[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 2005

                              ----------                              

                                       U.S. Senate,
           Subcommittee of the Committee on Appropriations,
                                                    Washington, DC.

                       NONDEPARTMENTAL WITNESSES

    [Clerk's note.--The subcommittee was unable to hold 
hearings on nondepartmental witnesses. The statements and 
letters of those submitting written testimony are as follows:]

                          DEPARTMENT OF LABOR

    Prepared Statement of the Association of Farmworker Opportunity 
                                Programs
    Good morning Chairman Specter and members of the subcommittee. My 
name is David Strauss and I represent the 50 nonprofit and public 
agencies that provide job training and related services to our nation's 
migrant and seasonal farmworkers.
    About 3 million people labor in the fields and farms of America, 
from Hawaii to Florida and Puerto Rico, from Maine to California. 
Estimates are that 85 percent of the fruits and vegetables we eat are 
hand harvested by farmworkers. The pay is extremely low: most 
farmworkers earn less than $12,000 per year. Few farmworkers receive 
the job-related benefits, such as health insurance and sick pay, which 
we all take for granted. In most states, agricultural workers are not 
even eligible for unemployment compensation. They live a tough life. 
Many workers travel hundreds, sometimes thousands of miles in search of 
work. They get paid only when they perform the work: if the weather is 
bad or the crop is not as plentiful as the farmer had hoped, they 
simply do not receive wages. They typically cannot afford decent 
housing. Their children have to struggle mightily to even complete 
their public school education. The dropout rate for farmworker youth, 
especially those who migrate with their parents, is enormous.
    For over 33 years the federal government has made and kept a 
commitment to these hardworking people. Special federal programs were 
created to recognize the reality that farmworkers often cross state 
lines to work and live. Thus, we have migrant head start, migrant 
health, migrant education, and the job training effort called the 
National Farmworker Jobs Program. These all are federally funded and 
have guidelines that acknowledge that Governors should not be placed in 
a position of deciding whether or not agricultural workers qualify for 
these services under state residency or other localized requirements.
    Today, I want to talk with you about the last program I mentioned: 
the National Farmworker Jobs Program, referred to in the budget as the 
migrant and seasonal farmworker job-training program. This program 
serves about 25,000 farmworkers each year, a very small percentage of 
the eligible total. Most of the customers are Hispanic; all must be 
American citizens or possess valid work authorization documents.
    It is an extraordinary program on several counts: it is the most 
successful program that the Department of Labor funds. In its most 
recent national report, this program outperformed all others, including 
the Job Corps, the Dislocated Workers program, the Older Americans 
program, and so on. The program is operated by nonprofit and public 
organizations that typically have to serve an entire state with ever-
diminishing funds. In fact, they have to compete for the grants.
    Yet, they are able to hire staff who are bilingual, are culturally 
sensitive, and are skilled at serving people with significant barriers 
to career advancement. Characteristics such as low English proficiency, 
low education levels, and extreme poverty present significant 
challenges to case managers who must help farmworkers find a path to a 
more stable and better paying career. And they do. Staff of the 
National Farmworker Jobs Program reach out to farm laborers in camps, 
fields, churches, community centers: wherever necessary to meet the 
needs of these hardworking people. The hours they work and the 
locations in which they provide services must be flexible, for during a 
harvest, farmworkers may toil from sunup to after sundown.
    The results are excellent: over 83 percent of farmworkers who 
wanted training and a new job got one, and their average wage gains 
exceeded $4,400 per year. That data comes from the Department of Labor, 
not from our Association. Despite this excellent performance, despite 
the incredible efforts of dedicated staff and despite the commitment of 
program operators to achieve their goals with diminishing resources, 
the Department of Labor (DOL) seeks to eliminate this program in its 
budget request for 2005. DOL contends that the program is ineffective, 
that it duplicates the services available to farmworkers in the One 
Stop Career Centers, and that it spends too much time and money on 
supportive services. They are incorrect.
    Now, DOL stated the same rationale in its 2003 and the 2004 budget 
requests, and you rejected it. Instead, you funded the program at just 
under the 2002 level in those years. Members of the Association of 
Farmworker Opportunity Programs and I have met with Department leaders 
on several occasions to educate them on how the program works and to 
explain how effective it is. Now we have DOL's own report that 
illustrates that it is their best job-training program. Yet they 
continue to resist your instruction to maintain the National Farmworker 
Jobs Program.
    Since I can only speculate on why the Department persists in this 
stance, I will answer their three claims. First, as I said earlier the 
program is amazingly effective, especially when you also consider that 
many programs operate in counties with some of the highest unemployment 
rates in the country. I would like to submit relevant portions of the 
Workforce System Results as of September 30, 2003 issued in mid-January 
of this year as proof of our success.
    Secondly, this program does not duplicate services in the One Stop 
Career Centers. The One Stop system created in the Workforce Investment 
Act of 1998 represents an improvement in training and placement 
services for job seekers. In fact, NFJP agencies are mandated partners 
in that system. Labor Secretary Elaine Chao may not be aware that most 
of our members have memoranda of agreement with their state's workforce 
boards, and participate in the One Stop Centers. But many rural areas 
do not have One Stop centers that are easily accessible to those who 
work in the fields. Further, these centers seldom operate outside 
normal business hours, and they have no program of outreach to hard to 
serve agricultural workers. One Stops are held to program measures that 
work against serving people with less than 10th grade educations. And 
many rural One Stop Centers simply do not have staff who can converse 
in Spanish, Creole, Vietnamese or other languages that farmworkers in 
particular areas may speak. It would be a great mistake to assume that 
removing the NFJP agency from the One Stop partnership would improve 
services to farmworkers, as DOL has suggested. In fact, ending the NFJP 
would, I am certain, end job-training services to farmworkers in most 
of this nation. And that would be a great tragedy, for this program 
represents access to the American Dream for migrant and seasonal 
farmworkers. Whether they choose to build their careers in agriculture 
or in another industry, they deserve the opportunity to achieve a 
better life through training and job placement.
    Finally, DOL claims that our members spend too much time and money 
on what we call related assistance--services that help a farmworker 
prepare for training or stabilize their economic situation while they 
continue to work in agriculture. First, the data: last year, about 8.5 
percent of grant funds were spent on related assistance, while over 81 
percent went for job training and placement services. Now, it is true 
that a majority of the farmworkers nationwide who participated in our 
program received such assistance and no training. However, in states 
such as California, Texas, Washington, and Arizona you will find that a 
healthy majority of customers received job training and placement. In 
states to which farmworkers migrate and work for relatively brief 
periods, they tend to receive more life-sustaining services such as 
emergency shelter, car repair vouchers, or food. Again, I remind the 
committee that farmworkers do not have the same safety net as the rest 
of us: no unemployment insurance, for example. And when they migrate, 
they are often in places that have residency requirements for 
assistance.
    I dwell on this point because this seems to me to be a particularly 
cruel and insensitive criticism of our members' activities--they are 
charged by the Section 167 of the Workforce Investment Act with 
providing related assistance, and for good reason. And I think members 
of the agricultural industry would be unpleasantly surprised to learn 
that DOL thinks it is wrong to help a worker who plans to harvest a 
crop. Sometimes that help prevents homelessness. Sometimes the help 
consists of English language training so the farmworker can better 
understand the job he/she must perform. Sometimes it consists of 
pesticide safety training, which enables farmers to legally employ 
people who must be certified in such safety before they can work amidst 
dangerous chemicals.
    The Office of Management and Budget has issued an ``analysis'' of 
the NFJP that is as flawed as the Department of Labor's statements. 
Rather than going into it in detail today, I will instead ask you to 
accept our analysis and rebuttal of their Performance Assessment Rating 
Tool.
    In closing, I reiterate: the National Farmworker Jobs Program does 
an excellent job by the Department's own assessment. More importantly, 
the program operators are keeping faith with the charge that you gave 
them when you enacted the Workforce Investment Act in 1998. This 
program represents a path to the American Dream for our country's 
lowest paid and hardest working people. Please don't let them down. 
Maintain the National Farmworker Jobs Program in the appropriation for 
the Department of Labor for 2005. Thank you for this opportunity to 
present testimony today.
    For more information contact: David Strauss, AFOP, 4350 N. Fairfax 
Drive, 
Suite 410, Arlington, VA 22203 Telephone: 703-528-4141, ext. 101 email: 
[email protected]
                                 ______
                                 
             Prepared Statement of Rural Opportunities Inc.
    Honorable Chairman, Senator Arlen Specter, and Honorable Committee 
Members: I would like to sincerely thank you for this opportunity to 
present testimony to the Senate Appropriations Subcommittee for Labor, 
Health and Human Services, and Education.
    I am submitting this testimony on behalf of Rural Opportunities 
Inc., provider of the National Farmworker Jobs Program (NFJP) services 
to Migrant and Seasonal Farmworkers in Pennsylvania, New York, New 
Jersey and Ohio. NFJP is funded under Section 167 of the Workforce 
Investment Act (WIA). I am requesting that the Subcommittee recommend 
full restoration of funding for this initiative at $80 million for 
Federal fiscal year 2005.
    Historically, Congress has recognized the need for a nationally-
administered program to serve Migrant and Seasonal Farmworkers. The 
mobility and unique socio-economic characteristics of these workers 
leave them unserved or under-served by any other workforce program 
convention. This fact is clearly evident, as each Congress since 1973 
has passed an Act designating specific programs to serve Farmworkers: 
the Comprehensive Employment and Training Act (CETA), the Job Training 
Partnership Act (JTPA) and most recently, the Workforce Investment Act 
(WIA). WIA was passed as a direct result of the work done by you and 
your colleagues, and we thank you.
    Today, although almost 6 years have passed since WIA was 
implemented, nothing has changed that should alter the intent 
demonstrated by the establishment and continuation of this program 
effort to serve the Farmworkers of this nation. Unfortunately, as 
grantees--and foremost as advocates--for Farmworkers and their needs, 
we have found ourselves continuously defending the Farmworker program 
and advocating for adequate funding. We also have recognized that, 
although Congress has clearly demonstrated its wishes in EVERY jobs 
program since 1973, the U.S. Department of Labor continues to zero out 
funding for this vital program, while at the same time hailing it as 
one of their most successful.\1\
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    \1\ Workforce System Results, www.dol.gov, page 6.
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    Although it may seem cliche in 2004, we are still forced to ask the 
question: ``Are Farmworkers better served today than they would be if 
no program existed?'' The answer is an unqualified ``Yes.'' NFJP 
nationally had an 84.6 percent successful placement rate (Entered 
Employment Rate) for Farmworkers who entered training in PY 2002 (July 
2002 to June 2003).\2\ According to USDOL statistics as of 30 September 
2003, ROI--across our entire service area--had a 100 percent success 
rate in placing Farmworkers in jobs after training.
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    \2\ PY 2002 Preliminary Grantee performance for the NFJP, 
wdsc.doleta.gov/msfwPY02.
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    Why does the Office of Management and Budget in their program 
analysis question the actions of Congress in establishing emergency and 
supportive services? We are directed by Section 167 of the Workforce 
Investment Act to provide emergency and supportive services to 
stabilize the agriculture workforce. Ensuring that our nation's 
agricultural employers continue to have access to a stable agricultural 
workforce required less than 9 percent of the total funds appropriated 
for the NFJP. Agricultural stabilization services that meet the short 
term emergency needs of Farmworkers enable them to be available for 
work in our nation's fields at peak harvest times.
    With regard to the impact of NFJP job placement, ROI statistics \3\ 
for PY 2002 show an average wage gain of $5,611 in Pennsylvania, $4,372 
in New York, $6,519 in New Jersey and $3,925 in Ohio. The national 
average across all NFJP programs for the same wage measure is 
$4,413.\4\ Ironically, the average wage gain reported by the One Stop 
system for the same period was only $3,094,\5\ while serving a 
population confronted by far fewer barriers to employment.
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    \3\ Rural Opportunities Inc. Management Information System, PY 
2002.
    \4\ Workforce System Results, www.dol.gov, page 6.
    \5\ Workforce System Results, www.dol.gov, page 7.
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    As compelling as this economic information is, nothing speaks 
louder than the words of the participants, your constituents, who have 
begun to experience the American dream. I have requested and received 
permission from some of our participants to use their stories in this 
testimony.
    To set the background for these stories, let me describe the 
typical Farmworkers served in the NFJP programs Rural Opportunities 
Inc. operates. The average participant is a young Hispanic male or 
female. Of those served in PY 2002, 91.6 percent were Hispanic, 64.7 
percent were 21-44 years old, 71.5 percent had limited English speaking 
skills and 84.8 percent dropped out during or before high school. Most 
were members of families who had been working in agriculture since 
their birth. In fact, over 69 percent knew agriculture as their only 
work experience. These are the very characteristics that would preclude 
our program participants from being served by the local One Stop.
    Ofelia Carmona is an Hispanic woman aged 41. She was born into a 
Farmworker family. At age 6, she began working in the fields with her 
13 brothers and sisters. Married at age 14, Ofelia dropped out of 
school and began migrating with her husband, and soon children, to the 
fields and orchards of the Northeast. While pregnant with her 4th 
child, she and her husband decided they wanted more for their children. 
With the help of Rural Opportunities Inc., Ofelia pursued her GED. She 
attended GED class in the morning and work experience at a Migrant 
Health Clinic each afternoon. After completing her GED, Ofelia was 
hired full-time by the Clinic. But she was not through with her 
efforts; Ofelia returned to Community College and, while continuing her 
full-time employment, obtained a Nursing Assistant Associates Degree. 
Today, Ofelia is the Director of a Migrant Head Start Center and is 
working to achieve a Bachelors Degree in Early Childhood Education.
    Juan Luna's story is not unlike that of Ofelia; Juan is a 36-year-
old Hispanic male. He dropped out prior to completing high school, had 
limited English speaking skills and no transportation, and his only 
work experience had been as a migrant following the crops. He was not 
in a position to enter the traditional job market. ROI began by helping 
Juan access English as a Second Language classes. Then, when his 
English skills had begun to improve, ROI assisted him in entering 
Occupational Skills Training at the Metal Working Institute, where he 
learned the skills to become a Machinist. Today, Juan is employed with 
the Hauser Corporation as a machine operator and will soon complete his 
second year on the job.
    Cipriano Rodriguez migrated from Mexico 12 years ago to pick 
apples. Discouraged by the poor pay, he finally left farm work after 
many years for a factory job, although his interest in agriculture 
remained strong. Learning of the services provided by Rural 
Opportunities, Inc., he established the goal of obtaining his 
Commercial Driver License and returning to agriculture--and his love 
for the land. He completed training and passed the required tests, and 
was able to obtain year-round employment at a large farm in the Hudson 
Valley, driving produce to processing and storage facilities. Four 
years ago, he became a United States citizen.
    Ofelia, Juan, Cipriano . . . these are not the customers of the 
traditional One Stop system. These are the customers of the National 
Farmworker Jobs Program grantees. They are not unlike the 328 
participants ROI assisted to gain full-time, year-around employment in 
PY 2002.\6\
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    \6\ www.workforceatm.org
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    NFJP program served 5,612 Farmworkers in PY 2002 nationwide.\7\ 
Without NFJP, who would serve these individuals? The One Stop system? 
The same system that served less than 1 percent of this population in 
PY 2002? The One Stop system does not have language or culturally 
appropriate staff and cannot be expected to develop appropriate 
staffing in a few short months. The One Stop system does not do 
outreach to overcome Farmworkers' barriers to services, such as lack of 
transportation, isolation, and sunrise to sunset workdays. Nor can 
Farmworkers, if they somehow manage to access the One Stop system, be 
expected to use a computerized system for job search assistance and 
labor market information--a system targeting high school graduates, an 
education level far beyond that attained by the average Farmworker.
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    \7\ www.workforceatm.org
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    Throughout our history, Rural Opportunities Inc. has always sought 
to assist Farmworkers in achieving their dreams by placing them in jobs 
of their choosing--within or outside of agriculture. Often Farmworkers 
wish to upgrade skills to stay on the farm and find a full-time job in 
agriculture or an agriculture-related industry. In PY 2002, 
agricultural upgrades accounted for 30 percent of all of the jobs in 
which ROI assisted Farmworkers to find placements. In Pennsylvania, we 
have achieved significant success in the past by working with the 
Mushroom Industry to design and implement job training. In New York, we 
have done the same with the Dairy Industry. ROI continues to experience 
high demand from Farmworkers for training in welding and in obtaining 
Class I Licenses, both of which secure higher paying year-round 
employment on the farms. Ironically, a concern we often hear from those 
in Agriculture and Ag-related Industries is that their interests are 
not met by the primarily urban or village-based One Stop System. 
Although as a case management and individual skills-based effort NFJP 
does not train as many Farmworkers for skilled farm positions as the 
Industry would like, NFJP does address the Industry's needs.
    In his March 2004 presentation to the ROI Board of Directors, 
George Lamont, a New York State Grower and Executive Director of the 
New York State Horticultural Association, presented his hierarchy of 
needs for the Farmworkers he employs: Job Skills Training and English 
as a Second Language were two of the top three.
    The One Stop Delivery System often has recognized how under-
equipped it is to meet the needs of the Farmworker population and 
supports the continuation of the National Farmworker Jobs Program, as 
evidenced in the following excerpts:
  --Your agency's interaction with migrant and seasonal farmworkers, a 
        population that is traditionally underserved by other agencies, 
        is integral to their well-being.\8\
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    \8\ Joseph Kuchere, Workforce Investment Board Chair, Niagara 
County Workforce Investment Board, letter of support, 2003.
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  --We realize that without the services provided by the NFJP, 
        farmworkers would not have access to training and job placement 
        outside of agriculture due to the multi-barriers many of them 
        possess. The removal of these barriers requires staff that has 
        the skills and cultural sensitivity to assist this special 
        population as well as those who can provide services evenings 
        and weekends to meet the critical demand of migrant and 
        seasonal farmworkers.\9\
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    \9\ Ana Maria Murabito, Council of Industry of Southeast New York, 
letter of support, 2003.
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  --You have provided these services and truly changed the lives of 
        hundreds of farmworkers by providing needed tools that lead to 
        self-sufficiency for them and their families.\10\
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    \10\ Ibid.
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  --Your agency staff has the needed skills and cultural sensitivity to 
        assist this population to overcome barriers pertaining to self-
        sufficiency for themselves and their families.\11\
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    \11\ Glenn L. Decker, Commissioner of Social Services, Ulster 
County, letter of support, 2003.
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    The National Farmworker Jobs Program grantees have developed a 
sophisticated service delivery infrastructure in the past 30+ years, 
capable of meeting farmworkers' needs and generating high levels of 
success. As an NFJP grantee, Rural Opportunities Inc. has built a 
support structure of additional resources that allows us to leverage 
NFJP dollars--for every $1 provided by NFJP, we can bring an additional 
$3 to bear on the host of problems faced by Farmworkers in each state 
we serve. The NFJP is more successful because of this and the 
Farmworker population is far better served. ROI has been recognized for 
the fact that 96 cents of every funding dollar go to client 
services.\12\
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    \12\ Rochester Business Journal, Non-profit Agencies Vary Widely in 
Outlay for Overhead Expenses. January 4, 2002; Volume17; Number 40.
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    In closing, ROI requests that the Subcommittee recommend an 
appropriation of $80,000,000--restoring the NFJP program to full 
funding and recognizing the enormous potential of the NFJP program 
grantees. Though this appropriation will not ensure that every eligible 
Farmworker receives the services needed, it will enable the program to 
hold its ground in providing high quality, culturally appropriate 
services to this population so desperately in need.
                                 ______
                                 
    Prepared Statement of the California Workforce Investment Board
    My name is Morgan Clayton, Chairman of the Kern County California 
Workforce Investment Board. I whole-heartedly support the continued 
funding of the National Farmworkers Jobs Program, as authorized in 
section 167 of the Workforce Investment Board (WIA). While our Board 
represents a Grantee for this program, we also serve as the Local Area 
for the WIA formula-funded programs in the California counties of Kern, 
Inyo and Mono. From this unique perspective we have come to appreciate 
the need for the National Farmworker Jobs program and urge its 
continued full funding in fiscal year 2005 and beyond.
    In providing services to both Farmworkers and the general 
population for more than 20 years, it has become clear that the farm 
workers have unique needs in the areas of basic skills, Vocational 
English-as-a-Second Language, job training and access to available 
services. A separate program ensures that these needs continue to be 
addressed. While we continue to enjoy many successes in serving farm 
workers through our network of rural one-stop career centers, those 
one-stops simply could not exist without a serious commitment of 
federal funding to targeted rural workers, especially farm workers.
    On behalf of the Workforce Invest Board of Kern County, I am adding 
our support for the continued, full funding of the National Farmworker 
Jobs Program.
                                 ______
                                 
   Prepared Statement of the National Association of State Workforce 
                                Agencies
    Chairman Specter, Senator Harkin, and distinguished Members of the 
Subcommittee. On behalf of the National Association of State Workforce 
Agencies, I thank the Subcommittee for the opportunity to share 
information on the contributions our members provide in strengthening 
our nation's economy by linking workers and jobs. The members of our 
association constitute state leaders of the publicly-funded workforce 
investment system vital to meeting the employment needs of business and 
workers. It is the funding you appropriate that makes much of the 
workforce system services and infrastructure possible.
    Mr. Chairman, the nation's publicly-funded workforce system 
continues to build on the critical link between businesses in need of 
employees and workers in need of employment. The state agencies 
administering job training and employment assistance programs 
throughout our country are cognizant of the need to provide effective 
services. We recognize it is no longer enough to wait for a dislocated 
worker to walk through the door of our one-stop offices, or for the 
phone to ring from a prospective employer in need of skilled workers. 
Instead, the workforce system is transforming its operations to meet 
employer demands for skilled workers in the 21st century.
    One can look at the latest Workforce System Results report 
published by the Employment and Training Administration (ETA) for 
evidence of our workforce system's performance and continued 
improvement. This report shows state workforce programs ``are either 
meeting their Government Performance and Results Act (GPRA) goals, or 
have improved their performance from the previous year.'' These results 
were achieved while our nation's economy continues its recovery with 
sustained high demand on our system. Although the system continues to 
improve, we are concerned the upward trend in performance might level 
off in the near future if it does not obtain sufficient resources to 
meet an ever-growing demand.
    A recent survey of state workforce agency administrators yields a 
consistent concern that the infrastructure needed to maintain services 
business and workers have come to expect is aging and in need of 
repair. We are becoming increasingly aware of limitations to the 
expectation that we can do more with less and the effect of level or 
reduced funding on the quality and quantity of our services. Although 
we strive to continue improving our service levels regardless of our 
annual appropriations, under funding of our programs makes state 
decision-making harder and ultimately can lesson the quality and 
quantity of services we will be able to provide.
           state unemployment insurance administration grants
    The Social Security Act requires the Secretary of Labor to allocate 
grants to states that are necessary for proper and efficient 
administration of their unemployment insurance programs. However, the 
President's budget has not proposed sufficient amounts and Congress has 
often appropriated less than the President's insufficient request for 
many years. The result is states often receive less than is necessary 
for proper and efficient administration of their unemployment 
compensation programs.
    Insufficient funding has forced many states to delay indefinitely 
technological upgrades. Many states are unable to automate their aging 
benefits and tax systems. The inability to improve infrastructure 
hampers states ability to combat fraud, such as identity theft and 
unemployment tax evasion.
    NASWA's request for state administration of unemployment 
compensation in fiscal year 2005 exceeds the Administration's request 
by $439 million, totaling $3.140 billion. This amount is estimated to 
be necessary for the states to operate their unemployment compensation 
programs properly. We believe this amount is necessary because a new 
budget formulation and allocation system, known as the Resource 
Justification Model (RJM), provides estimates of the amounts states 
need for proper and efficient administration of the UI program.
    NASWA also requests Congress enact an immediate transfer of $9 
billion as a special Reed Act distribution to state trust fund accounts 
to improve trust fund solvency, avoid employer tax hikes, and improve 
UI administration, employment services and unemployment benefits. 
Unemployment trust fund solvency has continued declining during the 
past year. State unemployment trust fund balances fell from $51.57 
billion on September 30, 2001 to $28.13 billion on September 30, 2003. 
Benefits increased from $27.35 billion in fiscal year 2001 to $41.8 
billion in fiscal year 2003. Six months ago, one state borrowed to 
maintain trust fund solvency. Today eight states are borrowing. Many 
other states are planning to borrow or substantially increase state 
unemployment taxes or cut unemployment benefits to maintain trust fund 
solvency.
    If a transfer of $9 billion as a Reed Act distribution does not 
occur in the next five months, many states will be forced to borrow, 
cut benefits, or collect additional revenue through state unemployment 
payroll taxes on employers. Collection of additional employer taxes is 
unnecessary given the $19.9 billion balance credited to the federal 
unemployment trust fund accounts. Using already-paid employer 
unemployment taxes for the UI and ES programs is a far better purpose 
during this period of high unemployment than merely maintaining 
balances in federal trust fund accounts.
    Mr. Chairman, as you know the workforce system received an $8 
billion Reed Act distribution in 2002. Some in Congress and the 
Administration have said states are ``sitting'' on these funds, not 
using them in valuable ways. We can assure you that this is not the 
case. A recent survey of NASWA members found states have used all of 
the 2002 distribution for economic stimulus, improved UI benefits and 
administration and employment services. The $8 billion allowed states 
to cut unemployment payroll taxes for employers by more than $4 billion 
and improve state unemployment trust fund solvency, unemployment 
insurance administration and employment services. A Reed Act 
distribution in 2004 would stimulate further the economy by allowing 
many states to avoid raising employer taxes that will increase the cost 
of hiring new employees and slow the rate of job creation.
         workforce investment act & employment service programs
    ETA Assistant Secretary DeRocco recently said in her testimony 
before this subcommittee, the WIA programs that are delivered by the 
state and local workforce partners continue to meet or substantially 
meet the majority of their established performance targets this past 
year. Some 83 percent of adults and 89 percent of dislocated workers 
were still working in the third quarter following receiving services 
against respective GPRA targets of 80 percent and 88 percent 
respectively. After receiving services, adults increased their annual 
earnings on average by $3,030 and dislocated workers averaged 88 
percent of their pre-dislocation earnings.
    For older youth ages 19 to 21 receiving services by the publicly-
funded workforce system, 70 percent were employed in the first quarter 
after receiving services. Sixty-three percent of younger youth (ages 14 
to 18) who entered the program without a high school diploma or 
equivalent, attained a diploma or equivalent by the first quarter after 
receiving services.
    In order to meet the needs of both workers and businesses over the 
coming year, NASWA recommends the following funding levels for WIA 
programs for fiscal year 2005: $1.5 billion for dislocated worker state 
allocations; $950 million for adult training; and $1.128 billion for 
youth training activities. These amounts represent the funding levels 
allocated for the system in fiscal year 2002.
    Our members are concerned about the Administration's proposed 
funding cut of $91 million to Employment Service (ES) programs and the 
elimination of the $35 million for Reemployment Services. Funding for 
employment services has not been increased in over 8 years. However, 
most states have supplemented their budget with state or Reed Act 
funds. While NASWA members can support funding for new initiatives 
proposed by the Administration ($250 million for Community Colleges, 
$50 million for piloting Personal Reemployment Accounts, and $35 
million for the Prisoner Reentry Initiative), they are concerned about 
reductions to existing programs.
    NASWA requests $330.5 million more than was requested by the 
Administration for fiscal year 2005 employment service state allotments 
for a total of $991.7 million. In many parts of the country, the one-
stop career centers are built on the ES program. The Administration, 
state workforce agencies, and local One-Stop centers have accepted a 
new focus on the business customer. The majority of services provided 
to the business community have been provided with ES funds. During the 
period ending December 31, 2003, the ES provided service to 9.2 million 
applicants.
                           trade act funding
    Each year, many states deal with a shortfall of funding for worker 
training benefits under the Trade Act. States have been forced to 
freeze spending and turn many workers away. Turning workers away has 
become especially prevalent over the past few years as the number of 
trade impacted workers rises. We look forward to working with Congress 
on finding sufficient spending levels for trade programs in fiscal year 
2005.
                        labor market information
    NASWA supports a return to ETA's earlier investment levels of $150 
million for one-stop/America's Labor Market Information System (ALMIS) 
funding. The importance of adequate funding to state agencies for labor 
market information has intensified as states attempt to work with the 
Administration on its new ``high growth job training initiative.'' 
State and local labor market information and high quality employment 
projections are critical to the identification of industry sectors and 
occupations where the employment growth will occur and ensure that 
training dollars are wisely invested.
    NASWA also calls for the Administration's leadership and support 
for funding of the new collaborative effort between the Bureau of Labor 
Statistics and the Bureau of Census to develop a unified wage record 
program. This new effort will afford better measurement of program 
performance and improved understanding of the labor market.
               veterans employment and training programs
    Two year's ago, Congress approved the Jobs for Veterans Act, giving 
states greater flexibility to serve their veteran populations. NASWA 
supported many provisions in this legislation, especially those that 
gave states more flexibility in integrating the veterans' employment 
and training programs into the one-stop career center system.
    The Jobs for Veterans Act requires states to submit to the 
Secretary of Labor, ``a plan that describes the manner in which the 
state shall furnish employment, training, and placement services 
required under this chapter for the program year.'' NASWA members 
believe the annual plan required by the Jobs for Veterans Act will be 
greatly improved by moving the funding for these programs from a fiscal 
year to a program year funding cycle. By transitioning funding to a 
program year (July 1 to June 30) and aligning it with most other 
employment and training programs, the plans that state workforce 
agencies submit to the Department will reflect future program year 
services based on established budget outlays. Program year funding 
supports integrating VETS-funded programs into WIA one-stop career 
center systems and planning and performing on the same cycle as other 
one-stop partners. The workforce system looks forward to another year 
of high performance and improvement. NASWA greatly appreciates your 
support. Thank you for considering our request.
                                 ______
                                 
     Prepared Statement of the National Youth Employment Coalition
    On behalf of the National Youth Employment Coalition (NYEC) and its 
more than 270 members, I am writing to thank you for being the champion 
for the Department of Labor's Reintegration of Young Offenders program. 
If not for your heroic efforts, this small, yet important program would 
have ceased to exist years ago.
    As you know, the Administration's fiscal year 2005 budget proposes 
to supplant the $49 million Reintegration of Young Offenders program 
with a new $90 million Prisoner Reentry Program. While NYEC applauds 
the Administration for its commitment to helping adult prisoners 
successfully return to society, details are still vague about how or 
whether this new program would involve young offenders. Additional 
resources to help reintegrate adult prisoners to society should not 
come at the expense of existing programs that help reintegrate 
incarcerated youth and prevent other court-involved youth from 
recidivating and being incarcerated.
    According to the Bureau of Justice Statistics, approximately 
120,000 youth under the age of 18 are currently incarcerated in 
juvenile detention centers, state prisons, and local jails. Most will 
be released in the next few years. While youth in general are being 
hard hit by the sluggish economy, court-involved youth face additional 
barriers to employment. There is a growing consensus among youth 
development experts that youth who come under court supervision have 
multiple issues that must be addressed in comprehensive and coordinated 
ways, if they are to attain employment at wages that will sustain a 
constructive life path. DOL's Youth Offenders Demonstration grantees 
provide coordinated services to young offenders, gang-involved youth, 
and at-risk youth to help them find employment, reduce dependency, and 
break the cycle of crime and recidivism. Court-involved youth who are 
at-risk of being incarcerated, and youth already in secure facilities 
receive training and employment opportunities in addition to education; 
substance abuse treatment as needed; mental health services; aftercare; 
housing assistance and family support services; and juvenile justice 
supervision. Several of our members have received competitive grants 
through the Reintegration of Young Offenders program in the past and 
many others plan to apply when the Department of Labor announces that 
funds are available for the fiscal year 2003 grant cycle.
    We must sustain our national investment in services and support for 
court-involved youth to enable these youth to positively contribute to 
their communities. Without resources such as the Responsible 
Reintegration of Young Offenders program, many more will fail to 
successfully transition into productive employment and instead will 
join the more than 2 million people currently incarcerated.
    Again, thank you so much for your long-standing commitment to 
court-involved youth.
                                 ______
                                 
     Prepared Statement of the National Youth Employment Coalition
    The National Youth Employment Coalition (NYEC) is a network of over 
270 youth employment, education, and development organizations 
dedicated to promoting policies and initiatives that help young people 
succeed in becoming lifelong learners, productive workers and self-
sufficient citizens. We urge you to increase federal funding for youth 
employment/development programs under the Workforce Investment Act 
(WIA). In addition, we urge you to restore funding for the 
Reintegration for Young Offenders Program to its fiscal year 2003 level 
of $54 million, and ensure that these funds continue to be targeted at 
helping reintegrate incarcerated young offenders and prevent court-
involved youth from recidivating or being incarcerated.
    We understand that this year's federal budget is particularly tight 
and we face a historically large deficit. However, our nation is facing 
a silent crisis--hundreds of thousands of youth are not being provided 
the opportunities they need to develop the academic and job skills they 
need to succeed in the 21st century workplace. We continue to hear 
reports that youth are having difficulty finding jobs in this sluggish 
economy because many employers are hiring adults for jobs for which 
they would hire youth in a tighter labor market. These reports are 
confirmed by the Bureau of Labor Statistics' January 2004 data, which 
shows that youth (age 16 to 19) have lost more than one million jobs 
since January 2000; and only 34 percent of youth were employed (part- 
or full-time) in January 2004--marking the lowest youth employment rate 
for the month of January since 1965.
    Despite record levels of youth joblessness, combined federal 
funding for the WIA youth formula and the Youth Opportunity Grant 
Program has been cut by more than 26 percent--from $1.352 billion in 
fiscal year 2002 to $995 million in fiscal year 2004. The 
Administration's fiscal year 2005 budget proposes a slight increase to 
$1.001 billion for the WIA youth formula; however, the House WIA 
reauthorization bill and the President's reauthorization plan propose 
using 25 percent of the formula funds to launch a new National 
Challenge Grant program. While we support new programs that help youth 
prepare for jobs and careers and prevent them from dropping out of 
school, funding for such a new program should not come at the expense 
of current programs that are already stretched to the breaking point.
    We cannot afford to allow our nation's youth development/employment 
system to erode further. Therefore we were very pleased to learn that 
the Senate's fiscal year 2005 budget resolution includes an amendment, 
sponsored by Senators Enzi (R-WY) and Cantwell (D-WA), that would 
increase WIA funding by $250 million in fiscal year 2005. We urge you 
this year to begin increasing funds for the WIA youth formula to 
restore funding to the $1.4 billion level. An additional $250 million 
should be provided in the event that the new National Challenge Grant 
program is authorized as a result of WIA reauthorization.
    The Administration's fiscal year 2005 budget also proposes to 
supplant the $49-million Young Offenders program with a new $90-million 
Prisoner Reentry Program. While NYEC applauds the Administration for 
its commitment to helping prisoners successfully return to society, 
details are still vague about how or whether this new program would 
involve youth. Additional resources to help reintegrate adult prisoners 
to society should not come at the expense of existing programs that 
help reintegrate incarcerated young offenders and prevent court-
involved youth from recidivating or being incarcerated. At minimum, 
funds currently targeted at court-involved youth under the 
Reintegration for Young Offenders Program should be maintained to 
fiscal year 2003 levels ($54 million) and set aside for young offenders 
within the structure of the new prisoner reentry program.
    According to the Bureau of Justice Statistics, approximately 
120,000 youth under the age of 18 are currently incarcerated in 
juvenile detention centers, state prisons, and local jails. Most will 
be released in the next few years. While youth in general are being 
hard hit by the sluggish economy, court-involved youth face additional 
barriers to employment. There is a growing consensus among youth 
development experts that youth who come under court supervision have 
multiple issues that must be addressed in comprehensive and coordinated 
ways, if they are to attain employment at wages that will sustain a 
constructive life path. DOL's Youth Offenders Demonstration grantees 
provide coordinated services to young offenders, gang-involved youth, 
and at-risk youth to help them find employment, reduce dependency, and 
break the cycle of crime and recidivism. Court-involved youth who are 
at-risk of being incarcerated, and youth already in secure facilities 
receive training and employment opportunities in addition to education; 
substance abuse treatment as needed; mental health services; aftercare; 
housing assistance and family support services; and juvenile justice 
supervision.
    We understand that you face difficult decisions this year as you 
seek to spread limited federal resources for a range of national needs. 
Yet we must sustain our national investment in services and support 
disadvantaged youth to enable these young people to positively 
contribute to their communities. Without resources such as the WIA 
youth formula and the Responsible Reintegration of Young Offenders 
program, many more will fail to successfully transition into productive 
employment.
    We thank the Committee for its attention to these important 
programs for our youth and our emerging workforce.
                                 ______
                                 
   Prepared Statement of the National Coalition for Homeless Veterans
                              introduction
    The National Coalition for Homeless Veterans appreciates the 
opportunity to submit recommendations on fiscal year 2005 
appropriations for and program management issues related to the U.S. 
Department of Labor (DOL).
    The National Coalition for Homeless Veterans (NCHV), established in 
1990, is a nonprofit organization with the mission of ending 
homelessness among veterans by shaping public policy, promoting 
collaboration, and building the capacity of service providers. NCHV's 
nearly 250 member organizations in 42 states and the District of 
Columbia provide housing and supportive services to homeless veterans 
and their families, such as street outreach, drop-in centers, emergency 
shelter, transitional housing, permanent housing, recuperative care, 
hospice care, food and clothing, primary health care, addiction and 
mental health services, employment supports, educational assistance, 
legal aid and benefit advocacy.
    The VA estimates that more than 299,000 veterans are homeless on 
any given night; more than 500,000 experience homelessness over the 
course of a year. Conservatively, one of every three homeless adult 
males sleeping in a doorway, alley, box, car, barn or other location 
not fit for human habitation in our urban, suburban, and rural 
communities has served our nation in the Armed Forces. Homeless 
veterans are mostly males (2 percent are females); 54 percent are 
people of color. The vast majority are single, although service 
providers are reporting an increased number of veterans with children 
seeking their assistance; 45 percent have a mental illness; 50 percent 
have an addiction.
    America's homeless veterans have served in World War II, Korea, the 
cold war, Vietnam, Grenada, Panama, Lebanon, anti-drug cultivation 
efforts in South America, Afghanistan, and Iraq. 47 percent of homeless 
veterans served during the Vietnam Era. More than 67 percent served our 
nation for at least 3 years and 33 percent were stationed in a war 
zone.
    Male veterans are twice as likely to become homeless as their non-
veteran counterparts, and female veterans are about four times as 
likely to become homeless as their non-veteran counterparts. Like their 
non-veteran counterparts, veterans are at high risk of homelessness due 
to extremely low or no income, dismal living conditions in cheap hotels 
or in overcrowded or substandard housing, and lack of access to health 
care. In addition to these shared factors, a large number of at-risk 
veterans live with post traumatic stress disorders and addictions 
acquired during or exacerbated by their military service. In addition, 
their family and social networks are fractured due to lengthy periods 
away from their communities of origin. These problems are directly 
traceable to their experience in military service or to their return to 
civilian society without appropriate transitional supports.
    Contrary to the perceptions that our nation's veterans are well-
supported, in fact many go without the services they require and are 
eligible to receive. One and a half million veterans have incomes that 
fall below the federal poverty level. Neither the VA, state or county 
departments of veteran affairs, nor community-based and faith-based 
service providers are adequately resourced to respond to these 
veterans' health, housing, and supportive services needs. The VA plays 
only a limited role in providing employment services to veterans, 
administering just one small supported employment program for veterans 
with serious disabilities.
    The U.S. Department of Labor and state and local workforce agencies 
bear primary responsibility for ensuring that veterans are provided 
opportunities to prepare for and obtain productive employment. 
Accordingly, we urge Congress to provide full funding for the programs 
of the Department of Labor Veterans Employment and Training Service 
(VETS) in order to ensure that our nation's workforce services system 
is equipped to fulfill their obligations to our nation's veterans.
    fiscal year 2005 appropriation recommendation--homeless veteran 
                         reintegration program
    The Homeless Veterans Reintegration Program (HVRP), within the 
Department of Labor's Veterans Employment and Training Service (VETS), 
provides competitive grants to community-based, faith-based, and public 
organizations to offer outreach, job placement and supportive services 
to homeless veterans. HVRP is the primary employment services program 
accessible by homeless veterans and the only targeted employment 
program for any homeless subpopulation. Homeless veterans have many 
additional barriers to employment than non-homeless veterans due to 
their lack of housing. HVRP grantees remove those barriers through 
specialized supports unavailable through other employment services 
programs. Grantees are able to place HVRP participants into employment 
for $2,100 per placement, a tiny investment for moving a veteran out of 
homelessness, and off of dependency on public programs.
    DOL estimates that 16,800 homeless veterans will be served through 
HVRP at the fiscal year 2004 appropriation level of $19 million. This 
figure represents just 3 percent of the overall homeless veteran 
population, which the Department of Veterans Affairs estimates numbers 
more than 500,000 over the course of a year. An appropriation at the 
authorized level of $50 million would enable HVRP grantees to reach 
approximately 44,000 homeless veterans.
    HVRP grants are funded on a 3-year cycle. DOL representatives have 
indicated that if funding is not increased for the program this year, 
it is unlikely there would be a competition for new start grants in 
fiscal year 2005. Additionally, HVRP is being used as the account to 
fund a joint Department of Labor and Department of Veterans Affairs 
initiative authorized by Congress to assist veterans incarcerated in 
their reentry to the community. This decision essentially adds a new 
purpose to the HVRP program, for which additional funds are needed.
    We urge Congress to appropriate at least $50 million for HVRP in 
fiscal year 2005 Labor-HHS-Education appropriations legislation.

                                            [In millions of dollars]
----------------------------------------------------------------------------------------------------------------
                                                                                Fiscal year
                                                          ------------------------------------------------------
                                                                                          2005
                                                               2003         2004     administration   2005  NCHV
----------------------------------------------------------------------------------------------------------------
Funding for Homeless Veterans Reintegration Program......         18.2         19.0           19.0          50.0
----------------------------------------------------------------------------------------------------------------

   fiscal year 2005 appropriation recommendation--veterans workforce 
                           investment program
    The Veterans Workforce Investment Program (VWIP), within the 
Department of Labor's Veterans Employment and Training Service (VETS), 
provides grants to states and community-based, faith-based, and local 
public organizations to offer workforce services targeted to veterans 
with service connected disabilities, with active duty experience in a 
war or campaign, recently separated from the service, or facing 
significant barriers to employment (including homelessness). VWIP 
grants last for twelve months and currently have a limit of $255,000. 
The fiscal year 2004 appropriation for VWIP is $7.5 million.
    At least 80 percent of total VWIP funds is distributed via 
competition. State governments have traditionally been the exclusive 
eligible applicant for competitive funds. The states then publish 
requests for proposals, to which local governments, workforce 
investment boards, and community organizations may respond. The states 
monitor the projects and frequently provide matching funds to increase 
opportunities. While matching funds are not required, applicants can 
gain up to ten points on their application if they demonstrate 
effective leveraging. In 2003, VWIP competitive funds were awarded to 
state agencies in AL, CA, HI, IN, ME, MA, PA, TN, and TX.
    VETS may reserve 20 percent of total VWIP funds for discretionary 
grants. VETS uses discretionary funds for studies, demonstration 
projects, and additional funding to supplement competitive grants. 
Discretionary grant applications are accepted directly from local 
governments, workforce investment boards, community-based, and faith-
based organizations. In 2003, VWIP discretionary funds were awarded to 
organizations in CA, DC, FL, MS, NY, SC, OH, PA, and VA.
    Both those agencies that receive VWIP funds and those hoping to 
apply face the problem of resource scarcity. Due to funding 
limitations, agencies and organizations receive VWIP funds in only 16 
states. The need for the type of targeted assistance that VWIP offers 
is clearly needed in all states. Additionally, caps on the size of 
grant awards make it difficult for existing grantees to recruit and 
retain staff. This limits program effectiveness and the collaborative 
process.
    We urge Congress to appropriate at least $33.5 million for VWIP in 
fiscal year 2005 Labor-HHS-Education appropriations legislation.

                                            [In millions of dollars]
----------------------------------------------------------------------------------------------------------------
                                                                                Fiscal year
                                                          ------------------------------------------------------
                                                                                          2005
                                                               2003         2004     administration   2005  NCHV
----------------------------------------------------------------------------------------------------------------
Funding for Veterans Workforce Investment Program........          7.5          7.5            7.5          33.5
----------------------------------------------------------------------------------------------------------------

program management recommendation--priority of service for veterans in 
                       dol job training programs
    The Jobs for Veterans Act (Public Law 107-288) establishes a 
priority of service for veterans in the receipt of employment, 
training, and placement services provided under qualified job training 
programs of the Department of Labor. We request the Committee's 
assistance in ensuring that qualified job training programs fully 
extend priority of service for veterans as required by this law.
    We recommend that the Committee, through report language, urge the 
Secretary of Labor to ensure that states, localities, and nonprofit 
organizations receiving workforce investment funds from the Department 
of Labor screen all applicants for services for military service status 
and implement the priority for those qualified. Further, we recommend 
that the Committee urge the Secretary of Labor to develop and 
disseminate a guide for veterans in accessing workforce investment 
services.
    In addition, we recommend that the Committee encourage the 
Secretary to develop and disseminate a guide for assisting veterans 
service organizations and homeless veteran service providers in 
accessing workforce investment funds and workforce investment planning 
processes. Also, we recommend that the Committee encourage the 
Secretary to develop and disseminate a technical assistance guide to 
inform state and local workforce systems on the workforce services 
needs of veterans, the current limitations of veteran-specific programs 
in meeting those needs, and the responsibility of mainstream workforce 
systems to prioritize veterans for services and to collaborate with 
homeless veteran service providers and veterans service organizations.
    Finally, we recommend that the Committee urge the Secretary to 
compel state workforce agencies to increase their outstationing of 
disabled veterans outreach program specialists and local veterans 
employment representatives in locations where homeless veterans 
congregate, including grantees under the homeless provider grant and 
per diem program and the homeless veterans reintegration program.
                     transition assistance program
    Individuals leaving the military are at high risk of homelessness 
due to a lack of job skills transferable to the civilian sector, 
disrupted or dissolved family and social support networks, and other 
risk factors that preceded their military service. Separating service 
members must be made aware of the factors that contribute to 
homelessness and receive information about sources of preventive 
assistance before they exit the military. The Transition Assistance 
Program (TAP) has been established to ease the transition of separating 
service members to the civilian sector. We are concerned that the TAP 
curriculum, which is developed and administered by the Department of 
Labor, does not currently include a component on homelessness.
    We urge the Committee, through report language, to instruct the 
Secretary of Labor to ensure that a module on homelessness prevention 
be added to the TAP curriculum. The module should include a 
presentation on risk factors for homelessness, a self-assessment of 
risk factors, and contact information for preventative assistance 
associated with homelessness.
                               conclusion
    The National Coalition for Homeless Veterans appreciates the 
opportunity to submit recommendations to Congress regarding the 
resources and activities of the U.S. Department of Labor. We look 
forward to continuing to work with the Appropriations Committee in 
ensuring that our federal government does everything within its grasp 
to prevent and end homelessness among our nation's veterans. They have 
served our nation well. It is beyond time for us to repay the debt.
                                 ______
                                 
    Prepared Statement of the National Association of Home Builders
    On behalf of the over 215,000 members of the National Association 
of Home Builders (NAHB), as well as our workforce development arm, the 
Home Builders Institute (HBI), we thank you for the opportunity to 
submit this statement for the record on the Responsible Reintegration 
of Youth Offenders program, as well as the newly-proposed Prisoner Re-
entry Initiative.
    NAHB members are involved in home building, remodeling, multifamily 
construction, property management, subcontracting, design, housing 
finance, building product manufacturing and other aspects of 
residential and light commercial construction. Known as ``the voice of 
the housing industry,'' NAHB is affiliated with more than 800 state and 
local home builder associations around the country. NAHB's builder 
members will construct about 80 percent of the more than 1.6 million 
new housing units projected for 2004, making housing one of the largest 
engines of economic growth in the country.
    One of the most pressing problems confronting our industry has been 
a shortage of skilled workers. Record numbers in the construction of 
new homes, retirements and lackluster interest in the construction 
trades by younger generations, compounded by insufficient training 
opportunities for those interested in construction, are among the many 
factors contributing to the shortages. According to the Bureau of Labor 
Statistics, some 240,000 workers are needed each year to meet the 
nation's demand for housing.
            home builders institute (hbi) program background
    Each year, the Home Builders Institute (HBI) works through various 
programs to train and place several hundred youth in residential 
construction jobs. Through real-life, hands-on training, some of our 
nation's most at-risk youth learn a skill, and a second chance at a 
productive and successful life and career. Since 1994, HBI has focused 
a significant portion of its effort and resources on one particular 
targeted population, adjudicated youth, through its Project CRAFT 
(Community Restitution Apprenticeship-Focused Training) program. 
Project CRAFT is targeted solely to adjudicated youth and was piloted 
in 1994 through a Department of Labor demonstration grant. This program 
has successfully combined employers, the juvenile justice system, 
workforce development and other systems, in one overall approach, and 
has been implemented at 12 sites in nine states (Colorado, Ohio, 
Florida, Maryland, New Jersey, North Dakota, South Carolina, Tennessee, 
and Texas). Funding for HBI's work on this program has come largely 
through funds provided under the Responsible Reintegration of Youth 
Offenders budget line.
    Project CRAFT incorporates the apprenticeship concept of hands-on 
training and academic instruction, utilizing its Pre-Apprenticeship 
Certificate Training (PACT), numeracy, literacy and employability 
skills curricula. Under the supervision of journey-level trade 
instructors, students learn residential construction skills while 
completing community service construction projects. More than 90 
percent of Project CRAFT graduates achieve success through industry 
jobs each year. Since 1994, Project CRAFT has helped more than 2,000 
high-risk youth, and in addition to offering adjudicated youth trade 
skills and job placement, community service projects by students saved 
taxpayers more than $225,000 in labor costs alone in 2002-2003. During 
2002, Project CRAFT graduates were placed in jobs with an average wage 
of $8.29/hour, and performed over 28,000 hours of community service. 
Recidivism rates for Project CRAFT have averaged between 10-15 percent, 
with the Nashville, Tennessee program and Orlando, Florida programs 
experiencing impressive recidivism rates of 9 percent and 6 percent 
respectively. Additionally, students in the program tend to evidence 
one grade level of improvement in math and language skills attributable 
largely to the formal education component that includes contextual 
learning. Math and communication skills are continually reinforced as 
students are challenged to apply these skills to everyday situations in 
the field and in the classroom.
    Project CRAFT efforts were recognized by the Department of Labor 
and the National Youth Employment Coalition when in September 2002, the 
program received a PEPNet (Promising and Effective Practices Network) 
Award. We are also grateful to the Senate Subcommittee on Labor, Health 
and Human Services and Education for its acknowledgement of Project 
CRAFT in fiscal year 2004 Report Language, and its years of dedicated 
support for the Responsible Reintegration of Youth Offenders program.
          responsible reintegration of youth offenders program
    NAHB and HBI's encouraging experience with Project CRAFT is an 
example of the enormous success of the Responsible Reintegration of 
Youth Offenders pilot program, and the reason why we very strongly 
support the continuation of funding for a youth-focused program 
targeting adjudicated youth with training that provides this at-risk 
population with important job- and life-skills. The Responsible 
Reintegration of Youth Offenders Program has helped to bring together 
industry and government in a partnership with tangible positive 
outcomes. Since 1994 the program has earned a reputation as a 
worthwhile investment of taxpayer dollars, a significant and important 
resource to the nation's building industry, and a major contributor to 
the future success of hundreds of young people. It is a demonstration 
model that works, and as such deserves to be touted and replicated. We 
hope that its proven success and recognition as a model intervention 
will help enable it to receive continued funding.
                       prisoner re-entry program
    In its fiscal year 2005 budget proposal, the White House introduced 
a new program called the ``Prisoner Re-entry Initiative,'' with a 
stated focus to ``support activities to help individuals exiting prison 
make a successful transition to community life and long-term 
employment.'' (See fiscal year 2005 Budget Appendix, page 706) This 
program appears to have a focus only on adult offenders, and the budget 
does not clearly state whether youth-focused programs would be eligible 
to participate in the Prisoner Re-entry Program.
    NAHB and HBI support goals of the Prisoner Re-entry program, and 
agree that there is undoubtedly enormous potential for successful 
programming targeting adult offenders. However, we also strongly 
believe that it would be short-sighted policy to exclude adjudicated 
youth from the Department's workforce development efforts, and ill-
advised to bring its notable successes such as Project CRAFT to an end. 
We believe that any funding targeted to training those who are re-
entering society must include a component targeted to the youth 
offender population. We believe that the Prisoner Re-entry program, as 
laid out by the Department of Labor, has failed to clarify whether 
youth and youth-focused programs would be eligible for participation in 
the new program.
    As we have stated, the president's newly proposed Prisoner Re-entry 
program has significant potential for helping the adult offender 
community receive important training and job skills. And we believe 
that HBI is well-positioned to participate in an adult-focused program 
through its Project TRADE (Training, Restitution, Apprenticeship, 
Development and Education) program--which is the sister program to the 
youth-focused Project CRAFT. Designed to train and place adult 
offenders in employment in the home building industry, TRADE is 
currently being implemented in Colorado Springs. Project TRADE has 
trained over 500 adult offenders in the residential construction trade 
since 1995 through programs in Maryland, North Carolina, Oregon, 
Pennsylvania, Virginia, Washington, Tennessee and Colorado. We believe 
that Project TRADE's emphasis on adult offenders complements the work 
done by Project CRAFT's emphasis on youth offenders.
                               conclusion
    NAHB and HBI continue to strongly support the goals of the 
Responsible Reintegration of Youth Offenders program. We also support 
the Department of Labor's interest in targeting a program to adult 
offenders. However, we are concerned that the Department of Labor has 
not clearly laid out which populations would be served by the new 
program. Our own effort to secure from DOL a definitive understanding 
of the eligible populations has resulted in differing opinions and 
further confusion over the program's goals and targets. We believe that 
the Responsible Reintegration of Youth Offenders demonstration program 
has been highly successful, as evidenced by our own success with 
Project CRAFT, and we fervently hope that any proposal supported by 
congressional appropriators will take into account the needs of both 
the youth and adult ex-offender populations, and will clearly lay out 
congressional intent to continue serving the youth ex-offender 
population. We believe it would be an error to overlook the tremendous 
success achieved by the Responsible Reintegration of Youth Offenders 
program, and while we hope that such a move is not the intent of the 
Department of Labor, we urge appropriators to clarify the goals of the 
Prisoner Re-entry program, and to continue supporting those programs 
that target adjudicated youth.
    Again, we thank the subcommittee for this opportunity to share our 
views on the Responsible Reintegration of Youth Offenders program, and 
Prisoner Re-entry Initiative, and look forward to working with you to 
promote training programs that help America's at-risk youth acquire the 
skills they need for successful and productive careers.
                                 ______
                                 
    Prepared Statement of the Southern California Elderly Nutrition 
                              Partnership
    Chairman Specter, Ranking Member Harkin, Members of the 
Subcommittee: The Southern California Elderly Nutrition Partnership 
(SOCALENP) is submitting this written testimony in support of a 5 
percent increase in funding for the Older Americans Act Nutrition 
Programs as part of the fiscal year 2005 appropriations bill for the 
Departments of Labor and Health and Human Services.
    SOCALENP is a regional partnership formed by six major providers of 
elderly services in southern California, which serve nearly 2,500,000 
meals annually to 80,000 seniors. We are funded by a grant from the 
Altria Corporation. We came together to strengthen our advocacy voice 
not only on behalf of the seniors we serve in Southern California but 
also for all seniors who benefit from the Older Americans Act nutrition 
programs. It is important to note that these programs are more than a 
meal. They provide an essential link between seniors and their 
communities.
    California has not only the highest population in the nation but 
also the largest number of older citizens of any state. For example, 
California has 10 percent of all persons in the United States over the 
age of 65. California serves the second highest number of both 
congregate and home delivered meals of any state in the nation.
    The President's budget for fiscal year 2005, while providing a $3 
million increase for the nutrition programs, represents only a .2 
percent increase from fiscal year 2004. This means that funding did not 
even come close to keeping up with inflation. In fact, this is a 
chronic problem facing the nutrition programs. Whereas inflation has 
increased by more than 45 percent since 1990, funding for the elderly 
nutrition programs has increased by only 23.8 percent with an 
especially woeful 9 percent increase for the congregate nutrition 
program in that time.
    Furthermore, data for fiscal year 2002 indicates that the programs, 
while serving more seniors, are serving them fewer meals. This defeats 
a primary purpose of the program, which is to be able to provide these 
seniors with one third or more of their RDA's through the program. Data 
provided by AARP indicates that without any adjustment in the 
President's budget just over 5 million congregate and home delivered 
meals nationwide would have to be eliminated in fiscal year 2005. Since 
the underlying Older Americans Act calls for services to be targeted to 
the elderly especially those with the greatest economic need, the loss 
of a meal for this sector of seniors is far more devastating.
    We seek this modest increase primarily to ensure that we and other 
service providers can maintain our commitments to eligible seniors and 
avoid adding to waiting lists either in the congregate or home 
delivered meals program.
    Each member of this Subcommittee knows of Older Americans Act 
nutrition programs operating in their state. They probably have taken 
time to visit one of the sites where meals are served, which we are 
sure left a lasting memory of the need for these services. This program 
has enjoyed tremendous success over more than 30 years. It is a value-
added proposition providing essential services to seniors and doing so 
in an efficient and localized manner. These highly leveraged federal 
dollars are invested in maintaining the nutritional health and 
independence of our nation's seniors, which helps to reduce 
institutionalization, shorten hospital stays, and allow seniors to 
remain active in their communities.
    We hope you can commit the necessary $30 million to allow this 5 
percent increase to be achieved in fiscal year 2005. We believe our 
request is modest and fiscally responsible when one considers the 
return on these funds both in terms of its preventive value to the 
seniors and the ability of service provider to leverage other support 
for the programs. These programs are truly more than a meal.
                                 ______
                                 
 Prepared Statement of the Association for Professionals in Infection 
                        Control and Epidemiology
    Thank you for this opportunity to submit testimony on behalf of the 
Association for Professionals in Infection Control and Epidemiology 
(APIC).
    All of us will at some point be admitted to a hospital--or will 
visit our loved ones while they receive care at a health care facility. 
Our hospitals, the very institutions we depend upon to save our lives, 
are fighting for their survival. In recent years, only the highest risk 
patients are admitted--those individuals that require the highest level 
of care. Unfortunately, many facilities are facing severe nursing 
shortages; we have patients waiting for days in Emergency Departments . 
. . not for lack of beds, but for lack of personnel to staff the beds.
    At the very same time, we are being asked to prepare for the 
unthinkable--not just natural disasters but intentional terrorist acts 
against our citizens. As a partner in public health preparedness, we 
are dedicating resources to create the capacity to respond effectively. 
At the very time we are working with our public health partners at the 
local, state and federal levels, we are also being asked--or rather, 
required--to use our extremely limited and precious resources to meet 
unproven, unnecessary regulatory mandates. The most flagrant, and one 
that we thought we had proven had no scientific merit is the recent 
decision by the Administrator of the Occupational Safety and Health 
Administration (OSHA) to enforce the General Industry Respiratory 
Protection Standard (or GIRPS) for potential exposures to patients with 
Mycobacterium tuberculosis (MTB).
    On December 31, 2003, New Years Eve, Assistant Secretary Henshaw 
placed two notices in the Federal Register. The first notice stated 
that due to the fact that TB is at the lowest incidence level in 
recorded history, thanks to CDC guidelines and public health efforts, 
OSHA was withdrawing the proposed rule for preventing occupational 
exposure to tuberculosis. We commended the agency for this decision.
    The second notice stated, however, that OSHA intended to apply the 
General Industry Respiratory Protection Standard to exposure to 
patients with potentially infectious M. tuberculosis.
    OSHA altered its normal course of rulemaking by effecting 
significant regulatory changes without providing any opportunity for 
public review and comment. This decision was not necessary, nor was it 
precipitated by any preexisting requirement. It appears to have been 
done completely at the discretion of the OSHA Administrator.
    It has never been understood or assumed by the health care 
community that the General Industry Respiratory Protection Standard 
would apply to exposure to patients with potentially infectious TB. In 
fact, when the GIRPS was revised in 1998, the language in the standard 
specifically stated that these requirements did not apply to health 
care or to exposure to TB. The health care community therefore relied 
upon the proposed TB rulemaking for public comment regarding 
respiratory protection, instead of commenting on the revision of the 
GIRPS.
    Assistant Secretary Henshaw contends that he cannot reopen a final 
rule for comment, as we are requesting. It is our understanding that 
the OSHA Administrator can, at any time, choose to reopen a rule for 
further consideration, regardless of whether that rule is proposed or 
final. In fact, Secretary Henshaw chose to open the rule on December 
31, 2003, by announcing his decision to include exposure to TB under 
this regulation. It therefore stands to reason that he can open the 
rule again, to allow for public review and comment, as is the normal 
course of action.
    APIC respectfully requests that OSHA delay application and 
enforcement of this standard for occupational exposure to patients with 
potentially infectious TB until at least January 2005, and meanwhile 
pursue avenues to open the rule for public review and comment. It is 
vital that OSHA ensure that its decisions are based on sound scientific 
evidence, and allow for the affected parties to voice their concerns 
about the implications of these actions. We hope the Subcommittee will 
assist us by confronting OSHA on this decision, and require the agency 
to reopen the rule for adequate public consideration and comment.
    We thank you for this opportunity to provide testimony to the 
Subcommittee.
                                 ______
                                 
 Prepared Statement of the Mexican-American Opportunity Foundation and 
              the Career Services Center, Kern County, CA
    In Jalisco, Mexico in the year 1976, Roberto and Maria Sanchez had 
a little girl they named Maria. When I was 4 years old my dad brought 
our family of twelve to the USA where they worked as farmworkers to 
support us while my oldest brother took care of us. A year later I 
started kindergarten. I remember my first day. My sister took me to 
school. I grabbed her leg because I didn't want to stay. I attended 
Carl Clemens Elementary School, then Thomas Jefferson Junior High 
School for 3 years. I graduated from there in 1991 and went on to Wasco 
Union High School where I graduated in 1995.
    Three days after I graduated, I married Francisco Yerena. I 
thought, now with my new name, life will be different. In 1999, I gave 
birth to a boy. I named him Francisco. Everything seemed perfect. Being 
a young couple it was hard financially. My husband struggled as a 
seasonal farm worker trying to provide for us. I tried to attend 
Bakersfield College, but due to financial hardship, I had to quit 
school and get a job. I remember when I had my first job at Richland 
pre-school as a substitute teacher's aide and my husband left for 
Mexico to see about his papers. This made it harder for me and my son 
to survive. I knew something had to change.
    I decided to go to the Career Services Center to get a better job. 
I went to my appointment and they gave me a basic skills test. Dinorah 
Castro of Employers' Training Resource called me back about a work 
experience program at the Mexican-American Opportunity Foundation 
training center. I worked there as a receptionist for four months. 
During these four months it was hard on us financially. I traveled 
everyday from Wasco to Bakersfield. At the end of my work day, I picked 
up my son from the babysitter and by the time I got home, it was very 
late. I fixed dinner and spent what time I had with my son. My husband 
finally returned after being gone for eight months and he had to find 
employment which only took him a couple of days.
    I was so happy that the Mexican-American Opportunity Foundation's 
Administrator, Magda Menendez, referred me to the Mexican-American 
Opportunity Foundation pre-school for an interview. It was very 
exciting for me and I was so nervous waiting to hear from them. On 
February 9, 2004, they hired me as a substitute teacher and while I am 
working full time, I also attend Bakersfield College so I can get my 
teaching degree.
                                 ______
                                 

                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 41 independent, locally operated Blue Cross and Blue Shield 
Plans throughout the nation, is pleased to submit written testimony to 
the subcommittee on fiscal year 2005 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:
    I. Background, including a description of Medicare contractor 
functions;
    II. Current financial challenges facing Medicare contractors; and
    III. BCBSA recommendations for Medicare contractor fiscal year 2005 
funding.
                             i. 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 2004. In fact, contractors' administrative costs represent less than 
1 percent of total Medicare benefits.
    Medicare contractors have four major areas of responsibility:
    1. Paying Claims.--Medicare contractors process all the bills for 
the traditional Medicare fee-for-service program. In fiscal year 2005, 
it is estimated that contractors will process over 1.1 billion claims, 
nearly 4 million every working day.
    2. 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 50 million inquiries 
annually.
    3. 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.
    4. 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.
                    ii. current financial challenges
    Of utmost importance to attaining outstanding performance is an 
adequate budget. Medicare contractors have been underfunded since the 
early 1990's, however, and the largest portion of the contractor 
budget--Medicare operations--faces particularly 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.
    The underfunding of CMS and its Medicare contractors has gotten 
even more acute since the passage of the Health Insurance Portability 
and Accountability Act (HIPAA) and other legislation that places new 
responsibilities on contractors, without sufficient resources to 
perform those duties. For example, between 1992 and 2002, Medicare 
benefits outlays increased 97 percent; claims volume increased 50 
percent; yet Medicare operations funding increased a mere 26 percent. 
Contractor 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. In 
addition, the recently enacted Medicare reform legislation includes 
significant changes that will require additional resources for 
contractors to implement.
    Whenever possible, contractors respond to reduced funding by 
achieving significant efficiencies in claims processing, but it is not 
enough to keep pace with rising Medicare claims volume and diminishing 
funding levels. It should be noted that contractors are already 
extremely efficient. Currently, contractors' administrative costs 
represent less than 1 percent of total Medicare benefits.
    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 activities under the separately-funded Medicare Integrity Program 
(MIP). 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.
   iii. bcbsa fiscal year 2005 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 2005 budget does not appropriately 
reflect the expected costs to cover Medicare contractor workloads and 
it relies on a proposal for $205 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:
A. Increase Medicare Contractor Operations Funding to $1.81 Billion for 
        Fiscal Year 2005
    Medicare contractors continue to face 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:
            1. Claims processing funding must be maintained
    The President's budget would decrease Part B claims processing 
costs by $0.02 per claim to $0.63 under the assumption that 
standardized electronic transactions under HIPAA will provide savings. 
Part A claims payment remains the same at $0.87. Available contractor 
data through the first quarter of fiscal year 2004 show the HIPAA 
transactions rule has not resulted in lower claims processing costs. In 
fact the average cost for contractors to process a Part B claim is 
$0.73, and over $1 for a Part A claim. Medicare electronic claims 
submission rates were already high prior to HIPAA implementation--98 
percent of Medicare Part A and 84 percent of Medicare Part B. The 
current unit costs for processing Medicare Part B claims must be 
maintained in fiscal year 2005, requiring an additional $15.4 million.
            2. Appeals funding must be enhanced
    The President's budget provides no increase to handle ongoing 
appeals, even though CMS projects the appeals volume will rise in 
fiscal year 2005. Adequate funding is imperative for contractors to 
sufficiently handle the nearly 8 million appeals that providers and 
beneficiaries are expected to submit. BCBSA recommends an additional 
$5.5 million for these important activities.
B. Increase Medicare Integrity Program (MIP) Funding to $740 Million
    Congress created Medicare Integrity Program (MIP) under HIPAA to 
provide a permanent, stable funding authority for the portion of the 
Medicare contractor budget that is explicitly designated as fraud and 
abuse detection activities. Funding was capped at $720 million for 
fiscal year 2003 and subsequent years, however, despite continuing 
increases in claims volume (15 percent increase in claims is projected 
in fiscal years 2004-2005). This freeze in funding concurrent with 
increases in workload seriously erodes contractors' ability to fight 
fraud and abuse and ensure the accuracy and appropriateness of Medicare 
payments.
    Contractors' enhanced anti-fraud and abuse efforts due to MIP 
funding have contributed to the significant decline in improper claims 
and deficient documentation submitted by providers. In addition, MIP 
saves money. HHS data shows a $14:1 return on the investment.
            1. MIP Funding Should Be Increased
    BCBSA urges Congress to authorize an immediate increase in the MIP 
appropriation to $740 million for fiscal year 2005, with provision for 
automatic increases in future years. Medicare contractors need these 
resources to effectively combat Medicare waste, fraud and abuse and to 
keep pace with rising workloads. MIP contributes to the decline in 
improper claims submissions and it saves Medicare money. HHS data show 
a $14:1 return on the investment.
C. Reject New User Fees
    BCBSA is very concerned that once again CMS recommends new user 
fees of $205 million from doctors, hospitals and other providers to 
support contractor operations. History has shown user fees to be an 
unpredictable stream of funding. In order for contractors to maintain 
performance, funds must be consistent and reliable.
    Congress has consistently rejected user fees similar to those 
recommended in the President's budget. Congress should reject them 
again and provide $1.81 billion in appropriated funds for Medicare 
contractors and $740 million for MIP.

                                           MEDICARE CONTRACTOR BUDGET
                                            [In millions of dollars]
----------------------------------------------------------------------------------------------------------------
                                                                                   Fiscal year
                                                               -------------------------------------------------
                                                                                       2005
                                                                      2004        administration    2005  BCBSA
                                                                                  recommendation  recommendation
----------------------------------------------------------------------------------------------------------------
Medicare Operations...........................................            1,701            1,704         1,814.7
Medicare Integrity Program....................................              720              720           740.0
                                                               -------------------------------------------------
      Total Contractor Budget.................................            2,421            2,514         2,555.0
----------------------------------------------------------------------------------------------------------------

                                 ______
                                 
        Prepared Statement of the American Diabetes Association
    Thank you for the opportunity to submit testimony on the important 
issue of funding the diabetes program at the Centers for Disease 
Control and Prevention (CDC) and diabetes research at the National 
Institutes of Health (NIH). Our government needs to significantly 
increase diabetes funding at these agencies not only for the 18 million 
Americans who currently have diabetes, but also for the 40 million who 
are at high risk for developing diabetes in the immediate future.
    The Association is aware that the Subcommittee is in a particularly 
difficult economic position this year. For that reason, the Association 
is asking the Subcommittee to adopt one request that is feasible even 
under the proposed budget numbers: the American Diabetes Association 
strongly urges the Subcommittee to add an additional $10 million to the 
budget of the Division of Diabetes Translation at CDC.
    Diabetes is a serious disease, and is a contributing and underlying 
cause of many of the diseases on which the federal government spends 
the most health care dollars. Diabetes is a significant cause of heart 
disease (which costs our nation $183.1 billion each year), a 
significant cause of stroke ($43.3 billion each year), the leading 
cause of kidney disease ($40.3 billion). Diabetes is also the leading 
cause of adult-onset blindness and lower limb amputations. 
Additionally, aside from all of these related conditions, diabetes 
alone costs our nation $132 billion a year.
    Approximately 42,000 people suffering from diabetes live in each 
congressional district. The following illustrates how diabetes affects 
your district in realistic terms:
  --177 of your constituents will develop heart disease this year 
        because of diabetes.
  --154 of your constituents will develop end stage renal disease this 
        year because of diabetes.
  --129 of your constituents will lose a foot or leg this year because 
        of diabetes.
  --55 of your constituents will go blind this year because of 
        diabetes.
    Given the systemic damage diabetes imposes throughout the body, it 
is no surprise that the life expectancy of a person with the disease 
averages 10-15 years less than that of the general population.
    Unfortunately, the spread of diabetes will only get worse in the 
coming years unless we see a significantly larger funding commitment by 
the federal government. Indeed, a CDC report issued in January of this 
year finds that the prevalence of diabetes nationwide increased by over 
60 percent between 1990 and 2001. If diabetes keeps increasing at this 
rate, its prevalence will double in just over 15 years.
    The Association hopes that an additional $10 million this year for 
the Division of Diabetes Translation--a request strongly supported by 
the Congressional Diabetes Caucus, comprised of 280 Members of 
Congress--would simply be the first step in a 5-year effort to double 
to budget of the Division. Although the medical research community has 
made tremendous strides in the area of diabetes over the past two 
decades, the benefits of this research have not been fully realized by 
a majority of the Americans affected by this disease. The federal 
government must commit more resources to ensure that important research 
findings are effectively and adequately translated into public health 
interventions. To this end, we believe strongly in the work funded by 
the Division of Diabetes Translation.
    However, the Division's fiscal year 2004 budget of $67 million--and 
the President's $67 million request for fiscal year 2005--represents a 
miniscule commitment to diabetes prevention and control. Indeed, for 
every $1 that diabetes costs this country, the federal government 
currently invests less than $.01 to help Americans prevent and manage 
this deadly disease.
    In 2003 the Division provided support for more than 50 state- and 
territorial-based diabetes control programs to reduce the complications 
associated with diabetes. However, funding constraints required the 
Division to provide severely limited support to 26 states, 8 
territories, and D.C. for capacity-building diabetes programs. Slightly 
more substantive support was provided to the other 24 states for basic 
implementation programs. Although every state and territory has at 
least a capacity-building program, unfortunately these programs do not 
even come close to addressing the needs statewide. Instead, they simply 
serve as a rudimentary framework upon which a more comprehensive 
program can be built.
    CDC also conducts other activities to help people currently living 
with diabetes. For example, CDC works with NIH to jointly sponsor the 
National Diabetes Education Program (NDEP), which seeks to improve the 
treatment and outcomes of people with diabetes, promote early 
detection, and prevent the onset of diabetes. In addition, CDC funds 
work at the National Diabetes Laboratory to support scientific studies 
that will improve the lives of people with diabetes.
    Even while the Division of Diabetes Translation conducts a number 
of activities to help people with diabetes, it suffers a similar 
problem as its NIH counterpart, NIDDK. Compared to other diseases, 
diabetes remains significantly underfunded at CDC. If adequately 
funded, the Division would be able to fund a basic implementation 
program in every state as well as conduct and fund additional projects 
to assist people with diabetes. Without fully-funded diabetes programs 
and projects in all parts of the country, it will be exceedingly 
difficult--if not impossible--to control the escalating costs 
associated with diabetic complications and to stem the epidemic rise in 
diabetes rates.
    The American Diabetes Association supports the President's support 
for the Steps to a Healthier U.S. Initiative, and is encouraged that 
this program focuses--among other things--on obesity and diabetes. We 
strongly believe, though, that funds made available for this new 
Initiative should not take away from funds that would otherwise be made 
available to the Division of Diabetes Translation. State Diabetes 
Prevention and Control Programs--when provided with enough funding--are 
proven commodities that have been extremely successful in helping 
Americans prevent and manage their diabetes. Americans in every state 
should have access to such quality programs.
    Chronic diseases, including diabetes, account for nearly 70 percent 
of all health care costs as well as 70 percent of all deaths annually. 
However, less than $1.25 per person is directed toward public health 
interventions focused on preventing the debilitating effects associated 
with chronic diseases, demonstrating that federal investment in chronic 
disease prevention remains grossly inadequate. We cannot ignore those 
Americans who are currently living with diabetes and other diseases.
                        recent funding increases
    The American Diabetes Association appreciates that Congress has 
begun to give greater attention to diabetes research at NIH in recent 
years and that the current Administration has proposed an overall 
increase in the NIH budget. However, during much of the past decade, 
diabetes funding has stagnated even while the burden has grown 
significantly. Indeed, from 1987-2001, appropriated diabetes funding as 
a share of the overall NIH budget has dropped by more than 20 percent 
(from 3.9 percent to 2.9 percent) while the death rate due to diabetes 
has increased by more than 40 percent. Thankfully, the past 4 years 
have brought larger increases in diabetes funding than we had seen over 
the majority of the decade. Only over these years did the growth in 
diabetes research funding finally keep pace with the growth of the 
overall NIH budget. At a time when diabetes is exploding across our 
nation, it remains essential that we increase the research funding 
levels for diabetes.
    Mr. Chairman, we appreciate the increases of the last few years. 
Congress should be proud of the bi-partisan support for the effort to 
double the NIH budget. But this should not equate to an automatic 
institute-by-institute doubling.
    Some institute budgets are larger not only due to scientific 
opportunities, but due to special consideration in years past. 
Unfortunately, across-the-board percentage increases make it difficult, 
if not impossible, to address funding shortfalls for diseases that now 
have promising scientific opportunities. Diseases like diabetes that 
have not received funding commensurate with their national burden, as 
well as with existing scientific opportunities, continue to fall behind 
as a result of this funding strategy.
    Across-the-board increases for all institutes simply do not allow 
the Congress, or the nation, to deal with the serious problem of 
diabetes anytime soon. While on the surface across-the-board increases 
appear equitable to everyone, it actually perpetuates inequity in 
absolute dollar terms. In reality, a 15 percent increase means much 
more for diseases and institutes with large budgets, and far less for 
diseases and institutes with small budgets.
    Continuing with an across-the-board approach for Institute funding 
means that these discrepancies in funding will continue to grow. This 
is not inherently bad so long as the difference accurately reflects the 
scientific opportunities and health impact of disease on the nation. 
But in the case of diabetes at least, it does not.
    The net effect of an across-the-board approach is that past funding 
legacies still affect the funding priorities at NIH to this day. By not 
constantly making an honest assessment of the health challenges faced 
by our nation and by not looking harder at the scientific opportunities 
facing the research community, NIH has perpetuated an inequality in 
funding based on decisions made many years before.
                               conclusion
    I firmly believe that we could rapidly move toward curing, 
preventing, and managing this disease by increasing funding for 
diabetes programs and research both at CDC and NIH. Your leadership can 
help accomplish this goal.
    The American Diabetes Association strongly urges the committee and 
Congress increase the budget of the Division of Diabetes Translation by 
$10 million in fiscal year 2005 as the first step in a 5-year doubling 
plan. A doubling of the Division's budget would allow the Division to 
finally implement a Basic Implementation Diabetes Prevention and 
Control Program in every state and territory, thus moving the 
government in the direction of truly helping all Americans with 
diabetes. Additionally, we urge the Subcommittee to increase funding at 
NIH for diabetes research as much as possible in these strict economic 
times.
    Speaking on behalf of the 18 million Americans with diabetes--a 
disease that crosses gender, race, ethnicity and political party; a 
disease that is among the most costly, debilitating, deadly and 
prevalent in our nation; and a disease that is exploding throughout our 
nation--I appreciate the opportunity to submit this testimony. The 
American Diabetes Association is prepared to answer any questions you 
might have on these important issues.
                                 ______
                                 
      Prepared Statement of the American Society for Microbiology
    The American Society for Microbiology (ASM), the largest single 
life science society with 43,000 members, is pleased to submit 
testimony on the fiscal year 2005 budget for the Centers for Disease 
Control and Prevention (CDC). The CDC is the nation's lead agency for 
protecting the health and safety of the public, both nationally and 
globally. Threats to public health and security have steadily increased 
in number and complexity over time, despite medical successes and 
technical innovation. The work of the CDC is of unprecedented 
importance in safeguarding public health.
    The ASM is concerned that funding for CDC is not keeping pace with 
its growing responsibilities to address new health threats. The $6.9 
billion fiscal year 2005 request for the CDC is a 2.8 percent reduction 
below last year's $7.1 billion. The ASM endorses the CDC Coalition's 
recommendation of $8.1 billion in fiscal year 2005 for CDC, followed by 
annual increases to achieve $15 billion for the agency by fiscal year 
2008. Increased support is crucial to the CDC's primary goals for 
protecting public health: surveillance and response, basic and applied 
research, training and education, and prevention and control.
    The CDC's ability to mobilize rapidly to prevent or contain disease 
is an urgently needed line of defense against the economic and social 
havoc that can result from public health threats. In 2003, the CDC was 
essential in identifying the cause of the Severe Acute Respiratory 
Syndrome (SARS) epidemic in Asia and the first case of human monkeypox 
in the United States. Agency personnel also trained approximately 8,800 
U.S. clinical laboratory staff in terrorism preparedness and response, 
while others investigated numerous outbreaks of infectious and food-
borne diseases, as well as chronic disease diagnoses among diverse 
populations. Proposed cuts to a number of CDC programs could jeopardize 
the agency's activities to address health threats.
    The ASM is concerned that the proposed fiscal year 2005 budget 
represents no or only slight increases in CDC programs such as emerging 
and re-emerging infectious diseases, antimicrobial resistance and 
domestic HIV/AIDS programs. The ASM also recommends that new 
bioterrorism preparedness initiatives be funded without redirecting 
resources from needed on-going state and local programs, as proposed in 
the fiscal year 2005 budget. By adequately enlarging the CDC 
appropriation, Congress would strengthen significantly our defenses 
against naturally and intentionally caused disease in the United States 
and elsewhere.
                 infectious diseases and public health
    The National Center for Infectious Diseases (NCID) supports 
programs to prevent and control endemic, new and reemerging infectious 
diseases in the United States and abroad. The proposed fiscal year 2005 
budget for the CDC includes $400.8 million for infectious diseases, an 
increase of $31.3 million over fiscal year 2004 funding. Most of the 
increase benefits two CDC programs: $27.5 million to expand the CDC's 
Global Disease Detection Initiative to $51 million, and $2 million to 
increase West Nile virus (WNV) research as well as state and local 
health department WNV surveillance and response capabilities. Because 
of increased world trade and travel, nations can no longer ignore any 
type of infectious disease and global strategies have become 
fundamental to CDC's public health activities. The ASM supports the 
budgetary increases proposed for these two programs, but is concerned 
that critical components of the CDC infectious diseases mission also 
need additional resources in the fiscal year 2005 budget.
    In 2003 the Institute of Medicine (IOM) released a strongly worded, 
cautionary report on Microbial Threats to Health. The IOM report points 
out that infectious disease public health needs have been and will 
continue to increase. Between 1973 and 2003, more than three dozen 
newly emerging diseases were identified. Most recently, hantavirus, 
West Nile virus, SARS, bovine spongiform encephalopathy (BSE), and 
monkeypox became known enemies to public health in the United States. 
In the 1990s, the CDC revitalized its infectious disease programs to 
better reflect the emergence of new infectious diseases. By investing 
in partnerships with local and state health departments, academic 
research and teaching institutions, private industries, other federal 
agencies, world health organizations, and health agencies and 
researchers in other nations, the CDC expanded its ability to detect 
and contain infectious disease, as it intensified its own research and 
training programs. The vital need for CDC programs was emphasized 
dramatically last year with the SARS epidemic and hundreds of human WNV 
infections. The need remains as urgent today with concern about BSE and 
avian flu now in the United States.
    Experts predict a major pandemic during this century and the most 
likely source remains influenza. A hallmark of pandemics and many small 
scale emerging infectious diseases is that they are zoonoses. Zoonotic 
diseases, infections which are naturally transmitted between animals 
and man, represent one of the leading causes of illness and death from 
infectious diseases and nearly all emergent episodes of the past 10 
years have involved zoonotic infectious agents. In the United States 
alone, an influenza pandemic could cause an estimated 89,000 to 207,000 
deaths and cost the nation from $71-167 billion in health care costs 
and lost productivity. Additional budgetary resources are needed to 
address issues such as zoonoses and influenza, which were highlighted 
in the IOM report. CDC infectious diseases should be increased by an 
additional $50 million.We recognize that significant investment will be 
required to enhance efforts to address the threat of pandemic influenza 
in order to develop a newer generation influenza vaccine that can be 
quickly produced and deployed, to strengthen the public health 
infrastructure at the state and local levels, and to ensure needed 
vaccines and antiviral medicines are readily available. We recommend 
that the Department of Health and Human Services (DHHS) assess the 
needs for resources to address pandemic flu within the NIH, CDC and FDA 
and coordinate the planning activities.
    The goal of the CDC's new Global Disease Detection Initiative 
within its epidemic services and infectious disease control programs is 
to work faster and better in recognizing and controlling any infectious 
disease threatening public health. The CDC operates in a global arena, 
establishing myriad programs and collaborations beyond the nation's 
borders and sending quick-response assessment teams around the world. 
It recently funded five university schools of public health and three 
non-government organizations to assist malaria-endemic African 
countries, where the disease kills and disables millions. CDC personnel 
provide consistent epidemiological expertise and lab support to nations 
under siege, most recently the Congo (Marburg virus disease), Uganda 
and Gabon (Ebola hemorrhagic fever), Saudi Arabia and Yemen (Rift 
Valley fever), and more. CDC programs will be expanded in five 
countries including Brazil and China and new sites will be created in 
six others, most of them in Africa. The CDC also will continue to be a 
major implementing agency for the U.S. Department of State's Mother to 
Child HIV Prevention Initiative inaugurated last year. The new Global 
Disease Detection initiative includes improvement of the existing 
international surveillance network for influenza, to bolster the early 
warning system for identifying more uncommon viruses.
    The multi-faceted network of disease surveillance in the United 
States expands and changes annually. The CDC last year enhanced its 
surveillance of prion diseases and responded to the first confirmed 
U.S. case of BSE in cattle. Food-borne illness surveillance has grown 
into one of the most extensively used networks: 76 million Americans 
suffer from contaminated foods each year at an estimated cost of over 
$1 billion. The CDC's PulseNet is credited with revolutionizing food-
borne surveillance in this country and overseas; recently it was 
expanded to incorporate a total of 21 participating countries. In 2003, 
it was critical in identifying U.S. outbreaks of salmonellosis from 
tomatoes and eggs, E. coli O157 infection from beef, and listeriosis 
from raw milk cheese. The CDC coordinates U.S. influenza surveillance 
and recently expanded its sentinel surveillance sites through one of 
many data-collecting networks. The 891 influenza sites will not only 
alert officials to impending flu epidemics, but also to other 
respiratory diseases.
    Effective as surveillance networks are in preventing further spread 
of disease, protecting the public must stress prevention through 
effective education and science-based efforts. For instance, the CDC 
supplies funding to most states to promote appropriate use of 
antibiotics and thus limit the rising medical costs associated with 
antibiotic resistance. The agency has implemented a National Hepatitis 
C Prevention Strategy by establishing coordinators in all 50 state 
health departments. It developed guidelines for the prevention of 
perinatal group B streptococcal disease that have resulted in a 70 
percent reduction since 1993. An initiative begun last year expects to 
increase HIV testing in this country and enhance prevention, in 
recognition that the rate of new infections (about 40,000 each year) 
has remained stable despite education efforts over the past two 
decades. The ``Advancing HIV Prevention'' approach shifts strategies to 
reduce even further the barriers to early HIV diagnosis and quality 
medical care.
    In response to the 2001 Public Health Action Plan to Combat 
Antimicrobial Resistance (AR), the CDC announced a new extramural 
applied research grant program in 2003, to fund research in the areas 
of mechanisms of dissemination of AR genes, resistance in specific 
human pathogens of public health concern and the characterization of 
strains of community-associated methicillin-resistant Staphylococcus 
aureus (MRSA). The goal of the applied research program is to prevent 
and control the emergence and spread of antimicrobial resistance in the 
United States. Approximately $25 million is being requested for 
antimicrobial resistance research, surveillance, prevention and control 
activities. Considering the magnitude of the problem of antimicrobial 
resistance, additional new funding should be provided in the CDC budget 
to address the alarming issue of antimicrobial resistance.
    Each year about 48,000 Americans die from vaccine-preventable 
diseases; worldwide, these diseases cause an estimated 2.4 million 
childhood deaths. The fiscal year 2005 CDC budget request includes $1.9 
billion for a number of significant vaccination programs. Some, like a 
stockpile of all routinely recommended childhood vaccines, already are 
in progress. Others are new, like an inventory of childhood influenza 
vaccine. The immunization budget will continue to provide global 
immunization activities ($151 million), including the goal of global 
polio eradication by 2005.
                    national security and biodefense
    Intentional release of biological weapons troubled the CDC well 
before events of 2001, but the enormity of those attacks brought home 
the grave potential of bioterrorism. The attacks also forced the CDC to 
shift much of its mission focus to bioterrorism preparedness, in 
collaborations with other federal, state, and local health 
organizations. The agency quickly formed emergency response teams, 
established extensive state-of-the-art communication systems, and 
concentrated on basic and applied research related to possible 
bioweapons. The fiscal year 2005 request of $1.1 billion would continue 
CDC efforts related to terrorism preparedness and emergency response at 
a funding level identical to that implemented so effectively in fiscal 
year 2004. The ASM recognizes the dire consequences of bioterrorism and 
supports extensive funding of CDC preparedness programs. However, the 
programmatic impact of removing $105 million from state/local programs 
and $25 million from internal CDC activities to subsidize CDC's 
component in a new cross-agency Biosurveillance initiative deserves 
evaluation.
    The new Biosurveillance Initiative was designed by a coalition of 
federal agencies after the Homeland Security Council identified early 
bioattack warning and surveillance as top priority areas in need of 
improvement. The CDC's contribution, funded at $130 million in the 
proposed fiscal year 2005 budget, includes three new program 
activities, the BioSense surveillance system ($100 million), real-time 
laboratory reporting ($20 million), and expanded border health 
inspection and quarantine capability ($10 million). The BioSense 
program represents a new and largely untested generation of infectious 
disease surveillance that does not rely upon mandatory or voluntary 
case reporting from healthcare providers. Instead, sets of anonymous 
health data will be automatically and electronically gathered from pre-
determined sources like over-the-counter retail sales of home health 
remedies and visits to emergency rooms. This system is intended to 
provide public health officials with ``a near real-time sense'' of the 
community's health status and to reduce the time needed to detect 
threats from days or weeks to hours.
    The ASM strongly supports two programs of the new initiative which 
build on the importance of trained personnel who respond locally but 
work together within the national goal of preventing bioterrorist 
attacks. One program will expand the CDC's existing Laboratory Response 
Network (LRN) by adding animal diagnostics and food safety capabilities 
to public health, clinical, and private commercial laboratories. The 
other program recognizes that every day more than 2 million people 
travel to or through this country by air, sea or land, and that each 
year, more than 350,000 new immigrants arrive. It adds new, 
strategically placed quarantine stations and creates multidisciplinary 
teams able to respond to infectious disease emergencies at U.S. 
seaports, border crossings, and airports.
    By the end of fiscal year 2004, over $3 billion will have been 
allocated by the CDC to upgrade state and local health departments 
since the 2001 terrorist attacks. Supporting this nationwide community 
of anti-terrorism capability extends the CDC's own efforts and provides 
a greater return on funding investments. CDC support also comes from 
the many wide-ranging communication networks used by the CDC to 
disseminate new scientific information, health risk alerts, and 
population- or disease-specific updates. An example is the Epidemic 
Information Exchange, Epi-X, which provides swift exchange of 
information among more than 2,000 key public health officials 
nationwide. The Public Health Information Network sends health alerts 
and advisory messages to one million recipients, including 90 percent 
of all county public health departments. The Laboratory Response 
Network, to be expanded under the new Biosurveillance Initiative, 
already includes 113 members in the United States and elsewhere; an 
increasing number of these labs could confirm the presence of anthrax, 
tularemia, and smallpox, and more than half are qualified to handle 
some of the most dangerous pathogens.
    The complex CDC infrastructure used to prevent bioterrorism also 
incorporates the training of specialized personnel, the stockpiling of 
crucial supplies needed in mass emergencies, and the careful monitoring 
of pathogens and other toxic agents used in research. Management of the 
Strategic National Stockpile has been returned to the HHS from the 
Department of Homeland Security, as a source of smallpox vaccine and 
other medical supplies shippable to any scene of mass trauma in the 
United States. The Epidemic Intelligence Service grew from 148 officers 
in 2001, to 167 in 2003; 49 of these first-line responders are assigned 
to local or state health departments. With the U.S. Department of 
Agriculture, this year the CDC will inspect 300 laboratories using 
potential bioagents in research, through the Select Agent Program that 
controls the possession and transfer of infectious agents. The SAP 
program should have adequate resources.
                        buildings and facilities
    A total of $81.5 million is proposed in the fiscal year 2005 budget 
for CDC buildings and facilities. CDC is undertaking and has made 
substantial progress in a 10-year effort to rebuild its physical 
infrastructure and replace and upgrade decrepit out-dated buildings and 
facilities. State of the art, safe and secure laboratories and 
facilities, as well as modern equipment, are essential to an effective 
CDC response to the broad range of public health threats facing the 
country and the world. The ASM recommends that Congress appropriate 
$250 million for CDC's critical infrastructure needs.
                                 ______
                                 
        Prepared Statement of the InterTribal Bison Cooperative
                      introduction and background
    My name is Ervin Carlson, a Tribal Council member of the Blackfeet 
Tribe of Montana and President of the InterTribal Bison Cooperative. 
Please accept my sincere appreciation for this opportunity to submit 
testimony to the honorable members of the Appropriations Subcommittee 
on Labor, Health and Human Services and Education. The InterTribal 
Bison Cooperative (ITBC) is a Native American non-profit organization, 
headquartered in Rapid City, South Dakota, comprised of fifty-three 
(53) federally recognized Indian Tribes located within 18 States across 
the United States.
    Buffalo thrived in abundance on the plains of the United States for 
many centuries before they were hunted to near extinction in the 1800s. 
During this period of history, buffalo were critical to survival of the 
American Indian. Buffalo provided food, shelter, clothing and essential 
tools for Indian people and insured continuance of their subsistence 
way of life. Naturally, Indian people developed a strong spiritual and 
cultural respect for buffalo that has not diminished with the passage 
of time.
    Numerous tribes that were committed to preserving the sacred 
relationship between Indian people and buffalo established the ITBC as 
an effort to restore buffalo to Indian lands. ITBC focused upon raising 
buffalo on Indian Reservation lands that did not sustain other economic 
or agricultural projects. Significant portions of Indian Reservations 
consist of poor quality lands for farming or raising livestock. 
However, these wholly unproductive Reservation lands were and still are 
suitable for buffalo. ITBC began actively restoring buffalo to Indian 
lands after receiving funding in 1992 as an initiative of the Bush 
Administration.
    Upon the successful restoration of buffalo to Indian lands, 
opportunities arose for Tribes to utilize buffalo for tribal economic 
development efforts. ITBC is now focused on efforts to assure that 
tribal buffalo projects are economically sustainable. Federal 
appropriations have allowed ITBC to successfully restore buffalo the 
tribal lands, thereby preserving the sacred relationship between Indian 
people and buffalo. The respect that Indian tribes have maintained for 
buffalo has fostered a serious commitment by ITBC member Tribes for 
successful buffalo herd development. The successful promotion of 
buffalo as a healthy food source will allow Tribes to utilize a 
culturally relevant resource as a means to achieve self-sufficiency.
        funding request for preventative health care initiative
    The InterTribal Bison Cooperative respectfully requests an 
appropriation for fiscal year 2005 in the amount of $3,000,000 in the 
form of an earmark to the Department of Health and Human Service 
Department's budget. ITBC intends to utilize the funds to conduct a 
national demonstration project focused on the delivery of bison meat to 
Native Americans suffering from diet related diseases.
    The Native American population currently suffers from the highest 
rates of Type 2 diabetes. The Indian population further suffers from 
high rates of cardio vascular disease and various other diet related 
diseases. Studies indicate that Type 2 diabetes commonly emerges when a 
population undergoes radical diet changes. Native Americans have been 
forced to abandon traditional diets rich in wild game, buffalo and 
plants and now have diets similar in composition to average American 
diets. More studies are needed on the traditional diets of Native 
Americans versus their modern day diets in relation to diabetes rates. 
However, based upon the current data available, it is safe to assume 
that disease rates of Native Americans are directly impacted by a 
genetic inability to effectively metabolize modern foods. More 
specifically, it is well accepted that the changing diet of Indians is 
a major factor in the diabetes epidemic in Indian Country.
    Approximately 65-70 percent of Indians living on Indian 
Reservations receive foods provided by the USDA Food Distribution 
Program on Indian Reservation (FDPIR) or from the USDA Food Stamp 
Program. The FDPIR food package is composed of approximately 58 percent 
carbohydrates, 14 percent proteins and 28 percent fats. Studies have 
shown that the FDPIR food package has not been compatible with the 
genetic compositions of Native Americans and has been a major factor in 
the high incidence of diet-related disease among Native Americans. 
Indians utilizing Food Stamps generally select a grain based diet and 
poorer quality protein sources such as high fat meats based upon 
economic reasons and the unavailability of higher quality protein food 
sources.
    Buffalo meat is low in fat and cholesterol and is compatible to the 
genetics of Indian people. ITBC intends to develop a health care 
initiative that would educate Indian Reservation families of the 
benefits of incorporating buffalo meat into their diets. In conjunction 
with educating Reservation families on the benefits of buffalo meat, 
ITBC intends to develop methods to make buffalo meat accessible for 
Indian families and to promote incorporation of buffalo into their 
diets. ITBC intends to coordinate with Reservation health care 
providers in nutritional studies of Reservation populations that 
incorporate buffalo meat into diet packages.
    ITBC believes that incorporating buffalo meat will positively 
impact the diets of Indian people living on Reservations. A healthy 
diet for Indian people that results in a lower incidence of diabetes 
and other diet related illnesses will reduce Indian Reservation health 
care costs and result in a savings for taxpayers.
          funding request for itbc training and labor program
    The InterTribal Bison Cooperative respectfully requests an 
appropriation for fiscal year 2005 in the amount of $500,000. This 
amount is $400,000 above the fiscal year 2004 appropriation for ITBC 
and is critical to maintain last years funding level and to develop 
ITBC's training and labor program.
    In fiscal year 2004, the ITBC and its member Tribes were funded at 
$100,000, a decrease of $200,000 from the previous year. ITBC is now 
requesting $500,000 for fiscal year 2005 for job training as part of 
ITBC's labor initiative. To insure the success of ITBC's buffalo 
restoration efforts to Indian lands, training for the various jobs 
related to the buffalo projects is essential. Most member Tribes of 
ITBC have reservation unemployment rates of 72 percent. Jobs 
opportunities on most Indian Reservations are limited, low-paying, and 
often seasonal and temporary. The jobs created by buffalo restoration 
to Indian lands will positively impact Tribal unemployment rates and 
the overall Reservation poverty levels. Raising buffalo as an economic 
development effort requires skilled labor in permanent employment. ITBC 
has developed a job training program incorporating on-the-job training 
and work experience for youth that specifically addresses the unique 
needs of managing and maintaining buffalo. ITBC's training program 
further focuses on strengthening the economic development opportunities 
of buffalo restoration with training specific to meat processing, 
veterinary science, wildlife and biological services, infrastructure 
development, business and management training, and the overall 
development of a skilled workforce.
    Sufficient funding for job training is critical to the success of 
the buffalo restoration projects. The increase in funding will ensure 
that ITBC can provide job training, job growth training to ITBC member 
tribes. Without funding at the requested level, the buffalo restoration 
projects have less assurance of success.
                       itbc goals and initiatives
    In addition to developing a preventative health care initiative, 
ITBC intends to continue with buffalo restoration efforts and the 
Tribal buffalo marketing initiative.
    In 1991, seven Indian Tribes had small buffalo herds, with a 
combined total of 1,500 animals. The herds were not utilized for 
economic development but were often maintained as wildlife only. During 
ITBC's relatively short 10-year tenure, it has been highly successful 
at developing existing buffalo herds and restoring buffalo to Indian 
lands that had no buffalo prior to 1991. Today, through the efforts of 
ITBC, over 35 Indian Tribes are engaged in raising over 15,000 buffalo. 
All buffalo operations are owned and managed by Tribes and many 
programs are close to achieving self-sufficiency and profit generation. 
ITBC's technical assistance is critical to ensure that the current 
Tribal buffalo projects gain self-sufficiency and become profit-
generating. Further, ITBC's assistance is critical to those Tribes 
seeking to start a buffalo restoration effort.
    Through the efforts of ITBC, a new industry has developed on Indian 
reservations utilizing a culturally relevant resource. Hundreds of new 
jobs directly and indirectly revolving around the buffalo industry have 
been created. Tribal economies have benefited from the thousands of 
dollars generated and circulated on Indian Reservations.
    ITBC has also been strategizing to overcome marketing obstacles for 
Tribally raised buffalo. ITBC is presently assisting the Assiniboine 
and Gros Ventre Tribes of the Fort Belknap Reservation, who recently 
purchased an USDA approved meat-processing plant, with a coordination 
scheme to accommodate the processing of range-fed Tribally raised 
buffalo.
                               conclusion
    ITBC has proven highly successful since its establishment to 
restore buffalo to Indian Reservation lands to revive and protect the 
sacred relationship between buffalo and Indian Tribes. Further, ITBC 
has successfully promoted the utilization of a culturally significant 
resource for viable economic development.
    ITBC has assisted Tribes with the creation of new jobs, on-the-job 
training and job growth in the buffalo industry resulting in the 
generation of new money for tribal economies. ITBC is also actively 
developing strategies for marketing Tribally owned buffalo. Finally, 
and most critically for Tribal populations, ITBC is developing a 
preventive health care initiative to utilize buffalo meat as a healthy 
addition to Tribal family diets to reduce the incidence of diet-related 
illnesses.
    ITBC strongly urges you to support its request for a $3,000,000 
earmark to the Department of Health and Human Service Department's 
budget to develop the critically needed preventative health care 
initiative utilizing Tribally produced buffalo.
                                 ______
                                 
     Prepared Statement of the Medicare Payment Advisory Commission
    The Medicare Payment Advisory Commission (MedPAC) was created by 
the Congress to provide it with independent policy advice and technical 
assistance concerning the Medicare program and other aspects of the 
health care system. To carry out its responsibilities MedPAC requests a 
budget appropriation of $9.905 million for fiscal year 2005. This 
request for a $605,000 increase over the Commission's fiscal year 2004 
appropriation reflects the expanded responsibilities assigned to the 
Commission by the Medicare Prescription Drug, Improvement, and 
Modernization Act of 2003 (MMA) (Public Law 108-173), including 16 
additional reports and the requirement to advise the Congress on the 
new prescription drug benefit. The most significant increases in 
MedPAC's fiscal year 2005 budget will fund data analysis and research 
contracts to meet those requirements.
                               who we are
    MedPAC is a federal advisory commission 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 (BBA) (Public Law 105-
33). Broadly defined by statute, the Commission's responsibilities are 
to:
  --consider Medicare payment policies for private plans and 
        traditional fee-for-service Medicare,
  --determine the effects of Medicare payment policies on the delivery 
        of health care services, and
  --analyze the implications for Medicare of changes in the broader 
        health care system.
    MedPAC is a small efficient operation. 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. The 
Commission meets publicly throughout the year as it develops its 
recommendations. An executive director, analytic and administrative 
personnel staff the Commission. Staff are highly trained health policy 
analysts and economists. The Commission has less than 40 staff and 
outsources 40 percent of its budget for tasks such as data analysis, 
programming, printing, editorial work, and selected research projects 
to maintain efficiencies. We have also achieved efficiencies by 
migrating data analysis to personal computers and moving from printed 
to electronic reports.
    The MMA requires that the expertise of the Commission's membership 
be expanded to include pharmaceuticals, and we expect that to occur 
when new commissioners are appointed in 2004. Over the coming fiscal 
year, MedPAC will make a significant investment in resources to be able 
to provide advice on the implementation of the prescription drug 
benefit and other program changes introduced by the MMA. Judging from 
our experience during consideration of the legislation, we also 
anticipate a significant use of resources to respond to Congressional 
inquiries about the new benefit and program changes.
                               what we do
    Each year, our annual appropriations provide the resources 
necessary to complete the Commission's required activities, including:
  --March report to the Congress. Delivered on March 1 of each year, 
        this report includes recommendations on the appropriate levels 
        of payment for Medicare providers and policies to address the 
        distribution of payments within each payment sector.
  --June report to the Congress. Delivered on June 15 of each year, 
        these reports have addressed issues such as Medicare in rural 
        America, innovations and variations in the Medicare program, 
        and a variety of other topics.
  --Reports required by other legislation. The new Medicare legislation 
        requires MedPAC to issues 16 reports on a variety of topics--12 
        of which are due during fiscal year 2005.
  --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 & Medicaid Services (CMS).
    To support the Congress, MedPAC also anticipates Congressional 
requests for the following projects not specifically mandated by law:
  --Policy briefs on topics of interest, including issues such as a 
        primer on prescription drug formularies, descriptive 
        information on beneficiaries eligible for both Medicare and 
        Medicaid, information about employer-sponsored insurance 
        benefits, and other issues that generate interest throughout 
        the year.
  --A Medicare data chartbook in June 2004, similar to the one produced 
        in 2003 in response to requests by health committee staff.
  --Requests for data and analysis from the health committee staff 
        (more than 100 last year).
         medpac reports provide information and recommendations
    MedPAC's fiscal year 2003 reports informed the Congress on wide 
range of Medicare issues. During the past year, the Commission 
completed our annually mandated March and June reports, eight reports 
mandated under the BBRA and BIPA, and other reports and studies as 
requested by the Congress. In addition, six reports were developed for 
MedPAC by external contractors and issued during 2003, and the 
Commission has submitted written comments to the Secretary of the 
Department of Health and Human Services on nine proposed rules.
    In a program that spends $272 billion, MedPAC's payment update 
recommendations have important implications for the beneficiaries, the 
medical delivery system, and the federal budget. The March 2004 report 
focuses on payment policies and presents recommendations to Congress on 
updating payments to hospitals, physicians, and other providers, as 
well as refinements to their payment systems. It also includes 
refinements to the payments for private plans as well as 
recommendations to add quality incentives to the payment systems for 
end-stage renal disease patients and private plan enrollees.
    The June 2004 report will address a range of issues of importance 
to the Congress as it considers both future legislation and CMS 
implementation of the MMA. The report will address a broad range of 
policy issues, including disease management, the dual eligible 
population, information technology, and an overview of issues 
surrounding implementation of the new drug benefit. It will also 
include analyses of long-term care hospitals, innovations in 
purchasing, and hospices.
    We anticipate production and submission of a Medicare data 
chartbook in June 2004, similar to the one produced in 2003 and as 
requested by health committee staff--although publication will depend 
upon our assessment of those resources we must commit to studies 
mandated by the MMA.
    During the rest of fiscal year 2004 and into 2005, MedPAC will also 
be working on the 16 studies mandated by the MMA. These reports cover 
issues such as the effect of new provisions to aid rural hospitals, 
analysis of the volume of physician services, changes in use of Part B 
drugs by oncology patients, and beneficiary cost sharing in plans. In 
addition, the Institute of Medicine is required to consult with the 
Commission on a study about quality incentives in the payment system, 
and GAO and CMS will collaborate with us on an analysis of specialty 
hospitals.
    MedPAC will also comment on CMS administrative actions and review 
new payment systems for providers such as long-term care hospitals and 
inpatient rehabilitation facilities. The MMA assigned the Secretary 
more than 30 reports on which MedPAC will comment. Given the volume of 
rules and reports the Secretary must promulgate in the coming year to 
implement the new drug benefit and other MMA provisions, we anticipate 
that reviewing those actions will require a substantial amount of 
resources.
   medpac provides testimony, briefings, and assistance to hill staff
    During calendar year 2003, the Commission testified before three 
Congressional committees. The Commission chair testified before the 
House Ways & Means, Subcommittee on Health, on the Commission's March 
Report to the Congress (March 6, 2003) and on Medicare cost-sharing and 
supplemental insurance (May 1, 2003). The Commission's executive 
director testified before the Senate Special Committee on Aging on 
disease management in traditional Medicare (November 4, 2003). In March 
2004, the Commission chair testified on improving quality through 
Medicare payment policy before the House Ways & Means, Subcommittee on 
Health.
    The Commission has provided additional support to the Congress. 
From February through April 2003, the Commission briefed the Senate 
Committee on Finance on selected payment systems. On separate 
occasions, the executive director also briefed the members of the House 
Energy and Commerce Committee and the House Rural Caucus. In addition, 
the executive director briefed staff of the rural health caucus on 
rural Medicare provider payments.
    MedPAC staff regularly brief the health committee staff on ongoing 
work by the Commission. This includes a series of conference calls and 
face-to-face meetings prior to each public meeting to discuss research, 
gather feedback, and provide information about Commission deliberations 
and upcoming recommendations. Commission staff has also responded, both 
orally and in writing, to numerous requests from Congressional staff on 
a wide variety of topics. Not including minor requests, Commission 
staff has filled over 100 direct requests for information from 
Congressional staff, involving providing data and other substantive 
analyses or explanations. Staff have also had more than 20 meetings 
with or briefings for Congressional staff on related topics.
    We anticipate our level of support to the Congress including 
testimony, briefings, and technical assistance will increase in the 
next year as issues concerning the implementation and implications of 
new provisions in the MMA become more apparent.
                                outreach
    During 2003, as in previous years, MedPAC has exchanged information 
and advice with other government entities involved in crafting and 
assessing Medicare policy. We have met and conferred with staff from 
the General Accounting Office, the Centers for Medicare & Medicaid 
Services, the Congressional Budget Office, the Congressional Research 
Service, the Agency for Healthcare Research and Quality, and the 
Assistant Secretary for Planning and Evaluation. Exchanges with these 
government entities will continue so that we coordinate our work and 
minimize redundancy.
    As in past years, MedPAC has continued to gather input to its 
policy deliberations through meetings with outside groups. Members of 
the Commission and staff will continue to meet with outside interest 
groups in order to gather information for MedPAC's findings and 
recommendations. In addition, in order to increase our understanding of 
the health care market and the impact of Medicare payment policy on 
providers, staff have made site visits to gather information. Such 
efforts will continue this year.
    During 2003, Commission staff extended its public outreach through 
speaking at a number of conferences. Another venue for public outreach 
has been staff publication of original articles based on Commission 
research. Members of the staff will continue to reach out to external 
groups through attendance at and presentations to academic and 
professional conferences, as well as publication of articles based on 
work at the Commission. Such efforts increase staff knowledge of the 
broader Medicare policy context and expand public understanding of the 
work of the Commission.
                medpac recommendations have been adopted
    The Congress and CMS have adopted MedPAC's recommendations on a 
range of issues. For example, the MMA reflected several of the 
Commission's recent recommendations on dialysis payments, the update 
for home health services, the home health rural add-on, updates to 
payments for services provided at ambulatory surgical centers, 
increases for physician services, and inpatient hospital payments.
             our appropriation request for fiscal year 2005
    For fiscal year 2005, MedPAC requests $9,905,000, which is $605,000 
more than the amount requested for fiscal year 2004. Medicare, a more 
than $270 billion program, represents one of the Congress' highest 
priorities. The requested budget of just over $9.9 million to better 
understand the policy concerns for this vital program is both 
justifiable and reasonable. This amount is necessary not only to 
maintain but to increase the current level of analysis, hold Commission 
meetings, develop data, and meet our mandated responsibilities to the 
Congress.
    Our fiscal year 2005 request is driven by several factors. As 
required by our authorizing legislation, during fiscal year 2005 we 
will submit our March and June reports. In addition, we will complete a 
significant number of new tasks, including:
  --Complete 12 mandated reports included in the MMA. In addition, 
        MedPAC is required to consult with the IOM, GAO, and CMS on 
        other reports mandated in the legislation.
  --Respond to more than 30 payment-related reports submitted to the 
        Congress by the Secretary.
  --Increase the analytic scope of the commission to include 
        prescription drugs.
    The majority of the increase in MedPAC's budget is for research 
contracts, computer programming, and commercial contracts to accomplish 
these new tasks. External research contracts enhance our efficiency by 
providing access to areas of expertise and additional work force on an 
as-needed basis. Because of MedPAC's increasing workload, access to 
external research contractors is critical to providing timely advice to 
Congress on key Medicare policy issues.
    The increased funding will also enable us to respond to the growing 
volume of informal Congressional requests for information. In addition, 
it has become increasingly clear that the data available to assess the 
Medicare program is inadequate and that we must strive to expand data 
sources and analysis. Fulfilling Congressional requests and expanding 
data sources requires increased staff time and increased computer costs 
for data analysis.
    While we do have significant increases in the expenses discussed 
above, MedPAC has achieved certain economies. We have significantly 
decreased spending on mainframe computer costs by moving data to 
personal computers. In addition, continued migration away from printed 
to electronic reports and internet-based resources has saved a 
significant amount of money for printing and reproduction. We 
anticipate these expenses will decline even further in fiscal year 2005 
even though we will be delivering 12 additional reports to the Congress 
during the fiscal year.
    More reports, more requests for information, and more timely data 
lead to an increase in our budget request. Small size, efficient 
operations, and increased economies enable us to take on increased 
responsibilities within, what is by any measure, a small budget in 
relation to the increased leverage it gives the Congress on the 
Medicare program.
                                 ______
                                 
              Prepared Statement of Research to Prevention
    Since June 2003, the Centers for Disease Control and Prevention 
(CDC) has undertaken a strategic planning effort to prepare the agency 
to address the health challenges of the 21st century. The Futures 
Initiative has involved gathering information from thousands of 
partners, stakeholders and the public regarding CDC's organization, 
scope and reach. Key findings include a need to strengthen CDC's role 
in health promotion and prevention of disease, disability, and injury. 
To accomplish this, one overarching goal was identified--``All people 
will achieve their optimal lifespan with the best possible quality of 
health in every stage of life.''
    Research to Prevention, a national coalition committed to improving 
the nation's health through prevention, wholeheartedly concurs with 
this goal and urges Congress to provide sufficient resources to permit 
CDC to maximize its chronic disease prevention efforts throughout the 
country. The coalition's members include the nation's premier voluntary 
health organizations and health provider organizations, including: the 
American Association of Diabetes Educators, the American Cancer 
Society, the American Diabetes Association, the American Heart 
Association, the Arthritis Foundation, the Chronic Disease Directors, 
the Epilepsy Foundation, the Lance Armstrong Foundation, Partnership 
for Prevention, Prevent Blindness America and the National Health 
Council.
    Research to Prevention aims to make prevention and control of 
chronic diseases and disability a national policy and funding priority 
by educating policymakers and advocating for vital funding increases 
for comprehensive public health programs that address the nation's 
leading causes of death and disability. Research to Prevention is 
seeking a $340 million increase in funding in fiscal year 2004 for 
State-based chronic disease prevention and control programs at the 
Centers for Disease Control and Prevention (CDC). We also support an 
increase in funding for the Youth Media Campaign, Racial and Ethnic 
Approaches to Community Health (REACH), the Preventive Health and 
Health Services Block Grant, as well as Secretary Thompson's Steps to a 
Healthier U.S. initiative. The attached chart provides detail on the 
specific requested funding levels.
    Chronic diseases are responsible for more than 70 percent of all 
U.S. deaths and more than 75 percent of all health care expenditures in 
the United States. The number of deaths alone, however, fails to convey 
the full picture of the toll of chronic disease. More than 125 million 
Americans live with some form of chronic disease, and millions of new 
cases are diagnosed each year. These serious conditions are often 
treatable but not always curable. Thus, an even greater burden befalls 
Americans from the disability and diminished quality of life resulting 
from chronic disease.
    One-third, or approximately $300 billion, of the nation's health 
care budget is spent on older Americans who often have preventable or 
controllable chronic diseases and conditions. Much of the disability in 
old age can be delayed or prevented altogether, potentially improving 
quality of life and saving the nation billions of dollars in health 
care expenditures and the costs of long-term care.
    Chronic disease is not just an issue among older adults. One-third 
of the years of potential life lost before age 65 is due to chronic 
disease. The obesity epidemic in this country is taking its toll on 
young people. Since 1980, obesity rates have doubled among children and 
tripled among adolescents. Unhealthy diet and physical inactivity play 
an important role in many chronic diseases and conditions. As our lead 
prevention agency, CDC needs additional resources to work with states, 
schools and local communities to implement promising approaches for 
preventing obesity.
    To curb the excessive burden of chronic diseases, both in human and 
economic terms, the nation must ensure that research advances are 
applied, evaluated and implemented at the state and local level with 
comprehensive, sustainable prevention programs. CDC plays an essential 
role in translating and delivering at the community level what is 
learned from research--especially ensuring that those populations 
disproportionately affected by chronic disease and disabilities receive 
the benefits of our nation's investment in medical research. Effective 
interventions need to be developed and implemented to reduce the 
disabling consequences of these diseases, including blindness, kidney 
failure, paralysis, fractures, joint deterioration, and limb loss.
    Research to Prevention stands ready to work with the Members of 
this Subcommittee to help make it possible for every state in the 
nation to develop and deliver health promotion, health education and 
disease prevention programs to address chronic diseases and disability. 
By committing a minimum increase of $340 million in fiscal year 2005 
for state-based chronic disease programs, we can work to make this a 
reality.
    All states need and deserve statewide implementation grants for the 
leading causes of death and disability (heart disease and stroke, 
diabetes, cancer and arthritis) and their risk factors (physical 
activity, nutrition, obesity, and tobacco use). Emerging chronic 
conditions, such as epilepsy and complications associated with chronic 
disease, such as vision loss and oral disease must also be addressed. 
States also need to track progress statewide through disease registries 
and behavioral surveys, including the stroke and cancer registries and 
the Behavioral Risk Factor Surveillance System (BRFSS). The BRFSS 
information is essential for planning, conducting and evaluating public 
health programs at the national, state and local levels. Additionally, 
private organizations rely on the survey data to develop health 
promotion programs to reduce the prevalence of unhealthy behaviors and 
to document their effectiveness.
                          youth media campaign
    Research to Prevention supports a $89 million increase above fiscal 
year 2004 to restores funding to its $125 million level in fiscal year 
2001. This campaign--known as VERB--is designed to give kids a positive 
advertising message about being physically active through paid media, 
partnerships, and community efforts. In February 2004, the CDC released 
the first survey results that indicate physical activity among the 
nation's youth is increasing as a result of the VERB campaign. A 34 
percent increase in weekly free-time physical activity sessions among 
8.6 million children ages 9-10 in the United States. R2P believes that 
VERB should be expanded so that even more children will be exposed to 
healthy messages and increase their chances of becoming more physically 
active.
                                 reach
    Research to Prevention supports a $12.7 million increase in the 
REACH program for a total of $50 million in fiscal year 2005. Launched 
in 1999, the REACH 2010 is the cornerstone of CDC's efforts to 
eliminate racial and ethnic disparities in health. This project is 
designed to eliminate health disparities in cardiovascular disease, 
immunizations, breast and cervical cancer screening and management, 
diabetes, HIV infections/AIDS, and infant mortality. The racial and 
ethnic groups targeted by REACH 2010 are African Americans, American 
Indians, Alaska Natives, Asian Americans, Hispanic Americans, and 
Pacific Islanders. REACH 2010 is unique because it works across public 
and private sectors to conduct community-based prevention research to 
identify the causes of health disparities. Culturally appropriate, 
community-driven programs are critical for eliminating racial and 
ethnic disparities in health. A $50 million allocation would support 
expansion of community-driven programs and evaluation of successful 
efforts to build capacity; target action; conduct community/systems 
change; eliminate health disparities; and translate and disseminate 
results.
           preventive health and health services block grant
    Research to Prevention supports an increase of $76.7 million to 
additional clinical services, preventive screening, laboratory 
research, outbreak control, workforce training, public education, data 
surveillance, and program evaluation. The funds are used to target the 
265 national health objectives in Healthy People 2010 which address 
cardiovascular disease, cancer, diabetes, emergency medical services, 
injury and violence, infectious disease, environmental health, 
community fluoridation, and sex offenses. Because of the allowed 
flexibility in the use of the funds, states allocate their block grant 
resources to address areas of greatest need and target populations. A 
strong emphasis is placed on programs for adolescents, communities with 
limited health care services, and disadvantaged populations. Since so 
many states lack funding to address many of the chronic diseases, 
states have used much of their block grant money to address the leading 
killers. This program facilitates coordination between states and their 
local governments since approximately 43 percent of PHHS block grant 
funds were distributed by the states to meet county and local public 
health needs.
             the administration's healthy steps initiative
    Research to Prevention supports the Secretary's goals of reducing 
the burden of chronic diseases and applauds him for his continuing 
commitment to chronic disease prevention. The requested increase of 
$81.3 million to support the Steps to a Healthier U.S. Initiative can 
assist the states, local governments and community organizations to 
increase their efforts to improve health and well being. While the 
states already distribute approximately 75 percent of their CDC 
resources directly to community programs, they still lack the resources 
necessary to reach many of their communities. States are the engine to 
reach those communities and the Secretary's Steps Initiative provides 
the gas for the engine. State-based chronic disease funding and the 
Steps Initiative need to advance together if we are to reduce death and 
disability and enhance quality of life.
    Research to Prevention thanks the Subcommittee for the opportunity 
to submit testimony and stands ready to work with all Members to reduce 
and prevent the economic and social burden of chronic disease on our 
nation.
                     research to prevention members
    American Association of Diabetes Educators; American Cancer 
Society; American College of Preventive Medicine; American Dental 
Association; American Diabetes Association; American Heart Association; 
American Public Health Association; American School Health Association; 
Arthritis Foundation; Association of State and Territorial Chronic 
Disease Program Directors; Association of State and Territorial 
Directors of Health Promotion and Public Health Education; Coalition of 
National Health Education Associations; Center for Science in the 
Public Interest; Eli Lilly and Company; Epilepsy Foundation; Lance 
Armstrong Foundation; Missouri Primary Care Association; National 
Health Council; National Kidney Foundation, Inc.; Oncology Nursing 
Society; Partnership for Prevention; Prevent Blindness America; Society 
for Public Health Education; and YMCA of the USA.

     CDC CHRONIC DISEASE PROGRAMS--FISCAL YEAR 2005 RECOMMENDATIONS
                        [In millions of dollars]
------------------------------------------------------------------------
                                           Fiscal year          Increase
                                 ------------------------------   over
                                                                 fiscal
                                    2003      2004    2005 R2P    year
                                   enacted   enacted   targets    2004
------------------------------------------------------------------------
NATIONAL CENTER CHRONIC DISEASE      963.1   1,024.4   1,613.5     589.0
 PREVENTION AND HEALTH PROMOTION
Chronic Disease Line............     790.5     853.8   1,353.5     499.6
Arthritis.......................      15.6      15.8      25.0       9.2
    Lupus.......................       1.0       1.0  ........  ........
Cancer Prevention and Control...     287.8     313.6     410.0      96.4
    B&C Mort Prev...............     199.4     209.5     250.0      40.5
    WISEWOMAN...................      14.0      14.0      20.0       6.0
    Comprehensive Cancer........       9.4      11.9      25.0      13.1
    Ovarian.....................       4.4       4.9      10.0       5.1
    Prostate....................      14.0      15.5      20.0       4.5
    Colorectal..................      13.4      14.9      25.0      10.1
    Skin........................       1.6       2.2      10.0       7.8
    Registries..................      45.6      49.7      65.0      15.3
Community Health Promotion......      22.1      24.0      37.3      13.3
    BRFSS.......................       6.9       8.1      18.0      10.0
Com Health Promotion............       8.9       8.3       8.3  ........
    Compl/Alt Med...............       1.7       1.8       2.0       0.2
    Glaucoma/Vision Screening...       4.7       5.8       9.0       3.2
Diabetes........................      63.3      66.9     150.0      83.1
Epilepsy........................       7.5       8.2      13.2       5.0
Heart Disease and Stroke........      43.0      45.7      80.0      34.3
    Paul Coverdell Stroke              5.0       5.0       5.0  ........
     Registry...................
Nutrition/Phys Activity/Obesity.      34.1      44.7      75.0      30.3
    Micronutrients..............       5.0       0.4  ........  ........
    Iron Overload...............       0.4       0.4  ........  ........
Oral Health.....................      11.7      12.4      20.0       7.6
Prevention Research Centers.....      26.8      26.7      26.7  ........
Safe Motherhood /Infant Health..      54.0      53.9      53.9  ........
School Health...................      57.8      62.4      82.4      20.0
    Coordinated School Health...      10.8      15.7      35.7      20.0
    HIV.........................      47.0      46.7      46.7  ........
Tobacco.........................      99.9      99.7     130.0      30.3
ADDITIONAL TARGETS:
    STEPS.......................      15.4      43.7     125.0      81.3
    Youth Media Campaign........      51.0      35.8       5.0      89.2
    PHHS BLOCK GRANT............     135.0     133.3     210.0      76.7
    REACH.......................      37.6      37.3      50.0      12.7
------------------------------------------------------------------------

                                 ______
                                 
    Prepared Statement of the Association of University Programs in 
                     Occupational Health and Safety
    Thank you for the opportunity to present testimony to the 
Subcommittee in support of funding for the National Institute for 
Occupational Safety and Health (NIOSH) and for the NIOSH-funded 
Education and Research Centers (ERCs). My name is Jackie Agnew, and I 
am the Director of the Education and Research Center at Johns Hopkins 
University Bloomberg School of Public Health.
    I am testifying on behalf of the Association of University Programs 
in Occupational Health and Safety (AUPOHS), the organization that 
represents 16 multi-disciplinary, NIOSH-supported, university-based 
Education and Research Centers (ERCs). The ERCs are regional resources 
for all parties involved with occupational health and safety--industry, 
labor, government, academia, and the general public. The ERCs play the 
following roles in helping the nation reduce losses associated with 
work-related illnesses and injuries:
  --Prevention Research.--Developing the basic knowledge and associated 
        technologies to prevent work-related illnesses and injuries.
  --Professional Training.--Graduate degree programs in Occupational 
        Medicine, Occupational Health Nursing, Safety Engineering, and 
        Industrial Hygiene to provide qualified professionals in 
        essential disciplines.
  --Research Training.--Preparing doctoral-trained scientists who will 
        respond to future research challenges and who will prepare the 
        next generation of occupational health and safety 
        professionals.
  --Continuing Education.--Short courses designed to enhance 
        professional skills and maintain professional certification in 
        occupational health and safety disciplines. These courses are 
        delivered on-campus at the 16 ERCs as well as through distance 
        learning technologies.
  --Regional Outreach.--Responding to specific requests from local 
        employers and workers on issues related to occupational health 
        and safety.
     the scope of the problem of occupational injury and illnesses
    The many causes of occupational injury and illness represent a 
striking burden on America's health and well-being. Yet, despite 
significant improvements in workplace safety and health over the last 
several decades:
  --There were 5,524 occupational fatalities in 2002, for an average of 
        15 workers per day who died from work-related injuries; and
  --More than 4.7 million workers sustained work-related injuries and 
        illnesses in the private sector alone in that same year.
  --The economic toll of work-related illness and injury on the 
        nation's employers, workers and their families, and society 
        overall reached an estimated $45.8 billion in 2001, with $137.4 
        to $229 billion more in indirect costs.
    This is an especially tragic situation because most work-related 
fatalities, injuries and illnesses are preventable with effective, 
professionally directed, health and safety programs. Although our 
nation has made tremendous progress in reducing occupational illnesses 
and injuries during the past 30 years, leading to a decline in the rate 
of total recordable cases from 11.0 to 7.1 cases per 100 full-time 
workers between 1973 to 1997, the burden of occupational illnesses and 
injuries remains unacceptably high.
    Furthermore, we do not live in a static environment. The rapidly 
changing workplace continues to present new health risks to American 
workers that need to be addressed through occupational safety and 
health research. For example, by the year 2005, an estimated 33 percent 
of the U.S. workforce will be 45 years or older. Work-injury fatality 
rates begin increasing at age 45, with rates for workers 65 years and 
older nearly three times as high as the average for all workers. 
Despite being the primary federal agency for occupational disease and 
injury prevention in the nation, NIOSH receives only about $1 per 
worker per year for its mission of research, professional education, 
and outreach.
                           homeland security
    The heightened awareness of terrorist threats, and the increased 
responsibilities of first responders and other homeland security 
professionals, illustrates the need for strengthened workplace health 
and safety in the ongoing war on terror. The NIOSH ERCs play a crucial 
role in preparing Occupational Safety and Health (OSH) professionals to 
identify and ameliorate vulnerabilities to terrorist attacks and other 
workplace hazards and increase readiness to respond to biological, 
chemical, or radiological attacks.
    Thanks to the Subcommittee's support for occupational health and 
safety research, NIOSH developed more effective methods to test for 
anthrax contamination in congressional offices. These procedures were 
quickly adopted by the Coast Guard, the FBI, and government building 
contractors.
    In addition, occupational health and safety professionals have 
worked for several years with emergency response teams to minimize 
losses in the event of a disaster. NIOSH took a lead role in protecting 
the safety of emergency responders in New York City and Virginia, with 
ERC-trained professionals applying their technical expertise to meet 
immediate protective needs and conducting ongoing activities to 
safeguard the health of clean-up workers.
    In the face of the growing concerns surrounding homeland security, 
ERCs have rapidly upgraded research coordination and expanded training 
opportunities, including sponsoring national and regional forums on 
response to bioterrorism and other disasters.
          the need for occupational safety and health manpower
    The NIOSH ERCs were reviewed by the DHHS Office of the Inspector 
General in 1995. The resulting report affirmed the efficacy of the ERCs 
in producing graduates who pursue careers in occupational safety and 
health. Since the ERCs are regional, they are ready to respond to 
various trends in industries throughout the country. And because they 
provide training that is multi-disciplinary, ERCs graduate 
professionals who can protect workers in virtually every walk of life. 
Despite the recognized success of the ERCs in training qualified 
occupational health and safety professionals, the country continues to 
have ongoing shortages. The manpower needs are especially acute for 
doctoral-level trained professionals who can conduct research and help 
in implementing the National Occupational Research Agenda.
    In May 2000, the Institute of Medicine issued its final report on 
the education and training needs for occupational safety and health 
(OSH) professionals in the United States. This report concluded that 
``the continuing burden of largely preventable occupational diseases 
and injuries and the lack of adequate OSH services in most small and 
many larger workplaces indicate a clear need for more OSH professionals 
at all levels.'' Specific needs identified by the IOM report include:
  --An insufficient number of doctoral-level graduates in occupational 
        safety, thus limiting the nation's capacity to perform 
        essential research and training in traumatic injury prevention.
  --An inability to attract physicians and nurses into formal OSH 
        academic training programs, thus limiting the resources needed 
        to deliver occupational health services.
          new niosh initiative: moving research into practice
    The health of the U.S. economy depends upon a healthy and 
productive workforce. Through its targeted research and prevention 
programs, as well as its programs of tracking diseases, injuries, and 
hazards; capacity building; and rapid dissemination of useful 
information, NIOSH contributes to the nation's progress in reducing 
workplace injuries and illnesses and enhancing the health and safety of 
U.S. workers.
    In 1996, NIOSH established the National Occupational Research 
Agenda (NORA), a framework to guide and promote occupational safety and 
health research through a consensus-building process with more than 500 
outside organizations and individuals. The NORA process identified the 
top 21 research priorities for occupational safety and health for the 
nation.
    NIOSH has long been committed to translating research results into 
practical recommendations and disseminating them through its 
publications. For example, ``Alerts'' help employers and workers 
identify and respond to work-related health hazards, and ``Workplace 
Solutions'' provide practical advice on hazard control. NIOSH is now 
building even further on these efforts by launching Research to 
Practice, or r2p, a new initiative to transfer research findings, 
technologies, and information into effective prevention practices and 
products and to promote their adoption in workplaces.
    The goal of the NIOSH r2p initiative will be to increase the use in 
the workplace of effective NIOSH and NIOSH-funded research findings. 
NIOSH will achieve this goal by translating its research findings into 
practice as quickly as possible, targeting its dissemination efforts, 
and evaluating and demonstrating the effectiveness of these efforts in 
improving worker health and safety. ERCs will play a prominent role in 
this process.
    In addition, in coordination with the HHS Secretary's Steps to a 
HealthierUS initiative, NIOSH is introducing Steps to a HealthierUS 
Workforce to encourage workplace health programs that effectively 
integrate or coordinate efforts to promote both personal health and 
workplace health. Through NORA, r2p, and Steps to a HealthierUS 
Workforce, NIOSH will continue to work to achieve its goal of 
preventing work-related illnesses and injuries. These efforts will 
continue to be enhanced through partnerships, outreach, and capacity-
building to enable NIOSH to leverage resources and expertise.
                  recommendation for fiscal year 2005
    AUPOHS requests an increase of $5 million for ERCs, and we are 
supporting a $30 million total increase over the $277 million 
appropriated in fiscal year 2004 for NIOSH.--This would provide $307 
million for NIOSH and $24.7 million for ERCs in fiscal year 2005. Given 
that much of NIOSH's extramural research program is carried out by our 
institutions, sustaining the academic infrastructure provided by the 
ERCs is essential to the success of NORA, r2p, and Steps to a 
HealthierUS Workforce. Our recommendation would ensure that our 
nation's universities have the capacity and manpower to implement these 
initiatives and expand training programs to improve the health and 
productivity of American workers.
    Funding for NIOSH and the ERCs would reduce the staggering burden 
of occupational illnesses and injury on the American economy, recently 
estimated at $240 billion. To put this number in perspective, these 
costs dwarf the $33 billion for AIDS and the $67 billion for 
Alzheimer's disease, and they are greater than the $164 billion 
economic cost for all circulatory diseases and the $171 billion cost of 
cancer. Yet federal support for occupational safety and health research 
pales in comparison--for example, cancer research receives 17 times as 
much federal funding.
    Thank you for the opportunity to report the great need for research 
and training in occupational safety and health.
         niosh-supported education and research centers (ercs)
    Deep South ERC (University of Alabama at Birmingham and Auburn 
University); Harvard University; Johns Hopkins University; New York /
New Jersey ERC (Mt. Sinai Medical Center and Hunter College); Northern 
California ERC (UC Berkeley, UCSF); Southern California ERC (UCLA and 
UC Irvine); Texas ERC (University of Texas and Texas A&M University); 
University of Cincinnati; University of Illinois at Chicago; University 
of Iowa; University of Michigan; University of Minnesota; University of 
North Carolina at Chapel Hill; University of South Florida; University 
of Utah; and University of Washington.
                                 ______
                                 
               Prepared Statement of Rotary International
    Chairman Specter, Senator Harkin, members of the Subcommittee, 
Rotary International appreciates this opportunity to submit testimony 
in support of the polio eradication activities of the U.S. Centers for 
Disease Control and Prevention (CDC). The effort to eradicate polio has 
been likened to a race--a race to reach the last child. This race 
requires the dedication to make the sacrifices necessary to achieve 
success. Like some great relay team, the major partners in the global 
polio eradication effort have joined with national governments around 
the world in an unprecedented demonstration of commitment to cross the 
finish line of this historic public health goal. We cannot allow the 
great distance we have traveled to diminish our resolve. Though we may 
be weary, our adversary is weakening. The victory over polio is closer 
than ever!
           progress in the global program to eradicate polio
    I would like to take this opportunity to thank you Chairman 
Specter, Senator Harkin, and members of the Subcommittee for your 
tremendous commitment to this effort. Without your support of CDC's 
polio eradication activities, the battle against polio would be 
impossible. Thanks to your leadership in appropriating funds, the 
international effort to eradicate polio has made tremendous progress.
  --The number of polio cases has fallen from an estimated 350,000 in 
        1988 to less than 800 in 2003--a more than 99 percent decline 
        in reported cases (see Exhibit A). More than 200 countries and 
        territories are polio-free, including 4 of the 5 most populous 
        countries in the world (China, United States, Indonesia, and 
        Brazil).
  --Transmission of the poliovirus has never been more geographically 
        confined. The Western Hemisphere, the Western Pacific and the 
        European regions are certified polio-free. Wild poliovirus 
        transmission is confined to a limited number of polio ``hot-
        spots'' within six countries.
  --More than 2 billion children worldwide have been immunized during 
        NIDs in the last 5 years, including more than 150 million in a 
        single day in India.
  --All polio-endemic countries in the world have conducted NIDs and 
        established high quality surveillance of Acute Flaccid 
        Paralysis (AFP). The eradication of polio in the Democratic 
        Republic of Congo, Sudan, and Somalia shows that polio 
        eradication strategies are successful even in countries 
        affected by civil unrest.
    From the launch of the global initiative in 1988, to the 
eradication target date of 2005, 5 million people who would otherwise 
have been paralyzed will be walking because they have been immunized 
against polio. Tens of thousands of public health workers have been 
trained to investigate cases of acute flaccid paralysis and manage 
massive immunization programs. Cold chain, transport and communications 
systems for immunization have been strengthened. A network of 147 polio 
laboratories has been established to analyze suspected cases of polio 
and monitor transmission of polio. This network will continue to 
support the surveillance of other diseases long after polio has been 
eradicated.
    Give the tremendous progress that has been made in reducing the 
incidence of polio and diminishing the areas in which the virus 
circulates, the world currently faces an unprecedented opportunity to 
stop the transmission of wild poliovirus. However, significant 
challenges remain as obstacles to the ultimate achievement of our goal 
of a polio-free world. In 2003, Nigeria surpassed India to become the 
country with the highest number of polio cases. The surge in polio 
cases in Nigeria also resulted in importations of cases into several of 
the countries that neighbor Nigeria. The risk of importations into west 
and central African countries, and around the world, is magnified by 
financial constraints that limit the scope of immunization activities.
    Continued political commitment is essential in all polio endemic 
countries, to support the acceleration of eradication activities. The 
ongoing support of donor countries is essential to assure the necessary 
human and financial resources are made available to polio-endemic 
countries. Access to children is needed, particularly in Nigeria, where 
political and financial differences between key states and the federal 
government were unexpectedly given voice in the form of untrue rumors 
about the safety of the oral polio vaccine. As a result, immunization 
activities in the states that need them most were delayed and/or 
suspended during the effort to address local concerns. Polio-free 
countries must maintain high levels of routine polio immunization and 
surveillance. The continued leadership of the United States is critical 
to ensure we meet these challenges.
                    the role of rotary international
    Since 1985, Rotary International, a global association of more than 
30,000 Rotary clubs, with a membership of over 1.2 million business and 
professional leaders in 166 countries, has been committed to battling 
this crippling disease. In the United States today there are nearly 
7,700 Rotary clubs with some 400,000 members. All of our clubs work to 
promote humanitarian service, high ethical standards in all vocations, 
and international understanding. Rotary International stands hand-in-
hand with the United States Government and governments around the world 
to fight polio through local volunteer support of National Immunization 
Days, raising awareness about polio eradication, and providing 
financial support for the initiative. In 2003, members of Rotary clubs 
around the world announced the results of their second polio 
eradication fundraising campaign. Rotarians far exceeded the U.S. $80 
million goal they had set by raising U.S. $119 million in cash and 
commitments. Rotary firmly believes that the vision of a world without 
polio can be realized and that the time for action is now. By the time 
the world is certified polio-free, Rotary's contribution to the global 
polio eradication effort will exceed U.S. $600 million.
    Rotary International's commitment to the global polio eradication 
represents the largest contribution by an international service 
organization to a public health initiative ever. These funds have been 
allocated for polio vaccine, operational costs, laboratory 
surveillance, cold chain, training and social mobilization in 122 
countries. More importantly, tens of thousands of Rotarians have been 
mobilized to work together with their national ministries of health, 
UNICEF and WHO, and with health providers at the grassroots level in 
thousands of communities.
    In the United States, Rotary has formed and leads the United States 
Coalition for the Eradication of Polio, a group of committed child 
health advocates that includes Rotary, the March of Dimes Birth Defects 
Foundation, the American Academy of Pediatrics, the Task Force for 
Child Survival and Development, the United Nations Foundation, and the 
U.S. Fund for UNICEF. These organizations join us in expressing our 
gratitude to you for your staunch support of the international program 
to eradicate polio. For fiscal year 2004, you appropriated a total of 
$106.4 million for the polio eradication efforts of the CDC. This 
investment has helped to make the United States the leader among donor 
nations in the drive to eradicate this crippling disease.
                    fiscal year 2005 budget request
    For fiscal year 2005, we respectfully request that you maintain the 
level of funding that was provided in fiscal year 2004 ($106.4 million) 
for the targeted polio eradication efforts of the Centers for Disease 
Control and Prevention. It is important to meet this level of funding 
due to the increased costs of the accelerated eradication program, and 
to respond to the increase in supplementary immunization activities in 
endemic countries, the need to maintain immunity in polio-free areas 
and maintain certification standard surveillance. This will ensure that 
we protect the substantial investment we have made to protect the 
children of the world from this crippling disease by enabling us to 
conduct the necessary eradication activities to eliminate polio in its 
final strongholds--the Indian sub-continent and sub-Saharan Africa.
 the role of the u.s. centers for disease control and prevention (cdc)
    Rotary commends CDC for its leadership in the global polio 
eradication effort, and greatly appreciates the Subcommittee's support 
of CDC's polio eradication activities. For fiscal year 2004, the 
Subcommittee appropriated a total of $106.4 million for the CDC's 
global polio eradication activities. Due to Congress' unwavering 
support, in 2004 CDC is able to:
  --Support the international assignment of more than 200 long-term 
        epidemiologists, virologists, and technical officers to assist 
        the World Health Organization and polio-endemic countries to 
        implement polio eradication strategies, and 16 technical staff 
        to assist UNICEF and polio-endemic countries. This includes 19 
        CDC staff on direct assignment to WHO and UNICEF.
  --Provide $50 million to UNICEF for approximately 540 million doses 
        of polio vaccine and $9 million for operational costs for NIDs 
        in all polio-endemic countries and other high-risk countries in 
        Asia, the Middle East and Africa. Most of these NIDs would not 
        take place without the assurance of CDC's support.
  --Provide over $18 million to WHO for surveillance, technical staff 
        and NIDs' operational costs, primarily in Africa. As successful 
        NIDs take place, surveillance is critical to determine where 
        polio cases continue to occur. Effective surveillance can save 
        resources by eliminating the need for extensive immunization 
        campaigns if it is determined that polio circulation is limited 
        to a specific locale.
  --Train virologists from all over the world in advanced poliovirus 
        research and public health laboratory support. CDC's Atlanta 
        laboratories serve as a global reference center and training 
        facility.
  --Provide the largest volume of both operational (poliovirus 
        isolation) and technologically sophisticated (genetic 
        sequencing of polio viruses) lab support to the 147 
        laboratories of the global polio laboratory network. CDC has 
        the leading specialized polio reference lab in the world.
  --Serve as the primary technical support agency to WHO on scientific 
        and programmatic research regarding: (1) laboratory containment 
        of wild poliovirus stocks following polio eradication, and (2) 
        when and how to stop or modify polio vaccination worldwide 
        following global certification of polio eradication in 2005.
                  other benefits of polio eradication
    Increased political and financial support for childhood 
immunization has many documented long-term benefits. Polio eradication 
is helping countries to develop public health and disease surveillance 
systems useful in the control of other vaccine-preventable infectious 
diseases.
    Already all 47 countries of the Americas are free of indigenous 
measles, due in part to improvements in the public health 
infrastructure implemented during the war on polio. The disease 
surveillance system--the network of laboratories and trained personnel 
established during the Polio Eradication Initiative--is now being used 
to track measles, rubella, yellow fever, meningitis, and other deadly 
infectious diseases. NIDs for polio have been used as an opportunity to 
give children essential vitamin A, which, like polio, is administered 
orally, saving the lives of 1.25 million children since 1998. The 
campaign to eliminate polio from communities has led to an increased 
public awareness of the benefits of immunization, creating a ``culture 
of immunization'' and resulting in increased usage of primary health 
care and higher immunization rates for other vaccines. It has improved 
public health communications and taught nations important lessons about 
vaccine storage and distribution, and the logistics of organizing 
nation-wide health programs. Additionally, the unprecedented 
cooperation between the public and private sectors serves as a model 
for other public health initiatives. Polio eradication is a cost-
effective public health investment, as its benefits accrue forever.
        resources needed to finish the job of polio eradication
    The World Health Organization estimates that $765 million is needed 
from donors for the period 2004-2005 to help polio-endemic countries 
complete the polio eradication strategy. In the Americas, some 80 
percent of the cost of polio eradication efforts was borne by the 
national governments themselves. However, as the battle against polio 
is taken to the poorest, least-developed nations on earth, and those in 
the midst of civil conflict, many of the remaining polio-endemic 
nations can contribute only a small percentage of the needed funds. In 
some countries, up to 100 percent of the NID and other polio 
eradication costs must be met by external donor sources. We ask the 
United States to continue its financial leadership in order to see this 
initiative to its successful conclusion as quickly as possible.
    The United States' commitment to polio eradication has stimulated 
other countries to increase their support. Other countries that have 
followed America's lead and made special grants for the global Polio 
Eradication Initiative include the United Kingdom ($425 million), the 
Netherlands ($112 million), and Canada ($85 million). Japan, which has 
contributed $231 million, recently expanded its support to polio 
eradication efforts in Africa. Even the tiny country of Luxembourg has 
invested in global polio eradication by contributing $4.2 million. In 
both 2002 and 2003 the members of the G8 committed to provide 
sufficient resources to eradicate polio as part of its Africa Action 
Plan. In addition to the ongoing contributions made by historic donors 
such as United States, the United Kingdom, and Canada, new commitments 
of $37 million and $4 million were made by France and Russia in 
response to the G8 pledge.
    Intense political commitment on the part of endemic nations is also 
essential to ensuring polio eradication is achieved. In January 2004, 
health ministers of the six remaining endemic countries (Afghanistan, 
Egypt, India, Niger, Nigeria, and Pakistan) gathered at a meeting 
convened at WHO in Geneva to declare their commitment to supporting 
intensified supplementary immunization activities in the ``Geneva 
Declaration for the Eradication of Poliomyelitis.'' In addition, 
resolutions supporting polio eradication were taken by the African 
Union and the Organization of the Islamic Conference. Each of these 
resolutions encourages member states to place a high priority on 
completing the job of polio eradication.
    Your discipline, commitment and endurance have brought us to the 
brink of victory in the great race against this ancient scourge. Polio 
cripples and kills. It deprives our children of the capacity to run, 
walk and play. Other great health crises loom on the horizon. Your 
continued support for this initiative helps ensure that today's 
children possess the strength and vitality to grow up and fight against 
the health threats of future generations.


                                 ______
                                 
        Prepared Statement of the National Council on Folic Acid
    The National Council on Folic Acid (NCFA) is a partnership of over 
80 national organizations and associations, state folic acid councils 
and government agencies whose mission is to improve health by promoting 
the benefits and consumption of folic acid. Our goals are to reduce 
folic acid preventable birth defects by recommending that women of 
childbearing age take 400 micrograms of synthetic folic acid daily, 
from fortified foods and/or supplements, in addition to consuming food 
folate from a varied diet and to communicate and promote emerging and 
new science on folic acid, especially that relate to maternal and child 
health. The undersigned members of NCFA respectfully recommend that at 
least $5 million be appropriated in fiscal year 2005 for the Centers 
for Disease Control and Prevention's Folic Acid Education Campaign.
                      folic acid and birth defects
    Folic acid, a B-vitamin, is critical for proper cell division and 
growth. It is especially important during the early weeks of pregnancy 
when the embryonic neural tube, which later becomes the brain and 
central nervous system, is forming and closing. Defects in closure of 
the neural tube result in the development of a group of birth defects 
commonly referred to as neural tube defects (NTDs). The two most common 
NTDs are spina bifida and anencephaly. Closure of the neural tube 
occurs early in the development, before most women know that they are 
pregnant. The consumption of only 400 micrograms of folic acid daily 
taken prior to conception and early in gestation can prevent as many as 
70 percent of NTDs.
    The birth defects such as anencephaly and spina bifida, have a 
great social and economic impact on our nation. The average total 
lifetime cost to society for each infant born with spina bifida is 
approximately $532 thousand, while estimated annual medical and 
surgical costs for persons living with spina bifida in the United 
States exceed $200 million.\1\ Fortification of the grain supply is a 
significant factor in the 32 percent decline in the rates of spina 
bifida. In order to continue this trend, however, considerable effort 
is still needed to increase the number of reproductive aged women who 
consume 400 micrograms of folic acid each day. But, due to the growing 
popularity of low-carbohydrate diets many women are abandoning bread 
and other grains, thereby reducing their intake of folic acid.
---------------------------------------------------------------------------
    \1\ Centers for Disease Control and Prevention, MMWR, 1989.
---------------------------------------------------------------------------
                  folic acid awareness and counseling
    Only 20 percent of women know that folic acid can prevent birth 
defects.\2\ Consequently, women generally are low consumers of folic 
acid, with only 30 percent of all women consuming a vitamin supplement 
with folic acid every day. Of those who take a daily multi-vitamin, 25 
percent forget to take it every day.
---------------------------------------------------------------------------
    \2\ March of Dimes, June 2002.
---------------------------------------------------------------------------
    We know that health care providers should screen women of 
childbearing age for folic acid consumption in an effort to promote 
taking a daily multi-vitamin and to prevent neural tube defects. We 
also know that 53 percent of women not taking a daily multi-vitamin 
indicated that they would likely do so if their health provider simply 
encouraged them.\3\
---------------------------------------------------------------------------
    \3\ March of Dimes, June 2002.
---------------------------------------------------------------------------
    Following that logic, the undersigned NCFA members recommend that 
at least $5 million be appropriated to fund the Centers for Disease 
Control and Prevention's Folic Acid Education Campaign, which is housed 
with the National Center on Birth Defects and Developmental 
Disabilities. This funding is necessary to continue the Center's 
programming devoted on raising folic acid public awareness and training 
of health professionals on how to discuss folic acid consumption with 
their patients.
                                 ______
                                 
    Prepared Statement of the American Academy of Family Physicians
    The 93,700-member American Academy of Family Physicians submits 
this statement for the record in support of the Section 747 Primary 
Care Medicine and Dentistry Cluster. The Academy also supports the 
Agency for Healthcare Research and Quality (AHRQ) and rural health 
programs.
    Section 747 is the only national program that funds family 
physician training and includes dollars for general internal medicine/
general pediatrics; physician assistants and general/pediatric 
dentistry. The fiscal year 2004 spending bill provides only $82 million 
to Section 747, a figure that is $10 million below the fiscal year 2003 
levels. The Congressionally established Advisory Committee on Training 
in Primary Care Medicine and Dentistry (ACTPCMD) recommends $198 
million for Section 747.
        section 747 primary care medicine and dentistry cluster
Background
    Section 747 supports family medicine training programs in medical 
school and in residency programs. It is specifically designed to meet 
two goals: increase the number of primary care physicians, and boost 
the number of people who will provide care to the underserved. The 
Institute of Medicine defines primary care physicians as family 
physicians, general internists and general pediatricians.
    Family physicians provide comprehensive, coordinated and continuing 
care to patients of both genders and all ages and ethnicities, 
regardless of medical condition. These residency-trained, primary care 
specialists treat babies with ear infections, adolescents who are 
obese, adults with depression and seniors with multiple, chronic 
illnesses. And because they focus on prevention, primary care, and 
integrating care for patients, they are able to treat illnesses early; 
cost-effectively and when necessary, help patients navigate our complex 
health system and find the right subspecialists.
    Section 747 funding has led thousands of physicians to go into 
primary care and family medicine and 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 in family medicine or primary care;
  --Practiced in a rural area; or
  --Practiced in a whole county Primary Care Health Professions 
        Shortage Area (HPSAs) (i.e., counties with inadequate numbers 
        of family physicians, general pediatricians, general internists 
        or obstetrician/gynecologists).
    The study showed that continued funding during the years of medical 
school training had more of a positive impact than intermittent 
funding.
    Another Graham Center report revealed that more Americans depend on 
family physicians than any other medical specialty: without family 
physicians, the majority of U.S. counties would become Primary Care 
Health Professions Shortage Areas. Of the 3,142 counties in the United 
States, 1,184 (38 percent) are full or partial county HPSAs, which 
includes more than 41 million Americans.
Funding for Programs Historically Under Threat
    However, the health professions programs have been under fire for 
many years, and, as a result, funding has been threatened during 
several fiscal cycles. For example, the Administration's fiscal year 
2005 budget would eliminate funding for Section 747 and cuts funding 
severely for Title VII. Reasons differ for these cutbacks, but center 
mainly around disagreements regarding the long-term role of the federal 
government in training physicians, and uncertainty about program 
outcomes and effectiveness.
    Most recently, the Office of Management and Budget (OMB) attempted 
to express these arguments in the 2003 Program Assessment Rating Tool 
(PART). In that document, OMB criticized all of the Title VII Health 
Professions programs as lacking a focused objective. However, Section 
747, in particular, has a clear purpose and has been successful in 
achieving its goals. The OMB evaluation lumps all of the programs 
together and does not evaluate them individually. By definition, these 
programs will have different goals, different levels of effectiveness 
and different histories, making the PART evaluation unsophisticated, at 
best. Additionally, since the federal government has been struggling 
with a budget shortfall, programs with the slightest amount of negative 
attention have been tempting targets for budget cutbacks.
    Nonetheless, these training programs still enjoy a great deal of 
support from members of the Appropriations Committees in both the 
Senate and House, which the Academy appreciates. And, with the 
exception of the fiscal year 2004 spending bill, Congress has 
consistently restored funding for these programs.
    The Academy strongly believes that the federal government must 
maintain appropriate funding for Section 747 family medicine training 
programs. The rationale for this comes from two sources: the steady 
reliance on family physicians in the current U.S. healthcare system and 
the Academy's new proposal to restructure future Section 747 family 
medicine training programs for the coming healthcare system. In short, 
family physicians are key to a modern healthcare system and more money 
is needed to modernize their training.
Preserve the U.S. Health Care Safety Net
    The Academy supports the Administration's commitment to funding 
increases to build more Community Health Centers (CHC) and supplement 
the National Health Service Corps (NHSC). However, we believe that 
increasing funding for CHCs and the NHSC is only a partial solution. 
Without support for family physician training, there will be fewer of 
the physicians who work in these centers or practice in underserved 
areas. Thousands of family physicians will be needed if the growth in 
the number of CHCs sites and NHSC staff is to be realized.
    Specifically, nearly half of the physicians who staff the nation's 
Community Health Centers are family physicians. And, since 1971, the 
National Health Service Corps has placed more than 18,000 health care 
providers in underserved areas: almost half of the NHSC doctors were 
family physicians. Finally, according to data from the National 
Association of Community Health Centers, in 2002, the majority of CHC 
employees were primary care physicians who were responsible for almost 
22 million patient visits.
Invest in Cost-Effective, Quality Care
    Unlike all other developed countries, the United States does not 
have a primary care-based health care system. While other developed 
countries have about equal numbers of primary care doctors and 
subspecialists, less than one-third of the U.S. physician workforce is 
primary care doctors (including family physicians). As a result, about 
two thirds of the U.S. physician workforce is made up of 
subspecialists.
    In addition, compared to those in other developed countries, we 
spend the most per capita on healthcare but have the worst healthcare 
outcomes. More than 20 years of evidence have shown that a primary 
care-based health system produces greater health and economic benefits. 
Boosting support for Section 747, which funds training for family 
physicians and for other primary care disciplines, could allow patients 
in the United States to enjoy those benefits.
    Specifically, research reveals that primary care is effective: 
leading to reduced all-cause mortality and mortality due to 
cardiovascular and pulmonary diseases; less emergency department and 
hospital use; better preventive care; better detection of breast 
cancer, and reduced incidence and mortality due to colon and cervical 
cancer. Studies have also shown proof of efficiency: fewer tests; 
higher patient satisfaction; lower medication use and lower care-
related costs. Finally, the data indicates that primary care promotes 
equity among different populations: health disparities are reduced, 
particularly for areas with the highest income inequality, resulting in 
improved vision, more complete immunization, better blood pressure 
control, and better oral health. Supporting Section 747 family medicine 
training would produce more family physicians, physicians who are cost-
effective and provide high quality care.
              agency for healthcare, research and quality
    The Academy recommends $443 million for the Agency for Healthcare, 
Research and Quality (AHRQ). AHRQ conducts primary care and health 
services research geared to physician practices, health plans and 
policymakers that helps the American population as a whole. In short, 
the agency translates research findings from basic science entities 
like the National Institutes of Health (NIH) into information that 
doctors can use every day in their practices. 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 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 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.
Provisions in the Medicare Modernization Act
    In addition, the new Medicare law also directs the agency to study 
the ``clinical effectiveness and appropriateness of specified health 
services and treatments.'' While the law authorizes $50 million for 
this effort, the Academy supports the $75 million figure that is 
included in the Senate budget resolution.
    Moreover, the law asks the agency to establish a new ``Citizens' 
Health Care Working Group,'' to initiate a nationwide public debate 
about improving the health care system with the goal of providing every 
America high quality and affordable health care coverage. The AAFP also 
supports funding for this new commission.
                         rural health programs
    Continued funding for rural programs is vital to provide adequate 
health care services to America's rural citizens. We support the 
Federal Office of Rural Health Policy; Area Health Education Centers; 
the Community and Migrant Health Center Program; and the NHSC. State 
rural health offices, funded through the National Health Services Corps 
budget, help states implement these programs so that rural residents 
benefit as much as urban patients.
                               conclusion
    The Academy urges Congress to increase funding for Section 747 
family medicine training (the Advisory Committee on Training in Primary 
Care Medicine and Dentistry $198 million for Section 747); $443 million 
for AHRQ and support for rural health programs. Federal support is 
vital to sustain and improve America's health care system.
                                 ______
                                 
           Prepared Statement of the Tri-Council for Nursing
    The Tri-Council for Nursing appreciates the opportunity to comment 
on fiscal year 2005 appropriations for nursing programs. The Tri-
Council for Nursing is an alliance of four national nursing 
organizations--the American Association of Colleges of Nursing (AACN), 
the American Nurses Association (ANA), the American Organization of 
Nurse Executives (AONE), and the National League for Nursing (NLN). The 
Tri-Council is focused on leadership and excellence in nursing. 
Together, we represent the breadth and scope of nursing; including 
practicing nurses, nurse executives, nurse educators, and nurse 
researchers.
    The Tri-Council gratefully acknowledges this Subcommittee's support 
for nursing education and research. We appreciate your continued 
recognition of the important role nurses play in the delivery of health 
care services and the increased need to fund nursing education 
programs, nursing research, and innovative practice models. 
Unfortunately, the nursing shortage continues to worsen, therefore we 
are again urging you to invest in nursing.
    Today, the burgeoning nursing shortage is impacting health care 
delivery throughout the nation. The increasing health care demands of 
the aging U.S. population and changes in the nurse workforce have 
combined to create a shortage unlike any other. A fundamental shift has 
occurred in the registered nurse (RN) workforce over the last two 
decades. As occupational opportunities for young women have expanded, 
and the changing health care environment has increased stresses on 
nursing, the number of young people entering nursing has declined. The 
lack of young people in nursing has resulted in a steady and dramatic 
increase in the average age of the U.S. nurse. Today, the average 
working RN is over 43 years old. The average nurse educator is over 50 
years old.
    This shortage is growing just as the need for nursing services is 
mounting. America's demand for nursing care is expected to balloon over 
the next 20 years as a result of the aging of the population, advances 
in technology, and various economic and policy factors. On February 11, 
2004, the Bureau of Labor Statistics reported that registered nursing 
will have the greatest job growth of all U.S. professions in the time 
period spanning 2002-2012. During this ten-year period, health care 
facilities will need to fill more than 1.1 million RN job openings. The 
Division of Nursing at the Health Resources and Services Administration 
projects that, absent aggressive intervention, the supply of nurses in 
America will fall 29 percent below requirements by the year 2020.
    The nursing shortage is already having a detrimental impact on the 
health care system. Numerous recent studies have shown that nursing 
shortages contribute to medical errors, poor patient outcomes, and 
increased mortality rates. A study published in the May 30, 2002, New 
England Journal of Medicine reported that higher levels of nursing care 
correlate with better patient care. And a Joint Commission on the 
Accreditation of Healthcare Organizations (JCAHO) study published in 
2002 shows that nearly one-quarter of all unanticipated deaths or 
injuries result from nurse shortages. Another study published in the 
October 23, 2002 Journal of the American Medical Association found that 
among the surgical patients studied, there was a pronounced correlation 
between nursing shortages and both patient mortality and failure to 
rescue.
    This growing nursing shortage has effects well beyond domestic 
health care. Nurses are integral in everything from adequate terrorism 
preparedness, to veterans' health delivery, to disaster response. In 
addition, the activation of military reserves is drawing nurses out of 
the domestic labor market. Therefore, this shortage threatens our very 
strength as a nation.
                     nursing workforce development
    Federal support for Nursing Workforce Development in Title VIII of 
the Public Health Service Act (PHSA) is unduplicated and essential. 
Recognizing the impact of the nursing shortage, the 107th Congress took 
the visionary step of passing the Nurse Reinvestment Act (Public Law 
107-205). This law improved the programs of Title VIII to meet the 
unique characteristics of today's shortage. It contained public service 
announcements, geriatric training grants, and a nurse faculty loan 
repayment program. It also expanded existing programs in Title VIII to 
include a scholarship program, career ladder programs, and retention 
grants for enhancing patient care delivery systems.
    In fiscal year 2004, the hard work of this Subcommittee resulted in 
$142 million in funding for Title VIII programs. We strongly urge you 
to increase funding for Title VIII programs by at least $63 million to 
a total of $205 million in fiscal year 2005. The Tri-Council believes 
that the need for this increase is borne out by the HRSA information 
for 2003 indicating that only 2 percent of the applications for nursing 
scholarships were funded, and a mere 8 percent of the nurse education 
loan repayments were funded.
    The Title VIII authorities are:
Nurse Education, Practice, and Retention Grants
    This section, formerly known as the Basic Nurse Education and 
Practice, was expanded and reorganized by the Nurse Reinvestment Act. 
Education grant areas were reorganized to include: expanding 
enrollments in baccalaureate nursing programs; developing internship 
and residency programs to enhance mentoring and specialty training; and 
providing new technologies in education including distance learning.
    Practice grant areas include: expanding practice arrangements in 
non-institutional settings to improve primary health care in medically 
underserved communities; providing care for underserved populations 
such as the elderly, HIV/AIDS patients, substance abusers, homeless, 
and domestic abuse victims; providing skills necessary to practice in 
existing and emerging health systems; and developing cultural 
competencies.
    Retention grant areas include career ladders and improved patient 
care delivery systems. The career ladders program supports education 
programs designed to assist individuals in obtaining clinical and 
theoretical education required to enter the profession, and to promote 
career advancement within nursing. In fiscal year 2003, HRSA received 
301 applications for career ladder grants. Unfortunately, funding 
levels allowed HRSA to award a total of 12 grants.
    Enhancing patient care delivery system grants encourage nurses to 
remain in patient care by providing grants to facilities to enhance 
collaboration and communication among nurses and other health care 
professionals, and to promote nurse involvement in the organizational 
and clinical decision-making processes of a health care facility. Best 
practices for these nurse administration programs have been identified 
by the American Nurse Credentialing Center's Magnet Recognition 
Program. These best practices have been shown to double nurse retention 
rates, increase nurse satisfaction, and improve patient care. In fiscal 
year 2003, HRSA received 122 applications for enhanced patient care 
delivery systems; HRSA was able to fund 14.
    Nurse Education, Practice, and Retention Grants received $31.8 
million in fiscal year 2004 appropriations.
National Nurse Service Corps
    The nurse service corps is comprised of a loan repayment program 
and a scholarship program, the Secretary of HHS has the authority to 
allocate funds between the two areas. The Nurse Education Loan 
Repayment Program (NELRP) repays nursing student loans in return for at 
least 2 years of practice in a facility with a critical nursing 
shortage. For the first 2 years of service, the NELRP will repay 60 
percent of the RN's student loan balance. If the nurse elects to stay 
for another year, an additional 25 percent of the loan will be repaid. 
Within 3 years, a nurse can pay off 85 percent of his/her student 
loans.
    The NELRP has benefited from the support of this Subcommittee, as 
well as the administration. It boasts a proven track record of 
delivering nurses to facilities hardest hit by the nursing shortage. 
HRSA has given NELRP funding preference to skilled nursing facilities, 
disproportionate share hospitals, and departments of public health. 
However, lack of funding has hindered the full implementation of this 
program. In fiscal year 2003, HRSA received more than 8,300 
applications for the NELRP. Due to lack of funding, only 602 loan 
repayments were awarded. Therefore, 92 percent of the nurses willing to 
immediately begin practicing in facilities hardest hit by the shortage 
were turned away from this program.
    The nursing scholarship program offers funds to nursing students 
who, upon graduation, agree to work for at least 2 years in a health 
care facility with a critical shortage of nurses. Preference is given 
to students with the greatest financial need. Like the loan repayment 
program, the nursing scholarship program as been stunted by a lack of 
funding. For fiscal year 2003, HRSA received more than 4,500 
applications for the nursing scholarship. Due to lack of funding, a 
mere 94 scholarships were awarded. Therefore, 98 percent of the nursing 
students willing to work in facilities with a critical shortage of 
nurses were also denied access to the corps.
    The National Nurse Service Corps received $26.7 million in fiscal 
year 2004 appropriations.
Nurse Faculty Loan Program
    This program establishes a loan repayment fund within schools of 
nursing to increase the number of qualified nurse faculty. Nurses may 
pursue a master's or doctoral degree. They must agree to teach at a 
school of nursing in exchange for cancellation of up to 85 percent of 
their educational loans, plus interest, over a 4-year period. Loans may 
cover the costs of tuition, fees, books, laboratory expenses, and other 
reasonable education expenses.
    This program is critical given the worsening shortage of nursing 
faculty. Last year, schools of nursing were forced to turn away tens of 
thousands of qualified applicants due largely to the lack of faculty. 
In fiscal year 2003, HRSA awarded 55 nurse faculty loan repayments.
    The Nurse Faculty Loan Program received $4.9 million in fiscal year 
2004 appropriations.
Nursing Workforce Diversity
    This program provides funds to enhance diversity in nursing 
education and practice. It supports projects to increase nursing 
education opportunities for individuals from disadvantaged 
backgrounds--including racial and ethnic minorities, as well as 
individuals who are economically disadvantaged. Racial and ethnic 
minorities currently comprise more than 25 percent of the nation's 
population and will comprise nearly 40 percent by the year 2020. Only 
12 percent of the RNs in the United States come from diverse 
backgrounds. Increasing the number of RNs from diverse races and 
cultures allows them to address the prevention, treatment, and 
rehabilitation needs of an increasingly diverse population. For fiscal 
year 2003, HRSA received 122 submissions for nursing workforce 
diversity grants. HRSA was only able to fund 20.
    Nursing Workforce Diversity received $16.4 million in fiscal year 
2004 appropriations.
Advanced Nurse Education
    Advanced practice registered nurses (APRNs) are registered nurses 
(RNs) who have attained advanced expertise in the clinical management 
of health conditions. Typically, an APRN holds a master's degree with 
advanced didactic and clinical preparation beyond that of the RN. Most 
have practice experience as RNs prior to entering graduate school. 
Practice areas include, but are not limited to: anesthesiology, family 
medicine, gerontology, pediatrics, mental health, midwifery, 
neonatology, and women's & adult health. Title VIII grants have 
supported the development of virtually all initial state and regional 
outreach models using distance learning methodologies to provide 
advanced study opportunities for nurses in rural and remote areas.
    These grants also provide traineeships for masters and doctoral 
students. Title VIII funds more than 60 percent of U.S. nurse 
practitioner (NP) education programs and assists 83 percent of nurse 
midwifery programs. Over 45 percent of advanced nursing graduates go on 
to practice in medically underserved communities, and in areas with 
large Medicaid populations. Many provide care to minority or 
disadvantaged patients. In fiscal year 2003, HRSA funded 35 advanced 
education nursing grants, 335 advanced education nursing traineeships, 
and 69 nurse anesthetist traineeships.
    Advanced Education Nursing received $58.6 million in fiscal year 
2004 appropriations.
Comprehensive Geriatric Education Grants
    This authority awards grants to train and educate nurses in 
providing health care to the elderly. Funds are used to train 
individuals who provide direct care for the elderly, to develop and 
disseminate geriatric nursing curriculum, to train faculty members in 
geriatrics, and to provide continuing education to nurses who provide 
geriatric care. The growing number of elderly Americans and the 
impending health care needs of the baby boom generation make this 
program critically important. In fiscal year 2003, HRSA received 92 
applications for the comprehensive geriatric training program, 17 
grants were funded.
    Comprehensive Geriatric Education Grants received $3.5 million in 
fiscal year 2004 appropriations.
             national institute of nursing research (ninr)
    The Tri-Council also urges the Subcommittee to increase funding for 
the NINR, one of the institutes at the National Institutes of Health 
(NIH). Nursing research is an integral part of the effectiveness of 
nursing care. Advances in nursing care arising from nursing and other 
biomedical research improves the quality of patient care and has shown 
excellent progress in reducing health care costs. Research programs 
supported by the NINR address a number of critical public health and 
patient care questions. The research is driven by real and immediate 
problems encountered by patients and families. Study results offer the 
clear prospect of improving health, reducing morbidity and mortality, 
and lowering costs and demand for health care.
    Recent studies have focused on the effects of hospital 
restructuring, such as changes in nurse staffing, on patient care; the 
incidence and risk factors for uterine rupture in pregnancies following 
cesarean section; and the means to help family caregivers provide high-
quality long, term care for loved ones with chronic health care needs. 
In addition, NINR is leading the NIH research on end-of-life and 
palliative care. The NINR is the second-lowest funded institute at NIH 
and provides vital health care research for the nursing community. The 
Tri-Council recommends increasing funding for the NINR in fiscal year 
2005.
                               conclusion
    While the Tri-Council is encouraged by a recent resurgence of 
interest in the nursing profession, we are concerned by the fact that 
Title VIII funding levels have not been sufficient to assist qualified 
students enter the nursing profession. The nursing shortage will 
continue to worsen if significant investments are not made in nursing 
workforce development programs. Recent efforts have shown that 
aggressive and innovative recruitment efforts can help avert the 
impending nursing shortage--if they are adequately funded.
    Thirty one years ago, this committee invested $153.6 million in the 
fiscal year 1974 programs of Title VIII. Inflated to today's dollars, 
this long-ago appropriation would equal $574 million (more than four 
times the fiscal year 2004 appropriation). Today's shortage is more 
dire and systemic than that of the 1970's. The Tri-Council asks you to 
meet today's shortage with a relatively modest investment of $205 
million in Title VIII programs. Additionally, an investment in the NINR 
will help assure that these nurses are equipped with the information 
needed to provide the best care possible.
                                 ______
                                 
   Prepared Statement of the National Area Health Education Centers 
                              Organization
              summary of fiscal year 2005 recommendations
  --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 2005.
  --Restore funding for Area Health Education Centers (AHECs) to fiscal 
        year 2003 level of $33.1 million.
  --Restore funding for Health Education Training Centers (HETCs) to 
        fiscal year 2003 level of $4.3 million.
    Mr. Chairman, and members of the subcommittee, I am pleased to 
present this testimony on behalf of the National AHEC Organization 
(NAO).
    By way of brief introduction, my name is Linda Kanzleiter. I am an 
Assistant Professor at the Pennsylvania State University College of 
Medicine and the Associate Director for the dual state Pennsylvania-
Delaware Area Health Education Center Program (PA-DEL AHEC).
    As a member of NAO, the professional organization representing the 
national network of Area Health Education Center Programs (AHECs) and 
Health Education Center Programs (HETCs), I come to you today to 
demonstrate the AHEC/HETC network as a well-established national system 
of community and academic partnerships that increases access to quality 
health care services for our nation, especially the growing number of 
uninsured and underinsured populations by improving the supply and 
distribution of our health professions workforce.
    Three essential strategies were developed: the Neighborhood Health 
Centers, later to be named Community Health Centers (1964); the 
National Health Service Corps (NHSC) established in 1970; and the 
Carnegie Commissions Report establishing the AHEC program (1970) and 
HETC program, established for Border and non-border areas (1989). The 
three programs were created in different acts and at different times, 
but were brought together within the Public Health Service within a 3-
year period.
    The Community Health Centers are dedicated to providing 
preventative and ambulatory health care to the most uninsured and 
underinsured populations by placing point-of-service facilities in 
these areas; and the NHSC is committed to placing health professionals 
to the areas which have the most difficult time recruiting and 
retaining health professionals. However, it is the AHEC & HETC 
organization that recruits, trains and retains a health professions 
workforce committed to working with the underserved. This goal is 
accomplished through bridging the resources of academia to communities.
                the national ahec and hetc organization
    The effectiveness of the AHEC & HETC organization rests with its 
community and academic leadership, collaborative practices and 
committed partnerships of numerous community-based organizations 
representing 48 AHEC & HETC programs, which direct 180 centers housed 
in 43 states.
    Fundamental to the health care infrastructure of the nation is the 
recruitment and retention of a qualified health professions workforce. 
The strategic functions of the AHEC & HETC programs is to facilitate 
the recruitment and retention of the current and future health care 
professions workforce as a means to increase access to health care 
services, and to provide a vehicle to access community-based and 
academic-based health professionals integral to the promotion, 
development, dissemination and management of public and community 
health issues. Claude Earl Fox, former Administrator of HRSA, said it 
so well: ``AHEC programs are a catalyst in both the communities they 
bridge--spurring the academic enterprise to attend to the needs of the 
underserved people--and sparking the community of people served to 
involve themselves in the training of health professionals. This is a 
necessary first step in addressing the health needs of any community.''
    The strength of the national AHEC & HETC organization is their 
cultural diversity and scope of work. The key functions of the AHEC & 
HETC network rests with access and building capacity, which:
  --Creates community-based education and training networks that are 
        developed through linking health professionals and their 
        practices in underserved areas with academic centers and 
        programs to create clinical training experiences for primary 
        care residents, medical students, dental medicine students, 
        nurse practitioners, physician assistants, nurses and other 
        allied health students.
  --Recruits practitioners from the incumbent health professions 
        workforce to medically underserved communities through 
        established recruitment programs and special placement 
        opportunities. Special re-entry programs offered to retrain 
        nurses and other health careers for return to the workforce, 
        and job re-training offered to adult learners interested in 
        developing a career ladder or career change.
  --Retains practitioners working with disenfranchised populations and 
        medically underserved communities through innovative and 
        traditional continuing medical education programs, building 
        linkages between the community practitioners and academic 
        centers, providing telemedicine initiatives and self directed 
        educational modules to maintain knowledge and skills of health 
        professionals, and fostering telemedicine programs for clinical 
        consultation in some areas.
  --Prepares interested primary and secondary students from rural, 
        urban and cultural diverse communities for college and/or 
        career programs in the health professions through academic 
        readiness programs. With a cultural and ethnic diversity 
        blending the nation, emphasis is placed on preparing under-
        represented minority students into the health careers through 
        science, math, and English preparatory programs.
  --Retains the commitment of high school students, medical students, 
        health professions students and residents through the pipeline 
        of health professions education and training through selective 
        mentoring, shadowing and special interest programs.
  --Builds capacity within the health care community to address 
        community and public health issues such as bioterrorism, 
        Healthy People 2010 objectives.
                         the pa-de ahec program
    The PA-DE AHEC Program is celebrating its 10th Anniversary this 
year. Although Delaware is new to the Commonwealth's and national AHEC 
organization, the leadership of the Delaware region brings an in-depth 
understanding of its state's health professions needs and a commitment 
to the mission of the national organization and Pennsylvania AHEC 
program.
    The PA-DE AHEC Program houses an innovative dual state system that 
integrates and bridges academic centers with communities to strengthen 
and increase access:
  --To health care services, especially in underserved communities,
  --To communities and health care personnel integral to the public 
        health infrastructure,
  --To the academic and community-based health professions workforce,
  --To the vital educational resources required to maintain the skills 
        and knowledge of those vested with safe-guarding the health of 
        Pennsylvania and Delaware,
  --To the primary and secondary educational systems fostering 
        interests in health careers, especially for cultural and 
        ethically diverse schools students,
  --To the medical, dental and mental health practice communities 
        facilitating and responding to community and public concerns.
                      the pa-de ahec organization
    The PA-DE AHEC Program has developed a dual state infrastructure 
that includes: the University of Pittsburgh Schools of Medicine, 
Nursing, Dentistry, Pharmacy and Public Health; the Pennsylvania State 
University College of Medicine, School of Nursing and Agromedicine 
Program; the Philadelphia College of Osteopathic Medicine; Temple 
University Schools of Medicine, Pharmacy, Nursing and Dentistry; Thomas 
Jefferson University, Jefferson Medical College and College of Nursing; 
Drexel University School of Medicine, University of Pennsylvania School 
of Dental Medicine and Midwifery Program, and Delaware University, 
School of Nursing.
    Our medical education and training infrastructure also includes 
over 90 health science institutions, and a community-based teaching 
network of over 1,000 physicians and health professionals representing 
12 medical, oral and public health disciplines, and numerous community 
organizations inclusive of Pennsylvania's 67 counties and Delaware's 
three counties.
About Pennsylvania and Delaware
    Pennsylvania and Delaware, like the rest of the nation, share the 
problem of mal-distribution of health care providers and limited access 
to essential health care services. Pennsylvania houses a population of 
over 12 million people within a geographic range of 46,000 square 
miles, and supports one of the largest aging populations in the nation. 
Traditional market forces have not been very effective in making health 
care available to rural and inner city residents. It is estimated that 
21 percent or greater have no health care coverage and a significant 
proportion remain underinsured. Primary care access and provider 
shortage in the state have resulted in areas of 55 of 67 counties being 
designated as Health Professional Shortage Areas (HPSA), Medically 
Underserved Areas (MUA) or both. Dental Health Professions Shortage 
Areas and Mental Health Shortage Areas are representative of an 
increased number of counties without oral and mental health services.
Increasing Access to Health Care
    The PA-DE AHEC has facilitated placement of over 31,000 students, 
representing 78,500 clinical training weeks. These students are 
primarily recruited to train in underserved communities. Working with 
51 community health centers, federally qualified centers, and NHSC 
designated centers, the PA-DE AHEC fosters clinical training 
experiences that teach students the rewards and challenges of working 
with at-risk populations and the special knowledge and skills required 
to provide quality health care in communities with limited resources.
              health professions recruitment and retention
    Promoting the NHSC and State Loan Repayment and Scholarship 
programs are important first steps to introducing providers to 
Pennsylvania and Delaware. Developing and implementing math, science 
and English programs for students in disadvantaged school districts 
facilitates entrance into the health careers through a Grow Your Own 
approach to the health professions crisis. Special initiatives are also 
promoted in areas of nursing with re-entry programs (refresher courses 
for licensed nurses not practicing for five or more years), retraining 
programs that offer promotional and career advancement, and remedial 
programs that are targeted to the special adult learner seeking 
admission to the health careers. All AHEC regions look to facilitate 
nursing programs focused on recruitment, re-entry, retraining and 
retention initiatives.
    In addition, the PA-DE AHEC Program provides self-directed study 
programs as way for practitioners to access continuing professional 
education programs in respect to the increasing professional and 
practice demands of their office and community. For example the most 
recent program, PA-DE AHEC is offering a self-directed learning program 
on the screening, diagnosing and treatment of endocrine disease, 
psychiatric disorders and co-morbidity. Web-based learning in areas of 
tobacco cessation and tobacco cessation pharmacopeias are also venues 
of self directed programs. In addition, statewide satellite broadcasts 
with capabilities to over 520 down link sites within the system add 
another venue for continuing professional education.
                      public health infrastructure
    Responding to the national, state and local needs of preparedness 
teams and public health workers, the PA-DE AHEC Program is an integral 
partner to the emerging public health infrastructure. The PA-DE AHEC 
provides, through its academic and community partnerships, program 
development as well as critical access to communities, at-risk 
populations and the health professions workforce for emerging public 
health issues, such as bioterrorism preparedness training to health 
professionals, especially to agricultural and migrant communities. In 
addition we work with public health officials in areas of health 
promotion and disease prevention programs, which focus on minority 
health disparities and cultural sensitivity training for safety net 
providers. Many community and public health programs are also delivered 
to respond to the Healthy People 2010 objectives.
                       critical workforce issues
    Regardless of the 30 years of well-intended efforts by countless 
health professionals and policy makers, the nation's health care 
``safety net'' program is not able to meet the growing health care 
needs of the country's uninsured and underinsured populations. Young 
adults no longer see clinical nursing as an acceptable career path, In 
fact, other health professions are at-risk; pharmacy is another 
example. Rural hospitals and health systems are also closing 
frequently; which adds another dimension to limiting access to health 
care services. The impact of hospital and system closures contributes 
to the unemployment rate in local communities and decreases the 
economic base. This fractured health care system looks to address the 
health care needs of an aging nation, which requires much of its health 
professions workforce.
    Pennsylvania and Delaware are faced with similar concerns. Only 13 
percent of Pennsylvania primary care physician workforce practice in 
rural areas. Furthermore, 25 percent of primary care physicians in the 
Commonwealth are 55 or older indicating a large number of potential 
retirees. Equally troublesome is documentation indicating that 20 
percent will leave primary care practice in the state because of lack 
of practice coverage, reimbursement issues, lack of technology in rural 
areas, and professional isolation. Time is of the essence, and the 
important message is that AHEC is the foundation for recruiting, 
retaining and distributing a health professions workforce for the 
nation.
    Mr. Chairman, I respectfully ask the Subcommittee to support our 
recommendation to increase funding for the Health Professions and 
Nursing Education programs under Title VII and Title VIII of the Public 
Health Service Act to a minimum of $550 million for fiscal year 2005. 
Our recommendations are consistent with those of the Health Professions 
and Nursing Coalition.
                                 ______
                                 
         Prepared Statement of the National League for Nursing
    The National League for Nursing (NLN)--representing more than 1,300 
schools of nursing, 14,000 faculty and individual members, and 18 
constituent leagues--appreciates the Subcommittee's past support for 
nursing education and your continued recognition of the important role 
nurses play in the delivery of our nation's health care services. NLN 
is concerned, however, that the advancements made by Congress to help 
alleviate the nursing shortage will be lost during the fiscal year 2005 
appropriations process unless additional resources are expended. We 
urge your continued support for Title VIII--Nursing Workforce 
Development Programs by ensuring that these programs are funded at a 
minimum level of $205 million for fiscal year 2005.
    Today's nursing shortage is very real and very different from any 
experienced in the past. The new nursing shortage is evidenced by an 
aging workforce; acute nursing shortages in certain geographic areas; 
and a shortage of nurses and nurse educators adequately prepared to 
meet patient need in a changing health care environment. As a result, 
the supply of appropriately prepared nurses and nursing faculty is 
inadequate to meet the needs of a diverse population. This shortfall 
will grow more serious over the next 5 years.
    Congress did an admirable job of passing the Nurse Reinvestment Act 
in 2002. The new monies used to fund loans and scholarships are 
appreciated. However, it has become abundantly clear that significantly 
more funding is required to meet the existing need. In fiscal year 
2003, for example, only 55 nurse faculty loans were awarded. Yet last 
year, schools of nursing were forced to turn away 29,284 qualified 
nursing students because of a lack of prepared nurse educators to teach 
them. This number is significantly greater than the 18,476 students who 
were turned away in 2002.
    Schools of nursing are suffering from a continuing and growing 
shortage of faculty, which prevents these institutions from admitting 
many qualified students who are applying to their programs. NLN's 2002 
Faculty Survey concludes that not enough qualified nurse educators 
exist to teach the number of nurses needed to ameliorate the nursing 
shortage. According to the Survey, this situation is not expected to 
improve in the near future, since an adequate number of nurse educators 
are currently not in the education pipeline.
    The NLN Survey found three trends impacting the future of nursing 
education over the next decade:
The aging of the nurse faculty population
    An average of 1.3 full-time faculty members per program left their 
positions in nursing education in 2002. About half the Survey 
respondents had at least one unfilled budgeted full-time faculty 
position and some have as many as 15 such positions.
    Approximately 1,800 full-time faculty members leave their positions 
each year. About 10,000 master's level nurses graduate per year, 15 
percent of whom would have to go into teaching just to maintain the 
status quo. Since this is highly unlikely, the gap between unfilled 
positions and the candidate pool will widen significantly.
The increasing number of part-time faculty
    The number of part-time faculty has increased since 1996--nearly 17 
percent in baccalaureate programs and 14 percent in associate degree 
programs. Approximately 23 percent of the estimated number of faculty 
FTEs is now provided by part-time faculty.
    Part time employees are often not an integral part of the design, 
implementation, and evaluation of the overall nursing education 
program. Many may hold other positions that often limit their 
availability to students. Further, many part-time faculty have not been 
prepared for the faculty role.
The large number of nursing faculty who are not prepared at the 
        doctoral level
    Approximately half the full-time faculty in baccalaureate and 
higher degree programs holds a doctoral degree. In associate degree 
programs, doctorally-prepared faculty account for only 6.6 percent and 
the number is slightly more than 5 percent in diploma programs. Only 
350 to 400 nursing students receive doctoral degrees each year and the 
pool of doctorally-prepared candidates for full-time nursing 
professorships is very limited.
    Educators without doctoral degrees may lack credibility within a 
university setting and have limited opportunities to assume leadership 
positions. Institutions with low numbers of doctorally-prepared 
educators may be less likely to get funds to support research or 
educational innovations.
    As important as educational incentives for future practicing nurses 
are the scholarships for doctoral students, who will instruct the next 
generation of nurses. Please do not allow us to lose ground in the 
fight against the nursing shortage--fund Title VIII nursing programs at 
a level commensurate with the severity of the health care crisis facing 
the nation today.
    Your support will help ensure that nurses exist in the future who 
are prepared and qualified to take care of you, your family, and all 
those in this country who will need our care. If you have any questions 
about NLN's position or we can be of further assistance to you, please 
feel free to contact Kathleen Ream, NLN Manager of Government Affairs, 
at 703-241-3974.
                                 ______
                                 
 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 2005 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 1/200th (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 state budget shortfalls in many states 
and the resulting pressures for significant reductions in state 
Medicaid programs. Because children's hospitals devote such a 
substantial portion of their care to children of low-income families, 
they are especially affected by cutbacks in state Medicaid programs.
    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, $290 million in fiscal year 2003, and $303 million in fiscal year 
2004. 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 
allocates the annual appropriation in bi-weekly periodic payments to 
eligible independent children's hospitals.
                        fiscal year 2005 request
    N.A.C.H. respectfully requests that the Subcommittee continue 
equitable GME funding for the independent children's hospitals by 
providing $303 million for the program in fiscal year 2005--the level 
of funding requested by President Bush and equal to the fiscal year 
2004 appropriation enacted in January 2004. We are grateful for the 
administration's recognition of the significance of the CHGME program.
    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 and 
fiscal year 2004. Now, N.A.C.H. asks Congress to maintain this progress 
by enactment of the President's request.
    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 recommending an fiscal year 2005 appropriation of $303 million 
for CHGME, the Bush administration specifically cited the both the 
program's clear purpose and its impact on the financial health of 
children's hospitals.
    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 Community Medical Centers, Fresno, CA
    With over 43 million people in the United States lacking health 
insurance, the situation is reaching a crisis. National polls of 
Americans have ranked affordable health care as a leading concern 
behind the economy and jobs, and national security and terrorism. The 
issue is of greater concern for those of us who live in the Central San 
Joaquin Valley in California.
    In the San Joaquin Valley, we face even greater challenges with the 
delivery of health care. While the national average for uninsured 
hovers around 15 percent, the Central San Joaquin Valleys sees a figure 
closer to 20 percent. As the region poises itself to address the 
chronic double-digit unemployment (from 14 percent-17 percent) and an 
equally high rate of poverty (20 percent-30 percent) through aggressive 
economic development and work force training initiatives, we cannot 
ignore the need for accessible health care for the uninsured.
    The health statistics also point to the need to develop a pro-
active and aggressive approach to the situation. They are:
  --The third highest asthma mortality rate in the nation
  --The highest incidence of diabetes among the Hispanic population
  --The highest rates of teen pregnancy in the state
  --The lowest immunization rates in the nation (62 percent at age 2 
        vs. 79 percent nationally)
  --Late or no prenatal care for pregnant women
    Community Medical Centers is a $574 million locally owned, not-for-
profit health care corporation based in Fresno, California and is 
committed to improving accessibility to health care in the area. As a 
result of a landmark decision by the Fresno County Board of Supervisors 
in 1996, the County of Fresno and Community Medical Centers embarked 
upon a 30-year partnership obligating Community to provide care to the 
uninsured and underinsured residents of Fresno County.
    Community, along with other health care providers such as Sequoia 
Community Health Foundation, a Federally Qualified Health Center, has 
been committed to developing a network of outpatient clinics throughout 
the county with a hub facility to be located on the campus of the 
Regional Medical Center in downtown Fresno. This outpatient clinic is 
to be adjacent to the UCSF Fresno Medical Education and Research 
Center, which is currently under construction, and in-patient hospital 
services as well. It is only by enhancing access to health care through 
multiple primary care sites can we begin to address the many health 
care needs of a burgeoning population, both young and old.
    This Outpatient Care Clinic will serve as a hub to a network of 
clinics throughout the County of Fresno housing primary and specialty 
care including a children's clinic, a women's clinic focusing on 
obstetrical and gynecological needs, asthma treatment and education, 
diabetes treatment and education as well as surgical follow-up.
    We would like to ask for your assistance in securing $1 million in 
funding for the purposes of constructing an outpatient care clinic on 
the campus of the Regional Medical Center in Fresno. We understand that 
this request would require a special earmark under the Health Resources 
Services Administration account in the Labor/Health and Human Services 
appropriations bill. We are also aggressively pursuing funding through 
multiple private foundations to secure the bulk of the funding for this 
$24 million facility. We believe that this facility and a comprehensive 
approach to addressing the need for health care services in our region 
is the best option to improve the quality of life in the Central San 
Joaquin Valley.
                                 ______
                                 
      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 groundbreaking 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 is also a distinguished training institution, which 
serves up to 80 undergraduates, doctoral, and postdoctoral trainees 
annually. These training programs support doctoral and postdoctoral 
scientists with highly competitive research fellowships, and offer 
talented undergraduates an opportunity to work with Museum scientists. 
The Museum's doctoral and post-doctoral training program, dating from 
1908, is the oldest and largest of any such program at a scientific 
museum. The Museum currently has collaborative programs with Yale 
University, Columbia University, Cornell University, New York 
University, and CUNY. The training encompasses the entire range of 
science covered in the Museum's mission, which includes astrophysics, 
earth sciences, evolutionary biology, zoology, paleontology, 
comparative genomics, biodiversity sciences, and anthropology.
    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 biological 
collections are many spectacular individual collections, including the 
world's most comprehensive collections of dinosaurs, fossil mammals, 
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.
    The Museum interprets the work of its scientists, highlights its 
collections, addresses current scientific and cultural issues, and 
promotes public understanding of science through its renowned permanent 
and temporary exhibits (such as the Genomic Revolution in 2001) as well 
as its comprehensive education programs. These programs attract more 
than 400,000 students and teachers and more than 5,000 educators for 
professional development opportunities. The Museum also takes its 
resources beyond its walls through the National Center for Science 
Literacy, Education, and Technology, launched in 1997 in partnership 
with NASA.
                     comparative genomics resources
    The American Museum shares with DHHS 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; a partnership 
between the Museum and DHHS/HRSA would further mutual goals for 
improving the nation's health and welfare through research and training 
in genomic science.
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 biology 
research and training program and leads 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 11 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
    The Museum offers unique resources in support of its molecular 
program. These include 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 1 million specimens, it 
will be the largest super-cold tissue collection of its kind. In the 
past 3 years, 22,000 specimens not available at any other institute or 
facility have already been 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 700-processor computing 
cluster--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.
         comparative genomics research and training initiative
    Building on these unique strengths in comparative genomics, and in 
concert with the health, education, and training goals of DHHS, 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.
    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.
    The Museum is also successfully promoting public understanding of 
genomic science. The landmark exhibition, The Genomic Revolution, seen 
by approximately 500,000 visitors in New York 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. In June 2002, the Museum hosted an international conference 
examining current knowledge of life's history, Assembling the Tree of 
Life: Science, Relevance, and Challenges.
    As it moves forward, the Institute, working in cooperation with New 
York's outstanding biomedical research and educational institutions, is 
focusing on molecular and microbial systematics, on constructing large 
genomic databases, and on expanding our understanding of the evolution 
of life on earth and the evolution of critical organismal form and 
function through analysis of the genomes of selected microbes and other 
non-human organisms. Development of Institute activities entails 
expanding expertise in microbial systematics and the molecular 
laboratory program that now trains dozens of graduate students every 
year; utilizing the latest sequencing technologies; employing parallel 
computing applications that allow scientists to solve combinatorially 
complex problems involving large real world datasets; and continuing to 
advance public understanding of genomic science through educational 
materials, scientific conferences, and exhibits.
    So as to contribute its unique capacities to the nation's genomics 
research and training efforts, the Museum seeks to partner with DHHS/
HRSA in a facilities/instrumentation initiative. We request $1 million 
to equip our National Research and Training Laboratory for Comparative 
and Microbial Genomics, a state-of-the-art molecular laboratory. When 
equipped, the expanded facility will provide up-to-date instrumentation 
for graduate and postdoctoral trainees as well as for senior 
scientists. The Museum will contribute its participatory share to this 
project with funds from nonfederal as well as federal sources.
                                 ______
                                 
   Prepared Statement of the American Academy of Physician Assistants
    On behalf of the more than 51,000 clinically practicing physician 
assistants in the United States, the American Academy of Physician 
Assistants (AAPA) is pleased to submit comments on fiscal year 2005 
appropriations for Physician Assistant (PA) education programs that are 
authorized through Title VII of the Public Health Service Act.
    A member of the Health Professions and Nursing Education Coalition 
(HPNEC), the American Academy of Physician Assistants supports the 
HPNEC recommendation to provide at least $550 million to support the 
Titles VII and VIII programs in fiscal year 2005, including $18 million 
to support PA educational programs, as recommended by the Advisory 
Committee on Primary Care Medicine and Dentistry.
    The Academy believes that the recommended increase in funding for 
the Title VII health professions programs is well justified. The 
programs are essential to the development and training of primary 
health care professionals and contribute to the nation's overall 
efforts to increase access to care by promoting health care delivery in 
medically underserved communities.
    The Academy is very concerned with the Administration's proposal to 
eliminate funding for most Title VII programs, including zero funding 
for training in primary care medicine and dentistry. As Members of the 
Subcommittee are aware, these programs are designed to help meet the 
health care delivery needs of the nation's Health Professional Shortage 
Areas (HPSAs). By definition, the nation's more than 3,800 HPSAs 
experience shortages in the primary care workforce that the market 
alone can't address. We wish to thank the members of this subcommittee 
for your historical role in supporting funding for the health 
professions programs, and we hope that we can count on your support for 
these important programs in fiscal year 2005.
             overview of physician assistant (pa) education
    PA programs provide students with a primary care education that 
prepares them to practice medicine with physician supervision. 
Physician assistant programs are located at schools of medicine or 
health sciences, universities, teaching hospitals, and the Armed 
Services. All PA educational programs are intensive education programs 
that are accredited by the Accreditation Review Commission on Education 
for the Physician Assistant.
    The typical PA program consists of 111 weeks of instruction. The 
first phase of the program consists of intensive classroom and 
laboratory study, providing students with an in-depth understanding of 
the medical sciences. More than 400 hours in classroom and laboratory 
instruction are devoted to the basic sciences, with over 70 hours in 
pharmacology, more than 149 hours in behavioral sciences, and more than 
535 hours of clinical medicine.
    The second year of PA education consists of clinical rotations. On 
average, students devote more than 2,000 hours or 50-55 weeks to 
clinical education, divided between primary care medicine and various 
specialties, including family medicine, internal medicine, pediatrics, 
obstetrics and gynecology, surgery and surgical specialties, internal 
medicine subspecialties, emergency medicine, and psychiatry. During 
clinical rotations, PA students work directly under the supervision of 
physician preceptors, participating in the full range of patient care 
activities, including patient assessment and diagnosis, development of 
treatment plans, patient education, and counseling.
    Physician assistant education is competency based. After graduation 
from an accredited PA program, the physician assistant must pass a 
national certifying examination jointly developed by the National Board 
of Medical Examiners and the independent National Commission on 
Certification of Physician Assistants. To maintain certification, PAs 
must log 100 continuing medical education credits over a 2-year cycle 
and reregister every 2 years. Also to maintain certification, PAs must 
take a recertification exam every 6 years.
                      physician assistant practice
    Physician assistants are licensed health care professionals 
educated to practice medicine as delegated by and with the supervision 
of a physician. In all states, physicians may delegate to PAs those 
medical duties that are within the physician's scope of practice and 
the PA's training and experience, and are allowed by law. Forty-seven 
states, the District of Columbia, and Guam authorize physicians to 
delegate prescriptive privileges to the PAs they supervise.
    PAs are located in almost all health care settings and in every 
medical and surgical specialty. Nineteen percent of all PAs practice in 
non-metropolitan areas where they may be the only full-time providers 
of care (state laws stipulate the conditions for remote supervision by 
a physician). Approximately 41 percent of PAs work in urban and inner 
city areas. Approximately 44 percent of PAs are in primary care. Nearly 
one-quarter practice in surgical specialties. Roughly 80 percent of PAs 
practice in outpatient settings. In 2003, an estimated 192 million 
patient visits were made to PAs and approximately 236 million 
medications were prescribed or recommended by PAs.
  critical role of the title vii, public health service act, programs
    A growing number of Americans lack access to primary care, either 
because they are uninsured, underinsured, or they live in a community 
with an inadequate supply or distribution of providers. The growth in 
the uninsured U.S. population increased from approximately 32 million 
in the early 1990s to nearly 44 million today. Simultaneously, the 
number of medically underserved communities continues to rise, from 
1,949 in 1986 to more than 3,800 today.
    The role of the Title VII programs is to alleviate these problems 
by supporting access to quality, affordable, and cost-effective care in 
areas of our country that are most in need of health care services, 
specifically rural and urban underserved communities. This is 
accomplished through the support of educational programs that train 
more health professionals in fields experiencing shortages, improve the 
geographic distribution of health professionals, and increase access to 
care in underserved communities.
    The Title VII programs are the only federal education programs that 
are designed to address the supply and distribution imbalances in the 
health professions. Since the establishment of Medicare, the costs of 
physician residencies, nurses and some allied health professions 
training has been paid through Graduate Medical Education (GME) 
funding. However, GME has never been available to support PA education. 
More importantly, GME was not intended to generate a supply of 
providers who are willing to work in the nation's medically underserved 
communities. That is the purpose of the Title VII Public Health Service 
Act Programs, which support such initiatives as loans and scholarships 
for disadvantaged students, scholarships for students with exceptional 
financial need, centers of excellence to recruit and train minority and 
disadvantaged students, and interdisciplinary initiatives in geriatric 
care and rural health care.
    Furthermore, now that there is compelling evidence that race and 
ethnicity correlate with persistent, and often increasing, health 
disparities among U.S. populations, increasing the diversity of health 
care professionals is essential. Title VII programs are unique in that 
they seek to recruit providers from a variety of backgrounds. This is 
particularly important, as studies have found that those from 
disadvantaged regions of the country are 3 to 5 times more likely to 
return to those underserved areas to provide care versus other areas.
               title vii support of pa education programs
    Targeted federal support for PA education programs is currently 
authorized through section 747 of the Public Health Service Act. The 
program was reauthorized in the 105th Congress through the Health 
Professions Education Partnerships Act of 1998, Public Law 105-392, 
which streamlined and consolidated the federal health professions 
education programs. Support for PA education is now considered within 
the broader context of training in primary care medicine and dentistry.
    Publi Law 105-392 reauthorized awards and grants to schools of 
medicine and osteopathic medicine, as well as colleges and 
universities, to plan, develop, and operate accredited programs for the 
education of physician assistants and faculty, with priority given to 
training individuals from disadvantaged communities. The funds ensure 
that PA students from all backgrounds have continued access to an 
affordable education and encourage PAs, upon graduation, to practice in 
underserved communities. These goals are accomplished by funding PA 
education programs that have a demonstrated track record of: (1) 
placing PA students in health professional shortage areas; (2) exposing 
PA students to medically underserved communities during the clinical 
rotation portion of their training; and (3) recruiting and retaining 
students who are indigenous to communities with unmet health care 
needs.
    The program works. A review of PA graduates from 1990-2002 reveals 
that students graduating from PA programs supported by Title VII are 84 
percent more likely to be from underrepresented minority backgrounds 
and 32 percent more likely to practice in underserved settings, than 
students graduating from PA programs that were not supported by Title 
VII.
    The PA programs' success in recruiting and retaining 
underrepresented minority and disadvantaged students is linked to their 
ability to creatively use Title VII funds to enhance existing 
educational programs. For example, a PA educational program in Iowa 
uses Title VII funds to target recruitment efforts to disadvantaged 
students, providing shadowing and mentoring opportunities for 
prospective students, increasing training in cultural competency, and 
identifying new family medicine preceptors in underserved areas. PA 
programs in Texas use Title VII funds to create new clinical rotation 
sites in rural and underserved areas, including new sites in border 
communities, and to establish non-clinical rural rotations to help 
students understand the challenges faced by rural communities. One 
Texas program uses Title VII funds for the development of web based and 
distant learning technology and methodologies so students can remain at 
clinical practice sites. A PA program in New York, where over 90 
percent of the students are ethnic minorities, uses Title VII funding 
to focus on primary care training for underserved urban populations by 
linking with community health centers, which expands the pool of 
qualified minority role models that engage in clinical teaching, 
mentoring, and preceptorship for PA students. Several other PA programs 
have been able to use Title VII grants to leverage additional resources 
to assist students with the added costs of housing and travel that 
occur during relocation to rural areas for clinical training.
    Without Title VII funding, many of these special PA training 
initiatives would not be possible. Institutional budgets and student 
tuition fees simply do not provide sufficient funding to meet the 
special, unmet needs of medically underserved areas or disadvantaged 
students. Nevertheless, the need is very real, and Title VII is 
critical in meeting it.
     need for increased title vii support for pa education programs
    Increased Title VII support for educating PAs to practice in 
underserved communities is particularly important given the market 
demand for physician assistants. Without the Title VII funding to 
expose students to underserved sites during their training, PA students 
are far more likely to practice in the communities where they were 
raised or the communities in which they attended school. Title VII 
funding is a critical link in addressing the natural geographic 
maldistribution of health care providers by exposing students to 
underserved sites during their training, where they frequently choose 
to practice following graduation. Currently, 36 percent of PAs met 
their first clinical employer through their clinical rotations.
    Changes in the health care marketplace reflect a growing reliance 
on PAs as part of the health care team. Currently, the supply of 
physician assistants is inadequate to meet the needs of society, and 
the demand for PAs is expected to increase. A 1994 report of a 
workgroup of the Council on Graduate Medical Education (COGME), 
``Physician Assistants in the Health Workforce,'' estimated that the 
anticipated medical market demand and the estimated workforce 
requirements for PAs would exceed supply. Additionally, the Bureau of 
Labor Statistics projects that the number of available PA jobs will 
increase 49 percent between 2002 and 2012. Title VII funding has 
provided, and continues to provide, a crucial pipeline of trained PAs 
to underserved areas. One way to assure an adequate supply of physician 
assistants, especially PAs likely to practice in underserved areas, is 
to continue offering financial incentives, such as funding preferences, 
to PA programs that emphasize recruitment and placement of people 
interested in primary health care in medically underserved communities.
    Despite the increased demand for PAs, funding has not 
proportionately increased for the Title VII programs that are designed 
to educate and place physician assistants in underserved communities. 
Nor has the Title VII support for PA education kept pace with increases 
in the cost of educating PAs. A review of PA program budgets from 1984 
through 2002 indicates an average annual increase of 6.5 percent, a 
total increase of 218 percent over the past 18 years; yet, federal 
support has remained relatively static.
              recommendations on fiscal year 2005 funding
    A recent report by the Advisory Committee on Training in Primary 
Care Medicine and Dentistry quotes a study in the Journal of Rural 
Health: ``In 1997, Title VII funded programs increased the rates of 
graduates entering health profession shortage areas (HPSAs), resulting 
in 1,357 providers . . . Doubling the funding of these programs . . . 
could decrease the time for HPSAs elimination to as little as 6 
years.'' The Advisory Committee concluded that ``. . . Title VII 
remains a modest investment, but, as has been demonstrated, one with 
substantial future payoffs in terms of system quality, access to care, 
and a culturally competent system of care for the entire population.''
    The American Academy of Physician Assistants urges members of the 
Appropriations Committee to consider the inter-dependency of all the 
public health agencies and programs when determining funding for fiscal 
year 2005. For instance, while it is important to fund clinical 
research at the National Institutes of Health (NIH) and to have an 
infrastructure at the Centers for Disease Control (CDC) that ensures a 
prompt response to an infectious disease outbreak or bioterrorist 
attack, the good work of both of these agencies will go unrealized if 
the Health Resources and Services Administration (HRSA) is inadequately 
funded. HRSA administers the ``people'' programs, such as Title VII, 
that bring the cutting edge research discovered at NIH to the 
patients--through providers such as PAs who have been educated in Title 
VII-funded programs. Likewise, CDC is heavily dependent upon an 
adequate supply of health care providers to be sure that disease 
outbreaks are reported, tracked, and contained.
    The critically important programs administered by NIH, HRSA, and 
CDC are integral components within the nation's public health 
continuum. One component is not more important than another, and no one 
component can succeed without adequate support from each of the other 
elements.
    Furthermore, while the Academy applauds the Administration's 
proposal to strengthen national security by increasing support for 
health emergency preparedness initiatives, it should not do so at the 
expense of Title VII programs. Training is the key to preparedness, and 
Title VII, section 747, is an ideal mechanism for educating primary 
care providers in public health competencies, facilitating population 
based and community-based skills and training, and increasing the 
alliance between public health and primary care providers. This is 
particularly important for our Nation's most disadvantaged and 
underserved populations, because they are the most vulnerable during 
medical emergencies because of a lack of resources and access to care.
    The Academy respectfully requests that the Title VII and VIII 
health professions programs receive $550 million in funding for fiscal 
year 2005, including $18 million to support PA educational programs, as 
recommended by the Advisory Committee on Primary Care Medicine and 
Dentistry.
    Thank you for the opportunity to present the American Academy of 
Physician Assistants' views on fiscal year 2005 appropriations.
                                 ______
                                 
    Prepared Statement of the National Alliance for the Mentally Ill
    Chairman Specter, Senator Harkin and members of the Subcommittee, I 
am Margaret Stout of Johnson, Iowa. I current serve as President of the 
National Alliance for the Mentally Ill (NAMI) and Executive Director of 
NAMI's statewide Iowa affiliate. I am pleased to offer NAMI's view on 
the Subcommittee's fiscal year 2005 bill.
    NAMI is the nation's largest grassroots advocacy organization, 
220,000 members representing persons with serious brain disorders and 
their families. Through our 1,200 chapters and affiliates in all 50 
states, we support education, outreach, advocacy and research on behalf 
of persons with serious brain disorders such as schizophrenia, manic 
depressive illness, major depression, severe anxiety disorders and 
major mental illnesses affecting children.
    Mr. Chairman, for too long severe mental illness has been shrouded 
in stigma and discrimination. These illnesses have been misunderstood, 
feared, hidden, and often ignored by science. Only in the last decade 
have we seen the first real hope for people with these brain disorders 
through pioneering research that has uncovered both a biological basis 
for these brain disorders and treatments that work.
    The cost of mental illness to our nation is enormous. President 
Bush's White House Mental Health Commission--which completed its work 
in 2003--found that the direct treatment cost exceeds $71 billion 
annually. This does not include the $79 billion in estimated indirect 
costs of benefits and social services (including 35 percent of SSI 
benefits and 28 percent of SSDI benefits). These direct and indirect 
costs do not measure the substantial and growing burden that is imposed 
on ``default'' systems that are too often responsible for serving 
children and adults with mental illness who lack access to treatment. 
These costs fall most heavily on the criminal justice and corrections 
systems, emergency rooms, schools, families and homeless shelters. 
Moreover, these costs are not only financial, but also human in terms 
of lost productivity, lives lost to suicide and broken families. 
Investment in mental illness research and services are--in NAMI's 
view--the highest priority for our nation and this Subcommittee.
             funding for services programs at samhsa & cmhs
    The Center for Mental Health Services (CMHS)--part of the Substance 
Abuse and Mental Health Services Administration (SAMHSA)--is the 
principal federal agency engaged in support for state and local public 
mental health systems. Through its programs CMHS provides flexible 
funding for the states and conducts service demonstrations to help 
states move toward adoption of evidence-based practices. Funding for 
all SAMHSA and CMHS programs is part of the Fiscal Year 2005 Labor-HHS-
Education Appropriations bill that Congress will soon consider.
CMHS Programs and the Crisis Confronting the Public Mental Health 
        System
    During the recent economic downturn and resulting crisis the state 
budgets are facing, we are witnessing widening of gaps in the public 
mental illness treatment system in many states. This is resulting in 
unprecedented cuts being enacted by states in both direct spending on 
mental illness treatment and supportive services, and in Medicaid 
funding of such services. Deep cuts to front-line clinics and providers 
in the public mental health system, curbs on access to newer more 
effective medications and closure of acute care beds in the community 
are just a few of the misguided strategies that states are employing to 
close their widening budget gaps. The consequences of these emerging 
cracks in the service system are readily apparent, not just to NAMI's 
consumer and family membership, but also to the public: increased risk 
of suicide, the growing number of chronic homeless adults and the 
growing trend of ``criminalization'' of mental illness and the stress 
it is placing on state and local jails and prisons.
The Need to Focus on Recovery-Oriented Evidence-Based Practices
    As states continue to cut funding for mental illness treatment and 
supportive services, CMHS programs are becoming an increasingly 
important source of funding for the states. First and foremost, states 
should be encouraged to use their CMHS Block Grant funds to prevent 
further cuts in services for children and adults with severe mental 
illnesses. NAMI also supports targeting of CMHS dollars toward 
investment in evidence-based, outreach-oriented service delivery models 
for persons with severe mental illness in the community. The need to 
focus limited resources on evidence-based models (such as Programs of 
Assertive Community Treatment (PACT) and integrated treatment for co-
occurring disorders) was recommended in 2003 by the President's ``New 
Freedom Initiative'' Mental Health Commission Report. This landmark 
report called for a reform of the public mental health system to 
eliminate system fragmentation and better reflect the priorities of 
recovery and community integration.
NAMI Supports the Bush Administration's Request for a ``Mental Health 
        System Transformation'' Initiative
    The President's fiscal year 2005 budget includes a request for $44 
million at CMHS for a new state incentive grant program for ``Mental 
Health System Transformation.'' This initiative is intended to help 
states follow through on the July 2003 recommendations in the White 
House ``New Freedom Initiative'' Mental Health Commission report. Under 
the proposal, funds would be allocated to states on a competitive basis 
to support the development of comprehensive state mental health plans 
to reduce system fragmentation and increase access to evidence-based 
services that promote recovery from mental illnesses. States would be 
required to use funds to develop plans that cut across multiple systems 
such as housing, criminal justice, child welfare, employment and 
education. In subsequent years, up to 85 percent of funds could be used 
to support community-based programs, with the remaining 15 percent 
available for state planning and coordination. NAMI strongly supports 
this proposal as critical to the effort to reform our nation's 
fragmented and underfunded public mental health system and bridge the 
gap between scientific advances and practice.
NAMI Supports the ``Samaritan'' and ``ELHSI'' Initiatives to End 
        Chronic Homelessness
    The President's fiscal year 2005 budget proposes $70 million to 
continue the ``Samaritan Initiative'' to end chronic homelessness over 
the next decade, with funding spread across SAMHSA, HUD and the VA. In 
addition, the Bush Administration is seeking a $5 million increase for 
the Projects for Assistance in Transition from Homelessness (PATH) 
program--boosting fiscal year 2005 funding to $55 million. PATH is a 
formula grant program to the states that funds outreach and engagement 
services for homeless individuals with severe mental illnesses. CMHS 
estimates that this increase in the PATH program will result in 154,000 
homeless individuals with severe mental illnesses being served by state 
and local PATH grantees. NAMI also urges additional funding in fiscal 
year 2005 for the PATH program to address inequities in the program's 
interstate funding formula that have the allocation for many smaller 
rural states frozen since the mid-1990s.
    NAMI urges full funding of the ``Samaritan Initiative'' in fiscal 
year 2005 and the proposed increase for PATH. Individuals with severe 
mental illnesses and co-occurring substance abuse disorders make up the 
largest share of the more than 150,000 people who experience chronic 
homelessness--those who stay homeless for a year or more. In addition 
to supporting the Administration's Samaritan Initiative and the 
recommended increases for PATH, NAMI also supports funding for the 
Ending Long-Term Homeless Services Initiative (ELHSI) program at SAMHSA 
to assist states and localities in funding services for new permanent 
supportive housing being developed through HUD's McKinney-Vento 
program. Funding at SAMHSA for Samaritan and ELHSI is critical to 
producing and sustaining 150,000 units of permanent supportive housing 
that will all but eliminate chronic homelessness. Ending chronic 
homelessness through permanent supportive housing will pay for itself, 
as communities save hundreds of millions of dollars in that communities 
are relieved of the costs related to keeping people homeless--including 
those associated with shelters, emergency rooms and jails.
Funding for CMHS Programs in the President's fiscal year 2005 Budget
    In addition to the initiatives noted above, NAMI also supports 
ongoing activities at CMHS:
  --Mental Health Block Grant.--CMHS's largest program, the Mental 
        Health Block Grant (state formula grant program), would receive 
        a $2 million increase under the President's fiscal year 2005 
        budget proposal (boosting funding to $436 million).
  --Children's Mental Health program at CMHS.--The President is 
        requesting a $4 million increase for the Children's Mental 
        Health program, increasing funding to $106 million.
  --Programs of Regional and National Significance.--CMHS's own 
        discretionary budget--known as Programs of Regional and 
        National Significance (PRNS)--would increase under the 
        President's budget to $271 million. This includes the $44 
        million mental health system transformation initiative noted 
        above.
  --Co-Occurring Disorders.--The request for fiscal year 2005 for the 
        PRNS program includes $15.2 million in ongoing and new funding 
        for best practices and targeted capacity expansion grants to 
        foster increased access to integrated treatment for individuals 
        with co-occurring mental illness and substance abuse disorders. 
        SAMHSA has an important leadership role to play on this issue. 
        NAMI strongly urges this Subcommittee to support expansion of 
        SAMHSA's activities on this critical priority.
  --Jail Diversion.--NAMI is disappointed that the President's budget 
        does not request continued funding for the $7 million Jail 
        Diversion program at CMHS. NAMI strongly supports the Jail 
        Diversion program and urges continuation of funding in fiscal 
        year 2005.
  --Suicide Prevention.--NAMI strongly supports continuation and 
        expansion of CMHS's best practices grants and contracts to 
        support suicide prevention. The President's ``New Freedom 
        Initiative'' Mental Health Commission report contains important 
        recommendations on making suicide prevention a national 
        priority. NAMI supports these recommendations as critical to 
        addressing the estimated 30,000 suicides that occur every year 
        in our country--90 percent of which involve a victim with a 
        mental disorder.
      national institute of mental health (nimh) research funding
    The National Institute of Mental Health (NIMH) is the only federal 
agency with the main objective of funding biomedical research into 
serious mental illnesses. Increased funding and focus is needed to 
achieve the promise of exciting gains in understanding the brain in 
upcoming years.
NIMH--Smallest Proposed Increase in 8 Years
    For fiscal year 2005, the President is proposing a $1.421 billion 
budget for the NIMH. This is a $39 million increase--2.2 percent--over 
the amount Congress appropriated for NIMH for fiscal year 2004 ($1.39 
billion). While this exceeds the average 0.5 percent increase for all 
domestic discretionary spending, it is below the 2.7 percent increase 
proposed for all of the National Institutes of Health (NIH)--which 
would increase to $28.805 billion under the President's budget. In 
addition, this proposed increase for NIMH for fiscal year 2005 is below 
the 3.6 percent increase that Congress enacted for fiscal year 2004 and 
far below the 8 percent and 9 percent annual increases that were 
achieved between fiscal year 1998 and 2003.
    This minimal budget increase is expected to have a serious impact 
on the ability of NIMH to sustain ongoing multi-year research grants 
that have been initiated over the past 3-4 years and fund new grant 
proposals relevant to serious mental illness. This is especially the 
case if Congress accepts a proposal being floated by NIH to limit 
annual ``cost of doing research'' adjustments to individual grants to 1 
percent per year. NAMI remains very concerned that this coming fall-off 
in budget increases for NIH does not wipe out the new research that has 
been undertaken at NIMH in recent years, and take advantage of the 
significant opportunities to advance treatments and cures for serious 
mental disorders.
    Mr. Chairman, NAMI is deeply grateful for your leadership on this 
Subcommittee in seeking a strong budget for NIH and NIMH. The 
bipartisan commitment to scientific research that you and Senator 
Harkin continue to demonstrate is an example to your colleagues in 
Congress and in the Administration. We commend you for your amendment 
on the Senate floor during debate on the fiscal year 2005 budget 
resolution to increase NIH funding above the President's request. NAMI 
urges you and your colleagues to make every effort to fund in NIMH at 
the ``professional judgment'' recommendation for fiscal year 2005--
$1.555 billion, or $172.8 million above the fiscal year 2004 level.
``Roadmap to Recovery and Cure''--NAMI's Advocacy Goals and Strategies 
        on Mental Illness Research
    This month, the NAMI Policy Research Institute is releasing a new 
report, Roadmap to Recovery and Cure, urging significant increases in 
the NIMH budget for basic, clinical and health services research 
focused on serious mental illness. The reality is that dramatic 
improvements in the lives of individuals with mental illness can be 
achieved over the next decade if research is expanded and the treatment 
system reformed and brought into closer alignment with research.
    Among the conclusions in Roadmap to Recovery and Cure are that 
serious mental illness research has been underfunded, compared to other 
chronic, disabling illnesses, and is insufficiently prioritized at 
NIMH. The task force also found that psychiatric research has only 
begun to enter the modern era of biomedical research and requires the 
development of a strong base of basic and interdisciplinary research, 
large, policy-relevant clinical trials and services research directly 
tied to service delivery. It is important to note that all of these are 
integral to the Bush Administration's Roadmap to Medical Research 
initiative that is currently driving research priorities at NIH.
    Among the recommendations in this report are:
  --Significant and accountable increases in NIMH funding of basic, 
        clinical and services research focused on serious mental 
        illness--$1 billion over 5 years,
  --Increased application of the NIH's Roadmap to Medical Research 
        initiative to serious mental illness,
  --Continuation and expansion of clinical trials focused on serious 
        mental illness,
  --Coordination of serious mental illness research, dissemination, and 
        service system policy efforts by the federal government, and
  --Increased training and support of researchers and mental health 
        care providers.
The Case for Increased Federal Investment in Mental Illness Research
    Further research is imperative if we are to prevent the next 
generation from suffering. Much has to be learned. The causes and 
mechanisms of diseases such as schizophrenia and bipolar disorder are 
mostly unknown. We do not yet have laboratory tests that can diagnose 
these illnesses. There are no side-effect free treatments. And, of 
course, there is no primary preventive measure or cure currently 
available.
    Treatment is imperfect; it does not work well for all individuals 
living with these brain diseases. There are no cures for severe mental 
illnesses, and existing treatments and services shown to be effective 
are all too often not available to the people who need and deserve 
them. While steady research-funding gains have been achieved, NAMI 
believes that severe mental illness research, from the most basic to 
services research, remains underfunded, given the tremendous scientific 
opportunities that exist and the severe burden that these diseases 
present to the public as well as to our families.
    The public health burden associated with severe mental illness is 
enormous, accounting for a large percentage of costs imposed by all 
illnesses in the United States. An independent study by the World Bank 
and World Health Organization (DALY: Disability Adjusted Life Years) 
found that four of the top ten causes of disability worldwide are 
severe mental illnesses: major depression, bipolar disorder, 
schizophrenia, and obsessive-compulsive disorder, accounting for 25 
percent of the total disability resulting from all diseases and 
injuries.
Where Should Funding at NIMH Be Directed?
    Greater Focus & Accountability on Severe Mental Illness.--NAMI 
believes that more focus is needed at NIMH on severe mental illness 
research. NAMI therefore urges Congress to require NIMH to provide an 
accounting of new and existing research grants broken down by specific 
illnesses.
    Basic Neuroscience.--NIMH needs to continue progress that has been 
made in unraveling the mysteries of molecules, genes, and brain 
interconnections related to higher brain functioning in brain health 
and serious disease.
    Treatment Research.--Currently there is a lack of understanding 
about which treatments work best for which patients, in what 
combination, and with what risks and costs. NIMH has invested in 
significant research to improve this understanding and it should be 
continued and expanded in the current budget. Importantly, new 
treatments must be developed as well.
    Services Implementation.--There are many important, even crucial 
research questions relevant to the treatment system that serves 
individuals with severe mental illnesses--ranging from improving the 
provision of evidence-based care to identifying exactly how much public 
monies are being spent on a treatment system that more often than not 
is failing.
    Consumer and Family Involvement in Research.--All of these efforts 
at NIMH must be done with a greater involvement with and accountability 
to those patients with severe illnesses and their families. Recent 
efforts at NIMH have moved in this direction, but more needs to be done 
to integrate families and patients into annual reporting and strategic 
planning on research investments and accomplishments.
                               conclusion
    Chairman Specter, Senator Harkin and members of the Subcommittee, 
thank you for the opportunity to offer NAMI's views on your fiscal year 
2005 bill.
                                 ______
                                 
  Prepared Statement of the Association of Maternal and Child Health 
                                Programs
    Mr. Chairman and members of the subcommittee, the Association of 
Maternal and Child Health Programs (AMCHP) is pleased to submit 
testimony on the Maternal and Child Health Services Block Grant as you 
consider the fiscal year 2005 funding request for the Department of 
Health and Human Services. AMCHP is a national non-profit organization 
representing the leaders of state public health programs for maternal 
and child health, and children with special health care needs in all 50 
states, the District of Columbia, and eight additional jurisdictions. 
AMCHP appreciates the subcommittee's continued support of the MCHBG, 
the common source of funding for our members.
    I urge you to provide $807 million for the Maternal and Child 
Health Services Block Grant (MCHBG) in fiscal year 2005. This funding 
level is necessary to maintain at least fiscal year 2003 levels of 
service in every state. Additionally, continued funding ($5 million) 
within the Special Projects of Regional and National Significance 
(SPRANS) set-aside for MCH oral health grant activities is critical. As 
I will explain below, these funds are needed to help state MCH programs 
that have been hit hard by state budget cuts, rising demand for 
services, and years of federal flat funding.
    Maternal and child health programs help to increase immunization 
and newborn screening rates, reduce infant mortality, prevent childhood 
accidents and injuries, and reduce adolescent pregnancy. Each year, 
more than 27 million women, infants, children and adolescents, 
including those with special health care needs, are served by MCH Block 
Grant funds. Half of the 4 million women who give birth annually 
receive some prenatal or postnatal services made possible by the MCHBG.
    State maternal and child health programs need strong financial 
support to meet the challenges ahead. Unfortunately, this year 31 
states (Alabama, Arkansas, Colorado, Illinois, Indiana, Iowa, Kansas, 
Kentucky, Louisiana, Maine, Massachusetts, Michigan, Minnesota, 
Mississippi, Missouri, Montana, Nebraska, New Mexico, North Dakota, 
Ohio, Oklahoma, Pennsylvania, South Carolina, South Dakota, Tennessee, 
Texas, Utah, Vermont, West Virginia, Wisconsin, Wyoming) receive less 
in MCH block grant funding than in fiscal year 2003. These cuts range 
from a few thousand dollars to over $1.6 million. Please see the chart 
at the end of this testimony.
    The President's fiscal year 2005 budget flat funds the MCH Block 
Grant at $730 million again. The President also proposes to add the 
Universal Newborn Hearing Screening/Trauma Programs to the MCHBG 
without the $13 million that the programs received in fiscal year 2003. 
This would force states to cut other worthy MCH programs in order to 
continue important hearing screening activities or to scale back their 
hearing screening activities. According to a recent report, thanks to 
the HRSA funding, the number of infants screened for hearing loss at 
birth rose almost 20 percent in 2003. Today, 86 percent of infants born 
in hospitals nationwide are screened for hearing loss, up from 25 
percent in 1999.
    The need for increased funding is clear and I urge you to provide 
$807 million for the Maternal and Child Health Services Block Grant in 
fiscal year 2005. This increase assures that every state receive at 
least the amount that they received from the MCH Block Grant in fiscal 
year 2003. Without this funding, states' ability to serve the millions 
of American women, children, and their families who rely on these 
programs (approximately 27 million in 2002) would be jeopardized. In 
every state, Title V is a safety net program for low-income women and 
children, often the payor of last resort for needed medical services 
when other sources of payment (either public or private) are not 
available.
    State programs funded through the MCH Block Grant make a 
difference. Without sufficient funding, over 18 million children will 
be without the vital health care they need, over 2 million pregnant 
women will not receive prenatal and postnatal care and have a healthy 
pregnancy, and almost 1 million children with special health care need 
will have to battle a fragmented health care system on their own to get 
the services they require.
    Below are specific examples of how reductions at the state and 
federal levels have affected state maternal and child health programs. 
Please keep in mind that the actual effect of the cuts will not be 
fully felt until fiscal year 2005. That's why it is important that you 
provide sufficient funding in the fiscal year 2005 for the Maternal and 
Child Health Services Block Grant.
                                  ohio
    Ohio received one of the steepest cuts in aid, losing $1.5 million 
(or 6 percent) between fiscal year 2003 and fiscal year 2004 in federal 
MCH funding. Combined with a $7.5 million decline in the state funds 
available to support MCH, the ability for the program to maintain 
services to the 266,000 women, infants, and children who received 
services in 2002 has been severely compromised. Ohio's Children with 
Special Health Care Needs (CSHCN) program, because of both state cuts 
and cuts in the Ohio MCH Block Grant, has had to decrease the number of 
diagnoses covered by the CSHCN Treatment Program and to change the 
eligibility rules to reduce the services provided. Three diagnosed 
conditions (Tonsils/adenoids, Serous otitis media, Hernias--except 
diaphragmatic) were eliminated from the list of those eligible to 
receive services, affecting almost 600 children.
    Other changes may reduce, by as much as 25 percent, the 5,000 
children who rely on the program. Co-payments are increased for 
families. Children with special health care needs require more frequent 
office visits. Raising co-payments can significantly impact the 
financial and physical health of these families and their children if 
they are unable to pay them. These families turn to Title V when 
insurance (either private or public) cannot provide the services. The 
Ohio Specialty Field Clinic Program received a 20 percent decrease in 
MCH block grant and other funding support. The Specialty Clinic Program 
provides access to pediatric specialists for children in Ohio. The 
number of clinics will be cut, all in rural Ohio where the greatest 
need for services are. This will affect the access to care for 300 
children in Ohio's rural areas. Cardiac Specialty Clinics will be 
closed as of July 1, 2004. Funding reductions also slow the ability to 
respond to emerging issues, such as an increase in Ohio's infant 
mortality rate.
                                alabama
    Alabama lost $450,000 in federal funding. Combined with state cuts, 
the MCH program has had to significantly cut back services and staff. 
Funding for the Monsky Developmental Clinic was slashed by 50 percent. 
The Monsky Developmental Clinic provides developmental assessments of 
children with suspected or documented developmental delay (primarily 
for children from low income families). The clinic maintains a highly 
specialized multi-disciplined staff of professionals. Monsky is one of 
two clinics in Alabama that provides this service for children with 
special health care needs and serves the South Alabama region. The MCH 
program is the largest financial supporter of the clinic. MCH also lost 
a public health nurse position that had been working to engage the 
growing Hispanic community. Without funding to fill the position, it 
will be difficult to pro-actively address perinatal issues in the 
growing Hispanic/Latino population in Alabama. There were 2,630 live 
births to Hispanic/Latino Alabama residents in CY 2002: a 14.7 percent 
increase over the number in CY 2001.
                                  iowa
    Iowa lost approximately $355,000 in fiscal year 2004. These cuts 
forced the Iowa Children with Special Health Care Needs program (Iowa 
Health Specialty Clinics program at the University of Iowa) to cut 
nutrition services to all children with special needs across Iowa, 
close the regional specialty clinic in Waterloo, cut the Dubuque clinic 
by 80 percent, and cut two other clinics by 20 percent. Scores of 
parents, teachers and educators who teach children who receive services 
through these clinics have written letters to the CSHCN program 
protesting the closures and/or reductions at these sites citing the 
devastating effect on those in need of the services.
                                 texas
    Texas received a reduction of $753,000 (3 percent) in federal MCH 
funds. That reduction along with a reduction in state funds for MCH in 
2004-2005 will drastically increase the unmet needs of the MCH 
population in Texas. Currently, the MCH program addresses less than 10 
percent of the MCH population-in-need. For example, Title V MCH fiscal 
year 2004 contracts funding for population-based services (i.e., 
initiatives directed toward teen pregnancy, childhood obesity, 
immunization, etc) was decreased by 33 percent and by 13 percent for 
direct services (prenatal care, child well-check visits, dental, family 
planning, etc.). In 2001, the Texas Children with Special Health Care 
Needs program instituted a waiting list that has grown to 1,200 
families and is expected to continue to increase.
                               wisconsin
    Wisconsin loses $776,600 (or 6 percent). Options being considered 
to address this shortfall include applying an across-the-board cut to 
local projects as well as at the state and regional offices. A 
reduction to local projects translates to less activities and services 
received by the maternal and child health population. This will 
translate to children and families not receiving necessary services. In 
light of these cuts and the many more that I am unable to include in 
this testimony, I strongly urge you to provide states increased 
resources through the MCH block grant in fiscal year 2005 to protect 
services to low income pregnant women, infants, children with special 
health care needs and their families. $807 million in fiscal year 2005 
does just that.
    Again, thank you for this opportunity to testify.

----------------------------------------------------------------------------------------------------------------
                                                                            Fiscal year
                                                                 --------------------------------
                              State                                                    2004         Difference
                                                                    2003 actual     conference
----------------------------------------------------------------------------------------------------------------
Alabama.........................................................     $12,866,149     $12,415,309       -$450,840
Alaska..........................................................       1,146,370       1,180,409          34,039
Arizona.........................................................       7,406,094       7,842,357         436,263
Arkansas........................................................       7,785,008       7,524,664        -260,344
California......................................................      44,341,423      48,441,501       4,100,078
Colorado........................................................       7,794,869       7,603,353        -191,516
Connecticut.....................................................       4,946,958       4,998,766          51,808
Delaware........................................................       1,982,247       2,034,791          52,544
District of Columbia............................................       7,050,811       7,170,736         119,925
Florida.........................................................      20,017,388      20,994,684         977,296
Georgia.........................................................      17,316,887      17,348,033          31,146
Hawaii..........................................................       2,281,433       2,392,416         110,983
Idaho...........................................................       3,373,874       3,387,761          13,887
Illinois........................................................      23,969,437      23,027,020        -942,417
Indiana.........................................................      12,665,552      12,318,758        -346,794
Iowa............................................................       7,115,676       6,760,133        -355,543
Kansas..........................................................       5,151,370       4,963,545        -187,825
Kentucky........................................................      12,553,023      11,948,246        -604,777
Louisiana.......................................................      15,533,194      14,293,453      -1,239,741
Maine...........................................................       3,546,787       3,518,418         -28,369
Maryland........................................................      12,212,800      12,367,885         155,085
Massachusetts...................................................      12,046,095      11,968,951         -77,144
Michigan........................................................      21,596,187      19,903,294      -1,692,893
Minnesota.......................................................       9,845,406       9,427,666        -417,740
Mississippi.....................................................      11,169,460      10,337,878        -831,582
Missouri........................................................      13,318,533      13,030,039        -288,494
Montana.........................................................       2,609,133       2,560,004         -49,129
Nebraska........................................................       4,270,142       4,183,264         -86,878
Nevada..........................................................       1,581,541       1,996,035         414,494
New Hampshire...................................................       2,023,344       2,071,712          48,368
New Jersey......................................................      12,102,033      12,348,050         246,017
New Mexico......................................................       4,798,959       4,723,796         -75,163
New York........................................................      42,726,728      43,708,310         981,582
North Carolina..................................................      17,183,075      17,522,028         338,953
North Dakota....................................................       2,007,580       1,882,687        -124,893
Ohio............................................................      24,889,019      23,310,577      -1,578,442
Oklahoma........................................................       8,041,242       7,791,761        -249,481
Oregon..........................................................       6,484,811       6,579,878          95,067
Pennsylvania....................................................      26,051,877      25,621,198        -430,679
Rhode Island....................................................       1,768,713       1,890,246         121,533
South Carolina..................................................      12,151,811      11,952,796        -199,015
South Dakota....................................................       2,469,092       2,357,003        -112,089
Tennessee.......................................................      12,693,368      12,419,315        -274,053
Texas...........................................................      38,661,981      37,908,796        -753,185
Utah............................................................       6,336,960       6,222,721        -114,239
Vermont.........................................................       1,746,907       1,742,951           3,956
Virginia........................................................      12,947,026      13,001,114          54,088
Washington......................................................       9,364,663       9,613,745         249,082
West Virginia...................................................       7,058,712       6,712,857        -345,855
Wisconsin.......................................................      11,916,084      11,261,938        -654,146
Wyoming.........................................................       1,333,642       1,309,374         -24,268
                                                                 -----------------------------------------------
      Subtotal..................................................     572,251,474     567,892,222      -4,359,252
----------------------------------------------------------------------------------------------------------------

                                 ______
                                 
      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 29 agencies and departments of the federal government, 
including employees in a number of divisions of the Department of 
Health and Human Services.
    NTEU represents employees in the following divisions of the 
Department of Health and Human Services: 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 (OHA).
    As the Chairman knows, for several years now, most federal agencies 
have struggled to accomplish their missions to the best of their 
abilities within tight fiscal constraints. Many federal agencies have 
not had the necessary funds to adequately train their employees, others 
have been forced to downsize to the point where they are not staffed 
appropriately for their missions and still other agencies have not had 
the resources to use the tools at their disposal to attract and retain 
the workforces they know they need for the future. These tools include 
recruitment and retention bonuses as well as the ability to help 
employees with student loan expenses--tools that the private sector 
knows are imperative to attracting and retaining the best employees.
    The federal government faces an unprecedented recruitment and 
retention crisis. In addition to adequately funding agencies to perform 
their missions, NTEU believes that a major step toward making the 
federal government an employer of choice is a commitment by Congress 
and the Administration to establish a fair process for setting federal 
salaries. As you know, Mr. Chairman, for 2 years in a row now, despite 
a bipartisan and bicameral commitment to pay parity between the 
Nation's military and civilian employees, the President has chosen to 
implement a smaller pay raise for civilian employees only to see that 
raise overturned by subsequent Congressional action.
    The message this sends federal employees is that they are not as 
important as their military counterparts, that they are somehow not as 
deserving of a fair pay raise. Here it is March 2004 and the pay raise 
these employees should have received the first pay period in January 
has still not reached their paychecks. While the full 4.1 percent pay 
raise is retroactive to January, agencies are still struggling to 
update their payroll systems and implement the full amount of the pay 
raise. We are told it may be several more months before all federal 
employees receive the full pay raise Congress approved.
    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 requires. The need for 
the federal government to hire and maintain a highly skilled workforce 
has never been more clear. Federal employees protect our Nation's 
medical supplies, they help secure our borders and they provide 
important services and information to their fellow taxpaying citizens 
every day.
    The Administration's fiscal year 2005 budget request continues to 
hold federal agencies to unrealistic funding levels. We cannot continue 
to ask our agencies to do more while ignoring their requests for 
appropriate funding.
    The Administration's fiscal year 2005 request for program 
management funding at the Health Resources and Services Administration 
(HRSA) is $158 million. Although this figure represents a $3 million 
increase in administrative funds over the fiscal year 2004 funding 
level, it is important to remember that HRSA's 2004 funding level 
represented a reduction of $9 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's budget proposes a substantial increase in funding 
for the National Center for Health Statistics (NCHS) for fiscal year 
2005, a budget increase that is long overdue. As you know, the work 
NCHS undertakes is critical to ensuring that national health care 
initiatives are effective and the agency has been held to unrealistic 
funding levels for too many years now. NTEU hopes the fiscal year 2005 
budget request will be enacted for NCHS.
    The budget request for program management funds in 2005 at the 
Substance Abuse and Mental Health Services Administration (SAMHSA) is 
$92 million, the same as the agency's funding level for fiscal year 
2004. 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. It is discouraging 
to see this important agency held to an unrealistic funding level for 
the coming fiscal year and I am hopeful that program management funding 
for SAMHSA in fiscal year 2005 can be increased.
    The President's budget proposal for fiscal year 2005 for the 
Administration for Children and Families (ACF), represents an increase 
of $12 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 continue to state our strong 
opposition to legislation pending in Congress to reauthorize the Head 
Start Program. As you know, the Head Start Program allows many children 
from low-income families to access a package of educational and social 
services that supplement the student's learning. Under the direction of 
the federal government, the Head Start Program has enhanced the 
opportunities of millions of American children since its inception. 
Legislation that seeks to limit the involvement of the federal 
government with the Head Start Program, such as H.R. 2210, is 
shortsighted and threatens to move the program in the wrong direction. 
Similarly, S. 1940, which encourages contracting out the oversight of 
the Head Start Program to profit-driven firms in the private sector, 
must be reconsidered. I hope that the Committee will carefully review 
the Head Start reauthorization legislation before it is voted on by the 
full House and Senate.
    The President's budget recommends only a slight improvement in 
funding for program administration for the Administration on Aging 
(AoA), holding the agency's program administration funding level to $18 
million for 2005. With our country's rapidly growing older population, 
this is particularly troublesome. The Administration on Aging 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 2005 budget proposal, like the 2004 budget before it offers little 
in the way of 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 slated to receive increased funding in fiscal year 
2005. 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 is pleased to see a significant funding increase for this 
division. We urge the Committee to approve this request.
    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 2004 funding level of $34 
million to $35 million in 2005. The HHS Office for Civil Rights helps 
to ensure that all individuals have proper access to the services and 
programs the Department offers. Moreover, this agency helps promote the 
privacy of medical information. In past years, OCR has been woefully 
under funded and NTEU urges this body to carefully review their funding 
needs for 2005.
    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 that seek out its services. The 
President's fiscal year 2005 budget, which requests an increase in 
expenses for this key agency over their fiscal year 2004 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 a due 
process hearing on their cases. The continuing backlog of cases before 
OHA prevents a fair and timely hearing for the thousands of individuals 
whose disability cases must be heard there. One of the problems facing 
OHA is that it lacks sufficient decision makers to handle its 
continuing and 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. 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. In every respect, the 
Senior Attorney Program was a success. Unfortunately, SSA chose to 
terminate this innovative program as it undertook its Hearings Process 
Improvement (HPI) plan, a plan SSA now admits was unsuccessful.
    On a more positive note, current Social Security Commissioner 
Barnhart has undertaken an objective review of the entire disability 
system. Finally, senior SSA officials truly understand the strengths 
and deficiencies of the current system. This insight combined with the 
Commissioner's commitment to create a process which serves the needs of 
the public rather than the dictates of the bureaucracy, have led her to 
propose a plan for implementing fundamental process changes that will 
provide a level of service of which we all can be proud.
    The plan is comprehensive and involves extensive changes such as 
the eventual replacement of paper folders with electronic folders, 
elimination of the Reconsideration Determination, elimination of the 
Appeals Council, a completely revamped quality assurance system, and 
the creation of the Reviewing Official position to provide an 
intermediate step between the State Agency and the ALJ. NTEU is 
convinced that this plan, if implemented, will result in an efficient, 
effective, and most importantly, a fair adjudicatory process.
    In a particularly important initiative proposed by the 
Commissioner, a Reviewing Official, or RO position, will be created. 
This individual will be an attorney and will apply the same 
adjudicatory standards to the disability determination process, as will 
the Administrative Law Judges. Past experience from the Senior Attorney 
Program indicates that the creation of this position in conjunction 
with the other improvements the Commissioner seeks to put in place will 
result in many disabled claimants being awarded benefits in as little 
as 30 days.
    The President has recognized the importance of providing SSA with 
sufficient resources to enable SSA to implement the Commissioner's plan 
to improve the Social Security disability program. NTEU asks that the 
Congress approve the budget requests of the President regarding the 
funding of the Commissioner's Approach to Disability Adjudication.
    However, as good as the Commissioner's plan is, it does not provide 
immediate relief for those currently waiting for a disability decision. 
Unfortunately, it will be October 2005 at the earliest before the 
Commissioner's recommendations can be implemented. In the meantime, the 
backlog will continue to grow.
    Given the present state of resources, the current workload, and the 
direction that the Commissioner's Approach is taking the Agency, the 
Commissioner should immediately reinstate the original Senior Attorney 
Program. In addition to making a positive, immediate, and effective 
impact on the backlog, it would act as a good transition to the 
Reviewing Official. All qualified OHA Attorney Advisors should be 
empowered to issue fully favorable on-the-record decisions. During the 
period from 1995 to 1999 Senior Attorneys issued over 220,000 fully 
favorable on-the-record decisions, and the cases pending at OHA hearing 
offices fell from over 550,000 cases to 311,000 cases. A well designed 
and well managed Senior Attorney program should be able to process at 
least 60,000 fully favorable reversals in a year without reducing the 
number of ALJ decisions or affecting the overall reversal rate at OHA.
    Implementing the original Senior Attorney Program would require 
limited new hiring and the impact on the backlog would be swift and 
striking. I strongly recommend that this Committee both carefully 
review and embrace the Commissioner's new disability plan and also 
encourage SSA to implement the original Senior Attorney Program once 
again without delay.
    Thank you very much for your attention to these issues. I very much 
appreciate the opportunity to share this testimony with you.
                                 ______
                                 
           Prepared Statement of the Oncology Nursing Society
    The Oncology Nursing Society (ONS) appreciates the opportunity to 
submit written comments for the record regarding funding for cancer and 
nursing related programs in fiscal year 2005. ONS, the largest 
professional oncology group in the United States composed of more than 
30,000 nurses and other health professionals, exists to promote 
excellence in oncology nursing and the provision of quality care to 
those individuals affected by cancer. As part of its mission, the 
Society honors and maintains nursing's historical and essential 
commitment to advocacy for the public good.
    This year more than 1.3 million Americans will be diagnosed with 
cancer and more than 560,000 will lose their battle with this terrible 
disease. Despite these grim statistics, significant gains in the War 
Against Cancer have been made through our nation's investment in cancer 
research and its application. Research holds the key to improved cancer 
prevention, early detection, diagnosis, and treatment but such 
breakthroughs are meaningless unless we can deliver them to all 
Americans in need. One barrier to ensuring that all people benefit from 
breakthroughs in cancer research is that recent studies have reported 
126,000 registered nurse vacancies in hospitals and 13,900 registered 
nurse vacancies in nursing homes.
    To ensure that all people with cancer have access to the 
comprehensive, quality care they need and deserve, ONS advocates 
ongoing and significant federal funding for cancer research and 
application, as well as programs to help ensure an adequate oncology 
nursing workforce to care for people with cancer. The Society stands 
ready to work with policymakers at the local, state, and federal levels 
to advance policies and programs that will reduce and prevent suffering 
from cancer and sustain and strengthen the nation's nursing workforce.
    securing and maintaining an adequate oncology nursing workforce
    Over the last 10 years, the setting in which treatment for cancer 
is provided has changed dramatically. An estimated 80 percent of all 
Americans receive cancer care in community settings including cancer 
centers, physicians' offices, and hospital outpatient departments. 
Treatment regimens are as complex, if not more so, than regimens given 
in the inpatient setting a few short years ago. Oncology nurses are on 
the front lines in the provision of quality cancer care for individuals 
with cancer--administering chemotherapy, managing patient therapies and 
side-effects, working with insurance companies to ensure that patients 
receive the appropriate treatment, providing counseling to patients and 
family members, and engaging in myriad other activities on behalf of 
people with cancer and their families.
    Overall, age is the number one risk factor for developing cancer. 
Approximately 77 percent of all cancers are diagnosed at age 55 and 
older. Currently, Medicare beneficiaries account for more than 50 
percent of all cancer diagnoses and 64 percent of cancer deaths. Of 
serious concern is that over the next 10 to 15 years the number of 
Medicare beneficiaries with cancer is estimated to double while more 
than 1.1 million registered nurse job openings will need to be filled 
by 2012 to meet growing patient demand and replace retiring nurses. 
With an increasing number of people with cancer needing high quality 
health care coupled with an inadequate nursing workforce, our nation 
could quickly face a cancer care crisis of serious proportion with 
limited access to quality cancer care, particularly in traditionally 
underserved areas. A study in the New England Journal of Medicine found 
that nursing shortages in hospitals are associated with a higher risk 
of complications--such as urinary infections and pneumonia, longer 
hospital stays, and even patient death. Without an adequate supply of 
nurses, there will not be enough qualified oncology nurses to provide 
the quality cancer care to a growing population of people in need and 
patient health and well being could suffer.
    Further, of additional concern is that our nation also will have a 
shortage of nurses available and able to conduct cancer research and 
clinical trials. With a shortage of nurses in cancer research, our war 
against cancer will take longer because of unfulfilled staffing needs 
coupled with the reality that in some practices and cancer centers 
resources could be funneled away from cancer research to pay for the 
hiring and retention of oncology nurses to provide direct patient care. 
Without a sufficient supply of trained, educated, and experienced 
oncology nurses, our nation will falter in its delivery--or 
application--of the benefits from our federal investment in research.
    ONS has joined with others in the nursing community in advocating 
$205 million as the fiscal year 2005 funding level necessary to support 
implementation of the Nurse Reinvestment Act and the range of nursing 
workforce programs housed at the U.S. Health Resources and Services 
Administration (HRSA). Enacted in 2002, the Nurse Reinvestment Act 
included new and expanded initiatives, including loan forgiveness, 
scholarships, career ladder opportunities, and public service 
announcements to advance nursing as a career. Despite the enactment of 
this critical measure, HRSA fails to have the resources necessary to 
meet the current and growing demands for our nation's nursing 
workforce. For example, in fiscal year 2003 HRSA received 8,321 
applications for the Nurse Education Loan Repayment Program but only 
had funding to award 602--a rate of 7.2 percent. Also in fiscal year 
2003, the agency received 4,512 applications for the Nursing 
Scholarship Program but only could fund 94--a rate of 2.1 percent. 
Further exacerbating the current situation is that nursing programs 
turned away more than 11,000 qualified students last fall, in part due 
to a shortage of faculty. If funded sufficiently, the components and 
programs of the Nurse Reinvestment Act would help address the multiple 
factors contributing to the nationwide nursing shortage, including the 
shortage of faculty, decline in nursing student enrollments, and poor 
public perception of nursing as a viable and worthwhile profession.
    ONS strongly urges Congress to provide HRSA with a minimum of $205 
million in fiscal year 2005 to ensure that the agency has the resources 
necessary to fund a higher rate of Nurse Education Loan Repayment and 
Nursing Scholarship applications as well as implement other essential 
endeavors to sustain and boost our nation's nursing workforce. Nurses--
along with patients, family members, hospitals, and others--have joined 
together in calling upon Congress to provide this essential level of 
funding. One Voice Against Cancer (OVAC)--a collaboration of more than 
50 national nonprofit organizations representing millions of 
Americans--has added a request of $205 million for the Nurse 
Reinvestment Act funding to its fiscal year 2005 appropriations 
advocacy agenda. ONS and its allies have serious concerns that without 
full funding, the ``Nurse Reinvestment Act'' will prove an empty 
promise; the current and expected nursing shortage will worsen and 
people will not be have access to the quality cancer care they need and 
deserve.
 boost our nation's investment in cancer prevention, early detection, 
                             and awareness
    Approximately two-thirds of cancer cases are preventable through 
lifestyle and behavioral factors and improved practice of cancer 
screening. Although the potential for reducing the human, economic, and 
social costs of cancer by focusing on prevention and early detection 
efforts remains great, our nation does not invest sufficiently in these 
strategies. While as a nation we spend almost $1 trillion a year on our 
health care system, we only allocate about 1 percent of that amount for 
population-based prevention. By the year 2020, cancer and other chronic 
disease expenditures will reach $1 trillion or 80 percent of health 
care costs. The nation must make significant and unprecedented federal 
investments today to address the burden of cancer and other chronic 
diseases and to reduce the demand on the healthcare system and diminish 
suffering in our nation both for today and tomorrow.
    As the nation's leading prevention agency, the Centers for Disease 
Control and Prevention (CDC) plays an important role in translating and 
delivering at the community level what is learned from research--
especially ensuring that those populations disproportionately affected 
by cancer receive the benefits of our nation's investment in medical 
research. Therefore, ONS joins with our partners in the cancer 
community--including One Voice Against Cancer--in calling on Congress 
to provide additional resources for physical activity, nutrition, and 
tobacco control programs and other cancer-related screening, 
prevention, and public health education efforts supported through the 
CDC to support and expand much-needed and proven effective cancer 
prevention, early detection, and risk reduction efforts. Specifically, 
ONS advocates:
  --$250 million for the National Breast and Cervical Cancer Early 
        Detection Program;
  --$65 million for the National Cancer Registries Program:
  --$25 million for the Colorectal Cancer Prevention and Control 
        Initiative;
  --$25 million for the Comprehensive Cancer Control Initiative;
  --$20 million for the Prostate Cancer Control Initiative;
  --$10 million for the National Skin Cancer Prevention Education 
        Program;
  --$9 million for the Ovarian Cancer Control Initiative;
  --$5 million for the Geraldine Ferraro Blood Cancer Program;
  --$130 million for the National Tobacco Control Program; and
  --$70 million for the Nutrition, Physical Activity, and Obesity 
        Program.
            sustain and seize cancer research opportunities
    Our nation has benefited immensely from our past federal investment 
in biomedical research at the National Institutes of Health (NIH). ONS 
has joined with the rest of the cancer community in advocating $30.19 
billion for the NIH in fiscal year 2005. This increase of 8.5 percent 
over fiscal year 2004 funding will allow NIH to sustain and build on 
its research progress resulting from the recent NIH budget doubling 
effort while avoiding the severe disruption to that progress that would 
result from a minimal increase.
    Cancer research is producing extraordinary breakthroughs--leading 
to new therapies that translate into longer survival and improved 
quality of life for cancer patients. We have seen extraordinary 
advances in cancer research resulting from our national investment that 
have produced effective prevention, early detection and treatment 
methods for many cancers. To that end, ONS calls upon Congress to 
allocate $6.2 billion to the National Cancer Institute (NCI) in fiscal 
year 2005 as recommended by the NCI Director in the Bypass Budget 
submitted to Congress annually under the requirements of the National 
Cancer Act of 1971. The NCI Bypass Budget represents the best 
estimation of the scientific community regarding the resources needed 
to continue our battle against cancer.
    The National Institute of Nursing Research (NINR) supports basic 
and clinical research to establish a scientific basis for the care of 
individuals across the life span--from management of patients during 
illness and recovery to the reduction of risks for disease and 
disability and the promotion of healthy lifestyles. These efforts are 
crucial in translating scientific advances into cost-effective health 
care that does not compromise quality of care for patients. 
Additionally, NINR fosters collaborations with many other disciplines 
in areas of mutual interest such as long-term care for older people, 
the special needs of women across the life span, bioethical issues 
associated with genetic testing and counseling, and the impact of 
environmental influences on risk factors for chronic illnesses such as 
cancer. ONS joins with the nursing community in advocating an 
allocation of $160 million for NINR in fiscal year 2005.
                               conclusion
    ONS stands ready to work with policymakers to advance policies and 
support programs that will reduce and prevent suffering from cancer 
this year and sustain and strengthen our nation's nursing workforce. 
Moreover, ONS maintains a strong commitment to working with Members of 
Congress, other nursing societies, patient organizations, and other 
stakeholders to ensure that the oncology nurses of today continue to 
practice tomorrow and that we recruit and retain new oncology nurses to 
meet the unfortunate growing demand that we will face as the baby boom 
generation ages. We thank you for this opportunity to discuss the 
funding levels necessary to ensure that our nation has a sufficient 
nursing workforce to care for the patients of today and tomorrow and 
that our nation continues to make gains in our fight against cancer.
                                 ______
                                 
Prepared Statement of the Association of Women's Health, Obstetric and 
                            Neonatal Nurses
    The Association of Women's Health, Obstetric and Neonatal Nurses 
(AWHONN) appreciates the opportunity to comment on the fiscal year 2005 
appropriations for nursing education, research, and workforce programs, 
as well as programs designed to improve maternal and child health. 
AWHONN is a membership organization of 22,000 nurses whose mission is 
to promote the health of women and newborns. AWHONN members are 
registered nurses, nurse practitioners, certified nurse-midwives, and 
clinical nurse specialists who work in hospitals, physicians' offices, 
universities and community clinics across North America as well as in 
the Armed Forces around the world.
    AWHONN appreciates the support that this Subcommittee has provided 
for nursing education, research and workforce programs, as well as 
maternal and child health programs in the past. We realize that there 
are many competing priorities for the Subcommittee members, and we 
admire your consistent support.
                        growing nursing shortage
    AWHONN supports the advancement of quality care through an adequate 
nurse workforce. Data from the Bureau of Health Professions, Division 
of Nursing's National Sample Survey of Registered Nurses--February 
2002, confirm that of the approximate 2.7 million registered nurses in 
the nation, only about 82 percent of these nurses were working full-
time or part-time in nursing. The increase in the number of licensed 
RNs that was reported from 1996-2000 was the lowest increase reported 
in previous national surveys. In addition to the shrinking pipeline of 
nurses coming into the program, the dominant factor in this shortage is 
the impending retirement of up to 40 percent of the workforce by 2010 
or soon thereafter. This will occur at the same time that the needs of 
the aging baby boomer population will markedly increase demand for 
health care services and the services of registered nurses.
    This critical demand is reinforced by the fact that in February 
2004, the U.S. Bureau of Labor released statistics detailing how 
registered nurses have the largest projected 10-year job growth in the 
United States. Labor projects a need for 2.9 million nurses in 2012, up 
from 2.3 million actively working nurses that was projected in 2002. As 
a result, it will take long-term planning and innovative initiatives at 
the local, state and federal level to assure an adequate supply of a 
qualified nurse workforce for the nation.
Nurse Workforce Development Programs
            AWHONN recommends a total of $205 million for fiscal year 
                    2005 to fund the Nurse Workforce Development 
                    programs in Title VIII
    The Nurse Education Act (Public Health Service Act, Title VIII), 
enacted in 1964, represents the only comprehensive federal legislation 
to provide funds for nursing education. The programs authorized in this 
portion of Public Law 105-392 help schools of nursing and nursing 
students prepare to meet patient needs in a changing health care 
delivery system, favoring programs in institutions that train nurses 
for practice in medically underserved communities and Health 
Professional Shortage Areas.
    Reauthorized as the Nursing Workforce Development section in 1998, 
the new NEA gives the Department of Health and Human Services more 
discretion over the focus of federal spending, while keeping with 
previous goals. In 2002 Congress enacted the Nurse Reinvestment Act 
which provides funding for new and expanded programs. These programs 
include scholarships, career ladders, internships and residencies, 
retention programs and faculty loans designed to encourage students to 
consider nursing, keep nurses in nursing and ensure that nurse 
educators are plentiful enough to educate future nurses that we 
desperately need. The new programs received an initial appropriation of 
$20 million in fiscal year 2003. This appropriation was in addition to 
$93 million in funding provided for existing Title VIII programming. 
Unfortunately, due to limited funding in the first 2 years of the new 
authorization the loans and scholarships programs have not been 
successful in providing support to students in nursing schools. In the 
first year, only 574 loan repayment contracts were made nationally, 
averaging roughly 11 loan repayment agreements per state and less than 
2 percent of all scholarship applicants were funded.
    The shortage of registered nurses and the effect of the shortage on 
nurse staffing and patient safety demand a significant increase in 
funding for these nurse education programs. Nursing is the largest 
health profession with over 2.7 million nurses, yet only one-tenth of 1 
percent of the federal health funding of the nation is directed to 
nursing education. A significant increase in funding for these programs 
would lay the groundwork to expand the nursing workforce, through 
education, clinical training and retention programs, in order to 
address some of the serious nursing shortage issues. This investment in 
nursing education and retention will ultimately benefit us all through 
improved patient care and health outcomes.
    The nursing shortage is not confined solely to care providers; 
there is also a growing, significant shortage of nurse faculty. The 
American Association of Colleges of Nursing (AACN) reports that the 
average age of nursing professors is 52, and for associate professors 
the average age is 49. The impending retirement of these seasoned 
educators will impact the ability of our schools and universities to 
meet the educational health care needs of the nation. In addition, each 
year nearly 1,800 full-time faculty members leave their positions while 
only 350 to 400 nursing students receive doctoral degrees. According to 
AACN, U.S. nursing schools turned away over 11,000 qualified applicants 
to baccalaureate nursing programs in 2003 due to insufficient faculty, 
clinical sites, classroom space, and budget constraints. While the 
capacity to implement faculty development is currently available 
through Section 811 and Section 831, adequate funding and direction is 
needed to ensure that these programs are fully operational. Options to 
provide support for full-time doctoral study are essential to rapidly 
prepare the nurse educators of the future. AWHONN suggests that a 
portion of the funds be allocated for faculty development and 
mentoring. Further, AWHONN recognizes the importance of appropriate 
investments in advanced practice nursing programs. As in other 
professions the advanced degree has become a necessary achievement for 
career advancement and registered nurses who pursue the MSN degree are 
a part of the cadre of nurses who go on to become faculty. Our nation 
does need more nurses with basic training to enter the field, but 
focusing only on these nurses only addresses half the problem. The 
nursing shortage encompasses nursing faculty--advanced practice nursing 
and basic nursing must both receive additional funding, but not one at 
the expense of the other.
Maternal and Child Health Bureau
            AWHONN recommends $850 million in funding in fiscal year 
                    2005 for the Maternal and Child Health Bureau
    This program provides comprehensive, preventive care for mothers 
and young children, as well as an array of coordinated services for 
children with special needs. In fact, the Maternal Child Health Block 
Grant (MCH) serves over 80 percent of all infants in the United States, 
half of all pregnant women, and 20 percent of all children.
    MCH programs are facing increased demands for services due to 
continued growth in the Children's Health Insurance Program, which in 
turn identifies more children who are eligible for other MCH Services. 
Title V complements Medicaid and the State Children's Health Insurance 
Program by providing ``wrap-around'' services and enhanced access to 
care in underserved areas. Additional funding would give states the 
resources they need to expand prenatal and infancy home visitation 
programs, an approach that has been shown, in NINR research, to improve 
the prenatal health-related behavior of women and reduce rates of child 
abuse and neglect as well as maternal welfare dependence.
Indian Health Service
            AWHONN recommends an fiscal year 2005 appropriation of 
                    $5.54 billion for IHS.
    The Indian Health Service (IHS) is the principal Federal health 
care provider and health advocate for Indian people with the goal of 
``ensur[ing] that comprehensive, culturally acceptable personal and 
public health services are available and accessible to all American 
Indian and Alaska Native people.'' IHS is tasked with an enormous 
responsibility in providing care to over half of the American Indian 
population.
    The American Indian and Alaska Native people have long experienced 
lower health status when compared with other Americans. Lower life 
expectancy and the disproportionate disease burden exist perhaps 
because of inadequate education, disproportionate poverty, 
discrimination in the delivery of health services, and cultural 
differences. These are broad quality of life issues rooted in economic 
adversity and poor social conditions.
    A recent study of federal health care spending per capita found 
that the United States spends $3,803 per year per federal prisoner, 
while spending about half that amount per year, per Native American: 
$1,914. per capita health care spending for the U.S. general population 
is $5,065 per year. A significant increase in funding over fiscal year 
2004 spending levels is necessary for the Federal government to fulfill 
its responsibility to Indian Country and achieve its stated goals.
    While the nursing shortage continues nationwide, IHS has been 
disproportionately impacted by the lack of RNs. IHS nurses are older, 
with an average age of 48 and nearly 80 percent of RNs are over the age 
of 40, and the average vacancy rate for RNs is 14 percent. IHS 
administers three interrelated scholarship programs designed to meet 
the health professional staffing needs of IHS and other health programs 
serving Indian people. These programs are severely under-funded. 
Targeted resources need to be invested in the IHS health professions 
programs in order to recruit and retain registered nurses in Indian 
Country.
    Additionally, Section 112 of the Indian Health Care Improvement 
Act, Public Law 94-437, authorizes grants to public or private schools 
of nursing, tribally-controlled community colleges and tribally-
controlled post secondary vocational institutions for the purpose of 
recruiting, training and increasing the number of professional nurses 
who deliver health care services to Indian people. On average, Section 
112 programs provide five undergraduate scholarships per year and two 
master's program scholarships. This important program should be 
expanded to provide many more scholarships, both at the undergraduate 
and graduate levels, in an effort to offer meaningful relief to the 
nursing shortage for IHS healthcare providers and the patients they 
serve.
National Institute of Nursing Research (NINR)
            AWHONN recommends an increase of $25 million over fiscal 
                    year 2004 funding levels for the NINR, resulting in 
                    an fiscal year 2005 appropriation of $160 million
    NINR engages in significant research affecting areas such as: 
health disparities in ethnic groups, training opportunities for 
management of patient care and recovery, and telehealth interventions 
in rural/underserved populations. These research programs directly help 
patients and families and contribute to decreased medical costs and 
increased quality of patient care. This research allows us to refine 
the practice and provide quality patient care in its current 
challenging environment.
    NINR research improves health outcomes for women. Recent public 
awareness campaigns target differences in the manifestation of 
cardiovascular disease between men and women. The differing symptoms 
are the source of many missed diagnostic opportunities among women 
suffering from the disease, which is the primary killer of American 
women. In a study funded by NINR, researchers were able to 
qualitatively analyze the intensity of pain and limitation of activity 
experienced by women suffering from angina, both of which were found to 
be of greater intensity than that experienced by men. The study 
concluded that the gender variation could significantly impact 
diagnosis and treatment of female patients suffering from related 
cardiovascular problems.
    Because of the emphasis on biomedical research in this country, 
there are few sources of funds for high-quality behavioral research for 
nursing other than NINR. It is critical that we increase funding in 
this area in an effort to improve the consumer's experience with the 
health care system, optimize patient outcomes and decrease the need for 
extended hospitalization.
National Institute of Child and Human Development (NICHD)
            AWHONN supports a 10 percent increase in funding for NICHD 
                    for fiscal year 2005, bringing the appropriation to 
                    $1.315 billion
    NICHD seeks to ensure that every baby is born healthy, that women 
suffer no adverse consequences from pregnancy, and that all children 
have the opportunity to fulfill their potential for a healthy and 
productive life unhampered by disease or disability. With increased 
funding NICHD could expand its use of the NICHD Maternal-Fetal Medicine 
Network to study ways to reduce the incidence of low birth weight. 
Prematurity/low birthweight is the second leading cause of infant 
mortality in the United States and the leading cause of death among 
African American infants. AWHONN, like many organizations directly 
involved in initiates to improve the health of women and newborns, 
looks to NICHD to provide national initiatives, such as the Maternal-
Fetal Medicine Network to assist with the care of pregnant women and 
babies.
    Recently NICHD announced the publication of research that led to 
the finding of predictors of preeclampsia, a life-threatening 
complication impacting 5 percent of all pregnancies. Abnormal levels of 
two molecules found in the blood, soluble fms-like tyrosine kinase 1 
(sFlt-1) and placental growth factor (PlGF), seemed to predict the 
development of preeclampsia. This finding has been touted as the most 
promising lead yet discovered in the effort to prevent and cure 
preeclampsia.
National Institutes of Environmental Health Sciences (NIEHS)
            AWHONN supports an 8 percent increase in funding for NIEHS 
                    for fiscal year 2005, bringing the appropriation to 
                    $680 million
    Research conducted by the NIEHS plays a critical role in what we 
know about the relationship between our environmental exposures and 
disease onset. Through the research sponsored by this Institute, we 
know that Parkinson's disease, breast cancer, birth defects, 
miscarriage, delayed or diminished cognitive function, infertility, 
asthma and many other diseases and ailments have confirmed 
environmental triggers. Our expanded knowledge, as a result, allows 
both policy makers and the general public to make important decisions 
about how to reduce toxin exposure and reduce the risk of disease and 
other negative health outcomes.
    One impressive collaborative research project spearheaded by the 
NIEHS is the recent development of Breast Cancer and the Environment 
Research Centers. These centers, co-funded by the National Cancer 
Institute, will study the prenatal-to-adult environmental exposures 
that may predispose a woman to breast cancer. Recognizing that one in 
eight women in the United States can expect to have breast cancer in 
her lifetime, and that the causes of most of these cases are not known; 
the centers will enroll different ethnic groups of young girls and 
study their life exposures to a wide variety of environmental, 
nutritional and social factors that impact puberty.
Centers for Disease Control and Prevention (CDC)
            AWHONN recommends an fiscal year 2005 appropriation of $7.9 
                    billion for the CDC
    For nearly 60 years, the Centers for Disease Control and Prevention 
(CDC) has evolved to assume responsibility for programs in infectious 
disease surveillance, control and prevention, injury control, health in 
the workplace, prevention of heart disease, cancer, stroke, obesity and 
other chronic diseases, improvements in nutrition and immunization, 
environmental effects on health, prevention of birth defects, 
laboratory analyses, outbreak investigation and epidemiology training, 
and data collection and analysis on a host of vital statistics and 
other health indicators. Now more than ever, CDC's role in protecting 
the nation's health through prevention has become evident as we address 
issues of terrorism, emergency preparedness and health system capacity 
and infrastructure. Increased funding for CDC is critical.
    For over 30 years, CDC has been deeply involved in the prevention 
of birth defects through programs like the Folic Acid Education 
Campaign and the new National Center on Birth Defects and Developmental 
Disabilities (NCBDDD). The public health impact of birth defects is 
tremendous. Of the 4 million babies born each year in the United 
States, approximately 150,000 are born with a serious birth defect. 
According to CDC, the lifetime costs of caring for infants born in 
1992, with at least one birth defect \1\ or cerebral palsy was about $8 
billion. The emotional and financial burden for the families with 
affected children is devastating. CDC funds several programs critical 
to reducing the number of children born with birth defects.
---------------------------------------------------------------------------
    \1\ These birth defects include: Spina bifida, truncus arteriosus, 
single ventricle, transposition/double outlet right ventricle, 
Tetralogy of Fallot, tracheo-esophageal fistula, colorectal atresia, 
cleft lip or palate, atresia/stenosis of small intestine, renal 
agenesis, urinary obstruction, lower-limb reduction, upper-limb 
reduction, omphalocele, gastroschisis, Down syndrome, and diaphragmatic 
hernia.
---------------------------------------------------------------------------
    Heart disease and stroke are the first and third leading causes of 
death in the United States, causing one death every 33 seconds and $298 
billion a year in healthcare costs and lost productivity, according to 
CDC estimates. Women are most commonly misdiagnosed for cardiovascular 
disease and nearly 8 million women are currently living with 
cardiovascular disease. Cardiovascular disease kills nearly half of all 
American women. Additionally, 61 percent of American adults are 
overweight or obese and nearly 14 percent of children and adolescents 
are overweight. Obesity is considered a major public health problem 
because it serves as the gateway disease for many other illnesses 
including but not limited to: depression, type 2 diabetes, 
hypertension, congestive heart failure, stroke, poor female 
reproductive health and pregnancy complications. These are but two 
examples of illnesses with programmatic public health funding through 
CDC. Any cuts to these programs will potentially leave millions of 
Americans without primary prevention programs that ultimately save 
lives and money. We respectfully request that you provide CDC chronic 
disease prevention and health promotion programs with $1.1 billion to 
ensure that these programs have the resources necessary to translate 
preventive health research into practice. This investment will save 
lives and billions in health care costs and productivity.
    Please find below a summary of AWHONN formal funding 
recommendations for these and other federal health programs.

----------------------------------------------------------------------------------------------------------------
                                                                               President's
                   Programmatic area                     Final fiscal year    budget fiscal     AWHONN's request
                                                                2004            year 2005
----------------------------------------------------------------------------------------------------------------
Nurse Workforce Development Programs...................       $142,763,000       $147,000,000       $205,000,000
Maternal & Child Health Block Grant....................        730,000,000        730,000,000        850,000,000
Indian Health Service..................................      3,671,000,000      3,356,000,000      5,540,000,000
Title X--Family Planning...............................        278,000,000        278,000,000        350,000,000
Newborn Hearing Screening..............................         13,000,000  .................         13,000,000
AHRQ...................................................        305,000,000        305,000,000        443,000,000
NIH....................................................     28,041,000,000     28,805,000,000     31,685,500,000
NINR...................................................        135,000,000        139,000,000        160,000,000
NICHD..................................................      1,242,000,000      1,281,000,000      1,315,000,000
NIEHS..................................................        631,000,000        650,000,000        680,000,000
CDC....................................................      6,972,000,000      6,859,000,000      7,900,000,000
----------------------------------------------------------------------------------------------------------------

    Thank you for the opportunity to submit testimony on these critical 
areas of funding.
    Contact: Lisa M. Greenhill, MPA, Legislative Manager Department of 
Public Affairs Association of Women's Health, Obstetric and Neonatal 
Nurses 2000 L St. NW, Suite 740, Washington, DC 20036 (202) 261-2402 
[email protected]
                                 ______
                                 
          Prepared Statement of the American Heart Association
    Heart disease, stroke and other cardiovascular diseases kill more 
Americans each year than the next 5 leading causes of death combined, 
putting people of all ages at risk. Cardiovascular diseases remain our 
nation's No. 1 killer and a major cause of disability. 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 no. 1--an unhappy distinction
    Cardiovascular diseases represent a continuing crisis of pandemic 
proportions. More than 64 million Americans suffer from these diseases, 
and risk factors are on the rise. While smoking is the top preventable 
cause of death, the obesity epidemic is catching up. Obesity rates are 
rising in adults and in children. Also, an estimated 50 million 
Americans have high blood pressure, 37 million adults have high 
cholesterol, and more than 11 million have diagnosed diabetes. Also, 
cardiovascular diseases cost Americans more than any other disease--an 
estimated $368 billion in medical expenses and lost productivity in 
2004. Heart disease is the major cause of premature, permanent 
disability of American workers, accounting for about 20 percent of 
Social Security disability payments. Stroke is a main cause of 
disability. Heart defects are the most common birth defect and cause 
more infant deaths than any other birth defect.
                      you are part of the solution
    Now is the time to capitalize on progress in understanding heart 
disease, stroke and other cardiovascular diseases. Promising, cost-
effective breakthroughs in treatment and prevention are on the horizon. 
A continued, sustained investment in the NIH and appropriate funding 
for NIH heart disease and stroke will support promising and critically 
needed new initiatives and the translation of that research into useful 
clinical and state programs. For fiscal year 2005, we urge you to:
Appropriate $30.6 billion for the National Institutes of Health (NIH)--
        to provide a continued, sustained investment in life-saving 
        medical research
    NIH research provides new treatment and prevention strategies, 
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 $410 million for NIH 
        stroke research
    Researchers are on the brink of advances to 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 $80 million for Heart Disease and Stroke for the CDC to expand, 
        intensify and coordinate prevention like expanding the State 
        Heart Disease and Stroke Prevention Program and augmenting the 
        Paul Coverdell National Acute Stroke Registry
    Science must be translated into state programs that hearten 
Americans to make healthy lifestyle choices to avert and control heart 
disease and stroke and track and improve stroke care delivery.
Support $45 million to continue to help our communities treat cardiac 
        arrest in time to save victims' lives by initiating automated 
        external defibrillator (AEDs) programs
    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) help communities purchase AEDs and train emergency 
and lay responders in their use.
            heart and stroke research benefits all americans
    The doubling of the NIH budget has led to new breakthroughs in 
treating heart disease and stroke patients and their risk factors for 
these diseases. Several examples follow.
    High Blood Pressure.--A clinical trial concluded that customary 
diuretic drugs should be the first treatment for lowering blood 
pressure. The diuretic tested as well or better than some newer types 
of drugs in preventing high blood pressure complications, including 
fatal and non-fatal heart attacks, strokes and heart failure. The cost 
implications are significant because diuretics cost a fraction of the 
price of the newer drugs.
    Hormone Replacement Therapy.--Researchers concluded that long-term 
estrogen plus progestin therapy risks outweigh its protective benefits. 
Women study participants taking estrogen plus progestin had increased 
risks of heart attack, stroke, breast cancer and blood clots.
    Heart Attack.--More than 5 million patients with chest pain visit 
emergency departments each year, but only about 40 percent can be 
immediately diagnosed with heart attack using standard diagnostic 
tests. Results from a collaborative study using advanced, non-invasive 
magnetic resonance imaging showed that MRI can detect a heart attack in 
emergency room patients with chest pain more accurately and faster than 
standard diagnostic tests. Since patients can be scanned in under 40 
minutes, MRI technology will save lives and reduce disability among 
survivors by allowing doctors to diagnose heart attacks and start 
treatment faster.
    Recurrent Stroke Prevention.--Results of two clinical trials showed 
that aspirin was just as effective in preventing recurrent strokes as 
expensive drugs. Outcomes of the first trial indicated that aspirin 
appears to be as effective as warfarin in preventing a second stroke, 
when heart conditions such as atrial fibrillation, a common heart 
rhythm and rate problem, are not present. Results from the second study 
showed that aspirin is as effective as ticlopidine, a type of clot 
inhibitor, in preventing a second stroke in African-Americans who have 
twice the risk of suffering or dying from a stroke, compared to whites. 
These results will dramatically change physician care in preventing 
second strokes in the general public and in African-Americans. Given 
the lower cost, ease of administration and reduced side effects, 
compared to warfarin and ticlopidine, aspirin will be a cost-effective 
method in preventing subsequent strokes.
    We join other members of the research community in advocating for 
an fiscal year 2005 appropriation of $30.6 billion for the NIH to 
provide a continued, sustained investment in life-saving medical 
research and support investigation into new therapies. The NIH budget 
for heart disease and stroke remains disproportionately under funded 
compared to the enormous burden of these diseases and the numerous 
promising scientific opportunities that could advance the fight against 
these disorders. 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), but the 
NIH still invests only 7 percent of its budget on heart research and a 
mere 1 percent on stroke research. 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
    Advances have been made by more than 50 years of American Heart 
Association-funded research and more than a half-century of investment 
by Congress in the National Heart, Lung, and Blood Institute. While 
more people are surviving heart disease and stroke, they can cause 
permanent disability, requiring costly medical care and loss of 
productivity and quality of life.
    We urge this Committee to appropriate funding for the NHLBI and for 
its heart disease and stroke-related efforts to support and expand 
current activities and to invest in promising and critically needed new 
initiatives to aggressively advance the battle against heart disease 
and stroke. To accomplish this goal, we advocate an appropriation of 
$3.5 billion for the NHLBI, including $2.1 billion for heart disease 
and stroke. This added investment is needed to focus on heart disease 
and stroke challenges and opportunities. Several of these follow.
    Heart Failure Management.--Heart failure is a major cause of 
hospitalization and readmission. Medicare recipients represent about 65 
percent of repeat hospitalizations within 1 year. Yet, perhaps 50 
percent of these hospitalizations are avoidable. Additional funding 
would allow the NHLBI to initiate a planned multi-center, randomized 
trial to evaluate management strategies for heart failure patients in 
terms of their ability to prevent death or hospital readmission. Costs, 
quality of life, physician compliance, and patient adherence to 
prescribed treatment will also be assessed. This clinical trial will 
identify and disseminate useful and effective tools for translation of 
proven therapies for heart failure into patient care.
    Tissue Engineered Blood Vessel Replacement and Repair.--A need 
exists to develop alternatives to natural blood vessels for adults who 
endure heart artery bypass surgery and for children born with complex 
heart defects who need multiple blood vessel grafts. With increased 
funding, this planned initiative will complement exiting tissue 
engineered research programs to stimulate efforts to ``grow'' small-
diameter, functional blood vessels.
    Cardiovascular Health Study.--Initiated in 1987 to determine risk 
factors for development and progression of cardiovascular diseases in 
nearly 6,000 Americans age 65 and older, the Cardiovascular Health 
Study (CHS) is scheduled to end in 2005. The wide variety and 
complexity of data and samples collected in the CHS represent an unique 
national research resource. With increased funding, this planned 
proposal will stimulate innovative use of CHS data and material, 
provide opportunities for open and efficient use of the information for 
the entire scientific community; and continue follow-up of study 
participants.
    Community-Responsive Interventions to Reduce Cardiovascular Risk in 
American Indians and Alaskan Natives.--American Indian and Alaska 
Native communities bear a disproportionate burden of heart disease, 
stroke and other cardiovascular diseases. But, few preventive 
interventions have been tested. Tribal leaders have urged that research 
in their communities focus on finding solutions for the most serious 
issues these populations face, including cardiovascular diseases. To 
address the concerns of the tribal leaders, with increased funding, 
researchers will evaluate approaches to reducing behavioral 
cardiovascular disease risk factors in American Indian and Alaskan 
Native populations. A central part of this planned initiative will be 
the development of interventions that can be incorporated into 
community patient care programs or delivered through other public 
health avenues in native communities.
         stroke research challenges and opportunities for ninds
    Stroke is the No. 3 killer of Americans and a major cause of 
permanent disability. Many of America's 4.8 million stroke survivors 
face debilitating physical and mental impairment, emotional distress 
and huge medical costs. About 1 in 4 stroke survivors is permanently 
disabled. An estimated 700,000 Americans will suffer a stroke this 
year, and nearly 164,000 will die. In addition to the elderly, stroke 
also strikes newborns, children and young adults.
    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 for an fiscal year 2005 appropriation of $1.8 billion 
for the NINDS, including $204 million for stroke. Some challenges and 
opportunities follow:
    Strategic Stroke Research Plan.--As a result of congressional 
report language during the fiscal year 2001 appropriations process, the 
NINDS convened a Stroke Progress Review Group. Their report serves as a 
blueprint for a long-range strategic stroke research plan. They 
identified serious gaps in stroke knowledge and outlined 5 research 
priorities and 7 resource priorities that would spur stroke research. 
But, more funding is needed to continue to implement this plan.
    Emerging Stroke Risk Factors.--Although more Americans are 
controlling major stroke risk factors, such as high blood pressure and 
smoking, the number of stroke victims continues to rise. Scientists are 
defining new 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 
damaging arteries, and the long-term effects of 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. But, with the increased number of strokes, and with 
the disparities in stroke treatment, 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 vital 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, a group of 
organizations devoted to fighting stroke, we work with the NINDS to 
increase public awareness of stroke symptoms and the need 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 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 providers about stroke.
   research in other nih institutes benefit heart disease and stroke
    Research seeking to prevent and find better treatments for heart 
disease, stroke and other cardiovascular diseases is supported by other 
NIH entities like 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 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. They help 
develop 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 for an appropriation of 
$443 million for the AHRQ to advance health care quality, cut 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 financial burden of disease. Resources must be made available to 
bring research to places where heart disease and stroke strike--our 
towns and neighborhoods. Setting the pace on prevention, the CDC builds 
a bridge between what we learn in the lab and translates findings into 
programs in the communities where we live. We advocate an fiscal year 
2005 appropriation of $8.1 billion for the CDC, with a $340.5 million 
increase for state-based chronic disease prevention and health 
promotion programs.
    Within that figure, we support an appropriation of $80 million for 
the CDC's Heart Disease and Stroke line to better expand, intensify and 
coordinate prevention activities against these diseases such as 
enhancing the State Heart Disease and Stroke Prevention Program, and 
the Paul Coverdell National Acute Stroke Registry. It will also allow 
the CDC to start a heart attack and stroke signs health communications 
campaign, public and health care provider education, and invest in 
standardized methodology on lipid and other measurements. A Heart and 
Stroke Division, with ample resources and capacity, would heighten 
CDC's efforts on these diseases.
    Thanks to this Committee's support since fiscal year 1998, the 
CDC's State Heart Disease and Stroke Prevention Program covers 33 
states. But, only 11 states receive funding to actually implement 
programs to help prevent and control heart disease and stroke. The 
remaining 22 states have completed program planning and are prepared 
and waiting to implement a state-tailored program. This initiative 
allows states to design and/or implement programs to meet state 
specific needs to prevent heart disease, stroke and other 
cardiovascular diseases. 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 2004 funding, the CDC can only elevate one state from 
planning to program implementation.
    An appropriation of $80 million would allow the CDC to expand the 
number of states participating in this State Heart Disease and Stroke 
Prevention Program by 5 states to conduct a state-tailored heart 
disease and stroke prevention plan, and elevate 10 more states from the 
planning stage to program implementation and support the other 
currently funded states. Also, the CDC would enlarge the Paul Coverdell 
National Acute Stroke Registry. This registry tracks and improves 
delivery of acute stroke care--care that can mean the difference 
between a fairly normal life and long-term disability. The CDC 
developed and conducted registry prototypes from 2001-2003 and will 
begin to fund three state registries in fiscal year 2004.
    We recommend the following fiscal year 2005 funding levels for the 
following CDC programs:
  --$210 million for the Preventive Health and Health Services Block 
        Grant;
  --$70 million for the Nutrition, Physical Activity and Obesity 
        Program;
  --$125 million for the Youth Media Campaign;
  --$82.4 million for the School Health Education Program; and
  --$130 million for the Office of Smoking and Health.
              health resources and services administration
    About 340,000 Americans die each year from sudden cardiac arrest. 
About 95 percent of the victims die before reaching a hospital. AEDs 
are small, easy-to-use devices that can shock a heart back into normal 
rhythm and restore life. The Rural Access to Emergency Devices Act and 
the Community Access to Emergency Defibrillation Act authorize funds 
for state and local governments to start AED programs. States, cities 
and towns nationwide eagerly await funds from these vital public health 
service grant awards, with available funds far below state requests. An 
appropriation of $45 million is required to support these authorized 
programs.
                        department of education
    Physical inactivity is a key risk factor for heart disease and 
stroke. Yet, our youth have fewer chances for physical education. 
Congress has been appropriating money for the Carol M. White Physical 
Education for Progress (PEP) Act to provide funding for school-based 
physical education programs, which teach life-long physical activity 
habits and thus prevents diseases, like heart disease and stroke. We 
advocate for an 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.
                                 ______
                                 
Prepared Statement of Living Cities: The National Community Development 
                               Initiative
    Thank you, Senator Specter and Subcommittee members, for the 
opportunity to share with you the views of Living Cities: The National 
Community Development Initiative on the administration's fiscal year 
2005 budget request for the Office of Community Services within the 
U.S. Department of Health and Human Services (HHS.)
    Living Cities is a nonprofit consortium of 15 major financial and 
philanthropic organizations working to increase the vitality of cities 
and improve the lives of people in distressed urban neighborhoods. 
These organizations are AXA Community Investment Program, Bank of 
America, the Annie E. Casey Foundation, J.P. Morgan Chase & Company, 
Deutsche Bank, Fannie Mae Foundation, Robert Wood Johnson Foundation, 
W.K. Kellogg Foundation, John S. and James L. Knight Foundation, John 
D. and Catherine T. MacArthur Foundation, the McKnight Foundation, 
Metropolitan Life Insurance Company, Prudential Financial, the 
Rockefeller Foundation, and Surdna Foundation.
    In addition, HHS and the U.S. Department of Housing and Urban 
Development (HUD) are investment partners in Living Cities. HHS and HUD 
representatives attend Living Cities meetings, but are not voting 
members of the organization. Neither HUD nor HHS had any involvement in 
the preparation of this testimony, and the testimony does not represent 
either agency's views in any way. This testimony also does not 
represent the views of individual member organizations in Living 
Cities. This testimony is entirely and exclusively on behalf of Living 
Cities, a stand-alone charitable organization.
    Started as NCDI in 1991, Living Cities has worked with the Local 
Initiatives Support Corporation (LISC) and The Enterprise Foundation to 
make strategic investments in the work of nonprofit community 
development corporations (CDCs) in 23 cities--Atlanta, Baltimore, 
Boston, Chicago, Cleveland, Columbus, Dallas, Denver, Detroit, 
Indianapolis, Kansas City, Los Angeles, Miami, Minneapolis-St. Paul, 
Newark, New York City, Philadelphia, Phoenix, Portland, Oregon, San 
Antonio, San Francisco Bay Area, Seattle, and Washington, D.C.
    The results are tangible. Improvements can be seen in transformed 
neighborhoods--new homes, places of employment, and the visible 
presence of stronger community organizations. The Living Cities 
investment of $254 million has directly supported the creation of 
almost 20,000 affordable housing units and 1.7 million square feet of 
commercial, industrial and community facilities developed by CDCs, and 
has leveraged $2.2 billion, a leverage ratio of nearly 9:1. The federal 
investment in the Living Cities initiative over the first decade was 
$36 million, achieving a leverage ratio of 61:1 for these federal 
dollars.
    Based upon our experience, we find that urban neighborhoods have 
the workers, purchasing power, and physical assets ready to be tapped 
through a combination of public and private investments. That is why 
our collaborative is doubling our commitments in the current decade, 
increasing our investments by an additional half-billion dollars 
between 2001 and 2011.
                      importance of accountability
    We believe that lessons can be drawn from Living Cities' experience 
of investing in distressed urban neighborhoods, useful lessons for 
policy and funding decisions to strengthen distressed communities 
nationwide. Like this Subcommittee, we demand individual accountability 
and results from the entities that receive Living Cities resources. 
Since our inception, we have engaged outside experts to take a hard 
look at what CDCs are achieving. We are glad to share the results of 
these studies with the Subcommittee.
    Beyond our own research, two federal agencies, the General 
Accounting Office and the Office of Management and Budget, this year 
applauded the successful use of federal NCDI/Section 4 funds to 
strengthen CDCs by improving their internal management, increasing 
their capacity, and widening their impact.
          hhs/ocs: a vital partner in community revitalization
    The history of CDCs is well known. CDCs began forming in the 1960s 
to address the failure of mainstream government and market structures 
to provide decent housing, safe neighborhoods, good jobs, and resident 
participation in planning for their own future. From the outset of the 
CDC movement, communities that were served ranged from a few square 
blocks in a single urban neighborhood to multi-county rural areas. 
Target populations have been equally diverse--including all races and 
ethnic groups, farmers, immigrants, welfare recipients, small business 
owners, juveniles, the homeless. What has been consistent among CDCs is 
that each one has come from and represents a community, and each one 
has harnessed resources from both the public and private sectors of the 
economy.
    Different administrations have lent their support to CDCs over the 
decades. During the 1960s, CDCs were viewed as complementary to 
government. Their role was to encourage neighborhood development, 
promote anti-poverty strategies, and deliver social services--with 
generous federal support provided to fuel them. During the Reagan 
years, CDCs came to be seen by some as alternatives to government. CDCs 
developed stronger alliances with state and local governments and with 
private sector partners. These alliances expanded the impact of CDCs. 
By the 1990s, CDCs were viewed as playing a dual role--as complementary 
to government and as enhancements to markets.
    As you know, the Department of Health and Human Services, Office of 
Community Services, Community Services Block Grant Act Secretary's 
Discretionary Fund for Community Economic Development is a significant 
program of federal assistance to CDCs. This program has been a resource 
that is critical to the success of community development, a resource 
that needs to continue.
    We focus here on the Discretionary Grant Program of the Office of 
Community Services, because this program has stood the test of time and 
has proven to be very successful in using federal dollars to leverage 
private sector investments to create jobs through economic development 
projects sponsored by CDCs. This success is illustrated by the 
following examples of economic development projects selected from some 
of the CDCs and cities in which Living Cities invests.
Asociacion de Puertorriquenos en Marcha, Inc. in Philadelphia
    Received a $500,000 grant from the Office of Community Services 
that leveraged investment to support $5,100,000 in total development 
costs for the Gateway Plaza in Philadelphia.
    The OCS grant created 125 jobs.
Abyssinian Development Corporation in New York City
    Received a $500,000 grant from the Office of Community Services 
that leveraged investment to support $16,000,000 in total development 
costs for the Pathmark Supercenter.
    The OCS grant created 275 jobs.
Northeast Neighborhood Development in Cleveland
    Received a predevelopment grant of $75,000 to perform market and 
business studies on the potential for improving the retail climate of a 
key intersection in its community.
    While the program is still underway, the OCS grant has already 
created 10-15 jobs.
Vermont Slauson Economic Development Corporation in Los Angeles
    Received a $450,000 grant from the Office of Community Services 
that leveraged investment to support $1,200,000 in total development 
costs for the Ranch Markets project.
    The OCS grant created 70 jobs.
Bethel New Life in Chicago
    Received a $700,000 grant from the Office of Community Services 
that leveraged investment to support $3,225,000 in total development 
costs for the Material Recovery Facility project.
    The OCS grant created 145 jobs.
Jane Addams Resource Corporation in Chicago
    Received a $250,000 grant from the Office of Community Services 
that leveraged investment to support $1,100,000 in total development 
costs for the 4422-36 North Ravenswood project and a $300,000 OCS grant 
that leveraged investment to support $1,000,000 in total development 
costs for the 4410 North Ravenswood project.
    These OCS grants together created 55 jobs.
    In order to build on such successful public and private investments 
in distressed urban neighborhoods, Living Cities finds it to be 
critically important to continue investment in job creation for low-
income people and to continue funding at the highest possible level for 
programs that have a long history of success. As we have committed to 
doubling our investment in the current decade, we urge the Subcommittee 
to support a commensurate increase in funding for the OCS Discretionary 
Grants Program. We also offer to work with the Subcommittee to explore 
ways in which the OCS grants can foster further public/private 
cooperation so as to leverage additional private investment by Living 
Cities.
    The work that has been done over the past decade to strengthen CDCs 
has increased their capacity to participate in the OCS Discretionary 
Grants Program. CDCs are providing the infrastructure to achieve 
economic and social redevelopment of low-income neighborhoods. CDCs 
take the risks as early investors, providing seed money and working 
capital for community development projects that become catalysts for 
further private investment. They encourage the participation of 
residents in the redevelopment of their communities, prepare the 
workforce for employment, develop local businesses and provide capital 
and technical support to other businesses in their target areas. CDCs 
secure funding for these activities from government, financial 
institutions, corporations, foundations and other individual funders
    Living Cities is supporting CDCs in these activities through our 
investments in their work and by supporting research on urban markets, 
including the collection of data on which business and investment 
decisions are based. Based upon our experience, we see that even very 
troubled neighborhoods can revive when community leaders, government, 
and the private sector work together.
    We are optimistic about the future of America's cities, given the 
very real progress we see. In the past decade, the population of the 
nation's largest 50 cities grew by nearly 10 percent. This was 
accompanied by a rise in city incomes that outpaced the national 
average (7 percent versus 4 percent, respectively) and an increase in 
housing units, homeownership and mortgage lending. At the same time, in 
certain urban areas concentrated poverty fell 24 percent in the last 
decade and urban crime decreased. Inner cities have become hubs of 
economic activity, with annual retail spending power of $85 billion or 
the equivalent of 7 percent of U.S. retail spending. Business 
investment has returned to some urban markets, bringing goods, services 
and job opportunities. This progress bodes well for the economic 
strength of cities, their regions, and the nation, economic strength 
that we believe depends upon strong economies in urban neighborhoods.
                        pilot cities initiative
    Now in the second decade, Living Cities funders have challenged 
themselves to do more. First, we have committed to investing an 
additional $500,000,000 in the current decade. We also are building on 
the successes of the first 10 years by creating a new investment model, 
the Pilot Cities Initiative in Baltimore, Chicago, Miami and the Twin 
Cities of Minneapolis and St. Paul. This initiative is creating new 
ways for Living Cities investment partners and other funders to align 
resources over a sustained period of time in order to have a greater 
positive impact in distressed communities.
    Through this new, more powerful model, funders will engage in 
collaborative efforts to develop healthier neighborhoods by enhancing 
the linkages between inner city neighborhoods and their residents and 
the larger economies of their cities and their regions. This initiative 
also will encourage CDCs to develop new relationships with philanthropy 
and to expand the impact of economic development by working more 
closely with other institutions that are serving the same 
neighborhoods.
                               conclusion
    Despite the significant gains made in Living Cities communities 
during the first decade and our ambitious plans for the next, we have 
learned that future gains will be severely limited without additional 
federal investment. We respectfully request that the Subcommittee 
consider:
  --Increasing the current funding level for the OCS Discretionary 
        Grants Program by an amount that Living Cities will match;
  --Encouraging the use of grants to attract further private investment 
        and foster more public/private partnerships; and
  --Allowing funding dollars to be used to collect data that document 
        the opportunities in the workforce and the purchasing power of 
        lower-income communities, with OCS serving as the lead federal 
        agency in gathering and making information accessible to people 
        who make business and investment decisions.
    It will take a concentrated national effort, but we are determined 
to see cities across the country reach and sustain healthy status in 
our time, a level that is worthy of the richest society in the history 
of humankind. With the support of private and public resources, 
including the OCS Discretionary Grants Program, CDCs can continue their 
significant work towards the goal of economic well-being, a goal that 
includes job opportunities for low-income people.
    Thank you for this opportunity to present our views regarding this 
important program to the Subcommittee.
                                 ______
                                 
  Prepared Statement of the American Public Transportation Association
                              introduction
    Mr. Chairman, thank you for the opportunity to submit a statement 
for the record to the Subcommittee on Labor, Health and Human Services 
and Education regarding the fiscal year 2005 Labor, Health and Human 
Services and Education Appropriations Bill.
    We submit our views to the Subcommittee to make the point that not 
only can public transportation make a critical difference in how people 
get to jobs, health care, training and other social services, but can 
also provide significant cost efficiencies in the process. It is our 
hope to work with committee staff in developing report language to 
highlight this important issue.
                               about apta
    The American Public Transportation Association (APTA) is a 
nonprofit international association of over 1,500 public and private 
member organizations including transit systems and commuter rail 
operators; planning, design construction and finance firms; product and 
service providers; academic institutions; transit associations and 
state departments of transportation. APTA members serve the public 
interest by providing safe, efficient and economical transit services 
and products. Over 90 percent of persons using public transportation in 
the United States and Canada are served by APTA members.
  the efficiencies of transportation coordination are receiving great 
             attention from congress and the administration
    Mr. Chairman, the current budgetary climate and the emphasis it has 
brought on doing more with limited resources provides a fitting context 
for our focus on of transportation coordination. We believe that 
relatively minor legislative changes based on simplicity and common 
sense can provide for necessary consistencies across programs to make 
transportation coordination work.
    Recognizing the efficiencies and additional riders and resources 
that are possible through improved coordination, APTA has long believed 
in the potential of greater coordination between human service 
providers and transportation providers. We have long seen the potential 
for coordinated transportation to lower the costs of services to 
taxpayers, enhance the scope and quality of service to customers, and 
to avoid the duplicate purchase and use of equipment.
    In May 2003, the House Committee on Transportation and 
Infrastructure and the House Committee on Education and the Workforce 
held a joint hearing to examine both the potential of and the obstacles 
to coordination. One Member at that hearing noted that enhancing the 
coordination of human services and transportation had been a topic of 
interest to Congress since the 1970s. But, when all was said and done, 
much more was said than done.
    The joint House hearing heard from the General Accounting Office 
(GAO) that there are some 62 federal programs that spend money on 
transportation. The GAO also found that leadership on coordination was 
lacking in that coordination seemed to be on everyone's list of things 
to do but nowhere near the top of anyone's list. There was a Federal 
Coordinating Council but it rarely met. The situation at the federal 
level was replicated at the state level. Where states had leadership on 
coordination through coordinating councils often created by the 
governors, coordination was often impressive. Where that was not the 
case, coordination was simply not happening. Like the tango, it takes 
more than one state or federal agency to coordinate. Those who took 
coordination seriously often found they were ``playing catch with 
themselves.''
    In our observation, Congress and the Administration are now taking 
coordination seriously. Department of Transportation Secretary Norman 
Mineta and Federal Transit Administrator Jennifer Dorn are reaching out 
with some success to get more federal agencies on the dance floor. With 
the launching of the Department of Transportation's ``United We Ride'' 
initiative, the Department of Health and Human Services, the Department 
of Labor, the Department of Education, and other federal agencies are 
beginning to recognize best practices at the state level and make 
resources available to enhance state performance. President Bush, to 
his great credit, has issued an Executive Order calling on federal 
agencies to assess their roles in coordination and report back to the 
White House in 1 year on progress they are making to enhance the 
coordination of transportation programs.
  congress is addressing transportation coordination on several fronts
    Several pending bills contain language that would bolster the 
coordination of federal transportation programs. APTA is supportive of 
these efforts.
    Pending bills to reauthorize the Federal Transportation Equity Act 
for the 21st Century (TEA 21) contain numerous provisions that will 
enhance transportation coordination, including allowing funding from 
human service programs to be used as a match for FTA programs so long 
as programs are coordinated, broadening the eligibility guidelines for 
Job Access and Reverse Commute (JARC) funding, recognizing Mobility 
Management as an eligible program expense, and requiring local 
certification plans for the New Freedom, JARC, and Elderly and Disabled 
programs.
    As part of the pending welfare reform legislation, the Senate 
Finance Committee has approved an amendment supported by APTA calling 
upon states that use Temporary Assistance for Needy Families (TANF) 
funds for transportation purposes to certify that they have consulted 
with transportation agencies in the provision of such services. It 
seems to be a simple common sense matter, but it often doesn't happen. 
Such certification will make a requirement of what is now often an 
afterthought. The House-passed welfare reform bill (H.R. 4) contains an 
important provision in its TANF program that would treat transportation 
subsidies as ``nonassistance'' for purposes of the Act and therefore 
need not be discontinued when a person exhausts their eligibility for 
public assistance. Like childcare support, transportation aid is 
essential to those who not only want to get a job, but also those 
striving to retain their job.
    Similarly, there are provisions in the Senate's version of the 
Workforce Investment Act that call on state and local workforce 
planners to account for how people are to get to training and available 
jobs. It makes as much sense to coordinate training with available 
transportation as it does to link training to available employment. 
Along with childcare, the ability to get to a job efficiently is often 
the factor that determines whether a person can get and retain 
employment.
    It is APTA's hope that significant progress can be made in the next 
year as both Congress and the Executive Branch focus attention on 
replacing old habits with new habits.
   public transportation provides affordable and efficient access to 
                              health care
    Following the old adage, ``follow the money,'' we note that the GAO 
identified a major source of transportation spending in the Medicaid 
program. Close to $1 billion is spent on transportation to assist 
Medicaid clients. APTA members in Connecticut and Florida have had some 
success offering mainline transit service to those for whom it is 
appropriate through a Medicaid Pass Program. Medicaid clients see their 
transportation options enhanced at the same time the Medicaid program 
sees its costs lowered. Transit operators experience an increase in 
ridership while being reimbursed by the Medicaid program. Such programs 
can be a win/win/win situation for those who need services, those who 
pay for them, and those who provide the service.
    Public transportation has already demonstrated its ability to 
effectively provide non-emergency transportation to health care 
services when given a chance. In 1997, the Healthcare Financing 
Administration estimated it was losing $1.2 billion annually in non-
emergency medical transportation subsequently states began to 
coordinate services with local transit systems and by 2000 20 percent 
of the nation's Medicaid rides were on public transit.
    While lack of coordination between providers of transportation 
assistance programs for the elderly and disabled and public 
transportation systems is not a new problem, the need for these 
services will continue to grow. According to a recent FTA study, 32 
million senior citizens rely on transit as their driving ability 
decreases; 27 million Americans with disabilities depend on transit to 
maintain their independence; and 37 million people who live below the 
poverty line and cannot afford to drive rely on transit to get to work. 
The population of elderly transit users is expected to rise, growing 
nearly four times faster than the general population between 2010 and 
2030; yet according to the AARP, more elderly people now live in 
suburban settings that lack transit options than ever before.
    Public transportation has worked hard to improve its service. 
Between 1990 and 1999, the percentage of wheelchair accessible buses 
has increased dramatically. Systems continue to update their vehicles, 
including trains and buses, to ensure that individuals with 
disabilities can use their service. With access available to 
populations served by HHS and other social programs across the country, 
public transportation is clearly in a position to help these people and 
save taxpayer dollars right now.
       public transportation delivers people from welfare to work
    Similar to its success in helping the elderly and disabled, public 
transportation is already at work helping the population of low-income 
workers and job seekers such as TANF clients by providing low-cost, 
efficient transportation services.
    Many welfare recipients do not own cars and must rely on public 
transportation to get to work. And while most welfare recipients live 
in central cities, most newly created jobs are in the suburbs. Public 
transportation has been successful in many cases in providing 
transportation options to these job seekers, especially under the JARC 
program, but barriers remain. For instance, Fort Worth's transportation 
authority, The T, has noted that it has difficulty coordinating various 
sources of funding to provide transportation service that gets workers 
from the central city to the suburbs because local service providers 
are required to track separate data from both the Department of Labor 
and the Department of Housing and Urban Development.
                               conclusion
    Mr. Chairman, the public transportation community stands ready to 
provide a cost efficient, easy-to-use and effective solution to the 
increased demand for transportation options for communities served by 
federal programs such as TANF. The U.S. Department of Transportation is 
already required to coordinate with HHS, but it needs to improve 
coordination with HHS as well as with other agencies at all levels of 
government. Many states and local governments are excelling at this 
process. Millions of additional federal dollars could be saved by 
requiring all states to follow their lead.
    Enabling effective coordination between all federal agencies and 
the DOT requires statutory changes to provide the Coordinating Council 
with authority to require recipients of federal funds at all levels to 
work together. Taking advantage of the TEA 21 and TANF reauthorizations 
to require state and local governments that receive TANF and JARC funds 
to coordinate their services would be an excellent first step. This 
will put the experience and resources of transit to use to effectively 
serve our disadvantaged populations.
    Mr. Chairman and Members of the Committees, we urge you to take 
public transportation service and the cost efficiencies it provides 
into consideration as you mark up your fiscal year 2005 appropriations 
bill. We would be pleased to work with your staff in developing report 
language in that regard.
    In closing, APTA would like to urge this Subcommittee to remain 
vigilant as you monitor the progress of executive agencies and the 
Coordinating Council in the next year. Progress is being made but there 
is much more to do.
    Thank you.
                                 ______
                                 
     Prepared Statement of the Coalition of Northeastern Governors
    The Coalition of Northeastern Governors (CONEG) is pleased to 
provide this testimony for the record to the Senate Subcommittee on 
Labor, Health and Human Services, and Education regarding fiscal year 
2005 appropriations for the Low Income Home Energy Assistance Program 
(LIHEAP). The Governors appreciate the Subcommittee's consistent 
support for the LIHEAP program, and we recognize the difficult 
decisions facing the Subcommittee in this time of severe fiscal 
constraints. However, in light of sharply higher home energy prices, we 
request the Subcommittee to provide $3 billion for LIHEAP in regular 
fiscal year 2005 funding and $3 billion in advance appropriations for 
fiscal year 2006.
    LIHEAP is a vital tool in making home energy more affordable for 
almost 5 million of the nation's very low-income households--the 
elderly and disabled on fixed incomes and families with young children. 
Recent survey data compiled by the National Energy Assistance 
Directors' Association (NEADA) provide a glimpse of the difficult 
choices made by low-income households and the strong, ongoing need for 
LIHEAP assistance. The percentage of income spent on total home energy 
by these low-income 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. Even after taking constructive actions to reduce their 
home energy use, too many low-income residents are forced to make 
dangerous choices between heating their homes, paying the full rent or 
mortgage, seeking medical attention, or purchasing food or vital 
medications. The NEADA survey found that an estimated 38 percent of 
LIHEAP recipients went without medical or dental care; approximately 28 
percent did not make a rent or mortgage obligation; 30 percent did not 
fill a prescription or take the full dosage; and 21 percent became sick 
because the home was too cold.
    The rise in winter heating fuel prices hits 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.
    Rapidly rising energy prices, the very cold winter conditions in 
many parts of the country, and the continued high unemployment among 
low-wage workers continue to put heightened demand on the states' 
already stretched LIHEAP programs. In fiscal year 2004, states expect 
to serve an estimated 4.8 million low-income households with LIHEAP 
assistance, an increase of 6 percent over the 2002-2003 period. 
However, the number of low-income households eligible for LIHEAP 
assistance increased by a similar 6 percent--to approximately 34.6 
million households. In short, in spite of the welcomed increase in 
LIHEAP funding, only a fraction--approximately 15 percent of eligible 
households--continue to be served at current LIHEAP funding.
    An increase in the regular LIHEAP appropriation to $3 billion for 
fiscal years 2005 and 2006 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, leaving little or no 
resources for cooling programs this summer; or 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 2005 LIHEAP 
appropriations at the $3 billion level and the enactment of advance 
fiscal year 2006 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 American Public Power Association
    The American Public Power Association (APPA) is the national 
service organization representing the interests of over 2,000 municipal 
and other state and locally owned utilities in 49 of the 50 states (all 
but Hawaii). Collectively, public power utilities deliver electricity 
to one of every seven electric consumers (approximately 40 million 
people), serving some of the nation's largest cities. However, the vast 
majority of APPA's members serve communities with populations of 10,000 
people or less.
    We appreciate the opportunity to submit this statement supporting 
funding for the Low-Income Home Energy Production Assistance Program 
(LIHEAP).
    APPA has consistently supported an increase in the authorization 
level for LIHEAP to $3.4 billion annually--an increase that was 
embodied in the stalled Energy Policy Act and has also been advanced 
more recently in the Senate's version of the Poverty Prevention and 
Reduction Act, a bill that has not yet been considered in the House. In 
the absence of final action on an increased authorization level for the 
program, the Administration's request of $2 billion for fiscal year 
2005 ($1.8 billion in state block grant funding and $200 million in 
emergency funding) is a good start. However, APPA believes that the 
Subcommittee should consider appropriating the $3.4 billion necessary 
in fiscal year 2005 to more fully meet the energy needs of low-income 
households.
    APPA is proud of the commitment that its members have made to their 
low-income customers. Many public power systems have low-income energy 
assistance programs based on community resources and needs. Our members 
realize the importance of having in place a well-designed low-income 
customer assistance program combined with energy efficiency and 
weatherization programs in order to help consumers minimize their 
energy bills and lower their requirements for assistance. While highly 
successful, these local initiatives must be coupled with a strong 
LIHEAP program to meet the growing needs of low-income customers. In 
the last several years, volatile home-heating oil and natural gas 
prices, severe winters, high utility bills as a result of the western 
electricity crisis, and the effects of the economic downturn have all 
contributed to an increased reliance on LIHEAP funds.
    Also when considering LIHEAP appropriations this year, we encourage 
the Subcommittee to provide advanced funding for the program so that 
shortfalls do not occur in the winter months during the transition from 
one fiscal year to another. LIHEAP is one of the outstanding examples 
of a state-operated program with minimal requirements imposed by the 
federal government. Advanced funding for LIHEAP is critical to enabling 
states to optimally administer the program.
    Thank you again for this opportunity to relay our support for 
increased LIHEAP funding for fiscal year 2005. We look forward to a 
favorable outcome.
                                 ______
                                 
    Prepared Statement of the Meals On Wheels Association of America
    Mr. Chairman and Members of the Subcommittee, we are Enid A. Borden 
and Margaret B. Ingraham, Chief Executive Officer and Director of 
Policy and Legislation, respectively, of The Meals On Wheels 
Association of America (MOWAA). The Association represents local 
community-based meal programs from every state that provide congregate 
and home-delivered meals and other nutrition services to older persons 
in need. It is on behalf of MOWAA, its member programs, and the 
literally hundreds of thousands of frail, elderly and at-risk 
individuals that they serve that we present this testimony.
    As part of the appropriations process in which this subcommittee 
engages every year, you doubtless hear from hundreds, probably 
thousands of individuals and organizations representing programs funded 
through the enormous bill under your purview. Each comes to advocate 
for a specific project or program and to make the case as to why that 
program merits a particular level of federal financial support in the 
next fiscal year. In that regard, MOWAA is no different from the others 
from whom you have heard. But in other ways--significant ones that we 
will enumerate briefly--MOWAA, or rather the senior meal programs that 
are our members--are significantly different.
    Please allow us the opportunity to put our request in an historical 
and human perspective. In 1972 when it reauthorized the Older Americans 
Act, Congress included senior nutrition programs among the services 
funded under the Act. Today, ``Meals On Wheels,'' as those programs 
have come to be popularly called, are perhaps the most widely 
recognized and universally lauded of Older Americans Act programs. It 
should come as no surprise to you that we also believe they are the 
most important. Why? The answer is simple. Because food is fundamental 
to life and health and psychological and emotional well-being. There is 
no arguing that fact. All of us eat regularly, generally 21 meals per 
week and we even may sneak a snack here or there when we get hungry. 
But many of America's most vulnerable citizens, the frail and at-risk 
elderly, have no ability to shop for or to prepare meals for 
themselves. For them, home-delivered meal programs are a virtual 
lifeline. In some cases, they are the only source of nutritious food 
that a senior has; and even then, most programs have the resources to 
provide only five meals each week.
    Last year, according to the Administration on Aging over 253 
million meals were served with Older Americans Act funds. That is 
impressive indeed. But the sad reality on the underside of that success 
is that hundreds of thousands of equally needy seniors were not served. 
A conservative estimate is that 4 out of every 10 home-delivered meal 
programs have waiting lists. And currently, the old-old age group 
(defined as 85 and older) is the fastest growing cohort in the U.S. 
population. So, simply stated, if appropriations levels are not 
increased, and increased substantially, the unspeakable will occur. 
That is, even larger numbers or frailer individuals will be going 
hungry. Mr. Chairman and members of the subcommittee, we believe that 
is unacceptable in this the wealthiest nation on the planet.
    Earlier we mentioned historical context. Let me return to that. In 
fiscal year 1992, 20 years after the establishment of OAA nutrition 
programs, the federal financial commitment was just over $607 million. 
(That figure represents the sum of Title III C-1, III C-2 and NSIP 
(then called USDA/NPE)). For fiscal year 2004, the President has 
requested $719 million. Yes, that is an increase; but it is a grossly 
inadequate one. For during the intervening years since 1992, other 
important factors have changed. First, there is inflation. Then there 
is the population shift, which has dramatically increased the number of 
individuals needing assistance with nutrition services. In 1992 there 
were 42.7 million individuals age 60 and older in the United States, 
and approximately 3.3 million of those were 85+. In this year (2004) 
the number of those 85+ is over 4.7 million. That, by any standard, is 
astounding growth. And it is growth that has gone largely 
uncompensated. Here is what we mean by that.
    We asked one of this country's most distinguished actuaries to look 
at these numbers, to look at population growth and inflation (by 
applying the annual CPI-U) and then to produce an ``equivalent'' 
appropriation level. That is, we asked him to calculate what the 
federal commitment to each elder was in fiscal year 1992 and then to 
determine what funding levels these senior meal programs should have 
received in fiscal year 2004 to ensure parity with 1992. Why parity? 
Because we know that you agree that today's elders are just as 
important a part of our society today as they were 12 years ago. 
Today's elders--your parents and grandparents and perhaps even siblings 
and neighbors, certainly your constituents--are as deserving as those 
who came before them of receiving senior nutrition program services 
when they can no longer provide meals for themselves. Had you provided 
parity in 2004 with 1992, based on the changes in the CPI-U and the 85+ 
population alone, the funding level would have been approximately 
$1.158 billion, an almost 61 percent increase over the $719 million 
being requested by the Administration for the next fiscal year. This 
year's request, in fact, is less than the 1992 enacted level for 
Nutrition Services Incentive Program (NSIP, formerly USDA); it is less 
than the 2002 enacted level for Title III C-1; and it is the same level 
as the fiscal year 2003 enacted level for Title III C-2. In other 
words, overall the request is much less than adequate for us to keep 
faith with the older population that depends on local community-based 
meal programs in every State in this great country. We are not so 
unrealistic as to believe that we can achieve parity in 1 year, 
although we do believe our case has merit. Mr. Chairman and members of 
the subcommittee, the Meals On Wheels Association of America does 
urgently and sincerely request that you increase funding for senior 
meal programs by no less than 10 percent for each line item over last 
year's levels, to approximately $786 million combined.
    The year 2005 will mark the 40th Anniversary of the Older Americans 
Act, and we can think of no more fitting way to recognize the 
invaluable contribution that OAA programs have made in the lives of 
older Americans and to demonstrate Congress' continued commitment to 
elders than by adopting funding levels that will help local programs 
serve those in need.
    Before we close we do want to make one more point, that is often 
overlooked when it comes to senior nutrition programs. These senior 
meal programs that receive funding through the Older Americans Act 
exemplify how effectively public-private partnerships can serve 
citizens in need. For that is what these programs are: public-private 
partnerships that reflect the unique needs and characteristics of the 
communities in which they operate and that rely on a number of funding 
sources. Federal dollars are only a portion of the funds on which these 
programs rely in order to operate. But they are a critical part, for 
they enable programs to leverage money from a variety of other sources, 
such as States and local governments, foundations, corporations and 
individuals. In the home-delivered program, for example, each $1 in 
federal funds leverages $3.35 from other sources. So even a modest 
increase in funding of 10 percent could assist in a major way in 
meeting unmet need.
    As you consider our request, you may want to keep in mind in whose 
behalf MOWAA is making it. Each and every one of these ``frail, 
homebound individuals'' is unique, just as you and I, so it is 
impossible to give you a description that covers them all. But here is 
a simple profile: the average Meals On Wheels recipient is an elderly 
woman in her very late seventies or eighties; she is more than twice as 
likely as her contemporaries to live alone, apart from family and 
friends. She is likely to be functionally impaired (have trouble 
walking, for example) and have three or more diagnosed chronic health 
conditions. In addition, she probably has an income below 200 percent 
of poverty. Whatever the reason, she cannot shop, cook, or prepare 
meals for herself. In other words, she relies on Meals On Wheels 
programs to ensure she gets proper nutrition. And without that, she 
would probably be at risk of being forced to move out of her home 
prematurely into an institutional care facility. These folks reside in 
cities and suburbs and rural communities across America.
    Thank you for the opportunity to bring these issues to your 
attention. Again, on behalf of MOWAA, local meal programs across 
America, and, most important, the at-risk and frail seniors that turn 
to them for meals and other nutrition services, we ask that you give 
serious consideration to renewing the commitment of your colleagues in 
previous Congresses and to increasing funding to a level that moves 
resolutely toward a level that is commensurate with that of a decade 
ago. A 10 percent increase for fiscal year 2005 is a good first step.
                                 ______
                                 
 Prepared Statement of the National Association of Nutrition and Aging 
                           Services Programs
    Chairman Specter and Ranking Member Harkin: The National 
Association of Nutrition and Aging Services Programs (NANASP), a 
professional membership organization representing the interests of 
members at all levels of the aging network dedicated to providing 
quality nutrition and other direct services for older Americans, 
recommends an increase of 10 percent for the three Older Americans Act 
(OAA) nutrition programs as part of the fiscal year 2005 appropriations 
bill for the Department of Health and Human Services under your 
jurisdiction.
    This position is taken in concert with the position of the 50-
member Leadership Council of Aging Organizations (LCAO) of which NANASP 
is a member. LCAO supports a 10 percent across the board increase for 
all Older Americans Act programs.
    NANASP's focus is the congregate and home delivered meals programs 
and the Nutrition Services Incentive Program, since our more than 800 
members nationally work on the front lines every day providing seniors 
with nutrition and related services.
    The President's budget called for a slight increase in funding of 
$4.35 million for the three OAA nutrition programs. However, the amount 
of the increase is only 0.6 percent of the total funding and does not 
even come close to inflation, estimated at 3 percent over the past 
fiscal year. In fact, the nutrition programs are entering a second 
decade of a funding deficit which is eroding the effectiveness of the 
programs for those being served. Whereas inflation has increased by 
44.45 percent since 1990, funding for the OAA has only increased by 
24.4 percent. Also since 1990, funding has only increased 9.8 percent 
for the congregate nutrition program.
    Administration data for fiscal year 2002 indicates that while the 
OAA nutrition programs are serving more individuals, they are serving 
fewer meals to these individuals. This defeats a main benefit of the 
program which is to provide eligible seniors with a minimum of one-
third of their required daily dietary allowance. The reduction in meals 
can present genuine hardships to the seniors who are served, especially 
those in the greatest economic need who are to be targeted for service 
under the Older Americans Act.
    Furthermore, data provided by AARP forecasts that nearly 5 million 
meals will be cut from both the congregate and home delivered meals 
programs if no adjustments are made to the President's fiscal year 2005 
budget. The question to ask is how do these meals get replaced?
    A modest 10 percent increase in the nutrition programs constitutes 
about $71 million. This will help these programs to maintain services 
to their existing seniors thus avoiding the need for new or expanded 
waiting lists. Older adults waiting for basic services often wind up on 
nursing homes and are at risk for losing their homes and independence.
    The Older Americans Act nutrition programs are a proven success 
story with more than 30 years of serving seniors in your state and 
throughout the country. Funds provided for these programs are 
investments in promoting and maintaining the independence of seniors. 
The Older Americans Act nutrition programs are more than just a meal. 
These are preventive programs: they help avert malnutrition and control 
chronic conditions such as diabetes, and through socialization and 
other individual contact help keep seniors from becoming isolated.
    Programs with the longevity and proven track record of the elderly 
nutrition programs need to be supported with adequate, but fiscally 
reasonable funding levels. That is what we advocate today.
    NANASP encourages you and all members of the Subcommittee to visit 
an elderly nutrition program in your state either during the upcoming 
spring recess or during May, which is Older Americans Month. NANASP is 
happy to provide you with the names and addresses of programs from your 
state. See firsthand how these programs are great value propositions. 
They provide value through their services to seniors and they provide 
value to the taxpayer dollar by delivering a core service and more in 
an efficient and localized manner in a home or community setting where 
older adults want to stay.
                                 ______
                                 

                     NATIONAL INSTITUTES OF HEALTH

      Prepared Statement of the American Institute for Stuttering
    Mr. Chairman and members of the Subcommittee, I am Catherine S. 
Montgomery, Executive Director of the American Institute for Stuttering 
(AIS). AIS was founded in 1997 in response to the need for a 
comprehensive treatment and training facility for stuttering in the 
United States. It is the only nonprofit facility in this country that 
offers both intensive and non-intensive treatment options for people of 
all ages while also providing clinical training to both new and 
established speech-language pathologists.
    Stuttering is one of the few disorders that people still laugh at. 
The disorder wreaks havoc in one's life that few understand, and much 
of it is silent suffering, below the surface. Healthy intelligent 
children who stutter are placed in ``special classes'' and labeled 
eccentric, mentally ill and emotionally disturbed. In all honesty, many 
of these children have IQs 10 to 14 points higher than the general 
population. Public education is needed to rectify a long history of 
neglect and misunderstanding.
    Developmental stuttering typically begins between the ages of 3 and 
8 years of age. Some of the most important work now being done in 
stuttering is in early intervention treatment. It is very cost 
effective, yet many do not receive treatment due to a lack of 
clinicians trained specifically in speech-language pathology. There is 
also a dire lack of public awareness about the necessity for earlier 
diagnosis and treatment possibilities.
    Despite the fact that stuttering affects approximately 3 million 
people in the United States, it remains almost imperceptible as a 
public health issue. It should be noted that suicide among teenagers 
who stutter is 3 to 4 times higher than the general population. AIS is 
launching ``Let's Talk,'' a national public education and fundraising 
campaign to create a major cultural shift in public attitudes about 
stuttering.
    ``Let's Talk'' targets six program objectives to better serve the 
stuttering community:
    1. Public Education
    2. Research
    3. Clinical Treatment
    4. Treatment Scholarships
    5. Clinical Training
    6. Advocacy
    The American Institute for Stuttering has embarked upon a new 
professional relationship with New York Medical College and Ben Watson, 
Ph.D. Dr. Watson is among the few preeminent researchers in the United 
States whose focus is on learning more about the neurological roots of 
stuttering. He is now conducting two new exciting studies that will 
help move us along in our search for the cause of stuttering.
    We know a great deal about the speech and language abilities and 
brain function of adults who stutter and we are learning a great deal 
about the speech and language abilities of young children at the onset 
of stuttering. Some people who stutter as children do not stutter as 
adults. The reason for that is not known but Dr. Watson is exploring 
this question through investigation of speech, language and brain 
function in young children who do and who do not stutter.
    Previous studies show that brain activity in some people who 
stutter differs from that seen in nonstutterers. We now need to find 
out if, and how these differences in brain activity are related to 
stuttering. To answer these questions, scientists from New York Medical 
College and the Harlem Hospital Center are studying brain activity in 
persons who stutter during the production of both stuttered and fluent 
speech. This study may clarify the relationship between changes in 
brain activity and fluency breakdown.
    The disorder of stuttering has been one of the most seriously 
misunderstood of human handicapping conditions. Approximately 1 percent 
of the population of the United States, some 3 million Americans, 
suffer this inability to speak freely and try to cope with the daily 
agonizing struggle and ridicule that accompanies it. The American 
Institute for Stuttering is dedicated to filling the serious void in 
the availability of quality treatment and training.
    The American Institute for Stuttering asks that you support a 10 
percent increase in the budget of the National Institutes of Health in 
order to maintain the momentum that has been built up over the past 
half-decade. Further, we would ask that additional funds be made 
available for the National Institute of Deafness and Other 
Communications Disorders (NIDCD) to support stuttering research. There 
is currently about $3 million of federal funding dedicated to 
stuttering research. This works out to about $1 per person afflicted 
with this disorder. Moreover, Mr. Chairman, we respectfully request 
that the committee provide NIDCD with resources to support a consensus 
conference on stuttering. Such a conference will bring together the 
leading scientists in the field to assess the current state of the 
science and will hopefully identify future research opportunities.
    Thank you for this occasion to present this testimony.
                                 ______
                                 
      Prepared Statement of the National Primate Research Centers
    The Directors of the National Primate Research Centers (NPRCs) 
respectfully submit this written testimony for the record of the U.S. 
Senate Appropriations Subcommittee on Labor, Health and Human Services, 
and Education. The NPRCs appreciate the commitment that the members of 
this Subcommittee have made to biomedical research through strong 
support for the National Institutes of Health (NIH). Given your 
leadership on this issue, the NPRCs urge Congress to direct resources 
to vital biomedical research infrastructure in order to ensure that the 
success of the federal investment in NIH will not be compromised as a 
result of deficient research resources.
    The NPRCs are a national network of eight primate research centers 
supported by the NIH National Center for Research Resources (NCRR). The 
centers comprise the National Primate Research Program (NPRP), which 
was developed in 1960 in response to recommendations provided to 
Congress by the National Heart Institute Advisory Council. This program 
seeks to address human health problems through scientific research 
using the animal models that most closely resemble humans in their 
genetics, physiology, and disease processes--primates. The NPRCs were 
developed specifically as resources to advance primate research by 
providing specialized research facilities and technologies as well as 
unique living environments for primates. NPRCs support research that is 
sponsored by nearly every institute of NIH. For example, NPRCs conduct 
research to help understand and treat diseases such as heart disease, 
cancer, diabetes, Alzheimer's, Parkinson's, and AIDS. They also conduct 
research on emerging infectious disease and on many aspects of 
biodefense. Each NPRC makes its facilities available to investigators 
from around the country. In fact, the NPRCs support more than 1,500 NIH 
funded investigators each year. This collaborative research environment 
allows scientists to combine their individual expertises beyond the 
scope of established disciplinary research projects.
    Research involving animals is a vital element in achieving this 
goal of continued medical progress for human health. The specific 
availability of information in the primate genome, which is quite 
similar to the human genome, makes primates essential in studies that 
require an integrated understanding of a whole biological system. 
Primate studies allow scientists to answer fundamental questions 
regarding both specific diseases and normal physiological processes 
that cannot be addressed directly in humans or effectively in more 
evolutionarily distant species such as rodents. Recent reports suggest 
that extensive analysis of genome structure and function in nonhuman 
primates could make immediate and significant contributions to the 
overall mission of NIH by accelerating progress in understanding many 
human diseases.
    In the 1950's, primate research produced the first vaccine for one 
of the world's worst childhood killers, the Polio virus, reducing the 
number of cases in the United States from 58,000 to one or two per 
year. Primates have also served as the best model for various types of 
HIV research, and their availability for use has resulted in at least 
14 licensed anti-viral drugs for treatment of HIV infection. Primate 
models will continue to be necessary to defend the world against future 
and assuredly occurring scourges of which we have already had hints, 
like SARS and West Nile Virus. In addition to these deadly viral 
epidemics, primate research has enabled the discovery of better 
treatments and therapies for diseases such as diabetes, heart disease, 
high blood pressure, kidney disease, depression, and other psychiatric 
illnesses. Treatments for stroke and cataracts, and the advancement of 
prenatal and postnatal care have also resulted from primate research. 
Furthermore, in addition to the potential to provide answers for long-
standing research questions, primate research provides an unparalleled 
opportunity to address more recently defined research priorities such 
as those relating to the threat of bioterrorism.
    Mr. Chairman, as you and your Subcommittee work to define your 
priorities for the year and set goals for the future, NPRCs ask that 
you continue the commitment of support for NIH and its mission by 
providing the highest funding level possible in the NIH appropriations 
bill. An increase would enable researchers to continue vital merit 
based studies on devastating diseases and disabilities, as well as 
address new and emerging national health priorities. The NPRCs believe 
this increase is justified by both the health needs and research 
capabilities of the nation. The President's budget asks for a 2.6 
percent NIH increase; however, NPRCs, the Ad Hoc Group for Medical 
Research Funding, and other leaders of the research community hope for 
more. Funding for NIH has helped to expand our nation's capabilities in 
biomedical research, and develop new treatments and cures for many 
diseases, but many unsolved human health mysteries still remain. 
Medical research is a long-term process and in order to continue to 
meet the evolving challenges of improving human health we must not let 
our commitment wane. It is therefore essential to sustain the momentum 
of NIH-funded research so that it continues to meet the goal of 
improving the health of all Americans.
    NIH relies on the NPRCs to provide centralized, professional care, 
management, and research conducted with primates. Consequently, the 
NPRCs, which are funded by annual NIH P51 base grants, have become an 
indispensable national scientific resource. Increased base grant funds 
from NIH/NCRR to meet the current and projected NPRC operational and 
modernization costs are critical to the success of NPRCs and their 
programs. NPRCs directors ask that you direct NIH to adopt and fund the 
NPRP Five Year Federal Advancement Initiative, developed by the NPRCs 
directors, for the NPRP, which addresses necessary upgrades and program 
capacity expansions. The total anticipated cost of the NPRP Federal 
Advancement Initiative would be $100 million over the current funding 
level for the NPRP P51 base grant during the 5 year period of fiscal 
years 2005-2009. Over 5 years, the NPRP Federal Advancement Initiative 
aims to increase the following by 20 percent : (1) the nationwide 
availability of primates; (2) the quality and capacity of primate 
housing and breeding facilities, as well as the availability of related 
state-of-the-art diagnostic and clinical support equipment at NPRCs; 
and (3) the number of personnel trained in primate care and management 
at the NPRCs. The NPRCs urge Congress to direct NIH to adopt and fund 
the Federal Advancement Initiative, beginning with a $36 million 
increase in funding for the P51 base grant in fiscal year 2005. The 
NPRCs also ask that Congress directs NIH to engage in a meaningful 
planning process to invest in the long-term needs of the NPRCs.
    For 2 consecutive years, language strongly in support of NPRCs has 
appeared in the report accompanying the Labor/HHS/Education 
Appropriations bills. The reports recognize the importance of the NPRCs 
as well as centers' demanding resource requirements. The fiscal year 
2004 House report directs NCRR to periodically assess NPRCs needs, and 
to increase the P51 base grant funds for the centers. The report also 
directs NCRR to submit the first of the periodic assessments along with 
the fiscal year 2005 budget request. As you know, the Senate issued 
report language stating that NCRR is expected to fully commit to the 
Five Year Federal Advancement Initiative. Thus far, while NPRCs have 
seen modest increases in base grant funds, the initiative has yet to be 
applied and funded by NCRR.
    Biomedical researchers across the nation are experiencing shortages 
in the availability of primates for essential research. NPRCs, the 
federally funded primate resource, have found it increasingly difficult 
to provide sufficient numbers of primates for ambitious and high 
priority federal research projects on cancer, AIDS, and biodefense. In 
many cases, NIH funded scientists must wait a year or more to begin 
their research due to the limited availability of primates and/or 
space. These critical shortages can only be addressed by expanding 
existing breeding colonies and developing bridging programs to 
effectively use under-utilized species of primates in research. 
Ultimately, this would reduce the wait period for the use of primates, 
expediting the start of critical research projects. Presently, the 
budget of each NPRC falls below the amount required to maintain crucial 
services at existing levels. By adopting and funding the Federal 
Advancement Initiative, not only will the centers be able to sustain 
existing programs, but they will have the ability to build much needed 
programs that will better serve the nation's federally funded primate 
researchers.
    Accommodating and properly caring for increasing numbers of 
primates also requires additional funding to modernize and expand 
primate housing and research facilities. As primate populations grow 
and primate resources increase, proper infrastructure will be necessary 
to house and care for these additional animals. Under the Federal 
Advancement Initiative, additional P51 base grant funds will also be 
invested in repairs, renovation, and construction of research 
facilities, as well as the purchase of modern laboratory equipment. 
These are essential upgrades needed to ensure that the federally funded 
research community can translate new discoveries into treatments and 
cures. Increased funding under the P51 will give the NPRCs the ability 
to develop the state-of-the-art capabilities and facilities necessary 
to keep pace with the expanded NIH research agenda.
    Since nonhuman primates represent the most sophisticated and 
relevant animal models for many areas of biomedical research, there is 
a heightened need to use primate models prior to human clinical trials, 
as well as a heightened responsibility to properly care for and manage 
these animals. Thus, the Federal Advancement Initiative proposes to use 
increased P51 base grant funding to ensure that adequate numbers of 
experts are trained in laboratory animal medicine and research. Each 
NPRC requires a highly trained and experienced primate management team 
comprised of behavioral specialists, veterinarians, and primate 
research experts. As the number of primates at the NPRCs grows, 
proportional expansion of the primate management teams is essential to 
maintain primate health and research success.
    The NPRCs provide scientists across the nation with unmatched 
access to these crucial research models in the process of making 
significant medical discoveries and translating these discoveries into 
effective therapies and treatments. This is an essential and valuable 
centralized service for researchers who cannot afford to use and 
maintain scarce and expensive primates solely for individual research 
projects. For every dollar provided to the NPRCs, more than $10 in NIH 
research is leveraged, which is equivalent to approximately $600 
million in NIH research that could not otherwise be carried out.
    With this in mind, the NPRCs express their sincere hope that the 
nation will continue to sustain the healthy development of its 
biomedical research program and that this Subcommittee will continue 
its support and leadership on behalf of NIH and its research partners 
across the nation.
    Mr. Chairman, as you and your Subcommittee work to define your 
priorities for the year and set goals for the future, the NPRCs 
directors ask that you direct NIH to adopt and fund the NPRP Five Year 
Federal Advancement Initiative. Investing in and enriching the NPRCs 
will help to expand our nation's capabilities in biomedical research, 
and enable the development of new treatments and cures for many 
diseases. NIH adoption of the NPRP Federal Advancement Initiative will 
allow NPRCs, as well as NIH, to continue to meet and advance the goal 
of improving the health of all Americans.
    Thank you for the opportunity to submit this written testimony and 
for your attention to the recommendations of the NPRCs concerning 
funding for NIH in fiscal year 2005 and implementation of the NPRCs 
Five Year Federal Advancement Initiative.
                                 ______
                                 
   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 Carol Anne Perez, of Lexington, Massachusetts, and I am 
testifying as Executive Director of the FacioScapuloHumeral Muscular 
Dystrophy Society (FSH Society, Inc.) and as an individual who has 
lived with the devastating facioscapulohumeral muscular dystrophy 
(FSHD) disorder for nearly 70 years.
    Facioscapulohumeral muscular dystrophy (FSHD) is the third most 
prevalent form of muscle disease. FSHD is a neuromuscular disorder that 
is transmitted genetically to 120,000 people. Conservatively, it 
affects 14,000 persons in the United States. For men, women, and 
children the major consequence of inheriting FSHD is progressive and 
severe loss of all skeletal muscles gradually bringing weakness and 
reduced mobility. 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, as well as mental 
retardation, can be associated with FSHD. 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. As a human services professional, wife, mother, and grandmother I 
am now in wheelchair due to the effects of FSHD.
    In accordance with its primary purpose of serving the FSHD 
community, both in the United States and abroad, the FSH Society, 
through outreach at home and international networking, has brought 
together more than 3,000 FSHD-affected families committed to working 
cooperatively. From the moment of their introduction into the FSH 
Society, these families, and, in many instances, their friends are 
bonded with their fellow members both by their common knowledge of what 
it is to live with FSHD and by the ardent desire they all feel to be 
part of a concerted effort to discover how to treat the disease and, 
ultimately, to cure it.
    People who have FSHD must cope with continuing, unrelenting, 
unpredictable 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. But 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.
    Insidiously and systematically, 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, and the way people perceive 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 5 years, the FSH Society 
has raised more than $1 million for research and has invested it in 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.
    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 5 years follows:

NATIONAL INSTITUTES OF HEALTH (NIH) APPROPRIATIONS HISTORY SOURCE: NIH/OD BUDGET OFFICE & NIH CRISP DATABASE ON-
                                                      LINE
                                              [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
----------------------------------------------------------------------------------------------------------------
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      39.1      0.144       1.5      3.83     0.0055
2004E............................................     27,887      40.2      0.144       2.7      6.71     0.0097
----------------------------------------------------------------------------------------------------------------

    Due to major initiatives from the volunteer health agencies and the 
extramural community of researchers, FSHD research at the NIH and 
funding through the NIH is moving ahead at a steady pace though 
seemingly incredibly slow for those of us suffering from FSHD. 
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.
    Funding increases for FSHD as related to the entire muscular 
dystrophy portfolio are not keeping pace with all muscular dystrophy. 
FSHD is the third most prevalent form of muscle disease and a common 
muscular dystrophy. Yet, in 2003 it received only 3.83 percent of the 
total NIH wide muscular dystrophy portfolio and that number has 
improved slightly to an estimated 6.71 percent for fiscal year 2004.
    Mr. Chairman, as you know, the National Institute of Child Health 
and Human Development (NICHD), the National Institute of Arthritis and 
Musculoskeletal Disorders (NIAMS), and, the National Institute of 
Neurological Disorders and Stroke (NINDS) are three of the National 
Institutes of Health (NIH) institutes called upon by the Muscular 
Dystrophy Community Assistance Research and Education Act of 2001 (MD 
CARE Act) to develop a research plan for muscular dystrophy (MD) 
research and education conducted through the National Institutes of 
Health. Certainly, other NIH institutes will be called into action 
where appropriate such as NHLBI, NEI, NIA, NIMH, NHGRI, NCRR, FIC, and 
OD.

  NATIONAL INSTITUTES OF HEALTH (NIH) MUSCULAR DYSTROPHY AND FSHD APPROPRIATIONS HISTORY SOURCE: NIH/OD BUDGET
                                       OFFICE & NIH CRISP DATABASE ON-LINE
                                            [In millions of dollars]
----------------------------------------------------------------------------------------------------------------
                                                           Total NIH    NIAMS      NINDS      NICHD     NIH wide
                       Fiscal year                           dollars   dollars    dollars    dollars    dollars
                                                             on MD      on MD      on MD      on MD     on FSHD
----------------------------------------------------------------------------------------------------------------
2000.....................................................       12.6        4.8        4.9        1.2        0.4
2001.....................................................       21.0        9.2        8.2        0.5        0.5
2002.....................................................       27.6       11.1        9.8        0.6        1.3
2003.....................................................       39.1       15.5       13.2        4.5        1.5
2004E....................................................       40.2       15.9       13.5        4.7        2.7
2005E....................................................       41.0       16.3       13.7        4.8        2.8
----------------------------------------------------------------------------------------------------------------

    In fiscal year 2004 year-to-date, the National Institute of Child 
Health and Human Development (NICHD) does not have a single research 
grant or project directly focused or covering FSHD. NICHD is spending 
$0 out of an estimated $4.7M on directly titled FSHD projects. NICHD is 
spending 0 percent of its muscular dystrophy budget on FSHD.
    In fiscal year 2004 year-to-date, the National Institute of 
Arthritis and Musculoskeletal Disorders (NIAMS) is funding two directly 
titled projects on FSHD and the NIH FSHD Research Patient Registry. The 
directly titled grants and contracts are 5-R21-AR-48318-03 at $198,000, 
5-R21-AR-48327-03 at $125,000, and, 3-N01-AR-02250-004 $175,754. 
Directly focused and titled research grants on FSHD actually decreased 
in fiscal year 2004 due to the expiration of a third R21 and no new 
directly titled and relevant projects being funded. No new projects 
directly titled and focused on FSHD have been initiated in the past 3 
years. Not a single one. The total direct expenditure from the lead 
institute on FSHD muscular dystrophy, the NIAMS, was $498,754. The 
NIAMS is spending 3.1 percent of its total muscular dystrophy budget on 
FSHD. Something is definitely and clearly wrong with this picture.
    In fiscal year 2004 year-to-date, the National Institute of 
Neurological Disorders and Stroke (NINDS) is funding seven directly 
titled projects on FSHD and the NIH U54 Cooperative Research Center at 
the University of Rochester. The NINDS is currently funding four R21 
style grants, two R01 style grants, the U54 MD CRC, and the NIH FSHD 
Research Patient Registry. NINDS has increased its portfolio by one R21 
grant, two R01 grants and one U54 Cooperative Research Center in the 
last year. The NINDS is spending 16.3 percent of its total muscular 
dystrophy budget on FSHD. The NINDS has shown an uncanny ability to 
move the field of FSHD research ahead with many excellent research 
projects as well as sponsoring the unprecedented NIH Cooperative 
Research Center. The second request for applications for the next round 
of Wellstone Muscular Dystrophy Centers has just been announced. The 
late Senator Wellstone would have been proud of the achievements made 
to date in the area of muscular dystrophy and it is very befitting and 
appropriate that the muscular dystrophy research centers create a 
living memory for his substantial efforts.
    While it is recognized that research grants, grant applications and 
interest of the researchers may ebb and flow, we are seriously 
concerned and perplexed with the total lack of presence by the NICHD in 
FSHD and weak showing of FSHD grants and the dip in direct FSHD support 
by the NIAMS, ostensibly the lead institute at the NIH, on muscular 
dystrophy. FSHD is the third most prevalent form of muscular dystrophy 
and the NIAMS has 3.1 percent of its dystrophy portfolio allocated to 
this disease. In the case made that the NIH is not receiving enough 
grants applications for FSHD, it can be said that the volunteer health 
agencies and extramural community of researchers have done everything 
in our power to grow the area of research and to promote new 
researchers and research projects. The NIH needs to recognize that 
there is a systemic problem as relates to FSHD and that the extramural 
research community needs to know that there are specific grant 
mechanisms and announcements with money associated.
    The NINDS, NIAMS, NICHD and relevant NIH institutes understand that 
FSHD is a unique disease and that there are exciting breakthroughs 
around understanding the molecular basis of FSHD. Elucidation of the 
molecular pathogenic pathways of the FSHD disease is instrumental to 
improved patient diagnosis, counseling, management and treatment. It is 
now generally accepted that FSHD is caused by a deletion (contraction) 
of D4Z4 repeats on the chromosome 4q. New mutations are frequently 
encountered and approximately half of cases seem to be due to somatic 
rearrangements. An interesting gender difference in disease expression 
in mosaic patients--males are more susceptible to disease--suggest a 
hormonal modulation of the phenotype. FSHD is associated with a genomic 
rearrangement and it is unlikely that the D4Z4 deletion structurally 
compromises a putative FSHD gene. Evidence strongly supports a model in 
which the D4Z4 contraction induces a change in the chromosomal 
environment, more specifically the chromatin structure, which in its 
turn modulates the gene expression of gene(s) in cis or in trans. This 
may occur by a spreading or looping mechanism, or more speculatively, 
by a mechanism similar to transvection as chromosome ends of 4q and 10q 
seem to exhibit a higher pairing frequency and other forms of cross 
talk. However, identification of the exact molecular mechanism and the 
crucial target gene(s) has still to be done. There is increasing 
evidence for FSHD-specific changes in the chromatin structure and the 
histone code. Most arguments suggest a unique (novel) pathogenic 
mechanism behind FSHD. Elucidation of this intricate molecular network 
is instrumental to the development of evidence-based treatment (and 
preventive) strategies.
    The following is a non-exhaustive list of top priority research 
targets and areas for investigation that has been given by FSHD 
research experts to the NIH for consideration as the NIH research plan 
is developed. The order is not intended to indicate priority rating. 
(1.) Detailed characterization of individual candidate genes on 
chromosome 4q; (2.) Identification of the difference between 4qA and 
4qB; only short 4qA is causing FSHD; (3.) The molecular causes and 
consequences of the exchange between 4q and 10q; (4.) Chromatin 
structure and nuclear organization--histone code; methylation, 
acetylation etc.; (5.) Establishment of the gene expression modulation 
on chromosome 4q and genome-wide; (6.) Development of functional models 
in vitro (cellular) and in vivo (transgenic); (7.) Implementation of 
systems biology (integrated -omics and bioinformatics) to reveal 
molecular and metabolic pathways involved; (8.) Harmonize and 
standardize molecular diagnostic procedures; (9.) Systematic 
ascertainment and characterization of (homogenous) patient populations 
for clinical trials; (10.) Generation of tools and reagents to monitor 
(pharmacological, training, or gene therapy) interventions; (11.) 
Identification of additional FSHD loci and genes.
    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 continue its support for the overall budget increases 
for the NIH as this will alleviate the serious budget constraints faced 
by this most remarkable federal agency. We also ask that Congress 
request an explanation from the program staff and Directors of the NIH 
NIAMS and NICHD for the inability to do better in the area of FSHD 
despite repeated Congressional requests. 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 and present 
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 feeble. Mr. Chairman thanks to your 
extraordinary efforts, consideration and work in this area I have hope 
that we will find solutions and that hope keeps me going.
    Mr. Chairman, again, thank you for providing this opportunity to 
testify before your Subcommittee.
                                 ______
                                 
        Prepared Statement of the American Psychological Society
                       summary of recommendations
  --As a member of the Ad Hoc Group for Medical Research Funding, APS 
        recommends $30.78 billion for NIH in fiscal year 2005.
  --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 
$30.78 billion for NIH in fiscal year 2005.
    While the process of doubling the budget of NIH was completed on 
schedule, by no means is our work finished. We must think of that 
process not as a culmination, but as the beginning of something 
miraculous in the world of science and discovery. Within NIH budget, my 
testimony 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 serious 
health conditions--heart disease, lung disease, diabetes, 
schizophrenia, 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. 24 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 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 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 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.
    This Committee has expressed interest in this study in the past. 
Your colleagues in the House stated in their fiscal year 2004 
appropriations report, ``The Committee recognizes the continuing need 
for young investigators and clinical scientists, and encourages NIH to 
increase its support for research training and loan repayment programs. 
The Committee is aware that the National Academy of Sciences is 
currently conducting its congressionally authorized study of research 
personnel needs with regard to the National Research Training Awards. 
This Committee has expressed interest in this study in the past, and is 
looking forward to receiving NAS's recommendations with regard to 
health research training priorities.''----(H. Rpt. 108-188 p. 97)
    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 and Evidence Based Treatment.--In 
January, the National Institute of Mental Health hosted a conference in 
cooperation with the Academy of Psychological Clinical Sciences. Its 
goal was to begin a dialogue on the growing gap between psychological 
clinical science training and clinical treatment. Building a solid 
footing for the training and development of future clinical researchers 
was the broad aim of the gathering. The meeting between the Academy and 
NIMH brought leaders of the two groups together to outline the 
challenges to clinical science training and develop a strategy for 
strengthening that training. Also discussed was the need to encourage 
more students to pursue research careers, and support the use of 
evidence-based treatments by practitioners. We believe this is the 
perfect illustration of what Congress had in mind when it chose to 
double the NIH budget; applying advances in science and research to the 
treatment of those in need, and watching the two fields progress as one 
to the benefit of all. 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.--The behavioral science research 
branch at NIMH plays a pivotal role at the institute, funding research 
in cognitive science, personality and social cognition, and 
biobehavioral regulation. Knowledge derived from the investigation of 
basic behavioral processes is critical to the specification of 
behavioral abnormalities in mental disorders, as well as to the 
identification of risk and protective factors and the development of 
effective interventions. 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. The National 
Mental Health Advisory Council has formed a task force that is 
currently examining the basic science portfolio of NIMH, including 
basic behavioral science. Their charge is to recommend the best course 
of research for the future, based on past successes and the current 
direction that research is headed in. Basic behavioral research is 
critical not only to the mission of NIMH, but also to the health of the 
nation. We ask the Committee to encourage NIMH's continued efforts to 
strengthen the ties between basic and clinical behavioral research, and 
to monitor 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.
         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. The 
research mission of NIGMS 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) 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 5 years in the reports on the fiscal year 2000, fiscal year 
2001, fiscal year 2002, fiscal year 2003, and fiscal year 2004 
appropriations for NIH. Specifically, you said: ``The Committee 
believes that NIGMS has a scientific mandate to support basic 
behavioral research because of the clear relevance of fundamental 
behavioral factors to a variety of diseases and health conditions. The 
Committee encourages the NIGMS to incorporate basic behavioral research 
as part of its portfolio, especially in the areas of cognition, 
behavioral neuroscience, behavioral genetics, psychophysiology, 
methodology and evaluation, and experimental psychology.''
    Last September, Senators Specter, Harkin, and Inouye engaged in a 
colloquy on this subject, which appeared in the Congressional Record. 
All three of these Senators agreed on the important role that basic 
behavioral science plays in our national research agenda. Pressing 
national health issues such as post-traumatic stress disorder, 
unintentional injuries, and tobacco, alcohol and drug addiction can all 
benefit from basic behavioral research. We ask the committee to please 
continue its efforts to have NIGMS include basic behavioral research 
and research training in its portfolio.
    In response to these repeated requests from Congress, a working 
group has been established with the charge of examining the basic 
behavioral science research portfolio for the whole of NIH. Consisting 
of experts in basic behavioral sciences from both inside and outside 
NIH, this group was established to offer recommendations on the future 
of this research, in terms of both what should be studied and at which 
institutes. It will report its findings to the NIH Director's Advisory 
Council. In their fiscal year 2005 Congressional Justification 
document, NIGMS cited this working group and committed to working with 
it. We ask that the committee monitor the progress of this working 
group and carefully evaluate its findings.
    Basic behavioral research in addiction (significance for NIDA, 
NIAAA, NCI and NHLBI), obesity (significance for NIDDK, NHLBI, and 
NICHD), behavioral genetics (significance for NIDA, NIAAA, NINDS, and 
NHGRI) and neuroscience (significance for NIMH, NINDS, and NHGRI) just 
to name a few, are all within the NIGMS mission. 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 is committed to bringing the Nation the best possible 
prevention and treatment interventions for drug abuse and addiction by 
harnessing the power of science. They accomplish this mission through a 
wide variety of research centers and projects, all of which are on the 
cutting edge of today's science and research methods.
    National Drug Abuse Treatment Clinical Trials Network (CTN).--
NIDA's National Drug Abuse Treatment Clinical Trials Network (CTN) is 
helping bring new medications and behavioral treatments for addiction 
to communities. Since its establishment in 1999, the CTN has expanded 
from 5 to 17 sites across the country. 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.
    Brain, Behavior, and Health: An Integrative Approach.--Scientific 
understanding has reached a stage where all the elements of the human 
brain can be mapped out. NIDA will take a leadership role in working 
with other NIH Institutes and Centers and with external groups, to 
better understand the interactions among brain, behavior, and health. 
Understanding these connections will help us NIDA in the development of 
new prevention strategies. Science will find ways to make us better 
able to modify behavior in ways that encourage people to take advantage 
of existing preventive strategies. All the research initiatives being 
put forward by NIDA for fiscal year 2005 will be undertaken within this 
integrated approach to brain, behavior, and health.
    Comorbidity.--The mentally ill are at very high risk for substance 
abuse and addiction. Comorbidity between drug abuse and mental illness 
needs to be addressed in order to provide treatments and services that 
are truly effective. NIDA would like to expand research to better 
understand the comorbid nature of these disorders and to translate this 
knowledge into improved prevention and treatment strategies. 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.
    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.
    Underage Drinking.--After the successful launch of NIAAA's 
initiative to reduce college drinking through education and 
intervention (the web site has received over 12 million hits in just 
under 2 years), the attention of the institute has gone one step 
further and is now more committed than ever to the eradication of 
underage drinking. Risk factors for alcoholism manifest largely in 
adolescence, and possibly in childhood. Underage drinking leads to 
problems for young people that will have long term effects on their 
lives. This is a public health risk that requires the best research, 
including behavioral and psychological science research that Congress 
can support. The development of better prevention strategies and 
learning more about the mind/body interaction, as well as environmental 
influences, are some of the steps that NIAAA has taken in this fight 
against a formidable and destructive opponent. 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.--Scientists estimate that as 
many as 50 percent to 75 percent of cancer deaths in the United States 
are caused by human behaviors such as smoking, physical inactivity, and 
poor dietary choices. 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.
    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.
    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 crosscutting initiatives in which 
behavioral research plays a critical role.
    NIH Roadmap.--There has been much attention paid in recent months 
to the cross NIH initiative known as the ``Roadmap.'' This project will 
take NIH into the 21st century by revolutionizing the way the 
institutes think about research and its application into and impact on 
health services. Transdisciplinary teams of researchers, including 
behavioral scientists, will conduct high risk/high reward research that 
will put us on a path towards a healthier population. An excellent 
example of this transdisciplinary research and the importance of 
behavioral science is an RFA for health research training issued under 
the Roadmap program entitled: INTERDISCIPLINARY HEALTH RESEARCH 
TRAINING: BEHAVIOR, ENVIRONMENT AND BIOLOGY. Among the goals of the RFA 
is the study of mental disorders by approaches that integrate 
neuroscience, genetics, behavioral science, computational science/
modeling, and clinical sciences, in an attempt to understand the 
confluence of genetic, biological, behavioral and environmental factors 
involved in the etiology, treatment and prevention of these disorders.
    Obesity.--Obesity is a health problem all too often overlooked; 
yet, recently it has begun to receive the attention it is warranted. It 
is no longer a condition that can be overlooked, as it is the leading 
cause of health problems in America, even more so than smoking. 
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 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 several institutes, such 
as NHLBI, NICHD, NIDDK, NIA, and NCI.
    Sexual Behavior Research and Peer Review.--Recently, much publicity 
has been given to research conducted at NIH that involves human 
sexuality and sexually transmitted disease. This research is critical 
to the health of all Americans, and must continue unimpeded. Recent 
attacks on NIH for supporting research in health and behavior are 
motivated by objections to particular behaviors or to the populations 
being studied. These attacks are intended to stop funding of research 
relating to such things as reproductive functioning, sexually 
transmitted diseases, substance abuse, and other public health 
problems. This research has enormous implications for understanding and 
preventing a range of health problems, including HIV and AIDS; problems 
of physical, mental and social development in children; violence; 
addiction; teen pregnancy; and numerous other conditions that stem from 
behavioral threats to health. These problems are not limited to 
particular segments of our society; the health and economic 
consequences of these behaviors affect individuals, families and 
communities of all ethnic backgrounds, professions, and income levels. 
Our best and only hope for combating these issues is a robust health 
research agenda based on scientific priorities and methods. The 
American Psychological Society strongly supports the scientific peer 
review system of the National Institutes of Health and we encourage 
Congress and the public to reject efforts to undermine that system by 
attacking selected grants. NIH's system for evaluating research 
proposals ensures that the best science is brought to bear on our 
nation's most pressing public health problems. On this subject, NIH 
director Zerhouni wrote to Congress: ``I fully support NIH's continued 
investment in research on human sexuality, and I believe that the peer 
review process has worked properly and provided a level of valuable and 
independent view in this important area of research.'' In the interest 
of public health, our Nation's leaders must take whatever steps are 
necessary to protect the scientific peer review system from the 
chilling effects of ideological influences.
    It is 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.
    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 American Thoracic Society

                    SUMMARY--FUNDING RECOMMENDATIONS
                        [In millions of dollars]
------------------------------------------------------------------------
                           Agency                               Amount
------------------------------------------------------------------------
National Institutes of Health..............................     30,000.0
    National Heart, Lung and Blood Institute...............      3,165.8
    National Institute of Allergy and Infectious Disease...      4,733.3
    National Institute of Environmental Health Sciences....        694.1
    Fogarty International Center...........................         71.5
    National Institute of Nursing Research.................        148.5
Centers for Disease Control and Prevention.................      7,500.0
    National Institute for Occupational Safety and Health..        306.9
    Office on Smoking and Health...........................        130.0
    Environmental Health: Asthma Activities................         70.0
    Tuberculosis Control Programs..........................        528.0
------------------------------------------------------------------------

    The American Thoracic Society (ATS) is are pleased to submit our 
recommendations for programs in the Labor Health and Human Services and 
Education Appropriations Subcommittee purview.
    The American Thoracic Society, founded in 1905, is an independently 
incorporated, international education and scientific society that 
focuses on respiratory and critical care medicine. 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
    Lung disease in America is a serious problem. Each year, an 
estimated 342,000 Americans die of lung disease. Lung disease is 
responsible for 1 in every 7 deaths, making it America's number three 
cause of death. More than 35 million Americans suffer from a chronic 
lung disease. In 2002, lung diseases cost the U.S. economy an estimated 
$141.8 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, asthma and severe acute 
respiratory syndrome (SARS).
    The ATS is pleased that the Subcommittee provided increases in the 
National Institutes of Health (NIH) and the Centers for Disease Control 
and Prevention (CDC) budget last fiscal year. The ATS is pleased that 
the Administration and Congress modestly increased the National 
Institute of Health (NIH) budget in fiscal year 2004. However, we are 
extremely concerned with the President's fiscal year 2005 budget that 
proposes a mere 2 percent increase for NIH and signficiant cuts for 
CDC. We ask that this Subcommittee recommend a 10 percent increase for 
NIH. In order to stem the devastating effects of lung disease, research 
funding must continue to grow to sustain the medical breakthroughs made 
in recent years. While our statement will focus on selected parts of 
the Public Health Service, we are firmly committed to appropriate 
funding for all sectors of our nation's public health infrastructure.
                                  copd
    Chronic Obstructive Pulmonary Disease (COPD) is the fourth leading 
cause of death in the United States and the third leading cause of 
death worldwide. Yet, COPD remains relatively unknown to most 
Americans. COPD is the term used to describe the airflow obstruction 
associated mainly with emphysema and chronic bronchitis and is a 
growing health problem.
    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 13.3 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, aged 18 and older in the United 
States were estimated to have COPD. In addition, according to the new 
government data based on a 2001 prevalence survey, 3 million Americans 
have been diagnosed with emphysema and 11.2 million are diagnosed with 
chronic bronchitis. In 2001, 118,000 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 $32.1 
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 to 
repair damage to lung tissue caused by COPD. Additional research is 
needed to pursue these leads.
    Despite these promising leads, the ATS feels that research 
resources committed to COPD are not commensurate with the impact COPD 
has on the United States and the world. Clearly more needs to be done 
to make Americans aware of COPD, its causes and symptoms. We understand 
that the National Heart Lung and Blood Institute (NHLBI) is developing 
a public education program on COPD. The ATS supports this effort and 
encourages the NHLBI to partner with the patient and physician 
community in developing the COPD public education campaign. 
Additionally, we recommend the Subcommittee encourage NHLBI to devote 
additional resources to finding improved treatments and a cure for 
COPD. It affects tens of millions of Americans and can be an extremely 
debilitating condition. It has been estimated that 13.3 million 
patients have been diagnosed with some form of COPD and as many as 24 
million more are undiagnosed.
    The ATS is pleased to announce the formation of a new congressional 
caucus that will focus on COPD. On March 30, 2004, the Congressional 
COPD Caucus officially began its work and the ATS encourages members of 
this Subcommittee to join.
                                 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.
    Last month, the CDC issued a new report indicating that asthma 
rates have risen for the past 10 years. It is estimated that close to 
20.3 million people suffer from asthma, including an estimated 6.3 
million 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. Asthma also 
represents the most common cause of school absenteeism due to chronic 
disease. In 2001, there were 2 million emergency room visits due to 
asthma.
    Asthma also kills. In 2001, 4,200 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.
    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 the National Heart, Lung and Blood 
Institute (NHLBI) has discovered genetic components as well as how 
infectious disease contributes to asthma. NHLBI researchers have also 
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.
    Progress is being made to fight the growing asthma epidemic. We are 
pleased to report that the fourth American Lung Association Asthma 
Clinical Research Centers (ACRC) Network study began in September 2003. 
That study hopes to determine if patient education and the ways of 
presenting asthma drugs can improve treatment. The first ACRC study 
concluded that a considerable reduction in the number of 
hospitalizations, resulting in lower health care costs, could be 
achieved if all people with asthma were vaccinated for influenza. The 
19 ACRC centers around the United States evaluate treatment, education 
and other intervention strategies for asthma in adults and children. 
This network is one of the largest clinical research networks in the 
United States and will continue to develop innovations that will 
directly benefit patients.
    The ATS also feels that the Centers for Disease Control and 
Prevention (CDC) must play a leadership role in the ways to assist 
those with asthma. National statistical estimates show 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 $37 million for the CDC 
to conduct asthma programs. CDC will use these funds to conduct asthma 
outreach, education and tracking activities. We recommend that CDC be 
provided $70 million in fiscal year 2005 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
    The first lung disease research began with the treatment of those 
who had tuberculosis (TB) (TB) or ``consumption'', as it was called at 
the turn of the 20th century. Tuberculosis is an airborne infection 
caused by a bacterium, Mycobacterium tuberculosis. Tuberculosis 
primarily affects the lungs but can also affect other parts of the 
body, such as the brain, kidneys or spine.
    Tuberculosis is spread through coughs, sneezes and close proximity 
to someone with active tuberculosis. People with active tuberculosis 
are most likely to spread the disease 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.
    Tuberculosis takes a toll on the U.S. economy, with total direct 
and indirect costs of $1.1 billion. There are an estimated 10 million 
to 15 million Americans who carry latent tuberculosis infection. Each 
has the potential to develop active tuberculosis in the future. About 
10 percent of these individuals will develop active disease at some 
point in their lives. In 2003, there were 14,871 cases of active 
tuberculosis reported in the United States. This is only a 1.4 percent 
decline in the number of cases reported in 2002 and is the smallest 
annual decrease reported since 1992, the year the incidence of 
tuberculosis peaked during a period of resurgence from 1985-1992.
    Upon review of this information, many have concluded that a cycle 
of neglect has begun, reminiscent of the previous resurgence. The ATS, 
in collaboration with the National Coalition for Elimination of 
Tuberculosis, recommends an increase of $105 million for TB control in 
fiscal year 2005 to allow the CDC undertake an unprecedented 
initiative, Intensified Support and Activities to Accelerate Control 
(ISAAC) to enhance, maximize and target resources to sustain the 
momentum of the past decade and accelerate the control and elimination 
of tuberculosis. ISAAC targets tuberculosis in African Americans, 
tuberculosis along the United States-Mexico border, allows for 
universal genotyping of all culture positive TB cases and expands 
clinical trials for new tools for the diagnosis and treatment of 
tuberculosis.
    In the summer of 2000, the Institutes of Medicine (IOM) 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 tuberculosis. The IOM report provides the United 
States with a road map of recommendations on how to eliminate 
tuberculosis in the United States. The IOM report identifies needed 
detection, treatment, prevention and research activities. The report 
concludes that with proper funding, organization of prevention and 
control activities and research for development of new tools, 
tuberculosis can be eliminated as a public health problem in the United 
States. We have endorsed the IOM report and its recommendations. The 
components of ISAAC begin to fully implement the recommendations of the 
IOM.
    While declining overall TBB rates is good news, the slowing of the 
decline in rates and the emergence and spread of multi-drug resistant 
TtuberculosisB poses a significant threat to the public health of our 
nation. Increased support is needed if the United States is going to 
continue progress toward the elimination of tuberculosis.
    The NIH also has a prominent role to play in the elimination of 
tuberculosis. 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 Institute of Allergy and Infectious Disease 
has developed a Blueprint for Tuberculosis Vaccine Development. We 
encourage the subcommittee to fully fund the TB vaccine blueprint.
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, the 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 2 
billion people who have tuberculosis 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 that Congress provide an 
additional $3 million for the 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. We 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. We recommend that 
the Subcommittee provide a $30 million increase for the NIOSH budget. 
The $30 million increase will be used for the NIOSH Emergency 
Preparedness agenda, including activities at the National Personal 
Protective Technology Laboratory, improve workers' safety, and invest 
in protective technology that will help our nation respond to the 
growing threat of bioterrorism. In addition, increased NIOSH funding is 
needed 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.
    Finally, the overall funding increase for NIOSH will increase 
training of occupational health professionals in the United States. 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. One such program is the Capacity Building 
for Worker safety and health that includes training opportunities for 
occupational health professionals at NIOSH--sponsored Centers of 
Excellence. We believe more funds are needed in order to track the 
incidence of serious work-related illnesses and injury.
                       physician workforce supply
    As the number of people diagnosed with lung diseases rises, we need 
to ask, who will be treating lung disease patients in the future? The 
ATS is also concerned about the supply of physicians in the United 
States. The ATS is 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 affect 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 the Health 
Resources and Services Administration (HRSA) will be conducting a study 
on physician workforce supply in the United States. We are hopeful that 
the HRSA study will confirm the looming shortage of physicians in the 
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 it will be exploring in the next year. One area of focus will be 
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. 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.
    One area of new and emerging research conducted by the NHBLI deals 
with Sleep-disordered breathing (SDB). SDB is a medical condition 
associated with upper airway obstruction and cessation of breathing 
that leads to repeated episodes of asphyxia during the night. SDB is 
very prevalent in the U.S. population with conservative estimates set 
at 2 percent to 3 percent of all children, 5 percent of middle age 
adults, and in excess of 15 percent of the aged population. The major 
health-related implications and morbid consequences of SDB include the 
neurocognitive and cardiovascular morbidities, depression, 
hypertension, increased frequency of myocardial infarction and stroke, 
and increased frequency of motor vehicle accidents due to the increased 
sleepiness induced by the disruption of sleep in SDB patients. Both the 
frequency of SDB and its consequences are anticipated to increase in 
the next decades due to the aging of the overall U.S. population and 
the ongoing epidemic of obesity that afflicts our country. The ATS 
supports the need for more research into the causes, diagnosis and 
treatment of SDB.
    In conclusion, lung disease is a growing problem in the United 
States. It is this country's third leading cause of death, responsible 
for 1 in 7 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 1 year. Worldwide, tuberculosis kills 
3 million people each year, more people than any other single 
infectious agent. The level of support this Subcommittee approves for 
lung disease programs should reflect the urgency illustrated by these 
numbers.
                                 ______
                                 
    Prepared Statement of the American Society of Clinical Oncology
    The American Society of Clinical Oncology (ASCO) is the world's 
leading professional society representing more than 20,000 physicians 
and health care providers engaged in cancer treatment and research. 
ASCO appreciates the opportunity to submit a statement for the 
Subcommittee record. This is a time when cancer clinical researchers 
faces tremendous challenges and also significant opportunities, and we 
recommend several actions that will ensure the efficient translation of 
basic research findings into new treatments.
    ASCO members owe a tremendous debt to this Subcommittee and the 
Congress for your leadership over the past decade in boosting the 
funding for the National Institutes of Health (NIH). The doubling of 
the NIH budget between fiscal year 1999 and fiscal year 2003 is a 
particularly impressive accomplishment, but Congress acted as a 
steadfast friend to research for many years before the period by 
guaranteeing that NIH had the resources it needed to support basic, 
translational, and clinical research.
    With the resources that have been provided to NIH and to biomedical 
researchers across the country, our knowledge of the genetic, 
molecular, and cellular basis of many diseases has increased 
dramatically. There has been a revolution in our understanding of 
cancer, and the traditional approach to cancer, which was based on the 
site of the cancer, is changing. Instead of seeking to develop 
treatments based on the location of the cancer, we are instead looking 
for treatments that correct the underlying genetic or molecular defect 
that causes the disease. The promise of cancer research has never been 
greater, although realizing that promise will be difficult and will 
require significant resources.
    ASCO and others in the research community are aware of the current 
budget situation and the effect it will likely have on NIH 
appropriations. Nevertheless, we strongly urge that Congress make every 
effort to boost NIH funding, as continued funding increases will ensure 
that the basic research progress made in recent years will continue and 
that those basic research findings will be translated to new 
treatments. We endorse the recommendation of the Federation of American 
Societies for Experimental Biology and others in the research community 
that NIH funding be increased by 10 percent in fiscal year 2005, to a 
total of $30.6 billion.
                            the nih roadmap
    The leaders of NIH have given serious consideration to reforms that 
will equip NIH to remain the world's leading biomedical research 
institute in the 21st century. ASCO believes that the three main areas 
of focus of the Roadmap--establishing new pathways to discovery, 
developing research teams of the future, and re-engineering the 
clinical research enterprise--are appropriate, and achieving these 
goals of the Roadmap would equip researchers for developing new 
treatments.
    We are gratified that the NIH Roadmap emphasizes the need to re-
engineer the clinical research enterprise. Although the cancer clinical 
trials system at the National Cancer Institute (NCI) is strong and has 
been a major factor in advances in cancer care, we welcome the NIH 
Roadmap's critical look at clinical trials systems as a means of 
improving those systems. Clinical researchers must be provided the 
tools, including informatics and tissue or specimen repositories, to 
conduct their work efficiently, and the Roadmap acknowledges the need 
for those investments.
    In addition, the drafters of the NIH Roadmap properly identify a 
crisis in clinical research training and suggest steps to enhance 
training. ASCO has initiated programs to improve the training of cancer 
clinical researchers, and we welcome the special attention that NIH is 
directing to this issue.
    Implementation of the NIH Roadmap initiatives cannot be 
accomplished at the expense of successful core programs at NCI and 
other institutes, but Congress should foster the important reforms 
outlined in the Roadmap.
                   the cancer clinical trials system
    NCI has supported the development of a sophisticated system for 
conducting clinical trials that depends heavily on the participation of 
community oncologists, along with oncologists at cancer centers around 
the nation. Patients who are treated in the community have the option 
of enrolling in clinical trials, as their oncologists are almost 
certainly part of the nation's clinical trials system. This system of 
treatment, where the majority of cancer patients receive their care in 
the community and have access to the full range of treatment options, 
including clinical trial enrollment, has evolved over the last 30 
years.
    The Medicare Modernization Act of 2003 (MMA) changes dramatically 
the method by which cancer chemotherapy services provided by 
oncologists in their offices are reimbursed by Medicare. The current 
system of payment for cancer chemotherapy drugs will be shifted from an 
average wholesale price methodology to an average sales price 
methodology, and accompanying reductions will be made in reimbursement 
for the services required to administer chemotherapy in the physician's 
office. The estimates are that, in the aggregate, reimbursement for 
cancer chemotherapy services will not decline from 2003 to 2004. 
However, ASCO's preliminary predictions suggest a dramatic reduction in 
payment for cancer care beginning in January 2005. One of the tasks 
facing ASCO is to monitor this situation carefully and report to 
Congress the effects of reimbursement changes.
    We realize that this Subcommittee does not have jurisdiction over 
Medicare. We are raising this issue with the Subcommittee, however, 
because the potential effects of Medicare reimbursement changes include 
a serious threat to the clinical research enterprise. In surveys that 
ASCO has conducted among its members who are engaged in office-based 
practice, a significant number of those surveyed indicate that, in 
light of the potential Medicare reimbursement changes in 2005, they 
will be less inclined to participate in clinical research. Some members 
have already reported that they have stopped participating in clinical 
trials. ASCO members have for years reported that the per person 
payment they receive for NCI-funded clinical trials is inadequate to 
pay the costs associated with enrolling a patient on trial and 
collecting and reporting data from the trial. These physicians have 
subsidized NIH-funded trials with payments from industry-sponsored 
trials and from clinical income. According to reports from the field, 
oncologists will not be able to continue this cross-subsidization, 
because the funds simply will not be available to support this 
longstanding ad hoc practice.
    The task ahead of us now is translating the significant advances in 
our fundamental knowledge of cancer into new treatments. In no area of 
research are the opportunities greater than in cancer, and those 
opportunities will be realized by the rapid completion of clinical 
trials testing new therapies. If the community physicians who enroll 
the majority of patients in clinical trials are no longer actively 
participating in clinical research, the clinical research enterprise 
will be slowed.
    At the same time that ASCO monitors the effects of MMA cancer 
reimbursement changes and develops appropriate reform proposals, 
Congress should encourage NCI to undertake a review of the current 
system of paying for clinical trials. An immediate action that NCI can 
take is improving the payments to physicians for enrolling cancer 
patients in trials. Modest increases in payments have been approved by 
NCI in recent years, but they are inadequate. In addition, ASCO 
believes that more substantial changes--beyond a boost in the per-
patient rate of payment--may be necessary to ensure that oncologists at 
cancer centers and in the community continue to participate in clinical 
research and that all other players in clinical research, including NCI 
and industry, remain committed to participation in cancer clinical 
research. This is an urgent matter, and we recommend action by NCI to 
address it.
                 minority enrollment in clinical trials
    It is estimated that fewer than 5 percent of adults with cancer 
enroll in clinical trials. The rate of participation is even lower 
among minorities. ASCO commends NCI for its efforts to boost 
involvement of African American, Hispanic, Asian American, and American 
Indian patients in clinical trials, in part through the Minority-Based 
Community Clinical Oncology Program. This program includes 11 minority-
based CCOPs and involves more than 40 hospitals and 100 minority 
investigators. We also support the Special Population Networks, which 
involve research institutions and community providers in investigations 
of the causes of cancer disparities. This knowledge is vital to our 
efforts to erase cancer disparities, and NCI is properly investing 
resources in this research initiative.
      research to combat bioterrorism and ensure homeland security
    ASCO is pleased that the biodefense request for fiscal year 2005 
includes $47 million for the Public Health and Social Services 
Emergency Fund, which will support targeted research to develop medical 
countermeasures to treat nuclear or radiological injuries. Cancer 
researchers have expertise that will be critical to this effort, which 
includes: (1) developing drugs to prevent injury from radiological 
exposure; (2) improving methods for measuring radiological exposure, 
and (3) developing methods or drugs to restore injured tissues and 
eliminate materials from contaminated tissue. Cancer researchers are 
actively engaged in research to understand the late and long-term 
effects of cancer treatment, including chemotherapy and radiation 
therapy, and their expertise in these research areas equips them to be 
engaged in the targeted research that will likely be funded by the 
Public Health and Social Services Emergency Fund.
    ASCO appreciates the opportunity to submit this statement. 
Congress, through its strong support of NIH, has facilitated an 
explosion of knowledge about cancer and other serious and life-
threatening illnesses. Although we are poised to translate those basic 
research findings into new treatments, the clinical trials system for 
testing treatments is fragile. ASCO urges Congress to protect the 
clinical trials system, so that we can capitalize on the tremendous 
investment in basic research during the past decade.
                                 ______
                                 
     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 was founded in 1946. 
Since its inception, the Society's highest priority has been to support 
research aimed at finding the cause of MS, better treatments, and a 
cure. In 2004, the National MS Society will spend over $31 million on 
MS research supporting over 300 MS investigations. By the end of 2004, 
the Society cumulatively will have expended some $420 million since 
awarding its first three grants in 1947. This represents the largest 
privately funded program of basic, clinical, and applied research and 
training related to MS in the world.
    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.
    The federal investment in the National Institutes of Health (NIH) 
plays a major role in MS research. There are two institutes that 
conduct or fund the majority of MS research: the National Institute of 
Neurological Disorders and Stroke (NINDS) which funds 75 percent, and 
the National Institute of Allergy and Infectious Diseases (NIAID) which 
funds about 20 percent.
    For fiscal year 2004 and fiscal year 2005, it is estimated that NIH 
expenditures on MS research will be $101.3 million and $102.8 million, 
respectively. While this demonstrates a good NIH investment in MS, the 
amount seems low considering that the annual direct and indirect 
disease cost is approximately $20 billion for all people with MS in the 
United States.\1\
---------------------------------------------------------------------------
    \1\ Based on a 1994 Duke University study, indexed for 2002 by the 
National MS Society, the average annual cost of MS is estimated at 
$50,000 per person due to lost wages, increased medical care and other 
expenses. Nationwide, there are an estimated 400,000 people with MS.
---------------------------------------------------------------------------
    To ensure an adequate federal investment in MS research, the 
Society has a three-pronged strategy: (1) request funding for specific 
research priorities relevant to MS; (2) encourage collaboration across 
NIH institutes and between NIH and outside organizations; and (3) 
advocate for a 10 percent funding increase for NIH overall in fiscal 
year 2005. The National MS Society has had a long and productive 
relationship with NIH, particularly with NINDS. Our founder Sylvia 
Lawry helped spearhead the legislation that established NINDS in 1950. 
Intramural scientists from NINDS serve on our scientific advisory 
committees and help the Society make research project decisions. These 
outstanding scientists/physicians volunteer their time to ensure that 
the research supported by the Society and NIH are in concert, and not 
in opposition.
               funding research priorities relevant to ms
    The National MS Society will continue to pursue research 
opportunities with NIH in priority areas that are key to furthering the 
understanding of MS. We also will closely monitor NIH's progress in 
expanding its commitment to MS research as suggested by Congress.
    Last year, as part of our NIH advocacy efforts, the Society had the 
following congressional ``report language'' added by the House and 
Senate Appropriations Conference Committee as an instruction to NIH in 
the fiscal year 2004 omnibus appropriations package:

    ``The conferees urge NINDS to increase its overall investment in 
multiple sclerosis (MS) research. Special emphasis on imaging, 
biological markers and clinical trials for new therapeutics should be 
areas of high priority. The conferees are pleased to note the 
development of a joint symposium on MS genetics sponsored by NINDS and 
the National MS Society, and encourage the Institute to take a more 
active role at the NIH in furthering MS genetics research by developing 
collaborative strategies with the National Human Genome Research 
Institute and other relevant NIH institutes. The conferees request that 
NIH report back to Congress no later than September 30, 2004 with 
progress in its efforts to expand its commitment to multiple sclerosis. 
The conferees also are pleased to note a major success in past years in 
the creation of a joint collaborative research program in `gender and 
immunity' between the National Institute on Allergy and Infectious 
Diseases (NIAID) and a major voluntary association for the disease, in 
which NINDS participates. The conferees encourage NINDS to seek similar 
collaborative activities related to MS.''

    The Society was pleased that late in 2003 NINDS funded a 5-year $30 
million clinical trial that will test the effects of combining two of 
the MS injected therapies against the use of a single therapy. As part 
of this clinical trial, NINDS is including an additional $3-4 million 
to study the correlation between the clinical course of MS and data 
from biological markers (magnetic resonance imaging). The Society also 
was pleased that in 2003 NINDS and NMSS co-sponsored a scientific 
workshop on the role of genetics in MS. As an outcome of this workshop, 
the Society is looking to work closely with NINDS on genetics projects, 
such as the development of a collaborative and international MS 
genetics network. Such a network would facilitate the execution of 
small and large-scale studies utilizing both the latest technology to 
find genes that may confer susceptibility to MS.
    We look forward to the year-end report from NINDS on its commitment 
to MS research.
    In 2004, we will look to NINDS to establish a Working Group on MS 
(as has been done for Parkinson's Disease) to initiate planning to 
ensure that MS research is adequately supported throughout NIH and to 
collect information on research obstacles.
                    the importance of collaboration
    We cannot overemphasize the importance of collaboration. The 
National MS Society encourages NIH to increase collaboration across 
institutes and to pursue collaborative opportunities with other 
organizations.
  --Collaboration fosters an interdisciplinary approach to the 
        investigation of complex biomedical problems.
  --Jointly funded research projects significantly leverage limited 
        resources and advance the research agendas of all involved 
        parties.
    We are pleased to see that NIH Director Zerhouni made collaboration 
(both intramural and extramural) one of the pillars of his Roadmap 
Initiative--a 3-year plan addressing key research issues throughout 
NIH. As we see it, there is no other choice.
    To date, the Society has been successful with NIH on jointly 
funding a major initiative on gender and immune function. In 2001, the 
Society entered into a $20 million collaborative project with NIAID and 
other NIH institutes to investigate gender effects on the immune 
function, including autoimmunity. This is important because most 
autoimmune diseases (including MS) are far more prevalent in women than 
men. The Society is co-funding six projects and will contribute up to 
$4 million to this project. We would like to engage in other 
collaborative projects, especially with NINDS.
    The Society asks Congress to urge NIH to increase inter-institute 
collaboration as well as collaboration with external public, non-
profit, educational and private sector organizations. Possible areas 
for collaborative research could include:
  --Neurological repair.--How to effect recovery of tissue (and 
        function) lost due to neurodegenerative diseases, including MS.
  --Neurological degeneration.--Using MS as a model to study 
        neurological degeneration in diseases such as Alzheimer's 
        Disease, Parkinson's Disease and MS.
  --Genetics.--The role of genetics in susceptibility to, and disease 
        course of neurological and immunological disorders, including 
        MS.
  --Imaging.--Creation of Magnetic Resonance Imaging (MRI) centers to 
        study repair, neuroprotection and other clinical issues that 
        cut across a number of neurological disorders such as stroke, 
        Alzheimer's Disease, Parkinson's Disease and MS. One possible 
        eligibility requirement for these centers could be that a 
        facility have expertise in at least two diseases.
  --Pediatric research into diseases that rarely, but sometimes affect 
        children.
    We believe the NIH Director should establish inter-institute, 
cross-disease working groups in the above areas to examine and 
recommend worthy research topics that will set the stage for future 
collaborative projects.
    Increased internal and external collaboration, which we hope will 
occur at NIH, points to the need for improved research tracking. The 
Society also asks that Congress recommend a standard project coding 
mechanism across all NIH institutes, so that the true research 
investment in various diseases is accurately represented to the public.
           overall nih funding increase for fiscal year 2005
    The Society is concerned that NIH may face a second year of overall 
low funding increases. Furthermore, in fiscal year 2003 and fiscal year 
2004, only bioterrorism research received a healthy increase, with much 
smaller increases allocated for disease research. We fear the same may 
occur in fiscal year 2005. This is particularly disappointing after the 
fiscal years 1999-2003 funding campaign that doubled the NIH budget in 
the 5 year period.
  --We urge Congress to appropriate a 10 percent fiscal year 2005 
        funding increase for NIH.
  --While there is a need to increase our country's investment in 
        bioterrorism research, we ask Congress to balance the fiscal 
        year 2005 NIH appropriation to allow growth across all NIH 
        institutes and all areas of disease research.
    We thank the Subcommittee for this opportunity to comment and 
applaud your commitment to advancing the health and well-being of all 
Americans through investment in biomedical research.
                                 ______
                                 
     Prepared Statement of the Association of American Universities
    Mr. Chairman and members of the subcommittee: The Association of 
American Universities, representing 60 prominent research universities 
in the United States, appreciates this opportunity to submit testimony 
in support of the National Institutes of Health (NIH). Some 85 percent 
of the NIH budget is spent on research grants and contracts at higher 
education institutions across the United States. NIH research grants 
support nearly 40,000 graduate students and post-docs in universities 
and help develop a robust and diverse base of scientific talent 
critical to the future success of the nation's medical research 
efforts. AAU and its member research universities are very aware of the 
current restraints on domestic discretionary spending due to proposed 
funding increases for defense and homeland security programs, but have 
concerns about the long-term vitality of the biomedical research 
enterprise if the committee does not recognize that our nation's 
investment in NIH is also a top priority. AAU strongly urges the 
committee to provide a 10 percent increase in the fiscal year 2005 NIH 
budget because today's medical science translates into accelerated 
cures for tomorrow.
    Past investment in NIH and our national biomedical research 
enterprise--the medical science performed by more than 217,000 
scientists at more than 2,800 institutions around the country--has led 
to an exponential increase in the complexity of medical questions that 
can be asked and answered. NIH Director Elias Zerhouni has testified 
eloquently before your subcommittee about the health care revolution of 
a generation ago: medical research has transformed formerly lethal 
diseases into manageable afflictions and has given patients and their 
families more years of life. In the past 20 years, some of mankind's 
gravest scourges, such as childhood cancers, have been tamed. Deaths 
from heart attack and stroke have been cut by hundreds of thousands per 
year. HIV/AIDS, which was a death sentence 10 years ago, has become an 
onerous but survivable burden for those fortunate enough to live in the 
United States and receive triple-drug therapies. Today's biomedical 
research enterprise offers the hope of cures that add not just years to 
life, but quality of life to those years. AAU endorses the NIH 
``Roadmap for Research'' developed by Dr. Zerhouni and his colleagues 
as an important framework for making the strategic investments that 
will fully capitalize on recent breakthroughs in genomics, 
bioinformatics, and molecular medicine. Cures--not just therapies--for 
juvenile diabetes, heart disease, osteoporosis, stroke and multiple 
cancers are within our grasp, if we can accelerate promising new 
research.
    NIH-supported scientists have transformed the health and quality of 
life of all Americans. To take just one example, more than half of all 
cancers treated today will be cured. U.S. medical science is the envy 
of the world and the hope of mankind because science--not politics or 
ideology--has determined what research is supported. Recent investments 
in NIH funded research have:
  --Yielded 100 new cancer drugs that are now in clinical trials. NIH-
        supported university research, for example, has produced 
        therapies that target prostate cancer cells and the blood 
        supply of other solid tumors, leaving healthy tissues 
        untouched.
  --Facilitated clinical trials to further develop at least 11 vaccines 
        to address the HIV subtypes that together cause most of the HIV 
        infections around the world. Since 1987, NIH's National 
        Institute for Allergy and Infectious Diseases (NIAID) has 
        enrolled more than 3,357 volunteers in 53 Phase I & Phase II 
        preventive HIV vaccine trials of 28 candidate vaccines.
  --Enabled scientists to identify the first drug to have an effect on 
        both insulin production and insulin action as a potential 
        therapeutic agent for type 2 diabetes. This example of an NIH 
        investment in basic research could help the 17 million 
        Americans who suffer from this disease.
  --Revolutionized biomedical science through the sequencing of the 
        human genome. Researchers now are able to locate, identify, and 
        describe the function of many human genes. This new knowledge 
        will lead to genetic tests to diagnose diseases and the 
        development of drug therapies that are tailored to individual 
        patients.
    AAU urges the committee to provide appropriate funding for NIH or 
many promising opportunities will not be funded. If NIH receives 
inadequate funding in fiscal year 2005, we will lose significant 
opportunities to cure disease and comfort the afflicted. A 10 percent 
increase for NIH will:
  --Enable faster and cheaper genomic sequencing. Currently it costs 
        $2-3 billion to sequence an entire genome. An investment of $50 
        million today will enable the development of new technologies 
        that will cut the cost of sequencing to $100,000 for a complex 
        mammal within 5 years and drive the cost of an entire genome to 
        $1,000 within 10 years.
  --Support the new science of proteomics that has enabled physicians 
        to distinguish among different types of ovarian or breast 
        cancer tumors and reveal patterns that may have important 
        clinical implications. Because of previous investments, doctors 
        can now tailor therapies such as chemotherapy and radiation to 
        patients based upon their tumor types, dramatically increasing 
        cure rates and reducing the suffering of women who don't have 
        to undergo painful therapies needlessly. Today's investment 
        will drive the cost of diagnosis down to pennies per patient 
        and further individualize cancer therapies.
  --Fund the National Cancer Clinical Trial Database that allows 
        patients to access information about NCI funded research by 
        disease type; enables scientists to use recent technological 
        innovations to produce vast amounts of information about the 
        genes and proteins active within cancer cells; and allows 
        cancer funding agencies to coordinate research efforts across 
        agencies.
  --Further reduce the time it takes to develop a vaccine, which has 
        plummeted from 15 years to fewer than four. For example, two 
        vaccine candidates for West Nile virus were in clinical trials 
        within 3 years of West Nile's arrival in the continental United 
        States. And biomedical researchers were able to take the 
        knowledge and tools made possible by the NIH doubling to 
        identify and sequence the SARS virus in a matter of weeks. As 
        the nation braces for newly emerging infectious diseases such 
        as bird flu or a bioterror attack, we must continue to develop 
        new or improved vaccines.
                               conclusion
    As a nation, we enjoy the benefits of a system that recruits 
talented individuals and encourages them to compete for research 
funding. These individuals undergo a lengthy, rigorous and highly 
selective apprenticeship before they apply for their own research 
funds. The competition for research support is fierce, and at best only 
about 30 percent of the applicants for NIH funds are successful. When 
the success rate falls substantially below this level, important 
projects are disrupted and promising young people are dissuaded from 
research careers. Thus, in order to sustain the high quality of the 
biomedical research system, we must continue to provide resources to 
encourage the research of our nation's best scientists.
    It is imperative that this committee continue its legacy of bi-
partisan support for NIH--the future health of the nation depends of 
it. In a year when defense and homeland security are top priorities, 
the committee must not allow investments for NIH to erode. The 
scientific community is tirelessly working to translate research into 
tangible benefits for all Americans. The health and quality of millions 
of lives depends on strong support from this committee for the fiscal 
year 2005 NIH budget.
    Thank you for this opportunity to submit testimony and please let 
me know if you have questions.
                                 ______
                                 
   Prepared Statement of the March of Dimes Birth Defects Foundation
    The 3 million volunteers and 1,400 staff members of the March of 
Dimes appreciate the opportunity to submit the Foundation's federal 
funding recommendations for fiscal year 2005. 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.
    The volunteers and staff of the March of Dimes are deeply concerned 
that for the first time since 1958, the infant mortality rate increased 
in 2002. Increases in deaths due to premature birth, birth defects, and 
maternal complications during pregnancy are the top reasons for this 
increase. In our judgment, the modest funding increases recommended 
below would have an immediate and positive impact on this disturbing 
trend.
                     national institutes of health
    The March of Dimes joins the larger research community in 
recommending a 10 percent increase in funding for the National 
Institutes of Health (NIH), bringing total federal support to just over 
$30 billion. A sustained investment in medical research is vital to 
discovering the interventions needed to prevent and treat diseases and 
conditions. Because of the profound impact on women and children of the 
work supported by the National Institute of Child Health and Human 
Development, funding for this Institute is of particular interest to 
the March of Dimes.
National Institute for Child Health and Human Development
    The mission of the 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 in funding of 10 percent 
for NICHD. With this increase in resources, NICHD could expand research 
in several areas that are crucial to improving the health of women and 
children. Additional funds would permit expansion of research into 
preterm labor and delivery and into the causes of birth defects, and 
would enable NICHD to begin implementing the National Children's Study 
of environmental and genetic influences on child health and 
development.
    According to the National Center for Health Statistics, in 2002, 
more than 480,000 babies were born prematurely in the United States--1 
in 8 births. Since 1981, the preterm birth rate has increased nearly 29 
percent. Premature birth accounts for 23 percent of deaths in the first 
month of life. Those babies that survive are more likely than full-term 
infants to face serious multiple health problems including cerebral 
palsy, mental retardation, chronic lung disease, and vision and hearing 
loss. Preterm labor can happen to any pregnant woman and the causes of 
nearly half of all preterm births are unknown. An analysis of Agency 
for Healthcare Research and Quality data conducted by the March of 
Dimes Perinatal Data Center estimated that the total national hospital 
bill for premature babies was $13.6 billion in 2001. With overall 
hospital charges increasing rapidly--13 percent in 2001--the financial 
burden of prematurity is expected to worsen until we know how to 
prevent preterm births.
    The March of Dimes recommends a 10 percent increase for NICHD in 
fiscal year 2005 and an increase of at least $50 million over the next 
5 years to boost prematurity-related research. This increase should be 
devoted to a comprehensive biomedical research program to study preterm 
delivery etiology, prevention and treatment regimens.
            centers for disease control and prevention (cdc)
Division of Reproductive Health
    The National Center for Chronic Disease Prevention and Health 
Promotion, Division of Reproductive Health works to promote optimal 
reproductive and infant health, but does not have the resources it 
requires to study the growing problem of preterm birth. Therefore, the 
March of Dimes recommends a $20 million increase in fiscal year 2005 to 
expand research related to preterm birth. The growing problem of 
preterm birth requires an expanded, comprehensive prevention research 
agenda to identify the causes, risk factors and ways to prevent preterm 
birth. In particular, two specific programs should receive additional 
funding: (1) the Pregnancy Risk Assessment Monitoring System and (2) 
epidemiological research.
    The Pregnancy Risk Assessment Monitoring System (PRAMS) is a state-
specific, population based surveillance system designed to identify and 
monitor maternal behaviors and experiences before, during, and after 
pregnancy. Currently, CDC supports cooperative agreements with 31 
states that allow PRAMS to cover about 60 percent of all U.S. births. 
Data collected through PRAMS is used by researchers and policy makers 
to increase understanding of adverse pregnancy outcomes, to develop and 
modify maternal and child health programs, and to incorporate the most 
up to date research findings into standards of practice. The March of 
Dimes recommends an increase of $5 million to expand PRAMS so that CDC 
can develop national estimates on behavioral as well as demographic 
risk factors for preterm birth.
    Epidemiological research conducted at CDC is vital to reducing the 
incidence of preterm labor and delivery. The March of Dimes recommends 
an increase of $15 million to expand research on the prevention of 
preterm delivery for women at risk, focusing especially on factors 
contributing to higher rates of preterm delivery in African-American 
women. Increasing CDC's activities related to preterm birth will 
improve early detection of women at risk for preterm labor and lead to 
new interventions for those at greatest risk.
National Center on Birth Defects and Developmental Disabilities
    According to CDC, 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. Of the 4 million babies born each year in the United 
States, approximately 150,000 are born with one or more serious birth 
defects. 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. The causes of about 70 percent of 
all birth defects are still unknown.
    The National Center on Birth Defects and Developmental Disabilities 
(NCBDDD) works to prevent birth defects for which causes have already 
been identified and conducts research on those defects for which causes 
have not yet been found. The March of Dimes urges members of the 
Subcommittee to increase funding for the Center to $160 million in 
fiscal year 2005 (includes the transfer of Hereditary Blood Disorders 
Division). This modest increase will provide the resources necessary to 
expand prevention activities where causes are known, and to accelerate 
the pace of research where causes have not as yet been identified. An 
increase of $15.9 million in funding for prevention, surveillance, and 
research activities is vital to making progress in the fight against 
birth defects.
            Prevention: Folic Acid Education Campaign
    The NCBDDD is conducting a national public and health professions 
education campaign designed to increase the number of women taking 
folic acid daily. According to CDC, 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. Fortification of the grain supply together 
with health provider and consumer education has resulted in a 32 
percent decline in the rates of spina bifida. However, the growing 
popularity of low-carbohydrate diets has caused an increasing number of 
women to reduce or eliminate their daily intake of bread and other 
grains. A 2003 Gallup Organization survey conducted for the March of 
Dimes found that only 32 percent of women in the United States between 
the ages of 18 and 45 take a multivitamin containing folic acid on a 
daily basis, up only 4 percent since 1995. When asked what would make 
them more likely to take a multivitamin containing folic acid on a 
daily basis, 33 percent of women said they would be more likely to do 
so on the advice of their doctor or health care provider. Therefore, it 
is critical that CDC step up its campaign to educate every woman of 
childbearing age about the importance of taking a daily multivitamin 
containing folic acid.
    To enable CDC to educate more women of child bearing age and their 
health providers about the importance of folic acid, the March of Dimes 
recommends an appropriation of at least $5 million in fiscal year 2005 
for the Folic Acid Education Campaign.
            Surveillance: State Cooperative Agreements to Improve Birth 
                    Defects Tracking
    NCBDDD funds state initiatives 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 
infants and children with birth defects. Surveillance forms the 
backbone of a vital public health network. CDC is currently supporting 
cooperative agreements with 28 states, each funded at an annual level 
of between $100,000 and $200,000 for each of 3 years. The March of 
Dimes encourages Subcommittee Members to add $3.4 million (a total of 
$7.5 million) to state-based birth defects surveillance activities. As 
you may know, resources have not been adequate to fund all states 
seeking assistance. Additional funding is needed to support creation of 
programs where none exist and improvement of programs already receiving 
support.
            Research: Regional Centers for Birth Defects Research and 
                    Prevention
    NCBDDD currently funds 10 regional Centers for Birth Defects 
Research and Prevention (each Center receives 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 obtain data and identify cases for inclusion in the 
National Birth Defects Prevention Study, the largest case-control study 
of birth defects ever conducted. The centers study the effectiveness of 
primary prevention of birth defects, the teratogenicity of various 
drugs, the environmental causes of birth defects and the genetic 
factors pertaining to susceptibility to environmental causes of birth 
defects. For example in response to a scientific study showing a 
possible association between the drug loratadine, also sold under the 
brand name Claritin, and the occurrence of the birth defect 
hypospadias the National Birth Defects Prevention Study conducted a 
study that showed no association. This information will be useful to 
any woman who takes loratadine and becomes pregnant. The March of Dimes 
encourages the Subcommittee to add $10 million (for a total of $17.3 
million in funding) to support the important and promising work of the 
regional centers.
                        additional cdc programs
National Immunization Program
    Immunizations are critical to the health and well-being of 
children. CDC's National Immunization Program provides grants to 64 
state, local, and territorial public health agencies to reduce the 
incidence of disability and death resulting from vaccine preventable 
diseases. The March of Dimes urges the Subcommitttee to continue its 
longstanding policy of ensuring that federal vaccine programs are 
adequately funded to move the nation closer to the goal of vaccinating 
at least 90 percent of children and adults. To account for vaccine 
price increases, introduction of new vaccines, and to facilitate 
implementation of recent Institute of Medicine recommendations, the 
March of Dimes recommends an overall increase of $180 million in fiscal 
year 2005 for the National Immunization Program.
Polio Eradication
    The March of Dimes was founded to find ways of preventing 
poliomyelitis. Although success in developing the Salk and Sabin 
vaccines enabled the Foundation to shift its focus to a new set of 
challenges, we continue to support completing the task of polio 
eradication worldwide. Global polio eradication will save lives and 
reduce unnecessary health-related costs. The March of Dimes supports a 
funding level of $106.4 million for CDC's fiscal year 2005 global polio 
eradication activities. With polio epidemics now confined to only 6 
countries (Nigeria, India, Pakistan, Niger, Egypt and Afghanistan), it 
is important that the U.S. government maintain its commitment to 
completion of the worldwide eradication initiative.
National Center for Health Statistics
    The Foundation also supports the vital work of the National Center 
for Health Statistics (NCHS) which provides information essential for 
research and programmatic initiatives. NCHS' surveys to assess the 
health status of American's care are critical to many programs and 
initiatives. For example, the National Vital Statistics System is a 
major source of information on utilization of health services, preterm 
births, low birthweight as well as outcomes including birth defects and 
infant mortality. Increased funding would allow CDC to modernize this 
system using web-based technology that would facilitate rapid 
compilation of data and improvement in the accuracy and completeness of 
information obtained from health professionals and facilities. This 
information is needed to track trends in birth outcomes and to support 
birth defects registries. Additional resources would also enable CDC to 
continue the National Survey of Family Growth which provides essential 
information on factors affecting birth outcomes.
          health resources and services administration (hrsa)
Newborn Screening
    Newborn screening is a public health activity used to identify 
genetic, metabolic, hormonal and/or functional conditions in newborns. 
Many such disorders, if left untreated, can cause disability, mental 
retardation, and even death. Although nearly all babies born in the 
United States undergo newborn screening tests for some genetic birth 
defects, the number and quality of these tests varies from state to 
state. The March of Dimes recommends that every baby born in the United 
States receive, at a minimum, screening for a core set of nine 
metabolic disorders as well as hearing deficiencies.
    In fiscal year 2004, the Congress provided first-time funding for 
implementation of Title XXVI of the Children's Health Act of 2000. This 
program is designed to strengthen state 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. The March of Dimes proposes 
an appropriation of $25 million to support HRSA's work with states to 
expand the heritable disorders (newborn screening) program authorized 
through Title XXVI.
Maternal and Child Health Block Grant
    Title V of the Social Security Act, the Maternal and Child Health 
(MCH) block grant, funds community-based services such as home visiting 
and respite care for children with special health care needs. MCH 
complements Medicaid and the State Children's Health Insurance Program 
by providing ``wrap-around'' services and other needed health services. 
The March of Dimes recommends fully funding the block grant at the 
authorized level of $850 million and notes that in order to hold states 
harmless an appropriation of $807 million is required. Additional 
funding would enable states to expand critical services such as 
prenatal and infancy home visitation programs, strategy that helps 
improve birth outcomes. According to the Maternal and Child Health 
Bureau, 900,000 children with special health care needs use MCH 
services. These children would also benefit as increased resources 
would enable states to raise spending limits for home visits respite 
care, physical and occupational therapy, durable medical equipment, and 
other support services.
Consolidated Health Centers
    Consolidated (Community) Health Centers are an important source of 
obstetric and pediatric care for more than 13 million individuals, 40 
percent of whom are uninsured. The Foundation recommends new funding 
sufficient to increase the number of centers and to improve the scope 
of perinatal services provided. Adding funds to this program would be 
consistent with the President's 5-year plan to create and expand health 
center sites in 1,200 communities and to increase the number of 
patients served annually to more than 16 million.
    Thank you for the opportunity to testify on the federally supported 
programs of highest priority to the March of Dimes. The Foundation's 
staff and volunteers look forward to working with Members of the 
Subcommittee to improve the health of mothers, infants and children.

       MARCH OF DIMES FISCAL YEAR 2005 FEDERAL FUNDING PRIORITIES
                        [In millions of dollars]
------------------------------------------------------------------------
                                                     Fiscal year
                                            ----------------------------
                  Program                                 2005 March  of
                                                 2004          Dimes
                                               funding    recommendation
------------------------------------------------------------------------
National Institutes of Health (Total)......     27,878.0       30,666.0
    National Institute of Child Health &         1,242.0        1,366.0
     Human Development.....................
    National Human Genome Research                 479.0          527.0
     Institute.............................
    National Center on Minority Health and         192.0          211.0
     Disparities...........................
Centers for Disease Control and Prevention       6,972.0        8,100.0
 (Total)...................................
    Center on Birth Defects and                    113.0      \1\ 160.0
     Developmental Disabilities............
        Regional Centers for Birth Defects           7.3           17.3
         Research & Prevention.............
        State Cooperative Agreements to              4.1            7.5
         Improve Birth Defects Tracking....
        Folic Acid Education Campaign......          2.5            5.0
    Immunization...........................        644.0          824.0
        Polio Eradication..................        106.4          106.4
    Safe Motherhood/Infant Health (NCCDPHP)         54.0           74.0
        Pregnancy Risk Assessment                    7.1           12.0
         Monitoring System.................
        Prevention Research (Preterm Birth)          1.3           16.3
    National Center for Health Statistics..        128.0          181.0
Health Resources and Services                    6,600.0        8,000.0
 Administration (Total)....................
    Maternal and Child Health Block Grant..        730.0          850.0
        Newborn Screening..................          2.0           25.0
    Newborn Hearing Screening..............         10.0           10.0
    Consolidated (Community) Health Centers      1,617.0        1,867.0
    Healthy Start..........................         98.0           98.0
Agency for Healthcare Research and Quality.        304.0          390.0
------------------------------------------------------------------------
\1\ Fiscal year 2005 funding recommendation includes $22 million
  transfer of the Hereditary Blood Disorders Division and $25 million in
  new funding.

                                 ______
                                 
             Prepared Statement of the NephCure Foundation
            summary of recommendations for fiscal year 2005
  --A 10 percent increase for the National Institutes of Health and the 
        National Institute of Diabetes and Digestive and Kidney 
        Diseases (NIDDK).
  --Continue to expand the NIDDK Nephrotic Syndrome (NS)/Focal 
        Segmental Glomerulosclerosis (FSGS) research portfolio by 
        aggressively supporting grant proposals in this area and 
        encouraging the National Center for Minority Health and Health 
        Disparities (NCMHD) to initiate studies into the incidence/
        cause of NS/FSGS in the African-American population.
  --The NephCure Foundation enthusiastically supports the Scientific 
        Conference/Workshop being sponsored by the National Institute 
        of Diabetes & Digestive & Kidney Diseases (NIDDK). The workshop 
        will take place early in 2005 and will examine areas of promise 
        surrounding glomerular disease and will develop a future agenda 
        for Focal Segmental Glomerulosclerosis (FSGS) research.
  --The NephCure Foundation encourages follow up to the 2005 scientific 
        workshop in hopes that it will initiate grant proposals focused 
        on achieving the goals and opportunities developed by the 
        workshop.
    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 am Ed Hearn, former Major League Baseball Player for the Kansas 
City Royals. My career as a professional athlete came to an abrupt end 
in 1988, when I was diagnosed with Focal Segmental Glomerulosclerosis 
(FSGS), a debilitating and degenerative kidney disease. Today, after 
two life-changing kidney transplants, a successful bout against cancer, 
the aid of a breathing machine each night, a $3,000 IV once a month, 
and $40,000 of medication per year, I live to tell my story and to 
speak for those suffering from FSGS. My hope is that we can find the 
means to prevent this life-threatening disease from affecting our youth 
and from jeopardizing the normalcy of their lives as it has mine and 
many others. I remain hopeful that a cure for FSGS will be discovered, 
but until then, we must focus on prevention.
            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 do not know why 
glomerular injury occurs and they are not sure how to stop its 
inevitable destruction of the kidney.
    When I was a teenager, doctors found protein in my urine and told 
me that some day I might have kidney trouble. I thought ``Fine, maybe 
I'll have to deal with that when I'm an old man down the road.'' Some 
day happened much sooner than anyone expected. I believe that because I 
was a highly-conditioned athlete--and catchers are more conditioned 
than most--my body initially masked the symptoms of FSGS.
    My first kidney transplant lasted more than 7 years until the FSGS 
returned. I received a second kidney from my aunt in 2000, but my body 
rejected it almost immediately, and I received a third transplant in 
May 2002. My story is not unique; there are thousands of other people 
in this country who have had their lives disrupted due to the sudden 
onset of FSGS.
    We are extremely thankful that an NIDDK-funded clinical trial began 
this year to study the efficacy of the current treatments for FSGS, and 
that ancillary studies are underway to examine tissue samples of 
injured glomerulus. However, these clinical trials hold no particular 
hope for patients who suffer from FSGS.
    As children are most often affected by this disease, there are 
thousands of young people who are in a race against time, hoping for a 
treatment that will save their lives. The NephCure Foundation today 
raises its voice to speak for them all, asking you to take specific 
actions that will aid our quest to find the cause and the cure of NS/
FSGS.
    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 resulting Nephrotic Syndrome 
causes loss of protein in the urine and symptoms such as edema, a 
swelling that often appears first in the face. For example, many 
physicians mistake children's puffy eyelids as an allergy symptom. 
Stories of similar misdiagnoses are common at our Foundation. With 
experts projecting a substantial increase in Nephrotic Syndrome in the 
coming years, there is a clear need to educate pediatricians and family 
physicians about glomerular disease and its symptoms.
    The NephCure Foundation has numerous education programs underway, 
including patient education seminars; the most recent of which took 
place in May 2003. News of our most recent activities can be found on 
our web site at www.nephcure.org. However, our efforts alone are not 
enough.
    NIDDK launched a major federal outreach program early in 2002--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 populations
    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 expanding the NS/FSGS 
research portfolio by requesting that the National Center for Minority 
Health and Health Disparities seize the opportunity to establish 
research into the phenomenon of glomerular disease within the African 
American community.
                      more basic science is needed
    The current FSGS clinical trials which follow an estimated 400 
patients over a 3-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) has agreed to 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. These trials are an ancillary study in conjunction with the 
first-ever national medication trials of FSGS treatment that may 
possibly lead to better understanding of the more common Nephrotic 
Syndrome, which can be a precursor to FSGS.
    We enthusiastically support NIDDK in sponsoring a scientific 
workshop/conference to take place early in 2005, with the intent to 
review the most promising existing science in glomerular disease, and 
focus on methods of translating this scientific information into 
improved patient care. This goal is consistent with the NIH Roadmap to 
Research initiative developed by NIH Director, Dr. Elias Zerhouni.
    We sincerely believe that the workshop will expose opportunities 
and challenges in glomerular disease research, and evaluate the 
resources needed to carry out these opportunities and challenges. The 
workshop/conference will lend hope to the thousands of young people 
whose kidneys and lives are threatened by this terrible disease, and 
give meaning and honor to their heroic stories.
    The NephCure Foundation encourages follow up to the scientific 
workshop/conference in hopes that it will generate grant proposals 
focused on achieving the research goals and opportunities developed by 
the workshop.
    We anticipate the potential for a Program Announcement and the 
potential for a Special Emphasis Program Announcement resulting from 
the conference or some other traditional mechanism to generate grant 
proposals. These mechanisms to encourage investigator initiated grant 
proposals should help to continue to expand the NS/FSGS portfolio at 
NIH.
    Mr. Chairman, as you know, patient support and advocacy groups such 
as the NephCure Foundation work closely with medical research 
organizations. They share a mutual understanding that unless major 
research efforts are undertaken, advances and improvements in the 
health of patients will not occur. Every year, the NephCure Foundation 
participates in advocating increased funding for the NIH and NIDDK. We 
want to reiterate how deeply grateful we are for your leadership and 
that of the subcommittee on medical research matters, which means so 
much for the health of the people in our nation.
    I will be pleased to answer any questions you may have.
                                 ______
                                 
     Prepared Statement of the Digestive Disease National Coalition
              summary of fiscal year 2005 recommendations
  --Provide increased funding for the National Institutes of Health 
        (NIH) at 10 percent for fiscal year 2005. 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 2005.
  --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) Hepatitis Prevention and Control activities.
  --$30 million for the Centers for Disease Control and Prevention's 
        (CDC) National Viral Hepatitis Roundtable 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 $30 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 
$5.25 billion, $2.01 billion, and $4.77 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 2005.
                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 2005. 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:
  --It is reported more by women than men;
  --It is the most common gastrointestinal diagnosis among 
        gastroenterology practices in the United States;
  --It is a leading cause of worker absenteeism in the United States; 
        and
  --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 2 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 First Candle/Sudden Infant Death Syndrome 
                                Alliance
              summary of fiscal year 2005 recommendations
  --Provide a 10 percent increase for fiscal year 2005 to the National 
        Institutes of Health (NIH) and a proportional increase of 10 
        percent to the individual institutes and centers, specifically, 
        the National Institute of Child Health and Human Development 
        (NICHD).
    --Transition from NICHD's successful SIDS 5-year research plan to a 
            more comprehensive plan focusing on SIDS, stillbirth, and 
            miscarriage.
  --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 (HRSA).
  --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.
    Mr. Chairman and members of the Subcommittee, thank you for again 
allowing First Candle/SIDS Alliance the opportunity to submit testimony 
to this Subcommittee. First Candle is a national voluntary health 
organization uniting parents, caregivers, and researchers nationwide 
with government, business, and community service groups. Our mission is 
to promote infant health and survival during the prenatal period 
through 2 years of age through advocacy, education, and research, while 
at the same time providing compassionate grief support to those 
affected by an infant death.
    Mr. Chairman, we still need your help, commitment, and support to 
help solve the mysteries of Sudden Infant Death Syndrome (SIDS) and 
stillbirth and ensure healthy pregnancies for all women.
    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 the infant's brain, which is thought 
to control the heart and lung functions. In these cases, the 
irregularity may hamper normal respiratory activity. While this may not 
be the sole cause of SIDS, it could contribute 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 50 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 1 month and 1 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.
    Stillbirth is the death of an infant in-utero past 20 completed 
gestational weeks. The majority of these deaths occur at or near full-
term; therefore, otherwise healthy babies die shortly before or during 
birth. There are more than 26,000 parents in the United States alone 
that experience a stillbirth annually, and it is estimated that nearly 
two-thirds of all stillbirth deaths remain unexplained. This translates 
to more than 70 stillborn babies delivered in the United States each 
day. More than half of these deaths are at 28 weeks or more gestation, 
and one in five full term babies are stillborn.
    In spite of these statistics and the impact stillbirth has on 
families, little attention has been paid to the problem. There is a 
dire need for increased public awareness and federal funding to support 
stillbirth research and education programs. In 2003, NICHD committed $3 
million to conduct five projects, which focus on central data 
collection and research protocols for stillbirth deaths. First Candle 
urges the Subcommittee to support continued funding for stillbirth 
research at NICHD.
    First Candle 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 Five-Year SIDS 
Research Plan to ensure that NICHD can continue to address critical 
SIDS research initiatives and expand on their recent funding for 
stillbirth research. Specifically, First Candle is supporting a funding 
increase of 10 percent for NIH overall, and a 10 percent increase for 
NICHD. 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 
tragedies of SIDS and stillbirth.
    First Candle urges the Subcommittee to support infant death 
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 parents and 
families.
               highlights of federally funded activities
National Institute of Child Health and Human Development (NICHD)
    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, 
NICHD has developed and implemented three SIDS Five-Year Research 
Plans. Now that NICHD is focusing more globally on infant health, First 
Candle is encouraging the institute to transition from their successful 
SIDS 5-year research plan to a more comprehensive plan focusing on 
SIDS, stillbirth, and miscarriage.
Maternal and Child Health Bureau (MCHB)
    First Candle 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 runs 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 who 
        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's long term goal to ensure 
that all states fully adopt and implement the protocol. To help realize 
this goal, First Candle 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 caregivers 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. Staggering statistics and the critical need for public 
awareness and research into the scope and causes of stillbirth has led 
to the joining together of parents and professionals to formally 
advocate for research into the causes and prevention of pre-term infant 
death. Now is the time for research into the horrible tragedy of 
stillbirth that too frequently becomes the outcome of a seemingly 
normal pregnancy.
    On behalf of the thousands of families who have been devastated by 
the loss of a baby to SIDS, stillbirth, or miscarriage and the millions 
of concerned and frightened parents, I ask for your support, and thank 
you again for allowing First Candle to submit this testimony.
First Candle/Sudden Infant Death Syndrome Alliance
    First Candle/SIDS Alliance is an organization of parents and 
friends of SIDS, Stillbirth and Other Infant Death victims along with 
medical, business, and civic groups who are concerned about the health 
our 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, Stillbirth and 
Other Infant Death to the level of societal concern appropriate to one 
of our nation's major causes of infant mortality.
                                 ______
                                 
          Prepared Statement of the National Sleep Foundation
              summary of fiscal year 2005 recommendations
  --Provide a 10 percent increase for fiscal year 2005 to the National 
        Institutes of Health (NIH) and a proportional increase of 10 
        percent to the individual institutes and centers, specifically, 
        the National Heart, Lung, and Blood Institute (NHLBI).
  --Urge the National Center on Sleep Disorders Research (NCSDR) to 
        partner with other federal agencies, such as the Centers for 
        Disease Control and Prevention (CDC), and voluntary health 
        organizations, such as the National Sleep Foundation (NSF), to 
        develop a collaborative sleep education and public awareness 
        initiative.
    Mr. Chairman and members of the Subcommittee, thank you for 
allowing me present testimony today on behalf of the National Sleep 
Foundation or NSF. I am Dr. James Walsh, Chairman of the Board of 
Directors of the National Sleep Foundation, Executive Director of the 
Sleep Medicine and Research Center affiliated with St. John's Mercy and 
St. Luke's Hospitals, and Clinical Professor of Psychiatry at St. Louis 
University. The National Sleep Foundation is an independent, non-profit 
organization whose mission is to enhance public awareness about the 
need for sufficient restorative sleep, to increase the detection and 
treatment of sleep disorders, to foster sleep-related programs and 
policy for the betterment of public health, and to promote sleep 
research. We work with thousands of sleep medicine and other health 
care professionals, researchers, patients, drowsy driving victims 
throughout the country, and collaborate with many government and 
private organizations with the goal of preventing health and safety 
problems related to sleep deprivation and untreated sleep disorders.
    Sleep problems, whether in the form of medical disorders, or 
related to work schedules and a 24/7 lifestyle, are ubiquitous in our 
society. At least 40 million Americans suffer from sleep disorders; yet 
more than 60 percent of adults have never been asked about the quality 
of their sleep by a physician, and fewer than 20 percent have ever 
initiated such a discussion. Millions of individuals struggle to stay 
alert at school, on the job, and on the road. The latest estimates from 
the National Highway Transportation Safety Administration and the 
Federal Motor Carriers Safety Administration implicate fatigue and 
sleepiness in 1.1 million crashes annually. A recent study in Sweden 
showed that sleep disturbances are the second greatest risk factor for 
fatal accidents at work. Sleep apnea, a sleep-related breathing 
disorder which affects at least 5 percent of adult Americans, is 
closely related to some of America's most pressing health problems, 
such as obesity, hypertension, heart failure, and diabetes. Chronic 
insomnia, experienced by 10 percent of our population is a strong risk 
factor for depression and other widespread mental health conditions. 
Sleep disorders, sleep deprivation, and excessive daytime sleepiness 
add approximately $15 billion to our national health care bill each 
year. The National Center on Sleep Disorders Research estimates that by 
the year 2050, sleep problems will affect as many as 100 million 
Americans.
    Sleep science has clearly demonstrated the importance of sleep to 
health and well being, yet research studies continue to show that 
millions of Americans are at risk for the serious health, safety 
consequences of sleep disorders and inadequate sleep. Moreover their 
quality of life suffers and the personal and national economic impact 
is staggering. NSF believes that every American needs to understand 
that good health includes healthy sleep, just as it includes regular 
exercise and balanced nutrition. We must elevate sleep to the top of 
the national health agenda. We need your help to make this happen.
    Our biggest challenge is bridging the gap between the outstanding 
scientific advances we have seen in recent years and the level of 
knowledge about sleep held by health care practitioners, educators, 
employers, and the general public. This gap in knowledge is being 
discussed as I present this testimony today, by hundreds of concerned 
professionals. Yesterday and today, the National Center on Sleep 
Disorders Research, the National Heart, Lung, and Blood Institute, and 
the Trans-NIH Sleep Research Coordinating Committee are sponsoring a 
translational conference entitled ``Frontiers of Knowledge in Sleep and 
Sleep Disorders: Opportunities for Improving Health and Quality of 
Life.'' This two-day program has assembled health care providers, 
public health and education experts, policy makers, patient advocacy 
organizations, sleep medicine specialists, and other stakeholders. It 
is intended to address how information about sleep and sleep disorders 
can translate into improvements in public health and safety using cost-
effective, comprehensive, and broadly-applied strategies for education, 
societal change, and improved sleep-related health care.
    This conference is an important step in translating research into 
practice and into a broad-based public health message. The development 
of a sleep education and public awareness initiative would serve as a 
key legacy for the sleep translational conference and provide a forum 
for dissemination of the outcomes of the sleep translational 
conference. The National Sleep Foundation has been leading the way on 
public education regarding sleep and sleep disorders since it was 
founded in 1990. NSF and others have done a lot, but so much more needs 
to be done in order to educate the public and actually change behavior. 
Because resources are limited and the challenges great, we think 
creative and new partnerships need to be created to address the issues 
that are before us.
    Therefore, we recommend that The National Center on Sleep Disorders 
Research be encouraged to partner with other federal agencies, such as 
the Centers for Disease Control and Prevention, and voluntary health 
organizations, such as NSF, to develop an ongoing, inclusive mechanism 
for public and professional awareness on sleep, sleep disorders, and 
the consequences of fatigue. Such a collaboration between federal 
agencies and voluntary health organizations would create an opportunity 
for dramatically improving public health and safety as well as the 
quality of life for millions, if not all, Americans.
    Thank you again for the opportunity to present testimony before you 
today. I would be pleased to address any comments or questions.
                                 ______
                                 
   Prepared Statement of the International Foundation for Functional 
                       Gastrointestinal Disorders
              summary of fiscal year 2005 recommendations
  --Provide a 10 percent increase, to $30.8 billion, for fiscal year 
        2005 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 $1.85 billion.
  --Continue to accelerate funding for extramural clinical and basic 
        functional gastrointestinal research at NIDDK.
  --Continue to urge NIDDK to develop a strategic plan setting research 
        goals on IBS and functional bowel diseases and disorders.
  --Urge NIDDK to develop a standardization of scales to measure 
        incontinence severity and quality of life and to develop 
        strategies for primary prevention of fecal incontinence 
        associated with childbirth.
  --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 at the National 
Institutes of Health.
    IFFGD, the International Foundation for Functional Gastrointestinal 
Disorders, has been serving the digestive disease community for 13 
years. We work to broaden the understanding about functional 
gastrointestinal and motility disorders in adults and children.
    Through publications, professional symposia, and other means IFFGD 
addresses issues and raises awareness about disorders and diseases that 
many people are uncomfortable and embarrassed to talk about. Bowel 
conditions are often hidden in our society. Not only are they 
misunderstood, but the burden of illness and human toll has not been 
fully recognized.
    The majority of the diseases and disorders we address have no cure. 
We have yet to completely understand the pathophysiology of the 
underlying conditions. Many patients face a life of learning to manage 
chronic illnesses that are often accompanied by pain and a variety of 
gastrointestinal symptoms. The costs associated with these diseases are 
great; 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 and every aspect of daily 
life. In essence these diseases reflect lost potential for the 
individual and society.
                           fecal incontinence
    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 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.
    Causes of fecal incontinence are many and may include damage to the 
anal sphincter muscles, nerve damage, loss of storage capacity in the 
rectum, chronic diarrhea, or pelvic floor dysfunction. People who have 
fecal incontinence may feel ashamed, embarrassed, or humiliated. 
Society is not tolerant of loss of bowel control. Some individuals with 
incontinence don't want to leave the house out of fear they might have 
an episode of incontinence in public. Most try to hide the problem as 
long as possible and may not reveal it to their own doctor unless 
asked. Isolation adds to the burden of illness as these individuals 
withdraw from friends and family, and social support.
    In November 2002, IFFGD sponsored, with NIH support, a 
multidisciplinary consensus conference--``Advancing the Treatment of 
Fecal and Urinary Incontinence Through Research: Trial Design, Outcome 
Measures, and Research Priorities.'' The proceedings were disseminated 
in the January 2004 Supplement of Gastroenterology, the journal of the 
American Gastroenterological Association. Among other outcomes, the 
conference resulted in six key research recommendations to address 
currently unmet needs:
    1. More comprehensive identification of quality of life issues 
associated with fecal incontinence and improved assessment and 
communication of treatment outcomes related to quality of life.
    2. Standardization of scales to measure incontinence severity and 
quality of life.
    3. Assessment of the utility of diagnostic tests for affecting 
management strategies and treatment outcomes.
    4. Development of new drug compounds offering new treatment 
approaches to fecal incontinence.
    5. Development and testing of strategies for primary prevention of 
fecal incontinence associated with childbirth.
    6. Further understanding of the process of stigmatization as it 
applies to the experience of individuals with fecal incontinence.
                     irritable bowel syndrome (ibs)
    IBS affects between 25 and 45 million people of all ages in the 
United States (an estimated 10 to 15 percent of the population). The 
disorder affects people of all ages, even children. Approximately 60 to 
65 percent of IBS sufferers in the United States are reportedly female 
and 35 to 40 percent are male. 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 frequent 
bowel movements, and/or hard or infrequent bowel movements. Although 
the cause of IBS is not understood, it is becoming clear that this 
disease needs a multidisciplinary approach in research.
    Similar to other chronic illnesses and depending on severity, IBS 
can be emotionally and physically debilitating. Because of persistent, 
unpredictable, and often painful bowel symptoms, maintaining work or 
academic schedules becomes challenging. Individuals who suffer from 
this disorder may distance themselves from social activities and even 
may fear leaving their home.
    In the House and Senate Fiscal Year 2004 Labor, Health and Human 
Services, and Education Appropriations bills, Congress recommended that 
the National Institute of Diabetes and Digestive and Kidney Diseases 
(NIDDK) develop an IBS strategic plan. The development of a strategic 
plan on IBS would greatly increase the institute's progress toward the 
needed research on this functional gastrointestinal disorder.
                 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. However, periodic heartburn is a symptom so 
common that many people overlook its potential to cause tissue damage 
and disease. This is unfortunate because, through awareness and a 
diagnosis, individuals can receive one of several treatment options 
available for GERD. Untreated, GERD may lead to severe complications 
such as inflammation, stricture, or Barrett's esophagus, a potentially 
pre-cancerous condition.
    Gastroesophageal reflux, involving regurgitation of gastric 
contents into the esophagus, affects as many as one-third or more of 
all full term infants born in America each year, but generally resolves 
by 6 to 12 months of age. Gastroesophageal reflux disease (GERD) 
results when symptoms persist or tissue damage occurs. Medical therapy 
may then be required in order to control the disease, which in infants 
commonly manifests as symptoms such as regurgitation with poor weight 
gain, esophagitis, respiratory symptoms, or irritability. In children 
and adolescents, the natural history of GERD is similar to that of 
adult patients, in whom GERD 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 it may be more prevalent in individuals who 
develop Barrett's esophagus. Diagnosis usually occurs when the disease 
is in an advanced stage; early effective screening tools are needed.
                  gastrointestinal motility disorders
    Gastrointestinal motility disorders can affect any part or parts of 
the gastrointestinal tract. Gastroparesis, chronic intestinal pseudo-
obstruction (CIP), and Hirschsprung's disease, are just a few examples 
of gastrointestinal motility disorders.
    Gastroparesis is a painful disorder where the nerves to the stomach 
are damaged or stop working, which leads to the stomach taking too long 
to empty its contents. Symptoms of gastroparesis can include: nausea, 
vomiting, early satiety or an early feeling of fullness when eating, 
weight loss, abdominal bloating, and abdominal discomfort. This 
disorder is often a complication of diabetes. An estimated 20 percent 
of people with type 1 diabetes develop gastroparesis. Individuals with 
type 2 diabetes can also develop gastroparesis.
    Approximately, 200 new cases of Chronic Intestinal Pseudo-
Obstruction or CIP are diagnosed in American children each year. This 
rare and serious disorder occurs when coordinated contractions, or 
peristalsis, in the intestinal tract become altered and inefficient. 
When this happens, nutritional requirements cannot be adequately met. 
CIP is often life threatening and treatment challenging. Continued 
clinical and basic research is needed before the disease is fully 
understood, and improved treatment or ultimately a cure found.
    Hirschsprung's disease (HD) is a serious and sometimes life-
threatening congenital disorder that is caused by absence of nerve 
cells in the rectum and/or colon, which can cause obstruction, 
inflammation, and severe constipation. It occurs in about one out of 
every 5,000 American children born each year. The treatment is 
primarily surgical to remove the abnormal bowel. Approximately 10-20 
percent of children with HD will continue to have complications 
following surgery. These complications include infection, fecal 
incontinence, and persistent constipation.
  functional gastrointestinal and motility disorders and the national 
                          institutes of health
    The International Foundation for Functional Gastrointestinal 
Disorders recommends an increase to $30.8 billion or 10 percent for NIH 
overall, and a 10 percent increase for NIDDK, or $1.85 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 (GI) 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 functional GI and motility disorders.
    A primary goal of IFFGD's mission is to ensure that advancements 
concerning GI disorders result in improvements in care and the quality 
of life of those affected. As we all work together, it is hoped this 
goal will be realized and the suffering and pain millions of people 
face daily will end.
    Mr. Chairman, on behalf of millions of patients and the families of 
those with functional GI or motility disorders thank you for your 
consideration.
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 Hepatitis Foundation International
              summary of fiscal year 2005 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 2005. 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.
  --$41 million in fiscal year 2005 for a hepatitis B vaccination 
        program for high risk adults at CDC as recommended by the 
        National Hepatitis C Prevention Strategy.
  --$40 million in fiscal year 2005 for CDC's Prevention Research 
        Centers.
  --Continued support of the National Viral Hepatitis Roundtable.
    Mr. Chairman 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 a
    The hepatitis A virus (HAV) is contracted through fecal/oral 
contact (i.e. fecal contamination of food, or diaper changing tables if 
not cleaned properly), and sexual contact. In addition, eating raw or 
partially cooked shellfish contaminated with HAV can spread the virus. 
Children with HAV usually have no symptoms; however, adults may become 
quite ill suddenly experiencing jaundice, fatigue, nausea, vomiting, 
abdominal pain, dark urine/light stool, and fever. There is no 
treatment for HAV; however, recovery occurs over a 3 to 6 month period. 
About 1 in 1,000 with HAV suffer from a sudden and severe infection 
that may require a liver transplant. Luckily, a highly effective 
vaccine can prevent HAV. This vaccination is recommended for 
individuals who have chronic liver disease (i.e. HCV or HBV) or 
clotting factor disorders, in addition to those who travel or work in 
developing countries.
                              hepatitis b
    Hepatitis B (HBV) claims an estimated 5,000 lives every year in the 
United States, even though 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. Additionally, 
there are significant disparities in the occurrence of chronic HBV-
infections. Asian Americans represent four percent of the population; 
however, they account for over half of the 1.3 million chronic 
hepatitis B cases in the United States. Current treatments have limited 
success in treating the chronically infected and there is no treatment 
available for those who are considered ``HBV carriers.'' Preventive 
education and vaccination are the best defense against hepatitis B.
                              hepatitis c
    Infection rates for hepatitis C (HCV) are at epidemic proportions. 
Unfortunately, as many are not aware of their infection 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 
education and treatment of those who are infected serve as the most 
effective approach in halting the spread of this disease.
                         prevention is the key
    Only a major investment in immunization and preventive education 
will bring these diseases under control. All newborns, young children, 
young adults, and especially those who 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, health care professionals, and substance abuse 
        counselors 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 2005 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 2005.
                        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 for NIH in fiscal year 2005. 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.
    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 Charles R. Drew University of Medicine and 
                                Science
            summary of recommendations for fiscal year 2005
  --A 10 percent increase for all institutes and centers at the 
        National Institutes of Health (NIH), 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 NCI to continue to support the establishment of collaborative 
        minority health comprehensive cancer centers at historically 
        minority institutions in collaboration with existing NCI cancer 
        centers. Continue to urge NCRR and NCMHD to collaborate on the 
        establishment of a cancer center at a historically minority 
        institution.
  --Urge the Department of Health and Human Services, particularly the 
        Office of Minority Health (OMH), to develop a focused effort on 
        faculty support to address the residency training programs at 
        minority medical institutions.
    Mr. Chairman and members of the subcommittee, thank you for the 
opportunity to present you with testimony. 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 outcomes for a multitude of 
major diseases in minority and underserved communities continue to 
plague this nation that was built on a premise of equality. As 
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 15 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 our 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.
    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).
           academic renewal and clinical faculty recruitment
    Some of the major challenges faced in sustaining high quality 
graduate medical education programs in ``safety-net'' medical centers 
with missions focused on the medically underserved, are directly 
related to the lack of sufficient numbers of clinical faculty highly 
trained in academic medicine. To address these challenges, a plan for 
academic enrichment is proposed.
    The plan is a strategic initiative to position Charles R. Drew 
University in the first decade of the 21st Century, as a leader in 
Urban Academic Health Sciences with an emphasis on training physicians 
and other health professionals to meet the needs of the medically 
underserved. The Plan for Academic Enrichment is an opportunity to 
enhance the impact of Charles R. Drew University as a national center 
of excellence in meeting the national, state, and local challenge of 
preparing a diverse complement of excellent physicians and other health 
professionals to close the health disparity gap by affording culturally 
sensitive quality care to the medically underserved and economically 
disadvantaged. A central component of the plan is the enrichment of 
academic excellence through the recruitment of new, highly qualified 
clinical teaching faculty, with solid research skills, to be members of 
the Charles R. Drew College of Medicine faculty to strengthen both the 
graduate and undergraduate medical education programs.
                               conclusion
    Despite our knowledge about racial/ethnic, socio-cultural and 
gender-based disparities in health outcomes, the ``gap'' continues to 
widen in most instances. 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. This is a critical loss of untapped potential in both 
physical and intellectual contributions to the entire society.
    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 paucity 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.
    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. We also look forward to working with the Department of 
Health and Human Services to address the residency training program 
issues at Charles R. Drew University.
    Mr. Chairman, thank you for the opportunity to present on behalf of 
Charles R. Drew University of Medicine and Science.
                                 ______
                                 
               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 more 
than 289 chapters across the country and in Canada. We visit patients 
in about 460 hospitals throughout the United States. I have been 
appointed by the group to assist in this lobbying effort--a volunteer 
position.
    More than 28 years ago, I was diagnosed with a rare heart disease. 
After having severe chest pains and trouble breathing for more than 2 
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. An estimated 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 60 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. Eight 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 2005 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, more than 930,000 
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.
                                 ______
                                 
        Prepared Statement of the American College of Cardiology
                              introduction
    The American College of Cardiology (ACC) is a 30,890 member non-
profit professional medical society and teaching institution whose 
mission is to advocate for quality cardiovascular care--through 
education, research promotion, development and application of standards 
and guidelines--and to influence health care policy. The College 
represents more than 90 percent of the cardiovascular specialists 
practicing in the United States. The ACC submits for the record this 
statement of support for increased funding for heart-related research 
through the National Heart, Lung, and Blood Institute (NHLBI) in fiscal 
year 2005, as well as support for increased funding for the Agency for 
Health Care Research and Quality (AHRQ), education and awareness 
programs through the Centers for Disease Control and Prevention (CDC) 
State Heart Disease and Stroke Prevention Program, and state and local 
programs designed to increase public access to automated external 
defibrillators (AEDs).
    The ACC expresses its appreciation to Congress for successfully 
completing the doubling of the NIH budget by fiscal year 2003. Although 
the increase in funding has greatly benefited cardiovascular-related 
research, the National Institutes of Health (NIH) still invests only 8 
percent of its budget on heart research and a mere 1 percent on stroke 
research--a funding level that fails to reflect that 40 percent of all 
deaths in this country are attributable to cardiovascular disease. The 
ACC appreciates current budget constraints, but hopes this subcommittee 
will continue its commitment toward medical research funding and the 
improvement of public health in the fiscal year 2005 budget. According 
to a recent study conducted by MEDTAP International and co-sponsored by 
the ACC, national health advancements since 1980 are due primarily to 
investments in health care, and for each additional dollar spent in the 
United States for health care services $2.40 to $3.00 in tangible gains 
have been made.
    The ACC, however, is concerned that President Bush's proposed 
fiscal year 2005 budget calls for only a 2.6 percent increase above 
fiscal year 2004 levels for the NIH and only a 0.3 percent increase for 
the CDC's Heart Disease and Stroke Prevention Program. Low-level 
funding increases for NIH, in addition to inadequate funding levels 
proposed in the President's budget for enhanced public access to AEDs, 
and the flat-funding proposed for the AHRQ, is of great concern to the 
ACC and its members.
    Cardiovascular disease continues to claim more lives each year than 
the next seven leading causes of death combined. Recent data shows that 
in 2001 more than 64 million Americans were shown to have suffered from 
at least one form of cardiovascular disease, of which nearly 1 million 
died as a direct result. The overall (indirect and direct) cost of 
cardiovascular disease for 2004 is estimated to be at least $368.4 
billion. Heart disease is not only tragically rampant in the United 
States, but it is also financially burdensome. The ACC believes that 
further investment in life-saving research, as well as in education and 
awareness programs, is essential to combat the leading cause of death 
of men and women in this country.
    The ACC Supports the Following fiscal year 2005 Appropriations 
Funding Levels:
  --NIH (overall funding)--$30.6 billion
  --NHLBI--$3.5 billion (includes $2.1 billion for heart- and stroke-
        related activities)
  --AHRQ--$443 million
  --CDC State Heart Disease and Stroke Prevention Program--$80 million
  --Community and Rural AED Access--$45 million
                            medical research
    The ACC believes that the federal government must expand its 
financial commitment to medical research, most specifically at the 
NHLBI, through support for the NIH and its new ``NIH Roadmap'' 
initiative which was initiated at NIH to help identify major 
opportunities and gaps in biomedical research and allow for greater 
collaboration between all NIH institutes. Increased NHLBI funding over 
the years has allowed investigators to develop better diagnostic tools 
and surgical techniques, as well as study new methods of treatment for 
cardiac patients. We must aim for better patient prevention, early 
cardiovascular disease diagnoses, and improved treatment of our 
patients. As such, the ACC is particularly supportive of initiatives 
related to clinical cardiology and issues of clinical relevance to the 
practice of cardiology. The ACC also firmly believes in the value of 
promoting clinical investigative careers and of large-scale clinical 
trials which aid the discovery and application of therapeutic and/or 
medical treatments to cardiovascular disease. In addition, the ACC 
would like to stress the importance of funding the AHRQ at a level that 
allows for their continued application of research to cardiovascular 
care. AHRQ activities play a large role in ensuring that our members 
can provide patients with the most up-to-date and effective treatments 
available.
Research Success Due to Past Legislative Investment in NHLBI
    Another major advancement during the NIH doubling was with the 
implementation of a major clinical trial testing approaches to lowering 
the risk of cardiovascular disease in adults with Type 2 diabetes. 
Seventy percent of Americans diagnosed with Type 2 diabetes ultimately 
die of cardiovascular disease. The ACC is quite concerned about the 
cardiovascular health impact of diabetes and obesity in Americans, 
particularly in children. This trial, referred to as Action to Control 
Cardiovascular Risk in Diabetes (ACCORD) evaluates the effects of 
intense blood sugar control along with very aggressive control of blood 
pressure and lipids. The overall goal of ACCORD is to discover a better 
treatment for those suffering from Type 2 diabetes than is presently 
available. The ACC is pleased to see research attention being paid to 
the correlation of diabetes and metabolic syndromes with cardiovascular 
disease, because this devotion of resources helps to gain a better 
understanding of and treatment methods for these debilitating diseases.
Research Success Due to Investments in Women and Heart Disease
    This year, more women than men will die from cardiovascular 
disease, making the inclusion of women in more heart-related research 
studies absolutely integral. Since 1984, men have experienced a decline 
in deaths due to cardiovascular disease, yet despite a growing number 
of female-specific research initiatives, women have not yet experienced 
this decline.
    To this end, the ACC is proud to be participating in several 
national campaigns this year that help raise awareness about the 
incidence and morbidity of heart disease and stroke in women, including 
the NHLBI's The Heart Truth, and the American Heart Association's ``Go 
Red for Women.'' In addition, on February 20, 2004, the ACC teamed with 
the Sister to Sister Foundation for its National Woman's Heart Day to 
help provide free screenings, educational seminars, cardiovascular 
health information, and fitness and cooking demonstrations to women 
around the country. The ACC is pleased that new clinical studies are 
underway at NIH that will hopefully help clarify the gender differences 
that directly affect diagnosis and treatment of women with heart 
disease.
            Women's Health Initiative
    Thanks to Congress' financial commitment during the doubling of the 
NIH budget, the NHLBI was able to proceed with the Women's Health 
Initiative (WHI) which yielded the first conclusive evidence of risks 
associated with long-term estrogen plus progestin hormone replacement 
therapy (HRT). This groundbreaking discovery changed the delivery of 
care for millions of American women and raised the public's awareness 
regarding heightened risks for heart attack, stroke and/or blood clots 
during long-term HRT use. The ACC was pleased by the findings yielded 
through the WHI and would like to see continued research focused on the 
unique causes and outcomes of heart disease in women. The ACC also 
believes that only through randomized clinical trials can we fully 
understand how medicines and devices affect human health.
            Women's Ischemia Syndrome Evaluation
    The Women's Ischemia Syndrome Evaluation (WISE) Study is a four-
center, NHLBI study evaluating approximately 1,000 women referred for 
elective diagnostic coronary angiography because of suspected ischemia, 
a shortage of oxygen and blood to the heart muscle. It is the largest 
NIH-funded study dedicated solely to women, with the goal of examining 
the nature and scope of gender differences in both chronic and acute 
cardiac ischemia.
    Prior reports suggested that, compared with men, clinical 
manifestations of ischemic heart disease in women appear approximately 
10 or more years later. Women demonstrate more symptoms suggesting 
ischemic heart disease, yet the symptoms in women, such as chest 
discomfort and dyspnea, are more difficult to interpret.
    There is now a better snapshot of the extent of cardiovascular 
disease in women, thanks to WISE Study findings revealed at the ACC 
Annual Scientific Session in March 2004 (ACC 2004) by Barry L. Sharaf, 
M.D., F.A.C.C. Based on the 4-year, risk-adjusted outcomes by extent of 
coronary disease, there was a 9.4 percent death or myocardial 
infarction (MI) rate (or about 2.7 percent annually) in women with 
minimal or no symptoms of disease detected by angiography. This is an 
unacceptable event rate. In another presentation by Leslee J. Shaw, 
Ph.D., at ACC 2004 regarding the WISE Study, the estimated lifetime 
cost of care for cardiovascular disease detected by angiography was 
detailed. Dr. Shaw found that women with no disease detectable by 
angiography have in excess of three-quarters of a million dollars 
lifetime costs for care. In an era of shrinking health care resources, 
such a high cost is unsustainable. This high rate of death or 
myocardial infarction, combined with escalating health care costs, 
clearly demonstrates the need for improved detection of cardiovascular 
disease in women.
    The ACC believes it is imperative to increase awareness among women 
about their risk of heart disease. Thanks to findings yielded from the 
WISE Study, cardiovascular specialists are gaining a better 
understanding that there is a ``female-pattern'' of ischemia-related 
symptoms that is distinct from that seen in men. Cardiologists have 
also come to understand that a ``clean'' angiogram in symptomatic women 
does not mean a benign outcome. The ACC believes that the WISE Study 
discoveries are a good start in unraveling the mystery of women and 
heart disease, but more research looking at issues like concealed 
plaque and inflammation in the vessel wall, the prognostic ability of 
blood markers, and the role of the microvasculature, needs to be 
conducted.
NHLBI Research Opportunities Threatened by President's Fiscal Year 2005 
        2.5 Percent Funding Increase
    Much progress has been made in cardiovascular research and clinical 
trials to this date, but the ACC believes that if the numbers proposed 
in the President's fiscal year 2005 budget are instituted new and 
exciting opportunities could be postponed if not cancelled, and the 
continuation and/or expansion of current NHLBI cardiovascular research 
programs could also be threatened. The ACC encourages Congress to take 
necessary steps to avoid such a predicament through funding the NHLBI 
at $3.5 billion in fiscal year 2005, so that the following 
fundamentally important programs among others have a chance of 
development.
            Enhancing the Use of Longitudinal Data on Cardiovascular 
                    Disease and its Risk Factors in Older Adults: The 
                    Cardiovascular Health Study (CHS)
    This initiative would allow for continued utilization of the data 
and specimens collected during the CHS study which began in 1987 and is 
set to terminate in 2005. Specifically, the initiative would ensure 
access to CHS data and specimens to the entire scientific community and 
allow for continued follow-up of study participants. Investigators are 
particularly interested in the research and treatment of cardiovascular 
disease in elderly patients (age 75 and older), a focus area which 
could be enhanced through the use of longitudinal data obtained by the 
CHS.
            Randomized Trial of Heart Failure (HF) Management
    ACC believes that the incorporation of clinical practice methods 
and provider education into NHLBI trials benefits not only 
cardiovascular patients but also the cardiologists who translate new 
therapies into regular cardiovascular care techniques. This trial is a 
perfect example of a mutually beneficial initiative. The multi-center/
randomized trial would assess costs, quality of life, physician 
compliance, and patient adherence to prescribed treatments in order to 
identify and disseminate clinically useful and effective tools for 
translation of proven therapies for HF into clinical practice.
            Community-Responsive Interventions to Reduce Cardiovascular 
                    Risk in American Indians and Alaska Natives
    Despite the fact that American Indians and Alaska Natives are 
disproportionately affected by cardiovascular diseases, the President's 
2.5 percent budget increase for NHLBI in fiscal year 2005 is inadequate 
for fostering the development of preventative intervention into 
community health care systems or through other health care means within 
American Indian and Alaska Native communities. If instituted within the 
fiscal year 2005 budget cycle, this NHLBI program would work to find 
solutions to obesity, diabetes, and cardiovascular diseases within 
these minority communities.
Priority Research Programs at NHLBI for Fiscal Year 2005
    The NHLBI finds new and innovative methods for yielding research 
and clinical trial results year after year. These results, when 
translated into practice, ensure that cardiovascular specialists and 
other health care providers are able to provide patients with the 
highest quality care possible. 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. The research priorities set forth by the 
NHLBI are a direct result of input from health care community, 
including that of ACC members. The ACC believes it is imperative to 
appropriately fund the NHBLI in fiscal year 2005 so that the NHLBI can 
continue to create and implement ground-breaking cardiovascular 
research.
    Last year, the ACC recommended the implementation of an NHLBI 
program titled ``Overweight and Obesity Prevention and Control at the 
Worksite,'' which would support the design and testing of innovative 
worksite intervention to prevent and control overweight and obesity in 
adults. Almost two-thirds (61 percent) of American adults are 
overweight or obese, and each year an estimated 300,000 American adults 
die of causes related to obesity. The ACC is pleased that this program 
has officially gained NHLBI recognition and is being considered for 
implementation in fiscal year 2005. Some of the strategies within the 
program include implementing environmental and policy changes to 
increase employees' physical activity, offering healthful food choices 
in cafeterias and vending machines, and enhancing social support from 
fellow workers to encourage improved diet and physical activity. The 
ACC encourages Congress to concur with this NHLBI-recommended program 
and allow for full funding of the ``Overweight and Obesity Prevention 
and Control at the Worksite'' in fiscal year 2005.
    Currently there is a growing need to address cardiovascular 
infections caused by the bacterium Staphylococcus aureus, commonly 
referred to as Staph infections, following cardiac surgery. The ACC 
believes that there is great value in fully funding the NHLBI-proposed 
``Clinical Trials for the Prevention and Treatment of Infections after 
Cardiac Surgery'' parallel randomized clinical trials. These trials 
would provide conclusive evidence of the need for improved control of 
Staph infections by assessing the costs and benefits of new 
antibacterial strategies. Due to the serious risk of infection 
following cardiac surgery, the ACC hopes that increased funding for the 
NHLBI will allow these important trials to be conducted.
    Collaboration among federal agencies has proven an effective and 
efficient means for enhancing research, facilitating appropriate 
regulation, and providing accurate clinical outcomes data. An 
``Interagency Registry of Mechanical Circulatory Support for Heart 
Failure'' would create a registry of mechanical circulatory support for 
heart failure, as well as an associated tissue repository for shared 
use by all related federal agencies. Such a registry would help 
standardize reporting of patient characteristics, indications, 
implantation procedures, and adverse events. With increased funding for 
NHLBI in fiscal year 2005, such collaboration will be possible.
AHRQ--Moving Research into Practice
    The research and education developments that the federal government 
has facilitated are remarkable and promising. However, the best 
research is of no value if it never reaches the patient. The 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. 
The research facilitated by the AHRQ provides reliable information on 
health care outcomes, quality, cost, use, medical errors, and access, 
enabling the public to make better-informed decisions about health 
care. The ACC regularly works with AHRQ to create and disseminate 
cardiovascular clinical practice guidelines. Having the AHRQ address 
some of the evidence to practice issues remains a critical step in 
evaluating the utility of practice guidelines.
    For example, in fiscal year 2000, AHRQ released the ``Translating 
Research into Practice II (TRIP II)'' request for applications (RFA). 
The response to this RFA was overwhelming, so much so that currently 13 
studies are underway due to this initiative. TRIP II specifically 
focuses on increasing the frequency of partnerships between researchers 
and health care systems and organizations to heighten the effect of 
practice-based, patient outcome research in applied settings.
    Although the AHRQ remains a vital partner to both the clinical 
research community and other private sector organizations, it has not 
received a funding increase in the past two budget cycles. This 
continuous flat-funding does not allow the AHRQ to adjust to annual 
inflationary costs, nor does it provide the opportunity for new 
development or growth. The ACC is extremely concerned by this funding 
plateau particularly because of the AHRQ's central role in reviewing 
current scientific evidence and providing practical clinical 
information to the public, such as its recent work on blood pressure 
monitoring. The ACC urges Congress to support increased funding of the 
AHRQ at $443 million in fiscal year 2005.
             cardiovascular disease awareness and education
CDC State Heart Disease and Stroke Prevention Program
    Education and awareness campaigns that focus on for heart disease 
and stroke prevention are in underway at the CDC's State Heart Disease 
and Stroke Prevention Program, but progress has been stalled due to 
insufficient funding. Only 11 of the 33 designated CDC State Heart 
Disease and Stroke Prevention Programs are funded adequately enough to 
progress from the planning stage to the implementation stage. This 
program's inventive heart disease and stroke reduction/control 
programs, particularly among underprivileged Americans, would help to 
reduce the incidence and impact of cardiovascular disease as well as to 
raise awareness of secondary preventative measures.
    The State Heart Disease and Stroke Prevention Program aims to 
prevent and control heart disease and stroke risk factors including 
high cholesterol and blood pressure. Yet, the program can not reach its 
full potential for saving lives and reducing the costs associated with 
the disease unless it becomes a fully functioning national program. The 
ACC encourages Congress to approve an fiscal year 2005 funding level of 
$80 million for the Heart Disease and Stroke Prevention Program at the 
CDC. Approving this funding level would guarantee elevation of 
additional states from the planning to the implementation stage of 
their prevention programs, to continue comprehensively fund those 11 
states whose programs are underway in the ``implementation stage,'' and 
to supply the states that have yet to begin the planning stage with the 
financial means for implementation and establishment of their own State 
Heart Disease and Stroke Prevention Programs.
Public Access to AEDs
    Since its formal introduction in 1960, cardiopulmonary 
resuscitation (CPR) has been the mainstay in close-chest resuscitation 
of unresponsive cardiac attack victims. While this method is still an 
effective and recommended treatment for helping oxygenated blood reach 
the brain and organs, defibrillation through proper use of an AED is 
the only sure way to restore the heart's normal rhythm. For people 
experiencing sudden cardiac arrest, every minute counts. Unfortunately, 
for every minute that passes without defibrillation, a victim's chance 
of survival decreases by 7-10 percent. In only 8 or 10 minutes, death 
is nearly certain. The price of an AED varies by make and model, but 
typically costs around $3,000--a small price when compared with 
needless loss of life.
    AEDs accurately analyze cardiac rhythms and, if appropriate, 
deliver an electric lifesaving countershock. AEDs are widely used by 
trained emergency personnel and first responders such as firefighters 
and police personnel. Thanks to the growing body of evidence that 
``public access defibrillation,'' or PAD, can decrease the amount of 
time between cardiac arrest and defibrillation, there has been a 
concerted effort to expand public access to AEDs and to improve 
training and education on these lifesaving devices. AEDs can now be 
found in most high-traffic public areas including schools, shopping 
malls, airports and convention centers.
    The ACC appreciates Congress' continued attention to the importance 
of public access to AEDs with the passage of several legislative 
initiatives over the past few years including the ``Automatic 
Defibrillation in Adam's Memory Act'' (Public Law 108-41), the ``Rural 
AED Act,'' the ``Cardiac Arrest Survival Act,'' and the ``Community 
Access to Emergency Defibrillation Act.'' While the ACC appreciates the 
Congress' commitment to this important issue, the financial commitment 
to Community and Rural AED programs dwindled in the fiscal year 2004 
budget despite the urging of the ACC and the AHA. Community and rural 
AED programs were grouped together and funded at less than $12 million, 
collectively in fiscal year 2004. The ACC is quite concerned that the 
benefits brought to communities around the country through increased 
access to AEDs could go unrealized if AED programs are not funded at a 
higher level in the fiscal year 2005 budget. The ACC, therefore, urges 
Congress to fund community and rural AED public access programs at $45 
million in fiscal year 2005.
                               conclusion
    The ACC is optimistic about what the future holds for the treatment 
and prevention of cardiovascular disease. The potential for work 
completed through the NHLBI, the CDC State Heart Disease and Stroke 
Prevention Programs, and the AHRQ, is enormous with a strong financial 
commitment from this subcommittee. The ACC encourages the subcommittee 
to continue its investment in cardiovascular research and educational 
programs within the fiscal year 2005 budget and appreciates the 
opportunity to share its views on this important topic.
                                 ______
                                 
   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 18 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 for 
Vascular Surgery; 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; Mended Hearts, Inc.; National Stroke 
Association NASPE/Heart Rhythm Society; Society of Interventional 
Radiology; Society for Vascular Surgery; amd WomenHeart: the National 
Coalition for Women with Heart Disease.
    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 funding for heart and 
stroke research.
    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 and his livelihood, 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 4.8 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 $1 million.
    About 700,000 Americans will suffer a stroke this year costing this 
nation an estimated $54 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.
                                 ______
                                 
          Prepared Statement of the Cooley's Anemia Foundation
                                subject
    Both Alicia and Michael are Cooley's anemia patients. In their 
testimony, they will point to the research successes and the need to 
continue the focus on the most scientifically opportune fields of 
research. Alicia will describe the tragic impact of the inability of 
some patients to comply with the excruciating treatment regimen for the 
disease and Michael will request the subcommittee's help in supporting 
blood safety surveillance through the CDC and other important research 
at the NIH.
                              alicia somma
    Good morning, Mr. Chairman. My name is Alicia Somma. Michael 
Giammalvo and I both have Cooley's anemia, a fatal genetic blood 
disease for which there is currently no cure. Michael is going to 
describe to the subcommittee what treatment for Cooley's anemia, or 
thalassemia (which is the medical name) is like, and I am going to tell 
you the story of my friend Nick who simply could not stand to undergo 
the treatment.
                           michael giammalvo
    Good morning, Mr. Chairman. My name is Michael Giammalvo and I am 
13 years old. I was born with Cooley's anemia, which is a fatal genetic 
blood disease. Because my body cannot produce red blood cells like most 
other people's do, I have to receive a blood transfusion every two 
weeks. Getting a blood transfusion that frequently is not fun, but I 
have to do it to stay alive.
    The problem with this treatment is that it creates a very bad side 
effect. When people receive blood transfusions as much as Alicia and I 
do, the iron that is in the transfused blood goes into our bodies. The 
body does not know how to get rid of it, so it builds up in the heart 
and the liver.
    To get rid of the iron, patients have to infuse a drug called 
Desferal. It is in a pump that we wear. The drug is pumped through a 
needle that we have to insert under our skin. Most Cooley's anemia 
patients have to infuse Desferal five days a week for 8-12 hours at a 
time. The needle hurts. I sometimes can't go to my friends' houses for 
sleepovers or do other things that other kids do.
    There are times when I really don't want to take the Desferal and I 
make it hard on my parents. And, some patients, especially ones who are 
a little older than me--teenagers--just stop taking it. Alicia will 
tell you about somebody who did that.
                                 alicia
    Mr. Chairman, this is the first time I have spoken in public about 
what happened to my friend Nick Alessi--so please bear with me if this 
is a little hard for me.
    As a child growing up with this fatal illness, it's difficult not 
to feel different. Being the only kid in your class making regular 
week-long trips to the hospital, you can't help but feel alone. Nick 
made that feeling go away for me. Going to get treated and seeing him 
there showed me that I wasn't the only person with Cooley's anemia. 
Sitting in that infusion room, he and I became friends, and he made my 
life normal.
    Constantly updated on each other's health, when I heard Nick hadn't 
been compliant with our nightly treatment, I was crushed, almost as if 
it had happened to me. Over time, he grew very ill, the overloaded iron 
began attacking his heart, and we all knew he was in danger. I spoke 
with his father often, giving him advice on how to deal with this 
enormous obstacle.
    We decided that I should talk to Nick myself, regardless of the 
awkwardness I'd feel, because his condition was getting worse everyday. 
We arranged to have dinner together and discuss his problems, but 
unfortunately, I never got that chance to have that dinner and I never 
got the chance to save my childhood friend. We had all tried our 
hardest to save Nicholas Alessi, and we all failed. It's just hard to 
convince someone that you have to do something so barbaric to yourself 
to save your own life. Dealing with this has been immensely difficult, 
knowing that it could all be prevented. As I said, Nick was my friend 
and now he is gone.
    Mr. Chairman, NIH does research on using non-invasive methods of 
measuring iron in our livers and hearts and on addressing other related 
issues like osteoporosis (which I have even though I am only 18 years 
old), hepatitis C (which more than one third of our patients have), and 
more. CDC spends $2.2 million to monitor the safety of the blood we 
transfuse into our bodies. The FDA is currently reviewing a drug that 
might be taken orally to remove iron, rather than the long, painful 
infusion but it is still months or years away from being available to 
all patients.
    Addressing these issues are all things that only the government can 
do. And, we would not ask this of our government if it were not so 
important. I know that you have a lot of people asking you for a lot of 
things today and that you can't do everything. But, Michael and I are 
here today to speak on behalf of Nick Alessi--because he can't be here 
to speak for himself. Thank you for all you have done and for all you 
will do in the future.
    We would be pleased to answer any questions.
                                 ______
                                 
           Prepared Statement of the Doris Day Animal League
    Chairman Specter, Ranking Member Harkin and Members of the 
Subcommittee: The Doris Day Animal League represents 350,000 members 
and supporters nationwide who support a strong commitment by the 
federal government to research, development, standardization, 
validation and acceptance of non-animal and other alternative test 
methods. We are submitting our testimony on behalf of the Society for 
Animal Protective Legislation, too. Thank you for the opportunity to 
present testimony relevant to the fiscal year 2005 budget request for 
the National Institute of Environmental Health Sciences for the Center 
for the Evaluation of Alternative Toxicological Test Methods (NICEATM) 
for the Interagency Coordinating Committee for the Validation of 
Alternative Test Methods (ICCVAM) activities for fiscal year 2005.
    In 2000, the passage of the ICCVAM Authorization Act into Public 
Law 106-545, created a new paradigm for the field of toxicology. It 
requires federal regulatory agencies to ensure that new and revised 
animal and alternative test methods be scientifically validated prior 
to recommending or requiring use by industry. An internationally agreed 
upon definition of validation is supported by the 15 federal regulatory 
and research agencies that compose the Interagency Coordinating 
Committee for the Validation of Alternative Methods (ICCVAM), including 
the EPA. The definition is: ``the process by which the reliability and 
relevance of a procedure are established for a specific use.''
                         function of the iccvam
    The ICCVAM performs an invaluable function for regulatory agencies, 
industry, public health and animal protection organizations by 
assessing the validation of new, revised and alternative toxicological 
test methods that have interagency application. After appropriate 
independent peer review of the test method, the ICCVAM recommends the 
test to the federal regulatory agencies that regulated the particular 
endpoint the test measures. In turn, the federal agencies maintain 
their authority to incorporate the validated test methods as 
appropriate for the agencies' regulatory mandates. This streamlined 
approach to assessment of validation of new, revised and alternative 
test methods has reduced the regulator burden of individual agencies, 
provided a ``one-stop shop'' for industry, animal protection, public 
health and environmental advocates for consideration of methods and set 
uniform criteria for what constitutes a validated test methods. In 
addition, from the perspective of animal protection advocates, ICCVAM 
can served to appropriately assess test methods that can refine, reduce 
and replace the use of animals in toxicological testing. This function 
will provide credibility to the argument that scientifically validated 
alternative test methods, which refine, reduce of replace animals, 
should be expeditiously integrated into federal toxicological 
regulations, requirements and recommendations.
                           history of iccvam
    The ICCVAM is currently composed of representatives from the 
relevant federal regulatory and research agencies. It was created from 
an initial mandate in the NIH Revitalization Act of 1993 for NIEHS to 
``(a) establish criteria for the validation and regulatory acceptance 
of alternative testing methods, and (b) recommend a process through 
which scientifically validated alternative methods can be accepted for 
regulatory use.'' In 1994, NIEHS established the ad hoc ICCVAM to write 
a report that would recommend criteria and processes for validation and 
regulatory acceptance of toxicological testing methods that would be 
useful to federal agencies and the scientific community. Through a 
series of public meetings, interested stakeholders and agency 
representatives from all 14 regulatory and research agencies, developed 
the NIH Publication No. 97-3981, ``Validation and Regulatory Acceptance 
of Toxicological Test Methods.'' This report, and subsequent revisions, 
has become the sound science guide for consideration of new, revised 
and alternative test methods by the federal agencies and interested 
stakeholders.
    After publication of the report, the ad hoc ICCVAM moved to 
standing status under the NIEHS' NICEATM. Representatives from federal 
regulatory and research agencies and their programs have continued to 
meet, with advice from the NICEATM's Advisory Committee and independent 
peer review committees, to assess the validation of new, revised and 
alternative toxicological methods. Since then, several methods have 
undergone rigorous assessment and are deemed scientifically valid and 
acceptable. In addition, the ICCVAM is working to streamline assessment 
of methods from the European Union (EU) that have already been 
validated for use within the EU. The open public comment process, input 
by interested stakeholders and the continued commitment by the federal 
agencies has led to ICCVAM's success. It has resulted in a more 
coordinated review process for rigorous scientific assessment of the 
validation of new, revised and alternative test methods.
                       request for appropriations
    On December 19, 2000, the ``ICCVAM Authorization Act'' which makes 
the entity a permanent standing committee, was signed into Public Law 
No. 106-545. For several years, the NIEHS has provided between $1 and 
$2.6 million per fiscal year to the NICEATM for ICCVAM's activities. In 
order to ensure that federal regulatory agencies and their stakeholders 
benefit from the work of the ICCVAM, it is important to fund it at an 
appropriate level. I respectfully urge the Subcommittee to support and 
appropriation for the NIEHS' NICEATM for ICCVAM's activities at $3.5 
million for fiscal year 2005. This appropriation request includes all 
FTEs, funding for independent peer review assessment of test methods 
and meetings of the ICCVAM and other activities as deemed appropriate 
by the Director of the NIEHS.
                 request for committee report language
    I also respectfully request the Subcommittee consider the following 
report language for the Senate Labor, Health and Human Services, 
Education and Related Agencies Appropriations bill:

    ``The Committee supports the assessment of scientific validation of 
new, revised and alternative toxicological test methods by the ICCVAM. 
The Committee urges the fifteen regulatory and research agencies 
composing the ICCVAM to use the expertise and credibility of the ICCVAM 
for assessments to obviate their individual consideration of new, 
revised and alternative test methods. The Committee also urges the 
regulatory and research agencies to incorporate scientifically 
validated new, revised and alternative test methods into their 
regulations, requirements and recommendations in an expeditious 
manner.''

    Thank you for the opportunity to submit this request on behalf of 
the Doris Day Animal League and the Society for Animal Protective 
Legislation.
                                 ______
                                 
          Prepared Statement of the Jeffrey Modell Foundation
                                subject
    Mrs. Modell will, first and foremost, thank the committee and its 
members for its past assistance and support. She will also testify in 
favor of increases in funding for the National Institutes of Health 
(NIH) and the Centers for Disease Control and Prevention (CDC). 
Concerning CDC, she will request an increase in the current program 
that provides funding for a national education and awareness program 
related to primary immunodeficiency diseases to allow the Foundation to 
expand the program to reach underserved African-American and Hispanic 
communities. Within NIH, her testimony will focus specifically on 
NICHD, NIAID and NHLBI.
    Mr. Chairman and Members of the Subcommittee: Thank you for the 
opportunity to testify before you today. I am Vicki Modell and, along 
with my husband Fred, we created the Jeffrey Modell Foundation in 1987 
in memory of our son, who died at the age of 15 as a result of a life 
long battle against one of the 100-plus primary immunodeficiency 
diseases.
    First and foremost, Mr. Chairman, I am here today to thank you and 
all the members of this committee on both a personal and a professional 
level. Personal because whenever Fred and I come to Washington, whether 
it is to testify here before the committee or to meet with the members 
of the subcommittee individually in their offices, every Member of 
Congress and every member of your staffs are unfailingly polite, 
courteous, interested and caring.
    And, professional because over the last seven years that we have 
been coming to Washington, we have been given the opportunity to build 
a partnership with the Congress, the Centers for Disease Control and 
Prevention, the National Institutes of Health, as well as with our own 
supporters in the private sector, including industry and other 
concerned donors.
    We believe that we have maximized the benefits for patients from 
the support that this subcommittee has afforded us. We are going to 
tell you a remarkable story of success, of hope, and of future 
challenges this morning.
    This subcommittee is currently funding CDC with $2.2 million for 
physician education and public awareness of immune deficiencies. The 
Jeffrey Modell Foundation operates the program under a contract with 
CDC. Although we only receive about $1.8 million of the money (CDC 
keeps the rest for its ``administrative expenses''), we have leveraged 
that money into a $15 million national campaign.
    The Foundation has raised more than $1.0 million, largely from our 
supporters in the pharmaceutical and blood-related industries. Working 
with the Ad Council and a major New York City ad firm, we put together 
a media campaign alerting families to the possibility that repetitive 
infections may indicate a deeper, underlying problem and explaining to 
parents how to get their children tested. That campaign has generated 
more than $12 million in donated media time on television and radio, as 
well as magazine ad space.
    But, the campaign has been even more than the advertising.
  --We have conducted physician symposia for CME credit all over the 
        country.
  --Working with NIH, we have produced educational materials for 
        doctors and families. We have mailed 38,000 posters--one to 
        every school nurse in the United States.
  --NICHD has mailed information to every member of the American 
        Academy of Pediatrics and the American Academy of Family 
        Practice.
  --We have developed and improved a terrific website.
    All of these steps would not be possible without the support of 
this subcommittee, but there is so much more that we can do.
    We fully recognize what a difficult appropriations year this is 
going to be. We know that, like every year, the demands on the 
subcommittee far exceed the allocation that you will likely have 
available. We also understand that our needs are small in the bigger 
picture of funding multi-billion programs like Pell Grants or the No 
Child Left Behind program. Yet, we have taken a small amount of money--
for which we are eternally grateful--and generated $7 of private money 
for every $1 of government money.
    Mr. Chairman, one of the great unmet needs in our education and 
awareness program is underserved African American and Hispanic 
populations. Any such program concerning an undiagnosed disease needs 
to make special provisions for reaching these groups. You need to seek 
time on different radio stations, different television networks, and 
space in different magazines.
    Yet we know that this must be done. If you visit the Emergency Room 
at our home hospital in New York--Mount Sinai--then you visit the 
infusion room operated by the Department of Immunology, you see two 
very different populations. Yet the research tells us that there is not 
an ethnic component to this disease. That means that the visible 
differences relate to our medical system, not the incidence of disease.
    We are prepared to take on this challenge, much as this Congress 
has been willing to address the problems of health disparities through 
the NIH and elsewhere. We believe that we can begin to make a dent in 
the problem by increasing the funding available for this program to 
$2.7 million from $2.2 million.
    Mr. Chairman, as you know, we have other interests within the 
purview of this committee, as well. We have along history of 
collaboration with NICHD, which has been our strongest supporter under 
the able leadership of Dr. Duane Alexander. We have helped to fund 
research at NIAID. We have funded post-doctoral fellows at NHGRI. We 
are now jointly funding a conference with NHLBI.
    Our interactions with these many NIH institutes has convinced us 
that further increases in their budget--to whatever level fits within 
your allocation--will be put to good use and will benefit chronically 
ill people like our patients.
    Mr. Chairman, as I said in the beginning of my remarks, Fred and I 
are very grateful. We cannot begin to thank you and the subcommittee 
enough for all of the support and encouragement that we have received 
from you whenever we come to Washington. While we may never be able to 
repay all your kindnesses, you should know that the work that you do 
enables the work that we do. And, every young person who is diagnosed--
early and properly--and then receives treatment is a young person who 
life is better for what you have done.
    Thank you again. I would be pleased to answer any questions.
                                 ______
                                 
   Prepared Statement of the American Association for Dental Research
                                summary
    Dental research is concerned with the prevention, causes, 
diagnosis, and treatment of diseases and disorders that affect the 
teeth, mouth, jaws, and related systemic diseases. Dental health is an 
important, vital part of health throughout life.
                              introduction
    I am Dr. Michael Alfano, Dean of the New York University School of 
Dentistry. This testimony I am presenting is on behalf of the American 
Association of Dental Research (AADR). The AADR is a non-profit 
organization with over 5,000 individual members and 100 institutional 
members within the United States. AADR's mission is to enhance the 
quality and scope of oral health, advance research and increase 
knowledge for the improvement of oral health, and increase 
opportunities for scientific changes.
    Mr. Chairman and members of the Committee, we want to thank you for 
this opportunity to testify about the exciting advances in oral health 
sciences. I would like to discuss our fiscal year 2005 budget 
recommendations for the National Institute of Dental and Craniofacial 
Research (NIDCR).
                                overview
    Oral health is an important component of health. Good teeth and 
healthy gums for chewing and appearance, as well as taste buds and 
saliva to enjoy food and facilitate speech, all make major 
contributions to quality of life. Over the years, discoveries stemming 
from dental research have reduced the burden of oral disease for many 
Americans--although much remains to be done to reduce further the 
prevalence of oral diseases and their impact on overall health and 
well-being, as identified in Surgeon General (SG) David Satcher's 
Report of 2002: Oral Health in America and reinforced by current SG 
Richard Carmona in his 2003 National Call to Action to Promote Oral 
Health.
    Of even broader interest, however, the oral cavity also offers 
intriguing potential as a diagnostic window to the rest of the body--
potential being pursued by the National Institute of Dental & 
Craniofacial Research (NIDCR). In fact, the Director of the National 
Institutes of Health, Dr. Elias Zerhouni, believed the potential for 
salivary diagnostics was so promising that he allocated some of his 
discretionary funds toward this research. Dr. Zerhouni has also 
complimented the NIDCR for its salivary research as exemplifying the 
type of interdisciplinary research that will be necessary to improve 
overall health outcomes for patients.
               saliva as a diagnostic and monitoring tool
    Saliva is the protective fluid of the oral cavity. With its vast 
supply of microbe killers, saliva combats invading pathogens such as 
HIV and a host of bacteria associated with oral and systemic diseases. 
Antibodies directed against pathogens, such as polio and cold viruses, 
are found in saliva. Large salivary glycoproteins, called mucins, 
appear to have antiviral properties as well.
    Oral fluid is also a mirror of the body, containing many compounds 
indicating a person's health and disease status and, like blood and 
urine, its composition may be altered in the presence of disease. 
Saliva, however, may be collected in a much less invasive fashion than 
either blood or urine.
    Technologies are being developed at the NIDCR and by 
multidisciplinary teams in universities supported by grants from the 
NIDCR. These technologies offer huge clinical and commercial 
opportunity and may one day catalyze a shift in our current health 
system of disease detection to real-time health surveillance. For 
example:
  --Studies have uncovered in saliva the presence of a cancer-related 
        protein whose concentration increases in the presence of breast 
        cancer--a potential diagnostic marker for the early detection 
        of breast cancer in women.
  --Saliva is gaining value as a diagnostic aid and potential monitor 
        of disease progression in systemic disorders, including 
        Alzheimer's disease, Sjoren's syndrome (an important autoimmune 
        disease), cystic fibrosis, and diabetes.
  --Saliva is also proving to be an effective tool to monitor levels of 
        hormones and therapeutic medications.
  --Research opportunities abound to develop more sensitive and 
        specific assays to measure and understand changes in saliva 
        beyond oral and systemic diseases in areas such as genetic 
        defects, nutritional status, and age-specific changes.
                   gene therapy using salivary glands
    Gene therapy, substituting effective genes for those that are 
missing or nonfunctional and not producing needed proteins, offers hope 
for many patients, especially those who have conditions caused by a 
deficiency in a single protein, such as Type I diabetes, growth hormone 
deficiency, and hypoparathyroidism. Many of the difficulties involved 
in the delivery of such genes to internal organs can be avoided by 
incorporating functioning genes into salivary glands, which can in turn 
make the deficient protein and provide therapeutic benefit. If 
resources become available, the NIDCR is proposing an evaluation of 
gene transfer techniques in three clinical trials, involving patients 
with:
  --adult growth hormone deficiency,
  --chronic renal failure, and
  --Sjoren's syndrome and salivary gland damage.
                     biomimetics/tissue engineering
    Advances in the design of materials and an increasing understanding 
of mechanisms by which tissues of the craniofacial complex develop have 
positioned scientists to replace tissues lost as a result of 
developmental defects, pathology, or trauma. Interdisciplinary teams of 
scientists supported by the NIDCR:
  --continued to improve dental restorative and implant materials;
  --identified mechanisms to address osteoporosis and other conditions 
        by making one cell type become another, e.g., inducing more 
        bone marrow cells to become bone cells rather than fat cells;
  --discovered that the ``baby teeth,'' which children begin to lose 
        normally around age six, contain a rich supply of stem cells 
        that may have more potential for differentiation into other 
        cell types than do adult stem cells, and are identifying these 
        other cell types as funding permits; and
  --created a distinct portion of the lower jaw from rat adult stem 
        cells that is the precise three-dimensional shape of the human 
        mandibular joint.
    Researchers have long dreamed of engineering new teeth, knees, 
hips, and other body parts from a person's own tissues. Research to 
date has provided a solid base for making this dream a reality. Noting 
the ease of access to the oral cavity, Dr. Bruce Baum, a scientist at 
the NIDCR, has noted that ``the mouth is one of the best laboratories' 
in the body to study issues in human biology that go beyond dental 
research.''
                   research in patient care settings
    In November 2003, the NIDCR announced support for Dental Practice-
Based Research Networks (PBRNs) to provide an infrastructure for 
answering important clinical questions routinely faced by dental 
practitioners (http://grants.nih.gov/grants/guide/rfa-files/RFA-DE-05-
006.html). Indeed, the 2002 American Dental Association Future of 
Dentistry report specifically recommends that national clinical 
research networks be established that link treatment approaches and 
outcomes in private practice settings.
    By connecting community-based dental providers with experienced 
clinical investigators, PBRNs will enhance clinical research supported 
by the NIDCR and produce findings that are immediately relevant to 
practitioners and their patients. Because research is conducted in the 
real-world environment of dental practice, results may be more readily 
accepted by practitioners and rapidly integrated into dental practice. 
Importantly, PBRNs also provide a very cost-efficient mechanism for 
conducting clinical studies, because they use existing personnel and 
the infrastructure of established dental practices.
                             recommendation
    The National Institute of Dental and Craniofacial Research (NIDCR) 
is the leading agency supporting research in the oral and craniofacial 
area. NIDCR has already begun investing in all of the above areas, but 
the Institute needs additional funding if these initiatives are to 
become a reality. It is requested that an appropriation of $420,000,000 
be provided for NIDCR in fiscal year 2005 to launch a major initiative 
to complete the development of the technology for using saliva as a 
low-cost, non-invasive, diagnostic instrument; to pursue gene therapy 
using the salivary glands; to accelerate efforts in biomaterials and 
tissue engineering (regeneration of teeth and other body parts); and to 
develop fully the recently announced Dental Practice-based Research 
Networks initiative.
    In fiscal year 2005, the AADR also supports an appropriation of 
$30.6 billion for the NIH overall, $20,000,000 for CDC's Division of 
Oral Heath, $182,000,000 for the CDC's National Center for Health 
Statistics, and $443,000,000 for the Agency for Healthcare Research & 
Quality.
                                 ______
                                 
     Prepared Statement of the Society for Maternal-Fetal Medicine
    Mr. Chairman and Members of the Committee, I am James Ferguson, 
M.D., President of the Society for Maternal-Fetal Medicine. We 
appreciate the opportunity to testify before this Committee and are 
most appreciative of the support you have provided over the years to 
the National Institutes of Health, in particular the National Institute 
of Child Health and Human Development.
    The Society for Maternal-Fetal Medicine (SMFM), established in 
1977, is a subspecialty organization, which was formed to promote 
research and education on issues that may confront a high-risk pregnant 
mother or unborn fetus. The SMFM has a very strong interest in 
improving pregnancy outcome through basic, translational and clinical 
research. Only through research can complications involving the mother 
or unborn fetus be understood, treated, prevented, and eventually 
solved.
    Maternal-Fetal Medicine is a subspecialty within Obstetrics and 
Gynecology. Maternal-Fetal Medicine subspecialists pursue an additional 
2 to 3 years of fellowship training following completion of their 4 
year residency program in Obstetrics and Gynecology. Maternal-Fetal 
Medicine subspecialists provide consultative services to obstetricians, 
while in other cases they actually assume direct care responsibility 
for the special problems that high-risk mothers or high- risk fetuses 
face. The special problems faced by these mothers may lead to death, 
short-term or in some cases life-long problems for their babies. For 
example:
  --Preeclampsia.--Preeclampsia is a dangerous condition characterized 
        by high blood pressure and the presence of protein in the 
        urine. It complicates 3 to 4 percent of pregnancies, strikes 
        without warning and is a leading cause of maternal and fetal 
        death. In some cases, the condition may progress to eclampsia, 
        a series of potentially fatal seizures. Although the high blood 
        pressure and seizures can be treated, the only cure for 
        preeclampsia is delivery of the baby. Surviving infants are at 
        increased risk for preterm birth, may be undergrown or have 
        serious disorders requiring neonatal intensive care.
  --Preterm Birth.--Preterm birth (Premature delivery) complicates 
        approximately 10 percent of births and is a direct contributor 
        to over 75 percent of the infant deaths and substantial newborn 
        mortality and morbidity. Despite decades of committed research, 
        the physiologic mechanisms underlying the onset of the process 
        of giving birth, either preterm or term, have yet to be clearly 
        identified.
  --Stillbirth.--When fetal death occurs after 20 weeks or more 
        gestation, it is referred to as stillbirth. For many parents 
        who hear the heartbreaking news that their baby has died in the 
        womb, the loss is completely unexpected. Half of all 
        stillbirths occur in pregnancies that appear to be problem-
        free. While 14 percent of fetal deaths occur during labor and 
        delivery, 86 percent of fetal deaths occur before labor begins. 
        The only warning the pregnant woman may have that there is a 
        problem is that the baby suddenly is no longer moving or 
        kicking. The most common known causes of stillbirth include: 
        placental problems, birth defects, growth restriction and 
        infections. But for at least half of all stillbirths, the cause 
        remains undetermined. Despite the significant and persistent 
        burden of stillbirth, the phenomenon has remained largely 
        unstudied.
  --Abnormal fetal growth.--Abnormalities in the regulation of fetal 
        growth may result in newborns that are significantly overgrown 
        or undergrown and suffer complications related to the abnormal 
        growth pattern. Inadequate fetal growth may occur in the 
        absence of recognized causes e.g., maternal hypertension, 
        smoking, or inadequate nutrition, and may be associated with 
        intrauterine fetal demise or immediate neonatal and long-term 
        consequences for the infant. Excess fetal growth may occur in 
        pregnancies complicated by maternal obesity or diabetes, 
        despite appropriate nutritional counseling and insulin therapy. 
        Currently the management of under-and overgrown fetuses is 
        empirical, aimed primarily at selection of safest time for 
        delivery. There are no effective treatments to prevent or 
        reverse either intrauterine growth restriction or fetal 
        macrosomia.
  --Neonatal brain injury.--The precise cause of the majority of cases 
        of neonatal brain injury is unknown. In the past, much emphasis 
        was placed on hypoxia and ``asphyxia'' as a cause. Recent 
        studies suggest that maternal infection and subsequent fetal 
        infection may play a major role in the causation of newborn 
        brain abnormalities such as periventricular leukomalacia and 
        white matter damage.
    The National Institute of Child Health and Human Development 
(NIHCD) has been a leader in the field of maternal-fetal medicine 
research. Its commitment to basic, clinical and translational research 
has lead to new ways to treat and improve the health of pregnant women 
and infants. In the 1960's the birth weight at which infants had a 50-
percent change for survival was approximately three (3) pounds; today 
it is 1\1/2\ pounds. Research conducted and supported by the NICHD, has 
given preterm infants and their families hope for the future.
                         recent accomplishments
    NICHD supported research in maternal-fetal medicine has been 
dramatic. Great strides are being made in our understanding of 
pregnancy and its complications. Recent researching findings revealed 
that:
  --abnormal levels of two molecules found in the blood appear to 
        predict the development of preeclampsia. This observation is 
        the most promising lead yet in the pursuit of this life-
        threatening disorder. If the development of preeclampsia can be 
        reliably predicted, treatment strategies may be developed 
        before more serious problems arise.
  --women with heightened resistance to the hormone ``insulin'' in the 
        early months of pregnancy are at risk to develop preeclampsia. 
        This finding suggests that physicians may be able to initiate 
        preventive measures early in a pregnancy for women with insulin 
        resistance. The research also implicates insulin resistance as 
        a causative factor in preeclampsia; thus, it may ultimately be 
        possible to prevent preeclampsia by improving insulin 
        sensitivity in at-risk women early in a pregnancy or even 
        before conception.
  --an anti-diabetes drug, metformin, lowered the risk of a miscarriage 
        in the first trimester of pregnancy for women with polycystic 
        ovary syndrome (PCOS). The investigators had already 
        demonstrated that the drug increases blood flow in the uterus 
        and brings about changes in the uterine lining.
                 maternal fetal medicine units network
    The National Institute of Child Health and Human Development 
created the Maternal Fetal Medicine Units Network (MFMU) in 1986 to 
address major clinical questions in maternal fetal medicine and 
obstetrics, particularly with respect to the continuing problem of 
preterm birth. The Network supports 14 clinical academic institutions 
and one data center. Typically, the network has four to six studies 
and/or trials ongoing at any given time. This approach provides optimal 
efficiency and cost-effective research. Over the last year, two trials 
studying progesterone for the prevention of preterm birth in high-risk 
women and Factor V Leiden mutations have been completed. This research 
will benefit countless women at risk of preterm birth.Over the last 
year, a trial on the identification of a therapy, progesterone, that 
prevents recurrent preterm birth in high-risk women has been completed. 
This is one of the first advances in this area, despite extensive 
efforts over decades.
Areas of Need
    NICHD is at the forefront of several novel and important research 
areas, but there are still many areas that we are not close to 
understanding about maternal health, pregnancy, fetal well-being, labor 
and delivery and the developing child.
  --The next major advance in elucidating the etiology of preterm 
        delivery involves understanding the mechanism through the 
        evaluation of protein and gene expression. These techniques are 
        widely used in other medical fields, and it is imperative that 
        they are used to understand prematurity. Through these new 
        technologies, wide scale, high output genomic and proteomic 
        strategies should be used to identify mechanisms underlying 
        premature birth.
  --New tools are needed to assess fetal growth; and non-invasive 
        methods to assess changes in the uterine cervix and muscle 
        (myometrium), and placental changes over time.
  --Research should focus on the pre-pregnancy and early pregnancy 
        periods; the role of the cervix; the role of the placenta, 
        including functional mechanisms related to pregnancy outcomes 
        and fetal well-being, such as fetal growth and preterm 
        delivery.
  --Strategies for predicting preterm birth should include multivariate 
        analysis, such as that used in neural network analysis, and 
        should focus on identifying the potentially reversible changes 
        that take place prior to and during the early phase of 
        pregnancy.
  --Research should focus on the cases with highest mortality and 
        morbidity and should not be diluted by inclusion of less 
        relevant cases of preterm birth that are close to term.
  --Research is needed to:
    --develop clinical methods to identify pregnancies where delaying 
            delivery is futile or in some cases detrimental.
    --determine the effects of intervention on outcome.
    --identify the risk factors for adverse outcomes arising as result 
            of pre-eclampsia, (abruption, preterm birth) in 
            hypertensive women.
    --Understand the pathophysiologic abnormalities that lead to 
            adverse pregnancy outcome in hypertensive women.
  --Research is needed to explain the exact mechanism of how infections 
        lead to brain injury at various stages of pregnancy and brain 
        development. In addition, delineation of the biochemical 
        pathyway leading to injury may allow for interventions before 
        irreversible injury occurs.
                            recommendations
    Without a sustained and continued investment in the areas of need, 
the health of pregnant women and their babies will continue to be at 
risk. The SMFM therefore recommends:
  --An increase of 10 percent in fiscal year 2005 for the National 
        Institutes of Health, bringing its total budget to $30.6 
        billion, as supported by the Ad Hoc Group for Medical Research 
        Funding.
  --An increase of 10 percent or $1.366 billion in fiscal year 2005 for 
        the National Institute of Child Health and Human Development.
  --NICHD fully support the MFMU Network so that it can continue to 
        address important research questions, with an emphasis on 
        issues pertaining to preterm births and low birth weight 
        deliveries.
  --That the NICHD have a major initiative to focus on genomics and 
        proteomics to hasten a better understanding behind the 
        pathophysiology of premature birth, discover novel diagnostic 
        biomarkers, and ultimately aid in formulating more effective 
        interventional strategies to prevent premature birth.
  --That the NICHD fully fund the cooperative network of clinical 
        centers and data center to study stillbirth.
    Thank you Mr. Chairman and Members of the Committee for the 
opportunity to express our concerns and recommendations before this 
Committee.
                                 ______
                                 
   Prepared Statement of the National Coalition for Osteoporosis and 
                         Related Bone Diseases
    Mr. Chairman and Members of the Committee: I am Joan Goldberg, 
Executive Director of the American Society for Bone and Mineral 
Research. I am here today on behalf of the National Coalition for 
Osteoporosis and Related Bone Diseases (the Coalition). We want to 
thank you for your continued support of the National Institutes of 
Health. Without your support the scientific achievements that have 
translated into direct benefits for millions of Americans afflicted 
with bone diseases such as Osteoporosis, Osteogenesis Imperfecta and 
Paget's disease of bone could not have been possible.
    The participants of the Coalition are the National Osteoporosis 
Foundation, the American Society for Bone and Mineral Research, the 
Paget Foundation for Paget's Disease of Bone and Related Disorders and 
the Osteogenesis Imperfecta Foundation. The Coalition is committed to 
reducing the impact of bone diseases through expanded basic, clinical, 
epidemiological, and behavioral research and through education leading 
to improvements in patient care.
    What do we know about bone? One misconception is that bone is a 
static tissue. Bone is a living tissue that makes up the body's 
skeleton. It is a truly remarkable structural material, which makes it 
ideal for its function of structural support. Bone provides mobility, 
protection of vital organs, and housing of the bone marrow. It is also 
a reservoir for calcium. This dynamic and highly tuned organ 
simultaneously balances growth to achieve strength and resilience, and 
repair without overgrowth. This balance is achieved by bone remodeling. 
An imbalance in remodeling, however, leads to the debilitating bone 
diseases such as osteoporosis, paget's disease of bone and osteogenesis 
imperfecta. These diseases are responsible for a large portion of 
healthcare expenditures in the United States. For example:
  --OSTEOPOROSIS, or porous bone, is a disease characterized by low 
        bone mass and structural deterioration of bone tissue, leading 
        to bone fragility and an increased susceptibility to fractures 
        of the hip, spine, and wrist. It is a major public health 
        threat for 44 million Americans. Of the 10 million who have 
        osteoporosis, 80 percent are women. Today, 2 million men have 
        osteoporosis and almost 12 million more are at risk for the 
        disease. Men with low levels of testosterone are especially at 
        risk. This includes men being treated with certain medications 
        for prostate cancer. Osteoporosis is responsible for more than 
        1.5 million fractures annually, including over 300,000 hip 
        fractures; 700,000 vertebral fractures; 250,000 wrist 
        fractures; and 300,000 fractures at other sites. The estimated 
        national direct expenditures (hospital and nursing homes) for 
        osteoporotic and associated fractures were $17 billion in 2001 
        ($47 million each day) and the cost is rising.
  --PAGET'S DISEASE OF BONE, the second most prevalent bone disease 
        after osteoporosis, is a chronic skeletal disorder that may 
        result in enlarged or deformed bones in one or more regions of 
        the skeleton. Excessive bone breakdown and formation can result 
        in bone that is dense, but fragile. Complications may include 
        arthritis, fractures, bowing of limbs, and hearing loss if the 
        disease affects the skull. Prevalence in the population ranges 
        from 1.5 percent to 8 percent depending on the person's age and 
        geographical location. Paget's disease primarily affects people 
        over 50.
  --OSTEOGENESIS IMPERFECTA (OI) causes brittle bones that break easily 
        due to a problem with collagen production. For example, a cough 
        or sneeze can break a rib, rolling over can break a leg. There 
        are four recognized types of OI, representing extreme 
        variations in severity and affecting 20,000 to 50,000 people in 
        the United States. In severe cases fractures occur before and 
        during birth. Undiagnosed OI may result in accusations of child 
        abuse. Besides fragile bones, people with OI may have hearing 
        loss, brittle teeth, short stature, skeletal deformities, and 
        respiratory difficulties.
  --FIBROUS DYSPLASIA is a chronic disorder of the skeleton, which 
        causes expansion of one or more bones due to abnormal 
        development of fibrous tissue within the bone. Any bone can be 
        affected, and involvement can be in one or several bones. 
        Though many bones can be affected at once, fibrous dysplasia 
        does not spread from one bone to another. At present there are 
        no approved medical therapies. Surgery is sometimes recommended 
        for severe complications.
    Another bone-related complication of bone that must be called to 
your attention is bone metastasis (cancer spreading to bone). Bone 
metastasis is a frequent complication of cancer and occurs in up to 70 
percent of patients with breast cancer and prostate cancer, and in 
approximately 15 to 30 percent of patients with lung, colon, stomach, 
bladder, uterine, rectal, and renal cancer. Bone metastases cause 
severe pain and fracture and once tumors spread to bone, they are 
incurable.
    Federal funding appropriated by the Congress has allowed the 
National Institutes of Health to conduct and support research that has 
reduced the adverse impact of bone disease on quality of life. Research 
has--
  --taught us how many Americans have low bone mass and therefore are 
        at risk for osteoporosis. These individuals can now address 
        their risk with exercise, diet, other behavioral and lifestyle 
        changes, and medication, as appropriate.
  --demonstrated that a variety of drugs currently available can reduce 
        bone loss and fractures, and even build bone.
  --led to a better understanding of calcium metabolism and, as a 
        result, manufacturers of a variety of food products have 
        fortified their products with this vital nutrient.
  --identified the necessity of vitamin D, protein, iron, etc., in 
        addition to calcium in building and maintaining strong bones, 
        while also spotlighting the major public health problem of 
        vitamin D deficiency.
  --helped us to understand the need for weight-bearing exercise to 
        build and maintain bone density and strength training to 
        increase balance and flexibility to reduce falls.
  --identified a genetic component in many bone diseases, paving the 
        way for the development of genetic approaches to diagnosis and 
        treatment.
  --decreased fracture risk and extended the lifespan for children with 
        OI.
    It is apparent that the quality of life related to bone disease is 
improving for many Americans, but much still remains to be achieved in 
areas such as:
                          diagnostics/imaging
  --DXA is an imaging test that measures bone mineral density (BMD). It 
        is the gold standard for predicting fracture risk, yet it may 
        both under-diagnose and over-diagnose patients at risk. 
        Moreover, DXA uses databases that are largely based on BMD 
        scores of white women. Relating BMD scores to fracture risk for 
        women of other racial groups and ethnicities--and doing the 
        same for men--is even more imprecise.
  --New diagnostic measures are required to predict fragility and 
        fracture risk better through assessing skeletal strength three 
        dimensionally, focusing on internal bone micro-architecture or 
        structure.
                       treatment/pharmacotherapy
  --Much attention has been focused on the Women's Health Initiative 
        study results and the risks involved in estrogen treatment. 
        However, more information is needed about low-dose estrogen and 
        its bone-protective benefits and risks.
  --Most current drug treatments for osteoporosis work by slowing down 
        the natural process of bone breakdown. PTH, a hormone, actually 
        builds bone. However, we need more studies to learn how best to 
        use the drugs currently available, for what populations, with 
        or after what drug regimens, for how long, and how best to 
        assess response and interaction with exercise and diet.
  --The discovery of new molecules with unexpected roles in modulating 
        bone mass points the way to development of other new therapies. 
        One example is leptin, a molecule made by fat cells.
  --A 5-year observational study suggested that regular intravenous 
        doses of pamidronate (a bisphosphonate) helped increase bone 
        mineral density, reduce fractures, increase mobility, and 
        decrease bone pain in children with osteogenesis imperfecta. 
        Controlled clinical drug therapy trials will enable assessment 
        of the potential use of bisphosphonate drugs to improve quality 
        of life for children and adults.
  --The discovery that tumor cells increase the number of natural-
        occuring cells that destroy bone has improved treatment and 
        quality of life for patients with bone metastases through the 
        use of drugs called bisphosphonates. However, further research 
        is needed to study the path of bone disease in breast cancer, 
        prostate cancer, multiple myeloma, and other cancers that 
        spread to bone.
  --Research is needed to improve survival and quality of life and to 
        prevent metastatic osteosarcoma for the approximately 600 
        children and teenagers in the United States who develop this 
        cancer. Specifically, research is needed to:
    --Identify new intervention targets for therapy;
    --Develop better predictors of response to osteosarcoma treatment;
    --Develop in vivo and in vitro preclinical assays to improve 
            treatment;
    --Study metastatic osteosarcoma biology compared to biology of 
            normal bone cells and that of other cancer cells.
                            novel approaches
  --Investigations into genetic approaches for bone disease are 
        critical and stem from recent findings that bone doesn't form 
        when one protein--Cbfa-1--is missing. Understanding how this 
        protein is activated or turned on may lead to new therapies for 
        bone disease.
  --The identification and study of families with very high bone mass 
        who never fracture have led to the discovery of the involvement 
        of the ``wnt pathway'' in regulating bone mass. This pathway 
        has not only become a potential therapeutic target for 
        controlling skeletal mass, but has recently been implicated in 
        the bone loss experienced in multiple myeloma (a bone- and 
        blood-related cancer).
  --Understanding the role of genes and the underlying abnormal 
        functioning of cells involved in bone breakdown in patients 
        with Paget's disease is critical to developing new treatments. 
        We need additional investigation to understand the role the 
        bone microenvironment plays in the development of Paget's 
        disease and to identify the molecular processes involved.
  --Bone marrow transplantation is being tested in the laboratory for 
        the treatment of osteogenesis imperfecta. One technique 
        requiring further development focuses on genetically 
        engineering bone precursor cells, which reside in the bone 
        marrow, so that the faulty osteogenesis imperfecta gene which 
        causes frequent fractures would be blocked or turned off. Then 
        these engineered cells could be transplanted back into the bone 
        marrow to form healthy bone.
  --The use of specific exercise regimes--such as jumping--in the 
        growing child, and of vibrating devices, for adults, represent 
        exciting avenues for continued exploration into low-cost 
        approaches to strengthen bone.
  --The potential for genetic therapy to cure osteogenesis imperfecta 
        has been demonstrated in the test tube. Suppressing the gene 
        that causes the mutant collagen must now be demonstrated in 
        animal models.
    Bone research must be considered a trans-NIH issue given that bone 
diseases can lead to or be linked to other diseases such as cancer. 
Studies are currently being supported and conducted by the National 
Institute of Arthritis and Musculoskeletal and Skin Diseases (the lead 
institute for bone research), the National Institute on Aging, the 
National Institute of Diabetes and Digestive and Kidney Diseases, the 
National Institute of Child Health and Human Development, the National 
Institute of Dental and Craniofacial Research and the National Cancer 
Institute.
    Mr. Chairman and members of the committee we are most appreciative 
of your past support for the programs of the National Institutes of 
Health. The momentum in research cannot stop. The American people are 
expecting and holding fast to the hope that one day cures will be found 
for the debilitating diseases of bone.
                            recommendations
    The National Coalition for Osteoporosis and Related Bone Diseases 
believe that improved treatments and a cures are in sight, but greater 
federal funding will be necessary if these advances are to be achieved. 
The Coalition, therefore:
  --Joins the Ad Hoc Group for Medical Research Funding in urging the 
        Committee to provide an appropriation of $30.6 billion in 
        fiscal year 2005 for the National Institutes of Health--an 
        increase of 10 percent.
  --Supports the NIAMS Coalition recommendation of a 10 percent 
        increase for the National Institute of Arthritis and 
        Musculoskeletal and Skin Diseases, the lead bone research 
        institute.
  --Supports increased funding for NIA, NIDCR, NIDDK, NCI, and NICHD, 
        other Institutes that also fund bone-related research, as well 
        as seeks additional support for bone programs at NIBIB and 
        NCAM.
  --Requests more funding for training, transitional grants and debt 
        repayment programs for young investigators and clinical 
        scientists.
    Mr. Chairman, thank you for the opportunity to testify before this 
Committee.
                                 ______
                                 
   Prepared Statement of the American Association for Cancer Research
    The American Association for Cancer Research (AACR) is the world's 
oldest, largest, and most prestigious professional society of cancer 
scientists and clinicians. The AACR embraces the mission of our 22,000 
members to advance the prevention, detection, control and cures of 
cancer through research, education, and communication.
    The AACR is the authoritative voice for those who constitute a 
continuum of cancer research. It is the work of those within this 
continuum that contributed to reduced death rates and stabilized 
incidence in lung, breast, prostate and colorectal cancers during the 
last decade. The effort to contain cancer is achievable, and the 
progress we have made is encouraging for the future.
    Research by members of the AACR will lead to new ways of 
preventing, controlling and curing cancers in people of all ages. 
Scientists are mining information from the Human Genome Project to 
discover how cells use genetic information to become cancers. 
Researchers are identifying the genes that cause cancer and are 
designing targeted drugs that help regulate those genes. Other 
molecules target the proteins that are encoded by the cancer causing 
genes. Early detection technologies that use novel imaging methods to 
find the cancer causing genes and proteins in tumors are enabling 
clinicians to devise tailored treatment strategies with better odds of 
helping patients and with fewer side effects.
    Discoveries within laboratories will aid in preventing, detecting, 
and controlling the disease of cancer, empowering cancer patients with 
a better quality lifestyle and a more productive, longer life. Some 
will be cured. Others, through novel means of early detection or 
powerful new therapeutics, will circumvent the arduous plight of 
cancer.
    Opportunities in cancer research have never been so abundant. New 
challenges await us. Those challenges stem in part from the changing 
demographics within the United States and across the world. We are an 
aging population in the United States. As we age, our risk of cancer 
increases. Only 2.2 people in every 100,000 Americans under the age of 
65 develop cancer. Once past that landmark age, 10 times that number of 
people develop cancer.
    In the next 15 years, one-fifth of the American people will become 
65 years or older. Already, 12 percent of the American population is 66 
years or older. The risk of getting cancer is compounded by the large 
number of people entering this higher risk category. The number of 
people who develop cancer is expected to grow exponentially. As a 
society, we have the opportunity to avert this pending crisis.
    Two recent actions have started us in the right direction to avoid 
a cancer crisis of epidemic proportions. The first was the recent 
completion of the 5-year doubling of the NIH budget. The second was the 
bold Challenge Goal pronounced in 2001 by the Director of the National 
Cancer Institute: To eliminate the suffering and death from cancer by 
2015. The American Association for Cancer Research supports the 
Director's challenge goal and stands ready to assist and contribute in 
any way possible to meet this challenge.
    The state of scientific knowledge and technology has never been 
greater. Continued strong investment now will allow us to accelerate 
the pace of discovery and optimize the use of existing and new 
knowledge for the development and delivery of effective new cancer 
treatments.
    Many of these opportunities are cogently set forth in A Plan and 
Budget Proposal for Fiscal Year 2005 prepared by the Director of the 
National Cancer Institute. Informally referred to as the ``Bypass 
Budget,'' this document is mandated by Congress as part of the National 
Cancer Act of 1971. Its purpose is to set forth the National Cancer 
Institute's forward-looking strategic plan to build on its research 
successes, support the cancer research workforce with the technologies 
and resources it needs, and ensure that research discoveries are 
applied to improve human health. The Bypass Budget is provided directly 
to the President for formulating the budget request to Congress. It is 
developed in close consultation with all sectors of the cancer 
community, including scientists and cancer survivors, and represents 
the NCI Director's best professional judgment on the opportunities 
available and the resources needed to optimize progress in the fight 
against cancer in that fiscal year.
    The American Association for Cancer Research strongly supports the 
concept of the Bypass Budget. It is a vital tool to generate further 
research advances. AACR has identified a series of priority areas for 
investment--within the scope of the National Cancer Institute's action 
plan--that will significantly contribute to the achievement of the 
Director's Challenge Goal.
    In core scientific areas, AACR has identified the following 
priorities:
  --Enhancing Investigator-initiated Research.--Individual 
        investigators in their laboratories and clinics are the 
        foundation stone for innovations and advances in biomedical 
        science. Their discoveries lead to better science and its 
        productive application to patient care. Yet fewer than one-
        quarter of peer reviewed and approved research grant requests 
        from these scientists are funded by the NCI. Increased funding 
        for competing research grants and resources for investigator-
        initiated research are vital to the success of the cancer 
        research enterprise.
  --Molecular Targets of Prevention, Diagnosis, and Treatment.--Some of 
        the most promising recent advances in cancer research have come 
        from our increased understanding of the molecular causes of 
        cancer. Intensified research will increase the number of 
        effective cancer interventions directed at validated targets.
  --Development of Cancer Imaging and Molecular Sensing Technologies.--
        Imaging advances are increasingly important in cancer treatment 
        and care to non-invasively assess cancer progression.
    In the area of public health, AACR includes the following among its 
priorities:
  --Research on Tobacco and Tobacco-related Cancers.--Tobacco use is 
        the leading preventable cause of death in the United States and 
        is linked to nearly one-third of all deaths from cancer. 
        Significant research investments are essential to accelerate 
        research to understand, prevent, and treat tobacco use and 
        addiction and to develop effective public health strategies to 
        combat it.
  --Research on Obesity, Physical Activity, Diet, and Nutrition.--
        Obesity may soon exceed tobacco as the primary cause of cancer. 
        Extensive further research is critical to develop effective 
        preventive strategies and interventions to protect the majority 
        of our population that is at risk.
  --Reducing Cancer-related Health Disparities.--The burden of cancer 
        falls unequally on our society, with the low-income, medically 
        underserved, elderly, and minority populations affected 
        disproportionately by the disease. Further research is urgently 
        needed to discover the causes for these disparities and to 
        develop and deliver effective interventions to eliminate them.
    In addition to the recommendations above, AACR has identified five 
other priority areas that are of key importance to accelerating 
progress against cancer:
  --Cancer Prevention.--Cancer prevention and behavioral modification 
        must be fundamental components of any realistic attempt to meet 
        the Director's 2015 Challenge Goal. Concentrated and 
        accelerated research is essential to generate new knowledge and 
        advances in this largely uncharted territory.
  --Aging and Cancer.--Close to 60 percent of all new cancers are in 
        persons older than 65. Further research is urgently needed to 
        adequately prepare for the impact of our aging population on 
        our nation's healthcare system.
  --Training Translational Researchers.--The number of physician-
        scientists who take findings from the laboratory through the 
        preclinical, clinical, and regulatory processes to the 
        patient's bedside are dwindling. This kind of translational 
        cancer research demands a high level of research skill. Managed 
        care allows very little time for physicians to engage in such 
        research, and there is minimal funding and no defined career 
        path for translational and clinical cancer researchers. 
        Increased federal funding for training is crucial to attract, 
        educate, train, and retain these clinical personnel if we are 
        to have the skilled workforce needed to defeat cancer in the 
        near future.
  --Expanding Our National Clinical Trials Program.--Patients in 
        clinical trials receive the most advanced treatment and 
        prevention approaches for their particular cancers. These 
        trials are highly cost effective; however, fewer than 5 percent 
        of adult cancer patients participate in clinical trials, as 
        compared to nearly 80 percent of children with cancer. 
        Augmented funding for the national clinical trials program is 
        necessary so that adult participation, especially by minority 
        and underserved patients, is doubled to at least 10 percent.
  --Extending the Bioinformatics Infrastructure.--The value of the vast 
        expansion of biomedical knowledge generated by today's 
        researchers will match its potential value and usefulness only 
        when it is collected, organized, integrated, stored, and made 
        readily and universally accessible to the entire research 
        community. Funding is needed to develop the state-of-the-art 
        bioinformatics infrastructure for data mining and integration 
        that is vital to accelerate research progress.
    To maintain this nation's leadership in advanced biomedical 
research, and to take advantage of the abundant opportunities for 
research progress, we ask that you provide the National Institutes of 
Health with a sufficient level of funding to sustain the research 
momentum generated by the completion of the 5-year doubling of the 
budget. NIH officials and outside experts have testified that annual 
increases of at least 10 percent are required to preserve the research 
energy that has been unleashed by the doubling.
    The cancer community is grateful for the 3.1 percent increase in 
the budget that the NIH received in 2004, but is deeply concerned about 
its impact on future progress. This is particularly troubling in light 
of the President's fiscal year 2005 Budget Request that only seeks a 
2.6 percent increase for the NIH for next year. AACR shares this 
concern and urges the Committee to move boldly to furnish the funding 
levels necessary to undertake promising new research initiatives and to 
extend ongoing cutting-edge research through 2005 and beyond.
    Specifically we urge your support to increase the budget of the 
National Institutes of Health to at least $30.61 billion in 2005. This 
10 percent increase will allow the NIH to sustain and build upon its 
research progress while avoiding the severe disruption caused by cuts 
or nearly flat funding that is less than the rate of inflation.
    We also ask that you fully fund the fiscal year 2005 Bypass Budget 
of the National Cancer Institute. At that level of funding, the NCI 
will be able to realize many of the vitally important research priority 
areas identified above and make the boldest strides possible against 
this disease. Thus, the AACR requests that the Committee fund the 
fiscal year 2005 NCI Bypass Budget request of the Director in the 
amount of $6.2 billion.
    We have made remarkable progress in cancer research since the 
passage of the National Cancer Act in 1971. Your unflagging support for 
biomedical research for more than three decades has saved millions of 
lives and nurtured the productive research careers of thousands of our 
brightest and most dedicated scientists. More than 9.6 million cancer 
survivors alive today attest to the successful achievement of many of 
the goals of the National Cancer Act. With your continued positive 
support and leadership, the cancer community will be able to capitalize 
on the research momentum to convert our discoveries and new knowledge 
into the strategies and therapies that will make the Director's 2015 
Challenge Goal a reality for all Americans.
                                 ______
                                 
         Prepared Statement of the Lymphoma Research Foundation
    I am Melanie Smith, Director of Public Policy and Advocacy for the 
Lymphoma Research Foundation (LRF). I would like to express our 
appreciation for the opportunity to submit this statement to the record 
of the Labor, Health and Human Services and Education Appropriations 
Subcommittee. The LRF is the nation's largest lymphoma voluntary health 
organization, devoted to funding lymphoma research and providing 
information about the diseases to individuals diagnosed with lymphoma 
and their families and friends.
    Our ultimate goal is to find a cure for all forms of lymphoma. To 
that end, we fund some of the world's leading lymphoma researchers at 
outstanding academic institutions. These researchers are engaged in 
research aimed at understanding the basic mechanisms of lymphoma and 
improving the current treatments for the disease. LRF also aims to 
equip those who are diagnosed with lymphoma with up-to-date information 
about treatment options. The organization sponsors educational 
conferences at which the leaders in lymphoma research and treatment 
address patients and families regarding cutting-edge research and the 
most recent developments in therapies.
                         background on lymphoma
    Lymphoma is a major health problem. This year, approximately 54,400 
cases of non-Hodgkin's lymphoma (NHL) will be diagnosed in this 
country, and more than 19,400 Americans will die from NHL. Also this 
year, 7,880 cases of Hodgkin's lymphoma will be diagnosed, and more 
than 1,320 Americans will die from the disease. Lymphoma is the most 
common form of blood cancer and the third most common form of childhood 
cancer. Nearly 500,000 Americans are living with lymphoma.
    In recent years, there have been exciting reports regarding the 
improvements in treatments for a number of forms of cancer, as well as 
reports that the incidence of cancer overall is declining. Regrettably, 
NHL stands in contrast to the general trends in cancer incidence, and 
the treatment options for NHL remain inadequate. Since the early 1970s, 
incidence rates for NHL have nearly doubled, although incidence rates 
have stabilized the last few years. And the 5-year survival rate for 
NHL stands at 57 percent. These are not satisfactory numbers, and they 
serve as measures of the work we still have to do.
                          research on lymphoma
    In recent years, we have learned a great deal about the genetic, 
molecular, and cellular basis of cancer. We do not know the cause of 
most lymphomas, but there is increasing information to suggest a link 
between environmental factors and infections and the development of 
many lymphomas. The environmental factors include chemicals, toxins, 
and ultraviolet light, and the infectious agents include simian virus-
40, hepatitis C, and Epstein Barr virus. There is also evidence that in 
some individuals, immune dysfunction is a critical factor in the 
development of lymphoma.
    Our knowledge of cancer has improved significantly in the last 
decade, in large part due to the strong commitment of Congress to the 
National Institutes of Health (NIH) and its willingness to boost NIH 
funding, year after year. These funds have supported strong basic and 
clinical researchers who are focused on unlocking the secrets to 
cancer. There is a need to sustain that commitment to NIH, in order to 
equip scientists engaged in basic research and facilitate the 
translation of basic research findings into new treatments. This is 
certainly true in the case of lymphoma. There is a need to clarify the 
interactions among the environmental, viral, and immunogenetic factors 
that contribute to development of lymphoma and to ensure the 
development of new treatments based on our enhanced understanding of 
lymphoma.
    Over the last decade, several new lymphoma treatments have been 
developed, expanding the options for those who are diagnosed with the 
disease. Lymphoma patients and researchers have clearly benefited from 
the nation's significant investment in research, and Congress deserves 
the appreciation of the community of lymphoma patients and researchers. 
Among the lymphoma treatments approved in the last decade are a 
monoclonal antibody and two different radioimmunotherapies. While we 
applaud the new treatments of the last decade, they are not a magic 
bullet; for many, lymphoma continues to be a fatal disease.
    New therapies that capitalize on different research approaches are 
currently under investigation. These include therapeutic vaccines, 
immunotherapies, and proteasome inhibitors. Other work is focused on 
refining the chemotherapy regimens and developing treatment regimens 
with lower toxicities. All of this work deserves the support of private 
and public research funders.
                    role of nih in lymphoma research
    Although LRF plays a critical and creative role in funding lymphoma 
research, NIH is, and will remain, the key player in this field. NIH is 
the pivotal player not only because of the magnitude of its financial 
commitment to lymphoma research, but also because of the role it can 
play in bringing together all of the partners in the research 
community--NIH intramural researchers, academic researchers, private 
foundations, industry, and the Food and Drug Administration (FDA).
    NIH is also in the best position to encourage, facilitate, and fund 
the translation of basic research findings into new treatments. It is 
absolutely critical that we not lose the research momentum that has 
been the result in significant part of the doubling of the NIH budget 
between 1999 and 2003. This will require much more attention to 
translational and clinical research.
    LRF recommends that NIH strengthen its lymphoma research program by 
several actions:
  --The National Cancer Institute (NCI) should boost its support for 
        translational and clinical lymphoma research. NCI should 
        evaluate its current investment in clinical research and expand 
        or initiate programs to strengthen the clinical research 
        effort.
  --NCI should also enhance its support for correlative studies of 
        tumor biology and treatment response, as well as its investment 
        in research on the late and long-term effects of current 
        lymphoma treatments.
  --The rate of payment for enrolling patients in NCI-sponsored 
        clinical trials must be increased, as the current rate is 
        inadequate to meet the costs associated with enrolling a 
        patient in a clinical trial and collecting and analyzing the 
        data associated with trial participation.
  --NCI should enhance its research effort focused on understanding the 
        complex interaction among environmental, viral and 
        immunogenetic factors that are involved in the initiation and 
        promotion of lymphoma.
  --Although NCI has historically been the lead institute in funding 
        lymphoma research, other institutes--the National Heart, Lung 
        and Blood Institute (NHLBI), the National Institute on Aging 
        (NIA), and the National Institute of Environmental Health 
        Sciences (NIEHS)--should also evaluate and improve their 
        lymphoma research programs. NIEHS has recently launched a 
        targeted program to investigate the environmental links to 
        breast cancer, and a lymphoma-focused program would be a 
        logical outgrowth of the breast cancer program.
    A strong partnership among voluntary health agencies like LRF, 
academic researchers, industry, NIH, and FDA will be optimal for 
advancing lymphoma research and improving the outlook for those who are 
diagnosed with the disease. New strategies are necessary for the rapid 
translation of basic research findings into new treatments. These 
strategies may include systems for funding collaborative research 
projects that engage researchers in multiple institutions and multiple 
disciplines, including academic researchers and industry. Private 
foundations are looking at creative means to ensure that their research 
dollars are optimized, and we encourage NIH to employ the same creative 
and flexible approaches.
role of the centers for disease control and prevention in blood cancer 
                               education
    LRF is actively engaged in providing patients and their families 
and caregivers complete and up-to-date information about lymphoma, 
lymphoma research, and lymphoma treatment options. Because of our 
strong history in this area, we were gratified when Congress authorized 
and funded a program at the Centers for Disease Control and Prevention 
(CDC) for public and patient education on blood cancers. According to 
the authorizing statute and appropriations report language, the 
appropriated funds are intended to support private sector organizations 
that are engaged in blood cancer education. We believe these funds can 
be used effectively by organizations that have extensive experience in 
these educational efforts, and we encourage Congress to fund the 
program in fiscal year 2005, for a second year, to ensure that there is 
no sudden discontinuation of a worthy educational initiative.
    LRF believes that strong partnerships will be a key feature of 
efforts to improve lymphoma treatments and provide lymphoma patients 
current information about their disease and treatment options. We 
encourage NCI to fund collaborative research ventures, and we urge CDC 
to support those private organizations that have years of experience in 
patient education. Those who receive a diagnosis of lymphoma face 
difficult choices, and we must work together to improve their options.
                                 ______
                                 
Prepared Statement of WomenHeart, the National Coalition for Women With 
                             Heart Disease
    Heart disease is the leading cause of death for American women, 
killing nearly 500,000 each year. Yet, according to a recent American 
Heart Association poll, less than half (46 percent) of women know this 
basic fact and, even more troubling, only 13 percent think that heart 
disease is their own most important health risk.
    Ignorance often has fatal consequence. Women are not educated about 
their risk factors for heart disease so often do not take the necessary 
steps, such as cholesterol and blood pressure checks, to prevent or 
intervene in the earliest stages of the disease. They also are unaware 
of the signs and symptoms of heart attacks in women, which may differ 
than those in men. As a result, they do not get to the emergency room 
quickly enough to receive life-saving treatment. Many often die at 
home.
    We ask the Subcommittee to increase funding for public education 
programs to increase women's knowledge of their heart disease risks and 
symptoms. Specifically, we urge a $10 million appropriation for NIH's 
National Heart, Lung and Blood Institute's existing ``Heart Truth'' 
campaign, which has been only modestly funded to-date. Through its 
adoption of the Red Dress as the national symbol for women and heart 
disease awareness, and the First Lady's participation in its public 
event, the campaign has put this long-ignored crucial women's health 
issue on the national agenda and is reaching thousands of women through 
its media relations and community outreach initiatives. However, a more 
significant campaign is needed to reach the millions of American women 
who are at-risk for or undiagnosed with heart disease.
    Thank you for your consideration.
    The National Coalition for Women with Heart Disease is the nation's 
only patient advocacy organization representing the 8,000,000 that aims 
to increase their quality of life and quality of healthcare through 
support, information and advocacy. It is a non-profit public charity 
headquartered in Washington, DC.
                                 ______
                                 
   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, D.C., 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 9, 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 2 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 37 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 2 weeks in the hospital and the following 4 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 4 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 4 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 6 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 2 or 3 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 15 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 6 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 10 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. An estimated 4.8 million Americans live with the 
consequences of stroke and about 1 in 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 the Illinois Neurofibromatosis, Inc.
    Thank you for the opportunity to present testimony to the 
Subcommittee on the importance of continued funding for 
Neurofibromatosis (NF), a terrible genetic disorder closely linked to 
cancer, learning disabilities, heart disease, brain tumors, and other 
disorders affecting up to 150 million Americans in this generation 
alone. Thanks in large measure to this Subcommittee's support; 
scientists have made enormous progress since the discovery of the NF1 
gene in 1990. Major advances in just the past year have ushered in an 
exciting era of clinical and translational research in NF with broad 
implications for the general population.
    I am David Evans, representing Illinois Neurofibromatosis, Inc., 
which is a participant in a national coalition of NF advocacy groups. I 
have lived with NF my entire life. Although I have not suffered any of 
NF's severe symptoms; I have experienced the social problems caused by 
being afflicted with NF. I have endured rude comments and harassment my 
entire life. On July 4, 1996 I was threatened with arrest if I would 
not leave a water park in Crestwood, Illinois. After other patrons 
complained to the owner, he informed me that I looked ``terrible'' and 
should wear a shirt or leave. I explained NF to him and assumed the 
matter was settled. Later however, he brought in the police and I was 
forced to leave. As a result of this experience I became active in 
Illinois NF, Inc. and have been on the board of directors since 1997.
                              what is nf?
    NF is a genetic disorder involving the uncontrolled growth of 
tumors along the nervous system which can result in terrible 
disfigurement, deformity, deafness, blindness, brain tumors, cancer, 
and/or death. NF can also cause other abnormalities such as unsightly 
benign tumors across the entire body and bone deformities. In addition, 
approximately one-half of children with NF suffer from learning 
disabilities. It is the most common neurological disorder caused by a 
single gene. While not all NF patients suffer from the most severe 
symptoms, all NF patients and their families live their lives with the 
uncertainty of not knowing whether they will be seriously affected one 
day because NF is a highly variable and progressive disease.
    Approximately 100,000 Americans have NF, and it appears in 
approximately 1 in every 3,500 births. It strikes worldwide, without 
regard to gender, race or ethnicity. Approximately 50 percent of new NF 
cases result from a spontaneous mutation in an individual's genes, and 
50 percent are inherited. There are two types of NF: NF1, which is more 
common, and NF2, which primarily involves acoustic neuromas and other 
tumors, causing deafness and balance problems. Advances in NF research 
will benefit over 150 million Americans in this generation alone 
because NF is directly linked to many of the most common diseases 
affecting the general population.
                        link to other illnesses
    Researchers have determined that NF is closely linked to cancer, 
heart disease, learning disabilities, memory loss, brain tumors, and 
other disorders including deafness, blindness and orthopedic disorders. 
Research on NF therefore stands to benefit millions of Americans:
    Cancer.--Research has demonstrated that NF's tumor suppressor 
protein, neurofibromin, inhibits RAS, one of the major malignancy 
causing growth proteins involved in 30 percent of all cancer. 
Accordingly, advances in NF research may well lead to treatments and 
cures not only for NF patients but for all those who suffer from cancer 
and tumor-related disorders. Similar studies have also linked epidermal 
growth factor receptor (EGF-R) to malignant peripheral nerve sheath 
tumors (MPNSTs), a form of cancer which disproportionately strikes NF 
patients.
    Heart disease.--Researchers have demonstrated that mice completely 
lacking in NF1 have congenital heart disease that involves the 
endocardial cushions which form in the valves of the heart. This is 
because the same ras involved in cancer also causes heart valves to 
close. Neurofibromin, the protein produced by a normal NF1 gene, 
suppresses ras, thus opening up the heart valve. Promising new research 
has also connected NF1 to cells lining the blood vessels of the heart, 
with implications for other vascular disorders including hypertension, 
which affects 45 million Americans. Researchers believe that further 
understanding how an NF1 deficiency leads to heart disease may help to 
unravel molecular pathways affected in genetic and environmental causes 
of heart disease.
    Learning disabilities.--Learning disabilities are the most common 
neurological complication in children with NF1. Research aimed at 
rescuing learning deficits in children with NF could open the door to 
treatments affecting 35 million Americans and 5 percent of the world's 
population. Indeed, leading researchers have already rescued learning 
deficits in both mice and fruit flies with NF1, which will benefit all 
people with learning disabilities, not just those with NF as well as 
save federal, state and local governments and school districts billions 
of dollars in special education costs.
    Deafness.--NF2 accounts for approximately 5 percent of genetic 
forms of deafness. It is also related to other types of tumors, 
including schwannomas and meningiomas, as well as being a major cause 
of balance problems.
                          scientific advances
    The progress that has been made in NF research has been nothing 
short of phenomenal. In just over a dozen years since the discovery of 
the NF1 gene, researchers are now on the threshold of developing a 
treatment and cure for this terrible disease. Scientists who previously 
had been pessimistic are now genuinely excited about engaging in 
therapeutic experimentation and the phase II clinical trials already 
being conducted by NIH. Because of NF's implication with so many other 
diseases, many NF researchers believe that NF should serve as a model 
to study all diseases. Indeed, one leading researcher has stated that 
more is known about NF genetically than any other disease.
    In just the past few years, scientists have made major 
breakthroughs bringing NF fully into the translational era, with 
treatments close at hand. These recent advances have included:
  --Phase II clinical trials on two drug therapies;
  --Developing advanced mouse models showing human symptoms;
  --Rescuing learning deficits in mice;
  --Linking NF to hypertension, which affects 45 million Americans, as 
        well as congenital heart disease; and
  --Launching natural history studies to analyze the progression of the 
        disease.
    Other advances since 1990 include:
  --The discovery of the NF1 and NF2 genes and gene products.--The NF1 
        gene was discovered in 1990 and the NF2 gene was discovered in 
        1993.
  --Determination and understanding of the functions of the NF1 and NF2 
        genes and gene products, including the discovery of new 
        pathways impacted by the NF genes and gene products. Most 
        strikingly, researchers have discovered that NF regulates both 
        the c-AMP pathway affecting learning and memory as well as the 
        ras pathway affecting cancer. This discovery, which brought 
        together cancer and neurology through NF's controlling both of 
        these related pathways, holds monumental implications for 
        finding the treatments and cures for many diseases which affect 
        a vast segment of the population.
  --Development of advanced animal models.--Researchers have developed 
        advanced mouse models which exhibit human symptoms, such as 
        malignant tumors, leukemia, and learning disabilities. Such 
        animal models provide a unique method for addressing the 
        fundamental aspects of disease development and for testing 
        therapeutic strategies. NF researchers have also developed the 
        fruit fly as a model animal organism to study not only NF but 
        many other diseases.
  --Commencement of clinical trials at NCI.--As a result of the 
        enormous progress made in NF research, NCI has already 
        commenced two clinical trials with pediatric NF1 patients, 
        including phase II trials using of farnesyl transferase 
        inhibitors and phase I trials using pirfenidone, and is 
        developing a third clinical trial.
  --Development of drug and gene therapies.--Leading NF researchers 
        have been actively engaged in developing both drug and gene 
        therapeutic experimentation in mice and fruit flies. In the 
        case of NF1, these experiments have been directly related to 
        tumor suppression and learning deficits. Researchers also 
        believe that a gene therapy for NF2 can be developed; unlike 
        other genetic forms of deafness, in which a mutation leads to a 
        development or structural abnormality in the ear for which it 
        would be difficult to envisage a treatment in the adult, NF2-
        associated deafness is potentially preventable or curable if 
        tumor growth is halted before damage has been done to the 
        adjacent nerve.
  --Rescuing learning deficits in animal models.--A paper published in 
        the January 30, 2002 edition of Nature demonstrated how 
        researchers were able to rescue learning deficits in mice with 
        the same mutation that causes NF1 in humans--disabilities once 
        thought to be irreversible. This discovery has enormous 
        implications for the 35 million Americans suffering from 
        learning disabilities. Studies on fruit flies have also 
        demonstrated that the neurofibromin protein regulates the c-AMP 
        pathway which is known to control learning and memory.
  --Development of Infrastructure.--Researchers, with the help of the 
        government, have been building expanded national and 
        international NF centers, consortia, and other infrastructure 
        for clinical and translational research and treatment.
                           future directions
    NF research has now advanced to the translational and clinical 
stages which hold incredible promise for NF patients, as well as for 
patients who suffer from many of the diseases linked to NF. This 
research is costly and will require an increased commitment on the 
federal level. Specifically, future investment in the following areas 
would continue to advance research on NF:
  --Clinical trials;
  --Development of a clinical trials network to connect patients with 
        experimental therapies;
  --Development of new drug and genetic therapies;
  --Further development of advanced animal models;
  --Expansion of biochemical research on the functions of the NF gene 
        and discovery of new targets for drug therapy;
  --Natural history studies and identification of modifier genes--
        studies are already underway to provide a baseline for testing 
        potential therapies and differentiate among different 
        phenotypes of NF; and
  --Development of NF Centers, tissue banks, and patient registries.
                 congressional support for nf research
    The enormous promise of NF research--and its potential to benefit 
tens of millions of Americans in this generation alone--has gained 
increased recognition from Congress and the NIH. This is evidenced by 
the fact that seven Institutes at NIH are currently supporting NF 
research (NINDS, NCI, NICHD, NCRR, NEI, NIDCD, and NHLBI), and NIH's 
total research portfolio has increased from $3 million in 1990 to over 
$20 million in fiscal year 2004.
    The enormous advances in NF research would not have been possible 
without Congress's continued support of the NIH, and I would like to 
personally thank the members of this Subcommittee for their leadership 
in doubling the budget of the NIH over 5 years.
    At the same time, we are concerned that the NF research portfolio 
at both the National Cancer Institute and the National Institute of 
Neurological Disorders and Strokes has declined by several million 
dollars in recent years, despite appropriations report language 
recommending a greater investment. Given the potential offered by NF 
research for progress against a range of diseases, and the completion 
of the 5-year doubling of the NIH budget, we are hopeful that NCI and 
NINDS will substantially increase NF research funding. We appreciate 
the Subcommittee's strong support for NF research dating back to 1990, 
and will continue to work with you to ensure that opportunities for 
major advances in NF research are aggressively pursued.
    This Subcommittee has long recognized that our goal should be to 
translate the promise of scientific discovery into an improved quality 
of life for all Americans. The example of the progress realized in NF 
research demonstrates the success of this vision and commitment.
    Thank you again for the opportunity to tell you of the progress and 
potential of NF research.
                                 ______
                                 
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 2005 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. 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. Of the approximately 32 million Americans who have 
attained age 65, about 5 million suffer from depression, resulting in 
increased disability, general health care utilization, and increased 
risk of suicide. Older adults have the highest rate of suicide rate 
compared to any other age group. Comprising only 13 percent of the U.S. 
population, individuals age 65 and older account for 19 percent of all 
suicides. The suicide rate for those 85 and older is twice the national 
average. More than half of older persons who commit suicide visited 
their primary care physician in the prior month--a truly stunning 
statistic.
    The 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
    In his fiscal year 2005 budget, the President proposed an increase 
of $729 million for the National Institutes of Health (NIH), which 
would bring the entire NIH budget to a level of $28.8 billion. However, 
this 2.6 percent increase over the fiscal year 2004 funding level pales 
in comparison with recent annual double-digit increases. A decline in 
adequate funding increases could have a devastating impact on the 
ability of NIH to sustain the ongoing, multi-year research grants that 
have been initiated in recent years.
    For NIMH, the President is proposing $1.421 billion for scientific 
and clinical research, a 2.8 percent increase over the agency's fiscal 
year 2004 appropriation of $1.382 billion. It is important to note that 
from fiscal year 1999 through fiscal year 2004, NIMH received increases 
that lagged behind the increases received by many of the other NIH 
institutes. Furthermore, the increase proposed by the Administration 
for NIMH for fiscal year 2005 is lower than that proposed for most of 
the other institutes at NIH. As Congress moves forward with 
deliberations on the fiscal year 2005 budget, AAGP believes that NIMH 
should receive a percentage increase that, at the very minimum, is 
equal to the average percentage 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 5-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 NIMH has recently renewed its emphasis on 
mental disorders among the elderly, and commends the recent creation of 
a new Aging Treatment and Prevention Intervention Research Branch at 
NIMH as well as the establishment 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 8 
percent from fiscal years 1995 to 1999 to a low of 6 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 a 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, AAGP would 
like the scope of this branch increased into a comprehensive aging 
branch that is responsible for all facets of clinical research, 
including translational, interventions, and disease-based 
psychopathology. Further, the branch should be given adequate resources 
to fulfill its primary mission within NIMH.
    In addition to supporting research activities at NIMH, AAGP 
supports increased funding for research related to geriatric mental 
health at the other institutes of 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), 
the National Institute on Drug Abuse (NIDA), 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 Center for 
Mental Health Services (CMHS) within the Substance Abuse and Mental 
Health Services Administration (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 fiscal years 2002, 2003 and 2004 included $5 million 
for evidence-based mental health outreach and treatment to the elderly. 
However, AAGP is extremely alarmed to see that this program was 
eliminated in President Bush's fiscal year 2005 budget proposal. 
Restoring and increasing this mental health outreach and treatment 
program must be a top priority, as it is the only Federally funded 
services program dedicated specifically to the mental health care of 
older adults.
    Originally funded in the Fiscal Year 2002 Labor-HHS-Education 
Appropriations (Public Law 107-116), AAGP worked with members of this 
Subcommittee and its House counterpart on this initiative, which was 
intended as a first step in the effort to curb the projected growth of 
older adults in America suffering from mental disorders. The House 
Appropriations Committee Report on Fiscal Year 2002 Labor-HHS-Education 
Appropriations states that $5 million should be appropriated for a 
senior mental health outreach and treatment program within CMHS and 
that the funds are ``intended to begin to address'' the predicted 
increase of older adults suffering from mental illness. Regarding the 
same program, the Senate Appropriations Committee Report states, ``The 
Committee strongly encourages CMHS to devote additional resources in 
fiscal year 2002 and subsequent fiscal years to this issue.'' 
Unfortunately, this initiative has not seen the subsequent increases 
its creators intended when Congress created this program.
    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 2004 not only be restored, but also be increased to $20 
million for fiscal year 2005.
    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 2005 funding recommendations:
    1. The current rate of funding for aging grants at NIMH and CMHS is 
inadequate. Funding for NIMH and CMHS aging-related health services 
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;
    2. Previous years' funding of $5 million for evidence-based mental 
health outreach and treatment for the elderly within CMHS was 
eliminated in President Bush's fiscal year 2005 budget proposal. To 
help the country's elderly access necessary mental health care, this 
funding must be restored and increased to $20 million;
    3. A fair grant review process will be enhanced by committees with 
specific expertise and dedication to mental health and aging;
    4. Adequate infrastructure and funding within both NIMH and CMHS 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;
    5. The scope of the recently formed Aging Treatment and Prevention 
Intervention Research Branch at NIMH should be increased to include all 
relevant clinical research, including translational, interventions, and 
disease-based psychopathology, and must receive NIMH's full support so 
it may fulfill its primary mission;
    6. 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
    7. 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 American Society for Microbiology
    The American Society for Microbiology (ASM), the largest single 
life science society with 43,000 members, is pleased to provide 
testimony in support of the nation's investment in the extraordinary 
work of the National Institutes of Health (NIH). Advances in NIH 
research have markedly intensified over the past 5 years during which 
the NIH budget has grown thanks to the foresight of Congress and the 
Administration. Robust funding increases have resulted in rapid strides 
in cutting edge research and new research tools to facilitate the 
development of vaccines, therapies and interventions that save and 
improve the lives of millions of people.
    To ensure that progress is sustained, the ASM recommends that 
Congress make research and public health a high national priority and 
provide an increase of 10 percent for the NIH for fiscal year 2005. 
Continued strong funding increases will enable NIH to accelerate and 
expand promising basic and clinical research that will lead to new 
preventions and treatments for tragic and costly illnesses and 
disabilities that continue to afflict and claim the lives of many 
people. The ASM encourages Congress to provide higher funding levels 
for research and public health that will address the alarming burden of 
disease in the United States and abroad and help prepare the nation for 
novel health threats and the next disease emergency that will 
inevitably occur in the future.
    The public health and security of the nation depend on the 
continuation of strong investments in research and public health. The 
severe acute respiratory syndrome (SARS) epidemic of 2003 highlights 
the continuing need for investment in a strong biomedical and public 
health system that is prepared to respond to emerging diseases, whether 
naturally occurring or intentionally introduced. Previous NIH 
investment in emerging diseases research has allowed expeditious 
studies of SARS to identify targets for antiviral drugs, diagnostics 
and vaccines. Not only are people at risk for chronic diseases such as 
cancer, heart disease, stroke, diabetes and Alzheimer's disease, but 
also from new and emerging infectious diseases, such as the HIV 
pandemic, highly virulent influenza viruses, West Nile Virus, hepatitis 
A and C, and the possibility of the deliberate release of disease by 
bioterrorists, which still remains a threat.
    The accomplishments and investment in biodefense research, 
facilities and resources should also facilitate defenses against 
naturally occurring infectious diseases that pose a real and present 
danger to global public health. Infectious diseases account for 26 
percent of total global mortality and are the third leading cause of 
death in the United States. Despite impressive advances in 
microbiology, old diseases remain entrenched and new ones can appear 
suddenly and spread quickly. Sufficient and sustained federal funding 
for research helps protect against these enemies to public health.
                    investigator initiated research
    Most of the budget appropriated to the NIH each year flows outside 
the agency to an estimated 212,000 research personnel affiliated with 
approximately 28,000 organizations across the United States and 
elsewhere. This extramural research community competes for NIH grants 
through a merit based peer-review process; of the growing number of 
applications each year, estimated to exceed 35,000, less than one-third 
are projected to receive NIH funding. The proposed fiscal year 2005 
budget supports an increase in the number of new and competing grants 
from 10,135 to 10,393, an additional 258 grants. Investigator initiated 
research is the primary tool by which biomedical research is funded and 
conducted and requires increased funding to take advantage of 
scientific opportunities that lead to new knowledge and its 
applications to health care.
                    nih roadmap for medical research
    Within the proposed fiscal year 2005 budget, the NIH Roadmap for 
Medical Research plan would receive $237 million, an increase of $109 
million over fiscal year 2004. Announced in September 2003, this set of 
27 initiatives actuates an agency wide commitment to maximize research 
investment through intensive, multi-disciplinary projects with high 
potential to solve serious health problems. The Roadmap realizes three 
21st-century visions of a vigorous research enterprise: building new 
pathways to discovery through new technologies, databases, and other 
resources; creating multidisciplinary research teams better prepared to 
tackle the complexities of modern research; and re-engineering clinical 
research structures to expedite the rapid translation of discoveries 
from the lab to the clinic. This trans-NIH effort is an approach that 
promises to stimulate research advances and interventions for public 
benefit.
                          biodefense research
    After the anthrax mail attacks of 2001, biodefense research has 
emerged as a major feature of the NIAID's mission to understand the 
pathogenesis of disease-causing microorganisms and host responses to 
them. NIAID scientists now are pursuing numerous countermeasures as 
therapeutics, diagnostics, and vaccines. The agency mobilizes research 
capabilities and extramural partnerships to prepare against 
``deliberately emerging disease'' outbreaks. The NIH and particularly 
the NIAID have become significant partners in the broad-based, multi-
faceted U.S. homeland security program. The fiscal year 2005 budget 
highlights the significance of NIAID biodefense efforts, with nearly 
$1.7 billion for research and infrastructure, 4.5 percent above fiscal 
year 2004's $1.6 billion.
    The biodefense agenda at the NIAID reflects a new focus on science 
based security. Basic research forms the backbone of the NIAID 
counterterrorism efforts and includes microbial physiology and ecology, 
genomics, studies of pathogenesis and host defenses, and development of 
animal disease models. Strong funding appropriations by Congress and 
the Administration over the past 2 years have made possible significant 
progress, evidenced by the more than 50 major NIAID biodefense 
initiatives now in place. Most of these initiatives are new, with 
intramural, academic, and industrial partners investigating all aspects 
of bioagents and emerging diseases. Components include expansion of the 
nation's biodefense laboratory infrastructure, enhanced communication 
and data-collecting networks, interdisciplinary studies on potential 
bioweapons, and investigations into basic mechanisms of disease and 
disease pathogens.
    In 2003 NIAID and its collaborators achieved significant successes 
in both basic and applied areas related to biodefense. A candidate 
vaccine against the Ebola virus was found to protect lab monkeys 
against the deadly disease. Other researchers discovered that the 
anthrax bacterium toxin affects host cells in a previously unknown 
manner, which will redirect some aspects of anthrax therapeutics. 
Genome sequencing projects are on going for at least one strain of 
every bacterium, virus or protozoan considered a of priority pathogen. 
This vast genomics effort includes mapping of agents for such diseases 
as anthrax, brucellosis, Q fever, plague, smallpox, and tuberculosis. 
Researchers recently developed a rapid test for measuring antibodies to 
vaccinia that is 5 to 10 times more sensitive than standard detection 
techniques. NIAID has screened more than 800 compounds for antiviral 
activity against poxviruses and two clinical trials of a new smallpox 
vaccine have been completed. The search continues for vaccines against 
a long list of pathogenic bacteria and viruses, including next 
generation vaccines against smallpox and new vaccines for plague, 
tularemia, and other viral hemorrhagic fevers.
    Current NIAID biodefense programs build upon the NIH tradition of 
creating networks of institutions and scientists best qualified to 
solve complex problems. Last year the NIAID funded 8 of the 10 planned 
Regional Centers for Excellence for Biodefense and Emerging Infectious 
Diseases Research (RCEs), at a cost of about $350 million to be 
expended over 5 years. The RCEs will be responsible for a broad range 
of basic and applied research on disease biology, vaccines, and 
antibiotics, as well as development of novel computational and genomic 
approaches. As regional centers of excellence, they also will train new 
generations of science professionals in biodefense research, provide 
facilities for area researchers, and supply facilities and support to 
first-line responders in the event of a biodefense emergency. The NIH 
also is adding new biodefense-research facilities at its own Bethesda 
campus and at other NIH locations. Last fall, NIAID construction grants 
were awarded to leading universities for nine high-level biosafety 
laboratories. These state-of-the-art labs will contain special 
engineering and design features to prevent release into the environment 
of the most deadly microorganisms. The facilities also will be 
available to assist national, state and local public health officials 
when needed. Similar cooperative programs were established by the NIAID 
to encourage biodefense research within the pharmaceutical industry, 
human immunology research institutes, and computational science 
centers. The proposed fiscal year 2005 budget includes continued 
support of these efforts, as well as funding for the final two Centers 
for Excellence and $150 million for an additional 20 high-level 
biosafety laboratories.
             infectious disease research and public health
    Centuries of triumph and defeat mark the human struggle against 
infectious disease. Many infectious diseases persist and continue to 
plague us. Each year populations are beset by one or more previously 
unknown diseases or pathogens. The World Health Organization estimates 
that more than 1,600 die each hour from an infectious disease, half 
under 5 years of age. Others suffer with debilitating infections. For 
instance, an estimated 40 million people worldwide are living with HIV/
AIDS. Tuberculosis, malaria, and other familiar intractable diseases 
kill or sicken millions annually. New outbreaks surprise and alarm 
nations. Being prepared to detect, treat, and prevent any infectious 
disease is the central, science based mission of the NIAID, with well-
funded medical research.
    Newly emerging and re-emerging or resurging infectious diseases 
constantly change the landscape of microbiological research, creating 
moving targets for medical intervention and prevention. West Nile 
virus, monkeypox, dengue, multi-drug resistant tuberculosis and malaria 
are current examples of what faces NIAID-supported investigators. Last 
year's SARS outbreak illustrates the breadth and depth of NIAID 
research and response capabilities. It is a cautionary tale of how a 
previously unknown disease can quickly become a global news story of 
significant economic and public health importance. Within months the 
new respiratory illness had caused more than 8,000 cases and nearly 900 
deaths in 30 countries, severely disrupting international trade and 
travel--and yet it became a triumph for science and public health 
efforts, in large part due to effective, well-funded NIAID research. 
NIAID-supported scientists in Hong Kong were the first to show that 
SARS was caused by a virus; within days, they and CDC investigators 
identified the virus as a previously unknown type of coronavirus. An 
ongoing NIAID-funded program of influenza surveillance then found 
animal carriers of the virus in food markets in China. Related NIAID-
supported work quickly followed, including several genetic analyses of 
the virus underway, an NIAID-developed mouse model of SARS, screening 
of up to 100,000 antiviral compounds for anti-SARS activity, several 
parallel approaches to vaccine development, as well as joint projects 
with private industry, researchers abroad, and China's Center for 
Disease Control. NIAID funding led to quick development of a rapid 
diagnostic test now being improved, and NIAID provides researchers with 
free SARS ``gene chips'' embedded with a reference strain of the virus 
for genetic screening of isolates. NIAID's extensive and multi-layered 
quick response to SARS was possible largely because of previous 
investments in virus and respiratory disease research.
    Each year NIAID responsibilities for novel diseases grow greater, 
not less. Today a new threat of global potential, the so-called bird 
flu or H5N1 influenza, is emerging to join diseases like West Nile 
virus infection and bovine spongiform encephalopathy (BSE) as targets 
of NIAID initiatives. NIH supported laboratories are world leaders in 
research on transmissible spongiform encephalopathies that include BSE, 
Creutzfeldt-Jakob disease in humans, and chronic wasting disease in 
deer and elk. Last year there were more than 9,000 human cases of 
mosquito-borne West Nile virus infection in the United States. Since 
first detected in 1999, WNV has spread throughout North America and 
beyond. NIAID-supported scientists have developed an immunoassay to 
identify WNV and a new treatment already in early clinical trials.
    A myriad of infectious diseases continue to take a toll on people 
worldwide. Infections of the respiratory tract continue to be the 
leading cause of acute illness worldwide. In the United States, 
diarrhea is the second most common infectious illness and diarrheal 
diseases account for 15 to 34 percent of deaths in some countries. 
NIAID funding supports a broad variety of basic and applied research to 
better understand food- and waterborne-illnesses. Sexually transmitted 
infections (STIs) affect over 15 million people in the United States 
each year. NIAID-supported researchers recently discovered an unusual 
bacterium that may be the cause of many reproductive tract infections 
in women. More than 25 STIs have now been identified, and NIAID is 
supporting multiple projects aimed at preventing and treating STIs. 
Currently a new vaccine for genital herpes is in advanced clinical 
trials.
    Together, HIV/AIDS, malaria and tuberculosis account for more than 
5 million deaths each year. One of the principal goals of 21st-century 
medical science is the development of safe and effective vaccines 
against these three global killers. In the United States, more than 
500,000 have died from AIDS-related illness; the CDC estimates that 
850,000 to 950,000 Americans are living with HIV infection. HIV/AIDS 
research continues to be a significant component of NIH research: The 
Administration's fiscal year 2005 budget requests $2.9 billion for HIV/
AIDS research at NIH, a 2.8 percent increase over fiscal year 2004. 
NIAID investigators continue to develop new treatments, and the number 
of AIDS vaccines in development and testing increases steadily.
    Malaria threatens more than one-third of the world's population and 
kills more than 1 million each year. Although United States cases of 
malaria are unusual, the NIAID has become a leader in the accelerated 
development of malaria vaccines. The agency has initiated its first 
trial of a candidate malaria vaccine in Africa. One-third of the 
world's population also fights tuberculosis, another major global focus 
of the NIAID. A new recombinant vaccine made with several proteins from 
the bacterium that cause TB will soon enter human trials. Scientists 
recently discovered genetic mutations in the tuberculosis bacterium 
that contribute to worrisome antibiotic resistance.
    The increasing use of antimicrobials in humans, animals and 
agriculture has contributed to pathogen resistance to antibiotics and 
some diseases are becoming more difficult to treat because of the 
emergence of drug resistance. NIAID supports antimicrobial research and 
the goals of the Interagency Task Force for Antimicrobial Resistance.
    In recognition of impressive NIAID contributions to public health 
and homeland security, the ASM emphasizes that only sustained financial 
investment will guarantee continued success against today's infectious 
diseases, tomorrow's unpredictable pathogens, and the growing threat of 
antimicrobial resistance.
                                 ______
                                 
     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 8 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 2005.
                       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 $28.8 
billion in fiscal year 2005 if Congress fulfills the President's budget 
request. Out of this funding, we seek $2.5 million (0.009 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 several years, our organization 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. Furthermore, 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 2005. 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 Society of Nuclear Medicine
    The Society of Nuclear Medicine (SNM) appreciates the opportunity 
to submit written comments for the record regarding funding for 
workforce education and training and biomedical research related 
programs in fiscal year 2005. SNM is an international scientific and 
professional organization founded in 1954 to promote the science, 
technology and practical application of nuclear medicine. Its 14,000+ 
members are physicians, technologists and scientists specializing in 
the research and practice of nuclear medicine.
    To that end, SNM advocates ongoing and significant federal funding 
for programs to help ensure an adequate nuclear medicine workforce to 
care for the nation's citizens as well as increasing the our investment 
in biomedical research. The Society stands ready to work with 
policymakers at the local, state, and federal levels to advance 
policies and programs that will reduce and prevent suffering from 
disease.
                       what is nuclear medicine?
    Nuclear medicine is a medical specialty that involves the use of 
small amounts of radioactive pharmaceuticals, called ``Radiotracers'' 
or ``Tracers,'' to help diagnose and treat a variety of diseases. These 
tracers are detected by special types of cameras that work with 
computers to provide nuclear medicine physicians and the patient's 
doctor precise pictures of the area of the body being imaged. It is a 
way to gather medical information that may otherwise be unavailable, 
require exploratory surgery, or necessitate more expensive diagnostic 
tests.
    Nuclear medicine procedures, such as PET (positron emission 
tomography) and SPECT (single-photon emission tomography), often 
identify abnormalities very early in the progression of a disease--long 
before some medical problems are apparent with other diagnostic tests. 
This early detection allows a disease to be treated early in its course 
when there may be a more successful prognosis.
    An estimated 16 million nuclear medicine imaging and therapeutic 
procedures are performed each year in the United States. Nuclear 
medicine procedures are among the safest diagnostic imaging tests 
available. The amount of radiation from a nuclear medicine procedure is 
comparable to that received during a diagnostic x-ray.
    Some of the more frequently performed nuclear medicine procedures 
include:
  --Bone scans to examine orthopedic injuries, fractures, tumors or 
        unexplained bone pain.
  --Cardiac scans to identify normal or abnormal blood flow to the 
        heart muscle, measure heart function or determine the existence 
        or extent of damage to the heart muscle after a heart attack.
  --Breast scans which are used in conjunction with mammograms to more 
        accurately detect and locate cancerous tissue in the breasts.
  --Liver and gallbladder scans to evaluate liver and gallbladder 
        function.
  --Cancer imaging to detect tumors and determine the severity 
        (staging) of various types of cancer.
  --Treatment of thyroid diseases and certain types of cancer.
  --Brain imaging to investigate problems within the brain itself or in 
        blood circulation to the brain.
  --Renal imaging in children to examine kidney function.
    securing and maintaining an adequate nuclear medicine workforce
    The field of nuclear medicine is not attracting enough incoming 
students to fill the current demand for nuclear medicine technologists 
(NMTs). Currently, there is approximately an 18 percent vacancy of NMTs 
as determined by the American Hospital Association (AHA). By 2010, the 
Bureau of Labor Statistics (BLS) projects that the United States will 
need an additional 8,000 NMTs to fill the projected demand created by 
the aging workforce and expanding senior population. Over the next 20 
years, the BLS expects that there will be a 140 percent increase in the 
demand for imaging services. The use of diagnostic imaging services has 
been increasing by approximately 4 percent a year, even as the number 
of certified NMTs and registered radiologic technologists has remained 
stable. As a result, imaging technologists often work longer shifts and 
patients can face weeks of delay for routine exams.
    A similar situation to the shortage of NMTs is developing for 
nuclear medicine physicians. According to the American Board of Medical 
Specialties (ABMS), there currently are 4,087 certified nuclear 
medicine physicians in the United States. At the same time, the number 
of physician training programs is also declining, exacerbating the 
future shortage.
    Over the next 20 years, the number of people over the age of 65 
with cancer is expected to double at the exact same time the nation 
will face shortages of medical personnel--including NMTs, physicians, 
nurses, laboratory personnel, and other specialists. New technology and 
an aging population have increased demand for NMTs, but personnel 
capacity is not keeping pace with the need. With an increasing number 
of people needing specialized care--such as nuclear medicine--coupled 
with an inadequate workforce, our nation faces a health care crisis of 
serious proportion with limited access to quality health care, 
particularly in traditionally underserved areas.
    The workforce education and training programs at the Health 
Resources and Services Administration (HRSA) have created a network of 
initiatives across the country that supports the training of many 
disciplines of health providers. These are the only federal programs 
designed to create infrastructures at schools and in communities that 
facilitate customized training designed to bring the latest emerging 
national priorities to the populations at large and meet the health 
care needs of special, underserved populations.
    These important workforce education and training programs are 
designed to increase access to health care in underserved areas by 
improving the quality, geographic distribution, and diversity of the 
health care workforce. To that end, SNM recommends funding of at least 
$550 million to fulfill this mission in the fiscal year 2005.
    Additionally, the number of residency slots for training physicians 
in nuclear medicine is declining. The Society urges Congress to 
establish a nuclear medicine residency-training fund of $2 million per 
year for 5 years. This fund would provide 50 residency training 
positions each year to be used for an additional year of nuclear 
medicine training of radiology residents and additional 2-year nuclear 
medicine residencies. This addition of trained physicians will help 
ease the work force shortage and add to the number of available 
radiation protection experts in the event of a dirty bomb or other 
radiation incident.
                sustain and seize research opportunities
    Our nation has profited immensely from our past federal investment 
in biomedical research at the National Institutes of Health (NIH). SNM 
is proud to join with the rest of the public health community in 
advocating $30.19 billion for the NIH in fiscal year 2005. This 
increase of 8.5 percent over fiscal year 2004 funding will allow NIH to 
sustain and build on its research progress resulting from the recent 
NIH budget doubling effort while avoiding the severe disruption to that 
progress that would result from a minimal increase.
    The first successful nuclear magnetic resonance (NMR) experiments 
were performed in 1946 leading to the first nuclear magnetic resonance 
imaging (MRI) exam was performed on a human being in 1977. Critical 
advances in technology development now allow physicians to image in 
seconds what used to take hours. Research in biomedical imaging and 
bioengineering is progressing rapidly and recent technological advances 
have revolutionized the diagnosis and treatment of disease. Therefore, 
SNM requests $325 million for the National Institute of Biomedical 
Imaging and Bioengineering (NIBIB) to further the Institute's research 
in the development and application of emerging and breakthrough 
biomedical technologies that will facilitate improved disease 
detection, management, and prevention.
    Cancer research is producing extraordinary breakthroughs--leading 
to new therapies that translate into longer survival and improved 
quality of life for cancer patients. We have seen extraordinary 
advances in cancer research resulting from our national investment that 
have produced effective prevention, early detection and treatment 
methods for many cancers. To that end, SNM asks the Committee to 
allocate $6.2 billion for the National Cancer Institute (NCI) in fiscal 
year 2005 as recommended by the NCI Director in the Bypass Budget 
submitted to Congress annually under the requirements of the National 
Cancer Act of 1971. The Bypass Budget represents the best estimation of 
the scientific community regarding the resources needed to continue our 
battle against cancer.
                               conclusion
    The Society of Nuclear Medicine once again stands ready to work 
with policymakers to advance policies that will reduce and prevent 
suffering from disease for all Americans, while ensuring an adequate 
nuclear medicine workforce. Again, we thank you for the opportunity to 
present our views on funding for nuclear medicine workforce and 
research related programs and stand ready to answer any questions you 
may have.
                                 ______
                                 
      Prepared Statement of the National Prostate Cancer Coalition
    Mr. Chairman and members of the Committee, thank you for the 
opportunity to share my remarks. The National Prostate Cancer Coalition 
(NPCC) was founded in 1996 to combat a long overlooked killer of men. I 
came to NPCC in 2001, having just recently been impacted by the disease 
myself. In 2000, my grandfather was diagnosed with prostate cancer. 
Having served his country so valiantly in World War II, he was now 
facing a new battle. Luckily, because of early detection through the 
prostate specific antigen (PSA) test and the digital rectal exam (DRE), 
the disease was caught early and, following a radical prostatectomy, he 
is now cancer free. But there are many men who are not so lucky. That's 
why you must adequately fund prostate cancer research for veterans like 
my grandfather, families like mine, and men all over America.
    Under the leadership of this committee we have seen prostate cancer 
research funding increase by nearly $300 million since in the last 6 
years. While we have come a long way, there is still much work to be 
done. For the first year since the founding of NPCC, prostate cancer 
deaths will increase in 2004. Nearly 30,000 lives will be lost to the 
disease. Occurrences of prostate cancer are increasing as well, to over 
230,000 men this year. While cases continue to grow, more men are 
catching the disease in its early stages, when the disease is most 
treatable, by early detection through screening.
    NPCC would like to offer its gratitude on behalf of the 2 million 
American men with prostate cancer for the support this committee has 
offered in the past. The recent doubling of the National Institutes of 
Health's (NIH) budget has helped prostate cancer research funding to 
expand to record levels, but we must ensure this funding is used 
appropriately. To that end, your committee was instrumental in 
requiring NIH and the National Cancer Institute (NCI) to submit a 
professional judgment budget for fiscal year 2003-fiscal year 2008 to 
outline the agencies' plans for prostate cancer research. You have also 
been influential in requesting a fiscal budget for that document, which 
is expected to be submitted to the Committee by April 2004 (Senate Rpt. 
108-081). While no one disputes the historic importance of doubling, we 
ask you to use your oversight capacity to ensure this funding is 
producing results for prostate cancer. Huge sums of taxpayers' money 
have been allocated to NIH over the years and it is now time to examine 
what this windfall has produced. Therefore, we request that you ask NIH 
to submit a yearly update on its prostate cancer research portfolio 
that reflects its progress according to the fiscal year 2003-fiscal 
year 2008 professional judgment budget.
    We are entering an exciting time in biomedical research. The recent 
Food and Drug Administration's approval of Avastin has opened a new 
door for cancer research. Avastin targets cancerous cells by blocking 
their blood supply, an idea that had been previously dismissed by the 
medical community as ``absurd.'' The drug not only signals a turning 
point in changing cancer into a manageable, chronic disease but also 
demonstrates the value of seeking out novel and innovative research. We 
must encourage this kind of research at NIH, including assessing the 
value of stem cell research which has shown promise in research for 
neurological diseases, diabetes, and cancer.
    Developing a new approach to research is a priority for NPCC. The 
Prostate Cancer Research Funders Conference, first convened in 2001 and 
then revitalized last fall, seeks to formulate a collaborative, public-
private approach to seek out new ways of attacking the problem of 
prostate cancer. Originally co-convened by NPCC and NCI, participants 
now also include the Department of Defense, the Veterans Health 
Administration, the Centers for Disease Control and Prevention, the 
Food and Drug Administration, Canadian and British government agencies, 
private foundations/organizations and representatives from industry. 
Members of the Conference have come together to form a partnership that 
allows them to focus on key objectives and to address commonly 
recognized barriers in research. This could propel research forward 
significantly. As the Conference continues, we ask that the Committee 
make its functionality part of its oversight commitments to prostate 
cancer research. Currently, federal agencies participate voluntarily, 
but they can opt in or out based on the tenure of executive leadership 
and its time-limited decisions. For the conference to be successful 
federal agencies engaged in the prostate cancer research should, in our 
opinion, be required to participate, and we ask for your leadership to 
make that happen.
    Recognizing the importance of cutting edge research initiatives and 
collaborative research efforts, NIH director Elias Zerhouni, M.D. 
recently unveiled the NIH Roadmap. The Roadmap's strategy mirrors that 
of the Funders Conference, specifically by seeking out new approaches 
and ideas and stimulating cross-institutional and cross-center research 
for all NIH driven biomedical research. Believing, we think correctly, 
that the synergies in the Roadmap can achieve outcomes that are greater 
than those any one Institute or Center can achieve, we support its 
efforts to advance key biomedical research initiatives at an 
exponential rate. NPCC applauds the Roadmap and pledges its support to 
take biomedical research in new directions.
    As NIH and NCI look to redefine and increase the efficiencies of 
their research programs, Congress must equip them with the resources 
they need to implement new initiatives. Unprecedented increases in NIH 
and NCI's funding over the last 6 years have created opportunities 
never before available. We must take advantage of these achievements, 
to not do so will not only harm cancer patients everywhere but is, 
quite simply, poor business sense.
    In his fiscal year 2005 budget, President Bush has requested a 2.6 
percent increase ($28.8 billion) in NIH funding over the fiscal year 
2004 level. Over the past 30 years, the agency has averaged an annual 
growth rate of 8 percent. Leading biomedical research groups like the 
Federation of American Societies for Experimental Biology (FASEB) have 
stated if increases are held to 2 percent-3 percent the grant funding 
rate at NIH will drop below 30 percent and approximately 500 fewer 
grants would be funded. To allow NIH and NCI to adequately continue to 
fund promising grants and research first realized during the budget 
doubling, Congress must appropriate at least an 8.5 percent increase 
($30.25 billion) in funding for these agencies in fiscal year 2005. 
That may seem like a large number, but in reality, it is only a small 
fraction of the estimated $189 billion that cancer alone costs this 
nation yearly.
    Increasing NIH's budget by 8.5 percent would also allow NCI to 
dedicate more than $400 million to prostate cancer research in fiscal 
year 2005. Last year, NCI received only a 3.3 percent increase in 
funding over the previous year's level. Yet, with previously committed 
grant awards and outlays to the NIH Roadmap, NCI is ``effectively 
operating with a budget that is $2.7 million less than last year's 
operating budget (NCI Cancer Bulletin 2/3/04).'' The President's fiscal 
year 2005 budget allocates $4.87 billion to NCI, slightly less than the 
fiscal year 2004 increase. This level will mean even tougher choices in 
awarding grants at NCI. We believe that Congress should fully fund the 
NCI Director's Bypass Budget at $6.2 billion, which would rapidly 
accelerate the nations' fight against all cancers.
    As you know, education and early detection through screening are 
the catalyst to beating prostate cancer. Right now, the PSA blood test 
and DRE physical exam are the best measures for detecting prostate 
cancer early. We ask the Committee to allocate at least $20 million to 
the Center for Disease Control and Prevention's (CDC) prostate cancer 
awareness program. We also encourage the Committee to work with CDC to 
address our concern that the agency places insufficient value on these 
screening tools.
    Thank you again for the leadership you have shown in advancing 
biomedical and, more specifically, prostate cancer research. Under your 
leadership, the nation's war on cancer has reached heights never before 
realized. We look forward to continuing to work with you and the 
members of the Committee until a cure is found.
                                 ______
                                 

                        DEPARTMENT OF EDUCATION

   Prepared Statement of the Southern Methodist University School of 
                              Engineering
    Mr. Chairman and Members of the Subcommittee, I am very grateful to 
be able to offer testimony on the importance of maintaining our global 
economic leadership position through a wise and sustained investment in 
engineering education. And, I want to share with you the early success 
of a program called the Texas Engineering and Technical Consortium that 
has emerged as a national model for increasing the technical 
capabilities of our workforce.
    As you know, engineering and technology is an important engine of 
our national economy. The innovations created by our working engineers 
have fueled the information revolution, increased our national 
security, brought more efficient health care, and created a larger food 
supply to the world.
    Our remarkable engineering successes have been the product of our 
talented and highly skilled technical workforce. Unfortunately, recent 
national trends don't bode well for increasing the number of homegrown 
high-tech workers. A 2003 national survey \1\ showed that the level of 
interest in engineering majors by college bound high school seniors has 
declined by 37 percent over the last 12 years. Sadly, this is a 
uniquely American phenomenon; much of the rest of world understands how 
important an engineering and technical workforce will be to their long-
term economic health. Within the decade, some predict that India and 
China together could graduate nearly 1 million engineers per year, a 
number 20 times greater than the production of engineers here in the 
United States.
---------------------------------------------------------------------------
    \1\ ``Maintaining a Strong Engineering Workforce,'' ACT Policy 
Report, authors R. Noeth, T. Cruce, and M. Harmston, 2003.
---------------------------------------------------------------------------
    The recently released Hart-Rudman report for the U.S. Commission on 
the National Security/21st Century says:

    ``The harsh fact is that the United States need for the highest 
quality human capital in science, mathematics, and engineering is not 
being met.'' \2\
---------------------------------------------------------------------------
    \2\ Road Map for National Security: Imperative for Change, The 
Phase III Report of the U.S. Commission on the National Security/21st 
Century, pp. 30, February 15, 2001.
---------------------------------------------------------------------------
Why is This Important to Both Texas and the Nation?
    Engineering and technology have been drivers of the Texas and 
national economy for nearly 100 years. With the discovery of oil at 
Spindletop by Austrian born engineer Francis Lucas to the kick-start of 
the high tech industry by Jack Kilby's invention of the integrated 
circuit in Dallas, Texas engineers have had a profound and historic 
impact for both our state's and nation's economy. And today, Texas is a 
major hub for engineering innovation--employing nearly half a million 
high tech and engineering workers, with annual wages of $36 billion, 
while exporting $29 billion in goods and services.
    Yet today, this important and large industry is being replenished 
by only 4,500 new college graduates in engineering and computer 
scientists each year. This reality will impact all of us. For example, 
over the next decade, the Joint Strike Fighter program based at 
Lockheed Martin in Ft. Worth, expects to hire twice as many engineers 
each year than the entire state produces. This workforce imbalance is 
bad for Texas and bad for our nation. Our only hope for maintaining 
global leadership in engineering innovation is to invest today in the 
education of the best, most diverse, population of engineers in the 
world.
 a call to action: continue investing in successful programs like the 
               texas engineering and technical consortium
    Fortunately, I am happy to report that the Texas Engineering and 
Technical Consortium, which you supported in last year's budget at $3 
million, is beginning to pay real dividends. Texas Senators Kay Bailey 
Hutchison and John Cornyn led the way in supporting our request for 
federal resources to match state and corporate contributions.
    This innovative effort, aimed at doubling the number of engineers 
and computer scientists graduating from our universities, is already 
having a significant impact. In fact, The Infinity Project, one program 
funded by TETC that I direct, is having a profound effect on national 
engineering education at the high school level--a key barrier to 
college success. This award winning engineering curricula has increased 
high school students' interest in engineering by 40-fold in schools 
that offer the program. And there are other great examples as well.
    The wise investments of the state and federal government, along 
with high-technology companies of Advanced Micro Devices (AMD), Applied 
Materials, Hewlett-Packard, Intel, International SEMATECH, Lockheed 
Martin, Motorola, National Instruments, National Semiconductor, Sabre, 
and Texas Instruments is changing how Texas universities identify, 
recruit, educate, and mentor tomorrow's engineers. Through these 
efforts, TETC is establishing a national model for other states to 
follow as they address their own workforce needs.
    But I am here to tell you that our work has really just begun. As a 
nation, we have struggled for decades to attract a diverse set of well-
prepared students to the exciting world of engineering, math, and 
science. Permanent solutions to this problem have been elusive--and 
further still, programs that have shown promise often don't get the 
sustained funding necessary to have a real impact.
    Therefore, on behalf of the 34 Texas universities and industry 
leaders participating in TETC, I ask that you continue investing in the 
Texas Engineering and Technical Consortium.
    The program is sound and successful. I ask you to help make our 
progress sustainable.
                               conclusion
    I want to thank Chairman Arlen Specter, Ranking Member Tom Harkin, 
Members of the Subcommittee and, of course, Senators Hutchison and 
Cornyn once again for supporting TETC. On behalf of all of us across 
this nation who care deeply about the economic health of our country, I 
appreciate your interest in improving the quantity, quality, and 
diversity of America's technical workforce.
                                 ______
                                 
   Prepared Statement of the K-12 Science, Technology, Engineering & 
                    Mathematics Education Coalition
    We encourage you to continue the federal commitment to math and 
science education by maintaining the peer-reviewed Math and Science 
Partnerships (MSPs) at the National Science Foundation (NSF) and 
supporting robust funding for both the U.S. Department of Education 
(ED) and the NSF Math and Science Partnership programs.
    We urge you to oppose the Administration's budget proposal that 
would phase-out the NSF MSP program and establish a new federal grant 
administered by the Secretary of Education that would, in effect, limit 
individual states' discretion to target much-needed funds for local 
science and mathematics education reforms.
    We believe that the MSPs at both the Department of Education and at 
NSF are necessary and complementary. Without one, the other is 
significantly weakened.
    The competitive, peer-reviewed, NSF MSPs seek to develop 
scientifically sound, model, reform initiatives that will improve 
teacher quality, develop challenging curricula, and increase student 
achievement in mathematics and science. The funds appropriated under 
NCLB for the ED MSPs go directly to the states as formula grants, 
providing funds to all states to replicate and implement these 
initiatives throughout the country.
    While we support the Administration's proposal to increase funding 
for the ED MSPs, we oppose the creation of a new $120 million ED grant 
program that runs counter to congressional intent by focusing only on 
math and reducing state flexibility to target funds to areas of 
greatest need. We encourage you to oppose new restrictions on the 
additional funding slotted for the state-based ED MSPs.
    In summary, we strongly urge Congress to:
  --reject the Administration's proposed phase-out of the NSF MSP 
        program;
  --oppose additional restrictions to the ED MSP program; and,
  --provide robust funding for both MSP programs.
    If you have any questions, please contact Patti Curtis at 202-785-
7385.
                                 ______
                                 
              Prepared Statement of Americans for the Arts
                                request
    Americans for the Arts is pleased to submit testimony supporting 
fiscal year 2005 appropriations 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-plus year record of objective arts industry research, we are 
dedicated to representing and serving local communities and creating 
opportunities for every American to participate in and appreciate all 
forms of the arts. Our belief in the importance of practical research 
causes us to take special pleasure in supporting USDE's Arts in 
Education program, which is generating impressive evidence on the best 
ways to improve overall academic achievement by integrating the arts 
into the school curriculum. The evidence of improved academic 
achievement is itself impressive. For example:
  --Mississippi's Whole School Initiative found that schools with a 
        high degree of implementation far surpassed other schools in 
        their ability to meet No Child Left Behind (NCLB) reading 
        targets.
  --In Houston, analysis showed that students in participating 
        elementary schools out-performed their demographic peers on the 
        Iowa Test of Basic Skills, and that the benefits lasted beyond 
        graduation and on into middle school.
    We have provided more detailed information on the Mississippi 
example below.
    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 that level. Since fiscal 
year 2001, however, Congress has appropriated funding sufficient to 
support a broader array of arts education programs. For fiscal year 
2004, Congress appropriated $35.1 million. In addition to the Kennedy 
Center and VSA arts, USDE now supports grants competitions to:
  --further develop established arts education models;
  --support professional development for arts educators in four arts 
        disciplines; and
  --establish 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 
2005, 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.
            four reasons to increase arts education funding
    The most important reason to support arts education is simply 
stated: arts education works for children. Research increasingly 
confirms its beneficial effects in several areas, including but not 
limited to academic achievement. We refer the Subcommittee to a 
research compendium Critical Links: Learning in the Arts and Student 
Academic and Social Development,\1\ released by the Arts Education 
Partnership in 2002, 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. The studies suggest that arts education may be 
especially useful for students who are economically disadvantaged and/
or in need of remedial instruction.
---------------------------------------------------------------------------
    \1\ http://www.aep-arts.org/CLTemphome.html
---------------------------------------------------------------------------
    The second reason to increase funding is that schools desperately 
want it. Even now, when the accountability and testing regimens of NCLB 
have focused schools' attention on what some call ``the basics,'' many 
schools understand that the arts are a core academic subject, as NCLB 
indeed stipulates, that they are essential, and that they work. The 
Department of Education's first model grant competition generated a 
flood of applications 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. Unfortunately, without an increase in 
funding, USDE will be unable to hold a new grant competition for 2 
years.
    The third reason is that while there is tremendous interest in arts 
education, substantial improvements need to be made to delivery 
systems. 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 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.
    Finally, despite increases in overall federal spending for K-12 
education, and despite the substantial flexibility given to states, 
evidence is beginning to accumulate that schools are neglecting those 
areas of the curriculum that are not subject to the mandatory testing 
requirements of NCLB. The National Association of State Boards of 
Education (NASBE) identified the threat in its 2003 report The Lost 
Curriculum; \2\ in response, NASBE's current quarterly policy journal, 
the State Education Standard,\3\ is devoted entirely to ``ensuring a 
place for the arts in America's schools.'' Earlier this month, the 
Council for Basic Education released a survey \4\ of school principals 
in four states: fully one quarter of them report that they have 
decreased instructional time in the arts. Unfortunately--and perhaps 
even tragically--the shift away from the arts appears most concentrated 
in elementary schools and schools with large minority populations. We 
have supported NCLB, especially its inclusion of the arts as a core 
academic subject, and we believe that the problems facing arts 
education are a consequence that is very much unintended. Nevertheless, 
the problems are real and must be addressed. USDE's model development 
program--if there is sufficient funding for national dissemination--
provides principals with desperately needed information on how to 
integrate the arts into the curriculum in a way that improves academic 
achievement.
---------------------------------------------------------------------------
    \2\ http://www.nasbe.org/Research_Projects/Lost_Curriculum.html
    \3\ http://www.nasbe.org/Standard/index.html
    \4\ http://www.c-b-e.org/PDF/cbe_principal_Report.pdf
---------------------------------------------------------------------------
          case example: mississippi's whole schools initiative
    In our testimony for fiscal year 2004 funding, we provided 
extensive information on structure and philosophy of the Whole School 
Initiative in Mississippi. This year, we can provide a preliminary 
analysis for the project's final evaluation report, which is due in 
June.
Recap of the Whole Schools Initiative
    In 2001, the Whole Schools Initiative was 1 of 11 successful 
applicants for a 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 arts education models and relevant research. A pilot program 
began in 1992.
    The Whole Schools Initiative was launched in 1998 with a core 
belief that art is essential to every child's education. It is the 
first comprehensive statewide arts education program in Mississippi. 
Its goals are to improve student academic achievement by infusing arts 
into the basic curriculum, 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. Partnerships include local arts councils, Institutions of 
Higher Learning, the Mississippi Alliance for Arts Education, 
professional artists, local school districts and art museums.
    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 
formalized arts instruction. Nineteen of the initiative's 26 schools 
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 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.
    This $1 million grant has allowed MAC to expand its role with 
universities, encouraging the development of pre-service courses that 
to strengthen arts infused instruction and aid arts majors in becoming 
effective instructional leaders. The grant has also enabled MAC to 
expand and refine its evaluation model. A final component of the USDE 
funding is allowing MAC to develop training materials and procedures 
that can be used to replicate the program in other settings. At the end 
of the 3-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.
Preliminary Results of the Whole Schools Initiative
    The preliminary analysis looks closely at WSI participating 
schools' NCLB performance in literacy, which was reported for the first 
time in the fall of 2003. Literacy was chosen as the analytic focus 
because most of the examined schools were elementary school buildings 
and learning to read was the foremost concern at that level. The first 
part of the analysis examines the performance of the 25 participating 
schools in the spring of 2003 and compares their results to the state 
average and to a matched set of comparison schools. The second examines 
a subset of 18 sites that: (1) completed a teacher survey concerning 
the implementation and impact of the initiative and (2) had grade 
levels that were included in the reporting requirements of NCLB.
    The analysis suggests that two conclusions are warranted. First, 
schools attempting to create an arts-rich environment for their 
students performed as well as--if not slightly better than--both the 
state average for all Mississippi schools and a comparison group of 
schools demographically and geographically similar to themselves. 
Second, schools whose teachers reported higher implementation of WSI 
objectives far surpassed lower implementation schools in enabling their 
students to meet the all-important growth targets of NCLB. The 
implication of the analysis is that rather than stripping the 
curriculum of all but basic direct instruction in literacy and math 
under the spotlight of making adequate yearly progress, schools might 
consider enriching the learning environment with multiple opportunities 
to learn in the arts.
                               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, educators in schools, and local 
education agencies and cultural organizations. Most important, it means 
a better education for our children. We urge the Senate Subcommittee on 
Labor, Health and Human Services, and Education 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 Close Up Foundation
    Mr. Chairman and distinguished members of the Subcommittee, my name 
is Stephen A. Janger, and I am president and founder of the Close Up 
Foundation. I am grateful for the opportunity to submit testimony in 
support of the Close Up Fellowships, previously known as the Allen J. 
Ellender Fellowships, which help low-income students and their 
participating teachers take part in our Close Up Washington civic 
education programs. On behalf of my colleagues at the Foundation and 
hundreds of thousands of young people and educators who have 
participated in Close Up through the years from school systems across 
the country, I want to express my appreciation for this Subcommittee's 
longstanding encouragement and support.
    As you may recall, in my testimony last year, I described the 
impact of world events on Close Up's work--specifically, September 11 
and the more recent hostilities in Iraq. We saw a decline in our 
program enrollments because of fear of travel to Washington, D.C., and 
subsequent travel bans. I am pleased to let you know that program 
enrollments appear to be improving and we are seeing a modest increase 
in participation over last year. I want to let you know also that we 
are doing all we can to broaden efforts to encourage participation in 
our civic education programs, knowing that our mission is more 
important and vital than it has been since our inception in 1971. We 
have reason to believe, based on our conversations with teachers and 
school districts, that next year will see an even more significant 
enrollment expansion because of the continued easing of travel 
anxieties and the relaxation of school travel bans.
    The heart of our mission is the conduct of Close Up's weeklong 
program in Washington, D.C. During this program, students receive 12 to 
14 hours of civic instruction and educational activities each day. Led 
by our trained Program Instructors, young people learn in a ``living 
classroom'' environment through study visits to Capitol Hill, 
embassies, and many of the country's most historic and symbolic sites. 
Policy specialists, journalists, lobbyists, and other insiders help 
show students how government works. Close Up's instructors add to these 
seminars by teaching the basics of government and citizenship through 
highly engaging role-playing, workshops, discussion groups, and 
simulations.
    The centerpiece of the program is typically a face-to-face meeting 
with Members of Congress or your staffs. They are able to engage in a 
dialogue with an elected official or staff member ``close up.'' In 
addition, students often see floor debates and committee hearings. They 
come to understand the process of government, may feel a bit less 
intimidated about how it works, and can begin to see that they have a 
role in the future of our democracy.
    The difficult reality is that it has become more expensive to make 
this unique opportunity available for students from every background 
because the costs from even the most competitive vendors continue to 
increase. To pay for these experiences, our young participants, who 
come from very varied backgrounds and represent a wide range of 
academic performance, often start fundraising during their freshman and 
sophomore years to attend the program in their senior year. They 
generate funds from community contributions, fundraising activities, 
and old fashioned work to support the costs of travel and program 
tuition.
    Not every Close Up participant is fortunate to come from an 
affluent background. Our work with Native Americans, Alaska Natives, 
Hispanics, African Americans, migrant students, the physically 
challenged, and students who are long-term cancer survivors takes us 
each year into populations with need for special help to make possible 
their participation. During my 34 years at Close Up, I have seen tens 
of thousands of these student-participants who have been able to 
participate in our Close Up Washington program only because of the 
Close Up Fellowships. The support of this Subcommittee not only covers 
up to half of a needy student's program, it serves as a meaningful 
``jump start'' for the student who seeks additional support from local 
businesses, parents, schools and community organizations. In this way, 
the Fellowships have a significant multiplier effect at the community 
level.
    The Carnegie Foundation published last year a highly collaborative 
report called ``The Civic Mission of Schools.'' It may be the most 
significant statement in the civic education field in the last decade. 
It makes a strong case for making civic education much more of a 
priority in our elementary and secondary system of education. It also 
singles out practices, such as the experiential methodology of Close 
Up, as having the most effect. It also suggests that schools themselves 
cannot do it all by themselves. Partnerships, collaborations, use of 
external resources all can help schools better achieve their civic 
mission.
    Beyond the funding support we work to generate each year from the 
corporate and philanthropic sectors, we could not be more proud of the 
partnerships we have been able to forge with states, districts, and 
individual schools. These partnerships not only provide a number of 
individual students and teachers with the opportunity to take part in 
Close Up's Washington program, but also to use this experience as a 
means of strengthening the entire curriculum and extracurricular 
activities as well in the area of civic education. This is another 
strong example of the multiplier effect.
    I believe strongly that schools are still the best tool for 
instilling civic virtue and that community service, service learning, 
and participation in the development of public policy are essential 
training tools for good citizenship. With that in mind, I want to take 
this opportunity to briefly describe one of our programs that holds 
tremendous potential for growth.
    Several years ago, we decided that our work with inner city schools 
needed greater focus and intensity. To that end we developed strong 
working relationships and raised significant extra financial support to 
dramatically increase the amount of fellowship resources for the major 
urban public school districts in Washington, D.C., Houston, and Tulsa. 
Within this current year, we have added Atlanta and Miami to this new 
series of program activities we call the Great American Cities Program.
    Students receive a great deal of financial assistance from 
community support, and much is expected of them both before and after 
their Washington program experience. Students develop and implement 
community projects that contain in some form a public policy dimension. 
Teachers receive in-service training, led by our own staff and other 
experts, on how to foster and develop these programs. This is another 
example of the multiplier effect where Close Up Fellowships have 
provided through the years a partnership with school districts that 
enabled the launch of an innovative and effective program.
    As you will read in a few testimonials following this statement--
selected from the thousands we receive each year--Close Up's work with 
young people and educators provides inspiration, reduces cynicism and 
enhances understanding about the democratic process. Students see 
firsthand how individuals make a difference and that they themselves 
can leave things a little better than they found them.
    Close Up was started more than three decades ago in another era of 
conflict to help address the disillusionment expressed by many young 
Americans during the Vietnam War. Our work has remained both relevant 
and effective, and is needed now more than ever. America today is faced 
with many policy choices, both international and domestic, that 
threaten to divide us. A greater dialogue among a thoughtful and 
patriotic citizenry is needed to help pull our country together. This 
has been our goal since our inception: to create a public of engaged, 
informed, and responsible citizens that Jefferson believed was the most 
important outcome of our nation's schools.
    In closing, Mr. Chairman, I want to thank this Subcommittee for its 
strong support through the years. The nation's civic education efforts 
cannot afford to take a back seat to other curricula objectives. These 
efforts should underlie our important focus on literacy and science 
testing. It should be second nature to our young people that the 
blessings of this great country, and the responsibilities to sustain 
those blessings through active involvement in the democratic process, 
are the bedrock values and principles from which the liberties of 
personal and academic freedom are derived. These values and these 
principles are what set us apart as a nation.
    The Close Up Foundation takes great pride in its national 
leadership in these values and principles from which we have never 
deviated since we began in 1971. The vital funding that we have 
received from this Subcommittee through the years, combined with our 
own efforts in the private sector to multiply that funding, has made it 
possible for hundreds of thousands of young people and their teachers 
representing every kind of background to understand and appreciate 
these core values and principles. Your continued support at an 
increased level for the Close Up Fellowships will help us do more--
where it is most needed.
    We respectfully request that this Subcommittee increase the Close 
Up Fellowships to a level of $4 million. This will enable us to 
multiply our efforts even further, so that those who are most often 
neglected or turned away from the civic involvement mainstream are 
brought into the democratic process. This is fundamental to our 
mission.
    Thank you, Mr. Chairman, for your consideration of this request.
                 testimonials of close up participants
    ``I truly believe that your program is the most educational 
governmental program available to students in the United States. With 
the additions of teacher fellowships as well as student fellowships we 
are able to encourage and in fact provide for opportunities to all our 
students regardless of economic status or academic levels.''----Todd 
Lee, Teacher, 2004 Tioga High School, Tioga, North Dakota.

    ``Many members of my staff have had an opportunity to met with a 
number of these students and their participating teachers directly. The 
feedback has been overwhelmingly positive. We are all pleased with the 
excitement for learning expressed about the program. We have also met 
regular with the leaders of the Close Up Foundation and their gifted 
young educators who are charged with conducting the program. To a 
person we are impressed by the integrity, commitment, and the passion 
they bring to their work.''----Dr. David E. Sawyer, Superintendent, 
2003 Tulsa Public Schools, Tulsa, Oklahoma.

    ``Close Up gave me the insider's view of Washington and our 
government. I now have a greater understanding of the political 
process. I learned that I can make a difference, and I now have a 
greater desire to participate in the political system. . . . Close Up 
gave me a passion and interest in the United States government.''----
Katherine McDermott, Student, 2004 Doniphan-Trumbull High School, 
Doniphan, Nebraska.

    ``Close Up is a huge part of my life. I met amazing people from all 
over the country and each one of those people helped me to fully 
establish and solidify my political views. Because of my involvement in 
Close Up I have been able to help educate my peers about how our 
government works as well as work for educating people about voting.''--
--Andrea Nowak, Student 2004 Bishop Foley High School, Madison Heights, 
Michigan.

    ``I always had strong political views, but being surrounded by kids 
who `didn't care' about current events, I never had to prove my ideas 
to anyone. Going on Close Up, I realized that not everyone shared my 
views, in fact, some even said I was wrong! . . . While I didn't back 
down, I at least began to understand the other side's argument, 
something I would never have been able to do before. . . . Close Up 
opened me up to a whole new world of ideas, thought, and way of life. 
And while I may not agree, at least I can agree to disagree.''----Emily 
Wolfe, Student, 2004 Newton South High School, Newton Centre, 
Massachusetts.

    ``The Close Up Program, in particular our time on Capital Hill, 
affords students the opportunity to experience democracy in a hands-on 
fashion, thus making it real to them. In addition, it validates the 
necessity of their role in a democratic society.''----Lori Merkel, 
Teacher, 2003 East Valley High School, Spokane, Washington.

    ``This organization provides a unique experience for both students 
and teachers. I am a history teacher at Senn High School in Chicago. 
Like many Chicago Public Schools, we battle the effects of poverty 
every day in our classrooms. The opportunity the Close Up Foundation 
gives to these students is tremendous. This may be the only time in the 
lives of my students where they will have this type of access to 
Washington, DC and the officials who make decisions affecting their 
lives.''----Johanna Klinsky, Teacher, 2004 Nicholas Senn High School, 
Chicago, Illinois.

    ``. . . You . . . may not hear about the lives that are changed 
through your work each day, but please know that your support and 
leadership make dreams come true for students and create life-changing 
experiences. It may sound cliche, but it is so very true: Only in 
America can children who are born in the most humble of circumstances 
have real opportunities to make all of their dreams come true. Truly, 
the broad scope of American education positively impacts every student 
and extends to each student a special invitation to excellence.''----
Dr. Beverly Boone, Principal, 2003 The Anchor School, Biscoe, North 
Carolina.
                                 ______
                                 
                  Prepared Statement of Zero to Three
    Chairman and Members of the Subcommittee: I am pleased to submit 
the following testimony on the Labor/Health and Human Services/
Education and Related Agencies fiscal year 2005 Appropriations on 
behalf of ZERO TO THREE. My name is Matthew Melmed. For the last 9 
years I have been the Executive Director of ZERO TO THREE. ZERO TO 
THREE is a national non-profit organization that has worked to advance 
the healthy development of America's babies and toddlers for over 25 
years. I would like to start by thanking the Subcommittee for all of 
their work to ensure that our nation's at-risk infants and toddlers 
have access to early intervention and positive early learning 
experiences.
    We know from the science of early childhood development that 
infancy and toddlerhood are times of intense intellectual 
engagement.\1\ During this time--a remarkable 36 months--the brain 
undergoes its most dramatic development, and children acquire the 
ability to think, speak, learn, and reason. All babies and toddlers 
need positive early learning experiences to foster their intellectual, 
social, and emotional development and to lay the foundation for later 
school success. Babies and toddlers living in high-risk environments 
need additional supports to promote their healthy growth and 
development. Disparities in children's cognitive and social abilities 
become evident well before they enter Head Start or Pre-Kindergarten 
programs at age 4. I am here to talk to you today about why it is 
important to increase funding for three programs focused on the unique 
needs of low-income infants and toddlers--Early Head Start, the Child 
Care and Development Fund (CCDF) and Part C of the Individuals with 
Disabilities Education Act (IDEA).
---------------------------------------------------------------------------
    \1\ Shonkoff J., and Phillips, D. (Eds.) (2000). National Research 
Council and Institute of Medicine. From Neurons to Neighborhoods: The 
Science of Early Childhood Development. Washington, DC: National 
Academy Press.
---------------------------------------------------------------------------
                            early head start
What is Early Head Start?
    Congress created Early Head Start in 1995 with strong bipartisan 
support. It is the only federal program specifically designed to 
improve the early education experiences of low-income babies and 
toddlers. The mission of Early Head Start is clear: to support healthy 
prenatal outcomes and enhance intellectual, social and emotional 
development of infants and toddlers to promote later success in school 
and life. Research demonstrates that Early Head Start is effective. The 
Congressionally mandated National Evaluation of Early Head Start--a 
rigorous, large-scale, random-assignment evaluation--concluded that 
Early Head Start is making a positive difference in areas associated 
with children's success in school, family self-sufficiency, and 
parental support of child development. Early Head Start serves over 
63,000 low-income families with infants and toddlers through 708 
community-based programs.\2\ Unfortunately, only 3 percent of all 
eligible children and families are served.\3\
---------------------------------------------------------------------------
    \2\ U.S. Department of Health and Human Services, Administration 
for Children and Families (2002). Early Head Start Information Folder, 
www.headstartinfo.org/infocenter/ehs_tkit3.htm. 2002 EHS Fact Sheet 
www.acf.hhs.gov/programs/hsb/research/factsheets/02/hsfs.htm.
    \3\ 2002 EHS Fact Sheet www.acf.hhs.gov/programs/hsb/research/
factsheets/02/hsfs.htm. CPS Annual Demographic Survey, March Supplement 
2001 Table 23 ``Single Years of Age--Poverty Status of People in 2001'' 
http://ferret.bls.census.gov/macro/032002/pov/new23_004.html.
---------------------------------------------------------------------------
Is Early Head Start Effective?
    Key to Early Head Start's success is its emphasis on the 
implementation of the Head Start Program Performance Standards, which 
ensure the highest quality care for babies and families and its 
comprehensive approach to serving children and families. What is most 
compelling about the Early Head Start data is that they reflect a broad 
set of indicators, all of which show positive impact--patterns of 
impacts varied in meaningful ways for different subgroups of families. 
For example, the National Evaluation found that Early Head Start 
produced statistically significant, positive impacts on standardized 
measures of children's cognitive and language development; \4\ The 
Evaluation also found that Early Head Start parents were more involved 
and provided more support for learning; and that the program helped 
parents move toward self-sufficiency.
---------------------------------------------------------------------------
    \4\ U.S. Department of Health and Human Services, Administration 
for Children and Families (2002). Making a Difference in the Lives of 
Infants and Toddlers and Their Families: The Impacts of Early Head 
Start. Washington, DC.
---------------------------------------------------------------------------
Funding
    Currently, 10 percent of the overall Head Start budget is used to 
serve 63,000 low-income families with infants and toddlers through 
Early Head Start--only 3 percent of all eligible children. An increase 
in the overall Head Start appropriation is needed and will enable more 
eligible infants and toddlers to be served through the 10 percent Early 
Head Start set-aside. Congressional authorizers are currently 
considering an increase in the Early Head Start funding allocation--
potentially doubling the allocation of funds for infants and toddlers 
enrolled in the program. Given the uncertainty of action on that 
legislation, we encourage the Subcommittee to increase the Early Head 
Start portion of the program to 12 percent of the total appropriation 
for Head Start in fiscal year 2005. Additional funds will enable us to 
protect and continue to build on the firm foundation that currently 
exists and to ensure that more eligible babies and families are able to 
benefit from the services of Early Head Start.
               the child care and development fund (ccdf)
What is CCDF?
    The Personal Responsibility and Work Opportunity Reconciliation Act 
of 1996 revamped the structure of federal funding for child care and 
created the Child Care and Development Fund (CCDF). This streamlined 
block grant attempts to maximize states' flexibility in administering 
child care programs and establishes a single set of rules and 
regulations that apply to all components of the fund. CCDF funding is 
divided into three streams of federal funds: federal mandatory funds 
that do not require a state match; federal mandatory funds that do 
require a state match; and federal discretionary funds that do not 
require a state match. States are required to spend a minimum of 4 
percent of CCDF funds on activities designed to improve the quality of 
child care. Today Congress earmarks $100 million of the CCDF funds for 
strategies to increase the supply and improve the quality of child care 
for infants and toddlers.
Is CCDF Effective?
    CCDF provides funds to help improve the quality and supply of child 
care for low-income children and families. For example, the infant-
toddler set-aside of CCDF, currently earmarked through the 
appropriations process, has helped states focus on the unique needs of 
infants and toddlers by investing in specialized infant-toddler 
provider training, providing technical assistance to programs and 
practitioners, and linking compensation with training and demonstrated 
competence. Another example is the quality set-aside of CCDF. The 
quality set-aside, currently 4 percent, provides funds to states in 
order to support and develop innovative strategies for improving the 
quality of child care. Strategies may include: training grants and 
loans to providers; improved monitoring; resource and referral 
counseling for parents to find child care; and other services related 
to improving the quality of child care.
Funding
    Despite modest increases in federal child care funding, CCDF funds 
are insufficient to serve all eligible children. In fact, the Center 
for Law and Social Policy (CLASP) estimates that states served only 
about 14 percent of federally-eligible children (approximately 1 out of 
7) in fiscal year 2000. Connecticut has an estimated 17,000 children on 
its waiting list for child care assistance and has not served any new 
low-income working families not receiving welfare since August 2002. A 
substantial increase is needed to ensure that all states are able to 
serve more eligible children and families. Although states have made 
great progress in improving the quality of child care for low-income 
children, additional resources are necessary to ensure that more low-
income children have access to quality child care. We must 
significantly increase the percentage of the quality set-aside (from 4 
to 10 percent) to improve the quality of child care. Finally, because 
the infant-toddler set-aside is earmarked through the appropriations 
process, we must ensure that the set-aside continues to grow as the 
overall funding for CCDF continues to grow.
                             part c of idea
What is Part C of IDEA?
    Part C of the Individuals with Disabilities Education Act (IDEA) 
authorizes the federal support for early intervention programs for 
babies and toddlers with disabilities, and provides federal assistance 
for states to maintain and implement statewide systems of services for 
eligible children, age birth through 2 years, and their families. Under 
Part C, all participating states and jurisdictions must provide early 
intervention services to any child below age 3 who is experiencing 
developmental delays or has a diagnosed physical or mental condition 
that has a high probability of resulting in a developmental delay. In 
addition, states may choose to provide services for babies and toddlers 
who are ``at-risk'' for serious developmental problems, defined as 
circumstances (including biological or environmental conditions or 
both) that will seriously affect the child's development unless 
interventions are provided. The Part C system offers the opportunity to 
maximize the impact of Part B dollars (which provides for the education 
of children with disabilities ages 3-21). Early intervention services 
under Part C may prevent or minimize the need for more costly services 
under Part B later in a child's life. Research shows that intervention 
is more effective if begun before age 3.
Is Part C Effective?
    The Office of Special Education Programs (OSEP) has commissioned 
the National Early Intervention Longitudinal Study (NEILS) to examine 
what happens to infants and toddlers with special needs and their 
families during and after Part C early intervention. NEILS is following 
a nationally representative sample of 3,338 infants and toddlers who 
received early intervention services. The sample consists of children 
from four age groups--the oldest children in the study exited early 
intervention in 1998, the youngest children in the study exited early 
intervention in 2001. For all age groups, the children were found to be 
advancing developmentally and showing greater mastery of milestones 
than they had when they entered early intervention.\5\ For the children 
who entered early intervention between 6 and 12 months and between 12 
and 18 months of age, a significant percentage had mastered many of the 
motor and self-help milestones by 1 year.\6\ Children in these two age 
groups also showed progress with communication and cognition 
milestones.\7\
---------------------------------------------------------------------------
    \5\ U.S. Department of Education. (2002). Twenty-Fourth Annual 
Report to Congress on the Implementation of the Individuals with 
Disabilities Education Act, Washington, DC: U.S. Department of 
Education.
    \6\ Ibid.
    \7\ Ibid.
---------------------------------------------------------------------------
Funding
    In spite of reports from states that referrals to Part C continue 
to increase, Part C has received only very small increases over the 
past few years. The fiscal year 2003 Part C appropriation was 
$434,159,000 while the current fiscal year 2004 appropriation for Part 
C is $444,363,000.\8\ Although estimates of children with disabilities 
under age 3 range from 3 percent to 5.2 percent,\9\ as of December 1, 
2002, only 2.24 percent of all infants and toddlers (267,923) were 
served under Part C. Because the federal government is not paying its 
fair share to support the provisions of IDEA, the burden is placed on 
states and on families. And there is wide variation in the percentage 
of infants and toddlers enrolled in Part C across states. For example, 
Massachusetts serves 5.8 percent of infants and toddlers while Nevada 
serves less than 1 percent.\10\ Substantial increases in the Part C 
appropriation are needed to ensure that all eligible infants and 
toddlers are served without having the burden placed on states and 
families.
---------------------------------------------------------------------------
    \8\ Council for Exceptional Children, ``Full Funding for IDEA: It's 
a Guarantee, Not Just a Promise.'' February, 2004. Arlington, VA: 
Council for Exceptional Children.
    \9\ Oser, C., & Cohen, J. (2003). America's babies: The ZERO TO 
THREE Policy Center data book. Washington, DC. ZERO TO THREE Press.
    \10\ IDEAdata.com (2004). ``Number and Percentage (Based on 2002 
population estimates) of Infants and Toddlers Receiving Early 
Intervention Services.'' Retrieved April 22, 2004, from 
www.IDEAdata.org
---------------------------------------------------------------------------
                               conclusion
    During the first 3 years of life, children rapidly develop 
foundational capabilities--cognitive, social and emotional--on which 
subsequent development builds. These years are even more important for 
at-risk infants and toddlers. Early Head Start, the Child Care and 
Development Fund, and Part C of IDEA can serve as protective buffers 
against the multiple adverse influences that may hinder their 
development in all domains.
    With the Subcommittee's help, we have made some gains over the past 
few years in increasing funding for early intervention and positive 
early learning experiences for at-risk infants and toddlers. The fact 
remains, however, that our overall policy and funding emphasis is still 
to wait until children are already behind developmentally before 
significant investments are made to address their needs. I urge the 
Subcommittee to change this pattern and invest in infants and toddlers 
early on, when that investment can have the biggest payoff--preventing 
problems or delays that become more costly to address as the children 
grow older. We do not need to accept that vulnerable children will 
inevitably have already fallen behind at age four and then provide 
special education and intensive prekindergarten services to help them 
play catch up. We know how to provide early intervention and positive 
early learning experiences to infants and toddlers that works. I hope 
the Subcommittee will make that initial investment to prevent very 
young children from falling behind.
    Thank you for your time and for your commitment to our nation's 
infants, toddlers and families.
                                 ______
                                 
       Prepared Statement of the United Tribes Technical College
                           summary of request
    For 35 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 2005 funding for tribally controlled postsecondary 
vocational institutions as authorized under Section 117 of the Carl 
Perkins Vocational and Applied Technology Act is:
  --$8 million under Section 117 of the Perkins Act, which is $800,000 
        over the fiscal year 2004 enacted level. This funding is 
        essential to our survival, as we receive no state-appropriated 
        vocational education monies.
  --Ensure that the provision that has been included since fiscal year 
        2002 in the 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.--Beginning in fiscal year 2002 the 
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 
2005 Act.
    In 2001, the Department of Education, for the first time, directed 
Indian grantees (both Section 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 Department of 
Education regulation (promulgated years before the 1998 Perkins 
Amendments) automatically applies the restricted indirect cost rate 
requirement to any Department of Education 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 Department 
of Education 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.
    UTTC Excels.--We bring to your attention the following facts about 
UTTC, an institution with:
  --An 89 percent retention rate
  --A placement rate of 90 percent (job placement and going on to 4-
        year intuitions)
  --A projected return on federal investment of 11 to 1 (2003 study 
        comparing the projected earnings generated over a 29-year 
        period of UTTC Associate of Applied Science graduates with the 
        cost of educating them.)
  --The highest level of accreditation. The North Central Association 
        of Colleges and Schools has accredited UTTC again in 2001 for 
        the longest period of time allowable--10 years or until 2011--
        and with no stipulations. We are also the only tribal college 
        accredited to offer on-line associate degrees.
    The demand for our services is growing and we are serving more 
students.--For the Spring Semester 2004, we enrolled 661 students from 
more than 45 tribes and 17 states. The majority of our students are 
from the Great Plains states, an area that, according to the 2001 BIA 
Labor Force Report, has an Indian reservation jobless rate of 75 
percent. UTTC is proud that we have an annual placement rate of 90 
percent. We hope to enroll 2000 adult students by 2008.
    In addition, as of the Spring Semester 2004, we serve 185 children 
in our Theodore Jamerson Elementary school, and 133 children in our 
infant-toddler and pre-school programs, bringing the population for 
whom we provide direct services to 979.
    UTTC course offerings and partnerships with other educational 
institutions.--UTTC offers 14 vocational/technical programs and awards 
a total of 24 2-year degree and 1-year certificates. We are accredited 
by the North Central Association of Colleges and Schools.
    We are very excited about the recent additions to our course 
offerings, and the particular relevance they hold for Indian 
communities. These programs are: (1) Injury Prevention, (2) On-Line 
Education, (3) Nutrition and Food Services, (4) Tribal Government 
Management, and (5) 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 U.S. population We received assistance 
        through Indian Health Service 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 
        Book).
  --On-Line Education.--We are working to bridge 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 and as well as to students on 
        our campus. We currently have 47 students (15.5 FTE) taking on-
        line courses. We are accredited by the North Central 
        Association of Colleges and Schools to provide on-line 
        associate degrees. We were invited by North Central to share 
        our experiences in gaining on-line accreditation at their 
        March, 2004 meeting in Chicago and did make that presentation. 
        We have also been invited by New Mexico State University to do 
        the same.
    At this point, nearly half of the students taking on-line courses 
are campus-based students. On-line courses provide the scheduling 
flexibility students need, especially those students with young 
children. Our on-line education is currently provided in the areas of 
Early Childhood Education and Injury Prevention We will be asking 
approval this year from the North Central Association to offer full 
degree on-line programs in the following areas: Health Information 
Technology, Nutrition and Food Science, Elementary Education, and also 
possibly Criminal Justice. This approval is required in order for us to 
offer federal financial aid to the students enrolled in these on-line 
courses.
  --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, we will need more classrooms, equipment and 
        instructors. Our program includes all of the Microsoft Systems 
        certifications that translate into higher income earning 
        potential for graduates.
  --Nutrition and Food Services.--UTTC will meet the challenge of 
        fighting diabetes in Indian Country through education. As this 
        Subcommittee knows, 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 Services Associate of Applied Science 
degree in an effort to increase the number of Indians with expertise in 
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 Services degree 
with a strong emphasis on diabetes education and traditional food 
preparation.
    We also established the United Tribes Diabetes Education Center to 
assist local tribal communities and our students and staff in 
decreasing the prevalence of diabetes by providing diabetes educational 
programs, materials and training. We 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 and are partnering with three other tribal colleges (Sitting 
Bull, Fort Berthold, and Turtle Mountain) in this offering. The 
development of the tribal tourism program was well timed to coincide 
with the planned activities of the national Lewis and Clark 
Bicentennial last 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 Services 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, South Dakota and 
        North Dakota. We also administer a Workforce Investment Act 
        program and an internship program with private employers.
    Economic Development Administration funding was made available to 
open a ``University Center.'' The Center is used to help create 
economic development opportunities in tribal communities. While most 
states have such centers, this center is the first-ever tribal center.
    Department of Education Study Documents our Facility/Housing 
Needs.--The 1998 Vocational Education and Applied Technology Act 
required the Department of Education to study the facilities, housing 
and training needs of our institution. That report 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 $17 million for the renovation of existing housing and 
instructional buildings and $30 million for the construction of housing 
and instructional facilities.
    We continue to identify housing as our greatest need. We have a 
waiting list of students some who wait from 1 to 3 years for 
admittance. For the first time in its history, in the 2002-2003 year, 
we were forced to find housing off campus for our students. Enrollment 
for the 2002-2003 year increased by 31 percent; and in 2003-2004 our 
enrollment increased another 20 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. The demand for additional housing 
also presents challenges for transportation, cafeteria, maintenance, 
and other services.
    UTTC has now completed a new 86-bed single-student dormitory on 
campus. This dormitory is already completely full as are all of our 
other dormitories and student housing. To build the dormitory, we 
formed an alliance with the U.S. Department of Education, the U.S. 
Department of Agriculture, the American Indian College Fund, the 
Shakopee-Mdewakanton Sioux Tribe and other sources for funding. Our new 
dormitory has at the same time created new challenges such as shortages 
in classroom, office and other support facility space. However, more 
housing must be built to accommodate those on the waiting list and to 
meet expected increased enrollment.
    Some of our housing must be renovated to meet local, state, and 
federal safety codes. In addition some homes may be condemned which 
will mean lower enrollments and fewer opportunities for those seeking a 
quality education.
    Thank you for your consideration of our request. We cannot survive 
without the basic vocational education funds that come through the 
Department of Education's Perkins funds. They are essential to the 
operation of our campus and essential to the welfare of Indian people 
throughout the Great Plains region and beyond.
                                 ______
                                 
 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 compose the 
American Indian Higher Education Consortium (AIHEC), thank you for the 
opportunity to share our fiscal year 2005 funding requests for programs 
within the U.S. Department of Education, and the U.S. 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. Rapid 
growth 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, which were begun specifically to serve the higher education 
needs of American Indian. Annually, these institutions serve 
approximately 30,000 full-and part-time students from over 250 
federally recognized tribes.
    The vast majority of TCUs is accredited by independent, regional 
accreditation agencies and like all institutions of higher education, 
must undergo stringent performance reviews on a periodic basis to 
retain their accreditation status. 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 its 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 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 
longstanding 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 and promoting achievement among students who may 
otherwise never have known postsecondary education success.
    Despite their remarkable accomplishments, tribal colleges remain 
the most poorly funded institutions of higher education in the country. 
Persistently inadequate funding remains the most significant barrier to 
their success. Funding for basic institutional operations of 26 
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. Over 20 years 
later, the funding level has reached just 70 percent of the authorized 
level of $6,000 per full-time Indian student. In fiscal year 2004, 
these colleges are receiving $4,230 per full-time equivalent Indian 
student toward their institutions operating budgets. While mainstream 
institutions have had a foundation of stable state tax-based support, 
TCUs must rely on year-to-year federal appropriations 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.
    Inadequate funding has left many of our colleges with no choice but 
to operate under severely distressed conditions. Although facilities 
initiatives of the last few years have resulted in widespread 
construction at TCUs, many colleges began in surplus trailers; cast-off 
buildings; and facilities with crumbling foundations, faulty wiring, 
and leaking roofs and have a long way to go. 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). Titles III and V 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. TCUs are victims of their own success. This year 
two new tribal colleges are eligible to compete for funding under Title 
III. Despite the increase in the size of the pool of eligible 
institutions, the President's fiscal year 2005 Budget recommends an 
increase of $500,000 to this vital program. We urge the Subcommittee 
fund section 316 at $26 million, an increase of $2.7 million over 
fiscal year 2004 and $2.2 over the President's request, and we ask that 
report language included in since fiscal year 2003 be restated 
clarifying 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 the majority 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 to 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 reiterate 
language included since fiscal year 2002 stating that Section 117 
Perkins grantees need not utilize restricted indirect cost rate.
    The President's fiscal year 2005 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 to 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 ongoing success of this partnership program is the erratic 
availability of discretionary funding made available for the TCU/Head 
Start partnership. In fiscal year 1999, the first year of the program, 
six TCUs received 3-year awards; in fiscal year 2000, seven additional 
colleges received 3-year grant awards; in fiscal year 2001, duration of 
grants was extended from 3-years to 5-years but only three additional 
TCUs received grants; in fiscal year 2002 no new grants were awarded; 
and in fiscal year 2003, eight new grants were awarded. The President's 
fiscal year 2005 budget includes a request of $6.9 billion 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 ensure that this critical program 
can be continued and be expanded so that all TCUs might participate in 
the TCU/Head Start Partnership program.
                               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 2005 appropriations request.
                                 ______
                                 
             Prepared Statement of Florida State University
    Mr. Chairman, I would like to thank you and the Members of the 
Subcommittee for this opportunity to present testimony before this 
Committee. I would like to take a moment to briefly acquaint you with 
Florida State University.
    Located in Tallahassee, Florida's capitol, FSU is a comprehensive 
Research I university with a rapidly growing research base. The 
University serves as a center for advanced graduate and professional 
studies, exemplary research, and top quality undergraduate programs. 
Faculty members at FSU maintain a strong commitment to quality in 
teaching, to performance of research and creative activities and have a 
strong commitment to public service. Among the current or former 
faculty are numerous recipients of national and international honors 
including Nobel laureates, Pulitzer Prize winners, and several members 
of the National Academy of Sciences. Our scientists and engineers do 
excellent research, have strong interdisciplinary interests, and often 
work closely with industrial partners in the commercialization of the 
results of their research. Florida State University had over $162 
million this past year in research awards.
    FSU recently initiated a new medical school, the first in the 
United States in over two decades. Our emphasis is on training students 
to become primary care physicians, with a particular focus on geriatric 
medicine--consistent with the demographics of our state.
    Florida State University attracts students from every county in 
Florida, every state in the nation, and more than 100 foreign 
countries. The University is committed to high admission standards that 
ensure quality in its student body, which currently includes some 345 
National Merit and National Achievement Scholars, as well as students 
with superior creative talent. We consistently rank in the top 25 among 
U.S. colleges and universities in attracting National Merit Scholars to 
our campus.
    At Florida State University, we are very proud of our successes as 
well as our emerging reputation as one of the nation's top public 
research universities.
    Mr. Chairman, let me tell you about a project we are pursuing this 
year through the U.S. Department of Education.
    Florida State University (FSU), with support from the State of 
Florida and Governor Jeb Bush, initiated a state-wide partnership among 
the state's universities, local schools, teachers, principals, and 
other educational leaders to address the highest priority issues in K-
12 education. The partnership, entitled the Multi-University Reading, 
Mathematics and Science Initiative (MURMSI), is designed to measurably 
improve teaching and learning in Reading, Mathematics and Science in 
Florida's K-20 schools with a special emphasis on students considered 
``at risk'' due to economic or other conditions. It seeks to develop a 
deeper understanding of ways to improve Reading, Mathematics, and 
Science education through a strategically planned research agenda and 
action plans for change.
    Randomized experiments that are highly valued in other fields, such 
as health, medicine, economics, psychology, political science--and more 
recently Pre-K education--are rare in K-12 education. As a result, 
existing research provides little knowledge about the cause and the 
effect of interventions and programs. The Education Sciences Reform Act 
of 2002 (H.R. 3801) passed by Congress includes language aimed to 
strengthen research design and methodology in education, including use 
of random assignment, when feasible, particularly in cases where 
researchers expect to make claims about causal relationships.
    The connection between research and practice is also a weak link in 
K-12 education. A number of recent publications have substantiated a 
lack of connection between the results of systematic study and 
application in the field. Given the current budget outlook for Florida 
and the nation as a whole, it is critical that the dollars spent on 
education produce improved learning outcomes for students.
    Well-designed research and development on priority educational 
issues can produce measurable gains in student performance. Critical 
knowledge related to improved learning must be produced and, in turn, 
applied throughout the state. To be effective, these R&D efforts must 
directly connect research, teacher preparation, professional 
development, practice and evaluation. To avoid duplication of effort, 
they must also be carefully coordinated across various stakeholder 
groups, including other universities, policy makers, K-12 leaders and 
teachers. By coordinating priorities, each entity can focus on its 
areas of expertise to accomplish the research, development, evaluation 
and dissemination functions essential to support Florida's K-20 system.
    The work of this R&D collaboration--over a period of 5 years--
involves the following:
  --Assist Florida leaders and decision makers in developing a 
        strategically planned research agenda targeting high priority 
        statewide problems in K-20 Reading, Mathematics and Science 
        education.
  --Initiate, conduct and complete priority research projects (within 
        each university) clearly responsive to critical statewide and 
        national education needs using a data based, systems oriented 
        model.
  --Provide decision-makers timely technical advisories and summaries 
        of findings on issues related to education policy and practice.
  --Evaluate the impact of state K-20 initiatives designed to improve 
        K-12 student performance in Reading, Mathematics and Science 
        and disseminate the results.
  --Design and recommend specific applications of the research findings 
        and support implementation programs in school districts.
  --Provide teacher professional development, especially in Reading, 
        Mathematics and Science content areas, as teachers need to 
        broaden and deepen their knowledge in response to changing 
        educational and/or technological needs.
    The first year of this initiative (fiscal year 2003) has been 
funded through a $1.5 million grant awarded to the FSU Learning Systems 
Institute by the U.S. Department of Education. Those resources were 
used to develop the research agenda described above and to initiate 
pilot research projects at universities across the state. During 2004, 
those pilot projects will continue and others will be added. In 2005, 
MURMSI will focus primarily on full implementation of the high priority 
research agenda in K-12 Reading, Mathematics and Science education. All 
aspects of this work will be done through the collaborative partnership 
and consensus-building process with other universities and 
stakeholders. Results of the research projects will be systematically 
shared with policy makers and educators throughout the state.
    We are seeking $3 million in fiscal year 2005 to continue the work 
on this important state-wide project.
    Mr. Chairman, this is just one of the many exciting activities 
going on at Florida State University that will make important 
contributions to solving some key concerns our nation faces today. Your 
support would be appreciated, and, again, thank you for an opportunity 
to present these views for your consideration.
                                 ______
                                 
         Prepared Statement of the NCB Development Corporation
    On behalf of NCB Development Corporation, I am pleased to once 
again submit written testimony to the U.S. 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 the District of Columbia and I would like to 
thank Chairman Specter and Ranking Member Harkin for the opportunity to 
submit this written testimony today on fiscal year 2005 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 the NCB Development Corporation and our approach to 
address the charter school facility finance problem. Then I would like 
to share our thoughts on why charter schools should be looked at in a 
community development strategy.
    NCB Development Corporation (NCBDC), an affiliate of National 
Cooperative Bank pursuant to the National Consumer Cooperative Bank Act 
(Public Law 95-351) is a national nonprofit 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.
    As you may already know, according to the Center for Education 
Reform, there are currently nearly 3,000 charter schools in 42 states 
and the District of Columbia giving nearly 750,000 students 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 a charter school's 
demand for capital. To date, between our lending and technical 
assistance programs, NCBDC has assisted 210 charter schools in 19 
states obtain the facilities they require to accomplish their missions 
impacting 38,106 students, provided more than $66 million in facilities 
financing sustaining no monetary defaults and 0 percent loss rates on 
charter school lending, and helped leverage more than $100 million in 
additional funds. Major partners in these initiatives have included the 
U.S. Department of Education, Charter Friends National Network, the 
Florida Consortium of Charter Schools and the Midwest Charter 
Facilities Coalition.
    As a 2001 recipient of a U.S. Department of Education National 
Activities Grant in and in partnership with the Charter Friends 
National Network established the Technical Assistance Project for 
Charter School Facilities to help charter schools develop and finance 
suitable buildings by providing on-the-ground technical assistance and 
workshops in facility development and financing. In the initial round 
of the highly competitive U.S. Department of Education's Charter School 
Facilities Financing Demonstration Grant Program, NCBDC partnered with 
The Reinvestment Fund, a leading community development financial 
institution based in Philadelphia, and Foundations, Inc., a leading 
technical assistance provider. In 2002, we were successful in receiving 
a $6.4 million grant to create the Charter School Capital Access 
Program (CCAP). CCAP successfully met the goal of raising $45 million 
from investors including PNC Bank of Pennsylvania to create a capital 
pool to help charter schools in the Mid-Atlantic States of New York, 
New Jersey, Pennsylvania, Delaware, and Virginia, and in the District 
of Columbia acquire, renovate, or construct facilities. This is a 
leverage ratio of nearly seven private dollars for every one public 
dollar.
    In 2003, the U.S. Department of Education again recognized NCBDC's 
innovative work in charter school facility finance and awarded NCBDC a 
$6 million grant under the Credit Enhancement Program for Charter 
School Facilities, which is a valuable tool for motivating the private 
sector to get involved in charter school capital development. This 
grant will enable NCBDC to enhance facilities loans and educational 
opportunities for children in Florida, Georgia, Minnesota, and 
Wisconsin. NCBDC was one of four and the only repeat grantee having 
been awarded $6.4 million through the Department's initial Charter 
Schools Facilities Financing Demonstration Program as previously 
referenced.
    Because we have seen firsthand the dire need for charter school 
facility finance, NCBDC supports the continuation and expansion of the 
Credit Enhancement for Charter School Facilities Program by increasing 
appropriations levels as authorized by the United States Congress in No 
Child Left Behind (NCLB or Public Law 107-110) signed into law on 
January 8, 2002.
    According to a U.S. General Accounting Office (GAO) report 
commissioned by Congressional Requesters (GAO-03-899, September 2003) 
states: ``The three greatest challenges facing new charter schools were 
securing a facility, obtaining start-up funding and acquiring the 
expertise necessary to run a charter school.'' The 2000 National Study 
of Charter Schools funded by the Office of Educational Research and 
Improvement within the U.S. Department of Education identified two of 
the same obstacles as lack of management expertise and inadequate 
facilities financing, which 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 a 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, due to 
the inability to find adequate facilities. 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 school facility finance including the more 
than $37 million proved in the omnibus appropriations bill signed into 
law on January 23, 2004 (Public Law 108-199) for the continuation of 
the Credit Enhancement for Charter School Facilities Program and the 
President's $100 million request in his fiscal year 2005 budget 
released in February 2004. The Program will continue 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. While the demand for charter school 
facility finance is estimated nationally at more than $2 billion, $37 
million falls far short of the $200 million in grants authorized yearly 
until 2007 in the NCLB, as outlined in the bipartisan Carper-Gregg 
Amendment in the act.
    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 build neighborhoods.
    During this time of rising budget deficits and the rise in the cost 
of the war on terrorism, 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 this nation's most 
vulnerable children, families, and communities. In summary, NCBDC 
requests a NCLB authorized fiscal year 2005 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 2005 budget request and $163 million over the fiscal year 2004 
appropriated level. In addition, NCBDC supports the continued expansion 
of the Public Charter Schools Program by supporting the President's 
fiscal year 2005 request of $219 million to provide grants to states to 
support 1,200 new and existing charter schools including $19 million 
for the new Charter Schools Per-Pupil Facilities Aid program.
    Thank you again for allowing NCBDC to present its concerns 
regarding fiscal year 2005 appropriations provision of charter school 
facilities financing in written testimony before the Subcommittee.
                                 ______
                                 

                            RELATED AGENCIES

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 nearly 250 community 
radio stations and related organizations across the country. Nearly 
half our members are rural stations and half are minority controlled 
stations. In addition, our members include many of the new Low Power FM 
stations that are putting new local voice on the airwaves. NFCB is the 
sole national organization representing this group of stations which 
provide service in the smallest communities of this country as well as 
the largest metropolitan areas.
    In summary, the points we wish to make to this Subcommittee are 
that NFCB:
  --Requests $410 million CPB for fiscal year 2007, a $10 million 
        increase over the fiscal year 2006 advance appropriation;
  --Requests $60 million in fiscal year 2005 for conversion of public 
        radio and television to digital broadcasting. Also supports 
        funding for the Public TV interconnection system;
  --Requests that advance funding for CPB is maintained to preserve 
        journalistic integrity and facilitate planning and local fund 
        raising 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 that these technologies are available to all public 
        radio services and not just the ones with the greatest 
        resources.
    Community radio fully supports $410 million for the Corporation for 
Public Broadcasting in fiscal year 2007.--Federal support distributed 
through the CPB is an essential resource for rural stations and for 
those stations serving minority communities. These stations provide 
critical, life-saving information to their listeners. Yet they are 
often in communities with very small populations and limited economic 
bases so that the community is unable to financially support the 
station without federal funds.
    In larger towns and cities, sustaining grants from CPB enable 
community radio stations to provide a reliable source of noncommercial 
programming about the communities themselves. Local programming is an 
increasingly rare commodity in a nation that is dominated by national 
program services and concentrated ownership of the media.
    For the past 28 years, CPB appropriations have been enacted 2 years 
in advance. This insulation has allowed pubic broadcasting to grow into 
a respected, independent, national resource that leverages its federal 
support with significant local funds. Knowing what funding will be 
available in advance has allowed local stations to plan for programming 
and community service and to explore additional non-governmental 
support to augment the federal funds. Most importantly, the insulation 
that 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, satellite radio and digital 
broadcasting. We commend these activities which we feel provide better 
service to the American people, but want to be sure that the 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 that 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 the programming services to Latino stations and to Native 
American stations. Satelite Radio Bilingue provides 24 hours of 
programming to stations across the United States and Puerto Rico 
addressing issues of particular interest to the Latino population in 
Spanish. At the same time, American Indian Radio on Satellite (AIROS) 
is distributing programming for the Native American stations, arguably 
the fastest growing group of stations. There are now over 30 stations 
controlled by and serving Native Americans, primarily on Indian 
reservations.
    This last year CPB undertook a comprehensive assessment of the 
Native American Radio system. It recognized the importance of these 
stations in serving local isolated communities (all but one are on 
Indian Reservations) and in preserving cultures that are in danger of 
being lost. The report recognized that ``. . . very difficult 
environments.'' CPB funding is critical to these rural, minority 
stations. CPB's funding of the Intertribal Native Radio Summit in 2001 
helped to pull these isolated stations together into a system of 
stations that can support each other. The report goes on to say 
``Nevertheless, the Native Radio system is relatively new, fragile and 
still needs help building its capacity at this time in its 
development.''
    CPB also funded a Summit for Latino Public Radio which took place 
this in September 2002 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 improve efficiency among the stations through collaborations, and 
explore new ways of reaching the target audiences.
    CPB plays a very important role for the public and community radio 
system. They are the convener of discussions on critical issues facing 
us as a system. They support research so that we have a better 
understanding of how we are serving listeners. And they provide funding 
to 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 publish 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 $50 million in fiscal year 2005 
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 2005 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 major cuts 
from state and institutional funds. And it would come at a time when 
the local voices of community and public radio are especially important 
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 mandated by 
the FCC, public radio is converting to digital to provide more public 
service and to keep up with what commercial radio is doing. The Federal 
Communications Commission has approved a standard for digital radio 
transmission. The initial conversion of radio stations is being 
concentrated in 13 seed markets. CPB has provided funding for 42 
stations in these markets to convert to digital, is supporting 
additional research on AM radio conversion, and is working with radio 
transmitter and receiver manufacturers to build in the capacity to 
provide a second channel of programming. Most exciting to public radio 
is the encouraging results of tests that National Public Radio has 
conducted that indicate that stations can broadcast two high quality 
signals, even while they continue to provide the analog signal. The 
development of 2nd audio channels will potentially double the public 
service that public radio can provide, particularly in service to 
unserved and underserved communities. This initial funding will only 
help a small number of the stations that will ultimately need to 
convert to digital or be left behind.
    Community Radio also supports funding for the public television 
interconnection system.
    Federal funds distributed by the CPB should be available to all 
public radio stations eligible for Federal equipment support through 
the Public Telecommunications Facilities Program (PTFP) of the National 
Telecommunications and Information Agency of the Department of 
Commerce. In previous years, Federal support for public radio has been 
distributed through the PTFP grant program. The PTFP criteria for 
funding are exacting, but allow for wider participation among public 
stations. Stations eligible for PTFP funding and not for CPB funding 
include small-budget, rural and minority controlled stations and the 
new Low Power FM service.
    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 the business 
we are in; the concentration of ownership in commercial radio makes 
public radio in general and community radio in particular, more 
important as a local voice than we have ever been. New Low Power FM 
stations are providing new local voices in their communities. Community 
radio is providing essential local emergency information, programming 
about the local impact of the major global events taking place, 
culturally appropriate information and entertainment in the language of 
the native culture, as well as helping to preserve 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 
the smaller stations to participate along with the larger stations 
which have more resources, as we move into a new era of communications.
    Thank you for your consideration of our testimony.
                                 ______
                                 
       Prepared Statement of the American Association of Museums
    Chairman Specter, Senator Harkin and distinguished members of the 
Subcommittee, the American Association of Museums (AAM) appreciates the 
opportunity to testify on the fiscal year 2005 budget for the museum 
program at the Institute of Museum and Library Services (IMLS). The 
museum program at IMLS is the primary federal entity devoted to 
assisting museums in fulfilling their role as centers for lifelong 
learning for all Americans. We respectfully request your approval of 
the Administration's budget request of $41.4 million for the Office of 
Museum Services, which reflects a strong endorsement of the vital 
public service role museums play in their communities.
    The American Association of Museums, headquartered in Washington 
D.C., is the national service organization that represents and 
addresses the needs of museums and to enhance their ability to serve 
the public. AAM disseminates information on current standards and best 
practices and provides professional development for museum 
professionals to ensure that museums have the capacity to contribute to 
life-long education in its broadest sense and to protect and preserve 
our shared cultural heritage. Since its founding in 1906, AAM has grown 
to more than 16,000 members across the United States--nearly 10,500 
individual museum professionals and volunteers, more than 3,000 
museums, and 2,500 corporate members.
    In its reauthorization of IMLS last year, Congress reaffirmed its 
commitment to the public to ensure that museums will continue to be 
centers of lifelong learning and to protect and preserve our nation's 
heritage. By appropriating federal dollars for these purposes, you 
ensure that society will have museums that are relevant, inspiring and 
accessible.
    Through its grant awards, IMLS has supported museums that are 
responding to the needs of their communities. We are especially excited 
about the new Museums for America program, which provides a critical 
source of funding that supports museums and their roles in public 
service, education and stewardship. With a focus on strategic planning 
and institutional mission, it addresses the specific needs of the 
museum and its community while helping accomplish IMLS's broader 
national goal of creating and sustaining a nation of learners.
    We have already seen the results of IMLS investments in our field. 
Through the 2003 Learning Opportunities Grants, more than $15 million 
was awarded to 169 museums. This included a grant to the State Museum 
of Pennsylvania to create a distance learning program that provides 
professional development to science teachers in Central Pennsylvania. 
As school districts meet the challenges put forward in the No Child 
Left Behind Act, museums are stepping forward with their vast 
collections, research, and staff expertise to strengthen teachers' 
current knowledge and classroom instruction in the method of scientific 
inquiry as well as the other disciplines of arts and humanities.
    A project in Iowa is another example of museum-school 
collaborations. With support from IMLS, the Grout Museum District 
provided a weeklong Museum School to 1,000 third grade students from 
the Waterloo and Cedar Falls public schools district. Children, their 
families and teachers experienced local history. Students applied their 
lessons in math, science, and language to real-world situations while 
gaining a greater understanding and appreciation for how their 
community fits into the larger world.
    With grants from IMLS, these museums developed programs that 
addressed the specific needs of their communities. These examples, 
however, also represent a much larger commitment museums are making to 
public education. A recent IMLS survey also shows that museum 
expenditures in support of K-12 education now exceed $1 billion 
annually. In fact, the percentage of museums' median annual operating 
budgets spent on educational programming has increased four-fold just 
since 1996. With more than 18 million instructional hours in 2000-01, 
museums are offering a broad range of services to schools. They are key 
partners in developing curriculum, providing professional development 
for teachers, and offering direct services to students through visits 
to museums, classroom visits by museum educators, and Web based 
educational materials and programs. In some communities, students 
attend schools that are actually housed in museums and run by museum 
staff.
    The commitment of museums to education does not end with their ties 
to formal education. Museums are also places of lifelong learning. They 
provide an environment rich with opportunity for intergenerational 
learning and sharing where children, their parents, and their 
grandparents can work together to connect ideas and experiences in 
direct, vivid and meaningful ways. Museum visitors can come to know the 
struggles and accomplishments of different cultures and unfamiliar 
people and achieve a deeper understanding of their own families, 
neighborhoods, the country in which they live, and the world.
    Museums do not undertake this educational responsibility without an 
equal commitment to the care, protection and preservation of our 
nation's heritage found in their collections. There are more than 750 
million objects and living specimens being held in the public trust by 
American museums. This number grows as museums continue to acquire the 
material patrimony of our civilization to assure that they remain 
publicly available for generations to come. A rough estimate places the 
annual expenditure for the care of those public collections at $1.1 
billion. The need for conservation is ongoing and these costs will 
continue to grow with time as collections expand and age.
    IMLS makes significant investments in both direct support for 
conservation and assistance to museums with identifying and 
prioritizing their conservation needs. In 2003, Conservation Support 
grants were awarded to 86 institutions. This program requires a 1:1 
match and allows institutions such as the Wentworth-Coolidge Mansion in 
Portsmouth, New Hampshire to make much needed repairs to its gutters, 
improve drainage on the site, and make other improvements that will 
prevent further moisture damage to this national historic landmark and 
its unique contents.
    Through the Conservation Assessment Program, Idaho's Twin Falls 
County Historical Museum, Texas' Sam Houston Memorial Museum, and 
Alabama's Magnolia Grove-Hobson Memorial Shrine were able to have a 
general conservation survey of their collections, environmental 
conditions and sites. Conservation priorities are identified by 
professional conservators who spend 2 days on-site and provide a 
written report to help museums develop strategies for improved 
collections care. Many institutions use the report for long-term 
planning and for attracting financial support to meet the conservation 
needs identified in the report.
    America's museums, by their missions and tax exempt status, exist 
for the benefit of the public. The museums in your states and across 
the country are responsible for preserving the past, defining the 
present and educating for our future. The leadership and support of the 
federal government is critical to each of our nation's museums. The 
United States has a strong tradition of financial support for the 
public service mission of museums through public-private partnerships. 
Museums have three major income sources--private charity and foundation 
grants, earned and investment income, and government funding. Private 
charity represents 36 percent of museums' budgets, earned and 
investment income represents 33 percent and 11 percent respectively, 
and government funding--local, state, and federal--is 25 percent of 
museums' budgets. The largest portion of government funding is from the 
local and state level, with only 2.5 percent coming from the federal 
government. But it is a critical 2.5 percent.
    This diversity of funding sources for museums is critical to their 
long term financial stability, but the recent economic uncertainty has 
strained all sources of funding for museums. The good news is that 
museums are remarkably resilient institutions and are determined to 
continue with their full array of public programs. This commitment is 
due in part to IMLS awards made through the Museum Assessment Program.
    More commonly known as MAP, participating museums can select from a 
menu of four assessments and receive a professional review of their 
operations in that area. Following the review, museums are given 
recommendations and technical assistance which help them identify how 
they measure up to best practices in the field and where they might 
need improvement. This independent report informs an institution as it 
sets priorities and plans to become a better museum. In 2003, 170 
grants were awarded to institutions in 42 states, including the East 
Ely Railroad Depot Museum in Nevada, Kent Plantation House in 
Alexandria, LA, and the Fort Worth Botanic Garden in Texas.
    Museums must remain responsive to the needs of their communities. 
The public is concerned about education and our economy. Our 
institutions are seeking additional new ways to collaborate with the 
schools and teachers to instill in every child a passion for learning. 
We are working with local officials to make our communities vibrant and 
attractive to businesses and tourists. Our nation's museum directors 
and staff are deeply committed to their work and to serving the public. 
Every day in our nation's museums, thousands of museum educators greet 
school buses of children, historians and scientists research our past, 
and registrars catalog and track millions of objects. And museum 
directors across the country are always seeking the resources to 
sustain their institutions so they can fulfill their educational and 
stewardship responsibilities.
    I particularly applaud IMLS and the Administration for recognizing 
that the needs of our museums are not just for the collections or the 
public programs, but also for the ongoing professional development of 
the leaders and staff within our museums--directors, curators, 
registrars, educators, conservators, and many others. In the fiscal 
year 2005 budget, the Administration has requested $1 million for the 
professional development of museum personnel. We will need to invest 
more, but I believe this to be a good start.
    A commitment from the federal government is needed to help museums 
and their staff fulfill their public obligations. In partnership with 
IMLS we believe we can do just that, and I stress the word partnership. 
We fully support the strong U.S. tradition of public-private 
partnerships supporting museums' public service mission. We believe 
that IMLS is in a unique position with its expertise and flexibility to 
help us address these current challenges and to help our museums plan 
for the future. What the agency lacks is the financial resources.
    IMLS needs sufficient funding to help our museums ensure that 
current and future generations have the fullest access to, and 
understanding of, our national heritage through the highest quality 
exhibitions, education programs and digitized materials for the Web. 
Innovation in museums allows them to better serve the public. As I 
noted before, we believe the administration's fiscal year 2005 request 
for the museum programs at IMLS is an important step towards further 
realizing the potential of museum education and community involvement.
    We recognize, Mr. Chairman, that you and your colleagues are under 
intense pressure to balance the funding needs of the many worthy 
programs under your jurisdiction. As you consider that balance, I am 
sure you will recall that last fall you and your colleagues strongly 
endorsed the mission of IMLS by reauthorizing the agency for another 5 
years. That is why we believe $41.4 million for fiscal year 2005 is a 
reasonable and fiscally responsible budget that will serve the public's 
demand for museums that are relevant, inspiring and accessible.
    We appreciate the opportunity to testify before the committee today 
and thank you all for your support of our nation's museums and the 
museum program at IMLS.
                                 ______
                                 
          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 2005 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 
2003, the RRB paid $8.9 billion in retirement/survivor benefits to 
about 666,000 beneficiaries, and $94.1 million in unemployment/sickness 
insurance benefits to about 37,000 claimants.
    As we explain in greater detail below, the RRB's budget request for 
fiscal year 2005 is comprised of two parts, $110.66 million for day-to-
day administrative expenses, plus $4,947,800 for information technology 
infrastructure improvements. This request is intended to meet immediate 
and significant needs of the agency in two principal areas: (1) 
additional staffing, not only to manage current workloads, but even 
more importantly, to begin the process of recruiting and training to 
meet the RRB's staffing needs going forward; and, (2) modernization and 
improvement of our information technology infrastructure to ensure that 
the RRB's automated systems will continue to function effectively and 
efficiently in the future. These are pressing needs that must be 
addressed. However, at the President's proposed budget level of $102.6 
million, not only would these critical, longer-term needs not be 
funded, but the RRB's ability to continue to deliver quality and timely 
service in the short term would also be severely jeopardized.
         request for administrative funding in fiscal year 2005
    The RRB has demonstrated fiscal responsibility over the years by 
requesting only what was needed to administer the programs under the 
Railroad Retirement and Railroad Unemployment Insurance Acts for which 
we are responsible. Even though our request is $13 million over the 
President's proposed budget, it represents our considered opinion which 
will enable us to continue our successful stewardship of the 
entitlement programs for our constituents. In considering this 
additional funding, we believe it is appropriate to look at the 
financial position of the benefit programs we administer in their 
entirety. Specifically, we would like to point to the successful 
implementation of the Railroad Retirement and Survivors' Improvement 
Act of 2001. Under that Act, we transferred a net $20.39 billion to the 
National Railroad Retirement Investment Trust (NRRIT) from its 
inception in February 2002 through September 30, 2003. The funds held 
by the NRRIT grew to $23 billion during that period, reflecting a 19.9 
percent return on investments in fiscal year 2003, a market value gain 
of $2.7 billion. By comparison, our requested increase in 
administrative funding represents less than one-half of 1 percent of 
that increase.
    A funding level of $110.66 million for ongoing operations would 
allow the RRB to maintain our current high levels of timeliness and 
accuracy in claims processing operations and to provide the quality 
service our customers expect. Our requested appropriation would provide 
sufficient funding for 1,046 FTE's--the same number we plan to use in 
fiscal year 2004. The additional funding would prevent a costly and 
disruptive reduction-in-force and allow us to hire some new employees 
for essential positions.
    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. Our immediate concern today is the aging of our 
workforce. The bulk of the additional funding in fiscal year 2005, is 
to mitigate the expected loss of experienced staff by hiring and 
training new employees and to increase available resources for advances 
in information technology.
    This funding level would also allow us to provide resources for 
important administrative needs, including travel, training and overtime 
to support our service to the public. We would also be able to 
reinstate employee benefit programs, including transit benefit 
subsidies, which have been suspended due to insufficient funding. At 
our request level, an additional $300,000 would also be available for 
information technology. We would use this money to replace aging 
desktop computing equipment and software.
               enterprise architecture capital asset plan
    Our budget request includes funding the first year of our 
Enterprise Architecture Capital Asset Plan for fiscal years 2005-2007, 
which addresses the major initiatives needed to implement our target 
enterprise architecture. This request is highlighted separately because 
of its significance to the long-term continued viability of agency 
programs, and the realization that movement toward the desired target 
architecture will be a multi-year effort. We are requesting an 
additional $4,947,800 to begin these initiatives in fiscal year 2005.
    Gartner Consulting has recommended that we investigate alternatives 
for our Computer Associates' Integrated Database Management System 
(IDMS) and be prepared to actively retire the platform beyond 2006. The 
Enterprise Architecture Capital Asset Plan includes funding for 
contractual assistance, tools and training to begin this transition as 
well as related initiatives. Funding has been requested in four key 
areas:
  --Infrastructure modernization initiative ($1,445,000).--A variety of 
        improvements to the agency's infrastructure are required to 
        support our target enterprise architecture. This initiative 
        provides agency-wide support at the desktop, systems and 
        network levels. Components include improvements to our data 
        center infrastructure, client/server software and information 
        security.
  --Modernization blueprint initiative ($1,992,800).--The primary 
        feature of this initiative is the conversion of the RRB's 
        database from IDMS to a relational database management system. 
        The agency's day-to-day operations are heavily dependent on 
        application systems that are based on IDMS technology. Delaying 
        this transition in fiscal year 2005 would create a high risk 
        that the loss of these systems could compromise the RRB's 
        ability to pay benefits and fulfill its mission in the future.
  --Metadata repository initiative ($555,000).--This project funds the 
        development of a preliminary metadata repository, which is a 
        critical success factor for implementation of inter-
        governmental and internal data sharing services. The metadata 
        repository will enable us to integrate data from various 
        sources and mediums, including railroad employers and 
        employees, annuitants and beneficiaries, State agencies, and 
        other Federal government agencies.
  --E-Government service delivery initiative ($955,000).--This project 
        funds our initiative to expand electronic services to the 
        public via the RRB Internet website. In addition, this 
        initiative funds the continued expansion of a system being 
        developed to meet the requirements of the Government Paperwork 
        Elimination Act, which will permit private employers to store 
        and file electronically, with executive agencies, forms 
        containing information pertaining to employees. We will expand 
        services to railroad employers by providing for on-line 
        completion or transmission of all employer paper forms.
              president's proposed fiscal year 2005 budget
    The President's proposed budget includes $102.6 million for RRB 
administrative expenses in fiscal year 2005. This total includes $100.5 
million for the ongoing costs of current agency operations. 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).
    We believe that an appropriation at this level would seriously 
undermine the quality and timeliness of services to our customers in 
fiscal year 2005. The negative impact would also carry forward to 
subsequent years due to staff reductions, administrative cutbacks, and 
further postponement of important automation initiatives.
    The reductions at the President's proposed level of funding for 
fiscal year 2005, would undermine the RRB's ability to process claims 
in a timely manner, including those for retirement, survivor and 
disability annuities. Delays would also occur in processing subsequent 
annuity adjustments, requests for reconsideration and employer reports. 
Customer outreach services would be reduced, creating delays in 
responding to inquiries and taking applications for benefits.
    Customer service would also be affected if we are required to 
contract for the use of a non-governmental disbursement agent in fiscal 
year 2005. Not only would this action increase the RRB's operating 
costs, but our Inspector General and others have questioned whether 
certain services provided by the Department of the Treasury, such as 
reclamations, would be provided as effectively by a non-governmental 
disbursement agent. On March 20, 2003, we submitted a legislative 
proposal to permit the Department of the Treasury to continue to make 
payments of railroad retirement benefits.
    We would need to make extremely deep cuts in funding for 
administrative needs throughout the RRB to operate at the President's 
proposed level in fiscal year 2005. Because 80 percent of our budget is 
used for employees' salaries and benefits, a major staff reduction 
would be unavoidable. We estimate that the President's proposed funding 
would support only 969 full-time equivalent staff years (FTE's), which 
is 77 FTE's less than we now plan to use in fiscal year 2004. To reduce 
agency staffing, we would need to impose a year-long hiring freeze, 
leaving positions unfilled as vacancies occur through attrition. We 
would also need to conduct a reduction-in-force of 39 employees at the 
beginning of fiscal year 2005. The RIF would cost an estimated 
$473,000.
    Information technology (IT) funding would also be severely limited. 
At the President's proposed level of funding, the RRB would have only 
$1,325,000 for investments under our ongoing IT Capital Plan. Although 
e-Government initiatives are essential to maintaining a high level of 
public service and improving productivity in coming years, we would 
need to severely curtail purchases of desktop computing equipment and 
software needed by the agency's staff. In addition, we would have no 
funding available for the major projects in our Enterprise Architecture 
Capital Asset Plan. This plan includes funding to begin migration of 
agency systems from the Integrated Database Management System, which is 
nearing obsolescence. Not funding this initiative creates a high risk 
that the loss of these systems could compromise the RRB's ability to 
pay claims and fulfill our mission in the future.
    The proposed budget would also provide insufficient funding for 
other administrative needs, many of which have been sharply reduced in 
recent years. We have already suspended several of our employee benefit 
programs, including transit benefit subsidies and certain award 
programs, which had contributed considerably to employee morale in the 
past. These programs would continue to be suspended in fiscal year 
2005. We would also continue to severely limit funds allocated for 
variable expenses, such as overtime, travel, training, supplies and 
equipment.
    In addition to the requests for administrative expenses, the 
Administration's budget includes $108 million to fund the continuing 
phase-out of vested dual benefits, and $150,000 for interest related to 
uncashed railroad retirement checks.
                  financial status of the trust funds
    Railroad Retirement Accounts.--As a result of $18.9 billion in net 
transfers to the National Railroad Retirement Investment Trust, the net 
position of the railroad retirement accounts decreased by $18.1 billion 
in fiscal year 2003, to $551.1 million.
    In June 2003, we released the 22nd Actuarial Valuation, including 
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 actuarial valuation 
contains generally favorable information concerning railroad retirement 
financing. However, the long-term stability of the system, under its 
current financing structure, is still dependent on future employment 
levels and investment returns. The valuation 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 
2003 was $51.5 million, an increase of $35.8 million from the previous 
year. The RRB's latest annual report on the financial status of the 
railroad unemployment insurance system, issued in June 2003, was 
generally favorable. The report indicated that even as maximum daily 
benefit rates rise 44 percent (from $52 to $75) from 2002 to 2013, 
experience-based contribution rates are expected to keep the 
unemployment insurance system solvent. The small loan made in fiscal 
year 2002 was repaid in May 2003, and no new loans are anticipated even 
under our most pessimistic assumption. The average employer 
contribution rate remains well below the maximum throughout the 
projection period, but a 1.5 percent surcharge is now in effect and is 
expected for calendar year 2005 and probably 2006. 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. We will be happy to provide further information in 
response to any questions you may have.
