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



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

                              ----------                              

                                       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
----------------------------------------------------------------------------------------------------------------
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
----------------------------------------------------------------------------------------------------------------

                                 ______
                                 
    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.

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 
their 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

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.

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.''

    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:
---------------------------------------------------------------------------
    \1\ ``Study of Dental School Facilities and Programs,'' American 
Dental Association, August, 1999.
---------------------------------------------------------------------------
  --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.
---------------------------------------------------------------------------
    \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.
---------------------------------------------------------------------------
    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.
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