[House Hearing, 105 Congress]
[From the U.S. Government Publishing Office]



 
                 DEPARTMENTS OF LABOR, HEALTH AND HUMAN
               SERVICES, EDUCATION, AND RELATED AGENCIES
                        APPROPRIATIONS FOR 1998

========================================================================

                                HEARINGS

                                BEFORE A

                           SUBCOMMITTEE OF THE

                       COMMITTEE ON APPROPRIATIONS

                         HOUSE OF REPRESENTATIVES

                       ONE HUNDRED FIFTH CONGRESS

                              FIRST SESSION
                                ________

  SUBCOMMITTEE ON THE DEPARTMENTS OF LABOR, HEALTH AND HUMAN SERVICES, 
                    EDUCATION, AND RELATED AGENCIES

                 JOHN EDWARD PORTER, Illinois, Chairman

C. W. BILL YOUNG, Florida        DAVID R. OBEY, Wisconsin
HENRY BONILLA, Texas             LOUIS STOKES, Ohio
ERNEST J. ISTOOK, Jr., Oklahoma  STENY H. HOYER, Maryland
DAN MILLER, Florida              NANCY PELOSI, California
JAY DICKEY, Arkansas             NITA M. LOWEY, New York
ROGER F. WICKER, Mississippi     ROSA L. DeLAURO, Connecticut
ANNE M. NORTHUP, Kentucky        

NOTE: Under Committee Rules, Mr. Livingston, as Chairman of the Full 
 Committee, and Mr. Obey, as Ranking Minority Member of the Full 
 Committee, are authorized to sit as Members of all Subcommittees.

S. Anthony McCann, Robert L. Knisely, Susan E. Quantius, Michael K. Myers,
                  and Francine Mack, Subcommittee Staff
                                ________

                                 PART 7A

                              (Pages 1-1567)

               TESTIMONY OF MEMBERS OF CONGRESS AND OTHER
                INTERESTED INDIVIDUALS AND ORGANIZATIONS

                              

                                ________

                     U.S. GOVERNMENT PRINTING OFFICE

 41-305 O                   WASHINGTON : 1997

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             For sale by the U.S. Government Printing Office            
        Superintendent of Documents, Congressional Sales Office,        
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                       COMMITTEE ON APPROPRIATIONS                      

                   BOB LIVINGSTON, Louisiana, Chairman                  

JOSEPH M. McDADE, Pennsylvania         DAVID R. OBEY, Wisconsin            
C. W. BILL YOUNG, Florida              SIDNEY R. YATES, Illinois           
RALPH REGULA, Ohio                     LOUIS STOKES, Ohio                  
JERRY LEWIS, California                JOHN P. MURTHA, Pennsylvania        
JOHN EDWARD PORTER, Illinois           NORMAN D. DICKS, Washington         
HAROLD ROGERS, Kentucky                MARTIN OLAV SABO, Minnesota         
JOE SKEEN, New Mexico                  JULIAN C. DIXON, California         
FRANK R. WOLF, Virginia                VIC FAZIO, California               
TOM DeLAY, Texas                       W. G. (BILL) HEFNER, North Carolina 
JIM KOLBE, Arizona                     STENY H. HOYER, Maryland            
RON PACKARD, California                ALAN B. MOLLOHAN, West Virginia     
SONNY CALLAHAN, Alabama                MARCY KAPTUR, Ohio                  
JAMES T. WALSH, New York               DAVID E. SKAGGS, Colorado           
CHARLES H. TAYLOR, North Carolina      NANCY PELOSI, California            
DAVID L. HOBSON, Ohio                  PETER J. VISCLOSKY, Indiana         
ERNEST J. ISTOOK, Jr., Oklahoma        THOMAS M. FOGLIETTA, Pennsylvania   
HENRY BONILLA, Texas                   ESTEBAN EDWARD TORRES, California   
JOE KNOLLENBERG, Michigan              NITA M. LOWEY, New York             
DAN MILLER, Florida                    JOSE E. SERRANO, New York           
JAY DICKEY, Arkansas                   ROSA L. DeLAURO, Connecticut        
JACK KINGSTON, Georgia                 JAMES P. MORAN, Virginia            
MIKE PARKER, Mississippi               JOHN W. OLVER, Massachusetts        
RODNEY P. FRELINGHUYSEN, New Jersey    ED PASTOR, Arizona                  
ROGER F. WICKER, Mississippi           CARRIE P. MEEK, Florida             
MICHAEL P. FORBES, New York            DAVID E. PRICE, North Carolina      
GEORGE R. NETHERCUTT, Jr., Washington  CHET EDWARDS, Texas                 
MARK W. NEUMANN, Wisconsin             
RANDY ``DUKE'' CUNNINGHAM, California  
TODD TIAHRT, Kansas                    
ZACH WAMP, Tennessee                   
TOM LATHAM, Iowa                       
ANNE M. NORTHUP, Kentucky              
ROBERT B. ADERHOLT, Alabama            

                 James W. Dyer, Clerk and Staff Director









DEPARTMENTS OF LABOR, HEALTH AND HUMAN SERVICES, EDUCATION, AND RELATED 
                    AGENCIES APPROPRIATIONS FOR 1998

                              ----------                              


 TESTIMONY OF MEMBERS OF CONGRESS AND OTHER INTERESTED INDIVIDUALS AND 
                             ORGANIZATIONS

                              ----------                              

                                           Tuesday, April 15, 1997.

                                WITNESS

KENNETH I. BERNS, M.D., AD HOC GROUP FOR MEDICAL RESEARCH FUNDING

    Mr. Miller [assuming Chair]. The subcommittee hearing will 
begin.
    This is the first day of our public witness hearing 
schedule. Mr. Porter, the chairman of the subcommittee, has a 
health problem of his own with a disk problem. So Mr. Porter is 
unfortunately unable to actively participate in the meeting and 
has asked me to chair the meeting this morning. I am glad that 
Congresswoman Pelosi from California is with us this morning.
    So we will begin, and we will ask the witnesses to hold to 
the five minute rule. We have to hold to a five minute rule up 
here too, so we would appreciate it if you could, and then we 
will be able to proceed along.
    First with us this morning is Dr. Berns. If you would 
proceed.
    Dr. Berns. Thank you. Good morning.
    My name is Kenneth Berns and I am the Chairman and 
Professor of Microbiology at Cornell University Medical 
College. This morning, I am representing the Ad Hoc Group for 
Medical Research Funding which is a coalition of nearly 200 
organizations representing patient groups, medical and 
scientific societies, academic and research institutions and 
industry.
    We wish to acknowledge and thank all of you for the 
difficult choices this subcommittee has made in the past two 
years that have enabled the extraordinary increase in the NIH 
budget. To best assess the available research opportunities, 
the Ad Hoc Group relies on the professional judgment of the NIH 
leadership. For fiscal year 1998, the Ad Hoc Group supports the 
9 percent increase identified by Dr. Varmus. We recognize that 
a 9 percent increase in the NIH represents a high figure in the 
current budget climate.
    However, we believe that this proposal represents a 
realistic assessment of the available opportunities. And we 
have confidence that you will do everything possible to enable 
the NIH budget to take advantage of these opportunities.
    The benefits of medical research are realized on several 
levels: improved prevention, diagnosis and treatment of 
disease, enhanced quality of life, and contributions to a 
stronger economy through decreased health care costs, increased 
productivity and the development of thriving biotechnology and 
pharmaceutical industries.
    The highest form of success against disease and disability 
is attained through prevention. NIH funded researchers have 
been successful in the development of new vaccines and 
screening techniques that allow individuals to live healthy 
lives, uninterrupted by certain diseases. This work has major 
implications for decreasing health care costs and I would like 
to cite two examples from my own area of infectious diseases.
    Last December, I participated in an external review of the 
Laboratory of Infectious Diseases at the National Institute of 
Allergy and Infectious Diseases. This one laboratory reported 
major strides in the development of two new vaccines. They had 
played a major role in collaborating with Smith Klein Beecham 
in the development of the first approved vaccine against 
hepatitis A, which has been available to the public now for 
about two years. Hepatitis A virus, you may remember, was 
recently associated with strawberries present in school 
lunches. It is a serious problem affecting millions of people 
every year.
    Additionally, the laboratory has under FDA review now their 
first vaccine, which is a first against retroviruses, the 
leading cause of serious life-threatening diarrheal disease in 
young children around the world. This vaccine has already been 
recommended for use in developed countries by the World Health 
Organization.
    In a similar manner, the National Institute of Child Health 
and Human Development developed a successful vaccine against 
hemophilus influenza type B. This vaccine has greatly decreased 
the incidence of middle ear infections in children and 
completely protects against the meningitis caused by the 
bacterium. There used to be 10,000 to 15,000 cases in this 
country a year of hemophilus meningitis. This was a leading 
cause of mental retardation. As of now, the vaccine is 
estimated to save about $450 million every year.
    Not only does NIH research make Americans more productive 
employees through reductions in disability and disease, NIH 
also bolsters the economy by stimulating industry. As an 
example, NIH supported research helped in the development of 
the biotech industry, which had sales last year of nearly $11 
billion and provided 118,000 high tech jobs.
    The member organizations of the Ad Hoc Group vigorously 
urge you to appropriate a 9 percent increase for fiscal year 
1998 in the NIH budget to allow it to continue its research 
efforts that help prevent disease and overcome serious illness 
that enable disabled individuals to return to work and lead 
productive, independent lives.
    Thank you, Mr. Chairman.
    [The prepared statement of Kenneth Berns, M.D., follows:]

[Pages 3 - 8--The official Committee record contains additional material here.]


    Mr. Miller. Thank you, Dr. Berns. We appreciate it. Nine 
percent would be a noble goal, but as you say, we have tough 
decisions to make. We have strong bipartisan support, and we 
appreciate the great work you are doing.

                              ----------                              

                                           Tuesday, April 15, 1997.

                                WITNESS

WILLIAM E. ARNOLD, AIDS DRUG ASSISTANCE PROGRAM

    Mr. Miller. We will now go to William Arnold, who is Co-
Chair of the AIDS Drug Assistance Program. Mr. Arnold, if you 
all would identify yourselves for the record, we would 
appreciate it, and the organization you are representing, and 
proceed with your testimony. Welcome.
    Mr. Arnold. Thank you, Mr. Chairman.
    I am Bill Arnold, from the ADAP Working Group. I have with 
me today my Co-Chair, Ms. Dorothy Cable, on the far left, and 
an active member of the ADAP Working Group, Gary Rose, from 
AIDS Action Council.
    Good morning. The ADAP Working Group would like to thank 
the committee for this opportunity to testify. As I just 
stated, I am Bill Arnold, and I am testifying this morning on 
behalf of the ADAP Working Group.
    In 1996, the HIV-AIDS epidemic entered a new era, one 
marked by hope based upon advances in understanding HIV 
infection and treatments. It is the hope of lives saved, lives 
improved and the economic costs of a disease reduced. 
Transformation of this hope into reality for HIV-infected 
Americans depends upon informed policy decisions. One of those 
decisions is the appropriate funding level for AIDS Drug 
Assistance Programs.
    Dr. Michael Sag, of the University of Alabama, one of the 
Nation's leading HIV experts, recently said ``We used to try to 
keep patients alive until next Christmas. Now our goal is to 
keep them alive for the next two or three decades.'' Dr. Sag, 
Dr. Chip Schooley, and Ms. Mary Fisher will be among those 
speaking at the Congressional briefing, which the ADAP Working 
Group is presenting here in the Rayburn Building for members 
and staff two days from now. I hope that many members of this 
committee and their staffs will be able to attend that 
briefing.
    New science and new clinical knowledge are driving the 
development of the new PHS-NIH principles and guidelines for 
HIV disease therapy. They will urge physicians to treat HIV 
disease earlier and more aggressively for the purpose of 
delaying or preventing progression of HIV infection into more 
advanced stages of disease. Such treatment will mean, and the 
guidelines will suggest a combination of regimens, which will 
include a higher number of individual medicines and newer more 
expensive medicines.
    Unfortunately, it is unlikely that many public programs 
will be financially able to offer the new standard of care to 
patients who may need it. Among the hardest hit will be those 
who depend upon the ADAP programs. The pressure will continue 
to come from increasing numbers of people enrolling or trying 
to enroll in the AIDS Drug Assistance Programs and the 
evaluation of the standard of care under treatments with more 
and more powerful medicines at earlier stages of HIV disease. 
This in the context of an expanding pool of uninsured or under-
insured Americans.
    During the past year, even without any Federal level 
national guidance, ADAP enrollees increased utilizations of 
medications by 23 percent. The total dollar cost increased by 
32 percent. Basic individual enrollments in the programs 
increased by 14 percent.
    Last September, the ADAP Working Group released its first 
pharmoeconomic computer model projection. At that time, 
projecting fiscal year 1997 ADAP funding needs. Events since 
then have borne out the accuracy of that model. Thanks to the 
Administration and to Congress, ADAP actually achieved the 
funding level in targeted ADAP funding of $160 million in 
fiscal year 1997, about $80 million short of what the ADAP 
Working Group had projected.
    Accordingly, we do expect severe ADAP progress distress to 
show in the second half of fiscal year 1997. In the meantime, 
State and other funding sources to ADAP have increased more 
rapidly than we expected. The actual fiscal year 1997 shortfall 
we are now projecting is less than $80 million. It is down to 
about $66 million.
    The impact of these trends is already evident. This 
Thursday, at our Congressional briefing, the ADAP Working Group 
will release preliminary findings from a survey of all ADAP 
programs. Four states have yet to even add the new protease 
inhibitor therapies to their available drug list. Many ADAP 
programs have been forced to limit access to the drugs, which 
they will provide 17 programs, including high incidence AIDS 
States like Georgia and Florida, are capping, limiting or 
rationing their coverage in some way.
    Such fiscal prudence has helped to avoid program bankruptcy 
in many States, but the end result is obviously that these 
programs are unable to provide an adequate level of service or 
access.
    Presentation at the Fourth Conference on Retroviruses and 
Opportunistic Infections offered persuasive evidence that 
aggressive treatment similar to what we expect the PHS-NIH 
guidelines to recommend does result in significant reductions 
in cost for hospitalizations, expensive opportunistic infection 
treatments, home health care and hospice services.
    A few days ago, Bruce Vladek, Administrator of HCFA, spoke 
publicly about using Medicaid waivers and other policy changes 
to enable Medicaid to provide new HIV-AIDS earlier in the 
disease process, before people are so sick as to be disabled, 
and at a time when we now know benefits are likely to be 
significantly greater. He stated the likelihood that this 
approach will prove to be budget neutral. Changes of this type 
could greatly relieve some pressures on ADAP, but would not 
replace the need for ADAP.
    Vice President Gore has since announced the 
Administration's strong support of this concept. 
TheAdministration's statement and the budget neutral theme have now 
been widely reported in the media. We have tracked the actual increases 
in ADAP and it is clear that almost 1,000 new clients each month are 
utilizing the ADAP program.
    A computer model developed by a respected pharmoeconomist 
was used to estimate the cost of providing a standard of care 
to those utilizing ADAP on a month by month basis out through 
March of 1999. This same model predicted expenditures in New 
York State's ADAP program within 5 percent of its actual totals 
last year.
    If you wish to leave the record open at this point so that 
those materials which I just referred to can be included, we 
will be glad to provide them to you.
    The model now projects a shortfall in the current fiscal 
year 1997 funded program year of $66,895,741. The ADAP Working 
Group hopes that Congress and the Administration will act 
together to address this need before the AIDS-affected 
communities and headlines are again full of the news on 
patients losing their treatment and the ADAP program shutting 
down.
    Today I speak mainly, however, to the need for the correct 
funding level for fiscal year 1998. We understand the 
Administration's position to be that they are asking for no 
increase in the targeted ADAP amount above last year's $167 
million, which we clearly see will result in a shortfall. 
However, they have promised to revisit the need for ADAP when 
they have had a chance to look at our data, our need 
projections, the results of the National ADAP survey now going 
on, and their own Government data and analysis processes are 
completed.
    We believe the fiscal year 1998 need to be $131 million in 
additional funding above the President's budget request of $167 
million, or a fiscal year 1998 total of $299 million in 
targeted ADAP funding under Title II of the Ryan White CARE Act 
for fiscal year 1998. State and other ADAP support has doubled 
to about $100 million since our last model projection eight 
months ago. However, State and other sources of support for 
ADAP will also need to increase during this period by an 
additional $46 million for the period.
    The decision to fully fund ADAP is a sound policy decision. 
There appears to be an emerging consensus that it will make 
sense in today's world of fiscal restraint and budget balancing 
as well. We have lost too many people in the 16 years of this 
epidemic. Let us work together so that we may lose as few of 
our fellow Americans with HIV as possible.
    I have submitted a written statement for the record. Thank 
you and I will be glad to answer any questions.
    [The prepared statement of William E. Arnold follows:]

[Pages 12 - 19--The official Committee record contains additional material here.]


    Mr. Miller. Thank you, Mr. Arnold, for your very fine 
testimony. We have come a long way, as we all know, and this 
committee has been as responsive as possible under our fiscal 
constraints we operate under to satisfy that particular need. 
Hopefully we can continue.
    Did you have any comments, Ms. Pelosi?
    Ms. Pelosi. Just briefly, Mr. Chairman. I too want to thank 
Mr. Arnold and others for their presentation and the hard work 
that you have put into that. We are eagerly awaiting the 
standards of care report that the Administration will be 
releasing. I hope very shortly that it will give some direction 
to the committee as well.
    But you made a very comprehensive report and it will be 
very valuable to the committee. Thank you for your hard work 
and for your testimony today.
    Mr. Miller. Thank you, Mr. Arnold.

                              ----------                              

                                           Tuesday, April 15, 1997.

                               WITNESSES

MICHAEL EHRLICH, M.D., AMERICAN ACADEMY OF ORTHOPAEDIC SURGEONS
TAYLOR BREEDLOVE
ROY BREEDLOVE
JUDGE DANA RASURE

    Mr. Miller. Next, we will have Dr. Michael Ehrlich, 
Chairman, Committee on Research. Accompanying him is Taylor 
Breedlove, his patient, of Tulsa, Oklahoma. He is representing 
the American Academy of Orthopaedic Surgeons.
    Dr. Ehrlich. Mr. Chairman and members of the committee, I 
am Dr. Michael Ehrlich, Professor and Chairman of the 
Department of Orthopaedics at the Brown University School of 
Medicine in Providence, and Chairman of the Committee on 
Research of the American Academy of Orthopaedic Surgeons.
    With me today is my patient, Taylor Breedlove, of Tulsa, 
Oklahoma. She is accompanied by her mother, Judge Dana Rasure, 
and her father, Attorney Roy Breedlove.
    Our formal statement has been submitted for the record.
    I would just like to share with you briefly the benefits of 
the musculoskeletal research and how the Federal investment in 
our medical research at the National Institutes of Arthritis 
and Musculoskeletal and Skin Disease has given my 11 year old 
patient, Taylor Breedlove, and others, hope for the future.
    Musculoskeletal disease are chronic. However, the suffering 
and the patterns of chronic disease can't be appreciated until 
you see how it affects children and their families. For each 
single child who is disabled, a half million dollars is lost 
from their contribution to the work force in their life.
    Taylor Breedlove was born paralyzed from the waist down due 
to failure of her spine to form, a condition called sacral 
agenesis. Taylor's hips dislocated early in life because of her 
abnormal muscles. With dislocated hips, she was very stiff and 
unstable and walking would have been impossible.
    Ten years ago, we would not have operated on these 
patients. There would have been too much pressure on the hip if 
we placed it back into the socket. In those cases, the bone, 
the hip bone, would have died. Modern research taught us about 
the circulation to the hip, and how the hip could be preserved. 
These discoveries are the results of basic and clinical 
research.
    It is a combination of expanding and testing the knowledge 
base that makes the Federal investment in biomedical research 
worthwhile. The problems that Taylor's family faced and still 
having to face are monumental. Although we have made some 
progress, conditions involving damage to the muscles, nerves 
and bones require better research to cure and treat them.
    Taylor's father, Roy Breedlove, will explain their odyssey 
for help and the impact on his family's lives. Then you will 
hear from Taylor, how she now functions on a day to day basis.
    Mr. Breedlove. Thank you, Mr. Chairman.
    Taylor is our only child. She was born 11 years ago. We 
were told she had spina bifida, which is the most common of the 
neural tube defects, hydrocephalus, which required shunting of 
the brain to keep the cerebrospinal fluid out of the ventricles 
of the brain. She was born with sacral agenesis, which means an 
absence of the portion of her spine. She had scoliosis, which 
is a lateral curvature of the spine. She also suffers from 
kyphosis, which is an outward curvature of the spine, and 
paralysis of the lower extremities.
    Her combination of medical issues was described to us by 
physicians we initially saw in Tulsa, Oklahoma, as being highly 
unusual. Before Taylor was one year old, we had visited with 
physicians in Tulsa, Oklahoma City, Kansas City and 
Minneapolis. We were unable to believe that nothing could be 
done to help our child. We were advised that the best medical 
treatment would not even allow her to sit in a wheelchair 
without her chest collapsing.
    After numerous trips to Minnesota and a second opinion in 
Indianapolis, Indiana, we were most discouraged. Fortunately, 
Dr. Ehrlich was recommended to us, as it turns out, by another 
family in Tulsa, Oklahoma. In Dr. Ehrlich's opinion at the time 
we saw him, a child who was approaching five years of age, 
which is how old Taylor was at this period of time when we were 
seeking assistance, was almost too old to be a candidate for 
surgery to locate her hips back into the sockets.
    Of course, you can imagine how frustrating that was to her 
parents. At the time, we thought we tried fairly hard to find a 
doctor who was willing to tackle, which we understood would be 
a most difficult case.
    Putting Taylor's hips back into their sockets would 
ultimately require eight weeks of traction at a hospital in 
Rhode Island before surgery and then a body cast that she could 
wear for four months after surgery. Fortunately for Taylor, her 
surgery was successful. Before long, she was upright for the 
first time and able to bear weight. She quickly progressed to 
being able to use a walker and walk around the home on a 
walker.
    To everyone's amazement, and most importantly to Dr. 
Ehrlich's amazement, she eventually used forearm crutches. 
Taylor can even walk backwards for a short distance.
    We are convinced that Taylor's future is bright. She is 
doing exceptionally well in the fifth grade at a college 
preparatory school. She is extremely happy, she is a very 
healthy child with the exception of the few bouts with a cold 
or that sort of thing. She has been extremely healthy other 
than the obvious conditions I have outlined.
    I am convinced that her medical costs are much less than 
they would have been had she been sitting in a corner chair, 
which is what was recommended to us at the time. Dr. Ehrlich 
provided Taylor with an opportunity to take some first steps to 
independence. Taylor has seized that opportunity and run with 
it. We would ask that this committee seize the opportunity to 
help so many by funding orthopaedic research.
    Ms. Breedlove. Good morning, Mr. Chairman.
    My name is Taylor Breedlove. I am 11 years old. I am in the 
fifth grade at Holland Hall Middle School in Tulsa, Oklahoma. I 
hope that you will agree with me that medical research has been 
very helpful in my life.
    Dr. Ehrlich, my orthopaedic surgeon, performed surgery on 
my hips seven years ago. As a result of that surgery, I am able 
to stand while wearing braces and walk. At school, I walk from 
class to class. Driller, my service dog, carries my books, 
picks up my pencils and helps me with my crutches. Even though 
Driller was trained to pull my wheelchair, I do not need his 
help.
    I am living an exciting life. Last year, I was one of 10 
finalists in a national essay contest. I received a trip to 
Washington, D.C. with my family. This year, I placed third in 
our school spelling bee. I particularly enjoy science, in 
school, and have been conducting independent study in 
chemistry.
    I think orthopaedic research is important because it has 
allowed me to do many things I would not have otherwise been 
able to even try.
    I appreciate the opportunity to ask you to full fund 
orthopaedic research.
    [Applause.]
    [The prepared statement of Michael Ehrlich, M.D., follows:]

[Pages 23 - 29--The official Committee record contains additional material here.]


    Mr. Miller. Taylor, thank you very much for coming to 
Washington again. I think you should be very proud to have 
parents that are so supportive of you. Dr. Ehrlich, thank you 
very much for the very fine work. Certainly, we are very 
supportive of orthopaedic research.
                              ----------                              

                                           Tuesday, April 15, 1997.

                                WITNESS

RICHARD J. O'REILLY, M.D., AMERICAN ASSOCIATION FOR CANCER RESEARCH
    Mr. Miller. Next, we will have Dr. Richard O'Reilly.
    Dr. O'Reilly. Good morning, Mr. Chairman.
    I have to say, I am a pediatrician, and that is called a 
very hard act to follow.
    I am Richard O'Reilly. I am Chairman of the Department of 
Pediatrics and Chief of the Marrow Transplantation Program at 
Memorial Sloan-Kettering Cancer Center. I feel privileged to 
appear before you today to present testimony on behalf of the 
American Association for Cancer Research, a professional 
society consisting of over 13,000 scientists and physicians who 
conduct laboratory, clinical and translational research into 
cancer.
    I would like to take a moment to thank this committee, in 
particular, for its extraordinary support and leadership on 
behalf of the National Institutes of Health and particularly 
the National Cancer Institute. The AACR is fully aware of the 
restrictive fiscal environment with which Congress is faced. We 
are most appreciative of the fact that you have really made 
this effort a high priority.
    I have made written remarks. I feel that at this time, I 
would like to just make a few short ones.
    Before I start, I want to dramatize the problem 
specifically in cancer by asking each of you and each of the 
members of the group here to look to right and left. Then look 
straight ahead, recognize that one out of three of you is going 
to develop cancer. That is the problem. Each year, 1.4 million 
Americans are diagnosed with cancer, and 560,000 Americans die 
of cancer every year.
    When you think of the time frame of World War II from 1941 
to 1945, 291,000 Americans died in that conflict. Yet, we 
permit 560,000 Americans each year to die of cancer.
    Cancer is an intolerable national tragedy that can no 
longer be accepted. Even more tragic to my mind, there is a 
pervasive attitude that somehow nothing can be done. The exact 
converse is true.
    The statistics are not ones that I feel are tenable by a 
Congress of this type or a Nation of this type. The cost of 
care for patients with cancer exceeds $104 billion annually. 
Yet, the research budget proposed for the National Cancer 
Institute is $2.4 billion.
    There is not a company nor a general going into a war, who 
would tolerate it.
    Another irony, we paid $61 billion to support the Gulf War. 
Much of that money was used, appropriately, to see to it that 
Americans lost in that conflict would be at a minimum. We aree 
talking about somewhere in the neighborhood of 10,000 lives.
    Yet we are devoting $2.4 billion and that is it, and we are 
allowing 560,000 Americans to die every year of this disease. 
That is one person every 57 seconds.
    That is just an extraordinary national tragedy. Twenty-five 
years ago, this Congress and this Nation committed to a war on 
cancer. They established cancer centers, research program, and 
national cooperative groups, which were designed specifically 
to try to develop a better approach for the treatment of 
cancer.
    The progress there, I think, is really quite striking, 
oftentimes not recognized. The fact of the matter is that in 
1971, when I was a House Officer, if a child had leukemia, that 
child was doomed to die. Less than 20 percent of those kids 
lived five years.
    I was told, by my peers, that it was unethical to consider 
or to present the idea to parents that a child could be cured 
of cancer. Yet today, 80 percent of children with leukemia will 
be cured with modern chemotherapy.
    We have several of the cancers, among kids, that are the 
same. In the last 10 years alone, we have increased the cure 
rates anywhere between 10 and 40 percent.
    Among adult cancers like testicular cancer, Hodgkin 
Disease, certain forms of lymphoma, even breast cancer, 
singular advances are now being made in treatment. And as a 
result of that, for the first time in the Nation's history 
between 1991 and 1995, there has been a tangible reduction in 
the mortality rate due to cancer of 3 percent, this at a time 
when the overall incidence of cancer is increasing because of 
the obvious fact that our population is getting older.
    We have also made dramatic advances, both in therapy and in 
our knowledge of cancer. There are several new drugs. You can 
take Taxol, and any of the cytokines that we use to support the 
blood system. You can talk about antibodies that will 
specifically target tumors. All of these have been introduced 
now and are being evaluated in clinical trials.
    We have made dramatic advances in our understanding of the 
genetics of cancer. In recent discoveries of breast cancer 1 
and breast cancer 2, the different genes contribute to familial 
colon cancer. These are now recognized, and are clearly an area 
where we can make dramatic progress in the future.
    We have also begun to achieve a new understanding of how 
the host can resist these kinds of tumors, both at the cellular 
level and within the immune system. Over the last two years, 
for example, we have now come to recognize in my own field of 
marrow transplantation that doses as few as 1,000 immune cells 
can, in fact, induce durable remissions of diseases like 
chronic myelogenous leukemia, or EBB lymphomas, diseases which 
kill a large proportion of patients with AIDS today.
    So if we look back on those last 25 years, there have been 
dramatic improvements in terms of care, and there havebeen 
dramatic discoveries in terms of the nature of cancer and what it is 
all about. I also want to stress the fact that this is a two way 
street. It is not just going from the laboratory to the patient. But it 
is from the patient to the laboratory as well. People oftentimes don't 
recognize, in the budget, the contributions being made by clinical 
scientists who at the bedside observe disease. Yet when we think about 
monoclonal antibodies, we tend to forget that in fact it was a clinical 
scientist who recognized myeloma to be monoclonal disorder. We forget 
about the Chinese, who worked with Vitamin A derivatives that have 
actually opened up a whole new field of therapy in terms of 
promyelocytic leukemia, with all trans-retionic acid.
    We also forget about the fact that while we have made these 
dramatic advances in the molecular genetics of cancer, there 
are all those clinicians who very clearly worked hard to 
basically define the genetics of susceptibility and pedigrees 
of high risk. As a result of that that combination of talent, 
we have had this extraordinary explosion in what we now know as 
the genetics of cancer.
    While I deal with cancer in kids, one vignette, I want to 
be sure that everybody recognizes that the price of cancer 
therapy now is high, not just in dollar, but also in the 
intensity of the therapy. When I give a transplant to an adult, 
or a child, and I give a transplant from a normal individual, 
to get rid of that patient's leukemia, I currently, on a daily 
basis, give about 1,500 rads of total body radiation. To put 
that in perspective, that is equivalent to standing 600 yards 
from the epicenter of the bomb at Hiroshima. That is the dose I 
am giving.
    Despite that, there are leukemias that come back; and 
despite the chemotherapy that I give, they will come back in 
many instances.
    We are right now using tanks for mosquitos. If we do not 
begin to develop better targeted therapies, therapies that are 
specific to the cancer and not to the general cells in the 
body, we are really doomed. This legacy of extraordinary 
advances over the last 10 years is going to be a very mixed 
blessing.
    What we in the AACR are doing is proposing something that 
may not be quite so popular. It is not so easy. What we say is 
that the cancer budget has to be doubled by the year 2000. Why 
doubled? The reason for doubling is really threefold. First of 
all, at the present time, we are in fact funding no more than 
22 percent of the approved grants that are submitted at the 
present time. In fact, it really works out to be about 15 
percent, because a large proportion of the grants that we are 
now submitting are resubmitted because of the fact that the 
first time or second time they have not been even close to 
approval in terms of funding.
    The second aspect of it is that we do not have the 
infrastructure necessary to conduct the type of clinical and 
translational research that is so essential, at the present 
time, to take these advances in the laboratory and bring them 
to the patient. We for example, let me give you an example 
again in pediatrics. Pediatrics was taken on as a national 
priority in the 1970s. All kids with cancer are treated by 
pediatric oncologists usually based in academic centers. As a 
result of that, in 1996, of the 10,000 kids expected to develop 
cancer, 9,500 have been treated on clinical protocols, 
registered in cooperative trials.
    Now, because of this, and because of the step-wise approach 
that we have used to treatment in cancer, we have made dramatic 
improvements in the care of kids with cancer.
    Now, let us contrast that with the adults. At the present 
time, no more than 6 percent of the adults with cancer are 
registered on a trial. More than 1 percent are actually treated 
on a protocol. That is a fact.
    Now, if that is the case, do we really think that we have a 
national effort towards the eradication of cancer? This is with 
treatment. What about if we now have all these genetic markers? 
How will we begin to apply them if we are only applying them to 
at most 1 percent of the people who actually are affected by 
the disease?
    The other problem is that, in real terms, we need better 
trained people. The fact is that over the last 25 years, not 
only have we had an explosion in our knowledge, but an 
explosion in our techniques for conducting both basic and 
clinical research. Right now, we are no longer in the 
circumstance where clinical research is haphazard. It is a 
rigorous scientific discipline for which we need trainees.
    For these three reasons alone, one, we have too many good 
ideas that are put in the trash can right now; two, we have too 
few patients with cancer for whom this kind of modern therapy 
is available; and three, because we have too few who are 
trained to actually carry out the mission.
    We desperately need this doubling.
    In summary, we believe the Nation's efforts in cancer 
research are in grave crisis. We are deeply concerned that the 
support requested in the proposed budget is grossly inadequate. 
At this time of national need and exceptional opportunity, 
research into cancer must not be viewed as a contracting 
scientific enterprise. The opposite is called for.
    We, as scientists and clinicians, have often sat back and 
remained silent when activism was required. The reality of 
cancer, however, is just too monstrous. It is too ghastly a 
reaper of human life, both in its bloom and in its old age. 
This crisis in national will must be met, and we ask you to 
help us to get there.
    Thank you.
    [The prepared statement of Richard O'Reilly, M.D., 
follows:]

[Pages 34 - 44--The official Committee record contains additional material here.]


    Mr. Miller. Thank you, Dr. O'Reilly.
    I have always admired pediatric oncology as one of the 
toughest areas to be in, I have always thought. It is an area 
that, in some ways, we are preaching to the choir. 
Congresswoman Pelosi and myself and other members of this 
committee fully support you. I think what everybody in this 
room needs to do is, we need to get more and more public 
support.
    People do not realize, I mean, all around the country, and 
when I talk about it back in my home in Florida, what great 
work the NIH is doing, and it needs more. It is one of the 
highest priorities we have. But how much can we get.
    We are going to be pushing as far as we can. I commend you 
and your colleagues, especially in pediatric oncology. It is a 
very tough area.
    Thank you very much for your very good testimony. You are 
also, not only did you have Taylor Breedlove before you, you 
have Dr. Michael DeBakey following you.

                              ----------                              

                                           Tuesday, April 15, 1997.

                               WITNESSES

MICHAEL DEBAKEY, M.D., FRIENDS OF THE NATIONAL LIBRARY OF MEDICINE
DONALD LINDBERG

    Mr. Miller. So we are very proud to have a very 
distinguished gentleman, Dr. Michael DeBakey. Welcome, Dr. 
DeBakey. It is an honor to have you with us today.
    Dr. DeBakey. Thank you, Mr. Chairman.
    I am delighted to have this opportunity to present my views 
to the committee. I want to thank you for the opportunity. I 
have a prepared statement, which I would like to submit for the 
record, if I may.
    I am testifying on my own behalf and that of the Friends of 
the National Library of Medicine. The National Institutes of 
Health is undoubtedly one of the really stunning success 
stories in the history of U.S. science, indeed, in the history 
of world science. My association with the institution goes back 
a long ways. I have been associated with it for over four 
decades, both as an advisor, and a supporter and a grantee.
    I am thoroughly familiar with the aspects of the National 
Institutes of Health. I am also very grateful for the fact that 
Congress has provided great support to the National Institutes 
of Health. I think this is a very important recognition, 
certainly one that I think the people in the country should 
recognize.
    I think that the people in the country should also 
appreciate the fact that from a taxpayer's standpoint, the 
results of the operation of the National Institutes of Health 
is certainly, to me, one of the most valuable processes that we 
have in terms of what we are paying for, as taxpayers, for the 
Government. The stream of knowledge that comes out of the 
National Institutes of Health activities has really made 
American medicine the premier medical endeavor in the world 
today.
    When I was a medical student, it was generally regarded as 
necessary to get further education in medicine to go abroad. We 
now have people coming here for that purpose. We do not have to 
go abroad.
    In a previous statement that I made about the proposed 
budget for the funding of the National Institutes of Health, I 
said very clearly that I thought the 2.6 percent increase is 
simply inadequate for the purpose of continuing the necessary 
function in terms of improving our knowledge of the health and 
the need to meet the opportunities that are available in a 
scientific endeavor.
    The introduction of the National Library of Medicine into 
the NIH campus, which you may recall occurred in the 1960s, was 
a truly logical move. I was associated with that development 
personally, because I was a member of the medical task force of 
the Hoover Commission that made the recommendation to establish 
the National Library of Medicine. So I have been associated 
with it for a long time.
    I was on the early board of regents of the Library of 
Medicine. I have recently been on it for a second time. I am 
thoroughly familiar with the National Library of Medicine and 
its activities. I can assure you that this, too, has become a 
most important and valued source of information in the world. 
The National Library of Medicine is looked upon and is used all 
over the world as a source of information.
    It really actually serves a very important and essential 
role in American medicine today. It is also, I think, very 
fortunate to have as its Director, Dr. Donald Lindberg, who is 
not only highly qualified medically, but also is considered an 
undisputed leader in the application of communications 
technology and health care. This is a growing, and rapidly 
growing endeavor, which I think is going to actually change the 
whole face of medical technology and medical information.
    The most recent example of this is a series of contracts 
that the Library has awarded for the development of evaluation 
of telemedicine and preservation of privacy in the medical 
records. It is of growing importance.
    In a related matter, I believe it is absolutely essential 
that the Library be included in the so-called Next Generation 
Internet program. I think there is no aspect of today's society 
that is more worthy of reaping the benefits of the expanding 
national information infrastructure than medical research and 
health care today.
    I was interested just this morning in hearing, I think on 
C-SPAN, a presentation about the Internet and the World Wide 
Web. I was interested in the fact that 37 percent of all the 
inquiries on the Internet are concerned with health care. So it 
does reflect the significance of health care and its importance 
to the public, and to the people.
    It is a national information infrastructure, especially the 
Internet and the World Wide Web, that now provide the Library 
with its greatest opportunity. Citizens are increasingly 
turning to the Web as a source of information. And the public 
has never been so well informed on matters of health.
    I think the American public particularly is perhaps the 
best informed public in terms of health matters. They are very 
much interested in health matters. And this is a great 
opportunity to provide them with the health information that 
they're looking for.
    The opportunity I see is two-fold. First, the Library could 
provide access to its vast MEDLINE data base of references and 
abstracts to all U.S. citizens without charge on the World Wide 
Web. Not only does the technology make this feasible, but a new 
National Library of Medicine program is beginning to make it 
possible for users to retrieve the full text of some articles 
in MEDLINE.
    It has been said that a well informed and educated public 
is a bedrock of democracy. I think the same can be said about 
the importance of health to the public in terms of a healthy 
citizenry. The National Library of Medicine is to be commended 
for working closely with the major private sector medical 
publishers on this program.
    Second, the Library could broaden the scope of its data 
bases to include authoritative health information intended to 
the lay audiences.
    These moves, coupled with the Library's vigorous outreach 
program, would dramatically increase the utility of the world's 
largest data base of medical information. I believe that the 
health care professionals and consumers should be able to tap 
into the most recent medical information, for that is a public 
service, not a commodity.
    Even with all our modern advances in health care, I still 
consider good information to be the best medicine.
    Mr. Chairman, I realize you must consider many worthy 
competing claims for the resources. Nevertheless, I would 
suggest that a 9 to 10 percent increase in the National Library 
of Medicine over the fiscal year 1997 to support a health 
component in the Next Generation Internet initiative and to 
improve access to health information would be in the Nation's 
best interest.
    Thank you for allowing me to appear before you.
    [The prepared statement of Michael DeBakey follows:]

[Pages 48 - 56--The official Committee record contains additional material here.]


    Mr. Miller. Dr. DeBakey, thank you very much for taking 
your time to come before this committee. You are obviously a 
very respected person, and it is really a pleasure and honor to 
have you here today. So thank you very much.
    I know you have with you Dr. Lindberg over here from the 
National Library of Medicine. I have visited the National 
Library of Medicine, as have most members of this committee. It 
is an impressive facility. Yesterday, this committee was in 
Atlanta, to visit CDC mainly, but we also stopped by Morehouse 
School of Medicine, a relatively new minority medical school, 
and visited their library. For a new medical school that can 
get up to speed so quickly, because of the technology that is 
available to them is impressive. It was also interesting, which 
made me think, a few months ago when I was in Venice, Florida, 
in my district, I visited a community hospital in town. It was 
interesting, the availability of information for patients 
there. This is not a research hospital.
    They have available for anyone that wants to find out 
information via the Library of Medicine. So it was very 
impressive. That is one of the many components of NIH that we 
should be very, very proud of.
    Dr. DeBakey. Thank you.
    Mr. Miller. Ms. Pelosi?
    Ms. Pelosi. I want to join you in welcoming Dr. DeBakey 
here today, and thank you for all of your leadership which has 
made us all so proud in our country.
    As a co-chair of the Biomedical Research Caucus, which 
strives to educate members and their staffs to the need for 
this increased funding, I appreciate your testimony and that of 
so many others who have testified and will testify for support 
for increased funding at NIH, and particularly in your case, 
the Library of Medicine.
    I do also, though, want to point out that as others have, 
this is in the interest of budget, of balancing and deficit 
reduction, because of the money saved by the increased 
research, and lives improved, quality of life, etc. The only 
problem is that it is a sum zero game in here, and to the 
extent that I agree with you that the increase proposed for 
this year does not even keep up with biomedical inflation, that 
we have to do more, it has to come from some place. Those who 
follow this committee are tired, I am sure, of hearing me say, 
it is lamb eat lamb in here. Because every place you go to look 
to take money from, if you want to increase one function, you 
have to take it say, from education.
    So while it is great for us when such distinguished 
scientists and physicians come before us to testify for the 
increase, I hope that you will include in your lobbying effort 
increased funding for all that contributes to biomedical 
research, education, early childhood education, so that we have 
our farm team coming up to produce the scientists we need at 
the other end, and a healthy and well educated country.
    I agree with you, I think it is our best dollar spent, what 
we spend at NIH. And it has the power to cure. And we should 
provide the resources where the scientific opportunity exists.
    But please help us also with other functions, because this 
is the 800 pound gorilla. It sits there and we all want to, it 
is not controversial, we all want to increase it. But at the 
expense of education or early childhood education, Head Start, 
etc., it is a challenge to us. So please help us get a bigger 
figure.
    Because in the end, as you have said, all of you, it does 
save money in addition, of course, to the important work of 
improving, keeping our country healthy and improving the lives 
of people.
    Dr. DeBakey. Thank you. I will do my best to do that.
    Ms. Pelosi. Thank you.
    Mr. Miller. Thank you very much, Dr. DeBakey.

                              ----------                              

                                           Tuesday, April 15, 1997.

                                WITNESS

DOUGLAS L. WOOD, D.O., AMERICAN ASSOCIATION OF COLLEGES OF OSTEOPATHIC 
    MEDICINE

    Mr. Miller. Dr. Douglas Wood. Welcome, Dr. Wood.
    Dr. Wood. Thank you, Mr. Chairman.
    I have the privilege of following the esteemed Dr. DeBakey 
and the stellar Taylor.
    Mr. Chairman and members of the subcommittee, I am Dr. 
Douglas Wood, President of the American Association of Colleges 
of Osteopathic Medicine, which I will refer to as AACOM.
    I am pleased to present the views of our 17 colleges for 
and on fiscal year 1998 funding for health professions 
education assistance programs under Title VII of the Public 
Health Service Act. First, let me say that AACOM greatly 
appreciates the past efforts of the subcommittee to maintain a 
commitment to health professions education. The subcommittee's 
vision under the leadership of the Chairman will enable health 
professions schools in general, and colleges of osteopathic 
medicine in particular, to meet the physician and work force 
needs dictated by a rapidly changing health care delivery 
system.
    At the same time, we recognize the responsibility of the 
subcommittee to examine all programs in light of their cost 
effectiveness in meeting the health care needs of all 
Americans. We believe that colleges of osteopathic medicine 
measure particularly well under that scrutiny.
    By training and by tradition, osteopathic 
physicianspractice hands-on, holistic medicine, and value the highly 
close and interactive physician-patient relationship that is 
characteristic of our profession. This philosophy has driven a unique 
educational model in our schools. AACOM is especially proud that the 
model of osteopathic medical education is entirely consistent with the 
Federal objectives of rectifying physician geographic maldistribution 
in the United States and increasing access to primary care services.
    It is important to note that this model has not been 
developed recently in response to Federal funding requirements; 
rather, it has been at the core of osteopathic medical 
education for over 100 years. The principal vehicle for 
addressing the specialty and geographic maldistribution of 
physicians has been through primary care education and 
training. AACOM member schools have a long history of training 
primary care physicians to work in America's smaller 
communities, rural areas, and under-served urban areas.
    The health professions assistance programs under Title VII 
of the Public Health Service Act have been valuable in our 
efforts to continue to ensure this commitment. These programs 
are the most visible Federal commitment to the important task 
of educating primary care physicians. The Federal Government 
and medical educators need to expand their collaborative 
efforts to build a strong primary care physician population. 
Numerous programs are especially important to enhancing 
osteopathic medical schools' ability to train the highest 
quality physicians. Examples of these programs are support for 
general internal medicine residencies, general pediatrics 
residencies, family medicine training, preventive medicine 
residencies, area health education centers, and several other 
examples.
    Although time does not allow, Mr. Chairman, in our written 
statement we have cited a number of examples from Florida, 
Michigan, and Texas where Title VII funds have been especially 
helpful in establishing innovative programs. Title VII also 
authorizes student assistance programs that are especially 
important to osteopathic medical schools.
    This subcommittee must be concerned with minimizing the 
debt load of our graduates if they in turn can be expected to 
hold down medical costs, practice in primary care specialties, 
and locate in under-served areas. In addition, exceptional 
financial need scholarships, financial aid for disadvantaged 
health professions student scholarships, and scholarships for 
disadvantaged students are all programs that must be maintained 
if we are to ensure access to medical education by under-
represented groups.
    Accordingly, Mr. Chairman, AACOM recommends that the fiscal 
year 1998 funding level for Title VII be $234 million. This 
figure is a modest 3 percent increase over the amount Congress 
appropriate for fiscal year 1997.
    Mr. Chairman, although we generally support the actions of 
the subcommittee over the past two years, we do believe that 
one item needs to be revisited. Effective October 1, 1995, a 
phase-out of the Health Education Assistance Loan program, 
HEAL, began. Since that date, no HEAL loans have been available 
to first-time borrowers. This action has created special 
hardships for osteopathic medical students, who rely more 
heavily on HEAL than any other source of financial assistance.
    Elimination of HEAL could have a significant negative 
impact on osteopathic medical education at both ends of the 
pipeline. Students who are otherwise qualified and who are 
considering application to medical schools might find this 
opportunity closed because of their ineligibility for other 
loans. On the other hand, those students who are eligible for 
non-HEAL loans will be faced with an increased debt load. This 
would serve as a disincentive, then, to practicing primary 
care, which provides smaller salaries than many of the 
specialties, and/or practicing in rural settings, which has 
little financial inducement.
    In addition, revised figures on the cost of the HEAL 
program indicate that it is extraordinarily cost effective to 
both students and taxpayers. Based on this information and the 
fact that osteopathic medical students have had the lowest 
default rate among all health professional students who have 
HEAL loans, that rate being 1.5 percent as of September 30, 
1996, we respectfully request that the subcommittee restore 
full funding for the HEAL program.
    Again, let me emphasize the importance of Title VII support 
for colleges of osteopathic medicine. As noted in the most 
recent annual report of the Physician Payment Review 
Commission, osteopathic medical schools receive comparatively 
smaller revenues from research contracts or physician practice 
plans. Title VII support for our institutions and students is 
thus essential to our viability.
    Mr. Chairman, in conclusion let me say that the efforts of 
the subcommittee in support of health professions education 
assistance programs have been most encouraging. We look forward 
to working with you. I thank you and I would be willing to 
answer any questions.
    [The prepared statement of Douglas L. Wood follows:]

[Pages 61 - 68--The official Committee record contains additional material here.]


    Mr. Miller. Thank you, Dr. Wood. As you have heard so far, 
we always have these tough choices to allocate limited 
resources. But I appreciate that. You made me think. I see you 
are from Michigan. As a kid growing up in Michigan, my mother 
used to be a D.O.N. at an osteopathic hospital, I think it was 
Garden City. It is probably not even there any more.
    Dr. Wood. It is still there.
    Mr. Miller. Is it still there? This was back in the early 
1950s, so it was a long time ago. I appreciate your testimony. 
Thank you very much.
    And I also want to thank you, and the Association, because 
a new requirement for testifying before committees is to submit 
not only your curriculum vitae but also a statement of Federal 
grant and contract funds. And the Association did provide that, 
and we appreciate it. I noticed some other groups have not, but 
that is a new requirement this year when you are testifying 
before Congress. So those who have not, if you have any 
questions, certainly ask the committee staff and they can help 
provide that information.
    Thank you for providing that.

                              ----------                              

                                           Tuesday, April 15, 1997.

                                WITNESS

CHARLES L. CALKINS, FLEET RESERVE ASSOCIATION

    Mr. Miller. Next, we will have Mr. Charles Calkins, 
National Executive Secretary of the Fleet Reserve Association. 
Mr. Calkins, welcome.
    Mr. Calkins. Thank you, Mr. Chairman.
    Before I start, I would like to add a little personal 
comment. It is kind of surprising how things go around. Our 
first speaker, Dr. Berns, graduated from Cornell. I grew up in 
Ithaca, and of course I found out he graduated from Cornell 
Medicine, New York. Surprisingly enough, before I came down 
here, I lived in Providence for a while, worked there, my 
doctor was a graduate of Cornell. Then Dr. O'Reilly from 
Providence, so a lot of things just fall together all at once.
    My comments today, and to your distinguished subcommittee, 
reflect the shortfalls in the President's request for Impact 
Aid funds. I think that all falls together, as I was starting 
to allude to, in where do we start our educational process.
    Again, this coming fiscal year, funds for Category B 
children of military personnel have not been requested, despite 
the fact that these children need to be educated under the same 
curriculum offered to A students. The Administration may be 
under a misconception that Category B children do not have any 
impact on the budgets of school districts in which they are 
enrolled.
    It may have something to do with the idea that military 
families living in a civilian community pay a fair share of 
local taxes, and that there is no need for the Federal 
Government to provide extra funds for the children's education. 
However, military personnel are protected by law from paying 
local income and personal property taxes, and many of them live 
in the civilian community because they are involuntarily 
ordered to a military base where there is not sufficient or 
adequate housing on board.
    Some live off the base only for as long as it takes to be 
assigned military housing on the installation. Why should their 
children be singled out as not being accountable for Impact Aid 
is a mystery to the active duty members of our association. And 
can you feel how the children can feel in this same regard.
    For a decade and a half, one Administration after another 
has chosen Impact Aid funds as a means to cut the Nation's 
educational budget. Particularly vulnerable is the funding for 
the schools educating the children of members of uniformed 
services. In southern California, for example, some school 
officials fed up with reduced Impact Aid funds threatened to 
close their schools to military sponsored students. Some school 
districts have tried this approach but have been forced by 
court orders to continue educating these children.
    This is not fair to the school districts bearing the impact 
of military sponsored children and having to rely on a 
restricted budget to do so. More unfair is the harm it does to 
all children enrolled in the school, whether civilian or 
military sponsored.
    As I noted in my prepared statement, Mr. Chairman, members 
of the armed forces are going through demanding personnel and 
operational tempos, greater than at any time other than in 
hostile environments. The services have downsized nearly a 
third of their manpower over the past six years, with more 
reductions projected for fiscal year 1998. This, coupled with 
increased operations, tighter budgets, suspended maintenance 
and abuse or over-use of equipment and weapons systems, less 
training time and lack of qualified personnel and technical 
specialties causes longer separations from families and a 
strain on morale and force readiness.
    The Nation should not further demoralize our service 
members, their spouses and young children by denying adequate 
funds to the impacted school districts having the 
responsibility of educating their children. Mr. Chairman and 
members of this distinguished subcommittee, on behalf of the 
500,000 active duty Navy, Marine Corps and Coast Guard 
personnel, particularly those with elementary and secondary 
school children attending impacted school districts, the Fleet 
Reserve Association urges you to appropriate additional Impact 
Aid funds above the President's request to benefit military 
sponsored students.
    Thank, and I would be honored to entertain any questions 
from the Chairman or your colleagues.
    [The prepared statement by Charles Calkins follows:]

[Pages 71 - 78--The official Committee record contains additional material here.]


    Mr. Miller. Thank you for being with us today. And your 
presentation, as Congresswoman Pelosi was saying, we have a lot 
of tough choices here between research for cancer and AIDS and 
Library of Medicine and Impact Aid. And I am sorry our 
Chairman, who is very familiar with the issue of Impact Aid, is 
not here today. But thank you very much for your testimony. We 
appreciate your being here today.
    Mr. Calkins. Thank you.

                              ----------                              

                                           Tuesday, April 15, 1997.

                                WITNESS

EDWARD HAYES, AMERICAN CHEMICAL SOCIETY

    Mr. Miller. Next, we have Dr. Edward Hayes, who is with the 
American Chemical Society Committee on Public Affairs, and Vice 
President for Research at Ohio State University. Welcome, Dr. 
Hayes.
    Mr. Hayes. Thank you. I am Ed Hayes, as you just mentioned. 
I have a prepared statement for the record.
    I am here representing Paul Anderson, who is President of 
the ACS, who is on the west coast at the Society's 213th 
National Meeting.
    The goal I have today is to give you a chemist's 
perspective on the value of NIH. As a strategic investment, 
chemistry is very important in providing an understanding of 
the basis for the cure and prevention of disease. A chemist's 
world is the world of atoms and molecules. Chemists are proud 
of the contributions that they have made to understanding life 
processes.
    Consider for just a moment the headlines from a recent 
issue of the Society publication, Chemical and Engineering 
News, one article entitled ``Catalytic Antibodies,'' reports a 
new technique for identifying catalytic antibodies that 
accelerate specific biochemical reactions. In a second article, 
entitled ``Keeping Cancer in Check with p53,'' we read how 
researchers have been working to unravel how this protein 
functions and to devise drugs to boost its usefulness in 
controlling tumors.
    Behind each of these stories, you see the hand of NIH. And 
you get a sense of the extent to which molecular science and 
chemists are providing the basis for new discoveries.
    Behind these remarkable advances stands years of research 
into fundamental processes of cells, of proteins, and of 
complex biological systems. Within NIH, the National Institutes 
of General Medicine plays a very significant role through its 
funding for the enabling research and training for the 
biomedical research community, and research that underpins the 
advances and discoveries of the other NIH institutes.
    Basic research, at the molecular level, has permitted 
scientists to overcome formidable hurdles in the past. Today, 
chemists are optimistic that their contributions will be even 
more impressive in the future.
    Another key element, behind NIH's success, lies in the 
instrumentation support mechanisms. Modern instrumentation is 
central to the rate of progress. It is also important to watch 
the dance of the molecules.
    Though often expensive, modern instrumentation enables 
researchers to observe directly the fundamental chemical and 
biochemical processes involved in life, and to gain much-needed 
insight into the workings of the human system. Until 1992, a 
primary source of NIH's ability to meet instrumentation needs 
of biomedical researchers was the National Center for Research 
Resources program of shared instrumentation grants, 
affectionately called SIG.
    However, the incredible reduction in this program's budget 
by 75 percent in 1992 contributed to a significant drop in 
total NIH funding for research equipment. In constant dollars, 
the drop overall has been 20 percent. Today, the entire budget 
of the SIG program is about $21 million. This level of funding 
is not sufficient to meet the need for major instrumentation 
such as high-field NMR and advanced crystallographic detectors. 
The Society encourages you to give this vital program the 
strongest support possible.
    Finally, I want to call your attention to the importance of 
funding that NIH provides to students. The single most 
important element of any research program, regardless of 
discipline, is the presence of well trained, talented and 
dedicated individuals to conduct the investigation. Because of 
this reality, our Nation's ability to equip young scientists 
with the necessary knowledge and insight will determine whether 
they can continue the tremendous advances of the past decade.
    Training programs at NIH, through NIGMS in particular, 
develop the broad-based skills demanded by modern biomedical 
and pharmaceutical research. Skilled researchers are needed to 
fuel the rapidly expanding biotechnology industry and the 
pharmaceutical and diagnostic sectors. Well trained researchers 
not only increase productivity for these sectors but also help 
maintain their world leadership in an extremely competitive 
market.
    In turn, these industries provide new jobs and products 
that improve the lives of many Americans.
    The American Chemical Society recognizes that the financial 
resources available from the Federal Government are limited. 
Yet there is a real need to invest now so that we can have a 
healthy America tomorrow. The Society's recommendation that NIH 
be funded at a level about 7 percent above fiscal year 1997 
appropriation level reflects the balance between investing in a 
healthier America and deferring high priority research projects 
while curtailing Federal spending.
    Thank you.
    [The prepared statement by Edward Hayes follows:]

[Pages 81 - 93--The official Committee record contains additional material here.]


    Mr. Miller. Thank you very much, Dr. Hayes.
    This committee is very supportive of basic research in 
particular, and we are going to do everything we can to get the 
maximum, with the limited resources we have to work with. Thank 
you very much for coming to testify.
    Mr. Hayes. Thank you. The Society very much appreciates the 
support of this committee.
                              ----------                              

                                           Tuesday, April 15, 1997.

                                WITNESS

WILLIAM L. LOWE, M.D., AMERICAN FEDERATION FOR MEDICAL RESEARCH

    Mr. Miller. Next we will have Dr. William Lowe, Associate 
Professor of Medicine at Northwestern University Medical 
School.
    Dr. Lowe. Thank you. Good morning, Mr. Miller. Thank you 
for giving the American Federation for Medical Research the 
opportunity to testify here today about the challenges 
confronting our Nation's clinical research effort.
    A national organization of 7,000 physician-scientists. The 
AFMR is most grateful for this subcommittee's strong support 
for the National Institutes of Health. We also applaud your 
acceptance of the NIH request for additional funds to construct 
a new clinical research center on the NIH campus.
    However, we are concerned that increased appropriations 
have not been provided for much needed initiatives to 
strengthen clinical research in the extramural community. The 
AFMR urges this subcommittee to move forward this year with 
additional NIH funding to revitalize our Nation's clinical 
research effort.
    The AFMR is particularly concerned about limited funding 
available for the earliest stage of clinical research through 
which a basic science discovery is translated to the benefit of 
patients. For this research, which may have little or no 
commercial product potential to attract industry dollars, NIH 
funding is critically important. Examples of such research 
include research on nutrition, prevention, transplantation or 
behavioral interventions.
    The difficulties confronting clinical researchers and their 
patients have received much attention, but unfortunately, 
little action over recent decades. Specific challenges to 
clinical research include the following:
    First, average tuition debt of over $63,000 makes a 
research fellowship paying $28,000 to $30,000 a year a 
financial impossibility. Second, trained physician 
investigators are abandoning careers in research. As reported 
by the AMA, the number of physicians reporting research as a 
major professional activity has fallen dramatically.
    In 1970, physicians made up 43 percent of all principal 
investigators on NIH funded grants. By 1987, this had dropped 
to 30 percent.
    Third, as documented by a special outside committee of the 
Division of Research Grants, there have been problems with NIH 
peer review of clinically oriented research grant proposals. A 
fourth problem confronting clinical research is the severe 
financial pressure on academic medical centers, which has 
weakened or eliminated their ability to subsidize clinical 
research internally.
    These problems have forced researchers and their patients 
to seek safe haven from health care competition in the general 
clinical research centers, which are underfunded for the task. 
In fact, to our distress, the fiscal year 1998 President's 
request for the GCRCs would hold them to a sub-inflationary 
increase of less than 1 percent, an effective programmatic cut.
    The AFMR believes that this subcommittee must take action 
to provide additional funding for extramural clinical research, 
just as it has wisely invested in a new clinical research 
center on the NIH campus. First, the subcommittee should take 
steps to increase substantially funding for NIH sponsored 
general clinical research centers across the country. Funding 
for the GCRCs has not kept pace with NIH wide budget growth in 
recent years.
    Accordingly, for fiscal year 1998, the AFMR recommends an 
increase of $20.5 million, or 17 percent for the GCRCs. My 
written statement details how these additional funds might be 
allocated.
    Second, we recommend that the subcommittee provide an 
additional $59.5 million, a mere half of a percent of the NIH 
budget, to fund the initiatives proposed in the clinical 
research legislation sponsored by Representatives Lowey, 
Johnson, Hoyer, Pelosi, DeLauro, Leach and Morella.
    This would include $1 million to expand the existing NIH 
loan repayment program for intramural scientists to the 
extramural community; $3 million for the creation of a five-
year career development award for clinical researchers; $52.5 
million to establish an innovative medical science awards 
program; and $3 million to create a grant program for Masters 
and Ph.D. degree training in clinical investigation.
    We recognize and applaud this subcommittee's resistance to 
``disease of the month'' earmarking for the NIH budget. As you 
consider our proposal for specified additional funding for 
clinical research initiatives, please keep in mind that such 
funds would not be directed to particular diseases or 
investigators.
    Rather, these funds would go to peer-reviewed proposals to 
translate basic scientific discovery to the study of disease. 
These initiatives will advance the goals of the NIH as a whole, 
which will benefit all NIH institutes and centers, and boost 
existing NIH efforts focused on women's health, minority health 
and prevention.
    In closing, Mr. Miller, permit me to suggest that if this 
subcommittee does not fund NIH initiatives to address the 
clinical research crisis, we will continue to see a slowing of 
medical research discovery. If the subcommittee does not act in 
1997, by the year 2000 you will be directing NIH to implement a 
crash program to replenish the Nation's corps of clinical 
investigators only to be told that such an effort will take 10 
to 12 years.
    Please do not delay. Construction of the new clinical 
research center in Bethesda has begun. Please move forward, 
this year, with funding to rebuild the extramural clinical 
research capacity of the NIH.
    I would be happy to respond questions. Thank you.
    [The prepared statement by William Lowe to follows:]

[Pages 96 - 104--The official Committee record contains additional material here.]


    Mr. Miller. Thank you very much, Dr. Lowe.
    I think the more that you and your colleagues can do to 
help educate everyone in this country that NIH is not just 
located in Bethesda, Maryland, but its funding 85 percent of 
the money on average, goes to extramural research. A lot of 
people think medical research is done at medical schools. We 
need to make them aware, that the money flows from NIH, most of 
it, out to places like Northwestern and such.
    So there is strong support. The question is, we have a 
limited pie. So we will do everything we can.
    Thank you very much for your testimony.
    Dr. Lowe. Thank you.
                              ----------                              

                                           Tuesday, April 15, 1997.

                               WITNESSES

PRISCILLA CICCARIELLO, PRESIDENT
RUTH NORTON, COALITION FOR HERITABLE DISORDERS OF CONNECTIVE TISSUE

    Mr. Miller. We will have next the representatives of the 
Coalition for Heritable Disorders of Connective Tissue.
    Introduce yourselves again, I have a couple of different 
names in front of me.
    Ms. Ciccariello. My name is Priscilla Ciccariello, and I am 
President of the Coalition for Heritable Disorders of 
Connective Tissue, which includes seven member organizations, 
Pseudoxanthoma Elasticum, Marfan Syndrome, Osteogenesis 
Imperfecta, Ehlers-Danlos, and several others that I won't take 
time at this moment to reiterate.
    I want to say that it is an honor to follow Mr. Lowe, 
because we endorse everything that he is saying there, as well 
as Dr. DeBakey. He is the one who developed the Dacron tubing 
which enabled my two sons to live for 20 years plus, and many 
thousands of other people, both with Marfan Syndrome and other 
cardiovascular diseases. It is an honor to hear him and to be 
able to say hello to him.
    I want to say that I am doing this in memory of Rachel 
Goodman. Her father is here, and she died at three years of age 
from Marfan Syndrome, neo-natal Marfan Syndrome, but with 
wonderful care from Johns Hopkins.
    I want to introduce Ruth Norton, who is a member of the 
National Marfan Foundation, and her testimony, with her two 
sons.
    Mr. Miller. Ms. Norton.
    Ms. Norton. I am Ruth Norton, of Newtown, Connecticut. The 
price I paid to sit in this chair today was the life of my 
father, my sister, my brother and my 15 year old son. To be 
with you today meant to have been affected by Marfan Syndrome.
    In September of 1991, I learned about this killer. It was 
the first day of school for my three excited sons, and the bus 
was just minutes from arriving. Suddenly, my son Robert fell to 
the ground in convulsions and extreme pain. It took the 
hospital 28 hours to determine the problem, a four foot long 
spiral tear in his aorta.
    He was rushed by ambulance to Yale New Haven Hospital. As I 
rode with him, I watched the team pound on Robert's chest and 
yell to him to respond. After arriving, I was told the news, he 
was not expected to live through the night.
    How did this happen to my healthy, beautiful son? How would 
I tell him what was happening to his body? How would I tell his 
two brothers he was dying? How would I tell his dad when he 
arrived?
    I listened to the beeps from the ICU monitors tracking the 
little bit of life still there, as I contemplated this horrible 
situation. I sat next to Robert, stroking his hair, telling him 
how much I loved him, holding him, staring at him, grateful for 
the gentle sound of his breath.
    When they came to prepare him for surgery, I kissed him 
until my lips stung. He told me, ``I love you, Mom, very much, 
forever and ever, and don't you ever forget it.'' I still 
remember watching him go through those cold steel gray doors. 
That would be the last time we would see our son alive. I could 
still feel the sting on my lips.
    During that time, we began to learn about Marfan's. I was 
shocked and sick to find out that it is a heritable disease 
that came through me. It did not have a name then, but at the 
age of 13, I lost my father to Marfan's. Through skilled 
doctors and researchers and information from the National 
Marfan Foundation, our family was educated quickly and then 
tested. My other two sons do not have Marfan's, but of course, 
I do. As we informed extended family, we learned how difficult 
it is to find a place that can test for Marfan's and even then 
to find that the tests done are not always conclusive, but 
merely guidelines to watch.
    We learned that my sister, Jan, and my brother, Rich, were 
affected, along with some of their children. Aunts, uncles and 
cousins and their children were being checked and several 
diagnosed with Marfan's. In the past five years, my family has 
lost time and time again.
    My sister Jan and I decided we would go through this 
together since we were so much alike. It was nice having 
someone to talk to and share the terrifying feelings you get. 
We thought we had it all figured out, and surgery was the plan. 
But one year after losing my son, my sister Jan collapsed and 
died from a dissection of the aorta. My world was collapsing 
around me, and I was scared.
    But to the rescue came my brother Rich. He and I developed 
a deep bond that year. We decided that time was very precious, 
and we started spending a lot of time together, playing and 
laughing and learning to live again. He cherished my boys, and 
each time we flew out to be with him he would spoil them silly.
    Just three and a half months ago, I flew out to be with 
Rich again, but this time the reunion would be in the intensive 
care unit of UMed Hospital. It was as if some very cruel person 
had hit the replay button and I was to watch the same thing 
again. Rich had suffered a massive dissection of the aorta. I 
sat next to Rich, stroking his hair, telling him how much I 
loved him, holding him, staring at him, grateful for the gentle 
sound of his breath.
    This time, however, I was muttering that it was time for us 
to win this battle. I held him as he sobbed. I listened to him 
plead, please do not let me die, just do not let me die.
    Later that day, I held his wife as we together heard those 
all too familiar words, he is gone.
    That leaves me, with this horrible killer inside of me. My 
sons have been robbed of a happy, carefree childhood, as they 
continually become pall bearers, and as they live in constant 
fear of losing me, their mom. My husband is in agony over the 
reality of it all, and the possibility of losing his life's 
companion. My agony is the thought that another child will die 
from this.
    I brought my sons, Lee and Douglas, here with me today. 
Please let them know that through your help, others do not have 
to go through our experience. Please do not let them down.
    I have been forced to bury some of my dreams. Please help 
the research progress so that other dreams can come true.
    At this time, there is less than $1 million allocated for 
Marfan research. This is out of balance with the funding that 
is allocated to other genetic disorders. Marfan Syndrome is a 
life-threatening, debilitating disorder. Over 200,000 people 
are affected with Marfan's Syndrome and related disorders.
    There are two primary institutes that provide extramural 
research on Marfan's Syndrome. One is the National Institute of 
Arthritis and Musculoskeletal and Skin Diseases, and the other 
is the National Institute on Heart, Lung and Blood.
    We are recommending a 9 percent increase over the current 
fiscal year. Thank you, and I will be happy to answer any 
questions that you have.
    [The prepared statement by Priscilla Ciccariello follows:]

[Pages 108 - 116--The official Committee record contains additional material here.]


    Mr. Miller. You certainly have personalized the importance 
of biomedical research. Let me say, you have two sons, Lee and 
Douglas. Will you introduce yourselves? You are named in the 
record anyway.
    Mr. Lee Norton. My name is Lee Norton.
    Mr. Miller. And where do you go to school?
    Mr. Lee Norton. I go to Newtown High School.
    Mr. Miller. What year?
    Mr. Lee Norton. Junior.
    Mr. Miller. And is it Douglas?
    Mr. Douglas Norton. Yes, I am Doug Norton, and I go to 
Newtown Middle School. I am currently in the eighth grade.
    Mr. Miller. Thank you very much for coming today. Thank you 
very much for your testimony. And good luck to you.

                              ----------                              

                                           Tuesday, April 15, 1997.

                                WITNESS

JAN BRESLOW, M.D., AMERICAN HEART ASSOCIATION

    Mr. Miller. Next we have Dr. Breslow, President of the 
American Heart Association.
    Dr. Breslow. I am testifying on behalf of the American 
Heart Association. The American Heart Association is a not-for-
profit voluntary health organization with 4.2 million 
volunteers. Our mission is to fight heart disease and stroke, 
which kill one out of two Americans.
    The American Heart Association wishes to thank this 
committee for championing the cause of NIH. However, I come 
before you today with three disquieting emotions: alarm, dismay 
and a sense of urgency. I am alarmed because I see a dramatic 
increase in the prevalence of heart disease and stroke in the 
United States, with unparalleled costs to our society that 
threatens our future. Currently, we have 14 million Americans 
with symptomatic coronary heart disease and 4 million stroke 
survivors. The prevalence of these diseases is rising rapidly 
as various indicators show.
    In 1979, we had 1.2 million cardiovascular operations and 
procedures in the United States. Whereas in 1994, there were 
4.6 million, almost a fourfold increase. In 1979, we had 2.5 
million Americans with congestive heart failure, whereas in 
1994, there were 5 million, a twofold increase. Cardiovascular 
diseases already consume about one out of six health care 
dollars, with the price tag and medical expenses and lost 
productivity of $260 billion per year.
    Hardening of the arteries alone represents four of the top 
five disease categories for hospital discharges and costs to 
the health care system for all payors. These figures are 
alarming enough, but to borrow a phrase, we ain't seen nothing 
yet. The situation will worsen in the 21st century, as the 
first group of baby boomers reach the age of 65 in the year 
2010. Moreover, the last 10 years has seen alarming increases 
in the United States of cigarette smoking, obesity and physical 
inactivity, especially in the young, portending even greater 
increases in heart disease and stroke than expected.
    My second emotion is dismay. I am dismayed because the 
National Institutes of Health, acting under the misimpression 
that heart disease and stroke are solved problems, have for the 
last 15 years underfunded research into the basic causes, 
prevention and treatment of these important diseases. For 
example, I find it appalling that from 1986 to 1996, the 
overall NIH budget went up 36 percent, corrected for inflation, 
whereas funding for the heart program went down 5.5 percent.
    If the heart program had simply kept pace with the rest of 
the NIH over this same 10 year period, in 1996 alone, $303 
million more would have been spent to fight heart disease.
    Stroke has been similarly underfunded. The consequence of 
this chronic underfunding has been a gutting of research 
programs. This has been particularly devastating to young 
people, and has discouraged them from entering the field.
    In 1994, there were only 123 traditional research grants to 
investigators under the age of 40 in the heart program, or 
roughly one per medical school to fight the Nation's number one 
killer. This is almost a two-thirds decrease from the number 
just 10 years earlier. We have lost almost the whole next 
generation of researchers who will not be available to carry on 
the fight.
    My final emotion is a feeling of urgency. Our Government's 
response to the heart disease and stroke problem today will 
define the health and well-being of our citizenry in the next 
century. We have a choice between a Nation of physically and 
mentally healthy citizens capable of enjoying active and 
productive lives, living as independently as they wish late 
into their lives, or a population of frail elderly individuals, 
disabled by the end result of heart disease, which is 
congestive heart failure, and the end result of stroke, which 
causes both physical impairments and dementia.
    I also feel a sense of urgency about the scientific 
opportunities in heart disease and stroke research that glitter 
before us but are not realized. Opportunities that will result 
in prevention, better treatment and even cures. Research that 
will lead to ways of preventing heart artery blockages before 
they begin, the development of new treatments to rescue new 
patients from congestive heart failure. The identification of 
genes that cause congenital heart disease, and more knowledge 
about the components of heart healthy living and how to get 
people to comply, to name but a few.
    The American Heart Association has joined with Research 
America to call for a doubling of the Federal biomedical 
research budget by the year 2002. And we applaud similar 
legislative efforts on behalf of the NIH coming from Congress. 
In addition, we are calling on Congress to help us correct the 
mistakes of the past and make sure that research funding for 
heart disease and stroke receives its proper emphasis in the 
future.
    Thank you.
    [The prepared statement of Jan Breslow, M.D., follows:]

[Pages 119 - 129--The official Committee record contains additional material here.]


    Mr. Miller. Thank you, Dr. Breslow. As mentioned earlier, 
we visited the CDC yesterday. I am glad you brought that issue 
up, because it is not just biomedical research it's the 
communication of the knowledge we have.
    Let me ask you a question. AIDS is going through something 
similar right now, that people think we have cured AIDS almost, 
with the protease and all that, if you see the graphs, it is 
changed. And that has happened with the heart. I guess 
statistically, the number of people, there has been great 
advances. So I guess you are saying that----
    Dr. Breslow. Well, there is a myth that heart disease has 
gone away. You hear the statement that there has been a 50 
percent decrease in heart disease deaths. But that is untrue. 
Basically, they are referring to the age corrected death rate 
for heart disease. And the age correction is done back to the 
U.S. population, 1940, when we had about a fourth as many 
people over the age of 65. In fact, heart disease deaths have 
never fallen in the United States. They were up 60 percent 
worldwide in the last 30 years. And the prevalence of the 
disease is skyrocketing.
    So this is really going to be the defining health issue of 
the 21st century. This myth that is out there is that heart 
disease is going away, couldn't be further from the truth. It 
is already one out of six health care dollars and rising 
rapidly; 4.6 heart operations and procedures a year in the 
United States, angioplasties, bypasses and coronary 
catheterizations. We feel a great urgency and really a dismay 
at the nonchalance with which the NIH has approached this 
problem, and we need the help of Congress to rectify what we 
think is a very desperate situation.
    Thank you for the audience today.
    Mr. Miller. Thank you very much, Doctor.

                              ----------                              

                                           Tuesday, April 15, 1997.

                               WITNESSES

ALAN P. BROWNSTEIN, AMERICAN LIVER FOUNDATION
NICK LaRUSSO
DAVID McKNIGHT

    Mr. Miller. Next we will have Alan Brownstein, President 
and CEO of the American Liver Foundation. Welcome. Will you 
introduce the gentlemen with you, please?
    Mr. Brownstein. Thank you very much. I have Dr. Nick 
LaRusso, who is the President of the American Association for 
the Study of Liver Diseases, and Mr. David McKnight, who has 
had liver disease and has received a liver transplant. He is an 
attorney from Birmingham, Alabama. And Dr. LaRusso will begin 
our testimony today.
    Thank you.
    Dr. LaRusso. Good morning, Mr. Chairman. My name is 
Nicholas LaRusso, and I am a Professor of Medicine and of 
Biochemistry and Molecular Biology and Chairman of the Division 
of Gastroenterology at the Mayo Medical School Clinic and 
Foundation in Rochester, Minnesota.
    I am appearing before the subcommittee today in my capacity 
as President of the American Association for the Study of Liver 
Diseases, which is an organization of academic and practicing 
physicians, surgeons, pediatricians and pathologists, as well 
as biomedical researchers with an interest in diseases of the 
liver and biliary tree.
    Like most physician members of the AASLD, in addition to 
providing clinical services to patients with liver disease, I 
am involved in biomedical research and have been the fortunate 
recipient of an ongoing support from the NIH as a trainee and 
as an investigator for over 20 years.
    I would like to begin by echoing the previous speakers and 
expressing the gratitude of myself and the members of my 
organization to you and the other members of the committee for 
the exceptional leadership that you have provided in funding 
biomedical research, and in particular in supporting the NIH 
and the CDC programs. It is reassuring in these times of fiscal 
austerity for physicians and scientists to appreciate that we 
have political leaders who understand the importance of 
biomedical research.
    With regard to liver disease research, important progress 
and discoveries have been made in the last two decades. It is 
fair to say, I think, that we know more about what causes liver 
and biliary tract disease and can do more to prevent it, 
diagnose it and treat it, than ever before in the history of 
the specialty. That is largely due to the support from the NIH 
and your committee.
    Let me give one example of a recent discovery of great 
importance, namely, the discovery of the Hepatitis C virus. We 
now can diagnose Hepatitis C. And we can treat it. And perhaps 
equally importantly, we can prevent this transmission through 
blood transfusions because of the advances made in our 
understanding of the virus.
    You may recall, Mr. Chairman, that a consensus conference 
on Hepatitis C occurred last month at the NIH. And you may have 
seen the front page story in the Washington Post with the 
headline, ``Researchers Fear that Hepatitis C Epidemic Looms.'' 
The consensus conference made seven recommendations for 
additional research and based on estimates made by NIH and CDC 
for fiscal year 1998, costs of funding these new 
recommendations, as well as providing the professional judgment 
budget for viral hepatitis would total $21.9 million more than 
is included in President's fiscal year 1998 budget request.
    These recommendations are detailed in our joint prepared 
statement, and I am not going to discuss them in specific, 
except to say, however, that the recommendations include 
additional research for the development of a vaccine in 
Hepatitis C to prevent the onset of this disease. We already 
have effective vaccines for Hepatitis A, and for Hepatitis B. 
We are told by NIH that the cost of research focused on 
Hepatitis C vaccine development would require an additional $2 
million over the President's request.
    There are many liver disease research issues, other than 
those related to hepatitis, that could be significant and could 
be addressed with targeted research. In particular, pediatric 
liver disease and liver cancer.
    Let me close by again thanking you for providing guidance 
to the NIH. One significant outcome of the subcommittee's 
leadership is the schedule of an NIH mini-symposium in June of 
1997 on liver disease research. This symposium will bring 
together leaders in the community to develop an action plan for 
liver disease research. We will make that information available 
to the subcommittee from this consensus conference as soon as 
it's completed.
    I'd like to now ask my colleague Mr. Brownstein to make a 
couple of comments.
    Mr. Brownstein. First we have Mr. McKnight, then I will 
close.
    Mr. McKnight. Mr. Chairman and other staff members, it's a 
privilege to be before you today. I guess I, along with Ms. 
Breedlove and the Nortons, are here to remind you all that 
behind all these facts and figures, I do not know how you keep 
up with all those, but behind all those facts and figures and 
statistics, there is a person with a story and a family.
    I guess my story is that liver disease can happen to 
anyone. Eleven years ago, I had just passed the bar exam, my 
wife and I were expecting our first son, we had bought our 
house, and I led an active life as far as exercise. I did not 
drink, I did not smoke, and I never experimented with drugs. I 
had one sexual partner and continue to have one sexual partner 
in my whole life, my wife.
    In April of 1987, I began experiencing flu-like symptoms, 
which rapidly deteriorated to the point where in July of 1987, 
I was hospitalized and told I only had a few weeks to live.
    Thankfully, I had an option. I think that option is due to 
your hard work, your predecessors' hard work on this committee, 
and the funding for research that they provided. I was able to 
have a liver transplant.
    Within one year after my liver transplant, I was back to 
exercising regularly and working full time. I currently coach 
two Little League baseball teams. I teach a Sunday School class 
and I volunteer for charitable organizations.
    The point of my story would be that the increased research 
funding that you provide not only saves lives but enables 
people to contribute back to the community, these various 
activities that I have. And I am reminded today being April 
15th, that I have paid taxes for 10 years, since I have had the 
transplant. I look forward to paying them for 40 more years.
    I thank you for the research that this committee and your 
predecessors have provided before. I realize that we are 
preaching to the choir, and I thank you for all your hard work 
and effort. I hope that you will consider our request.
    Mr. Brownstein. Thank you. And by the way, I do know that 
he is a taxpayer, because in case he did not make his plane 
back to Birmingham, he brought his forms with him today, they 
are in his briefcase. [Laughter.]
    I am Alan Brownstein, I am the President of the American 
Liver Foundation. And we are dedicated to the prevention, 
treatment and cure of hepatitis and other liver and gall 
bladder disease through research and education.
    As you have just heard from Dr. LaRusso and Mr. McKnight, 
we are here as the unified voice of patients and medical 
leaders through our network of chapters throughout the United 
States.
    In closing our testimony today, I will summarize our 
recommendations for fiscal year 1998 funding with the details 
provided in our written statements.
    First, for NIH, we are requesting additional funding 
support in the following areas: $21.9 million to make viral 
hepatitis research a priority and to implement the research 
recommendations of the Hepatitis C Consensus Conference; $13.6 
million to implement the research agenda for liver diseases 
other than hepatitis, with an increased focus on children's 
liver disease.
    For CDC, we recommend $17 million needed to immunize the 4 
million 11 and 12 year olds in America against Hepatitis B. Two 
million dollars is recommended to expand surveillance and 
epidemiologic studies for chronic liver disease. One million 
dollars to support the hepatitis and liver diseaseinformation 
center in keeping with the recommendations of the Hepatitis C Consensus 
Conference.
    And lastly, for the Health Resources and Services 
Administration, we are asking for $5 million to support 
increased efforts to stimulate organ donor awareness. There are 
50,000 people waiting for organs in America. There are 7,900 
people waiting for livers in America, as I speak with you 
today.
    So in closing, I thank you once again for giving us the 
opportunity to speak on behalf of the 25 millon Americans from 
all walks of life who are affected by liver diseases.
    Thank you very much.
    [The prepared statement of Alan Brownstein follows:]

[Pages 134 - 142--The official Committee record contains additional material here.]


    Mr. Miller. Thank you all very much for being with us 
today. We appreciate that.
                              ----------                              

                                           Tuesday, April 15, 1997.

                                WITNESS

GERARD TURINO, M.D., AMERICAN LUNG ASSOCIATION

    Mr. Miller. Next we will have the American Lung 
Association, Dr. Gerard Turino. Welcome.
    Dr. Turino. Thank you.
    Mr. Chairman and members of the subcommittee, I am Dr. 
Gerard Turino, and I am speaking on behalf of the American Lung 
Association and its medical section, the American Thoracic 
Society.
    The American Lung Association and the American Thoracic 
Society appreciate the bipartisan support that you, Mr. 
Chairman, and this committee, have shown for biomedical 
research and public health programs. While concerned 
specifically about research related to the prevention and 
control of lung disease, the American Lung Association and the 
American Thoracic Society believes that medical research is an 
investment critical to the future health of every American.
    As the subcommittee reviews funding options for the 
National Institutes of Health programs, it is important to 
provide parity for all institutes relative to any funding 
increases. Lung disease is the third leading cause of death in 
the United States, responsible for one in every seven deaths. 
More than 30 million Americans suffer from a chronic lung 
disease. Lung diseases cost the U.S. economy an estimated $84.4 
billion annually. Research can help cut these 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 in the whole body. Lung diseases include chronic 
obstructive pulmonary disease, which includes pulmonary 
emphysema, and these are the fourth leading causes of 
mortality, lung cancers, tuberculosis, pneumonia, influenza, 
sleep disordered breathing, pediatric lung disorders, 
occupational lung disease, sarcoidosis, and a problem of 
growing concern in the U.S., and that is asthma.
    Asthma is a chronic lung disease where the bronchial tubes 
of the lungs become swollen and constrict, preventing air from 
getting into or out of the lung. These obstructive spasms of 
the bronchi are caused by a broad range of environmental 
triggers that vary from one asthma suffer to another.
    Asthma is on the rise. An estimated 14.6 million Americans 
have asthma; 4.8 million are under the age of 18. Since 1984, 
the prevalence of pediatric asthma has risen 72 percent. Rates 
are increasing for all ethnic groups and especially for African 
American and Latino children.
    Asthma is expensive. The growth in the prevalence of asthma 
will have significant impact on our Nation's health 
expenditures, especially Medicaid. Currently, asthma costs the 
U.S. $12 billion a year. Asthma attacks bring 1.6 million 
people to the emergency room of hospitals each year.
    Asthma kills. Mr. Chairman, you may recall in 1995, the 
mysterious death of the famous young model, Chrissie Taylor, 
which was in fact caused by asthma. In 1993, 5,167 children 
died as a result of an asthma attack. A disproportionate share 
of these deaths were in African-American families.
    The good news on asthma is that the research is beginning 
to bring answers, and with answers comes hope for a new 
treatment and a cure for asthma. NIH supported research has 
provided greater understanding of what is actually going wrong 
in a person suffering from asthma, why exposure to airborne 
substances causes bronchial inflammation, why the immune system 
hyper-responds, and what kinds of cell to cell communication 
mediate this response.
    Even more promising is that NIH sponsored researchers are 
beginning to establish linkages between candidate genes and 
asthma. In the near future, we may expect that this research 
will identify the gene or genes that cause asthma.
    Mr. Chairman, we think that a cure for asthma is within 
reach. Within the foreseeable future, researchers expect to 
fully describe the unique combination of genetic and 
environmental factors that can successfully address questions 
of prevention and cure. To this end, the American Lung 
Association and the American Thoracic Society will announce 
anew asthma research initiative at our international conference in May. 
We are confident that with the successful pursuit of this research 
initiative in collaboration with NIH and the pharmaceutical industry, a 
cure for asthma is a realistic hope and expectation.
    Mr. Chairman, although I have today highlighted research 
surrounding asthma, NIH sponsored research is making progress 
against a number of lung diseases.
    Mr. Chairman, the research community is extremely grateful 
for the support you and the subcommittee have provided for NIH 
research. We are concerned that while the NIH research budget 
has increased, the administrative budget or research management 
and support function has remained flat.
    Administrative functions of the NIH play a vital role in 
the advancement of science, awarding and monitoring grants, 
ensuring scientific and ethical standards in the research 
community, developing and disseminating patient and provider 
educational materials, and a convening state of the art 
scientific meetings are just a few of the functions that NIH 
conducts with its administrative budget.
    If the administrative budget of NIH continues to shrink 
relative to other NIH activities, the eventual result will be a 
reduction in the quality of NIH supported science.
    Mr. Chairman, it is our understanding that the subcommittee 
and Dr. Varmus have begun a dialogue on how best to resolve 
this issue. We encourage the subcommittee to find a mechanism 
to find adequate support for the administrative functions of 
NIH.
    At this point I would like to make a few comments about 
tuberculosis research and control initiatives. Although 
tuberculosis is a preventable and curable disease, it still 
persists as a public health problem in the United States. You 
have no doubt heard of the resurgence of tuberculosis. After 
years of declining case rates, the number of reported cases in 
the United States rose by over 20 percent in just seven years, 
from 22,200 reported cases in 1985 to 25,287 reported cases in 
1993.
    Even more disturbing is the development of multi-drug 
resistant TB. Multi-drug resistant TB are strains of 
tuberculosis bacterium that have developed a resistance to the 
drugs used to treat TB. In the U.S. strains of multi-drug 
resistant TB are resistant to as many as seven drugs.
    While TB cases declined nationally, TB cases continued to 
increase in some areas. Twenty of the 50 States and the 
District of Columbia reported either no change or an increase 
in TB cases. 1996 was marked by a sporadic outbreak of multi-
drug resistant TB, sporadic cases of strain W, and a deadly TB 
strain resistant to the best anti-TB drugs. Originally reported 
in New York, New Jersey and Florida, this organism has now been 
found in South Carolina, North Carolina, Colorado, Ohio, 
Pennsylvania, Georgia, Nevada, California and Puerto Rico.
    To combat TB in the U.S. and eliminate tuberculosis 
worldwide would require far more than just intensified and 
widespread use of prevention and control methods. It will also 
require the development of new drugs to treat these multi-drug 
resistant organisms.
    The last new drug developed to treat TB became available in 
1972. It will require new diagnostic and preventive 
technologies and the rapid transmission of new developed 
technologies to be given to the field for this purpose.
    In conclusion, Mr. Chairman, lung disease is a growing 
problem in the United States. It is America's number three 
killer, responsible for one in seven deaths. The lung disease 
death rate continues to climb while rates for others, first and 
second ranked cause of death, such as heart disease and cancer, 
have been dropping. Overall, lung disease and breathing 
problems constitute the number one killer of babies under the 
age of one year. Worldwide, TB kills 3 million people each 
year, more people than any other single infectious agent.
    Mr. Chairman, the level of support this committee approves 
for lung disease programs should reflect this urgency.
    Thank you.
    [The prepared statement of Gerard Turino follows:]

[Pages 146 - 154--The official Committee record contains additional material here.]


    Mr. Miller. Thank you, Dr. Turino.
    Yesterday this committee was in Atlanta at CDC. We heard 
presentation concerning asthma from NIOSH. It was interesting 
to see the work they are doing. And of course, we've heard it 
from NIH. We thank you for the work you are doing in this area, 
and thank you for coming to testify before us today.
    Dr. Turino. Thank you.
                              ----------                              

                                           Tuesday, April 15, 1997.

                                WITNESS

PATSY BRANNON, AMERICAN SOCIETY FOR NUTRITIONAL SCIENCES

    Mr. Miller. Next we Will have Dr. Brannon, with the 
American Society of Nutritional Sciences, Chairman of Nutrition 
and Food Sciences, University of Maryland. Thank you for being 
here today.
    Ms. Brannon. Thank you, Mr. Chairman.
    I'm Patsy Brannon. I am a member of the American Society 
for Nutritional Sciences. And I am also Chair and Professor of 
Nutrition and Food Science at the University of Maryland, as 
you mentioned.
    Today, I speak to you as a member of the American Society 
for Nutritional Sciences in support of the research budget of 
the National Institutes of Health. I would like to thank the 
members on both sides of the aisle who have supported Federal 
investment in scientific research.
    Researchers and all of society should be grateful to this 
subcommittee for their continued support of the NIH budget, 
especially in these tight fiscal times. The American Society 
for Nutritional Sciences believes that strong continued support 
of research should be a primary goal, as Americans continue to 
face new challenges to maintain health and quality of life in 
the next century. The American Society for Nutritional Sciences 
is the principal professional organization of 3,500 nutrition 
research scientists in the U.S. whose purpose is to develop and 
extend knowledge and application of nutrition.
    We are a constituent society of the Federation of American 
Societies of Experimental Biology, known to you as FASEB. And 
leaders of our Society participated in the FASEB Consensus 
Conference on Biomedical Research Funding.
    The American Society for Nutritional Sciences endorses 
FASEB's recommendation for a 9 percent increase in NIH funding 
in fiscal year 1998 over the funding for fiscal year 1997, in 
order to allow funding for new research projects at a success 
rate of 30 percent. I must add, it has been some time since new 
projects were funded at NIH to a success rate of 30 percent, 
probably over 10 years. And one thing that I would like to 
focus on in my testimony today is the value of nutrition 
research and the role of an expanded commitment to nutrition 
research at NIH.
    Although mostly disciplinary, nutrition research has the 
goal to understand the role of appropriate nutrition in growth, 
development, quality of life, reduction in chronic disease risk 
and treatment of existing disease. As Congress continues to 
solve the problem of health care costs, it is important to 
recognize that continued investment in nutrition research is 
one of the best means of keeping health care costs down. 
Results from nutrition research have already led to cost saving 
preventable health care for chronic diseases like cancer, 
obesity, and heart diseases.
    New advances and research approaches are dramatically 
changing the direction of nutrition research, and promise 
continued advancement in disease prevention for the continued 
investment in this research. Techniques like biotechnology, 
cellular and molecular biology allow us to examine the roles of 
essential nutrients in people of all ages, and allow us to 
determine the interactions of nutrients in genes to modulate 
disease risk.
    I would like to give just some brief examples of 
developments in nutrition research funded by various NIH 
institutes. One of the most exciting developments in the past 
five years has been research on causes and treatments of 
obesity, the cloning of the ob gene, the obese gene in mice, 
and identification of its homologue on humans has led to major 
breakthroughs in our understanding of the development of 
obesity.
    This gene yields a protein product called leptin. I think 
most people have heard some press about this. It is a satiety 
factor controlling food intake that acts through the central 
nervous system.
    Injections of leptin to obese mice results in pronounced 
weight loss. And rapid progress is occurring in understanding 
leptin's role in humans. It is becoming clearer that in humans, 
there is actually a resistance to leptin that may be analogous 
to the resistance of insulin in non-insulin dependent diabetes.
    At last week's experimental biology meetings, there was 
much excitement and considerable results from research 
supported by NIH on the role of leptin in humans and possible 
treatments that may arise.
    These results may lead to effective medical therapies in 
people testing for genetic predisposition to obesity and 
reducing the prevalence of many chronic diseases for which 
obesity is a risk factor, such as non-insulin dependent 
diabetes, cardiovascular disease, cancer, gallstones and 
stroke.
    Another example of results from nutrition related research 
include the NIDDK landmark diabetes control and complications 
trial that has shown that careful control of blood glucose 
management can lead to a 50 percent decrease in the risk of 
life threatening complications in this disease. Exciting study 
of the potential of bioactive flavonoid compounds found in 
fruits and vegetables in modulating the response of prostate 
cells to antigens may lead to new directions in prostate cancer 
prevention.
    Importantly, folic acid supplementation reduces the 
occurrence of neural tube defects, like spina bifida, which are 
common birth defects. Current research is investigating the 
interaction of folic acid and methianinine in the development 
of the neural tube. We really hope that at some point, we can 
prevent neural tube defects, such as the ones experienced by 
Taylor, who spoke earlier today.
    These are a few of the many advances nutrition research has 
accomplished. Despite these achievements, we need to continue 
to invest in nutrition research because of the challenges that 
are going to face us in the 21st century. We have an increasing 
population, we have an increasing international 
competitiveness, environmental concerns are with us, and 
minimizing health care costs through disease prevention remain 
an important component of what we face.
    As we understand more about the genetic basis of chronic 
diseases, and we will understand more through the human genome 
project being supported by NIH, we will need to understand 
better how nutrition and diet can decrease disease in those 
genetically at risk. Answers to these problems can be found 
through research supported by NIH and other Federal agencies.
    To reiterate, the American Society for Nutritional Sciences 
strongly supports the Federal investment in competitive peer-
reviewed grant programs that support scientists in the most 
promising areas of research. We believe that the best results 
can come from competitive peer-reviewed research. Even so, and 
even with the most advanced developments happening today, there 
are still insufficient funds to keep the research going.
    The inability to obtain research funding is taking its 
toll. As you have heard from other testifiers, an important 
area where this toll is being felt is in the Nation's valuable 
assets. The next generation of scientists, as young scientists, 
are discouraged by the limited available funding and seek other 
careers.
    A second area where this toll is being felt is on the 
renewal of meritorious grant applications which sometimes just 
missed fundable scores and must be resubmitted, leading to a 
delay of over a year in the ultimate funding of these projects. 
We support developing mechanisms of interim awards and partial 
funding of renewals of meritorious grant applications that fall 
just below the threshold for funding.
    Although we face tight fiscal constraints, we certainly 
understand the difficult choices that the subcommittee faces. 
The American Society for Nutritional Sciences believes our goal 
to increase funding is a legitimate request that will enable 
NIH to make the most of recent discoveries, provide foundations 
for future breakthroughs, and train the young scientists needed 
to make these breakthroughs to solve the new challenges we will 
face as new diseases emerge.
    We thank you for the opportunity to present our views. I 
personally thank you for the previous support this subcommittee 
has shown to NIH.
    [The prepared statement of Patsy Brannon follows:]

[Pages 158 - 164--The official Committee record contains additional material here.]


    Mr. Miller. Thank you very much, Dr. Brannon.

                              ----------                              

                                           Tuesday, April 15, 1997.

                               WITNESSES

COLLEEN MORTENSEN, AMERICAN SOCIETY OF CLINICAL PATHOLOGISTS
LINDA FELL

    Mr. Miller. Next, from the American Society of Clinical 
Pathologists, Colleen Mortensen.
    Ms. Mortensen. Mr. Miller, my name is Colleen Mortensen, 
and I am a medical technologist at Great Plains Regional 
Medical Center in North Platte, Nebraska. I am a recent 
graduate of the medical technology program funded by the Title 
VII Allied Health Project Grant, and Linda Fell is with me, 
today, she is the education coordinator for the Division of 
Medical Technology at the University of Nebraska Medical Center 
in Omaha.
    I just hope that you will indulge me for a few minutes 
while I explain why I am here today. I am a native from Omaha. 
I went to school at Creighton University in 1971. I was unable 
to complete my degree at that time, because both my parents 
passed away. I married a man from Western Nebraska and we had 
four children.
    My husband is a fourth generation farmer near Curtis, 
Nebraska. And if you are not familiar with the territory, I 
will explain to you where we are. I am six hours West of Omaha. 
The nearest town with a university is Kearney, Nebraska. It is 
90 miles away. My job is 40 miles away from our house, and I 
drive 30 of that on dirt roads and I do not see anybody.
    In a recent snowstorm that we had, our electricity went 
out. We were out of electricity for 17 days. We were the last 
ones on the line to come back. So you have kind of an idea 
where I live. And I am not complaining. I like living in rural 
Nebraska. After my taxi ride over here, I am anxious to go 
back.
    Once my children were in school, I wanted to continue my 
education. Driving back to Omaha to attend Creighton or the 
University of Nebraska Medical Center just was not a 
possibility.
    Then I heard there was a special program the University of 
Nebraska was offering where I could study in rural Nebraska. 
This program was awarded startup funds by the Title VII Allied 
Health Project Grant program. With this, I could go and do a 
student lab in Kearney, Nebraska, which is 90 miles from my 
house. And there the students received an education via 
satellite and a curriculum.
    I was accepted into the program at age 40. I had to do a 
year of upgrading my education, which was a 180 mile round trip 
every day for a year. I was able to continue my education in 
medical technology and because of the Allied health program 
rural encouragement, I was able to finish my clinical rotation 
in North Platte, Nebraska. North Platte is a town of about 
25,000 people, and they have a lot of difficulty finding 
qualified individuals to work in their hospital laboratories.
    The Great Plains Regional Medical Center provides services 
for people who live in Nebraska, Wyoming and Kansas. A lot of 
our laboratory personnel provide services using a small plane 
to get to their outlying clients.
    I am pleased to tell you now, I am a professional. I am a 
nationally certified medical technologist. I work at Great 
Plains Regional Medical Center in North Platte. In my spare 
time, I do use some of my skills in the town that I live near, 
it is Curtis, Nebraska. I draw blood for a nursing home, which 
in the past was unable to have their elderly patients drawn on 
a regular basis, because they did not have anybody who was 
capable of doing this.
    Ms. Fell. With the $358,000 awarded in 1992 to the 
University of Nebraska Medical Center Division of Medical 
Technology from the Allied Health Project Grants, 45 students 
graduated from our rural education program. Of these, 93 
percent are currently working in rural communities. Because of 
the initial funds from the Allied Health Grant, the success of 
this program has increased over the years. Our rural education 
program is now self-sufficient. This program has increased its 
percent of graduates accepting jobs in rural areas from 8 
percent prior to the grant to 50 percent in 1996.
    The Allied Health Project Grants program has been effective 
in addressing the training and educational needs of Allied 
health personnel, but further strides in funding are still 
needed to increase the number of Allied health professionals to 
an adequate level. In light of the success of these programs 
and the continuing need for additional Allied health 
professionals in our Nation's health care delivery system, we 
urge you to continue funding the Allied Health Project Grants 
program at $10 million for fiscal year 1998.
    Thank you for your consideration. We would be pleased to 
answer any questions.
    [The prepared statements of Colleen Mortensen and Linda 
Fell follows:]

[Pages 167 - 178--The official Committee record contains additional material here.]


    Mr. Miller. Thank you. I appreciate your bringing to our 
attention the issue of rural health in this country. We talk 
about medical centers so much here today, but there are some 
unique problems, and I admire you for what you are doing, to go 
back to your education. I am glad that we were able to help in 
some little way.
    Ms. Mortensen. Well, there is not a lot of people out 
there, and I kind of feel like a flower blooming on the 
prairie.
    Mr. Miller. Congratulations.
    Ms. Fell. Thank you for all your help.
    Mr. Miller. Thank you.
                              ----------                              

                                           Tuesday, April 15, 1997.

                                 WITNESS

HAROLD HELDERMAN, M.D., AMERICAN SOCIETY OF TRANSPLANT PHYSICIANS

    Mr. Miller. Next we will have Dr. Harold Helderman, 
American Society of Transplant Physicians.
    Dr. Helderman. Thank you, Mr. Miller.
    I appreciate the opportunity to address you on behalf of 
the American Society of Transplant Physicians, called the ASTP. 
And I commend your patience and forbearance for listening to 
this laundry list of requests and requirements in the field of 
biomedical research. I shall be another one of the plaintiffs 
before you.
    I am Hal Helderman, I am a Professor of Medicine at 
Vanderbilt University. And I am a Medical Director of the 
Vanderbilt Transplant Center, which I partnered with Senator 
Bill Frist, before he ran for office.
    But more pertinent for this exercise, I am the President 
elect of the American Society of Transplant Physicians, which 
has no governmental support, was established in 1982, and 
currently has a membership of above 1,000 professionals 
physicians, surgeons and scientists, who run the gamut of 
disciplines from cardiology, hepatology, nephrology, 
pulmonology, infectious disease, histocompatibility and basic 
research. Mr. McKnight, who was here earlier, is just an 
example, a physical embodiment of some of the things that my 
society does over the years.
    I must tell you, in parentheses, both my society and I 
personally thank the society for its support of the NIH and its 
research efforts over many years. My entire career has been 
basically funded by the NIH, from training through the research 
that I was able to do at the basic lab, and clinical lab.
    But important for transplantation, I must tell you over the 
last 20 years, that the transplantation of solid organs has 
moved from experimental to accepted therapy, with over 200,000 
organ transplants being done in the last quarter century. 
Twenty thousand done last year alone.
    The success with this procedure has improved greatly over 
the years, and now almost enjoys success rates of between 75 
and 98 percent, depending on the organ. Realization of the 
improved survival for people with end stage organ disease has 
led to a tremendous increase in the number of patients placed 
on transplant waiting lists, increasing from 16,000 in 1988 to 
over 51,000. Deaths of patients on the list, not as lucky as 
Mr. McKnight, has increased from almost 2,900 in 1993 to 3,500 
in 1996. Mr. Miller, that translates to 10 patients dying every 
day in the United States from the lack of an organ.
    The overwhelming limitation to being able to offer this 
life saving and enhancing procedure to more patients is the 
shortage of available donors and the disparity between supply 
of available donors and those patients who need them. While 
many individuals and organizations are working on this problem, 
we continue to seek more support and funds for investment to 
enhance organ donor awareness and to improve the public trust 
in this process.
    We also strongly believe that research in transplantation 
leads to solutions which save lives. In our written testimony, 
we have identified a number of clinical and research areas for 
your interest. I would like this morning, or this afternoon, to 
highlight several of the most important of these for your 
consideration.
    First, in the clinical arena, our priority is the extension 
of clinical trials in new immunosuppressive strategies to other 
organs. Presently, there are initiatives in transplantation, in 
clinical trials, and in kidney transplantation alone. We need 
to move these trials into the other organs, such as the liver 
that you saw was implanted into Mr. McKnight.
    Now I would like to turn to the area of basic research and 
highlight two areas for your interest. First, let me talk about 
chronic rejection. For most solid organs transplanted, chronic 
rejection continues to be the major cause of long term graft 
loss, which costs the taxpayer many millions of dollars. 
Research into this area must remain a top priority. New 
approaches are being examined, including gene therapy and the 
marvels of molecular biology.
    We call for more research into chronic rejection. And this 
kind of research is another area in which the NIH and private 
industry can partner to enhance outcomes.
    A second highlighted area is the area of 
zenotransplantation, which is the transplantation of animal 
organs and tissues into man. The increasing disparity between 
the number of patients listed for transplant and the available 
donors leads to an increasing number of patients, as I have 
already detailed, dying from the waiting list, nearly 10 per 
day.
    Use of organs and tissues from non-primate animals could 
provide an immediate resource available for patients with the 
critical needs for a life saving transplant. Then NIH needs to 
continue and have increased support in this important area of 
exploration. We must learn the immunologic barriers in 
xenotransplant, strategies to overcome these barriers, and most 
importantly, safeguards for the American populace with respect 
to the possibility of xenoinfections, infections brought from 
animals into man.
    I have tried to outline for you some of the major areas of 
clinical and basic research in extra-renal organ transplants 
that need increasing funding to help solve the problems 
associated with transplantation. Although expensive, 
transplantation is cost effective, and may be the only hope for 
not just improved survival for many patients, but for a chance 
for patients to raise their families and return to gainful 
employment and yes, even pay their taxes.
    The ASTP believes that we are on the threshold of many 
important advances in our understanding of the problems posed 
by the transplanted organ, and research is critical to making 
this option available to more people. There can be few areas 
more visible, truly life saving areas, with dividends and money 
invested in research than the field of transplantation.
    I thank you for your previous support and for the being 
able to testify to this committee.
    [The prepared statement of Harold Helderman follows:]

[Pages 182 - 190--The official Committee record contains additional material here.]


    Mr. Miller. Thank you for being here today. And we've come 
a long way in the area of transplant. A long way to continue, 
though, I guess. Thank you very much.
    Dr. Helderman. Thank you, sir.

                              ----------                              

                                           Tuesday, April 15, 1997.

                                WITNESS

       DIANA S. BEATTIE, ASSOCIATION OF AMERICAN MEDICAL COLLEGES

    Mr. Miller. Now we will have Dr. Beattie.
    Ms. Beattie. Good afternoon, Mr. Chairman.
    My name is Diana Beattie. I am the Professor and Chair of 
Biochemistry at West Virginia University School of Medicine, 
another rural State with different kinds of problems.
    This morning, I am representing the Association of American 
Medical Colleges (AAMC). The AAMC appreciates this opportunity 
to comment on the fiscal year 1998 funding for the NIH for 
health professions education and the Agency for Health Care 
Policy and Research.
    The AAMC thanks the subcommittee for its continued support 
of these programs and in particular, Mr. Chairman, we thank you 
for your leadership on behalf of medical research.
    The Federal investment in medical research through the NIH 
continues to yield the abundance of fundamental and applied 
knowledge that few of the advances in the practice of medicine 
that have distinguished the United States globally. In addition 
to its enormous benefit to the health of the American people, 
NIH sponsored research also continues to provide the basis for 
much of the success of the biotechnology in pharmaceutical 
industries.
    Still, America faces serious health problems, as we have 
heard this morning. New threats constantly appear. 
Congressional support for medical research has produced a 
wealth of scientific opportunities to answer these challenges. 
A testimony to the abundant opportunities available is the NIH 
Director's professional judgment budget, which calls for a 9 
percent funding increase in fiscal year 1998.
    The AAMC endorses the recommendation of the Ad Hoc Group 
for Medical Research Funding for a 9 percent increase in the 
NIH budget. The AAMC believes that this budget represents the 
most reliable estimate of the level of funding needed to 
sustain the high standards of scientific achievement embodied 
by the NIH.
    The Ad Hoc Group proposal would provide additional support 
for peer-reviewed, investigated, and initiated basic research, 
which asks questions about the fundamental cellular and 
molecular events of life, which are essential toward progress 
in conquering disease.
    Other areas of concern include clinical research and the 
research infrastructure. With regard to the research 
infrastructure, the AAMC urges the subcommittee to pay 
particular attention to the needs of the National Center for 
Research Resources, which provides support for the general 
clinical research centers program and other essential elements 
of a vigorous research environment.
    The transformation of the health care system to a market 
driven price competitive structure poses a significant threat 
to the ability of medical schools and teaching hospitals to 
maintain an environment for research and innovation. There is a 
growing sense that changes in the health care marketplace that 
are endangering this basic support.
    The AAMC strongly urges the Congress to review the 
biomedical research support grant, and the BRSG program, as a 
potential model for a program of flexible institutional 
support.
    The geographic and specialty maldistribution of physicians 
in the United States are critical issues facing both the 
Congress and the Nation. The AAMC urges the subcommittee to 
provide additional funding for the National Health Services 
Corps and the Health Professions Education programs authorized 
under Title VII and VIII of the Public Health Service Act, 
which play a major role in addressing these problems.
    The AAMC thanks the subcommittee for restoring funding in 
fiscal year 1997 for the Title VII and VIII health professions 
and nursing education programs. The AAMC joins the health 
professions and nursing education coalition in urging the 
subcommittee to continue its support of the Title VII and VIII 
programs by providing at least $302 million for fiscal year 
1998. This represents a 3 percent increase over fiscal year 
1997, which is about inflation.
    The drive to cut health care costs raises concerns about 
the quality and appropriateness of care and the choices 
available to consumers, as we are learning about constantly in 
the news. The Agency for Health Care Policy and Research, 
(AHCPR), directly responds to these concerns. AHCPR is charged 
with sponsoring health services research designed to improve 
the quality of health care, decrease health care costs and 
provide access to essential health care services.
    The AAMC believes strongly in the value of health services 
research, as this Nation continues to strive to continue to 
provide high quality health care for all of its citizens.
    The AAMC endorses the Friends of AHCPR recommendation for 
fiscal year 1998 funding level of $160 million for AHCPR. In 
addition, we urge the subcommittee to limit the transfer of 
funds to AHCPR from the so-called 1 percent evaluation set 
aside in the public health service. The AAMC recommends that 
funding for the agency should be provided directly through the 
regular appropriations process.
    The AAMC appreciate the continued support the subcommittee 
has given all of these programs. And we look forward to working 
with you on them.
    Thank you.
    [The prepared statement of Diana Beattie follows:]

[Pages 193 - 202--The official Committee record contains additional material here.]


    Mr. Miller. Thank you very much for being with us, Dr. 
Beattie. We appreciate it.
    I am sorry we are running a little over time today.

                              ----------                              

                                           Tuesday, April 15, 1997.

                                WITNESSES

RICHARD GUERRANT, M.D., AMERICAN SOCIETY OF TROPICAL MEDICINE AND 
    HYGIENE
THOMAS H. HUNTER, PROFESSOR OF INTERNATIONAL MEDICINE
    Mr. Miller. Dr. Guerrant, welcome.
    Dr. Guerrant. Thank you, and good afternoon. I am impressed 
by your patience, Mr. Miller.
    I am Dick Guerrant, and I am a physician researcher who 
works, of all things, diarrheal diseases at the University of 
Virginia and in the Northeast of Brazil. As President of the 
American Society of Tropical Medicine and Hygiene, I represent 
what is probably 3,000 or more of the most dedicated, 
adventurous individuals in our society. There are physicians 
and investigators who stand between us, the American public, 
and some of the gravest threats, I think, to our future.
    People like Dr. James Hughes, whom I believe you met 
yesterday, as Director of the Centers for Disease Control, the 
Center for Infectious Diseases. Jim, just parenthetically, got 
his infectious diseases training on our NIH training grant at 
the University of Virginia as my first fellow, working on 
diarrheal diseases, of all things.
    I am here today to really continue this theme of urging 
your continued support, very important support, of these vital 
activities, especially in tropical and emerging infectious 
diseases that are fostered by the NIH and by CDC. We really 
have made tremendous progress in our battle against infectious 
diseases.
    However, the microorganisms are, as we have been hearing, 
are getting resistant to our best drugs. And the globalization 
of our food supply and growing international travel really 
bring these once very distant infections right up to our 
doorsteps and onto our dining room tables.
    From working for 30 years, it is hard to believe, in Zaire, 
Bangladesh and Brazil, I really have developed an increasing 
concern about the threats that tropical and emerging infectious 
diseases pose to us right here in the United States. Not just 
Ebola virus, that gets all the press, it seems, but hemorrhagic 
e-coli in our hamburger, the cryptosporidium parasites in the 
Milwaukee water, it was the water that made Milwaukee famous. 
And that parasite is completely resistant to our best efforts 
at chlorination of our water supply.
    Hepatitis A, we were hearing earlier today, has been 
carried by Mexican strawberries to school children in Michigan. 
And cyclospora parasites were brought last year by Guatemalan 
raspberries right to the tables of whom the most affluent 
people in our society and over 1,400 people through the United 
States and Canada.
    So it is quite remarkable when you look back 40 years ago, 
we only had about 300 or 400 items on our supermarket shelves. 
Today, that is over 30,000 items on our average supermarket 
store shelves. The kiwi fruit that we enjoy in the middle of 
January right around here did not come from the Fairfax County 
farms, it came from areas that we worry about.
    Two of the greatest threats are diarrheal diseases and 
malaria, that I would just like to mention very briefly. 
Supported by the NIH, we work in Fortaleza, in the Northeast of 
Brazil. I could not bring them with me, but here are the 
children with whom we work. It is not surprising, when you 
start looking at the conditions where children live, that 
diarrheal diseases are the biggest health problem and the 
biggest cause of death worldwide. It is over 3 million children 
every year. I would have to go through a calculation, because I 
do not comprehend it, that is more than 9,000 children each day 
who die of a diarrheal illness.
    In fact, probably of even graver concern, are not the ones 
who die, but one in every four of these children may die before 
their fifth birthday. The other three who undergo, not one or 
two, like our kids, but eight or ten malnourishing and 
dehydrating diarrheal illnesses, in their most formative years 
of life. It is from studying some of these diseases that we are 
learning new diagnostics and we're learning about net 
pathogens, types of e-coli, and a new oral rehydration and 
nutrition therapy with glutamine that has direct relevance to 
our patients and our families here in the United States, in 
hospitals, in nursing homes and in our day care centers.
    Another enteric infection that we have learned to pay a lot 
of attention to lately is helicobactor, the H. pylori bacteria 
that causes ulcers in our stomachs. It is not treatable, we can 
eradicate ulcer disease for the savings of millions of dollars. 
We are learning that we can prevent stomach cancer by 
controlling this infection.
    Another huge problem, of course, is malaria. Once nearly 
eradicated from many countries, it is now returning with a 
vengeance. The parasite is resistant to our best drugs. The 
mosquitos are resistant to pesticides.
    We are really very encouraged by Dr. Varmus' recent 
attention to malaria and the new NIH initiative on malaria and 
vaccine development.
    NIH work, of course, on infectious diseases, is focused 
mainly in the Institute of Allergy and Infectious Diseases, 
where they have tremendously important key international 
collaborative research programs like ours, as well as programs 
on emerging diseases. Of course, that is the main agency for 
vaccine development.
    In addition, NIH supports the Fogarty Center, with key 
international collaborations being built.
    Mr. Miller. I have to make an urgent phone call in the next 
minute or two. And Dr. Maul is here yet, too, if you will give 
me a couple of minutes to make a phone call I have got to 
complete by 12:30, and then we will finish.
    As you know, we were at the CDC yesterday talking about a 
lot of these same issues. If you do not mind waiting for a few 
minutes, to allow me make this call.
    [Recess.]
    Mr. Miller. I apologize. We will continue.
    I find this very interesting to sit through. It is like 
yesterday, the day we spent at CDC, and at Morehouse School of 
Medicine. Whenever we have an opportunity to go visit NIH or 
other programs, or in my district when I am up at South 
Florida, I find it fascinating.
    Your discussion is very relevant to what was discussed 
yesterday. So continue, and then we will wrap up.
    Dr. Guerrant. Well, I am right at my five minutes, I 
believe. I am very grateful for this opportunity to really 
support all that has been said about NIH and CDC. Because that 
is really where the training and the infrastructure is coming 
from.
    You saw the devastating nature of those laboratories 
yesterday that are now being rebuilt, I think thanks to some 
wonderful leadership there and here.
    In a summary of that, the Society of Tropical Medicine and 
Hygiene is really, very, very keenly appreciative of those 
efforts on behalf of NIH and CDC. It is clear that if we do not 
have the science, and the international collaborations and the 
surveillance, we reallyare in trouble. If we can do those 
things through our existing structures with NIH and CDC, we feel 
strongly that a 9 percent increase for NIH and the Administration's 
requested budget for $25 million for CDC is a fantastic bargain.
    As a member of NIH study section and somebody who works on 
diarrhea in Brazil, I can say that I do not think there are any 
dollars that are more carefully and importantly spent. So we 
really appreciate your tremendous efforts on that behalf.
    [The prepared statement of Richard Guerrant, M.D., 
follows:]

[Pages 206 - 215--The official Committee record contains additional material here.]


    Mr. Miller. Thank you very much.
    Dr. Guerrant. Thank you.
                              ----------                              

                                           Tuesday, April 15, 1997.

                                WITNESS

KIMBALL I. MAUL, M.D., AMERICAN TRAUMA SOCIETY

    Mr. Miller. Dr. Maul, I apologize for your being the last 
on the list, and I apologize for having to take that short 
break.
    Dr. Maul. First let me say no apologies are necessary.
    My name is Kimball Maul. I am a Professor of surgery and 
Vice Chairman of the Department of Surgery at Loyola University 
Medical Center, and I direct the Division of Trauma and 
Emergency Medical Services there at the Medical Center.
    I must compliment you on your attentiveness to the 
presenters today. I have been very impressed how you have 
withstood the assault.
    I am actually here on behalf of the American Trauma 
Society's over 2,000 members to speak in support of improved 
funding for the Center, the CDC Center for Injury Prevention 
and Control.
    However, the perspective I would like to share with you 
today is not that of the immediate past president of the 
American Trauma Society, which is a charitable organization 
dedicated to injury prevention, public education and improved 
care of the injured, but from the perspective of a practicing 
trauma surgeon. I work at Loyola University Medical Center, 
Chicago, which is a level one trauma center that sees over 
2,700 acutely injured patients each year. I am on call every 
fourth night and every fourth weekend.
    I have a continued exposure to the sadness which trauma 
causes to the citizens of this country.
    Trauma means injury, and trauma occurs as a sudden, 
unanticipated, interruption in life's routine. When you think 
about that, it is certainly true for the patient and the 
patient's family and loved ones, but it is also true for those 
who have to care for the injured, who must be able to react to 
a sudden interruption in their routine if the patient is to 
receive the best possible chance of surviving his or her 
injuries.
    We now know, through numerous studies, that it is the 
systems approach to care of the injured, which provides the 
constant state of readiness of not only the hospital but of the 
other system components as well, components which must work 
together in a coordinated manner to assure optimal outcome for 
the patient.
    Trauma is the most important, the most tragic and the most 
costly health problem in this country. I say this knowing full 
well what has preceded me during today's activities.
    Let me explain to you why I feel so strongly about these 
trauma related issues. Trauma's importance as a health care 
problem is based on some simple, factual observations. Trauma 
is the leading cause of death in the United States between the 
ages of 1 and 44 years, and the fourth leading cause of death 
overall. Trauma causes over half of childhood deaths, and more 
than three-quarters of teenage deaths. In the context of years 
of life lost, trauma exceeds that of cancer and heart disease 
combined. Remember, none of us are immune to this disease 
called trauma.
    The tragedy of trauma is very real. The longest walk I take 
is that short distance from the operating room or the emergency 
room to the waiting room to talk to a family who has just 
arrived only minutes before being aware that their mother or 
father, son or daughter, or some other loved one has been 
injured. And to have to inform them that the patient has died 
or may never see again or may never walk again is a compelling 
call to all of us to do something about the tremendous burden 
which is borne by so many, day after day, night after night and 
across this country in our emergency rooms and trauma centers.
    This sudden, unanticipated interruption in life's routine 
is all the more tragic when we recognize that much of it is 
preventable, and if there are life threatening injuries, that 
trauma care systems can make the difference. Today, only one 
fourth of our country are adequately covered by organized 
systems of trauma care. And lastly, the cost of injury in 
dollars is high as well. Recently, the estimated cost of trauma 
was over $214 billion a year. And with 150,000 deaths and 3 
individuals permanently disabled for every person who dies, and 
then having 11 million additional people reduced from the work 
force on an annual basis. You can see why this is such an 
expensive problem.
    In the early 1980s, some interesting data surfaced which 
confirms that we must devise a comprehensive approach to the 
problem of injury in America. Approximately half the people who 
die of trauma, die within moments of the incident. These are 
classified as immediate deaths, and there is nothing that we 
can do about these.
    The only way to reduce these immediate deaths is through 
prevention. And it is preventing the incident in the first 
place, or reducing the severity, so that they are survivable.
    The next group of deaths occurs within hours of the injury. 
These are classified as early deaths. We know that the 
implementation of trauma care systems can be reduce by 30 
percent of these deaths. It is here where rural America is so 
vulnerable. Because we know that trauma that occurs in a rural 
setting, without a trauma care system, is more than twice as 
lethal, for the same injury severity, as injuries incurred in 
an urban or suburban environment with a system.
    The last group of people who die from injury die of late 
deaths, days or weeks later from complex critical care issues. 
Research into the cause and treatment of infections, organ 
system failure, etc., can save lives in this group.
    Where does all this lead? In my opinion, it clearly leads 
to the need for improved funding for the Center for Injury 
Prevention and Control. It is only the Center which can bring 
together the expertise in acute care, injury prevention and 
epidemiology to design and evaluate interventions for 
implementation before and after the occurrence of severe 
injury.
    It is only the Center that can monitor the need and measure 
the impact of vitally needed trauma care systems. It is only 
the Center, which can encourage research and improve care of 
patients with traumatic brain injury and spinal cord injury, 
which is the leading causes of trauma deaths and permanent 
disability respectively.
    It is the Center where the renewal of attention to this 
profound health problem must continue.
    I want to personalize this a little bit. I know that you 
are from Florida. I do not know if you represent Sarasota or 
not, but my father died on Saturday, rather suddenly. He was 87 
years old. He collapsed at home. Fortunately, my sister was 
there. The paramedics arrived very promptly, they took him to 
the Sarasota Memorial Hospital. He could not be resuscitated. 
He went asystolic and died of a heart attack, I am certain.
    He was 87 years old, and in a couple of weeks, we were 
going to celebrate his life. That is a totally different 
problem than the problem of injury in America, where young 
people are affected, and if they are not killed, they are 
rendered permanently disabled. It is those types of tragedies, 
where you do not have the time to prepare for them, that makes 
trauma such a devastating problem, and one that has been 
underfunded for so long.
    I spoke before this committee, I believe it was this 
committee and another committee back in the late 1980s, when we 
were considering the Trauma Care Systems Development Act. That 
Act was passed. Congress allocated $60 million but it was only 
funded at $6 million. That legislation has now passed, and the 
CDC is the logical vehicle to try to continue that important 
effort. Because trauma systems is really the answer, once you 
are injured.
    Congress appears to have, is very attentive but appears to 
have short memory on some of these things that really need a 
great deal of attention and are just not getting them.
    I know you have heard from a lot of people today. There is 
an old surgical adage called Griffin's Fourth Law, where more 
people live off disease than die from it, something that is 
kind of interesting in terms of hearing everyone speak today. 
But, I certainly request that you consider this request for 
increased funding for the CDC for a very, very important health 
problem.
    Thank you, Mr. Chairman.
    [The prepared statement of Kimball Maul, M.D., follows:]

[Pages 219 - 226--The official Committee record contains additional material here.]


    Mr. Miller. Thank you.
    Yesterday, as I stated, we were there, and Mark Rosenberg, 
who is the head of it, spoke to us at lunch yesterday and was 
with us, in fact, most of the day. He has been before the 
committee too.
    Sarasota is a major part of my District, by the way, and 
Sarasota Memorial Hospital is a fine public facility that has 
great community support. But my area has more senior citizens 
than any other Congressional District in the United States.
    One thing they do have a certain degree of expertise at, 
they are not a Level One trauma care center----
    Dr. Maul. But, there has been talk about it, has not there?
    Mr. Miller. There has been, you are right. Some of the 
concern is the surgery provisions and such. It is not just the 
ER abilities.
    There has been discussion, because my home town is 
Bradenton, which is just 10 miles away. Basically they have to 
take them up to St. Pete or Tampa. In fact, last week I had 
lunch with the head of the emergency room at Tampa General 
Hospital, Tony Mitchell was down visiting, someone I have known 
for many years.
    But, there has been that discussion about our area not 
having a Level One trauma center.
    Dr. Maul. I am a senior reviewer for the American College 
of Surgeons Trauma Center Verification Program. I review trauma 
centers, at least one a month, for the college of surgeons. I 
am very aware of what is going on down there. Plus, I reviewed 
the paramedic program in Sarasota as a reviewer for the joint 
review committee. So I am very familiar with what goes on down 
there.
    Mr. Miller. I think they have a real expertise at taking 
care of senior citizens, more so than maybe the county 
hospital, which has a much wider variety. They do the best for 
what they have there.
    Dr. Maul. I just flew up from there yesterday.
    Mr. Miller. I am sorry to hear about your father's death.
    Dr. Maul. He was a remarkable guy. He and I went to Germany 
last month for a week. I had to speak over there at a couple of 
places, and he was in very good health, played golf twice a 
week and everything. But when your number's up, your number's 
up.
    Mr. Miller. I have an 87-year-old mother who has been 
confined to a nursing home for a year, and I am not sure she 
knows me when I visit her. Reaching 87 is a real milestone, and 
when your time's up it is easier to go quicker.
    Dr. Maul. That is right. Thank you very much.
    Mr. Miller. Thank you very much for your testimony. 
Appreciate it.
    We stand in recess until 2:00 o'clock.

                              ----------                              

                                           Tuesday, April 15, 1997.

                               WITNESSES

J. ALFRED RIDER, M.D., CHILDREN'S BRAIN DISEASES FOUNDATION
MICHAEL JOYCE
CHRISTOPHER CAMPBELL

    Mr. Bonilla [assuming chair]. Good afternoon. The 
subcommittee will come to order.
    My name is Henry Bonilla, of Texas. I will be chairing the 
subcommittee hearing of public witnesses this afternoon. Mr. 
Porter is recovering from a back injury. We wish him well and 
hope he comes back as soon as possible.
    We have a good list today of witnesses this afternoon. We 
would like to begin with J. Alfred Rider. Doctor Rider is here 
to talk about children's brain diseases. My understanding is 
that Doctor Rider will be accompanied by Christopher Campbell 
and Michael Joyce.
    Doctor Rider, before you begin, I just want to remind 
witnesses of two provisions in the Rules of the House. In 
addition to their written statement, witnesses must submit a 
curriculum vitae and a statement of Federal grant or contract 
funds they, or the entity they represent, have received. If 
there are any questions concerning the applicability of this 
provision or questions as to how to comply, please contact the 
subcommittee staff. I believe you are aware of that already, 
Doctor Rider.
    Dr. Rider. We have already complied.
    Mr. Bonilla. Also, Doctor Rider, before we begin, I would 
just like to remind all witnesses appearing today that in 
consideration of the time for all witnesses appearing, we would 
appreciate your statements being kept within the time allotted 
of five minutes. Any statements submitted for the record will 
be reviewed by every member of this subcommittee and all staff 
associated with this issue as well.
    Doctor Rider.
    Dr. Rider. Thank you very much. I am Doctor J. Alfred 
Rider, President of the Board of Trustees of the Children's 
Brain Disease Foundation. It is a pleasure to testify here for 
the 20th time in the last 19 years, since 1978, before your 
committee. I also have with me Mr. Michael Joyce, who is a 
member of the Board of Trustees, his wife Rosemary, who are the 
parents of a set of twins, Ian and Joey, with a late infantile 
form of Batten disease, and Mr. Christopher Campbell, his wife 
Kim, and their daughter Betsy, also with a late infantile form.
    I am speaking on behalf of the Children's Brain Disease 
Foundation, Batten Disease Support and Research Association, 
and thousands and children and their families who are affected 
with Batten disease. Specifically, I would like to address the 
need for continued funding at least at the 1994 level plus a 
modest increase for Batten disease. It is a neurological 
disorder affecting the brains of infants, children, and young 
adults. It occurs once in every 12,500 births. There are 
approximately 440,000 carriers of this disorder in the United 
States. It is the most common neurogenetic storage disease in 
children.
    Although there are four major types of Batten disease, the 
usual case is characterized by motor and intellectual 
deterioration, visual loss, behavioral changes, and the onset 
of progressively severe seizures, and termination in death in 
the vegetative state. This irreversible severe illness 
constitutes an enormous nursing and financial burden to 
families of afflicted children. Patients may live in this 
deteriorating state from 10 to 43 years.
    A major impetus to advance in the study of this disease 
occurred as a direct result of your committee's perseverance 
and interest which began to achieve fruition in 1991, when, for 
the first time, the committee recognized that not enough 
attention is being spent on Batten disease and they directed 
the National Institute of Neurological Disease and Stroke to 
expand its research in this direction. I am happy to say the 
NINDS heeded your request and solicited research grants. They 
established a special committee to review Batten disease grants 
that it felt the usual committees did not have sufficient 
expertise to make proper evaluations. Numerous applications 
have been received and a significant increase in money is spent 
on Batten disease. In 1994, $3.27 million was spent.
    As a direct result of this, there have been three major, 
major breakthroughs. There has been isolation of the gene 
defect in the infantile form on chromosome 1p32 in 1995. 
Shortly thereafter, the Consortium on Batten Disease isolated 
the juvenile form on chromosome 16p12.1. And just recently, in 
the last couple of weeks a group headed by Mark, Gardner, and 
Ingman have isolated the chromosome for the late infantile form 
on chromosome 11p15.
    Much needs to be done yet. The exact genetic defects have 
to be isolated. We must know what the enzyme defects do and we 
can then speak of definitive therapy by gene replacement and 
specific enzyme therapy.
    In view of these breakthroughs, we are disappointed that 
the funding for 1996 was approximately 22 percent less than 
1994. Consequently, we would like to suggest that the following 
wording be used in this year's appropriation bill: ``The 
Committee continues to be concerned with the pace of research 
in Batten disease. The Committee believes that the institute 
should actively solicit and encourage quality grant 
applications, and continue to take the steps necessary to 
assure that a vigorous research program is sustained.''
    The committee has requested that $3.4 million within the 
funds available to NINDS is spent on Batten disease research. 
This will allow for $3.27 million for continuation renewal 
grants, and $197,000 for new grants. It seems ironic that we 
have had these three big breakthroughs, yet the funding went 
down 22 percent instead of staying the same or increasing.
    [The prepared statement of J. Alfred Rider follows:]

[Pages 230 - 237--The official Committee record contains additional material here.]


    Dr. Rider. I think maybe Mr. Joyce would like to say a 
word, then Chris Campbell. Thank you, sir.
    Mr. Joyce. Back in 1988 was the first year that I came up 
to the Hill here with my sons Ian and Joe, my oldest son 
Connor, and my youngest son Andrew. We sat before William 
Natcher and a bunch of the other committee members and made our 
plea.
    It is ironic that we walked in and so little was known 
about this disease. We have spent several years fighting for 
the wording to get in and fighting with NINDS to finally start 
doing some qualitative research in this area. From 1991 to 
1995, two of the genes were found, so it proves that if they 
could go out and find the researchers that a lot could be done. 
I just find it appalling that, there is a new head of NINDS and 
I do not think this is exactly Doctor Hall's fault, for some 
reason all the momentum has been lost.
    Everyday we live with the fact of taking care of these 
children. Ian and Joseph walked into this hearing room and sat 
at the table and could talk back then. The progression of this 
disease is such that here they are at the age of 12 years old 
and they've been in this totally dependent state since they 
were 6 years old. The life expectancy was 10. There are not any 
documented cases of any of these children getting past the age 
of 10. I honestly believe that they are going to stay with us 
until we find a breakthrough, and that is the genetic cause of 
this disease, so then meaningful research can be done as a 
prevention and also as a treatment.
    Time is running out. I implore you to assist us in getting 
NINDS back on track. It just confuses me why, when their budget 
was raised 8 percent last year, we wind up with 22 percent less 
being spent on this research. We need your help to get them 
back on track, get them to put a new grant proposal back out 
there so we can get some meaningful research started back up on 
this thing. A day does not go by that I rest knowing that not 
enough is being done.
    If you look at the cost--we keep Ian and Joseph at home 
with us--you can not imagine the burden--it is not really a 
burden when it is your child--but the expense and all that and 
the heartbreak of this disease. But $150,000 a year is the 
figure being quoted now for taking care of children as 
dependent as they are. If you just look at the amount of money 
that is being spent on taking care of these children and the 
pittance that is being spent on trying to find a cause to stop 
this disease, we have our priorities out of whack. So I am 
asking you to please assist us in our endeavors. I know that in 
a couple more years we could have something if we can just get 
their attention.
    Mr. Bonilla. Mr. Joyce, I appreciate your testimony here 
today. Rest assured, it has an effect on what this committee 
may decide. My understanding from staff is that the funding is 
level, not declining, for this particular area, and I know that 
it could be interpreted in different ways. But I have an 11 
year old daughter and an 8 year old son and I can identify, 
perhaps not, but at least I do identify with what you're trying 
to accomplish here. I appreciate your appearing here today very 
much.
    Dr. Rider. Chris Campbell will now say a word.
    Mr. Bonilla. Sure. But we are way over time. Again, I am 
trying to be considerate of all witnesses appearing here today.
    Mr. Campbell. I am fine. Thank you.
    Mr. Bonilla. Thank you very much, gentlemen, for appearing.
    Mr. Joyce. Thank you, sir.
    Dr. Rider. I would like to have the staff look at those 
figures. I have gone over them very carefully and it is 22 
percent less.
    Mr. Bonilla. Thank you, Doctor Rider.

                              ----------                              

                                           Tuesday, April 15, 1997.

                                WITNESS

JOHN SABOLICH, NOVA CARE SABOLICH
    Mr. Bonilla. We now have John Sabolich, President of the 
Sabolich Research and Development. It is my understanding that 
a good friend of yours is a member of this subcommittee, Ernest 
Istook of Oklahoma.
    Mr. Sabolich. Yes, he is.
    Mr. Bonilla. Welcome. We would be pleased to hear from you 
at this time.
    Mr. Sabolich. Thank you very much. I understand you have a 
time limit constraint.
    Mr. Bonilla. We do have a five minute limitation, Mr. 
Sabolich, and that is only in consideration for all the 
witnesses appearing here today.
    Mr. Sabolich. Okay. Mr. Chairman, members of the 
subcommittee, I thank you for this opportunity today to speak 
to some of the exciting results of Federal investment in 
medical rehabilitation research that results in practical 
solutions; practical solutions to very expensive problems. My 
name is John Sabolich. I am a prosthetic orthotist biomedical 
researcher from Oklahoma City.
    In 1968, while studying orthotics and prosthetics at Duke 
University, I decided that focusing on research and development 
would enable me to help the very people I came to know working 
by my father's side. I determined that appropriate technology 
applied in a cost-effective manner would help amputees function 
better without pain and regain the ability to become 
mainstreamed and returned back to the workforce.
    To a great degree, we have already accomplished many of our 
goals. From our early privately sponsored research has now come 
a new generation of artificial limbs that are flexible, light 
weight, and anatomically contoured to the body of the patient. 
Persons who lose their limbs today now are among the most 
effective rehabilitated people with disabilities due primarily 
to advancements in prosthetic sockets and componentry over the 
last decade. Appropriate prosthetic care today routinely 
enables children to participate in sports, veterans to regain 
hope, and persons injured on the job to return to work in a 
relatively short period of time, as often as two to three 
months sometimes.
    Our field has done a fairly good job addressing issues of 
movement and mobility--running, et cetera. However, a major 
element of the central nervous system is really being ignored 
here, and that is the ability of sense of touch, feel, pain, as 
well as other senses. We applied for and received an SBR grant 
through the National Centers for Medical Rehabilitation 
Research at NIH to initially help amputees feel their feet and 
hands again. The goal of this research was to help amputees to 
sense pressure proportionally so they could walk and function 
in a more natural way and realize considerable energy savings 
while walking with more symmetry.
    As is often the case with research, the uses of the 
knowledge gained through this effort was much broader than we 
ever expected. I now strongly feel the greatest application of 
this technology will be in helping persons with diabetes and 
other diseases which cause impaired sensation to avoid further 
debilitating conditions including amputations. Sixteen million 
Americans have diabetes which according to the CDC accounts for 
$92 billion in direct medical costs and loss of productivity 
every year.
    We now realize that diabetes-related conditions are the 
leading cause of lower limb amputations, estimated to be at 68 
percent of all amputations performed annually. When a patient 
with diabetic sores or even just a red spot on the bottom of 
their foot walks, he usually doesn't even limp to compensate 
for his condition--he can't feel the pain. Rather, the patient 
continues to place weight right on the ulcer. This lack of 
feeling results in exacerbation of the patient's condition, 
usually leading to costly hospital visits and many times 
amputation.
    Consider the savings that could be realized by applying 
this low cost technology to help at-risk populations which 
number in the tens of millions. We recently have completed the 
phase I SBRA study funded by the NIDDK. Results indicate 
significant improvement in gate towards more protective walking 
patterns in that study.
    Similar technology can be applied to the staggering bed 
sore problem. An individual ulcer can now cost up to $80,000 to 
treat--and it is not only one time it is treated usually, it is 
several times. The annual cost estimated a decade ago was $7 
billion for this. You can guess what it would be now ten years 
later. I feel that this technology will contribute 
significantly to the prevention of such conditions.
    I strongly, strongly recommend continued full funding of 
the SBR research program. This program affords small 
independent researchers tremendous opportunity to more 
effectively help the people they serve in a manner that 
otherwise would be far, far beyond their reach. Furthermore, 
this investment can do much to help continue this practical 
applied research which can result in actual products to help 
people get well and potentially save billions in health care 
costs. It is essential to note that technology does not have to 
be expensive. However, by working smarter appropriate 
technology can actually reduce health care expenses 
dramatically if it is supported and made available to millions 
it is intended to benefit.
    I want to especially thank Congressman Istook for his 
ongoing commitment and leadership in support of rehabilitation 
research programs. Thank you very much.
    [The prepared statement of John Sabolich follows:]

[Pages 241 - 248--The official Committee record contains additional material here.]


    Mr. Bonilla. Thank you very much, Mr. Sabolich. We 
appreciate your appearing before the subcommittee today.

                              ----------                              

                                           Tuesday, April 15, 1997.

                                WITNESS

SUSAN P. BAKER, JOHNS HOPKINS SCHOOL OF HYGIENE AND PUBLIC HEALTH
    Mr. Bonilla. We now have Professor Susan Baker of the Johns 
Hopkins School of Hygiene and Public Health.
    Ms. Baker. Mr. Bonilla and members of the subcommittee, I 
am Susan Baker, a professor at the Johns Hopkins School of 
Public Health, and the founding director of our Center for 
Injury Research and Policy. Yesterday, some of you heard Doctor 
Mark Rosenberg at CDC talk about the National Center for Injury 
Prevention and Control. His National Center at CDC helps to 
fund our own center at Johns Hopkins and nine other centers 
across the Nation.
    Injuries kill and cripple more children and young adults 
than any major disease. They rob us of more pre-retirement 
years of life than cancer and heart disease combined. The 
dollar cost of injury was recently estimated at more than $214 
billion annually; that is ten thousand times the $20 million 
provided by the National Center to cover all extramural injury 
research, State programs, and the ten centers of excellence. 
Despite recent supplements earmarked for violence, there has 
been very little funding for unintentional or accidental 
injuries.
    Let me mention a few of the advances that have come about 
through CDC's extramural research program, despite its limited 
funding. To reduce the likelihood of hip fractures in the 
elderly, a hip protection device and safer floor materials have 
been developed. The critical elements of a successful smoke 
detector program have been identified in Oklahoma and used to 
develop a national model for fire prevention programs. A family 
of dummies has been developed at Ohio State for use in motor 
vehicle research so that the effects of crashes on people of 
all sizes can be better studied.
    Now what do I mean by limited funding? I mean only $2 
million a year for extramural research grants that have to 
address fires, and falls, and drownings, and poisonings, and 
road safety, plus trauma care and rehabilitation, and 
biomechanics. I mean only six to eight new grants each year 
from CDC in all of these fields combined. I mean only $5 
million a year for all of the CDC-funded State programs in 
injury prevention, so that many States do not have the funding 
and personnel that they need to implement proven strategies. 
And I mean no funding at all for training. The National Center 
has no money to meet its mandate to develop training programs 
in injury prevention. This means a graduate student who wants 
to enter the field today may find no tuition support or 
stipends.
    Our Center for Injury Research and Policy at Johns Hopkins 
offers courses in injury prevention, biomechanics, emergency 
services, aviation safety, and violence prevention. Our center 
develops information such as this recent monograph on injuries 
to children and teenagers, a project funded in part by CDC so 
that each State could understand its own injury problems. 
Research at our center includes long-term effects of head 
injury in bicyclists, and the effect of teenage passengers on 
teenage drivers and their risk of being in a fatal crash.
    If the funding shortage continues, we may face disasters 
like the current one with out of position children and air 
bags. At a national conference two weeks ago the question was 
raised, what went wrong? Why didn't we foresee that hazard? And 
everyone on the panel of biomechanical engineers and public 
health experts and auto manufacturers agreed that it might not 
have happened if we had had a critical mass of biomechanical 
expertise rather than a drying up of funds for basic injury 
research.
    Injury prevention depends on good science, which depends on 
adequate funding. When a single spinal cord injury can cost 
millions of dollars during a victim's lifetime, an investment 
in prevention will pay big dividends. Our world is full of 
hazards, generally of two kinds--the invisible ones that kill 
slowly, such as carcinogens and HIV, and the obvious ones that 
kill more quickly, such as house fires and falls. People worry 
most about the slow killers that they can not see. That worry 
is often reflected in appropriations. It is time to worry more 
about injuries, and not just to worry, but to do that which is 
in your power; namely, to provide more realistic funding for 
the leading killer of children and young adults. Thank you very 
much.
    [The prepared statement of Susan Baker follows:]

[Pages 251 - 257--The official Committee record contains additional material here.]


    Mr. Bonilla. Thank you very much, Ms. Baker.

                              ----------                              

                                           Tuesday, April 15, 1997.

                               WITNESSES

TRACY BOTSET
EMME ARONSON, NATIONAL ASSOCIATION OF ANOREXIA NERVOSA AND ASSOCIATED 
    DISORDERS

    We now have Tracy Botset and Emme Aronson, representing the 
National Association of Anorexia Nervosa and Associated 
Disorders. Welcome.
    Ms. Botset. Thank you.
    Mr. Bonilla. Are you Tracy?
    Ms. Botset. Yes, I am.
    Mr. Bonilla. Very good.
    Ms. Botset. I am Tracy Botset. I am a recovered bulemic and 
member of the Virginia Board of Directors of the National 
Association of Anorexia Nervosa and Associated Disorders, ANAD. 
I also serve as a community resource person for ANAD in my 
local area. My co-presenter is Emme Aronson, ANAD's National 
Celebrity Resource Person. Emme's highly successful book ``True 
Beauty'' emphasizes self-acceptance, being healthy, and the joy 
of living.
    We both educate people about the causes and dangers of 
anorexia nervosa, bulimia, and compulsive eating and what can 
be done to prevent it. We are deeply grateful to Chairman 
Porter and the other members of the subcommittee for inviting 
ANAD to testify on the importance of expanding programs, 
services, and research which are aimed at preventing our 
citizens from developing these deadly illnesses.
    ANAD is America's oldest non-profit organization dedicated 
to preventing eating disorders and providing free helping 
services for an estimated 7,000,000 females and 1,000,000 male 
victims and their families in the United States. Our Nation is 
increasingly aware that eating disorders are desperate 
illnesses that strike all segments of our population, ruin 
lives, and often cost tens of thousands of dollars to treat a 
single case. Eating disorders have one of the highest mortality 
rates of any psychiatric illness.
    Some studies indicate that the incidents of eating 
disorders is growing rapidly. This is not surprising given our 
culture's obsession with thinness and a billion dollar industry 
dedicated to weight loss that contribute to the innovation and 
progression of these destructive behaviors.
    Anorexia Nervosa, bulimia, compulsive eating, and the 
tendencies that lead to these illnesses are being documented in 
very young populations. Doctor Timothy Buritine, from the 
Medical University of South Carolina, surveyed 3,100 fifth 
through eighth grade students. Some 40 percent felt that they 
were too fat or wanted to lose weight even though less than 20 
percent were actually over-weight. One-third of these children 
said that they diet, 10 percent fasted, and almost 5 percent 
had vomited to lose weight. Others reported using diet pills, 
laxatives, and diuretics. Doctor Buritine has said, ``Any kid 
who has ever vomited or taken pills to lose weight has a 
problem.'' It is a fact that any kid who maintains these 
behaviors, any child, for any length of time runs the risk of 
stunted growth, both physically and emotionally. Large numbers 
of young people report their use and misuse of diet products 
which are sold over the counter without any restrictions. They 
are not aware that these potentially dangerous products can 
cause life-long problems or even death.''
    I was personally touched with bulimia myself. I have found 
that talking to anybody in society that is not aware of eating 
disorders defines it as a ``vanity'' illness. I can tell you 
firsthand it is not a vanity illness; it is a mental illness. 
The problems that I now face are digestive problems. An early 
problem in my recovery was Bells Palsy from forcing myself to 
vomit due to damaging nerves in one side of my face. I came 
back 98 percent, and very few come back that far, through 
steroid use and doctor office visits. This was very expensive 
to go through all the doctor visits that I have been through 
and my recovery. I just personally feel that it is very 
important that this is looked into and is funded sufficiently.
    Ms. Aronson. An ANAD ten year study documents that 43 
percent of victims report the onset of their illness by age 15, 
86 percent by the age 20, but only 50 percent report being 
cured. We now have evidence that large numbers of sufferers are 
in their 20s, 30s, 40s, or older.
    A recent survey by the Centers for Disease Controlrevealed 
that in 11,600 eighth through tenth graders 34 percent were actively 
using diet pills, 23 percent actively vomiting to reduce weight; 61 
percent of the girls and 28 percent of the boys were actively dieting 
to lose weight. A little shocking.
    For these reasons, we ask Congress to recommend that $10 
million be allocated to prevent eating disorders through 
education and public awareness programs. We ask another $10 
million to be allocated for research and that part of the 
research funding be allocated to study and promote primary 
prevention. Both in numbers of victims and cost of treatment, 
Anorexia Nervosa, bulimia, and compulsive eating are the major 
illnesses of our country which do not now, and never have 
received adequate understanding or support.
    Prevention programs available at an early age could be 
instrumental in reducing the incidents of eating disorders. We 
need to teach correct notions about nutrient, body development, 
and growth in an atmosphere which also encourages emotional 
health. We need programs designed to support the best of life 
decisions. Our young people need to learn self-respect, 
appropriate responses to both successes and failures, and ways 
of handling change which is often extremely difficult with a 
person with an eating disorder.
    Mr. Bonilla. Excuse me, Ms. Aronson. If you would just 
summarize. I am sorry to have to let you know that your time 
has expired. In consideration of other witnesses here, we just 
need to move on.
    Ms. Aronson. Absolutely. No problem.
    Mr. Bonilla. Whatever you submit for the record, I can 
assure you it will be reviewed in detail.
    Ms. Aronson. Great. I just want to be able to let you know 
that there is a serious, serious problem out there with a lot 
of children. Young kids starting at the age of five, six, going 
on up, saying that there is a lot of problems with am I fat. 
Eating disorders are on such an enormous rise right now that we 
do not have appropriate funding and we really, really do need 
to get funding in the very primary start in kindergartens, food 
groups, basic things. Teachers are not aware of things, doctors 
are not as aware of eating disorders as much as we would like. 
Cost is absolutely out of control. Thousands and thousands of 
dollars are spent for individuals trying to get health care.
    We really appreciate you listening to us. On behalf of ANAD 
and the group that we work with, we appreciate the time. Thank 
you very much.
    Ms. Botset. Thank you.
    Mr. Bonilla. Thank you very much for appearing today.
    Congressman Dickey is going to be chairing the remainder of 
the hearing.
    [Clerk's Note.--Information required pursuant to clause 
2(g)(4) of Rule XI of the Rules of the House of Representatives 
was not received from this witness or from an entity 
represented by this witness]
    [The prepared statements of Tracy Botset and Emme Aronson 
follows:]

[Pages 261 - 267--The official Committee record contains additional material here.]


                                           Tuesday, April 15, 1997.

                                WITNESS

REED V. TUCKSON, M.D., ASSOCIATION OF MINORITY HEALTH PROFESSIONS 
    SCHOOLS

    Mr. Dickey [assuming chair]. Our next witness is Doctor 
Reed Tuckson, President of Charles R. Drew University, 
representing the Association of Minority Health Professions 
Schools.
    Dr. Tuckson. Mr. Chairman and members of the committee, 
good afternoon. My name is Doctor Reed Tuckson. I am president 
of the Charles Drew University of Medicine and Science. I am 
here today in my role as president of the Association of 
Minority Health Professions Schools.
    Our association comprises the 12 Historically Black health 
profession schools that have collectively produced 60 percent 
of our Nation's African-American pharmacists, 50 percent of our 
Nation's African-American physicians and dentists, and 75 
percent of our Nation's African-American veterinarians. Given 
the mandate of our missions to serve the health needs of 
America's most challenged communities, we are proud of our 
schools' record of diversity in reaching out to other 
minorities and the legacy of committed service by our graduates 
who so often practice in inner-city and rural communities and 
whose patients are so often those without either public or 
without any insurance at all.
    Because of the nature of our work, the financial struggle 
to survive and to pursue excellence is a constant one for us. 
We do not have wealthy donors who are served by our hospitals, 
nor are we able to generate the impressive clinical revenue of 
other medical centers that are able to attract wealthy 
patients. However, despite this, we are proud of our hard-
earned and maturing expertise in struggling with and developing 
new knowledge about our Nation's most persistent health 
challenges. Because we experience first-hand the realities of 
the disproportionate health status of poor and minority 
Americans, we have learned much about the requirements for 
research and prevention and have developed important insights 
into the provision of cost-effective clinical management of 
them in a way that produces quality outcomes.
    In light of our missions and purposes, your committee has 
jurisdiction over four programs that are of particular interest 
to us. First, the Health Professions Disadvantaged Minority 
Training programs. There have been several reports that predict 
a general over-supply of physicians and other health care 
providers in our country. Unfortunately, this is not the case 
among all health care providers. Only 2 to 3 percent of 
African-Americans are privileged to be health providers. This 
Nation needs many more minority physicians, dentists, 
pharmacists, and veterinaries, and allied health professionals 
if we are to successfully address the needs of all Americans 
and particularly those living in under-served communities.
    The Health Professions programs supported by your committee 
are the only Federal initiatives that are designed to deal with 
acknowledged shortages among diverse populations and geographic 
areas. The Minority Center of Excellence Initiative, the Health 
Career Opportunity program, and other health professional 
programs recognize and support the institutions that have a 
track record and existing mission and commitment to addressing 
those shortages. The support provided for the Centers of 
Excellence program represents, very frankly, the difference 
between keeping the doors open or closed at several 
historically minority health professions schools.
    Our Association is disappointed that the President's budget 
recommended severe cuts to this program. We urge the 
subcommittee to restore fiscal year 1998 funding to the current 
level of $292 million.
    Second, the National Institutes of Health. We are committed 
to narrowing the health status gap among minorities when 
compared to the general population. Our institutions can 
achieve this goal by improving our research capabilities 
through continued development of our research labs, faculty 
improvement, and other learning resources.
    Three NIH programs specifically address developing the 
research infrastructure of our institutions. They are, first, 
the Research Centers at Minority Institutions program, for 
which we think funding should grow at the same rate asthe NIH 
does overall. The Extramural Facility Construction program is 
desperately needed to build adequate research facilities. The 
subcommittee is urged to provide $30 million for fiscal year 1998 for 
this program. We remain concerned about the administration of this 
program and hope that the designated 25 percent funding to go to 
institutions of emerging excellence will be made available as you have 
indicated in the past. The Minority Health Initiative in the Office of 
Research on Minority Health are also critical. We recommend support of 
those programs at a combined level of $80 million for them in fiscal 
year 1998.
    Three, the Centers for Disease Control. Mr. Chairman, 
minority populations of all ethnic backgrounds are at 
significantly increased risk of infectious disease, low birth 
weight, hepatitis B, and other such chronic disorders. Because 
of our relationship in our communities to these sorts of 
epidemiological challenges, we realize the importance of the 
partnership that we have with CDC. We recommend overall funding 
for CDC for fiscal year 1998 at the $2.75 billion level.
    Finally fourth, strengthening historically black graduate 
institutions and higher education. The strengthening of 
historically black graduate institutions program, Title III, 
Part B, is of extreme importance to our institutions. We would 
urge you with the strongest capacity that we have to strengthen 
these programs and the support for them for our institutions.
    In closing, Mr. Chairman, I have gone exactly five minutes 
and I have two pieces of testimony that we want to leave for 
the record.
    Mr. Chairman, we thank you for your patience and we thank 
this committee for its support of our programs.
    [The prepared statement of Reed Tuckson, M.D., follows:]

[Pages 270 - 276--The official Committee record contains additional material here.]


    Mr. Dickey. Thank you, Doctor Tuckson. As loud and clear as 
you were, I was wondering if you thought I was hard of hearing?
    Dr. Tuckson. Mr. Dickey, I will tell you, my only thing is 
that we are so enthusiastic about the work we do we just can't 
contain ourselves. [Laughter.]
    Mr. Dickey. I finally concluded that. My second point, do 
not leave yet, UAPB, University of Arkansas at Pine Bluff, I 
heard nothing in there about UAPB. Next time, you will put 
something in there, won't you?
    Dr. Tuckson. I got that message loud and clear.
    Mr. Dickey. That is my home town.
    Dr. Tuckson. Yes, sir. Thank you.
    Mr. Dickey. Thank you, Doctor Tuckson.
                              ----------                              

                                           Tuesday, April 15, 1997.

                                WITNESS

PHYLLIS WEBER, ASSOCIATION OF ORGAN PROCUREMENT ORGANIZATIONS
    Mr. Dickey. Next is Phyllis Weber. How are you, young lady?
    Ms. Weber. I am fine, sir.
    Mr. Dickey. You are the executive director of the 
California Donor Network in San Francisco, here representing 
the Association of Organ Procurement Organizations.
    Ms. Weber. That is correct, sir.
    Mr. Dickey. You have five minutes.
    Ms. Weber. I very much appreciate the opportunity to share 
with you and members of the subcommittee our views on the need 
of funding of activities which will increase organ and tissue 
donation.
    I congratulate the members of the subcommittee for the 
timing of this hearing. National Organ and Tissue Donation 
Awareness Week is April 20-26. Organ procurement organizations, 
OPOs, throughout the Nation will be conducting events to create 
greater awareness of organ and tissue donation.
    At our program in San Francisco, over 750 participants will 
attend an annual gathering honoring organ donor families and 
respecting organ donors. National Organ and Tissue Awareness 
Week, it is particularly timely that we discuss the important 
need for funding to increase donation.
    First, let me tell you a little bit about the work of the 
California Transplant Donor Network. Our service area covers 40 
counties in Northern and Central California, serving over 160 
hospitals. Last year, we managed 209 donors and recovered 698 
organs which were made available to patients for 
transplantation. The work we do every day saves lives. Our 
biggest challenge is to inform and educate the public about the 
success of transplantation and the importance of organ 
donation.
    In our area last year, one-half of our families approached 
about organ donation declined this option. An unfortunate 
statistic that is relatively consistent throughout the country. 
With a small amount of funding, organ procurement organizations 
can do a better job to change this statistic, and a better job 
needs to be done. Currently, over 51,000 patients are waiting 
for hearts, livers, lungs, kidneys, and other solid organs. 
Each day ten people die while waiting for a transplant. Thus, 
it is incumbent upon us, the Federal Government and the organ 
procurement community, to join forces and address the serious 
shortage of organs.
    The President's budget requests $3.891 million for fiscal 
year 1998 to support the activities authorized by the National 
Organ Transplantation Act, NOTA. These activities include the 
organ procurement and transplantation network, usually referred 
to as the OPTN, the scientific registry of transplant 
recipients, and donor awareness projects. ThePresident's 
request represents an increase in funding of $1.6 million. We would 
like to see $15 million available for NOTA authorized activities, an 
amount which is comparable to support provided by Congress for the 
National Marrow Donor Program.
    Additional funding for the Division of Transplantation 
would enhance our public and professional education efforts 
about organ and tissue donation.
    Mr. Dickey. Phyllis, excuse me. Am I hearing you right? The 
$3 million is what is proposed and you want $15 million?
    Ms. Weber. That is correct. We strongly support these 
efforts.
    Mr. Dickey. Good luck.
    Ms. Weber. Well, we are making an attempt here. Let me 
finish. Let me be clear, we strongly support the funding of the 
OPTN and registry. The OPTN matches organs to patients in a 
fair and equitable manner. The scientific registry is a jewel 
in the crown of medicine. It is unique in that it documents the 
status of every transplant patient. While we strongly urge that 
more funding be made available for donor awareness projects, we 
do not propose the funding come from these two important 
activities.
    Now a few words about the organization of which I have the 
honor of being president this year. The Association of Organ 
Procurement Organizations represents 49 of the Nation's 63 
OPOs. OPO represents and serves our members through advocacy 
support and development of activities that will maximize the 
availability of organs and tissues for transplantation.
    We are currently conducting a study regarding performance 
standards. We strongly believe that organ procurement 
organizations should be judged by how well they convert 
medically suitable potential donors into actual donors. We are 
collecting data from a variety of hospitals of different sizes. 
Analysis of the data will help us in developing a national 
standard for organ procurement performance. The study is being 
supported in part by the Division of Transplantation in HRSA 
and is an example of the cooperation between the Federal and 
non-profit sectors.
    We recognize that this subcommittee concerns itself with 
appropriations, but we also recognize that you are interested 
in program performance. Organ procurement organizations are 
being disadvantaged by the current HCFA performance standards. 
I would not take up your time with a description of the complex 
standards that are now in place. Suffice it to say, the 
standards are flawed and work to the detriment of organ 
procurement organizations. Therefore, we request that you 
direct HCFA to review their standards and to consult with the 
leadership of the industry in developing a more appropriate set 
of standards.
    Mr. Chairman, it has been a pleasure to share our views 
with you today. I will be pleased to answer any questions.
    [The prepared statement of Phyllis Weber follows:]

[Pages 280 - 286--The official Committee record contains additional material here.]


    Mr. Dickey. I have already asked my question. Thank you. 
You did a good job.
    Ms. Weber. Thank you.
                              ----------                              

                                           Tuesday, April 15, 1997.

                                WITNESS

KAREN HENDRICKS, COALITION FOR HEALTH FUNDING

    Mr. Dickey. Next, we have Karen Hendricks, president of the 
Coalition for Health Funding. Hello.
    Ms. Hendricks. Good afternoon, Mr. Dickey. The Coalition 
for Health Funding is very pleased to provide the subcommittee 
with a statement recommending fiscal year 1998 funding levels 
for the agencies and programs of the Public Health Service.
    The Coalition is a 27 year old alliance of 40 national 
health associations with a combined membership of 40,000,000 
health care professionals, researchers, lay persons, as well as 
consumers. The Coalition sincerely appreciates the strong and 
continued support that you and the subcommittee have given to 
health discretionary programs in the past years. A strong, 
effective public health endeavor holds great promise for 
improving the health of Americans and reducing the cost 
associated with premature death and disability.
    As the 20th century comes to a close, it is important to 
recognize the extraordinary contribution that public health has 
made. Since the turn of this century, life expectancy for 
Americans has increased from 45 to 75 years, fully 25 years are 
due to public health interventions. These include the adoption 
of better nutrition, housing, sanitation, occupational safety, 
and eradication of devastating infectious diseases such as 
polio.
    Today, we face many new challenges to the Nation's health 
and well-being, challenges that if not met will reverse in the 
next millennium many of the gains we have made in this century. 
We have recently seen the reemergence of diseases we thought we 
had defeated because we did not maintain adequate support for 
immunization, screening, and treatment programs despite the 
warning of public health professionals. The reemergence in the 
last decade of TB and measles are prime examples. In large 
part, because of the actions of this subcommittee, we are now 
once again making good progress in addressing these diseases. 
TB has abated in most communities but not all over the country 
as evidenced by just a few miles from this building. Current 
levels of immunization prevent millions of cases of measles, 
mumps, and other diseases that otherwise would cost 
approximately $1 billion a year in medical care.
    While the President deserves great credit for the 
leadership he has shown in increasing childhood immunization 
rates, his fiscal year 1998 budget request effectively cuts the 
Childhood Immunization Program at CDC by $25 million if 
Congress does not enact legislation to reduce the vaccine 
excise tax. This seems to be a pretty risky treatment of a 
program of such fundamental importance to the Nation.
    Other public health challenges face us as we end this 20th 
century, chronic diseases and conditions, many of which are due 
to unhealthy lifestyle choices. Our investment in NIH has 
identified a limited number of behaviors, many adopted in early 
life, which contribute to hundreds of billions of dollars in 
direct and indirect cost due to heart disease, cancer, 
diabetes, and intentional and non-intentional injuries. 
Investing in nationwide disease prevention and health promotion 
activities to reduce this largely preventable national burden 
will more than pay its way.
    We are facing now and in the next century the challenge we 
thought we largely conquered in the first half of the century--
new and emerging infectious diseases. Some public health 
professionals call this the coming plague and warn that we must 
be ready. We have already glimpsed the nature of the challenge 
in our battle against HIV and AIDS. Other examples are the 
recent, and for some deadly, food borne outbreaks of E. coli or 
hepatitis.
    Addressing these challenges will require adequate support 
of every major activity in the Public Health Service. We must 
invest in biomedical and behavioral research to develop the 
prevention and treatment tools. We must invest in core public 
health functions such as surveillance and prevention, some of 
which of necessity may reach beyond our national boundaries. We 
must invest in a health care delivery system that will 
effectively reach all individuals within our cities, our 
counties, and our State lines. We mustinvest in an adequately 
trained primary care and public health workforce that will staff the 
health care delivery system whether it is an inner-city public health 
clinic or a rural community health center.
    To address all these challenges takes a long-standing, 
adequately funded, committed effort at the Federal level. 
Disease and disabling conditions are national and increasingly 
international problems with a major implication for our 
continued economic leadership in the world. The Coalition for 
Federal Funding appreciates the difficult budget constraints 
facing this subcommittee.
    Mr. Dickey. Ms. Hendricks, you will need to begin wrapping 
it up.
    Ms. Hendricks. I am wrapping it up right now.
    Mr. Dickey. Thank you. I did not hear that tenseness in 
your voice.
    Ms. Hendricks. It was a little segue to the wrap-up. For 
fiscal year 1998, the Coalition is recommending a 12 percent 
increase above fiscal year 1997 levels to ensure that we 
address the critical needs of biomedical, behavioral, and 
health services research, as well as food and drug regulation, 
and other health services for vulnerable populations.
    Thank you.
    [The prepared statement of Karen Hendricks follows:]

[Pages 289 - 297--The official Committee record contains additional material here.]


    Mr. Dickey. One question quickly. You mentioned the coming 
plague. What is that?
    Ms. Hendricks. Emerging infectious diseases.
    Mr. Dickey. All of them together?
    Ms. Hendricks. A whole series that we just do not know a 
lot about--E. coli, Ebola, some of the viruses.
    Mr. Dickey. Okay. Thank you. You did a good job.
    Ms. Hendricks. Thank you.

                              ----------                              

                                           Tuesday, April 15, 1997.

                                WITNESS

ROBERT BALSTER, COLLEGE ON PROBLEMS OF DRUG DEPENDENCE

    Mr. Dickey. Doctor Robert Balster, Director of the Center 
for Drug and Alcohol Studies at the Virginia Commonwealth 
University, representing the College on Problems of Drug 
Dependence. How are you, sir?
    Mr. Balster. Just fine.
    Mr. Dickey. Would you like five minutes or less? 
[Laughter.]
    Mr. Balster. I would love five.
    Mr. Dickey. You can have five.
    Mr. Balster. It is good to be here again and testify before 
this subcommittee. I am Doctor Robert Balster, and I am the 
director of the Center for Drug and Alcohol Studies at Virginia 
Commonwealth University. I am the public policy officer and 
past president for the College on Problems of Drug Dependence. 
I am pleased to be here today to talk about budgets for NIH, 
specifically NIDA, and the Substance Abuse and Mental Health 
Services Administration. CPDD, which I represent, is the major 
national scientific society of drug abuse researchers.
    First, CPDD members want me to thank you and the members of 
the committee for the tremendous support that you have provided 
to NIH over the last two years. We know the subcommittee was 
faced with many tough decisions, and we sincerely appreciate 
the funding increase for NIH for 1996 and for this year as 
well. I assure that our membership is very well aware of this 
committee's leadership in support of the National Institutes of 
Health.
    Every member of this distinguished subcommittee, indeed, 
every member of Congress is well aware of the recently reported 
increase in drug use among our Nation's children. Of particular 
concern is the dramatic increase in marijuana use among our 
very young including pre-teens.
    The message we want to bring to you today is that drug 
abuse is a preventable behavior and drug addiction is a 
treatable disease. Drug addiction is certainly a social problem 
and a legal problem, but it is also a health problem. We 
believe that part of the explanation for the rise in drug use 
lies in a weakening of our Nation's resolve to implement the 
best prevention and the best treatment programs that research 
shows can work.
    The scientific opportunities that exist, if adequately 
supported, can help find solutions to our problems of drug 
abuse and addiction. We are extremely appreciative of the 
Administration's proposed $33 million increase for NIDA which 
we believe represents the President's awareness and concern 
about this complex public health problem. We are optimistic 
that the NIDA budget request will support the research that is 
needed to determine the most effective prevention and 
treatment. Indeed, most police and interdiction community 
experts agree that we must stem the demand for drugs if we are 
really to be successful in the long run.
    What we really need in order to produce significant and 
long-lasting changes in illegal drug use is a better 
understanding of the fundamental causes of drug abuse and 
addiction. We have learned a lot and our latest treatment 
advances reflect some of that knowledge. Some of what leads 
people to take drugs is inherited from their parents. The 
availability of drugs is also an important determinant of 
initial use but much less important to addicts who would do 
whatever it takes to get them. Something happens to the brains 
of people who take drugs, and we are learning a lot about this 
using the latest advances in neuroscience.
    Nonetheless, I think it is important to recognize that drug 
abuse is basically in its infancy. NIDA was established only 20 
years ago or so and it funds virtually all drug abuse research 
worldwide, certainly almost all of it in the United States and 
even 85 percent worldwide. There is practically no 
pharmaceutical industry work going on in the area of drug abuse 
research. This problem of an inadequate support base for drug 
abuse research has been recognized by ONDCP Director, General 
Barry McCaffrey. The proposed $33 million increase for NIDA is 
part of the President's national drug control strategy, which 
we support.
    I do not want to sound alarmist, perhaps I do, but 
scientists know that there are new even more powerful drugs 
than heroin and cocaine that could become a problem for us in 
the near future. The recent outbreak of abuse of 
methamphetamine is an example of this. We must be equipped 
scientifically to meet not only the challenges of the day but 
those of tomorrow.
    Researchers now have the ability to show in detail what 
drugs are actually doing to the brain when people use them; 
that is, we can actually visualize as it happens where drugs 
are binding in the brain. We have discovered the specific brain 
circuits that are involved in drug abuse and we are beginning 
to unveil the changes in activity patterns in these circuits 
during the processes of addition withdrawal. Researchers have 
identified genes for the receptor sites for practically every 
illegal substance. We are now working on using this knowledge 
to develop new medications. In our written testimony, we 
provided for you a number of areas of future research which we 
think are important to consider. To save time, we would not go 
into those now.
    I would like to turn now very briefly to the appropriations 
for SAMHSA. The SAMHSA supports the research and demonstration 
training programs that we think are really an important part of 
the national overall strategy. I need not tell you that there 
is an important gap between what is known about prevention and 
treatment effectiveness andwhat is actually being done in many 
communities across the country. The new treatment and prevention 
initiatives that emerge from NIDA supported research require community-
based programs to evaluate their effectiveness. This is done through 
the demonstration grants programs of CSAP and CSAT. They are very 
important. They were cut dramatically in 1996, but to the bare bones, 
and this has really been a very significant problem in curtailing their 
effectiveness.
    To conclude with our specific recommendations, we request 
that as an absolute minimum Congress provide the President's 
requested $33 million increase for NIDA as part of the national 
drug control strategy. Indeed, as it did last year, we hope 
Congress can do a little better than the President's budget 
request. If it does, we would like to see NIDA get its 
proportionate increase that is consistent with that strategy. 
For SAMHSA, we do not have a specific budget recommendation but 
really implore you to do whatever you can to support these RDA 
programs.
    Thank you very much for your consideration of our request.
    [The prepared statement of Robert Balster follows:]

[Pages 301 - 308--The official Committee record contains additional material here.]


    Mr. Dickey. Thank you, sir. We appreciate your good 
testimony.
                              ----------                              

                                           Tuesday, April 15, 1997.

                               WITNESSES

FRANCIS HARPER, THE DANA ALLIANCE FOR BRAIN INITIATIVES

    Mr. Dickey. Ms. Francis Harper, representing the Dana 
Alliance for Brain Initiatives. Welcome.
    Ms. Harper. Good afternoon. I am here today to testify on 
behalf of the Dana Alliance for Brain Initiatives, a non-profit 
organization of 155 leading neuroscientists, including five 
Nobel Laureates, committed to advancing awareness of the 
personal and public benefits of brain research. In the three 
years since its inception, the Alliance has worked to bridge 
the gap between scientific advances and public understanding of 
their implications for themselves and for society.
    Neuroscience has made outstanding progress in recent years, 
but its highest goal remains--healing the devastating brain 
diseases that steal the joy from so many lives. Already great 
strides have been made in developing effective treatments where 
there were none before and in refining the ones we have to 
improve their selectivity and reduce side effects. Dozens of 
new medications and new therapeutic procedures for treating an 
array of neurologic and psychiatric disorders have become 
available in the last few years alone, and at least 100 more 
are in human testing stages. For almost every disease of the 
brain there are compounds that are either available now or are 
in phase III clinical trials. Just in the past year, for 
example, new treatments were approved for amyotrophic lateral 
sclerosis, Alzheimer's disease, drug addiction, stroke, 
multiple sclerosis, schizophrenia, and depression.
    Several important scientific developments are driving this 
tremendous progress. Primary among them is the triumph of basic 
research on the brain, understanding how the normal brain 
performs its miraculous retinue of functions. Largely through 
the application of molecular biology techniques, 
neuroscientists have made great headway in unravelling the 
intricate processes by which the brain directs the activity of 
every organ in the body. This progress and the steady stream of 
advances that have been made in the neuroscience over the past 
decade are the direct result of investment by the Federal 
Government, often in areas of research that would not have been 
undertaken in the private sector.
    Private sector investment in research takes place in those 
instances where one corporation believes it can out-distance 
another by way of a new treatment or a new medication brought 
to the marketplace. Basic research, which fuels these 
developments, benefits everyone and therefore offers no 
competitive margin. Time and again, it has been Federal 
investment in basic research which has led to the development 
by the private sector of new therapies and treatments.
    As the Congress considers the seemingly insurmountable 
challenges of controlling costs, improving the quality of life 
for our citizens, and stimulating growth in our economy, we 
believe it is imperative and convincing that it considers the 
compelling benefits of medical research and its ability to pay 
back the costs of investment, because that investment will be 
paid back. There will be eventual reduction of costs as people 
live healthier, productive lives and the utilization demand for 
Medicare and Medicaid services diminish as a result in 
decreased chronic disability.
    While some may argue that this Nation cannot afford to 
devote more resources to medical research, the fact is society 
cannot afford to ignore the threat that disease and disability 
pose to people today and to future generations. Any short-term 
savings derived in the name of deficit reduction will pale in 
comparison to the long-term cost implications. Diseases of the 
brain and related disorders cost society more than $600 billion 
annually. As our population ages, health care costs will rise 
even more steeply.
    No one disputes that better medical treatment for our most 
devastating diseases and disorders will improve the quality of 
life for our citizens, not only for the afflicted but for the 
thousands of family members involved in their care. Medical 
research provides for greater economic growth, more exports, 
more high technology jobs. Whole industries have been built 
upon scientific advances in medical research, particularly in 
technologies such as lasers, magnetic resonance imaging, and 
PET scans. Time and again, innovations stemming from medical 
research have yielded long-term savings and improvement in the 
health and productivity of our Nation. With a strong sustained 
commitment, even more lives and more dollars can be saved.
    It is well known that this committee has shown enormous and 
continued support for medical research. And you are once again 
faced with tough budgetary decisions that will limit your 
ability to fund its growth. But is medical research a matter to 
be decided by a budgetary policy in this country? Or rather, is 
it to be one determined by a sound science policy that 
recognizes its social and economic benefits?
    The strength of any great Nation can be no greater than the 
health of its citizens. Government involvement in the care of 
its citizens is inevitable. Given this, we need to ask which 
business this Government wishes to be in, the disease business 
where the costs are chronic, escalating, and eventually 
crippling, or does the Government want to be in the research 
business where investment will lead to the prevention of 
disease and better therapies, and where the prospects for long-
term reduction in cost and the ability to sustain a healthy, 
productive citizenry are enormous?
    Thank you, Mr. Chairman.
    [The prepared statement of Francis Harper follows:]

[Pages 311 - 316--The official Committee record contains additional material here.]


    Mr. Dickey. Good question. Thank you very much.

                              ----------                              

                                           Tuesday, April 15, 1997.

                               WITNESSES

SUSHMA D. TAYLOR, CENTER POINT
JOY PARKER-JIMENEZ

    Mr. Dickey. Doctor Sushma D. Taylor. Is that close?
    Ms. Taylor. That is close enough, sir.
    Mr. Dickey. And Joy Parker-Jimenez.
    Ms. Parker-Jimenez. That is close enough too.
    Mr. Dickey. All right, pronounce it for me.
    Ms. Taylor. Sushma Taylor.
    Mr. Dickey. Sushma. All right.
    How do you pronounce your last name?
    Ms. Parker-Jimenez. Jimenez.
    Ms. Taylor. Good afternoon, Mr. Chairman. Thank you for 
this opportunity.
    Mr. Dickey. You have got four and a half minutes now. 
[Laughter.]
    Ms. Taylor. How about I trade you time for money? Less 
time, more money?
    Mr. Dickey. All right, that is fine.
    Ms. Taylor. We got a deal, sir. [Laughter.]
    Ms. Taylor. In that case, what I would like to do is go to 
the middle and have Ms. Parker-Jimenez speak to you for two 
minutes and then I will wrap up.
    Ms. Parker-Jimenez. Good afternoon, Mr. Dickey. I would 
like to share my experience as a chronic substance abuser who 
was in need of treatment, received it, and recovered.
    I was born in 1956, my parents divorced soon afterwards. 
When I was 10, my stepfather began to drink abusively, and at 
14 I began to use drugs. By 18, I was addicted to heroin. From 
1974 to 1991, I had a $500-a-day heroin habit, which I 
supported through criminal activities such as drug dealing and 
bank robbery. This equates to $800,000 in nominal terms. I was 
arrested 12 times, spent 12 years in Federal prison, for an 
estimated cost of $300,000. By 1991, I had cost the taxpayers 
over $1,100,000 in criminal justice and other social costs.
    In that year, I was sent to Center Point, Doctor Taylor's 
program, by the U.S. Probation Department in the Northern 
District of California. I was in desperate need of 
comprehensive treatment, and I received six months of treatment 
at a cost of $12,000.
    Since completing treatment in 1991, I have obtained a 
masters degree, have maintained full-time employment, voted in 
the last election, and paid over $20,000 in State and Federal 
taxes.
    I ask you to consider this: had I been given the 
opportunity for treatment much earlier in life, I may not have 
been the $1,100,000 financial burden I was. The fact is, there 
are not enough Center Points. You wonder if treatment works, is 
it cost-effective. Yes, it is. I know, because every day I wake 
up I am not sick from a heroin addiction, I am not robbing 
somebody, no cops are trying to knock down my door, and I am 
not sitting in the penitentiary, I am getting ready to go to 
work just like you are.
    For those of you willing to give people like me the 
opportunity to go from tax burden to tax payer, I thank you.
    Mr. Dickey. I am glad you do not equate coming before a 
subcommittee of Congress as that bad. [Laughter.]
    Mr. Dickey. You are one of the few to say it is better than 
where you were.
    Yes, ma'am.
    Ms. Taylor. I think Ms. Parker-Jimenez has summed it up. We 
know it is a tight fiscal year, but we would hope that you 
would give the SAMHSA budget your due consideration. We need 
the dollars in the public non-profit treatment sector. 
Treatment does pay. Large-scale studies have shown an 
investment return of $5 to $7 for every $1 invested in 
treatment. I just brought you living proof. I think that says 
it all. Thank you, sir.
    [The prepared statement of Sushma Taylor follows:]

[Pages 319 - 333--The official Committee record contains additional material here.]


    Mr. Dickey. Let me ask you a question. How much is the 
appropriation?
    Ms. Taylor. We are requesting a $10 million increase in the 
block grant. The Administration budget is $67 million. Increase 
in the demonstration, I would probably suggest a $20 million 
increase would be fine.
    Mr. Dickey. And how much would that total?
    Ms. Taylor. The current appropriation is $1.37 million in 
fiscal year 1997.
    Mr. Dickey. Add $20 million to that?
    Ms. Taylor. Yes, sir.
    Mr. Dickey. Okay. Thank you.
    Ms. Taylor. Thank you, sir.
    Mr. Dickey. Congratulations, ma'am.
    Ms. Parker-Jimenez. Thank you.
    Mr. Dickey. One day at a time.
    Ms. Parker-Jimenez. That is it.
    Mr. Dickey. All right.

                              ----------                              

                                           Tuesday, April 15, 1997.

                               WITNESSES

MARK S. LEVITAN
DONNA RICE, FOUNDATION FOR ICHTHYOSIS AND RELATED SKIN TYPES 
    (F.I.R.S.T.)

    Mr. Dickey. Next, Mark Levitan, Executive Director of the 
Foundation of Ichthyosis and Related Skin Types. He will be 
accompanied by Donna Rice, Vice President of the Board of 
Trustees. Welcome. And little Haley Rice.
    Ms. Rice. That is right.
    Mr. Dickey. Hi, Haley.
    Ms. Rice. Haley would like to give you these pictures.
    Mr. Dickey. I love that hat. I had a little girl 21 years 
ago. She is now a grown lady. Thank you, Haley.
    Proceed, Mark.
    Mr. Levitan. Mr. Chairman and members of the committee, my 
name is Mark S. Levitan. I am the executive director of the 
Foundation for Ichthyosis and Related Skin Types, or as we call 
it F.I.R.S.T., a not-for-profit organization. Testifying with 
me today is Donna Rice, Vice President of our Board. On behalf 
of our members, those with Ichthyosis and their families, I 
wish to thank the subcommittee for the opportunity to testify 
today.
    F.I.R.S.T. receives no grants or contracts from the Federal 
Government. We do receive approximately $2,500 per year from 
the Federal employees through CFC.
    Ichthyosis is a family of genetic skin diseases 
characterized by dry, thickened, scaling skin. Currently, there 
is no cure and there are no truly effective treatments. 
F.I.R.S.T. is dedicated to helping individuals with Ichthyosis 
and their families. Our most valuable resource is our network, 
and I am going to let Donna Rice talk to you about that.
    Ms. Rice. You have already met my daughter, Haley, who is 
five years old and is one of the estimated 19 children born in 
the U.S. each year with a specific type of Ichthyosis called 
lamellar. Haley was born six weeks early, which is relatively 
common for babies with Ichthyosis, so when the doctor said 
there is something wrong with your baby's skin, we were 
relieved.
    During the next two months that Haley spent in the 
hospital, we were to find out just how many things could be 
wrong with your skin. Severe dehydration at eight days of age 
due to excessive fluid loss through the skin reduced her birth 
weight to three and a half pounds and caused kidney damage that 
is still with her today. Within the next 24 hours she was 
diagnosed with septicemia, which is a generalized blood 
infection, and meningitis, both because her first barrier to 
infection, her skin, didn't function properly.
    Heroic medical intervention allowed Haley to come home to 
us and we really began to learn what it really meant to have 
Ichthyosis. Our goals at home were to keep Haley healthy, 
comfortable, and free from infection, a process that even today 
takes about four hours.
    By the time she turned two, she had already been 
hospitalized several times with serious infections, weighed 
only 16 pounds, and was developmentally delayed. Haley finally 
did learn to walk but her skin is still too tight and dry to 
allow her to run with her brothers, to hold a pencil for 
drawing, to close her lips for speech, or even to close her 
eyes while she is sleeping. As you can probably tell from her 
appearance here today, her struggles with malnutrition and 
growth are still unresolved. The physical aspects of Ichthyosis 
are mostly obvious, while the unseen blows to Haley's self-
esteem as she is stared at due to her appearance are just as 
real and ultimately may be more damaging.
    We still count ourselves and Haley among the lucky and we 
are very proud of her, proud that she survived when so many of 
our babies succumb to infection, dehydration, and SIDS. We know 
that we are lucky. We are lucky that we have access to health 
care, access to medical insurance and that we can also afford 
the out-of-pocket expenses to keep her healthy which last year 
alone exceeded $10,000, and to live in a school system that 
looks forward to having Haley there despite the cost of 
educating her.
    In the past five years, as a coordinator of our support 
network for F.I.R.S.T., I have spoken with parents who are not 
so lucky. I remember the young parents of a baby girl born with 
Harlequin Syndrome, the most severe form of Ichthyosis. This 
mother's disappointment that the frilly dresses she had 
imagined for her daughter were too rough for her skin was all 
too quickly replaced by the grief of her baby's death due to a 
massive infection. I remember the single mom of a two year old 
with congenital ichthyosa form of rithroderma vainly searching 
for a day care provider not bothered by her son's constant 
shedding of skin. Just this past week, I spoke with a mom in 
Wisconsin vainly trying to find the money to buy a cool vent so 
her son can play outside during recess. All because they heard 
the words, ``There's something wrong with your baby's skin.''
    Lastly, I would like to leave you with part of a letter 
sent from the Hoffmans in Kansas on their son Teddy's first 
birthday in January. ``Teddy is setting his own pace and the 
rest of us are learning to follow his brave lead. I do not know 
what the future will hold, but he has already taught us that 
life is not perfect but it is something to cherish. He is our 
love, our pride, and our joy.'' Two weeks later Teddy died.
    Mr. Levitan. Mr. Chairman, in 1992 this committee supported 
our request for a national registry and that exists today. For 
that, we thank you.
    Recent research efforts have yielded dramatic results such 
as the identification of the genetic mutation in lamellar 
Ichthyosis, the type that affects Haley Rice. Other researchers 
have used this information to repair the lamellar Ichthyosis 
defect in the laboratory.
    We are asking the distinguished members of this 
subcommittee for your continued strong support for medical 
research with particular regard to three areas.
    Mr. Dickey. Mr. Levitan, I am sorry but your time is up.
    Mr. Levitan. May I just finish?
    Mr. Dickey. Can you just submit that for the record?
    Mr. Levitan. I certainly will, sir. Thank you very much.
    Mr. Dickey. Thank you. Did you say 19 cases a year?
    Ms. Rice. There are 20 different forms of Ichthyosis. The 
most common form occurs in 1 in 250 individuals. The type that 
Haley has as well as some of the more severe types occur in 
about one to five per million live births.
    Mr. Dickey. Okay. Thank you. Bye, Haley.
    [The prepared statements of Mark Levitan and Donna Rice 
follows:]

[Pages 337 - --The official Committee record contains additional material here.]


                                           Tuesday, April 15, 1997.

                                WITNESS

JACK E. DIXON, OF THE JOINT STEERING COMMITTEE FOR PUBLIC POLICY

    Mr. Dickey. Next, Jack Dixon, Chair and Minor J. Coon 
Professor of biological chemistry, representing the Joint 
Steering Committee for Public Policy.
    Mr. Dixon. Good afternoon, Mr. Dickey. My name is Jack 
Dixon. I am Professor and Chair of the Department of Biological 
Chemistry at the University of Michigan Medical School, and the 
President of the American Society for Biochemistry and 
Molecular Biology. I am here today representing the Joint 
Steering Committee on Public Policy. This is a coalition of 
five life science societies representing more than 20,000 
biomedical researchers.
    My purpose today is to discuss with you and your colleagues 
the need for an adequate appropriation for the National 
Institutes of Health, the world's premier supporter of 
biomedical research.
    First, I want to express my gratitude for your support for 
the NIH over the years. Your support has led to profound 
advances in the treatment of human diseases which have directly 
benefitted every American family, and you have heard about some 
of those today. I know you share my belief that biomedical 
research is one of the best investments that the Federal 
Government can make with its public funds. Therefore, I am 
always mindful of the awesome responsibility you have placed 
upon those of us who are practitioners of biomedical research, 
and I appreciate very much your support and your trust.
    The Joint Steering Committee as well as virtually the rest 
of the life science community is supporting an appropriation 
for NIH in fiscal year 1998 of $13.894 billion, an increase of 
9 percent over last year's budget. This is an ambitious 
recommendation and is very justifiable on a variety of grounds. 
Examples abound about how biomedical research has helped the 
people of this country, and I will just cite a couple for you.
    Several decades ago, NIH funded research to investigate a 
family of enzymes known as acid proteases. We now know that the 
AIDS genome also encodes an acid protease which is required for 
the replication of that virus. The basic knowledge obtained on 
these proteases years before the AIDS epidemic suggested how 
these proteases function and this knowledge in turn provided a 
blueprint which allowed NIH-supported scientists, 
pharmaceutical firms, and the biotechnology industry to respond 
rapidly to design selective inhibitors which will block the 
function of the AIDS protease. These inhibitors along with 
other reagents are now responsible for the promising new data 
which indicate that the levels of the AIDS virus in some 
patients are now at undetectable levels.
    We often talk about treating diseases but seldom can I tell 
you about curing diseases. So, I am particularly gratified to 
tell you about a potential cure that seems to be within reach 
for people with Sickle Cell disease. NIH-supported scientists 
are experimenting with bone marrow transplants as possible 
cures for children with Sickle Cell disease, a painful and 
often fatal condition which affects approximately 1 in 400 
Afro-American children. In recent experiments, 73 percent of 
the children with Sickle Cell disease was successfully cured by 
this treatment.
    I, myself, have had the privilege to receive NIH support 
since the 1970s. I will just tell you briefly about some of my 
own work. In the early 1980s, NIH-supported scientists 
demonstrated that receptors such as the insulin receptor were 
turned on by phosphorylation and turned off by 
dephosphorylation. We began to study the enzymes responsible 
for turning off these receptors. Our basic research findings in 
our laboratory and in other laboratories provided the knowledge 
for pharmaceutical firms to use to design drugs to specifically 
block the turning off of the insulin receptor and thus to treat 
diabetes. I have been very fortunate to have the opportunity to 
study this family of dephosphorylating enzymes which has the 
potential for altering the course of human disease.
    It is truly undeniable that this work costs money. Sadly, 
some may even think that it costs too much money and that we 
can not afford to do it. I believe that, indeed, we can not 
afford not to do it. In fact, biomedical research is one of the 
most cost-effective ways to spend Federal dollars, saving in 
the long run vastly more money than is spent initially. Even 
the most conservative estimates on the pay-off for biomedical 
research show a 28 percent return in our investment. Looking at 
it in this light, a 9 percent increase in the budget doesn't 
seem so aggressive after all.
    Mr. Chairman, this concludes my comments. I want to thank 
you again for the opportunity to appear before you. I will be 
delighted to answer any questions you have.
    [The prepared statement of Jack Dixon follows:]

[Pages 347 - 353--The official Committee record contains additional material here.]


    Mr. Dickey. I have no questions. Thank you very much. You 
did a good job.
    I want to tell the audience by way of preview that Doctor 
Barry Lindley, from the University of Arkansas--where are you, 
Barry?--is coming up so you all stay around. You will want to 
hear anything that is coming from the University of Arkansas. 
[Laughter.]
                              ----------                              

                                           Tuesday, April 15, 1997.

                               WITNESSES

DOUGLAS H. MORGAN
LIZA SOLOMON, NATIONAL ALLIANCE OF STATE AND TERRITORIAL AIDS DIRECTORS

    Mr. Dickey. All right, Douglas Morgan, Chair, National 
Alliance of State and Territorial AIDS Directors, Assistant 
Commissioner, Division of AIDS Prevention and Control, New 
Jersey Department of Health; accompanied by Liza Solomon, who 
is a doctor of public health, Vice Chair and Director of AIDS 
Administration, representing the National Alliance of State and 
Territorial AIDS Directors. Thank you for coming.
    Mr. Morgan. Good afternoon. Thank you, Mr. Dickey. As you 
indicated, I am Douglas Morgan, the AIDS Director for the State 
of New Jersey, and Chair of the National Alliance of State and 
Territorial AIDS Directors, NASTAD. I am accompanied today by 
NASTAD's Vice Chair, Doctor Liza Solomon, who is the Maryland 
State AIDS Director. I want to describe for you the critical 
HIV prevention and care issues our programs are facing for 
fiscal year 1998.
    My written testimony details the funding levels we believe 
are essential for HIV prevention and surveillance programs at 
CDC and Ryan White Title II programs at HRSA. I want to touch 
on several key points which are of great concern to State AIDS 
directors nationwide. I will begin with HIV prevention where we 
have seen numerous Federal requirements tie the hands of States 
and their community planning groups and divert our resources 
and attention from primary HIV prevention efforts. Case in 
point, the availability of clean needles and syringes for 
injecting drug users.
    The Administration's proposed budget for fiscal year 1998 
HIV prevention is properly targeted to injecting drug users 
since 36 percent of all AIDS cases are linked to the sharing of 
non-sterile drug injection equipment. However, the 
Administration and the Congress are not providing States with 
the proper weapons to fight this war. The resources are 
insufficient and the program emphasis hampers our work by 
excluding access to sterile injection equipment as a primary 
HIV prevention strategy for injecting drug users.
    The Federal Government has funded six major studies which 
show that needle exchange programs are an effective means to 
reduce HIV transmission. Several of the reports demonstrate 
that these programs do not encourage drug use. NASTAD believes 
that revoking the Federal ban on funding for needle exchange 
programs and accelerating the growth of such programs in the 
U.S. are urgent public health priorities. States that choose to 
include needle exchange programs as a component of their 
comprehensive strategies to prevent HIV should have a full 
partnership with the Federal Government to address the problem.
    There are a number of critical HIV prevention challenges in 
need of additional resources. CDC provides funding to State and 
local health departments to conduct HIV prevention programs 
including HIV counselling and testing, partner notification and 
referral, individual level and community-based HIV prevention 
interventions, and focused prevention efforts targeting 
specific populations at risk. Based on assessment of State and 
local program needs and emerging issues, NASTAD requests an 
increase of $75 million in fiscal year 1998 for CDC HIV 
prevention cooperative agreements, and an increase of $30 
million in fiscal year 1998 for HIV/AIDS surveillance 
activities conducted by State and local health departments.
    I will turn now to our care and treatment programs, in 
particular, Title II of the Ryan White Care Act. The current 
Title II framework with core funding and a dedicated funding 
stream for AIDS drug assistance programs works. Both portions 
need attention and increased funding. Since fiscal year 1996, 
Ryan White Title II has included an earmark for the AIDS drug 
assistance funding, a dedicated appropriation that is efficient 
and should be continued. With the earmark, HRSA may not reduce 
the funding for the purposes of administration, evaluation, or 
technical assistance. Every appropriated Federal dollar is to 
be used for the exclusive purpose of providing FDA approved 
therapeutics to eligible persons living with HIV and AIDS in 
every State.
    Expanded access to therapies and advanced treatment 
diagnostics like viral load testing represent critical 
priorities for State Ryan White Title II programs nationwide. 
Now we need to make sure that the good news of recent medical 
breakthroughs can be realized among individuals who lack 
adequate health insurance. Further, the upcoming Federal 
guidelines in HIV therapy will soon dictate that patients start 
on therapy with a combination of drugs earlier in the disease 
in order to preserve immune function. Unfortunately, many State 
ADAPs nationwide are unprepared to offer this standard of care 
to eligible patients. These programs are already seeing 
exponential growth in demand and cost.
    NASTAD has tracked these trends closely and we have 
detailed these increases in the written testimony. In my own 
State of New Jersey, since adding the newest drugs to the 
State's ADAP formulary in October of 1996, monthly expenditures 
have already doubled from $375,000 to $750,000. Arkansas has 
seen a 15 percent growth in demand for AIDS drugs and a 
doubling of costs in the last six months.
    Mr. Dickey. What State?
    Mr. Morgan. Arkansas. Your home State, sir.
    Mr. Dickey. I just wanted to make sure the others were 
listening. [Laughter.]
    Mr. Morgan. The purpose of ADAP is, simply put, to provide 
treatments to prolong the lives of individuals with HIV disease 
who lack private insurance or who are not eligible for 
Medicaid. It is evident that many States will experience severe 
ADAP funding shortages or be incapable of providing a broader 
complement of coverage unless additional resources are secured.
    NASTAD requests an increase of $138 million in fiscal year 
1998 for Ryan White Title II, composed of $53 million for Title 
II core funding, and an additional $85 million for dedicated 
State AIDS drug assistance programs.
    Thank you, Mr. Chairman. Both I and Doctor Solomon are 
willing to answer any questions you might have.
    [The prepared statements of Douglas Morgan and Liz Solomon 
follows:]

[Pages 357 - 369--The official Committee record contains additional material here.]


    Mr. Dickey. No questions. Thank you.
    Mr. Morgan. Thank you.
                              ----------                              

                                           Tuesday, April 15, 1997.

                                WITNESS

VIRGINIA G. FOX, AMERICAN PUBLIC TELEVISION STATIONS

    Mr. Dickey. We have a special honor today in that the 
gentlewoman from Kentucky, Mrs. Northup will introduce our next 
witness.
    Mrs. Northup. Thank you, Mr. Chairman. It gives me great 
pleasure to introduce someone from Kentucky, someone that I 
have known for a long time and have great admiration for, and 
especially since I understand you are not allowing any 
questions.
    Mr. Dickey. That is exactly right.
    Mrs. Northup. So I will get everything I want to say in 
right now.
    It gives me great pleasure to introduce to you Virginia 
Fox. She joined Kentucky Education Television in 1968 and 
became its deputy executive director in 1975. In 1980, Mrs. Fox 
left KET to become president of the Southern Educational 
Communications Association. While there, she became the 
founding director of the Satellite Educational Resources 
Consortium, a provider of distance learning. Its members 
included KET star channels.
    She returned to Kentucky in 1988 as KET's chief operating 
officer and was named the executive director and chief 
executive officer in 1991. She has been one of the closest 
partners with KET in Kentucky's delivery of educational 
resources across our State. We look to her as somebody that is 
so knowledgeable about distance learning, about giving learning 
opportunities to people that live outside of easy access to 
learning centers.
    With that, I would like to introduce to you Virginia Fox.
    Mr. Dickey. And how many minutes have you decided she can 
talk?
    Mrs. Northup. Five. [Laughter.]
    Mr. Dickey. What an introduction.
    Mrs. Fox. I thank you so much, Mr. Chairman, for allowing 
that introduction from a lady I respect so much and am so 
pleased to see on this committee and in this city.
    Mr. Dickey. We are glad to have you.
    Mrs. Fox. Anyway, I am here representing the 179 public 
television licensees who provide universal access and equity in 
education to Americans. I know your network in Arkansas very 
well and Susan Howarth. In fact, the GED project I am going to 
talk about, we stole one of your adult education directors as 
one of the teachers.
    Mr. Dickey. Naughty, naughty. You should not do that.
    Mrs. Fox. Oh, yes, sir, but we are taking her to the whole 
country. And she is back. We did not keep her, we just stole 
her for a while.
    Mr. Dickey. All right. Good.
    Mrs. Fox. I am here to request support of the 
Administration's request of $325 million to the Corporation for 
Public Broadcasting for fiscal year 2000. As you know, CPB 
receives the Federal money that is actually appropriated two 
years in advance and then turns right around and gives it back 
to Arkansas, Kentucky, all the States in the Nation, about 75 
percent of the money. It leverages a great deal. It is the most 
important money that we get. The average match here, our match 
is about $10 for every $1 Federal dollar. But for tiny stations 
it may be 30 percent of their budget. It is vital to all of us.
    As proud as Kentucky is, Representative Northup, of the 
$10-to-$1 match that we provide to the Federal dollars, we are 
even more proud of how the return for this relatively small 
investment leverages the billions that go into education each 
year. We leverage it in three ways: (1) Fiscally. It is free of 
charge, it is there, it is everywhere; (2) Physically. We have 
universal coverage of the United States. In Kentucky alone, 
1,000,000 people do not have access to cable, as an example in 
one State; and (3) Motivationally. It is understandable, it is 
fun, it is attractive, and it is available.
    GED on TV is probably the clearest cut return on investment 
that we have made. Nearly 2,000,000 Americans since its 
inception have received a degree via GED on TV. I have got the 
statistics in the report, I would not give it to you. I can 
only tell you the Department of Labor would tell us that it 
leverages $10 billion a year added to the Nation's economy 
annually. In Kentucky, the students who have enrolled and 
passed their GED leverage $900 million back.
    We also are the size of a small college. Over 80,000 
Kentuckians have received college credit via KET, one-third of 
whom could not have done it otherwise. We know that from the 
surveys. In the United States it is 400,000 a year, 3,500,000 
since the inception. About an equal number go to college on the 
Internet via KET, via college credit courses done by Kentucky 
colleges and universities, and on the T-1 too, interactive 
video. I am using Kentucky examples because I know them best, 
but they are just examples. You know what is happening in 
Arkansas, Representative Dickey.
    The statistics are in the report on what we do directly for 
school students. But as a student who scored 99 percentile on 
verbal, which will not surprise you, when I graduated from high 
school and 8 percentile on math because the algebra teacher 
moved away after the first year of high school, I am deeply 
committed to distance learning and to equity in education.
    We have a bank of over 300 hours which 97 percent of the 
Kentucky teachers avail themselves of. We now know from studies 
you can throw all the money you want to at the schools, but the 
single most important factor is the preparation of the teacher 
in learning of the children.
    And the last, and I don't know how much time I have left--
how much?
    Mr. Dickey. You have 45 second remaining.
    Mrs. Fox. Okay. The last is the children. The latest Roper 
study, I am so excited about that, it demonstrated and showed 
that the children who watch public television are more apt to 
read a book afterwards, write a story, and they're more apt to 
use a computer at school. We have the image that we're elitist. 
Fewer children who watch public television as children have 
computers in their home but they are more apt to use the 
computer at school. I think that kind of says it all. We have 
finally made the turn of kids recognizing television and 
technology as a learning activity.
    I am going to wrap it up. We appreciate so much what you 
have done since 1968 for public broadcasting and earnestly 
solicit your support.
    [The prepared statement of Virginia Fox follows:]

[Pages 373 - 382--The official Committee record contains additional material here.]


    Mr. Dickey. I will tell Susan you did an excellent job.
    Mrs. Fox. Thank you, sir. So does she. Thank you.
    Mr. Dickey. Thank you.
                              ----------                              

                                           Tuesday, April 15, 1997.

                                WITNESS

EDWARD P. RILEY, RESEARCH SOCIETY ON ALCOHOLISM

    Mr. Dickey. Next, Doctor Edward Riley, Professor at San 
Diego State University, and Director of the Center for 
Behavioral Teratology at San Diego, representing the Research 
Society on Alcoholism.
    Mr. Riley. Good afternoon.
    Mr. Dickey. One day at a time. One five minutes at a time.
    Mr. Riley. I will try.
    Mr. Dickey. Will you do it?
    Mr. Riley. I will do it.
    Mr. Dickey. All right.
    Mr. Riley. My name is Doctor Edward Riley. I am the 
Director of the Center for Behavioral Teratology at San Diego 
State University. I am pleased to appear before you today on 
behalf of the Research Society on Alcoholism, a professional 
research group whose 1,100 members conduct basic and clinical 
research on alcohol and alcohol abuse.
    Over the past few months, you have heard about numerous 
diseases, some of which affect millions of Americans and others 
only a few thousand. Alcoholism is a tragedy that touches all 
Americans. One in ten Americans suffers from alcoholism or 
alcohol abuse, and their drinking impacts on the family, the 
community, and society as a whole. Alcohol is a factor in half 
of all homicides, half of all motor vehicle fatalities, one-
third of all suicides, and one-third of all accidental deaths. 
Every American is affected and all Americans bear the cost.
    Nearly 7,000,000 children live with an alcoholic parent, 
often in a chaotic home where they suffer physical and mental 
abuse. Ominously, a recent study reported that 30 percent of 
high school seniors drink heavily or binge drink at least once 
every other week.
    Alcoholism and alcohol abuse cost this Nation nearly $100 
billion a year. Prohibition did not solve these problems and 
current therapy is simply not good enough. Only research holds 
the promise of effective prevention and treatment. However, 
alcohol research is woefully under-funded. The National 
Institute on Alcohol Abuse and Alcoholism, NIAAA, funds over 90 
percent of all the alcohol research conducted in the United 
States. For 1997, the budget of NIAAA is $211 million. We are 
committing to alcohol research only $2 for every $1,000 lost 
from alcohol abuse and alcoholism.
    Mr. Dickey. Excuse me. Are you saying this is all for 
research?
    Mr. Riley. No. The $211 million is NIAAA's budget, both 
intramural and extramural.
    Mr. Dickey. How much did we spend last year on research?
    Mr. Riley. Slightly less than that. We got an increase this 
year.
    Mr. Dickey. This is trying to find a cure?
    Mr. Riley. This is trying to do basic research of cure, 
treatment, prevention programs.
    Mr. Dickey. Okay. Thank you.
    Mr. Riley. This is proportionally less than spent on other 
diseases that have a similar economic impact, such as cancer 
and heart disease. In 1996, NIAAA will fund just 21 percent of 
all their grant applications. In 1997, they are going to fund 
fewer than that. The comparable figure for the rest of NIH is 
28 percent.
    This inability to fund outstanding grant applications comes 
at a time of unprecedented opportunities for alcohol research. 
Scientists funded by NIAAA in the collaborative study on the 
genetics of alcohol, the COGA project, have identified discreet 
regions on the human genome that contribute to the 
inheritability of alcoholism. This is the first success in the 
genetic mapping of a complex biological and behavioral disorder 
and it must be followed by expensive labor-intensive efforts to 
pinpoint and identify the genes of interest. Health providers 
therefore may one day be able to identify individuals at risk 
and target these individuals for prevention. Genetic research 
is also going to accelerate the rational development of drugs 
to treat alcoholism.
    One of the most promising areas of alcohol research is in 
the field of neuroscience and how alcohol affects the brain. 
For example, Naltrexone, a drug that blocks the brain's natural 
opiates, reduces the craving for alcohol and helps maintain 
abstinence. Ongoing clinical trials will help determine which 
patients benefit from this treatment and how the drug can best 
be used. Other drugs with advantages over Naltrexone are now 
being developed and tested.
    One of the most tragic consequences of alcoholism is Fetal 
Alcohol Syndrome. FAS is a permanent condition characterized by 
facial anomalies, small size, mental retardation, and 
behavioral problems. It is probably the most common preventable 
cause of mental retardation in the United States. My own 
research has involved both animal models and children with 
Fetal Alcohol Syndrome. Using magnetic resonance imaging, brain 
wave recordings, and behavioral assessments, we have identified 
in children specific changes in brain structure and function 
that result from heavy prenatal alcohol exposure. A better 
understanding of alcohol's effects on the developing brain 
should allow us to better target the treatment of these exposed 
people, allowing them to maximize their potential. An 
understanding of risk factors will help us target and prevent 
Fetal Alcohol Syndrome.
    Alcohol abuse and alcoholism are devastating problems of 
national importance. Alcohol research has now reached a 
critical juncture and the scientific opportunities are 
numerous. With the continued support of this committee and the 
Congress, I am optimistic that we're going to see significant 
advances in the next few years.
    The Research Society on Alcoholism request that funding for 
NIAAA in fiscal year 1998 be increased by $31.7 million, a 15 
percent increase, to $243.6 million. This request balances the 
impact of this disease, the abundant research opportunities, 
the low success rate of grant applications at NIAAA, and well-
known fiscal constraints. We deeply appreciate your past 
leadership on behalf of the NIH and urge your continued support 
in 1998. Thank you for your consideration. I would be happy to 
answer any questions.
    [The prepared statement of Edward Riley follows:]

[Pages 386 - 393--The official Committee record contains additional material here.]


    Mr. Dickey. Where is the best known center for alcohol 
study?
    Mr. Riley. My gosh, I would have to say Scripps because I 
am there.
    Mr. Dickey. Where is that?
    Mr. Riley. In San Diego, Scripps Institute.
    Mr. Dickey. Okay. Great work.
    Mr. Riley. Thank you.
                              ----------                              

                                           Tuesday, April 15, 1997.

                                WITNESS

BARRY D. LINDLEY, THE COALITION OF EPSCOR STATES

    Mr. Dickey. Okay. Now we hear from the University of 
Arkansas. Doctor Barry Lindley, Vice Chancellor for Academic 
Affairs, Dean of the graduate school, and Professor of 
physiology and biophysics, University of Arkansas at 
Fayetteville, Arkansas, where my daughter is going to school, 
representing the Coalition of EPSCoR States. Welcome, Barry.
    Mr. Lindley. Thank you, Mr. Dickey, and thanks to the 
committee for this opportunity to speak on behalf of the 
Coalition of EPSCoR States. I am from the University of 
Arkansas for Medical Sciences where we are proud of our sister 
campus, the University of Arkansas at Pine Bluff, and my 
friends Lawrence Davis, Mary Benjamin, William Willingham. We 
work with them. We are proud of our area health education 
center for Southeast Arkansas which has its headquarters there 
in Pine Bluff. We are appreciative of the help you have been in 
strengthening all the programs throughout Arkansas.
    Mr. Dickey. You would have to say that since I am the 
acting Chairman today, wouldn't you?
    Mr. Lindley. No, but because we really appreciate it.
    We have crafted and pruned some words which you have in 
written testimony. I am going to touch on just a few points.
    First of all, I am here specifically to speak on behalf of 
the program called IDeA at NIH, the Institutional Development 
Awards. It is the NIH brand of EPSCoR programs. EPSCoR is a 
program that was first started through the National Science 
Foundation and dedicated to the proposition that strengthening 
science in the country meant developing talent throughout the 
country, not just on the East Coast or the West Coast, but on 
the Middle Coast as well, and that scientists representing the 
talent available in these places needed to build environments 
so that their talent could flourish. It is a program designed 
to provide funding to move them to competitive status so that 
they can add to the strength of the nationwide enterprise.
    It is a merit-based program, peer-reviewed program. It 
generally requires at least 1-for-1 match which comes from 
institutions, sources through their own States, through, in our 
case, clinical income, or what have you. It is a good 
investment.
    I want to mention briefly what it has meant specifically 
for Arkansas. Some of the other members of the committee have 
programs in their own States. Mrs. Northup has a program in 
Kentucky, Representative Istook has one in Oklahoma. In 
Arkansas, in 1990, we ranked 43rd in the country in NIH 
funding. Traditionally, we had lagged way at the bottom. In the 
last ten years, we have increased our research awards 
eightfold, so that now we have moved into the middle third of 
the medical schools in the country. This is in part due to 
support through EPSCoR types of programs. We received support 
to build our programs in aging which have now paid off with a 
$25 million grant from the Donald W. Reynolds Foundation, the 
largest private gift to higher education in Arkansas history.
    Our program in neuroscience, which got started with EPSCoR 
support, now has received a competitive large program project 
grant from the National Institutes of Health. We currently have 
support for a center on opportunistic infections. You have 
already heard a couple of speakers today talk about the 
problems of patients with skin disorders where they are now 
much more susceptible to infections, patients with AIDS, 
patients receiving bone marrow transplants for cancer 
treatment, patients with cystic fibrosis. Many diseases create 
a burden of unusual susceptibility to infection on the part of 
the patient.
    We have developed a center for opportunistic infections to 
apply a wide range of basic and clinical research. We feel 
confident that this program, which has been supported by IDeA, 
will pay off nationally. Our research on tuberculosis, for 
example, already is part of an international team. We are 
drawing about $100,000 a year in license income for molecular 
biology techniques we developed to identify tuberculosis 
organisms. It has been a great thing for Arkansas and it has 
been a great thing for the country and for health around the 
world.
    There is a pending request by the President for $2.6 
million for the NIH IDeA program. The NIH target five years ago 
when they laid out a time line for development of this program 
called for $17 million for the program in this coming fiscal 
year. We are requesting an additional $10 million, for a total 
of $12.6 million within NIH funding to continue to build this 
way to exploit the talent that is present in these States which 
historically have been poorly represented in NIH funding.
    We appreciate the general support for biomedical research 
that this committee has supported, that you have supported 
personally, that the Congress has supported. Any consideration 
that can be given to strengthening the NIH IDeA program would 
be very much appreciated. I would be glad to answer questions. 
I thank you for the opportunity to appear.
    [The prepared statement of Barry Lindley follows:]

[Pages 396 - 404--The official Committee record contains additional material here.]


    Mr. Dickey. The only question I have is, do you want any 
more than my 100 percent support?
    Mr. Lindley. All your friends, too.
    Mr. Dickey. All right. I will go after it. Thank you, 
Barry. Have a good trip back.
    Mr. Lindley. Thank you.
                              ----------                              

                                           Tuesday, April 15, 1997.

                                WITNESS

HENRY A. FERNANDEZ, ASSOCIATION OF UNIVERSITY PROGRAMS IN HEALTH 
    ADMINISTRATION

    Mr. Dickey. Henry Fernandez, President and Chief Executive 
Officer for the Association of University Programs in Health 
Administration. You have five minutes, sir.
    Mr. Fernandez. Thank you, Mr. Dickey. Good afternoon and 
thank you for your patience this afternoon. I am Henry 
Fernandez and I am the President and CEO of the Association of 
University Programs in Health Administration. You will be 
pleased to know those are 105 of the premier universities 
throughout the United States that prepare what we think of as 
the health care generals, the folks who run the health care 
system. While unfortunately Pine Bluffs is not necessarily a 
member of our Association because it does not have a health 
administration program, Arkansas at Little Rock does and, in 
fact, it has been the premier program providing health care 
executives throughout all of the wonderful State of Arkansas.
    I thank you for the opportunity to spend a little bit of 
today with you.
    Mr. Dickey. Excuse me, Mr. Fernandez. What do you say we 
don't have a program for?
    Mr. Fernandez. You do not have a health management program 
at the master's level at Pine Bluff. But I suspect, 
Representative Dickey, that I soon will be hearing from Pine 
Bluff and I will be delighted to engage them.
    Mr. Dickey. Thank you.
    Mr. Fernandez. Mr. Dickey, when I testified before your 
subcommittee last year, I described the Public Health Service 
as a three-legged stool. One leg of the stool is research and 
is represented by the National Institutes for Health and the 
Agency for Health Care Policy and Research, AHCPR. The second 
leg is prevention and is represented by the Centers for Disease 
Control and Prevention. The third leg, which is the focus of my 
inquiry today with you, is the provision of services, and that 
is best achieved through the programs of the Health Resources 
and Services Administration, HRSA. Last year the subcommittee 
provided national leadership and a sustaining level of support 
to that third leg, as it provided to the other two, and ensured 
that the Public Health Service could continue to function well 
and effectively.
    I am disappointed to tell you, Representative Dickey, that 
the proposed budget for fiscal year 1998 removes that third leg 
that maintains the Public Health Service balance and the 
capacity to effectively meet its mission. It may well be that 
in Washington a two-legged stool can stand up, but I do not 
think it can in Arkansas and certainly not in New York where I 
come from.
    The budgetary decision reflected in this proposal is ill-
advised and short-sighted. It is a well known fact that the 
amount and volume of the training and services that are 
provided by HRSA far exceed the relatively small amount of 
money appropriated for health professions and nursing education 
services. The other professions will speak for themselves when 
they come before you and the subcommittee this week and next. 
For my part, I would like to talk to you about the importance 
to you and to everyone of your constituents in developing the 
best qualified, most competent, most highly trained health care 
managers we possibly can.
    We are all aware of the Federal support for health care, 
well over $300 billion. When you take into account on top of 
that what is done privately through your constituents and 
insurance, it comes out to a $1 trillion industry. With that 
much at stake, with one-seventh of the economy hanging in the 
balance, how much money does our Federal Government spend to 
train men and women who run hospitals, long-term care 
facilities, managed care programs that deliver services to your 
constituents? In the current year, it will spend $1.1 million. 
However modest that amount is though, we appreciate and value 
the funding that we have received and believe that we have 
effectively applied it to benefit our health care delivery 
system. In fact, we are grateful for this subcommittee and your 
colleagues in the Senate for their past support.
    We strongly believe that our Government is losing a real 
opportunity to improve health care in higher education by not 
doing more in this area. But we understand the realities. Our 
graduates run the largest and most complex health care 
facilities in the country; however, they also run the rural 
clinics and hospitals and inner-city facilities. Nowhere is the 
need for better management more important than in those 
facilities that attempt to effectively provide for the 
chronically underserved.
    With changes enacted by Congress in the reauthorization of 
these programs in 1992, there is a strong funding priority 
placed on sending trainees to health care organizations that 
serve those who are not otherwise well served by our health 
care system. Because of your leadership, health administration 
trainees provide important services while they learn and 
actually make a contribution to the strength of our health care 
system. They help to promote a smooth running system today 
while they are learning for tomorrow.
    As you know, Mr. Dickey, the proposed budget places health 
professions and nursing education programs into five clusters. 
If you review them carefully, if all of last year's 
appropriations were included in this year's new cluster, it 
would total $82 million. But it does not. Instead, over 90 
percent has been eliminated, virtually ensuring the abolition 
of support for effective health management by the Federal 
Government.
    Mr. Dickey, this subcommittee has demonstrated great wisdom 
through its support of the health professions and nursing 
education programs. All of us who are involved in the programs 
are grateful for your support. An existing cost-effective, 
carefully balanced, and well-functioning system will derail if 
the President's proposal is at all considered. Today we ask you 
once more to exercise your leadership and wisdom and do what is 
right for your constituents and for an effectively managed 
health care system. The Association of University Programs in 
Health Administration supports the recommendation of the Health 
Professionals and Nursing Education Coalition that the Title 
VII and Title VIII programs be funded at $3.2 million for 1998.
    Mr. Dickey. Mr. Fernandez, you are going to have to 
summarize and then put the remainder of your statement in the 
record.
    Mr. Fernandez. I will summarize. If you do this, you will 
ensure the continued necessary Federal presence in health 
management education. If you accept the proposed budget, it 
will effectively be the death knell of the Federal support for 
health management.
    We appreciate the wisdom that this committee and the 
Congress has in the past shown in supporting these programs and 
we encourage you to continue to exercise your independence and 
promote quality health care education programs in health care 
delivery. The support our Government has made to improving the 
skills of its professional managers has played a significant 
role in making the U.S. health care system with all its faults 
the envy of other nations. Now more than ever the system needs 
your continued support. Thank you very much.
    [The prepared statement of Henry Fernandez follows:]

[Pages 408 - 415--The official Committee record contains additional material here.]


    Mr. Dickey. Thank you very much. Come back and see us.
    The subcommittee stands in recess until 10:00 a.m. tomorrow 
morning.
                                         Wednesday, April 16, 1997.

                                WITNESS

CAROLYN ROBINOWITZ, M.D., AMERICAN ACADEMY OF CHILD AND ADOLESCENT 
    PSYCHIATRY

    Mr. Dickey. The subcommittee will come to order.
    As we begin this morning's hearings I want to remind 
witnesses of two new provisions in the rules of the House. In 
addition to the written statement, witnesses must submit a 
curriculum vitae and a statement of Federal grant of contract 
funds they or the entity they represent have received.
    If you have any questions concerning the applicability of 
this provision or questions as to how to comply, please contact 
the committee staff, and not for sure the acting committee 
Chairman.
    Carolyn Robinowitz, Dr. Robinowitz, Associate Dean for 
Students, Georgetown School of Medicine, representing the 
American Academy of Child and Adolescent Psychiatry.
    Welcome. You have got five minutes.
    Dr. Robinowitz. Thank you, Mr. Chairman.
    I am Carolyn Robinowitz, I am a child and adolescent 
psychiatrist. I am the Associate Dean at Georgetown University 
School of Medicine. I am representing the American Academy of 
Child and Adolescent Psychiatry.
    The Academy appreciates this opportunity to testify before 
you today regarding the 1998 appropriations for the National 
Institute of Mental Health and the Substance Abuse and Mental 
Services Administration. The American Academy of Child and 
Adolescent Psychiatry is a national professional association of 
over 6,300 child and adolescent psychiatrists.
    Now, we are physicians who have completed a general 
psychiatry residency as well as a two year residency in child 
and adolescent psychiatry. Our work is designed both to promote 
healthy development of children and to evaluate, diagnose and 
treat children and adolescents and their families who are 
afflicted by disorders of feeling, thinking or behavior.
    Child and adolescent psychiatrists are uniquely qualified 
to integrate knowledge about human behavior and development 
from the psychological, biological, familial, social and 
cultural perspectives. We use scientific, humanistic, and 
collaborative interdisciplinary approaches to diagnose this 
treatment as well as the promotion of mental health.
    Research into the disorders of childhood and adolescence is 
a very important part of the Academy's mission. Over the years, 
we have been pleased at the expansion of research as we learn 
more about the development and functioning of children and 
adolescents. It was with the NIMH and the Institute of Medicine 
that we really recognized and defined the shortage of 
researchers investing early life emotional disorders, 
prevalence, reasons for onset and treatment.
    As recently as 10 years ago, both of these organizations 
reported the critical need for expanded research training 
programs, enhanced initiatives for practitioners to go into 
research, and for a consortium to generate and implement this 
program. The response to this has been very good, and we can 
report to you a great deal of satisfaction at what really are 
beginning steps.
    After only three years of the five year plan, which was 
Congressionally requested, the research on child and adolescent 
mental disorders, the basic behavioral and biomedical research 
focusing on issues of development increased by 179 percent, 
while receiving just 33 percent of targeted funding. And 
funding for research training similarly, the increase was 188 
percent, but only 70 percent of what had been recommended in 
the five year plan.
    Now, maintaining existing projects and momentum for new 
research is so essential that the Academy has implemented an 
aggressive campaign to increase the number of researchers to 
broaden diversity of their projects and to give technical 
assistance for research support. Research is a long pipeline. 
You first have to get students, usually medical students, 
interested in research and then specifically interested in 
behavioral neuroscientific research and then keep this going. 
And as opposed to a one on one direct relationship, you know 
that you have to nurture a lot of people to produce one good 
researcher and a certain amount of good research.
    I will highlight at a later point some of our student 
presentations, because I think they are very interesting to see 
what medical students working with mentors who are established 
researchers are doing, and how this bodes well, I think, for 
the future. I want to highlight the goals for the future for 
the Academy and for our research.
    The first is to develop and sustain a critical mass of 
basic and clinically oriented researchers focusing on mental 
disorders that affect children and adolescents. The NIMH's K-12 
Young Investigator Development Program has allowed child and 
adolescent psychiatrists to move from a small research program 
to a major research center for five years and then back again 
to bring back their knowledge and experience and to nurture and 
mentor new people. That has been extraordinarily effective, and 
we can begin to see the results of that already.
    Secondly, we would like to stimulate a range of basic 
science and clinical research at the frontiers of scientific 
inquiry. This is really an exciting time for neuroscience 
research in general psychiatry as well as child and adolescent 
psychiatry. There are opportunities for breakthroughs in 
understanding of cause and effect as well as treatment that 
really we think can change the lives of those with mental 
illnesses as well as serve for prevention.
    The notion of outcome based medical care where we really 
look at what we are doing and study it scientifically is 
notnew. But I think it is expanding.
    What are our future research priorities? Well, first off, 
and most important, it is prevention and treatment of the 
prevalent or disabling disorders. The highest priority for us 
continues to be the development of safe and effective 
treatments for disorders such as childhood onset schizophrenia, 
bipolar disorder, major affective disorder, attention deficient 
hyperactivity disorder, and conduct disorder.
    All of these have problems not only with a great deal of 
morbidity, that is interference with growth and development, 
but in long term costs for the families, the patients 
themselves, as well as the country. Anything we can do to 
change that and to help them lead more productive, useful and 
satisfying lives is money well spent.
    A second area is the effect of psychotropic medications on 
children and adolescents. As you know, such medications tend to 
be used primarily off label, and are subject to a number of FDA 
concerns, as well as concerns for all of us. Many of these 
medications have been found to be clinically sound, but as 
their numbers grow, the research resources must be there to 
assess their effect on young, growing people.
    It is not acceptable simply to extrapolate the research on 
adults onto smaller sized children. Children are not just small 
adults. We need to do separate investigations very carefully.
    We need to utilize our research progress, which has been 
tremendous, in the areas of basic science to the understanding 
of major childhood mental disorders. Given the dramatic 
advances over the past decade in the developmental 
neurosciences, as well as human genetics, we have really 
unparalleled opportunities to advance our understanding of 
genetic and neurological and neurobiological mechanisms in the 
pathophysiology of childhood and adolescent disorders.
    Neuroimaging techniques such as magnetic resonance imaging 
will prevent non-invasive visualization of changes in blood 
flow. Genetic research specific to child and adolescent mental 
disorders also is growing rapidly, as these are important 
contributors to the pathogenesis of a number of child and 
adolescent mental disorders. We can look at such areas as early 
brain development.
    Mr. Dickey. We have run out of time. I forgot to warn you 
at four and a half minutes. I am sorry.
    Dr. Robinowitz. May I have 30 seconds?
    Mr. Dickey. No, ma'am, if you can just submit the rest of 
your support.
    Dr. Robinowitz. Okay, thank you very much.
    [The prepared statement of Carolyn Robinowitz, M.D., 
follows:]

[Pages 420 - 428--The official Committee record contains additional material here.]


    Mr. Dickey. Thank you, ma'am. I am sorry to be so strict.

                              ----------                              

                                         Wednesday, April 16, 1997.

                                WITNESS

LYNN A. DRAKE, M.D., AMERICAN ACADEMY OF DERMATOLOGY

    Mr. Dickey. Dr. Lynn Drake, President-Elect of the American 
Academy of Dermatology, representing the American Academy of 
Dermatology. Welcome.
    Dr. Drake. Thank you, sir.
    Mr. Dickey. You have five minutes. I will try to notify you 
at four and a half.
    Dr. Drake. I am pleased to not only be President-Elect of 
the American Academy of Dermatology, the group I represent 
today, but I am also Professor and Chairman of the Department 
of Dermatology at the University of Oklahoma Health Sciences 
Center, the home State of Congressman Istook, who is a member 
of this subcommittee.
    Mr. Dickey. Are you proud of that? [Laughter.]
    No comment.
    Dr. Drake. Yes, sir, absolutely. You bet.
    You have my written testimony, so I am just going to kind 
of chat with you for a moment about what I think are important 
issues. Biomedical research is actually the basis upon which 
all medical care is based. Your committee and the Congress as a 
whole has been very generous in its support of biomedical 
research. Without it, we would not be the world's leader in 
health research and the number one export that we have in the 
health arena is the results of our research, as well as much of 
our basic medical care isexported.
    So, I want to thank you for your support and hope that that 
will be continued.
    Another thing that may not have been mentioned is that our 
research in biomedical areas also contributes to the economic 
growth in other areas of our economy. It has been estimated 
that there is as much as $40 billion of benefit to our economy 
from biomedical research as an end result, as you go down the 
line.
    I think that is an important notion. Because it creates 
jobs, it creates exports, it benefits our patients, and it 
benefits citizens.
    So biomedical research is more of a foundation than we are 
used to talking about, in my opinion.
    Now, then, of course the Academy supports the increases 
recommended, 9 percent as recommended by the judgment of 
professional staff. We appreciate that increase in the NIH 
funding for 1998. In our area, we are also very supportive of 
the CDC's prevention programs, because so much of skin disease 
is preventable.
    Mr. Chairman, we in dermatology treat over 3,000 diseases 
of the skin, hair and nails. Over 60 million Americans are 
affected by skin disease, at a cost of about $7 billion a year. 
Skin diseases are real important. We tend to ignore them, 
because often they are not life threatening.
    But they are emotionally and psychologically devastating. 
Because if you have something on your skin, other people see 
it. If you have something in your heart, people may not know 
it. If you have something in your liver, people may not know 
it. But if you have got psoriasis all over your body, it 
interferes with your ability to get a job and it interferes 
with your ability to function.
    If your child has alopecia areata, which is a disease where 
you lose your hair for no particular reason that we know of, 
these kids go to school, it affects their lives, it affects 
their ability to interact with other children. It is 
devastating.
    Skin disease, because it is visible, although they are non 
life threatening diseases in many instances, they are 
devastating. We really need to continue working on these kinds 
of rare diseases that impact peoples' lives.
    Now, I want to move into another disease where there has 
been a really beautiful advance this year in research, and that 
is skin cancer. Skin cancer, of all the new cancers reported in 
the U.S. each year, is the largest number. What is really 
interesting is----
    Mr. Dickey. Is that melanoma?
    Dr. Drake. No, sir, melanoma is part of it, but it is also 
basal cell carcinoma, and squamous cell carcinoma. About 80 
percent of skin cancers are either basal cell or squamous cell. 
What is particularly interesting about them is they are 
preventable for the most part. Because they are in direct 
correlation with sun damage.
    The CDC is an important component, the education and 
prevention programs, because if we can educate people and get 
them to stay out of the sun, we can help prevent it. As a 
matter of fact, I want to be sure to invite you and your whole 
staff and the committee, we are doing, the D.C. Dermatology 
Society is doing their annual screening on the Hill. It will be 
on May 7th between 10:00 and noon at the Rayburn first aid 
station, Room B344.
    Mr. Dickey. Is there going to be any sunbathing in 
connection with that?
    Dr. Drake. Well, maybe we will hand out some sunscreen. But 
past that, I think we should not encourage sunbathing.
    But melanoma, you commented on another very interesting 
thing, melanoma is a deadly form of skin cancer. There are 
40,000 new cases of melanoma this year alone, and 7,300 
Americans will die from this disease. It affects primarily, the 
highest incidence, prevalence, rather, is in older white males. 
But what is interesting, it is the most common cancer among 
people between the ages of 25 and 29. So this is a devastating 
disease.
    The research advance that I wanted to mention to you has to 
do with basal cell carcinoma. It centers around a subset of 
basal cell carcinoma called the basal cell nevus syndrome, 
which people get just dozens and dozens and dozens of basal 
cells. And we do not know why.
    What has happened this year is scientists have identified 
the gene that is the cause of this rare inherited disorder. So 
we are very optimistic, because we have identified the gene for 
one form of it. Perhaps we can find the deficit where UV 
radiation is so damaging, and precipitates more basal cells.
    Mr. Dickey. Thirty seconds.
    Dr. Drake. I want you to know that skin disease affects a 
lot of people, and I want you to know that we are very 
appreciative of your support, and we hope you will continue it.
    [The prepared statement of Lynn Drake, M.D., follows:]

[Pages 432 - 440--The official Committee record contains additional material here.]


    Mr. Dickey. Thank you, ma'am. You did a good job.

                              ----------                              

                                         Wednesday, April 16, 1997.

                                WITNESS

NANCY N. FUTRELL, M.D., AMERICAN ACADEMY OF NEUROLOGY

    Mr. Dickey. Dr. Nancy Futrell, Associate Professor of 
Neurology, Medical College of Ohio, representing the American 
Academy of Neurology.
    You are going to tell me that Mike Oxley is your 
Congressman, is that what you are going to tell me?
    Dr. Futrell. Marcy Kaptur is my Congresswoman.
    Mr. Dickey. That is all right. Okay. That is better than 
Ernie Istook. [Laughter.]
    Dr. Futrell. I am glad to know that.
    Thank you, Mr. Chairman. I am Nancy Futrell, Associate 
Professor of Neurology from Medical College of Ohio. I am here 
as an NIH funded researcher. I do both basic animal research 
and clinical research in the area of stroke.
    I am also here as patient with neurological disease who has 
been the beneficiary of medical research. I was diagnosed in 
1972 with myasthenia gravis. In 1978, that disease was cured 
due to new medical therapies which were developed for a disease 
that was once chronic and 15 percent fatal.
    Mr. Dickey. Was that with medication?
    Dr. Futrell. With medication and surgical treatments, the 
disease was cured in 1978.
    I am here representing the American Academy of Neurology. 
That is an organization of 15,000 practicing neurologists and 
neuroscientists in the United States. I am also representing 50 
million patients with neurological diseases.
    The diseases that I treat were considered hopeless one or 
two decades ago. But due to the funding produced by the efforts 
of this subcommittee and the full committee, we have been able 
to find important treatments and even cures for some of these 
diseases.
    My particular interest is in the area of stroke. In June of 
1996, the FDA approved TPA, which is a clot busting drug, for 
the use in patients with stroke within three hours of the 
onset. I had the opportunity to use that drug shortly after it 
was approved on a 53 year old patient who came in with a severe 
stroke. She was unable to move her arms and her legs, she was 
unable to talk.
    I gave her the drug, and within 10 minutes she started to 
move her toes. Within three hours, this woman was able to walk 
and talk. She is now a healthy 54 year old woman awaiting the 
birth of a grandchild.
    After having practiced stroke----
    Mr. Dickey. What was the cost of that treatment?
    Dr. Futrell. The cost of the TPA itself was about $1,000, 
and the cost of a hospitalization would have been about $9,000 
in total. This is a woman who in the past would either have 
been dead or would have spent the rest of her life in a nursing 
home. So it was a tremendous cost savings.
    After watching patients with stroke have their brain 
destroyed for years, I have to tell you, it was the most 
rewarding professional day of my career to see a stroke 
literally stopped in its progression.
    Mr. Dickey. Why is that lady not here in place of you?
    Dr. Futrell. I will bring her next time if you would like. 
[Laughter.]
    Mr. Dickey. Excuse me.
    Dr. Futrell. I do not want to give the impression that we 
are finished in our progress with stroke, however, this drug is 
dangerous. About 6 percent of the patients who receive this 
drug bleed. And the bleeding may be fatal.
    There are some number of patients who do not respond to 
this drug. It is not perfect in its efficacy. We are now 
looking for safer, more effective treatments.
    The other problem we have is a major public education 
initiative, which is underway with NINDS, because we need to 
let our patients know the warning signs of stroke. We need to 
educate more physicians on stroke prevention, and to develop 
the emergency machine to get the patients into our emergency 
rooms in time.
    When it comes to stroke, time is brain. We need to learn to 
work with that better.
    There is another area of interest. I am here sort of as the 
unofficial representative of the baby boomers today. We are 
definitely entering middle age, and are prepared toincrease the 
ranks of the elderly over the next few decades. Which means that we 
need to realize that the incidence of Alzheimer's disease is probably 
going to double or triple or even more over the next few decades.
    This is also no longer a hopeless disease. We have 
identified genes that give patients risks for Alzheimer's 
disease, and we have also identified genes that are protective 
against the development of Alzheimer's. If we understand how 
these genes function, these may lead to important preventive 
therapies. In addition to that, there are studies now of 
vitamin E and ibuprofen and other drugs in preventing stroke.
    Multiple sclerosis is another disease that affects young 
Americans. I watched my sister deteriorate from 1974 and these 
treatments have stopped the progression in the last three years 
of her disease.
    We believe that through additional medical research we can 
improve the condition of these diseases even more. We would 
like to thank this committee for its efforts in the past and 
support the request for a 9 percent increase in NIH funding, 
with a particular emphasis on brain disease, and an emphasis in 
clinical research and the training of clinical researchers.
    Thank you.
    [Clerk's note.--Information required pursuant to clause 
2(g)(4) of Rule XI of the Rules of the House of Representatives 
was not received from this witness or from an entity 
represented by this witness.]
    [The prepared statement of Nancy Futrell, M.D., follows:]

[Pages 443 - 450--The official Committee record contains additional material here.]


    Mr. Dickey. Good job, Nancy. Thank you.

                              ----------                              

                                         Wednesday, April 16, 1997.

                                WITNESS

JAN TOWERS, AMERICAN ACADEMY OF NURSE PRACTITIONERS

    Mr. Dickey. Ms. Towers. How are you doing, Jan. Director of 
Governmental Affairs, Practice and Research, representing the 
American Academy of Nurse Practitioners. You have five minutes. 
Thank you for being here.
    Ms. Towers. My name is Jan Towers. I am a practicing family 
nurse practitioner. Today, I am representing the American 
Academy of Nurse Practitioners, the organization that 
represents over 17,000 nurse practitioners of all specialties 
throughout the United States.
    We are here today to speak for the need for continued 
funding, Federal funding, for nurse practitioner and nurse 
midwife educational programs and traineeships for the coming 
fiscal year. As has been pointed out in the past years, nurse 
practitioners and nurse midwives constitute an effective body 
of primary care providers that may be utilized at a cost 
savings in both fee for service and the managed care arenas in 
this country.
    Savings to the Federal Government of greater than $55 
million in the Medicare program are estimated with full 
utilization of nurse practitioners in that system. Likewise, 
managed care data is becoming available that demonstrates an 
aggregate patient per month cost savings of over 50 percent 
among patients seen by nurse practitioners when compared to 
similar patients being cared for by physicians.
    Other cost savings that can be realized by the 
Governmentwhen nurse practitioners and nurse midwives are appropriately 
utilized include savings due to reductions in emergency room visits and 
hospitalizations and savings associated with treatment of illness in 
its early stages. Multiple studies in both fee for service and now 
managed care have been conducted that demonstrate cost savings in 
diagnostic testing, prescribing and hospitalizations and emergency room 
use when these two groups of providers are utilized to provide primary 
care to populations of all ages.
    As this committee knows, nurse practitioners and nurse 
midwives are highly qualified primary care providers who have 
demonstrated their ability and interest in providing primary 
medical care to individuals in families in both rural and urban 
settings, regardless of age, occupation or income. The quality 
of their care has been well documented over the years. With 
their advance preparation, they are able to manage the medical 
and health problems seen in the primary care and acute care 
settings in which they work.
    I am not going to go into a description of what nurse 
practitioners do or where they are located. I think that is 
well known by members of the committee.
    According to data collected by the American Academy of 
Nurse Practitioners, 82 percent of nurse practitioners are 
employed in primary care settings and over 50 percent of their 
patients have family incomes in the poverty range.
    In order to guarantee the proper preparation of nurse 
practitioners and nurse midwives, assistance in the development 
of high quality programs continues to be needed across the 
country. The funding for such programs has always been limited, 
and should always be more. But the value and worth of such 
funding continues to be indisputable.
    Two years ago, only 14 new programs out of 127 applicants 
were able to be funded for a three year period at the amount of 
a little over $200,000 per program. Last year, new applicants 
were not even solicited as the Division of Nursing sought to 
fund the approved applicants unable to be funded the previous 
year. Out of that pool, another 21 programs were able to be 
funded.
    This year, 88 programs from 35 States have applied for 
assistance. Again, only a small number will be able to be 
funded at these modest amounts.
    While the sums of money described here are but a drop in 
the bucket compared to investments made by the Federal 
Government to underwrite the costs of preparing other medical 
professions, the loss of this funding would create significant 
problems and erect additional barriers to the effective 
utilization of the most cost effective primary health care 
providers in our health care system.
    Likewise, traineeship monies are being utilized by students 
in all 50 States and the District of Columbia. These monies are 
of particular importance in the recruitment of nurse 
practitioners and nurse midwives in underserved communities. 
Again, while the funds fall short of the mark for assisting in 
the preparation of these important cost effective health care 
providers in the system, the amounts appropriated in the past 
have helped to reduce barriers for many students desiring to 
become nurse practitioners and nurse midwives. Surveys of nurse 
practitioners and nurse midwives have shown this investment to 
be a good one in terms of assisting students who otherwise 
might not be able to return to school and in terms of adding 
providers to care for rural and urban underserved in this 
country.
    In addition, the need for funding for special projects to 
evaluate the worth, quality and cost effectiveness of nurse 
managed centers and other creative applications of primary care 
services by nurse practitioners and nurse midwives and the need 
for continued data collection in this realm can only reinforce 
the fact that the appropriation should not only not be cut, but 
that they should actually be substantially increased if the 
Government is truly seeking methods to provide quality, cost 
effective care to all populations, especially to the 
underserved as it says.
    While we once again recognize the difficult decisions that 
must be made regarding HHS appropriations for the coming year, 
it seems logical that continued appropriations for nurse 
practitioner, nurse midwife, educational programs, traineeships 
and program exploration would still be a wise investment.
    We thank the members of the Appropriations Committee for 
their efforts on behalf of nurse practitioners and nurse 
midwives and the patients they serve. We know you recognize the 
value of our services.
    Mr. Dickey. Ma'am, could I take some of your time? We have 
got 30 seconds.
    Ms. Towers. Sure.
    Mr. Dickey. Let me ask you this. Do you know of any 
circumstances, particularly in rural America, where the nurse 
practitioner is put in too much an area of responsibility?
    Ms. Towers. In all honesty, no. A nurse practitioner knows 
what her limitations or his limitations are, and so that is not 
a problem.
    Mr. Dickey. What I have heard from nurses, is that they 
feel uneasy in some of the areas, in the rural, rural parts of 
America. But you have not heard any of that?
    Ms. Towers. No. No, sir.
    Mr. Dickey. Okay.
    Ms. Towers. One of the things that does happen is when you 
have a new nurse practitioner graduating from a program, 
sometimes stepping straight into a situation where they would 
be practicing solo would not be the best thing to do. But 
Ithink most nurse practitioners recognize that and don't move into that 
kind of position until they are ready to do so.
    [The prepared statement of Jan Towers follows:]

[Pages 454 - 460--The official Committee record contains additional material here.]


    Mr. Dickey. Good. Thank you very much for your testimony.

                              ----------                              

                                         Wednesday, April 16, 1997.

                                WITNESS

ROBERT E. HANNEMANN, M.D., AMERICAN ACADEMY OF PEDIATRICS

    Mr. Dickey. Dr. Robert Hannemann, President of the American 
Academy of Pediatrics, representing the American Academy of 
Pediatrics.
    Welcome, Dr. Hannemann. You have five minutes.
    Dr. Hannemann. Thank you, Mr. Chairman and members of the 
committee.
    I am Robert Hannemann, President of the American Academy of 
Pediatrics. I am a practicing pediatrician from Lafayette, 
Indiana.
    On behalf of our 53,000 members and our other pediatric 
colleagues in the Society for Adolescent Medicine and 
Ambulatory Pediatrics, I would like to thank the subcommittee 
for the opportunity to present this statement. I will focus my 
oral remarks on just a few issues and submit our written 
statement for the hearing record.
    Let me start by saying, as pediatricians, we see the 
integral relationship between basic research and the care we 
provide. We see the impact of poverty and violence on the 
health of our children and our adolescents, and we know that 
the future of our work force depends on the decisions that we 
make today.
    Each year, 150,000 children are born with serious birth 
defects, causing about 1 out of every 5 infant deaths. These 
birth defects are also the leading cause of disabling 
conditions in children, which cost all of us, families and our 
Government, billions of dollars each year.
    Vitamin supplements containing folic acid have been proven 
to prevent disabling birth defects, such as spina bifida and 
anencephaly. Unfortunately, this fact is not widely known. Our 
funding recommendation will help us remedy this by supporting 
multiple community approaches, including targeted educational 
campaigns, health education, surveillance and increased 
training of providers and other health professionals. Working 
together, we have a potential to prevent 2,000 to 3,000 cases 
of these types of birth defects each year, thus potentially 
saving nearly $245 million per year.
    You may ask, how do we know about the positive effects of 
adequate folic acid, and that it can reduce birth defects. The 
simple yet obviously complex response is, we know this and so 
many other things because of the important pediatric research 
that has been conducted over the years at the Centers for 
Disease Control and Prevention, at the Maternal and Child 
Health Bureau, at the Agency for Health Care Policy and 
Research, and of course, the National Institutes of Health.
    Let me spend a moment discussing the importance of and the 
need for our continued investment in the full spectrum of 
pediatric research, basic, clinical applied and health 
sciences. Research in prevention of premature birth 
andtreatment of medical consequences has continued to reduce infant 
mortality. For example, research conducted at the NIH, specifically in 
the NICHD, on the Sudden Infant Death Syndrome, or SIDS, has clearly 
shown a relationship between infant sleep position and SIDS.
    The NICHD, in partnership with the Academy and other 
national organizations, has launched a national public 
education Back to Sleep campaign to advise parents, caregivers 
and health professionals to place babies on their backs to 
sleep. As a result, SIDS deaths have fallen by more than 30 
percent in the last three years. But there is more that we must 
do, including ensuring that this important life saving message 
gets to all communities.
    Consider another important example, the development of 
surfactant which can be administered into the lungs of 
premature infants. This has resulted in fewer deaths of infants 
from respiratory distress syndrome, and has saved an estimated 
$90 million a year in hospital costs. My own personal clinical 
research and practice in this area gives me graphic evidence of 
the importance of this research on a daily basis.
    There are many important opportunities for additional 
pediatric biomedical, behavioral and health services research 
which promise significant returns on investment, not only in 
improved health care for children today, and economic 
productivity tomorrow, but also in new insights into the 
prevention and treatment of illness and conditions among 
adults.
    As this subcommittee once again is faced with difficult 
choices and multiple priorities, we know that as in past years, 
you will not forget America's children. Thank you.
    [The prepared statement of Robert Hannemann, M.D., 
follows:]

[Pages 463 - 471--The official Committee record contains additional material here.]


    Mr. Dickey. Thank you, sir. Do you yield back the balance 
of your time?
    Dr. Hannemann. Yes, I would. [Laughter.]
    Mr. Dickey. Thank you. I am going to mark you down extra, I 
am going to consider your request extra. [Laughter.]

                              ----------                              

                                         Wednesday, April 16, 1997.

                                WITNESS

JOAN SHAVER, AMERICAN ASSOCIATION OF COLLEGES OF NURSING

    Mr. Dickey. Joan Shaver, Dean of the College of Nursing, 
University of Illinois at Chicago, American Association of 
Colleges of Nursing. Welcome. You have five minutes.
    Ms. Shaver. Thank you.
    I am Joan Shaver, and I am Professor and Dean of the 
College of Nursing at the University of Illinois at Chicago, 
and a funded nursing researcher.
    I am testifying in support of the National Institute of 
Nursing Research at NIH, and the Nursing Education Act on 
behalf of the American Association of Colleges of Nursing, 
which represents over 510 baccalaureate, masters and doctoral 
nursing education programs in senior colleges and universities 
across the United States.
    We very much appreciate the past strong support for NIH and 
nursing education and thank you for the opportunity to testify 
today.
    While being sensitive to society's mandate to contain our 
costs, overall we respectfully recommend a 9 percent increase 
in NINR-NIH funding over the fiscal year 1997 levels. For NINR, 
that means going from $59.7 million to $65.1 million. 
Additionally, we urge the support of nursing education as a 
vital link to maintaining a productive health research agenda 
for us.
    Nurses are the largest group of health care professionals 
and form the backbone of health care, not just in hospitals, 
but in ambulatory care, public health departments, long term 
care facilities, skilled nursing homes, schools, hospice, 
communities and as well in corporations and private employ. We 
service people in all phases of illness, and often the most 
vulnerable. We help patients and their families manage 
difficult symptoms, resume self-sufficiency when illness is 
most debilitating or threatening, or transition from life to 
death, as well as help people learn to stay healthy.
    Our practice spans a spectrum of human issues that are real 
and immediate. So, therefore, is our research agenda.
    Just as some examples of the kinds of research done through 
the NINR, nurses are often in a position of helping people 
manage pain. Some recent NINR studies show that poor pain 
control following surgery is linked to enhanced tumor growth 
studied in animals, that a particular type of pain reliever 
works better in women than in men, and to refute the myth that 
infant pain following surgery is minimal.
    While research associated with life threatening diseases, 
such as heart disease, AIDS and cancer, is highly visible, the 
possibility of living with a chronic condition is a much more 
likely prospect for Americans, magnified by the graying of 
America. The frailties of aging and chronic illness are high on 
the agenda of nurse researchers.
    For example, NINR is supporting research to limit 
disruptive behaviors and to promote normal resting patterns in 
people with Alzheimer's disease by testing light therapy and 
behavioral modifications. Solutions to these issues of how to 
manage behaviors in the trajectory of Alzheimer's disease can 
help a family care for patients at home and avoid costly 
institutionalization.
    Actually, most of our--and this has already been testified 
to here--most of our health problems are related to behaviors 
like food, drink and substance abuse, inadequate stress 
management, along with exercise, sleep and social deprivations. 
Teaching people how to treat or prevent illness and promote 
health through modifying nutrition, sleep and exercise 
behaviors has long been emphasized in nursing.
    My own work involves looking at the role of sleep in a 
condition called fibromyalgia, a mysterious chronic illness 
with no known pathology that is clear at the moment, that 
affects upwards of 10 million Americans and women five times 
more often than men. So far, we do not know what contributes to 
this particular condition.
    Mr. Dickey. What are the symptoms?
    Ms. Shaver. The symptoms are chronic, debilitating fatigue, 
tender points at particular areas of the body, and a sleep 
disruption is always reported.
    Our study is designed to link evidence that there is a 
sleep disruption but also two separate bodies of evidence that 
there is a hormone disturbance. We are linking the hormone 
disturbance during sleep. The importance of that is that we can 
broaden our ideas about what may be effective treatments. It 
may be that the treatment should be behavioral sleep related 
treatments as well as perhaps hormone augmentation kinds of 
treatments also.
    There is usually complementary treatments that could be 
more effective and more necessary. Better treatments will save 
money, because right now, fibromyalgia accounts for 15 to 40 
percent of all referrals to a rheumatologist.
    Other examples, nurses understand and study the importance 
of coordinating care. For example, through NINR, carefully 
planned early discharge from hospital with follow-up by 
advanced practice nurses sharply reduces tertiary care costs.
    Funds appropriated to the NINR represent only a little less 
than half a percent of what is appropriated to NIH. On that 
small amount of money, the NINR funds individual researchers, 
six specialized research centers, but also the training of 
nurse scientists at this point in time. Most of our 
universities are desperately in need of skilled researchers for 
faculty, because nursing is newer as a human health science, 
needing to amplify the synergy of discovery.
    Our commitment to research addressing the immediate issues 
of human health science means the education of nurses is 
central to cost effective, high performance health care 
delivery. We would like to encourage the support for 
maintaining the fiscal year 1997 level of funding for the Nurse 
Education Act at $65.4 million.
    Nurses are providing care to people who would otherwise not 
have health care. This has been mentioned already, but in 
Illinois, like in many other States, almost one half of the 
counties are medically underserved. Well educated nurses are 
needed to be in these areas.
    Other concerns of ours are present in our written 
testimony, and I thank you very much for the opportunity to be 
here.
    [The prepared statement of Joan Shaver follows:]

[Pages 475 - 481--The official Committee record contains additional material here.]


    Mr. Dickey. Thank you, ma'am. Thank you for coming.

                              ----------                              

                                         Wednesday, April 16, 1997.

                                WITNESS

NANCY BRUTON-MAREE, AMERICAN ASSOCIATION OF NURSE ANESTHETISTS
    Mr. Dickey. Ms. Nancy Bruton-Maree, President, American 
Association of Nurse Anesthetists. Welcome, and you have five 
minutes.
    Ms. Bruton-Maree. My name is Nancy Bruton-Maree. I am the 
program director of Raleigh School of Nurse Anesthesia of the 
University of North Carolina at Greensboro, located in Raleigh, 
North Carolina. I am the President of the American Association 
of Nurse Anesthetists, AANA, and a practicing nurse 
anesthetist. I appreciate the opportunity to present my 
testimony to the committee on behalf of AANA.
    The AANA is a professional association that represents over 
26,000 certified registered nurse anesthetists, CRNAs, in the 
United States. AANA appreciates the opportunity to provide our 
experience regarding Federal funding in nurse anesthesia 
educational programs under Title VIII of the Nurse Education 
Act.
    In the administration of anesthesia, CRNAs perform many of 
the same functions as physician anesthetists. Today, CRNAs 
administer more than 65 percent of the anesthetics given to 
patients each year in the United States. They are front line 
anesthesia providers in underserved urban areas, and are the 
sole anesthesia provider in 70 percent of rural hospitals.
    As you know, Title VIII programs focus on increasing the 
number of primary care providers and increasing the number of 
professionals serving in rural and underserved areas. The 
investment in the education of nurse anesthetists would assist 
in reaching these goals. First, a stable supply of CRNAs helps 
to ensure access to primary care services. CRNAs are 
traditionally not defined as primary care providers themselves, 
but provide services that support primary care.
    For example, a facility or professional that provides 
obstetrical care to pregnant women is generally recognized as 
providing primary care. Offering an epidural during labor and 
delivery is part of the obstetrical care. Therefore, the CRNA 
provides services that are vital to the quality of primary 
care. Often, the CRNA is the only provider of such services in 
rural areas.
    Second, CRNAs are the solo providers of anesthesia in 70 
percent of rural hospitals. Rural eastern North Carolina is a 
good example. My program was begun in Raleigh in 1990, because 
of a shortage of CRNAs in the area. Only two large hospitals 
exist East of Raleigh, both located on the coast, with a large 
number of rural hospitals located between Raleigh and these 
other large facilities, all serviced by CRNAs.
    Continued Federal support of Title VIII programs will 
ensure a stable supply of CRNAs to such rural facilities all 
across the country.
    While there is little dispute that there is a surplus of 
many health care providers in certain parts of the country, 
this is not necessarily the case for the supply of nurse 
anesthetists. Nurse anesthesia programs across the country have 
stabilized, not increased, the number of graduates produced 
each year, averaging approximately 900 to 1,000 annually.
    Ongoing research by Dr. Michael Fallacaro, CRNA, Clinical 
Assistant Professor at SUNY-Buffalo, has established that a 
continued supply of 1,000 graduates per year will maintain the 
current ratio of approximately 8 1/2 CRNAs per 100,000 
population, which is adequately societal demands for 
anesthesia.
    On the other hand, a drop in the number of graduates to 800 
per year would result in a decrease to 7 CRNAs per 100,000 
population. Therefore, in order to maintain a stable supply of 
1,000 graduates per year, CRNA students need continual Federal 
support.
    Nurse anesthesia programs require a rigorous course of 
full-time study that does not allow students the opportunity to 
work outside their educational programs. Therefore, nurse 
anesthesia students rely heavily on Federal funding to assist 
them in meeting financial obligations during their study. 
Without this assistance, the number of nurse anesthesia 
graduates would surely decline. A decline in the number of 
nurse anesthetists would then result in a decline in the 
accessibility to services, primarily in rural areas, that 
depend on non-M.D. providers for the majority of the care.
    In the past, CRNAs have received $4 million authorized line 
item appropriation within Title VIII. In the past year, all of 
that money has been totally expended. AANA would like to see it 
continued in the future.
    Therefore, AANA recommends continued Federal funding for 
all nursing education at the level of $67.32 million, including 
a $2.848 million setaside for nurse anesthetists in fiscal year 
1998.
    I thank the committee for your attention and this 
opportunity.
    [The prepared statement of Nancy Burton-Maree follows:]

[Pages 484 - 492--The official Committee record contains additional material here.]


    Mr. Dickey. Thank you, Dr. Bruton-Maree.

                              ----------                              

                                         Wednesday, April 16, 1997.

                                WITNESS

NANCY MUNRO, AMERICAN ASSOCIATION OF CRITICAL-CARE NURSES

    Mr. Dickey. Nancy Munro, Clinical Nurse Specialist at 
Georgetown University, representing American Association of 
Critical Care Nurses. Welcome. And you have five minutes.
    Ms. Munro. Good morning.
    I am representing AACN in support of funding for the 
National Institute of Nursing Research, the Nurse Education Act 
and the Agency for Health Care Policy and Research for fiscal 
year 1998. AACN is a not-for-profit service organization 
dedicated to the welfare of people experiencing critical 
illness or injury. Our vision is one of a health care system 
driven by the needs of patients, where critical care nurses 
make their optimal contribution.
    The National Institute of Nursing Research at the NIH 
improves the quality of life for all Americans by promoting 
healthy lifestyles and behaviors. AACN strongly supports the 
NINR's goals of health care effectiveness, cost effectiveness, 
and assuring that the scientific agenda has a human aspect. 
Nursing research findings, once thought to affect only nursing 
practice, are now understood to be relevant to all areas of 
health care practitioners.
    As nurses providing care to the critically ill, one of the 
most important things we can do for our patients is provide 
relief for their pain and suffering. AACN is pleased that the 
NINR is playing a major role in NIH's pain research initiative. 
NINR sponsored scientists are conducting research, 
investigating whether men and women respond the same way to 
drugs used for pain relief.
    This research is important, because it offers the potential 
for women with increased pain relief for surgical pain as well 
as pain associated with nerve damage, cancer and other disease 
conditions. Pain is a costly health care problem, costing our 
Nation over $100 billion annually in lost productivity and 
health care expenses.
    AANC sponsors the Thunder Project II, a large sample, 
multi-site research project in partnership with seven other 
nursing organizations. The purpose of this research is to 
examine pain perceptions and responses of acutely or critically 
ill pediatric and adult patients to selected procedures. AACN 
supports the recommendation for a 9 percent increase for NIH in 
the year 1998. AACN also believes that education is a 
fundamental to professional growth, excellence and clinical 
practice and optimal patient outcomes.
    AACN is extremely disturbed by the cuts to health care 
professional education programs in the proposed fiscal year 
1998 budget. The budget request consolidates existing multiple 
categorical grant programs under Title VIII and VII of the 
Public Health Service Act, and replaces them with five program 
clusters. The Nursing Education/Practice cluster includes the 
following programs: nursing special education projects, 
advanced nurse education, nurse practitioner/nurse midwife 
education, professional nurse traineeships, nurse anesthetist 
training, and nursing education.
    Funding for these specific nursing programs is cut from the 
current level of $63 million to $7.7 million in 1998. These 
programs are essential for providing support to strengthening 
the capacity of the nurse education and practice, training 
nurse practitioners and other advanced practice nurses and 
increasing nursing work force diversity.
    AACN supports the funding of Title VII and VIII programs at 
the 1997 level, plus inflation, which amounts to about $302 
million. AACN firmly believes that research is needed to 
develop a scientific basis for critical care nurses practice, 
and to achieve a broad understanding and impact of the critical 
care nurses on patient outcomes.
    Science, based research as supported by the AHCPR, is an 
important complement to the biomedical research conducted at 
NIH. AHCPR's clinical research goes a step further by 
evaluating the effectiveness of new and existing medical 
interventions and clinical practice.
    As you know, in 1990, Congress passed the Patient Self-
Determination Act. This is of particular interest to critical 
care nurses, in light of the Robert Wood Johnson study that 
followed 9,000 critically ill patients, and found discrepancies 
between the patients' end of life care directions and their 
actual implementation and treatment. This Act requires 
hospitals and nursing homes to inform patients admitted to 
their facility about their options in completing an advance 
directive or living will.
    Since there is no provision for implementation funding, 
patients and their families have not been helped. Advance 
directives, such as living wills and medical power of attorney, 
are the only vehicle to let professional health care providers 
know patients' wishes in case they become incapacitated and 
unable to make treatment decisions. In addition, advance 
directives do away with much of the wasteful and emotional cost 
of guilt and suffering as a result of being forced to make 
decisions about treatment for someone else without knowing 
their wishes.
    AACN is currently working to educate consumers about the 
Patient Self-Determination Act and its importance. The 
committee's support of AHCPR has provided AACN with resources 
to design a community outreach program to improve the 
completion for the rates of advance directives.
    AACN's research on advance care planning, including advance 
directives, has specific emphasis on education programs 
stressing the definition and documentation of health care 
preferences in catastrophic illness or injury.
    I appreciate this opportunity to present testimony before 
the committee on behalf of AACN. AACN looks forward to 
continuing dialogue with you and the members of 
thesubcommittee.
    [The prepared statement of Nancy Munro follows:]

[Pages 495 - 503--The official Committee record contains additional material here.]


    Mr. Dickey. If you would, we do not have a copy of your 
testimony. Could you furnish that to us, please?
    Ms. Munro. Yes.
    Mr. Dickey. Thank you.
                              ----------                              

                                         Wednesday, April 16, 1997.

                                WITNESS

MELVIN SABSHIN, M.D., AMERICAN PSYCHIATRIC ASSOCIATION

    Mr. Dickey. Dr. Melvin Sabshin, Medical Director of 
American Psychiatric Association, representing the American 
Psychiatric Association.
    Welcome, Dr. Sabshin.
    Dr. Sabshin. Thank you, sir. That is an excellent 
pronunciation of my name, which most often is distorted. I am 
grateful to you.
    Mr. Dickey. You have five minutes. Thank you for coming.
    Dr. Sabshin. Yes, sir.
    I am here to represent the APA and to make testimony about 
the NIMH, NIDA, the National Institute for Alcohol Abuse and 
parts of the SAMHSA program. Let me say, it is a great honor to 
come and testify this year, specifically because this is the 
50th anniversary of the NIMH. And I am proud of that. This is 
very meaningful for our field.
    It is also a good year vis-a-vis the parity legislation 
that passed, and we are very thankful for that. At the same 
time, this is a year when there has been enormous publicity 
about mental illness. I brought with me magazines, Newsweek, 
Time, U.S. News and World Report, that take up some of the new 
developments and research in this field and specifically talk 
about the agencies that have done such a good job. I am proud 
of that.
    You have my written testimony and I want to say that I 
would like to just make some summary comments about some areas 
of research developments that I think are very positive. At the 
same time, I want to talk about some areas of new opportunities 
for research.
    It is important to note that depressive illness is now 
eminently treatable. This is something that has evolved over 
the last few years. Now 80 percent of people with depression 
who are treated with a combination of medication and 
psychotherapy do indeed succeed. It is one of the most 
treatable illnesses, when we talk about chronic illnesses.
    When I speak about chronic illnesses, I want to make the 
point that in terms of the parity legislation, we have 
medication now that will help people cope over a lifetime and 
these people may need such treatment over a lifetime. It is 
important to note that this is now available.
    A recent study in California showed that for every dollar 
spent on treatment of people with drug and alcohol abuse, there 
is a $7 savings, especially in the context of crime and health 
care costs, an important development. Health care research has 
indicated that children's hospitalization can be prevented by 
adequate treatment.
    A new medication for alcoholism, naltrexone, blocks both 
the craving for alcohol and the pleasure when you go high, so 
it is very important to note that development. We are getting 
close to a preventive technique against cocaine abuse. Some of 
the animal research is very promising in thatregard and ought 
to be watched very carefully.
    In terms of the areas of opportunities, I just want to 
mention three very briefly, that the medications that we have 
available for children are not really designed for children. 
They have been extrapolated from adult work. We need to take a 
hard look at what is needed for children.
    Let me say, sir, that I am emphasizing children in my 
comments. I was here during the testimony of the agency people, 
and the questions that came up at this subcommittee related to 
children very heavily, so I chose that area at this time.
    The medications for children need to be looked at in a new 
sense. At the same time, the possibilities of medication and 
psychotherapy for children need some special attention.
    The problem of drug abuse in children and adolescents has 
been emphasized by many people. We need to know the pathways 
that lead to that use. Studies of those pathways might lead to 
an understanding of possibilities of reducing that.
    Fetal alcohol syndrome is a syndrome of broad 
neurobiological problems that develop after a mother has been 
involved in drinking during pregnancy. The need to study why 
some women drink so heavily during pregnancy is extremely 
important.
    I hope you will consider some of these new opportunities 
and I hope the committee will look at that. I have specified 
some of the budgetary needs for that in my presentation. I will 
ask you to consider that.
    And I do yield the balance of my time.
    [The prepared statement of Melvin Sabshin, M.D., follows:]

[Pages 506 - 508--The official Committee record contains additional material here.]


    [Laughter.]
    Mr. Dickey. Thank you, sir, that is a minute we can well 
use.
    Dr. Sabshin. I am glad.
    Mr. Dickey. Let me ask you, the medication for alcoholism, 
I just hope you stress that.
    Dr. Sabshin. I did. And I hope I can do that even more. It 
is very important.
    Mr. Dickey. It is. Thank you.
    Dr. Sabshin. Thank you, sir.
    Mr. Dickey. You did a good job.

                              ----------                              

                                         Wednesday, April 16, 1997.

                                WITNESS

FELICE LEVINE, AMERICAN SOCIOLOGICAL ASSOCIATION

    Mr. Dickey. Now we have Dr. Felice Levine, Executive 
Officer of the American Sociological Association, representing 
the American Sociological Association. Welcome, and you have 
five minutes.
    Ms. Levine. Thank you, Mr. Chairman.
    I welcome the opportunity to talk with you today regarding 
fiscal year 1998 appropriations for the National Institutes of 
Health. I am Felice Levin, a social psychologist, and as you 
have indicated, Executive Officer of the American Sociological 
Association, a scientific society of more than 13,000 
sociologists who are engaged in research, teaching and 
practice.
    In appropriating funds for the National Institutes of 
Health, this subcommittee's record is so impressive, because 
you have sent strong signals that funds should be used to 
coordinate among Federal health institutes, support essential 
health research and train the next generations of scientists. 
We commend and applaud this commitment.
    We also commend your support for balance in the types of 
research conducted by the National Institutes of Health. My 
colleague, Dr. Sabshin, has just outlined very important areas 
of fundamental, social and behavioral science work. And you, 
too, have recognized that social and behavioral factors 
importantly affect health.
    Because you recognized the compelling need to expand 
thetypes of research we conduct, we have a better balance between 
biomedical research and behavioral and social science on health.
    Today, I want to highlight my written testimony by talking 
briefly about coordination, research and training. First, 
coordination. Perhaps one of Congress' most important recent 
accomplishments regarding the National Institutes of Health was 
to conceive and support the Office of Behavioral and Social 
Sciences Research. Since 1995, what we affectionately called 
OBSSR has coordinated social and behavioral research across the 
National Institutes of Health and integrated it with biomedical 
research.
    For example, in fiscal year 1996, OBSSR addressed the 
violence issue by cosponsoring a request for applications 
entitled Research on Violence Against Women Within the Family. 
OBSSR took the lead in this initiative in collaboration with 
the Department of Justice's National Institute of Justice and 
eight DHHS agencies. This remarkable collaboration was the 
first interdepartmental initiative to address violence from a 
multitude of perspectives.
    OBSSR is playing a catalytic role in addressing some of our 
most pressing health problems and could productively use 
expanded resources. I can assure you, Mr. Chair, that an 
increase to $4 million for OBSSR in fiscal year 1998 would have 
a multiplier effective for every additional dollar, as we 
already have seen over the past two years of its performance.
    Second, research. I want to emphasize the importance of 
investing in basic health research and doing so fully inclusive 
of the social and behavioral sciences. One topic where we can 
see the powerful, positive impact of conducting social and 
behavioral science research relates to AIDS. Epidemics of the 
size and scope of AIDS require examination of the social 
context in which they occur.
    For example, sociological research demonstrates that when 
drug users educate other drug users about how AIDS is spread, 
they share equipment less, use shooting galleries less often, 
decrease their injections and are more likely to use new 
needles or sterilize needles.
    We have an urgent priority, too, as my prior colleagues 
have emphasized, to fund children's health initiatives, and to 
include a focus on behavioral and social science research. I 
need not remind this subcommittee of the ground breaking work 
supported by the National Institutes of Child Health and Human 
Development. NICHD work, addressing crucial health issues in 
our society, for example, how to teach parenting and nurturing 
skills, has been of monumental importance.
    It also supports and promotes research such as the 
sociological studies that have produced essential data on the 
economic impact of divorce and the consequences of growing up 
in homes with both parents.
    The NIH, as a family of institutes, has recognized the 
importance of the full life cycle, so the third research area I 
want to highlight briefly is aging. Federal funded research 
supported by the National Institutes is examining----
    Mr. Dickey. You have 30 seconds.
    Ms. Levine. Then I would not briefly emphasize aging.
    I do want to say one word about training. The importance of 
really planning for our next generations. The kind of training 
program that the American Sociological Association would 
support from the NIMH over 23 years to train minority 
investigators to do quality scientific research in mental 
health has made a monumental difference in putting 350 
researchers into that pipeline. I think as we think about 
research, we really need to simultaneously take seriously the 
training investments.
    And with that, I would like to conclude and offer our 
strong support for the recommended 9 percent increase in 
Federal support for the NIH.
    [The prepared statement of Felice Levine follows:]

[Pages 511 - 520--The official Committee record contains additional material here.]


    Mr. Dickey. Thank you, ma'am. Good job.
    I turn the gavel over to Mrs. Northup, the gentlewoman from 
Kentucky.
                              ----------                              

                                         Wednesday, April 16, 1997.

                                WITNESS

CARMEN VALENZUELA, M.D., THE CENTER FOR VICTIMS OF TORTURE

    Mrs. Northup [assuming chair]. We are going to go a little 
out of order now, and I am going to ask Dr. Carmen Valenzuela 
to come forward.
    Dr. Valenzuela. Good morning. My name is Carmen Valenzuela. 
I am in exile in the United States for the last seven years.
    On February 10, 1990, I was kidnapped by members of the 
intelligence section of the Guatemalan Army who wanted 
information from my activities and conduct with the current 
government opposition. They detained me for eight days in a 
former military academy, located just a few blocks away from 
the American embassy in the heart of Guatemala City.
    Army officials tortured me, brutally beating me and slow 
puncturing my legs with wires. I still have scars and the 
remains of hypotrophy in the muscles of my thighs because of 
the specially designed to torture stick beating to inflict pain 
and avoid languishing.
    During my ordeal, they kept my hands cuffed and my head 
hooded all the time. They also applied to me the technique 
called ``the hood,'' consisting of tightening a plastic bag 
around my neck to force me to talk. When I felt I was going to 
suffocate, I had to stamp my feet so I would alert them that I 
could fade.
    I recall very distressfully their welcoming my remarks as 
they started to beat me: ``We are not going to kill you, you 
are going to scream for us to kill you.'' I was daily 
interrogated for hours. They forced me to take drugs to relieve 
my injuries after they had beaten me. They humiliated me with 
insults and other offenses, soaked me with cold water and put 
me to sleep on the floor of a dirty bathroom for a whole night.
    Finally, they forced me to appear in a video intended to 
recall the ``future history'' in which I denounced myself and 
stated all kinds of horrible things I supposedly had done to 
harm the ``security of the state.'' I was released only thanks 
to a national and international campaign that pressured the 
Government.
    However, my release was conditioned on my agreeing to give 
an official story to the media and police about my kidnapping. 
I was told to state that I had been kidnapped by criminals 
seeking a ransom. They said that unless I agreed to tell the 
official story, my family, which is still in Guatemala, would 
suffer the consequences.
    Every time I speak out publicly, with the real story behind 
my disappearance, I do it with hesitation about possible 
reprisals the Guatemalan Government may take on my family back 
home.
    During my detention, my captors explained the ``need'' of 
torture in Guatemala. One of them said to me, ``Do you believe, 
Doctor, that the President Cerezo himself doesn't have a 
security force that does all these things in order to maintain 
stability? What we do might be construed as illegal, but we do 
it precisely to control those who are outside the law.'' I 
wonder what would be of this country if you, as legislators, 
approved torture to ``control'' those who are opposed to your 
views.
    The evidence requires that the Guatemalan armed forces 
should be held accountable for the crimes committed against 
their own people. Nevertheless, now that the peace accords have 
been signed, they suggest that from now on there will be room 
only for reconciliation measures, and that Guatemalans should 
forget the past and look forward.
    I just attended a commendable effort made by the U.S. 
Government health authorities to improve the mental health 
workers' understanding on the terrible aftermath of the 
practice of torture. I really did not know the magnitude of the 
problem. I was shocked, it was shocking for me to know that 
there are more than 400,000 other survivors who have arrived in 
this country during the last two decades. Most of them have not 
even been recognized as refugees, and are not receiving any 
special kind of treatment for the trauma resulting from 
torture.
    After I arrived in the United States in 1990, I never 
thought about being treated for the post-traumatic stress 
disorder that I might have suffered for years. I had not even 
recognized the symptoms until I started to hear about PTSD.
    I entered the U.S. at New York City, and even if I had 
wanted to be treated, there was no available place I might have 
gone for treatment in 1990. I am a physician, I was a professor 
at the National University. I was accepted at two of your most 
prestigious universities. Although I studied public health and 
was connected to a good network of solidarity groups and human 
rights organizations, I never learned about a single mental 
health professional who I could consult for treatment.
    During these last four years and after talking about this 
issue before some selected and friendly audiences, I have found 
that speaking out about my story has been for me a sort of 
treatment to overcome a part of my presumed PTSD.
    After seven years of exile in the U.S., having obtained my 
refugee status, then my green card, and even a U.S. citizen 
child, I still feel so afraid to go back. I am still very 
uncertain about staying in the United States.
    I have made many friends and I am very grateful for the 
opportunities I have had so far. But the system in general has 
not been so good to me. For instance, when my child was born, I 
was a refugee, a single mother and I was unemployed. But it 
seemed then like the workers of the Department of Health and 
Human Services were rather blocking the process instead of 
helping us. How could I even think then about having treatment 
as a survivor of torture for my mental status.
    I hope you ladies and gentlemen can do something about the 
ones who have looked for and found shelter in your country. 
Think about them as if they were your relatives or friends 
escaping from oppressive regimes that the same United States 
has promoted around the world. Think that the United States has 
a moral obligation to all of them.
    The Center for Victims of Torture has asked me today to 
serve as a witness on behalf of other survivors who cannot come 
or do not wish to speak about this. The Center was established 
in Minneapolis, Minnesota, in 1985. It was the first 
comprehensive treatment center in the United States. It has 
treated well over 600 victims of foreign governmental torture 
who have come from all continents.
    Most of these existing centers have only been recently 
established. All operate on modest budgets, must rely on pro 
bono services of health care professionals. All can only serve 
a fraction of the victims in their area.
    The first national conference that I mentioned to you 
earlier was sponsored by three Federal agencies. It was clearly 
as success in sharing information of the field of care for 
survivors of torture, and in bringing together practitioners, 
research experts, and Federal officialsworking in the field.
    The Center for Victims of Torture makes these 
recommendations to the subcommittee, and asks that you consider 
including them in the report: that the National Institute of 
Mental Health increases its support for research into the 
methods of treating victims of torture, and such support could 
include an evaluation of the various treatments; that the 
Office of Refugee Resettlement allocate a minimum of $1 million 
in fiscal year 1998 to supporting treatment centers for victims 
or torture for care and training; that the Center for Mental 
Health Services increase its technical assistance and training 
programs for centers for victims of torture; and that the 
Centers for Disease Control present a plan for estimating the 
number, distribution and availability of care for the torture 
victim population in the United States.
    The Center suggests that the above agencies report on the 
implementation of these recommendations in their request for 
funding for fiscal year 1999.
    I appreciate having the opportunity to testify before you 
today, and would be grateful for your consideration of the 
Center's recommendation. I wish I would have had the fortune to 
be treated at the Center, and now I am very honored by them in 
allowing me to speak in their behalf.
    Thank you very much.
    [The prepared statement of Carmen Valenzuela, M.D., 
follows:]

[Pages 524 - 531--The official Committee record contains additional material here.]


    Mrs. Northup. Thank you very much for your very moving 
testimony.
                              ----------                              

                                         Wednesday, April 16, 1997.

                                WITNESS

J. ROUTT REIGART, M.D., CHILDREN'S ENVIRONMENTAL HEALTH NETWORK

    Mrs. Northup. Dr. Routt Reigart. Dr. Reigart is Chair and 
Board Director of the Children's Environmental Health Network.
    Since we have so many witnesses, let me just warn witnesses 
that I will tap on the microphone with 30 seconds warning just 
to sort of remind you to conclude your remarks.
    Dr. Reigart. Thank you, Mrs. Northup.
    Thank you for the opportunity to testify. My name is Routt 
Reigart. I am Chair of the Board of the Children's 
Environmental Health Network. I am a pediatrician from 
Charleston, South Carolina.
    The network is the only national, multidisciplinary, 
multicultural project whose sole mission is to promote a 
healthy environment for children and protect the fetus and the 
child from environmental hazards. The network's activities are 
concentrated in three areas: education, research and policy. I 
am here to speak about research, and I have a longer statement 
which I have submitted for the record. I will just try to hit 
some high points.
    The issue of protecting children from environmental hazard 
has generated a great deal of interest. In the fiscal year 1998 
appropriations bill, this subcommittee has several 
opportunities to assure that the current interest in this topic 
results in genuine advances in our ability to protect the 
Nation's children and that our scarce Federal resourcesare used 
widely.
    Earlier this year, the network sponsored the first national 
research on children's environmental health issues. The 
findings of this conference provide a succinct summary of where 
we are and where we need to go. The 250 researchers, physicians 
and other experts at the conference demonstrated that there is 
much we do not know about the environmental hazards our 
children are exposed to, and the impact of these exposures.
    Specifically, we need more and better information on what 
substances children are exposed to, and the extent of their 
exposure. We do not know children's tolerances to various 
toxicants. Most available data has been developed by research 
on adults, not children. We need more epidemiologic and 
clinical studies, especially long term studies, of children 
relating to their exposure to environmental hazards and 
resulting outcomes.
    We need studies and discussion in the important field of 
ethics, particularly in the areas of genetics and biomarkers. 
We need to know more about the true costs of environmental 
diseases in children, which have been markedly underestimated 
to date. These underestimates have led to many flawed analyses 
of the benefits of preventing environmental illness in 
children.
    Some of the things we do know about children and 
environmental hazards, these are familiar, children are not 
just little adults. A child's metabolism, physiology, diet, 
exposure patterns and behavior are quite different from those 
of an adult. Current environmental policies and standards are 
set to protect healthy adults based on that research on adults, 
and thus do not take into account children's special needs and 
behavior.
    Children of certain racial or ethnic backgrounds and 
children living in poverty face a very disproportionate risk 
from environmental hazards. Given that we have so much to 
learn, it is heartening to see all the recent activity on this 
issue. The last Congress enacted an important piece of 
legislation which for the first time included specific language 
to assure that Federal policies and standards protect children 
from environmental risk. This was the Food Quality Protection 
Act.
    A number of Federal agencies, many in the jurisdiction of 
this committee, such as the National Institute of Environmental 
Health Sciences, the Agency for Toxic Substances and Disease 
Registry, have recently increased their focus on children's 
environmental health. The Department of Health and Human 
Services has set up a subcommittee on children's environmental 
health as part of its internal committee on children's health.
    The U.S. EPA, which I understand is not under this 
committee, last year announced the adoption of a national 
policy assuring that all standards set by EPA are appropriately 
protective to address environmental risks faced by children. 
The Children's Environmental Health Network is delighted at the 
increased interest in this vital issue.
    However, we are concerned that these commendable efforts 
are perhaps being undertaken without adequate communication and 
cooperation among the various Federal entities that fund 
children's research in environmental health.
    I am happy to say that at the research conference we just 
talked about, we got together representatives from key Federal 
agencies and specifically asked them to coordinate their 
efforts. In fact, we received a commitment from a high level 
administrator from EPA, the directors of the National Institute 
of Environmental Health Sciences, director of the National 
Institute of Child Health and Human Development, director of 
ATSDR, and the director of the National Center for 
Environmental Health at the CDC, and also the director of the 
National Cancer Institute.
    I have to say, they made the commitment, and we would like 
to keep them to it.
    The network sees two important opportunities for you as 
subcommittee members crafting the next appropriations bill. 
First, we hope that you can dedicate adequate resources for the 
much-needed basic research in data collection as necessary on 
this issue, understanding the tight fiscal constraints you're 
facing. Second, and just as important, we urge you to assure 
that the Federal agencies and offices working on this important 
issue coordinate and cooperate on their efforts, so that the 
Nation's resources are focused and leveraged to assure the most 
effective use of these resources.
    If you have any questions, I would be glad to answer them.
    [The prepared statement of J. Routt Reigart, M.D., 
follows:]

[Pages 534 - 541--The official Committee record contains additional material here.]


    Mrs. Northup. Thank you very much. Our time is up, but I 
appreciate your testimony.
                              ----------                              

                                         Wednesday, April 16, 1997.

                                WITNESS

H. ALEXANDER ROBINSON, CITIES ADVOCATING EMERGENCY AIDS RELIEF 
    COALITION

    Mrs. Northup. Next we have H. Alexander Robinson, the 
Administrator of Federal Affairs, regarding Cities Advocating 
Emergency AIDS relief. Welcome, Mr. Robinson.
    Mr. Robinson. Good morning. My name is H. Alexander 
Robinson. I want to thank you for allowing me the opportunity 
to speak with you this morning.
    I am the Administrator of Federal Affairs for Cities 
Advocating Emergency AIDS Relief, the CAEAR Coalition. I am 
also a person who has been living with HIV disease since 1983.
    The Ryan White CARE Act represents an important safety net 
for people living with HIV, like me, and like so many others in 
this Nation. I also want you to know that for five years, I 
served on the Metropolitan Washington HIV Health Services 
Planning Council, the Title I planning council for the District 
of Columbia metropolitan area, which includes parts of 
Maryland, Virginia and West Virginia.
    Title I planning councils are indeed an example of local 
decision making. I speak to you today as both an advocate and 
as a potential consumer of care services. My agency, the CAEAR 
coalition, is a privately funded coalition that represents Ryan 
White CARE Act planning councils, people living with HIV 
disease and AIDS, community based AIDS service organizations 
and CARE Act grantees. We are civic and business leaders, 
members of religious organizations, government representatives, 
local public health officials, people living with AIDS and our 
families.
    We have come together with a sense of urgency to advocate 
on behalf of the 49 cities and localities that are served by 
Title I of the Ryan White CARE Act. We are requesting $546 
million in Title I funding for fiscal year 1998, a $96 million 
increase over fiscal year 1997 appropriations.
    Our request for a $96 million increase has three 
components. First, increased funding for viral load testing, 
increased funding for new primary care clients, and increased 
funding for the expanding primary care utilization. Despite our 
success in educating Americans about this epidemic, the CDC 
reports that AIDS continues to be the leading killer of all 
Americans between the ages of 25 and 44.
    The epidemic has grown, relentlessly spreading to new 
regions and new populations. Seven years ago, Title I provided 
assistance to 16 metropolitan areas. This year, 49 metropolitan 
areas received funding under Title I. These 49 communities 
represent 74 percent of all reported AIDS cases in the U.S. The 
CDC also reports the largest increase in AIDS has occurred 
among persons infected through heterosexual contact.
    There is also good news. Some of my friends have almost 
literally been snatched back from the grave. Like my friend who 
we will call John. John has been ill for a very long time. He 
is a sole proprietor of a small business and therefore had 
little health care coverage. After visiting a local Title I 
funded agency that provided case management, John was able to 
piece together a health care plan for himself.
    In and out of the hospital several times, he continued to 
work, always cheerfully, always with hopefulness that seemed 
unjustified by the evidence.
    Then about a year ago, we thought he had reached the end. 
None of the treatments seemed to work. His CD4 counts continued 
to fall. His health continued to deteriorate. He was unable to 
walk, often disoriented, incontinent, unable to care for 
himself in any meaningful way.
    Fast forward today, due to the use of combination drug 
therapies and protease inhibitors, John has regained much of 
his strength. His viral load is at undetectable levels, and he 
is planning for the future. If I know John, he is wondering how 
he can give something back to the community that has enabled 
him to make his recovery.
    John's story is not unusual. Like so many others, John's 
ability to avail himself of the new treatments was made 
possible because in the District of Columbia, Title I CARE 
funds have been used to provide case management services, 
quality primary health care, including the necessary diagnostic 
tests. These therapies, however, cannot be provided outside of 
the overall primary care.
    Madam Chair, we, and me, like so many other people with 
AIDS, want to live. We need to work. We need to stay healthy in 
order to care for our families. We appreciate this committee's 
support of increased funding for the CARE Act, and we ask that 
that continue.
    [The prepared statement of H. Alexander Robinson follows:]

[Pages 544 - 551--The official Committee record contains additional material here.]


    Mrs. Northup. Thank you very much for your testimony.

                              ----------                              

                                         Wednesday, April 16, 1997.

                                WITNESS

CHARLES N. QUIGLEY, CENTER FOR CIVIC EDUCATION

    Mrs. Northup. Again, we are going to change the order. The 
next speaker will be Charles N. Quigley, Executive Director for 
Civic Education, from the Center of Civic Education.
    Mr. Quigley. Thank you. I appreciate having the opportunity 
to address the committee.
    I am here to request your continued support for the civic 
education program, the international civic education program 
that are line itemed in the Department of Education's budget. I 
have submitted written testimony describing each program and 
its achievements.
    I thought it might be interesting, however, for you to know 
how these programs and other small programs in civic education 
that have received your support complement each other and 
together, have both a domestic and international impact far 
greater than might be expected.
    This impact is made possible by a national network of over 
500 leading civic educators in the United States that assist in 
implementing both domestic and international programs. The 
network has been linked with a network of leading civic 
educators in emerging democracies in the former Soviet Union, 
Asia, Africa, Latin America, and in our most recent Balkan 
program, which currently includes the Federation of Bosnia and 
Herzegovina. Hopefully, it will soon include Republika Srpska, 
Croatia, and Serbia.
    You may be interested to know that assisted by these 
networks, the Center's national standards for civics and 
government have not only been well received in the United 
States and used widely, but they have been made available to 
every nation in the world by the USIA through its USIS offices; 
translated into Russian and distributed to 100,000 educators 
throughout Russia, where they are using them for the 
development of their own programs; translated into Chinese by 
the ministry of education in Taiwan and used throughout Taiwan; 
translated into Spanish and distributed throughout Latin 
America; translated into various other languages in the former 
Soviet Bloc nations and is currently being translated in 
Sarajevo to be used as the basis for a civic education program 
for all of Bosnia and Herzegovina.
    Interestingly, used by scholars in Australia for the 
development of national standards and civics and government in 
Australia.
    The curriculum materials that are part of this program, and 
this is one example, We the People, the Citizen and the 
Constitution, are used with millions of students throughout the 
United States. But because of this network, they are also being 
used in emerging democracies. For example, in Russia, the 
Russian Teachers Organization each week publishes one lesson 
from this book in American constitutionalism, and distributes 
it to 10,000 teachers who are using it in a pilot program with 
apparently good results.
    In Hungary, this program, which is a national competition, 
has been used as the basis for the first national competition 
on education for democracy. Finals will be held in Budapest, 
addressed by the President of Hungary and a special session 
held in Parliament.
    In Nicaragua, the program has been used throughout the 
schools, and the solutions to public policy problems that 
students come up with have actually been implemented by the 
Nicaraguan government.
    The Federation of Bosnia and Herzegovina, today there are 
over 1,000 teachers who have been trained who are using this 
program with over 12,000 students. On March 17th, there will be 
the first academic competition on democracy and 
constitutionalism in Sarajevo, with 24 classes, upper 
elementary and secondary classes, coming to Sarajevo, about 800 
or 900 students.
    To return to the domestic program, this program was 
recently honored by Senate Majority Leader Trent Lott, and Tom 
Daschle and the Vice President and seven members of the Supreme 
Court, and 95 members of the 105th Congress at a special event 
held in the Supreme Court on December 3rd.
    I have mentioned only a few of the many achievements of the 
Center's programs that you have been supporting in civic 
education. The exchanges with other nations have involved 
teachers from the United states working cooperatively in 
training programs here and abroad with their peers in the 
nations I have mentioned. American educators have brought their 
knowledge and experiences home with them. They have enhanced 
their capacity to help American students appreciate their 
heritage of a system of ordered liberty, but also to develop a 
deeper understanding of it and increase capacity to participate 
competently and responsibly in our political system.
    This program has been funded, the domestic program, at $4.5 
million for a number of years. We appreciate that level of 
support. But we would great appreciate an increase of $1 
million to help us expand it at State and local levels.
    I appreciate your consideration of this request. I was just 
told, by the way, that the winning team from Kentucky this 
year, that will be here from the end of April, is from your 
Congressional district.
    [The prepared statement of Charles Quigley follows:]

[Pages 554 - 566--The official Committee record contains additional material here.]


    Mrs. Northup. That is exactly right. I am delighted to have 
you here today. I am familiar with the program and know how 
much it means to those students. Thank you very much.
    Mr. Quigley. We did not rig it. [Laughter.]

                              ----------                              

                                         Wednesday, April 16, 1997.

                                WITNESS

HENRY R. MAROCKIE, COUNCIL OF CHIEF STATE SCHOOL OFFICERS

    Mrs. Northup. The next speaker is Dr. Henry Marockie, the 
State Superintendent of Schools in the West Virginia Department 
of Education. Welcome.
    Mr. Marockie. Madam Chair, thank you very much for the 
opportunity to be before you and represent the State 
Superintendents and Commissioner from around the country, on 
behalf of the 1998 appropriations.
    At the outset, let me thank you sincerely for all the work 
that was done last year in bringing together the agreement with 
the Senate to fulfill the funds that were necessary.
    We would really encourage you to look at the funding for 
1998 in the same way in which it was viewed last year, that is, 
an increase in the appropriation of about $4 million, because 
of the simple fact that across the country, we are receiving 
information about rapidly increasing enrollments, the need for 
preparation of hundreds of thousands of teachers who are going 
to provide the education for those young people, and the advent 
of learning technologies in the classroom, something that is 
unique, never had it before, except for in the last couple of 
years.
    I might add a personal note there, in West Virginia, we 
have been moving in that direction for the past eight years. 
Some 20,000 computers now are in the classrooms across the 
State in the elementary schools, and about 15,000 teachers who 
have had the need for training. I can assure you that it works.
    The test scores indicate dramatic increases for not only 
regular children but for at-risk students. The last fourth 
grade NAEP scores revealed that the minority students in West 
Virginia are the highest achieving minority students in the 
country. The improvements made in the fourth grade reading 
scores, with two other States, are the most improved States in 
the country in terms of basic skills.
    So the advent of the new initiative of technology has 
dramatic impact across the country in terms of what it can do.
    The third year of the elementary-secondary program for the 
Federal level we believe is dramatically working. Test scores 
across the country are improving in NAEP, and we encourage you 
to continue with that participation.
    You have provided the initiative in three major programs: 
America's Schools Act, Goals 2000 Act and Schools-to-Work that 
allow not only those initiative, but you allow us to link those 
with State initiatives and State monies to make major impact.
    One of those we now have waivers, there are 12 States in 
the country who have made the commitment to the Department of 
Education who can now literally waive Federal requirements and 
State requirements in their own States in order to make the 
horizons better, the horizons bigger for young people all 
across those areas.
    I can share with you that most of the States in the country 
have adopted voluntary standards. They are all higher than 
where we used to be. They are ratcheting up the standards. And 
that is applying to not only regular youngsters, but for at-
risk youngsters. There is increasing information now that 
youngsters who are at risk are achieving at higher levels than 
they ever have before. A lot of that is because of the 
provisions that you have provided in Goals 2000 where we have 
been able to even cross district lines in order to make 
programs better.
    In terms of Title VI, where you have allowed us the 
initiatives to be able to be more flexible in how we operate 
across the schools, the Title III program for professional 
development, probably the most profound of all in the area of 
technology, because they are so dramatically linked together if 
we are really going to make an impact across the country. In 
West Virginia, that has been one of the saviors.
    The biggest one, however, Chapter I of the Elementary-
Secondary Education Act, we have been able to link that to the 
technology program. That is why we are convinced that we have 
made such a dramatic improvement in the reading level 
achievement of fourth graders, because we have been able to 
focus that on the at-risk youngsters of Chapter I.
    In summary, let me say that the adequate increases are more 
in line with the increases of last year. We seriously would ask 
you to look at the Individuals with Disabilities Act, the 
Perkins Vocational Act, what is happening with high schools at 
work programs, schools-to-work programs, building partnerships 
with the business communities is making major differences in 
the lives of young people. We have numerous examples in the 
State of West Virginia of, once they get involved in that, they 
made dramatic increases in their academic performance.
    So in summary, let me say that while many experiments are 
going on across the country, charters, vouchers and so forth, 
the Federal initiative is making large scale improvements all 
across the country, and we commend you for that, and encourage 
your continued participation in that area.
    [The prepared statement of Henry Marockie follows:]

[Pages 569 - 577--The official Committee record contains additional material here.]


    Mrs. Northup. Thank you very much.
    Mr. Marockie. Thank you.

                              ----------                              

                                         Wednesday, April 16, 1997.

                                WITNESS

HARRIS L. COULTER, EMPIRICAL THERAPIES, INC.

    Mrs. Northup. Next I would like to ask Dr. Harris Coulter, 
President of Empirical Therapies, Inc., to make his 
presentation. Good morning, Dr. Coulter.
    Mr. Coulter. Good morning. Thank you very much for inviting 
me to speak here.
    I am a little bit at a loss, because I have been given five 
minutes to address a $100 billion issue in the American medical 
economy. It is impossible to be convincing on a subject as 
large as that in five minutes. What I will try to do is get you 
curious to read my written testimony, perhaps.
    You will be encouraged by the fact that I am not asking you 
for any money.
    My name is Harris Coulter, I am the author of a book called 
DPT: A Shot In the Dark, co-authored with Barbara Lowe Fisher. 
This book was published in 1985. It marked the beginning of a 
general awareness in this country of the dangers of the 
childhood vaccination programs. Namely, that these programs 
have a dark side, in the sense that many children suffer from 
vaccines, that was basically swept under the rug prior to the 
time our book appeared.
    Just how large the extent of this damage is is still a 
matter of dispute. The Congress adopted a compensation program 
in 1986, mainly as a result of the outcry provoked by our book. 
To date, this compensation program has paid out just under $1 
billion, $1 billion, in compensation to the families of 
children who have been vaccine damaged.
    Since the Federal Government and its various health 
agencies promote these vaccination programs very vigorously, 
they are not exactly falling all over themselves to criticize 
these same programs which they promote. For that reason, we do 
not know yet what the full extent of the damage from 
vaccination programs is.
    What I want to suggest to you today is that diabetes is 
part of the whole spectrum of vaccine damage, specifically Type 
I diabetes, the insulin-dependent type diabetes, which 
typically affects children at a very early age and up into 
adolescence. There are about 13 million diabetics in the United 
States, up from 600,000 in 1946, for reasons which no one can 
understand. The population of the country has doubled since the 
1940s, but the number of cases of diabetes has gone up 20 
times.
    The bill for treating these 13 million diabetics is over 
$100 billion, I say billion, and every year. Type I diabetes 
constitutes 15 percent of these cases. Since their treatment is 
more expensive than the treatment of Type II diabetes, which 
typically affects adults later in life, the total bill for 
treating Type I diabetes in this country is about $30 billion a 
year.
    Much of this is paid by the Federal Government in the form 
of Medicaid, Medicare. Diabetics on Social Security, diabetics 
who have had to retire prematurely and are disabled. Therefore, 
I think the Appropriations Committee should be interested in 
this matter.
    I would like to give you two interesting statistics. One, 
diabetes is a particularly serious disease among the American 
black population. The death rate for diabetes among American 
blacks is two to three times as great as it is for American 
whites.
    Statistic number two. The incidence of diabetes in the 
Armed Forces of the United States is enormously higher than it 
is in the population at large. The disparity between blacks and 
whites in the Armed Services is as great or greater than it is 
in the population at large.
    That is to say, the incidence of Type I diabetes in the 
population, among black and white service men and service 
women, is six times as high as it is for the population at 
large. This becomes worse as the service men and women grow 
older.
    In the age range 30 to 39 years, the incidence for white 
men and women is eight times higher than the population at 
large, whereas the incidence for black men and women is a 
stupefying 22 times higher than for the population at large.
    This is an extraordinary statistic. We are talking about 
people who volunteer for the Armed Forces and are thereby 
presumably entire healthy and diabetes free. Because they would 
not be accepted as volunteers if they had diabetes. Yet after a 
few years in the Armed Forces, you see these enormously high 
incidence of diabetes.
    We feel that the reason for this is the enormous number of 
vaccinations which soldiers, sailors and airmen get in the 
United States.
    Mrs. Northup. I am going to need you to summarize.
    Mr. Coulter. Yes, indeed. I realize, as I said, it is 
impossible to deal with this adequately in five minutes.
    Let me just say that I have in my written testimony 
suggested five or six action items which could be pursued. One 
would be to do epidemiological study of the soldiers, sailors 
and airmen who have diabetes and have acquired it in the Armed 
Services. They are there, they are an easy population to reach. 
We could easily find something more about diabetes from doing 
that type of research.
    Thank you very much. I appreciate the opportunity to speak 
here.
    [Clerk's note.--Information required pursuant to clause 
2(g)(4) of Rule XI of the Rules of the House of Representatives 
was not received from this witness or from an entity 
represented by this witness]
    [The prepared statement of Harris L. Coulter follows:]

[Pages 580 - 584--The official Committee record contains additional material here.]


    Mrs. Northup. Thank you.
    Now, Representative Payne, I think you are going to make 
our next introduction. Welcome to this subcommittee this 
morning.
                              ----------                              

                                         Wednesday, April 16, 1997.

                                WITNESS

ALICE BARNETT, CITY OF NEWARK, NJ

    Mr. Payne. Thank you very much. On behalf of our City of 
Newark, prior to coming to the United States Congress, I served 
on the municipal council of the City of Newark, and therefore 
became very involved, as you might expect, in the affairs of 
the City.
    It is certainly a special honor for me to introduce Ms. 
Alice Barnett, who is the Director of Newark's Department of 
Health and Human Services. Ms. Barnett is here to speak today 
about one of our most critical needs in the City and one of our 
top priorities, the epidemic in teenage pregnancy and the 
attempt to have teenage pregnancy prevention and also low birth 
weight babies projects.
    Unfortunately, Newark ranks among the highest cities in the 
country in teenage pregnancy. Low birth weight babies and 
infant mortality is also very high, just as in other urban 
areas. We also have a high rate of HIV and AIDS, TB and 
substance abuse among teenagers. So this project could be a 
bright future for Newark's young people.
    Ms. Barnett has done an outstanding job in just the year or 
so that she has taken over the directorship of the health 
department. We are very pleased with what she has been able to 
accomplish, and we would appreciate anything the committee 
would be able to do.
    Mrs. Northup. Welcome, Ms. Barnett. You have five minutes. 
I will try to give you a 30 second warning.
    Ms. Barnett. Thank you very much.
    Good morning, Madam Chair. On behalf of the City of Newark, 
New Jersey, I appreciate the opportunity to appear before you 
today.
    As Congressman Payne has indicated, my name is Alice 
Barnett. I am the Director of the Newark Department of Health 
and Human Services.
    I am here today to urge your support for a very important 
initiative to reduce teen pregnancy and to provide a 
comprehensive prevention, intervention and case management 
program to reduce infant mortality and low birth weight babies. 
The City of Newark, like many urban areas across the country, 
is facing a host of extraordinary public health challenges. We 
are unique, however, in that our high rates of teen pregnancy 
and infant mortality are matched by corresponding increases in 
the incidence of HIV and AIDS, tuberculosis and substance abuse 
among our adolescents.
    I am respectfully requesting your assistance with the ever-
escalating rate of teenage pregnancy in an already seriously 
at-risk and compromised adolescent population. The City of 
Newark has already implemented, without Federal resources, a 
comprehensive prenatal program. We have also implemented 
through various maternal and child health consortia several 
programs to promote early prenatal care for adolescents.
    We know, however, that the complex issue of adolescent 
pregnancies and adolescent sexuality requires a far greater 
innovative response. We need to and we must provide sex 
education information while we are promoting abstinence for 
girls and boys.
    We must urge the reinforcement of this message by every 
adult, every parent, every school health education program and 
class, every child protection agency, every church and mosque, 
every athletic and social service agency, and each volunteer 
and mentor in our city. Our task requires a city-wide united 
effort. We must capture the imagination of our young children 
and redirect their energies and their focus.
    Teaching abstinence is useless if it is directed only at 
the few who are readily willing to hear the message. Many of 
our teens are already sexually active. Many are already 
involved with drugs. Many are already infected with HIV.
    We must encourage abstinence through a very urban, cutting 
edge, uniquely Newark program that permits young men and women 
to reinvent themselves, to put on the armor that permits you at 
16 to refrain from sexual activity and still be the 1990s 
version of cool. We must encourage our teens to adopt a new and 
healthy lifestyle and outlook, a bright futures outlook.
    Through this new initiative, we must reach out to the 
adolescent most at risk, the homeless, the abused, and the 
adolescent involved with the juvenile justice systems and the 
alternative school system. We realize that such initiatives are 
not new or unique. What is unique is the level of commitment 
from this city and its core health education and social service 
providers. We have always had the support of our maternal and 
child health consortia.
    For this effort, however, we have secured the support of 
the institutional and community based agencies that convened 
for our empowerment zone application planning process. Our 
proposal in fact seeks to empower the adolescent to refrain 
from early sexual activity and learn the public posture that 
enables continued abstinence through adolescence to marriage.
    We seek also to create an atmosphere of trust for our 
adolescents. Pregnant teenagers must learn that caring, 
responsive adults must be immediately informed of unintentional 
pregnancies. This would then facilitate the early first 
trimester entry of adolescents into a prenatal care system, the 
critical entry point for good birth outcomes.
    The city has already secured the support of a host of local 
partners, including the Newark Division of Health, the Newark 
Public Schools, AD House, the Division of Public Welfare and a 
major hospital in our area. We are asking you to consider 
discretionary assistance so that we may focusespecially on this 
initiative to reduce teen pregnancy by promoting abstinence as the 
preferred choice of Newark teenagers, and for pregnancies that do 
occur, with their corresponding poor infant outcomes because of delayed 
prenatal care, a comprehensive program consisting of the early 
identification of at-risk adolescents, education and case management.
    Accordingly, I would ask you to consider supporting this 
worthy initiative with $900,000 in discretionary assistance to 
help us give Newark's teenagers and its infants a healthier 
start.
    Thank you very much. It was a pleasure to be before you 
today. We urge you to provide the funding needed to undertake 
the demonstration effort we have outlined, and give Newark 
adolescents a brighter future.
    Thank you.
    [The prepared statement of Alice Barnett follows:]

[Pages 588 - 590--The official Committee record contains additional material here.]


    Mrs. Northup. Thank you. Best wishes for every success.

                              ----------                              

                                         Wednesday, April 16, 1997.

                                WITNESS

SYLVIA P. FERNANDEZ, HEALTH PROFESSIONS AND NURSING EDUCATION COALITION

    Mrs. Northup. We have held off with the next presentation, 
because my colleague, Representative Bonilla, very much wanted 
to be here to greet our presenter and to introduce them. That 
is not going to be possible. He has been held up.
    He has asked me to welcome you today. Next, we have Dr. 
Sylvia Fernandez, she is the Director of the Office of Special 
Programs at the University of Texas Health Science Center. 
Welcome, and I am sorry that it could not have been 
Representative Bonilla to greet you today.
    Ms. Fernandez. I understand. Thank you, Madam Chair.
    I am Sylvia Fernandez, and I am Director of the Office of 
Special Programs at the University of Texas Health Science 
Center in San Antonio. I am here on behalf of the Health 
Professions and Nursing Education Coalition, which is an 
informal alliance of over 40 national organizations dedicated 
to educating health professionals.
    HPNEC works to ensure continued support for the health 
professions and nursing education programs that are authorized 
under the Title VII and Title VIII of the Public Health Service 
Act. HPNEC members believe that these programs are critical to 
our Nation's efforts to provide health services to underserved 
communities.
    The members of HPNEC thank the subcommittee for restoring 
funding for these programs in 1997. In particular HPNEC thanks 
Representative Bonilla for his leadership and support of these 
programs. The members of HPNEC are extremely concerned that if 
the Administration's budget is enacted, this Nation will not 
have the sufficient health professionals and nurses to meet 
future public health and primary care needs.
    The Administration is now proposing the virtual elimination 
of critically important programs in primary care and nursing 
education, and a more than 50 percent reduction in funding for 
programs that assist rural or inner-city underserved 
communities. HPNEC urges Congress to reject the 
Administration's efforts to cut the funding of these programs 
and we recommend the appropriation of $302 million for Title 
VII and VIII in 1998.
    Why is this important? Because the list of students who 
have benefitted from these programs is extensive. Let me just 
share two examples of how some of these programs have enabled 
students to make a difference. It has made a difference not 
only in the lives of our students, but of those that are 
receiving the health care from the professionals they are 
training.
    Concepcion Martinez is a first year medical student who 
credits the Hispanic Center of Excellence for giving her that 
much needed jump start through the Summer MCAT program that 
enabled her to get into medical school. On the other end of the 
spectrum, there is a Dr. Alfredo Lopez who is about toset up a 
practice in his own hometown of McAllen, Texas, where he is completing 
his training at the Family Practice Clinic. He now serves as that 
important mentor and role model for our students.
    There are stories like these in all of our schools, the 
dental, nursing, allied health, graduate school of biomedical 
sciences, and nursing school. The key word for us is access. 
These programs provide students with access to educational 
opportunities, access to role models and mentors who have made 
it through the educational pipeline and access to career paths 
that allow health professionals to work in underserved areas.
    As we at the Health Science Center greet students who have 
made it through that pipeline, we are also reaching out to 
thousands of middle and high school students who are making 
those critical decisions about their future. We use our 
students and our residents to motivate and to plant the seeds 
for these students. Many of our students are not only the first 
generation to attend college; in many cases they are the first 
generation to even finish high school.
    These programs have now opened doors for our students by 
giving them exposure to scientists and to health professionals.
    Ladies and gentlemen, my point is that the two most 
important words here are access and equity. Without adequate 
funding for these programs, minority and disadvantaged students 
would not have access to a health professions education. These 
programs provide many of our students that necessary connection 
to the resources that give them the jump start into the health 
profession.
    Equity denotes fairness and an even playing field, which 
many of our students have not had. It is my privilege to work 
in an institution where we see the impact of programs that have 
touched the lives of students who are our future health care 
providers and who will have a responsibility of providing 
access and equity to the future.
    In closing, Title VII and VIII programs meet the Nation's 
need for an expanded supply of primary health care providers 
and public health professionals. The drastic cuts in 
professional education puts the public health at risk. In this 
rapidly changing health care environment, it is crucial that 
these programs receive an appropriation of at least $302 
million for 1998 to meet their mission.
    The members of HPNEC appreciate the opportunity to comment 
on these programs, and we look forward to working with the 
subcommittee in support of them. And I thank you for the 
opportunity to be here. I am really sorry that I missed 
Representative Bonilla, but it is nice being here.
    [The prepared statement of Sylvia Fernandez follows:]

[Pages 593 - 599--The official Committee record contains additional material here.]


    Mrs. Northup. Thank you. We appreciated your testimony.
    That concludes this morning's testimony before this 
committee. We will recess until 2:00 o'clock. Thank you very 
much.
                              ----------                              

                                         Wednesday, April 16, 1997.

                                WITNESS

ARNOLD MITCHEM, NATIONAL COUNCIL OF EDUCATIONAL OPPORTUNITY 
    ASSOCIATIONS

    Mr. Bonilla [assuming chair]. The subcommittee will come to 
order.
    My name is Henry Bonilla. I represent South and West Texas. 
Mr. Miller, of Florida, was going to be substituting for 
Chairman Porter during this hearing, who is actually injured. 
Mr. Miller is on his way and will be filling in as soon as he 
arrives. But I figured I would go ahead and get started.
    I would like to offer a special welcome to our first 
witness today, Doctor Arnold Mitchem. We know him as Mitch. I 
have gotten to know Mr. Mitchem over the years because of the 
great work he does on educational programs, specifically the 
TRIO program which is a very, very important program that 
allows young people from economically depressed areas, families 
in some cases where there has not been anyone allowed the 
privilege to seek higher education before, it allows them the 
opportunity to do that through the programs. It really produces 
good results in the communities.
    I just want to express my gratitude for all the work you 
have done on TRIO. We have worked hand-in-hand on this project 
for several years now. I want to give you a special welcome 
today, and we are anxious to hear your testimony.
    Mr. Mitchem. Thank you very, very much, Mr. Bonilla. It is 
a real pleasure to be here this afternoon and to have you in 
the chair, sir. I want to thank you and the other members of 
the subcommittee not only for supporting a real increase for 
TRIO in fiscal year 1997, but also for defending that increase 
in fiscal year 1997 against attempts in the Senate to take away 
what you all had worked so hard to provide for the TRIO 
programs.
    This afternoon I want to make three brief points. First of 
all, we are proposing a 25 percent increase in TRIO. That would 
move the appropriation from $500 million to $625 million. We 
estimate that an additional 186,000 low-income youth and adults 
would be served by the programs if, indeed, we could reach that 
figure. By the way, just to give you a baseline in terms of who 
is currently served by TRIO, currently TRIO is serving 700,000 
low-income youth and adults, 39 percent of those individuals 
are white, 36 percent are black, 16 percent are Hispanic, 5 
percent are Native American, and 4 percent are Asian, and 
roughly about 20,000 of these individuals are disabled.
    We feel by realizing this sort of increase, based on our 
estimates, we would increase the number of eligible to roughly 
about 8 percent. We are below 8 percent now.
    The reason we are being so aggressively, frankly, is 
because the TRIO programs work. In 1990, President Bush used 
this committee to request funds to do an evaluation of the TRIO 
programs to find out exactly whether or not they were making a 
difference in our society. Much or most of thoseresults are now 
in. While many of us, including myself, believed for a long time that 
these programs worked based on a lot of anecdotal evidence as well as a 
lot of monographic evidence in some very fine institutions around this 
country, like the University of Maryland, Hope College in Michigan, 
Marquette University in Milwaukee, and other places, we now have a more 
broad-based scientific basis for our optimism and confidence in these 
programs.
    Let me just very briefly share with you some of the 
findings that have been made available to the public. First of 
all, in the case of student support services, they have found 
that this particular program has had a positive and 
statistically significant effect on three separate student 
outcomes in terms of grades, in terms of credits earned, and in 
terms of college retention, all of which we feel is very 
significant.
    Equally important, the studies have also noted that the 
effects of this treatment, the student support services 
program, goes beyond the first year that these effects persist. 
That is, they help the individuals attain the baccalaureate 
degree which is so critical in terms of low-income youngsters. 
You may refer to the chart on the last page of my testimony 
that shows the differentials among income groups in terms of 
who earns a baccalaureate degree and who does not.
    More importantly, these findings reinforce other findings 
of studies that were done in an earlier period. For example, we 
knew back in the late 1980s that the student support services 
programs made a difference in the first year in terms of 
persistence and completion. Now we know that they make a 
difference beyond that.
    Now let me turn to Upward Bound. Let me just summarize some 
of the findings of that study that was done by Mathematica. 
This was a study again commissioned by the Department of 
Education. There, they found that Upward Bound has early 
positive impacts on students' educational expectations and 
academic course takings. It found that Upward Bound also has a 
positive impact on parents' educational expectations for their 
children, which I think is a very key and important finding 
because the attitudes of the parents, the sentiments of the 
parents make a difference in terms of the motivation of the 
students. They also found that Upward Bound increased the 
number of credits students earned during their first year of 
high school, again which we think is significant.
    Also, they made the point that the Upward Bound programs in 
this country are providing a rich and challenging academic 
program and that is the central focus of most Upward Bound 
projects. I think that point is so important and I just want to 
read to you very briefly a paragraph from the study titled 
``Nature and Content of Courses.'' They found that more than 
two-thirds of the Upward Bound projects focus on instruction 
that is not remedial. I think that is a key finding--that is 
not remedial. These projects either support the curricular 
content in the college preparatory program or the high school, 
or they adopt an enrichment focus that teaches content the 
schools are unlikely to teach because of lack of resources, 
either human or fiscal. This is very important in rural areas, 
as you well know. Most projects offer courses that reflect the 
traditional pre-college preparatory curriculum and a wide range 
of subjects. I that indeed speaks for itself.
    My final point is this. It seems to us that this is the 
year that we need to seize this opportunity. The Department of 
Education is conducting two competitions this fall; one in 
talent search, the other in educational opportunity centers. 
Whatever dollars, particularly the additive dollars, if indeed 
we get an increase, will indeed go directly into that 
competition in talent search and educational opportunity 
centers. Talent search is such a key program because it reaches 
further down the educational pipeline than any of the other 
TRIO programs. It goes down and works with youngsters in the 
sixth, seventh, and eighth grades, 11, 12, and 13 year-olds, as 
well as those in high school, as well as dropouts.
    Mr. Bonilla. Mr. Mitchem, if you could kind of wrap things 
up because we have a lot of people to testify today. I 
apologize.
    Mr. Mitchem. I understand, sir. Basically, my point is that 
with talent search we can get to youngsters and provide them 
the pre-collegiate base so indeed they can graduate from 
college. In the case of EOCs, we can use those programs to help 
us in terms of welfare people in trying to move them back into 
the workforce.
    I apologize for going too far, being too enthusiastic. 
Thank you for your patience, sir. It is a privilege to be here.
    [The prepared statement of Arnold Mitchem follows:]

[Pages 603 - 612--The official Committee record contains additional material here.]


    Mr. Miller [assuming chair]. Thank you for your testimony. 
Since we only have a short amount of time, I apologize to you 
because we could talk about this for a lot longer time.
    Mr. Bonilla, do you have a comment or question?
    Mr. Bonilla. Just a comment, Mr. Chairman. Just in closing, 
Doctor Mitchem, we would like to again thank you for being 
here. A lot of us on both sides of the political spectrum here 
recognize the importance of TRIO. We are going to do everything 
we can to continue helping that educational program and the 
others that you are working with as well.
    Mr. Mitchem. Thank you very much. We certainly know that 
and this subcommittee has demonstrated that and we appreciate 
it. Thank you, sir.
    Mr. Bonilla. Thank you, Chairman.
    Mr. Miller. Thank you.

                              ----------                              

                                         Wednesday, April 16, 1997.

                                WITNESS

DANIEL V. YAGER, LABOR POLICY ASSOCIATION

    Mr. Miller. Next, we have Mr. Daniel Yager, General Counsel 
for the Labor Policy Association.
    I apologize for arriving late and I thank you, Mr. Bonilla, 
for starting. I do not know if you made the announcement, but 
Mr. Porter has some back problems and is not able to be here 
today.
    So let us proceed with Mr. Yager.
    Mr. Yager. Thank you very much, Congressman. My name is Dan 
Yager, and I am Vice President and General Counsel of the Labor 
Policy Association. I will try to stay well under my five 
minutes in view of the long list of witnesses you have got 
today.
    Mr. Miller. Thank you. We would appreciate that.
    Mr. Yager. I want to start by commending the subcommittee 
for paying extremely close attention to the actions and 
policies of the National Labor Relations Board in recent years. 
This is an agency that I think has really become kind of a 
rogue agency. I think that is largely because it has not gotten 
a lot of public and political attention. I think that this 
subcommittee and the authorizing committee have done a very 
good job of giving it the attention that it deserves.
    I know that there has been a lot said, and I know that you 
are very much aware of the problems with fairness, the lack of 
fairness at the Board. We documented that in a book that I 
wrote, ``The NLRB: An Agency in Crisis,'' which I believe I 
have provided to you in advance. So I will not go into all the 
substantive problems at the Board because I know a lot of that 
are issues that really can only be address in the authorizing 
committee. I think an issue that you all should consider as you 
take a look at the 6.7 percent increase that the agency has 
asked for is a very serious problem at the Board that I think 
is at the base of a lot of the substantive problems, which is a 
total breakdown in the nomination process.
    This is a breakdown that is not just a recent occurrence; 
it goes back to 1980. I have attached a chart to my testimony 
that shows that over the last 16 or 17 years it has been a 
very, very rare occasion that the Board has been completely 
staffed by members who were confirmed by the United States 
Senate. That is not the way it is supposed to work. Look at the 
situation right now. It is about as bad as it has ever gotten. 
We have a five-member Board, we have only one member who has 
been confirmed by the Senate, and that is Chairman Gould. There 
are two other members who were recess appointees, and there are 
two vacancies. If nothing happens by the end of the fiscal 
year, the funding that you are considering, the Board would be 
totally staffed by recess appointees because Mr. Gould's term 
expires at the end of next year.
    I think that this is an intolerable situation. I am not 
going to say that management does not share part of the blame 
for that. I think it has been extremely contentious over the 
last 16 years. Management has spent all its energy trying to 
fight labor's nominations, and vice versa. As a result, I think 
the political folks have sort of walked away from the situation 
because there's not a heck of a lot of mileage in it for them 
to get involved in those kinds of dogfights.
    I think that if this situation is allowed to continue and 
fester, the situation at the Board will only get worse. I think 
one of the things that you all ought to think about is whether 
or not there is not some way through the appropriations process 
that you can force a solution to this problem by somehow tieing 
the funding of the Board to whether or not it is either fully 
staffed or primarily staffed by folks who are there under the 
procedures that are supposed to be followed in filling the 
Board.
    I do also want to add that we are extremely supportive of 
the language barring the use of funds for the single facility 
regulations. I know you are familiar with those, so I would not 
spend any time on that.
    I do have one other issue I would like to discuss, which is 
the Department of Labor's procedures for ensuring financial 
accountability of unions. Under the LMRDA, unions are supposed 
to file an annual financial form which is called an LM-2 form. 
These are supposed to be readily available to their members, to 
the public, and they are supposed to ensure the accountability 
of the unions to spending the hard earned dues of their 
members. I will tell you, Congressman, if you were to go over 
there and try to get an LM-2 form on a union, you would find 
the somewhat complicated Rube Goldberg procedures that one has 
to go through to obtain access to these forms. I describe those 
procedures in the testimony. They keep on file some 34,000 
files; you can only go in and get about 5 at a time, and you 
have to know exactly what number to give them. To get that 
number, you have got to go to a book which is not updated. So 
chances are you may never get the information you would like to 
get on that particular union.
    In contrast, under the Securities and Exchange Act, 
publicly owned companies are supposed to file 10(k)s that 
provide all kinds of financial information about the company. 
That is readily available to the public with the Securities and 
Exchange Commission, and it is also available to the public on 
the Internet.
    I would suggest, I know that times are rather lean right 
now, but I would suggest that there may be some value, given 
the concern of this Congress, to the financial accountability 
of labor and how they are spending that dues money. There may 
be some value to directing the Department of Labor thatsome of 
their funding be used to putting this information on-line and making it 
available to the public. It is not now computerized; it is just a big 
stack of files. That is extremely difficult to obtain access to.
    Those are our concerns. I appreciate the opportunity to 
appear before you today.
    [The prepared statement of Daniel Yager follows:]

[Pages 616 - 629--The official Committee record contains additional material here.]


    Mr. Miller. Thank you very much for appearing today. When I 
first joined this committee I was kind of amazed that the NLRB 
has over $180 million budget. When you consider biomedical 
research for cancer, arthritis, or what have you, and then you 
see they are getting $180 million, I said wait a minute, where 
is our priorities. So I appreciate your testimony and your 
information. Thank you very much.
    Mr. Yager. Thank you.

                              ----------                              

                                         Wednesday, April 16, 1997.

                                WITNESS

MARY STECHER, NATIONAL MENTAL HEALTH ASSOCIATION

    Mr. Miller. Our next witness is Mary Stecher. Welcome.
    Ms. Stecher. Good afternoon, Congressman Miller. My name is 
Mary Stecher. I am the Executive Director of Community Family 
Service and Mental Health Center. It is the lead agency and 
fiscal agent for the Community Wraparound Initiative, a 
children's mental health demonstration project in Southwest 
Cook County, Illinois. Thank you for the opportunity to testify 
about the importance of children's mental health and this 
initiative.
    The Community Wraparound Initiative is funded by the 
Federal Center for Mental Health Services and targets three 
socioeconomically diverse townships encompassing 24 school 
districts in the Chicago suburbs. We serve children between the 
ages of 3 and 21 years of age who are either returning to their 
families from out of home placements, like residential centers 
and psychiatric hospitals, or those who are at imminent risk of 
such placement.
    Before I begin my substantive remarks, I would like to take 
a moment to thank both Chairman Porter and Congressman Obey. 
Over the years, both of them have demonstrated courageous and 
unprecedented support for children and youths struggling with 
severe emotional disturbances. Their leadership is making a 
real difference for people with mental disorders and their 
families.
    Ten million children have a mental disorder that interferes 
with their development, and another 2,500,000 are seriously 
threatened by an emotional disorder. Only a fraction of these 
individuals actually receive any care whatsoever. During the 
last five years, the suicide rate for 10 to 14 year-olds in the 
United States increased by 25 percent. It is the third leading 
cause of death for adolescents and young adults age 15 to 24.
    Just five years ago, the children's mental health service 
programs began under the leadership of Chairman Obey. Grants 
are awarded in a competitive process. There are currently 29 
sites in 18 States with operational programs. Unfortunately, 
CMHS is now able to fund only six to eight new initiatives from 
the forty-two applications filed this fiscal year, a funding 
rate of roughly 16 percent.
    Funding for these initiatives is combined with local and 
State matching dollars to achieve local responsibility which 
sustains the programs after the Federal dollars sunset. Data 
from our colleagues in Education indicates that the community-
based approach is successful in maintaining in school 
placements. Behavior, attendance, and academic performance 
improves. The number of days spent out of home over a 12 month 
period has reduced the average hospital stay from 17 days to 6, 
resulting in an estimated savings of $4,400 per child.
    I would like to share what this community-based approachcan 
look like for a child--Annie. Annie's parents divorced when she was 
three. For several years she was shuffled between parents and other 
relatives. At age ten she was sent to live with her father in Iowa 
following a child neglect charge brought against her mother. She became 
a chronic runaway. She was arrested several times for stealing, was on 
probation, failing in school, had major depression, and frequent 
thoughts of suicide.
    Following her second hospitalization, her father petitioned 
the court for foster placement. Between the ages of 12 and 15, 
she was in 8 foster care and/or group care facilities. Child 
welfare wished to return Annie to her father. When Annie's 
father sought help from Community Family Service, they were 
linked to the Wraparound Initiative.
    Through thoughtful meetings that brought together the child 
welfare worker, probation officer, school personnel, and family 
members a plan developed that allowed Annie to live with her 
paternal grandmother who had always maintained a strong 
connection with Annie. The Wraparound plan stretched the 
conventional boundaries of child welfare and juvenile justice. 
An agreement was forged with Annie that required not only 
regular school attendance and strict rules of behavior, but it 
also required intense collaboration from every entity providing 
service. Annie began individual counselling and a remedial 
program that involved some special education services, but she 
was included in mainstream classes at a neighborhood school.
    Cost for out of home placement for Annie's years of foster 
care were approximately $112,000. This excludes staff time from 
social services and juvenile justice. The cost of the 
Wraparound plan for 18 months have been $4,500. Annie will 
graduate this spring, has been accepted at a local junior 
college, and has maintained a job for six months.
    The projects funded through the Center for Mental Health 
Services are not only lifelines for those it serves, but are 
also demonstrating and guiding how human services must organize 
themselves and work in collaboration with each other. In order 
to implement these new directions more broadly, additional 
public leadership and public-private partnerships are needed. 
Continued funding is critical to ensure that children with 
severe emotional disorders and their families stop being under-
identified and under-served.
    I must say it is an honor as a citizen to appear before 
this committee, and an honor as a professional to have a 
stewardship role in this challenging endeavor. Thank you for 
allowing me to testify on behalf of the Community Wraparound 
Initiative. I will be happy to answer any questions you might 
have for me.
    [The prepared statement of Mary Stecher follows:]

[Pages 632 - 638--The official Committee record contains additional material here.]


    Mr. Miller. Are you with the program in Cook County?
    Ms. Stecher. Yes.
    Mr. Miller. Is this a demonstration project, or does this 
go on and on and on? Is there a limited term to these programs?
    Ms. Stecher. Indeed, it is a demonstration project that has 
been funded for five years. From the very beginning, the 
outcome of the project has been to incorporate different ways 
within existing organizations so that when the projects are 
over, the new learning and the seeding opportunities in the 
community will take place.
    Mr. Miller. Then the community will take it over.
    Ms. Stecher. Exactly.
    Mr. Miller. Great. Thank you very much for coming today.
    Ms. Stecher. Thank you.

                              ----------                              

                                         Wednesday, April 16, 1997.

                                WITNESS

RUSSELL J. HAGEN, NATIONAL COALITION OF STATE ALCOHOL AND DRUG 
    TREATMENT AND PREVENTION ASSOCIATIONS, AND THE LEGAL ACTION CENTER

    Mr. Miller. Next, Mr. Russell Hagen, President and CEO of 
Chestnut Health Systems. Welcome.
    Mr. Hagen. Thank you. Good afternoon, Mr. Chairman and 
members of the subcommittee. My name is Russell J. Hagen. I am 
the Chief Executive Officer of Chestnut Health Systems, a 
comprehensive alcohol and drug treatment and prevention 
provider with facilities in various parts of Illinois, with 
corporate offices in Bloomington. Thank you for the opportunity 
to testify in support of increased fiscal year 1998 funding for 
alcohol and drug treatment and prevention programs in the 
Department of Health and Human Services and Education.
    I am representing today the National Coalition of State 
Alcohol and Drug Treatment and Prevention Associations, which 
is composed of 34 State-based associations of treatment and 
prevention providers in 30 States, and the Legal Action Center, 
a not-for-profit law and policy organization focusing on 
alcohol, drug, and AIDS issues.
    Through Federal and other funds, these programs represented 
by these associations provide services to families with parents 
who are addicted, pregnant women with alcohol and drug problems 
who want a better future for their children, and addicted 
individuals in the criminal justice system who want to start a 
new life.
    Thank you, Mr. Chairman and members of the committee, 
forlast year's increase in alcohol and drug treatment, prevention and 
research programs. Providing strong support for alcohol and drug 
treatment and prevention, education, and research is imperative to 
maintaining and improving the health and the well-being of our Nation. 
These programs effectively decrease alcohol and drug use, crime, health 
care costs, AIDS, and welfare dependence.
    Let me begin by telling you about alcohol and drug 
treatment and prevention needs and resources in Illinois. 
Illinois is a microcosm of this Nation. Illinois communities 
span the continuum from the most densely populated urban areas 
to the most sparsely populated rural areas. Regardless of their 
size and demographics, all of these communities have alcoholism 
and drug dependence in common.
    The Illinois Department of Alcoholism and Substance Abuse, 
DASA, estimates that each year 700,000 adults and 138,000 
adolescents are in need of treatment in the State of Illinois. 
We estimate that our current treatment capacity is about 
130,000. This unmet need is very real to the individuals and 
the families who are attempting to gain access to appropriate 
treatment in a timely manner, and it is certainly very real to 
those of us who provide that treatment and ask them to wait 
weeks and sometimes months for their turn. In the face of this 
overwhelming need for treatment and prevention services, 
inadequate resources, Illinois providers and our counterparts 
across the Nation work diligently to do the best we can within 
our current funding limits.
    I am aware of this committee's keen interest in scientific 
research documenting the effectiveness of treatment and 
prevention. I am privileged to lead an organization that is 
committed to this type of research. We are currently engaged in 
a foundation-funded longitudinal outcomes research study with 
another provider, Interventions, that will evaluate the 
effectiveness of 30 different treatment programs across our two 
organizations. A recent evaluation of DASA-funded programs in 
Illinois found remarkable success in focused populations 
including subgroups of women, homeless, individuals with dual 
diagnosis of mental illness. For example, fifth to eighth 
graders participating in the Logan Square Prevention Program in 
Chicago decreased their gang membership by 17 percent, weapon 
carrying by 32 percent, involvement in drug selling by 22 
percent. Mr. Chairman, I will ask that copies of this study be 
included in the record.
    I am pleased to tell you that Illinois providers are in the 
forefront of developing innovative, outcome oriented studies 
that clearly and decisively indicate that treatment and 
prevention work. When I say that treatment and prevention work, 
I mean from the day an individual enters treatment and the 
first time an individual says no to alcohol and drugs, there 
are savings in both lives and dollars.
    The following are our recommendations. To provide these 
essential services in Illinois and throughout the Nation we 
need your support. We urge Congress to adopt the following 
increases in fiscal year 1998 funding for alcohol and drug 
prevention, treatment, and research programs in the Substance 
Abuse, Mental Health Services Administration, Department of 
Education, and National Institutes of Health which are a wise 
investment and will provide desperately needed services in the 
communities across our country. For the Substance Abuse 
Prevention and Treatment block grant, $1.5 million, a 10 
percent increase over fiscal year 1997, including the $50 
million increase appropriated in the Contract With America 
Advancement Act, $171.6 million each for the Center for 
Substance Abuse Treatment and the Center for Substance Abuse 
Prevention for knowledge development application activities, a 
10 percent increase over fiscal year 1997; and $620 million for 
the Safe and Drug Free Schools and Communities Act as proposed 
by the Administration, an 11.5 percent increase over fiscal 
year 1997; and $233.2 million for research in the National 
Institute on Alcohol Abuse and Alcoholism; and $538.3 million 
for the research done in the National Institute of Drug Abuse, 
a 10 percent increase.
    The treatment and prevention gap in our communities is 
growing. I have included information in my testimony in this 
regard. I would like to deal briefly with two other issues, one 
related to welfare reform.
    Mr. Miller. Considering the time factor, if you could kind 
of pull things together.
    Mr. Hagen. All right. I will do this very quickly. 
Basically, I think that it is absolutely essential that alcohol 
and drug treatment be included in our work towards welfare 
reform. For individuals in this population treatment means 
going back to work. Adequate alcohol and drug treatment are 
absolutely essential if welfare reform is to be successful in 
this country. I believe it is impossible that without treatment 
these individuals will even get a job, let alone keep a job, 
and support their children in the future. It is absolutely 
essential that we do this.
    I have included in my remarks as well as for the record a 
number of studies that demonstrate the effectiveness of both 
treatment and prevention. The most recent study, a National 
Treatment Improvement Evaluation study clearly documents that 
the provision of treatment and prevention services will provide 
sustained reduction in drug use.
    Mr. Chairman, in conclusion, I would like to say that 
alcoholism and drug dependency continue to be one of our 
Nation's most serious and costly health problems. The programs 
that I have discussed this afternoon are the first line of our 
defense to protect our children from developing alcohol and 
drug problems, as well as funding of last resort to treat 
Americans who already have developed alcohol and drug problems. 
As a society, we must keep these programs strong. Thank you 
very much.
    [The prepared statement of Russell Hagen follows:]

[Pages 642 - 652--The official Committee record contains additional material here.]


    Mr. Miller. Thank you for your testimony, and thank you 
also for cooperating in the requirement of providing your 
Federal funds report attached to your statement. I appreciate 
your willingness to do that. Thank you very much.
    Mr. Hagen. Thank you.
    Mr. Miller. I am sorry about the time constraint we always 
have to operate under. But we are going to try to hold as close 
as we can to the five minute rule. There is an expected vote on 
the floor of the House around 4:00. If I have to go vote, we 
will have to take a long recess, and so I am hoping we can meet 
that goal of concluding before that time.

                              ----------                              

                                         Wednesday, April 16, 1997.

                                WITNESS

MARSHALL A. LICHTMAN, M.D., LEUKEMIA SOCIETY OF AMERICA, INC.

    Mr. Miller. We now have Doctor Marshall Lichtman, Executive 
Vice President of research and medical programs of the Leukemia 
Society of America. Welcome, Doctor.
    Dr. Lichtman. Thank you, Mr. Chairman and members of the 
committee, for the opportunity to comment on funding for 
biomedical research. I am Professor of Medicine and Biophysics 
at the University of Rochester, and Executive Vice President 
for research and medical programs of the Leukemia Society of 
America, a not for profit, voluntary health agency representing 
the health and medical research interests of more than 500,000 
patients and their families with leukemia, lymphoma, or 
myeloma.
    It may not be fully appreciated that these three closely 
related cancers strike over 100,000 Americans each year and 
kill over 57,000 each year. Indeed, in the aggregate, they are 
the second most frequent cause of death from cancer after 
cancer of the lung.
    The Leukemia Society will invest $14 million on research in 
the year beginning July 1997. Over 200 young scientists 
conducting basic research are supported annually by this 
program. This funding in most cases compliments funding from 
the National Cancer Institute, providing an important 
cooperative and coordinated effort by a private and Federal 
agency.
    I finished medical school 37 years ago with an interest in 
the problems posed by leukemia and lymphoma. My initial 
clinical experiences were devastating. There was no effective 
treatment and patient survival for a few months was considered 
an achievement. The improvements in treatment have been 
impressive. The cure rate for childhood lympositic leukemia was 
virtually zero 50 years ago. The first glimmer of hope emerged 
from a single new drug introduced in 1948. This initiated a 
period of progress such that today over 70 percent of children 
enter long-term remission, many of whom we believe are cured. 
Cure rates of young and middle-aged individuals with Hodgkin's 
disease and some lymphomas are also in the same range.
    These improvements have been the result of broad-based 
discoveries and innovations in biomedical engineering, 
pharmacology, immunology, genetics, cell and molecular biology, 
virology, transplantation biology, radiation research, and 
other fields. The progress has been driven largely by the 
wisdom and unflagging monetary commitment of our Government. On 
behalf of the Leukemia Society, I offer sincere thanks for your 
taking a leadership role in securing substantial increases in 
NIH funding over the past two years.
    The Leukemia Society of America supports the proposal that 
NIH funding be increased in fiscal year 1998 by 9 percent, a 
level of funding cited as that required to support ongoing 
programs and to invest in promising new research opportunities. 
This is an ambitious goal but the money would be wisely 
invested and in the public good.
    Although the Leukemia Society of America has not endorsed 
resolutions calling for a doubling of the NIH budget or 
proposing the establishment of trust funds for the support of 
biomedical research, we applaud the efforts of Members of 
Congress to think creatively about future funding for research.
    Leukemia and lymphoma are often cited as cancer research 
success stories. Despite the strides we have made in their 
treatment, as I mentioned, more than 57,000 people will die 
this year from these hematologic cancers. For adults with these 
diseases clinical outcomes have improved during the last 20 
years but cures are infrequent. Therefore, our work is far from 
done.
    I do not advocate funding for specific diseases. We have 
confidence that the scientific marketplace will invest in the 
best research ideas and that the leadership at NIH will 
capitalize on new research developments in ways that are most 
beneficial to the American people.
    In consultation with the National Cancer Institute, the 
Leukemia Society broadened its research portfolio in 1995 and 
initiated a translational research program. In response to that 
initiative, over the last two years the Society has received 
over 300 grants proposing new and innovative approaches to the 
management of leukemia, lymphoma, and myeloma. We have been 
able to fund only 44 laboratories that have proposed 
conceptually innovative approaches to treatment, committing 
$4.5 million of our annual research expenditures to that 
effort.
    The Leukemia Society is able to fund only about one in six 
applications to both our basic science and translational 
research programs. Broad progress in translating basic research 
into treatment depends on the commitment of the National 
Institutes of Health. As a result of this Nation's basic 
research investment, there are exciting new approaches for 
improving the treatment of cancer.
    Mr. Miller. I apologize for interrupting, but if you could 
kind of wrap things up so we can stay on schedule, I would 
appreciate it.
    Dr. Lichtman. The potential of translational research is 
great. Immunotherapy of cancer and techniques for modifying the 
genetic basis of cancer are two exciting new treatment 
approaches. We are defining the genetic changes that initiate 
cancer development and confer on cancer cell's resistance to 
drugs. We may therefore be able to intervene in these processes 
to stop the progression of the disease.
    The era of modern treatment of cancer began 50 years ago 
shortly after World War II and we are only part way to our 
goal. With the continued investment in a remarkable 
nationalbiomedical research establishment, the synergistic effect of 
academic, governmental, and industrial research resources, and the use 
of advances already made as a springboard, I am confident we will see 
further dramatic advances in the next decade.
    Thank you for allowing me to meet with you and for your 
kind attention.
    [The prepared statement of Marshall Lichtman follows:]

[Pages 656 - 664--The official Committee record contains additional material here.]


    Mr. Miller. Thank you very much. It is one of the success 
stories but there is obviously a long way to go. I appreciate 
your comments specifically that you do not advocate earmarking 
funding for specific diseases. I think that is something that 
we as politicians should not try to do and we should let the 
medical/scientific community and NIH make those types of 
decisions. I appreciate your statement.
    Dr. Lichtman. I agree with that.
    Mr. Miller. Thank you very much for coming today.
    Dr. Lichtman. You are welcome.
    Mr. Miller. Mr. Wicker, do you have any comments or 
questions?
    Mr. Wicker. No, I do not have anything.

                              ----------                              

                                         Wednesday, April 16, 1997.

                               WITNESSES

MARY ANN QUARANTA, NATIONAL ASSOCIATION OF SOCIAL WORKERS

    Mr. Miller. Next, we will have Mary Ann Quaranta, Dean of 
the Graduate School of Social Service at Fordham. Welcome.
    Ms. Quaranta. Good afternoon, Mr. Chairman. I want to thank 
you for the opportunity to testify on behalf of the National 
Association of Social Workers. NASW is the largest social work 
organization in the world, representing 155,000 professional 
social workers who practice in a broad range of human service 
settings.
    I would like to talk to you briefly today about child 
welfare training, specifically Title IV.B and the 
Administration for Children and Families. Child welfare 
services are among the Nation's most important social service 
programs for children and families. These services include 
family service programs that provide prevention and treatment, 
support for abused and neglected children, foster care, family 
preservation and support, and adoption services.
    According to a 1995 State-by-State survey conducted by the 
National Committee to Prevent Child Abuse, over 3,100,000 
children were reported abused and neglected. Child abuse 
fatalities increased by 39 percent from 1985 to 1995. In my own 
city of New York, the Administration for Children Services 
responded last year to over 53,800 reports of child abuse and 
neglect involving over 88,000 children.
    In 1995, one of these children was six year old Elisa 
Izquierdo who was brutally tortured and killed by her mother. 
Elisa's case was well-publicized after her death. Her death, 
and the thousands of other such deaths, can be prevented. One 
way is to ensure that there are professionally trained child 
protection workers.
    Studies have clearly shown that trained social workers 
obtain better results in dealing with challenging and complex 
cases such as Elisa's. According to the National Commission on 
Children, only 25 percent of child welfare caseworkers have 
social work training, and 50 percent have no training or 
previous experience working with children and families.
    Administered by the Children's Bureau, Child Welfare 
Training, Section 426, Title IV.B of the Social Security Act 
awards grants to schools of social work and other public and 
private non-profit institutions of higher learning to develop 
and improve education, training, and resources for child 
welfare providers. Students receiving Title IV.B traineeships 
for undergraduate or graduate degrees are required to work in 
child welfare agencies following graduation. These funds have 
been invaluable in directing more trained workers into the 
public child welfare field, and, I might add, in providing more 
stability and reducing the turnover that often occurs with 
those who are not trained.
    Despite the proven benefits of this program, funding for 
Title IV.B has declined dramatically from $8,015,000 infiscal 
year 1978 to $2 million in fiscal year 1996. We are deeply grateful for 
this subcommittee's support of increasing funding for Title IV.B to $4 
million for this present fiscal year. I especially want to thank 
Representative Lowey for her leadership in supporting the additional 
funding.
    With escalating numbers of abused and neglected children, 
and the demand for more skilled child welfare workers, NASW 
requests that funding for child welfare training, Title IV.B be 
increased to $8 million in fiscal year 1998.
    Let me begin my comments on social work research by 
thanking you, Mr. Chairman, for your continued leadership in 
securing full funding for NIH. We also thank the subcommittee 
members for their continued support of the Office of Behavioral 
and Social Science Research. As major providers of health care 
services, social workers are particularly concerned about 
ensuring adequate funding for research on high risk populations 
and serious behaviorally related health problems.
    In recent years, NIH has increased support for social work 
research and the development of social work capacity in 
graduate schools of social work. This research is critical in 
helping to inform social workers and other professionals who 
are on the front lines to build empirical base knowledge that 
forms a foundation for more effective social work training and 
practice.
    Mr. Miller. I am going to have to ask you if you can kind 
of speed things to a conclusion. Thank you.
    Ms. Quaranta. The NASA requests increased funding for NIMH 
and the National Institute on Drug Abuse, and urges continued 
support for training more social work researchers and 
increasing social work research capacities.
    I just wanted to make a few additional comments, very 
briefly, Mr. Chairman, on the importance of that research being 
directed toward child abuse and neglect. We would hope that 
your subcommittee would support that research. We are grateful 
for your attention to this issue. We would hope that your 
report language for fiscal year 1998 supports a continuation of 
the working group that has been addressing this issue and the 
implementation of their recommendations for further action. 
Thank you very much, Mr. Chairman.
    [The prepared statement of Mary Ann Quaranta follows:]

[Pages 667 - 677--The official Committee record contains additional material here.]


    Mr. Miller. Thank you very much. Balancing the budget is 
not easy work and fiscal responsibility is not easy work 
because you have such tough choices. By the way, my daughter is 
getting an MSW next month, so I look forward to no longer 
having to support kids in school right now.
    Ms. Quaranta. Congratulations.
    Mr. Miller. Thank you very much for appearing today.

                              ----------                              

                                         Wednesday, April 16, 1997.

                                WITNESS

DONALD E. SEATTER, NATIONAL COUNCIL OF SOCIAL SECURITY MANAGEMENT 
    ASSOCIATIONS, INC.

    Mr. Miller. Now, Donald Seatter, President of the National 
Council of Social Security Management Associations. Mr. 
Seatter, welcome.
    Mr. Seatter. Thank you. First, let me thank this committee, 
you, Mr. Miller, and Chairman Porter for both the opportunity 
to testify and for your continuing support of the Social 
Security Administration's administrative operations.
    I represent over 3,000 managers and supervisors working in 
the field offices and teleservice centers throughout the 
country. We are responsible for delivering the services 
necessary to keep the millions of people we deal with satisfied 
that our administration of their money is sound. Our experience 
is that the buck stops with us as far as the average citizen is 
concerned. We believe in what we do, and we believe that Social 
Security's 60 year reputation for sound administration is based 
on the fact that we put a human face on Government.
    As I combed over SSA's budget estimate justification, I was 
somewhat taken aback at how little is stated about the 
accomplishments of Social Security offices throughout the 
country, rather that we talk about focus groups and strategic 
planning, redesigning processes, and so forth, all necessary 
perhaps, but rather sterile at best in shedding light on what 
the agency needs.
    Rather than read from my prepared statement, I want tofocus 
on three or four areas where I feel this committee can assure that in 
the context of the fiscal year 1998 budget funds are appropriated to 
either enhance agency performance or correct existing problems.
    Let me touch briefly on the telephone service. Last year 
the former Commissioner of Social Security committed to a 
standard of access to our 800 number that may well be attained 
at the expense of other vital services. The 800 number serves a 
needed public service, but since last year's commitment to this 
committee, those of us in SSA have seen single-minded chasing 
of a service level number that is probably in truth unreachable 
and not necessarily in the context of other customer needs all 
that necessary.
    Meanwhile, phone service in local Social Security offices 
is in critical shape. Outmoded equipment, scarce personnel 
makes most managers ashamed of the service that they are 
offering. We desperately need voice mail and other automated 
enhancements to at least alleviate the problem. Congress 
mandated that Social Security's local offices provide phone 
service in Public Law 101-508. Local service and 800 number 
service need to be balanced and complimentary. That is not now 
the case.
    The General Accounting Office recently added the SSI 
program to the high-risk list of programs vulnerable to fraud. 
This comes at a time when the agency is in what I can only 
label mindless pursuit of a supervisory ratio and is 
eliminating operations supervisors, the position in field 
offices most likely to detect either program or employee fraud. 
A recent case that I became aware of involving $100,000 in 
employee fraud can be correlated directly with the lack of a 
supervisor. That supervisor had been ``delayered.'' Management 
fads come and go but to leave a Social Security office with no 
supervisor on duty for many hours of the week in name of a 
ratio does not reflect common sense.
    Employee safety is becoming more costly in SSA. Much has 
been done to enhance physical security, but it seems likely 
that the office guards will be needed in many locations well 
into fiscal year 1998. Many guards were added in order to 
protect employees and customers alike during the welfare reform 
work laws. It would appear at this point in time that welfare 
reform work laws will not be completed on their original 
schedule. Policy delays almost assure a significant part of 
welfare reform will be handled in fiscal year 1998.
    Regarding automation, our IWS LAN installation seems to be 
falling a little bit behind schedule. Hopefully, this is only a 
short-term problem since so much in future productivity 
increases is dependent on an on time start for this automation 
initiative. Slippage in IWS LAN will delay any productivity 
savings promised by the agency in its cost justification. Those 
of us who lived through earlier agency downsizings are somewhat 
skeptical of FTE savings based on automation that is yet to 
happen.
    My written statement contains several additional areas of 
concern that I hope the committee will find of interest. This 
committee has played an active part in bringing SSA to identify 
specific performance objectives. That effort, if continued, 
should include some concrete suggestions to move SSA toward a 
better assessment of all services provided in the field and an 
improved balance of service which more efficiently coordinates 
the operations of all SSA components. Today, even as we give 
necessary priority to welfare reform and continuing disability 
reviews, we allow equally necessary work to slip because field 
staffing capacity is strained to the breaking point and trade-
offs among workloads is still the order of the day.
    We who work for SSA in communities throughout the country 
are doing our very best to maintain first-class service to the 
American people.
    I appreciate this opportunity, Congressman Miller, and will 
be happy to respond to any questions.
    [The prepared statement of Donald Seatter follows:]

[Pages 680 - 686--The official Committee record contains additional material here.]


    Mr. Miller. Thank you very much for your testimony. I 
appreciate your being here today.

                              ----------                              

                                         Wednesday, April 16, 1997.

                                WITNESS

BRENDA L. CRABBS, ARTHRITIS FOUNDATION

    Mr. Miller. We will proceed with Brenda Crabbs, 
representing the Arthritis Foundation. Good afternoon.
    Ms. Crabbs. Good afternoon. Mr. Chairman, my name is Brenda 
Crabbs and I am Chair of the Public Policy and Advocacy 
Committee for the Maryland Chapter of the Arthritis Foundation, 
and a member of the national Public Policy and Advocacy 
Committee. I am really honored to be here today on behalf of 
the Arthritis Foundation.
    The Arthritis Foundation is a national voluntary health 
organization that works on behalf of the nearly 40,000,000 
Americans who are affected with some form of arthritis or 
related disease. Our primary mission is to support research, to 
find a cure or prevention for arthritis, and to advance 
professional and community education about the disease, and to 
provide services to those who have the disease.
    Last year, the national organization spent in excess of $14 
million to fund research projects. Our Maryland chapter spent 
in excess of $1 million to fund research grants. So we are 
doing something to try and help ourselves.
    Arthritis is the leading cause of disability in the United 
States, severely disabling over 7,000,000 Americans. It 
disproportionately afflicts women with 60 percent more cases in 
women than men, and it affects minority women in more cases 
than caucasian women. Over the next 25 years as the population 
ages, the prevalence of arthritis is expected to increase by 
about 12,000,000, for a total of 60,000,000 by the year 2020.
    The annual cost of arthritis and muscular skeletal diseases 
currently is about $126 billion in medical care and lost wages. 
That is a significant number and it is likely to grow as the 
population ages and more Americans are afflicted with 
arthritis. Certainly the economic consequences of the disease 
make prevention and finding a cure particularly important. But 
even more debilitating is the physical toll arthritis takes on 
its victims.
    Mr. Miller. There is a vote going on now, but we wait to 
see what it is. Please continue.
    Ms. Crabbs. A friend of mine recently said to me that 
arthritis is not a sexy disease, it is not a killer disease. 
But I can tell you, as somebody who has arthritis, I have had 
rheumatoid arthritis for over 34 years, the debilitating 
mobility and significant pain that one has to go through is 
certainly something to deal with. It takes me longer to do 
absolutely everything, from getting out of bed in the morning 
to showering, to doing my hair, to putting on makeup, to 
getting dressed and trying to go on with life. I consider 
myself fortunate because I have access to very good medical 
care and have had good insurance, and I have the wherewithal to 
pay for the increased services that I need whether it is 
somebody to clean my house, carry my groceries, or whatever to 
help keep me independent.
    Our written testimony goes through a couple of the 
different kinds of arthritis and I will not dwell on that. But 
according to a study by the Centers for Disease Control, 
6,000,000 people believe that they have arthritis but they have 
never consulted a physician even though 75 percent of them saw 
a physician for other problems. Part of the reason for the 
delay in seeking treatment may be attributable to 
misconceptions about the availability of treatment. In an 
interview of patients with muscular skeletal conditions, 40 
percent thought that nothing could be done for them. Clearly, 
we must do a better job of getting the message out and of 
reaching everybody who needs our assistance.
    The Arthritis Foundation requests $2 million be provided 
through the CDC in fiscal year 1998 so that the full dimensions 
of the problem of arthritis can be more accurately understood. 
There can be all kinds of studies done in cooperation with 
hospitals, doctors, and community organizations to more 
effectively evaluate what's going on and disseminate 
interventions.
    NIAMS is also an important factor here. With this 
committee's tremendous support and leadership through the 
congressional support of NIAMS in the past, we have 
accomplished much in the past ten years toward relieving the 
burden of arthritis. Again, our written testimony lists some of 
the advances that have been made. I just want to speak to one 
of them, and that is the better understanding that we have 
gotten with regard to implantware and making joint replacement 
surgery more feasible for younger people.
    I have two knee replacements, one of which was done eight 
years ago. I, just this February, had to have a revision on 
that knee replacement. I am told that the plastic cartilage 
which is what wore out this last time is now going to last me a 
lot longer because of the new plastic that has been developed 
for this kind of implant. So I think that the technical 
research is extremely important and it certainly has affected 
me.
    To summarize, these advances in arthritis research would 
not have occurred without the strong commitment to biomedical 
and behavioral research that Congress has provided. However, 
many exciting and promising research opportunities remain 
unfunded including further research on arthritis in children 
and genetic therapy by immunization for rheumatoid arthritis, 
to name only two.
    Researchers hope to improve their understanding of 
arthritic diseases through the development of new plastics and 
adhesives that will lead to even greater surgical successes and 
improved prosthesis as well as thorough identification of 
triggers for those at high risk for arthritis. This also 
affects me personally because I have a four year old grandson 
who has recently developed a Baker cyst, one of the forms of 
arthritis, behind his knee. So anything that can happen to help 
him is certainly important.
    With regard to NIAMS, we are asking for a 9 percent 
increase, to $280 million. You all have been so supportive in 
the past and we need and hope that support will continue. Thank 
you so much for giving me this opportunity to appear today.
    [The prepared statement of Brenda Crabbs follows:]

[Pages 689 - 694--The official Committee record contains additional material here.]


    Mr. Miller. Thank you very much for testifying today.
    Ms. Crabbs. Thank you.
                              ----------                              

                                         Wednesday, April 16, 1997.

                                WITNESS

JEFFREY H. COBEN, M.D., INJURY PREVENTION RESEARCH CENTER

    Mr. Miller. There is a series of votes taking place on the 
floor of the House, so we are going to have to break in about 
seven or eight minutes. Doctor Coben, if you can stay with five 
minutes, fine, we can do that now and then we will take a 
recess while we go vote. Doctor Coben is here from the 
University of Pittsburgh, Center for Injury Research and 
Control. Welcome.
    Dr. Coben. Thank you, Mr. Chairman and members of the 
subcommittee. This will be a brief statement. I understand that 
Mr. Porter is injured. I am here to speak with you specifically 
about the importance of injuries as a health problem and the 
need to allocate additional resources to the National Center 
for Injury Prevention and Control at the CDC. My name is 
Jeffrey Coben. I am a practicing emergency medicine physician. 
I am also the founder and Director of the Center for Injury 
Research and Control at the University of Pittsburgh. We are 
one of the ten Centers of Excellence supported in part by the 
National Center at the CDC.
    Over the last 13 years, I have worked in a number of 
emergency departments across this country. I have worked in 
Illinois, in Florida, and in Pennsylvania, in some of our 
largest cities and in some of our most rural communities. As a 
practicing emergency physician, I can tell you that I believe 
that injuries are the most important health problem affecting 
many of our communities.
    In 1996, there were over 90,000,000 visits to hospital 
emergency departments in this country. Fully one-third of those 
were due to injuries. Each year over 150,000 Americans die from 
injuries. This is more than all Americans who died in the 
entire Vietnam War. Since it is young people who are most 
frequently injured, the costs to our society are enormous.
    But rather than dwelling on statistics, I would like to 
tell you that I have personally had to deal with these injured 
patients. I have smelled the burnt flesh of people who have 
died from preventable injuries due to house fires. I have seen 
the look on the faces of young men realizing for the first time 
that they will be paralyzed for the rest of their lives due to 
injuries that were unnecessary. I have had to sit down with 
parents and look at them in the face and tell them that their 
beloved child has been taken from them despite all of our 
efforts due to injuries that were avoidable and preventable. 
Beautiful children killed in swimming pools, in automobiles, 
and through violence, killed by injuries that were unnecessary, 
preventable, and avoidable.
    This plague on our society can be defeated. Like other 
plagues that we have dealt with, whether it is malaria or 
polio, breast cancer or heart disease, one of the keys to 
defeating this is to dedicate resources against. This is why 
your support of the National Center for Injury Prevention is so 
very important.
    The National Center provides a focal point and leadership 
that is needed to deal with the problem of injury. In 1990, 
when I decided to devote my career to injury prevention, I 
turned to the National Center for guidance. I learned through 
their publications, through their research programs, and their 
meetings how to scientifically approach the problem of injury. 
No other Federal agency provides this type of leadership or 
operates from this paradigm.
    The National Center has repeatedly demonstrated over the 
last eight years how bringing together scientists, engineers, 
policy experts, public health experts, and medical experts can 
significantly reduce injuries from house fires, from car 
crashes, falls, bicycles, and motorcycle crashes. More people 
are needed to work on this problem. We have the expertise, we 
have the knowledge, we need more people working on this.
    Much more work needs to be done. Research needs to be 
conducted on how to implement proven safety measures in our 
communities. We need to learn more about what works and what 
doesn't work in urban communities and in rural communities. And 
we need to train the next generation of scientists on how to 
successfully approach the problem of injury. This requires 
resources.
    The National Center for Injury Prevention receives 
approximately one-fiftieth the level of funding as the National 
Cancer Institute, and one-thirtieth the level of funding as the 
National Heart, Lung, and Blood Institute. Based upon all the 
statistics, and based upon the patients that I see in the 
emergency departments, I think that this disparity does not 
make sense.
    The patients in our emergency departments cry out for your 
help to relieve the unnecessary suffering from injury in 
America. If we have the will, we have the way to accomplish 
this task, and that is by providing additional resources to the 
National Center. The amount of financial resources that are 
allocated to the National Center will translate directly to the 
level of human resources that are dedicated against this 
problem, a problem that robs us of our single most important 
resource--our children. Thank you, Mr. Miller.
    [The prepared statement of Jeffrey Coben, M.D., follows:]

[Pages 697 - 703--The official Committee record contains additional material here.]


    Mr. Miller. Doctor Coben, thank you. On Monday, this 
committee was in Atlanta and spent the day at the CDC. Doctor 
Mark Rosenberg was our lunch speaker and he was with us most of 
the day, so we are aware. And he has testified before the 
committee. You do great work. It is hard being an emergency 
room doctor, so I congratulate you on that.
    Because of the votes, and we have two votes, we will take 
about a 15 minute recess.
    [Recess.]
                              ----------                              

                                         Wednesday, April 16, 1997.

                                WITNESS

DAVID ROOS, THE JUVENILE DIABETES FOUNDATION
LEAH MULLIN

    Mr. Miller. The subcommittee will return to order.
    Our next witness is David Roos. One of our subcommittee 
members will be introducing you personally. Welcome.
    I apologize for the necessity for us to interrupt the 
hearing to go vote, but we do not really plan ahead for these. 
We had two quick votes and now we are going to be able to 
continue uninterrupted for the remainder.
    Mr. Dickey.
    Mr. Dickey. Thank you, Mr. Chairman.
    I would like to introduce to this committee my friend, Duke 
Roos. Duke and I have known each other maybe six years, but the 
friendship has been pretty strong during that period of time. 
He started some time ago talking to me about juvenile diabetes 
and the fact that his daughter had the disease. It did not mean 
a whole lot to me, even though I listened and I knew it was a 
problem and I knew it related to this committee, until his 
daughter died. I think he is going to tell the story.
    Here is a successful businessman, a loving father, a person 
who cares about people. I guess if anything else, Duke Roos 
care about people. I am glad to have him as my friend. It is an 
honor to present him to this committee, and I wish him well in 
his testimony.
    Mr. Roos. Thank you, Jay. You have been a good friend to 
me, too. Congressman Miller and subcommittee members, my name 
is David Roos, and I am from Atlanta, Georgia. Next to me is 
Leah Mullin, a member of the JDF national board and a parent of 
a child with diabetes. I welcome the opportunity to be with you 
here today representing the Juvenile Diabetes Foundation and 
the 16,000,000 people in this country with diabetes. I do not 
have a lot of statistics for you to digest, since I am 
appearing before this committee not as a professional, but to 
talk to you from the heart.
    Twenty years ago, my wife and I were told that our daughter 
Debbie had juvenile diabetes. While we knew this was bad news, 
we had no idea how bad it really was. Sure, there would be 
times when she would not feel well, and we knew that she would 
have to give herself several shots a day, but, what the hell, 
it could be worse, we thought. She would, with our help, live 
to a ripe old age.
    In short, my wife and I believed in our capacity to protect 
our little girl from the daily and long-term threats of 
diabetes--insulin shock, commas induced by otherwise normal 
illnesses such as the flu, and the usual crushing litany of 
kidney failure, neuropathy, heart disease, and blindness. 
Debbie was only 12 at the time of her diagnosis.
    We were wrong 20 years ago. Debbie's diabetes was, in fact, 
about the worst news we could have received. My wife and I were 
ultimately unable to prevent the insidious, destructive process 
that diabetes wreaked in the child thatwe loved and admired. 
Today, she is dead. Debbie passed away on January 5, 1997 at the age of 
32, at the prime of life, because of heart problems caused by diabetes.
    Debbie's mother and I are grateful, however, that we had 
her with us for 32 years during which time she was able to lead 
an almost normal life. She went to overnight summer camp for 
nine years, attended the usual schools, culminating in her 
graduation from the University of Texas as a Dean's List 
student. After graduation, she was able to function at a high 
level in the workplace, working in corporate sales for such 
large corporations as Coca Cola, Pac Tel, and AT&T. Her mother 
and I were very proud of her.
    Approximately 18 months ago things began to change. She 
started losing her sight and eventually became legally blind 
because of diabetes. Because she could no longer function in 
the corporate world, she came to work for me. What I saw was a 
tragedy unfolding. In addition to being legally blind, she had 
developed gastroparesis, a paralysis of the stomach caused by 
diabetic neuropathy which, among other things caused her to be 
nauseated for the better part of each day. In fact, she was 
sick to her stomach virtually every day for over five years. We 
were finally able to help her stomach condition by purchasing 
the drug Motillem in the Bahamas, since it is not available in 
the U.S. that is a story for another day.
    What I have described is just the tip of the iceberg. I 
realize there is not enough time today for me to chronicle all 
the challenges associated with her diabetes. But, if I do 
nothing else, I hope that I will have made you aware that there 
presently is no cure for diabetes and that current treatments 
are inadequate.
    My daughter Debbie died, not because she did not take care 
of herself but, because of the luck of the draw, she was 
unfortunate enough to develop diabetes. Debbie died because 
insulin is not a cure--I repeat, it is not a cure. The 1,300 
people at her funeral knew that, and I want to make sure that 
you do, too. Records show that each year diabetes and its 
complications contribute to the death of 170,000 Americans, 
more than die of AIDS and breast cancer combined each year, and 
that is probably an understatement due to reporting 
inaccuracies relating to the primary cause of death. People 
with diabetes are two to four times more likely to die from 
heart disease, and diabetes accounts for approximately 40 
percent of all kidney failures.
    One thing I know for sure is that the lives of 16,000,000 
people with diabetes and the 100,000,000 or so who love them 
change for the worse once diabetes comes into their lives. It 
is we who implore you, you who are in positions to really make 
a difference, to take decisive action to eradicate diabetes 
once and for all.
    Do not be deluded to thinking that insulin is a cure. Do 
not assume that people, and particularly youngsters, with 
diabetes can lead the robotic, regulated lives that tight 
control of glucose levels demands. Do not for a moment think 
that we have solved the problems of diabetes-related 
complications when genetic researchers are hinting that yet 
unidentified genes may well determine the fate of a person with 
diabetes.
    You should be thanked, on behalf of the families who know 
diabetes on a personal level, for all the research 
breakthroughs made possible to date by your support of diabetic 
research. On a personal level, I am grateful for the medical 
advances that allowed my daughter to live 20 years since her 
initial diagnosis. She had the opportunity to be married to a 
wonderful man for four years which, despite being fraught with 
medical problems, were her happiest. We were provided with 
memories of Debbie living life to its fullest, memories which 
will continue to be a source of comfort to us. We as a Nation 
cannot rest on these accomplishments. For all of the Debbies 
out there, we need to make finding a cure for diabetes a 
national priority.
    It looks to me as if diabetes funding at NIH has languished 
a bit. I wonder why, given the increasing numbers of those 
afflicted and the $138 billion of direct and indirect costs of 
diabetes borne by this country annually. If, as the Speaker of 
the House suggests, 25 percent of Medicare costs go to the care 
of diabetes and its complications, our strategy should be 
clear.
    As a businessman, I know that an increased investment in 
diabetes research is a good deal. As a grieving parent and a 
concerned citizen, I know that increased funding of diabetes 
research is for the good of all mankind. It is too late to help 
my daughter, except to honor her memory by helping those who 
still suffer from diabetes. Some people may wonder how I can 
appear before you so soon after my daughter's death. As 
difficult as it is, what helps keep me going is the search for 
a cure so that others will not have the experience that we had. 
My family, as well as the Juvenile Diabetes Foundation, is 
committed to creating a world where no one will fear diabetes 
and its complications.
    I thank you, Congressman Miller, and other members of the 
committee, and especially my good friend Jay Dickey for the 
opportunity to be heard today. You have the opportunity to 
positively shape the future of tens of millions of your 
constituents and their families, and I hope you rise to the 
challenge. More than anything, I want to come back here some 
day to share what might become one of this Nation's finest 
moments--the day when we will finally announce as partners a 
cure for diabetes. Thank you.
    [The prepared statement of David Roos follows:]

[Pages 707 - 713--The official Committee record contains additional material here.]


    Mr. Miller. Thank you, Mr. Roos. We appreciate your 
testimony. You surely can personalize the tough decisions we 
have to make in biomedical research. But the one area that 
rates very high in this committee, with both Democrats and 
Republicans, is biomedical research, whether it is cancer or 
leukemia or juvenile diabetes.
    On Monday, this committee, including Mr. Dickey, were in 
Atlanta at the CDC. We were talking specifically about diabetes 
and the progress that has been made and the need to continue 
that support. I appreciate your personal commitment to that and 
for bringing the personalization of how biomedical research 
really affects us.
    Mr. Dickey?
    Mr. Dickey. Thank you, Mr. Chairman. Good job.
    Mr. Roos. Thank you.
    Mr. Miller. Thank you.
                              ----------                              

                                         Wednesday, April 16, 1997.

                                WITNESS

GARY C. SCHOENWOLF, THE AMERICAN ASSOCIATION OF ANATOMISTS

    Mr. Miller. Next we will have Doctor Gary Schoenwolf, 
Professor in the Department of Neurobiology and Anatomy at the 
University of Utah School of Medicine. Welcome.
    Mr. Schoenwolf. Thank you, Mr. Chairman and distinguished 
members of the subcommittee. I am Gary Schoenwolf, a Professor 
at the University of Utah. I greatly appreciate the opportunity 
to testify before your subcommittee on the fiscal year 1998 
appropriations for the National Institutes of Health. I do so 
as President of the American Association of Anatomists. The 
members of our society focus their scientific efforts on 
attaining a better understanding of the structure and function 
of the human body.
    I would like to sincerely thank this committee and Chairman 
Porter for the continuing support and direction that you have 
shown on behalf of basic biomedical research over the course of 
the last several years. All of us in the biomedical research 
community recognize that you face difficult challenges and we 
are truly grateful for your generous support of and commitment 
to biomedical research.
    Before listing our recommendations, let me point out that 
our goal is to improve the health of all Americans. As a 
scientist and particularly as an embryologist, I believe as the 
Psalmist has written that we are ``fearfully and wonderfully 
made.'' Disease destroys that which was once wonderful, and our 
goal as biomedical researchers is nothing short of destroying 
that disease.
    We have six recommendations which are listed in my written 
testimony. Here, because of time constraints, I will highlight 
only two: First, an appropriations level for the National 
Institutes of Health of $13.89 billion. That is a 9 percent 
increase over fiscal year 1997; and secondly, that the efforts 
of the NIH to increase the number of minority biomedical 
scientists be strengthened.
    Mr. Chairman, we are on the threshold of a highly 
productive era in biomedical research. To borrow a phrase from 
W.C. Fields, ``We have a veritable plethora'' of opportunities 
now before us. My own area of research concerns early 
development of the embryo and the prevention of birth defects. 
We study the early development of the nervous system. 
Unfortunately, in 1 in about every 1,600 babies, that is in 
more than 2,500 babies per year in the U.S. alone, this process 
goes awry resulting in serious and life-threatening birth 
defects.
    Our NIH-supported work has overturned the dogma in the 
field and has shown that early development of the nervous 
system involves a type of cellular ballet in which highly 
choreographed cellular movements and interactions are essential 
for normal development. If time would permit, literally 
hundreds of other recent advances obtained from NIH-supported 
research could be listed, and a few of those are highlight in 
my written testimony.
    Mr. Chairman, I am here today mainly because of my deep 
concern that without the dedicated efforts of Congressman and 
Congresswomen such as those on this committee that many of 
these opportunities will be lost. Competition for research 
grants has reached discouraging levels. In fiscal year 1996, 
only one in every four credible grant applications was funded 
by the NIH. Having served recently on an NIH Study Section 
reviewing grants, I can tell you that it is heartbreaking to 
reject three-fourths or more of the grants that you review when 
many of the rejected applications would have provided important 
advances. This poor success rate for funding frustrates and 
disillusions existing and potential biomedical scientists. More 
importantly, it makes all Americans the ultimate losers. A care 
put off means that Americans will suffer needlessly from 
diseases that could have been prevented.
    We advocate that the success rate for new investigator-
initiated projects be boosted to 30 percent. To support this 
increased success rate to fund excellent applications, we 
strongly recommend a 9 percent increase in funding for the 
National Institutes of Health.
    Mr. Chairman, my second concern is the status of women and 
minorities in science. We feel strongly that efforts must be 
made to improve K-12 education to increase the pool of students 
choosing science for a major in college and for their future 
careers. Furthermore, we strongly endorse NIH's Minority 
Opportunity for Research programs.
    Let me tell you one story. Last week, I was in New Orleans. 
In the morning I read an article in the ``USA Today'' about the 
large number of teens who will spend most of their lives in 
prison. At noon, I went to a luncheon for minority students 
support in part by the National Institutes of Health. As I 
talked with many of the almost 300 African-American students 
who attended, my depression of the morning quickly changed to 
optimism.
    Our young people want a chance to make a positive 
contribution to society. Programs that support under-
represented minorities do make a difference. I urge you to 
provide funding to expand such programs.
    In closing, let me say that as a working scientist, but, 
more importantly, as an American citizen, I urge you to 
continue the life-saving investments that you have made on 
behalf of the American people by supporting the National 
Institutes of Health. Thank you very much.
    [The prepared statement of Gary Schoenwolf follows:]

[Pages 717 - 725--The official Committee record contains additional material here.]


    Mr. Miller. Thank you very much, Doctor. We have to make 
these tough choices up here of scarce resources. Somebody such 
as yourself certainly understands the importance of NIH. We 
just need to get more people out there understanding their 
role. I know it is very frustrating when you can only accept 
one out of every four. The more we can get those outside the 
biomedical community understanding and recognizing that NIH-
supported research is critical to this country, the better off 
we are going to be. Thank you for your testimony.
    Mr. Schoenwolf. Thank you.

                              ----------                                


                                         Wednesday, April 16, 1997.

                                WITNESS

PATRICK B. HARR, M.D., THE AMERICAN ACADEMY OF FAMILY PHYSICIANS

    Mr. Miller. Our next witness is Doctor Patrick Harr, 
representing the Academy of Family Physicians. Doctor Harr has 
been to a doctor recently it seems.
    Dr. Harr. I hope Doctor Cohen has left because this was 
probably avoidable and preventable. [Laughter.]
    Dr. Harr. Good afternoon. I am Patrick B. Harr, M.D., from 
Maryville, Missouri. It is my honor to serve as President of 
the 85,000 member American Academy of Family Physicians. I am 
delighted to spend some time with you this afternoon to talk 
about an issue that is vital to the millions of people who need 
primary care doctors; and that is, funding of Title VII, 
Section 747, for family practice.
    Mr. Chairman, the Academy appreciates the increased funding 
provided by this subcommittee for fiscal year 1997. We would 
also like to thank Representative Bonilla for his leadership on 
funding health professions programs. Nevertheless, we have a 
tough battle this year and funding for Section 747, Family 
Practice Programs, is in crisis.
    At a time when the marketplace is sending out signals that 
the U.S. needs more family physicians, the Administration 
released a budget that cuts funding for primary care training 
by 90 percent, from $82 million to $8 million. At a time when 
the marketplace in the form of managed care organizations 
reports that there is shortage of family doctors, we are 
fighting for only modest funding increases necessary to produce 
those physicians who are needed. At a time when the marketplace 
tells us there are not enough doctors for well over half of all 
American counties, we are told that family practice programs do 
not need a lot of Federal dollars.
    Let me share some information with you. We do not have a 
so-called pure physician market in the United States. Medicare 
funding of graduate medical education at $6 billion a year 
skews training of America's physicians to the subspecialties. 
This $6 billion goes almost exclusively to hospitals which 
train subspecialties rather than to offices and clinics and 
ambulatory sites where we train the family doctors. While $6 
billion is a lot of money for medical training, the money is 
going to produce the wrong kind of physicians.
    We have a shortage of primary care doctors in the United 
States. The experts agree we should have a 50-50 mix of 
subspecialists and primary care physicians. But the split now 
is 70-30. You may have heard that the number of medical 
students selecting primary care training is increasing. That is 
true, but it is too early to declare victory. Only about one-
third of our Nation's medical students pursue a career in 
primary care. That figure should be well over half if we are to 
move toward a 50-50 split.
    In fact, the shortage of primary care physicians is so 
severe that according to one source if all the medical school 
graduates from now to the year 2025 chose primary care, only 
then would we achieve a 50-50 mix. Is now the time to be 
cutting Title VII funds? We think not.
    The $49 million in Title VII funds currently going to 
family practice programs really make a difference in reaching 
this goal. Not only is it a small counter-balance to the $6 
billion in Medicare GME, but this money actually helps produce 
more family doctors. For example, a GAO report shows that 
medical schools with Title VII-funded family medicine 
departments produce more graduates who pursue primary care, and 
schools with third year clerkships produce graduates who are 
more likely to choose family practice as a career.
    The American Academy of Family Physicians is fully aware of 
the Nation's budget problems. We are aware of current problems 
around mandatory versus discretionary spending. We support 
responsible Federal spending. We believe responsible Federal 
spending should include Title VII. Dollars for family practice 
programs yield measurable results--more family doctors to take 
care of our Nation's babies, children, men and women, and 
senior citizens throughout rural as well as urban America. To 
cut funding for family practice programs now when the 
marketplace is crying for more family physicians and the 
current direction of federally-funded graduate medical 
education is to produce more subspecialists rather than family 
physicians just does make for good health policy.
    In addition, there is insufficient funding for primary care 
research in this country, research that responds to the needs 
of the general population. We strongly recommend an increased 
funding of the Center for Primary Care Research within the 
Agency for Health Care Policy and Research to help meet this 
most critical need.
    We ask you to increase funding for Section 747. More money 
for family practice programs means more family doctors. More 
money for primary care research means finding the best mix of 
preventive and therapeutic care to provide the best outcomes.
    I deeply appreciate the opportunity to testify before you, 
and would be happy to answer any questions. Thank you.
    [The prepared statement Patrick Harr, M.D., follows:]

[Pages 728 - 735--The official Committee record contains additional material here.]


    Mr. Miller. Thank you, Doctor Harr. As president of a 
national association, you probably get lots of free time to 
travel to Washington or wherever to testify. Thank you for 
taking the time to come here today.
    Dr. Harr. Thank you.
                              ----------                              

                                         Wednesday, April 16, 1997.

                                WITNESS

ROBERT J. RUBEN, M.D., PROFESSOR AND CHAIRMAN, DEPARTMENT OF 
    OTOLARYNGOLOGY, PROFESSOR OF PEDIATRICS, ALBERT EINSTEIN COLLEGE OF 
    MEDICINE, YESHIVA UNIVERSITY, AND MONTEFIORE MEDICAL CENTER, 
    REPRESENTING THE AMERICA ACADEMY OF OTOLARYNGOLOGY-HEAD AND NECK 
    SURGERY, INC.

    Mr. Miller. Next, Doctor Robert Ruben, Professor of 
Pediatrics and Chairman of the Department--I would not even 
mention the department. I am sorry--at the Albert Einstein 
College of Medicine, Yeshiva University.
    Dr. Ruben. Thank you, Mr. Miller and members of the 
subcommittee. I am Robert J. Ruben, Professor and Chairman of 
the Department of Otolaryngology--ear, nose, and throat--at the 
Albert Einstein College of Medicine and the Montefiore Medical 
Center, Bronx, New York. Today, I am representing the American 
Academy of Otolaryngology-Head and Neck Surgery, the world's 
largest organization of otolaryngology and head and neck 
surgeons. There are more than 10,000 members including 97 
percent of all board certified otolaryngologists.
    Mr. Miller and members of the committee, first of all, I 
want to thank you and all the colleagues at the subcommittee 
for the hard work you have done in funding of the National 
Institutes of Health for the fiscal years 1996 and 1997. This 
was extraordinary.
    I want to speak today about three areas of particular 
interest to our Academy. The first is our support of the 
National Institute of Deafness and Other Communication 
Disorders; the second, the National Institute of Environmental 
Health Sciences; and the third, our support of the National 
Institute of Dental Research.
    First, the National Institute of Deafness and Other 
Communication Disorders. The programs areas of this Institute 
are concerned with the most critically important aspect of 
contemporary, economic, and social success--communication--and 
the underlying biology which impairs or enhances a person's 
communication abilities. During the recent past, there have 
been many advances in our understanding of these diseases 
processes underlying communication disorders and how these 
conditions can be prevented or cured.
    One of the most exciting has been the recent discoveries in 
the area of hearing. Heretofore, the inner ear, the cochlea, 
was considered to be fundamentally untreatable and was cared 
for with some form of hearing aid or electronic implant. Now, 
scientists throughout the United States and the world are 
working on molecular biological means to prevent inner ear 
deafness, repair a damaged inner ear, and to replenish the 
cells which have been destroyed. These studies were not even 
considered a few years ago. Now there may soon be clinical 
application of the fruits of the fundamental research which you 
through the NIDCD have supported.
    These ongoing studies will utilize all four areas which the 
NIH and the NIDCD are strengthening--molecular biology, the 
determination of molecular growth factors needed for 
protection, repair, and replenishment; molecular genetics, the 
counterization of the molecular genetic processes of deafness 
and the mechanisms needed for protection, repair, and 
replenishment; imaging, identifying/defining the disease states 
of the inner ear and evaluating the effects of restoration on 
brain processes, especially speech and language; integrative 
neuroscience, optimizing the most efficient and effective means 
of preserving central neural structures and determining the 
dimensions of integration of sensory information so as to 
optimize receptive and expressive oral language.
    The National Institute of Deafness and Other Communication 
Disorders continues to be highly successful. The grants which 
are funded are some of the highest priority scores from the 
various Study Sections. Unfortunately, there is such an over-
abundance of superior research proposals that excellent to 
outstanding vital research is not funded. An incremental 
increase in resources is essential for NIDCD, the Institute 
which is concerned with the enhancement of communication 
abilities of Americans that allows us to be more competitive in 
the world's markets and enhances our domestic tranquility, the 
basis of present day American society.
    Secondly, the National Institute of Environmental Health, 
which deals with relationships between environment and human 
health. As I indicated to the committee last year, this 
Institute funded a conference that our Academy of 
Otolaryngology cosponsored with the National Association of 
Physicians for the Environment and Air Pollution on air 
pollution impacts on body organs and systems. This was a very 
successful conference which led to the publication of a slide 
series based on papers published within our Academy Journal.
    Thirdly, I would like to emphasize the work of the National 
Institute of Dental Research. The American Academy of 
Otolaryngology-Head and Neck Surgery wishes to bring to your 
attention the excellent programs the NIDR for establishing four 
new oral cancer centers. These centers were laid in our 
understanding of these disfiguring and deadly cancers. Oral 
cancer, in the main, is associated with tobacco and alcohol 
abuse. How these cancers come about especially in association 
with viral infections that may block tumor suppression genes 
and enable proliferative genes is a basic area which is being 
studied.
    Mr. Chairman and the committee, we, the Academy, 
otolaryngologists fully support the request of the Ad Hoc Group 
for Medical Research Funding, of which we are members, for a 9 
percent increase overall for National Institutes of Health. 
Because of the special importance and extraordinary demands of 
outstanding science upon the National Institute of Deafness and 
Communication Disorders, we request a 12 percent increase for 
the NIDCD.
    Mr. Chairman, thank you for the opportunity to testify. I 
would be pleased to answer any questions which you may have. I 
might add, I have spent much time in your district; both 
enjoyably and intellectually very, very useful, but that is 
another story.
    [The prepared statement of Robert Ruben follows:]

[Pages 738 - 749--The official Committee record contains additional material here.]


    Mr. Miller. Well, thank you. Thank you for coming today and 
testifying. We have these tough choices and this must be very 
frustrating that, as the previous witness said, only one out of 
four research grants are funded. When you have limited 
resources, having to choose is not always easy. So we do the 
best we can.
    Dr. Ruben. NIDCD in the last round was a little bit worse. 
It was 12 percentile.
    Mr. Miller. Is that right?
    Dr. Ruben. Yes, sir.
    Mr. Miller. We will do the best we can.
    Dr. Ruben. Thank you, sir.
    Mr. Miller. Thank you for coming today.

                              ----------                              

                                         Wednesday, April 16, 1997.

                                WITNESS

SUSAN SCRIMSHAW, THE ASSOCIATION OF SCHOOLS OF PUBLIC HEALTH
    Mr. Miller. Next we have Doctor Susan Scrimshaw, Dean of 
the School of Public Health at the University of Illinois at 
Chicago. Doctor Scrimshaw is here representing the Association 
of Schools of Public Health.
    Ms. Scrimshaw. Mr. Chairman, I am Susan Scrimshaw, Dean of 
the School of Public Health, University of Illinois at Chicago, 
and Chair of the Legislative Committee of the Association of 
Schools of Public Health. A statement showing the amount and 
source of Federal grants that the Association and I have 
received in the current fiscal year along with my biographical 
sketch are attached to my written testimony. I am grateful for 
the opportunity to testify here today.
    I should mention that I also have spent some enjoyable time 
in the State of Florida. Last week was Public Health Week and I 
was the keynote speaker at the University of South Florida 
School of Public in Tampa. I enjoyed the school very much and 
obviously enjoyed the stay there.
    I have submitted a written statement and, with your 
permission, I would like to just make a few comments on that. 
In the written comments, you will see requests for support for 
our graduate students, our public health faculty, the special 
projects, public health physicians, and you have just heard 
some testimony on that, preventative medicine residencies, 
minority recruitment programs, NIH research, maternal and child 
health, and others.
    I also want to emphasize that there is a shortage of 
adequately trained public health professionals. Again, you just 
heard some testimony on that. With partner with the family 
practice and preventative medicine in training. The Department 
of Health and Human Services reported to Congress the need for 
trained public health professionals could double the current 
level, especially because of the changes with managed care and 
the need to look at prevention. A lot of studies show that we 
are under represented in terms of people with public health 
training.
    But my more informal comments, I first of all want to thank 
you, Mr. Miller, and this committee for the work that you have 
done over the last few years and your leadership in promoting 
and protecting the health of the American people through your 
support of research and training. As you know, every dollar 
spent on preventing disease results in significant savings. In 
the City of Chicago alone, money spent on detection and 
treatment of tuberculosis in the last year saved over $7 
million in hospitalizations and yet it was very hard to find 
those prevention dollars.
    Public health measures account for 25 of the 30 years of 
life expectancy that we have gained in this century. Since you 
were just at CDC, you probably heard these figures. We are 
proud of them. You have probably also heard Doctor Satcher say 
that although health care costs have been rising, we spend, he 
is saying, 1 percent of our health care dollars on prevention. 
We urge you to continue supporting research in key public 
health areas and training of public health professionals 
because if 1 percent is getting us so much, we ought to be able 
to do a lot better.
    Also, Mr. Chairman, let me describe how some of the 
agencies that fall under the purview of this committee work in 
partnership with the School of Public Health. I saw examples of 
this as well in your own State. As you know, I have the honor 
of leading the only School of Public Health in the State of 
Illinois and I am also on the Board of Health for the City of 
Chicago, so I speak from a variety of perspectives. Our school 
and other schools work in close partnership with Federal, 
State, county, and city agencies. We multiply the dollars that 
come to the schools. I would like to list how some of these 
programs impact, just to give you a few examples.
    CDC, which you just visited, at Illinois we have one of the 
largest, most diverse of the CDC-funded prevention centers. We 
have now only 15 percent of the funding coming from the CDC 
original prevention center grant and the rest of it is coming 
from NIH, from private agencies, HRSA funds, other Federal 
funds. So we've done a lot with that 15 percent.
    We have projects on heart disease prevention for older 
adults, for example, 35 community sites in minority 
communities. Heart disease still kills nearly as many Americans 
as all other diseases combined. We have skin cancer prevention 
for youth, HIV/AIDS prevention for adolescents, violence 
prevention for adolescents in 15 high-risk Illinois high 
schools, smoking prevention which had reached over 100,000 
Chicago area smokers, including youth.
    With the Cancer Institute, as you probably also heard at 
CDC, one in three Americans now living will have cancer. We 
have NCI funding on smoking cessation, communication in cancer 
prevention, evaluating the Morehouse Black Leadership 
Initiative in cancer, mammography, pap smears, training grants 
for minority researchers interested in careers in cancer 
control. We also have a lot of other NIH projects ranging from 
TB prevention and treatment to diabetes registries. We have the 
only brain tumor registry in the Nation which functions for the 
entire Nation. We have programs on ovarian cancer, birth 
outcomes, environmental pollution, and I could go on and on. We 
are a relatively small school.
    We also have six NIDA grants at the school. One of them has 
been singled out as demonstrating the effectiveness of AIDS and 
IV drug abuse interventions in preventing sero conversion and 
in helping drug abusers return to a more normal life. This has 
been picked up now as a local, State, and national initiative. 
In fact, at NIDA's request, I ran another workshop in your 
State, in Miami, in Spanish for Andean researchers working on 
drug abuse prevention with the University of Miami Medical 
Center people.
    We also have a maternal and child health training grant, 
preventative medicine residency, we have a NIOSH-funded 
education center, and we are the leading academic partner of 
Governor Edgar's Project Safe Illinois where we work with 
industry, labor, and Government to improve the health and 
safety of Illinois workers.
    We also have a Fogarty Center for research and training 
international and environmental health, and our faculty member, 
Doctor Daniel Rohorsheck was recently honored at the White 
House for his work on the Chernobyl incident. We also have 
sponsored a NATO advanced research workshop on public health 
consequences of environmental pollution.
    So we do support this committee's interest in increasing 
appropriations directed towards biomedical research. I wanted 
to give you these examples to show the multiplier effect that 
these funds have. They do not just do basic research, they work 
in our cities, they work in our counties, they work in our 
States, they work in our Nation, and they work internationally.
    I would like to conclude with an analogy made by C. Everett 
Koop where he said that ``clinical medicine was like rescuing 
people once they were in the raging river, and public health 
was on the riverbanks trying to keep them from falling in in 
the first place.'' Obviously, we need to work together. But the 
more people we can keep from falling in, the less we are going 
to spend in the raging river. Thank you very much.
    [The prepared statement of Susan Scrimshaw follows:]

[Pages 753 - 761--The official Committee record contains additional material here.]


    Mr. Miller. Thank you very much. As you know, we did spend 
the day Monday at CDC and also Morehouse College of Medicine 
that afternoon, by the way, where they are starting a master's 
program in public health. One of the things we try to do is go 
out and see the programs. I did a fully day at the University 
of South Florida and they are very proud of their Public Health 
School because it is one of the few in the country. It is a 
relatively new school and so I was very impressed with what 
they offer there too.
    Thank you for your very fine testimony.
    We are going to have to take a short recess. I hate to do 
this again. I apologize for this but that vote messed things up 
very badly for us. We have three more witnesses waiting so we 
will get back as soon as we can.
    [Recess.]
                              ----------                              

                                         Wednesday, April 16, 1997.

                                WITNESS

JEANNE CARPENTER, EPILEPSY FOUNDATION OF AMERICA

    Mrs. Northup [assuming chair]. I would like to bring this 
hearing back to order so that we can complete this afternoon's 
agenda. I am Ann Northup. I am serving as chairman for the 
remainder of the hearing.
    The first witness I would like to call is Jeanne A. 
Carpenter, President-elect of the Epilepsy Foundation of 
America. Good afternoon, Jeanne.
    Ms. Carpenter. Good afternoon, Congresswoman. I am Jeanne 
Carpenter. I am appearing today in my capacity as President-
elect of the Epilepsy Foundation of America. We appreciate the 
opportunity to testify in support of increased funding for the 
Epilepsy branch of the National Institute of Neurological 
Disorders and Stroke at the National Institutes of Health. I 
want to thank you, Congresswoman Northup, as well as all the 
other members of the committee, and particularly Chairman 
Porter, for your support in demonstrating continued research 
funding for NIH. Of course, we urge your continuing support.
    EFA is the national voluntary health agency that works for 
people affected by seizures through research, education, 
advocacy, and service. EFA and its 70 affiliates throughout the 
United States represent the interests of the over 2,000,000 
Americans with epilepsy.
    While EFA supports additional research in a broad number of 
areas that are important to people with epilepsy, including 
research on the ketogenic diet and on environmental triggers 
for photosensitivity, my comments today will focus on the need 
for increased medical research on issues confronting women with 
epilepsy.
    Epilepsy is a chronic condition that usually requires a 
lifetime of continual medical treatment and education. There 
currently is no cure for epilepsy. While many people with 
epilepsy are able to control their seizures with medication, it 
is not widely appreciated that approximately 500,000 
individuals have intractable or uncontrolled seizures. The 
economic cost and the emotional toll for these individuals and 
their families is certainly devastating.
    I appear today before you as a woman with epilepsy who has 
been helped immeasurably by scientific and medical research. 
How- 
ever, I also represent the over one million American women with 
epilepsy who have uncertain futures as they move through the 
life cycle.
    Women like myself do not have answers on how seizures and 
medication will affect their health during adolescents, in 
family planning, in pregnancy, child birth, or menopause. We do 
not have answers because the research which can provide those 
answers has not been undertaken.
    While many epilepsy related issues are common to both men 
and women, women with epilepsy face very unique health issues 
and challenges in coping with their seizure disorders. 
Forexample, many women have reported EFA that they have been advised 
erroneously that they should not become pregnant if they have epilepsy. 
We know that hormonal changes at puberty, during pregnancy, during the 
menstrual cycle, and at menopause can affect women's seizures but the 
mechanism as to how this occurs is not clear. We know that there is an 
increased incidence of reproductive endocrine disorders in women with 
epilepsy but not how to prevent or treat them. We know fertility is 
decreased for many women with epilepsy but we do not know why.
    Women with epilepsy, their family members, their health 
care practitioners are all looking for answers, answers that 
additional research could provide.
    My term as president of EFA coincides with a kick-off of a 
special EFA initiative focusing on the unique challenges facing 
women with epilepsy. We are developing consumer and 
professional educational materials targeted to some of these 
issues. However, it is clear that additional Federal commitment 
to research in this and related areas must be undertaken if we 
are ever to fully understand all of the issues involved.
    EFA, in recognizing the urgency of these concerns, has 
assembled a panel of experts in the field to develop 
recommendations for additional research and professional 
education. Our written testimony provides more detail on the 
recommendations for additional research.
    The Epilepsy branch within the NINDS is vital to continuing 
the fight against epilepsy. We encourage NIH as a whole, and 
the NINDS in particular to play an important role in solving 
some of these research questions by sponsoring additional 
research addressing women's issues. It is our understanding 
that the Professional Judgement Budget for NIH and the NINDS 
calls for a 9 percent increase in funding in order to support 
what experts in the field believe is needed to support 
scientifically worthy research projects. We urge the 
subcommittee to provide that level of funding.
    Finally, I would like to mention a valuable program within 
the Centers for Disease Control, which has been mentioned 
several times this afternoon, that focuses on early detection 
and intervention in epilepsy. Only by providing the information 
and education will we reduce the stigma that still surrounds 
epilepsy. We urge your continuing support of this program.
    I appreciate the opportunity to testify here today. I will 
be happy to answer any questions you may have.
    [The prepared statement of Jeanne Carpenter follows:]

[Pages 764 - 769--The official Committee record contains additional material here.]


    Mrs. Northup. Thank you. I think that our time is too 
short, but I appreciate your testimony. Thank you for coming 
before us.
    Ms. Carpenter. Thank you very much.

                              ----------                              

                                         Wednesday, April 16, 1997.

                                WITNESS

DANIEL ZINGALE, CHRISTINE LUBINSKI, AND JAVIER SALAZAR, AIDS ACTION 
    COUNCIL

    Mrs. Northup. Next, we have Mr. Daniel Zingale, the 
Executive Director of the AIDS Action Council. Welcome, Mr. 
Zingale.
    Mr. Zingale. Thank you. Thank you for pronouncing my name 
correctly.
    Mrs. Northup. I had a little help.
    Mr. Zingale. Congresswoman Northup, I am Daniel Zingale, 
Executive Director of AIDS Action Council, the Washington voice 
for over 1,400 community-based AIDS service providers from 
across the country and the men, women, and children living with 
HIV and AIDS that they serve. I am joined by Christine Lubinski 
and Javier Salazar, also with AIDS Action Council. Our work is 
supported by membership dues and by individual donations.
    We are at a pivotal moment in the history of the AIDS 
epidemic. I am sure you are aware of the many news reports 
about the recent dramatic advances in the care and treatment of 
HIV disease. The good news is that last year, for the first 
time in the history of the epidemic, the number of people dying 
from AIDS decreased significantly--by 13 percent overall. This 
dramatic drop in AIDS deaths is attributable to a combination 
of factors; the development of improved treatments for battling 
both HIV and the opportunistic infections that accompany it, 
improving standards of care, and increased access to care for 
some Americans.
    The bad news is that this epidemic is far from over. While 
the overall number of AIDS deaths declined last year, the death 
rate for women with HIV disease actually increased by 3 
percent, and death rates among people of color declined only 
nominally. These disparities highlight stark inequities in the 
availability of state-of-the-art health care that people with 
HIV and AIDS need to stay alive and healthy. To benefit from 
new drug therapies, people must have access to affordable, 
comprehensive medical and supportive services provided by well-
trained providers who understand the needs of the communities 
they serve. To access medical care, people must have a stable 
home and vital enabling services, like child care, 
transportation, appropriate case management, and substance 
abuse treatment.
    The new drugs alone are not the answer. The unfortunate 
reality is that the new combination therapies with protease 
inhibitors do not work for everyone. We are still learning 
about the potential of these new treatments. We do not have the 
answers we need about why these treatments seem to produce 
dramatic health improvements for some people and not for 
others. We do not know whether the improvements we have seen 
will be sustained over time.
    Clearly, there is still an urgent need to invest in 
additional research, not only to answer these questions, but to 
develop even more effective treatments and, ultimately, to 
discover a vaccine and a cure.
    While the overall number of people dying from AIDS declined 
significantly last year, the number of people living with AIDS 
did not. Blacks, latinos, and women accounted for increasing 
proportions of new AIDS cases in 1996. Women accounted for an 
all-time high of 20 percent of AIDS cases.
    Tragically, the number of people newly infected with HIV is 
not declining. Over a decade into the epidemic, we face the 
grim fact that every hour two Americans under the age of 25 are 
contracting HIV. Far too many people are not learning of their 
HIV status until they are hospitalized with a major AIDS-
related illness, too late to realize the full benefits of early 
intervention with the state-of-the-art therapies.
    Greater community-based education efforts and easier access 
to HIV counselling and voluntary anonymous testing are vital. 
The promising benefits of early intervention can only be 
realized through aggressive education efforts that encourage 
individuals to be tested for HIV so they can immediately be 
linked with comprehensive and coordinated systems of care.
    Of course, early intervention is not true prevention. It is 
far less expensive and more humane to prevent someone from 
becoming infected in the first place. We know what works--
community-based prevention programs that tell people the truth 
about AIDS, getting people off of drugs, and getting dirty 
needles off of our streets. Substance abuse treatment and the 
removal of barriers that now prevent local communities from 
implementing syringe exchange programs are essential parts of 
an overall HIV prevention strategy. Needle exchange programs 
are now recognized by over 65 percent of Americans as an 
effective HIV prevention measure, and they have repeatedly been 
proven to reduce HIV transmission and to save lives.
    Tough choices and wise investments by this committee have 
helped to bring about declining death rates today and an 
unprecedented sense of hope. If we invest in HIV prevention 
through CDC, in the care provided through Ryan White, and in 
the NIH to take us to the next level of research breakthroughs, 
we may be able to take pride in having helped to bring about a 
true end to this epidemic sooner than any of us believed 
possible. Thank you.
    [The prepared statement of Daniel Zingale follows:]

[Pages 772 - 779--The official Committee record contains additional material here.]


    Mrs. Northup. Thank you, Mr. Zingale. Thank you for the 
work that you all do. I wish you the best.
    Mr. Zingale. Thank you.
                              ----------                              

                                         Wednesday, April 16, 1997.

                                WITNESS

DAN EIN, M.D., THE JOINT COUNCIL OF ALLERGY, ASTHMA AND IMMUNOLOGY
    Mrs. Northup. Finally, our last speaker this afternoon is 
Doctor Dan Ein. He is the President of the Joint Council of 
Allergy, Asthma and Immunology.
    Dr. Ein. Good afternoon, Congresswoman Northup. You also 
got my name right and I congratulate you. It almost never 
happens. I think having a short name is a problem.
    Mrs. Northup. I have a name that is often mispronounced, 
too.
    Dr. Ein. I am Doctor Daniel Ein, President-elect of the 
Joint Council of Allergy, Asthma and Clinical Immunology. I am 
also a practicing allergist in Washington, D.C. I have had an 
office in downtown D.C. for the past 25 years. My organization, 
the Joint Council, is a professional, non-profit organization. 
We have got 4,000 members who are both clinicians or clinicians 
and researchers. We provide care for the over 50,000,000 
Americans who suffer from allergic diseases.
    The organization would like to express its appreciation, 
and I, as a practicing physician and allergist, would like to 
express my appreciation for the support your committee has 
given to the NIH over the years. We know it has been really 
hard with budgetary constraints and so on, but your increasing 
support has meant a great deal to us in our ability to fight 
allergic diseases.
    I am not going to read the testimony, but I would just like 
to talk to you about areas of concern that we have. Allergists 
are concerned with chronic sinus disease, with asthma, and 
other kinds of allergic diseases. They are very common. As I 
mentioned earlier, over 50,000,000 Americans suffer from these 
diseases. If we had more people in the room, I would venture to 
say a number of them could be potential patients of mine.
    These diseases can be very mild, from mild hay fever that 
requires only over-the-counter medication, to life-threatening 
illnesses, like asthma which can be a fatal disease, like 
allergic reactions to foods, antibiotics, and bee stings. 
Because of the kinds of research that the NIH has supported, we 
have gotten to learn a great deal about these diseases over the 
years and the treatments that I use these days bear no 
resemblance to the kinds of treatments that I had to use 25 
years ago when I started in practice which were much, much less 
effective than our current treatments.
    I would like to talk about one particular program though, 
because the NIH is really on the front line in taking care of 
patients with asthma. You may have seen the health section of 
the Washington Post yesterday which has on the cover this 
adorable kid who is puffing on an inhaler. This highlights two 
things. One, that asthma is serious disease of childhood. Kids 
are about 40 percent more susceptible to asthma than the 
general population, and minority children in particular are 
susceptible.
    The other thing is the headline which says ``New Attack on 
Asthma. Doctors Now Recommend Early Aggressive Treatment.'' 
This article was triggered by a program that was set up by the 
National Heart, Lung, and Blood Institute about ten years ago 
to develop guidelines for the treatment of asthma. These 
guidelines have been disseminated widely throughout the country 
to practitioners, even managed care organizations send these 
out. I get these from the HMOs that I participate with. It is 
the ``gold standard'' by which we practice asthma treatment. 
Their new revisions just came out this past month. These are 
revisions that we have all been excited about and that have 
received wide attention and comment. To me, this demonstrates 
the broad reach of the NIH programs and how they really help 
those of us who practice on the front line.
    So, in summary, we have learned a lot but we have a lot 
more to learn. We appreciate your continued support. We would 
favor a 9 percent increase in the NIH budget. I thank you.
    [The prepared statement of Daniel Ein, M.D., follows:]

[Pages 782 - 789--The official Committee record contains additional material here.]


    Mrs. Northup. Thank you for your testimony and thank you 
for your service. We all know that research budget is very 
important. We are looking for the money. Thank you.
    Dr. Ein. Thank you.
    Mrs. Northup. That concludes the testimony for this 
afternoon.
    The subcommittee stands adjourned until 10:00 a.m. tomorrow 
morning. Thank you.
                            ----------

                                          Thursday, April 17, 1997.

                               WITNESSES

DAVE KREPCHO, EXECUTIVE DIRECTOR, SOUTH FLORIDA BREAD FOOD BANK
HON. WILLIAM LEHMAN, RETIRED U.S. CONGRESSMAN

    Mr. Dickey [assuming chair]. Before we begin, I would like 
to acknowledge a very special guest. Representative Lehman is 
here. How are you doing? [Applause.]
    Was this your committee?
    Mr. Lehman. No, I was next door.
    Mr. Dickey. Next door. All right. We are glad to have you 
and glad to see you. You are a wonderful addition anytime you 
come around.
    For this morning's hearing, I want to remind witnesses of 
two new provisions of the Rules of the House. In addition to 
their written statement, nongovernmental witnesses must submit 
a curriculum vitae and a statement of Federal grant or contract 
funds they or the entity they represent have received. If you 
have any questions concerning the applicability of this 
provision, or questions as to how to comply, please contact the 
committee staff.
    We also have a very full schedule of witnesses, and it will 
be my job--and that of others following me--to enforce the 
five-minute rule strictly. I am sorry for that, but it is just 
going to be necessary if we are going to hear everybody.
    All right, we start with Congressman Lehman, my friend.
    Mr. Lehman. I have two people with me today. The first is 
the Food Bank----
    Mr. Dickey. The Food Bank?
    Mr. Lehman. Yes.
    Mr. Dickey. Okay. What is his name? Dave Krepcho. Okay.
    You each have five minutes. Be sure to speak into the 
microphone.
    Mr. Lehman. I will not need five minutes.
    Mr. Chairman, it is a privilege to be with you today, and 
you look very nice, Mr. Chairman. [Laughter.]
    Mr. Dickey. Thank you.
    Mr. Lehman. Tell Chairman Porter that I hope his back is 
soon better, and I hope to see him soon.
    Mr. Dickey. All right, I will do that.
    Mr. Lehman. I am a member of the Board of Directors of the 
Daily Bread Food Bank, and I would like to yield my time to Mr. 
Krepcho, who is the Executive Director of the Daily Bread Food 
Bank in Miami. He has an interesting program to present to this 
subcommittee, and at this time I would yield to David Krepcho.
    Mr. Dickey. You have five minutes.
    Mr. Krepcho. Thank you very much. Daily Bread Food Bank 
really appreciates the opportunity to present this idea.
    I am the Executive Director of the Daily Bread Food Bank in 
Miami, and we cover the area of Miami, Fort Lauderdale, and the 
West Palm Beach area. We are a nonprofit organization that 
collects surplus food and distributes it to charitable 
organizations that feed needy people in the South Florida area, 
and we are a member of the Second Harvest National Network of 
Food Banks. There are 181 of those across the country.
    The request is for funding of a demonstration project for 
an on-the-job training program, and the design is to bring 
people off the welfare rolls and help them become self-
sufficient. It is based on a successful test pilot program that 
we did in Miami, and the request is for a 10-city demonstration 
project, 10 cities across the country, at approximately 
$200,000 per city.
    The need for this kind of project fills a very large demand 
as people are looking to get off of welfare. There are many, 
many people looking for jobs, and in South Florida alone, 
poverty has risen about 4 to 5 percent, according to the latest 
Census Bureau statistics, and in Miami alone there are about 
50,000 people that will need to find jobs to receive their 
benefits, and there are only about 5,000 jobs available, 
according to a study.
    The design of the program works well, in that as not-for-
profits are being asked to take up more of the slack, as some 
of the Government cutbacks are happening, we already have 
limited resources. This program provides us a source of labor, 
helps people learn basic job skills, and helps feed needy 
people in their communities.
    The not-for-profit environment is very suitable to bringing 
up people, before they go into a corporate world or private 
industry--the transition would be much smoother. There are some 
private companies that have tried it with some limited success, 
but we believe the not-for-profit world can work well.
    It is recommended that the 10 cities be used, half of them 
perhaps rural, half of them urban, just to give you a quick 
example of the test that we did in Miami. It helps empower 
unemployed individuals; it helps teach them the basic job 
skills; it helps leverage the existing resources of the Food 
Bank. For every dollar invested, we can show how enough food 
for 10 meals is distributed through this program.
    Mr. Dickey. Tell me what your administrative cost 
percentage is. Do you know?
    Mr. Krepcho. Our administration cost is 12 percent of total 
cost.
    Mr. Dickey. Not bad.
    Mr. Krepcho. We consider ourselves extremely efficient.
    Mr. Dickey. Much more so than the Federal Government. 
[Laughter.]
    Mr. Krepcho. We fill the need for the additional demand. We 
need the extra labor to sort through this donated food and 
operate our four warehouses, and it collaborates with other 
nonprofit organizations, Government bodies, and State 
educational institutions, it also provides a qualified labor 
pool to our very food donors, such as retailers like Winn-Dixie 
or Publix Supermarkets that run huge food warehouses. They are 
very open to the concept.
    The program description is in my written testimony. I won't 
go into detail on it, but it covers nine different areas in the 
curriculum, from safe food handling to inventory management----
    Mr. Dickey. Go into safe food handling. How do you assure--
well, you only have 30 more seconds, but how do you assure safe 
food being handled?
    Mr. Krepcho. Safe food handling would be done through the 
Cooperative Extension Service, through a State university. They 
would teach people how to store food properly, refrigerate it 
properly, and the danger zones of handling food. They get 
certified on a course----
    Mr. Dickey. But you do get excess food from other areas, 
don't you?
    Mr. Krepcho. Oh, we do. All of our food is donated.
    Mr. Dickey. So the perishables--you deal with perishables? 
Or you do not?
    Mr. Krepcho. Yes, sir, we do.
    Mr. Lehman. I think he said something about rice from 
Arkansas.
    Mr. Dickey. Rice from Arkansas. [Laughter.]
    You keep pounding that Arkansas thing, and I am going to 
start----
    Mr. Krepcho. But all perishable foods are refrigerated at 
proper temperatures, or frozen, if they are frozen foods.
    Mr. Dickey. Right. Thank you, sir. Submit the rest for the 
record, if you would.
    Mr. Lehman. Mr. Chairman, can I have just half a minute?
    Mr. Dickey. Yes, sir.
    Mr. Lehman. I know welfare is a State-related program now, 
and perhaps if you could give us a grant, we could get a 
matching grant from the State of Florida, so they would be 
involved as well. So we could approach it from two angles.
    I want to thank you for your time.
    Mr. Dickey. Thank you. Thank you. You are going to stay, 
though, aren't you?
    Mr. Lehman. Yes. I will be right here.
    Mr. Dickey. Okay. You have got the next one.
    [The prepared statement of Dave Krepcho follows:]

[Pages 794 - 800--The official Committee record contains additional material here.]
                                ----------

                                          Thursday, April 17, 1997.

                               WITNESSES

MORRIS J.W. GAEBE, JOHNSON & WALES UNIVERSITY
HON. WILLIAM LEHMAN, RETIRED U.S. CONGRESSMAN
RICH TARANTINO
BRENDA BASSETT

    Mr. Dickey. All right, this is Dr. Morris J.W. Gaebe, 
Chancellor--it is Chancellor of something; what is it? 
[Laughter.]
    Well, let us go to Brenda Bassett. Maybe I can get that.
    Brenda is National Sales Associate at Johnson & Wales 
University--oh, you are representing Johnson & Wales 
University.
    Mr. Gaebe. Yes, I am the Chancellor of Johnson & Wales 
University.
    Mr. Lehman. Mr. Chairman, before you start the testimony, I 
am on the Advisory Board for Johnson & Wales in Miami, and they 
are an institution in my old district that has done more for 
unemployment and job security than anything in my district. I 
would like to see that move on in this progressive area. Brenda 
Bassett's father-in-law, 50 years ago, was able to expand my 
business because he was Chairman of the First National Bank in 
Miami.
    Mr. Dickey. Car loans, I know. [Laughter.]
    He kept your reserves low, didn't he? [Laughter.]
    Mr. Lehman. Right.
    Mr. Dickey. Yes, sir, Chancellor.
    Mr. Gaebe. At Johnson & Wales we have designed a model 
culinary arts certificate program to train and to place welfare 
recipients in entry-level positions in the food service 
industry. As you probably know, the food service industry is 
the largest employer of people in the United States.
    The primary outcome will result in trained individuals 
becoming employed taxpayers, and they therefore will no longer 
be dependent on welfare and so forth.
    I would like to go over some of the high points of this 
program. It would be a Culinary Arts Certificate Program. It 
would last for nine months, and it can begin anytime because it 
is a self-contained educational unit.
    It is hands-on educational training, and the qualifications 
to enter it do not require a high school diploma, because we do 
not expect all of the people to be at that level of education. 
But once the participants get into it, we are going to give GED 
credits, so you can--in this program--earn a GED diploma.
    It is a pilot program, so we are asking for money to train 
33 participants. Considering the background of these people, we 
are going to throw in a lot of other things besides the 
culinary program. For instance, daycare will be--
    Mr. Dickey. Give me the amount, again, the amount and the 
number of students again, please.
    Mr. Gaebe. It is 33.
    Mr. Dickey. And how much is the amount of money?
    Mr. Gaebe. It is $575,000.
    Mr. Dickey. That is a small amount. Thank you.
    Mr. Gaebe. The daycare will be provided within these funds 
for children of families with dependent children. We will 
provide transportation to the classroom, and we will have a 
maximum of 20 students per faculty member. We will provide the 
placement. We have always had 100 percent placement of our 
graduates, and we feel that we can certainly place these people 
in jobs after they have finished the program.
    Mr. Lehman. And they stay there.
    Mr. Gaebe. They stay there, that is right.
    We are also going to have counseling and tutorial support, 
which is provided by the university to all of our students.
    It will include such things as nonviolence and crime and 
drug prevention workshops. There will be a lab operation every 
day from 4:00 to 10:00 p.m., or six hours per day, so for the 
program it will include 864 hours.
    We want to start with 33 people, and we anticipate that we 
can hold 90 percent, or that 30 of them will graduate. We have 
been doing this for many years in all kinds of different 
programs, so we have a pretty standard format for all of this.
    We estimate that 13 will be male, and 20 will probably be 
female. This is what we are looking at. There will be 28 that 
will be black, and 3 will be Hispanic. We are working in that 
area of Florida.
    The target groups will be AFDC recipients, the homeless, 
single heads of households, and economically disadvantaged. We 
will have community outreach and recruitment activity. The 
classes will meet Monday through Thursday, and we will have 
work opportunities available for them on Friday, Saturday, and 
Sunday, which is like an internship while they are working on 
it.
    Mr. Dickey. You have 30 seconds.
    Mr. Gaebe. Okay.
    Mr. Dickey. Could I ask you a question during your 30 
seconds?
    Mr. Gaebe. Go right ahead.
    Mr. Dickey. Nine months license--what is it, a nine months 
certificate? Why is that?
    Mr. Gaebe. Well, nine months is usually a standard school 
year.
    Mr. Dickey. Okay.
    Mr. Gaebe. Thirty-six weeks is a school year.
    Mr. Dickey. Oh, that is how long it takes to get it?
    Mr. Gaebe. That is how long they will be in school.
    Mr. Dickey. Oh, I had misunderstood. I thought you said it 
expired at the end of nine months. There is a difference,is not 
there?
    Mr. Gaebe. They will be in school for one school year.
    Mr. Dickey. I think it is a wonderful program.
    Mr. Lehman. Mr. Chairman, once again, it is necessary to 
make this contingent on State matching funds, because welfare 
is a State program now.
    Mr. Dickey. Yes, sir.
    Ms. Bassett, you have five minutes.
    Ms. Bassett. No, I let the Chancellor speak for us.
    Mr. Dickey. Thank you.
    Mr. Gaebe. I had a couple other things----
    Mr. Dickey. You have run out of time. [Laughter.]
    I am so sorry. We have got to move on.
    Mr. Lehman. If you can not make your point in five minutes, 
you are out of here. [Laughter.]
    Mr. Dickey. I would like to come see you all sometime.
    Ms. Bassett. We would love to have you.
    Mr. Dickey. All right. Thank you so much. I am sorry we had 
to rush you off.
    [The prepared statement of J.W. Gaebe follows:]

[Pages 804 - 814--The official Committee record contains additional material here.]
                                ----------

                                          Thursday, April 17, 1997.

                                WITNESS

ALLAN JENSEN, M.D., AMERICAN ACADEMY OF OPHTHALMOLOGY

    Mr. Dickey. How are you, sir? Welcome, Dr. Jensen. You have 
five minutes.
    Dr. Jensen. Thank you, Mr. Chairman.
    I am Allan Jensen. I am an Associate Professor at Hopkins, 
and also the Senior Secretary for Advocacy of the American 
Academy of Ophthalmology. We represent approximately 20,000 eye 
physicians and surgeons whose patients have benefitted from the 
advances in eye care made possible by the National Institutes 
of Health and the National Eye Institute.
    I would like to speak in support of the NEI and the 9 
percent increase for 1998 that the Ad Hoc Group for Medical 
Research Funding has proposed for NIH overall.
    It is estimated that 80 million Americans suffer from some 
vision-threatening disorder, and more than 10 million have 
experienced irreversible loss of sight. This translates out to 
$22 billion in direct medical costs and $16 billion in indirect 
costs as a result of ocular disease. The personal toll brought 
about by vision loss is immeasurable. These costs are expected 
to continue to rise as increasing longevity raises our exposure 
to diseases associated with aging, thus the need to develop 
effective, cost-sensitive therapies for vision disorders is 
becoming more acute.
    In the time that I have I would like to focus on one of 
these disorders, and that is diabetic retinopathy. Diabetic 
retinopathy is the leading cause of blindness in Americans 
under the age of 60. It affects approximately half of the 
Nation's 16 million diabetics, and its impact is likely to 
become greater as diabetic patients live longer with their 
disease. NEI clinical trials have shown the effectiveness of 
laser therapy for the treatment of diabetic retinopathy, and it 
is projected that if all eligible diabetic patients received 
appropriate treatment, over $167 million could be saved each 
year in disability benefits alone.
    The proliferation of abnormal new blood vessels of the 
retina remains one of the most serious threats to vision in 
diabetic patients. The identification of a growth factor which 
appears to modulate new vessel proliferation represents a giant 
step toward the development of therapies to prevent this 
complication. However, further study is needed to identify the 
mechanisms by which disordered glucose metabolism has such a 
profound effect on the retinal vessels.
    In addition, diabetic retinopathy is but one of many 
retinal disorders characterized by loss of vascular integrity 
and uncontrolled growth of new vessels. New insights into the 
causes of its development and progression may help us better 
understand and treat other retinal diseases, such as sickle 
cell retinopathy and retinopathy of prematurity.
    There is more information in my printed testimony, and I 
appreciate the opportunity to testify on behalf of the Academy. 
I will be glad to answer any questions.
    Mr. Dickey. I have no questions, but thank you for yielding 
some time.
    Dr. Jensen. Thank you.
    [The prepared statement of Allan Jenson, M.D., follows:]

[Pages 817 - 827--The official Committee record contains additional material here.]
                                ----------

                                          Thursday, April 17, 1997.

                                WITNESS

WILLIAM L. KISSICK, M.D., COLLEGE OF PHYSICIANS OF PHILADELPHIA

    Mr. Dickey. Dr. William Kissick, Executive Director of the 
College of Physicians of Philadelphia. Welcome to D.C.
    Dr. Kissick. Thank you very much, Mr. Chairman.
    Mr. Dickey. You have five minutes.
    Dr. Kissick. Good morning, Mr. Chairman. I am Dr. William 
Kissick. I appear today on behalf of the College of Physicians 
of Philadelphia, where I have been a Fellow since 1969. I am a 
Professor in the School of Medicine in the Wharton School of 
the University of Pennsylvania. Prior to my appointment at the 
university in 1968, I spent seven years in the Federal 
Government, in the then-Department of HEW, where I helped to 
draft Medicare.
    Mr. Dickey. You might say you survived seven years. 
[Laughter.]
    Dr. Kissick. The college was founded in 1787, and is the 
oldest medical society in the United States. Today our 
membership consists of approximately 2,000 distinguished 
physicians in Pennsylvania, New Jersey, and Delaware, as well 
as nonresident members throughout the Nation.
    Three of the elements which have been characteristic of the 
college's activities from our founding are community service, 
continuing education for physicians, and increasingly important 
in today's society, health education for the public. Today our 
members are greatly concerned about the growing communication 
gap which divides the public andproviders of health care. We 
believe that seeking to educate and empower consumers with physician-
based health information in nonclinical settings provides an important 
opportunity to bridge the gap.
    The college opened the C. Everett Koop Community Health 
Information Center to help consumers who want to take a more 
active role in the management of their health and that of their 
families. Visitors to the center have access to on-line health 
data bases, CD ROM, video cassettes, and a special library of 
more than 500 books written specifically for patients and 
health care consumers.
    The college appreciates this subcommittee's continuing 
interest in the Koop Center. We are pleased that the Centers 
for Disease Control is working to evaluate the Koop Center's 
contributions to consumer knowledge about health care.
    The college has also been a pioneer in the area of medical 
ethics, a popular topic during the past several years, with 
issues ranging from organ donation to assisted suicide to the 
more recent cloning of a sheep in Scotland. As advances in 
biomedical research accelerate, the legal, medical, and 
theological communities have been struggling to help the public 
understand the implications of these issues.
    The College of Physicians of Philadelphia was the first 
medical society in America to develop medical ethics standards. 
The college's standards were subsequently adopted by the 
American Medical Association when it was formed in 1847. Last 
month, the AMA hosted a conference in Philadelphia to celebrate 
its 150th anniversary and the physicians community's commitment 
to medical ethics.
    The college is currently collaborating with the University 
of Pennsylvania Center for Bioethics on a project on the 
history of medical ethics. They will conduct conferences that 
link medical ethics of the past to the bioethical problems of 
the present and the future to make knowledge on the subject of 
biomedical ethics accessible to professionals, scholars, the 
press, and the public.
    We ask that this subcommittee provide sufficient funding to 
the Office of Public Health History in the Department of Health 
and Human Services to enable that office to collaborate on this 
important initiative.
    We also ask that this subcommittee provide sufficient 
support to the CDC for their ongoing work in the area of 
infectious diseases. As Dr. Joshua Lederberg, a Nobel Laureate 
in 1958, maintains, there exists an increasing emerging threat 
of, in his words, ``microbial catastrophe.''
    The college is committed to working with CDC to develop a 
unique exhibit and public education program to improve public 
understanding of infectious disease. We look forward to working 
with CDC and this subcommittee on this extremely important 
public policy issue.
    Through one of the world's leading historical medical 
libraries, and the strength of our consumer outreach programs, 
the college looks forward to continuing to assist the public 
and policymakers to make sound choices and judgments related to 
health care. We hope that this subcommittee will continue to 
look to the college as a resource for information on how 
previous generations addressed issues similar to those that we 
face today, and to our efforts to share with the public 
important information on how to lead healthier lives.
    Thank you, Mr. Chairman, for the opportunity to present the 
college's testimony.
    Mr. Dickey. Thank you, Dr. Kissick.
    [The prepared statement of William Kissick follows:]

[Pages 830 - 837--The official Committee record contains additional material here.]
                                ----------

                                          Thursday, April 17, 1997.

                                WITNESS

ALLEN W. ANDERSON, AMERICAN ASSOCIATION OF DENTAL SCHOOLS

    Mr. Dickey. Next, we have Dr. Allen W. Anderson, Dean of 
the College of Dentistry, University of Illinois at Chicago, 
representing the American Association of Dental Schools.
    I read pretty well, don't I? [Laughter.]
    How you doing?
    Mr. Anderson. Thank you, Mr. Chairman.
    Mr. Dickey. You are a dentist?
    Mr. Anderson. That is correct.
    Mr. Dickey. Okay. Try to make it painless, will you? 
[Laughter.]
    Mr. Anderson. I certainly will. You can help us, too. 
[Laughter.]
    Mr. Dickey. You are right. We have the same reputation. 
[Laughter.]
    Mr. Anderson. I am Allen Anderson, a pediatric dentist and 
the Dean of the College of Dentistry at the University of 
Illinois at Chicago. On behalf of the American Association of 
Dental Schools, I am pleased to have the opportunity to present 
our fiscal year 1998 funding recommendations for health 
professions training and research programs especially important 
to dental education.
    Mr. Chairman, at a time when many decry the shortage of 
primary care health professionals and search for programs that 
will attract generalists, we are pleased to present a cost-
effective primary care success story. General Dentistry 
Residency programs provide graduates with primary care 
training; 87 percent of those students who receive general 
dentistry training remain in primary care practice. Dentists 
who have had the benefit of this advanced residency training 
can serve a broad range of patient needs and make fewer 
referrals to dental specialists. This is especially important 
in rural and underserved urban areas.
    For instance, our general dentistry residents at the 
University of Illinois at Chicago deliver care in a variety of 
settings to special populations, including mentally disabled 
individuals in Chicago's El Valor sheltered workshop, elderly 
and medically compromised patients at the University of 
Illinois Hospital, residents in nursing homes in the Chicago 
area, and low-income minority patients in our college dental 
clinics.
    I am unable to imagine why, when the Administration seeks 
to promote primary care education and expand access to health 
care. The fiscal year 1998 budget proposal groups general 
dentistry with seven other Title VII programs in a cluster, and 
slashes the overall funding level by more than 55 percent. If 
implemented, the Administration's budget would severely 
jeopardize all current General Dentistry Residency programs and 
any potential new grantees, in addition to the oral health care 
access special populations now receive as a benefit of this 
training program. General dentistry is a primary care success 
story and deserves continued and increased Federal support. We 
urge the subcommittee to fully fund this cost-effective and 
proven program at $6 million in fiscal year 1998.
    The Ryan White HIV/AIDS Dental Reimbursement Program 
accomplishes two major Federal objectives in the fight against 
AIDS: support for oral health services for patients of limited 
means, and clinical experience for dental students and 
residents in the care and management of people living with HIV/
AIDS.
    The Ryan White HIV/AIDS Dental Reimbursement Program 
represents a partnership between the Federal Government and 
dental education programs, in which the Government partially 
offsets the costs these programs incur by serving a 
disproportionate share of indigent AIDS patients. Illinois 
dental education programs provide twice the amount of 
uncompensated care to people living with HIV/AIDS than what is 
reimbursed through this program.
    Unreimbursed costs will continue to rise as the number of 
HIV patients increases, while they will live longer as a result 
of the tremendous strides we have made in both the research and 
treatment of this disease.
    AADS recommends a very modest $1.5 million increase for 
this program in fiscal year 1998 to ensure the continuationof 
this critical service and allow for increased numbers of HIV/AIDS 
patients to be served.
    We also strongly support the National Health Service Corps 
Scholarship and Loan Forgiveness Programs. Last year, the 
Congress recognized the need to increase dental participation 
in the National Health Service Corps.
    Mr. Dickey. You have 30 seconds.
    Mr. Anderson. We are most appreciative of this support and 
want to continue to work with you toward this end.
    I would also urge your continued strong support for the 
Title VII programs that play a critical role in our ability to 
recruit and retain disadvantaged students in dentistry. The 
modest Federal investment in the disadvantaged student 
initiatives enabled 21 disadvantages students to be enrolled at 
the University of Illinois at Chicago College of Dentistry and 
pursue careers in oral health care. Ninety percent of the 
students who benefit from these programs at our institution 
continue to deliver care to underserved populations when they 
enter professional practice.
    Finally, Mr. Chairman, on behalf of AADS and the University 
of Illinois Medical Center I want to express our gratitude for 
the leadership role this subcommittee has taken in biomedical 
research. We endorse the testimony of the American Association 
for Dental Research regarding priorities and funding of the 
National Institute of Dental Research in fiscal year 1998.
    Thank you, Mr. Chairman.
    Mr. Dickey. Thank you, sir.
    [The prepared statement of Allen Anderson follows:]

[Pages 840 - 848--The official Committee record contains additional material here.]
                                ----------

                                          Thursday, April 17, 1997.

                                WITNESS

PAUL KIMMELMAN, AMERICAN ASSOCIATION OF SCHOOL ADMINISTRATORS

    Mr. Dickey. Next we have Dr. Paul Kimmelman, Superintendent 
of West Northfield School in Northbrook, Illinois, but more 
importantly, a constituent of our Chairman, John Porter, John 
Edward Porter.
    We are glad to have you here. You are representing the 
American Association of School Administrators?
    Mr. Kimmelman. Yes, sir. Thank you for the opportunity for 
me to be here today and to speak on behalf of the 15,000-plus 
members of the American Association of School Administrators.
    Mr. Dickey. You have five minutes.
    Mr. Kimmelman. We would also like to extend our 
appreciation for the unprecedented $3.5 billion increase from 
the Appropriations Committee that education received last year.
    Mr. Dickey. I wonder if that had anything to do with where 
you are from? [Laughter.]
    Mr. Kimmelman. I would like to think that it was partially, 
but more importantly, to help children. It is a little 
different today in that Congressman Porter, your Committee 
Chairman, and I have had numerous discussions on education. So 
rather than insult the intelligence of the committee, I don't 
choose to read our prepared testimony today, but rather just 
react with some feelings about education and try to represent 
what we believe is extremely important in the future.
    Our organization holds very deeply-held beliefs in a high 
priority for Title I funding and IDEA funding in the future. 
Let me say to you that we were somewhat disappointed with the 
President's budget proposal to you with respect to Title I in 
that it did not seek an increase in funding.
    I would like to suggest to you that I have been a 
superintendent in a school district, an urban district, that 
was under a Federal desegregation order and had numerous 
disadvantaged children. I am currently superintendent in a 
school district that I think most people would recognize as 
being more affluent, but still having some disadvantaged 
children.
    I would like to say to you, with respect to Title I, that 
in my heart I believe that it is a very good program. I believe 
that it is meeting the needs of children and it is helping 
those who have significant disadvantages to achieve at a higher 
standard.
    Mr. Dickey. Would you acknowledge that there are some 
abuses of that program?
    Mr. Kimmelman. I can not specify that there are abuses, but 
my next statement would have been to Congressman Porter, that 
the fact is that there is one side that has researchers that 
say the program works; there is another side that says that the 
program does not work. What I think is that this committee--
which I would have stated in my conclusion--in my own opinion, 
holds the power to bring about the necessary reforms that 
should make the program a world-class program.
    Mr. Dickey. Do you mind if I can ask you some questions?
    Mr. Kimmelman. Not at all.
    Mr. Dickey. If we do the status quo and we keep doing the 
same thing, is anything going to change? If we just keep 
increasing the amount of money and keep honoring your 
commitment, are we going to have any changes in the classroom? 
That is what I want to know.
    Mr. Kimmelman. I believe that there is a positive reform 
environment in education, and if you continue to just increase 
funds, I would be concerned that the types of changes that many 
people are talking about might not in fact be made.
    Mr. Dickey. Good.
    Mr. Kimmelman. You know, we had the honor about a month and 
a half ago of a visit from the President who came to my school 
district. I coordinate the First In The World Consortium as 
well, and----
    Mr. Dickey. He had Rhodes Scholars?
    Mr. Kimmelman. Well, we don't exactly have Rhodes Scholars; 
we have future Rhodes Scholars. [Laughter.]
    But what we have done is formed a consortium of 20 school 
districts that took the Third International Math and Science 
Study, and the results of that study at our 8th grade level 
demonstrated that the students in those districts were 
performing among the very best in the world in math----
    Mr. Dickey. Let me ask you this. That is well known, but 
could you have done that without acquiring discipline in the 
classroom?
    Mr. Kimmelman. Discipline is one factor.
    Mr. Dickey. See, the difficulty that we are having in rural 
America is that we can't get control of the classrooms. Our 
teachers are telling us that the first 15 minutes are at risk 
every time, just trying to keep people sitting down and 
shutting up.
    Mr. Kimmelman. You have thousands----
    Mr. Dickey. I only have 30 more seconds. [Laughter.]
    Mr. Kimmelman. You have thousands of teachers in this 
country who are working very hard. I am married to one; I am 
the father of one. You have the power to provide funds and 
programs like Title VI that will help those of us who are on 
the front line every day with professional staff development 
that will help teachers get that discipline----
    Mr. Dickey. Can you help me? Would you give me some type of 
letter or memo about how we can change the approach on 
discipline, sometime?
    Mr. Kimmelman. I certainly can do that.
    Mr. Kimmelman. If you can give me 30 more seconds to talk 
about one of our priorities.
    Mr. Dickey. I cannot give you 30 more seconds. How about 
that? [Laughter.]
    Mr. Kimmelman. That is not good.
    Mr. Dickey. I know, but that is discipline, though. 
[Laughter.]
    Mr. Kimmelman. But I am an unruly superintendent. 
[Laughter.]
    Mr. Dickey. All right. Okay.
    Thank you so much.
    Mr. Kimmelman. Thank you.
    [The prepared statement of Paul Kimmelman follows:]

[Pages 851 - 859--The official Committee record contains additional material here.]
                                ----------

                                          Thursday, April 17, 1997.

                               WITNESSES

LORI DICKEY, JOHN AND DENISE ANDERSON, SUDDEN INFANT DEATH SYNDROME 
    ALLIANCE

    Mr. Dickey. Lori Dickey? Where is she? A very good name. 
[Laughter.]
    John and Denise Anderson are accompanying Lori Dickey, 
representing the Sudden Infant Death Syndrome Alliance.
    You have five minutes. Who will be doing the talking?
    Mr. Anderson. We will start. Good morning.
    Mr. Dickey. Good morning to you.
    Mr. Anderson. My name is John Anderson. I am here with my 
wife, Denise. We are from Newark, New Jersey, and we want to 
thank you for this opportunity to talk to you about this issue.
    Mr. Dickey. Thank you for coming.
    Mr. Anderson. We are not scientists; we are not medical 
professionals. We are, simply put, parents, and this issue has, 
unfortunately, touched our lives. September 29th of last year 
was probably the best day of our lives in terms of having our 
new son born, Jonathan Cyrus; five weeks later, unfortunately, 
he was taken from us as a result of SIDS.
    This tragedy is very close to us, and we are here to help, 
to advise you that this research is critical. I will let my 
wife share with you our experience, and we will go from there.
    Ms. Anderson. Monday, November 4th started out as any other 
day, except that my five-year old was sick with a cold, so he 
stayed home with me and the baby. I had nursed the baby and put 
him down for his nap. When I went to check on him, me and my 
son found that he had stopped breathing.
    I had called 911 and frantically tried to revive him. He 
was taken to the hospital. The police and the ambulance came to 
the home, and I was not allowed to even call my husband yet 
until we got a pronouncement of death. So, I stayed alone with 
that until I called my husband. Once he arrived home, I just 
collapsed in his arms.
    Mr. Dickey. What was your son's name?
    Ms. Anderson. Jonathan Cyrus Anderson.
    Mr. Anderson. With that--getting a call, I am in the midst 
of work, focused as most business folks are, as you are right 
now, I broke down. And when this happens to families it is 
tragic because it is devastating. There is no way around it. 
And if it was not for the grace of God and our faith in God, we 
would not be sitting here today.
    Mr. Dickey. Amen.
    Mr. Anderson. With that said, a lot has been done as a 
result of past contributions from the Government----
    Mr. Dickey. Well, we are making progress, are not we?
    Mr. Anderson. Yes. In fact, I was just about to say that. A 
lot has been done, and in fact, because of the introduction of 
the back-to-sleep campaign, a few years back----
    Mr. Dickey. I do not have any problems doing that for 
myself. I just go back to sleep. [Laughter.]
    Go ahead.
    Mr. Anderson [continuing]. There has been a drop of 30 
percent from that program alone.
    Mr. Dickey. I thought it was 20, so that is excellent. I am 
sure sorry you all had to have your loss, though.
    Mr. Anderson. But it is not enough, because as we sit 
here--and the numbers, as I understand them, we are talking 
5,000 to 7,000 children per year dying.
    Mr. Dickey. We are still in that 70 percent, then?
    Mr. Anderson. Yes.
    Mr. Dickey. Okay.
    Mr. Anderson. As we talk, within this hour, another child 
is being lost, another family is being devastated as we were.
    So I just urge you to continue your support for the 
program.
    Mr. Dickey. Thank you.
    Ms. Anderson. I just wanted to close by saying that in 
memory of my son, Jonathan Cyrus Anderson, and on behalf of all 
SIDS parents who have suffered the loss of their children, and 
all expectant mothers who want to realize the hopes and dreams 
of the child they carry, I make an impassioned plea to Congress 
to continue funding SIDS research.
    I leave you with a quote from Schindler's List: ``Whoever 
saves one life saves the world entire.''
    Thank you for allowing us to share our testimony today.
    Mr. Dickey. Thank you for your contribution.
    Ms. Dickey. In the interest of time I think I am just going 
to talk to you briefly.
    I am Lori Dickey. I am here today as the mother of two 
sons. My first son died in 1994, also of SIDS. I had just gone 
back to work and I was coming to pick him up from the 
babysitter's, having dropped him off real quickly in the 
morning--I had an 8:00 o'clock meeting that I did not want to 
be late for--and I did not even tell him I loved him. I had no 
idea I would never see him again.
    Mr. Dickey. How old was he?
    Ms. Dickey. A hundred days, three months and nine days old.
    I came around the corner and I saw these police cars out in 
front of the house. I panicked and, God forgive me, I hoped it 
was someone else's child; but when I got out of the car and 
they were asking if I was Mrs. Dickey, I knew that there was 
something wrong with my son. I could hear the babysitter 
screaming incoherently inside the house. They took me to the 
hospital, and as I walked down the corridor Icould see the 
nurses and other attendants just scattering. No one really wanted to 
talk to me. Finally, they told me that my son had stopped breathing. 
After that, I found it a little difficult to breathe, and as long as I 
live I will never forget going into that room and seeing my tiny little 
baby, gray and still and cold and lifeless on that table.
    My husband and I, after we got over our grief, did a lot of 
work with the Arizona Affiliate of the SIDS Alliance. As was 
already mentioned, there has been a drop in rates due to the 
back-to-sleep campaign; but after we got our courage up to read 
the autopsy report, my son was sleeping on his back. He had 
absolutely no known risk factors at all, and yet he still died.
    I think the only way to answer that and to prevent any more 
SIDS deaths is to continue the research that has been started.
    Mr. Dickey. Thank you, ma'am.
    Ms. Dickey. Thank you very much.
    Mr. Dickey. Your testimony is riveting.
    [The prepared statement of Lori Dickey, John and Denise 
Anderson follows:]

[Pages 863 - 871--The official Committee record contains additional material here.]
                                ----------

                                          Thursday, April 17, 1997.

                                WITNESS

BARBARA D. BOYAN, AMERICAN ASSOCIATION FOR DENTAL RESEARCH

    Mr. Dickey. Next, we would like to hear from Dr. Barbara 
Boyan, a constituent of Congressman Bonilla; is that correct?
    Ms. Boyan. That is correct.
    Mr. Dickey. Just state who you are representing, if you 
will, please. You have five minutes.
    Ms. Boyan. Mr. Chairman and members of the committee, I am 
Dr. Barbara Boyan, and I am a Professor and Director of 
Orthopaedic Research, as well as being Director of an industry/
university cooperative research center at the University of 
Texas Health Science Center at San Antonio. I am here 
representing the American Association for Dental Research, and 
in support of the fiscal year 1998 for the National Institute 
of Dental Research, and the Agency for Health Care Policy and 
Research.
    As I start into my testimony, I would like to state that I 
am the proud recipient of three large grants from the NIH 
myself, and I am the mentor of two training grants. I think 
that speaks to what it is that I would like to share with you.
    Dr. Anderson has already talked about ``why dentistry,'' 
and now I would like to talk about ``why dental research.'' I 
think you heard clearly that I am not a professor in the Dental 
School; I am a professor in the Medical School. I am a 
Professor of Orthopaedics, which seems a very far distance away 
from dentistry, but it is not really. And that is really what 
dental research is all about.
    The modern era of dental research is about teeth; it is 
about oral health care; it is about prevention and treatment 
and periodontal disease, but I think more importantly, it is 
about the whole body. As we have learned more about dentistry, 
we understand that if people do not have good dentition, they 
do not have good nutrition; and if they do not have good 
nutrition, they do not have good health.
    Orthopaedics also has taken a lot from dentistry. The 
dental research that goes on in biomaterials is the best in the 
world. It is a place where we are number one, and no one would 
argue with that. It has led to a whole new industry in material 
science and in tissue engineering, about which the U.S. is 
number one. There is no other country that comes even close to 
where we stand in that field, both in research as well as in 
new technologies and new companies that are being formed and 
the new treatments for the future, the ``bionic people.''
    The use of titanium from the jet industry has come directly 
out of dentistry for dental implants, and gone on to form 
orthopaedic implants that are used for limb regeneration.
    Another way that the Dental Institute has used its money 
wisely has been in the forefront of technology transfer. Of the 
National Institutes of Health, the Dental Institute has taken a 
step forward to be the leader at the National Institutes of 
Health in technology transfer and the development of new 
technology. Some of that has grown naturally from the fact that 
dental research has led to new devices, but it also is an 
attitude at the Dental Research Institute that has led its 
leadership to inform people that not only do we take money from 
the Government to do research, but we are meant to give 
something back in the form of new technology. They have gone 
out of their way to encourage scientists to leverage the 
dollars that come from the Government with industry 
partnerships and partnerships with foundations so that this 
technology moves more quickly.
    I would think that if someone was to sit down and do 
numbers, they would probably find that more small companies 
have grown out of research funded from the National Institute 
of Dental Research than probably any of the other institutes, 
certainly per dollar.
    Mr. Dickey. You have 30 seconds.
    Ms. Boyan. So the dollars are spent wisely. What we are 
asking for is an 8.5 percent increase in those dollars, up to a 
budget that is a little over $212 million for the National 
Institute of Dental Research, and $160 million for the Agency 
for Health Care Policy and Research.
    The cost to the U.S. for dental care in 1995 alone was 
$45.8 billion. I would put forward to you that the $212 million 
that we are asking for is money well spent. It will be 
leveraged well, and the country will get its value for its 
dollar.
    Thank you.
    [The prepared statement of Barbara Boyan follows:]

[Pages 874 - 883--The official Committee record contains additional material here.]


    Mr. Dickey. Thank you, ma'am, for your good work.
    There are several votes and other activities that will be 
occurring on the floor of the House. We are now 10 minutes away 
from one; therefore we will stand in recess.

                           Afternoon Session

    Mrs. Northup [assuming chair]. This afternoon's session of 
the Subcommittee on Labor, Health and Human Services, and 
Education Appropriations will come to order.
    As we begin, I would like to just make a few comments. I 
want to remind the witnesses that two new provisions to the 
Rules of the House are in order. In addition to their written 
statements, non-Governmental witnesses must submit a curriculum 
vitae and a statement of Federal grant or contract funds they 
or the entity they represent have received. If you have any 
questions about the applicability of this provision or 
questions as to how it applies, please contact the subcommittee 
staff.
    We also have a very full hearing schedule. It is up to me 
to keep it on schedule. So each witness is asked to hold to the 
five minute provisions. I will tap on the microphone with 
thirty seconds left, not to interrupt you but to give you a 
chance to conclude your remarks and summarize any remaining 
statements you wish to make.

                              ----------                              

                                          Thursday, April 17, 1997.

                                WITNESS

THOMAS P. STOSSEL, M.D., THE AMERICAN SOCIETY OF HEMATOLOGY
    Mrs. Northup. Our first witness is Doctor Thomas Stossel, 
President of the American Society of Hematology. Mr. Stossel, 
welcome.
    Dr. Stossel. Thank you, Madam Chairman. I appreciate your 
time. I am President of the American Society of Hematology. Our 
society consists of over 8,000 members, which includes 
physicians who treat patients with blood diseases and also 
researchers who study the blood and its disorders. I am here 
this afternoon on behalf of the society to honor this 
subcommittee for its commitment to Federal support of 
biomedical research, and to endorse your wish that this support 
be flexible and broad.
    Hematologists are passionate about research. The reason is 
that they treat patients at the outer limits of medical 
knowledge, patients with fatal diseases like leukemia. They 
also know that what they can do for their patients, which is 
considerable, is based on the fruits of previous research and 
they also appreciate that this research has to be broad-based.
    Now, how do they know that? Well, for example, 
hematologists take care of patients with sickle cell anemia. As 
I am sure you know, sickle cell anemia is a complicated 
disorder, many complications, including painful episodes. 
Recently, we have acquired two new treatments for this 
disorder. One is a drug called hydroxyurea, which decreasesthe 
frequency of those painful attacks, and the other is bone marrow 
transplantation, which actually cures some patients with this disease. 
Both of these treatments were developed by hematologists researching 
cures for diseases unrelated to sickle cell anemia. This happens all 
the time in research and it is always unexpected.
    Hematologists are aware of the importance of broad-based 
research support for hematology, but we are also proud of the 
fact that our research has benefitted patients with other 
diseases. Another example. There is a substance called 
erythropoietin. Erythropoietin helps you to make red blood 
cells. If you do not have enough red blood cells, you are 
anemic. Erythropoietin was discovered by hematologists and is 
currently manufactured by the American biotechnology industry. 
The major clinical impact of erythropoietin has been for kidney 
disease, and patients with wrecked kidneys, because normally 
erythropoietin is made in the kidney. Prior to the availability 
of erythropoietin, patients with failed kidneys had to have 
multiple blood transfusions and they do not need it anymore.
    Speaking of blood transfusions, hematologists developed the 
technology of blood transfusion, and safe and effective blood 
transfusion cuts across all of medical care. In my written 
testimony, I have included other examples where hematology 
research has impacted on AIDS, on cardiovascular disease. You 
are running behind, so I would not speak any more about that.
    Let me simply say that it is really easy to get blood to do 
research on--you just stick somebody. For that reason, 
hematology research has contributed an enormous amount to 
understanding of how cells work. Cells are the fundamental 
units of life, so the way that cells grow, the way they move, 
the way they socialize, and the way they die can mean the 
difference between health and disease. For example, in 
hematology, the premature death of blood cells can cause a very 
serious disease called aplastic anemia. When it happens in the 
brain, by the same token, premature cell death is responsible 
for Alzheimer's disease and Parkinson's disease. So what you 
learn about one cell is applicable to another.
    This committee sees a lot of requests for specific disease 
budgets. What I hope with this testimony to do is to 
illustrate, with hematology as an example, that broad-based 
research support leads to specific treatments for specific 
diseases. We request that you continue to advocate for broad-
based support for biomedical research, and, particularly, we 
hope you will do everything you can to get a 9 percent increase 
for the National Institutes of Health for fiscal year 1998.
    I thank you for your time.
    Mrs. Northup. Thank you. I hope we can, too. Thank you for 
your testimony.
    [The prepared statement of Thomas Stossel and Robert Hadin 
follows:]

[Pages 886 - 895--The official Committee record contains additional material here.]
                                ----------

                                          Thursday, April 17, 1997.

                                WITNESS

MARGE DRUGAY, TRI-COUNCIL FOR NURSING

    Mrs. Northup. The next presenter is Marge Drugay. She is 
the Director of Older Adult Services with the Synergon Health 
System. I believe you are here representing the Council for 
Nursing, is that right?
    Ms. Drugay. Tri-Council of Nursing.
    Mrs. Northup. Okay. Welcome.
    Ms. Drugay. Good afternoon, Madam Chair. My name is Marge 
Drugay. I am a clinical nurse specialist and the Director of 
Older Adult Services for Synergon Health System in Oak Park, 
Illinois. I am here on behalf of the Tri-Council for Nursing, a 
body comprised of four major national nursing organizations--
the American Association of Colleges of Nursing, the American 
Nurses Association, the American Organization of Nurse 
Executives, and the National League for Nursing.
    In the midst of unprecedented changes in our health care 
delivery system and increasing complexity care, sound Federal 
funding for nursing education programs, including advanced 
practice nurses and clinical specialists and research, has 
never been more critical.
    Last year, this committee took a hard look at cost versus 
benefit of Federal support for these programs and provided an 
increase in funding. It remains abundantly clear that there 
continues to be a lack of primary care providers to address the 
ever-evolving needs of our citizens. Unfortunately, the 
President's fiscal year 1998 budget proposed a drastic cut in 
funding for these programs. We are appalled that the 
Administration could make such an irresponsible recommendation, 
especially in light of last year's overwhelming support and 
expressed need for primary care practitioners.
    Today, I am here on behalf of the Tri-Council for Nursing 
to share with you why such an extreme cut in funding for 
nursing is unsound budget strategy. Opportunities for health 
promotion and disease prevention abound across the lifespan. 
Advanced practice nurses are educated and ready to use every 
teachable moment in working with individuals in all cultures to 
avail themselves of those opportunities. My particular 
specialty is gerontology. We are poised on the edge of a 
demographic explosion in aging. The current population of 
adults 65 and over is approximately 33 million people. That 
number is expected to double by 2030 and we are not prepared 
with enough primary care providers to meet the demands of this 
population, especially the fastest growing subset of those who 
are over 85 years of age.
    Nursing research has shown us that prevention works. We are 
applying that research in clinical practice. In our particular 
program, advanced practice nurses have developed a wellness 
model geriatric health risk appraisal based on the principals 
of the Department of Health and Human Services Put Prevention 
Into Practice and Healthy People 2000 initiatives. In working 
with older adults, we use the age window between 55 and 65 to 
help adults assume personal responsibility for changing their 
lifestyle and improving their health status.
    In little more than a year, clinical nurse specialists have 
seen over 35 individuals in this innovative program, and 
positive health outcomes are emerging. These individuals now 
demonstrate lower serum cholesterol levels, have undertaken 
intentional weight loss, and improved their nutritional status. 
They have stopped smoking, increased their physical activity, 
and adopted preventive behaviors such as cancer screenings, 
immunizations, and using seatbelts. Our educational programs 
have reached over 2,000 older adults in 1996-1997. We welcome 
the opportunity for a site visit from any member of this 
subcommittee.
    This is only one example of the impact that advanced 
practice nursing, primary care, and nursing research can have 
in improving the health of our citizens. We appreciate the 
support that this subcommittee has consistently demonstrated 
for the Nurse Education Act programs. The Tri-Council 
recommends a fiscal year 1998 funding level of $65.3 million 
for these programs which have specific categories covering 
education, special projects, traineeships, and a loan repayment 
program for shortage area service.
    The Tri-Council also strongly supports funding for 
theNational Institute of Nursing Research at the National Institutes of 
Health. NINR provides research to improve nursing practice and the 
delivery of quality health care. This research is essential to the 
development of improvements in data and clinical effectiveness and 
patient outcomes, information which is vital to improving the quality 
of health care. The Tri-Council recommends a fiscal year 1998 
appropriation of $61 million, and would welcome funding at the NINR's 
Professional Judgement Recommendation of 9 percent over fiscal year 
1997.
    Madam Chair, the changing health care system creates a 
demand for nurses, particularly advanced practice nurses, 
throughout the continuum of care. Better access to primary care 
and preventive services will lessen the demand for costly acute 
care visits and interventions. Tri-Council believes that this 
support provided by the Nurse Education Act and NINR has been 
invaluable in providing programs that are essential to the 
nursing care needs of our citizens and should be continued. 
Thank you.
    [The prepared statement of Marge Drugay follows:]

[Pages 898 - 906--The official Committee record contains additional material here.]


    Mrs. Northup. Thank you very much.

                              ----------                              

                                          Thursday, April 17, 1997.

                                WITNESS

CAROLYN JOHNSON, VOICE FOR ADOPTION

    Mrs. Northup. Next, I want to call Carolyn Johnson, 
Director of the National Adoption Center. She is representing 
the Voice for Adoption.
    Ms. Johnson. Good afternoon. Thank you for the opportunity 
to testify on behalf of Voice for Adoption. We represent over 
30 national and State adoption organizations focused on U.S. 
children with special needs. We are asking for full funding for 
the Adoption Opportunities Act of $20 million.
    I am an adoptive parent of three children with special 
needs. I am the founder of the National Adoption Center, and 
serve on the Board of Voice for Adoption. We really have two 
goals; one is to find homes for the children, and the second is 
to support families once they adopt.
    According to Health and Human Services, there are 100,000 
children in our country that need to be adopted, about 27,000 
are legally free, and the remainder are going through the court 
process to have their parental rights terminated. They are 
school-aged, they are brothers and sisters who need to stay 
together, they are disabled children, and many of them have 
minority backgrounds.
    The Adoption Opportunities Act is the only Federal program 
that supports innovative services to get these children out of 
foster care. The dollars are well-spent. A study has shown us 
that for every child who is adopted, leaves foster care system, 
even if the family adopts with adoption assistance, $40,000 is 
saved.
    I would like to tell you about just a couple of the 
programs that are funded. The National Adoption Center operates 
the national adoption exchange. Last year, 35,000 families 
contacted us for adoption information. Based on our research, 
1,800 of those families will go on to adopt. We work 
extensively with Dave Thomas and the Wendy's Restaurants to 
raise public awareness. For the last three years, Maury Povich 
has featured children on his show who are waiting to be 
adopted. We have received 33,000 phone calls from those three 
shows. The first children to be adopted were five siblings from 
Kentucky and they went to the State of Florida.
    We also run an Internet sight called ``Faces of Adoption.'' 
It is an eighteen month old program. There are about 300 
children featured now, 21 of them have been placed. Stephen was 
the first; 15 years old, cerebral palsy, mental retardation, 
legal blindness. A family in Anchorage, Alaska went to the 
library, asked the librarian to help them get on the Internet, 
and he now is in the home and he is legally adopted. That grant 
of $300,000 saved $840,000 is foster care payments.
    We are very excited about the President's adoption 
initiative Adoption 2002, about the work that is occurring in 
the House and the Senate to reform adoption and foster care 
legislation. Without additional funding though for the 
innovative services, I think we might be right back where we 
started--more children free for adoption but not enough 
services to get them out and to support the families who take 
on these very, very challenging children. Thank you.
    [The prepared statement of Carolyn Johnson follows:]

[Pages 909 - 918--The official Committee record contains additional material here.]


    Mrs. Northup. Thank you. Two of my six children are high-
risk minority adopted children. They are beloved and have meant 
the world to our family.
    Ms. Johnson. I didn't know that.
    Mrs. Northup. So, I have great respect for what you do, and 
certainly hope this committee will do all it can to help your 
organization.
    Ms. Johnson. Thank you very much.
    Mrs. Northup. Thank you.

                              ----------                              

                                          Thursday, April 17, 1997.

                                WITNESS

ROBERT R. RICH, M.D., THE AMERICAN ASSOCIATION OF IMMUNOLOGISTS
    Mrs. Northup. Our next presenter is Doctor Robert Rich. He 
is the Chairman of the American Association of Immunologists. 
Welcome, Doctor Rich.
    Dr. Rich. Thank you very much, Madam Chairman. It is my 
pleasure to be here today on behalf of the American Association 
of Immunologists to talk to you about the 1998 appropriation 
for the National Institutes of Health.
    Two years ago, I testified before this subcommittee and at 
that time I told you that our peer-review system had broken 
down due to the inadequate support that the NIH was receiving, 
that success rates for grants had fallen to the 10 percentile 
level. Now, thanks to the generous support provided by this 
subcommittee, I can report to you happily that this peer-review 
system is again working the way it should, so that now we are 
funding excellent research and that most of the outstanding 
proposals are actually receiving the money necessary to carry 
them forward.
    With respect to the fiscal year 1998 budget, the American 
Association of Immunologists joins the biomedical research 
community in asking you to seriously consider the NIH Directors 
Professional Judgement Budget.
    There are several other issues, however, that I would also 
like to thank the subcommittee for, issues that we have called 
to its attention over the past couple of years and to which we 
have been gratified by its responses. Last year, we talked 
about the importance of development of a program of bridge 
funding to help investigators who are facing lapses in funding 
to more efficiently continue their research programs. In 
December of 1996, the NIH held a conference on this subject 
because of the interest of this subcommittee in the subject. I 
can tell you now that many of the institutes at NIH are, in 
fact, trying out different approaches to solve this essential 
problem.
    Secondly, the Chairman of the Committee, Mr. Porter, last 
year became interested in something that we had been concerned 
about; namely, the Small Business Innovation Research program, 
or SBIR. It has been our feeling that this program has been a 
generally inefficient use of NIH funds over the years. It was 
argued that the 2.5 percent set aside was a trivial amount that 
we should not be concerned with. I would remind the 
subcommittee that, in fact, that amount of money, which now is 
about $230 million a year, is greater than the budget of six of 
NIH Institutes, including the Institutes for Deafness, 
Alcoholism, and Genome Research, and in fact is approximately 
the same size as the National Institute of Arthritis, Muscular 
Skeletal, and Skin Diseases.
    Finally, Mr. Miller and Mr. Porter were both interested in 
our concerns with regard to duplicative and unnecessary rules 
and regulations that govern much of the research that is 
carried out, and called for the General Accounting Office 
tolook into this issue and look at the costs. The GAO did not disagree 
with our contention that in fact there may be hundreds of millions of 
dollars at stake here, but they eventually concluded, after studying 
the problem for some time, that it was simply too complicated for them 
to come to a conclusion about.
    I would submit to you, Madam Chairman, that would not have 
been the response of a private sector agency. We would 
respectfully suggest that you might consider looking into 
asking someone in the private sector to look into this issue 
again. One would not want to fund such a thing out of NIH 
research project grants. However, the Department of HHS has a 
program of administrative taps which now exceeds $90 million a 
year, and we believe that these administrative taps, which were 
intended originally for evaluation and assessment of the 
efficiency of their programs, would be a ready place to find 
the funding to really look into the waste of these hundreds of 
millions of dollars.
    Finally, the AAI is very concerned about one aspect of the 
Administration's proposal for fiscal year 1998, and that is the 
reduction in funding that they have proposed for the National 
Center for Research Resources (NCRR). The NCRR funds many 
critically important programs that support the infrastructure 
of science, such as the General Clinical Research program which 
supports clinical investigators across the country, the Shared 
Instrumentation Grant program which enables investigators 
throughout the country to get together to buy expensive 
instrumentation. There is one program, in particular, that I 
would like to point out, and that is the Biomedical Research 
Support program. This program remains authorized but, in fact, 
has not had an appropriation since fiscal year 1992. It is a 
program that provides block grants to medical centers that 
enable them, at the local level, to support new research 
programs, beginning investigators, and institutional bridge 
funding. We believe that in a time when managed care and cost 
competition have increasingly impinged upon the flexibility of 
medical centers, the BRSG program is of vital importance.
    Finally, I can tell you that the American Association of 
Immunologists is committed, with this committee, to seeing that 
you get not only the best, but the most research for every 
appropriated dollar. We thank you very much again for the 
generous support that you have provided.
    [The prepared statement of Robert Rich, M.D., follows:]

[Pages 921 - 932--The official Committee record contains additional material here.]


    Mrs. Northup. Thank you very much.

                              ----------                              

                                          Thursday, April 17, 1997.

                                WITNESS

JOSEPH PERKINS, AMERICAN ASSOCIATION OF RETIRED PERSONS

    Mrs. Northup. The next presenter is Joseph Perkins. He is 
the President-elect of AARP. Welcome, Mr. Perkins.
    Mr. Perkins. Good afternoon, Madam Chair. Yes, I do 
represent the American Association of Retired Persons. We want 
to thank you for this opportunity to comment on various 
programs which benefit older Americans, especially the low-
income and minority elderly.
    Of particular significance in this regard, the Older 
Americans Act and the Low-Income Home Energy Assistance 
Program, better known as LIHEAP. These initiatives play key 
roles in helping needy Americans preserve their dignity and 
independence and ability to stay within their own homes.
    Since its enactment over 30 years ago, the Older Americans 
Act has enabled millions of older citizens, especially those 
with disabilities, to remain independent and productive. Many 
of these individuals would have ended up in expensive 
institutional settings were it not for the home and community-
based services provided by the landmark legislation. At a 
minimum, the Association recommends that funding next year for 
Older Americans Act programs be maintained at current levels. 
To the extent additional resources become available, we urge 
that an inflation adjustment be provided.
    We also recommend that additional resources be made 
available to implement the Administration's proposed $4.7 
million increase in home delivered meals next year. The Elderly 
Meals Program has not only improved the nutrition of older 
persons, but it has also helped to decrease their social 
isolation as well. The Administration on Aging reports that in 
fiscal year 1995 more than 240 million meals were served under 
these programs.
    A critical part of the Older Americans Act, and one that is 
very partial to myself, is the Senior Community Service 
Employment Program, which we call SCSEP. As one of the national 
sponsors of this activity, the Association has first-hand 
knowledge regarding its effectiveness. SCSEP employment program 
has made a real difference in the lives of many unemployed low-
income older Americans by providing part-time jobs and useful 
community service. Many of the nutrition programs and other 
services for seniors as well as important programs serving the 
broader community, such as library services and day care 
centers that are dependent on work provided by older persons 
through the Senior Community Service Employment Program.
    Compared with younger workers, once unemployed, older 
workers tend to be jobless longer and are likely to earn less 
when, and if, they are hired. The minimum wage increase, which 
became effective last October represents the first one of its 
kind in more than five years. It has meant an awful lot to 
these older workers.
    With regard to the Low-Income Home Energy Assistance 
Program (LIHEAP), the LIHEAP, at a minimum, the Association 
supports the Administration's recommended funding levels. 
LIHEAP is important to all of its beneficiaries, but none more 
so than low-income older persons. Housing, health care, energy 
costs, all of these factors add to the stress of living on a 
tight budget. Many LIHEAP recipients are among the working poor 
or older persons who do not receive any other public 
assistance. For these individuals LIHEAP is a vital measure of 
last resort.
    Because they are more likely to live in older, less well-
insulated homes, older persons, particularly the elderly 
minority poor, have a heightened risk of hypothermia. Funding 
for LIHEAP has declined dramatically over the past several 
years. Only one out of five eligible elderly households is now 
able to receive some assistance. Any reduction below the 
Administration's recommended level would have a devastating 
impact on countless needy families for whom the program has 
become a lifeline.
    We want to thank you for this opportunity to present our 
views. We trust the recommendations in our complete statement 
will receive the subcommittee's favorable consideration.
    I thank you again, Madam Chair.
    [The prepared statement of Joseph Perkins follows:]

[Pages 935 - 944--The official Committee record contains additional material here.]


    Mrs. Northup. Thank you.

                              ----------                              

                                          Thursday, April 17, 1997.

                                WITNESS

MANUEL CERQUEIRA, M.D., THE AMERICAN COLLEGE OF CARDIOLOGY

    Mrs. Northup. Our next presenter is Doctor Manuel 
Cerqueira, Assistant Chief of Cardiology and Professor at the 
Georgetown University Medical Center. Doctor Cerqueira is here 
today in behalf of the American College of Cardiology.
    Dr. Cerqueira. Thank you very much, Madam Chairman. My name 
is Manuel Cerqueira. I am representing the American College of 
Cardiology, which is a 23-member professional medical society 
and teaching institution based in Bethesda. I am here to urge 
the continued support for the National Heart, Lung, and Blood 
Institution (NHLBI), the institution which is charged with 
enhancing the prevention, diagnosis, and treatment of 
cardiovascular disease.
    This institution has been the major impetus for the 
miraculous advances that have been made in the treatment as 
well as the prevention of cardiovascular disease. Many of the 
major health accomplishments in the past decade are a direct 
result of the efforts of the institute. As we approach the next 
century, our Nation's dedication toward cardiovascular research 
will not only inevitably be to more effective treatments and 
better technology, but towards an increased knowledge of the 
prevention of cardiovascular diseases.
    With the support of the NHLBI clinical trials, researchers 
are beginning to demonstrate the effectiveness of 
pharmaceuticals such as beta blockers and ace inhibitors in 
treating people with congestive heart failure. Congestive heart 
failure is a condition that effects about 4.8 million 
Americans. It is the fastest growing group within 
cardiovascular diseases. It is going to be very cost 
prohibitive in the future. The ability to treat these people 
effectively will decrease the total cost of medical care.
    In addition, the institute is investing in children's 
medical research. The institute is presently considering 
randomized controlled trials to document the efficiency as well 
as the safety of various therapeutics for cardiovascular 
diseases in children which, even though they are used commonly, 
have not been shown to prove effective. Many of the risk 
factors that we see in older Americans may have a role in 
children, but they may not. It is very important, before we 
start advocating lowering cholesterol, that we know that we are 
definitely going to have an effect.
    The NHLBI is also expanding its research priorities through 
increased clinical trials involving women and minorities.
    These accomplishments of the NHLBI are encouraging. The 
simple fact remains that, despite all of these improvements, 
cardiovascular disease remains the number one killer of men and 
women in the United States, currently accounting for 42 percent 
of all the deaths that occur in the United States. I can say, 
with the utmost confidence, that each of us here can personally 
relate to or identify with a relative, friend, or co-worker who 
has experienced the devastating realities of heart disease. 
There is approximately 55 million Americans, or 1 in 5 people 
in the population, who have some form of cardiovascular 
problem.
    It is for this reason that it is very important to continue 
to support the NHLBI for the 1998 fiscal year. The American 
College of Cardiology is very supportive of this effort.
    As a physician, I realize that we are operating in a much 
more belt-tightening health care environment. It is very 
important to put fiscal restraints on what we do as well as on 
the Federal budget. Nevertheless, medical research has to be 
viewed as an investment that is going to yield substantial 
returns. These returns are, in saved lives, as well as wiser 
use of health care expenditures. The total economic cost of 
heart disease in 1997 was $167 billion. In 1995, Medicare paid 
more than $29 billion for the treatment of heart disease. That 
is more than what Medicare paid for arthritis, cancer, kidney, 
and liver disease combined. So most of our Medicare dollars is 
going to cardiovascular problems.
    The question that a lot of people ask is that while the 
results of medical research may result in improved technology 
and innovation, they may also rise the cost of medical care. 
The declining rates of disability among the elderly proves that 
medical research can be cost-effective, and it has the 
potential to produce substantial Medicare as well as Medicaid 
savings. We really need to continue to do a fair amount of work 
in this area. Our risk factor modification program as well as 
our biomedical engineering, where we can actually take genes 
that will allow the body to produce medications, will end up 
reducing the cost of medical care. Blood pressure, diabetes, 
and the use of preventive measures in cardiology need to be 
effectively promoted. In the cafeteria, you are still selling 
cigarettes, and a lot of the Members are still taking the train 
between the Rayburn Building and the Capitol. It is much more 
effective to get people to walk. This kind of heightened 
awareness needs to be increased.
    For that reason, the American College of Cardiology is very 
supportive of the continued full funding of the NHLBI budget, 
because it really will result in cost savings for the American 
public. Thank you.
    [The prepared statement of Manuel Cerqueira, M.D., 
follows:]

[Pages 947 - 955--The official Committee record contains additional material here.]


    Mrs. Northup. Thank you very much, Doctor Cerqueira. I 
agree with you about the cigarettes. Unfortunately, the bells 
ring too fast for us to walk all the way to the floor. Thank 
you.
                              ----------                              

                                          Thursday, April 17, 1997.

                                WITNESS

PAUL E. STUBBS, AMERICAN DENTAL ASSOCIATION

    Mrs. Northup. Next, Doctor Paul Stubbs. He is with the 
American Dental Association (ADA). Welcome.
    Dr. Stubbs. Thank you, Madam Chairman. I am Doctor Paul 
Stubbs, Chairman of the Council on Access Prevention and their 
professional relations of the American Dental Association, and 
a practicing dentist in Austin, Texas. I represent 140,000 
members of the American Dental Association. On behalf of the 
American Dental Association, I would like to thank you for this 
opportunity to testify today.
    The association thanks Chairman Porter for his steadfast 
support last year for the Division of Oral Health within the 
Centers for Disease Control. The division is the primary 
Federal program responsible for dental disease prevention and 
assurance that dental care is provided in disease-free 
environment. The importance of these activities is obvious when 
realizing that in a single year over a half billion dental 
visits occur. Unfortunately, more than one person dies an hour 
from oral and pharyngeal cancer, and 17 percent of the children 
aged two to four already have dental decay. The ADA recommends 
a $2 million increase for the Division so that the Nation's 
dentists can continue to provide the highest standard of dental 
care in the world.
    The ADA would like to thank the committee for its support 
of funding for increased fluoridation efforts. We are very 
pleased to note that the Maternal and Child Health (MCH) Agency 
responded favorably to the committee's request last year and 
made funding available to the States with fluoridation rates 
below 25 percent. We hope that MCH will be able to do more in 
1998.
    The association also thanks Representative Bonilla for his 
leadership in securing funding for the Health Professions 
Program last year. While many Health Professions programs are 
important to dentists and to dental students, I will only 
highlight the General Dentistry Program in my oral statement.
    Dentists gain valuable clinical experience while in the 
program and, at the same time, they provide needed dental care 
to underserved populations and communities. In fact, the 
General Dentistry Program has been successful in meeting the 
Federal goal of increasing access to primary care, not only 
because it serves as a dental care safety net for the elderly, 
the disabled, and medically compromised, but because many 
graduates of the program locate their permanent practices in 
the underserved areas. The ADA recommends that $6 million be 
appropriated for this program in fiscal year 1998.
    The Ryan White HIV/AIDS Dental Reimbursement Program 
delivers vitally needed oral health care to people living with 
HIV and AIDS. In fiscal year 1996, 102 institutions 
participated, serving over 70,000 patients. Because of their 
impaired immune systems, people living with HIV/AIDS suffer 
ahigh incidence of oral disease which, if untreated, can lead to 
significant pain and oral infections resulting in difficulty in eating, 
taking medications, and subsequent excessive weight loss. Receiving a 
prompt diagnosis and appropriate treatment for these oral conditions is 
often difficult for individuals because dental services are neither 
reimbursed under Medicare nor seldom covered by Medicaid. This program 
can prevent such serious and expensive health complication. The 
association requests $9 million for the HIV/AIDS Dental Reimbursement 
Program.
    The National Institute of Dental Research supports more 
than 80 percent of the total dental research conducted in the 
Nation. The research has produced great breakthroughs which 
save Americans $4 billion in dental care each year. However, 
more research is needed. For example, the most common cranial 
facial defect is the cleft lip, affecting 1 in 500 births. 
Lifetime cost for the repair of clefts and treatment for 
associated speech and hearing and other problems are estimated 
to be $100,000 per patient. In addition, oral and related 
cancers affect 42,000 Americans annually, resulting in 9,000 
deaths each year.
    Future savings depends on current research like that being 
conducted at four new oral cancer research centers funded by 
NIDR. Continued adequate funding of NIDR is necessary and cost-
effective. Therefore, the ADA recommends that NIDR be funded at 
$212 million for the fiscal year 1998.
    Thank you, Madam Chairman. I appreciate your thoughtful 
consideration for these American Dental Association 
recommendations.
    [The prepared statement of Paul E. Stubbs follows:]

[Pages 958 - 966--The official Committee record contains additional material here.]


    Mrs. Northup. Thank you.

                              ----------                              

                                          Thursday, April 17, 1997.

                                WITNESS

STANLEY B. PECK, AMERICAN DENTAL HYGIENISTS' ASSOCIATION

    Mrs. Northup. Now we have Mr. Stanley Peck. He is the 
Executive Director of the American Dental Hygienists 
Association. Welcome, Mr. Peck.
    Mr. Peck. Thank you, Madam Chair. On behalf of the American 
Dental Hygienists' Association (ADHA), I want to thank you for 
the opportunity to testify before you and the committee today. 
I am Stanley Peck, ADHA's Executive Director.
    ADHA is the largest national organization representing the 
professional interests of the approximately 100,000 dental 
hygienists across the country. Dental hygienists feel strongly 
that good oral health is fundamental to total health.
    Oral diseases are still among the most common chronic 
health problems in the United States. Fifty percent of 
Americans do not receive regular oral health care. Clearly, the 
Nation's oral health must be further improved, and history 
shows that research at the National Institute of Dental 
Research (NIDR) has made significant advancements in this area.
    NIDR's work in dental research has not only resulted in 
better oral health for the Nation, it has also helped curb 
increases in oral health care costs. Americans save nearly $4 
billion annually in dental bills because of advances in dental 
research and an increased emphasis on preventive oral health 
care.
    Continued research at NIDR is critical to the future of 
prevention. Therefore, ADHA joins with other dental groups to 
recommend $213 million for NIDR.
    Because oral health is a vital part of total health, ADHA 
also urges this subcommittee and all Members of Congress, to 
seize every opportunity to increase access to cost-effective 
preventive oral health services such as those provided by 
dental hygienists.
    Further, any effort to revamp the present Medicaid and 
Medicare health care delivery systems or to advance children's 
health legislation should embody as one of its goals increased 
access to preventive oral health care services.
    With regard to Medicaid, for example, HHS reported last 
year that, despite the provision for oral health benefits under 
Medicaid EPSDT program, only 1 in 5 eligible Medicaid children 
actually received preventive oral health services. Clearly, we 
must do better. Dental hygienists can, and should, play a 
larger role in the delivery of oral health services to 
underserved populations, including Medicaid-eligible children.
    Accordingly, ADHA is pleased with the significant level of 
interest and commitment in this Congress to increase health 
insurance coverage among our Nation's 10 million uninsured 
children, including the 3 million children eligible for, but 
not receiving, Medicaid benefits. All Americans should have 
access to affordable quality health care services, including 
oral health care services.
    One way to increase access to oral health care is through 
the inclusion of dental sealants and fluoride in any definition 
of childhood immunizations. While research to develop a vaccine 
against tooth decay continues, we can today effectively guard 
against tooth decay, which is an infectious, transmissible 
disease, with the combined use of dental sealants and fluoride. 
Dental sealants and fluoride protect children against tooth 
decay just as vaccines immunize against certain medical 
diseases.
    ADHA would also like to lend its support to the Division of 
Oral Health within the Centers for Disease Control. The 
Division of Oral Health provides a national focus for the 
control and prevention of oral diseases such as dental caries, 
oral cancer, and periodontal disease.
    ADHA joins the Association of Schools of Allied Health 
Professions in supporting the important work of Title VII of 
the Public Health Service Act and recommends full funding for 
Allied Health Project Grants and Allied Health Advanced 
Training.
    ADHA also wishes to take this opportunity to support the 
Food and Drug Administration's regulations governing the sale 
and distribution of nicotine-containing cigarettes and 
smokeless tobacco products to children and adolescents. 
Allowing the FDA to regulate tobacco use and sales will help to 
prevent tobacco addiction, resulting morbidity, and mortality.
    With regard to the Department of Labor, ADHA believes that 
the Occupational Safety and Health Administration (OSHA) has an 
important role to play in promoting employee safety in the 
workplace. ADHA urges the subcommittee to appropriate monies 
such that OSHA will be able to promote employee safety in the 
workplace, including the dental hygiene workplace.
    In closing, the members of ADHA appreciate the important 
contributions this subcommittee has made in improving the 
quality and availability of oral health services throughout the 
country. ADHA is committed to working with this subcommittee 
and all Members of Congress to improve the Nation's oral 
health, a vital part of total health.
    Thank you for the opportunity to submit our views.
    [The prepared statement of Stanley Peck follows:]

[Pages 969 - 975--The official Committee record contains additional material here.]


    Mrs. Northup. Thank you very much.

                              ----------                              

                                          Thursday, April 17, 1997.

                                WITNESS

KIMBERLY KENNEY, CHRONIC FATIGUE AND IMMUNE DYSFUNCTION SYNDROME 
    ASSOCIATION

    Mrs. Northup. Next, we have Kimberly Kenney, the Executive 
Director of the Chronic Fatigue and Immune Dysfunction Syndrome 
Association. Welcome. I want to apologize on behalf of the 
Chairman. Due to illness, he is unable to be here this 
afternoon, but he did want to send his regards.
    Ms. Kenney. I understand. Thank you. I appreciate that.
    Thank you, Madam Chairman, for the opportunity to appear 
before the subcommittee today. My name is Kimberly Kenney. I am 
the Executive Director of the CFIDS Association of America. 
CFIDS stands for Chronic Fatigue and Immune Dysfunction 
Syndrome, also known as Chronic Fatigue Syndrome or CFS.
    CFIDS is an illness for which there is no known cause or 
cure. It is a serious, complex illness characterized by bone-
crushing fatigue, persistent flu-like symptoms, intractable 
pain, and profound cognitive deficits. These symptoms are often 
episodic and unpredictable in their severity and duration. 
CFIDS is frequently misdiagnosed because it closely resembles 
other disorders, including multiple sclerosis, lyme disease, 
lupus, and post-polio syndrome.
    Conservative estimates, based on the CDC definition of 
CFIDS, place the number of U.S. adults with CFIDS at 500,000. 
Children also get CFIDS, but adequate studies of the prevalence 
of pediatric CFIDS have not yet been conducted.
    I am here today to share with you both the good and the bad 
news about our fight against CFIDS. The good news is that we 
have made progress over the past year in research and in the 
effort to bring better coordination and accountability to the 
Government's response to CFIDS. The bad news is that this 
progress is not yet translated into advances that affect the 
individual patients who have watched their former healthy lives 
be erased by this devastating disease.
    Allow me to highlight five major accomplishments of the 
past year that underscore the value of continued Federal 
investment in these activities. Thanks to the direction 
provided by this committee, Mrs. Northup, last year Secretary 
Shalala signed the charter for the Chronic Fatigue Syndrome 
Coordinating Committee. Our hope is for better communication 
and information exchange and increased accountability. I am 
honored to report that Secretary Shalala has invited me to 
serve on this committee.
    On the scientific front, Doctor Robert Suhadolnik of Temple 
University has discovered, with rich funding from the NIH, a 
new enzyme in CFIDS patients that may lead to a diagnostic 
marker. Last summer, eight NIH institutes issued a joint 
program announcement on CFS outlining 32 areas of promising 
study. Last August, the CDC assembled a peer review group, of 
which I was one member. Its recommendations for future 
direction at CDC were highlighted in the appropriations 
conference report. And finally, on September 18, HHS will 
sponsor the first satellite program about CFIDS for health care 
providers.
    These achievements and others outlined, in my written 
testimony, have been facilitated through significant, though 
comparatively small, combined Federal investment of $13.7 
million.
    Despite these advances, there are five important areas in 
which progress has not occurred as we had hoped. For example, 
although funding for NIH increased last year by $819.6 million 
over fiscal year 1996, NIH funding for CFIDS has remained 
relatively level. However, we know that interest and activity 
in CFIDS research is growing. The CFIDS Association has 
experienced a four-fold increase in the number of dollars 
requested for projects deemed meritorious by our scientific 
advisory committee. The NIH program announcement will also 
generate more worthy proposals to NIH. Without adequate 
funding, researchers will be unable to pursue promising studies 
and current research efforts will lose momentum. This cannot be 
allowed to happen.
    The association requests that Congress appropriate an 
additional $10 million to NIH specifically for CFIDS research, 
most of which should be directed to extramural grants focused 
on promising areas of biomedical research. The association is 
concerned that the cross-institute partnership demonstrated by 
last year's program announcement noticeably did not include 
participation by the National Institute on Child Health and 
Human Development. We ask that the committee include report 
language requesting a special program announcement dedicated to 
study all facets of pediatric CFIDS.
    At CDC, promising research is not being published in a 
timely manner, and disturbing trends, such as increased rates 
of CFIDS among nurses, minority populations, and mothers and 
their children are not being addressed. The association 
requests an additional $5 million for CDC to carry out these 
important CFIDS-related projects.
    For patients who cannot continue working due to the 
physical and cognitive limitations imposed by CFIDS, the 
process of applying for Social Security disability benefits 
regularly takes two years to complete and is successful only 14 
percent of the time, half the national average for all other 
disabilities. Despite this committee's requests over the last 
three years, SSA has not yet established a CFIDS advisory 
committee to review the current medical standards and 
investigate training and information resource needs. We are 
encouraged by very recent meetings with the Office of 
Disability to examine obstacles to benefits for persons with 
CFIDS, and we ask the committee to express its strong support 
for continuation.
    Finally, Madam Chairman, what we hear most from people with 
CFIDS is that health care professionals are woefully uneducated 
about the disease. The association requests $500,000 for HRSA 
to conduct a national pilot project to educate health care 
providers about CFIDS through its area health education center 
program.
    On behalf of the association's 23,000 members, I wish to 
thank the committee for the support that has brought about much 
of the progress over the past year. Your commitment to the 
issue has been a beacon of hope for persons with CFIDS, and the 
CFIDS-related report language in the fiscal year 1997 
appropriations bill was greatly appreciated. More work remains 
to be done. With your continued interest and support, fiscal 
year 1998 will also provide much progress. Thank you very much.
    [The prepared statement of Kimberly Kenney follows.]

[Pages 979 - 982--The official Committee record contains additional material here.]


    Mrs. Northup. Thank you very much.
    That concludes the first section of testimony. We are going 
to recess until 2:00 when we begin the next round of testimony. 
Thank you very much for the participation.
    [Recess.]
    Mr. Wicker [assuming chair]. The hearing will come to 
order.
    And as we begin this afternoon's hearing, I want to remind 
witnesses of two new provisions in the rules of the House. In 
addition to their written statements, non-Governmental 
witnesses must submit a curriculum vitae and a statement of 
Federal grant or contract funds they or the entity they 
represent have received.
    If you have any questions concerning the applicability of 
these provisions or how to comply, please contact the 
subcommittee staff.
    We also have a very full schedule of witnesses and I have a 
very strict time keeper to my right. We will enforce the five 
minute rule very strictly.
    At this point, it is my pleasure to recognize my good 
friend and colleague, Ms. Pelosi, who will introduce our first 
witness.
    Ms. Pelosi. Thank you very much, Mr. Chairman. I appreciate 
that very much.
                              ----------                              

                                          Thursday, April 17, 1997.

                                WITNESS

ARTHUR J. AMMANN, M.D., AMERICAN FOUNDATION FOR AIDS RESEARCH

    Ms. Pelosi. Mr. Chairman, I am very pleased to introduce 
Dr. Arthur Ammann, President of the American Foundation for 
AIDS Research, to present his testimony here today. I have long 
respected Dr. Ammann's work. I first became acquainted with his 
work years ago when he was in my office with Elizabeth Glazer 
on the issue of pediatric AIDS. I know that he has made a very 
valuable contribution in that arena.
    He comes before us, though, as a pediatrician and an 
advocate for the research at the National Institutes of Health. 
I will not take any more time, because we are all eager to hear 
his testimony. Welcome, Dr. Ammann.
    Mr. Wicker. Dr. Ammann, we are delighted to have you, and 
you may now proceed.
    Dr. Ammann. Mr. Wicker and Ms. Pelosi, thank you very much.
    Members of the committee, I am delighted to appear before 
you. I am, as has been stated, Dr. Ammann, President of the 
American Foundation for AIDS Research. I am, by training, a 
pediatric immunologist, and prior to joining AmFAR I was 
Chairman of the Board of the Pediatric AIDS Foundation, 
directing their research program. I spent seven years at 
Genentech, a biotechnology company, performing research on an 
AIDS vaccine.
    I spent 14 years at the University of California performing 
clinical research. I might say that at notime in my career was 
I challenged so greatly and seemingly so impossibly than when we first 
recognized the emergency of a new disease and epidemic in the 1980s. 
The devastating impact of HIV as we now know that epidemic to be on 
individuals and their families, which I first saw in my very first 
patient, an infant diagnosed in 1982, continues to this day.
    I believe that because of the wise and sound investments in 
funding for NIH and the scientific community which NIH 
represents and most importantly, the progress that has been 
made, we now have treatments which can slow or reverse the 
devastating effects of this disease. This year in particular, 
we have seen a dramatic impact of anti-retroviral therapy on 
the course of HIV infection. We believe, many of us, that this 
will be a disease that will soon become a medically 
controllable condition.
    For me, one of the most remarkable advances, and one that 
Ms. Pelosi I think recognizes, because we have seen it in San 
Francisco as well, is the advance in treatment of HIV infected 
pregnant women. We have gone from 2,000 infected infants per 
year in 1994 to an estimated fewer than 500, a remarkable 
achievement and certainly a very dramatic advance in research.
    The benefits for AIDS research are evident far beyond the 
new therapies to treat HIV infected people. They extend to men, 
women, and children with other chronic to life threatening 
diseases. Basic and clinical research in AIDS, I believe, is 
providing insight into auto-immune, immune function, infectious 
diseases, cancerous diseases, the causes, the treatments, and 
impacting upon countless lives.
    Even the new drugs that we have for AIDS are now being 
studied extensively, as protease inhibitors, to look at 
osteoporosis and cardiovascular disease, to limit the damage 
that occurs there. I think importantly, the drugs that have 
been tested in the AIDS patients for opportunistic infection 
and proven to be efficacious are now widely used for other 
diseases where immunosuppression occurs: cancer and bone marrow 
transplant, renal transplant. So the benefit has extended way 
beyond the area of AIDS.
    However, given these advances, I am disturbed by recent 
suggestions that simple mathematical division could be used to 
determine research budgets for specific diseases. We must not 
fall prey to pitting one disease against another. As a 
pediatrician, I know that these mathematical formulas would 
adversely affect our Nation's children the most. This is the 
area that I have worked in for several decades.
    The numbers of children are small and the diseases will 
always be small, and through these formulas, they would not 
receive the funding that they need.
    Throughout the history of medicine, we have chosen to put 
emphasis on specific diseases, for example, polio, until we 
obtained a cure. Today, in spite of the discovery and new 
treatments for HIV, we are looking at a global epidemic that 
totally affects about 30 million individuals.
    So, I believe we cannot depart from any endeavor to control 
any infectious disease, including HIV, until we have either a 
cure or a vaccine. This was true for polio, it was true for 
smallpox, and it must be true for HIV-AIDS.
    This is why AmFAR stands with other advocates for NIH in 
support of a 9 percent increase for NIH in the upcoming fiscal 
year. This requested increase, which reflects the professional 
judgment of the NIH scientists, represents the wisest 
investment in the future health of American people.
    I think the multidisciplinary nature of AIDS requires that 
we look at what is being done across all institutes. We 
appreciate what this committee has done in supporting the 
Office of AIDS Research. I have seen in the last several weeks 
first-hand the interaction between different NIH institutes, 
investigators from different disciplines to solve the problem 
within AIDS. It is what the OAR should be doing and it is what 
the OAR is doing, and it is doing it very effectively.
    The OAR must have the resources and the budget authority 
necessary to lead the Federal research initiative in AIDS. We 
urge this committee in this year's bill to continue to support 
the OAR and to maintain and hopefully strengthen its authority.
    This committee has proven that it is committed to a 
vigorous Federal research effort. And for that, you have our 
sincere gratitude. We have made extraordinary progress. We see 
it around us, we see it in the health of our American people. 
We look forward to working with you and your staff to ensure 
that progress made against AIDS continues.
    Thank you again for this opportunity. And I would welcome 
any questions you might have.
    [The prepared statement of Arthur Ammann, M.D., follows:]

[Pages 986 - 993--The official Committee record contains additional material here.]


    Mr. Wicker. Thank you very much, Dr. Ammann.
    Does my colleague from California have some follow-up 
comments or questions?
    Ms. Pelosi. Mr. Chairman, thank you very much. I do.
    I want to once again thank Dr. Ammann for very valuable 
testimony, both what he presented here today and in his written 
statement for the record. I appreciate what you said about the 
consolidated OAR approach and the other statements that you 
have made about the importance of research at the NIH.
    In your written statement, Dr. Ammann, you talk about the 
moral imperative, and I agree, the moral imperative we have to 
take every step to lower the rate of HIV infection among drug 
users, their sexual partners and children. And that requires 
increasing the availability of drug treatment, increasing 
access to sterile needles through changes in Federal, State, 
and local laws, and the implementation of a needle exchange 
program. This is a very dramatic step.
    I know that there are some major scientific studies that 
have shown the success of these programs. Could you elaborate 
on them for us here?
    Dr. Ammann. The American Foundation for AIDS was one of the 
first institutions supporting active research in the benefits 
or detriments of needle exchange programs. We have found, and 
through the research of others, we now believe that there is a 
very strong scientific basis for supporting the use of clean 
needles as a method of reducing HIV transmission.
    We know that there have been some strong statements that 
have come out, Dr. Varmus, after looking at the scientific 
evidence, has supported this, feeling that this is something 
that is scientifically sound to do. The National Institutes of 
Health has had a consensus statement, the National Academy of 
Science, the AMA. There is very strong support from a 
scientific perspective.
    From my own personal view, I would like to see everything 
done that we can do to prevent HIV transmission. We know that 
one of the major sources of HIV in mothers that is transmitted 
to their infants through pregnancy is from HIV that comes from 
a contaminated needle. It is the needle that carries the virus. 
Providing a clean needle interrupts that transmission. And we 
believe it is a moral imperative to do something quickly about 
that.
    Ms. Pelosi. In those studies, is there any evidence that 
the needle exchange program has led to increased drug use by 
exchange clients or in the wider community?
    Dr. Ammann. The weight of the evidence is that there is no 
increase in drug use following a needle exchange program. Many 
of the people who enter those programs also enter counseling 
programs in terms of drug abuse itself.
    Ms. Pelosi. So there is a link between, an effective link 
to the drug treatment program?
    Dr. Ammann. Yes, and I think that is one of the additional 
points of the effectiveness. Certainly, to interrupt HIV is the 
primary reason, but it also provides a link for counseling and 
further therapy.
    It is a terrible sentence for an HIV infected individual, 
in terms of the number of drugs and the treatments that 
involve. For a drug addict, I think dealing with an HIV 
infection in addition to their problem is something that just 
is not acceptable.
    Ms. Pelosi. Thank you, Dr. Ammann, very much.
    Thank you, Mr. Chairman.
    Mr. Wicker. Thank you, Ms. Pelosi, and thank you, Dr. 
Ammann.
                              ----------                              

                                          Thursday, April 17, 1997.

                                WITNESS

JACK LAVERY, LUPUS FOUNDATION OF AMERICA
    Mr. Wicker. It is now my distinct privilege to introduce 
and recognize my colleague from Florida, Ms. Carrie Meek, a 
member of this committee, though not a member of this 
subcommittee, who is our guest today and will introduce our 
next witness.
    Ms. Meek. Thank you very much, Mr. Chairman. I want to 
thank this committee for everything they have done in the past 
for our fight against lupus. I think every year since I have 
been here, for three terms, I have come to this committee and 
they have listened. And many times, they have helped.
    And I want you to know, I appreciate it.
    As you know today, I have the privilege of introducing a 
very distinguished gentleman who is Chairman of the Board of 
the Lupus Foundation. As you know, we work very closely with 
the Lupus Foundation. It has been very responsible in terms of 
trying to help us advance the cause of a cure for lupus.
    We really want NIH to find a cure for lupus. I think that 
with the kind of funding that is necessary and the kind of 
public scrutiny, public help that we need, we can find it.
    We have before us today Mr. Lavery. Mr. Lavery is sort of a 
unique person, in that he does all of the work with the Board 
of the Lupus Foundation. Of course, he is a working person. He 
is Vice President, Senior Vice President of Merrill Lynch. And 
he has had a very distinguished career. He has split his time 
between his job, his work with Merrill Lynch, and he certainly 
is very much committed to finding a cure for lupus.
    Not only is he concerned about finding a cure, but being 
sure that doctors and researchers and the scientific community 
understands how to diagnose lupus. It is sort of a silent 
killer, Mr. Chairman. Before you know it, it is on you. And it 
debilitates the person. And it debilitates young people.
    I lost a sister to lupus. And of course, many young people 
and many middle aged, particularly women, get the lupus 
disease. It becomes very chronic, lasts for a very long time. 
So I am sure the victims of lupus across the country will be 
happy today that Mr. Lavery is here, and members of the Lupus 
Foundation, to come before the committee and make an appeal for 
funds for research and development in lupus.
    Thank you very much, Mr. Chairman.
    Mr. Wicker. Thank you, Ms. Meek.
    Mr. Lavery, we are delighted to have you today.
    Mr. Lavery. Thank you, Mr. Chairman. It is my pleasure to 
be here with you and the subcommittee. I want to thank and 
commend Representative Meek for not only her kind introduction, 
but more importantly, her great work with regard to the cause 
of lupus research.
    By way of introduction, as Representative Meek said, my 
name is Jack Lavery. My full time occupation is, as she said, 
is as a senior vice president of Merrill Lynch and Company. I 
am here today representing the roundly 1.4 to 2 million 
Americans that are affected by lupus. So I am here today really 
as the Chairman of the Board of the Lupus Foundation of 
America.
    Part of my reason for my involvement with lupus is that one 
of those 1.4 to 2 million Americans is my now 28 year-old 
daughter, who is affected by lupus. What is lupus? It is a 
chronic inflammatory disease where the body's immune system 
basically, the body turns against itself in effect. It is 
difficult to correctly diagnose, and frankly, at this stage, 
the treatments currently available can ultimately be as 
devastating in their consequences as the disease itself.
    What we do know is that 90 percent of the people who have 
lupus are female. Furthermore, the relative incidence of lupus 
is much greater among African-American females, Asian-American 
females, and Hispanic-American females. So I would submit that 
this truly is a diversity issue. As I look to try to raise the 
share of mind that lupus gets, not only here on Capitol Hill, 
but also with the corporate community, it is truly in 1997 a 
diversity issue of the first order.
    The Lupus Foundation of America, by background, is a 
membership organization of 91 odd chapters in pursuit of a 
cause and cure of lupus. The three-pronged goal of the Lupus 
Foundation is, simply stated: early detection, alleviation and 
ultimately eradication of the disease. Patient services, 
education and support of research are all key priorities. Our 
strategic plan has three tenets to it, national legislative 
advocacy, raising share of mind here on Capitol Hill through a 
grass roots effort as well, public awareness, and also resource 
development, i.e., fund raising.
    The key, though, is enhancing biomedical research in 
general. I therefore urge the members of this subcommittee to 
support funding for NIAMS at the $280 million level recommended 
by the Coalition of Patient Advocates for Skin Disease 
Research, of which the Lupus Foundation of America is a member.
    We also know that there is a genetic predisposition to 
lupus. My wife's mother had Crone's disease before she died. My 
wife has myasthenia gravis. My daughter had lupus. Those are 
all auto-immune diseases. As for that matter is MS, Grave's 
Disease, and several others.
    Lupus, I believe, is truly the prototypical auto-immune 
disease. In other words, supporting research in NIAMS at the 
level that I mentioned, and lupus research in particular, as 
Representative Meek is advocating, truly will help unlock the 
keys to MS, myasthenia gravis, Grave's, and Crone's, as 
examples. Only through further research will we really find 
ways to improve both the prognosis and the quality of life for 
people affected by lupus.
    I want to touch on my daughter. At age 13, she was 
diagnosed incorrectly with juvenile rheumatoid arthritis. At 
age 16, it was then incorrectly diagnosed as vasculitis, a non-
specific inflammation of the blood vessels. At age 19, finally, 
it manifested itself to be correctly diagnosed as systemic 
lupus erythematosus, the technical name of the disease.
    My daughter underwent the conventional treatment for lupus, 
steroids. Mr. Chairman, protracted use of steroids causes 
osteonecrosis, bone death. My own daughter has personally, as 
an example of lupus, has herself experienced during her college 
career five separate operations, four decompressions, drilling 
of her left knee, right knee, left hip, right hip and left 
elbow, all to try to create renewed vascularization, i.e., 
blood vessel growth, in those areas.
    It failed with regard to the hips. She has had since 
bilateral hip replacement. She graduated on time with her 
class, summa cum laude, from Ryder University, I'm delighted 
and proud to say. But lupus is in the kidneys.
    You saw on the news recently Oscar Robertson, the great 
basketball legend, just donated his kidney to his daughter in 
Cincinnati, age 32, with lupus nephritis. My daughter has lupus 
in the kidney, and the principal treatment for lupus in the 
kidney is cytoxin, a highly toxic, though effective in the 
kidney, highly toxic chemotherapy drug, the side effects of 
which can be lymphoma later in life, sterility or bladder 
cancer.
    Lupus patients truly undergo a significant challenge. What 
we are stressing at the Lupus Foundation of America is the need 
for collaboration between the public and private sector and the 
need for Federal dollars and truly maintaining a partnership 
between the public and private sector in lupus research.
    I want to stress the importance of the committee's support. 
I want to thank the committee on behalf of my daughter, Dena, 
and all lupus patients and their families. Finally, I want to 
ask you, no, better still, I really implore you, for lupus 
research funding and biomedical research funding in general. 
Even if it turns out to be too late for my daughter, it may 
help your daughters or possibly your sons.
    Thank you very much.
    [The prepared statement of Jack Lavery follows:]

[Pages 998 - 1003--The official Committee record contains additional material here.]


    Mr. Wicker. Thank you very much, Mr. Lavery.
    Ms. Meek?
    Ms. Meek. Mr. Chairman, as you know, we are requesting $50 
million for research funds for lupus, $50 million a year. We 
feel that is the smallest amount we could ask, and Mr. 
Chairman, we really need more. We felt that with the financial 
situation being as it is, we limited our request to $50 million 
a year.
    So we ask certainly your consideration of our request.
    Thank you, Mr. Chairman.
    Mr. Wicker. Thank you, Ms. Meek. Thank you so much.

                              ----------                              

                                        Thursday, April 17, 1997.  

                                WITNESS

TOM SHORTBULL, AMERICAN INDIAN HIGHER EDUCATION CONSORTIUM

    Mr. Wicker. Our next witness is Mr. Tom Shortbull, 
President of Board of Directors and President, Oglala Lakota 
College. We certainly appreciate your attendance today, and we 
are delighted to receive your testimony.
    Mr. Shortbull. Good afternoon, Mr. Chairman. My name is Tom 
Shortbull, as you said, and I am President of Oglala Lakota 
College. If you want to reference that in history, we were the 
tribe that defeated Custer at the Battle of the Little Big 
Horn.
    I represent not only my institution here today, but the 29 
other institutions of the American Indian Higher Education 
Consortium, which are principally tribal colleges. I am 
submitting a written statement for the record.
    My purpose for being here today is twofold. First, I am 
requesting your support for funding of vital, basic education, 
vocational education and student assistance programs that are 
critical to the survival and success of the tribal colleges. 
These requests are explained in detail in my written statement, 
and I refer you to it.
    Second, I am here, and this is the major focus of my 
presentation, is to express to you my concern as to how the 
welfare reform legislation will affect our tribal colleges. I 
think there will be a major, major impact on our reservations.
    For example, on my reservation, which is the Pine Ridge 
Reservation, and the Rosebud Reservation, which is the 
adjoining reservation to us, there are more than 5,000 people 
that are on AFDC. This constitutes 54 percent of the entire 
AFDC population in the State of South Dakota.
    That is readily understood when you look at our situation, 
where our county on the Pine Ridge Reservation has consistently 
been limited as the poorest county in the United States. 
Secondly, the Rosebud Reservation, for a number of years, was 
listed as the third poorest county in the United States.
    We have situations on our reservation where unemployment 
borders 60 to 80 percent. So we are going to see a major 
impact. In fact, I think we saw it this semester at our 
institution.
    Our institution, over the last five years, has hovered 
right around 1,100 students. And in this particular semester, 
we went up to 1,300 students, a 20 percent increase. We think, 
speculate that a substantial number of those students came into 
our institution because of the welfare reform legislation. 
There is that requirement that students must have 12 months of 
training to remain on welfare funding.
    In order to understand our funding needs, I would like to 
give you basically a brief history of the tribal college 
movement in this country. The fact of the matter is that we as 
tribal colleges and Indian people are really new to the arena 
of higher education. The reason for that is that when we were 
placed on reservations some 100 years ago, there was a 
mentality in this country that we were simply not smart enough 
to be professional people, therefore, we were sent off to trade 
schools.
    In the 1950s, there began to be a trickle of Indian people 
that went on to institutions of higher education. When I was a 
freshman in 1965, 20 of us started out as incoming freshmen. 
And only two of us graduated four years later. The situation 
that occurred then on our reservation is that our elders said, 
why can't we educate our own Indian people. That is what led to 
the creation of our college in 1971.
    We have done a fantastic job, Mr. Chairman. If you would 
have come to our reservation 50 years ago, you would have seen 
very few teachers or nurses in our hospitals and our school 
systems. Now if you come to our reservation, there are some 200 
teaching positions that are now filled by Indian people, and 86 
percent of those teachers are our graduates. Likewise with 
nurses, 95 percent of the nurses in our hospital are now Indian 
people, and 80 percent of those are our graduates.
    So we have done a fantastic job. In fact, in 1989, the 
Carnegie Foundation issued a report that said that we were one 
of the best kept secrets in Indian County. I think that is 
still true today. I do not think that many people realize the 
great work that we are doing.
    On May 19th, the Carnegie Foundation will issue another 
report to highlight the great work that we are continuing to do 
for Indian people in this country. I would ask you and the 
committee members to read that report to see the great things 
that we are doing.
    Now, in regard to our funding needs, Congress in 1978 
passed the Tribally-Controlled Community College Assistance Act 
that basically provides funding authorization of about $5,800 
per FTE students, as Indian people, at our institutions. 
Unfortunately, Congress has never appropriated the full $5,800. 
The highest we have gotten was about $3,500 about five years 
ago.
    As our enrollments increase and Congress does not 
appropriate any more money, our funding level has basically 
gone down rather than receiving an increase from Congress. We 
are at basically $2,900 right now. The President has seen that 
we do need this increase in funding. So in the President's 
request to Congress, he has requested a $3 million increase in 
our appropriation.
    What we are asking is, we feel it is important that 
Congress match what the President has done. So rather than 
having a $3 million increase, we feel that there should be a $6 
million increase.
    The bottom line, Mr. Chairman, is, will there be a legacy 
in this country that Congress failed to provide the necessary 
financial resources so that we can allow this initiative that 
Congress has of reforming the welfare system, can we assist you 
in that endeavor? So that is really the importance of my 
presentation.
    [The prepared statement of Tom Shortbull follows:]

[Pages 1007 - 1014--The official Committee record contains additional material here.]


    Mr. Wicker. Thank you very much, President Shortbull. We 
appreciate your attendance today.
    Mr. Shortbull. Thank you.
    [Clerk's note.--Excerpts to the requirements of House Rule 
XI was too extensive to print. Documents will be retained in 
Committee's files.]
                              ----------                              

                                          Thursday, April 17, 1997.

                                WITNESS

FELIX M. BARKER, AMERICAN OPTOMETRIC ASSOCIATION

    Mr. Wicker. Our next witness, and again, I will remind all 
witnesses of the five minute rule, is Dr. Felix M. Barker, 
representing the American Optometric Association.
    Dr. Barker, we are happy to have you.
    Dr. Barker. Thank you, Mr. Chairman and members of the 
committee.
    I am Dr. Felix Barker, and I am a Professor and Director of 
Research at the Pennsylvania College of Optometry. I am here 
representing over 30,000 doctors of optometry of the American 
Optometric Association.
    Since the National Eye Institute (NEI) was founded in 1968, 
optometrists have been active participants in projects managed 
by the Institute, the results of which have improved the 
quality of life for American citizens. We applaud the research 
achievements of the NEI, and endorse the funding of $362.7 
million for the fiscal year 1998 NEI budget as recommended by 
the National Advisory Eye Council and referred to as the 
citizen's budget proposal.
    Although we recognize the fiscal constraints currently 
facing the Congress, we ask the subcommittee to make funding 
for the National Eye Institute one of its highest priorities, 
by providing 9 percent increase over last year's budget. This 
increase is necessary to provide new treatments to combat 
blindness and improve vision.
    Vision and eye health problems are the second 
mostprevalent, chronic health care problem in the U.S., affecting more 
than 120 million people. Visual disorders reduce the educability of the 
child and hasten the loss of independence in the elderly. Visual 
disorders and disabilities impose billions of direct and indirect costs 
on our society each year.
    Finding a cure for vision disorders and eye diseases is 
essential to prevent consequent handicaps, especially in the 
children and elderly.
    Fear of blindness is second only to fear of cancer among 
our Nation's elderly. Vision and eye health problems increase 
in frequency and severity with age, often becoming a key reason 
for the abandonment of independent living among the elderly.
    Whatever their age, over 1 million Americans are legally 
blind. Over 12 million suffer from some form of irreversible 
visual impairment. Vision rehabilitation can help reduce the 
costs to these individuals and to society from lost wages and 
welfare payments. While NEI research support has made advances 
in developing effective optical aids to maximize remaining 
vision, there is much research that needs to be done.
    The NEI has conducted and support research which has 
resulted in improved diagnosis and treatment of many eye 
diseases. Age related macular degeneration, or AMD, is the most 
common cause of severe visual impairment in older Americans; 
1.7 million have decreased vision and 800,000 are legally blind 
from this disease.
    In the House and Senate report language that accompanied 
the National Eye Institute's fiscal year 1997 appropriations 
bill, the NEI was encouraged to do more research in AMD. The 
NEI currently provides support totalling $75 million for 
macular degeneration research, of which $16 million is targeted 
for AMD research.
    The NEI is exploring new AMD research opportunities 
relating to growth factors, tissue transplantation, gene 
discovery and therapeutics. In addition, the NEI's national eye 
health education program has held several workshops to plan a 
health education program proposal for low vision patients, 
including those with AMD, as one of the major target audiences.
    We also encourage substantial funding to continue research 
progress in the area of children's vision. Children are at high 
risk because of the impact of uncorrected vision handicaps on 
their educational and developmental progress. Although a number 
of studies have suggested the significant relationship between 
visual functioning and learning, a multi-center clinical trial 
is needed to evaluate treatment therapies.
    The NEI has recently funded a clinical trial planning grant 
to study screening tests to identify three year olds in need of 
vision care for amblyopia, which is called lazy eye, and 
strabismus, which is called crossed eyes, and significant 
refractive errors. The NEI budget should permit funding of 
grants at a high level in these areas.
    Since more than 120 million Americans wear glasses or 
require some form of visual correction, research in the cause 
and prevention of refractive errors and other visual 
dysfunction should continue. NEI has a remarkable record of 
scientific breakthroughs attributed to clinical trial research, 
beginning with the diabetic retinopathy study in the 1970s. 
More appropriate treatments for diabetic retinopathy have 
prevented catastrophic vision loss in severe diabetics, thus 
saving substantial public funds in the process.
    We support NEI's research in the eye complications of 
Acquired Immune Deficiency Syndrome, or AIDS. The results from 
NEI researchers demonstrating the effectiveness of drug therapy 
against the CMV retinitis in people with AIDS is very 
encouraging in the fight against this public health problem.
    We are grateful for the commitment Congress has 
demonstrated to the NEI and its mission. There is still much 
more to be done to preserve and enhance vision. We encourage 
this committee to continue its commitment to NEI and eye and 
vision research by providing the $362.7 million funding level 
recommended in the budget.
    Thank you again for the opportunity to present this 
testimony, Mr. Chairman.
    [The prepared statement of Felix Barker follows:]

[Pages 1017 - 1025--The official Committee record contains additional material here.]


    Mr. Wicker. Thank you very much, Dr. Barker.

                              ----------                              

                                          Thursday, April 17, 1997.

                                WITNESS

ALAN G. KRAUT, AMERICAN PSYCHOLOGICAL SOCIETY

    Mr. Wicker. Our next witness is Dr. Alan G. Kraut, 
representing the American Psychological Society.
    Dr. Kraut, we are glad to have you.
    Dr. Kraut. Well, I want to thank you for the opportunity to 
testify today on behalf of those NIH investigators who conduct 
research on the behavioral aspects of physical and mental 
health, including research on relationships between brain and 
behavior, on human development and aging, on mental illness, on 
drug abuse and alcohol addiction, chronic pain, disease 
prevention, heart disease, cancer and AIDS, among many other 
topics.
    Because of psychology's involvement in virtually every NIH 
institute, and our support of many interdisciplinary links, we 
are very grateful for your leadership in promoting the 
strongest possible budget for NIH. For fiscal year 1998, we 
support the 9 percent increase recommended by the Ad Hoc Group 
for Medical Research Funding, a coalition that we are a part 
of.
    I want to make just a couple of points today, but I ask 
that my complete written statement be placed in the record.
    I want to give you an update on something that this 
committee has been instrumental in promoting at NIH, and that 
is, support for younger NIH investigators. For the past few 
years, you have been giving crucial encouragement to a new NIH 
mechanism called B/START, the Behavioral Science Track Awards 
for Rapid Transition. This is a program of small grants, only 
25,000 or so, which provides seed money for young researchers 
to pursue their ideas.
    B/START is a model for ensuring a future generation of high 
quality researchers. This past year, B/START has been cited as 
exactly that in such national publications as Science Magazine, 
the Journal of NIH Research, and the Chronicle of Higher 
Education. It was first developed at the National Institute of 
Mental Health. B/START is now being used by the National 
Institutes on Drug Abuse and Aging to build a cadre of 
scientists.
    With your continued support, we believe that other 
institutes will follow. Ten years from now, I assure you that 
these young B/STARTers will be the senior researchers who are 
solving today's mysteries of health, and all of us will feel 
tremendous pride at having helped them in their careers.
    This committee also encouraged NIH to implement the 
research training recommendations of the National Academy of 
Sciences, which targeted behavioral science as one of five 
areas in which national research service awards should be 
increased. In response, the NIH Office of Behavioral and Social 
Science Research is setting aside $700,000 to supplement NRSA 
grants at individual institutes. That office, in conjunction 
with the National Institute of Mental Health, is also studying 
new programs designed to bring together the best of behavioral 
science with the best of biological science.
    These initiatives simply would not have happened without 
your involvement, and we are very grateful for your support. We 
hope you will continue to encourage NIH to build the Nation's 
capacity to address some of the most profound health issues 
facing us today.
    A related area that has been of interest to this committee 
over several years has been the status of behavioral science at 
the National Institute of Mental Health. I am pleased to report 
that NIMH is taking steps to strengthen and expand its research 
enterprise, including the development of two research plans to 
guide the future of research on mental illness. These plans 
represent important milestones at NIMH, particularly given the 
enormous toll that mental illnesses such as depression and 
schizophrenia represent.
    You mentioned both plans in the committee's last few 
reports, and we hope you will continue to encourage NIMH 
support in developing a timetable for implementing the 
recommendations of those plans.
    Let me turn now to the National Institute on Drug Abuse, 
where under the leadership of Director and Psychologist Alan 
Leshner, NIDA is expanding its investigations of drug abuse and 
addiction to look at the factors that place young peopleat risk 
for starting to take drugs, what factors lead some individuals to go on 
to become abusers, and what factors allow certain people to quit.
    We know that drug abuse and addiction can be reduced 
through this kind of research, but much more remains to be 
done. We fully support the Administration's request for NIDA, 
which includes an additional $30 million. Because of science's 
critical role in addressing the Nation's urgent drug problems, 
we ask the committee to support the proposed budget expansion 
for NIDA in whatever final form the NIH budget takes.
    The final area I want to talk about is the NIH Office of 
Behavioral and Social Sciences Research. I said earlier that 
behavioral research is conducted throughout NIH. For years, 
this committee, the National Academy of Sciences, the Institute 
of Medicine and many Surgeons General have expressed the 
importance of these areas by pressing NIH to increase the 
amount of behavioral research it supports, and to improve the 
fit between behavior and other areas of NIH support.
    Under Psychologist Norman Anderson, the Office of 
Behavioral and Social Sciences Research has taken the lead in 
this and has promoted many activities to strengthen behavioral 
research throughout NIH. The Office has been enormously 
effective in its few year history. We ask the committee to 
continue to recognize the important contributions of this 
Office toward improving health.
    Thank you.
    [The prepared statement of Alan Kraut follows:]

[Pages 1028 - 1038--The official Committee record contains additional material here.]


    Mr. Wicker. Thank you very, very much for your testimony.

                              ----------                              

                                          Thursday, April 17, 1997.

                                WITNESS

SANDRA KOWNACKI, AUTISM SOCIETY OF AMERICA

    Mr. Wicker. Our next witness is Sandra Kownacki, on behalf 
of the Autism Society of America.
    We are delighted to have you.
    Ms. Kownacki. Good afternoon. I am Sandra Kownacki, and I 
am President of the Autism Society of America.
    I appreciate the opportunity to be here today. It is an 
honor to present public witness testimony on behalf of the 
Autism Society of America.
    I am here not only as the President of the organization, 
but most importantly, because I have a child with autism. I 
have a 21 year old daughter, Amy, who has autism. She is 21 and 
she will be leaving the public education system this year 
because of her age.
    There is no typical manifestation with which an individual 
with autism can be classified, and my daughter is no exception. 
She was nine years old before she was ever diagnosed with 
autism. I knew from the very beginning that she had a problem. 
I have a masters degree in Special Education. I was not certain 
what it was.
    Even her pediatrician, who was head of pediatrics at St. 
Louis Children's Hospital, did not believe she had autism, 
because she was so social and so affectionate. If she were here 
with me today, she would be up there with you getting a drink 
of water, giving you a hug and a kiss.
    All children with autism are very different.
    What do we know about autism? We know that it is not a 
mental illness. Children with autism are not unruly kids with 
behavior problems. Many times, their behavior is merely a 
manifestation of them trying to communicate to you. 
Approximately half the children with autism are non-verbal, my 
daughter being one of them. A lot of times, different behaviors 
are the only thing they have to communicate something to you.
    Autism is not caused by bad parenting. In fact, no known 
factors in the psychological environment of a child have been 
shown to cause autism. Autism is considered developmental 
disability that typically appears during the first three years 
of life. It is believed to be a genetically based neurological 
disorder that affects more than 400,000 individuals in the 
United States, making it the third most prevalent disability, 
even more common than Downs Syndrome.
    Autism is four times more prevalent in boys than girls, and 
it knows no racial, ethnic or social boundaries. At the 
present, there is no prevention, treatment or cure for autism. 
The estimated health care costs associated with autism is 
greater than $13 billion a year.
    As I said before, there is no typical manifestation of 
autism. It is a spectrum disorder. That means that the symptoms 
and characteristics of autism can present themselves in a wide 
variety of combinations, from mild to severe. Although autism 
is defined by a certain set of behaviors, children and adults 
can exhibit any combination of behaviors in any degree of 
severity.
    Two children, both with the same diagnosis of autism, can 
act very differently from one another.
    The ASA agrees with Dr. Varmus' assessment that this is a 
promising time in research on autism. After many years of 
neglect and lack of sufficient funding, researchers at several 
institutes are now working to unlock the mysteries of this 
syndrome. A new era of autism research is underway.
    The National Institutes on Child Health and Human 
Development has taken the lead in coordinating NIH's autism 
research effort. NICHD joined with the National Institute on 
Deafness and Other Communication Disorders in issuing an RFA on 
the neurobiology and genetics of autism. The response to the 
RFA was so outstanding that the NIH Office of the Director gave 
NICHD additional funds to ensure that the most promising 
proposals could be funded.
    Because autism is such a complex disease, many institutes 
are engaged in research that might be beneficial in advancing 
our understanding. The NIH Autism Coordinating Committee, co-
chaired by the directors of the NICHD and the National 
Institutes of Mental Health, will ensure that the research is 
most effectively conducted throughout all the institutes 
currently engaged in autism research.
    As a result of these efforts, autism research is expanding 
in many areas, including genetics, molecular biology, 
neuropathology, the development of animal models and behavioral 
and cognitive neuroscience.
    As you have heard, basic and clinical research in this area 
is progressing. The scientific opportunities that exist are 
very encouraging. With additional support, we are optimistic 
that significant improvements can be made in the prevention and 
treatment of autism. This would require a 15 percent increase 
in the 1998 budget. As an absolute floor, we support the 
recommendations of the Ad Hoc Group for Medical Research 
Funding for a 9 percent increase in fiscal year 1998.
    [The prepared statement of Sandra Kownacki follows:]

[Pages 1041 - 1047--The official Committee record contains additional material here.]


    Mr. Wicker. Thank you very much. Your complete statement, 
of course, will be submitted for the record. We very much 
appreciate your bringing this matter to our attention.
    Ms. Kownacki. Thank you. Did you have any questions?
    Mr. Wicker. No. Thank you so much.
    Ms. Kownacki. Okay, thank you.

                              ----------                              

                                          Thursday, April 17, 1997.

                                WITNESS

MYLES P. CUNNINGHAM, M.D., AMERICAN CANCER SOCIETY

    Mr. Wicker. Our next witness is Dr. Myles Cunningham, 
representing the American Cancer Society.
    Dr. Cunningham, I note that you are the constituent of our 
Subcommittee Chairman, John Porter, who certainly wanted to be 
here today. But as you may know, he is ill. He has had a back 
problem for the last several days, and has been in very serious 
pain. He regrets very much that he is not able to be here today 
personally.
    Dr. Cunningham. Mr. Chairman, I am a surgical oncologist, 
and I am sorry I can not bring skills to the table that would 
bring Mr. Porter to the Chairman's table. I, too, regret his 
absence. But thank you, Mr. Wicker, our sincere thanks to you 
and members of your subcommittee for your past support of 
cancer prevention and control.
    I am here as President of the American Cancer Society, but 
really representing the 1.2 million Americans newly diagnosed 
with cancer every year. And I am here to tell you that your 
past investments in funding for the agencies and health is 
really paying off. Twenty-five years ago, our country declared 
war on cancer. Recent evidence has shown that there is new 
hope, but that we can and must do better.
    Last November, we, the American Cancer Society, announced 
for the first time, news of a sustained decline in overall 
death rates from cancer in the past five years. That is the 
first time in this century that has occurred.
    That decline that translates into approximately 18,000 
lives saved every year has come about by our steady, but 
unfortunately, often uncoordinated efforts to apply the 
knowledge that research has brought us in three areas: 
prevention, detection and improved treatments. In the next 20 
years, we can accelerate this trend significantly and perhaps 
cut the rate of cancer mortality to half its present.
    To do so, we must accelerate first our support of 
biomedical research, exploiting in particular our rapidly 
expanding understanding of molecular biology and genetics. 
Furthermore, we must ensure that clinical research does not 
become an orphan to managed care.
    The American Cancer Society fully supports the 
Congressional leadership's call for doubling the budget of the 
National Institute of Health, including the National Cancer 
Institute, over the next five years. We think you can make a 
down payment on this goal by ensuring that research takes full 
advantage of opportunities in basic, clinical, translation and 
behavioral areas and that all Federal agencies give priority to 
research and control programs for cancers that 
disproportionately affect minorities, especially prostate 
cancer in African-American males.
    Let me spend just a few moments on the issue of chronic 
disease, for cancer is, both in perception and fact, often a 
chronic disease. Chronic disease represents 60 percent of our 
Nation's total health and medical care costs, but commands only 
3 percent of the Nation's public health budget. Our cancer 
control agency in this country is usually identified as the 
Centers for Disease Control.
    The American Cancer Society strongly supports cancer 
prevention and control programs at CDC and other agencies. I 
would like to highlight just four areas for your attention.
    First, we must expand and enhance State-based surveillance 
efforts; that is, the cancer registries that are State-based. 
These measure the impact of treatment quality, they guide 
research priorities, and they determine the effectiveness of 
interventions to prevent and detect cancer. They are one of the 
few available tools we have to measure cancer treatment 
surveillance. And that is extremely important as we need to 
become increasingly focused on outcomes and outcomes research.
    We must maintain and expand the breast and cervical cancer 
control program, which has screened more than 1 million people 
to date, and has resulted in increasing numbers of women being 
diagnosed with early, rather than late, stages of breast and 
cervical cancer.
    Each year, over 900,000 cases of highly curable basal or 
squamous cell cancers are diagnosed, along with more than 
40,000 cases of a much more serious skin cancer, melanoma. A 
relatively small investment of $3 million will support a 
nationwide education and outreach program designed to teach sun 
safety that could greatly improve early detection of skin 
cancer.
    Finally, Mr. Chairman, I would ask you and the rest of your 
committee to step forward with me into the future, 50 years or 
perhaps just 20 years, which would be approximately the 100 
year anniversary of the American Cancer Society, and from that 
vantage point, look back on our contemporary society. That 
future society, hopefully more civilized than our own, will 
look back at this time and consider it truly barbaric.
    They will say, how did we permit, even encourage, 35 
million Americans to smoke? How could we have permitted almost 
one half million excess tobacco related preventable deaths to 
occur every year? Why did we not as a society stand trembling 
with rage as our children ages 10, 11 and 12 began to smoke? 
Why did we not recognize sooner that this country cannot afford 
the health and social burdens of tobacco consumption?
    I think your response should be to support efforts at the 
Federal level, at NCI, CDC, and all appropriate agencies to 
prevent tobacco use, particularly by youth, by expanding 
nationwide efforts aimed at decreasing youth access to these 
deadly tobacco products. The $15 million additional, that is 
above the $50 million or so we spend for this effort now, is 
really a pittance compared to the billions spent annually by 
tobacco companies to hook our children.
    The National Cancer Act mobilized this country's resources 
to fight cancer. Your continued investments in these areas that 
I have highlighted will allow us to accelerate the trend in 
cancer mortality reduction.
    Thank you again, Mr. Chairman, for hearing our appeal for 
necessary funding for cancer research, prevention and control.
    [The prepared statement of Myles Cunningham, M.D., 
follows:]

[Pages 1051 - 1064--The official Committee record contains additional material here.]


    Mr. Wicker. Thank you very, very much for your testimony.
    I apologize to all the witnesses for just having to move 
along so rapidly.
                              ----------                              

                                          Thursday, April 17, 1997.

                                WITNESS

MUSTAFA LOKHANDWALA, AMERICAN SOCIETY FOR PHARMACOLOGY AND EXPERIMENTAL 
    THERAPEUTICS

    Mr. Wicker. I believe our next witness is on behalf of the 
American Society for Pharmacology and Experimental 
Therapeutics, Dr. Mustafa Lokhandwala. We are glad to have you 
with us, Doctor.
    Mr. Lokhandwala. Thank you, Mr. Chairman.
    I am Mustafa Lokhandwala, a member of the American Society 
of Pharmacology and Experimental Therapeutics (ASPET). I also 
serve as Dean and Professor of Pharmacology at the University 
of Houston College of Pharmacy.
    Today, however, it is as a member of ASPET that I appear 
before you in support of the research budget of the National 
Institutes of Health.
    You have my written testimony in front of you, so I will 
simply highlight what is contained therein, to save time.
    Before I begin, I would like to thank the committee for 
this opportunity to testify. Pharmacological research is an 
area that impacts the constituents of every Congressional 
district in the Nation. I am delighted to say that 
pharmacological and other biomedical research that impacts 
public health has received bipartisan support, and we hope that 
such support will continue.
    Pharmacology is the science which explores the mechanisms 
by which drugs produce their effect on the human body. 
Pharmacologists are involved in the discovery of new drugs. 
ASPET has a membership of about 4,300 scientists involved in 
basic and clinical research, teaching, and administration 
throughout the United States. Pharmacologists are found in 
schools of medicine, veterinary, pharmacy and nursing, in 
private and government research laboratories, and in a wide 
variety of pharmaceutical and biotechnology companies. Our 
teaching efforts are a vital part of the formal education for 
the health care practitioners of tomorrow; our research efforts 
are crucial to the development of new medicines to fight old 
and new diseases and to improve human health.
    As a constituent society of the Federation of American 
Societies for Experimental Biology, also known to you as FASEB, 
our society supports the Federation's goal of a 9 percent 
increase over the fiscal year 1997 level in funding for the 
NIH. This recommendation is also consistent with the NIH's 
professional judgment estimate, which is based on a budget 
proposal sufficient to sustain funding for new research 
projects at a success rate above 30 percent.
    ASPET knows that members of this committee are aware that 
medical research is at the brink of discoveries that could 
affect the lives of millions of Americans through reduced 
health care costs, improved health and quality of life, and 
increased productivity. Please allow me to describe some recent 
examples of developments in my field that came about as a 
result of support provided through the NIH.
    For instance, diabetes. Eventually it may be possible for 
someone with diabetes simply to swallow a drug that turns on a 
modified insulin gene instead of injecting insulin as we do 
now. Long term studies of immunosuppressant drugs have yielded 
many developments, including a possible form of gene therapy, 
such that you could have genetically engineered T cells, which 
allow the production of a protein such as insulin to be turned 
on and off, depending upon the patient's need.
    HIV. Scientists have been able to design drugs known as 
protease inhibitors, which arrest the action of protease, an 
enzyme critical to the maturation of the AIDS virus. Advances 
in basic research methods, such as crystallography and 
structural biology, have made this approach to drug design 
possible.
    The concept of rational drug design may some day be applied 
to the development of drugs that target proteins produced by 
pathogens that infect humans, livestock and even plants.
    Cardiovascular disease. New thrombolytic agents have been 
developed which are capable of dissolving clots in coronary and 
cerebral arteries which are used for the treatment of heart 
attacks and stroke. These agents can be life saving in case of 
heart disease, and prevent severe disabilities resulting from 
stroke.
    These are only a few of the many advances made 
bypharmacological research, which in turn has improved our ability to 
treat patients suffering from various diseases.
    However, we must not rest on these achievements, but 
continue to invest in research as greater challenges face us in 
the 21st century. Although breakthroughs are being made in AIDS 
and cancer, the new century will bring new challenges, provided 
by development of resistance and tolerance to drug therapy, as 
well as by the aging population and the problems associated 
with drug therapy in the elderly.
    We are proud of our past. Our ongoing achievements show 
great promise. Your previous support has been responsible for 
this enormous progress. But America's biomedical research 
progress and leadership position are in jeopardy due to limited 
funding available in many critical areas of research.
    Members of ASPET realize that we are in times of tight 
fiscal constraints. They are also aware of the unlimited 
potential of their research. If increases in biomedical 
research are continued in future years, we will be able to 
capitalize on current therapeutic opportunities emerging from 
recombinant DNA techniques and sequencing the human genome.
    As you continue your deliberations throughout the 
appropriations process, ASPET urges you to continue the support 
you have provided NIH in recent years.
    On behalf of ASPET, I want to thank you for the opportunity 
to testify before this subcommittee. Thank you very much.
    [The prepared statement of Mustafa Lokhundwala, Ph.D., 
follows:]

[Pages 1067 - 1074--The official Committee record contains additional material here.]


    Mr. Wicker. Thank you very much, Doctor. And certainly we 
appreciate your testimony. I hope that we are able to find a 
way to continue providing adequate research funds.
    Mr. Lokhandwala. Thank you.
    Mr. Wicker. Thank you so much for what you told us today.

                              ----------                              

                                          Thursday, April 17, 1997.

                                WITNESS

PAUL HANLE, PHILADELPHIA ACADEMY OF NATURAL SCIENCES

    Mr. Wicker. Our next guest is Mr. Paul Hanle, a 
representative of the Philadelphia Academy of Natural Sciences. 
We are delighted to have you with us today.
    Mr. Hanle. Thank you, Mr. Chairman, and good afternoon.
    Several months ago, I was appointed the President and CEO 
of the Academy of Natural Sciences in Philadelphia. Prior to 
that appointment, I had the pleasure of spending 13 years at 
the National Air and Space Museum of the Smithsonian 
Institution. More recently, working as the Executive Director 
of the Maryland Science Center in Baltimore.
    So each experience has given me an opportunity to work with 
Congress in a variety of capacities. I do look forward to 
working with you on the Academy's behalf as well.
    When I arrived at the Academy, I requested a list of public 
grants and contracts, which also the committee of course 
requested for this testimony, and which is attached to it. This 
list, which is the Academy's public funding balance sheet, 
shows that the Academy grants are heavily weighted to basic and 
applied research, and less weighted to education and 
dissemination.
    I am pleased that the Academy is a significant grantee of 
the EPA and NOAA, National Science Foundation and even NIH. But 
organizations such as ourselves, it seems to me, have a 
responsibility not only to conduct quality research, but also 
to share with the public the results and value of that 
research.
    As a scientist, I understand the importance of moving 
forward with scientific research and discoveries. As a 
historian, I understand the importance of preserving the 
tangible evidence of science, which provides researchers an 
invaluable baseline against which we measure new discoveries.
    The Academy was founded in 1812, and it is considered one 
of the top 10 international research museums of natural 
history. We conduct research and provide public education 
programs that study the environment and its diverse species. 
Our research focuses on the studies of plants and animals, 
aquatic ecosystems as well on the United States East coast of 
the Nation and the World. And in fact, under the leadership of 
the National Medal of Science Recipient, Dr. Ruth Patrick, we 
have the Nation's longest running program of bio-monitoring 
U.S. waterways which began in 1948.
    Just to conclude this picture of the Academy, and then I 
will get to my point, we have 25 million plant, animal and 
fossil records spanning pre-history to 1997. Our mission is to 
expand the understanding of nature through discovery, and to 
inspire stewardship of the environment. This has provided a 
basis for us to move forward, and continues to motivate us to 
formulate new ideas and visions.
    As scientific research continues to become more 
specialized, it is very important to translate research 
findings to the public. While the Academy would never belittle 
textbook learning, we emphasize the importance of providing 
tangible examples through experience for students to comprehend 
theory. We hope that with this approach, in laboratory work, 
on-floor learning and field trips, students will see the 
benefit of science and perhaps will explore a career in the 
sciences.
    Women In Natural Sciences, which we call WINS, is one such 
program that I am here to talk about today, very quickly, which 
began in 1982. It is privately funded. It is a year-long 
natural sciences program offered for about 30 academically 
talented female students, but students who live in households 
where one or both parents are absent, and who demonstrate 
financial need. Each of the programs combines field trips and 
classroom study to provide a comprehensive basis for learning 
natural science. Through this program, the academy has reached 
out to women and invited them to participate in the study of 
science where the female gender has historically been under-
represented.
    The responses and outcomes from WINS graduates have been so 
positive that we have in fact expanded and instituted the WINS 
II program, which is a follow-on program comprised of the WINS 
graduates to encourage them to develop their careers in 
academic assistantships, science interns and museum explainer 
jobs, for example. We have measurable outcome of this program.
    With the assistance of the Department of Education, the 
Academy is looking to expand these current programs in fiscal 
year 1998, so that we can continue our outreach. The Academy 
requests the subcommittee's support for its efforts to work 
with individuals locally and nationally to increase the 
understanding of science. Specifically, we believe that WINS is 
a program which might be considered for funding with the 
Department of Education. I appear today to share with you these 
successes in science education and ask for your support as we 
work to expand upon these successes.
    Thank you for hearing my requests for your support.
    [The prepared statement of Paul Hanle follows:]

[Pages 1077 - 1089--The official Committee record contains additional material here.]


    Mr. Wicker. Thank you very, very much. We appreciate your 
testimony.
                              ----------                              

                                          Thursday, April 17, 1997.

                                WITNESS

ROSALIE LEWIS, DYSTONIA MEDICAL RESEARCH FOUNDATION
DANIEL LEWIS

    Mr. Wicker. Our next witness is Rosalie Lewis, representing 
the Dystonia Medical Research Foundation.
    Ms. Lewis, we are glad to have you.
    Ms. Lewis. Thank you, Mr. Chairman.
    I am Rosalie Lewis, Vice President of Development for the 
Dystonia Medical Research Foundation. It is my pleasure to 
present testimony to the subcommittee on behalf of the 
Foundation.
    First and foremost, I would like to thank this subcommittee 
for its generous funding of the National Institutes of Health 
in its fiscal year 1997 appropriations.
    In 1985, the first of the three of my four children was 
diagnosed with dystonia. For my sons and the estimated 300,000 
other children and adults, I would like to tell you a little 
something about dystonia and why we need your help so urgently.
    Dystonia is a neurological disorder, characterized by 
severe involuntary muscle contractions and sustained postures. 
There are several different types of dystonia, such as 
generalized dystonia, which afflicts many parts of the body, 
and usually begins in childhood. My sons Benjamin and Daniel 
have generalized dystonia.
    Focal dystonia, affecting one specific part of the body, my 
son Aaron has focal dystonia of the hand. Secondary dystonia, 
which is secondary to injury or other brain illness.
    There is no definitive test for dystonia, and many primary 
care doctors have never seen a case of it. This fact, coupled 
with its varied presentations, make it difficult to correctly 
diagnose. It is estimated that 85 percent of those suffering 
from dystonia are not diagnosed or have been misdiagnosed.
    Treatment for dystonia has been met with limited and 
variable success, with drug therapy, botulism toxin injections, 
and several types of surgery. My children with generalized 
dystonia take huge dosages of drugs, which makes cognition 
difficult. But with a choice between walking and not walking, 
one may choose to tolerate drug side effects. Ben receives 
injections of botulinum toxin, also known as botox, directly 
into the abductor muscles of his vocal cords. Luckily, he is 
experiencing moderate improvement.
    Since 1977, the Foundation has awarded over 275 medical 
research grants, totaling more than $14 million. Among the most 
significant results of this research was the discovery in 1989 
of the genetic marker for dystonia, and in 1995 of the gene for 
the dopa-responsive form of dystonia. We expect to have another 
gene announcement this June.
    All this could not have been done without the direct 
support of the NINDS. We are extremely appreciative of their 
support and recognition of the urgency of the research work 
that has to be done.
    I am here to request that this committee support the 9 
percent increase over the 1997 fiscal year budget.
    I would like to now introduce to you my son, Daniel, so 
that he can tell you first-hand how his life has been affected 
as a result of dystonia.
    Mr. Wicker. Very well, Daniel, we are glad to have you.
    Mr. Lewis. Thank you.
    Thank you for allowing me to be here. My name's Dan Lewis, 
and I am currently a sophomore in high school in a suburb of 
Rochester, New York. I have generalized dystonia.
    I did not always walk the way I do, nor write with the 
difficulty that I have. In fact, for the first seven years of 
my life, I was able to run, play soccer with my friends, throw 
a baseball with some accuracy and do what normal boys do.
    This all stopped one day when the muscles in my legs made 
walking difficult. Thinking I had sprained my ankle, I did not 
tell my parents about it, but I did not need to. They already 
saw what was happening to me. I was very frightened to realize 
that like my brothers, I also had developed dystonia.
    I am now 16 years old and have had to adjust my life to 
medicines and many changes. I currently take 30 pills a day, 
and have to deal with their side effects. I try hard to ignore 
the muscle pains in my legs, but sometimes the contractions in 
my foot are too intense to ignore.
    My left foot is now locked into an abnormal position 
because of these powerful involuntary muscle contractions. The 
dystonia has also made handwriting very difficult. Because of 
this, I have become ambidextrous, and often rely upon a word 
processor.
    I am here to speak for my brothers as well as myself. 
Besides my brothers, I have met many other young children and 
teenagers through the Foundation's young peoples group who are 
more severely affected by dystonia than I am. I worry for them. 
Where will we be in the years to come if better therapy is not 
soon discovered? Your help is desperately needed.
    My parents tell me there is good reason to hope, and I try 
to remain positive. I realize how difficult it is for you to 
fight on my behalf, but I urge you to not only remember me, but 
the several thousand other youths whose productive lives are 
also affected by this disease.
    Thank you for your help in the past, and for all that you 
will do in the future. Some day, I want to be able to tell my 
children and grandchildren they do not need to fear dystonia, 
because the cause is known and a cure is available.
    Thank you for this opportunity to present testimony to this 
subcommittee on behalf of the Dystonia Medical Research 
Foundation.
    [The prepared statement of Rosalie Lewis and Daniel Lewis 
follows:]

[Pages 1092 - 1098--The official Committee record contains additional material here.]


    Mr. Wicker. Thank you, Dan, and thank you, Ms. Lewis.
    I certainly believe that every member of this subcommittee 
shares that hope, and I am glad that the research of the NINDS 
has been helpful to some degree so far.
    Ms. Lewis. Thank you. We are looking forward to tremendous 
growth this year.
    Mr. Wicker. Thank you.

                              ----------                              

                                          Thursday, April 17, 1997.

                                WITNESS

JULIE SELLERS, ASSOCIATION FOR PROFESSIONALS IN INFECTION CONTROL AND 
    EPIDEMIOLOGY, INC.

    Mr. Wicker. Our next witness is Julie Sellers, Association 
for Professionals in Infection Control and Epidemiology, Inc.
    Ms. Sellers. Good afternoon.
    As you said, my name is Julie Sellers. I am a registered 
nurse and the Infection Control Coordinator for the Louisiana 
Health System in Lafayette, Louisiana. I have been in the 
health care field for 15 years. I am here today representing 
the Association for Professionals in Infection Control and 
Epidemiology, APIC, of which I have been a member for 13 years.
    APIC is a non-profit, multidisciplinary, international 
organization, representing more than 11,000 individual 
infection control professionals, including nurses, physicians 
and microbiologists. APIC members are committed to improving 
patient care, preventing adverse outcomes and to minimizing 
occupational exposure to biological hazards associated with the 
delivery of health care.
    APIC is a strong proponent of scientifically based programs 
and policy designed to protect and enhance the public health, 
such as those implemented by the Centers for Disease Control 
and Prevention. We are grateful for this opportunity to share 
our views on the fiscal year 1998 funding needs and priorities 
of the CDC. We are equally concerned, however, about regulation 
that is not science based, and is unnecessary and costly to 
implement, such as the proposed Occupational Safety and Health 
Administration's tuberculosis rule. I am here today to speak 
about both of these issues.
    I would like to start by thanking the committee for its 
longstanding support of the Centers for Disease Control and 
Prevention, particularly with regard to funding for infectious 
disease programs. Through its efforts and expertise, the CDC 
has been instrumental in national as well as international 
efforts to control the incidence and spread of infectious 
disease.
    Since the CDC is the primary entity responsible for 
safeguarding the public's health, it is imperative that the 
agency receive adequate resources to perform this monumental 
task. Chairman Porter has personally expressed enthusiastic 
support for the CDC's programs and accomplishments. He has 
voiced concern recently about the Administration's relatively 
modest overall funding request for the CDC of $2.316 billion. 
This is an increase of only \6/10\ths of 1 percent for fiscal 
year 1998.
    Considering the myriad public health challenges that are 
confronting health care workers on a daily basis, APIC concurs 
with Chairman Porter that this level of funding for the CDC's 
many programs is insufficient. APIC is an active member of the 
CDC Coalition, a Washington-based groupcomprised of more than 
100 organizations committed to enhancing public health. The CDC 
Coalition is recommending a total funding amount of $3 billion for the 
CDC.
    APIC agrees that this is a much more realistic funding 
level, and we hope you will take this into consideration during 
the appropriations process. APIC believes that the CDC needs 
more resources in order to adequately address infection 
prevention control at both the national and international 
levels. Infectious disease is the leading cause of death 
worldwide, and a significant cause of death here in the U.S. 
APIC members, many of whom work on the front lines in infection 
control and in public health capacities, recognize the urgent 
need for enhanced prevention measures as well as increased 
surveillance.
    In recent decades, significant progress has been made in 
the prevention and control of many infectious diseases. Today, 
though, our efforts are confounded. Despite our many 
accomplishments, changes in human behavior, alterations to the 
environment, deterioration of our public health infrastructure, 
widespread antibiotic usage and dramatic increases in 
international commerce and travel are factors contributing to 
the proliferation of drug resistance and new resurgent 
microorganisms.
    For this reason, APIC strongly supports, at a minimum, the 
Administration's request of $112 million for infectious disease 
programs. Approximately $15 million of this amount would go 
toward enhancing surveillance sites, strengthening 
epidemiological and laboratory response capabilities and 
supporting efforts to address emerging infectious diseases on a 
global level.
    We are hopeful, however, that the committee will recognize 
the absolute necessity of this program, and provide a higher 
level of funding. As you may be aware, international travel and 
commerce make it possible to transport diseases between states 
and countries in a matter of hours. Of particular concern to 
APIC is the safety of our Nation's food supply. We are strong 
supporters of the President's food safety initiative, and we 
urge Congress to fully appropriate the Administration's funding 
request of $10 million for this effort.
    This represents the minimum amount necessary to begin 
expanding CDC's program for the early detection of food-borne 
diseases and to improve outbreak investigation and response 
capabilities. Optimal success of this program will require the 
establishment of a fully funded and carefully coordinated 
public health infrastructure, including the modernization of 
our public health laboratories, and widespread implementation 
of an electronic communications network. This will likely 
continue to be a funding priority for the CDC in the years to 
come. We believe it is absolutely integral to the future 
success of our public health efforts.
    Thank you again for your support of the programs of the 
Centers for Disease Control and Prevention.
    Now on a different note. APIC strongly urges this committee 
to address the issue of dollars spent on unnecessary 
regulation, particularly health care regulations that are 
duplicative in nature and lacking any scientific validity. The 
Occupational Safety and Health Administration is preparing to 
issue a draft rule addressing tuberculosis infections in 
facilities such as hospitals, nursing homes, clinics and 
homeless shelters. The formulation of this rule is in response 
to a resurgence of TB in the U.S. that began in 1989, but has 
been under control since 1992.
    The CDC issued revised guidelines for the prevention and 
control of TB in 1994, and since that time, the incidence of TB 
has dropped to the lowest national level ever recorded. The CDC 
guidelines are practical, flexible, based on science, and 
proven to be effective, and have been implemented in health 
care facilities throughout this country.
    There is absolutely no need for a completely separate OSHA 
regulatory structure to address this very same issue. APIC 
believes that the CDC is far more knowledgeable than OSHA to 
handle TB prevention and control for both health care workers 
and consumers.
    Furthermore, the changing nature of infections diseases 
makes it imperative that guidance from any agency be flexible 
and continuously updated to reflect changing trends in the 
occurrence and distribution of diseases such as tuberculosis as 
well as their methods of control. The structure of the current 
CDC guideline provides us with this necessary flexibility. An 
OSHA regulatory standard would not.
    Clearly, there are significant funding implications 
associated with this rule, since it will include an inspection 
component that will be costly for OSHA to implement, a needless 
waste of taxpayer dollars. We sincerely urge you to question 
OSHA as to the rationale behind its rule.
    I thank you for your time and attention to these concerns.
    [The prepared statement of Julie Sellers follows:]

[Pages 1102 - 1110--The official Committee record contains additional material here.]


    Mr. Wicker. Thank you. Let me ask you a couple of 
questions.
    Ms. Sellers. Certainly.
    Mr. Wicker. I know we need to move along.
    This OSHA rule with regard to tuberculosis, is it in the 
comment stage?
    Ms. Sellers. We expect publication in the Federal Register 
within two or three months of the proposed rule. At that point, 
it will be in the comment stage.
    Mr. Wicker. I see. And do you know when the implementation 
is proposed to take effect?
    Ms. Sellers. No, sir, we do not have any indication of that 
from OSHA. We anticipate possibly towards the end of this year.
    Mr. Wicker. Has the CDC officially commented as to the 
improper scientific basis used by OSHA? Have they gone out on a 
limb that far?
    Ms. Sellers. I do not think they have, sir.
    Mr. Wicker. An agency battling an agency.
    Ms. Sellers. Yes, sir.
    Mr. Wicker. Well, you certainly have gotten my attention on 
that issue. At first blush, it stands to reason that CDC would 
know a little more about tuberculosis control than OSHA.
    Ms. Sellers. Certainly.
    Mr. Wicker. You mentioned antibiotic usage. Are you 
implying that over-use and improper use of antibiotics has 
created a tolerance?
    Ms. Sellers. Yes, sir.
    Mr. Wicker. And that has become a problem?
    Ms. Sellers. It has.
    Mr. Wicker. What do you advocate?
    Ms. Sellers. Education for clinicians who will prescribe, 
so that they have a more judicious and appropriate prescribing 
pattern for antibiotics.
    Mr. Wicker. Clinicians, nurse practitioners?
    Ms. Sellers. Clinicians and nurse practitioners, yes, sir.
    Mr. Wicker. Well, thank you for your testimony. And let me 
just note that CDC recently celebrated its 50th birthday. Just 
this week, a delegation from this subcommittee toured CDC in 
Atlanta, received a briefing. We learned that, although 
individual members of Congress have visited CDC, that this week 
was the first occasion for a Congressional delegation, a 
subcommittee, to tour CDC in an official capacity. We found it 
very, very educational, very helpful.
    We hope to work with you.
    Ms. Sellers. Thank you so much.
    Mr. Wicker. Thank you.
                              ----------                              

                                          Thursday, April 17, 1997.

                                WITNESS

LARRY T. HUGHES, AMERICAN THERAPEUTIC RECREATION ASSOCIATION
    Mr. Wicker. Is Larry Hughes here? Okay, Mr. Hughes is 
Director of the Maryland Wheelchair Sports Foundation, and is 
here representing the American Therapeutic Recreational 
Association. Mr. Hughes, we are glad to have you.
    Mr. Hughes. Thank you, Mr. Chairman. As you already 
mentioned, my name is Larry Hughes.
    Thank you for this opportunity to testify today on behalf 
of the American Therapeutic Recreation Association for fiscal 
year 1998 spending priorities. The American Therapeutic 
Recreation Association is the largest national association of 
recreation therapists, health care providers who use recreation 
as a modality for rehabilitation. I know first-hand the 
benefits that recreation therapy can bring to people with 
disabilities. My testimony today reflects this consumer 
perspective.
    After acquiring my disability during military service in 
Vietnam, I underwent extensive rehabilitation to become 
functional and independent. Since then, I have become a 
Paralympic world record holder and gold medal winner in the 
1996 Paralympic Games in Atlanta. I am the Executive Director 
of Maryland Wheelchair Athletic Promotions, Inc., and serve as 
Commissioner on the Maryland State Physical Fitness Council.
    My testimony focuses on four major programs of interest to 
American Therapeutic Recreation Association membership and 
people with disabilities. Three of which are funded under the 
Department of Education and one within the National Institutes 
of Health. American Therapeutic Recreation Association's 
interest includes programs in the following areas: National 
Institute for Disability and Rehabilitation Research; Office of 
Special Education Programs; Rehabilitation Service 
Administration; National Center for Medical Rehabilitation 
Research at the NIH.
    Our testimony speaks directly to the importance of funding 
for research, training and demonstration projects that advance 
the rehabilitation education of persons with disabilities. As a 
result of rehabilitation research and education programs that 
have been conducted, and the information of these programs that 
has been disseminated, individuals with disabilities have been 
able to maintain greater levels of independence, productivity 
and quality of life. Specifically, therapeutic recreation 
services has demonstrated significant benefits for individuals 
with disabilities.
    For example, as a result of physical active recreation 
therapy, individuals with spinal cord injuries have shown 
improved cardiovascular respiratory functioning, increased 
strength and endurance, a reduction in costly secondary health 
problems, such as skin ulcers and urinary tract infections. 
American Therapeutic Recreation Association urges this 
subcommittee to continue to provide sufficient funding in 
fiscal year 1998 for research, training and demonstration 
projects that improve and advance the rehabilitation education 
of Americans with disabilities.
    Specifically, we recommend that the subcommittee increase 
funding for special recreation demonstration projects, 
administered by the rehabilitation service administration. 
These projects are aimed at improving the mobility, 
independence, employment, community integration of people with 
disabilities. Without question, these projects are meeting 
their intended purposes and are producing positive outcomes. 
Even a modest funding increase would permit several additional 
demonstration projects to be initiated.
    Increased funding for the National Institute on 
Disabilities and Rehabilitation Research, in order to foster 
the current rehabilitation research and demonstration efforts. 
In the past, the National Institute on Disability and 
Rehabilitation Research has supported a research project aimed 
at determining the effects of recreation as a treatment 
modality in rehabilitation. Temple University's program in 
therapeutic recreation conducted several studies and 
demonstrated the role of recreation in achieving physical, 
psychological and social outcomes that are integral to 
improving and maintaining health status, emotional capacity and 
quality of life.
    One study demonstrates that an aerobic exercise program for 
adults with physical disabilities can have a significant 
positive impact on physical fitness, physical work capacity and 
depressive symptoms. A modest increase in the National 
Institute on Disabilities and Rehabilitation Research fiscal 
year 1998 budget will allow the agency to continue the success 
of previous studies in the important areas of disability and 
rehabilitation research.
    Maintain funding for personal preparation, leadership 
training and research under the Office of Special Education 
Programs. The Office of Special Education Programs has been 
very successful in developing educational programs for 
individuals with disabilities. It has also excelled in 
training, education, related services personnel. Many American 
Therapeutic Recreation Association members have benefitted from 
the Office of Special Education Programs projects that have 
provided specialized training to therapeutic recreation 
students in order to develop specialized skills necessary to 
work with individuals with complex disabilities.
    Significantly, increased funding for medical rehabilitation 
research at the National Center for Medical Rehabilitation 
Research at the National Health Institutes--excuse me one 
second. Because this is very touching, and it impacts myself. 
We are very well aware of Chairman Porter's leadership and 
commitment, and that of the subcommittee, to the National 
Health Institute, in general, the National Center for Medical 
Rehabilitation Research, in particular.
    We ask you to continue your commitment to medical 
rehabilitation research this year. While the annual costs of 
disability in this country is $169.4 billion according to 1985 
data, NIH's level of funding for rehabilitation research was 
only $114.4 million in fiscal year 1994. According to 
information released by the NIH, these figures indicate that 
this Nation's investment in rehabilitation research is less 
than seven hundredths of 1 percent of the annual cost of 
disabilities in America. The fact that $11 can be saved for 
every $1 spent for rehabilitation testifies to its cost 
effectiveness and highlights the fact that rehabilitation 
research and development are vastly underfunded at the Federal 
level.
    The American Therapeutic Recreation Association stands 
ready to share information about the role of recreational 
therapy, interventions and improving the lives of individuals 
who contend with illnesses and disabilities, and to demonstrate 
how therapeutic recreation is a cost effective service within 
the total fabric of health care, rehabilitation and education 
services.
    I would like to thank you for this opportunity to testify. 
And I hope that you can continue making a difference.
    [Clerk's note.--Information required pursuant to clause 
2(g)(4) of Rule XI of the Rules of the House of Representatives 
was not received from this witness or from an entity 
represented by this witness]
    [The prepared statement of Larry Hughes follows:]

[Pages 1115 - 1120--The official Committee record contains additional material here.]


    Mr. Wicker. Thank you very much, Mr. Hughes. We appreciate 
your fine testimony.
    And you can be assured that we will pass along your kind 
comments about the Chairman.
    Mr. Hughes. Okay, thank you.

                              ----------                              

                                          Thursday, April 17, 1997.

                                WITNESS

CARL A. OLSSON, M.D., AMERICAN UROLOGICAL ASSOCIATION

    Mr. Wicker. We are expecting a vote some time soon, and so 
I would remind the remaining witnesses of the five minute rule.
    On behalf of the American Urological Association, we now 
have Dr. Carl A. Olsson, of Columbia University. Dr. Olsson, 
welcome to the subcommittee.
    Dr. Olsson. Thank you, Mr. Wicker, members of the 
subcommittee. You know who I am, so I would not repeat it.
    I am here to represent the views of the American Urological 
Association on fiscal year 1998 funding for urology research at 
the NIH. I especially want to thank you and members of the 
subcommittee for your continued strong support of the NIH. 
Obviously, as you have already heard this afternoon, we have 
got to maintain as a high national priority our commitment to 
the country's biomedical research infrastructure.
    My statement submitted for the record details all of our 
recommendations. I would just like to use my time today to 
highlight some key points. The impact of urologic disease is 
much larger than generally thought. People of all ages and 
races and both sexes suffer from urologic diseases. The annual 
health care costs of these are estimated to be something in the 
order of $50 billion a year in the U.S.
    For example, one-third of all new cancers in the U.S. this 
year will be urologic. In males, it is going to be one half.
    Twelve million men over the age of 50 suffer from symptoms 
of BPH, benign prostatic enlargement, and 18 percent of that 
number will require treatment each year. Incontinence is a huge 
problem, particularly in the female population, and in our 
graying society. Many elderly women enter nursing homes for 
that reason alone.
    Research into urologic cancers such as prostate, kidney and 
bladder cancer are conducted through the National Cancer 
Institute, as you know. Except for the skin cancers, the most 
common diagnosed cancer in the United States is prostate 
cancer, with over 330,000 new cases projected for this year by 
the American Cancer Society. This disease, as you have already 
heard this afternoon, does affected minorities 
disproportionately, with the incidence and death rates twice as 
high in the African-American man than in the white population.
    Despite the fact that the death rate from breast and 
prostate cancer are nearly equal, the disparities in research 
funding are extreme. We urge the subcommittee to allocate $100 
million for research in prostate cancer in fiscal year 1998. I 
have just come from an annual meeting of the AUA. And based on 
the support you have already provided, we are seeing huge new 
opportunities in the molecular science of prostate cancer. If 
we can expand the funds available at NCI for prostate cancer, I 
believe that rapid scientific progress and treatment progress 
will follow.
    We believe that NCI should be instructed to try to 
establish parity in funding between breast and prostate cancer 
as soon as possible, not at the cost of breast cancer, but to 
the benefit of prostate cancer, with new funds. Based on the 
news at our annual meeting, I am confident that the money would 
be well invested and would provide rapid results in terms of 
improved detection and treatment of this disease.
    The basic science program in urology is housed at the 
NIDDK. Here again, despite support from Congress, research 
resources are insufficient to meet the challenges these 
diseases present. Despite your support, for example, of a NIDDK 
budget increase last year, spending at NIDDK declined this 
year. Work to unlock the secrets of prostatic disease proceeds 
very slowly. If we could increase the funding for basic 
prostate research by $20 million at NIDDK, we could make 
significant progress in our understanding of prostate cancer, 
BPH and prostatitis.
    I would like to move on now to women's urology. Funding for 
the many diseases in urology that affect women, such as 
interstitial cystitis, incontinence and urinary tract infection 
is woefully inadequate to address the embarrassment, pain and 
suffering these conditions cause millions of women. For 
example, the problem of urinary incontinence, which affects 
women far more than men, is one costing the U.S. some $10 
billion to $12 billion annually, not on high tech medical 
therapy, but on diapers and custodial care.
    In addition to the previous commitments we have made to 
interstitial cystitis research, we urge that $20 million be 
directed towards women's urology research initiatives at NIDDK.
    We can report progress on one front, and that is, the 
structure of the study sections for urology. For too long, 
urology was under-represented on the study sections. And 
urology grant applications suffered as a consequence. NIH has 
finally created a special emphasis panel in urology, and we 
believe this mechanism is working to assure that grant 
applications in urology are actually reviewed by scientists who 
have some experience in the field.
    We certainly appreciate your past support on this point. 
Our collective persistence has finally paid off.
    That completes my testimony, Mr. Wicker. I would be happy 
to answer any questions you have.
    [The prepared statement of Carl Olsson, M.D., follows:]

[Pages 1123 - 1131--The official Committee record contains additional material here.]


    Mr. Wicker. We thank you so much. Your testimony will be 
received, and as I explained earlier, we are under the gun.
    Dr. Olsson. I know that. Thank you.
    Mr. Wicker. So we will move along. Thank you so much for 
being with us.
                              ----------                              

                                          Thursday, April 17, 1997.

                                WITNESS

DAISY STEWART, AMERICAN VOCATIONAL ASSOCIATION

    Mr. Wicker. Next we have Daisy Stewart, representing the 
American Vocational Association. Ms. Stewart, welcome.
    Ms. Stewart. Good afternoon, Mr. Chairman. I am Daisy 
Stewart, President of the American Vocational Association and 
Associate Professor of Vocational and Technical Association at 
Virginia Tech University. On behalf of AVA, I want to thank you 
for inviting me to be here today.
    Vocational and technical education is all about 
opportunities; opportunities to learn academic and technical 
skills, and to explore different career options. Today's 
programs enable secondary students to pursue further education, 
seek additional occupational skill development, or move 
directly into careers. They provide adults, including college 
graduates, with the opportunity to acquire technical and career 
skills.
    The most important feature of vocational technical 
education is that it is relevant. It helps students understand 
that academic skills are important. And it provides different 
ways to learn them. For many at-risk students, these programs 
provide the motivation to stay in school. They show students 
how their academic skills are applied in real life situations 
and the world of work.
    Federal support for vocational technical education improves 
programs by increasing the academic course content, updating 
curriculum, improving teacher skills, acquiring state of the 
art equipment, and providing career guidance. It also supports 
partnerships with business and labor, ensuring that programs 
remain up to date, establish links for work based learning, and 
secure greater community involvement. All funding is targeted 
to improvement efforts, not the status quo.
    For example, Federal funds helped Chicago's Calumet High 
School to revise its hotel and restaurant management curriculum 
to fully integrate it with academic subjects and to include 
work based learning. The City College of Chicago upgraded its 
curriculum, using Perkins basic state grant and tech prep 
funding so students receiving nursing certifications and 
degrees are assured that their credentials are recognized 
throughout the country.
    I know that many members of Congress are concerned about 
education operating in a vacuum. Without input from business 
and labor, it is impossible for educators to develop effective 
programs. Vocational technical education is truly a leader in 
using business expertise. And business leaders see a large 
return on their investment of time and resources through a 
highly skilled and highly educated work force.
    In Illinois, the Northwest Suburban Education To Careers 
Partnership used Federal funds to help create a collaboration 
between business and education. This agreement involves 12 high 
schools, William Rainey Harper College, Roosevelt University, 
the Illinois Restaurant Association and 32 businesses to 
develop a food service management program. While students are 
allowed to end their studies upon graduation from high school 
with a certificate of mastery, all of the students have chosen 
to continue their education at the post-secondary level.
    States like Wisconsin use Federal funds to keep programs 
current with employers needs. Wisconsin Indian Head Technical 
College has more than 700 employers actively involved with its 
programs, and has a placement rate exceeding 90 percent.
    With the help of effective business and industry 
partnerships, programs at Wisconsin's North Central Technical 
College have an overall placement rate for graduates of 96 
percent with 21 programs placing 100 percent of their 
graduates.
    At the national level, AVA has created a partnership with 
more than 40 corporate partners to make sure that vocational 
technical education is in tune with employers' and students' 
needs. Companies like America Online, Boeing, BellSouth, 
General Motors and General Mills are joining with small 
business leaders like Ohio's Clark-Theders Insurance Group as 
well as one of the Nation's first school to careers 
universities, the Florida Gulf Coast University, to work with 
AVA to improve vocational technical education.
    This field of education is unique in its approach. It is 
the only area of education that addresses the academic needs of 
students, while also giving them the technical skills, career 
exploration opportunities and employability skills needed to 
launch successful careers and pursue further education. Many of 
today's students will not pursue or will not complete a 
traditional four-year college program. To correspond with the 
demands of the labor market, they will need technical skills 
and some post-secondary education. But only about 20 percent of 
the jobs will require a bachelor's degree.
    Therefore, it is critical that Congress provide an 
additional 10 percent investment for vocational technical 
education and school to work programs.
    In addition, because Federal assistance enables millions of 
students to achieve the dream of post-secondary education, we 
request that the Pell Grant maximum award be increased to 
$3,000.
    In closing, I want to emphasize that vocational technical 
education is rising to meet the diverse goals of our students, 
as well as the needs of the business community. But a strong 
Federal investment is necessary for the continued success of 
these critical programs. I urge you to accept AVA's funding 
recommendation, and thank you again for this opportunity.
    [The prepared statement of Daisy Stewart follows:]

[Pages 1134 - 1141--The official Committee record contains additional material here.]


    Mr. Wicker. Thank you very much.
    You mentioned career guidance and your prepared statement 
mentions tech prep. Ms. Stewart, there is a feeling out there 
among some people that talk to me that the tech prep program 
somehow categorizes students too early and puts them on a track 
where there is not an ability for college preparation.
    I am just, I always supported tech prep when I was in the 
State legislature. I was concerned to hear this sort of feeling 
out there. I wondered if you would comment on that. Are we 
deciding for students at an early age that they can't go to 
college and they must be in vocational training?
    Ms. Stewart. Certainly that is not the intent of tech prep 
or any of the school to career or vocational educational 
programs. The purpose these programs seek to serve is to help 
students expand, not enclose, their career opportunities. We 
want to help young people recognize all the different possible 
careers they might have, start to make tentative, at least, 
choices earlier in their career paths in terms of their school 
programs, so that they start to learn at the elementary and 
middle schools the kinds of various careers that are available 
to them.
    Perhaps to indicate that they are interested in something 
in the health care area, or they are interested in something in 
the electronics area. But not to make specific career 
decisions, and certainly not to close doors, but rather to see 
that post-secondary education, whether that might be a two year 
community college program or a technical program, or whether it 
might go on and certainly include a four year college degree, 
are expanding their opportunities rather than detracting.
    I appreciate your comment, because that is a concern that 
has been expressed by groups.
    Mr. Wicker. It really is out there.
    Ms. Stewart. Yes, it is. And it is something that we are 
trying to provide information, so that individuals will 
recognize that the purpose is not to track or to place students 
in a limited career opportunity, but to help them learn more 
about the various opportunities that are available.
    I am of course at a four year college and university. We 
get many students who come to the university thinking they want 
to major in a certain career area, but with very little 
information about what that really involves and the type of 
work that it includes and the kinds of skills and knowledge 
that they need.
    Mr. Wicker. Right. I went to law school and I found out. 
[Laughter.]
    Ms. Stewart. So the goal would be through counseling and 
through career exploration and through opportunities to do job 
shadowing and participate with career mentors, that young 
people would recognize what a career in law or engineering or 
any field is like, so that they can make decisions and perhaps 
choose more wisely, so that we are making better investments in 
the education of our young people, not only our investments but 
also their time and their parents' dollars and investments that 
they are making as well.
    Mr. Wicker. In a good tech prep program, at what grade 
level would the first intervention be with the child's career 
thinking?
    Ms. Stewart. We would like to see information more broadly 
about careers be presented not just in high school, but 
throughout elementary and middle school. Not that that would be 
an intervention, but information.
    Mr. Wicker. Information and how about curriculum?
    Ms. Stewart. The curriculum, we see that the theme of 
working around careers and the future work lives of individuals 
can be a theme that is appropriate for education at all levels. 
The first specific curriculum dealing with subjects in terms of 
occupational skills would typically be at the 10th, 11th and 
12th grade levels, after students have had an opportunity to 
explore possibilities, and then to see that they might want to 
take a pre-occupational class at the 9th or 10th grade level. 
But more specific skill training would typically come at the 
11th and 12th grade levels, and would be built to move right 
in, then, to post-secondary training for those students who 
want to pursue it.
    Mr. Wicker. We are under time constraints, but a student 
makes, a student goes into non-traditional college preparatory 
courses in the 10th and 11th grade. Is he or she precluded from 
moving back in the senior year to a course that will get you to 
a State university?
    Ms. Stewart. Not at all. The program that the students 
would be in, while they might be choosing their electives from 
subjects that would be in a vocational area, they would still 
be taking courses in math, science, English, social studies 
area that would certainly give them the course work needed to 
enter institutions of higher education, not only post-secondary 
community colleges, but also four-year colleges and 
universities.
    Mr. Wicker. Thank you so much.
    Ms. Stewart. Thank you.
    Mr. Wicker. Glad to have you with us.
                              ----------                              

                                          Thursday, April 17, 1997.

                                WITNESS

KAREN PURVES, ANIMAL PROTECTION INSTITUTE
    Mr. Wicker. And I have deviated from the time constraints 
now. But we have with us from the Animal Protection Institute 
Ms. Karen Purves. And Ms. Purves, we are glad to have you, and 
you may proceed.
    Ms. Purves. Hopefully my testimony will be particularly 
interesting to you for two reasons. Number one, I have some 
dazzling visuals for you to see. And number two, I am going to 
talk to you about a way to save money. I am not going to ask 
you to spend more money.
    That is what I am here to do.
    The focus of my presentation today is on cigarette smoking 
and nicotine research funded by the National Institutes of 
Health. Occasionally, those of us who choose to work on animal 
issues as a profession----
    Mr. Wicker. I noticed that pack of cigarettes and was glad 
that Dr. Cunningham had already left the room.
    Ms. Purves. Correct. I actually am going to refer to his 
testimony momentarily. But I just want to give myself a little 
bit of credibility.
    As I said, those of us who choose to work in the animal 
profession are often criticized or misunderstood as being anti-
research or anti-science. And also not willing to really be 
cooperative with the system. I just want to assure you that 
neither I nor my organization that I represent are anti-
science, anti-research, and I pride myself on working with the 
system to establish cooperative efforts.
    As Dr. Cunningham did mention, tobacco smoking is an 
epidemic. It is costing hundreds of billions of dollars in 
health care costs annually. However, I am here to say that 
spending, throwing more money at that problem is not 
necessarily the answer. I understand that the subcommittee and 
the Government as a whole needs to look at the macro picture.
    But I am here to tell you a little bit about the micro 
picture, and to say, well, we want 9 percent more money or we 
want $26 million more for our program, when people are 
advocating that, I am here to say, I have looked at the funding 
for 1996 National Institutes of Health for those research 
experiments on both humans and non-human animals in the 
specific areas of cigarette smoking and nicotine research. The 
findings, when I looked at that research, were very disturbing 
to me.
    Part of the problem is that as this New York Times article 
from 1958 showed, that there was a link between cigarette 
smoking and cancer, that the public was aware of it, this is 
not just what the tobacco industries were keeping privately, 
but what the public was aware of.
    In 1996, there were 123 abstracts that were funded through 
the National Institutes of Health, totaling over $28 million, 
specifically looking at cigarette smoking and nicotine 
research. Forty percent of that was on animals, non-human 
animals, and 60 percent of that was on human animals.
    I have two major concerns about this funding. First is 
those that appear to be duplicative of what we have already 
found to be true in humans, and second is those that are 
looking at such minutiae as not to appear to have relevance to 
either animals or humans.
    Both of these types of studies, which I would contend are 
the vast majority of both human and non-human animal studies 
that were funded by the NIH in 1996, I would contend, are a 
complete waste of taxpayer dollars. I am not advocating 
throwing the baby out with the bath water. However, I am 
submitting that nearly all the research on non-human animals by 
the NIH in this area appears to be research for research's 
sake.
    Therefore, I am requesting that you consider eliminating 
future funding beginning in fiscal year 1998 of non-human 
animal experiments in the areas of cigarette smoking and 
nicotine research. I think that before another penny is spent, 
taxpayers have a right to be educated on what we have learned 
from previous research.
    What is being funded? First of all, I would like to say 
that three out of every four abstracts that are submitted to 
the National Institutes of Health are denied because of limited 
funding. So the research that is being funded is considered to 
be the creme de la creme, can we say. For every dollar that is 
spent needlessly on wasteful research is a dollar taken away 
from research that would appear to be more promising.
    One thing that I found particularly disturbing is when 
looking at cigarette smoking and nicotine research, nine of the 
institutes were funding research in this area. It would appear 
to me to have less duplication within a particular calendar 
year or between calendar years, that the funding would be 
limited to a single institute.
    What are some samples of the research that is going on? In 
1996, two of the studies, one, rats will be chronically treated 
with nicotine to see its effects on the immune system. This was 
documented in 1952 in humans.
    In 1996, rhesus monkeys would be taught to self-administer 
nicotine to evaluate the reinforcing effects of nicotine. The 
reinforcing effects of nicotine have been documented in humans 
since at least 1977. This particular research has been funded 
for 17 prior year, to 1996 for this particular research.
    As far as the research looking at the minutiae, basic 
research looking at the details of cigarette smoking and 
nicotine research, my favorite, we spent over $100,000 at Tufts 
University to study the manduca sexta, otherwise known as the 
tobacco hornworm, to understand its ``low sensitivity to 
nicotine.''
    Also, rhesus monkeys will be subject to acute and chronic 
administration of caffeine and nicotine. This is one of our 
closest human relatives in 1996. We have 43 million smokers in 
the United States, many of whom are addicted to caffeinated 
products, both coffee as well as carbonated beverages. I would 
think that of those 43 million people, we could get more people 
to willingly become a part of a study that looks at both 
caffeine, taking in caffeine as well as smoking cigarettes.
    So API recommends simply not spending the money that would 
have been spent on these projects.
    One final note, I did write to six different researchers 
that I found who had specifically studied something that had 
been elucidated in humans prior to that. And not one of the six 
researchers responded to my inquiry letters.
    So in closing, I would urge that you consider eliminating 
or reducing the 1998 and beyond appropriations specifically for 
research primarily concerned with cigarette smoke and nicotine 
on human animals. Let's spend all of our money a little more 
wisely.
    Thank you.
    Do I have any more seconds to show you some more visuals?
    [The prepared statement of Karen Purves follows:]

[Pages 1146 - 1153--The official Committee record contains additional material here.]


    Mr. Wicker. No, but the record will be open, and you 
certainly made a very fine presentation. I will follow up with 
some of the grantees with regard to whether we are discovering 
things over and over with regard to nicotine.
    Ms. Purves. I would be happy to provide any additional 
information.
    Mr. Wicker. Let me just ask, were the rhesus monkeys really 
disadvantaged by the caffeine?
    Ms. Purves. I was looking at the nicotine aspect. But 
actually, they find that the interaction of when you do ingest 
nicotine as well as caffeine, the effects are different than if 
you just are ingesting caffeine as opposed to just ingesting 
nicotine.
    Mr. Wicker. Thank you so much.

                              ----------                              

                                          Thursday, April 17, 1997.

                                WITNESS

DAVID M. GIBSON, ASSOCIATION OF SCHOOLS OF ALLIED HEALTH PROFESSIONS

    Mr. Wicker. Dr. David M. Gibson, Dean of the School of 
Health Related Professions at the University of Medicine and 
Dentistry of New Jersey, on behalf of the Association of 
Schools of Allied Health Professions.
    Dr. Gibson.
    Mr. Gibson. Thank you, Mr. Chairman.
    I would like to start by saying that any savings that might 
have been accrued from our previous speaker might be well 
applied to what follows. [Laughter.]
    I am David Gibson, Chairman of the Government Relations 
Committee of the Association of Schools of Allied Health 
Professions, a not-for-profit organization representing 93 
higher education institutions as well as hundreds of individual 
members.
    The professions themselves provide numerous services, 
including primary care and work in all types of health care 
settings. Allied health care personnel are responsible for the 
delivery of health or health related services involving the 
identification, evaluation and prevention of diseases and 
disorders, dietary and nutrition services and rehabilitation 
and health systems management.
    Our association believes the Federal Government has a 
central role to play in assuring that the Nation has an 
adequate supply of competently prepared faculty 
andpractitioners in the allied health professions, especially to 
attract students, especially those from minority and under-served 
portions of our population.
    Funding for the Section 767 Allied Health Grants program 
under Title VII last was authorized at $5 million. During the 
past seven years, approximately 700 applications were received 
by the U.S. Public Health Service, but money was available to 
fund but 10 percent of those. Mr. Chairman, a brief summary of 
what has been accomplished utilizing very, very little of the 
Federal dollars allocated to us follows.
    Grants have been awarded to a variety of post-secondary 
institutions and consortia, involving approximately 40 allied 
health disciplines in more than 30 States, including awards to 
historically black colleges and universities. Close to 2,000 
academic clinical faculty have participated in workshops and 
short term training programs.
    More than 12,300 students have been or are being educated 
as a result of expanded enrollment. Almost 14,000 combined 
practitioners and patients collaborated in geriatric 
assessments and rehabilitation activities. Student recruitment 
and retention activities have affected almost 9,000 
individuals, 95 percent of whom are either minority or 
disadvantaged students.
    Sixty-two percent of the grant programs have resulted in 
substantive curricular changes such as in geriatrics, and 41 
percent of these grants include interdisciplinary education and 
training. Fifty thousand monographs and 750 video tapes are 
currently being distributed to schools of health related 
professions and allied health through the United States as we 
speak.
    Our constituents have met and have exceeded their stated 
proposals, goals and objectives. Thus, these grants have proven 
to be sound health care and educational investments.
    Mr. Chairman, the National Commission on Allied Health, 
which was established under Public Law 102-408, has issued its 
final report two years ago this month. Among the 
recommendations germane to Congress are the following. Support 
allied health research, service and training demonstrations to 
test high quality lower cost allied health efforts as a 
substitute to more expensive medical or institutional services. 
Authorize the Secretary of the Department of Health and Human 
Services to establish an office of allied health professions 
within HRSA and support strengthening and expanding 
interdisciplinary and core curricula clinical practice programs 
to meet work force needs.
    We endorse these recommendations and urge Congressional 
support of $10 million to achieve their implementation. In 
addition, we ask that you consider another important 
recommendation of the National Commission to provide $5 million 
for the Agency on Health Care Policy Research each year for 
five years to support outcome based research projects.
    Mr. Chairman, as you know, our health care system is 
undergoing rapid dramatic and increasingly complex change. 
Hospital centers, specialty care, is being focused away and 
moved to, in a significant degree, to a system in which health 
care personnel must network together in health care networks 
and managed care networks. Curriculum changes are needed and 
they are needed desperately and quickly.
    Currently the only source of funding that we have under 
Section 767 grants program and another grant for $5 million was 
never funded. We ask consideration of this $5 million funding 
for Section 766, which would make it possible for us to develop 
faculty for our schools and universities.
    I would close, Mr. Chairman, by noting that even though we 
are approximately 2 million strong, we have less than 2 percent 
of the Labor-HHS appropriations. We ask your continued 
assistance as we move forward and bring qualified, certified 
individuals to the health care of the American people.
    I ask to leave the rest of my testimony with the committee. 
And I thank you.
    [The prepared statement of David Gibson follows:]

[Pages 1157 - 1166--The official Committee record contains additional material here.]


    Mr. Wicker. I thank you, and certainly your entire 
testimony will be included in the record.
    Mr. Gibson. Thank you.
    Mr. Wicker. Thank you so much, and good luck.

                              ----------                              

                                          Thursday, April 17, 1997.

                                WITNESS

DONALD J. REED, ASSOCIATION OF UNIVERSITY ENVIRONMENTAL HEALTH SCIENCES 
    CENTERS

    Mr. Wicker. Don Reed, Professor of Biochemistry, 
representing the Association of University Environmental Health 
Science Centers.
    Mr. Reed. Thank you, Mr. Chairman, members of the 
committee, ladies and gentlemen.
    I want to thank you for giving me this opportunity to 
testify on behalf of appropriations for the National Institute 
of Environmental Health Sciences and especially for the NIEHS 
supported environmental health sciences center program.
    One of the smallest NIH institutes, NIEHS achieves its 
mission through multidisciplinary biomedical research programs, 
prevention and intervention efforts, and communication 
strategies that encompass training, education, technology 
transfer and community outreach.
    NIEHS has wisely chosen to develop an environmental genome 
project to join forces with the newly created National Human 
Genome Research Institute. A new effort by NIEHS is the use of 
transgenic mouse models for rapid identification of 
environmental mutagens and carcinogens. These cancer 
susceptible mice will reduce the number of animals, time and 
costs for these tests.
    Major participants in the NIEHS mission are the 26 
university based centers that have research and teaching 
programs with community outreach aimed at disease prevention, 
with an emphasis on the illnesses of special populations, 
women, children and minorities, who are most vulnerable to many 
environmental exposures.
    In the 30 years of their existence, the NIEHS centers have 
contributed substantially to the prevention of environmentally 
related diseases in the United States and abroad. For example, 
NIEHS centers at Harvard and New York University provided the 
comprehensive scientific basis for air pollution control. 
Obviously, with the present controversy over particles in the 
air, much more research is needed.
    Let me cite a few specific examples of how the NIEHS 
centers continue to contribute to the prevention of disease. At 
the University of Miami Center, marine natural toxins were 
found to reduce immunocompetence and weaken the immune system. 
Now there is the potential for introducing immunization regimes 
against these toxins.
    At Oregon State University, my university, the possible 
role of food plant chlorophyll, the green material in plants, 
is being studied for cancer prevention. At Columbia University 
Center, researchers have described a new hypothesis that a 
variant of a specific gene may represent susceptibility to 
Parkinson's disease.
    The Vanderbilt University Center reported a major finding 
about the genetic and environmental contributions to 
Alzheimer's disease. The NIEHC center at MIT has developed a 
means to measure mutations directly in the DNA of normal human 
tissue.
    At the University of Washington, researchers have 
determined that a genetic difference may make certain people 
more susceptible to toxic effects of some pesticides, and a new 
avenue for treatment of chronic pesticide and nerve gas 
poisoning is being developed.
    Center investigators at the University of Texas Medical 
Branch, Galveston and Vanderbilt University have teamed up to 
provide a new design for a drug against AIDS. Until now, 
tobacco carcinogens and lung cancer possessed a very strong but 
not a direct association. The NIEHS center at the University of 
Texas, Smithville, has described the first molecular evidence 
directly linking a cigarette carcinogen, benzopyrene, and human 
lung cancer.
    Mr. Chairman, our strategies must be based on the best 
possible science and risk assessments. Without the best 
science, we risk not providing enough protection or conversely, 
the risk of unnecessary public concern and public expense. This 
is a key reason why the research conducted at NIEHS centers is 
so important to our Nation's health. Sound scientific data 
allows sound public policy.
    In conclusion, even with severe budget constraints on 
Congress, we urge that your committee fund the 
environmentalhealth needs of this country with an increased 
appropriation of 9 percent to NIEHS. The many scientific opportunities 
of today would justify a much larger increase. However, any increase 
you can provide the NIEHS will be a very sound investment in 
outstanding science and enhance the intervention and prevention efforts 
targeted to the environmental health needs of our citizens.
    Thank you.
    [Clerk 's Note.--Information required pursuant to clause 
2(g)(4) of Rule XI of the rules of the House of Representatives 
was not received from this witness or from an entity 
represented by this witness.]
    [The prepared statement of Donald Reed follows:]

[Pages 1169 - 1176--The official Committee record contains additional material here.]


    Mr. Wicker. Thank you very much, Dr. Reed.

                              ----------                              

                                          Thursday, April 17, 1997.

                                WITNESS

HARVEY FRIEDMAN, BLUE CROSS BLUE SHIELD ASSOCIATION

    Mr. Wicker. Our final witness this afternoon is Harvey 
Friedman, Vice President, Medicare Administration for Blue 
Cross and Blue Shield Association.
    Mr. Friedman. Thank you, Congressman.
    I am here today on behalf of the Blue Cross Blue Shield 
Association and those Blue Cross Blue Shield plans who are 
Medicare carriers and fiscal intermediaries.
    Blue Cross and Blue Shield plans are the major Medicare 
contractors for the Health Care Financing Administration, 
processing about 90 percent of Medicare Part A claims and about 
two-thirds of Medicare Part B claims.
    We are very concerned that the Administration's recommended 
contractor funding level for 1998 is entirely inadequate. 
Particularly problematic is the proposal to reduce the amount 
budgeted for claims processing by 17 percent, compared to 
fiscal year 1997. The impact of this cut would be a 
deterioration in beneficiary and provider services, including 
reduced claims payment timeliness and decreased responsiveness 
to beneficiary and provider inquiries and appeals, and the 
possibility of additional resignations by Medicare contractors 
because of their inability to effectively manage the work loads 
within the proposed budget.
    Funding constraints have been a contributing factor in 
recent contractor resignations, including several Blue Cross 
Blue Shield plans and Aetna. Based on this recent history, we 
must conclude that more contractors would be likely to exit the 
program next year if the Administration's budget proposal is 
approved in its current form.
    For the past several years, Medicare claims volume has 
grown almost three times faster than the funds available to 
manage the incoming work load. Our written testimony contains 
more detailed information on the work load volumes for fiscal 
year 1998. Let me highlight a few.
    In fiscal year 1998, Medicare contractors will be expected 
to pay almost 900 million claims, more than 3 million each work 
day; respond to over 40 million telephone and written inquiries 
from beneficiaries and providers; and handle over 7 million 
appeals for reconsideration of the initial claims 
determination. Claims processing activities represent the 
largest portion of the contractor budget. Adequate funding for 
these responsibilities is essential to avoid backlogs and 
payment delays.
    Claims payment is also the first line of defense against 
fraud, abuse and overpayment. Claims processing funds support a 
number of safeguards designed to detect duplicate payments, 
assure that payments are made for Medicare eligibles, determine 
non-covered services, and make reasonable charge reductions in 
Medicare Part B.
    When the total claims payment budget is divided by the 
number of claims estimated to be paid in fiscal year 1998, 
HCFA's budget proposes to reduce basic claims processing unit 
costs by approximately 17 percent from 1997 to 1998. We believe 
that reduction is understated, and that the budget decrease may 
be closer to 20 percent.
    Contractors have been able to reduce the cost of claims 
processing in the past largely by increasing the numbers of 
electronic claims. This has been extremely successful.
    However, while some further cost efficiencies can be 
achieved in this way, the magnitude of these savings will be 
much smaller, because the majority of health care providers, 
especially hospitals and other large volume providers, have 
already made the shift to computerized billing.
    Currently, over 95 percent of Medicare Part A and 75 
percent of Medicare Part B claims are submitted electronically.
    In conclusion, Mr. Chairman, as budgets become tighter and 
appropriations are focused on the cost effectiveness of each 
and every dollar spent, we believe that Congress will find that 
funding for the Medicare Administration is well spent. Medicare 
contractors have an incredible record of efficiency. 
Contractors' administrative costs represent less than 1 percent 
of total Medicare benefits.
    At some point, living within the same or reduced funding 
levels as work loads increase significantly is simply not 
possible without serious ramifications. Funding for Medicare 
contractors to manage Medicare's project $230 billion budget 
must keep pace with the growing claims work load.
    We look forward to working with you this year to maintain 
Medicare's high level of service to its beneficiaries, while 
continuing to improve the efficiency of its operation.
    Thank you very much. I would be pleased to answer any 
questions.
    [The prepared statement of Harvey Friedman follows:]

[Pages 1179 - 1187--The official Committee record contains additional material here.]


    Mr. Wicker. Thank you very much, Mr. Friedman. We 
appreciate your attendance today.
    There being nothing further before the subcommittee, we are 
adjourned until Wednesday next at 10:00 a.m. Thank you very 
much.
                                ----------

                                         Wednesday, April 23, 1997.

                                WITNESS

RANDALL C. MORGAN, JR., M.D., NATIONAL MEDICAL ASSOCIATION

    Mr. Istook [assuming chair]. Ladies and gentlemen, I think 
we are ready to proceed. Those who have not already taken a 
chair might do so.
    I am Congressman Istook and also on the panel this morning 
is Congressman Stokes from Ohio. Let me assure you that 
although not all members of the subcommittee are present, 
remarks will be placed in the record. We have staff members 
from other offices here. And even if they are not reviewed in 
person, I can assure you they are reviewed from the record of 
the subcommittee.
    We appreciate the fact that so many of you have come 
significant distances to be here today to testify, and I hope 
also to contact your own members of Congress.
    As we begin the hearing this morning, I do want to remind 
the witnesses that we have two new provisions that the House 
has adopted in its rules. In addition to the written statement, 
non-Governmental witnesses are required to submit a curriculum 
vitae and a statement concerning Federal grants or contract 
fund that they have received or the entity which they represent 
has received.
    If you have not already done so, if you have any questions 
about these provisions, please contact the subcommittee staff. 
They will help you make arrangements on that. Otherwise, it is 
possible that your testimony may be stricken from the record if 
we do not receive that disclosure.
    Finally, our schedule this morning, as typical, is very 
tight. The five minute rule on the testimony of each witness 
must be strictly enforced. I will try to give, with the gavel 
or some other tap, an indication when you are at about four 
minutes and 30 seconds, so if you need to kind of reword or 
rephrase some things and wrap it up quickly, you will have the 
chance to do so before I have to cut you off at the five minute 
mark.
    So I appreciate your consideration for the others that are 
also here to testify.
    I believe our first witness is from the National Medical 
Association, Dr. Randall Morgan, Jr. Dr. Morgan, if you would 
please take the seat there, and I believe Congressman Stokes 
has some remarks he wants to share.
    Mr. Stokes. Thank you very much, Mr. Chairman.
    Dr. Randall Morgan appears here, Mr. Chairman, for the 
first time. And he appears here also at my invitation.
    Dr. Morgan is President of the National Medical 
Association. This is an organization founded in 1895 in 
Atlanta, Georgia, by 12 African-American physicians who had 
previously been excluded from membership in the American 
Medical Association. Today, this organization represents over 
22,000 African-American physicians throughout the United States 
and its territories.
    Dr. Randall Morgan is presently a clinical associate for 
the Department of Orthopedic Surgery at Northwestern 
University, where he has been for 23 years. He is also the 
clinical assistant professor of orthopedics at Indiana 
University, Northwest Center for Medical Education, and a 
clinical instructor for the Department of Orthopedic Surgery at 
Howard University.
    We are very pleased, Mr. Chairman, to be able to welcome 
him before our subcommittee this morning. I thank you.
    Mr. Istook. Thank you, Mr. Stokes.
    Dr. Morgan, of course, you'll have your full five minutes. 
We are certainly glad that you are here.
    Dr. Morgan. Thank you, Mr. Chairman, and also Congressman 
Stokes and members of the subcommittee.
    Thank you for this opportunity to present the views of the 
National Medical Association. I am a practicing orthopedic 
surgeon in Gary, Indiana. The major goals of our association 
are to improve the health status of minorities in the 
community, and to increase the representation of African-
Americans and other under-represented groups in medicine.
    Mr. Chairman, the programs supported by your subcommittee 
represent a critical Federal link to solving these identified 
national priorities. Working closely with this subcommittee and 
Federal agencies, the National Medical Association is committed 
to ensuring that the advances made through biomedical research, 
health professions training and community based public health 
and disease control are equally available to all Americans, 
particularly those who have not fully benefited from these 
advances.
    The long term prospects for improving the health status 
disparities that exist among minorities in this country hinges 
on a strong Federal commitment to biomedical research. This 
committee is to be commended for its support of the National 
Institutes of Health in the face of declining discretionary 
dollars. Yet, in order to fully realize the benefits of 
scientific investigation, much more needs to be done by NIH and 
policy makers to ensure that those who are suffering 
disproportionately are able to share in all of these advances.
    Throughout the NIH, there are a variety of programs focused 
on improving the biomedical commitment to study health 
disparities that exist among minorities when compared to the 
general population. They include the minority biomedical 
research service, minority access to research careers, research 
centers at minority institutions, and the minority health 
initiative.
    As a starting point, we believe that as increased funding 
is made available to NIH, this subcommittee and the NIH 
leadership should specify those programs which focus upon 
improving minority health. These programs should receive a 
proportionate increase in funding to that of NIH overall. In 
recent years, unfortunately, this has not occurred. We believe 
that a policy such as this is long overdue.
    In order to increase the participation of minority patients 
in clinical research, minority physicians must be encouraged to 
become research scientists. Clearly, every responsible study 
ever conducted demonstrates that African-Americans and other 
minorities are more likely to serve in medically under-served 
areas than are their non-minority counterparts. Even though 
African-Americans represent 12 percent of the population in the 
United States, only approximately 2.5 percent are physicians or 
other health professionals.
    If it is a national priority to narrow the health status 
gap that exists among minorities and non-minority populations, 
then it is imperative that we increase the number of minorities 
serving in the health professions. Health professions training 
initiatives at HRSA are helping to address these disparities 
through the minority centers of excellence programs, the health 
career opportunities program, the exceptional financial needs 
program and scholarships for disadvantaged students.
    This subcommittee's continued support for these initiatives 
is vital to ensuring that a bright, capable minority who 
otherwise would aspire to a health professions career if it 
were not for the financial burden and matriculation challenges, 
there is an opportunity for that person to become a physician, 
dentist, pharmacist, nurse, or other health professional.
    Health status changes that exist in this country are 
magnified in under-served minority communities. African-
Americans suffer almost double the rate of infant mortality 
compared to whites. Cancer, diabetes, hypertension and stroke 
rates are disproportionately higher among African-Americans and 
among Hispanics compared to the non-minority population.
    The injury rate for African-American children age 1 to 14 
is 55 percent higher than for white children. Youth violence 
has become a public health epidemic, with homicide being the 
second leading cause of death for young people between the ages 
of 15 and 24, and the leading cause of death for African-
American death in the same age group. Twenty-nine percent of 
all AIDS cases in the United States are among African-
Americans, even though they represent only 12 percent of the 
population.
    The NMA has initiated a partnership with HCFA in an effort 
to understand the impact of managed care on minority providers 
and patients, particularly Medicaid beneficiaries. Plans are 
underway to collect data to analyze these issues formally. The 
NMA strongly encourages continued support for HCFA to allow for 
advancement of this effort.
    Mr. Chairman, thank you for the opportunity to present the 
views of the National Medical Association. I would be pleased 
to respond to any questions you or the subcommittee might have, 
or want to address to us in the future. Thank you very kindly.
    [The prepared statement of Randall Morgan, M.D., follows:]

[Pages 1192 - 1198--The official Committee record contains additional material here.]


    Mr. Istook. Thank you very much, Dr. Morgan.
    Mr. Stokes, did you have any questions?
    Mr. Stokes. Nothing further, Mr. Chairman. Thank you very 
much.
    Mr. Istook. Dr. Morgan, we very much appreciate your 
testimony.
    Dr. Morgan. Thank you.

                              ----------                              

                                         Wednesday, April 23, 1997.

                                WITNESS

STANLEY O. IKENBERRY, AMERICAN COUNCIL ON EDUCATION

    Mr. Istook. I believe our next witness is from the American 
Council on Education, Mr. Ikenberry, Stanley Ikenberry, thank 
you for coming.
    Mr. Ikenberry. Thank you, Mr. Chairman. It is a pleasure to 
be here. I am Stanley Ikenberry, former president of the 
University of Illinois for some 16 years, and now president of 
the American Council on Education here in the city. We are the 
Nation's principal coordinating body for higher education in 
this country, both public and private, large and small, two and 
four year institutions nationwide. And also affiliated with our 
institution are numerous, both national and regional higher 
education associations, 26 of whom have signed in support of my 
testimony that is filed with the committee.
    If I may, Mr. Chairman, I would just like to make a few 
brief comments and then would be pleased to respond to any 
questions that you or members of the committee might have.
    First, I want to thank you, very frankly, for giving us the 
opportunity to testify here this morning and also for the 
support this committee has provided to higher education over a 
number of years, but particularly at the present time in the 
context of strained Federal budgets.
    This country has a strong diverse locally controlled system 
of higher education. It serves over 14 million students, it 
involves over 3,700 institutions. It shapes the professions, we 
provide over one half of the Nation's biomedical research. It 
influences health care, telecommunications, computing, 
agriculture and a vast array of other aspects of our Nation.
    By strengthening student aid, by supporting biomedical 
research, by granting us access to this hearing, you help keep 
that system strong. I want to thank you for that.
    I would like to concentrate just quickly on two points. 
First is that I think the opportunity for the 105th Congress 
and the significance of the higher education policy issues 
before you is in many ways unprecedented. This is true because 
of both the breadth of the proposals that are before you and 
the significance of several of these.
    I would like to concentrate on just one of these aspects, 
that is the Pell Grant program that provides the fundamental 
foundation, if you will, for access to higher education in this 
country. It in effect is a needs-based voucher system that is 
transferrable to any institution, any accredited institution in 
this country. It is transferrable where the student decides the 
student wants to go, in a particular State where that student 
is a resident or nationally or to any institution in this 
country. It is the centerpiece, if you will, of access and 
choice among higher education options in America.
    Over the last two years, the Pell Grant maximum award has 
improved considerably, but earlier in the decade, since 1979, 
it has lost considerably in its purchasing power. Two years 
ago, the Pell Grant was worth roughly 60 cents on the dollar in 
terms of its 1979 value. Last year, through the actions of this 
committee and the Congress, you have restored that purchasing 
power now up to about 66, 67 cents on the dollar.
    There are proposals now to move the Pell Grant maximum 
award level to $3,000 per student, and to broaden the 
eligibility of the program. If that were improved, it would 
improve the purchasing power still further to 75 cents on the 
dollar. I hope the committee will give careful consideration 
and if at all, find it possible that you will give your strong 
support and endorsement to continuing to improve Pell Grant 
maximums and to restore the lost purchasing power for that 
program. It is so vital to the future of higher education.
    Second, I want to say just a word about college costs, 
because I know that members of this committee are concerned 
about this, members of the public are concerned about it. And 
very frankly, our colleges and universities are concerned as 
well. The goal of higher education in this country is to 
attract students and to provide opportunity and certainly not 
to push students away by the result of fear of cost pressures.
    Colleges and universities are making a significant effort 
to try to do that. In fact, the rate of tuition increases is 
coming down. I think this year we will continue to see progress 
on that in the 3 to 5 percent range very close to inflation 
levels.
    Mr. Chairman, there is a chart in the back of my testimony 
to which I would call attention that shows the importance of 
student aid in helping keep costs down, both at institutions 
and providing access for students.
    Let me conclude my testimony, however, within the limits of 
the committee, and I would be pleased to respond to any 
questions that you or Congressman Stokes might have.
    [The prepared statement of Stanley Ikenberry follows:]

[Pages 1201 - 1212--The official Committee record contains additional material here.]


    Mr. Istook. Okay, we appreciate very much your testimony, 
Mr. Ikenberry.
    Mr. Stokes, did you have any questions?
    Mr. Stokes. No questions.
    Mr. Istook. All right. And certainly, as a father with 
three children in college this fall, I can appreciate what you 
say. [Laughter.]
    Thank you very much for coming.
    Mr. Ikenberry. Thank you, sir, I appreciate the 
opportunity.
                              ----------                              

                                         Wednesday, April 23, 1997.

                                WITNESS

GINA CIOFFI, COOLEY'S ANEMIA FOUNDATION

    Mr. Istook. I believe our next witness is Gina Cioffi, of 
Cooley's Anemia Foundation. Thank you very much for being with 
us. Please proceed.
    Ms. Cioffi. Thank you. Good morning, Mr. Chairman, and 
members of the committee.
    My name is Gina Cioffi, I am the National Executive 
Director of the Cooley's Anemia Foundation. Our organization 
raises medical research dollars and has awarded millions in 
fellowships.
    I am honored to appear before you to thank you for your 
past leadership and urge you to step forward again to support 
Cooley's anemia patients, our families and the 2 million 
Americans who carry the genetic trait for Cooley's anemia.
    Mr. Chairman, by making the National Institutes of Health 
one of the highest priorities for Federal funding, the 
leadership of this subcommittee and its chairman give hope to 
children and their families who are dealing with this disease. 
When a child requires more than 30 blood transfusions a year, 
every year of their life, as our patients do, when a child has 
to be painfully infused with the drug Desferal 12 hours a day, 
every day of their lives, as our children do, when families 
have to put so many aspects of their lives on hold to deal with 
Cooley's anemia, as our families do, it is critical that they 
have the one intangible that this subcommittee can give: hope.
    They need to have the hope that results from knowing that 
persons who are in a position to develop better and less 
invasive treatments, the gene and hormonal therapies, and 
ultimately the cures, are there working for them. Our patients 
have that hope, because of the important work being done at 
Heart, Lung and Blood under Dr. Lenfant, and at NIDDK, under 
Dr. Gorden. But they also have that hope because of this 
subcommittee and this Congress.
    Our written statement goes into more detail about a large 
number of research and treatment issues that confront the 
Cooley's anemia community. This morning, I would like to 
concentrate on the development of a collaborative clinical 
research network to conduct Cooley's anemia research and the 
related issue of blood safety.
    Last year, the Heart, Lung and Blood Institute convened a 
Special Emphasis Panel on New Therapies for Thalassemia, that 
is the medical name for Cooley's anemia. The panel's strongest 
recommendation was that the institute establish a network of 
collaborative clinical centers to study the effectiveness of 
new clinical interventions which may reduce the morbidity and 
mortality of Cooley's anemia patients.
    According to the minutes of the panel, since no single 
clinical center has enough patients to undertake a meaningful 
study, a collaborative clinical network is considered to be the 
most efficient and cost effective plan to undertake this 
translational research. Such a network would ensure that common 
protocols are followed for the five areas of clinical study 
cited by the panel.
    I recently returned from an international conference on 
thalassemia and can report that three new oral chelator drugs 
will be ready for clinical trials within the next two years. 
Having this network up and running by that time will facilitate 
bringing these drugs to the patients who need them.
    The establishment of a clinical network can serve as a 
model for future development of such networks for groups with 
relatively small patient population bases. These networks have 
been widely used with large population groups, but are equally 
well suited for small groups where no single center has a 
sufficiently large population to conduct scientifically valid 
clinical studies that we need.
    Another example of the possible use of this network extends 
beyond our patient population. Our patients are the largest 
single group of chronically transfused patients. The average 
patient has a transfusion every 10 to 14 days. As a result, 
they are a walking test case for the safety of the blood 
supply.
    Working closely with the FDA and Centers for Disease 
Control and Prevention, Heart, Lung and Blood can use this 
network to monitor the safety of the blood supply on a daily 
basis. This would provide timely information that would be 
critically important for our patients, as well as the general 
surgical and trauma patients who may require transfused blood.
    To stay alive, our patients undergo 12 hours of daily 
painful treatment, in addition to the blood transfusions. The 
establishment of the clinical centers will bring us closer to 
the day where treatments and even a cure for Cooley's anemia 
will relieve this burden.
    Toward this end, Mr. Chairman, I would like to request that 
the subcommittee consider the recommendation to fund the 
institutes at the 9 percent increase. And thank you for your 
time this morning. I would be happy to answer any questions.
    [The prepared statement of Gina Cioffi follows:]

[Pages 1215 - 1223--The official Committee record contains additional material here.]


    Mr. Istook. Thank you very much for your testimony and for 
coming. We appreciate it.
    I want to express appreciation to all of the witnesses, you 
have been very helpful and cooperating and sticking with the 
time schedule that we have. I want to thank you for that.

                              ----------                              

                                         Wednesday, April 23, 1997.

                               WITNESSES

ERIKA MUSSER
GAYLEN KAPPERMAN, BRAILLE TRAINING

    Mr. Istook. We have Erika Musser and Professor Gaylen 
Kapperman, representing Braille Training. I do not know which 
of you to recognize first, but the time is yours, and please go 
right ahead.
    Ms. Musser. I used to come alone, and now I bring Dr. 
Gaylen Kapperman with me.
    I am Erika Musser, as you said. I am a mother of a totally 
blind daughter, and I have adopted, as my mission to raise an 
awareness among members of Congress, that braille literacy 
enhances the options for education and opens the doors for job 
opportunities for blind Americans.
    Recently, Secretary of Education Richard Riley initiated a 
national campaign to raise public awareness of and support for 
literacy, saying that, ``Literacy is about more than just 
reading well. Literacy is about living well.'' He also claimed 
that literacy is the key that unlocks the world of employment.
    Congress cannot exclude blind Americans from this ambitious 
education agenda. Presently, the braille literacy rate among 
blind Americans is still only 12 percent. We must drastically 
raise this figure. Among working age blind Americans 
approximately 70 percent are unemployed. We must drastically 
reduce this figure.
    President Carl Augusto of the American Foundation for the 
Blind, who is an enthusiastic braille reader, and Chairperson 
Marca Bristo of the National Council on Disability join me in 
the promotion of braille as a tool for equality to life and 
learning.
    I kindly ask this committee for an appropriation of $1 
million for fiscal year 1998.
    I feel very honored to introduce to this committee Dr. 
Gaylen Kapperman of Northern Illinois University. In the past, 
he has received two braille training project grants from the 
Rehabilitation Services Administration. His contribution and 
dedication to reduce Braille illiteracy are highly commendable. 
I would like that he shares with you his work and his findings.
    Thank you.
    Mr. Istook. Thank you. Doctor.
    Mr. Kapperman. Yes, thank you very much for giving me the 
opportunity to speak to the issue of braille literacy. As is 
obvious, I am a braille reader myself. I have read braille for 
approximately the last 15 years. I have a deteriorating eye 
disease which eventually will cause me to become totally blind.
    I can speak from personal experience the benefits of being 
able to read braille. For example, I have my, these are trivial 
examples to everybody else, but they are not to us who are 
blind. My microwave oven has braille labels on it, stove, 
washer, dryer, my treadmill, all these things.
    If I could not read braille, I would not even be able to 
operate a microwave oven to pop a bag of popcorn. It is an 
extraordinarily humiliating, degrading experience to have to 
ask the sighted members of your family and friends to do these 
simple tasks that everybody else takes for granted.
    I think that everybody here would agree with me that being 
able to read is extraordinarily valuable to hold significant 
employment. There are, as Ms. Musser has indicated, there are 
thousands of blind people in this country who cannot do that, 
who cannot read, who have no reading method.
    Since 1994, the Federal Government has committed $2 million 
to the effort to combat illiteracy among blind people. This has 
resulted in projects which emanated from the Rehabilitation 
Services Administration under the auspices of the 
Rehabilitation Act, Title VIII. These projects were well 
developed and they made significant contributions. But they do 
not represent the full, complete solution to the problem of 
illiteracy among blind people.
    There are several areas that still need to be attacked. 
Teaching braille to speakers of English as a second language, 
teaching braille to multi-handicapped individuals, braille 
music, braille mathematics, all of these require significant 
work and have been neglected over the years. This is seen as a 
national problem. State governments are loathe to contribute 
any money to the solution of this problem. Philanthropic 
organizations are overwhelmed with good causes. And our hopes 
and dreams depend upon the Federal Government.
    It is my understanding that at the present time, in the 
reauthorization of the Rehab Act, there is no mention 
whatsoever of braille literacy. We would urge that braille 
literacy be placed in the reauthorization draft of the 
Rehabilitation Act. Thank you very much.
    [The prepared statement of Erika Musser and Gaylen 
Kapperman follows:]

[Pages 1226 - 1239--The official Committee record contains additional material here.]


    Mr. Istook. Thank you very much. I appreciate each of you 
coming. I am sure that if you have not done so yourself, we 
will make sure that your comments about the Reauthorization Act 
are relayed to the authorizing committee as well.
    Mr. Kapperman. Thank you very much.
    Ms. Musser. Thank you very much.
    Mr. Istook. Thank you. Appreciate your coming.

                              ----------                              

                                         Wednesday, April 23, 1997.

                                WITNESS

ELAINE WILLIAMS, AMERICAN NURSES ASSOCIATION

    Mr. Istook. From the American Nurses Association, I believe 
our next witness is Elaine Williams. Ms. Williams, welcome. You 
may or may not be aware that my wife is a registered nurse. So 
I certainly hear things from her about your profession, and I 
appreciate your coming this morning to fill us in further.
    Ms. Williams. That makes me feel really good. [Laughter.]
    Mr. Istook. She's a very good nurse.
    Ms. Williams. I know she is.
    Mr. Istook. But let me tell you, I sometimes meet some of 
the patients that she serves, and they seem to be very 
appreciative of her. She has a good, good manner with people.
    But please go ahead with your testimony.
    Ms. Williams. Thank you.
    Good morning, Mr. Chairman and members of this 
distinguished subcommittee. I am Elaine Williams, a nurse 
practitioner in the Department of General Surgery at Cook 
County Hospital in Chicago. I ask that my oral statement as 
well as my written, be included in the record today.
    Today, I appear on behalf of the American Nurses 
Association, and its 53 constituent States and territorial 
nurses associations, joined by the Emergency Nurses 
Association. In our written testimony, we have addressed a 
number of programs we believe to be important to nursing and 
health care in our Nation, including programs related to work 
force health and safety.
    As an advocate for the economic and general welfare of 
registered nurses, the American Nurses Association also 
recommends appropriate funding for the Department of Labor and 
related agencies that serve to ensure a safe and fair work 
place. This morning, I will focus my remarks on our interest in 
funding for nursing education and research.
    This subcommittee continues to recognize the importance of 
nurses in the delivery of health care, and I am glad that we 
have someone on the committee that has a nurse in the family. 
It has funded these programs which serve to develop innovative 
practice models to better serve the public. We gratefully 
acknowledge this subcommittee's report, and we recognize that 
you will continue to make difficult choices in this year's 
appropriations, especially in light of the President's fiscal 
year 1998 budget proposal, which disseminates funding for 
nursing education programs.
    Although the nursing community at large is outraged with 
the Administration's proposal, we believe that our shared 
mutual goals of ensuring the Nation of an adequate supply of 
well educated nurses will reaffirm the need for continued 
funding of these programs.
    Mr. Chairman, dramatic changes in our health care system 
are continuing at breakneck speed. Although nurses are aware of 
these changes and the consequences, patients seldom are until 
they become directly faced with situations such as the 
following: premature discharge after a mastectomy, discharges 
23 hours after surgery; 12 hour maternity and newborn hospital 
stays, which prompted Federal legislation to mandate minimum 
length of stay; staffing situations so dire that patients had 
to call 911 to get help while they were in the hospital; 
managed care plans that require pre-approval before patients 
can receive treatment in emergency situations.
    These changes in our health care system have been 
influenced by many factors, including the demand to cut costs, 
and consequent changes in insurance market. The role the for-
profits are playing in the health care industry, including 
dramatic increases in market shares, the aging and increasing 
diversity of the United States population. The ongoing advances 
in medical technology.
    The increasing levels of acuity in hospitalized patients, 
and the strain placed on our resources by long term care issues 
such as cancer, chronic diseases in children, the elderly and 
AIDS. These changes have increased the intensity of nursing 
care required for these patients. Hospitals are becoming large 
intensive care units. Not only are we seeing more acutely ill 
patients in the hospital setting, but we are also seeing 
acutely ill patients discharged to their home or to long term 
care settings.
    The Institute of Medicine study released in January of 1996 
concluded that these very transient health care delivery have 
important implications for the preparation of nurses. We just 
want to go on to emphasize that Federal support of nursing 
education in Title VIII is essential to the future goals of 
public health.
    It also works to increase the number of minority nurses 
available to provide culturally competent health care to the 
under-served communities. We are requesting funding for $65.3 
million for the program funded under the Nurse Education Act.
    We are also asking on priority for nursing research. We 
applaud the committee's commitment to advancing behavioral 
science research.
    We support the Administration's proposed funding level of 
$61 million for this program and would welcome funding in our 
professional judgment recommendation of 9 percent over fiscal 
year 1997. We appreciate this opportunity to comment on funding 
for nursing education and research programs, and we thank you 
for your continued support. Thank you very much.
    [The prepared statement of Elaine Williams follows:]

[Pages 1242 - 1250--The official Committee record contains additional material here.]


    Mr. Istook. Thank you, Ms. Williams. I know you were not 
able to get all of your testimony in, but of course the 
remainder of the written portion will be in the record.
    Ms. Williams. Okay, thank you very much.
    Mr. Istook. We certainly appreciate your coming.
    Ms. Williams. Say hello to your wife. [Laughter.]
    Mr. Istook. I will do that. I would be in big trouble if I 
did not. [Laughter.]
                              ----------                              

                                         Wednesday, April 23, 1997.

                                WITNESS

JOHN SUTTIE, FEDERATION OF AMERICAN SOCIETIES FOR EXPERIMENTAL BIOLOGY

    Mr. Istook. Our next witness is Dr. John Suttie, 
representing the Federation of American Societies for 
Experimental Biology.
    Dr. Suttie, I do not have a research scientist in my 
immediate family. I am sorry.
    Mr. Suttie. Well, maybe.
    Mr. Istook. I have kids in college, though.
    Mr. Suttie. Still have hope, then.
    Mr. Chairman, I am John Suttie, Professor of Biochemistry 
and Nutritional Sciences at the University of Wisconsin. I am 
currently President of the Federation of American Societies for 
Experimental Biology, usually referred to as FASEB. In this 
latter role, I appear before you today in support of adequate 
funding for the National Institutes of Health.
    FASEB has joined with nearly 200 health advocacy 
organizations in asking that this subcommittee continue its 
remarkable bipartisan leadership on behalf of biomedical 
research and to approve an increase in funding for NIH for the 
fiscal year 1998 of 9 percent. As you are aware, this is the 
funding level identified by the NIH through its professional 
judgment process as the amount it believes can be effectively 
used this year. We ask that the subcommittee come as close as 
possible to this goal.
    While each sector of the research establishment brings its 
own different perspectives to this debate, all are here with 
one overarching goal: progress against the diseases and 
disabilities that continue to afflict the U.S. population and 
indeed, the peoples of the world. Other witnesses appearing 
before this subcommittee such as families fighting juvenile 
diabetes, Parkinson's caregivers, victims of breast cancer, 
AIDS or other diseases, represent the causes that the 
biomedical science committee to.
    While FASEB members are practitioners of molecular biology, 
biochemistry, anatomy, nutrition and other basic sciences, our 
cause is to apply our science to the reduction of human 
suffering caused by these diseases. The basic message of both 
the patient advocacy groups and the scientists whom I represent 
today is therefore the same: investment in medical research is 
the first and critical step in prevention, treatment and 
control of disease, which in turn will lead to longer, 
healthier and more active lives.
    As this subcommittee reviews our request for a 9 percent 
increase in funding for next year, we believe you should do so 
in the context of the remarkable accomplishments that past 
investments in NIH have produced. While I do not have time to 
review many of these, one example typifies these 
accomplishments.
    Skin cancer is the most common form of cancer, affecting 
more than 750,000 Americans each year. In recent research, with 
enormous implications for all of oncology, mutations in a 
recently identified human patched gene have been linked to the 
development of many forms of skin cancer. These findings follow 
from the discovery of a similar gene in fruit flies.
    This is an excellent example of the importance of basic, 
untargetted research, which at its onset would not have been 
identified as a special interest to cancer research.
    Mr. Chairman, in FASEB's role as a spokesman for the 
working scientists, I come to you not only as an advocate for 
biomedical research funding, but also to express our views on 
the approaches we as scientists believe will lead to the most 
productive science in the public interest. Our recommendations 
today, therefore, focus not only on the budget but also on the 
methods used to allocate funds among various programs and 
diseases, the so-called system of prioritization of NIH 
funding.
    This issue has been raised by several members during 
hearings before this committee, and will be the subject of 
further hearings next month. While I do not have time to 
address this issue in detail this morning, I will encourage the 
subcommittee as it reviews this important question to maintain 
its historic policy against targeting of research by disease as 
a basis for Congressional allocation of research funding.
    The decision to allocate funding to one area inevitably 
results in less to another. Whether another disease, or another 
avenue of basic science. These decisions cannot be made using 
simple mathematical models, comparisons or purely quantitative 
measures. Allocation decisions are fundamentally matters of 
judgment.
    It is FASEB's view as basic scientists, therefore, that the 
leadership at the NIH, in consultation with the Congress and 
with the public, is in the best position to make these Solomon-
like choices. As one member of your subcommittee said earlier 
this year, let the science call the shots, not science in a 
vacuum, but science managed by the most broadly informed 
science managers with a constant goal of improving human 
health.
    In conclusion, Mr. Chairman, we at FASEB believe that the 
continuation and continuum of scientific discovery which this 
subcommittee has helped to put in place now makes possible real 
breakthroughs in many areas of human health. But continued 
robust support is necessary if this potential is to be 
realized.
    We know you and this subcommittee share our commitment to 
this cause, and will make every effort to provide to the NIH 
the resources that are needed. I will be pleased to answer any 
questions you might have.
    Thank you, Mr. Chairman.
    [The prepared statement of John Suttie follows:]

[Pages 1253 - 1263--The official Committee record contains additional material here.]


    Mr. Istook. Dr. Suttie, we very much appreciate your 
testimony and the material you brought to us. I assure you, we 
will be going through that.
    Mr. Suttie. Thank you.
    Mr. Istook. Thank you.
                              ----------                              

                                         Wednesday, April 23, 1997.

                                WITNESS

FRANCES RAUSCHER, NATIONAL ASSOCIATION OF MUSIC MERCHANTS

    Mr. Istook. Dr. Frances Rauscher, of the University of 
Wisconsin. You are here from the National Association of Music 
Merchants. You are not going to sing your presentation or 
anything, are you?
    Ms. Rauscher. No, and I think you will be very grateful for 
that.
    Mr. Istook. Oh, I do not know. I enjoy music, and the 
important thing is that you enjoy it, too. Please go ahead.
    Ms. Rauscher. Thank you, Mr. Chairman.
    I have prepared a written statement and submitted it for 
the record, and I would just like to briefly summarize it for 
you here today.
    I greatly appreciate the opportunity to testify today. I am 
Frances Rauscher, and I am an assistant professor of child 
development at the University of Wisconsin. My specialty is on 
the effect of music on early brain development and cognition. I 
am here on behalf of the National Association of Music 
Merchants, which represents over 6,000 retailers and 
manufacturers in the music products industry.
    NAMM and other private organizations have generously 
supported our research back to 1989, when we first discovered 
this link between music and intelligence. They recognize its 
importance for enhancing early childhood cognition and also its 
applications for education.
    Congress and the Administration have placed a high priority 
on making the Nation a better place for all our children. The 
research that Gordon Shaw of the University of California at 
Irvine and I have done shows the powerful impact that music has 
on helping children to reach their full potential in, of all 
things, math and science.
    Based on recent neurophysiological modeling and also 
research, we have conducted a series of studies that shows that 
early instruction in music can cultivate the brain's neural 
firing patterns that are also responsible for abstract 
reasoning. In our most recent study, children who were provided 
with keyboard lessons for six months scored significantly 
higher than children in control groups, 34 percent higher, to 
be exact.
    We believe that this early musical enrichment is causing a 
permanent neurophysiological change in these children's brains. 
These are changes that increase their ability to reason 
abstractly in areas that most children and adults find very 
difficult, particularly as we enter this new age of technology.
    Last month, I demonstrated that kindergarten children can 
also benefit from this type of enhancement. Children in four 
Wisconsin classrooms were provided with music training and 
after just four months, these children were scoring 36 percent 
higher than their peers who did not receive the training in 
spatial reasoning.
    What this shows is that public schools are fertile ground 
for this kind of enhancement, and it opens up a treasure chest 
of opportunities for educators.
    Finally, Mr. Chairman, this fall, I am beginning a five 
year program at four Head Start sites. Researchers have found 
that the failure to develop abstract reasoning represents one 
of the most glaring deficits of the low income child. I 
believe, based on our previous findings, that enrichment 
programs featuring music instruction can provide these children 
with the opportunity to develop these skills and allow them to 
compete on a more equal basis with their middle income peers 
both in the United States and abroad.
    Mr. Chairman, we respectfully request that members of the 
subcommittee consider this research as you determine the scope 
and the character for funding and Federal support for science 
and for education. We urge you in your deliberations to include 
specific language that directs the Department of Education to 
fund continuing research in this important area of up to $2 
million, so that we can ensure optimal intellectual development 
for all our children, particularly the economically 
disadvantaged, who are so dependent upon our public education 
programs.
    Congressional support is essential for this research to 
have the necessary impact on education, so that school boards 
across the country are prompted to reevaluate unfortunate 
decisions to eliminate school music programs that hold so much 
promise for children's intellectual development.
    That concludes my testimony, and I thank you for this 
important opportunity. I would like to ask if you have any 
questions.
    [The prepared statement of Frances Rauscher follows:]

[Pages 1266 - 1273--The official Committee record contains additional material here.]


    Mr. Istook. Dr. Rauscher, I am tempted to get into Name 
that Tune. Understand, I grew up in a family that placed a very 
large emphasis on music. We were constantly singing and so 
forth. I thought we did it just for fun. I did not know it was 
part of developing us.
    I do have a sister who is an elementary school music 
teacher. I was in her classroom just before Easter, and we sang 
Peter Cottontail and did the Bunny Hop. I do not know if your 
research has covered the Bunny Hop, as far as positive 
benefits. But it was fun.
    We certainly appreciate it. Thank you, Dr. Rauscher.
    Ms. Rauscher. Thank you very much.

                              ----------                              

                                         Wednesday, April 23, 1997.

                                WITNESS

SUZANNE GEDANCE, ALLIANCE FOR EYE AND VISION RESEARCH

    Mr. Istook. Next is Suzanne Gedance. Thank you, and please 
proceed.
    Ms. Gedance. Thank you, Mr. Chairman and members of the 
committee.
    My name is Suzanne Gedance, I am Senior Vice President of 
Prevent Blindness America. I am here today to represent the 
Alliance for Eye and Vision Research, or AEVR, which is a 
coalition of organizations devoted to vision and the role that 
research plays in it.
    As I begin, I would like to thank this committee for the 
leadership that you have shown in the past several years in 
stabilizing the funding base for the National Institutes of 
Health. That is very important, and all of us in eye and vision 
research thank you very much.
    We have been talking about the members of your family, and 
the members of everyone's family depend on their eyesight and 
good vision. Unfortunately, 12 million Americans today suffer 
from some form of irreversible blindness, and as the population 
is changing, this number is going to grow significantly. That 
makes my job here today so awesome, because I represent such a 
large constituency.
    Today our Nation spends $38.4 billion every year on the 
direct and indirect costs associated with vision loss. That is 
what makes vision research such a good investment. Because if 
we can find ways to prevent and to treat and cure these 
diseases, this will free up the funds for other important uses.
    Our experts tell us now that the time is right, we are so 
close to making discoveries that we need to in order to 
successfully prevent the eye problems that I have been talking 
about. Here are the issues that I like to address.
    First, the funding for NEI has not kept pace with the other 
National Institutes of Health. It is 11 percent versus a 40 
percent increase. The way in which the funding has been 
calculated leads to a continuing disadvantage to the funding of 
eye research, just at a time when, as I mentioned, we are going 
to have more and more people who have the age-related eye 
problems.
    Secondly, NEI has a fabulous track record for scientific 
discovery. One of the things that you are certainly familiar 
with is a medical miracle is organ transplant. That happened 
because of the work that was done in corneal research. In 
addition, so much is happening now with isolating genes and 
eyes are a wonderful place, they are a wonderful test tube to 
look at the rest of the tissues of the body.
    Thirdly, NEI is one of the best investments that you can 
make. It is one of the most cost effective and efficiently 
managed institutes at NIH. The average cost of grants is 
significantly less. The people at NEI work very hard. Their 
workload is about twice what it is for the other National 
Institutes of Health. Their overhead is about half of what it 
costs in some of the other organizations.
    So we think NEI is a tremendous success story. We believe 
that it could be more successful if we have the funding that it 
needs to accomplish these things.
    The disease I would like to talk to you about today 
specifically is one that has all of us at Prevent Blindness 
American very concerned. It is called age-related macular 
degeneration. What it does is rob you of the vision in the 
center of your vision, it means that you cannot read, you 
cannot focus on fine things. This is associated with age. It is 
going to be a terrible problem to all of us in the years to 
come.
    It is the leading cause of blindness in people over 65. One 
in three people age 75 and over has it. We expect it will 
affect 6.3 million people by the year 2030.
    To bring this into focus, think of the difficulties of 
trying to operate by feel and touch when you have not been 
trained to do that. The discussion of the lady who made her 
sandwich out of cat food instead of tuna fish because she could 
not tell the difference, the humiliation of reaching into a 
bowl of cocktail sauce because you think it is cocktail nuts. 
You have to give up going out in public if you cannot have help 
sorting out what colors your clothing are. It really robs you 
of the quality of life and causes you to become dependent.
    NEI has already engaged in research focused on AMD, and all 
of us ask that they are able to expand this in time to help 
meet the needs that are confronting us.
    We ask that you double the NIH budget over the next five 
years, as proposed in House Resolution 83. It would require a 
15 percent increase in funding by fiscal year 1998. AEVR at 
minimum requests that you supporting funding for NEI in the 
amount of $362.7 million, as requested by the NEI Advisory 
Council, which would be a 9 percent increase above the level 
requested by the President in his budget.
    Thank you on behalf of all of us with eyes, and we 
appreciate your leadership.
    [The prepared statement of Suzanne Gedance follows:]

[Pages 1276 - 1284--The official Committee record contains additional material here.]


    Mr. Istook. Thank you very much, Ms. Gedance.

                              ----------                              

                                         Wednesday, April 23, 1997.

                                WITNESS

JOHN DURANT, M.D., FRIENDS OF CANCER RESEARCH

    Mr. Istook. Dr. John Durant, Friends of Cancer Research. 
Dr. Durant, welcome.
    Dr. Durant. Thank you very much for inviting us. I 
represent the Friends of Cancer Research, which is a group of 
people who are interested in increasing public awareness about 
the value and importance of cancer research. I am also the 
Executive for the American Society of Clinical Oncology, among 
whose members are 9,000 American physicians practicing oncology 
in the United States.
    I have listed in my written testimony some specific ideas 
which when they come to fruition will no doubt benefit a host 
of future cancer patients. In order to put that in context, 
though, I would like to go back into my own career. In 1963, 
when I was searching for a fellowship, of which there were not 
many in those days, I identified Memorial Sloan Kettering. The 
man who was to be my mentor, however, died of Hodgkin's disease 
during the spring of the year I began my fellowship.
    I was next involved as a public witness before 
Congressional committees in 1970 or so, advocating making 
cancer a national priority. I never dreamed at the time how 
personal my interest would become. By 1980, both my sister and 
my wife had developed cancer. My sister had a disease, chronic 
myelogenous leukemia, and she died several years ago after a 15 
year struggle.
    Now, my cousin has the same disease. However, in 1997, her 
chances of cure are 75 percent or so, because she is fortunate 
to have a perfect match in her brother, and will receive a 
transplant.
    My wife had breast cancer. Had we known then what we know 
today, she probably would have lived a lot longer, maybe even 
be cured. Our daughter would still have her mother.
    Now, this year at our annual meeting in Denver, to be held 
next month, we will honor Dr. Don Thomas, a Nobel laureate, for 
his contributions to the transplant technology that gives my 
cousin such a good chance of cure. We will also hear at the 
same meeting from Dr. Vokel Viel of Germany who will explain 
how his group obtained a 90 plus cure rate for advanced 
Hodgkin's disease, the disease that killed my mentor, and an 
outcome which we surely would not have anticipated or dreamed 
of in 1963.
    All of this puts in perspective what can happen if we go 
fast enough. What does going fast enough mean to us? It means 
that the ideas, one of which you heard from an earlier witness, 
need adequate funding. Adequate funding, we believe, is a 
minimum of the professional judgment budget, which has come 
down for the NIH. We would like to advocate for the 
proportional distribution of that increase to all of the 
institutes at the NIH, including specifically the National 
Cancer Institute.
    I am confident that the proper funding and execution of 
research, particularly clinical research, in which we are 
interested as a professional society, will bear the kind of 
fruit the American public is expecting. I thank you for the 
opportunity to speak with you.
    [The prepared statement of John Durant, M.D., follows:]

[Pages 1287 - 1293--The official Committee record contains additional material here.]


    Mr. Istook. Thank you very much, Dr. Durant. I appreciate 
your comments and I think my staff would like to be in touch 

with you on some things on this. I appreciate it.
                              ----------                              

                                         Wednesday, April 23, 1997.

                                WITNESS

LISA KAESER, FRIENDS OF NATIONAL INSTITUTE OF CHILD HEALTH AND HUMAN 
    DEVELOPMENT INSTITUTE
    Mr. Istook. The next witness is Lisa Kaeser from the 
Friends of NICHD Coalition, and the Alan Guttmacher Institute. 
Please, go ahead.
    Ms. Kaeser. Good morning. Thank you, Mr. Chairman.
    I am testifying today on behalf of the Friends of NICHD, a 
coalition of approximately 100 organizations that support the 
work of the National Institutes of Health, with a special focus 
on the National Institute of Child Health and Human 
Development. I would like to request, as the others have, that 
our full statement be included in the record.
    First and foremost, we would like to thank the subcommittee 
for its unflagging support for the NIH. While we realize that 
you are under tremendous pressure to divert precious funds 
elsewhere, we wholeheartedly agree that the physical and mental 
health and well-being of our Nation's people should remain a 
top Federal priority.
    NICHD's mission, to ensure the birth of healthy babies and 
the opportunity for each infant to reach adulthood and achieve 
full potential, unimpaired by physical or mental disabilities, 
clearly deserves the greatest possible support. To that end, 
the Friends of NICHD supports NICHD's professional judgment 
budget and respectfully recommends that NICHD receive $690 
million, a 9.3 percent increase in funding for fiscal year 
1998.
    NICHD's work, unusual in NIH for not focusing entirely a 
single disease or physiologic system, encompasses the whole 
span of human development. This progression can best be 
illustrated by the following examples from the Institute's 
research portfolio.
    One key component of the Institute's work is to increase 
public health through broad dissemination of its findings. A 
perfect example of NICHD's effective educational efforts is the 
now well-known Back to Sleep campaign. The campaign is a direct 
result of NICHD research that showed a clear link between 
infant sleep position and SIDS, sudden infant death syndrome, 
which is itself the sudden, unexplained death of an infant.
    By advising parents, care givers and health professionals 
to place babies on their backs to sleep instead of their 
stomachs, the campaign has accomplished a significant change in 
practice in only four years, resulting in a 30 percent 
reduction in SIDS.
    Another exciting advance is the development of a vaccine 
against hemophilus influenza type b, or Hib, until recently the 
leading cause of acquired mental retardation in the United 
States. Even with effective antibiotic treatment, 5 percent of 
those who contracted Hib died, and about 30 percent suffered 
permanent damage. The development of the vaccine, however, has 
led to a 95 percent reduction in Hib infection in the U.S. Last 
fall, the 1996 Lasker award, which is often referred to as the 
American Nobel, was awarded to NICHD scientists for its 
development.
    Over the last ten years, NICHD-led research has also 
concentrated on reading disabilities, the most common type of 
learning disability. Over the long term, reading disabilities, 
if undetected, can have severe ramifications for any child's 
future in the working world. Exciting new research has shown 
that simple tests can help to detect learning disabilities at 
an early enough stage for effective intervention.
    NICHD is also a primary funder of demographic, social and 
behavioral research on the structure of the American family. A 
new executive order just signed by President Clinton on Monday 
gives NICHD a leadership role in the Federal inter-agency forum 
on child and family statistics, which is directed to issue 
annual reports summarizing the well-being of the Nation's 
children and youth, data that will undoubtedly prove to be 
useful as we monitor the impact of welfare reform.
    Another study of urgent interest to the many working 
families in the U.S. is NICHD's long-term study on day care and 
its impact on children's development. The study underscores 
conclusions reached by other researchers that one of the most 
important positive influences over a child's early development 
is a rich and stimulating environment, and that that 
environment can be provided within either a day care setting 
and of course at home.
    I would like to end on a personal note that brought home 
for me just how important NICHD research is. Like all new 
parents, I have been appropriately exhorted to immunize our 
children. Although issued the usual warnings about possible 
side effects of vaccines, no one thinks it will happen to them. 
Then just two years ago, my infant son had one of the 
relatively rare reactions to the standard pertussis, or 
whooping cough vaccine. He went into shock, stopped breathing 
and had to be revived with CPR.
    The same vaccine research team I mentioned earlier has 
developed a new vaccine against pertussis that would have few, 
if any, of these side effects. Even though it is unlikely that 
my new baby daughter would have had the same reaction to the 
old vaccine, it is wonderful to know that parents no longer 
have to worry about whether they are doing the right thing in 
getting their child vaccinated. We cannot put a price tag on 
our peace of mind.
    In closing, I would just like to thank the subcommittee 
again for its support of NIH.
    [The prepared statement of Lisa Kaeser follows:]

[Pages 1296 - 1304--The official Committee record contains additional material here.]


    Mr. Istook. Thank you very much. I appreciate your sharing 
the circumstances with your young daughter. Thank you.
    Ms. Kaeser. Thank you.
                              ----------                              

                                         Wednesday, April 23, 1997.

                               WITNESSES

SANDRA H. WELCH
BERYL JACKSON, PUBLIC BROADCASTING SERVICES--PBS MATHLINE

    Mr. Istook. With our next witness, I am going to turn the 
Chair over to Congresswoman Anne Northup. The next witness is 
Sandra Welch of Public Broadcasting Services.
    Mrs. Northup [assuming chair]. Good morning, Ms. Welch. We 
are ready for your testimony.
    Ms. Welch. Great, thank you.
    I am Sandra Welch, Executive Vice President of Learning 
Services at PBS. For 30 years, I have been working directly 
with classroom teachers, helping them improve their teaching 
strategies in the classroom, in order to do the best job they 
can for their students. Starting 30 years ago, in Kentucky, as 
an elementary school librarian and then working for 20 years at 
Kentucky Educational Television, I have had a lot of experience 
in how you help teachers, particularly using new technology and 
telecommunication in the classroom.
    With me is Beryl Jackson. Beryl is a math teacher and 
supervisor with the D.C. Public Schools, currently on loan to 
PBS to work on this math demonstration project. Beryl and her 
colleague, Carey Bolster, sitting right back of us, are the 
only two full time professional staff members for this national 
project.
    We want to thank this committee for its past support of 
this project, and we want to point out today that it is an 
effective new model for how to train teachers across the 
country to be better math teachers. At the same time, we are 
training them how to use the new technologies and the new on-
line computer systems to improve learning.
    We are using the power of television with these videos that 
we are producing, and we are using the power of computers and 
on-line networks to reach teachers across the country with this 
new model.
    Beryl will now explain how it works and the impact we are 
having on math teachers.
    Ms. Jackson. Good morning. As a mathematics educator, I 
know first-hand what it is like to be a classroom teacher. I 
believe that there are few professions as rewarding as 
teaching, and I also believe that there are few professions as 
demanding as teaching.
    As a teacher, it was essential that I was in my classroom 
every day. But at the same time, I needed to keep abreast of 
the content and pedagogy that would make me a better teacher.
    Therefore, my professional learning cycle began at the end 
of the day on Saturdays, some Sundays and always in the summer. 
Once they were over, I was once again left in my classroom 
alone to mirror these instructional practices. There was no 
support and there was no network. I really did not know what a 
good lesson was, because I never had the opportunity to observe 
outstanding teachers teach.
    What I have just described is essentially the traditional 
model for professional development. These sentiments could be 
echoed from across this country. However, with your support, 
PBS Mathline now provides teachers with an alternative approach 
to this professional development. These Mathline videos provide 
teachers with numerous opportunities to visit and revisit 
classrooms across this country where teachers and students are 
engaged in rigorous and exciting teaching and learning 
experiences.
    These standards based lessons spark discussions by teachers 
in their facilitated on-line learning communities. In these 
communities, teachers are provided ongoing support as they 
strive for excellence in mathematics education.
    Mathline, I think, can best be described as teachers 
helping teachers teach. Having already reached over 4,000 
teachers in 39 States, and having impacted over 780,000 
students, Mathline is unparalleled professional development 
which takes advantage of telecommunications technology. It is 
uniquely different, in that it is the only professional 
development program of its kind which allows teachers to 
communicate any time, any place, in year-long learning 
communities using telecommunications based technology.
    As we move into the next century, it is imperative that we 
prepare teachers to be able to use technology as a tool for 
their learning, so they can equip their students to do so as 
well. I think in the words of one of our teachers, Mathline is 
the best professional development experience they have ever 
had.
    Ms. Welch. We are respectfully requesting $2.25 million in 
fiscal year 1998 to continue this project. Those funds will be 
used to do more extensive training, helping teachers understand 
how to use computers, how to get on-line. We will be using 
those funds to produce additional videos that provide the 
content and the understanding on how to teach with the new math 
standards. We will be using those funds to assure that we are 
in all 50 States in the future.
    Finally, I would like to say that we would be happy to come 
back to this committee in the future if you would like a hands-
on demonstration. We would be happy to put these computers in 
your hands, let you get on-line with teachers back in your home 
districts who are enrolled in this program so you could hear 
directly from them.
    In the meantime, we would also be glad to visit any of your 
offices and give you a personal one-on-one demonstration as 
well. If you have any questions, we would be glad to answer 
them.
    Thank you.
    [The prepared statement of Sandra Welch and Beryl Jackson 
follows:]

[Pages 1307 - 1315--The official Committee record contains additional material here.]


    Mrs. Northup. Thank you for your presentation. I think we 
are out of time, but I appreciate it. As a former math teacher, 
it is particularly interesting to me.
    Ms. Welch. Wonderful. Thank you.

                              ----------                              

                                         Wednesday, April 23, 1997.

                                WITNESS

JOSEPH W. KENMITZ, WISCONSIN REGIONAL PRIMATE RESEARCH CENTER

    Mrs. Northup. Dr. Joseph Kenmitz, Senior Scientist and 
Interim Director of the Wisconsin Regional Primate Research 
Center. Welcome, and I know you are testifying on the Research 
Center.
    Mr. Kenmitz. Good morning, and thank you for this 
opportunity.
    In fact, I am testifying on behalf of all seven of the 
regional primate research enters, which are part of the 
National Center for Research Resources.
    The seven regional primate research centers are located at 
distinguished universities in the States of California, 
Georgia, Louisiana, Massachusetts, Oregon, Washington and 
Wisconsin. They receive their support as part of the 
comparative medicine program of NCRR.
    I am proud to have served at the Wisconsin Regional Primate 
Research Center for 20 years. I welcome the opportunity to 
provide this testimony to this committee this morning.
    Congress acted with great wisdom and foresight in 1960 to 
establish the National Primate Center program by appropriating 
funds to build the seven centers we have today. In the nearly 
40 years since their establishment, it is increasingly clear 
that this was an excellent investment.
    These centers provide specialized and unique scientific 
capabilities not available through any other program within the 
Department of Health and Human Services. For a variety of 
reasons, including the ever-increasing complexity and 
sophistication of research questions and methodologies, the 
primate center program is even more important today than when 
the centers were established.
    Well over 1,000 investigators depend on the primate centers 
to conduct research supported by the National Institutes of 
Health, as well as other governmental and private sector 
sources. These investigators are not only those based at 
primate centers, but also include regional, national and 
international scientists who rely on the resources and 
expertise resident at primate centers to conduct their 
research.
    The importance of non-human primates to progress in 
biomedical research cannot be overestimated. These animals are 
the closest surrogates for our own species, sharing more than 
90 percent of the genetic makeup with humans. This close 
genetic similarity results in marked similarities in anatomy, 
physiology and behavior, that make these animals outstanding 
models, in some cases the only appropriate choice for 
understanding human health and disease processes.
    Non-human primates are often the vital link between basic 
research and human application. Examples of significant 
accomplishments resulting from primate research abound in the 
fields of neuroscience, reproduction and developmental biology, 
infectious diseases, among others. Recent advances at the 
regional primate research centers include increased 
understanding of the pathobiology of AIDS and the development 
of vaccines for protection against this disease. Indeed, the 
most prevalent model of AIDS, simian immunodeficiency virus, 
was established a primate centers.
    Our center and others are now also engaged in research to 
prevent the AIDS virus from being transmitted from HIV infected 
mothers to their babies.
    Other advances include better understanding the 
fertilization and early prenatal development. Another example 
of a research area where the non-human primate offers unique 
benefits because of similarities to humans and differences from 
other laboratory species.
    Non-human primate research is also leading to enhanced 
knowledge of the genetic basis of disease and immunity, of the 
development of obesity and its complications, such as diabetes 
and hypertension, and of specific women's health issues, such 
as endometriosis, polycystic ovary syndrome, and of changes 
during and after menopause.
    Older people represent the fastest growing segment of our 
population. People are living longer and there is a need to 
improve the quality of life of older individuals. Efforts are 
underway at our primate center and elsewhere to uncover the 
basic processes of aging in primates and to develop new 
approaches to postpone the development of age related 
infirmities, such as cancer, osteoporosis, loss of muscle mass, 
impaired vision, as you have heard about earlier, and other 
neurological problems.
    We have promising preliminary evidence to suggest that diet 
can reduce the incidence, delay the onset and lessen the 
severity of some metabolic diseases associated with aging. New 
hypothesis regarding the mechanism of these beneficial effects 
of reduced caloric intake are now being tested.
    In spite of their productivity, the infrastructure at the 
regional primate research centers has had to cope with 
basically static base operating budgets. At one time, the 
support for the primate centers covered operating costs and 
research projects conducted at the centers. Today, these base 
grants cover only a portion of the operating expenses, and 
little or none of the research costs. The research projects 
themselves are now primarily funded through a rigorous system 
of peer review at NIH.
    The sum of these competitively awarded grants exceeds the 
size of the base grants by more than five fold at some centers, 
and requires resources exceeding those available in terms of 
animals, laboratories and support functions. We need additional 
operating funds in order to meet expeditiously the operational 
needs of the biomedical research community.
    The use of primates in research----
    Mrs. Northup. Doctor, can you summarize the rest of your 
remarks? We are almost a minute over, and there are other 
witnesses.
    Mr. Kenmitz. I am sorry, yes.
    I also wanted to specifically mention that the primate 
centers are now nearly 40 years old, and some renovation and 
replacement of facilities is becoming an urgent issue. The 
Congress reinstated construction authority in 1993 for the 
first time since 1969, and we are grateful for this support 
during the last few years.
    There is an indication in the President's budget that the 
next year's construction funding to the National Center for 
Research Resources is to be reduced by 80 percent, and we ask 
that Congress restore funding to at least last year's level.
    Thank you very much.
    [The prepared statement of Joseph Kenmitz follows:]

[Pages 1319 - 1326--The official Committee record contains additional material here.]


    Mrs. Northup. Thank you very much.

                              ----------                              

                                         Wednesday, April 23, 1997.

                                WITNESS

ANTHONY COLE, HAYMARKET HOUSE

    Mrs. Northup. Next, we have Anthony Cole. He is the Vice 
President of Haymarket House, and he is here representing 
Haymarket House.
    Mr. Cole. Good morning. Thank you, Madam Chair, for 
providing Haymarket House with the opportunity to present 
testimony to your committee again this year.
    My name is Anthony Cole, and I am Vice President of 
Haymarket House. We are a comprehensive substance abuse 
treatment center on the near west side of Chicago. We were 
founded in 1975 by Monsignor Ignatius McDermott. We have 
developed several unique programs to address the needs of high-
risk females and the non-violent drug offender. Haymarket 
currently offers comprehensive and integrated treatment 
services to an average of 13,000 clients annually. We are the 
largest drug abuse treatment center in the City of Chicago and 
the third largest in the State of Illinois.
    I present this testimony this year to provide a status 
report on Haymarket's ongoing efforts to be innovative and 
effective in our programming. We at the Haymarket House believe 
that the drug abuse prevention and treatment community can and 
should do a better job of servicing their clients using limited 
available Federal resources.
    In order to do a better job, however, Federal policy 
related to prevention and treatment must become coherent and 
better coordinated. The treatment community needs to be 
encouraged to develop and define what is called a continuum of 
care. This continuum is the integration of drug abuse 
prevention, drug abuse treatment, health services, child care, 
parent training, vocational education and job placement. This 
integration of services enables treatment centers to improve 
their prevention and treatment services and consequently, to 
increase the rate of savings to taxpayers.
    This continuum of care allows the treatment community to 
help more addicts become more productive members of society 
more quickly. One of the greatest barriers that high-risk women 
currently face, when seeking substance abuse treatment, is a 
lack of child care. Few treatment facilities approach women as 
mothers as well as individuals, or deal with matters related to 
the well-being of their children.
    Haymarket House is pleased that earlier this month, CSAT 
issued a GFA to their RWCs, as well as their PPWs grantees 
requesting applications for supplements to support the 
enhancement and/or expansion of child care and children's 
related services.
    Haymarket House believes that there is a direct correlation 
between the comprehensive nature of treatment and reduction in 
recidivism rates. Accordingly, we have incorporated a 
preventive health services clinic into our treatment programs. 
Our clients are faced with a variety of medical and health 
related problems which impede their treatment progress. Through 
the establishment of an on-site clinic in partnership with a 
federally qualified health center in Chicago, we have been able 
to develop our ability to help more addicts become healthy and 
productive members of society.
    We urge the committee to encourage the CDC and HRSA to 
continue to work with community based organizations that can 
aid them in controlling the spread of infectious diseases, the 
reduction of chronic illnesses and the reduction of risk 
factors through the prevention and primary health care.
    Haymarket House is also looking to expand the vocational 
education and job placement services we offer our clients. Once 
they have completed treatment and have begun to address other 
medical and health related problems, the one impediment that 
they face is a lack of employment opportunities.
    Haymarket is looking to collaborate with the Job Corps 
Center which is scheduled to open in Chicago next year in 
developing an outpatient demonstration project. We ask that the 
committee encourage the Department of Labor to consider working 
with community based organizations in this innovative way.
    As the treatment community works to adapt to meet the 
challenges of the reality of reduced Federal resources, we ask 
that Congress require executive branch agencies to better 
coordinate their programs and to allow local treatment centers 
such as Haymarket House to be more innovative in their use of 
Federal dollars.
    We are pleased to announce that several national 
organizations, such as NASADAD and Legal Action Center are 
working together to ensure the integration and coordination of 
treatment, prevention, education and research activities. 
Haymarket House trusts that this committee will seriously 
consider any draft report language these groups put forward.
    We are also aware that some States are experiencing 
difficulty in obligating treatment funding due to the setasides 
that are found in the SAMHSA authorization. Haymarket looks 
forward to working with the authorizers and the appropriations 
committees to address this concern.
    In closing, Haymarket requests that you help the treatment 
community create a continuum of care for individuals with drug 
abuse problems so that those individuals can address their 
problems more quickly and completely. Those problems include 
drug abuse and its biological, psychological and social 
problems, family disintegration, lack of education and lack of 
employment opportunity. The continuum of care requires the 
involvement of a variety of Federal agencies, most importantly 
the three Departments under this subcommittee's jurisdiction.
    Haymarket House appreciates the opportunity to present this 
testimony this year. Thank you.
    [The prepared statement of Anthony Cole follows:]

[Pages 1329 - 1336--The official Committee record contains additional material here.]


    Mrs. Northup. Thank you very much.

                              ----------                              

                                         Wednesday, April 23, 1997.

                               WITNESSES

JOSEPH McNULTY
HARRY ANDERSON, HELEN KELLER NATIONAL CENTER FOR DEAF-BLIND

    Mrs. Northup. Next we have Mr. Joseph McNulty, who is the 
Executive Director of the Helen Keller National Center. 
Welcome, Mr. McNulty.
    Mr. McNulty. Good morning. I am Joe McNulty, the Director 
of the Helen Keller National Center. I have submitted some 
written testimony. To speak on behalf of the center today is 
Mr. Harry Anderson.
    Mr. Anderson. Good morning.
    My name is Harry Anderson, and I am a deaf-blind consumer 
and a professional. My job is a guidance counselor at the 
Florida School for the Deaf and the Blind. I would like to 
speak on behalf of the Helen Keller National Center. How the 
Center and its national technical assistance consortia have 
provided a lot of assistance to the deaf-blind consumers, their 
families, the professionals, the services agencies in the State 
of Florida.
    Florida is just one State as an example how Helen Keller 
National Center has provided guidance, training, information, 
technology for deaf-blind people in respective States. The 
important thing is that employment opportunities and improved 
living situations as a result of technology has enabled people 
like myself who can use the high technology of an FM 
transmitter, which Mr. McNulty will show you. This is an FM 
system which enables many hard of hearing blind people to 
communicate, to hold jobs.
    I would like to give an example of how an inter-agency 
cooperation is happening in Florida. With the help of the 
southeastern region representative by the name of Susan Brooks, 
we were able to pull together all the different service 
agencies in the State of Florida. Also, we invited the area 
director of the NTAC to come to Florida about a month ago to 
help the inter-agencies such as the Division of Blind Services, 
Vocational Rehabilitation, Development of Services, Counsel on 
the Aging and Center for Independent Living, to name a few, to 
get together and determine how to provide services to deaf-
blind consumers and their families in the State of Florida.
    Also, the importance of the fact that Helen Keller National 
Center has asked for $8.5 million, and the committee is willing 
to give $7.5 million. We need the extra million to do a lot of 
research in the area of technology, training, and to continue 
providing services. Also, we have to remember that we all are 
living longer, and that we are having an increased number of 
deaf-blind senior citizens, who will be needing assisted living 
and support.
    In Florida, we have the largest number of deaf-blind senior 
citizens. I have been receiving quite a few requests from deaf-
blind people outside of Florida who are searching for a place 
to live where they can receive assisted living.
    There is one important thing I do know: that Congress is 
encouraging the shifting of the responsibility from the Federal 
Government to the State governments. This is why I strongly 
encourage and strongly ask you to please continue to fund the 
Helen Keller National Center. The Helen Keller National Center 
is the base, the foundation upon which services to deaf-blind 
consumers in every State in the union can provide services to 
deaf-blind.
    Mr. Chairman, members of the subcommittee, I thank you for 
the opportunity to speak before you this morning.
    [The prepared statement of Harry Anderson follows:]

[Pages 1339 - 1345--The official Committee record contains additional material here.]


    Mrs. Northup. Thank you very much.
    I am sorry that the hearing only has five minutes left in 
it. We are going to have to adjourn until 2:15 this afternoon.
    However, I am going to exercise the prerogative of the 
Chair in the few final minutes to skip to John Aquilino. He has 
a young child here, and I feel that it would be best if we 
could go on and give him and the young child an opportunity to 
testify, so that they do not have to be held over.

                              ----------                              

                                         Wednesday, April 23, 1997.

                               WITNESSES

JOHN D. AQUILINO, JR. AND JOHN Z. AQUILINO

    Mr. Aquilino. I thank the Chair for your patience.
    We are here basically to dispel a major myth. The myth is 
that heart disease strikes people my age.
    My son, John, is like 32,000 other newborns who are born in 
this country every year with a major heart defect. Twenty-seven 
hundred of these babies die before their first birthday.
    He is seven years old, he plays tee ball for St. Jerome's 
School in Hyattsville. He is the oldest patient at Washington 
Children's Hospital with this condition, hypoplastic left heart 
syndrome. His left ventricle was not developed prior to birth.
    At two days old, he spent six hours in Children's Hospital 
emergency room. Before he was able to be stabilized and 
diagnosed, his heart and lungs shut down twice. He has had four 
major surgeries, three major open heart surgeries before he was 
four years old, and a half dozen cardiac catheterizations.
    I am here basically to ask, using American Heart 
Association figures, that the National Institute for Heart, 
Lung and Blood be funded at $1.65 billion, including $834 
million for the heart program. They use terms like constant 
dollars and absolutely dollars. I do not know what they mean, 
and I really do not care. What I care about is love for my son, 
and the biomedical research using animals that gave me my son. 
I would love to see the day when, using his own DNA, he can 
have a full functioning heart of his own. Thanks for that 
research.
    The hardest question anyone could ask a new parent was one 
asked me and my wife the second day after Johnny was born, and 
that is, do we want him to live. It was not hard to answer that 
question. Yes, I want my son to live. And I want children and 
fathers and mothers from Hyattsville, Maryland to Harari, 
Zimbabwe and all points in between to live.
    The work you do here will enable other parents the precious 
and priceless chance to hear an infant's first cry, and a seven 
year old's shouted greeting, Dad's home. From the bottom of my 
heart and the love I have for my son, I want to thank you for 
allowing women and men of science to be able to do research 
that gives the gift of life to children like John, and make 
this kind of research America's number one priority.
    Thank you.
    [The prepared statement of John Aquilino follows:]

[Pages 1347 - 1352--The official Committee record contains additional material here.]


    Mrs. Northup. Thank you.
    And welcome, Johnny. Is this your first time to Washington?
    Mr. Aquilino. First time to see his dad cry.
    Mrs. Northup. First time. Well, it is a special day for you 
and it is a special day for us, too. I hope you have a nice 
visit here. Thank you very much.
    At this point, I am going to have to recess the committee. 
We are going to recess at this time. We are unsure when it will 
restart. Thank you very much.
    [Recess.]
                              ----------                              

                                         Wednesday, April 23, 1997.

                                WITNESS

HON. JOHN McCAIN, A UNITED STATES SENATOR FROM THE STATE OF ARIZONA, 
    NATIONAL PARKINSON'S FOUNDATION

    Mr. Young [assuming chair]. We will come to order. I would 
like to make an announcement on behalf of the Chairman, who 
unfortunately is not able to be here because of his problem 
with his back this afternoon.
    As we begin the afternoon hearings, I wanted to remind the 
witnesses of two new provisions in the rules of the House. In 
addition to the written statement, non-governmental witnesses 
must submit a curriculum vitae and a statement of Federal grant 
or contract funds they or the entity they represent have 
received.
    If there are any questions concerning the applicability of 
this provision, or questions as to how to comply, please 
contact the subcommittee staff.
    Also, there is a very long list of witnesses for the 
afternoon. The schedule is very tight, and I would ask, not 
referring to you, Senator, but after you, that we will abide by 
the five minute rule as closely as we possibly can. I would 
remind all the witnesses that their entire statements will be 
placed in the record and that we would ask for a summary.
    Now I am very proud to introduce a former colleague in the 
House and now a member of the United States, and if I could 
divert just a second, John, Senator McCain is well known. Many 
years ago, when he returned home from Vietnam, after many years 
of imprisonment, I had the great honor of being on the 
welcoming committee that met you when you first stepped foot on 
American soil. It was a very proud moment for me, and I think a 
very exciting moment for you. You did well throughout your 
tremendous career in the military, and you have done well 
throughout your tremendous career in the United States Congress 
and Senate. You I recognize.
    Senator McCain. Thank you very much, Mr. Chairman. I should 
mention that was nearly 25 years ago. We are getting a little 
long in the tooth, but I still remember it with great emotion. 
I would also like to thank you for your consistent support of 
the POWs, all during the time that I was away. We are very 
grateful for it, you and so many others.
    Mr. Chairman, I will be brief, because I do realize that 
you have a long list of witnesses, and some far more important 
than me. I would like to thank you and the committee for 
allowing me to make a few brief remarks about a very cruel 
disease, Parkinson's. I preface my remarks, Mr. Chairman, 
noting that I was the most mediocre of high school and 
collegiate boxers that has probably ever graced the Naval 
Academy and the collegiate boxing sport. So that also has 
increased my admiration for the outstanding American and 
magnificent man that we all know about.
    I have watched with admiration the courageous efforts of 
Mohammad Ali, since he stepped forward to become a valiant 
crusader on behalf of the Parkinson's community. Many were 
surprised by Mohammad's willingness to take his fight with 
Parkinson's public. I was not. I was not surprised that 
Mohammad Ali has again stepped into the public arena with his 
usual determination to win another fight.
    This time, he is fighting to find a cure for Parkinson's 
disease for himself and for the 1 million Americans afflicted 
with this disease.
    Mr. Chairman, you know the ravages of the disease. You know 
how terrible it is. The people here are testimony to that. I 
would also like to just mention that this bill is named in 
honor of our dear friend and colleague, Mo Udall, a man who 
reached out to me in friendship and love. And I watched him, as 
we all did, wage this battle, this losing battle that he fought 
with courage and determination, just as this great and 
magnificent American next to me did.
    I love Mo Udall, as we all do, those that knew him on both 
sides of the aisle, and we watched with sorrow as he became 
more and more incapacitated by it. There is a cure for the 
disease. We need to find it. We need to give it the sufficient 
funding. I believe that we can and will. We were able to get 
this bill through the Senate last time, as you know, Mr. 
Chairman. I believe that this time, we cannot fail, not only 
those who are afflicted with it, but future generations who 
will be, unless we find a cure for this debilitating disease.
    Mr. Chairman, I want to thank you and the other members of 
the committee for your kind attention. I want to thank you for 
your commitment that we all share to doing what we have to do, 
and that is fulfill the proper role of Government to try to rid 
our society and the world of this terrible scourge.
    Thank you, Mr. Chairman.
    [The prepared statement of John McCain follows:]

[Pages 1355 - 1364--The official Committee record contains additional material here.]


    Mr. Young. Senator, thank you very much for being here 
today, and I would say to you that my wife is in the audience, 
and in her family we have several incidences of Parkinson's. We 
have a very strong personal interest in this issue, as well as 
recognizing the need to deal with this, along with many other 
terrible, terrible diseases that afflict the human population.
    Senator McCain. Thank you.
    Mr. Young. Were you going to introduce the Champ?
    Senator McCain. Could I ask Anne to do that, please?
    Mr. Young. All right, I understand that Ms. Northup will do 
that. Mrs. Northup is at the end of the table, and we call on 
her now.
                              ----------                              

                                         Wednesday, April 23, 1997.

                               WITNESSES

LONNIE ALI, AND MUHAMMAD ALI, NATIONAL PARKINSON'S FOUNDATION

    Mrs. Northup. Mr. Chairman, it gives me a great deal of 
pleasure to introduce one of our favorite sons of Louisville, 
Kentucky. He is known to float like a butterfly and sting like 
a bee, he is the most popular man to have ever stepped into the 
boxing ring. Of course, he needs no introduction, he is 
Muhammad Ali.
    He was born Cassius Clay, the story is that somebody stole 
his bicycle downtown. He reported it to a policeman who 
happened to run the local boxing recreation center. He invited 
Cassius Clay to become part of that, and the rest is history. 
He won the Golden Gloves in Kentucky six times. He went on to 
become the Olympic champion in 1960.
    In 1964, he became the heavyweight boxing champion of the 
world when he defeated Sonny Liston. Soon after that, he became 
part of the Nation of Islam. He turned down his induction into 
the armed forces and he was stripped of his title when he lost 
a court battle and was convicted of violating the Secret 
Service Act.
    That was overturned. He came back in 1970, known as 
Muhammad Ali, serving as an example to so many people, regained 
his heavyweight championship by knocking out George Foreman in 
1974. He is beloved in our community and across this country. 
He has served as the example to so many children and so many 
athletes. My own sister is a member of three Olympic teams. I 
know the affection and the respect that so many Olympians have 
for Muhammad Ali.
    There is a reason, Mr. Chairman, that he was invited to 
light the torch at the Olympics this year. It is because to all 
Olympians, he has served as such a wonderful example.
    I ask you to join me in welcoming him before our committee 
today.
    Mr. Young. Well, Champ, we do welcome you to the committee. 
We are very, very pleased and proud to have you here. We would 
be happy to hear anything that you have to say.
    Mrs. Ali. Mr. Chairman and members of this committee, my 
name is Lonnie Ali. I am accompanied by my husband, Muhammad 
Ali, who I am sure needs no introduction.
    The fact that I am the one speaking to you this morning and 
not Muhammad is one of the principal reasons that we are here 
today. I am sure all of you know that Muhammad suffers from 
Parkinson's disease, a progressive neurodegenerative disorder 
that has robbed him of one of his most prized functions, his 
voice and the ability to clearly speak with resonance.
    I believe all of you remember Muhammad's pre-Parkinson's 
days, when he moved millions with his vibrant voice and his 
poetic expression. In fact, Muhammad was so vocal that he was 
dubbed, the Louisville Lip.
    Shortly after joining the professional ranks of boxing, my 
experience as a Parkinson's caregiver has given me greater 
understanding about this disease and how it can devastate not 
only its victims, but also family and friends as well. Thanks 
to Muhammad and the National Parkinson's Foundation, I have had 
the opportunity to share my story as a caregiver with hundreds 
of other Parkinson's support groups.
    More importantly, they have had the opportunity to share 
with me their own personal stories of economic and emotional 
tragedy and hardship this terrible disease has brought them. In 
the course of our travels, I have met hundreds of Parkinson's 
patients, some worse off than Muhammad, and some not as 
affected. Muhammad and I have come away from these experiences 
with the resolve to help in any way we can to advance the 
research that will hasten the cure of Parkinson's disease.
    Muhammad and I are committed to participate in that focus 
on raising funds for medical research and tonight, Muhammad is 
being honored at such an event in Washington that is being 
sponsored by the Capital Chapter of the National Parkinson's 
Foundation, chaired by your colleague, Joe McDade, who also 
suffers from Parkinson's disease.
    Our special guest will be Senator John McCain, and I would 
like to extend a personal invitation to each of you to join us 
tonight.
    As you will hear from Mr. Emilio Alonso-Mendoza, Executive 
Director of the National Parkinson's Foundation, the money 
raised goes to support some of the finest Parkinson's research 
in the world. I can tell you first-hand, more is needed. The 
resources of the National Institutes of Health cannot be 
matched by private philanthropy. NIH, whose appropriations your 
committee approves, is supporting a large amount of the 
Parkinson's research, but not enough, considering the research 
opportunities currently at hand.
    I have been advised by some of the top Parkinson's 
researchers that a significant infusion of Federal funds 
allocated to Parkinson's research will surely hasten the cure 
that Muhammad and thousands of others could personally benefit 
from. Please consider that fact when you mark up this year's 
appropriations bill.
    Even more importantly, I want to urge that you focus on the 
Morris K. Udall Parkinson's Research Bill, which authorizes 
$100 million for Parkinson's disease research in the next 
fiscal year. Muhammad and I are asking each of you to become a 
co-sponsor of this legislation, which was just reintroduced 
only two weeks ago. When it is enacted into law, which it will 
be, appropriate the funds that it calls for, so that we can rid 
ourselves of this devastating illness.
    Before I finish my remarks, I would like all of you to know 
that Muhammad was unwilling to speak out and help in this fight 
to conquer Parkinson's disease until recently, when it became 
apparent to him that he might be able to make a difference. I 
think you will all agree that he has.
    Please consider our request and plea for your help. Thank 
you, Mr. Chairman, for providing us the opportunity to appear 
before you today, and thank you, committee members.
    [The prepared statement of Muhammad and Lonnie Ali 
follows:]

[Pages 1368 - 1370--The official Committee record contains additional material here.]


    Mr. Young. Thank you very much, both of you, for being here 
today, and the tremendous work that you do for this cause.

                              ----------                              

                                         Wednesday, April 23, 1997.

                               WITNESSES

LARRY HOFFHEIMER, NATIONAL FOUNDATION FOR BRAIN RESEARCH
EMILIO ALONSO-MENDOZA, NATIONAL PARKINSON'S FOUNDATION
MORGAN DOWNEY, NATIONAL COALITION FOR RESEARCH IN NEUROLOGICAL 
    DISORDERS
DANIEL PEREZ, FHS SOCIETY

    Mr. Young. I think before we go to the members for 
questions, we will hear from the rest of the panel. I would 
like to introduce Larry Hoffheimer, Executive Director of the 
National Foundation for Brain Research, and ask that you would 
proceed and introduce the members of your panel that are here.
    Mr. Hoffheimer. My name is Larry Hoffheimer.
    Mr. Young. You are from Florida.
    Mr. Hoffheimer. Sometimes I am in Florida, when it is cold 
up here. Unfortunately, I have to be both places.
    I would like to introduce the remainder of the panel here. 
On my immediate right is Emilio Alonso-Mendoza, the Executive 
Director of the National Parkinson's Foundation, who will tell 
us about some of the good work NPS is doing and why your 
support is needed to increase Parkinson's research.
    Then to my right even further is Morgan Downy, who is the 
Executive Director of the National Coalition for Research and 
Neurological Disorders, which is a coalition of many 
neurological groups, all seeking increases in neurological 
research funding. To his right is Mr. Daniel Perez, the head of 
the FHS Society, who is going to make a special plea for the 
needs of his organization.
    Again, on behalf of the entire panel, and particularly the 
National Parkinson's Foundation and the Alis, we want to thank 
this committee for the courtesies it has extended to us today. 
Thank you, Mr. Chairman.
    Mr. Young. Are there any other members of your group that 
would like to----
    Mr. Hoffheimer. Yes, Mr. Alonso-Mendoza would like to make 
a statement.
    Mr. Mendoza. Thank you.
    Mr. Chairman and members of the distinguished committee, my 
name is Emilio Alonso-Mendoza, and I am the Executive Director 
of the National Parkinson's Foundation, which is headquartered 
in Miami, Florida. It is indeed a pleasure and an honor to 
appear before you today to share with you my most fondest 
dream, and that is to find a cure for Parkinson's disease.
    As you heard from Muhammad through his lovely and 
articulate wife, Lonnie, we are indeed on the threshold of 
finding a cure for this terrible disease, which is robbing so 
many people of their ability to perform their daily functions 
of life.
    The National Parkinson's Foundation was founded more than 
40 years ago in Miami, Florida, by one of our Nation's truly 
great philanthropic pioneers. Her name was Mrs. Jean Levy. Her 
husband was afflicted with Parkinson's. Its mission has 
remained unchanged throughout the years, and that is to raise 
medical funds from public philanthropy and fund the best 
Parkinson's research by the most eminent Parkinson's 
researchers throughout the world. Until the cause of 
Parkinson's is found, we are dedicated to improving the quality 
of life for both Parkinson's patients and their caregivers.
    Beginning with a single research center in Miami, the 
National Parkinson's Foundation now supports 50 centers in 11 
countries. Thirty-five National Parkinson's Foundation centers 
of excellence are located in the United States. We spent 
approximately $5 million this past year on Parkinson's research 
and plan to spend more this coming year.
    All of our research is thoroughly peer reviewed by our 
scientific advisory board, which meets in closed session every 
year. This board is composed of some of the most distinguished 
scientists familiar with Parkinson's disease and other 
neurodegenerative disorders.
    Let me give you two other examples of ways in which we 
identified the best research. You may recall last year an NIH 
research team headed up by Dr. Mikhail Polymoropolous of the 
NIH Center for Human Genome Research. He announced the 
discovery of a site of a gene that is believed to have caused 
Parkinson's disease in a large Italian family that had 
experienced a high incidence of Parkinson's disease.
    Because of limited Federal resources, the National 
Parkinson's Foundation met with Dr. Zach Hall, Director of the 
National Institute of Neurological Disorders and Stroke, and 
with Dr. Polymoropolous. We advised him that we wanted to 
hasten the pursuit of this line of research. The result was 
that the National Parkinson's Foundation agreed to provide them 
with $515,000 in grants to enable them to continue their gene 
research.
    We also met with Dr. Hall, whose institute allocates most 
of the Federal funding for Parkinson's disease research, who 
advised us that there were excellent Parkinson's research 
applications that would not be funded because of insufficient 
funds. We asked Dr. Hall to refer these excellent research 
candidates to the National Parkinson's Foundation, and they are 
being considered for bridge grants, pending their refunding at 
future times.
    This assistance will allow the research investigators to 
continue their good work.
    I have said enough about the good work conducted by my 
organization. But what I do want to focus on, however, is the 
need for additional Federal resources to help in this fight. My 
scientific colleagues tell me that with substantial increases 
in Parkinson's research funding from the NIH, we indeed will 
find a cure sooner. They also advise me that we are on the 
threshold of brave new discoveries that are in desperate need 
of funding now.
    You, as members of the appropriations committee, have the 
awesome responsibility of deciding what areas of medical 
research get more funds and what areas get less. I certainly do 
not envy you in this challenging task. However, I truly believe 
that the case for a dramatic increase in Parkinson's disease 
research funding can and has been made and I would be pleased 
with you to consider it.
    Finally, and most importantly, all of you have followed the 
Morris K. Udall Parkinson's Research Bill, named after your 
former colleague, who currently suffers severely from this 
disease. It passed the Senate by unanimous vote last year, and 
received co-sponsorship by more than one half of the House of 
Representatives. Of course, we are in another Congress and the 
process has begun anew.
    The Udall bill was reintroduced just two weeks ago by 
Congressmen Upton and Waxman, and by Senators McCain and 
Wellstone. That bill authorizes $100 million next year for 
Parkinson's research, up from the currently budgeted $28 
million. I and my associates at the National Parkinson's 
Foundation are and will continue to work to see this bill's 
enactment. After that, look to this distinguished committee to 
appropriate the necessary funds that will truly hasten the cure 
of this terrible disease.
    I would like to reiterate that it is estimated that there 
are 1 million people with Parkinson's disease. That is 1 
percent of the population over age 65. Currently, the Federal 
Government spends about $5 billion a year caring for them. That 
is $5,000 per person.
    Patients, physicians and caregivers are universally 
dissatisfied with what that money buys, which is 
hospitalization, custodial care, and institutionalization. It 
is estimated that for every Parkinson's disease patient, there 
are 10 who will develop the disease if they live long enough.
    What good will it do if we conquer cancer and we banish 
heart disease and stroke if 10 percent of our population over 
65 years develops Parkinson's disease and another 10 percent is 
consigned to caring for them? If we increase our funding for 
Parkinson's disease from $28 million to $100 million, that is 
to say, only $100 per Parkinson's disease patient, I believe 
that within five years we will abolish the disease.
    This is great news, because I am in this fight for very 
personal reasons. My mother was afflicted with Parkinson's. She 
was misdiagnosed for a very long time. We had all the resources 
in the world to take care of her, and we could do nothing.
    I do not want it for myself, but I really want it for my 
children. I hope that I can look at them in the face one day 
and say that this group and these people sitting around me 
joined together in a universal fight and beat this disease that 
was once called Parkinson's.
    Thank you very much for allowing me to appear before you 
today. I respect what you are doing and I wish you Godspeed.
    [Clerk's note.--Information required pursuant to clause 
2(g)(4) of Rule XI of the Rules of the House of Representatives 
was not received from this witness or from an entity 
represented by this witness]
    [The prepared statement of Emilio Alonso-Mendoza follows:]

[Pages 1374 - 1379--The official Committee record contains additional material here.]


    Mr. Young. Thank you very much, sir, and we appreciate your 
testimony. Larry, do you want to introduce the next member of 
your panel?
    Mr. Hoffheimer. Yes, I would like to introduce Morgan 
Downey. Morgan Downey is the Executive Director of the National 
Coalition for Research in Neurological Disorders.
    Mr. Downey. Thank you, sir. Thank you, Larry.
    Mr. Chairman and members of the subcommittee, I am pleased 
to appear before you again representing the National Coalition 
for Research in Neurological Disorders. I am especially pleased 
to be here with two of our longstanding members, the National 
Parkinson's Foundation and the FSH Society.
    At the outset, let me say, Mr. Chairman, that the 40 plus 
members of NCR stand in awe of Mr. Porter's leadership and the 
participation of this subcommittee last year, over the last 
couple of years, in making sure that NIH has received a budget 
commensurate with its importance to the American people.
    Mr. Chairman, I am here to congratulate this subcommittee 
and its members. About a decade ago, this subcommittee, through 
the energy and enthusiasm of the late Silvio O. Conte, forged 
the Decade of the Brain Congressional Resolution. This 
resolution, which NCR members vigorously lobbied for, 
articulated for the first time the promise and potential of the 
entire field of brain research and research on the nervous 
system.
    The leadership from this committee excited researchers, 
enthused patient advocates, and helped convince many private 
businesses, foundations and institutions that the time had come 
to focus on advances in understanding the human brain and in 
treating its disorders. What an exciting decade it has turned 
out to be. Molecular biology has transformed neuroscience more 
dramatically and more rapidly and more profoundly than any 
other area of biomedical research.
    Genetic linkage approaches have resulted in the 
identification of at least 50 neurologic disease genes, and in 
the chromosomal location of several hundred more, including 
Dushan type muscular dystrophy, myotonic dystrophy, 
Huntington's disease, sharcomaretooth disease, and 
neurofibromatosis. The gene defect for one type of ataxia has 
been identified and a blood test for identifying people who 
have the defect is already developed. Exciting progress is 
being made in genetic research in both Alzheimer's disease and 
Parkinson's disease. Animal models for these two diseases are 
allowing researchers to move ahead with powerful new tools.
    Tremendous progress is being made in understanding how 
intellectual stimulation affects brain cell development and how 
memories are made and stored. Neuroimaging techniques now 
permit the study for the human brain in vivo. Surgeons can now 
actually perform operations inside an MRI and view images of 
the brain as they are operating.
    The stigma attached to mental disorders is being pushed 
back, as the biological bases of these disorders is uncovered. 
New treatments are becoming available for many disorders of the 
brain, including Alzheimer's disease, Parkinson's disease, 
epilepsy, multiple sclerosis and migraine. The new therapy for 
stroke, the third leading cause of death in the United States, 
is revolutionizing how the medical community deals with this 
killer condition. For spinal cord injuries, we now know that 
prompt treatment with a steroid is improving the patient's 
prospects for functional recovery.
    The Decade of the Brain is living up to the scientific 
potential visualized in this room. Funding, however, has 
increased but not because of specific initiatives from Congress 
or the Administration. Rather, funding has increased because 
neuroscientists and NIH have realized the relevancy of this 
field to many, many disease areas. We applaud Director Harold 
Varmus' initiatives in setting the biology of brain disorders 
as one of his recognized areas of scientific opportunity.
    Mr. Chairman, as the chronological end of the Decade of the 
Brain approaches, it would be a mistake to assume that the era 
of exploration and accomplishment in brain science is also 
ending. It is only just beginning. In many ways, we are only 
just beginning to understand and treat these disorders. And 
none too soon. Demographers looking into the next century see a 
society grappling with huge populations affected by Alzheimer's 
disease, dementias, Parkinson's and depression. And that 
affects, as Mr. Mendoza just mentioned, not only affected 
patients, but in entire families and societies that have to 
provide care.
    Among new challenges for brain research are the following: 
neurogenetics. Amazing work is being conducted on the genetic 
causes of many brain disorders. However, this work is still in 
its infancy. The location, cloning and understanding of the 
progression of many neurogenetic diseases remains to be done. 
Gene mechanisms must be elucidated, diagnostic tests refined, 
treatment and prevention strategies developed.
    Neuroimaging. Brain mapping had made tremendous advances in 
just the last few years. Brain mapping involves both structural 
and functional mapping of specific brain areas. Such 
information is critical to improving effective neurosurgery, 
and reducing or avoiding injury to unaffected areas.
    Neurotherapeutics. Explosion of neuroscience has given 
great impetus to the development of new therapeutics agents. 
For their part, many leading pharmaceutical companies and 
smaller biotech companies have made the development of central 
nervous system products a major part of their discovery 
programs.
    However welcome this research is, and it is welcome, we 
must look to see if all areas benefit equally. In the recent 
spate of mergers and acquisitions in the pharmaceutical 
industry, the pressure is intense to develop products which 
have the market potential to recoup large costs of development 
and return a profit.
    Some brain disorders do affect millions of patients, while 
many others affect much smaller populations. Congress must not 
assume that because some areas are seeing breakthroughs that 
the development of new therapies will automatically follow.
    In summary, Mr. Chairman, the accomplishments of the Decade 
of the Brain as profound as they are only a down payment on 
curing these disorders. Brain disorders are extremely costly to 
the United States. They are often lifelong, chronic conditions 
leading to disability and death. A 1992 study by the National 
Foundation for Brain Research concluded that neurological, 
mental and addictive disorders cost $400 billion, 7.3 percent 
of our gross domestic product, or one in seven health care 
dollars.
    The members of NCR call on the members of this committee to 
reaffirm their commitment to the Decade of the Brain, to assure 
continuation of public awareness of the accomplishments of 
research in this area, and to recommit to attack the new 
challenges of brain research. This committee led the way 
before, and we are confident will do so again.
    NCR opposes the Administration's woefully inadequate budget 
recommendations for NIH, and recommends a 10 percent increase 
in the NIH brain research funding. This high level of approved 
project applications currently going unfunded assures that this 
commitment will be well spent, and lead us into the second 
decade of the brain.
    Thank you, Mr. Chairman.
    [Clerk's note.--Information required pursuant to clause 
2(g)(4) of Rule XI of the Rules of the House of Representatives 
was not received from this witness or from an entity 
represented by this witness]
    [The prepared statement of Morgan Downey follows:]

[Pages 1383 - 1389--The official Committee record contains additional material here.]


    Mr. Young. Mr. Downey, thank you very much. You have one 
more member of the panel, Larry.
    Mr. Hoffheimer. I would like to introduce Dan Perez.
    Mr. Perez. Mr. Chairman, it is a great pleasure to submit 
this testimony to you today. My name is Daniel Paul Perez, of 
Lexington, Massachusetts, and I am testifying today as 
President of the Facioscapularhumoral Society and as an 
individual who has this rare disorder called 
facioscapularhumoral muscular dystrophy.
    My testimony today is about the profound and devastating 
effects of a disease known as facioscapularhumoral disease, 
which is also known as FSH muscular dystrophy or FSHD, and of 
course, the urgent need for NIH funding for research on this 
disorder. The FSH disorder, otherwise known as 
facioscapularhumoral muscular dystrophy, or FSHD, is a 
neuromuscular disorder that is inherited in an autosomal 
dominant fashion and has an estimated frequency of 1 in 20,000.
    The major consequence of inheriting this disease is that of 
a progressive and severe loss of skeletal muscle, with the 
usual pattern of initial noticeable weakness of facial, 
scapular and upper arm muscles and subsequent developing 
weaknesses of other skeletal muscles.
    As a man with FSHD, I will tell you that it is a hard way 
to live, and that FSHD is a strong port. It will last a 
lifetime. No one should have to endure this disease.
    At 34 years of age, I consider myself a lifelong survivor 
of the severe trauma and tension of FSHD, and I do not say this 
lightly. I have dealt with the continuing, unrelenting and 
unending loss caused by FSHD from the first second, into the 
first minute, hour, day, week, over the months and through the 
years. Not for a moment is there a reprieve from the continual 
loss of my physical ability. Not for a moment is there a time 
for me to mourn. Not for a moment is there relief from the 
physical and mental pain that is a result of this disease.
    There is no known treatment and no known cause for this 
disease. FSHD has insidiously and systematically deprived me of 
my childhood, my adolescence, and a 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 in which 
you live and the way people perceive and treat you.
    I cannot smile. I can no longer hold a baby in my arms. I 
cannot close my eyes to sleep. I can no longer run or walk on 
the beach or climb stairs.
    Everyday I am aware of the things that I may not be able to 
do tomorrow. Look at what this disease does to people. Look at 
me. Look at what I see, a child with a profound hearing loss, 
the broken innocence of a child, alienation at an early age, a 
decision not to marry, a decision not to have biological 
children, disability in the prime of life. Incapacitation in 
middle age, the guilt of a parent, a lifetime of physical 
challenge, a suicide, a premature death, anxiety caused by 
uncontrollable loss, decades spent somewhere between the able 
and the disabled, the loss of ambulating and the unstopping 
atrophy and loss of muscle.
    The humiliation endured in the process. This is the reality 
for the tens of thousands of people living with FSHD in the 
United States. The men, women and children who live with the 
daily consequences of this devastating disease are your 
friends, neighbors, fellow taxpayers and contributors to the 
American way of life. With an historical 88 percent 
unemployment rate and an average educational achievement level 
of 14 years, we personally bear our burden of the health care 
costs and expenses to prepare for and maintain financial and 
personal independence. With quiet dignity, we live our lives as 
productively as possible with FSHD.
    Largely thanks to the efforts of Mr. Porter and your 
efforts, Mr. Chairman, NIH research funding continues to grow. 
However, I regret to say that there has been a loss of momentum 
on the only NIH project working on FSHD human molecular 
genetics. We need to create a core center for FSHD research to 
be run within the auspices of NIH. We need intramural NIH 
programs enacted immediately. We need extramural contracts and 
grant programs enacted immediately.
    We have met at the NIH with regard to this current crisis 
in our research. We all realize the profound loss of dedicated, 
intelligent professionals working on FSHD and the continuing 
need to attract, retain and maintain programs solely focused on 
FSHD. The FHS Society maintains that FSHD is an interesting 
problem and has merit scientifically. The mechanism of FSHD 
will have tremendous application to understanding and giving us 
insight into the molecular basis of all diseases related to the 
structure of the chromosomes.
    The total NIH funding for directly titled FSHD research for 
the fiscal year 1997 is approximately $500,000. This will drop 
to $150,000 per year by year's end, if no new grants are 
submitted or contracts issued.
    This is the United States of America. And in a country as 
great as ours, with all its technical means and ability, it 
should be absolutely clear, if not completely black and white, 
that the number one priority for individuals with FSHD and the 
one absolutely commanding imperative for the Federal Government 
is to initiate and accelerate in any way possible research on 
FSHD.
    With modest funding and a clear direction from Congress to 
the NIH to support research on FSHD, significant progress can 
be made in conquering and eliminating this and other 
devastating diseases.
    Mr. Chairman, again, thank you for providing this 
opportunity to testify before your subcommittee.
    [Clerk's note.--Information required pursuant to clause 
2(g)(4) of Rule XI of the Rules of the House of Representatives 
was not received from this witness or from an entity 
represented by this witness]
    [The prepared statement of Daniel Perez follows:]

[Pages 1392 - 1401--The official Committee record contains additional material here.]


    Mr. Young. Mr. Perez, thank you very much for a very, very 
thorough statement. Before the panel leaves the table, I would 
like to yield to my very distinguished colleague and long time 
member of this subcommittee, Mr. Stokes, for any comments or 
questions that he would have of the members of the panel.
    Mr. Stokes. Thank you very much, Mr. Chairman.
    I do not believe I have any questions, but I would like to 
make a brief statement. Personally, on this subcommittee 
throughout the year, we hear a lot of testimony from Americans 
about various diseases afflicting and affecting Americans. At 
no time have we heard any more eloquent testimony regarding any 
disease than we have here today from those who sit on this 
panel.
    I am particularly moved today by the presence of Mrs. Udall 
in this audience. I served in this body for many years with Mo 
Udall. He is a man for whom I, along with all of those of us 
who serve in this body have great admiration and great 
affection. He is probably one of the most eloquent persons who 
ever served in this body. History will record the fact that Mo 
Udall was one of the great Americans that served in this body.
    Of course, the presence of Muhammad Ali and Mrs. Ali, and I 
could say to you, Mrs. Ali, that Muhammad Ali's presence and 
his speaking on behalf of this cause does make a difference. I 
do not know of any other American held with the high esteem 
with which we all hold Muhammad Ali. It is just a great honor 
for those of us who sit on this committee to have him present 
here today, and to speak as eloquently as he still speaks 
through you.
    In our eyes, and the eyes of all Americans, he is still the 
greatest. We thank you for your appearance here today.
    Thank you, Mr. Chairman.
    Mr. Young. I would like to recognize at this point my 
colleague from Florida, another very distinguished member of 
this subcommittee, Dan Miller.
    Mr. Miller. Thank you, Mr. Chairman.
    Let me just take a minute to thank you all for testifying, 
all of you. This is my third year on this committee, and one of 
the real pleasures is the support that we can offer to NIH. I 
think what is important about Muhammad Ali's presence here and 
showing his support is not just for Parkinson's, which is very 
important, but for all the diseases that we face, is that it is 
important to the American people that NIH is a critical part of 
this Government. It is really one of the crown jewel of our 
Federal Government. It is something we can all be proud of. It 
is not a partisan issue.
    I think its so important to have someone like Muhammad Ali 
bring it to the attention of the American people that we need 
it for Parkinson's disease, but we need it for AIDS, we need it 
for cancer and other diseases. We just do not always get enough 
of that public support.
    So you really are contributing to the public awareness of 
the critical role that biomedical research is needed in this 
country, and the role the Federal Government has.
    So thank you for your presence here and thank all of you 
all for testifying today.
    Mr. Young. I also want to thank you, Lonnie and Muhammad 
Ali, and all the members of the panel for being here today. Do 
you have anything that you would like to add before we have 
another panel?
    Mrs. Ali. On a personal note, if your wife ever wants to 
call and talk, I will leave my phone number.
    Mr. Young. Okay, thank you.
    Well, it has been really great to have all of you here, and 
as both Mr. Stokes and Mr. Miller have said, the members of 
this subcommittee are dedicated to the eradication of these 
terrible diseases. We do the very best we can with the 
resources that are becoming more limited all the time.
    We will declare a very short brief recess now so that this 
panel can depart and Mr. and Mrs. Ali can depart, then we will 
get right back to the witness list.
                              ----------                              

                                         Wednesday, April 23, 1997.

                                WITNESS

MARTIN STEPHENS, HUMANE SOCIETY OF THE UNITED STATES
    Mr. Young. The committee will come back to order. We will 
declare the recess over and we will get back to the testimony.
    I would like to call to the table Doctor Martin Stephens, 
vice president of animal research issues of the Humane Society 
of the United States. I had mentioned earlier at the beginning 
of the afternoon session that, because we have a very lengthy 
agenda, we will abide by the five minute rule. Your entire 
statement will be placed in the record, and we would ask that 
you summarize it within five minutes. If you see my hand 
reaching over toward the gavel, that means it is almost five 
minutes. We are more than happy to hear from you. We apologize 
for the fact that you had to stay over this afternoon since you 
were on the morning schedule. You now have the floor, sir.
    Dr. Stephens. Thank you, Mr. Chairman. No problem about the 
delay. I am Doctor Martin Stephens, vice president for animal 
research issues at the Humane Society of the United States. The 
HSUS is the Nation's largest animal protection organization 
with over 4.7 million members and constituents. I am speaking 
today on behalf of the HSUS as well as the American Humane 
Association, the Doris Day Animal Rescue League, and the 
Massachusetts Society for the Prevention of Cruelty to Animals. 
We appreciate this opportunity to testify on the fiscal year 
1998 appropriation for the National Institute of Environmental 
Health Sciences, which, as you know, Mr. Chairman, is one of 
the components of the National Institutes of Health.
    The organizations I represent today are part of an unusual 
coalition that includes not only animal protection societies, 
but also consumer product companies and a university. Our goal 
is to improve the welfare of animals used in the field of 
product safety testing. We seek to achieve this goal by 
encouraging the Federal Government to help industry modernize 
its testing methods. What unites the coalition is our 
conviction that we can have both improved consumer safety and a 
reduced reliance on animals in the use of safety assessment 
through the application of good science. In this regard, we 
applaud the Federal Government for establishing the Interagency 
Coordinating Committee for the Validation of Alternative 
Methods, with the acronym of ICCVAM. This is a multi-agency 
effort spearheaded by the NIEHS. We urge this appropriations 
subcommittee to support the work of ICCVAM.
    Before describing that interagency committee's activities, 
let me provide a little bit of background very briefly. As you 
know, Mr. Chairman, numerous Federal agencies regulate the 
product testing practices of industry. Historically, these 
Federal agencies have provided little guidance to industry on 
how to gain regulatory approval of new test methods, and 
particular companies sought guidance on how to conduct 
evaluations of new test methods. This is an expensive and 
complex process known as validation.
    Working with our coalition, the Congress turned this 
situation around in 1993. In the NIH Revitalization Act, 
Congress directed the NIEHS to expand and coordinate the 
Government's work on alternative methods. Specifically, the 
NIEHS was directed to carry out two activities: (1) establish 
criteria for the validation and regulatory acceptance of new 
alternative methods; and (2) to recommend a process through 
which scientifically validated alternative methods can be 
accepted for regulatory use. As the term is used in this 
legislation and in the field of laboratory animal welfare, 
alternatives are methods that replace, reduce, or refine the 
use of animals in specific tests. For example, a simple drug 
store kit has replaced the use of animals in pregnancy testing.
    We commend the NIEHS for its ongoing work in implementing 
the NIH Revitalization Act. In 1994, the NIEHS established the 
Interagency Coordinating Committee for the Validation of 
Alternative Methods which includes representatives from all 
relevant Federal regulatory agencies. In 1995, ICCVAM held a 
workshop on the validation and regulatory acceptance of 
toxicological test methods and issued its report earlier this 
year on the subject. The publication of that report was a 
landmark event in the process of modernizing toxicological 
methods and in decreasing reliance on traditional animal tests. 
The report provides the Federal Government's collective advice 
on how to validate new test methods, and it encourages industry 
to involve appropriate Government representatives in the 
validation programs at the earliest possible stages. The report 
also outlines the process that the Government will use in 
assessing regulatory acceptability of new test methods as well 
as principals that will govern that assessment.
    Mr. Chairman, the NIEHS is moving swiftly to translate the 
ICCVAM report into action. It is changing ICCVAM's status from 
an ad hoc body to a standing committee. Also, the NIEHS plans 
to establish a new center with a small staff to handle the day-
to-day work of ICCVAM, such as organizing workshops.
    Since its inception, ICCVAM has become a major player in 
promoting the development, validation, and regulatory 
acceptance of alternative methods in the United States and 
internationally. This interagency committee is involving the 
various Federal agencies involved in the safety assessment 
process to speak with one voice when addressing industry's 
efforts to substitute new alternative methods for current 
animal tests.
    Mr. Chairman, the NIEHS' monetary investment in advancing 
alternative methods, though too small to constitute a line item 
in the agency's $319 million budget, will have a considerable 
impact in facilitating the private sector's adoption of more 
sophisticated and humane methods of safety testing. We 
therefore request that this committee express its support of 
the NIEHS' important work in advancing new alternative methods 
of safety testing in its report language on the 1998 Labor, 
HHS, Education appropriation. Thank you, Mr. Chairman.
    [The prepared statement of Martin Stephens follows:]

[Pages 1406 - 1414--The official Committee record contains additional material here.]


    Mr. Young. Doctor, thank you very much for being here 
today.
    Mr. Miller, do you have any questions?
    Mr. Miller. No questions, Mr. Chairman.
    Mr. Young. Doctor Stephens, thank you very much. We 
appreciate your testimony. Again, we apologize for your having 
to stay over.
    Dr. Stephens. You're welcome, and thank you.
                              ----------                              

                                         Wednesday, April 23, 1997.

                                 WITNESS

P. FREDERICK SPARLING, M.D., THE INFECTIOUS DISEASES SOCIETY OF AMERICA
    Mr. Young. Next, I invite Doctor Frederick Sparling, 
Professor and Chairman of the Department of Medicine at the 
University of North Carolina. Doctor Sparling was scheduled for 
the morning but time ran out. Doctor, we appreciate your 
staying over. Again, your entire statement will be placed in 
the record and we ask you to summarize it the best you can. You 
are now recognized, Doctor Sparling.
    Dr. Sparling. Thank you very much, Mr. Chairman. I am very 
grateful for your allowing us to testify and grateful for you 
sitting here and listening to us testify. I must say it is with 
some trepidation that I testify, because it is difficult to do 
so effectively after the power and the magnificence of the 
first panel. I am afraid we pale a bit.
    Nevertheless, I am here representing the Infectious 
Diseases Society of America, for which I sit as President this 
year. I would like to remind all of us that infectious diseases 
are the leading cause of death in the world, and the third 
leading cause of death in this country.
    Investment of sufficient monies into basic and clinical 
research today will dramatically reduce the health care costs 
and improve the quality of life for millions. We urge this 
committee to continue, as we are very well aware you have very 
strongly in the past, to support the NIH and the CDC, and to 
demonstrate your continued leadership and foresight by 
appropriating the much-needed funding, including funding 
increases, to combat and catch diseases in the future.
    Specific initiatives for which we hope you will ensure 
adequate funding include:
    First, emerging infectious diseases. The media attests that 
new and dangerous infectious diseases continue to challenge us. 
Books, movies, television have many stories, and we are all 
aware of that. Examples include Hanta virus infection, HIV, and 
the Ebola virus of emerging infections. And re-emerging 
infections are also common and include cholera, malaria, TB, 
and many others.
    The Centers for Disease Control has developed an action 
plan that emphasizes improved disease detection and response 
for these emerging infectious diseases. The Infectious Diseases 
Society believes that CDC could effectively use a total 
appropriation of $75 million to implement their worthwhile 
programs in fiscal year 1998.
    The Society also stresses the vital role that NIAID plays 
as CDC's partner in responding to the threat of emerging 
infectious diseases by conducting basic research in 
microbiology, immunology, and cell biology.
    Second, vaccine research and development. Immunizations are 
one of the most cost-effective things that we can do. For every 
$1 spent on immunizations as much as $29 can be saved in direct 
and indirect costs. Recent scientific advances have enabled the 
development of new vaccines and significant improvements in the 
efficacy and safety of existing vaccines. For example, the new 
chicken pox vaccine and the improved pertussis vaccine.
    Increased funding will enable NIAID and CDC to develop new 
and safer vaccines for many other serious infectious diseases, 
including AIDS, sexually transmitted diseases, TB, and Malaria. 
Funding for development of an adult immunization program by CDC 
can save thousands of lives and billions of dollars.
    Third, AIDS research. As you know, AIDS is now the leading 
cause of death among adults aged 25 to 44 in this country. 
NIAID is making great headway in AIDS research by developing 
combination drug therapies that appear to control the disease 
better, and a cure is not absolutely impossible in some cases.
    Continued funding of clinical trials is necessary to 
continue this progress. An AIDS vaccine will only be possible 
if there is strong and continuing support of basic research by 
the NIH.
    Fourth, STD prevention and treatment. A recent Institute of 
Medicine report notes that of the top ten most frequently 
reported diseases in this country, five are sexually 
transmitted. Approximately 12 million new cases of STDs occur 
annually, and the U.S. has the highest reported rate of curable 
STD in the developing world, which is shameful. The cost of 
ignoring STD treatment is enormous, estimated by the IOM to be 
about $10 million a year. Moreover, curable STDs left untreated 
can contribute to increased spread of HIV.
    The Society recommends a total STD prevention program 
budget of $145 million to enable CDC to implement the 
recommendations contained in the IOM report, and a $50 million 
increase in the funding for the Chlamydia Screening and 
Infertility Prevention program, a $2 million increase over the 
Administration's proposed budget. CDC's budget should be 
supported by additional basic STD research at the NIAID, for 
which we recommend a budget of $83.7 million.
    Fifth, and last, training and career grants. Mr. Chairman, 
the biomedical discoveries being made today had their origins 
in basic research in the past. Continued leadership and 
progress in combatting infectious diseases are directly related 
to our ability to train and to retain new investigators in the 
field, which is very much threatened, as you know. Academic 
health centers are fiscally challenged, as you know. More than 
ever before, rigorous support of training grants and research 
career development awards is essential to ensure the 
continuation of the science that will lead to the beneficial 
harvest of tomorrow.
    IDSA very much appreciates this opportunity to testify 
before you about the importance of adequate appropriations for 
research, prevention, and treatment of infectious diseases. We 
believe that you will continue to conclude, as we do, greater 
investment in these significant programs today will pay 
dividends in their future. Thank you very much.
    [The prepared statement of Frederick Sparling, M.D., 
follows:]

[Pages 1418 - 1426--The official Committee record contains additional material here.]


    Mr. Young. Doctor, thank you very much. We appreciate your 
being here today and your testimony.
    Mr. Miller.
    Mr. Miller. No questions, Mr. Chairman. Thank you very 
much.
    Mr. Young. Thank you again, Doctor.

                              ----------                              

                                         Wednesday, April 23, 1997.

                                WITNESS

WARREN GREENBERG, MENDED HEARTS, INC.

    Mr. Young. I would now like to call Warren Greenberg, 
Ph.D., Chairman of the Committee on Lobbying and Legislation 
for the Mended Hearts, Inc. Doctor Greenberg, we have a very 
active Mended Hearts group in my district that I have the 
privilege of representing and I stay close in touch because 
mine has been mended. For those who claim that politicians 
don't have hearts, I can prove that I do because I have a 
picture of it. [Laughter.]
    Mr. Greenberg. I am pleased to be here, Mr. Chairman and 
members of the subcommittee. Mr. Young, I do know there is a 
Mended Hearts branch right in St. Petersburg, Florida, which I 
know you represent, and are very actively concerned about 
people with mended hearts.
    My name is Warren Greenberg. I am a professor of health 
economics and of health care sciences at the George Washington 
University. I am married and have a 22 year old daughter. I am 
here to testify for an increased appropriation for the National 
Heart, Lung, and Blood Institute. I am a victim of heart 
disease, and a beneficiary of the efforts of medical 
researchers to overcome this disease. I might also add that I 
am a member of Mended Hearts, as the Chairman notes, a support 
group of 24,000 members throughout the United States who have 
heart disease. I have been appointed lobbying and legislative 
chairperson of that group. It is a volunteer position.
    I am 54 years old. I was born with aortic stenosis, a 
narrowing of the heart valve. Throughout my entire life I have 
lived with heart disease, often incredibly severe. When I was 
in my early teens, my physicians did not allow me to play high 
school intramural sports, although I was a fine young athlete. 
At the age of 18, I was told not to play ball under any 
circumstances. In my early 20s, I was told to climb no more 
than two flights of stairs. By my early and mid-30s, I began to 
climb steps more and more slowly, often pausing to rest. I 
never carried an attache case in from work. It was too heavy. I 
would often balance a large book on my hips rather than 
carrying it outright in order to blunt the weight. I would walk 
two or three blocks on a level street to avoid going up three 
or four steps at the end of particular blocks. I could barely 
lift my newborn child. I could not help my wife take in the 
groceries.
    On May 7, 1982, at the age of 39, I had open heart surgery 
at the Cleveland Clinic to replace my diseased valve with the 
valve of a pig. After my sixth week recuperative period, I was 
amazed to find that not only was I able to walk, but I was also 
able to play tennis, to jog, and to exercise. I was able to 
live a normal life.
    By 1988, however, my new valve had failed. In August I 
again had cardiac surgery at the Cleveland Clinic to replace 
the failed valve with an artificial valve known as a St. Jude's 
valve. I again am able to live a relatively normal, very 
productive life, and I am deeply thankful for it. I still take 
a blood-thinning medicine, coumadin, which helps prevents clots 
in my new valve. At the same time, because of the medicine, I 
must be cognizant and careful of excessive bleeding.
    In 1983, I contracted endocarditis, an infection of the 
heart valve, from dental surgery which kept me in the hospital 
for six weeks. Whenever I have dental work, I now get 
intravenous penicillin to protect me against such infections. I 
realize that my valve is a mechanical device and can fail at 
any time.
    For nearly 15 years, thanks to the fruits of medical 
research, I have been able to travel abroad at least once a 
year, to jog in the park, to be a productive author of many 
scholarly articles, a number of books on the health care 
economy. I have been quoted often on my views on the U.S. 
health care system, and have made many television appearances. 
If it were not for the advances in research leading to improved 
techniques in open heart surgery, I would not have seen my 40th 
birthday. I would not be able to look forward to a life of many 
rewards and enjoyments.
    As an economist, I observe always the link between monetary 
resources and the development of innovation and technology. 
Health care research and cardiovascular research is no 
exception. I also understand as an economist that there are 
always competing uses for appropriated monies. However, 
cardiovascular diseases last year killed more than 950,000 
Americans, more than 150,000 of whom were under the age of 65. 
Despite advances in medical research, these diseases remain the 
number one killer in the United States and the leading cause of 
disability.
    Mr. Chairman, others on the subcommittee, from my personal 
perspective, and for those in Mended Hearts, and for others in 
the United States who have heart disease or who will get it in 
their lifetime, consistent with congressional resolutions for 
the NIH, I ask for a doubling of the NIHLBI budget by the year 
2002. To reach this funding goal I advocate a fiscal year 1998 
appropriation of $1.65 billion for the NIHLBI to help further 
reduce the incidents and the degree of heart disease in this 
country. Thank you, Mr. Chairman.
    [The prepared statement of Warren Greenberg follows:]

[Pages 1429 - 1434--The official Committee record contains additional material here.]


    Mr. Young. Mr. Greenberg, thank you very much. We 
appreciate your being here.
    Mr. Stokes, do you have any questions for Mr. Greenberg?
    Mr. Stokes. No questions, Mr. Chairman.
    Mr. Young. Mr. Miller, any questions?
    Mr. Miller. No questions. Thank you, Mr. Chairman.
    Mr. Young. Mr. Istook.
    Mr. Istook. I have no questions, Mr. Chairman.
    Mr. Greenberg. I might mention that I mentioned to 
Congressman Stokes before that I had open heart surgery at the 
Cleveland Clinic. I know Mr. Stokes represents that area. It 
turned out to be pretty good, Mr. Stokes.
    Mr. Stokes. I may say I also had open heart surgery at 
Cleveland Clinic, in my district. [Laughter.]
    Mr. Young. Thank you very much, Mr. Greenberg, for being 
here. Mr. Stokes and I, as well as you have a personal interest 
in any research dealing with heart issues.
    Mr. Greenberg. Thank you, Congressman.

                              ----------                              

                                         Wednesday, April 23, 1997.

                                WITNESS

MILLICENT GORHAM, NATIONAL BLACK NURSES ASSOCIATION

    Mr. Young. I would now like to invite Millicent Gorham to 
come to the table. She is the executive director of the 
National Black Nurses Association. We are happy to have you 
here today. I want to thank you and the members of the National 
Black Nurses Association for being so helpful to us as we try 
to enlarge our list of potential bone marrow donors. We have 
special recruiting programs, as you know, for minority donors. 
The Black Nurses Association has been very, very helpful, with 
this Committee, in having been involved in the creation of that 
program. We certainly appreciate it. We would like to recognize 
you for five minutes. Your entire statement will be placed in 
the record.
    Just a minute. I made a terrible mistake here. I would like 
to yield to Mr. Stokes to make the formal introduction of 
Millicent Gorham. Lou, I apologize for moving on too quickly 
there.
    Mr. Stokes. Thank you very much, Mr. Chairman. I appreciate 
your yielding to me for this purpose. I would just like to make 
a couple of brief remarks. Some few years ago, Millicent Gorham 
was my health legislative aide. At that time, for a period of 
about four years, she worked in that capacity for me. During 
that period of time, she also was the coordinator for the 
Congressional Black Caucus Health Brain Trust, which I happened 
to chair, and did an outstanding job in that capacity.
    She then went on to several other health organizations 
where she did an outstanding job. She comes before us today as 
the executive director for the National Black Nurses 
Association. That is a group that I am very proud of, as you 
are, Mr. Chairman. They represent about 150,000 African-
American nurses. The organization was founded in Cleveland, 
Ohio, in my congressional district, 26 years ago. I have had 
the privilege and honor of working with all of them for many 
years. They do an enormously outstanding job in terms of 
minority issues as they relate to health. So, I am very pleased 
to welcome their executive director, Ms. Millicent Gorham, a 
very fine young lady, to our subcommittee.
    Mr. Young. Ms. Gorham, you have the floor.
    Ms. Gorham. Thank you, Mr. Chairman, Mr. Stokes, and to the 
entire subcommittee. The National Black Nurses Association 
urges the Congress to fund the nurse education and training 
programs at $65.3 million. Funds for these programs are 
essential for the education of registered nurses and advanced 
practice registered nurses who are oriented towards primary 
care, health promotion and disease prevention, and public 
health efforts in institutional and community settings. 
Moreover, there is a need for researchers and nursing faculty 
as well.
    The Congress is at the forefront of the dynamic changes in 
our health care system. With emerging models focusing on 
primary health care and community-based health care delivery, 
there is a pressing need for the preparation of culturally 
competent professional nurses who come from and return to 
practice in under-served areas. With less than 2 percent of 
African-Americans having advanced practice nursing degrees, it 
is only reasonable that Congress make every effort to ensure 
that nurses are appropriately educated so that they can manage 
the medical and health problems seen in the primary care and 
acute care settings in which they work.
    NBNA supports the $61 million for the National Institute of 
Nursing Research. Funding for NINR is to support research to 
reduce the risk factors associated with disease and disability, 
and to promote healthy lifestyles and behaviors. For example, 
NBNA member Doctor Loretta Sweet Jermott is working with 
adolescents to reduce the risk of HIV/AIDS. Doctor Jermott's 
work involves a coalition between nurse researchers and public 
schools. The Cleveland Chapter of the NBNA has developed a 
model to increase screenings to prevent retinal detachment 
associated with diabetes. NBNA asks that NIH and NINR adopt as 
a priority funding of community-based research to investigate 
and mitigate chronic health diseases, and to support research 
on the best, most efficacious delivery models for diverse 
populations within and outside of acute care settings.
    NBNA recommends $30 million for the U.S. Office of Minority 
Health. It is worth noting that NBNA is part of the 13-member 
Black Congress on Health Law and Economics which has received 
one of the ten cooperative grants from OMH. The grant supports 
the West Tallahatchee, Mississippi project. As part of this 
project, NBNA members provide health services that include 
childhood immunizations, screenings for hypertension and 
cholesterol, and health outreach services on cancer, diabetes, 
HIV/AIDS, and maternal and child health interventions.
    NBNA requests funding of $468 million for immunization 
programs for fiscal year 1998. While the Centers for Disease 
Control immunization coverage goals have been achieved for the 
individual vaccines, many children are still in need of one or 
more vaccinations. Major cities like Detroit, Newark, 
Philadelphia County, and Chicago need major outreach efforts to 
ensure that immunization rates are significantly increased.
    As part of the National Infant Immunization Week, yesterday 
D.C. NBNA members took the immunization message to the 
community by visiting beauty salons in Ward I. NBNA members and 
local beauticians will work together to push for higher local 
immunization rates. NBNA will be launching its campaign to 
immunize our children in six other cities in the United States 
this year.
    Violence is another major issue that NBNA believes needs 
special attention. In September of 1996, the Congressional 
Black Caucus Health Brain Trust recommended that the Congress 
fund a youth violence prevention initiative. This initiative 
would be consistent with the activities currently conducted 
under the auspices of the CDC Injury Control program. Hospital 
emergency room nurses and critical care nurses have seen more 
than their fair share of handgun victims. Nurses working in 
rehabilitative centers are caring for more and more young 
people who are disabled by violence. We must begin to fund 
community-based programs that educate and empower children, 
families, and health care providers to prevent violence.
    NBNA requests $20 million for the National Institutes of 
Health Office of Research on Women's Health for fiscal year 
1998. RWH will host a conference this summer in Santa Fe for 
women of diverse populations and cultures. We anticipate the 
recommendations from this conference will generate more areas 
of study by that office. NBNA wholeheartedly supports the 
Women's Health Initiative. NBNA has recruited 2,300 women to be 
a part of this study. It is critical that minority women 
participate in clinical trials not only as subjects of the 
study, but also as those who help to design, implement, and 
interpret such studies. We need better data on how gender, 
ethnicity, and cultural differences impact diagnoses, 
treatment, and outcomes of diseases among different 
populations.
    Thank you for your attention on these critical health 
programs that impact African-American nurses and the 
communities that they serve.
    [The prepared statement of Millicent Gorham follows:]

[Pages 1438 - 1449--The official Committee record contains additional material here.]


    Mr. Young. Ms. Gorham, thank you very much, and thank you 
for the good work that your organization does.
    Mr. Stokes, do you have any questions.
    Mr. Stokes. I have no questions, Mr. Chairman.
    Mr. Young. Mr. Istook, questions?
    Mr. Istook. No questions.
    Mr. Young. I thank you very much.
    I would now yield the Chair to Mr. Istook.
    Mr. Istook [assuming chair]. Thank you, Mr. Chairman.

                              ----------                              

                                         Wednesday, April 23, 1997.

                               WITNESSES

GLORIA REICH, M.D., AMERICAN TINNITUS ASSOCIATION
MEGAN VIDIS

    Mr. Istook. I believe our next scheduled witness is Doctor 
Gloria Reich. I understand you are here on behalf of the 
American Tinnitus Association. Please proceed.
    Ms. Reich. Good afternoon, Mr. Chairman and Subcommittee 
Members, staff, and guests. I am Doctor Gloria Reich, executive 
director of the American Tinnitus Association. I am hearing 
impaired and I experience tinnitus, a condition shared by 50 
million Americans. With me today is Megan Vidis, a 
businesswoman from Chicago and a member of our board of 
directors, who will in just a moment tell you about her 
tinnitus.
    What is tinnitus? It is the perception of sound when no 
sound is present. It can take the form of ringing, hissing, 
roaring, whistling, chirping, clicking. The noise can be 
intermittent or constant, with single or multiple tones. It can 
be subtle or at a life-shattering level. It can strike people 
of all ages, and for most it does not go away.
    Both knowledge and treatment of tinnitus have improved over 
the last two decades with increased research. There are, 
however, still many questions that remain unanswered. The 
mechanism that causes tinnitus is unknown, and that fact alone 
makes it impossible to diagnose and treat it properly.
    Two years ago, the National Institute on Deafness and other 
Communication Disorders conducted a tinnitus workshop and 
recommended three strategies for research. To date, five 
studies have been funded through this program, representing a 
great stride forward for tinnitus research within the NIDCD. 
For that, we are truly grateful. Just three years ago, the word 
``tinnitus'' was not even mentioned in the NIDCD plan.
    Our own association, working with very limited funding, 
supports tinnitus research on a much more modest scale. We fund 
clinical studies that can produce more efficacious treatments 
for immediate use, or studies that collect pilot data needed to 
enable a researcher to apply for a larger NIDCD grant.
    It is extremely important in our view for Congress to fund 
medical research. It is important also that the Institutes 
receiving that funding truly respond to the public's need. 
Hearing problems, and tinnitus specifically, are the most 
prevalent health issue in this country but receive little 
attention in comparison to more visible life-threatening 
issues. We ask you please to generously support the funding for 
the National Institute on Deafness and other Communication 
Disorders, and to urge the NIDCD to continue providing for 
studies specifically about tinnitus.
    Megan.
    Ms. Vidis. Good afternoon. I would like to thank you for 
affording me the opportunity to offer a few words of personal 
testimony. My name is Megan Vidis. I am from Chicago. Today is 
my 38th birthday, which puts me in the lower spectrum of the 
age range for people suffering from tinnitus.
    About three years ago, I noticed a faint hum like the sound 
of a refrigerator running whenever I was in a quiet 
environment. It is an annoyance my doctor termed tinnitus, and 
untreatable. For a while it was just a minor nuisance, and then 
it escalated into a shrieking oscillating siren in my head. I 
could not sleep, I could not concentrate, and I could not work.
    I began a horrific odyssey from one doctor to another. I 
learned from them that tinnitus has no known cause or cure. It 
is viewed as a symptom of other conditions. I am tumor-free and 
my hearing is perfect, thank God. So they had no idea how to 
help me. Over the course of a year, I saw 14 doctors. After 
trying every treatment offered me and many thousands of dollars 
desperately trying to get this noise to subside, a doctor gave 
me oral steroids and suldane. This combination of drugs 
eventually calmed the squealing in my head. It is not gone, it 
never will be, but I can live with it for now. I can work, I 
got married, and I am expecting my first child.
    I would like to stress that my story puts me in a tiny 
minority of tinnitus sufferers. Most doctors prescribe some 
form of sedative and send sufferers home to live with this 
torture. They are not willing to try and treat tinnitus, and do 
not have the education to even know where to begin. I know that 
tinnitus is not fatal; it cannot take your life, but it can 
destroy it. Since the onset of my tinnitus, I have started a 
support group in Chicago and been elected to the board of 
directors of the American Tinnitus Association. I have spoken 
to many terrified people who have lost their ability to 
function as a member of society. They tell me of their 
paralyzing fear for what their futures hold, the possible 
descent into a life with nothing but noise, losing their worlds 
to a disorder no family member can hear or a friend understand. 
Worst of all is the total lack of hope for treatment. Awful 
pain and fear of the future is bearable if you have some hope.
    Today, tinnitus sufferers are offered no hope. The people 
in my support group cling to each other. We depend on each 
other for the understanding and empathy no one else offers us. 
My small group and the nearly 15 million American chronic 
sufferers of tinnitus deserve more than this. We deserve 
treatment. Thank you.
    [The prepared statement of Gloria Reich follows:]

[Pages 1452 - 1458--The official Committee record contains additional material here.]


    Mr. Istook. Thank you very much. We certainly appreciate 
the testimony from each of you and your personal stories in 
particular. Thank you for coming.

                              ----------                              

                                         Wednesday, April 23, 1997.

                                WITNESS

ALBERT H. OWENS, JR., M.D., NATIONAL COALITION FOR CANCER RESEARCH

    Mr. Istook. Next on the schedule I believe is Doctor Albert 
Owens, Director of the Johns Hopkins Oncology Center, and 
president of the National Coalition for Cancer Research. Doctor 
Owens.
    Dr. Owens. Thank you, Mr. Chairman. I am the founding 
director of the Oncology Center, but I am currently the 
president of the National Coalition for Cancer Research which 
is why I am before you. We appreciate very much the opportunity 
to present testimony. I think we also appreciate the fact that 
this subcommittee and its Chairman have worked hard and have 
done very many things in behalf of support of biomedical 
research. I think we want to be sure that you have our 
expression of gratitude.
    In cancer, we have had some encouragement and good news in 
the last few years, because for the last four or five years the 
death rate due to various cancers has been declining. Lest we 
take heart falsely, however, realize that our population is 
growing and realize that our population is aging, and so when 
we say that we spend $100 billion on the care of cancer 
patients today, we are likely to be spending more tomorrow 
unless things improve, which is basically the rationale for our 
requesting more monies and continued support of cancer 
research. It is a complex set of diseases and I think it is 
going to be unravelled a step at a time. I am optimistic, and I 
think we all should be optimistic, about the outcome.
    In the last 20 or 30 years, we have probably learned more 
about the human body than we have in all preceding history. We 
are learning things about how genes work, we are learning 
things about the biochemistry of disease, and mechanism of 
action of drugs. They are building on one another, so that I 
think there is reason to be optimistic.
    I have come here two or three times I guess, it has been my 
privilege, to ask for money. You might say, well, we have a 
great many competing worthy causes that are represented before 
you. You might ask the question, how much public monies do you 
think ought to be devoted to the support of biomedical 
research? Well, if I were in the commercial sector and was 
trying to have a company that succeeded, for example, a 
pharmaceutical company I understand spends about 20 percent of 
their annual U.S. revenues on research. I know that the NIH 
appropriation this past year is $13 billion; $2 billion was 
allocated to the NCI. I also heard that the direct costs of 
annual health care in this country approach $1 trillion. So 
from that prospect, how much should we be devoting to research 
to improve our lot and reduce those costs? We have a gross 
domestic product of $7.9 trillion, I understand. So it is some 
of those perspectives that bring us back to ask. We are very, 
very encouraged by the congressional leadership that is 
attempting to double the NIH appropriation.
    It is not just that money is the answer; money is necessary 
but not sufficient. It seems to me that there are trends 
already that the best and the brightest in this country are not 
coming to medicine and medical science the way they were a 
decade ago. It seems that there are more and more academic 
health centers, if you will, that are under siege by virtue of 
all the chaotic changes in reimbursement for health care. I 
think many of them that we depend on are approaching the 
endangered species list. Patients, who, after all, have to 
participate in research protocols if we are going to learn 
whether we can more effectively deal with human disease, 
frequently are denied that opportunity because of the way their 
HMOs manage their costs. If you look at the fact that six or 
seven years are required and $600 or $700 million are required 
to get a new anti-cancer drug to market, I hope we can try to 
shorten those things, too.
    So, very briefly, I again thank you for what you have done. 
I would like to encourage everybody to do more, support the 
doubling of the budget. I think every bit of it is going to 
yield something of great value. I probably do not need to 
remind you, but discoveries are not only helpful to health 
care, but discoveries are supporting our biotechnology industry 
which, after all, has also got to compete in a world economy. 
Thank you very much.
    [The prepared statement of Albert Owens, M.D., follows:]

[Pages 1461 - 1470--The official Committee record contains additional material here.]


    Mr. Istook. Thank you very much, Doctor Owens, and thank 
you for the further comments that are in your written statement 
that we will have in the record. We appreciate your testimony.

                              ----------                              

                                         Wednesday, April 23, 1997.

                                WITNESS

RICHARD TAFEL, LOG CABIN REPUBLICANS

    Mr. Istook. I believe we have Richard Tafel, of the Log 
Cabin Republicans, as our next witness. Understanding the time 
limitations, the number of people, we are attempting to hold it 
to five minutes. I do not know if Mr. Young did, but we will 
try to give some little signal, a tapping or some signal when 
you are at about four and a half minutes to kind of five you 
time to wrap up. Please proceed, Mr. Tafel.
    Mr. Tafel. I would like to thank this committee for the 
opportunity to testify on the important issue of the Ryan White 
CARE Act. I am Richard Tafel, executive director of the Log 
Cabin Republicans.
    Before addressing the current and future needs for Ryan 
White, let me take a moment to thank this entire committee for 
its support of the Ryan White CARE programs last year. The fact 
that this committee, in conjunction with Senator Arlen Specter 
and the Senate subcommittee, was able to secure a $100 million 
increase above President Clinton's request last fall, clearly 
demonstrates your understanding of this rapidly evolving 
epidemic. I believe that it is safe to say that thanks to your 
leadership there are people alive today who might not have been 
had you not shown leadership on this issue in the last 
Congress.
    The original Ryan White bill was written for an AIDS crisis 
in the late 1980s, and largely focused on urban areas where 
health care systems were overloaded and strained with a 
swelling caseload with very little in the way of effective 
therapies. The 1990 act focused largely on an epidemic that is 
undergoing a transformation even today, one which we may soon 
have a completely different set of funding needs to be met by 
the Federal response.
    By 1995, the disease was no longer simply an urban problem. 
There were people with AIDS in every State. Old formulas 
designed for the disease in 1990 were changed to ensure 
fairness and equity for people with AIDS wherever they lived in 
this country. However, with an epidemic like AIDS, none of us 
has a crystal ball with which we can completely see the future.
    As we were all still putting the final touches on the 1996 
reauthorization, science brought about dramatic changes in the 
epidemic. The availability of new drugs has brought the first 
really good news during this epidemic. Protease inhibitors 
taken in combination with nucleoside analog drugs have brought 
about dramatic results in many people with AIDS. Viral loads 
have decreased to almost unreadable levels, some immune systems 
have rebounded, and people with AIDS have risen out of hospital 
beds to return to work. Early intervention with these drug 
combinations have shown that many recently infected HIV 
patients may be spared the onset of AIDS for a much longer 
period of time than without the therapies.
    By its very nature, a program like Ryan White, which is 
built to serve the needs of people with AIDS, and is only 
reauthorized every five years, requires a responsive 
appropriations process that keeps pace with the shifts in an 
unpredictable epidemic. The committee has shown through its 
actions last fall and by holding hearings now that it is 
willing to show leadership where others have offered rhetoric. 
As people with AIDS begin to use the protease inhibitors and 
combination therapy, the AIDS Drug Assistance Program, known as 
ADAP, which had been developed largely to support only one drug 
therapy, has been used very sparingly in the past years. ADAP 
was created to fund drug access for those patients not poor or 
sick enough to qualify for Medicare, yet not adequately 
insured.
    Throughout 1996, people who never used any AIDS drugs were 
hearing the good news about the combination therapies and 
seeking to use them. The influx of sudden demand of these life-
saving and life-extending drugs stressed the ADAP programs 
around the country to the breaking point. Many States were wary 
to add the new drugs to their ADAP formularies for fear the 
program would be overwhelmed. Other States saw their ADAP 
programs literally crash and close from the strain. So, in a 
sense, it was the best of times and the worst of times.
    To add another dilemma to this equation, patients who begin 
using the protease inhibitors and then suffer an interruption 
in their treatment may develop a resistance to the drugs 
rendering them ineffective once the treatment is resumed.
    Congress responded in 1996 with a series of emergency 
increases for Ryan White. But the impact of these new drug 
therapies is widening and we can not yet say the problem of 
access and consistency of care is solved. Unless the safety net 
is in place adequately meeting the needs created by these new 
class of patients, people with AIDS will face a disincentive to 
go back to work, and will continue using the therapies that 
would keep them on Medicaid at a higher cost to the Government 
and possibly shortening their lives.
    We must all be committed to meeting the needs of people 
with AIDS in a team response, and the priority of every member 
of this team should be to save and extend as many lives as is 
possible with the funds that we have available in every sector. 
The Federal Government must take a lead by ensuring that 
through Ryan White CARE Act the ADAP program in Title II will 
have the needed increase of approximately $130 million to meet 
the needed projection for 1988. Additionally, State Governments 
must play their part in ensuring that they provide their share 
of funds to meet the Federal leadership. AIDS service providers 
should be looking immediately toward shifting funds and 
adapting their missions to focus to meet the new realities of 
this epidemic. ADAP program requires that States get the best 
price possible for breakthrough drugs, and drug makers, too, 
must continue to do what they can to help States achieve that 
goal.
    The New York Times recently reported a drop in the number 
of deaths from AIDS in New York City, and public health 
officials credited the success to the increased funding in the 
Ryan White CARE Act. How many programs does this committee 
appropriate funds for where you can actually see these dramatic 
results? How many programs can so clearly draw a direct line 
between a targeted funding increase and saving lives?
    I believe the Ryan White Care Act is a successful program 
which can meet the needs of patients of our Nation's most 
devastating epidemic. I hope this committee will again show the 
leadership it has shown in the past by meeting a tangible need 
that can literally save and extend people's lives. Thank you.
    [The prepared statement of Richard Tafel follows:]

[Pages 1474 - 1479--The official Committee record contains additional material here.]


    Mr. Istook. Thank you very much. We appreciate your coming 
here today to testify.
                              ----------                              

                                         Wednesday, April 23, 1997.

                                WITNESS

HON. DANIEL E. BOSLEY, REPRESENTATIVE IN THE MASSACHUSETTS HOUSE OF 
    REPRESENTATIVES

    Mr. Istook. I believe we now have State Representative 
Daniel E. Bosley. Representative Bosley is here on behalf of 
Council of State Governments. Representative Bosley, welcome.
    Mr. Bosley. Thank you very much, Mr. Chairman. I appreciate 
the time. For the record, my name is Dan Bosley. I am a State 
Representative from Massachusetts, and I am here representing 
not only the House of Representatives in Massachusetts, but 
also I am here as an active member of the Council of State 
Governments' Eastern Regional Conference (CSG-ERC). CSG is one 
of the Nation's largest public interest groups whose members 
include governors, State legislators from the 50 United States 
and its territorial possessions. The Council is organized by 
regions of States or conferences; the ERC encompasses the 
northeast States, Puerto Rico, and the Virgin Islands. My 
testimony today expresses the concerns of their members, as 
well as the Massachusetts Legislature.
    I appreciate the opportunity to provide testimony as you 
deliberate your fiscal year 1998 appropriations for the Low-
Income Home Energy Assistance Program, LIHEAP. I strongly 
support the continued funding for LIHEAP since it provides 
essential assistance to the region's low-income elderly, 
disabled, and the working poor households to pay for their 
winter heating bills.
    LIHEAP has provided assistance to almost 2 million low-
income households in the eastern region. About 40 percent of 
those assisted have at least one family member who is elderly 
or disabled, and close to 90 percent have incomes of less than 
$12,000. I am sure that these are statistics you have all heard 
in the past as LIHEAP has been around for a while. Such numbers 
become more real to me when I think of them in terms of my own 
State. In Massachusetts we have 143,482 households--over 
300,000 people--that relay on the LIHEAP program. These are 
among the neediest citizens of the Commonwealth.
    LIHEAP funding has experienced drastic cuts in the past ten 
years, from an initial appropriation of $2.1 billion in 1985, 
to $1 billion in fiscal year 1997. What this means for 
Massachusetts is that in 1985, the Commonwealth received nearly 
$87 million in LIHEAP funding, whereas last year we received 
only $46 million. The eligible participants of LIHEAP continue 
to grow as funding continues to be cut. Who can be expected to 
assume this cost?
    In Massachusetts, we have some very innovative programs; as 
a matter of fact, we received a REACH award last year for 
innovation within the LIHEAP program. We have tried to pick up 
as much as we can, assume the cost as much as we can. The State 
has picked up some of the cost, we have local foundations that 
have picked up costs, and, as eligible constituents have grown 
for this program, our utilities have picked up a tremendous 
amount of the cost. But all of those dollars have been 
stretched and at this point the glue that holds them altogether 
so that we can link them altogether is the Federal dollars.
    LIHEAP thus far has been a very successful cost-effective 
program in helping low-income households pay their energy 
bills. It helps prevent fuel supply shut-offs, spares limited 
dollars to be used towards purchasing other basic necessities. 
The funding cuts since the last three authorizations have 
forced States to tighten their eligibility standards and, in 
some cases, reduce benefit levels. As was the case in 
Massachusetts this winter, thousands of households exhausted 
their maximum LIHEAP allowance by mid-January and were faced 
with the possibility of having to survive the coldest days of 
winter without assistance. The release of emergency funds 
helped us to alleviate that position. We still had families 
that ran out of LIHEAP funding.
    LIHEAP is the foundation for a whole system of public and 
private programs and policies that help to maintain safe and 
affordable energy services for low-income households. Only 
LIHEAP can provide a sufficient cash grant to permit Federal, 
State, utilities, and private resources to leverage each other 
to provide coordinated responses. States have been taking steps 
to leverage LIHEAP funding by actively supporting partnerships 
with utilities and other fuel providers. In Massachusetts, I 
might add, $46 million is what we received in LIHEAP, utilities 
ponied up $38 million in funds. We were able to almost double 
that because of the LIHEAP funding. Programs include utility 
rate discounts, arrearage forgiveness, State supplemental aid.
    In addition, States have encouraged facilities to establish 
fuel funds allowing individuals to contribute funds to help 
poor families meet their home energy expenses. In my State of 
Massachusetts, for example, we have developed several 
innovative approaches to stretch the LIHEAP dollars for heating 
oil purchases. First, the State requires the participating 
heating oil dealers agree to accept a rate of payment equal to 
25 cents over wholesale price, resulting in a discount of 
between 10 and 15 cents per gallon. While this may not seem 
like much, for some households this can result in a discount of 
close to $150 over the course of the winter heating season.
    While program statistics and descriptions can certainly 
help explain the operational aspects of LIHEAP, what is more 
important to me are the people who are behind the numbers. My 
district has suffered greatly in recent years due to defense 
shutdowns and the movement of manufacturing plants. For many of 
the households in my district the availability of LIHEAP has 
made the difference between staying warm in the winter and 
having to choose between the purchases of medicine, food, and 
other necessities. While I talk about statistics, for me, 
having talked to my local CAP agency, the person that doles out 
the LIHEAP money, it is not statistics but it is the family 
with the one, six, and the thirteen year old, where both 
parents work, the wife can not work full-time because there is 
no day care, there is no health insurance at the plant that the 
husband works at, so they spend $100 a week to cover their 
health insurance. LIHEAP helps them to bridge the payments for 
their fuel in the winter time. It means the family whose UI has 
run out, they are trying to keep the mortgage payment going, 
they are a working family, and basically these are working 
families that are using this to gap together payments in the 
wintertime so that they can continue both to feed their 
families and heat their households.
    Mr. Chairman, as a fellow legislator, as a committee chair, 
and as a past conferee of State budgets, I am aware of the 
pressures that this committee faces. I was listening to the 
competing interests for money as I was sitting here. I know 
that you have a competing interest of balancing the budget and 
meeting the social needs of this Nation. I am also involved in 
the review of many competing and worthwhile programs. Yet, 
after much reflection, I believe that the LIHEAP program is a 
program that should be maintained and supported because of the 
vital services that it provides.
    I appreciate the opportunity to testify before this 
subcommittee today. I am confident that you will do the right 
thing.
    [The prepared statement of Daniel Bosley follows:]

[Pages 1483 - 1485--The official Committee record contains additional material here.]


    Mr. Istook. Thank you very much. We appreciate your 
testimony, Representative Bosley.
    Mr. Bosley. Thank you, Mr. Chairman.

                              ----------                              

                                         Wednesday, April 23, 1997.

                                WITNESS

ROGER GUARD, MEDICAL LIBRARY ASSOCIATION

    Mr. Istook. On behalf of the National Medical Library 
Association, Mr. Roger Guard. Welcome, Mr. Guard. Thank you for 
coming. Please proceed.
    Mr. Guard. Thank you, Mr. Chairman. I am Roger Guard, 
Director of University of Cincinnati Medical Center Academic 
Information Technology and Libraries. I speak today on behalf 
of the Medical Library Association and the Association of 
Academic Health Sciences Libraries in support of increased 
fiscal year 1998 funding for the National Library of Medicine.
    The Medical Library Association is a professional 
organization that represents over 5,000 members involved in the 
dissemination of biomedical information in support of patient 
care, education, and research. The Association of Academic 
Health Sciences Libraries is composed of the directors of 
libraries of 142 U.S. and Canadian medical schools belonging to 
the Association of American Medical Colleges.
    Mr. Chairman, last month our joint legislative task force 
was present when Doctor Donald Lindberg, NLM's Director, 
testified before this subcommittee. We were impressed with the 
tremendous progress NLM has made especially in the areas of 
information technology, telemedicine, and the Visible Human 
Project.
    NLM's outreach programs are designed to bring the most 
current medical information to health professionals. In 1991, a 
major medical journal published an article in which physicians 
reported positive changes in their diagnoses, choice of tests 
and drugs, length of hospital stay, and advice given to 
patients as a result of information provided by medical 
librarians.
    Between 1989 and 1994, NLM has supported 275 outreach 
projects involving over 500 institutions. Outreach projects are 
geared toward health professionals practicing in under-served 
geographic regions, those serving minority populations, and 
those needing critical HIV/AIDS information. Through the 
national network of Libraries of Medicine over 20,000 health 
professionals have learned more about medical information 
resources. However, outreach will not be complete until every 
health professional in this country is familiar with NLM's 
resources.
    NLM also works with other agencies to connect hospitals and 
biomedical institutions to the Internet. In addition, high 
performance computing and communications technology provides 
scientists and researchers with the computing power and 
networks necessary to create and share complex biomedical 
models.
    NLM is the critical investment agency for improving access 
to health care information. The health sciences library 
community applauds Congress for having the foresight to provide 
NLM with resources to support telemedicine and testbed network 
projects. These technologies will have a profound influence on 
future health care in this country, especially combined with 
the universal service provisions of the Telecommunications Act 
of 1996. It is essential that Congress provide adequate funding 
to NLM for the HPCC program and the next generation Internet 
initiative in fiscal year 1998 and beyond.
    NLM's long-term success depends on basic library services. 
Demand for basic services increase at a rate of 10 to 15 
percent per year. Maintaining current standards will become 
more and more difficult if NLM's staffing levels and fiscal 
resources are allowed to decline. We urge Congress to restore 
staffing positions and the necessary financial support for them 
so that NLM can meet its increasing service needs and ensure 
that the quality of programs is not compromised.
    NLM's MedLine is the world's premiere biomedical 
information resource. In southern Ohio, northern Kentucky, and 
southeastern Indiana, the University of Cincinnati Medical 
Center and over 35 public and private partners provide consumer 
access to high quality health information via the World Wide 
Web. Although this demonstration project called ``NetWellness'' 
was seeded by a U.S. Department of Commerce matching grant, 
NLM's Medline remains the core information resource desired by 
NetWellness users. We've learned that Medline is nearly as 
important to consumers as it is to health professionals.
    The Medical Library Association and the Association of 
Academic Health Sciences Libraries strongly believe that the 
National Library of Medicine should receive an increase. Basic 
services will then be maintained and IRH and HCCP activities 
will expand significantly. Therefore, Mr. Chairman, we 
recommend a 9 percent increase in funding for NLM, bringing the 
library's total fiscal year 1998 appropriation to $164.7 
million.
    Mr. Chairman, thank you very much for the opportunity to 
present our views.
    [The prepared statement of Roger Guard follows:]

[Pages 1488 - 1495--The official Committee record contains additional material here.]


    Mr. Istook. Thank you very much. We appreciate your taking 
the time and effort to be with us.

                              ----------                              

                                         Wednesday, April 23, 1997.

                                WITNESS

A. GERALD ERICKSON, METROPOLITAN FAMILY SERVICES

    Mr. Istook. Our next witness is Mr. Gerald Erickson, 
president, Metropolitan Family Services. Mr. Erickson, welcome. 
Please go right ahead.
    Mr. Erickson. Thank you, Mr. Chairman, for the opportunity 
to present this testimony. My name is Jerry Erickson. I serve 
as president of Metropolitan Family Services in Chicago. It is 
the oldest and largest not-for-profit, non-sectarian human 
service organization in Illinois. We operate through some 25 
neighborhood centers in the City of Chicago, suburban Cook 
County, and in west suburban DuPage County. We provide a range 
of services to something over 100,000 families every year.
    Our mission is to build strong families. We do this work 
primarily with private funding with some supplementation from 
Government sources. Sometimes families need just one service, 
perhaps economic assistance to tide them through a temporary 
financial crisis, or home health services to help a senior 
remain in their home. In other situations, families need access 
to a comprehensive network of services. For example, a family 
confronting the first psychotic episode of a teenager may need 
mental health services for the child, advocacy for the family 
in terms of a proper school placement, counselling for the 
family to cope with the grief of seeing a healthy child become 
sick with life-long consequences. We provide a range of 
services within our network so that families can get the help 
they need when they need it.
    Metropolitan Family Services works with the family system. 
When one family member is at risk, the entire family is 
affected. When families are strong, stable, and self-
sufficient, communities are strengthened and all of us reap the 
benefits.
    While our focus on working with families has remained 
constant throughout the 140 years of our history, the needs of 
families have changed as culture and public policies have 
shifted. As communities, public systems, and families ask for 
our help, we respond. Over the past few years, we have begun to 
develop model programs to meet the changing needs of families 
in the area of Medicaid managed care, adoption services, and 
post-Head Start work with schools.
    Several characteristics of the Medicaid program make 
providing health services through managed care particularly 
complex: medicaid enrollment is typically short, lasting one 
year on the average; beneficiaries are often in poorer health 
than the general population and may represent an increased cost 
to managed care organizations; and Medicaid beneficiaries tend 
to live in communities with a limited number of health care 
providers, making it difficult to build networks in these 
communities.
    In order to realize the benefits of managed care, Medicaid 
beneficiaries must learn how to choose and how to use a managed 
care plan, and must be educated to change their health-seeking 
behavior to rely more on primary and preventive care than 
emergency care services. In partnership with our sister agency 
in New York, the Community Service Society, Metropolitan Family 
Services is in the process of developing an innovative program 
that would guide Medicaid recipients in accessing appropriate, 
effective, and cost-efficient primary health care through 
managed care. The workshops will be facilitated by trained 
volunteers who are residents of the targeted communities and, 
therefore, peer educators.
    Metropolitan Family Services asks that the Committee 
encourage HCFA to evaluate the degree to which consumer 
education programs assist vulnerable populations in urban, low-
income settings to understand how to use preventive care for 
themselves and their children.
    Congress and the Administration want to double the rate of 
adoption by the year 2002 in order to decrease the amount of 
time spent in foster homes. We agree with the commitment to 
increasing adoptions, but we also believe that attention needs 
to be paid to what makes for a successful adoption within a 
family. It is crucial to provide services to match families 
with children, to educate families about what to expect from 
their child, and how to cope with the trauma unique to that 
child. Training and support from other adoptive families can 
help families overcome snags in the relationships as the 
adopted child enters new stages of his or her life.
    We are proud of the fact that in our work with over 400 
troubled adoptive families, we have only seen two disrupted 
adoptions. We believe that, as Congress and the Administration 
move to increase adoptions, funding should also be made 
available for services to help these families deal with 
difficult children when love and structure is not enough.
    Finally, from reviewing literature for Head Start, we know 
that without follow-up work the gains of Head Start are often 
lost by the third grade. So when our Head Start classes 
graduated and began kindergarten, we developed a Jump Start 
program in partnership with three schools who would receive our 
children. The goal of the Jump Start program is to consolidate 
the gains of a Head Start experience by working with the 
schools and the parents to support parental involvement in the 
school lives of their children. It is too early to document 
results, but initial conversations with parents and teachers 
are very favorable.
    We ask that the committee encourage the Department of 
Education to consider demonstrating and evaluating programs 
such as Jump Start so that the success of Head Start turns into 
a success for the lifetime of our children.
    Thank you for this opportunity to testify.
    [The prepared statement of Gerald Erickson follows:]

[Pages 1498 - 1504--The official Committee record contains additional material here.]


    Mr. Istook. Thank you very much, Mr. Erickson. We 
appreciate your testimony.
                              ----------                              

                                         Wednesday, April 23, 1997.

                               WITNESSES

ERIN BOSCH AND KATE KLUGMAN, THE NATIONAL COALITION FOR HEART AND 
    STROKE RESEARCH

    Mr. Istook. Next, Ms. Erin Bosch and Ms. Kate Klugman. I 
understand you are here on behalf of the National Coalition for 
Heart and Stroke Research. Thank you both for coming.
    Ms. Bosch. Mr. Chairman, I am here to testify on behalf of 
the National Coalition for Heart and Stroke Research. My name 
is Erin Bosch. I am fifteen years old. Six months ago tomorrow, 
I was in Minnesota having open heart surgery at the Mayo 
Clinic. I have a genetic disease called hypertrophic 
cardiomyopathy. It causes the muscle below my aorta to balloon 
out and partially blocks the flow of blood through my heart.
    This disease causes high risk for heart attacks and sudden 
deaths from dangerous heart rhythms. The surgery I had is 
designed to lessen the obstruction by shaving away some of the 
muscle. This procedure was originally pioneered at the National 
Institutes of Health. My surgery was our last resort aside from 
transplanting. Before this surgery, NIH had implanted a 
therapeutic pacemaker in me because they had been shown to 
reduce the obstruction caused by the extra heart muscle.
    Without adequate funding for research, these options would 
not have been possible for me. Most people think heart disease 
is a problem that affects only older people. I am living proof 
that they are wrong. According to recent studies, 36 percent of 
young athletes who die suddenly have hypertrophic 
cardiomyopathy. Congenital heart disease is still the number 
one birth defect of children. Your child or grandchild could be 
born with heart disease.
    Thank you for the opportunity to speak to you today. I am 
hopeful that you will not forget about young people like me who 
depend on you for adequate funding for heart research so that 
we can live long, productive lives.
    Kate.
    Mrs. Klugman. Mr. Chairman, honorable members of the 
committee, it is a privilege to speak to you today. My name is 
Kate Klugman. I am here on behalf of the National Coalition for 
Heart and Stroke Research. I am also, most importantly, a 
mother and a wife.
    I know many people feel skeptical about Congress. Many 
people believe that Government can do no good and that 
everything in Washington is about the all mighty dollar. I am 
here to say that they are wrong. You as a body have done great 
things for those unfortunate people who, through no fault of 
their own, are sick and in real need of help. The Americans 
with Disabilities Act, and the help you have given to research 
to prevent, cure, and lessen the effects of stroke and heart 
disease are some of the finest things to ever come out of any 
Government.
    I know you face hard challenges in today's world. What you 
spend here you cannot spend there. You are faced with very, 
very difficult choices. The true measure of a society is how it 
treats the least of its members, how it cares for the sick and 
the needy.
    I am only 34 years old. Before my devastating stroke in 
June of 1995, I was a mother, a wife, an athlete, and a person 
vitally interested in my community. Now, after suffering a 
double brain stem ponds stroke, which left me totally 
paralyzed, unable to even blink, after a miraculous recovery, I 
am still a mother, a wife, and someone vitally interested in a 
broader community. Only now, I am all these things without the 
use of the left side of my body. Without the funding you have 
already given to fight stroke and heart disease, I would be 
none of these things.
    After my stroke, I suffered from ``locked in syndrome.'' I 
spent 50 days in the ICU. During those 50 days I was conscious, 
I could feel everything, I could feel pain, but I could not 
move any part of my body. I was totally trapped in my body, fed 
by a tube surgically placed in my stomach, breathing only by 
using a tube surgically placed in my throat. I could not speak, 
could not eat, could not drink, and could not move from the 
rigid death-like position my body had assumed. There was little 
hope for me to even live through the night, and, frankly, my 
doctor hoped I would not live since my future seemed so bleak.
    I am a very lucky woman. I lived. And more than that, I 
overcame the locked-in syndrome. My miracle did not come about 
without much prayer and much knowledge and great skill on the 
part of my doctors. The knowledge and skill my doctors 
possessed is something that this Government, acting at its 
best, helped make possible. Without years of research and many 
dollars provided by many men and women like you, I would not be 
here to talk to you today.
    Of course, the story does not end with my leaving ICU, it 
only begins there. I have been through countless hours of 
therapy. Physical therapy has been developed to its present 
stage with the help of funds provided in part by this 
Government. I have seen my own life come to a point where I 
could do nothing for myself. I found myself at 33 wearing a 
diaper and unable to control my own bodily functions. I saw 
myself unable to talk for months. All the communication I had 
with the outside world was limited to my blinking yes and no. I 
will not mention the physical pain for it was transitory. The 
tears of my daughters, eighteen month old Rachel and three year 
old Stephanie, would be enough if you saw them to convince you 
to fund research as one of your top priorities. If you could 
see what this has done to my husband, relatives, you would 
realize that stroke and heart disease is not just a problem 
that strikes one person; it strikes families and whole 
communities.
    Every minute in the United States someone suffers a stroke. 
Annually, stroke strikes more people than cigarette smoking 
kills. Each year over 500,000 people have a stroke. Nearly one-
third will die within a few months. Almost all the survivors 
will be disabled for the rest of their lives. Heart disease and 
stroke cost this Nation over $259 billion in medical expenses 
and lost productivity in 1997. If we hope to save Medicare, 
which is one of this Congress' top priorities, we must learn to 
spend medical dollars wisely. With research we can prevent and 
cure stroke, thus saving billions of dollars and, in the 
bargain, saving innocent people from a living death. There is 
no greater good that you as a Congress could possibly do than 
to help the dedicated men and women who fight daily to prevent 
and cure stroke and heart disease. I pray you will generously 
help us.
    I will close by asking you to be just a little selfish. For 
if I can stand here today when yesterday I was the picture of 
health, so can you stand here tomorrow also the victim of 
stroke. I pray it would not happen to you, but within the next 
ten years it will happen to some of you, and it may happen to 
all of you. So please help, for in helping any of us, you help 
all of us. Thank you.
    [The prepared statement of Erin Bosch and Kate Klugman 
follows:]

[Pages 1508 - 1511--The official Committee record contains additional material here.]


    Mr. Istook. Thank you very much, Ms. Bosch, Mrs. Klugman. 
We very much appreciate your testimony.

                              ----------                              

                                         Wednesday, April 25, 1998.

                                WITNESS

PATRICK WATERS, MONTGOMERY COUNTY, MARYLAND STROKE CLUB

    Mr. Istook. Now, Mr. Patrick Waters, president of the 
Montgomery County Stroke Club.
    Mr. Waters. Mr. Chairman, distinguished members of the 
committee. I am Patrick Waters and I am a left hemiplegic 
stroke survivor of seven years. I am currently the president of 
the Montgomery County, Maryland Stroke Club. The stroke club is 
a non-profit organization for stroke survivors and their 
families, and numbers about 400 as well as about 100 
professionals.
    Stroke can happen to anyone. Stroke is the third leading 
cause of death in the United States. It strikes about 500,000 
Americans each year, killing more than 154,000. Think about 
this, any one of your loved ones could be struck down by a 
stroke. It happened to three of our United States Presidents. I 
pray that none of you or yours will ever know this terrible 
suffering.
    My stroke occurred in February of 1989. I had taken an 
early retirement and I planned to begin a second career, 
travel, and manage my investment portfolio. The last two of my 
four children were nearly finished in college, and everything 
seemed to be going as planned. My stroke was due to an AVM, 
which, as far as I can understand, is a birthmark in the brain.
    My stroke was devastating enough, but was compounded by a 
severe fall in the hospital that involved a second hemorrhage. 
Soon after my surgery, I began to have severe burning pain on 
my entire paralyzed side. It was described as post-stroke 
syndrome by some, as supersensitivity by others, and also as 
thalamic pain since my AVM was in the thalamus. The National 
Institutes of Health was the only place where I was able to get 
literature on this condition.
    The burning paid I suffer is encountered when I walk on 
rugs. Shock waves travel up my weak side. I feel this pain 
whenever anyone or anything touches my left side. Even my own 
arm assaults me when it rests on my lap or dangles at my side. 
This pain is extremely exhausting. In recent years, I have 
heard from other stroke survivors who say they too suffer this 
pain. At this time, we are mostly told to learn to live with 
it.
    The long arduous task of physical therapy so I could walk 
again was lengthy, frustrating, and extremely expensive. But at 
least I had hope. With this pain, I feel despair for myself and 
others because, until help is found, we suffer.
    Please allocate $93 million for National Institute of 
Neurological Disorders and Stroke-supported stroke research and 
prevention in fiscal year 1998 so those in pain may find relief 
and, if not for us, for those who may be struck in the years to 
come. Being associated with a stroke club you see many young 
people whose futures are altered forever by stroke, and most 
have no future. Please give them hope through this funding.
    As a retired electrical engineer on the space program, I 
know this country is capable of achieving the near impossible. 
I believe this country can, and will, be the first to prevent 
strokes and possibly even undo the damage they have wreaked.
    Mr. Chairman, I thank you for allowing me to bare my soul.
    [The prepared statement of Patrick Waters follows:]

[Pages 1514 - 1515--The official Committee record contains additional material here.]


    Mr. Istook. Mr. Waters, I sure thank you for coming and for 
being willing to share your personal experience.
    Mr. Waters. Mr. Chairman, I would like to introduce my 
lovely wife, just to let you know my luck isn't all that bad. 
[Laughter.]
    Mr. Istook. Mrs. Waters, so nice of you to be here.

                              ----------                              

                                         Wednesday, April 23, 1997.

                                WITNESS

JAN SHAPIRO, THE NATIONAL ALOPECIA AREATA FOUNDATION

    Mr. Istook. I believe we have next Ms. Jan Shapiro, on 
behalf of the National Alopecia Areata Foundation. Please go 
right ahead.
    Ms. Shapiro. Thank you. Good afternoon, Mr. Chairman. My 
name is Jan Shapiro, and I have had alopecia areata for fifteen 
years. The first twelve years of my life with alopecia I just 
had little spotty patches of hair loss on my head. Three years 
ago, I lost all of my hair; I have no hair whatsoever. This is 
known as alopecia universalis. I am also the support group 
leader for alopecia areata in the D.C. metropolitan area.
    I am testifying on behalf of the National Alopecia Areata 
Foundation, NAAF. NAAF is the largest organization in the 
Nation dedicated to finding a cure for alopecia areata. It also 
provides support for those with alopecia through a publication 
program and support groups. As a support group leader of NAAF, 
I am sometimes the first person outside the medical community 
that a person turns to for help and support.
    NAAF is also a member of, and is currently headquarters 
for, the Coalition of Patient Advocates for Skin Disease 
Research. The Coalition, which is a voluntary organization, 
receives no public or private money, and provides an umbrella 
to over 22 lay skin groups. These groups represent millions of 
people who suffer from a wide range of different skin diseases.
    Alopecia areata is a disease that strikes over 4 million 
Americans. Alopecia areata is basically the loss of hair. To 
some it is just a quarter-size spot of hair that usually can be 
covered by other hair that a person has. But for others it is 
the loss of every single hair follicle on their entire body, 
and again this is alopecia universalis; this is what I have. 
The condition strikes members of all ethnic groups, but it 
affects women and children most often.
    Hair loss has several effects. It reduces the protection 
for the body that the hair normally provides. The loss of 
eyelashes means that even the simple act of opening and closing 
one's eyes to get rid of dust is a difficult process for a lot 
of people. Alopecia areata is not simply a physical problem; it 
has serious psychological effects for a lot of people. When 
many people first discover their hair is falling out, they are 
absolutely devastated by this. They think they are the only 
ones in the world with the disease. Many times they go to their 
doctors and even their physicians have little knowledge as to 
what the disease is.
    Unfortunately, in our society the lack of information is 
not the only problem. People with alopecia areata are 
vulnerable to stares and rude comments from others. People with 
alopecia areata have lost their jobs because of their 
condition. A noted news anchor lost his on-air job because he 
was suddenly perceived as being unappealing. This lack of being 
appealing or being considered normal causes many people to lose 
confidence in themselves and then they begin to withdraw from 
society. This is especially, especially devastating for 
children who have this.
    Over half the people with this condition get the first 
symptoms between the ages of five and nine years old. Recently, 
two parents in tears called me about their children, two local 
girls here in the Fairfax area; one was twelve, the other was 
fourteen. They started doing less with friends, they are not 
going outside as much, and their grades are falling at school. 
They are afraid of harassment and non-acceptance, of not being 
or not feeling normal.
    Fortunately, people can help. In many of our support 
groups, people learn how they can help themselves both 
cosmetically and psychologically. The real solution here will 
be when we finally find a cure for alopecia areata.
    NAAF has raised and provided almost $1.5 million for 
research studies on the genetic structure of hair, the function 
of the immune system, and for supporting non-human research 
studies looking for the cause of alopecia areata. Part of our 
research program is to continue our work with the National 
Institute of Arthritis and Muscular Skeletal and Skin Diseases, 
NIAMS. One of the results from this joint program is that NIAMS 
funded a significant study on the structure of the disease. 
Working together in this private-public partnership is a 
significant step towards finding a cure finally. We hope to 
continue this relationship with NIAMS.
    The Coalition of Patient Advocates for Skin Disease 
Research asks that you too continue to support us, please. With 
an increase of 9 percent, much more can, and will, be done. 
This increase will allow the Institute to increase its ability 
to finance more research projects and support more programs 
that will help over 60 million people who are affected by skin 
diseases. We also believe that when a cure is finally found for 
any of these diseases, there is a good chance that it will help 
in finding a cure for many of the other skin diseases.
    Thank you so much for your time.
    [The prepared statement of Jan Shapiro follows:]

[Pages 1518 - 1522--The official Committee record contains additional material here.]


    Mr. Istook. Thank you very much, Ms. Shapiro.

                              ----------                              

                                         Wednesday, April 23, 1997.

                                WITNESS

DALE GALASSI, THE NATIONAL ASSOCIATION OF COMMUNITY HEALTH CENTERS, 
    INC.

    Mr. Istook. On behalf of the National Association of 
Community Health Centers, Dale Galassi. Mr. Galassi, I 
understand that you have a community health center in Mr. 
Porter's district. I'm sorry he wasn't able to be here 
personally to greet you. I can only try to do so on his behalf.
    Mr. Galassi. Thank you very much. To the Chairman and 
members of the committee, I thank you for this opportunity to 
testify. My name is Dale Galassi. I am here on behalf of the 
National Association of Community Health Centers. A written 
statement has been submitted for the record, so I will 
summarize my remarks.
    I serve as the executive director of the Lake County 
Community Health Center in Lake County Health Department 
located in northeastern Illinois. We are an urban county of 
600,000 people, with 26,000 Medicaid-eligibles and 50,000 
under-insured persons. We have a rich history of 40 years of 
providing primary care and numerous other services to our 
community.
    Our community health center now serves approximately 24,000 
patients, 50 percent of whom are uninsured. Our constituency is 
primarily Hispanic and African-American. We are the only real 
alternative to expensive emergency room care. Yet, there are 
many patients in our community which we cannot serve due to a 
lack of resources.
    Health centers serve children and adults throughout our 
country. We are local, non-profit, community-owned programs 
providing comprehensive primary and preventive care to low-
income and medically under-served people in both urban and 
rural America. Health centers are governed by community members 
who have an interest and commitment to affordable health care. 
One in every ten uninsured persons and one in every seven 
uninsured children in our country use health centers. The 
number of uninsured Americans is growing rapidly and could 
reach 50 million over the next several years. Nearly three-
fifths of those are members of low-income working families who 
cannot afford to buy health insurance and, therefore, have no 
place to go for health care except costly hospital emergency 
rooms or to more efficient health centers.
    Repeatedly, independent studies and reports have shown 
health centers are one of our more efficient delivery systems 
in America. Every $100 million in grant funds leverage another 
$200 million in other resources and provides care to another 1 
million patients. Health centers create jobs, provide an 
economic base, make better workers and students.
    Health centers make a difference. Yet, health centers are 
being threatened by the continuing erosion of private insurance 
coverage. Over the past three years, health centers have added 
2 million new patients, of which 1 million are uninsured. This 
growth in new uninsured health center patients is wide spread 
and underscores the declining ability of other providers in all 
communities to continue to serve the uninsured. At my center, 
we have experienced a significant increase of uninsured persons 
coming to our doors for service. We see 50 percent of our 
patients as uninsured. Our situation is by no means unique. 
Other health centers in Illinois report as much as a 35 percent 
increase in uninsured in the last few years alone.
    NACHC and health centers across the country appreciate the 
Chairman and members of this committee for recognizing the 
importance of the Consolidated Health Centers program and for 
providing an increase for the centers in 1997. In particular, 
we thank Congressmen Bonilla and Dickey for their leadership in 
support of health centers. The new funds for 1997 will enable 
some 30 new health centers, including, I hope, Lake County, to 
care for 120,000 new uninsured patients across our country. 
However, additional Federal investment in health centers is 
needed to ensure the availability of primary and preventive 
health care in more medically under-served communities. As the 
number of uninsured persons increases, we must have a system in 
place that will provide health care for the most vulnerable and 
at-risk populations. Our health center is already in place, it 
is cost-effective, they are efficient, accountable, and they 
work. We urge you to build upon them.
    On behalf of the National Association of Community Health 
Centers and Lake County, I am asking your support for increased 
funding for fiscal year 1998 for the Consolidated Health 
Centers program. Please consider the following four 
recommendations: Consolidated Health Centers, community, 
migrant, homeless and public housing at $882 million; the 
National Health Service Corps at $145 million; black lung 
clinics at $5 million; and Ryan White AIDS, Title III-B, at 
$13.6 million. With these resource levels, the health center 
would serve an additional 650,000 low-income uninsured 
individuals in 1998 alone. This funding request is an 
investment. If funded adequately, the expanded presence of 
health centers and the availability of basic health services 
will contribute to a healthier, more productive America.
    Mr. Chairman and members of the committee, thank you for 
the privilege to speak to you today.
    [The prepared statement of Dale Galassi follows:]

[Pages 1525 - 1533--The official Committee record contains additional material here.]


    Mr. Istook. Thank you, Mr. Galassi. I know that the 
Chairman will be certain to go through your remarks.
    Mr. Galassi. Thank you very much.
    Mr. Istook. We appreciate your testimony.

                              ----------                              

                                         Wednesday, April 23, 1997.

                                WITNESS

FRANCES B. PHILLIPS, THE NATIONAL ASSOCIATION OF COUNTY AND CITY HEALTH 
    OFFICIALS

    Mr. Istook. On behalf of the National Association of County 
and City Health Officials, Frances B. Phillips. Welcome, Ms. 
Phillips.
    Ms. Phillips. Thank you, Mr. Chairman. It is a pleasure to 
be here.
    Mr. Istook. Please go right ahead.
    Ms. Phillips. I am Frances Phillips. I serve as health 
officer for Anne Arundel County and for the City of Annapolis, 
Maryland. The health department that I direct serves about 
467,00 citizens, including several thousand who belong to 
Congressman Hoyer's district. I am here today to represent the 
National Association of County and City Health Officials, which 
serves the Nation's 3,000 local health departments. These are 
the agencies, large and small, in cities, counties, and 
townships that engage in a wide range of essential public 
health services.
    Most of the time, the work of the Nation's local public 
health departments goes on quietly; we go on in the business of 
preventing public health crises. We immunize children, maintain 
surveillance for infectious diseases, and watch out for new 
hazards in the environment. Our successes, in fact, are rarely 
recognized because when we are successful in prevention, 
nothing bad happens. As you know, good news rarely makes the 
news.
    In my county, I am very proud of our many prevention 
accomplishments. For instance, we have a nationally-recognized 
cancer prevention program which has successfully reduced breast 
cancer deaths by 15 percent in the past 5 years.
    What I would like to do for the few minutes that I have 
with you is to explain how a very modest but targeted addition 
to the appropriation for the Centers for Disease Control and 
Prevention's budget can help local health departments maintain 
our most basic function--that is, as first line of defense 
against imminent public health threats.
    Several weeks ago, I know that you will recall, it was 
found that school children in six States had been served frozen 
strawberries which were tainted with the Hepatitis A virus. It 
was local health departments in Michigan that first discovered 
the outbreaks of Hepatitis A, that reported them to State and 
Federal authorities, that led the investigation teams, and that 
ultimately found the cause. It was local health departments 
again that quickly organized programs to locate and immunize 
those children who may have consumed strawberries putting them 
at risk.
    In my county in Maryland last month, we experienced a 
similar sort of public health crisis. A champion college 
athlete in my county died quite suddenly of bacterial 
meningitis. The staff from Anne Arundel County as well as 
Baltimore City, where the student's college is located, 
immediately began identifying and treating with antibiotics 
those who had been exposed. We relied very heavily on rapid 
communication with State and other local health departments in 
order to respond to this widely publicized crisis. We exchanged 
very sophisticated lab data and analysis, we consulted with the 
CDC in Atlanta, and, ultimately, we followed up with a mass 
immunization, getting it done before Spring Break, of thousands 
of campus college students.
    The United States maintains well-trained armed services 
equipped for rapid response to military threats. We need to do 
the same for our local health departments. These are the people 
on the front lines, in the trenches, so to speak, to defend our 
communities from health threats. Local health departments are 
our early warning system.
    However, we are facing mounting challenges on all fronts. 
You heard in previous testimony about new and emerging 
infectious diseases, about the massive restructuring that is 
underway in our health care delivery system, as well as 
continued pressures on county and State budgets. Unfortunately, 
many health departments lack the basic tools with which to deal 
with these emergencies; those tools being training and 
technology. Every local health department needs computer 
modems, we need access to the Internet so that our response can 
be uniform and can be instantaneous when emergencies arise. 
Yet, more than one-third of the Nation's local health 
departments lack basic internet access and 85 percent of local 
health department employees lack access to e-mail. These are 
very standard tools today for rapid communication. They are 
also tools with which we are desperately in need of training in 
order to make use of what public health databases are available 
on the Internet.
    We hope that this subcommittee will consider favorably our 
proposal that $8 million, a modest sum in CDC's $2.2 billion 
budget, be allocated to the Office of the Director for the 
explicit purpose of improving our training and communications 
infrastructure. The need for training is one that I feel 
especially worth emphasizing. Even in a large metropolitan 
health department such as mine, we are continually challenged 
with maintaining up-to-date knowledge base in order to perform 
our skills and to keep our skills sharp.
    Thank you, Mr. Chairman. I appreciate the opportunity to 
come before you. I would be pleased to offer any further 
information you may wish for the record.
    [The prepared statement of Frances Phillips follows:]

[Pages 1536 - 1548--The official Committee record contains additional material here.]


    Mr. Istook. Ms. Phillips, we certainly appreciate your 
testimony. Thank you for coming today.

                              ----------                              

                                         Wednesday, April 23, 1997.

                                WITNESS

ROBERT J. GUMNIT, M.D., THE NATIONAL ASSOCIATION OF EPILEPSY CENTERS

    Mr. Istook. We now have Doctor Robert Gumnit, appearing 
here today on behalf of the National Association of Epilepsy 
Centers. Doctor Gumnit, welcome.
    Dr. Gumnit. Thank you, Mr. Chairman. I am the president of 
MINCEP Epilepsy Care, which is a comprehensive epilepsy center 
in Minneapolis, Minnesota, and I am a clinical professor of 
neurology, neurosurgery, and pharmacy at the University of 
Minnesota. I am here today in my capacity as president of the 
National Association of Epilepsy Centers, which represents the 
60 specialized epilepsy centers in the United States.
    About 2.5 million Americans have epilepsy, a chronic 
neurological condition defined as the occurrence of more than 
one seizure on more than one occasion. Each year about 100,000 
new people are diagnosed with epilepsy. More than two-thirds of 
them are below the age of 25.
    Timely entry into the medical care system, making the 
correct diagnosis right away, and initiating appropriate 
treatment not only of the medical, but also of the 
psychological and social conditions of people with seizures 
have been major goals of the National Association of Epilepsy 
Centers. These goals are particularly important because the 
initial diagnosis of epilepsy is frequently made by primary 
care physicians, most of whom treat a very limited number of 
people with epilepsy. With the increased use of managed care 
and a greater dependence on primary care practitioners for 
managing patients with chronic disorders, it is increasingly 
important that new information be widely disseminated about the 
importance of an early and accurate diagnosis and the variety 
of treatment options available to achieve seizure control. We 
know that many people with epilepsy receive years of inadequate 
treatment and become unnecessarily disabled.
    For these reasons, NAEC has explored avenues within the 
Federal Government to educate health care practitioners and 
people with epilepsy and their families about the benefits of 
early intervention. This subcommittee was instrumental in 
initiating funding of an epilepsy program at the Centers for 
Disease Control. For 1998, NAEC seeks an extension of the CDC 
program at the originally requested level of only $1 million.
    The NAEC, the Epilepsy Foundation of America, and the 
American Epilepsy Society have been active participants in a 
working group with CDC to plan the future course of the 
epilepsy program. We are currently working together on plans 
for a conference to set objectives for improving the health of 
people with epilepsy and seizure disorders. The conference will 
bring experts in the field of epilepsy treatment and research 
together with patients and families afflicted with seizure 
disorders, as well as the public health and managed care 
professionals and primary care providers. Experts will present 
data from existing scientific literature to show that timely 
recognition of seizures and effective treatment can reduce the 
risk of subsequent brain damage as well as disability and death 
from injuries incurred during seizures. We also plan to discuss 
strategies for overcoming barriers to optimal health and 
functioning for people with seizures.
    The intent of the CDC epilepsy initiative is not only to 
improve the care of with epilepsy and seizure disorders, but 
also to contribute to the development of model strategies for 
the care of people with other chronic diseases. While treating 
epilepsy requires specific expertise among providers, the core 
health care services and system elements needed to provide 
optimal care for people with epilepsy is remarkably similar to 
those needed by people with other chronic diseases such as 
diabetes, asthma, and Parkinson's disease. We expect that this 
model epilepsy program fully worked out in the next few years 
will provide effective prevention, early recognition and 
treatment strategies that will not only improve the health and 
reduce the disability of people with seizures, but can be 
extended to individuals with other chronic diseases.
    We would also seek the support of the subcommittee in 
encouraging HCFA to expand its research and demonstration 
activities in improving the care of people with chronic 
diseases. The incidents of seizures among the Medicare 
population is much higher than among middle aged people and 
very, very high among people on medical assistance. We believe 
that ways can be found to provide better care at lower cost if 
we can come up with a systematic approach.
    Finally, I want to commend the subcommittee for its support 
of the National Institutes of Health and its increased budget. 
The epilepsy community strongly urges an increase in the 
neurological diseases budget.
    Mr. Chairman, we live in an era in which we have gone from 
a health care system that provided too many doctors and too 
much treatment to one that many of us fear will provide the 
patient with chronic disease too few doctors and too little 
treatment. That means the treatment has to be right the first 
time.
    Thank you for your support.
    [The prepared statement of Robert Gumnit, M.D., follows:]

[Pages 1551 - 1558--The official Committee record contains additional material here.]


    Mr. Istook. Thank you very much, Doctor Gumnit.

                              ----------                              

                                         Wednesday, April 23, 1997.

                                WITNESS

JOHN S. GUSTAFSON, NATIONAL ASSOCIATION OF STATE ALCOHOL AND DRUG ABUSE 
    DIRECTORS

    Mr. Istook. I think we have a winner of today's patience 
award, and that is our final witness, John Gustafson, for the 
National Association of State Alcohol and Drug Abuse Directors. 
Thank you for being patient. This is your time.
    Mr. Gustafson. Thank you, Mr. Chairman. Good afternoon. My 
name is Jack Gustafson, and I am the executive director of the 
National Association of State Alcohol and Drug Abuse Directors, 
which represents the concerns of the State alcohol and drug 
abuse authorities in the 50 States and Territories.
    These authorities, Mr. Chairman, provide funding, technical 
assistance, and support to over 7,000 community-based programs 
that deliver substance abuse treatment to a large number of 
prevention programs that help youth, pregnant and parenting 
women, and people of all ages avoid substance abuse problems. 
Our members manage a very comprehensive treatment and 
prevention system that exceeds some $4 billion in annual 
expenditures. Of this $4 billion, the primary Federal 
contribution is the Substance Abuse block grant, which this 
year was at $1.36 billion.
    I am here today to ask that the Substance Abuse block grant 
be increased by approximately 10 percent, from $1.36 billion to 
$1.5 billion. We are also requesting a 10 percent increase for 
the Knowledge Development and Application grant programs of the 
Substance Abuse and Mental Health Services Administration. We 
recommend an increase from $156 million to $171.6 million for 
both the Center for Substance Abuse Treatment and the Center 
for Substance Abuse Prevention. State alcohol and drug agencies 
feel that these investments are essential to meet the need for 
prevention and treatment, and that they will reduce social 
costs related to crime, health care, foster care, and welfare.
    Mr. Chairman, there are three key points I want to make 
today regarding this request for an increase. First, we must 
maintain our efforts to stem the increasing use of alcohol and 
other drugs by youth. I think clearly this committee is well 
aware of the recent findings from the 1996 National Institute 
on Drug Abuse ``Monitoring the Future'' study which shows 
alarming increases in marijuana use among eighth and tenth 
graders. It is important to note that these increases are on 
top of the increased levels of alcohol and other drug abuse 
that received so much attention in the recent presidential 
campaign.
    The Substance Abuse block grant includes a 20 percent set 
aside for prevention services. These dollars leverage 
additional money from State and local resources, and it is 
critical to continue support for this program. In addition, the 
block grant helps provide treatment for thousands of 
adolescents. In fiscal year 1994, over 46,000 minors were 
admitted to alcohol and other drug abuse treatment programs 
supported by State authorities. Additional block grant dollars 
will enable us to expand treatment capacity for youth.
    Second, there is a very significant and increasing need for 
treatment and prevention services. Last year our members 
reported over 63,000 individuals requested treatment, it was 
not available and they were placed on waiting lists. This is 
just the tip of the iceberg. Many people are frustrated. It is 
well known that treatment capacity is not there and people do 
not bother to present for treatment.
    Moreover, welfare reform and changes in the SSI and SSDI 
program will make additional treatment capacity an even greater 
imperative. Estimates of the number of people receiving TANF, 
Treatment Assistance to Needy Families, who have alcohol and 
other drug abuse problems range from 15 to 25 percent, which 
equals approximately 600,000 to 1 million people. As these 
former welfare recipients move into a work environment, they 
are going to have to turn to a State treatment system that is 
already over capacity and has many people on the waiting list.
    The third point I would like to emphasize is that treatment 
and prevention programs work and are cost-effective. These 
services are cost-effective. They save taxpayer dollars in the 
long-run and in the short-run. Treatment and prevention are 
effective because they not only reduce overall drug use and 
alcohol abuse, they reduce broader social problems that affect 
all Americans.
    There are many studies that we can cite, and we have 
provided them to committee members and staff in the past. I 
would recommend one very recent study done by the Center for 
Substance Abuse Treatment entitled the ``National Treatment 
Improvement Evaluation Study'' which found that marijuana, 
cocaine, and crack use declined by half after one year of 
treatment. Dramatic decreases in arrest rates were also noted. 
States have also conducted a variety of treatment effectiveness 
studies and some of their results include: Florida prisons 
treatment system reduced recidivism among clients by 19 
percent; in your neighboring State, Mr. Chairman, Texas reduced 
arrest among its clients from almost 66 percent prior to 
treatment to only 30 percent one year after treatment. 
Prevention programs are equally effective. The commitment to 
prevention must be strengthened to ensure that programs that 
work are replicated.
    In summary, I want to request that the committee take into 
account the need for these additional treatment and prevention 
dollars which will be very well administered by a system of 
State and community providers. We are very interested in 
expanding additional accountability for our programs and 
working in partnership with the Federal Government as we move 
to expand our databases and our capacity to report on how these 
investments of public monies are being utilized.
    I greatly appreciate your attention, Mr. Chairman, and the 
opportunity to present to you this afternoon. Thank you.
    [Clerk's note.--Information required pursuant to clause 
2(g)(4) of Rule XI of the Rules of the House of Representatives 
was not received from this witness or from an entity reresented 
by this witness]
    [The prepared statement of John Gustafson follows:]

[Pages 1561 - 1566--The official Committee record contains additional material here.]


    Mr. Istook. Mr. Gustafson, I certainly appreciate your 
being here, your patience, your testimony, and your further 
information for the record. Thank you very much.
    The committee will stand adjourned until 10:00 tomorrow 
morning.







                 M E M B E R S   O F   C O N G R E S S

                               __________
                                                                   Page
Baldacci, Hon. J. E..............................................  2276
Becerra, Hon. Xavier.............................................  2302
Bereuter, Hon. Doug..............................................  2165
Bilbray, Hon. Brian..............................................  2167
Blumenauer, Hon. Earl............................................  2304
Bosley, Hon. D. E................................................  1480
Brown, Hon. Corrine..............................................  2151
Bunning, Hon. Jim................................................  2230
Burton, Hon. Dan.................................................  2122
Capps, Hon. Walter...............................................  2083
Christensen, Hon. Jon............................................  1971
Christian-Green, Hon. Donna......................................  1992
Clay, Hon. Bill..................................................  1992
Clayton, Hon. Eva................................................  1992
DeGette, Hon. Diana..............................................  2086
Dicks, Hon. Norman...............................................  1971
Dooley, Hon. Cal.................................................  2266
Edwards, Hon. Chet...............................................  1971
Fattah, Hon. Chaka...............................................  2273
Foley, Hon. Mark.................................................  2172
Fox, Hon. J. D...............................................2271, 2280
Furse, Hon. Elizabeth............................................  2071
Goodling, Hon. W. F..............................................  2185
Hamilton, Hon. L. H..............................................  2313
Hansen, Hon. J. V................................................  2295
Hayworth, Hon. J. D..............................................  1971
Hilliard, Hon. E. F..............................................  2301
Hinojosa, Hon. Ruben.............................................  2100
Jackson-Lee, Hon. Sheila.....................................2026, 2285
Johnson, Hon. E. B...............................................  1992
Johnson, Hon. Nancy..............................................  2026
Kelly, Hon. Sue..................................................  2246
Latham, Hon. Tom.................................................  2283
Lazio, Hon. Rick.................................................  2268
Lehman, Hon. William...........................................791, 801
Maloney, Hon. Carolyn............................................  2026
McCain, Hon. John................................................  1353
McCarthy, Hon. Carolyn...........................................  2026
McKeon, Hon. Buck................................................  2298
Meek, Hon. C. P..............................................2151, 2177
Mica, Hon. John..................................................  2151
Millender-McDonald, Hon. Juanita.................................  1992
Moran, Hon. J. P.................................................  2091
Morella, Hon. Connie.............................................  2026
Neal, Hon. Richard...............................................  2317
Nethercutt, Hon. G. R., Jr.......................................  2145
Norton, Hon. E. H................................................  2026
Nussle, Hon. Jim.................................................  2239
Oberstar, Hon. James.............................................  2250
Olver, Hon. J. W.................................................  2281
Pallone, Hon. Frank, Jr......................................2105, 2274
Pomeroy, Hon. Earl...............................................  2314
Porter, Hon. J. E................................................  2358
Poshard, Hon. Glenn..............................................  2239
Riggs, Hon. Frank................................................  2206
Roemer, Hon. Tim.................................................  2127
Rothman, Hon. Steven.............................................  2216
Sanders, Hon. Bernard............................................  2278
Scott, Hon. R. C. ``Bobby''......................................  2262
Shays, Hon. Christopher..........................................  2308
Slaughter, Hon. L. M.........................................2026, 2111
Stearns, Hon. Cliff..............................................  2117
Tauscher, Hon. Ellen.............................................  2026
Visclosky, Hon. Peter............................................  2079
Waters, Hon. Maxine..........................................1992, 2200
Weygand, Hon. Bob................................................  2137
Whitfield, Hon. Ed...............................................  2159
Wynn, Hon. Albert................................................  1992
Young, Hon. Don..................................................  2127






                           W I T N E S S E S

                               __________
                                                                   Page
Alden, Michael...................................................  2904
Alexander, Richard...............................................  1771
Ali, Lonnie......................................................  1365
Ali, Muhammad....................................................  1365
Allen, W. R......................................................  2653
Alonso-Mendoza, Emilio...........................................  1371
Ammann, A. J.....................................................   983
Ammerman, H. K...................................................  2818
Anderson, A. W...................................................   838
Anderson, Denise.................................................   860
Anderson, Harry..................................................  1337
Anderson, John...................................................   860
Aquilino, J. D., Jr..............................................  1346
Aquilino, J. Z...................................................  1346
Arnold, W. E.....................................................     9
Aronson, Emme....................................................   258
Atkinson, W. B...................................................  2821
Avery, Martin....................................................  1706
Baker, S. P......................................................   249
Balster, Robert..................................................   298
Barker, F. M.....................................................  1015
Barnett, Alice...................................................   585
Bassett, Brenda..................................................   801
Batshaw, M. L....................................................  2468
Beattie, D. S....................................................   191
Bellermann, P. R. W..............................................  1586
Belletto, Peter..................................................  2609
Berns, K. I......................................................     1
Block, Alvin.....................................................  2344
Bosch, Erin......................................................  1505
Botset, Tracy....................................................   258
Boyan, B. D......................................................   872
Boyd, Merle......................................................  2757
Brannon, Patsy...................................................   155
Breedlove, Roy...................................................    20
Breedlove, Taylor................................................    20
Breslow, Jan.....................................................   117
Brody, W. R......................................................  2491
Bronson, Dr. Oswald, Sr..........................................  2151
Brown, L. P..................................................2340, 2533
Brown, Lynda.....................................................  1750
Brownstein, A. P.................................................   130
Bruton-Maree, Nancy..............................................   482
Bufe, N. C.......................................................  1714
Bye, Dr. R. E., Jr...............................................  2440
Calkins, C. L....................................................    69
Campbell, Christopher............................................   227
Carpenter, Jeanne................................................   762
Cazzetta, Ralph..................................................  1215
Cerqueira, Manuel................................................   945
Chadwick, Lynn...................................................  2605
Chaisson, Dr. Richard............................................  2894
Charytan, Chaim..................................................  1848
Ciccariello, Priscilla...........................................   105
Cioffi, Gina.....................................................  1213
Coben, J. H......................................................   695
Cohen, B. M......................................................  1935
Cole, Anthony....................................................  1327
Collins, Michael.................................................  2871
Conn, P. M.......................................................  1839
Coulter, H. L....................................................   578
Cox, C. M........................................................  2667
Crabbs, B. L.....................................................   687
Cryer, P. E......................................................  1639
Cunningham, M. P.................................................  1048
Davis, Rev. W. F.................................................  1723
Day, A. L........................................................  2889
Debakey, Michael.................................................    45
Demaret, C. A....................................................  1860
Dew, D. W........................................................  2481
Dickey, Lori.....................................................   860
Dinsmore, Alan...................................................  2840
Dixon, J. E......................................................   345
Downey, Morgan...................................................  1371
Drake, L. A......................................................   429
Drugay, Marge....................................................   896
Dubois, Helen....................................................  2379
Duggan, E. S.....................................................  2860
Durant, John.....................................................  1285
Dwyer, Kevin.....................................................  2884
Ehrlich, Michael.................................................    20
Ein, Dan.........................................................   780
Emmens, Matt.....................................................  2515
Erickson, A. G...................................................  1496
Feder, Miriam....................................................  2477
Fell, Linda......................................................   165
Fernandez, H. A..................................................   405
Fernandez, S. P..................................................   591
Finkelstein, L. H................................................  2484
Firpo, Adolfo....................................................  1945
Flynn, L. M......................................................  1621
Fonseca, Raymond.................................................  2522
Foreman, Spencer.................................................  2453
Fox, V. G........................................................   370
Friedman, Harvey.................................................  1177
Futrell, N. N....................................................   441
Gaebe, M. J. W...................................................   801
Galassi, Dale....................................................  1523
Gedance, Suzanne.................................................  1274
Geisel, R. L.....................................................  2563
Gibson, D. M.....................................................  1154
Gipp, David......................................................  2645
Gorham, Millicent................................................  1435
Gorosh, Kathye...................................................  2721
Greenberg, Warren................................................  1427
Guard, Roger.....................................................  1486
Guerrant, Richard................................................   203
Gumnit, R. J.....................................................  1549
Gustafson, J. S..................................................  1559
Hagen, R. J......................................................   639
Hains, Ann.......................................................  2887
Hanle, Paul......................................................  1075
Hannemann, R. E..................................................   461
Harper, Francis..................................................   309
Harr, P. B.......................................................   726
Harris, S. B.....................................................  2597
Hayes, Edward....................................................    79
Helderman, Harold................................................   179
Henderson, C. C..................................................  2406
Hendricks, Karen.................................................   287
Herrera, Stanley.................................................  2320
Hirsch, Jules....................................................  1783
Hoffheimer, Larry................................................  1371
Hryhorczuk, Daniel...............................................  2772
Hubbard, J. B....................................................  2675
Hughes, L. T.....................................................  1111
Hull, A. R.......................................................  1605
Hunter, Kathy....................................................  2334
Hunter, T. H.....................................................   203
Ikenberry, S. O..................................................  1199
Jackson, Beryl...................................................  1305
Jaffe, David.....................................................  1761
Janger, S. A.....................................................  2670
Javits, J. M.....................................................  2680
Jensen, Allan....................................................   815
Jesien, George...................................................  2887
Johnson, Carolyn.................................................   907
Johnson, David...................................................  2568
Johnson, E. B....................................................  2026
Johnson, Jennifer................................................  2766
Jollivette, C. M.................................................  2549
Jones, L. A......................................................  2347
Joyce, Michael...................................................   227
Kaeser, Lisa.....................................................  1294
Kapperman, Gaylen................................................  1224
Kenmitz, J. W....................................................  1316
Kenney, Kimberly.................................................   976
Kimmelman, Paul..................................................   849
Kissick, W. L....................................................   828
Klugman, Kate....................................................  1505
Kownacki, Sandra.................................................  1039
Kraut, A. G......................................................  1026
Krepcho, Dave....................................................   791
Lampkins, Thornton...............................................  1605
LaPolla, Sheila..................................................  1875
Larson, Dan......................................................  1665
LaRusso, Nick....................................................   130
Lavery, Jack.....................................................   995
Lazarus, G. S....................................................  1888
Levine, Felice...................................................   509
Levinson, Wendy..................................................  1896
Levitan, M. S....................................................   334
Lewis, D. E......................................................  2445
Lewis, Daniel....................................................  1090
Lewis, Rosalie...................................................  1090
Lichtman, M. A...................................................   653
Ligosky, J. R....................................................   108
Lindberg, Donald.................................................    45
Lindley, B. D....................................................   394
Lokhandwala, Mustafa.............................................  1065
Lokovic, J. E....................................................  2739
Lowe, W. L.......................................................    94
Lubinski, Christine..............................................   770
Luke, R. G.......................................................  1814
Maloney, Justine.................................................  2884
Marchand, Paul...................................................  2884
Marcus, Ann......................................................  2536
Marockie, H. R...................................................   567
Mason, Russell ``Bud''...........................................  2645
Mauderly, J. L...................................................  2558
Maul, K. I.......................................................   216
McEwen, B. S.....................................................  2691
McKnight, David..................................................   130
McLeod, Renee....................................................  2501
McMillan, Elise..................................................  1797
McMillan, Will...................................................  1797
McNulty, Joseph..................................................  1337
McSteen, Martha..................................................  2584
Mesulam, M. M....................................................  2901
Mitchem, Arnold..................................................   600
Modell, Vicky....................................................  1750
Molloy, Russ.....................................................  2528
Moody, J. K......................................................  2417
Morgan, D. H.....................................................   354
Morgan, R. C., Jr................................................  1189
Morgan, R. V.....................................................  1576
Mortensen, Colleen...............................................   165
Mullin, Leah.....................................................   704
Munro, Nancy.....................................................   493
Murstein, Denis..................................................  2507
Musser, Erika....................................................  1224
Myers, Terry-Jo..................................................  2473
Neas, K. B.......................................................  2884
Norton, Nancy....................................................  2370
Norton, Ruth.....................................................   105
O'Reilly, R. J...................................................    30
Olsson, C. A.....................................................  1121
Orelove, Fred....................................................  2324
Orr, Alberta.....................................................  2840
Owens, A. H., Jr.................................................  1459
Parker-Jimenez, Joy..............................................   317
Peck, S. B.......................................................   967
Perez, Daniel....................................................  1371
Perkins, Joseph..................................................   933
Phillips, F. B...................................................  1534
Pings, C. J......................................................  2716
Prothrow-Stith, Deborah..........................................  2879
Purves, Karen....................................................  1143
Quaranta, M. A...................................................   665
Quigley, C. N....................................................   552
Raezer, J. W.....................................................  1655
Rasure, Dana.....................................................    20
Rauscher, Frances................................................  1264
Reed, D. J.......................................................  1167
Reich, Gloria....................................................  1450
Reigart, J. R....................................................   532
Reynolds, Mildred................................................  1631
Rice, Donna......................................................   334
Rich, R. R.......................................................   919
Richter, M. K....................................................  2762
Rider, J. A......................................................   227
Riley, E. P......................................................   383
Robb, L. J.......................................................  1829
Robinowitz, Carolyn..............................................   417
Robinson, H. A...................................................   542
Rodney, Laxley...................................................  2835
Roos, David......................................................   704
Roper, W. L......................................................  2387
Rosenthal, Suzanne...............................................  2370
Rothman, Arthur..................................................  2216
Ruben, R. J......................................................   736
Sabolich, John...................................................   239
Sabshin, Melvin..................................................   504
Salazar, Javier..................................................   770
Samuelson, J. I..................................................  1738
Sanchez, Efrain..................................................  1569
Sandoval, S. O...................................................  2830
Saylor, A. V.....................................................  2458
Schoenwolf, G. C.................................................   714
Schuyler, William................................................  1867
Schwartz, P. E...................................................  1907
Schweikert, M. L.................................................  1686
Scrimshaw, Susan.................................................   750
Seatter, D. E....................................................   678
Sellers, Julie...................................................  1099
Sever, J. L......................................................  1957
Shalita, A. R....................................................  2807
Shapiro, Jan.....................................................  1516
Shaver, Joan.....................................................   472
Shortbull, Tom...................................................  1004
Silver, H. J.....................................................  2865
Simpson, B. C....................................................  1595
Smith, Barbara...................................................  2887
Snape, D. W......................................................  2525
Solomon, Liza....................................................   354
Sparling, P. F...................................................  1415
Stecher, Mary....................................................   630
Stephens, Martin.................................................  1403
Sterling, Richard................................................  1695
Stevens, Christine...............................................  2824
Stewart, Daisy...................................................  1132
Stossel, T. P....................................................   884
Stubbs, P. E.....................................................   956
Sturdivant, J. N.................................................  2410
Suttie, John.....................................................  1251
Tafel, Richard...................................................  1471
Tarantino, Rich..................................................   801
Taylor, S. D.....................................................   317
Terry, Sharon....................................................  2488
Thompson, Travis.................................................  1797
Thorson, Kristin.................................................  2706
Towers, Jan......................................................   451
Tuckson, R. V....................................................   268
Turino, Gerard...................................................   143
Valenzuela, Carmen...............................................   521
Van Zelst, T. W..................................................  2695
Vidis, Megan.....................................................  1450
Walgren, Kathleen................................................  2374
Waters, Patrick..................................................  1512
Weber, Dan.......................................................  1814
Weber, Phyllis...................................................   277
Weinberg, A. D...................................................  2347
Weiner, R. H.....................................................  2815
Weinstein, Michael...............................................  2577
Welch, S. H......................................................  1305
White, David.....................................................  2394
Williams, Elaine.................................................  1240
Wilson, Robert...................................................  2518
Wine, Blanche....................................................  1678
Wittenberg, H. R.................................................  2711
Wood, D. L.......................................................    58
Yager, D. V......................................................   613
Zingale, Daniel..................................................   770
Zudden, W. E.....................................................  1923








                 O R G A N I Z A T I O N A L  I N D E X

                              ----------                              
                                                                   Page
Ad Hoc Group for Medical Research Funding........................     1
AIDS Action Council..............................................   770
AIDS Drug Assistance Program.....................................     9
AIDS Healthcare Foundation.......................................  2577
Air Force Sergeants Association..................................  2739
Alliance for Eye and Vision Research.............................  1274
Alzheimer's Association..........................................  2901
American Academy of Child and Adolescent Psychiatry..............   417
American Academy of Dermatology..................................   429
American Academy of Family Physicians............................   726
American Academy of Neurology....................................   441
American Academy of Nurse Practitioners..........................   451
American Academy of Opthalmology.................................   815
American Academy of Orthopaedic Surgeons.........................    20
American Academy of Otolaryngology--Head and Neck Surgery........   736
American Academy of Pediatrics...................................   461
American Academy of Physicians Assistants........................  2620
American Association for Cancer Research.........................    30
American Association for Dental Research.........................   872
American Association of American Universities....................  2716
American Association of Anatomists...............................   714
American Association of Blood Banks..............................  2781
American Association of Colleges of Nursing......................   472
American Association of Colleges of Osteopathic Medicine.........    58
American Association of Critical-Care Nurses.....................   493
American Association of Dental Schools...........................   838
American Association of Immunologists............................   919
American Association of Neurological Surgeons....................  2889
American Association of Nurse Anesthetists.......................   482
American Association of Retired Persons..........................   933
American Association of School Administrators....................   849
American Association of University Affiliated Programs...........  2468
American Autoimmune Related Disease Association..................  2761
American Cancer Society..........................................  1048
American Chemical Society........................................    79
American College of Cardiology...................................   945
American College of Rheumatology.................................  2353
American College of Preventive Medicine..........................  2464
American Council on Education....................................  1199
American Dental Association......................................   956
American Dental Hygienists' Association..........................   967
American Diabetes Association....................................  1639
American Federation for Medical Research.........................    94
American Federation of Government Employees......................  2410
American Foundation for AIDS Research............................   983
American Foundation for the Blind................................  2844
American Gas Association.........................................  2785
American Heart Association.......................................   117
American Indian Higher Education Consortium......................  1004
American Legion..................................................  2675
American Library Association.....................................  2406
American Lung Association........................................   143
American Nurses Association......................................  1240
American Optometric Association..................................  1015
American Psychiatric Association.................................   504
American Psychological Association...............................  2751
American Psychological Society...................................  1026
American Public Power Association................................  2853
American Public Television Stations..............................   370
American Rehabilitation Association..............................  2777
American Sleep Apnea Association.................................  2525
American Sleep Disorders Association.............................  2394
American Social Health Association...............................  2811
American Society for Clinical Nutrition..........................  1783
American Society for Microbiology................................  2432
American Society for Nutritional Sciences........................   155
American Society for Parenteral and Enteral Nutrition............  1783
American Society for Pharmacology and Experimental Therapeutics..  1065
American Society of Clinical Pathologists........................   165
American Society of Hematology...................................   884
American Society of Nephrology...................................  1814
American Society of Transplant Physicians........................   179
American Society of Tropical Medicine and Hygiene................   203
American Sociological Association................................   509
American Therapeutic Recreation Association......................  1111
American Tinnitus Association....................................  1450
American Trauma Society..........................................   216
American Urological Association..................................  1121
American Vocational Association..................................  1132
Amyotrophic Lateral Sclerosis Association........................  2680
Animal Protection Institute......................................  1143
Arthritis Foundation.............................................   687
Association for Health Research..................................  2387
Association for Professionals in Infection Control and 
  Epidemiology...................................................  1099
Association of American Medical Colleges.........................   191
Association of Minority Health Professions Schools...............   268
Association of Organ Procurement Organization....................   277
Association of Outplacement Consulting Firms International.......  2746
Association of Professors of Dermatology.........................  2807
Association of Schools of Allied Health Professions..............  1154
Association of Schools of Public Health..........................   750
Association of University Environmental Health Sciences Centers..  1167
Association of University Programs in Health Administration......   405
Association of University Programs in Occupational Health and 
  Safety.........................................................  2772
Astra Merck......................................................  2515
Autism Society of America........................................  1039
Autism...........................................................  2588
Blue Cross and Blue Shield Association...........................  1177
Braille Training.................................................  1224
Center for Civic Education.......................................   552
Center for Victims of Torture....................................   521
Center Point.....................................................   317
Children's Brain Diseases Foundation.............................   227
Children's Environmental Health Network..........................   532
Chronic Fatigue and Immune Dysfunction Syndrome Association......   976
Cities Advocating Emergency AIDS relief..........................   542
City of Newark...................................................   585
Close Up Foundation..............................................  2670
Coalition for Health Funding.....................................   287
Coalition for Heritable Disorders of Connective Tissue...........   105
Coalition of EPSCOR States.......................................   394
Coalition of Northeastern Governors..............................  2804
College of Physicians of Philadelphia............................   828
College on Problems of Drug Dependence...........................   298
Consortium for Citizens With Disabilities........................  2884
Consortium for Research and Practicum on Minority Males..........  2835
Consortium of Social Science Associations........................  2865
Consortium on School Networking..................................  2849
Cooley's Anemia Foundation.......................................  1213
Core Center......................................................  2721
Corporation for Public Broadcasting..............................  2633
Council of Chief States School Officers..........................   567
Council of State Administrators of Vocational Rehabilitation.....  1595
Council of State Governments.....................................  1480
Cystic Fibrosis Foundation.......................................  2494
Dana Alliance for Brain Initiatives..............................   309
Digestive Disease National Coalition.............................  2370
Division for Early Childhood.....................................  2887
Dystonia Medical Research Foundation.............................  1090
Dystrophic Epidermolysis Bullosa Research Association of America.  2477
Empirical Therapies..............................................   578
Endocrine Society................................................  1839
Epilepsy Foundation of America...................................   762
ESA, Incorporated................................................  2344
Family Planning Coalition........................................  2701
FDA Council......................................................  1867
Federation of American Societies for Experimental Biology........  1251
Federation of Behavioral, Psychological and Cognitive Sciences...  2563
FHS Society......................................................  1390
Fibromyalgia Network.............................................  2706
Fleet Reserve Association........................................    69
Florida State University.....................................2440, 2549
Foundation for Ichthyosis and Related Skin Types (First).........   334
Fred Hutchinson Cancer Research Center...........................  2510
Friends of Cancer Research.......................................  1285
Friends of National Institute of Child Health and Human Dev. 
  Institute......................................................  1294
Friends of the National Library of Medicine......................    45
Genome Action Coalition..........................................  1621
Harvard School of Public Health..................................  2879
Haymarket House..................................................  1327
Health Professions and Nursing Education Coalition...............   591
Helen Keller National Center for Deaf-Blind......................  1337
Hispanic Association of Colleges and Universities................  1576
Humane Society of the United States..............................  1403
Illinois Collaboration on Youth..................................  2507
Immune Deficiency Foundation.....................................  1860
In Defense of Animals............................................  2855
Infectious Diseases Society of America...........................  1415
Injury Prevention Research Center................................   695
Intercultural Cancer Council.....................................  2347
International Center for Public Health...........................  2540
International Society for Technology in Education................  2849
International Union Against Tuberculosis and Lung Disease........  2894
Interstate Conference of Employment Security Agencies............  2734
Interstitial Cystitis Association................................  2473
Jaffee Family Foundation.........................................  1761
Jeffrey Modell Foundation........................................  1750
John Hopkins School of Hygiene and Public Health.................   249
John Hopkins Unversity...........................................  2491
Johnson and Wales Unversity......................................   801
Joint Concil of Allergy, Asthma and Immunology...................   780
Joint Steering Committee for Public Policy.......................   345
Juvenile Diabetes Foundation.....................................   704
Karuk Tribe of California........................................  2690
Labor Policy Association.........................................   613
Legal Action Center..............................................   639
LeGrange Children's Mental Health Association....................   630
Leukemia Society of America......................................   653
Log Cabin Republicans............................................  1471
Lovelace Respiratory Research Institute..........................  2558
Lupus Foundation of America......................................   995
McLean Hospital..................................................  1935
Medical Library Association......................................  1486
Mended Hearts....................................................  1427
Metropolitan Family Services.....................................  1496
Minann, Incorporated.............................................  2695
Montefiore Medical Center........................................  2453
Montgomery County Stroke Club....................................  1512
Mystic Seaport...................................................  2667
National Aging and Visoin Network................................  2840
National Alliance of State and Territorial AIDS Directors........   354
National Alliance for the Mentally Ill...........................  2458
National Alopecia Areata Foundation..............................  1516
National Assembly on School-Based Health Care....................  2417
National Association for State Community Services Programs.......  2795
National Association of Anorexia Nervosa and Associated Disorders   258
National Association of Community Health Centers.................  1523
National Association of County and City Health Officials.........  1534
National Association of Epilepsy Centers.........................  1549
National Association of Music Merchants..........................  1264
National Association of Pediatric Nurse Associates and 
  Practitioners..................................................  2501
National Association of Social Workers...........................   665
National Association of State Alcohol and Drug Abuse Directors...  1559
National Black Nurses Association................................  1435
National Center for Tobacco-Free Kids............................  2662
National Coalition for Cancer Research...........................  1459
National Coalition for Heart and Stroke Research.................  1505
National Coalition for Osteoporosis and Related Bone Diseases....  2448
National Coalition for Promoting Physical Activity...............  2766
National Coalition for Research..................................  1380
National Coalition of State and Alcohol Drug Treatment and 
  Prevention Association.........................................   639
National Coalition of Survivors for Violence Prevention..........  2882
National Coalition on Deaf-Blindness.............................  2871
National Collegiate Athletic Association.........................  2904
National Committee to Preserve Social Security...................  2584
National Congress of American Indians............................  2653
National Council of Educational Opportunity Associations.........   600
National Council of Social Security Management Association.......   678
National Council on Rehabilitation Education.....................  2481
National Depressive and Manic-depressive Association.............  1631
National Energy Assistance Directors' Association................  2800
National Federation of Community Broadcasters....................  2605
National Foundation for Ectodermal Dysplasias....................  2762
National Foundation of Brain Research............................  1371
National Fuel Funds Network......................................  2374
National Hemophilia Foundation...................................  2382
National Hep-Camp Association....................................  1569
National Indian Education Association............................  2358
National Indian Impacted Schools Association.....................  2609
National Institute for Automotive Service Excellence.............  2815
National Job Corps Coalition.....................................  2742
National Kidney Foundation.......................................  1605
National Marrow Donor Program....................................  2830
National Medical Association.....................................  1189
National Military Family Association.............................  1655
National Minority Public Broadcasting Consortia..................  2625
National Multiple Sclerosis Society..............................  2597
National Neurofibromatosis Foundation............................  1586
National Parkinson's Foundation........................1353, 1365, 1371
National Psoriasis Foundation....................................  1678
National Public Radio............................................  2445
National Senior Service Corps Directors Associations.............  1686
National Writing Project.........................................  1695
Navajo Nation....................................................  1706
New York University--School of Education.........................  2536
New York University Medical Center...............................  2791
Northwestern University Traffic Institute........................  1714
Nova Care Sabolich...............................................   239
NYU--Center for Cognition, Learning, Emotion and Memory..........  2533
Organizations of Academic Family Medicine........................  2711
Parkinson's Action Network.......................................  1738
Philadelphia Academy of Natural Sciences.........................  1075
Philadelphia College of Osteopathic Medicine.....................  2484
Polycystic Kidney Research Foundation............................  1665
Prostatitis Foundation...........................................  1771
Public Broadcasting Services.................................2860, 1305
PXE International................................................  2488
Reading is Fundamental...........................................  1829
Recording for the Blind and Dyslexic.............................  2563
Renal Physicians Association.....................................  1848
Research Society on Alcoholism...................................   383
Rotary International.............................................  1957
Sac and Fox Nation...............................................  2757
Science and Technology Advisory Committee........................  2821
Society for Animal Protective Legislation....................2650, 2824
Society of General Internal Medicine.............................  1896
Society of Gynecologic Oncologists...............................  1907
Society of Neuroscience..........................................  2691
Society of Toxicology............................................  2498
South Florida Bread Food Bank....................................   791
Sudden Infant Death Syndrome Alliance............................   860
Tri-Council for Nursing..........................................   896
United Distribution Companies....................................  1923
United Ostomy Association........................................  2379
United States Catholic Conference................................  1723
United Tribes Technical College..................................  2545
University of Medicine and Dentistry of New Jersey...............  2528
University of Miami..........................................2549, 2573
University of Pennsylvania School of Dental Medicine.............  2522
University of Puerto Rico........................................  1945
Vanderbilt University............................................  1797
Voice for Adoption...............................................   907
Wilson Foundation................................................  2518
Wisconsin Regional Primate Research Center.......................  1316