding over the past several
years have decreased the ability of the CSBG Network to provide
essential services to low-income Americans.

BACKGROUND

The States believe the CSBG is a unique block grant that has
successfully transferred decision-making to the local level. Federally
funded with oversight at the State level, the CSBG has maintained a
local network of nearly 1,100 agencies which operate in 99 percent of
counties in the Nation. This network serves nearly 15 million low-
income individuals, members of more than 7 million low-income families,
CSBG eligible entities, largely local Community Action Agencies (CAAs),
provide States with a stable and guaranteed network of designated
entities which are mandated to change the conditions that perpetuate
poverty for individuals, families, and communities. There is no other
program in the United States mandated by Federal statute to respond to
poverty. To fulfill that mandate, CAAs provide services based on the
characteristics of poverty in their communities. For one community,
this might mean providing job placement and retention services; for
another, developing affordable housing. In rural areas, it might mean
providing access to health services or developing a rural
transportation system.
Since its inception, the CSBG has shown how partnerships between
States and local agencies benefit citizens in each State. We believe it
should be viewed as a model of how the Federal Government can best
promote self-sufficiency for low-income persons in a flexible,
decentralized, non-bureaucratic and accountable way.
Long before the creation of the Temporary Assistance for Needy
Families (TANF) block grant, the CSBG set the standard for private-
public partnerships that work to revitalize local communities and
address the needs of low-income residents. Family oriented, while
promoting economic development and individual self-sufficiency, the
CSBG relies on an existing and experienced community-based service
delivery system of CAAs and other non-profit organizations to produce
results for its clients.

WHAT DO LOCAL CSBG AGENCIES DO?

Since CAAs operate in rural areas as well as in urban areas, it is
difficult to describe a typical Community Action Agency. However, one
thing that is common to all is the goal of self-sufficiency for all of
their clients. Reaching this goal may mean providing day care for a
struggling single mother as she completes her General Equivalency
Diploma (GED) certificate, moves through a community college course and
finally is on her own supporting her family without Federal assistance.
Many CAAs administer the Head Start Program which helps meet the
educational needs of low-income families. It may mean assisting a
recovering substance abuser as he seeks employment. Many of the
Community Action Agencies' clients are persons who are experiencing a
one-time emergency. Others have lives of chaos brought about by many
overlapping forces--a divorce, sudden death of a wage earner, illness,
lack of a high school education, closing of a local factory or the loss
of family farms.
CAAs provide access to a variety of opportunities for their
clients. Although they are not identical, most will provide some, if
not all, of the services listed below:
--a variety of crisis and emergency safety net services
--employment and training programs
--transportation and child care for low-income workers
--individual development accounts
--micro business development help for low-income entrepreneurs
--local community and economic development projects
--housing, transitional housing, and weatherization services
--Head Start
--energy assistance programs
--nutrition programs
--family development programs
--senior services
CSBG is the core funding which holds together a local delivery
system able to respond effectively and efficiently, without a lot of
red tape, to the needs of individual low-income households as well as
to broader community needs. In addition, CSBG funds many of these
services directly. Without the CSBG, local agencies would not have the
capacity to work in their communities developing local funding, private
donations and volunteer services and running programs of far greater
size and value than the actual CSBG dollars they receive.
CAAs manage a host of other Federal, State, and local programs
which makes it possible to provide a one-stop location for persons
whose problems are usually multi-faceted. Over half (52 percent) of the
CAAs manage the Head Start program in their community. Using their
unique position in the community, CAAs recruit additional volunteers,
bring in local school district personnel, tap into faith-based
organizations for additional help, coordinate child care and bring
needed health care services to Head Start centers. In many States they
also manage the Low Income Home Energy Assistance Program (LIHEAP),
raising additional funds from utilities for this vital program. CAAs
may also administer the Weatherization Assistance Program and are able
to mobilize funds for additional work on residences not directly
related to energy savings that, for example, may keep a low-income
elderly couple in their home. CAAs also coordinate their programs with
the Community Development Block Grant program to stretch Federal
dollars and provide a greater return for tax dollars invested. They
also administer the Women, Infants and Children (WIC) nutrition
program, as well as job training programs, substance abuse programs,
transportation programs, domestic violence and homeless shelters, and
food pantries.
For every CSBG dollar they receive, CAAs leverage $5.47 in non-
Federal resources (State, local, and private) to coordinate efforts
that improve the self-sufficiency of low-income persons and lead to the
development of thriving communities.

WHO DOES THE CSBG SERVE?

National data compiled by NASCSP show that the CSBG serves a broad
spectrum of low-income persons, particularly those who are not being
reached by other programs and are not being served by welfare programs.
Based on the most recently reported data, from fiscal year 2005 CSBG
serves:
--More than 3 million families with incomes at or below the poverty
level; of these customer families, 31 percent are severely poor
as they have incomes at or below 50 percent of the poverty
guideline.
--More than 1.3 million families headed by single mothers.
--More than 1.6 million ``working poor'' families with wages or
unemployment benefits as income; collectively, they make up 45
percent of all program participants.
--More than 404,000 TANF participant families, 23 percent of all TANF
families nationwide.
--About 4 million children.
--Almost 2.8 million people without health insurance.
--Almost 1.8 million adults who had not completed high school.

MAJOR CHARACTERISTICS OF THE CSBG NETWORK

Due to the unique structure of the CSBG, the CSBG Network has
earned a reputation for its:
Emergency Response.--CAAs are utilized by Federal and State
emergency personnel as a frontline resource to deal with emergency
situations such as floods, hurricanes and economic downturns. They are
also relied on by citizens in their community to deal with individual
family hardships, such as house fires or other emergencies.
In fact, during and after Hurricanes Katrina and Rita, the State
CSBG offices and local CAAs quickly mobilized to provide immediate and
long-term assistance to over 355,000 evacuees. This immediate
assistance included, but was not limited to, transportation, food,
medical check-ups, housing, utility deposits, job placement, and
clothing. State CSBG offices and CAAs across the country coordinated
their relief efforts with other agencies providing disaster relief
assistance such as FEMA, Red Cross, and other faith-based and
community-based organizations.
State CSBG offices, through their local network of CAAs, continue
to provide the long-term assistance evacuees will need as they re-
establish themselves through self-sufficiency and family development
programs. These programs offer comprehensive approaches to selecting
and offering supportive services that promote, empower and nurture the
individuals and families seeking economic self-sufficiency. At a
minimum, these approaches include:
--A comprehensive assessment of the issues facing the family or
family members and of the resources the family brings to
address these issues;
--A written plan for becoming more financially independent and self-
supporting;
--A comprehensive mix of services that are selected to help the
participant implement the plan;
--Professional staff members who are flexible and can establish
trusting, long-term relationships with program participants;
and
--A formal methodology used to track and evaluate progress as well as
to adjust the plan as needed.
Leveraging Capacity.--In fiscal year 2006, every CSBG dollar
leveraged $18.73 from all other sources. Of those leveraged funds,
$5.47 came from non-Federal resources (State, local, and private) to
coordinate efforts that improve the self-sufficiency of low-income
persons and lead to the development of thriving communities.
Volunteer Mobilization.--CAAs mobilize volunteers in large numbers.
In fiscal year 2006, the most recent year for which data are available,
the CAAs elicited more than 44 million hours of volunteer efforts, the
equivalent of almost 21,187 full-time employees. Using just the minimum
wage, these volunteer hours are valued at nearly $227 million.
Adaptability.--CAAs provide a flexible local presence that
governors have mobilized to deal with emerging poverty issues.
Moreover, the CSBG Network has also earned a reputation for its:
Accountability.--The Federal Office of Community Services, State
CSBG offices, and CAAs have worked closely to develop a results-
oriented management and accountability (ROMA) system. Through this
system, individual agencies determine local priorities within six
common national goals for CSBG and report on the outcomes that they
achieved in their communities.
Local Direction and Oversight.--Tri-partite boards of directors
guide CAAs. These boards consist of one-third elected officials, one-
third representatives from the private sector, and not less than one-
third of the members are representative of the low-income persons in
the neighborhoods served by the CAA. The boards are responsible for
establishing policy and approving business plans of the local agencies.
Since these boards represent a cross-section of the local community,
they guarantee that CAAs will be responsive to the needs of their
community.
The statutory goal of the CSBG is to ameliorate the effects of
poverty. The primary goal of every CAA is self-sufficiency for its
clients. Helping families become self-sufficient is a long-term process
that requires multiple resources. This is why the partnership of
Federal, State, local and private enterprise has been so vital to the
successes of the CAAs.

EXAMPLES OF CSBG AT WORK

Since 1994, CSBG has implemented a Results-Oriented Management and
Accountability (ROMA) system. Through ROMA, the effectiveness of
programs is captured through the use of goals and outcomes measures.
Below you will find the network's nationally aggregated outcomes
achieved by individuals, families and communities as a result of their
participation in innovative CSBG programs during fiscal year 2006:
--104,792 participants gained employment with the help of community
action
--34,115 participants obtained ``living wage'' employment with
benefits
--82,981 low-income participants obtained safe and affordable housing
in support of employment stability
--715,870 low-income households achieved an increase in non-
employment financial assets, including tax credits, child
support payments, and utility savings, as a result of community
action ($288 million in aggregated savings)
--1,301 families achieved home ownership as a result of accumulated
savings from IDA savings accounts
--157,061 low-income people obtained pre-employment skills and
received training program certificates or diplomas, completed
Adult Basic Education or GED coursework and received
certificates or diplomas, and/or completed post-secondary
education and obtained a certificate or diploma
--4,498,366 new community opportunities and resources were created
for low-income families as a result of community action work or
advocacy, including ``living wage'' jobs, affordable and
expanded public and private transportation, medical care, child
care and development, new community centers, youth programs,
increased business opportunity, food, and retail shopping in
low-income neighborhoods
At the end of the day, the CSBG Network represents our abiding
national commitment to care for the less fortunate and in recognition
that we are stronger when we do so. The CSBG and CSBG Network, in
addition to other non-profit faith-based and community-based
organizations, are a critical complement to the public sector's efforts
towards helping to lift low-income Americans and their communities out
of poverty and into self-sufficiency.
In fiscal year 2006, the CSBG Network assisted approximately 22
percent of the persons in poverty that year and almost 15 million low-
income individuals who are members of more than 7 million low-income
families. Renewed funding for the CSBG Network is one of the best ways
to ensure that America has an experienced, guaranteed and trusted
network to assist its most vulnerable families in achieving and
maintaining self-sufficiency. As such, NASCSP requests $700 million in
CSBG funding for fiscal year 2009.
______

Prepared Statement of the National Association of State Head Injury
Administrators

Mr. Chairman, on behalf of the National Association of State Head
Injury Administrators (NASHIA), I am submitting this testimony in
support of funding the Federal Traumatic Brain Injury (TBI) Grant
Program at $15 million for fiscal year 2009. The members of NASHIA also
thank you for your support of the reauthorization of the TBI Act, which
is expected to be signed into law within the next few days.
This year marks the eleventh year that grants have been available
to States to develop and expand service delivery systems to better
serve those with TBI and their families. Congress originally authorized
the Federal TBI Program under the TBI Act of 1996, and the most recent
reauthorization bill is currently awaiting the President's signature.
The Act authorizes funding to the Department of Health and Human
Services, Health Resources and Services Administration (HRSA) for
grants to States, the District of Columbia and Territories to improve
access and increase service delivery for individuals with TBI and their
families. The Act also authorizes funding to HRSA for Protection &
Advocacy Services (P&A) for individuals with TBI and their families and
to the Centers for Disease Control and Prevention (CDC) for injury
surveillance, prevention and public education.
The HRSA Federal TBI State Grant Program began as a very small
program, yet it remains the only source of Federal funding that spurs
States to develop, expand and improve service delivery for individuals
with TBI and their families. For the past 4 years, the administration
has zeroed out funding for the program as a result of a poor PART score
by the Office of Management and Budget (OMB). This was unfortunate for
persons with TBI and their families because the PART evaluation was
flawed as it measured health outcomes for individuals and this program
was not designed nor intended to provide direct health services.
In order to better evaluate the program, the Institute of Medicine
(IOM) conducted a study and issued a report on its findings in 2006.
The report commended state activities, particularly in leveraging other
resources, but was less complimentary of program management due to lack
of staff (there has been only one staff person) and agency commitment.
IOM recommended that an advisory board be established as soon as
possible to assist HRSA in setting a national agenda, coordinating with
sister federal agencies and to develop evaluation procedures for the
program.
The IOM found that the ``Federal Program has demonstrated
beneficial change in State organizational infrastructure and increased
the visibility of TBI--both essential conditions for improving TBI
service systems.'' Further, the IOM noted that ``States are now at a
critical stage and will need continued Federal support if they are to
build an effective, durable service system for meeting the needs of
individuals with TBI and their families.'' Federal funding, however,
has declined.
To address IOM's recommendations and the emerging issues, such as
returning troops with misdiagnosed or undiagnosed TBIs, we respectfully
request $15 million for the HRSA Federal TBI State Grant Program. This
would allow each State to be funded in the amount of $250,000, which is
closer to the amount initially awarded to States in 1997 for
Implementation Grants. Over time, HRSA lowered the grant award amounts
to $100,000 in an effort to bring more States into the program, with
the Territories receiving $70,000. While this approach may have helped
to bring attention to TBI in more States, fewer dollars to each State
made it more difficult to make important systems change and to sustain
efforts.
As the result of the large number of returning troops from Iraq and
Afghanistan who have TBI and related conditions, States are facing an
increased demand for information, community resources, assistance and
family supports. Almost half of the States legislatures, Governors and/
or department directors have initiated State agency coordination among
TBI, mental health, State Veteran's Commissions and National Guard or
have elected to only focus on either TBI or Post Traumatic Stress
Disorder (PTSD) in some capacity to address these concerns. This puts
more pressure on TBI systems that are already woefully underfunded.
Given that the origin of these TBIs is a result of service to our
country, this has resulted in a federal action that ultimately imposes
an additional burden on the States. A $100,000 grant is inadequate for
States to develop and sustain efforts previously initiated, let along
increase service delivery each year to meet the growing number of
individuals with TBI and their families, including returning
servicemembers.
NASHIA also supports $9 million for CDC data surveillance,
prevention and public education programs, and $6 million for the HRSA
P&A Services Grant Program to expand their client advocacy to include
individuals with TBI. These programs augment States' abilities to
better plan for service delivery, as the result of CDC data, and the
P&A grants help individuals to access these often confusing and
complicated systems.
Families are the primary caretakers of individuals with TBI, and
these families are aging as well. The CDC has just released its
informational packet, ``Help Seniors Live Better, Longer: Prevent Brain
Injury Initiative'' as the result of its finding that people ages 75
and older have the highest rates of TBI-related hospitalizations and
death--another emerging issue. States have limited resources to provide
the long-term care and supports needed for those who may not have
families any longer to protect and support them. They are faced with
decreased State revenue, cut backs in Medicaid and other Federal
resources.
Despite all these challenges, States have been able to leverage and
maximize other resources to address unmet needs. Some of these examples
include:

VETERANS AND RETURNING TROOPS

The beauty of the HRSA Federal TBI Grant program is that it directs
States to develop necessary infrastructure for service delivery, and
promotes coordination of State programs and policies through the
advisory boards and by the lead TBI agency. As such, those States that
have had strong leadership and commitment for TBI services, are poised
to help their sister State agencies and returning troops to access
services. A few States (MA, VT and NY) have already been at the
forefront of collaborating with other State and local agencies to
better coordinate public education, outreach, information & referral
and resources to returning troops with TBI or for those who may be
misdiagnosed and undiagnosed.

CHILDREN

The CDC estimates that 37,000 children and youth receive brain
injuries severe enough to require hospitalization each year. According
to the most recent U.S. Department of Education numbers, the total
number of students served in special education under the TBI category
is 14,844. This discrepancy in numbers illustrates that the majority of
students with traumatic brain injury are either misclassified or not
identified at all as having a brain injury and will not receive needed
services.
As the result of these findings, States (OR, TN, AL, PA, HI, OH)
have used their Federal grant funding to screen children for TBI in
public educational settings to improve identification; developed
resources for educators to help with developing Individual Education
Programs (IEPs) and appropriate educational and behavioral strategies
to improve learning; and/or resource teams to provide consultative
services.

UNSERVED/UNDERSERVED

Several States have used their Federal funds to provide outreach to
Native Americans (MT, OH, ND, AZ) and other cultures, such as African
Americans, Hispanics and Asians (MA, NJ, IL, CT, FL, MN), to access
TBI, needed services and supports to live and work in the community.

TBI TECHNICAL ASSISTANCE CENTER (TAC)

Another important component of the HRSA Federal TBI Program is the
TBI TAC which is administered by NASHIA in order to help State grantees
and non-grantees to:
--Develop Service delivery infrastructure
--Develop effective programs that improve access to health and other
TBI services
--Develop plans for sustainability after federal funding ends
--Develop plan, implement and evaluate TBI related initiatives
--Identify resources, develop strategies, and implement programs for
children and youth and ensure that activities are appropriately
family centered and culturally competent.
--Develop and submit grantee proposal applications
The TBI TAC also develops and conducts the annual Federal TBI
Program Grantee Meetings, offers peer mentoring to encourage the
transfer of knowledge among the States and Territories, and
disseminates materials and resources.

RESPONDING TO NATIONAL NEEDS

The TBI TAC responds to emerging issues through webcast trainings
and informational packets on state and community initiatives. These
educational packets include information on returning troops with TBI;
TBI trust funds to support rehabilitation services and supports;
educational services for children, screening tools, and training
programs for direct support personnel and other professionals. Webcasts
have been conducted on a variety of issues including services provided
by the Veterans Administration, housing, substance abuse, employment,
TBI trust funds, domestic violence, children's services, educational
services and neurobehavioral health.
The TBI TAC also maintains a data base known as the Traumatic Brain
Injury Collaboration Space (TBICS). The TBICS is a clearinghouse of all
products and materials available for improving state service delivery.
The TBI TAC also operates a listserv for approximately 1,000
subscribers to disseminate information and for subscribers to submit
questions and share ``best practices.''

STILL WORK TO DO

While the IOM acknowledged these and other State efforts, it still
noted that the quality and coordination of post-acute TBI service
systems remains inadequate. Individuals with TBI, their families,
caregivers and others report substantial problems in getting basic
services, including housing, vocational services, neurobehavioral
services, transportation and respite for caregivers. Service
coordination, which is offered in some States, is not uniformly offered
in all States to all age groups. Families still report the need for
information and assistance at the time of hospitalization, and help
with resulting behavioral problems that often are too burdensome to the
family. States report difficulty in finding and paying for qualified
and experienced providers, professionals and direct care workers.
Training and education are needed across the board for individuals,
families, professionals, provides and policy makers to understand the
complexity of the disability and resulting problems.
In conclusion, while the Federal TBI Act Programs have impacted
State and local service delivery significantly, it is the only Federal
funding available to help States develop, improve and expand service
delivery to meet the growing, yet differing needs of individuals of all
ages, all cultures and regardless of cause of injury--motor vehicle,
falls, sporting, or occupational, including war-related injuries. This
burden on the States is significant, complex and requires additional
funding resources. For States to continue their efforts, let alone
increase their capacity for the growing numbers of individuals with TBI
needing community and long-term care and supports, will take
significant federal support. We, therefore, urge you to increase
funding for HRSA Federal TBI State Grant Program to $15 million, as
well as appropriate $9 million to CDC and $6 million to the HRSA TBI
P&A Grant Programs.
Thank you for your continued support for the millions of
individuals with TBI and those who serve them.
______

Prepared Statement of the National Association of State Mental Health
Program Directors

Chairman Harkin, ranking member Specter, and members of the
subcommittee, on behalf of the National Association of State Mental
Health Program Directors (NASMHPD), thank you for the opportunity to
submit testimony on behalf of the $29.5 billion public mental health
service delivery systems serving 6.1 million people annually in all 50
States, four territories, and the District of Columbia. NASMHPD is the
only national association to represent State mental health
commissioners/directors and their agencies. In addition, NASMHPD has an
affiliation with the approximately 220 State psychiatric hospitals. Our
members administer and manage community-based systems of care for the
millions of individuals with serious mental illness who at times
require immediate access to a variety of inpatient facilities and
psychiatric units in general hospitals but are often cared for
successfully in the community.
An October 2006 report by NASMHPD illustrates how dire the need is
for people with mental illness. This report States that persons with
serious mental illness die, on average, 25 years earlier than the
general population. In addition, according to the Substance Abuse and
Mental Health Services Administration (SAMHSA), an estimated 17 million
adults ages 18 and older (8.0 percent of the adult population) reported
experiencing at least one major depressive episode during the past
year. Finally, in the RAND Corporation's 2008 report, ``Invisible
Wounds of War: Psychological and Cognitive Injuries, Their
Consequences, and Services to Assist Recovery,'' researchers concluded
that there needs to be a nationwide effort to expand and improve the
capacity of the mental health system to provide adequate care to
members of the military and veterans. RAND further reported that this
effort must involve the public mental health system, as well as the
military and veteran health care systems.
The Community Mental Health Services Block Grant (Block Grant).--
NASMHPD recommends providing $482.9 million for the Block Grant, which
represents a $61.9 million increase over both the fiscal year 2008
budget and the President's fiscal year 2009 request.
The Block Grant is the principal Federal discretionary program
supporting community-based mental health services for adults and
children. States use Block Grant funding to provide a range of critical
services for adults with serious mental illnesses and children with
serious emotional disturbances, including employment and housing
assistance, case management, school-based support services, family and
parenting education, and peer support.
The Block Grant is vital because it gives each State the
flexibility to: fund services that are tailored to meet the unique
needs and priorities of consumers of the public mental health system in
that State; hold providers accountable for access to, and quality of
services provided; and coordinate services to help finance medical and
social services that individuals with mental illnesses need to live
safely and effectively in the community. The following are recent
examples of how States used the Block Grant in the past to provide
vital services:
Iowa.--Community mental health centers (CMHCs) that receive Block
Grant funding use the funding to develop and implement evidence based
practices for adults with serious mental illness and children with
serious emotional disturbance. Block Grant funding has been used to
provide training to CMHC about evidence based practices, how to
evaluate programs for effectiveness, and how to transition from non-
evidence based practices. In addition, the Block Grant funds technical
assistance to individual CMHCs regarding the implementation of evidence
based practices.
Pennsylvania.--Pennsylvania allocated the majority of its fiscal
year 2006 Block Grant funds to County Mental Health Programs, which
expanded funds for services and supports to adults and older adults
with serious mental illness and children with serious emotional
disturbance. Block Grant funds may be spent in any service center
except Psychiatric Inpatient services. These service areas include:
community services; crisis intervention services; adult developmental
training; community employment services; facility-based vocational
rehabilitation; social rehabilitation services; family support
services; community residential services; children's psychosocial
rehabilitation services; community treatment teams; intensive case
management; outpatient mental health; day treatment (partial
hospitalization); family based mental health; resource coordination;
administrative management; and emergency services such as housing
support services.
Wisconsin.--Wisconsin's Block Grant funding has helped one or more
of the following priorities: Certified Community Support Program
development and service delivery; supported housing program development
and service delivery; initiatives to divert persons from jails to
mental health services; development and expansion of mobile crisis
intervention programs; consumer peer support and self-help activities;
coordinated, comprehensive services for children with serious emotional
disturbance; development of strategies and services for persons with
co-occurring mental health/substance use disorders, or mental health
outcome data system improvement.
programs of regional and national significance (prns)
NASMHPD recommends providing $343.3 million for PRNS, which
represents a $44 million increase over fiscal year 2008 and a $188
million increase over the President's fiscal year 2009 request.
The Center for Mental Health Services (CMHS) addresses priority
mental health care needs of regional and national significance by
developing and applying best practices, providing training and
technical assistance, building targeted capacity expansion, and
changing the service delivery system through family, client-oriented
and consumer-run activities. Several important programs that will be
positively affected by an increase in PRNS funding include, but are not
limited to:
Suicide Prevention for Children and Adolescents.--$55.7 million
In 2004, 32,439 individuals died by suicide in the United States.
Of these suicides, more than 4,500 were young people between the ages
of 10-24. Nationally, suicide is the third leading cause of death among
children aged 10-14 and among adolescents and young adults aged 15-24.
According to the final report of President Bush's New Freedom
Commission on Mental Health (2003), ``our Nation's failure to
prioritize mental health is a national tragedy . . . No loss is more
devastating than suicide. Over 30,000 lives are lost annually to this
largely preventable public health problem . . . Many have not had the
care in the months before their death that would help them to affirm
life. The families left behind live with shame and guilt . . .''
CMHS funds two specific suicide prevention initiatives. The first
initiative is the National Suicide Prevention Lifeline (1-800-273-
TALK), a network of more than 120 crisis centers across the country
that respond, 24 hours a day, to individuals in emotional distress or
suicidal crisis. In 2007, SAMHSA and the Department of Veterans'
Affairs partnered to expand the reach of the Lifeline to provide for
specialized veteran services. The second initiative is the Suicide
Prevention Resource Center, which provides prevention support,
training, and materials to strengthen suicide prevention efforts.
Mental Health Transformation State Incentive Grants.--$29.8 million
The Mental Health Transformation State Incentive Grants (T-SIGs)
support States' efforts to create comprehensive mental health plans and
enhance the use of existing resources to serve persons with mental
disorders. SAMHSA awarded seven T-SIGs in fiscal year 2005; two
additional T-SIGs were awarded in fiscal year 2006. Grant funds can
only be used for infrastructure changes, such as planning,
collaborating, blended funding or developing service concepts, and
policies and procedures that support a transformation agenda. Funding
of direct mental health services must come from other sources. Grantees
work closely with other agencies, such as criminal justice, housing,
child welfare, Medicaid and education.
Federal funding for the State Incentive Grants supports States'
efforts to develop more comprehensive State mental health plans. These
plans facilitate the coordination of Federal, State, and local
resources to support effective and dynamic State infrastructure to best
serve persons with mental disorders.
Alternatives to Seclusion and Restraint State Infrastructure Grants.--
$2.5 million
Deaths due to seclusion and restraint in mental health and
substance abuse care are estimated at approximately 150 per year across
the United States. In addition to the risk of death and injury,
individuals who have experienced previous physical or sexual abuse can
suffer further traumatization when subjected to these practices.
The Alternatives to Seclusion and Restraint State Infrastructure
Grant Project (S/R-SIG) provides training, technical assistance and
other support to States, providers, facilities, and consumers and
families in order to reduce and eliminate seclusion and restraint
practices. SAMHSA awarded eight S/R-SIGs in fiscal year 2007. Most of
these States are implementing best practices alternatives in multiple
settings and with a variety of consumers.
National Center for Trauma-Informed Care.--$38 million
The psychological effects of violence and trauma in our society are
pervasive, highly disabling, yet largely ignored. Recent research
indicates that interpersonal violence and trauma, including sexual and/
or physical abuse, are widespread and have a major impact on a wide
range of social problems which are costly if not addressed.
The National Center for Trauma-Informed Care provides technical
assistance and training to publicly-funded agencies, programs, and
services in order to encourage an environment that supports and
empowers trauma survivors.

PROJECTS FOR ASSISTANCE IN TRANSITION FROM HOMELESSNESS (PATH)

NASMHPD recommends providing $61.1 million for PATH, which
represents a $7.8 million increase over fiscal year 2008 and a $1.4
million increase over the President's fiscal year 2009 request.
The PATH formula grant program provides funding to States,
localities and non-profit organizations to support individuals who are
homeless (or are at risk of homelessness) and have a serious mental
illness and/or a co-occurring substance abuse disorder. PATH is
designed to encourage the development of local solutions to the problem
of homelessness and mental illness through strategies such as
aggressive community outreach, case management and housing assistance.
Other important core services include referral for primary care, job
training and education. Surveys indicate that, in 2005, 463 PATH-funded
local agencies enrolled more than 82,000 individuals of diverse racial
and ethnic background with the most disabling mental illness. The most
common diagnoses were schizophrenia, psychotic disorders and affective
disorders. More than half of homeless consumers at first contact had
been homeless for more than 30 days.

NATIONAL INSTITUTE OF MENTAL HEALTH (NIMH)

NASMHPD recommends providing $1,498.6 million for NIMH, which
represents a $94.1 million increase over fiscal year 2008 and a $91.6
million increase over the President's fiscal year 2009 request.
The mission of NIMH is to reduce the burden of mental and
behavioral disorders through research on mind, brain, and behavior.
Mental illnesses are fundamentally brain disorders that affect
children, adolescents, and adults. Each year, more than 54 million
people experience significant symptoms caused by mental disorders. This
equates to one in every 20 adults who experience a disabling mental
disorder. Of the ten leading causes of disability in the United States
and internationally for individuals aged 15-44, four are mental
disorders: major depression, bipolar disorder, schizophrenia, and
obsessive-compulsive disorder. Left untreated, a mental disorder can
lead to more severe and more difficult to treat illnesses, and to the
development of co-occurring mental disorders.
NIMH is currently developing a Strategic Plan to: promote discovery
in the brain and behavioral sciences to fuel research on the causes of
mental disorders; determine when, where and how to intervene; develop
new and better interventions that incorporate the diverse needs of
people with mental disorders; and strengthen the public health impact
of NIMH-supported research. NIMH must achieve the fundamental
understanding of how mental disorders begin and progress, to discover
new treatments, and eventually prevent and cure them.

OTHER IMPORTANT FUNDING RECOMMENDATIONS

--Substance Abuse Prevention and Treatment Block Grant for $1,858.7
million
--Center for Substance Abuse Prevention Programs of Regional and
National Significance for $215.06 million
--Center for Substance Abuse Treatment Programs of Regional and
National Significance for $420 million
--SAMHSA Integrated Treatment for Co-Occurring Serious Mental Illness
and Substance Abuse Disorders for $4.14 million
--National Institute on Alcohol Abuse and Alcoholism (NIAAA) for
$465.5 million
--National Institute on Drug Abuse (NIDA) for $1,067.7 million

CONCLUSION

Thank you for your continued support for mental health initiatives.
If you have any questions, please do not hesitate to contact Elizabeth
Prewitt, NASMHPD's Director of Government Relations, 66 Canal Center
Plaza, Suite 302, Alexandria, VA, Fax: 703-548-9517, Phone: 703-682-
5196, [email protected].
______

Prepared Statement of the National Coalition for Homeless Veterans
introduction

The National Coalition for Homeless Veterans (NCHV) appreciates the
opportunity to submit testimony to the Senate Appropriations
Subcommittee on Labor, Health and Human Services, Education & Related
Agencies regarding the Homeless Veteran Reintegration (HVRP) and
Veteran Workforce Investment Programs (VWIP), administered by the U.S.
Department of Labor (DOL) Veterans' Employment and Training Service
(VETS).
Established in 1990, NCHV is a not for profit organization with the
mission of ending homelessness among veterans by shaping public policy,
promoting collaboration, and building the capacity of service
providers. NCHV is the only national organization wholly dedicated to
helping end homelessness among America's veterans.
In the years since its founding, NCHV's membership has grown to
over 280 organizations in 46 states, the District of Columbia, Guam and
Puerto Rico. As a network, NCHV members provide the full continuum of
care to homeless veterans and their families, including emergency
shelter, food and clothing, primary health care, addiction and mental
health services, employment supports, educational assistance, legal aid
and transitional housing.

HOMELESSNESS AMONG VETERANS

The homeless veteran assistance movement NCHV represents began in
earnest in 1990, but like a locomotive it took time to build the
momentum that has turned the battle in our favor. In partnership with
the Departments of Veterans Affairs (VA), DOL, and Housing and Urban
Development (HUD)--supported by the funding measures this committee has
championed--our community veteran service providers have helped reduce
the number of homeless veterans on any given night in America by 38
percent in the last 6 years.
This assessment is not based on the biases of advocates and service
providers, but by the federal agencies charged with identifying and
addressing the needs of the nation's most vulnerable citizens. To its
credit, the VA has presented to Congress an annual estimate of the
number of homeless veterans every year since 1994. It is called the
CHALENG project, which stands for Community Homelessness Assessment,
and Local Education Networking Groups. In 2003 the VA CHALENG report
estimate of the number of homeless veterans on any given day stood at
more than 314,000; in 2006 that number had dropped to about 194,000. We
have been advised the estimate in the soon-to-be published 2007 CHALENG
Report shows a continued decline, to about 154,000.
Part of that reduction can be attributed to better data collection
and efforts to avoid multiple counts of homeless clients who receive
assistance from more than one service provider in a given service area.
But in testimony before the House Committee on Veterans Affairs in the
summer of 2005, VA officials affirmed the number of homeless veterans
was on the decline, and credited the agency's partnership with
community-based and faith-based organizations for making that downturn
possible.
Though estimates are not as reliable as comprehensive ``point-in-
time'' counts, the positive trends noted in the CHALENG reports since
2003 are impressive. The number of contacts reporting data included in
the assessments is increasing, while the number of identified and
estimated homeless veterans is decreasing.
Other federal assessments of veteran homelessness that support our
testimony are found in HUD's 2007 Annual Homelessness Assessment
Report--which reported 18 percent of clients in HUD-funded homeless
assistance programs are veterans--and the 2000 U.S. Census, which
reported about 1.5 million veteran families are living below the
Federal poverty level. Earlier this year, the National Alliance to End
Homelessness published a report, based on information from these
resources, that estimated approximately 46,000 veterans meet the
criteria to be considered as ``chronically homeless.''
Despite the reduction in the ``point-in-time'' counts, the VA
reports the number of veterans experiencing homeless at sometime during
the year remains around 400,000. The VA serves about 25 percent or
100,000 of this population annually and NCHV member community-based
organizations (CBOs) serve 150,000 or 35 percent each year.
Consequently, almost 40 percent of the nation's homeless veterans still
do not receive the help they need. It is likely some of these veterans
are receiving assistance from other community resources, but there is
no way to determine how many or the nature of services being provided.

HOMELESS VETERANS REINTEGRATION PROGRAM APPROPRIATIONS

There are only two non-government veteran-specific homeless
assistance programs serving the men and women who represent nearly a
quarter of the nation's homeless population. The over-representation of
veterans among the homeless that is well documented and continues to
this day is the result of several influences, most notably limited
resources in communities with a heavy demand for assistance by single
parents and families with dependent children, the elderly and the
disabled.
The DOL HVRP and the VA Homeless Providers Grant and Per Diem were
created in the late 1980s to provide access to services for veterans
who were unable to access local, federally funded, ``mainstream''
homeless assistance programs. These programs are largely responsible
for the downturn in veteran homelessness reported during the last six
years, and must be advanced as essential components in any national
strategy to prevent future veteran homelessness. This testimony will
focus solely on the HVRP.
Administered by DOL-VETS, HVRP is a grant program that awards
funding to government agencies, private service agencies and community-
based nonprofits that provide employment preparation and placement
assistance to homeless veterans. As the only federal employment
assistance program targeted to this population, HVRP serves those who
may be shunned by other programs and services because of problems such
as severe post-traumatic stress disorder, long histories of substance
abuse, serious psychosocial problems, legal issues, and those who are
HIV-positive. These veterans require more time-consuming, specialized,
intensive assessment, referrals and counseling than is possible in
other programs that work with veterans seeking employment.
The employment focus of HVRP distinguishes it from most other
programs for the homeless, which concentrate on more immediate needs
such as emergency shelter, food and substance abuse treatment. While
these are critical components of any homeless program, and grantees are
required to demonstrate that their clients' needs in those areas are
met, the objective of HVRP programs is to enable homeless veterans to
secure and keep jobs that will allow them to re-enter mainstream
society as productive citizens.
The grants are competitive, which means applicants must qualify for
funding based on their proven record of success at helping clients with
significant barriers to employment to enter the work force and to
remain employed. In September 2007 this program was judged by the
Government Accountability Office as one of the most successful and
efficient programs in the DOL portfolio.
HVRP is unique and so highly successful because it doesn't fund
employment services per se, rather it rewards organizations that
guarantee job placement. DOL estimates HVRP will serve approximately
17,066 homeless veterans ($1,500 average cost per participant) and
approximately 10,240 homeless veterans will be placed into employment
($2,500 average cost per placement) at the fiscal year 2009 budgeted
level of $25.62 million. These costs represent a tiny investment for
moving a veteran out of homelessness, and off of dependency on public
programs. For Program Year 2006 (the most recent data available), the
program's entered employment rate was 65.3 percent and the 90-day
retained employment rate was 79.1 percent of the 65.3 percent who
entered employment. Those numbers meet or exceed the results produced
by most other DOL programs.
Recommendation.--HVRP is authorized at $50 million through fiscal
year 2009, yet the annual appropriation has been less than half that
amount. For fiscal year 2009, the proposed funding level of $25.6
million would fund only eleven percent of the overall homeless veteran
population. Based on the program's success and effectiveness in terms
of employment outcomes for one of the most difficult populations to
serve and its cost effectiveness as compared to other employment
placement programs, NCHV believes in fiscal year 2009 the program
should be funded at its full $50 million authorization level. We
believe the proven outcomes and efficiency of HVRP warrants this
consideration, and that DOL-VETS has the administrative capacity, will
and desire to expand the program. Employment is the key to transition
from homelessness to self sufficiency--this program is critical to the
campaign to end and prevent veteran homelessness.

INCARCERATED VETERANS TRANSITION PROGRAM

Between fiscal year 2004 and fiscal year 2007, HVRP was used to
fund the Incarcerated Veterans' Transition Program (IVTP), a joint DOL
and VA initiative authorized by Congress to assist veterans
incarcerated in their reentry to the community. IVTP was successful in
getting many veterans connected to health care, benefits, employment,
reunification with families and reducing the return to prison. During
the three years of operation 4,094 incarcerated veterans were assessed
by the seven pilot programs. Of those assessed, 2,191 veterans were
enrolled as participants, and of those enrolled (54 percent)
successfully entered employment earning an average of $10.00 an hour,
at an average cost per placement of $4,500.
Recommendation.--The success of the IVTP warrants both immediate
reauthorization and expansion of the pilot projects. Once authorized,
funds should be appropriated separately from HVRP to continue the work
of those who provide these beneficial and much needed services.

VETERANS WORKFORCE INVESTMENT PROGRAM APPROPRIATIONS

The Veterans Workforce Investment Program (VWIP) within DOL-VETS
provides grants to states and community-based, faith-based, and local
public organizations to offer workforce services targeted to veterans
with service connected disabilities, with active duty experience in a
war or campaign, recently separated from the service, or facing
significant barriers to employment (including homelessness). At least
80 percent of total VWIP funds are distributed via competition. VETS
may reserve 20 percent of total VWIP funds for discretionary grants.
VETS use these discretionary funds for studies, demonstration projects,
and additional funding to supplement competitive grants. The fiscal
year 2009 Budget recommendation for VWIP is $7.351 million with plans
to target 3,990 participants. This amount represents a 0 percent change
in funding for the program
The agencies receiving VWIP funds and those hoping to apply for
this program face the problem of resource scarcity. Due to funding
limitations, agencies and organizations in less than one-third of
states receive VWIP funds. The need for the type of targeted assistance
that VWIP offers is clearly needed by veterans in all states.
Additionally, caps on the size of grant awards make it difficult for
existing grantees to recruit and retain staff, which limits program
effectiveness and the collaborative process.
Recommendation.--A funding request of only $7.351 million for a
program that can help our nation's veterans become more economically
independent is a disgrace. NCHV asks Congress to fund this program at a
much higher level.

CONCLUSION

NCHV appreciates the opportunity to submit recommendations to
Congress regarding the DOL programs that assist homeless veterans. We
look forward to continuing to work with the Senate Appropriations
Subcommittee on Labor, Health and Human Services, Education and Related
Agencies to ensure our federal government does what is necessary to
prevent and end homelessness among our nation's veterans.
______

Prepared Statement of the National Congress of American Indians

On behalf of the tribal nations of the National Congress of
American Indians (NCAI), we are pleased to present testimony to the
Senate Committee on Appropriations, Subcommittee on Labor, Health and
Human Services, Education, and Related Agencies for the fiscal year
2009 Budget.
At the recent State of Indian Nations address, NCAI President Joe
Garcia spoke about the special place of honor children hold in American
Indian and Alaska Native cultures. He discussed the community's sacred
obligation to instill in them the traditional knowledge of past
generations so their innocence and laughter may develop into wisdom as
they become the leaders of the future. He stressed our belief that
every Indian child should have the right to community-based, culturally
appropriate services that help them grow up safe, healthy, and
spiritually strong--free from abuse, neglect, and poverty.
Unfortunately, all too often Native children are born into
circumstances that may be rich in culture and love, but fail to meet
their basic needs of health, shelter, safety, and education. Our
communities have a vision of a restored, safer, healthier Indian
Country for our children, but President Bush's budget request fails to
move us in the direction of that vision and will leave Indian children
in poverty and at risk.
This NCAI fiscal year 2009 testimony highlights key aspects of the
vision tribal leaders have expressed to create a safe, healthy Indian
Country for our children. In developing these recommendations we
recognize that chipping away at the years of under-funding and backlogs
that plague Indian Country can only be accomplished over time. The
requests that follow do not reflect the full need in Indian Country,
but rather are achievable first steps that we believe Congress and the
President should be able to support this year.

EDUCATION

One of the President's major focuses of the fiscal year 2009
Education budget was closing the achievement gap. However, the numerous
decreases proposed for programs that support Indian children's
education government-wide does not support this claim. A standard
argument of the current administration for eliminating tribal education
programs is that they are duplicative, claiming that our students are
eligible for funding through both the Department of Education and the
Bureau of Indian Education. However, each of these offices provide
different and essential services to ensure that our students are able
to achieve the same challenging academic standards as other students.
Funding levels for Indian education under the Office of Indian
Education remained stagnate at fiscal year 2008 levels. Of major
concern is the elimination of discretionary funding for Strengthening
Tribally Controlled Colleges and Universities (TCUs) and Strengthening
Alaska Native and Native Hawaiian Serving Institutions. One of the
primary arguments for their elimination was the substantial increase in
mandatory funding from 2007. However, this increase is a result of
funds made available from the College Cost Reduction and Access Act and
were meant to supplement not supplant TCU funding. This decision was
not made in consultation with the Tribes.
The administration proposed eliminating five tribal-specific
programs at the Department of Education: Education for Native-Hawaiians
($33.3 million), Alaska Native Education Equity Assistance ($33.3
million), Strengthening Alaska Native, Native Hawaiian Serving
Institutions ($11.6 million), Strengthening Tribal Colleges ($23.2
million), and Tribally Controlled Postsecondary Institutions ($7.4
million).
--Restore the 5 Indian specific programs eliminated by the DOE in the
fiscal year 2009 budget.
--Strengthening Tribal Colleges ($23.2 million)
--Tribally Controlled Postsecondary Institutions ($7.4 million)
--Education for Native-Hawaiians ($33.3 million)
--Alaska Native Education Equity Assistance ($33.3 million)
--Strengthening Alaska Native, Native Hawaiian Serving Institutions
($11.6 million)
--Increase funding 10 percent for 2 programs that remained stagnate
in DOE fiscal year 2009 budget.
--Impact Aid ($1,365)
--Indian Education Act, Title VII ($132 million)

HEALTH AND HUMAN SERVICES

Administration on Aging
The aging of our Nation's population will challenge Federal
programs such as those in the Older Americans Act. The tribal service
delivery systems, with social service programs and delivery systems
already stretched beyond capacity, face an impending human and
financial crisis. The crisis is exacerbated by inadequate funding,
remoteness of the areas, inadequate healthcare funding, increased
training needs for program staff, and lack of resources. According to
the National Indian Council on Aging, inadequate funding has made it
impossible for many Tribes to meet the five days a week home-delivered
meal requirement and has forced them to provide congregate meals only 2
or 3 days a week.
--Increase Older Americans Act, Title VI funding to $50 million to
help older American Indian elders to remain independent in
their homes and communities.
--Provide funding support of not less than $10 million to the Older
Americans Act, Title VI Native American aging programs to
support one-on-one counseling and enrollment assistance
regarding Medicare and Medicaid services.
--Provide funding support of $10 million for the Older Americans Act,
Title VII, Subtitle B ``Native American Provision for
Prevention of Elder Abuse and Neglect'' and the ``Allotment for
Vulnerable Elder Rights Protection Activities'' to protect
elder rights and implement elder rights activities in tribal
communities.
Administration for Children and Families
Head Start.--Indian Head Start programs are vital to many Native
communities, providing support to needy families, strengthening
revitalization efforts for tribal culture and language, and
contributing greatly to community-based healthcare strategies. Of the
approximately 562 federally recognized tribes, only 188 have Head Start
programs. That means 374 tribes do not have Head Start available for
their children. Indian Head Start has been receiving a declining
percentage of Head Start funds, now currently at about 2.7 percent. As
funding for Head Start over the last seven years has failed to keep
pace with inflation we continue to support efforts to increase funding
for Head Start by $1.072 billion in the coming year.
--To meet the expansion commitment made to the Indian Head Start
program in the reauthorization bill, increase Head Start
funding by no less than $155 million in fiscal year 2009.
Administration for Native Americans
Native Languages.--Throughout Indian Country tribes are combating
the loss of traditional languages by advocating for and instituting
language programs within their communities. Created to reverse
centuries of Federal policies meant to destroy Native languages, Native
language programs prevent the loss of tribal traditions and cultures
while assisting students in their academic endeavors. The tribal
students in immersion programs perform substantially better
academically, including on national tests, than Native students who
have not gone through such programs.
--Maintain or increase the $2 million provided for the Esther
Martinez Native American Languages program in the
Administration for Native Americans.
Substance Abuse and Mental Health Services Administration (SAMHSA)
Tribal youth between the ages of 15 and 24 commit suicide at a rate
more than three times the national average. In Alaska, Native youth
ages 19 and younger make up 19 percent of the population but comprise
60 percent of the suicides in that age group for the entire State. More
than half of those who committed suicide in Indian country had never
been seen by a mental health provider, yet 90 percent of all teens who
die by suicide suffer from a diagnosable mental illness at the time of
death.
American Indian and Alaska Native Grant Program.--The American
Indian and Alaskan Native specific grant program within SAMHSA was
authorized to award grants to Indian health programs to provide the
following services: prevention or treatment of drug use or alcohol
abuse, mental health promotion, or treatment services for mental
illness in the amount of $15 million. To date, these funds have never
been appropriated.
--Fully fund the American Indian and Alaska Native specific grant
program at $15 million.
Circles of Care.--Circles of Care is the only grant program in
SAMSHA where tribes do not need to compete with the States to receive
funding. This grant program was designed specifically to respond to the
inequity that tribes experience in trying to access Federal behavioral
health services funding compared to States and the lack of programming
that is specifically designed to respond to tribal communities and
their service delivery system realties.
--Fund Circles of Care at $5 million.

LABOR

The unemployment rate among American Indians is twice that for the
total U.S. population at 8.6 percent according to the U.S. Census
Bureau. On some reservations, the rate is drastically high. For
example, according to the Bureau of Indian Affairs, the Blackfeet Tribe
face a 69 percent unemployment rate and the San Carlos Apache Tribe
struggle with 81 percent of their population being unemployed.
Denali Commission.--The Employment and Training Administration
(ETA) provides tribes with grants to offer these valuable services to
their members. The purpose of the Denali Commission is to provide
critical utilities, infrastructure and economic support to distressed
rural communities in Alaska. This funding stream is being terminated in
the President's budget.
--Restore funding to Denali Commission $6,755 million.
Native American Programs.--One of the ETA's priorities for the
Native American Section 166 program in fiscal year 2009 will be to
integrate the program with the One-Stop Career Center system. The One-
Stop Career Center System does not allow flexibility for cultural
barriers and disability barriers to employment.
--Fully fund Native American Programs at $53 million.

CONCLUSION

NCAI realizes Congress must make difficult budget choices this
year. As elected officials, tribal leaders certainly understand the
competing priorities that you must weigh over the coming months.
However, the Federal Government's constitutional and treaty
responsibility to address the serious needs facing Indian Country are
unique. These responsibilities remain unchanged, whatever the economic
climate and competing priorities may be. We at NCAI urge you to make a
strong, across-the-board commitment to meeting the Federal trust
obligation by fully funding those programs that are vital to the
creation of vibrant Indian Nations. Such a commitment, coupled with
continued efforts to strengthen tribal governments and to clarify the
government-to-government relationship, truly will make a difference in
helping us to create stable, diversified, and healthy economies in
Indian Country.
______

Prepared Statement of the National Consumer Law \1\
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\1\ Pennsylvania Utility Law Project (PULP) on behalf of its low-
income clients, Esparanza Community Housing Corporation (CA), Community
Housing Development Corporation of North Richmond (CA).
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The Federal Low Income Home Energy Assistance Program (LIHEAP) \2\
is the cornerstone of government efforts to help needy seniors and
families avoid hypothermia in the winter and heat stress (even death)
in the summer. We are in a sustained period of much higher household
energy prices and expenditures and the demand for this program is
growing as increases in energy prices far outstrip the ability of low-
income households to pay. In light of the crucial safety net function
of this program in protecting the health and well-being of low-income
seniors, the disabled and families with very young children, we
respectfully request that LIHEAP be fully funded at its authorized
level of $5.1 billion for fiscal year 2009 and that advance funding of
$5.1 billion be provided for the program in fiscal year 2010.
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\2\ 42 U.S.C. 8621 et seq.
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THE COST OF HOME ENERGY REMAINS AT RECORD HIGH LEVELS

Residential heating expenditures remain at record high levels. The
average residential heating expenditures are projected to be 95 percent
higher for heating oil, 28 percent higher for natural gas, 66 percent
higher for propane, and 18.5 percent higher for electricity than the
averaged expenditures for 2001-2006. The current U.S. Department of
Energy short-term forecast of residential heating expenditures predicts
that, on average, residential bills are still among the highest on
record. The cost of electricity, used for both heating and cooling, has
been increasing rapidly due, in part, to increases in the price of
natural gas used to generate electricity in many power plants and the
lifting of price caps in States that restructured their electric
markets. In a brief span of time, energy bills have walloped low-income
households. The effect of these continually rising prices on low-income
households is devastating.

STATES' DATA ON ELECTRIC AND NATURAL GAS DISCONNECTIONS AND ARREARAGES
SHOW THAT MORE HOUSEHOLDS ARE FALLING BEHIND

The steady and dramatic rise in residential energy costs has
resulted in increases in electric and natural gas arrearages and
disconnections. For example, in Rhode Island there were over 30,000
residential service disconnections in 2007, over 5,000 more than in any
previous year. Of those 30,000 shutoffs, over 5,200 were not restored.
Similarly, the gap between service disconnections and reconnections has
been increasing over time, suggesting increased durations of service
loss and greater numbers of households that do not regain access to
service under their own accounts as demonstrated by data from Iowa.\3\
---------------------------------------------------------------------------
\3\ Chart provided by the Iowa Bureau of Energy Assistance.
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Although there are winter utility shut-off moratoria in place in
many States, not every home is protected against energy shut-offs in
the middle of winter. As we approach the lifting of winter shut-off
moratoria, we expect to see a wave of disconnections as households are
unable to afford the cost of the energy bills. The chart illustrating
Iowa's shut-off and reconnection data shows the typical sharp increase
in disconnections in the spring once the winter moratorium ends in a
State. Low-income families are falling further behind as we endure year
after year of rising home energy prices. We expect the disconnection
peaks to grow and the gap between disconnections and reconnections to
also grow.
Iowa.--While the basic LIHEAP block grant for Iowa is at last
year's levels, this winter has been colder than in the past several
years and natural gas prices remain high and propane prices are around
a third higher this year than the same point last year. In February
2008, the number of low-income households with past due energy accounts
and the total amount of the low-income arrears were the second highest
on record for this time of year since these data have been tracked. As
an indication of the effect of long term effect of rising home energy
prices, the total number of LIHEAP households in arrears in February
2008 was 67 percent higher than 5 years ago at this point in time and
159 percent higher than in February 1999. The total amount of
arrearages of LIHEAP households has also grown sharply due to the
increase in prices. By February 2008, the total amount of LIHEAP
household arrears had increased 58 percent from the same period 5 years
ago and 176 percent compared to arrears in February 1999. The total
number of LIHEAP households served in fiscal year 2009 is expected to
exceed the number of households served last year.\4\
---------------------------------------------------------------------------
\4\ Conversations with the Director of the Iowa Bureau of Energy
Assistance (March 19, 2008).
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Ohio.--Ohio has experienced a steady and dramatic demand for low-
income energy assistance. The number of households entering into the
State's low-income energy affordability program, the Percentage of
Income Payment Program (PIPP), increased 7 percent from January 2007 to
January 2008. The increase is an even more dramatic 75 percent between
January 2002 and January 2008. The total dollar amount owed (arrearage)
by low-income PIPP customers increased 14 percent from January 2007 to
January 2008 and 84 percent when comparing PIPP customer arrears from
January 2002 to January 2008. The growing demand is also apparent from
the frontlines. One community action agency in Ohio reports that: ``We
have been busy with HEAP this winter . . . as always . . . but this
year even busier than last. There are still many people in the lobby
every day seeking this assistance, and many we have never seen before.
It is an indication of how serious the struggle is for Ohioans this
year.'' Ohio has experienced an increase in enrollment for the regular
LIHEAP block grant program (HEAP) from 2005 to 2007 with 262,561 total
households in 2005; 354,371 in 2006; 360,656 in 2007 and expects to see
an increase in enrollment by the end of this program year as well.''
\5\
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\5\ Public Utilities Commission of Ohio and correspondence with
staff at the Ohio Community Development Division (March 11, 2008).
---------------------------------------------------------------------------
Pennsylvania.--Utilities in Pennsylvania that are regulated by the
Pennsylvania Public Utility Commission (PA PUC) have established
universal service programs that assist utility customers in paying
bills and reducing energy usage. Even with these programs, electric and
natural gas utility customers find it difficult to keep pace with their
energy burdens. The PA PUC estimates that more than 16,857 households
entered the current heating season without heat-related utility
service--this number includes about 3,095 households who are heating
with potentially unsafe heating sources such as kerosene or electric
space heaters and kitchen ovens. In mid-December 2007, an additional
11,468 residences where electric service was previously terminated were
vacant and over 5,826 residences where natural gas service was
terminated were vacant. In 2007, the number of terminations increased
44 percent compared with terminations in 2004. As of December 2007,
19.2 percent of residential electric customers and 16.9 percent of
natural gas customers were overdue on their energy bills.\6\
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\6\ Pennsylvania Public Utility Commission Bureau of Consumer
Services.
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LIHEAP IS A CRITICAL SAFETY NET PROGRAM FOR THE ELDERLY, THE DISABLED
AND HOUSEHOLDS WITH YOUNG CHILDREN

Preliminary estimates by the National Energy Assistance Directors'
Association are that fiscal year 2008 participation rates will remain
near the same levels as in fiscal year 2007, reaching an estimated 5.5
million households.\7\ Yet, energy prices have been on a continued
upward climb, eroding LIHEAP's purchasing power. LIHEAP is vital to
poor seniors: Poor seniors who cut back on energy usage, jeopardize
their health and safety. In general, elder households use less total
household energy than non-elderly households, which is attributable
primarily to the smaller dwelling units. However, poor elderly
households use markedly less energy than non-poor elderly households.
The disparity in usage between the poor elderly and the non-poor
elderly is present in each of the Census regions: with the poor elderly
using 37 percent less in the Northeast Census Region, 40 percent less
in the Midwest Census Region, 20 percent less in the South Census
Region and 54 percent less in the West Census region. Even worse, poor
elderly households, on average, consume 12 percent more energy per
square foot of living space (this measurement is also referred to as
energy intensity) than non-poor elderly households. This disparity is
attributable to the poorly weatherized living spaces and the use of
old, inefficient heating equipment and appliances.\8\ In the summer,
the inability to keep the home cool can be lethal, especially to
seniors. According to the CDC, in 2001 300 deaths were caused by
excessive heat exposure, and seniors and young children are
particularly vulnerable to heat stress.\9\ The CDC also notes that air-
conditioning is the number one protective factor against heat-related
illness and death.\10\ LIHEAP assistance helps these vulnerable seniors
keep their homes at safe temperatures during the winter and summer and
also funds low-income weatherization work to make homes more energy
efficient.
---------------------------------------------------------------------------
\7\ National Energy Assistance Directors' Association, Testimony of
the National Energy Assistance Directors' Association on the Low Income
Home Energy Assistance Program Before the Subcommittee on Health,
Education, Labor and Pensions, U.S. Senate (March 5, 2008).
\8\ NCLC analysis of U.S. Energy Information Administration, 2001
Residential Energy Consumption Survey data on elderly energy
consumption and expenditures.
\9\ CDC, ``Extreme Heat: A Prevention Guide to Promote Your
Personal Health and Safety'' available at www.bt.cdc.gov/disasters/
extremeheat/heat_guide.asp.
\10\ Id.
---------------------------------------------------------------------------
Dire Choices and Dire Consequences.--Recent national studies have
documented the dire choices low-income households are faced with when
energy bills are unaffordable. Low-income households faced with
unaffordable energy bills cut back on necessities such as food,
medicine and medical care.\11\ The U.S. Department of Agriculture
recently released a study that shows the connection between low-income
households, especially those with elderly persons, experiencing very
low food security and heating and cooling seasons when energy bills are
high.\12\ The U.S. Conference of Mayor's December 2007 Status Report on
Hunger and Homelessness in America's Cities cites utility assistance
programs as one of the most common ways to reduce hunger.\13\ A
pediatric study in Boston documented an increase in the number of
extremely low weight children, age 6 to 24 months, in the three months
following the coldest months, when compared to the rest of the
year.\14\ Clearly, families are going without food during the winter to
pay their heating bills, and their children fail to thrive and grow.
When people are unable to afford paying their home energy bills,
dangerous and even fatal results occur. Families resort to using unsafe
heating sources, such as space heaters, ovens and burners, all of which
are fire hazards.\15\ In the summer, the inability to afford cooling
bills can result in heat-related deaths and illness.
---------------------------------------------------------------------------
\11\ See e.g., National Energy Assistance Directors' Association,
2005 National Energy Assistance Survey, Tables in section IV,G
(September 2005) To pay their energy bills, 20 percent of LIHEAP
recipients went without food, 35 percent went without medical or dental
care, 32 percent did not fill or took less than the full dose of a
prescribed medicine). Available at http://www.neada.org/comm/surveys/
NEADA_2005_National_Energy_Assistance_Survey.pdf.
\12\ Mark Nord and Linda S. Kantor, Seasonal Variation in Food
Insecurity Is Associated with Heating and Cooling Costs Among Low-
Income Elderly Americans, The Journal of Nutrition, 136 (Nov. 2006)
2939-2944.
\13\ Exhibit 1.4 shows 60 percent of cities in the study cited
utility assistance programs as a way to reduce hunger.
\14\ Deborah A. Frank, MD et al., Heat or Eat: The Low Income Home
Energy Assistance Program and Nutritional and Health Risks Among
Children Less Than 3 years of Age, AAP Pediatrics v.118, no.5 (Nov.
2006) e1293-e1302. See also, Child Health Impact Working Group,
Unhealthy Consequences: Energy Costs and Child Health: A Child Health
Impact Assessment Of Energy Costs And The Low Income Home Energy
Assistance Program (Boston: Nov. 2006) and the Testimony of Dr. Frank
Before the Senate Committee on Health, Education, Labor and Pensions
Subcommittee on Children and Families (March 5, 2008).
\15\ John R. Hall, Jr., Home Fires Involving Heating Equipment:
Space Heaters (In 2005 there were an estimated 19,700 home fires
involving space heaters resulting in 490 deaths, 980 injuries and $518
million in property damage) National Fire Protection Association (Nov.
2007).
---------------------------------------------------------------------------
LIHEAP is an administratively efficient and effective targeted
health and safety program that works to bring fuel costs within a
manageable range for vulnerable low-income seniors, the disabled and
families with young children. LIHEAP must be fully funded at its
authorized level of $5.1 billion in fiscal year 2009 in light of the
steady increase in home energy costs and the increased need for
assistance to protect the health and safety of low-income families by
making their energy bills more affordable. In addition, fiscal year
2010 advance funding would facilitate the efficient administration of
the State LIHEAP programs. Advanced funding provided certainty of
funding levels to States to set income guidelines and benefit levels
before the start of the heating season. States can also plan the
components of their program year (e.g., amounts set aside for heating,
cooling and emergency assistance, weatherization, self-sufficiency and
leveraging activities).
______

Prepared Statement of the National Council on Aging

SECTION I--BASIC PROGRAMS IN THE OLDER AMERICANS ACT

The Older Americans (OAA) is the backbone of services to America's
aging population. First enacted in 1965, the OAA helps seniors to stay
independent and healthy through a wide range of services and programs,
including: home-delivered meals, congregate meals, senior center
services, transportation, support for family caregivers, home and
community services, health promotion, disease prevention, nursing home
ombudsmen, grants for Native Americans, community service employment
for low-income older workers, and numerous program innovations. With
strong support from the National Council on Aging (NCOA) and many other
aging-related organizations, Congress reauthorized the OAA in the fall
of 2006, strengthening it in many ways and adding important new
initiatives.
These are the major components of the OAA, receiving more than 92
percent of the annual appropriations:
--Supportive Services (Title III-B).--Services that enable older
persons to remain in their own homes and age in place, rather
than enter institutions. The most frequently provided services
are home health, personal care and transportation.
--Nutrition Services (Title III-C).--Congregate and home-delivered
meals, increasing the health, functionality and quality-of-life
for millions of seniors. Approximately 40 percent of home-
delivered meal providers have waiting lists.
--National Family Caregiver Support Program (Title III-E).--Services
to help ease the burdens of caregivers, including respite care,
counseling and supplemental services.
--Senior Community Service Employment Program (Title V, known as
SCSEP).--Part-time employment and training for low-income
workers, helping to lift them out of poverty and restore a
sense of self-worth. SCSEP strengthens communities through
community service job placements.
All OAA programs are under the Administration on Aging of the
Department of Health and Human Services, except for the SCSEP, which is
under the Department of Labor (DoL). Total appropriations for all of
OAA in fiscal year 2008 come to $1.935 billion--$1.413 billion to the
Administration on Aging (AoA) and $522 million to DoL for SCSEP.
OAA funding was virtually frozen (with very small increases) from
fiscal year 2002 to fiscal year 2005, and then cut in fiscal year 2006.
This frozen funding eroded many services because of rising prices, and
simultaneously diminished the ability of OAA programs to reach the
growing population of seniors in need. In fiscal year 2007 Congress
increased OAA funding by a small amount, adding $20 million in
nutrition services and $51.3 million for SCSEP to cover the increase in
the Federal minimum wage. The fiscal year 2008 increases were similar
to fiscal year 2007: a modest $30.4 million increase for nutrition and
some other AoA programs, plus $38.0 million for SCSEP's minimum wage
increase. Though the SCSEP increases of the past two cycles sound
significant, they have not expanded the program nor helped it to keep
up with inflation, but have only provided sufficient funds to pay the
same number of enrollees at the higher minimum wage level.
If OAA funding since fiscal year 2002 had simply kept pace with
inflation and the growing number of seniors, it would be $380 million
higher in fiscal year 2008 than it actually is. Looked at another way,
the total increase in appropriations from fiscal year 2002 to fiscal
year 2008 for all OAA programs was less than 8 percent. However, the
mandated minimum wage expansion for SCSEP enrollees consumed about two-
thirds of the total funding increase; if the minimum wage dollars are
not included in the calculation, all OAA programs combined received
total increases of less than 3 percent in six years, far less than the
rise in inflation in that period.
The OAA urgently needs a significant boost in funding, for the
following reasons:
--OAA programs help to preserve the health and independence of our
Nation's seniors, enabling them to remain in their own homes
longer.
--Spending money on OAA programs saves taxpayers' dollars in the long
run, by reducing premature nursing home placements, averting
malnutrition and controlling chronic health conditions.
--With flat funding, service providers are constantly faced with
difficult choices about which services to cut. Rising food and
gas prices hit nutrition programs hard.
--Strengthening the OAA was the top priority of the delegates to the
once-per-decade 2005 White House Conference on Aging, and
Congress responded with the 2006 reauthorization. Congress
needs to take the next step and provide substantial increases
in funding for the#1 priority of those bipartisan delegates.
In view of the above, the National Council on Aging urges Congress
to increase funding for all existing OAA programs by 9 percent in
fiscal year 2009. An increase of 9 percent over fiscal year 2008 would
be $174 million--$127 million for AoA and $47 million for the SCSEP in
DoL.

SECTION II--RECENTLY-ADDED PROGRAMS IN THE OLDER AMERICANS ACT

The reauthorization of the OAA, signed into law in October of 2006,
added three valuable new initiatives that deserve significant funding:
(1) The bill authorized a National Center on Senior Benefits
Outreach and Enrollment under section 202(20)(B) that will marshal
person-centered, cost effective techniques to enroll low-income seniors
in a range of benefits programs for which they are eligible.
Participation rates in current needs-based programs are unacceptably
low:
--Up to 4.2 million low-income beneficiaries eligible for Medicare
prescription drug Low-Income Subsidy are still not receiving
it. An August 2007 survey found that almost half of low-income
Medicare beneficiaries still are not aware of the program.
--Enrollment in the Specified Low-Income Medicare Beneficiary (SLMB)
program, which pays for increasing Medicare Part B premiums, is
estimated to be only 13 percent.
--After more than 40 years, participation rates by eligible seniors
in the Food Stamps program have been estimated at only about 30
percent.
Enrolling in these programs for which they are eligible could help
poor, vulnerable seniors to afford basic needs and emerge from deep and
chronic poverty. Last year, the National Center received initial,
start-up funding of $1.97 million. NCOA urges that funding of $4
million be provided to the National Center in fiscal year 2009, which
will work with experienced community based organizations to conduct
one-on-one counseling, provide training and technical assistance,
maintain web-based decision support tools, and develop a clearinghouse
on best practices.
(2) The OAA amendments authorized expansion of evidence-based
health promotion and disease prevention activities under AoA's Choices
for Independence initiative, establishing a national technical
assistance program and directing the aging network to develop evidence-
based educational and behavioral change programs to reduce the risk of
injury, disease, and disability. Evidence-based programs help older
people better manage their chronic conditions, improve their physical
and mental health, and reduce their risk of falls. The Stanford Chronic
Disease Self-Management Program (CDSMP), has provided ample evidence
that such initiatives produce significant Medicare and Medicaid savings
for the Federal Government.
The Choices initiative also funds Aging and Disability Resource
Centers (ADRCs) to make it easier for people to access health and long-
term care services and make informed decisions about options that best
meet their needs, and consumer-directed Nursing Home Diversion programs
to enable older people at risk of institutionalization to receive
flexible services that will sustain community living and reduce the
potential for depleting their resources and relying on Medicaid for
supports. NCOA believes that the Choices for Independence program
should be funded for at least $28 million in fiscal year 2009. We
strongly oppose the proposal to limit the program to five States.
(3) The OAA amendments under section 417 authorized AoA to conduct
demonstration projects that provide opportunities for older adults to
participate in multigenerational and civic engagement activities
designed to meet critical community needs, including support for
grandparents raising children and for volunteers working with families
who have a child with a disability or chronic illness. NCOA strongly
supported these initiatives when they were passed, because they will
bring significant benefits to youth, older adults and communities. For
example:
--Youth involved in intergenerational mentoring programs demonstrated
improved grades, significant decreases in school absences, and
suspensions from school, as well as decreases in drug and
alcohol abuse.
--Older adults who volunteer live longer and with greater functional
ability and better physical and mental health than their non-
volunteering counterparts.
--Investments in civic engagement projects contribute to a
community's economy by mobilizing volunteers. Volunteer time is
estimated at $18.77/hour.
--Healthy adults living longer provide talent and resources to the
health and aging networks, enabling them to increase services
and the quality of care to vulnerable elders.
--Interacting with older adults enables youth to develop social
networks, a sense community service, communication skills,
problem solving abilities, and positive attitudes on aging.
The demonstration projects currently receive about $1 million in
funding. We urge that this be increased to $9 million. In addition, $1
million should be provided to develop a national blueprint for civic
engagement for older adults, as described in Section 202(c) of the OAA.
Summarizing the three initiatives above, the National Council on
Aging urges Congress to appropriate sufficient funding in fiscal year
2009 for these new programs in the 2006 reauthorization:
--$4 million for the National Center on Senior Benefits Outreach and
Enrollment;
--At least $28 million for the Choices for Independence initiative;
and
--$10 million for multigenerational and civic engagement activities.
section iii--falls prevention and reduction among older americans
Each year, one in three Americans aged 65 and older falls; about 30
percent of those who fall require medical treatment. In 2005,
approximately 1.8 million older adults were treated in emergency
departments for nonfatal injuries from falls, more than 433,000 were
hospitalized, and nearly 16,000 died. Falls are the leading cause of
both fatal and nonfatal injuries for those 65 and over. According to
the Centers for Disease Control and Prevention (CDC), the mortality
rate from falls among older Americans increased 39 percent from 1999 to
2005.
The costs of these falls are enormous. CDC reports that $19 billion
annually is spent on treating the elderly for the effects of falls: $12
billion for hospitalization, $4 billion for emergency department
visits, and $3 billion for outpatient care. Most of these expenses are
paid for through Medicare. If we cannot stem the current rate of
increase in senior falls, it is projected that the direct treatment
costs will reach $43.8 billion annually in 2020.
Many of the falls that seniors suffer are preventable, and the
results of recent pilot programs offer some promising directions for
cost-effective interventions, such as: comprehensive clinical
assessments, exercise programs to improve balance and strength,
management of medications, correction of vision, and reduction of home
hazards.
CDC is the lead Federal agency for injury prevention and control
through its National Center for Injury Prevention and Control (NCIPC).
Currently the Federal Government allocates only $1 million per year to
NCIPC to address a problem that costs us more than $19 billion a year.
Thanks to the leadership of Senators Enzi and Mikulski, S. 845, the
Safety of Seniors Act, passed the Senate and House and is awaiting the
President's signature. The Act encourages the Secretary to conduct
demonstration projects, public education and research on falls
prevention.
The National Council on Aging urges Congress to appropriate an
additional $20.7 million in the fiscal year 2009 Labor-HHS-Education
bill for CDC's NCIPC to carry out falls prevention and reduction
activities. Thirty national organizations support this request,
including AARP, the Home Safety Council, the National Safety Council,
the American Physical Therapy Association, the American Occupational
Therapy Association, the American Association of Homes and Services for
the Aging, Easter Seals, the National Association for Hospice and Home
Care, the National Association of Social Workers, and the National
Committee to Preserve Social Security and Medicare.
______

Prepared Statement of the National Federation of Community Broadcasters

Thank you for the opportunity to submit testimony to this
subcommittee regarding the appropriation for the Corporation for Public
Broadcasting (CPB). As the President and CEO of the National Federation
of Community Broadcasters (NFCB), I speak on behalf of 250 community
radio stations and related individuals and organizations across the
country. Nearly half our members are rural stations and half are
controlled by people of color. In addition, our members include many of
the new Low Power FM stations that are putting new local voices on the
airwaves. NFCB is the sole national organization representing this
group of stations which provide independent, local service in the
smallest communities of this country as well as the largest
metropolitan areas.
In summary, the points we wish to make to this Subcommittee are
that NFCB:
--Requests $483 million in funding for CPB for fiscal year 2011;
--Requests $40 million in fiscal year 2009 for conversion of public
radio and television to digital broadcasting;
--Requests $27 million in fiscal year 2009 for replacement of the
radio interconnection system;
--Requests that advance funding for CPB is maintained to preserve
journalistic integrity and facilitate planning and local
fundraising by public broadcasters;
--Rejects the Administration's proposal to rescind $200 million of
already-appropriated 2009 CPB funds and $220 million from 2010
funds;
--Supports CPB activities in facilitating programming and services to
Native American, African American and Latino radio stations;
--Supports CPB's efforts to help public radio stations utilize new
distribution technologies and requests that the Subcommittee
ensure that these technologies are available to all public
radio services and not just the ones with the greatest
resources.
Community Radio fully supports the appropriation of $483 million in
Federal funding for the Corporation for Public Broadcasting in fiscal
year 2011.--Federal support distributed through CPB is an essential
resource for rural stations and for those serving communities of color.
These stations provide critical, life-saving information to their
listeners and are often in communities with very small populations and
limited economic bases, thus the community is unable to financially
support the station 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. Federal
funding allows an alternative to exist in these larger markets.
For over 30 years, CPB appropriations have been enacted 2 years in
advance. This insulation has allowed pubic broadcasting to grow into a
respected, independent, national resource that leverages its Federal
support with significant local funds. Knowing what funding will be
available in advance has allowed local stations to plan for programming
and community service and to explore additional non-governmental
support to augment the Federal funds. Most importantly, the insulation
that advance funding provides ``go[es] a long way toward eliminating
both the risk of and the appearance of undue interference with and
control of public broadcasting.'' (House Report 94-245.)
For the past few years, CPB has increased support to rural stations
and committed resources to help public radio take advantage of new
technologies such as the internet, satellite radio and digital
broadcasting. We advocate for these activities which we feel better
serve the American people but want to ensure that smaller stations with
more limited resources are not left behind in this technological
transition. We ask that the subcommittee include language in the
appropriation that will make certain funds are available to help the
entire public radio system, particularly rural and minority stations,
utilize the new technologies.
NFCB commends CPB for the leadership it has shown in supporting and
fostering programming services to Latino stations and Native American
stations. For example, 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
Spanish and English. At the same time, Native Voice One (NV1) is
distributing politically and culturally relevant programming to Native
American stations. There are now over 33 stations in the United States
controlled by and serving Native Americans.
Two years ago, CPB funded the establishment of the Center for
Native American Public Radio (CNAPR). After 3 years in operation, CNAPR
has assisted with the renewal of licenses and expansion of the
interconnection system to all Native stations and has advanced the
opportunity for Native Nations to own their own, locally controlled
station. In the process of this work, it was recognized that radio
would not be available to all Native Nations and broadband and other
new technologies would be necessary. CNAPR has been repositioned as
Native Public Media (NPM) and is working hard to double the number of
Native stations within the next three years. These stations are
critical in serving local, isolated communities (all but one are on
Indian Reservations) and in preserving cultures that are in danger of
being lost. CPB's 2003 assessment recognized that ``. . . Native Radio
faces enormous challenges and operates in very difficult
environments.'' CPB funding is critical to these rural, minority
stations. The funding of the Intertribal Native Radio Summit by CPB in
2001 helped to gather these isolated stations together into a system of
stations that can support one another. The CPB assessment goes on to
say ``Nevertheless, the Native Radio system is relatively new, fragile
and still needs help building its capacity at this time in its
development.'' NPM promises to leverage additional new funding to
ensure that these stations continue providing essential services to
their communities.
CPB also funded a Summit for Latino Public Radio which took place
in September 2002 in Rohnert Park, California, home of the first Latino
public radio station. This year, CPB has provided funding to the Latino
Public Radio Consortium to develop a Strategic Plan and Business Model
to expand the service of public radio to the Latino population.
CPB plays an extremely important role in the public and Community
Radio system: They convene 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. And, they provide funding for
programming, new ventures, expansion to new audiences, and projects
that improve the efficiency of the system. (This is particularly
important at a time when there are so many changes in the radio and
media environment with media consolidation and new distribution
technologies.)
Community Radio supports $40 million in fiscal year 2009 for the
conversion to digital broadcasting by public radio and television.--
While public television's digital conversion needs are mandated by the
FCC, public radio is converting to digital to provide more public
service and to keep up with commercial radio. The Federal
Communications Commission has approved a standard for digital radio
transmission and to allow multicasting. CPB has provided funding for
615 radio transmitters to convert to digital. Of those, 365 have
completed their conversion and 117 are multicasting 153 streams. The
development of second and third audio channels will potentially double
or triple the service that public radio can provide listeners,
particularly in unserved and underserved communities. However, this
initial funding still leaves nearly 200 radio transmitters that must
ultimately convert to digital or become obsolete.
Federal funds distributed by the CPB should be available to all
public radio stations eligible for Federal equipment support through
the Public Telecommunications Facilities Program (PTFP) of the National
Telecommunications and Information Agency in the Department of
Commerce. In previous years, Federal support for public radio has been
distributed through the PTFP grant program. The PTFP criteria for
funding are exacting, but allow for wider participation among public
stations. Stations eligible for PTFP funding and not for CPB funding
include small-budget, rural, and minority-controlled stations and the
new Low Power FM service.
Community Radio strongly supports $27 million in fiscal year 2009
for the public radio interconnection system. Public radio pioneered the
use of satellite technology to distribute programming. The Public Radio
Satellite System's recently-launched ContentDepot continues this
tradition of cutting edge technology. Satellite capacity supporting it
must be renewed and upgrades are necessary at the station and network
operations levels. Interconnection is vital to the delivery of the
high-quality programming that public broadcasting provides to the
American people. This is the second year of a 3-year request for $73
million for the complete project.
We are in a period of tremendous change. The digital movement is
transforming the way we do things; new distribution avenues like
digital satellite broadcasting and the internet are changing how we
define our business; and, the concentration of ownership in commercial
radio makes public radio in general, and Community Radio in particular,
more important as a local voice than we have ever been. New Low Power
FM stations are providing local voices in their communities an avenue
of expression, and many new community stations will be going on the air
within the next few years. Community Radio is providing essential local
emergency information, programming about the local impact of major
global events taking place, and culturally-relevant information and
entertainment in native languages, as well as helping to preserve
cultures that are in danger of dying out. During the natural disasters
of recent years, radio proved once again that it is the most dependable
and available medium for getting emergency information to the public.
During these challenging times, the role of CPB as a convener of
the system becomes even more important. The funding that it provides
will allow smaller stations to participate alongside larger stations
that have more resources as we move into a new era of communications.
Thank you for your consideration of our testimony.
______

Prepared Statement of the National League for Nursing

The National League for Nursing (NLN) is the sole organization
representing leaders in nursing education and nurse faculty across all
the types of nursing programs in the United States. With more than
1,200 nursing schools and health care agencies, some 25,000 individual
members comprising nurses, educators, administrators, public members,
and 18 constituent leagues, the National League for Nursing is the
premier organization--established 115 years ago--dedicated to
excellence in nursing education that prepares the nursing workforce to
meet the needs of our diverse populations in an ever-changing health
care environment. The NLN appreciates the opportunity to discuss the
status of nursing education and the damage that could ensue to patients
and our Nation's health care by the ill-considered cuts aimed at the
Nursing Workforce Development Programs, authorized under Title VIII of
the Public Health Service Act.
The NLN endorses the Subcommittee's past policy strategies for
health care capacity-building via nursing education. We likewise
respect your recognition of the requisite role nurses play in the
delivery of cost-efficient health care services and the generation of
quality health outcomes.
The National League for Nursing is disturbed, however, that the
tenth-year and counting nursing shortage is outpacing the level of
Federal resources and investments that have been expended to help
alleviate the nationwide nursing scarcity. The NLN is gravely concerned
that the Administration's proposed fiscal year 2009 appropriations for
nursing education are inconsistent with the health care reality facing
our Nation. The President's budget proposes a funding decrease of
$46.193 million (or 29.6 percent) for the Health Resources and Services
Administration's (HRSA) Nursing Workforce Development Programs. This
budget cut will diminish education and development, a shortsighted and
hazardous course of action that potentially further jeopardizes the
delivery of health care for the people in the United States. Thirty-
five years ago in 1973, during another less serious nursing shortage,
Congress appropriated nearly $161 million for nurse education programs.
In today's dollars, that amount would be worth more than $742.8
million--4.76 times the amount the Federal Government currently is
spending on Title VIII programs.
The NLN contends that the Federal strategy should be to broaden,
not curtail, Title VIII initiatives by increasing investments to be
consistent with national demand. We urge the Subcommittee to fund the
Title VIII programs at a minimum level of $200 million for fiscal year
2009. The NLN also advocates that Sec. 811 of Title VIII--Advanced
Education Nursing Program--be restored and funded at an augmented level
equal to the other Title VIII programs.

NURSE SHORTAGE AFFECTED BY FACULTY SHORTAGE

The Subcommittee is well aware that today's nursing shortage is
real and unique from any experienced in the past with an aging
workforce and too few people entering the profession at the rate
necessary to meet growing health care requirements. In its biennial 10-
year employment projections for 2006-2016, the U.S. Department of
Labor's Bureau of Labor Statistics (BLS) reported that during that 10-
year period, the system is projected to generate 587,000 new registered
nurses (RN) jobs, with hundreds of thousands of job openings resulting
from the need to replace experienced nurses who will leave the
occupation. BLS's model-based findings estimate that employment of RNs
is expected to grow 23 percent from 2006 to 2016, a much faster rate
than the average for all occupations. The NLN research provides
evidence of a strong correlation between the inability of nursing
programs to keep pace with the demand for new RNs and the shortage of
nurse faculty. Without faculty to educate our future nurses, the
shortage cannot be resolved.
The NLN's Nursing Data Review 2005-2006: Baccalaureate, Associate
Degree, and Diploma Program revealed that applications to RN programs
fell a notable 8.7 percent during 2005-06, down from a peak in
applications a year earlier. The drop is suspected to be the result of
``applicant discouragement'' defined by the NLN as widespread awareness
of the difficulty of gaining entry to nursing school, fueled by the
continuing crippling shortage of nurse educators.
Despite the reduced number of applications, many factors indicate
that opportunities to obtain a nursing education are still in short
supply. Eighty-eight thousand (88,000) qualified applications--or one
out of every three qualified applications submitted to nursing
education programs this year--were denied due to lack of capacity.
Baccalaureate degree programs turned away 20 percent of their
applications, while associate degree programs turned away 32.7 percent.
On a positive front, the NLN's data show a marked increase in the
percentage of graduating pre-licensure students who are members of
racial or ethnic minority groups, with the increase distributed across
all racial and ethnic categories: Asians, African Americans, Hispanics,
and American Indians. After three consecutive years in which the
proportion of minorities entering the RN workforce stagnated at
approximately 20 percent, the fraction of minority graduates jumped to
24.5 percent in 2006. Research increasingly links minority health
disparities to a lack of cultural competence on the part of health care
providers, who often differ from their patients with respect to racial-
ethnic background. This concern has been particularly acute within the
RN workforce where the percentage of minorities has been slow to
increase, and only exceeded 10 percent in the last decade.
Additionally, the percentage of men graduating from basic RN programs
has exhibited a small but steady growth trend over the past 3 years,
with men reaching just over 12.1 percent of graduates in 2006.

TRENDS STRESSING FACULTY SHORTAGE

The NLN's research, reported in its Nurse Educators 2006: A Report
of the Faculty Census Survey of RN and Graduate Programs, indicated
that the nurse faculty vacancies in the United States continued to grow
even as the numbers of full- and part-time educators increased. The
estimated number of budgeted, unfilled, full-time positions countrywide
in 2006 was 1,390. This number represents a 7.9 percent vacancy rate in
baccalaureate and higher degree programs, which is an increase of 32
percent since 2002; and a 5.6 percent vacancy rate in associate degree
programs, which translates to a 10 percent rise in the same period. It
is not surprising that the problem of nurse faculty vacancies often is
described as acute and as exacerbating the national nurse-workforce
shortfall.
The present nurse faculty staffing deficit is expected to intensify
as the existing nurse educator workforce reaches retirement age. A 2006
NLN/Carnegie Foundation Preparation for the Professions Program
national survey of nurse educators found that fully one half of today's
nurse faculty say they expect to retire within the next 10 years, while
just over one in five (21 percent) expect to retire within the next 5
years. The NLN/Carnegie data also distinguished the nurse faculty
cohort from the rest of the academic workforce by age: Where 48 percent
of nurse educators are age 55 and over, only 35 percent of U.S.
academics and only 29 percent of health science faculty are over the
age of 54.
Salaries are a significant issue for recruitment and retention of
nurse educators. The NLN/Carnegie study found that nurse faculty earn
only 76 percent of the salary that faculty in other academic
disciplines earn. Colleges and universities also are reporting that the
nurse educator's compensation is not competitive with that of nurses in
clinical settings. The NLN notes that although few data are available
on salaries of nurses with doctorates, the U.S. Department of Health
and Human Services Preliminary Findings: 2004 National Sample Survey of
Registered Nurses (NSS-RN) data on salaries of master's-prepared nurses
can be used to compare the competiveness of nurse faculty salaries. The
NLN/Carnegie study reports ``nurse faculty salaries (annualized to a
12-month calendar) rank only eighth among the 11 positions evaluated by
the NSS-RN study. Not only are master's-prepared nurse faculty paid 33
percent less than nurse anesthetists, but they are also paid 17 percent
less than head nurses and nurse midwives, and approximately 12 percent
less than nurse practitioners and clinical nurse specialists with the
same educational credentials.''
Workload is another factor distinguishing nurse faculty from their
peers. According to the NLN/Carnegie research, 90 percent of the nurse
educators, responding to the survey, work full-time, many adding
administrative duties to teaching responsibilities, resulting in a 56-
hour average work week. In addition to their work inside their primary
academic institutions (PAI), more than 62 percent of nurse faculty
picked up work outside their PAI, averaging an additional day each week
(7-10 hours). With 45 percent of nurse faculty reporting
dissatisfaction with their current workload, ``over one in four nurse
educators who said they were likely to leave their current job cited
the desire for reduced workload as a motivating factor.''
Data also indicate that in large part the nurse faculty workforce
is not reflective of the Nation's population or of the nursing student
population. The NLN/Carnegie study affirmed that 96 percent of the
nurse faculty are female, contrasting with the three-fifths of the U.S.
postsecondary faculty who are males. The 2006 NLN/Carnegie study
reports that nursing also lags significantly behind the remainder of
academia with respect to diversity. Seven percent of nurse educators
are minorities while 16 percent of U.S. faculty belong to a racial
minority group.
The homogeneity of the nurse faculty plays out as a unique capacity
constraint, limiting nursing schools' ability to provide culturally
appropriate health care education toward developing a health care
system that understands and addresses the needs of the Nation's rapidly
diversifying population. Factors such as biases and stereotyping,
communication barriers, cultural sensitivity/competence, and system and
organizational determinants contribute to health care disparities,
generating a compelling need for workforce diversity.

THE FEDERAL FUNDING REALITY

Today's undersized supply of appropriately prepared nurses and
nursing faculty does not bode well for our Nation, where the shortages
are deepening health disparities, inflated costs, and poor quality
health care outcomes. Congress moved in the right policy direction in
passing the Nurse Reinvestment Act in 2002. That act helped develop
Title VIII programs into a more comprehensive system of capacity-
building strategies to develop nurses by providing schools of nursing
with grants to strengthen activities, such as faculty recruitment and
retention efforts, facility and equipment acquisition, clinical lab
enhancements, and loans, scholarships, and services that enable
students to overcome obstacles to completing their nursing education
programs. Yet, as the HRSA Title VIII data show, it is abundantly clear
that Congress must step up in providing critical attention and
significantly more funding to this ongoing systemic problem.
Nursing Education Loan Repayment Program.--In fiscal year 2007,
with 4,845 applicants to the Title VIII Nursing Education Loan
Repayment Program, 586 awards were made, or 12 percent of applicants
received awards. Whereas in fiscal year 2006, of the 4,222 applicants
to this program, 615 awards were made--translating to 14.6 percent of
applicants receiving awards.
Nursing Scholarship Program.--In fiscal year 2007, only 173
students were awarded scholarships due to the program's funding
capacity; versus a total of 218 awards in fiscal year 2006.
Advanced Education Nursing (AEN) Program.--This program supports
the graduate education that is the foundation to professional
development of advanced practice nurses, whether with clinical
specialties or with a specialty in teaching. In fiscal year 2007, AEN
supported 16,092 graduate nursing students across the various
specialties. The President's proposed fiscal year 2009 budget
eliminates this program, which is fundamental to appropriately
preparing future nursing faculty, the engine of the workforce pipeline.
AEN must be restored and fully funded in order to prevent the Nation
from losing ground in the effort to remedy the nurse and nurse faculty
shortages.
As the only organization that collects data across all levels of
the nursing education infrastructure, the NLN can state with authority
that the nursing shortage in this country will not be reversed until
the concurrent shortage of qualified nurse educators is addressed.
Without adequate faculty, there are simply too few spots in nursing
education programs to train all the qualified applicants out there.
This challenge requires millions of dollars of increased funding for
the professional development of nurses. The NLN urges Congress to
strengthen existing Title VIII nurse education programs by funding them
at a minimum level of $200 million for fiscal year 2009; and to restore
the Advanced Education Nursing program (Sec. 811) and fund it at an
increased level equivalent to the other Title VIII Nursing Workforce
Development Programs' proposed increase for fiscal year 2009.
Your support will help ensure that nurses exist in the future who
are prepared and qualified to take care of you, your family, and all
those in this country who will need our care.
______

Prepared Statement of the National Primate Research Centers

The Directors of the eight National Primate Research Centers
(NPRCs) respectfully submit this written testimony for the record to
the Senate Appropriations Subcommittee on Labor, Health and Human
Services, Education and Related Agencies. The NPRCs appreciate the
commitment that the Members of this Subcommittee have made to
biomedical research through strong support for the National Institutes
of Health (NIH).
The NPRCs are a national network of eight primate research centers
supported by the NIH National Center for Research Resources (NCRR). The
centers comprise the National Primate Research Program (NPRP), which
was created by Congress in 1960. The program seeks to address human
health problems through scientific research using the animal models
that most closely resemble humans in their genetics, physiology, and
disease processes--nonhuman primates. NPRC investigators and resources
support research projects sponsored by nearly every institute at NIH.
For example, NPRCs conduct research to help understand and treat
conditions such as heart disease, hypertension, cancer, diabetes,
hepatitis, AIDS, kidney disease, Alzheimer's disease, and Parkinson's
disease. We also conduct research on emerging infectious diseases and
support many aspects of biodefense. Each NPRC makes its facilities and
resources available to over 2,000 external NIH-funded investigators
from around the country. Our centers create collaborative research
environments that allow scientists to combine their individual
expertise beyond the scope of established disciplinary research
projects.
NPRCs are integral partners in new science partnerships that will
transform America's health and healthcare in the 21st century. NIH has
responded to the rapidly changing world by strategically framing the
next generation of biomedical research through cross-cutting,
interdisciplinary initiatives such as those supported in the NIH
Roadmap, the NIH Neuroscience Blueprint, the Clinical and Translational
Science Award program and the Genes, Environment and Health Initiative.
NPRCs are poised to continue research and resource partnerships that
will nurture the collaborative environment necessary to successfully
and efficiently conduct research within these evolving NIH frameworks.
In 2007, NPRCs endorsed the fiscal year 2008 Ad Hoc Group for
Medical Research proposal to increase the NIH budget by 6.7 percent
over each of the next three fiscal years, fiscal year 2008-fiscal year
2010. At the time, we recognized that competing budget priorities put
pressure on Congress to face difficult funding trade-offs yet we asked
the Subcommittee to adopt long-term commitment to NIH. As you are
aware, the final fiscal year 2008 appropriation for NIH was a
disappointment to many. For the fifth straight year, NIH funding failed
to match even the pace of biomedical inflation.
Unfortunately, the President's fiscal year 2009 budget request for
NIH continues this flat funding trend for the agency for the sixth
straight year. If the President's fiscal year 2009 request is enacted,
the agency will have lost over 13.4 percent of its purchasing power
during this time period when taking into account the anticipated 3.5
percent biomedical inflation rate for this year. As such, the NPRCs
join with their colleagues in the biomedical community in calling for a
$1.9 billion (6.6 percent) increase in NIH's total discretionary budget
for fiscal year 2009.
As a result of years of expanded investment and advancement in NIH
biomedical research during the doubling years, the demand for NPRC
resources has increased. To accommodate the increased focus of NIH on
translational science and other research demands placed on NPRCs, NCRR
should increase NPRCs P51 base grant (the mechanism that funds each
NPRC) so that all appropriate areas of research can benefit from
primate resources without delay. The ability of NIH-funded researchers
to conduct future projects with primate models will depend on the
enhancement of three key areas: (1) the nationwide availability of
primates; (2) the quality and capacity of primate housing and breeding
facilities, as well as the availability of related state-of-the-art
diagnostic and clinical support equipment at NPRCs; and (3) the number
of personnel trained in primate care and management at NPRCs. It is
unacceptable that NPRCs budgets were held relatively flat by NCRR while
the NIH budget doubled.
To illustrate the value of NPRC resources and expertise, below are
examples of cutting edge research activities conducted with nonhuman
primates:
Heart Disease and Stroke.--To date, advances against heart disease
have cut deaths due to heart attack and stroke by more than 50 percent
and save our economy more than half a trillion dollars annually in
healthcare expenses and worker productivity. Nonhuman primates are used
to investigate how genes interact with dietary factors to influence an
individual's risk of developing atherosclerosis or hypertension. It is
not possible to conduct this research with human subjects because it
requires long-term feeding of defined diets, specialized pedigrees and
the ability to frequently monitor multiple aspects of physiology.
Establishment of the pedigreed baboon as a model in which to study risk
factors for atherosclerosis has led to improvements in methods used to
search the genome for genes regulating these risk factors. Increased
funding for NIH and support for NPRCs will allow investigators to build
on this research and apply significant findings to human health.
Alzheimer's Disease.--A new report from the Alzheimer's Association
shows that there are more than 5 million people in the United States
living with Alzheimer's disease today--10 percent more than a previous
estimate 5 years ago. Medicare expenditures for beneficiaries with
Alzheimer's and other dementias is projected to increase to $160
billion by 2010 and $189 billion by 2015. NPRCs are using rhesus
monkeys to establish better models for studying the basic mechanisms of
Alzheimer's disease, and for testing new diagnostic and therapeutic
methods. Two distinct and cutting edge approaches are being developed
to express in rhesus monkeys the human mutant genes that cause
Alzheimer's disease. Further NIH-funded investigation and NPRCs support
could lead us to early interventions for Alzheimer's that would
decrease the healthcare cost burden and safeguard the health of
millions of Americans.
Mental Health Disorders.--The National Institute of Mental Health
points out that the annual economic cost of mental illness in the
United States is estimated at well over $150 million, including direct
and indirect costs. Further, according to statistics from the Centers
for Medicare and Medicaid Services, the direct costs of mental health
care represent 6.2 percent of overall healthcare costs which totaled
14.5 percent of the gross domestic product in 2001. Just one example of
NPRCs contribution to this category of diseases and disorders is a
project in which research conducted with non-human primates produced a
strong link between significant stress early in life and the increased
incidence of mental health problems during adolescence. The research
strengthens the case for proactive treatment or counseling of children
who undergo a significant early-life stress. Non-human primates provide
unique insight into a variety of mental health disorders in ways that
cannot be achieved in controlled studies in humans. Increased NIH
funding and NPRCs support will allow researchers across the Nation and
at NPRCs to continue work toward developing reliable diagnostic tools
and therapies so that the quality of life will be enhanced for the
millions of Americans burdened by mental health disorders.
Cancer.--According to NIH data, the 5-year survival rates 30 years
ago for the five most common cancers were: breast, 75 percent; prostate
68 percent; colon, 50 percent; rectum, 49 percent; and lung, 13
percent. However, due in large part to NIH-funded research advances,
data as of 2001 (the latest year for which NIH has statistics) shows
the 5-year survival rates for the most common cancers have increased
to: prostate, 100 percent; breast, 90 percent; colon, 65 percent;
rectum, 65 percent; and lung, 16 percent. It is known that
approximately 20 percent of cancers have a viral etiology. As such, a
project taken on by NPRCs uses non-human primate models of viral-
induced cancer to help scientists to understand fundamental mechanisms
through which normal cells are transformed into cancerous cells.
Increased and steady NIH funding and NPRC support will allow
researchers to build on past progress in treating, curing and reducing
the burden of cancer--this will lead to both a decline in the projected
rise of U.S. healthcare expenditures and result in an American
workforce with more healthy, productive years.
As mentioned previously, NPRCs research projects span the disease
foci at NIH institutes and centers, and also play important roles in
the various NIH initiatives, such as the NIH Roadmap, the NCRR
Strategic Plan, and the Clinical and Translational Science Award
program, among others. In the 1950's, primate research produced the
first vaccine for one of the world's worst childhood killers, the Polio
virus, reducing the number of cases in the United States from 58,000 to
one or two per year. More recently, primate research enabled the
development of a safe and effective vaccine for hepatitis B. Every
school child in the country is now vaccinated against hepatitis B.
Primates have also served as the best model for various types of HIV
research, and their availability for use has resulted in at least 14
licensed anti-viral drugs for treatment of HIV infection. Primate
models will continue to be necessary to defend the world against
possible future epidemics such as SARS, West Nile Virus, and avian flu.
In addition to deadly viral epidemics, primate research has enabled the
discovery of better treatments and therapies for diseases and
occurrences such as stroke, cataracts, depression and other psychiatric
illnesses.
Not only do primates have the potential to provide answers for
long-standing research questions, primate research provides an
unparalleled opportunity to address more recently defined research
priorities, such as those relating to genomics. The specific
availability of information in the primate genome, which is quite
similar to the human genome, makes primates essential in studies that
require an integrated understanding of a whole biological system.
Recent reports suggest that extensive analysis of genome structure and
function in nonhuman primates could make immediate and significant
contributions to the overall mission of NIH by accelerating progress in
understanding many human diseases. Also, primates serve as critical
animal models in biodefense research projects for which, in some cases,
it would be inappropriate to conduct early clinical trials in humans.
Primates are recognized as vital research resources within Federal
strategic plans regarding biodefense research, including: the National
Institute of Allergy and Infectious Diseases (NIAID) Strategic Plan for
Biodefense Research; the NIAID Research Agenda for Category A Agents;
and the NIAID Research Agenda for Category B and C Priority Pathogens.
Also, NPRCs are partners in NIAID-funded Regional Centers of Excellence
for Biodefense and Emerging Infectious Diseases as well as with NIAID-
funded National and Regional Biocontainment Laboratories.
As NIH and the national biomedical research agenda evolve, NPRCs
adjust to meet the resource needs of the research community and also to
maintain research programs that are on the cutting-edge of science. The
reservoirs of knowledge residing within the NPRCs create new
opportunities for research partnerships with investigators at host
academic institutions and in the biomedical research community at
large. Never have the research questions been so profound, or the
implications for human health so critical. NPRCs are poised to bridge
the gap between knowledge already gleaned from simple cellular and
animal models and knowledge that is needed to promote human health, and
to translate that knowledge into vaccines, therapeutic drugs, and other
strategies to prevent or treat human diseases.
Thank you for the opportunity to submit this written testimony
concerning funding for NIH in the fiscal year 2009 appropriations bill
and for your attention to the critical need for primate research and
enhancement of the NPRCs P51 base grant. Please do not hesitate to
contact any one of the eight NPRC Directors should you have any
questions.
______

Prepared Statement of the National Psoriasis Foundation

INTRODUCTION AND OVERVIEW

The National Psoriasis Foundation (the Foundation) appreciates the
opportunity to submit written testimony for the record regarding
Federal funding for psoriasis and psoriatic arthritis research for
fiscal year 2009. The Foundation serves as the Nation's largest
patient-driven non-profit voluntary association committed to improving
the quality of life for the millions of people affected by psoriasis
and psoriatic arthritis.
As part of our mission, we educate health professionals, the public
and policymakers to increase public awareness and understanding of the
challenges faced by people with psoriasis and psoriatic arthritis.
Moreover, the Foundation maintains a strong commitment to securing
public policies and programs that support its focus of education,
advocacy and research toward better treatments and a cure. The
Foundation specifically seeks to advance public and private efforts to
improve treatment of these diseases, identify a cure and ensure that
all people with psoriasis and psoriatic arthritis have access to the
medical care and treatment options they need to live the highest
quality of life possible.
The Foundation stands ready to work with policymakers at the local,
State, and Federal levels to advance policies and programs that will
reduce and prevent suffering from psoriasis and psoriatic arthritis.
Specifically, the Foundation advocates that the National Institutes of
Health (NIH) be given additional resources to support new investigator-
initiated research grants for genetic, clinical, and basic research
related to the understanding of the cellular and molecular mechanisms
of psoriasis and psoriatic arthritis, as well as studies to understand
co-morbidities such as obesity, depression, and heart disease that may
be associated with inflammation in the skin and joints. Specifically,
we respectfully call upon Congress to boost psoriasis and psoriatic
arthritis research efforts by allocating a 6.6 percent increase in
fiscal year 2009 (to $31.1 billion) to NIH and its institutes and
centers that play an integral role in psoriasis and psoriatic arthritis
research:
--The National Institute of Arthritis and Musculoskeletal and Skin
Diseases (NIAMS);
--The National Institute of Allergy and Infectious Diseases (NIAID);
--The National Human Genome Research Institute (NHGRI);
--The National Institute for Environmental Health Systems (NIEHS);
--The National Institute of Mental Health (NIMH);
--The National Center for Complementary and Alternative Medicine
(NCCAM); and
--The National Center for Research Resources (NCRR).
In addition, the Foundation urges the Subcommittee to encourage the
Centers for Disease Control and Prevention (CDC) to strengthen patient
data collection on psoriasis to improve the knowledge base of the
longitudinal impact of these diseases on the individuals they affect.
The Foundation believes that a greater investment in NIH, NIAMS, NIAID,
NHGRI, NIEHS, NIMH, NCCAM, NCRR, and CDC will lead to the development
of new, safe, effective and long-lasting treatments and a cure for
psoriasis and psoriatic arthritis.

THE IMPACT OF PSORIASIS AND PSORIATIC ARTHRITIS

According to the NIH, as many as 7.5 million Americans have
psoriasis--an immune-mediated genetic, chronic, inflammatory, painful,
disfiguring, and life-altering disease that requires life-long
sophisticated medical intervention and care, and imposes serious
adverse effects on the individuals and families affected. On average,
17,000 people with psoriasis live in each Congressional District.
Psoriasis most often first strikes between the ages of 15 and 25
and lasts a lifetime. Unfortunately, psoriasis often is overlooked or
dismissed because it typically does not cause death. It is commonly and
incorrectly considered by insurers, employers, policymakers, and the
public as a mere annoyance--a superficial problem, mistakenly thought
to be contagious and/or due to poor hygiene. Yet, together psoriasis
and psoriatic arthritis impose significant economic costs on
individuals and society. Each year, Americans with psoriasis lose
approximately 56 million hours of work and spend $2 billion to $3
billion to treat the disease.
There is mounting evidence that people with psoriasis are at
elevated risk for myriad other serious, chronic and life-threatening
conditions. Although data are still emerging on the relationship of
psoriasis to other diseases and their ensuing costs to the medical
system, it is clear that psoriasis goes hand-in-hand with co-
morbidities such as Crohn's disease, diabetes, metabolic syndrome,
obesity, hypertension, heart attack, cardiovascular disease, liver
disease and psoriatic arthritis--which occurs in up to 30 percent of
people with psoriasis. Of serious concern is that studies have shown
that psoriasis causes as much disability as other major chronic
diseases and individuals with psoriasis are twice as likely to have
thoughts of suicide as people without psoriasis or with other chronic
conditions.
Despite some recent breakthroughs, many people with psoriasis and
psoriatic arthritis remain in need of improved quality of life and
effective, safe, and affordable therapies, which could be delivered
through an increased Federal commitment to genetic, clinical and basic
research. Research holds the key to improved treatment of these
diseases, better diagnosis of psoriatic arthritis and eventually a cure
for both conditions.

FEDERAL PSORIASIS AND PSORIATIC ARTHRITIS RESEARCH

While our Nation has benefited from past Federal investment in the
NIH, unfortunately psoriasis and psoriatic arthritis research progress
has not keep pace with other chronic conditions. An analysis of
longitudinal Federal funding data shows that, on average over the past
decade, NIAMS has spent less than $1 per person with psoriasis per
year. At the historical and current rate of psoriasis funding, NIH
funding is not keeping pace with research needs.
Meetings and correspondence with NIAMS and other Institutes and
Centers at NIH indicates that the three principal agencies involved in
psoriasis and psoriatic arthritis research are NIAMS, NCRR and NHGRI,
the Foundation knows from meetings at NIH that other Federal research
agencies--such as NIAID, NIEHS, NIMH, and NCCAM--have important roles
to play in psoriasis and psoriatic arthritis and understanding their
health and psychosocial impact on affected individuals. The Foundation
has joined with the broader health community in advocating $31.1
billion for the NIH in fiscal year 2009. This level of investment will
allow NIH to sustain and build on its research progress resulting from
the recent NIH budget doubling effort while avoiding the severe
disruption to that progress that would result from a minimal increase.
More than ever, a greater investment today in psoriasis and psoriatic
arthritis will go farther faster and help the Nation turn the corner on
finding a cure for these two life-altering, disfiguring diseases.
We hope that the subcommittee will provide all seven of the
aforementioned institutes and centers with increased fiscal year 2009
funding specifically, we urge the subcommittee to provide NIH and the
aforementioned institutes and centers with a 6.6 percent increase in
fiscal year 2009 funding and encourage them to undertake and/or expand
psoriasis and psoriatic arthritis research so they can undertake the
following:
--Make efforts to understand the reasons for the co-morbidities
associated with psoriasis and psoriatic arthritis such as
obesity, depression, heart disease and heart attack and the
interplay between inflammation and such co-morbidities found
disproportionately among individuals with psoriasis.
Individuals with psoriasis are at elevated risk for other
chronic and debilitating health conditions, such as heart
attacks and diabetes and the risk of mortality is 50 percent
higher for people with severe psoriasis.
--Conduct research within the Institutes and Centers associated with
these co-morbidities with particular focus on biomarkers for
psoriasis and psoriatic arthritis and shared molecular pathways
with comorbid conditions.
--Support NIAMS in its interest in a strong follow-up study to the
Genetic Association Information Network grant. Research is
beginning to identify the immune cells involved in psoriasis;
this knowledge will help scientists understand which cells or
molecular processes should be targeted for more effective
treatments and eventually a cure.
--Undertake research relating to genetics, immunology, and animal
models relating to psoriasis and psoriatic arthritis.
--Expand basic research including how genetic variation gives rise to
differences in treatment responses and mechanisms that link
skin and joint inflammation.
--Study the immune cells and inflammatory process as it relates to
the pathogenesis of psoriasis.
--Conduct research to better the understanding between psoriasis and
mental health, including identifying any underlying biologic
reason for mental health issues associated with psoriasis, as
well how negative social and psychological effects impact
psoriasis. It is estimated as many as 52 percent of psoriasis
patients report clinically significant psychiatric symptoms
(such as depression) and that individuals with psoriasis are
twice as likely to have thoughts of suicide as people without
psoriasis or with other chronic conditions.
--Study how environmental triggers interact with different genetic
susceptibility factors to better understand psoriasis disease
development and response to treatment to provide insight in
psoriasis and prevention of psoriasis and psoriatic arthritis.
--Evaluate of the effectiveness of complementary and alternative
therapies for the treatment of psoriasis and/or psoriatic
arthritis.

THE ROLE OF CDC IN PSORIASIS AND PSORIATIC ARTHRITIS RESEARCH

The Foundation is concerned that there have been very few efforts
to collect epidemiological and other related data on individuals with
psoriasis and psoriatic arthritis. Researchers and clinicians continue
to be limited in their longitudinal understanding of these conditions
and their effects on individual patients. The Foundation hopes that the
Subcommittee will encourage the CDC to add psoriasis and psoriatic
arthritis specific epidemiological studies where appropriate as part of
its research plan. In addition, we ask that the Subcommittee encourage
the National Center for Chronic Disease Prevention and Health Promotion
(NCCDPHP) within the CDC to examine and develop options and
recommendations for the creation of a National Psoriasis and Psoriatic
Arthritis Patient Registry in fiscal year 2009. A national patient
registry that collects longitudinal patient data will help researchers
to learn about key attributes such as response to treatment,
substantiating the waxing and waning of psoriasis, understanding
associated manifestations like nail disease and arthritis, and the
relationship of psoriasis to other public health concerns.

CONCLUSION

On behalf of the Foundation's Board of Trustees and the millions of
individuals with psoriasis and psoriatic arthritis who we represent,
thank you for this opportunity to submit written testimony regarding
the fiscal year 2009 funding levels necessary to ensure that our Nation
adequately addresses psoriasis and psoriatic arthritis and to make
gains in improving therapies and eventually attaining a cure. We thank
you in advance for encouraging the CDC and the NCCDPHP to become more
engaged in psoriasis and psoriatic arthritis data collection. We
believe that additional research undertaken at the NIH coupled with
epidemiologic efforts at the CDC together will help advance the
Nation's efforts to improve treatments and identify a cure for
psoriasis and psoriatic arthritis. Please feel free to contact us at
any time; we are happy to be a resource to Subcommittee members and
your staff. We very much appreciate the Subcommittee's attention to our
requests.
______

Prepared Statement of the National Respite Coalition

Mr. Chairman, I am Jill Kagan, Chair of the ARCH National Respite
Coalition, a network of respite providers, family caregivers, State and
local agencies and organizations across the country who support
respite. Twenty-five State respite coalitions, including two of the
most active, the Iowa Respite and Crisis Care Coalition and the
Pennsylvania Respite Coalition, are also affiliated with the NRC. This
statement is presented on behalf of the these organizations, as well as
the members of the Lifespan Respite Task Force, a coalition of over 80
national and more than 100 State and local groups who support funding
for the Lifespan Respite Care Act (Public Law 109-442). We are
requesting that the Subcommittee include funding for the newly enacted
Lifespan Respite Care Act in the fiscal year 2009 Labor, HHS and
Education Appropriations bill at its modest authorized level of $53.3
million for fiscal year 2009. Many Members of Congress already support
funding for Lifespan Respite. In fact, the Senate Budget Resolution
reserves $53 million in the Department of Health and Human Services
Account for Lifespan Respite.
Who Needs Respite?--A national survey found that 44 million family
caregivers are providing care to individuals over age 18 with
disabilities or chronic conditions (National Alliance for Caregiving
(NAC) and AARP, 2004). In 2006, the last year Federal data were
collected, 13.9 percent of U.S. children (approximately 10 million) had
special health care needs and 21 percent of households with children
included at least one child with a special health care need. These
rates represent a modest increase since the last survey conducted in
2001. (National Survey of Children with Special Health Care Needs, U.S.
Health Resources and Services Administration, 2008). These surveys
suggest that a conservative estimate of the Nation's family caregivers
probably exceeds 50 million.
Compound this picture with the growing number of caregivers known
as the ``sandwich generation'' caring for young children as well as an
aging family member. An estimated 20 to 40 percent of caregivers have
children under the age of 18 to care for in addition to a parent or
other relative with a disability. And in the US, 6.7 million children,
with and without disabilities, are in the primary custody of an aging
grandparent or other relative other than their parents.
Together, these family caregivers are providing about 80 percent of
all long-term care in the United States. It has been estimated that
these family caregivers provide $350 billion in uncompensated care, an
amount comparable to Medicare spending ($342 billion in 2005) and more
than total spending for Medicaid, including both Federal and State
contributions and both medical and long-term care ($300 billion in
2005). (AARP, 2007).
What is Respite Need?--State and local surveys have shown respite
to be the most frequently requested service of the Nation's family
caregivers, including a recent study by Evercare (Evercare and NAC,
2006). Yet respite is unused, in short supply, inaccessible, or
unaffordable to a majority of the Nation's family caregivers. The 2004
NAC/AARP survey of caregivers found that despite the fact that the most
frequently reported unmet needs were ``finding time for myself,'' (35
percent), ``managing emotional and physical stress'' (29 percent), and
``balancing work and family responsibilities'' (29 percent), only 5
percent of family caregivers were receiving respite (NAC and AARP,
2004). In rural areas, the percentage of family caregivers able to make
use of respite was only 4 percent (Easter Seals and NAC, 2006)
Barriers to accessing respite include reluctance to ask for help,
fragmented and narrowly targeted services, cost, and the lack of
information about how to find or choose a provider. Even when respite
is an allowable funded service, a critically short supply of well
trained respite providers may prohibit a family from making use of a
service they so desperately need.
Twenty of 35 State-sponsored respite programs surveyed in 1991
reported that they were unable to meet the demand for respite services.
In the last 15 years, we suspect that not too much has changed. A study
conducted by the Family Caregiver Alliance identified 150 family
caregiver support programs in all 50 states and Washington, DC funded
with state-only or State/Federal dollars. Most of the funding comes
through the Federal National Family Caregiver Support Program. As a
result, programs are administered by local area agencies on aging and
primarily serve the elderly. And again, some programs provide only
limited respite, if at all. Only about one-third of these 150
identified programs serve caregivers who provide care to adults age 18-
60 who must meet stringent eligibility criteria. As the report
concluded, ``State program administrators see the lack of resources to
meet caregiver needs in general and limited respite care options as the
top unmet needs of family caregivers in the States.'' The 25 State
respite coalitions and other National Respite Network members confirm
that long waiting lists or turning away of clients because of lack of
resources is still the norm.
While most families take great joy in helping their family members
to live at home, it has been well documented that family caregivers
experience physical and emotional problems directly related to their
caregiving responsibilities. Three-fifths of family caregivers age 19-
64 surveyed recently by the Commonwealth Fund reported fair or poor
health, one or more chronic conditions, or a disability, compared with
only one-third of non-caregivers (Ho, Collins, Davis and Doty, 2005). A
study of elderly spousal caregivers (aged 66-96) found that caregivers
who experience caregiving-related stress have a 63 percent higher
mortality rate than noncaregivers of the same age (Schulz and Beach,
December 1999).
Supports that would ease their burden, most importantly respite
care, are too often out of reach or completely unavailable. Even the
simple things we take for granted, like getting enough rest or going
shopping, become rare and precious events. One Massachusetts mother of
a seriously ill child spoke to the demands of constant caregiving: ``I
recall begging for some type of in-home support . . . I fell asleep
twice while driving on the Massachusetts Turnpike on the way to
appointments at Children's Hospital. The lack of respite . . . put our
lives and the lives of everyone driving near me at risk.''
Restrictive eligibility criteria also preclude many families from
receiving services or continuing to receive services they once were
eligible for. A mother of a 12-year-old with autism was denied
additional respite by her State Developmental Disability agency because
she was not a single mother, was not at poverty level, wasn't
exhibiting any emotional or physical conditions herself, and had only
one child with a disability. She said, ``Do I have to endure a failed
marriage or serious health consequences for myself or my family before
I can qualify for respite? Respite is supposed to be a preventive
service.''
For the millions of families of children with disabilities, respite
has been an actual lifesaver. However, for many of these families,
their children will age out of the system when they turn 21 and they
will lose many of the services, such as respite, that they currently
receive. In fact, 46 percent of U.S. State units on aging identified
respite as the greatest unmet need of older families caring for adults
with lifelong disabilities. An Alabama mom of a 19-year-old-daughter
with multiple disabilities who requires constant care recently told us
about her fears at a respite summit in Alabama, ``My daughter Casey has
cerebral palsy, she does not communicate, she is incontinent she eats a
pureed diet, she utilizes a wheelchair, she is unable to bathe or dress
herself. At 5 feet 5 inches and 87 pounds I carry her from her bedroom
to the bathroom to bathe her, and back again to dress her. . . .
Without respite services, I do not think I could continue to provide
the necessary long-term care that is required for my daughter. . . . As
I age, I do wonder how much longer I will be able to maintain my daily
ritual as my daughter's primary caregiver.'' Even with recent changes
to the National Family Caregiver Support Program, this mom would not
qualify for respite.
Disparate and inadequate funding streams exist for respite in many
States. But even under the Medicaid program, respite is allowable only
through State waivers for home and community-based care. Under these
waivers, respite services are capped and limited to narrow eligibility
categories. Long waiting lists are the norm.
Respite may not exist at all in some States for individuals under
age 60 with conditions such as ALS, MS, spinal cord or traumatic brain
injuries, or children with serious emotional conditions. In Tennessee,
a young woman in her twenties gave up school, career and a relationship
to move in and take care of her 53 year-old mom with MS when her dad
left because of the strain of caregiving. She went for years providing
constant care to her mom with almost no support. Now 31, she wrote, ``I
was young--I still am--and I have the energy, but--it starts to weigh.
Because we've been able to have respite care, we've developed a small
pool of people and friends that will also come and stand in. And it has
made all the difference.''
Respite Benefits Families and is Cost Saving.--Respite has been
shown to be effective in improving the health and well-being of family
caregivers that in turn helps avoid or delay out-of-home placements,
such as nursing homes or foster care, minimizes the precursors that can
lead to abuse and neglect, and strengthens marriages and family
stability. A recent report from the U.S. Dept. of Health and Human
Services prepared by the Urban Institute found that higher caregiver
stress among those caring for the aging increases the likelihood of
nursing home entry. Reducing key stresses on caregivers, such as
physical strain and financial hardship, through services such as
respite would reduce nursing home entry (Spillman and Long, USDHHS,
2007)
The budgetary benefits that accrue because of respite are just as
compelling, especially in the policy arena. Delaying a nursing home
placement for just one individual with Alzheimer's or other chronic
condition for several months can save government long-term care
programs thousands of dollars. In an Iowa survey of parents of children
with disabilities, a significant relationship was demonstrated between
the severity of a child's disability and their parents missing more
work hours than other employees. They also found that the lack of
available respite care appeared to interfere with parents accepting job
opportunities. (Abelson, A.G., 1999)
Moreover, data from an ongoing research project of the Oklahoma
State University on the effects of respite care found that the number
of hospitalizations, as well as the number of medical care claims
decreased as the number of respite care days increased (Fiscal year
1998 Oklahoma Maternal and Child Health Block Grant Annual Report, July
1999). A Massachusetts social services program designed to provide
cost-effective family-centered respite care for children with complex
medical needs found that for families participating for more than 1
year, the number of hospitalizations decreased by 75 percent, physician
visits decreased by 64 percent, and antibiotics use decreased by 71
percent (Mausner, S., 1995).
In the private sector, the most recent study by Metropolitan Life
Insurance Company and the National Alliance for Caregivers found that
U.S. businesses lose from $17.1 billion to $33.6 billion per year in
lost productivity of family caregivers. Offering respite to working
family caregivers could help improve job performance and employers
could potentially save billions (MetLife and National Alliance for
Caregiving, 2006).
Lifespan Respite Care Program Will Help.--The Lifespan Respite Care
Act is based on the success of statewide Lifespan Respite programs in
four States: Oregon, Nebraska, Wisconsin and Oklahoma. A new Arizona
State Lifespan Respite program is now up and running. Michigan passed
State Lifespan Respite legislation in 2004 but has not had funding, and
new State Lifespan Respite legislation is currently pending in Kansas
in preparation for the Federal funds.
Lifespan Respite, which is a coordinated system of community-based
respite services, helps States use limited resources across age and
disability groups more effectively, instead of each State agency or
community-based organization being forced to constantly reinvent the
wheel or beg for small pots of money. Pools of providers can be
recruited, trained and shared, administrative burdens can be reduced by
coordinating resources, and the savings used to fund new respite
services for families who may not qualify for any existing Federal or
State program.
The State Lifespan Respite programs provide best practices on which
to build a national respite policy. The programs have been recognized
by prominent policy organizations, including the National Conference of
State Legislatures, which recommended the Nebraska program as a model
for State solutions to community-based long-term care. The National
Governors Association and the President's Committee for People with
Intellectual Disabilities also have highlighted lifespan respite
systems as viable solutions. And most recently, the White House
Conference on Aging recommended enactment of the Lifespan Respite Care
Act to Congress.
The purpose of the new law is to expand and enhance respite
services, improve coordination, and improve respite access and quality.
Under a competitive grant program, States are required to establish
State and local coordinated Lifespan Respite care systems to serve
families regardless of age or special need, provide new planned and
emergency respite services, train and recruit respite workers and
volunteers and assist caregivers in gaining access. Those eligible
would include family members, foster parents or other adults providing
unpaid care to adults who require care to meet basic needs or prevent
injury and to children who require care beyond that required by
children generally to meet basic needs.
The Federal Lifespan Respite program would be administered by the
U.S. Department of Health and Human Services (HHS), which would provide
competitive grants to State agencies through Aging and Disability
Resource Centers working in collaboration with State respite coalitions
or other State respite organizations. The program is authorized at
$53.3 million in fiscal year 2009 rising to $95 million in fiscal year
2011. The program has received no Congressional funding to date.
No other Federal program mandates respite as its sole focus. No
other Federal program would help ensure respite quality or choice, and
no current Federal program allows funds for respite start-up, training
or coordination or to address basic accessibility and affordability
issues for families. We urge you to include $53.3 million in the fiscal
year 2009 Labor, HHS, Education appropriations bill so that Lifespan
Respite Programs can be replicated in the States and more families,
with access to respite, will be able to continue to play the
significant role in long-term care that they are fulfilling today.
______

Prepared Statement of the National Sleep Foundation

Mr. Chairman and members of the subcommittee, thank you for
allowing me to submit testimony on behalf of the National Sleep
Foundation (NSF). I am Dr. Meir Kryger, Chairman of the NSF Board of
Directors and Director of Sleep Medicine Research and Education,
Gaylord Hospital, Wallingford, Connecticut. NSF is an independent, non-
profit organization that is dedicated to improving public health and
safety by achieving understanding of sleep and sleep disorders, and by
supporting sleep-related education, research, and advocacy. We work
with sleep medicine and other health care professionals, researchers,
patients and drowsy driving victims throughout the country as well as
collaborate with many government, public and private organizations with
the goal of preventing health and safety problems related to sleep
deprivation and untreated sleep disorders.
Sleep problems, whether in the form of medical disorders or related
to work schedules and a 24/7 lifestyle, are ubiquitous in our society.
It is estimated that sleep-related problems affect 50 to 70 million
Americans of all ages and socioeconomic classes. Sleep disorders are
common in both men and women; however, important disparities in
prevalence and severity of certain sleep disorders have been identified
in minorities and underserved populations. Despite the high prevalence
of sleep disorders, the overwhelming majority of sufferers remain
undiagnosed and untreated, creating unnecessary public health and
safety problems, as well as increased health care expenses. Surveys
conducted by NSF show that more than 60 percent of adults have never
been asked about the quality of their sleep by a physician, and fewer
than 20 percent have ever initiated such a discussion.
Additionally, Americans are chronically sleep deprived as a result
of demanding lifestyles and a lack of education about the impact of
sleep loss. Sleepiness affects vigilance, reaction times, learning
abilities, alertness, mood, hand-eye coordination, and the accuracy of
short-term memory. Sleepiness, as a result of untreated disorders or
sleep deprivation, has been identified as the cause of a growing number
of on-the-job accidents and automobile crashes.
According to the National Highway Traffic Safety Administration's
2002 National Survey of Distracted and Drowsy Driving Attitudes and
Behaviors, an estimated 1.35 million drivers have been involved in a
drowsy driving crash in the past 5 years. According to NSF's 2008 Sleep
in America poll, 64 percent of respondents report that they have driven
drowsy at least once in the past year. In fact, 32 percent say they
drive drowsy once a month or more! A large number of academic studies
have linked work accidents, absenteeism, and poor school performance to
sleep deprivation and circadian effects.
The 2006 Institute of Medicine (IOM) report, Sleep Disorders and
Sleep Deprivation: An Unmet Public Health Problem, found the cumulative
effects of sleep loss and sleep disorders represent an under-recognized
public health problem and have been associated with a wide range of
negative health consequences, including hypertension, diabetes,
depression, heart attack, stroke, and at-risk behaviors such as alcohol
and drug abuse--all of which represent long-term targets of the
Department of Health and Human Services (HHS) and other public health
agencies. Moreover, the personal and national economic impact is
staggering. The IOM estimates that the direct and indirect costs
associated with sleep disorders and sleep deprivation total hundreds of
billions of dollars annually.
Sleep science and government reports have clearly demonstrated the
importance of sleep to health, safety, productivity and well-being, yet
studies continue to show that millions of Americans are at risk for
serious health and safety consequences of untreated sleep disorders and
inadequate sleep. Unfortunately, despite recommendations in numerous
Federal reports, there are no on-going national educational programs
regarding sleep and fatigue issues aimed at the general public, health
care professional, underserved communities or at-risk groups.
NSF believes that every American needs to understand that good
health includes healthy sleep, just as it includes regular exercise and
balanced nutrition. We must elevate sleep to the top of the national
health agenda. We need your help to make this happen.
Our biggest challenge is bridging the gap between the outstanding
scientific advances we have seen in recent years and the level of
knowledge about sleep held by health care practitioners, educators,
employers, and the general public. Because resources are limited and
the challenges great, we think creative and new partnerships are needed
to fully develop sleep awareness, education, and training initiatives.
Consequently, the NSF is spearheading two important initiatives to
raise public and physician awareness of the importance of sleep to the
health, safety and well-being of the Nation.
First, for the last 4 years, Congress has recommended that the CDC
support activities related to sleep and sleep disorders. As a result,
CDC's National Center for Chronic Disease Prevention and Health
Promotion has been collaborating with more than twenty voluntary
organizations and Federal agencies to form the National Sleep Awareness
Roundtable (NSART), which was officially launched in March of 2007.
NSART is currently working to develop a National Action Plan. This
document will address what is required to organize a successful
collaboration to implement effective public and professional awareness
and education initiatives to improve sleep literacy and healthy sleep
behaviors. NSART is seeking to expand its membership by reaching out to
new organizations and State and Federal agencies that are interested in
raising awareness of sleep issues and implementing NSART's National
Action Plan.
In fiscal year 2008, Congress provided $818,000 for activities
related to sleep and sleep disorders, including CDC's participation in
NSART and incorporating questions on sleep and sleep-related
disturbances into established CDC surveillance systems. The President's
fiscal year 2009 budget request currently includes $818,000 for these
programs.
With fiscal year 2008 funding, CDC plans to provide grants to at
least 15 States to include several sleep questions in their data
collection through the Behavioral Risk Factor Surveillance System. CDC
also plans to include one core sleep question in its national data
collection efforts. This new data will provide important information on
the prevalence of sleep disorders and enable researchers to better
address the complex interrelationship between sleep loss and comorbid
conditions such as obesity, diabetes, depression, hypertension, and
drug and alcohol abuse.
CDC also plans to provide support for the goals and activities of
the National Sleep Awareness Roundtable.
Although the CDC has taken initial steps to begin to consider how
sleep affects public health issues, the agency needs additional
resources to take appropriate actions, as recommended by the IOM and
other governmental reports.
Expanded funding for sleep and sleep disorder-related activities
would allow the Center to create education and training materials for
current and future health professionals; build and test public health
interventions; expand surveillance and epidemiological activities;
create fellowships and research opportunities at State universities;
and enhance public awareness and education on sleep and sleep
disorders. The following are detailed scenarios for various funding
levels.
$2 million
--Expand Surveillance on BRFSS.--CDC could double the number of
grants it provides to States to use the optional sleep module
and include more core questions in the nationwide data
collection through the Behavioral Risk Factor Surveillance
System (BRFSS). CDC would also expand its participation in and
funding of the goals and activities of the National Sleep
Awareness Roundtable.
$5 million--All activities detailed in the $2 million scenario, plus
--Public Education.--CDC could support the development of public
education and awareness initiatives that use targeted
approaches for delivering sleep-related messages.
--Training Materials.--Tools could be developed for current and
future health professionals to increase the diagnosis and
treatment of sleep disorders. Today, most health care
professionals receive no such training, which increases the
Nation's health burden.
$11 million--All activities detailed in the $5 million scenario, plus
--Initiate Surveillance on YRBSS.--CDC could implement questions on
the Youth Risk Behavior Surveillance System (YRBSS). This will
further build the evidence base for the prevalence of sleep-
related conditions that commonly afflict the American
population, such as obstructive sleep apnea, in addition to
increasing data collection on sleep-related practices and
public awareness of their importance across the life stages.
--Fellowship and Research Opportunities.--Additional funding would
also allow the CDC to support the development of targeted
approaches for delivering sleep-related messages and increasing
public education and awareness on this important issue.
Fellowship opportunities could be increased to attract
promising researchers into the field of sleep epidemiology.
NSF and members of the National Sleep Awareness Roundtable believe
that a partnership with CDC is critical to address the public health
impact of sleep and sleep disorders. We ask that the Committee
encourage CDC to continue to take a leadership role in partnering with
other Federal agencies and voluntary health organizations in the
National Sleep Awareness Roundtable to create collaborative sleep
education and public awareness initiatives. We hope that the Committee
will provide funding of $11,000,000 to the CDC to execute programs as
outlined here and to financially support efforts developed by NSART
through a cooperative agreement similar to other roundtables in which
CDC participates.
Thank you again for the opportunity to present you with this
testimony.
______

Prepared Statement of the National Technical Institute for the Deaf

Mr. Chairman and members of the committee: I am pleased to present
the fiscal year 2009 appropriation request for the National Technical
Institute for the Deaf (NTID), one of eight colleges of RIT, in
Rochester NY. Created by Congress, we have fulfilled our mission with
distinction for 40 years. We currently provide university technical
education to a total of 1,343 students including 1,185 deaf and hard-
of-hearing students and 158 hearing students from almost every state.

BUDGET REQUEST

We respectfully request your support of our full appropriation
request, plus additional funds. Since the submission of our fiscal year
2009 budget request, a number of unanticipated--and unavoidable--
circumstances have affected NTID. The first table below details our
original request and the second details an additional $2,185,000 that
we request.
In total we ask for $64,212,000 ($62,027,000 requested plus
$2,185,000 in added funds).

NTID FISCAL YEAR 2009 ORIGINAL REQUEST AND PRESIDENT'S REQUEST
----------------------------------------------------------------------------------------------------------------
Operations Construction Total
----------------------------------------------------------------------------------------------------------------
NTID Request.................................................... $60,852,000 $1,175,000 $62,027,000
President's Request............................................. 58,020,000 1,175,000 59,195,000
-----------------------------------------------
Difference................................................ 2,832,000 .............. 2,832,000
----------------------------------------------------------------------------------------------------------------

NTID FISCAL YEAR 2009 ADDITIONAL UNANTICIPATED REQUESTED FUNDING (NOT
INCLUDED ABOVE)
------------------------------------------------------------------------
Amount
------------------------------------------------------------------------
Enrollment: We experienced significant growth in $350,000
enrollment, up 93 students to 1,343, the second largest
in our history. New applications are up another 8
percent. Scholarships costs will be $350,000 above last
year...................................................
Fair Labor Standards Act: RIT learned some non-exempt 1,000,000
staff were improperly classified as exempt.
Reclassification means about 140 NTID employees will
receive an added $650,000 overtime pay. Forty more are
under review, potentially adding $350,000 overtime
fiscal year 2009.......................................
Salary increases: Intense local competition for 835,000
interpreters from video relay services means increased
salaries are a must. A 10 percent increase is
approximately $550,000; more may be required to retain
interpreters. Also NTID budgeted a 3.0 percent faculty/
staff raise for fiscal year 2009; however, RIT
allocated 4.5 percent for faculty costing an extra
$285,000...............................................
---------------
Subtotal Additional Unanticipated Request......... 2,185,000
---------------
Total of Original and Unanticipated Requests...... \1\ 64,212,000
------------------------------------------------------------------------
\1\ Thus we ask that the $2,832,000 cut by the President be restored and
that an additional $2,185,000 be added to our operations, bringing our
total request to $64,212,000.

Adding to our concerns for fiscal year 2009--and as included
above--RIT learned it was not in compliance with some provisions of the
Fair Labor Standards Act. This finding affected about 140 NTID
employees, and others who worked for NTID in the last six years. Forty
additional NTID positions are now being evaluated for reclassification,
which we anticipate will result in added pay to these individuals for
overtime in fiscal year 2009 and beyond.
The reclassification has already added $800,000 to fiscal year 2008
overtime expenditures and is expected to grow to $1,000,000 in fiscal
year 2009 and beyond. We can not support this at our requested level
much less at the amount recommended in the President's budget.
Unanticipated salary pressures also impact fiscal year 2009. We
budgeted for a 3 percent salary increase; however, only two months ago
RIT increased faculty salaries by 4.5 percent, a $285,000 impact. We
also face a necessary increase in interpreter salaries for fiscal year
2009 to compete with video relay service centers in Rochester; they
have significantly increased local pay scales.
It is extremely unusual that NTID asks for funds above our original
request. However, the added circumstances we face--all of which have
developed since we submitted our fiscal year 2009 request, require us
to ask for these additional funds. Recall that quite the opposite, we
have consistently restrained requests. From fiscal year 2003 through
fiscal year 2007 we documented $6,200,000 of savings by reducing/
reallocating headcounts and increasing revenues. These difficult
savings controlled requests while improving programs and expanding in
areas like speech-to-text services for deaf and hard-of-hearing
students who benefit from this service.
We are proud of those accomplishments; however, they leave limited
flexibility in what we respectfully submit is inadequate funding in the
President's budget. Without the added funds we will need to reduce
important programs and services. The following are not all inclusive
but exemplify the actions we will be required to undertake if we are
not funded as requested.
1. Technology.--Student curricula demand state-of-the-art
technology. Students depend on technology updates to prepare for work.
For deaf and hard-of-hearing students, instructional delivery
technology is critical. We require $1,000,000 per year to remain
current.
2. Endowment.--The Education of the Deaf Act authorizes matching
private gifts from appropriations, reducing dependence on federal
funds. In fiscal year 2007 we matched over $800,000; we expect to match
over $1,000,000 in fiscal year 2008. We need to continue matching to
follow through on commitments made to donors.
3. Outreach and Enrollment.--Approximately $500,000 supports
programs that: attract junior/senior high school students; create a
community college referral program to enhance college preparation and
transferability; and revamp English programs to help students to
improve their reading and writing skills. All increase future
enrollment of deaf and hard-of-hearing students at the university
level. Limited funding may impact these efforts.
4. Open Positions.--Current and future position openings will not
be filled. The impact of a freeze depends on where vacancies appear.
The position reduction we planned and implemented from fiscal year 2003
through fiscal year 2007 leaves few options today that will not
directly impact services to students; this is especially true in light
of the significant enrollment increases mentioned earlier.
Our fiscal year 2009 operations request represents costs driven by
increases in salary, health benefits, and energy costs, as well as RIT
service charges that have the same inflationary pressures. We do not
ask for funds to address program modifications; we will reallocate to
meet those needs. Our experience from fiscal year 2003 to fiscal year
2007 proves we can and will do this without additional appropriations.
Our fiscal year 2009 request was submitted in June 2007, a full 15
months before the fiscal year begins. NTID is a dynamic institution,
and needs changed significantly in the interim; while this is not an
unusual occurrence which we normally are able to accommodate, this year
we are seriously concerned that the magnitude of the changes may
overwhelm us.
But at the same time, we would like you to be aware that there is
also a decrease in another part of our request; our original
construction request for $1,640,000 has been reduced by nearly 30
percent to $1,175,000. We accomplished this by negotiating cost-sharing
with RIT for two projects in the original submission.
NTID is committed to providing exemplary education for deaf and
hard-of-hearing students in a cost-effective manner and has a long
history of successful stewardship of federal funds.

ENROLLMENT

Total enrollment is at 1,343 for school year 2007-08 (fiscal year
2008), and was 1,250 students last year as we began fiscal year 2007.
This dramatic increase of 93 students (7.4 percent) brings us to the
second largest enrollment in our 40-year history, just 15 students
below our peak 24 years ago. NTID anticipates maintaining or increasing
enrollment for school year 2008-09 (fiscal year 2009). A five-year
history of our enrollment numbers follows.

NTID ENROLLMENTS: 5-YEAR HISTORY
----------------------------------------------------------------------------------------------------------------
Deaf and hard-of-hearing students Hearing students
-----------------------------------------------------------------------
School year Graduate Grand
Undergrad ------------------ Subtotal Interpreting MSSE Sub- Total
RIT MSSE program Total
----------------------------------------------------------------------------------------------------------------
2003-2004....................... 1,064 45 41 1,150 92 28 120 1,270
2004-2005....................... 1,055 42 49 1,146 100 35 135 1,281
2005-2006....................... 1,013 53 38 1,104 116 36 152 1,256
2006-2007....................... 1,017 47 31 1,095 130 25 155 1,250
2007-2008....................... 1,103 51 31 1,185 130 28 158 1,353
----------------------------------------------------------------------------------------------------------------

The number of students in our interpreting program has grown
substantially in recent years. The number in our graduate secondary
teacher preparation program (MSSE) has fluctuated (totaling both MSSE
columns above), and the total of deaf and hard-of-hearing students
increased dramatically from 1,095 in 2006-2007 to 1185 in 2007-2008 an
increase of 90 students (8.2 percent).

STUDENT ACCOMPLISHMENTS

Our placement rate for graduates is 95 percent placed in jobs
commensurate with the level of their education (using the Bureau of
Labor Statistics methodology). Over the last five years, 64 percent
were employed in business and industry, 26 percent in education/non
profits, and 10 percent in government.
In fiscal year 2005, NTID, the Social Security Administration, and
Cornell University examined over 13,000 NTID applicants. We learned
NTID graduation has significant economic benefits. By age 50, deaf and
hard-of-hearing baccalaureate graduates earn on average $6,021 more per
year than those with associate degrees, who in turn earn $3,996 more
per year on average than those who withdraw. Students who withdraw earn
$4,329 more than those who are not admitted. Students who withdraw also
experience twice the rate of unemployment as graduates.
The same studies show 60 percent of students at NTID receive
Supplemental Security Income benefits, but when they are age 50, less
than 3 percent draw these benefits. Graduates also access Social
Security Disability Insurance (an unemployment benefit), at far lesser
rates than withdrawals; by age 50, withdrawals were twice as likely to
be receiving these benefits as graduates. A large percentage of school
leavers without a degree will continue to depend heavily on federal
income support throughout their lives. But NTID graduates have
significantly reduced dependence on welfare programs.
Considering the added taxes graduates pay as a result of their
increased earnings and the savings derived from reduced dependency on
the federal income support programs, the federal investment in NTID
returns significant societal dividends.
NTID clearly makes a significant, positive difference in earnings,
and in lives.

NTID BACKGROUND

Academic Programs: NTID offers high quality, career-focused,
associate degree programs preparing students for specific well-paying
technical careers. A cooperative education component ties closely to
high demand employment opportunities. Expanding transfer associate
degree programs better serve the higher achieving segment of our
student population who seek bachelors and masters degrees in an
increasingly demanding marketplace. These associate transfer programs
provide seamless transition to baccalaureate studies. We also support
students in RIT baccalaureate programs. One of NTID's greatest
strengths is our outstanding track record of assisting high-potential
students gain admission to and graduate from the other colleges of RIT
at rates that are better than their hearing peers.
Research: The research program is guided and organized according to
these general research areas: language and literacy, teaching and
learning, socio-cultural influences, career development, technology
integration, and institutional research. All benefit the deaf and hard-
of-hearing population.
Outreach: Extended outreach activities to junior/senior high school
students expand their horizons regarding a college education. We also
serve other universities and post-college adults.
Student Life: The new CSD Student Development Center, funded by a
$2,000,000 private gift and a $1,500,000 fiscal year 2005 federal
appropriations, opened a year ago. Our activities conducted there
foster student leadership and community service, and provide
opportunities for students to explore other educational interests.

SUMMARY

It is extremely important that our funding be provided at the full
level detailed in this testimony, particularly in light of the
unanticipated impacts described above; even at this level, some service
reductions may be necessary should we be unable to offset these costs.
We will continue our mission of preparing deaf and hard-of-hearing
people to enter the workplace and society.
Our alumni have demonstrated that they can achieve independence,
contribute to society, earn a living, and live a satisfying life as a
result of NTID. Research shows that NTID graduates over their lifetimes
are employed at a much higher rates, earn substantially more (therefore
paying significantly more in taxes), and participate at a much lower
rate in federal welfare programs than those who apply but do not attend
NTID or who withdraw.
We are hopeful that the members of the Committee will agree that
NTID, with its outstanding record of service to deaf and hard-of-
hearing people, remains deserving of their support and confidence.
______

Prepared Statement of the NephCure Foundation

ONE FAMILY'S STORY

Chairman Harkin and members of the subcommittee thank you for the
opportunity to present testimony today, I am Dee Ryan and my husband is
Lieutenant Colonel John Kevin Ryan, an Iraq war veteran. I would like
to tell you about my 6 year old daughter Jenna's nephrotic syndrome
(NS), a medical problem caused by rare diseases of the kidney filter.
When affected, these filters leak protein from the blood into the urine
and often cause kidney failure requiring dialysis or kidney
transplantation. We have been told by our physician that Jenna has one
of two filter diseases called Minimal Change Disease (MCD) or Focal and
Segmental Glomerulosclerosis (FSGS). According to a Harvard University
report there are presently 73,000 people in the United States who have
lost their kidneys as a result of FSGS. Unfortunately, the causes of
FSGS and other filter diseases are very poorly understood.
In October 2007 my daughter began to experience general swelling of
her body and intermittent abdominal pain, fatigue and general malaise.
Jenna began to develop a cough and her stomach became dramatically
distended. We rushed Jenna to the emergency room where her breathing
became more and more labored and her pulse raced. She had symptoms of
pulmonary edema, tachycardia, hypertension, and pneumonia. Her lab
results showed a large amount of protein in the urine and a low
concentration of the blood protein albumin, consistent with the
diagnosis of FSGS. Jenna's condition did not begin to stabilize for
several frightening days.
Following her release from the hospital we had to place Jenna on a
strict diet which limited her consumption of sodium to no more than
1,000 mg per day. Additionally, Jenna was placed on a steroid regimen
for the next 3 months. We were instructed to monitor her urine protein
levels and to watch for swelling and signs of infection, in order to
avoid common complications such as overwhelming infection or blood
clots. Because of her disease and its treatment, which requires strong
suppression of the immune system, Jenna did have a serious bacterial
infection several months after she began treatment.
We are frightened by her doctor's warnings that NS and its
treatment are associated with growth retardation and other medical
complications including heart disease. As a result of NS, Jenna has
developed hypercholesterolemia and we worry about the effects the
steroids may have on her bones and development. This is a lot for a
little girl in kindergarten to endure.
Jenna's prognosis is currently unknown because NS can reoccur. Even
more concerning to us is that Jenna may eventually lose her kidneys
entirely and need dialysis or a kidney transplant. While kidney
transplantation might sound like a cure, in the case of FSGS, the
disease commonly reappears after transplantation. And even with a
transplant, end stage renal disease caused by FSGS dramatically
shortens one's life span.
The NephCure Foundation has been very helpful to my family. They
have provided us with educational information about NS, Minimal Change
Disease, and FSGS and the organization works to provide grant funding
to scientists for research into the cause and cure of NS.
Mr. Chairman, because the causes of Nephrotic Syndrome are poorly
understood, and because we have a great deal to learn in order to be
able to effectively treat NS, I am asking you to please significantly
increase funding for the National Institutes of Health so that
treatments can be found for other people like Jenna who suffer from NS.
Also, please support the establishment of a collaborative research
network that would allow scientists to create a pediatric patient
registry and biobank for NS/FSGS, and that would allow coordinated
studies of these deadly diseases for the first time. Finally, please
urge the National Institute of Diabetes and Digestive and Kidney
Disease (NIDDK) to continue to focus on FSGS/NS research in general,
consistent with the recent program announcement entitled Grants for
Basic Research in Glomerular Disease (R01) (PA-07-367) .
Mr. Chairman, on behalf of the thousands of people suffering from
NS and FSGS and the NephCure Foundation, thank you for this chance to
speak before the Subcommittee and for your consideration of my request;
Thank you.

MORE RESEARCH IS NEEDED

We are no closer to finding the cause or the cure of FSGS.
Scientists tell us that much more research needs to be done on the
basic science behind the disease.
NFC would also like to see the Office of Rare Disease (ORD) to
establish a FSGS Clinical Research Network within the Rare Disease
Clinical Research Consortia. The development of a Clinical Research
Network would allow for further collaboration between researchers and
an expansion of the clinical understanding and treatment of FSGS.
NCF is also grateful to the NIDDK for issuing of a program
announcement (PAs) that serve to initiate grant proposals on glomerular
disease The PA, issued in March of 2006, is glomerular-disease
specific. The announcement will utilize the R01 mechanism to award
researchers funding.
We ask the Committee to encourage the ORD to establisht a FSGS
Clinical Research Network to expand FSGS research. We also ask the
NIDDK to continue to issue glomerular disease program announcements.

TOO LITTLE EDUCATION ABOUT A GROWING PROBLEM

When glomerular disease strikes, the resulting NS causes a loss of
protein in the urine and edema. The edema often manifests itself as
puffy eyelids, a symptom that many parents and physicians mistake as
allergies. With experts projecting a substantial increase in nephrotic
syndrome in the coming years, there is a clear need to educate
pediatricians and family physicians about glomerular disease and its
symptoms.
We also applaud the work of the NIDDK in establishing the National
Kidney Disease Education Program (NKDEP), and we seek your support in
urging the NIDDK to make sure that glomerular disease remains a focus
of the NKDEP.
We ask the Committee to encourage the NIDDK to have glomerular
disease receive high visibility in its education and outreach efforts,
and to continue these efforts in conjunction with the NephCure
Foundation's work. These efforts should be targeted towards both
physicians and patients.

GLOMERULAR DISEASE STRIKES MINORITY POPULATIONS

Nephrologists tell us that glomerular disease strikes a
disproportionate number of African-Americans. No one knows why this is,
but some studies have suggested that a genetic sensitivity to sodium
may be partly responsible. DNA studies of African Americans who suffer
from FSGS may lead to insights that would benefit the thousands of
African Americans who suffer from kidney disease.
I ask that the NIH pay special attention to why this disease
affects African-Americans to such a large degree. The NephCure
Foundation wishes to work with the NIDDK and the National Center for
Minority Health and Health Disparities (NCMHD) to encourage the
creation of programs to study the high incidence of glomerular disease
within the African American population.
There is also evidence to suggest that the incidence of glomerular
disease is higher among Hispanic Americans than in the general
population. An article in the February 2006 edition of the NIDDK
publication Recent Advances and Emerging Opportunities, discussed the
case of Frankie Cervantes, a 6 year old boy of Mexican and Panamian
descent. Frankie has FSGS received a transplanted kidney from his
mother. We applaud the NIDDK for highlighting FSGS in their
publication, and for translating the article about Frankie into both
English and Spanish. Only through similar efforts at cross-cultural
education can the African-American and Hispanic-American communities
learn more about glomerular disease.
We ask the Committee to join with us in urging the NIDDK and the
National Center for Minority Health and Health Disparities (NCMHD) to
collaborate on research that studies the incidence and cause of this
disease among minority populations. We also ask that the NIDDK and the
NCMHD undertake culturally appropriate efforts aimed at educating
minority populations about glomerular disease.

PATIENT REGISTRY AND BIOBANK

Experts currently believe glomerular disease is increasing in
frequency and it is often misdiagnosed or undetected and, as a result,
is often unreported. Since many cases of glomerular disease are
unreported, it is difficult to ascertain different aspects of the
disease and to form more comprehensive data sets on the patient
population.
It is also possible that the development of a biobank would be
beneficial in understanding the genetic components of glomerular
disease and their corresponding interactions with environmental
factors.
We ask the Committee to support funding for the first-ever national
database/registry for FSGS within NIDDK. Experts say that the incidence
of FSGS is increasing and that the disease is often misdiagnosed,
undetected or unrecorded. While databases and registries have helped
defeat other diseases, one does not exist for FSGS. We also ask the
Committee support the development of a biobank as a further means of
understanding the causes of FSGS, both genetic and environmental.
______

Prepared Statement of the Neurofibromatosis, Inc., Northeast and Texas
Neurofibromatosis Foundation

NATIONAL INSTITUTES OF HEALTH

Thank you for the opportunity to present testimony to the
subcommittee on the importance of continued funding at the National
Institutes of Health (NIH) for Neurofibromatosis (NF), a terrible
genetic disorder closely linked to cancer, learning disabilities, heart
disease, memory loss, brain tumors, and other disorders affecting up to
175 million Americans in this generation alone. Thanks in large measure
to this subcommittee's strong and enduring support, scientists have
made enormous progress since the discovery of the NF1 gene in 1990
resulting in clinical trials now being undertaken at NIH with broad
implications for the general population.
On behalf of Neurofibromatosis, Inc., Northeast and the Texas
Neurofibromatosis Foundation, both participants in a national coalition
of NF advocacy groups, we speak on behalf of the 100,000 Americans who
suffer from NF as well as approximately 175 million Americans who
suffer from diseases linked to NF such as cancer, brain tumors, heart
disease, memory loss and learning disabilities.

WHAT IS NEUROFIBROMATOSIS (NF)?

NF is a genetic disorder involving the uncontrolled growth of
tumors along the nervous system which can result in terrible
disfigurement, deformity, deafness, blindness, brain tumors, cancer,
and/or death. NF can also cause other abnormalities such as unsightly
benign tumors across the entire body and bone deformities. In addition,
approximately one-half of children with NF suffer from learning
disabilities. While not all NF patients suffer from the most severe
symptoms, all NF patients and their families live with the uncertainty
of not knowing whether they will be seriously affected because NF is a
highly variable and progressive disease.
NF is not rare. It is three times more common than Multiple
Sclerosis (MS) and Cystic Fibrosis combined, but is not widely known
because it has been poorly diagnosed for many years. Approximately
100,000 Americans have NF, and it appears in approximately one in every
3,000 births. It strikes worldwide, without regard to gender, race or
ethnicity. Approximately 50 percent of new NF cases result from a
spontaneous mutation in an individual's genes, and 50 percent are
inherited. There are two types of NF: NF1, which is more common, and
NF2, which primarily involves tumors causing deafness and balance
problems. In addition, advances in NF research stand to benefit over
175 million Americans in this generation alone because NF, the most
common neurological disorder caused by a single gene, is directly
linked to many of the most common diseases affecting the general
population.
If a child was diagnosed with NF it would mean tumors could grow
anytime, anywhere on his/her nervous system, from the day he/she was
born until the day he/she died with no way to predict when or how
severely the tumors would affect his/her body--and no viable way to
treat the disease outside of surgery--which often results in more
tumors that grow twice as fast. That same child would then have a 50
percent chance to pass the gene to his/her children. That's an
overwhelming diagnosis and it bears repeating: NF is one of the most
common genetic disorders in our country and has no cure and no viable
treatment. But that is changing. The immediate future holds real
promise.

LINK TO OTHER ILLNESSES

Researchers have determined that NF is closely linked to cancer,
heart disease, learning disabilities, memory loss, brain tumors, and
other disorders including deafness, blindness and orthopedic disorders.
Cancer.--Research has demonstrated that NF's tumor suppressor
protein, neurofibromin, inhibits RAS, one of the major malignancy
causing growth proteins involved in 30 percent of all cancer.
Accordingly, advances in NF research may well lead to treatments and
cures not only for NF patients but for all those who suffer from cancer
and tumor-related disorders. Similar studies have also linked epidermal
growth factor receptor (EGF-R) to malignant peripheral nerve sheath
tumors (MPNSTs), a form of cancer which disproportionately strikes NF
patients.
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 involved in cancer also causes heart valves to
close. Neurofibromin, the protein produced by a normal NF1 gene,
suppresses ras, thus opening up the heart valve. Promising new research
has also connected NF1 to cells lining the blood vessels of the heart,
with implications for other vascular disorders including hypertension,
which affects approximately 50 million Americans. Researchers believe
that further understanding of how an NF1 deficiency leads to heart
disease may help to unravel molecular pathways affected in genetic and
environmental causes of heart disease.
Learning disabilities.--Learning disabilities are the most common
neurological complication in children with NF1. Research aimed at
rescuing learning deficits in children with NF could open the door to
treatments affecting 35 million Americans and 5 percent of the world's
population who also suffer from learning disabilities. Leading
researchers have already rescued learning deficits in both mice and
fruit flies with NF1 with a number of drugs, and clinical trials have
now been approved by the FDA. This NF research could potentially save
Federal, State, and local governments, as well as school districts
billions of dollars annually in special education costs resulting from
a treatment for learning disabilities.
Memory Loss.--Researchers have also determined that NF is closely
linked to memory loss and are now investigating conducting clinical
trials with drugs that may not only cure NF's cognitive disorders but
also result in treating memory loss as well with enormous implications
for patients who suffer from Alzheimer's disease and other dementias.
Deafness.--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.
Autism.--While there is no firm scientific evidence at this point,
some published studies have shown, and leading researchers have stated,
that there is reason to believe there is an implication between NF and
Autism.

SCIENTIFIC ADVANCES

Thanks in large measure to this subcommittee's support; scientists
have made enormous progress since the discovery of the NF1 gene in
1990. Major advances in just the past few years have ushered in an
exciting era of clinical and translational research in NF with broad
implications for the general population.
These recent advances have included:
--Phase II and Phase III clinical trials involving new drug
therapies;
--Creation of a National Clinical Trials Consortia and NF Centers;
--Successfully eliminating tumors in NF1 and NF2 mice with the same
drug;
--Developing advanced mouse models showing human symptoms;
--Rescuing learning deficits and eliminating tumors in mice with the
same drug;
--Linking NF to vascular disorders such as congenital heart disease
and hypertension, affecting more than 50 million Americans; and
--Conducting natural history studies to analyze the progression of
the disease.

FUTURE DIRECTIONS

NF research has now advanced to the translational and clinical
stages which hold incredible promise for NF patients, as well as for
patients who suffer from many of the diseases linked to NF. This
research is costly and will require an increased commitment on the
federal level. Specifically, future investment in the following areas
would continue to advance research on NF:
--Clinical trials;
--Funding of a clinical trials network to connect patients with
experimental therapies;
--DNA Analysis of NF tissues;
--Development of NF Centers, tissue banks, and patient registries;
--Development of new drug and genetic therapies;
--Further development of advanced animal models;
--Expansion of biochemical research on the functions of the NF gene
and discovery of new targets for drug therapy; and
--Natural history studies and identification of modifier genes--
studies are already underway to provide a baseline for testing
potential therapies and differentiate among different
phenotypes of NF.

CONGRESSIONAL SUPPORT FOR NF RESEARCH

The enormous promise of NF research--and its potential to benefit
over 175 million Americans in this generation alone--has gained
increased recognition from Congress and the NIH. This is evidenced by
the fact that six institutes at NIH are currently supporting NF
research (NCI, NHLBI, NINDS, NIDCD, NHGRI, AND NCRR), and NIH's total
research portfolio has increased from $3 million in fiscal year 1990 to
$15 million in fiscal year 2008. However, we are concerned that the NF
research portfolio at NIH has declined by several million dollars in
recent years (fiscal year 2005 $17.5 million, fiscal year 2006 $16
million, fiscal year 2007 $15.8 million, fiscal year 2008 $15.4
million), despite appropriations report language recommending a greater
investment. Given the potential offered by NF research for progress
against a range of diseases, we are hopeful that NIH will substantially
increase NF research funding.
We appreciate the subcommittee's strong support for NF research and
will continue to work with you to ensure that opportunities for major
advances in NF research are aggressively pursued.
Thank you again for the opportunity to tell you of the progress and
potential of NF research.
______

Prepared Statement of the New England Anti-Vivisection Society Project
R&R: Release and Restitution for Chimpanzees in U.S. Laboratories

NEAVS/Project R&R requests that no Federal funding be appropriated
for:
--breeding of chimpanzees or other great apes for research
--transfer of federally-owned chimpanzees to private ownership
--housing/maintenance/endowments for federally-owned chimpanzees in
private facilities
--maintenance of surplus chimpanzees except in retirement in
sanctuary
--research involving the use of chimpanzees
NEAVS/Project R&R requests that Federal funding be appropriated
for:
--transfer of federally-owned chimpanzees into sanctuary
--housing/maintenance grants for federally-owned chimpanzees in
sanctuary
--retirement of all ``surplus'' chimpanzees now held in laboratories
--reallocation of funding for chimpanzee research into funding non-
animal research methods

SUBSTANTIATING INFORMATION

1. The National Center for Research Resources (NCRR) announced a
permanent end to funding for the breeding of federally-owned and
supported chimpanzees (including funding NIH projects requiring
chimpanzee breeding). This NCRR decision recognizes the exorbitant
costs of lifetime care of chimpanzees in laboratory settings and its
consequent drain to limited and precious research dollars. No other
Federal agency should threaten this fiscally, ethically, and
scientifically sound NCRR decision by providing funding for breeding of
federally-owned chimpanzees. To do so would perpetuate an animal model
that has been of limited or no value, especially in relation to the
costs they require for their care and maintenance. Chimpanzees live for
decades and 71 percent of the American public, according to an
independent public opinion survey, believe those in labs for 10 or more
years should be retired. A current estimate of the U.S. population puts
that figure at approximately 93 percent of the chimpanzees now held in
labs.
2. The government is currently spending close to $10 million each
year to care for approximately 600 federally-owned or supported
chimpanzees (nearly $1.0 million per chimpanzee's lifetime). Breeding
perpetuates this fiscal burden on the Government. Further, grants to
private companies, like Charles River Laboratory's (CRL) Federal $43
million 10 year grant could have gone further, covered more
chimpanzees, and provided superior care had it been appropriated for
sanctuary care and not the laboratory care provided by CRL at
Alamogordo. This funding is an example of Federal subsidizing of
private profits, not an example of sound research dollar priorities.
3. The United States is still managing the ``surplus of
chimpanzees'' previously bred to be available to HIV research. Today
their use in HIV/AIDS research has diminished to the point of hardly
existent. They proved to be a poor, even dangerous model in not only
AIDS research but in every area of major ``killer diseases'' for
humans, including cancer, heart disease, stroke, etc. (An Assessment of
the Role of Chimpanzees in AIDS Vaccine Research, Jarrod Bailey, Ph.D.,
2008)
4. Studies have indicated that the majority of chimpanzee research
published (in addition to research not accepted for publication) is
never later cited in studies to do with human prophylactic, diagnostic,
or therapeutic methods. This indicates that in general, the chimpanzee
model has made limited contributions to human health and in many cases
has actually led to dangerously erroneous applications to humans.
(Chimpanzee Research: An Examination of Its Contribution to Biomedical
Knowledge and Efficacy in Combating Human Diseases, Jarrod Bailey,
Ph.D. and Jonathan Balcombe, Ph.D., 2007)
5. The transfer of government-owned and supported chimpanzees into
private facilities with accompanying Federal endowments would
perpetuate their financial burden on taxpayers, and only private
facilities would profit from such an arrangement. The lifetime support
of federally-owned chimpanzees is required by the CHIMP Act. The
government can provide this care more efficiently and effectively
through maintaining ownership and transferring all government-owned
chimpanzees into the federally supported sanctuary system or private
sanctuary that meets those standards. The government can share the cost
of their lifetime care with private donations from the public, who
would be assured that the chimpanzees are no longer available for
research. Private laboratories interested in ``maintaining'' a
chimpanzee population are a fiscally inefficient solution for the
government. Such facilities do not provide the quality care that
sanctuaries can provide. The private warehousing and/or lifetime use of
chimpanzees in private research--supported with government taxpayer
dollars--will lead to public outcry.
6. If private industry receives Federal support for breeding and
using government owned, once owned or government endowed chimpanzees
for their own private research, then private industry would be
unfairly, and perhaps illegally, benefiting from federally-owned
``resources'' meant for the betterment of the American public, not for
the profit of private industry.
7. To date, the private sector has not been fiscally responsible
for the lifetime care of chimpanzees once their use to them for private
profit is over. When their chimpanzees are retired, the private sector
has not, to date, offered financial compensation for their chimpanzees'
lifetime care. Instead, on the few occasions where the chimpanzees were
sent to sanctuary with some funding, the financial compensation falls
far short of what is actually needed, leaving the burden of
responsibility on the private facilities and their public donors.
8. If the Government: transfers all approximately 600 federally-
owned chimpanzees to the national sanctuary system or to private
sanctuary that meets or exceeds these standards; appropriates to those
sanctuaries the funding currently being given to chimpanzee
laboratories; and, prohibits breeding, there is an end to the financial
burden that this misused and underproductive animal model has caused
the government. The Government needs a solution, and the funding
priority suggestions set forth herein would offer a major step toward
such a solution.
9. Transferring all federally-owned chimpanzees to sanctuary will:
(a) consolidate and decrease costs; (b) provide better care; and, (c)
offer the public the humane solution they are asking for.
10. Scientific justification for maintaining the exorbitant costs
associated with such a physically strong, intellectual curious,
socially and emotionally complex species as a chimpanzee does not
exists. A 2007 article, ``The Endangered Lab Chimp'' in Science, noted
that ``a huge number'' of chimpanzees are not being used in active
research protocols and are therefore ``just sitting there.'' If
breeding ends and current mortality rates continue (as they are
expected given the aging population of chimpanzees in U.S. labs), the
government will have no--or a bare minimal--financial responsibility
for the chimpanzees it owns within 20-30 years. No Federal funding for
breeding will ensure that no breeding of federally-owned or supported
chimpanzees for research will occur in fiscal year 2009 and be a major
step to ending the government's non-productive, high cost involvement
in chimpanzee research. As years of a voluntary breeding moratorium
showed, private industry is not willing to breed without government
support. It understands the costs and refuses to adequately provide for
the lifetime care of chimpanzees it already owns. If the use of
chimpanzees was lucrative or necessary, then the private industry's
dollars and practices would reflect that. However, it is not. The
Federal Government needs to follow suit in such ``wise business''
decisions.
11. The American and world (great ape research is banned or
severely limited in eight scientifically advanced nations and a
European Union wide ban is expected to pass soon) public are deeply
concerned about the use of chimpanzees in research. Their close
emotional, cognitive, and social similarities to humans have put them
in a unique category of interspecies ethics. This moral reality has
been acknowledged by the government (requirements for their care in the
CHIMP Act that apply to no other animal species used in research) and
scientists (several private laboratories that used chimpanzees have
closed or stop using them), and the American public are clearly
concerned about these issues. As the voice of the American public, our
administrative offices should consider that: 90 percent of Americans
believe it is unacceptable to confine chimpanzees individually in
government-approved cages; 71 percent believe that chimpanzees who have
been in the laboratory for over 10 years should be retired to
sanctuary; 54 percent believe that it is unacceptable for chimpanzees
to ``undergo research which causes them to suffer for human benefit'';
and, twice as many American's support an outright ban on chimpanzee
research as do those who oppose such a ban.
12. Therefore, we respectfully request the following committee
report language: ``The Committee directs that funds provided in this
act not be used: to support the breeding of chimpanzees or other great
apes for research; to support research that requires breeding of
chimpanzees; to support the transfer of ownership of federally-owned
chimpanzees to private entities (including endowments for their
maintenance); to maintain surplus chimpanzees except in retirement in
sanctuary; or to fund new research involving the use of chimpanzees.
The Committee directs that funds provided in this Act be used:
to transfer federally-owned chimpanzees into sanctuary; to house
and maintain federally-owned chimpanzees in sanctuary; to retire all
``surplus'' chimpanzees now held in laboratories; and to reallocate
funding from chimpanzee research into non-animal research methods.''
______

Prepared Statement of the Oncology Nursing Society

OVERVIEW

The Oncology Nursing Society (ONS) appreciates the opportunity to
submit written comments for the record regarding fiscal year 2009
funding for cancer and nursing related programs. ONS, the largest
professional oncology group in the United States, composed of more than
35,000 nurses and other health professionals, exists to promote
excellence in oncology nursing and the provision of quality care to
those individuals affected by cancer. As part of its mission, the
Society honors and maintains nursing's historical and essential
commitment to advocacy for the public good.
This year more than 1,437,180 million Americans will be diagnosed
with cancer, and more than 565,650 will lose their battle with this
terrible disease. Overall, age is the number one risk factor for
developing cancer. Approximately 77 percent of all cancers are
diagnosed at age 55 and older.\1\ Despite these grim statistics,
significant gains in the War Against Cancer have been made through our
Nation's investment in cancer research and its application. Research
holds the key to improved cancer prevention, early detection,
diagnosis, and treatment, but such breakthroughs are meaningless,
unless we can deliver them to all Americans in need. Moreover, a recent
survey of ONS members found that the nursing shortage is having an
adverse impact in oncology physician offices and hospital outpatient
departments. Some respondents indicated that when a nurse leaves their
practice, they are unable to hire a replacement due to the shortage--
leaving them short-staffed and posing scheduling challenges for the
practice and the patients. These vacancies in all care settings create
significant barriers to ensuring access to quality care.
---------------------------------------------------------------------------
\1\ American Cancer Society. Cancer Facts and Figures 2008.
Atlanta: American Cancer Society: 2008.
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To ensure that all people with cancer have access to the
comprehensive, quality care they need and deserve, ONS advocates
ongoing and significant federal funding for cancer research and
application, as well as funding for programs that help ensure an
adequate oncology nursing workforce to care for people with cancer. The
Society stands ready to work with policymakers at the local, state, and
federal levels to advance policies and programs that will reduce and
prevent suffering from cancer and sustain and strengthen the Nation's
nursing workforce. We thank the subcommittee for its consideration of
our fiscal year 2009 funding request detailed below.

SECURING AND MAINTAINING AN ADEQUATE ONCOLOGY NURSING WORKFORCE

Oncology nurses are on the front lines in the provision of quality
cancer care for individuals with cancer--administering chemotherapy,
managing patient therapies and side-effects, working with insurance
companies to ensure that patients receive the appropriate treatment,
providing counseling to patients and family members, and engaging in
myriad other activities on behalf of people with cancer and their
families. Cancer is a complex, multifaceted chronic disease, and people
with cancer require specialty-nursing interventions at every step of
the cancer experience. People with cancer are best served by nurses
specialized in oncology care, who are certified in that specialty.
As the overall number of nurses will drop precipitously in the
coming years, we likely will experience a commensurate decrease in the
number of nurses trained in the specialty of oncology. With an
increasing number of people with cancer needing high-quality health
care, coupled with an inadequate nursing workforce, our Nation could
quickly face a cancer care crisis of serious proportion, with limited
access to quality cancer care, particularly in traditionally
underserved areas. A study in the New England Journal of Medicine found
that nursing shortages in hospitals are associated with a higher risk
of complications--such as urinary tract infections and pneumonia,
longer hospital stays, and even patient death.\2\ Without an adequate
supply of nurses, there will not be enough qualified oncology nurses to
provide the quality cancer care to a growing population of people in
need, and patient health and well-being could suffer.
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\2\ Needleman J., Buerhaus P., Mattke S., Stewart M., Zelevinsky K.
``Nurse-Staffing Levels and the Quality of Care in Hospitals.'' New
England Journal of Medicine 346:, (May 30, 2002): 1715-1722.
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Further, of additional concern is that our Nation also will face a
shortage of nurses available and able to conduct cancer research and
clinical trials. With a shortage of cancer research nurses, progress
against cancer will take longer because of scarce human resources
coupled with the reality that some practices and cancer centers
resources could be funneled away from cancer research to pay for the
hiring and retention of oncology nurses to provide direct patient care.
Without a sufficient supply of trained, educated, and experienced
oncology nurses, we are concerned that our Nation may falter in its
delivery and application of the benefits from our federal investment in
research.
ONS has joined with others in the nursing community in advocating
$200 million as the fiscal year 2009 funding level necessary to support
implementation of the Nurse Reinvestment Act and the range of nursing
workforce development programs housed at the U.S. Health Resources and
Services Administration (HRSA). Enacted in 2002, the Nurse Reinvestment
Act (Public Law 107-205) included new and expanded initiatives,
including loan forgiveness, scholarships, career ladder opportunities,
and public service announcements to advance nursing as a career.
Despite the enactment of this critical measure, HRSA fails to have the
resources necessary to meet the current and growing demands for our
Nation's nursing workforce. For example, in fiscal year 2006 HRSA
received 4,222 applications for the Nurse Education Loan Repayment
Program, but only had the funds to award 615 of those applications.\3\
Also, in fiscal year 2007 HRSA received 6,611 applications for the
Nursing Scholarship Program, but only had funding to support 220
awards.\4\
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\3\ U.S. Health Resources and Services Administration: Nurse
Education Loan Repayment Program:http://bhpr.hrsa.gov/nursing/
loanrepay.htm.
\4\ U.S. Health Resources and Services Administration: Nursing
Scholarship Program Statistics: http://bhpr.hrsa.gov/nursing/
scholarship/.
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While a number of years ago one of the biggest factors associated
with the shortage was a lack of interested and qualified applicants,
due to the efforts of the nursing community and other interested
stakeholders, the number of applicants is growing. As such, now one of
the greatest factors contributing to the shortage is that nursing
programs are turning away qualified applicants to entry-level
baccalaureate programs, due to a shortage of nursing faculty. According
to the American Association of Colleges of Nursing (AACN), U.S. nursing
schools turned away 42,866 qualified applicants from baccalaureate and
graduate nursing programs in 2006, due to insufficient number of
faculty.\5\ The nurse faculty shortage is only expected to worsen with
time, as half of the RN workforce is expected to reach retirement age
with in the next 10 to 15 years.\6\ At the same time, significant
numbers of faculty are expected to retire in the coming years, with
insufficient numbers of candidates in the pipeline to take their
places. If funded sufficiently, the components and programs of the
Nurse Reinvestment Act will help address the multiple factors
contributing to the nursing shortage.
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\5\ American Association of Colleges of Nursing, ``2006-2007
Enrollment and Graduations in Baccalaureate and Graduate Programs in
Nursing.'' http://www.aacn.nche.edu/IDS/datarep.htm, March 2007.
\6\ Preliminary Results: ``National Survey of Nurse Educators:
Compensation, Workload, and Teaching Practices.'' National League of
Nursing/Carnetgie Foundation. (February 7, 2007) http://www.nln.org/
newsreleases/pres_budget2007.htm.
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The nursing community opposes the President's fiscal year 2009
budget proposal that decreases nursing workforce funding by $46
million--a cut which eliminates all funding for advanced nursing
education programs. With additional funding in fiscal year 2009, these
important programs will have much-needed resources to address the
multiple factors contributing to the nationwide nursing shortage,
including the shortage of faculty--a principal factor contributing to
the current shortage. Advanced nursing education programs play an
integral role in supporting registered nurses interested in advancing
in their practice and becoming faculty. As such, these programs must be
adequately funded in the coming year.
ONS strongly urges Congress to provide HRSA with a minimum of $200
million in fiscal year 2009 to ensure that the agency has the resources
necessary to fund a higher rate of nursing scholarships and loan
repayment applications and support other essential endeavors to sustain
and boost our Nation's nursing workforce. Nurses--along with patients,
family members, hospitals, and others--have joined together in calling
upon Congress to provide this essential level of funding. The National
Coalition for Cancer Research (NCCR), a non-profit organization
comprised of 26 national organizations, is also advocating $200 million
for the Nurse Reinvestment Act in fiscal year 2009. ONS and its allies
have serious concerns that without full funding, the Nurse Reinvestment
Act will prove an empty promise, and the current and expected nursing
shortage will worsen, and people will not have access to the quality
care they need and deserve.

SUSTAIN AND SEIZE CANCER RESEARCH OPPORTUNITIES

Our Nation has benefited immensely from past federal investment in
biomedical research at the National Institutes of Health (NIH). ONS has
joined with the broader health community in advocating a 6.6 percent
increase ($31.1 billion) for NIH in fiscal year 2009. This will allow
NIH to sustain and build on its research progress, resulting from the
recent doubling of its budget, while avoiding the severe disruption to
that progress that would result from a minimal increase. Cancer
research is producing extraordinary breakthroughs--leading to new
therapies that translate into longer survival and improved quality of
life for cancer patients. We have seen extraordinary advances in cancer
research, resulting from our national investment, which have produced
effective prevention, early detection and treatment methods for many
cancers. To that end, ONS calls upon Congress to allocate $5.26 billion
to the National Cancer Institute (NCI) in fiscal year 2009 to support
the battle against cancer.
The National Institute of Nursing Research (NINR) supports basic
and clinical research to establish a scientific basis for the care of
individuals across the life span--from management of patients during
illness and recovery, to the reduction of risks for disease and
disability and the promotion of healthy lifestyles. These efforts are
crucial in translating scientific advances into cost-effective health
care that does not compromise quality of care for patients.
Additionally, NINR fosters collaborations with many other disciplines
in areas of mutual interest, such as long-term care for older people,
the special needs of women across the life span, bioethical issues
associated with genetic testing and counseling, and the impact of
environmental influences on risk factors for chronic illnesses, such as
cancer. ONS joins with others in the nursing community in advocating a
fiscal year 2009 allocation of $150 million for NINR.

BOOST OUR NATION'S INVESTMENT IN CANCER PREVENTION, EARLY DETECTION,
AND AWARENESS

Approximately two-thirds of cancer cases are preventable through
lifestyle and behavioral factors and improved practice of cancer
screening.\7\ Although the potential for reducing the human, economic,
and social costs of cancer by focusing on prevention and early
detection efforts remains great, our Nation does not invest
sufficiently in these strategies. The Nation must make significant and
unprecedented Federal investments today to address the burden of cancer
and other chronic diseases, and to reduce the demand on the healthcare
system and diminish suffering in our Nation both for today and
tomorrow.
---------------------------------------------------------------------------
\7\ American Cancer Society.
---------------------------------------------------------------------------
As the Nation's leading prevention agency, the Centers for Disease
Control and Prevention (CDC) plays an important role in translating and
delivering, at the community level, what is learned from research.
Therefore, ONS joins with our partners in the cancer community in
calling on Congress to provide additional resources for the CDC to
support and expand much-needed and proven effective cancer prevention,
early detection, and risk reduction efforts. Specifically, ONS
advocates the following fiscal year 2009 funding levels for the
following CDC programs:
--$250 million for the National Breast and Cervical Cancer Early
Detection Program;
--$65 million for the National Cancer Registries Program;
--$25 million for the Colorectal Cancer Prevention and Control
Initiative;
--$50 million for the Comprehensive Cancer Control Initiative;
--$25 million for the Prostate Cancer Control Initiative;
--$5 million for the National Skin Cancer Prevention Education
Program;
--$10 million for the Ovarian Cancer Control Initiative;
--$5.5 million for the Geraldine Ferraro Blood Cancer Program;
--$145 million for the National Tobacco Control Program; and
--$65 million for the Nutrition, Physical Activity, and Obesity
Program.

CONCLUSION

ONS maintains a strong commitment to working with Members of
Congress, other nursing societies, patient organizations, and other
stakeholders to ensure that the oncology nurses of today continue to
practice tomorrow, and that we recruit and retain new oncology nurses
to meet the unfortunate growing demand that we will face in the coming
years. By providing the fiscal year 2009 funding levels detailed above,
we believe the subcommittee will be taking the steps necessary to
ensure that our Nation has a sufficient nursing workforce to care for
the patients of today and tomorrow and that our Nation continues to
make gains in our fight against cancer.
______

Prepared Statement of the Ovarian Cancer National Alliance

On behalf of the Ovarian Cancer National Alliance (the Alliance),
thank you for this opportunity to submit comments for the record
regarding the Alliance's fiscal year 2009 funding recommendations. We
believe these recommendations are critical to ensure advances to help
reduce and prevent suffering from ovarian cancer. For 11 years, the
Alliance has worked to increase awareness of ovarian cancer and
advocated for additional federal resources to support research that
would lead to more effective diagnostics and treatments.
As an umbrella organization with 45 State and local organizations,
the Alliance unites the efforts of survivors, grassroots activists,
women's health advocates and health care professionals to bring
national attention to ovarian cancer. Our sole mission is to conquer
ovarian cancer.
According to the American Cancer Society, in 2008, more than 22,000
American women will be diagnosed with ovarian cancer and approximately
15,000 will lose their lives to this terrible disease. Ovarian cancer
is the fifth leading cause of cancer death in women. Currently, more
than half of the women diagnosed with ovarian cancer will die within
five years. While ovarian cancer has early symptoms, there is no early
detection test. Most women are diagnosed in Stage III or Stage IV, when
survival rates are low. If diagnosed early, more than 90 percent of
women will survive for 5 years, but when diagnosed later, less than 30
percent will.
In addition, only a few treatments have been approved by the Food
and Drug Administration (FDA) for ovarian cancer treatment. These are
platinum-based therapies and women needing further rounds of treatment
are frequently resistant to them. More than 70 percent of ovarian
cancer patients will have a recurrence at some point, underlying the
need for treatments to which patients do not grow resistant.
For all of these problems, we urgently call on Congress to
appropriate funds to find solutions.
As part of this effort, the Alliance advocates for continued
federal investment in the Centers for Disease Control and Prevention's
(CDC) Ovarian Cancer Control Initiative. The Alliance respectfully
requests that Congress provide $10 million for the program in fiscal
year 2009.
The Alliance also fully supports Congress in taking action on
ovarian cancer through its recent passage of Johanna's Law: The
Gynecologic Cancer Education and Awareness Act [Public Law 109-475].
The Alliance respectfully requests that Congress provide the remaining
$10 million to implement Johanna's Law in fiscal year 2009.
Further, the Alliance urges Congress to continue funding the
Specialized Programs of Research Excellence (SPOREs), including the
four ovarian cancer sites. These programs are administered through the
National Cancer Institute (NCI) of the National Institutes of Health
(NIH). The Alliance respectfully requests that Congress provide a 9.5
percent increase to NCI in fiscal year 2009.

CENTERS FOR DISEASE CONTROL AND PREVENTION

The Ovarian Cancer Control Initiative
As the statistics indicate, late detection and, therefore, poor
survival are among the most urgent challenges we face in the ovarian
cancer field. The CDC's cancer program, with its strong capacity in
epidemiology and excellent track record in public and professional
education, is well positioned to address these problems. As the
Nation's leading prevention agency, the CDC plays an important role in
translating and delivering at the community level what is learned from
research, especially ensuring that those populations disproportionately
affected by cancer receive the benefits of our Nation's investment in
medical research.
Prompted by efforts from leaders of the Alliance and championed by
Representative Rosa DeLauro--with bipartisan, bicameral support--
Congress established the Ovarian Cancer Control Initiative at the CDC
in November 1999. Congress' directive to the agency was to develop an
appropriate public health response to ovarian cancer and conduct
several public health activities targeted toward reducing ovarian
cancer morbidity and mortality.
Through the OCCI, the National Comprehensive Cancer Control Program
is helping states address issues related to ovarian cancer. The program
currently funds efforts in California, Florida, Michigan, New York,
Pennsylvania, Texas and West Virginia. These projects are working to
develop ovarian cancer health messages for the general public and for
health care providers.
Johanna's Law: The Gynecologic Cancer Education and Awareness Act
It is critical for women and their health care providers to be
aware of the signs, symptoms and risk factors of ovarian and other
gynecologic cancers. Often, women and providers mistakenly confuse
ovarian cancer signs and symptoms with those of gastrointestinal
disorders or early menopause. While symptoms may seem vague--bloating,
pelvic or abdominal pain, increased abdominal size and bloating and
difficulty, eating or feeling full quickly, or urinary symptoms
(urgency or frequency)--they can be deadly without proper medical
intervention.
In recognition of the need for awareness and education, Congress
unanimously passed Johanna's Law in 2006, enacted in early 2007. This
law provides for an education and awareness campaign that will increase
providers' and women's awareness of all gynecologic cancers including
ovarian. Together, Johanna's Law and the Ovarian Cancer Control
Initiative will help increase awareness and understanding of ovarian
cancer and work to reduce ovarian cancer morbidity and mortality.
Already, with only a small amount of seed money, the CDC has
launched the Inside Knowledge: Get the Facts About Gynecologic Cancer
campaign to raise awareness of the five main types of gynecologic
cancer: ovarian, cervical, uterine, vaginal and vulvar. Many fact
sheets, including the ovarian cancer fact sheet, are already available
on the CDC's Web site for download. The CDC plans to develop broadcast
advertisements, posters--such as dioramas for bus stops--and other
print materials, a comprehensive brochure on gynecologic cancers, and
materials aimed at health care providers.

NATIONAL CANCER INSTITUTE

Specialized Programs of Research Excellence in the National Institutes
of Health
The Specialized Programs of Research Excellence were created by the
NCI in 1992 to support translational, organ site-focused cancer
research. The ovarian cancer SPOREs began in 1999. There are four
currently funded Ovarian Cancer SPOREs located at the MD Anderson
Cancer Center, the Fred Hutchinson Cancer Research Center, the Fox
Chase Cancer Center and the Dana Farber/Harvard Cancer Center.
These SPORE programs have made outstanding strides in understanding
ovarian cancer, as illustrated by their more than 300 publications as
well as other notable achievements, including the development of an
infrastructure between Ovarian SPORE institutions to facilitate
collaborative studies on understanding, early detection and treatment
of ovarian cancer.
Clinical Trials
The National Cancer Institute supports clinical research--the only
way to test the safety and efficacy of potential new treatments for
ovarian cancer. Two recent studies from NCI clinical trials show the
impact of intraperitoneal chemotherapy in treating ovarian cancer (when
chemotherapy is introduced directly into the woman's abdominal cavity,
rather than her bloodstream) and the importance of ultrasound expertise
in properly diagnosing the disease.
NCI supports the Gynecology Oncology Group, a more than 50-member
collaborative focusing on cancers of the female reproductive system. In
2007 alone, GOG published 23 articles about ovarian cancer.
A Sustained Commitment to Fund Cancer Research
When funding stagnates or does not keep pace with inflation,
progress in critical research programs is halted or slows
significantly. Inadequate funding for the NIH and the NCI means
smaller--trickle down--occurs for the lesser-known or less frequently
occurring--yet terribly devastating--diseases such as ovarian cancer.
From fiscal year 2005 to fiscal year 2006, NCI funds decreased by
only two percent, while the number of ovarian cancer research grants
decreased by 20 percent. From fiscal year 2006 to fiscal year 2008, the
NCI budget was flat, and the number of ovarian cancer research grants
dropped 15 percent in the first year, and look to drop even more
significantly for fiscal year 2008.
To ensure adequate funding for all types of cancer, particularly
those most deadly and least understood, the Alliance joins the cancer
community in asking for a 6.5 percent increase for NIH and a 9.5
percent increase for NCI in fiscal year 2009.

SUMMARY

The Alliance maintains a long-standing commitment to work with
Congress, the Administration, and other policy makers and stakeholders
to improve the survival rate for women with ovarian cancer through
education, public policy, research and communication. Please know we
appreciate and understand that our nation faces many challenges and
Congress has limited resources to allocate; however, we are concerned
that without increased funding to bolster and expand ovarian cancer
education, awareness and research efforts, the nation will continue to
see growing numbers of women losing their battle with this terrible
disease.
On behalf of the entire ovarian cancer community--patients, family
members, clinicians and researchers--we thank you for your leadership
and support of federal programs that seek to reduce and prevent
suffering from ovarian cancer. Thank you in advance for your support of
$10 million in fiscal year 2009 funding for the CDC' Ovarian Cancer
Control Initiative and $10 million in fiscal year 2009 funding for
Johanna?s Law as well as your continued support of the SPORES program,
a 9.5 percent increase for NCI.
______

Prepared Statement of the Pancreatic Cancer Action Network

Mr. Chairman and members of the subcommittee: My name is Dr. Randy
Pausch. I am submitting testimony on behalf of the Pancreatic Cancer
Action Network and the thousands of Americans who have suffered from
this deadly disease.
In the way of background, I am Professor of Computer Science,
Human-Computer Interaction and Design at Carnegie Mellon University. I
had the good fortune of being named an NSF Presidential Young
Investigator, spending time at Walt Disney's Imagineering and
Electronic Arts, and co-founding the University's Entertainment
Technology Center. That may sound like a boring resume to you, but to a
geek like me, it's nirvana!
My father always advised me that if there is an elephant in the
room, introduce it. In September 2006, at the age of 45, I was
diagnosed with pancreatic cancer. I have some of the best doctors in
the world, but even they couldn't stop what was happening. Last year I
was told that my cancer had spread to my liver and spleen and that I
had 3 to 6 months to live. According to the statistics, 75 percent of
people diagnosed with pancreatic cancer die within the first year. So,
for me, being alive today is a milestone of sorts.
In the academic world it's become a common practice to invite
professors to deliver a ``last lecture,'' the premise being, what
knowledge would you impart to your students if you were delivering your
last lecture? Last September I had the opportunity to deliver my last
lecture at Carnegie Mellon. I talked about fulfilling childhood dreams,
and how we go about enabling the dreams of others. I thought perhaps my
testimony today could be a different take on those subjects.
For me and the 37,680 Americans who will be diagnosed with
pancreatic cancer this year, the dream is to find a cure or a way to
prevent what is the most lethal form of cancer. I say that because only
5 percent survive more than 5 years and the survival rate beyond that
is even lower. Pancreatic cancer is truly the deadliest cancer and yet
it is also the fourth leading cause of cancer related death. It seems
strange to be talking about rankings in this context, but pancreatic
cancer kills more people than prostate cancer and is just behind breast
cancer. In other words, this is not a ``little'' disease. It just
hasn't received a lot of attention to date.
The money this subcommittee has invested in cancer research over
the years has paid off in so many wonderful ways. The result has been
that the death rates associated with many types of cancers have
declined.
Not so with pancreatic cancer. In fact, the chances of surviving
this unmerciful disease are about the same as they were over 30 years
ago. Pancreatic cancer is where breast cancer was in the 1930's--little
understanding of the causes, no early detection, few effective
treatments and single digit survival rates. It is not only the fourth
leading cause of cancer death in the United States, but the number of
people diagnosed with pancreatic cancer and the number of deaths it
causes are going up--not down and have been even in the years when
overall cancer deaths have decreased.
So how do we enable the dream of living without the threat of
pancreatic cancer? How do we reverse the trend that will cause more
Americans to suffer pain and anguish, and more families to bear the
physical, emotional and financial burden of pancreatic cancer?
I am sure you can guess that the easy answer is, more money. The
more accurate answer is, more money that is better targeted.
While I realize that Congress is reluctant to direct how NIH
allocates research dollars, I would argue that something is wrong when
one of the deadliest types of cancer receives so little attention. You
may be surprised to learn that of the $4.8 billion this Subcommittee
appropriated for the National Cancer Institute, less than two percent--
or about $74 million--was spent on pancreatic cancer research. In fact,
pancreatic cancer research receives the least amount of NCI funding of
any of the top cancer killers. Please see the attached chart of NCI
funding for the top five cancer killers and the survival rates for the
same cancers. There is no question that funding levels and survival
rates are linked.
Of the more than 5,000 research grants awarded by the National
Cancer Institute in 2006, only 134 grants, approximately 3 percent,
were focused primarily on pancreatic cancer research.
And of the 160 cancer research centers NCI supports, only three
specialize in pancreatic cancer research.
We have heard repeatedly from the brightest scientific minds in the
country that pancreatic cancer research is an area that holds great
promise--the ideas are there, we just need the funds to pursue them.
I believe that Congress and NIH have a leadership role to play--as
you did in the 1970s, when the war on cancer was declared; in the
1980s, when this subcommittee provided the first appropriation to
combat HIV/AIDS; at the start of this decade, with the launch of a
bioterrorism research initiative and as you have done many times over
the years for other cancers.
Ironically, the National Cancer Institute developed a pancreatic
cancer research plan back in 2001. The problem is it was never fully
implemented. In fact, only 5 of the plan's 39 recommendations were
acted upon.
Last year, the Pancreatic Cancer Action Network gathered together
the leading experts on this disease, many of whom crafted that original
plan, and asked them to update it. What they came up with is a detailed
plan called The National Plan to Advance Pancreatic Cancer Research,
that:
--calls for a coordinated research initiative to support very
specific research objectives, including finding more precise
diagnostic methods and more innovative clinical trials testing;
--supports more pancreatic cancer research centers to serve as a
staging area for highly targeted research on pancreatic cancer;
--takes the steps necessary to draw more scientists into this
particular field of research; and
--promotes greater awareness among physicians and the general public.
The initial cost of implementing this plan would be $170 million.
While I recognize that that seems like a large number, please remember
what I said about pancreatic cancer research being stuck in the 1930s.
We need to bring it into the 21st Century.
The Pancreatic Cancer Action Network has supplied the subcommittee
with a copy of this plan. Many of you may have learned about it from
one of the 220 advocates who were here last month for Pancreatic Cancer
Action Network's Advocacy Day. I urge you to support the implementation
and funding of the National Plan.
I should also point out that we strongly support increasing the
overall budget for the NCI. Therefore, we are also joining our partners
in the One Voice Against Cancer (OVAC) Coalition in calling for a 9.5
percent increase over fiscal year 2008 levels.
My mother always liked to refer to me as her son, the doctor, but
not the type of doctor who helps people. I hope that by being here
today, I will help people by shining a spotlight on this disease and
urging you to provide necessary research funding for this disease.
I will be glad to answer any questions you have, and thank you for
the opportunity to present this testimony.
______

Prepared Statement of the Population Association of America/Association
of Population Centers

INTRODUCTION

Thank you, Mr. Chairman Harkin, Mr. ranking member Specter, and
other distinguished members of the subcommittee, for this opportunity
to express support for the National Institutes of Health (NIH), the
National Center for Health Statistics (NCHS), and Bureau of Labor
Statistics (BLS).

BACKGROUND ON THE PAA/APC AND DEMOGRAPHIC RESEARCH

The Population Association of America (PAA) is a scientific
organization comprised of over 3,000 population research professionals,
including demographers, sociologists, statisticians, and economists.
The Association of Population Centers (APC) is a similar organization
comprised of over 30 universities and research groups that foster
collaborative demographic research and data sharing, translate basic
population research for policy makers, and provide educational and
training opportunities in population studies. Over 30 population
research centers are located nationwide, including the University of
Wisconsin-Madison, State University New York Albany, Brown University,
Ohio State University, University of California at Los Angeles,
University of North Carolina-Chapel Hill, and Pennsylvania State
University.
Demography is the study of populations and how or why they change.
Demographers, as well as other population researchers, collect and
analyze data on trends in births, deaths, and disabilities as well as
racial, ethnic, and socioeconomic changes in populations. Major policy
issues population researchers are studying include the demographic
causes and consequences of population aging, trends in fertility,
marriage, and divorce and their effects on the health and well being of
children, and immigration and migration and how changes in these
patterns affect the ethnic and cultural diversity of our population and
the Nation's health and environment.
The NIH mission is to support research that will improve the health
of our population. The health of our population is fundamentally
intertwined with the demography of our population. Recognizing the
connection between health and demography, the NIH supports extramural
population research programs primarily through the National Institute
on Aging (NIA) and the Eunice Kennedy Shriver National Institute of
Child Health and Human Development (NICHD).

NATIONAL INSTITUTE ON AGING

According to the Census Bureau, by 2029, all of the baby boomers
(those born between 1946 and 1964) will be age 65 years and over. As a
result, the population age 65-74 years will increase from 6 percent to
10 percent of the total population between 2005 and 2030. This
substantial growth in the older population is driving policymakers to
consider dramatic changes in Federal entitlement programs, such as
Medicare and Social Security, and other budgetary changes that could
affect programs serving the elderly. To inform this debate,
policymakers need objective, reliable data about the antecedents and
impact of changing social, demographic, economic, and health
characteristics of the older population. The NIA Behavioral and Social
Research (BSR) program is the primary source of Federal support for
research on these topics.
In addition to supporting an impressive research portfolio, that
includes the prestigious Centers of Demography of Aging Program, the
NIA BSR program also supports several large, accessible data surveys.
One of these surveys, the Health and Retirement Study (HRS), has become
one of the seminal sources of information to assess the health and
socioeconomic status of older people in the United States. The HRS, now
entering its 16th year, has tracked 27,000 people, and has provided
data on a number of issues, including the role families play in the
provision of resources to needy elderly and the economic and health
consequences of a spouse's death. The Social Security Administration
recognizes and funds the HRS as one of its ``Research Partners'' and
posts the study on its home page to improve its availability to the
public and policymakers. HRS is particularly valuable because its
longitudinal design allows researchers: (1) the ability to immediately
study the impact of important policy changes such as Medicare Part D;
and (2) the opportunity to gain insight into future health-related
policy issues that may be on the horizon, such as recent HRS data
indicating an increase in pre-retirees self-reported rates of
disability. Next year, the HRS will begin collecting DNA, enhancing the
value of this survey as an important source of biosocial data.
With additional support in fiscal year 2008, the NIA BSR program
could fully fund its existing centers and support its ongoing surveys
without enacting draconian cost cutting measures, such as cutting
sample size. Additional support would allow NIA to expand the centers'
role in understanding the domestic macroeconomic as well as the global
competitiveness impact of population aging. NIA could also use
additional resources to support individual investigator awards by
precluding an 18 percent cut in competing awards, improving its funding
payline, and sustaining training and research opportunities for new
investigators.

NATIONAL INSTITUTE ON CHILD HEALTH AND HUMAN DEVELOPMENT

Since its establishment in 1968, the NICHD Center for Population
Research has supported research on population processes and change.
Today, this research is housed in the Center's Demographic and
Behavioral Sciences Branch (DBSB). The Branch encompasses research in
four broad areas: family and fertility, mortality and health, migration
and population distribution, and population composition. In addition to
funding research projects in these areas, DBSB also supports a highly
regarded population research infrastructure program and a number of
large database studies, including the Fragile Families and Child Well
Being Study and National Longitudinal Study of Adolescent Health.
NIH-funded demographic research has consistently provided critical
scientific knowledge on issues of greatest consequence for American
families: work-family conflicts; marriage and childbearing; childcare;
and family and household behavior. However, in the realm of public
health, demographic research is having an even larger impact,
particularly on issues regarding adolescent and minority health.
Understanding the role of marriage and stable families in the health
and development of children is another major focus of the NICHD DBSB.
Consistently, research has shown children raised in stable family
environments have positive health and development outcomes.
Policymakers and community programs can use these findings to support
unstable families and improve the health and well being of children.
In 2007, the DBSB issued a revised five-year strategic plan, Future
Directions for the DBSB. With the help of its expert panel and with
input from others inside and outside of the agency, the Branch
identified three important research areas--family formation; causes and
consequences for population health; and the effects of migration--for
focus during the 2007 through 2011 period. In addition to these areas
of emphasis, the Branch will continue to develop and support other
areas within its portfolio, including research on HIV/AIDS; unintended
pregnancy and infertility; race and ethnicity; and population and
environment. Although the field is enthusiastic about the opportunities
the revised strategic research plan presents, we recognize the
Institute needs consistent, sufficient funding to realize its
potential.
With additional support in fiscal year 2008, NICHD could restore
full funding to its large-scale surveys, which serve as a resource for
researchers nationwide. Furthermore, the Institute could apply
additional resources toward improving its funding payline. Additional
support could be used to preclude cuts of 17 percent to 22 percent in
applications approved for funding and to support and stabilize
essential training and career development programs necessary to prepare
the next generation of researchers.

NATIONAL CENTER FOR HEALTH STATISTICS

Located within the Centers for Disease Control (CDC), the National
Center for Health Statistics (NCHS) is the Nation's principal health
statistics agency, providing data on the health of the U.S. population
and backing essential data collection activities. Most notably, NCHS
funds and manages the National Vital Statistics System, which contracts
with the States to collect birth and death certificate information.
NCHS also funds a number of complex large surveys to help policy
makers, public health officials, and researchers understand the
population's health, influences on health, and health outcomes. These
surveys include the National Health and Nutrition Examination Survey,
National Health Interview Survey, and National Survey of Family Growth.
Together, NCHS programs provide credible data necessary to answer basic
questions about the State of our Nation's health.
The President's fiscal year 2009 budget requests $125 million in
program funds for NCHS. This recommendation represents an increase of
$11 million over fiscal year 2008. Although it may sound generous, this
increase is absolutely essential for stabilizing the agency and its key
operations. Before Congress increased the agency's budget last year by
approximately $4 million, NCHS had lost $13 million in purchasing power
since fiscal year 2005 due to years of flat funding and inflation.
These shortfalls forced the elimination of some data collection and
quality control efforts, threatened the collection of vital statistics,
stymied the adoption of electronic systems, and limited the agency's
ability to modernize surveys to reflect changes in demography,
geography, and changes in health delivery.
If Congress fails to, at a minimum, provide the Administration's
fiscal year 2009 request, NCHS will be forced to eliminate over-
sampling of minority populations in its National Health and Nutrition
Examination Survey, which will compromise our understanding of health
disparities at a time when our society is becoming increasingly
diverse. The agency also needs this funding increase to collect vital
statistics from States for the remainder of the calendar year. Without
an additional $3 million, which is included in the President's request,
the United States is at risk of becoming the first industrialized
Nation unable to continuously collect birth, death, and other vital
health information.

BUREAU OF LABOR STATISTICS

The Bureau of Labor Statistics (BLS) produces and disseminates
valuable economic data used by our members to analyze trends in areas
such as unemployment, income, health insurance coverage, and spending.
In its fiscal year 2009 submission, the Administration proposed the
elimination of an important survey BLS began in 2003, the American Time
Use Survey (ATUS).
The ATUS provides the only available information on how Americans
use their time. ATUS provides essential information on time use
activities, including time spent caring for children, cleaning the
house, working for pay, and caring for sick adults. Understanding how
the population spends its time, outside of traditional work, is
necessary for anyone who wants to understand the changing lives of
American families, to monitor the well-being of the American
population, to measure national output, productivity and other outcomes
that are essential to forming sound economic policies and to making
informed social policy decisions.
Although the ATUS is a relatively new survey, it has already proven
to be an invaluable component of the statistical infrastructure, giving
us unique insights into American society. Moreover, the power of the
ATUS has grown as more years of data have accumulated. Every other
advanced nation in the world collects time use data. If the ATUS is
eliminated, American businesses, families, policymakers and researchers
will lose out on critical information that can improve the quality of
our lives.
The BLS needs an additional $6 million in fiscal year 2009 budget
to collect ATUS data from the full sample originally planned for the
survey and to preserve its other ongoing survey operations with a full
sample--most notably, the Current Population Survey.

SUMMARY OF FISCAL YEAR 2009 RECOMMENDATIONS

NIH is facing the prospect of another decrease in fiscal year 2009
and another year of funding below the level of inflation. PAA and APC
join the Ad Hoc Group for Medical Research in supporting an fiscal year
2009 appropriation of $31.1 billion, an increase of 6.6 percent over
the fiscal year 2008 appropriation, for the NIH. For population
research, this increased support is necessary to ensure the best
research projects, including new and innovative projects, are being
awarded, surveys and databases are supported, and training programs are
stabilized. In addition, we urge the Subcommittee to include language
in the fiscal year 2009 bill allowing NIH to continue the National
Children's Study (NCS) and to appropriate $192 million for NCS in
fiscal year 2009 through the NIH Office of the Director.
PAA and APC, as members of the Friends of NCHS, support a fiscal
year 2009 appropriation of $125 million, an $11 million increase over
the fiscal year 2008 appropriation, for the NCHS. This funding is
needed to maintain the Nation's vital statistics system and to sustain
and update the agency's major health survey operations.
We also respectively ask the subcommittee to restore funding for
the American Time Use Survey by allocating an additional $6 million for
the Bureau of Labor Statistics and by reversing the administration's
proposal to end this essential data collection effort.
Thank you for considering our requests and for supporting Federal
programs that benefit the field of demographic research.
______

Prepared Statement of the Railroad Retirement Board

Mr. Chairman and members of the committee: We are pleased to
present the following information to support the Railroad Retirement
Board's (RRB) fiscal year 2009 budget request.
The RRB administers comprehensive retirement/survivor and
unemployment/sickness insurance benefit programs for railroad workers
and their families under the Railroad Retirement and Railroad
Unemployment Insurance Acts. The RRB also has administrative
responsibilities under the Social Security Act for certain benefit
payments and Medicare coverage for railroad workers. During fiscal year
2007, the RRB paid $9.8 billion in retirement/survivor benefits and
vested dual benefits to about 616,000 beneficiaries. We also paid $74.6
million in net unemployment/sickness insurance benefits to about 29,000
claimants.

PRESIDENT'S PROPOSED FUNDING FOR AGENCY ADMINISTRATION

The President's proposed budget would provide $105,463,000 for
agency operations in fiscal year 2009, which is about $4 million less
than we originally requested. By comparison, the Consolidated
Appropriations Act, 2008 (Public Law 110-161) provided about $101.9
million for RRB operations in 2008, which includes a rescission of $1.8
million.
At the President's proposed level of funding, the RRB would be able
to maintain a staffing level of 910 full-time equivalent staff years
(FTEs) in 2009. This represents a reduction of eight FTEs from our
current funded level, and continues a downward trend which has reduced
the RRB's staffing by nearly half since 1993. This downward trend
adversely impacts our succession planning efforts as it restricts our
ability to replace employees who leave the agency.
The President's proposed budget would provide $2,370,000 for
information technology (IT) investments. Nearly $1.5 million of this
amount will be needed for network operations, emergency equipment
replacement, IT tools and task order services. The remaining funds,
totaling about $870,000, would be available for information security
improvements, system modernization, and E-Government initiatives. At
this budget level we would delay replacement of desktop computing
equipment in accordance with the agency's life cycle replacement
schedules for the second year in a row. In addition, we would delay
development of electronic personnel files, which is part of the
Enterprise Human Resources Initiative.

AGENCY STAFFING

Like many agencies, the RRB has an aging workforce. Current
estimates show that about one in three RRB employees will be eligible
for retirement by fiscal year 2009. To prepare for the coming
transition in our workforce, we have undertaken major initiatives
related to training and succession planning.
In connection with these initiatives, the agency is looking at a
variety of critical positions to identify any gaps in particular
competencies or skills that exist within the workforce. In some cases,
we have provided supplemental developmental and training opportunities
to current employees so that the activities associated with these
positions will continue effectively as more experienced employees leave
the agency. We have also continued hiring to fill essential positions
as funding levels permit. In fiscal year 2007, for the first time in
many years, the RRB was able to hire entry-level employees for two
claims examiner training classes. Given the expected increase in the
agency's attrition rate, new employees such as these will be key to the
RRB's long-term success in continuing to provide outstanding service to
our customers.
Partially in response to recommendations and suggestions made by
the Office of Personnel Management, the RRB is also in the process of
developing more formalized human capital management and succession
planning documents. We have created an internal succession planning
task force, chaired by the Director of Human Resources, to provide
coordination and consolidation of existing plans, as well as identify
new initiatives to address this important area.

FIELD SERVICE MODERNIZATION

During fiscal year 2007, we restructured the RRB's field service
operations along the lines of a hub-and-satellite configuration, which
will enable the agency to maintain customer service by utilizing new
technologies more effectively. The hub-and-satellite configuration will
support telephone and face-to-face service for our customers, and will
allow agency management to more effectively balance and share workloads
among the offices in each network. By the end of fiscal year 2008, we
will close the RRB's three regional offices and consolidate them into
corresponding hub offices.
The field restructuring plan also calls for the possibility of
using ``virtual offices'' and/or ``co-located offices.'' In 2007, the
agency began pilot-testing an arrangement to provide customer service
through an off-site claims representative. The pilot, which is
continuing, is designed to serve as a test environment to determine the
kinds of procedures and technologies that would be needed to establish
virtual offices in the future.
Work is continuing to build, test and implement technology
infrastructure improvements for the field service. The completion of
this infrastructure is contingent upon sufficient funding being made
available. Ongoing initiatives include, among other things:
--Toll-Free Telephone Service.--Nationwide toll-free service is a key
component of our field technology plans. In fiscal year 2007,
we contracted with Qwest Government Services, Inc. (under the
General Services Administration's Networx Universal) for
development of the RRB's toll-free service. We plan to begin
offering the service in 12 pilot offices between April and June
2008, as part of the initial proof-of-concept phase, and to
complete overall implementation by December 31, 2008.
--Expansion of Interactive Voice Response (IVR) Service.--After the
implementation of toll-free telephone service, we also plan to
expand the range of services that can be accessed through the
IVR system. The IVR system will continue to be accessible to
callers through the 800 number, but will also be substantially
modified in the future to allow for more interactive
transactions and better security. Initially, it will continue
to provide all current services, plus an option for the caller
to be able to speak to a field service representative at any
time during the call.
--Additional Internet Self-Service Options.--By fiscal year 2009, we
expect to implement a system that will enable railroad
employees to file sickness insurance claims through the
Internet. We also plan to provide expanded Internet reporting
functions for rail employers.
--Document Imaging.--In fiscal year 2007, we conducted a pilot
program involving the expansion of our existing document
imaging system to four pilot field offices. During fiscal year
2008, we are expanding the use of document imaging to 25
additional offices. The remaining offices are scheduled for
implementation during fiscal year 2009.
In March 2007, we also implemented an on-line system to allow our
employees to track and record direct customer contacts. This system
enhances our ability to handle telephone calls in a more effective
manner, regardless of which field office answers the call. We are
confident that the strategic use of technology in our
telecommunications and other processes is the foundation needed for the
most effective and efficient use of agency resources, allowing us to
continue to provide the excellent service that our customers have come
to expect.
The President's proposed budget includes $72 million to fund the
continuing phase-out of vested dual benefits, plus a 2 percent
contingency reserve, $1,440,000, which ``shall be available
proportional to the amount by which the product of recipients and the
average benefit received exceeds the amount available for payment of
vested dual benefits.''
In addition to the requests noted above, the President's proposed
budget includes $150,000 for interest related to uncashed railroad
retirement checks.

FINANCIAL STATUS OF THE TRUST FUNDS

Railroad Retirement Accounts.--The RRB continues to coordinate its
activities with the National Railroad Retirement Investment Trust
(NRRIT), which was established by the Railroad Retirement and
Survivors' Improvement Act of 2001 to manage and invest railroad
retirement assets. Through fiscal year 2007, the RRB transferred about
$21.3 billion to the NRRIT for this purpose. During the same period,
the NRRIT transferred approximately $5.0 billion to the Railroad
Retirement Account for payment of retirement and survivor benefits.
During fiscal year 2007, these transfers totaled $1.391 billion. As of
September 30, 2007, the market value of NRRIT-managed railroad
retirement assets was approximately $32.7 billion.
In June 2007, we released the annual report on the railroad
retirement system required by Section 22 of the Railroad Retirement Act
of 1974, and Section 502 of the Railroad Retirement Solvency Act of
1983. The report, which reflects changes in benefit and financing
provisions under the Railroad Retirement and Survivors' Improvement Act
of 2001, addresses the 25-year period 2007-2031 and contains generally
favorable information concerning railroad retirement financing. The
report includes projections of the status of the retirement trust funds
under three employment assumptions. These indicate that, barring a
sudden, unanticipated, large decrease in railroad employment or
substantial investment losses, the railroad retirement system will
experience no cash flow problems throughout the projection period.
Railroad Unemployment Insurance Account.--The equity balance of the
Railroad Unemployment Insurance Account at the end of fiscal year 2007
was $100.7 million, an increase of $3.4 million from the previous year.
The RRB's latest annual report on the financial status of the railroad
unemployment insurance system was issued in June 2007. The report
indicated that even as maximum daily benefit rates rise 49 percent
(from $57 to $85) from 2006 to 2017, experience-based contribution
rates maintain solvency. The average employer contribution rate remains
well below the maximum throughout the projection period, but a 1.5
percent surcharge, which is now in effect, is expected for calendar
year 2009, and is likely for calendar year 2010. The report did not
recommend any financing changes.
In conclusion, we want to stress the RRB's continuing commitment to
improving our operations and providing quality service to our
beneficiaries. Thank you for your consideration of our budget request.
We will be happy to provide further information in response to any
questions you may have.
______

Prepared Statement of the Railroad Retirement Board

Mr. Chairman and members of the subcommittee: My name is Martin J.
Dickman and I am the Inspector General for the Railroad Retirement
Board. I would like to thank you, Mr. Chairman, and the members of the
committee for your continued support of the Office of Inspector
General.

BUDGET REQUEST AND BACKGROUND INFORMATION

I wish to describe our fiscal year 2009 appropriations request and
our planned activities. The Office of Inspector General (OIG)
respectfully requests funding in the amount of $7,806,000 to ensure the
continuation of its independent oversight of the Railroad Retirement
Board (RRB).
The agency's central mission is to pay accurate and timely
benefits. During fiscal year 2007, the RRB paid approximately $9.7
billion in retirement and survivor benefits to 600,000 beneficiaries.
RRB also paid $73 million in net unemployment and sickness insurance
benefits to almost 28,000 claimants during the benefit year ending July
30, 2007. The Railroad Medicare Part B carrier, Palmetto GBA, paid
approximately $897 million in medical insurance benefits for more than
496,000 beneficiaries.
During fiscal year 2009, the OIG will perform reviews of
significant policy issues and program operational areas. We will
coordinate our efforts with agency management to identify and eliminate
operational weaknesses. We will also continue our investigation of
allegations of fraud, waste and abuse, and refer cases for prosecution
and monetary recovery action.

NATIONAL RAILROAD RETIREMENT INVESTMENT TRUST

The OIG respectfully requests oversight authority to conduct audits
and investigations of the National Railroad Retirement Investment Trust
(NRRIT). The sole purpose of the NRRIT is to manage and invest railroad
retirement assets in a diversified investment portfolio in the same
manner as those of private sector retirement plans. The NRRIT is
responsible for the investment of approximately $32.7 billion in trust
funds used to support Railroad Retirement Act benefit programs. We
continue to express concerns about the RRB's passive relationship with
the NRRIT. Federal oversight of the NRRIT does not include performance
audits by an independent auditor such as the OIG, Government Accounting
Office or a public accountant. The NRRIT plays a critical role in the
financing and future solvency of the RRB program. If oversight
authority is granted, my office would work to ensure sufficient
reporting mechanisms are in place and that the NRRIT management is
fulfilling their fiduciary responsibilities. The program and its public
constituency would benefit from an OIG that is permitted to fulfill its
statutory role by extending its oversight responsibilities to the
NRRIT.

MANDATED REIMBURSEMENTS TO THE AGENCY

The OIG is currently required to reimburse the agency for office
space, equipment, communications, office supplies, maintenance and
other administrative services. We are the only Federal OIG that cannot
negotiate a service level agreement with its parent agency. The current
mandate has resulted in a burdensome accounting and reconciliation
process. Removal of the current language would permit a more efficient
and fair negotiation between the RRB and the OIG.

OFFICE OF AUDIT

The Office of Audit (OA) conducts financial, performance and
compliance audits to ensure the economy, efficiency and effectiveness
of RRB programs. The OA efforts are directed primarily to fulfilling
the financial audit and information security evaluation requirements
mandated by law. As resources permit, audit staff will undertake to
perform other audits, evaluations and monitoring activities that will
add value to agency operations.
The OA conducts the annual audit of the RRB's financial statements.
During fiscal year 2009, the OA will complete the audit of the agency's
fiscal year 2008 financial statements and begin the audit of the fiscal
year 2009 statements. The annual financial statement audit is conducted
using OA staff with technical assistance from actuarial specialists
under contract to the OIG. Audit staff will continue to work with
agency management to ensure that the necessary detailed, verifiable
financial information is available from the NRRIT. This effort includes
periodic stand-alone audits that support the office's overall financial
audit responsibility.
Audit staff will also conduct the annual evaluation of the RRB's
information security pursuant to the requirements of the Federal
Information Security Management Act of 2002. This annual effort
includes stand-alone audits of controls in various agency systems
conducted during the year as well as the additional evaluation work
required to respond to certain areas about which the Office of
Management and Budget requires more specific information. The related
area of privacy of sensitive and confidential information will remain a
concern.
OA will continue to monitor agency actions in response to audit
recommendations. As resources permit, the OA will work to identify
potentially at-risk areas of agency responsibility, perform risk
assessments and plan audits to disclose deficiencies in internal
control, compliance with applicable laws and regulations, and fraud
vulnerabilities in the benefit programs administered by the RRB.
The OA does not anticipate performance audits of the NRRIT because,
as we have previously stated, it is our understanding that the OIG does
not have a role in oversight of the NRRIT.

OFFICE OF INVESTIGATIONS

The Office of Investigations (OI) focuses its efforts on
identifying, investigating and presenting cases for prosecution,
throughout the United States, concerning fraud in RRB benefit programs.
OI conducts investigations relating to the fraudulent receipt of RRB
sickness, unemployment, disability or retirement benefits. OI also
investigates railroad employers and unions when there is an indication
that they have submitted false reports to the RRB. RRB Medicare
oversight authority was reinstated to the OIG on December 26, 2007.
This authority allows the OIG to investigate allegations of fraud,
waste and abuse in the RRB Medicare program. Investigative efforts can
result in criminal convictions, administrative sanctions, civil
penalties and the recovery of program benefit funds.
OI initiates cases based on information from a variety of sources.
The agency conducts computer matching of employment and earnings
information reported to State governments and RRB benefits paid.
Referrals are made to OI if a match is found. OI also receives
allegations of fraud through the OIG Hotline, contacts with State,
local, and Federal agencies, and information developed through audits
conducted by the OIG's Office of Audit.

OI'S INVESTIGATIVE RESULTS FOR FISCAL YEAR 2007
----------------------------------------------------------------------------------------------------------------
Civil Judgments Indictments/ Informations Convictions Recoveries/Collections
----------------------------------------------------------------------------------------------------------------
25.......................... 32 46 $4,655,049
----------------------------------------------------------------------------------------------------------------

OI anticipates an ongoing caseload of approximately 450
investigations in fiscal year 2009. During fiscal year 2007, OI opened
297 new cases and closed 295. At present, OI has cases open in 47
States, the District of Columbia and Canada with estimated fraud losses
totaling almost $11 million.
OI will continue to concentrate its resources on cases with the
highest fraud losses.
We anticipate that these cases will relate to the RRB's disability,
retirement and Medicare programs. These cases involve more complicated
schemes and result in the recovery of substantial funds. They also
require considerable time and resources such as travel by special
agents to conduct sophisticated investigative techniques such as
surveillance and witness interviews. These fraud investigations are
extremely document-intensive and involve sophisticated financial
analysis.
OI will also continue to investigate fraud violations of railroad
employees collecting unemployment or sickness insurance benefits while
working and receiving wages from an employer. OI will also investigate
retirement fraud which typically involves the theft and fraudulent
cashing of U.S. Treasury checks or the withdrawal of electronically
deposited RRB benefits. OI will also use the Department of Justice's
Affirmative Civil Enforcement Program to recover trust fund monies from
cases that do not meet U.S. Attorney's guidelines for criminal
prosecution.
OI will also investigate complaints involving administrative
irregularities and any alleged misconduct by agency employees.
In fiscal year 2009, OI will continue to coordinate its efforts
with agency program managers to address vulnerabilities in benefit
programs that allow fraudulent activity to occur and will recommend
changes to ensure program integrity. OI plans to continue proactive
projects to identify fraud matters that are not detected through the
agency's program policing mechanisms. Findings will be conveyed to
agency management through OIG systemic implication reports to alert
officials of operational weaknesses that may result in fraud against
RRB programs. OI will also continue to work with RRB program managers
to ensure the appropriate and timely referral of all fraud matters to
the OIG.

SUMMARY

In fiscal year 2009, the OIG will continue to focus resources on
reviewing RRB program operations and ensuring the integrity of agency
trust funds by aggressively pursuing individuals who engage in
activities to fraudulently receive RRB funds. OIG will continue to keep
the Subcommittee and other members of Congress informed of any agency
operational problems or deficiencies. OIG sincerely appreciates its
cooperative relationship with the agency and the ongoing assistance
extended to its staff during the performance of their audits and
investigations. Thank you for your consideration.
______

Prepared Statement of Reaching for the Stars. A Foundation of Hope for
Children With Cerebral Palsy

Mr. Chairman and Members of the Committee: Thank you for allowing
us to speak to you today on behalf of the more than 800,000 Americans
with Cerebral Palsy, and their families. We are Cynthia Gray and Anna
Marie Champion, mothers of children with cerebral palsy and Co-Founders
of ``Reaching for the Stars. A Foundation of Hope for Children With
Cerebral Palsy,'' the only national nonprofit pediatric cerebral palsy
foundation in the United States. And I am Dr. Janice Brunstrom, Medical
Advisor to ``Reaching for the Stars'' and pediatric neurologist.
Together with the thousands of parents across the country affiliated
with Reaching for the Stars we ask you to help us change the course of
the future for children, adolescents and adults with Cerebral Palsy
from one of uncertainty to one of hope.
With your help of $10 million to the CDC they will be able to
establish a national CP surveillance and epidemiological research
program that will provide crucial insights into this group of
disorders, yield improved treatments, help prevent secondary
complications and bolster additional research efforts so that we may
someday prevent and even cure Cerebral Palsy.

DR. JANICE BRUNSTROM

My expertise in Cerebral Palsy is both professional and personal. I
am a pediatric neurologist, an Assistant Professor of Neurology,
Pediatrics and Cell Biology and Director of the Pediatric Neurology
Cerebral Palsy Center at Washington University School of Medicine and
St. Louis Children's Hospital. Our CP Center enrolled its first patient
on June 1, 1998 and now helps an estimated 2,000 children from across
the United States and around the world to become more independent and
productive members of society and to participate fully in all aspects
of life. I am an NIH funded neuroscientist investigating mechanisms of
prenatal brain development. I am a clinical research scientist
developing and testing new treatment strategies for children with
Cerebral Palsy. I am a mother and I am a woman with Cerebral Palsy. My
Cerebral Palsy is due to complications associated with prematurity and
low birth weight. I was born 3 months prematurely (29 weeks gestation)
weighing about 3 pounds. Fourty-five years ago my parents were told I
would not survive. The experts also predicted I would never walk or
talk and that I would have mental retardation. Thankfully the experts
were wrong.
Unfortunately in the over four decades since my birth, treatments
for Cerebral Palsy have not progressed much at all. In fact, today,
there remains little consensus among medical professionals regarding
what causes CP or how best to treat it. There is no cure. Why does one
premature baby develop CP and another doesn't? Why do I see many cases
of twins (including genetically identical twins) where one has CP and
one doesn't? Or each twin has a different type of CP, despite being
exposed to the exact same conditions in utero? Why do more than 800,000
Americans have CP, and yet we don't know much more about what causes it
or how to prevent it than we did the day I was born?

ANNA MARIE CHAMPION AND CYNTHIA GRAY

Like Dr. Brunstrom, our young daughters, Cathryn and Morgan were
born prematurely and have Cerebral Palsy, but we aren't sure why
Cathryn has CP or why Morgan has CP but her twin, Katelyn does not.
After an exhausting roller-coaster of searching for answers and help
for our children and finding there was little research to go on, we
launched RFTS, Inc. in late 2004 to fill an important void that existed
nationally for a parent-led voice of children with cerebral palsy
focusing on advocacy, research and education. We now represent over
10,000 parents nationally across the United States.
There are several facts about CP that are worth noting.
Cerebral Palsy is one of the most common developmental disabilities
in the United States, affecting at least 800,000 children, adolescents
and adults in America. Cerebral Palsy is not a disease. It is not even
a simple or single disorder but rather a broad range of disorders that
disrupt a person's ability to move, sit, stand, walk, talk and use
their hands. The severity of the movement disorder and the type of
movement difficulties can vary greatly. Some patients have only mild
difficulties with balance, walking and fine motor skills while patients
at the other extreme are completely trapped in their own bodies,
fighting rigid limbs, and unable to speak or swallow.
Cerebral Palsy is increasing in this country. Despite the
introductions of modern prenatal testing, improved obstetric care, and
newborn intensive care technologies, the prevalence of Cerebral Palsy
is not declining, and appears to be increasing in many parts of the
country.
Although the national prevalence of Cerebral Palsy is not known,
recent estimates from CDC studies indicate that its prevalence is now
as high as 3.6 per 1,000 live births (and even higher in certain
segments of the population) equating to approximately 1 in 277 8 year-
old U.S. children--a marked increase over previous prevalence data. In
contrast, the prevalence of CP is significantly lower, and is
declining, in other countries such as Sweden (1.9 per 1,000) according
to the CDC.
And 75 percent of individuals with Cerebral Palsy also have one or
more additional developmental disabilities including epilepsy, mental
retardation, autism and visual impairments or blindness.
In over 80 percent of Cerebral Palsy cases is still unknown.
Cerebral Palsy results from an injury to the brain during development
and this injury can occur during pregnancy, around the time of birth or
anytime within the first 2 years of life. Contrary to popular belief,
only a small percentage of Cerebral Palsy is caused by birth
``asphyxia'' or a lack of oxygen at the time of birth.
There is currently no cure for Cerebral Palsy and in most cases, it
is not preventable. In over 50 years, treatments for Cerebral Palsy
have not progressed much at all. In fact, today, there remains little
consensus among medical professionals regarding what causes CP or how
best to treat it. With nearly 800,000 or more Americans with CP, we do
not know much more about the root causes or how to prevent them than we
did a half century ago.
As parents with young children we can tell you that living with
Cerebral Palsy is expensive. The economic impact of Cerebral Palsy is
enormous: Most children and adults with Cerebral Palsy need long-term
services or medical care. The average lifetime cost for just one person
with Cerebral Palsy is estimated to be well over $1,500,000 above and
beyond the cost of living for an average U.S. citizen--including doctor
visits, therapy, surgeries, prescriptions, hospital stays, durable
medical equipment, prescription drugs, orthotic equipment, education/
home/car modifications, and so on. A family's personal resources and
private insurance shoulder a portion of the burden when possible,
however federal and state governments in the form of Medicaid and other
social services currently absorb much of this cost.
It is estimated that the lifetime care and medical costs for all
Americans with CP who were born in 2000 alone will total over $13.5
billion. Investigating the cause of Cerebral Palsy will significantly
reduce the cost--to society, the government and to the hundreds of
thousands of families impacted across the United States--as ways to
prevent CP are uncovered.
Cerebral Palsy research is severely under-funded. Mr. Chairman, we
would be remiss if we did not thank you and the Subcommittee and your
staff for your leadership in supporting the CDC's efforts regarding
birth defects and developmental disabilities, which has included local
surveillance in Atlanta, Alabama and Wisconsin for Cerebral Palsy. We
also thank the committee for your ongoing support of the NIH,
especially research to understand brain development and injury.
We are here to ask for some additional help from this subcommittee.
There is currently no national surveillance for Cerebral Palsy.
However, we believe that by using existing infrastructure at the
Centers for Disease Control and Prevention (CDC) we can address the
causes and cures for CP.
Reaching for the Stars supports national CP surveillance and
epidemiological research in order to better understand how to prevent
and identify causes of damage to the developing brain. In late 2004, a
national group of committed parents and family members of children with
Cerebral Palsy, concerned that virtually no progress has been made to
treat or cure CP in the last 50 years, organized to form ``Reaching for
the Stars. A Foundation of Hope for Children with Cerebral Palsy''.
It has been our goal to increase advocacy about the issue of
Cerebral Palsy and raise national awareness. In fact, many national
organizations have written letters stating their support for the need
for the national CP surveillance and epidemiological research. The
United Cerebral Palsy Education and Research Foundation, The Child
Neurology Society and the American Academy of Cerebral Palsy and
Developmental Medicine all support our efforts.
That is why today we ask Congress to allocate $10 million in
Federal funding for the Centers for Disease Control and Prevention to
conduct epidemiology research and surveillance for Cerebral Palsy
nationwide. We believe a cure can be found for Cerebral Palsy by
understanding the risk factors for CP, what causes CP, at-risk ethnic
groups and why different clusters of prevalence and types of CP in
different parts of the country exist.
We want a cure for Cerebral Palsy. The only way this will happen is
to better understand the risk factors for CP, what causes CP, if
certain ethnic groups are more susceptible and why there are different
clusters of prevalence and types of CP in different parts of the
country and world. The only way to begin to answer these questions is
through national CDC surveillance.
Basic national surveillance and epidemiological research by the CDC
will bolster basic science research efforts through the NIH, and assist
scientists and the medical community to develop more effective
strategies for the prevention and treatment of CP--much like the
remarkable progress that has been made with Autism, Spina Bifida,
Epilepsy and Cystic Fibrosis.
Cerebral Palsy is a complex problem leaving many feeling
overwhelmed and hopeless. There is so much that needs to be done and so
many children that need help. But it doesn't need to be hopeless.
Children with CP are learning to dream big dreams for their future
and some aspire to become doctors, teachers, parents and even
Congressional leaders. Physicians treating children with CP will tell
you that the first step in helping them is to change their perception
about themselves and to teach them to stop listening to ``can't and
``never'' and to start saying ``I'll try.''
We believe we can change the future for these children if we all
work together and do our part. We believe we can cure these disorders
someday.
On behalf of the over 800,000 impacted children and families across
the country, we are asking for your support to ensure the CDC
establishes a national Cerebral Palsy Surveillance Program to change
the future for children and adults with Cerebral Palsy.
Mr. Chairman and members of the subcommittee, we thank you so very
much for the opportunity to speak to you today and for your time and
attention to this urgent matter.
______

Prepared Statement of the Refugee Council USA

Chairman Harkin, ranking member Specter, and the members of the
subcommittee: On behalf of Refugee Council USA (RCUSA), a coalition of
23 non-governmental organizations committed to refugee protection,
assistance, and resettlement, I am pleased to submit this statement
regarding fiscal year 2009 funding needs for the Department of Health
and Human Services' Office of Refugee Resettlement (ORR). ORR, in
funding the domestic assistance program for refugees once they have
been resettled through the State Department's reception and placement
program, is indispensable in providing the United States a viable and
vital resettlement program.
RCUSA recommends an fiscal year 2009 appropriation of at least $983
million for ORR in order to resettle a recommended 100,000 refugees and
help address ORR's ever-expanding mandate. In addition to providing
services to resettled refugees, ORR will also assist Iraqi special
immigrants who helped the United States during the conflict in Iraq
(approximately 11,250 individuals), Cuban/Haitian entrants
(approximately 20,000 people), and persons granted asylum in the United
States (approximately 25,000). Accordingly, the total number of
individuals being served by this amount would be 156,250.
If appropriated, these funds would also address necessary increases
in resettlement services and programs for survivors of torture and
human trafficking. RCUSA's recommendation for ORR would allow $20
million for human trafficking programs and $20 million for programs
under the Torture Victims Relief Act. We also understand that ORR's
responsibility for unaccompanied alien children will require at least
$150 million in fiscal year 2009.
Refugee Council USA recommends a total of $983 million for refugee
resettlement services which have traditionally included the below line
items.

A. RESETTLEMENT SERVICES

RCUSA recommends an allocation of $793 million for ORR's
resettlement services for fiscal year 2009. A significant portion of
this funding is necessitated by Congress' decision to increase the
admission of special immigrants from Iraq and to provide refugee-like
services to them.\1\
---------------------------------------------------------------------------
\1\ In 2007, Congress provided for the admission of up to 5,000
special immigrants from Iraq who helped the United States during the
conflict there. RCUSA estimates that the cost of providing resettlement
services to these special immigrants will be $68 million in fiscal year
2009. According to the Department of State's Bureau of Population,
Refugees, and Migration, the average family size for each special
immigrant is expected to be between 2 and 2.5 persons. Thus, the $68
million estimate is derived by multiplying the number of Iraqis
expected to be admitted (11,250 persons) by our estimated $6,070 per-
capita cost (based on ORR's fiscal year 2006 budget figures) for
resettling each special immigrant. This $68 million has been accounted
for in all of the budget categories which will serve these special
immigrants (line items A1-4).
---------------------------------------------------------------------------
ORR resettlement services include the following four line items:
1. Transitional and Medical Services (TAMS).--ORR reimburses States
for transitional cash and medical assistance to refugees for up to 8
months after their arrival in the United States. To be eligible for
such assistance, refugees must participate in employment services aimed
at ensuring self-sufficiency in the shortest amount of time possible.
RCUSA recommends an allocation of $500 million for ORR's Transitional
and Medical Services for fiscal year 2009.
(a) Early Employment and Self Sufficiency: ORR utilizes a program,
known as the Matching Grant Program, which matches federal dollars with
private sector contributions of cash, goods, and volunteers. Together,
these funds help newly arriving refugees become self-sufficient without
entering the welfare system. This Match Grant program provides short-
term cash assistance, intensive job development, employment services,
and case management, and was nominated last year by ORR as a flagship
program and a model for alternatives to welfare aimed at early self
sufficiency through employment. This program regularly leverages $1 of
private resources for every $2 of Federal funding for refugee self
sufficiency, and, unlike other Federal programs, serves trafficking
victims, asylum seekers, and Cuban/Haitian entrants in addition to
refugees. In order to serve 75,000 refugees, Iraqi special immigrants,
entrants and persons granted asylum at a cost of $2200 per refugee,
RCUSA recommends an allocation of $165 million for the Matching Grant
program for fiscal year 2009.
(b) Unaccompanied Refugee Minor (URM) Program: ORR provides funding
for specialized foster care for unaccompanied refugee minors. This is a
hallmark of the U.S. resettlement program and an internationally
recognized model of good practice with unaccompanied refugee children.
RCUSA recommends allocating $10 million for this program in fiscal year
2009.
(c) Refugee Social Services and Special Needs Program (RSSP):
Refugee Cash and Medical Assistance; Other: RSSP funds are allocated to
States, which design their own refugee service delivery system
emphasizing job training and placement, English language acquisition,
and citizenship services. The Cash and Medical Assistance (CMA) Program
provides reimbursement to States and alternative refugee assistance
programs for services provided to refugees, as well as associated
administrative costs. Refugees determined ineligible for Temporary
Assistance for Needy Families (TANF) and Medicaid are may be eligible
for RCA and RMA for up to 8 months from the date of arrival in the
United States, date of final grant of asylum for asylees, and date of
certification for trafficking victims. CMA also reimburses states for
medical screening costs through local public health clinics. RCUSA
recommends an allocation of $325 million for these assistance programs
for fiscal year 2009.
2. Targeted Assistance Grants (TAG).--These grants provide services
to refugees in counties where, because of factors such as high refugee
concentrations, additional resources are needed. Targeted Assistance
funds must be used to assist refugee families in achieving economic
independence. RCUSA recommends an allocation of $70 million for these
assistance programs for fiscal year 2009.
3. Preventative Health.--ORR ensures outreach and access for newly
arrived refugees to health screenings. The cost of the actual refugee
health screening is billed either to Medicaid or Refugee Medical
Assistance (as outlined above), depending on eligibility and time of
screening. In some areas, interpretation, follow-up, treatment, and
informational services are provided instead through the preventive
health funds. RCUSA recommends an allocation of $7 million for
preventative health programs in fiscal year 2009.
4. Social Services (discretionary).--This line item funds
discretionary programs such as services to refugees with special needs;
the unanticipated arrivals program; the ``preferred communities''
program; and capacity development programs for refugee Mutual
Assistance Associations. RCUSA recommends an allocation of $216 million
for social services in fiscal year 2009.

B. SERVICES FOR UNACCOMPANIED ALIEN CHILDREN

The Homeland Security Act of 2002 (Public Law 107-296) transferred
from the Immigration and Naturalization Service (INS) to ORR the
responsibility for coordinating and implementing the care and placement
of unaccompanied alien children. ORR ensures a safe and appropriate
environment for these children and helps reunite children with
guardians or sponsors when appropriate. In fiscal year 2007, ORR
provided services to approximately 9,000 children, compared to about
7,000 in the previous year. More funding is needed in order to ensure
quality custodial care and services even as the number of children
served has risen; to increase the use of smaller, child-centered
custodial settings that are more appropriate for children; and to
ensure sufficient home studies and suitability assessments are
performed. Of these funds, $5 million are needed to expand ORR's pro
bono legal services pilot that will sunset this year. RCUSA recommends
an allocation of $150 million for services for Unaccompanied Alien
Children in fiscal year 2009.

C. TORTURE VICTIMS

ORR is responsible for certain services to victims of torture.
Currently, ORR is in the 2nd year of a 3 year cycle with 20 grantees
and 2 technical assistance programs. Funding for torture rehabilitation
has remained static for several years. The result has been a demand for
services that far exceeds resources, and several programs have closed
or drastically scaled back services to survivors. All these programs
worked in areas with a significant refugee population. In addition, a
number of sources have indicated that the percentage of torture victims
within the Iraqi refugee population will be considerably higher than
that of other recent refugee flows.\2\ For all of these reasons, RCUSA
recommends an allocation of $20 million for services to victims of
torture in fiscal year 2009.
---------------------------------------------------------------------------
\2\ For more information, see UNHCR's recent report on the
incidence of severe trauma among Iraqi refugees in Syria: http://
www.unhcr.org/news/NEWS/479616762.html.
---------------------------------------------------------------------------
D. TRAFFICKING VICTIMS

ORR has a mandate to serve victims of trafficking--men, women and
children whose migration to the United States is the result of forced
labor or involuntary participation in the sex industry or other
industry. Because the Trafficking Victims Protection Reauthorization
Act of 2005 expanded programs to assist U.S. citizen and permanent
resident trafficking victims, ORR has needed to serve a higher number
of victims in recent years, while the number identified continues to
grow. At the same time, current funding levels are not adequate to
serve the number of victims that request them, and those that are being
served would benefit greatly from a longer service period. While
trafficking victims are currently eligible for four months of basic
services after victim certification, we believe that the length of the
service period should be 2-3 times longer so that victims can utilize
necessary services until they are back on their feet after suffering
the effects of such a horrendous crime. RCUSA recommends an allocation
of at least $20 million for services to trafficking victims in fiscal
year 2009.
The U.S. resettlement program remains one of the most cost
effective humanitarian efforts carried out by the U.S. Government given
its ability to garner large scale private support for its goals. A
program of $983 million--the amount which we are asking Congress to
consider--leverages millions more in maintaining the position of the
United States as the world's leading society in extending a
compassionate and caring hand to refugees who are fortunate enough to
find their safety in our shores.
Thank you.
______

Prepared Statement of Rotary International

Chairman Harkin, Senator Specter, members of the subcommittee,
Rotary International appreciates this opportunity to submit testimony
in support of the polio eradication activities of the U.S. Centers for
Disease Control and Prevention (CDC). The effort to eradicate polio
stands as an unprecedented model of cooperation among national
governments, civil society and U.N. agencies which have worked together
over many years to achieve a global public good. Longstanding
collaboration has enabled us to overcome tremendous challenges: war,
natural disasters, and lack of infrastructure among them, so that we
are currently within reach of shared victory over polio. What have we
learned? Polio eradication strategies work even in the most challenging
environments and under the most trying circumstances.

PROGRESS IN THE GLOBAL PROGRAM TO ERADICATE POLIO

I would like to take this opportunity to thank you, Chairman
Harkin, Senator Specter, and members of the subcommittee for your
tremendous commitment to this effort. Thanks to your leadership in
appropriating funds, progress toward a polio-free world continues.
--Only 4 countries are still polio-endemic--the lowest number in
history: Nigeria, India, Pakistan and Afghanistan. And in these
countries, polio circulates in very limited geographic areas.
--The number of polio cases has fallen from an estimated 350,000 in
1988 to slightly more than 1300 in 2007--a more than 99 percent
decline in reported cases.
--Cases due to type 1 polio, the most virulent and paralytic of the
two remaining types of polio, fell by 84 percent in 2007. The
absence of type 1 polio from the western part of Uttar Pradesh
state, India, is a particularly striking development as this is
the only area in India which had never interrupted indigenous
polio transmission.
--Polio was cut by 76 percent in northern Nigeria in 2007.
--25 of the 27 countries that were reinfected between 2003 and 2007
have stopped transmission of imported poliovirus.
--Among the reinfected countries, Somalia has just demonstrated that
polio eradication can be achieved even in countries where a
functioning government does not exist, and where longstanding
civil strife and insecurity prevail. March 25, 2008 marks the
1-year anniversary since the last case of polio was reported in
Somalia.
--The tools to eradicate polio are better than ever--the program now
has vaccines which are twice as effective and diagnostic tools
that detect and track poliovirus twice as fast as before.
--Policies to minimize the risks and consequences of the
international spread of wild poliovirus are now in place.
Prospects for polio eradication are bright, but significant
challenges remain. For example, operational challenges in reaching
every child in the four endemic countries range from issues related to
campaign quality, security, and funding. In addition, outbreak response
activities in countries such as the Democratic Republic of Congo,
Angola, Chad and Sudan are tragic and costly reminders that no child is
safe until polio has been eradicated everywhere.
The strong support received from the Department of Health and Human
Services and the U.S. State Department in promoting global polio
eradication efforts at various international forums, engaging with
other donor countries to secure additional resources, and addressing
challenges in polio-affected countries is greatly appreciated. The
continued engagement of the U.S. State Department will also be
necessary to help secure ``Days of Tranquility'' in zones of conflict
in southern Afghanistan to provide safe access to vaccinators to reach
and vaccinate children during polio eradication campaigns.
The ongoing support of donor countries is essential to assure the
necessary human and financial resources are made available to polio-
endemic countries to take advantage of the window of opportunity to
forever rid the world of polio. Access to children is needed,
particularly in conflict-affected areas such as Afghanistan and its
shared border with Pakistan. Polio-free countries must maintain high
levels of routine polio immunization and surveillance. The continued
leadership of the United States is essential to ensure we meet these
challenges.

THE ROLE OF ROTARY INTERNATIONAL

Since 1985, Rotary International, a global association of more than
30,000 Rotary clubs, with a membership of over 1.2 million business and
professional leaders in more than 200 countries, has been committed to
battling this crippling disease. In the United States today there are
more than 7,700 Rotary clubs with over 375,000 members. All of our
clubs work to promote humanitarian service, high ethical standards in
all vocations, and international understanding. Rotary International
stands hand-in-hand with the United States Government and governments
around the world to fight polio through local volunteer support of
National Immunization Days, raising awareness about polio eradication,
and providing financial support for the initiative.
Rotary International's financial commitment will reach U.S. $850
million by the time the world is certified polio free--representing the
largest contribution by an international service organization to a
public health initiative ever. These funds have been allocated for
polio vaccine, operational costs, laboratory surveillance, cold chain,
training and social mobilization in 122 countries. More importantly,
tens of thousands of Rotarians have been mobilized to work together
with their national ministries of health, UNICEF and WHO, and with
health providers at the grassroots level in thousands of communities.
In the United States, hundreds of Rotarians have been inspired to
travel at their own expense to assist their fellow Rotarians in polio-
affected countries in Africa and Asia during National Immunization
Days.
Rotary also leads the United States Coalition for the Eradication
of Polio, a group of committed child health advocates that includes the
March of Dimes Birth Defects Foundation, the American Academy of
Pediatrics, the Task Force for Child Survival and Development, the
United Nations Foundation, and the U.S. Fund for UNICEF. These
organizations join us in expressing appreciation to you for your
staunch support of the Global Polio Eradication Initiative.

THE ROLE OF THE U.S. CENTERS FOR DISEASE CONTROL AND PREVENTION (CDC)

Rotary commends CDC for its leadership in the global polio
eradication effort, and greatly appreciates the subcommittee's support
of CDC's polio eradication activities. For fiscal year 2009, we would
expect that CDC will spend $101.254 million for their polio eradication
efforts, equal to the fiscal year 2006 level. This investment has
helped to make the United States the leader among donor nations in the
drive to eradicate this crippling disease. Due to Congress's unwavering
support, in 2008 CDC is able to:
--Support the international assignment of more than 350 long- and
short-term epidemiologists, virologists, and technical officers
to assist the World Health Organization and polio-endemic
countries to implement polio eradication strategies, and 15
technical staff on direct assignment to WHO and UNICEF to
assist polio-endemic countries.
--Provide $40 million to UNICEF for approximately 240 million doses
of polio vaccine and $9 million for operational costs for NIDs
in all polio-endemic countries and other high-risk countries in
Asia, the Middle East and Africa. Most of these NIDs would not
take place without the assurance of CDC's support.
--Provide more than $25 million to WHO for surveillance, technical
staff and NIDs' operational costs, primarily in Africa. As
successful NIDs take place, surveillance is critical to
determine where polio cases continue to occur. Effective
surveillance can save resources by eliminating the need for
extensive immunization campaigns if it is determined that polio
circulation is limited to a specific locale.
--Train virologists from all over the world in advanced poliovirus
research and public health laboratory support. CDC's Atlanta
laboratories serve as a global reference center and training
facility.
--Provide the largest volume of both operational (poliovirus
isolation) and technologically sophisticated (genetic
sequencing of polio viruses) lab support to the 145
laboratories of the global polio laboratory network. CDC has
the leading specialized polio reference lab in the world.
--Serve as the primary technical support agency to WHO on scientific
and programmatic research regarding: (1) laboratory containment
of wild poliovirus stocks following polio eradication, and (2)
when and how to stop or modify polio vaccination worldwide
following global certification of polio eradication.

BENEFITS OF POLIO ERADICATION

Since 1988, over 5 million people who would otherwise have been
paralyzed will be walking because they have been immunized against
polio. Tens of thousands of public health workers have been trained to
investigate cases of acute flaccid paralysis and manage massive
immunization programs. Cold chain, transport and communications systems
for immunization have been strengthened.
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 all 47 countries of the Americas are free of
indigenous measles, due in part to improvements in the public health
infrastructure implemented during the war on polio. The disease
surveillance system--the network of 145 laboratories and trained
personnel established during the Polio Eradication Initiative--is now
being used to track measles, rubella, yellow fever, meningitis, and
other deadly infectious diseases. Most recently, polio health workers
have been trained to recognize symptoms of Avian Influenza in order to
support surveillance and potential outbreak response activities for
this emerging public health threat. The AFP surveillance system and
global laboratory network that supports it will continue to support the
surveillance of other diseases long after polio has been eradicated.
NIDs for polio have been used as an opportunity to give children
essential vitamin A, which, like polio, is administered orally, saving
the lives of at least 1.5 million children since 1998. The campaign to
eliminate polio from communities has led to an 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. Also, the unprecedented public/private
sector cooperation is a model for other public health initiatives.
Polio eradication is a cost-effective public health investment, as
its benefits accrue forever. On the other hand, more than 10 million
children will be paralyzed in the next 40 years if the world fails to
capitalize on the more than $5 billion already invested in polio
eradication.

FISCAL YEAR 2009 BUDGET REQUEST

The World Health Organization estimates that $1.8 billion is needed
from donors for the period 2008-2012. For fiscal year 2009, we
respectfully request that you maintain the level of funding that has
been provided in the past ($101.254 million) for the targeted polio
eradication efforts of the Centers for Disease Control and Prevention.
The funds we are seeking will allow CDC to continue intense
supplementary immunization activities in Asia and to improve the
quality of immunization campaigns in Africa to interrupt transmission
of polio in these regions as quickly as possible. These funds will also
help maintain certification standard surveillance. This will ensure
that we protect the substantial investment we have made to protect the
children of the world from this crippling disease by supporting the
necessary eradication activities to eliminate polio in its final
strongholds--in South Asia and sub-Saharan Africa.
The United States' commitment to polio eradication has stimulated
other countries to increase their support. G8 member states, many of
which were already leading donors to the Polio Eradication Initiative,
have encouraged other donors to provide support, and have emphasized
the importance of polio eradication when meeting with leaders of polio-
endemic countries. As a result, the base of donor nations that have
contributed to the Global Polio Eradication Initiative has expanded to
include Spain, Sweden, Saudi Arabia, and even contributions from United
Arab Emirates, Kuwait, Hungary, and Turkey.
Continued political commitment is essential in all polio-affected
countries. Intense political commitment on the part of endemic nations
is also essential to ensuring polio eradication is achieved. India,
Nigeria and Pakistan have invested significant human and financial
resources in their own polio eradication activities. In Afghanistan,
President Karzai has appointed a special Polio Action Group to maximize
ministerial coordination of all polio eradication activities. In
Afghanistan, President Karzai has appointed a Polio Action Group that
reports directly to him. Such strong leadership demonstrates the
priority these countries place on polio eradication.
The strong resolve of the remaining polio affected countries
combined with the continued leadership of the United States and other
global donors will ensure that we seize the opportunity to banish the
crippling polio virus to the history books. The lessons learned from
the shared victory of governments, U.N. agencies, and civil society
entities like Rotary International will leave a lasting legacy for
future public health and development initiatives.
______

Prepared Statement of the Scleroderma Foundation

I am Cynthia Cervantes, I am 12 and in the eighth grade. I live in
Southern California and in October 2006 I was diagnosed with
scleroderma. Scleroderma means ``hard skin'' which is literally what
scleroderma does and, in my case, also causes my internal organs to
stiffen and contract. This is called diffuse scleroderma. It is a
relatively rare disorder effecting only about 300,000 Americans.
About 2 years ago I began to experience sudden episodes of
weakness, my body would ache and my vision was worsening, some days it
was so bad I could barely get myself out of bed. I was taken to see a
doctor after my feet became so swollen that calcium began to ooze out.
It took the doctors (period of time) to figure out exactly what was
wrong with me, because of how rare scleroderma is.
There is no known cause for Scleroderma, which affects three times
as many women as men. Generally, women are diagnosed between the ages
of 25 and 45, but some kids, like me, are affected earlier in life.
There is no cure for scleroderma, but it is often treated with skin
softening agents, anti-inflammatory medication, and exposure to heat.
Sometimes a feeding tube must be used with a scleroderma patient
because their internal organs contract to a point where they have
extreme difficulty digesting food.
The Scleroderma Foundation has been very helpful to me and my
family. They have provided us with materials to educate my teachers and
others about my disease. Also, the support groups the foundation helps
organize are very helpful because they help show me that I can live a
normal, healthy life, and how to approach those who are curious about
why I wear gloves, even in hot weather. It really means a lot to me to
be able to interact with other people in the same situation as me
because it helps me feel less alone.
Mr. Chairman, because the causes of scleroderma are currently
unknown and the disease is so rare, and we have a great deal to learn
about it in order to be able to effectively treat it. I would like to
ask you to please significantly increase funding for the National
Institute of Health so treatments can be found for other people like me
who suffer from scleroderma. It would also be helpful to start a
program at the Centers for Disease Control and Prevention to educate
the public and physicians about scleroderma.

SCLERODERMA FOUNDATION

The Scleroderma Foundation is a nonprofit organization based in
Danvers, MA with a three-fold mission of support, education, and
research. The Foundation has 21 chapters nationwide and over 175
support groups.
The Scleroderma Foundation was established on January 1, 1998
through a merger between two organizations, one on the west coast and
one on the east coast. Both organizations can trace their beginnings
back to the early 1970s.
The Foundation provides support for people living with scleroderma
and their families through programs such as peer counseling, doctor
referrals, and educational information, along with a toll-free
telephone helpline for patients and a quarterly magazine, The
Scleroderma Voice.
The Foundation provides education about the disease to patients,
families, the medical community, and the general public through a
variety of awareness programs at both the local and national levels.
The Foundation awards over $1 million in peer-reviewed research
grants annually to institutes and universities to stimulate progress in
the search for a cause and cure for scleroderma.
The Foundation strives to boost awareness about the disease to
patients, families, the medical community and the general public to not
only generate more funding for medical research, but foster a greater
understanding of the complications faced by people living with the
disease.
Among the many programs arranged by the Foundation is the Annual
Patient Education Conference held each summer. The conference brings
together an average of 500 attendees and experts for a wide range of
workshops on such topics as the latest research initiatives, coping and
disease management skills, caregiver support, and exercise programs.

SCLERODERMA OVERVIEW

Scleroderma is an autoimmune disease which means that it is a
condition in which the body's immune system attacks its own tissues. In
autoimmune disorders, this ability to distinguish foreign from self is
compromised. As immune cells attack the body's own tissue, inflammation
and damage result. Scleroderma (the name means ``hard skin'') can vary
a great deal in terms of severity. For some, it is a mild condition;
for others it can be life threatening. Although there are medications
to slow down disease progression and help with symptoms, there is as
yet no cure for scleroderma.

WHO GETS SCLERODERMA?

There are many clues that define susceptibility to develop
scleroderma. A genetic basis for the disease has been suggested by the
fact that it is more common among patients whose family members have
other autoimmune diseases (such as lupus). In rare cases, scleroderma
runs in families, although for the vast majority of patients there is
no other family member affected. Some Native Americans and African
Americans get worse scleroderma disease than Caucasians.
Women are more likely to get scleroderma. Environmental factors may
trigger the disease in the susceptible host. Localized scleroderma is
more common in children, whereas scleroderma is more common in adults.
However, both can occur at any age.
There are an estimated 300,000 people in the United States who have
scleroderma, about one third of whom have the systemic form of
scleroderma. Diagnosis is difficult and there may be many misdiagnosed
or undiagnosed cases as well.
Scleroderma can develop and is found in every age group from
infants to the elderly, but its onset is most frequent between the ages
of 25 to 55. There are many exceptions to the rules in scleroderma,
perhaps more so than in other diseases. Each case is different.

CAUSES OF SCLERODERMA

The cause is unknown. However, we do understand a great deal about
the biological processes involved. In localized scleroderma, the
underlying problem is the overproduction of collagen (scar tissue) in
the involved areas of skin. In systemic sclerosis, there are three
processes at work: blood vessel abnormalities, fibrosis (which is
overproduction of collagen) and immune system dysfunction, or
autoimmunity.

RESEARCH

Research suggests that the susceptible host for scleroderma is
someone with a genetic predisposition to injury from some external
agent, such as a viral or bacterial infection or a substance in the
diet or environment. In localized scleroderma, the resulting damage is
confined to the skin. In systemic sclerosis, the process causes injury
to blood vessels, or indirectly perturbs the blood vessels by
activating the immune system.
Research continues to assemble the pieces of the scleroderma puzzle
to identify the susceptibility genes, to find the external trigger and
cellular proteins driving fibrosis, and to interrupt the networks that
perpetuate the disease.

TYPES OF SCLERODERMA

There are two main forms of scleroderma: systemic (systemic
sclerosis, SSc) that usually affects the internal organs or internal
systems of the body as well as the skin, and localized that affects a
local area of skin either in patches (morphea) or in a line down an arm
or leg (linear scleroderma), or as a line down the forehead
(scleroderma en coup de sabre). It is very unusual for localized
scleroderma to develop into the systemic form.

Systemic Sclerosis (SSc)
There are two major types of systemic sclerosis or SSc: limited
cutaneous SSc and diffuse cutaneous SSc. In limited SSc, skin
thickening only involves the hands and forearms, lower legs and feet.
In diffuse cutaneous disease, the hands, forearms, the upper arms,
thighs, or trunk are affected.
The face can be affected in both forms. The importance of making
the distinction between limited and diffuse disease is that the extent
of skin involvement tends to reflect the degree of internal organ
involvement.
Several clinical features occur in both limited and diffuse
cutaneous SSc. Raynaud's phenomenon occurs in both. Raynaud's
phenomenon is a condition in which the fingers turn pale or blue upon
cold exposure, and then become ruddy or red upon warming up. These
episodes are caused by a spasm of the small blood vessels in the
fingers. As time goes on, these small blood vessels become damaged to
the point that they are totally blocked. This can lead to ulcerations
of the fingertips.
People with the diffuse form of SSc are at risk of developing
pulmonary fibrosis (scar tissue in the lungs that interferes with
breathing, also called interstitial lung disease), kidney disease, and
bowel disease.
The risk of extensive gut involvement, with slowing of the movement
or motility of the stomach and bowel, is higher in those with diffuse
rather than limited SSc. Symptoms include feeling bloated after eating,
diarrhea or alternating diarrhea and constipation.
Calcinosis refers to the presence of calcium deposits in, or just
under, the skin. This takes the form of firm nodules or lumps that tend
to occur on the fingers or forearms, but can occur anywhere on the
body. These calcium deposits can sometimes break out to the skin
surface and drain whitish material (described as having the consistency
of toothpaste).
Pulmonary Hypertension (PH) is high blood pressure in the blood
vessels of the lungs. It is totally independent of the usual blood
pressure that is taken in the arm. This tends to develop in patients
with limited SSc after several years of disease. The most common
symptom is shortness of breath on exertion. However, several tests need
to be done to determine if PH is the real culprit. There are now many
medications to treat PH.

Localized Scleroderma
Morphea
Morphea consists of patches of thickened skin that can vary from
half an inch to six inches or more in diameter. The patches can be
lighter or darker than the surrounding skin and thus tend to stand out.
Morphea, as well as the other forms of localized scleroderma, does not
affect internal organs.

Linear scleroderma
Linear scleroderma consists of a line of thickened skin down an arm
or leg on one side. The fatty layer under the skin can be lost, so the
affected limb is thinner than the other one. In growing children, the
affected arm or leg can be shorter than the other.

Scleroderma en coup de sabre
Scleroderma en coup de sabre is a form of linear scleroderma in
which the line of skin thickening occurs on the forehead or elsewhere
on the face. In growing children, both linear scleroderma and en coup
de sabre can result in distortion of the growing limb or lack of
symmetry of both sides of the face.

CONCLUSION

Unfortunately, support for scleroderma research at the National
Institutes of Health over the past 5 years has been flat funded at $11
million, down from $13 million in 2003. These figures are extremely
frustrating to our patients who recognize biomedical research as their
best hope for a better quality of life. It is also of great concern to
our researchers who have promising ideas they would like to explore if
resources were available.
As Congress works to finalize the HHS appropriations bill for
fiscal year 2009, we encourage you to support a 6.5 percent increase
for the NIH. This funding recommendation has been endorsed by over 300
health care organizations and would ensure additional support for
scleroderma research. The main institute responsible for scleroderma at
the NIH is the National Institute of Arthritis and Musculoskeletal and
Skin Diseases.
______

Prepared Statement of the Society for Neuroscience

INTRODUCTION

Mr. Chairman and members of the subcommittee, I am Eve Marder,
Ph.D., president of the Society for Neuroscience (SfN) and the Victor
and Gwendolyn Beinfield Professor of Neuroscience at Brandeis
University. It is my honor to submit this testimony on behalf of SfN in
support of the National Institutes of Health.
My research focuses on understanding how circuit function arises
from the intrinsic properties of individual neurons and their synaptic
connections. Of particular interest is the extent to which similar
circuit outputs can be generated by multiple mechanisms, both in
different individual animals, or in the same animal over its lifetime.
To address this, my lab studies the central pattern generating circuits
in the crustacean stomatogastric nervous system, such as those found in
crabs and lobsters. Central pattern generators are groups of neurons
found in vertebrate and invertebrate nervous systems responsible for
the generation of specific rhythmic behaviors such as walking,
swimming, and breathing. I am the recipient of Federal research and
training support from the National Institutes of Health and National
Science Foundation.

FISCAL YEAR 2009 BUDGET REQUEST

I respectfully request that Congress commit to continuing to expand
the Nation's investment in medical research by increasing the NIH
budget by $1.9 billion in fiscal year 2009. This recommended increase
would match biomedical inflation with 3 percent added to account for
real growth. The administration's request of $29.2 billion for NIH in
fiscal year 2009 represents the sixth consecutive year that the
President's proposed budget for the NIH has failed to keep pace with
biomedical inflation. In that period, a combination of minimal
increases and cuts has resulted in an approximately 11 percent decline
in the agency's purchasing power due to inflation. If the President's
fiscal year 2009 request becomes law, NIH will have lost 13.4 percent
of its purchasing power due to inflation, undermining the value of the
increases gained when Congress doubled the NIH budget.
This recommendation, supported across the research and patient
advocacy communities, would increase NIH's budget by 6.5 percent,
halting the erosion of the Nation's medical research effort, and
allowing the world's pre-eminent research enterprise to accelerate the
momentum of discovery to improve the health and quality of life for
millions of Americans. NIH-funded research is driving the
transformation of science, medicine and health care. At a time of
unparalleled scientific opportunities and unprecedented health
challenges, NIH must be given the resources to continue to move
forward, not stand in place.

WHAT IS THE SOCIETY FOR NEUROSCIENCE?

The Society for Neuroscience is a nonprofit membership organization
of basic scientists and physicians who study the brain and nervous
system. Recognizing the field's tremendous potential, the Society was
formed in 1969 with less than 500 members. Today, SfN's membership
numbers more than 38,000 and it is the world's largest organization of
scientists devoted to the study of the brain. Our member
neuroscientists work to describe the human brain and how it functions
normally, determine how the nervous system develops, matures and
maintains itself through life; and improve treatment and prevention of
many devastating neurological and psychiatric disorders.
Neuroscience is a unified field that integrates biology, chemistry,
and physics with studies of structure, physiology, and behavior,
including human emotional and cognitive functions. Neuroscience
research includes genes and other molecules that are the basis for the
nervous system, individual neurons, and ensembles of neurons that make
up systems and behavior. SfN is devoted to education about the latest
advances in brain research, and to raising awareness of the need to
make neuroscience research a funding priority.

NIH-FUNDED RESEARCH SUCCESSES LEAD TO HEALTH ADVANCES

Today, scientists have a greatly improved understanding of how the
brain functions thanks to NIH-funded research. To illustrate this
progress, SfN has created a 36-part series, called Brain Research
Success Stories, which discusses some of the progress that has resulted
from Federal funding for biomedical research during the period of the
doubling. The successes in neuroscience research outlined below would
not have been possible without NIH funding, but future discoveries are
threatened by eroding funds. Sustained, consistent and predictable NIH
support is essential to fully exploring the possible advances unearthed
by this exciting research.
--Depression.--Depression is one of the most common and costly brain
diseases, afflicting 18.8 million adults in the United States
each year--about 10 percent of the country's population over
the age of 18. Depressed people are at increased risk for
substance abuse, suicide, eating disorders, and illnesses like
heart disease and stroke. Depression is also a drain on the
economy. It costs $44 billion in lost productivity in the
United States every year. The National Institute of Mental
Health now lists depression as the country's leading cause of
disability. Over the past 10 years, research funded by NIH has
led to a new generation of antidepressants--selective serotonin
reuptake inhibitors (SSRIs)--that produce fewer serious side
effects, and more recently, scientists are discovering
potentially powerful strategies for entirely new classes of
antidepressants. With continued NIH funding, scientists will
uncover how these new drugs, sometimes in combination with
psychotherapy, can dramatically improve the depressed brain's
functioning. Investigations into brain stimulation, brain
imaging, and genetics promise to yield better treatments for
depression.
--Traumatic Brain Injury.--Whether it is from a slip on the ice, a
crash into the windshield, or a blast from an improvised
explosive device, each year an estimated 1.5 million Americans
sustain a traumatic brain injury (TBI). Characterized by a
sudden blow to the head, this type of injury can brutally
damage the brain and its functioning, resulting in acute
impairment of consciousness, or visual, motor, or sensory
deficits. While patients with these symptoms often recover
partially or even completely, those with even mild to moderate
TBI can later develop epilepsy or related disorders. In fact,
TBI is a leading cause of disability among American children
and young adults. Recent research also has shown that TBI may
increase a person's risk for future development of Alzheimer's
disease. Research funded by NIH will lead to new strategies
that could take direct action against the injury and create
much greater improvement in patient care. Techniques that hold
promise include the use of transplanted neural stem cells and
imaging tests that can identify brain tissue swelling, allowing
early medical intervention. Continued funding for research
could help scientists develop new therapies that reverse brain
damage and significantly improve the lives of Americans.
--Parkinson's Disease.--Recent advances in understanding the causes
of Parkinson's disease, and the possibility of new treatment
options, have brought a renewed sense of optimism that
Parkinson's disease can be treated more effectively. Current
research programs funded by National Institute of Neurological
Disorders and Stroke are using animal models to study how the
disease progresses and to develop new drug therapies.
Scientists looking for the cause of PD continue to search for
possible environmental factors, such as toxins, that may
trigger the disorder, and study genetic factors to determine
how defective genes play a role. Other scientists are working
to develop new protective drugs that can delay, prevent, or
reverse the disease. Research on deep brain stimulation is a
potentially revolutionary therapeutic approach that is being
explored as a treatment for Parkinson's and other diseases and
disorders. As scientists search for new treatments and a
possible cure for Parkinson's disease, they are finding that
this illness shares much with several other diseases and
conditions, such as depression, Alzheimer's disease,
Amyotrophic Lateral Sclerosis, and Huntington's disease. Basic
research examining gene mutations, cell death, and how to
repair damaged cells has been essential to discovering these
commonalities. With continued funding, scientists will be able
to follow those paths and bring about the medical advances
needed to halt the progression of Parkinson's and diseases with
similar traits.
--Epilepsy.--Researchers supported by NIH are studying potential
antiepileptic drugs with the goal of enhancing treatment for
epilepsy. Scientists continue to study how neurotransmitters
interact with brain cells to control nerve firing and how non-
neuronal cells in the brain contribute to seizures and are
working to identify genes that may influence epilepsy. This
information may allow doctors to prevent epilepsy or to predict
which treatments will be most beneficial. Doctors are now
experimenting with several new types of therapies for epilepsy,
including transplanting fetal pig neurons into the brains of
patients to learn whether cell transplants can help control
seizures, transplanting stem cells, and using a device that
could predict seizures up to 3 minutes before they begin.
Funding is needed to pursue patient-oriented research,
developmental neurobiology, genetics, advanced technology,
imaging, pharmacotherapeutics, and other disciplines to develop
innovative research proposals related to the field of epilepsy.

BASIC RESEARCH--FUNDAMENTAL SCIENCE

Continued investment in basic research funded by NIH is also
essential to ensuring discoveries that will inspire scientific pursuit
and medical progress for future generations. Basic research advances
scientific knowledge and medical innovation by expanding understanding
of the structure and function of molecules, genes, cells, systems and
complex behaviors. Clinical researchers often use these fundamental
findings to identify new applications that lead to medical treatments.
--Plasticity and Alzheimer's Disease.--Researchers in the 1960s
wanted to understand more about growth and repair in the adult
brain and conducted a number of experiments with rodents to
help illuminate these processes. They made an amazing and
unexpected discovery: newly created cells that later became
neurons, or brain cells. This process, called neurogenesis, is
just one example of how ``plastic'' or adaptable the brain is.
With this knowledge, researchers are investigating how normal
aging, as well as neurodegenerative diseases like Alzheimer's
disease, affect that adaptability, and how we can maintain
health brain function as we age. Future research may one day
allow scientists to capture the adult brain's enormous capacity
to adapt in order to help prevent, or perhaps even reverse,
memory-robbing Alzheimer' disease.
--Light-activated Molecules.--The discovery of a new class of
proteins from algae molecules is now enabling scientists to
develop new tools to explore how specific types of nerve cells
are interconnected and how they function in circuits in the
brain. These molecules, called channelrhodopsins, can be used
to effectively turn electrical activity in cells ``on'' and
``off'' with light. The new application allows researchers to
use light to study and even manipulate brain activity, and
could result someday in improved therapies that target only
diseased cells and avoid unwanted side effects in disorders
such as Parkinson's, depression, chronic pain, and epilepsy.
--Central Pattern Generators and Spinal Cord Recovery.--Central
pattern generators are circuits in the brainstem and spinal
cord that generate rhythmic movements such as breathing and
walking. Studies on central pattern generators in animals after
spinal cord injury first suggested the importance of weight-
assisted treadmill and bicycle training for spinal cord injured
patients. These methods, together with advances in
understanding the molecular control of regeneration and
regrowth in the spinal cord, should lead to significant
improvements in the outcomes of individuals with spinal cord
injury.

THE PIPELINE OF NEW RESEARCHERS

Five consecutive years of flat funding the NIH budget is deterring
promising young researchers. A recent report issued by a consortium of
leading research universities and a major teaching hospital--A Broken
Pipeline? Flat Funding of the NIH Puts a Generation of Science at
Risk--warns that America stands to lose a generation of young
researchers and the cures they could discover if current NIH funding
trends continue.
The NIH budget constraints compromise all sections of the academic
research pipeline. The overall success rate for NIH research project
grants dropped from 32 percent in 1999 to 24 percent in 2007, meaning
that more than three of every four research proposals are not funded.
Undergraduate and graduate students watch their mentors struggling for
funding, and are opting out of science as a career. Extremely
productive senior investigators are forced to fire long-term research
personnel, often compromising the transmission of important laboratory
methods. Even if those investigators are refunded 6 months or a year
later, the damage to the research enterprise may long outlast the time
course of the lapsed funding, because of loss of momentum and loss of
crucial trained laboratory personnel. In the past year, NIH has been
very proactive to ensure that a number of first-time investigators are
funded, even with the very restricted resources available. However,
young investigators remain extremely vulnerable at the time of their
first grant renewal. During the past year or two many investigators
have been spending significantly more time writing, rewriting and
reviewing grant applications, and consequently doing less actual
science. The cost of the loss of productivity due to the grant squeeze
is difficult to calculate, but is considerable.
This squeeze on the research workforce impacts the Nation's
economic vitality globally, as the United States fights to retain its
competitive edge in scientific and technological sectors. In fact, 70
percent of Americans believe the United States is losing its global
competitive edge in science, technology, and innovation, according to a
Research!America poll. We are especially concerned that the United
States may soon no longer be the source of the basic and translational
science that fosters advances in medicine. Also, decreases in the
science workforce could have a deleterious effect on local and State
economies, as universities and research institutions are the largest
employers in some communities. The dollars brought in by these
institutions help to spur growth in biotechnology, pharmaceutical,
device and imaging manufacturing, and other industries.

CONCLUSION

The brain is the most complex living structure known in the
universe. Neuroscience advances our understanding of the brain and
nervous system. This enables us to better understand human behavior--
from how we learn to why people have trouble getting along together--
and to discover ways to prevent or cure many devastating brain
disorders. The more than 1,000 disorders of the brain and nervous
system result in more hospitalizations than any other disease group,
including heart disease and cancer.
As SfN members continue to pursue exciting new avenues of research
and make amazing breakthroughs everyday, I urge Congress not to limit
these innovations and revelations by providing inadequate Federal
funding. Sustained, healthy increases for the National Institutes of
Health that keep up with inflation are essential to neuroscientists who
conduct the research that advances scientific understanding and leads
to health improvements urgently needed by countless Americans.
Thank you for the opportunity to submit this testimony.
______

Prepared Statement of the Society of Teachers of Family Medicine,
Association of Departments of Family Medicine, Association of Family
Medicine Residency Directors, and the North American Primary Care
Research Group

Mr. Chairman, the Society of Teachers of Family Medicine, the
Association of Departments of Family Medicine, the Association of
Family Medicine Residency Directors, and the North American Primary
Care Research Group, thank you for the opportunity to provide this
statement for the record on behalf of funding for family medicine
training programs under the Health Services and Resources
Administration (HRSA), the Agency for Healthcare Research and Quality
(AHRQ) and the National Institutes of Health (NIH).

HEALTH PROFESSIONS--PRIMARY CARE MEDICINE AND DENTISTRY (TITLE VII,
SECTION 747)

We request that this committee return funding of the Primary Care
Medicine and Dentistry Cluster (Section 747 of Title VII) to its
earlier (fiscal year 2002) funding level of $93 million. Since fiscal
year 2004, this program has lost more than 50 percent of its funding.
Currently (fiscal year 2008), the program is funded at less than $48
million. The President's budget for fiscal year 2009 continues to zero
out funding for this cluster.

Primary Care in Crisis
Why should Congress restore funding for this program? Primary care
in the United States is in crisis. The United States Government
Accountability Office (GAO) testified before the Senate HELP Committee
in February of this year. It described the difficulties of increasing
the number of primary care physicians in the United States and the
benefits to the nation of doing so. One of its findings concluded:
``Health professional workforce projections that are mostly silent
on the future supply of and demand for primary care services are
symptomatic of an ongoing decline in the nation's financial support for
primary care medicine.'' \1\
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\1\ Testimony before the Committee on Health, Education, Labor, and
Pensions, U.S. Senate. Primary Care Professionals: Recent Supply
Trends, Projections and Valuation of Services. Statement of A. Bruce
Steinwald, Director Health Care, United States Accountability Office.
February 12, 2008 GAO-08-472T.
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Data from the Congressional Research Service (CRS) also show that
reduced funding for the primary care medicine and dentistry cluster had
a deleterious impact on the effectiveness of these programs--at a time
when more, rather than less primary care is needed. For example, ``In
fiscal year 2006, the program supported a total of 17,870 individuals
in clinical training in underserved areas, a decrease from the support
of 31,153 individuals in fiscal year 2005.'' \2\ This is a decrease of
almost 43 percent.
---------------------------------------------------------------------------
\2\ CRS Report to Congress. February 7, 2008 Title VII Health
Professions Education and Training: Issues in Reauthorization (Order
Code RL32546).
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Additional testimony before the Senate HELP Committee last month
clarified the problems that primary care in the United States currently
faces. Kevin Grumbaugh, MD, Professor and Chair, UCSF Department of
Family and Community Medicine, and a recognized expert in workforce
research, put it this way: ``The primary care infrastructure in the
United States is crumbling, and patient access to primary care is
suffering throughout the nation. From 1997 to 2005, the number of U.S.
medical school graduates entering careers in family medicine
residencies dropped by 50 percent, as did the number of internal
medicine residents planning careers in primary care rather than
specialty medicine. In a 2006 survey of 92 large or medium-sized
physician groups, 94 percent of the respondents ranked internists or
family physicians as the most difficult to recruit. Federally funded
community health centers reported more than 750 vacant positions for
primary care physicians in 2004. In 2007, 29 percent of Medicare
beneficiaries reported a problem finding a primary care physician, up
from 24 percent in 2006.''
The Primary Care Payoff \3\
---------------------------------------------------------------------------
\3\ Access Granted: The Primary Care Payoff, August 2007, National
Association of Community Health Centers, The Robert Graham Center,
Capitol Link (pgs 1-2).
---------------------------------------------------------------------------
According to a report prepared by the National Association of
Community Health Centers, The Robert Graham Center, and Capitol Link,
``There is a growing consensus among the nation's political and
industry leaders that the U.S. health care crisis has shifted from the
realm of the poor and disenfranchised, to the doorstep of middle-class
America.'' Additionally, they cite the following: ``If every American
made use of primary care, the health care system would see $67 billion
in savings annually. This reflects not only those who do not have
access to primary care, but also those who rely extensively on costly
specialists for most of their care, leading to inefficiencies in the
system. More specifically, the expansion of Medical homes can even more
dramatically facilitate effective use of health care, improve health
outcomes, minimize health disparities, and lower overall costs of
care.''
The GAO also cites the importance of primary care in terms of
quality and cost:
``Ample research in recent years concludes that the Nation's over
reliance on specialty care services at the expense of primary care
leads to a health care system that is less efficient. At the same time,
research shows that preventive care, care coordination for the
chronically ill, and continuity of care--all hallmarks of primary care
medicine--can achieve improved outcomes and cost savings.'' \4\
[emphasis added]
---------------------------------------------------------------------------
\4\ Testimony before the Committee on Health, Education, Labor, and
Pensions, U.S. Senate. Primary Care Professionals: Recent Supply
Trends, Projections and Valuation of Services. Statement of A. Bruce
Steinwald, Director Health Care, United States Accountability Office.
February 12, 2008 GAO-08-472T.
---------------------------------------------------------------------------
An April, 2004 Health Affairs article found the quality of health
care lower in states with higher levels of Medicare spending. The
authors suggest that more specialists and fewer primary care physicians
mean higher costs and lower quality. A small increase in the number of
primary care physicians in a state was associated with a large boost in
that state's quality ranking.

The Success of Title VII, Section 747
A 2006 study by the University of California San Francisco and the
Robert Graham Center shows that medical schools that receive primary
care training dollars produce more physicians who work in Community
Health Centers (CHCs) and serve in the National Health Service Corps
(NHSC) compared to schools without Title VII primary care funding. This
finding is particularly true for family physicians. Without funding for
primary care training, fewer family physicians will be trained to work
in CHCs and serve in the Corps. Almost 4,000 family physicians and
general practitioners exposed to Title VII funding during medical
school subsequently chose to work in a CHC. Without this exposure, we
would anticipate a decrease of over 750 family physicians working in a
CHC in 2003. The JAMA article mentioned below shows 600 current
vacancies for family physicians in CHCs. Without Title VII dollars,
these data point to twice as many vacancies.
The Health Resources and Services Administration (HRSA) has
provided some new data regarding the success of Title VII programs as
part of the fiscal year 2009 budget justification document published by
the administration. It directly counters the administration's claims of
ineffectiveness of these programs, and shows the folly of zeroing out
these programs. Below are some selected excerpts:
``During the [PART] review Health Professions developed new long-
term and annual performance measures and established baseline data and
has since begun regularly collecting data and reporting on performance.
In 2007, 57 percent of graduates and program completers of Titles
VII and VIII supported programs were underrepresented minorities and/or
from disadvantaged backgrounds. This exceeded the target by 17 percent.
The proportion of trainees in Titles VII and VIII supported
programs training in medically underserved communities was 43 percent
in 2007 which exceeded the target of 41 percent. The percentage of
health professionals supported by the program entering practice in
underserved areas was 35 percent in 2007. This exceeded the target by
14 percent.''
We have demonstrated (1) the Nation needs more primary care
physicians, (2) the efficacy of primary care in reducing costs and
promoting quality, and (3) the success of Title VII programs in
producing more primary care physicians. Based on these factors, we
recommend that the Committee reinvigorate these programs by increasing
the Primary Care Medicine and Dentistry funding to a previous level of
$93 million.

The Agency for Health Care Research and Quality (AHRQ)
We request funding of $360 million for AHRQ in fiscal year 2009.
This is an increase of $25 million over fiscal year 2008, and $34
million more than the President's fiscal year 2009 Budget request. For
the last several years, even with an increase in fiscal year 2008,
funding for AHRQ has remained relatively stagnant, while it's portfolio
of work has increased dramatically. Our researchers are finding that
investigator-initiated grants are very difficult to obtain.
It should be noted that a much larger investment should be made, as
recommended by The Institute of Medicine's report, Crossing the Quality
Chasm: A New Health System for the 21st Century (2001). It recommended
$1 billion a year for AHRQ to ``develop strategies, goals, and actions
plans for achieving substantial improvements in quality in the next 5
years . . .'' The report looked at redesigning health care delivery in
the United States. AHRQ is critical to retooling the American health
care system.
One of the hallmarks of the patient centered medical home is
evidence-based medicine. Comparative effectiveness research, which
compares the impact of different options for treating a given medical
condition, is vital to improving the quality of health care. Studies
comparing various treatments (e.g. competing drugs) or differing
approaches (e.g. surgery and drug therapy) can inform clinical
decisions by analyzing not only costs but the relative medical benefits
and risks for particular patient populations.
Comparative effectiveness research holds out the promise of
reducing health care costs while improving medical outcomes. AHRQ's
Effective Health Care Program is critical if we are to realize that
promise. Although the President's budget request proposed to hold this
important program at $30 million, the same as fiscal year 2008, we hope
that the Congress will increase our investment in comparative
effectiveness research.

National Institutes of Health (NIH)
Historically, the research at NIH has failed to pose the questions
asked by family doctors in primary care practice regarding treatment of
their patients. We are encouraged by the development of the NIH Roadmap
and the Clinical and Translational Science Awards (CTSA), along with
the establishment, in statute, of a funding stream for the common fund
that demonstrates the willingness of NIH to become a more fertile arena
for family medicine and other primary care research. Hence, we support
the Ad Hoc Group for Medical Research and others' call for an increase
in NIH funding. In addition, we would like to see some report language
that would help NIH ensure that the promise of bench to bedside
research truly becomes bench to bedside to community--and back.
We support the inclusion of the following language in the report to
accompany the Labor/HHS appropriations bills for fiscal year 2008.
``Translational Research has been identified by the Director of the
National Institutes of Health (NIH) as a road map initiative. The
committee supports this effort and encourages NIH to integrate such
research as a permanent component of the research portfolio of each
institute and center. The committee urges NIH to begin discussions to
determine how best to facilitate progress in translating existing
research findings and to disseminate and integrate these findings at
the practice level. Translational research should also include the
discovery and application of knowledge within the practice setting
using such laboratories as practice-based research networks. This
research spans biological systems, patients, and communities, and
arises from questions of importance to patients and their physicians,
particularly those practicing primary care. The Committee requests that
the Director of NIH include a progress update in next year's Budget
Justification.''

CONCLUSION

We hope that the committee will be able, with the more generous
figures included in the fiscal year 2009 House and Senate Budget
Resolutions this year, to fund increases in these three important
programs: health professions primary care medicine and dentistry
training, AHRQ, and NIH. Certainly, at a minimum, we request that
funding cuts to the health professions primary care medicine and
dentistry training program be restored to at least fiscal year 2005
levels of $88.8 million. However, these programs were funded at a
historic high of $93 million in fiscal year 2002, and we support a
return to that figure.
______

Prepared Statement of the Society for Women's Health Research and
Women's Health Research Coalition

On the behalf of the Society for Women's Health Research and the
Women's Health Research Coalition, we are pleased to submit the
following testimony in support of Federal funding of biomedical
research, and more specifically women's health research.
The Society for Women's Health Research is the only national non-
profit women's health organization whose mission is to improve the
health of women through research, education, and advocacy. Founded in
1990, the Society brought to national attention the need for the
appropriate inclusion of women in major medical research studies and
the need for more information about conditions affecting women
disproportionately, predominately, or differently than men. In 1999,
the Women's Health Research Coalition was created by the Society as a
grassroots advocacy effort consisting of scientists, researchers, and
clinicians from across the country that are concerned and committed to
improving women's health research.
The Society and Coalition are committed to advancing the health of
women through the discovery of new and useful scientific knowledge. We
believe that sustained funding for biomedical and women's health
research programs conducted and supported across the Federal agencies
is absolutely essential if we are to meet the health needs of the
population and advance the Nation's research capability.

NATIONAL INSTITUTES OF HEALTH

From decoding the human genome to elucidating the scientific
components of human physiology, behavior, and disease, scientists are
unearthing exciting new discoveries which have the potential to make
our lives and the lives of our families longer and healthier. The
National Institutes of Health (NIH) has facilitated these advances by
conducting and supporting our Nation's biomedical research. World-class
researchers, scientists, and programs at NIH are dedicated to
understanding how the human body works and to gaining insight into
countless diseases and disorders. Congressional investment and support
for NIH has made the United States the world leader in medical research
and has provided a direct and significant impact on women's health
research and the careers of women scientists over the last decade.
Great strides and advancements have been made since the doubling of
the NIH budget from $13.7 billion in 1998 to $27 billion in 2003.
However, we are concerned that the momentum driving new research has
been eroded under the current budgetary constraints. Medical research
must be considered an essential investment--an investment in thousands
of newly trained and aspiring scientists; an investment to remain
competitive in the global marketplace; and an investment in our
Nation's health.
Unfortunately, the administration's proposed fiscal year 2009
budget request of $29.2 billion for NIH is identical to the final
approved budget for fiscal year 2008. This trend of flat lining not
only unravels the successes gained from the doubling of NIH's budget,
but it directly contributes to decreasing NIH's purchasing power by
almost 14 percent due to inflation. NIH only receives $28.3 billion in
the proposed budget due to the transfer of $300 million to the Global
Fund to Fight HIV/AIDS. Not only does the proposed decrease not keep
pace with the inflation rate, but it is lower than that of the
Biomedical Research and Development Price Index (BRDPI) which is
indicative of how much funding the NIH needs to maintain purchasing
power and compensate for the average yearly cost increases that occur
in maintaining research activity at the previous year's level.
Without a robust budget, NIH will be forced to reduce the number of
grants it is able to fund. The number of new grants funded by NIH has
been dropping steadily since fiscal year 2003 and this trend must stop.
This shrinking pool of available grants has a significant impact on
scientists who depend upon NIH support to cover their salaries and
laboratory expenses to conduct high quality biomedical research.
Failure to obtain a grant results in reduced likelihood of achieving
tenure. This means that new and less established researchers will be
forced to consider other careers, the end result being the loss of the
critical workforce so desperately needed to sustain America's cutting
edge in biomedical research.
In order to continue the momentum of scientific advancement and
expedite the translation of research findings from the laboratory to
the patients who depend on these advances for improved health and
welfare, the Society proposes $31.1 billion for NIH, an increase of
$1.9 billion over the fiscal year 2008 funding level. In addition, we
request that Congress strongly encourage the NIH to assure that women's
health research receives resources sufficient to meet the health needs
of all women.
Scientists have long known of the anatomical differences between
men and women, but only within the past decade have they begun to
uncover significant biological and physiological differences. Sex-based
biology, the study of biological and physiological differences between
men and women, has revolutionized the way that the scientific community
views the sexes. Sex differences play an important role in disease
susceptibility, prevalence, time of onset and severity and are evident
in cancer, obesity, heart disease, immune dysfunction, mental health
disorders, and many other illnesses. It is imperative that research
addressing these important differences between males and females be
supported and encouraged. Congress clearly recognizes these important
sex-based differences and should support NIH at an appropriate level of
funding and direct NIH to continue expanding research into sex-based
biology.

OFFICE OF RESEARCH ON WOMEN'S HEALTH

The NIH Office of Research on Women's Health (ORWH) has a
fundamental role in coordinating women's health research at NIH,
advising the NIH Director on matters relating to research on women's
health; strengthening and enhancing research related to diseases,
disorders, and conditions that affect women; working to ensure that
women are appropriately represented in research studies supported by
NIH; and developing opportunities for and support of recruitment,
retention, re-entry and advancement of women in biomedical careers.
ORWH has a pivotal role within the NIH structure and beyond to maintain
and advance not only biomedical research in women's health but also to
support careers of women in science and medicine. Furthermore, ORWH
strives to address sex and gender perspectives of women's health and
women's health research, as well as differences among special
populations of women across the entire life span, from birth through
adolescence, reproductive years, menopausal years and elderly years.
Two highly successful programs supported by ORWH that are critical
to furthering the advancement of women's health research are Building
Interdisciplinary Research Careers in Women's Health (BIRCWH) and
Specialized Centers of Research on Sex and Gender Factors Affecting
Women's Health (SCOR). These programs benefit the health of both women
and men through sex and gender research, interdisciplinary scientific
collaboration, and provide important support for young investigators in
a mentored environment.
The BIRCWH program is an innovative, trans-NIH career development
program that provides protected research time for junior faculty by
pairing them with senior investigators in an interdisciplinary mentored
environment. It is expected that each scholar's BIRCWH experience will
culminate in the development of an established independent researcher
in women's health. In 2007, ORWH funded 15 new or type II centers in
the fourth round of BIRCWH. Since 2000, 287 scholars have been trained
(76 percent women) in the twenty-four centers resulting in over 882
publications, 750 abstracts, 83 NIH grants and 85 awards from industry
and institutional sources. Each BIRCWH receives approximately $500,000
a year, most of which comes from the ORWH budget.
The SCOR program, administered by the National Institute of
Arthritis and Musculoskeletal and Skin Diseases, was developed by ORWH
in 2000 through an initial RFA that resulted in 11 SCOR Centers out of
36 applications. SCORs are designed to increase the transfer of basic
research findings into clinical practice by housing laboratory and
clinical studies under one roof. The eleven SCOR programs are
conducting interdisciplinary research focused on major medical problems
affecting women and comparing gender difference to health and disease.
Each SCOR works hard to transfer their basic research findings into the
clinical practice setting. Each program costs approximately $1 million
per year.
ORWH has made significant strides in raising awareness for women's
health issue. This past year it launched a national educational and
awareness campaign on vulvodynia in collaboration with other DHHS
agencies and non-Federal partners; co-sponsored the 8th International
Association for Chronic Fatigue Syndrome conference; co-sponsored an
agency-wide training session on sex/gender, race and ethnicity issues
in clinical research attended by over 300 NIH staff members; awarded
the co-funding of sixteen grants to 9 institutes and centers exceeding
$3.8 million for the advancement of sex/gender specific biomedical
research; and led the NIH observance of the National Women's Health
week.
Despite the advancement of women's health research and ORWH's
innovative programs to advance women scientists, it has been flat lined
at $40.9 million for fiscal year 2008 and 2009 after having also
received a cut of $249,000 in fiscal year 2006 and no additional
funding in fiscal year 2007. Flat funding must not continue to happen.
It imperative that the ORWH programs and research grants continue to
thrive. This research is vital to women and men and we implore Congress
to direct NIH to continue its support of ORWH and its programs.

DEPARTMENT OF HEALTH AND HUMAN SERVICES

The Department of Health and Human Services (HHS) has several
offices that enhance the focus of the government on women's health
research, in addition to ORWH described above. Agencies with offices,
advisors or coordinators for women's health or women's health research
are the Department of HHS, the Food and Drug Administration, the
Centers for Disease Control and Prevention, the Agency for Healthcare
Quality and Research, the Indian Health Service, the Substance Abuse
and Mental Health Services Administration, the Health Resources and
Services Administration, and the Centers for Medicare and Medicaid
Services. These agencies must be funded at levels adequate for them to
perform their assigned missions. We ask that the Committee Report
clarify that Congress supports the permanent existence of these various
offices and would like to see them appropriately funded to ensure that
their programs can continue and be strengthened in the coming fiscal
year.
The focus on women's health within HHS has been critical to the
advances made in women's health in communicating the appropriate
message to patients and health care providers. Scientists have only
just scratched the surface of understanding female biology, with new
information forthcoming as a result of the recent sequencing of the
human X chromosome. Now is the time to strongly press ahead with this
vital research to continue making discoveries and educating women about
their health and these offices are critical to the success of this
effort. Although many important programs can be identified from these
women's health offices, we would like to bring two such programs to
your specific attention, as follows.

HHS OFFICE OF WOMEN'S HEALTH

The HHS Office of Women's Health (OWH) is the government's champion
and focal point for women's health issues. It works to redress
inequities in research, health care services, and education that have
historically placed the health of women at risk. The OWH coordinates
women's health efforts in HHS to eliminate disparities in health status
and supports culturally sensitive educational programs that encourage
women to take personal responsibility for their own health and
wellness.
In 2007, the OWH led efforts to improve breastfeeding information
available to women of all cultures by offering multilingual websites
and helplines. They collaborated with other organizations to lead a
conference on ``Charting New Frontiers in Rural Women's Health,'' as
well as hosting the third Minority Women's Health Summit to address the
unique health issues many women of color experience. The OWH has
continued their efforts to improve the health of young women by
providing information on their website to address eating disorders and
HIV/AIDS prevention for aldolescent girls, in conjunction with
conducting their HIV/AIDS National Awareness Day.
Since the beginning of 2008, the OWH has led a series of Women's
Heart Health Fairs nationwide. In addition, they will empower women
across the country to get healthy by sponsoring the National Women's
Health Week in May of 2008. In conjunction with families, communities,
business and other governmental and health organizations, the OWH will
educate women on how they can improve their physical and mental health
through various behavior modifications.
It is only through continued funding that the OWH will be able to
achieve its goals. While the budget for fiscal year 2008 increased the
OWH budget by $2 million to a total of $30 million, it has been flat
lined for fiscal year 2009. This is, in essence, a decrease due to
inflation. Considering the amount and impact of women's health programs
from OWH, we urge Congress to provide an increase of $2 million for the
HHS OWH.

AGENCY FOR HEALTHCARE AND RESEARCH QUALITY

The Agency for Healthcare Research and Quality (AHRQ) is the lead
public health service agency focused on health care quality, including
coordination of all Federal quality improvement efforts and health
services research. AHRQ's work serves as a catalyst for change by
promoting the results of research findings and incorporating those
findings into improvements in the delivery and financing of health
care. This important information provided by AHRQ is brought to the
attention of policymakers, health care providers, and consumers all of
whom make a difference in the quality of health care that women
receive.
AHRQ has a valuable role in improving health care for women.
Through AHRQ's research projects and findings, lives have been saved
and underserved populations have been treated. For example, women
treated in emergency rooms are less likely to receive life-saving
medication for a heart attack. AHRQ funded the development of two
software tools, now standard features on hospital electrocardiograph
machines, which have improved diagnostic accuracy and dramatically
increased the timely use of ``clot-dissolving'' medications in women
having heart attacks.
While AHRQ has made great strides in women's health research, the
Administration's budget for fiscal year 2009 could threaten such life-
saving research. While AHRQ's fiscal year 2008 budget received an $11
million increase, the President's proposed fiscal year 2009 budget
marks an almost $9 million decrease. With the cost of inflation and
years of flat funding, AHRQ has lost $19 million in purchasing power
since 2005. With the President's proposed budget of approximately $325
million, the agency stands to lose an additional $9 million. This
Agency has been operating under a major shortfall for years. Decreased
funding seriously jeopardizes the research and quality improvement
programs that Congress mandates from AHRQ. We encourage Congress to
fund AHRQ at $360 million for fiscal year 2009, an increase of $26
million over the fiscal year 2008 level. This will ensure that adequate
resources are available for high priority research, including women's
health care, sex and gender-based analyses, Medicare, and health
disparities.
In conclusion, Mr. Chairman, we thank you and this Committee for
its strong record of support for medical and health services research
and its unwavering commitment to the health of the Nation through its
support of peer-reviewed research. We look forward to continuing to
work with you to build a healthier future for all Americans.
______

Prepared Statement of the Spina Bifida Association

SUMMARY

The Spina Bifida Association (SBA) respectfully requests that the
Subcommittee provide the following allocations in fiscal year 2009 to
help improve quality-of-life for people with Spina Bifida:
--$7 million to the National Spina Bifida Program at the National
Center on Birth Defects and Developmental Disabilities at the
Centers for Disease Control and Prevention (CDC) to support
existing program initiatives and allow for the further
development of the National Spina Bifida Patient Registry.

BACKGROUND ON SPINA BIFIDA

On behalf of the more than 70,000 individuals and their families
who are affected by Spina Bifida--the Nation's most common, permanently
disabling birth defect--the SBA appreciates the opportunity to submit
written testimony for the record regarding fiscal year 2009 funding for
the National Spina Bifida Program and other related Spina Bifida
initiatives. SBA is the national voluntary health agency working on
behalf of people with Spina Bifida and their families through
education, advocacy, research and service. The Association was founded
in 1973 to address the needs of the Spina Bifida community and today
serves as the representative of 45 chapters serving more than 125
communities nationwide. SBA stands ready to work with Members of
Congress and other stakeholders to ensure our nation takes all the
steps necessary to reduce and prevent suffering from Spina Bifida.
Spina Bifida, a neural tube defect (NTD), occurs when the spinal
cord fails to close properly during the early stages of pregnancy,
typically within the first few weeks of pregnancy and most often before
the mother knows that she is pregnant. Over the course of the
pregnancy--as the fetus grows--the spinal cord is exposed to the
amniotic fluid which increasingly becomes toxic. It is believed that
the exposure of the spinal cord to the toxic amniotic fluid erodes the
spine and results in Spina Bifida. There are varying forms of Spina
Bifida occurring from mild--with little or no noticeable disability--to
severe--with limited movement and function. In addition, within each
different form of Spina Bifida the effects can vary widely.
Unfortunately, the most severe form of Spina Bifida occurs in 96
percent of children born with this birth defect.
The result of this neural tube defect is that most people with it
suffer from a host of physical, psychological, and educational
challenges--including paralysis, developmental delay, numerous
surgeries, and living with a shunt in their skulls which seeks to
ameliorate their condition by helping to relieve cranial pressure
associated with spinal fluid that does not flow properly. As we have
testified previously, the good news is that after decades of poor
prognoses and short life expectancy, children with Spina Bifida are now
living long enough to become adults with Spina Bifida. These gains in
longevity principally are due to breakthroughs in research, combined
with improvements generally in health care and treatment. However, with
this extended life expectancy, our nation and people with Spina Bifida
now face new challenges--education, job training, independent living,
health care for secondary conditions, aging concerns, among others.
Despite these gains, individuals and families affected by Spina Bifida
face many challenges--physical, emotional, and financial. Fortunately,
with the advent of the National Spina Bifida Program 4 years ago,
individuals and families affected by Spina Bifida now have a national
resource to provide them with the support, information, and assistance
they need and deserve.
While the consumption of 400 micrograms of folic acid daily prior
to becoming pregnant and throughout the first trimester of pregnancy,
can help reduce the incidence of Spina Bifida by up to 75 percent,
1,500 babies are born with Spina Bifida each year and our nation still
must take steps to ensure that the tens of thousands of individuals
living with Spina Bifida can live full, healthy, and productive lives.

COST OF SPINA BIFIDA

It is important to note that the lifetime costs associated with a
typical case of Spina Bifida--including medical care, special
education, therapy services, and loss of earnings--are as much as $1
million. The total societal cost of Spina Bifida is estimated to exceed
$750 million per year, with just the Social Security Administration
payments to individuals with Spina Bifida exceeding $82 million per
year. Moreover, tens of millions of dollars are spent on medical care
paid for by the Medicaid and Medicare Programs. Our nation must do more
to help reduce the emotional, financial, and physical toll of Spina
Bifida on the individuals and families affected. Efforts to reduce and
prevent suffering from Spina Bifida help to save money and save lives.

IMPROVING QUALITY-OF-LIFE THROUGH THE NATIONAL SPINA BIFIDA PROGRAM

SBA has worked with Members of Congress to ensure that our nation
is taking all the steps possible to prevent Spina Bifida and diminish
suffering for those currently living with this condition. With
appropriate, affordable, and high-quality medical, physical, and
emotional care, most people born with Spina Bifida likely will have a
normal or near normal life expectancy. The National Spina Bifida
Program at the CDC works on two critical levels--to reduce and prevent
Spina Bifida incidence and morbidity and to improve quality-of-life for
those living with Spina Bifida. The program seeks to ensure that what
is known by scientists is practiced and experienced by the 70,000
individuals and families affected by Spina Bifida. Moreover, the
National Spina Bifida Program works to improve the outlook for a life
challenged by this complicated birth defect--principally identifying
valuable therapies from in-utero throughout the lifespan and making
them available and accessible to those in need.
The National Spina Bifida Program serves as a national center for
information and support to help ensure that individuals, families, and
other caregivers, such as health professionals, have the most up-to-
date information about effective interventions for the myriad primary
and secondary conditions associated with Spina Bifida. Among many other
activities, the program helps individuals with Spina Bifida and their
families learn how to treat and prevent secondary health problems, such
as bladder and bowel control difficulties, learning disabilities,
depression, latex allergy, obesity, skin breakdown and social and
sexual issues. Children with Spina Bifida often have learning
disabilities and may have difficulty with paying attention, expressing
or understanding language, and grasping reading and math. All of these
problems can be treated or prevented, but only if those affected by
Spina Bifida--and their caregivers--are properly educated and taught
what they need to know to maintain the highest level of health and
well-being possible. The National Spina Bifida Program's secondary
prevention activities represent a tangible quality-of-life difference
to the 70,000 individuals living with Spina Bifida with the goal being
living well with Spina Bifida.
One way to increase research in Spina Bifida, improve quality and
save precious resources is to establish a patient registry for Spina
Bifida. Plans are underway to create the National Spina Bifida Patient
Registry intended to determine both the best practices clinically and
the cost effectiveness of treatment of Spina Bifida and the support the
creation of quality measures to improve care overall. It is only
through research towards improved care that we can truly save lives
while realizing a significant cost savings.
In fiscal year 2008, SBA requested $7 million be allocated to the
National Spina Bifida Program to support and expand the National Spina
Bifida Program. While the Senate version of the fiscal year 2008 LHHS
appropriations bill provided $5.5 million request, the fiscal year 2008
Continuing Appropriations Resolution provided just $5.198 million for
this program. SBA understands and appreciates that the Congress and the
nation face difficult budgetary challenges. However, the progress being
made by the National Spina Bifida Program must be sustained and
expanded to ensure that people with Spina Bifida--over the course of
their lifespan--have the support and access to quality care they need
and deserve. To that end, SBA advocates that Congress allocate $7
million in fiscal year 2009 to the National Spina Bifida Program it can
continue its current scope of the work and increase its folic acid
awareness and Spina Bifida prevention efforts, further develop the
National Spina Bifida Patient Registry, and sustain the National Spina
Bifida Clearinghouse and Resource Center. Increasing funding for the
National Spina Bifida Program will help ensure that our nation
continues to mount a comprehensive effort to prevent and reduce
suffering from Spina Bifida.

PREVENTING SPINA BIFIDA

While the exact cause of Spina Bifida is unknown, over the last
decade, medical research has confirmed a link between a woman's folate
level before pregnancy and the occurrence of Spina Bifida. Sixty-five
million women are at-risk of having a child born with Spina Bifida and
each year approximately 3,000 pregnancies in this country are affected
by Spina Bifida, resulting in 1,500 births. As mentioned above, the
consumption of 400 micrograms of folic acid daily prior to becoming
pregnant and throughout the first trimester of pregnancy can help
reduce incidence of Spina Bifida up to 75 percent. There are few public
health challenges that our nation can tackle and conquer by three-
fourths in such a straightforward fashion. However, we must still be
concerned with addressing the 25 percent of Spina Bifida cases that
cannot be prevented by folic acid consumption, as well as ensuring that
all women of childbearing age--particularly those most at-risk for a
Spina Bifida pregnancy--consume adequate amounts of folic acid prior to
becoming pregnant.
The good news is that progress has been made in convincing women of
the importance of folic acid consumption and the need to maintain a
diet rich in folic acid. Since 1968, the CDC has led the nation in
monitoring birth defects and developmental disabilities, linking these
health outcomes with maternal and/or environmental factors that
increase risk, and identifying effective means of reducing such risks.
This public health success should be celebrated, but it is only half of
the equation as approximately 3,000 pregnancies still are affected by
this devastating birth defect. The nation's public education campaign
around folic acid consumption must be enhanced and broadened to reach
segments of the population that have yet to heed this call--such an
investment will help ensure that as many cases of Spina Bifida can be
prevented as possible.
SBA is the managing agent for the National Council on Folic Acid, a
multi-sector partnership reaching over 100 million people a year with
the folic acid message. The goal is to increase awareness of the
benefits of folic acid, particular for those at elevated risk of having
a baby with neural tube defects (those who have Spina Bifida themselves
or those who have already conceived a baby with Spina Bifida). With
additional funding in fiscal year 2009 these activities could be
expanded to reach the broader population in need of these public health
education, health promotion, and disease prevention messages. SBA
advocates that Congress provide additional funding to CDC to allow for
a particular public health education and awareness focus on at-risk
populations (e.g. Hispanic-Latino communities) and health professionals
who can help disseminate information about the importance of folic acid
consumption among women of childbearing age.
In addition to a $7 million fiscal year 2009 allocation for the
National Spina Bifida Program, SBA urges the Subcommittee to provide
increased funding for the NCBDDD so the agency can enhance its programs
and initiatives to prevent birth defects and developmental disabilities
and promote health and wellness among people with disabilities.

IMPROVING HEALTH CARE FOR INDIVIDUALS WITH SPINA BIFIDA

The mission of the Agency for Healthcare Research and Quality
(AHRQ) is to improve the outcomes and quality of health care; reduce
its costs; improve patient safety; decrease medical errors; and broaden
access to essential health services. The work conducted by the agency
is vital to the evaluation of new treatments in order to ensure that
individuals and their families living with Spina Bifida continue to
receive the high quality health care that they need and deserve--SBA
urges the Subcommittee to provide $360 million to AHRQ so the agency
can continue to provide guidance to support the National Spina Bifida
Patient Registry.

SUSTAIN AND SEIZE SPINA BIFIDA RESEARCH OPPORTUNITIES

Our nation has benefited immensely from our past federal investment
in biomedical research at the National Institutes of Health (NIH). SBA
joins with the rest of the public health and research community in
advocating that NIH receive a 6.4 percent increase ($30.842 billion) in
fiscal year 2009. This funding will support applied and basic
biomedical, psychosocial, educational, and rehabilitative research to
improve the understanding of the etiology, prevention, cure and
treatment of Spina Bifida and its related conditions. In addition, SBA
requests that the Subcommittee include language in the report
accompanying the fiscal year 2009 LHHS measure to:
--Urge the National Institute of Child Health and Human Development
(NICHD)--expansion of its role--and support of--a more
comprehensive Spina Bifida research portfolio;
--Commend the National Institute of Diabetes and Digestive and Kidney
Diseases (NIDDK) for its interest in exploring issues related
to the neurogenic bladder and to encourage the institute to
forge ahead with its work in this important topic area; and
--Encourage the National Institute of Neurological Diseases and
Stroke (NINDS) to continue and expand its research related to
the treatment and management of hydrocephalus.

CONCLUSION

SBA stands ready to work with the Subcommittee and other Members of
Congress to advance policies that will reduce and prevent suffering
from Spina Bifida. Again, we thank you for the opportunity to present
our views on funding for programs that will improve the quality-of-life
for the 70,000 Americans and their families living with Spina Bifida
and stand ready to answer any questions you may have.
______

Prepared Statement of the State Association of Addition Services and
Legal Action Center

State Associations of Addiction Services (SAAS) and Legal Action
Center (LAC) appreciate the opportunity to submit testimony on fiscal
year 2009 funding for substance abuse prevention and addiction
treatment, recovery, and research programs. SAAS is a national
organization representing State provider associations and community-
based alcohol and drug abuse prevention and addiction treatment
programs in 44 States. The mission of SAAS is to ensure the
availability and accessibility of quality drug and alcohol treatment,
prevention, education, and research programs. LAC is a non-profit law
and policy organization that works to expand services for people with
alcohol and/or drug addictions, people living with HIV/AIDS, and people
with criminal records.

FIELD RECOMMENDATIONS FOR DRUG AND ALCOHOL PREVENTION, TREATMENT,
EDUCATION AND RESEARCH FUNDING FOR FISCAL YEAR 2009

In partnership with other prevention and treatment advocates, we
urge Congress to adopt the following funding levels in fiscal year 2009
for alcohol and drug prevention, treatment, recovery and research
programs in the Substance Abuse and Mental Health Services
Administration (SAMHSA), the Department of Education, and the National
Institutes of Health. These investments will provide desperately needed
services in communities across the country:
--$1.8587 billion for the Substance Abuse Prevention and Treatment
Block Grant
--$420 million for the Center for Substance Abuse Treatment (CSAT)
--$215 million for the Center for Substance Abuse Prevention (CSAP)
--$346.5 million for the Safe and Drug Free Schools and Communities
State Grants program
--$465.5 million for the National Institute on Alcohol Abuse and
Alcoholism (NIAAA)
--$1.0678 billion for the National Institute on Drug Abuse (NIDA)

CLOSING THE PREVENTION AND TREATMENT SERVICES GAP

According to SAMHSA, in 2006 23.6 million Americans, or 9.6 percent
of the population aged 12 or older, needed treatment for an illicit
drug or alcohol use problem. Of these, just 2.5 million individuals
received treatment at a specialty facility, leaving 21.2 million
persons in need of these life-saving services. Over forty percent of
those who tried to get help for their addiction were denied treatment
because of cost or insurance barriers. Such barriers mean that for many
people, Federal- and State-funded programs are the only means available
to obtain these critical services.

ADDICTION CAN BE PREVENTED AND TREATED WITH COST-EFFECTIVE SERVICES

Numerous studies have demonstrated the effectiveness of substance
abuse prevention and addiction treatment services in reducing alcohol
and drug addiction and use. Addictions treatment has been shown to cut
drug use in half, reduce crime by 80 percent and reduce arrests up to
64 percent. Addiction treatment is also sustainable; addictions
treatment is significantly associated with a 67 percent reduction in
weekly cocaine use, a 65 percent reduction in weekly heroin use, a 52
percent decrease in heavy alcohol use, a 61 percent reduction in
illegal activity, and a 46 percent decrease in suicidal ideation one
year post treatment. Moreover, these outcomes are generally stable for
the same clients five years post treatment.
Prevention activities and strategies have also been shown to be
effective in reducing alcohol and drug use and the risk of addiction,
and in effecting academic achievement. A recent University of
Washington study found that the level of peer substance use in schools
has a substantial impact on academic performance; students whose peers
avoided substance use had test scores that were on average 18 points
higher for reading, and 45 points higher for math. The Center for
Substance Abuse Prevention (CSAP) has identified numerous models of
prevention programs backed by research findings of effectiveness that
empower communities to meet their unique needs.
In addition to reducing drug use, treatment and prevention are
cost-effective. According to SAMHSA, for every dollar the U.S.
Government spends on addictions treatment it saves $7 to $25 in other
costs. A number of State studies have also demonstrated the cost-
effectiveness of treatment and prevention. One study found that in
Ohio, every $1 spent on addiction treatment saved $11 in other health
care costs. A Washington State study showed a 50 percent decrease in
all other medical expenses for those receiving treatment. In addition,
a Washington State study of school-based prevention programs found that
a number of these programs resulted in a $70.34 benefit for each dollar
of programming spent for each participating young person. These savings
resulted from increased productivity and reduced health care, criminal
justice, and social services costs.

FEDERAL FUNDING IS ESSENTIAL TO PREVENT SUBSTANCE ABUSE AND TREAT
ADDICTION

Programs that serve people with alcohol and drug addiction depend
nearly exclusively on public funds. According to SAMHSA's recent
National Expenditure Report, public funding provides the vast majority
of substance abuse expenditures, increasing from 62 percent in 1991 to
76 percent in 2001. Private insurance represented only 13 percent of
addiction treatment expenditures in 2001, while it covered 36 percent
of all health care expenditures. However, although the alcohol and drug
addiction treatment system relies heavily on public funds, an extremely
small percentage of health care spending is used for treatment. In
2001, of the $1.4 trillion spent on health care, an estimated $18
billion was devoted to treatment of alcohol and drug addiction,
constituting just 1.3 percent of all health care spending. In 1998, the
total economic costs of alcohol and drug addiction, including medical
consequences, lost earnings linked to premature death, lost
productivity, motor vehicle crashes, crime, and other social
consequences, were estimated at $328 billion. Expenditures on addiction
treatment grew 1.7 percentage points less than the growth rate of all
health care.
the continuum of drug and alcohol programming must be adequately funded
We urge Congress to improve access to, and the effectiveness of,
life-saving drug and alcohol services and research by increasing
support for the following programs:
$1.8587 billion for the Substance Abuse Prevention and Treatment Block
Grant
Funding for the Substance Abuse Prevention and Treatment (SAPT)
Block Grant, the foundation of the publicly supported prevention and
treatment system in this country, has been cut by over $20 million over
the past several years. As the cornerstone of the nation's prevention
and treatment system, the SAPT Block Grant must receive increased
funding in order to meet current demand and increase access to
services. SAMHSA's most recent data indicates that the SAPT Block Grant
serves nearly 2 million people every year, providing roughly half of
all public funding for treatment services. Over 10,500 community-based
organizations receive Block Grant funding from the States. The Block
Grant also provides crucial support for the States' prevention
programs, designating 20 percent of the total funding for this purpose.
In many local jurisdictions, individuals can wait long periods
before they are able to access appropriate drug and alcohol treatment.
This access problem is caused in part by the fact that private and
public insurance frequently do not cover the cost of treatment and
States face unprecedented financial pressures, making treatment funding
even more scarce and increasing the importance of the Block Grant.
Funding the full continuum of services is extremely difficult for many
jurisdictions given the limited amounts of funds that are available,
the pressures facing other funding streams, such as Medicaid, and the
restricted coverage provided by private insurance. Additional Block
Grant funding would help alleviate the pressure on services and provide
greater access to high-quality drug and alcohol prevention and
treatment services.
$420 million for the Center for Substance Abuse Treatment (CSAT)
Although the fiscal year 2009 proposes a $62.8 million cut to CSAT,
sustaining and increasing funding for CSAT programming is essential to
close the treatment gap. Funding for CSAT's Programs of Regional and
National Significance supports States and communities to carry out an
array of activities for service capacity expansion, service
improvements and other priority needs. These programs are critical in
order to ensure that what is learned about addiction through scientific
research is effectively shared with the treatment provider community.
In addition, funding for CSAT's Capacity category of programming that
support services that are tailored to address specific and emerging
drug epidemics and/or underserved populations, such as youth, pregnant
and parenting women, and communities of color must be strengthened.
Unfortunately, under the fiscal year 2009 budget, these programs would
be cut by $48.5 million from last year. These CSAT funds are critical
and enable States and regions dealing with emerging needs, such as
veterans returning home in need of essential addiction treatment
services, to appropriately address them. Another key program we urge
support for within CSAT is the Screening, Brief Intervention, and
Referral to Treatment (SBIRT) program which helps to link primary care
and emergency services providers with treatment programs.
We also support the innovative approaches that SAMHSA has developed
to expand the continuum of services offered and the range and capacity
of providers. Peer recovery support services, provided through CSAT's
Access to Recovery and Recovery Community Services Programs, are
integral to recovery-oriented systems of care. We support building on
these program's successes, including providing additional support for
recovery support services critical to helping individuals stay healthy
and drug-free.
$215 million for the Center for Substance Abuse Prevention (CSAP)
Addiction is a disease that begins in adolescence; young people who
start drinking before the age of 15 are five times more likely to have
alcohol problems later in life than those who begin drinking at age 21
or older. Research by the National Institute on Drug Abuse (NIDA) has
shown that if we can stop use and abuse before age 25, we will
significantly reduce the prevalence of addiction. Under the proposed
budget, CSAP would receive a cut of $36 million. Prevention efforts are
effective in deterring young people from using illicit drugs and
alcohol. We strongly support CSAP's Strategic Prevention Framework to
promote the use of performance measurement by providers, expand
collaboration across community agencies, and support implementation of
effective prevention programs at the State and community levels.
Unfortunately, the President's request would cut funding for this
critical program by $9.3 million. CSAP's Strategic Prevention Framework
is helping communities to promote youth development, reduce risk-taking
behaviors, build assets and resilience, and prevent problem behaviors
across the life span and needs increased funding to continue and to
expand its reach.
$346.5 million for the Safe and Drug Free Schools and Communities State
Grants program
The Safe and Drug Free Schools and Communities (SDFSC) State Grants
Program is the backbone of school-based prevention efforts in the
United States, and supports community-based prevention programming
throughout this country. According to recent data, upwards of 37
million youth are served annually by programs funded through SDFSC. The
SDFSC program has had a significant impact on helping to achieve the 17
percent overall decline in youth drug use over the past three years,
documented by the 2004 Monitoring the Future survey, and is having a
significant impact in many States. We strongly urge the subcommittee to
support this program and to protect its funding. The President's budget
proposes funding of $100 million for the SDFSC State Grants program, a
crippling cut of nearly $195 million. Cutting the SDFSC program will
leave millions of American children without any drug prevention
education.
$465.5 million for research at the National Institute on Alcohol Abuse
and Alcoholism (NIAAA) and $1.0678 billion at the National
Institute on Drug Abuse (NIDA)
Research into the causes, costs, treatment, and prevention of
alcoholism and drug addiction plays an essential role in improving the
quality of services. Increasing the support available for research on
drug and alcohol addiction would allow future research to focus on
additional effective prevention strategies, medications development,
and treatment and service delivery throughout the criminal justice
system.
NIAAA and NIDA are both taking steps to promote the transfer of new
research to practice, including collaboration with SAMHSA, State
agencies and providers. Over the past several years, NIDA has made
extraordinary scientific advances in understanding the nature of
addiction, such as those made through the use of imaging technologies
like PET scans, and through the development of the new treatment
technologies and medications. Additionally, NIDA's Criminal Justice
Drug Abuse Treatment Studies (CJ-DATS) research is designed to improve
outcomes for people with substance use disorders by improving the
integration of drug abuse treatment with other public health and public
safety systems. Research on addiction as a disease has been useful in
the development and testing of new science-based therapies. NIAAA also
has conducted breakthrough research that has improved clinical
practice, with much of this research focusing on the genetics,
neurobiology, and environmental factors that underlie alcohol
addiction. NIAAA also has sought to use new information about alcohol
use to promote education and an effective public health response to
this problem.

CONCLUSION

Our Nation is spending only a fraction of what is necessary to
prevent alcohol and drug abuse and treat addiction--a total of $18
billion from all sources of funds, compared to social and economic
costs estimated well in excess of $300 billion. Funding appropriated by
Congress is the critical foundation for prevention, treatment,
education, and research. We urge the Subcommittee to approve the
funding levels that we and other organizations in the field have
recommended. Thank you for your consideration.
______

Prepared Statement of the Susan G. Komen Cure Advocacy Alliance

Chairman Harkin, ranking member Specter, and members of the
subcommittee:
On behalf of the Susan G. Komen for the Cure Advocacy Alliance, I
would like to thank you for the opportunity to submit written testimony
regarding Federal funding to fight breast cancer. Specifically, I would
like to take this time to stress the importance of increased funding
for the National Institutes of Health (NIH), including the National
Cancer Institute (NCI), and the Centers for Disease Control and
Prevention (CDC), both of which play a critical role in finding and
delivering the cures for breast cancer. In addition, Komen for the Cure
supports full funding for the Patient Navigator Outreach and Chronic
Disease Prevention Act of 2005 administered by the Health Resources and
Services Administration. As the appropriations subcommittee with
jurisdiction over these agencies, we hope you will consider our
request.

BACKGROUND ON SUSAN G. KOMEN FOR THE CURE

Susan G. Komen for the Cure is the world's largest grassroots
network of breast cancer survivors and activists fighting to save
lives, empower people, ensure quality care for all and energize science
to find the cures. Thanks to events like the Komen Race for the Cure,
in its first 25 years, Komen for the Cure invested $1 billion to
fulfill its promise, becoming the largest source of nonprofit funds
dedicated to the fight against breast cancer in the world. To continue
this progress, Komen for the Cure has pledged to invest another $2
billion in the next 10 years. In 2007 alone, Komen for the Cure awarded
almost $70 million in community health grants for education, screening
and treatment, and more than $75 million in grants for cancer research.
And Komen is on track to award more than $100 million in research
grants this year. But while Komen has had a significant impact on
breakthrough research in breast cancer, we can't do it alone. Federal
funding for research must keep pace with biomedical inflation and the
ever-changing world of science.
In addition to grant-making, Komen has advocated tirelessly for
improved access to high quality care for breast cancer patients. We
have long been a champion of the National Breast and Cervical Cancer
Early Detection Program (NBCCEDP), and we successfully advocated for
the program's reauthorization last year. But again, we can't do it
alone. Successful programs such as the NBCCEDP must be fully funded to
allow all women access to the screening and treatment services they
deserve.

THE IMPORTANCE OF NIH AND NCI FUNDING

Komen for the Cure supports the One Voice Against Cancer (OVAC)
request of $30.81 billion for the NIH in fiscal year 2009. This
represents a 6.5 percent increase over the fiscal year 2008 budget. In
addition, Komen supports OVAC's request for a 9.5 percent increase in
funding for fiscal year 2009 for the NCI ($5.26 billion). The NCI
funding increase is based on the professional judgment budget (also
known as the ``by-pass'' budget) issued by the NCI and would provide
sufficient funding for continuing current services. It should be noted
that the appropriation given to the NCI by Congress has traditionally
met or exceeded the amount requested in the by-pass budget. Fiscal year
2006 marked the first year that the appropriation dipped below the by-
pass budget--we must reverse this trend. In addition, a 9.5 percent
increase provides the NCI only with enough resources to continue
current services. The Institute has stated that a 25 percent increase
would be needed to implement new initiatives. In this context, we
believe 9.5 percent is a reasonable request.
Previous investments in research have allowed us to make
significant progress toward discovering and delivering the cures for
breast cancer. During the ``doubling'' of the NIH budget from 1998-
2003, incredible advances were made in our understanding of the genetic
causes of cancer, how to disrupt the growth and spread of cancerous
cells without destroying healthy cells, and in the development of
diagnostic tools and treatments that can be tailored to an individual
or specific type of cancer based on genetic traits. Today, research
opportunities abound in both basic and translational settings,
including:
--Adult Stem Cell Research.--Some researchers believe that stem cells
(cells that give rise to all cells in the body) are the source
of at least some, and perhaps all, cancers. Breakthroughs in
adult stem cell research may allow us to develop more effective
treatments;
--RNA Interference.--A technology with the potential to turn off the
genes that make cancer grow;
--Nanotechnology.--Tiny particles can be coated with a special
material, and when introduced into the body, these particles
may be able to target and kill cancer cells from the inside
out;
--Gene Therapy.--In gene therapy, a specific gene can be transferred
into a patient's cancer cells to make them more responsive to
treatment. A gene can also be transferred into a patient's
immune system cells to make them better able to fight the
cancer;
--Anti-angiogenesis Drugs.--Anti-angiogenesis drugs work by
preventing tumors from developing new blood vessels, thereby
preventing growth of the tumor; and
--Targeted Therapies and Personalized Medicine.--An ever-expanding
list of targeted therapies is making breast cancer treatment
more specific and possibly less toxic.
However, many of these promising areas of research will not receive
funding if the NIH and the NCI continue to be under-funded. A recent
report by a group of concerned universities, ``A Broken Pipeline?: Flat
Funding of the NIH Puts a Generation of Science at Risk'' paints a grim
picture for the future of science. Only 24 percent of NIH R01 grants
(or equivalents) were funded in 2007, down from 32 percent in 1999.
Even worse, only 12 percent of grants were funded on the first
submission in 2007, compared to 29 percent in 1999. Scientists spend
more time writing than researching. For young investigators, the
success rate is particularly difficulty--1 in 4 NIH grants is awarded
to a first-time grantee. Persistent under-funding at the NIH is costing
us a generation of promising young scientists and untold missed
opportunities to find a cure for breast cancer. Opportunities we can't
recoup if we do not act now to reverse the downward trend in the NIH
budget.
One in eight women will be diagnosed with breast cancer in the
course of her lifetime. In 2008, more than 182,000 women will be
diagnosed with breast cancer and more than 40,000 women will die from
the disease. The burden of breast cancer, and of all cancers, remains
enormous. Cancer deaths account for one out of every four deaths in the
United States and cost our economy over $200 billion annually, and yet
we spend only $5 billion at NCI on oncology research. We owe it to all
of those affected by this disease, and to their families, friends and
loved ones, to adequately fund the NIH and the NCI so that we can find
a cure for cancer. We owe it to young investigators who have dedicated
their professional lives to cancer research to provide adequate federal
funding through the NIH and NCI so they can continue to make innovative
breakthroughs in science. And finally, we owe it to the United States,
as the global leader of biomedical research to continue to provide
increases in funding to the NIH.

THE CDC NATIONAL BREAST AND CERVICAL CANCER EARLY DETECTION PROGRAM

In addition to an increase in funding for NIH and NCI, Komen for
the Cure also requests that Congress appropriate $250 million for CDC's
National Breast and Cervical Cancer Early Detection Program (NBCCEDP).
The NBCCEDP is designed to reach underserved women to provide
screening services for breast and cervical cancer as well as
appropriate referrals for treatment and support services as necessary.
In addition to clinical services, NBCCEDP programs develop and
disseminate public information about the importance of screening,
improve the education, training and skills of health professionals in
the detection of breast and cervical cancer, engage in outreach efforts
to serve as many eligible women as possible, monitor and evaluate the
program, including the quality of screening services, and report
certain data to CDC. The heart of the program is to provide screening
services to low-income, uninsured, and underinsured women aged 18 to 64
with incomes under 250 percent of the Federal poverty level. The women
served are often in at-risk populations and those least likely to be
screened. According to the CDC, since 1991, the NBCCEDP has served more
than 3 million women by providing more than 7.2 million screening
examinations, and diagnosing 30,963 breast cancers, 1,934 invasive
cervical cancers, and 101,624 precursor cervical lesions.
The NBCCEDP is an invaluable service to women who are served by the
program. There is no cure for breast cancer. Without a cure, early
detection is key to survival. Timely mammography screening of women
over age 40 could prevent 15 to 30 percent of all deaths from breast
cancer--when breast cancer is detected early, while still confined to
the breast, the 5-year survival rate is more than 98 percent. However,
many low income women are uninsured or underinsured and would never
receive a mammogram without access to NBCCEDP services.
From a high of $210 million in fiscal year 2004, funding for the
NBCCEDP has either declined or remained essentially flat for the
subsequent years. In fiscal year 2008, the program received only
approximately $200 million, despite an authorization level of $225
million. Programs are severely strained by the lack of adequate
resources--only 14.7 percent of eligible women were screened for breast
cancer and only 6.7 percent of eligible women were screened for
cervical cancer in 2006. We urge Congress to fully fund NBCCEDP to
allow these programs to reach as many women as possible and save as
many lives as possible.

PATIENT NAVIGATORS

Finally, Komen for the Cure would like to offer support for full
funding ($6.5 million) for fiscal year 2009 for the Patient Navigator
Outreach and Chronic Disease Prevention Act of 2005 administered by the
Health Resources and Services Administration. The Act authorizes
appropriations of $2 million for fiscal year 2006, $5 million for
fiscal year 2007, $8 million for fiscal year 2008, $6.5 million for
fiscal year 2009, and $3.5 million for fiscal year 2010, however no
money has been appropriated to date.
Patient navigation services are critical to address barriers to
quality cancer care, particularly for minority and underserved patients
who often do not speak English, have low literacy skills, are
uninsured, and/or live long distances from treatment centers. These
patients have difficulty accessing quality care and have trouble
coordinating their cancer care, leading to disjointed treatment,
inadequate patient-doctor communication, difficulty with follow-up
appointments, and poor adherence to treatment regimens. Patient
navigators help patients ``navigate'' the maze of doctors, insurers and
patient support groups. For breast cancer patients, a patient navigator
can provide personalized education on breast surgery options,
chemotherapy, and radiation therapy, as well as facilitating
communication with physicians and other health professionals.
Komen for the Cure is committed to ensuring all breast cancer
patients have access to a patient navigator if they so desire. To this
end, we urge Congress to fully fund the Patient Navigator Outreach and
Chronic Disease Prevention Act at $6.5 million for fiscal year 2009.

FUNDING REQUESTS

Thank you for the opportunity to submit this written testimony. To
reiterate, our fiscal year 2009 funding requests are as follows:
--NIH.--$30.81 billion (6.5 percent increase over fiscal year 2008);
--NCI.--$5.26 billion (9.5 percent increase in over fiscal year
2008);
--CDC's National Breast and Cervical Cancer Program.--$250 million.
--Patient Navigator Outreach and Chronic Disease Prevention Act.--
$6.5 million.
______

Prepared Statement of Teanya Davis

MY FIBROMYALGIA

My name is Teanya Davis and I have Fibromyalgia. It has taken years
to, finally, get a diagnosis to explain what is wrong with me. To this
day, I don't understand why it took so long to reach that conclusion,
all the while, being made to feel ``it was all in my head''. The
following is my story, in hopes that it will help bring light to the
needed research and obvious help we, as sufferers, must have so that we
may lead as normal a life as possible with this dreaded syndrome.
Please, help us so we can, prayerfully, live a more fulfilling life for
our families and ourselves.
I'm going to try to explain what it's like for me to live with this
syndrome so that, hopefully, you will understand me better.
I have spent years (approx. 5) suffering with all kinds of pain and
different phenomenon going on with my body, yet, not understanding why.
In the same turn, have spent the same being told, or made to feel,
``it's all in my head'' and I'm a ``hypochondriac''. Being referred
from one specialist to another, finding little things here and there,
but no real answers to the big problems I've been plagued with. Some
even going so far as to look at my psychotropic med list and,
instantly, write me off as ``depressed''.
First of all, who wouldn't be depressed living with so much going
on with their bodies and feeling as though most were writing them off
as a hypochondriac, especially, their own family members? But think how
it would feel if you knew that, even though you were depressed, you
knew the pain wasn't caused from that; it was the other way around and,
yet, you couldn't get people to understand that.
Picture having blinding headaches (migraines) that hurt so bad, you
find yourself worrying when the next one will strike--a debilitating/
blinding pain that keeps you from being able to do anything but pray
for it to stop. It hurts so much you can't even cry, fearing your head
will explode so, lying motionless, awaiting precious sleep/
unconsciousness to take you away and pray you'll wake to less, or no
pain, if you're lucky.
Picture knowing that, when you walk, you must look like some kind
of clown because your hips have an unbearable ache and one of your legs
is forever threatening to give way, feeling as though you're a walking
slinky, on top of the further pain that spreads through your back and
legs.
Picture the ``simple'' task of merely sweeping your floor, with
every muscle in your body screaming in agony, as you try to remind
yourself, ``it has to be done'' and, ``this is not actually causing
physical damage, even though it feels like it's killing me''. And, at
the same time, you have to pry your hands open because the muscles have
painfully contracted and formed themselves around the broom handle, as
they do with about anything else, when held in position for any length
of time.
Picture yourself just standing and having a conversation with
someone when, all of a sudden, you get a stabbing pain in your lower
back that turns into a horrible ache, as you find your muscles are
pulling you in the wrong direction (like you're doing a backbend).
Picture the worst flu you've ever had and multiply it by 10, if not
more, and imagine someone telling you that the reason you're vomiting
has to be, ``because you must have gorged on a meal'' or, making you
feel guilty because you literally can't get out of bed, due to the
constant ache, fatigue, etc.
Picture yourself trying to do something as simple as sitting to
watch a movie and, in a split second, your legs get an almost
unbearable ache that's indescribable, and there's no way to relieve it,
except just wait for it to go away on it's own.
Picture being afraid of a mere hug from someone because it actually
hurts but, since you want to hug the person, you have to mentally
prepare yourself for the pain you know is coming. A simple act you say?
For you, yes; for me, I can only wish!
Picture being so exhausted that you could, literally, collapse
right where you stand, or even sit (yes, even sitting can hurt). Now,
think of having that exhaustion 24/7, while knowing at times it just
can't matter because there are things you have to do, no matter what's
going on with you, even when you feel like you could die and sometimes
wish it.
Picture feeling every kind of weird sensation that a body can
experience and knowing that there are days you are going to have them
all happen at once, or at least in a single day. Anything from twitches
that can be so strong, you actually see them; indescribable aches/
pains; itching for no reason, except that it feels there's a hair/
feathery-like feeling on your skin; shocking sensations that make you
feel like you could wet yourself; finding your hair actually hurts to
move it; stabbing, shooting, aching, prickling, tingling, shocking; a
really odd sensation I still don't understand when I find out it's from
the barometric pressure.
Picture talking to someone and feeling frustrated because you're
finding it hard to follow the conversation (not because you're
distracted); you can be looking right into the person's eyes and, all
of a sudden, it's like they might as well be speaking a foreign
language. Also, think of trying to say something and tripping over
every word, IF you can recall what you were saying in the first place,
or mid-sentence. Frustrating for both parties, no?
Picture having times when your chest hurts, in a way that feels
like you must be having a heart attack because it spreads through your
entire chest, up into your jaw, and down your left arm but you're
afraid to say anything, just in case it's not, but wondering if you'll
actually die, one of these days, from not knowing the difference.
Now, take all of the above, put them together, and you have my life
with fibromyalgia. Yes, I have other health, and emotional, problems
but have found this to be the most frustrating factor because there is
no ``fix''. Visualize yourself in my shoes. Even though I, finally,
have had a name put to the face of all this, I still feel I have a
constant battle, trying to get people to truly understand it. You may
say you do but, do you really? If so, why are you still taking it
personal when I say I can't go somewhere or do something that, at
first, I thought I would be able to do? Why are you still wondering why
I was able to do something one moment but not the next, as with days?
Why are you judging me, as though I'm being lazy or making things up,
``just to get out of things'', or making me out to be a hypochondriac?
I didn't ask to be this way! I hate not feeling well, disappointing
you, and feeling like a couch potato 90+ percent of the time, feeling
inadequate, etc. Please, understand the way I am physically is not the
way I am emotionally or psychologically! I need your prayers and
encouragement, not judgment or ridicule! The latter only makes me want
to withdraw into my own little world and brings more negative thoughts
I care to admit, or you'd want to know about. I ridicule myself enough
for everyone; I don't need that kind of help.
______

Prepared Statement of The AIDS Institute

The AIDS Institute, a national public policy research, advocacy,
and education organization, is pleased to comment in support of
critical HIV/AIDS and Hepatitis programs as part of the fiscal year
2009 Labor, Health and Human Services, Education and Related Agencies
appropriation measure. We thank you for your consistent support of
these programs and trust you will do your best to adequately fund them
in the future in order to provide for, and protect the health of many
Americans.

HIV/AIDS

HIV/AIDS remains one of the world's worst health pandemics in
history. Here in the United States, according to the CDC, 984,155
people have been diagnosed with AIDS, and 550,394 people have died. It
is estimated there are more than 40,000 new infections in the United
States each year, although this number may soon be revised to as high
as 55,000 to 60,000. At the end of 2005, an estimated 1.2 million
people in the United States were living with HIV/AIDS.
Persons of minority races and ethnicities are disproportionately
affected by HIV/AIDS. African Americans, who make up 12 percent of the
U.S. population, account for half of the HIV/AIDS cases. HIV/AIDS also
disproportionately affects the poor, and about 70 percent of those
infected rely on public health care financing.
The AIDS Institute, working in coalition with other AIDS
organizations, has developed funding request numbers for federally
funded AIDS programs. We ask you to do your best to adequately fund
them at the requested level.
We are keenly aware of budget constraints and competing interests
for limited dollars. Unfortunately, despite the growing need, several
domestic HIV/AIDS programs have experienced cuts in recent years
including HIV prevention funding at the CDC and some parts of the Ryan
White HIV/AIDS Program.
This year, the President has proposed to cut CDC HIV Prevention
even more, and increase Ryan White programs by a mere .004 percent,
while cutting some parts of the program. The AIDS Institute asks you to
reject these cuts and increase the entire program at the community
requested level. Below are the program requests and supporting
explanation by The AIDS Institute:

CENTERS FOR DISEASE CONTROL AND PREVENTION--HIV PREVENTION AND
SURVEILLANCE
[In millions of dollars]
------------------------------------------------------------------------
Fiscal year Amount
------------------------------------------------------------------------
2008....................................................... 692
2009 President's request................................... 691
2009 community request..................................... 1,300
------------------------------------------------------------------------

While the CDC has reported for many years the number of new HIV
infections in the United States is estimated to be 40,000 each year,
they have announced they will release new incidence numbers in the near
future in which, according to press reports, indicate the number is
more like 55,000 to 60,000. While the current numbers are enough to
cause alarm, the new estimates will hopefully convince Congress there
is a heightened immediate need for increased funding, rather than
additional cuts.
The increase in new infections is particularly occurring in certain
populations, such as the poor, African-Americans, men who have sex with
men, Latinos, substance users, and the incarcerated. In order to
address the specific needs of these populations, CDC is going to need
additional funding.
Investing in prevention today will save money tomorrow. Every case
of HIV that is prevented saves, on average, $1 million of lifetime
treatment costs for HIV. One recent study concluded the cost of new HIV
infections in the United States in 2002 was estimated at $36.4 billion,
including $6.7 billion in direct medical costs and $29.7 billion in
productivity losses. Another study concluded preventing the estimated
40,000 new HIV infections in the United States each year would avoid
obligating $12.1 billion annually in future medical costs.
Despite the savings of lives and costs that prevention provides,
the Congress cut the program by $3.5 million in fiscal year 2008 and
the Administration is proposing to cut it in fiscal year 2009 by
another $1 million. Cuts of greater magnitude have been occurring for
actual direct prevention programming while increases have gone for HIV
testing. Since one quarter of the over one million people living with
HIV in the United States are unaware of their HIV status, The AIDS
Institute supports increased testing programs. However, we do not
support funding these efforts at the expense of prevention intervention
programs.
The administration is also proposing $30 million to implement the
Early Diagnosis Grant Program. The AIDS Institute does not support this
request and urges that the money should be directed instead to CDC HIV/
AIDS prevention programs.

RYAN WHITE HIV/AIDS PROGRAMS
[In millions of dollars]
------------------------------------------------------------------------
Fiscal year Amount
------------------------------------------------------------------------
2008....................................................... 2,167
2009 President's request................................... 2,168
2009 community request..................................... 2,782
------------------------------------------------------------------------

The centerpiece of the government's response to caring and treating
low-income people with HIV/AIDS is the Ryan White HIV/AIDS Program.
Ryan White currently reaches over 531,000 low-income, uninsured, and
underinsured people each year.
In fiscal year 2008, the program overall received an increase of
$29 million, although some parts of it experienced cuts. The President
has proposed a .004 percent increase for Ryan White in fiscal year
2009, or only $1.1 million. The AIDS Institute urges you to reject this
budget proposal and instead provide substantial funding increases to
all parts of the Ryan White Program. Consider the following:
(1) Caseload levels are increasing. People are living longer due to
lifesaving medications; there are at least 40,000 new infections each
year; and increased testing programs, according to the CDC, will
identify 12,000 to 20,000 new people infected with HIV each year.
(2) The price of healthcare, including medications, is increasing
and State and local budgets are experiencing cutbacks due to the
economic downturn.
(3) There are significant numbers of people in the United States
who are not receiving life-saving AIDS medications. An IOM report
concluded that 233,069 people in the United States who know their HIV
status do not have continuous access to Highly Active Antiretroviral
Therapy. A CDC study concluded 212,000 or 44 percent of eligible people
living with HIV/AIDS, aged 15-49 in the United States, are not
receiving antiretroviral therapy.
Given these factors, cuts in funding or flat or minor increases are
unacceptable. Specifically, The AIDS Institute requests the following
funding levels for each part of the Program:
Part A provides medical care, and vital support services for
persons living with HIV/AIDS in the metropolitan areas most affected by
HIV/AIDS. We urge you to reject the President's proposed cut of $7.7
million and instead request an increase of $213 million, for a total of
$840 million.
Part B base provides essential services including diagnostic, viral
load testing and viral resistance monitoring and HIV care to all 50
states, DC, Puerto Rico and the territories. We are requesting a $95
million increase, for a total of $482 million.
The AIDS Drug Assistance Program (ADAP) provides life-saving HIV
drug treatment to over 100,000 people; the majority of whom are people
of color (60 percent) and very poor (80 percent are at or below 200
percent of the federal poverty level). Due to a lack of funding, states
have not been able to include all necessary drugs on their formularies,
have limited eligibility and capped enrollment. In order to address the
386 new ADAP clients each month and drug cost increases, we are
requesting an increase of $134.6 million for a total of $943.5 million.
Part C provides early medical intervention and other supportive
services to over 225,000 people at over 360 directly funded clinics. We
are requesting a $100.5 million increase, for a total of $299 million.
Part D provides care to over 53,000 women, children, youth and
families living with and affected by HIV/AIDS. This family-centered
care promotes better health, prevents mother-to-child transmission, and
brings hard-to-reach youth into care. We are requesting a $48.8 million
increase, for a total of $122.5 million.
Part F includes the AIDS Education and Training Centers (AETCs)
program and the Dental Reimbursement program. We are requesting a $15.9
million increase for the AETC program, for a total of $50 million, and
a $6 million increase for the Dental Reimbursement program, for a total
of $19 million.
The AIDS Institute supports increased funding for the Minority AIDS
Initiative (MAI). MAI funds services nationwide that address the
disproportionate impact that HIV has on communities of color.

NATIONAL INSTITUTES OF HEALTH--AIDS RESEARCH
[In billions of dollars]
------------------------------------------------------------------------
Fiscal year Amount
------------------------------------------------------------------------
2008...................................................... 2.9
2009 President's request.................................. 2.9
2009 community request.................................... 3.35
------------------------------------------------------------------------

Through the NIH, research is conducted to understand the AIDS virus
and its complicated mutations; discover new drug treatments; develop a
vaccine and other prevention programs such as microbicides; and
ultimately, a cure. The critically important work performed by the NIH
not only benefits those in the United States, but the entire world.
As neither a cure nor a vaccine exists, and patients continue to
build resistance to existing medications, additional research must
continue. NIH also conducts the necessary behavioral research to learn
how best HIV can be prevented in various affected communities. We ask
the committee to fund critical AIDS research at the community requested
level of $3.35 billion.

ADMINISTRATION FOR CHILDREN & FAMILIES: COMMUNITY BASED ABSTINENCE
EDUCATION

Efforts to improve prevention methods and weed out non-effective
programs should be a constant undertaking and be guided by science and
fact based decision-making. It is for these reasons The AIDS Institute
opposes abstinence-only-until-marriage programs, for which the
President requested a $28 million increase. While we support
abstinence-based prevention programs as part of a comprehensive
prevention message, there is no scientific proof that abstinence-only
programs are effective. On the contrary, they reject proven prevention
tools, such as condoms, and fail to address the needs of homosexuals,
who can not marry, and who remain greatly impacted by HIV/AIDS.

SUBSTANCE ABUSE AND MENTAL HEALTH SERVICES ADMINISTRATION

Many persons infected with HIV also experience drug abuse and/or
mental health problems, and require the programs funded by SAMHSA.
Given the growing need for services, we are disappointed by proposed
funding cuts at SAMHSA, including $63 million for the Center for
Substance Abuse Treatment, $36 million for the Center for Substance
Abuse Prevention, and $126 million for the Center for Mental Health
Services. We ask the Committee to reject these cuts, and adequately
fund these programs.

VIRAL HEPATITIS

Viral Hepatitis is an infectious disease that also deserves
increased attention by the federal government. According to the CDC,
there are an estimated 1.25 million Americans chronically infected with
Hepatitis B, and 60,000 new infections each year. Although there is no
cure, a vaccine is available, and a few treatment options are
available. An estimated 4.1 million (1.6 percent) Americans have been
infected with Hepatitis C, of whom 3.2 million are chronically
infected. Currently, there is no vaccine and very few treatment
options. It is believed that one-third of those infected with HIV are
co-infected with Hepatitis C.
Given these numbers, we are disappointed the administration is
calling for a decrease in funding for Hepatitis at the CDC. The program
is currently being funded at a level that is substantially less than
what it was funded in fiscal year 2003 and falls short of the $50
million that is needed. These funds are needed to establish a program
to lower the incidence of Hepatitis through education, outreach, and
surveillance.
The AIDS Institute asks that you give great weight to our testimony
and remember it as you deliberate over the fiscal year 2009
appropriation bill. Should you have any questions or comments, feel
free to contact Carl Schmid, Director of Federal Affairs, The AIDS
Institute, 1705 DeSales Street, Suite 700, Washington DC 20036, (202)
462-3042, [email protected]. Thank you very much.
______

Prepared Statement of the Trust for America's Health

Trust for America's Health (TFAH), a national non-profit,
nonpartisan organization dedicated to saving lives by protecting the
health of every community and working to make disease prevention a
national priority, is pleased to provide the subcommittee with the
following testimony.
Americans deserve a well-financed, modern, and accountable public
health system. As we worry about rising health care costs and continued
threats from terrorism or natural threats such as pandemic influenza,
resources for public health should be on the rise, not decreasing as
proposed in the President's fiscal year 2009 budget. Indeed, the
Centers for Disease Control and Prevention's (CDC) budget would be cut
by $433 million, or 7 percent. Almost every program that provides
support for prevention and public health at the State and local level
would be cut, continuing an alarming trend of disinvestment in the very
programs that save lives and reduce long-term health care costs.

CASE FOR SUPPORT

There is increasing evidence that community level interventions,
the kind of programs that CDC funding supports, make a difference in
health outcomes and health care costs. TFAH is leading a consensus
building initiative entitled, the Healthier America Project. One of the
central elements of the Project is to define the financing needs for
public health for the next decade. TFAH and the New York Academy of
Medicine have convened an expert panel to ascertain the current
spending levels by the public health sector. The panel will soon be
making a recommendation regarding how much additional funding the
United States should invest in public health. TFAH is also working with
the Urban Institute and Prevention Institute to develop an economic
model that demonstrates the return on investment of certain community-
level public health interventions, like physical activity, improved
nutrition, or smoking cessation programs, and the corresponding savings
by funding source. We hope the results of this model, to be released
later this spring, will influence your investment choices as you
consider the fiscal year 2009 budget. To help ensure the implementation
of effective community-based interventions, Trust for America's Health
supports increased funding for a number of programs.

CHRONIC DISEASES

Chronic diseases, most of which are preventable, account for 70
percent of deaths in the United States and approximately 75 percent of
health care spending. Yet the President's budget would cut funding for
chronic disease prevention and health promotion by over $28 million,
bringing cuts to over $100 million in inflation-adjusted dollars since
fiscal year 2003.
In the United States, two-thirds of adults are obese or overweight,
and the rate of childhood obesity has tripled over the last 20 years.
CDC's Division of Nutrition, Physical Activity and Obesity (DNPAO),
which provides funding that allows State health departments to develop
a nutrition and physical activity infrastructure, has been virtually
flat funded over the past 3 years, with only small increases that have
not kept pace with inflation. Similarly, funding levels for the
Division of Adolescent School Health (DASH) have actually decreased
over the last 5 years. DASH's School Health Program assists States in
improving the health of children through a school level program that
engages families and communities and develops healthy school
environments. To begin to mitigate the obesity epidemic, we need
chronic disease prevention and promotion programs in all 50 States.
That will require $65 million for the DNPAO and at least an additional
$20 million for DASH's School Health Program to fund all states that
have been approved. Another important anti-obesity program is Steps to
a Healthier United States. Steps grants support communities, cities and
tribal entities to implement health promotion programs and community
initiatives. TFAH supports at least $30 million for the Steps Program.

PREPARING FOR PUBLIC HEALTH EMERGENCIES

In December of last year, TFAH released its annual ``Ready or Not''
report on our Nation's preparedness. TFAH found significant improvement
in State preparedness over prior years. Unfortunately, there are many
areas, such as creating medical surge capacity, where we remain
woefully under-prepared. That is why we are concerned that the
diminished Federal support for an all-hazards approach to preparedness
will put the progress we have made at risk.
Funding for the Public Health Emergency Preparedness (PHEP)
Cooperative Agreements to States and localities--where public health
actually happens--has been drastically cut in recent years. With these
funds, local health departments have enhanced their disease
surveillance systems and trained their staff in emergency response.
Over 90 percent of local health departments have developed mass
vaccination and prophylaxis planning, conducted all-hazards
preparedness training, and implemented new or improved communication
systems. All States have established the infrastructure necessary to
evaluate urgent disease reports and to activate emergency response
operations 24 hours a day. A recent report by the National Association
of County and City Health Officials clearly detailed the impact of
recent cuts, with staff time, planning, and acquisitions of equipment
and supplies cut by upwards of 25 percent.
Unfortunately, the President's budget proposes another cut,
totaling 18 percent, as well as cuts of $62 million, or over 14
percent, to hospital preparedness funding due to a proposed realignment
of grant funding cycles. The primary focus of the Hospital Preparedness
Program (HPP) is to improve the capacity of the Nation's hospitals and
other supporting healthcare entities to respond to bioterrorist
attacks, infectious disease epidemics, and other large-scale
emergencies by enabling hospitals, EMS and health centers to plan a
coordinated response. TFAH recommends restoring funding for the PHEP
cooperative agreements to fiscal year 2005 levels ($919 million) and
providing $474 million for the HPP.
The President's budget proposes $250 million for the Biomedical
Advanced Research and Development Authority (BARDA). BARDA was
established to help jumpstart a new cycle of innovation in vaccines,
diagnostics and therapeutics to combat health threats. BARDA provides
incentives and guidance for research and development of products to
counter bioterrorism and pandemic flu and manages Project BioShield,
which includes the procurement and advanced development of medical
countermeasures for chemical, biological, radiological, and nuclear
agents. TFAH requests $500 million for BARDA, with 2 years of fiscal
availability.

PUBLIC HEALTH WORKFORCE

In order to prepare for any public health emergency, it is
necessary to have a well-trained workforce. The Office of the Civilian
Medical Reserve Corps, located in the Office of the Surgeon General,
supports local public health and helps provide for an adequate supply
of volunteers in the case of a public health emergency. MRC units are
community-based and serve as a way to locally organize and utilize
volunteers desiring to prepare for and respond to emergencies and
promote healthy living throughout the year. TFAH supports fully funding
the President's request of $15 million for the Office of the Civilian
Volunteer Medical Reserve Corps to enable the MRC to award more
capacity building grants, which local units use for a variety of
purposes, such as purchasing equipment, training, purchasing uniforms
and providing salaries for coordinators.
Public health epidemiologists are another important part of our
Nation's public health workforce. They investigate and monitor public
health threats, identify potential relationships between exposures and
disease, provide the foundations for public health interventions, and
help combat disease outbreaks. A 2006 national assessment of
epidemiologic capacity shows the number and level of training of
epidemiologists is perceived as seriously deficient in most States.
CDC's training fellowship program for epidemiologists can help expand
State capacity and provide future leadership in the field. TFAH
recommends providing $5 million for CDC's Office of Workforce and
Career Development to support 65 CDC/Council of State and Territorial
Epidemiology (CSTE) first year applied epidemiology fellows.

BOLSTERING THE NATION'S ABILITY TO DETECT AND CONTROL INFECTIOUS
DISEASES SUCH AS PANDEMIC INFLUENZA

Since 2003, scientists have become increasingly concerned that the
H5N1 strain of avian influenza could become more contagious among
humans and mutate into a strain against which humans have little or no
immunity. H5N1 has infected millions of birds and resulted in 235
deaths in humans, with a human case fatality rate of over 61 percent.
In November 2005, President Bush requested $7.1 billion over 3
years for emergency funding for pandemic influenza preparedness. In
fiscal year 2006, Congress appropriated $5.6 billion to the Department
of Health and Human Services (HHS) for emergency and agency funding for
pandemic preparedness. The funding has been used for stockpiling enough
antiviral drugs for the treatment of more than 50 million Americans,
licensing a pre-pandemic influenza vaccine, developing rapid
diagnostics and completing the sequencing of the entire genetic
blueprints of 2,250 human and avian influenza viruses.
To enhance our pandemic preparedness, TFAH recommends fully funding
the President's fiscal year 2009 request for $313 million for ongoing
pandemic preparedness activities at the CDC, National Institutes of
Health (NIH), Food and Drug Administration (FDA) and the Office of the
Secretary. TFAH also supports the President's request of $507 million
to be used to build vaccine production capacity, maintain a ready
supply of eggs for the production of vaccine, and enable HHS to
purchase medical countermeasures for its critical employees and
contractors, as well as the Indian Health Service population. The
administration has also requested that Congress fund the $870 million
requested by the President in fiscal year 2008 for one-time pandemic
preparedness activities, including acquiring vaccine, purchasing
antivirals, and accelerating research and development for rapid
diagnostic tests. TFAH supports this request.
The one major gap in pandemic preparedness not addressed in the
President's budget is funding for States and localities. In April, the
Department of Health and Human Services will release the final
installment of the $600 million appropriated in fiscal year 2006 for
State and local pandemic preparedness activities. This funding has been
used to conduct statewide pandemic influenza preparedness summits,
assess and address preparedness gaps, develop antiviral distribution
plans, review and update State pandemic plans, and conduct exercises at
the State and local levels, including mass vaccination using seasonal
flu clinics, school closures and medical surge. These are clearly not
one-time activities. We are concerned that these cuts will limit
States' ability to continue to conduct exercises. As a result, we urge
you to provide $350 million in recurring, annual funding for State and
local pandemic preparedness activities.

ENVIRONMENTAL HEALTH

One final area of interest for TFAH is the connection between our
environment and our health. For more than 30 years, the Environmental
Health Laboratory of the National Center for Environmental Health has
been performing biomonitoring measurements. Biomonitoring is the direct
measurement of people's exposure to toxic substances in the
environment. By analyzing blood, urine, and tissues, scientists can
measure actual levels of almost 300 chemicals in people's bodies, and
determine which population groups are at high risk for exposure and
adverse health effects, assess public health interventions, and monitor
exposure trends over time. Additional funds are needed to upgrade
facilities and equipment and to bolster the workforce. Of the suggested
$20 million increase, $10 million would be used to enhance State public
health laboratory biomonitoring capabilities, including upgrading
facilities and equipment and bolstering workforce capacity. The
remaining $10 million would be used to provide technical assistance and
training to States.
The Pew Commission on Environmental Health in 2000 recommended the
development of a Nationwide Health Tracking Network to help track
environmental hazards and the diseases they may cause. The Network
would coordinate and integrate local, State, and Federal health
agencies' collection of critical health and environmental data. Since
2002, Congress has provided funding for pilot programs, funding only 16
States and one city in fiscal year 2007, down from 24 grantees. Since
fiscal year 2002, tracking has led to 38 public health actions to
prevent or control potential adverse health effects from environmental
exposures. In fiscal year 2007, 17 public health actions were completed
based on information obtained from tracking. The Tracking Network is
scheduled to be launched in 2008. TFAH recommends providing $50 million
for CDC's Environmental and Health Outcome Tracking Network to expand
it to 22 new States and support the continued development of a
sustainable Network.
Mr. Chairman, thank you again for the opportunity to submit
testimony on the urgent need to enhance Federal funding for public
health programs which will save countless lives and protect our
communities and our Nation.
______

Prepared Statement of the United Tribes Technical College

For 39 years, United Tribes Technical College (UTTC) has provided
postsecondary career and technical education, job training and family
services to some of the most impoverished Indian students from
throughout the nation. We are governed by the five tribes located
wholly or in part in North Dakota. We have consistently had excellent
results, placing Indian people in good jobs and reducing welfare rolls.
The Perkins funds constitute about half of our operating budget and
provide for our core instructional programs. We do not have a tax base
or State-appropriated funds on which to rely. Our program is entirely
consistent with one of the stated goals of the U.S. Department of
Education's Strategic Plan: access to postsecondary education.
The request of the United Tribes Technical College Board is:
--$8.5 million or $1 million above the fiscal year 2008 enacted level
under Section 117 of the Carl Perkins Act. These funds are
shared by United Tribes Technical College and Navajo Community
College.
--$1 million from Title III of the Higher Education Act (HEA) to
continue the infrastructure development of our south campus.
Authorization.--Section 117 of the Carl Perkins Career and
Technical Education Act (20 U.S.C. section 2327) is the source of
authorization of Perkins funding for UTTC. Funding under this Act has
in recent years been distributed on a formula basis to UTTC and to
Navajo Technical College, neither of which receive funding under the
Tribally Controlled Colleges or Universities Act. Funds have been
authorized and appropriated by Congress for the program since fiscal
year 1991.
Administration Request.--Despite the explicit Congressional
authorization for Carl Perkins funding for section 117, and despite the
administration's requests for funding for section 117 in all previous
years, the administration has requested nothing for this program for
fiscal year 2009. This crass, outrageous and irresponsible cut, if
carried out, would irreparably harm Indian students who often have no
other chance for improving their lives but through UTTC and Navajo
Technical College. It represents a failure to understand our
educational mission, the nature of the populations we serve and
contradicts the Department of Education stated goal of access to
postsecondary education mentioned above.
Our students are disadvantaged in many ways. They often come from
impoverished backgrounds or broken families. They may be overcoming
extremely difficult personal circumstances as single parents. They
often lack the resources, both culturally and financially, to go to
other mainstream institutions. UTTC provides a set of family and
culturally-based campus services, including: an elementary school for
the children of students, housing, day care, a health clinic, a
wellness center, several on-campus job programs, student government,
counseling, services relating to drug and alcohol abuse and job
placement programs that enable our students to start on the road to
realizing their potential.
The administration states that UTTC has other sources of funding to
carry out its mission. This is not correct. Our present Perkins and
Bureau of Indian Education funds (also cut entirely from the
President's fiscal year 2009 budget) provide for nearly all of our core
postsecondary educational programs. Almost none of the other funds we
receive can be used for core career and technical educational programs;
they are supplemental and help us provide the services our students
need to be successful. Moreover, these other programs are competitive,
which means we have no guarantee that such funds will be available to
us in the future. We cannot continue operating without Perkins funds.
Core Perkins Funding.--Below are some important facts about United
Tribes Technical College which supports our request for $8.5 million
under the Perkins Act.
UTTC Performance Indicators. UTTC has:
--An 81 percent retention rate
--A placement rate of 94 percent (job placement and going on to 4-
year institutions)
--A projected return on Federal investment of 20-to-1 (2005 study
comparing the projected earnings generated over a 28-year
period of UTTC Associate of Applied Science and Bachelor degree
graduates of June 2005 with the cost of educating them.)
--The highest level of accreditation. The North Central Association
of Colleges and Schools has accredited UTTC again in 2001 for
the longest period of time allowable--10 years or until 2011--
and with no stipulations. We are also the only tribal college
accredited to offer accredited on-line (Internet based)
associate degrees.
--More than 20 percent of our students now go on to 4-year or
advanced degree institutions.
The Demand for our Services is Growing and we are Serving More
Students.--For the 2007-2008 year we enrolled 1,122 students (an
unduplicated count), nearly four times the number served just 6 years
ago. Most of our students are from the Great Plains, where the Indian
reservations have a jobless rate of 76 percent (Source: 2003 BIA Labor
Force Report), along with increasing populations. The need for our
services will continue to increase at least for the next 5 to 10 years.
In addition, we are serving 248 students during school year 2007-
2008 in our Theodore Jamerson Elementary school and 252 children, birth
to 5, are being served in our child development centers.
UTTC Course Offerings and Partnerships With Other Educational
Institutions.--We offer 15 vocational/technical programs and award a
total of 15 2-year degrees (Associate of Applied Science (AAS)) and (6)
1-year certificates, as well as a 4-year degree in elementary education
in cooperation with Sinte Gleska University in South Dakota. We are
accredited by the North Central Association of Colleges and Schools for
the longest accrediting period provided of 10 years.
Licensed Practical Nursing.--This program has one of the highest
enrollments at UTTC and results in the greatest demand for our
graduates. Our students have the ability to transfer their UTTC credits
to the North Dakota higher educational system to pursue a 4-year
nursing degree.
Medical Transcription and Coding Certificate Program.--This program
provides training in transcribing medical records into properly coded
digital documents. It is offered through the college's Exact Med
Training program and is supported by Department of Labor funds.
Tribal Environmental Science.--Our Tribal Environmental Science
program is supported by a National Science Foundation Tribal College
and Universities Program grant. This 5-year project allows students to
obtain a 2-year AAS degree in Tribal Environmental Science.
Community Health/Injury Prevention.--Through our Community Health/
Injury Prevention Program we are addressing the injury death rate among
Indians, which is 2.8 times that of the U.S. population, the leading
cause of death among Native Americans ages 1-44, and the third leading
cause of death overall. This program has in the past been supported by
the Indian Health Service, and is the only degree-granting Injury
Prevention program in the nation.
Online Education.--We are continuing to create increased
opportunities for education by providing web-based and Interactive
Video Network courses from our North Dakota campus to American Indians
residing at other remote sites as well as to students on our campus.
Online courses provide the scheduling flexibility students need,
especially those students with young children.
We offer online fully accredited degree programs in the areas of
Early Childhood Education, Community Health/Injury Prevention, Health
Information Technology, Nutrition and Food Service and Elementary
Education. Over 50 courses are currently offered online, including
those in the Medical Transcription and Coding program. We presently
have 59 online students.
Another significant online course is suicidology--the study of
suicide: its causes, prevention and the behavior of those who threaten
or attempt suicide. Suicide in Indian country dramatically affects our
communities, particularly our youth. According to the IHS, suicide
rates in Indian Country are 6-8 times the national rate.
We also provide an online Indian Country Environmental Hazard
Assessment program, offered through the Environmental Protection
Agency. This is a training course designed to help mitigate
environmental hazards in reservation communities.
Computer Information Technology.--This program is at maximum
student capacity because of limitations on resources for computer
instruction. In order to keep up with student demand and the latest
technology, we need more classrooms, equipment and instructors. We
provide all of the Microsoft Systems certifications that translate into
higher income earning potential for graduates.
Nutrition and Food Services.--UTTC helps meet the challenge of
fighting diabetes in Indian Country through education. Indians and
Alaska Natives have a disproportionately high rate of type 2 diabetes,
and have a diabetes mortality rate that is three times higher than the
general U.S. population. The increase in diabetes among Indians and
Alaska Natives is most prevalent among young adults aged 25-34, with a
160 percent increase from 1990-2004. (Source: fiscal year 2009 Indian
Health Service Budget Justification).
As a 1994 Tribal Land Grant institution, we offer a Nutrition and
Food Services AAS degree in order to increase the number of Indians
with expertise in nutrition and dietetics. Currently, there are very
few Indian professionals in the country with training in these areas.
Our degree places a strong emphasis on diabetes education, traditional
food preparation, and food safety.
We have also established the United Tribes Diabetes Education
Center that assists local tribal communities, our students and staff to
decrease the prevalence of diabetes by providing educational programs,
training and materials. We publish and make available tribal food
guides to our on-campus community and to tribes.
Business Management/Tribal Management.--Another critical program
for Indian country is business and tribal management. This program is
designed to help tribal leaders be more effective administrators and
entrepreneurs. As with all our programs, curriculum is constantly being
updated.
Job Training and Economic Development.--UTTC continues to provide
economic development opportunities for many tribes. We are a designated
Minority Business Development Center serving South and North Dakota. We
administer a Workforce Investment Act program and an internship program
with private employers in the region.
South Campus Infrastructure Development.--The bulk of our current
educational training and student housing is provided in 100 year old
buildings, part of a former military base used by UTTC since its
founding in 1969 and donated to us by the United States in 1973. They
are very expensive to maintain, do not meet modern construction and
electrical code requirements, are not generally ADA compliant, and
cannot be retrofitted to be energy efficient.
As a result, UTTC has developed plans for serving more students in
new facilities that will provide training and services to meet future
needs. These plans include the development of infrastructure on
adjacent land purchased with a donation that will become our south
campus. We have received some funds for this project and have the plans
in place. We are asking for an additional $1 million in fiscal year
2009 from Title III of the HEA to be able to continue this work.
Our vision for the south campus is to serve up to 5,000 students.
We expect that funding for the entire project will come from Federal,
State, tribal, and private sources. Aside from student housing, the
first building will be a combined science and administration building.
We cannot survive without the core career and technical education
funds that come through the Department of Education. These funds are
essential to the operation of our campus. Our programs at UTTC continue
to be critical and relevant to the welfare of Indian people throughout
the Great Plains region and beyond. Thank you for your consideration of
our request.