- DEPARTMENTS OF LABOR, HEALTH AND HUMAN SERVICES, AND EDUCATION, AND RELATED AGENCIES APPROPRIATIONS FOR FISCAL YEAR 2004

[Senate Hearing 108-218]
[From the U.S. Government Publishing Office]

DEPARTMENTS OF LABOR, HEALTH AND HUMAN SERVICES, AND EDUCATION, AND
RELATED AGENCIES APPROPRIATIONS FOR FISCAL YEAR 2004

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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:]

DEPARTMENT OF HEALTH AND HUMAN SERVICES

Prepared Statement of the Blue Cross and Blue Shield Association
The Blue Cross and Blue Shield Association (BCBSA), which
represents 42 independent, locally operated Blue Cross and Blue Shield
Plans throughout the nation, is pleased to submit written testimony to
the subcommittee on fiscal year 2004 funding for Medicare contractors.
Blue Cross and Blue Shield Plans play a leading role in
administering the Medicare program. Many Plans contract with the
federal government to run much of the daily work of paying Medicare
claims accurately and timely. Blue Cross and Blue Shield Plans serve as
Part A Fiscal Intermediaries (FIs) and/or Part B carriers and
collectively process most Medicare claims.
This testimony focuses on three areas:
Background, including a description of Medicare contractor
functions;
Current financial challenges facing Medicare contractors; and
BCBSA recommendations for Medicare contractor fiscal year 2004
funding.

BACKGROUND

Blue Cross and Blue Shield Medicare contractors are proud of their
role as Medicare administrators. While workloads have soared, operating
costs--on a unit cost basis--have declined about two-thirds from 1975
to 2003. In fact, contractors' administrative costs represent less than
1 percent of total Medicare benefits.
Medicare contractors have four major areas of responsibility:
Paying Claims.--Medicare contractors process all the bills for the
traditional Medicare fee-for-service program. In fiscal year 2004, it
is estimated that contractors will process over one billion claims,
more than 3.8 million every working day.
Providing Beneficiary and Provider Customer Services.--Contractors
are the main points of routine contact with Medicare for both
beneficiaries and providers. Contractors educate beneficiaries and
providers about Medicare and respond to over 40 million inquiries
annually.
Handling Hearings and Appeals.--Beneficiaries and providers are
entitled by law to appeal the initial payment determination made by
carriers and FIs. These contractors handle nearly 8 million annual
hearings and appeals.
Special Initiatives to Fight Medicare Fraud, Waste, and Abuse.--All
contractors have separate fraud and abuse departments dedicated to
assuring that Medicare payments are made properly. Few government
expenditures produce the documented, tangible savings of taxpayers'
dollars generated by Medicare anti-fraud and abuse activities. For
every $1 spent fighting fraud and abuse, Medicare contractors save the
government $14.

CURRENT FINANCIAL CHALLENGES

Of utmost importance to attaining outstanding performance is an
adequate budget. However, Medicare contractors have been severely
underfunded since the early 1990's. Reductions in funding concurrent
with increases in workload have seriously eroded contractors' ability
to fight fraud and abuse and ensure the accuracy and appropriateness of
Medicare payments. Between 1989 and 2002, the number of Medicare claims
climbed over 70 percent to nearly 1 billion, while payment review
resources grew less than 11 percent. As a result, the amount allocated
to contractors to review claims shrank. Because of the significant cost
of reviewing claims, this decline in funding resulted in CMS directing
contractors to reduce the percentage of claims that were scrutinized
and investigated. Similarly, the percentage of cost reports audited
declined--between 1991 and 1996, the chances that any institutional
provider's cost report would be reviewed in detail fell from about 1 in
6 to about 1 in 13.
The Medicare Integrity Program (MIP) created by Congress in 1996 as
part of the Health Insurance Portability and Accountability Act (HIPAA)
provided a permanent, stable funding authority for the portion of the
Medicare contractor budget that is explicitly designated as fraud and
abuse detection activities. MIP funding was set at $500 million in 1998
and rose to $720 million in fiscal year 2003. However, the permanent
authorization is now capped at $720 million despite continuing
increases in claims volume (11 percent increase in claims is projected
in fiscal year 2004).
BCBSA supports the authorized funding mechanism for MIP and urges
Congress to extend funding increases beyond fiscal year 2003 so that
Medicare contractors can continue important activities to reduce the
amount of fraud, waste, and abuse in the Medicare program and ensure
accuracy of Medicare payments.
Contractors' enhanced anti-fraud and abuse efforts due to MIP
funding contributed to the significant decline in improper claims and
deficient documentation submitted by providers. The OIG audit of fiscal
year 2002 claims estimated that improper Medicare payments had dropped
to $13.3 billion, or about 6.3 percent of the $217.7 billion in
Medicare payments. The fiscal year 2002 improper payment rate is the
lowest to date and less than half of the 13.8 percent reported in
fiscal year 1996.
But, the creation of MIP did not solve the budget problems for the
remainder of the contractor budget. The largest portion of the
contractor budget--Medicare operations--continues to face severe
funding pressures. Medicare operations activities include claims
processing, beneficiary and provider education and communications,
hearings and appeals of claims initially denied, and systems
maintenance and security.
CMS and its Medicare contractors have been severely underfunded for
years. The problem has been more acute since passage of HIPAA and
subsequent legislation placing additional responsibilities with
insufficient resources to perform these new duties. For example,
between 1992-2002 Medicare benefits outlays increased 97 percent;
claims volume increased 50 percent; yet Medicare operations funding
increased a mere 26 percent. Contractors staffing only increased by 6
percent during this time even though many new responsibilities were
added and claims volume continued to rise. Clearly funding has not kept
pace with additional work.
Whenever possible, contractors respond to reduced funding by
achieving significant efficiencies in claims processing, but it has not
been enough to keep pace with rising Medicare claims volume and
diminishing funding levels. Earlier this year in the absence of
appropriated funding contractors were instructed to reduce provider and
beneficiary service and offer minimum outreach activities. Since paying
claims is a top priority, funds were shifted from other important
activities. For example discretionary outreach activities such as
mailings to beneficiaries and onsite workshops about benefits and
availability of services were curtailed. Provider call quality
monitoring activities and in-person training services were reduced.
Funding levels also are entirely inadequate to conduct the necessary
provider outreach to ensure providers are compliant with the HIPAA
electronic transactions and code sets by October 16, 2003.
Inadequate budgets for Medicare operations also impact Medicare's
fight against fraud and abuse. While many think of Medicare operations
activities as simply paying claims, these activities are Medicare's
first line of defense against fraud and abuse and are critically linked
to MIP activities. As an example, many of the front-end computer edits
(e.g., preventing duplicate payments and detecting inaccurately coded
claims or claims requiring additional screening) are funded through
Medicare operations. Inadequate funding impacts different functions at
different times, but always disrupts the integration of all the
functional components needed to ``get things right the first time.'' It
thus results in inefficiency and higher costs.
bcbsa fiscal year 2004 funding recommendations for medicare contractors
BCBSA is pleased that many Members of this subcommittee recognize
the need for adequate administrative resources at CMS. We are concerned
the Administration's fiscal year 2004 budget does not appropriately
reflect the expected costs to cover Medicare workloads and it relies on
a proposal for $201 million in new user fees from providers. BCBSA
urges Congress to take the following steps to allow Medicare
Contractors to meet increased workloads as well as beneficiary and
provider needs:

Increase Medicare Contractor Medicare Operations Funding to $1,835
Million for Fiscal Year 2004
Medicare contractors continue to face significant increases in
Medicare claims volume. Further reductions in administrative costs, as
proposed in the President's budget, would seriously jeopardize
contractors' ability to administer Medicare. BCBSA recommends:

Provider Education and Training (PET) Funding be Restored
The President's budget would eviscerate funding for PET from $41.5
million in 2003 to $6.5 million requested for 2004--an 85 percent cut.
CMS indicates $30 million will be provided for PET through the MIP
program. However this transfer would mean that even fewer claims are
reviewed, jeopardizing efforts to safeguard the trust fund. With CMS
issuing 172 Medicare program changes in the first quarter of fiscal
year 2003, it is critical that contractors have resources to educate
providers on constant changes. Further, based on current costs, BCBSA
estimates the total annual cost to educate and train providers for
fiscal year 2003 will approximate $74 million. If CMS is to meet its
goal of reducing the error rate--currently at 6.3 percent--to 4.8
percent in fiscal year 2004, $30 million additional funding is
necessary.

Claims Processing Funding Must be Maintained to Handle
HIPAA Implementation
The President's budget would decrease claims processing costs by
$0.02 per claim under the assumption that HIPAA electronic
transactions, effective October 2003, will lower costs. Contractor data
show HIPAA is likely to cost more, not less, particularly since many
providers are not likely to be compliant by the deadline. This will
likely result in an increase in more costly paper claims submission and
could require contractors to maintain parallel systems. Further, the
HIPAA transactions rule is unlikely to result in contractor savings as
current Medicare electronic claims submission rates are already
extremely high--98 percent of Medicare Part A and 84 percent of
Medicare Part B. CMS currently provides contractors with higher unit
costs for processing claims due to increased claims volume. There is
every indication that claims volume will continue to exceed estimates,
putting additional pressure on the cost of processing claims.
Therefore, the current unit costs for processing Medicare claims must
be maintained, requiring an additional $22 million.

Systems Security Funding Must be Enhanced
The President's budget would substantially reduce funding for
critical activities such as systems maintenance, security and CMS
operations. Adequate funding is imperative to ensure software is
updated, new applications are tested, systems are secure, provider
toll-free lines are staffed, and provider bills are appropriately paid.
BCBSA recommends an additional $6 million for these important
activities.

Increase Medicare Integrity Program (MIP) Funding to $740 Million
MIP anti-fraud and abuse funding must be increased by a minimum of
$20 million to keep pace with rising workloads, which are projected to
increase 11 percent in 2004. The President's budget does not provide
any increased funding for MIP and in fact diverts $30 million even
though HHS data shows $14:1 return on the investment. Inadequate
funding will curtail important activities such as medical review and
Medicare secondary payer activities--both of which significantly
contribute to program savings and recoveries.
As the fiscal year 2004 Labor/HHS/Education appropriations process
begins, we urge Congress to fund Medicare contractor as follows:

MEDICARE CONTRACTOR BUDGET
[In millions of dollars]
----------------------------------------------------------------------------------------------------------------
Administration BCBSA fiscal year
Fiscal year 2003 fiscal year 2004 2004
recommendation recommendation
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Medicare Operations..................................... 1,748.0 1,777.0 1,835.0
=======================================================
Medicare Contractor Ongoing Activities.............. 1,128.0 1,184.0 1,235.0 (+52)
Systems Maintenance................................. 85.0 72.1 78.1 (+6)
CMS Operations...................................... 103.0 82.6 82.6
Enterprise Activities............................... 59.0 53.0 53.0
Legislative Mandates................................ 343.0 354.0 354.0
Program Improvements................................ 19.0 17.3 17.3
Information Technology Infrastructure Plan.......... 11.0 14.0 14.0
-------------------------------------------------------
Total, Medicare Operations........................ 1,748.0 1,777.0 1,835.0 (+58)
-------------------------------------------------------
Medicare Integrity Program.............................. 720.0 720.0 740.0
-------------------------------------------------------
Total Contractor Budget........................... 2,468.0 2,497.0 2,575.0
----------------------------------------------------------------------------------------------------------------

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Prepared Statement of the American Academy of Family Physicians

The 94,300 member American Academy of Family Physician submits the
following statement for the record on three issues of critical
importance to family physicians in the United States: (1) funding for
family medicine training in Section 747 of the Public Health Service
Act; (2) funding for the Agency for Healthcare Research and Quality
(AHRQ); and (3) funding for rural health programs. We deeply appreciate
the level of funding provided for the Title VII Health Professions
Programs for fiscal year 2003 during a challenging appropriations
process.

FAMILY MEDICINE TRAINING PROGRAMS

Recommendation
The Academy continues to support appropriations of $169 million for
Section 747 of Title VII of the Public Health Service Act for fiscal
year 2004.--Section 747 authorizes the Primary Care and Dentistry
cluster, which includes support for family medicine, general internal
medicine and general pediatrics, physician assistants and general and
pediatric dentistry. This figure includes $96 million for family
medicine programs and is the result of consultation between the groups
receiving funding under this cluster.

President's Budget Request for Fiscal Year 2004 Zeros Out Primary Care
Funding
As you know, the President's budget once again zeroes out funding
for the Primary Care Medicine and Dentistry cluster. In addition, the
Administration proposal includes only $11 million for all Title VII
Health Professions programs, which is the same request made last year.
Fiscal year 2003 spending levels for Title VII were $295 million.
Funding is directed only to ``increasing diversity in the health
professions and nursing workforce.'' The proposal continues, ``The
fiscal year 2004 budget continues the policy of not funding more
general training efforts--primary care, interdisciplinary community
projects, training for diversity and public health.''

What Does Title VII Do?
Section 747 is the only program at the federal level that supports
family medicine training programs at both the undergraduate and
graduate level. It is designed to increase both the number of primary
care physicians and the number of individuals who will provide health
care to the underserved. The program has succeeded in achieving its
goals and Congress should support it at higher funding levels.

Title VII Meets Its Goals: Grants Increase the Number of Primary Care
Physicians
Due to Section 747 funding, thousands of physicians are making
career choices to go into primary care and family medicine and to serve
millions of patients.
A study by the Robert Graham Center for Policy Studies showed that
medical schools that received Section 747 family medicine funds
produced more medical students who practiced ultimately:
--in family medicine or primary care (family physicians, general
practitioners, general internists or general pediatricians);
--in a rural area; or
--in a whole county Primary Care Health Professions Shortage Area
(those counties with inadequate numbers of family physicians,
general pediatricians, general internists or obstetrician/
gynecologists).
Sustained funding during the years of medical school training had
more positive impact than intermittent funding.
Loss of Grant Funding Would Hurt the Underserved
Without family physicians, counties around the United States would
not receive essential primary care services.--Another study by the
Robert Graham Center showed that the United States relies on family
physicians more than any other physician specialty. Specifically, the
study looked at counties designated as Primary Care Health Professions
Shortage Areas (HPSAs).
Of the 3,142 counties in the United States, 1,189 (63 percent) are
designated full or partial county HPSAs, meaning that the desired ratio
of one primary care physician to 3,500 people is not met. If family
physicians are removed or choose to remove themselves from the system,
the large majority of U.S. counties would become full or partial county
HPSAs.
In addition, an article in The Journal of Rural Health found that
Title VII funding is key to ending HPSAs. According to the study,
without this funding, not only would HPSAs not be eliminated, but the
number of shortage areas would continue to grow. In addition, the
article states that Title VII funding has cut to 15 years the time
needed to eliminate all HPSAs. Doubling the funding for these programs
would decrease the time for HPSA elimination to as little as 6 years
(Robert M. Politzer, ScD, et al., Winter, 1999). It is clear that
underserved populations, particularly in rural areas, depend on the
care that family physicians provide.

Proposed OMB Performance Measures Need to Be Redefined
The performance measures proposed recently by the Office of
Management and Budget to gauge effectiveness are neither measurable nor
appropriate. Consequently, assessments based on these conclusions are
highly flawed.
For example, the target set for the proportion of underrepresented
minorities (URMs) and disadvantaged students in health professions
funded programs is set at 40 percent for 2004. This is the target
although only 12.5 percent of current medical school graduates are
URMs, and data on disadvantaged backgrounds is not routinely, or even
accurately, collected. The concept of disadvantaged background varies
based on income related to family size, or is based on a vague, non-
quantifiable notion of persons growing up in environments that do not
prepare them to enter health professions schools.
For all of the health professions, minority representation has
risen from 8.3 percent in 1985 to 11.7 percent in 2000. Given this
data, it is simply unrealistic to expect a health professions program
to increase its minority representation in one year to 40 percent.

Future Funding Priorities
ACTPCMD's report to Congress lays out priorities for training
primary care providers. If additional funds are made available, Title
VII dollars could enhance current training, allowing the program to be
even more effective at providing:
--high-quality health care for underserved populations
--culturally competent care
--continued demonstration authority to address emerging health
initiatives
--additional interdisciplinary learning opportunities
--better quality of health care, eliminating health disparities, and
improving patient safety

Primary Care Training Programs React Quickly to Emerging Health
Challenges
Title VII dollars have created an infrastructure that allows
educational programs to respond to contemporary health care issues.
Specifically, the ACTPCMD report states that:

``Investment in education to provide primary care has effects that
touch the largest number of people in the country. No other group of
health care providers can exert such a broad influence on the kind and
quality of health care in the United States. Primary care training
programs are ideally positioned to react quickly to meet ever-changing
health care needs and issues, whether they are related to HIV/AIDS,
growing numbers of elderly with chronic illnesses, implications of the
modern genetics revolution, the threat of bioterrorism, or other issues
that will continue to emerge and demand rapid educational intervention.
Thus, this infrastructure is uniquely able to play a pivotal role in
bringing emerging issues in health care to the population at large.''

AGENCY FOR HEALTHCARE RESEARCH AND QUALITY

Recommendation
We recommend appropriations of $390 million for the Agency for
Healthcare, Research and Quality (AHRQ) in fiscal year 2004.--AHRQ
conducts primary care and health services research geared to physician
practices, health plans and policymakers that helps the American
population as a whole.

What Does AHRQ Do?
AHRQ has the following three goals:
--Improve physician practice and Americans' health outcomes;
--Improve the quality of health care (e.g., patient safety);
--Improve the health care system (e.g., increase access and reduce
costs).
In brief, AHRQ ``helps to improve the health and health care of the
American people . . .''----(AHRQ report, March, 2001).

President's Budget Request for Fiscal Year 2004 Cuts AHRQ Funding
The Agency for Healthcare Research and Quality receives only $279
million in the President's proposal; the current funding level is $299
million. Of this figure, $84 million is slated for patient safety
efforts, which includes $50 million for activities related to
information technology investments defined as computerized physician
order entry, computer monitoring for potential adverse drug events and
computerized patient records, among others. In addition, $10 million is
targeted to ``promoting and accelerating the development, adoption and
diffusion of information technology in health care.''

How Does AHRQ Meet Its Goals?
AHRQ translates basic science research findings like those of the
National Institutes of Health into information that doctors can use
every day in their practice. Another key function of the agency is to
support research on the conditions that affect most Americans.

AHRQ Translates Research into Everyday Practice
Congress has provided billions of dollars to the National
Institutes of Health, which has resulted in important insights in
preventing and curing major diseases. AHRQ takes this basic science and
produces information that physicians can use every day in their
practices. AHRQ also distributes this information throughout the health
care system. In short, AHRQ is the link between research and the
patient care that Americans receive.
For example, research shows that beta blockers reduce mortality.
AHRQ supported research to help physicians determine which patients
with heart attacks would benefit from this medication.

AHRQ Supports Research on Conditions Affecting Most Americans
Most typical Americans get their medical care in doctors' offices
and clinics. However, most medical research comes from the study of
extremely ill patients in hospitals. AHRQ studies and supports research
on the types of illness that trouble most people. In brief, AHRQ looks
at the problems that bring people to their doctors--not the problems
that send them to the hospital.
For example, AHRQ supported research that found older, cheaper
antidepressant drugs are as effective as new antidepressant medications
in treating depression, a condition that affects millions of Americans.

Institute of Medicine Recommends $1 Billion for AHRQ
The Institute of Medicine's report, Crossing the Quality Chasm: A
New Health System for the 21st Century (2001) recommended $1 billion
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 a linchpin in retooling the American health care
system.

RURAL HEALTH PROGRAMS

Finally, the Academy supports continued funding for several rural
health programs. In particular, we support the programs of the Federal
Office of Rural Health Policy; Area Health Education Centers, two
programs that are equally important to health care in rural areas and
in our inner cities; the Community and Migrant Health Center Program;
and the National Health Services Corps. 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 dwellers. Continued funding for these rural programs is vital if
we wish to provide adequate health care services to America's rural
citizens.
______

Prepared Statement of the Digestive Disease National Coalition

SUMMARY OF FISCAL YEAR 2004 RECOMMENDATIONS

--Provide increased funding for the National Institutes of Health
(NIH) at 10 percent for fiscal year 2004. Increase funding for
the National Cancer Institute (NCI), the National Institute of
Diabetes and Digestive and Kidney Diseases (NIDDK) and the
National Institute of Allergy and Infectious Diseases by 10
percent for fiscal year 2004.
--Continue focus on digestive disease research and education at NIH,
including the areas of Inflammatory Bowel Disease (IBD),
Hepatitis and other liver diseases, Irritable Bowel Syndrome
(IBS), Colorectal Cancer, Endoscopic Research, Pancreatic
Cancer, Celiac Disease, and Hemochromatosis.
--$25 million for the Centers for Disease Control and Prevention's
(CDC) National Colorectal Cancer Awareness Program.
Chairman Specter, thank you for the opportunity to again submit
testimony to the Subcommittee. Founded in 1978, the Digestive Disease
National Coalition (DDNC) is a voluntary health organization comprised
of 25 professional societies and patient organizations concerned with
the many diseases of the digestive tract. The Coalition has as its goal
a desire to improve the health and the quality of life of the millions
of Americans suffering from both acute and chronic digestive diseases.
The DDNC promotes a strong federal investment in digestive disease
research, patient care, disease prevention, and public awareness. The
DDNC is a broad coalition of groups representing disorders such as
Inflammatory Bowel Disease (IBD), Hepatitis and other liver diseases,
Irritable Bowel Syndrome (IBS), Pancreatic Cancer, Ulcers, Pediatric
and Adult Gastroesophageal Reflux Disease, Colorectal Cancer, Celiac
Disease, and Hemochromatosis.
Mr. Chairman, the social and economic impact of digestive disease
is enormous and difficult to grasp. Digestive disorders afflict
approximately 65 million Americans. This results in 50 million visits
to physicians, over 10 million hospitalizations, collectively 230
million days of restricted activity. The total cost associated with
digestive diseases has been conservatively estimated at $60 billion a
year.
The DDNC would like to thank the subcommittee for its past support
of digestive disease research and prevention programs at the National
Institutes of Health (NIH) and the Centers for Disease Control and
Prevention (CDC). With respect to the coming fiscal year the DDNC is
recommending an increase of 10 percent to $29.8 billion for the
National Institutes of Health (NIH) and all of its Institutes.
Specifically the DDNC recommends that the National Cancer Institute
(NCI), the National Institute of Diabetes and Digestive and Kidney
Disease (NIDDK), and the National Institute of Allergy and Infectious
Diseases (NIAID be given $5.08 billion, $1.79 billion, and $4.1 billion
respectively. We at the DDNC respectfully request that any increase for
NIH does not come at the expense of other Public Health Service
agencies.
With the historic doubling of the budget for NIH completed and the
challenging budgetary constraints the Subcommittee currently operates
under, the DDNC would like to highlight the research being accomplished
by NIDDK which warrants the increase for NIH.

INFLAMMATORY BOWEL DISEASE

In the United States today about 1 million people suffer from
Crohn's disease and ulcerative colitis, collectively known as
Inflammatory Bowel Disease (IBD). These are serious diseases that
affect the gastrointestinal tract causing bleeding, diarrhea, abdominal
pain, and fever. Complications arising from IBD can include anemia,
ulcers of the skin, eye disease, colon cancer, liver disease,
arthritis, and osteoporosis. Crohn's disease and ulcerative colitis are
not usually fatal but can be devastating. The cause of IBD is still
unknown, but research has led to great breakthroughs in therapy.
In recent years researchers have made significant progress in the
fight against IBD. In 1998, the FDA approved the first drug ever
specifically to fight Crohn's disease, a remarkable milestone. The DDNC
encourages the subcommittee to continue its support of IBD research at
NIDDK and NIAID at a level commensurate with the overall increase for
each institute. The DDNC would like to applaud the NIDDK for its strong
commitment to IBD research through the Inflammatory Bowel Disease
Genetics Research Consortium. The DDNC urges the Consortium will
continue its work in IBD research. The DDNC would also commend NIDDK
for organizing and hosting the upcoming meeting entitled ``Research on
Inflammatory Bowel Disease,'' later this month.
Given the recent advancements in treatment for these diseases and
the increased risk that IBD patients have for developing colorectal
cancer, the DDNC strongly believes that generating improved
epidemiological information on the IBD population is essential if we
are to provide patients with the best possible care. Therefore the DDNC
and its member organization the Crohn's and Colitis Foundation of
America encourage the CDC to initiate a nationwide IBD surveillance and
epidemiological program in fiscal year 2004.

HEPATITIS C: A LOOMING THREAT TO HEALTH

It is estimated that there are over 4 million Americans who have
been infected with Hepatitis C of which over 2.7 million remain
chronically infected. About 10,000 die each year and the Centers for
Disease Control and Prevention (CDC) estimates that the death rate will
more than triple by 2010 unless there is additional research,
education, and more effective treatments and public health
interventions. Hepatitis C infection is the largest single cause for
liver transplantation and one of the principal causes of liver cancer
and cirrhosis. There is currently no vaccine for hepatitis C, and
treatment has limited success, making the infection among the most
costly diseases in terms of health care costs, lost wages, and reduced
productivity. Patients who are older at the time of infection, those
who continually ingest alcohol, and those co-infected with HIV
demonstrate accelerated progression to more advanced liver disease.
The DDNC applauds all the work NIH and CDC have accomplished over
the past year in the areas of hepatitis and liver disease. An example
of this commitment has been the convening of the second National
Institutes of Health Management of Hepatitis C Consensus Development
Conference, which occurred in June 2002. The Conference made 17
specific and high priority research recommendations that need to be
pursued to develop better treatments and a cure for hepatitis. The DDNC
urges that these recommendations be funded in fiscal year 2004. The
DDNC also commends NIDDK for the establishment of the Biliary Atresia
Research Consortium and the Adult-to-Adult Living Donor Liver
Transplant Cohort Study. The convening of conferences on Hepatitis C
and Renal Disease and Hepatitis C in Prisons, plus the New Direction
for Therapy of Primary Biliary Cirrhosis are just some more positive
examples of the work NIDDK has undertaken to combat hepatitis and liver
disease. The DDNC urges NIDDK to continue support research in this
area.
The DDNC supports $30 million for the CDC's Hepatitis Prevention
and Control activities. The hepatitis division at CDC supports the
hepatitis C prevention strategy and other cooperative nationwide
activities aimed at prevention and awareness of hepatitis A, B, and C.
The DDNC also urges the CDC's leadership and support for the National
Viral Hepatitis Roundtable to establish a comprehensive approach among
all stakeholders for viral hepatitis prevention, education, strategic
coordination, and advocacy.

COLORECTAL CANCER PREVENTION

Colorectal cancer is the third most commonly diagnosed cancer for
both men and woman in the United States and the second leading cause of
cancer-related deaths. Colorectal cancer affects men and women equally.
Although colorectal cancer is preventable and curable when polyps are
detected early, a General Accounting Office report issued in March 2000
documented that less than 10 percent of Medicare beneficiaries have
been screened for colorectal cancer. This report revealed a tremendous
need to inform the public about the availability of screening and
educate health care providers about colorectal cancer screening
guidelines. In 2003, the New York City Department of Health has
recommended colonoscopy for everyone over age 50 to prevent colorectal
cancer.
The DDNC recommends a funding level of $25 million for the CDC's
Colorectal Cancer Screening and Prevention Program. This important
program supports enhanced colorectal screening and public awareness
activities throughout the United States. The DDNC also supports the
continued development of the CDC-supported National Colorectal Cancer
Roundtable, which provides a forum among organizations concerned with
colorectal cancer to develop and implement consistent prevention,
screening, and awareness strategies.

PANCREATIC CANCER

In 2002, an estimated 28,300 people in the United States were found
to have pancreatic cancer and approximately 28,200 died from the
disease. Pancreatic cancer is the fifth leading cause of cancer death
in men and women. Only 2 out of 10 patients will live 1 year after the
cancer is found and only a very few will survive after 5 years.
Although we do not know exactly what causes pancreatic cancer, several
risk factors linked to the disease have been identified:
(1) Age: Most people are over 60 years old when the cancer is
found;
(2) Sex: Men have pancreatic cancer more often than women;
(3) Race: African Americans are more likely to develop pancreatic
cancer than are white or Asian Americans;
(4) Smoking;
(5) Diet: Increased red meats and fats; and
(6) Diabetes.
The National Cancer Institute (NCI) has established a Pancreatic
Cancer Progress Review Group charged with developing a detailed
research agenda for the disease. The DDNC commends NIDDK for the
establishment in 2002 on an initiative entitled: Liver, Pancreas, and
Gastrointestinal Cell Genome Anatomy Project. The DDNC hopes this new
initiative will call more attention and greater resources to the
diseases of the Pancreas. The DDNC encourages the Subcommittee to
provide an increase for pancreatic cancer research at a level
commensurate with the overall percentage increase for NCI and NIDDK.

IRRITABLE BOWEL SYNDROME (IBS)

IBS is a disorder that affects an estimated 35 million Americans.
The medical community has been slow in recognizing IBS as a legitimate
disease and the burden of illness associated with it. Patients often
see several doctors before they are given an accurate diagnosis. Once a
diagnosis of IBS is made, medical treatment is limited because the
medical community still does not understand the pathophysiology of the
underlying conditions.
Living with IBS is a challenge, patients face a life of learning to
manage a chronic illness that is accompanied by pain and unrelenting
gastrointestinal symptoms. Trying to learn how to manage the symptoms
is not easy. There is a loss of spontaneity when symptoms may intrude
at any time. IBS is an unpredictable and fickle disease. A patient can
wake up in the morning feeling fine and within a short time encounter
abdominal cramping to the point of being doubled over in pain and
unable to function.
The unpredictable bowel symptoms may make it next to impossible to
leave your home. It is difficult to ease the pain than may repeatedly
occur periodically throughout the day. A patient can become reluctant
to eat for fear that just eating a meal will trigger symptoms all over
again. IBS has a broad and significant impact on a person's quality of
life. It strikes individuals from all walks of life and results in a
significant toll of human suffering and disability.
While there is much we don't understand about the causes and
treatment of IBS, we do know that IBS is a chronic complex of systems
affecting as many as one in five adults. In addition;
(1) It is reported more by women than men;
(2) It is the most common gastrointestinal diagnosis among
gastroenterology practices in the United States;
(3) It is a leading cause of worker absenteeism in the United
States; and
(4) It costs the U.S. Health Care System an estimated $8 billion
annually.
Mr. Chairman, much more can still be done to address the needs of
the nearly 35 million Americans suffering from irritable bowel syndrome
and other functional gastrointestinal disorders.

CELIAC DISEASE

Celiac Disease is a life-long condition in which the body develops
an allergy to gluten, a protein found in wheat, barley, and rye, which
can result in damage to the small intestine. Celiac disease affects as
many as two million Americans. Onset of the disease can occur at any
age. The common symptoms of Celiac Disease include fatigue, anemia,
chronic diarrhea or constipation, weight loss, and bone pain. The only
treatment for celiac disease is strict adherence to a gluten-free diet.
Undiagnosed and untreated celiac disease can lead to other disorders
such as osteoporosis, infertility, neurological conditions, and in rare
cases cancer. Persons with Celiac Disease often have other associated
autoimmune disorders as well.
The DDNC along with our Celiac Disease applauds the NIDDK for
organizing and hosting the upcoming meeting entitled ``Consensus
Development Conference on Celiac Disease.'' The DDNC urges the
Subcommittee to recommend more research, medical education, and public
awareness around Celiac Disease.
The DDNC understand the challenging budgetary constraints and times
we live in that is subcommittee is operating under, yet we hope you
will carefully consider the tremendous benefits to be gained by
supporting a strong research and education program at NIH and CDC.
Millions of Americans are pinning their hopes for a better life, or
even life itself, on digestive disease research conducted through the
National Institutes of Health.
Mr. Chairman, on behalf of the millions of digestive disease
sufferers, we appreciate your consideration of the views of the
Digestive Disease National Coalition. We look forward to working with
you and your staff.

DIGESTIVE DISEASE NATIONAL COALITION

The Digestive Disease National Coalition was founded 25 years ago.
Since its inception, the goals of the coalition have remained the same:
to work cooperatively to improve access to and the quality of digestive
disease health care in order to promote the best possible medical
outcome and quality of life for current and future patients with
digestive diseases.
______

Prepared Statement of the Immune Deficiency Foundation

Mr. Chairman, thank you for the opportunity to testify today on
behalf of the Immune Deficiency Foundation (IDF).
IDF is the national non-profit, voluntary health organization
dedicated to improving the treatment of primary immune deficiency
diseases through research and education. Head-quartered in Towson,
Maryland, IDF was founded in 1980 by a group of parents of primary
immune deficient children who wanted to focus attention on the needs of
primary immune deficient patients, physicians, and researchers.
Primary immune deficiency diseases are inherited disorders in which
parts of the body's immune system are missing or do not function
properly. The World Health Organization has identified more than 70
different primary immune deficiency diseases. These disorders affect an
estimated 50,000 Americans, regardless of race, age, or gender.
Fortunately, most primary immune deficient patients are able to
maintain their health through regular infusions of intravenous
immunoglobulin (IGIV). IGIV is a pooled plasma derivative that bolsters
the patient's immune system. IGIV is administered intravenously every
three weeks for the lifetime of the patient. However, if primary immune
deficiency diseases are not properly diagnosed and treated, they can
lead to serious illness and early death.
I am here today to speak as a patient, but I am also a physician.
My case is quite representative of a typical immune deficient patient.
I was diagnosed with Common Variable Immuno-deficiency 10 years ago,
following years of repeated infections, which were unresponsive to
antibiotics, and undiagnosed by numerous physicians who were colleagues
of mine. This led to numerous unsuccessful surgeries resulting in
permanent lung and sinus damage. Prior to my diagnosis, a day was
considered successful if I had enough energy to get out of bed.
Following appropriate diagnosis and treatment with IGIV, I have been
able to return to my medical practice and have a new lease on life.
In my testimony today, I would like to highlight the following
issues of importance to the primary immune deficiency community:
--Primary immune deficiency research at the National Institutes of
Health, including the National Institute of Allergy and
Infectious Diseases' Primary Immunodeficiency Disease Research
Consortium.
--Protection for primary immune deficiency patients as part of the
Centers for Disease Control and Prevention's smallpox
vaccination campaign.

PRIMARY IMMUNE DEFICIENCY RESEARCH AT THE NATIONAL INSTITUTES OF HEALTH

Mr. Chairman, I would like to take this opportunity to thank the
subcommittee for its longstanding support of biomedical research at the
National Institutes of Health. IDF applauds your leadership in
finalizing the five-year effort to double the NIH budget in fiscal year
2003. For fiscal year 2004, we encourage the subcommittee to provide a
10 percent increase to NIH in fiscal year 2004. Moreover, we urge the
subcommittee to continue its support of primary immune deficiency
research at the National Institute of Allergy and Infectious Diseases
(NIAID), the National Institute of Child Health and Human Development
(NICHD), and the National Cancer Institute (NCI).
NIAID Primary Immune Deficiency Disease Research Consortium
Mr. Chairman, NIAID is currently in the process of establishing a
Primary Immune Deficiency Disease Research Consortium. IDF welcomes
this exciting new initiative, which will establish a cooperative group
of investigators to address clinical and pre-clinical research
questions, including the development of new treatments such as gene
therapy. The Consortium will utilize the current registry of primary
immune deficiency patients, which IDF and NIAID currently administer
jointly. These registries provide a comprehensive clinical picture of
each primary immune deficiency disorder, including estimates of disease
prevalence, clinical course, and complications.
Another important element of the Consortium is a repository for
biomedical specimens. IDF encourages the subcommittee to support this
critical research component. The Foundation looks forward to working
closely with NIAID in the development and management of the Consortium.
We believe that IDF is uniquely positioned to serve as NIAID's primary
partner on this important new initiative. We encourage the subcommittee
to support the Primary Immune Deficiency Disease Research Consortium at
a level of $12.8 million in fiscal year 2004.

PROTECTION FOR PRIMARY IMMUNE DEFICIENT PATIENTS AS PART OF CDC'S
SMALLPOX VACCINATION PROGRAM

Mr. Chairman, as you know, our nation has been involved in a
difficult debate over the issue of vaccinating Americans against
smallpox. The Immune Deficiency Foundation supports the
Administration's goal of protecting Americans, specifically our first
responders, from the threat of this terrible disease. However, we
believe it is critical that the federal government take all prudent
steps to protect vulnerable populations from the potential ill effects
of exposure to the smallpox vaccine.
Because of their compromised immune systems, primary immune
deficient patients should not be vaccinated against smallpox.
Unfortunately, the potential exists for primary immune deficiency
patients to contract life-threatening complications from just being
exposed to an individual who has been vaccinated. Consequently, IDF has
been working closely with CDC to ensure that the agency's educational
materials related to the smallpox vaccination campaign include
appropriate references to the unique concerns of the primary immune
deficiency community. We are pleased that CDC has incorporated our
proposed references to primary immune deficiency patients in their
printed materials and on their smallpox prevention website.
Mr. Chairman, thank you for the opportunity to present the views of
the Immune Deficiency Foundation. We look forward to continuing to work
with you on these important issues.

______

Prepared Statement of the National Area Health Education Centers
Organization

SUMMARY OF FISCAL YEAR 2004 RECOMMENDATIONS

1. Increase funding for the health professions and nursing
education programs under Title VII and Title VIII of the Public Health
Service Act to at least $550 million for fiscal year 2004.
2. Increase funding for Area Health Education Centers (AHECs) to
$40 million.
3. Increase funding for Health Education Training Centers (HETCs)
to $10 million.
Mr. Chairman, and members of the subcommittee, I am pleased to
present testimony on behalf of the National AHEC Organization.
I am director of the Ohio Statewide AHEC Program, director of the
Medical College of Ohio AHEC program, and a member of the National AHEC
Organization. NAO is the professional organization representing the
Area Health Education Centers (AHECs) and Health Education Training
Centers (HETCs). Together, we seek to enhance access to quality health
care, particularly primary care and preventative care, by improving the
supply and distribution of health care professionals through community-
academic partnerships

PERSISTENT WORKFORCE SHORTAGES

Mr. Chairman, contrary to what may be commonly understood,
persistent and severe shortages exist in a number of health
professions. Chronic shortages exist for all health professions in many
of our nation's underserved communities, and substantial shortages
exist in all communities for some professions such as nursing,
pharmacy, and certain allied health fields. While the supply of
physicians in the non-primary care specialties may well be adequate,
supply and distribution problems for primary care physicians, nurses,
and many allied health professionals are undermining access and quality
in many of our nation's communities.
Historically, the supply of and demand for health care
professionals has waxed and waned in a manner that produced cycles of
shortage and excess. However, it is reasonable to believe that the
current shortages are of a different and more persistent nature. First,
the breadth and depth of shortages are greater than at any time in the
past. More disciplines are in short supply, more sites of care
(hospitals, nursing homes, home care agencies, and clinics) are
experiencing shortages, and the duration of vacancies is longer.
Second, the demand for health care services is steadily and inexorably
increasing due to the aging population and the advances in medical
technology. Third, the health care provider population is aging itself.
Fourth, the resources with which the health care industry might respond
to shortages are inadequate to the challenges. Due to the squeeze of
managed care, provider institutions are unable to increase salaries,
and due to cuts in government funding, educational institutions are
unable to expand class sizes. Finally, the career opportunities
available to women, who dominate the health care professions, have
expanded greatly.
Health care workforce shortages are occurring in a context of an
increasingly aged population with greater needs for health care
services. In addition, health technology steadily produces advances
that require a higher level of training and sophistication on the part
of health care providers. These trends are occurring at time when the
number and the level of academic preparedness of students entering the
health professions are decreasing.
In addition, minority and disadvantaged populations are egregiously
under represented in the health professions. Given the demographic
trends in the United States, minority populations constitute a major
untapped source of future health care professionals.

WHAT AHECS DO

Mr. Chairman, the AHEC/HETC network is the federal government's
most flexible and efficient mechanism for addressing a wide and
evolving variety of health care issues on a local level. Through AHECs
and HETCs, national initiatives can be targeted to the areas of
greatest need and molded to the particular issues confronting
individual communities. Whether the issue is the nursing shortage,
bioterrorism preparedness, access for the uninsured, or recruiting
under-represented minority students into the health professions, AHECs
and HETCs, where they exist, can assemble the appropriate local
collaboration and apply federal, state, and local resources in a
precise and cost-effective manner.
Since our inception almost thirty years ago, AHECs have partnered
with local, state, and federal initiatives and educational institutions
in providing clinical training opportunities to health professions and
nursing students in rural and underserved communities. We bring the
resources of academic health centers to bear in addressing the health
care needs of these communities. Currently, there are 46 AHEC programs
and 180 centers located in 43 states and the District of Columbia. AHEC
programs are based at schools of medicine, which are the federal AHEC
grant recipients, and are implemented through the regional offices
(centers), each of which serves a defined geographic area.

AHEC programs perform four basic functions:

1. They develop and support the community based training of health
professions students, particularly in underserved rural and urban
areas. Exposing health professions students to underserved communities
increases the likelihood that they will return to these communities to
practice.
Last year (2001-2002 academic year), Ohio's AHECs supported the
clinical education of 578 nursing students and 1353 medical students
and residents at community-based rural and underserved sites. Ohio
AHECs have developed a network of over 800 physicians who volunteer
their time to teach the next generation of health professionals.
Through the AHEC in their region (the Canton Area Regional Health
Education Network), nutrition students from Kent State University-Stark
Campus are placed in senior centers to provide nutritional assessments
of older adults at risk of malnutrition and chronic disease. The
students benefit from clinical experience and the seniors obtain a
valuable but otherwise unavailable service.

2. They provide continuing education and other services that
improve the quality of community-based health care. Improving the
quality of care also enhances the retention of providers in underserved
communities, particularly community health centers.
For example, last year Ohio AHECs provided more than 516 continuing
education programs, which were attended by 10,972 practicing
professionals. These providers did not have to leave their communities
or arrange practice coverage to attend these programs, because the
education programs were brought to them in their local communities. In
this way Ohio AHECs support the viability and, often, the continued,
independent existence of small community hospitals. The Sandusky AHEC
sponsors monthly clinical cancer conferences at nine small hospitals,
which routinely attract the entire medical staff.

3. They recruit under-represented minority students into the health
professions through a wide variety of programs targeted at elementary
through high schools. Minority students are grossly under-represented
in the health professions and are more likely to practice in
underserved communities.
Ohio AHECs provide schoolchildren with classroom education on
health careers, school counselors with updates on the latest
opportunities in the health careers, summer science and medicine
camps', and health career directories for schools.
Additionally, the AHEC in Tuscarawas, Ohio is now training 16
promatoras to become community health workers to improve the health of
Hispanic populations. Currently, health fairs are being planned for
this population with local social service agencies. The promatoras will
staff each agency table to translate and we hope that the agencies will
hire them for future translation assistance. In addition, it is funding
three medical students this summer. Each will spend 8 weeks to develop
health-screening events, develop a Hispanic health risk assessment, and
assist physicians in Hispanic populations to provide medical care and
teach cultural competence.

4. They facilitate and support practitioners, facilities, and
community based organizations in addressing critical local health
issues in a timely and efficient manner.
Ohio has the fourth highest death rate due to diabetes in the
country. Incidence of the disease is much higher among the poor, older
adults, African Americans, and Hispanics. Nearly 50 percent of Ohioans
read at a 5th grade level or lower, greatly reducing the ability for
patients to manage their condition well and to understand the
information presented to them. That is why the Ohio Statewide AHEC
Program developed the ``Best Practices and Real Results Conference:
Diabetes and Literacy.'' This conference will assist health care
professionals to understand the growing burden of diabetes, and the
impact of low literacy.

THE ROLE OF HETCS

The HETC programs were created to address the public health needs
of severely underserved populations in border and non-border areas.
Currently, HETC programs exist in 12 states and are supported by a
combination of federal, state, and local funding, the majority of which
comes from non-federal sources.
Because the majority of preventable health problems are due to
health behaviors and the environment, HETCs focus on community health
education and health provider training programs in areas with severely
underserved populations. HETCs target minority groups, disadvantaged
communities, and communities with diverse culture and languages.

COLLABORATIVE EFFORTS

Virtually all AHEC and HETC programs are collaborative in nature.
They routinely partner with a wide variety of federal, state, and
locally funded programs. Examples of these collaborations include
health professions schools, primary care residency programs, community
health centers, primary care associations, geriatric education centers,
the National Health Service Corps, public health departments, health
career opportunity programs, school districts, and foundations.
Additionally, AHECs and HETCs often go beyond their core functions
to undertake a wide variety of innovative programs that are tailored to
specific health issues affecting the communities they serve. Because
health issues vary from community to community, the programs of each
AHEC and HETC also vary considerably. AHECs and HETCs respond to
changing health and health workforce needs in a flexible and timely
manner. Examples of current issues for which we are directing our
resources are:

1. The nursing shortage.--Currently, AHECs and HETCs are working
with schools of nursing, state nursing associations, and others to
increase the number of qualified applicants to nursing schools,
increase minority enrollment in nursing schools, expand the number of
community-based nursing training sites, and retrain nurses who wish to
re-enter the profession.
Ohio's AHECs are attacking the nursing shortage at multiple levels;
from leadership at both local and state level policy and education
planning forums to directly providing health career education programs
to high school students. The AHEC in Allen County began a RN-to-BSN
program several years ago. By providing pre-admission counseling,
arranging local and on-line coursework and instructors, and placing in
local hospitals computer workstations linked to the Medical College of
Ohio library, RNs can remain on the job in the community while
obtaining a BSN degree. In the past eight years over 400 nurses have
completed the program.

2. Bioterrorism education.--Currently, AHECs and HETCs are working
with public health departments to educate health and public health
professionals on surveillance, reporting, risk communication,
treatment, and other responses to the threat of bioterrorism.
Ohio's AHECs have stepped in to provide health professionals with
the latest updates on bioterrorism. In rural areas of the state, which
often do not have satellite capabilities, AHECs bring in downlinks and
sponsor bioterrorism preparedness programs. In 2002 Statewide Ohio AHEC
Program received one of 6 federal bioterrorism grants to fund a two
component approach to bioterrorism training and education for health
professionals in Ohio. The focus of the training us on skills necessary
for a wide range of health professionals to be prepared to offer
medical assistance in the first moments through 12 to 24 hours after an
act of terrorism. This year, the Statewide Ohio AHEC Program began its
Basic Anti-Terrorism Emergency Life-Saving Skills (BATELS) program to
prepare health care professionals with a basic fund of knowledge
concerning intentional incidents within the context of an all hazards
disaster management approach. After one session, the Statewide Ohio
AHEC has trained 70 health care professionals, most of whom work in
community health centers. At the Medical College of Ohio, BATELS is a
required course for medical students, and is provided by the school's
AHEC program.

3. The National Health Service Corps (NHSC).--AHECs and HETCs
undertake a variety of programs related to the placement and support of
NHSC scholars and loan repayment recipients.
The Ohio University AHEC has actively supported the NHSC ``SEARCH''
program by interviewing prospective students, recommending community
preceptors, and monitoring placements of 15 students each summer in
rural and Appalachian sites.

4. Expansion of community health centers.--AHECs and HETCs are
collaborating with health professions schools, primary care
associations, and community health centers to increase the supply of
providers willing and able to work in community health centers. In
addition, AHECs/HETCs are working directly with CHC providers to
improve the quality of care
The Ohio AHEC program and the Ohio Primary Care Association have
worked together to promote and support their complementary missions
through co-sponsorship of educational programs and development of
clinical sites such as, ``Diabetes and Literacy'' and ``BATELS'' for
community health centers.

JUSTIFICATION FOR FUNDING RECOMMENDATIONS

Mr. Chairman, I respectfully ask the Subcommittee to support our
recommendations to increase funding for the health professions and
nursing education programs under Title VII and Title VIII of the Public
Health Service Act to at least $550 million. Our recommendations are
consistent with those of the Health Professions and Nursing Education
Coalition (HPNEC).
The AHEC and HETC programs improve access to primary and
preventative care through community partnerships, linking the resources
of academic health centers with local communities. AHECs and HETCs have
proven to be responsive and efficient models for addressing an ever-
changing variety of community health issues.
However, AHECs and HETCs have not yet fully realized their
potential to be a nationwide infrastructure for local training and
information dissemination. In order to realize that potential
additional federal investment is required. That is why we are
requesting an increase in funding to $40 million in fiscal year 2004
from $33.4 million in fiscal year 2003 for AHECs and $10 million in
fiscal year 2004 from $4.4 million in fiscal year 2003 for HETCs.

______

Prepared Statement of the Association for Professionals in Infection
Control and Epidemiology

Infection control professionals nationwide wish to thank Congress
for its long-standing support of the Centers for Disease Control and
Prevention (CDC), particularly with regard to strengthening the overall
public health infrastructure in recent years. Although enhancements to
our system have only just begun, these widespread efforts have already
had a monumental impact on safeguarding the health of our nation.
Indeed, if stronger infrastructure were not currently in place, we
would find ourselves unable to adequately address the significant
threat posed by Sudden Acute Respiratory Syndrome (SARS).
Emerging pathogens will continue to confound and challenge even the
strongest of public health systems. Changes in human behavior,
alterations to the environment, widespread antibiotic usage, and
dramatic increases in international commerce and travel are factors
contributing to the proliferation of drug resistance and resurgent and
emerging microorganisms. It is imperative that we continue to enhance
surveillance sites, strengthen epidemiological and laboratory response
capabilities and support efforts to address emerging infectious disease
on a global level.
Since the CDC is the primary entity responsible for safeguarding
the public health, it is imperative that it be granted adequate
resources to perform this monumental task. APIC recommends a fiscal
year 2004 funding level of $7.9 billion and we hope that Members of
Congress will take this into consideration during the appropriations
process.
These enhancements will also help our nation to mobilize in the
event of a bioterrorist act. However, the public health aspect is only
part of the equation. We can no longer ignore the critical role of
health care providers and health care facilities in our nation's
response efforts. Hospitals and other care providers simply do not have
the resources necessary to treat and contain medical cases that may
occur as a result of a bioterrorist event or a new emerging pathogen.
Additional resources are needed to fund supplies, special isolation
rooms, specialists in infection control and disease prevention as well
as educational programs to train all health care providers.
Facilities will succeed in this effort only through proper
enhancements to their current systems and with adequate personnel and
resources. Without this support, they cannot possibly take on these
crucial public health-related activities on top of their current
responsibilities. If the Health Resources and Services Administration
(HRSA) is to be charged with distributing such funds, we would
respectfully request that a much more realistic amount be allocated for
this purpose.
We are seeking Congressional support in ensuring that federal
funding reaches the level of the individual health care facilities as
soon as possible. The health and safety of our citizens depend upon it.

FUNDING REQUEST

APIC is recommending the following funding levels for enhancing
hospital infrastructure and bioterrorism preparedness.
--$3 billion for the Centers for Disease Control and Prevention (CDC)
to continue building adequate public health infrastructure for
responding to bioterrorism. This would increase the CDC
Bioterrorism budget by $748 million over fiscal year 2002 and
represents an increase of $1.4 billion over the President's
fiscal year 2003 budget request.
--$620 million for the Health Resources and Services Administration
(HRSA) to support the continued enhancement of bioterrorism
readiness infrastructure at hospitals and other health care
facilities. This would increase the HRSA Hospital Preparedness
and Infrastructure Program by $485 million over fiscal year
2002, and is $102 million above the President's fiscal year
2003 budget proposal.

WHAT IS NEEDED?

Enhanced Infection Surveillance and Reporting.--for syndromes and
diseases potentially associated with bioterrorism. Extensive
surveillance is needed in emergency departments, admissions, and other
affiliated sites, not just the primary care facility, reported in real-
time, and then tabulated/communicated back to appropriate recipients of
data. This would include ambulatory care sites and ancillary sites.
Surveillance tools need to be developed that facilitate rapid analysis
and communication of suspected bioterrorism. These tools are best
utilized when they are consistent in nature, user friendly, and
wireless compatible.
Timely, Effective Communication with the Public Health Community.--
The current infrastructure is insufficient; we need to develop and
ensure rapid communication and electronic real-time reporting
capabilities among the Federal, State, and Local levels. This includes
the quick fine-tuning and deployment of NEDS or comparable systems.
Current computer and communication systems are not technologically
advanced to support the potential influx of data and provide feedback
instantaneously. This also includes the necessary mobile devices to
support collection of information and transmission to a centralized
location/database. Communication needs to include smallpox vaccination
data of health care providers and related smallpox Rapid Response Team
members, available electronically throughout all jurisdictions.
Adequate Laboratory Services.--To ensure the availability of rapid,
effective laboratory methodologies. In response to cost containment
pressures, many facilities have chosen to outsource certain testing.
This has a direct impact on the timeliness of results--a crucial factor
in addressing a bioterrorist event. Furthermore, managed care
constraints have forced practitioners to limit the ordering of tests
required to document infectious agents which may impede our ability to
detect a problem if there is one. The designated lab facilities that
have requested status for testing need support to train personnel and
or employ experienced personnel for handling and testing of specimens.
Adequate Airborne Infection Isolation Rooms (AIIRs) in All
Facilities.--To ensure that facilities can isolate patients in
environmentally appropriate conditions and still provide essential
health care services. Development of such architectural plans should be
done via appropriate multidisciplinary teams using the American
Institute of Architects' 2001 ``Guide for Design and Construction of
Hospitals and Health Care Facilities.'' There is a great deal of
disparity among facilities in regard to airborne isolation capability.
Older facilities are often ill-equipped to triage, evaluate and admit
patients--and may have very rudimentary, if any, airborne isolation
rooms. Many facilities also have discrepancies in what type of patient
even needs isolation and when to take them out, so they may report
adequate or inadequate rooms based on their current interpretation of
symptoms and/or syndromes. It is critical that every hospital has the
capability to safely care for patients with potentially communicable
conditions.
Education--To train clinicians on the signs, symptoms, and
appropriate control measures for infectious agents likely to be used by
terrorists. Education is paramount in training the personnel
responsible for caring for patients to ensure the optimal safety of
both patient and health care provider.
Adequate Health Care Personnel/Resources.--To ensure optimal
patient care. We are currently in the midst of a major nursing shortage
and there is a critical need to address this issue, as it will have
drastic implications. We also need adequate and trained hospital
epidemiologists and infection control professionals to implement and
sustain the recommendations of the CDC and professional organizations
at the grassroots level. These professionals are the community link to
the public health system and are a vital partner in controlling and
preventing the spread of contagion.
Strong Occupational Health and Safety Programs.--To ensure the
safety and health of this critical workforce. Vaccination programs and
other occupational health programs need to address liability, furlough
and workers' compensation issues for health care facilities.
We also need to ensure continued funding and support of patient
care activities that enhance patient safety and health care worker
safety. Implementation of recommendations to isolate and contain new
pathogens like SARS and other agents stress the budget of hospitals and
ambulatory care centers due to the increased utilization and costs for
personal protective equipment and supply management.
The Association for Professionals in Infection Control and
Epidemiology (APIC) is a nonprofit professional organization comprised
of some 12,000 members, most of whom work in health care facilities
preventing and controlling infections. In the event of a bioterrorist
attack, these health care professionals will be helping to lead the
response for their facilities--caring for victims as well as
controlling the spread of infection to others.
For more information, please contact Jennifer Thomas-Barrows,
Director of Public Policy at 860-675-6869 [email protected] or Dale
Dirks, Health & Medicine Counsel of Washington, 202-544-7499
[email protected]
association for professionals in infection control and epidemiology
APIC is a multi-disciplinary, voluntary, international
organization, which promotes wellness and prevents illness and
infection world-wide by advancing health care epidemiology through
education, collaboration, research, practice, and credentialing.

______

Prepared Statement of the Pulmonary Hypertension Association

SUMMARY OF FISCAL YEAR 2004 RECOMMENDATIONS

--$1 million within the Centers for Disease Control and Prevention
(CDC) for a pulmonary hypertension awareness and education
program.
--A 10 percent increase for the National Heart, Lung and Blood
Institute (NHLBI).
--$30 million for the Health Resources and Services Administration's
(HRSA) ``Gift of Life Donation Initiative.''
Mr. Chairman, thank you for the opportunity to submit written
testimony regarding fiscal year 2004 appropriations for the Centers for
Disease Control and Prevention (CDC), National Institutes of Health
(NIH), and Health Resources and Services Administration (HRSA).
PH is a rare disorder involving both the heart and the lungs. The
walls of the blood vessels that supply the lungs thicken and often
constrict, making them unable to carry normal amounts of blood. The
heart works harder to compensate and eventually can't keep up. Life is
threatened. Currently, there is no cure. Symptoms of pulmonary
hypertension include shortness of breath with minimal exertion,
fatigue, chest pain, dizzy spells and fainting.
When PH occurs in the absence of a known cause, it is referred to
as primary pulmonary hypertension (PPH). This term should not be
construed to mean that because it has a single name it is a single
disease. There are likely many unknown causes of PPH.
Secondary pulmonary hypertension (SPH) means the cause of the
disease is known. Common causes of SPH are the breathing disorders
emphysema and bronchitis. Other less frequent causes are scleroderma,
CREST syndrome and systemic lupus. In addition, the use of diet drugs
can lead to the disease.
While new treatments are available, unfortunately, PH is frequently
misdiagnosed and often progresses to late stages by the time it is
detected. Although PH is chronic and incurable with a poor survival
rate, the new treatments becoming available are providing a
significantly improved quality of life for patients. Recent data
indicates that the length of survival is continuing to improve, with
some patients able to manage the disorder for 20 years or longer.
Eleven years ago, when three patients who were searching to end
their own isolation founded this organization, there were less than 200
diagnosed cases of this disease. It was virtually unknown among the
general population and not well known in the medical community. They
soon realized that this was not enough and as membership began to
grow--driven by a newsletter written by patients and distributed by
doctors--and as a community began to form, an 800 number support line
was launched, support groups were established, a Scientific Advisory
Board (SAB) was formed, a Patient's Guide to Pulmonary Hypertension was
written, and a web site was launched.
Today, PHA includes:
--Over 4,500 patients, family members, and medical professionals.
--An international network of over 100 support groups.
--An active and growing patient telephone helpline.
--A new and fast-growing research fund. (A cooperative agreement has
been signed with the National Heart, Lung, and Blood Institute
to jointly create and fund five, five-year, mentored clinical
research grants and PHA has awarded seven Young Researcher
Grants.)
--A host of numerous electronic and print publications, including the
first medical journal devoted to pulmonary hypertension--
published quarterly and distributed to all cardiologists,
pulmonologists and rheumatologists in the United States.

CENTERS FOR DISEASE CONTROL AND PREVENTION

PHA applauds the subcommittee for its leadership in encouraging CDC
to initiate a professional and public PH awareness campaign. Currently,
we are working with officials at the CDC to establish this important
program that will better inform health care professionals and the
general public about PH, its symptoms, and treatment options.
PHA knows that Americans are dying because of a lack of awareness
of both pulmonary hypertension and recent advances in research and
treatments. Most particularly, this is true among underserved
populations. These are the least likely and the least able to see the
three and four doctors it often takes to get a correct diagnosis. We
believe that activities proposed below need to include special focus on
reaching underserved populations and their medical services.
The following is a description of the specific initiatives we hope
to launch in collaboration with CDC.

(1) Increasing awareness and understanding of PH among primary care
physicians is critically important, because these practitioners are
usually the first point of contact for PH patients. If the primary care
doctor misses the symptoms, then the chance for early diagnosis depends
upon the intuition and persistence of the patient. They have a chance,
if they aggressively pursue diagnosis by trained and aware specialists.
If they are not aggressive, or if they are in a health plan that
requires their general practitioner to prescribe the referral, they are
more likely to go undiagnosed until it is too late to control their
illness. To increases awareness we propose to launch the following:
--Written and video diagnostic tools for placement on the Internet.
--Working with state health departments and clinic administrators to
develop information for mailing to primary care physicians,
medical schools and medical centers in the United States
drawing their attention to the new web resources.
--A simplified and visually attractive print version of the proper
diagnostic procedures, which will be targeted to primary care
physicians, public health clinics, medical schools, and medical
centers in the United States.
--Advertising in publications general practitioners and public health
professionals are likely to read. The emphasis will be the
importance of early diagnosis and the ease of accessing
diagnostic tools via the Internet.
--Improvements to an already produced CD-ROM that explains pulmonary
hypertension from a variety of perspectives. We would like to
make these available to the medical community and patients
through our web site on an as requested basis and at
conferences and through targeted mailings.

(2) Due to the advancements in treatment for PH, it is important
that we also focus on educating cardiologists and pulmonologists. Our
strategies for reaching cardiovascular specialists include:
--Expansion of the first Pulmonary Hypertension Journal focused on
educating a cardiologists and pulmonologists on issues related
to the diagnosis and treatment of the illness.
--Placement of additional detailed information on the illness on the
web. The PH Journal and other publications will promote this
availability.
--Expansion of the medical section of PHA's international conference
on pulmonary hypertension (the largest PH conference in the
world).
--Expansion of PHA's Pulmonary Hypertension Resource Network. This
program is focused on increasing awareness and knowledge of PH
among nurses, respiratory therapists, technicians and
pharmacists through peer education.

(3) Finally, PHA is committed to increasing PH awareness among the
general public through the development of the following initiatives:
--A series of 10, 15, and 30 second public service announcements on
PH. These PSAs will be in both audio and video form.
--A PH media relations manual.
--An organ donation and transplant listing Awareness Campaign
(unfortunately, many PH patients die before finding a suitable
organ donor).
--Expansion of awareness and information activities on PHA's web
site.
We look forward to working with the CDC to implement these and
other initiatives aimed at increasing awareness of PH in the United
States and throughout the world. For fiscal year 2004, we encourage the
subcommittee to continue to support the mission of the CDC with an
overall appropriation of $7.9 billion. Moreover, we urge you to provide
$1 million within CDC's Cardiovascular Disease program for a PH
awareness campaign.

NATIONAL HEART, LUNG AND BLOOD INSTITUTE

Mr. Chairman, PHA commends the leadership of the National Heart,
Lung and Blood Institute (NHLBI) for its support of PH research. Two
years ago, two separate groups of scientists funded by NHLBI
simultaneously identified a genetic mutation associated with primary
pulmonary hypertension.
The two groups independently reported that defects in the BMPR2
gene, which regulates growth and development of the lung, are
associated with PPH. The defects in the gene lead to the abnormal
proliferation of cells in the lung characteristic on PPH.
Although both studies suggest that only one gene is involved in
PPH, neither group identified the defects in BMPR2 as the sole cause of
PPH. In addition, since many people without a known family history of
PPH get the disease, both groups suggested that other factors may
interfere with control of the tissue growth. Now that we have
pinpointed a gene, we can focus on learning how it works. Hopefully,
that information will enable researchers to devise better treatments
and perhaps eventually a preventive therapy or cure.
We were pleased and excited that NHLBI recently convened a meeting
of leading PH researchers to chart the future of PH research. We
appreciate the agency's commitment to advancing research to better
understand and ultimately cure this disease.
Mr. Chairman, PHA would like to thank you and the subcommittee for
your leadership in support of funding for the National Institutes of
Health. Moreover, we would like to thank the subcommittee for the
inclusion of committee recommendations on PH research at NHLBI in the
fiscal year 2003 Senate L-HHS report. For fiscal year 2004, PHA joins
with the Ad Hoc Group for Medical Research Funding in supporting a 10
percent increase for NHLBI.

GIFT OF LIFE DONATION INITIATIVE AT HRSA

Mr. Chairman, PHA commends the leadership of Secretary Thompson on
the success of his ``Gift of Life Donation Initiative.'' Currently,
there are three drugs that PH patients can be prescribed to help
improve the quality of life with PH. Eventually, many patients must
move toward lung or heart and lung transplantation. PH is a difficult
to diagnose illness and while patients often list soon after diagnosis,
for many PH patients it is too late. This why PHA is developing the
Bonnie's Gift Project.
Bonnie's Gift was started in memory of Bonnie Dukart, one of PHA's
most active and respected leaders. Bonnie was a PH patient herself. She
battled with PH for almost 20 years until her death in 2001 following a
double lung transplant. Prior to her death, Bonnie expressed an
interest in the development of a program within PHA related to
transplant information and awareness. PHA will use Bonnie's Gift as a
way to disseminate information about PH, the importance of early
listing, the importance of organ donation to our community and organ
donation cards.
Consequently, PHA applauds the administration for its ``Gift of
Life Donation Initiative,'' which is designed to increase organ
donation rates throughout the country. We look forward to working with
the ``Gift of Life Donation Initiative'' to increase awareness of the
importance of organ donation among the PH community, the medical
community and the public. Mr. Chairman, PHA supports $30 million in
fiscal year 2004 for HRSA's ``Gift of Life Donation Initiative.''

CONCLUSION

Mr. Chairman, once again thank you for the opportunity to present
the views of the Pulmonary Hypertension Association. We look forward to
continuing to work with you and the subcommittee to improve the lives
of pulmonary hypertension patients. If you have any questions or would
like additional information, please do not hesitate to contact me or
the PHA National Office in Silver Spring, Maryland (301) 565-3004 x101.

______

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

Mr. Chairman, on behalf of the Society of Teachers of Family
Medicine, the Associations of Departments of Family Medicine, the
Association of Family Practice Residency Directors, and the North
American Primary Care Research Group, we of would like to thank you for
the opportunity to provide this statement for the record on behalf of
funding for family medicine training, and the Agency for Health Care
Research and Quality (AHRQ).

HEALTH PROFESSIONS: THE PRIMARY CARE MEDICINE AND DENTISTRY CLUSTER

Mr. Chairman, the Organizations of Academic Family Medicine would
like to thank you for this committee's commitment to these programs. We
appreciate the funding included in the fiscal year 2003 appropriations
funding bill, especially in light of fiscal constraints. Family
medicine training programs are funded under Section 747, the Primary
Care Medicine and Dentistry cluster, of Title VII of the Public Health
Service Act. We ask that you continue your support for family medicine
training, and bring the appropriations level for section 747, the
Primary Care Medicine and Dentistry Cluster, up to $169 million for
fiscal year 2004, of which $96 million is needed for family medicine.
This statement is designed to show the committee how its investment is
paying off. This statement will discuss the success of these programs
and include recommendations about what still needs to be done. As you
look at all the opportunities you have to fund domestic health programs
you need to be able to make judgments about the value and utility of
these programs. We have been asked in various venues to show proof that
these funds actually do what they are designed to do. We must show that
this money makes a difference. In this statement we intend to do just
that. In addition, we believe Congress also needs to understand the
unmet needs that exist in our nation--needs Health Professions programs
can successfully help address.

President's Budget Request for Fiscal Year 2004 Once Again Zeros Out
Primary Care Funding
The President's budget zeroes out funding for the Primary Care
Medicine and Dentistry cluster. In addition, the proposal includes only
$109 million for all of the Health Professions programs (Title VII and
VIII), a sharp cut of almost 75 percent from the fiscal year 2003 level
of $423.8 million. The budget also claims these programs are
ineffective, although we believe the analysis used by OMB to determine
this is extremely flawed. While OMB has criticized the entire group of
21 health professions programs taken together as lacking clear purpose,
the goals of those specific programs under Section 747 are very clear.
According to several studies (see below), Title VII dollars in general,
and family medicine funding in specific have proven effective in
addressing several major health professions problems.

Family Medicine Training Programs Are A Success
First, let's take a look at health professions training--
specifically family medicine training. These programs are producing the
outcomes that Congress has requested. In a current study (Family
Medicine, June 2002), the Robert Graham Center For Policy Studies In
Family Practice and Primary Care has shown that federal funding through
Title VII of family medicine departments, predoctoral programs, and
faculty development has made a difference. The study shows that:
--All three types of grants made a difference in producing more
family physicians, and more primary care doctors
--Predoctoral and department development grants made a difference in
producing more primary care doctors serving in rural areas, and
more primary care doctors serving in primary care he alth
professional shortage areas.
--Sustained funding during the years of medical school training had
more positive impact than intermittent funding.
We must conclude from this data that this funding means that
thousands of physicians are making different career choices, choices
that positively affect millions of patients in underserved areas and in
primary care. Moreover, if this money were to ``go away'' fewer
students would be making these career choices.

Other Indicators Of Success
The federal government's independent General Accounting Office
(GAO) has also shown that this money works. The GAO, in two reports in
1994, addressed the question of how do we know Title VII money is well
spent? A July 1994 report, states that ``the programs were important
for funding innovative projects and providing `seed money' for starting
new programs. For example, Title VII was considered important in the
creation and maintenance [emphasis added] of family medicine
departments and divisions in medical schools.'' In another report, the
GAO states in October 1994 that ``students who attended schools with
family practice departments were 57 percent more likely to pursue
primary care.'' In addition, the report goes on to say that ``students
attending medical schools with more highly funded family practice
departments were 18 percent more likely to pursue primary care and
students attending schools requiring a third-year family practice
clerkship were [also] 18 percent more likely to pursue primary care.''
The money spent on Section 747 of Title VII is directly targeted in
these areas.

Loss of Funding for Family Medicine Training Would Cause Tremendous
Impact on Service to the Underserved
Data show that if production of family physicians was to fall, the
impact on the nation's underserved would be great. The fewer the number
of family physicians produced, the greater the number of new health
professional shortage areas, or HPSAs. This holds true even in
comparison with the combined loss of internists, pediatricians and
obstetrician/gynecologists. The United States relies on family
physicians unlike any other specialty. Without family physicians an
additional 1332 of the United States' 3082 urban and rural counties
would qualify for designation as primary care HPSAs. This contrasts
with an additional 176 counties that would meet the criteria if all
internists, pediatricians, and ob/gyns in aggregate were withdrawn. The
bottom line is that without family physicians 1332 counties would
qualify for primary care HPSA designation vs. 176 counties if other
primary care specialists were withdrawn.

What Is The Unmet Need? Why Must We Continue To Fund And Grow These
Programs?
According to a study by Politzer, et al (The Journal of Rural
Health, Winter, 1999) Title VII funding is key to ending HPSAs. This
funding has led to the time needed for HPSA elimination to decrease to
15 years. Doubling the funding for these programs would decrease the
time for HPSA elimination to as little as 6 years. According to the
study, without this funding, not only would HPSAs not be eliminated,
but the number of shortage areas would continue to grow. Moreover,
success has been attained by an allocation of funds more favorable to
family medicine than the other two primary care specialties. Title VII
funding has indeed accomplished many of the objectives for which it was
designed:
--Funding of in novative projects
--Providing ``seed money'' for the start-up of new projects
--The creation and maintenance of departments of family medicine in
the nation's medical schools
--The development of 3rd year clerkships in family medicine
--The increase in students selecting primary care residencies from
those schools with funded family medicine departments and 3rd
year clerkships
--The increased rate of graduates from Title VII funded projects
entering practice in medically underserved areas (MUAs), with a
resultant reduction in the time required for Health Professions
Shortage Area (HPSA) elimination

Section 747 Advisory Committee Recommends Higher Funding
In 1998, Congress established an Advisory Committee to review and
make recommendations on Section 747. The Advisory Committee on Training
in Primary Care Medicine and Dentistry (ACTPCMD) recently released its
recommendations to Congress and the Secretary of the Department of
Health and Human Services. The first of six recommendations urges
greatly expanding federal support for Section 747 to $198 million. The
Committee notes the growing need for primary care providers, as well as
the success of Title VII funded programs. The training enterprise that
does not value primary care either financially or otherwise is a key
part of the problem. Title VII funds that support the infrastructure
and stability of family medicine departments in medical schools have to
be sustained in order to keep producing the current levels of primary
care physicians and, more specifically, those who will practice in
rural and other underserved areas. Clearly, the programs of Title VII
are on the right track toward meeting the health care challenges of the
21st century. So, while we believe that current funding must be
maintained, more needs to be done.

Proposed Performance Measures Need to be Redefined
The current proposed performance measures are neither measurable
nor appropriate. Consequently, assessments of effectiveness of the
programs based on these measures are highly flawed. For example, the
target set for the proportion of underrepresented minorities (URMs) and
disadvantaged students in health professions funded programs is set at
40 percent for 2004, even though only 12.5 percent of current medical
school graduates are URMs, and data on disadvantaged backgrounds is not
routinely, or accurately collected. The concept of disadvantaged
background varies based on income related to family size, or is based
on a vague--non-quantifiable--notion of persons growing up in
environments that don't prepare them to enter health professions
schools. In 2000 approximately 12.5 percent of the medical degrees
awarded in the United States went to underrepresented minorities. For
all of health professions minority representation has risen from 8.3
percent in 1985 to 11.7 percent in 2000. Given this data, it's simply
unrealistic to expect any program to increase its minority
representation in one year from 12.5 percent to 25 or 40 percent.

Mr. Chairman, we know that this committee has to weigh the value of
funding various programs against each other. We hope that the evidence
we have presented here will bring the committee to the conclusion that
funding spent on these programs would bring value for the money and
would be money exceptionally well spent.

FUNDING FOR THE AGENCY FOR HEALTH CARE RESEARCH AND QUALITY (AHRQ)

Mr. Chairman, once again, we thank you and this committee for
increasing funding for this important agency. It is apparent that the
key federal agency available to fund primary care research is the
Agency for Healthcare Research and Quality (AHRQ). In it's recent rea
uthorization, Congress established within the Agency a Center for
Primary Care Research to ``serve as the principal source of funding for
primary care practice research in the Department of Health and Human
Services.'' The statute defined primary care research as research that
``focuses on the first contact when illness or health concerns arise,
the diagnosis, treatment or referral to specialty care, preventive
care, and the relationship between the clinician and the patient in the
context of the family and community.

Funding Request For AHRQ
We recommend appropriations of $390 million for the Agency for
Healthcare Research and Quality (AHRQ) in fiscal year 2004. AHRQ
conducts primary care and health services research geared to physician
practices, health plans and policymakers that helps the American
population as a whole.

President's Budget Request for Fiscal Year 2004 Cuts AHRQ Funding
The President's budget includes $279 million for AHRQ, a cut of
about $24 million, from the current funding level of $303.7 million. If
this budget request of $279 million were enacted, a reduction of
funding of over 8 percent would result. Under this scenario, AHRQ would
be unable to award any new non-patient safety grants in fiscal year
2004 and existing non-patient safety grants would have to be cut by 15
percent. We are particularly grateful for this committee's efforts last
year when the President's proposed budget would have reduced AHRQ by
$48 million. Your restoration of AHRQ's funding in the final funding
bill was critical in continuing research needed to improve health care
quality, access, and financing in the United States. Now as you develop
your fiscal year 2004 budget, we ask that you not only maintain, but
enhance funding for this critical agency.

What Does AHRQ Do?
AHRQ's three goals are to (1) improve physician practice and
Americans' health outcomes, (2) improve the quality of health care
(e.g., patient safety), and (3) improve the health care system (e.g.,
increase access and reduce costs). In brief, AHRQ ``helps to improve
the health and health care of the American people.'' (AHRQ report,
March, 2001).

How Does AHRQ Meet Its Goals?
AHRQ translates research findings from basic science entities like
the National Institutes of Health into information that doctors can use
every day in their practice with their patients. Another key function
of the agency is to support research on the conditions that affect most
Americans.

AHRQ Translates Research into Everyday Practice
Congress has provided billions of dollars to the National
Institutes of Health, which has resulted in important insights in
preventing and curing major diseases. AHRQ takes this basic science and
produces information that physicians can use every day in their
practices. AHRQ also distributes this information throughout the health
care system. In short, AHRQ is the link between research and the
patient care that Americans receive. An example of this link is basic
science research showing that beta blockers reduce mortality. AHRQ
supported research to help physicians determine which patients with
heart attacks would benefit from this medication.

AHRQ Supports Research on Conditions Affecting Most Americans
Most Americans get their medical care in doctors' offices and
clinics. However, most medical research comes from the study of
extremely ill patients in hospitals. AHRQ studies and supports research
on the types of illness that trouble most people. AHRQ looks at the
problems hat bring people to their doctors every day--not the problems
that send them to the hospital. For example, AHRQ supported research
that found older antidepressant drugs are as effective as new
antidepressant medications in treating depression, a condition that
affects millions of Americans.

Institute of Medicine Recommends $1 Billion for AHRQ
The Institute of Medicine's report, Crossing the Quality Chasm: A
New Health System for the 21st Century (2001), recommended $1 billion a
year for AHRQ to ``develop strategies, goals, and actions plans for
achieving substantial improvements in quality in the next 5years . .
.'' The report looked at redesigning health care delivery in the United
States. AHRQ is a linchpin in retooling the American health care
system.

RECOMMENDATIONS FOR FAMILY MEDICINE TRAINING AND RESEARCH

The Organizations of Academic Family Medicine have two main
recommendations for the fiscal year 2004 Labor/HHS Appropriations bill.
They are as follows:
--We ask that you continue your support for family medicine training,
and bring the appropriations level for section 747, the Primary
Care Medicine and Dentistry Cluster, up to $169 million for
fiscal year 2004, of which $96 million is needed for family
medicine.
--In order to support critical practice-oriented primary care
research, and to ensure that existing grants and contracts will
not be cut, we are asking that the Agency for Healthcare
Research and Quality be funded at $390 million.

______

Prepared Statement of the March of Dimes Birth Defects Foundation

The March of Dimes is pleased to have the opportunity to submit
testimony on behalf of its 1500 staff and over 3 million volunteers,
and share with you some of the Foundation's federal funding priorities
for fiscal year 2004. As you may know, the March of Dimes is a national
voluntary health agency founded in 1938 by President Franklin D.
Roosevelt to prevent polio. Today, the Foundation works to improve the
health of mothers, infants and children by preventing birth defects and
infant mortality through research, community services, education, and
advocacy. The March of Dimes is a unique partnership of scientists,
clinicians, parents, members of the business community, and other
volunteers affiliated with 54 chapters in every state, the District of
Columbia and Puerto Rico.

CENTERS FOR DISEASE CONTROL AND PREVENTION (CDC)

National Center on Birth Defects and Developmental Disabilities
Of the four million babies born each year in the United States,
approximately 150,000 are born with one or more serious birth defects.
Birth defects are the leading cause of infant mortality accounting for
more than 20 percent of all infant deaths and are responsible for about
30 percent of all pediatric hospital admissions. In addition, birth
defects are the fifth-leading cause of years of potential life lost and
contribute substantially to childhood morbidity and long-term
disability. Because the causes of about 70 percent of all birth defects
are unknown, the public continues to be anxious about whether
environmental pollutants cause birth defects, developmental
disabilities, or other adverse reproductive outcomes. The public also
has many questions about whether various occupational hazards, dietary
factors, medications, and personal behaviors cause or contribute to
birth defects.
The National Center on Birth Defects and Developmental Disabilities
(NCBDDD) at the CDC works to improve the health of children and adults
by preventing the occurrence of birth defects and developmental
disabilities; and promoting health and wellness among children and
adults with disabilities. The March of Dimes urges this Subcommittee to
increase funding for the Center to $125 million in fiscal year 2004.
This modest increase will provide the resources necessary to expand
many of the important activities supported by the Center. Of particular
interest to the March of Dimes is the prevention of birth defects for
which causes have already been identified and the identification of
causes for those which have not. A comprehensive program that includes
surveillance, research and prevention activities is being administered
by the National Center on Birth Defects and Developmental Disabilities
(NCBDDD). A modest increase of $15.9 million in funding for three
programs is a vital step to making progress in the fight against birth
defects.

Surveillance: State Cooperative Agreements to Improve Birth
Defects Tracking
NCBDDD provides funding to states to develop, implement, and/or
expand community-based birth defects tracking systems, programs to
prevent birth defects, and activities to improve access to health
services for children with birth defects. Surveillance forms the
backbone of a vital, functional and responsive public health network.
CDC is now supporting cooperative agreements with 28 states, each
funded between $100,000 and $200,000 a year for each of three years.
The March of Dimes encourages the Subcommittee to add $3.4 million
($7.5 million total funding) to state-based birth defects surveillance
activities. As you may be aware, resources have not been adequate to
fund all the states seeking CDC assistance. These additional resources
are needed to help all the states seeking CDC assistance and to
increase the level of assistance to states already receiving support.

Research: Regional Centers for Birth Defects Research and
Prevention
NCBDDD funds 10 regional Centers for Birth Defects Research and
Prevention, each receiving approximately $900,000 per year, to conduct
epidemiological research on birth defects. The centers are located in
Arkansas, California, Georgia, Iowa, Massachusetts, New Jersey, New
York, North Carolina, Texas, and Utah. These centers identify cases and
obtain data for inclusion in the National Birth Defect Prevention
Study, the largest case-control study of birth defects ever conducted.
Now the centers are using this data for studies on the effectiveness of
various methods for the primary prevention of birth defects, the
teratogenicity of various drugs, the environmental causes of birth
defects and the genetic factors that make people susceptible to
environmental causes of birth defects, the behavioral causes of birth
defects, and the costs of birth defects. The March of Dimes encourages
the Subcommittee to add $10 million ($16.3 million total funding) to
fund all these areas of promising research and continue operating all
the centers.

Prevention: Folic Acid Education Campaign
NCBDDD is conducting a national public and health professions
education campaign designed to increase the number of women taking
folic acid daily. Each year, an estimated 2,500 babies are born with
neural tube defects (NTDs), birth defects of the brain and spinal cord,
including anencephaly and spina bifida. CDC estimates that up to 70
percent of NTDs could be prevented if all women of childbearing age
consume 400 micrograms of folic acid daily, beginning before pregnancy.
Significant progress has been made and the rates of spina bifida have
declined 31 percent. With increased funding and in collaboration with
the National Spina Bifida Program, which also has a prevention focus,
this campaign could be expanded to reach more women of childbearing age
and their health care providers. The March of Dimes recommends an
appropriation of at least $5 million for fiscal year 2004 to promote
this lifesaving intervention.

NATIONAL INSTITUTES OF HEALTH

The March of Dimes joins the research community in recommending a
10 percent increase in funding for the National Institutes of Health
(NIH), which would bring total funding to $30 billion. A sustained
investment in medical research is vital to solving many of the diseases
and conditions affecting mothers and children. Specifically, and of
particular interest to the March of Dimes, are the research activities
at the National Institute of Child Health and Human Development.

National Institute for Child Health and Human Development
The mission of National Institute for Child Health and Human
Development (NICHD) is closely aligned with that of the March of Dimes.
The Foundation recommends an overall increase of 10 percent for NICHD.
With this increase in funding, NICHD could expand research in several
areas that are crucial to the health of mothers and children.
Additional funds would permit expansion of research into the causes of
birth defects, and also the causes of prematurity. Increased funding
would also enable NICHD to accelerate the timetable for implementing a
much-needed analysis of environmental influences on child health and
development that will be conducted as part of the National Children's
Study authorized by the Children's Health Act of 2000.
Pre-term labor and delivery is the number one problem in obstetrics
today and a serious problem in pediatrics. It is the leading cause of
neonatal mortality, and many babies born prematurely have serious
physical and mental disabilities, such as cerebral palsy, mental
retardation, chronic lung disease, and vision and hearing loss, that
last a lifetime. Prematurity is also a growing problem. Between 1991
and 2001, the annual percentage of newborns delivered preterm in the
United States increased from 10.8 percent to 11.9 percent. More than
476,000 babies in the United States-nearly 12 percent of all US babies-
were born prematurely in 2001. Prematurity is also one of the clearest
indices of racial disparities. Rates of preterm birth vary
significantly by race and ethnicity. In 2001, rates for blacks were
highest among all racial and ethnic subgroups--17.5 percent as compared
to 11 percent for white Americans.
The March of Dimes recommends increased funding of at least $50
million over the next five years to boost prematurity-related research
at NICHD, with particular emphasis on expanding the collaborative
networks for Maternal-Fetal Medicine Units and Neonatal Research. More
funds are needed to reveal the underlying causes of preterm delivery,
to identify prevention strategies and improve the treatment and
outcomes for infants born preterm.

HEALTH RESOURCES AND SERVICES ADMINISTRATION (HRSA)

Newborn Screening
One of the great advances in preventive medicine has been the
introduction of newborn screening. Newborn screening is a public health
activity used to identify certain genetic, metabolic, hormonal and/or
functional conditions in newborns. As the Committee members know, such
disorders, if left untreated, can cause death, disability, mental
retardation and other serious problems. Although nearly all babies born
in the United States undergo newborn screening tests for genetic birth
defects, the number and quality of these tests vary from state to
state. The March of Dimes recommends that every baby born in the United
States receive, at a minimum, a core set of 10 screening tests.
The March of Dimes proposes an appropriation of $25 million to
support HRSA's work with states to implement the heritable disorders
(newborn screening) program authorized in Title XXVI of the Children's
Health Act of 2000. This program is designed to strengthen states'
newborn screening programs; to improve states' ability to develop,
evaluate, and acquire innovative testing technologies; and to establish
and improve programs to provide screening, counseling, testing and
special services for newborns and children at risk for heritable
disorders.
Thank you for the opportunity to testify on the programs of highest
priority to the March of Dimes. The staff and volunteers of the March
of Dimes look forward to working with members of the Subcommittee to
improve the health of mothers, infants and children.

______

Prepared Statement of the American Dental Education Association (ADEA)

ADEA is the premier national organization that speaks for dental
education. It is dedicated to serving the needs of all 56 U.S. dental
schools, 731 U.S. dental residency programs, 266 dental hygiene
programs, 6,150 dental assisting programs, and 24 dental laboratory
technology programs, as well as the 11,332 full- and part-time dental
school faculty, more than 5,060 dental residents and the nation's
37,300 dental and allied dental students. It is at dental education
institutions that future practitioners and researchers gain their
knowledge; the majority of dental research is conducted; and
significant dental care is provided to many underserved low-income
populations, including individuals covered by Medicaid and the State
Children's Health Insurance Program (SCHIP).
Dental schools across the country are doing their part to increase
access to oral health care for underserved populations and to build
upon research for the good of all. According to a study conducted by
the American Dental Association,\1\ nearly half of all patients treated
at dental school clinics are covered by public assistance with a
majority of patients having an income of $15,000 or less. Examples of
the commitment dental education is making to improve access and build
the research capacity can be found in the states such as Pennsylvania,
Iowa, Texas, Mississippi, and South Carolina include:
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\1\ ``Study of Dental School Facilities and Programs,'' American
Dental Association, August, 1999.
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--In Pennsylvania, the University of Pittsburgh School of Dental
Medicine provides state-mandated dental screenings for
kindergarten, grades 3 and 7 at the Wilkinsburg School
District; while the Temple University School of Dentistry
provides services at its school-based dental clinic at Roberto
Clemente Middle School and at its rural dental clinic in
Wellsboro, in addition to providing dental and nutritional
services to HIV/AIDS patients at its Rosenthal Clinical Center.
--Iowa's large elderly population makes it imperative that students
build skills for treating older adults. Students at the
University of Iowa College of Dentistry spend 25 percent of
their senior year providing oral health care in extramural
programs, largely in community-based clinics.
--In Texas, the state's three dental schools are successful in
increasing access to oral health care. The University of Texas
Health Science Center at San Antonio Dental School provides
emergency care to indigent patients and provides pre-surgical
treatment to patients undergoing organ transplants and their
Department of Pediatric Dentistry staffs Santa Rosa Hospital's
dental clinics, which provides care to both patients being
treated for cancer, birth defects and other life-threatening
problems.
The Baylor College of Dentistry is the largest single provider of
oral health care services in the Dallas/Fort Worth area and the
University of Texas Health Science Center at Houston Dental Branch is
one of the primary sources of dental care for the city's rapidly
growing underserved populations.
--Mississippians directly benefit from primary care dentistry
training programs with more than 70 percent of all of the
University of Mississippi School of Dentistry's graduates
staying in state to practice. They practice in 68 of the
state's 82 counties, and many are in small towns and rural
areas where the need is greatest.
--Through funding from the National Institute of Health (NIH)
National Center for Research Resources the Medical University
of South Carolina College of Dental Medicine established a
Center of Biomedical Research Excellence in Oral Health that
addresses two health issues in which significant disparities
exist nationally and in the state--the relationship between
oral health and overall health (focusing on patients with
diabetes) and oral cancer.
Congress' commitment to sustained federal funding is one of the
keys that make these kinds of successes happen. Federal funding unlocks
the doors of promise in America--the promise of access to health care
for underserved communities, the promise to students who seek to
achieve their dream of becoming a dentist, and the promise that federal
investments made in health research will be implemented to benefit all
people in the United States.
Several federal programs play a significant role in responding
positively to the challenges of oral health disparities, dental
education, and diversity in the workforce that are outlined in the
Surgeon General's Report.\2\ The Report alerts Congress and the nation
to recognize the importance of oral health and the deleterious effects
of inadequate oral health care. It calls attention to the fact that the
burden of oral diseases and conditions is disproportionate among the
U.S. population. Reports from the General Accounting Office and the
National Governors Association corroborate these findings.
---------------------------------------------------------------------------
\2\ ``U.S. Surgeon General Report: Oral Health in America'', 2000.
---------------------------------------------------------------------------
Other significant challenges exist with regard to the
infrastructure of dental education and the oral health delivery system.
For instance:
--The ratio of professionally active dentist-to-population is
projected to continue declining, from its peak of 60:100,000 in
1994 to 54:100,000 in 2020.\3\ As a sizable portion of the U.S.
population has difficulty availing itself of needed or wanted
oral health care, the decline is creating concern as to the
capability of the dental workforce to meet emerging demands of
society and provide services efficiently.
---------------------------------------------------------------------------
\3\ ``Future of Dentistry,'' American Dental Association, Health
Policy Resources Center, 2001.
---------------------------------------------------------------------------
--Dental education debt has increased, affecting both career choices
and practice locations. In 2002, about 59 percent of
individuals who had educational debt graduated with debt over
$100,000, and nearly 30 percent had debt greater than $150,000.
The average educational debt for students with such debt was
$122,491.
--A crisis in the number of faculty and researchers threatens the
quality of dental education, oral, dental, and craniofacial
research, and, ultimately, access to necessary oral health care
for Americans. Presently, there are approximately 350 vacant
faculty positions at U.S. dental schools. The issue of access
to care cannot be addressed successfully without increasing the
numbers of dentists entering academia and research, and
--Lack of diversity and the number of under-represented minorities in
the oral health professions is disproportionate to their
distribution in the population at large. Their low rate of
applications and enrollment in dental schools forebodes their
continued under-representation in academia, research, and the
dental workforce.
Several of the important health education, research and training
programs for which we are making recommendations will be decimated if
the Administration's proposal to eliminate their funding is enacted. It
is imperative that Congress appropriate adequate funding for their
continuation and enhancement. They are essential to the health and
vitality of the nation. Consequently, the American Dental Education
Association requests:

(1) $15 million to fund the General Dentistry and Pediatric Dentistry
Residency Training programs
The ADEA strongly objects to the Bush Administration's elimination
of funding for the Title VII general dentistry and pediatric dentistry
residency programs. Eliminating funding for these programs runs
contrary to the Advisory Committee on Training in Primary Care Medicine
and Dentistry that recommended to the Secretary of HHS \4\ that Title
VII be ``expanded substantially'' with an ``increased budget level.''
---------------------------------------------------------------------------
\4\ ``Comprehensive Review and Recommendations: Title VII, Section
747 of the Public Health Service Act,'' November 2001.
---------------------------------------------------------------------------
General and pediatric dentistry residency training programs are
effective in increasing access to care while providing dentists with
the skills and clinical experiences needed to deliver a broad array of
oral health services to patients, including Medicaid and SCHIP
populations, as well as medically compromised patients.
Pediatric dentistry is the dental counterpart to general pediatric
medicine. Currently, there are only 3,800 pediatric dentists in the
country; some states have fewer than 10. Pediatric dentistry training
positions have only recently begun to expand as a direct result of
federal investment.
Dentists who complete primary care dental residency training are
better able to address a wide variety of oral health maladies without
referring patients to specialists. Each year approximately 165 students
enter one of the nation's 59 accredited pediatric dentistry programs,
while 1,484 students enter one of the country's 313 accredited general
dentistry programs.

(2) $135 million to fund the Health Professions Education and Training
Programs for Minority and Disadvantaged Students, including $3
million for the Faculty Loan Repayment Program
The President's budget proposes to eliminate funding for programs
that have been successful in creating the basic infrastructure for
educating a primary care workforce to help care for vulnerable
populations. However, the infrastructure that has been established by
previous federal investment requires sustained and increased support to
meet the challenges of diversifying the health care workforce,
addressing student indebtedness, eliminating faculty shortages, and
eliminating oral health care disparities in underserved communities.
The Centers of Excellence (COE) and the Health Careers Opportunity
Program (HCOP) play critical roles in preparing, recruiting and
retaining disadvantaged students in predoctoral health professions
schools. As the U.S. population becomes increasingly multicultural, so
must the faculties and students in academic dental institutions. The
federally funded COE and HCOP programs are key in assisting health
professions schools to prepare disadvantaged and minority students for
entry into dental, medical, pharmacy, and other health professions. The
federal government has a responsibility to help to develop a culturally
competent workforce that will reduce health care disparities related to
cultural factors.
Among the four dental schools that have an HCOP grant is the
University of California at San Francisco School of Dentistry. Its
program collaborates with three high schools, four universities, and
one community based organization. The program provides recruitment
activities, preliminary education during the academic year and summer,
financial aid information dissemination, facilitating entry activities,
counseling, mentoring and other services to develop a more competitive
applicant pool of students to enter and complete training in the field
of dentistry.
If the President's budget request were enacted, the Faculty Loan
Repayment Program (FLRP) that assists dentists and other qualified
clinicians to enter academia would be eliminated. It is the only
federal program that endeavors to increase the number of economically
disadvantaged faculty members. The program takes on additional
significance in light of current and predicated faculty shortages. ADEA
urges Congress to increase funding for the program and also broaden
eligibility for the Faculty Loan Repayment Program to faculty members
with qualifying student loan debt, regardless of their background.

(3) $19 million, a modest increase of $5.5 million over the fiscal year
2003 level, to fund the Ryan White HIV/AIDS Dental
Reimbursement Program of the Ryan White CARE Act (Part F)
Federal support for this program increases access to oral health
services for HIV/AIDS patients, while, at the same time, providing
dental students and residents the education and training necessary to
deliver oral health care to this population. This important program
accomplishes two appropriate objectives of the federal government--
service to patients of limited means and education of future
practitioners.
As a result of immune system breakdown, HIV/AIDS patients are more
susceptible to oral diseases, such as oral lesions that cause
significant pain and oral infection leading to fevers, weight loss, and
difficulty in eating, speaking, or taking medication. In fact, many of
the first physical manifestations of HIV infection are found in the
oral cavity. A dentist is often the first health care professional to
diagnose these patients.
Private insurance and Medicaid coverage for dental services is very
limited or simply unavailable for adults. This lack of adequate
reimbursement particularly affects those dental education clinics that
serve as the safety net for a significant number of Medicaid and HIV/
AIDS individuals. The Ryan White HIV/AIDS Dental Reimbursement Program
encourages treatment of patients by alleviating some of the financial
burden incurred by the dental education institutions that serve them.

(4) $420 million to fund the National Institute for Dental and
Craniofacial Research (NIDCR) in support of the American
Association for Dental Research (AADR) funding level request
The National Institute for Dental and Craniofacial Research is
deserving of enhanced federal funding. Past support has yielded
significant results applicable not only to oral health, but to health
in general. Through collaborative efforts with NIDCR, oral health
researchers in U.S. dental schools have built a base of scientific and
clinical knowledge that has been widely communicated and used to
improve oral health. Research is advancing investigations in bone
formation and craniofacial development, treatment of facial pain,
salivary gland disorders, the link between periodontal diseases and
pre-term low birth weight and arteriosclerosis, to name just a few.
The majority of dental, oral and craniofacial research is performed
in the nation's dental schools. The dental schools are a national
resource for the advancement through research of knowledge relevant to
the NIDCR mission. As such, ADEA supports NIDCR's dental school
initiative to develop and implement comprehensive institutional plans
to improve research support infrastructure, to recruit research
personnel, and to establish linkages to other research entities to, in
turn, augment and expand their own research capacity.
A prime example of NIDCR-funded research at a U.S. dental school
can be found at the University of Maryland where the dental school's
research program is strong in neuroscience related to pain, mechanisms
of bone growth and remodeling, dental disease, head and neck cancers,
AIDS research, and dentistry's role in the event of a bioterror attack.

(5) $213 million to fund the National Health Service Corps (NHSC) in
support of the President's funding level request
ADEA strongly supports the National Health Service Corps (NHSC)
Scholarship and Loan Repayment Programs that assist students with the
rising costs of financing their health professions education, while
promoting primary care access to underserved areas. It is critical that
the NHSC receive increased funding to meet the health needs in the
national rural and underserved communities. With the passage of the
Health Care Safety Net Amendments Act last session of Congress, ADEA
and the NHSC have begun exploring ways in which we can increase
participation in the Corps.

(6) $105 million for the Indian Health Service Dental Programs
The Indian Health Service Loan Repayment Program provides oral
health care service to Native Americans and Alaska Natives focusing on
the prevention and amelioration of oral health diseases. In exchange
for full-time clinical practices at one of the 280 hospital sites
located in 35 states, dentists receive up to $20,000 per year on their
qualified student loans in addition to a salary (2000 salary range was
$46,000-$82,000).

(7) $18 million to fund the Centers for Disease Control and Prevention
(CDC) Oral Health Program in support of the American Dental
Association's funding level request
The CDC Oral Health Program supports state and community-based
programs and communicates with the public to prevent oral disease and
reduce disparities in oral health. It works with states to establish
surveillance systems that provide valuable health information to assess
the effectiveness of programs and target them to populations at
greatest risk.
CDC funding and expert assistance strengthens state oral disease
prevention programs, allowing each state, territory or tribe to develop
the vital public oral health infrastructure and capacity to be able to
successfully support community based oral disease prevention programs.

(8) $20 million to fund the Dental Health Improvement Act, passed as
part of the Health Care Safety Net Amendments of 2002 (Public
Law 107-251)
A newly authorized program which now needs funding is the Dental
Health Improvement Act, which will assist states in developing
innovative dental workforce programs specific to their needs. Monies
could be used for a variety of initiatives including: increasing access
to oral health care for underserved populations, recruiting additional
dental school faculty and practitioners in states, developing a
prevention program which would include services such as water
fluoridation, dental sealants, nutritional counseling, and establishing
a state dental officer position or augmenting a current state dental
office to coordinate oral health and access issues.
In conclusion, ADEA and its membership, thanks the Committee for
the opportunity to present our views and budget requests for dental
education and research programs in fiscal year 2004. Continuing the
federal investment in these programs is vital. So too is the
development of a partnership between the federal government and dental
education programs to implement a national oral health plan that
guarantees access to dental care for everyone, ensures continued dental
health research, eliminates disparities, and eliminates workforce
shortages.
______

Prepared Statement of the National Rural Health Association

The National Rural Health Association (NRHA) thanks Chairman
Specter, Ranking Member Harkin and members of the Subcommittee for the
opportunity to submit this testimony for the record regarding fiscal
year 2004 appropriations for programs important to our nation's rural
health care delivery system. We believe we can offer you an insightful
look at the unique health care needs of rural and frontier Americans.
The NRHA and its membership are grateful for the funding provided
to rural health programs in fiscal year 2003 and the support shown for
rural health by Congressional leaders. In fiscal year 2003 the
Community Health Centers program, the National Health Service Corps,
State Offices of Rural Health received increased funding. In addition,
$5 million was added to the Rural Hospital Flexibility Grant Program to
help small hospitals respond to the requirements of HIPAA, upgrade
billing systems and implement quality improvement.
More than 62 million Americans live in rural and frontier areas.
More than 8 million rural residents are uninsured and another 4.5
million are underinsured. The federal programs profiled below have a
proven track record of expanding access to health care services in
rural areas, thereby ensuring that the benefits of health care are
available to all Americans, regardless of where they live.
The NRHA is a national nonprofit membership organization that
provides leadership on rural health issues. The association's mission
is to improve the health of rural Americans and to provide leadership
on rural health issues through grassroots advocacy, communications,
education and research. The membership of the NRHA is a diverse
collection of individuals and organizations, all of whom share the
common bond of an interest in rural health. Individual members come
from all disciplines and include hospital and rural health clinic
administrators, physicians, nurses, dentists, non-physician providers,
health planners, researchers and educators, state offices of rural
health and policy-makers. Organization and supporting members include
hospitals, community and migrant health centers, state health
departments and university programs.
One of the NRHA's top priorities is the National Health Service
Corps program. The National Health Service Corps (NHSC) is a federal
program aimed at encouraging health care professionals to practice in
underserved rural and urban areas. Since 1972, more than 20,000 NHSC
clinicians have fulfilled a pledge to serve rural and urban underserved
communities in exchange for scholarships or loan repayment. Today more
than 4.6 million people who would otherwise lack access to health care
are served by over 2,400 NHSC professionals. 60 percent of these
provide health care services to rural and frontier Americans. The NRHA
believes that the National Health Service Corps deserves funding in
fiscal year 2004 of $250 million to allow the program to provide access
to health care to many more underserved rural and frontier communities.
State offices of rural health coordinate rural activities and
interests across the state, provide information and technical
assistance to rural communities and help to improve recruitment and
retention of health professionals. State offices of rural health also
serve as coordinators for national programs such as the Rural Hospital
Flexibility Program and the State Children's Health Insurance Program.
State offices of rural health are funded by a 3:1 state to federal
match, with states providing three times the contribution of the
federal government. The NRHA is appreciative of the increase in fiscal
year 2003 to $8.5 million for State Offices of Rural Health, and
supports $12 million in funding for fiscal year 2004.
The Consolidated Health Centers Program is comprised of four parts:
Community Health Centers, Migrant Health Centers, Health Care for the
Homeless Programs and Public Housing Primary Care Programs. Currently
over 1,000 health centers serve more than 11 million patients.
Community health centers are an important part of the rural safety net,
providing care to the uninsured and underinsured who would otherwise
lack access to health care, including 5.4 million rural residents (1
out of 10). Community health centers focus on wellness and prevention
in addition to primary care services and foster community bonds through
consumer boards governing each center. President Bush's five year
Health Centers Initiative will add 1,200 new and expanded health center
sites to raise the number of people served each year to 16 million by
2006. To adequately meet this goal and ensure new community health
centers are added in rural areas, increased funding is necessary. The
NRHA supports the expansion of the community health center program and
advocates fiscal year 2004 funding of $1.769 billion.
The Rural Health Outreach and Network Development Grant Program
serves to support innovative health care delivery systems as well as
vertically integrated health care networks in rural America. Rural
Health Outreach and Network Development Grants help establish new
partnerships between health organizations and other community
institutions to improve the delivery of clinical care and enable health
care providers to be more efficient by sharing resources. According to
data collected on the Rural Health Outreach program, about 80 percent
of grantees have continued to provide services five years beyond their
federal grant period. Since 1991, over 3.2 million people in almost
every state have been served by the Outreach and Network Development
Grant Program. The grants provide up to $200,000 a year for three years
to each grantee.
The Huntingdon County Wellness Improvement Network and System
Project is an Outreach grantee in Huntingdon, Pennsylvania. Huntingdon
County is a rural community designated as a Health Professional
Shortage Area (HPSA). The Project's goal is to develop and implement
strategies to increase the number of health care professionals in the
county; strengthen and integrate the health care and social service
delivery systems; promote health, wellness, and disease-prevention to
reduce risk and cost of chronic behaviorally-related diseases; improve
the availability of clinical data to monitor outcomes; provide better
quality and coordinated services; and support the expansion of services
to meet community health needs. The grant supports a network membership
which consists of the local hospital and several community-based
agencies.
One Outreach grantee in rural Iowa is the Horn Memorial Hospital,
in Ida Grove, Iowa, whose Timely Life Care (TLC) Project work to
improve the quality of life for the chronically ill and provide
caregiver support and education to the targeted population of persons
50 years and older. The TLC Project provides a palliative approach to
patients whose disease is not responsive to curative treatment. The
grant helps provide services that include home visits, respite,
telemonitoring, education, counseling, pain management, and medication
review. Community collaboration also plays a vital role in the program,
with collaborators including a hospital, primary health care centers
and rehabilitation centers.
The NRHA advocates $60 million in fiscal year 2004 for the Rural
Health Outreach and Network Development Grant Program. Each year
applications for this program greatly exceed funds available. Rural
Health Policy Development (Research) funds health policy research
focusing on the implications for rural Americans of decisions made by
policymakers in Washington. The rural health research centers provide
data on issues such as Medicare reimbursement, workforce and managed
care in rural areas. The NRHA advocates $20 million in fiscal year 2004
for Rural Health Policy Development (Research). In adding special
project earmarks to this line item, the NRHA strongly urges the
Administration not to let the base funding for Rural Health Policy
Development to fall below the fiscal year 2003 level of $9 million.
The Rural Hospital Flexibility Grant Program allows small, low-
volume hospitals to convert to Critical Access Hospitals (CAHs), which
provide needed emergency, outpatient and short-stay inpatient services.
CAHs are encouraged to develop a network with other full-service
hospitals in their region in order to provide a full range of needed
services. It also helps communities to ensure that needed services,
such as emergency medical services, will be available to their
citizens. The Flex Program has been a lifeline to many communities,
allowing them to keep their hospital open while networking different
types of providers to ensure a continuum of care is available to rural
residents. The NRHA advocates $50 million in fiscal year 2004 for the
Rural Hospital Flexibility Grant Program.
The Small Hospital Improvement Program provides funds to help small
hospitals respond to the requirements of HIPAA, upgrade billing systems
and implement quality improvement. The NRHA advocates $50 million in
funding for this program in fiscal year 2004.
The NRHA is very concerned about the shortage of health
professionals in rural areas and supports health professions programs
that train the future workforce for the rural health care
infrastructure. Many health professions grant programs funded by the
Department of Health and Human Services have a rural focus or
component. Graduates of training programs with a rural component are
more likely to practice in rural areas, therefore funding of these
programs is critical to ensuring access to health care for rural
residents.
Included in the Bureau of Health Professions (BHPr) are several
programs that help to support the delivery of health care services in
rural areas. The Primary Care Training cluster includes General
Pediatrics, General Internal Medicine, Family Medicine, General
Dentistry, Pediatric Dentistry, and Physician Assistants, provides for
the education and training of primary care physicians, dentists, and
physician assistants to improve access and quality of health care in
underserved areas.
In the Interdisciplinary, Community-Based Linkages cluster of BHPr,
the Area Health Education Centers have been a critical part of
delivering the resources of academic health centers to students and
clinicians in more remote rural and frontier areas. The Quentin N.
Burdick Program for Rural Health Interdisciplinary Training facilitates
collaboration between academic institutions and rural health care
providers to improve the recruitment and retention of health
professionals to serve rural areas.
The Public Health Workforce Development programs in BHPr are
designed to increase the number of individuals trained in public health
as well as to update the training of current public health
professionals. Recent bioterrorism challenges and threats have
highlighted the extent to which the public health infrastructure in the
United States is uneven in its ability to respond to these challenges.
Data compiled by the U.S. Department of Health and Human Services shows
that less than half of the nation's public health agencies have the
capacity to provide essential public health services. At this time when
public health professionals are being asked to take on a critical role
in surveillance and responding to bioterrorist attacks and threats, the
public health workforce development deserves continued support by the
federal government.
The Nursing Workforce Development programs provide training for
basic and advanced degree nurses to improve the access to, and quality
of, health care in underserved areas. Health care entities across the
nation are experiencing a crisis in nurse staffing, caused in part by
an aging workforce and lack of young people entering the profession.
This crisis is felt more acutely in rural and frontier areas, which
have a harder time recruiting staff and have trouble competing with the
higher salaries and benefits offered in suburban areas. The Nursing
Workforce Development programs are critical to making sure that health
care professionals are available to provide services in underserved
areas.
The NRHA is concerned that the President's proposed budget includes
a drastic cut in funding for Health Professions programs and advocates
funding of $940 million (including $250 million for National Health
Service Corps) in fiscal year 2004 for these programs.
Telehealth services address essential access to health care needs
for rural Americans. These innovative programs currently provide
medical care, technical assistance, distance learning and training
programs to rural Americans in more than 30 states. The NRHA advocates
$36 million for this program in fiscal year 2004. In adding special
project earmarks to this line item, the NRHA strongly urges Congress
not to let the base funding for Telehealth to fall below $6 million.
The Community Access Program (CAP) provides grants to health care
providers to build integrated health care networks to serve uninsured
and underinsured local residents. Because rural communities have a high
rate of uninsured, CAP has been an essential program in various rural
communities throughout the nation. The NRHA urges Congress to continue
funding for this program, and advocates funding of $125 million in
fiscal year 2004 for CAP.
The NRHA thanks Chairman Specter and the members of the
subcommittee for the opportunity to submit testimony for the record on
vital rural health programs supported by the federal government. We
look forward to working with you as the annual appropriations process
moves forward, and stand ready to help the Subcommittee and the
Congress to ensure access to quality health care services for rural and
frontier Americans.
______

Prepared Statement of the Coalition of Northeastern Governors

The Coalition of Northeastern Governors (CONEG) is pleased to
provide this testimony to the Senate Subcommittee on Labor, Health and
Human Services, and Education regarding fiscal year 2004 appropriations
for the Low Income Home Energy Assistance Program (LIHEAP). The
Governors appreciate the Subcommittee's consistent support for the
LIHEAP program, particularly the action to increase program funding
this year. We also recognize the difficult decisions facing the
Subcommittee this year. In light of sharply higher home energy prices
and a lagging economy, we request the Subcommittee to provide $3
billion for LIHEAP in regular fiscal year 2004 funding and to provide
advance appropriations for fiscal year 2005, with the authority to
permit the release of emergency funds for unforeseen circumstances,
such as price spikes in natural gas or heating oil, severe weather and
other potential emergencies.
LIHEAP is a valuable tool in making home energy affordable for over
4 million of the nation's very low-income households--the elderly and
disabled on fixed incomes and families with young children. Recent data
shows that the percentage of income spent on home energy by these
households can be four times higher than average households. For many
of these households, annual income is simply not sufficient to pay high
winter heating bills, even in periods of economic growth. Many low-
income residents are forced to make dangerous choices between heating
their homes or purchasing food or vital medications.
The recent rise in winter heating fuel prices has hit these
vulnerable citizens especially hard. The Northeast is heavily dependent
on deliverable home heating fuels such as home heating oil, kerosene,
and propane. Price volatility in these fuels adversely affects the low-
income households who, without the disposable income to purchase fuels
off-season, typically enter the market when both the demand for and
price of fuels are high.
This winter, sharp increases in the price of home heating fuels,
increased joblessness and a lagging economy have created a heightened
demand on the states' already-stretched LIHEAP programs. States across
the country have seen significant increases in their regular caseloads
as well as in requests for emergency assistance from those households
in imminent danger of a fuel service cut-off. The projected need far
outweighs the available funding, with only a fraction of eligible
households nationwide--about 15 percent--being served at recent LIHEAP
funding levels.
An increase in the regular LIHEAP appropriation to $3 billion for
fiscal years 2004 and 2005 will enable states across the nation to
reach more of those vulnerable citizens in need of assistance and more
fully implement cost-effective measures to meet their continuing energy
needs. Today, most winter heating programs have exhausted their program
resources at the end of the heating season. As a result, they have
limited ability to assist families who, in arrears on heating bills,
face the prospect of having their home heating source cut off. In
addition, without funds to carryforward to the new heating season,
State LIHEAP programs lack the capability to undertake the ``pre-buy''
programs that help stabilize heating fuel prices for low-income
households and expand the reach of limited program funds. An increased
federal appropriation, and advance funding, would allow states to
manage the program resources in a manner to better take advantage of
market opportunities.
Enactment of advance funding is vital to the states' program
planning activities for the coming heating season. In the Northeast,
where the heating season begins in early October, states generally
spend up to 70 percent of the LIHEAP funds during the first two
quarters of the fiscal year. Therefore, states must begin to plan and
do program outreach in the spring and summer if they are to begin their
LIHEAP program as soon as the new fiscal year starts. Advance funding
helps ensure that states have the necessary funds to open their
programs and provide timely assistance to low-income families who lack
the financial resources to bear the initial costs of deliverable home
heating fuels.
The current uncertainty of world energy markets underscores the
importance of states being able to prepare for the potential of
volatile energy prices. These preparedness activities, while critical,
cannot fully shield our lowest-income citizens from the impacts of
higher heating fuel prices. Your support for fiscal year 2004 LIHEAP
appropriations at the $3 billion level and the enactment of advance
fiscal year 2005 appropriations is urgently needed to enable our states
to help mitigate the potential life-threatening emergencies and
economic hardship that confront the region's most vulnerable citizens.
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.

______

Prepared Statement of the Society of Thoracic Surgeons and the American
Association for Thoracic Surgery

AHRQ RESEARCH IS ESSENTIAL TO CQI IN HEALTH CARE

The Society of Thoracic Surgeons and the American Association for
Thoracic Surgery represent essentially all practicing cardiac and
thoracic surgeons in the United States. We strongly support the
extremely important work being done by the Agency for Healthcare
Research and Quality (AHRQ) in determining best medical practices and
in translating this knowledge to actual clinical implementation.
Important as is the research work of the NIH, we have learned from
recent reports of the Institute of Medicine (most particularly the
IOM's second study, Crossing the Quality Chasm) that major improvements
are not only possible, but urgently needed, in the quality of care in
the United States. This is not as simple as finding obvious ``errors''
in medical practice; progress in medical quality of care often depends
on educational and other translational work that promotes the wide
adoption of best practices.
Such translational work to extend the use of best medical practices
is not the function of NIH; the responsibility falls to AHRQ. In the
context of our country's commitment to medical research, AHRQ's funding
at present is minimal and should be significantly increased.
We speak from first-hand experience. In 2001, AHRQ funded research
and analysis of data in the existing risk-stratified data base on
outcomes in Coronary Artery Bypass and Graft Surgery maintained by the
Society of Thoracic Surgeons since 1989. The STS National Cardiac
Database (STS NCD) is the largest voluntary clinical database in
medicine with over 2.1 million patient records harvested since its
inception. This AHRQ-funded analysis demonstrated that wider adoption
of two practices--pre-operative use of beta blockers and, in older
patients, use of the Internal Mammary Artery for at least one bypass
(use of the IMA was already accepted as state of the art for younger
patients) would significantly improve outcomes--that is, that adoption
of these practices would save lives. These findings were published in
the Journal of Thoracic and Cardiovascular Surgery and in JAMA in May
2002.
In addition, in 1999 AHRQ awarded the Society a $1.4 M grant award
to scientifically validate the ability of a Medical Specialty Society
to undertake CQI on a national scale. The STS implemented a national
randomized clinical trial to determine if a low-intensity educational
campaign would lead to faster adoption of these improved methods of
patient treatment.
The AHRQ grant was the first national randomized trial in Quality
Improvement in the surgical arena, with the potential to impact on
overall CABG morbidity and mortality nationwide.\1\ Two regional STS
organizations, in Iowa and Colorado, have been created as a result of
this grant effort; importantly, both have created unique partnerships
with CMS Quality Improvement Organizations in their respective states.
---------------------------------------------------------------------------
\1\ T. Bruce Ferguson Jr., Eric D. Peterson, Laura P. Coombs, Mary
E. Eiken, Meghan Carey, Elizabeth R. DeLong, The Society of Thoracic
Surgeons, Chicago, IL and the Duke Clinical Research Institute, Durham,
NC. CQI in CABG: A National Randomized Trial in Quality Improvement
Presented at the Late Breaking Clinical Trials session of the American
Heart Association Scientific Sessions, November 19, 2002.
---------------------------------------------------------------------------
Results of the trial are positive, demonstrating that a multi-
faceted, physician-led low-intensity effort can have an impact on the
adoption of care processes into national practice. Adoption of these
two practices has been significantly more rapid in the two states in
which the educational QI effort was carried out than in the randomized
control state. This successful CQI in CABG trial is a model for large-
scale QI efforts across all disciplines of medicine.
Results from the trial were presented at the Late Breaking Clinical
Trials session of the American Heart Association Scientific Sessions in
November 2002. A manuscript based on the results of this trial has been
submitted for possible publication in JAMA. Full funding of AHRQ is
essential to the continuing improvement of medical practice through CQI
projects similar to this groundbreaking work. Only AHRQ is carrying out
research with this kind of immediate impact on patients' lives.
We ask that the Congress recognize the importance of the work being
done by AHRQ through significant increases in its funding for fiscal
year 2004. AHRQ programs in Continuous Quality Improvement (CQI) should
be specifically

______

Prepared Statement of the National Association for State Community
Services Programs

The National Association for State Community Services Programs
(NASCSP) thanks this committee for its continued support of the
Community Services Block Grant (CSBG), and seeks an appropriation of
$650 million for the state grant portion of the CSBG, the same as its
fiscal year 2003 appropriation. We are requesting flat funding this
year in order to continue the efforts of the Community Services Network
in assisting those families remaining on welfare with the intensive
services they need to transition to work and to assist low-income
workers in remaining at work through supportive services such as
transportation and child care. These funds will also continue to assist
states in developing services in the four percent of counties that are
not currently served by the CSBG.
The fiscal year 2003 appropriation of CSBG included language
regarding the use of the block grant at the state level. Many of the
states have statues regarding the use of CSBG funds, which are state,
legislated. Passing national legislation regarding the distribution of
the block grant at the state level preempts the prerogative of states.
NASCSP urges the committee to discourage the incorporation of
authorization language in the appropriations act.
NASCSP is the national association that represents state
administrators of the Community Services Block Grant (CSBG), and state
directors of the Department of Energy's Low-Income Weatherization
Assistance Program.

BACKGROUND

The states believe the Community Services Block Grant (CSBG) is a
unique block grant that has successfully devolved decision making to
the local level. Federally funded with oversight at the state level,
the CSBG has maintained a local network of over 1,120 agencies which
coordinate nearly $7.5 billion in federal, state, local and private
resources each year. Operating in more than 96 percent of counties in
the nation and serving nearly ten million low-income persons, local
agencies, known as Community Action Agencies (CAAs), provide services
based on the characteristics of poverty in their communities. For one
town, 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 looked to 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 was setting the standard for
private-public partnerships that could work to the betterment of local
communities and 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.

MAJOR CHARACTERISTICS OF THE COMMUNITY SERVICES NETWORK

Leveraging capacity.--For every CSBG dollar they receive, CAAs
leverage $4.46 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.
Volunteer mobilization.--CAAs mobilize volunteers in large numbers.
In fiscal year 2001, the most recent year for which data are available,
the CAAs elicited more than 32 million hours of volunteer efforts, the
equivalent of almost 15,000 full-time employees. Using just the minimum
wage, these volunteer hours are valued at nearly $165 million.
Locally directed.--Tri-partite boards of directors guide CAAs.
These boards consist of one-third elected officials, one-third low-
income persons and one-third representatives from the private sector.
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.
Adaptability.--CAAs provide a flexible local presence that
governors have mobilized to deal with emerging poverty issues.
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.
Accountable.--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.
The statutory goal of the CSBG is to ameliorate the effects of
poverty while at the same time working within the community to
eliminate the causes 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.

WHO DOES THE CSBG SERVE?

National data compiled by NASCSP show that the CSBG serves a broad
segment 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 2000:
--70 percent have incomes at or below the poverty level; 47 percent
have incomes below 75 percent of the poverty guidelines. In
2000, the poverty level for a family of three was $14,150.
--Only 49 percent of adults have a high school diploma or equivalency
certificate.
--35 percent of all client families are ``working poor'' and have
wages or unemployment benefits as income.
--17 percent depend on pensions and Social Security and are therefore
poor, former workers.
--Fewer than 16 percent receive cash assistance from TANF.
--Nearly 60 percent of families assisted have children under 18 years
of age.

WHAT DO LOCAL CSBG AGENCIES DO?

Since Community Action Agencies 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 daycare 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. 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:
--employment and training programs
--transportation and child care for low-income workers
--individual development accounts
--micro business development help for low-income entrepreneurs
--a variety of crisis and emergency safety net services
--local community and economic development projects
--housing and weatherization services
--Head Start
--energy assistance programs
--nutrition programs
--family development programs
--senior services
CSBG funds many of these services directly. Even more importantly,
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. 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. Sixty percent (60) 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 department personnel, tap into religious groups 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 may keep a low-income elderly couple in their home. CAAs
also coordinate the Weatherization Assistance Program 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, as well as food
pantries.

EXAMPLES OF CSBG AT WORK

Since 1994, CSBG has implemented Results-Oriented Management and
Accountability practices whereby the effectiveness of programs is
captured through the use of goals and outcomes measures. Below you will
find the network's first nationally aggregated outcomes achieved by
individuals, families and communities as a result of their
participation in innovative CSBG programs during fiscal year 2001:
--70,360 participants gained employment with the help of community
action (42 states reporting)
--17,426 participants retained employment for 90 days or more (24
states reporting)
--32,603 households experienced an increase in income from
employment, tax benefits or child support secured with the
assistance of community action (28 states reporting)
--12,662 families continued to move from homelessness to transitional
housing (23 states reporting)
--33,795 families moved from substandard to safe, stable housing (26
states reporting)
--1,861 families achieved home ownership as a result of community
action assistance (16 states reporting)
--22,903 participants achieved literacy or a GED (32 states
reporting)
--12,846 participants achieved post secondary degree or vocational
education certificate (22 states reporting)
--506,545 new service ``opportunities'' were created for low-income
families as a result of community action work or advocacy,
including 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 (28 states reporting)
All the above considered, NASCSP urges this committee to maintain
funding the CSBG grant to the states at $650 million.
______

Prepared Statement of the American Heart Association

Every 33 seconds another life is taken. Our parents, spouses,
children and friends are all potential victims of a disease that is
responsible for the deaths of nearly 40 percent of Americans. Heart
disease, stroke and other cardiovascular diseases remain America's
leading cause of death and a major cause of permanent disability.
The American Heart Association works to reduce disability and death
from heart disease, stroke and other cardiovascular diseases. We
commend this Committee for completing the doubling of the National
Institutes of Health budget and for making funding for the Centers for
Disease Control and Prevention a priority. But, we are concerned that
our government is still not devoting sufficient resources for research
and prevention to America's No. 1 killer--heart disease--and to our
country's No. 3 killer--stroke.

STILL NUMBER ONE

Cardiovascular diseases represent a continuing crisis of epidemic
proportions. Nearly 62 million Americans--1 in 5--suffer from one or
more of these diseases, including men, women and children of all ages.
More than half of those who suffer from cardiovascular diseases are
under age 65. Hundreds of millions of Americans have major risk factors
for these diseases--an estimated 50 million have high blood pressure,
42 million adults have elevated blood cholesterol (240 mg/dL or above),
nearly 49 million adults smoke, more than 129 million adults are
overweight or obese and nearly 11 million have proven diabetes. As the
baby boomers age, the number of Americans afflicted by these often
lethal and disabling diseases will increase substantially.
Cardiovascular disease costs Americans more than any other disease--an
estimated $352 billion in medical expenses and lost productivity in
2003. Heart disease is the major cause of premature, permanent
disability of American workers, accounting for nearly 20 percent of
Social Security disability payments. Heart defects are the most common
birth defect and cause more infant deaths than any other birth defect.
Stroke is a leading cause or permanent disability.

HOW YOU CAN MAKE A DIFFERENCE

Now is the time to capitalize on a century of progress in
understanding heart disease, stroke and other cardiovascular diseases.
According to a 1999 expert panel supported by this Committee, America's
progress in reducing the death rate from cardiovascular disease has
slowed, suggesting that new strategies against these killers are
needed. The panel also reported that there are striking differences in
cardiovascular disease death rates by race/ethnicity, socioeconomic
status and geography. But promising, cost-effective breakthroughs in
treatment and prevention are on the horizon. A continued, sustained
investment in the NIH budget and appropriate funds for the NIH heart
disease and stroke budget will support promising and critically needed
new initiatives and the translation of that research into effective
clinical and community programs. For fiscal year 2004, we urge you to:
--Appropriate $30 billion (a 10 percent increase over fiscal year
2003 funding) for the NIH--to provide a continued, sustained
investment in life-saving medical research.--NIH research
provides new treatment and prevention strategies, cuts health
care costs, creates jobs and maintains America's status as the
world leader in the biotechnology and pharmaceutical
industries.
--Provide $2.5 billion for NIH heart research and $348 million for
NIH stroke research.--Researchers are on the brink of advances
to greatly enhance prevention and to provide new treatments so
you and your loved ones can be spared the pain and suffering of
heart disease and stroke.
--Allot $75 million for the CDC's State Heart Disease and Stroke
Prevention Program to elevate up to an additional 10 states
from planning to program implementation and continue to support
the other currently funded states.--Science must be made
applicable through community programs that encourage Americans
to make healthful lifestyle choices to prevent and control
heart disease and stroke.
--Support $42.5 million to continue to help our communities buy
automated external defibrillators (AEDs) and to train emergency
and lay responders to use them.--Rural Access to Emergency
Devices Act is part of Public Law 106-505 and Community Access
to Emergency Defibrillation Act is part of Public Law 107-188.

HEART AND STROKE RESEARCH BENEFITS ALL AMERICANS

Thanks to advances in addressing risk factors and in treating
cardiovascular diseases, more Americans are surviving heart disease and
stroke. Heart disease and stroke research and prevention breakthroughs
are saving and improving lives. Several examples follow.
Stents.--Each year more than 1 million angioplasty procedures are
performed to widen narrowed arteries to the heart and stents (wire mesh
tubes used to prop open an artery) are now used in nearly 80 percent of
angioplasty procedures. However, within six months, 20 to 40 percent of
procedures must be repeated because the artery narrows again. The
development of stents that can deliver drugs to prevent this
renarrowing will significantly improve the subsequent course for many
individuals.
Surgery to Reduce Risk for Stroke.--Often surgeons can prevent
stroke by removing plaque buildup when one of the main arteries to the
brain is severely narrowed. Research has defined the patients for whom
this surgery is most helpful, as well as those for whom medical
treatment is the better choice. An estimated 124,000 such procedures
are performed each year.
State-of-the-Art Life-Extending Drugs.--Research has produced
amazing new drugs to help prevent and treat heart disease and stroke.
Drugs to control blood pressure and cholesterol are more effective than
ever in saving lives and enhancing quality of life for millions of
Americans. Some of these drugs can prevent heart attack and stroke.
When prevention fails, primary angioplasty, opening the blocked artery
to restore blood flow, and ``clotbuster'' drugs, such as tPA, can
greatly reduce the size of heart attacks and the resulting disability.
In stroke, the use of tPA, within 3 hours of the onset of symptoms, can
restore blood flow and reduce chances of permanent disability by 33
percent, saving health care costs. These treatments offer hope for an
estimated 1.1 million Americans who will suffer a heart attack and the
more than 600,000 who will have a clot-based stroke this year.
Life-Saving Devices.--Defibrillators have been made small enough to
be implanted and smart enough to read the heart's rhythm and restore a
normal rhythm when needed. Recent research has suggested that many
individuals at risk of sudden cardiac death after a heart attack can
have their lives prolonged by these remarkable devices.
We commend Congress for fulfilling its historic commitment to
double the NIH budget. We join other members of the research community
in advocating for an fiscal year 2004 appropriation of $30 billion for
the NIH to provide a continued, sustained investment in life-saving
medical research and encourage continued investigation into new
therapies. The NIH budget for heart diseases and stroke remains
disproportionately under funded compared to the enormous burden these
diseases place on our nation and the numerous promising scientific
opportunities that could advance the fight against these disorders.
Despite significant NIH budget increases and the fact that heart
disease, stroke and other cardiovascular diseases meet the NIH's
criteria for priority setting (public health needs, scientific quality
research, scientific progress potential, portfolio diversification and
adequate infrastructure support), NIH still invests only 8 percent of
its budget on heart research and a mere 1 percent on stroke.
We have a particular interest in individual NIH components that
relate directly to our mission. Our funding recommendations for these
institutes follow.

HEART RESEARCH CHALLENGES AND OPPORTUNITIES FOR NHLBI

Significant advances have been made possible by more than 50 years
of American Heart Association-sponsored research and more than a half-
century of investment by Congress in the National Heart, Lung, and
Blood Institute. However, while more Americans are surviving heart
disease and stroke, these diseases can cause permanent disability,
requiring costly medical care and loss of productivity and quality of
life. Clearly more work is needed if we are to win the fight against
heart disease and stroke.
Neither the NHLBI budget nor its heart and stroke-related budget
kept pace with the campaign to double the NIH budget. We urge this
Committee to appropriate funding for the NHLBI and for its heart
disease and stroke-related budgets to support and expand current
activities and to invest in promising and critically needed new
initiatives to aggressively advance the fight against heart disease and
stroke. To accomplish this goal, we advocate a fiscal year 2004
appropriation of $3.5 billion for the NHLBI, including $2.1 billion for
heart disease and stroke-related budgets. Several challenges and
opportunities to advance the battle against heart disease are
highlighted below.
Recovery of Heart Function with Circulatory Assist.--Nearly 5
million Americans live with the effects of heart failure, which kills
more than 51,000 each year. Another 550,000 Americans will be diagnosed
with this often-disabling condition this year. Because their damaged
hearts cannot pump enough blood to meet their body's needs, victims
often suffer fatigue and breathlessness. Fluid also builds up in other
parts of their body, such as the ankles. The only treatment for
sufferers of end-stage heart failure is a heart transplant. Since there
is a severe shortage of hearts available for transplant, now mechanical
circulatory assist devices are typically used to stabilize these
patients until a suitable donor heart becomes available. With
additional funding, a planned research program would capitalize on the
amazing observation that the ``rest'' provided by mechanical
assistance, in some cases, enables the heart to recover sufficiently to
resume pumping blood on its own. Program goals include determination of
whether sustained heart recovery is achievable through circulatory
assist devices, characterization of patients who would likely benefit
and study of other therapies that may improve outcomes.
Specialized Centers of Clinically Oriented Research (SCCOR) in
Pediatric Heart Development.--Heart defects remain the most common
birth defect and cause more infant deaths than any other birth defect.
They cost an estimated $3 billion a year. About 2 million American
adults and children live with the often-disabling consequences of heart
defects existing at birth; and more than 4,300 die each year. An
additional 40,000 babies will be born this year with heart defects;
nearly 2,000 die before their first birthday. At least 35 types of such
defects have been identified, ranging from simple defects to complex
malformations. Ranging from existing at birth heart defects, disorders
of heart function and heart rhythm, and acquired heart disease,
pediatric heart disease is an important public health problem. With
additional resources, a planned SCCOR program could enhance the
prevention, diagnosis and treatment of these disorders by stimulating
and fostering multidisciplinary clinical and basic research.
Pediatric Mechanical Circulatory Support Research and
Development.--A recent NHLBI-supported study showed that circulatory
assist devices, such as left ventricular assist devices, increased
survival rates and quality of life for adult patients. But, such
devices are not available for infants and children suffering from heart
failure due to heart defects existing at birth and acquired heart
disease. Additional resources are needed for planned research that
would develop and evaluate pediatric circulatory assist devices. Such a
device could provide short, intermediate or long-term lifesaving
support for infants and children waiting for a heart transplant or
development of new surgical or other therapies.
Diagnostic Screening Test for Salt Sensitivity.--About 50 million
Americans have high blood pressure, the most critical stroke risk
factor and a leading cause of heart attack and heart failure. The cause
of 90 to 95 percent of high blood pressure cases is not known, but it
is easily detected and usually controllable. Of those with high blood
pressure, 32 percent are unaware they have it. Because excess dietary
salt is a key risk factor for high blood pressure, public health
officials caution all Americans to limit salt intake. Thus, the ability
to identify those who are likely to benefit from salt restriction would
provide strong incentives for susceptible people to heed the message.
More resources would allow the NHLBI to begin planned development of a
noninvasive or minimally invasive, rapid, practical diagnostic test for
salt sensitivity, i.e., the propensity for an individual to experience
an increase in blood pressure in response to a salt-rich diet. The
NHLBI would involve the small business community in developing such a
diagnostic test.

STROKE RESEARCH CHALLENGES AND OPPORTUNITIES FOR NINDS

A major cause of permanent disability and a key contributor to
late-life dementia, stroke is America's No. 3 killer. Many of America's
4.7 million stroke survivors face debilitating physical and mental
impairment, emotional distress and huge medical costs. About 1 of 4
stroke survivors is permanently disabled. An estimated 700,000
Americans will suffer a stroke this year; and nearly 170,000 will die.
Considered a disease of the elderly, stroke also strikes newborns,
children and young adults.
The NINDS stroke budget did not keep pace with the NIH doubling
initiative. We urge you to provide sufficient funding for the NINDS to
support and expand current activities and to invest in promising and
critically needed new initiatives to aggressively prevent stroke,
protect the brain during stroke and enhance rehabilitation. To
accomplish this goal, we advocate an fiscal year 2004 appropriation of
$1.8 billion for the NINDS, including $191 million for stroke. Some
challenges and opportunities follow.
Strategic Stroke Research Plan.--As a result of report language
provided by this Committee during the fiscal year 2001 appropriations
process, the NINDS convened a Stroke Progress Review Group. This
Group's report is serving as a blueprint for a long-range strategic
plan on stroke research. They identified critical gaps in stroke
knowledge and outlined five research priorities and seven resource
priorities that would stimulate stroke research. Increased resources
are needed to implement the first year of this plan.
Emerging Stroke Risk Factors.--More Americans are controlling major
stroke risk factors, such as high blood pressure and smoking, yet the
number of people falling victim to stroke continues to rise. Scientists
are defining new stroke risk factors, re-examining existing ones and
reconsidering the long-held belief that no difference exists in risk
between young and older patients with similar risk factors. Researchers
are studying heart valve disease, irregular heartbeats, the role of
inflammation in clogging of arteries, and the long-term effects of
previous high blood pressure. Increased funding to study these areas
may lead to new ways to prevent stroke.
Therapeutic Strategies for Stroke.--Several major clinical trials
have identified new methods for preventing and treating stroke in high-
risk populations. However, with the increased number of strokes, and
with the disparities evident in the treatment of stroke, new ways to
prevent strokes, to raise awareness and to better treat strokes need to
be developed and evaluated. Funding for new clinical studies is crucial
for developing cutting-edge stroke treatment and prevention.
Stroke Education.--Less than 5 percent of patients eligible for
tPA--the only FDA approved emergency treatment for clot-based stroke--
receive it. As a member of the Brain Attack Coalition, organizations
committed to fighting stroke, we work with the NINDS to increase public
awareness of stroke symptoms and to call 9-1-1. Together, we launched a
public education campaign, Know Stroke, Know the Signs. Act in Time,
and we are striving to develop systems to make tPA readily available to
appropriate patients. When these measures are implemented, stroke
treatment will change from supportive care to early brain-saving
intervention. More funding is needed to educate the public and health
professionals about stroke.

RESEARCH IN OTHER NIH INSTITUTES BENEFIT HEART DISEASE & STROKE

Critical research seeking to prevent and find better treatments for
heart disease, stroke and other cardiovascular diseases is supported by
other NIH institutes and centers such as the National Institute on
Aging, the National Institute of Diabetes and Digestive and Kidney
Diseases, the National Institute of Nursing Research and the National
Center for Research Resources. It is important to provide sufficient
additional resources for these entities to continue and expand their
critical work.

AGENCY FOR HEALTHCARE RESEARCH AND QUALITY

The lead health care quality agency, the AHRQ acts as a ``science
partner'' with public and private health care sectors in improving
health care quality, reducing health care costs and broadening access
to essential services. The AHRQ is an active participant in developing
evidence-based information needed by consumers, providers, health plans
and policymakers to improve health care decision making. We join with
the Friends of AHRQ in advocating an appropriation of $390 million for
the AHRQ to improve health care quality, reduce medical errors and
expand the availability of health outcomes information.

CENTERS FOR DISEASE CONTROL AND PREVENTION

Prevention is the best way to protect Americans' health and ease
the huge financial burden of disease. Commitment cannot stop at the
laboratory door. Resources must be made available to bring research to
places where heart disease and stroke live--the towns and neighborhoods
of America.
The CDC sets the pace on prevention. It builds a bridge between
what we learn in the lab and how we live in communities. We advocate an
fiscal year 2004 appropriation of $7.9 billion for the CDC, with a $350
million increase for state-based chronic disease prevention and health
promotion programs.
Thanks to this Committee's support since fiscal year 1998, the
CDC's State Heart Disease and Stroke Prevention Program covers 30
states, including the District of Columbia. But, only 8 states receive
funding for program implementation. The other 22 states receive funding
for program planning. This initiative allows states to design and/or
implement programs to meet specific needs to prevent heart disease,
stroke and other cardiovascular diseases. The CDC's 1997 report
Unrealized Prevention Opportunities: Reducing the Health and Economic
Burden of Chronic Disease states, ``strong chronic disease prevention
programs should be in place in every state to target leading causes of
death and disability . . . and their risk factors.'' Since
cardiovascular diseases remain the No. 1 killer in every state, each
state needs funding for basic implementation of a State Heart Disease
and Stroke Prevention Program. With fiscal year 2003 funding, the CDC
will add two states to the program and elevate, after a competitive
process, two states from planning to program implementation. An fiscal
year 2004 appropriation of $75 million for the State Heart Disease and
Stroke Prevention Program would allow the CDC to elevate up to an
additional 10 states from planning to program implementation and
continue to support the other currently funded states.
The Paul Coverdell National Acute Stroke Registry is designed to
track and improve delivery of care to stroke patients. The CDC is
developing and testing prototypes for this registry in 8 sites in
California, Georgia, Illinois, Massachusetts, Michigan, North Carolina,
Ohio and Oregon. An appropriation of $5 million would allow the CDC to
implement a statewide model registry and data-based intervention plans
among three state health departments to enable them to monitor and
improve stroke emergency transport response times, delivery of acute
care and use of treatments to prevent recurrent stroke.
Also, we recommend the following fiscal year 2004 funding levels
for the following CDC programs:
--$210 million for the Preventive Health and Health Services Block
Grant;
--$65 million for the Nutrition, Physical Activity and Obesity
Program;
--$83 million for the School Health Education Program; and
--$130 million for the Office of Smoking and Health to expand a
national program to curb tobacco use.
Coupled with a nationwide comprehensive State Heart Disease and
Stroke Prevention Program, these initiatives will help fight these
diseases. Please make heart disease and stroke prevention a top
priority.

HEALTH RESOURCES AND SERVICES ADMINISTRATION

About 250,000 Americans die each year from sudden cardiac arrest.
About 95 percent of the victims die before reaching a hospital. With
each minute the heart beat is not restored to its normal rhythm, the
victim's chance of survival drops about 10 percent. Within ten minutes,
death is almost certain. Small, easy-to-use devices, AEDs can shock a
heart back into normal rhythm and restore life. The Rural Access to
Emergency Devices Act, part of Public Law 106-505, and the Community
Access to Emergency Defibrillation Act, part of Public Law 107-188)
authorizes funds to local first responders, school districts and other
local government bodies to establish public access defibrillation
programs. Cities and towns nationwide eagerly await funds from these
important public health service grant awards, applying in droves for
resources made available last year. An fiscal year 2004 appropriation
of $42.5 million is required to support these authorized programs.

DEPARTMENT OF EDUCATION

Physical inactivity is a major risk factor for heart disease and
stroke. Unfortunately, our nation's youth have fewer opportunities for
physical education. Congress has appropriated significant funds for the
Carol M. White Physical Education for Progress Act over the last two
years. PEP provides critical funding for school-based physical
education programs, which teach life-long physical activity habits and
thereby prevents the onset of chronic disease, such as heart disease
and stroke. We advocate a fiscal year 2004 appropriation of $100
million for PEP.

ACTION NEEDED

Increasing funding for research, prevention and treatment programs
will allow continued strides in the battle against heart disease,
stroke and other cardiovascular diseases. Our government's response to
this challenge will help define the health and well being of Americans
for decades to come.

______

Prepared Statement of the Community Medical Centers Fresno, CA

Mr. Chairman and Members of the Subcommittee: My name is Dr. Philip
Hinton and I am the Chief Executive Officer of Community Medical
Centers in Fresno, California. Community Medical Centers is a not-for-
profit, locally owned healthcare corporation that is committed to
improving the health of the community. I am pleased to provide the
subcommittee with a request for assistance in securing federal monies
for a critical project in the Central San Joaquin Valley that would
improve access to healthcare to the residents of Fresno County.
These are challenging times for those providing healthcare across
the country. Recent events have highlighted the crisis that the
healthcare system in this country is facing:
Recently, the week of March 10, 2003 was designated as national
``Cover the Uninsured'' week, publicizing the plight of over 41 million
people across America lacking health insurance and resulting in the
introduction of several initiatives in Congress to address the
situation.
The recent introduction of S. 412, the Local Emergency Health
Services Reimbursement Act of 2003, recognizing the need for the
federal government to reimburse counties in southern and central
California for emergency health care to undocumented residents.
Recent news articles reporting that emergency departments in
hospitals across the country are overcrowded by uninsured and Medicaid
populations. In the last 10 years, there has been an average increase
in hospital emergency department visits by 33 percent while over 500
hospital emergency departments have closed. Due to a lack of health
insurance, many are forced to resort to treatment at hospital emergency
rooms rather than access primary care physicians.
It is clear that this crisis requires bold initiatives and
leadership.
Community Medical Centers, located in Fresno, took over the County
of Fresno's obligation for indigent healthcare in a 1996 landmark
agreement. Since that time, Community has been providing inpatient and
outpatient services to the residents of this community--regardless of
their ability to pay. The availability of healthcare to all in Fresno
County is a challenge at best. With a county boasting a population of
800,000, Fresno has some sobering statistics:
--An unemployment rate at 15 percent (almost three times the national
average)
--Over 25 percent of the residents in the county living below the
poverty line
--Over 30 percent of the residents in the county without health
insurance (almost double the national average)
--The third highest asthma mortality rate in the nation
--The highest rates of teen pregnancy in the state
--The highest incidence of diabetes among the Hispanic population
--Late or no prenatal care for pregnant women
--Some of the lowest immunization rates in the nation (62 percent at
age 2 versus 79 percent nationally)
These statistics point to the need to aggressively address the
healthcare needs for the county in a comprehensive manner and offer an
opportunity for Fresno County to serve as the perfect laboratory for
such an experiment. Community has developed the concept of a primary
healthcare network comprised of a local healthcare providers, Federally
Qualified Health Centers, county health and human services agencies,
schools and churches. A critical link to this network is the Community
Caremobile, a doctor's office on wheels that travels to communities
with no access to healthcare. The network will work to deliver both
preventive and primary healthcare to the residents of Fresno County.
Key to this network is a hub known as the Ambulatory Care Center to
be located on the campus of the Regional Medical Center in downtown
Fresno. We are requesting $17.5 million in funding for the Ambulatory
Care Center and have identified the following program for this $17.5
million request: the HHS Health, Resources and Services Administration
(HRSA) Buildings and Facilities earmark in the fiscal year 2004
appropriations bill for Labor/HHS/Education. Because this program is
specifically designated for buildings and facilities, we request your
assistance in securing as much of the $17.5 million as possible through
this program for the Ambulatory Care Center.
Although the challenges facing the healthcare community at the
national level are significant, these challenges are magnified in the
Central Valley beginning with the 30 percent of the residents of Fresno
County lacking any form of health insurance. The result is the need to
become creative and innovative in one's approach to providing health
care. The concept of creating a hub, the Ambulatory Care Center in
downtown Fresno, to be linked to a vast network of clinics and
healthcare providers throughout the county is the only possible way to
address the great need for accessible primary healthcare. By your
providing significant funding for the Ambulatory Care Center, we can
begin to address a severe crisis and improve the lives of many in
Fresno County.

______

Prepared Statement of the National Association of Children's Hospitals

The National Association of Children's Hospitals (N.A.C.H.) is
pleased to have the opportunity to submit the following statement for
the hearing record in support of the Children's Hospitals' Graduate
Medical Education (CHGME) Payment Program in the Health Resources and
Services Administration (HRSA).
On behalf of the nation's 60 independent children's teaching
hospitals, we thank the Subcommittee for the remarkable achievement
that Congress made last year in continuing to provide full, equitable
GME funding for these hospitals, giving them a level of federal support
for their teaching programs that is comparable to what all other
teaching hospitals receive through Medicare. We urge the Subcommittee
to continue to provide equitable funding for Children's Hospitals GME
in fiscal year 2004 so that these institutions will have the resources
to train and educate the nation's pediatric workforce.
N.A.C.H. is a not-for-profit trade association, representing more
than 120 children's hospitals across the country. Its members include
independent acute care children's hospitals, acute care children's
hospitals organized within larger medical centers, and independent
children's specialty and rehabilitation hospitals.
N.A.C.H. seeks to serve its member hospitals' ability to fulfill
their four-fold missions of clinical care, education, research, and
advocacy devoted to the health and well being of all of the children in
their communities. Children's hospitals are regional and national
centers of excellence for children with serious and complex conditions.
They are centers of biomedical and health services research for
children, and they serve as the major training centers for future
pediatric researchers, as well as a significant number of our
children's doctors. These institutions are major safety net providers,
serving a disproportionate share of children of low-income families,
and they are also advocates for the public health of all children.

BACKGROUND: THE NEED FOR CHILDREN'S HOSPITALS GME

While they account for less than 1 percent of all hospitals, the
independent children's hospitals train nearly 30 percent of all
pediatricians, half of all pediatric specialists, and a majority of
future pediatric researchers. They also provide required pediatric
rotations for many other residents. They train about 4,000 residents
annually, and the need for these programs is even more heightened by
the growing evidence of shortages of pediatric specialists around the
country.
Prior to initial funding of the CHGME program for fiscal year 2000,
these hospitals were facing enormous challenges to their ability to
maintain their training programs. The increasingly price competitive
medical marketplace was resulting in more and more payers not covering
the costs of care, including the costs associated with teaching.
The independent children's hospitals were essentially left out of
what had become the one major source of GME financing for other
teaching hospitals--Medicare--because they see few if any Medicare
patients. They received only \1/200\th (or less than 0.5 percent) of
the federal support that all other teaching hospitals received under
Medicare. This lack of GME financing, combined with the financial
challenges stemming from their other missions, was threatening their
teaching programs, as well as other important services.
In addition to their teaching missions, the independent children's
hospitals are a significant part of the health care safety net for low-
income children. On average, they devote nearly half of their patient
care to children who are assisted by Medicaid or are uninsured. More
than 40 percent of their care is for children assisted by Medicaid, and
Medicaid covers only about 84 percent of the cost of that care. Without
the Medicaid disproportionate share hospital (DSH) payments, Medicaid
would cover only about 76 percent of children's hospitals' patient care
costs. Further, these hospitals provide many important services from
dental care to child abuse programs that are either uncovered or very
underpaid.
The independent children's hospitals also are essential to the
provision of care for seriously and chronically ill children in this
country. They devote more than 75 percent of their care for children
with one or more chronic or congenital conditions. They provide more
than 40 percent to 75 percent of the inpatient care to children with
many serious illnesses--from children with cancer or cerebral palsy,
for example, to children needing heart surgery or organ transplants. In
some regions, they are the only source of pediatric specialty care. The
severity and complexity of illness and the services and resources that
these institutions must maintain to assure access to this quality care
for all children are also often inadequately reimbursed.
The CHGME program, and its relatively quick progress to full
funding in fiscal year 2002, came at a critical time. Between 1997 and
2000, independent children's hospitals on average experienced declining
operating margins and total margins. By fiscal year 2000 more than a
quarter of the hospitals were not able to cover their operating costs
with operating revenues, and nearly 20 percent were not able to cover
their total costs with total revenues. Thanks to the CHGME program,
these hospitals have been able to maintain and strengthen their
training programs.
Continuing this critical CHGME funding is more important for these
hospitals than ever in light of serious state budget shortfalls in
virtually every state in the country and the resulting pressures for
significant reductions in state Medicaid programs. Further, unless
Congress intervenes, cuts in the Medicaid DSH program that became law
on October 1, 2002, plus additional federal cuts called for in the
House-passed fiscal year 2004 Budget Resolution, will force states to
make even more substantial reductions in their Medicaid programs with
devastating results for children's hospitals and many other safety net
hospitals in many states.
The pediatric community, including the American Academy of
Pediatrics, Association of Medical School Pediatric Department Chairs,
and others, has recognized the critical importance of the GME programs
of the independent children's teaching hospitals, not only to the
future of the individual hospitals and their essential services but
also to the future of the nation's pediatric workforce and the
provision of children's health care and advancements in pediatric
medicine overall.
Lastly, many of the independent children's hospitals are a vital
part of the emergency and critical care services in their communities
and regions. They are part of the emergency response system that must
be in place for bioterrorism other public health emergencies. Expenses
associated with preparedness will add to their continuing costs in
meeting children's needs

CONGRESSIONAL RESPONSE

In the absence of any movement towards broader GME financing
reform, Congress in 1999 authorized the Children's Hospitals' GME
discretionary grant program to address the existing inequity in GME
financing for the independent children's hospitals and ensure that
these institutions could receive equitable federal support to sustain
their teaching programs. The legislation was reauthorized in 2000
through fiscal year 2005 and provided for $285 million through fiscal
year 2001 and such sums as may be necessary in the years beyond.\1\
Congress passed both the initial authorization (as part of the
``Healthcare Research and Quality Act of 1999'') and the
reauthorization (as part of the ``Children's Health Act of 2000'').
---------------------------------------------------------------------------
\1\ The Lewin Group, an independent health policy analysis firm
calculated in 1998 that independent children's teaching hospitals
should receive approximately $285 million in federal GME support for
nearly 60 institutions to achieve parity with the financial
compensation provided through Medicare for GME support to other
teaching hospitals.
---------------------------------------------------------------------------
With the support of this Subcommittee, Congress appropriated
initial funding for the program in fiscal year 2000, before the
enactment of its authorization. Following that enactment, Congress
moved substantially toward full funding for the program in fiscal year
2001 and completed that goal, providing $285 million in fiscal year
2002 and $292 million in fiscal year 2003. This represents an
extraordinary achievement for the future of children's health care as
well as for the nation's independent children's teaching hospitals.
The $285 million appropriated in fiscal year 2002 was distributed
at the end of the fiscal year through HRSA to 59 children's hospitals
according to a formula based on the number and type of full-time
equivalent (FTE) residents trained, in accordance with Medicare rules
as well as the complexity of care and intensity of teaching the
hospitals provide. Consistent with the authorizing legislation, HRSA
has begun to allocate the $292 million appropriation--minus an across-
the-board reduction of 0.65 percent million enacted as part of the
omnibus fiscal year 2003 appropriations bill--in bi-weekly periodic
payments to eligible independent children's hospitals.

FISCAL 2004 REQUEST

N.A.C.H. respectfully requests that the Subcommittee continue
equitable GME funding for the independent children's hospitals by
providing $305 million for the program in fiscal year 2004. This would
continue the fiscal year 2002 appropriation of $285 million--the
original full funding authorization level--and provide for an
adjustment for inflation by the consumer price index to recognize
higher wages and costs, building on the fiscal year 2003 appropriation
of $292 million. The authorization, which provides for such sums as may
be necessary in fiscal year 2002 and beyond, would allow for such an
adjustment, and it would be in keeping with the provision of such
adjustments in Medicare.
An fiscal year 2004 appropriation of $305 million for the federal
Children's Hospitals GME Payment Program enjoys board support in the
Senate. For example, on March 25, during debate on the Senate's fiscal
year 2004 Budget Resolution, the Senate passed by voice vote S. Amdt.
354 to S. Con. Res. 23, a Sense of the Senate Resolution by Senator
Michael DeWine that the Children's Hospitals GME should be funded at
$305 million.
Adequate, equitable funding for CHGME is an ongoing need.
Children's hospitals continue to train new pediatric residents and
researchers every year. Children's hospitals have appreciated very much
the congressional support they have received, including the attainment
of the program's authorization in fiscal year 2002 and continuation of
full funding with an inflation adjustment in fiscal year 2003. Now,
N.A.C.H. asks Congress to maintain this progress in fiscal year 2004.
Support for a strong investment in GME at independent children's
teaching hospitals is consistent with the repeated concern the
Subcommittee has expressed for the health and well being of our
nation's children--through education, health, and social welfare
programs. It also is consistent with the Subcommittee's repeated
emphasis on the importance of enhanced investment in the National
Institutes of Health (NIH) overall, and in NIH support for pediatric
research in particular, for which we are very grateful.
The CHGME funding has been essential to the ability of the
independent children's hospitals to sustain their GME programs. At the
same time, it has enabled them to do so without sacrificing support for
other critically important services that also rely on hospital subsidy,
such as many specialty and critical care services, child abuse
prevention and treatment services, poison control centers, services to
low-income children who have inadequate or no coverage, mental health
and dental services, and community advocacy, such as immunization and
motor vehicle safety campaigns.
In conclusion, the Children's Hospitals GME Payment Program is an
invaluable investment in children's health. The future of the pediatric
workforce and children's access to quality pediatric care, including
specialty and critical care services, could not be assured without it.
Again, N.A.C.H. thanks this Subcommittee and Congress for your
continuing leadership and support.
For further information, please contact Peters D. Willson, vice
president for public policy, N.A.C.H., at 703/797-6006 or
[email protected].

______

Prepared Statement of the American Society for Microbiology

The Centers for Disease Control and Prevention (CDC) is at the
frontline of public health with a mission to prevent disease, illness,
and injury. CDC works to ensure the well-being of Americans by
detecting disease, providing accurate and timely information used in
health decisions, and cooperating with partner groups likewise involved
in health promotion. The recent release of the Institute of Medicine
Report, ``Microbial Threats to Health: Emergence, Detection, and
Response,'' recognizes the ``need for a new level of attention,
dedication, and sustained resources to ensure the health and safety of
this nation--and of the world.'' The $6.5 billion proposed for the CDC
in fiscal year 2004 does not sufficiently address the complex health
risks that confront the agency from within this country and throughout
the world. Events just within the past month--possible bioterrorism
against U.S. combat troops overseas and the emergence of yet another
apparently new infectious threat--SARS (severe acute respiratory
syndrome)--urgently underscore the need for increased funding for the
CDC. The American Society for Microbiology (ASM) recommends that
Congress appropriate $7.9 billion for CDC in fiscal year 2004, which is
the recommendation of the CDC Coalition.

Fighting Infectious Diseases
The ASM is concerned about the adequacy of the proposed fiscal year
2004 funding of $332 million for CDC's infectious disease control
program, which is a decrease of $3 million from fiscal year 2003. This
level of funding is counter to the reality of infectious diseases,
which continue to be the third leading cause of death in the United
States and the cause of nearly one-third of deaths worldwide.
Persistent complications such as antimicrobial resistance, newly
identified pathogens like West Nile virus, newly emerging diseases such
as SARS, and global human migration certainly are not evidence in
support of decreased funding.
The CDC's complex and costly mission is to prevent the ravages of
infectious disease here and around the world, whether familiar threats
such as influenza or newly discovered, emerging diseases like SARS.
Here and abroad, CDC personnel conduct surveillance, investigate
epidemics, support both intramural and extramural laboratory research,
and provide training and public education programs to many millions.
During the past decade, more than 35 new infectious diseases were
identified; the current push to identify the source of SARS may add
another emerging disease to this deadly list. In response to the
initial overseas SARS cases, the CDC activated its Emergency Operations
Center to manage what is a complicated, international and
multijurisdictional disease outbreak. The CDC also conducts intensive
studies of other emerging diseases such as hantavirus; for instance,
last year it provided funding to four academic institutions to study
hantavirus transmission.
The CDC is expected to be at the forefront of any new infectious
disease outbreak, providing epidemiological expertise and state-of-the-
art laboratory assistance. The CDC recently established International
Emerging Infections Programs in Thailand and Kenya and developed seven
domestic and global sentinel surveillance networks to link health care
providers facing these newly emerging diseases. Much of the fieldwork
depends on the CDC's Epidemic Intelligence Service (EIS) Program. In
fiscal year 2002, EIS officers participated in Epi-Aids missions to
more than 70 outbreaks worldwide, at the request of local, state, and
foreign health officials.
Old enemies also endanger America's public health, in spite of
available prevention methods. In this country alone, an influenza
pandemic would cause an estimated 89,000 to 207,000 deaths, 314,000 to
734,000 hospitalizations, and economic losses between $71 billion and
$167 billion. Aware of this potential catastrophe, the CDC in the past
year expanded U.S. sentinel surveillance sites for influenza. ASM
recommends that an additional $10 million be allocated within the
infectious diseases budget in fiscal year 2004, to prepare for a
pandemic flu outbreak.
There have been great successes throughout years of immunization
programs, forcing vaccine-preventable diseases to or near historically
low incidences in the United States. Measles, for example, is no longer
endemic and the CDC estimates that measles immunization saves this
country both thousands of lives and $7 billion each year. Only two
cases of rubella were reported to CDC in 2001, compared to 1,401 cases
a decade ago. However, weaknesses persist in our immunization barricade
against preventable infectious diseases. Nearly one million two-year-
old Americans have not received one or more of the available
recommended childhood vaccines. Vaccine-preventable diseases in adults
is an even greater challenge: as many as 50,000 adults die each year of
hepatitis B, influenza, and pneumococcal infections. The annual cost of
these diseases exceeds $10 billion.
The fiscal year 2004 budget request includes more than $1.2 billion
to continue CDC campaigns against HIV/AIDS, sexually transmitted
diseases (STDs) and tuberculosis. This is more than $46 million above
the President's fiscal year 2003 budget for these ongoing programs.
Approximately 900,000 Americans are HIV-infected; unfortunately, the
number of new HIV infections reported each year has been about 40,000
for the past decade, without showing any decline. STDs caused by
chlamydia are the most commonly reported infectious disease in the
United States (more than 700,000 cases in 2001). Non-HIV STDs cost the
U.S. economy at least $10 billion in direct and indirect costs each
year, due to an annual estimated 15 million new cases.
Prevention of disease is the CDC's primary mission--the ASM urges
Congress to provide an additional $93 million in fiscal year 2004 to
enable CDC to complete its strategic plan for the 21st century,
``Preventing Emerging Infectious Diseases.''

Global Infectious Disease
Disease outbreaks anywhere in the world put U.S. citizens at risk;
American health has become intertwined with global health. In 2002, the
CDC announced its Global Infectious Disease Strategy, to create
effective collaborations with international partners against the
emergence and spread of infectious diseases. International efforts can
make impressive progress: the number of polio-endemic countries dropped
from 125 in 1988 to only eight today. But if ignored, infectious
disease anywhere could spread into disaster, as have periodic influenza
outbreaks and HIV infection. The current SARS outbreak of just a few
reported cases in China in November has increased to more than 1,600
worldwide, today. The suspected number of cases in the United States
has grown to fifty-nine, across twenty-two states. CDC recognizes that
protecting the well-being of Americans is now impossible without
supporting global strategies. The Administration recognized this as
well, in its recently announced International Mother and Child HIV
Prevention Initiative, to be administered in part by the CDC and meant
to reduce HIV transmission from infected mother to child by 40 percent.
At the end of 2001, 2.7 million children younger than 15 were living
with HIV/AIDS worldwide, nearly all of them infected by their mothers.
The ASM recommends that Congress allocate $9 million over the
appropriated fiscal year 2003 level, for global infectious disease
activities.

Antimicrobial Resistance
Antimicrobial resistance among pathogenic microorganisms is a
frightening trend found in a widening range of disease agents. The
pathogenic agents of tuberculosis, malaria and gonorrhea are among
those that have developed mechanisms to disarm their standard drug
treatments. A recent study at Harvard concluded that by the summer of
2004, as many as 40 percent of the strains of Streptococcus pneumoniae
could be resistant to both penicillin and erythromycin. This
streptococcus causes thousands of cases of ear infections, pneumonia,
meningitis, and sinusitis every year. The CDC estimates that as many as
100,000 are hospitalized each year with methicillin-resistant
Staphylococcus aureus infections, bacteria capable of causing many
different illnesses including bloodstream and skin infections. In
addition, antimicrobial-resistant tuberculosis bacteria, which have
evolved new strains immune to drugs typically used to treat the
disease, has also emerged. Government agencies joined the CDC in 2001
to address this trend under the Public Health Action Plan to Combat
Antimicrobial Resistance. This past year, the CDC initiated a research
grant program focused on antimicrobials in the environment and in rural
areas and on ways in which resistant genes spread among pathogens. In
recent weeks the agency launched a topic-specific education campaign
for physicians, on using antimicrobials wisely and preventing the
spread of resistant pathogens. The ASM recommends that an increase of
$13 million be appropriated for antimicrobial resistance programs and
activities implemented by the CDC.

Ensuring National Security and Public Health
As events in late 2001 sadly demonstrated, this nation and its
citizens abroad are at high risk from possible terrorist attacks,
including the intentional release of pathogenic microorganisms. The CDC
responded immediately and aggressively to those events with personnel,
information, and financial support. CDC requires adequate resources to
optimally prepared to meet such tragedy, to join with state, local, and
international agencies in a well-coordinated defense.
The proposed fiscal year 2004 budget for CDC includes $1.1 billion
for the agency's multi-faceted Bioterrorism Preparedness and Response
Program, equal to the fiscal year 2003 bioterrorism-related request.
Within this sum are $940 million to improve state and local
preparedness, $158 million to improve CDC's internal preparedness, and
$18 million to continue anthrax research. This steady-state sum total
reflects the creation of the new Department of Homeland Security and
subsequent shift from CDC to the new department of the smallpox vaccine
program and the Strategic National Stockpile (SNS) designed to
warehouse counterterrorism vaccines and pharmaceuticals. Despite these
two recent program shifts, the CDC responsibility for homeland security
remains immense. The ASM supports the Administration's request of $940
million for state and local capacity. We also support and strongly
encourage CDC efforts to quickly assess the cost of the smallpox
immunization program, including an evaluation of the impact of the
program on human resources and the redirection of resources from other
state and local public health activities and broader bioterrorism
preparedness, as recommended in a March 27 report by the Institute of
Medicine's Committee on Smallpox Vaccination Program Implementation.
The IOM recommendation was based on state and local health department
concerns that resources are being diverted from other public health
services to respond to smallpox preparedness and that cost issues
constitute a difficulty in program implementation. The assessment
should also focus on the human resources needed, training issues and
the allocation of resources to state and local health departments.
Understanding and responding to the cost implications is critical for
the safe and effective implementation of the program and for funding of
ongoing public health services and broader bioterrorism preparedness.
Following the attacks of September 11, 2001, and the intentional
release of anthrax shortly thereafter, the CDC refocused its priorities
to be ready against all types of terrorism, whether chemical,
biological, radiological or conventional. In partnership with the
Agency for Toxic Substances and Disease Registry (ATSDR), the CDC
reinforced its capability to respond rapidly, having learned along with
the nation that the public health system is central to any conflict
with terrorism. The ongoing, integrated effort includes improving state
and local laboratory capacity to detect possible biological and
chemical agents, as well as upgrading surveillance and reporting
systems nationwide.
Over the past year the CDC established a national Emergency
Communication System, to quickly and accurately include all groups
involved in defending public health. This system already has been
utilized during the West Nile virus outbreak, the initial distribution
of smallpox vaccine, and recently, to track the SARS outbreak. At the
same time, the agency trained more than 1.5 million health
professionals in terrorism-specific areas through its online Public
Health Training Network. In 2002 the CDC released its National Public
Health Performance Standards for state and local systems, part of its
strategy to strengthen public health practice as called for by the 2002
Bioterrorism Act. This January, the CDC began distributing to state and
local governments shipments of smallpox vaccine, which had been
deposited by the agency at the centralized national vaccine stockpile.
The CDC and ATSDR recently joined with the FBI in a renewed
investigation of the 2001 anthrax contamination in Florida. CDC
scientists have examined reputed anthrax-containing parcels/letters
submitted by many state health departments.
What is learned about the epidemiology of infectious diseases in
general also applies to potential weapons of bioterrorism, making all
aspects of CDC infectious disease activities important to homeland
security. Biological agents can be difficult to identify in advance of
and even during an attack, and infectious disease can spread quickly
through a population. The CDC is able to respond within minutes of
receiving infectious outbreak reports, but strives to improve its own
and others' counterterrorism capabilities. To upgrade its own
responses, the CDC is revamping the Rapid Response and Advanced
Technology (RRAT) laboratory at the agency's National Center for
Infectious Diseases (NCID). NCID also is distributing millions of
dollars to non-CDC investigators for basic research in biodefense and
emerging infectious diseases, with emphasis on the A list of potential
biological agents--those causing anthrax, botulism, plague, smallpox,
tularemia, and viral hemorrhagic fevers, all easily disseminated and
capable of high mortality rates. Through the government's Select Agent
Program, the CDC and the Department of Agriculture register facilities
that use these and other agents for legitimate purposes.

Reinforcing CDC Infrastructure
The total funding for CDC buildings and facilities in the fiscal
year 2004 proposed budget is $114 million, which is $70 million less
than the President's fiscal year 2003 request. CDC's priority items are
security upgrades and construction of a new building for agency
headquarters and the Emergency Operations Center. The CDC utilized last
year's funding to open two new research laboratories, to investigate
toxic chemicals in the environment and parasitic diseases,
respectively. But the physical component of the CDC remains greatly
inadequate, out-of-date and scattered. Some of CDC's laboratories
continue to have leaking roofs, rotted floors, and cramped conditions.
Newly emerging diseases and today's greater risk of terrorism can
overload an already strained communications system. The CDC tracks more
than 60 notifiable infectious diseases in the United States, while
watching worldwide for new and old diseases. Within the proposed fiscal
year 2004 budget, CDC priorities include building a Public Health
Information Network that goes beyond the many existing CDC surveillance
systems. It will guarantee secure and accurate information-sharing in
emergency and non-emergency situations. Last year the agency improved
public access to its Internet information, increasing the average
monthly visits to 3.6 million. It educated on-line thousands of health
care providers about emerging critical issues such as smallpox and
anthrax vaccines. The ASM recommends that Congress appropriate $250
million for the critical infrastructure needs at CDC.

______

Prepared Statement of the National Treasury Employees Union

Chairman Specter, Members of the Subcommittee: My name is Colleen
M. Kelley and I am the National President of the National Treasury
Employees Union (NTEU). NTEU represents more than 150,000 federal
employees across 28 agencies and departments of the federal government,
including employees in a number of agencies within the Department of
Health and Human Services.
NTEU is proud to represent employees in the Health Resources and
Services Administration (HRSA), Substance Abuse and Mental Health
Services Administration (SAMHSA), Administration for Children and
Families (ACF), Administration on Aging (AoA), Office of the Secretary
(OS), Office for Civil Rights (OCR), Program Support Center (PSC) and
the National Center for Health Statistics (NCHS). NTEU also represents
employees in the Social Security Administration's Office of Hearings
and Appeals.
As you know, Mr. Chairman, for entirely too long now, most federal
agencies and departments have been strapped for adequate funding. When
federal agencies are denied the resources they need, services the
American people expect and deserve are effectively denied. Front line
federal employees feel this lack of resources directly and are
frustrated by the continuing necessity of doing more with less.
The human capital crisis the federal government faces will only
begin to turn around when we take the appropriate steps to treat our
employees like assets to be valued instead of costs to be cut. Adequate
and stable agency funding coupled with appropriate federal pay and
benefits are the keys to ensuring that the government is able to
attract and retain the federal employees it needs.
The need for the federal government to hire and maintain a highly
trained and skilled workforce has never been more clear. Federal
employees protect our Nation's medical supplies, they help secure our
borders and they provide valuable information to their fellow citizens
every day. They deserve to have the agencies they work for properly
funded.
Unfortunately, this is often not the case. Agencies are frequently
unable to provide appropriate training to their employees or even hire
the necessary number of employees to accomplish their missions because
of budgetary restrictions. The fiscal year 2004 budget request for
agencies within the Department of Health and Human Services and the
Social Security Administration is no different.
The Administration's fiscal year 2004 request for program
management funding at the Health Resources and Services Administration
(HRSA) is $157 million. Although this figure represents a $3 million
increase in administrative funds over the fiscal year 2003 funding
level, it is important to remember that HRSA's 2003 funding level
represented a reduction of $2 million from the prior year. For an
agency charged with insuring access to quality health care, especially
to underserved populations--services that are in desperate need of
expansion--a considerably larger increase in program management funding
is called for. HRSA cannot effectively accomplish its mission without
additional resources.
The President proposes a $1 million reduction in funding for the
National Center for Health Statistics (NCHS) for fiscal year 2004,
dropping the agency from its $126 million funding level in 2003 to $125
million. If this funding level were enacted, it would be the second
year in a row that funding for the NCHS has been reduced. As you know,
the work NCHS undertakes is critical to ensuring that national health
care initiatives are effective and the agency deserves a more
appropriate funding level.
The budget request for program management funds at the Substance
Abuse and Mental Health Services Administration (SAMHSA) is $85
million, an increase of $8 million over the fiscal year 2003 funding
level for this agency. SAMHSA is the federal agency charged with
improving the quality and availability of treatment and intervention
programs for those suffering from substance abuse and mental illness.
NTEU is pleased to see this request, especially in light of the
reduction in funding this agency suffered between fiscal year 2002 and
2003 when more than $14 million in program management funds were
stripped from SAMHSA's budget. However, we are troubled by the proposal
the President has made to reduce full time equivalent employment at the
agency and contract out some current SAMHSA functions. NTEU strongly
objects to this proposal and urges the Subcommittee to review this
request carefully.
After static funding levels the past two years, the President's
budget proposal for fiscal year 2004 for the Administration for
Children and Families (ACF), represents an increase of $8 million for
federal administration of the programs ACF oversees. Funding
restrictions in past years have hampered this agency's ability to
accomplish its missions and NTEU strongly supports increased funding
for the federal administration of ACF programs.
However, at the same time, we must register our strong opposition
to the budget's recommendation that the Head Start Program,
administered extremely successfully by ACF for many years, be moved
from the Department of Health and Human Services to the Department of
Education. As the Chairman knows, Head Start is much more than a stand
alone education program; it provides a comprehensive range of effective
social services to low income families and at risk children. Proposals
to transfer oversight of this premiere program risk destroying what
most experts agree is one of the finest programs the federal government
has ever operated. The founding principles of the program are as valid
today as they were when the program was implemented almost 40 years
ago.
Instead of proposing to move Head Start from the Department of
Health and Human Services to Education, Congress should be focusing on
providing the necessary resources to ensure that Head Start can serve
more needy children and their families and be even more successful in
the future. In NTEU's view, moving Head Start from HHS to Education is
effectively a move to dismantle the program. While reading skills are
an essential component of Head Start, they are by no means the only
component. A child without enough to eat, a child suffering from abuse
or depression or a child with difficulties in hearing or seeing is not
a child likely to read well absent intervention. The program was placed
under the Department of Health and Human Services in the first place
because that agency was best equipped to help resolve the range of
issues that may impact a child eligible for the Head Start program.
That is no less true today.
Congress considered and soundly rejected a proposal to move Head
Start out of the Department of Health and Human Services and into the
Education Department during the Carter Administration. The principles
Congress adhered to at that time are equally true today and NTEU urges
this Subcommittee's strong opposition to the proposal to move Head
Start to the Department of Education.
The President's budget recommends no new funding for program
administration for the Administration on Aging (AoA), instead opting to
keep the agency's program administration funding level at $18 million
for another year. With our country's rapidly growing older population,
this is particularly troublesome. The AoA helps older Americans remain
independent and productive and offers nutrition, caregiver support and
preventive health programs. These are precisely the type of programs
desperately in need of expansion, yet the fiscal year 2004 budget
proposal, like the 2003 budget before it offer no new funding for these
critical areas. The AoA funding level, too, requires the careful
scrutiny of this Subcommittee.
The Office of the Secretary (OS) of the Department of Health and
Human Services is also slated to receive no new funding in fiscal year
2004. Federal employees working in the Office of the Secretary help
administer all of the programs operated by the Department of Health and
Human Services. It is critical that this office be effectively funded
and NTEU urges a significant funding increase for this division.
The President's budget recommends a small increase in program
funding for the Office for Civil Rights (OCR). The recommendation would
increase this agency's resources from their 2003 funding level of $33
million to $34 million in 2004. The HHS Office for Civil Rights helps
to ensure that individuals have proper access to all the services and
programs the Department offers. Moreover, this agency helps promote the
privacy of medical information. In past years, OCR has been woefully
underfunded and NTEU urges this body to carefully review their funding
needs for 2004.
The Department of Health and Human Services' Program Support Center
(PSC) offers a range of administrative services both to HHS agencies
and other federal departments. The President's budget, which requests a
$10 million increase in expenses for this key agency over their fiscal
year 2003 funding level, deserves to be adopted by this body.
NTEU also represents employees in the Office of Hearing and Appeals
(OHA) of the Social Security Administration. As the Chairman knows very
well, OHA's mission is to assist those claimants who have been found
ineligible for Social Security disability benefits by providing an
impartial review and hearing on their cases. The growing backlog of
cases before OHA prevents a fair and timely hearing for these
individuals. One of the problems facing OHA is that it lacks sufficient
decision makers to handle its rapidly growing workload.
For almost a decade, SSA's disability program has been in crisis.
In 1995, SSA introduced a program called the Senior Attorney Program
that was instrumental in reducing the backlog and improving processing
times. In every respect, the Senior Attorney Program was a success. The
agency's experienced staff attorneys were given the authority to decide
and issue fully favorable decisions--without the time and expense of a
full hearing--in those cases where the evidence clearly identified an
individual as disabled. It materially improved both the quality and
timeliness of service to the public. The OHA backlog fell from over
550,000 pending cases to a low of 311,000 at the end of fiscal year
1999.
Unfortunately, SSA chose to terminate this innovative program as it
undertook its Hearings Process Improvement (HPI) plan, a plan SSA now
admits was unsuccessful. The Senior Attorney Program benefited more
than just those claimants who received their disability benefits sooner
than would have otherwise been the case. Administrative Law Judge time
was more wisely spent on cases that required a hearing, thereby
reducing processing times for those cases as well.
NTEU urges the Committee to closely review the original Senior
Attorney Program. Not only was it a huge success, it materially
improved the quality of service to the public and resulted in
administrative and program cost savings. With the inevitable increase
in disability applications that is expected to occur as our population
ages, the time to address the situation is now. The Senior Attorney
Program worked. It did not consume additional resources, not did it
require the hiring of new Administrative Law Judges. The Senior
Attorney Program provides an answer with proven results and its
termination was shortsighted. I hope this Subcommittee will carefully
consider this as a potential solution to the growing backlogs facing
the OHA.
Although the President's fiscal year 2004 budget for OHA would
provide some additional funds to the agency, it appears to be little
more than a down payment. The agency will continue to be unable to
improve processing times for disability cases until it is provided with
the appropriate resources for its mission. NTEU strongly urges both
additional funding--and additional decision makers--for the Office of
Hearings and Appeals.
Mr. Chairman, thank you very much for the opportunity to comment on
the fiscal year 2004 budget proposal for agencies within the
jurisdiction of your Subcommittee.

______

NATIONAL INSTITUTES OF HEALTH

Prepared Statement of the National MPS Society, Inc.

Mr. Chairman and members of the Subcommittee: My name is Les
Sheaffer, I serve on the Board of Directors of the National MPS Society
and as Chairman of the Committee on Federal Legislation. My 10 year old
daughter Brittany suffers from MPS III. I am submitting this testimony
for the purposes of expressing the views of the National MPS Society
with respect to congressional appropriations for the National
Institutes of Health in 2004 and biomedical research priorities and
issues of importance to the MPS, ML and rare disease community.
I wish to offer my thanks to Chairman Specter and the members of
the LHHS Subcommittee for their continuing support for enhanced
investment in genetic and biomedical research, training and
infrastructure at the National Institutes of Health.
There are 11 primary types of Mucopolysaccharidosis (MPS) and
Mucolipidoses (ML) are genetic Lysosomal Storage Disorders caused by
the body's inability to produce certain enzymes. Normally, the body
uses these enzymes to break down and recycle dead cells. In affected
individuals, the missing or insufficient enzyme prevents the normal
breakdown and recycling of cells resulting in the storage of these
deposits in virtually every cell of the body. As a result of the
storage, cells do not perform properly and cause progressive damage
throughout the body including the heart, bones, joints, respiratory
system and central nervous system. While the disease may not be
apparent at birth, signs and symptoms develop with age as more cells
are damaged by the accumulation of deposits. The most unfortunate
result of these disorders is childhood mortality in many cases.
MPS research has gained momentum in recent years, private sector
investment, funding of research by non profit organizations, improved
technology, increasing collaboration and the essential federal
investment in valuable MPS and ML related research on the part of the
National Institutes of Health have all contributed to a better
understanding of these disorders. The recent (January 2003)
recommendation by a FDA advisory committee to approve the enzyme
replacement therapy product ``Aldurazyme'' is a testament to the
continued progress in development of MPS and Lysosomal Storage Disorder
(LSD) therapeutics and promise for future advancement.
The average MPS researcher obtains approximately 80 percent of the
funding they utilize for MPS and ML research projects from the National
Institutes of Health. These statistics are based upon the results of a
poll of the Scientific Advisory Board of the National MPS Society in
2000. Clearly, strong federal funding of MPS related research is
essential to ensure investigators have resources needed to perform
critical research pursuing development of effective therapies for MPS
and ML disorders.
The primary institutes supporting MPS related research include the
National Institute of Diabetes Digestive and Kidney Diseases (NIDDK),
National Institute of Neurological Disorders and Stroke (NINDS),
National Heart Lung Blood Institute (NHLBI) and National Institute of
Child Health and Human Development (NICHD), additionally resources for
development and maintenance of LSD animal models is supported by the
National Center for Research Resources (NCRR) and the Office of Rare
Diseases (ORD) plays an important role in facilitating communication
and coordination.
In September of 2002 the NINDS sponsored a scientific conference
titled ``Mucopolysaccharidosis--Therapeutic Avenues in the Central
Nervous System'' supported by NIDDK, NICHD and ORD. Bringing key
investigators in the current MPS research community together with
outside professionals in relevant fields of study contributed to
greater interest in MPS related research and collaborative discussion
on the critical issue of how we may treat the brain in MPS disorders.
We look forward to the growth and enhancement of NIH efforts to
employ all available and appropriate mechanisms to support research
that contributes to the development of therapeutic approaches for the
CNS in Lysosomal Storage Disorders like MPS, ML and other deadly
diseases that rob the quality of life and future of thousands of
children every year. The progression of neurological damage in MPS
disorders is profound and has yet to effectively treated or managed in
any MPS or ML disorder.
As you know Requests for Applications (RFA) are a valuable tool for
stimulating research in a targeted area. For example we are hopeful the
now expired RFA soliciting proposals for Gene Therapy for Neurological
Disorders (NS-02-007) will provide knowledge so valuable to better
understanding how we may one day treat these multi systemic disorders.
RFA's issued in 2003 supporting Rare Diseases Clinical Research (RR-03-
008) and Drug Screening in Animal Models (NS-03-003) are promising and
represent an enhancement to efforts to better serve the rare disease
research community.
In this context we wish to express in the strongest possible way
our support for the employment of a targeted funding mechanism with a
focus on addressing Central Nervous System (CNS) issues. This intuitive
with appropriate focus, particularly on the Blood Brain Barrier (BBB)
as an impediment to treating Lysosomal Storage Disorders will in our
view will present a meaningful contribution to filling the gaps in
important current research and embark on the path that will lead to
development of effective therapies for MPS and many other disorders.
In light of these facts it is clear that investment allowing the
NIH to fulfill its mission to support intramural and extramural
research is essential to ensuring current MPS and ML related research
is supported and resources are available to take advantage of the
promising research we expect to see continue to develop.
I have reviewed the Presidents proposed budget for the NIH for
fiscal year 2004 and respectfully disagree with the approximate 2
percent increase in the NIH budget for fiscal year 2004. The Board of
Directors and the membership of the National MPS Society I wish to
express our support for a minimum increase in the budget of the
National Institutes of Health budget of approximately 8 percent for
fiscal year 2004. This funding level will ensure that current
commitments are fully met and provide resources necessary to ensure the
growth and enhancement of federally supported quality biomedical
research, valuable research that will continue to solidify the position
of the United States as the world leader in health research.
The Board of Directors and members of the National MPS Society
fully recognize the many challenges we face as a nation with respect to
maintaining of security and homeland defense as well as the significant
demands placed on public resources required to support or military
efforts to secure our national security and global interests. Like all
Americans we have an interest in providing the resources needed to
ensure our way of life.
The unique perspective provided in caring for a child with a
serious and most often fatal disease grants a clear vision of multiple
aspects of protecting our children, some are quite tangible including
effective and affordable health care and related services for our
children. When considering research, we steadfastly maintain the
belief, founded in fact, that strong funding of the NIH remains
essential to ensure the continued advancement of basic research science
and understanding of thousands of diseases affecting society, diseases
that like MPS and ML rob the quality of life, financial stability and
ultimately the lives of millions of American children and adults.
In closing I wish to again thank the members of the Labor Health
and Human Services Subcommittee for your continued dedication to
medical research and the completion of the Congressional commitment to
double the budget of the National Institutes of Health in 2003.
Please carefully consider the information presented here, it is our
sincere hope that future budget and appropriations decisions continue
to reflect the advancement of and investment in medical research as the
highest possible priority for years to come. Our children and those of
future generations deserve nothing less.

______

Prepared Statement of the American Thoracic Society

SUMMARY OF FUNDING RECOMMENDATIONS

[In millions of dollars]

National Institutes of Health................................. 30,000.00
National Heart, Lung, and Blood Institute................. 3,287.57
National Institute of Allergy and Infectious Disease...... 3,237.96
National Institute of Environmental Health Sciences....... 727.32
Fogarty International Center.............................. 72.93
National Institute of Nursing Research.................... 153.67
Centers for Disease Control and Prevention.................... 7,900.00
National Institute for Occupational Safety and Health..... 307.00
Office on Smoking and Health.............................. 130.00
Environmental Health: Asthma Activities................... 70.00
Tuberculosis Control Programs............................. 528.00

The American Thoracic Society (ATS) is pleased to present its
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 which focuses on
respiratory and critical care medicine. The Society's members 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 disorders and
life-threatening acute illnesses.

MAGNITUDE OF LUNG DISEASE

Each year, an estimated 344,500 Americans die of lung disease. Lung
disease is America's number three killer, responsible for one in every
seven deaths. More than 30 million Americans suffer from a chronic lung
disease. In 2002, lung diseases cost the U.S. economy an estimated
$144.9 billion in direct and indirect costs.
Lung diseases represent a spectrum of chronic and acute conditions
that interfere with the lung's ability to extract oxygen from the
atmosphere, protect against environmental or biological challenges and
regulate a number of metabolic processes. Lung diseases include:
chronic obstructive pulmonary diseases, lung cancer, tuberculosis,
pneumonia, influenza, sleep disordered breathing, pediatric lung
disorders, occupational lung disease, sarcoidosis and asthma.
The ATS is pleased that the Administration and Congress fulfilled
its commitment to double the National Institute of Health (NIH) budget
in fiscal year 2003. However, we are extremely concerned with the
President's fiscal year 2004 budget that proposes a mere 2 percent
increase for NIH. We thank the Senate for approving a 10 percent
increase for NIH and hope that the final appropriations numbers will
reflect the Senate number. In order to stem the devastating effects of
lung disease, research funding must continue to grow to continue with
the medical breakthroughs made over the past five years. While our
statement will focus on selected parts of the Public Health Service,
the American Thoracic Society is firmly committed to appropriate
funding for all sectors of our nation's public health infrastructure.

COPD

Chronic Obstructive Pulmonary Disease, or COPD, is a growing health
problem. Yet, it remains relatively unknown to most Americans and much
of the research community. COPD is an umbrella term used to describe
the airflow obstruction associated mainly with emphysema and chronic
bronchitis. COPD is the fourth leading cause of death and disability in
the United States and the third leading cause of death worldwide.
While the exact prevalence of COPD is not well defined, it affects
tens of millions of Americans and can be an extremely debilitating
condition. It has been estimated that 10 million patients have been
diagnosed with some form of COPD and as many as 24 million more are
undiagnosed.
In 2001, 13.3 million adults in the United States were estimated to
have COPD. In addition, according to the new government data based on a
2001 prevalence survey, three million Americans have been diagnosed
with emphysema and 11.2 million are diagnosed with chronic bronchitis.
In 2000, 122,009 people in the United States died of COPD, with the
death rate for women with COPD surpassing the death rate of men with
COPD. COPD costs the U.S. economy an estimated $30.4 billion a year.
Medical treatments exist to address symptom relief and slow the
progression of the disease. Today, COPD is treatable but not curable.
Fortunately, promising research is on the horizon for COPD patients.
Research in the genetic susceptibility underlying COPD is making
progress. Also, there are promising research leads on medications that
might be able to repair damage to lung tissue caused by COPD.
Additional research is needed to pursue these leads.
Despite these promising research leads, the ATS feel that research
resources committed to COPD are not commensurate with the impact COPD
has on the United States and the world. The best approach to stem the
growth of COPD is through prevention, education and more public
awareness. The ATS strongly recommend that the NIH and other federal
research programs commit additional resources to COPD research and
educational programs.

ASTHMA

Asthma is a chronic lung disease in which the bronchial tubes of
the lungs become swollen and narrowed, preventing air from getting into
or out of the lung. A broad range of environmental triggers that vary
from one asthma-sufferer to another causes these obstructive spasms of
the bronchi.
Asthma is on the rise and is a serious public health concern. The
following statistics tell of how devastating asthma is to our nation.
It is estimated that 12 million people suffer from asthma, including
over 4 million children. Rates are increasing for all ethnic groups and
especially for African American and Hispanic children. While some
children appear to out grow their asthma when they reach adulthood, 75
percent will require life-long treatment and monitoring of their
condition.
Asthma is expensive. The growth in the prevalence of asthma will
have a significant impact on our nation's health expenditures,
especially Medicaid. The direct medical costs and indirect costs for
asthma are estimated to exceed $14 billion annually. In fact, the value
of reduced productivity due to loss of school days represented the
largest single indirect cost at $1.4 billion and asthma represents the
most common cause of school absenteeism due to chronic disease. In
2000, there were 9.3 million physician office visits, and 1.8 million
emergency room visits due to asthma.
Asthma also kills. In 2000, 4,487 people in the United States died
as a result of an asthma attack. Approximately, 65 percent of these
deaths occurred in women. A disproportionate share of these deaths
occurred in African American families.

Addressing the Growing Asthma Epidemic
As the prevalence of asthma has grown, so has asthma research.
Researchers are developing better ways to treat and manage chronic
asthma. Research supported by National Heart, Lung and Blood Institute
(NHLBI) has discovered genetic components as well as how infectious
disease contributes to asthma.
Basic research is also learning more about asthma. Researchers
supported by NHLBI have developed better animal models to allow
expression of selected asthmatic genetic traits. This will allow
researchers to develop a greater understanding of how genes and
environmental triggers influence asthma's onset, severity and long-term
consequences.
The ATS also feels that Centers for Disease Control and Prevention
(CDC) must play a leadership role in the ways to assist those with
asthma. Currently, there are national statistical estimates that
document that asthma is a growing problem in the United States.
However, we do not have accurate data that provide regional and local
information on the prevalence of asthma. 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.
Last year, Congress provided approximately $35 million for the CDC
to conduct asthma programs. CDC will use these funds to conduct asthma
outreach, education and tracking activities. The ATS recommends that
CDC be provided $70 million in fiscal year 2004 to expand programs and
establish grants to community organizations for screening, treatment,
education and prevention of childhood asthma.
In the past, Congress enacted legislation that directs the National
Asthma Education and Prevention Program at NHBLI to develop a plan for
the federal government to respond to the growing asthma epidemic in the
United States. This plan should bring together key public and private
organizations to develop a national asthma plan to coordinate the many
elements of an effective public health response to asthma. Components
of a national plan should include research, surveillance, patient and
provider education, community awareness, indoor and outdoor air
quality, and access to health care providers and medication.

TUBERCULOSIS

Mr. Chairman, the first lung disease research began with the
treatment of those who had tuberculosis or consumption, as it was
called at the turn of the 20th century. Tuberculosis (TB) is an
airborne infection caused by a bacterium, Mycobacterium tuberculosis.
TB primarily affects the lungs but can also affect other parts of the
body, such as the brain, kidneys or spine.
TB is spread through coughs, sneezes, and close proximity to
someone with active tuberculosis. People with active tuberculosis are
most likely to spread TB to others they spend a lot of time with, such
as family members or coworkers. It cannot be spread by touch or sharing
utensils used by an infected person.
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 2002, there were 15,678 cases
of active TB reported in the United States.
The Institute of Medicine (IOM) recently published a report,
entitled: ``Ending Neglect: The Elimination of Tuberculosis in the
United States.'' The report documents the cycles of attention and
progress toward TB elimination, the periods of insufficient funding and
the re-emergence of TB. The IOM report provides the United States with
a road map of recommendations on how to eliminate TB in the United
States. The IOM report identifies needed detection, treatment,
prevention and research activities. The ATS have endorsed the IOM
report and its recommendations.
The ATS is pleased to note that, for the time being, TB rates in
the United States are declining. From a high in 1992 of 26,673 new
cases, we have seen 10 straight years of decline. To help maintain
control and accelerate the decline of TB in the United States, engage
in the global effort to control tuberculosis, and develop new tools for
the diagnosis, treatment and prevention of TB, the ATS recommends $528
million for the CDC to fund TB research in fiscal year 2004.
While declining overall TB rates is good news, the emergence and
spread of multi-drug resistant TB poses 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.
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. The National Institutes of Allergy and Infectious Disease have
developed a Blueprint for Tuberculosis Vaccine Development. ATS
encourages the subcommittee to fully fund the TB vaccine effort.

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. The goal is to
develop a cadre of health professionals in the developing world who can
begin controlling the global AIDS epidemic.
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. This supplemental program has been highly successful in
beginning to create the human infrastructure to treat the nearly two
billion people who have TB worldwide.
However, we believe TB training grants should not be offered
exclusively to institutions that have received AIDS training grants.
The TB grants program should be expanded and open to competition from
all institutions. The ATS recommends Congress provide an additional $3
million for FIC to expand the TB training grant program from a
supplemental grant to an open competition grant.

NIOSH--Researching and Preventing Occupational Lung Disease
The ATS is extremely concerned that the president's budget proposes
to cut the National Institute of Occupational Safety and Health (NIOSH)
extramural research program. The ATS strongly encourage this
subcommittee to reject the Administration's proposed cut to the NIOSH
research program. Occupational safety and health research are valuable
and deserve additional funding.
Protecting the health of our nation's workforce will require
research, training, tracking and new technologies. The ATS recommend
that the subcommittee provide a $60 million increase for the NIOSH
budget including $20 million for the NIOSH National Occupational
Research Agenda (NORA). NORA represents a partnership research plan for
occupational disease. The NORA agenda was developed with input from
labor, business and the health community.
The ATS recommend an additional $20 million for NIOSH Emergency
Preparedness agenda including activities at the National Personal
Protective Technology Laboratory. In addition to improving workers
safety, investments in protective technology will help our nation
respond to the growing threat of bioterrorism. The ATS also recommend
an additional $10 million for NIOSH-sponsored prevention, intervention
and information programs. These programs respond to existing workplace
health programs, conduct prevention education programs and work with
labor and industry groups to lower the risk of workplace injury and
illness.
A recent IOM Report, Safe Work in the 21st Century: Education and
Training Needs for the Next Decades Occupational Safety and Health
Personnel, identified a growing shortage of trained occupational health
professionals in the United States. Unlike the majority of medical
subspecialties, occupational health professionals do not receive
Medicare training support. We recommend $10 million for Capacity
Building for Worker safety and health including training opportunities
for occupational health professionals at NIOSH-sponsored Centers of
Excellence. The ATS believe more funds are needed to track the
incidence of serious work-related illnesses and injury.

Physician Workforce Supply
The ATS is also concerned about the supply of physicians in the
United States. A recent study published in the Journal of the American
Medical Association predicts that there will be an acute shortage of
physicians trained to treat patients with critical care illness and
lung disease starting in 2007.\1\ While the study focuses on supply of
pulmonary/critical care physicians, what is driving the shortage is the
predicated increase in demand for physician services caused by the
aging of the U.S. population.
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\1\ D. Angus, et al. Current and Project Workforce Requirements for
Care of the Critically Ill and Patients with Pulmonary Disease: Can We
Meet the Requirements of an Aging Population? JAMA 2000; 284:2762-2770.
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Policy makers have given much thought and attention to how the
aging population will effect Social Security and other programs for the
elderly. Significant attention has been given to the acute shortage of
nurses. However, such forward thinking does not seem to be applied to
our physician workforce.
We are pleased that Bureau of Workforce Analysis at HRSA will be
conducting a study on physician workforce supply in the United States.
The ATS is hopeful that HRSA study will confirm the looming shortage of
physicians in United States and make policy recommendations on how best
to add physicians to the workforce before it becomes a serious crisis.

LUNG-DISEASE OPPORTUNITIES AND ADVANCES

Pulmonary researchers have made significant advances in lung
disease research. NHBLI has identified areas of lung disease research
that they will be exploring in the next year. One area of focus will be
with acute lung injury (ALI) and acute respiratory distress syndrome
(ARDS). NHLBI created Specialized Centers of Clinically Oriented
Research (SCCOR) in translational research in acute lung injury.
Patients experiencing ALI and ARDS suddenly develop severe lung
inflammation that results in hypoxemia, loss of lung compliance and
possibly multi-organ system failure. The SCCOR program will foster
multi-disciplinary basic and clinical research related to ALI and ARDS,
which will eventually have a positive impact on their prevention,
diagnosis and treatment.
Another area of focus is COPD and lung cancer research. As
mentioned earlier, COPD is the fourth leading cause of death and
disability in this country. Nearly a quarter of a million Americans die
each year of either COPD or lung cancer. NHLBI hopes to address the gap
in knowledge that a common pathogenetic mechanism may be involved as a
risk factor for COPD and lung cancer. The research will focus on a
search for the similarities of the cellular and molecular mechanisms
that lead to COPD and lung cancer. This new research could have
important implications for the prevention and management of both
diseases.
In conclusion, lung disease is a 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. Overall,
lung disease and breathing problems constitute the number one killer of
babies under the age of one year. Worldwide, tuberculosis kills three
million people each year, more people than any other single infectious
agent. The level of support this committee approves for lung disease
programs should reflect the urgency illustrated by these numbers.

______

Prepared Statement of the Cystic Fibrosis Foundation

INTRODUCTION

On behalf of the Cystic Fibrosis Foundation, I am pleased to submit
this statement to the Appropriations Subcommittee for Labor, Health and
Human Services, and Education. The CF Foundation appreciates the
opportunity to share with you the latest advances in cystic fibrosis
(CF), and a recommendation for a strong federal role in the fight
against this disease. The CF Foundation is committed to finding a cure
and believes our efforts will be accelerated, with your support, by
encouraging a more expansive partnership with the National Institutes
of Health (NIH).
We are truly grateful for the leadership of this Subcommittee in
doubling the appropriations for the NIH over the past five years. With
the doubling of the budget complete, we urge the Subcommittee to
maintain its diligence to ensure that the NIH continues to flourish and
that we reap the benefits of our world leadership in biomedical
research.
Congress and the NIH have an opportunity now to impact CF research.
We urge you and your colleagues to encourage the NIH to support the
mission of the CF Foundation in its tremendous undertaking to translate
basic research advances into new treatments. Because CF is an
``orphan'' disease, the role of the NIH in translating basic research
into treatments is even more critical. The CF Foundation was pleased
with the passage of The Rare Disease Act of 2002, as this new law
focuses the NIH on supporting clinical trial networks for rare
diseases. Recognizing the importance of clinical research in future
treatments, the CF Foundation established a clinical trials program,
the Therapeutics Development Network (TDN), in 1998. It includes strong
patient protections and a centralized data management system. It has
been acknowledged by NIH staff and others as a model for conducting
clinical trials, especially for rare diseases.
To help move CF clinical research forward, we ask the Subcommittee
to urge the NIH to partner with the CF Foundation to strengthen and
expand the Therapeutics Development Network. We believe an expanded
collaboration between the NIH and the CF TDN would have two clear
benefits: (1) it would accelerate the pace of research on new CF
treatments; and (2) it would provide valuable information to the NIH
regarding the optimal structure of clinical trials networks for other
rare genetic or metabolic diseases. By encouraging the NIH's support of
CF research, this partnership offers Congress the opportunity to
champion promising, mission-driven research.
We ask the Subcommittee to specifically recognize the National
Center for Research Resources (NCRR) for its leadership in supporting
innovative clinical trials networks to test new therapies and to
accelerate the translation of basic research findings into new
treatments. NCRR has fostered the development of networks, such as the
TDN. To meet the growing opportunities for CF clinical trials, we urge
the Subcommittee to encourage the NIH, through NCRR or the Office of
Rare Diseases, to commit $5 million per year for the next five years to
expand its support for clinical trials networks for new cystic fibrosis
therapies. This contribution will allow additional clinical trials to
be initiated and more therapies to be tested thereby meeting the urgent
needs of people with CF for the development of new therapies.

CYSTIC FIBROSIS: THE DISEASE

We have come a long way in the battle against CF. When a child was
diagnosed with CF in 1960, that child had a life expectancy of less
than 10 years. Today, children who are diagnosed with CF have a
predicted life expectancy of more than 30 years. Despite this
tremendous progress, it is obviously not the cure we seek. Thirty years
represents less than half of the average American lifespan. More must
be done if we are to give all people with CF hope for a healthy future.
CF is a genetic disease that affects approximately 30,000 children
and adults in the United States. An individual must inherit a defective
copy of the CF gene from each parent to have the disease. CF causes the
body to produce abnormally thick, sticky mucus, due to the faulty
transport of sodium and chloride to the outer surfaces of the cells
that line organs, such as the lungs and pancreas. Individuals with CF
experience persistent coughing and wheezing and are particularly
susceptible to chronic lung infections, including pneumonia. A
bacterial or viral infection that minimally slows down a person without
CF could be devastating and potentially life-threatening to someone
with the disease. Individuals with CF also may have excessive appetite
but poor weight gain because the pancreas is obstructed and digestive
enzymes cannot reach the intestines.
Treatments for CF vary based on the severity of the disease. Most
people with CF are treated by chest physical therapy, which requires
vigorous percussion on the back and chest manually or with the use of
mechanical devices to dislodge the thick mucus from the airways.
Powerful antibiotics, which may be administered intravenously, orally,
and by aerosol, may be used to treat lung infections to prevent life
threatening lung damage. Individuals with CF cannot absorb enough
nutrients; to maintain their health and avoid malnutrition, they need
to eat an enriched diet and take both replacement vitamins and
pancreatic enzymes. Eventually, lung transplantation may be necessary,
which offers the few patients who successfully receive donated organs a
new chance for a healthy future.

ADVANCES IN CF RESEARCH

With the fiftieth anniversary of the discovery of DNA by Watson and
Crick upon us this month, we must pause to appreciate the knowledge and
dedication of the scientists who opened the doors to genetic research.
We continue to marvel at the complexity of medical science and the
elusiveness of unlocking the mysteries of genetic disease. With the
discovery of the gene that causes CF in 1989 by scientists supported by
the CF Foundation, there continues to be great optimism about new
therapies that can result from this groundbreaking genetic research.
Just last year, researchers supported in part by the CF Foundation
announced progress in applying gene therapy to CF. This latest
application resulted in a fruitful but transient effect of the gene in
the cells of patients with CF. We continue to believe in the promise of
gene therapy and explore multiple avenues to develop this field of
research.
Another advancement last year showed the effectiveness of
azithromycin, a commonly prescribed antibiotic, in reducing
inflammation in the airways, and improved lung function. This trial was
conceived of and supported by the CF Foundation. It confirmed anecdotal
reports that this drug might benefit the overall respiratory health of
CF patients.
Despite these recent successes, the fate of compounds in the lab
today, and the future of people with CF, lie in the hands--still--of
the CF Foundation. With the economy flagging, more biotech companies
find it difficult to raise venture capital funds. And those who are
interested in CF are coming to the CF Foundation for financial
assistance. Although they bring exciting research that promises to make
a difference in this disease, many of these compounds--and many of
these companies--will disappear in the current economic environment.
The CF Foundation is being asked to do more that it can possibly do
to treat and cure this disease. It is difficult to say no to any
project that might be ``the one'' that saves these individuals lives.
However, it is not possible for the CF Foundation to take up the
faltering reigns of the biotech industry alone. We must build a
stronger partnership with the NIH if we are to save lives of people
with CF today.

BENEFITS OF PARTNERSHIP TO NIH

Why should the NIH join forces with the CF Foundation? With our
dedication to curing this disease, we have taken it upon ourselves to
pursue promising research leads in rapid fashion and to support
national standards of care to assist those with the disease. Many
generous individual and corporate donors and successful special fund-
raising events have joined our efforts. Supporters in the past few
years include the Bill and Melinda Gates Foundation and Tom and Cydney
Marsico. However, with the current state of the economy, and the
uncertainty it brings to our continued fund-raising successes, we
cannot achieve this goal alone. We believe a broader partnership with
NIH will inure great benefits to both partners.
Founded in 1955 by parents who wanted to cure this disease in their
children, the CF Foundation today supports a broad array of CF research
and health care initiatives. These initiatives include:
--Accrediting and supporting more than 115 CF care centers at major
teaching hospitals and community hospitals across the country.
These care centers offer comprehensive diagnosis and treatment
services to individuals with CF, improving the lives of
patients with CF at these centers.
--Maintaining a national registry with data on patients with CF and
their health status, a database that remains vitally important
to ongoing efforts to improve the quality of health care for
individuals with CF.
--Sponsoring a Therapeutics Development Program to pursue CF drug
development, from the discovery of promising compounds through
clinical evaluation. This program applies cutting-edge
technologies to the screening of potential drug candidates,
their evaluation in the laboratory, and their testing in pre-
clinical studies and clinical trials, including large-scale
studies involving patients with CF. In essence, a virtual
pipeline for the development of drugs to treat CF is now
underway.
--Funding grants to scientists to conduct CF research. The CF
Foundation's awards include new investigator research grants,
pilot and feasibility grants, clinical research grants,
research fellowships, clinical fellowships, and student
traineeships.
--Supporting 10 Research Development Program centers for basic
research projects at leading universities and medical schools
that focus on CF.
--Maintaining a centralized laboratory dedicated to identification of
Burkholderia cepacia complex, a species of bacteria found in
agricultural and consumer products that can be lethal to
individuals with CF.

Exploring Clinical Research: The Therapeutics Development Network
All of the promising basic research advances in the nation cannot
lead to new therapies without being tested in clinical trials. In 1998,
the CF Foundation built an outstanding clinical trials program, the
Therapeutics Development Network (TDN), to conduct clinical trials to
evaluate new therapies. The TDN provides access to top CF researchers
to conduct trials, and to numerous patients who can enroll in trials.
It plays a pivotal role in accelerating the development of new CF
treatments to improve and save the lives of individuals with CF.
The clinical research within the TDN is focused on five types of
treatment strategies: gene therapy, protein-assist therapies, chloride
channel treatments, anti-inflammatory therapy, and anti-infection
therapy. The comprehensive approach of the TDN is dictated by the fact
that a cure for CF will probably be a combination of gene therapy,
protein repair therapy, and drug or other therapies. Through the
network, ten trials have been completed, and as many as ten more have
been undertaken in recent months.
With the discovery of multiple drug compounds that must be tested
before becoming new CF therapies, the CF Foundation has increased the
number of medical institutions in the TDN. This past fall, we increased
the network from eight centers to 14 around the country, which now
includes centers at the University of Iowa and the Children's Hospital
of Pittsburgh as well as ten other states. This expansion will help to
speed up the examination of more potential therapies--speed that is
essential to improve the health of these young people. They cannot wait
half of their lifetime to obtain new treatments--which is the average
time, 14 years, that it takes industry to develop a new drug.
Furthermore, this speed does not compromise patient safety, because of
the establishment of a data safety monitoring board, ethical advisors,
patient safety committees, and other safeguards.
Today, the most significant challenge facing the CF Foundation is
to ensure that we have the financial resources necessary for the
expansion of the clinical trials network in order to pursue all the
promising translational and clinical research opportunities before us.

An Opportunity for a Promising Partnership
The NIH has always made an incredible impact on our nation's basic
research accomplishments. Now, it is important that the NIH join forces
with the private non-profit sector to take the next step to translate
this basic research into treatments. With the interest of Congress, and
the passion of the new NIH director, we feel great confidence that the
NIH is making clinical research a priority. Many NIH institutes have
clinical trials networks or collaborate with the private sector in
undertaking clinical trials. These partnerships are making a difference
in the lives of millions of Americans.
We request that the Subcommittee encourage the NIH to enter into a
renewed partnership with the CF Foundation to support a rejuvenated CF
clinical trials network. The Subcommittee has placed great faith in the
biomedical research enterprise by providing significant boosts in NIH
funding. We hope that the Subcommittee will now urge a robust public-
private partnership in CF clinical trials to promote the goal of all
basic research findings--helping patients to overcome disease and live
longer, healthier lives. By working together, we can continue adding
tomorrows every day.
Thank you again for the opportunity to submit this statement. The
CF Foundation looks forward to working with Congress in continuing to
support this biomedical research enterprise--one of the remarkable
assets of this great nation.

______

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 2004 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 would like to thank the Subcommittee for its continued strong
support for increased funding for the National Institutes of Health
(NIH) over the last several years, particularly the additional funding
you have provided for the National Institute of Mental Health (NIMH),
the National Institute on Aging (NIA), the National Institute on
Alcohol Abuse and Alcoholism (NIAAA), and the Center for Mental Health
Services (CMHS) within 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.
There are serious concerns, shared by AAGP and researchers,
clinicians, and consumers that there exists a critical disparity
between appropriations for research, training, and health services and
the projected mental health needs of older Americans. This disparity is
evident in the convergence of several key factors:
--demographic projections inform us that, with the aging of the U.S.
population, there will be an unprecedented increase in the
burden of mental illness among aging persons, especially among
the baby boom generation;
--this growth in the proportion of older adults and the prevalence of
mental illness is expected to have a major direct and indirect
impact on general health service use and costs;
--despite the fact that effective treatment exists, the current
mental health needs of many older adults remain unmet;
--the number of physicians being trained in geriatric mental health
research and clinical care is insufficient to meet current
needs, and this workforce shortfall is projected to become a
crisis as the U.S. population ages over the next decade;
--a major gap exists between research, mental health care policy, and
service delivery; and
--despite recent significant increases in appropriations for support
of research in mental health, the allocation of NIMH and CMHS
funds for research that focuses specifically on aging and
mental health is disproportionately low, and woefully
inadequate to deal with the impending crisis of mental health
in older Americans.

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. A national crisis in
geriatric mental health care is emerging and has received recent
attention in the medical literature. Action must be taken now to avert
serious problems in the near future. While many different types of
mental and behavioral disorders can occur late in life, they are not an
inevitable part of the aging process, and continued research holds the
promise of improving the mental health and quality of life for older
Americans.
The current number of health care practitioners, including
physicians, who have training in geriatrics is inadequate. As the
population ages, the number of older Americans experiencing mental
problems will almost certainly increase. Since geriatric specialists
are already in short supply, these demographic trends portend an
intensifying shortage in the future. There must be a substantial public
and private sector investment in geriatric education and training, with
attention given to the importance of geriatric mental health needs. We
will never have, nor will we need, a geriatric specialist for every
older adult. However, without mainstreaming geriatrics into every
aspect of medical school education and residency training, broad-based
competence in geriatrics will never be achieved. There must be adequate
funding to provide incentives to increase the number of academic
geriatricians to train health professionals from a variety of
disciplines, including geriatric medicine and geriatric psychiatry.
Current and projected economic costs of mental disorders alone are
staggering. The direct medical expense to care for a patient with
Alzheimer's disease ranges from $18,000 to $36,000 a year per patient,
depending on the severity of the disease. In addition, there are
substantial indirect costs associated with caring for an Alzheimer's
disease patient including social support, care giving, and often
nursing home care. 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. Although NIA has supported
extensive research on the cause and treatment of Alzheimer's, treatment
of these behavioral and psychiatric symptoms has been neglected and
should be supported through NIMH.
Depression is another example of a common problem among older
persons. Of the approximately 32 million Americans who have attained
age 65, about five million suffer from depression, resulting in
increased disability, general health care utilization, and increased
risk of suicide. Older adults have the highest rate of suicide rate
compared to any other age group. Approximately 30 percent of older
persons in primary care settings have significant symptoms of
depression; and depression is associated with greater health care
costs, poorer health outcomes, and increased mortality.
The enormous and widely underestimated costs of late-life mental
disorders justify major new investments. The personal and societal
costs of mental illness and addictive disorders are high, but advances
in research and treatment will help save lives, strengthen families,
and save taxpayer dollars.

The Benefits of Research on Public Health
The U.S. Surgeon General's Report on Mental Health (1999) and the
Administration on Aging Report on Older Adults and Mental Health (2001)
underscore the prevalence of mental disorders in older persons and
provide evidence that research has lead to the development of effective
treatments. These reports summarize research findings showing that
treatments are effective in relieving symptoms, improving functioning,
and enhancing quality of life. Preliminary findings suggest that these
interventions reduce the need for expensive and intensive acute and
long-term services. However, it is also well demonstrated that there is
a pronounced gap between research findings on the most effective
treatment interventions and implementation by health care providers.
This gap can be as long as 15 to 20 years. These reports stress the
need for translational and health services research focused on
identifying the most cost-effective interventions, as well as creating
effective methods for improving the quality of health care practice in
usual care settings. A major priority (neglected to date) is the
development of a health services research agenda that examines the
effectiveness and costs of proven models of mental health service
delivery for older persons.
Special attention also needs to be paid to inadequately or poorly
studied, serious late-life mental disorders. Illnesses such as
schizophrenia, anxiety disorders, alcohol dependence and personality
disorders have been largely ignored by both the research community and
the funding agencies, despite the fact that these conditions take a
major toll on patients, their care givers, and society at large. Many
of AAGP's members are at the forefront of groundbreaking research on
Alzheimer's disease, depression, and psychosis among the elderly, and
we strongly believe that more research funds must be focused in these
areas. Improving the treatment of late-life mental health problems will
benefit not only the elderly, but also their children, whose lives are
often profoundly affected by their parents' illness.
While the funding increases supported by this Subcommittee in
recent years have been essential first steps to a better future, a
committed and sustained investment in research is necessary to allow
continuous progress on the many research advances made to date.

National Institute of Mental Health
Fiscal year 2003 marked the end of the five-year, bipartisan effort
in Congress to double the NIH budget. In his fiscal year 2004 budget,
the President proposed an increase of $498 million over fiscal year
2003, which would bring the entire NIH budget to a level of $27.7
billion. This 1.8 percent increase pales in comparison with previous
double-digit annual increases. A decline in budget increases could have
a devastating impact on the ability of NIMH, and NIH as a whole, to
sustain the ongoing, multi-year research grants that have been
initiated over the last two to three years.
For NIMH, the President is proposing $1.382 billion for scientific
and clinical research, an increase over the agency's fiscal year 2003
appropriation of $1.349 billion. It is important to note that from
fiscal year 1999 through fiscal year 2003, NIMH received increases that
lagged behind the increases of other institutes. The 8.4 percent
increase that NIMH received for fiscal year 2003 was far below the
average 12 to 13 percent increases received by other institutes from
fiscal year 1999 through fiscal year 2002. This fall-off for fiscal
year 2003 is the result of disproportionately large increases for bio-
terrorism research at the National Institute for Allergy and Infectious
Diseases and a reallocation of funds from across NIH to the Centers for
Disease Control. As Congress moves forward with deliberations on the
fiscal year 2004 budget, AAGP believes that NIMH should receive a
percentage increase that, at the very minimum, is at least equal to the
average percent increase for the other NIH institutes.
Commendable as recent funding increases for NIH and NIMH have been,
AAGP would like to call the Subcommittee's attention to the fact that
these increases have not always translated 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).
AAGP is pleased that in recent months NIMH has renewed its emphasis
on mental disorders among the elderly, and commends the creation of an
intra-NIMH consortium of scientists concerned with mental disorders in
the aging population. However, funding for aging mental health research
is still not keeping pace with that of other adult mental health
research, and is actually decreasing proportionally when considered in
the context of anticipated projections in growth of mental disorders in
older persons. For example, the proportion of total NIMH newly funded
extramural research grant funding devoted to aging research declined
from an average of eight percent from fiscal years 1995 to 1999 to a
low of six percent in fiscal year 2000. To reverse this trend, it will
also be important to constitute grant review committees with
specialized expertise in geriatrics to ensure fair review of research
proposals. Review committees must take into account knowledge of the
unique biological factors associated with the aging brain, the high
prevalence of co-occurring medical illnesses, and the specific systems
for financing and health services delivery for older Americans.
In addition to supporting research activities at the NIMH, AAGP
supports increased funding for research related to geriatric mental
health at the other institutes of the NIH that address issues relevant
to mental health and aging, including the National Institute of Aging
(NIA), the National Institute on Alcohol Abuse and Alcoholism (NIAAA),
and the National Institute of Neurological Disorders and Stroke.

Center for Mental Health Services
It is also critical that there be adequate funding increases for
the mental health initiatives under the jurisdiction of the 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 both fiscal year
2002 and fiscal year 2003 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 first step in addressing the mental health
needs of the nation's senior citizens.
Funding for the dissemination and implementation of evidence-based
practices in ``real world'' care settings must be a top priority for
Congress. Despite significant advances in research on the causes and
treatment of mental disorders in older persons, there is a major gap
between these research advances and clinical practice in usual care
settings. The greatest challenge for the future of mental health care
for older Americans is to bridge this 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 2003 be increased to $20 million for fiscal year 2004.
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 be a collaborative effort, actively involving family
members, consumers, mental health practitioners, experts, professional
organizations, academics, and mental health administrators. With $10
million dedicated to a program to disseminate and implement evidence-
based practice in geriatric mental health, there will be an assured
focus on facilitating accurate, broad-based sustainable implementation
of proven effective treatments, with an emphasis on practice change and
consumer outcomes. Such a program should include several development
phases including identification of a core set of evidence-based
practices, development of evidence-based implementation, and practice
improvement toolkits and field-testing of evidence-based
implementation. 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.

Agency for Healthcare Research and Quality
One of the most valuable resources in our efforts to improve access
to and the quality of geriatric mental health services is the Agency
for Healthcare Research and Quality (AHRQ). In recent years the Agency
has supported important research on mental health topics including
studies on children's mental health issues, the impact of mental health
parity on consumers' share of mental health costs, improving care for
depression in primary care, and cultural issues in the treatment of
mental illness in minority populations. This work has led to important
contributions to the mental health literature, and the advancement of
effective diagnosis and treatment of mental illness. We applaud these
efforts and urge the Committee to increase support for the critical
work of this Agency.
However, we are concerned that the research agenda of the Agency
has not given more attention to geriatric mental health issues. The
prevalence of undiagnosed and untreated mental illness among the
elderly is alarming. Conditions such as depression, anxiety, dementia,
and substance abuse in older adults are often misdiagnosed or not
recognized at all by primary and specialty care physicians. There is
accumulating evidence that depression can exacerbate the effects of
cardiac disease, cancer, strokes, and diabetes. Research has also shown
that treatment of mental illness can improve health outcomes for those
with chronic diseases. Effective treatments for mental illnesses in the
elderly are available, but without access to physicians and other
health professionals with the training to identify and treat these
conditions, far too many seniors fail to receive needed care.
AAGP believes there is an urgent need to translate findings from
aging-related biomedical and behavioral research into geriatric mental
health care. By utilizing the resources of the evidence-based practice
centers under contract to AHRQ, results from geriatric mental health
research can be evaluated and translated into findings that will
improve access, foster appropriate practices, and reduce unnecessary
and wasteful health care expenditures. We urge the Committee to direct
AHRQ to support additional research projects focused on the diagnosis
and treatment of mental illnesses in the geriatric population. We also
believe a high priority should be given to the dissemination of
scientific findings about what works best, to encourage physicians and
other health professionals to adopt ``best practices'' in geriatric
mental health care.

Conclusion
Based on AAGP's assessment of the current need and future
challenges of late life mental disorders, we submit the following
fiscal year 2004 funding recommendations:

The current rate of funding for aging grants at NIMH and CMHS
is inadequate. Funding for NIMH and CMHS aging-related research
grants should be increased to be commensurate with current
need--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.
A fair grant review process will be enhanced by committees
with specific expertise and dedication to mental health and
aging;
Infrastructure and reporting mechanisms within NIMH and CMHS
are essential to support the development of initiatives in
aging research, to monitor the number and quality of applicants
for aging research grants, to promote funding of meritorious
projects, and to manage those grant portfolios. Those
individuals in the Office of the Director of NIMH and in the
Office of the Director of CMHS who are designated to oversee
the aging research agendas and initiatives for these two
agencies should provide regular reports to Congress to ensure
accountability;
AHRQ should undertake additional research projects focused on
the diagnosis and treatment of mental illnesses in the
geriatric population, and dissemination of information on best
practices; and
Funding for NIAAA must be increased by at least 20 percent to
enable it to undertake more research and collect more data
focused on issues such as the link between alcohol use and
late-life suicide and the impact of alcohol use across the
lifespan.
AAGP strongly believes that the present research infrastructure,
professional workforce with appropriate geriatric training, health care
financing mechanisms, and mental health delivery systems are grossly
inadequate to meet the challenges posed by the expected increase in the
number of older Americans with mental disorders. Congress must support
funding for research that addresses the diagnosis and treatment of
mental illnesses, as well as programs for delivery of geriatric mental
health services that increase the quality of life for those with late-
life mental illness.
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 NIMH, CMHS, AHRQ and NIAAA.

______

Prepared Statement of the Hepatitis Foundation International

SUMMARY OF FISCAL YEAR 2004 RECOMMENDATIONS

Continue the great strides in research and prevention at the
National Institutes of Health (NIH) by providing a 10 percent budget
increase for fiscal year 2004. Increase funding for the National
Institute for Allergy and Infectious Diseases (NIAID) and the National
Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) by 10
percent.

[In billions of dollars]

NIIH.............................................................. 29.8
NIAID............................................................\1\ 3.9
NIDDK............................................................. 1.7

\1\ Non-bioterrorism.

--Provide $7.9 billion in fiscal year 2004 for the Centers for
Disease Control and Prevention (CDC).
--Provide $41 million in fiscal year 2004 for a hepatitis B
vaccination program for high risk adults at CDC as recommended
by the National Hepatitis C Prevention Strategy.
--Provide $40 million in fiscal year 2004 for CDC's Prevention
Research Centers.
--Provide continued support of the National Viral Hepatitis
Roundtable.
Chairman Specter and members of the subcommittee thank you for your
continued leadership in promoting better research, prevention, and
control of diseases affecting the health of our nation. I am Thelma
King Thiel, Chairman and Chief Executive Officer of the Hepatitis
Foundation International (HFI), representing members of 425 patient
support groups across the nation, the majority of whom suffer from
chronic viral hepatitis.
Currently, five types of viral hepatitis have been identified,
ranging from type A to type E. All of these viruses cause acute, or
short-term, viral hepatitis. 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 all types of
hepatitis, individuals with chronic viral hepatitis (types B, C, and D)
represent the majority of liver failure and transplant patients.
Treatment options and immunizations are available for most types of
hepatitis (see below), however, all types of viral hepatitis are
preventable.

HEPATITIS B

Hepatitis B (HBV) claims an estimated 5,000 lives every year in the
United States, even though we have therapies to both prevent and treat
this disease. This disease is spread through contact with the blood and
body fluids of an infected individual. Unfortunately, due to both a
lack in funding to vaccinate adults at high risk of being infected and
the absence of an integrated preventive education strategy transmission
of hepatitis B continues to be problematic.

HEPATITIS C

Infection rates for hepatitis C (HCV) are at epidemic proportions.
Unfortunately, as many do not become ill with the disease until several
years after infection, we are dealing with an ``epidemic of
discovery''. This creates a vicious cycle, as individuals who are
infected continue to spread the disease, unknowingly. Hepatitis C is
also spread through contact with an infected individual's blood. The
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, new
research is undertaken, and case-finding is enhanced and more effective
treatments are developed. As there is no vaccine for HCV, prevention
activities serve as the only tool in halting the spread of this
disease.

PREVENTION IS THE KEY

Only a major investment in immunization and preventive education
will bring these diseases under control. All newborns, young children,
young adults, and especially individuals that participate in high-risk
behaviors must be a priority for immunization, outreach initiatives and
preventive education. We recommend that the following activities be
undertaken to prevent the further spread of all types of hepatitis:
--Provide effective preventive education in our elementary and
secondary schools helping children avoid the ravages of health
problems resulting from viral hepatitis infection.
--Training educators and health care professionals in effective
communication and counseling techniques.
--Public awareness campaigns to alert individuals to assess their own
risk behaviors, motivate them to seek medical advice, encourage
immunization against hepatitis A and B, and to stop the
consumption of any alcohol if they have participated in risky
behaviors that may have exposed them to hepatitis C.
--Expansion of screening, referral services, medical management,
counseling, and prevention education for individuals who have
HIV/AIDS, many of whom may be co-infected with hepatitis.
HFI recommends an increase of $41 million in fiscal year 2004 for
further implementation of CDC's Hepatitis C Prevention Strategy. This
increase will support and expand the development of state-based
prevention programs by increasing the number of state health
departments with CDC funded hepatitis coordinators. The Strategy will
use the most cost-effective way to implement demonstration projects
evaluating how to integrate hepatitis C and hepatitis B prevention
efforts into existing public health programs. Additionally, HFI
recommends that $10 million be used to train and maintain hepatitis
coordinators in every state.
CDC's Prevention Research Centers, an extramural research program,
plays a critical role in reducing the human and economic costs of
disease. Currently, CDC funds 26 prevention research centers at schools
of public health and schools of medicine across the country. HFI
encourages the Subcommittee to increase core funding for these
prevention centers, as it has been decreasing since this program was
first funded in 1986. We recommend the Subcommittee provide $40 million
for the Prevention Research Centers program in fiscal year 2004.

INVESTMENTS IN RESEARCH

Investment in the National Institutes of Health (NIH) has led to an
explosion of knowledge that has advanced understanding of the
biological basis of disease and development of strategies for disease
prevention, diagnosis, treatment, and cures. Countless medical advances
have directly benefited the lives of all Americans. 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. Other areas that need to be addressed are:
--Reasons why African Americans do not respond to antiviral agents in
the treatment of chronic hepatitis C.
--Pediatric liver diseases, including viral hepatitis.
--The outcomes and treatment of renal dialysis patients who are
infected with HCV.
--Co-infections of HIV/HCV and HIV/HBV positive patients.
--Hemophilia patients who are co-infected with HIV/HCV and HIV/HBV.
--The development of effective treatment programs to prevent
recurrence of HCV infection following liver transplantation.
--The development of effective vaccines to prevent HCV infection.
The Hepatitis Foundation International supports a 10 percent
increase, which would provide $29.78 billion for NIH in fiscal year
2004. HFI also recommends a comparable increase of 10 percent in
hepatitis research funding at the National Institute of Diabetes and
Digestive and Kidney Diseases and the National Institute of Allergy and
Infectious Diseases.

NATIONAL VIRAL HEPATITIS ROUNDTABLE

Victims of hepatitis suffer emotionally as well as physically. They
experience discrimination in employment, strained personal
relationships and severe depression when treatments fail to control
their illness as well as during their treatment. Traditionally,
however, there has not been an organized effort to periodically convene
all stakeholder organizations that play a role in hepatitis prevention,
education, treatment and patient advocacy. Successfully addressing
viral hepatitis will require a comprehensive and strategic approach
developed by all key stakeholders.
In order to fill this void, HFI and CDC co-founded the ``National
Viral Hepatitis Roundtable''. HFI believes that a National Viral
Hepatitis Roundtable will enhance and assist CDC's viral hepatitis
mission for the prevention, control, and elimination of hepatitis virus
infections in the United States, as well as the international public
health community. It will provide an infrastructure for the sharing of
information and education of all stakeholders.
The ``National Viral Hepatitis Roundtable'' is a coalition of
public, private, and voluntary organizations dedicated to reducing the
incidence of infection, morbidity, and mortality from viral hepatitis
in the United States through research, strategic planning,
coordination, advocacy, and leadership.
This organization acts in an advisory capacity to all parties
interested in topics pertaining to viral hepatitis. The Roundtable
first convened on January 13, 2003.
HFI is dedicated to the eradication of viral hepatitis, which
affects over 500 million people around the world. We seek to raise
awareness of this enormous worldwide problem and to motivate people to
support this important--and winnable--battle. Thank you for providing
this opportunity to present our testimony.

THE HEPATITIS FOUNDATION INTERNATIONAL

The Hepatitis Foundation International (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 motivate people to support this important--and
winnable--battle.
Our mission has four distinct parts:
--Teach the public and hepatitis patients how to prevent, diagnose,
and treat viral hepatitis.
--Prevent viral hepatitis by promoting liver wellness and healthful
lifestyles.
--Serve as advocates for hepatitis patients and the related medical
community worldwide.
Support research into prevention, treatment, and cures for viral
hepatitis.

______

Prepared Statement of the FacioScapuloHumeral Muscular Dystrophy Society

Mr. Chairman, it is a great pleasure to submit this testimony to
you today.
My name is Daniel Paul Perez, of Lexington, Massachusetts, and I am
testifying as President & Chief Executive Officer of the
FacioScapuloHumeral Muscular Dystrophy Society (FSH Society, Inc.) and
as an individual who has this devastating disorder.
Facioscapulohumeral muscular dystrophy (FSHD) is the third most
prevalent form of muscle disease. FSHD is a neuromuscular disorder that
is transmitted genetically to 1/20,000 people. It affects up to 37,500
persons in the United States. FSHD can occur at any time by new
mutations in the chromosome. 20-30 percent of people affected by FSHD
are believed to be new mutations. For men and women, the major
consequence of inheriting FSHD is progressive and severe loss of
skeletal muscle. The usual pattern is of initial noticeable weakness of
facial, scapular and upper arm muscles and subsequent weaknesses of
other skeletal muscles. Retinal and cochlear disease can often be
associated with FSHD although the pathogenesis and causative
relationship to FSHD remains unknown. FSHD wastes the skeletal muscles
and gradually but surely brings weakness and reduced mobility. Many
with FSHD are severely physically disabled and spend the last 30 years
of their lives in a wheelchair. The toll and cost of FSHD physically,
emotionally and financially are enormous. FSHD is a life long disease
that has an enormous cost-of-disease burden and is a life sentence for
the innocent patient and involved persons and their children and
grandchildren as well.
People who have FSHD must cope with continuing, unrelenting and
never-ending losses. The most unlucky, those who are affected from
birth, are deprived of virtually all the ordinary joys and pleasures of
childhood and adolescence. No matter at which stage of life the disease
makes itself known, there is never after that any reprieve from
continuing loss of physical ability or ever for a moment relief from
the physical and emotional pain that FSHD brings in its train. Every
morning, FSHD sufferers wake up to face the reality that neither a
cause for their disease nor any treatment for it has yet been found.
FSHD denies a person the full range of choices in life. FSHD
affects the way you walk, the way you dress, the way you work, the way
you wash, the way you sleep, the way you relate, the way you parent,
the way you love, the way and where you live, the way people perceive
you, interact with you and treat you. You cannot smile, hold a baby in
your arms, close your eyes to sleep, run, walk on the beach or climb
stairs. Each new day brings renewed awareness of the things you may not
be able to do the next day. This is what life is for tens of thousands
of people affected by FSHD worldwide.
Through the FSH Society, FSHD patients have found ways to be useful
to medical and clinical researchers working on their disease. The FSH
Society acts as a clearinghouse for information on the FSHD disorder
and on potential drugs and devices designed to alleviate its effects.
It fosters communication among FSHD patients, their families and
caregivers, charitable organizations, government agencies, industry,
scientific researchers and academic institutions. It solicits grants
and contributions from members of the FSH Society, and from
foundations, the pharmaceutical industry, and others to support
scientific research and development. It makes grants and awards to
qualified research applicants. In less than six years, the FSH Society
has raised more than $1.1 million for research and has invested it in
more than two dozen innovative research programs internationally. One
of the FSH Society's key assets, its Scientific Advisory Board, is
composed of international experts whose awareness of current FSHD
research ensures both that new research is not duplicative but
complementary and that it will fill gaps in existing knowledge. The FSH
Society's work in education, advocacy, and training has led to
increased funding in the United States and abroad. It was a key
participant in drafting the Muscular Dystrophy Community Assistance
Research and Education Act of 2001 (MD CARE Act) which in the United
States mandates research and investigation into all forms of Muscular
Dystrophy.
A decade of progress in FSHD has led to the discovery of many novel
genetic phenomena never seen before in human disease and genomics.
Despite remarkable genetic insight and immense progress by a small team
of scientists worldwide, the nature of the gene products remain
enigmatic and the biochemical mechanism and cause of this common muscle
disease remains unknown and elusive. The same is true for any
treatment--none exist.
More than a decade ago, we appeared before this Committee to
testify for the first time. Ten years ago, I walked with some
difficulty. Today, I sit in a wheelchair because of this disease called
FSHD. Over the same ten years, the Appropriations Committees in both
the U.S. House and the U.S. Senate have repeatedly instructed the
National Institutes of Health (NIH) to enhance and broaden the
portfolio in FSHD and muscular dystrophy in general. The NIH accounting
for the total overall NIH and the subset of muscular dystrophy
appropriations in millions of dollars for the past five years follows:

NATIONAL INSTITUTES OF HEALTH (NIH) APPROPRIATIONS HISTORY
[Dollars in millions]
----------------------------------------------------------------------------------------------------------------
NIH MD MD FSH FSHD FSHD
Fiscal year overall research percent research percent percent
dollars dollars of NIH dollars of MD of NIH
----------------------------------------------------------------------------------------------------------------
1999.......................................... $15,629 $16.7 0.107 $0.4 2.39 0.0026
2000.......................................... 17,821 12.6 0.071 0.4 3.18 0.0022
2001.......................................... 20,458 21.0 0.103 0.5 2.38 0.0024
2002.......................................... 23,296 27.6 0.118 1.3 4.71 0.0056
2003.......................................... 27,067 31.4 0.116 1.5 4.78 0.0055
----------------------------------------------------------------------------------------------------------------
Source: NIH/OD Budget Office & NIH CRISP Database On-line.

Despite major initiatives from the volunteer health agencies and
the extramural community of researchers, FSHD research at the NIH and
funding through the NIH is negligible in muscular dystrophy.
Notwithstanding these positive changes at the NIH as well as major
cooperative initiatives from the volunteer health agencies and the
extramural community of researchers, we realize that major changes are
slow but we are hopeful that this year the NIH will initiate new and
increased funding for FSHD.

NATIONAL INSTITUTES OF HEALTH (NIH) R21, R01, P01 GRANTS FOR FSHD
------------------------------------------------------------------------
Total No. Total No. Total No.
Fiscal year(s) of FSHD P01 of FSHD R01 of FSHD R21
grants grants grants
------------------------------------------------------------------------
1972-1998....................... ........... 3 ...........
1999............................ ........... 1 ...........
2000............................. ........... 1 ...........
2001............................ ........... 1
2002............................. ........... ........... 6
2003............................. ........... ........... 7
------------------------------------------------------------------------
Source: NIH CRISP Database On-line.

Our concern is that the funding increases for facioscpaulohumeral
muscular dystrophy (FSHD) have been abysmal. In the last eighteen
months, four grants directly and specifically pertaining to FSHD were
submitted. One of the four, a small R21 style grant, was funded by the
NIH Committee for Scientific Review (CSR). Despite the Congressional
mandate to accelerate research on FSHD, FSHD grant applications are
still not making it through the peer review process. FSHD grant reviews
have been a constant source of frustration for FSHD researchers
submitting grant applications to the program and review staff of CSR.
Submitting R01, P01, R21 grant applications calls/contracts has been a
frustrating and time consuming endeavor for most researchers in the
FSHD community since it bears little fruit. Since 1994, not a single
R01 or P01 grant application focusing directly on a critical aspect of
FSHD has survived the peer review process at CSR despite the high
quality of researchers and the leading edge of scientific thought and
opportunity involved with FSHD. We choose not to disagree with the peer
review process at NIH nor do we seek to change the peer review
requirement. However, we strongly emphasize that there is a shortage of
reviewers with the required expertise to guarantee the review deserved
by grant submissions in the muscular dystrophy area. Review of FSHD
proposals, with novel genetic phenomena and mechanisms and a leading
edge of scientific thought, are particularly needful of that expertise.
This should be addressed through training, development and mentorship
programs by the NIH. We also emphasize that the NIH must offer ways to
ameliorate the difficulties in this aspect through targeted programs,
training scientists and short and long term outreach efforts to produce
the desired input to its own NIH process.
Congress has been very generous with the NIH. Congress has
repeatedly mandated more effort in muscular dystrophy research in
general and FSHD research in particular. But this is not happening.
We ask Congress to investigate why this is happening and request an
explanation from the NIH accounting for the failure to do better in the
area of FSHD despite repeated Congressional requests. Three R01
research grants funded on FSHD (two of them only peripherally FSHD-
related at best) in four decades is not enough. We implore Congress to
request the NIH to specifically build the research portfolio on FSHD
through all available means, including re-issuing specific calls for
research on FSHD at an accelerated rate, to make up for historical
neglect.
Mr. Chairman, we trust your judgment on the matter before us. We
believe the Committee should explore why muscular dystrophy in general
and FSHD in particular has been left behind in the great rise in
research support at the NIH. Frankly, we are extremely frustrated that
amid a huge increase in funding and strong unambiguous expressions of
Congressional support, the NIH commitment in facioscapulohumeral
muscular dystrophy (FSHD) is so weak. Only you can answer that
question.
Mr. Chairman, again, thank you for providing this opportunity to
testify before your Subcommittee.
______

Prepared Statement of the International Foundation for Functional
Gastrointestinal Disorders

SUMMARY OF FISCAL YEAR 2004 RECOMMENDATIONS

--Provide a 10 percent increase, to $29.8 billion, for fiscal year
2004 to the National Institutes of Health (NIH) budget. Within
NIH, provide proportional increases of 10 percent to the
various institutes and centers, specifically, the National
Institute of Diabetes and Digestive and Kidney Diseases
(NIDDK). We request NIDDK's budget to be increased by 10
percent to $1.7 billion.
--Continue to accelerate funding for extramural clinical and basic
functional gastrointestinal research at NIDDK.
--Provide funding for NIDDK to conduct a prevalence study on and to
increase public and professional awareness of irritable bowel
syndrome (IBS).
--Provide funding for NIDDK to work to develop a strategic plan
setting research goals on IBS and functional bowel diseases and
disorders.
--Provide funding to NIDDK and the National Cancer Institute (NCI)
for more research on the causes of esophageal cancer.
Chairman Specter and members of the Subcommittee, thank you for the
opportunity to present this written statement regarding the importance
of functional gastrointestinal and motility research.
My name is Nancy Norton, and in 1991, I founded the International
Foundation for Functional Gastrointestinal Disorders (IFFGD), in
response to my own experiences as a patient. I'm proud to say that 12
years later my organization serves hundreds of thousands of people in
need each year, providing information and support to patients and
physicians. The largest organization of its kind in the world, IFFGD
works with consumers, patients, physicians, providers and payers to
broaden understanding about fecal incontinence, irritable bowel
syndrome (IBS), gastroesophageal reflux disease (GERD), pediatric
disorders and numerous other gastrointestinal disorders. Additionally,
it has been my personal vision and goal to see a greater investment in
research on functional gastrointestinal and motility disorders.
IFFGD continues to speak about and raise awareness for disorders
and diseases that many people are uncomfortable and embarrassed to talk
about. The prevalence of fecal incontinence and irritable bowel
syndrome, as well as a host of other gastrointestinal disorders
affecting both adults and children, is underestimated in the United
States. These conditions are truly hidden in our society. Not only are
they misunderstood, but the burden of illness and human toll has not
been fully recognized.
Given that we have been diligently working for the past twelve
years it is an exciting time to lead the IFFGD, not only are we serving
more and more people, but we are beginning to be able to privately fund
research. Our first research awards were made on April 6, 2003.
Since its establishment the IFFGD has been dedicated to increasing
awareness of functional gastrointestinal disorders and motility
disorders, among the public, health professionals, and researchers.
Last November, we hosted a conference on fecal and urinary
incontinence. During the first week of April 2003 we also hosted the
Fifth International Symposium on Functional Gastrointestinal Disorders,
which was a great success in bringing scientists from across the world
together to discuss the current science and opportunities on irritable
bowel syndrome and other functional gastrointestinal and motility
disorders. The IFFGD has become known for our professional symposia. We
consistently bring together a unique group of international
multidisciplinary investigators to communicate new knowledge in the
field of gastroenterology.
The majority of the diseases and disorders we address have no cure.
We have yet to understand the pathophysiology of the underlying
conditions. Patients face a life of learning to manage chronic illness
that is accompanied by pain and an unrelenting myriad of
gastrointestinal symptoms. The costs associated with these diseases are
enormous, conservative estimates range between $25-$30 billion
annually. The human toll is not only on the individual but also on the
family. Economic costs spill over into the workplace. In essence these
diseases reflect lost potential for the individual and society. The
IFFGD is a resource and provides hope for hundreds of thousands of
people as they try to regain as normal a life as possible.

FECAL INCONTINENCE

I have had IBS most of my adult life and due to an obstetrical
injury 17 years ago I now live with bowel incontinence. Incontinence in
particular is often thought of as something that affects us when we are
frail and elderly--perhaps something that is part of the aging process.
At least 6.5 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 multiple
sclerosis, diabetes, colon cancer, uterine cancer, and a host of other
diseases, let alone a complication of an episiotomy with vaginal
delivery.
Fecal incontinence can be caused by: 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. 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 try to hide the
problem as long as possible, so they withdraw from friends and family.
The social isolation is unfortunate but may be reduced because
treatment can improve bowel control and make incontinence easier to
manage.

IRRITABLE BOWEL SYNDROME (IBS)

Irritable Bowel Syndrome affects approximately 30 million
Americans. This chronic disease is characterized by a group of
symptoms, which can 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.
Similar to fecal incontinence and depending on severity, IBS can be
emotionally and physically debilitating. Because of persistent bowel
irregularity, individuals who suffer from this disorder may distance
themselves from social events, work, and even may fear leaving their
home.

GASTROESOPHAGEAL REFLUX DISEASE (GERD)

Gastroesophageal reflux disease, or GERD, is a very 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. But sometimes there are no apparent symptoms, and the presence of
GERD is revealed when complications become evident. 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.
Periodic heartburn is a symptom that many people experience. 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.

ESOPHAGEAL CANCER

Approximately 13,000 new cases of esophageal cancer are diagnosed
every year in this country. Although the causes of this cancer are
unknown, it is thought that this cancer may be more prevalent in
individuals who develop Barrett's esophagus. Diagnosis usually occurs
when the disease is in an advanced stage, early screening tools are
currently unavailable.

CHILDHOOD DEFECATION DISORDERS AND DISEASES

Chronic Intestinal Pseudo-Obstruction (CIP).--About 200 new cases
of CIP are diagnosed in American Children each year. Often life
threatening, the future for children severely affected with CIP is
brightened by the evolving promise of cure with intestinal or multi-
organ transplantation.
Hirschsprung's disease.--A serious childhood and sometimes life-
threatening condition that can cause constipation, occurs only once in
every 5,000 American children born each year. Approximately 20 percent
of children with HD will continue to have complications following
surgery. These complications include infection and/or fecal
incontinence.
Functional constipation.--Millions of children (1 in every 10) each
year will be diagnosed with functional constipation. In fact, it is the
chief complaint of 3 percent of pediatric outpatient visits and 10-25
percent of pediatric gastroenterology visits.

FUNCTIONAL GASTROINTESTINAL AND MOTILITY DISORDERS AND THE NATIONAL
INSTITUTES OF HEALTH

The International Foundation for Functional Gastrointestinal
Disorders recommends an increase to $29.8 billion or 10 percent for NIH
overall, and a 10 percent increase for NIDDK, or $1.7 billion. However,
we request that this increase for NIH does not come at the expense of
other Public Health Service agencies.
We urge the subcommittee to provide the necessary funding for the
expansion of the NIDDK's research program on functional
gastrointestinal (FGI) and motility disorders, this increased funding
will allow for the growth of new research, a prevalence study and a
strategic plan on IBS, and increased public and professional awareness
of FGI and motility disorders.
A primary tenant of IFFGD's mission is to ensure that clinical
advancements concerning GI disorders result in improvements in the
quality of life of those affected. By working together, this goal will
be realized and the suffering and pain millions of people face daily
will end.
Thank you.
the international foundation for functional gastrointestinal disorders
The International Foundation for Functional Gastrointestinal
Disorders is a nonprofit education and research organization founded in
1991. IFFGD addresses the issues surrounding life with gastrointestinal
(GI) functional and motility disorders and increases the awareness
about these disorders among the general public, researchers, and the
clinical care community.

______

Prepared Statement of the NephCure Foundation

SUMMARY OF RECOMMENDATIONS FOR FISCAL YEAR 2004

1. A 10 PERCENT INCREASE FOR THE NATIONAL INSTITUTES OF HEALTH AND
THE NATIONAL INSTITUTE OF DIABETES AND DIGESTIVE AND KIDNEY DISEASES
(NIDDK).

2. ENCOURAGE NIDDK TO PROVIDE HIGH PUBLIC VISIBILITY FOR GLOMERULAR
DISEASE AS PART OF THE FORTHCOMING NATIONAL KIDNEY DISEASE EDUCATION
PROGRAM.

3. ENCOURAGE THE NATIONAL CENTER FOR MINORITY HEALTH AND HEALTH
DISPARITIES (NCMHD) TO INITIATE STUDIES INTO THE INCIDENCE/CAUSE OF
FOCAL SEGMENTAL GLOMERULOSCLEROSIS (FSGS) IN THE AFRICAN-AMERICAN
POPULATION.

4. PRIORITIZE, AT NIDDK, A PROGRAM FOR COLLECTION OF TISSUE SAMPLES
AND SCIENTIFIC RESEARCH INTO THE CAUSE OF FSGS, BUILDING ON THE CURRENT
FSGS CLINICAL TRIALS UNDERWAY. THUS, HEIGHTENING THE ATTRACTION OF
GLOMERULAR INJURY RESEARCH FOR TALENTED RESEARCHERS.

Mr. Chairman, and members of the subcommittee, I am pleased to
present testimony on behalf of the NephCure Foundation (NCF), a non-
profit organization driven by a blue-ribbon panel of respected medical
experts and a dedicated band of patients and families working for a
common goal--to save kidneys and lives.
I also include a letter from Melanie Stewart, one of tens of
thousands of young Americans struggling with an insidious disease of
the kidney's filtering mechanism. Now living with the aid of daily
dialysis, Melanie relates just a little of her courageous battle with
focal segmental glomerulosclerosis, or FSGS.

Treatment Trials Beginning, But No Cure in Sight
Mr. Chairman, FSGS is one of a cluster of glomerular diseases that
attack the one million tiny filtering units contained in each human
kidney. These filters are called nephrons and the diseases attack the
portion of the nephron called the glomerulus, scarring and often
destroying the irreplaceable filters. Scientists don't know why
glomerular injury occurs and they are not sure how to stop its
destruction of the kidney.
We are thankful that an NIDDK-funded clinical trial will begin this
year to study the efficacy of the current treatments for FSGS. But
these clinical trials hold out no particular hope for patients such as
my 18-year-old daughter, Christine, who also suffers from FSGS. Chrissy
has been treated with most of the drugs that will be tested in the
upcoming clinical trial. Thus far, none have stopped the proteinuria;
the spilling of protein in the urine that characterizes glomerular
injury.
Christine has experienced the facial swelling and disfigurement
that periodically comes and goes with glomerular disease. She has
suffered the depression and mental ravages of heavy steroid treatments.
Nothing has worked. Last year her kidneys showed scarring and today she
is one of thousands of young people who are in a race against time,
hoping for a treatment that will save her kidneys. The NephCure
Foundation today raises its voice to speak for them all, asking you for
specific actions that will aid our quest to find the cause and the
cure.
First and foremost, we support a 10 percent increase for the
National Institutes of Health and the National Institute of Diabetes
and Digestive and Kidney Diseases (NIDDK).

Too Little Data About a Growing Problem
When glomerular disease strikes, the resultant Nephrotic Syndrome
causes loss of protein in the urine and symptoms such as edema, a
swelling that often appears first in the face. The Antosh family
physician mistook Christine's puffy eyelids as an allergy symptom.
Stories of similar misdiagnosis are common at our Foundation. With
experts projecting a substantial increase in Nephrotic Syndrome in
coming years, there is a clear need to educate pediatricians and family
physicians about glomerular disease and its symptoms.
The NephCure Foundation has numerous education programs underway,
including patient education seminars, the most recent of which is
slated for Seattle in May. News of our activities can be found on our
web site at www.nephcure.org. But our efforts are not enough.
As NIDDK plans a major federal outreach--the National Kidney
Disease Education Program--we seek your support in urging NIDDK to
assure that glomerular disease receives high visibility in this
important program.

Glomerular Disease Strikes Minority Population
Nephrologists tell us that glomerular diseases such as FSGS affect
a disproportionate number of African-Americans and, according to NIDDK,
``the worst prognosis is observed in African-American children.''
NephCure officials have described this situation in a meeting with Dr.
John Ruffin, director of the National Center for Minority Health and
Health Disparities (NCMHD).
As the NCMHD becomes fully operational and plans programs, our
Foundation will continue to work with the Center to encourage the
creation of programs to study the high incidence of glomerular disease
within the African-American population.
We ask the Committee to join with us in requesting that the
National Center for Minority Health and Health Disparities seize the
opportunity to establish research into the phenomenon of glomerular
disease with in the African American community.

More Basic Science is Needed
The current FSGS clinical trials, which will cover an estimated 400
patients over a three year period, are limited, according to the RFA,
to examining the ``impact of immunomodulatory therapy on proteinuria.''
While the trials may lead to safer or more efficient care for children
with FSGS, no one is suggesting that they will bring us closer to
finding the cause and cure. Science has yet to prove that FSGS is an
immune-mediated disease.
Scientists tell us that much more needs to be done in the area of
basic science, beginning with collection of tissue and fluid samples
from a large number of patients on which years of important scientific
research can be founded. NephCure is collaborating with the NIH in a
major way to work for such progress.
The National Institute of Diabetes and Digestive and Kidney
Diseases (NIDDK) will match, dollar-for-dollar, funds raised by
NephCure that will allow researchers to obtain DNA samples from
hundreds of FSGS patients in upcoming clinical trials. The NIDDK will
match up to $300,000 raised by NephCure for a combined total of
$600,000.
We urge you to prioritize a program for a comprehensive study of
such tissue samples and other new programs of scientific research into
the cause of FSGS at NIDDK, actions that will enhance the attraction of
glomerular injury research for talented researchers.
We sincerely believe that the recommendations we make here today,
if implemented, will give hope to the thousands of young people whose
kidneys and lives are threatened by this terrible disease, and give
meaning and honor to the heroic story of Melanie Stewart.
Hello, my name is Melanie Stewart. I'm 15 years old and have been
fighting FSGS since I was seven. Over the last 8 years, I've spent most
of my time in the hospital or hooked up to a dialysis machine, while
trying to keep up my schoolwork. It hasn't been easy.
Three years ago, FSGS destroyed both of my kidneys. On April 21,
1999, my dad gave me one of his kidneys. The year after the transplant
was one of the hardest. Over that time I had Apheresis procedures done
three times a week. As a result of the high doses of immune suppressant
drugs, PTLD, a form of cancer, was found on my head. In November of
2000, I almost died because of a blood infection and a blood clot in my
heart caused by the Apheresis catheter.
In March of 2001, I had my donated kidney removed. I am now on
dialysis again, every day, and am forced to start over.
There are thousands of people, mostly young, like me who would like
a chance for a cure and a normal life.
For everyone, I'm asking for your help to help me meet my goal of
finding a cure.
Thank you for allowing me to share my story and thank you for
listening.

______

Prepared Statement of the Charles R. Drew University of Medicine and
Science

SUMMARY OF RECOMMENDATIONS FOR FISCAL YEAR 2004

--10 PERCENT INCREASE FOR THE NATIONAL INSTITUTES OF HEALTH AS WELL
AS A 10 percent INCREASE FOR ALL INSTITUTES AND CENTERS,
SPECIFICALLY THE NATIONAL CENTER FOR RESEARCH RESOURCES (NCRR),
THE NATIONAL CENTER FOR MINORITY HEALTH AND HEALTH DISPARITIES
(NCMHD), AND THE NATIONAL CANCER INSTITUTE (NCI).
--URGE NCRR, NCMHD, AND NCI TO WORK TOGETHER TO SUPPORT THE
ESTABLISHMENT OF A NATIONAL MINORITY HEALTH COMPREHENSIVE
CANCER CENTER AT A HISTORICALLY MINORITY INSTITUTION.
Mr. Chairman and members of the subcommittee, I am Dr. Charles
Francis, President of Charles R. Drew University of Medicine and
Science. Charles R. Drew University is one of four predominantly
minority medical schools in the country, and the only one located west
of the Mississippi River.
Charles R. Drew University of Medicine and Science is located in
the Watts-section of South Central Los Angeles, and has a mission of
rendering quality medical education to underrepresented minority
students, and, through its affiliation with the University of
California Los Angeles (UCLA) at the co-located King-Drew Medical
Center, Drew provides valuable health care services to the medically
underserved community. Through innovative basic science, clinical, and
health services research programs, Drew University works to address the
health and social issues that strike hardest and deepest among inner
city and minority populations.
The population of this medically underserved community is
predominately African American and Hispanic. Many of these people would
be without health care if not for the services provided by the King-
Drew Medical Center and Charles R. Drew University of Medicine and
Science. This record of service has led Charles R. Drew University (in
partnership with UCLA School of Medicine) to be designated as a Health
Resources and Services Administration Minority Center of Excellence.

A RESPONSE TO HEALTH DISPARITIES

Racial and ethnic disparities in health care have long been
established as a major barrier to successful prevention and treatment
of a multitude of diseases in minority and underserved communities. As
recently articulated in the Institute of Medicine report entitled
``Unequal Treatment: Confronting Racial and Ethnic Disparities in
Health Care'', this problem is not getting better on its own. For
example, African American males develop cancer fifteen percent more
frequently than white males. Similarly, African American women are not
as likely as white women to develop breast cancer, but are much more
likely to die from the disease once it is detected. In fact, according
to the American Cancer Society, those who are poor, lack health
insurance, or otherwise have inadequate access to high-quality cancer
care, typically experience high cancer incidence and mortality rates.
Despite these devastating statistics, we are still not doing enough to
try to combat cancer in our communities.
In response to these findings and the high cancer rate in their own
community, Charles R. Drew University of Medicine and Science proposes
that a Minority Health Comprehensive Cancer Center be built on its
campus.
The Center would specialize in providing not only medical treatment
services for the community, but would also serve as a research
facility, focusing on prevention and the development of new strategies
in the fight against cancer.

SUPPORT FOR THIS INITIATIVE

Mr. Chairman, the support that this subcommittee has given to the
National Institutes of Health (NIH) and its various Institutes and
Centers has and continues to be invaluable to our University and our
community. The dream of a state of the art facility to aid in the fight
against cancer in our underserved community would be impossible without
the resources of NIH.
To help facilitate the establishment of a Minority Health
Comprehensive Cancer Center at Charles R. Drew University of Medicine
and Science, the University is seeking support from the National
Institutes of Health's National Center for Research Resources (NCRR),
the National Center for Minority Health and Health Disparities (NCMHD),
and the National Cancer Institute (NCI).
First, the facility must be constructed. Drew University does meet
the Public Health Service Act eligibility requirement for facilities
construction grants which maintains that the institution ``is located
in a geographic area in which a deficit in health care technology,
services, or research resources may adversely affect health status of
the population of the area in the future, and the applicant is carrying
out activities with respect to protecting the health status of such a
population.'' Therefore, the university is seeking Extramural
Facilities Construction grants through NCRR in the amount of $4 million
per grant cycle for build-out of the first floor of the research
facility, and subsequent build-out of the second floor.
The University is also seeking $8 million from NCMHD for the
research building shell to house the Charles R. Drew University of
Medicine and Science Minority Health Comprehensive Cancer Center.
In addition, the Minority Health Comprehensive Cancer Center cannot
become a reality without programmatic funding. Drew University, in
collaboration with UCLA, is seeking support from NCI in the amount of
$10 million over five years to support the health care and research
activities conducted by the Center.

CONCLUSION

Despite our knowledge about the disparities in diseases and health
care, the ``gap'' continues to widen. Not only are minority and
underserved communities burdened by higher disease rates, they are less
likely to have access to quality care upon diagnosis. As you are aware,
in many minority and underserved communities preventive care and/or
research is completely inaccessible either due to distance or lack of
facilities and expertise.
Even though institutions like Drew are ideally situated (by
location, population, and institutional commitment) for the study of
conditions in which health disparities have been well documented,
research is limited by the lack of appropriate research facilities.
With your help, this cancer center will facilitate translation of
insights gained through research into greater understanding of
disparities in cancer incidence, morbidity and mortality and ultimately
to improved outcomes.
Mr. Chairman, with your support and the financial resources of NIH,
Charles R. Drew University of Medicine and Science can not only be the
nation's first Historically Black College or University (HBCU) to have
a Comprehensive Cancer Center, but also the first minority medical
school in the country to have a comprehensive cancer center focused
exclusively on minority health and health disparities.
We look forward to working with you to lessen the burden of cancer
for all Americans through greater understanding of cancer, its causes,
and its cures.
Mr. Chairman, thank you for the opportunity to present on behalf of
Charles R. Drew University of Medicine and Science.

______

Prepared Statement of First Candle/Sudden Infant Death Syndrome
Alliance

SUMMARY OF FISCAL YEAR 2003 RECOMMENDATIONS

--Continue to fund the third Sudden Infant Death Syndrome (SIDS)
Five-Year Research Plan at NICHD, which focuses on research and
educational opportunities on SIDS Stillbirth.
--Re-examine the third Five-Year Research Plan to determine the
appropriateness of including research planning on stillbirth
and miscarriage as components of the plan.
--Continue to fund the SIDS and Other Infant Death Program Support
Center at the Maternal and Child Health Bureau, within the
Health Resources and Services Administration.
--Fund 3 SIDS death scene protocol demonstration projects through the
Centers for Disease Control and Prevention (CDC) in rural,
urban, and suburban settings to provide a nation-wide protocol
for dealing with SIDS death scenes.
Chairman Specter, thank you for again allowing First Candle/SIDS
Alliance the opportunity to submit testimony to this Subcommittee and
explain issues involving Sudden Infant Death Syndrome (SIDS), the
importance of federal funding for SIDS programs and research, and
exciting changes currently transforming the SIDS Alliance. Mr.
Chairman, we still need your help, commitment, and support to help
solve the mystery that is SIDS and ensure healthy pregnancies and that
every child lives.
Despite the fact that SIDS cases have been documented for years,
organized scientific research into SIDS only began in the mid 1970's.
In the three decades since, scientists are now beginning to make
significant progress in unraveling this enigma of SIDS, which robs
families of their infant children. As an example of this progress, we
now know that in many SIDS related deaths there is an abnormality or
under-development in a region of an infant's brain, which is thought to
control the heart and lung functions. In these cases, this irregularity
may hamper normal respiratory activity. While this may not be the sole
cause of SIDS, it may have contributed to a larger respiratory problem
leading to death when combined with other circumstances.
As a direct result of SIDS research and the ``Back to Sleep''
educational and awareness campaign on infant sleep positioning, SIDS
deaths have been reduced by 42 percent since 1992, leading to the
greatest decline in infant mortality rates in over 20 years.
Despite this exceptional news, our research and educational
campaign is far from finished. There are still more than 2,500 SIDS
deaths in the United States each year and SIDS continues to be the
number one cause of death for children between one month and one year
of age. SIDS is a major component of the United States infant mortality
rate. In spite of these facts, we still do not yet understand the
causes of SIDS nor do we possess any guaranteed method for its
prevention.
However, because of the decreasing rates of SIDS, in 2002, the SIDS
Alliance moved to expand our mission and changed our name to First
Candle/SIDS Alliance. First Candle/SIDS Alliance exists to promote
infant health and survival during the prenatal period through two years
of age. We will concentrate in this arena through advocacy, education,
and research not only in the area of SIDS, but also branching out in
the areas of Stillbirth and Miscarriage.
The primary federal agency responsible for conducting SIDS research
and the ``Back to Sleep'' public awareness campaign is the National
Institute of Child Health and Human Development (NICHD) at the National
Institutes of Health (NIH). In addition to federal funding of SIDS
research, there are other federal agencies involved in the SIDS effort.
Since 1975, the Maternal and Child Health Bureau (MCHB) within the
Health Resources and Services Administration (HRSA) has supported
specific programs for SIDS bereavement services such as family
counseling and for public and professional education about SIDS. The
Centers for Disease Control and Prevention (CDC) has established a
standardized death scene investigation protocol for SIDS incidents.
Additionally an Interagency Panel on SIDS has been established, which
includes: NIH, HRSA, CDC, Indian Health Services (HIS), Food and Drug
Administration (FDA), U.S. Consumer Products Safety Commission,
Department of Defense, Administration for Children and Families, and
the Department of Justice to help coordinate all federally funded SIDS
activities.
First/Candle SIDS Alliance is grateful for the Subcommittee's past
support of SIDS activities, especially the support of NICHD. We urge
you to again provide the additional funding necessary for the third
year of the third Five-Year SIDS Research Plan to ensure that NICHD can
continue to address critical SIDS research initiatives. Specifically
the SIDS Alliance is supporting a funding increase to $29.8 billion or
10 percent for NIH overall, and a 10 percent increase for NICHD to
$1.33 billion. We respectfully ask that the increases for NIH do not
come at the expense of other Public Health Service agencies. Further
research is essential to find the reasons for and means of preventing
the tragedy of SIDS as well as providing research to understand the
causes of Stillbirth and Miscarriage.
First Candle/SIDS Alliance urge the Subcommittee to support SIDS
educational, awareness, and counseling activities that take place at
the MCHB, and the death scene investigation protocol demonstration
projects at the CDC. These programs are a vital companion to the
research conducted at NICHD. Without prevention, awareness, counseling
and standardized investigation procedures, competent scientific
research does not translate into meaningful advances for SIDS victims
and their families.

HIGHLIGHTS OF FEDERALLY FUNDED SIDS ACTIVITIES

National Institute of Child Health and Human Development (NICHD)
Childcare has become increasingly important in the social fabric of
the United States, so have child care centers and homes. To address
this issue the NICHD has initiated the ``Back to Sleep Child Care
Project,'' sending publications and other ``Back to Sleep'' materials
to over 280,000 child care centers and licensed homes throughout the
United States. Response to these mailings has been overwhelming,
resulting in a 20 percent increase in the volume of requests for Back
to Sleep materials. 20 percent of all SIDS deaths occur in a childcare
setting. First Candle/SIDS Alliance and NICHD, as well as other
coalition partners such as the American Academy of Pediatrics (AAP),
have joined in a collaborative initiative launched by MCHB. This
initiative calls attention to this problem and works to further educate
policy makers and day care providers regarding infant sleep positioning
with the goal of further decline in the number of SIDS deaths every
year.
Studies on the risk factors for SIDS among African American and
American Indian populations conducted in collaboration with the CDC and
the Indian Health Service have yielded valuable information for
targeted interventions to reduce infant mortality in these communities.
SIDS among minority populations continues to be a top priority for the
NICHD. Surveys show that the proportion of African Americans placing
their infants to sleep on their stomachs continues to decrease,
however, African Americans are still twice as likely to place infants
on their stomachs as compared to other populations. Discussion groups
are underway in African American communities across the country to
assess the ``Back to Sleep'' campaign message, and to improve message
delivery. In addition, during fiscal year 2001, the NICHD established
new initiatives on health disparities in minority populations. SIDS and
related fetal and infant deaths are part of the initiatives targeted at
eliminating health disparities in infant mortality.
A new component of the ``Back to Sleep'' campaign focusing on
reducing SIDS among African American's was launched in late 1999. The
goal is to develop and implement a community-based initiative. The
National Black Child Development Institute (NBCDI) joined with the
NICHD, the campaign sponsors, and several other organizations in the
outreach initiative. A culturally appropriate resource kit, which
includes a training guide, has been developed, and the first national
training workshops have been held.
The mechanism of SIDS is still unknown; there are no clinical or
biologic tests to identify a newborn at high risk of succumbing to
SIDS; and more work is needed to increase the implementation of ``Back
to Sleep'' among all caregivers and in communities with high rates of
infant death. To address and focus its efforts on these challenges, the
NICHD has developed and is implementing its third SIDS Research Five-
Year Plan. The plan is divided into five parts: Introduction, Etiology/
Pathogenesis, Prognostics and Diagnostics, Prevention, and Health
Disparities. Because of our expanded mission, First Candle/SIDS
Alliance is asking the Subcommittee to direct NICHD to review the third
SIDS five-year plan to investigate the appropriateness and scientific
viability of including Stillbirth and Miscarriage in current Five-Year
Research Plan for SIDS.
Research initiatives in fiscal year 2004 include (1) continued
research on mechanisms of pathogenesis through studies in animal
models, postmortem tissue, and high-risk infants. This includes a
prospective study to define a battery of physiologic and genetic
markers that will predict SIDS and to determine whether SIDS is part of
a larger family of autonomic nervous system disorders; (2) analysis of
epidemiological and physiological data collected during the second five
year research plan to improve our understanding of environmental and
intrinsic risk factors; (3) a community-linked health disparities
initiative to investigate related aspects of mortality from late fetal
life through early childhood; (4) improve risk reduction and efficacy
of ``Back to Sleep'' through continued research, monitoring, and
outreach in at risk communities.

Maternal and Child Health Bureau (MCHB)
Recently, First Candle/SIDS Alliance has entered into a
collaborative effort with MCHB to kickoff the ``Healthy Child Care
America Back to Sleep Campaign''. This initiative builds on the success
of the ``Healthy Child Care America'' and ``Back to Sleep'' campaigns
to unite child care, health, and SIDS prevention partners across the
country to reduce the number of SIDS-related deaths in child care
settings.
The MCHB continues to support a number of SIDS and Other Infant
Death related services and programs, including the following
activities:
--National SIDS Resource Center, a major source of current
information about SIDS.
--Maternal and Child Health Service Block Grant (MCH), which grants
funds to states providing a range of services to SIDS families.
Block grant funds support activities like: contact families
immediately after death, discussion of autopsy results with the
family, and support and counseling through the first year of
bereavement. Unfortunately, in many jurisdictions across the
country, funds for these services have been decreased or
eliminated due to budgetary difficulties.
--Field training and curriculum to health care providers for case
management of families who have experienced an infant death,
and the development of model programs, particularly for the
underserved and minorities. Demonstration grants have been
established and are continuing in four states to target
services for specific populations: California, Massachusetts,
Missouri, and New York.
--National SIDS & Infant Death Program Support Center to address SIDS
service issues at the federal level on an ongoing basis. First
Candle/SIDS Alliance was chosen to run this center, which
opened in 1999, and has experienced notable success. The
support center is working to expand bereavement services to
family members of those you experience stillbirth and
miscarriage.

Centers for Disease Control and Prevention (CDC)
To develop a better statistical figure on SIDS cases, Congress
recommended in 1993 the establishment of a standard death scene
protocol to offset discrepancies on unexplained infant deaths between
states. It was hoped that this protocol would be adopted by states not
only for statistical measure, but to help avoid what can become awkward
and emotionally charged misunderstandings at the death scene. In 1996,
CDC published the protocol, and since that time several states have
adopted the standard. It is First Candle/SIDS's Alliance long term goal
to ensure that all states fully adopt and implement the protocol. To
help realize this goal, First Candle/SIDS Alliance would like Congress
to appropriate funds for CDC to heed Congress' recommendations for the
past several years and implement the demonstration projects that follow
these guidelines in several community settings nationwide. We recommend
a demonstration project in each of the following, a rural community
setting, an urban community setting, and a suburban community setting.
We would also encourage CDC to implement a nationwide survey to measure
how many locales have already implemented the protocol independently
and to analyze the results thus far.
In conclusion, we are all too painfully aware that SIDS has
historically been a mystery, leaving in its wake devastated families
and bewildered physicians. Not only have there been no answers on the
cause of SIDS, but there have been no answers on how to effectively
prevent its occurrence. Today we are beginning to find some of the
answers on cause and prevention, and therefore reduce the risk of SIDS.
Because of the ``unknown'', however, babies are still vulnerable even
when parents and care givers take the cautionary steps to prevent SIDS
deaths. This tragedy will continue if research efforts are stalled or
halted, especially when we are at the point where so much progress has
been made. Now is the time for a re-energized effort against this
tragic syndrome.
On behalf of the thousands of families who have been devastated by
the loss of a baby to SIDS, and the millions of concerned and
frightened parents, we ask for your support, and thank you again for
allowing us to submit this testimony. If you have any questions, please
do not hesitate to contact us.

FIRST CANDLE/SUDDEN INFANT DEATH SYNDROME ALLIANCE

First Candle/SIDS Alliance is an organization of parents and
friends of SIDS victims along with medical, business, and civic groups
who are concerned about the health our this nation's children. The
Alliance is engaged in ongoing efforts to expand its scientific
program, strengthen services for families, and provide public education
and advocacy opportunities. An important goal is to improve community
understanding and elevate SIDS to the level of societal concern
appropriate to one of our nation's major causes of infant mortality.

______

Prepared Statement of the Crohn's and Colitis Foundation of America

SUMMARY OF FISCAL YEAR 2004 RECOMMENDATIONS

--A 10 PERCENT INCREASE FOR THE NATIONAL INSTITUTE OF DIABETES, AND
DIGESTIVE AND KIDNEY DISEASES, AND THE NATIONAL INSTITUTE OF
ALLERGY AND INFECTIOUS DISEASES AND A CORRESPONDING INCREASE
FOR INFLAMMATORY BOWEL DISEASE RESEARCH AT BOTH INSTITUTES.
--$1 MILLION FOR THE NATIONAL INFLAMMATORY BOWEL DISEASE
EPIDEMIOLOGICAL PROGRAM AT THE CENTERS FOR DISEASE CONTROL AND
PREVENTION.
--$25 MILLION FOR CDC's NATIONAL COLORECTAL CANCER SCREENING
AWARENESS PROGRAM.

INTRODUCTION

Mr. Chairman, thank you very much for the opportunity to present
the views of the Crohn's & Colitis Foundation of America (CCFA). I am
Rodger DeRose, President and Chief Executive Officer of CCFA and I am
honored to represent the people of this country who suffer from Crohn's
disease and ulcerative colitis.
Crohn's disease and ulcerative colitis are chronic disorders of the
gastrointestinal tract which represent a leading cause of morbidity
from digestive illness. Because they behave similarly, these disorders
are collectively known as inflammatory bowel disease (IBD). IBD can
cause severe diarrhea, abdominal pain, fever, and rectal bleeding.
Moreover, IBD related complications can include; arthritis,
osteoporosis, anemia, liver disease, and colon cancer. Crohn's disease
and ulcerative colitis are not fatal, but they can be devastating. We
do not know their cause, and we have no cure.
CCFA is a non-profit, voluntary organization dedicated to finding a
cure for Crohn's disease and ulcerative colitis. Throughout its 36-year
history, CCFA has sponsored basic and clinical research of the highest
quality. The Foundation also offers a wide range of educational
programs for patients and healthcare professionals, and provides
support services to assist people in coping with these chronic
intestinal diseases.
We are very grateful Mr. Chairman, for your support of IBD research
and epidemiology programs in the Fiscal Year 2003 Labor-HHS bill.
Furthermore, we applaud the leading role that you played in the
successful effort to double the NIH budget and your recent amendment to
the budget resolution providing for an increase in NIH spending in
fiscal year 2004.

RECOMMENDATIONS FOR FISCAL YEAR 2004

National Institutes of Health
CCFA has developed highly successful research partnerships with the
NIH. We are particularly proud of our longstanding collaborations with
the National Institute of Diabetes and Digestive and Kidney Diseases
(NIDDK) which sponsors the majority of IBD research at NIH, and the
National Institute of Allergy and Infectious Diseases (NIAID).
In 2001, a team of investigators from NIDDK, CCFA, and the private
industry announced that they had identified the first gene for Crohn's
disease. This historic breakthrough opens up exciting new pathways of
research focused on the development of improved therapies for Crohn's
disease patients. The research which led to the discovery of the gene
would not have been possible without the strong support that Congress
has provided to the NIDDK in recent years.
Some of the most promising IBD research supported by the NIH has
focused on translating findings from studies conducted on animal models
to humans with IBD. These animal models have enabled researchers to
form the current hypothesis that Crohn's disease and ulcerative colitis
are caused by a malfunctioning immune system, wherein components of the
patient's immune system overreact to normal intestinal bacteria. We
know that people are susceptible to this malfunction because of their
genetic makeup but further research is necessary to determine which
bacteria are responsible, how these bacteria interact with the
intestine's immune system, and which immune system components are
involved.
Mr. Chairman, IBD patients and their families are pinning their
hopes for a better life on medical advancements made through NIH
sponsored research. For this reason, CCFA strongly supports the goal of
the doubling the NIH budget and recommends a 10 percent increase for
NIDDK, NIAID, and NIH overall in fiscal year 2004. Moreover, CCFA
encourages the subcommittee to increase IBD research funding within
NIDDK and NIAID at the same rate as NIH overall.

CENTERS FOR DISEASE CONTROL AND PREVENTION

IBD Epidemiology Program
CCFA estimates that ``up to one million'' people in the United
States suffer from IBD. Unfortunately, we do not have an exact number;
due to the complicated nature of those diseases, patients may remain
undiagnosed or misdiagnosed for several years. One of CCFA's main
public policy objectives is to establish a nationwide IBD
epidemiological program in partnership with the Centers for Disease
Control and Prevention. This much-needed program will further our
understanding of both the prevalence of IBD in the United States, and
the demographic characteristics of this unique patient population.
The cultivation of patient demographic information is critically
important to our biomedical research efforts given that environmental
factors are believed to play a major role in the development and
progression of IBD. If we are able to generate an accurate analysis of
the geographic makeup of the IBD patient population, it will provide us
with invaluable clues about the potential causes of IBD.
As a result, CCFA entered into a partnership last year with the CDC
to establish an IBD epidemiology program. Specifically, CCFA has funded
a grant that CDC submitted to the Foundation to initiate this important
study. We greatly appreciate your support of this collaboration as
outlined in the Committee's fiscal year 2003 Labor-HHS bill. We are
looking forward to reviewing a report on the progress CDC is making in
this area, as requested by the Committee. Moreover, we are pleased that
the Committee has strongly encouraged CDC to provide financial support
for this study now that it has been initiated with funds from our non-
profit organization.
For fiscal year 2004, we are requesting that the Committee provide
CDC with a specific appropriation of $1 million to continue this
important initiative.

Colorectal Cancer Prevention
Finally, Mr. Chairman, in addition to coping with either Crohn's
disease or ulcerative colitis, many IBD patients are at high risk for
developing colorectal cancer. As you may know, colorectal cancer is the
third most commonly diagnosed cancer for both men and women in the
United States and the second leading cause of cancer-related deaths.
Because people who have suffered from IBD for more than eight years are
susceptible to this disease, CCFA has a long history of actively
promoting the benefits of colorectal cancer screening.
Although colorectal cancer is almost entirely curable when detected
early, studies have shown a tremendous need to: (1) inform the public
about the availability and advisability of screening and (2) educate
healthcare providers about screening guidelines. CDC's National
Colorectal Cancer Roundtable is actively working to address these
challenges by partnering with organizations like CCFA to implement a
national public awareness campaign emphasizing the importance of
screening and early detection. Moreover, CDC's ``Screen for Life''
awareness campaign is actively promoting the importance of colorectal
cancer screening via television, radio and print media. CCFA encourages
the subcommittee to provide CDC with $25 million in fiscal year 2004 to
support its colorectal cancer prevention activities.
Once again, Mr. Chairman, thank you for the opportunity to present
the views of Crohn's and Colitis Foundation of America. We look forward
to continuing to work with you on these important issues.

______

Prepared Statement of the Dystonia Medical Research Foundation

SUMMARY OF FISCAL YEAR 2004 RECOMMENDATIONS

--Provide increased funding for the National Institute of Health at
10 percent for fiscal year 2004. Increase funding for the
National Institute of Neurological Disorders and Stroke
(NINDS), the National Institute of Deafness and other
Communication Disorders (NIDCD), and the National Eye Institute
(NEI) by 10 percent.

Fiscal year 2004 recommendations for NIH

[In billions of dollars]

NIH...............................................................29.800
NINDS............................................................. 1.610
NIDCD............................................................. 0.409
NEI............................................................... 0.700

--Continue to accelerate funding for extramural dystonia research at
NINDS.
--Provide funding for NINDS to conduct an epidemiological study and
to increase public and professional awareness of dystonia.
--Continue to expand NIDCD's intramural and extramural research on
dysphonia.
--Continue to expand NEI's intramural and extramural research on
dystonia.
Chairman Specter, thank you for again allowing me the opportunity
to submit testimony to the Subcommittee on behalf of the Dystonia
Medical Research Foundation (DMRF). I want to take this opportunity to
describe for the Subcommittee how dystonia has affected the lives of
many Americans and to provide for you our recommendations for fiscal
year 2004 federal funding with regards to dystonia research.
My name is Rosalie Lewis, I am currently president of the Dystonia
Medical Research Foundation (DMRF). Dystonia is a neurological disorder
characterized by powerful and painful involuntary muscle spasms that
causes the body to twist, repetitive jerking movements, and sustained
postural deformities. There are several different variations of
dystonia, including: focal dystonias which affect specific parts of the
body, such as the arms, legs, neck, jaw, eyes, vocal cords; and
generalized dystonia, affecting 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 a chronic and progressive movement disorder for
which, at this time, there is no known cure. The Foundation estimates
that some form of dystonia affects about 300,000 people in North
America.
I have a very personal connection with this disorder because I am
the mother of four sons, three of whom suffer from the complications of
dystonia, and a fourth who is a carrier of the DYT1 gene which is
responsible for generalized early onset childhood dystonia. Even though
there is no known cure for dystonia, there are treatments to lessen the
severity of the symptoms of the disease such as oral medications,
botulinum toxin injections, and in some cases surgery. Having increased
access to these medical therapies is becoming an increasing larger
issue for the community as a whole.
In the past few decades, dystonia researchers have made several
exciting scientific advancements and have been able to rapidly turn
laboratory and clinical research into diagnostic examinations and
treatment procedures, directly benefiting those affected. Genetics, in
particular, is opening up a new understanding into the cause and
pathophysiology of the disorder. Thus far, 13 dystonia related genes or
gene loci have been identified. In 1997, the DYT1 gene for childhood
early onset dystonia was identified, and we now have a genetic test
available to confirm diagnosis of this particular type of dystonia.
Most recently, in 2002, the gene for myoclonus dystonia was identified.
However the community is still without a diagnostic test and
misdiagnosis still occurs too frequently.
Deep brain stimulation is a surgical procedure that was originally
developed to treat Parkinson's disease but is now being applied to
severe cases of dystonia. Deep brain stimulation has drastically
improved the lives of dozens of dystonia patients during the past few
years. Individuals who were previously bedridden by muscle spasms and
pain are able to walk without assistance, to speak clearly, to dress
themselves, to get a driver's license, to date, to travel, and to live
the life of an able-bodied person. Deep brain stimulation is currently
used primarily to treat severe cases of generalized dystonia but its
promising role in treating focal dystonias is being explored. Surgical
interventions are a crucial and active area of dystonia research.

RESEARCH, AWARENESS, AND SUPPORT

Now is an exciting time to be involved in dystonia research and
awareness. Researchers are becoming more interested in movement
disorders and dystonia at the National Institutes of Health (NIH), and
research is yielding promising clues for better understanding and
management of this disorder.
One way the Dystonia Medical Research Foundation has advocated for
more research on dystonia, is by funding ``seed'' grants to
researchers. Thus far, the Dystonia Foundation has funded over 370
grants, and 5 fellowships, totaling more than $18 million. Due to our
advocacy there are a growing number of talented researchers dedicated
to understanding the biochemistry of dystonia, genetic causes, new
therapeutics and the necessity of an epidemiology study.
Another primary goal of the Dystonia Foundation is education of
both lay and medical audiences. The Foundation conducts regular medical
workshops and patient symposiums to present, discuss, and disseminate
comprehensive medical and research data on dystonia. In January 2001,
NINDS co-sponsored a genetics and animal models meeting, designed to
involve not only prominent researchers but inviting junior
investigators to participate in the discussions. Additionally, in
October 1996, the NIH was one of our co-sponsors for an international
medical symposium, which featured 60 papers on dystonia and 125
representatives from 24 countries. The Young Investigators Award
Program and the Residency Program are in place to entice emerging
medical professionals into the field of dystonia research and cultivate
future dystonia experts.
Since 1995, over 3,000 educational medical videos have been
distributed to hospitals, medical and nursing schools, and at medical
conventions. In addition to medical and coping publications, we have a
children's video to educate families and increase public awareness of
this devastating disorder in younger populations. Media awareness is
conducted throughout the year, and especially during Dystonia Awareness
Week, observed nationwide from October 14 through 20. Local volunteers
have been successful in securing news stories on dystonia in local
venues as well as national media shows such as Good Morning America,
The Oprah Winfrey Show, and Maury Povich. Through his friendship with
the mother of a dystonia patient, screen star Kirk Cameron has taken an
interest in promoting dystonia awareness, and the Dystonia Foundation
is in the process of investigating the possibility of a public service
announcement and several appearances at fundraising events.
The Dystonia Foundation has over 200 chapters, support groups, and
area contacts across North America. In addition, there are 15
international chairpersons whose mission is to promote awareness,
children's advocacy, development, extension, Internet resources,
leadership, medical education, and symposiums. Furthermore, patient
symposiums are held internationally and regionally to provide the
latest medical and coping information to dystonia patients and others
interested in the disorder. In 2000, we held over eight regional
symposiums reaching approximately 2,000 affected families. Eight more
regional symposiums are scheduled throughout 2003 and 2004.

DYSTONIA AND THE NATIONAL INSTITUTES OF HEALTH

The Dystonia Medical Research Foundation recommends an increase to
$29.8 billion or 10 percent for NIH overall, and a 10 percent increase
for NINDS, NIDCD and NEI or: $1.61 billion, $409 million, and $700
million respectively. Now that the NIH doubling is complete, NIH still
must have the adequate resources to continue the research it has begun
during the period of the doubling. We at DMRF request that this
increase for NIH does not come at the expense of other Public Health
Service agencies. 2002 was a banner year in the field of dystonia
research with the release in August of the NIH Program Announcement:
Studies in the Causes and Mechanisms of Dystonia. This program
announcement is a historic collaboration for research on behalf of the
dystonia community throughout the NIH and it serves as an example of
the success of the NIH doubling of funding to make this possible. If
NIH is not adequately funded then many of the grant proposals
associated with the program announcement could go unfunded hindering
the scientific progress we in the dystonia community have made in the
past few years.
Dystonia is the third most common movement disorder after
Parkinson's Disease and tremor, and effects many times more people than
better known disorders such as Huntington's Disease, muscular dystrophy
and ALS or Lou Gehrig's Disease. We ask that NINDS fund dystonia-
specific extramural research at the same level that it supports
research for other neurological movement disorders.
We also urge the Subcommittee to recommend that NINDS provide the
necessary funding for additional extramural research and a large-scale
dystonia epidemiological study. There is also an imperative need for
NINDS to increase its efforts to educate the public and medical
community about dystonia through co-sponsorship of workshops and
seminars. We also encourage the Subcommittee to support NIDCD in its
efforts to revamp its strategic planning process by implementing a
Strategic Planning Group which will help NIDCD as they: consider
applications for high program priority; develop program announcements
and requests for applications; and develop new research areas in the
Intramural Research Program.
The ultimate goal of the Dystonia Foundation is a cure for
dystonia. Until that goal is realized, we are hungry for knowledge
about the nature of dystonia and for more effective treatments with
fewer side effects. We have amassed many exceptional and diligent
researchers; who are committed to our goal, and our top priority is
funding their very important research. But the Foundation cannot do it
alone. We need federal support though NIH, NINDS, NIDCD and NEI to
continue to fund quality scientific research and eliminate this
debilitating disease.
Combine the thwarting of scientific progress with the decreased
access to therapies and all the progress of the last few years could be
wiped away. We ask that you aggressively support medical research,
specifically for movement disorders and brain research. By doing so,
you are doing a tremendous service for my family and myself and to the
hundreds of thousands of people and families affected by dystonia.
Thank you very much.

THE DYSTONIA MEDICAL RESEARCH FOUNDATION

The Dystonia Medical Research Foundation was founded 25 years ago
and has been a membership-driven organization since 1993. Since its
inception, the goals of the Foundation have remained the same: to
advance research for more effective treatments of dystonia and
ultimately a cure; to promote awareness and education; and support the
needs and well being of affected individuals and their families.

______

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

SUMMARY OF RECOMMENDATIONS FOR FISCAL YEAR 2004

(1) A 10 PERCENT INCREASE FOR THE NATIONAL LIBRARY OF MEDICINE AT
THE NATIONAL INSTITUTES OF HEALTH AND SUPPORT FOR NLM'S URGENT FACILITY
CONSTRUCTION NEEDS.

(2) CONTINUED SUPPORT FOR THE MEDICAL LIBRARY COMMUNITY'S ROLE IN
NLM'S OUTREACH, TELEMEDICINE, AND MEDICAL INFORMATICS PROGRAMS.

Mr. Chairman, thank you for the opportunity to submit testimony on
behalf of the Medical Library Association (MLA) and the Association of
Academic Health Sciences Libraries (AAHSL) regarding the fiscal year
2004 budget for the National Library of Medicine. I am Logan Ludwig,
Associate Dean for Library and Telehealth Services at Loyola University
Strich School of Medicine in Maywood, Illinois.
Established in 1898, MLA is a nonprofit, educational organization
of more than 1,100 institutions and 3,600 individual members in the
health sciences information field, committed to educating health
information professionals, supporting health information research,
promoting access to the world's health sciences information, and
working to ensure that the best health information is available to all.
AAHSL is comprised of the directors of libraries of 142 accredited
U.S. and Canadian medical schools belonging to the Association of
American Medical Colleges. Together, MLA and AAHSL address health
information issues and legislative matters of importance to the medical
community through a joint task force.
Mr. Chairman, the National Library of Medicine, on the campus of
the National Institutes of Health in Bethesda, Maryland, is the world's
largest medical library. The Library collects materials in all areas of
biomedicine and health care, as well as works on biomedical aspects of
technology, the humanities, and the physical, life, and social
sciences. The collections stand at 5.8 million items--books, journals,
technical reports, manuscripts, microfilms, photographs and images.
Housed within the library is one of the world's finest medical history
collections of old and rare medical works. The Library's collection may
be accessed in the reading room or requested on interlibrary loan. NLM
is a national resource for all U.S. health science libraries through a
National Network of Libraries of Medicine. Increasingly, it is becoming
an international resource for world-wide research collaboration.
On behalf of the medical library community, I would like to thank
the subcommittee for its leadership in securing a 12 percent increase
for NLM in fiscal year 2003. With respect to the Library's budget for
the coming fiscal year, I would like to touch briefly on four issues;
(1) the growing demand for NLM's basic services; (2) NLM's outreach and
education services; (3) NLM's telemedicine and informatics activities;
and (4) NLM's facility needs.

THE GROWING DEMAND FOR NLM'S BASIC SERVICES

Mr. Chairman, it is a tribute to NLM that the demand for its
services continues to steadily increase each year. An average of 500
million Internet searches are performed annually on NLM's MEDLINE
database, which provides access to the world's most up-to-date health
care information. MEDLINEplus, NLM's extensive electronic information
resource for the general public, is viewed approximately 200 million
times a year. This activity dwarfs previous usage of NLM's
bibliographic services, whether electronic or print. Moreover,
researchers, scholars, librarians, physicians, healthcare providers
from around the world, and the general public rely heavily on NLM and
its National Network of Libraries of Medicine to deliver health care
information everyday that is necessary to improve the quality of our
nation's healthcare system.
NLM also plays a critical role in maintaining the integrity of the
world's largest collection of medical books and journals. Increasingly,
this current and historical information is in digital form. This has
fundamentally changed how the library operates--how and what it
collects, how it preserves information, and how it disseminates
biomedical knowledge. NLM, as a national library responsible for
preserving the scholarly record of biomedicine, is developing a
strategy for selecting, organizing, and ensuring permanent access to
digital information. Regardless of the format in which the materials
are received, ensuring their availability for future generations
remains the highest priority of the Library.
Mr. Chairman, simply stated, NLM is a national treasure. I can tell
you that without NLM our nation's medical libraries would be unable to
provide the quality information services that our nation's healthcare
providers, educators, researchers and patients have come to expect.
Recognizing the invaluable role that NLM plays in our health care
delivery system, the Medical Library Association and the Association of
Academic Health Sciences Libraries join with the Ad Hoc Group for
Medical Research Funding in recommending a 10 percent increase for NLM
and NIH overall in fiscal year 2004.

OUTREACH AND EDUCATION

NLM's outreach programs are of particular interest to both MLA and
AAHSL. These activities, designed to educate medical librarians, health
care professionals and the general public about NLM's services, are an
essential part of the Library's mission.
The Library has taken a leadership role in promoting educational
outreach aimed at public libraries, secondary schools, senior centers
and other consumer-based settings. NLM's emphasis on outreach to
underserved populations assists the effort to reduce health disparities
among large sections of the American public. We were pleased that the
Committee again last year recognized the need for NLM to coordinate its
outreach activities with the medical library community.

PubMed Central
The medical library community also applauds NLM for its leadership
in establishing PubMed Central, an online repository for life science
articles. Introduced in 2000, PubMed Central was created by NLM's
National Center for Biotechnology Information and evolved from an
electronic publishing concept proposed by former NIH Director Dr.
Harold Varmus. The site houses articles from some 100 journals
including the Proceedings of the National Academy of Sciences and
Molecular Biology of the Cell.
The medical library community believes that health sciences
librarians should continue to play a key role in further development of
PubMed Central and we are pleased that medical librarians are members
of the NLM PubMed Central Advisory Committee. Because of the high level
of expertise health information specialists have in the organization,
collection and dissemination of medical literature, we believe our
community can assist NLM with issues related to copyright, fair use,
and information classification on the PubMed Central site. We look
forward to continuing our collaboration with the Library as this
exciting project continues to evolve this year.

MEDLINEplus
NLM estimates that the public conducts 30 percent of all MEDLINE
searching. MEDLINEplus [http://www.nlm.nih.gov/medlineplus/], a source
of authoritative, full-text health information resources from the NIH
institutes and a variety of non-Federal sources, has grown tremendously
in its coverage of health and its usage by the public. In January 2003,
two million unique users searched more than 600 ``health topics'' that
contain detailed consumer-focused information on various diseases and
health conditions. Recent additions to MEDLINEplus include illustrated
interactive patient tutorials, a daily news feed from the public media
on health-related topics, and the NIHSeniorHealth site [http://
nihseniorhealth.gov/], a collaborative project between NLM and the
National Institute on Aging.

Clinical Trials
Mr. Chairman, I also want to comment on another relatively new
service offered by NLM--its clinical trials database [http://
www.clinicaltrials.gov]. This listing of more than 7,000 federal and
privately funded trials for serious or life-threatening diseases was
launched in February of 2000 and currently logs more than 2 million
page hits per month. The clinical trials database is a free and
invaluable resource to patients and families interested in
participating in cutting edge treatments for serious illnesses. The
medical library community congratulates NLM for its leadership in
creating ClinicalTrials.gov and looks forward to assisting the Library
in advancing this important initiative.
Mr. Chairman, we applaud the success of NLM's outreach initiatives
and look forward to continuing our work with the Library again in
fiscal year 2004 on these important programs.

TELEMEDICINE AND MEDICAL INFORMATICS

Mr. Chairman, telemedicine continues to hold great promise for
dramatically increasing the delivery of health care to underserved
communities across the country and throughout the world. NLM has
sponsored over 50 innovative telemedicine related projects in recent
years, including 21 multi-year projects in various rural and urban
medically underserved communities. These sites serve as models for:
--Evaluating the impact of telemedicine on cost, quality, and access
to health care;
--Assessing various approaches to ensuring the confidentiality of
health data transmitted via electronic networks; and
--Testing emerging health data standards.
It is clear that telemedicine and medical informatics program such
as the Visible Human Project [http://www.nlm.nih.gov/research/visible/
visible__human.html]--male and female data sets consisting of MRI, CT,
and photographic cryosection images totaling 50 gigabytes and licenses
to scientists at more than 1,700 institutions around the world--will
play a major role in the delivery of health care and research in the
21st Century.
We are pleased that NCM has begun a new program to support
informatics research that addresses information management problems
relevant to disaster management. Medical librarians and health
information specialists have an important role to play in supporting
these cutting edge technologies, and we encourage Congress and NLM to
continue their strong support of telemedicine and other medical
informatics initiatives.

NLM'S FACILITY NEEDS

Mr. Chairman, over the past two decades NLM has assumed several new
responsibilities, particularly in the areas of biotechnology, health
services research, high performance computing, and consumer health. As
a result, the Library has had tremendous growth in its basic functions
related to the acquisition, organization, and preservation of an ever-
expanding collection of biomedical literature.
This increase in the volume of biomedical information as well as
expansion of personnel (NLM currently houses over 1,100 people in a
facility built to accommodate 650) has resulted in a serious shortage
of space at the Library. In addition, NLM's National Center for
Biotechnology Information [http://www.ncbi.nlm.nih.gov] builds
sophisticated data management tools for processing and analyzing
enormous amounts of genetic information critical to advancing the Human
Genome Project.
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. The medical library community is pleased that
Congress last year appropriated the necessary architectural and
engineering funds for facility expansion at NLM.
We encourage the subcommittee to continue to provide the resources
necessary to acquire a new facility and to support the Library's health
information programs.
Mr. Chairman, thank you once again for the opportunity to present
the views of the medical library community.

______

Prepared Statement of the American Psychological Society

SUMMARY OF RECOMMENDATIONS

--As a member of the Ad Hoc Group for Medical Research Funding, APS
recommends $30 billion for NIH in fiscal year 2004.
--APS requests Committee support for increased behavioral and social
science research and training 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.
--Committee support is requested for specific behavioral science
activities at a number of individual institutes. This testimony
provides examples to illustrate the exciting and important
behavioral and social science work being supported at NIH.
Mr. Chairman, Members of the Committee: On behalf of our members, I
want to thank the Committee for your leadership in the bipartisan
effort to double NIH budget. As a member of the Ad Hoc Group for
Medical Research Funding, the American Psychological Society recommends
$30 billion for NIH in fiscal year 2004. After the historic doubling of
NIH budget, thanks to the efforts of Congress and both the Clinton and
Bush administrations, the rationale for these aggressive increases
remains as compelling today as it was in fiscal year 1999, the year
that you and your colleagues in Congress embarked on this path. NIH has
experienced a period of unparalleled growth in the past 5 years, and
the progress achieved as a result of research funded by NIH will lead
us into a new era of discovery and innovation.
Within NIH budget, my testimony today focuses on the behavioral and
social science research activities of NIH.

OVERVIEW: BASIC AND APPLIED PSYCHOLOGICAL RESEARCH RELATED TO HEALTH

The effects of behavior on health are indisputable.--Many leading
health conditions--heart disease, lung disease, diabetes, developmental
disabilities, brain injury, AIDS, and so many more--are behavioral in
origin. Consider, for example, the devastating health consequences of
smoking, drinking, taking drugs, engaging in risky sexual behaviors.
None of these conditions can be fully understood without an awareness
of the behavioral and psychological factors involved in causing,
treating and preventing them.
APS members include thousands of scientists who, with NIH support,
conduct basic, applied, and clinical research related to physical and
mental health at our Nation's leading universities and colleges.
Virtually every institute at NIH supports some amount of psychological
science. Examples include: The connections between the brain and
behavior; research into how children grow and develop; management of
debilitating chronic conditions such as diabetes and arthritis as well
as mental disorders; and the behavioral aspects of smoking and drug and
alcohol abuse, so that science may find ways for people to escape
addiction.
The new director of NIH, Dr. Elias Zerhouni, has expressed strong
support for behavioral science at NIH, and sees this research as
critical to our nation's health. ``We are aware of the challenge in
social and behavioral science. It's going to be front and center,'' he
has stated. He went on to add, ``The bill for the nation will be
unbearable in health and social costs without a recognition of the role
of behavior.''
Twenty-four of the 27 institutes at NIH fund behavioral science
research, and seven institutes commit over $100 million to this
enterprise. Six institutes commit over 20 percent of their resources to
behavioral science research. That places these pursuits squarely at the
forefront of the most pressing health issues facing this Congress, this
Administration, and this Nation. We ask 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, and by encouraging NIH to advance a model of health that
includes behavior in deciding its scientific priorities.

BEHAVIORAL SCIENCE RESEARCH TRAINING: A GUARANTEED INVESTMENT

The outcomes of science are unpredictable.--Yet there is one aspect
of science where the time and money invested is guaranteed to pay off:
the training of our future scientists. We know that if we provide
support now for a young investigator, we will have a well-trained,
highly-qualified scientist as a result. This is a serious issue in
behavioral science at NIH, where the demand for behavioral science
investigators at NCI, NIMH, and other institutes outpaces the current
supply of behavioral science researchers. In order to meet the future
needs of research in health and behavior, NIH must have a comprehensive
training strategy in place today, one that focuses on training young
investigators in the core disciplines of behavioral and social science
research as well as in multidisciplinary perspectives.
The National Academy of Sciences is currently conducting its
congressionally authorized study of research personnel needs with
regard to the National Research Service Awards. In recent years, NIH
has chosen to only implement the recommendations of NAS selectively, if
at all. NAS produces unbiased, highly analytical reports, and they
should receive more attention from all of the NIH institutes. This
Committee has expressed interest in this study in the past. We hope
that this committee will follow theses developments closely, and take
an active role in the enforcement of these recommendations.
We ask the Committee to support the development, in consultation
with the relevant scientific community, of a comprehensive training
strategy for behavioral and social science research at NIH. This
strategy should include all training mechanisms, and should be balanced
between interdisciplinary research and traditional core disciplines in
the behavioral sciences.
I would now like to turn my attention to the behavioral science
research that is taking place at the individual institutes.

NATIONAL INSTITUTE OF MENTAL HEALTH (NIMH)

Strengthening Clinical Science.--Under the leadership of its new
director Dr. Thomas Insel, NIMH is working with the Academy of
Psychological Clinical Science to explore the development of training
models for clinical science in psychology. The goal is to establish
training for clinical scientists who will go on to create new ways to
diagnose, measure and treat mental disorders, and new ways to evaluate
how those treatments translate from the lab to the real world. We ask
the Committee to support the efforts of NIMH as the institutes takes
this very complex first step in the on-going fight against mental
illness.
Basic Behavioral Research at NIMH.--NIMH is to be commended for
promoting the transfer of knowledge into application. At the same time,
basic behavioral research at NIMH must continue to receive the same
strong support it traditionally receives there. This is crucial, as
NIMH is a de facto source of basic behavioral knowledge that is tapped
by many other institutes. Until other institutes begin to support
larger amounts of basic behavioral science research connected to their
respective missions, it is essential that NIMH's programs of research
into behavioral phenomena such as cognition, emotion, psychopathology,
perception, development, and others continues to flourish. We ask the
Committee to encourage NIMH's continued efforts to strengthen the ties
between basic and clinical behavioral research, and to encourage NIMH's
basic behavioral science portfolio in order to ensure continued
progress in our understanding of the causes, treatment, and prevention
of mental illness and the promotion of mental health.
Adherence and Behavior Change.--NIMH supports studies of factors
that influence decisions about adopting and adhering to treatment and
prevention interventions, including individual personality or disease-
related factors and type of treatment, as well as factors that may
enhance or interfere with adherence to prevention, treatment, or
rehabilitative regimens. This research is critical to increasing the
effectiveness of vaccines, drug therapies, smoking and substance abuse
cessation and relapse prevention programs, and other advances in public
health treatment and prevention.

NATIONAL INSTITUTE OF GENERAL MEDICAL SCIENCES (NIGMS)

NIGMS is the only National Institute specifically mandated to
support research not targeted to specific diseases or disorders. That
legislative mandate also extends to behavioral science research.
Unfortunately, NIGMS does not now support behavioral science research
or training. This is an enormous oversight, given the wide range of
fundamental behavioral topics with relevance to a variety of diseases
and health conditions. Congress addressed this issue for the past four
years in the reports on the fiscal year 2000, fiscal year 2001, fiscal
year 2002, and fiscal year 2003 appropriations for NIH. Specifically,
this Committee said: ``The Committee is concerned that NIGMS does not
support behavioral science research training. As the only Institute
mandated to support research not targeted to specific diseases or
disorders, there is a range of basic behavioral research and training
that NIGMS could be supporting. The Committee urges NIGMS, in
consultation with the Office of Behavioral and Social Sciences, to
develop a plan for pursuing the most promising research topics in this
area.''
The institute's response in their fiscal year 2003 budget
justification was inadequate. ``The Institute's research training
programs mirror the areas of science that fall within the mission of
the National Institute of General Medical Sciences (NIGMS). Except for
a few fields of inquiry, behavioral studies largely fall outside of the
Institute's research mission, and are instead deemed to be within the
missions of other institutes at the National Institutes of Health. ``
NIGMS is mistaken. Their research mission encompasses ``general or
basic medical sciences and related natural or behavioral sciences
[emphasis added] which have significance for two or more other national
research institutes'' (TITLE 42, CHAPTER 6A, SUBCHAPTER III, Part C,
subpart 11, Sec. 285k)
Basic behavioral research in addiction (significance for NIDA,
NIAAA, NCI and NHLBI), obesity (significance for NIDDK, NHLBI, and
NICHD) and neuroscience (significance for NIMH, NINDS, and NHGRI) just
to name a few, are all within the NIGMS mission. Once again, we ask the
Committee to direct NIGMS to develop a plan for establishing a basic
behavioral science research program at NIGMS.

NATIONAL INSTITUTE ON DRUG ABUSE (NIDA)

NIDA's National Prevention Research Initiative.--NIDA's new
Prevention Research Initiative integrates basic science with prevention
research. NIDA-supported investigators will draw on basic behavioral,
cognitive, developmental, social and neurobiological research to inform
the development of innovative and novel prevention interventions. NIDA
will focus on preventing the initiation of drug abuse by better
understanding basic cognitive processes, such as the decision to use a
drug. This basic research component is just one of three components
(along with establishment of transdisciplinary prevention centers and
community multi-site prevention trials) that NIDA will use to enhance
national prevention efforts. Understanding behavior will not only aid
in the development of prevention strategies, it will also aid in the
development of new therapies for those addicted to drugs.
NIDA Clinical Trials Network (CTN).--To date, the efficacy of new
treatments for drug addiction has been demonstrated primarily in
specialized research settings, with somewhat restricted patient
populations. To address this problem, NIDA has established the National
Drug Abuse Treatment Clinical Trials Network (CTN). The mission of the
CTN is to conduct studies of behavioral, pharmacological, and
integrated behavioral and pharmacological treatment interventions of
therapeutic effect in rigorous, multi-site clinical trials to determine
effectiveness across a broad range of community-based treatment
settings and diversified patient populations; and then transfer the
research results to physicians, providers, and their patients to
improve the quality of drug abuse treatment throughout the country
using science as the vehicle. There are currently 17 networks in place,
up form 5 in 1999. We ask this Committee 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 ON ALCOHOL ABUSE AND ALCOHOLISM (NIAAA)

NIAAA has broadened its behavioral science portfolio in order to
understand the underlying psychological and cognitive processes that
lead people to drink, and the impact of chronic alcohol abuse on those
processes. As one example, NIAAA convened a workshop of national
experts on social identification and alcohol research to examine ways
that group peer pressure and group norms concerning drinking influence
drinking. The Institute also convened a group of experts in cognitive
research to explore the effects of alcohol abuse on memory, decision-
making, cognitive development to begin looking at issues of cognitive
rehabilitation.
Advancing Behavioral Therapies for Alcoholism Behavioral, non-
pharmacological therapies currently are the most widely used method of
treating alcohol dependence and alcohol abuse. To advance the
effectiveness of behavioral therapies, NIAAA is examining approaches to
improving clinicians' abilities to engage and retain adults and
adolescents in treatment. NIAAA plans to expand research on the
mechanisms of action of successful behavioral therapies, behavioral
therapies for alcohol-abusing patients who have psychiatric disorders,
which significantly complicates therapeutic interventions, and
combinations of new medications with behavioral therapies to sustain
recovery. We ask this Committee to increase NIAAA's budget in
proportion to the overall increase at NIH in order to reduce the
health, social and economic burden resulting from alcohol abuse and
addiction.

NATIONAL CANCER INSTITUTE (NCI)

Having already established itself as a leader among NIH Institutes
in many fields of research, NCI has made enormous advances in the
behavioral sciences.
NCI's Behavioral Research Program.--NCI's comprehensive behavioral
science research program ranges from basic behavioral science to
research on the development, testing and dissemination of disease
prevention and health promotion interventions in areas such as tobacco
use, diet, and even sun protection. Focusing on transdisciplinary and
collaborative research, NCI's Behavioral Program has expanded to five
branches, including a basic biobehavioral research branch, a health
communication and informatics research branch, and the tobacco control
research branch. The transdisciplinary research conducted by NCI is an
example of the new path for science, as disciplines are only made
stronger when complimented by others. With every new discovery that
arises, we see more and more that no branch of science is complete if
it stands alone.
Health Communications.--Recognizing the central role of effective
communication in addressing issues of health and behavior, NCI has also
undertaken a major effort to develop science-based communications
strategies for disseminating information and persuasive messages about
cancer prevention and treatment to the public. Researchers are
exploring innovative strategies for communicating cancer information to
diverse populations, looking at various communication approaches such
as message tailoring and framing with application in multiple
communication channels. 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.
Theories Project.--The goal of the Theories Project is to identify
and carry out activities that will help develop improved theories of
health behavior. Its focus is on actions that individuals can take to
prevent cancer and speed its early detection. Among the activities that
may be considered are training in theory development and testing for
health behavior researchers who lack such training; recruiting
scientists with strong theory orientations to cancer behavior research;
development of state-of-the-art summaries of theory-relevant topics
when these are lacking; and better communication of opportunities for
theory-focused research among current types of NCI grants. We ask
Congress to support NCI's behavioral science research and training
initiatives and to encourage other institutes to use these programs as
models.
I would now like to turn to some cross-cutting initiatives in which
behavioral research plays a critical role.
Translational Research in Behavioral Science.--Several institutes
have demonstrated enormous leadership in promoting translational
research in behavioral science, aimed at bringing knowledge from the
laboratory into clinical research and application. In simplest terms,
this is the result Congress was looking for when it chose to double NIH
budget: the results of research being used to treat patients with
complex disorders in an effective and efficient manner. At NIMH, for
example, they will develop research centers that support the transition
of basic behavioral science research to patient-oriented studies
regarding new interventions and delivery of services for patients with
mental disorders. The goal is to develop more effective, theory-based
interventions and service-delivery models for mental disorders through
increased applications of the garnered data. At NIDA, the translational
research branch (TRB) identifies basic research discoveries in the
field of drug abuse research, and related disciplines, that have
potential practical impact in the treatment and prevention of disease
or the development of new research technologies. Once findings with
practical applications are identified, the TRB actively facilitates the
translation of these basic research data into clinical and research
tools, medications and treatments. And at NIAAA, investigators funded
by the institute have been learning a great deal about the neuroscience
and biology of the problem, for example charting the brain activity of
binge-drinking laboratory animals to discover what changes in
neurotransmitter pathways affect the craving and reward systems that
contribute to at-risk drinking behaviors.
It's not possible to highlight all of the worthy behavioral science
research programs at NIH. In addition to those I've discussed here,
many other institutes play a key role in NIH behavioral science
research enterprise. These include the National Institute on Aging, the
National Heart Lung and Blood Institute, the National Institute of
Child Health and Human Development, the National Institute of
Neurological Disorders and Stroke, and within NIH Director's office,
the Office of Behavioral and Social Sciences Research. Behavioral
science is a central part of the mission of each of these, and each
deserves the Committee's support.
Obesity.--Obesity is a health problem all too often overlooked, yet
recently it has begun to receive the attention it is warranted. We are
glad to see Congress take up the issue in such pieces of legislation as
H.R. 716, which is directed at fighting obesity and promoting improved
nutrition and increased physical activity in the United States. As the
legislation notes, behavior will play an important role in this effort.
Motivation, counseling, marketing and communication are all important
tools if we are to create a healthier nation led by healthier children.
If we are to see results, the message that we communicate must be
rooted in science and research. Evidence based research, translated
into practice, will ensure safe and effective messages. The use of
science in promoting behavioral changes should not and cannot be
ignored. It has shown us that obesity leads to increased risk of
diabetes, heart disease, and even cancer.
The National Heart, Lung and Blood Institute concluded that a
significant proportion of coronary heart disease is caused or
exacerbated by behavioral factors, including high-risk behavior. But
preventing obesity could save $50 billion a year in health care costs,
and recommended treatments for over-weight individuals begins with
behavioral programs that include diet, exercise and training in
behavioral techniques. The behavioral and physiological changes that
occur during high-risk periods for weight gain must be clarified. This
information can then be used to design individualized interventions, in
order to prevent future weight gains and obesity. Research in this
field benefits not only NHLBI, but other institutes as well, such as
NICHD, NIDDK, and NCI.
This concludes my testimony. Again, thank you for the opportunity
to discuss NIH appropriations for fiscal year 2004 and specifically,
the importance of behavioral science research in addressing the
Nation's public health concerns. I would be pleased to answer any
questions or provide additional information.

______

Prepared Statement of the Society of General Internal Medicine

The Society of General Internal Medicine (SGIM) is pleased to
present the Senate Labor, Health and Human Services and Education
Subcommittee with testimony regarding fiscal year 2004 appropriations
for key programs within the Department of Health and Human Services.
SGIM is an international association of 3,000 physicians and other
health professionals who combine treating patients with teaching and
conducting research. SGIM is dedicated to improving patient care,
medical education, and research in primary care and general internal
medicine. SGIM believes it is uniquely positioned to recommend
appropriate funding levels to continue the important work of the Title
VII and VIII Health Professions Programs and the Agency for Healthcare
Research and Quality (AHRQ).

TITLE VII AND VIII HEALTH PROFESSIONS PROGRAMS

As healthcare professionals, researchers and teachers, we are
concerned that sufficient, stable funding be directed towards the
important work of the health professions and nursing education programs
under Title VII and VIII of the Public Health Service Act. These
programs help ensure that health care professionals are trained to
provide quality care, represent the diverse makeup of the general
population, and are available to communities across the country,
particularly those in underserved areas.
SGIM recommends a 2004 budget of $550 million for the Title VII and
VIII health professions programs, of which at least $40 million should
be directed to general internal medicine and general pediatrics
training.
By providing support to students, programs, departments, and
institutions, the health professions program improves the
accessibility, quality, and racial and ethnic diversity of the health
care workforce. These programs help combat health professional
shortages in rural and underserved areas by educating and training
primary care providers who are more likely to serve in such areas.
Title VII grants provide the only federal funding dedicated to the
education and training of the primary care workforce. Well-trained
primary care physicians are a necessity to provide care to the
uninsured and underinsured, particularly in underserved areas. Data
proves that one half of primary care providers trained through Title
VII programs go on to work in underserved areas, compared to ten
percent of those not training through a program funded by this cluster.
Within primary care, funding for general internal medicine and
general pediatrics training supports medical student training,
residency training, faculty development, and development of academic
administrative units. Aside from increasing the number of physicians
choosing general internal medicine, these programs have also proven to
increase the diversity and cultural competency of the workforce. Title
VII general internal medicine residency programs graduate two to five
times more minority and disadvantaged students than programs that do
not receive such support.
SGIM is disappointed that the Administration's budget plan for
fiscal year 2004 virtually eliminates the entire Title VII program and
provides no funding for the Title VII primary care cluster, which
includes general internal medicine. The President's plan increases
funding for community health centers and the National Health Service
Corps to meet the health care needs of the uninsured and underinsured.
While these programs are important, the President's budget provides
little to no funding to train the health professionals who could enter
the corps and serve at these health centers. SGIM commends the Senate
for approving the Specter-Harkin amendment to the budget resolution,
which provides further funding for the Health Resources and Services
Administration (HRSA) specifically for the health professions programs.
SGIM urges the subcommittee to not just restore the President's
proposed cuts to these programs, but to increase their funding due to
the vital need for a well-trained health professions workforce.

AGENCY FOR HEALTHCARE RESEARCH AND QUALITY (AHRQ)

SGIM strongly supports AHRQ's mission and work to support, conduct,
and disseminate research that improves access to and outcomes and
quality of health care services. SGIM consequently believes a fiscal
year 2003 budget of at least $390 million is necessary for AHRQ to
fully carry out its congressional mandate to improve health care
quality, including reducing errors in medicine and advancing health
outcomes information.
The agency's health services research complements the biomedical
research of the NIH by helping clinicians, patients, and health care
institutions make choices about what treatments work best, for whom,
when, and at what costs. AHRQ is the only federal agency that
explicitly looks for ways to improve the delivery of health care
services, in terms of increased effectiveness, increased quality,
increased cost-effectiveness, and with fewer errors. The agency's
research on error reduction addresses an important public concern,
saves lives, and saves money by reducing costs of mistreatment and
medical malpractice expenditures. Much of AHRQ's research addresses the
cost-efficiency of new modalities or interventions and the
appropriateness of their application for large patient sub-populations
such as those served by Medicare and Medicaid.
AHRQ supported the development of ``cardiac predictive
instruments,'' which predict patients' probability of having an acute
cardiac ischemia (a heart attack or unstable angina pectoris, that
leads to heart attack) and outcomes (e.g. death or cardiac arrest). An
AHRQ-supported clinical effectiveness trial of the ACI-TIPI diagnostic
predictive instrument built into electrocardiographs reduced
unnecessary hospitalizations the equivalent of 200,000 people per year
in the United States, with an estimated savings of $728 million per
year. An error reduction version of the ACI-TIPI, also built into
electrocardiographs, shows promise to reduce the equivalent of $1.2
billion per year in malpractice costs for missed heart attack
diagnoses. The use of an AHRQ-supported predictive instrument, the
Thrombolytic Predictive Instrument, improved the use of thrombolytic
(``clot-buster'') therapy and angioplasty for heart attacks, especially
for patients more often missed and in community and rural hospitals.
Another example is the finding by an AHRQ Evidence-based Practice
Center that children suffering from uncomplicated acute otitis media
(AOM), a middle ear infection, and treated with amoxicillin fared just
as well as those treated with more expensive antibiotics. This research
represents large cost savings to the Medicaid program since
pediatricians can prescribe the less expensive medication and achieve
the same result.
To the extent that it's budget allows, AHRQ collaborates with other
Department of Health and Human Services (HHS) agencies, particularly
the National Institutes of Health (NIH) and the Centers for Disease
Control and Prevention (CDC). These collaborative efforts are critical
in the translation of the fruits of the NIH biomedical research into
effective clinical practice. The combination of the specific applied
focus of the AHRQ with NIH research remains an opportunity for
increased benefit from greater investment.
The private sector cannot replace the work of AHRQ. The private
sector puts a relatively small amount of financial resources toward
initiatives similar to AHRQ research, focused primarily on products
developed by the specific company. Moreover, the agenda of those
sectors selling health care services and goods is to increase the use
of their product, not to look for the most cost-effective solution. And
while health plans indeed do have motive to improve cost-effectiveness,
because they are in a competitive market with enormous fiscal
constraints, they do not cooperate in making cost-effective high
quality care generally available to the public as AHRQ does.
The President's proposed budget for AHRQ for 2004 would be an eight
percent decrease from the agency's 2003 funding level. It would allow
for no new grants, and would cause current, non-patient safety grants
to be cut by 15 percent. Reductions in the AHRQ funding stream will
result in lost opportunities for research projects currently in the
middle of a two- or three-year grant cycle. Mid-course interruptions
will halt some projects just as these initiatives are about to bear
fruit in the form of improved patient health outcomes and reductions in
healthcare expenditures. Such reductions will also have a chilling
effect on individual, investigator-initiated research, a competitive
process through which applicants that receive modest levels of grant
funding develop initiatives with financial implications far beyond the
original investment. Congress must sustain ample funding for
investigator-initiated research to encourage sufficient numbers of
researchers to enter and remain in this field.
SGIM sincerely appreciates the opportunity to provide testimony to
the subcommittee, and would like to thank you for the subcommittee's
past support of Title VII and AHRQ.

______

Prepared Statement of the Society for Neuroscience

Good morning Mr. Chairman and members of the Subcommittee. I am
pleased to be here today to testify before the subcommittee. I am Dr.
Huda Akil and I serve as the President of the Society for Neuroscience.
Our organization has a membership of over 31,000 basic and clinical
researchers. We are the largest scientific organization in the world
dedicated to the study of the brain, spinal cord and nervous system.
Aside from my work at the Society, I am the Gardner Quarton
Distinguished University Professor of Neuroscience in Psychiatry at the
University of Michigan. I am also the Co-Director of the Mental Health
Research Institute in Ann Arbor. I study the biology of the emotional
circuits in the brain along with the impact of the environment on these
circuits. My work focuses on stress, mood disorders, and substance
abuse.
Psychiatry, neurology and neurosurgery are the better-known medical
specialties that have their basis in neuroscience, but this research
has an impact on numerous other medical specialties. Understanding the
development and function of the brain is essential to understanding the
impact of a wide variety of other diseases and disorders. For example,
there is ample evidence that depression increases the likelihood of
heart disease and that in turn heart disease can trigger severe
depression. Obesity is a major health issue in our country, and the
control of feeding behavior and metabolic activity is controlled by the
brain. Therefore, the science of the brain can have great impact on the
overall mental and physical health of this nation.
We are pleased that Congress included funding in the fiscal year
2003 omnibus spending bill to complete the final phase of doubling for
the National Institutes of Health (NIH). We recognize that the advances
in basic research would not be possible without this subcommittee's
strong commitment to biomedical research. Doubling the NIH budget
provides an excellent foundation to continue progress in understanding
and providing cures for diseases.

NEUROSCIENCE RESEARCH CENTER

The Society for Neuroscience is also pleased that the conference
agreement includes language granting authority for the construction of
the first and second phases of the John E. Porter Neurosciences
Building. The Neuroscience Research Center will house research programs
conducted by intramural neuroscience researchers from nine institutes.
While all disciplines benefit from collaborative research,
neuroscience, in particular, thrives on it. Different types of
neuroscience research are currently conducted at various NIH
institutes. Thus, the Neuroscience Research Center provides a forum for
collaboration amongst leading researchers at different institutes to
work together, and with the extramural research community, to further
neuroscience research discoveries.

FUNDING RECOMMENDATION

We appreciate this subcommittee's commitment to significant budget
increases for the NIH, especially in light of the difficult budget
allocations imposed on the subcommittee.
The Society is concerned that the Administration's request for
fiscal year 2004 funding for NIH may not provide adequate resources.
The fiscal year 2004 budget would provide $27.9 billion for NIH, a net
increase of $549 million, or 2.0 percent, over the fiscal year 2003
request. We are concerned that the progress that has been made in the
years of doubling will cease its momentum. As the Chairman and members
of the committee understand, scientific research builds on previous
discoveries. To maintain this nation's world-renowned excellence, we
must maintain the commitment exemplified in the years of doubling. This
research will help us understand the biological basis of disease and,
in turn, develop strategies to prevent, diagnose, treat, and finally
cure such diseases.
The relatively new threat of bioterrorism has added another
dimension to biomedical research. In addition to curing already
existing conditions, researchers have to plan for the contingency of an
induced plague or influx of disease inducing germs. This not only
exhausts resources, but also affects the nation's mental well-being.
Individuals who already suffer from psychiatric diseases are profoundly
affected by the added stress from the threat of bioterrorism. As
importantly, individuals who are healthy but are vulnerable to stress
can become ill, either physically or psychologically, as a result of
threats to their safety. Understanding how to cope with these
psychosocial factors can be scientifically based and can become part of
our national effort to combat terrorism and its long-term effects.
incidence and economic burden of neurological and psychiatric diseases
Each year, we try to convey the importance of biomedical research
in terms of longer, healthier lives for those who suffer from
debilitating neurological and psychiatric disorders. It is in the
economic costs and burdens that the impact of these diseases is
measurable. For example:
--All Depressive Disorders affect 18.8 million Americans and cost $44
billion per year
--Hearing lost costs the United States $56 billion per year, on the
28 million Americans affected
--Alzheimer's Disease affects 4 million Americans and costs $100
billion a year
--4 million people are affected by stoke, which costs the United
States $30 billion per year
--$32.5 billion per year is spent on the 3 million Americans that
have schizophrenia.
--1.5 million Americans are affected by Parkinson's Disease at a cost
of $15 billion per year
--Multiple Sclerosis affected 350,000 Americans at a cost of $7
billion per year
As you know, the federal government, particularly the National
Institutes of Health, is the nation's leading supporter of biomedical
research. We need only look at recent history to see the progress of
biomedical research. Where a disease like epilepsy or cancer once meant
a death sentence, today we have an arsenal of methods to manage these
disorders.
Recent achievements in neuroscience made through NIH-funded
research demonstrate that our nation's commitment to biomedical
research has been worth the investment. I would like to discuss some of
the research being done in my area of expertise.

RECENT ADVANCES IN UNDERSTANDING AND TREATING MENTAL DISORDERS

My research group works on the brain basis of mood disorders--major
depression, manic-depressive illness (also called Bipolar Disorder),
anxiety, panic, obsessive-compulsive illness and other mood disorders.
These are brain illnesses that affect the patients' mood and shape
their view of themselves and the world around them. For example, a
severely depressed individual can see himself or herself as worthless,
feel a sense of hopelessness and despair and suffer from intense
psychological pain. This illness can be fatal as the suffering leads
many to suicide and devastates entire families, wreaking havoc across
generations. Even for those who survive, the illness can produce
indelible changes in the brain. Repeated episodes of severe depression
can lead to changes in brain structure and function that may be
irreversible, and have been likened to ``scarring''. It is therefore
critical to avoid repeated episodes to minimize either the fatal
consequences or the long-term impact on brain function.
It should be noted that there is a close link between mood
disorders and substance abuse. Many people use drugs because they are
struggling with anxiety or other dark moods, or are unable to deal with
stress. They seek alcohol and other drugs to alleviate these feelings.
In turn the use of drugs, even if first triggered by other causes such
as thrill seeking or peer pressure, can often lead to mood disorders.
Stimulants such as cocaine, or narcotics such as heroin, alter mood.
The body becomes dependent on their presence, and when they are
withdrawn, severe changes in mood occur, sometimes leading to serious
psychiatric consequences. Thus, understanding the brain biology of mood
disorders is relevant across many arenas, including alcoholism and
substance abuse.
Until recently, we thought of mood disorders as a sign of weakness,
a problem that can be remedied by ``toughening up'' or ``looking on the
bright side''. But neuroscience research has taught us that moods are
the results of intricate activity in the brain, and therefore have a
physical basis. Depressed individuals are literally trapped in a
chemical imbalance that disrupts how they feel, think and judge. This
insight has led brain scientists to re-frame the question of mood
disorders very differently, not in terms of strength of will, but in
terms of biological causes and drug treatments. Not only is this a non-
judgemental and more humane approach to human suffering, but it has
spurred significant scientific advances that are helping millions of
people all over the world.
Neuroscientists have worked for many years to elucidate the
chemical mechanisms in the brain that underlie emotions such as anxiety
and whose malfunction may be at the root of depression. For example,
many studies have implicated the transmitter serotonin in the chemical
imbalance of depression. This view has resulted in the development of
drugs like Prozac, a so-called Specific Serotonin Reuptake Inhibitor
(SSRI). Prozac and other SSRI's are now widely used for the treatment
of depression and help a large proportion of patients with the illness.
These drugs also help with a number of other disorders including
anxiety and obsessive-compulsive disorders and chronic pain.
However, some depressed individuals are ``treatment resistant'', in
that they do not respond to SSRI's or other classes of antidepressant
drugs. Our research group has discovered that this treatment resistance
is typically related to a disturbed stress system. The body has a
complex set of brain molecules and blood hormones that help it cope
with stress. Huge demands on this system can have severe consequences
on the brain, including remodeling of the brain in an adverse manner.
We have shown that those individuals that have a highly disrupted
stress system often do not respond to antidepressant treatments.
Therefore, there are numerous pharmaceutical company efforts aimed at
discovering new classes of antidepressant drugs, many of which are
aimed specifically at ``resetting'' the stress system. New
antidepressant drugs that are in various phases of testing include
blockers of the brain stress hormone CRH and of the brain receptor that
recognizes the steroid stress hormones that circulate in the blood and
bathe the entire body (the Glucocorticoids).
In addition, we are exploring exciting research frontiers for
discovering the causes and devising new treatments for mood disorders,
especially the more genetically based bipolar illness. These efforts
take advantage of the results of the Human Genome Project. They aim to
uncover specific genes that are active in the emotional parts of the
brain and may contribute to the cause and the course of mood disorders.
New technologies, including a tool known as a microarrays or ``Gene
Chips'', are helping in this undertaking. A gene chip allows scientists
to examine the activity of tens of thousands of genes at the same time
and determine whether the pattern of activity in a particular brain
region is altered under certain illnesses. Recent work, funded by the
NIMH, as a large collaborative project between my laboratory and
several other laboratories in Michigan, Stanford and the University of
California, is providing exciting new insights on genes whose activity
is altered in the brains of severely depressed individuals, and another
set of genes altered in the brain of bipolar individuals. Thus, this
research is leading us to the identification of patterns of gene
activation that associate with specific mental disorders. More
importantly, this research is generating a host of new ideas on how to
understand the causes and improve the treatment of mental disorders.
These and many other efforts from numerous talented scientists
working both with animals and with humans give us hope that we will
continue to make great strides the huge proportion of Americans that
suffer from a brain disorder at some point in the course of their
lives.

SOMATIC CELL NUCLEAR TRANSFER

I would also like to mention an innovative therapy that offers hope
to the millions of people who are affected by neurological diseases.
Somatic cell nuclear transfer (SCNT), also referred to as therapeutic
cloning, is one of the most promising medical research procedures on
the horizon. SCNT involves removing the nucleus of an egg and replacing
it with the material from the nucleus of a ``somatic cell.'' This could
be a cell from the skin, the heart, or a nerve. The egg is never
fertilized by sperm. The sole purpose of this technology is to develop
treatments for disease. With this research, scientists may find cures
for diseases and disabilities ranging from juvenile diabetes to
Alzheimer's disease.
Ethical scientists would agree that human cloning for the purpose
of reproduction is reprehensible. The Society for Neuroscience supports
a ban on reproductive cloning complete with criminal and civil monetary
penalties. However, we strongly believe that the promise of SCNT is too
compelling to be ignored. Permitting critical therapeutic cloning
research will keep hope alive for millions of Americans with crippling
and life-threatening diseases.

CONCLUSION

We have made great strides. Basic researchers know more today than
scientists twenty years ago could even dream of understanding. Yet
millions still suffer. We are committed to eradicate more diseases and
ease suffering of individuals with these diseases and those who care
for them. With this subcommittee's help, we hope to continue to make
extraordinary inroads to understanding diseases and successfully curing
them
Thank you again, Mr. Chairman, for the opportunity to testify.

______

Prepared Statement of the Humane Society of the United States

On behalf of The Humane Society of the United States (HSUS) and our
more than 7 million supporters nationwide, we appreciate the
opportunity to provide testimony on our top funding priority for the
Labor, Health and Human Services, and Education Subcommittee in fiscal
year 2004.

PAIN AND DISTRESS RESEARCH

An estimated 40 percent of the National Institutes of Health (NIH)
budget--or currently more than $11 billion--is devoted to some aspect
of animal research. At this time, no funding is set aside specifically
for research into alternatives that replace or reduce the use of
vertebrate animals in research or that reduce the amount of pain and
distress to which research animals are subjected. NIH may receive $27.7
billion in fiscal year 2004 if Congress fulfills the President's budget
request. Out of this funding, we seek $2.5 million (.009 percent) for
research and development focused on identifying and alleviating animal
pain and distress. We recommend that this R&D be conducted under the
National Center for Research Resources (NCRR, responsible for NIH
extramural funding). We also urge the Committee to specify in report
language that NCRR should conduct this research in conjunction with, or
``piggy-backed'' onto, ongoing research that already causes pain and
distress. No pain and distress should be inflicted solely for the
purpose of this research, given the volume of existing research (we
estimate a minimum of 20-25 percent of all animal research) that is
believed to involve moderate to significant pain and/or distress.
In 1987, NIH announced a program to award grants for ``research
into methods of research that do not use vertebrate animals, use fewer
vertebrate animals, or produce less pain and distress in vertebrate
animals used in research.'' Many of the 17 program awards made from
1987 to 1989, totaling approximately $2.4 million, involved research on
non-mammalian models, including projects on frogs, mollusks, and
insects. Other awards included mathematical modeling and computer
studies. This program, which was managed out of the Division for
Research Resources (the precursor to NCRR), no longer exists at NIH,
and it has not been replaced by any similar program.
A 2001 survey conducted by an independent polling firm indicates
that concern about animal pain and distress strongly influences public
opinion about animal research in general. Public support for animal
research declines dramatically when pain and distress are involved: 62
percent support animal research when pain and distress are minimal,
only 34 percent when moderate, and an even smaller 21 percent when
animal suffering is severe. Despite this public concern, NIH has not
continued to sponsor R&D exploring how to minimize animal suffering and
distress in the laboratory.
During the past five years, HSUS has been reviewing institutional
policies and practices with respect to pain and distress in animal
research. We have found that research institutions have inconsistent
policies due to the lack of information on this subject, and that
standards vary greatly from one institution to another. Painful
techniques, such as the use of carbon dioxide to euthanize rats and
mice, are widely practiced and approved even though studies indicate
that carbon dioxide exposure for only a few seconds causes acute
distress to humans. The federal standard for determining laboratory
animal pain specifies that, if a procedure causes pain or distress to
humans, it should be assumed to cause pain and distress to animals.
While human experience can and should provide a useful guide in some
cases, there are others in which humans are never subjected to the
conditions facing laboratory animals. Information on pain and distress
that animals themselves actually experience is important. For many
accepted laboratory practices there is no scientific data regarding the
painful or distressing effects on either people or animals.
A lack of data on the recognition, assessment, alleviation, and
prevention of pain and distress in laboratory animals is commonly cited
by scientists as a rationale for either not reporting pain and distress
or not acting to mitigate it. This lack of data is obviously
detrimental to the welfare of animals used in research, but it is also
detrimental to the quality of science produced. Uncontrolled,
undetected, and unalleviated pain, physical distress, or psychological
distress result in alterations in physiologic and behavioral states,
and confound the outcome of scientific research. Ultimately, the lack
of information on pain and distress leads to misinterpretation of
research results that could result in harmful effects in human beings
when pre-clinical animal research results are applied to humans in
clinical trials. It is worth noting that researchers themselves often
comment publicly at scientific meetings about the urgent need for
funding in order to properly understand and mitigate pain and distress
in research animals.
Our nation takes pride in leading the world in biomedical research,
yet we lag behind many other countries in our efforts to minimize pain
and distress in animal subjects. For example, the United Kingdom,
Sweden, Switzerland, Germany, the Netherlands and the European Union
all have committed funds specifically for the ``three R's'' (replacing
the use of animals, reducing their use, and refining research
techniques to minimize animal suffering).
We urge the Committee to make this small investment of $2.5 million
to promote animal welfare and enhance the integrity of scientific
research. We also respectfully request this accompanying committee
report language:

``The Committee provides $2.5 million for the National Center for
Research Resources to support research and development focused on
improving methods for recognizing, assessing, and alleviating pain and
distress in research animals. No pain and distress should be inflicted
solely for the purpose of this initiative, since the investigations can
and should be conducted in conjunction with ongoing research that is
believed to involve pain and distress under Government Principle IV of
Public Health Service Policy, which assumes that procedures that cause
pain and distress in humans may cause pain and distress in animals.''

Again, we appreciate the opportunity to share our views and top
priority for the Labor, Health and Human Services, and Education
Appropriation Act of fiscal year 2004. We hope the Committee will be
able to accommodate this modest request that will benefit animals in
research and the quality of the research. Thank you for your
consideration.

______

Prepared Statement of the National Multiple Sclerosis Society

Mr. Chairman and distinguished members of the Subcommittee, we
appreciate the opportunity to submit written testimony on behalf of the
National Multiple Sclerosis Society. The Society is the world's largest
private voluntary health organization devoted to the concerns of all
those affected by MS. Throughout our 57-year history, we have
maintained a commitment to research to help us better understand MS and
to apply this knowledge to the development of new treatments and
ultimately a cure. The Society awarded its first three research grants
in 1947, and our commitment to research has steadily grown. This year
we will invest $30.1 million in research.
Multiple sclerosis is a chronic, unpredictable and often disabling
disease of the central nervous system. Symptoms range from numbness in
the limbs, to loss of vision, and in some instances partial or total
paralysis. The progress, severity and specific symptoms of MS in any
one person can vary and cannot yet be predicted, but advances in
research and treatment are giving hope to those affected by the
disease.
To this end, basic and clinical research conducted at NIH and
research supported by NIH throughout the country is of critical
importance to all people with chronic illnesses and disabilities--such
as MS. Since MS is considered both a neurological and autoimmune
disease, two NIH institutes are of particular relevance to our
patients: The National Institute of Neurological Disorders and Stroke
(NINDS)--which funds 75 percent of the MS-specific research at NIH--and
the National Institute of Allergy and Infectious Diseases (NIAID)--
which funds about 25 percent.
In this year's testimony, we wish to bring the following issues to
the Subcommittee's attention:
--The Society's gratitude for the large fiscal year 2003 NIH increase
and hope for continued balanced, increased funding for
biomedical research at all NIH institutes in fiscal year 2004
and beyond.
--The cooperation and responsiveness of NINDS to the Society's
inquiries concerning the coding system that tracks grant
expenditures.
--Increased collaborative research efforts between NIH and the
Society.

NIH FUNDING

On behalf of people with MS, the Society wishes to express
gratitude for the Subcommittee's commitment to doubling the NIH budget
from $13 billion in fiscal year 1999 to $27 billion in fiscal year
2003. However, to maintain this current research momentum, the Society
firmly believes NIH needs an 8-10 percent increase in fiscal year 2004
funding. This increase is required to sustain critical biomedical
research at NIH and to keep pace with inflation. With regard to
bioterrorism research, the Society urges the Subcommittee to weigh
carefully the funding allocation at NIH institutes to assure that our
national security needs are met, but to still allow biomedical disease
research at all institutes to grow in fiscal year 2004 and beyond.
The President's fiscal year 2004 budget request, under which NIH
would receive about a 2 percent increase, is of great concern to the
Society. NIH-funded research has led to advances in critical areas of
discovery, such as human genetics, diagnostic testing and more targeted
and effective treatments. If NIH receives a small fiscal year 2004
increase, significant pending and future scientific gains will be
limited and perhaps altogether missed--potentially undermining the
intent of doubling the NIH budget. Furthermore, a 2 percent increase
essentially would constitute a reduction in funding as it would render
NIH unable to keep pace with inflation.
The Society recognizes that new discoveries and breakthroughs could
come from any area of biomedical research and could apply to the
primary concern of our members: ending the devastating effects of MS.
Knowing that a well-funded federal research enterprise is of great
public benefit, we encourage Congress to focus on NIH as a whole, with
balanced consideration given to the two institutes of direct relevance
to people with MS--NINDS and NIAID.

GRANT RECODING PROCESS AT NINDS

In 2000, NINDS changed its procedures for coding and tracking of
grants and consequently, the Society was surprised that reported fiscal
year 2000 expenditures on MS research dropped about 46 percent (to
$40.3 million). The Society is pleased to report to the Subcommittee
that in 2002, the Society worked closely with NINDS leadership to
understand, correct and improve the institute's coding system. As a
result of this effort and after close review, we have determined that
the NINDS actual fiscal year 2002 support of MS-related research was
$65.6 million, a figure that now better represents the institute's
investment in MS. We will continue our efforts to ensure optimal
procedures are used to track the federal investment in MS-related
research at NINDS, NIAID, and NIH-wide.

COLLABORATION WITH NIH

Last year, we raised concerns to the Subcommittee about our
experience with the lead NIH institute in MS research with regard to
joint collaborative research projects in MS. We are pleased this year
to report increased interest in collaborative research and other
activities by NINDS and NIAID.

NINDS

The Society currently is working closely with NINDS on a joint
workshop to foster the development of a collaborative and international
MS genetics network. Titled ``Genetics and Multiple Sclerosis: Future
Prospects,'' this workshop will bring together leaders in the field of
MS genetics along with the Society's senior scientific advisors. This
workshop will provide an opportunity to review the state of the art in
the field and to discuss strategies for small and large-scale studies
utilizing the latest technology and cost-effective approaches to
finding the genes that confer susceptibility to MS.

NIAID

In 2001, the Society entered into a collaborative agreement with
NIAID to research ``Sex-based Differences in the Immune Response.''
Such collaboration extends the reach of the Society's own targeted
research initiative on gender differences in MS by encouraging basic
and clinical investigation of disparities in immune responses between
men and women and provides wider visibility of the problem and
opportunities. Initiated as an effort of the NIAID, other NIH
institutes, including NINDS, came on board to provide co-funding for a
one-time request for applications. Together, our agencies co-funded six
research projects relevant to MS, as well as projects related to other
autoimmune diseases and to the immune function in general.
Collaborative activity leverages the resources of all parties
engaged in the effort. In the current environment of fiscal constraints
and numerous national spending priorities, collaborative research
across public and private sectors and scientific disciplines presents a
significant opportunity to leverage the research investment of all
involved parties. We ask the Subcommittee to encourage continued
collaboration among NIH institutes as well as outside the boundaries of
the federal government, and we look forward to continuing our
collaborative efforts with NIH institutes.
We thank the Subcommittee for this opportunity to comment and
applaud your steadfast commitment to advancing the health and well-
being of all Americans through substantial investment in biomedical
research.

______

Prepared Statement of the American Association of Immunologists

The American Association of Immunologists (AAI), a non-profit
professional association of more than 6,500 research scientists and
physicians dedicated to understanding the immune system--resulting in
the prevention, treatment, and cure of disease--appreciates this
opportunity to express its views on the fiscal year 2004 Budget for the
National Institutes of Health (NIH). Before we do, we would like to
express our deep appreciation to the members of this subcommittee and
to its chairman and ranking member, Senators Arlen Specter and Tom
Harkin, for your extraordinary support for biomedical research and the
NIH. AAI was very proud to present Senators Specter and Harkin with our
2001 Public Service Award, ``in recognition of their outstanding
leadership, achievements, and advocacy on behalf of biomedical research
and the National Institutes of Health.'' We are grateful for your
continuing leadership and unwavering dedication to government sponsored
biomedical research and the scientists this funding supports.

IMMUNOLOGY

The study of immunology spans a wide range of diseases and
conditions which affect the lives of every American. Our scientists use
grants from the NIH, and in particular from the National Institute of
Allergy and Infectious Diseases (NIAID),\1\ to understand the workings
of the immune system. This information allows for delineating the
causes of disease and discovering treatments and potential cures.
Immunologists are currently engaged in many such activities, including:
---------------------------------------------------------------------------
\1\ Many AAI members also receive grants from the National Cancer
Institute (NCI), the National Institute on Aging (NIA), the National
Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS),
the National Heart, Lung, and Blood Institute (NHLBI), the National
Institute of General Medical Sciences (NIGMS), and other NIH Institutes
and Centers.
---------------------------------------------------------------------------
--developing effective vaccines against HIV/AIDS, influenza, and
other infectious and chronic diseases;
--discovering new defenses against emerging and re-emerging bacteria
(such as tuberculosis) and drug resistant bacteria (including
antibiotic-resistance);
--regulating autoimmune diseases such as diabetes, myasthenia gravis,
rheumatoid arthritis, and lupus;
--discovering the causes of cancer and promising new treatments; and
--developing treatments to prevent the rejection of transplanted
organs and bone marrow.
With all of this research ongoing, immunologists have also recently
begun important work on urgently needed biodefense research, much of
which was funded in the fiscal year 2003 appropriations bill. Because
AAI members include the nation's preeminent immunologists, many of our
members are already conducting research that is at the forefront of the
nation's urgently needed vaccine development and related biodefense
research efforts. The work of immunologists will be critical in
understanding both the mechanism of infectious diseases and recovery
from them.
As we discuss this year's budget, we would also like to discuss the
unique role that we believe immunologists are playing in the national
effort to combat bioterrorism.

THE NIH BUDGET IN THE POST ``DOUBLING'' ERA

AAI is immensely grateful to Chairman Specter and Senator Harkin,
and to the members of this subcommittee, for initiating and shepherding
the successful effort to double the budget of the NIH over five years,
an effort which was completed during the fiscal year 2003
appropriations process. We cannot emphasize enough the importance of
this extraordinary commitment to the research enterprise, both in terms
of securing additional research dollars and for the ``shot in the arm''
to biomedical researchers all over this nation. Just as our troops
overseas depend on both financial and emotional support from home to
succeed in their mission, so do those on the ``home front'' who are
fighting a war against illness and disease--whether caused by natural
agents or by man-made agents of bioterror. The recent boost in NIH
funding has put NIH and the scientists it funds on a trajectory for
rapid progress and ultimate success.

GENERAL BIOMEDICAL RESEARCH

AAI strongly believes that future NIH budgets must continue to
recognize the critical importance of biomedical research funding both
as a tool to prevent and treat disease and as an urgent defense against
the threat of bioterrorism. We believe that--to capitalize on the
momentum that has resulted from doubling of the NIH budget--NIH must
now receive increases that are sufficient to support this large
bipartisan investment in biomedical research. In this regard, AAI
recommends a 10 percent increase in funding for NIH for fiscal year
2004. Such an increase--if properly allocated--will allow more quality
research to be funded, leading to more translational opportunities and
swifter clinical application; help attract young Americans to research
careers; and help retain young, promising scientists (who might
otherwise leave academia or government for better rewarded
opportunities with pharmaceutical or biotech companies).
As you know, the President's fiscal year 2004 budget proposes a
budget of $27.893 billion, a 2 percent increase over the fiscal year
2003 budget. According to the Administration, the actual increase in
funding for ``research programs and support'' will be 7.5 percent ``as
a result of converting approximately $1.4 billion from one-time non-
recurring costs in fiscal year 2003 for facilities construction and
anthrax vaccine procurement. . . . [Department of Health and Human
Services Fiscal Year 2004 Budget Summary (``HHS Budget Summary''), page
31] Administration officials concede, however, that with biodefense
research growing at a faster rate, non-biodefense research will
increase only 4.3 percent.\2\ [National Institutes of Health, Summary
of the President's Budget, February 3, 2003 (``NIH Budget summary''),
p.1] AAI is very concerned that this increase is too small to both
support ongoing research and permit funding of a sufficient number of
new and competing continuation grants. In addition, this increase will
not support the continued enhancement of pre- and post-doctoral
stipends (see p. 5).
---------------------------------------------------------------------------
\2\ The President's fiscal year 2004 proposed budget indicates that
the average cost of research project grants will increase in the
aggregate by only 2.7 percent. (NIH Budget summary, p. 5)
---------------------------------------------------------------------------
BIODEFENSE RESEARCH

The Administration proposes a slight decrease in NIH biodefense
funds, requesting $1.6 billion in fiscal year 2004. Once again,
Administration officials consider this $121 million reduction a result
of ``significant one-time, non-recurring biodefense expenses in fiscal
year 2003 . . .,'' resulting in an increase of $875 million in fiscal
year 2004. (HHS Budget summary, p. 32) AAI supports this level of
biodefense funding, and in particular (as described below), strongly
supports the request for 125 FTEs for biodefense research activities.
While the infrastructure funding provided in the 2003 appropriation
was both needed and welcome, it does not provide all of the needed
facilities for biodefense research (see p.3), nor does it provide
funding for the additional security costs mandated by the Patriot Act
both as one time costs and for ongoing security required at facilities
which conduct research on select agents. In addition, this important
research cannot get done without adequate NIH intramural staff to award
the grant funding and to provide necessary administrative and oversight
functions. It is vitally important, therefore, that the NIH
professional staff be increased to oversee the biodefense research and
that they be provided with sufficient administrative and fiscal support
personnel. We urge the Congress to provide NIH with these and any other
resources it needs to ensure the expedited distribution, efficient use,
and sound stewardship of federal biodefense funds.
Project BioShield.--While we have not yet had an opportunity to
review the details of the proposed Project BioShield, we look forward
to working with the Administration and the Congress on this program.
Construction of New High Containment (BSL3/BSL4) Laboratories.--
Work on many select agents as well as other pathogenic bacteria,
viruses, and fungi require biological and physical containment. One of
the limiting factors in the ability of the research community to
perform critical work relating to the cause, treatment, and cure of
these disease-causing organisms is the relative scarcity of physical
laboratories that are equipped to allow a safe working environment for
both the investigator and the community.
BSL4 laboratories provide the highest level of containment. While
there is currently a shortage of BSL4 labs, several new facilities are
coming on line and will certainly ease the cues of experiments to be
performed in the existing BSL4 facilities. There does, however, remain
a need for additional BSL3 facilities that are adequately secured for
use with select agents. These labs, while used for less dangerous
select agents, have many advantages: they can be used for experiments
on many biohazardous agents; they can be accommodated in many different
physical buildings; and their operational costs are much lower than for
BSL4 facilities. AAI supports the construction of additional BSL3
facilities at institutions around the country to allow access of
investigators who have important projects requiring this standard of
protection.
Just as important as the construction of new high containment
laboratories is ensuring adequate training in their use. AAI urges the
Congress to support programs which enable graduate students, post-
doctoral fellows, and senior investigators to obtain proficiency
training to allow them to work in biohazard labs. Such programs could
be in the form of brief training periods or as supplements to existing
training grants.

THE ROLE OF IMMUNOLOGISTS IN THE NATIONAL RESPONSE TO BIOTERRORISM

Because immunologists study the immune system in health and
disease, we have both a special interest and expertise in the nature of
infections. We have a unique ability to study the normal immune
response to the bacteria and viruses which could be used as weapons of
bioterrorism. An important aspect of the normal immune response is
defining the ``targets'' (i.e., antigens or epitopes) the immune system
uses to recognize and destroy invading pathogens. In immunologic terms,
this means defining the chemical nature of the epitopes recognized by
the major defenders of the immune system--T and B lymphocytes. The
mechanisms of defining epitopes are well known, but have not been
applied to some pathogens which could be used as weapons of
bioterrorism; these will need to be defined in the test tube, in animal
models,\3\ and finally, in humans. Once we understand the human immune
response, we will be prepared to develop life-saving therapies and
preventive vaccines. Collaboration between microbiologists, who
understand the biology of infectious agents, and immunologists, who
understand how the immune system recognizes and fights infectious
agents, is critical.
---------------------------------------------------------------------------
\3\ Immunologists depend heavily on the use of animal models in
their research. Without the use of animals, theories about immune
system function and treatments that might cure or prevent disease would
have to be tested first on human subjects, something our society--and
our scientists--would never countenance. Despite the clear necessity
for animal research, people and organizations that oppose such research
are threatening scientists who use animal models. The legal and illegal
methods used by these groups to further an animal-rights/anti-medical
research agenda are diverting precious resources from our work,
threatening the personal safety and security of scientists, and
delaying the progress of important research that is underway.
---------------------------------------------------------------------------
Some exciting work in the area of biodefense is already underway.
Immunologists, working in conjunction with infectious disease
specialists, are using cutting edge technology to ``immunize'' people
against agents of bioterror. Rather than using the traditional ``active
vaccination'' approach, which requires injection of attenuated microbes
or inactivated toxic molecules and a period of some weeks to months
before the individual is protected from the disease and/or infectious
agent, immunologists are working to develop passive antibody therapies
(i.e., developing human monoclonal antibodies that can be used in vivo
to neutralize and remove bioterrorist microbes and their toxic
products) for prevention and treatment of infections or the toxic
effects caused by selected bioterrorism agents. In many instances, this
approach would be far preferable to active vaccination as it has few,
if any, of the potential side effects that can occur as a result of
active vaccination and provides immediate protection that will last for
months. Such a therapy could be used to protect first responders and
others prone to exposure in the event of a bioterrorism incident. This
developing therapy has the potential to be used as protection against
anthrax, plague, botulinum toxins, and smallpox, among others.
Another example of important biodefense work is research being
conducted on vaccinia virus, which is used as the vaccine for smallpox.
Immunologists have demonstrated through mouse models that the immune
response to vaccinia virus is greatly altered when the host has
previously had infections with other, completely unrelated viruses. As
a result, immunologists are now studying whether adult humans who
receive the smallpox vaccine for the first time may respond in
different ways than children, as the adults have had a history of more
infections by other viruses that could account for differences in the
side effects of adult vaccination that are now being seen.

RESEARCH, MANAGEMENT AND SERVICES (RM&S) BUDGET

AAI is very concerned about the Administration's plans for the
Research, Management and Services (RM&S) budget, and in particular, for
the ``outsourcing'' portion of that plan. The significant new funding
appropriated to NIH requires additional administrative staff to ensure
that the money is well and properly spent. While the RM&S budget
supports the management, monitoring, and oversight of intra- and extra-
mural research activities (including ensuring the continuation of NIH's
excellent and highly regarded peer review process), it has not kept
pace with the increasing size and complexity of the NIH budget.
While the President's fiscal year 2003 budget included an overall
increase of 17 percent (with an average 9 percent increase for most
Institutes and Centers and a larger increase for NIAID and NCI), the
President's fiscal year 2004 budget recommends an increase of only 5.3
percent. (NIH Budget summary, p. 9) As a result, only 3 percent of the
NIH budget will be devoted to RM&S, continuing a decline in funding
(from the 4.8 percent that RM&S received in fiscal year 1993) which has
occurred even as the NIH budget--and programs supported by that
budget--increase.
AAI is also very concerned about the Administration's proposal for
``outsourcing.'' While certain jobs within NIH may be appropriate for
such an approach, it should not be applied to program administration
staff, many of whom are highly experienced and have historical
knowledge and understanding of the programs and policies of NIH.
Outsourcing such positions will undoubtedly result in the loss of a
dedicated and capable workforce, reducing efficiency in the long run.
AAI believes that proper stewardship is the best guarantee the
taxpayer and the Congress have that appropriated funds will support the
highest quality research and lead to the most promising results. We
urge Congress to increase the RM&S budget, restrict outsourcing to non-
programmatic activities, and permit streamlined hiring procedures to
assist in the expeditious awarding of grant funds.

SALARY CAP

The President's fiscal year 2004 budget request includes a
provision which was rejected by the Congress for the last two years to
lower the existing salary cap for extramural researchers. As we
understand this year's provision, it again proposes to ``roll back''
current law and result in a 10 percent reduction in salary support for
some extramural researchers. This would cause serious administrative
and budgetary problems within research institutions, medical schools,
and universities that are preparing or have already prepared budgets
based on the higher salary cap previously permitted by the Congress. We
urge this subcommittee and the Congress to reject this provision and to
retain current law.

ATTRACTING BRIGHT STUDENTS TO BIOMEDICAL RESEARCH AND RETAINING YOUNG
RESEARCHERS

AAI has long been concerned about science's ability to attract
bright young students to careers in biomedical research to ensure the
future supply of biomedical researchers. In particular, we have worked
to advance the plight of post-doctoral fellows who are significantly
underpaid and under-compensated for their critical work. We were very
pleased, therefore, when the NIH announced in March of 2001 that it
intended to implement recommendations of the National Academy of
Sciences' Committee on Science, Engineering, and Public Policy
(COSEPUP) regarding the need for better compensation and employment
benefits for post-doctoral fellows. (See NIH NOT-OD-01-027). The final
NIH plan included increasing the stipends for the Ruth L. Kirschstein
National Research Service Awards (NRSA) recipients over a five year
period by 10 percent per year or until entry level post-doctoral
fellows reach $45,000 per year (from its fiscal year 2002 level of
$31,092). During fiscal year 2002 and fiscal year 2003, the NIH did
raise stipends by 10 percent. The President's fiscal year 2004 budget,
however, permits only a 4 percent increase for pre-doctoral fellows
(from the current stipend level of $19,968), and from 4 percent to 1
percent, based on years of experience, for post-doctoral fellows. We do
not believe that this increase, which would result in an annual stipend
of $35,560 for first year post-doctoral fellows (and includes few, if
any, fringe benefits), provides adequate support for post-doctoral
scientists, many of whom are in their thirties, are married, have
children, and are trying to buy homes, save for their children's
college educations, and save for their own retirement.
We strongly urge this subcommittee to enable NIH to proceed with
its plan to increase NRSA post-doctoral stipends and to further explore
ways to provide important employment benefits--including health
insurance, pensions and Social Security, and vacation and sick leave
time--to both NRSAs and the post-doctoral fellows supported by NIH
extramural grants. While we understand that this may result in the
hiring of fewer post-doctoral fellows, we believe that it is essential
to provide a living wage and basic employment benefits if we are to
attract and retain the best and brightest students who often encounter
multiple job opportunities with significantly more attractive
compensation packages. NIH and the National Science Foundation have
both recognized this reality facing the nation's scientific community
and have attempted to address this problem directly--we urge the
Congress to enable NIH to move forward with its post-doctoral stipend
plan.

SCIENTIFIC ADVISORY COMMITTEES

AAI has been concerned about reports we have read in Science and
Nature magazines as well as anecdotal evidence suggesting that various
federal scientific advisory panels have been dismantled or reorganized
in an effort to ensure political compatibility with specific positions
of this Administration. AAI believes strongly that it is in the best
interests of the public, the government which serves them, and the
advancement of science that members of government scientific advisory
panels be selected on the basis of the excellence of their science, and
not on the basis of their political affiliations, voting history, or
religious views. In short, millions of lives--as well as the prudent
use of taxpayer dollars--depend on government officials receiving--and
taking--the very best and most independent scientific advice that is
available. We hope that the members of this subcommittee might address
this concern in report language to reassure the scientific community
that the Federal Government values receiving independent scientific
advice, not based on conformity with specific litmus tests.

CONCLUSION

At this writing, the Senate is just beginning consideration of
fiscal year 2004 appropriations for NIH. We look forward to the hearing
process, to learning more about the plans the Administration and the
Congress have for advancing biomedical research at and through the NIH,
and to commenting on those plans as they unfold. We will continue to
embrace the many familiar research areas that are open to our
scientists and to working with NIH to help educate bench scientists
about the newer urgent scientific needs--and the ever-increasing
scientific opportunities--that lie before us. We hope that the members
and staff of this subcommittee--and the Senate--will look to us as a
resource on any matters involving the immune system, vaccine
development, or biomedical research in general. We appreciate having
this opportunity to express our views.

______

Prepared Statement of the American College of Cardiology

INTRODUCTION

The American College of Cardiology (ACC) is a 29,000-member,
professional medical society and educational institution whose mission
is to foster optimal cardiovascular care and disease prevention through
professional education, promotion of research, and leadership in the
development of standards and guidelines and the formulation of health
policy. The ACC submits for the record this statement in support of
fiscal year 2004 funding for the National Heart, Lung, and Blood
Institute (NHLBI).
Due largely to the medical research and education programs
supported by the NHLBI, many Americans who suffer from or are at risk
for cardiovascular disease now have access to a greater variety of
diagnostic tests, medical treatments, and information about prevention.
Even with these advances, cardiovascular disease continues to claim
almost as many lives each year as the next five leading causes of death
combined. With the aging of the so-called baby boom generation, the
number of people at risk for cardiovascular disease is only likely to
grow, making it critical that recent and future discoveries be
translated into practice as quickly as possible. The ACC urges the
subcommittee to continue its long-standing support for the NHLBI and,
specifically, for its heart-related research.
The advances in the treatment of cardiovascular disease achieved
over the last several decades have saved millions of lives and improved
the quality of life for many who otherwise would not have had access to
the life-saving treatments they desperately needed. But because
cardiovascular disease continues to afflict millions of Americans, and
because researchers are on the brink of exciting new discoveries that
will help prevent and treat cardiovascular disease, it is critical that
the NHLBI be funded at the highest possible level.
In addition, the work of the Agency for Health Care Research and
Quality has emerged as a critical partner of the research community in
working to ensure the effective migration of relevant clinical research
results into practice. AHRQ sponsors and conducts research designed to
provide evidence-based information on health care outcomes--that is,
quality, cost, use and access. The information has the potential to
help health care decisionmakers--patients and clinicians, health system
leaders, purchasers, and policymakers--make more informed decisions and
ultimately to improve the overall quality of health care services.

THE COST OF CARDIOVASCULAR DISEASE

The total cost of cardiovascular disease in the United States in
2003 is estimated to be $351.8 billion. This figure includes direct
costs, such as the cost of physicians, hospitals, nursing home
services, medications, and home health care. Of the $351.8 billion,
$142.5 billion is attributed to the indirect costs of lost productivity
resulting from morbidity and mortality.
Cardiovascular disease claimed 945,836 lives in the United States
in 2000--that is 39.4 percent of all deaths, or one of every 2.5
deaths. More than 2,600 Americans die of cardiovascular disease every
day, an average of one death every 33 seconds. In addition, 150,000
Americans under the age of 65 are killed by cardiovascular disease each
year. Contributing to these staggering numbers is the fact that, people
who have had a heart attack run a risk of sudden death that is four to
six times greater than that of the general population.
For the past five years, Congress has demonstrated its deep
commitment to medical research by completing a five-year plan of
doubling funding for the National Institutes of Health (NIH) by 2003.
The ACC commends this dedication to medical research funding,
especially in light of the constraints placed on the federal budget and
competing funding priorities. The ACC believes that the completion of
the doubling of the NIH budget has been an excellent down payment on a
strong medical research infrastructure. Despite all that has been
accomplished, the federal government should not rest on it laurels. Now
is the time for Congress to demonstrate that medical research truly is
a priority by continuing to increase federal support of the NIH.

TRANSLATING RESEARCH FROM ``BENCH TO BEDSIDE"

The ACC believes that the expansion of large-scale clinical trials
is critical if we are to translate ground-breaking research into useful
practice. Clinical trials can also be an important tool for identifying
early therapeutic strategies and pharmacological agents that have the
potential to reduce health care costs. Many of these trials require
thousands of patients to be studied over several years. In addition to
expanding the number and scope of clinical trials, additional resources
must be dedicated to train the next generation of clinical
``trialists'' in the areas of biostatistics, trial design, outcomes
research, and bioethics.
High blood pressure, also known as hypertension, is a major
contributor to and indication of cardiac diseases. According to recent
estimates, one in four U.S. adults has high blood pressure, but because
there are no symptoms, nearly one-third of these people don't even know
they have it. Compared to the general population, patients with
hypertension are three times more likely to develop coronary heart
disease and six times more likely to develop congestive heart failure.
A very recent clinical trial has shown that relatively inexpensive
traditional diuretics are just as effective as newer medicines like
calcium channel blockers and ACE inhibitors when attempting to prevent
heart attack, stroke, and heart failure.
A recently concluded clinical trial demonstrated that patients who
have normal levels of harmful low-density lipoprotein (LDL)
cholesterol, known as ``bad'' cholesterol, can see significant benefit
from drug treatments that raise the levels of high-density lipoprotein
(HDL) cholesterol, or ``good'' cholesterol. The HDL Atherosclerosis
Treatment Study (HATS) was designed to study the effect of lowering LDL
and raising HDL levels on the progression of atherosclerosis in
coronary disease patients. HATS found that patients who were
administered a combination of the drugs simvastin and niacin not only
had a significant reduction in the progression of atherosclerosis, but
they also experienced a significant reduction in incidences of heart
attacks, strokes, and deaths. This was important work because while the
health benefits of lowering LDL levels are understood and applied in
the medical community, the beneficial effects of raising HDL levels and
improving the balance between LDL and HDL was not previously well
understood.
The NHLBI is also currently funding a clinical trial designed to
test public access to automated external defibrillators (AEDs)--devices
that automatically analyze heart rhythms and deliver an electric
current to the heart of a cardiac arrest victim. Researchers already
know that AEDs save lives. The Public Access to Defibrillation (PAD)
program is designed to measure the life-saving potential and cost
effectiveness of putting AEDs in the hands of trained lay individuals.
For every minute that the heart is not shocked back into rhythm, the
cardiac arrest victim's chances of survival decrease by 10 percent.
About one-fourth of the 300,000 annual deaths from sudden cardiac
arrest occur outside the home in public areas, making it critical that
more people are trained so the time between cardiac arrest and
defibrillation is shortened.
Knowing the critical importance of early defibrillation, the ACC
asks the subcommittee to reaffirm its support for public access to
emergency defibrillation by funding community AED programs at $42.5
million for fiscal year 2004. Continued funding will be used to help
communities buy AEDs and train first responders and the public in their
use.
Almost 62 million Americans suffer from one or more types of
cardiovascular disease. Contrary to society's belief that men are more
likely to suffer from cardiovascular disease than women, 32.1 million
women, compared to 29.7 million men currently suffer from one or more
forms of cardiovascular disease. Women also typically develop
cardiovascular disease later in life than men.
As women age, one of the most important health decisions they face
is whether to use post menopausal hormone therapy. Until recently,
studies have yielded conflicting results about the hormone therapy's
effects on breast cancer, heart disease, and other conditions. Research
being conducted through the Women's Health Initiative (WHI), provides
new important information that women and their physicians should
consider when making that choice. The NIH established the WHI in 1991
in an effort to address the most common causes of death, disability and
impaired quality of life in postmenopausal women. This 15-year, multi-
million dollar endeavor is important to research being done on
cardiovascular disease and women and is one of the largest prevention
studies of its kind in the United States. In summer 2002, WIS halted
its hormone therapy study after it was found that the risks of long-
term estrogen plus progestin therapy outweighed its protective
benefits. The researchers found increased risks of heart attack,
stroke, invasive breast cancer, and blood clots. And although the
increased risks are small, when applied to the entire population of
women on hormone therapy and over several years, the potential public
health impact could be considerable.
If clinical research is to benefit patients, resources must be
available to facilitate the transmission of clinical trial data to the
general medical community. The ACC asks the subcommittee to designate
funds for clinical research training and for the translation of
research into practice, through the NIH and other federal agencies.

FUTURE RESEARCH AND DEVELOPMENT INITIATIVES

With adequate funding, the possibilities of medical research are
endless. Each advance in cardiovascular research opens the door to
other new and exciting initiatives. Increased funding for medical
research through the NHLBI is needed not only so current research
initiatives can continue, but so that the NHLBI can pursue new research
opportunities. The ACC encourages Congress to provide funding for these
and other research initiatives which NHLBI hopes to pursue in fiscal
year 2004:

DNA Research
Because of the size and complexity of the human DNA puzzle,
currently there are very few laboratories which are sufficiently
staffed and equipped to tackle the work of narrowing long sequences of
genetic code down to useable information. Genetic predisposition to
certain diseases can be placed within a certain region of DNA, but
narrowing the focus down to be able to pinpoint the causative gene
requires highly specialized equipment and personnel. The NHLBI plans to
fund a handful of laboratories to pursue the work of accurately
identifying the specific genes that predispose an individual towards
the development of cardiovascular disease. Research of this type has
already proven effective. Last year researchers were able to identify
first in mice and later in humans the gene which associated with the
levels of triglyceride (a type of fat) in a person's blood. This is
important because triglyceride levels are associated with a risk of
coronary heart disease.

Overweight and Obesity Prevention and Control at the Worksite
Nearly two-thirds of the adult U.S. population is overweight or
obese. As a result, more Americans are at risk of developing various
cardiovascular problems ranging from atherosclerosis to total heart
failure. Among its research opportunities for fiscal year 2004, the
NHLBI plans to develop a new program that will support the design and
testing of innovative worksite interventions for preventing and
controlling overweight and obesity in adults. Because of the risks
associated with unhealthy body weight, it is important that the current
approach of appealing to individuals to control their weight is
expended to include the workplace, which is a promising location to
encourage healthy lifestyle changes.

Recovery of Heart Function with Circulatory Assist
The only proven treatment for end-stage heart failure is heart
transplantation, but the waiting list for transplants is long. While
waiting for an appropriate donor heart to be found, a mechanical
circulatory assist device is utilized to stabilize a patient. There is
some some evidence that the ``rest'' that mechanical assistant provides
to the heart may actually enable the heart to recover function. The
NHLBI hopes to initiate a study that will capitalize on this
observation and determine the potential for sustained myocardial
recovery through the use of external circulatory assistance devices,
identify the kinds of patients most likely to reap reparative benefits
from temporary assistance, and investigate collaborative treatment
protocols which will promote cardiac tissue repair.

Mechanisms of HIV-Related Cardiopulmonary and Hemostatic Complications
``Drug cocktails'' and anti-viral therapies have begun to transform
the lives of individuals infected with HIV. HIV-positive individuals
who receive modern treatment have seen greatly lengthened life
expectancies. While these new treatments are exciting, HIV patients are
now beginning to present secondary effects of infection, including
serious cardiopulmonary and hemostatic complications. The NHLBI will
initiate a research initiative aimed at furthering understanding the
relationship between HIV infection and other diseases such as
opportunistic infection of the heart, emphysema, and coagulation
disorders. It is important that health care providers are given the
tools to deal with both the primary effects of HIV infection and also
the secondary complications which are becoming more prevalent.

Cultural Competence Academic Award
Cultural, linguistic, and social differences in populations can
present barriers to effective diagnosis and treatment of cardiovascular
disease. To promote the design of materials specific for cultural or
ethnic groups and their dissemination throughout the medical community,
the Cultural Competence Academic Award will be established as a
medical-training curriculum development initiative.

THE VALUE OF PREVENTION AND EDUCATION

While the ACC stresses the continued need for increased funding for
NHLBI research, new treatments and therapies are not enough to win the
fight against cardiovascular disease. If we are to turn the corner in
our battle, efforts must be strengthened to reduce the incidence of
heart attacks, coronary heart disease, heart failure, and high blood
pressure through increased patient and physician education. We know
hypertension, high cholesterol, obesity, diabetes, smoking, and
physical inactivity are definitively associated with heart disease.
Current education programs funded by the NHLBI include the National
Cholesterol Education Program, the National High Blood Pressure
Education Program, the Obesity Education Initiative, the National Heart
Attack Alert Program, and the Women's Heart Health Initiative. These
programs are designed to make information readily available to
physicians, patients, and their families.

Lipid Reduction
The leading indicator of heart disease is high cholesterol.
Although many people know that high cholesterol is bad, they tend to be
unaware of which levels of cholesterol are considered high or
dangerous. In 2001, the NHLBI released new guidelines redefining
healthy and unhealthy cholesterol levels. As a result of these new
guidelines, the ``Third Report of the National Cholesterol Education
Program Expert Panel on Detection, Evaluation, and Treatment of High
Blood Cholesterol in Adults'' (also know as the Adult Treatment Panel
III [ATP III]) released in spring 2001 calls for more aggressive
cholesterol-lowering treatment and for better identification of those
at high risk of contracting heart disease. To inform people about these
new guidelines, the NIH developed several resources to get the
information out to physicians, including an ``ATP III at-a-Glance''
desk reverence and a Palm-OSR interactive tool. And as a way of
encouraging patients to be more active partners in their care, the NIH
released a new patient booklet titled, ``High Blood Cholesterol--What
You Need to Know,'' a simplified 10-year heart disease risk calculator
for the public, and an updated Web site, ``Live Healthier, Live
Longer,'' that includes all the information in the ATP III study.
Statins, drugs that play a key role in lowering cholesterol, while
gaining popularity, are still underused. It is especially important,
now that the NHLBI has lowered the levels at which cholesterol is
considered high or dangerous, that people know their cholesterol levels
and their options for treatment.

Obesity Prevention
One of the greatest health threats in this country and in the
battle against heart disease is obesity. Over the past 20 years,
obesity rates among adults and children have skyrocketed. Last year,
the U.S. Surgeon General issued a ``call to action'' to prevent and
decrease overweight and obesity. We must heed this call, otherwise we
risk turning back the clock on the gains made in areas such as heart
disease, several forms of cancer, and other chronic health problems. At
the core of the obesity problem is poor diet and physical inactivity,
which are cross-cutting risk factors that contribute significantly to
deaths from heart disease, stroke, and diabetes. This country must
dedicate the resources necessary to encourage more Americans to have a
healthier diet and to be physically active. The ACC encourages the
subcommittee to support a funding level of $65 million in fiscal year
2004 for the Division of Nutrition and Physical Activity, and $125
million to restore the Youth Media Campaign at the Centers for Disease
Control and Prevention.

Promoting Heart-Healthy Lifestyles
In another effort to promote heart-healthy lifestyles in
communities around the country whose residents have higher than normal
mortality rates from coronary heart disease and stroke, the NHLBI has
created and funded twelve Enhanced Dissemination and Utilization
Centers (EDUCs), doubling the number of EDUCs in existence. The EDUCs
are expected to form the foundation of a nationwide network to reduce
the burden of cardiovascular disease by changing the behaviors of
health care providers, patients, and the general public. The EDUCs are
just one element of a larger heart-health agenda that the NHLBI
launched as part of its efforts to meet the federal government's
Healthy People 2010 report goals. Healthy People 2010 are the federal
government's plan for building a healthier nation over the next 10
years. Its two major goals are to end racial and ethnic disparities in
the burden of disease and to increase the years and quality of life for
every American.

AHRQ--Moving Research into Practice
The research and education developments the federal government has
facilitated are remarkable and exciting. However, the best research is
of no value if it never reaches the patient. The Agency for Healthcare
Research and Quality (AHRQ) is charged with ensuring that advances in
medicine become the baseline for medical care. By fulfilling the
mission of placing today's breakthroughs in the hands of physicians
tomorrow, AHRQ injects up-to-the-minute research into day-to-day
medical decisions and treatments. AHRQ has become an increasingly
important partner to both the clinical research community and to the
ACC and other private sector organizations as we work to develop
continuous quality improvement initiatives. In addition to funding
cardiovascular outcomes effectiveness research, AHRQ recently announced
the funding of a coordinated set of projects to test different
mechanisms for accelerating the health system's adoption of research
findings that demonstrate ways to improve quality of care. These
include financial incentives and rewards for providers, and innovative
team-oriented educational programs. AHRQ also funds evidence-based
practices to review the latest scientific evidence and draft summary
reports such as a recent one on Blood Pressure Monitoring. The ACC
urges Congress to support the work of the AHRQ and to provide a funding
increase for AHRQ in fiscal year 2004.

CONCLUSION

Beyond better public awareness and the translation of research into
practice, reducing the number of cardiovascular-related deaths is
greatly dependent on research sponsored by the NHLBI. The ACC hopes the
subcommittee shares its optimism and urgency about the unique
opportunities that our scientists and clinical investigators now have
to achieve their long-standing goal of conquering the nation's number-
one killer. In summary, the ACC encourages the subcommittee to provide
a funding level of at least $3.5 billion for the National Heart, Lung,
and Blood Institute within the National Institutes of Health for fiscal
year 2004. It is a wise investment in the future health of our nation.

______

Prepared Statement of the National Breast Cancer Coalition

INTRODUCTION

Thank you, Mr. Chairman and members of the Subcommittee for your
dedication and leadership in working with the National Breast Cancer
Coalition (NBCC) to help in our fight to eradicate breast cancer.
As you know, the National Breast Cancer Coalition is a grassroots
organization dedicated to ending breast cancer through the power of
action and advocacy. The Coalition's main goals are to increase federal
funding for breast cancer research and collaborate with the scientific
community to design and implement new models of research; improve
access to high quality health care and breast cancer clinical trials
for all women, and; expand the influence of breast cancer advocates in
all aspects of the breast cancer decision making process. Nearly 600
NBCC advocates will be on Capitol Hill on Tuesday, May 6, to lobby
their Senators and Representatives on a legislative agenda that
reflects these goals. NBCC truly believes that with our extraordinary
determination and unbelievable spirit, combined with your continued
support for high quality breast cancer research, this deadly disease
will someday be eradicated.

CONTINUED FUNDING FOR BREAST CANCER RESEARCH IS CRITICAL

The Coalition would like to emphasize the advancements in breast
cancer research that have come about as a result of your longstanding
support for this issue. Developments in the past few years have begun
to offer breast cancer researchers fascinating insights into the
biology of breast cancer and have brought into sharp focus the areas of
research that hold promise and will build on the knowledge we have
gained. We are at a point where we are now able to target genes and
begin to know how to address one woman's breast cancer in a different
way from another woman's. This knowledge is leading us forward in
finding the answers to prevention of breast cancer, as well as how to
detect it earlier, and treat it more effectively. Now is precisely the
time to continue your support for this important research.

THE BREAST CANCER AND ENVIRONMENTAL RESEARCH ACT

NBCC asks for your support for increased appropriations for breast
cancer research at the National Institute of Environmental Health
Sciences (NIEHS). During the 107th Congress, Senators Chafee, Reid,
Hatch and Leahy introduced S. 830, the Breast Cancer and Environmental
Research Act. (Representatives Lowey and Myrick introduced the House
companion bill, H.R. 1723.) This legislation will be reintroduced in
the 108th Congress with the goal of establishing Breast Cancer and
Environmental Research Centers at the National Institute of
Environmental Health Sciences to support research on environmental
factors that may be related to the etiology of breast cancer.
It is generally believed that the environment plays some role in
the development of this disease, but the extent of that role is not yet
understood. NBCC believes that a strategy must be developed and more
research done to determine the impact of the environment on breast
cancer. It is only when we understand what causes this disease that we
will have a better idea of how to prevent it, how to treat it more
effectively, and how to cure it.
Women want to do all they can to reduce their risk of breast cancer
or a recurrence. However, little is known about how the millions of
environmental exposures we encounter each day impact the incidence of
breast cancer. While there have been isolated studies looking at the
suspected environmental links to breast cancer, overall, the issue of
what causes breast cancer and the association between the environment
and breast cancer has been chronically underfunded and understudied.
The Coalition believes the Breast Cancer and Environmental Research
Act is the appropriate strategy to examine this question. Many Members
of Congress from across the political spectrum agree with this approach
as well. NBCC specifically appreciates this Subcommittee's
recommendation in CR 107-84 regarding the need for additional research
in the realm of breast cancer and the environment. We thank the
Subcommittee for taking these important first steps in endorsing the
goals set forth in this legislation. The time is right for the
Committee to move forward in the fight to eradicate this disease by
providing $30 million to fund up to eight breast cancer and
environmental research centers, which would make grants using a peer
review and programmatic review process that involves consumers. NBCC
urges the Committee to use the tremendously successful Department of
Defense (DOD) Peer-Reviewed Breast Cancer Research Program (BCRP) as a
model for the structure of this research program.

ACCOUNTABILITY AT NIH

Finally, NBCC believes the issue of accountability at NIH is an
especially timely one with respect to the completion of doubling the
NIH budget. We would like to see collaboration among consumer
advocates, NIH and Congress, to create mechanisms to ensure a higher
level of accountability for federally funded breast cancer research.
The National Breast Cancer Coalition understands that the level of
funding is meaningless unless the funds are allocated appropriately.
The Coalition believes that the call for increased accountability
should be a collaborative effort, and wants to work with the Committee
and with NIH and NCI. The Programmatic Review Group (PRG), which Dr.
Klausner convened in 1998 to provide an account of NCI's plan to
eradicate breast cancer, was a good beginning; however, a more
comprehensive strategy is necessary.
We know that NIH and NCI are as committed as we are to finding
prevention and cures for this disease. However, there needs to be
outside oversight of NIH to monitor this process. NBCC believes that it
is inappropriate for a government agency to design its own oversight;
rather, the public must design and participate in a process that can
review decisions without bias. The time is right for Congress to
request an independent audit of research funding at NIH--using breast
cancer research funding as a model. The question of whether changes may
be needed in the grant mechanism and research structure at these
Institutes should be explored. This outside evaluation is necessary to
update processes or to uproot outmoded or duplicative efforts that no
longer make sense.
The Coalition also seeks answers to the questions that remain. For
instance, how is breast cancer research funding currently being spent?
Who sets priorities and what criteria are applied? And, how can we, as
consumer advocates, seek to influence how the money is being spent?
NBCC believes that some of the answers to these questions lie in
the model of accountability in the Department of Defense (DOD) Army
Peer-Reviewed Breast Cancer Research Program (BCRP). While the DOD BCRP
is significantly smaller and more focused than NCI and NIH, it has an
effective infrastructure of accountability that serves as a good model
for other research programs to follow.
The DOD Integration Panel has outside members that include
advocates on both levels of peer and programmatic review. Also, the DOD
Breast Cancer Research Program has reported the progress of the program
to the American people during two public meetings called the ``Era of
Hope.'' These meetings have been the only times a federally funded
program reported back to the public in detail not only on the funds
used, but also with regards to the research undertaken, the knowledge
gained from that research and future directions to pursue. These
meetings allowed scientists, consumers and the American public to see
the exceptional progress made in breast cancer research through the DOD
Peer-Reviewed Breast Cancer Research Program.
As we are all aware, these are taxpayer dollars. We owe it to all
of our constituencies to assure them that this investment is spent
wisely. The National Breast Cancer Coalition supports increased
appropriations for breast cancer research so that we can eradicate this
disease as soon as possible, however, it is vital that the public
understand how the funds are being spent. NBCC would like to work with
Members of this Subcommittee on this issue.

CONCLUSION

Chairman Specter, Senator Harkin, and members of the Subcommittee,
thank you again for the incredible investment you have made in helping
us work to eradicate breast cancer. NBCC looks forward to continuing to
work with you to end this disease.

______

Prepared Statement of the National Coalition for Heart and Stroke
Research

My name is Jack Owen Wood. I solicit your support for more
aggressive federal funding for research into prevention and treatment
of the sister diseases, stroke and heart disease. Strokes and heart
attacks are occurring at an alarming rate.
I am representing the National Coalition for Heart and Stroke
Research. The coalition consists of 19 national organizations
representing more than 5 million volunteers and members united in
support for increased funding for heart and stroke research. Members of
the Coalition include:
American Academy of Neurology; American Academy of Physical
Medicine and Rehabilitation; American Association of Neurological
Surgeons; American College of Cardiology; American College of Chest
Physicians; American Heart Association; American Neurological
Association; American Stroke Association; Association of Black
Cardiologists Citizens for Public Action on Blood Pressure and
Cholesterol, Inc.; Compliment; Congress of Neurological Surgeons;
International Society for Cardiovascular Surgery; Mended Hearts, Inc.;
National Stroke Association; North American Society of Pacing and
Electrophysiology; Society of Interventional Radiology; Society of
Vascular Surgeons; and WomenHeart.
I will deal primarily with one man's personal experience with
stroke and its functional and financial costs--my own. I have only the
use of my right arm.
I was born in 1937, raised in Vicksburg, Mississippi, earned an
engineering degree at Mississippi State University and currently reside
in Port Orchard, Washington. I worked for the Boeing Company in
Seattle, am a former Director of the Washington State Energy Office,
served as Director of Cost and Revenue Analysis and as the Forcasting
Manager for a major Northwest Area Natural Gas Utility until May 1,
1995.
On May 1, 1995, at the age of 57, I was stricken and severely
disabled by my stroke. Two years later I experienced a triple bypass
heart operation. You might say I've ``been there and done that'' for
both major cardiovascular diseases. So you see, I am an expert.
Several years ago I was offered an exciting and rewarding volunteer
opportunity. I was asked to lead the ``Jack Wood Stroke Victor Tour''
for the American Heart Association.
The Jack Wood Stroke Victor Tour was a 5-state lobbying tour.
Through it I tried to meet personally with every Northwest
Congressional representative on his or her home turf (in Alaska, Idaho,
Montana, Oregon and Washington). In each meeting I was joined by local
people, stroke survivors and their families and medical professionals.
I told my story and asked them to join the Congressional Heart and
Stroke Coalition and to support increased federal heart and stroke
research funding.
I am proud to say I traveled to 18 communities and met personally
with 28 members of our delegation or their staff. Nearly half of our
congressional delegation is now members of the Congressional Heart and
Stroke Coalition.
One of the most powerful memories for me was the frequency in which
Members of Congress or staff members related their personal experience
with stroke. One member I spoke to lost both parents to stroke. I
suspect many of you have stories too.
I realize your interest is greater than the physical impact of my
stroke. Your concern must include the financial impact, not only to me,
but also on our country from increased health care costs and lost
productivity and its many implications.
I have confronted the difficult and painful task of calculating
that cost to me. Besides being a man whose stroke took his ability to
pick up and play with his grandchildren, his livelihood, and marriage,
I remain a statistician at heart. I couldn't resist calculating and
telling that part of my story. But please remember my story is not
dissimilar to that of many of the 4.7 million stroke survivors in the
United States. Many of whom were stricken in their prime earning years.
Who in a matter of moments, seemingly without warning, are transformed
from a contributor and provider to a receiver and patient.
Allow me to highlight three figures that I feel sum up my data and
should be important to you. I estimate that my stroke at age 57:
--Reduced my earnings before retirement age 65 by over $600,000.
--Subsequently, the cost to the federal government in lost income and
other taxes, early Medicare payments and Social Security
disability payments is over $320,000.
--My HMO spent approximately $150,000 to respond to and treat my
stroke.
--One man, over one million dollars.
About 700,000 Americans will suffer a stroke this year costing this
nation an estimated $51 billion in medical expenses and lost
productivity.
Earlier I described a stroke as occurring seemingly without
warning. All too often as in my case, people either don't know or
ignore the signs of a stroke, even one in progress. When my stroke hit
I denied it. It took me two days after my stroke to acknowledge it and
seek help. Because of research into new treatments, we now have tPA, a
clot-busting drug, which if administered within 3 hours of the onset of
stroke symptoms, can dramatically reduce the damage of clot-based
strokes. Had I recognized and acknowledged my stroke, gone to a
hospital with a neurologist on staff and had there been tPA, the impact
of my stroke most certainly would have been lessened.
What is even more painful to me is that my impending stroke could
have been detected. Unfortunately, we need to create easier and less
expensive diagnostic techniques so that effective diagnostics can be
given routinely as part of regular health exams. And they must be
covered through insurance.
I am not asking for your sympathy. Instead, please think of me as
two of the ghosts in the famous Dickens' story. Please don't
misunderstand, I'm not casting you as Scrooge. See me as both the
ghosts of things past and things yet to be. I too am here to tell you,
the future, which I represent, needs not be. It is largely up to you.
I hope my story and estimate of the cost of my stroke convinces you
that taking on stroke and heart disease through increased research,
leading to better prevention, diagnosis and treatment is fiscally
responsible. The human and financial costs are astronomical.
Thank you for your past support of research. I appreciate the
support of Congress in the past for eliminating restrictions on access
to rehabilitation services essential to those who have experienced a
stroke. Unfortunately, caps on reimbursement will be re-implemented in
July. I urge you to act on this important issue.

______

Prepared Statement of the American Society for Microbiology

The American Society for Microbiology (ASM) strongly recommends
continued strong growth for the National Institutes of Health (NIH) to
sustain and expand on the extraordinary progress in medical research
that has been set in motion during the past 5 years as a result of the
substantial increased funding provided by Congress for the nation's
biomedical research enterprise. The Administration has proposed $27.9
billion for the NIH in its fiscal year 2004 budget request, an increase
of $549 million over fiscal year 2003 funding. The 2 percent increase
is greatly inadequate and will undoubtedly decrease and slow promising
areas of biomedical research. The ASM recommends that Congress approve
a 10 percent increase in the fiscal year 2004 budget for the NIH to
bring the level of funding to $30 billion. A 10 percent increase for
the NIH budget will improve its ability to capitalize on the
substantial achievements of the past 5 years and enhance its ability to
seize scientific opportunities to advance national health and security.
Fortunately, the robust levels of budgetary support for the NIH
over the past 5 years have produced medical and technological advances
that serve public health as well as the defense of the nation and the
world. These significant benefits include discovery of the mechanisms
by which anthrax toxin destroys cells, which will speed development of
anthrax therapies; the finding that available doses of licensed
smallpox vaccine can be ``stretched'' by dilution to provide protection
for more people; collaborative efforts to develop a new and safer
smallpox vaccine; and new anthrax vaccine candidates that will soon
enter clinical trials. NIH has also been responsible for a number of
improved HIV/AIDS treatments, vaccines against pneumococcal disease and
hepatitis A and B, potential vaccines against the West Nile and Ebola
viruses, and genomic sequencing of more than 60 medically important
microbes, including the bacteria that cause tuberculosis. Significant
health challenges remain for the 21st century to find treatments and
preventions for microbial threats worldwide. NIH plays a pivotal role
in research efforts to combat old and new infectious diseases that
undermine health and well being and cost this country more than $120
billion annually. The multiple threats of emerging, re-emerging, and
drug-resistant infections mandate increased biomedical research.
The ASM, representing more than 42,000 members in the
microbiological sciences, is particularly concerned with the threat
from infectious diseases and bioterrorism in the United States and
worldwide. The proposed fiscal year 2004 NIH budget includes $4.3
billion for the National Institute of Allergy and Infectious Diseases
(NIAID), an increase of $354 million over the fiscal year 2003 request.
The NIAID supports research and training on all aspects of infectious
diseases, their causative agents and transmission, host responses to
infection, advanced therapeutics and vaccines, and rapid diagnostic
technologies. The NIAID over the past five years has contributed
greatly to U.S. public health; for example, an impressive reduction in
blood-transfusion transmission of HIV and hepatitis viruses, a 70
percent reduction in AIDS-related deaths since 1995, and the near
eradication of Hemophilus influenzae infections in children.

BIODEFENSE RESEARCH

The nation looks to the NIH and to the NIAID for safe and effective
countermeasures against biological agents to defend against
bioterrorist attacks. This threat presents urgent challenges and new
responsibilities for the biomedical community and heightens the
importance of NIAID supported research on the rapid diagnosis,
prevention and treatment of potential agents of bioterrorism. The ASM
supports the fiscal year 2004 NIH budget request of $1.6 billion for
biodefense research resources. The NIAID has a strategic plan and
research agenda for potential agents of bioterrorism, which has been
developed in collaboration with experts in the scientific community.
The plan builds on NIAID funded biomedical research programs that hold
promise in the defense against bioterrorism and against naturally
occurring deadly infectious diseases. The NIAID is mounting an historic
initiative to bring the full capability of science to bear on advances
in knowledge and products to counter biological pathogens. NIAID
expertise used with great success against conventional disease
outbreaks will significantly enhance the effort to combat bioterrorism,
and vice versa. This response to bioterrorism will require a long-term
dedication of financial resources and scientific talents.
In his recent State of the Union address, President Bush proposed
implementing a new initiative against biological warfare, Project
Bioshield. This comprehensive plan calls for a more rapid development
of state-of-the-art drugs and vaccines to target biothreat agents.
Project Bioshield is intended to nurture cooperation among NIAID
researchers, medical experts, and private industry to form a more
focused counterterrorism defense. The Secretary of Homeland Security
and the Secretary of Health and Human Services will collaborate to
identify the most critical research needs. The Director of NIAID will
have increased authority and flexibility to award grants for the
research and development of high-priority defenses such as next-
generation smallpox vaccines.
Although the NIAID has always worked to protect Americans against
infectious diseases, current global and domestic affairs have forced
the Institute to reevaluate and refocus its considerable expertise. Its
efforts against biothreat agents have been and will continue to be
rooted in solid scientific evidence acquired through basic research.
But the expedited translation of basic research findings into
practical-use interventions has become more central to NIAID's mission.
NIAID investigators will approach potential agents of bioterrorism with
new, more efficient strategies, such as the development of broader-
spectrum therapeutics and vaccines. More productive cooperations with
biotechnology and pharmaceutical companies likewise are expected to
streamline the development of countermeasures. The NIAID plan against
bioterrorism comprises two complementary components: basic research on
the biology of potential microbial agents and the mechanisms of host
response to infections, and applied research for the development of new
or improved diagnostics, vaccines, and therapeutics.
Biodefense research is the first priority for the program increases
within the proposed fiscal year 2004 budget. The NIAID is supporting
more than 50 initiatives in biodefense research. In fiscal year 2004,
it expects to add 17 new and expanded initiatives, including the
acquisition and storage of standardized reagents and other materials
related to the study of Category A, B, and C priority pathogens, for
eventual use by investigators and laboratories engaged in biodefense
research. Also in fiscal year 2004 NIAID will refocus on current
immunology and genetics programs that might provide information useful
against biothreat agents. This includes the Pathogen Functional
Genomics Resource Center and a to-be-established Cooperative Centers
for Translational Research on Human Immunology. Other planned fiscal
year 2004 initiatives include developing novel therapeutic strategies
for blocking the effects of the botulinum toxin.

INFECTIOUS DISEASE RESEARCH

Bioterrorism threats should not diminish the NIH/NIAID mission to
detect, prevent and control infectious diseases. Globally, infectious
diseases are the leading cause of death, killing an estimated 14.9
million per year. In the United States infectious diseases cause
millions of illnesses and cost the economy billions of dollars, despite
our relatively high public health standards. We cannot be complacent
about infectious diseases because of the persistence or re-emergence of
old diseases and the emergence of new ones such as hantavirus, West
Nile virus, which has spread to 39 states infecting thousands of
people, Hepatitis C virus (HCV), which has infected almost 4 million
people in the United States and about 9,000 people die annually from
HCV, and Severe Acute Respiratory Syndrome (SARS), an atypical
pneumonia of unknown etiology that has caused approximately 60 known
deaths to date. There also is growing evidence that infectious agents
cause or contribute to many chronic diseases and cancers. Antimicrobial
resistance represents a major threat to increased mortality and
morbidity from untreatable disease and the risk from the spread of
drug-resistant pathogens.
Infectious diseases represent a global risk for nations and
individuals. There is greater risk that Americans overseas will become
exposed to serious infectious diseases like SARS, and international
travel can serve as a mode of disease transmission. The NIAID has a
long-standing commitment to stop the principal international killers
like HIV/AIDS, tuberculosis, and malaria. The heaviest medical and
economic burdens from these diseases exist outside the United States,
but they endanger this country as well. Of the estimated 40 million
HIV-infected persons worldwide, over 70 percent live in sub-Saharan
Africa. Yet the United States has its own challenges: The annual number
of new cases is not declining and perhaps one-third of those living
with HIV/AIDS are unaware of their infection. The NIAID has in place a
global research plan against these infections that includes significant
research funding inside and outside the United States and the creation
of strong alliances with foreign and international health
organizations. This funding continues to produce promising candidate
vaccines for prevention and therapeutic intervention, as well as
breakthroughs in understanding HIV biology and host immune responses.
The Administration recognizes the strategic importance of halting the
HIV pandemic, evidenced in its fiscal year 2004 budget request to fund
the Emergency Plan for AIDS Relief, a five-year, $15 billion initiative
that triples international HIV/AIDS funding.
Tuberculosis and malaria have been health disasters for centuries
of human history. The emergence of antimicrobial-resistant strains of
these pathogens, aided by increased global travel and trade, have made
it difficult to stop these diseases. Among the world's populations,
16.2 million currently have active tuberculosis while malaria strikes
an estimated 300 to 500 million new victims each year. If governments
do not learn how to better control tuberculosis, by 2020 an additional
1 billion persons worldwide will be newly infected and 35 million of
those will die, according to World Health Organization estimates. The
NIAID estimates that 10 to 15 million in the United States currently
have tuberculosis, and the Institute invests heavily in research on
diagnostics, therapeutics and vaccines. Using a newly developed strain
of tuberculosis bacterium that carries a mutated gene, NIH-funded
scientists in the United States and India are learning how the pathogen
protects itself and how it stimulates inflammation. In fiscal year 2002
the NIAID established the Millennium Vaccine Initiative to search for
novel vaccines against tuberculosis and malaria. Although the latter
disease remains relatively rare in this country, malaria around the
world causes an estimated 300 to 500 million new cases and more than 1
million deaths each year. There still is no malaria vaccine, but NIAID-
supported research has accelerated vaccine development.
Global events can also affect the threat from newly emerging
infectious diseases, whether through travel or trade that carries
pathogens from place to place. In the past few years, several
frightening diseases have found their way into various human
populations, including neurodegenerative disease caused by
transmissible spongiform encephalopathies (TSE, e.g., ``mad cow
disease''), West Nile virus (WNV) infection, hantavirus infection and
SARS. There will certainly be more of these unexpected outbreaks, as
new microorganisms evolve and old ones develop greater virulence
through resistance to standard drug therapies. NIAID research
encompasses these and other emerging diseases, within strategic plans
designed to anticipate more mysterious infections in the future. The
NIAID is supporting WNV vaccine development and participates in the
Interagency Task Force on West Nile Virus established in 2002. Studies
at NIAID suggest that TSE diseases may be more widespread than
believed, and scientists there plan future studies to understand its
transmission from animal species to humans.
New infectious diseases attract headlines, but less dramatic
diseases cost excessively in lost human and economic resources. NIAID
resources are also needed to address ``everyday'' diseases such as
hepatitis, sexually transmitted diseases, and food- and water-borne
illnesses. The NIAID has made significant investments to blunt the
impact of these and similar diseases, which account for many millions
of illnesses each year. For example, there are an estimated 15 million
new U.S. cases of STDs annually. NIAID-supported researchers have,
among other discoveries, recently determined that the bacterial agent
of gonorrhea binds to different molecules in the male and female
genital tracts. Such detailed understanding of microbial biology and
pathogenesis traditionally leads to successful therapies and prevention
strategies. In 2000 an estimated 2.1 million people died worldwide from
diarrheal diseases, often transmitted through food and water. At NIAID,
development of a vaccine against rotavirus, a major cause of diarrhea
in children, is a high global health priority.
The recently released Institute of Medicine report, ``Microbial
Threats to Health: Emergence, Detection and Response,'' reports that
``Today's outlook with regard to microbial threats to health is bleak
on a number of fronts. AIDS is out of control in much of sub-Saharan
Africa, India, China and elsewhere; bioterrorism has become a reality;
the relentless rise of antimicrobial resistance continues . . .
microbial threats present us with new surprises every year.'' Research
is the underpinning of the nation's capacity to prevent and control
infectious diseases. A strong, stable biomedical research and training
infrastructure is needed to investigate the mechanisms of molecular
pathogenesis, or the cause of infectious diseases, the evolution of
pathogeneses, drug resistance, and disease transmission. Fundamental
scientific knowledge is needed to design new vaccines, discover new
classes of antimicrobial compounds and devise new preventions and
treatments for infectious diseases.
The ASM urges Congress to add 10 percent in fiscal year 2004 to the
doubled budget of the NIH to bring the total to $30 billion. Continued,
sustained investment in NIH and NIAID is critical to dramatically
reduce the threat from both naturally occurring infectious diseases and
intentional use of biological agents.

______

Prepared Statement of the Upper County Branch, Montgomery County,
Maryland Stroke Club

A STROKE SURVIVOR: A PERSONAL STORY

Hello. My name is Susan Emery. I am the presiding officer of the
Upper County Branch of the Montgomery County Stroke Club and I'm a
stroke survivor.
Our club conducts education and support activities for stroke
survivors, their family members, and caregivers. We serve people in the
Maryland suburbs of Washington, DC, and are fortunate to be in the same
county as the National Institutes of Health. We have benefited on many
occasions by the participation of NIH staff members in our membership
meetings. They have been generous in sharing information about their
research into stroke prevention and treatment with us.
On December 26, 1965 at the age of nine, I was playing a new game
with my brother and a few friends at the kitchen table. That's the last
thing that I remember. I was unconscious for the next two days. My
mother first learned, incorrectly, that I had spinal meningitis. I was
transferred to another hospital where my mother was told that I had
little chance of survival. Yet I'm here, more than 36 years later, and
I've survived a stroke.
People seldom associate strokes with children. These strokes are
rare, but they do happen. There are about three cases of stroke per
year in every 100,000 children under age 14. One of the difficulties in
dealing with strokes in children is getting the right diagnosis
quickly. There are often delays in diagnosis of childhood stroke.
I spent two weeks in the hospital and the following four months in
intensive physical therapy. My tenth birthday was spent in the
hospital, and I have a picture in my photo album of myself with my
mother and a new friend. My right eye is turned down, my mouth is
turned down, but I'm still smiling. During the four months in therapy
at Holy Cross in Detroit, I learned the basics: how to walk, how to
talk, and how to move the fingers on my right hand. My mother followed
the doctor's instructions and sent me back to school very quickly,
where classmates helped me button and unbutton my coat and carry my
books, and teachers taped papers to the desk so I could learn to write
again. I survived that four months, and would never wish to repeat it.
I've been in therapy six times in my life. I need to tell you about
the one time that was the most important to my family. I was 26 years
old and had just had my first child. I kept her safe, for I knew my
limitations. I always used my left hand to support her. But when she
was six months old, she got to be a little heavy, and twice, as I was
putting her on the floor to change her diaper, my right hand slipped
from under her buttocks. She fell only inches in both cases and didn't
even notice. But I noticed. I went in for two or three months of
therapy close to Denver, Colorado, where I was living at the time. Here
for the first time, they helped my right hand and arm dexterity through
occupational therapy. I also learned that I had aphasia--the inability
to speak, write or understand spoken or written language because of
brain injury--because I called things like cornucopias, unicorns
instead of fruit baskets. Instead of the word being the same, I picked
a word that sounded the same. These therapists in Colorado worked with
my mind and my body and I will forever be in their debt.
Close to fourteen years ago, I made a new life for myself in
Maryland. Here, I've been an outpatient at the National Rehabilitation
Hospital three times: once for my right foot, once for my Achilles
tendon and once for my right knee. I've seen numerous physiatrists, all
of whom are excellent in their field. I've also seen my fair share of
therapists. Since I've had therapy off and on for most of my life, I
can honestly say that the first few times you go in to see a therapist,
you'll come out hurting more than when you went in. But in the long
run, they help tremendously.
On a work related note, I received a Bachelor of Science in 1978
from Michigan State University in Computer Science and worked for 12
years in the field. I started working in the telecommunications
industry in 1990, and got a Master of Science from the University of
Maryland, University College in Telecommunications Management. I now
work for ITT Industries as a senior engineer on a contract supporting
the Federal Aviation Administration's leased telecommunications
activities, and have worked there for more than five years. I've done
more than survive. I've become a productive member of society.
Stroke research has changed my life. Without the research carried
out 40 to 50 years ago, I would not have benefited from electric shock
therapy that made me understand the muscles that moved my fingers.
Without research done 30 years ago, I may not have been able to
understand how to exercise my hand for dexterity. Without research
performed ten years ago, the people around me would not understand that
they need to get me to the hospital quickly if ever I have another
stroke. Without current support, researchers may never understand how
to stop strokes before they happen or how to make current stroke
survivors live healthier lives.
Stroke remains America's No. 3 killer and a major cause of
permanent disability. About an estimated 4.7 million Americans live
with the consequences of stroke and about 1 of 4 is permanently
disabled. Yet, stroke research receives a mere 1 percent of the
National Institutes of Health budget. I strongly urge you to
significantly increase funding for the National Institutes of Health-
supported stroke research, particularly for National Institute of
Neurological Disorders and Stroke-supported stroke research. NIH stroke
research is essential to prevent strokes from happening to children and
adults in the first place, and to advance recovery and rehabilitation
of those who survive this potentially devastating illness.

______

Prepared Statement of Mended Hearts, Inc.

I am Robert H. Gelenter, the legal representative for the Mended
Hearts Inc, a national heart disease patient support group of 25,000
members across the country. We visit patients in about 450 hospitals
throughout the United States. I have been appointed by the group to
assist in this lobbying effort--a volunteer position.
More than 27 years ago, I was diagnosed with a rare heart disease.
After having severe chest pains and trouble breathing for more than two
years, I was diagnosed with hypertrophic cardiomyopathy, a disease in
which the heart enlarges. The heart muscle eventually thickens so much
that it can't pump blood effectively and does not grow in the normal
parallel patterns. More than 36 percent of young athletes who die
suddenly die from this disease. But, it affects men and women of all
ages. It is sudden and one of the things known about this disease is
sudden cardiac death. There is no cure for this disease. Medication may
work and there is surgery that may or may not alleviate the pain. If
that doesn't work a patient may need a heart transplant, yet spare
organs are scarce. The doctor who made my diagnosis was trained at the
National Heart, Lung, and Blood Institute of the National Institutes of
Health.
Initially, I received several medications which allowed me to
engage in most activities. But, some activities, such as walking up
hills, gave me problems like shortness of breath and severe chest
pains. But, generally I could function normally. However, after about
11 years, the discomfort was increasing, and it became apparent that I
was in serious trouble. I could not walk sixty feet without having to
stop to catch my breath. Sometimes the pain was so great that I would
almost double over in the middle of the street. My wife told me that my
face would become gray. The perspiration would pour off by body. If I
was lucky I could find a chair to sit on. The quality of my life had
deteriorated so drastically that I knew I needed some treatment.
Finally in 1988, I went to Georgetown University Medical Center for
an angiogram--the gold standard for diagnosing heart problems. The
cardiologist who performed the angiogram told me that he had bad news
and worse news. The bad news was that I had a 95 percent blockage in my
left anterior descending heart artery--the so-called ``widow makers
spot.'' The worse news was that I had a major chance of having a major
heart attack with a less than a 5 percent chance of surviving that
heart attack because of the hypertrophic cardiomyopathy. At this point,
my wife was quietly crying and I was perspiring profusely. Since
Georgetown University Medical Center did not have the expertise to
operate on me, they called the NIH to see if they would accept me as a
patient. I was sent home pending notice from the NIH.
My parents begged me to go to New York or San Francisco for second
opinions. But, I knew that I had run out of alternatives. No matter
what the result, I needed treatment and I needed it immediately.
I was accepted by the NIH. After entering the National Heart, Lung,
and Blood Institute on February 6, I was operated on February 11, 1988.
No matter how trite the expression--that was the first day of the rest
of my life. The surgery, considered drastic and rare, is still
considered the gold standard throughout the world for the treatment of
hypertrophic cardiomyopathy. The Murrow Procedure, in honor of the
creator, was developed and improved at the NIH.
Although this surgery is no longer performed at the National Heart,
Lung, and Blood Institute, there is another experimental ongoing
protocol in which the same effect is being attempted by using alcohol
to deaden the excessive heart tissue.
Now, I am on medication for the rest of my life. My condition is
progressive. Seven years ago, I was fitted with a pacemaker to insure
that my heart beats at the correct rate. I am 100 percent dependent on
this pacemaker. Without the pacemaker, there are times when my normal
heart beat is so slow that I would die.
I am eternally grateful to the physicians funded by the National
Heart, Lung, and Blood Institute, particularly to Dr. MacIntosh and his
staff, for the gift of life. Because of this marvelous research
supported by the NHLBI, I have lived 15 years pain free. I have seen
two children graduate from college and three grandchildren born, I have
shared these years with a wonderful wife. I have been able to work at
my profession--an attorney at law.
I have had the gift of life restored to me. So to express my
gratitude for that gift, I visit patients recovering from heart
episodes at two hospitals, Washington Hospital Center and Washington
Adventist Hospital.
I ask for an fiscal year 2003 appropriation of $3.5 billion for the
NHLBI, including $2.1 billion for its heart disease and stroke-related
budget.
My experience is the proof that the research supported by the
National Heart, Lung, and Blood Institute benefits not just the
patients at the NIH Clinical Center, but throughout the United States.
The benefits go worldwide as well.
Heart attack, stroke and other cardiovascular diseases remain the
No. 1 killer and major cause of disability of men and women in the
United States. Nearly 40 percent of people who die in the United States
die from cardiovascular diseases. This year, nearly 950,000 Americans
will die from cardiovascular diseases, including almost 150,000 under
the age of 65.
Thank you for your support of National Heart, Lung, and Blood
Institute's heart research.
______

DEPARTMENT OF EDUCATION

Prepared Statement of the NCB Development Corporation

On behalf of NCB Development Corporation, I am pleased to submit
written testimony to the United States Senate's Committee on
Appropriations Subcommittee on Labor, Health and Human Services and
Education on the subject of charter school facility finance. I am Terry
D. Simonette, president and chief executive officer of NCB Development
Corporation located in Washington, District of Columbia and I would
like to thank Chairman Specter for the opportunity to submit this
written testimony today on fiscal year 2004 funding for Charter School
Facility Finance which addresses the needs of the underserved and
displaced communities under the jurisdiction of the Subcommittee. At
the outset, let me share with you some background information on NCBDC
and our approach to address the charter school facility finance
problem. Then I would like to share our thoughts on why charter schools
could be easily looked at as community development strategy.
NCB Development Corporation (NCBDC) was founded as a 501(c)(3) non-
profit affiliate of the National Cooperative Bank pursuant to the
National Consumer Cooperative Bank Act (Public Law 95-351). NCBDC is a
national mission-driven non-profit organization that for 25 years has
provided innovative financial and development services to improve the
lives of low-income individuals, families, and communities. By
creatively investing in our neighborhoods, advocating elected officials
around public policy, and collaborating with other national and local
community-based organizations, NCBDC helps charter schools finance and
develop facilities; creates a policy environment that supports strong,
self-sustaining communities; enables community health centers to expand
to serve more patients; preserves and creates affordable housing; and
helps socially responsible businesses thrive.
NCBDC's solutions are based on the cooperative principles of self-
help, democratic control, and open participation. NCBDC targets
community needs nationwide that have not been adequately addressed by
traditional approaches. In its 25 years of existence, NCBDC has grown
from a provider of high-risk development finance to a multifaceted
national organization engaged more broadly in pursuing solutions to
some of the most urgent problems facing under-served communities today.
Mr. Chairman, as you may already know, there are currently about
2,700 charter schools in 36 states and the District of Columbia, giving
nearly 684,000 children an opportunity to receive a quality education.
Unlike traditional public schools, charter schools are not given a
public building in which to operate. Instead, it is up to the charter
school to find and fund an appropriate location. Operators, who are
often concerned parents, teachers, or nonprofit organizations,
typically have little experience with planning, zoning, and building
code regulations, let alone finding affordable space and adequate
financing. And very few financing organizations are willing to lend to
charter schools.
Since the mid-1990's, NCBDC has been considered an expert in the
small community of organizations in the forefront of designing and
implementing innovative financing strategies to meet charter schools'
demand for capital. To date, between our lending and technical
assistance programs, NCBDC has assisted over 200 schools in 17 states,
provided more than $30 million in facilities financing, and helped
leverage more than $100 million in additional funds. Major partners in
these initiatives have included the U.S. Department of Education, the
National Charter Schools Alliance (formerly Charter Friends National
Network), the Florida Consortium of Charter Schools and the Midwest
Charter Facilities Coalition.
In the initial round of the highly competitive U.S. Department of
Education's Charter School Facilities Financing Demonstration Program,
NCBDC partnered with The Reinvestment Fund, a leading community
development financial institution based in Philadelphia, and
Foundations, Inc., a leading technical assistance provider. We were
successful in receiving a $6.4 million grant to create the Charter
School Capital Access Program (CCAP). CCAP is in the process of
creating a $40 million loan pool that will be leveraged with capital
from investor types including banks and other financial institutions
like PNC Bank located in Pennsylvania. This is a leverage ratio of
nearly seven private dollars for every one public dollar. Through CCAP,
we will focus on schools located in the Mid-Atlantic States including
New York, New Jersey, Pennsylvania, Delaware, Virginia and the District
of Columbia.
In addition, in partnership with the National Charter Schools
Alliance (formerly Charter Friends National Network), NCBDC is a
recipient of a U.S. Department of Education National Activities Grant
that establishes a pilot program of on-the-ground technical assistance
and workshops in facility development and financing. NCBDC's receipt of
the grant is a testament to its combination of financing acumen and
commitment to community revitalization. We are working with the Florida
Consortium of Charter Schools and the Midwest Charter Facilities
Coalition to provide professional support to charter schools seeking to
develop new facilities. As part of the 18-month technical assistance
program, NCBDC and its partners make available on-site resource
specialists who are capable of providing assistance to charter schools
in all aspects of facilities development and financing. On a national
level we are working with grassroots charter support groups to conduct
workshops around the country that help charter schools manage the
challenges of facilities development and financing.
In the past six months, NCBDC has had the opportunity to provide
technical assistance in Pennsylvania. In November 2002, NCBDC, along
with The Reinvestment Fund, conducted training in Philadelphia on
charter school facility financing, sponsored by the Northwest Regional
Education Laboratory. In January 2003, NCBDC, again in partnership with
The Reinvestment Fund, conducted a training given by the Pennsylvania
Charter School Resource Center in Harrisburg, Pennsylvania, discussing
charter school facilities financing and our new joint venture, the
Charter School Capital Access Program or CCAP.
Because we have seen firsthand the dire need for charter school
facility finance, NCBDC supports the continuation and expansion of the
Charter School Facilities Financing Demonstration Program by increasing
appropriations levels as authorized by the United States Congress in No
Child Left Behind (NCLB or Public Law No. 107-110) signed by President
George W. Bush into law on January 8, 2002.
A United States General Accounting Office (GAO) report ``Charter
Schools: Limited Access to Facility Financing'' (GAO/HEHS-00-163,
September 2000) states that facilities financing issues pose a
formidable obstacle for the vast majority of start-up and established
charter schools. Each of the three major financing approaches--
municipal bonds, per pupil allocations, and conventional financing--
offer only limited opportunities for charter schools that seek funds to
lease, acquire, construct, or renovate a facility. There is no more
serious challenge facing charter schools nationally than obtaining
upfront and ongoing financing for facilities. Despite the difficulty in
securing credit, charter schools are remarkably resourceful in
addressing their facilities needs, yet are generally unable to take
advantage of the financing that is available to school districts and
typically pay for facilities out of their regular operating funds. As a
result, finding and funding a building impacts limited operating funds
which in turn impacts teachers, administrative personnel and the
purchase of everyday supplies.
Not finding a suitable home has delayed school openings, and forced
schools to scale back their programs or shut down altogether. According
to the Center for Education Reform, a survey of 84 charter schools that
never opened showed that 27 percent were due to the inability to find
adequate facilities. Of 194 charter schools that were closed, 9 percent
stopped operations due to facility issues. Charter schools are usually
distinguished by their relatively small size, perceived instability of
revenue streams, short operating track records, and political
uncertainty. These characteristics pose formidable obstacles for the
private sector, which has a low-risk tolerance and is often reluctant
to lend in an ``emerging'' market. Consequently, charter schools also
require new, creative financial models to address their growing demand
for capital.
NCBDC applauds the President and the United States Congress in
their commitment to charter education. Following the fiscal year 2003
appropriations process, the President supported and the Congress passed
legislation that provided $25 million dollars for the new Credit
Enhancement for Charter Schools Facilities Program within the
Department of Education's Office of Innovation and Improvement to
assist charter schools in acquiring, leasing, and renovating school
facilities. This is done through a competitive grant process to public
and non-profit entities for loan guarantees, debt insurance, and other
activities that facilitate private lending. Much like the Charter
Schools Facilities Financing Demonstration Program, this program will
award an estimated 3-5 awards to be given within a range of $2.5-$10
million.
While the demand for charter school facility finance is estimated
nationally at $2 billion, $25 million falls far short of the $200
million authorized in No Child Left Behind, as outlined in the Carper-
Gregg Amendment in the act. The bipartisan Carper-Gregg Amendment
authorized substantial funding for the continuation and expansion of
the demonstration program by providing not only $200 million yearly in
grants to entities that help charters leverage private financing for
facilities and start-up costs, but it also expanded the Public Charter
Schools Program to provide $200 million in matching grants to states
that establish or enhance programs of per pupil facilities funding
assistance to charter schools.
With our long history of a strong commitment to community
development, particularly as it relates to underserved urban
populations, NCBDC believes that strong schools are a cornerstone of
any thriving community. Good schools keep families involved in
neighborhoods, and this involvement is essential to community
revitalization. Public charter schools encourage stability by offering
parents a tuition-free choice outside the traditional public school;
charter schools can keep families in communities with under-performing
public schools. In addition, NCBDC has found that in the process of
developing a facility, charter schools can be an effective tool for
urban renewal and neighborhood revitalization. Finally, NCBDC believes
that strong school-community partnerships, which are encouraged by
charter schools, help strengthen neighborhoods.
An example of a charter school that has affected the community
around it is the Universal Institute Charter School, started by
Universal Community Homes (UCH), in Philadelphia, Pennsylvania. UCH is
a community development corporation that provides housing, economic
revitalization, and training and social services to the area's low-
income residents. UCH started the school due to unfortunately high
rates of violence and disgraceful test scores in local public schools.
In partnership with The Reinvestment Fund, NCBDC made two loans to the
school. Together, NCBDC and The Reinvestment Fund provided more than $2
million in financing for the school's building, when it opened in 1999
and again in 2000 when it needed additional financing for expansion and
renovations. Today, the Universal Institute Charter School is a Title I
school, filled at maximum capacity, with a waiting list of more than
400 children. In March of 2003, its charter was renewed for another
five years. The school has come to be considered an integral part of
the community.
During this time of budget deficits and the rise in domestic
security costs with the aftermath of war, fiscal constraints make
efforts to fulfill Congress' commitment to education, especially
charter school facility finance, far more difficult then it has been in
years past. Charter advocates, including NCBDC, have long been
supportive of the efforts by the Administration and Congress to provide
adequate appropriations for the charter school facilities initiatives
set forth in the landmark bipartisan NCLB. We are hopeful that this
Subcommittee, and ultimately this Congress, will provide appropriate
charter school funding at the authorized levels, as charter schools are
continuously faced with the lack of funding or expertise to purchase,
build, or renovate a building and other physical plant requirements.
NCBDC appreciates this opportunity to reinforce the critical need
served by supporting expanded funding for charter school facility
finance. With your assistance, the charter school community can
continue to make a difference in the lives of our most vulnerable
children, families, and communities. In summary, NCBDC requests a NCLB
authorized fiscal year 2004 appropriation level of $200 million to help
charters leverage private financing for facilities and start-up costs--
an increase of $100 million over the President's fiscal year 2004
request and $175 million over the fiscal year 2003 appropriation level.
In addition, NCBDC supports the continued expansion of the Public
Charter Schools Program by supporting the President's request of $220
million to provide matching grants to states that establish or enhance
programs of per pupil facilities funding assistance to charter schools.
Thank you again for allowing NCBDC to present its concerns
regarding fiscal year 2004 appropriations provision of charter school
facilities financing in testimony before the Subcommittee.

______

Prepared Statement of Americans for the Arts

REQUEST

Americans for the Arts is pleased to submit testimony in support of
fiscal year 2004 appropriations at a level of $53 million for the Arts
in Education program of the U.S. Department of Education (USDE).
Americans for the Arts is one of the leading national nonprofit
organizations for advancing the arts and arts education in America.
With a 40-year record of objective arts industry research, it is
dedicated to representing and serving local communities and creating
opportunities for every American to participate in and appreciate all
forms of the arts.
As members of the Subcommittee know, the Elementary and Secondary
Education Act provides that funding up to $15 million be directed to
the John F. Kennedy Center for the Performing Arts and VSA arts. Prior
to fiscal year 2001, funding never exceeded the floor level. Beginning
in fiscal year 2001, however, Congress has consistently appropriated
funding exceeding the floor in order to fund a broader array of arts
education programs. For fiscal year 2003, Congress appropriated $33.7
million. This new funding has allowed the Department of Education to
add three significant programs:
--a competitive grants competition to further develop established
arts education models;
--support for professional development for arts educators in four
arts disciplines; and
--a program establishing partnerships between schools and community
cultural organizations to serve at-risk children and youth.
We ask the Subcommittee to appropriate $53 million for fiscal year
2004, with the bulk of the increase to be allocated to the Arts in
Education Model Development and Dissemination Program, Professional
Development training in music, theater, dance and the visual arts, as
well as Cultural Partnerships for At-risk Children and Youth.

THREE REASONS TO INCREASE ARTS EDUCATION FUNDING

The reasons for increasing arts education funding are many and
varied, but we will begin with the most important: arts education works
for children. An increasing volume of research confirms that arts
education has substantial beneficial effects in several areas,
including but not limited to academic achievement. We refer the
Subcommittee to a recent research compendium Critical Links: Learning
in the Arts and Student Academic and Social Development, released by
the Arts Education Partnership, which includes 62 separate studies
pointing to ``critical links'' between arts education and reading,
writing, mathematics, cognitive skills, motivation, social behavior,
and the school environment. Of special importance, given USDE's core
function of providing support to those most in need, the studies
suggest that arts education may be especially useful for students in
economically disadvantages and/or in need of remedial instruction. The
arts sometimes succeed when everything else has failed.
The second reason is that schools desperately want it. Even now,
when the accountability and testing regimens of the No Child Left
Behind Act have focused schools' attention on what some call ``the
basics,'' many schools understand that the arts are a core academic
subject, as stipulated by No Child Left Behind, that they are
essential, and that they work. The Department of Education's first
model grant competition generated overwhelming interest despite the
tiny number of awards. A larger amount of funding, coupled with a
smaller grant size, will at least begin to address the demand.
The third reason is that while there is tremendous interest in arts
education, substantial improvements need to be made to delivery
systems, including promoting cooperation and joint programming between
community cultural organizations and schools for afterschool arts
education programs for at-risk youth; better professional development
training for arts teachers, artists, and classroom generalists;
developing authentic and practical assessments of arts learning; as
well as much more research on effective programs. USDE's model grants
program aims to further develop established programs that improve arts
education, to evaluate these programs, and to disseminate the results.
Thus, it is absolutely in accord with a central principle of the
federal role in education: to find out what works and to disseminate
this information to states and local school districts so that they may
select and tailor programs to fit their own needs and circumstances.
This is the reason that we urge the Subcommittee to recommend that
funding include at least $1 million for evaluation and dissemination.
We note that each of the projects funded under this program include a
substantial research component. It is particularly important to add
this modest amount of funding because the USDE's existing and planned
research efforts, including the What Works Clearinghouse, do not
include substantial work on arts education.

CASE EXAMPLE: MISSISSIPPI'S WHOLE SCHOOLS INITIATIVE

In order to show in more detail how the model grants program
further develops programs for improving arts education, we turn to the
Mississippi Whole Schools Initiative. In 2001, Mississippi's Whole
Schools Initiative was awarded a $1 million grant from USDE's Arts in
Education Model Development and Dissemination Program. The program's
roots go back to 1991, when as a response to ``back to basics'' school
reform and the lack of arts instruction in Mississippi, the Mississippi
Arts Commission (MAC) commissioned a study of the Mississippi
environment, appropriate national models and relevant research. The
resulting paper called for a pilot program characterized by the
involvement of every student and teacher in arts-infused learning; the
integration of the arts into daily classroom instruction for all
students; and sequential, comprehensive instruction for all students in
dance, drama, visual arts, and music by certified arts specialists that
would be documented and evaluated. The pilot program began in 1992.
In 1996, MAC and the Mississippi Alliance for Arts Education
commissioned the Mississippi State University to conduct a survey on
the status of arts instruction in Mississippi public schools. Among the
findings: (1) one full-time music teacher for every 840 students,
including high school band programs, (2) one full-time visual arts
teacher for every 3,150 students, (3) one full-time drama teacher for
every 17,848 students, and (4) one full-time dance teacher for every
31,235 students. Research conducted recently revealed that, in 1999,
the ratios of arts teachers to students remain little changed.
The Whole Schools Initiative was launched in 1998 with a core
belief that art is an essential part of every child's education,
speaking to students in language that demonstrates concepts, reveals
symbols, forges connections, and helps prepare them for life. It is the
first comprehensive statewide arts education program in Mississippi.
Its goals are to improve student academic achievement through infusing
arts into the basic curriculum, to enrich students by increasing their
skills and knowledge in all arts disciplines, to assist the
professional and personal growth of teachers and administrators through
arts experiences, to use the arts to increase parental and community
involvement in schools and to assist schools in building a sustainable
system for supporting arts infusion.
Not only does the program improve the quality of arts education
being offered in participating schools, it is often the only chance
that Mississippi children, in poorly funded schools and from families
living below the poverty level, will ever have to receive any arts
instruction. Nineteen of the 26 schools involved in the initiative
serve student populations where 35 percent or more of the students
qualify to receive free/reduced lunches, fourteen schools have at least
70 percent and seven schools have at least 90 percent.
Eleven schools involved in the initiative are located in rural
communities and others serve them. Six of these schools have the lowest
per pupil expenditure in the state. In 2001, the Commission responded
to the critical teacher shortage and educational disparities in the
Mississippi Delta Region by locating the summer institute in the Delta,
recruiting Delta schools and partnering with Delta State University on
pre-service and in-service training of teachers for this region. This
weeklong institute serves to inform, empower and motivate school teams
and gives them the tools to successfully infuse the arts into their
school curriculum. Schools attend in teams of eight, including the
principal, project director, classroom and arts teachers and a
community representative. District superintendents are required to
participate in a one-day program planned with their needs in mind.
Attendance by this team and superintendent is mandatory in order to
receive grant funds from MAC.
Twenty-six schools now participate in the Whole Schools Initiative,
representing the economic, racial and geographic diversity of
Mississippi. Each designs an arts-based, school-wide program, with a
five-year strategic plan appropriate to its resources, demographics,
philosophy, and school culture. MAC provides the tools necessary for
planning and implementation and requires the inclusion of two essential
components: the use of arts teachers and visiting artists in the areas
of dance, drama, music, visual art, creative writing and folk arts to
strengthen the place of the arts as a core academic subject in its own
right; and infusing the arts in all academic subjects in order to
increase student success in these subjects. Each school receives grant
funds, technical assistance, mentoring and professional development for
six years, as long as it shows progress towards the goals of its
strategic plan and re-applies to the grant program each year. The
schools partner with various education and arts-based entities and
other community resources to carry out the activities of the
initiative. Partnerships include local arts councils, Institutions of
Higher Learning, the Mississippi Alliance for Arts Education,
professional artists, local school districts and art museums.
In 2001, the Whole Schools Initiative was one of eleven successful
applicants for a grant from USDE's Arts in Education Model Development
and Dissemination Program. This $1 million grant is allowing MAC to
expand its role with universities, encouraging the development of pre-
service courses that would strengthen arts infused instruction and aid
arts majors in becoming effective instructional leaders. The grant will
also enable MAC to expand and refine its evaluation model, a model
based on both sociological and statistical data. A final component of
the USDE funding will allow MAC to develop training materials and
procedures that can be used to replicate the program in other settings.
At the end of the three-year grant period, the project will
``blueprint'' a model built on a research base, field-tested in a
diverse set of schools, evaluated internally and externally, and which
has already produced substantive results.
This funding has made possible extensive professional development
opportunities for teachers and administrators. More than 15,000
students and 800 educators benefit annually from activities at a
weeklong summer institute, two retreats and field advisor visits. Other
ways in which it is strengthening the program include a course for
education majors that is being developed at the Delta State University,
a ``teacher friendly'' and ``teacher useful'' interactive web site, and
the designation of model schools in the north, central, and southern
regions of Mississippi where the initiative's work may be observed.
Other states will benefit from the documentation and dissemination
of the initiative. Many states have a strong interest in implementing
this model but lack the resources, knowledge and experience to do so.
States that have approached MAC and participated in the institute
include New Mexico, Illinois, Kentucky, Florida, and Louisiana.

CONCLUSION

As the example of the Whole Schools Initiative demonstrates,
federal funds boost the quality and quantity of support for arts
education as well as the knowledge that can be gained and disseminated
across the education establishment. Increased funding means more help
for state departments of education and for educators in schools and
cultural organizations, and most important, it means a better education
for our children. We urge the Subcommittee to recommend $53 million in
funding for the USDE's Arts in Education programs in order to allow
more programs like Mississippi's Whole Schools Initiative to flourish.

______

Prepared Statement of the Thurgood Marshall Scholarship Fund

Thank you for allowing us this opportunity to submit written
testimony on behalf of the Thurgood Marshall Scholarship Fund (TMSF). I
am asking you to support a total request of $20 million in the fiscal
year 2004 Labor, Health and Human Services, Education appropriations
bill. This amount includes $10 million for TMSF's Capacity Building
Program and $10 million for Technology Expansion Programs at Public
HBCUs.
Thurgood Marshall Scholarship Fund represents 45 Public HBCUs and
five historically black law schools located in 22 states, the District
of Columbia and the U.S. Virgin Islands. TMSF is only national
organization that provides merit scholarships, programmatic and
capacity building support to the staff and students attending Public
HBCUs. Currently 215,000 students attend Public HBCUs, and many of them
are the first in their families to attend college.
To continue providing valuable and meaningful opportunities for so
many deserving students, Public HBCUs must be prepared to provide
students with an educational experience that prepares them for today's
increasingly competitive and ever-changing world. TMSF member schools
lack the financial resources to fully realize this mission. The
National Capacity Building and Technology Expansion Programs for which
we are seeking funding will help our schools to do so by focusing on
developing student and faculty leadership, increasing technology,
operations, communications and staff and student expertise, and
strengthening minority professional involvement with students in the
areas of community service and career development. Just as importantly,
increased outreach activities of Public HBCUs to high school guidance
counselors and students will help assure that those in need are aware
of and have access to opportunities available at Public HBCUs.
The National Capacity Building Program includes the following
elements:
--Leadership Development.--Consists of two national training
conferences for students attending Public HBCUs and the five
public historically black law schools. This program will
provide resume building, leadership training, strategic
planning, community service, technology training and career
development.
--Member School Training and Development.--A national program
designed to provide training and development to the executive
management team, faculty and staff at TMSF member colleges and
universities in the areas of financial management, outreach,
human resource management, and leadership development. The
second component of the program is a series of regional
training conferences that will link local businesses, state,
county and city governments and nonprofit organizations with
Public HBCUs to explore innovative partnerships to help HBCUs
survive and grow.
--Student Internship Placement Services.--A program designed to
provide training and development opportunities for placement
officers from the 45 Public HBCUs by allowing them to interact
with human resource officers from corporations, non-profit
organizations, and federal agencies, and increasing
information-sharing on career marketing.
--National College Guide.--Will provide for the development of a
national college guide and on-line directory designed to
increase college enrollment for minority students. The guide
will feature financial aid resources, descriptions of the 45
Public HBCUs and a common application that can be used at any
one of the TMSF member schools. The guide will be distributed
to the nation's 14,000 public school districts.
--Volunteer Training.--This program is designed to engage diverse
volunteers of all ages, race and religions in working with at-
risk youth. The volunteers will provide mentoring and
assistance in the areas of college enrolment, career planning
and leadership development. A national volunteer training
program will be designed and piloted with ten schools to
mobilize 1,000 volunteers.
--Post-Graduate Activism.--A national program designed to organize
and train graduates and students of Public HBCUs in the areas
of career development and community service, including national
training seminars to establish graduate and student councils to
explore ways that Public HBCU graduates can leverage their
workplace skills to benefit Public HBCUs. This program will be
complimented by an interactive website.
--Community Outreach Offices.--This program will provide for
additional support for the Mid Western Capacity Building Office
and the establishment of an office in the South and Western
States. These offices will work with local high schools to link
students and parents with college attendance; work with the
local and regional employers to link students from the areas
with internship and job opportunities addressing the local and
regional talent drain issues facing many communities.
--National Counselor Training & Youth Outreach.--The National
Counselors Training program will design, produce and provide
training to the middle and high school counselors at the
nation's 17,000 school districts on opportunities at Public
HBCUs. This program will be complemented by a web site where
counselors can access applications to the 45 member colleges
and universities along with tips on preparing families on how
to support their children who may be the first to attend
college.
--Research.--A national research program designed to collect and
present the demographical data of the 45 Pubic HBCUs, this
program will study student enrollment trends; private, pubic
and individual giving trends by institutions; enrollment by
race; enrollment by regions of the country; economic impact of
the colleges and universities; tracking of the community impact
of the schools; retention and recruitment rates.
The Technology Expansion Project is equally important, as
illustrated in the following statistics:
--Two out of five Public HBCUs are in urgent need of upgrading their
technical infrastructure.
--On only one out of forty-five campuses, do more than 75 percent of
students own computers.
--Less than one-half of TMSF member school campuses have a moderate
or high degree of sophistication providing IT and technical
support staff.
--Forty percent of TMSF member schools reported that they require
both additional computer hardware and software to conduct their
Advancement programs.
This program will make resources available to 20 of our 45 member
schools in the following areas:
Campus-wide Information Tracking System.--Development of an
intranet for each institution to improve internal and external
communication practices while ensuring consistency and eliminating
duplication. The intranet will allow the sharing of critical contact
information, which will in turn provide faculty with an efficient and
effective means for sharing best teaching practices; thus improving the
quality of Public HBCU students' educational experience.
Advancement Office IT infrastructure.--Twenty grants at an average
of $50,000 each to improve internal capacity in the Advancement
Offices. Grants could be used to upgrade hardware, software, Alumni
tracking, web presence or similar programs within the Advancement
office based on the individual needs of each school. These grants will
be administered through an RFP process.
--Information Technology Resource Center (ITRC).--The ITRC will
establish and maintain a special website accessible only to
member schools to share resources, files and ideas with the
number of uses open to the creativity of the TMSF community.
The ITRC includes the following components: distance-learning
courses, a resource database, which can be used to monitor
funding resources, technology developments and opportunities,
and to disseminate information to public sources, strategic
planning tools, a web-based forum for interactive sharing of
resources and ideas, and continuing education for faculty and
staff.
TMSF member schools are a critical source of higher education
for African-Americans. Over two million alumni have graduated
from TMSF member schools.
TMSF was created to bridge the technological, financial and
programmatic gap between public and private HBCUs. Since our
inception, TMSF has provided more than $20 million in
scholarships and programmatic support to students attending
Public HBCUs.
--Nearly eighty percent of all students enrolled in historically
black institutions attend TMSF member schools.
--Ninety percent of all students attending Public HBCU's require some
form of financial assistance.
--TMSF member law schools graduate more than fifty-six percent of the
African-American lawyers in the nation.
--TMSF schools graduate more than fifty-eight percent of the African-
American public schoolteachers across the country.
As a national resource, Public HBCUs supported by TMSF are
committed to building the infrastructure and capacity to continue to
support their students and to serve as instruments of economic growth
in their states and across our nation.
In closing, I thank you for your past funding of TMSF, and urge you
to support this request for additional funding that will allow us to
carry out our important mission--Preparing a New Generation of Leaders.

______

Prepared Statement of the American Chemical Society

The American Chemical Society (ACS) would like to thank Chairman
Arlen Specter and Ranking Member Tom Harkin for the opportunity to
submit testimony for the record on the Labor, Health and Human
Services, Education Appropriations bill for fiscal year 2004.
ACS is a non-profit scientific and educational organization,
chartered by Congress, representing more than 161,000 individual
chemical scientists and engineers. The world's largest scientific
society, ACS advances the chemical enterprise, increased public
understanding of chemistry, and brings its expertise to bear on state
and national matters.
Federal investments in research and science education are critical
to producing the technologies and scientific workforce that ultimately
determine our economic and national security. As our economy becomes
increasingly dependent on technology, the demand for scientists and
engineers during the next decade is expected to increase at four times
the rate for other occupations. Unfortunately, today's high school
students on average lag well behind their European and Asian
counterparts in math and science, and NAEP studies suggest that more
than 82 percent of 12th graders are not proficient in science. To
maintain U.S. technological leadership, the Department of Education
must do more to improve teacher quality in math and science and to
provide incentives for all students--including underrepresented
groups--to pursue degrees in these fields.
ACS is encouraged by the Department of Education's recent
Mathematics and Science Initiative, which is aimed at reversing
``waning federal attention to mathematics and science education'' in
recent decades. ACS has long supported a key goal of this initiative:
to increase the number of science and math teachers who are well
trained in the subjects they teach. Because research shows that subject
knowledge is critical to effective teaching, it is alarming that nearly
half of all science teachers did not major or minor in the field they
are teaching.
We commend Congress for seeking to improve teacher quality and
student achievement in K-12 math and science education by establishing
the Department of Education's Math and Science Partnership program in
the No Child Left Behind Act. This program, which is the sole source of
dedicated math and science funding at the Department, was authorized at
$450 million. Following scant funding in fiscal year 2002, we applaud
Congress for boosting appropriations to $100 million in fiscal year
2003--a level at which the program becomes viable by allowing the
advancement of merit-based partnerships across all states. ACS urges
Congress to work toward the authorized level by funding the program at
$200 million in fiscal year 2004. Increased investment will enable the
types of innovative partnerships between school districts, university
science and engineering departments, businesses, and educational
organizations that can produce real gains in student achievement. We
believe that partnerships that advance long-term, content-based
professional development should receive priority in this program.
ACS recognizes that economic incentives can help draw students and
provide opportunities for careers in math and science, including the
teaching field. ACS supports the administration's proposal to increase
the level of loan forgiveness from $5,000 to $17,500 for elementary and
secondary education math and science teachers who teach in high need
areas. Also, to provide graduate and doctoral students with enhanced
fellowship opportunities, we support increased funding for the Graduate
Assistance in Areas of National Need program. This program provides
fellowships to assist graduate students with excellent records who
demonstrate financial need and pursue the highest degree available in a
field designated as an area of national need, including science.
In 20 to 30 years, the United States will be a majority minority
country. We must redouble our efforts to ensure that the science and
engineering educational and professional fields adequately reflect
these changing demographics. To that end, the Society strongly supports
the Department's Minority Science and Engineering Improvement program.
This program, which provides grants to predominately 2- and 4-year
minority-serving institutions, aims to significantly increase the
number of underrepresented ethnic minorities, particularly minority
women, pursuing science and engineering careers. The program received
$8.5 million in fiscal year 2003, but additional funding is needed to
reach the larger population necessary to achieve real gains in this
area.
All students need the chance to succeed in an increasingly global
and technology-driven society. ACS looks forward to working with
Congress and the administration to improve teaching and learning in
math and science.

______

Prepared Statement of the United Tribes Technical College

Summary of Request.--For 34 years United Tribes Technical College
(UTTC) has been providing postsecondary vocational education, job
training and family services to Indian students from throughout the
nation. Our request for fiscal year 2004 funding for tribally
controlled postsecondary vocational institutions as authorized under
Carl Perkins Vocational and Applied Technology Act is:
--$8 million under Section 117 of the Perkins Act, which is $1
million over the fiscal year 2003 enacted level. This funding
is essential to our survival, as we receive no state-
appropriated vocational education monies.
--Ensure that the provision in the fiscal year 2002 and 2003 Labor-
HHS-Education Appropriations Acts that waived the regulatory
requirement that we utilize a restricted indirect cost rate is
continued.
--Funding for renovation of our facilities, many of which are
original to the Fort Abraham Lincoln army installation. A
recent study commissioned by the Department of Education shows
a facility need for UTTC of $49 million.
Restricted Indirect Cost Issue.--The fiscal year 2002 and fiscal
year 2003 Labor-HHS-Education Appropriations Act provided that
notwithstanding any law or regulation, that Section 117 Perkins
grantees are not required to utilize a restricted indirect cost rate.
We thank you for taking this action, and ask that it be continued in
the fiscal year 2004 Act.
In 2001, the Department of Education, for the first time, directed
Indian grantees (both Sec. 116 and 117 grantees) to apply a
``restricted indirect cost rate'' to their grants. This means each
tribal grantee must obtain another indirect cost rate--exclusively for
its Perkins Act grant--from its cognizant federal agency (which in most
cases is the Inspector General for the Department of the Interior.)
The Department gave two reasons for applying a restricted rate to
these Perkins Act Indian programs: (1) The 1998 Amendments to the
Perkins Act (Sec. 311(a)) prohibits the use of Perkins Act grant funds
to supplant non-federal funds expended for vocational/technical
programs. This ``supplement, not supplant'' limitation previously
applied to State grants, only; and (2) A long-standing DoEd regulation
(promulgated years before the 1998 Perkins Amendments) automatically
applies the restricted indirect cost rate requirement to any DoEd grant
program with a ``supplement, not supplant'' provision.
UTTC has no quarrel with the bases and objectives of the
``supplement, not supplant'' rule and seeks no change to this statutory
provision. The primary targets of this rule are States and possibly
local government entities that run vocational education programs with
State or local funds.
By contrast, however, UTTC has little or no ability to violate this
rule, as we have no source of non-federal funds to operate vocational
education programs. Unlike States, we have no tax base and no source of
non-federal funds to maintain a vocational education program. We depend
on federal funding for our vocational/technical education program
operations. Despite our inability to violate the supplanting
prohibition, we are, nonetheless, being disadvantaged by a DoEd
regulation intended to enforce the prohibition against States who do
have the ability to supplant.
--Impact of new requirement on grantees.--Under DoEd regulations, a
``restricted indirect cost rate'' makes unallowable certain
indirect costs that are considered allowable by other federal
programs. Primarily, these are costs that DoEd believes the
grantee would otherwise incur if it did not receive a Perkins
grant, such as the cost of the grantee's chief officer and
heads of departments who report to the CEO, as well as the
costs of maintaining offices for these personnel.
Prohibiting the Perkins grant from contributing its appropriate
share to the grantee's indirect cost pool will most likely mean that
other federal programs operated by the grantee would be expected to
pick up a great share of the indirect cost pool. This outcome may well
result in objections from the other program agencies that do not want
to bear costs properly attributable to the Perkins grant.
We are caught between conflicting federal agency requirements and
will find ourselves unable to recover the necessary share of indirect
costs attributable to each of the federal programs we operate.
United Tribes Technical College: Unique Inter-tribal Educational
Organization.--Incorporated in 1969, United Tribes Technical College is
the only inter-tribally controlled campus-based, postsecondary
vocational institution for Indian people. We are chartered by the five
tribes in North Dakota and operate under an Indian Self-Determination
contract with the BIA. This year we enrolled 645 students from 44
tribes and 17 states. Our hope is to serve 2,000 adult students by the
year 2008.
The majority of our students are from the Great Plains states that,
according to the 1999 BIA Labor Force Report, has an Indian reservation
jobless rate of 71 percent. UTTC is proud that we have an annual
placement rate (placement in jobs or in higher education) of 90
percent. In addition, we serve 147 children in our pre-school programs
and 148 children in our Theodore Jamerson elementary school, bringing
the population for whom we provide direct services to 940.
UTTC Course Offerings.--We offer 14 vocational/technical programs
and award a total of 24 two-year degree and one-year certificates. We
are accredited by the North Central Association of Colleges and Schools
and we were re-accredited in 2001 for the longest time allowable--10
years or until 2011--and with no stipulations.
We are very excited about the recent additions to our course
offerings, and the relevance they hold for Indian communities. These
new programs are: Injury Prevention; On-Line Education; Nutrition and
Food Services; Tribal Government Management, and Tourism.
Injury Prevention.--Through our Injury Prevention Program we are
addressing the injury death rate among Indians, which is 2.8 times that
of the total U.S. population. We received assistance through the IHS to
establish the only degree granting Injury Prevention program in the
nation. Injuries are the number one cause of mortality among Native
people for ages 1-44 and the third for overall death rates. IHS spends
more than $150 million annually for the treatment of non-fatal
injuries, and treatment of injuries is the largest expenditure of IHS
contract health funds (IHS fiscal year 2004 Budget Justification).
--On-Line Education.--We are bridging the ``digital divide'' by
providing web-based education and Interactive Video Network
courses from our North Dakota campus to American Indians
residing at other remote sites, including the Denver Indian
community, and plan to serve rural-based Indian tribes.
Training is currently provided in the areas of Early Childhood
Education and Computer Literacy. By the year 2005, students
will be able to access full degree programs in Computer
Technology, Injury Prevention, Health Information Technology,
Early Childhood Education, and Office Technology, and others
from these remote sites. UTTC is seeking accreditation to offer
On-Line degree programs.
High demand exists for computer technicians. In the first
year of implementation, the Computer Support Technician program
is at maximum student capacity. In order to keep up with
student demand, UTTC will need more classroom space, computers
and associated equipment, and instructors. Our program includes
all of the Microsoft Systems certifications that translate into
high income earning potential for graduates.
--Nutrition and Food Services.--UTTC will meet the challenge of
fighting diabetes in Indian Country through education. As you
know, the rate of diabetes is very high in Indian country, with
some tribal areas experiencing the highest incidence of
diabetes in the world. About half of Indian adults have
diabetes (Diabetes in American Indians and Alaska Natives, NIH
Publication 99-4567, October, 1999).
We offer a Nutrition and Food Service Associate of Applied
Science degree to increase the number of American Indians with
expertise in human nutrition and dietetics. Currently, there
are only a handful of Indian professionals in the country with
training in these areas. Future improvement plans include
offering a Nutrition and Food Service degree with a strong
emphasis on diabetes education and traditional food
preparation.
We have also established the United Tribes Diabetes Education
Center to assist local Tribal communities and UTTC students and
staff in decreasing the prevalence of diabetes by providing
educational programs, materials, and training. UTTC has
published and made available tribal food guides to our on-
campus community and to tribes.
--Tribal Government Management/Tourism.--Another of our new programs
is tribal government management designed to help tribal leaders
be more effective administrators. We continue to refine our
curricula for this program.
A newly established education program is tribal tourism
management. UTTC has researched and developed core curricula
for the tourism program with which we are partnering with three
other tribal colleges (Sitting Bull, Fort Berthold, and Turtle
Mountain). The development of the tribal tourism program was
well timed to coincide with the national Lewis and Clark
Bicentennial this year. As you may know, Lewis and Clark and
their party spent one quarter of their journey in North Dakota.
UTTC art students were commissioned by the Thomas Jefferson
Foundation to create historically accurate reproductions of
Lewis and Clark-era Indian objects using traditional methods
and natural materials. Our students had partners in this
project including the National Park Service and the Peabody
Museum at Harvard University. The objects made by our students
are now part of a major exhibition in the Great Hall at
Monticello about the Lewis and Clark expedition.
Job Training and Economic Development.--UTTC is a designated
Minority Business Center serving Montana and the Dakotas. We also
administer a Workforce Investment Act program and an internship program
with private employers.
Economic Development Administration funding has enabled UTTC to
open a ``University Center.'' The Center will help with tribal economic
development. Most states have such centers. Ours is the first such
tribal center.
Department of Education Study Documents our Facility/Housing
Needs.--The 1998 Vocational Education and Applied Technology Act
required the U.S. Department of Education to study the facilities,
housing and training needs of our institution. That report, conducted
for the Department by the American Institutes for Research, was
published in November, 2000 (``Assessment of Training and Housing needs
within Tribally Controlled Postsecondary Vocational Institutions,
November 2000, American Institute of Research'') The report identified
the need for $16.6 million for the renovation of existing housing and
instructional buildings ($8 million if some existing facilities are
converted to student housing) and $30 million for the construction of
housing and instructional facilities.
UTTC continues to identify housing as its greatest need. We have a
huge waiting list of students some who wait from one to three years for
admittance. New housing must be built to accommodate those on the
waiting list as well as to increase enrollment. Enrollment for the
2002-2003 academic year has increased by 31 percent. In order to
accommodate the enrollment increase, UTTC partnered with local renters
and the Burleigh County Housing Authority. Approximately 40 students
and their dependents were housed off campus. Increased enrollment,
while desirable, also presents challenges for transportation,
cafeteria, maintenance and other services.
UTTC is building a new 86-bed single-student dormitory on campus.
We formed a strategic alliance with the Departments of Education and
Agriculture, the American Indian College Fund, the Shakopee Mdwekanton
Sioux Tribe and other sources to build the dormitory. The new dorm will
help us address our housing shortage. Existing housing must be
renovated to meet local, state, and federal safety codes. In the very
near future, some homes will have to be condemned which will mean lower
enrollments and fewer opportunities for those seeking a quality
education.
Classroom and office space are at a premium. We have literally run
out of space. This means that we cannot expand its course offerings to
keep up with job market demands. Most offices and classrooms that are
being used are quite old and are not adequate for student learning and
success. We were able to piece together three sources of funds (EDA,
USDA, DOEd) to raise $1 million to renovate a building to create a new
student life and technology center.
Thank you for your consideration of our request. We cannot survive
without the basic vocational education funds that come through the
Department of Education.

______

Prepared Statement of the American Indian Higher Education Consortium

Mr. Chairman and Members of the Subcommittee, on behalf of this
nation's 34 Tribal Colleges and Universities (TCUs), which comprise the
American Indian Higher Education Consortium (AIHEC), thank you for the
opportunity to share our fiscal year 2004 funding requests for programs
within the Department of Education, and the Department of Health and
Human Services--Head Start program.
This statement will cover two areas: (a) background on the tribal
colleges, and (b) justifications for our funding requests.

BACKGROUND ON TRIBAL COLLEGES

The Tribal College Movement began in 1968 with the establishment of
Navajo Community College, now Dine College, in Tsaile, Arizona. A
succession of tribal colleges soon followed, primarily in the Northern
Plains region. In 1972, the first six tribally controlled colleges
established AIHEC to provide a support network for member institutions.
Today, AIHEC represents 34 Tribal Colleges and Universities located in
12 states, begun specifically to serve the higher education needs of
American Indian students. Collectively, these institutions serve 30,000
full- and part-time students from over 250 Federally recognized tribes.
The vast majority of TCUs are accredited by independent, regional
accreditation agencies and like all institutions of higher education,
must undergo stringent performance reviews on a periodic basis. In
addition to college level programming, TCUs provide much needed high
school completion (GED), basic remediation, job training, college
preparatory courses, and adult education. Tribal colleges fulfill
additional roles within their respective reservation communities
functioning as community centers, libraries, tribal archives, career
and business centers, economic development centers, public-meeting
places, and child care centers. Each TCU is committed to improving the
lives of students through higher education and to moving American
Indians toward self-sufficiency.
Tribal colleges provide access to higher education for American
Indians and others living in some of this nation's most rural and
economically depressed areas. These institutions, chartered by their
respective tribal governments, were established in response to the
recognition by tribal leaders that local, culturally based education
institutions are best suited to help American Indians succeed in higher
education. TCUs combine traditional teachings with conventional
postsecondary courses and curricula. They have developed innovative
means to address the needs of tribal populations and are successful in
overcoming long-standing barriers to higher education for American
Indians. Since the first tribal college was established on the Navajo
reservation, these vital institutions have come to represent the most
significant development in the history of American Indian higher
education, providing access to under-represented students and promoting
achievement among students who may otherwise never have known
postsecondary education success.
Despite their remarkable accomplishments, tribal colleges are the
most poorly funded institutions of higher education in the country.
Chronically inadequate funding remains the most significant barrier to
their success. Funding for basic institutional operations of 24
reservation-based colleges is provided through Title I of the Tribally
Controlled College or University Assistance Act (Public Law 95-471).
Funding under the Act was first appropriated in 1981 and is still, over
20 years later, less than two-thirds of its authorized level of $6,000
per full-time Indian student. In fiscal year 2002,\1\ these colleges
received $3,916 per full-time equivalent Indian student. While
mainstream institutions have a foundation of stable state tax support,
TCUs must rely on annual appropriations from the Federal government for
their basic institutional operating funds. Because TCUs are located on
Federal trust territories, states have no obligation to fund them even
for the non-Indian state-resident students who account for
approximately 20 percent of TCU enrollments. Yet, if these same
students attended any other public institution in the state, the state
would provide basic operating funds to the institution.
---------------------------------------------------------------------------
\1\ As of this writing, the Bureau of Indian Affairs (BIA) has not
released the per Indian Student Count (ISC) funding level for fiscal
year 2003.
---------------------------------------------------------------------------
Inadequate funding has left many of our colleges with no choice but
to operate under severely distressed conditions. Many colleges are
still housed in surplus trailers; cast-off buildings; and facilities
with crumbling foundations, faulty wiring, and leaking roofs.
Sustaining quality academic programs is a challenge without a reliable
source of facilities maintenance and construction funding.
As a result of more than 200 years of Federal Indian policy--
including policies of termination, assimilation and relocation--many
reservation residents live in abject poverty comparable to that found
in Third World nations. Through the efforts of tribal colleges,
American Indian communities receive services they need to reestablish
themselves as responsible, productive, and self-reliant.

JUSTIFICATIONS

Higher Education Act
The Higher Education Act Amendments of 1998 created a separate
section within Title III, Part A, specifically for the nation's Tribal
Colleges and Universities (Section 316). The Aid for Institutional
Development programs, commonly known as the Title III programs, support
institutions that enroll large proportions of financially disadvantaged
students and have low per-student expenditures. TCUs clearly fit this
definition as they are among the most poorly funded institutions in
America, yet they serve some of the most impoverished areas of the
country. The President's proposed increase for strengthening developing
institutions programs under Higher Education Act was based on the
fiscal year 2002 budget recommendations and not on the enacted fiscal
year 2003 appropriations for these programs. The fiscal year 2003
Omnibus Appropriations bill includes $23 million for the tribal college
Title III programs. Therefore, if enacted, the President's fiscal year
2004 Budget recommendation of $19 million would not result in an
increase at all, but rather a $4 million decrease in these vital
program funds. We strongly urge the Subcommittee fund section 316 at
$27 million, an increase of $4 million over fiscal year 2003 and $8
million over the President's request, and we ask that report language
included in fiscal year 2003 be restated to clarify that funds not
needed to support continuation grants or new planning or implementation
grants be available for facilities renovation and construction grants.
The importance of Pell grants to our students cannot be overstated.
Department of Education figures show that at least half of all Tribal
College students receive Pell grants, primarily because student income
levels are so low and our students have far less access to other
sources of aid than students at 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 people gain access to higher education and become
active, productive members of the workforce. We urge Congress fund this
critical program at the highest possible level.

Carl D. Perkins Vocational & Applied Technology 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 Crownpoint Institute of Technology in Crownpoint, New
Mexico. We urge Congress fund this program at $8 million and continue
the language included in fiscal years 2002 and 2003 stating that
Section 117 Perkins grantees need not utilize restricted indirect cost
rate.
The President's fiscal year 2004 budget proposes the elimination of
the Native American Program Section 116, which reserves 1.25 percent of
appropriated funding to support Indian vocational programs. We strongly
urge Congress continue this program, which is vital to the survival of
vocational education programs being offered at TCUs.

Greater Support of Indian Education Programs Under ESEA
American Indian Adult and Basic Education.--This section supports
adult 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 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, learn to read.
According to a 1995 survey conducted by the Carnegie Foundation for the
Advancement of Teaching, 20 percent of the participating students had
completed a tribal college GED program before beginning higher
education classes at the tribal college. At some schools, the
percentage is even higher. Clearly, the need for basic educational
programs is tremendous, and TCUs need funding to support these crucial
activities. Tribal colleges respectfully request that Congress
appropriate $5 million to meet the ever-increasing demand for basic
adult education services.
American Indian Teacher Corps.--American Indians are severely
under-represented in the teaching and school administrator ranks
nationally. These competitive programs, aimed at producing new American
Indian teachers and school administrators for schools serving American
Indian students, support the recruitment, training, and in-service
professional development programs for Indians to become effective
teachers and school administrators, and in doing so excellent role
models for Indian children. We believe that the TCUs are the ideal
catalysts for these initiatives because of our current work in this
area and the existing articulation agreements TCUs hold with 4-year
degree awarding institutions. We request Congress support these
programs at $10 million and $5 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 Child, Youth
and 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. New
graduates of these programs can help meet the mandate that 50 percent
of all program teachers earn an associate degree in Early Childhood
Development or a related discipline by 2003. One clear impediment to
the on-going success of this partnership program is the decrease in
discretionary funding being directed to the TCU/Head Start partnership.
In fiscal year 1999, the first year of the program, six TCUs received
awards; in fiscal year 2000, seven additional colleges received 3-year
grant awards; in fiscal year 2001, new grants were extended to be 5-
year grants but only $360,000 was made available for the program,
allowing only three additional TCUs to receive grants; in fiscal year
2002 no additional grants were awarded. The extension of the duration
for new grants was a welcome change. We are hopeful that the current
(1999 and 2000 grantees) will be able to extend their existing grants
to a total of 60 months. The President's budget includes a request of
$6,815,570,000 for Head Start Programs. We request Congress direct the
Head Start Bureau to designate a minimum of $5 million for the TCU/Head
Start Partnership program, to allow current grantees to extend their
programs for two additional years and to ensure that this critical
program can be continued and be expanded so that all TCUs might offer
Head Start partnership programs.

CONCLUSION

Tribal colleges are bringing education to thousands of American
Indians. The modest Federal investment in the tribal colleges has paid
great dividends in terms of employment, education, and economic
development, and continuation of this investment makes sound moral and
fiscal sense. We very much need help to sustain and grow our programs
and achieve our missions.
Thank you again for this opportunity to present our funding
requests. We respectfully ask the Members of this Subcommittee for
their continued support of TCUs and full consideration of our fiscal
year 2004 appropriations request.

______

Prepared Statement of the Crownpoint Institute of Technology,
Crownpoint, NM

This testimony addresses appropriations for Section 117 of the Carl
D. Perkins Vocational Education Act, ``Tribally Controlled Vocational
and Technical Institutions.''
On behalf of the Crownpoint Institute of Technology (CIT), I thank
this Subcommittee for appropriating operational funds to Section 117 in
the amount of $7 Million for fiscal year 2003. Because this
appropriation is forward funded, CIT will not know its allocation under
it until September 2003. From the fiscal year 2002 appropriation of
$6.5 Million, CIT received $3,663,331. In addition, CIT extends it
deepest gratitude to this Subcommittee for the accompanying
appropriations language that addresses the Department of Education's
use of restricted indirect cost rates to vocational grants under
Section 117. The Subcommittee's language rectifies a serious problem
wherein essential vocational education services were disallowed by the
Department through the application of extraneous regulations. CIT
endeavors to realize a long range solution to the problem of restricted
indirect cost through the reauthorization of the law. The
reauthorization is expected in 2003, but it may not occur until later.
CIT urges this Subcommittee to continue the prohibition of restricted
indirect cost by the Department if the authorizing statute is not
reauthorized in 2003. CIT also strives to have other problems
surrounding the Departmental allocation of appropriated funds corrected
through the reauthorization.
CIT is the only postsecondary vocational educational institution on
the Navajo Nation reservation. For academic year 2002-03, CIT's
enrollment is 429 headcount: 517 Indian Student Count/Full Time
Equivalency (ISC/FTE). CIT is open to all Indian and non-Indian
applicants alike who meet admissions criteria, but the preponderance of
applicants are of course Navajo Nation young adults who traditionally
have not had access postsecondary vocational education due to
geographic, cultural and economic isolation from mainstream
postsecondary educational opportunities.
The Navajo reservation is an immense and remote 26,897 square miles
extending into three States: Arizona, New Mexico and Utah. This
reservation is 2,810 square miles larger than the State of West
Virginia. The driving distance across the reservation is approximately
nine hours. Although distant from major towns, Crownpoint is a major
reservation activity center. CIT students come from throughout the
reservation as well as from the towns of Gallup, Cruet, Continental
Divide, Fruitland, Kirtland, Mentmore, Rehobeth (all in New Mexico),
Durango, Colorado, White Mesa, Utah and the Tohono O'odham and Hopi
Reservations in Arizona. Approximately 30 percent of CIT students are
from the Arizona side of the Reservation.
The population of the Navajo Nation is 225,298 (U.S. Census 2000).
The Navajo Nation is one of the very few tribes with an extant native
language. Nearly all Navajo citizens raised on the reservation not only
speak the Navajo language but also use it in their daily lives. On
trust land alone, 106,432 Navajo citizens are age 18 and over. The
decennial tribal population increase is 14 percent, as compared to only
8 percent for mainstream America. The median Native American population
age is 27.4 years, eight years younger than the median age for
mainstream America. Approximately 10,000 Navajo students graduate from
area high schools each year. The average CIT student age is 26, with
the actual age range being 18 to 64.
It is essential that appropriators understand the immense
population difference that exists among Indian tribes. In contrast to
Navajo, the sixteen tribes in the States of Montana, North Dakota and
South Dakota have a combined population of 72,835. The Navajo Nation
population is more than three-fold the population of these sixteen
tribes. These sixteen tribes each have one tribal college available to
their citizens on significantly smaller land bases. The Navajo Nation
has only one other college, Dine', based in Tsaile, Arizona with eight
small branch campuses throughout the reservation. Of the entire Navajo
population, only 4.66 percent of high school graduates go on to achieve
a bachelor's degree. Only 2 percent achieve Masters degrees, and less
than one-half percent earn doctorates. CIT has proven to offer a
realistic educational alternative that equips young adults with
meaningful employment skills as well as placing graduates in career
track employment.
In order to do so, CIT has broader infrastructure responsibilities.
CIT is campus-based with 153,468 square feet of facilities. The CIT
campus includes state of the art classrooms and Veterinary Clinic,
modular administrative buildings, library, efficiency apartments,
dormitory, married student housing and cafeteria. CIT has no recreation
facility. CIT has a higher proportion of students who have
developmental education needs, and longer distances to transport
students. Despite many challenges, CIT earns achievements. In 2003, CIT
received an excellence award from the U.S. Department of Agriculture
for the second time for sincere commitment to student outcomes, one of
only eight such awards nationally. Also in 2003, the CIT Culinary Arts
Program students won the Hilton Hotels-sponsored creative culinary art
award.
CIT continues to increase its student housing capacity with
assistance from the Navajo Nation HUD. In 2003, another sixteen married
and family student units were completed. Students with dependent
families are among those most in need of acquiring employment skills.
CIT opened a new 75 unit efficiency housing for 150 students, but at
the same time had to temporarily close its 110 unit dormitory for
safety-related repairs to be completed in a year. Each year, CIT has
averaged a waiting list of approximately 200 otherwise qualified
students due to residential hosing limitations. Rental housing is
scarce in the town of Crownpoint.
Daily commuting from most parts of the reservation is hindered by
poor roads, harsh weather and vast distance, although some students do
commute daily up to 70 miles each way. CIT has an eight-year average
student retention rate of 95 percent, and an average job placement rate
of 86 percent over that same period. Due to the Department's
discretionary restrictions, CIT's student job placement office is
understaffed. As a consequence, the job placement average has dropped
to 75 percent. With additional resources, CIT could increase student
job placement even further.
CIT is fully-accredited by North Central Association of Colleges
and Schools as a vocational educational institution. CIT offers two-
year Associate of Applied Science degrees in seven disciplines:
Accounting, Administrative Assistant, Applied Computer Technology,
Environmental Technology and Natural Resources, Law Advocate, Legal
Assistant and Veterinary Technician. CIT offers sixteen vocational
certificate programs: Accounting, Administrative Assistant, Applied
Computer Technology, Automotive Technology, Building Maintenance,
Carpentry, Culinary Arts, Electrical Trades, Environmental Technology
and Natural Resources, Law Advocate, Legal Assistant, Nursing
Assistant, Veterinary Assistant, Small Business Development (new),
Commercial Drivers License and Computer Aided Drafting. In the upcoming
year, CIT is ready to offer Alternative Energy to assist the many
reservation areas that still do not have access to electricity and
possibly never will.
In May 2002, CIT graduated 208 students. This reflects an increase
of 25 percent in the number of graduates over the previous year, which
was 167 graduates. Approximately 80 percent of CIT completions not
continuing their educations had secured employment placement by the
time they graduated. Of this number, 86 percent secured full-time
employment with the remaining 14 percent accepting seasonal jobs. 54
percent secured employment on-reservation and 46 percent off-
reservation. In addition, the region's economy is comprised
significantly of self-employed ranchers who by definition are not
placed in employment. Several CIT Veterinary students are self-employed
ranchers who improve their livelihoods through knowledge and skills
learned in the CIT Veterinary Program. Students continuing their
educations are considered positive terminations.
Of the above graduating classes (375 students), the CIT Placement
Office successfully tracked and job placed 82 percent (308). 92 CIT
graduates (30 percent) continued their educations. Funding limitations
inhibit the capability of the CIT Placement Office to track and place
100 percent, but indicators over time are that some graduates who do
not maintain contact with the Placement Office after graduation may do
so because they have no need for job placement services. In other
words, they find employment on their own. Of those graduates utilizing
CIT placement services the following were placed in jobs or continued
their education: Accounting 10 of 10 (100 percent): Administrative
Assistant 30 of 43 (70 percent): Applied Computer technology 24 of 44
(55 percent): Automotive Technology 19 of 20 (95 percent): Building
Maintenance 15 of 18 (83 percent): Carpentry 17 of 20 (85 percent):
Culinary Arts 9 of 12 (75 percent): Electrical Trades 20 of 22 (91
percent): Environmental Technology and Natural Resources 17 of 23 (74
percent): Legal Assistant 5 of 5 (100 percent): Law Advocate 5 of 8 (63
percent): Nursing Assistant 34 of 52 (65 percent): Veterinary Assistant
10 of 13 (77 percent): Commercial Drivers License 16 of 18 (89
percent). Other variables affect employment success rates. For example,
Nursing Assistants are in high demand. However, due to housing scarcity
and transportation obstacles, several CIT Nursing Assistant graduates
were unable to accept jobs offered.
Of all CIT graduates, the average entry level wage is $17,160 per
annum. CIT's Commercial Drivers License (CDL) program graduates earn
the highest wage at $16 to $18 an hour, or $33,280 to $37,440 annually
if employment remains stable. The next highest paid entry-level wages
average by vocational program are: Veterinary Technician/Assistant
$23,920: Legal Advocate/Assistant $21,320: Electrical Trades $20,280:
Automotive and Environmental Technology, both at $19,760. Even the
modest entry-level wages can be deceiving as to the wage once
established in that profession. For example, an electrical apprentice
will start at $9/$11 hourly. This wage will more than double to $22/$28
hourly in 3\1/2\ to 4 years.
For Associate degree students continuing their educations, CIT has
articulation agreements with University of New Mexico Albuquerque and
Gallup, New Mexico State, Ft. Lewis College, University of Arizona and
Northern Arizona University. The University of Pennsylvania and Iowa
State University interns participate in CIT's Elk Management Program.
In addition, CIT partners this program with the Tohono O'odham Tribe of
Arizona where livestock is critical to subsistence. In the Tohono
O'odham partnership, CIT addresses the very real problem of migratory
livestock disease transmission from across the Mexico border.
Partnering with Iowa State and Colorado State Universities, CIT
offers an elk and cattle artificial insemination program for the
region's ranchers. In response to overgrazing, the Elk Management
Program has proven to be a viable alternative livestock offering a
three-fold return over traditional livestock.
Less than four year ago, CIT did not yet have its own internet
access. With the generous assistance of Section 117 appropriations from
this Subcommittee, CIT is achieving state of the art technology with a
now fully-operational Distance Learning capability. Partnering with
Northern Arizona University and Window Rock Unified School District,
CIT's vocational offerings will now expand to high school students in
Two plus Two Programs in the farthest reaches of the reservation. Also,
NAU programs can now be brought to CIT students, and CIT faculty can
partake of professional development without the time and expense of
leaving the campus. In the extreme geographic isolation of the
reservation, distance learning capability holds the promise of enabling
even more educational opportunities on a par with those more readily
available in urban and suburban America. In order for CIT graduates to
be competitive for America's jobs, they must be able to acquire equal
employability skills.
In an average lifetime of employment, CIT graduates will return to
the Federal Government the cost of its investment many times over. Each
employed graduate pays an average of $2,576 of their earnings to
federal taxes in the first year of employment alone. Actual taxes paid
differ according to a number of variables, but wage earnings and
resultant tax contributions will generally continue over at least
thirty years. CIT lacks institutional resources to track all of its
graduates over the past two decades, but of those tracked 62 percent
are employed in private industry and do not rely directly or indirectly
on federal appropriations for jobs.
While CIT's CDL program graduates can earn high wages, it is an
extremely limited offering. An actual tractor-trailer must be utilized
and class size limit is four students per session. Strict State
licensing standards require a paved training lot of over 300 feet in
either direction. Until now, CIT offered the CDL course on it overflow
campus parking lot. However, the Navajo Nation's new Empowerment
Building for Temporary Assistance to Needy Families (TANF) on the CIT
campus will now utilize this space. The Empowerment Center fills a
previously unmet need and will house CIT's Adult Basic Education
Classroom for its 172 students, serve 500 Eastern Navajo area families
and employ 32 staff. This will fill the overflow parking lot to
capacity. Importantly, this same parking lot also served as the
training ground for Defensive Driving training for 102 Head Start bus
drivers from throughout the area. Now, neither the CDL nor the Head
Start bus driver training courses will have a training lot. Unless
funding is found for a replacement training lot, this highly successful
CDL program will have to be discontinued.
As is prevalent throughout the economically disadvantaged in Native
America, many high school graduates are not equipped with skills
necessary to enter postsecondary education. To rectify this deficiency
among some CIT applicants, CIT will hold its first summer session of
Developmental Studies in 2003. This session will run for five weeks for
approximately 150 entering students. Participating students will have
the opportunity to achieve readiness skills by the start of the fall
semester. To maximize the benefit to the community, CIT plans to
simultaneously conduct five one week Computer and Math Camps for K-12.
CIT continually strives to strengthen its programs. In 2003 CIT
will enhance articulation agreements with San Juan and Dine Colleges
through standardization of course offerings, particularly in the math
and sciences. Through such measures CIT can more effectively ascertain
student achievement and modify course offerings as necessary. This will
increase access to continued education at four-year institutions for
CIT graduates with the goal to further their educations. CIT will
require additional resources to retain adjunct faculty in order to
achieve this goal.
On behalf of all the CIT students whose quality of life has been
immensely improved by Section 117 appropriations; I thank this
Subcommittee for all of its assistance. CIT still faces the challenges
described above, and will deeply appreciate and maximally benefit from
any increases possible from this Subcommittee.

______

RELATED AGENCIES

Statement of the National Minority Public Broadcasting Consortia
--National Asian American Telecommunications Association
--National Black Programming Consortium
--Latino Public Broadcasting Project
--Native American Public Telecommunications
--Pacific Islanders in Communications
The National Minority Public Broadcasting Consortia (Minority
Consortia) submits this statement on the fiscal year 2006 appropriation
for the Corporation for Public Broadcasting (CPB). Our primary missions
are to bring a significant amount of programming from our communities
into the mainstream of PBS and public broadcasting. In summary, we ask
the Committee to:
--Reject the Administration's proposal to end advance funding of the
Corporation for Public Broadcasting
--Reject the Administration's proposal to divert $100 million of
already appropriated fiscal year 2004 funds to digital
conversion and satellite interconnection
--Recommend at least $410 million for CPB for fiscal year 2006, a $20
million increase over fiscal year 2005
--Encourage CPB to increase its efforts for diverse programming with
commensurate increases for minority programming and the
Minority Consortia
--Support CPB's request of $60 million for digital conversion, but
require that some of it be made available to independent
producers, not only to stations
We are taken aback at the Administration's proposals regarding
public broadcasting, and can only conclude that they are out of touch
with the American public and with Congress when it comes to
appreciating the education, services, and entertainment brought to us
by public broadcasting. The quality gap between network television and
public television has never been wider, and it continues to grow with
each new ``reality'' show. Administration proposals to end forward
funding of CPB, and to rescind funds, and to divert already
appropriated funds would dramatically reduce the development of
programming for public broadcasting.
Advance Funding.--We strongly oppose the Administration's proposal
that the advance funding for CPB be eliminated, a proposal that would
stop CPB funding for two years. We appreciate that Congress has
rejected this proposal each of the last two years and that the fiscal
year 2004 budget resolution assumes that CPB will remain advance
funded. Reasons to continue advance funding for CPB include:
--The production of programming for public broadcasting usually takes
several years and substantial lead time is needed for planning.
--Public broadcasting programs are supported by multiple funding
sources, and two years advance knowledge of the amount of
federal funding allows CPB to better leverage its federal funds
to bring in other sources of revenue.
--The Minority Consortia administers a significant amount of CPB
programming monies, and elimination of advance funding would
negatively affect our organizations' planning and fundraising
activities.
--Proposed Diversion of fiscal year 2004 CPB Funds.
We are extremely concerned about the Administration's proposal to
divert $100 million of already appropriated fiscal year 2004 CPB funds
($380 million) to digital conversion ($80 million) and satellite
interconnection ($20 million). Such a diversion of funds would wreck
havoc on our organizations and the independent producers that we help
support as well as many radio and television stations. We would be
faced with a 25 percent reduction of CPB funds should Congress approve
this proposal by the Administration.
CPB fiscal year 2006 Appropriation.--We support a fiscal year 2006
federal appropriation for CPB of at least $410 million. This would be a
reasonable, albeit modest, contribution toward our national treasure of
public broadcasting. The debate of the past several years regarding
public television and public radio has highlighted the great esteem in
which they are held.
Public broadcasting, including PBS and NPR, is particularly
important for our nation's growing minority and ethnic communities.
While there is a niche in the commercial broadcast and cable world for
quality programming about our communities and our concerns, it is in
the public broadcasting industry where minority communities and
producers are more able to bring quality programming for national
audiences. Additionally, public television and radio is universally
available.
Digital Conversion Assistance.--We support CPB's request for $60
million for digital conversion funding for CPB.
With stations able to broadcast on multiple channels, there will be
a need for a tremendous amount of new, quality public broadcasting
programming. There are costs involved in the conversion which go beyond
the significant equipment and hardware needs of stations. It will also
take additional money to produce programming for digital broadcast. All
producers face these new, higher costs.
Part of the equation in bringing more high quality diverse
programming to public broadcasting is that independent producers be
able to transition to digital production. Federal funding for digital
conversion should include assistance for independent producers.
The Minority Consortia works closely with CPB. We value our
relationship with President Coonrod and the CPB staff and appreciate
the financial and technical assistance provided to us by that
organization. We do not doubt CPB's commitment to increasing the
diversity of programming on public television and radio but also
believe they can do more with the resources at hand. The oft-stated
commitment of CPB and Congress for increased multicultural programming
combined with six years of funding increases should translate into
significant progress. We urge this Committee to communicate with CPB
about its efforts to bring more quality multicultural programming to
public television.
Thank you for your consideration of our recommendations. We see new
opportunities to increase diversity in programming, production,
audience, and employment in the new media environment, and thank you
for your long time support of our work on behalf of our communities.

______

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, I speak on behalf of over 200 community
radio stations and related organizations across the country. This
includes the new Low Power FM service that has just been authorized by
the FCC. NFCB is the sole national organization representing this group
of stations, which provide service in both the smallest communities and
largest metropolitan areas of this country. Nearly half of our members
are rural stations, and half are minority controlled stations.
In summary, the points we wish to make to this Subcommittee are
that NFCB:
--Requests $410 million CPB for fiscal year 2006, a $20 million
increase over fiscal year 2005 advance appropriation;
--Requests $60 million in fiscal year 2004 for conversion of public
radio and television to digital broadcasting. Also requests $20
million for the Public TV interconnection system;
--Requests that advance funding for CPB is maintained in order to
preserve journalistic integrity and facilitate planning and
local fundraising by public broadcasters;
--Requests report language to ensure that CPB utilizes digital funds
it receives for radio as well as television needs;
--Supports CPB activities in facilitating programming services to
Latino and Native American radio stations;
--Supports CPB's efforts to help public radio stations utilize new
distribution technologies, and requests that the Subcommittee
ensure these technologies are available to all public radio
services, not just those with the greatest resources.
Community radio fully supports $410 million for the Corporation for
Public Broadcasting in fiscal year 2006.--Federal support distributed
through the CPB is an essential resource for rural stations and for
stations serving minority communities. These stations provide critical,
life-saving information to their listeners. Yet they are often in
communities with very small populations and limited economic bases, so
that the ability of the community to financially support the station is
insufficient without federal funds.
In larger towns and cities, sustaining grants from CPB enable
community radio stations to provide a reliable source of noncommercial
programming about the communities themselves. Local programming is an
increasingly rare commodity in a nation dominated by national program
services and concentrated ownership of the media.
For the past 28 years, CPB appropriations have been enacted two
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 federal funds. Most importantly, the
insulation that forward-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 last 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 and satellite radio. We commend these
activities, which we feel provide better service to the American
people, but want to be sure that smaller stations with more limited
resources are not left out of this technological transition. We ask
that the Subcommittee include language in the appropriation that will
ensure funds are available to help the entire public radio system
utilize the new technologies, particularly rural and minority stations.
NFCB commends CPB for the leadership it has shown in supporting and
fostering programming services to Latino stations and Native American
stations. Satelite Radio Bilingue provides 24 hours of programming to
stations across the United States and Puerto Rico, addressing issues of
particular interest to the Latino population. In the same way, American
Indian Radio on Satellite (AIROS) distributes programming for Native
American stations, arguably the fastest growing group of stations.
There are now over 30 stations controlled by and serving Native
Americans, primarily on Indian reservations.
Almost two years ago, CPB funded an historic Summit of Native
American Radio in Warm Springs, Oregon. It was an extremely important
opportunity for Native American stations and producers to strategize
(with each other, and with colleagues from Public Radio and Native
America) on ways to improve radio service to all Native Americans. CPB
funded a similar Summit for Latino Public Radio, which took place this
past September in Rohnert Park, California, home of the first Latino
Public Radio station. These Summits have expanded the circle of support
for Native and Latino Public Radio, and identified projects that will
both improve efficiency among stations through collaborations, and
explore new ways of reaching target audiences.
CPB plays a very important role in the public and community radio
system. They are the convener of discussions on critical issues facing
us as a system. They support research so that we have a better
understanding of how we are serving listeners. And they provide funding
for programming, new ventures, expansion to new listeners, 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 new distribution technologies and media
consolidation. An example of this support is the grant that NFCB
received to update and put our Public Radio Legal Handbook online. This
provides easy to read information to stations about complying with
governmental regulations, so that stations can function legally and use
their precious resources for programming instead of legal fees.
Finally, community radio supports $60 million in fiscal year 2004
for conversion to digital broadcasting by public radio and
television.--It is critical that this digital funding be in addition to
the on-going operational support that CPB provides. The
Administration's proposal that digital money should be taken from the
fiscal year 2004 CPB appropriation would effectively cut stations'
grants by more than 25 percent. This would have a devastating impact
during these hard economic times, when stations are facing cuts from
state and institutional funds at historic levels. And it would come at
a time when the local voices of community and public radio are
especially important, both to notify and support people during
emergency situations and to help communities deal with the loss of
loved ones--things that commercial radio is no longer able to do
because of media consolidation.
While public television's digital conversion needs are more
immediate, the Federal Communications Commission has now approved a
standard for digital radio transmission. We expect that there will be
funds available for radio conversion as well as television conversion.
The initial conversion of radio stations is being concentrated in 13
seed markets. CPB is using some of the previously appropriated digital
funds to help public stations in these markets convert to digital,
conduct additional research on AM radio conversion, and work with radio
receiver manufacturers to build in the capacity to receive a 2nd audio
channel. The development of 2nd audio channels will potentially double
the public service that public radio can provide, particularly to
unserved and underserved communities. This initial funding will only
help a small number of the stations that will ultimately need to
convert or be left behind while the world goes digital.
Community Radio also supports $20 million in fiscal year 2004 for
the public television interconnection system.
Federal funds distributed by 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 of the Department of
Commerce. 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.
We appreciate Congress' direction to CPB that it utilize its
digital conversion fund for both radio and television, and ask that you
ensure that the funds are used for both media. Congress stated, with
regard to fiscal year 2000 digital conversion funds:

``The required (digital) conversion will impose enormous costs on
both individual stations and the public broadcasting system as a whole.
Because television and radio infrastructures are closely linked, the
conversion of television to digital will create immediate costs not
only for television, but also for public radio stations (emphasis
added). Therefore, the Committee has included $15,000,000 to assist
radio stations and television stations in the conversion to
digitalization. . . .'' (S. Rpt. 105-300)

This is a period of tremendous change. Digital is transforming the
way we do things; new distribution avenues like digital satellite
broadcasting and the Internet are changing how we define our business;
concentration of ownership in commercial radio makes public radio in
general and community radio in particular more unique, and more
important as a local voice than we have ever been. Low Power FM
stations are providing new local voices in their communities. Community
radio is providing essential local emergency information, programming
about the local impact of major global events, culturally appropriate
information and entertainment in the language of the native culture,
and help in preserving cultures that are dying out.
During this time, 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 along with larger stations which have
more resources, as we move into a new era of communications.
Thank you for your consideration of our testimony. If the
Subcommittee has any questions, or needs to follow-up on any of the
points expressed above, please contact: Carol Pierson, President and
CEO, National Federation of Community Broadcasters, 1970 Broadway,
Suite 1000, Oakland, CA 94612--Telephone: 510 451-8200--Fax: 510-451-
8208--E-mail: [email protected]
The NFCB is a twenty-eight year old grassroots organization which
was established by and continues to be supported by our member
stations. Large and small, rural and urban, NFCB member stations are
distinguished by their commitment to local programming, community
participation and support. NFCB's 100 Participant members and 100
Associates come from across the United States, from Alaska to Florida;
from every major market to the smallest Native American reservation.
While urban member stations provide alternative programming to
communities that include New York, Minneapolis, San Francisco and other
major markets, rural members are often the sole source of local and
national daily news and information in their communities. NFCB's
membership reflects the true diversity of the American population: 41
percent of members serve rural communities, and 46 percent are minority
radio services.
On community radio stations' airwaves examples of localism abound:
on KWSO in Warm Springs, Oregon, you will hear morning drive programs
in their Native language; throughout the California farming areas
around Fresno, Radio Bilingue programs five stations targeting low-
income farm workers; in Barrow, Alaska, on KBRW you will hear the local
news and fishing reports in English and Yupik Eskimo; in Dunmore, West
Virginia, you will hear coverage of the local school board and county
commission meetings; KABR in Alamo, New Mexico serves its small
isolated Native American population with programming almost exclusively
in Navajo; and on WWOZ you can hear the sounds and culture of New
Orleans throughout the day and night.
In 1949 the first community radio station went on the air. From
that day forward, community radio stations have been reliant on their
local community for support through listener contributions. Today, many
stations are partially funded through the Corporation for Public
Broadcasting grant programs. CPB funds represent under 10 percent of
the larger stations' budgets, but can represent up to 50 percent of the
budget of the smallest rural stations.

______

Prepared Statement of the Medicare Payment Advisory Commission

The Medicare Payment Advisory Commission (MedPAC) requests a budget
appropriation of $9.3 million for fiscal year 2004. This request for a
$1.1 million increase over the Commission's fiscal year 2003
appropriations reflects the increasing need for better understanding of
the policy issues for one of the Congress' highest priorities--and with
more than 40 million beneficiaries costing $250 billion per year--one
of the federal governments largest programs. This budget also funds
increases resulting from higher rent, benefit costs, and new MedPAC
products and services.
Legislative mandate.--MedPAC is authorized under section 1805 of
the Social Security Act (42 U.S.C. 1395 b-6), as added by section 4022
of the Balanced Budget Act of 1997 (Public Law 105-33). The Commission
consists of 17 Commissioners, appointed by the Comptroller General of
the General Accounting Office, who possess expertise in biomedical,
health services, and health economics research and who draw on their
experiences as consumers, providers, employers, and payers. An
executive director, analytic and administrative/operational personnel
staff the Commission. To produce the March, June, and other reports
mandated by legislation, the Commission meets publicly throughout the
year.
MedPAC is a small efficient operation.--The Commission works under
a staffing ceiling of 40 FTEs and outsources 40 percent of its budget
for tasks such as data analysis, programming, printing, editorial work,
and selected research projects to maintain efficiencies. Each year, our
annual appropriations provide the resources necessary to complete the
Commission's required activities, including:
--March Report to the Congress.--This report always includes
recommendations on the appropriate levels of payment for
Medicare providers and policies to address the distribution of
payments within a segment of the market (for example, our March
2003 recommendations to improve payments for certain providers
in rural areas).
--June Report to the Congress.--Previous reports have addressed
issues such as Medicare in rural America, payments for new
technologies, and a variety of other topics. The June 2003
report will address a broad range of policy concerns about
variations in the Medicare program and innovations in
purchasing.
--Reports required by other legislation.--During fiscal years 2002
and 2003, MedPAC issued 15 separate reports to Congress on a
variety of issues as required by the Balanced Budget Refinement
Act and the Benefits Improvement and Protection Act.
--Comments on administrative actions.--MedPAC is required to comment
on payment-related reports that the Secretary submits to the
Congress and other proposed rules issued by the Centers for
Medicare and Medicaid Services. These include comments on CMS's
estimate of the update for physician services, evaluation of
demonstration projects like the Medicare social health
maintenance organizations, and reviews of new payment systems
being phased in for certain types of providers.
MedPAC is expanding its services to meet growing demands for
Medicare policy analysis.--Part of the additional funds we request also
will support other analysis and education provided by the Commission.
On top of our statutorily required work, the Commission staff serve as
critical resources to the Senate Finance, House Ways and Means, and
House Energy and Commerce committees in a variety of ways. Meeting the
growing number and scope of requests for information and analysis from
congressional staff requires increases in staff time and other
resources. While some of these new initiatives will require additional
funding, we expect that distributing many of our future work products
electronically will save federal dollars.
In the 2003 fiscal year, we have stepped up the amount of
assistance provided to congressional staff at the urging of our
authorizing committees, and by extension, stretched our human and
financial resources to projects not specifically mandated in
legislation. Some of these new activities include:
--Congressional briefings.--For example, MedPAC coordinated a series
of weekly briefings for Finance committee staff on the
intricacies of the payment systems. These 90-minute briefings
detail how the payment systems work and what the major policy
concerns are in each sector of the Medicare program. We also
worked with other legislative branch agencies to provide a 2-
day briefing for all personal member and committee health
legislative staff on Medicare, Medicaid, and SCHIP issues.
--Informational memos.--At the request of committee staff or through
our own initiation, we've begun to issue briefing papers to our
authorizing committees' staff on timely issues that synthesize
the facts and present policy considerations. Previous memos
explained Medicare's outlier payment policy for hospital
services and the bankruptcy of National Century Financial
Enterprises (a financier of many health care providers). Future
memos will explain topics such as how Medicare pays for
physician's professional liability premiums and geographic
variation in Medicare spending.
--New tools and other publications.--The staff fulfill many requests
from congressional offices for data on providers' financial
performance, trends in utilization, and beneficiary
characteristics. In June 2003, MedPAC will release a data book
compiling useful facts and figures to serve as a quick
reference for personal member and committee staff. Over time,
the collection of charts in the data book will be complemented
by an expanded web-based data collection on our website.
MedPAC is expanding the scope of its analyses to include emerging
and dynamic policy issues affecting beneficiaries, providers, and
spending.--Historically, the Commission provided the Congress with a
wealth of information about existing payment systems as well as
guidance on the design and implementation of new programs. Since the
Balanced Budget Act, we have recommended annual payment updates for
Medicare providers and provided input and recommendations on
Medicare+Choice, new payment systems for home health, skilled nursing
facilities, psychiatric hospitals, long-term care hospitals, and many
other providers. Beginning with our March 2003 report, we are
highlighting the implications of these recommendations on three
important issues: spending, beneficiaries, and providers.
Along with the increased urgency over Medicare reform and possible
coverage of prescription drugs, there has been a comparable increase in
the information requests submitted to us from the Congress. Commission
staff have further responded, both orally and in writing, to numerous
requests from Congressional staff on a wide variety of topics. Not
including minor requests, Commission staff have filled over 75 direct
requests for information from Congressional staff, involving meetings,
briefings, data, and other substantive analyses.
In completing our mandated reports and providing analytic support
to the Congress, Commission staff have reached out to the public,
interested parties, and the research community for input and to further
public understanding of the Commission's work. Commission staff made
over 50 public presentations to Commissioners as well as presenting to
local, national, and even international audiences. Staff have held more
than 30 meetings with interest groups and regulated parties on a
variety of topics. Finally, staff have worked with health services
researchers and the health policy community to further the Commission's
work and encourage sharing of information that could extend our
research and analytic efforts.
Looking ahead, the Commission sees a growing need for analysis and
education on many emerging and dynamic issues. We are already receiving
requests from Congressional staff to provide them with guidance on a
broad range of issues-some of which will be addressed in our plans for
future analytic work outlined below:
--Outpatient drugs
--Coverage and payment for new technology
--Post-acute episodes of care
--Dually eligible beneficiaries
--Disease management
--Growth in the volume of physician services
--The financial performance of hospitals and other Medicare providers
--Incentives for quality in traditional Medicare
--Competition in fee-for-service Medicare
--Understanding health insurance markets and choices for
beneficiaries
--Indirect medical education (IME)
--Geographic variation in Medicare payments
MedPAC needs new resources to expand our analytic capacity.--With
each analytic year that passes, the inadequacy of the data available to
assess the Medicare program becomes more evident. To successfully
fulfill our role as adviser to the Congress, we must expand data
sources and the depth of our analysis to better understand provider and
beneficiary needs. Again, such endeavors will require increased
funding. The additional resources requested in our 2004 appropriations
will allow MedPAC to accomplish its congressionally mandated mission
and meet these emerging analytic needs by:
--Expanding the scope of our analysis.--The growing clinical
importance and cost of new technology, outpatient drugs, and
many other services for Medicare beneficiaries is clear. To
fully investigate and educate the Commission and congressional
staff about complex policy issues in a rapidly changing
environment requires an expansion of our current staff capacity
and capabilities. This expansion will improve ongoing
commission work and enable us to meet the increasing number of
inquiries from our authorizing committees for research and
analysis in a timely manner.
--Maintaining and increasing our recruitment and retention of highly
skilled staff.--MedPAC's ability to advise the Congress on the
$250 billion Medicare program hinges on our ability to recruit
and retain a talented staff who bring years of experience and
analytic rigor to bear on the important questions we address.
The skills our staff possess are sought by research firms,
other government agencies, and top consulting firms. To compete
in this market for skilled staff, particularly against the
private sector, we must be able to provide competitive salaries
and benefits.
--Enhancing our ability to supplement staff work with contracted
research.--While working under a staffing cap of 40 FTEs, the
Commission regularly outsources important analyses that inform
Commission recommendations. Research funds will be used to
conduct surveys and analyses by outside contractors, acquire
private sector data such as cost and revenue information from
hospitals to update existing files, and take advantage of new
resources. Given the rapid pace of changes in the Medicare
program, it also is critical to continue to monitor
beneficiaries' access to Medicare providers as well as other
research projects on issues such as the use of outpatient
prescription medications, the characteristics of health
insurance markets, patterns of use of post-acute care services.
--Increasing the Commission's ability to respond to requests for
technical assistance.--The volume of requests has grown this
year, and we expect that trend to continue. While fulfilling
these requests is a vital part of our service to the Congress,
this additional workload strains our ability to complete work
on statutorily required activities.
--Providing resources to meet the day-to-day needs of congressional
staff.--We plan to improve our website so resources such as
background information, additional data, and detailed policy
explanations that complement our reports can be easily
accessed. While we anticipate saving money on printing and
postage through this shift, we will incur additional
information technology costs to create this new platform.
Unavoidable new expenses are consuming a larger part of the
Commission's annual appropriations.--In August 2002, the Commission was
forced to relocate to new office space as a result of a planned
demolition of its previous office location. The rent negotiated for us
at our new location by the General Services Administration (GSA)
resulted in substantial increase over prior years and added new
overhead expenses, such as security. In addition, the growth in the
cost of employee health insurance has added a tremendous burden to our
personnel budget.
MedPAC's work informed congressional and executive branch decisions
during fiscal years 2002 and 2003.--During fiscal years 2002 and 2003,
the Commission submitted its annually mandated March and June reports,
as well as a range of reports mandated under the BBRA and BIPA. The
March 2002 and March 2003 reports focused on specific issues relating
to payment policies and presented recommendations to the Congress on
updating payments to providers of services to Medicare beneficiaries.
Again, in a program that spends $250 billion dollars, these payment
update recommendations have immense repercussions for the federal
budget.
The June 2002 report focused on the Medicare benefit package,
presenting the Congress with an assessment of the need for changes, a
description of the coverage available to supplement the basic benefit
package, and options for changing Medicare benefits. This report
provided the Congress with a crucial perspective on assessing the
Medicare benefit package, gaps in coverage of the current benefits
package, and approaches to consider in revising that package.
The June 2003 report will address conceptual issues facing the
Congress relating to mechanisms for moving the program forward in the
areas of quality, access, program efficiency, and new payment system
design. Some of the topics addressed in the report include experience
with market competition in fee-for-services Medicare; alternatives to
average wholesale price as a mechanism for paying for pharmaceuticals;
and use of quality incentives in Medicare. It will also include our
annual mandated review of the Secretary's estimate of the update for
physician services. We further anticipate production and submission of
a Medicare data book in June 2003, as requested by health committee
staff. By 2004, we plan to supplement the annual data book with a web-
based resource that can be updated to meet future requests for
information.
Reports mandated by previous legislation have been completed on
schedule, and include:
--Adjusting payments for local differences in resident training costs
--Quality improvement standards in fee-for-service Medicare and
Medicare+Choice plans
--Medicare coverage of cardiac and pulmonary rehabilitation services
--State level variation in Medicare spending
--Medicare beneficiaries' access to and use of hospice
--Medicare payment to advanced practice nurses and physician
assistants
--Medicare coverage of nonphysician practitioners
--Choice of skilled nursing facility services in Medicare+Choice
--Analysis of CMS' report on PPS for inpatient psychiatric facilities
MedPAC also commented on proposed rules for long-term care
hospitals, hospital outpatient services, revisions to the physician fee
schedule, and the hospital inpatient prospective payment system. In
addition, the Commission Chairman has testified three times before the
Subcommittee on Health, House Committee on Ways and Means during fiscal
year 2002 and 2003 on physician payment policy, adjusting Medicare
payments for local market input prices, and the Commission's payment
recommendations for fiscal year 2004. The Commission expects to provide
further testimony during the remainder of fiscal year 2003 and fiscal
year 2004.
Congress and the executive branch have used MedPAC products and
services.--MedPAC has provided both direct and indirect support to the
policy process in the Congress and the executive branch. The Congress
and the Centers for Medicare and Medicaid Services have adopted
MedPAC's recommendations on a number of issues, including on risk
adjustment, rural home health agencies and the prospective payment
system, and on productivity adjustments for physician services. In
addition, MedPAC deliberations and reports have influenced the debate
in the Congress. As described above, members and staff have sought
MedPAC's analytic support to help them better assess the issues.
Commission administration and management.--The Commission believes
that its request for an appropriation of $9.3 million is necessary not
only to maintain but also to increase the current level of analysis,
data development, and operations required to fulfill and exceed our
mandated responsibilities to the Congress. This additional funding will
also cover an increase in rental and security costs from forced office
relocation, as well as increased costs for employee health insurance.
Under contract to MedPAC, the General Services Administration (GSA)
provides payroll and accounting services, arranges for office space,
telecommunication services, and travel services at government contract
rates. The Commission obtains computer services from the National
Institutes of Health, but is attempting to move to an alternative
computing platform to minimize costs.
Issues relating to the Medicare program remain at the forefront of
Congressional deliberations. MedPAC requires a budget of $9.3 million
to adequately support the Congress in its deliberations on these
issues.

______

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 2004 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
2002, the RRB paid $8.6 billion in retirement/survivor benefits to more
than 684,000 beneficiaries, and $128 million in unemployment/sickness
insurance benefits to over 39,000 claimants.

PRESIDENT'S PROPOSED FISCAL YEAR 2004 BUDGET

The President's proposed budget includes $99.82 million for RRB
administrative expenses in fiscal year 2004. This total includes $97.72
million for the ongoing costs of current agency operations, which is
the same as the amount included in the President's proposed budget for
fiscal year 2003, but $2.28 million less than our initial appropriation
of $100 million, before the 0.65 percent rescission under the
Consolidated Appropriations Act, 2003 (Public Law 108-7). In addition,
the President's proposed budget includes $2.1 million to contract with
a non-governmental disbursement agent for payment of railroad
retirement and survivor benefits in accordance with provisions of the
Railroad Retirement and Survivors' Improvement Act of 2001 (Public Law
107-90).
Our Justification of Budget Estimates, released on February 12,
2003, indicated that the proposed funding would be sufficient for a
staffing level of 1,019 full-time equivalent staff years (FTE's). The
estimate reflected guidance from the Office of Management and Budget,
which assumed pay increases of 3.1 percent in January 2003 and 2.0
percent in January 2004. The projection was subsequently updated to
reflect the January 2003 pay increase of 4.1 percent enacted under
Public Law 108-7. We now estimate that the President's proposed level
of funding will be sufficient for about 1,008 FTE's, which is 73 fewer
FTE's than the RRB plans to use in fiscal year 2003. This represents a
cumulative reduction of 41 percent in our agency's staffing since
fiscal year 1993.
In order to operate at the President's proposed budget level in
fiscal year 2004, we would need to make extremely deep cuts in funding
for administrative costs throughout the RRB. We would first attempt to
minimize any disruption in customer service by reducing costs which are
indirectly related to these activities. In fiscal year 2003, we have
already suspended most of our employee benefit programs, including
transit benefit subsidies, medical exams, and certain award programs,
which have contributed considerably to employee morale in the past.
These programs would continue to be suspended in fiscal year 2004. We
would also continue to severely limit funds allocated for variable
expenses, such as overtime, travel, training, supplies and equipment.
Further reductions would still be required in two areas directly
affecting the public: agency staffing and information technology
initiatives. Without additional funding, we will need to sharply reduce
our staffing in fiscal year 2004. In addition, due to staffing
reductions, the opportunities to achieve additional savings through
automation will be diminished.
The Administration's proposed budget assumes that the RRB, as a
trust fund agency, will continue to pay actual costs to the General
Services Administration (GSA) for rental of space and services. The RRB
has paid rent to GSA based on actual costs since fiscal year 1975.
Consistent with this practice, the Administration's budget proposal for
fiscal year 2004 includes funding based on actual costs. If GSA were to
charge rent at the commercially equivalent rate in fiscal year 2004,
the RRB's rental costs and total costs would increase by $3.7 million.
We are currently negotiating with GSA officials on a long-term
agreement that would continue the practice of paying actual costs for
rental of space and services and provide for the possible payment of a
fee to be applied against a given year's depreciation expense.
In addition to the requests for administrative expenses, the
Administration's budget includes $119 million to fund the continuing
phase-out of vested dual benefits, and $150,000 for interest related to
uncashed railroad retirement checks.

REQUEST FOR ADDITIONAL FUNDING IN FISCAL YEAR 2004

We believe the President's proposed funding level is not sufficient
to meet our statutory mission under the railroad retirement and
railroad unemployment insurance programs. In order to maintain a
minimum core of experienced staff and continue making information
technology improvements, the RRB will need at least $102.5 million for
agency administration in fiscal year 2004, excluding any costs for
contracting with a non-governmental disbursement agent. In this regard,
it appears unlikely that the transition to a non-governmental
disbursement agent will occur during fiscal year 2004 due to complex
issues which have surfaced during initial procurement actions
concerning the costs and effectiveness of services available from non-
governmental providers.
Accordingly, we request an appropriation of $102.5 million for
agency administration in fiscal year 2004, which is $2.68 million above
the Administration's proposed total funding level. This would
effectively provide an additional $4.78 million for critical needs of
this agency because our request does not include any funding for a non-
governmental disbursement agent. We would use approximately $4.1
million of the increase for compensation and benefits, and the
remaining amount for information technology investments. Even with
these additional dollars, we would only be able to fund approximately
1,058 FTE's, which is 23 fewer than we expect to be able to fund in
fiscal year 2003.
The efficient and timely administration of our Acts requires well-
trained and experienced staff. Although the RRB has already suffered
significant workforce reductions over the last few years, we have been
able to maintain and even improve customer service. This has been
accomplished using a core of experienced staff and productivity gains
through technology. However, our staff has been seriously depleted due
to the continued budget reductions and the aging of our workforce. We
need additional funding in fiscal year 2004, to mitigate the expected
loss of experienced staff by hiring and training new employees and to
increase available resources for advances in information technology.

STRATEGIC MANAGEMENT OF INFORMATION TECHNOLOGY

Information technology initiatives in recent years have
significantly improved operations and allowed the agency to reduce
staffing in key areas. Ongoing and planned projects will further
increase and enhance the efficiency and effectiveness of our systems
for benefit payments and program administration. Key initiatives, which
total $1,436,000 at the Administration's proposed budget level and
$2,111,000 at the RRB's request level, can be grouped into two major
categories, as described below.
Application design services.--Initiatives in this category focus on
automation projects that are critical to our long-range strategy to
promote better customer service through automation, while lowering the
costs and increasing the efficiency of our operations. Specific
investments planned for fiscal year 2004 include:
--Information technology task orders ($250,000 at the President's
proposed level, and an additional $150,000 at the agency
request level).--This non-capital item represents funding to
implement the President's goals for increasing private-sector
competition in commercial-type activities. Contractor resources
would be used on a task-order basis as an alternative to
filling vacant positions.
--Document imaging ($75,000).--This multi-year initiative is key to
accomplishing our objective of paperless processing for claims
operations. These funds will be used for licensing and
performance-based contractual support.
--System development tools ($25,000).--The RRB will require
additional software development tools to remain current with
the changing technologies in electronic commerce and to
participate in interagency initiatives that seek to better
coordinate data sharing among agencies.
--E-Government initiatives (no funding provided at the President's
proposed level, and $300,000 at the agency request level).--The
RRB's Government Paperwork Elimination Act strategy continues
to focus on providing electronic service options for the
highest value and volume transactions. These transactions are
core agency functions that support our primary mission of
administering the benefit provisions of the Acts.
Technology infrastructure services.--These investments are required
to establish a firm foundation for the planned technology advances and
to maintain our operational readiness. The investments in this category
for fiscal year 2004 include:
--Standard workstation infrastructure ($300,000 at the President's
proposed level, and an additional $25,000 at the agency request
level).--Funding is required to continue the agency's policy of
annually replacing and upgrading one-fourth of the agency's
desktop computers, printers and related equipment and software
needed to ensure an adequate work environment.
--Network operations ($250,000).--This amount represents replacements
and upgrades to network servers and related equipment needed to
support a stable and efficient network throughout the agency.
--Mainframe ($175,000 at the President's proposed level, and an
additional $200,000 at the agency request level).--Funding is
requested in fiscal year 2004 for a replacement mainframe
processor or enterprise server that will be supported by the
vendor for continued maintenance and updated software releases
as needed. Funding at the President's proposed level would
allow for payment for the first year of a multi-year lease of a
replacement system. Funding at the agency request level would
allow us to purchase, rather than lease, a system.
--Enterprise storage lease payment ($161,000).--After a competitive
selection process, an enterprise network storage system was
installed to support the growing use of electronic services.
This investment represents the second year of the capital lease
for this equipment.
--Information security ($150,000).--In order to support ongoing
improvement of the overall security structure, we plan to
implement intrusion detection systems and support services and
to conduct a high-level vulnerability assessment using
contractual assistance.
--Enterprise architecture ($50,000).--Contractual assistance will be
used to ensure the development of an efficient and effective
implementation plan to close the gaps between the RRB's current
and target enterprise architectures.

FINANCIAL STATUS OF THE TRUST FUNDS

Railroad Retirement Accounts.--As a result of transfers of $1.5
billion to the National Railroad Retirement Investment Trust, the net
position of the railroad retirement accounts decreased by $1.1 billion
in fiscal year 2002, to $18.7 billion. In fiscal year 2003, we have
transferred an additional $17.75 billion to the Investment Trust.
In June 2002, 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 2002-2026 and contains generally
favorable information concerning railroad retirement financing. The
report included projections of the status of the retirement trust funds
under three employment assumptions. These indicated cash flow problems
only under a pessimistic employment assumption, and then not until
calendar year 2022.
Railroad Unemployment Insurance Accounts.--The equity balance of
the railroad unemployment insurance accounts at the end of fiscal year
2002 was $15.8 million, a decrease of $24.3 million from the previous
year. The RRB's latest annual report on the financial status of the
railroad unemployment insurance system, issued in June 2002, was
generally favorable. The report indicated that even as maximum daily
benefit rates rise 50 percent (from $50 to $75) from 2001 to 2012,
experience-based contribution rates are expected to keep the
unemployment insurance system solvent, except for small, short-term
cash flow problems in 2002 and 2003, requiring a loan from the Railroad
Retirement Account. However, projections show a quick repayment of the
loan even under the RRB's most pessimistic employment assumption. The
average employer contribution rate remains well below the maximum
throughout the projection period, but a 2.5 percent surcharge is now in
effect and a 1.5 percent surcharge is expected for calendar year 2004.
We did not recommend any financing changes based on this report.
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 administrative
budget request for $102.5 million. 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, Inspector General of the Railroad Retirement Board (RRB). I
would like to thank you, Mr. Chairman, and the members of the committee
for your continued support for the Office of Inspector General. I wish
to present our fiscal year 2004 appropriations request and to describe
our planned activities.
The Office of Inspector General requests funding of $6,600,000 to
ensure the continuation of its independent oversight of the RRB. The
agency is responsible for managing benefit programs which paid $8.6
billion in retirement and survivor benefits to approximately 684,000
beneficiaries in fiscal year 2002 and an additional $99 million in
railroad unemployment and sickness insurance benefits to 40,000
claimants. The RRB also administers Medicare Part B, the physician
services aspect of the Medicare program, for qualified railroad
retirement beneficiaries. Through this program, approximately $788
million in annual Medicare benefits are paid to approximately 571,000
beneficiaries.
In fiscal year 2004, the Office of Inspector General will continue
to focus its resources on significant policy issues and 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.
We also request the removal of the prohibition on the use of funds
for any audit, investigation or review of the Railroad Medicare program
and the related reimbursement funds from the Centers for Medicare and
Medicaid Services (CMS). The RRB is responsible for the administration
of Medicare program activities including enrollment, premium
collection, answering beneficiary inquiries and the monitoring of the
contractor's performance in conjunction with CMS. The removal of the
prohibition would allow us to carry out our statutory oversight
responsibilities. The prohibition is contrary to the priorities set by
the Administration and the Congress to reduce fraud in one of the
largest Federal programs.

OFFICE OF AUDIT

Auditors will perform the audit of the RRB's 2003 financial
statements and preliminary work for the 2004 financial statements to
ensure the issuance of reliable financial information. The OIG will
continue to recommend that management consider additional action to
restructure the agency organization to address the overall control
environment, a material weakness cited in the audits of the financial
statements.
We will assign a high priority to the agency's monitoring of
investment activities to ensure the statutory obligations of the
Railroad Retirement Act and the Railroad Retirement and Survivors'
Improvement Act are met. Because of our ongoing concerns on the
investment of agency trust funds, we will seek legislative change to
transfer the oversight and enforcement powers of investment activity
from the agency to the OIG.
We will conduct the annual evaluation of the RRB's information
systems security to meet the requirements of the Federal Information
Security Management Act of 2002. We will also monitor the agency's
information systems operations to determine if the agency is meeting
the goals established in its Strategic Information Resources Management
Plan and to ensure the agency is in compliance with the provisions of
the Information Technology Management Reform Act.
We will ensure that network and system security safeguards are in
place to protect the confidentiality of sensitive financial and
personal information. We will continue our monitoring efforts of the
RRB's document imaging activities and the expansion of paperless
processing to ensure the integrity of records.
Auditors will review RRB benefit processes and procedures to
identify ways to reduce administrative and adjudicative errors. They
will offer recommendations to strengthen the agency's debt collection
program to reduce the outstanding receivables that now total
approximately $57.5 million.

OFFICE OF INVESTIGATIONS

The Office of Investigations (OI) identifies, investigates and
presents cases for prosecution, throughout the United States,
concerning fraud in RRB benefit programs. In fiscal year 2004, OI will
continue to focus its resources on the investigation of cases with the
highest fraud losses. OI currently has approximately 500 active
investigations involving fraudulent benefit payments and fraudulent
reporting with fraud losses of approximately $13 million. These cases
involve all RRB programs that provide sickness and unemployment
insurance benefits to injured or unemployed workers, retirement
benefits, and disability benefits for workers who are disabled.
We will continue our efforts with program managers to address
weaknesses in agency programs that allow fraudulent activity to occur,
and will recommend changes to ensure program integrity.
We will concentrate our resources on cases with the highest fraud
losses, those related to the RRB's retirement and disability programs
as well as fraudulent reporting by railroad employers. We will continue
our investigations of railroad employers and unions which submit
fraudulent compensation and service reports to the RRB and do not
submit the required contributions after they have been deemed to be
covered employers under the Railroad Retirement Act and the Railroad
Unemployment Insurance Act. These investigations typically have a
significant impact on the RRB's trust funds.
In fiscal year 2004, we will continue to use the Department of
Justice Affirmative Civil Enforcement (ACE) program for those cases
which do not meet the criminal guidelines of U.S. Attorneys. Through
this program, we are able to obtain civil judgements and recover trust
fund monies for the RRB.

SUMMARY

In fiscal year 2004, the Office of Inspector General will continue
its oversight of agency operations to improve the delivery of benefits
to beneficiaries and their families. We will issue recommendations to
improve the quality and integrity of benefit programs. We will also
aggressively pursue individuals who engage in activities to
fraudulently obtain RRB funds.

______

MISCELLANEOUS

Prepared Statement of the Morehouse School of Medicine

Thank you for your leadership in securing $300,000 in the fiscal
year 2003 Labor-HHS appropriations bill for the planning of a new
Family Practice Center at the Morehouse School of Medicine.
As you begin to consider the Labor-HHS appropriations bill for
fiscal year 2004, I request that the Committee provide $3,000,000 for
this important project from the Health Resources and Services
Administration's Health Care Facility Construction and Renovation
Program.
Located in Atlanta, GA, Morehouse School of Medicine was founded in
1975 with the mission of recruiting, educating, and graduating students
from socially and economically disadvantaged backgrounds for service as
primary care physicians in medically underserved communities. Recent
studies reflect the need for more primary care physicians, which places
Morehouse School of Medicine on the cutting edge of needed change in
health professions education. Nationally, MSM ranks among the top
schools in the country in the percentage of graduates entering primary
care. During the decade of the 1990's, MSM ranked first among all U.S.
medical schools, in three national surveys, in the percentage of
graduates entering primary care in 1993, 1995, and 1999.
The medical school's Department of Family Medicine, which includes
both academic and clinical functions, currently occupies approximately
10,000 gross square feet at Southwest Hospital Facility in Atlanta,
Georgia. The existing facility of the department does not meet its
current space needs. The expanded space that a new family practice
facility will provide is necessary in order to maintain accreditation.
A new facility will enable our institution to further its
commitment to the recruitment and training of students from
disadvantaged communities. In addition, the new center will assist the
medical school in addressing the longstanding health status disparities
that exist among minority and medically underserved populations. Thank
you very much for your consideration of this important request If you
have any questions, please do not hesitate to contact me.

______

Prepared Statement of the University of Medicine and Dentistry of New
Jersey

Request summary.--The following is the testimony of the University
of Medicine and Dentistry of New Jersey. We are seeking support for the
following priority projects, which we believe, are consistent with the
mission of this committee. The first is to expand the state-wide
activities of the Institute for the Elimination of Health Disparities;
the second is the continued development of the Child Health Institute
of New Jersey in New Brunswick; and the third is to expand the New
Brunswick based Dean and Betty Gallo Prostate Cancer Center outreach
and cancer control programs to reach populations at risk in the Newark/
northern New Jersey and Camden/southern New Jersey regions, and to
strengthen the Center's clinical research programs. In addition,
capital and program support is requested to create dedicated geriatric
research space at our Center for Aging at the University's School of
Osteopathic Medicine in Stratford. We also seek support for two
initiatives to improve obstetrical and pre- and post-natal services in
Newark and under served communities in southern New Jersey.
The University of Medicine and Dentistry of New Jersey (UMDNJ) is
the largest freestanding public university of the health sciences in
the nation. The University is located on five statewide campuses and
contains three medical schools, and schools of dentistry, nursing,
health related professions, public health and graduate biomedical
sciences. UMDNJ comprises a University-owned acute care hospital, three
core teaching hospitals, an integrated behavioral health care delivery
system, a statewide system for managed care and affiliations with more
than 200 health care and educational institutions statewide. No other
institution in the nation possesses the resources that match our scope
in higher education, research, health care delivery, and community
service initiatives with federal, state and local entities.
We wish to express UMDNJ's appreciation to this committee for its
support of the National Institutes of Health (NIH) and the important
biomedical projects that are funded by the NIH, including those at
UMDNJ. We appreciate this committee's strong support which is essential
in maintaining the high standards of excellence in research and
training sponsored by the NIH, and thank you for you actions in fiscal
year 2003 which completed a doubling of NIH's budget over a five-year
period. However any dramatic decline in the rate of growth for the NIH,
as proposed by the Administration's fiscal year 2004 budget, threatens
the momentum gained in medical research in recent years at a time when
the nation continues to confront many health challenges. We urge the
committee to maintain adequate funding levels for the NIH that will
continue the progress of the last five years.
The University's priority projects are statewide in scope and
include collaborations with our academic and health care partners. Our
mission is focused on building ``Centers of Excellence'' that will
expand our research, enhance our educational programs and provide
access to quality health care services for all New Jerseyans. At the
very foundation of this mission is our commitment to utilize the full
strength of our research, educational and service programs in reducing
and eliminating ethnic and health disparities. For that reason, UMDNJ's
first priority again this year is the Institute for the Elimination of
Health Disparities.
Despite the dramatic improvements in the health of the general
population, the federal government has identified striking disparities
in the overall health and life expectancy of racial and ethnic
populations in the United States. Eliminating health disparities among
different segments of the population is a primary goal of Healthy
People 2010, the nation's public health agenda for this decade, as well
as that of Healthy New Jersey 2010, the companion public health agenda
for the state.
UMDNJ has long been recognized for its leadership in providing
educational opportunities and health care services to under represented
communities throughout our state. We are a leader in minority student
and faculty recruitment and in the provision of services to underserved
populations through our core and affiliated hospitals, clinics and
community-based programs.
The University has focused its commitment to achieving better
health for minority communities by creating the Institute for the
Elimination of Health Disparities.
Congressional support for the Institute has resulted in $630,000 in
directed appropriations over the last two years. With this support and
matching funds provided by UMDNJ, the Institute is bringing together
the nationally-recognized research, education and community outreach
programs aimed at eliminating health disparities that are being
conducted by UMDNJ's eight schools on five academic campuses.
The Institute is collaborating extensively with the Newark and
Camden, NJ communities, cities with the greatest health disparity
needs, to identify and implement strategies to improve community
health. It also widely distributes information about health disparities
to community law audiences, the research community, and healthcare
providers across the state.
Continued support for the Institute is requested to broaden these
initiatives and initiate new activities to address the existing gaps in
health outcomes. Requested funding will expand the Institute's network
of partnerships with grass-root organizations and agencies to provide
academic-based leadership in developing health promotion and risk
reduction strategies that respond to community needs and priorities.
Support will also be utilized to provide start-up seed funding for
faculty research projects that can be leveraged in seeking long-term
program support. The Institute's research agenda seeks to better
understand the socio-economic and medical causes for health
disparities, and is directed toward federally identified priority
areas, including infant mortality, cancer, cardiovascular disease,
diabetes, HIV/AIDS and childhood immunizations. The Institute will
continue its development of a statewide public information campaign
about health disparities to better inform researchers, healthcare
providers and the public about successful approaches to improve the
health of minority and ethnic groups.
New Jersey, with a demographic profile and patterns of disparity
that closely matches the nation's, can serve as an ideal site for
federally sponsored research and education initiatives, with results
applicable to the entire nation. UMDNJ is ideally positioned to lead
New Jersey's efforts in eliminating racial and ethnic health
disparities. We are respectfully seeking $4.5 million to continue the
development of the Institute on behalf of the citizens of New Jersey
and the nation.
Our second priority is the Child Health Institute of New Jersey.
The Child Health Institute of New Jersey (CHI), at UMDNJ-Robert
Wood Johnson Medical School, is a comprehensive biomedical research
center focused on the health and well being of children. Located on the
New Brunswick campus of UMDNJ-Robert Wood Johnson Medical School,
research conducted by the CHI will aid in the development of new
treatments, therapies and cures for devastating and debilitating
childhood disorders. Biomedical researchers will investigate the
environmental, genetic and cellular causes of these diseases in infants
and children through basic scientific studies. Some of the disorders
that warrant immediate attention include asthma, muscular dystrophy,
diabetes, birth defects and neurodevelopmental disorders including
autism and spina bifida.
CHI has assembled more than $40 million in funding through a strong
partnership among private, corporate and government entities. Support
received for the construction of the Institute's 150,000 square foot
building includes more than $6 million in general federal
appropriations over the last four years, a $1.9 million grant from the
National Center for Research Resources of the NIH in fiscal year 2000,
and approximately $17 million from private foundations, corporations
and individuals. The State of New Jersey has provided $3.7 million with
a recurring annual appropriation of $1.7 million to support the debt
service on the bonds sold to finance the remaining building costs. The
CHI has raised an additional $15 million from corporations, foundations
and individuals to support its scientific mission and goals. The CHI
will increase the current research funding base of the UMDNJ-Robert
Wood Johnson Medical School and strengthen research efforts with
clinical departments at Robert Wood Johnson University Hospital
(RWJUH), especially those involved with the new Bristol-Myers Squibb
Children's Hospital at RWJUH.
The Child Health Institute has the expertise and the infrastructure
in place to achieve major breakthroughs and discoveries that will lead
to improvements and cures in childhood diseases. We are respectfully
requesting $2 million for the purchase of analytical equipment,
including laser scanning and photon microscopes, a mass spectrometer,
and ventilated rack systems to further the development of the Child
Health Institute of New Jersey facility.
As noted above, UMDNJ is committed to supporting activities that
will help eliminate health disparities. This is why our next priority
is the Dean and Betty Gallo Prostate Cancer Center.
The Cancer Institute of New Jersey (CINJ) was established in 1990
with a $10 million capital grant from the federal government. Over the
past decade, CINJ has grown to become one of the nations most
successful cancer institutes. As New Jersey's only NCI-Designated
Comprehensive Cancer Center, CINJ joins an elite network of 41 cancer
centers nationwide that are leaders in cancer treatment, research, and
education.
One of CINJ's most significant accomplishments is the creation of
the Dean and Betty Gallo Prostate Cancer Center, established with
funding from the federal government. The Center honors the late
Congressman Dean Gallo, who succumbed to prostate cancer in 1994.
Located at the CINJ facility in New Brunswick, the Center has programs
in public outreach, cancer control, prevention, basic and clinical
research and treatment of prostate cancer. It is the only named center
of its kind in the nation totally dedicated to the eradication of
prostate cancer. The Center has secured more than $12 million in
external public and private support in recent years.
Consistent with UMDNJ's priority goal of focusing on minority
health issues, we are seeking support to expand the Gallo Center's
public outreach and cancer control programs to regions where resources
can be focused on critical minority and medically underserved
communities who exhibit high incidence for prostate cancer.
The Gallo Center has already developed an extensive network of
effective partnerships, working with groups such as the 100 Black Men
of New Jersey, the Men's Health Network, and the Jewish Renaissance
Foundation to offer prostate cancer education and screenings in
minority communities. Additional resources are needed to expand the
Gallo Center's education and prevention services to other regions of
the state. Support will allow a major expansion of the Center's Public
Outreach and Cancer Control initiatives to the Newark/northern New
Jersey and Camden/southern New Jersey regions, and to targeted
communities in Middlesex County to increase public awareness about
early detection of prostate cancer, and to reduce its incidence among
African-American, Latino, Asian-American and other undeserved
populations most affected by this dreaded disease.
These outreach activities would also support research by CINJ
investigators interested in improving outcomes by understanding how
cultural issues affect cancer education, screening and treatment.
Additional resources are needed to accelerate the Gallo Center's
promising basic and clinical research programs that are investigating
the molecular mechanisms involved in prostate cancer initiation and
progression, and for translational studies to move laboratory
discoveries into clinical practice. We respectfully request $3 million
to expand the Gallo Center's Public Outreach and Cancer Control
initiatives, and $3 million for the expansion of basic and clinical
research programs.
Another priority initiative is the Geriatric Research Center.
The Center for Aging at the UMDNJ-School of Osteopathic Medicine
(SOM) is an inter-disciplinary Center of Excellence in geriatric
education, clinical care and research. The Center is nationally
recognized as a leader in quality care for older individuals. Located
within southern New Jersey, services are provided to the region's
growing elderly population through the Center's network of ambulatory,
acute care, long-term care and community-based programs. Attracting
more researchers to the Center is critical to achieving national
prominence as a Geriatric Research Center of Excellence.
The Center for Aging's complementary clinical service base provides
opportunities for investigators to study the application of research
findings among large cohorts of elderly individuals in varied settings
over time. Based on an understanding of biology, behaviors, social and
physical environments, policies and interventions can be developed
which will enable our elderly population to live longer, more
productive lives. The research programs of the Center will focus on
cellular, biochemical and physiological aspects of aging. Research will
be directed at the genetic determinants of both aging and diseases
common in the elderly. The Geriatric Research Center will build on
existing programs in nutrition, protein loss, injury, and Alzheimer's
disease to expand basic science research programs in support of the
established clinical and educational programs at the Center for Aging.
A major obstacle is the critical lack of dedicated research space at
the Center for Aging. We are therefore seeking $5 million in capital
and program funds to support dedicated space and faculty for a
Geriatric Research Center within the Center for Aging at the UMDNJ-
School of Osteopathic Medicine.
To address other critical healthcare disparity needs, we are
seeking support for two additional initiatives, both aimed at improving
obstetrical and pre-and post-natal services in Newark and in southern
New Jersey.
In Newark the infant mortality rate, and percentage of low-weight
births, are both significantly higher than that of the state, and is
particularly alarming among black infants. The University is seeking
support for an initiative to partner with Newark community health
centers to target women at greatest risk for poor pregnancy outcomes
for early enrollment into prenatal care. Early enrollment into prenatal
care provides the best opportunity to identify and address behavioral
practices and other maternal factors that adversely affect pregnancy
outcomes. Collaborating on this initiative will be the UMDNJ Institute
for the Elimination of Health Disparities, UMDNJ-University Hospital,
and UMDNJ-New Jersey Medical School.
Requested funding will also support renovations at UMDNJ-University
Hospital in Newark to upgrade outdated labor and delivery facilities.
Proposed renovations will improve patient flow and replace the current
multi-transfer system between the triage, labor, delivery and recovery
areas into a combined labor/delivery/recovery suite. Increased space
allocations for labor and delivery rooms, and centralized nursing
stations are incorported into the design to enhance patient comfort and
increase service efficiency. We respectfully seek support of $8.15
millon in capital and program funds for this initiative.
In southern New Jersey, a rising birthrate is creating greater
demand for expanded delivery and pre- and post-natal services at a time
when gaps in such services are growing. The UMDNJ-School of Osteopathic
Medicine is seeking support to address immediate and long-range needs
for improving access to maternity care, as well as pre- and post-natal
care and education in the region's underserved communities. University
supported medical liability insurance will be leveraged to ``seed''
underserved areas with new OB/GYN providers, and help ensure that all
hospitals in the region can provide 24/7 coverage for delivery
services. Pre- and post-natal education and awareness programs will be
conducted collaboratively with the Institute for the Elimination of
Health Disparities. Support of $2.5 million is respectfully requested
for this initiative.
Again, we thank you for this opportunity to submit testimony on
behalf of UMDNJ's priority initiatives that will advance research,
education and treatment of diseases and disabilities that most
seriously affect children, the elderly and minority populations, and
will go a long way toward eliminating health disparities in the areas
of cancer, obstetrical and pre- and post-natal care. We also thank this
committee for its leadership and its continued support for our
programs.

______

Prepared Statement of the American Museum of Natural History

ABOUT THE AMERICAN MUSEUM OF NATURAL HISTORY

The American Museum of Natural History [AMNH] is one of the
nation's preeminent institutions for scientific research and public
education. Since its founding in 1869, the Museum has pursued its
mission to ``discover, interpret, and disseminate--through scientific
research and education--knowledge about human cultures, the natural
world, and the universe.'' It is renowned for its exhibitions and
collections, and with nearly four million annual visitors--
approximately half of them children--its audience is one of the
largest, fastest growing, and most diverse of any museum in the
country. Museum scientists conduct ground breaking research in fields
ranging from all branches of zoology, comparative genomics, and
informatics to earth, space, and environmental sciences and
biodiversity conservation.
Today more than 200 Museum scientists with internationally
recognized expertise, led by 46 curators, conduct laboratory and
collections-based research programs as well as fieldwork and training.
Scientists in five divisions (Anthropology; Earth, Planetary, and Space
Sciences; Invertebrate Zoology; Paleontology; and Vertebrate Zoology)
are documenting changes in the environment, making new discoveries in
the fossil record, and describing human culture in all its variety. In
the Museum's Institute for Comparative Genomics, established in 2001,
researchers are mapping the genomes of non-human organisms as well as
creating new computational tools to retrace the evolutionary tree. The
Museum also conducts graduate training programs in conjunction with a
host of distinguished universities, supports doctoral and postdoctoral
scientists with highly competitive research fellowships, and offers
talented undergraduates an opportunity to work with Museum scientists.
The AMNH collections of some 32 million natural specimens and
cultural artifacts are a major scientific resource, providing the
foundation for the Museum's interrelated research, education, and
exhibition missions. They often include endangered and extinct species
as well as many of the only known ``type specimens,'' or examples of
species by which all other finds are compared. Within the collections
are many spectacular individual collections, including the world's most
comprehensive collections of dinosaurs, fossil mammals, Northwest Coast
and Siberian cultural artifacts, North American butterflies, spiders,
Australian and Chinese amphibians, reptiles, fishes, and one of the
world's most important bird collections. Collections such as these
provide vital data for Museum scientists as well as for more than 250
national and international visiting scientists each year.
Permanent and temporary exhibits--from the Rose Center for Earth
and Space to The Genomic Revolution (see below)--are among the Museum's
most potent educational tools for promoting public education, science
literacy, and lifelong learning. Science Bulletins--high definition
video wall displays--present breaking science news, images, and data in
the Museum's new Halls of Biodiversity, Planet Earth, and the Universe.
The Education Department builds on these exhibition and science
resources to offer rich programming dedicated to increasing scientific
literacy, encouraging students to pursue science and museum careers,
and to providing a forum for exploring the world's cultures. The Museum
is also reaching beyond its walls: through its National Center for
Science Literacy, Education, and Technology, launched in 1997 in
partnership with NASA, it is exploiting new technologies to bring
materials and programs into homes, schools, museums, and community
organizations around the nation.

COMPARATIVE GENOMICS INITIATIVE: RESEARCH, TRAINING, EDUCATION AND
OUTREACH RESOURCES

The American Museum shares with DHHS and the Department of
Education a fundamental commitment to improving the nation's health and
education and advancing the research, training, facilities, and
technology that support them. The Museum is deeply engaged in the area
of comparative genomics, and it is in this vital area that the Museum
seeks to partner with the DHHS/HRSA and the Department of Education.

Genomic Science and Training Resources
DHHS leads the nation's health-related research and genome science,
advanced sequencing technologies, instrumentation, and facilities. The
American Museum, in turn, is home to a preeminent molecular research
and training program and leading science education and outreach
efforts. In the era of genomics, museum collections have become
critical baseline resources for the assessment of genetic diversity of
natural populations; studying genomic data in a natural history context
makes it possible to more fully understand the impacts of new
discoveries in genomics and molecular biology. Genomes of the simplest
organisms provide a window into the fundamental mechanics of life, and
understanding their natural capabilities can help solve challenges in
biodefense, medicine, and health care. In the Museum's molecular
laboratories, in operation now for eleven years, more than 40
researchers in molecular systematics, conservation genetics, and
developmental biology conduct genetic research on a variety of study
organisms. The labs also nourish the Museum's distinguished training
programs that serve up to 80 undergraduates, doctoral, and postdoctoral
trainees annually.

Frozen Tissue Collection
In support of its molecular program, the Museum has launched an
expansion of its collections to include biological tissues and isolated
DNA preserved in a super-cold storage facility. Because this collection
preserves genetic material and gene products from rare and endangered
organisms that may become extinct before science fully exploits their
potential, it is an invaluable resource for research in many fields
including genetics, comparative genomics, and biodefense. Capable of
housing one million specimens, it will be the largest super-cold tissue
collection of its kind. In the past two years, 15,000 specimens not
available at any other institute or facility have already accessioned.
At the same time, the Museum is pioneering the development of
collection and storage protocols for such collections. To maximize use
and utility of the facility for researchers worldwide, the Museum is
also developing a sophisticated website and online database that
includes collection information and digitized images.

Cluster Computing
The Museum also has exceptional capacity in parallel computing, an
essential enabling technology for phylogenetic (evolutionary) analysis
and intensive, efficient sampling of a wide array of study organisms.
Museum scientists have constructed an in-house 560-processor computing
cluster, and are in the process of upgrading it to 128 dual CPU nodes
with 2 Gb/sec Myrinet interconnections. It is the fastest parallel
computing cluster in an evolutionary biology laboratory and one of the
fastest installed in a non-defense environment.
Museum investigators have taken a leadership role in developing and
applying new computational approaches to deciphering evolutionary
relationships through time and across species; their pioneering efforts
in cluster computing, algorithm development, and evolutionary theory
have been widely recognized and commended for their broad applicability
for biology as a whole. The bioinformatics tools Museum scientists are
creating will not only help to generate evolutionary scenarios, but
will also inform and make more efficient large genome sequencing
efforts. Many of the parallel algorithms and implementations
(especially cluster-based) will be applicable in other informatics
contexts such as annotation and assembly, breakpoint analysis, and non-
genomic areas of evolutionary biology as well as in other disciplines.

Education and Outreach
The Museum matches these outstanding science resources with an
ambitious genomics education and outreach capacity. The Education
Department provides standards-based curricular materials and on-site
programs for school and camp groups from throughout the region,
Moveable Museums that travel to schools and community sites, a model
after-school program, award-winning online educational resources, and
lectures, workshops, and field excursions for adult learners. Its
award-winning online professional development program for science
teachers--Seminars on Science--includes subjects in genetics, genomics,
and genethics. These and other programs attract more than 500,000
students and teachers on school visits and nearly 5,000 teachers for
special professional development opportunities. The Museum's website
(www.amnh.org) also serves to reach online audiences nationally,
offering in-depth virtual ``tours'' of exhibitions; features on
curators, expeditions, and current research; access to collections; and
links to the AMNH digital library.

COMPARATIVE GENOMICS INITIATIVE

Building on these unique strengths in genomics science, training,
and education, and in concert with the health, education, and training
goals of DHHS and the Department of Education, in 2001 the Museum
launched an ambitious initiative--The Institute of Comparative
Genomics. Equipped with the parallel computing facility, molecular labs
with DNA sequencers, ultra-cold storage units, vast biological
collections, and researchers with expertise in the methods of
comparative biology, as described above, the Institute is positioned to
be one of the world's premier facilities for mapping the genome across
a comprehensive spectrum of life forms. Working collaboratively with
New York's outstanding biomedical and educational institutions, it is
conducting research and training in such critical areas as microbial
genomics and biocomputation. Complemented by the Museum's planned
education and outreach utilizing innovative educational technologies,
the Institute will constitute a national resource of unique scope and
range.
The Institute is establishing a distinguished research and training
record. Museum scientists have pioneered theoretical and analytical
approaches and are leading major new international research projects in
assembling the ``tree of life.'' They have developed efficient software
for the interpretation of microarray data, which can be used to support
more accurate diagnosis of pathogens, and novel methodologies and
algorithms for analyzing genomic, chromosomal, and other data to
discern evolutionary relationships among organisms. Current projects
include sequencing pathogens and, with NIH and DOE support, tracing the
evolution of pathogenicity and transfer of disease-causing genes over
time and between species.
In developing the Institute, the Museum plans to expand its
curatorial range in microbial systematics and the program that now
trains dozens of graduate students every year; utilize the latest
sequencing technologies; employ parallel computing applications to
solve combinatorily complex problems involving large real work
datasets; and grow the super-cold tissue collection. It plans to expand
and renovate lab space and facilities into a state-of-the-art training
and research laboratory to accommodate additional students and
researchers.
Along with the research and training components of the genomics
initiative, the Museum is using education technologies to promote
understanding of genomics. The Museum shares the Department of
Education's commitment to improving the nation's education through
teacher quality, providing additional educational opportunities outside
of the classroom, and harnessing new technologies to enhance
instruction, and its education and outreach plans for the Institute of
Comparative Genomics will help to advance these shared goals.
Its public education accomplishments to date include the landmark
exhibition, The Genomic Revolution, open from June through December
2001. The exhibition, attended by approximately 500,000 visitors and
now touring nationally, examined the revolution taking place in
molecular biology and its impact on modern science and technology,
natural history, biodiversity, and our everyday lives. The Museum has
also hosted several conferences on important topics related to
genomics: Sequencing the Human Genome: New Frontiers in Science and
Technology, an international conference featuring leading scientists
and policymakers in Fall 2000; Conservation Genetics in the Age of
Genomics in Spring 2001; and New Directions in Cluster Computing in
June 2001, which explored how parallel computing enables genomic
science and other fields. June 2002, we hosted an international
conference examining current knowledge of life's history, Assembling
the Tree of Life: Science, Relevance, and Challenges.
Using cutting-edge education and exhibition technologies and
distance learning applications, the Museum plans to expand and
diversify the reach of our genomics related professional development,
educational materials, and exhibition-related programming.
Specifically, the Museum's plan to develop a suite of standards-based
curricular materials and programs related to genome science for online
distribution to educators nationwide; to adapt and extend our
successful Seminars on Science model of online professional development
courses for K-12 teachers nationwide in subjects related to genomics;
to enhance exhibition technologies and include a focus on genomics in
our Science Bulletins; and to pilot a distance education initiative
live from the Museum's halls and classrooms that will include a
selection of regular interactive classes, professional development
mini-series, and special live events, all designed to promote genomics
teaching and learning in New York City, the region, and the country.

GENOMICS INITIATIVE PARTNERSHIP

The Museum seeks $7 million in fiscal year 2004 to partner with
DHHS/HRSA and the Department of Education in furthering its genomics
research, training, and education initiative.--In so doing, the Museum
will contribute its participatory share with funds from nonfederal as
well as federal sources, including funds raised through the Museum's
own efforts from the City and State of New York as well as private
contributions and foundations. In partnership with these agencies, the
Museum will be poised to contribute its unique resources to the
nation's health research and education missions: to advancing basic
research and training in genomics, which has its potential applications
in medicine, biomedical research, and clinical treatment; and to
promoting science education and science literacy in the era of
genomics. As a federal partnership, the Museum proposes two
interrelated approaches:
--$5 million as a facilities/instrumentation initiative, building on
our already extensive investments, to construct a NATIONAL
RESEARCH AND TRAINING LABORATORY FOR COMPARATIVE AND MICROBIAL
GENOMICS. In partnership with DHHS/HRSA, the Museum plans to
expand its existing Molecular Program facilities into a state-
of-the-art molecular laboratory for research and training
activities. The requested support will be used towards
constructing a cutting-edge laboratory and upgrading HVAC and
plumbing in 6,000 sq. feet of existing lab, office, and storage
space. The expanded facility will provide up-to-date work space
and instrumentation for graduate and postdoctoral trainees as
well as senior scientists.
--$2 million as an education technology initiative. In partnership
with the Department of Education, the Museum will expand
professional development, create K-12 curriculum materials,
enhance exhibition technologies, incorporate a focus on
genomics in the Museum's Science Bulletins, develop a distance
education initiative, and launch online learning resources to
promote teaching and learning nationwide about genomic science.
In partnership, the American Museum of Natural History and the
Departments of Health and Human Services and Education will be
positioned to leverage their unparalleled resources to advance shared
goals for improving the nation's health and welfare and promoting its
research and education in the genomics era.