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



 
                 DEPARTMENTS OF LABOR, HEALTH AND HUMAN
               SERVICES, EDUCATION, AND RELATED AGENCIES
                        APPROPRIATIONS FOR 1999

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

                                HEARINGS

                                BEFORE A

                           SUBCOMMITTEE OF THE

                       COMMITTEE ON APPROPRIATIONS

                         HOUSE OF REPRESENTATIVES

                       ONE HUNDRED FIFTH CONGRESS

                             SECOND 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, Carol Murphy, Michael K. Myers,
                and Francine Salvador, Subcommittee Staff
                                ________

                                 PART 7B
                            (Pages 1-1371)

               TESTIMONY OF MEMBERS OF CONGRESS AND OTHER

                INTERESTED INDIVIDUALS AND ORGANIZATIONS

                              

                                ________

         Printed for the use of the Committee on Appropriations
                                ________

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48-709 O                    WASHINGTON : 1998
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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        ESTEBAN EDWARD TORRES, California   
HENRY BONILLA, Texas                   NITA M. LOWEY, New York             
JOE KNOLLENBERG, Michigan              JOSE E. SERRANO, New York           
DAN MILLER, Florida                    ROSA L. DeLAURO, Connecticut        
JAY DICKEY, Arkansas                   JAMES P. MORAN, Virginia            
JACK KINGSTON, Georgia                 JOHN W. OLVER, Massachusetts        
MIKE PARKER, Mississippi               ED PASTOR, Arizona                  
RODNEY P. FRELINGHUYSEN, New Jersey    CARRIE P. MEEK, Florida             
ROGER F. WICKER, Mississippi           DAVID E. PRICE, North Carolina      
MICHAEL P. FORBES, New York            CHET EDWARDS, Texas                 
GEORGE R. NETHERCUTT, Jr., Washington  ROBERT E. (BUD) CRAMER, Jr., Alabama
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 1999

                              ----------                              

                                       Wednesday, January 28, 1998.

 TESTIMONY OF MEMBERS OF CONGRESS AND OTHER INTERESTED INDIVIDUALS AND 
                             ORGANIZATIONS

                                WITNESS

JEROME PAULSON, M.D., AMERICAN ACADEMY OF PEDIATRICS
    Mr. Porter. This hearing begins the subcommittee's work on 
fiscal year 1999 funding for the departments and agencies 
within our jurisdiction.
    Today we begin by hearing from public witnesses. We will 
then proceed to each of the departments and agencies, and then 
finally to Members of Congress. We will also receive testimony 
from the General Accounting Office. We have 29 days of hearings 
scheduled, covering just over 3 months, and we expect to have 
our final hearing right at the end of April.
    Congress, as all of you know, is a busy place, and Members 
have many conflicting hearings, meetings, and other official 
responsibilities. However, let me assure you that while Members 
may not be present, your testimony is reviewed by them and 
their staffs and your views provide valuable information as we 
review the President's budget requests.
    In order to accommodate as many members of the public as 
possible, we have scheduled over 20 witnesses for each session 
and are still not able to hear from all who wanted to testify. 
Overall, we will hear from over 200 witnesses in this segment 
alone. As a result, I have to enforce the rule limiting 
testimony to 5 minutes very strictly. My staff has acquired a 
new countdown device that they are going to use, and I would 
ask that, as you testify, you keep this limitation in mind in 
consideration of other witnesses that must follow you.
    I would also remind witnesses of two provisions of 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 
this subcommittee staff.
    We begin with Jerome Paulson, M.D., Associate Professor, 
Division of Pediatrics, Department of Health Care Sciences, 
George Washington University School of Medicine and Health 
Sciences, representing the American Academy of Pediatrics.
    Dr. Paulson, we welcome you this morning.
    Dr. Paulson. Good morning, Mr. Porter. I am Jerome Paulson, 
M.D., a member of the American Academy of Pediatrics. I am a 
practicing pediatrician and an associate professor at George 
Washington University. On behalf of the Academy and our 
pediatric colleagues, I would like to thank the subcommittee 
for the opportunity to present this statement, and I want to 
thank you for putting children first on your agenda this 
morning.
    This year, as we celebrate the bicentennial of the U.S. 
Public Health Service, we applaud how much has been 
accomplished. We have conquered many diseases and disabling 
conditions, especially for children; for example, smallpox, and 
we are close to the eradication of polio.
    To continue meeting the challenges ahead of new and 
emerging infectious diseases, food safety concerns, and costly 
chronic diseases, we must continue to invest in a continuum of 
public health activities that includes the full spectrum of 
biomedical, behavioral, and health services research, invests 
in disease prevention and health promotion, targets health care 
services for vulnerable populations, and educates a primary 
care and public health work force.
    As pediatricians, we are on the front line and we see 
firsthand the impact of poverty and violence on the health of 
our children and adolescents, and we know that the future of 
our work force depends on the decisions we make today.
    I will focus my oral remarks on a few observations from my 
own practice and research. The pediatric community has strived 
for decades to curb children and adolescents' access to and use 
of tobacco. Each day 3,000 children nationally begin to use 
tobacco. Of those people who will ever smoke, 90 percent begin 
before age 19. Young smokers suffer from respiratory problems 
and asthma, and among teens who are regular smokers, 1 in 3 
will die from smoking.
    As pediatricians, we counsel our patients about the 
addictiveness of nicotine and its detrimental health effects. 
In addition, we discuss with parents the impact of secondhand 
smoke on their children. These facts alone confirm that tobacco 
is truly a pediatric disease. As pediatricians, we strongly 
recommend adequate support for a wide array of tobacco 
prevention and cessation programs, including the CDC's office 
on smoking and health. These programs have a proven record of 
success in reducing smoking rates.
    Let us not forget the environmental effects of tobacco 
smoke. Asthma is the most common chronic disease of childhood 
and is frequently exacerbated by tobacco. It is a disease that 
is on the increase, and disproportionately affects African-
American and Latino children.
    According to the CDC, asthma-related costs to the health 
care system are continuing to grow because of increased 
morbidity and mortality. The current CDC projections for the 
year 2000 are $12.4 billion. Added to these health care costs 
are days lost from school for children and days away from work 
for their parents. However, with increased public health 
education, cost-effective environmental interventions and 
research, such as the NIH-, NIEHS- and NIAI-sponsored inner-
city asthma study, asthma-related illnesses and costs can be 
dramatically reduced.
    Injury is the leading cause of death and disability among 
children and young adults 1 to 44 years of age. Every day 60 
children die from injuries and countless others are injured and 
disabled. Injury is costly on multiple levels: in theemotional 
toll it takes on victims and their families; in direct medical 
expenses, both acute and chronic; and in long-term economic costs due 
to the years of potential life and productivity lost, especially with 
respect to children.
    In direct medical costs alone, injury costs the Federal 
Government $12.6 billion annually, and an additional $18.4 
billion each year in disability and death benefits. Therefore, 
measures to prevent injury and reduce its severity are 
extremely cost-effective. The National Center for Injury 
Prevention and Control fulfills a unique function in this 
undertaking.
    The Center's work addresses many types of injuries, both 
intentional, such as youth-perpetrated violence, and 
unintentional. Additional resources would enable the Center to 
continue its important leadership in the Safe America Program 
through which the NCIPC has brought together diverse public and 
private sector entities to develop and disseminate injury-
prevention information and interventions.
    The initial focus of the effort is to reduce injury among 
children and adolescents. Additional resources would also 
enable the center to expand efforts to reduce physical and 
sexual violence among children, produce a comprehensive youth 
violence prevention program, and ensure that every U.S. 
resident has access to the lifesaving and cost-effective 
services of a poison control center through national and State-
specific toll-free numbers.
    As scientists and investigators, pediatricians encourage 
research decisions to continue to remain in the hands of 
scientists at the CDC. But what happens to children or 
adolescents when he or she is injured and requires emergency 
services? As a participant in a project funded by the EMSC 
program, I know how important those dollars are in enabling us 
to develop the information that will improve the system of care 
for children and save lives.
    Thank you for this opportunity to provide you with our 
recommendations for the coming fiscal year. We hope that we can 
continue our dialogue with this committee following the release 
of the President's fiscal year 1999 budget. There are many 
important opportunities for pediatric behavioral and health 
sciences research. We know that you will not forget America's 
children.
    Mr. Porter. Thank you. Thank you for your fine statement, 
and thank you for being reasonably close to your time limit.
    Mr. Paulson. You are welcome, sir.
    [The prepared statement of Jerome Paulson, M.D., follows:]


[Pages 4 - 15--The official Committee record contains additional material here.]



                                       Wednesday, January 28, 1998.

                                WITNESS

MIKE MILLER, M.D., FDA-NIH COUNCIL

    Mr. Porter. Mike Miller, M.D., Director of Federal 
Relations, Incorporated, testifying on behalf of the FDA 
Research Council.
    Dr. Miller. Thank you, Mr. Chairman.
    On behalf of the FDA Research Council, I want to thank you 
for the opportunity to submit testimony concerning the 
importance of a sustainable, predictable funding base for the 
NIH. Our comments in full will be included for the record.
    We emphasize the importance of the NIH in improving the 
quality of health care for all. In past years this committee 
has been vitally important in addressing the funding needs of 
the NIH and the Council, and the entire research community is 
grateful for your support.
    Based on the Council's assessment of challenges and 
opportunities the FDA is presented within the next several 
years, the Council supports doubling the NIH budget for the 
next 5 years, starting with a 15 percent increase for fiscal 
year 1999.
    Why does the Council and NIAMS support such an increase for 
the NIH's budget? The answer to this lies, I believe, in 
understanding the goal of the entire process. It may seem 
obvious, but the goal of the entire biomedical research 
innovation and discovery process is to improve the quality of 
people's lives. In our detailed budgetary discussions that we 
had in Washington it is easy to forget that basic fact, but it 
is also sometimes not easy to see that the ultimate goal is a 
simple cure for a disease.
    What everybody really wants is to be able to go to the 
physician, take a pill, and be cured for whatever ails them. 
Getting to that goal is not easy or simple. It takes a robust 
biomedical research system. Worldwide the U.S. is the leader in 
such a system, and the NIH is at its foundation.
    What I would like to briefly discuss is the historical 
context of our current biomedical research system, because by 
understanding how we came to our current level of knowledge and 
the treatments from that knowledge, we can better appreciate 
the landscape ahead and better plan how we want to proceed in 
the future.
    Most people who support the NIH understand intuitively what 
potentially lies ahead, but by understanding what seems 
intuitive, it can help to clarify its importance and relevance 
to our lives, our actions, and our future.
    What has been the progress of medicine for the past 20, 50, 
or 100 years? For example, 100 years ago, biomedical research 
was largely a process of observation and classification. 
Medical practice was largely based upon simple chemicals and 
even herbal extracts which have been found by trial and error 
over many years to have some beneficial effects.
    In fact, in 1910, the AMA surveyed physicians and asked 
them what they thought were the most important therapies 
available to them. Number one on the list was ether, which 
enabled anesthetized surgery. Number two was morphine, a 
painkiller but certainly not curative. Number three was 
digitalis for heart ailments. Number nine was alcohol. Number 
10 was mercury.
    The AMA did a similar survey in 1945 and found significant 
advances. Number one was penicillin and the sulfa antibiotics, 
ether had dropped to number four, and digitalis to number five. 
Insulin had been discovered and was added to the list as number 
eight, and number ten was vitamins.
    The question is: What would such a list look like if 
physicians were surveyed today. Insulin might still be on the 
list because it is very important for people with diabetes, but 
its form of purity has changed. Today human insulin is 
available through the common DNA technology. Other innovative 
medicines treat a variety of ailments which were not even 
understood in 1945, such as cancers, autoimmune disorders, 
AIDS, and neurological conditions. The list goes on.
    One only needs to talk to friends or their children to find 
out what kind of medicines are being taken that are available 
today that were not available 5 or even 10 years ago. What has 
changed in the past 20 to 50 years? Someoutstanding biomedical 
breakthroughs have taken place to lead to these new medicines. Heart 
disease, for example, is based on--new treatments for heart disease are 
based on a better understanding of specific receptors or enzymes, how 
they block or activate those enzymes or receptors. Each of these 
advanced treatments is only possible once it is understood how the 
receptor enzyme controls some aspect of health or disease. This is the 
essential basic research which NIH supports. Without this knowledge, 
new medicine would only be found through serendipity, not through 
rational science.
    I may have given the impression with my oversimplified 
account simply that innovation proceeds in a linear, stepwise 
fashion. It is actually sinuous and weblike, with many blind 
paths and interlinking discoveries. With NIH in the lead 
identifying promising paths, the other partners in the process 
will be able to support the intellectual discoveries made 
possible by NIH funding, and to work with NIH and academic 
researchers to take these discoveries out of the test tube and 
into a form where they can provide significant benefits to 
millions of Americans.
    To accomplish this, support for the NIH must be across its 
range of programs, including those which provide means so 
everyone in the community can take advantage of scientific 
opportunities. One other exciting avenue which is just 
beginning to be explored involves the race to develop and 
validate diagnostic measures and tests to diagnose or to 
determine the status of primary diseases before the symptoms 
will develop. Such steps will attempt to prevent disease 
progression in individuals and help researchers to determine 
whether an experimental treatment is or is not effective, and 
thus either make it more widely available, or attempt the 
investigation in order to pursue other opportunities or paths.
    These are some of the exciting opportunities and 
challenges, Mr. Chairman. The Council appreciates your support 
for the NIH, and urges you to consider our request for doubling 
over 5 years and a 15 percent increase. We realize you have a 
tough job and many priorities, but thank you for this 
opportunity. We are willing to take any questions.
    [The prepared statement of Mike Miller, M.D., follows:]


[Pages 18 - 27--The official Committee record contains additional material here.]



    Mr. Porter. Dr. Miller, thank you, sir, for your excellent 
statement. Let me say that the American people do intuitively 
understand the importance of biomedical research, but all of 
us, all of you, have to somehow get the message out as to what 
progress has been made, why it is important to human beings. It 
is not only important to improve lives, it saves health care 
costs tremendously. It improves the quality of life in many 
different ways.
    Somehow we need to get that message out to every American 
person, not just the Members of Congress but the whole 
population at large. All of us have to put our shoulder to that 
wheel if we are going to get the kinds of increases that we 
think are necessary for NIH.
    I would say one other thing. We can only work with what we 
are given to work with. It is the budget process that allocates 
the funds. If we sit and wait until the subcommittee marks up 
its bill and says, oh, fine, you know, and we don't do anything 
up to that point, we could well have lost the opportunity to 
make the kinds of commitments to biomedical research that we 
need to make.
    So the fight is right now with the budget process, and 
getting the kinds of allocations that allow us to make the 
kinds of increases that both of us and everyone in this room, I 
suspect, believe are our goal, and what we think will really 
help advance the cause of biomedical science and improve the 
lives of every person on the planet. Thank you, Dr. Miller.
    Dr. Miller. Thank you. I couldn't agree with both your 
points any more strongly. Thank you.
                              ----------                              --
--------

                                       Wednesday, January 28, 1998.

                                WITNESS

JOHN M. CRAWFORD, D.D.S., Ph.D., AMERICAN ASSOCIATION FOR DENTAL 
    RESEARCH
    Mr. Porter. John M. Crawford, D.D.S., Ph.D., Professor of 
Periodontics, the University of Illinois at Chicago, College of 
Dentistry, representing the American Association for Dental 
Research.
    The Chair welcomes a fellow Chicagoan.
    Dr. Crawford. Thank you very much. Thank you for this 
opportunity to address the committee.
    As you indicated, I am here to represent the American 
Association for Dental Research and its 5,300 members. I would 
like to discuss the 1999 budget allocation to the National 
Institute for Dental Research and the Agency for Health Care 
Policy and Research.
    When you deal with the justification of allocations, you 
have to look back and you have to look forward. You look back 
to document the successful and the productive and wise use of 
funds, and the consequent increase in the health of the 
American people. I think that the NIDR has very good evidence 
that it has done this in a very successful way. This evidence 
we will present in our written testimony, and the Director of 
NIDR will present more evidence for this in his oral testimony.
    However, you have to look forward, and you have to present 
evidence that there are problems yet to be solved. These 
problems can be solved with the manpower and technology 
available. It is this point I would like to discuss briefly 
today.
    I would like to present a scenario for oral health 
management in the 21st century. I think this will focus on 
identification of people at risk for oral disease, and there is 
a lot of evidence that this is not distributed evenly through 
the population of the U.S. There are people at risk and people 
relatively immune.
    We have already saliva-based tests to predict dental decay 
activity, and there is interesting recent work which begins to 
show us that we can predict the activity of gum disease as 
well. Having identified people at risk, we will then be able to 
offer them lifetime immunity from these diseases, and again, 
the National Institute for Dental Research has supported 
research which clearly shows the ability to produce a safe and 
effective vaccine for dental caries, and there is interesting 
work in the animal models for certain diseases, with mice and 
monkeys, that shows we may be able to offer a safe and 
effective vaccine for gum disease as well. So there is a 
scenario for cost-effective health research focusing on at-risk 
populations.
    I would like to take a moment to describe the situation in 
1997, using myself as an example. My dentist tells me to clean 
my teeth 2 minutes with a toothbrush at night, and added to 
that, 2 minutes with dental floss. That adds up to about 36\1/
2\ hours every year, and if I liveto the age of 76, my 
actuarial limit, I will have spent 6 months cleaning my teeth. Life is 
too short.
    I would like to also indicate that if you are susceptible 
to gum disease, you have a lifetime of struggle combatting this 
disease, slowing it down, and trying to arrest it. This is a 
chronic, disabling disease. The treatment is very 
sophisticated, but it is also time-consuming, very costly, and 
leads to lost productivity hours.
    I would like to point out that teeth are the only organs 
that we frequently discard before the end of our lives. And I 
would like to point out that periodontal disease is a major 
health problem in this country. Recent NIDR-sponsored research 
has shown that 35.7 million Americans have at least mild bone 
loss. But more surprisingly and more seriously, 13.1 million 
Americans have moderate to severe bone loss. So this is a 
public health problem of pandemic proportions.
    I would like to envisage in the near future a longer, 
healthier life, but at the end of that life, we will have our 
healthy teeth in our mouths.
    Mr. Chairman, the American Association for Dental Research 
supports the ad hoc group's overall recommendation for NIH of 
$15,695,000,000. More specifically, the American Association 
for Dental Research supports the request for $240,822,000 for 
the National Institute for Dental Research.
    I would also like to take this opportunity to support the 
work of the Agency for Health Policy and Research, because we 
strongly feel that research into health care policy is 
essential for the oral health of the American people.
    I would be happy to attempt to answer any questions that 
you may have.
    [The prepared statement of John Crawford follows:]


[Pages 30 - 35--The official Committee record contains additional material here.]



    Mr. Porter. Dr. Crawford, did you say 15.95 billion?
    Dr. Crawford. The figure that I quoted was $15,695,000,000.
    Mr. Porter. What does that represent?
    Dr. Crawford. That represents a 15 percent increase, I 
believe.
    Mr. Porter. Whose figure is that?
    Dr. Crawford. The ad hoc group's overall recommendation for 
NIH.
    Mr. Porter. I have already given my sermonette about how we 
get there, but let's all work together to achieve that.
    Dr. Crawford. Yes, indeed.
    Mr. Porter. Thank you very much for your good testimony.
                              ----------                              --
--------

                                       Wednesday, January 28, 1998.

                                WITNESS

DAVID RECKER, M.D., AMERICAN COLLEGE OF RHEUMATOLOGY
    Mr. Porter.  David Recker, M.D., Member, ACR Government 
Affairs Committee, representing the American College of 
Rheumatology.
    Dr. Recker. Good morning, Mr. Porter. I am David Recker, 
M.D. I am a rheumatologist from Auburn, Pennsylvania, and I am 
here today to testify for the American College of Rheumatology 
in support of funding for the National Institutes of Arthritis 
and Musculoskeletal and Skin Diseases and for the NIH as a 
whole.
    The ACR is a professional organization of rheumatologists. 
It includes practicing physicians, research scientists, nurses, 
physical and occupational therapists, and other allied health 
professionals. We are dedicated to understanding, treating, and 
hopefully one day curing the more than 100 types of arthritis 
and related disorders that involve joints, skin, bones, and 
connective tissue.
    These conditions often result in severe disability and 
sometimes even in death. In just a few years we face the coming 
of a new millennium. Amid the hoopla and celebration of this 
event, there is a certain amount of uncertainty and 
speculation; but future events await us, our children, our 
children's children. What challenges does our Nation face in 
defining its existence? Will John Elway, one of the last baby-
boomers, continue to be able to play into the 21st century?
    What we do know is that in the year 2000, some 20 million 
American baby-boomers will turn age 50. We also know that this 
Nation's aging population will be stricken with an ever-growing 
burden of arthritis unless something is done to halt the 
progression of these debilitating conditions. A study from the 
Journal of the American Medical Association revealed that 
nearly half of all Americans age 60 and above suffer from some 
form of arthritis.
    Studies have shown that no condition impairs the overall 
quality of life in more older Americans and to a greater extent 
than does arthritis. Swollen and disfigured joints not only 
hurt, they significantly hinder effective individuals in their 
ability to perform even the most basic of daily functions such 
as bathing, dressing, and eating. I can tell you from my 
personal clinical experience how vibrant, happy, productive 
individuals have become dependent, pain-ridden, despondent, and 
even depressed as these afflictions rob them of their 
functional capacity and steal from society their irreplaceable 
productivity.
    As I have already mentioned, our ever-aging population 
means more and more individuals will face the potential ravages 
of arthritis. Providing care for this growing number of 
Americans means that the government, private insurers, and 
indeed society as a whole will bear an ever-increasing economic 
burden.
    While arthritis typically is encountered in older 
populations, in reality no age is spared from this group of 
diseases. Disorders such as juvenile rheumatoid arthritis, 
which can strike children at virtually any age, can lead to 
lifelong disability, disfigurement and pain. Younger adults are 
also subject to the pain and suffering imparted by rheumatic 
diseases. Systemic lupus erythematosus, for example, is 
typically a disease of young, otherwise healthy women.
    Through increased research into the basic pathology and 
origin of these diseases, as well as through increased 
investigation into better treatment and management strategies, 
we can potentially greatly mitigate the costs of these diseases 
in both personal and economic terms, and we can improve the 
overall quality of life of afflicted individuals.
    I am here on behalf of the ACR to voice support for the 
appropriations for the NIH as a whole, and more specifically, 
the ACR joins with the other 200 other organizations who 
together form the Ad Hoc Group for Medical Research Funding to 
support a 15 percent NIH-wide increase in biomedical research 
and training, as indeed a first step to doubling the NIH budget 
in the next 5 years.
    The ACR, along with other members of the Coalition of 
Professional and Voluntary Groups Concerned with the Programs 
of NIAMS, endorsed this increase, translated to this specific 
Institute's budget. This would result in funding NIAMS at 
approximately $316 million, $40 million more than the current 
fiscal year.
    What can we do with this increased funding? Funded in part 
by NIAMS, researchers have recently discovered mutations in 
certain genes which may lead to an overgrowth of synovial 
tissue. The linings of joints in patients with arthritis have 
severely thickened synovia, and it is this thick synovia that 
is felt to be responsible for much of the disease's devastating 
problems. By further investigating how to control and limit the 
growth of synovia, we can potentially mitigate some of the 
ravaging effects of rheumatoid arthritis.
    On a more practical matter, again, researchers funded by 
NIAMS have assessed the medical and economic impact of joint 
replacement, currently an option for Americans enduring the 
pain of arthritis. Joint replacement is nevertheless expensive. 
It costs about $48,000 for a typical hip replacement. The cost 
for nonsurgical intervention, however, has been shown by these 
researchers to be $165,000, three times more expensive. This 
analysis does not even consider the impact of the quality of 
life.
    The cooperative efforts as well, of NIAMS-funded 
researchers, can investigate questions that will further the 
mission of the Institute. Through collaboration with the Aging 
Institute, with the National Institute of Child Health and 
Human Development, and with NEI and NIRD, we can again further 
the mission statement.
    The ACR certainly commends the leadership demonstrated by 
this committee, and you particularly, Mr. Porter, in support of 
the Nation's biomedical research effort. We strongly urge this 
subcommittee to continue its effort and to support the 15 
percent funding in programs of the National Institutes of 
Health.
    Thank you.
    [The prepared statement of David Recker, M.D. follows:]


[Pages 39 - 48--The official Committee record contains additional material here.]



    Mr. Porter. Dr. Recker, thank you very much.
    I have to say, sometimes, often, there is a great deal of 
frustration for the chair, because there are lots of questions 
I would like to ask you about what genetic basis for the 
disease, if any, has been discovered, environmental factors, 
mental factors, and the like. But I don't have time to ask 
those kinds of questions and receive your answers at this 
point. It is true of almost all of our witnesses, and the 
difficulty is, we are limited by the time we have, so we have 
to do the best we can.
    But thank you very much for your testimony today. I very 
much appreciate it. Obviously, we are going to do our very best 
to meet the goals that you have described for NIH and for 
NIAMS.
    Dr. Recker. We will be happy to answer any questions.
                              ----------                              --
--------

                                       Wednesday, January 28, 1998.

                                WITNESS

ROBERT O. KELLEY, Ph.D., ASSOCIATION OF AMERICAN MEDICAL COLLEGES
    Mr. Porter. Robert O. Kelley, Ph.D., associate vice 
chancellor for research and executive associate dean of the 
Graduate College, University of Illinois College of Medicine, 
representing the Association of American Medical Colleges.
    Dr. Kelley.
    Dr. Kelley. Thank you, Mr. Porter.
    My name is Robert Kelley. The University of Illinois, 
especially the University of Illinois at Chicago, and the 
Association of American Medical Colleges thanks the 
subcommittee for their continued support of the National 
Institutes of Health and the other programs I will discuss.
    In particular, Mr. Chairman, we want to thank you for your 
leadership on behalf of medical and biomedical research. I will 
summarize my written statement with the following points.
    The Federal investment in medical research, through the 
NIH, continues to yield a profusion of fundamental and applied 
knowledge transforming the practice of medicine. 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 sustained success of the biotechnology and 
pharmaceutical industries.
    Still, America faces serious health problems, and new 
threats constantly appear. Congressional support for medical 
research has produced a wealth of scientific opportunities to 
answer these challenges. If we are to sustain this momentum and 
translate the promise of science into improved health for all 
Americans, we must redouble our national commitment to medical 
research.
    The Association of American Medical Colleges endorses the 
recommendation of the Ad Hoc Group for Medical Research Funding 
for a 15 percent increase in the NIH budget as the first step 
toward the goal of doubling NIH funding over the next 5 years. 
Science is changing at a breathtaking pace, and we must invest 
in new technologies, new personnel, and new research 
infrastructure if we are to take full advantage of this 
science.
    The Association of American Medical Colleges 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 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. The 
Association of American Medical Colleges strongly urges the 
Congress to provide for flexible but accountable institutional 
support by funding the Biomedical Research Support Grant 
program, BRSG.
    The geographic and specialty maldistributions of physicians 
in the United States are critical issues facing both the 
Congress and the Nation. The Association of American Medical 
Colleges urges the subcommittee to provide additional funding 
for the National Health Service Corps and the health 
professions education programs authorized under Titles VII and 
VIII of the Public Health Service Act, which play a major role 
in addressing these problems.
    The Association of American Medical Colleges thanks the 
subcommittee for sustaining funding in fiscal year 1997 for the 
health professions and nursing education programs, and the AAMC 
joins the Health Professions and Nursing Education Coalition in 
urging the subcommittee to provide at least $306 million for 
fiscal year 1999.
    The drive to cut health care costs raises concerns about 
the quality and appropriateness of care and the choices 
available to consumers. The Agency for Health Care Policy and 
Research is charged with sponsoring health services research 
designed to improve the quality of health care, decrease health 
care costs, and provide access to additional health care 
services in a rapidly changing marketplace. The Association of 
American Medical Colleges believes strongly in the value of 
health services research as this Nation continues to strive to 
provide high-quality health care for all of its citizens.
    The Association of American Medical Colleges endorses the 
Friends of the Agency for Health Care Policy and Research in 
their recommendation of a fiscal year 1999 funding level of 
$175 million for the AHCPR. As you know, it is the major 
Federal program supporting the widely-recognized need to 
strengthen our knowledge of and commitment to evidence-based 
medicine.
    Finally, we wish to emphasize the importance of research, 
training, and health professions programs targeted at the 
racial and ethnic groups that are underrepresented in medicine 
and research. Support for these programs is more crucial than 
ever.
    The Association of American Medical Colleges appreciates 
the continued support of your subcommittee and the support that 
has given to all the programs cited in my written statement. We 
take very seriously the charge you just gave to others and look 
forward to working with you on behalf of those charges.
    [The prepared statement of Robert Kelley follows:]


[Pages 51 - 57--The official Committee record contains additional material here.]



    Mr. Porter. Dr. Kelley, thank you very much.
    Now that my colleague, Congressman Stokes, is here, so that 
both sides of the aisle are represented, I can ask this 
question. Does the AAMC have a reaction to what the President 
said regarding research in his State of the Union Address last 
night?
    Dr. Kelley. We are certainly supportive of biomedical 
research and the goals it brings, to the benefit of the 
American people. I think when we represent all of the people 
and all of our cities, all of our States, I think everything we 
can do as a people to support the goals of biomedical research 
we would certainly stand behind.
    Mr. Porter. What I understood from the President's remarks, 
and, Lou, you can correct me if I am wrong, but he said a 50 
percent increase in all research, all basic research, over the 
next 5 years, not the 100 percent increase that our witnesses 
here have been talking about.
    Dr. Kelley. I think the AAMC would certainly stand behind 
doing as much as we could. We would certainly support the ad 
hoc group's recommendations and I think the position that you 
are representing, trying to do as much as we possibly can for 
NIH and biomedical research.
    Mr. Porter. Tell the President and the Committee on the 
Budget.
    Dr. Kelley. We certainly shall. Thank you.
                              ----------                              --
--------

                                       Wednesday, January 28, 1998.

                                WITNESS

ERIC NEILSON, M.D., AD HOC GROUP FOR MEDICAL RESEARCH FUNDING
    Mr. Porter. Eric Neilson, M.D., the C. Mahlon Kline 
professor of medicine and pediatrics at the University of 
Pennsylvania School of Medicine, and founding president of the 
Association of Subspecialty Professors, representing the Ad Hoc 
Group for Medical Research Funding.
    Dr. Neilson. Good morning, Mr. Porter. Thank you.
    I am testifying on behalf of the Ad Hoc Group for Medical 
Research Funding, as the first coalition of nearly 200 
organizations representing patient groups, medical scientific 
societies, academic and research organizations, and industry.
    Mr. Chairman, we thank you and the members of the 
subcommittee for making the National Institutes of Health one 
of your very highest priorities.
    I would like to make the following points to summarize my 
written statement. As a consequence of the Federal commitment 
to medical research, an ever expanding base of scientific 
knowledge about health and diseases is being developed that is 
revolutionizing both the conduct of the scientific inquiry and 
the practice of medicine. If we are to sustain this momentum 
and reap the full benefits of this investment, then the Nation 
must commit to its plan for significant and sustained funding 
for the NIH.
    We commend the leadership demonstrated by the congressional 
sponsors of proposals to double the NIH budget over the next 5 
years. For fiscal year 1999, the Ad Hoc Group supports a 15 
percent increase in NIH funding as the first step towards the 
goal of doubling the NIH budget over the next 5 years. We 
believe this increase is justified both by the health needs and 
research capacity of the Nation. Such a long-term commitment 
will also stabilize sensible planning through use of those 
funds.
    Congressional support for the NIH over the past 40 years 
has produced a wealth of opportunities in basic and clinical 
science that will ultimately alleviate and eliminate many of 
the health challenges we currently face. In addition, medical 
research plays an important role in the growth of biotechnology 
and pharmaceutical industries.
    I personally have been supported throughout my career by 
the NIH. I am now a principal investigator of five NIH grants. 
I serve on the National Advisory Council for the National 
Institutes on Diabetes, Digestive and Kidney Diseases.
    Permit me to make the following observations on the needs 
for additional funding that we are recommending. Science is 
changing at a revolutionary pace. It requires investment in new 
technologies and a renewed research infrastructure, including 
people with appropriate skills to meet this new science.
    As someone who has trained numerous physician scientists 
over the last 25 years, I can say that one of the most pressing 
needs we face in the area of training, particularly for 
clinical research, is for physician scientists. We need to 
expand clinical research training opportunities. Additional 
funds could be used to raise the stipends and to lengthen the 
training period for clinician scientists to at least 3 years. 
We have a crisis in the Nation in attracting and retaining new 
investigators in these areas. Direct attention to this budget 
item would be most important.
    Additional funds could also be used to enhance clinical 
research infrastructure, including increased support for 
general clinical research centers. A reinvigorated GCRC program 
could serve as a focal point for clinical training as well as 
expand clinical research activities. This would happily avoid a 
new administrative entity and focus initial efforts towards 
institutions with established records of clinical research 
excellence.
    At the same time, of course, we must also sustain and 
enhance our basic research, including increased support for 
current researchers, as well as promoting opportunities for new 
investigators in those areas of biomedical science that have 
been underfunded.
    We particularly need to enhance the institutional research 
capacity, including renovation of outdated facilities, creating 
new approaches to support animal facilities, providing state-
of-the-art instrumentation and other research equipment, 
promoting informational and computer technology, and 
substantially increasing the funding for research support 
programs under the National Center for Research Resources.
    Finally, continued progress in medical research depends on 
the advancement in related fields of science, including 
chemistry, physics, mathematics, and engineering. We urge the 
administration and the Congress to consider the breadth of this 
Nation's research efforts as interdependent and fund them 
accordingly.
    In closing, we recognize the difficulty of achieving the 
goal we have articulated under the Center spending caps. A 
national commitment to doubling the NIH budget over the next 5 
years will necessitate additional resources to sustain the 
growth of the coming years. The Ad Hoc Group urges the Congress 
to explore carefully all options to identify new resources. We 
feel that leveraging other entities and other opportunities is 
very important to this process in bringing other individuals 
into the discussion.
    We stand ready to work with the supporters of medical 
research on Capitol Hill to achieve this goal, beginning with 
fiscal year 1999 and beyond, and thank you very much for your 
time and attention. I am happy to answer any questions relating 
to my comments.
    [The prepared statement of Eric Neilson, M.D., follows:]


[Pages 61 - 69--The official Committee record contains additional material here.]



    Mr. Porter. Dr. Neilson and Dr. Kelley, I want to explain 
that I was encouraged by what the President had to say in his 
speech last night. He talked, Dr. Neilson, not only about 
biomedical research, but all basic research.
    Dr. Neilson. Yes.
    Mr. Porter. For the reasons you have stated, but also for 
the strategic political reason that I do not think we can set 
one type of research against another in our Federal budget, 
they have to go relatively hand in hand.
    I think that the President's remarks were very encouraging, 
and all of you probably realize--at least this is the way I 
think about it--that when the President of the United States 
gives support for a figure for NIH that is an increase of about 
8.2 or 3 percent, that becomes, to us, a floor from which we 
perhaps, if we get the resources, can work and even do better.
    So I feel very encouraged by what the President had to say. 
I said that publicly, both to the electronic and print media, 
and I think it indicates a new commitment from the White House 
to put this at a very high priority.
    Having said that, all of us have to realize that the 
President's budget has about $100 million of new revenues that 
very possibly could never materialize. There are many in the 
Congress who are very opposed to any kind of new revenues, even 
tobacco taxes, which I think are very justified, and whether we 
can get the revenue increases to support the spending increases 
is at this point, I think, very problematical.
    I was very encouraged by what the President had to say, and 
I have to say, Lou, I said that to everybody who asked and, in 
fact, some who didn't ask.
    So thank you, Dr. Neilson, for your very good testimony. We 
appreciate it, and we are going to do our very best to work 
very closely with the Ad Hoc Committee and push very hard to 
put biomedical research at a high priority within all of the 
programs of the administration.
    Thank you.
                              ----------                              --
--------

                                       Wednesday, January 28, 1998.

                                WITNESS

ROBERT R. RICH, M.D., THE AMERICAN ASSOCIATION OF IMMUNOLOGISTS
    Mr. Porter. Robert R. Rich, M.D., vice president and dean 
of research, Baylor College of Medicine, Houston, and chairman 
of the Committee on Public Affairs, representing the American 
Association of Immunologists.
    Dr. Rich, welcome.
    Dr. Rich. Thank you very much, Mr. Chairman. It is a 
pleasure to have the opportunity to represent the 6,000 
scientists of the American Association of Immunologists.
    I would like to begin this morning by simply saying how 
much we are indebted to you and to this committee for the 
extraordinary support you have given to the biomedical research 
efforts over the past 3 years.
    Indeed, at a time when you have been mandated to cut more 
than $50 billion from the allocations to this subcommittee, you 
have managed to provide important increases in the allocation 
to NIH in every year, and we are very, very grateful for that.
    We are also very grateful to you and to Mr. Miller for your 
attention to an issue that we called to your attention several 
years ago relating to the regulatory burdens that we face as we 
try to make the research that we do with your appropriated 
dollars increasingly more efficient. We understand that this is 
going forward now, as you have called for a private sector 
study from NIH to look into this issue. We are anxious to work 
with that study in any way we can tobe helpful.
    Mr. Porter. Dr. Rich, I want to say that Dan Miller has 
taken the lead on that and done, I think, a very, very fine job 
of putting that issue before us and pushing hard to get it 
resolved.
    Dr. Rich. We are very grateful for that, and we very much 
appreciate that.
    What I would like to talk about today are two issues. The 
first is a problem and the second is an opportunity.
    The problem we have already heard about from the AAMC. That 
is, with the increasing competitive managed care environment, 
we find that our academic medical centers really can no longer 
afford to support the research faculty which is so vital to the 
activities of NIH.
    Interestingly, as they indicated to you, a solution already 
exists in the law; that is, the Biomedical Research Support 
Grant program, or BRSG. Indeed, in 1990, NIH said, this program 
recognizes the need to support new investigators, to explore 
new and unorthodox research ideas and techniques, to respond 
promptly to opportunities that develop in the course of active 
and diverse research programs, and to provide central shared 
resources.
    For the 27 years of its funding, the BRSG program received 
a median of 2.4 percent of the research project grant budget 
that was given to the institutions. This year, that would 
equate to approximately $186 million. However, in 1992 funding 
for the BRSG program was discontinued over concerns regarding 
its accountability.
    Mr. Chairman, I submit that that is a problem we can fix. 
Last year, I advocated that we reestablish the BRSG program 
with full peer review and accountability. The subcommittee 
agreed with this proposition, requesting that the NIH study the 
feasibility of reestablishing a revised Biomedical Research 
Support Grant program.
    I come before you today requesting an appropriation for a 
new BRSG program on an experimental basis for a 3-year trial 
period. I would suggest an appropriation of $155 million in the 
first year, which would be about 2 percent of the research 
program grants budget.
    I would further suggest that such a program be established 
based on three fundamental principles: One, that the monies be 
used for currently defined purposes; second, that the funding 
be distributed according to a process of strict institutional 
peer review; and, third, that the NIH be charged to develop a 
mechanism for accountability. I provided details of each of 
these principles in my written testimony.
    This brings me, then, in closing, to the opportunity. This 
year we celebrate the 20th anniversary of Edward Jenner's 
discovery of the principles of vaccination. Within the past 50 
years, we have seen many of the historical scourges of mankind 
essentially disappear. Indeed, the target of Jenner's work, 
smallpox, has been eradicated from the Earth.
    Yet, I need not remind the members of this subcommittee 
that we still face formidable threats. We all heard about the 
bird flu from Hong Kong in very recent weeks. And recognizing 
that the only way we are going to really confront the problem 
of HIV and defeat it is to develop an effective vaccine, the 
NIH last year established a vaccine research center on the 
campus in Bethesda. The AAI supports this initiative of vaccine 
development but would like to make some suggestions to you in 
terms of how it might be modified, because we believe that, 
first of all, the time is now to extend it beyond the NIH 
campus and to extend its focus beyond HIV.
    Indeed, we recognize that there are many important scourges 
of an infectious nature that remain before us. Perhaps more 
excitingly, however, is the idea that the principles behind 
vaccination can now, with new scientific opportunities, be 
turned to diseases of a noninfectious nature. We are very 
excited, at AAI, about the possibility that the human immune 
system might be programmed to attack a variety of diseases 
before they develop.
    What kind of diseases am I thinking about? I am 
particularly attracted to the notion of autoimmunity and 
cancers. That is right, Mr. Chairman. As an immunologist, I can 
tell you that we can look to the day when we might be able to 
vaccinate our children against lupus, multiple sclerosis, 
diabetes, and rheumatoid arthritis, much as we vaccinate them 
against measles and polio today.
    Thank you again very much for the subcommittee's support. 
We appreciate the opportunity to testify before you.
    [The prepared statement of Robert Rich, M.D., follows:]


[Pages 73 - 81--The official Committee record contains additional material here.]



    Mr. Porter. Dr. Rich, thank you very much.
    I have one quick question. Is the BRSG program going to 
appear in the President's budget? In other words, is he 
suggesting that we provide this funding, do you know?
    Dr. Rich. We have not seen that. I would be surprised if we 
see a line item appropriation. I think that--but we have not 
seen the details of the President's budget.
    Mr. Porter. Thank you very much. We appreciate your 
testimony.
                              ----------                              --
--------

                                       Wednesday, January 28, 1998.

                               WITNESSES

CLAUDIA E. MILLER, Ph.D., M.T., AMERICAN SOCIETY OF CLINICAL 
    PATHOLOGISTS
SARA BROWMAN, JOHN EDWARD PORTER SCHOLAR
    Mr. Porter. Dr. Claudia Miller, director of Medical 
Technology Programs and chair of Allied Health at National 
Lewis University in Evanston, Illinois--that is my hometown--
accompanied by Sara Browman, the Porter Scholar.
    Hi, Sara.
    Welcome, Dr. Miller.
    Dr. Miller. Good morning, Chairman Porter, Mr. Stokes.
    I represent the American Society of Clinical Pathologists. 
I have served on their Educators Committee, and I have been a 
regional representative and recruiter.
    The American Society of Clinical Pathologists, the ASCP, is 
a medical not-for-profit society which has as its goal 
scientific and educational purposes. It has 75,000 members, and 
they include not only board-certified pathologists but other 
physicians, Ph.D. scientists, and board-certified technologists 
and technicians.
    The allied health professions serve 60 percent of the 
health care work force today, and we serve in all different 
tiers, from hospitals to health care, extended health care, 
skilled nursing, and even physicians' offices.
    The Allied Health Grant program, which is under section 
767, Title VII, of the Public Health Service Act, has been very 
effective in dealing with allied health needs, but more 
resources are needed simply because we need more allied health 
professionals to serve the United States population. Shortages 
are evident by vacancy rates, and I will give you some examples 
of those.
    In laboratory medicine, we have in histotechnology an 11.7 
percent shortage. These are the people who prepare tissues for 
examination. In cytotechnology supervisors, the people who look 
at cells to assess the status of cancer malignancies, there is 
a 14.1 percent.
    Some people argue that it is not the responsibility of the 
Federal Government to aid allied health programs. We agree. The 
private sector does have to take responsibility. The ASCP does 
this by offering 50 scholarships annually to medical 
technology, medical laboratory technicians, histotechnology 
technicians, and also cytotechnology students.
    I have here beside me Sara Browman, who is the 1998 
recipient of the scholarship named in your honor, Mr. Porter, 
because of your support to allied health.
    But there is a difference. The ASCP gives monies to 
students like Sara, but the Allied Health Project Grant program 
gives money to schools so that students like Sara will have the 
opportunity to receive an education and be able to work in 
allied health.
    We have very many success stories. One is at the University 
of Nebraska Medical Technology Program, where, with the third 
$358,000 they received in 1992, they were able to start a world 
health program. Fifty-three medical technology students 
graduated, and 94 percent remained in the rural area to serve 
people in clinical laboratory medicine. They are now self-
sufficient, and many of their students from the regular on-
campus program are actually seeking employment in rural areas.
    The University of Maryland, using a grant that they 
received in 1991, has addressed the problem of minority 
recruitment and retention. I am very happy to tell you that in 
1996 the Medical Technology Program had 52 percent minority 
students, and they have a 95 percent retention rate. This is at 
a majority institution, and the retention rate is one of the 
highest in the Nation.
    The monies from Allied Health Project Grants actually are 
used to help establish critical need programs. Project outcomes 
are tracked; information is shared with other programs so that 
they are able to go out and start programs that are needed 
using limited resources.
    Keeping in mind that these programs have been so successful 
and that we so desperately need more allied health 
professionals, we urge you to consider funding the Allied 
Health Projects Grant program for fiscal year 1999 for $10 
million and the Health Professions Training program for $306 
million.
    Thank you for your consideration.
    [The prepared statement of Claudia Miller follows:]


[Pages 84 - 91--The official Committee record contains additional material here.]



    Mr. Porter. Thank you very much, Dr. Miller.
    Sara, your hometown is what?
    Ms. Browman. Rockford, Illinois.
    Mr. Porter. Rockford, Illinois. My wife's mother lives in 
Rockford, Illinois, so I am there frequently. We welcome you. I 
am very honored that you are the Porter scholar.
    There are a number of scholarships that you have named for 
a number of different individuals at National Lewis; is that 
correct?
    Dr. Miller. We have a lot of scholarships, yes, especially 
Mr. Lewis, who gave us all the money for our university.
    Mr. Porter. Especially Mr. Lewis. That makes good sense.
    Well, Sara, we appreciate your joining Dr. Miller this 
morning, and we wish you well in your career. We are honored 
that there is a scholarship in my name and that you are the 
scholar. Thank you both for being here.
    Mr. Stokes.
    Mr. Stokes. Mr. Chairman, I would just like to take a 
moment and thank Dr. Miller for sharing with us the success of 
her minority recruitment program. This is welcome news, 
particularly at a time when, because of the assault upon 
affirmative action, we are finding now that throughout the 
Nation there has been a considerable drop in even 
theapplications by minority students because of the fear and the actual 
threat of not being accepted, and so forth.
    The fact that you are having this type of success with it 
is very encouraging, and I think it speaks loud and clear to 
other institutions, particularly majority institutions, as you 
have cited, of the absolute need to do something more in this 
area. I really appreciate your sharing this with us.
    Dr. Miller. Thank you, Mr. Stokes.
    I think that the success of the program at the University 
of Maryland is because of early intervention. They start in 
elementary school, track them through middle school, and then 
continue on until they receive their bachelor's degree.
    Mr. Stokes. I may want to get a chance to talk with you a 
little further about your program and get some information. 
Maybe we can help some of the other institutions in this 
respect.
    Dr. Miller. That would be wonderful. Thank you very much.
    Mr. Stokes. Thank you.
    Mr. Porter. Thank you, Dr. Miller and Ms. Browman.
                              ----------                              

                                       Wednesday, January 28, 1998.

                                WITNESS

JOHN F. NEYLAN, M.D., AMERICAN SOCIETY OF TRANSPLANT PHYSICIANS
    Mr. Porter. Dr. John F. Neylan, President-Elect of the 
American Society of Transplant Physicians, testifying on behalf 
of the Society.
    Dr. Neylan. Mr. Chairman and members of the subcommittee, 
thank you for the opportunity to present testimony on behalf of 
the American Society of Transplant Physicians. I am John 
Neylan, Medical Director of Kidney Transplantation at Emory 
University and President-Elect of the American Society of 
Transplant Physicians.
    The ASTP, which receives no government support, has over 
1,100 physicians, surgeons, and scientists actively engaged in 
the research and practice of transplantation medicine and 
immunobiology, and represents the largest and broadest number 
of transplant professionals in the United States.
    Over the past 30 years, transplantation of solid organs has 
moved from experimental to accepted therapy, with over 20,000 
performed in 1997 in the U.S. The success of this procedure has 
improved greatly, and now almost all solid organ transplant 
recipients have an 83 to 97 percent survival rate at 1 year. 
Much of this success can be attributed to the basic and 
clinical research that has been funded by previous NIH 
appropriations. Our better understanding of the body's response 
to foreign proteins has led to countless other breakthroughs in 
all areas of medical science.
    However, we still have a long road ahead. During the next 
hour, four new names will join those 56,793 individuals in this 
country waiting for a solid organ transplant. By the time I get 
home to Atlanta this evening, 10 individuals will have died 
because the wait for a transplant was just too long. For those 
fortunate individuals who received this gift of life, the long 
term still holds potential pitfalls and obstruction for poorly 
understood mechanisms of immune destruction as they exact a 
relentless attrition.
    But, Mr. Chairman, with increased funding for research, 
there is hope. Research is central to all that occurs in the 
transplantation process. The ASTP believes that we are on the 
threshold of many important scientific breakthroughs in the 
areas of immunology and cell biology.
    We are on the threshold of developing safer and more 
effective means of immunosuppression to combat the complex 
pathways of acute and chronic rejection. With further insights, 
we may see the dawn of conditioning regimens that may one day 
lead to indefinite and drug-free immunologic tolerance. In 
parallel, we may devise means to overcome the daunting 
immunologic hurdles of xenotransplantation, the transplantation 
of a potentially limitless supply of animal organs.
    Finally, advances in developmental cellular biology may one 
day lead to reconstruction of human tissues and organs damaged 
by disease, and restore these to health and normal function. 
None of these goals are possible without strong support for 
research.
    Because of this, the ASTP strongly urges the subcommittee 
to continue its leadership in the area of biomedical research 
and provide a 15 percent increase in funding for the NIH for 
fiscal year 1999. By continuing to increase the level of 
funding, this subcommittee will achieve the goal of doubling 
the NIH budget in 5 years, a goal supported by the ASTP, and as 
you have just heard, by the societies who are members of the Ad 
Hoc Coalition for Biomedical Research.
    With this level of support, this subcommittee and the 
Congress as a whole will have the personal satisfaction of 
knowing that they are responsible for expanding the general 
transplantation research authority at the NIH, and in turn will 
be providing new hope to the countless citizens of this country 
who may one day benefit by these efforts.
    Thank you, Mr. Chairman and all the members of your 
committee for allowing me to present the views of the ASTP and 
the transplant community.
    [The prepared statement of John Neylan, M.D., follows:]


[Pages 95 - 102--The official Committee record contains additional material here.]



    Mr. Porter. Dr. Neylan, thank you very much for your 
excellent statement. You kind of give us a hope for the future 
that--I remember talking to a physician about 10 years ago 
saying that we are on the edge of being able to replace worn-
out or defective organs, and now you are telling me that that 
is increasingly coming true, and all we need is a stronger 
commitment to research to make it happen even more rapidly.
    So we appreciate very much your testimony this morning. 
Thank you for being with us.
    [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]
                              ----------                              --
--------

                                       Wednesday, January 28, 1998.

                                WITNESS

DR. HARRY S. JACOB, THE AMERICAN SOCIETY OF HEMATOLOGY
    Mr. Porter.  Dr. Harry S. Jacob, President-Elect of the 
American Society of Hematology, representing that society.
    Dr. Jacob.
    Dr. Jacob. Good morning.
    Thank you, Mr. Chairman, for letting me meet with you 
today. I am a professor of medicine at the University of 
Minnesota and President-Elect of the American Society of 
Hematology. Our society has over 8,000 active members, and 
probably hosts approximately 15,000 attendees at our annual 
scientific meeting. Our membership includes physicians who 
treat blood diseases and scientists who study the causes of 
those diseases.
    I would like to begin by thanking you for your sustained 
support of biomedical research, and by endorsing your vision 
that this support should be broad and flexible.
    I shall take the next few minutes to discuss how your 
additional support might help us in our mission to improve 
patient care. I shall in this forum use two relevant examples: 
bone marrow transplantation and gene therapy. I will provide 
other examples in my written testimony.
    Bone marrow transplantation is an increasingly-utilized and 
lifesaving procedure that was invented by hematologists. In 
fact, a member of our society, Don Thomas, recently won the 
Nobel Prize for his pioneering work in this area. At present, 
the procedure is used to treat patients with various forms of 
leukemia, as well as bone marrow failure and rare 
immunodeficiency syndromes which affect particularly children.
    Also, promising new uses of the technique have been 
reported in hematologic patients with sickle cell anemia and 
Cooley's anemia. There is also growing excitement about its 
ability to treat nonhematologic diseases like systemic lupus, 
rheumatoid arthritis and multiple sclerosis.
    The major limitation in bone marrow transplantation is that 
the procedure works best when patients have a genetically 
compatible brother or sister. Unfortunately, this favorable 
situation occurs for only 1 in 4 transplant candidates. Others 
must settle for riskier transplantations from genetically 
matched but unrelated donors, or they may have to forego the 
procedure altogether. Research is needed to understand how to 
safely transplant partially matched marrow so that this 
lifesaving procedure may become available to many more 
patients.
    The second example I would like to discuss is in the area 
of gene therapy, an area of great interest to all biomedical 
scientists and physicians. The bone marrow is the usual source 
of cells for gene therapy. Sickle cell disease, many forms of 
immunodeficiency, and severe bleeding disorders, like 
hemophilia, are just a few examples that may be amenable to 
correction with gene therapy.
    The application of this technology is impeded, however, as 
we are still unable to regularly transfer genes into cells at 
high enough levels and maintain these genes in active form for 
prolonged periods of time. Fundamental research is needed to 
improve our understanding of these processes so this technology 
may become more useful. This will require a larger commitment 
to basic research, but successful resolution will reap enormous 
rewards for diverse patients. I predict that the appropriate 
use of gene transfer techniques will soon astonish even the 
most cynical, and remarkably improve our Nation's health.
    The American Society of Hematology is committed to research 
because our members constantly confront the limits of medical 
knowledge as they treat catastrophic diseases of the blood, 
like leukemias, lymphomas, and sickle cell anemia. Our members 
are also clear that what they are able to do for their patients 
is based almost entirely on the fruits of previous research.
    One example of our commitment to research is that we 
allocate a major fraction of our limited resources to the 
funding of fellowships and grants to young investigators. Our 
members know, however, that our site, although well-
intentioned, can merely seed and supplement what the Federal 
Government sustains through its funding of research.
    We ask that you continue your commitment to all high-
priority research by supporting a 15 percent increase in NIH 
funding for fiscal year 1999, as recommended by the Ad Hoc 
Group for Medical Research Funding. We fervently hope that you 
can build on the administration's proposal and develop a method 
to double the NIH budget in the next 5 years.
    On behalf of our society, thank you for your attention 
today, and for your very hard work and generous past support.
    [The prepared statement of Dr. Harry Jacob follows:]


[Pages 105 - 115--The official Committee record contains additional material here.]



    Mr. Porter. Dr. Jacob, thank you for your testimony. I am 
sure you are aware that whenever the subject of bone marrow 
transplantation arises, there is always at the table in this 
subcommittee a champion of that cause, and that is Bill Young 
of Florida. So we put that at a high priority, not only because 
of its intrinsic need and value, but because Bill was always 
there telling us we should. So we appreciate very much your 
testimony this morning. Thank you for coming down to be with 
us.
    Dr. Jacob. It is a pleasure to meet you finally.
    Mr. Porter. We have now completed 10 of the 20 scheduled 
witnesses this morning. We have done so in approximately an 
hour. We are going to stand in recess for about 3 minutes, and 
then attempt to allow the next 10 witnesses the remaining hour. 
We stand in recess briefly.
    [Recess.]
                              ----------                              

                                       Wednesday, January 28, 1998.

                                WITNESS

DR. WADI N. SUKI, THE AMERIAN SOCIETY OF NEPHROLOGY
    Mr. Porter. The subcommittee will come to order. Our next 
witness is Dr. Wadi N. Suki, President of the American Society 
of Nephrology, representing that society.
    Dr. Suki. Thank you, Chairman Porter, for allowing me the 
opportunity to speak before your committee this morning.
    I am Wadi Suki. I am a professor of medicine and Chief of 
Nephrology at Baylor College of Medicine in Houston. I am the 
current President of the American Society of Nephrology.
    Our society is the largest professional society in 
nephrology. We have a membership of some 6,500 clinicians and 
scientists dealing with function and disorders of the kidney, 
and dedicated to curing kidney disease. We are here to speak in 
support of the increased funding of the National Institutes of 
Health in general, and the National Institute of Diabetes, 
Digestive and Kidney Diseases, in specific.
    Mr. Chairman, this country has a very heavy burden in terms 
of patients with kidney disease. In our country today there are 
approximately 300,000 patients who suffer from end-stage renal 
disease. Their numbers increase by approximately 70,000 new 
patients every year.
    The cost of taking care of these patients is staggering. 
The total cost approximates some $13 billion, and these 
patients are increasing, had been increasing at the rate of 
some 9 percent per year. Hypothetically, due to some of the 
advances in research, the rate of growth seems to be slowing 
down, but in the last 3 years has been on the order of about 7 
percent per year. At this rate, we anticipate in the next 10 or 
15 years there will be something between 600,000 and 900,000 
patients with kidney failure in this country.
    The major causes of kidney failure are diabetes and high 
blood pressure. These two disorders affect disproportionately 
some of the minority groups in our country, particularly 
Hispanics and African-Americans. The incidence of kidney 
failure in the African-American is 5 or 6 times that in the 
white American. The incidence of end stage kidney failure in 
the Hispanic American is 2 to 3 times that in the white 
American. So high blood pressure and diabetes represent major 
concerns for our society and our membership.
    In spite of the huge cost to our Nation for treating 
patients with end stage renal disease, the expenditure on 
research on kidney disease is only about 2 percent of the total 
cost. We think that increased spending on research in this area 
will bear important fruit and hopefully increase the quality of 
life, save lives, and hopefully in the end save our country 
money as well.
    Now, major advances have been made in research in kidney 
disease in the past several years. Experiments in Dr. Brenner's 
laboratory in Boston in rats have led to innovations of 
treatment that now has been shown to reduce the development of 
kidney failure in diabetes by 50 percent. This is estimated to 
save this country something on the order of $2.6 billion in the 
next 5 years. This is a testimony to how good an investment in 
basic research is, in that it would eventually bear fruit at 
the clinical level.
    There have been very many other advances in recent years. 
The gene for cystic kidney disease and a variety of other 
genetic and familiar diseases have been cloned and the defects 
identified. It is our hope that better understanding of the 
functions of all of these genes will culminate in cure and 
prevention.
    There are a lot of other studies that demonstrate exciting 
new findings about arresting experimental nephritis in 
experimental animals. These advances are about to be tried in 
human beings, so there is a lot of promise for new 
breakthroughs and new advances.
    There have been many advances. When we look back to when I 
started in nephrology back around 1965 and where we are today, 
some 30 years later, major advances have been made. Dialysis 
and transplantation were dreams. Now they are realities. 
Unfortunately, as you have heard from my colleague, Dr. John 
Neylan, neither treatment, dialysis, nor transplantation is 
currently perfect. Many more advances need to be made and much 
more research needs to be made.
    [The prepared statement of Wadi Suki, M.D., follows:]


[Pages 118 - 124--The official Committee record contains additional material here.]



    Mr. Porter. Dr. Suki, our time is up. Let me say two 
things. First, and I say this often, but I want to emphasize 
it; none of us up here consider these matters in a vacuum. My 
wife has diabetes, so I know the dangers of that disease and 
how it affects the population of our country and the whole 
world.
    Secondly, I recently have been shown some home dialysis 
units that promise, they tell me, to vastly reduce the cost, 
which is a major cost in your field. Do you have anything to 
tell us about that technology and whether it is as promising as 
I have been led to believe?
    Dr. Suki. Yes. Indeed, dialysis in the home is now feasible 
and has been for some time. It is practiced in most large 
centers and in many smaller ones, as well. Somewhere between 12 
and 15 percent of patients on dialysis actually do undergo 
dialysis in the home, and dialysis is being perfected, but I 
think the point that I have tried to make earlier is that 
dialysis does not replace the normal kidney, and therefore, our 
task should be to try to prevent kidney disease.
    Mr. Porter. Absolutely. My understanding from the people 
that I talked to is that if this could be very broadly adopted, 
that it would save a great deal in terms of health care costs 
and, in a sense, free up dollars that could be spent for 
research in finding a way to prevent or cure the disease.
    Dr. Suki. Very importantly, it could save a great deal in 
terms of personal hardship. Patients on dialysis have to travel 
to a dialysis facility 3 times a week, which is a considerable 
hardship and cost.
    Mr. Porter. Thank you very much for your testimony, Dr. 
Suki.
    Dr. Suki. Thank you for allowing me to be here and for your 
support of biomedical research.
                              ----------                              --
--------

                                       Wednesday, January 28, 1998.

                                WITNESS

JOSHUA M. JAVITS, ALS ASSOCIATION
    Mr. Porter. Joshua M. Javits, a member of the board of 
trustees representing the ALS Association.
    Mr. Javits, it is nice to see you again. Thank you for 
joining us.
    Mr. Javits. Thank you very much.
    Mr. Chairman and members of the committee, thank you for 
the opportunity to testify before the committee on behalf of 
the Amyotrophic Lateral Sclerosis Association and the 30,000 
Americans afflicted with ALS, most commonly known as Lou 
Gehrig's disease.
    Speaking for myself and ALS, I would like to express my 
deep appreciation to you, Mr. Chairman, and the members of your 
subcommittee who over recent years have provided strong 
leadership and support for the research projects on ALS being 
undertaken by the NIH and the NINDS. I would also like to offer 
support for congressional efforts to double NIH's research 
funding over the next 5 years. As we all understand, a dollar 
spent on the disease today saves many lives and many dollars 
over the years to come.
    We pledge to work with you, Mr. Chairman, and your 
colleagues on that crucial initiative. As you know, for the 
last 6 years the subcommittee has included language in the 
Labor-HHS appropriations bill that is specifically aimed at 
increasing the funding for ALS research at NIH within the 
existing NINDS budget. All of us associated with ALS are 
appreciative for these efforts and we look forward to working 
with the subcommittee this year and in the years to come until 
ALS is eliminated.
    Mr. Chairman, I am a son of the late Jacob Javits who 
proudly served this country for 24 years as a Senator from the 
State of New York and as a Member of the House of 
Representatives for 8 years. I stress this point because my 
father died in 1986 after a valiant struggle with ALS, a 
degenerative and always fatal disease. While in Washington and 
later in private life, my father maintained an amazing schedule 
of practicing law and giving speeches and writing articles 
despite his diagnosis with ALS. As the disease progressed he 
required life support, including a respirator and a wheelchair, 
and eventually becoming virtually paralyzed.
    ALS has also claimed the lives of other notables, and took 
the name of the baseball great, Lou Gehrig, as well as actor 
David Niven, jazz great Charles Mingus, boxer Ezra Charles, and 
former Vice President Henry Wallace, and the developer James 
Rouse.
    I serve as a member of the board of trustees of ALS. And 
ALS, to be specific, is a progressively degenerative 
neuromuscular disease that attacks the nerve cells and pathways 
in the brain and spinal cord. Motor neurons, among the largest 
of all nerve cells, reach from the brain to the spinal cord and 
from the spinal cord to the muscles throughout the body. When 
these motor neurons die, as with ALS, the ability of the brain 
to start and control muscle movement dies with them. The 
voluntary muscle action is affected and patients become 
immobilized, eventually leaving the person unable to speak or 
to eat or to breathe. Yet throughout the degeneration the mind 
remains completely intact.
    ALS was first identified in 1869, but only recently have 
there been real discoveries that significantly advance the 
medical and scientific community's understanding of the 
disease, which underscores our belief that a cause and a cure 
can be found. To date there are no known causes, it is not 
known what the cause is, nor is there a cure for those 
afflicted with ALS. The majority of people diagnosed live only 
2 to 5 years. Over 5,000 new cases are diagnosed each year.
    ALS knows no boundaries and can strike anyone, regardless 
of age, race, color, or geographic origin. It is not a rare 
disease. It is projected that about 300,000 Americans alive and 
well today will ultimately die from ALS, more than die from 
Huntington's disease or multiple sclerosis.
    Mr. Chairman, I want to mention something we are very proud 
of. Last year, with the inspired leadership of the late 
Congressman Walter Capps and Chairman Ben Gilman, H.R.2009, the 
Amyotrophic Lateral Sclerosis Research and Treatment Act of 1997, was 
introduced in the House.
    This bill was the first bill Congressman Capps introduced 
while in the House and we are deeply honored by that fact. We 
are appreciative to Chairman Gilman for carrying forward the 
legislation in the wake of Congressman Capps' tragic death. The 
bill would allow Medicare to cover the cost of drugs used to 
treat ALS and would waive the 24-month waiting period for 
disabled persons to be covered by Medicare.
    The last point is especially critical for ALS patients, who 
on average do not live more than 2 to 3 years after they become 
disabled. We believe that Congress, out of a sense of fairness 
and sound public policy, should look favorably on this 
legislation. To date 61 of your colleagues have cosponsored 
H.R. 2009 and we are hopeful that this number will continue to 
grow.
    In the area of research, a major portion of ALS 
Association's annual budget is committed to fund ALS-specific 
research. The Association's grant program follows the format 
and rating procedures established by NIH. The Association, in 
the last 24 months, has funded over $4.7 million in funding. I 
would point out that the Association's research effort amounts 
to about 30 percent in addition to what NIH puts into ALS 
research.
    Mr. Chairman and members of the committee, please accept 
our sincere appreciation for all the support you have provided 
for those afflicted with ALS and their families, the 30,000 
people afflicted with ALS. We strongly urge Congress to 
continue the subcommittee's commitment to long-term medical 
research and to provide the funds necessary for NIH to carry 
out the mission. Thank you very much.
    [The prepared statement of Joshua Javits follows:]


[Pages 128 - 138--The official Committee record contains additional material here.]



    Mr. Porter. Mr. Javits, thank you for again appearing 
before our subcommittee. You have been a tireless advocate for 
preventing and controlling this terrible disease, and your 
father was a man who very clearly made a difference in this 
world. I think you are making a difference as well, and we very 
much appreciate your strong advocacy in bringing the dangers 
and scourge of this disease to our attention. Thank you for 
being with us.
    Mr. Javits. Thank you for your very kind words, 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.]
                              ----------                              --
--------

                                       Wednesday, January 28, 1998.

                                WITNESS

EDWARD L. SNYDER, M.D., AMERICAN ASSOCIATION OF BLOOD BANKS
    Mr. Porter. Edward L. Snyder, M.D., Director of the Blood 
Bank at Yale Medical School and Yale-New Haven Hospital in New 
Haven, Connecticut, and President of the AABB, representing the 
American Association of Blood Banks.
    Dr. Snyder.
    Dr. Snyder. Thank you. Mr. Chairman and members of the 
subcommittee, my name is Ed Snyder. I am Director of the Blood 
Bank at Yale, and the Yale-New Haven Hospital in Connecticut. I 
am testifying today as President of the American Association of 
Blood Banks in support of increased funding for NIH and NHLBI.
    The AABB is a professional society for 8,500 individuals 
involved in blood banking and transfusion. We represent 2,200 
institutional members, including community and Red Cross blood 
centers, and hospital blood banks that collect, process, and 
transfuse blood. Our members are responsible for virtually 
collecting all of the blood in the United States, and more than 
80 percent of the blood transfused.
    Throughout its 50-year history, the AABB's highest priority 
has been to maintain and enhance the safety of the blood 
supply. NHLBI is currently sponsoring several important 
transfusion medicine projects. There are, however, important 
opportunities in this field that require additional 
investigation to assure the safest possible blood supply.
    I would like to emphasize five of these. First is detection 
of transfusion-transmitted disease. Despite the great progress 
that has been made in selection of donors who are at low risk 
for disease transmission and the use of and improvements to 
tests to eliminate infected donors, prevention of AIDS and 
other transfusion infections remains a top priority of 
transfusion researchers and all recipients of blood.
    Each improvement to testing has led to a decrease in the 
window period, the period of time between infection with a 
viral disease and the ability to detect the virus by a 
screening. The risk of acquiring viral disease through 
transfusion is lower than ever, yet worldwide travel and 
demographics could spread new viruses, bacteria, and parasites 
into the U.S. blood supply. I call your attention to the 
concern about the spread of CJK or mad cow disease into the 
blood supply in the United Kingdom. Prevention of transfusion-
transmitted disease remains a priority of transfusion research.
    Secondly is the role of biologic response modifiers in 
transfusion reactions. Studies have identified several 
substances released by human cells which play a role in 
changing the patient's response to transfusion. These adverse 
responses, known as transfusion reactions, range from fever and 
chills to severe allergic reaction, shock, and even death. 
Studies on the role of these chemicals and adverse reactions to 
transfusion and research into how to modify and control them is 
now necessary.
    Third is the immunology of transfusion. Even though blood 
transfusion is a lifesaving therapy, transfused components are 
still recognized as a foreign substance by the human body. 
Blood transfusion can produce adverse changes in the body's 
immune system. This includes decreasing the natural defense of 
the patient for their fight againstbacterial infection, or by 
decreasing their ability to prevent cancer recurrence. Lifesaving 
transfused blood may thus actually promote disease. Bone marrow 
transplant patients, cancer patients, and other immunosuppressed 
recipients are all at risk for immunologic complications. Fundamental 
basic research is needed to gain knowledge on how to combat these 
aspects of transfusion.
    Fourth is stem cell research. The AABB is pleased that 
NHLBI is funding a 5-year study of transplanting stem cells 
collected from cord blood. Stem cells may become the ultimate 
vehicle for curing diseases through gene therapy. This 
initiative, however, poses new questions, and we support 
additional research in this area.
    Lastly, transfusion medicine, research training, and its 
clinical infrastructure needs further evaluation. Our 
infrastructure is currently nonexistent. We support development 
of linked centers of transfusion excellence for research and 
training. Such centers could provide a critical mass of 
resources needed to accomplish NHLBI-sponsored research in 
transfusion medicine.
    The American Association of Blood Banks endorses a 15 
percent increase in NIH funding for fiscal year 1999 as a first 
step towards doubling the goal of NIH--doubling the NIH budget 
over the next 5 years. This recommendation is consistent with 
congressional support for doubling the amount authorized for 
basic science and medical research for a number of research 
agencies, including NIH. This level of funding would also 
sustain the rate of growth NIH has experienced in the past 
decade.
    Mr. Chairman and subcommittee members, on behalf of the 
many NHLBI-funded transfusion scientists, thousands of health 
care professionals, and millions of transfusion recipients, we 
appreciate the opportunity to discuss Federal support for 
research and transfusion medicine before the subcommittee. 
Thank you.
    [The prepared statement of Edward Snyder, M.D., follows:]


[Pages 141 - 155--The official Committee record contains additional material here.]



    Mr. Porter. Dr. Snyder, can I ask a question? The best way 
to avoid the transmission of diseases through transfusion is 
for an individual to have their own blood preserved; is that 
not correct?
    Dr. Snyder. The best way to avoid it is to avoid the 
transfusion.
    Mr. Porter. But if you have to have one, have your own 
blood supply?
    Dr. Snyder. You are absolutely right.
    Mr. Porter. How long does blood last if someone were to 
provide their own blood in sufficient quantity? How long could 
you keep it?
    Dr. Snyder. In the liquid state, it can be stored up to 42 
days. Frozen, it can be stored up to 10 years.
    Mr. Porter. Ten years?
    Dr. Snyder. Ten years, frozen.
    Mr. Porter. In the frozen state, is it usable in most cases 
of transfusion?
    Dr. Snyder. Yes. The red cells you can freeze. It is a 
fairly complex issue. If you need platelets which help blood 
clotting, that cannot be frozen in most cases. It can in some 
special situations. Plasma can be frozen for up to a year. Red 
cells can be frozen for 10 years.
    Mr. Porter. Are they the most significant in transfusions?
    Dr. Snyder. It depends on the illness. If someone has 
cancer, they may need platelets more than red cells. There is 
no easy answer.
    Mr. Porter. If you could, by law, require people to put 
aside at a certain age so much of their own blood, that might 
help a great deal in providing blood for transfusions if they 
need them, and also to prevent the transmission of diseases 
through transfusions; correct?
    Dr. Snyder. The Association certainly recommends that 
people donate their own blood for their own use wherever 
possible, and also those who are healthy enough and pass the 
required screening tests, donate for the general blood supply. 
We don't have enough blood donors to keep the Nation's blood 
needs kept going.
    Mr. Porter. Sometimes I think that people just need to be 
encouraged to do things that they would naturally want to do 
but don't have enough push to do it. I have also thought if we 
could simply tell people that when they reach Medicare 
eligibility, they have to make a decision. They don't have to 
do it, but they have to make a decision whether they want to 
leave a living will or not. They have to make a conscious 
choice as to whether they want heroic measures applied if they 
become what a doctor would determine as terminally ill.
    I think most people would do that without any problem. I 
don't think they would have any problem with it. Some would 
decide they don't want to make a living will and would want the 
procedures, but most I think would say, no, not at that point. 
We will trust medical judgment and allow them to make the 
decision for us.
    It seems to me that maybe perhaps if at the same time we 
said, wouldn't it be a good idea to put aside some of your own 
blood if it is needed, we might accomplish a great deal in a 
very practical way, without any kind of intrusion on people's 
rights.
    Dr. Snyder. Certainly using such blood for that same 
individual would be reasonable. The concerns that are shared by 
the members of the community and the FDA would be if people 
were asked to donate blood for other people, with a similar 
sense of urgency, because of the concern over the accurate 
receipt of the blood donors' screening, that people are not 
donating for reasons other than altruism, because of the 
studies that have shown that when people are asked to donate 
and are urged to donate perhaps a little too much, that they 
may not be 100 percent truthful in the donor history.
    It is a very complicated issue. But for autologous, as you 
appropriately point out, it would be reasonable to encourage 
people to donate their own blood for surgery that is planned.
    Mr. Porter. Thank you, Dr. Snyder. I have taken much more 
time than I should, but I am interested, obviously, in the 
subject.
    Dr. Snyder. Thank you very much.
                              ----------                              --
--------

                                       Wednesday, January 28, 1998.

                                WITNESS

ALAN G. KRAUT, Ph.D., AMERICAN PSYCHOLOGICAL SOCIETY
    Mr. Porter. Allen G. Kraut Ph.D., Executive Director of the 
American Psychological Society.
    Mr. Kraut. Mr. Chairman, I am delighted to be here on 
behalf of the members of the American Psychological Society, 
many of whom receive NIH grants for such topics as brain 
behavior, addiction research, human development, aging, mental 
illness, hearing and vision research and chronic pain, to name 
just a few.
    I ask that my written statement be entered into the record 
and I will just summarize here.
    Let me begin by expressing our sincere thanks for the 
increase you have already given NIH, and to say that we will 
work hard with you, including visiting the Committee on the 
Budget, to double the NIH budget over the next 5 years.
    As part of the Ad Hoc Group for Medical Research Funding, 
we are asking for a 15 percent increase in NIH as a first step 
towards that goal. But can NIH absorb this increase so quickly? 
I know that behavioral research stands ready. We are poised, 
both in terms of the role behavior plays in serious health 
problems and in the field's capacity to proceed in many 
important directions.
    Last fall, Mr. Chairman, during your hearings on the mind, 
body, and health, we were all encouraged to hear you talk about 
finding ways to open the door to increase NIH's receptiveness 
to behavioral science research. Let me suggest that one way 
would be to make this open door theme a standard part of your 
conversations with Institute directors as they appear here in 
front of you. We think that even a single consistent question 
from you, such as can you tell me how you might be encouraging 
behavioral research in your Institute, would send this 
important message.
    Increasing NIH's receptiveness is my main concern today. 
Some of our Nation's most critical health questions involve 
behavior: What goes on in the thinking of young people that 
leads them to start drinking, smoking, taking drugs? When do we 
acquire patterns of behavior that may be with us for the rest 
of our lives? What about connections between stress and health? 
How does genetics interact with behavior? What can we do to 
help memory as we age?
    There are many others, but NIH resistance to the science 
that addresses these kinds of questions continues, despite 
recommendations from you, the National Academy of Sciences, 
even from its own Institutes. One example is how NIH responded, 
or rather didn't respond to recommendations from the National 
Academy of Sciences to increase training for behavioral 
scientists specifically through national research service 
awards.
    In a congressionally mandated assessment of training needs, 
the National Academy said that the size of NIH stipends should 
be increased and that the number of awards for behavioral 
science and for several other areas also should be increased. 
Since 1995, this committee and the Senate committee have been 
asking NIH to implement those recommendations, and after a 3-
year delay in responding, the NIH now says the amount of money 
awarded in the NIH stipend will be increased but not the number 
of awards in behavioral science or in other areas. NIH cites 
budget concerns for this selective implementation, saying that 
neither National Academy members nor Congress ``fully 
appreciated the costs.''
    What are the costs? The National Academy's behavioral 
science recommendation to add fewer than 400 trainees would add 
about $4 million to the NIH budget, spread over 3 years and 
across all the Institutes. The cost clearly is not the concern 
here. So once again we ask the committee to encourage NIH to 
increase the number of their research service awards.
    I should note that several Institutes have their own 
recognized needs for more behavioral researchers. With 
encouragement from this committee and from the Senate they have 
developed small grants called BStart that are awarded to new 
Ph.Ds in behavioral science. We ask you to continue to 
encourage the use of BStart throughout NIH.
    NIH now has an Office of Behavioral and Social Sciences 
Research. That is the logical place to take a lead on these 
training objectives and on cross-cutting behavioral research 
priorities. But OBSSR's budget is tiny, only $2.6 million. We 
ask that that budget be increased, even to approach $20 
million. We are in an era of exceptional promise in behavioral 
science, but we need a more encouraging Federal environment in 
order to realize its potential.
    In my written statement, I have asked for your support for 
the behavioral science initiatives that are taking place in 
several individual Institutes. But despite this activity, NIH 
still needs to recognize that behavioral science is a core 
element in its mission of research and public health.
    This committee has shown extraordinary largesse in the 
annual NIH budget and we are very grateful for that support. 
Now we are asking you to encourage NIH leadership to take 
meaningful steps to ensure that the health of the Nation 
receives the full benefit. Thank you.
    [The prepared statment of Alan Kraut follows:]


[Pages 159 - 170--The official Committee record contains additional material here.]



    Mr. Porter. Mr. Kraut, thank you for your excellent 
statement. I have to say that obviously I agree with where you 
want to go. The process by which the Congress interacts with 
NIH and attempts to put its opinion into their thinking is a 
very complex and subtle. We do not feel that it is up to us to 
tell NIH what to do. They are scientists and we are not.
    We do have matters that we are very concerned with 
personally, and that we encourage them to address. The hearings 
or briefings that we had on the mind and its role in health and 
healing was meant to convey a message to them that this is an 
area that we think has been neglected in a broad sense, and to 
encourage them to be more responsive. So we will continue to 
press on that process without the heavy hand of direction. We 
will have to see what comes of that, but it is something that 
is part of a much broader process.
    We realize also that NIH doesn't exist in a political 
vacuum within the scientific community either, and that 
scientists are at all times attempting to influence the 
directions of NIH and the priorities that NIH undertakes. So it 
becomes an even broader process where we all kind of impact 
this great institution that we all admire and respect and try 
to move it a little bit in the direction that we think it ought 
to go. We appreciate very much your testimony, again, and thank 
you for being with us. We will do our best to be responsive.
                              ----------                              --
--------

                                       Wednesday, January 28, 1998.

                                WITNESS

KAREN MURRAY, COALITION FOR HERITABLE DISORDERS OF CONNECTIVE TISSUE
    Mr. Porter.  Karen Murray, member, National Marfan 
Foundation and Chair, National Marfan Foundation's Have-A-Heart 
Campaign, testifying in behalf of the Coalition for Heritable 
Disorders of Connective Tissue.
    Mrs. Murray. Good morning, Mr. Porter. I am Karen Murray, a 
member of the National Marfan Foundation, member organization 
of the Coalition, which represents more than one-half million 
Americans affected by heritable disorders of the connective 
tissue. Marfan's syndrome is one of 200 such disorders which 
include names most of us have never heard of unless or until a 
family member is diagnosed with one.
    My son Michael was born August 13, 1991, 6 years ago, in 
one of the top hospitals in New York City. He was born with a 
dislocated hip, long fingers bent backwards at the knuckle, and 
an indented chest bone. I overheard the physicians discussing 
among themselves, but not directly with me, the possibility of 
Marfan syndrome. They sent Michael and me for echocardiograms, 
which are scans of the heart, pronounced us fine, and released 
us from the hospital.
    The same doctors continued to follow Michael for the next 5 
years, during which time he grew faster, longer, taller, and 
more awkwardly than all of his peers, and his indented chest 
became more pronounced. I went to all kinds of specialists, all 
but a cardiologist. I would constantly describe Michael's 
symptoms: Why is he so tall, thin, awkward, loose ligamented, 
with an indented chest, long fingers, arms, and legs? I was 
told to let it go, he is a beautiful, healthy child. But I knew 
there was something wrong.
    For Michael's fifth birthday, I bought him an Apple 
computer which came with a free CD ROM called the Family 
Doctor. Late one night, when he was sleeping, I clicked into 
it. As I read the first paragraph under Marfan syndrome, I 
recognized the word Marfan syndrome; children with Marfan 
syndrome grow taller than their peers. They have indented or 
protruded chest bones. Fingers are disproportionately long, 
excessive joint mobility, muscle weakness, and so on.
    The very next morning, after not sleeping, I brought him 
back to the same prominent New York City hospital where he was 
born and 5 hours later, after demanding an echocardiogram, my 
diagnosis was confirmed. Michael's aorta was indeed dilated and 
he did indeed have Marfan's syndrome.
    Marfan's syndrome is a genetic disorder that affects the 
connective tissue throughout the body. In almost all cases it 
affects the heart and the aorta. Over 500,000 Americans are 
affected by Marfan's syndrome and related connective tissue 
disorders. At the time of Michael's diagnosis his aorta was 
already dilated. Severe dilation can lead to dissection, which 
is what we know as an aneurysm.
    If medical personnel can't recognize the signs, the outcome 
is usually fatal. My point is this. Doctors at the best 
hospital in New York City, extremely aware of Marfan's syndrome 
and who suspected Marfan's syndrome at birth, failed to make 
the diagnosis. In the hands of the best medical personnel in 
New York City, my son Michael slipped away. Had I not heard the 
word Marfan or bought him a computer, Michael would have been 
another statistic in his teens.
    But it doesn't have to be that way. Although Marfan's 
syndrome is incurable and a progressive disorder--which is 
difficult for me to say those words--it is diagnoseable and 
treatable. So I have hope. As a parent of a 6-year-old Marfan 
child, I am nervous but optimistic that Michael will be okay. I 
now know to have his heart monitored every 3 months. I have him 
on medication in the hope that his aorta will be less stressed.
    I live daily with the fear of when or how often will 
Michael's aorta dissect. Marfan's syndrome also affects all 
tissue throughout the body and presents orthopedic problems 
such as loose joints, scoliosis, elongated, uneven bones in the 
ribs, chest wall, spine, hips and legs. I cannot express as a 
mother the concern and the amount of questions I have.
    There is still so much I don't know, and I am often told, I 
am sorry, we haven't researched that yet, especially not in 
children. Most children who go undiagnosed and untreated die at 
a young age. Today, tens of thousands of children go 
undiagnosed. Before Michael was born I never heard the word 
Marfan. I never thought about connective tissue.
    Now there is not a night that I don't fall asleep without 
wondering or worrying about the fact that I am giving my son 
calcium channel blockers every single day in the hope it is 
helping his aorta, but what are the side effects after years of 
calcium channel blockers? No one can tell me. I keep asking if 
calcium channel blockers are okay for children. They don't 
know. There is no research.
    Can and should Michael exercise at all? Can he take a 
regular gym class? They don't know what to tell me. What is 
more effective, surgery or a brace for his scoliosis? Do 
children with Marfan syndrome have weak tissues in their 
respiratory system? Is that why my son also has asthma, since 
it is not in my family? Why do Marfans' lungs collapse? Since 
Michael has so many orthopedic issues, what can I do to help 
him live a life of less chronic pain? I am scared to have 
another baby, but I would love to. Are there tests I can take 
to determine the health of the fetus?
    Research is needed in all of these areas. It is essential. 
Undiagnosed Marfan patients end up in the emergency room. The 
emergency room staff does not know what to look for and most 
Marfan patients die. I am fortunate that I at least know that 
he is diagnosed. The key is to build awareness and educate the 
medical community, fromOB-GYNs to pediatricians to emergency 
room doctors, so they can recognize and diagnose Marfan's syndrome. 
Early diagnosis and careful daily management is critical in order to 
preserve and enhance the life of a Marfan patient.
    Similar challenges are faced by other heritable disorders 
of connective issues. The advances in genetic research today 
bring hope to the one-half million individuals affected with 
these disorders. Yet more dollars are needed. The Coalition 
supports the proposal of the Ad Hoc Group for Medical Research 
Funding, which calls for a 15 percent increase in funding for 
the NIH in 1999 with a view towards doubling the budget over 
the next 5 years. Please help fund these important programs so 
we can learn more about how to care for Michael and so the 
medical community is more aware of Marfan syndrome and 
heritable disorders of connective tissues, so that lives can be 
saved. Thank you.
    [The prepared statement of Karen Murray follows:]


[Pages 174 - 181--The official Committee record contains additional material here.]



    Mr. Porter. Mrs. Murray, I can't think of a more compelling 
case for providing resources for both research and helping the 
medical community understand and diagnose this disease. We very 
much appreciate your testimony.
    I think Marfan's only came to the attention of the American 
people recently, in respect to Abraham Lincoln. There was some 
thought that perhaps he was a victim of that disease. I think 
they even were going to--and I can't remember the outcome--look 
at the bone, the DNA.
    Ms. Murray. They still are. It is suspected that he had 
Marfan's syndrome, along with Chris Patton and lots of other 
famous people. They suspect John Larsen, the director and 
writer of Rent, and lots of other famous people.
    Mr. Porter. The fact that famous people may have such a 
disease very frankly often helps the American public to 
understand the disease better. It gets their attention. I often 
tell--we have a lot of celebrities come and testify before this 
subcommittee regarding various diseases, and I think that helps 
a great deal for people to understand the disease, and gets 
them focused on the fact that even famous people suffer from 
these diseases, and that I think helps build us a support base 
for the research that we need to address them.
    Ms. Murray. And more awareness.
    Mr. Porter. Thank you for coming to testify. I really 
appreciate that.
                              ----------                              --
--------

                                       Wednesday, January 28, 1998.

                                WITNESS

DEBORAH KLEIN WALKER, ASSOCIATION OF MATERNAL AND CHILD HEALTH PROGRAMS
    Mr. Porter. Deborah Klein Walker, Ed.D, President, the 
Association of Maternal and Child Health Programs, testifying 
on behalf of the association.
    Dr. Walker. Thank you. I am Deborah Walker, President of 
the Association of Maternal and Child Health Programs. In 
Massachusetts, I serve as the Assistant Commissioner of Family 
and Community Health within the State Health Department. Thank 
you very much for the opportunity for us to appear before you 
today.
    On behalf of the Association, I appreciate the 
subcommittee's support of the maternal and child health 
services block grant. The block grant forms the essential 
framework on which States have built and maintain their systems 
of care for women, children and youth.
    For over 60 years the MCH programs have helped to reduce 
maternal and infant mortality, improve the health of newborns 
by preventing life-threatening diseases, improve the health 
status of school-aged children, prevent adolescent pregnancy 
and other at-risk adolescent behaviors, and assist children 
with special health care needs.
    State MCH programs carry out core public health prevention 
activities, as well as provide direct services for women and 
children who lack the necessary health care. Investments in 
public health, including MCH services, is cost-effective and 
results in improved health outcomes.
    For example, newborn screening prevents chronic diseases 
and disabilities through early detection, diagnosis, and 
treatment of disorders. In Illinois, 99 percent of all newborns 
are screened for at least 6 disorders, including sickle cell 
anemia. Tobacco use, exposure to environmental tobacco smoke, 
poses exceptional and immediate risk to pregnant women and 
children. In 1995, the estimated costs of birth complications 
attributed to smoking were conservatively estimated at $1 
billion. State MCH programs have worked in partnership with 
community-based groups and the private sector to prevent and 
end nicotine addiction.
    I would like to also add, you have heard a lot about a very 
important research, but it takes an infrastructure to get the 
results of this research to the public at the lay level in the 
community. The MCH block grant is such a vehicle. MCH funds 
have supported major campaigns like the ``Back to Sleep 
Campaign,'' which has drastically brought down deaths due to 
SIDS, and is also funding campaigns on the importance of folic 
acid for pregnant women, so that spina bifida will be 
prevented.
    In addition to these public health prevention strategies, 
the MCH block grant directly serves over 17 million women and 
children, including almost 1 million children with special 
health care needs. The health of our Nation's pregnant women 
and children has improved dramatically over the 50 years.
    Through advancements in medical technology and improved 
access to care, we have seen significant reduction in many 
adverse health outcomes. However, many things still fall short 
of where we want to be, especially in our underserved and 
minority populations. For example, in the last 15 years, infant 
mortality for both whites and blacks has decreased 
considerably, but the gap between whites and blacks has 
actually increased. Smoking rates for adolescents are going up, 
injuries remain the leading cause of death for children and 
women, and infants are at an increased risk for things like HIV 
and AIDS.
    Last year, and we want to compliment you, Congress took 
significant steps to address some of these problems through 
passage of the State children's health insurance program. This 
health coverage expansion presents States with tremendous 
opportunities. State MCH programs are very much partnering with 
State Medicaid agencies during this implementation stage to 
figure out best how to approach and spend those funds within 
each State. However, with this tremendous expansion we still 
know that not all children will be covered, and we also know 
that those who are even covered by insurance will not have all 
the necessary services they need. Therefore, the MCH block 
grant is still needed in every State.
    The congressional budget estimated that the new law 
wouldcover an estimated 3.4 million uninsured children when it is fully 
implemented. This leaves 3.6 million uninsured children still out 
there. The children's health insurance program again does not provide 
access to care, outreach and intake, services to uninsured pregnant 
women, underinsured children, especially those with special health care 
needs, comprehensive services for special health care needs, home 
visiting services, school health services, and adolescent health 
services, just to name a few.
    These are responsibilities that the MCH block grant will 
continue to address, in addition to the fact that the MCH 
programs will continue to ensure the availability of public and 
private providers in rural and underserved areas, support and 
coordinate services for children with special health care 
needs, and get pregnant women and children into these health 
insurance programs, and get them signed up so they will receive 
the benefit of the program.
    Mr. Chairman, our Nation is making strides in the health 
status of women, infants, children, youth and their families, 
but we still have a long way to go. Through wise investment in 
the maternal and child health services block grant we can see 
further improvements in the health of mother and children. This 
MCH block grant is a flexible block grant to States. States 
have used it successfully to develop local systems of care 
which have addressed these issues.
    The MCH block grant is in fact the point of accountability 
for the entire MCH population in each State. For these and 
other reasons, the association recommends a funding level of 
$705 million, only a 3 percent increase over the last year. 
With sufficient funding, the maternal and child health services 
block grant will continue to play a vital role in improving the 
health status of all children and pregnant women in every 
community in every State of this Nation. Thank you.
    [The prepared statement of Deborah Walker follows:]


[Pages 185 - 192--The official Committee record contains additional material here.]



    Mr. Porter. Dr. Walker, that was a very articulate 
statement. We will, as you know--in a certain sense you are 
preaching to the choir, but we will do our very best to meet 
that goal.
    Dr. Walker. Thank you very much.
    Mr. Porter. Thank you for coming to testify.
    [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.]
                              ----------                              --
--------

                                       Wednesday, January 28, 1998.

                                WITNESS

ROGER BURNS, PRIVATE CITIZEN, HIMSELF
    Mr. Porter. Roger Burns, a private citizen testifying on 
his own behalf. It is unusual, and we welcome you.
    Mr. Burns. Thank you, sir.
    Mr. Chairman, my name is Roger Burns. I publish a widely 
read newsletter with a readership of over 10,000 on the topic 
of chronic fatigue syndrome. I am also a leader in the effort 
to change the name of this illness. I will today make some 
recommendations to you about the name change issue which has 
been a policy interest of your committee.
    As you are aware, there is a strong stigma associated with 
the name chronic fatigue syndrome. Outdated science reports 
have in the past prompted misinformed notions of ``it is all in 
their minds,'' et cetera, on the part of the public, employers, 
disability insurers, and by all too many medical professionals, 
despite recent scientific research that underscores the 
seriousness of this disease.
    This stigma adds a great deal to the disruption of the 
patient's lives, often obstructing the delivery of needed 
medical care, interfering with the ability to collect merit 
insurance claims and obstructing family life. Sadly, the 
scientific knowledge that has been accumulated, which does 
validate this emerging illness, has been disseminating very 
slowly to the general medical community and to the public.
    I issued a survey last year to CFS patients about the 
change-the-name issue, which was graciously co-published by the 
CFIDS Association of America. The results from 668 respondents 
showed that over 90 percent of those respondingwant the current 
name to be replaced, and that many specific alternatives were deemed 
suitable to overcome the stigma of the current name.
    Many CFS patients are grateful that your committee's report 
for fiscal year 1997 asked the HHS Secretary to, and I quote, 
``convene a committee for the purpose of examining the name 
change issue, and to report back within 6 months of the bill's 
enactment with recommendations for a new scientific name or 
eponym that more appropriately describes the illness known as 
chronic fatigue syndrome.''
    Those scientists who are the most familiar with CFS do say 
openly at their medical conferences that they now know that 
this is a serious illness. But this current state of knowledge 
is not yet widely understood by most doctors. What better 
vehicle could there be to help eradicate the stigma of CFS than 
for the Department of HHS to hold a press conference to declare 
that, ``We now know, given a decade of accumulated evidence, 
that CFS can be a very serious illness, and to underscore our 
new knowledge, we are changing the name of this illness''?
    To fulfill the request of this Appropriations Committee, 
the HHS Secretary delegated the name-change issue to her CFS 
coordinating committee, which, however, voted at its October 2, 
1997 meeting to postpone indefinitely any change of name until 
such time as more scientific evidence might appear to justify 
the choosing of a wholly new physiologic-based name. That 
committee then disbanded its working group on this topic.
    The CFS coordinating committee's public discussion gave 
little attention to the already-established alternative names 
already used in scientific literature for referring to this 
illness, nor to the possibility that an eponym might be chosen. 
In short, the most difficult option was focused on. The 
committee did not discuss--the coordinating committee did not 
discuss the stigma of the current name and its burden on the 
patients, which was the original reason for calling for a 
change in name. In addition, public testimony was excluded 
until the end of the meeting, when the decision to suspend the 
name-change issue had already been made.
    I believe there are two reasons why the CFS coordinating 
committee suspended the name-change issue. One, there was no 
permanent Assistant Secretary for Health during 1997, when the 
coordinating committee took up this issue. The Assistant 
Secretary for Health chairs the CFS coordinating committee. 
Therefore, there was not sufficient leadership within that 
committee to ensure that the name change was given a complete 
hearing.
    Two, none of the scientists who serve on the CFS 
coordinating committee can afford, as individuals, to recommend 
a specific alternative name. These scientists are already 
putting their careers at great risk by focusing their research 
on CFS. They could be throwing away their careers by becoming 
any more prominent in this field than they already are. That is 
right, scientists who study CFS are stigmatized by other 
scientists.
    With these facts in mind, I recommend the following steps 
to the Appropriations Committee: A, when the new Assistant 
Secretary for Health is in place, it will be very important to 
sensitize that official to the needs of the CFS community and 
about the name change/stigma issue in particular.
    The only way to make deliberate progress in legitimizing 
this disease is to have leadership from some official who has 
the respect of the research community, but who is also 
independent enough that their personal career does not depend 
on getting published as a researcher. The ideal official for 
this task would be the Assistant Secretary for Health. Please 
help to motivate and sensitize the new Assistant Secretary when 
you discuss HHS matter with him in his appearance before this 
committee later this year. For our part, those of us in the CFS 
community will work to educate the new Assistant Secretary 
about these issues in detail.
    I have one further point to make. The CFS coordinating 
committee is truly incapable of recommending any alternative 
name in the foreseeable future because that committee is 
comprised largely of government bureaucrats and vulnerable 
researchers, none of whom can afford to recommend anything that 
might be perceived as too innovative in this politicized field, 
even merely changing the name of the illness.
    Yet some participation by scientists will be essential in 
giving credibility to the recommendations of a name-change 
panel. Therefore, it would be most helpful if the 
Appropriations Committee were to renew its call for a new name 
or eponym, and to ask the HHS Secretary to appoint a 
``committee or workshop or a forum'' that would include not 
only scientists but also general practitioners of medicine, and 
patients who are advocating a change of name for the illness.
    I thank you for your attention.
    [The prepared statement of Mr. Roger Burns follows:]


[Pages 196 - 198--The official Committee record contains additional material here.]



    Mr. Porter. Mr. Burns, I am not sure you are aware of this, 
but this whole issue was one that I began working on when I 
first began as a member of this subcommittee because a 
constituent of mine came to me and said his daughter had this 
health problem that the medical community was not recognizing 
for what it was, and we began then pressing on NIH, through 
language in our bill and later on with direction, to conduct 
research.
    At the time it was called Epstein-Barr syndrome. No one 
wanted to take it seriously, and by pressing on the process a 
great deal, they began to do some work and found out that it 
was in fact a serious disease. So I am very interested in what 
you are telling me. We will continue to press on this process 
to try to get a decision.
    Now, tell me why chronic fatigue syndrome is not a 
description that you want to stick with.
    Mr. Burns. A couple of reasons. One is that there was a lot 
of brouhaha in years past about CFS not being real, about it 
just being depression, et cetera. That has glommed onto the 
current name.
    It can glom on easily to the current name, because although 
fatigue has a broad connotation in the field of science, in 
everyday language, fatigue just means mildly tired. So the 
technical scientists would say that, well, it is an appropriate 
name if you look it up in a medical dictionary, but it is so 
easy to----
    Mr. Porter. Not taken seriously, as it should be?
    Mr. Burns. Yes.
    Mr. Porter. One of the reporters that had covered Congress 
from my district, but here in Washington for years suffered 
from this disease, was given six months medical leave to try to 
cope with it, and ended up finally retiring, because he 
couldn't cope with it. So it is, in my mind, a very serious 
disease that afflicts many, many Americans. Many are unaware 
that that is what is afflicting them.
    As I say, we take it seriously here and we will do 
everything we can to move this process along and work with you 
on it.
    Mr. Burns. Yes. Thank you very much.
    Mr. Porter. Thank you for your testimony.
                              ----------                              

                                       Wednesday, January 28, 1998.

                                WITNESS

GERALD J. CHADER, Ph.D., M.D.h.c., NATIONAL ALLIANCE FOR EYE AND VISION 
    RESEARCH
    Mr. Porter. Gerald J. Chader, Ph.D., M.D., Chief Scientific 
Officer, Foundation Fighting Blindness, representing the 
National Alliance for Eye and Vision Research.
    Good afternoon.
    Dr. Chader. Mr. Chairman, for the last year I have been the 
chief scientific officer of the Foundation Fighting Blindness. 
It is based in Baltimore. It is a nonprofit foundation funding 
basic research and clinical research to blinding diseases. 
Before that I did about 25 years of research in ophthalmology 
at Harvard and at the National Eye Institute in Bethesda.
    Today, I actually represent the Association for Research in 
Vision and Ophthalmology, which is an association of 10,000 
members of all the leading scientists and clinicians doing 
ophthalmic work. In turn, ARVO and my foundation are part of 
the National Alliance of Eye and Vision Research, which is an 
umbrella organization representing 28 professional lay advocacy 
and industry organizations dedicated to curing blindness. So we 
are all in this together.
    Thanks to your support over the last 25 years, a solid 
basis of work funded by the National Eye Institute has put us 
on the verge of truly spectacular increases and advances in 
treatments and cures of several major eye diseases.
    In the very short amount of time I have, I simply want to 
tell you three things. First of all, the magnitude of the 
problem of blindness; secondly, that indeed, we do have a 
superb, long-range plan. It pinpoints the very best 
opportunities in curing blinding diseases, as well as 
addressing the economic and societal impact of blindness and 
impaired vision. Third, I want to give you just one example of 
an area where new funding can have a huge impact in the next 
year or two.
    First of all, what about the magnitude of the problem? In 
the United States today, with over 1 million legally blind 
Americans, 80 million Americans have potentially blinding eye 
diseases, 120 million Americans wear glasses or contact lenses, 
and a full 12 million suffer from visual impairment that can't 
be corrected by glasses.
    Let me say that I am not wearing glasses, so this is not a 
normal situation with aging, and I do see that you use yours 
very sparingly. So this is a disease process that has a major 
impact.
    Mr. Porter. No, sir, I am wearing contact lenses, with one 
reading lens. This is additional.
    Dr. Chader. I may be the exception to the rule, but I don't 
wear glasses, but it is a pathological process. It is not 
normal with aging.
    The economic and societal impact of these figures is 
staggering. The annual cost of these disorders is in excess of 
$38 million. Of course, the societal impact, for example, the 
basic quality of life, that is incalculable, particularly in 
our fragile aging population, where good vision is a necessity 
for independent living, and certainly for self-dignity.
    The second question, do we have a plan, certainly. On this 
issue, I would like you to very closely examine the Eye 
Institute's national plan for the years 1999 through 2003. This 
is the 7th such plan that the Eye Institute has put together 
where all the stakeholders in the eye community have input. I 
have looked at it twice already and given my best shot as such. 
Basic scientists, clinicians, and all researchers have a word 
in this. The answer to this question then is a resounding yes. 
We certainly do have a plan. It is cogent, practical, 
practicable, and definitely will deliver a huge payoff in the 
next few years if properly funded.
    Finally, I would like to give you one example of a major 
blinding condition where we do and perhaps can have a morning 
impact. That is with macular degeneration. MD, macular 
degeneration, is a disease that destroys a person's central 
vision by killing off what is called the macular region of the 
neural retina.
    If you put a fist up close to your eye and then try to look 
out the periphery, that is what patients see or don't see with 
macular degeneration. Then slowly the rest of the eye goes as 
well. The total number of Americans with macular degeneration 
runs into the millions, and fully one-third of all Americans 
over the age of 75 show some signs of macular degeneration.
    This is a problem now of epidemic proportion as our 
population ages and as our baby-boomers mature. Statistics show 
that macular degeneration does increase 100-fold from the age 
of the early sixties through 80 to 84. The latter, I am sure we 
all wish to get into that group sooner or later, and don't wish 
to be blind.
    Working myself in this area of research for 24 years, I 
know for a fact that new scientific information gained just 
this last year brings us very close to treatments and cures. We 
now know that macular degeneration is found in family clusters, 
therefore probably making this a genetic disease. Six months 
ago we hardly even thought about that. Then we have a new major 
gene that has recently been found, and we have certain other 
areas of gene therapy, medical, pharmaceutical, and alternative 
therapies, where we can apply them.
    In conclusion, the magnitude of this problem, and of 
cataracts, which I have not even talked about, and of the 3 
million people with glaucoma, predicates that there are really 
wonderful advances that we are on the verge of. We have genes 
for many of these diseases now, for gene therapy and other 
types of therapies. We do hope, and we very much support, a 15 
percent increase in the overall NIH budget, and certainly the 
National Eye Institute's budget.
    I would like to stop here then and ask if you have any 
questions. Thank you.
    [The prepared statement of Gerald Chader follows:]


[Pages 202 - 213--The official Committee record contains additional material here.]



    Mr. Porter. Dr. Chader, as I said earlier, we don't 
consider these things in a vacuum. You pointed out that I have 
had poor vision for a long time. My wife's mother has retinitis 
pigmentosa, so we have another vision problem, though it is not 
as prevalent as the ones you have mentioned, and it is 
something--she is in effect legally blind. So I understand, I 
think, the importance of these research dollars, and have 
understood from the testimony of the National Eye Institute 
that real progress is being made, and more progress is possible 
if we can get the research dollars to support it.
    Dr. Chader. Absolutely. My foundation is called the 
Foundation Fighting Blindness, but 2 to 3 years ago it changed 
its name from the National Retinitis Pigmentosa Foundation to 
embrace and encompass all of the retinal degenerations, the 
millions now, with macular as well as the hundreds of thousands 
with retinitis pigmentosa.
    As its chief scientific officer, I have a canned talk as 
such, which I won't deliver, I will spare you that, but 
basically there are three major areas of research, where not 
only can we possibly stop and halt retinitis pigmentosa and all 
the macular degenerations, but actually reverse the process, 
perhaps for your mother-in-law, through implants, through 
retinal transplantation of photo receptor cells and all.
    So we hope to not only stop the progress of these diseases, 
young, middle-age, but also reverse the disease process as 
well. If you have further questions in the future, I will be 
very happy to talk with you about that.
    Mr. Porter. Thank you so much, Dr. Chader. We appreciate 
your testimony this afternoon.
                              ----------                              

                                       Wednesday, January 28, 1998.

                                WITNESS

DONALD M. PORETZ, M.D., INFECTIOUS DISEASES SOCIETY OF AMERICA
    Mr. Porter. Donald M. Poretz, Chair of the Public Policy 
Committee of the Infectious Dieseases Society of America, 
testifying on behalf of the society.
    Dr. Poretz.
    Dr. Poretz. Mr. Chairman and members of the subcommittee, I 
am Dr. Donald Poretz. I currently serve as chair of the Public 
Policy Committee of the Infectious Disease Society of America. 
Infectious disease physicians do care for patients with serious 
infections such as AIDS, meningitis, heart valve infections, 
bone and joint infections, and so on.
    Thank you for allowing us to testify today regarding fiscal 
year 1999 funding for the National Institute of Allergy and 
Infectious Diseases and the Centers for Disease Control and 
Prevention.
    Infectious diseases are the leading cause of death 
worldwide and the third leading cause of death in the United 
States. An investment of such sufficient dollars in these 
valuable programs now will pay significant dividends in the 
future to the American people by dramatically reducing health 
care costs and improving the quality of life for millions.
    We urge the subcommittee to continue to demonstrate 
leadership and foresight in this area by appropriating much-
needed funding increases in these programs for the coming 
fiscal year, in recognition of the lives and dollars that 
ultimately will be saved.
    Overall, the Society wishes to stress the importance of 
basic and clinical research conducted by NIH and NIAID in the 
area of infectious diseases, as well as the 
enormouscontribution to prevention of infectious diseases by the CDC.
    It is, of course, impossible to cite every contribution of 
these two stellar agencies in the diagnosis, treatment, 
prevention, and control of infectious diseases, but let me give 
a few examples.
    Emerging infectious diseases, as the media attests, new and 
dangerous infectious diseases continue to challenge us. These 
examples include hantavirus, Ebola virus, Lyme disease, 
reemergent tuberculosis, other drug-resistent infections, 
particularly in hospital, and the recent outbreak of H5N1 avian 
influenza virus in Hong Kong.
    The Society supports continued incremental increases in 
funding for the CDC action plan that emphasizes improved 
disease detection and response for emerging infectious 
diseases, and supports the new infectious diseases laboratory 
building at the CDC.
    AIDS research. As you know, the NIAID is making great 
headway in AIDS research by supporting research in the use of 
combination drug therapies that appear to control the disease 
better. In the United States, AIDS deaths dropped 23 percent, 
from 1995 to 1996 and new AIDS drugs declined by 6 percent, due 
in part to the use of potent antiretroviral drugs.
    As an aside, I am in private practice in northern Virginia. 
My practice has seen over 1600 HIV patients in the last 12 
years. We used to run 10 or 12 patients in the hospital at any 
given time. We now may have one patient in the hospital because 
of these new therapies. They have indeed been dramatic.
    Increased funding is necessary to continue this progress. 
Vaccine research and development. Immunization is one of the 
most cost-effective interventions in the health care field. For 
every $1 spent on immunization, 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.
    Increased funding will enable NIAID and the CDC to develop 
and deliver new and safer vaccines for many other serious 
infections, including AIDS, sexually transmitted diseases, 
streptococcal disease, tubercular infections, and so on. In 
particular, we urge consideration for special short-term grants 
for possible development of an AIDS vaccine.
    In addition, one of the most desperately needed vaccines is 
for malaria, especially since drug resistent strains of the 
parasite are spreading. Again, even in my practice we see 
several cases of malaria a year. In the Washington area people 
travel all over the world and bring back all sorts of disease.
    STD research, prevention and treatment. A recent Institute 
of Medicine report notes that of the top 10 most frequently 
reported diseases of the United States, of these, 5 are 
sexually transmitted. Approximately 12 million new cases of 
STDs occur annually. The U.S. has the highest reported rate of 
curable STDs in the developed world.
    The cost of ignoring STD treatment is enormous, estimated 
by the Institute of Medicine report to be about $10 billion a 
year. Moreover, curable STDs when left untreated continue to 
increase spread of HIV, and lead to sterility and infertility. 
Again, in my practice, you would be amazed at the number of 
young people, high school age and college age, who come for 
various sorts of infectious, various types of sexually 
transmitted diseases.
    Training and career grants, the biomedical discoveries 
being made today had their origins in the basic biomedical 
research training conducted in the past. Continued progress and 
leadership in combatting infectious diseases are directly 
related to the ability to train and retain new investigators in 
the field.
    This subcommittee is well aware of the fiscal challenges 
confronted by academic health centers. More than ever before, 
rigorous support of training grants and research and career 
development awards are essential to ensure the continuation of 
basic biomedical research necessary to yield a bounty of 
knowledge to be capitalized on tomorrow.
    The Infectious Disease Society of America very much 
appreciates the opportunity to testify regarding the importance 
of adequate appropriations for research, prevention, and 
treatment of AIDS and other infectious diseases. I would be 
glad to answer any questions if you have any.
    [The prepared statement of Dr. Donald Poretz follows:]


[Pages 217 - 223--The official Committee record contains additional material here.]



    Mr. Porter. Dr. Poretz, we appreciate your statement. When 
we first were required to make very significant cuts in the 
overall spending of the subcommittee in 1995 in order to help 
balance the budget, there were only 10 line items out of about 
800 where we were able to give increases. One, of course, was 
NIH. The other was CDC. So I think the subcommittee puts the 
entire subject of infectious diseases through public programs 
and through research at a very high priority, and we will do 
our very best to continue that commitment.
    We understand how important it is, and your testimony 
reminds us that it is very, very important work that affects so 
many lives, not only in our own country but around the world, 
that we have to provide that kind of support. We will do our 
best to do that.
    Dr. Poretz. Thank you very much.
    Mr. Porter. Thank you very much for testifying.
    [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.]
                              ----------                              

                                       Wednesday, January 28, 1998.

                                WITNESS

ORA PESCOVITZ, M.D., PUBLIC POLICY COUNCIL
    Mr. Porter. Laura Pescovitz, M.D., professor of pediatrics, 
physiology, physiology/biophysics, director of pediatric 
endocrinology and diabetology. Did I get through that? Indiana 
University, testifying on behalf of the Public Policy Council.
    Dr. Pescovitz. You did it.
    Mr. Porter. Welcome, Dr. Pescovitz.
    Dr. Pescovitz. Thank you very much, Mr. Porter. I really 
appreciate the opportunity to present testimony today on behalf 
of the pediatric research community.
    As you have already acknowledged, my name is Ora Pescovitz. 
In addition to being all those things that you have mentioned, 
I am also a member of the Scientific Advisory Committee of the 
Ad Hoc Group for Medical Research Funding.
    I am here today representing the public affairs 
coordinating body for the three major pediatric academic 
societies and research societies. Our organizations represent 
thousands of pediatric investigators whose collective goal is 
to improve the quality of life for all of America's children.
    On behalf of these organizations, and as an investigator 
myself, I am here today to speak about the importance of 
research funding for pediatrics, and also for the training of 
pediatric investigators.
    Why should we fund pediatric research? Although infants and 
children are leading healthier lives today, there are still 
many pediatric diseases that do not have a cure or for which 
treatment is inadequate. Modern therapy for relatively common 
diseases like cystic fibrosis or juvenile onset diabetes is 
cumbersome, costly, and stressful for children and their 
families.
    Although it is obvious that we want to improve the health 
of children for their own sake, it may be less obvious that 
improvements in pediatric medicine will have far-reaching 
implications on the societal and economic costs of adult 
diseases. Let me just mention one example of how a strengthened 
investment in pediatrics can benefit adults as well as 
children.
    Osteoporosis is a crippling bone disease that occurs most 
commonly in post-menopausal women. The morbidity and costs from 
osteoporosis are not incurred during childhood. Nonetheless, 
this disorder can really be considered a pediatric condition. 
This is because all of us deposit bone minerals throughout 
childhood, adolescence, and early adulthood. In fact, by the 
age of 30, we have each achieved our peak bone mass. After 
that, bone mass declines throughout the rest of adult life.
    Therefore, deficiencies in bone mass in childhood will 
predispose individuals to osteoporosis in adulthood. If we 
could improve acquisition of bone mineral during childhood, we 
might actually be able to prevent many forms of adult 
osteoporosis.
    Why should we fund pediatric investigators? As mentioned 
earlier today by Dr. Kelly, there is a growing concern among 
our academic colleagues that there is a looming crisis for the 
future of research in academic institutions and pediatric 
research in particular. Most pediatric research is performed at 
the Nation's medical schools, children's hospitals, and in the 
intramural programs of the NIH.
    As the focus of academic health centers shifts away from 
the traditional roles of research, teaching, and patient care 
to one which is predominantly patient care, we are concerned 
that the quality of training of future generations of pediatric 
medical scientists may be impaired, and this in turn could 
jeopardize the future health of our entire population.
    Now, what can we do to promote pediatric research, and also 
to preserve the training of pediatric investigators? The entire 
pediatric community applauds the ongoing commitment of 
Congress, through the leadership of this committee in 
particular, to increase NIH funding. We support all of the 
recommendations of the Ad Hoc Group for Medical Research 
Funding, but in particular, we would like to recognize your 
committee's pivotal role in making pediatric research a 
priority at the highest levels of the NIH by establishing a 
pediatric research initiative that is currently funded at $38.5 
million. We encourage you to maintain this commitment and to 
increase the funding for the pediatric research initiative to 
$50 million in 1999.
    My written testimony reflects just a few examples of the 
many ways that we believe these dollars should and can be used. 
Furthermore, we urge you to increase funding fortraining 
programs that will attract minority group students into the medical 
professions and encourage medical students to pursue careers in 
clinical and basic investigation. We want these programs to support 
young investigators and also we believe that they will enhance the 
quality of our mentors.
    In conclusion, as a pediatrician and as a researcher, I 
know firsthand that there are many important pediatric research 
opportunities that promise significant return on investment, 
not only improved health for children today, but also economic 
productivity tomorrow as our children grow into adulthood.
    Thank you for the opportunity to discuss the importance of 
pediatric research, and I would be delighted to answer any 
questions.
    [The prepared statement of Ora Hirsch Pescovitz follows:]


[Pages 227 - 234--The official Committee record contains additional material here.]



    Mr. Porter. Dr. Pescovitz, we very much appreciate your 
testimony in this morning's panel as well. I have to say that 
you and a number of other witnesses this morning have all 
mentioned the need to attract, to train, to encourage young 
investigators in respect to biomedical research, and we want to 
work very closely with you to try to continue to provide the 
resources that in fact do attract young people to scientific 
careers. That, I think, is a very, very high priority for the 
entire enterprise, so we appreciate your testimony this 
morning. Pediatric research is obviously of great significance, 
and we will continue to try to provide the kind of resources 
that can make a difference.
    Dr. Pescovitz. We greatly appreciate that.
    Mr. Porter. Thank you all for testifying. You all stayed 
within your time limits very, very well. We appreciate that. We 
stand in recess until 2 p.m.
                              ----------                              


                           Afternoon Session

                                       Wednesday, January 28, 1998.

                               WITNESSES

DR. LORNE M. MENDELL, SOCIETY FOR NEUROSCIENCE
FRANKIE TRULL
    Mr. Porter. The subcommittee will come to order. This is 
our second session of public witnesses, and as we begin the 
hearing, I want to remind witnesses of two provisions in 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 that 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 
our subcommittee staff.
    In order to accommodate as many members of the public as 
possible, we have scheduled over 20 witnesses for each session 
and are still not able to hear from all who wanted to testify. 
Overall, we will hear from over 200 witnesses in this segment 
alone. As a result, I have to enforce the rule limiting 
testimony to 5 minutes very strictly.
    Our subcommittee staff has a new device to time witnesses. 
We will time them, and we will do everything possible to stay 
within the time limit, and I would therefore ask that you keep 
this limitation in mind in consideration of the other witnesses 
that must follow you.
    With that, we begin with Dr. Lorne M. Mendell, President of 
the Society for Neuroscience and professor of the Department of 
Neurobiology and Behavioral Sciences at the State University of 
New York at Stony Brook, testifying on behalf of the Society 
for Neuroscience.
    Dr. Mendell.
    Dr. Mendell. Thank you, Mr. Chairman. My name is Dr. Lorne 
Mendell and this is my colleague, Frankie Trull. I am the 
President of the Society for Neuroscience and professor at the 
Department of Neurobiology and Behavioral Sciences at the State 
University of New York at Stony Brook. I am testifying on 
behalf of the Society for Neuroscience, the largest scientific 
organization in the world dedicated to the study of the brain 
and spinal cord, consisting of more than 28,000 basic and 
clinical neuroscience researchers.
    Mr. Chairman, we are very grateful for this opportunity to 
give our testimony, and I want to express our gratitude to this 
subcommittee and especially to you, Mr. Chairman, for the high 
priority that you have placed on continued funding for 
biomedical research at NIH. We were especially pleased, Mr. 
Chairman, by your comments late last year about providing a 
significant increase for NIH for fiscal year 1999.
    We fully support the goal of doubling the budget of NIH 
over the next 5 years, as has been advocated by many in the 
Congress.
    The field of neuroscience, only a quarter of a century old, 
has become well known to the general public through its major 
contributions to the welfare of our Nation of citizens. New 
insights and effective treatments have been developed 
forpreviously hopeless diseases. For example, current basic research 
has allowed us to understand mechanisms of pain so that various 
remedies are being developed for people who suffer from chronic pain 
due to disorders of skin, nerve and joints.
    Without adequate funding, our fight against neurological 
diseases and disorders such as Alzheimer's, Parkinson's, mental 
retardation, stroke, severe depression, schizophrenia and 
spinal cord injury, to name just a few, would suffer a serious 
setback.
    As researchers, patient advocacy groups and Members of 
Congress work together, the Nation will become more familiar 
with the progress that is occurring in our laboratories and 
will recognize that funding is still needed to expand upon what 
we already know. If we can double the budget of NIH, we can 
change some of these sad, but all too familiar, stories into 
medical success stories.
    Brain diseases affect more than 50 million Americans 
annually at costs exceeding $400 billion in direct costs for 
clinical care and in lost productivity. The more than 1,000 
disorders of the brain and nervous system result in more 
hospitalizations than any other disease group. The prevalence 
of brain disorders in the United States, together with high 
annual costs for treatment, combine to make these conditions 
the number one public health problem now confronting the 
Nation.
    Apart from improving the quality of our citizens' lives, 
the research conducted at NIH is highly cost effective. The 
estimated annual economic costs of neurological disease is 
staggering--for example, stroke at $40 billion, Alzheimer's at 
$90 billion and all mental disorders at $148 billion. My 
written testimony includes more examples.
    NIH is working on an economic analysis to be available in 
the near future that highlights even more areas of cost 
savings.
    We at the Society for Neuroscience realize the difficulty 
in finding money for biomedical research. However, results from 
basic neuroscience research are on the threshold of leading to 
important scientific breakthroughs in a number of brain 
diseases. To lose this momentum now would be detrimental to the 
health of the Nation. We feel that it is vital that the 
necessary funds are appropriated to continue to achieve the 
tremendous advances and breakthroughs that are within our 
reach. It is our hope that funding for all biomedical research 
will be increased as discoveries of one Institute carry over to 
work being done by other Institutes at NIH.
    The main goal is to increase funding overall so that 
further progress can be made in the hopes of ending these 
debilitating disorders and diseases. It is for these reasons 
that I have mentioned, and many others that you will hear in 
the days to come, that we recommend a 15 percent increase over 
fiscal year 1998 for NIH and support the proposal for the Ad 
Hoc Group for Medical Research Funding.
    Our recommendation is a first step towards doubling the NIH 
budget over the next 5 years. We recognize the difficulty in 
achieving this goal under current spending limits and encourage 
the Congress to explore all possible options to identify the 
additional resources needed to support this increase.
    In conclusion, Mr. Chairman, the Society for Neuroscience 
is grateful for this opportunity to present testimony to this 
distinguished subcommittee; and at this time, I will be pleased 
to answer any questions the Chairman or members may have.
    Thank you again, Mr. Chairman, for your continued support.
    [The prepared statement of Lorne M. Mendell follows:]


[Pages 238 - 245--The official Committee record contains additional material here.]



    Mr. Porter. Dr. Mendell, thank you for your good statement. 
Because you are our first witness of the afternoon session, you 
get my sermonette. My sermonette goes this way.
    If we have any hope of getting the kind of increase for 
funding for biomedical research or for other priorities within 
the jurisdiction of the subcommittee, we must have an 
allocation from the budget process that allows us those 
resources. The only way we achieve that is having impact on the 
budget process and achieving the levels indicated.
    The President, in his State of the Union address last 
night, proposed to ramp up spending for basic research, not 
just biomedical research, but all basic research, and he was 
talking about a 50 percent increase over 5 years instead of 100 
percent increase and his budget to provide spending--
discretionary spending in any area has about $100 billion of 
new revenues involved, all of which, in my judgment, are highly 
problematical given the proclivity of the Congress not to want 
to raise taxes of any type, even tobacco taxes, which I favor.
    So in the sense of this being a priority for the 
subcommittee, I think there is no question that it is, but the 
subcommittee needs help in the budget process in getting the 
resources we need to do what you are asking us to do. And so 
for everybody in this room who is interested in the programs 
before this subcommittee, not only biomedical research but all 
of them, that is where help is needed. That is where the 
message has to first be sent, and we can't do anything unless 
we have the resources to do it.
    That is my sermonette. Thank you for listening. Thank you 
all for listening.
    Dr. Mendell. All right. Thank you.
                              ----------                              

                                       Wednesday, January 28, 1998.

                                WITNESS

RONALD NIESING, NATIONAL COUNCIL OF SOCIAL SECURITY MANAGEMENT 
    ASSOCIATIONS, INC.
    Mr. Porter. Our next witness is Ronald Niesing, President 
of the National Council of Social Security Management 
Associations, Inc. Mr. Niesing.
    Mr. Niesing. Thank you, Chairman Porter, for the 
opportunity to present the views of the managers and 
supervisors who work in SSA's community-based field offices and 
teleservice centers across the country. Today, I will talk 
about the solvency issue facing Social Security, staffing in 
our offices, efforts to eliminate program fraud and abuse, and 
the delivery of services to our constituents.
    The mission of SSA is ``To promote the economic security of 
the Nation's people through compassionate and vigilant 
leadership in shaping and managing America's Social Security 
programs.'' The 3,200 managers and supervisors I represent want 
to share with you our vision, gained through experience working 
with the public every day, for managing the Social Security 
programs that now benefit millions of Americans.
    The Nation is beginning a new debate about the future of 
Social Security. An agency goal is to ``strengthen the 
understanding of the Social Security programs.'' An informed 
public is crucial for this debate to reach a successful 
conclusion. All Americans should feel that they have a role in 
the financial planning for their futures.
    Our members work with community leaders and organizations. 
We hear the questions and concerns expressed by your 
constituents. We are respected and involved members of our 
communities, and serve as a ready conduit for a public 
information campaign on solvency.
    You, as a committee, need to ensure that sufficient tools 
and resources are in place for us to deliver the appropriate 
information.
    SSA now faces a long-term crisis in management. Arbitrary 
goals have been established to reduce frontline managers and 
supervisors. This will crimp our ability to effectively discuss 
the future of Social Security in town halls, in classrooms, 
with local media, and with community civic groups.
    Like politics, all education is local. More people will 
hear the message on Social Security reform from local sources 
rather than from the national media.
    The Advisory Board has urged SSA to provide leadership on 
retirement planning, to work with employers and employees, and 
to strengthen the staff and promote the understanding of Social 
Security. These recommendations cannot be met while arbitrarily 
reducing managers and supervisors. In appropriating funding for 
SSA, we urge you to keep the upcoming solvency debate in mind.
    SSA's strategic plan calls for the delivery of customer- 
responsive, world-class service. Our first aim is to deliver 
the best possible service to your constituents. Yet, less than 
half of the 65,000 employees who work for SSA are serving on 
the front lines in the 1,300 field offices and teleservice 
centers. We need to move more employees to direct service 
positions, to help process new claims, handle requests for 
Social Security numbers, combat fraud and abuse, and work with 
employers to ensure proper use of Social Security numbers.
    Despite these needs, future agency staffing will cut 3,000 
more field office employees, the people who serve your 
constituents. As appropriators, we urge you to keep those needs 
in mind as you deliberate the budget for SSA. I know that 
Social Security issues are the number one cause of constituent 
contacts. Will the public be getting the best value for its tax 
dollar by cutting 3,000 more employees from local offices while 
leaving current staff in place in large headquarters complexes 
and processing centers?
    SSA has a goal of ``zero tolerance for fraud.'' This will 
be more difficult to achieve as we cut management and staff 
positions. At a minimum, we must keep all of the employees we 
now have in place in the field. If SSA is to avoid situations 
like the Georgia family, where 181 members were receiving SSI 
benefits, we need to increase our community contacts and work 
with medical providers.
    All of you have received letters and calls from 
constituents regarding lengthy delays in waiting for disability 
decisions. SSA is moving to modernize the disability process. 
We support these efforts and would like to see greater 
accountability from the Office of Hearings and Appeals in 
reducing processing times and increasing the number of 
completed hearings.
    The agency is meeting the commitments made to you and to 
this committee on its 800 number telephone service. However, 
SSA does not offer the same service to the public who call 
local offices. Almost all managers feel their offices are 
giving poor service to the calling public. This is the number 
one complaint heard in your offices. We urge you to appropriate 
sufficient funds to allow the agency to provide world-class 
telephone service to those who choose to call their local 
offices.
    The issues I have outlined are important to the American 
people. It is vital that SSA have the resources to provide 
services that Americans have paid for, deserve, and expect.
    Thank you again, Chairman Porter, for the opportunity to 
testify at this time, and I would be happy to answer any 
questions.
    [The prepared statement of Ron Neising follows:]


[Pages 249 - 255--The official Committee record contains additional material here.]



    Mr. Porter. In the course of your testimony, Mr. Niesing, 
you said, if I am correct, that less than half of the employees 
of Social Security have public contact.
    Mr. Niesing. That is correct. About 28,000 out of the 
65,000 actually work in the offices that are in our communities 
across the country.
    Mr. Porter. Can you tell me what the rest do, generally?
    Mr. Niesing. Many of them work in our headquarters complex, 
in our processing centers. They are located in seven sites 
across the country.
    Mr. Porter. Data processing?
    Mr. Niesing. Right.
    Mr. Porter. Okay. Well, we appreciate very much your 
testimony today. Obviously, this is a very important subject. 
It is the place probably where more of our citizens contact 
government than any other, and obviously we want to do the best 
we possibly can and give you the resources you need to do your 
work. Thank you for your statement.
    Mr. Niesing. Thank you
                              ----------                              

                                       Wednesday, January 28, 1998.

                                WITNESS

BRUCE M. CHRISTENSEN, AMERICAN SOCIETY OF TROPICAL MEDICINE AND HYGIENE
    Mr. Porter. Bruce M. Christensen, M.D., Chairman 
Legislative Task Force, representing the American Society of 
Tropical Medicine and Hygiene.
    Dr. Christensen.
    Dr. Christensen. Thank you.
    Mr. Chairman and members of the committee, I am Director of 
the Tropical Disease Research team at the University of 
Wisconsin, and I am appearing on behalf of the American Society 
of Tropical Medicine and Hygiene. This is a professional 
society composed of 3,500 researchers and medical practitioners 
who are devoted to addressing the global threat of infectious 
diseases. A strong U.S. research agenda on infectious diseases 
is critical at this time when the ease of travel and openness 
of trade exposes the world's population to new and reemerging 
infectious disease agents.
    Mr. Chairman, we thank you for your strong support for this 
agenda and your continuing commitment to provide funding that 
will sustain our research infrastructure in the years to come.
    You have my written testimony. What I want to try to do is 
highlight a few of the things that we feel are the most 
important concerns.
    From fiscal year 1993 through 1998 the National Institutes 
of Allergy and Infectious Diseases received 40 percent funding 
increases for their extramural programs, but the research 
management and support budget increased by only a tenth of 1 
percent. Our society is concerned that we are not providing the 
Institute with the resources necessary to manage our important 
infectious disease research programs.
    We are not arguing for large increases, but merely calling 
for responsible stewardship of the extramural programs and 
grants to ensure that we are effectively meeting the 
appropriate goals and objectives.
    The Society also applauds Dr. Varmus and Dr. Fauci for 
their leadership at home and abroad in advancing the 
multilateral initiative on malaria and for implementing the 
Institute's research plan for malaria vaccine development. 
Malaria has reemerged as one of the world's most serious 
diseases, causing approximately 500 million clinical cases and 
2 to 3 million deaths each year. The tragic thing is that the 
majority of the deaths occur in African children under the age 
of 5.
    Malaria is a complex disease and its control will require 
significant research effort. We are pleased that NIH recognizes 
this and is willing to commit significant resources towards 
solving the problem, and we urge the committee to be supportive 
as well.
    Two Institute programs have been critical in advancing our 
understanding of tropical diseases, and our Society urges the 
committee to not only continue these programs but to increase 
support for these important projects. They are, first, the 
International Collaborations in Infectious Disease Research 
grant program that supports collaborative research between U.S. 
investigators and foreign institutions in countries where these 
tropical diseases are endemic; and secondly, the Tropical 
Disease Research Unit is a domestic grant program that promotes 
the application of modern technologies to the development of 
new vaccines, drug therapies or methods for vector control of 
tropical parasitic diseases.
    The Society also appreciates the committee's support for 
funding increases in fiscal year 1999 for the CDC's emerging 
and reemerging infectious disease program. We strongly 
encourage the committee to support CDC's infrastructure, which 
include the need for new bio containment laboratories in 
Atlanta.
    The real need for this is illustrated by the recent 
outbreak of avian influenza in Hong Kong, when CDC laboratories 
actually had to reduce research on certain pathogens to make 
room for this new pathogen. Space limitations that require the 
cessation of research activity of one pathogen to make room for 
another is a dangerous situation that must be addressed 
immediately.
    As the 20th century comes to a close, I think we must 
remember that infectious disease agents have no respect for 
political or geographic boundaries, and social or economic 
status do little to ensure safety from new diseases or those 
reemerging as a consequence of drug resistance or other causes.
    I spend some of my time working with lymphatic filariasis 
in village populations on the Nile Delta, and many other 
members of our Society work in the tropics where the vast 
majority of the world population resides.
    Mr. Chairman, if we turn our backs on the health threats to 
the growing majority of people living in the poorly sanitized 
areas of this planet, I truly fear an erosion of this Nation's 
humanity and world leadership. I trust you share these 
concerns, and I want to emphasize again that we sincerely 
appreciate your past support of these activities and urge you 
to continue your efforts to double the NIH budget over the next 
5 years.
    Towards this end, we obviously, as every other group here, 
will probably recommend a 15 percent increase in the NIH budget 
for fiscal year 1999. We also request that the committee 
provide a $15 million increase for the CDC's emerging 
infectious disease activities.
    I thank you for this opportunity to talk to you.
    [The prepared statement of Bruce Christensen follows:]


[Pages 259 - 269--The official Committee record contains additional material here.]



    Mr. Porter. Dr. Christensen, just one short question.
    You said that you coordinate your efforts or work directly 
with institutions of countries in the tropics where these 
diseases are most prevalent.
    Mr. Christensen. That is the one program project grant.
    Mr. Porter. Which would be a leading country to have that 
kind of research institution, Brazil?
    Mr. Christensen. Well, there are projects that in the past 
and presently go on in Brazil, in Thailand, in Kenya, in Sudan, 
in Malawi, in Mali.
    Mr. Porter. But do they have research institutions like 
ours?
    Mr. Christensen. Yes, they do.
    Mr. Porter. In those countries?
    Mr. Christensen. I would not say they are ``like ours,'' 
and that is where there is a collaboration between U.S. 
institutions and these institutions. It benefits both ways, 
because it brings technology to them in new ways of looking at 
things, but it gives the U.S. scientists a real appreciation 
for the problems that are at hand there. That is why they are 
so critical, especially when diseases now are sort of flying 
around the globe at a pretty rapid rate.
    Mr. Porter. Thank you very much for your good testimony.
                              ----------                              

                                       Wednesday, January 28, 1998.

                               WITNESSES

ALISON RUMERY-RHODES
JUDITH S. JACOBSON, SUDDEN INFANT DEATH SYNDROME ALLIANCE
    Mr. Porter. Alison Rumery-Rhodes, Sudden Infant Death 
parent, testifying in behalf of Sudden Infant Death Syndrome 
Alliance.
    Mrs. Rumery-Rhodes. Mr. Chairman and members of the 
subcommittee, my name is Alison Rhodes, and this is my husband, 
Kenny.
    Until August of 1997, my husband, Kenny, and I felt we 
lived a charmed life. In a matter of a few hours, our lives and 
our innocence were destroyed. On April 12, 1997, I gave birth 
to a beautiful boy named Connor Andrew Rhodes. Nothing compared 
with the sheer ecstacy of holding my newborn son. Kenny and I 
felt our lives were complete.
    After 10 weeks, I returned to work and carefully selected a 
small day care facility that was run by a family. There was 
never a day I worried about the care he was receiving.
    Tuesday, August 5, started out like any other day. One of 
the images that is the most vivid and unforgettable is Connor 
sitting in his carrier and smiling as I kissed him good-bye.
    My morning was busy, as usual. After coming out of a 
meeting, my phone rang. It was Jenny from day care saying the 
words I will never forget, ``There is a problem with the baby. 
He is not breathing.''
    After that, I remember hearing myself screaming, ``Oh, my 
God.'' As I raced to the hospital, I was already making deals 
with God, ``Take me; just save my baby.''
    I can't imagine the hell my husband went through that 
morning as he reached day care. He saw the paramedics trying to 
revive Connor. He felt powerless and unable to protect his son. 
Kenny knew, even then, that Connor was gone.
    When I reached the hospital, I believed I was going to find 
Connor alive. Then I heard the words that haunt me still, ``He 
is with God now.'' I heard myself screaming louder than I ever 
knew possible.
    They took us to see our precious angel, who seemed to be 
peacefully sleeping, and I begged him, ``Just please open your 
eyes, sweetheart,'' but he never did.
    The next day, we learned that an insensitive social worker 
had the day care family interrogated at police headquarters and 
threatened to shut down the facility. I immediately called 
them, offering my support and assurances that I didn't hold 
them responsible. The community, however, was not as forgiving.
    Mr. Chairman, while a standardized Death Scene 
Investigation Protocol for SIDS was created by the Centers for 
Disease Control and Prevention, it is not implemented 
consistently. I urge the committee to ask every State to 
implement this policy. It would help to end this type of 
harassment of the grieving.
    Our pediatrician told us that Connor's death was most 
likely due to SIDS. It had never occurred to me that we would 
be one of its one-in-a-thousand victims. Little did I know that 
most SIDS babies, like Connor, appear to be perfectly healthy.
    We soon decided that we wanted to learn as much about this 
disease as we could and help find a cure. We were put in 
contact with the SIDS Alliance, who I am speaking on behalf of 
today. They helped us immensely and taught us many things.
    One infant an hour dies of SIDS. It is neither preventable 
nor predictable. It is the leading cause of death amongst 
infants one month to one year of age, and certain risk factors 
have now been identified.
    The U.S. ``Back to Sleep'' campaign led by the National 
Institute of Child Health and Human Development has resulted in 
a 38 percent decrease in SIDS, the highest reduction in infant 
mortality in 20 years. But this is not the only answer, and 
further funding is still needed to understand SIDS and discover 
a means of prevention.
    While nothing will take away the grief and emptiness my 
husband and I feel, we have made a commitment to do everything 
we can to save children at risk. Connor will not die in vain. 
We are expecting our next child in July, and while this will be 
a joyous occasion, it will never ease the pain we live with 
every day.
    On behalf of Connor and all other SIDS babies, I urge you 
to increase the fiscal year 1999 appropriation for the National 
Institute of Child Health and Human Development to 
$775,980,900, an increase of 15 percent; and a down payment on 
doubling the NIH budget. A 15 percent increase would allow 
NICHD to begin to fulfill the goal of doubling SIDS research 
over the same period of time.
    We also urge this subcommittee to continue funding for the 
SIDS Resource Center at the Health Resources and Service 
Administration and the SIDS Death Scene Protocol Initiative at 
the Centers for Disease Control.
    I thank you for your time and support and welcome any 
questions.
    [The prepared statement of Alison Rumery-Rhodes follows:]


[Pages 273 - 279--The official Committee record contains additional material here.]



    Mr. Porter. Mrs. Rhodes, what was the recent development 
that I have read about and that you alluded to that had to do 
with SIDS, and it looked like there was some real progress 
being made?
    Mrs. Rumery-Rhodes. There is definitely real progress being 
made. However, it is not the only answer. One of the risk 
factors is considered prone sleeping, but Connor is a perfect 
example, he was on his back and he still died.
    Yes, there is a tremendous amount going on, but we see the 
end.
    Mr. Porter. I read in the last few weeks somewhere that 
there was something else that had been identified as a prime 
suspect at least in SIDS.
    Mrs. Rumery-Rhodes. I am not aware of it. I don't know.
    Mr. Porter. But I could be wrong.
    Mrs. Rumery-Rhodes. Judy probably knows.
    Ms. Jacobson. I am Judy Jacobson. I am with the SIDS 
Alliance.
    There have been all sorts of risk factors that have been 
identified from time to time. The most recent study, coming out 
of New Zealand this morning, showed something about caffeine 
being linked with an increased risk for SIDS.
    We know that cigarette smoke obviously is something that 
has a definite impact. In addition to the sleeping on their 
stomachs, the other recommendation that we do make is that 
infants be kept in a smoke-free environment, that parents get 
good prenatal care and that all of the things that would impact 
a pregnancy, whether they be caffeine, nicotine or any type of 
drug or alcohol abuse would certainly be something we would 
discourage.
    Mr. Porter. It might have been caffeine that I saw, and I 
must have seen it this morning.
    Ms. Jacobson. It just came out.
    Mrs. Rumery-Rhodes. It was this morning.
    Mr. Porter. I recall reading something recently. That must 
have been it.
    I wish I could say something that would give you comfort in 
this. The only thing I can really say is that Dr. Alexander 
places this at a huge priority, as you know, and so do we, and 
we will do everything we can to get him the resources that he 
needs to find the breakthrough that will end this, and we will 
do our best.
    Mrs. Rumery-Rhodes. Thank you very much.
                              ----------                              

                                       Wednesday, January 28, 1998.

                                WITNESS

WALLACE E. ZEDDUN, UNITED DISTRIBUTION COMPANIES
    Mr. Porter. Wallace E. Zeddun, vice president, Wisconsin 
Gas Company, representing the United Distribution Companies.
    Mr. Zeddun. Mr. Chairman, thank you very much for the 
opportunity to testify. I represent the United Distribution 
Companies today, a coalition of Northeast and Midwest local 
distribution utilities; a list of which is attached to my 
testimony. Those companies and my own have a very strong 
commitment to seeing that the energy needs of the disadvantaged 
in this country are being met.
    What we are requesting for fiscal year 1999 for the Labor-
HHS appropriations bill is a return to the funding levels of 
$1.319 billion, to provide for advanced appropriations of 
$1.319 billion for fiscal year 2000, and to eliminate the 
setaside for the leveraging incentive program.
    We believe that this is appropriate for the following 
reasons in my prepared testimony but three of which I would 
like to highlight. One, the need still exists; two, this is a 
key program to support welfare reform; and, three, it is also a 
foundation program to allow low-income customers to reap the 
benefits of deregulation in the future.
    Starting with the first one, the need still exists. The 
Center on Budget and Policy Priorities, in a recent report 
using current census data, indicated that the average income 
for the poorest 20 percent of families in this country actually 
fell 1.8 percent from the time period 1989 through1996. The 
poverty rate in 1996 was 13.7 percent as compared to 13.1 percent in 
1989. Now, that is also a much larger population base, so it compounds.
    The percent of families having children and elderly who 
live in poverty is roughly the same in 1996 as it was in 1989. 
During this same time frame, energy prices have increased 
moderately. However, on the other hand, this program has been 
cut over 30 percent during this same time frame. When you 
combine income stagnation for the impoverished along with 
increasing energy prices and a significant decrease in energy 
assistance, the inescapable conclusion is that the energy 
burden is as great now as it was in 1989, if not greater.
    My second point, welfare reform. Energy assistance was one 
of those programs designed not to be solely a welfare program. 
It was designed to be a supplemental assistance program for the 
working poor. That is essentially what is happening with 
welfare reform.
    We all agree with the laudable goals of trying to get as 
many people working as possible. What we find in our community, 
as far as welfare reform, is that the citizens who are engaged 
in the program are being employed at average wages ranging from 
$6.59 to $7.56. This means they still qualify for this program. 
On the other hand, they lose their access to food stamps, and 
that is being borne out by Catholic Social Services. They are 
seeing a doubling, many more people coming to their food 
kitchens who are participating in welfare reform, and they also 
lose access to Medicare.
    These families need to rebuild their credit histories; they 
need to rebuild their work histories.
    If we remove the supplement, energy, which is one of their 
largest burdens, it may very well be the crushing death that 
does not allow them to rebuild their credit histories and thus 
have no chance to participate in the future to get higher 
paying jobs as they rebuild their work history. For that 
reason, I submit that this should be viewed as a bridge program 
for people who are in welfare reform.
    Deregulation: My business--our industry is being 
deregulated. My company will be a transporter essentially under 
deregulation. Private companies, nonregulated, will sell the 
gas molecules. I think you only need to ask a few questions to 
see the impact.
    If you are a private company, who are you going to be 
competing for, somebody who lives in the suburbs where the 
ability to pay is high, or a business or somebody in the 
central city, where you have a high uncollectable problem? 
Which customer class will get the best terms, the best 
conditions, the best prices? Which customer classes have the 
most clout, the most influence?
    This is a foundation. Without this foundation, the poor 
will not be able to afford to pay their energy bills. They will 
not be able to participate in receiving the most favorable 
benefits under deregulation.
    For this reason, I urge the committee to support energy 
assistance as it has a key role in supporting welfare reform 
and in making sure that the deregulation benefits go to all 
families. I thank you very much for your consideration.
    [The prepared statement of Wallace E. Zeddun follows:]


[Pages 283 - 291--The official Committee record contains additional material here.]



    Mr. Porter. Mr. Zeddun, I think that is probably the best 
case that can be made for it.
    How do you answer critics, like myself, who say this is a 
Federal program that was instituted at the time of the Arab oil 
embargo, the second Arab oil embargo, when fuel prices were 
very high and today fuel prices in real terms are lower than 
they were then? And if this isn't a Federal program that ought 
to be terminated because the reason for its existence has 
disappeared, what is?
    Let me say, I recognize the need. There are people out 
there that are in need, there is no question about it. But is 
this the way to address it on a program whose rationale, in my 
judgment, has disappeared long ago?
    Mr. Zeddun. I think if you focus only on energy prices, you 
would have to give serious consideration to it. But you have to 
look at the other side of the equation, which is the spending 
power of the families.
    If you go back and if you do the work and look at the 
statistics, the burden that families have when this program was 
created is largely unchanged, because their incomes haven't 
kept up. Energy prices have gone up, and have moderated since 
1989, but the incomes of the poor haven't kept pace with 
inflation, so the burden has gone down. It has remained roughly 
the same so the need is still there.
    As with any poverty program, the broader you spread it, the 
less it costs all citizens of this country.
    Mr. Porter. Well, the problem of poverty and welfare 
existed before this program. Somehow, the energy companies were 
mandated, probably by the States, not to cut off supplies of 
energy to customers during times that would threaten their 
health, whether it is extreme cold or extreme heat.
    There are those who see this simply as a program that helps 
utilities handle their otherwise bad debts and not a program 
that should be addressed through this way, it should be 
addressed through welfare, through direct payments to families. 
What do you say to that? I am not going to get you into a long 
debate on this.
    Mr. Zeddun. Right. I think to recognize we have bad debts, 
but they are not our bad debts, they are customer bad debts. 
And go back again, because the moratorium does not relieve the 
obligation to pay, it only says we cannot disconnect. It 
doesn't say that the customer doesn't owe the money.
    That means without the supplement, the debt load gets 
higher. Bankruptcies, as we all know, are escalating at a rapid 
pace and becoming a very endemic problem in this society. So I 
think if you look at the broad impact, that iswhere this 
becomes a very important program.
    Mr. Porter. That is not our job, but I think the 
authorizing committee ought to relook at this program entirely, 
target it better, change the nature of the program, and not 
continue it in its present form. But that is simply where you 
and I differ.
    To me, it is kind of an example of how you start a program 
and it goes on forever. We have had great difficulty in 
addressing, I think, priorities, because obviously the program 
has a need and it has a strong constituency and it probably 
will go on. But I would like to see it go on at least in a form 
that has a greater rationale for the real problem that it 
addresses, and that is the problem of poverty and not high 
energy costs.
    Mr. Zeddun. It is really a combination of the two. I mean, 
that probably is the biggest change the program has made in the 
last several years, is that as opposed to just looking at it 
from a poverty perspective, because there are people who are 
low-income who can afford to pay all of their bills. I mean, 
let's not make the assumption that every low-income family 
needs this program. That is not true. There are people who live 
in very substandard housing with very high energy bills and 
have very low incomes, and that is the targeting that has 
really happened over the last several years to make this 
program more effective, and it had to because of the cuts.
    I mean, in the past when it was funded much higher, 
initially it was run more like a welfare program. It is now 
being run based on trying to determine which households really 
have the greatest need for the program.
    Mr. Porter. Well, to be continued.
    Mr. Zeddun. Yes.
    Mr. Porter. Thank you for your testimony.
                              ----------                              

                                       Wednesday, January 28, 1998.

                               WITNESSES

ALAN BROWNSTEIN, AMERICAN LIVER FOUNDATION
DEBBIE DELGADO-VEGA
    Mr. Porter. Alan Brownstein, president of the American 
Liver Foundation, testifying on behalf of the Foundation.
    Mr. Brownstein. Good afternoon.
    Mr. Porter. Good afternoon.
    Mr. Brownstein. Mr. Chairman and members of the 
subcommittee, my name is Alan Brownstein, and I am the 
president of the American Liver Foundation. I am joined here 
today by Debbie Delgado-Vega who is the president and founder 
of the Latino Organization for Liver Awareness.
    I want to thank you for giving us this opportunity to 
testify.
    First, we must thank you for your past leadership in 
support of biomedical research overall and specifically for 
liver disease. This year, unlike previous years, thanks to the 
work of this committee, I have some important progress to 
report. This progress will help benefit the research community 
in helping to fight liver disease, because there are now two 
historic documents that have been produced.
    First, we have the Hepatitis Consensus Development 
Conference that was sponsored by NIH last March that has made 
significant recommendations as to the appropriate research and 
public health response needed for hepatitis C.
    As the committee knows, hepatitis C has been classified as 
an emerging infectious disease, and the death rate from the 
disease each year is now at 10,000 and will more than triple by 
the year 2010 unless there are significant interventions that 
occur.
    The second document and one that was requested by this 
subcommittee presents the collective wisdom of 13 NIH 
Institutes on the research necessary to meet the challenges of 
liver disease. This, in fact, is the first ever research agenda 
to fight hepatitis and other liver diseases, which is near 
completion and will be submitted to this committee in the very 
near future. We thank Dr. Gordon and Dr. Hoofnagle at NIDDK for 
their leadership in producing this document.
    We hope the subcommittee will consider these two documents 
as you fix your appropriations for this year.
    However, in addition to research, education of the public, 
patients, and physicians is essential to prevent hepatitis and 
other liver diseases, and while national leadership is needed, 
what is more important is the grass-roots efforts that provide 
people with the health information that they need to know to 
help prevent diseases. ALF has chapters to do this throughout 
the country. We have also formed an alliance with the American 
Digestive Health Foundation and we will be convening a national 
summit here in Washington on February 24th, where we will be 
bringing together national organizations and local 
organizations from all over the country to address hepatitisand 
to provide that education that is needed.
    A model of one of those grass-roots organizations is the 
Latino Organization for Liver Awareness. We have Debbie 
Delgado-Vega with us today, who herself has received a liver 
transplant. A concrete example of how these organizations can 
work is that organ donor awareness--and we know how badly that 
is needed--that the consent rate among Hispanics in New York 
City was 30 percent in 1993.
    LOLA, Latino Organization for Liver Awareness, was formed 
in 1994, and over the 3 years since LOLA has existed, that 
consent rate has gone up to 59 percent, a 29 percent increase. 
So, therefore, that is a concrete example of how grass-roots 
organizations can work.
    Now it gives me pleasure to introduce Debbie Delgado-Vega 
to share a little bit more about that.
    Ms. Vega. Thank you, Mr. Chairman, for giving us the 
opportunity for being here. Again, I would just like to repeat, 
my name is Debbie Delgado-Vega and I am the founder and 
chairperson of the Latino Organization for Liver Awareness--we 
like to call it LOLA--in New York City. I am also a liver 
transplant recipient.
    Back in April of 1992, at the age of 29, I was diagnosed 
with border immune hepatitis, an incurable liver disease. My 
liver had generated into a mass of scar tissue. My only 
antibodies were attacking my liver, as it was foreign. My only 
chance for survival was a liver transplant.
    All I knew about hepatitis was that it was something 
contagious and that cirrhosis was alcohol related. My ignorance 
embarrassed me. In fact, my liver disease was not contagious, 
it was generic. My life stopped, but only for a minute.
    Devastated but not beaten, I went on a mission in search of 
information about my illness, and I learned that there were 
about 100 different liver diseases and that an estimated 60,000 
people await organ donation in the Nation. I realized that 
information and support for the Hispanics suffering from liver 
disease and those in need of a transplant was needed. This led 
me to take action, and I created LOLA, the Latino Organization 
for Liver Awareness, the first organization of its kind in the 
country. That was in 1994, one full year before my own 
transplant, before my own miracle of life.
    Since then, LOLA has touched many and saved many lives of 
Latinos who otherwise would have not received the proper 
treatment or care. What brings people like LOLA and the 
American Liver Foundation together is our love of life and the 
community. And together we can transform our individual 
struggles into a collective movement to fight for life.
    Thank you.
    Mr. Porter. Thank you both for testifying. We certainly 
share your concerns and will do everything we can to provide 
the kind of funding that makes a difference.
    Thank you.
    Mr. Brownstein. Thank you very much, Mr. Chairman.
    Ms. Vega. 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 statements of Alan Brownstein and Debbie 
Delgado-Vega follow:]


[Pages 296 - 303--The official Committee record contains additional material here.]



                                       Wednesday, January 28, 1998.

                                 WITNESS

VINCENT J. BUFALINO, M.D., AMERICAN HEART ASSOCIATION
    Mr. Porter. Vincent J. Bufalino, M.D., director of 
cardiology at the Edward Cardiovascular Institute and president 
of the Midwest Heart Specialists, testifying on behalf of the 
American Heart Association.
    Dr. Bufalino.
    Dr. Bufalino. Thank you, Mr. Chairman.
    I am a practicing cardiologist in suburban Chicago and a 
member of the National Board of the American Heart Association. 
I am here today to talk to you about heart attacks, strokes, 
and other cardiovascular diseases, still America's number one 
killer, the leading cause of disability in our country.
    Cardiovascular disease accounts for nearly one of every two 
deaths in the United States. Chances are, heart attack, or 
stroke, will be the death or disabler of you or someone you 
love.
    The American Heart Association commends your championship 
of the NIH and the CDC, but we are concerned that insufficient 
resources are being devoted to research and prevention of this, 
America's number one killer, heart disease, the number three 
killer, stroke, and it is clearly the most disabling.
    Now is the time to capitalize on the progress in 
understanding heart attack and stroke. Promising, cost-
effective breakthroughs are on the horizon. Theseinitiatives 
will reduce health care costs and improve quality of life for all 
Americans.
    We urge you to take three steps for fiscal year 1999. 
Appropriate a 15 percent increase over current funding for the 
NIH, the first step toward doubling the budget in 5 years. This 
goal is echoed by Research America, as you know, and the Ad Hoc 
Group for Medical Research Funding.
    Secondly, provide a 15 percent increase over fiscal year 
1998 funding, specifically for NIH heart research and stroke 
research. And thirdly, appropriate $21 million for CDC's 
Cardiovascular Health Program.
    Thanks to the advances in treatment and progress and 
learning about risk factors, more Americans are surviving heart 
attack and stroke. No longer do heart attack or stroke 
necessarily mean immediate death. But now they can mean 
permanent disability, requiring costly medical care, loss of 
productivity, and, of course, decreased quality of life. We 
still have much to do.
    Heart and stroke researchers are on the brink of advances 
that could pave the way to the cure or least prevention, but 
these studies need more funding. Research has produced the 
first effective emergency treatment for stroke. The clot-buster 
drug T-PA can stop a stroke in progress and reduce permanent 
disability when used within 3 hours.
    T-PA could be a miracle drug. It could benefit an estimated 
450,000 Americans at risk of a clot-causing stroke each year. 
But, again, this is not happening. Too often, people do not 
recognize stroke symptoms, patients are not getting to the 
hospital on time, and many health care providers don't treat 
stroke as an emergency.
    Moreover, patients would benefit from improving imaging 
capabilities so that we could make the diagnosis quickly in 
emergency settings.
    In order for T-PA to live up to its full potential and find 
new ways to fight stroke, funds must be invested in cutting-
edge research. Heart attacks and half of all strokes are the 
result of arteriosclerosis. This is the disease process that 
obstructs blood vessels. New theories about the origins of 
arteriosclerosis are emerging. One is inflammation of a blood 
vessel wall; another, a common viral infection; a third, the 
presence of an inherited defective gene.
    Imagine taking an antibiotic or a vaccine and preventing a 
heart attack or a stroke. More funds are needed now, because 
these studies may revolutionize the way we prevent or treat a 
heart attack or a stroke. Results could help prevent the 
estimated 1,000,000 heart attacks and over 600,000 strokes that 
Americans suffer from each year in this country.
    You probably know someone who suffers from congestive heart 
failure, the most common cause of hospitalization for those 
over 65 in America. This disabling condition is growing 
because, thanks to research, more and more people are living 
longer, but with damaged hearts, only to be inevitably limited 
by congestive heart failure.
    Congestive heart failure is a horrible disease. For many, 
relatively simple tasks like making a bed or preparing 
breakfast can be so fatiguing that they need to spend the rest 
of the day in bed. Some must rely on constant daily oxygen. A 
heart transplant may be the only way to curtail their suffering 
or postpone death for some patients, but, as we know, donors 
are quite scarce.
    Funds to study promising areas, including removal of 
nonfunctioning heart muscle, new electronic devices to drive 
the heart, could mean a new lease on life for the 5 million 
Americans who suffer from congestive heart failure.
    Most people do not associate children with heart disease. 
Heart defects are the most common birth defects, 23,000 each 
year, a key cause of childhood disability, and in fact over 
20,000 will die before their first birthday.
    Scientists often do not know why these defects occur. But 
questions are being answered through the work of the 
Specialized Centers for Research of Pediatric Cardiovascular 
Diseases known as SCORES. Resources to renew these SCORES will 
allow continued progress in the fight against these conditions 
that can severely restrict quality for life of newborns, 
children, grandchildren.
    Research results must find their way into the communities 
where heart attack and stroke inflict their damage. The CDC 
works to build that bridge from the lab to the community. The 
strength of that bridge has been enhanced by the creation of 
the CDC Cardiovascular Health Program. Thanks to your help, 
beginning this year, as many as 5 States will receive funds to 
begin this comprehensive disease prevention and control 
program.
    We advocate an appropriation of $21 million to continue to 
reach out to States on heart disease and stroke prevention. 
Increasing resources for both research and community 
intervention will allow us to take great strides against heart 
attack, stroke, and other cardiovascular diseases. This could 
mean the difference between life or death for many of us or 
someone we love.
    Thank you, Mr. Chairman.
    [The statement of Vincent J. Bufalino, M.D. follows:]


[Pages 307 - 318--The official Committee record contains additional material here.]



    Mr. Porter. Dr. Bufalino, I do know someone who had 
congestive heart disease, and that was my mother, who died of 
congestive heart failure. So I am very familiar with the 
condition.
    You said something that I didn't quite understand, and you 
said that often health care providers don't treat stroke as an 
emergency. Is that what you said?
    Dr. Bufalino. I did. It is interesting; stroke has been 
thought of as a permanent disabling disease; when it happened, 
there was really nothing that could be done. Once it had 
occurred, it was complete; much like heart attacks were 15 
years ago when we really didn't have much to offer folks. They 
would come in, we would put them in intensive care and then we 
would wait for the complications.
    Stroke was very similar. This new onset of new therapies 
where we can actually go in, dissolve a clot and actually 
return full function to a paralyzed arm or leg, so that 
information is clearly new, a part of the educational process 
that needs to be done for emergency physicians, neurologists, 
and anyone else who is taking care of stroke patients.
    Mr. Porter. So that education process isn't necessarily 
complete at this point in time?
    Dr. Bufalino. Absolutely not. It is something that we are 
actually in the middle of tackling now. The American Heart 
Association is actually taking the lead to send these kinds of 
information out to practitioners across the country, in rural 
areas, where these drugs can be easily administered.
    Mr. Porter. Well, thank you very much for your testimony. 
It is good to see a fellow Illinoisan here. And I learned a lot 
listening to you.
    Dr. Bufalino. Thank you, sir. Thank you for your time.
                              ----------                              

                                       Wednesday, January 28, 1998.

                                WITNESS

C. MICHAEL SAVAGE, SINAI FAMILY HEALTH SERVICES
    Mr. Porter. C. Michael Savage, Chief Executive Officer, 
Sinai Family Health Services, testifying in their behalf.
    Dr. Savage. Thank you, Mr. Chairman, for providing Sinai 
Family with the opportunity to present testimony before your 
subcommittee this afternoon. I feel a little bit like a fish 
out of water. I am a health care provider, not a researcher, so 
I am going to speak to those issues.
    As the Chief Executive of Sinai Family Health Centers, we 
are the largest network of community health centers in the 
Chicago area. We were born out of Sinai Hospital in the 1980s, 
and it was awarded federally qualified health center status in 
1991. We currently have 23 sites, and we have approximately 
170,000 visits a year by about 60,000 patients.
    As you are probably well aware, the 1990 census figures 
show that seven out of ten of the poorest communities in this 
country are in Chicago. We have facilities in five of those 
communities, serving the indigent, the unemployed, and the 
working poor, regardless of their ability to pay.
    Sinai Family's vision for the health future of its patients 
is focused on a plan to develop a system of urban community 
health care. In order to maintain this commitment, we 
continually reassess and respond to the rapidly changing health 
care environment. As you know, over 41 million Americans today 
are uninsured, the largest amount since the enactment of 
Medicare and Medicaid. Community health centers fill a critical 
void by providing care to over 10 million of those persons.
    In Cook County, Medicaid rolls have decreased by 60,000 in 
the last 2 years. While this is good news--and much of it due 
to a rapidly improving economy, as well as changes in the 
welfare and immigration laws--there is also a down side. The 
vast majority of those 60,000 individuals, primarily women, and 
children are now also uninsured, even though their parents 
work.
    Similarly, with increased enrollment of Medicaid patients 
in managed care, community health centers throughout the 
country are receiving decreased reimbursements for serving 
managed care patients.
    Even though Sinai Family has reengineered its service 
delivery systems and cut encounter costs by 22 percent, we, 
like other community health centers, are being squeezed 
financially by reduced levels of reimbursement and increased 
numbers of uninsured persons.
    For these reasons, Sinai Family is pleased that the 
National Association of Community Health Centers is working 
with Congress and the administration to secure a $100 million 
increase in the Consolidated Health Center Program to serve 
350,000 more uninsured persons.
    Sinai Family has also been pleased to be given a recent 
opportunity to work on reducing infant mortality rates and low 
birthweight rates on Chicago's Westside through a Healthy Start 
grant. Nineteen out of every 1,000 babies born in Chicago's 
Westside die during their first year of life. Through this 
Bureau of Maternal and Child Health Healthy Start grant, we 
will be able to reduce this shockingly high rate of infant 
mortality and low birthweight rates through the implementation 
of proven community health practices.
    We have also developed a number of programs to respond to 
other health care needs of low-income residents in Chicago's 
poorest neighborhoods. A more detailed description is in my 
written testimony, which has been submitted, but three I want 
to mention briefly.
    Senior citizens, even though they are insured with 
Medicare, we are finding, are having tremendous health problems 
in the inner city. That is not only a combination of aging but 
also poverty and fear of crime, which limits people's ability 
to both access and stay attached to primary health care.
    In the last 4 months, through a senior outreach program, we 
have linked 400 seniors with chronic health care problems to 
ongoing primary health care. I would encourage you to ask the 
Administration on Aging to develop some evaluation programs 
looking at these linkage types of programs.
    Likewise, the CDC should continue its work to control the 
spread of HIV and other sexually transmitted disease. Thereis 
now strong evidence that the presence of other STDs increases the 
likelihood of both transmitting and acquiring HIV and that, conversely, 
early identification and treatment of STDs can slow the spread of HIV.
    Lastly, despite overall lower rates of breast and cervical 
cancer among African-American women, we are seeing all sorts of 
research that shows that they have a higher mortality rate 
because their illness is diagnosed later in their disease. 
Sinai would welcome the opportunity to work with the CDC to 
expand early screening and treatment programs to address their 
specific needs.
    Mr. Chairman, I would like to thank you for your past 
support for the community health center program and for the 
opportunity to present testimony this afternoon. I would be 
happy to answer any questions on health centers in your 
hometown.
    [The prepared statement of C. Michael Savage follows:]


[Pages 322 - 329--The official Committee record contains additional material here.]



    Mr. Porter. My hometown? Chicago isn't quite my hometown, 
but it is close.
    Mr. Savage. The Chicago metropolitan area, how is that?
    Mr. Porter. You mentioned that the Sinai Family Health 
centers are in the process of developing a system of urban 
community health care. Can you expand on that a little bit?
    Mr. Savage. As you probably are well aware, in more middle-
class or affluent communities, you have a primary health care 
infrastructure. You have private physicians, you have group 
medical practices, you have staff-modeled HMOs. In most poor 
urban communities and in many rural communities, that 
infrastructure doesn't exist outside of community health 
centers and hospital emergency rooms. Private practices have 
essentially left those communities, if they have ever been 
there.
    So I think the community health center program is central 
to putting primary care infrastructure into communities. I 
think that is why NACHC's request is so important, because if 
that infrastructure is not there, there is no way to deliver 
health care in a cost-effective manner and also in a continuous 
manner.
    But even with that infrastructure, I really believe that 
there have to be other programs like some of the ones that I 
have mentioned that target particularly vulnerable groups of 
individuals or particular diseases in order to keep people 
successfully attached. So that is what I am trying to speak to.
    Mr. Porter. Mr. Savage, thank you very much for your good 
statement. We will also do our best in respect to your 
concerns.
                              ----------                              

                                       Wednesday, January 28, 1998.

                                WITNESS

THOMAS M. BRUCKMAN, UROLOGIC RESEARCH AND CARE COALITION
    Mr. Porter. Thomas Bruckman, Executive Director and CEO of 
the American Foundation for Urologic Disease, testifying on 
behalf of the Urologic Research and Care Coalition.
    Mr. Bruckman. Good afternoon, Mr. Chairman, and thank you.
    I am Tom Bruckman, CEO of the AFUD, and also Director of 
Public Policy of the National Prostate Cancer Coalition. I am 
here today speaking on behalf of the Urologic Research and Care 
Coalition, and we would like to begin by thanking you for your 
support of biomedical research at NIH and throughout the 
government.
    However, Mr. Chairman, despite the efforts of Congress to 
fund urologic research, the program continues to fall behind 
other areas at NIH. While Congress approved a 7.5 percent 
increase last year, the NIDDK within the Institute chose to 
limit urology to 3.5 percent instead of the 7.5 percent. The 
growth of spending for urology at NIH was among the lowest of 
all categories; only research into lead poisoning received a 
smaller increase. We understand the NIH recently committed to 
increase urology funding at the same rate as the overall 
funding rates, and we appreciate that, but it is a little bit 
behind at this point.
    Mr. Chairman, the number of Americans who suffer from 
urologic diseases and conditions is staggering. The NIH 
estimates that every year over 8 million people suffer 
fromacute urinary conditions, such as urinary tract infections. Over 4 
million people experience bladder disorders. Approximately 13 million 
adults suffer from incontinence. Interstitial cystitis affects nearly 
500,000 people. More than 2 million men will experience prostate 
disease, the most diseased organ in the human body, like BPH or 
prostatitis. Over 200,000 new cases of prostate cancer were diagnosed 
and over 40,000 men died last year.
    Thousands of people are diagnosed with kidney, bladder, and 
testicular cancers. Approximately 15 to 20 million men over 40 
suffer from impotence. The estimated economic impact of 
urologic diseases and conditions exceeds $50 billion a year. 
For fiscal 1999, the Coalition recognized an overall increase 
in urologic research funding of 9 percent.
    We also recommend the subcommittee take steps to address 
the disparity of funding for prostate cancer research, 
specifically. The NCI should be able to commit at least 100 
million for research for fiscal year 1999. The URCC also 
recommends that the subcommittee direct the NCI to put research 
funding on breast and prostate cancer into equilibrium as 
quickly as possible. Almost 50 percent of all cancers in the 
human body occur in the urologic tract.
    The Coalition believes that the disparity in urologic 
research funding is due in large part to the lack of focus for 
urology research at NIH and within the Federal Government 
generally. Traditionally, grant applications in urology have 
been sent to as many as nine Institutes at NIH, with possible 
review by 20 study sections.
    The NIH has finally responded to some of these concerns by 
creating a special emphasis panel to review urologic research 
grant applications. The panel is designed to ensure that 
appropriate urological expertise is available for grant review, 
but it is just being set up, and it is a long time in coming. 
Just yesterday, the NIH expressed its willingness to work 
effectively on this particular issue. We ask the subcommittee 
to make sure that they continue this effort.
    The problem caused by having nine institutes in the mix is 
compounded by the addition of other Federal agencies, such as 
the VA, the CDC, and the DOD now funding some portion of 
urological research. In order to maximize the effectiveness of 
all of these efforts, a strong steering committee needs to be 
in place. The present coordinating council does not have the 
budget or the authority to be effective.
    The Coalition recommends three steps to improve the 
structural problems facing federally funded urologic research: 
Number one, focus urologic research in fewer Institutes; review 
the number of study sections reviewing urologic applications; 
strengthen the role of the interagency council in urology by 
giving a budget and clear authority to coordinate federally 
funded urologic research activity.
    The subcommittee called last year on the NIDDK to develop a 
urologic disease database, something we presently don't have. 
We urge the committee to make sure that the NIDDK continues its 
efforts to complete this work soon.
    Lastly, let me mention URCC's concern that the NIDDK has 
just scratched the surface on activities relating to women's 
urologic health programs.
    Mr. Chairman, that completes my testimony. My entire 
testimony is available in written format.
    [The prepared statement of Thomas Bruckman follows:]


[Pages 333 - 339--The official Committee record contains additional material here.]



    Mr. Porter. Mr. Bruckman, you are right on time. You are, I 
am sure, aware that this particular subcommittee has a great 
concern about prostate cancer. We lost two of our prominent 
Members, George O'Brien and Sil Conte, to prostate cancer.
    Mr. Bruckman. Yes, sir.
    Mr. Porter. I think we have made it a priority.
    You also know that we don't fund by disease, we fund by 
Institute. When you find yourself spread among a lot of 
Institutes, it is hard to----
    Mr. Bruckman. It is part of the uncoordinated factor.
    Mr. Porter. It is what you were talking about.
    Mr. Bruckman. Yes, sir.
    Mr. Porter. We certainly do place urological research at a 
high priority, and we do, I think, send clear messages to NIH 
of our feelings in that regard. So we will do our best to 
respond to these needs. I think they are real and, overall, the 
decisions on where scientific opportunities lay has to be with 
science and not with this subcommittee, obviously.
    On the other hand, I think the suggestions you have made 
about strengthening the panels and making certain that the peer 
review process works fairly in respect to diseases like 
prostate cancer and other urological ailments is a very real 
problem that I think NIH is attempting to address. We will keep 
our eye on it.
    Mr. Bruckman. Thank you, sir, we appreciate your support. 
That is very encouraging. Thank you.
                              ----------                              

                                       Wednesday, January 28, 1998.

                                WITNESS

STANLEY B. PECK, AMERICAN DENTAL HYGIENISTS' ASSOCIATION
    Mr. Porter. Stanley V. Peck, Executive Director, American 
Dental Hygienists' Association, testifying on behalf of the 
Association.
    Mr. Peck, nice to see you again.
    Mr. Peck. Nice to see you, sir.
    Mr. Chairman, on behalf of the American Dental Hygienists' 
Association, I want to thank you for the opportunity to testify 
regarding fiscal year 1999 appropriations for the Department of 
Health and Human Services and, in particular, the National 
Institute of Dental Research.
    As you know, I am Stan Peck, ADHA's Executive Director. 
ADHA is headquartered in Chicago. It is the largest national 
organization representing the professional interests of the 
approximately 100,000 dental hygienists across the country.
    Dental hygienists are preventive oral health professionals 
who are licensed in each of the 50 States. Dental hygienists 
are committed to improving the Nation's oral health, a 
fundamental part of total health. Despite recent advances, oral 
diseases are still among the Nation's most chronic health 
problems. The Institute of Medicine estimates that 50 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 has yielded significant oral health advancements.
    Fifty years ago Members of Congress decided to create the 
National Institute of Dental Research within NIH. This decision 
has proven to be a wise investment, indeed. NIDR's work in 
dental research has not only resulted in better oral health for 
the Nation, it has also helped curb diseases and 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 health care.
    Continued research at NIDR is critical to the future of 
oral disease prevention and oral health promotion. ADHA 
strongly endorses NIDR's strategic plan, which calls for 
expanded research in health promotion, additional public health 
education efforts, and an increased focus on important oral 
cancer research.
    Since more Americans are lost each year to oral cancer than 
to cervical cancer or Hodgkin's disease, NIDR research to 
reduce the morbidity and mortality associated with oral cancer 
is critical. Dental hygienists, too, play a role in the battle 
against oral cancer by routinely examining each of their 
patients for signs of oral cancer. To enable NIDR to continue 
and to build upon its important research mission, ADHA joins 
with other dental groups to recommend $240 million for NIDR.
    ADHA wishes to take this opportunity to commend this 
subcommittee and all Members of Congress on passage of the 
historic State Children's Health Insurance Program, which was 
part of the Balanced Budget Act of 1997, and which will extend 
health insurance to as many uninsured low-income children as 
possible. ADHA worked hard to promote the inclusion of oral 
health in the children's health initiative, and ADHA is now 
working with the States to encourage the strongest possible 
oral health component in State Children's Health Insurance 
plans. Inclusion of oral health benefit plans is important 
because preventable oral disease is the single most common 
childhood disease.
    One approach to improving children's health is to include 
dental sealants and fluorides in any definition of childhood 
immunizations. While research to develop a vaccine against 
tooth decay continues, we can effectively today guard against 
tooth decay, which is an infectious, transmissible disease, 
with the combined use of dental sealants and fluorides. Dental 
sealants and fluorides protect children against tooth decay 
just as vaccines immunize against certain medical diseases.
    ADHA also lends its support to the Division of Oral Health 
within CDC. Specifically, ADHA urges a budget of $6 million for 
the Division of Oral Health. This funding level will enable the 
Division of Oral Health to continue its vital work to control 
and prevent oral diseases, including its important work in the 
area of water fluoridation.
    ADHA joins the Allied Health Roundtable in supporting Title 
VII of the Public Health Service Act and recommends full 
funding for Allied Health Project Grants and Allied Health 
Advanced Training.
    Allied health disciplines constitute fully 60 percent of 
the health care workforce. With the acknowledged need for cost-
effective health care providers, now is the time to augment 
funding for and recognition of these important allied health 
programs.
    ADHA also urges enactment of comprehensive tobacco 
settlement legislation, and urges that smoking and spit tobacco 
prevention programs be funded in that legislation. As 
preventive oral health specialists, dental hygienists know full 
well the value of prevention. Cigarette and smokeless tobacco 
use creates serious and preventable public health problems.
    With regard to the Department of Labor, ADHA believes OSHA 
has an important role to play in promoting employee safety, and 
ADHA urges the subcommittee to appropriate monies such that 
OSHA will be able to improve employee safety in the workplace, 
including the dental hygiene workplace.
    In closing, the members of the ADHA appreciate the 
important contributions of this subcommittee, and those that 
have been made in improving the quality and availability oforal 
health services. ADHA is committed to working with you and all Members 
of Congress to improve the Nation's oral health, a vital part of total 
health.
    Thank you for this opportunity to submit the views of the 
American Dental Hygienists' Association.
    [The prepared statement of Stanley B. Peck follows:]


[Pages 343 - 347--The official Committee record contains additional material here.]



    Mr. Porter. Mr. Peck, we appreciate your again coming 
before the subcommittee to represent the dental hygienists.
    Your offices are in Chicago?
    Mr. Peck. Yes.
    Mr. Porter. Do you live in the Chicago region?
    Mr. Peck. Yes, I do, on Wabash.
    Mr. Porter. Wabash. You are not a native Chicagoan?
    Mr. Peck. No, I am not. You could tell from my accent.
    Mr. Porter. Where do you come from?
    Mr. Peck. I am a native New Yorker. Lived in Washington for 
12 years and lived in Chicago for nearly 5.
    Mr. Porter. I would have guessed all that.
    Thank you for coming to appear again. We appreciate your 
testimony. The subcommittee will stand in recess for 3 minutes.
    Mr. Peck. Thank you, sir.
    [Recess.]
                              ----------                              --
--------

                                       Wednesday, January 28, 1998.

                                WITNESS

HARRY TETER, AMERICAN TRAUMA SOCIETY
    Mr. Porter. The subcommittee will come to order.
    The next witness is Harry Teter, Director of the American 
Trauma Society, representing the Society.
    Mr. Teter.
    Mr. Teter. Mr. Chairman, I am very pleased to be here today 
to represent the Members of the American Trauma Society on 
several issues that we find extremely important. I am very 
pleased. I have a statement here that I will put in the record, 
if I may just make a few comments on the side.
    I would, of course, like to be here today and be testifying 
on behalf of the Institute for Trauma, but we don't have an 
Institute yet. We have a lot of work that is being done in 
other areas, and specifically, some that I would like to draw 
attention to today--the National Center for Injury Prevention 
and Control at CDC; of course, the good work done at other 
agencies of HHS; the Emergency Medical Services for Children; 
and others that are doing good research work in trauma.
    There are two things that bring me here today. The Trauma 
Society is very concerned with proper care for trauma patients, 
and we are also very concerned that there be good, effective 
injury prevention programs available.
    The statistics on injury are staggering. I am sure they 
have been presented here before; they are in my testimony as 
well. But injury is a major cause of health care problems. It 
is a high-ranking public health care issue and one that we all 
must be concerned with. In the trauma business we see it all 
too frequently, every day. We see injuries that could have been 
avoided, could have been prevented, and we hope that in the 
future that will happen with good programs and good education. 
There is no denying the fact that we must have good care. To 
that end, I want to applaud the research that is being done and 
encourage more research to be done in the area of trauma care, 
acute care.
    There is one area in particular that I hope we can address 
in the future. That is measuring the true value of trauma 
systems. We know they save money; we know they save lives. But 
daily, that is questioned, as we look at--because they are very 
highly--they use a lot of resources, and managed care, et 
cetera, wants to say, well, did they really need all this care? 
Did they really need all these resources?
    We know they do. They are saying, well, prove it. We would 
like to set out to do that, but we would like to have an 
objective person or organization really examine the outcomes of 
trauma in the trauma center and the trauma system versus a 
nontrauma system.
    These systems, as I say, we know save lives. We must 
continue to build them across the country.
    Actually, we would like to see that nobody even gets into 
the trauma system at all. Therefore, I want to applaud the work 
being done by the National Center for Injury Prevention and 
Control at CDC. I think in the short time they have been in 
existence they have a remarkable story to tell of excellent 
research they are doing.
    One thinks immediately of the good work being done on 
helmet use, on smoke alerts, smoke detectors, et cetera. But 
there is far more that is being done there. I hope that I will 
be able to, in the next month, present a real overview to you 
of all of the research that the various centers are doing.
    The CDC group there funds research, as you know, both at 
the Center, and they fund programs of research in 10 injury 
control centers across the country. The stories, as I say, are 
quite interesting, because we really look at all types of 
injuries, both in the young and the old; and, too, I don't know 
if we can consider ourselves in between, but I would like to 
think so. But at any rate, they are looking at these injuries 
very carefully, and how they can be prevented.
    But most importantly, too, is once we know the prevention 
and what works, we have to get the word out there. That is 
another function that the Centers for Disease Control's Injury 
Prevention Program is doing, and needs to continue to do.
    So today, I would strongly urge the committee to 
giveincreased funding to the Center for research and for the education 
programs that they are doing, and the work they are doing in what they 
call Safe America. It is a truly worthy cause.
    I would like to also say that the work that is being done 
at the Emergency Medical Services for Children is extremely 
valuable for childhood injuries, and we applaud that work and 
also hope that that will receive increased funding.
    One program that I think should be looked at, and that is 
the Emergency Medical Services--well, the block grant, 
Preventive Health and Health Care Block Grant at CDC. Years ago 
we had a specific categorical program on Emergency Medical 
Services. It was a superb program that unfortunately got put 
into a block grant. It is being given short attention these 
days, and I hope that we can eventually see that program moved 
out, possibly going into the Center for Injury Prevention.
    At any rate, thank you for your time here today, and I will 
be glad to answer any questions.
    [The prepared statement of Harry Teter follows:]


[Pages 350 - 359--The official Committee record contains additional material here.]



    Mr. Porter. Mr. Teter, how much trauma is accidental, as 
opposed to intentional?
    Mr. Teter. Mr. Chairman, I truly cannot answer that 
question, because I would take a guess that it is probably 
about 60/40, 60 unintentional, 40 intentional. The highway 
trauma that comes from car crashes I would lump as 
unintentional. One might say that drunk driving, et cetera, is 
not unintentional. But if we do the car crashes, which are 
roughly about 50 percent of the trauma we see, we certainly see 
trauma in the workplace. We see trauma at home that is 
unintentional, and injuries. It may be even 70/30.
    Mr. Porter. Thank you very much for your testimony this 
afternoon. We appreciate it.
                              ----------                              

                                       Wednesday, January 28, 1998.

                                WITNESS

BRUCE M. CARLSON, Ph.D., M.D., AMERICAN ASSOCIATION OF ANATOMISTS
    Mr. Porter. Bruce M. Carlson, Ph.D., M.D., President, 
American Association of Anatomists, Professor and Chairman, 
Department of Anatomy and Cell Biology at the University of 
Michigan Medical Center, Ann Arbor, Michigan, testifying on 
behalf of the American Association of Anatomists.
    Dr. Carlson. Thank you very much for the opportunity to 
testify. As you mentioned, I am testifying as President of the 
American Association of Anatomists. This association is a 
professional organization consisting of somewhat over 2,500 
members who conduct research on the structure and function of 
the human body. Our members are conducting the research in 
virtually all major universities, medical schools, and 
government laboratories. In addition, anatomists teach a good 
share of the first-year medical curriculum.
    Thanks to the continuing support of the Congress, at least 
in my opinion, the American biomedical research establishment 
probably has no equal anywhere else in the world. I have had 
the personal privilege of being able to continue extensive 
research in a number of countries, including the Soviet Union, 
Czechoslovakia, Finland and The Netherlands. In the former 
Eastern Bloc, research is typically conducted from the top down 
in terms of planning, and research was conducted in institutes 
separated from the universities. In my experience, in all of 
the countries I have been in, I have encountered very good 
research, but in no country has the environment for basic 
research been as conducive to progress as that we have in our 
country.
    The investigator-initiated research in our own universities 
is very important because of the stimulus we get from students 
and trainees who really provide energy to the research process; 
and also from the intellectual drive that stems from 
investigators who are working on projects in which they have an 
intense personal interest. I strongly believe that the unique 
entrepreneurial spirit of basic biomedical research in this 
country is the engine that drives much of our productivity.
    The American Association of Anatomists supports the 
recommendations of the consensus conference of FASEB for the 
fiscal year 1999 budget of the NIH, and specific points are in 
my written testimony. I will not reiterate them here.
    At present, biomedical science, as you well know, is 
progressing at an absolutely unprecedented rate. As a writer of 
embryology textbooks, I am continually amazed and frankly 
overwhelmed by the amount of new information that has come out 
in the last 8 or 10 years. About 4 years ago now, I had 
published a new text in medical embryology. Within 6 weeks of 
publication significant parts of the book were completely out 
of date because of major new research findings.
    Just last week, a colleague of mine at the University of 
Michigan was lecturing to the freshman medical students 
ondevelopment of the brain and spinal cord. Fully three-quarters of her 
lecture consisted of information that we did not know 4 years ago.
    My own current laboratory research has moved from studies 
of embryonic development to studies of aging and, in 
particular, the aging of muscle. I am trying to understand the 
basis for reduced muscle function and the poor regenerative 
capacity of muscle as an individual ages. This research has 
been supported by the National Institute on Aging.
    Other research that is being supported by this same NIH 
Institute involves the application of guided exercise programs 
to individuals in their nineties who have very poor mobility. 
Thanks to some scientific studies that have been conducted on 
human exercise, individuals who literally had to have 
assistance to get out of bed or go to the bathroom could now 
fulfill these functions in an unassisted manner; individuals 
who could not walk fast enough to get across the street during 
the course of a normal green light can now walk across the 
street unassisted.
    Despite the generous support of biomedical research, there 
is still much excellent work that remains to be done. Other 
projects have suffered lapses in terms of the continuity of 
funding. Let me stress the importance, number one, of peer 
review and, number two, the continuity of funding issue. Peer 
review is very important in our scientific process, not only 
for deciding who will or will not get research grants, but for 
maintaining a level of science. We often find that individuals 
who have excellent research projects, but who have had 
difficulty with one aspect because of peer review may suffer a 
6- to 9-month period where funding is not available. If this 
shuts down the laboratory, it may be 2 or 3 years before that 
laboratory is up to full function. Therefore, I think it would 
be very important to have mechanisms in place for bridge 
funding for the basic functions of a laboratory that is in this 
particular interim period.
    The maintenance and upgrading of research infrastructure is 
also very important. To me, infrastructure goes far beyond 
bricks and mortar, but it refers to scientific capabilities. 
Examples would be common courses for specialized equipment that 
would be beyond the reach of an individual laboratory or 
national center for the care and maintenance of rare breeds of 
research animals.
    Contemporary biomedical science is evolving at an 
unprecedented rate. To maintain this momentum, we must continue 
to bring new brains and energy representing all elements of our 
population into the national research effort. The American 
Association of Anatomists appreciates and strongly supports 
programs for the NIH for training of diverse groups for 
independent research careers.
    Mr. Chairman, we in the biomedical research community 
recognize and thank you for the generous support that the 
subcommittee has shown us over the 104th Congress and 105th 
Congress. The American public and Congress have placed a great 
responsibility on the biomedical research community to 
translate this support into improved national health and well-
being. We accept this challenge and I hope that the products of 
our efforts will speak for themselves as advances in science 
are incorporated into medical products and practices.
    Thank you very much.
    [The prepared statement of Bruce Carlson, M.D., follows:]


[Pages 363 - 370--The official Committee record contains additional material here.]



    Mr. Porter. Dr. Carlson, thank you for your good testimony.
    I am pleased to see that a professor of my alma mater is 
president of the association, and we were happy to have you 
here today and hear what you have to tell us. We have made some 
important notes that we will follow through on and appreciate 
your coming to testify.
    Dr. Carlson. Thank you very much. I appreciate that.
                              ----------                              

                                       Wednesday, January 28, 1998.

                                WITNESS

JOSEPH WEISENBURGER, INTERSTATE CONFERENCE OF EMPLOYMENT SECURITY 
    AGENCIES
    Mr. Porter. Joseph Weisenburger, Deputy Commissioner, New 
Hampshire Department of Employment Security and Interstate 
Conference of Employment Security Agencies, in behalf of the 
Conference.
    Mr. Weisenburger.
    Mr. Weisenburger. Thank you. Mr. Chairman. I am here today 
to testify on behalf of the Interstate Conference of Employment 
Security Agencies, a national organization of public officials 
who administer the Nation's unemployment insurance programs, 
the public employment service, the labor market information 
programs, and in 41 States, the job training programs, and now 
a growing number of welfare-to-work programs.
    As you know, the employment security system is funded by a 
dedicated tax paid by employers. While this tax is sufficient 
to maintain and fund the proper and efficient administration of 
our programs, because of the focus on the Federal deficit and 
the inclusion of these trust funds in the calculations of the 
budget, we have received substantial cuts in our programs which 
have jeopardized the integrity and effectiveness of those 
programs. We ask you to begin the process of restoring the 
appropriations to our very important programs.
    For the public Employment Service, we first ask that you 
increase the appropriation from its current level of $761 
million to $811 million. The justification for that is that 
several years ago, this Congress began funding the creation and 
implementation of one-stop career centers. It has now become 
obvious to the Department of Labor and to the States that the 
public Employment Service will be the glue that holds these 
one-stop systems together.
    So we urge you, in order to keep the successes that we have 
already achieved in this one-stop system moving forward, we 
urge you to fund the Employment Service at this new higher $50 
million level as a beginning to--as these one-stop systems 
start to come together.
    For the unemployment insurance program, first we would like 
to thank you for the special $200 million appropriation you 
granted to the States so we could deal with the problems of the 
millennium. While it is a very close time frame, without that 
funding we certainly would have had serious disruptions in the 
payment of unemployment benefits.
    The unemployment insurance program for the past 62 years, 
the partnership between the Federal Government and the States, 
has worked fairly well. The Federal Government, the Department 
of Labor, that is, funded the States using a formula that took 
into consideration the workload in each State and the cost of 
doing business in each State. However, because of the focus on 
the budget problems, we no longer fund the system in that 
manner.
    As an example, this year the Department of Labor, in trying 
to determine what the base allocation would be for the States, 
estimated that the States would need sufficient resources to 
process 2 million claims a week. The final appropriation only 
turned out to fund 1.8 million claims a week. That means that 
currently every week the State employment security agencies are 
processing 200,000 claims without any Federal general revenue--
I am sorry, without any of the dedicated overage amount in 
taxes.
    We urge you to reconnect the funding of the unemployment 
insurance system to that workload formula that actually funds 
the States based upon their actual costs, and provides the 
services that unemployed workers who lose their jobs through no 
fault of their own need.
    There are several other miscellaneous programs that we run. 
We ask you, and it is particularly an urgent request for the 
Alien Labor Certification program--2 years ago the Congress cut 
the appropriation for this program by 50 percent. That cut, 
tied with significant workload increases, has caused enormous 
backlogs at the State level. Employers are furious. It has 
caused a black eye on the public Employment Service. One State 
received a bomb threat, others have received other threats of 
violence. Some States, because of the seriousness of this, are 
considering discontinuing the administration of this program 
unless the funds are restored to what we believe is the 
appropriate level of $50,500,000.
    For the Workforce Opportunity Tax Credit, we ask you to 
continue the funding level at $20 million that we currently 
have this year.
    For our Labor Market Information programs we ask a small 
increase in that very important program, which is the economic 
cornerstone to economic development at the State level; and for 
the information that is necessary at the one-stop career 
centers, we ask $55 million this year for the cooperative 
program with the Bureau of Labor Statistics.
    Finally, for our veterans' programs, which are seriously 
underfunded, we ask that the Congress begin a process of 
funding our disabled veteran representatives and our local 
veteran representatives to a level that guarantees at least one 
veterans' representative in each of the one-stop career centers 
throughout this country.
    Thank you, Mr. Chairman. I would be glad to answer 
questions.
    [The prepared statement of Joseph Weisenburger follows:]


[Pages 373 - 379--The official Committee record contains additional material here.]



    Mr. Porter. Mr. Weisenburger, on the State operations for 
the unemployment compensation trust funds, staff tells me we 
level-funded that between fiscal 1997 and 1998.
    I thought I had heard you say that you were only able to do 
1.8 million out of 2 million operations. Was it underfunded to 
start with? Because it seems to me in this economy, our 
unemployment is at an all-time low. I think the President said 
last night it was at a 27-year low.
    Mr. Weisenburger. The unemployment rate is low. There is a 
different between the total unemployment rate and the 
unemployment insurance program.
    Mr. Porter. I understand, but it should be also tracking 
pretty comparably, shouldn't it?
    Mr. Weisenburger. Yes, it is. It is low. Next year 
actually, we project taking 9.1 million claimants, and that is 
still a lot of people, even though the unemployment rate is 
low. But we have been funded based upon our workload. If the 
workload goes down, our funding goes down and that works, and 
we respect that process; but the funding has been cut way below 
those levels that are needed to process even low claims.
    Mr. Porter. I see. So it was low to begin with?
    Mr. Weisenburger. Two million low. Actually, we probably 
take 2.7 million claims every week.
    Mr. Porter. The amount of money that was allocated 
forfiscal year 1997, you are saying, was inadequate to start with?
    Mr. Weisenburger. That's correct, based upon the cost of 
doing business at the State level, they only processed 1.8.
    Mr. Porter. Thank you very much for your testimony.
                              ----------                              --
--------

                                       Wednesday, January 28, 1998.

                                WITNESS

JOHN SUTTIE, AMERICAN SOCIETY FOR NUTRITIONAL SCIENCES
    Mr. Porter. John Suttie, Ph.D., professor of biochemistry 
and nutritional sciences, testifying on behalf of the American 
Society for Nutritional Sciences.
    Dr. Suttie, it is good to see you.
    Mr. Suttie. It is good to see you.
    I am John Suttie, professor of the Department of 
Biochemistry and Nutritional Sciences at the University of 
Wisconsin. I have also served as president of the Nutrition 
Society and recently served as president of the American 
Society for Experimental Biology.
    It is as a representative of the Nutrition Society that I 
appear before you today in support of the research budget of 
the National Institutes of Health. Our society is the principal 
professional organization of nutritional research scientists in 
the United States. It represents 3,500 members whose purpose is 
to develop and extend the knowledge and application of 
nutrition.
    Our leaders participated in FASEB's Federal Funding 
Consensus Conference last month, and we endorsed their 
recommendation of a 15 percent increase for the fiscal year 
1998 NIH budget. This increase would represent an initial step 
toward the goal of doubling the NIH budget over the next 5 
years, a goal which many of your colleagues in the House and 
Senate have publicly supported. We are also pleased at the 
recent indications of increased NIH support from the 
administration.
    All citizens should be grateful to this subcommittee for 
the continued support of the NIH budget during the period of 
strong competition for limited resources. As the cornerstone of 
preventive medicine, nutrition is the key to enhancing 
individual and public health.
    Nutritional research, although multidisciplinary, has one 
goal: To understand the role of appropriate nutrition in 
growth, development, quality of life, decreasing disease risk, 
and treatment of existing disease. Inappropriate nutrition is a 
primary factor in unattained genetic development, reduced 
productivity, and increased susceptibility to diseases such as 
heart disease, cancer, stroke, liver disease, and 
atherosclerosis. Diseases like these cost our Nation billions 
of dollars annually in health care and lost productivity.
    According to a 1997 report from NIH, the annual cost of 
illness related to cancer, diabetes, heart disease, and 
Alzheimer's disease is nearly $450 billion, approximately $203 
billion in medical care and $245 billion in lost wages and 
productivity.
    It is important to recognize that optimal nutrition is one 
of the best means of keeping these health care costs down. Our 
society advocates that the level of NIH support for nutrition 
research reflect the important role of diet in health promotion 
and in the prevention and treatment of disease. Let me share 
with you a few examples of progress that has been made.
    First, it has been found that caloric restriction in diets 
extends the life-span and health span of primates. Rhesus 
monkeys subjected to dietary restriction were shown to have 
less body fat, increased insulin sensitivity, lower fasting 
glucose levels, improved glucose tolerance, reduced oxygen 
consumption, and lower weights. Understanding of these 
nutrient-related biologic responses that bring about these 
alternatives and alterations will require increased funding for 
this area of research.
    Second, ongoing studies in transgenic gene ``knockout'' 
mice show that caloric restriction used as a dietary 
perturbation has delayed tumor appearance and development and 
prolonged survival significantly. This finding establishes that 
dietary manipulation is an effective way to reduce cancer 
incidence.
    Third, research has found that fish, other seafoods, and 
fish oil contain a class of polyunsaturated fatty acids that 
may reduce the risk of coronary heart disease. Evidence shows 
that death due to heart disease is lower among men who consume 
higher amounts of these fatty acids.
    The nutrition community is proud of our past, and our 
ongoing achievements show great promise. A renewed andlong-term 
national commitment to invest in biomedical research for the continuing 
benefits of society is essential, and nutrition research will play an 
important role in this development.
    I mention three research areas for funds directed towards 
nutritional research which will be particularly cost-effective: 
Aging, cancer, and cardiovascular disease.
    Another opportunity is prepared by the success of NIH and 
other agencies to sequence the human genome. This will not only 
allow physicians to effectively target drug therapy to 
individuals but will also open the door to the identification 
of nutrient requirements of each individual. This area will 
also require increased funding.
    Finally, it is important that we adequately train young 
scientists who will be able to prepare us for new challenges. 
Ensuring that the new generation of nutritional scientists will 
establish the links between nutrients and gene expression are 
trained to use the latest knowledge and tools developed by 
molecular and cellular biologists is essential. These training 
activities will require funding.
    Members of the American Society for Nutritional Science are 
aware that allocation of resources requires you to make 
difficult choices. We urge you to continue the support you have 
provided the NIH in recent years, and we pledge our support in 
efforts to influence the budget allocation process.
    Thank you again for the opportunity to testify.
    [The prepared statement of John W. Suttie follows:]


[Pages 383 - 394--The official Committee record contains additional material here.]



    Mr. Porter. I was delighted particularly with your last 
sentence.
    Dr. Suttie. I think we all recognize that this is 
essential.
    Mr. Porter. Yes, it is essential, and it will make all the 
difference in the outcome, so we will do our best. I said this 
morning, I am not sure I said it this afternoon, but let me say 
it anyway so we are clear--let me ask you, were you encouraged 
by what the President had to say last night in the last few 
sentences of his State of the Union about research?
    Dr. Suttie. I was encouraged, certainly, that I think we 
have seen a stronger position from the President than we have 
seen in recent years. I think that those of us that are 
actively involved in biomedical research would perhaps like to 
see a somewhat larger allocation than he is talking about, but 
I think we see this as a base and a floor to start from. But I 
think it is encouraging to see us start with a higher level of 
support.
    Mr. Porter. I said basically the same thing, Dr. Suttie, 
that I was encouraged that normally, given the priority at 
which the subcommittee places biomedical research, that it puts 
a floor under it, except that a good portion of the increase in 
spending in the discretionary accounts under his budget will be 
required to be supported by the revenue increases that he also 
proposes, including the tobacco settlement.
    While I think increased funding from tobacco taxes or 
related revenues from the tobacco industry are wonderfully 
justified, I also know that a lot of Members of Congress don't 
like to increase any kind of revenue sources, and it is 
problematical that we will get the revenues to support the 
spending. That will make it much more difficult.
    You agree with that, I assume?
    Dr. Suttie. The money from the tobacco settlement is not 
there yet, and there is a question how much will be there.
    Mr. Porter. There is a question as to whether this will 
actually be able to be addressed in this fiscal year because of 
electoral politics, among other reasons, and also because it is 
such a huge, difficult, complex subject to resolve. So I think 
we have to worry about that.
    We thank you, Dr. Suttie, for testifying again.
                              ----------                              --
--------

                                       Wednesday, January 28, 1998.

                                WITNESS

K. KIMBERLY KENNEY, THE CHRONIC FATIGUE AND IMMUNE DYSFUNCTION SYNDROME 
    ASSOCIATION
    Mr. Porter. K. Kimberly Kenney, executive director, the 
Chronic Fatigue and Immune Dysfunction Syndrome.
    Ms. Kenney.
    Ms. Kenney. Good afternoon, Mr. Porter. Thank you for the 
opportunity to appear before the subcommittee today.
    My name is Kimberly Kenney. I am executive director of the 
CFIDS Association of America.
    Mr. Porter. I am sorry we don't have the word 
``Association'' in here. I assumed it was missing for some 
reason, but it was just left out. I apologize.
    Ms. Kenney. Our association is the world's largest and most 
active charitable organization dedicated to conquering chronic 
fatigue and immune dysfunction syndrome, CFIDS.
    As you know, Mr. Chairman, CFIDS is a serious and complex 
disease characterized by incapacitating fatigue, persistent 
flu-like symptoms, intractable pain, and Alzheimer-like 
cognitive deficits. The cause has not yet been identified, and 
there is no cure or effective treatment.
    CDC estimates that half a million American adults and 
children suffer from strictly defined CFIDS. This committee, 
with your personal support, Chairman Porter, has provided 
leadership and vision through the Federal agencies which must 
meet the needs of persons with CFIDS.
    As I have been honored to do for each of the last 3 years, 
I come before you today to report that progress isbeing made in 
the understanding of CFIDS, but I also point out certain critical areas 
where there are problems.
    Many important signs of progress are outlined in my written 
testimony, and I wish to highlight just one, what I consider to 
be the most significant event of 1997, a public-private 
partnership to educate health care workers about CFIDS.
    This medical education program was produced by the Office 
of the Assistant Secretary for Health with collaboration from 
many Federal agencies and patient representatives. It was 
conceptualized and written by a team of patient advocates and 
staff from HHS, NIH, CDC, broadcast across the country by 
satellite by CDC, and has been continuously rebroadcast over 
the Internet. It is also available on videotape to health care 
providers.
    The CFIDS Association's partnership with HRSA's area health 
education centers resulted in 78 new satellite viewing sites 
where over 1,200 provider participants learned about the 
diagnosis and management of CFIDS. Federal officials, health 
care professionals, and advocates have recognized this program 
as an important first step in a broad-based medical education 
initiative.
    As a result of the satellite program and other Federal and 
private sector activities, public consciousness was raised this 
year and the legitimacy of CFIDS better established. But we are 
at a critical juncture. Unfortunately, Mr. Chairman, there are 
several areas in which the Federal effort has stalled. I should 
like to bring these to your attention now and request that you 
address these issues at the appropriate times during this 
year's appropriation hearings.
    First, in regards to the CDC's work on CFIDS, our 
intensified efforts over the past several months to track the 
use of Federal funds allocated to CFIDS research at CDC have 
been met with unclear answers that do not withstand close 
scrutiny. With support from the Office of the Assistant 
Secretary for Health, we have assurances that CDC will provide 
a complete accounting of CFIDS-related funds for fiscal year 
1996 and 1997 by February 28. Should CDC still fall short of 
providing full accountability for claimed expenditures, we ask 
that you raise this issue with CDC officials during their 
appearances before this committee this spring.
    The CFIDS program at NIH appears to have experienced a 
slight decrease between 1997 and 1998. Particularly in light of 
the 7 percent increase in NIH funding overall during that 
period, CFIDS funding is moving in the wrong direction. We have 
tried to verify this decrease, but the final funding numbers 
for fiscal year 1997, which were to be ready October 22 and 
then November 15, have still not been made available to us.
    A downward trend underscores the need for clearer direction 
from Congress. Over the past 5 years, the association and 
Congress have encouraged NIH to focus efforts and expand 
research. The focus has yielded scientifically sound 
investigations to pursue, yet the expanded funding has not been 
forthcoming.
    We understand the subcommittee's reluctance to earmark, but 
in light of this discrepancy between an increase in overall NIH 
funding and the erosion of CFIDS funding, we have no choice but 
to ask once again that you direct NIH to provide an additional 
$10 million for extramural grants.
    Persons with CFIDS continue to experience serious 
obstruction when seeking disability benefits from the Social 
Security Administration. These obstructions stem from lack of 
understanding by the Social Security Administration of the 
debilitating nature of CFIDS.
    While we were initially encouraged by meetings with SSA's 
Office of Disability, their interest has not been sustained. We 
ask the committee to direct the commissioner to appoint a task 
force to ensure both attention and follow-up to the task of 
educating SSA personnel at every level about CFIDS.
    Detailed requests on CDC, NIH, as I say, and HRSA are 
provided in my written testimony. Mr. Chairman, you are 
familiar with our issue, and I believe you will recognize some 
of these requests from past years. The association has strived 
to make consistent, reasonable requests, with the goal of 
providing greater clarification of issues critical to those who 
suffer from the disease. Using this strategy, we have been 
rewarded by the committee in many areas. However, as you can 
see, there are still great challenges ahead and your support is 
essential to overcoming them.
    Thank you for your efforts on behalf of people with CFIDS, 
for your time and attention this afternoon, and for your 
thoughtful consideration of our request.
    [The prepared statement of Kimberly Kenney follows:]


[Pages 398 - 406--The official Committee record contains additional material here.]



    Mr. Porter. Ms. Kenney, I get the message. There was a 
witness in this morning's session that testified in his own 
behalf and raised the question of the words that describe the 
disease. It started as Epstein-Barr virus, or chronic Epstein-
Barr syndrome, and has now been called CFIDS, and he is saying 
that we ought to change that. Do you agree? I thought he said 
that the association was working with him on this.
    Ms. Kenney. There is very broad-based support to change the 
name. I believe that the differences come in at what point it 
is appropriate to do so. I think most of the scientific 
community would prefer to wait until there is a scientific 
advance that would justify a change to another medically-based 
name. The patient community believes that they are stigmatized 
enough and would prefer that a name change occur sooner rather 
than later. We are trying to move the process along so that we 
can build consensus between both the patient and the medical 
communities.
    Mr. Porter. Am I correct that Epstein-Barr and CFIDS are 
one and the same, or am I not correct?
    Ms. Kenney. Epstein-Barr was originally thought back in the 
mid-eighties to be a potential cause of the syndrome. That was 
ruled out, I think, in 1988.
    Mr. Porter. So there is no connection?
    Ms. Kenney. Most doctors will tell their patients that you 
have high Epstein-Barr titers and therefore you must have 
chronic fatigue syndrome, which there is no relationship 
between the two.
    Mr. Porter. We thank you very much for your testimony 
again. It is nice to see you. I did get the message.
    Ms. Kenney. Thank you.
                              ----------                              --
--------

                                       Wednesday, January 28, 1998.

                                WITNESS

THOMAS A. GENNARELLI, M.D., THE COALITION FOR AMERICAN TRAUMA CARE
    Mr. Porter. Thomas A. Gennarelli, M.D., professor and 
chair, Department of Neurosurgery, Center for Neuroscience, 
Pennsylvania head injury center, Medical College of 
Pennsylvania, Hahnemann School of Medicine, Allegheny 
University of the Health Sciences, testifying on behalf of the 
Coalition for American Trauma Care.
    Dr. Gennarelli.
    Dr. Gennarelli. Mr. Chairman, I am very pleased and very 
proud to have the opportunity to provide testimony today on the 
importance of supporting injury prevention trauma and burn care 
activities across the U.S. Public Health Service.
    Although I am professor and chair of the Department of 
Neurology at Allegheny University, of the Health Sciences, I am 
here today as a member of the board of trustees of the 
Coalition for American Trauma Care.
    Injury or trauma is one of the most, if not the most, 
important public health problems facing the United States 
today. It is the leading cause of death for Americans from age 
1 through age 44, and more than 145,000 people die each year 
from injury, 88,000 from unintentional injuries, such as car 
crashes, fires, and falls, and 56,000 from violence-related 
causes. This relates to 400 deaths per day or 1 death every 3.6 
minutes.
    Of perhaps greater importance, injury is the most frequent 
cause of disability and loss of productivity. Millions of 
Americans survive injury each year, but many are left 
temporarily disabled, and some permanently disabled, with 
severe head, spinal cord, and extremity injuries. Because 
injuries strike the young disproportionately, injury is also 
the leading cause of years of lost work productivity, and at an 
estimated cost of $224 billion each year, trauma is our 
Nation's most costly disease.
    This is background. The Coalition would like to provide the 
subcommittee with funding recommendations for injury prevention 
and treatment in four Federal public health agencies--the NIH, 
CDC, HRSA, and AHCPR.
    Regarding NIH, the Coalition supports the Ad Hoc Group for 
Medical Research Funding's recommendation of a 15 percent 
increase in funding for the NIH for fiscal year 1999. However, 
the Coalition is concerned that as much of this increase as 
possible come from funds that are in addition to currently 
tightly capped discretionary accounts, so that other public 
health programs will not suffer.
    The Coalition also feels that some portion of this 
increased funding should be earmarked to enhance more trauma 
and burn care-related research. The Ad Hoc Group has called on 
the leadership of the NIH, with its extramural partners, to 
establish a process of consultation and planning to develop a 
comprehensive, creditable approach to allocating new resources 
based upon the most promising scientific opportunities and the 
most pressing public health needs.
    Given national injury statistics, it is hard to argue with 
the reality that injury ranks as one of the most pressing 
public health needs in the United States today. Yet despite its 
huge impact on American society, less than 1 percent of the 
total NIH funding supports any research on trauma, basic or 
clinical.
    The Coalition, as did a recent NIH trauma research task 
force, recommends increased funding for several resources 
within the NIH, including NIGMS, NIAMSD, NIAMSD, NINDS, NICHD, 
the National Center for Medical Rehabilitation, and the 
National Institute on Aging.
    The Coalition also supports an additional $20 million for 
CDC's National Center for Injury Prevention and Control to 
further its new initiative, Safe America, through injury 
control. This is the amount the Center needs to begin major 
implementation of proven injury prevention strategies, such as 
bicycle helmet use, trauma care systems, and residential smoke 
detectors.
    The Coalition also urges you to provide $8 million in 
fiscal year 1999 to fully fund the Traumatic Brain Injury Act. 
Traumatic brain injury is the leading cause of trauma-related 
death and disability and is the silent epidemic that compounds 
itself every year, but about which very little is still known, 
despite some of us spending morethan a quarter of a century in 
this research area.
    The Coalition has other recommendations that are contained 
in my written statement.
    The Coalition for American Trauma Care appreciates the 
support this subcommittee has provided to many trauma, injury 
prevention, and burn-related programs in the past. However, 
much remains to be done to address this leading public health 
problem so that we can achieve substantial health and social 
welfare cost savings through increased research regarding the 
timely treatment, rehabilitation, interventions, and prevention 
of trauma.
    The Coalition looks forward to working with you to achieve 
these goals and thanks you for the privilege of this august 
floor.
    [The prepared statement of Thomas A. Gennarelli, M.D., 
follows:]


[Pages 410 - 417--The official Committee record contains additional material here.]



    Mr. Porter. Perfect timing.
    Dr. Gennarelli, what is the relationship between the 
Coalition for American Trauma Care and the American Trauma 
Society?
    Dr. Gennarelli. The Coalition for American Trauma Care is 
comprised of numerous scientific organizations and is the voice 
for that group. The American Trauma Society has a different 
constitution.
    Mr. Porter. Is yours scientific and theirs patients, 
basically?
    Dr. Gennarelli. Essentially so, yes.
    Mr. Porter. I asked Mr. Teter, who represented them--and I 
am not sure you were in the room then--to break down between 
intentional and accidental trauma. What percentage falls in 
each group, do you know?
    Dr. Gennarelli. It depends on how you want to present it. 
If you want to take all patients who experience injury, you 
probably would say 80 nonintentional, 20 intentional. If you 
include those just who die, because gunshot wounds have a much 
higher mortality than other kinds of injuries, then the 
proportion gets to be more 60/40. The deaths last year were 
88,000 unintentional, 56,000 intentional.
    Mr. Porter. I see. Thank you very much for your testimony. 
We will do our best.
                              ----------                              

                                       Wednesday, January 28, 1998.

                                WITNESS

JOANNE PEASE, IMMUNE DEFICIENCY FOUNDATION, INC.
    Mr. Porter. Joanne Pease, Member, Immune Deficiency 
Foundation, Incorporated, testifying on behalf of the 
Foundation.
    Ms. Pease. Thank you for the opportunity to speak here 
today on behalf of the Immune Deficiency Foundation.
    My three sons and my nephew have primary immunodeficiency 
diseases, which means that they were born with incomplete 
immune systems. My name is Joanne Bakken Pease, and I am a 
volunteer with the Washington State chapter of the Immune 
Deficiency Foundation.
    As I tell my story today, I am mindful of the significant 
work being done by the Immune Deficiency Foundation on behalf 
of the approximately 40,000 individuals affected by these 
genetic disorders of the immune system. The IDF is developing a 
national registry of U.S. patients suffering from the most 
common of these disorders funded by a grant from NIAID. The 
registry is providing an important resource to physicians and 
investigators by giving them access to a more clinical 
understanding of these diseases.
    The clinical information contained in these registries will 
help determine the frequency of complications, long-term 
prognosis, and possibly open the gateway for gene therapy. As a 
mother of three affected children, I am proud of the work of 
the Foundation, and, in sharing my story, I hope to express to 
you the need for this work to continue.
    In November of 1985, my eldest son, Curtis, received his 
vaccine for measles, mumps, and rubella. Curtis got the mumps 
from this vaccine in February of 1986, and the doctor told me, 
these things happen. After 3 years of constant colds and 
pneumonia, Curtis was diagnosed with X-linked 
Agammaglobulinanemia. I was thankful when I learned there was a 
treatment for him. However, the treatment consisted of a very 
painful injection administered every 10 days. This treatment, a 
pooled plasma derivative, replaced portions of his incomplete 
immune system. However, the pain involved caused this therapy 
to be a source of terror in our household.
    When my second son, Jeff, was 10 months old, we learned he 
had contracted polio from the oral vaccine, signalling the 
presence of the same immunodeficiency. He was left with a 
withered right leg and a terribly deformed foot. Now both my 
beautiful boys receive these painful shots.
    Three years later, they both started getting their medicine 
intravenously. Intravenous immune globulin was less painful and 
more effective, and it reduced our infusions to once a month. 
Jeff has had 6 very painful orthopedic surgeries, including 
tendon transfers and releases, hip rotation, hip 
reconstruction, leg rotation, and ankle repositioning. He is 
now ready for his seventh and eighth operations, which will be 
complicated leg lengthening.
    My nephew, Joshua, was born in 1988 and my third son, 
Mitchell, in 1990. Both were diagnosed with XLA at birth and 
began their treatments.
    We have learned to cope with the care necessary to keep our 
children alive. However, issues related to the safety of the 
blood supply make me feel that my children are so vulnerable. 
Between the four boys, they receive 70 infusions per year.
    My children's lives are not what I envisioned for them. The 
pain that I feel for the loss of my dream will never go away. 
We need to continue the focus on medical research so perhaps 
future generations will have the option of gene therapy and not 
have to suffer years of chronic care.
    For fiscal year 1999, the Immune Deficiency Foundation 
recommends the National Institute of Allergy and Infectious 
Diseases receive a 15 percent increase over last year. This 
percentage translates into $202.7 million over fiscal year 1998 
and would bring NIAID's total appropriation to $1.55 billion.
    In addition, Mr. Chairman, I would like to make clear that 
although IDF strongly supports the concept of doubling NIH's 
overall budget in the next 5 years, we do not believe that 
these increases should come at the expense of other important 
Public Health Service programs.
    As you regard your decision to increase funding, please 
remember my boys and the approximately 40,000 primary 
immunodeficient patients affected by your vote.
    [The prepared statement of Joanne Bakken Pease follows:]


[Pages 420 - 425--The official Committee record contains additional material here.]



    Mr. Porter. Ms. Pease, I will remember your boys. My father 
had polio and had those same operations on his leg, or at least 
some of them that your son has had to undergo.
    Is this covered by insurance? How do you cope with the 
costs, in addition to the emotional problems?
    Ms. Pease. Our two boys have to be on a separate policy 
from my husband's group plan, because their costs are so high. 
The company does pay the premiums, and it is good insurance. 
For their infusions, we have had to go out of contract.
    Mr. Porter. Did you have any indication that there was 
anything wrong until they contracted these diseases?
    Ms. Pease. None; no family history. But, obviously, my 
sister and I are both carriers of this X-linked disease.
    Mr. Porter. Let me ask you, do you think NIAID is putting 
this at a high priority?
    Ms. Pease. I am not aware of the prioritizing. That is not 
my realm.
    Mr. Porter. Now that I think about it, that is an unfair 
question for you.
    Ms. Pease. I am hoping that it is up there.
    Mr. Porter. Thank you very much for your testimony.
                              ----------                              

                                       Wednesday, January 28, 1998.

                                WITNESS

MARIANNE PUCKETT, MEDICAL LIBRARY ASSOCIATION/ASSOCIATION OF ACADEMIC 
    HEALTH SCIENCES LIBRARIES JOINT LEGISLATIVE TASK FORCE
    Mr. Porter. Marianne Puckett, chairperson, Medical Library 
Association/Association of Academic Health Sciences Libraries 
Joint Legislative Task Force.
    Ms. Puckett.
    Ms. Puckett. Mr. Chairman and members of the subcommittee, 
I am Marianne Puckett, associate professor of medical library 
science at the Louisiana State University Medical Center in 
Shreveport, Louisiana. I appreciate the opportunity to testify 
today on behalf of the Medical Library Association and the 
Association of Academic Health Sciences Libraries regarding the 
fiscal year 1999 budget of the National Library of Medicine.
    First, let me thank you and the members of this 
subcommittee for your leadership in securing a 7.2 percent 
increase for the National Library of Medicine in fiscal year 
1998. Regarding the NLM 1999 fiscal year budget, I will address 
three issues: First, basic services and personnel; second, 
outreach; and third, access to health care information.
    As we approach the next century, the medical library 
community believes that basic library services must still be 
the foundation for NLM's long-term success as a service agency. 
Unfortunately, the level of demand for basic NLM services and 
the rate of increase in the cost of medical journals and books 
have both been in the 10 to 15 percentrange in recent years, 
far outstripping the library's budget increases.
    Moreover, NLM's level of staffing has remained the same 
over the past few years. Maintaining the current standard of 
acquisitions, indexing, cataloging, database searching, and 
lending will become more and more difficult, if not impossible, 
unless NLM's budget and level of staffing are increased to 
reflect these rising work loads and costs. As a result, we urge 
the subcommittee to consider the need for increasing support in 
both budget and staff positions so NLM can meet its increasing 
service needs and ensure the quality of its programs is not 
compromised.
    Second, NLM's outreach programs are of particular interest 
to MLA and AAHSL. These activities, designed to educate medical 
librarians and other health care professionals about NLM and 
the information services it provides, have proven to be 
extremely successful in improving the quality of our Nation's 
health care.
    Although NLM has educated a significant number of health 
care professionals through its outreach initiatives in the 
1990's, more work needs to be done in this area. There are 
still far too many health care workers in all parts of the 
country who are unaware that NLM and the National Network of 
Libraries of Medicine even exist. The need for a vigorous 
outreach program is now more important than ever.
    In 1997, NLM's database became available free over the 
Internet and Worldwide Web, opening them up to the general 
public and health professionals alike. NLM's outreach mission 
will not be complete until all who need access to science-based 
health knowledge are familiar with NLM and the information 
resources it provides.
    Third, Mr. Chairman, the National Library of Medicine 
continues to be the critical investment agency for increasing 
the public's access to health care information. This is 
especially true for people living in medically underserved 
areas. For example, my institution maintains several 
telemedicine and distance learning sites throughout rural 
Louisiana. With the support of NLM technology and NLM's 
invaluable programs, we provide access to health information 
and educational resources to some of our State's most at-risk 
citizens.
    In addition to support of telemedicine, NLM's High-
Performance Computing and Communications Initiative and free 
Internet Medline have empowered Americans with the ability to 
access the world's most expensive library of medical data 
directly from their own personal computers.
    The health sciences library community applauds Congress for 
its foresight in providing NLM with the necessary resources to 
develop these programs. There is no question that these 
technologies are having a profound influence on the delivery of 
health care across the country. To realize the full potential 
of these programs, though, it is crucial that Congress continue 
to provide NLM with adequate funding in fiscal year 1999.
    Mr. Chairman, with the endless advances of the Information 
Age, it is obvious that the National Library of Medicine will 
play a major role in delivering health care in the 21st 
century. Therefore, the Medical Library Association and the 
Association of Academic Health Sciences Libraries recommend a 
15 percent increase in funding for the National Library of 
Medicine in fiscal year 1999. This figure represents a $24 
million increase over fiscal year 1998 and would bring the 
Library's total fiscal year 1999 appropriation to $185.4 
million.
    In closing, I would like to make clear that although the 
medical library community strongly supports the concept of 
doubling NIH's overall budget in the next 5 years, we do not 
believe that these increases should come at the expense of 
other important Public Health Service programs.
    Once again, Mr. Chairman, thank you very much for the 
opportunity to testify this afternoon. I would be pleased to 
answer any questions you may have.
    [The prepared statement of Marianne Puckett follows:]


[Pages 429 - 435--The official Committee record contains additional material here.]



    Mr. Porter. Mrs. Puckett, thank you for your testimony.
    It seems that a number of our witnesses have put that 
disclaimer on at the end. I certainly understand it. I also 
don't want to get people's hopes up more than is justified by 
the fiscal situation in which we find ourselves. The first 
priority of the Congress will be to balance the budget, so that 
unless there are substantial increases in revenues of the type 
the President has proposed in his State of the Union Address, 
and will propose in his budget, I think it is going to be very 
difficult to reach the figure that all the witnesses have 
uniformly mentioned of 15 percent.
    That doesn't mean we are not going to do our best to 
attempt to do so, but it means it is going to be difficult. 
That is why I have focused everyone to say, let us look at the 
budget process first, because that is where the determination 
really is going to be made as to how far we can move the 
funding forward.
    Let me ask you a question. First, let me say that I visited 
an inner-city community health center in Chicago last year, and 
as I passed a television screen, there was the National Library 
of Medicine's Medline right there. And what you say about the 
availability of the latest technology and procedures to 
everyone in the health care services community, it really is 
true. They are doing wonderful things, and we are great fans of 
the National Library of Medicine.
    We have provided increases for NLM larger than the ones 
that they have asked for, but you are telling me that they need 
to increase their staffing. Does Dr. Lindberg agree with that? 
He has got the money to do so if he thinks he needs an increase 
in staffing, or at least we think he does. Would he agree that 
he needs more staffing?
    Ms. Puckett. Yes. He does. I think that they were still--
perhaps some of the funds that belong to some of the other 
programs, the HPPC, the initiative in working with that issue, 
they are still looking for more staff because of the increase 
in load.
    What the National Library of Medicine is actually taking on 
with all this increase of services, to do this, we need more 
and more people there so that a good job can be done and we can 
stay with the same level of excellence that you, and other 
Members of this Congress and the people at large know of what 
NLM does for them.
    Mr. Porter. Perhaps that will then be reflected in the 
President's budget figure for NLM this time. It has not been 
reflected in the past, obviously, and we have attempted to give 
them all the resources that they possibly need within their 
capabilities of doing that. We will certainly take a look at it 
and see if we can do a better job.
    Ms. Puckett. Thank you.
                              ----------                              

                                       Wednesday, January 28, 1998.

                                WITNESS

DAVID WHISTON, AMERICAN DENTAL ASSOCIATION
    Mr. Porter. Dr. David Whiston, the president of the 
American Dental Association.
    Dr. Whiston. Nice to see you, Mr. Chairman. Thank you very 
much for the opportunity.
    As you mentioned, I am here as the president of the 
American Dental Association and also as a practicing dentist 
across the river in Arlington, Virginia, although our 
headquarters are in Chicago, as you know.
    Certainly, with the passage of the State Children's Health 
Insurance Program, some Medicaid changes over this past year, I 
think we can safely say it has been the year of the child 
relative to health care in general, particularly relative to 
oral health care, and I certainly want to acknowledge the work 
that the subcommittee has done, you in particular, in enhancing 
support for issues of prevention and research and education.
    We think there are new opportunities this year, and we 
would specifically like to address the segment of the 
population that classically seems to fall through the cracks as 
these issues develop.
    Particularly in our field, we see about 25 percent, 
primarily of needy kids, who have over 75 percent of the tooth 
decay, the dental decay, that we see and treat in our offices 
every day. So we want to try and focus on that group.
    I would like to just, again, touch on three broad areas 
where we feel that that focus should take place, and, again, 
that is prevention, research, and education.
    On the preventive side, certainly the maternal-child health 
block grants, where you have been extremely supportive relative 
to the SPRANS activity, trying to enhance community water 
fluoridation initiatives, then as those initiatives develop and 
continue to outreach to the States and it is necessary for 
implementation, we certainly would speak for enhanced support 
of the Division of Oral Health within CDC; not only for 
fluoridation but also for, for example, other preventive 
measures, really proven, cost-effective measures such as 
placement of dental sealants, and we see that sealant 
utilization is just a touch under 30 percent. So we would like 
to see certainly increased activity there.
    Beyond prevention, I think we quickly enter into the 
research area, and research for us primarily means National 
Institutes of Dental Research; certainly need for increased 
support relative to the dental and craniofacial issues, that 
they continue to be on the cutting edge of research there but 
also, for example, some of the dramatic links we are seeing now 
between periodontal disease on the one hand and low birth 
weight infants on the other, periodontal disease and 
cardiovascular disease. Some of those issues really need 
increased research.
    On the education front, just to briefly touch on four 
particular items under that heading, certainly the general 
dental residency program, with particular emphasis on pediatric 
training, because that is where the greatest shortage is in the 
dental prevention; loan repayment programs, where received 
practitioners go to underserved area; the Ryan White HIV/AIDS 
reimbursement program; and, finally, the minority and 
disadvantaged programs. Those four areas, in particular under 
education, we would like to speak for enhanced support.
    All of these have been proven cost-effective ways of 
addressing deficiencies in the specific target areas. And 
certainly we realize, given all the testimony that we have 
heard, as you have heard today, that you have very difficult 
decisions to make with finite resources. We would ask for your 
continued great personal support for these particular areas: 
Prevention, research, education.
    Thank you for this opportunity to appear before you.
    [The prepared statement of David A. Whiston follows:]


[Pages 439 - 446--The official Committee record contains additional material here.]



    Mr. Porter. Well, Dr. Whiston, we very much appreciate your 
testimony. All of the areas that you have touched on are 
obviously priorities. The difficulty, as you point out, with 
our subcommittee is that there are so many important 
priorities, I think, for people under our jurisdiction. I won't 
repeat my sermonette again, but it is really where we must get 
some progress. And if we can, then we can address each of these 
areas in an even more forceful way than we have in the past.
    Dr. Whiston. We really, obviously, appreciate the dilemma 
and, again, certainly appreciate the great support that you 
have given our profession, but health care in general over the 
years. We really appreciate it very much.
    Mr. Porter. Off the record, I think that they ought to 
provide a perk to the president of the American Dental 
Association and allow you to spend a year in our great City of 
Chicago.
    Dr. Whiston. I would like that. I have tried to find ways, 
but they seem to like citizen soldiers in our profession, so I 
will continue to practice.
    Thank you very much.
    Mr. Porter. Thank you so much for appearing, for your 
testimony.
    The subcommittee will stand in recess until 10:00 a.m. 
tomorrow.
                                        Thursday, January 29, 1998.

                                WITNESS

ANNA STREET, NATIONAL JOB CORPS COALITION
    Mr. Porter [presiding]. The subcommittee will come to 
order.
    I have to remind witnesses that there are two provisions in 
the House rules that they must be aware of, and I'm talking 
about nongovernmental witnesses. In addition to their written 
statement, they must submit a curriculum vitae and a statement 
of Federal grant or contract funds that they or the entity they 
represent have received. If you have any questions about these 
rules, and whether they apply to your situation, or how to 
comply, please contact the subcommittee staff.
    I will also warn all the witnesses that the staff has a new 
innovation this year. Tony, why don't you hold that up? He's 
getting very tough on the time, and he'll be timing witnesses. 
The reason for it is that we have 200-plus public witnesses, 
and even at that, we are not able to accommodate all those 
people who wanted to testify. So we're going to have to be 
pretty strict about our five-minute time limit, and I think 
you're already probably aware of that.
    With that, our first witness is Anna Street, Center 
Director at Partners in Vocational Opportunity Training, 
testifying in behalf of the National Job Corps Coalition.
    Ms. Street.
    Ms. Street. Thank you very much. Thank you. Chairman 
Porter, members of the subcommittee, it's a great honor for me 
to speak before you today on behalf of Job Corps. As some of 
you may know, Job Corps gave me my second chance. I graduated 
from the Tongue Point Job Corps Center in 1968. I sit before 
you as a testimony of what Job Corps can do for a young man or 
woman with the determination and perseverance to take advantage 
of all that this program has to offer.
    Every day I see not only what the program can do for young 
people, but what Job Corps represents to them. It is a beacon 
of hope in an otherwise hopeless life. The PIVOT Job Corps 
Center is a pilot site of the Springdale campus located outside 
of Portland, Oregon. PIVOT stands for Partners in Vocational 
Opportunities Training and was established as a pilot in 1989. 
PIVOT is a specialized campus in that we serve exclusively 
young mothers and provide onsite child care for their children. 
Although to many people these young women are statistics, they 
aren't to me. They're young people with dreams just like you 
and me. Job Corps represents the only way for many to make 
these dreams a reality today. Let me tell you about these 
dreams.
    They are not about wealth or fame. They are about down-to-
earth values we've all been taught to treasure--a home, a 
family, a good job to make it happen. We take this for granted, 
but for the young people that go to Job Corps this is what 
keeps them going: the knowledge that through Job Corps they 
have a chance.
    Your support for this program has been instrumental to 
many. Your continued support for operational funds for Job 
Corps is indispensable. However, ever-increasing demands on our 
operational budget are made every day.
    Since 1993, every contract center's operational budget has 
been under a mandated ceiling of 3 percent a year. Much of Job 
Corps' services are noncontrollable costs such as food, 
clothing, medical services, utilities, and health insurance. 
Any cost increases greater than 3 percent are taken from 
controllable costs: staff, salaries, and wages. Generally, even 
city, county, and State governments allow between 5 and 6 
percent.
    Since 1993, we've added many student services requiring 
additional highly-qualified staff, such as the implementation 
of zero tolerance policies and the institution of a 13-week 
follow-up program to ensure that our students are successful 
once placed on jobs. Mr. Chairman, Job Corps is a labor-
intensive program. Each human life entrusted to us is 
individually guided through the program. Thus, the quality of 
services delivered to these young people, as well as their 
ultimate success, is greatly dependent upon the capabilities 
and quality of the staff caring for them. If we jeopardize the 
quality of our staff, we jeopardize the quality of our program 
and our product, which is to produce taxpayers, wise consumers, 
good parents, good employees, and, yes, future leaders.
    Diminishing numbers of staff at the national and regional 
levels affect the program's ability to oversee the increased 
services required by our students, as well as the expenditure 
of funds this committee entrusts to the program. I ask the 
committee to see what more can be done by the Department to 
ensure adequate coverage and oversight of Job Corps.
    The committee has supported the need to replace, repair, 
maintain, and build Job Corps centers. Just this past year, $4 
million was appropriated to start the process of incremental 
expansion. For that, we in the Job Corps community are truly 
grateful.
    As you know, the need for Job Corps has not abated. From my 
experience, there are ever-increasing numbers of young people 
that can benefit from this particular program. Mr. Chairman and 
members of the committee, you can make the difference, and you 
do. Your continued support for the establishment of new 
centers, satellites, and pilot programs like the PIVOT program, 
is critical if we're going to keep pace.
    Each new slot that you fund at a new campus represents a 
human investment, an investment in the health of our 
communities, free from poverty, drugs, and crime. And you know 
this is true because Job Corps proves itself with results year 
after year.
    Last year the committee also asked that the repair and 
maintenance process on centers be somehow expedited. I couldn't 
agree with you more and applaud your efforts in this area. 
There needs to be a cost-effective and time-efficient process 
established, possibly de-centralizing this activity at the 
contracting and administrative levels. There has to be a better 
way to ensure that centers don't remain on long waiting lists 
without knowledge of when repairs will happen.
    We've talked about the need to adequately fund and expand 
Job Corps. However, I've found that through my years in the 
program that if child care were available more extensively 
throughout the program, many more young parents, particularly 
young women, could take advantage of this second chance.
    Mr. Chairman, you and the members of the committee, 
recognized the importance of child care last year when you 
instructed Job Corps and Head Start to seek ways to work 
together. I agree. There needs to be a partnership between 
these two organizations.
    Currently, Job Corps has 19 child care facilities on 19 
campuses nationwide out of 115 centers. Most of these programs, 
like PIVOT, are offered as a service to nonresidential 
students, students who do not live on campus. They provide 
child care services for single parents enrolled in Job Corps, 
and I can tell you from my own experience in Oregon, young, 
economically-disadvantaged----
    Mr. Porter. If you can finish----
    Ms. Street [continuing]. Oh, okay--disadvantaged women face 
seemingly insurmountable challenges in daily life. So your 
support for this Job Corps program, which really does continue 
to serve young at-risk people, and help work in collaboration 
with welfare-to-work, school-to-work programs and continues to 
work with placing them in the workplace, it's very, very 
important.
    I thank you for this opportunity to testify before you 
today, and I ask that you remember that you've been given the 
power to make these dreams come true. Please remember Job Corps 
and the lives of its young people, their dreams, and their 
successes, because you often do--you really do--make the 
difference.
    Mr. Porter. Ms. Street, one of the things that you--all of 
the things you said, but particularly one of the things that 
you said struck me as absolutely critical for everything that 
we are privileged to fund. You said Job Corps proves itself 
with results.
    Ms. Street. Yes, sir.
    Mr. Porter. The money we invest in Job Corps proves itself 
in the lives of young people, and they are, in respect to our 
society, probably the most at-risk young people of all. We are 
great fans of Job Corps.
    Ms. Street. Thank you, Chairman Porter.
    Mr. Porter. As you probably are aware, in 1995 when we were 
required to make huge cuts in our budget, there were 10 
programs that we did not cut; one of them was Job Corps.
    Ms. Street. Thank you.
    Mr. Porter. Because we believe in it. The restraints which 
you're working under are restraints that exist in the law, so 
we can't do anything about that, but we can put it at the high 
priority that it deserves, and we will do our best to do that.
    Ms. Street. Thank you, Chairman Porter.
    Mr. Porter. Thank you for the wonderful job that you're 
doing.
    Ms. Street. Thank you. It's a pleasure.
    [The prepared statement of Anna Street follows:]


[Pages 452 - 457--The official Committee record contains additional material here.]



                                        Thursday, January 29, 1998.

                                WITNESS

DAVID HYDE PIERCE, ALZHEIMER'S ASSOCIATION
    Mr. Porter. Our next witness is David Hyde Pierce. He is 
the co-star of the NBC series ``Frasier.'' We're delighted to 
welcome ``Niles'' to our table. [Laughter.]
    I told him a minute ago that my wife, Catherine, and I have 
an opportunity to watch just two shows on television, in 
addition to the news, and one of them--and we are absolute 
regulars--is Frasier. So we're delighted to have you here, Mr. 
Pierce, and you're going to be testifying on behalf of the 
Alzheimer's Association.
    Mr. Pierce. Yes.
    Mr. Porter. Mr. Stenny Hoyer.
    Mr. Hoyer. Thank you, Mr. Chairman. I want to join you in 
welcoming ``Dr. Crane'' to the table. [Laughter.]
    Phyllis, I thought maybe you were representing ``Dr. 
Crane'' in your other hat with psychiatrists, but we're glad to 
have you here.
    Mr. Chairman, I have the opportunity to participate in 
press opportunity this morning with Mr. Pierce, a distinguished 
actor, as you know, a graduate of Yale, and he and his sister, 
Nancy, are here with us. He has a compelling story to tell. I 
said this morning that I was always very pleased that people 
who are celebrities, and therefore can focus attention on 
issues, some obviously spend their timefocusing the public's 
attention on what I would call the insubstantial--I guess that's as 
kind a word as I can choose for it--and some others, being a celebrity 
allows them to focus their attention on compelling issues concerning 
our society. Obviously, David Pierce is one of the latter, and we very 
much appreciate, Mr. Pierce, you and your sister being here. I know the 
committee looks forward to hearing your compelling story.
    Thank you, Mr. Chairman.
    Mr. Pierce. Thank you. I just have to say I'm honored to be 
here; I'm also a little apprehensive. I played John Dean in a 
movie a couple of years ago--[laughter]--and sitting in front 
of you all, I'm having terrible flashbacks. [Laughter.]
    But I'm here for a good cause, so I'm going to push 
through.
    Mr. Chairman, members of the subcommittee, I'm here on 
behalf of the Alzheimer's Association, but I'm really here on 
behalf of my family and the millions of families like mine 
across America. My grandfather died of Alzheimer's disease, and 
I was trying to think of a way to explain to you how awful that 
was, how devastating that was for my entire family, when I had 
the terrible realization that I probably don't have to explain 
it to you because Alzheimer's disease is now so widespread that 
every one of you knows someone, a family member or a friend, or 
a former colleague who is suffering with this disease. And so 
you already probably feel, as I do, that I cannot bear to see 
someone I love go through this ever again.
    That is why I'm here today, to ask you to invest an 
additional $100 million in Alzheimer's research at the National 
Institutes of Health to launch an immediate, all-out 
Alzheimer's disease prevention initiative, and I want to 
emphasize ``immediate'' because there is a time issue here. 
Researchers are telling us now that Alzheimer's disease begins 
attacking the brain cell by cell as much as 20 years before the 
onset of the symptoms we all associate with the disease. By the 
time the symptoms occur, it's too late; so much of the brain is 
destroyed, nothing can be done--20 years. That means that half 
of us in this room who may get Alzheimer's have that time bomb 
ticking in our heads right now.
    Four million Americans suffer from Alzheimer's now. If the 
disease goes unchecked, by the baby-boomers, our generation, 
reach the age of maximum of risk, 14 million Americans will 
suffer from the disease. Every one of them will lose their 
memory, their judgment, their ability to perform basic daily 
tasks. Every one of them will require full-term care. That care 
would be mostly provided by their families, and their families 
will be bankrupted emotionally, physically, and financially by 
that. I think that alone is enough for a compassionate nation 
to launch an all-out war on this disease.
    But there's another very compelling reason for Congress to 
do something now, and that is: you cannot save medicare and 
medicaid if you let 14 million baby boomers get Alzheimer's 
disease. Medicare spends 70 percent more on a beneficiary who 
has dementia than on one who doesn't, and almost half of 
medicare patients who have Alzheimer's also use medicaid 
because they've gone through all their resources, spending on 
average $47,000 a year on the long-term costs that medicare 
doesn't cover. So medicare and medicaid can't survive the 
onslaught of this disease.
    There's one more aspect of the time element that I want to 
convey. As there is a lag between the onset of the disease and 
the onset of symptoms, there is also a lag time between the 
beginning of research and the fruits of research. Now in the 
early nineties, Congress doubled funding for the Alzheimer's 
research of the National Institutes of Health. We are now 
today, this year, seeing the results of that investment with 
incredible discoveries every week coming out NIH-supported 
laboratories. The problem is, since 1992, funding has leveled 
off, and it's not keeping pace with the scientific 
opportunities. Scientists now know what they need to do in 
order to find a cure for this disease, and there isn't enough 
money at the NIH for them to do it. They have discovered simple 
treatments, like vitamin E and ibuprofen, which may slow or 
stop the progress of the disease, but they need to do large-
scale clinical trials in people my age to find out whether 
that's really an effective cure. They have to find clear 
biological markers, so we can identify people at risk, and 
treat them before the symptoms occur and it's too late. They 
have to develop laboratory models to check the progress of the 
disease and come up with more effective treatments.
    Finally, while we're researching a cure, we have to find 
better and more cost-effective ways to treat the people 
suffering from the disease for whom a cure will come too late. 
If we don't do this now, we will lose another generation, our 
generation, to this disease.
    For my family, for all of our families, I urge you to 
invest $100 million in Alzheimer's research at the National 
Institute of Health, and please do it now, because time is 
running out. Thank you very much.
    Mr. Porter. Mr. Pierce, three years ago, we had before this 
subcommittee as public witnesses a woman who was probably in 
her--she might have been 50 or 51 years old. She came and sat 
at the table there, and talked about her husband, who sat next 
to her. He had been a decorated Navy pilot and had then had a 
career as a test pilot following that, and she said that 
Alzheimer's came upon him at a very young age. He did not any 
longer know her most of the time, and he was maybe 55 years 
old. And she said, think about, if you will, with our life 
expectancies, we're going to have the rest of our lives in this 
situation, and what that devastation will do to each of us and 
our families and our children. I think that deeply touched--it 
certainly did me--every member of the subcommittee.
    This subcommittee puts biomedical research funding at the 
very highest level. I said a moment ago that there were only 10 
line items out of 800 that we raised three years ago when we 
had to make severe cuts to work toward a balanced budget. In 
that context, when the Budget Committee was suggesting we cut 
NIH 5 percent per year for five years, we raised NIH 5.7 
percent. The year before last, 6.9 percent; last year, 7.1 
percent, and I can assure you that this is absolutely one of 
the highest priorities that this subcommittee has--of any.
    We don't fund by disease, but we do fund by institute, and 
we don't direct science, but we sure do tell them what our 
priorities are. I think that you'll find that this subcommittee 
shares your deep concern and has, I hope, an understanding of 
the devastation that this disease causes, and, in addition, 
understands the opportunities that are there if we can reach 
out for them and provide NIH the resources that they need.
    So my promise to you is that we will do our very best to 
try to get those resources to NIH and have that job done.
    Thank you.
    Mr. Hoyer.
    Mr. Hoyer. Mr. Chairman, thank you very much.
    I know the committee--and to everybody in the audience, you 
had no prepared statement; you, obviously, in the first place 
were impacted by this, but as I pointed out at the beginning, 
not only are you personally affected, but taking that 
experience and, obviously, versed yourself in knowing what this 
is about and what can be done. Thank you very much for your 
dedication. Certainly on behalf of your grandfather, if you 
hadn't gone through the consequential impact of the Alzheimer's 
disease on your grandfather and your mother and her sister, 
which obviously devastated them, as well as your grandfather--
it is compelling testimony.
    Mr. Chairman, I'm going to have to leave. I apologize for 
that. I have another hearing--as you know, we have multiple 
hearings in multiple committees--that I need to do.
    As I look behind me, you would be amazed, I want to tell 
the witnesses, I had a fellow on loan from the Secret Service. 
There's a program of exchange. He was here and he sat in this 
room, and most of the time I wasn't here because I was in other 
hearings. I'm the ranking member on another committee. He said 
he learned more in the three months of hearings than he had 
learned in a lifetime. He was in his forties. So that these 
folks back here [referring to staff] are listening intently, 
and they are very compelling when they come back and tell us 
about the testimony. I'm always, Mr. Chairman, I know as you 
are, concerned that we can't all be at two or three places at 
the same time, so we could listen to the very compelling 
testimony, like David's, but so many others who are going to 
testify after.
    Thank you, Mr. Chairman. I thank all of you.
    Mr. Porter. Can I add one thing? Stenny said that it's 
important that people who are in the public eye, celebrities 
and the well-known, stand up for the things that are important 
to them and important to all Americans. I admire someone like 
you who comes up and lays before us your family's problems with 
this disease and catches the attention of the public and 
focuses on something that's so important to every person on the 
planet. So thank you for coming here to testify today.
    Mr. Pierce. Thank you.
    Mr. Porter. We very much appreciate it.
    Mr. Pierce. Thank you, Mr. Chairman.
    Mr. Porter. Thank you, Mr. Hoyer.
    [The prepared statement of David Hyde Pierce follows:]


[Pages 462 - 467--The official Committee record contains additional material here.]



                                        Thursday, January 29, 1998.

                                WITNESS

ROBERT WILSON, WILSON ASSOCIATES
    Mr. Porter. Our next witness is Robert Wilson, Wilson and 
Associates, testifying in respect to neurofibromatosis. Mr. 
Wilson.
    Mr. Robert Wilson. Thank you, Mr. Chairman, for the 
opportunity to present testimony on the need for a continued 
Federal commitment to research for neurofibromatosis, also 
known as NF, a terrible genetic disorder closely linked to 
cancer, brain tumors, and learning disabilities affecting over 
100 million Americans.
    I am Robert Wilson, president of Wilson Foundation. My 11-
year-old son, Michael, suffers from a severe case of NF. I have 
been working for many years with NF groups from around the 
country, the growing NF scientific community, Members of 
Congress, and the National Institutes of Health. I appear 
before you today on behalf of Michael and the 100,000 other 
Americans who suffer from NF, as well as the tens of millions 
of Americans who stand to benefit from NF research.
    As a result of your support for biomedical research, each 
year that I appear before your subcommittee I bring exciting 
news of a breakthrough in NF research that moves us closer to a 
treatment and cure for this terrible disease. Once again, I'm 
able to report to you a major breakthrough since last year 
which holds promise not only for the individuals suffering from 
NF, but also for the 100 million Americans who also suffer from 
NF-related diseases.
    Last spring, researchers at Cold Spring Harbor Laboratory 
and the Massachusetts General Hospital in Boston have 
determined for the first time that the NF gene in the fruit fly 
is linked to learning and memory disabilities. The studies show 
that the protein made by the NF-1 gene is part of the pathway 
which is known to control learning and memory, while at the 
same time still being implicated with NF's cancer-fighting 
tumor suppressor functions. The major breakthrough leads to new 
opportunities for drug and genetic therapies for NF patients, 
experiments which have already begun on the fruit fly. Cold 
Spring Harbor Laboratory stated in a recent newsletter that NF 
research stands to benefit ``a vast segment of the human 
population, including those afflicted with learning 
disabilities, Alzheimer's disease, and other dementias.''
    NF, incorrectly, but commonly known as the elephant man 
disease, involves the uncontrolled growth of tumors along the 
nervous system which can result in terrible disfigurement, 
deformity, deafness, blindness, brain tumors, cancer, and even 
death. It is the most common neurological disorder caused by a 
single gene.
    Dr. Samuel Broder, former Director of the National Cancer 
Institute, stated that NF was at the ``cutting edge'' of cancer 
research. This cancer connection was at the heart of two major 
conferences on NF held in October 1995 and July1997 at the Cold 
Spring Harbor Laboratory in New York, one of the world's leading cancer 
and neuroscience research laboratories headed by James Watson, the co-
discoverer of DNA. These conferences brought together basic 
researchers, clinicians, biotech, and pharmaceutical companies from 
around the world to find a treatment and cure for NF. After the first 
conference, more than 20 leading NF researchers worked for over one 
year preparing a detailed blueprint for finding a treatment for Nf. 
This document has been well received at NIH and many researchers are 
calling for this document to be used as a model for how NIH should fund 
further research.
    The enormous promise of NF research is its potential to 
benefit tens of millions of Americans in this generation alone. 
It has gained increased recognition from Congress and the NIH. 
For Fiscal Year 1999, I encourage the subcommittee to support 
the following four-part NF research agenda, which expands upon 
the advances made to date:
    One, increase appropriations for NIH. Sustained growth for 
the NIH is necessary to seize the tremendous opportunities 
brought about by previous research successes built past 
scientific achievements, address present medical needs and 
anticipate future health challenges. Toward this end, I 
encourage the subcommittee to support the recommendation of the 
Ad Hoc Group for Medical Research Funding, which calls for a 15 
percent increase in the NIH budget for Fiscal Year 1999. This 
represents the first step toward doubling the NIH budget over 
the next five years.
    Two, increase appropriations for NF research. In addition 
to holding the promise of improving the lives of tens of 
thousands of individuals who suffer from NF, recent research 
has demonstrated that NF research stands to benefit the 100 
million Americans who suffer from cancer, brain tumors, and 
learning disabilities. Therefore, I urge the members of this 
subcommittee to increase funding for NF research at NIH.
    Three, continue cooperation and coordination between NCI 
and NINDS through targeted NF research programs. In your Fiscal 
Year 1998 report, the subcommittee encouraged NCI and NINDS to 
coordinate efforts and to pursue an aggressive program in basic 
and clinical research. I applaud NCI and NINDS for the 
coordination that has occurred to date, and encourage the 
committee to continue to urge the continued expansion and the 
coordination for NF research.
    Four, target funding for the implementation of the clinical 
research initiatives generated at the Cold Spring Harbor 
Conference. As developed by Cold Spring Harbor Laboratory at 
its NF conference in October 1995, NF should become the model 
for scientist-initiated proposals to fund clinical treatment 
research for specific diseases which offer the potential for 
significant advances in broader areas, such as tumor suppressor 
genes.
    In closing, Mr. Chairman, with only a small investment, 
dramatic advances in NF research have been made with far-
reaching implications for many other diseases. Many of the 
world's leading NF researchers now believe that, with an 
increased investment, and a research agenda focused on all 
aspects of the NF research portfolio, from basic research in 
the labs, to drug development and genetic therapy, a treatment 
and cure for NF can be found in the next few years.
    I would like to end with a statement that appeared in a 
recent edition of the Cold Spring Harbor Laboratory newsletter 
which focused on major breakthroughs in NF research. The hope 
is that the day may come when doctors can flip critical 
switches to repair the broken circuits in each of these 
disorders. Such life-changing therapies will be the reward for 
years of enthusiastic basic research. I believe, Mr. Chairman 
and members of the subcommittee, that with your continued 
support, that they will soon be here.
    Thank you.
    Mr. Porter. Mr. Wilson, thank you for your testimony and 
for your working to draw attention to this disease, and to come 
here to urge us to direct more funds toward biomedical 
research. You are going to get my sermonette, but it's for the 
whole audience.
    Mr. Wilson. Right.
    Mr. Porter. And that is that I think that the desire to 
bring as much resources as possible to bear on biomedical 
research exists on this subcommittee. It's a high priority for 
us. The difficulty will be that in order to even think in terms 
of an increase in magnitude in that program or other programs 
outside of biomedical research under the jurisdiction of this 
subcommittee, we are going to have to have a budget allocation 
large enough, obviously, to accomplish that. The budget 
allocation comes through the budget process, which is under the 
jurisdiction of our Budget Committee in the House and the 
Senate. That's where the first action that could set the basis, 
the foundation, for the kinds of increases that the ad hoc 
committee is talking about occurs. So, in a sense, you're 
preaching here to the choir.
    Mr. Wilson. Sure.
    Mr. Porter. But don't overlook the need to also talk to 
members of the Budget Committee and tell them that this is a 
high priority for this country, and that we need the kind of 
allocation that will allow us to do the kinds of things that 
you and other witnesses have suggested and the ad hoc committee 
has strongly promoted.
    So we're willing. Give us the resources, and we can do 
great things, but we need help in getting those resources.
    Mr. Wilson. Right.
    Mr. Porter. I have to lay that sermonette on every witness 
group.
    Mr. Wilson. No, I agree with you, and I think if the 
members of the Budget Committee were to go up to NIH and meet 
with some of the heads of the NCI and NINDS, and so forth, they 
would see the enthusiasm that they have----
    Mr. Porter. Assuredly.
    Mr. Wilson [continuing]. And the breakthroughs that they 
are making on a daily basis. And they are so excited. They feel 
like this is ending a man to the moon. They are making--they 
have so much enthusiasm, and they're really predicting that 
treatment and cures are closer and closer.
    Mr. Porter. If you're focused on dollars--and we must be--
there isn't a better investment because it repays itself in 
health care costs saved in the future----
    Mr. Wilson [continuing]. Absolutely, absolutely.
    Mr. Porter. So many times over. If we can focus the Budget 
Committee on those two things, I think you're exactly right. So 
we're going to work on that. We hope you will also.
    Mr. Wilson. Yes, and as an example, my son has learning 
disabilities, and it's costing the school system an additional 
$60,000-$70,000 a year alone for one child.
    Mr. Porter. Exactly.
    Mr. Wilson. Those are big dollars for a school system to 
spend on a number of kids that obviously have a lot of 
different learning disabilities.
    Thank you.
    Mr. Porter. Mr. Wilson, thank you so much.
    [The prepared statement of Robert Wilson follows:]


[Pages 472 - 477--The official Committee record contains additional material here.]



                                        Thursday, January 29, 1998.

                                WITNESS

DR. NICOLE LURIE, SOCIETY OF GENERAL INTERNAL MEDICINE
    Mr. Porter. Our next witness is Dr. Nicole Lurie, MD, 
president of the Society of General Internal Medicine; 
professor of medicine at the University of Minnesota, 
testifying on behalf of the Society. Dr. Lurie, welcome.
    Dr. Lurie. Thank you. Good morning, Mr. Porter, members of 
the subcommittee, and your staff. Before I go into my prepared 
remarks, I'm going to ask you to step back for a moment and 
imagine yourselves 10 years from now, sick with a chronic 
illness, maybe even Alzheimer's disease. You have a lot of life 
ahead of you, and you want to spend as little of it as possible 
in the hospital. You're being cared for by a doctor who is 
being trained today. But that doctor hasn't been taught to care 
for your special needs in a home or outpatient setting, and 
worse yet, doesn't have at his or her disposal the best 
evidence about the most appropriate treatment that will lead to 
the best outcome for your disease. That's a real scenario, and 
one that will occur unless we fund AHCPR and title VII programs 
at a level that will let them do their jobs.
    I'm pleased to be here today on behalf of the Society for 
General Internal Medicine, an organization representing the 
nearly 3,000 physicians who are primary care, internal medicine 
faculty of every medical school and major teaching hospital in 
the United States. SGIM members prepare medical students, 
residents, and others to be primary care doctors for the 21st 
century, and they conduct research that improves patient care.
    Let me talk first about health professionals' training. As 
you know, medical practice has changed drastically over the 
last two decades, moving from a primarily hospital setting to 
the outpatient arena, and it will change even more in the next 
10 years. Unfortunately, our primary way of funding graduate 
medical education--that is, through medicare--provides little 
support to train outside the hospital. This is a major 
impediment to training physicians who are prepared to practice 
in current and future environments and manage the ever-growing 
population of patients with chronic illness that we're hearing 
about.
    This funding mechanism only works well if we want to train 
most doctors to practice in the past; I don't think we do. 
General internal medicine/pediatrics title VII programs provide 
the major source of funding for primary care training, 
permitting us to train health care professionals for the 21st 
century, and to train them to care for underserved populations, 
which will in all likelihood still be with us.
    SGIM is particularly proud of the track record of title 
VII-supported general internal medicine grant programs. Over 69 
percent of HRSA-funded internal medicine program graduates go 
on to primary care practice after graduation--nearly twice the 
rate of internal medicine programs without title VII funding. 
Over 40 percent of internists trained through title VII-
supported have established practices in medically-underserved 
communities in the past two years. You should know that the 
appropriation for general internal medicine programs in Fiscal 
Year 1998 was insufficient to permit the funding of new or 
competing renewal applications. While we recognize that your 
support has allowed these programs to survive at all, we urge 
you to fund title VII at a level that actually lets it get the 
job done.
    Let's shift gears for a moment and talk about AHCPR. As you 
probably know, the Agency for Health Care Policy and Research 
is one of three science agencies in the Federal budget that are 
necessary to maintain and improve the health of our Nation.
    We've just heard a lot about NIH, and the NIH budget is 
necessary to bring laboratory-based knowledge that will someday 
be translated to clinical application at the bedside. The CDC 
provides the science for public health. Despite this, you and I 
hear all the time the cries of alarm at the state of our health 
care system, and there's a serious disconnect here.
    It's the AHCPR that supports the discovery of new knowledge 
that can improve the health care system and can identify the 
highest quality, most cost-effective ways to getscientific 
breakthroughs into the health care delivery system in America. Yet, is 
it an agency that is seriously underfunded.
    Just like at the NIH, some of the best work comes from 
investigator-initiated programs, but inadequate funding means 
that the AHCPR can support only a very small handful of 
individual investigators. Many, like myself, no longer even 
bother to prepare grant proposals for the AHCPR because the 
funding prospects are so bleak. Since 1994, the AHCPR has cut 
the number of funded investigator grants by over 50 percent. 
Ultimately, this translates into denied opportunities for the 
American public, and for you, the Congress, to make wise policy 
choices and save money. It may mean that we don't have the 
evidence to best treat your problem ten years from now, and 
will have to rely on anecdote instead.
    On a positive note, let me give you a couple of examples of 
recent research released by the agency, because it is this type 
of research that both improves quality of care and cuts health 
care costs, that a funding increase could support.
    Middle ear infection is the most frequent diagnosis 
requiring antibiotics for children in the United States. AHCPR-
supported research at the University of Colorado found that 
common ear infections in children with less expensive 
antibiotics, instead of more expensive ones, could save 
millions of dollars a year without changing recovery rates. The 
study estimated that in one State alone, and one program alone, 
the Colorado medicaid program could have saved almost a half 
million dollars by implementing this change in treatment.
    Research supported by AHCPR also leads to the development 
of new technology that can be applied to make the functioning 
of the health care system more efficient. Recently, a tool to 
predict whether someone with chest pain is actually having a 
heart attack has been shown to reduce unnecessary coronary care 
unit admissions by 30 percent. This translates into 250,000 
fewer critical care admissions a year, keeping people out of 
the hospital, and about a $3 billion savings per year in the 
U.S.--by all standards, a great return on investment.
    Mr. Chairman, our funding recommendations for the title VII 
internal medicine/pediatrics programs is for $25 million for 
this year. This will allow for some growth within the program, 
but it will take closer to $50 million if you are really 
serious about getting the job done in the future. Our 
recommendation of $306 million for the entire title VII program 
reflects the recommendations of the Health Professions and 
Nursing Education Coalition.
    For the AHCPR, we will ask you to provide the funding 
necessary to repair the damage done over the past three years 
to the investigator-initiated grant program and to the training 
program. We recommend an AHCPR budget of at least $175 million, 
a $32 million increase. But, remember that in just one year 
example I've shown you how a modest investment translates into 
a gigantic cost-saving, in this example, of up to $3 billion. I 
think it's a great example of fiscal responsibility.
    I'd like to close by thanking you and your subcommittee for 
the strong support of the title VII programs and the AHCPR in 
the past. I look forward to your continued support in the 
future. I'd be pleased to respond to any questions. Thank you.
    Mr. Porter. Dr. Lurie, thank you for your testimony.
    Regarding AHCPR, you're probably aware that there are a few 
detractors in Congress on AHCPR, and that became a major issue 
about two-and-a-half years ago----
    Dr. Lurie. Yes.
    Mr. Porter [continuing]. And we felt that we had done a 
good job in getting them the resources that they ultimately 
were allocated. I think your testimony is exactly right, AHCPR 
does a wonderful job, and in the process it's bound to gore a 
few oxes that perhaps need goring. We ought to pay very close 
attention to the work that they do and give them adequate 
resources to do their job. So I think you're exactly right, and 
we'll do our best to both of those, both title VII and AHCPR.
    Dr. Lurie. Good. Thanks. As I'm even listening to this 
testimony this morning, I'm struck time and time again of how 
much promise there is and how much we need to separate out the 
promising things that actually work from the promising things 
that stay as promise in the future, and I think that's AHCPR's 
job. Thank you.
    Mr. Porter. I think you're right.
    [The prepared statement of Nicole Lurie follows:]


[Pages 481 - 494--The official Committee record contains additional material here.]



                                        Thursday, January 29, 1998.

                                WITNESS

DR. JOSEPH HOBBS, ORGANIZATIONS OF ACADEMIC FAMILY MEDICINE
    Mr. Porter. Dr. Joseph Hobbs, M.D., president of the 
Society of Teachers of Family Medicine and associate dean of 
primary care at the Medical College of Georgia, testifying in 
behalf of Organizations of Academic Family Medicine. Dr. Hobbs, 
welcome.
    Dr. Hobbs. Good morning.
    Mr. Porter. Good morning.
    Dr. Hobbs. Mr. Chairman, I'm Joseph Hobbs, M.D., associate 
dean for primary care at the Medical College of Georgia and 
president of the Society of Teachers of Family Medicine. I 
appreciate this opportunity to speak in support of critical 
funding of family medicine training and research.
    Mr. Chairman, this committee has been very supportive of 
health professions training in general and family medicine 
training in particular. We appreciate that support and hope 
that you will be able to sustain your efforts in the coming 
Fiscal Year. We ask that you continue to value family medicine 
training made possible by title VII funding, which helps to 
support an educational infrastructure that produces family 
physicians--these flexible, well-trained physicians whose 
broad-based training makes them especially qualified to serve 
in rural, innercity, suburban, and other settings, responding 
to the primary care needs of all populations.
    The organizations of academic family medicine have asked 
this committee to support these programs at a new authorized 
appropriated level of $87 million for section 747, family 
medicine training. There's good justification for this funding 
level because section 747 has facilitated the recent successful 
establishments of departments of family medicine in many 
medical schools. Third year required family medicine clerkships 
which we know influences the choice of primary care now exist 
in many more medical schools as a result of these programs. The 
vast majority of the residency training grants last year in 
family medicine met the funding preference to service the 
underserved, thus meeting congressionally-mandated health care 
service goals.
    Our recommended funding level is the result of a strategic 
plan developed by the academic family medicine organizations to 
maintain the production of family physicians needed to increase 
primary care access to all Americans. We further recommend the 
combined authority of $306 million for all health professions 
programs, equivalent to the amount this subcommittee and the 
House passed last year.
    In another measure of success, a GAO report stated that 
title VII was considered important in the creation and 
maintenance of family medicine departments, individuals, and 
medical schools. Another report stated that students who 
attended schools with adequately funded family practice 
departments and those with third year family medicine 
clerkships were more likely to pursue primary care careers.
    Title VII has helped build much of this needed family 
medicine training infrastructure. A number of years ago my 
institution was awarded an innovative training grant to develop 
an academic community partnership with a network of rural 
clinics in a four-county health professions shortage area which 
was economically depressed and unable to attract and keep 
private physicians. That grant contributed to the development 
of set of self-sustaining rural clinics which now serve as 
teaching sites for residents and students who provide care, 
along with teaching physicians, to a population in need. This 
rural health exposure of family medicine residents has also 
resulted in the successful recruitment of many of our graduates 
to practice in these and other rural communities throughout our 
State.
    Mr. Chairman, some argue that since medicare, GME funds, 
residency training through GME, there is no need for title VII 
funding. This is not the case. Medicare GME funding is directed 
to hospitals to defray the basic cost of training residents. 
Most of the title VII family medicine funding is directed at 
medical schools to help develop the primary care infrastructure 
in those institutions. Only one-third of the Nation's family 
medicine residents receive title VII funding, which, unlike the 
GME funds, goes to programs to develop innovative curricula, 
linkages with community training opportunities, faculty 
development, and to maintain the fiscal stability of those 
departments of family medicine.
    Studies underway indicate that the ratio of rural 
physicians to population, which has been declining steadily, is 
increasing for the first time in a half century. This change is 
almost entirely the results of an increased number of family 
physicians, which decreases the current rural physician 
shortages. However, sustaining these efforts is dependent upon 
adequate funding of family medicine training programs, of which 
title VII resources have been a critical part.
    Also of great concern to the academic family medicine is 
funding of the Agency for Health Care Policy and Research, or 
AHCPR, which has a mandate to support primary care and 
practice-oriented research. We ask that, as you contemplate 
expanded levels of support for the NIH, that you include AHCPR 
in that support. While our country has invested in basic 
medical science research through NIH programs, there has been 
little support to develop clinical applications of these new 
basic science findings. In order to support the critical 
practice-oriented primary care research, we ask at least an 
additional $25 million be targeted for the Center for Primary 
Care Research at AHCPR.
    In closing, I would like to express my sincere thanks to 
this subcommittee and to Chairman Porter and to Congressman 
Bonilla in particular, who have championed health professions 
funding, and request your continued support and efforts.
    Mr. Porter. Dr. Hobbs, thank you very much for your 
testimony.
    You're absolutely correct, Henry Bonilla has been a very, 
very strong advocate of the health professions, and I think the 
House has done a fairly good job of providing resources there.
    This is just a word of advice, but I think we have to 
concentrate on the U.S. Senate on this one. [Laughter.]
    When we go to conference, if their number is very low and 
ours is good, Dr. Lurie and Dr. Hobbs, you know, we don't 
necessarily end up at the stronger number. We will do our best. 
Henry has been a tireless advocate for the health professions, 
and I think that we'll have a decent opportunity within the 
limits of our allocation to do that here, but we need a little 
help on the other side of the rotunda.
    Dr. Hobbs. Thank you, sir.
    Mr. Porter. Thank you, Dr. Hobbs.
    [The prepared statement of Dr. Joseph Hobbs, M.D., 
follows:]
    [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.]


[Pages 498 - 503--The official Committee record contains additional material here.]



                                        Thursday, January 29, 1998.

                                WITNESS

BRUCE BAGLEY, AMERICAN ACADEMY OF FAMILY PHYSICIANS
    Mr. Porter. Bruce Bagley, M.D., board member, American 
Academy of Family Physicians, representing the Academy. Dr. 
Bagley, thank you for being with us.
    Dr. Bagley. Good morning, Chairman Porter. My name is Bruce 
Bagley. I'm a family physician from Albany, New York, and a 
member of the board of directors of the American Academy of 
Family Physicians. I appreciate your ability to move me on the 
schedule to follow Dr. Lurie and Dr. Hobbs because I think 
you're going to hear some very similar themes. We also have 
concerns about health professions funding and research.
    On behalf of the 85,000 members of the American Academy, 
I'd like to speak to you this morning about three issues that 
are important to our patients. First is appropriations for 
section 747 of the Public Health Service Act for family 
practice training. Second is appropriations for the Center for 
Primary Care Research at the Agency for Health Policy and 
Research, and, finally, funding for rural health programs.
    I also want to thank the subcommittee, and particularly Mr. 
Bonilla and yourself, for your support in the past for higher 
funding levels for the health professions.
    The academy strongly supports increased funding for section 
747. It is the only Federal program that provides targeted 
funding for family practice training programs. We urge you to 
appropriate $87 million to section 747.
    There's a shortage of generalist physicians. While most 
countries have at least a 50/50 split between generalists and 
subspecialists, the United States physician workforce is made 
up of more than 70 percent subspecialists and only 30 percent 
general physicians. Health planners believe that a physician 
workforce of at least 50 percent generalists and 50 percent 
specialists would best meet America's health care needs. 
Medicare policies currently provide incentives for hospitals to 
train physicians in subspecialties that are already in 
oversupply.
    Family physicians are needed to care for the everyday 
health problems of the American people. A study conducted by 
KPMG Peat Marwick in September of 1995 reported that medicare 
spending could be cut by at least $49 billion, and possibly as 
much as $270 billion, over the next six years if today the 
ratio was 50/50 for primary care. Family physicians are 
distributed in the urban and rural areas in the same proportion 
as the U.S. population as a whole. Even so, 149 counties in 
this Nation, represent 550,000 individuals, have no physician.
    Our track record is clear in this regard. Over 90 percent 
of physicians who complete family practice residency programs 
go on to provide frontline care for the citizens of this 
country where they need it.
    Section 747 works, as you've already heard. Funding for 
pre-doctoral programs under section 747 encourages medical 
schools to create required third year clerkships in family 
medicine. Clerkships are important because they expose medical 
students, who are mostly trained in hospitals, to real 
community practice.
    The American Academy of Family Physicians also strongly 
supports a primary care research agenda within the Agency for 
Health Care Policy and Research. The U.S. health care system 
has little emphasis on cost-saving preventative care. We see 
limited medical resources being consumed trying to rescue 
people from long-term illness or poor health habits. While 
American medicine is praised worldwide for its excellence in 
biomedical research, we have often failed to translate these 
breakthroughs into practical treatment that will apply to all 
patients.
    As you consider increases for the National Institutes of 
Health, and hear President Clinton's call for greater NIH 
funding, we ask that you also consider more dollars for AHCPR. 
This research will help me to better care for you and your 
family. The Academy requests that $50 million in additional 
appropriations be provided to AHCPR to support this crucial 
line of research.
    Finally, the Academy supports increased funding for rural 
health programs to ensure that all rural Americans receive the 
same health care as urban dwellers. These appropriations will 
allow more of our citizens to have a personal physician to 
provide the care they need when they need it and where they 
need it. As family physicians, we care for America, and we need 
your help to attract and train young physicians for this 
important work.
    Thank you.
    Mr. Porter. I very much appreciate your testimony, Dr. 
Bagley. I think your point that, regardless of what we develop, 
if it can't be brought to people, it doesn't do any good at 
all, is a very, very good one, and we certainly will take that 
into account in marking up this bill and trying to do the best 
that we can to fund the programs that you have testified in 
behalf of.
    Dr. Bagley. I'd like to follow up on Dr. Lurie's point that 
the rubber meets the road where the physician and the patient 
are in the doctor's office or in the community, and we really 
don't know whether many of the things that we're taught to do 
in medical school work well or not, or work as well as they 
could. So we're very anxious to see some good quality primary 
care research to help us do a better job every day.
    Mr. Porter. Thank you so much.
    [The prepared statement of Bruce Bagley, M.D., follows:]


[Pages 506 - 516--The official Committee record contains additional material here.]



                                        Thursday, January 29, 1998.

                                WITNESS

MARK WILSON, REPRESENTING HIMSELF
    Mr. Porter. Mark Wilson, the Rebecca Luckens Fellow in 
Labor Policy at the Heritage Foundation, testifying in his own 
behalf. Mr. Wilson.
    Mr. Wilson. Thank you, Mr. Chairman and members of the 
committee, for inviting me to testify on the appropriations for 
the Department of Labor. I'd like you to please accept my 
written testimony and enter it into the record. It should also 
be noted that my following testimony is my own view and does 
not necessarily reflect that of the Heritage Foundation.
    In Fiscal Year 1998, the Department of Labor's 
discretionary budget authority was $11.3 billion. The largest 
portion of this, two-thirds, went to employment and training 
programs. In response to requests from President Clinton, 
Congress has substantially increased spending on these programs 
over the past two years. Since Fiscal Year 1996, for example, 
the appropriations for the adult training has increased 25 
percent; summer youth training has gone up 39 percent; spending 
on programs for dislocated workers has increased 23 percent. 
Just last year, Congress also approved a new welfare-to-work 
program that will spend an additional $3 billion over the next 
three years.
    Yet, despite these huge increases, and the best labor 
market conditions in the country in the past 25-30 years, the 
President intends to ask for even more spending on jobtraining 
programs in Fiscal Year 1999. This year, before Congress appropriates 
any more funds for job training programs, it must ask itself a 
fundamental question: Why should we continue to spend taxpayer money on 
programs that don't work?
    The few rigorous studies that have ever been done thus far 
show either a record of failure or disappointingly small and 
fleeting benefits that don't justify the cost of the program. 
Even worst, many agencies do not know if their programs are 
even working or not.
    Reforming the current Federal job training system must 
involve more than just consolidation, which the House has 
recently passed and the Senate is going to consider this 
spring. Job training programs must be rigorously evaluated at 
every level, Federal and State, to ensure that future tax 
dollars that will not be squandered on equally ineffective 
programs.
    Congress and this committee should also exercise its 
authority under the Government Performance and Results Act to 
ensure that the Department of Labor includes a number of 
control group evaluation studies of job training programs that 
it administers in its strategic plan.
    Over the past 30 years, thousands of local job training 
programs, as well as hundreds of billions of dollars have been 
spent. Yet, only a few dozen job training programs have ever 
been subject to rigorous evaluation. The few studies that have 
been conducted generally show a failure--or generally fail to 
show any significant long-term increases in hourly earnings 
directly related to the training. A comprehensive study 
published just this last December in The Journal of Economic 
Literature concluded that there is a lack of compelling 
evidence that skills-building activities in these programs have 
actually enhanced the skills of the participants that are of 
value to employers.
    The only group helped by these programs apparently is adult 
women, and then only by a modest amount. The results for every 
other group, adult men and youth, are either nonexistent or 
negative.
    In another study, Professor James Heckman at the University 
of Chicago concluded from his research that, zero percent is a 
much closer approximation to the true rate of return of these 
Federal job training programs than the 10 percent that the 
administrators profess they do.
    The General Accounting Office, sadly--again, most agencies 
cannot even verify whether their programs are working, let 
alone keep track of the people that are in them. The U.S. 
General Accounting Office in 1995, for example, found that 
almost 40 percent of Federal job training programs could not 
accurately count how many people they served each year, and 
most programs lacked outcome data. Less than 50 percent of the 
programs collected data on whether or not the participants 
obtained jobs after they completed the job training program, 
and only 26 percent collected data on the wage that those 
people earned. Only a handful of programs knew whether 
participants would most likely achieve the same job placement 
outcome without the program.
    Despite the eloquent testimony of Anna Street earlier, a 
1995 GAO study was unable to verify the job placement of 15 
percent of the Job Corps sample that they had looked at, and 
found that over 22 percent of the Job Corps students dropped 
out of the program early. The high cost of the program, over 
$16,000 a year per student compared to $7,000 per year for a 
public college--that's room and board and tuition--and these 
disturbing results raise serious questions about whether or not 
Congress should continue to spend hard-working taxpayer dollars 
on this ineffective program.
    As Congress begins to focus its attention on reforming 
Federal job training programs, it should consider implementing 
a few common-sense solutions to improve the effectiveness of 
these programs for both the participants and the taxpayers. We 
need to implement control group evaluation studies, rigorous 
performance measures at the State and national level. These 
types of studies will tell Congress and the States and the 
taxpayers which programs are working and which ones are not. 
Those we find that do work, we should take a look at whether 
they can be expanded. Those that don't should be eliminated. We 
need to close down the programs that don't work, and we need to 
vigorously implement--Congress should vigorously implement--the 
Government Performance and Results Act.
    Thank you.
    Mr. Porter. Mr. Wilson, let me agree with a great deal of 
what you said. In fact, the focus of this subcommittee since 
I've been chairman has been results for people. If you can't 
get results in your program for people, why are we funding it?
    We have sent a letter this year to each of the Secretaries 
of the three departments over which we have jurisdiction and 
also all of the agencies over which we have jurisdiction, and 
told them that their testimony must focus on how their programs 
are working for people or not. That's exactly where we will be 
this entire hearing cycle.
    We have also invited GAO to come in to testify in respect 
to the programs in each of the three departments separately, 
and to lay out for us exactly what their view is of the success 
or lack of success in the programs under consideration.
    You, I think, are correct in saying that there's a lot of 
priority in the White House that differs from the priorities in 
the Congress, and when you come down to the finalanalysis, 
there's give and take in the conference, what will the President sign 
or what will he not sign, that we don't get a product that is 
necessarily just our view. We do the best, however, that we possibly 
can. The careers legislation has passed in the House of 
Representatives.
    Mr. Wilson. That is correct.
    Mr. Porter. I believe it is not passed in the Senate yet.
    Mr. Wilson. That's correct.
    Mr. Porter. And if it is passed, that will change the whole 
outlook, I think, for job training programs and make them a lot 
more efficient and a lot easier to evaluate, since there will 
very most certainly be a lot fewer of them to start with. So I 
think we share all of those goals.
    I will say, in respect to the Job Corps, that it is a high-
cost program per individual, but it takes kids who come from 
places where drug use and crime and poverty is at its highest 
and brings them out of that atmosphere into an entirely 
different environment, one that many of them have never 
experienced before, and puts a good deal of them on a path that 
they would otherwise have no chance of reaching. I think under 
those circumstances we look at Job Corps in the same--what 
results are you getting?--as any other program, but I think we 
have to understand, in respect to that one at least, that there 
is a different set of circumstances, and there is a value to 
hope. There is some value to hope for people. It may cost more, 
but if we can get results, if we can take those kids out of 
those environments and put them into a work environment where 
they keep a job, raise a family, put their kids on the right 
track, I think we've probably achieved a lot.
    Clearly, we share let's get results for people. I don't 
know when you were in here; you must have been here when Ms. 
Street testified, and I said to her, the line that you talked 
about proves itself with results; that's exactly what we're 
looking in every single Federal program, every single line item 
that we fund, we're looking for results. So we share your 
philosophy on that, and we'll do the best we can to achieve 
them.
    Mr. Miller.
    Mr. Miller. Thank you. I'm glad you're here today because 
we have very few people that raise questions. What studies are 
being done outside of the Department of Labor questioning the 
effectiveness and success of these programs? Maybe we need 
resources more into that. I know we require them to document 
their efforts.
    Mr. Wilson. Some States are currently looking into the 
prospect of conducting their own studies. Texas is one, for 
example. There are a number of other States that are looking 
into the possibility of conducting their own control group 
evaluation studies to determine whether their programs that 
they run that are funded in part through JTPA currently are 
effective.
    Most of the studies that have ever been done, and even the 
studies that are currently being done, have some Federal 
funding behind them in order to do them. These are not 
inexpensive studies to conduct. They're not expensive compared 
to the amount of money that we're spending, and the results 
that we have seen from these studies so far indicate that a lot 
of this money is being spent ineffective, and perhaps we should 
be evaluating. If we evaluated more programs, we could find 
those few that are working and build upon those, and more 
effectively spend our taxpayer dollars.
    But there are no independent studies outside of the 
Department of Labor or for the States that are currently being 
conducted in this area.
    Mr. Miller. Thank you. Thank you, Mr. Chairman.
    Mr. Porter. Thank you, Mr. Miller. Thank you, Mr. Wilson.
    Mr. Wilson. Thank you, Mr. Porter.
    Mr. Porter. We appreciate your testifying.
    [Prepared statement of Mark Wilson follows:]


[Pages 521 - 529--The official Committee record contains additional material here.]



                                        Thursday, January 29, 1998.

                                WITNESS

TERRY-JO MYERS, INTERSTITIAL CYSTITIS ASSOCIATION
    Mr. Porter. Terry-Jo Myers, Interstitial Cystitis 
Association national spokesperson, testifying in behalf of the 
Association. Ms. Myers, we're delighted to welcome you back----
    Ms. Myers. Thank you.
    Mr. Porter [continuing]. To our witness table. We're also 
delighted that you won twice last year on tour. That was very 
exciting. I'm a great fan of the LPGA. In fact, I have tickets 
already for the open at Black Wolf Run----
    Ms. Myers. Fantastic.
    Mr. Porter [continuing]. Up in Wisconsin. I have a son that 
happens to live about 25 miles away from there. So I'm going to 
be there the whole week.
    Ms. Myers. I could have gotten you tickets.
    Mr. Porter. Yes. [Laughter.]
    Ms. Myers. Maybe I couldn't have.
    Mr. Porter. Exactly. [Laughter.]
    Ms. Myers. You just buy them.
    Mr. Porter. Well, let me say one other thing. We understand 
that you're going to receive the Ben Hogan Award this year.
    Ms. Myers. Well, you're spoiling my whole speech.
    Mr. Porter. I shouldn't talk about that?
    Ms. Myers. No, go ahead. [Laughter.]
    Mr. Porter. Well, we just think that that is absolutely 
wonderful. We understand that they weren't going to award this 
award this year because of Ben Hogan's death, but that the 
comeback that you have achieved in overcoming this disease and 
getting a chance to exhibit your talent has turned them around, 
and that you're going to receive this award at the Masters' 
Tournament.
    Ms. Myers. Yes.
    Mr. Porter. So we congratulate you on that. We're delighted 
to have you back before our subcommittee to testify, and we 
wish you tremendous success on the tour this year.
    Ms. Myers. Thank you. Thank you. I hope I don't sound 
repetitive now.
    Again, thank you for giving me the opportunity to present 
my testimony here today. I would like to tell you about 
interstitial cystitis and ask you for continued funding of 
research to find a cure for this painful and debilitating 
disease.
    My name is Terry-Jo Myers, and I am a professional golfer, 
completing my 13th year on the LPGA tour. I also have IC.
    While today and every day I appear healthy to anyone who 
meets me, that is because the effects of interstitial cystitis 
are not visible to others. I can, however, assure you that my 
work, my family, and social life, and my pursuit of my dreams, 
have all been dramatically affected due to IC.
    Many of you may already know that my IC story has a happy 
ending, for I have been able to find relief. I'm here to give a 
voice to all those IC patients who are still too ill to leave 
their homes and cannot speak to you today.
    Interstitial cystitis is a chronic, inflammatory bladder 
condition. Its cause is unknown and there is no uniformly 
reliable treatment. The symptoms, which can be severe and 
unrelenting, include urgency and frequency of urination, up to 
60 times in 24 hours, and pain in the bladder. And the pain I 
describe, it feels like I would have had papercuts lining my 
bladder wall. It was quite painful.
    I was diagnosed with IC shortly after I developed symptoms 
at the age of 21, and I was told that nothing could be done. 
Doctors said, I would just have to learn to live with the pain, 
and that's the prescription that far too many IC patients still 
receive.
    Every step I took was painful, and for a tour player it was 
torture. Often, I could not even bend down to line up a putt. I 
would have to go to the bathroom as often as 50 times a day, 
including 15 to 20 times a night. I played in nonstop pain, and 
had constant anxiety about being able to make it to the next 
bathroom. Because travel is especially difficult for many 
people with IC, I would often arrive at tournaments exhausted; 
my friends would be out playing their practice rounds, and I 
would often be forced to remain in the locker room.
    The saddest of all for me personally is that IC has 
affected my golf game. As a junior athlete, I won many 
tournaments, but as a professional with IC, my performance was 
terribly hindered by the disease. Because LPGA rules prohibit 
players from leaving the course for any reason, I had to 
withdraw from many tournaments in the middle of a round because 
I needed to get to a bathroom. In 1988, I won the Mayflower 
Classic, but I attribute much of that win to the fact that we 
had two rain delays in the final round that allowed me to get 
to the bathroom and keep playing.
    I'm very happy to report that last season, as you've 
already mentioned, I did win the Los Angeles Women's 
Championship, as well as the Sara Lee Classic, finishing the 
season with over $300,000 in earnings, and I attribute much of 
that success to the oral drug Elmiron, which was recently 
approved by the FDA for marketing. Unfortunately, Elmiron 
provides relief in only about a third of the IC sufferers who 
try it.
    For me, last year was a dream come true. My story appeared 
in many newspapers and magazines across the Nation. I was 
featured in People magazine. I appeared on countless television 
shows to share my story of success.
    The most gratifying result of all this publicity beyond my 
own sense of achievement was the fact that the Interstitial 
Cystitis Association, the ICA, was able to reach out to more IC 
sufferers than ever before.
    In mid-December, I received the Heather Farr Award at the 
LPGA 1997 awards luncheon. This award, voted on by tour 
players, recognizes a player who demonstrates determination, 
dedication, and spirit through the game of golf. Heather Farr, 
who was a close friend of mine, died of breast cancer in 1993 
at the age of 28. As I told The New York Times, I never told 
Heather that I had IC, but watching her fight cancer helped me 
to continue my fight against IC. She fought her battle very 
public, and she was never angry or bitter, and I guess I just 
borrowed some of our strength. For that reason, that award is 
especially meaningful to me.
    And as if that weren't enough gratification for any 
athlete, earlier this month I did receive a letter from the 
Golf Writers' Association of America indicating that I had been 
voted the Ben Hogan Award. This award is presented annually to 
someone who has continued to be active in golf, despite a 
physical handicap or serious illness. This beautiful bronze 
statue of Mr. Hogan has been awarded to such golf heroes as Ken 
Venturi, Lee Trevino, and President Eisenhower. I will be 
attending the awards dinner in Augusta on Wednesday, the eve of 
the Masters' Tournament in April.
    Although I am immensely grateful for my reclaimed success, 
there are many, many others who have not been as fortunate. I 
have had IC for 14 years. It's been only six years since I was 
able to find a doctor to help me. This doctor has put me in 
touch with the ICA and motivated me to take steps to begin to 
cope with my illness. This doctor was also aware of Elmiron and 
made sure that I was able to take the Elmiron.
    Not all IC patients can say this. Many can't travel, work, 
or meet their family obligations, and many become financially 
destitute as they lose their health insurance coverage and try 
to keep up with their IC treatment. Some have their bladders 
removed, only to encounter a whole array of medical problems.
    My success story is not one that all IC patients can claim, 
and that is what motivates me the most. Because it is 
comparatively a rare disease that affects mostly women, and 
historically neurology and neurological research have focused 
primarily on male urological problems, interstitial cystitis is 
a disease that continues to be ignored by many members of the 
medical community. It is serious and it can be costly.
    An epidemiological study, sponsored by the Urban Institute, 
found that an estimated 450,000 people in theU.S., men and 
women both, may suffer from IC, with an economic impact as high as $1.7 
billion per annum.
    Fortunately, there is hope. Thanks to previous 
congressional funding, the NIDDK built the IC database, an 
extensive pool of IC patient information collected at nine 
sites around the U.S. and stored and analyzed at the 
Pennsylvania State University Hershey Medical Center. The 
researchers have already begun to publish reports analyzing 
data obtained from this study, with the expectation that the 
database will provide clues as to how IC develops and to 
diagnose and categorize patients and how to treat their disease 
more effectively. In short, the database has provided the first 
systematic, long-term look at a large number of IC sufferers.
    Thanks to your support, the IC database is now moving into 
phase two, which will test and study new treatments for IC. The 
Interstitial Cystitis Association and all IC patients are very 
grateful to all members of this subcommittee, and in 
particular, to Chairman Porter and Congressman Bonilla, your 
ongoing support, your support of the IC research and other 
urological diseases. Without your help, we would be nowhere in 
our struggle. Because of your commitment, we are beginning to 
see some progress.
    In conclusion, to continue this research initiative, we 
request that the committee provide additional funds to the 
urology program of the NIDDK in Fiscal Year 1999 to be used for 
expanding the variety of investigators doing research on IC. 
These funds should be used to support further research 
specifically into IC. Proposals should be solicited through a 
series of requests for applications, RFAs, for individual 
research grants and pilot studies which would look into, one, 
new strategies for IC symptom relief; two, epidemiology, and, 
three, further understanding the basic science of IC.
    The committee requests that the NIDDK prepare a report of 
ongoing research studies and areas for research solicitations, 
demonstrating where advances can be made in the effective 
treatment and prevention of IC. We still have far to go; yet, 
we are confident that with your help, and with adequate 
continued funding for IC research through the NIDDK, results 
will be no less than miraculous.
    As a victim of IC, I know what it is like to endure the 
chronic, unrelenting pain, and please help us to end this 
suffering and help us to find a cure for this horrible disease.
    Mr. Porter. Thank you for coming to testify before our 
subcommittee once again. We had earlier this morning David Hyde 
Pierce. I don't know whether you got a chance to see him. 
That's Dr. Niles, Frasier----
    Ms. Myers. No.
    Mr. Porter [continuing]. Co-star of the Frasier series. We 
said to him that people who are in the public eye, celebrities 
like yourselves, really do a wonderful service in focusing this 
country on these kinds of problems. He testified on Alzheimer's 
disease which affected his family.
    I want to commend you for standing up and riveting public 
attention on this disease and what we can do to help other 
people that have it.
    Ms. Myers. Thank you.
    Mr. Porter. Obviously, you don't have to do that, but 
you're making a difference in others' lives, and we appreciate 
that very much.
    Now should Casey Martin be able to ride in the cart or not? 
[Laughter.]
    Ms. Myers. Yes, I think he should be able to ride in a 
cart, absolutely.
    Mr. Porter. Is that the feeling on the tours, that that's 
okay?
    Ms. Myers. I would go out on a limb and say that is the 
feeling of the players, yes. If he is good enough to play golf 
on a professional level such as the PGA tour, I would never 
deny him the right to play.
    Mr. Porter. Then why shouldn't you have been allowed to 
leave the course?
    Ms. Myers. I was not as smart as Mr. Martin. I did not 
think about that. However, it's a very interesting situation, 
his lawsuit.
    Mr. Porter. Yes.
    Ms. Myers. I will follow it.
    Mr. Porter. It's ready for trial or starting trial very 
soon, is it not?
    Ms. Myers. February 2.
    Mr. Porter. Yes, yes.
    Ms. Myers. Yes.
    Mr. Porter. Mr. Bonilla.
    Mr. Bonilla. I'd just like to, very briefly, second what 
the chairman said about your appearance here and your 
appearance in previous years, you as a person. It's admirable 
that you're what you're doing and taking all this time. You've 
got a lot of success now. You could be doing a lot of other 
things, working on your game, traveling around the country----
    Ms. Myers. I do need to do that.
    Mr. Bonilla [continuing]. And I know that's important, but 
the fact that you take personal time as a volunteer to come 
here to help those that may be affected in the future by IC is 
really a testament to you as a person. I just think that should 
be pointed out again.
    Ms. Myers. Thank you. I will never let myself forget the 
pain and all of the anxiety, that I lived with thisdisease for 
the 11-plus years that I was in so much pain. If I allow myself to 
forget that, then I may not take the responsibility I need to take with 
this disease.
    Mr. Porter. Ms. Lowey.
    Mrs. Lowey. Thank you, Mr. Chairman. I want to join our 
chairman and my colleague in welcoming you here, and associate 
myself with the remarks that you've heard, how important it is 
to be an advocate. I want to particularly welcome a constituent 
of mine, Laurie Fishfein, who is also here, whose daughters 
have suffered greatly from the disease.
    We're aware that this does affect primarily women----
    Ms. Myers. Yes.
    Mrs. Lowey [continuing]. And we join you in your optimism 
that we can end in the pain, we can find a cure, we can prevent 
the suffering that so many people go through.
    I just want to assure you that there is a great deal of 
support in this committee, and that your personal testimony and 
that of Mrs. Fishfein and others does make a difference. We are 
often pulled in so many different directions, and I am very 
pleased that there seems to be in this Congress, in this 
country, great support for the National Institutes of Health.
    Ms. Myers. Yes.
    Mrs. Lowey. We can assure you that we're going to work to 
increase those dollars, increase the dollars for research for 
this disease, and we thank you again for your participation 
here this morning.
    Ms. Myers. And thank you for your tremendous support. Thank 
you.
    Mr. Porter. Thank you, Ms. Lowey.
    Now have you played the River Course at Black Wolf Run?
    Ms. Myers. No, but I've watched the Anderson Consulting 
Match Play. I've watched it very carefully.
    Mr. Porter. Well, you'll love this course, and it might be 
a great place to win your first U.S. Women's Open.
    Ms. Myers. That would be fabulous, and remember, you bought 
the tickets.
    Mr. Porter. I did; I'll see you there. [Laughter.]
    Thank you so much for being with us.
    Ms. Myers. Thank you, Mr. Chairman. Thank you.
    [The prepared statement of Terry-Jo Myers follows:]
    [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.]


[Pages 536 - 540--The official Committee record contains additional material here.]



                                        Thursday, January 29, 1998.

                                WITNESS

ERIN BOSCH, PRIVATE CITIZEN, REPRESENTING HERSELF
    Mr. Porter. Erin Bosch, a private citizen, testifying in 
her on behalf. Ms. Bosch, it's nice to welcome you back again.
    Ms. Bosch. Thank you.
    Mr. Porter. Thank you for testifying.
    Ms. Bosch. Mr. Chairman, members of the subcommittee, I'm 
honored to have the opportunity to speak to you today. My name 
is Erin Bosch, and some of you may recall that I addressed you 
last year on behalf of the National Coalition for Heart and 
Stroke Research. Today, I'm here to represent not only myself, 
but the 32,000 children in the United States who are born with 
congenital heart defects.
    Most of us are aware that heart disease is the No. 1 killer 
and a leading cause of disability in adults in this Nation, but 
few recognize that heart defects are the most common birth 
defect of the newborn. Of the 32,000 children born each year 
with heart defects, around 2,300 die before their first 
birthday. The rest of us live with the consequences of heart 
disease, and many have their lives cut short from heart 
failure.
    Thanks to past funding for heart research, about 1 million 
Americans who were born with heart defects are alive today. 
While we are grateful for each day to be alive, we, unlike 
other healthy children, have not been able to experience what 
it's like to run the length of a soccer field without 
struggling for our next breath, nor have we experienced the 
thrill of running down the basketball court to score the 
winning basket.
    I was born with genetic heart disease, called hypertrophic 
obstructive cardiomyopathy. This disease has caused the heart 
muscle to overgrow and block the flow of blood in and out of my 
heart. It also affects the valves of my heart, causing the 
blood back up in the wrong direction. This diseases causes high 
risk for heart attack and sudden death from dangerous heart 
rhythm.
    One year ago in October, I was at the Mayo Clinic having 
open heart surgery. This procedure, called a septal myectomy, 
is designed to shave away a portion of the heart muscle that 
causes the obstruction. This procedure was originally pioneered 
at NIH's National Heart, Lung, and Blood Institute, and was my 
last resort, aside from transplantation.
    It is funding that this committee has provided that has 
allowed this type of successful research. Without this funding, 
my option of a healthier lifestyle would not have been possible 
for me. I'm one of the lucky ones. My surgery was successful, 
and after one month at Mayo, I was able to return home.
    There have been some advances for children like me, 
although many still die prematurely. Most people think 
heartdisease is a problem that only affects older people, but I'm 
living proof they are wrong.
    According to recent studies, 36 percent of young athletes 
who die suddenly have undiagnosed hypertrophic cardiomyopathy. 
Presently, there are at least 35 different types of recognized 
congenital heart defects affecting the newborn population. Some 
can be corrected surgically; others cannot yet be repaired, and 
these children die. One of these children might one day be your 
child or grandchild.
    I have great faith in the determination of our scientific 
researchers who work day and night to find new treatment 
methods for those who suffer with illness or disease. I also 
have great faith in you as doorkeepers of governmental funding 
for the National Heart, Lung, and Blood Institute to provide 
the necessary funds for children who, through no fault of their 
own, have been born with heart defects.
    Thank you for the opportunity to speak to you today. I'm 
confident that you will not forget me and the other young 
people like me who depend on you for funding for this vital 
research. We, too, desire to live long and productive lives.
    Mr. Porter. Ms. Bosch, thank you for your very compelling 
testimony, and I think I can assure you, on behalf of the whole 
subcommittee, that we definitely will not forget you and other 
young people, and we'll do our very best to put this funding 
into high priority and to make the kinds of increases that can 
really make a difference in people's lives in the future.
    Thank you for coming here to testify.
    Ms. Bosch. Thank you.
    [The prepared statement of Erin Bosch follows:]


[Pages 543 - 545--The official Committee record contains additional material here.]



                                        Thursday, January 29, 1998.

                                WITNESS

JUDITH DESARNO, NATIONAL FAMILY PLANNING AND REPRODUCTIVE HEALTH 
    ASSOCIATION
    Mr. Porter. Judith M. DeSarno, president and CEO, National 
Family Planning and reproductive Health Association, 
representing the National Family Planning and Reproductive 
Health Association.
    Ms. DeSarno. Good morning. My name is Judith DeSarno, and I 
am the president and CEO of the National Family Planning and 
Reproductive Health Association, a nonprofit membership 
organization dedicated to promoting and protecting access to 
family planning and reproductive health care for all women, 
men, and their families.
    Thank you, Chairman Porter and members of this 
subcommittee, for affording me the opportunity to testify 
before this subcommittee. I would like to concentrate my 
remarks on increased funding for title X, our National Family 
Planning Program.
    This program was founded 27 years ago to help lower 
unintended pregnancy rates and the lower the incidence of 
infant mortality and morbidity. I am here today with good news: 
that the rate of unintended pregnancy in the United States has 
begun a well-documented decline. According to the latest data 
analysis from the Alan Guttmacher Institute, the rate of 
unintended pregnancies fell by 16 percent between 1987 and 
1994. This drop has been attributed largely to higher 
contraceptive prevalence and the use of more effective methods 
of contraception. The decline in unintended pregnancies has 
also lowered the abortion rate. This is all very good news. 
Family planning works. One can only wonder how much greater a 
decline there would be if every woman who wished it were able 
to have access to affordable, reliable contraception.
    The administration will be affirming its commitment to 
title X by requesting an additional $15 million for the program 
in its Fiscal Year 1999 budget. While title X has received 
small increases in recent years, thanks in large measure to 
your leadership, Mr. Chairman, and the strong support and 
leadership of Mrs. Lowey and Ms. Pelosi, funding has not kept 
pace with inflation or need. If title X funding had kept pace 
with inflation since 1980, it would today be funded at almost 
$500 million instead of its current funding level of $203 
million.
    Unfortunately, health care costs did continue to rise. For 
example, in just the last five years, the cost of oral 
contraceptives, the most popular method of reversible 
contraception in this country, has tripled for virtually all 
title X clinics.
    If one patient desires Depo-Provera, an IUD, or Norplant, 
the most effective and long-lasting contraceptives, many other 
patients may go unserved because of the high cost of these 
methods.
    Title X family planning professionals are being asked to do 
more with fewer resources. The increase of $15 million would 
allow us to provide many more women and men with family 
planning services; expand outreach efforts to reach hard-to-
reach populations such as the homeless and the drug-addicted; 
expand weekend and evening hours to make services more 
accessible to patients; expand programs to involve males, who, 
after all, are half of the equation; provide more screening and 
treatment for sexually-transmitted diseases.
    Family planning works. We know that postponing that first 
birth beyond the teenage years and allowing families to space 
their children is the most important precursor to healthy 
children and families.
    We know that increased access to contraception is bringing 
down the unintended pregnancy rate and the abortion rate.
    We also know that we must all work together to lessen the 
need for abortion. I am here today to urge this committee to 
join all people concerned with the health of women and their 
families--abortion supporters and abortion opponents alike--to 
join us in making sure that all women have the opportunity to 
plan their pregnancies.
    Mr. Chairman, we have the dramatic news this morning that 
there was a bombing at a women's clinic in Birmingham today 
with at least one person dead. We must end the violence. Wemust 
stop demonizing personal choices, and we must work together to find 
preventive measures.
    Thank you.
    Mr. Porter. Ms. DeSarno, thank you for your testimony. I 
couldn't agree with all of it more. It is good news that 
unintended pregnancies are down in the United States. It would 
be even better news if they were down all across the world.
    Ms. DeSarno. I think it's important to note that the United 
States still has, in the industrialized nations, the highest 
unintended pregnancy rate. So we're not really----
    Mr. Porter. We're not there yet.
    Ms. DeSarno [continuing]. Doing enough in this country 
either.
    Mr. Porter. I've just learned of a new program called 
Educate America that has enlisted Charlton Heston, Edward James 
Olmos, Morgan Fairchild, and others, and is intending to bring 
the message of the importance of family planning and 
contraception back to the American people, where it seems to 
have been missing for such a long time. Are you aware of this?
    Ms. DeSarno. I am not aware of it. That's very good news, 
Mr. Chairman.
    Mr. Porter. Well, I think it is the kind of thing that is 
really needed. In my judgment, there is a concerted all-out 
attack on family planning that in a way hides behind the issue 
of abortion that I think is unrelated. Abortion is not an 
acceptable method of family planning, in my judgment. 
Contraception is what we should emphasize, and yet we have got 
these issues bound together, very unfortunately. I think that 
those who believe that family planning is a personal human 
right for every father and mother and family really have to 
focus on this, and this Educate America program seems to me to 
be a way to do that.
    Edward James Olmos is a personal friend. He's stood up for 
many causes that he believes in, including innercity kids who 
are highly at risk in our society, and reached out to them. I 
think this kind of leadership from celebrities--we've had a 
couple of celebrities here today--but I think it can make the 
difference in respect to family planning as well, and I would 
urge you to give them all the support you possibly can.
    Ms. DeSarno. Oh, absolutely. We know that the American 
people, by an enormous percentage, support family planning. 
Ninety percent of Americans polled say they support family 
planning, and a majority also support Federal funding for 
family planning.
    For years, I have felt that we need to undemonize or take 
out of the political rhetoric family planning. I know that 
Members of Congress often reflect where they think their 
constituents are. Their constituents strongly support family 
planning, and it seems like a step in the right direction. 
Title X is there ready to serve all those many women who have 
no access to family planning, if we can get that funding up.
    Mr. Porter. Looking at how close the votes have been on 
title X indicates that the message isn't getting through from 
the constituents to the Members. We've got to do a much better 
job of that.
    Ms. DeSarno. I absolutely agree.
    Mr. Porter. Thank you for your testimony this morning.
    Yes, Ms. Lowey.
    Mrs. Lowey. Thank you, Mr. Chairman, and I just want to 
associate myself with your remarks, and thank you for coming 
before us today. I'm particularly pleased that you emphasized 
that family planning works.
    I do hope, Mr. Chairman, that those of us who are pro-
choice, those of us who are anti-choice, can unite and work 
together to focus on the importance of family planning. You 
mentioned, and I'd just like to emphasize again, that family 
planning reduces the need for abortion. Whether one is pro-
choice or anti-choice, we all agree that we have to reduce the 
need for abortion.
    I know in this committee many of us are focused on 
increasing investments in contraceptive research, providing 
access to women to contraceptives, so they can plan their own 
families. I'm also hoping that the responsibility of other 
committees--that we can all work together to make sure that the 
insurance companies provide coverage for contraceptives if, in 
fact, they provide coverage for other prescription drugs.
    So the focus should be on contraceptives, family planning, 
and I am cautiously optimistic that we can convince our 
colleagues to continue to increase our investment in 
contraceptives and family planning, because this really has to 
be the key to preventing unintended, unwanted pregnancies.
    I thank you again for your important work. We look forward 
to working with you.
    Ms. DeSarno. Thank you, Ms. Lowey. No one has done more on 
the complete answers to preventing unintended pregnancy than 
Mrs. Lowey, and I salute her for that.
    If we'd had longer than five minutes, I have a statement of 
increasing to $20 million research for contraceptive research. 
We must--the challenge for all of us, pro-choice or anti-
choice, is to work together to lessen the need for abortion. I 
think it's a moral imperative for all of us.
    Thank you.
    Mr. Porter. Thank you, Ms. DeSarno.
    [The prepared statement of Judith DeSarno follows:]


[Pages 549 - 557--The official Committee record contains additional material here.]



    Mr. Porter. This subcommittee will stand in recess for five 
minutes.
    [Recess.]
                              ----------                              

                                        Thursday, January 29, 1998.

                                WITNESS

SUSHMA D. TAYLOR, CENTER POINT, INC.
    Mr. Porter. The subcommittee will come to order.
    Sushma D. Taylor, Ph.D, executive director, Center Point, 
Inc., representing Center Point, Inc.
    Ms. Pelosi. Mr. Chairman.
    Mr. Porter. Oh, I'm sorry, Ms. Pelosi. I'm sorry.
    Ms. Pelosi. Thank you, Mr. Chairman. Mr. Chairman, before I 
introduce our next witness, I did want to mention, for your 
comments about the title X--it seems a long time ago, but it 
was five minutes ago, the previous witness. Following up on 
that, I was very encouraged by your remarks, and of course they 
are a reflection of the great leadership that you have 
demonstrated on this issue, both domestically and 
internationally. So as a member of your committee, once again, 
I'm proud of you as my chairman----
    Mr. Porter. Thank you.
    Ms. Pelosi [continuing]. And I thank you very much for your 
very, very unequivocal and strong statement in support of 
family planning.
    I also appreciate the opportunity that you are allowing me 
in welcoming and introducing Dr. Sushma Taylor, a CEO at Center 
Point. Dr. Taylor's program serves the San Francisco Bay Area 
and specializes in substance abuse treatment services for women 
and children, the homeless, adolescents, those with HIV, 
including some involved in the criminal justice system.
    Dr. Taylor has long been a pioneer in the field of 
treatment. As one who believes that treatment is a very 
appropriate route for us to go to reduce demand in our country, 
demand for doing drugs in our country. I appreciate and support 
her approach, and I am pleased to welcome here today, on behalf 
of the committee, Dr. Taylor, and we look forward to your 
remarks.
    Thank you, Mr. Chairman.
    Mr. Porter. Thank you, Ms. Pelosi.
    Ms. Taylor. Thank you, Ms. Pelosi. That's extremely 
generous, gracious, as ever. You've been such an advocate for 
women and for the dislocated, for the poor, and on behalf of 
all of them, I thank you for your continued work.
    Ms. Pelosi. Thank you.
    Ms. Taylor. Mr. Chairman, thank you for the privilege of 
being here today. I serve as the CEO at Center Point, a 
provider of comprehensive health, social, vocational services 
to high-risk families and individuals. I also appear on behalf 
of my colleague, Dick Steinberg, president of WestCare, who 
provides programs in Nevada and California and Arizona.
    Our programs offer treatment and rehabilitation that 
interrupt abusive addiction cycles. Our organization, in 
existence for 28 years, has expanded, and we currently serve 
5,000 clients per year in diverse health, social, addiction, 
treatment, and vocational services.
    Center Point and WestCare both believe that there's 
extraordinary potential in the most ordinary person, and our 
clients visibly demonstrate that change is possible and that 
adversity can be overcome. The clients we serve overcome 
domestic violence, homelessness, sexual abuse, unemployment, 
substance use disorders, and infectious diseases such as 
tuberculosis and the devastating HIV/AIDS. They become proud, 
productive members of our community.
    We have, Mr. Chairman, that the President's Fiscal Year 
1999 budget request for SAMHSA may contain a $200 million 
increase. Center Point and WestCare respectfully ask that this 
additional funding be shared between the substance abuse block 
grant and the knowledge development application program, 
thereby enabling the expansion of innovative approaches to 
treatment.
    We would like to emphasize that the KDA efforts are 
worthwhile, and they refine our understanding of what works in 
controlled treatment settings. An investment in knowledge 
development and application will work to enhance cost-
effectiveness of the entire substance abuse treatment field.
    You're interested in studies and results. In 1997, the 
Center for Substance Abuse Treatment revealed the entire study 
of 5,700 clients one year after treatment. There was a 55 
percent reduction in drug and alcohol use, a 77 percent 
decrease in violent crime, a 19 percent increase in employment, 
and an 11 percent decrease in welfare costs. Treatment pays; it 
pays great dividends.
    We also believe in the development of educational, 
vocational, and interpersonal skills that we encourage in our 
programs. We hope that you, through your committee, will charge 
the Department of Labor to continue to provide vocational 
assessment and job training for people who make the difficult 
transition from welfare to work.
    We encourage the subcommittee to engage the Department of 
Labor and Education to work with community-based organizations 
which have successfully infused employment-related skills into 
their treatment programs, and also as they begin to design 
welfare-to-work curriculums.
    Another one of our goals is to provide cognitive behavioral 
and psychosocial skills which are aimed at enhancing personal 
responsibility. The National Center on Child Abuse and Neglect 
has recognized the role that parental substance abuse and 
domestic violence can play in child abuse and neglect. Domestic 
violence and treatment programs need to be an essential 
component to any effort to improve the quality of life for all 
of the families that are afflicted by substance abuse and 
concomitant disorders. We ask thesubcommittee to encourage the 
Administration for Children and Families to engage agencies such as the 
CDC to continue to fund demonstration projects that recognize the 
correlation between substance abuse and domestic violence.
    We further urge the committee to engage programs such as 
the Bureau of Primary Health Care's health care for the 
homeless program, because these programs allow homeless 
individuals to access primary health care needs in a more cost-
effective manner than emergency rooms. They need to stabilize 
their health conditions before they can engage in treatment.
    Finally, Mr. Chairman, Center Point and WestCare are 
pleased that the National Institute on Health is beginning to 
reconsider research protocols and that now the grant review 
procedures will be based on the quality of the science and the 
impact that it might have on the field, rather than on the 
details of technology or methodology.
    Mr. Chairman, Ms. Pelosi, on behalf of WestCare and Center 
Point, thank you for this opportunity. But more than that, we 
thank you on behalf of the families we serve for your 
leadership, your generosity, your dedication. Your actions do 
make a difference in the lives of the most dislocated people in 
our communities, but also those who have hope because of your 
leadership. We hope that you will continue to fund these 
programs that make them become productive human beings.
    Mr. Porter. Dr. Taylor, thank you very much for your 
testimony.
    We have a facility in my district in Waukeegan, Illinois 
that sounds very similar to your Center Point facility. There's 
others, and of course I have visited it and seen the good work 
that it does for people that have tremendous problems in their 
lives and get involved in drugs and see no way out. There's 
other programs in Chicago that I visited also, and they are 
apparently very similar to what you do. So we, I think, 
understand the importance of this funding.
    In the President's budget, the increases in discretionary 
funding are largely supported by proposed revenue increases 
mostly--not solely, but mostly--coming from the tobacco 
settlement. The difficulty, of course, is going to be: are we 
going to see a tobacco settlement this year? Is that going to 
be in the budget? I think, very frankly, it's a wonderful idea, 
particularly in reference to health care and health research 
funding, to have our tobacco industry share more in those costs 
and would be supportive. But I don't know that this is ever 
going to materialize. So we're going to have to see whether 
these problematical revenue increases are going to be there, 
and in the meantime, we're going to have to do the very best we 
can within the resources we actually are allocated, whatever 
they may be, to prioritize.
    That's another short sermonette for today, but I think 
we've got to put the thing in perspective.
    Ms. Taylor. We know that funding is tight, and we also know 
that you have difficult choices and conflicting needs. We just 
ask you to remember with your hearts the people that do suffer, 
as you do every year, and as you make those difficult choices.
    Mr. Porter. Thank you so much.
    Ms. Pelosi.
    Ms. Pelosi. Thank you. In the interest of time, I will be 
brief, Mr. Chairman, but I appreciate your interest in Dr. 
Taylor's testimony.
    Dr. Taylor, I'm sure you realize that $200 million in the 
current budget environment is a great deal to request. Can you 
briefly give just a little justification as to why that figure 
is the appropriate number?
    Ms. Taylor. Ms. Pelosi, for the last five years, there's 
been cuts in the treatment dollars going toward substance 
abuse, as the problems have been expanding. Treatment does pay. 
The California study indicated that, for every dollar invested 
in treatment, there are seven dollars in benefits that are 
saved in health care costs, in traffic fatalities, and criminal 
justice costs. As we continue to make a large investment in 
criminal justice, we must think about a cost offset, and 
substance abuse treatment can do that. Two hundred million 
dollars may sound like a lot, but across the country, with the 
number of people that are on waiting lists for treatment, it 
doesn't go very far.
    Ms. Pelosi. I appreciate that. Doctor, could you just 
briefly explain way the KDA grant, as opposed to a block grant, 
tends to be a more innovative and effective approach?
    Ms. Taylor. The block grant goes to the States and allows 
the States to add infrastructure development and new programs, 
as well as to maintain their own. The knowledge development 
application allows the Federal Government to offer a rapid 
response to jurisdictions that are hit with emerging epidemics. 
For instance, in the Northeast corridor, the drug of choice is 
heroin, but in California, Ms. Pelosi, as you are aware, the 
drug of choice is methamphetamine, particularly affecting young 
people. Therefore, if the Federal Government was to have a 
uniform response across the country, some jurisdictions would 
not have the flexibility for either rapid mobilization of 
essential resources or target-specific mobilization, and the 
knowledge development application resources allow that.
    Ms. Pelosi. Thank you very much, Dr. Taylor, for your 
testimony, for your answers, and for your leadership on this 
important issue.
    Ms. Taylor. Thank you so much.
    Ms. Pelosi. Thank you, Mr. Chairman.
    Mr. Porter. Thank you, Ms. Pelosi. Thank you, Dr. Taylor.
    [The prepared statement of Sushma Taylor follows:]


[Pages 562 - 570--The official Committee record contains additional material here.]



                                        Thursday, January 29, 1998.

                                WITNESS

GAIL H. CASSELL, AMERICAN SOCIETY FOR MICROBIOLOGY
    Mr. Porter. I want to at this point apologize. We have nine 
witnesses remaining. We are at seven minutes of 12:00. 
Obviously, we're running very substantially behind. Partly, 
that's due to the fact that we've had several celebrity 
witnesses and have taken longer with them and have caused 
ourselves to come behind. I'm going to try to keep us--if we 
allocate just five minutes, we're going to run until 20 minutes 
of 1:00 as it is. So I'm going to try to keep us on our time 
targets as much as we possibly can for the remaining witnesses, 
with an apology that it certainly wasn't intended to squeeze 
your time, because your time is just as important as anyone 
else's, but we'll do it as quickly as we can.
    Dr. Gail H. Cassell, past president of the American Society 
for Microbiology, Chair, Public and Scientific Affairs Board, 
and director of infectious diseases research at Lilly Research 
Laboratories, Indianapolis, Indiana, testifying in behalf of 
the American Society of Microbiology. Dr. Cassell, welcome.
    Ms. Cassell. I'd like to start out, Mr. Porter, by thanking 
you for your previous commitment to biomedical research and 
support for NIH, and to just say that this previous investment, 
as you probably are aware, has resulted in enormous benefit and 
improvement of human health, particularly in the area of 
infectious diseases. It has resulted most recently in 
technologies to allow us to completely sequence the entire 
genome of infectious agents. As a result of this, it's led to 
new targets for development of new antibiotics, new candidates 
for vaccines, as well as new diagnostics. As you will see in 
the remainder of the testimony, this becomes all important in 
today's world of infectious diseases.
    Having said that, and also to point out that this 
investment, as you are also aware, not only has resulted in 
improvement of health, but also continues to improve and 
contribute to the economic prosperity of the country. Having 
said all this, however, the American Society for Microbiology 
as many congressional leaders, as well as individuals, believe 
that the Federal Government is not making a sufficient 
investment in biomedical research. We would like to see this 
increased. Therefore, we do support a doubling of investment in 
research, and along those lines, would support a 15 percent 
increase in the budget of NIH for this year.
    We feel that we can best make the case for encouraging you 
to support this increase by using infectious diseases as an 
example. While I'd like to be very informal about this, in line 
with your desire to keep on time, I'll direct my comments to my 
written comments, but would be happy to answer any questions.
    As you are well aware, each day headlines not only in the 
national news, but also international news describe new 
diseases that are rapidly arising worldwide and old diseases 
that are re-emerging as infectious agents evolve or spread, as 
changes occur in ecology, socioeconomic conditions, and 
population patterns.
    Humans, through rapid world travel and unprecedented trade, 
can transport disease from one country to another today often 
in less than 24 hours. Infectious diseases not only are spread 
from human to human, animals to humans, but also, as you are 
aware very acutely, I'm sure, there is a tremendous threat from 
bioterrorism today. This, too, directly involves manipulation 
of infectious agents. So threats posed by infectious diseases 
not only to our well-being, but also to now national and world 
security are apparent.
    What I would like to emphasize is something that you may 
not be aware of. Most people, when you tell them that 
infectious diseases are the leading cause of death worldwide, 
it is already known by them because most of these diseases 
occur in developing countries. What you may not be aware of is 
that infectious diseases, as of last year, became the third 
leading cause of death in the United States. Many people would 
immediately respond, ``Aha, HIV.'' I would point out to you 
that this increase in infectious diseases and death, however, 
are related to pneumonia in otherwise healthy individuals, as 
well as a significant increase in bloodstream infections.
    In fact, what many people also may not be aware of in this 
increased age of technology is that, since 1980, deaths due to 
infectious diseases in this country--again, not to HIV alone, 
but to the conditions that I've mentioned--have increased by 
almost 60 percent. These are data published last year by the 
Centers for Disease Control.
    Antibiotics are now failing, as you probably have heard, to 
control common diseases such as bacterial pneumonia. In fact, 
last week a series began on CNN emphasizing the problems that 
we currently face with almicrobial resistance, and in fact this 
series will continue. Ninety percent of the strains of 
staphylococcus aureus, which is one of the most common disease-
producing organisms in humans, are resistant to penicillin and 
other related antibiotics. The incidence of vancomycin-
resistant strains of enterococcus, an organism that both you 
and I, and everyone in this room, normally carries in their 
intestinal tracts, but which is the most common cause of 
infections in hospitalized patients, the antibiotic resistance 
to this organism has increased twentyfold just since 1989.
    As you are well aware, because of the publicity, food-borne 
diseases are responsible now for over 30 millionillnesses in 
the United States with over 9,000 deaths being due to infectious 
diseases, and this is only the tip of the iceberg with regard to food-
borne disease.
    Additional research is needed urgently to better understand 
the pathogenesis of these organisms, as well as hepatitis C, 
that we now know has a direct link to liver cancer.
    We would say that the financial burdens of infectious 
diseases are staggering. Approximately $120 million or 15 
percent of all health care expenditures are related directly to 
infectious diseases in this country.
    I will pass by some of my other comments because of the 
interest of time. I will just say that, in conclusion, ASM 
realizes the difficulty of achieving the goal of doubling the 
NIH budget over the next five years under the current spending 
limits, but we certainly encourage you to significantly 
increase the resources, particularly in light of the problems 
that this country and the world face with regard to infectious 
diseases. We would urge you not only to take this into 
consideration with respect to NIH, but also the Centers for 
Disease Control, which also plays a very important role in this 
regard.
    I appreciate the opportunity to tell you this directly.
    Mr. Porter. Dr. Cassell, we definitely do hear you.
    Ms. Cassell. Okay.
    Mr. Porter. These are very serious concerns, and your 
testimony has highlighted them for us, and we appreciate your 
coming to testify today.
    Ms. Cassell. Thank you.
    [The prepared statement of Gail H. Cassell follows:]


[Pages 574 - 583--The official Committee record contains additional material here.]



                                        Thursday, January 29, 1998.

                                WITNESS

CHARLES N. QUIGLEY, CENTER FOR CIVIC EDUCATION
    Mr. Porter. Charles N. Quigley, executive director, 
representing the Center for Civic Education. Mr. Quigley.
    Mr. Quigley. Mr. Chairman, I appreciate the opportunity to 
testify here today on behalf of two programs in civil education 
supported by the U.S. Department of Education. These are a 
domestic program entitled, ``We the People,'' ``Citizen and the 
Constitution,'' and the ``Civitas,'' an international civic 
education program for former Soviet Bloc and Yugoslav nations 
conducted with the support of the USIA.
    I've submitted written testimony. I'd like to highlight a 
few of the achievements of the program and say something about 
how they are complementary and interrelated.
    The We the People domestic program is implemented 
throughout the United States with a volunteer network of about 
500 coordinators at State and district level. In the 
international program, 15 States and the District of Columbia 
are now--the leadership is linked with eight former Soviet Bloc 
and Yugoslav nations in an exchange. For example, leaders in 
Alaska, the District of Columbia, Massachusetts, and New York 
are linked with their counterparts in Russia. Leaders in 
Arizona, California, and Nevada are linked with Bosnia and 
Herzegovina, Croatia, and Macedonia. Leaders in Indiana and 
Illinois are linked with Latvia and Lithuania.
    As a result of these exchanges, programs developed for 
students in the United States are being picked up and used 
successfully with students in former Soviet Bloc and Yugoslav 
nations. For example, this text is used throughout the United 
States with millions of students at the secondary level in the 
domestic program. This is a Russian edition of this text, which 
was just printed by the Russian Teachers' Union. Fifty thousand 
copies are now being used with secondary students throughout 
Russia. This text is used in the United States as a basis of 
the National Academic Competition at the secondary school 
level. An exchange delegation from Hungary observed the program 
in Florida and have gone back and duplicated it in Hungary. 
There is now a nationwide academic competition based on this 
model Hungary. Last year, it was hosted by the President and 
Hungarian Parliament. The academic competition this May is 
expected to be even larger than the one last year.
    The Center's new program at the middle school level, which 
involves students in grassroots politics in identifying public 
policy programs at the local level, action plans, participating 
in local community government, is now being used with the 
support of the National Conference of State Legislatures in 47 
States in the United States.
    This is a Czechs version being used in a pilot program in 
the Czechs Republic, a Slovak version being used in the Slovak 
Republic, a Croatian version being used in Croatia. There are 
also versions in Lithuanian and Latvian.
    But perhaps the program we're most proud of is this 
version, which happens to be a Bosnian version, that is being 
used throughout the Federation of Bosnia and Herzegovina. There 
are now 1,500 teachers using this program in Bosnia, in the 
Federation. By the end of this year, we anticipate there will 
be 50,000 students will have taken part in the program, which 
has been going for two years.
    Last year, an historic event took place in Sarajevo in May 
in which classes from throughout the Federation came and 
participated in their first ever academic competition on 
democracy. We're pleased, and somewhat astounded, to be able to 
report that the Ministry in the Republic of Srpska has approved 
a program. It's being used now in the Republic of Srpska, and 
they intend to bring Serb students to the second competition in 
Sarajevo this May. That will be truly an historic event with 
students--Croat, Muslim, and Serbs all competing on fundamental 
principles of democracy.
    The success of these programs has led our Russian 
colleagues and the Hungarians and Bosnians, and so forth, to 
suggest we hold an international competition on democracy, 
which we would love to do. We'll have to figure out some way to 
do that.
    This program is a two-way street. We give and we get. These 
are lessons developed by teachers in Russia, Hungary, Poland, 
and the other nations I mentioned, which portraytheir 
experience in attempting to make the transition from totalitarian and 
authoritarian systems to constitutional democracies. These are now 
being distributed to 3,000 teachers in the United States to be used on 
a field test basis, and they have the potential to use them with as 
many as 200,000 students, American students, this spring semester to 
help American students understand what it's like to live in an 
authoritarian and totalitarian system, and perhaps develop a greater 
appreciation for their heritage.
    Mr. Chairman, I'm pleased that the administration has 
requested a modest increase in the domestic program to enable 
us to expand Project Citizen at the middle school level. 
They've also requested continued funding of $5 million for the 
international program. Half of that goes for civics; half for 
economic education. The program has been so successful, the 
USIA has asked us to involve more States and more former Soviet 
Bloc countries in the program. So we're requesting a modest 
increase of $500,000 for each, civics and economics, a total of 
a million dollars, to help us implement the program in such 
countries as Ukraine, Georgia, Biolarus, and of course Albania, 
to help them overcome the devastating effects of the recent war 
with the United States. I couldn't resist the joke--excuse me.
    I'm grateful for the opportunity to testify before you.
    Mr. Porter. Mr. Quigley, I think you're doing great things, 
and you deserve our support and we're going to do the best we 
can to help you. That is exciting because that really makes a 
difference, and particularly when you're going people to 
people.
    I was just in Cyprus trying to help them develop 
intercommunal projects that allow people who are on the side of 
the line that has divided their country for 24 years to have 
human contact with one another, just as a beginning----
    Mr. Quigley. Yes.
    Mr. Porter [continuing]. And if you can reach out to other 
people across the world the way you are doing in bringing the 
lessons of democracy and respect for each human being to them, 
I think that's absolutely wonderful.
    Mr. Quigley. Thank you very much. I appreciate your support 
in the past very much for the program.
    Mr. Porter. Thank you for testifying.
    Mr. Quigley. Incidentally, the Bosnian Minister of 
Education will be here in a few weeks, and I hope that you'll 
have an opportunity to meet him.
    Mr. Porter. All right. I look forward to it.
    [The prepared statement of Charles N. Quigley follows:]


[Pages 587 - 597--The official Committee record contains additional material here.]



                                        Thursday, January 29, 1998.

                                WITNESS

STANLEY O. IKENBERRY, AMERICAN COUNCIL ON EDUCATION
    Mr. Porter. Stanley O. Ikenberry, president, American 
Council on Education, testifying in behalf of the Council. 
Stan, it's wonderful to see you.
    Mr. Ikenberry. Thank you, Mr. Chairman.
    Mr. Porter. Former president of the University of Illinois, 
one of our premiere and large public universities in our 
country, and we are old friends. So, Stan, why don't you 
proceed in any way you like.
    Mr. Ikenberry. Well, thank you, Mr. Chairman. It's a real 
pleasure to be back here and, very frankly, a privilege. As I 
think you and I discussed at the close of the last session, the 
leadership that you and members of this committee have given to 
higher education funding, both for students, to open access, 
and to biomedical research has just been absolutely crucial, 
and it's widely recognized, certainly within the academic 
community, and I'm sure beyond that. If I do nothing else 
today, I want to thank you and members of the committee for the 
high priority that you've accorded higher education funding, 
and particularly student aid funding and biomedical research 
funding. It's open access; it's provided opportunity; it's 
provided choices and options to students that otherwise would 
not have been there, and overall, it's helped raise the quality 
of the academic enterprise and higher education in this 
country.
    It's sometimes said that American higher education is the 
best in the world. Whatever our status may be, we need to get 
even better, if one thinks about the changes that are taking 
place in our society and the implications not just for 
individuals, but for the quality of life in our society and the 
economy. I thank you for the priority and the leadership that 
you've given this issue.
    I know that time is limited, so let me just comment quickly 
on the linkages between access to higher education controlling 
college costs and the importance of the Pell Grant and other 
Federal student aid programs. Family circumstance, family 
wealth, continues to be a very significant factor in terms of 
defining whether an individual in this country will or will not 
have access to college. For those students in the highest 
income levels, the highest family income levels, for example, 
they are more than 50 percent more likely, half again as likely 
to go on to college in contrast to the students at the lowest 
income level.
    Last year, you made huge strides by increasing the minimum 
Pell Grant--or the maximum Pell Grant award by $300 to a $3,000 
maximum. In addition, the innovative tax program that provides 
incentives and opportunities for middle-income families I think 
will have a tremendous impact. We still have a tremendous way 
to go. If one were to restore the Pell Grant maximum award to 
1978 levels in terms of purchasing power, it would require 
about a 35 percent increase or morethan $1,000 increase. In our 
wildest dreams, we're not likely to do that this year, maybe this year 
or next year, but we need to continue to press to make progress on that 
front to close the gap.
    The point, I think, it too often missed of the linkage, 
however, between strong student aid programs and the ability to 
control college costs. The campus student financial aid budget 
has been the most significant cost-increase driver on many 
college campuses, particularly private and independent 
institutions that need to provide access to students from 
middle-and low-income families.
    Those tuition increases now have been headed down--the rate 
of increase has been declining for the last three or four 
years. Last year it was the lowest in 25 years. The National 
Commission on College Costs, just this past week, issued its 
report. I think that will be the No. 1 agenda on most college 
campuses across this country. Every president in the country 
shares this concern. But, I think, while we pursue that agenda 
at the campus level, it's important to note that a strong 
Federal student aid program, particularly a strong Pell Grant 
program, is very important to containing college costs.
    One word also on the importance of campus-based programs: 
It's on the campus that student aid packages are actually put 
together, and it's a struggle for institutions, for students, 
and for families. The key is flexibility, but the Perkins 
needs-based campus student aid loan program is a terrific 
example of one program that's very important to campuses to be 
able to put together that tailormade package for individual 
students, as is, for example, the SEOG program and other 
campus-based programs. I simply wanted to stress the importance 
that we attach to that flexibility.
    One final point: Mr. Chairman, you have received a great 
deal of testimony this morning, inspiring testimony, on the 
importance of biomedical research investment, and you, 
yourself, have demonstrated a tremendous interest in that area.
    I wanted to return to an issue that's a bit of concern to 
you and to all of us, and that is the indirect cost recovery 
rate. I was pleased to read an article in The Chronicle for 
Higher Education and Beta on the top 100 research universities 
and the history of indirect cost rates from 1991 to 1997. The 
fact is that we've made some very significant progress on that 
front. A clear majority of these 100 institutions, 56 of the 
100 institutions, had either reduced the indirect cost recovery 
rate or it had remained flat. The range of rates between the 
highest and the lowest had narrowed very significantly, and in 
the top 15 campuses with the highest indirect cost recovery 
rates, 14 out of the 15 had declined over that period. I think 
we are making some significant progress on this issue as a 
result of improved accounting programs, stronger Federal 
oversight, and a higher priority on the agenda of college 
presidents themselves. I believe this will provide us a good 
foundation for the kinds of strengthening that you and others 
want to bring about in the biomedical research programs.
    We know the budget pressures you face, and again, are 
grateful for the priority that you assign these issues because 
a strong Pell Grant program and other Federal student aid 
programs really is crucial not just to our campuses, but, more 
importantly, to students and families and the future of the 
country.
    Again, I thank you, Mr. Chairman, for the ability to come 
before you again.
    Mr. Porter. Thank you, Dr. Ikenberry. Stan, I have to say 
that we'll do our very best. I think you probably heard my two 
sermonettes earlier today about budget. Those are very 
important points.
    Mr. Ikenberry. We understand that completely.
    Mr. Porter. I know you know them. So we appreciate very 
much your coming to testify.
    Mr. Ikenberry. Any way we could work with you to help you, 
we want to do that. Thank you.
    Mr. Porter. Thank you.
    [The prepared statement of Stanley Ikenberry follows:]
    [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.]


[Pages 601 - 606--The official Committee record contains additional material here.]



                                        Thursday, January 29, 1998.

                                WITNESS

ANN L. JENICH, NATIONAL ASSOCIATION OF ANOREXIA NERVOSA AND ASSOCIATED 
    DISORDERS
    Mr. Porter. Ann Jenich, ANAD, director of special projects 
and State of Illinois Board member, testifying in behalf of the 
National Association of Anorexia Nervosa and Associated 
Disorders. Ms. Jenich? Did I pronounce your name right?
    Ms. Jenich. You're the first person to pronounce my name 
right in about five years.
    [Laughter.]
    My name is Ann Jenich. I'm director of legislative affairs 
for the National Association of Anorexia Nervosa and Associated 
Disorders. Our acronym is ANAD. On behalf of ANAD, I'm deeply 
grateful to Congressman Porter and the members of the 
subcommittee for this opportunity to appear and give testimony 
on behalf of the estimated 8 million women and men in this 
country who are suffering from often life-threatening eating 
disorders.
    I also want to take this time to personally thank 
Congresswoman Lowey for her efforts on behalf of eating 
disorders by securing $1 million for the implementation of an 
eating disorders education and information hotline. It's an 
important first step. Educating people to the dangers and to 
the widespread nature of this illness is important, but 
education alone is not enough.
    Founded in 1976, ANAD is our Nation's oldest nonprofit 
organization dedicated to alleviating the problems of eating 
disorders. ANAD early detection, education, and prevention 
programs provide models for low-cost outreach services that 
benefit hundreds of thousands of people over the past 20 years.
    As a woman who has survived an eating disorder, it is also 
my privilege to speak out forcefully today about the dangers 
eating disorders pose to the physical and mental well-being of 
an epidemic number of America's youth, and in knowing this, on 
the importance of expanding programs, services, and research, 
particularly applied research, aimed at preventing another 
generation of youth from developing eating disorders.
    The issue--and I'm sure you all know this--of eating 
disorders cuts to the very heart of the collective power, self-
esteem, and life success of a generation of young people. This 
is a major public health problem, one that seriously impairs 
and often endangers the lives of a vast majority of people who 
develop these disorders.
    Eating disorders as a phenomenon are culturally-embedded in 
the experience of American young adulthood, and while these 
problems are especially acute for our Nation's girls, we know 
they are shared with a growing number of boys. What is the 
matter? Why do so many young women reject their bodies? Why is 
it that for 80 percent of American young women being female 
means feeling too fat? And I know I justspent a weekend at the 
University of Illinois working with the Panhellenic Institute, and I 
will tell you everybody had a story to tell.
    What are the consequences to our Nation's children of 
adopting such deeply-distorted body images? We also know that 
people's body images are shaped at very young ages, and 
teachers are telling us, our organization, that girls as young 
as 5 and 6 are overly concerned with their weight.
    The National Institute of Mental Health reports that 1 out 
of 10 people with anorexia nervosa will die. A staggering 1 in 
4 college-age girls will struggle with some form of an eating 
disorder. It is logical to assume that a potential consequence 
of the negative relationship many of America's children develop 
with their bodies is in part associated with the dramatic rise 
in eating disorders. In fact, Dr. Harold Goldstein, Director of 
the National Institute of Mental Health, reports that the 
incidence of anorexia and bulemia has doubled over the last 
decade. We are also seeing in our organization second-
generation children from mothers who have anorexia or bulemia 
appearing over our hotline.
    Eating disorder specialists, educators, and researchers are 
corroborating those findings. We are also listening to teachers 
during the conferences and the workshops that we host--the same 
thing.
    Given the epidemic of disordered thinking, graphically 
illustrated in these statistics, and the undenial influence of 
the media on the developing self-concepts of America's 
children, it is no wonder that there is a cultural mindset in 
place by the time they reach adolescence that places millions 
of our children at risk.
    Death and disability rates from eating disorders are among 
the highest of all mental illnesses. Yet, both in number of 
victims and cost of treatment, eating disorders are major 
illnesses in our country which do not now, and have not ever, 
received adequate understanding or support.
    For example, allocations to combat alcohol, drugs, or 
schizophrenia and effective disorders are each funded at 
exponentially higher rates than the amounts given to eating 
disorders. Yet, for illnesses like eating disorders, there is 
also inadequate information available to the general public 
about these disorders, and we are grateful again, as I said, 
for the hotline.
    Our organization just completed a landmark survey of 50 
States and we conducted a survey to assess the types of eating 
disorders, programs, and services available to American 
citizens. Preliminary survey results reveal a widespread 
deficit in educational information available to all Americans. 
In fact, at the grade school level, there was very little 
available information to teachers about just the basic etiology 
of eating disorders, let alone prevention. Given the pervasive 
nature of these disorders, in our minds that's shocking.
    Knowing this, coupled with the fact that there's an only 
estimated 50 percent cure rate for those suffering from chronic 
eating disorders, we believe there is a dire need for Federal 
funds sufficient to establish a national comprehensive 
prevention program to protect our citizens from these 
illnesses.
    While evidence of the need for primary educational programs 
is indisputable, it is not enough. It is critical, if we hope 
to reduce the prevalence of these illnesses, to also provide 
long-term opportunities for our children and youth to examine 
and challenge the attitudes and behaviors that lead to eating 
disorders.
    Programs and prevention must go beyond addressing 
problematic and symptomatic behavior to teaching resistance to 
cultural values and attitudes that diminish a young person's 
self-esteem. To be truly effective, prevention programs should 
focus on teaching children the skills necessary to cope with 
the emotional complexities of life in a positive, life-
affirming way. We believe this can be most effectively achieved 
through school-based programs and support groups.
    I want to make a personal comment here. There's very little 
emphasis on this at the research level and very little being 
done out there, but at the University of Arizona there has been 
a study that is just completed, and the results are very, very 
positive. It was a longitudinal study. It was a school-based 
study, and we need to do more studies and fund more studies of 
that nature.
    For this reason, we urge Congress to allocate $10 million 
for use in developing comprehensive education and prevention of 
eating disorders through early detection and educational 
wellness programs for all of America's school-age children. As 
a recognized leader in this field, we believe our organization 
could provide a model for this service.
    We also believe, and we know, that eating disorders are 
multi-causal. For this reason, we ask Congress to increase 
current funding for the research necessary to further 
investigate the causes of these disorders, and not just funding 
for drug studies. This funding is essential if we are to 
develop truly inoculative prevention programs.
    We ask Members of Congress to do all that they can today to 
enact legislation assuring that the problems and issues of 
people suffering from eating disorders are adequately 
addressed, so that we can look forward in the future to 
eradicating these deadly illnesses that so adversely impact our 
youth in this country.
    Thank you.
    Mr. Porter. Ms. Jenich, we thank you for coming to testify. 
The association is in Highland Park, Illinois, in the heart of 
my district. Are you a constituent?
    Ms. Jenich. I am.
    Mr. Porter. Well, we're delighted that you could come.
    Ms. Jenich. But I am a Packer fan, I want to tell you.
    Mr. Porter. A Packer fan?
    Ms. Jenich. Absolutely.
    Mr. Porter. Well, the Bears don't leave you much choice 
these days, though.
    Ms. Jenich. It's been a long winter.
    Mr. Porter. I would say so.
    I'm dismayed at the degree to which you say we are falling 
short in this area. Congressman Lowey has been a very strong 
advocate, as you mentioned in your testimony. I have great 
concern about these diseases, and we simply are going to have 
to do better.
    Ms. Jenich. Okay. I'd also like to say one more thing. We 
are meeting this week with the legislative assistants for the 
women who are on the caucus, the Congressional Caucus, and one 
of the things we are asking the caucus to do is to initiate a 
letter to President Clinton asking him to develop a task force 
to take a look at the issue of eating disorders in this 
country, and also the bigger issue of body image distortion 
that many women seem to suffer from.
    Mr. Porter. Thank you so much for coming to testify.
    [The prepared statement of Ann Jenich follows:]


[Pages 611 - 618--The official Committee record contains additional material here.]



                               WITNESSES

RONALD KRAMIS, FIBROMYALGIA NETWORK
    Mr. Porter. Ronald Kramis, Ph.D. neurophysiologist, 
testifying in behalf of the Fibromyalgia Network.
    Mr. Kramis. Yes.
    Mr. Porter. Dr. Kramis.
    Mr. Kramis. Thank you, Mr. Chairman. In light of your 
sermonette, I would like to emphasize that your capability to 
direct the attention of NIH to the subject of my presentation 
is extremely important. There's a huge fund of information in 
the basic neurosciences that is yet not being applied to 
fibromyalgia. It's important that the attention of NIH, as well 
as some funding, be directed toward this disease.
    Fibromyalgia is a persistently painful disease which costs 
this Nation $20 billion in health care and socioeconomic costs. 
I want to talk to you particularly about the unremitting life 
of pain that is associated with fibromyalgia. This is a pain 
which destroys careers and disrupts. This is a pain for which 
there is no truly effective treatment. This pain is endured day 
after day, year after year, by over 5 million Americans. Right 
now, because of progress in the basic neurosciences and the 
clinical neurosciences, you and NIH have a tremendous 
opportunity to help these 5 million Americans. You can do so by 
focusing attention on this disease, both the attention of NIH 
and the attention of the scientific community.
    The pain of fibromyalgia is a deep and sometimes agonizing 
muscular-skeletal pain that is perceived to occur throughout 
the body. Just as with many other chronically-painful 
conditions, such as severe low back pain, fibromyalgia pain 
occurs in the absence of any apparent injury or disease in the 
tissues that are felt to be painful. This often raises 
questions of credibility for individuals suffering from 
fibromyalgia and for the disease itself, particularly within 
the health care insurance industry.
    Let me assure you as a neuroscientist who has been studying 
the biological mechanisms of pain for many years, even severe 
and persistent pain can occur without pathology being present 
in the tissues which are felt to be painful. Many of the 
biological mechanisms by which this can occur are already 
understood, some of them even at the molecular level. It's a 
tragedy for individuals who suffer the unremitting symptoms of 
fibromyalgia and other chronically-painful conditions that so 
few clinicians, scientists, and health care administrators 
understand the biological mechanisms of pathological pain.
    I'd like to encourage you, now or at some other time, to 
try a little experiment which will help you understand how 
easily muscular-skeletal pain can occur in the absence of 
tissue damage. Just reach across your chest with your thumbs 
and all four fingers and squeeze the large muscle that runs 
from the back of your neck to your shoulder. A firm squeeze but 
one that is certainly not tissue-damaging will become 
uncomfortable. If you squeeze a bit harder, then hold that 
squeeze for a minute or two, or even a bit longer, if you can, 
you will have some understanding of the pain that fibromyalgic 
patients go through day after day, year after year.
    Two neurologically important substances, both known to be 
involved in the generation of persistent pain, have recently 
been shown to be present in pathologically high concentrations 
in the central nervous system of individuals with fibromyalgia. 
This indicates that fibromyalgia is probably a central nervous 
system disorder rather than a muscular-skeletal disorder, as 
originally thought.
    In spite of these recent discoveries, there remains no 
effective treatment for fibromyalgia. Even narcotic analgesics 
do not provide effective remedies for fibromyalgia pain.
    Fibromyalgia interferes with all aspects of a person's 
life. There are many symptoms associated with the disease other 
than pain itself. Even the normal activities of everyday life 
exacerbate the pain of fibromyalgia and produce abnormally 
intense fatigue.
    Fibromyalgia is severely disabling. Twenty-six percent of 
patients recently surveyed were receiving disability payments. 
Fibromyalgia frequently evolves from a prior, more restricted, 
more localized painful condition. In two recent studies, 25 to 
50 percent of patients with chronic, localized, low back pain 
eventually develop the total body pain of fibromyalgia.
    Fibromyalgia occurs eight to ten times more frequently in 
women than in men, and is to some extent familiar. This 
suggests a gender-link genetic component to disease.
    Now despite the $20 billion socioeconomic and health care 
burden of fibromyalgia, funding for fibromyalgia research is 
practically unavailable. On behalf of the 5 million American 
men and women who endure fibromyalgia and on behalf of 
Fibromyalgia Network, the largest self-help organization, I 
urge this committee, through NIH, to focus the attention of the 
scientific community on the fibromyalgia syndrome. As the 
result of recent discoveries in the neurosciences, this is the 
right time to fund fibromyalgia research.
    Thank you very much.
    Mr. Porter. Dr. Kramis, thank you very much for your 
testimony.
    If I understood you correctly, this disease---has anybody 
looked into the mental aspects of the disease, or is it clear 
it's physiological.
    Mr. Kramis. There right now is a considerable discussion 
within the scientific and clinical community concerning this. 
In any chronically-painful condition you are going todevelop 
some psychologically-associated conditions, but it's very clear that 
there are physiological mechanisms here which are known from the basic 
sciences to be related to persistent pain that are occurring in these 
individuals, and there is, I think, a really unfortunate tendency right 
now because the medical community does not have good means to treat 
this disease and does not understand. To say the easy answer--it's a 
mental problem; we can't treat it as a physiological problem; let's do 
a cost-containment study; let's get rid of these people, not treatment 
them--these people have a real disease; it's not going to go away. We 
are going to continue impacting the socioeconomic system, and cost 
containment alone is not the answer. We've got to find the cause.
    Mr. Porter. The reason, I asked is we had testimony--we had 
a special hearing on the role of the mind in health and 
healing, and there was testimony that a great deal--and you 
mentioned back pain, related back pain, in respect that a great 
deal of the back pain, which is a huge economic burden in our 
society--practically 80 percent of the American people 
experience it sometime, severe back pain--that that may be 
related to stress.
    That's the reason I asked whether this pain might also be 
related to stress, but you're saying that there's obviously 
clear physiological causes for it?
    Mr. Kramis. There are clear physiological causes, and with 
low back pain, 95 percent of the cost you're talking about 
occurs as the result of 5 percent of the individuals with back 
pain, and those are individuals with what's called idiopathic 
low back pain for which there is not an obvious physical cause. 
But if you look at the neurosciences, basic information in the 
neurosciences, there are mechanisms that just are not getting 
through to the clinical community, that can, in fact, give good 
reason why pain can occur in the absence of obvious physical 
pathology. It's a neurological mechanism. You don't generate 
pain in the tissues that feel painful; you generate pain in the 
central nervous system. And if there is disorder in the central 
nervous system--and, in fact, a common process called central 
sensitization--you will get abnormal levels of pain, and it 
doesn't require that you have a severe physical, pathological 
condition in the peripheral tissue in order that you feel 
extreme pain, as if it were occurring in those tissues.
    Mr. Porter. Dr. Kramis, thank you very much for your 
testimony.
    [The prepared statement of Ronald C. Kramis follows:]


[Pages 622 - 631--The official Committee record contains additional material here.]



                                        Thursday, January 29, 1998.

                                WITNESS

HEATHER FRASER, CYSTIC FIBROSIS FOUNDATION
    Mr. Porter. Heather Fraser, consumer and legislative 
affairs coordinator for the Cystic Fibrosis Foundation. Ms. 
Fraser.
    Ms. Fraser. On behalf of the 30,000 children and young 
adults with cystic fibrosis in this country, the Cystic 
Fibrosis Foundation is pleased to submit public witness 
testimony to support Fiscal Year 1999 appropriations for the 
National Institutes of Health. The Foundation applauds the 
subcommittee for the CF-specific language included in the 
appropriations bill last year. This vote of confidence in the 
NIH served to make the future for me and many others with CF 
much brighter.
    This year you have been hearing testimony punctuating the 
need for increased Federal funding for many entities, including 
medical research. It's my hope, however, that one day there's 
not going to be a need for extensive deliberation--not because 
an infinite pool of resources has suddenly become available, 
but because a portion of that need has been eliminated.
    The Cystic Fibrosis Foundation urges the House of 
Representatives to concur with the President's recommendation 
to double the funding for the NIH over the next five years, and 
as a downpayment on this commitment, provide an increase of at 
least 15 percent in 1999. We request your continued support of 
the full spectrum of research--basic, clinical, and 
translational--sponsored by the NIDDK and the NHLBI.
    The resource capacity of these two institutes is of 
paramount importance to propel the frontiers of CF research 
into the millennium. We believe this funding level is 
justifiable and appropriate allocation, given the clear and 
pressing research opportunities that exist.
    Current biomedical research policy only enables funding of 
two out of every ten approved research grants. This is 
unconscionable, and one cannot help but wonder what progress 
could emerge and how many lives could be saved if all of these 
meritorious grants were funded.
    Support to general clinical research centers must also be 
increased. These 74 NIH centers are specifically equipped to 
provide support to clinically-trained investigators to examine 
disease conditions and to access new therapies. With the advent 
of managed care and the increasing constraints that academic 
medical centers are placed under, more and more ancillary costs 
for clinical trials are being placed on the shoulders of the 
GCRCs. These centers are pivotal to the identification of new 
therapies to treat and eventually cure cystic fibrosis and 
other life-threatening illnesses.
    Further, the CF Foundation asks this subcommittee to direct 
the NIDDK, NHLBI, and the National Center for Research 
Resources to develop key mechanisms to ensure rapid 
translation--and I emphasize ``rapid''--of basic researchinto 
new therapeutic interventions. Creative development of an institutional 
infrastructure similar to that already in existence to support basic 
research in teaching institutions should be created to support and 
monitor ongoing clinical trial investigations.
    The NIH has an incredible track record in developing basic 
research and understanding cellular processes. However, it is 
unbelievably naive to think the pharmaceutical and biotech 
industries are prepared or in a position to lead the effort to 
take this knowledge and follow the clinical evaluation. Unless 
there is a permanent mechanism in place, drug development 
opportunities, along with many, many lives, are going to be 
lost unnecessarily.
    Clinical research training opportunities must also be 
expanded. Well-trained clinical investigators are vital to 
further progress made in the research lab and to translate that 
progress to patients. Never before has the need been more 
urgent and the number of candidates so small. Additional 
initiatives in post-doctoral training, support for new and 
young investigators, and programs to facilitate the mentoring 
of these individuals are pressing priorities.
    In closing, the National Institutes of Health and the 
Cystic Fibrosis Foundation continue to work together to provide 
for leadership in this country that is unparalleled. As a 
foundation, we understand current funding constraints and that 
Federal programs, regardless of their merit, have been placed 
in competitive positions. However, I can tell you as a patient 
at the end of the day when I return home exhausted, in part due 
to work, but more worn out as a result of dealing with the 
daily rigors that are the unwelcome hallmark of this illness, 
that cavalier acceptance is just not justified.
    Sadly, there will be casualties at the close of this 
debate. Nevertheless, we must work together and ensure that the 
human cost is kept to a minimum. On behalf of the CF 
Foundation, I again urge this Congress, in particular, this 
committee, to seriously consider the President's recommendation 
to double the NIH appropriations over the next five years, and 
in particular, provide a 15 percent increase in funding for 
1999.
    Thank you for allowing me to testify today.
    Mr. Porter. I'm inclined to say, tell us how you really 
feel, Ms. Fraser--[laughter]--but, no, I think your testimony 
was very strong. The President, unfortunately, has proposed to 
double the funding over the next ten years, not the next five 
years. His rate of increase is good. I'm encouraged by it, but 
it is not what we have suggested. It has raised his level of 
commitment dramatically to--I think the increase for this year 
would be about .2 percent for science research, but we think 
that 15 percent is a much nicer figure. But it is encouraging.
    I have to say that the funding of meritorious grants is 
low. The reason it's low, though, isn't that we aren't putting 
more resources into research. It's that there is so much more 
meritorious science out there to fund, and what we need to do 
is to ramp-up our funding to capture more of that earlier, and 
help in diseases like cystic fibrosis, where the chances for 
breakthroughs are good. What it tells us is that the historical 
level of about 3 percent in real terms per year that NIH has 
experienced over its whole 50-year lifetime is really not 
enough, considering how fast science has advanced in recent 
years, and we need to increase that real rate of increase much 
faster. So that's why we're all raising our sights, and in that 
process the President is raising his sights, too, and I think 
that's very positive, to try to move him along even a little 
more.
    Thank you for your good testimony.
    [The prepared statement of Heather Fraser follows:]


[Pages 635 - 639--The official Committee record contains additional material here.]



                                        Thursday, January 29, 1998.

                                WITNESS

PETER REUTER, PH.D., COLLEGE ON PROBLEMS OF DRUG DEPENDENCE
    Mr. Porter. Dr. Peter Reuter, Chair, Public Policy 
Committee, representing the College on Problems in Drug 
Dependence. Dr. Reuter--I've got to put my glasses on here. Dr. 
Reuter.
    Mr. Reuter. It rarely is pronounced correctly, even by 
reporters.
    Mr. Porter. Is it----
    Mr. Reuter. It is Reuter. Thank you.
    Mr. Porter. I read the ``e'' as an ``s,'' I'm sorry.
    Mr. Reuter. I'm pleased to appear before you today on 
behalf of the College on Drug Dependence, the oldest society 
for research on drug dependence and drug abuse, to urge your 
continued support from the National Institute on Drug Abuse and 
the Substance Abuse and Mental Health Administration. This 
committee has provided great backing in recent years for the 
NIDA budget. An almost unparalleled 7.6 percent increase--we 
pay attention to the decimal points quite closely--given in 
Fiscal Year 1998 is enormously appreciated by the college, and 
we urge that you provide a substantial increase in the funding 
base this year.
    As both the President and Senator Lott stressed in their 
speeches on Tuesday night, the continued high levels of 
adolescent drug use and smoking represent major public health 
problems for the Nation. The administration has drafted a plan 
for reducing drug use by 50 percent in the next tenyears. Some 
of your colleagues believe that this is insufficiently ambitious and 
propose that the same goals should be achieved in five years. In either 
case, success is critical dependent on the continued flow of research 
breakthroughs that can only be secured by NIDA-based new technologies 
in SAMHSA from the training and implementation programs.
    Let me illustrate the problem presented even by the 
administration's more modest goals for adolescent drug use. In 
1996, according to the Monitoring the Future Survey, 24.6 
percent of high school seniors reportedly used an illicit drug 
in the prior 30 days. In the 23 years of monitoring the future, 
that rate has never been lower than 14.4 percent, which was in 
1992, and that level was sustained precisely for one year and 
rose to over 18 percent the following year. Yet, the 
administration's target is to reach and sustain a level of 12.3 
percent ten years from now, an historically unprecedented low 
rate.
    The challenge here is simply in relative ignorance about 
what determines drug use amongst adolescents. The dramatic 
cycle in adolescent drug use over the past 20 years, the sharp 
increase in the late 1970s followed by a very prolonged and 
substantial decline throughout the 1980s, and then a sudden 
rebound in 1992, are known to be related to adolescent 
attitudes toward risk of drug-taking. What we don't know is 
what led to the changes in attitude that have driven the 
increases in drug uses recently. The most profound theory 
accounting for the upturn after 1992 is the two-word phrase: 
generational forgetting, which is hardly the basis for serious 
research or policy.
    Thus, we do not know how to reliably affect attitudes 
through prevention activities. That requires, first, careful 
development of model prevention programs based on the strong 
theoretical understanding of what drives adolescent behavior, 
and then these programs must be tested on a large scale to 
ascertain how they can effectively be implemented across the 
many school districts and local family service agencies in the 
country. So many model programs fail in the implementation, 
which needs to be studied itself.
    Absent substantial improvements in our knowledge base, the 
Nation's ability to achieve historically low adolescent drug 
use is very questionable. The same is true for smoking 
initiation rates. Your support for NIDA is vital since current 
prevention and treatment programs are simply not powerful 
enough to assure that, even with adequate funding of those 
programs, they can achieve the goals of reducing adolescent 
smoking rates by 60 percent in ten years, which is the goal 
that most Members of Congress and advocates have accepted or 
induce most current smokers to quit.
    The combination of large-scale epidemiological studies in 
laboratories on the addictiveness of nicotine have been 
critical in creating a public awareness of the dangers of 
smoking, particularly of initiation, and having to force the 
tobacco companies to accept the responsibility for public 
health disaster of the first order.
    NIDA funding provided the initial research leading to the 
development of nicotine patches, and NIDA and other NIH 
institutes have improved the efficacy of gums and patches as 
replacement therapies. These advances have enabled large 
numbers to give up tobacco smoke, smoking.
    But given the time it takes to test and implement new 
programs, the 10-year goals require substantial immediate 
investments in research. Thank you for providing this 
opportunity to testify.
    Mr. Porter. Dr. Reuter, I suggest--and this is not 
scientifically verifiable, either--that perhaps the reason for 
the rise in the use of drugs and tobacco relates to what our 
young people see on television, what our celebrities, sports 
figures, and public figures stand for in their minds, and role 
models that are positive and lead to positive behavior I think 
are terribly important for young people. Often we see only bad 
evidence of bad character, and maybe that is what is affecting 
these kinds of behaviors.
    Mr. Reuter. I'm sure you're right----
    Mr. Porter. And I'm not referring to anything current; I'm 
simply saying this is often what we see, and I think it sends 
all the wrong signals. It's the nature of our media. You never 
see the good things; you only see the bad.
    Mr. Reuter. Bad news is much more interesting----
    Mr. Porter. Yes.
    Mr. Reuter [continuing]. As the last week has suggested.
    Mr. Porter. I'm afraid so. Thank you for your testimony.
    [The prepared statement of Peter Reuter follows:]


[Pages 642 - 649--The official Committee record contains additional material here.]



                                        Thursday, January 29, 1998.

                                WITNESS

PHYLLIS GREENBERGER, SOCIETY FOR THE ADVANCEMENT OF WOMEN'S HEALTH 
    RESEARCH
    Mr. Porter. Phyllis Greenberger, executive director of the 
Society for the Advancement of Women's Health Research, 
testifying in behalf of the Society. It's nice to see you.
    Ms. Greenberger. Well, I was going to say ``good morning,'' 
but it's afternoon.
    Mr. Porter. Yes, I'm sorry, we are really running so late 
here.
    Ms. Greenberger. Good afternoon to you, Mr. Chairman. I 
thank you very much for the opportunity to testify.
    As noted, I'm the executive director of the Society for the 
Advancement of Women's Health Research, and we're the only 
national organization committed to improving women's health 
through research, and I'm here today to voice our support for 
increased funding for a variety of women's health research 
programs.
    I'd like to begin by saying that we support, needless to 
say, many of the previous statements regarding the increases in 
the funding for the National Institutes of Health. I'm sure it 
hasn't gone unnoticed that many of the conditions that were 
mentioned to you this morning--from Interstitial Cystitis, 
fibromyalgia--disproportionately affect women, and so, 
obviously, this is an area that we're most concerned about and 
request your support.
    And what we support, obviously, are these increases across 
the Institute for these conditions. You will,obviously, be 
hearing from many more of these in the next few days, and we want to 
talk about another area that we feel that really includes all of them, 
and so that we are not separating out women's diseases from men's 
diseases or one institute from another.
    You may be aware that women's health research is moving 
into a new era, and that is, it's branching out to look at 
gender-based differences at the cellular and the molecular 
level. Researchers are discovering the roles hormones play in 
the development of various organs and the etiology of diseases, 
and understanding these gender differences and their 
implications for clinical care will likely find results 
beneficial to both genders.
    There have been several recent examples of gender 
differences. I'm sure your aware of the differences in 
cardiology. We all recognize differences in neurology and 
immunology, and we are just realizing that these differences 
exist. As I know you know, for many years we weren't looking at 
these differences between genders, and we weren't including 
women in clinical trials systematically, and so these 
differences went unnoted. But now that we know that they do 
exist, we need to encourage research in these areas and 
understand the implications.
    The Office of Research on Women's Health provides a unique 
focus at NIH in accord with its mandate to, I quote, ``develop 
an integrated strategy for increased research into diseases, 
disorders, and conditions that are unique to, more prevalent 
among, or more serious in women, and for which there are 
different risk factors of interventions for women than for 
men.''
    The office also provides a pivotal point for communications 
among the institutes and centers for proactively developing 
multiple disciplinary research opportunities for women's health 
research, as well as ensuring the inclusion of women and 
minorities in clinical trials across the institutes, and we 
commend the NIH on its extraordinary recent discoveries in 
genetics and cancers predominantly affecting women. While there 
are numerous conditions that need attention--and, as I said, 
will be addressed before this committee--I would like to just 
emphasize one which actually was mentioned by Judy DeSarno 
earlier, but I'd be remiss if I didn't.
    As a member of the Presidential Advisory Committee on HIV/
AIDS, we urge the NIH to expand its research portfolio in the 
area of microbicides to help prevent the spread of HIV 
infection and other sexually-transmitted diseases. There is a 
great need to develop contraceptives and microbicides that are 
unnoticeable, fast-acting, inexpensive, safe, and effective.
    To accommodate the health needs of the population for 1999, 
we recommend overall increases of 15 percent for the women's 
health budget and the NIH as a whole, tying the Office of 
Research, Women's Health, to the overall NIH addition in 
funding.
    In addition to the NIH, AHCPR actually has been mentioned, 
but we'd like to mention that for a moment again, but also a 
couple of other agencies that have not been mentioned. I'm sure 
you know that in the Office of Women's Health, recently, the 
last two years, there has been funding for centers of 
excellence within the Public Health Service, and the Society 
would like to recommend doubling the funding for that.
    There is a great need to leverage resources within academic 
health and medical institutions, and this program provides the 
development of a multidisciplinary research agenda on women's 
health issues and comprehensive and integrated health care 
services for the special needs of women. It also provides 
public and health professional education and training.
    The Agency for Health Care Policy and Research, as I 
stated, has been mentioned previously by Dr. Lurie and Dr. 
Hobbs, but we would like to emphasize that as well. Despite 
improvements, women still lag behind men in quality of care and 
access to health services. For them, in particular, the work of 
AHCPR is vital.
    For example, the agency is supporting the study that looks 
at the widely-reported differences in medical treatments--
specifically, cardiac procedures--for women and men, and 
patients of different races. To continue to implement this 
agenda, the Society would like to recommend a 20 percent 
increase in funding for AHCPR.
    I'm going to quickly run through this. I'd like to mention 
an area that has only been mentioned briefly, and that is the 
Center for Disease Control and Prevention, Office of Women's 
Health. This agency ensures that women's health and prevention 
needs are addressed, and it's committed to projects that 
address gaps in CDC programs and differences among 
subpopulations of women.
    Again, we recommend a 15 percent increase in CDC funding, 
and I don't have to tell you--and I have statistics here which 
you already know--an ounce of prevention is worth a $1,000 in 
cure. So we all know that we need prevention, and we need to 
strengthen the CDC, and particularly, obviously, as a women's 
health research organization, we are concerned about the 
implications for prevention in the area of women's health 
research.
    I appreciate the opportunity to testify. Obviously, my 
complete remarks will be, hopefully, entered into the record.
    Mr. Porter. Yes, they will.
    Ms. Greenberger, Ms. Lowey and Ms. Pelosi have 
beenwonderful advocates for women's health research, and I know that 
when we go to mark up the bill, they will be right there along with 
others on the subcommittee, because this is a subject of great concern 
to us.
    Ms. Greenberger. We appreciate that, and we very well know 
Congresswomen Lowey's and Pelosi's and DeLauro's support as 
well as yours for these areas, and we very much appreciate it.
    Mr. Porter. Thank you very much for testifying.
    Mrs. Lowey. Mr. Chairman, just briefly----
    Mr. Porter. Ms. Lowey.
    Mrs. Lowey. I just want to take the opportunity, actually, 
to thank our chairman. The chairman has been probably the 
strongest advocate for funding for the National Institutes of 
Health, and obviously, as we are making these difficult 
choices, we should all continue to work as hard as we can to 
increase the investment in the National Institutes of Health, 
thereby allowing greater investment in so many of the areas 
where we care passionately about, and that you testified about.
    I want to thank you and the Society for Women's Health for 
your strong advocacy, because you have been very vital in this 
effort, and in putting together a board of first-class 
scientists, you have been very helpful to us in helping us 
establish our priorities. So I want to thank you, Phyllis, and 
the Society for your leadership in this critical area.
    I thank you, Mr. Chairman.
    Mr. Porter. I did not mean to leave out Ms. DeLauro. We 
missed her for two years, and then she's definitely back.
    Thank you so much.
    Ms. Greenberger. Thank you very much.
    [The prepared statement of Phyllis Greenberger follows:]


[Pages 653 - 659--The official Committee record contains additional material here.]



                                        Thursday, January 29, 1998.

                                WITNESS

DAVID BECK, CHAIR, ASSOCIATION OF INDEPENDENT RESEARCH INSTITUTES
    Mr. Porter. Last, but certainly not least, Dr. David Beck, 
Chair, Government Relations Committee, and immediate past 
president, Association of Independent Research Institutes, and 
president of the Coriell Institute for Medical Research in 
Camden, New Jersey, testifying in behalf of the Association of 
Independent Research Institutes. Dr. Beck.
    Mr. Beck. Thank you, Mr. Chairman. On behalf of the 
Association of Independent Research Institutes, abbreviated 
AIRI, I thank you for the opportunity to testify before you 
today and to help build the record that will enable you to 
carry yours and the committee's passion on health research to 
the full Congress.
    AIRI is an association of not-for-profit research 
institutes that conduct basic and clinical research in the 
biomedical and behavioral sciences. Our institutes receive 
about 10 percent of all of the NIH extramural funding, as well 
as extensive funding from other Federal and private agencies, 
foundations, and corporations. AIRI are distinct from other 
organizations involved in biomedical research in that our 
primary mission is research. I am here not only as a 
participant in the biomedical research enterprise, but also 
because I believe passionately the potential of the work that 
we are doing has to provide enormous benefits for the Nation's 
health and for its economy.
    Mr. Chairman, over the past few years, you and your 
subcommittee have stood firm in your support of NIH and its 
mission, and your faith has been rewarded by the extraordinary 
progress in understanding the processes of life that you have 
heard about so many times before you today and at other times. 
We ask you to demonstrate your support once again for the work 
of NIH by providing a 15 percent increase in funding for the 
Fiscal Year 1999, as called for by the Ad Hoc Group for Medical 
Research Funding. We at AIRI support the Ad Hoc Group's 
position that sustained funding, sustained growth in funding, 
for the NIH is needed to capitalize on past scientific 
achievements, address present medical needs, and anticipate 
future health challenges. This sustained growth that we are 
seeking, beginning with a 15 percent increase and culminating 
with a doubling of the NIH budget, is needed not merely to 
accelerate the pace of research, but the fundamental way 
science is being done is being revolutionized. Science will 
require new investment in new technologies, new infrastructure, 
and personnel with new sets of skills. This investment is 
necessary to ensure that the research community can take full 
advantage of these new approaches to discovery.
    AIRI members know firsthand what has been accomplished with 
NIH research, and we know how much more can be done with 
additional NIH funding. I would like to cite for you just afew 
examples of successes achieved at AIRI institutions with NIH support 
over the last year.
    At the Whitehead Institute in Cambridge, Massachusetts, Dr. 
Peter Kim produced the first picture of a protein that enables 
the AIDS virus to invade human cells, work that has immediate 
implications for new drug design.
    At the Oklahoma Medical Research Foundation in Oklahoma 
City, researchers have been able to establish a powerful 
association between the Epstein-Barr virus and lupus, a serious 
autoimmune disorder.
    At the Neuropsychiatric Institute in Fargo, North Dakota, 
researchers are evaluating the importance of taste preference 
in determining the vulnerability to substance abuse.
    At the John B. Pierce Laboratory in New Haven, Connecticut, 
researchers are working to determine the means by which cells 
lining the blood vessels' walls communicate with each other to 
convey messages about blood flow, thus, acting to prevent 
blockages such as might lead to stroke.
    And at the Coriell Institute for Medical Research and the 
Wisstar Institute in Philadelphia, Coriell cells, human cells 
which were developed by us jointly, were carried into space 
last week on the Space Shuttle Endeavor and are being grown as 
we speak on the Space Station MIR to study the effects of 
microgravity on human cell growth.
    Being thoroughly cognizant of your sermonette regarding the 
budget allocation process, I urge your support for the Ad Hoc 
Committee's budget proposal for NIH, and I thank you deeply for 
the opportunity to appear before you today.
    Mr. Porter. Dr. Beck, thank you so much. We're sorry that 
you had to wait so long and we got so far behind. I'll try to 
do better in the future, is all I can say, and obviously, we'll 
try to do our very best to meet the terms of your testimony in 
terms of funding for research.
    Mr. Beck. It was a very valuable opportunity for me to be 
convinced that the basic research the AIRI Institutes do is 
even more valuable than we thought it was because it cuts 
across so many areas and so many of the stories, the powerful 
stories you heard today, are benefitted by the research that we 
do. A single research project can benefit many different 
diseases, and so basic research is truly the key, I believe.
    Mr. Porter. I will lobby you for another second. The 
American public needs to understand this. They need to know it 
specifically, and you need to get the message out. I need to 
get the message out--we all do--to them, as to why this is so 
important to their lives, to the lives of other people in the 
world, and to the country and its future.
    Mr. Beck. I agree completely.
    Mr. Porter. Thank you very much.
    [The prepared statement of David Beck follows:]


[Pages 662 - 671--The official Committee record contains additional material here.]



    Mr. Porter. The subcommittee will stand in recess until 
2:15 p.m.

                           Afternoon Session

    Mr. Bonilla [presiding]. The subcommittee will come to 
order.
    Chairman Porter will be along shortly, as will several 
other members on either side of the Chair, and Ms. DeLauro has 
arrived, I notice.
                              ----------                              

                                        Thursday, January 29, 1998.

                                WITNESS

LINDA CHAVEZ, CENTER FOR EQUAL OPPORTUNITY
    Mr. Bonilla. We will now begin hearing from our witnesses. 
As we begin the hearing, I want to remind witnesses of two 
provisions of the rules of the House. In addition to the 
written statement, nongovernmental witnesses must submit a 
curriculum vitae and a statement of Federal grant or contract 
funds they or the entity they represent had received. If you 
have any questions concerning the applicability of this 
provision or question as to how to reply, please contact the 
subcommittee staff.
    In order to accommodate as many members of the public as 
possible, we have scheduled over 20 witnesses for each session 
and still are not able to hear from all who wanted to testify. 
Overall, we will hear from over 200 witnesses in this segment 
alone. As a result, we must enforce the rule limiting testimony 
to five minutes very strictly, just in consideration for all of 
those who are appearing before us. I'd like to ask that, as you 
testify, you keep this limitation in mind in consideration for 
the other witnesses that will follow you. This year, we have 
started using a timer, which you'll hear a little noise output 
here when your time expires.
    At this time, I'd like to call Linda Chavez, president, 
Center for Equal Opportunity. Welcome, Ms. Chavez.
    Ms. Chavez. Thank you very much, Mr. Bonilla. On behalf of 
the Center for Equal Opportunity, I'm privileged to be here to 
testify this morning on an issue that I know concerns you and 
should concern all Members of the United States Congress, and, 
indeed, all United States taxpayers. It is an issue that 
affects 3 million limited-English-proficient children in the 
United States, and it has to do with the Office for Civil 
Rights' enforcement under the Lau decision of provisions for 
the teaching of limited-English-proficient children.
    As you know, Mr. Bonilla, in 1974 the Supreme Court decided 
that it was not enough simply to provide school children in the 
United States equal textbooks, the same teachers, and put them 
in the same classroom; that if those students did not speak 
English as their first language, that they needed to have extra 
help in order for them to be able to take advantage of the 
opportunity.
    Since 1974, the Office for Civil Rights at the Department 
of Health and Human Services--and the Department of Education--
has had a history of enforcing the Lau decision to require 
local school districts to provide not instruction in English, 
but rather instruction in the native language for hispanic 
children. I have submitted a written statement and included in 
that part of a chapter of a book I wrote on this subject, as 
well as two recent articles that I wrote for The Chicago 
Tribune.
    OCR's approach to the problem oflimited-English-proficient 
children has been to mandate native language instruction, and most 
recently, the Office for Civil Rights has threatened the Denver public 
school system with a potential cutoff of all Federal funds unless 
Denver ceases reforms in its program which would include the 
introduction of more English into the curriculum for limited-English-
proficient hispanic children in that school system. Indeed, there are 
more than a million hispanic children in the United States who are in 
programs that emphasize not the learning of English, but rather 
teaching in the native language. We might ask whether or not there is 
sufficient evidence to show that native language instruction is better 
than teaching children in English, and in fact we know that studies 
that have been done that look at the validity of all of the research in 
this area, show that in fact native language instruction does not 
provide better education opportunity to limited-English-proficient 
children.
    Christine Roselle and an associate of hers, Keith Baker, 
who was formally with the Department of Education, has in fact 
looked at a survey of 72 studies of the issue of limited-
English-proficient children that meet the normal scientific 
validation requirement and found that 78 percent of those 
studies show that teaching children in their native language is 
not only better for them than doing nothing, but that it may in 
fact be worse. The National Academy of Science just a year or 
so ago also took a look at the issue of how we teach limited-
English-proficient children and showed that there is simply no 
reason, looking at the literature, to assume that teaching 
children in their native language is in fact better for them.
    We also know from a tremendous amount of research that's 
going now on in the area of how human beings acquire language, 
the basic area of neurology, that the earlier that children are 
exposed to a second language, the greater the likelihood is 
that those children will, in fact, be able to fully incorporate 
the syntax, the vocabulary, the grammar of that second 
language. So there's simply no scientific basis for the Office 
for Civil Rights to be mandating the teaching of limited-
English-proficient children in their native language.
    Well, if there isn't research to show why this is being the 
best method, perhaps there are other agendas, and I would 
contend that there is, indeed, a political agenda here having 
nothing to do with the needs of limited-English-proficient 
children or with the research in this area. Norma Cantu, who is 
the Assistant Secretary for the Office for Civil Rights, for 
example, was a lead attorney with the Mexican-American Legal 
Defense and Education Fund. That has promoted the teaching of 
native language instruction, and in fact she was involved in a 
court suit that led to the Denver public school system adopting 
its native language program, and yet she is now the person who 
is in charge of determining whether or not changes in that 
program meet OCR's definition of a proper title VI enforcement.
    Also, the placement of children in these programs I believe 
is based more on a political agenda that is aimed at maximizing 
the number of children who are eligible. The criteria that's 
used by the Department of Education, and encouraged around the 
country, the criteria which looks not at the child, the 
language that the child speaks, but rather the language that is 
spoken in the home. So, for example, since I grew up as a young 
child in New Mexico with a grandmother and grandfather who 
spoke mostly Spanish to each other, I would have been eligible 
for such a program, even though that was not my language.
    Moreover, standardized test scores are then applied, and as 
you know, a standardized test score is simply a way of 
determining the bell-shaped curve of distribution of the 
children taking the test, and the Office for Civil Rights 
determines that if you score below the 40th percentile, that 
you are automatically eligible. Forty percent of all children, 
even those who are monolingual English, will by definition 
score below the 40 percentile. I think this is a serious issue, 
and one that this committee should be looking at, and I would 
urge you, in considering the appropriations for the Office for 
Civil Rights, that you take these issues under very, very 
serious advisement.
    Mr. Porter [presiding]. Ms. Chavez, I apologize to you for 
being delayed, and I thank my colleague, Henry Bonilla, for 
chairing the opening of the hearing. I didn't hear all of the 
testimony, but that part that I did hear I clearly and strongly 
agree with.
    At a time when young people in scientific judgment can 
learn a language easily, and if they aren't instructed in that 
language early, then the chances of doing so diminish. So it 
seems to me that you're going down a path that doesn't lead to 
success nearly as well, even with good intentions perhaps, and 
I think we're beginning to understand because people like you 
and Henry and others are speaking the truth about these 
matters. We're gaining an understanding that we have to change 
the principles underlying these programs.
    Ms. Chavez. Well, thank you very much, Mr. Porter.
    Mr. Porter. Thank you for coming and testifying.
    Mr. Bonilla.
    Mr. Bonilla. Thank you, Mr. Chairman.
    Ms. Chavez, as many people know, I'm an advocate of 
bilingual funds only to use in transitional cases to get kids 
to learn English as quickly as possible, and then to mainstream 
them. But this information that you're bringing forward to me 
is alarming. To think that an office couldhave their own 
political activist agenda is something that we're going to look at 
very, very closely this year.
    My question that I have briefly is: How does their agenda 
that originates in Washington, how does that relate in some 
cases with what the parents want their children to learn in 
school?
    Ms. Chavez. Mr. Bonilla, I will be happy to provide for you 
a copy, which I will ask be put in the record, of a survey that 
we did of hispanic parents nationwide. This was done through a 
reputable polling firm, an outstanding polling firm. The survey 
itself was taken in both Spanish and English.
    What we found is that more than 80 percent of the hispanic 
parents who were surveyed wanted their children to be taught 
English quickly. They wanted their children's lessons to be 
taught in English so they could be spending more time learning 
how to speak, read, and write English. This is in direct 
contrast to what the Office for Civil Rights is requesting.
    You also are, I'm sure, aware of the efforts that are going 
on in California to put an initiative on the ballot that will 
allow voters to make a determination about bilingual education 
in that State. My organization has been contacted by dozens of 
parents around the country, and in fact we will be providing to 
the committee written testimony from several of these parents 
in New Mexico, in California, and we hope also in Colorado, 
parents who object to what is being done with their children.
    One of the most frightening things that we hear is that 
parents who do object go to their school district, go to their 
school, and rather than being given an objective analysis of 
what is best for their children, they are simply told, ``We 
know what's best for your children. Juan and Maria need to be 
kept in a Spanish language class.'' In some instances we're 
talking about children who come to school with English as their 
first language, and yet they, too, are forced to be put into 
Spanish language classrooms.
    Mr. Porter. Ms. Chavez, we very much appreciate your 
testimony this morning. Thank you for being with us and giving 
us your view on this very important issue.
    Ms. Chavez. Thank you, Mr. Porter.
    Mr. Porter. I'd like to welcome a group of high school 
students from the tenth district of Illinois, which happens to 
be mine, and a visitor from Austria there, right back in the 
corner over here. Thank you all for sitting in with us and 
visiting.
    [The prepared statement of Linda Chavez follows:]
    [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.]


[Pages 676 - 685--The official Committee record contains additional material here.]



                                        Thursday, January 29, 1998.

                                WITNESS

DR. PETER SCHWARTZ, SOCIETY OF GYNECOLOGIC ONCOLOGISTS
    Mr. Porter. Dr. Peter Schwartz, president of the Society of 
Gynecological Oncologists, representing the Society.
    Ms. DeLauro.
    Ms. DeLauro. Yes. If I might just for a second, Mr. 
Chairman, with regard to the last panelist, I would hope that 
the committee would entertain information from both sides on 
the issue of bilingual education--there certainly are a lot of 
other people all over the country with various perspectives--
and make a determination as to what is in the best interest of 
our youngsters in this country. I know, in all your fairness, 
that you will do that.
    Mr. Porter. Ms. DeLauro, I apologize. I didn't know you 
wanted to be recognized.
    Ms. DeLauro. That's okay.
    Mr. Porter. I'm sorry.
    Ms. DeLauro. No, I thought that was not the case, Mr. 
Chairman, but I, while not being shy, I'd like to say what I 
was going to say anyway. [Laughter.]
    In any case, I have really a delightful task here, and that 
is that I am very, very pleased to be able to introduce to you 
today Dr. Peter Schwartz. I'm so delighted that he could spare 
some time to be with us today.
    Dr. Schwartz is chief of the Elvohaven Hospital Section of 
Gynecologic Ontology and the president of the Society for 
Gynecological Oncologists. He literally and truly is one of the 
Nation's premiere researchers in the area of cancer--over 100 
publications to his name, 136 to be precise.
    He has particularly focused on the areas of gynecologic 
cancers such as ovarian cancer, which has been overlooked for 
such a very long time. We still don't have, as the committee 
knows, and I know the chairman knows, a dependable test to 
detect ovarian cancer at early stages.
    Dr. Schwartz helped me to beat this disease, and he brings 
together a traditional commitment to patient care, which 
strengthened my own resolve, but with a confidence and 
professionalism and determination to explore every single new 
avenue in order to save lives. I know that he saved my life. I 
know that, with his commitment to increasing research, that 
we'll save so many others.
    I thank you for the opportunity to introduce him. I thank 
you, Dr. Schwartz, for being here today.
    Dr. Schwartz. Thank you, Congresswoman DeLauro and 
Congressman Porter. I am here today in my capacity as president 
of the Society of Gynecologic Oncologists, known as the SGO. 
The SGO is the only national medical specialty society devoted 
to the study and treatment of cancers of the female 
reproductive tract. The SGO has more than 750 members who 
specialize in providing comprehensive care for women 
withgynecologic cancers, including prevention, diagnosis, surgery, and 
all subsequent therapy.
    I'm extremely grateful for the opportunity to provide 
public witness testimony on behalf of the SGO in support of 
increased funding for the National Institutes of Health, and 
particularly the NCI. The written testimony I have submitted 
focuses on the instances of cervical, endometrial, and ovarian 
cancer and provides some examples of how additional research 
dollars are critically needed to improve prevention, diagnosis, 
treatment, and survival for the estimated 82,000 women who were 
diagnosed with a gynecological cancer in 1997.
    My remarks this afternoon, however, will focus on ovarian 
cancer. Ovarian cancer causes more deaths than any other cancer 
in the female reproductive system. In 1997, an estimated 26,800 
new cases of ovarian cancer were diagnosed, and an estimated 
14,200 women died from ovarian cancer.
    While early detection improves the chances that ovarian 
cancer can be treated successfully, early cancers of the 
ovaries rarely cause symptoms that women would notice or the 
symptoms are mistaken for menopausal ailments or intestinal 
illnesses. Early detection is complicated by the fact that the 
ovaries are deep inside the pelvis and cannot be seen directly 
without surgery. Small ovarian tumors are difficult for even 
the most skilled examiners to feel. In fact, there are no 
screening tests now available which are accurate enough to use 
in finding ovarian cancer early among women who have no 
symptoms.
    Unfortunately, almost 70 percent of women with ovarian 
cancer are not diagnosed until the disease is advanced in 
stage. The five-year survival for these women is only 15 to 20 
percent.
    More than ever, there's a need for greater awareness and 
understanding of ovarian cancer. Now is the time to establish 
an agenda for more research into the areas that will lead to 
improved prevention, detection, and treatment of ovarian 
cancer.
    The PHS Office on Women's Health, the SGO, and the NCI, in 
an effort to put ovarian cancer at the forefront of our 
Nation's cancer research agenda, sponsored a strategic planning 
cancer conference on new directions in ovarian cancer research 
on December 8 and 9, 1997 in Washington, D.C. The purpose of 
the conference was to outline the priorities for ovarian cancer 
research over the next five years. The conference participants 
identified the following eight critical components as the 
priorities for the strategy for attaining a greater 
understanding of the disease and for which a commitment to 
increased funding and investment in biomedical research should 
be pursued.
    The first critical component is to support greater 
educational efforts for both the physician and patient 
communities. Due to the fact that early detection of ovarian 
cancer is so difficult and warning signs are so often confused 
with symptoms of other types of abdominal or pelvic ailments, 
it is essential that primary care physicians and gynecologists, 
as well as their patients, become aware of the potential early 
warning signs.
    The second critical component is support for the 
development of a solid infrastructure for the study of ovarian 
cancer. Increased funding for ovarian cancer research is 
essential not only for RFAs and the creation of a specialized 
program of research excellence, otherwise known as a SPORE, but 
also for the recruitment and retention of young investigators 
as well as trained investigators from other fields. Innovative 
mechanisms to protect time for clinical scientists to conduct 
research are crucial, especially in the managed care 
environment that medical professionals now must practice in.
    The third critical component is support for tissue 
procurement and banking. Tissue procurement and banking is an 
intrinsic part of clinical trials. By standardizing tissue 
collection and storage, we can then gather epidemiologic and 
follow-up data on ovarian cancer and correlate this data with 
molecular biological studies on the banked tissues.
    The fourth critical component is support for identification 
of all genes expressed in ovarian cancers at all stages of the 
disease. This will facilitate the identification of molecular 
prognostic indicators, the identification of tools for early 
diagnosis, and the elucidation of the etiology of ovarian 
cancer.
    The fifth critical component is support for the collection 
of data to evaluate the utility of current tumor markers such 
as CA-125 and current diagnostic imaging modalities on 
mortality of ovarian cancer in a multinational, randomized 
trial.
    The sixth critical component is support for the development 
of a cohort study of patients at a genetically high risk for 
ovarian cancer.
    The seventh critical component is support for an ongoing 
multinational evaluation of conventional therapy approaches to 
ovarian cancer.
    And, finally, the eighth critical component, support for 
the development and evaluation of novel investigative 
approaches to ovarian cancer.
    Congressman Porter, Congresswoman DeLauro, members of the 
subcommittee, I greatly appreciate your time and attention to 
the need for additional resources for research being conducted 
for improved prevention, diagnosis, and treatment for 
gynecologic cancers. The SGI and I look forward to working with 
you in the years ahead on behalf of women andtheir reproductive 
health.
    I'd be happy to answer any questions.
    Mr. Porter. The tyranny of the bell, Dr. Schwartz.
    Dr. Schwartz. I hear it. [Laughter.]
    Mr. Porter. Sorry, this is a new innovation for all of you 
who are testifying for the first time. We have not done this in 
the past. I don't know whether you had announced, Henry, that 
we were doing this. All right. Well, the reason is that it's 
simply because we have so many witnesses that want to testify.
    Dr. Schwartz, you realize, I know, that this subcommittee 
has placed biomedical research at a very, very high priority in 
our deliberations, and you also know that Ms. DeLauro has been 
a leader on the subcommittee in pushing us on cancer research, 
and I know she will be in the future about any questions.
    So thank you very much for coming to testify. Thank you so 
much, sir.
    Dr. Schwartz. Thank you.
    [The prepared statement of Peter E. Schwartz, M.D., 
follows:]
    [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.]


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



                                        Thursday, January 29, 1998.

                                WITNESS

DR. ERROL CROOK, AMERICAN FEDERATION FOR MEDICAL RESEARCH
    Mr. Porter. Dr. Earl Crook, associate professor at the 
University of Mississippi Medical Center, testifying in behalf 
of the American Federation for Medical Research.
    Mr. Wicker.
    Mr. Wicker. Thank you, Mr. Chairman, and members of the 
subcommittee. It is my pleasure today to introduce to the 
subcommittee a very distinguished citizen of the State of 
Mississippi. Dr. Errol Crook is a native of Monrovo, Alabama. 
He received his undergraduate degree from Yale, and did his 
medical school at Columbia. He is currently an associate 
professor at the University of Mississippi Medical Center in 
Jackson, where he has conducted extensive research in the areas 
of diabetes and hypertension.
    Members of the subcommittee, you will soon realize why we 
are so delighted to have him at the University of Mississippi. 
Dr. Crook is going to testify today on behalf of the American 
Federation for Medical Research, and to discuss the challenges 
facing clinical research.
    Mr. Porter. Dr. Crook, we welcome you. Thank you very much 
for coming to testify.
    Dr. Crook. Thank you, Mr. Wicker, for your kind 
introduction.
    Good afternoon to the committee and Chairman Porter. The 
AFMR welcomes the opportunity to testify here today about the 
challenges confronting our Nation's clinical research effort.
    I am Errol Crook, assistant professor of medicine. I wish I 
were an associate, and I will be soon, I hope--at the 
University of Mississippi School of Medicine. The American 
Federation of Medical Research is a national organization of 
over 6,000 physician scientists, primarily medical school 
faculty members who are engaged in basic, clinical, and health 
services research.
    Our organization wants to express its deep appreciation for 
this subcommittee's strong support for the National Institutes 
of Health. However, it is important to assure that a 
significant portion of these additional funds be allocated to 
much-needed initiatives to strengthen NIH extramural clinical 
research programs. We commend subcommittee members Lowey, 
Wicker, Hoyer, Pelosi, and DeLauro for their leadership in 
sponsoring H.R. 3001, the Clinical Research Enhancement Act, 
authorizing additional funding for new clinical research, 
career development, and research project awards. The AFMR urges 
this subcommittee to move forward this year and propose 
additional NIH funding to revitalize our Nation's clinical 
research efforts.
    Through clinical research, basic science discoveries are 
applied to the study of human physiology to research on a 
disease or a condition or do an initial study of a potential 
therapeutic intervention. It is critically important that steps 
be taken immediately to address the problems confronting 
clinical researchers and their patients. These include the loss 
of a generation of young clinical investigators faced with 
enormous medical school tuition debt and absence of a 
structured, well-supported training and career development 
program; the inability of academic medical centers to sustain 
internal mechanisms of support for clinical research because of 
cost containment required by fierce competition in the health 
care marketplace, and the declining infrastructure for clinical 
research, most notably the insufficient funding provided to the 
NIH-funded general clinical research centers.
    Funding is extremely limited for clinical research that may 
not offer a product payoff. Today, and for the foreseeable 
future, such research requires NIH funding. In addition, NIH 
funding is critically important for the training and career 
development of clinical investigators. In collaboration with 
Jackson State University and Tougaloo College, we at the 
University of Mississippi Medical Center are initiating a major 
study of cardiovascular disease in African-Americans, the 
Jackson Heart Study.
    Our major difficulty in mounting and continuing this 
National Heart, Lung, and Blood Institute-sponsored study will 
be to recruit and sustain a sufficient cadre of clinical 
investigators to oversee the effort and interact with the 
patients.
    In September of 1994, the Institute of Medicine of the 
National Academy of Sciences published a report on the 
opportunities and challenges confronting clinical research. The 
Institute recommendations are the foundation of the Clinical 
Research Enhancement Act, H.R. 3001.
    More recently, in December of last year, the NIH Director's 
Advisory Committee on Clinical Research presented its report 
offering similar recommendations. Attachment 1, in the written 
testimony, is a side-by-side analysis demonstrating the close 
concurrence between H.R. 3001 and the Advisory Committee's 
recommendations.
    The AFMR believes that this subcommittee must take action 
to provide additional funding for the initiatives that have 
been recommended by the Institute of Medicine, the NIH 
Director's Advisory Committee, and the 140 organizations that 
support H.R. 3001. This would require an additional $60 
million, which is less than one-half of a percent of the NIH 
budget.
    In addition, the AFMR urges the subcommittee to take steps 
to increase substantially funding for the NIH-sponsored general 
clinical research centers across the country. These safe havens 
for clinical research are vitally important. Last year, in the 
report accompanying the Fiscal Year 1998 appropriations bill, 
this subcommittee expressed concern about the reductions made 
in the DCRC grants below Advisory Council-approved budgets. The 
subcommittee requested a report from the National Center on 
Resources as to the funding necessary to bridge this gap. For 
Fiscal Year 1999, the AFMR recommends a $215 million budget to 
bridge the average 25 percent cut below the Advisory Council-
approved budgets for the general clinical research centers and 
to stabilize funding for personnel and training.
    Please do not delay further. Just as you would move forward 
to rebuild the clinical research capacity on the NIH campus, 
please forward this year with much-needed investment in the 
extramural clinical research capacity of our Nation's academic 
medical centers.
    Thank you for the opportunity to testify. I'd be happy to 
answer any questions.
    Mr. Porter. Dr. Crook, thank you for your testimony. Let me 
say that the Chair does not, as a matter of principle, co-
sponsor legislation that might appear before this committee, 
even though members of the committee don't share this 
philosophy. So the fact that I'm not a co-sponsor of H.R. 3001 
doesn't mean that I'm not necessarily for it or strongly for 
it.
    The problems that you raise of attracting new investigators 
and young investigators and keeping them, protecting academic 
medical centers, clinical research centers, who are under siege 
because of the change in the way we deliver health care 
services in the United States, managed care looking elsewhere 
because of the costs for a lot of their contracts--those are 
problems that we're very much aware of and want to be helpful 
on, and of course your final point about the clinical research 
centers and their funding is one that we take very seriously 
and we'll do the very best we can.
    Dr. Crook. Thank you.
    Mr. Porter. Thank you very much for testifying today.
    Dr. Crook. Thank you.
    [The prepared statement of Errol Cook follows:]


[Pages 698 - 710--The official Committee record contains additional material here.]



                                        Thursday, January 29, 1998.

                                WITNESS

JANNINE CODY, CHROMOSOME 18 REGISTRY AND RESEARCH SOCIETY
    Mr. Porter. Jannine Cody, president, the Chromosome 18 
Registry and Research Society, testifying in behalf of the 
Society. Ms. Cody.
    Mr. Wicker.
    Mr. Wicker. Thank you, Mr. Chairman.
    Let me just briefly say that Dr. Cody is from San Antonio 
and is almost a constituent of my colleague, Henry Bonilla, a 
few miles away from the district there. She's currently a post-
doctoral fellow at the University of Texas, San Antonio, where, 
as you say, she's conducting research on chromosome 18 
disorders.
    I very much appreciate, Mr. Chairman, your moving Dr. Cody 
forward on the agenda this afternoon, so that I could be here 
for her testimony.
    I have a particular interest in this disorder, and I think 
that some of the special voices that we may be hearing in the 
audience today are part of Dr. Cody's team. Some dear friends 
of mine from Mississippi, Lyle and Ruth Ann Williams, have a 
grandson, Michael Byce, born with chromosome 18 disorder. So I 
have a particular personal interest in this disease and in the 
testimony this afternoon.
    Thank you so much.
    Mr. Porter. Thank you, Mr. Wicker.
    Dr. Cody.
    Ms. Cody. Okay, thank you very much, Mr. Chairman 
andmembers of the subcommittee, and Mr. Wicker. Thank you for allowing 
me this opportunity to come here today and share some of our concerns 
with you.
    My name is Jannine Cody, and I'm founder and president of 
the Chromosome 18 Registry and Research Society, the support 
group for families affected by chromosome 18 abnormalities. I 
live in San Antonio, Texas, as he said, and I'm accompanied by 
members of our board of directors from Chicago, Detroit, and 
some of our families that live in the D.C. area.
    We're here today to ask you to re-evaluate the NIH funding 
priorities. Nationally, in our fervor to alleviate suffering 
and to ensure a long and healthy life, we've ignored our most 
needy and vulnerable citizens. We have focused our medical 
research efforts on prolonging the end of life without equal 
commitment to giving the people with mental retardation and 
developmental disabilities a complete life, a life of dreams 
and promise, and a life of independence instead of dependence.
    Thirteen years ago, my daughter, Elizabeth, was born--
here's her picture--with a severe cleft palate and cleft lip 
and foot abnormalities. A blood test revealed that these 
problems were caused by a chromosome abnormality called 18q-. 
This is a mental retardation syndrome caused by a missing 
portion of chromosome 18. The pediatrician gave us a photocopy 
from a medical textbook which made the following observation 
about our kids with 18q-:
    It said, ``They are probably the most severely afflicted 
among carriers of chromosome abnormalities. They maintain the 
froglike position observed in infants and are reduced to an 
entirely vegetative and bedridden life.''
    But for us, our most immediate concern was repair of her 
cleft lip and palate, and to date she's had 12 surgeries and is 
about at the halfway point in the repair process. However, her 
first four surgeries, all before the age of 3, were complicated 
by her failure to heal properly. We now know that her healing 
problems were caused by growth hormone deficiency which also 
causes short stature. The eight surgeries she's had since being 
on growth hormone replacement therapy have healed perfectly.
    She's had to face numerous surgeries to repair the 
complications resulting from her early failed surgeries because 
no one ever asked a simple question: Why are kids with 18q-
short? So because of Elizabeth, growth hormone deficiency is 
now known to be a common feature of the 18q-syndrome, and 
hopefully, no child will ever have to endure the pain and 
trauma of unnecessary surgery and abnormal scarring.
    It was this finding in my daughter that spurred me to find 
other parents and to see that research is done to determine the 
nature of our children's problems. I started the Chromosome 18 
Registry and Research Society in an effort to bring families 
together who are affected by chromosome 18 abnormalities.
    In order to ensure that the research done on these 
syndromes is clinically relevant and is translated into patient 
useful information, I earned a Ph.D. in human genetics, working 
on the 18q-syndrome. Our goal is to find treatments and not 
just supportive care for our children.
    One of our main organizational goals is to establish a 
chromosome 18 clinical research center. We thought that if we 
as parents could gather preliminary data on the study of each 
of these syndromes, then these projects could move on to be 
federally funded. We would just have to get the ball rolling.
    Our families have invested more than $700,000 to generate 
preliminary results and this has not been enough. It's not been 
enough because the pot of NIH money available to study these 
syndromes in the Mental Retardation branch of the NICHD is 
disproportionately small. It is disproportionately small 
compared to the number of people affected by mental retardation 
and disproportionately small compared to the proportion of 
mental retardation caused by chromosome abnormalities. Details 
about the budgetary inequities and social burden are presented 
in my written testimony.
    Since 50 percent of mental retardation is caused 
bychromosome abnormalities, and chromosome abnormalities have defined 
genetic etiology, they are the logical starting place for unraveling 
the mysteries of learning differences and mental retardation. The study 
of chromosome abnormalities could open many new vistas in cognitive 
neuroscience. What we would like for you to realize is that, by 
studying chromosome abnormalities, you would not just be helping our 
families, but you would be opening the door to understanding mental 
retardation and developmental disabilities.
    Chromosome abnormalities can serve as the key to 
understanding mental retardation and fulfilling the promise of 
the human genome project, which has provided us with the 
scientific opportunity. With the promise of increased NIH 
funding in the air, please consider directing those funding 
increases in ways which will equalize research for the 
currently underserved populations, such as those with mental 
retardation and chromosome abnormalities. These are areas of 
research which have great scientific promise in a field where 
there is currently little expenditure. These syndromes carry a 
significant social burden with lifelong health care costs and 
entitlement costs.
    Thank you for the opportunity to testify before you today. 
I will be happy to answer any questions.
    Mr. Porter. Dr. Cody, this subcommittee wants to do 
everything it can to help, and I think that the subcommittee 
has in the last three years, in the face of very difficult 
budgetary times, has put biomedical research at a very high 
level in the priorities that we fund.
    Ms. Cody. We appreciate that very much.
    Mr. Porter. I have to give you my sermonette at this point 
in time, all of you, because what we can do depends in the 
first instance upon what the Budget Committee gives us to work 
with. We're delighted to have you here telling us what we 
should do, but we want to direct you also to tell the Budget 
Committee what they should do.
    Ms. Cody. Okay, we will do that.
    Mr. Porter. Because if we don't get that kind of 
allocation, we can't do----
    Ms. Cody. Right.
    Mr. Porter [continuing]. The work that we think is 
necessary to be done.
    There is obviously a lot in what you said to us that 
touches our hearts, but there's also hope because there's so 
much wonderful science going on out there, that we can't come 
close to funding all of it, and what we need to do is fund more 
of it. So we, I think, are committed to doing that, but we need 
help to get the resources to actually accomplish it. So if I 
can lobby all of you, do your utmost to help us get the 
resources that we need to accomplish the kinds of goals that 
you want us to accomplish, and together I think we cando a 
great deal to give our research scientists the tools that they need to 
have the breakthroughs that will solve these problems for the American 
people, and all people, actually.
    So thank you for coming to testify.
    Ms. Cody. Thank you.
    Mr. Porter. We're going to do our utmost to do exactly what 
you want us to do.
    Ms. Cody. Thank you very much.
    [The prepared testimony of Jannine D. Cody follows:]
    [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.]


[Pages 714 - 721--The official Committee record contains additional material here.]



                                        Thursday, January 29, 1998.

                                WITNESS

ROSALIE LEWIS, DYSTONIA MEDICAL RESEARCH FOUNDATION
    Mr. Porter. Rosalie Lewis, the president-elect, Dystonia 
Medical Research Foundation, representing the Foundation.
    We're delighted to welcome our colleague, Louise Slaughter 
of New York. Thank you for joining us, Louise.
    Ms. Slaughter. Mr. Porter, Mr. Manzullo, I'm delighted to 
see you both.
    Mr. Wicker. Now just a minute.
    Ms. Slaughter. Oh, Mr. Wicker, I'm sorry. [Laughter.]
    I took my glasses off. Of course, I'm happy to see you.
    Mr. Wicker. I can take a lot of things. [Laughter.]
    Ms. Slaughter. Well, I'm so happy to be here with you this 
afternoon, and I want to help you, too, to get more money from 
the Budget Committee, because I know you and I talked about 
this before, but we are right on the cusp of so many 
extraordinary discoveries in health care and in medicine, and 
it would be a shame for us to starve it to death at this 
juncture.
    But I'm here this afternoon because I want to introduce a 
constituent of mine, Rosalie Lewis, who's the president-elect 
of the Dystonia Foundation, a research foundation. I've known 
her for many years, and all of us who know someone like Rosalie 
are very fortunate. She has dedicated herself to make a real 
difference in our community. She's been an active volunteer in 
the community for 20 years. She's leading the local chapter of 
the National Council of Jewish Women, speaking out and helping 
children with developmental disabilities, and encouraging 
support for families through organizations like the Jewish 
Family Services.
    The issue that is nearest and dearest to her heart is 
dystonia research. Mrs. Lewis has four beautiful children, 
three of whom have been diagnosed with dystonia. This heart-
breaking neurological disease can make walking and motor 
functions a serious challenge or renders them impossible. Mrs. 
Lewis has not only dealt courageously with her family's 
personal challenges of coping with dystonia, but has worked 
tireless to marshall resources to unlock the mysteries of this 
relentless and incurable disease. While researchers have 
recently made important advances in understanding dystonia, 
Mrs. Lewis is here to tell you why so much more needs to be 
done.
    So I'm proud to introduce Rosalie Lewis of Pittsburgh, New 
York, the president-elect of Dystonia, and say again my thanks 
to you and Congressman Wicker from Mississippi, one of our 
finest.
    Mr. Porter. Thank you, Representative Slaughter. We 
appreciate, Louise, your coming here and introducing Mrs. 
Lewis.
    Ms. Lewis.
    Ms. Lewis. Thank you very much, Congresswoman Slaughter, 
and hello again, Mr. Porter and members of the committee.
    I am Rosalie Lewis, president-elect of the Dystonia Medical 
Research Foundation. It's my pleasure to be here today to tell 
you a little bit about dystonia 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 1998 appropriations bill.
    In 1985, the first of the three of my four children with 
dystonia was diagnosed. I had hoped that my 20-year-old son 
Benjamin, who was affected by dystonia since the age of 7, 
could have joined me today. However, dystonia has robbed him of 
the ability to walk unaided, to use his hands for any fine 
motor coordination like writing or playing his beloved guitar, 
and has now made speaking difficult. Like Ben, my son Dan, who 
is 17, first exhibited symptoms of this disorder at the age of 
7, and like Ben, dystonia has now made walking independent a 
challenge.
    The progression of early-onset dystonia is relentless and 
uncontrollable. That is why, on behalf of the 300,000 other 
children and adults, I am asking you for your help today.
    Dystonia is a neurological disorder characterized bysevere 
involuntary muscle contractions and sustained postures. There are 
several different types of dystonia. Generalized dystonia afflicts many 
parts of the body and usually begins in childhood. My sons Benjamin and 
Daniel have generalized dystonia.
    Focal dystonias affect one specific part of the body. My 
son Aaron has a focal dystonia of the hand. Secondary dystonia 
is the result of injury or other brain illness.
    There is no definitive test for dystonia, and many primary 
care doctors have never seen a case of it. It is estimated that 
85 percent of those suffering with dystonia are not diagnosed 
or have been misdiagnosed.
    Treatment for dystonia includes drug therapy, botulinum 
toxin injections, and several types of surgery. However, these 
treatments are met with limited and variable success.
    My children with generalized dystonia take huge dosages of 
drugs, making cognition difficult. But with the choice between 
walking and not walking, they choose to tolerate the drugs' 
side effects. Daniel also receives injections now directly into 
his abducta muscles of the vocal cords with botox, and thank 
God, he has been having some moderate success.
    Since 1977, the Foundation has awarded over 285 medical 
research grants, totaling close to $15 million. Among the more 
significant results of this research are the discovery this 
past year of the DYT1 gene, which is the gene responsible for 
early-onset dystonia. In 1995, the identification of the gene 
for dopa-responsive dystonia. In addition, several drug 
therapies have been developed.
    The discovery of the gene for early-onset dystonia was made 
by Dr. Xandra Breakefield, geneticist at the Neuroscience 
Center of Massachusetts General Hospital in Boston, and her 
collaborators. This breakthrough came after two years of 
dedicated research and over $1 million of contributions made by 
the Foundation. With the discovery of this gene also came the 
identification of the protein which plays a crucial role in the 
chemistry of dystonia.
    One of the Foundation's central goals is to educate the lay 
and medical communities about dystonia, so that people 
afflicted with the confusing symptoms of this disease need not 
go undiagnosed or misdiagnosed, as is so common now. We also 
continuously conduct and promote Medical Awareness Week, which 
this year will be taking place between October 11 and 18.
    The Dystonia Medical Research Foundation recommends that 
the National Institutes of Health, the National Institute on 
Neurological Disease, Disorders, and Stroke, and the National 
Institute on Deafness and Other Communication Disorders be 
funded for Fiscal Year 1999 at a 15-percent increase over 
Fiscal Year 1998. This increase would be part of an overall 
request to double funding for the National Institutes of Health 
by Fiscal Year 2003. We would ask that this increase does not 
come from funding sources which would require budgetary cuts in 
other Public Health Service organizations.
    Your help is desperately needed. Dystonia is the third most 
common movement disorder after Parkinson's and tremor. I'd like 
to repeat that: Dystonia is the third most common movement 
disorder after Parkinson's and tremor.
    Hopefully, with the continuation of the necessary funding 
better therapies will be created which will help the hundreds 
of thousands of Americans who suffer from this debilitating 
disorder. Again, thank you for all the help that you have 
provided us in the past and for giving me the opportunity to 
speak here today. I would be honored if you had any questions 
whatsoever.
    Mr. Porter. Mrs. Lewis and Representative Slaughter, we are 
going to continue to do whatever we can to possibly raise the 
commitment to research that can mean that 15 or 20 years from 
now, or sooner, that there will be no more cases of this 
disease.
    I gave a short sermonette that I imagine you heard a minute 
ago. I want to add one thing to it. We often think that it's 
just the people here in this building that make public policy 
somehow, but we don't; we just ratify what people tell us back 
home. The message of this disease and others has to be gotten 
out there, so that people understand that it's such a serious 
matter that we need to mobilize national resources and that we 
need to put them into this kind of research. If we can all work 
on that--people intrinsically believe that, they have to know 
it specifically. They have to know why and how it's going to 
change things, and there's so much good science, as I said a 
minute ago, that is there. In fact, we are able to fund less 
and less of it, even though we're increasing funding more and 
more, because there's so much good science, that we need to get 
this message out to the American people that they need to 
impact each one of our offices saying: do this.
    This idea of increasing, doubling research funding over the 
next five years is really something that we believe in and want 
to see happen. If that happens, it will happen here.
    Ms. Lewis. Well, we're trying.
    Mr. Porter. You're trying; we're trying. If we all work on 
it, I think we can achieve that goal.
    Ms. Lewis. I appreciate that.
    Mr. Porter. Thank you for coming to testify.
    Ms. Slaughter. In the long haul, a healthier population 
will benefit us all, both financially and physically.
    Mr. Porter. Absolutely.
    Ms. Lewis. Thank you.
    Mr. Porter. Thank you very much. Thank you, Louise.
    Ms. Slaughter. It's a pleasure.
    [The prepared statement of Rosalie Lewis follows:]


[Pages 726 - 732--The official Committee record contains additional material here.]



                                        Thursday, January 29, 1998.

                                WITNESS

SCOTT HODGE, REPRESENTING HIMSELF
    Mr. Porter. Scott Hodge, the Grover M. Hermann Fellow, the 
Heritage Foundation, testifying in his own behalf. Mr. Hodge.
    Mr. Hodge. Thank you, Mr. Chairman, distinguished members 
of the committee. My name is Scott Hodge, senior federal budget 
analyst at the Heritage Foundation. As many of you may know, 
the Heritage Foundation is a nonprofit, nonpartisan research 
think tank. We accept no government funding whatsoever.
    I suppose it's safe to say that my testimony, the tone of 
my testimony today will be slightly different than much of that 
you've heard today. I suppose I sort of feel like a heretic in 
a church service, but I guess because I'm here to remind us of 
the need for fiscal responsibility during a period, a fortunate 
period, of balanced budgets. Remarkably, because of the 
increased growth of the economy, we are able to nearly balance 
the Federal budget four years ahead of schedule. But, sadly, 
rather than encourage greater fiscal discipline, we see in many 
quarters of this town a decrease in fiscal discipline and a 
willingness to increase Federal spending--most notably, in some 
of the proposals by the White House two nights ago.
    I think it would be a mistake to increase Federal spending 
and increase new programs without first fixing what ails 
existing programs. Balancing the budget is only the first step 
in fixing the fiscal health of the Federal Government. The next 
step must be reshaping Federal programs, so that they are 
capable of addressing the needs of the 21st century at the 
least possible cost to taxpayers. Too many government programs, 
as you know, were created to solve problems of another era, and 
reinventing these programs is not the answer. The American 
people do not want government programs simply to waste their 
money more efficiently. They want the problems fixed once and 
for all.
    Three years ago, as you know, this subcommittee showed 
great courage in proposing the termination of 170 programs 
because they either showed no positive results, they were 
redundant, or they should be performed by lower levels of 
government. This is exactly the kind of litmus test that every 
committee in appropriations should apply to all of their 
programs. This is the kind of courage that I think it takes to 
restore fiscal discipline in the budget.
    As you begin to craft this year's appropriations bill, I 
should hope that we can reinvigorate the themes that were 
brought forward so powerfully in that bill three years ago, and 
there are many challenges ahead. I believe discretionary 
spending should be cut, not increased. This year discretionary 
spending in this particular appropriations bill has increased 
by $5 billion above last year's level. That's 9 percent 
increase--three times the rate of inflation. I think that 
balancing should not be used as an excuse to raise spending. 
Actually, it should be a chance to tighten our belts a little 
more.
    Second, I don't believe the committee should fund programs 
that have not been authorized or in which their authorizations 
have expired. The Congressional Budget Office now tells us that 
Congress this year approved $115 billion for unauthorized 
programs in Fiscal Year 1998. Roughly $8 billion of that amount 
fell into the programs under the jurisdiction of this 
committee. If Congress had had the fiscal discipline perhaps 
not to fund just a fraction of those unauthorized programs, 
perhaps the budget would be in balance today, rather than $5 
billion deficit.
    Lastly, I believe the committee must confront the problems 
identified by the General Accounting Office, the agencies' 
Inspectors General, across these programs. The problems 
identified range from severe financial mismanagement, lack of 
management accountability, widespread program duplication and 
fragmentation, poor stewardship of government assets, and 
obsolete programs living on forever.
    Many of these, of course, are familiar to this committee, 
I'm sure. The 165 job training programs scattered across 
government agencies, 131 juvenile programs at a cost of $4 
billion a year. The President seems like he's ready to initiate 
more of these programs. Education, 788 programs, and counting. 
Statistical agencies, kind of an obscure little part of the 
budget, there are 70 different agencies in government that 
provide statistics, including many under this committee's 
jurisdiction.
    Lack of accountability is legendary in many of these 
programs, unfortunately. The safe and drug-free schools 
program, which many people would support, unfortunately, has 
seen monies misspent, such as in Michigan, where $81,000 was 
spent to purchase giant plastic teeth and toothbrushes. One 
point five million of this money was spent on a human torso for 
a class, and $11,000 of this money was spent on bicycle pumps.
    While that's the absurd, there are very serious issues at 
hand as well. In the job training and employment services, for 
instance, the General Accounting Office found that almost 40 
percent of Federal job training programs could not even count 
accurately how many people were going through their doors, and 
another 50 percent of these programs could not collect data on 
whether participants had obtained jobs after they completed the 
program. Of course, this is just the tip of the iceberg.
    Let me conclude by saying that the Heritage Foundation last 
year prepared ``Balancing America's Budget,'' which used many 
of the same themes that you used in preparing your 
appropriations report three years ago: reduce and 
eliminateobsolete programs, consolidate redundant programs, and 
transfer programs that are most appropriately done by the States back 
to State and local governments. I think this is a fine opportunity, 
with a balanced budget, to restore fiscal discipline rather than let it 
loose.
    Mr. Porter. Mr. Hodge, let me say that I couldn't agree 
more with the general theme of what you're saying. I began my 
congressional career talking about the framework of fiscal 
responsibility, and if we don't operate within that framework 
and make our decisions within that framework, obviously, we 
will have gone, as we have gone for the last 30 years, in a 
very, very poor direction for the whole country. Everything we 
do has to be done with an idea that we work off a balanced 
budget and that, within that budget, we choose priorities.
    We also know that government has grown without restraint 
for a long, long time, and we're doing a lot of things we 
shouldn't be doing. We have programs that the Federal 
Government shouldn't be engaged in. We have programs that the 
Federal Government is engaged in that don't work. I can tell 
you--and I think this is true on all the Appropriations 
subcommittees--the environment here has changed greatly. 
Everything that we talk today is: do we get results for 
people?--not how many people are in the program, how many 
dollars are spent, do we have so many centers. We talk about 
what happens to the individual who's supposed to be being 
served by that program. Is that individual starting unemployed, 
let's say? Is he getting trained? Is he getting a job? Is he 
keeping the job? Is he supporting his family? That's the thing 
we're looking for.
    We've just sent letters out, you may be interested, to each 
of the three Secretaries of the departments over which we have 
jurisdiction and each of the agency heads; we sent them out a 
couple of months ago actually, and we said, when you come in to 
testify, include in your testimony at the most prominent place 
the results that you're getting for the money that you're 
getting, because that's what we're going to ask you and that's 
what we want to know.
    We also have the GAO coming in to testify----
    Mr. Hodge. Right.
    Mr. Porter [continuing]. Looking at those programs that are 
under their jurisdiction and commenting, in their judgment, are 
they getting results from money? So we're doing it 
independently of the department or agency that is coming in to 
testify.
    GPRA we have been harping on a great deal last year; we 
will be on it this year. We're not to the results stage there, 
but I think the law is in place that will show us the budgetary 
guidelines that will help us get there eventually, and we're 
very strong on that.
    I think the subcommittee has shown that we know how to 
eliminate programs; you said so yourself.
    Mr. Hodge. Absolutely.
    Mr. Porter. There's programs that don't work. We have not 
been joined by our brethren and ``sistren'' in the Senate, as 
we would have liked to have been, but I think that we know that 
there are a lot of programs that really don't work and we do 
our best to try to get rid of them or consolidate them into 
broader programs that serve broader constituencies.
    I'm not sure--I am sure; I can't agree that we shouldn't 
fund programs that are not authorized. Unfortunately, 
authorizers don't do their work, and they see our bills as 
vehicles for their being able to put on policy choices that 
they wouldn't take up in their own subcommittees. They'll take 
them up on the floor in an amendment, but they never take them 
up in terms of a bill. So there's always this tension between 
authorizers and appropriators. We can't force them to do their 
work; they have to do. Programs should be authorized; the whole 
concept is to have authorized programs, but if we have to wait 
for them, I'm afraid nothing would ever get accomplished. They 
choose to avoid contention and put it onto our bills, where it 
raises its ugly head and we keep saying, leave these things off 
of our bills; do your own work, but we never get there.
    The careers legislation has passed the House strongly. That 
will get rid of all those 163 job training programs and get us 
into a few good ones that we can evaluate easily, that will 
reach out to people and give the help to them that they need, 
and get results.
    The bottom line on all of this is that our job is to choose 
within a framework of fiscal responsibility a balanced budget, 
priorities for our country, and so I don't think what you were 
saying is at all at odds with what people here are saying. 
They're simply saying, among those priorities, these are the 
ones we believe are the most important priorities. It's your 
job to take the responsibility for fitting them within that 
framework and making certain that we get ourselves to a 
balanced budget.
    I'd like to say that Congress has done so well that we've 
gotten to a balanced budget; we'd all be lying to ourselves if 
we said that. Congress has helped. What has gotten us to a 
balanced budget, and we're about to get there, I think, is a 
really strong economy that is performing beyond anybody's 
expectations, and we're all saying, how can we keep this thing 
going and make certain that it continues into the future? 
Because if it does, then we will have resources to do the kind 
of research that people are saying we really ought to do.
    In respect to biomedical research, this is something that 
really cannot be funded in the private sector. We'd like to 
think it could. It's basic research. It's not applied research. 
Most of it is basic research. It's the foundation upon which 
our pharmaceutical and biotech companies in America can build 
those pharmaceuticals, those procedures, those new ways of 
approaching disease that get results for people. So this is 
something government has to do. I think government not only has 
done this well over a long period of time, but it is an 
investment that pays for itself a thousand times over.
    I will mention only one thing that is mentioned often. The 
health care cost savings from the discovery of the Salk vaccine 
has paid all of the costs of the research conducted through NIH 
over its entire 50-year history, one discovery. If you look at 
the tens of thousands of discoveries that we've had through 
NIH-funded research, you know that this is really cost-
effective investment, and I think something that the American 
people very, very strongly support--but within a framework of a 
balanced budget. I sure agree with you.
    Thank you very much for your testimony. I'm sorry to give 
you my long sermon there----
    Mr. Hodge. I appreciate it.
    Mr. Porter [continuing]. But I think we're doing our job, 
or at least we're certainly trying hard to do it.
    Mr. Hodge. Thank you.
    [The prepared statement of Scott Hodge follows:]


[Pages 737 - 748--The official Committee record contains additional material here.]



                                        Thursday, January 29, 1998.

                                WITNESS

POLLY SPARE, VOICE OF THE RETARDED
    Mr. Porter. Polly Spare, president, the Voice of the 
Retarded, testifying in their behalf.
    The Chair recognizes Mr. Istook.
    Mr. Istook. Thank you, Mr. Chairman. I'll be very brief.
    I appreciate Ms. Spare taking the time to be with us today. 
Where do you come from, Illinois?
    Ms. Spare. No, my offices are in Illinois; I live in 
Pennsylvania.
    Mr. Istook. Okay, I understand. Your office is in Illinois. 
I knew that would be of interest to the chairman.
    Ms. Spare. I hope so.
    Mr. Istook. Ms. Spare has been involved in efforts on 
behalf of the retarded, both as a mother and as someone who 
cares very deeply about the needs and concerns of others who 
either are retarded or have retarded persons in their family or 
among their friends. I think she has an important message to 
make sure that our well-intended efforts don't become misguided 
efforts.
    I appreciate your taking time to be with us.
    Ms. Spare. Thank you, sir. I appreciate the introduction.
    Mr. Chairman, members of the subcommittee, I appreciate the 
opportunity to testify before you today about Voice of the 
Retarded and our experience with State protection and advocacy, 
developmental disability councils, and university-affiliated 
agencies. The issue of accountability among these groups has 
been of great concern to me, as president of Voice of the 
Retarded, as a parent of two profoundly retarded adult family 
members, and a tax-paying citizen who is painfully aware that 
my tax dollars may be financing activities aimed at eliminating 
developmental centers as one quality residential option from 
most disabled population.
    My concern stems from the fact that the three programs I 
had mentioned engage in activities that promote total 
deinstitutionalization. The litigation activities of protection 
and advocacy agencies are of most concern and have directly 
resulted in the closure of some State-operated facilities. I 
will continue to refer to the three groups as the DD Act 
programs. Established by the Developmental Disabilities 
Assistance and Bill of Rights Act, the DD Act, they are 
authorized to receive Federal funding through the Department of 
Health and Human Services: over $108 million in Federal dollars 
in 1997, the same amount, reportedly, for 1998.
    With all Federal grants, funding is appropriated with 
conditions imposed. There are two conditions of the act that I 
feel have not been met and warrant further investigation. The 
act's amendments of 1993 resulted in House Energy and Commerce 
Committee Report 103-378. Report language indicated that the 
act not be read as a Federal policy supporting the closure of 
residential facilities. The committee clarified what, in fact, 
mirrors VOR's mission. Many, but not all individuals with 
mental retardation are appropriately served in community-based 
residential settings. The act's statutory language under policy 
also places, as a condition for funding, the recognition that 
individuals and their families are the primary decisionmakers 
regarding the supports received and the policies developed on 
behalf of individuals with mental retardation.
    There is growing evidence that deinstitutionalization is 
not in the best interest of all individuals with MR. VOR is 
learning of higher abuse, neglect, and mortality rates for 
individuals inappropriately and hastily transferred from 
developmental centers to community-based centers. The national 
leaders of the DD Act programs, with the support of the former 
Commissioner of the Administration on Developmental 
Disabilities, Robert Williams, worked closely with VOR to 
address the lack of quality assurance standards and community 
programs. The progress that we made had less to do with 
communication and cooperation, but it was a worthwhile 
objective. Former Commissioner Williams also devoted agency 
funds for a more successful national project which I co-
chaired, aiming at empowering parents. We are truly grateful 
for his open mind and willingness to work with VOR to enhance 
mutual respect and a cooperative agenda.
    Some State DD Act programs continue to leverage their 
Federal dollars to help accomplish total 
deinstitutionalization. Protection and advocacy agencies have 
filed class action lawsuits in California, Connecticut, 
Maryland, New Mexico, Utah, Florida, Iowa, Washington State, 
and twice in Michigan, and served as intervenor in a Texas 
class action suit. I know of no similar action to correct the 
widespread programs plaguing some community-based programs.
    In other DD Act programs, some other DD Act programs also 
engage in anti-institutional programs, using their Federal 
dollars. This year the Utah Governors Council for People with 
Disabilities, a DD Act program, will spend over $203,000 for 
legislative advocacy. Washington State, New Mexico, and 
Arkansas councils offer similar examples of lobbying activity.
    Are Federal funds actually being used for these activities 
prohibited by the DD Act and other Federal laws? Whether or not 
the DD Act programs use public or private funds for their 
lobbying activity, the Federal grants certainly free up other 
funds to pursue deinstitutionalization interests.
    VOR receives absolutely no public money, State orFederal. I 
was provided the opportunity to testify before the Subcommittee on 
National Economic Growth in June of 1995 on a similar topic: lobbying 
by groups receiving Federal funds. I stated then, and I state now, 
there is a larger question that looms: just how much Federal money are 
these groups receiving, and how are they held accountable for the use 
of these funds? How does the Federal Government assure that the money 
it invests in groups is used as intended?
    It is an answer even the Secretary of the Department of 
Health and Human Services, Donna Shalala, has a difficult time 
answering. In response to a written inquiry regarding the 
amount of HHS appropriations spent on class action litigation 
against State-operated facilities, sent by Representatives 
Edwards and Wamp, Secretary Shalala responded, ``Program 
information on how individual cases are resolved indicates that 
very little money goes toward litigation.'' There's a great 
concern that the Secretary's records do not reflect the class 
action litigation activity in nine States which appears 
contrary to the directives of the DD Act. This is especially 
appalling when one considers the very facilities being sued are 
certified and funded through another HHS program, medicaid.
    The executive director of the National Association of 
Protection and Advocacy Systems wrote an angry letter to VOR 
stating, quote, ``Just because you and your colleagues do not 
like the results of our activities does not mean that funds 
have been misspent.'' What he is forgetting is that every 
taxpayer, including VOR's members, must have the opportunity. 
We understand that these groups objected to language that was 
submitted last year, and it was dropped. We wonder what there 
is to hide.
    I thank you, Mr. Chairman, for your willingness to take a 
closer look at this issue. It deserves your serious 
consideration. I thank you and members of the subcommittee for 
your attention.
    Mr. Porter. Ms. Spare, I'm sure that you're aware that at 
the heart of this issue is the underlying law----
    Ms. Spare. Yes.
    Mr. Porter [continuing]. Over which we don't have 
jurisdiction. On the other hand, we do have jurisdiction over 
the funding of the advocacy line items, and this is a point 
that I feel certain that Representative Istook is going to 
raise in our markup, if not before. My own experience is that I 
agree with most of what you've said, that there are some 
serious problems in this area that need to be addressed. We 
always hope our authorizing brethren and ``sistren'' will 
address them, but, as I said to the previous witness, often 
they don't, and that leaves it to us to attempt to do what we 
can about it. So I think the issue will be raised in our markup 
and we'll see what might happen among the subcommittee members.
    Ms. Spare. I appreciate that very much.
    Mr. Porter. Thank you for testifying.
    Ms. Spare. Thank you.
    Mr. Porter. Thank you.
    [The prepared statement of Poly Spare follows:]


[Pages 752 - 764--The official Committee record contains additional material here.]



                                        Thursday, January 29, 1998.

                                WITNESS

RUSSELL J. STRATTON, THE AMERICAN ASSOCIATION OF DENTAL SCHOOLS
    Mr. Porter. Russell J. Stratton, D.D.S., dean of the 
University of Oklahoma College of Dentistry, testifying in 
behalf of the American Association of Dental Schools. Dean 
Stratton.
    Dr. Stratton. Thank you, Mr. Chairman. I'm Russell 
Stratton, Doctor of Dental Surgery and dean of the University 
of Oklahoma College of Dentistry. On behalf of the American 
Association of Dental Schools, I'm pleased to have the 
opportunity to present our Fiscal Year 1999 funding 
recommendations for the health professions training and 
research programs, which are especially important to dental 
education.
    Mr. Chairman, at a time when many decry the shortage of 
primary care health professionals, and in a search for programs 
that will attract generalists, we're very proud of the general 
dentistry residency program which is a cost-effective primary 
care success story. General residency dentistry training 
provides graduates with primary care training and clinical 
experience to serve the broad community of patients. As you 
mentioned earlier, results are what count. In this particular 
case, 87 percent of those students who receive general 
dentistry training remain in primary care practice, and these 
dentists, who have had the benefits of this training, make 
fewer referrals to dental specialists, and that's especially 
important in rural and underservedurban communities, where 
logistically and financial barriers make specialized care unobtainable. 
So it is a success story.
    At my school, the Federal investment in this primary care 
training program means that many low-income children see a 
dentist for the very first time. The general dentistry 
residency programs provides a significant amount of free dental 
care through the Friendly Smiles Program, in which needy 
children are identified by the county and referred to our 
dental school clinic for treatment and preventive oral health 
services.
    Our residency program was created through this Federal 
start-up grant in the late 1980s, and it has been self-
sufficient ever since. In fact, it has enlarged at its own 
expense with no additional funding from the Federal Government.
    The AADS urges the subcommittee to fund this cost-effective 
and proven primary care program at $4 million in Fiscal Year 
1999. We would also urge the subcommittee's support for 
expanded funding for this program to accommodate pediatric 
dentistry, children's dentistry, training, if this change is 
adopted through the reauthorization process.
    Next, the Ryan White HIV/AIDS dental reimbursement program 
accomplishes two major Federal objectives in the fight against 
AIDS: first of all, support for essential oral health services 
for patients of limited means and, secondly, 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 true partnership between the Federal Government 
and dental education programs in which the Government partially 
offsets the cost of these programs incurred by serving by 
disproportionate share of indigent AIDS patients. However, 
because the award we receive from this program covers less than 
50 percent of the uncompensated costs we incur, our dental 
schools are very concerned about our ability to maintain this 
current level of service in our communities.
    Unreimbursed costs will continue to rise as the number of 
HIV patients increase and as the HIV/AIDS population lives 
longer. Very early on in the epidemic, dental care was directed 
toward eliminating infection and pain using procedures which 
had the least likelihood of exacerbating the patient's already 
fragile condition. But with the advent of multiple-drug 
therapies, many patients are living longer, and they require an 
increased scope of dental intervention. Patients now need 
periodontal procedures, or gum therapy; they need root canals 
and advanced restorative procedures such as crowns, bridges, 
and dentures. The AADS recommends a $1.2 million increase for 
the Ryan White HIV/AIDS dental reimbursement program, resulting 
in a total budget of $9 million in Fiscal Year 1999.
    We also strongly support the National Health Service Corps 
scholarship and loan forgiveness programs. In recent years, the 
Congress recognized the need to increase dental participation 
in the National Health Service Corps. There has been some 
progress in meeting the dental demand for loan repayment 
awards, but the agency still has not awarded any dental 
scholarships in the recent several years. We hope the 
subcommittee will renew its efforts to encourage the National 
Health Service Corps to expand its oral health initiative.
    The AADS also urges your continued strong support, for 
title VII health professions programs play a crucial role in 
our ability to recruit and retain minority and disadvantaged 
students in dentistry. We request the funding levels for these 
programs recommended by the Health Professions and Nursing 
Education Coalition, of which AADS is a member.
    Finally, Mr. Chairman, on behalf of the AADS and the 
University of Oklahoma, I want to express our gratitude for 
your leadership in the area of biomedical research. We endorse 
the testimony of the American Association for Dental Research 
regarding priorities in funding for the National Institutes of 
Dental Research in Fiscal Year 1999.
    Thank you for the opportunity to testify. I'd be pleased to 
answer any questions you might have.
    Mr. Porter. Dr. Stratton, thank you for your good 
testimony.
    One comment: Mr. Bonilla of our subcommittee has been one 
of the strongest advocates of the health professions. You need 
to talk to the people over on the other side of the rotunda 
about that, though. The Senate has not been nearly as strongly 
supportive as we have, and I think that if you can get a chance 
to talk with them, it will help.
    Dr. Stratton. We'll give it our best shot.
    Mr. Porter. Thank you, Dr. Stratton.
    Dr. Stratton. Thank you.
    [The prepared statement of Russell Stratton follows:]


[Pages 767 - 778--The official Committee record contains additional material here.]



                                        Thursday, January 29, 1998.

                                WITNESS

JEFF JACOBS, AIDS ACTION COUNCIL
    Mr. Porter. Jeff Jacobs, director of government affairs, 
representing the AIDS Action Council.
    Mr. Jacobs. Mr. Chairman, members of the subcommittee, I 
wanted to start by introducing my colleagues, Javiar Salizar 
and Julio Abru who've joined me here at the table.
    I'm Jeff Jacobs, director of government affairs for the 
AIDS Action Council, the national voice for over 2,400 
community-based AIDS service providers. The council does not 
receive any Federal funding. Our work is supported by our 
members and individual donations.
    This subcommittee is directly responsible for the dramatic 
advances in the care, treatment, and research of HIV disease. 
The advances of the past few years would not have been possible 
without the funding this committee has appropriated. It is 
clear that your investment in HIV and AIDS programs is 
beginning to return big dividends. AIDS deaths are dramatically 
declining. Powerful new drugs have restored health and hope to 
hundreds of thousands of people with the virus, and research is 
progressing on new drugs and vaccines to treat and prevent HIV 
disease. In fact, the research you invested in at NIH earlier 
in the decade is translating into the care and treatment 
provided by the Ryan White Care Act. Its emphasis on early 
treatment, comprehensive health services, and the provision of 
drugs is literally saving people's lives. Your continued 
investment in the Ryan White Care Act is urgently needed.
    Despite the existence of Federal AIDS programs such as the 
AIDS Drugs Assistance Program, Medicaid serves as the 
foundation of AIDS care through its provision of both 
comprehensive health care and drug therapies, however, most 
low-income individuals who are HIV positive are not eligible 
for Medicaid because they do not meet the programs disability 
standards or other categorical eligibility requirements. Low-
income people with HIV must get sick with AIDS before they 
qualify for Medicaid. Not being eligible for Medicaid 
contradicts the need that HIV positive individuals have for 
access to the new treatments and care. Early intervention for 
people with HIV is now accepted as a standard, recommended by 
NIH, and is cost effective.
    You may be wondering why I'm mentioning Medicaid, Mr. 
Chairman. This year, AIDS Action proposes that this committee 
allocate funds in the health care financing administration's 
budget to support a Medicaid demonstration project for States 
that choose to pursue an expansion of Medicaid eligibility to 
low-income HIV positive individuals.
    Despite all the progress, there is disturbing news that 
demonstrates the urgent need for new investments in prevention. 
According to a new study co-authored by Yale University, 87 
percent of young people do not believe they are vulnerable to 
getting the AIDS virus. The survey also found that over half 
the respondents could not name HIV risk factors. These 
startling statistics could be one reason why the CDC estimates 
that between 40,000 and 80,000 Americans will be infected with 
the HIV virus in 1998.
    Preventing HIV infection must be a national priority. 
People become infected with HIV either because they do not 
realize they are at risk or do not really know how to protect 
themselves from the virus. New targeted prevention efforts are 
urgently needed to prevent new infections. Increased funding 
for the CDC's HIV prevention efforts will enable States and 
localities to implement locally determined prevention plans 
developed by health departments and the community. The HIV 
prevention community planning process gives States and 
localities the flexibility they need to design targeted 
prevention strategies. It is far less expensive to prevent 
someone from becoming infected in the first place than to care 
for that person once they are infected.
    This raises the need for our Nation to get dirty needles 
off our streets. A 1997 NIH consensus panel concluded that 
needle exchange programs prevent the spread of HIV and do not 
increase illegal drug use. Secretary Shalala must retain her 
authority to federally fund these programs which have been 
endorsed by the American Medical Association and the American 
Public Health Association.
    Last but not least, we urge this committee to increase 
funding for the substance abuse treatment block grant. Much of 
the disproportionate increase in HIV infection rates among 
women, communities of color, and adolescents can be attributed 
to substance abuse. Increased funding for substance abuse 
treatment is desperately needed to help slow the spread of the 
virus.
    In conclusion, we urge this committee to continue to 
provide leadership by increasing funding for these programs 
that save lives. Thank you for this opportunity to testify.
    Mr. Porter. Mr. Jacobs, the subcommittee has certainly put 
Ryan White, the public education portion of the effort to 
prevent AIDS and others at a very high priority. I'm sure we 
will continue to do that. At the moment, as you know, on the 
needle exchange issue, there was an attempt to address that 
that really left the issue in the hands of the authorizing 
committee, and I think they have six months in which to act. I 
met with Dr. Bealenson who's running a very fine program in 
Baltimore that impressed me a great deal, and we hope that we 
can that issue resolved sometime soon and reasonably. I think 
you're exactly correct; that's a very important aspect of this 
that we need to pay great attention to. Thank you for 
testifying today.
    Mr. Jacobs. Thank you, Mr. Porter.
    Mr. Porter. We appreciate it very much.
    [The prepared statement of Jeff Jacobs follows:]
    [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.]


[Pages 781 - 786--The official Committee record contains additional material here.]



                                        Thursday, January 29, 1998.

                                WITNESS

DR. GARABED EKNOYAN, NATIONAL KIDNEY FOUNDATION
    Mr. Porter. Garabed Eknoyan, M.D., president, National 
Kidney Foundation, Professor of Medicine at the Baylor College 
of Medicine in Houston, Texas, testifying in behalf of the 
National Kidney Foundation. Dr. Eknoyan.
    Dr. Eknoyan. Chairman Porter, thank you. I'm Garabed 
Eknoyan, president of the National Kidney Foundation, otherwise 
known as the NKF, the Nation's largest voluntary health 
organization devoted to the care of patients with kidney 
disease as well as the prevention and cure of diseases of the 
kidney and urinary tract.
    I'm here today representing more than 30,000 lay and 
professional volunteer constituency of the foundation. The NKF 
is a member of the Council of American Kidney Societies, and we 
support the testimony that has or will be presented by the 
other members of the council: the American Society of 
Nephrology, the American Society of Pediatric Nephrology, the 
American Society of Transplant Physicians, and the Renal 
Physicians' Association.
    The National Kidney Foundation is most appreciative of the 
support that the committee has provided to the National 
Institute's of Health, NIH, during the last few years. We know 
that the members of the committee have been faced with 
difficult funding decisions for many worthy programs, and we 
thank you for making the NIH a priority. We are particularly 
appreciative of the 7.5 percent increase that the committee 
provided to the National Institute of Diabetes and Digestive 
and Kidney Diseases, NIDDK, for the Fiscal Year 1998.
    Resolutions have been introduced in the House and Senate in 
support of doubling the funding of NIH over five years. We are 
encouraged by this broad and growing support throughout 
Congress. We urge the appropriate committees including the 
House and Senate Budget Committees to support this effort 
through the identification of additional resources beginning in 
Federal year 1999. This additional funding is essential to 
maintain our country's lead in the scientific investigation at 
a time when traditional sources of funding from the mental 
investigation and clinical research are diminishing and 
threaten to disappear--and I am sorry if I took this out of 
your sermon, Mr. Chairman.
    For Federal year 1999, we would like to request a 15 
percent increase in the appropriation for NIDDK. This 
commitment of additional resources is needed to continue the 
support of new opportunities for improving the health of 
Americans which by medical research has provided and continues 
to offer today. To that end, we would like to recommend some 
new opportunities in research and challenges in the area of 
kidney disease and to solicit your support for them.
    Today, I would like to discuss two of the more important of 
these issues. Others are listed in the statement that was 
submitted. The first is proteinuria which is protein in the 
urine. There are 300,000 Americans with a irreversible kidney 
failure or end-stage renal disease, commonly termed ESRD, who 
require dialysis or a transplant to survive. We estimate that 
there are ten times as many individuals who have detectable 
protein in the urine which is an early indication of 
progressive kidney disease well before the presence of any 
other clinical or laboratory evidence of the problem. These 
Americans should become the focus of new attention for 
intervention and prevention. If these individuals with early 
kidney disease manifested by protein in the urine who are more 
likely to progress to ESRD are not attended to their cause will 
be downhill. More importantly, there is a much larger number of 
individuals who have protein in the urine, whose kidney disease 
will not progress to ESRD, but who are still at greater risk of 
heart attack and stroke than Americans without evidence of 
protein in the urine. How many? No one knows for sure right 
now, because not enough work has been done in this important 
public health area. We estimate the numbers to be in the 
millions, somewhere between 10 and 30, and it's hard to 
estimate it exactly. Nevertheless, very few of these 
individuals are identified or receive the care and attention 
that could prevent their morbidity and premature mortality. We 
need to know more about the incidence and prevalence of 
proteinuria as well as the efficacy of the interventions which 
could address this public health problem.
    The National Kidney Foundation is strongly committed to 
that goal. We recommend that the kidney division of the NIDDK 
be encouraged and provided support to gather basic 
epidemiologic information on this high risk segment of the 
population and to accept explore the appropriate strategies for 
the early identification and treatment of those at risk.
    The second issue I'd like to cover briefly is that of 
nutrition. Other than age, nutritional status is the most 
potent predictor of mortality in patients who are on dialysis. 
Unfortunately, malnutrition is a common complication of chronic 
dialysis patients and occurs in 40 percent of these 
individuals. These poorly nourished patients are more 
susceptible to infection and are more likely to be hospitalized 
than other patients. We recommend that the NIDDK sponsor a 
demonstration project in conjunction with the health care 
financing administration which would document the efficacy of 
the various interventions that are currently available in 
improving the nutritional status of end-stage renal diseased 
patients.
    Mr. Chairman, I hope that this testimony has emphasized the 
importance of research and its potential for preventing kidney 
disease and improving the lives of kidney patients. I'd be 
pleased to answer any questions you may have or to provide any 
additional information the committee may wish.Thank you again 
for this opportunity to address the committee.
    Mr. Porter. Dr. Eknoyan, you have helped to educate us as 
so many of us our witnesses do. I sit here and, I think, gain a 
great deal more than any of you do, because you give me 
insights into what is happening in your various fields of 
medicine, and we have so many people of prominence like 
yourself who come before the committee that it's a real 
education for me. We hope to translate that knowledge into 
actions that help people in their lives, and we very much 
appreciate your coming to testify. My wife suffers from 
diabetes; obviously, I'm focused on the risks that are inherent 
in that disease, and one of which is severe kidney problems, 
and so I'm very appreciative of the opportunity to hear you and 
to know what your concerns are. We will do our best to meet 
them, and thank you for coming to testify.
    Dr. Eknoyan. Thank you very much.
    [The prepared statement of Garabed Eknoyan, M.D., follows:]


[Pages 790 - 797--The official Committee record contains additional material here.]



                                        Thursday, January 29, 1998.

                                WITNESS

MARY KAYE RICHTER, NATIONAL FOUNDATION FOR ECTODERMAL DYSPLASIA
    Mr. Porter. Mary Kaye Richter, executive director of the 
National Foundation for Ectodermal Dysplasia, representing the 
foundation.
    Ms. Richter. Thank you, I'm always delighted when someone 
can say that name correctly.
    Mr. Porter. You see how I'm getting educated here?
    Ms. Richter. Yes, and, obviously, our previous visits have 
done exactly that.
    In the past, I've talked a great deal about the ectodermal 
dysplasia--as you may recall, these are individuals who don't 
have a lot of hair, teeth, sweat glands, and nails--but today, 
I want to be a little more general in my comments as I see some 
programmatic concerns regarding rare conditions in and of 
themselves.
    Through this hearing, you will listen to many individuals 
who espouse the doubling of the budget for the National 
Institutes of Health within the next five years and to begin 
that process with a 15 percent increase for year 1999, 
something with which we certainly agree. While some people 
would encourage you to earmark dollars for specifics of these 
entities, I would urge you to leave such decisions with the 
leadership of the NIH. It would indeed be unfortunate if 
research funding was prioritized by the effectiveness of 
lobbying rather than the effectiveness of science.
    Once the diagnosis of a rare condition has been made, 
families encounter incredible challenges as they search for 
useful treatment information and knowledgeable care providers. 
Only the savvyest will make their way to organizations like 
ours. What happens to those families for whom no advocacy 
organizations exist? What happens when there are no available 
clinicians to make a diagnosis? What happens then when the 
effects of a condition exacerbate as a result? What happens 
when there's no place to turn, and you have no hope? How does 
it feel to bury a child?
    In 1988, the National Commission on Orphan Diseases 
conducted a survey that indicated that 46 percent of the 
families affected by rare conditions endure from one to five 
years of searching before arriving at a diagnosis.
    There is an office that is in a position to make a 
difference for families in such dilemmas, the Office of Rare 
Diseases within the NIH. Currently, there are more than 100 
special research centers as identified by individual NIH 
institutes across the United States. I am asking you to enable 
the Office of Rare Diseases to select a minimum of 15 of these 
as diagnostic research centers for rare disorders that would 
focus on diagnosis and treatment.
    A key function of the office of the rare diseases is the 
sponsorship of scientific workshops. One workshop focused on 
the ectodermal dysplasias. It was a landmark event as the 
National Institute of Dental Research, The National Institute 
of Arthritis, Muscle, Skeletal, and Skin Diseases, and the 
National Institute for Child Health and Development along with 
the Office of Rare Diseases joined together as co-sponsors. The 
symposium was a revelation to the SNBs as the overlap of key 
biological issues became apparent. It is clear that improved 
understanding of the developmental biology associated with ED 
with help unlock the doors of knowledge to human development.
    Currently, the Office of Rare Disease sponsors, or co-
sponsors, approximately 30 workshops per year. With thousands 
and thousands of rare conditions, the number of workshops must 
be increased. Increasing the budget of the ORD by just $500,000 
for workshops would significantly increase the number of rare 
disorders that are examined each year.
    The Office of Rare Diseases could also serve as a much 
needed focal point to identify who is doing work in a 
particular rare disease entity. Currently, families can only 
guess where they might go for help. It would be much better to 
have a resource at hand that could elucidate critically needed 
care and research information. Currently, the ORD has a budget 
of $1.6 million. I implore you to make this office what it 
needs to be by increasing this budget to at least $4.8 million.
    Both scientific and clinical research is needed to improve 
our understanding of and treatment for raredisorders. It is 
important to remember that although a condition being investigated may 
be rare, successful research may have tremendous impact on a much 
larger number of individuals. For example, the NIDR sponsored a program 
that placed dental implants into the jaws of 50 individuals affected by 
ED. Not only did the project underscore the value of implants in a 
dentureless adult, it also supported the procedure for use in children.
    It is important to note that the research at the National 
Institute for Dental Research has had an additional benefit. 
The NFED, thanks to cooperation from several outstanding dental 
schools, their staffs, and Implant Innovations, Inc., and 
NovoBiocare, a manufacturer of implant components, offers 
special implant programs to the dental schools association with 
Southern Illinois University, the University of North Carolina, 
and the University of Washington. The private sector has now 
picked up that which was begun in the public sector.
    Although the bulk of my testimony is devoted to funding for 
the NIH the value of the general dentistry residency program is 
worthy of comment. The program not only improves the depth of 
training for dentists but also enables individuals needing 
specialized care to identify practitioners and programs where 
help may be available. Diet, speech, self-esteem, business 
success and employment are all impacted by the condition of the 
mouth. We support the position of the American Association of 
Dental Schools for funding of at least $4 million with a caveat 
that additional funds be added should the reauthorization bill 
include pediatric dentist training as I hope it will.
    One last concern that I would like to share with you is 
inadequate funding to get investigators to begin their research 
as follows: during their fellowship projects may begin for 
which financial support is lost at the end of the fellowship. 
There needs to be a system whereby fellowships involving rare 
disorders can be expanded with adequate financial support when 
warranted. My list could go on and on.
    Mr. Chairman, I know that you are well aware of the anguish 
of parents whose children are affected by rare conditions. My 
hope is that you will spearhead an effort to increase the role 
and budget of Office of Rare Diseases, and like everyone else 
who has been here, we applaud and thank you for all of your 
efforts on behalf of biomedical research.
    Mr. Porter. Ms. Richter, thank you. We rarely hear someone 
say leave these decisions to science, because obviously one 
wants to advocate that their concerns are more important than 
any other, but I would like to reinforce what you've said. All 
of us have strong opinions that we want factored into this 
process, and we express them through the report; we express 
them to the institute directors that come before us to testify; 
to Dr. Varmus directly, but in the end, we know that their 
judgment, the judgment of science, is a better judgment than 
the judgment of politics. We also realize there's politics in 
science, but I think anyone who has ever dealt with NIH always 
comes away as we do with a feeling that they listened; that 
they're fair; that they try to respond to people's concerns 
just as much as we do, and I think your message that, in the 
end, that's the process that we have to trust, and we have to 
simply give them the resources they need to do these things, 
and they will follow the best opportunities and the greatest 
needs and will listen to all of us. They'll listen to you, and 
they'll listen to us too, but we can never tell them, ``We 
direct you to do this,'' because then we're stepping on a 
jurisdiction that really isn't ours. We have the authority but 
not the jurisdiction.
    Ms. Richter. I appreciate your understanding of that. I 
think it's something that I've come to only after years of 
being involved with the institutes both as a member a research 
advisory council and as a lay advocate. I appreciate your 
thoughts.
    Mr. Porter. Thank you for your testimony.
    [The prepared statement of Mary Kaye Richter follows:]
    [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.]


[Pages 801 - 810--The official Committee record contains additional material here.]



                                        Thursday, January 29, 1998.

                                WITNESS

ELLEN GLESBY COHEN, LYMPHOMA RESEARCH FOUNDATION OF AMERICA
    Mr. Porter. Ellen Glesby Cohen, president and founder of 
the Lymphoma Research Foundation of America, testifying in 
behalf of the foundation.
    Ms. Cohen. Good afternoon, Chairman Porter. My name is 
Ellen Cohen. I'm honored to be here today as founder and 
president of the Lymphoma Research Foundation of America, the 
Nation's largest organization dedicated to providing 
comprehensive information and support to lymphoma patients, 
their family and friends.
    The Lymphoma Research Foundation of America also finances 
research into better and safer treatments for the third most 
rapidly rising cancer in the U.S. Although this disease claims 
more victims everyday and although understanding lymphoma could 
shed light on many other diseases, funding for lymphoma 
research amounts to just 2 percent of the National Cancer 
Institute's budget. We are looking to this subcommittee for the 
hope and strength we need to persevere in our battle against 
this killer called lymphoma.
    I'd like to share with you the story of my own battle with 
lymphoma as a way of illustrating just how crucial your work 
is. In 1987, my husband, Mitch, and I were the proud parents of 
an 18-month-old daughter, and we were waiting for our second 
child to be born. My husband's internal medicine practice was 
growing, and I was a busy T.V. commercial producer. Life was 
good except for the nagging tiredness I constantly feel. It 
also seemed that I got the flu or a cold every time I turned 
around. The lymph nodes in my neck kept swelling up, and my 
feet were very swollen. I went to the doctor but blood tests 
did not reveal anything suspicious.
    My son, Josh, was born in October of 1988, and when I 
didn't bounce back from the birth and lumps kept growing on my 
neck, my husband sent me to an oncologist. She took one look at 
me and sent me straight to the hospital for a biopsy. A week 
later, we had an answer, but it wasn't the answer we wanted to 
hear. I had lymphoma, cancer of the lymph system, and it's 
incurable.
    At the time, I wasn't even 40 years old. My doctor said to 
go on with my life. I was sick they said, but not sick enough 
to receive aggressive treatment at the time. But how do you act 
like nothing is happening to your family when cancer is lurking 
in your body?
    Somehow, we made it through a year and a half. Eventually, 
I developed a 99 percent obstruction in my nasal pharynx, and I 
could hardly breathe. It came time for me to experience high-
dose chemotherapy, and within days of that first treatment I 
was back in the hospital with a collapsed immune system. I had 
just five white blood cells left in my body. I didn't even have 
the strength to hug my children.
    Eventually, the therapy did its job, but it wasn't medicine 
that gave me the will to fight, it was thestatistics behind 
this devastating illness. Lymphoid malignancies strike upwards of 
85,000 Americans each year, and there is a 50 percent mortality rate. 
It is one of the most rapidly rising cancers in America today. Yet it 
seems that no one knows much about it. Even the scientific community is 
not sure what causes it, and at the time of my diagnosis there was no 
national organization funding research, educating the public, or 
supporting patients.
    I had to do something, so I picked up the telephone and 
began calling everyone I knew. Each phone call led me to 
someone else: another doctor, another patient. Those 
conversations convinced me that I could start a non-profit 
organization that could make a difference, not just for myself 
but for the health of all Americans.
    You see this disease knows no boundaries. Anyone can get 
it: a former first lady, a former senator, a professional 
hockey player, two of my neighbors. Approximately 600,000 
Americans today are living with lymphoid malignancies. Some 
days it feels like I hear from all of them at once. I have to 
fight back the tears when I hear from a 23-year old graduate 
student from Illinois who tells me that she's relapsing after 
only a year of remission, and she's running out of safe and 
effective treatment options.
    I started the foundation to raise money, but what is 
priceless is the hope we have raised. We started the first 
lymphoma-specific support groups, internet site, patient help 
line, and quarterly newsletter. To date, the Lymphoma Research 
Foundation of America has funded 43 lymphoma research projects 
totaling more than $1.25 million at top cancer centers and 
universities across the country, however, lymphoma is a 
growing, serious public health problem.
    Recent research shows that there are links between 
understanding the causes of lymphoma and understanding the 
causes of many other cancers including leukemia, lung, breast, 
and prostate. We are finding that there are several crucial 
scientific issues that require immediate attention such as the 
links between viruses and bacteria with lymphoma and the role 
of environmental toxins in triggering lymphoma.
    The Lymphoma Research Foundation of America has achieved a 
lot, but this disease is formidable. It is a formidable 
opponent, and it strikes us in the very prime of our lives. Of 
all cancers, lymphoma is the fourth largest killer of men ages 
25 to 60 and the fifth largest killer of women in the same age 
group. Sixty percent of all childhood malignancies are lymphoma 
related diseases.
    The good news is that scientists believe that lymphoma 
research will unlock the secrets to many other cancers. That is 
why for Fiscal Year 1999, Mr. Chairman, we seek the 
subcommittee's continued support in funding the research 
essential to finding better treatments and a cure for lymphoma. 
In furtherance of this goal, we request that Congress increase 
appropriations for the National Institutes of Health, and, as a 
first step, the Lymphoma Research Foundation of America joins 
the ad hoc group along with the other research organizations in 
supporting a 15 percent increase for the NIH Fiscal Year 1999. 
Further, we support doubling of the NIH budget in five years.
    For the National Cancer Institute, the foundation supports 
the institute Fiscal Year 1999 bypass budget request of $3.191 
billion. The foundation requests that this subcommittee include 
in its Fiscal Year 1999 committee report language specifically 
calling for increased appropriations for lymphoma research; use 
of all available mechanisms for expanding the scope of research 
including convening a scientific workshop to examine the 
current state of lymphoma research and exploring opportunities 
for additional study; use of program announcements and requests 
for applications on lymphoma-specific research topics, and 
research into potential environmental and other factors 
responsible for lymphoma.
    Thank you very much for the opportunity to tell my story, 
and than you for your hard work and your consideration.
    Mr. Porter. Ms. Cohen, I've lost, just this past year, one 
of my close friends--a man I went to college with years ago--to 
lymphoma, so I realize, I think, a little bit about what you're 
telling us, and we will, as I said before, we're going to do 
our best to meet that goal. If we don't get the resources to do 
it this year, we're going to fight to get them next year, but 
we're going to stay with it.
    Ms. Cohen. And we'll do all we can too.
    Mr. Porter. Absolutely. Thank you.
    Ms. Cohen. Thank you.
    [The prepared statement of Ellen Glesby Cohen follows:]


[Pages 814 - 821--The official Committee record contains additional material here.]



    Mr. Porter. Now, let me say that we have reached four 
o'clock which is the time we intend to finish. We are just a 
little more than half way through our witness list. There are 
nine witnesses left. I have appointments waiting back in the 
office as well. I apologize to all of our witnesses for being 
this far behind. Unfortunately, we had a very long morning that 
lasted until one o'clock, and I had appointments between one 
and two that got us even further behind. We're going to take a 
short break at this point, and then come back, and we're going 
to try to be--I'll try to be as efficient as I can in listening 
to each of the remaining nine witnesses and not delay you any 
longer than we already have.
    The subcommittee will stand in recess for five minutes.
    [Recess.]
                              ----------                              

                                        Thursday, January 29, 1998.

                                WITNESS

RITA CARTY, TRI-COUNCIL FOR NURSING
    Mr. Porter. Rita Carty, DNSc, RN, dean of the College of 
Nursing and Health Science at George Mason University in 
Fairfax, Virginia, testifying in behalf of the Tri-Council for 
Nursing. Ms. Cary, welcome.
    Ms. Carty. Thank you, Chairman Porter and members of the 
subcommittee; good afternoon. I am Rita Carty, dean of the 
College of Nursing and Health Science at George Mason 
University in Fairfax, Virginia. This testimony is abbreviated 
from my full statement, and I request the full statement be 
printed in the record.
    I present the Fiscal Year 1999 funding recommendations for 
nursing education and research of the Tri-Council for Nursing. 
The Tri-Council is composed of four major nursing 
organizations: the American Association of Colleges and 
Nursing, the American Nurses Association, the American 
Organization of Nurse Executives, and the National League for 
Nursing.
    First, I want to thank you, Mr. Chairman, and the members 
of this subcommittee for the Fiscal Year 1998 funding levels 
for the programs critical to nursing education and research: 
The Nurse Education Act, scholarships for disadvantaged 
students, the National Institute of Nursing Research at NIH, 
the Agency for Health Care Policy and Research, the National 
Health Service Core Scholarship and Loan Program, and others. 
We can assure you that these needed funds will be spent to 
improve the public health.
    Last year, the President's Fiscal Year 1998 budget made 
adequate funding of these vital programs a real challenge for 
us all. We hope that the numbers will be much better in the 
administration's Fiscal Year 1999 proposal.
    For Fiscal Year 1999, for the NEA, the Tri-Council 
respectively requests an increase of 8 percent over Fiscal Year 
1998 to a level of $70.92 million. For SDS, we seek an increase 
also of 8 percent to $20.235 million. For NINR, we recommend a 
15 percent increase to $73.136 million. For ACPAR, we ask an 
increase of 6 percent of $155.221 million. For the National 
Health Service Core Scholarship and Loan Repayment Program, we 
seek an increase over Fiscal Year 1998 of 5 percent to $82.074 
million. Please let me explain our reasons.
    In terms of the Nurse Education Act, NEA is a key source of 
Federal financial support for nursing education programs and 
nursing students. The NEA primarily seeks to encourage 
preparation of advanced practice nurses for underserved 
populations. The fact is that the NEA is the sole source of 
Federal support for advanced practice nursing education. The 
APNs include nurse practitioners, certified nurse midwives, 
clinical nurse specialists, and certified registered nurse 
anesthetists. These well-trained professionals are highly 
sought after by hospitals, community-based health care centers, 
and other providers. The NEA funds programs to educate APNs and 
future nursing faculty; offers modest stipends to masters and 
doctoral students, and seeks to help disadvantaged students 
obtain nursing education.
    The NEA encourages linking training to the delivery of 
primary care to underserved populations, assisting continual 
education in rural areas and encourages schools to increase 
enrollment. It offers repayments of academic loans for nurses 
that agree to practice of nurse shortage such as public 
hospitals, community health centers, American Indian 
facilities, and public health service facilities.
    The NEA fosters programs to prepare nurses to meet the 
health care system's need for nursing professional to address 
sicker patients in tertiary care sites; people living longer 
with chronic conditions, and often complex health care needs of 
an increasingly elderly population. NEA programs have 
incentives for schools to train for work with underserved 
populations. NEA funds serve as Federal leverage to reward 
schools and students for meeting work force needs of our 
rapidly evolving health care system. Whatever that system 
ultimately becomes, nursing professionals will continue to 
provide needed health care services.
    More specifically, NEA assisted the development and 
expansion of 60 percent of current educational 
programspreparing nurse practitioners for primary care. Ninety-five 
percent of NP graduates work in primary care, and 44 percent of NPs 
have at least 25 percent Medicaid patients in their caseloads. NEA 
supported about half of the doctorly-prepared nursing faculty teaching 
today, and I'm a product of funding of NEA.
    NEA provided stipends in 1997 to almost 37 percent, or over 
12,000 full-time graduate nursing students and 267 grants 
totaling $15.6 million. The NEA significantly increased the 
number and retention of minority nursing students and faculty 
boosting the number of minority nursing graduates by 25 percent 
over the past 5 years. NEA funds facilitated development and or 
operation of 50 percent of currently operating nurse-managed 
health care centers that serve diverse populations of 
minorities, elderly, schools, housing complexes, and homeless 
people. It supported 80 percent of certified nurse mid-wifery 
programs and 89 percent of certified midwives serve low-income 
women. It helped train certified registered nurse anesthetists, 
and these are the people who are the sole providers of 
anesthesia services in 70 percent of our rural hospitals.
    With an eye to the future, NEA sponsored and collaborated 
on research on nursing work force to help maintain a relevant 
educational focus and production level. An NEA project at ACT, 
the Loyola University of Chicago's School of Nursing, prepares 
primary health care nurse practitioners in women's health to 
work with women in high-risk populations on mental health, 
chronic diseases, violence, early detection of cancer, access 
to care, and other issues.
    Another NEA grant seeks to increase the number of 
disadvantaged and minority nursing graduates at Prairie View 
A&M University in Texas. Several NEA programs use special 
mentoring and academic assistance to help nursing students 
complete their courses of study and then return to underserved 
areas to practice nursing.
    At the Marquette University College of Nursing in 
Wisconsin, NEA funds support a pediatric nurse practitioner 
clinical specialist program that will graduate APNs capable of 
providing high quality, cost-effective primary and preventive 
care to children living in poverty.
    The NEA supports a new family nurse practitioner program at 
the University of Arkansas College of Nursing and has generated 
38 graduates, half of whom practice in medically underserved 
areas.
    Mr. Porter. Ms. Carty, I know you have several pages left 
there. We're not going to be able to hear it. Can you reach 
your conclusion?
    Ms. Carty. Yes, sir. In conclusion, the Tri-Council wants 
to thank the subcommittee for its support of nursing education 
and research in the past, and we hope that you will continue to 
support nursing education and research in the future, and I 
would answer any questions.
    Mr. Porter. We will, we definitely will. Thank you for your 
testimony.
    Ms. Carty. Thank you.
    [The prepared statement of Rita Carty follows:]


[Pages 825 - 831--The official Committee record contains additional material here.]



                                        Thursday, January 29, 1998.

                                WITNESS

DR. JOHN H. LYNCH, AMERICAN UROLOGICAL ASSOCIATION
    Mr. Porter. John H. Lynch, M.D., staff director of the 
Division of Urology at Georgetown University Medical Center in 
Washington, D.C., representing the American Urological 
Association. Dr. Lynch.
    Mr. Lynch. Mr. Chairman, I'm Dr. John Lynch, chief of the 
Division of Urology at Georgetown University Medical Center. I 
had previously had the privilege of testifying before this 
subcommittee several years ago on behalf of prostate cancer 
research funding. That was immediately after the death of 
someone who was a patient of mine; who I became friendly with 
over the years that I took care of him, and who was well known 
to this subcommittee, Phil V. O'Contee.
    I am pleased today to have the opportunity to present the 
recommendations of the American Urological Association for 
Fiscal Year 1999 funding for urology research at the National 
Institute of Diabetes and Digestive and Kidney Diseases and the 
National Cancer Institute. I will summarize my written 
statement that has been submitted for the record.
    On behalf of the AUA, I want to thank the Congress, this 
subcommittee, and especially you, Mr. Chairman, for your strong 
support of NIH and the CDC and for your continuing interest in 
neurologic science. The increase in Fiscal Year 1998 funding 
for these key health agencies is very welcome and is deeply 
appreciated by the entire research community. The recognition 
by Congress that the activities of the agencies must remain 
critical priorities for the Federal Government is important for 
all of our citizens.
    This morning, representatives of the AUA attended a White 
House briefing with other cancer research advocates, and heard 
Vice President Gore announce plans for a major increase in 
spending for cancer research at the NIH. We welcome this 
commitment and urge Congress to work with the administration to 
support and enhance these initiatives. The AUA will work 
closely with this subcommittee and the administration to 
achieve this goal. We will take this message to the 
congressional budget committees and the leadership of the 
Appropriations Committee to make sure that the dollars will 
actually be to your subcommittee to fund new cancer research.
    It is our hope that the impact of urologic cancer will 
finally be fully recognized and a generous share of these funds 
will be quickly available to catapult of our understanding of 
prostate, bladder, and kidney cancers. These cancers are a 
significant public health problem as 50 percent of cancers in 
men are urologic in origin. The research needs and 
opportunities are great in this area, and funding levels have 
not kept pace. A significant infusion of funds will greatly 
accelerate work in this area, because we would be able to 
capture the developments in other basic science fields and 
apply them to the particular questions of urologic cancers.
    I would like to report on the state of funding for basic 
urologic science at NIDDK. Despite the generous increase 
provided to NIDDK this fiscal year, the institute has chosen to 
restrict urology to 3 percent growth. Because of previous 
funding decisions at NIDDK, the urology program has actually 
lost ground. The AUA is very concerned by this situation. We 
have recently been assured that future increases will at least 
parallel the growth in the institute's budget. This is 
encouraging, but we ask this subcommittee's help to make sure 
that the commitment can become reality.
    This subcommittee had called on NIDDK to begin work on a 
women's urological program, recognizing the important impact 
these diseases have on women's health and the paucity of 
research activity in this area. The recent conference explored 
the many clinical and scientific issues, and we trust that 
NIDDK will use this experience to build a strong initiative in 
the next year. The AUA hopes very much that the subcommittee 
will review this situation carefully with the NIH when the 
agency's leadership presents testimony.
    We believe that many of the problems with urology research 
are due to the lack of focus for urology at NIH. Until 
recently, grant applications in urology were being sent to as 
many as nine institutes with possible review by any of over 20 
study sections, none of which had any expertise in urology. 
This subcommittee has addressed this issue in the past, and I 
would like to bring you up to date on some of the recent 
developments.
    NIH has created a urology special emphasis panel to review 
grant applications. The AUA is encouraged by the early progress 
of this panel. However, we continue to recommend the 
concentration of urology research into fewer institutes as well 
as the reduction in the number of study sections reviewing 
urology applications. These remaining study sections should be 
expanded to include additional urologic scientists to ensure 
that the necessary expertise is there to have adequate peer-
review of the application.
    Recently, NIH assured us that this reconfiguration can be 
achieved. We believe that the changes can be made within the 
year, and we will look to you for counsel as we proceed in our 
discussions with NIH.
    Mr. Chairman, that completes my testimony. I would be glad 
to answer any questions.
    Mr. Porter. Dr. Lynch, thank you very much. We do share 
your concern, and we will work with you on that. Thank you very 
much.
    Dr. Lynch. Thank you very much.
    Mr. Porter. Thank you very much for testifying.
    [The prepared statement of John Lynch, M.D., follows:]


[Pages 834 - 844--The official Committee record contains additional material here.]



                                        Thursday, January 29, 1997.

                                WITNESS

RONNIE B. LANCASTER, ASSOCIATION OF MINORITY HEALTH PROFESSIONS SCHOOLS
    Mr. Porter. Ronnie B. Lancaster, MD, JD, President of the 
Association of Minority Health Professions Schools, testifying 
on behalf of the association. Mr. Lancaster?
    Mr. Lancaster. Thank you, Mr. Chairman, and good afternoon.
    I am Ronnie B. Lancaster, Senior Vice President for Health 
and Social Policy at the Morehouse School of Medicine, but 
today appear as President of the Association of the Minority 
Health Professions Schools.
    Mr. Chairman, these schools are responsible for having 
trained fully over 50 percent of the Nation's black physicians 
and dentists and 75 percent of the Nation's black 
veterinarians.
    Mr. Chairman, I would like to make three points in summary 
of my testimony. However, before beginning, I would like to 
first thank you for your leadership and thank this subcommittee 
for their record of support of those programs which have 
allowed our institutions to train these individuals who serve 
in underserved communities.
    I'd also like to say at this time, Mr. Chairman, that I 
consider it a point of particular privilege to thank this 
subcommittee for the work of Congressman Louis Stokes. 
Congressman Stokes has not only well represented the citizens 
of Cleveland, the residents of Ohio, citizens of this Nation, 
but is clearly a hero in representing the interests of poor and 
minority citizens in this country and helping to ensure 
adequate access to healthcare services.
    Now, Mr. Chairman, three brief points. First, I would like 
to express our appreciation for your support and the support of 
the subcommittee for the Title 3 Program, Title 3 of the Higher 
Education Act administered by United States Department of 
Education. As you know, Mr. Chairman, this is a program that 
provides very important support to enable our institutions to 
strengthen development offices, libraries, and important 
infrastructure such as information-technology programs. This is 
an important program, Mr. Chairman, and, without exaggeration, 
represents the difference between keeping our doors open in our 
institutions.
    Second, as the subcommittee knows, managed care has 
transformed and continues to rapidly transform the healthcare 
landscape. It has caused many changes around the country and 
has important implications for all medical schools and their 
faculty-practice programs, and it is no exception for the 
faculty-practice programs at the institutions that I represent. 
As a result of the support of several programs at Health and 
Human Services, our institutions are in the process of 
assessing the opportunities and the challenges that our plans 
face in this new managed care environment. Mr. Chairman, you 
should know that the average medical schoolin this country 
receives fully somewhere between 30 and 60 percent of its operating 
revenues from their faculty-practice plans. Unfortunately, the faculty-
practice plans at our institutions contribute between 0 to 5 percent. 
And so clearly there is much work to do, and we ask the subcommittee's 
support for additional funding of $1.5 million for the Office of 
Minority Health to assist us in continuing and completing this 
analysis.
    Finally, Mr. Chairman, we are all proud of the caliber of 
research being carried out under the direction of the National 
Institutes of Health. Our institutions are strong supporters of 
additional funding for NIH. However, as you may know, 
participation among African-American researchers and also 
Hispanic researchers is quite modest. In 1993, the Chronicle of 
Higher Education reported that African-American researchers 
received less than four-tenths of 1 percent of funding from NIH 
and Hispanic researchers received less than 1.6 percent 
research dollars rewarded competitively from NIH.
    As we contemplate substantial increases in the NIH budget, 
I believe that we have an unprecedented opportunity to help 
ensure the full participation of competent researchers from 
these communities which represent the most at risk and sickest 
among us. We recommend, Mr. Chairman, the establishment of a 
research endowment program to assist those institutions which 
have both a mission and a record of caring for poor and 
minority citizens, and now, where those institutions 
participate now only modestly in NIH funding, to assist them in 
building research programs to help ensure the fuller 
participation of researchers conducting scientific inquiry into 
those diseases which disportionately affect poor and minority 
citizens.
    Mr. Chairman, it has been a pleasure and an honor to appear 
before you today. I appreciate the opportunity.
    Mr. Porter. Ronnie, I probably ought to explain that Ronnie 
and I know each other very well. Ronnie is a very good friend 
of my son David. So I usually don't call the witnesses by their 
first names
    Ronnie, the words that you said about Louis Stokes were so 
absolutely true. And learning of his planned retirement has 
been a great blow to all of us. I don't know how we'll do 
without him. He's been on this subcommittee and an active and 
strong leader of this subcommittee for longer than I have been 
in Congress. I haven't had a chance to express that publicly 
and to Louis, but we're going to miss him a great deal. As you 
know, he, in the last year of his service in Congress, will 
continue to provide the kind of leadership and representation 
that will help us to address the issues that you have raised in 
your testimony.
    So, thank you for coming to testify. I'll pass along your 
good words about Louis to him. And it is really good to see 
you.
    Mr. Lancaster. Thank you, Mr. Chairman.
    [The prepared statement of Ronnie Lancaster follows:]


[Pages 847 - 853--The official Committee record contains additional material here.]



                                        Thursday, January 29, 1998.

                               WITNESSES

J.E. CHAVEZ PAISLEY
STEVEN C. MALLORY, NATIONAL COALITION FOR HEART AND STROKE RESEARCH
    Mr. Porter. J.E. Chavez Paisley, Volunteer Liaison, Stroke 
Connection, Incorporated, accompanied by Steven C. Mallory, 
Stroke Support Web Site Coordinator, testifying on behalf of 
the National Coalition for Heart and Stroke Research. Thank you 
both for being here.
    Ms. Paisley. Hello. I am J.E. Chavez Paisley of 
Pennsylvania. I represent the National Coalition of Heart and 
Stroke Research. Our coalition's 14 organizations represent 
over five million volunteers and members nationally.
    I'll read a message for you written by Marylander, Steven 
Mallory.
    ``I signed up to serve my country at 18, right into the 
infantry. I got married when I was 19; honorable discharge at 
22; started my college education part-time at night; worked 
full-time during the day. The two kids were born. We bought a 
house. I graduated in 1992. Things were going great.
    June 20, 1994, I was in France. A 36-year old FAA 
representative heading up a team of Martin Marietta aerospace 
engineers on the airbus thrust reverser. My whole life, 
including that of my family's immediately changed. I had a 
brain-stem stroke.
    The area that controls motor skills was severely damaged. 
Nine out of the twelve cranial nerves that control the body 
don't work anymore. Breathing, eye movement, bowel and bladder 
control, and paralysis from the nose down.
    Now, my life is completely different. I regained some 
movement. I must rely on my wheelchair 100 percent. My speech 
was gone. Today, I have a lift in my mouth and teflon inserts 
on my vocal cords to help me speak. Cognitively, I'm not 
damaged.
    My life is only what I and my family make of it. I cannot 
do what I used to do: comb my hair, brush my teeth, scratch an 
itch or blow my nose. They are done for me. I am completely 
dependent.
    Internet is my link to the outside world. I have made many 
stroke friends. The most frequently asked question is, ``Why? 
Why me?'' Will my children have to ask that question?
    Research can provide the answers for these questions. I 
came here to ask you to increase the funding for stroke 
research. Thank you.''
    Steven is one of the 4 million stroke survivors in our 
country, 4 million. There are almost 60 million Americans who 
have cardiovascular disease. Cardiovascular disease or stroke 
will hit one out of every five of your constituents. You who 
are day-in and day-out held responsible for our country's 
bottomline must know that our 1998 epidemic will cost our 
country $274 billion in medical expenses and lost productivity.
    At the age of 41, I was hit by a massive cerebral 
hemorrhage, four aneurysms and a stroke. My heart flatlined 
twice, but it was restarted by a defibrillator. I was partially 
paralyzed and totally blind. I crawled on all fours. Two brain 
surgeries later, two eye surgeries, and three quarters of a 
million dollars later, I realized that I was one of the lucky 
ones, the rare ones. My damage occurred in an area of the brain 
that allowed for ample recovery.
    Heart disease is our Nation's number one killer for both 
men and women. And stroke is our number three killer and our 
number one disabler. It is a silent epidemic. Survivors, like 
Steven, are not marching, not pacing outside your office, not 
waiting until you get off--take--not waiting for you to take 
him off hold while you finish your report. No, they have been 
silent. You may have the time to consider these testimonies, 
but the person whose brain is attacked 53 seconds from now 
won't.
    The coalition knows the difficult choices that you have had 
to make in the past few years to sustain this Nation's 
commitment to medical research and the NIH. We thank you, 
Chairman Porter, and the subcommittee for its strong support 
for medical research funding. The coalition supports a 15 
percent increase in funding for the NIH in the Fiscal Year 1999 
as the first step to doubling the NIH budget over the next five 
years. Sixty million Americans who suffer with cardiovascular 
disease and the National Coalition for Heart and Stroke 
Research is also asking you to provide a 15 percent increase in 
funding for heart and stroke research for NHLDI and NINDS. You 
will save our country money and hurt. After all, what good is a 
country without a heart or a brain.
    We thank you very much for your time.
    Mr. Porter. Ms. Paisley and Mr. Mallory, I say this often, 
but all of us who are members of this subcommittee don't 
consider these matters in a vacuum because all of our families 
have been touched. My mother died of congestive heart failure 
after a series of strokes. My father died of a massive heart 
attack at a relatively young age. They touch every family. All 
I can say is that we are going to do the very best that we 
possibly can to reach those goals, and nothing, I think, is of 
higher priority than doing so. So, we're going to do everything 
that we possibly can.
    Ms. Paisley. Chairman Porter, I think that probably one of 
the problems is that most people can see stroke and heart 
attack as just a senior's problem. And there are infants, there 
are people who are 36 years old who are getting it.
    Mr. Porter. Oh, absolutely.
    Ms. Paisley. Thank you so very much.
    Mr. Porter. Thank you.
    [The prepared statements of J.E. Chavez Paisley and Steven 
Mallory follows:]


[Pages 856 - 868--The official Committee record contains additional material here.]



                                        Thursday, January 29, 1998.

                                WITNESS

SHIRLEY COLETTI, NATIONAL COALITION OF STATE ALCOHOL AND DRUG TREATMENT 
    AND PREVENTION ASSOCIATIONS
    Mr. Porter. Our next witness is Shirley Coletti, DHL, 
President of Operation Par, Incorporated testifying on behalf 
of the National Coalition of State Alcohol and Drug Treatment, 
Prevent Associations and Legal Action Center.
    Ms. Coletti.
    Ms. Coletti. I thank the chairman.
    I am Shirley Coletti, and I'm very sorry that Mr. Young and 
Mr. Miller aren't here today because Mr. Young has literally 
saved our program time after time and has been one of the great 
supporters. And of course, we serve many of Congressman 
Miller's constituents.
    Mr. Porter. Ms. Coletti, Mr. Miller was here.
    Ms. Coletti. I know.
    Mr. Porter. I'm afraid I'm well over our time limit.
    Ms. Coletti. I realize that.
    Mr. Porter. Mr. Young, because he is the chairman of a 
major other subcommittee, he doesn't usually attend our 
hearings. He is just too busy.
    Ms. Coletti. I realize that. We've been in touch with his 
office.
    Mr. Porter. We excuse him. I hope you will also. 
[Laughter.]
    Ms. Coletti. As you said earlier, I am representing the 
National Coalition of State Alcohol and Drug Treatment Programs 
and Prevention Associations as well as the Legal Action Center.
    Through Federal funds and other funds, the programs that 
I'm representing provide services to addicted parents and 
pregnant women who want better futures for their children; 
addicted individuals in the criminal-justice system; and those 
who can move to a sober and a crime-free life; and millions of 
children and adults at risk for developing alcohol and drug 
problems.
    Thank you, Mr. Chairman and the subcommittee, for last 
year's increases in alcohol and drug treatment and prevention 
research programs, and thank you especially for refusing to cut 
treatment dollars for alcohol and drug programs. Providing 
strong support for alcohol and drug treatment, prevention, and 
research is imperative to maintain and to improve the health 
and well-being of our country. These programs effectively 
decrease alcohol and drug use, crime rate, healthcare costs, 
AIDS, and welfare dependents.
    I understand, as you were talking earlier today, about the 
need for results-driven programs, and I think that this field 
is becoming very cognizant of the importance of making sure of 
outcome results being available to--in order to really justify 
the expenditures that are requested.
    The programs in Florida and around the country such as Par 
have been leaders in developing effective programs for women, 
for youth, and other underserved populations. With the help of 
Congressman Young last year and the year before, and with your 
committee, programs like Par Village, which is a residential, 
actual village which allows mothers who are suffering drug 
dependence to have at least two of their children in residence 
with them to go through residential treatment with at least an 
80 percent success rate and a very low recidivism rate. So it 
is with those kinds of programs that we feel we are really 
making a major contribution. But on any given day, just in the 
State of Florida, there are over 1,400 individuals and families 
that are still in need of substance-abuse treatment services 
such as I am representing today. These people really represent 
just a small portion of the number of people that are in need.
    As the States implement their welfare-reform programs, the 
demand for substance-abuse services will increase, especially 
for women with children. In most of our research, we find that 
at least 16 to 20 percent of individuals on welfare have 
alcohol and drug dependency. It is imperative that they have 
sufficient drug treatment and alcohol treatment if, in fact, we 
are really going to be successful with our welfare reform 
issues.
    Robert Rector, the welfare expert at the Heritage 
Foundation, reported in the September and October issue of the 
Intellectual Ammunition that drug treatment programs improve 
job training readiness. Clearly, the availability ofalcohol and 
drug programs and prevention services must increase if we are going to 
be successful.
    I would like to make some recommendations for providers to 
supply the essential services in our State and throughout the 
Nation. We need your continued support. We urge Congress to 
adopt the following increases for Fiscal Year 1999 funding for 
alcohol and drug treatment, prevention and research programs 
under the Substance Abuse Mental Health and Administration, 
SAMHA, the Department of Education, and the National Institutes 
of Health. These are wise investments that will provide 
desperately needed services for communities across the country. 
$1.564 billion in the substance abuse prevention and treatment 
block grant represents a 15 percent increase over Fiscal Year 
1998 including the $50 million appropriated for the contract 
with the American Advancement Act, $180 million for the Center 
for Substance Abuse Treatment, CESAT and the Center for 
Substance Abuse Prevention, CESAP and the horrible name of 
knowledge development and application projects--I don't think 
any of us like that. Let me just quickly tell you that this is 
not the time to be cutting back on spending for those knowledge 
development and application projects. The congressional support 
for increasing drug abuse research over the past ten years has 
produced an enormous base of knowledge regarding the treatment. 
With that base of knowledge, and with these knowledge 
development application programs that are going on all over the 
country, for the first time, I, who have been in this for 28 
years, can begin to see the coming together and really the 
effective use of knowledge development after research-based 
programs.
    I thank you for your time. I know that today is of timeless 
goings. So, any questions I would be happy to answer.
    Mr. Porter. Ms. Coletti, thank you very much. I agree with 
you, that is a strange name.
    Ms. Coletti. It's awful.
    Mr. Porter. You can work on that.
    Ms. Coletti. I'm trying very hard.
    Mr. Porter. Thank you again. I would imagine that it is 
fair to say that almost every family in the United States has 
been touched by problems with alcohol or drugs and I think that 
we all realize the importance of it and what it costs our 
society, not just our families, but our whole society.
    Ms. Coletti. It's devastating. I started 28 years ago 
because I had a daughter that I discovered at 15 years of age 
was experimenting with drugs. That daughter is now a post-
doctoral fellow student and under a National Institute of Drug 
Abuse Grant, and she is doing fantastic research in the area of 
perinatal addition. So, it does work.
    Mr. Porter. It does work.
    Ms. Coletti. Thank you.
    Mr. Porter. Thank you so much.
    [The prepared statement of Shirley Coletti follows:]


[Pages 872 - 885--The official Committee record contains additional material here.]



                                        Thursday, January 29, 1998.

                                WITNESS

CHARLES E. YOUNG, STATE COMMISSION FOR THE BLIND
    Mr. Porter. Charles E. Young, Administrator, State 
Commission for the Blind, testifying on behalf of the Council 
of State Administrators of the Vocational Rehabilitation.
    Mr. Young. Thank you, Mr. Chairman.
    ``What do you do for a living?'' is a common question upon 
introduction. Can you imagine not having a reply? For in 
employment is how we, as adults, define ourselves. Our 
occupations determine with whom we associate, where and how we 
live. Our jobs are a source of identity, self-worth and 
association. Yet a recent Harris poll indicated that two out of 
every three American adults with disabilities are unemployed. 
The same Harris poll concluded that to have a disability and be 
unable to attain employment is the true meaning of being quote, 
``handicapped,'' in our society.
    Clearly, we have yet to extend the American dream of 
inclusion and full participation in society to many citizens 
with disabilities. Without hope of employment or the training 
to live independently, disabled Americans are denied the 
opportunity to contribute to and fully experience our Nation's 
greatness.
    Limited fiscal resources have so restricted the Nation's 
rehabilitation efforts that today State vocational 
rehabilitation agencies are able to serve only one in twenty 
eligible individuals with disabilities. While the United States 
annually spends in excess of $200 billion maintaining citizens 
with disabilities we allocate less than $2.5 billion on 
rehabilitation leading to employment.
    Clearly by allocating more funds to vocational 
rehabilitation programs we can save hundreds of millions of 
dollars on maintenance. Simply put, vocational rehabilitation 
can be seen as a $2 billion response to a $200 billion problem. 
With adequate funding, State and Federal Government, in 
partnership with the consumers of rehabilitation services can 
create a climate in which Americans with severe disabilities 
will meet the challenge of becoming participating, contributing 
members of our society.
    Approximately 200,000 such Americans with disabilities are 
annually placed into employment by our program. Our efforts to 
streamline the vocational rehabilitation process to be even 
more responsive were recently recognized by Vice President Al 
Gore through the presentation of the Hammer Award.
    It is said that what good government does best is invest in 
the protective independence of its citizenry. Our 
rehabilitation programs place unprecedented faith in the 
abilities of disabled Americans by investing in their career 
choices. The Rehabilitation Act enables Americans with 
disabilities to become productive, independent citizens and 
contributors to their communities. In essence this is the best 
of what America has to offer.
    On behalf of your partners in rehabilitation, we at the 
Council of State Administrators of Vocational Rehabilitation 
applaud the committee members for your efforts to date and 
request you to provide a Federal appropriation of not less than 
$3 billion for Fiscal Year 1999 for vocational rehabilitation 
programs. Together we can change what it means to be an 
American with a disability and enable this population to 
respond with dignity to the central question, ``What do you do 
for a living?'' We could make vocation rehabilitation at least 
a $3 billion response to a $200 billion problem.
    Thank you, Mr. Chairman.
    Mr. Porter. Thank you very much, Mr. Young. We very much 
appreciate you coming and giving us your testimony. It is a 
very important subject for us to work on together. Thank you 
for your appearance.
    [The prepared statement of Charles Young follows:]
    [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.]


[Pages 888 - 890--The official Committee record contains additional material here.]



                                        Thursday, January 29, 1998.

                                WITNESS

JULIE SELLERS, ASSOCIATION FOR PROFESSIONALS IN INFECTION CONTROL AND 
    EPIDEMIOLOGY, INC.
    Mr. Porter. Julie Sellers, registered nurse and Infection 
Control Coordinator for the Louisiana Health System 
representing the Association for Professionals in Infection 
Control and Epidemiology, Incorporated.
    Ms. Sellers. Very good.
    Mr. Porter. Ms. Sellers. Yes, very good, I got through 
that. [Laughter.]
    Ms. Sellers. I'm here today to talk about some savings. I 
am here representing APIC which is the Association for 
Professionals in Infection Control and Epidemiology.
    APIC is a non-profit organization representing nearly 
12,000 individual infection control professionals who work in a 
variety of health care settings. APIC has long been a strong 
proponent of scientifically-based programs and policy designed 
to protect public health such as those of the Centers for 
Disease Control and Prevention.
    We are extremely concerned, however, about regulation that 
is not science-based, is unnecessary and is costly to 
implement. Specifically, I'm speaking today in reference to 
OSHA's proposed rule to prevent tuberculosis exposure to health 
care workers.
    OSHA issued its proposed rule in October. Since that time, 
APIC has been working with a broad-based coalition of health 
care providers to assess the true impact of this proposal. It 
is clear that this role will adversely impact facilities such 
as hospitals, nursing homes, clinics, and homeless shelters. It 
will be virtually ineffective in reducing health care worker 
exposure to TB.
    OSHA's proposal has also incited the concern of the Small 
Business Administration's Office of Advocacy whose officials 
have significant concerns about the economic and technological 
infeasibility of this proposal.
    We health care providers in this country need Congressional 
support in opposing this rule. Chairman Porter, you and 
Congressman Wicker have graciously offered your support and 
have written to Secretary Herman directly to urge a halt to the 
rule's promulgation. OSHA's rationale for issuing a rule on 
preventing TB exposure to health care workers is fundamentally 
flawed. The entire proposal is based on the false premise that 
workers caring for known or suspected TB patients need 
additional protections above and beyond those already in place.
    The real risk to health care workers is not in caring for 
identified TB patients. In these cases, the facilities would 
have already taken the proper precautions to guard against 
worker exposure as recommended by the CDC. The real risk is in 
caring for the patient who has TB but has not yet been 
diagnosed. In fact, if one looks at the factors contributing to 
employee exposure to TB, more than 75 percent of the time the 
source is an undiagnosed patient.
    It can sometimes take days or even weeks to accurately 
diagnose a patient as having TB particularly if he or she is 
initially hospitalized for a different reason or has vague 
systems. During the time that elapses between admission and 
diagnosis, many health care workers may unwittingly be exposed 
to these patients. And unfortunately, these transmissions from 
undiagnosed patients are not readily preventable.
    Indeed, OSHA admits in its own proposal that the 
undiagnosed TB cases are the primary factor in the transmission 
of TB to health care workers. Yet OSHA persists in proposing 
that those protections will eliminate the risk. The protections 
cannot possibly have an impact since they would never be put 
into place in situations where TB is not even suspected.
    A blatant example of OSHA's inappropriate intervention is 
that in its suggestion for health care providers to combine 
task, limit the number of employees entering a TB-isolation 
room, and limit the time that they spend with their patient. 
Limiting access to care poses an ethical dilemma to health care 
facilities whose mission is to care for patients.
    This particular proposal also begs the question, ``If OSHA 
believes that its proposed protections are effective in 
safeguarding against TB exposure, why, then would there be any 
need to minimize the time spent in the room with the patient?''
    OSHA's formulation of this rule is in response to a 
resurgence of TB in the United States that began in 1989 but 
has been under control since 1992. In fact, the incidence of TB 
has now dropped to the lowest national level ever recorded.
    The CDC issued revised guidelines for the prevention and 
control of 1994. These guidelines have been implemented as 
appropriate in a majority of United States' hospitals today. 
Their widespread acceptance is due to the fact that they are 
effective, scientifically sound, and flexible for application 
according to levels of risk.
    In conclusion, APIC firmly believes that the CDC is far 
more knowledgeable than OSHA to handle TB prevention and 
control for both health care workers and consumers. The 
changing nature of infectious diseases makes it imperative that 
any guidelines be flexible and continuously updated. The 
current CDC guidelines provide us with this flexibility. A 
static OSHA regulatory standard would not. There is no need to 
waste taxpayer dollars on a completely separate, OSHA 
regulatory structure to address TB.
    We urge you to challenge OSHA's rationale behind this 
unnecessary regulation. This role will only place additional 
burdens on providers already facing decreasing 
governmentalreimbursements and increasing demands of managed care while 
providing no added protection for health care workers.
    Facilities are currently regulated by a number of entities 
that provide sufficient oversight for protecting both patient 
and employee health.
    We would recommend that there be better cooperation among 
agencies currently involved rather than the promulgation of new 
and overlapping regulations.
    We thank you for your continued support on this issue, and 
I would be happy to answer any questions.
    Mr. Porter. That was absolutely perfect.
    Ms. Sellers. Thank you. [Laughter.]
    Mr. Porter. This regulation is proposed? It has not been 
issued?
    Ms. Sellers. It is only a draft. That is correct.
    Mr. Porter. I know Mr. Wicker has been very concerned about 
that. We will work with him to address your concern and his.
    I have a question. You are missing something. Where is your 
Louisiana accent?
    Ms. Sellers. I work hard not to bring it up here.
    Mr. Porter. You know, you are the second witness from 
Louisiana with no accent. Where is it? You have one at home and 
a different one here?
    Ms. Sellers. Sometimes.
    Mr. Porter. I see.
    Well, we thank you very much for your testimony. We 
obviously agree, and we will work with Mr. Wicker and do our 
best to address that need through OSHA.
    Ms. Sellers. We would appreciate it. Thank you.
    Mr. Porter. Thank you.
    [The prepared statement of Julie Sellers follows:]


[Pages 894 - 905--The official Committee record contains additional material here.]



                                        Thursday, January 29, 1998.

                                WITNESS

AUDREY HORNE, AUTISM SOCIETY OF AMERICA
    Mr. Porter. Audrey Horne, President of the Autism Society 
of America testifying on behalf of the society. Ms. Horne.
    Ms. Horne. Good afternoon, and thank you, Mr. Chairman. I 
come from South Carolina, and I don't bother to try to disguise 
it.
    Mr. Porter. I guess not. [Laughter.]
    Ms. Horne. There is no need to, and I work real hard to 
never lose it even after I've spent seven years working on 
Capitol Hill and associating with folks from all over the 
country.
    I do appreciate the opportunity to come before you on 
behalf of the Autism Society of America, and it is my pleasure 
to enter our testimony into these important deliberations.
    You just said, my name is Audrey Horne. I am the President 
of the Autism Society of America which represents a membership 
of 24,000 fellow advocates.
    I am the mother of a young son, who is an adult now, who 
has autism. He, in his unique needs, and those of my family, 
are the primary reasons for my decision to serve as a volunteer 
in the autism community. My husband and I, almost 30 years ago, 
had our lives come to a very abrupt and dramatic change from 
the birth of this child, our second. Our lives have been 
overshadowed ever since by that. But we have willingly accepted 
the challenge because we love him unconditionally as does his 
older sister and younger brother. We've been blessed by our own 
commitment and that help of others along the way. Remember now, 
if you will, that our son was born before you knew too much 
about autism and there was no mandatory education for the 
handicapped.
    I want to thank you, Mr. Chairman, and for the others who 
serve on this important subcommittee, for the generous support 
that you have given to the needs of persons with autism in both 
the research and service arenas.
    As you probably do know, autism is a serious, lifelong, 
neurological disorder affecting approximately one in seven 
hundred children. The annual cost of cure--or care, we're 
hoping to get to cure--for those with autism in this country 
has been estimated at over $13 billion. The vast majority of 
citizens with autism, even those with exceptional skills, need 
some type of support throughout their lifespans. Without 
effective training and support they would become more and more 
dependent on what was once referred to as welfare programs. 
Although there are promises in behavior and medical treatments 
to improve the quality of life for persons who have autism, at 
this time, we have to say that there is no known biological 
marker or cure for autism. That is, yet.
    I'm asking, please, that you help us. Help us to help 
families who are physically, emotionally, and monetarily 
exhausted. Believe me, I know, because my husband and I are in 
the retirement part of our lives and a lot of other things 
would have made this a lot easier had we not had to expend so 
much on care. We did it without grudge, but it does affect your 
life.
    And on behalf, too, of the hundreds of thousands of 
individuals who themselves have autism but who with the 
appropriate resources would be able to achieve more fulfilling, 
independent lives.
    The ASA--the Autism Society of America--asks you please to 
approve significantly funding levels for the National 
Institutes of Health and to encourage them to utilize that 
increased funding for increased research not only into the 
biology of autism but to into research on treatments and 
services for individuals with autism.
    Chairman Porter, I'm at the stage of my life, and so are 
many other parents, that we can't wait around for the cure. 
We've got to do something for those who are with us now.
    In the past year, the National Institute of Childcare and 
Human Development and the National Institute on Deafness and 
other Communications Disorders have launched the largest, most 
far-reaching research project in autism history. As a result, 
ten collaborative programs on excellence in autism exist 
throughout this country of ours. And they are studying the 
causes of autism, brain structure, and function and howpersons 
with autism change as they age. Greatly increased funding for all of 
the institutes for research that looks for causes for autism, how it 
develops, what is needed to treat the disorder, and ultimately, we do 
hope it can be prevented and be cured. It is just desperately needed, 
sir.
    This is an exciting time for parents of those who are 
impeded by this devastating disorder. At long last, we do have 
collaboration by research entities and sufficient funding 
appears to be at hand. Research findings suggest that there 
is--that the period of plasticity--when experience and 
intervention can change the brain--is much longer than was 
previously thought. And that certainly is encouraging to us. 
With valid treatments, we'll be able, we believe--and I believe 
this--and this would be reinforced by science--to improve what 
was once felt just to be irreversible damage. The NIH has 
mounted a campaign to understand the neuro-biology and genetics 
of autism.
    Please continue your support of them and their efforts. 
They may be able to put the same energy and funding and to 
evaluate and improve treatments for citizens who already have 
autism. Help the NIH with this increased funding so that we may 
be able to work with them with full up coffers just as strong 
as the medical ones and they may have the means to use the same 
level of creativity and be able to do a top-notch job in the 
biology of autism.
    There is a great deal that we don't know about autism. 
However, in the past, it has been the parents who knew more 
about it than anybody else because we live with it. Now, 
increasingly more and more the scientists and educators are 
learning a great deal more and can help us. There is a great 
deal that we don't know.
    But the greater tragedy is that this country's children and 
adults who do have autism are not getting the best of what we 
already have. That should not be allowed to persist. You 
personally, Chairman Porter, and the people who work with you 
having previously shown your support for children--particularly 
those with special needs--your recent reauthorization of IDEA 
last session without any crippling amendments that would have 
eroded our children's rights was tangible evidence that 
dedication and wisdom. Thank you very much for your resistance 
for any efforts to undermine that. Aside from right now being 
the right thing to do, it is the smart thing. It is cost-
effective in the long run.
    Your continued support for the needs of our families will 
go a long way in abating our growing fears.
    Parents age, and usually we know that parents die before 
their children do. Normally that is a part of the natural order 
of life. But one of the greatest fears that parents of adult 
have is dying and leaving and there being no one to do for our 
children. We are not asking for any benevolent government, of 
course, to come in and do parent for us, but we do ask if you 
will please become partners with us in alleviating some of this 
pain and anxiety and help us to make improvements and to make 
cost-effective ones.
    Our fervent prayer in the Autism Society of America is that 
none shall be left unserved or underserved, as we continue our 
advocacy.
    I do most respectfully thank you for your time, your 
patience, and your understanding, and Chairman Porter, your 
compassion. Please be assured that the Autism Society of 
America spends as much as we possibly can within our limited 
resources to promote public awareness about our autism and to 
disseminate information that is accurate and up to date.
    Thank you so much. It was worth the trip from South 
Carolina to come before this subcommittee and before a chairman 
whose activities I follow closely and admire so very much.
    Mr. Porter. Well, Ms. Horne, you're very kind. This 
subcommittee really has been encouraging NIH to put autism at a 
much higher priority, and we are as glad as you are that they 
have chosen to do that in their new initiative.
    Could I ask one question?
    Ms. Horne. Surely. If I can answer it, I'll be glad to.
    Mr. Porter. Well, tell me the circumstances of your son 
now.
    Ms. Horne  Thankfully----
    Mr. Porter. He's 30 years old, did you say?
    Ms. Horne. Yes, he'll be 30 next summer. We didn't have 
intervention as soon as we would have liked to have, but 
because of our own planning and the cooperation, I will say, 
the legislature and executive branches in South Carolina 
government to address this need, to make a long story short, he 
resides in Charleston, South Carolina now in a house with two 
other young men who have autism with staff around the clock. He 
works in the community. He is a wage-earner, and he's at just 
about the level now to start paying taxes. I know you'll be 
glad to hear that, and we all are, because we want him to have 
self-respect.
    He's still got a long way to go. His communication 
disorders are still there, but he's enjoying a level of support 
and of living that has dignity in it, and does give his father 
and I more assurances as we age. We know that his brother and 
his sister will be his advocates, but they have families. 
Needless to say, we are grandparents also, as well as parents, 
and people have been so responsive. And that's one reason that 
I chose to serve in the first place, was, it may sound corny, 
Chairman Porter, but my husband and I decided that we wanted to 
take as many people along with us as we could, not to get it 
all just ourselves.
    Mr. Porter. Well, we're delighted that you are taking that 
leadership role and that you've come all the way from South 
Carolina to testify before the subcommittee, and you brought 
your accent with you.
    Ms. Horne. Yes, sir, and I plan to take it home tonight. 
[Laughter.]
    Thank you.
    Mr. Porter. I'm going to come down in a couple of weeks, 
and we have a conference I'm attending in Charleston.
    Ms. Horne. Oh, well, I live quite near Charleston there. 
Where was your conference going to be, if I might ask?
    Mr. Porter. I can't tell you the name of the--it's probably 
the nicest place, though, right in the historic area----
    Ms. Horne. That's good.
    Mr. Porter [continuing]. They said five or six blocks from 
the Battery or from the water at least.
    Ms. Horne. We are having a quarterly board meeting. I'm 
flying back tonight, and Dr. Zaro, who came with me, is our 
executive director--so that I invited them to come to 
Charleston because I said they needed to be--everybody needs 
some time to go where the birth of civility was. [Laughter.]
    That sounds chauvinistic, I know, but I am proud of our 
State, and we will be----
    Mr. Porter. I can hardly tell.
    Ms. Horne. Yes, you can hardly tell. We're meeting at the 
Mills House Hotel in the historic district.
    Good luck, and I know that you've probably been to South 
Carolina before, but----
    Mr. Porter. Yes, I have.
    Ms. Horne [continuing]. I know that you will be most 
welcome there.
    Mr. Porter. Well, thank you very much.
    Ms. Horne. Thank you.
    [The prepared statement of Audrey Horne follows:]


[Pages 910 - 916--The official Committee record contains additional material here.]



                                        Thursday, January 29, 1998.

                                WITNESS

ROBERT STILLMAN, AMERICAN SOCIETY FOR REPRODUCTIVE MEDICINE
    Mr. Porter. Robert Stillman, M.D., director, American 
Society for Reproductive Medicine, testifying in behalf of the 
Society. Dr. Stillman. You are last but not least.
    Dr. Stillman. I appreciate it.
    Mr. Porter. I'm sorry to keep you so long.
    Dr. Stillman. No, I apologize for keeping you so long, but 
that is a very tough act to follow, but I'll see if I can keep 
my Illinois accent under abeyance.
    Mr. Porter. Illinois accents do very well here as well. 
[Laughter.]
    Dr. Stillman. I understand.
    I'm medical director of the Shady Grove Fertility Centers 
here in Washington--I have come a very short way actually--and 
clinical professor of obstetrics and gynecology at Georgetown. 
I have the honor of serving on the board of directors of the 
American Society for Reproductive Medicine, the ASRM, whom I am 
representing here today.
    ASRM is the Nation's leading professional organization for 
reproductive medicine. More than 9,000 members are its leading 
practitioners and investigators in the field. We're grateful 
for the opportunity, albeit late, keeping you all here today, 
to appear before you and offer our views on the 1999 
appropriations.
    We have an interest in the number of the agencies before 
this committee in your purview, but I'll confine my comments 
here today to two: the National Institutes of Health and 
Centers for Disease Control and Prevention.
    When discussing NIH, I must first begin by thanking the 
members of the committee and you for the strong bipartisan 
support for medical research over the last years, as you've 
heard all day today, with which we concur. Many of the Members 
of the Congress are calling for a doubling of the NIH budget, 
and we strongly concur with that and applaud the Members and 
the President for the stand in that.
    As a beginning point to the doubling of the budget, we, 
too, as the other speakers here today, have recommended 
increasing the NIH budget for 15 percent for 1999. We are 
joined in this also by more than 200 members of the Ad Hoc 
Group of Medical Research Funding, a broad-based coalition of 
patient advocacy groups and professional organizations.
    Specifically, most of the research in reproductive 
medicine, however, is funded through the NICHD, the National 
Institutes of Child Health and Human Development, and we also 
recommend that NICHD's appropriation be increased 15 percent 
for Fiscal Year 1999. Time will not allow me to discuss many of 
the fine programs, unless we'd like to stay much longer, but I 
do want to draw your attention to just two.
    One is the contraceptive and infertility research centers. 
These centers have not received full authorized funding level, 
and we strongly encourage you to do that funding.
    The second is a new one, and thanks to your leadership, 
NICHD is starting this year the women's reproductive health 
research career development programs. The program will allot $3 
million from NICHD to top academic departments around the 
country to facilitate training and career development for young 
investigators in women's reproductive health issues. The 
program will both enhance reproductive research now and invest 
in tomorrow's investigators at a critical and vulnerable time 
in their careers, and at a time when many, many promising young 
lives are leaving academics and research due to the lack of 
funding.
    Regarding the Centers for Disease Control and Prevention, 
in December, CDC, in conjunction with ASRM, in conjunction also 
with one of our affiliate societies, the Society for Assisted 
Reproductive Technology, SART, and RESOLVE, the national 
patient advocacy and fertility group, published the 1995 
Assisted Reproductive Technology Success Rates Report. This 
publishing partnership was developed under the terms of the 
1992 Fertility Clinic Success Rate and Certification Act, 
sponsored particularly by Representative Wyden. The report was, 
unfortunately, delayed from 1992 because of the lack of funding 
of the law, and finally it was enacted and supported, and the 
publication just came out. So thanks to that congressional 
leadership, consumers now have access to outcome data unlike 
that available in any other field of medicine.
    By working together, government, patients, and providers 
have made it easier than ever for patients to be well-informed 
medical consumers. CDC has done an excellent job in 
implementing the law. However, Congress did not make available 
additional funds for its implementation. This lack of funds has 
also caused the delay of implementation in the second part of 
the same act, the certification component, which is meant to 
develop standards for embryology laboratories, a very important 
issue.
    In order to ensure that CDC can fully implement the terms 
of the law, ASRM recommends $7 million be specifically 
allocated by Congress to CDC for that purpose. Please invest in 
the future health of this country with the adequate funding of 
NIH and CDC programs, as you've supported to date.
    I appreciate the opportunity to be here. We'd welcome any 
questions.
    Mr. Porter. Dr. Stillman, let me see if I can understand 
this part about CDC and the implementation of the law. Say 
again why--I thought you said that we had not provided funding 
to implement the law.
    Dr. Stillman. There was a long period of time when there 
was basically an unfunded mandate. There was the law, but not 
funding for it, and that was the difference between 1992and 
1995. Currently, as I understand it, there is no funding for 
continuation of CDC's support for them to implement the law. So CDC is 
required to implement the provisions of the law, but doesn't have the 
funding for it or adequate funding for it, in particular, regarding 
embryology laboratories.
    Mr. Porter. Let me look into this further and see why that 
is so. I was not aware. We have attempted to provide funding 
for whatever CDC asks for. Obviously, there's no line item for 
it----
    Dr. Stillman. Right.
    Mr. Porter [continuing]. But we have provided them 
substantial increases in recent years, and there should be 
funds for them to carry out that mandate. But let me check it.
    Dr. Stillman. I appreciate it.
    Mr. Porter. One other thing I'd like to say, and that is 
that the President's proposal is to increase to double-funding 
for research over 10 years and not 5. And we expect the 
President's budget to show about an 8 percent, 8.2 percent 
increase for NIH, which would reflect that doubling over 10 
years. While this is very good news, because the President's 
budgets in the past have not been nearly that strong, it is not 
the same as the proposal of the Ad Hoc Committee, which is to 
double it over five years. So while I'm encouraged, I think 
it's fair to say we're going to have to work very hard and work 
with the Budget Committee to see if we can get the resources we 
need to raise that entire funding level higher, and that means 
we're going to have to impact the American people with the 
importance of this, in order to get that message back to 
Congress.
    So thank you very much for coming in to testify. I again 
apologize for keeping you so late. We appreciate your informing 
us. I will look into this matter, particular matter, because 
I'm not aware of why that isn't being accomplished.
    Dr. Stillman. Let me know if I can help.
    Mr. Porter. Thank you.
    Dr. Stillman. Thank you.
    [The prepared statement of Robert Stillman, M.D., follows:]
    [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.]


[Pages 920 - 925--The official Committee record contains additional material here.]



    Mr. Porter. The subcommittee will stand in recess until 
10:00 a.m. next Tuesday.
                                         Tuesday, February 3, 1998.

                                WITNESS

ARTHUR J. AMMANN, M.D., AMERICAN FOUNDATION FOR AIDS RESEARCH
    Mr. Porter. The subcommittee will come to order.
    This is the fifth of nine sessions of two hours each with 
public witnesses that the subcommittee will conduct that puts 
us somewhere near 200 public witnesses. We're trying to 
accommodate as many as possible. We realize that not all can be 
accommodated. We have done our best to give everyone a chance 
to testify who's interested in doing so.
    Because we have so many witnesses and so short a time, we 
have to be very insistent on the five minute limit. Up to this 
point, I have to say, the witnesses have been very good about 
that, and many obviously time their testimony so that it comes 
out right about the exact time.
    The staff has gotten even tougher, because they now have a 
timing device. And if you hear the ringing of the little bell, 
you'll know that that's the five minutes. Carol Murphy is in 
charge of that this morning.
    We welcome your testimony. The reason we have it early is 
that there are fewer chances for interruptions by votes on the 
floor. This year the President got his budget out in time so 
that you actually can if you want to comment on the numbers 
that you see the President has presented.
    So we thank each one of you for coming this morning. We'll 
listen very intently to what you have to say.
    Mr. Porter. We will begin our hearing this morning with 
Arthur J. Ammann, M.D., President of the American Foundation 
for AIDS Research, testifying in behalf of the Foundation. Dr. 
Ammann, why don't you take the center seat there, if you will, 
and proceed.
    Dr. Ammann. Chairman Porter and members of the committee, 
thank you for inviting me to appear before you. I'm Dr. Ammann, 
President of the American Foundation of AIDS Research. My 
experience includes that of being a pediatrician. I worked at 
the University of California. I also worked for a biotechnology 
company called GENINTEX, and now I'm working with foundations.
    In all those areas, I have seen the broad benefits of NIH-
sponsored research. It has really been dramatic. Last year as I 
appeared before this committee on behalf of the HIV/AIDS 
community, we asked for an across the board increase in NIH 
funding. Your committee and Congress responded, for which we 
are thankful.
    I think we are now witnessing one of the most dramatic 
increases in discovery in biomedical history. Today I urge you 
and your committee to keep this momentum going. AmFAR joins 
other advocates in biomedical research in asking for a 15 
percent across the board increase for NIH.
    I just returned from Chicago, Illinois. Going on right now 
is an HIV/AIDS committee in which I'm seeing the dramatic 
impact of NIH-supported research. We're really changing the 
face of this disease.
    Many HIV infected individuals are living longer. They have 
now healthy and productive lives. In most cases we can prevent 
the accidental transmission of HIV. Very dramatically, we are 
at the point of eradicating HIV infection in newborn infants as 
it's transmitted from mothers to infants because of NIH-
sponsored research.
    But the discoveries made in HIV/AIDS are reaching out very 
broadly. They're touching the lives of thousands of individuals 
with other diseases as well. Before the HIV/AIDS epidemic, as I 
dealt with immuno-deficient patients, we had very few 
treatments available for opportunistic infections. Because of 
patients with HIV/AIDS and research, we now have multiple 
treatments that people can choose from to treat these very 
devastating diseases. These are people with cancer, kidney 
transplant, genetic disorders as well.
    We also believe that HIV/AIDS has benefitted from the 
research done in other areas, cancer and neurology. For that 
reason, we feel there should not be a disease versus disease 
debate in terms of funding. Rather, the scientific community, 
armed with a strong NIH, adequate resources, the leadership of 
Dr. William Paul, that he has given to the OAR, we need another 
director, that needs to continue, and we're grateful for Dr. 
Harold Varmus, who has really shown strong leadership for the 
National Institutes of Health.
    The question is, if we have been so successful in HIV/AIDS, 
do we need more support for HIV/AIDS. I would say emphatically, 
yes, we do. We have problems with AIDS. We've changed the 
mortality related to AIDS. We have fewer people with AIDS for 
the first time, but we have more HIV infected people. We have 
not cured a single patient with HIV infection.
    So we have concerns that mean we have to do more research. 
We need better therapy, we need safer therapy, and less toxic 
therapy. We have to deal with the inevitable emergence of 
resistant virus. We need better therapy for opportunistic 
infection. We need therapy that's simpler, because we are 
seeing a discrepancy in the benefit from the research in 
disadvantaged populations.
    I think we also need to recognize that we have to implement 
every ethical safe and effective measure that has been 
scientifically proven to work, such as needle exchange. 
Critically, we need a safe and protective vaccine so that every 
man, woman and child can be protected from this devastating 
infection.
    Finally, we need to recognize that while we have a 
partially controlled disease in the United States and reduction 
of transmission, we are looking at an international epidemic 
that involves 16,000 new infections, including 1,500in 
children, each year. For moral, biologic and even selfish reasons, we 
need in this country to perform research that will address these very 
critical issues. Because these issues will also eventually affect us as 
well.
    I would like to thank you for your support in the past, and 
urge you to continue to support a strong NIH, to continue to 
support HIV/AIDS research. Because without it, HIV/AIDS will 
become the number one health concern of all nations, including 
ours. I have submitted detailed written testimony and an 
appendix which talks about the broad benefits of AIDS research.
    Chairman Porter, members of the committee, thank you for 
this time.
    [The prepared statement of Arthur J. Ammann, M.D., 
follows:]


[Pages 930 - 942--The official Committee record contains additional material here.]



    Mr. Porter. Dr. Ammann, thank you for your testimony. I 
think I can assure you that the subcommittee will continue to 
place HIV/AIDS at a very high priority. We were happy to see 
that the President's budget gave it that priority in his 
judgment.
    Because you're our first witness and have mentioned the 15 
percent increase that others have mentioned, you get subjected 
to my sermonette that I have subjected all of our witness 
groups to. And that is that we have to realize that first, the 
budget is not in balance yet. The President has submitted a 
budget that is in balance, in fact shows a small surplus.
    But as part of that, he includes about $100 billion of new 
revenues. I think it's fair to say, and Mr. Hoyer may wish to 
correct me if he sees it differently, that those revenues are 
in this year at least highly problematical, and that a lot of 
the funding increases that the President suggests in 
discretionary programs are dependent upon revenues that may 
not, in my judgment, probably will not, materialize in the 
budget process.
    So that means that if you're really interested in the 15 
percent increase, the budget committee is where the action is 
going to lie, at least in the first instance. I would urge 
persons that are concerned, not only with biomedical research, 
but with all the programs before the subcommittee, that we 
can't do very well if we don't have the kind of allocation from 
a budget that reflects it that will give us the resources we 
need to make these kinds of judgments.
    So that's my sermonette for today. We've got to aim 
ourselves at the budget process in the first instance and work 
for a good, strong allocation that will allow us to do the 
things that we'd like to do.
    Do you want to take issue with that, Mr. Hoyer?
    Mr. Hoyer. Well, Mr. Chairman, I think clearly some of the 
spending included in the President's budget is contingent upon 
revenues being generated. That is not a sure thing. The 
Chairman's right on that. Therefore, it will not be sufficient 
to simply focus on this committee's appropriation of funds, but 
also to focus on both the budget committee and other 
committees, authorizing committee, which may impact on that 
revenue stream. The Chairman's correct on that.
    I think what the President has done properly is to project 
revenues that might possibly occur and set forth a plan to 
invest those resources in the event that the resources occur. 
Frankly, from my perspective on the tobacco settlement in 
particular, that is added reasons for the Congress to act on 
this matter. I'm hopeful that they will.
    But I think the Chairman's correct, that the money's not in 
hand at this point in time. I would comment, however, that I am 
very pleased that the President, for the first time in 30 years 
has projected a balance in light of the projections he has 
made. That has never occurred, whether the revenues were 
problematic or not.
    This is the first budget that has suggested that it was 
going to be in balance. And I think, the President is 
rightfully very proud of that. We on our side are proud of 
that. I think the Republicans can be proud of it as well, to 
the extent that the ability to do that was in some respects a 
joint effort. I think the Congress will want to stick with 
that, and in fact, reach the balance. But that will put added 
pressure on making sure that the revenues do, are realized.
    Thank you, Mr. Chairman.
    Mr. Porter. Thank you, Mr. Hoyer. My sermonette number two 
is let's keep this strong economy going, because it's creating 
the revenue stream that allows us to do all of these things.
    Thank you, Dr. Ammann, for your testimony.
    Mr. Hoyer. He didn't add as a result of the 1993 economic 
program at present, but I'm sure he meant that.
    Mr. Porter. No, I didn't, and I didn't on purpose. It 
resulted from a private sector which reorganized itself in ways 
to be competitive over a long period of time, and we've 
achieved that.
                              ----------                              --
--------

                                         Tuesday, February 3, 1998.

                                WITNESS

ROBERT M. TOBIAS, THE NATIONAL TREASURY EMPLOYEES UNION
    Mr. Porter. Robert M. Tobias, National President, the 
National Treasury Employees Union, testifying in behalf of the 
Union. I recognize Mr. Hoyer.
    Mr. Hoyer. Mr. Chairman, I'm pleased to have the 
opportunity to say just a word about Bob Tobias. Bob Tobias is, 
as you know, a President of the National Treasury Employees 
Union, and in my opinion, one of the most articulate, able, 
forceful and visionary leaders that we have representing 
working people in this country.
    He happens to represent Federal employees who are a part of 
that large working group that keeps this country going. I'm 
pleased to welcome him to our committee. He's a lawyer, an 
outstanding background as a Federal employee and now as a 
leader, frankly, in the reform effort at the Internal Revenue 
Service, many of whose employees are members of his union.
    He was on the commission that recommended reform, and he 
has been working, I know, very closely with the new director, 
Mr. Rosatti, who told me the other day that I was absolutely 
correct in my judgment that we ought to spend a lot of time 
with Bob Tobias in working towards reforming the IRS, making it 
work better, more user friendly and more effective and 
efficient a service to the American public. So I'm pleased to 
welcome Bob to our committee.
    Mr. Tobias. Thank you, Congressman Hoyer, and Mr.Chairman. 
I am very pleased to be here to speak on behalf of the employees of 
Health and Human Services.
    Mr. Chairman, Congress spends a great deal of energy and 
effort creating policy and then designing programs, but very 
little time thinking about whether or not the program, the 
policy that's been created and the programs that have been 
designed are actually implemented in a way that impacts on the 
public in the way the policy was created and the program was 
designed.
    It seems to me that as the board of directors of the 
Executive Branch, which is how I see the relationship as it 
impacts on the employees of the Executive Branch, I ask that 
you spend some time thinking about the problems of program 
implementation. Now, those who are responsible for program 
implementation, the Federal employees in HHS, have a very low 
morale.
    And for good reason. There are 300,000 fewer employees, but 
no reduction in mission. There are new roles, new 
responsibilities, but no increase in training budgets, so that 
people can acquire new skills in order to deliver a changed 
work process to the public. The continued threats of reductions 
in force create fear in the work place.
    And morale makes a difference in the quality of the 
products delivered. There's a great deal of data in the private 
sector, and we're developing similar data in the Federal 
sector, that when employees say they are satisfied on the job, 
when their job satisfaction is high, they also deliver better 
service to the public.
    So there's a direct link between the training funds you 
provide, the technology you make available, and the stability 
that you provide in the work place to the service that the 
public receives.
    Now, these are issues, I believe, too long ignored. Many in 
Congress have merely assumed that eliminating 300,000 positions 
will have no impact on the service delivered, that this effort 
has merely eliminated the so-called deadwood.
    I can assure you that the reduction in agency budgets, in 
particular, in the training provided, has made service delivery 
much more difficult. Federal employees want to do a good job. I 
ask that you not only consider policy and programs, but also 
program implementation. That in your role, you ensure that 
employees receive the training they need and the technology 
they need in order to deliver the programs that you work so 
hard and debate so long to create.
    Thank you, Mr. Chairman.
    [The prepared statement of Robert Tobias follows:]


[Pages 946 - 953--The official Committee record contains additional material here.]



    Mr. Porter. Mr. Tobias, I think you make very good points. 
Obviously, part of the reduction in work force should relate to 
the turning over of the detail, at least, of policy to the 
states and local governments. We have done a great deal more of 
that, and we should need fewer people at the Federal level to 
carry out policies that rely much more upon other levels of 
government.
    But I think you're absolutely right about providing for the 
morale of Federal employees and funds for training them. I 
might add to that also, to pay them fairly. I think we attempt 
to do the best job we can within the limits of our resources to 
do that. But obviously, we're going to take a look at that and 
try to do better.
    Mr. Tobias. Thank you.
    Mr. Porter. Mr. Hoyer.
    Mr. Hoyer. I just want to make a brief comment on that. I 
think you're correct, obviously, where we have shifted 
responsibilities. In fact, of course, the way we reduced the 
Federal employee complement of personnel was not to look at 
mission and work load, it was to simply look at numbers and 
dollars.
    As you recall, what we did was, we ultimately came to the 
273,000, which we have now exceeded by almost 60,000, where we 
have the lowest work force we've had since the Kennedy 
Administration. What we did was, we determined a good 
objective, that was fighting crime in America, which has been 
very successful. We then set up a trust fund, as you recall, to 
fund that heightened crime fight.
    And that trust fund was established from the reduction in 
Federal employees, so that the necessity for the money and the 
objective of simply reducing the work force drove us more than 
making a comparison between work loads and complement necessary 
to accomplish those work loads. I think that's an excellent 
point that Mr. Tobias is making.
    Obviously you are correct, when we shift, when we either 
downsize workload then we can reduce personnel. Or when we 
shift work to either the private sector or to the states and 
municipalities, we can downsize Federal personnel. 
Unfortunately, we went at it backwards, and we need to make 
sure that there is a relationship between work load and numbers 
of personnel available to accomplish the work load objectives 
that the Congress and the President set.
    Mr. Tobias. Mr. Chairman, you mentioned that the private 
sector had done a great deal of reorganizing over the past 10 
years. I think that what Congressman Hoyer is saying is right 
on the mark, very few companies have downsized by establishing 
a goal of downsizing without first identifying what their 
mission is, what the appropriate structure ought to be to 
support that mission, re-engineering the effort to produce the 
service as the Federal Government has done.
    So what we find is, some agencies have done that work, many 
have not. So we have no reduction in mission, no re-
engineering. We still have the same responsibility to be 
delivered with untrained employees without the technology they 
need. That obviously creates a work place with low morale and 
low service delivery.
    Mr. Porter. I'd love to continue the discussion, but Mr. 
Tobias, we thank you for your testimony. I think you have 
pointed out matters that should concern this subcommittee and 
do.
    Mr. Tobias. Thank you very much.
                              ----------                              --
--------

                                         Tuesday, February 3, 1998.

                                WITNESS

VICKI MODELL, THE JEFFREY MODELL FOUNDATION
    Mr. Porter. Our next witness is Vicki Modell, the Vice 
President of the Jeffrey Modell Foundation, testifying in 
behalf of the Foundation.
    Ms. Modell, it's nice to see you again. We are great fans 
of your commitment.
    Ms. Modell. Thank you very much, and good morning, Mr. 
Chairman and members of this committee.
    I'm honored to have the opportunity to testify before you 
again this year to talk about success. Success that this 
committee helped to create. But I'll also talk about some 
things that remain to be done.
    When I testified the first time in 1996, the Jeffrey Modell 
Foundation was a small, grass roots foundation, representing 
more than 500,000 Americans, mostly children, and a like number 
of undiagnosed with something called primary or genetic immune 
deficiency.
    Previously, these families had no voice, no visibility in 
the media, little research at the NIH and most tragically, very 
little reason to hope. These children were chronically and 
oftentimes fatally ill. Their prospects for effective treatment 
were dim and a cure was remote.
    I understood their pain and suffering. I understood it too 
well, for we had faced the same pain with our son Jeffrey, who 
unfortunately and tragically was taken from us at the age of 
15.
    But soon after our loss, my husband and I came before this 
committee with an idea and a plan, a simple, yet comprehensive 
plan to help these children as quickly and as efficiently as we 
could through a partnership with the National Institutes of 
Health. We asked for a hand, not a handout. And offered to fund 
our share every step along the way with the NIH. We sought your 
encouragement and support in programs of public awareness, 
physician education and research. You said yes, and together, 
hand in hand, we went forward.
    Today, I'm here to report back to you that the plan has 
worked. I can point out with pride that this kind of 
partnership has now become a shining model for a new form of 
public-private partnership throughout the campus of the NIH. In 
the area of public awareness, we created an illustrated ten 
warning signs poster in English and Spanish that has been 
distributed to pediatricians and primary care physicians 
nationwide.
    Former Surgeon General, Dr. C. Everett Koop, and NIAID 
Director, Dr. Anthony Fauci, joined with us in producing an 
informative video which will target medical schools, school 
nurses, physician conference and community outreach.
    We worked with three NIH institutes and the American Red 
Cross to produce our seventh symposium for primary care 
physicians. This one dealt with approaches for diagnosis and 
treatment using an interactive satellite hookup that was beamed 
to physicians in 32 cities and 21 States, including the annual 
meeting of the American Academy of Pediatrics in New Orleans.
    At the Genome Institute, where we have funded post-doctoral 
fellows, the genes that cause more than one-third of these 
diseases have been identified. That's exciting. We're co-
funding with NIAID and NICHD outstanding research projects that 
would otherwise have gone unfunded, and they are at the 
University of Washington in Seattle, Children's Hospital in Los 
Angeles, the University of Florida in Gainesville, and Duke.
    To build on the biomedical research, we have redoubled our 
efforts in clinical research. We now support major research 
centers at the Mount Sinai Medical Center in New York City, at 
Boston Children's Hospital and at the Harvard Medical School. 
It's important to remember that the most effective gene therapy 
treatments so far have been conducted on our immuno-deficient 
patients.
    We see the results of the clinical research every day. We 
learn of more and more patients who are diagnosed early and 
correctly, treated appropriately and are able to lead more 
normal and productive lives. And isn't that what it's all 
about?
    We've done our part by co-funding with the NIH every step 
of the way. For all the money we can raise and all the heart 
that we can pour into this effort, it is becoming increasingly 
difficult for grass roots organizations like ours to keep up 
the pace.
    I pledge to you that we will continue to do our share. For 
as you know, we are working in our son's memory, and we will 
not, nor cannot reset, until this disease is defeated. We need 
this committee to make clear its strong and unequivocal support 
and encouragement of what we are doing.
    This model of collaboration seems so right. Most 
importantly, it has worked. I think of it like a kind of 
circle. It's a circle that connects public awareness to 
physician education to biomedical research to clinical 
research, and finally, to clinical application.
    In the music from the Lion King, Elton John describes a 
path unwinding which he calls the circle of life. It's the 
wheel of fortune, it's a leap of faith, and it's a band of 
hope. Working together, please let's complete the circle of 
life and give hope and faith to the half a million children 
with primary immunodeficiency.
    Thank you.
    [The prepared statement of Vicki Modell follows:]


[Pages 957 - 963--The official Committee record contains additional material here.]



    Mr. Porter. Ms. Modell, I think that you are very much on 
the cutting edge of what I see to be the future of funding of 
medical research in our country. Because I think 25 to 30 years 
from now, I would imagine that half the money going into 
research will come from private foundations like the one you've 
established in memory of your son, and will be a very, very 
important lever to direct research in our country.
    So you're there at the opening bell and making a great 
difference. We very much admire your commitment and your 
willingness to make a difference in respect to research in this 
very important area. So thank you for being with us this 
morning.
    Ms. Model. We thank you.
    Mrs. Lowey. Mr. Chairman?
    Mr. Porter. Mrs. Lowey.
    Mrs. Lowey. Mr. Chairman, I want to join you in welcoming 
and thanking you. I truly thank you and admire you, Vicki, and 
I see your husband Fred here today, for the extraordinary work 
you're doing. We all hope that our lifetime can yield some 
important work, some important difference, can affect the lives 
of others.
    Well, you and Fred have made a powerful difference. I just 
wanted to express our appreciation. I know that this committee 
will continue to work in partnership with you so that thousands 
and thousands of children will have a better life. We thank you 
very much and thank you, Fred. And we thank all the members of 
your foundation.
    Ms. Modell. Thank you very much. Your words this morning 
really have made it all worthwhile, and I won't stop now. And I 
thank you.
                              ----------                              

                                         Tuesday, February 3, 1998.

                                WITNESS

STEVEN MIRIN, M.D., AMERICAN PSYCHIATRIC ASSOCIATION
    Mr. Porter. Our next witness this morning is Steven Mirin, 
M.D., Medical Director, American Psychiatric Association, 
testifying in behalf of the Association.
    Dr. Mirin.
    Dr. Mirin. Thank you, Chairman Porter and members of the 
subcommittee. I am pleased to be here today representing the 
American Psychiatric Association, which is one of the Nation's 
oldest medical specialty societies, representing 42,000 
psychiatrists and just as importantly, millions of our 
patients.
    I'm providing this testimony in collaboration with the 
statement of the ad hoc group for medical research funding 
which calls for a 15 percent increase in NIH funding for fiscal 
year 1999, an important benchmark in the effort to double the 
NIH budget over the next five years. Chairman Porter, I am 
mindful of your advice at the beginning of this session.
    Today, I will present the APA's specific recommendations 
regarding the fiscal year 1999 appropriations for the National 
Institute of Mental Health, National Institute on Drug Abuse, 
National Institute on Alcohol Abuse and Alcoholism and the 
Center for Mental Health Services within the Substance Abuse 
and Mental Health Services Administration.
    The prevalence and impact of mental illness and 
addictivedisorders is often underestimated. But the magnitude of the 
problem is significant. Indeed, worldwide, these diseases are among the 
leading causes of disability. In our own country, when one considers 
the toll from medical morbidity and mortality, lost productivity, and 
the costs of treatment and law enforcement, the aggregate burden of 
severe mental illness now exceeds $300 billion a year.
    Thanks to the research advances of the last two decades, we 
now know that severe mental illness and addictive disorders are 
not a consequence of inadequate patenting, lack of will, poor 
self-control or moral failure. They are diseases of the brain 
whose development is influenced by a host of genetic, 
biological and psychological factors that are just beginning to 
be understood.
    More importantly, we know that these disorders are 
eminently treatable, and that the results of treatment are 
comparable and in some cases better than the treatment for 
illnesses like heart diseases and cancer. Thus, while the 
personal and societal costs of mental illness and addictive 
disorders are high, an investment in research and treatment 
will help save lives, strengthen families and save taxpayer 
dollars.
    At the NIMH, basic and clinical research has helped lay the 
groundwork for the development of a new generation of 
medications for schizophrenia, depression and other mental 
disorders. These new medications are more effective, have far 
fewer side effects, and are benefitting more patients than ever 
before.
    For example, NIMH funded research on the anti-psychotic 
drug Clozapine has helped thousands of individuals afflicted by 
schizophrenia to leave hospitals and in many cases to hold a 
job and live independently for the first time in their lives. 
Economic estimates suggest that the introduction of Clozapine 
alone saves our Nation approximately $1.4 billion a year in 
health care and other costs.
    But a lot of work lies before us. APA particularly supports 
NIMH's commitment to expand research on mental illness in 
children. An estimated 20 percent of American youth, 11 million 
people in all, have serious emotional or behavioral disorders. 
Two-thirds of those are not getting any treatment at all.
    The effects of these illnesses on the lives of our children 
and on their families are enormous. Children with untreated 
cognitive or emotional disorders cannot learn or benefit from 
the kind of peer and family relationships essential to becoming 
a healthy and productive adult. These children are also at 
increased risk of alcohol and drug abuse, criminal behavior and 
suicide. We urge continued support for the child health 
initiatives currently underway at NIMH.
    Turning to drug addiction, this is clearly one of the most 
serious problems our Nation faces. The economic and social 
costs are staggering.
    In addition, illicit drug use is a major factor in the 
spread of infectious diseases like AIDS, hepatitis, and now 
treatment-resistant tuberculosis. Because it is such an 
important problem, the National Institute on Drug Abuse has 
developed a broad research portfolio that addresses the most 
fundamental questions about these disorders, ranging from how 
drugs work in the brain to how we can reach into families and 
communities to learn why some people are at increased risk for 
drug abuse, while others in the same family and in the same 
neighborhood are immune.
    Over the past decade, NIDA-funded research has provided us 
with a far better understanding of the process of addiction and 
enabled us to develop increasingly effective treatments for 
these disorders.
    The final NIH priority I will discuss today involves our 
research efforts on a substance that is legal but kills 
approximately 110,000 of our citizens each year. Although the 
use of alcohol is culturally acceptable in our society, we all 
know the human suffering that alcoholism visits on affected 
individuals and on their families. Chronic heavy drinking often 
results in profound medical consequences and alcohol use in 
pregnant women induces congenital defects, learning 
disabilities and other disorders.
    NIAAA-funded research spans a broad range of important 
questions in the role of genetic factors in this disorder to 
promising new treatments like Naltrexone, a medication that 
helps alcoholics by reducing both their craving for alcohol and 
the euphoria associated with alcohol intoxication.
    For fiscal year 1999, the APA recommends that the research 
budgets of NIMH, NIDA and NIAAA be increased to levels 
commensurate with the quality of science being supported by 
these institutes, including $970 million for NIMH, $720 million 
for NIDA, and $283 million for NIAAA. These recommendations are 
inclusive of funds to be appropriated for AIDS-related research 
and are based on the expert analysis of the scientific 
opportunities that can be pursued at each institute to ensure 
future progress in our understanding and treatment of these 
disorders.
    Finally, as we all know, research advances mean little 
unless those who are ill receive appropriate treatment. In this 
context, the Congress has called upon the Center for Mental 
Health Services to exert vigorous Federal leadership in mental 
health service delivery and policy development. In some States, 
SAMHSA-funded treatment services constitute almost 40 percent 
of community based mental health care.
    For fiscal year 1999, the APA recommends a funding level of 
$635 million for CMHS. Included in this number is $30 million 
to support a new investment which we believe would support the 
committee's goal of making community mental health services 
more accountable and more cost effective. States need to 
develop the capacity to collect, analyze and report performance 
data for the services provided to your constituency.
    We urge the subcommittee to appropriate this money to help 
States develop and implement a data gathering system to 
accomplish this goal, and to incorporate the use of practice 
guidelines and measures of treatment outcome as an integral 
part of service delivery. We stand ready to work with CMHS and 
the States to improve the effectiveness of these programs.
    In conclusion, the APA applauds your leadership in 
providing support for research and treatment of patients with 
mental illness and addictive disorders. These are dollars that 
are well spent. It will help translate the promise of 
scientific discovery into improved lives for millions of 
Americans.
    I thank the committee for the opportunity to testify today.
    [The prepared statement of Steven Mirin, M.D., follows:]


[Pages 968 - 994--The official Committee record contains additional material here.]



    Mr. Porter. Dr. Mirin, thank you very much for your 
testimony.
    Let me remind witnesses that the attention span of members 
of the subcommittee is exactly five minutes. You lose us after 
five, including questions, I might add. We have a long, long 
day ahead of us, and we would ask witnesses to stay within 
their time limits.
                              ----------                              

                                         Tuesday, February 3, 1998.

                                WITNESS

QUINCY ABBOTT, THE ARC OF THE UNITED STATES
    Mr. Porter. Our next witness is Quincy Abbott, President of 
The Arc of the United States, representing The Arc, a National 
Organization on Mental Retardation.
    Mr. Abbott. Chairman Porter, members of the committee, The 
Arc is the National Organization on Mental Retardation, with 
over 1,000 chapters throughout the country and 140,000 members. 
I am from Connecticut, and I'm pleased to be its president this 
year.
    Mental retardation is a condition that affects about 7 
million of our citizens. A hundred thousand people are born 
each year with mental retardation. It cuts across racial, 
educational, social, religious and economic backgrounds. The 
Federal Government does have a role, and a proud role, in 
serving our people with mental retardation. From early 
intervention through special education through vocational 
rehabilitation, health services, long term services and 
supports and housing supports, and prevention of future people 
with mental retardation.
    We have a tragic condition in the United States today. 
There are over 250,000 people throughout the country waiting 
for services in the community. A copy of our report that 
details this by State is with my submitted comments.
    There are over 50,000 waiting for placements in the 
community from institutions, nearly 90,000 living at home 
waiting for residential services. And our data probably under-
reports. Many of these families are in desperate, desperate 
condition. I think back to when my daughter was young. She is 
now 34, and I'm real proud of what she has accomplished, living 
in the community.
    I'm ashamed of what I had to do to her when she was four 
and a half and living at home, and there was no family support. 
She was a hellion on wheels. Somebody had to be with her every 
minute of the day. The only relief was when you put her, at age 
four, I guess you could call it a cage and not a playpen.
    Her psychologist and my wife's psychiatrist agreed that we 
either had to have supports in the home or put her in an 
institution. At that time, I did not have the money to pay for 
supports in the home. There was no family support program. At 
four and a half, she became the youngest person to enter an 
institution in the State of Connecticut.
    During the next few years, she was over-medicated and 
under-served. I remember in particular her loss of the few 
words that she knew, like Daddy. Well, family support can 
provide assistance to families like mine today. The respite 
services they need, so the mother can go out and do shopping, 
or the parents can go out to a movie, it provides only what's 
necessary. It can save a tremendous amount over the option of 
institutional costs. Institutions average $75,000 a year in our 
country, and $5,000 or $10,000 can go an awful long way toward 
helping a family with family support.
    The respite, doing household chores, parent training, 
especially with newborn infants, property repair. There are 
families that have used their support payments to repair the 
house once a year from the damage that's been done by their 
child, but they still want to keep the child at home. And 
vouchers for special purposes, special equipment, that sort of 
thing.
    Family support has been authorized for a number of years, 
but it has never been funded. This year, we're happy that the 
President's budget contains $5 million to start a Federal 
funding of family support. We are asking this committee to 
appropriate $10 million to the States to allow all States to 
participate in this sort of program.
    A very small investment in a family, while the child is 
young, can reap tremendous benefits down the line. It can 
enable the child to lead a productive life, as he or she grows 
up, to become a tax paying citizen and to be off the relief 
rolls to a large extent.
    But the cost savings aren't what's important, it's keeping 
the family together when the family wants to stay together. 
That's the important thing.
    I thank your committee for its past support, and I hope for 
your future support.
    [The prepared statement of Quincy Abbott follows:]


[Pages 997 - 1003--The official Committee record contains additional material here.]



    Mr. Porter. Mr. Abbott, thank you for your testimony.
    Can you tell us when the program was originally authorized?
    Mr. Abbott. It was authorized, I think, four years ago, in 
1994.
    Mr. Porter. But there's been no funding?
    Mr. Abbott. Yes.
    Mr. Porter. Okay. We'll do the best that we can.
                              ----------                              

                                         Tuesday, February 3, 1998.

                                WITNESS

LYNDA JOHNSON ROBB
WILLIAM E. TRUEHEART, READING IS FUNDAMENTAL, INC.
    Mr. Porter. Our next witness is Lynda Johnson Robb, 
Chairman of the Board, Reading is Fundamental, Inc., 
accompanied by Dr. William E. Trueheart, President of the 
Corporation, testifying in its behalf.
    Lynda, it's nice to see you again. I want to say that 
obviously, we count you as one of our celebrities who come to 
visit our subcommittee. But you're more than that. You're 
committed to this program, you work on it. You personally put 
your time and effort into it, not just to come to testify, but 
to be there and be a part of it. We very much admire that 
commitment, and thank you for being with us.
    Dr. Trueheart, welcome.
    Mr. Porter. Mr. Hoyer.
    Mr. Hoyer. I'd like to say a word of welcome. Obviously, 
I've known Lynda for a very long time. She was a mere child 
when I first met her.
    But I made this comment, as you have made this comment in 
the past. There are some people who are celebrities in many 
ways. Lynda of course is from a family who has given 
extraordinarily of themselves, her father, of course a great 
leader in making sure that we did not forget people who were in 
need in America. He himself had experienced a life, an early 
life not of wealth, and knew that there were struggles out 
there. He reached out to people.
    The war on poverty has been scoffed at some, I 
think,frankly it was more that we gave up in some respects than we were 
defeated by poverty. It was a statement, however, that the richest 
Nation on the face of the earth knew it had a moral and intellectual 
responsibility to make sure that every American was given the 
opportunity that is America's promise.
    Lynda and her husband have pursued that life of service and 
of commitment. Lynda, I want to congratulate you. There is 
never a year that goes by that I don't, Doctor, have a long 
conversation with Lynda, so I know exactly what I'm supposed to 
do, when I'm supposed to do it and who I'm supposed to talk to. 
Lynda is a very able advocate, Dr. Trueheart, as I'm sure you 
know. You will find her a great partner in this effort.
    Thank you, Mr. Chairman.
    Mr. Porter. Thank you, Mr. Hoyer.
    Ms. Robb. Thank you, Mr. Chairman, for your kind words. I 
have been a volunteer for over 30 years for Reading is 
Fundamental.
    We appreciate the opportunity to testify today. We operate 
the inexpensive book distribution program under a contract with 
the Department of Education. I request that our testimony be 
put in the record.
    RIF does not replace trained reading teachers. Instead, we 
motivate children to read and to make sure that they have books 
to call their own. We have programs in every State, and our 
225,000 grass roots volunteers are one of the largest groups of 
non-political volunteers in the United States.
    We recently received an A plus rating as one of the ten 
most effective charities in the country from the American 
Institute of Philanthropy. For every Federal dollar invested, 
RIF programs leverage more than $5 in private support.
    RIF works in partnership with the Federal Government, and I 
sincerely believe that we are one of the Government's best 
investments. Locally, RIF projects receive Federal money only 
for books, not for other costs. For every member of RIF's lean 
staff, 57,000 children are served.
    Local groups made up of teachers, parents and other 
volunteers make all the key decisions. Working together, we 
reached 3.3 million children in 1997 with our book distribution 
program. These 4,000 local RIF programs are sponsored by every 
group imaginable, from churches to Kiwanas to the Maryland 
Federation of Republican Women.
    Now, let me introduce our new President, Dr. Bill 
Trueheart.
    Mr. Trueheart. Thank you, Mr. Chairman, and thank you, Ms. 
Robb.
    I'm honored to be here today as the new President of 
Reading is Fundamental. The need for intervention to improve 
children's literacy is urgent and growing throughout our 
Nation. The demand for our services requires us to serve 
increasing numbers of children.
    That is why we're here today. Reading is Fundamental 
respectfully requests a fiscal year 1999 Federal appropriation 
of $18.3 million for the inexpensive book distribution program.
    In 1996, the U.S. Department of Education estimated that 
approximately 6.4 million children in grades kindergarten to 
third were in danger of becoming illiterate. The evidence on 
the likelihood of increasing rates of illiteracy for our 
neediest children is very, very compelling.
    I believe that we cannot let another generation of children 
grow up without the essential tools to become literate 
citizens.
    In 1993, 1994 and 1995, Congress required Reading is 
Fundamental to send out a call for applications to test the 
demand for RIF's services. The response was overwhelming. More 
than 2,000 local volunteer groups from every State applied, 
eager to serve approximately 1.3 million children, 85 percent 
of whom were low-income, without access to libraries, received 
free or reduced lunch, and were at risk of educational failure.
    These children, because they had to be placed on the 
Reading is Fundamental waiting list, remain there to this day, 
because we were unable to secure sufficient funds to serve 
these additional children, despite persistent efforts to raise 
private funds. The inexpensive book distribution program has 
been level funded since 1994 at $10.3 million.
    Unable to fulfill the needs of this enormous waiting list, 
RIF stopped requesting applications for participation in the 
inexpensive book distribution program. Although requests for 
help continue from every corner of this country.
    Had we continued to request applications, we estimate that 
our waiting list for these literacy services would total at 
least 4,000 additional volunteer grass roots groups prepared to 
serve more than 2.6 million additional children.
    As the new President of Reading is Fundamental, I was 
saddened to learn that Congress had requested solicitation of 
applications for the inexpensive book distribution program but 
was unable to fully respond to the demand thus created. At 
present Federal funding levels, RIF cannot meet the demand of 
local educators, parents and community leaders who recognize 
the demonstrated value of RIF's reading programs, and who want 
those vital services for their children.
    Although RIF received an increase in fiscal year 1998, for 
which we are very grateful, that $12 million appropriation will 
serve only an additional 300,000 children. A million more will 
remain on the waiting list unless Congress takes action now.
    For a Federal investment of $3.07 per child, RIF's 
partnership with the Federal Government can provide new books, 
reading programs and assistance to parents and volunteers who 
are committed to a literate future for our neediest children. 
In making this request for increased funding, we are not asking 
the Federal Government to bear the responsibility alone. RIF 
allocates funds only to local groups who meet stringent 
criteria demonstrating that they are unable to operate without 
Federal assistance to provide books to the children in these 
communities.
    Mr. Chairman, I understand that I've run over, so I will 
move to my conclusion. I believe it would be unfortunate to 
deny yet another generation of the Nation's neediest children 
access to proven effective and fundamental reading readiness 
and motivational programs, when our Nation has the human and 
financial to eradicate illiteracy now.
    At a minimum, we ask you to provide additional funding to 
eradicate the longstanding waiting list generated at Congress' 
request so that literacy services can be provided as soon as 
possible to those 1 million educationally at-risk children.
    Thank you for your past support, and I respectfully urge 
your continued and increased support for Reading is Fundamental 
and the inexpensive book distribution program.
    [The prepared statement of Lynda Johnson follows:]


[Pages 1007 - 1012--The official Committee record contains additional material here.]



    Mr. Porter. Dr. Trueheart, give me your funding level again 
that you're suggesting.
    Mr. Trueheart. It's $18.3 million, sir.
    Mr. Porter. We appreciate very much your testimony this 
morning. I got an education back in 1995 when this subcommittee 
was required to make so many budgetary cuts in order to meet 
our deficit reduction guidelines. I heard from a lot of people.
    You're right, there's 225,000 out there, I think, because 
we might have heard from all of them. [Laughter.]
    I'm not so sure they're not political. But in any case, I 
learned a lot about the program that I did not know before. I 
really did learn a lot about the program and have learned to 
value it, perhaps much more highly than I did previously. We 
appreciate your coming here today to further educate us. We're 
going to do the best we can to provide you the resources that 
you need to get the job done.
    Thank you.
    Ms. Robb. Thank you.
    Mr. Trueheart. Thank you very much.
    [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.]
                              ----------                              

                                         Tuesday, February 3, 1998.

                                WITNESS

SUSAN JOHNSON
JOSEPH McNULTY, HELEN KELLER NATIONAL CENTER FOR DEAF-BLIND YOUTHS AND 
    ADULTS
    Mr. Porter. Sue Johnson, parent of a deaf-blind young man, 
accompanied by Mr. Joseph McNulty, Director, Helen Keller 
National Center for Deaf-Blind Youths and Adults testifying in 
behalf of the Center.
    Ms. Johnson and Mr. McNulty.
    Mr. McNulty. Thank you, Mr. Chairman. We appreciate the 
opportunity to testify.
    The Center is seeking an additional $1 million in our 
fiscal year 1999 appropriation. Speaking on behalf of the 
Center this morning is Ms. Susan Johnson.
    Ms. Johnson. It's an honor and a pleasure to be here to 
talk to you this morning. I'm the parent of a 21 year old deaf-
blind child who has been making his way through the system for 
the past 21 years. As he has, and as we've tried to raise him, 
Helen Keller National Center has been our one and only support 
system through that process.
    When Jake was 16 years old, he began to experience extreme 
difficulty in every point of his life. The public school system 
could no longer serve him, and he was placed in an institution 
at the cost of $70,000 a year.
    During those 18 months that Jake was in an institution, it 
was the hardest time in our lives that we had ever faced with 
Jake. I began to call Helen Keller National Center over and 
over and over. They began to help me through the process of 
getting Jake out of an institution and to Helen Keller National 
Center to be reevaluated and retrained and try to get him back 
in our family and in our society.
    We're happy to say that Jake is now 21. After spending 20 
months at Helen Keller National Center, he is living in a home 
of his own and working at Olive Garden five days a week rolling 
silverware. We're incredibly proud of him and very, very 
thankful for the work and the commitment that Helen Keller 
National Center made to our family and other people like Jake, 
who are born without vision and hearing.
    Throughout the rest of Jake's life, we expect that Helen 
Keller National Center will be a part of our life. It's the 
only resource for deaf-blind people in this United States. 
There are 11,000 deaf-blind children throughout the United 
States, and Helen Keller National Center is their resource and 
their families' only place to turn for help and education.
    As Joe said, they are asking for another $1 million in 
funding this year. And that will be to serve people like Jake 
who have graduated from Helen Keller, who are making it in the 
society. But as his life goes on, he has hurdles. Our only 
place to go is to them for help and support.
    We hope that you will look very seriously at this request 
and grant it for us.
    [The prepared statement of Susan Johnson follows:]


[Pages 1015 - 1020--The official Committee record contains additional material here.]



    Mr. Porter. You're not going to say anything?
    Mr. McNulty. Not at all.
    Mr. Porter. You don't need to after that presentation.
    Mr. McNulty. That's right.
    Mr. Porter. We really appreciate it, Ms. Johnson. You 
couldn't have stated the case better, and obviously we're going 
to do the very best we can to accede to that request.
    Ms. Johnson. Please look closely.
    Mr. Porter. Mr. Hoyer.
    Mr. Hoyer. I should know the answer to this question. 
Where's the Helen Keller Center located?
    Mr. McNulty. The headquarters is located up in New York, on 
Long Island. We operate 10 regional offices, and we have 
affiliations with 44 State and local agencies throughout the 
country.
    Mr. Hoyer. You're from New York, did you access it that 
way?
    Ms. Johnson. Actually, we're from about everywhere, because 
my husband's in baseball. We're in a bunch of different States. 
But we're actually, our home is in Florida, and then Jake 
actually went to Long Island and lived there for 20 months and 
lived on their campus.
    Mr. Hoyer. Your husband's in baseball?
    Ms. Johnson. Yes, sir. My husband's David Johnson that used 
to be with the Orioles.
    Mr. Hoyer. Who did he play for? [Laughter.]
    We're glad to have you here, and it's nice that you brought 
him along.
    Ms. Johnson. I'm glad he came with me.
    Mr. Porter. Thank you very much, Ms. Johnson.
    Mr. Hoyer. Obviously, Jake has two great parents. That's an 
important aspect in his life.
    [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.]
                              ----------                              

                                         Tuesday, February 3, 1998.

                                WITNESS

JOHN S. GUSTAFSON, NATIONAL ASSOCIATION OF STATE ALCOHOL AND DRUG ABUSE 
    DIRECTORS, INC.
    Mr. Porter. John S. Gustafson, Executive Director of the 
National Association of State Alcohol and Drug Abuse Directors, 
Inc., testifying in behalf of the Association.
    Mr. Gustafson. Good morning, Mr. Chairman and members of 
the subcommittee.
    Mr. Porter. Good morning.
    Mr. Gustafson. Thank you for the opportunity to testify 
before you today, and to make our recommendations for the 
increased investment in alcohol and other drug prevention 
treatment and research services.
    Specifically, we are supporting a 15 percent increase of 
$254 million to the Substance Abuse block grant that is 
currently funded at $1.36 billion. The funding level of $1.36 
billion includes the two year transfer of $50 million 
appropriated to provide treatment services to the former 
recipients of SSI and SSDI. Although the legislative authority 
for this additional $50 million was only for 1997 and 1998, we 
are urging that this level of funding be maintained based on 
the need for treatment.
    We also are supportive of funding increases for the 
knowledge development and application programs within the 
Centers for Substance Abuse Treatment and Centers for Substance 
Abuse Prevention as well as the Safe and Drug Free Schools 
Program and the research budgets for NIDA and NIAAA.
    In supporting these increases, Mr. Chairman, we emphasize 
the need for new and stronger linkages between these Federal 
programs and the substance abuse block grant that is the 
primary commitment of Federal resources for prevention and 
treatment in partnership with the States. Our national 
association represents the concerns of State alcohol and drug 
abuse directors who administer and fund prevention and 
treatment programs to a network of some 7,000 community based 
not for profit organizations.
    I would like to discuss briefly three issues with you 
today. First of all, welfare reform and the need for treatment. 
It is estimated that over one million welfare mothers have 
substance abuse problems that require treatment. As welfare 
reform is implemented, States are under pressure to find the 
resources needed to provide treatment services to get these 
mothers back to work.
    There are now long waiting lists for treatment. Without new 
resources, it will be difficult for moms receiving temporary 
assistance for needy families, TANF, and others in need to 
receive appropriate treatment.
    Secondly, prevention. Prevention of alcohol and other drug 
problems in our youth remains a very high priority. As a 
Nation, we continue to be alarmed by the number of youth who 
are initiating alcohol and drug abuse. The Office of National 
Drug Control Policy, ONDCP, has begun its media campaign in 
earnest. Now it is up to the States to providethe prevention 
and treatment resources that can logically be expected as a result of 
that campaign.
    Mr. Chairman, our country's substance abuse problem is 
enormous. Over 13 million Americans use illicit drugs. Nine 
million youth under the age of 21 consume alcohol. Of these, 
4.4 million are binge drinkers, including 1.9 million heavy 
drinkers.
    On an annual basis, the publicly supported State alcohol 
and drug abuse system administers about $4 billion of substance 
abuse services annually. States spend over $583 million per 
year on prevention services. About 1.9 million treatment 
admissions comes into that system every year.
    Every year, we conduct a waiting list of our members to 
determine the need for treatment, and included in the written 
testimony is a state by state breakdown for members of this 
committee as to how those waiting lists play out.
    NASADAD is well aware of how important our treatment system 
is to getting TANF moms and others back to work. We have been 
working closely with the Department of Labor and the private 
industry councils to help ensure the success of the two-year 
welfare to work program. One thing that is clear to all of us, 
State administrators, providers of services, employers and 
welfare experts, and that is that the long waiting lists for 
treatment are a barrier for getting these moms back to work.
    It is also clear that unless TANF recipients get the 
treatment they need, job retention will be a major problem for 
families, States and employers.
    Now, if we're successful in convincing members of the 
Congress to make these additional appropriations, let me just 
highlight very briefly some of the services that States would 
be prepared to engage in. First and foremost, reduce the number 
of people on current waiting lists. Develop new services for 
women TANF recipients, such as weekends or evening treatment 
programs, and lunch prevention education programs. Establish 
employee assistance programs for those that hire welfare 
recipients. Create new mentoring programs that engage business 
leaders in reaching out to youth to build esteem and life 
skills, as well as avoid substance abuse.
    Quite often at these hearings, we are asked to speak to the 
treatment effectiveness issue. I would commend to the 
committee's recommendation two very recent studies, one 
conducted by the National Institute on Drug Abuse entitled the 
Drug Abuse Treatment Outcome Study and the second by SAMHSA, 
Substance Abuse and Mental Health Services Administration, the 
National Treatment Improvement Evaluation study. Both are long 
term, longitudinal studies that point to the clear benefit of 
treatment in terms of reducing illicit drug use, increased 
productivity and reducing illegal behavior.
    I want to conclude, Mr. Chairman, with reference to an 
issue that's been somewhat contentious, both on the 
authorization side and certainly on appropriations. That is the 
formula that forms the basis for delivering the block grant 
monies to the States. Our membership takes very seriously the 
admonition from the appropriators last year to try to come to 
agreement and consensus on how to best distribute these funds.
    We have recently convened a meeting of our members and 
compiled a set of recommendations that is being embedded 
throughout the entire State membership. One of the major issues 
we want to avoid is the serious disruption that is created by a 
dramatic shift in the formula indices from one year to another. 
As I mentioned, most of these providers are local not for 
profits. When you have one State move in a positive direction 
of 20 percent and another State in the opposite direction, it 
creates massive disruptions of services, and actually throws 
people out of treatment.
    My written testimony provides detailed recommendations as 
to how we would like the formula to be considered. We are 
working hand in glove with the authorizers to make our 
recommendations known.
    Thank you very much for the opportunity to testify, and I 
look forward to responding to any questions that you may have.
    [The prepared statement of John S. Gustafson follows:]


[Pages 1024 - 1039--The official Committee record contains additional material here.]



    Mr. Porter. Mr. Gustafson, tell me again what increase 
you're recommending and on what base.
    Mr. Gustafson. On the base of $1.36 billion for the current 
block, we are recommending an increase of $254 million.
    Mr. Porter. And what percentage would that be, do you know?
    Mr. Gustafson. Approximately 15 percent, Mr. Chairman.
    Mr. Porter. All right. Thank you very much for your 
testimony, Mr. Gustafson.
    Mr. Gustafson. Thank you, sir.
                              ----------                              

                                         Tuesday, February 3, 1998.

                                WITNESS

ADA SUE HINSHAW, AMERICAN ASSOCIATION OF COLLEGES OF NURSING
    Mr. Porter. Our next witness is Ada Sue Hinshaw, Ph.D., 
R.N., Dean of the School of Nursing at the University of 
Michigan in Ann Arbor, Michigan, testifying in behalf of the 
American Association of Colleges of Nursing.
    Ms. Hinshaw, it's nice to see you again.
    Ms. Hinshaw. Thank you. It is nice to again be in front of 
the committee and have an opportunity to let you know about the 
issues and concerns for the American Association of the College 
of Nursing.
    In addition to the introduction as Dean of the School of 
Nursing at the University of Michigan in Ann Arbor, I do want 
to clarify that I was the Director of the National Institute 
for Nursing Research for seven years. That's important in light 
of my testimony, so I want to be sure you know where my biases 
stand early, and very fast.
    For fiscal year 1999, AACN is recommending a 100 percent 
increase for NINR over the 1998 budget to $127 million. For 
AACPR, we are asking for an increase of 10 percent to slightly 
over $161 million.
    For the Nurse Education Act, we are requesting an increase 
of 8 percent over 1998 to a level of $70.9 million. For the 
scholarships for disadvantaged students, we seek an increase of 
8 percent over the 1998 level to $20.235 million.
    Now what I'd like to do is primarily speak to our very 
strong recommendation for the NINR. There are three reasons 
that we are really pursuing a doubling of the resources to this 
particular institute at NIH.
    As unusual as this is, at this point, NINR is literally 
fighting success in terms of its research programs and its 
research training programs. It's a good phenomenon in the sense 
of the kinds of research that is being produced, the number of 
researchers who are now engaged in very exciting projects 
around promoting health, around increasing the care of the 
chronically ill individuals, of providing increased care for 
the acute nature of the hospitals that we are currently working 
in. And also looking at the health care systems themselves as 
they impact the client and the patient incomes in terms of 
quality and cost.
    All of these kinds of research programs are parallel and 
very complementary with the biomedical research mission.
    Secondly, nursing science has now advanced rapidly to the 
point in which we are conducting a number of clinical 
intervention studies. Intervention studies are more intensive 
in terms of resources. They take a longer number of years to 
conduct. Therefore, the amount of resources which need to be 
invested in any one research study over a period of time is 
much greater than it was earlier in the past 12 years, a decade 
ago, rather, when the institute began.
    The research training needs for nursing are also stillquite 
high. And there is a drain of nursing faculty, as there are many of our 
people in the country. And there's going to need to be a change, a new 
cadre of individuals who are brought along and allowed and helped to 
mature over this time.
    I would like to also suggest that we look at the fact that 
the NINR has the smallest funding level of any institute in 
most of the centers at the NIH. Literally, the funding base is 
less than one-third of the next closest institute. Even 
doubling, or requesting a doubling of the money to $127 
million, the next institute is over $200 million in terms of 
support.
    But that is not really the reason for why we need to really 
look at increasing the resources for this particular institute. 
The reasons are the differences that the research is beginning 
to make. For example, the nursing research focuses heavily on 
cultural relevant kinds of health care, providing recently a 
new study at UCSF Arthritis Center in California in which it is 
clear that now Spanish speaking language programs for our 
people with arthritis are now available to Spanish populations 
in that area. Community outreach, classroom education, etc.
    Another example is that today's shorter hospital stays save 
money, but quite frankly, they mean that patients go home 
sicker at discharge and they need more support at home. So the 
studies that NINR have funded, an entire series of them that 
look at comprehensive discharge planning, and then follow-up in 
the community by advanced practice nurses, have allowed in a 
series of about four to five populations now for a savings of 
health care in general between 27 and 37 percent per case.
    So these are very important and very exciting studies. They 
are tracking both quality of care and cost of care.
    A third study that is very important, is going to be making 
a difference, is that different types and intensities of pain 
trouble patients and quite frankly, challenge caregivers a 
great deal, such as nurses. An NINR-funded research study has 
discovered that for women in particular, a type of pain 
medication, kappaopioids, more effectively reduces high levels 
of intense pain than morphine drugs and has fewer negative side 
effects.
    This study as well will now be replicated and followed up 
on as an exciting area of research having to do with symptom 
management.
    Essentially, I would simply like to speak for a few 
minutes, for a few seconds, excuse me, I heard the buzz, to the 
Nurse Education Act as a key source of Federal financial 
support for nursing education programs and nursing students. We 
are seeking an 8 percent increase for the NEA for this coming 
year.
    I thank you and would entertain questions.
    [The prepared statement of Ada Sue Hinshaw follows:]


[Pages 1043 - 1050--The official Committee record contains additional material here.]



    Mr. Porter. Dr. Hinshaw, thank you very much for 
testifying. I might say to you and to all the witnesses that as 
I sit here and listen to the very compelling testimony, I think 
that it is probable, with the kinds of increases in each of the 
areas that are being requested, are probably a year off in 
reality. And that we have to continue to see the kind of 
economic growth that we've seen recently continue in order to 
achieve them.
    I want to assure all of you that we will do the best we can 
within the resources we have to meet the needs that are very 
obvious, and all of our witnesses have mentioned in a number of 
different areas. I think probably it's going to be a little 
longer time than all of us would want, and dependent upon a 
strong economy.
    I think eventually we will get there, and probably sooner 
rather than later. Thank you for your testimony, we appreciate 
it very, very much.
    Ms. Hinshaw. Certainly. Thank you for your consideration.
                              ----------                              

                                         Tuesday, February 3, 1998.

                                WITNESS

EILEEN BREWER, M.D., AMERICAN SOCIETY OF PEDIATRIC NEPHROLOGY
    Mr. Porter. Eileen Brewer, M.D., President, American 
Society of Pediatric Nephrology, testifying in behalf of the 
Society.
    Dr. Brewer. Chairman Porter and members of the 
subcommittee, I'm the current President of the American Society 
of Pediatric Nephrology. In my other life, I'm a faculty member 
of Baylor College of Medicine and Chief of the Renal Service at 
Texas Children's Hospital in Houston, Texas. I see patients 
every day, and all of them are infants, children and teenagers 
with kidney disease.
    By way of background, the American Society of Pediatric 
Nephrology, or the ASPN, is a non-profit organization that was 
founded in 1969 to serve as an advocate for the estimate 
150,000 children with kidney disease in this country. About 
10,000 of these young citizens are already on dialysis, have a 
kidney transplant or have chronic renal failure that will lead 
to those modalities.
    ASPN represents over 90 percent of the physicians devoted 
to caring for these children with kidney diseases. One of our 
principal missions is to promote research that we hope will one 
day lead to the eradication of these diseases that ravage the 
lives of this most vulnerable segment of our population.
    The ASPN participates with the American Society of 
Nephrology, the National Kidney Foundation, the American 
Society of Transplant Physicians and the Renal Physicians 
Association and the Council of the American Kidney Societies. 
We as a group support research funding to help all of the 
Americans that are suffering from kidney disease.
    Mr. Chairman, I do want to take this opportunity to thank 
you and the members of the subcommittee for the leadership 
you've demonstrated in the past. Because of the support lent by 
you and members of this committee and your predecessors, this 
Nation has certainly built a remarkable health record. That 
progress has had a dramatic impact on the care of children with 
renal disease as well.
    For example, the hereditary disease, cystinosis, which is a 
metabolic disorder that affects the kidneys, the eyes and the 
pancreas, can now be treated so as to delay or prevent the 
worst effects on children. Currently there are two studies in 
progress, major clinical research studies to find ways to 
prevent and treat the devastating consequences of two kidney 
diseases that are particularly common in childhood and 
adolescence. Those are the hemolytic uremic syndrome and IGA 
nephropathy.
    There have also been remarkable strides in prolonging and 
improving the lives of children with end stage kidney disease. 
Kidney transplants now have a better success rate, and even 
those children and teenagers who remain on dialysis have fewer 
hospitalizations and they lead a better quality of life.
    But each advance enables us to concentrate more on the 
remaining challenges. About one-third of the children who now 
have end stage kidney disease were born with congenital renal 
anomalies. These anomalies prevented the normal formation of or 
destroyed their kidneys.
    We currently do not know enough about basic renal 
development to aid us in preventing or slowing the progression 
of renal failure for these children, even if we diagnose their 
condition before birth. In addition, for each one million 
children in the United States, 50,000 will develop urinary 
tract infections which can damage developing renal tissue and 
lead to permanent scars in the kidney.
    About 40,000 more children will require evaluation for 
hematuria and proteinuria, which are signs of progressive 
kidney disease. Another 50,000 children will be diagnosed with 
hypertension that can cause renal failure in adulthood. And an 
additional 5,000 children will develop diabetes, and 2,000 of 
these will require dialysis or kidney transplant in late 
childhood or adulthood.
    We must do more to identify and treat chronic kidney 
disease in its earlier stages in childhood and adolescence to 
prevent end stage renal disease in later life. In this regard, 
we support the National Kidney Foundation's initiative to 
evaluate proteinuria as an early sign ofprogressive kidney 
disease.
    While we've seen progress on several fronts, much remains 
to be done. When chronic kidney failure occurs in infancy and 
childhood, normal growth and development are impaired due to a 
variety of factors which include altered nutrition, impaired 
bone formation, and resistance to normal growth factors like 
growth hormone.
    While many advances have already been made, including the 
discovery that treatment with supplemental growth hormone 
increases growth, most children with chronic renal failure do 
not obtain the normal adult height. In addition, the effects of 
kidney failure on the developing brain are very poorly 
understood. Learning disabilities and mental retardation may be 
consequences of kidney failure in infancy and early childhood.
    More research is needed to better treat and prevent the 
adverse effects of chronic kidney failure on growth and 
development in pediatric patients.
    Kidney transplantation still remains the therapeutic choice 
for children with end stage renal disease. Unfortunately, 
studies show that the improvements we have seen in transplant 
survival among adults have not been realized in our pediatric 
patients. We scientists attribute this to many factors, but the 
most important appears to be the child's own immune system, 
which seems to be more inclined to reject the transplanted 
kidney.
    If we don't do something to find better survival of 
transplanted kidneys, about half of all children receiving 
transplants over the next five years will be back on dialysis 
by the end of the decade.
    We want to commend this subcommittee for asking the NIDDK 
to develop an interagency plan for adult and pediatric kidney 
disease, because we feel it is especially important to 
distinguish between adult and pediatric research. We support 
the ad hoc group for medical research funding, which calls for 
a 15 percent increase in funding for the NIH in fiscal year 
1999. We also would recommend that this subcommittee allocate 
$3 million to the NIH for research on the unique needs, 
including the immunosuppressive needs, of children and 
adolescents suffering from diseases that lead to chronic kidney 
failure.
    Thank you, Mr. Chairman.
    [The prepared statement of Eileen Brewer, M.D., follows:]


[Pages 1054 - 1064--The official Committee record contains additional material here.]



    Mr. Porter. Dr. Brewer, thank you very much for your 
testimony. We apologize to you and all of our witnesses for the 
tyranny of the bell. Unfortunately, there's so many people that 
want to testify that we have to limit testimony to five 
minutes. For that we very much apologize. Thank you for coming 
to testify this morning.
    The Chair would ask Mr. Bonilla to chair.
                              ----------                              

                                         Tuesday, February 3, 1998.

                                 WITNESS

RACHEL GONZALES, NATIONAL ASSOCIATION OF COMMUNITY HEALTH CENTERS
    Mr. Bonilla [assuming chair]. Thank you, Mr. Chairman.
    The Chair would like to call Rachel Gonzales, Chairperson 
of the National Association of Community Health Centers.
    Before Ms. Gonzales begins, I'd like to point out to my 
colleagues on the subcommittee and to those who are here with 
us today that Rachel is an example of what it means to truly be 
a community public servant. When you began your career as a 
secretary in the clinic 13 years ago, we recall it was housed 
in a trailer, you had only two exam rooms.
    Then you worked your way to the top and the clinic also 
grew under your guidance. Before too long, you were moved to 
the current location, which was once a hospital storage 
facility, and have since created three additional sites where 
patients can come to receive care that are aside from the 
current location.
    Today through your perseverance and under your guidance, 
commitment and dedication, as a CEO of the clinic, I was proud 
to be at the ground breaking ceremony just recently that will 
eventually house on that site a facility that's five times the 
size of its current location to accommodate the increase in 
demand for your quality service that you now have in Uvalde 
County.
    You are a great inspiration for a lot of folks out there, 
young people who look to someone like yourself and say, gosh, 
here's somebody who not only can rise to the top in a very 
brief period of time, and that's one thing, but leave behind 
all of the great care that your clinic has provided over the 
years is even more important. Because all of the families that 
are affected and the people who come in have no place else to 
go. You made a difference in their lives and I thought I should 
point that out before you begin your testimony this morning.
    Thank you for being here.
    Ms. Gonzales. Thank you, Congressman, very much.
    Good morning. I appear on behalf of the National 
Association of Community Health Centers in support of increased 
funding for 1999 for the Consolidated Health Center program. 
Health centers provide quality, cost-effective health care to 
patients in urban and rural medically under-served areas. It is 
for this mission that we ask the subcommittee's continued 
strong support.
    A written statement has been submitted, so I will only 
summarize and underscore a few of the pressing issues that face 
all health centers. First, I want to thank the subcommittee for 
strengthening the health center program over the last two 
years. Under the leadership of Chairman Porter, appropriations 
for the program have increased by $68 million in a period when 
the subcommittee had to make difficult choices.
    We are particularly grateful to Congressmen Henry Bonilla 
and Jay Dickey for their efforts on our behalf. These new funds 
are making services available to many more uninsured patients 
through the establishment of new health center sites in 
previously unserved areas.
    However, there is more work to be done. Most existing 
health centers have not seen an increase in their grant dollars 
for the past eight years. Yet, nearly all are inundated with 
escalating numbers of uninsured people, over one million in the 
past three years.
    Health center revenues from other sources, especially 
Medicaid, are declining as managed care increases. These 
centers need additional support to meet the growing needs in 
our communities.
    I'd like to tell you about our health center and the unmet 
needs of our community. Our agency is a rural community and 
migrant health center located 80 miles southwest of San 
Antonio, Texas. Services are provided from two health center 
sites, one in Uvalde and one in Leakey, serving Real and 
Edwards County.
    The total population of the three counties is approximately 
30,000. More than half of whom are members of low income, 
uninsured families spread across an area that is virtually the 
same size of Connecticut.
    Our agency serves 5,000 people, 58 percent of whom are 
uninsured, and 65 percent are at or below the poverty level. 
Most are Hispanic and many are farm workers.
    The typical elderly patient of our health center suffers 
from at least three serious conditions: diabetes, hypertension 
and congestive heart failure, whose care normally requires 
anywhere from five to ten different prescriptions. The Uvalde 
site, with three full time providers, will serve between 75 and 
90 patients daily, and fill an average of 90 prescriptions 
through our in-house pharmacy. The Leaky site, with one full 
time provider, also has an in-house pharmacy, the only pharmacy 
anywhere in Real and Edwards Counties.
    The needs of our community and its uninsured are growing. 
at the present time, patients calling for appointments must 
wait at least two weeks due to our heavy patient load. We are 
aware of individuals who do not have a family doctor, and when 
they become ill, wait until their condition has worsened before 
they seek attention. Then they go to the emergency room.
    The same situation applies to many pregnant women. There is 
not enough obstetrical care in our area.
    We currently need at least five more full time primary 
health care providers. But it is difficult to recruit, and even 
harder to retain, health care professionals for the trying work 
of practicing medicine in rural areas. Our resources are not 
enough to support primary care, healtheducation, and preventive 
care to all who need it.
    If we could hire these additional providers, we could serve 
4,700 new patients and provide over 19,000 new office visits 
annually.
    Our story is just one of many across the Nation. As Chair 
of NACHC, I am speaking on behalf of over 940 health centers in 
over 3,000 urban and rural communities. Together, these health 
centers care for over 10 million children and adults, one in 
every ten uninsured individual relies on the health center for 
care.
    Our centers are local, non-profit, community owned health 
care programs that are governed by volunteers who take 
responsibility to ensure that responsive and affordable health 
care is provided to all who need it. Patients are charged on a 
sliding fee scale to insure that income or lack of insurance is 
not a barrier to care.
    A host of studies and reports have shown that the health 
centers are one of the most efficient health care providers 
anywhere. Investing in health centers is one of the wisest 
decisions this subcommittee continues to make.
    For example, every $100 million in Federal grant funds 
leverages another $200 million in other resources and helps 
provide care to another one million patients. This creates 
healthy workers and students.
    We provide an economic base in our most financially 
depressed urban and rural communities and create meaningful 
jobs, including new health care professionals.
    An additional Federal investment in health centers would 
ensure the availability of primary and preventive health care 
to the growing numbers of uninsured. Priority should be given 
to strengthening and preserving the existing health center 
infrastructure.
    On behalf of NACHC and the Uvalde County Clinic, I'm asking 
you to please consider our recommended level of $926 million 
for the Consolidated Health Center Program for fiscal year 
1999. This would ensure us being able to serve an additional 
350,000 low income, uninsured individuals.
    Invest in health centers. Build upon what has worked. Look 
at the long history and success of the program, and continue to 
invest in programs that mobilize communities to solve problems 
at the local level.
    Thank you for allowing me to speak today.
    [The prepared statement of Rachel Gonzales follows:]


[Pages 1068 - 1073--The official Committee record contains additional material here.]



    Mr. Bonilla. Thank you, Rachel, for your excellent 
testimony. You know we'll do the best we possibly can on this 
subcommittee to help you.
    Ms. Gonzales. Thank you, Congressman.
    Mr. Porter [resuming chair]. Thank you, Mr. Bonilla.
    We have departed slightly from our order of witnesses at 
Mr. Bonilla's request. We now go back.
                              ----------                              

                                          Tuesday, February 3, 1998

                                WITNESS

DONALD E. WILLIAMSON, M.D., ASSOCIATION OF STATE AND TERRITORIAL HEALTH 
    OFFICIALS
    Mr. Porter. Donald E. Williamson, M.D., State Health 
Officer, Alabama Department of Public Health and President of 
the Association of State and Territorial Health Officials, 
testifying in behalf of the Association.
    Dr. Williamson.
    Dr. Williamson. Thank you, Mr. Chairman.
    I'm here today representing the Association of State and 
Territorial Health Officials, and serve as that Association's 
President. We have the privilege of representing the chief 
health official in each State and territory of the United 
States.
    If you will allow me to begin with our association's fiscal 
year 1999 recommendations for Section 317 immunization program 
funding administered by the Centers for Disease Control, ASTHO 
recommends $539 million for this critical program. This does 
represent a significant increase over fiscal year 1998 funding. 
However, funding over the past several years has been reduced 
from $528 million in fiscal year 1994 to $427 million in the 
current fiscal year.
    ASTHO is particularly concerned about the President's 
budget request of $406 million for fiscal year 1999, and feels 
this is based upon mistaken assumptions about projected 
carryover.
    During fiscal year 1997, States actually spent a total of 
$539 million. A total of $467 million was appropriated in 
fiscal year 1997, but States also used carryover dollars from 
calendar year 1996 to conduct their fiscal year 1997 
immunization activities. This indicates they actually needed 
considerably more funding than was appropriated to achieve the 
national goal of fully immunizing 90 percent of two year olds.
    The latest data on the States' progress provided by the 
Centers for Disease Control show that in 1996, an average of 78 
percent of two year olds were fully immunized compared with an 
estimate of 50 percent in 1993, before significant increases in 
the program occurred. States have made excellent progress in 
achieving our national goal. However, we have not yet arrived.
    The cut in fiscal year 1998 funding comes at a time when 
States are estimated to have reduced their carryover funds for 
calendar year 1997 by two-thirds. In fact, projected estimates 
of carryover funds for 1997 are now likely to be considerably 
below the $60 million assumed last fall.
    In addition, it is our understanding that carryover funds 
are likely to be close to zero for calendar year 1998. The 
fiscal year 1998 cut in funding has resulted in the following. 
First, a median cut of 17 to 18 percent in State and 
territorial immunization infrastructure budgets, state budgets 
for core activities have been funded at only 74.5 percent of 
original estimates negotiated by CDC and the States, and third, 
preliminary reports of ASTHO confirm that States will change 
the way we're conducting our immunization programs.
    Specifically, States are reducing activities, including 
less provider training, reduction in outreach to communities 
and parents, reduction in linkage activities to WIC and welfare 
sites, reduction of administration of shots in local clinics, 
and elimination of reminder and recall activities. From a 
public health perspective, perhaps the most ominous reduction 
is a further reduction in development and implementation of 
immunization registries.
    What the Section 317 immunization program needs for fiscal 
year 1999 is not further cuts, but rather, a significant 
increase to avoid the risk of another emergence of vaccine 
preventable disease, such as measles and whooping cough, which 
provided the original impetus in fiscal year 1994 for the 
national vaccine effort.
    ASTHO also recommends $705 million for Title V Maternal and 
Child Health Block Grant which is the amount authorized by 
Congress to meet the assessed need. Over the past decade, we 
have seen increased demand for MCH program support due to 
increasing numbers of uninsured and underinsured women and 
children. While enactment of the Health Insurance Portability 
and Accountability Act and the Children's Health Insurance 
Program are welcome improvements for many, we arefacing a new 
round of private insurance premium increases which will especially 
impact the working poor.
    MCH programs have not experienced a reduction in demand for 
services, only an increase. And this can be expected to 
continue as long as health insurance is unaffordable for many 
of America's families. MCH programs expect to experience 
increased demand due to the enactment of the Child Health 
Insurance Program, because they are an important link in the 
efforts to locate, assess and refer eligible children for 
expanded Medicaid and private insurance coverage under the 
program, in addition to providing direct medical services.
    Next, ASTHO urges the committee to provide $182 million in 
funding in fiscal year 1999 for the preventive block grant, 
which provides the only flexible funding to States to address 
critical health problems. This amount is the level that States 
have estimated is needed in order to maintain continued 
progress toward meeting the identified Healthy People 2000 
goals.
    This program, which in fiscal year 1995 was funded at $160 
million, has been steadily eroded. Categorical programs are 
appropriate when addressing national health problems, such as 
HIV/AIDS and immunizations. But there are no funds for many 
State and community specific problems except through the 
preventive block grant.
    Finally, ASTHO recommends $90 million for the CDC Office of 
Smoking and Health for fiscal year 1999. The Office of Smoking 
and Health has worked to deglamorize tobacco use among teens 
and to empower youth involvement in tobacco control efforts. 
The program has particularly worked to provide funding to all 
50 States for tobacco control under its IMPACT program.
    More must be done, however. Tobacco use is the single 
largest contributor to chronic disease and premature death in 
the United States. Smoking rates among high school seniors are 
at all time highs. And smoking among eighth through tenth 
graders has increased more than 50 percent since 1991. Without 
doubt, tobacco use is clearly a problem that begins with 
children, with almost 90 percent of adult smokers starting 
smoking at or before the age of 18, and the average smoker 
beginning at age 13 and becoming a daily smoker by age 14 and a 
half.
    Thank you again for the opportunity to present ASTHO's 
funding recommendations for fiscal year 1999 on these important 
public health programs. We appreciate the support this 
subcommittee has provided for public health and look forward to 
working with you during the coming years.
    Thank you, Mr. Chairman.
    [The prepared statement of Donald E. Williamson, M.D., 
follows:]


[Pages 1077 - 1085--The official Committee record contains additional material here.]



    Mr. Porter. Dr. Williamson, you get the award for getting 
more words in in five minutes----
    Dr. Williamson. Thank you, sir. [Laughter.]
    Mr. Porter. Let me ask something, though. It was not very 
long ago when this Administration made, as a centerpiece of 
their appeals in the State of the Union address and their 
budget, the immunization of children. You're telling us now 
they're underfunding the program. Can you tell me what their 
rationale is, if you know?
    Dr. Williamson. Well, I would not purport to speak for the 
Administration. But we believe it would relate to their 
assumptions about carryover. However, and we know this 
subcommittee has been concerned about carryover, but States 
have attempted to respond to that concern. Less than half of 
our States reporting any carryover now.
    And the projected carryover, $60 million, which I think 
that number was arrived at around the first of December, by the 
end of the month was substantially less when CDC was beginning 
negotiation with the States. That carryover is in fact, as we 
understand it, programmed into the fiscal year 1998 operations. 
And in fact, we expect no carryover at the end of this fiscal 
year.
    I think our real concern, Mr. Chairman, is that while we 
have made historic progress in immunizing the children of 
America, that one critical component of that is to ensure that 
a child, wherever they present for health care, we can find out 
their immunization status. That really hinges on immunization 
registries.
    And now to pull back those dollars that are critical to 
finally completing those registries that a lot of us have been 
working on we fear could in fact certainly prevent further 
progress and perhaps erode current efforts.
    Mr. Porter. Obviously we'll look into this independently, 
and we'll question the Secretary about it when she appears. 
We'll try to get to the bottom of it and be responsive to your 
concerns.
    Dr. Williamson. Thank you, sir.
    Mr. Porter. Thank you for testifying.
                              ----------                              

                                         Tuesday, February 3, 1998.

                                WITNESS

LYNNE V. CHENEY, AMERICAN ENTERPRISE INSTITUTE FOR PUBLIC POLICY 
    RESEARCH
    Mr. Porter. Lynne V. Cheney, Senior Fellow, American 
Enterprise Institute for Public Policy Research, testifying in 
behalf of AEI. Lynne, we're delighted to see you. We're great 
admirers of you and your husband. I can't think of two people 
who have given more in terms of public service to this country 
than the Cheneys. I have to admit that I thought your husband 
would have made a wonderful President and you would have made a 
wonderful First Lady.
    Ms. Cheney. Well, how can I top that.
    Mr. Porter. Maybe you'll all reconsider.
    Ms. Cheney. Thank you very much, Mr. Chairman, and 
Congressman Hoyer, who's fine State I once lived in, and Mr. 
Bonilla, whose fine State I am now a citizen of.
    I appreciate your having me here today. You've been 
listening to many concerned citizens who brought forward many 
worthy causes to be funded by the Federal Government. I am here 
on quite a different mission. I'm not here to suggest how you 
might spend money, but to suggest how you might save it. And 
that is by not providing further funding for school-to-work 
programs.
    As I noted on the editorial page of the New York Times this 
morning, these programs sound like a terrific idea. Schools 
should do a better job of preparing students for the work 
place. But as I also noted in the New York Times, the school-
to-work programs that are being underwritten by a $2.3 billion 
Federal plan, these programs are now up and running in 37 
States, and will soon likely to be in all 50. These programs 
are causing an enormous amount of parental consternation all 
across the country.
    These programs are not targeted at vocational education. By 
Federal law, they include all students. What they're doing is 
assuming unwarranted authority over the students' lives. For 
example, a central thesis of school-to-work programs is that 
eighth graders should choose careers. And to help them along, 
schools administer tests of their interests and their 
personalities and make suggestions for them, which often have 
nothing to do with what the students might harbor as their own 
ambition.
    I talked to a mother in Nevada whose daughter is an honor 
student and who wants to work for NASA. The school told her 
that she would be better in sanitation or interior design.
    A Pennsylvania woman told me about a youngster in her 
neighborhood, this woman's name is Eunice Evans, told me about 
a boy in her neighborhood who wants to be a doctor, but the 
school told him he would be better off being a gas station 
attendant or truck driver. Eunice Evans pointing out that 
school-to-work programs typically lower, try to lower the 
aspirations of youngsters who want to undertake a high profile 
career, Eunice Evans said, who are these people who are playing 
God.
    I think that is a very, very compelling question. Not only 
do school-to-work programs try to dictate job choices, they 
seek to inculcate attitudes, such as the belief that individual 
striving should be put aside in the name of group achievement. 
Having students work in teams is one way of fostering this 
thinking, and reinforcing it is group rating. A Texas Workforce 
Commission document suggests that teachers give every member of 
a team the exam grade received by the lowest scoring member as 
a way of supporting and assisting the low achieving members.
    You can see why these programs are making parents very 
angry. I set out in my op ed piece this morning many other 
aspects of these programs that I think are damaging our 
schools. But let me just emphasize one in particular. School-
to-work programs typically say, all subjects have to be related 
to the work place. Everything a student studies should be 
related to the work place.
    In Salada, Colorado, for example, the entire K-5 
curriculum, reading, writing, social studies, arithmetic, for 
an entire year, recently, was related to careers in health 
care. A document that was handed out at a Kansas school-to-work 
gathering said, well, all right, you can teach things like 
literature, but it has to be literature that looks at different 
kinds of work and workers.
    We have a long tradition in this country of using our 
schools to prepare citizens and not just workers. And we've 
always done this best when we have had students read literature 
and history, not for what they can say about the work place, 
but for what they offer as insights into the human condition.
    The tradition of the liberal arts is being severely damaged 
by school-to-work. And it is that tradition that was so named 
because the word libertas in Latin means liberty, the liberal 
arts, have often long, and I think rightfully been seen, as a 
way of training people in the habits of independent thinking 
necessary in a democracy.
    Well, all across the country, as I say, there are parents 
who are very upset about these programs. And it's really them 
I'm representing today, though I am at the American Enterprise 
Institute. I do hope that members of this subcommittee will 
listen closely to what these citizens have to say.
    [The prepared statement of Lynne Chaney follows:]


[Pages 1089 - 1092--The official Committee record contains additional material here.]



    Mr. Porter. Lynne, I'm very interested in what you have to 
say. Because I've always felt that when I was growing up, there 
was a tendency at a later age, maybe 17, to choose a career 
path. Our higher education system was organized in such a way 
to encourage early career path choices in concentrations on 
preparation for careers and not the broad, liberal education 
that I very much regret that I never got.
    I spent my time studying business finance when I should 
have been studying languages or studying engineering subjects 
when I should have been studying philosophy and literature. I 
think you're absolutely right, that if that's what we're doing 
to our young people through this program, that's exactly what I 
don't want to see done. I think it is even more than 
citizenship, it is culture, it is a lifetime of expanding your 
mind instead of narrowing it.
    That to me is the function of our education system more 
than any is to let people reach the level of their abilities 
and the extent of their dreams. If we aren't doing that, if 
we're narrowing those choices and narrowing their focus, we're 
making terrible mistakes, I think.
    Ms. Cheney. The New York Times, you know, editorial pages 
put their own titles on op ed pieces you write. They called my 
op ed piece this morning Limited Horizons, which I thought was 
a very, very good choice. Because I'm afraid that's what 
school-to-work programs are doing.
    Businessmen do say, without question, that our schools need 
to do a better job. But when you ask them what they mean by 
that, and there was recently a poll done by Public Agenda, what 
they mean is, they want new employees out of the schools who 
can write effectively, and calculate.
    The complaints that Public Agenda detailed in its poll 
were, you know, I asked this person to write a small report and 
he or she doesn't know about commas or paragraphs or grammar. 
It's the basic skills that businessmen want. I don't believe 
they really want this inculcation of attitudes and this stuff, 
early choice of careers.
    Mr. Porter. I would add to that, I think the most important 
thing for developing in a child is imagination and 
understanding of the broad world out there and how to imagine 
and dream it in ways that may improve it.
    Ms. Cheney. Well, I hope that my testimony will be of some 
use to you when it comes time to think about further funding of 
the School-to-Work Opportunities Act of 1994, or when the 
Careers Bill comes back to the House again, as I'm sure it 
will, after it goes to the Senate. Because both of these are 
part of the problem.
    Mr. Porter. Mr. Hoyer.
    Mr. Hoyer. Mr. Chairman, like you, I am a fan of, an 
admirer of, both the work of our former colleague Dick Cheney 
and of Lynne Cheney's work as well. Although I admire her work, 
I don't always agree with it. I think I may not agree with it 
in this instance, although clearly, I do agree that the 
anecdotes you use are not supportive of the program which you 
believe ought to be reduced, if not eliminated, in funding.
    Without asking the specific questions, Lynne, I would very 
much like to follow up with you on the specifics. For instance, 
if Governor Bush knows that that's happening in Texas, I would 
presume he would want to look at that himself, or Governor 
Miller in Nevada, or Governor Ridge in Pennsylvania, in terms 
of Christine Jensen in Nevada and I thought it was a 
particularly egregious example that you used in Pennsylvania.
    Because anecdotes can be very powerful, very frankly, I'd 
like to follow up and find out what the situation is, 
particularly if somebody wanted to be a doctor and was 
recommended to be a sanitation worker or truck driver or gas 
station attendant.
    I don't know, I'm sure you probably read the autobiography 
of Malcolm X, in which Alex Haley cites that as a specific 
example of why Malcolm X was so hostile to the establishment 
community for most of his life, because of exactly an example 
like that. You're absolutely right. If these examples exist, 
they are wrong. I don't necessarily follow, therefore, that the 
program is wrong, because I'm not sure that I agree with you in 
total. Clearly, I think the business community does in fact 
want people who can think, which is what you're talking about, 
as opposed to just do.
    On the other hand, we are identified in America by what we 
do. What's your name, and the inevitable second question is, 
what do you do. So the objectives of school-to-work clearly are 
to give somebody an answer to that question. In welfare to 
work, which was universally supported, not necessarily the 
specifics, but of the concept that we expect each other to work 
to the extent possible, and carry our share of the load as 
citizens. One aspect of good citizenship is in fact working.
    But I agree with you that the examples you use are examples 
which would offend, I think, most of us.
    Ms. Cheney. They're not hard to find.
    Mr. Hoyer. Including the dumbing down of giving the score 
to the lowest scorer in a team or group. I agree on teams and 
partnerships, all of that is good. But if we shoot for the 
lowest common denominator as opposed to the highest, we are 
making a mistake. I think your premise there is absolutely 
correct.
    Ms. Cheney. It's been my observation, and I don't know if 
you would agree with this, either, but it's very hard for 
Governors when there is a block of Federal money that they can 
get not to take it. We went through this with Goals2000. Even 
Governor Allen, who was more opposed to Goals 2000 notions than perhaps 
anybody else in the Nation, any other Governor, ended up taking the 
money. What they do is try to do the least damage possible with it and 
the most good once they have it.
    The school-to-work legislation is full of requirements that 
don't allow you to do the least damage possible. And what 
happens is this legislation empowers the Texas Education 
Agency, for example, whose ideas on education I think are often 
at cross purposes with the ideas of parents.
    So even though the Governor is in charge of the State, once 
that money comes into the State, I'm afraid that people use it 
in all sorts of ways that philosophy the Governor might be in 
full accordance with.
    Mr. Hoyer. In any event, I'd love to follow up with you on 
specific anecdotes.
    Ms. Cheney. I'll put you in touch with these mothers and 
people.
    Mr. Hoyer. Thank you very much.
    Mr. Porter. Lynne, as always, your testimony has been very 
effective. And we very much appreciate your coming.
    Ms. Cheney. Thank you very much for allowing me to come 
today.
    [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.]
                              ----------                              

                                         Tuesday, February 3, 1998.

                                WITNESS

GORDON AMBACH, COUNCIL OF CHIEF STATE SCHOOL OFFICERS
    Mr. Porter. Gordon Ambach, Executive Director, Council of 
Chief State School Officers, testifying in behalf of the 
Council.
    Mr. Ambach.
    Mr. Ambach. Mr. Chairman, Representatives Bonilla, Northup 
and Hoyer, it is a privilege to be with you this morning and to 
take this opportunity, first and foremost, to applaud the 
actions that your committee has taken in the past two years on 
the investment in education. I say that on behalf of the State 
superintendents and commissioners across the country.
    I wanted to say particularly, Mr. Chairman, to you, I 
applaud your leadership in the comprehensive school reform 
effort, which was first put into the appropriation for this 
year and which we hope will continue to thrive in the coming 
years.
    Mr. Porter. We give most of the credit to Mr. Obey, but we 
work together on it.
    Mr. Ambach. Well, it's a bipartisan effort, I know that, 
and that's what carried it through into realization.
    Incidentally, we are working with the states to put that in 
place. It goes off on the first of July and we're very 
optimistic that it will be effective.
    I'm very mindful of your admonitions about time, and also 
about the amounts of money or percent increases that we're 
requesting, all of us here today. The economy is strong. We 
hope it will stay strong. It is strong because of American 
enterprise and it's strong because we have the most productive 
work force in the world.
    The educational system underpins that work force. So I am 
urging here your consideration of two aspects of education 
funding. The total education budget of course is very large. I 
can't cover it in a few moments. I want to select two parts of 
that.
    The first is the innovation part of it, your new 
comprehensive school reform effort is a piece of that. Goals 
2000 is a piece of that. Title VI is, the technology funds, the 
Eisenhower program. All of these together constitute the most 
important aspect of the Federal investment in changing the 
education system.
    They total about $1.8 billion. Sounds like a lot of money. 
In terms of the $280 billion expenditure in this country, 
that's less than 1 percent. The President would move it up by 
around $300 million in this year. Frankly, we urge that you 
increase it a bit more.
    We ought to be having about a 1 percent Federal R&D 
investment. And I think you could move to that in about two 
stages. That would be a half a billion or $500 million per 
year.
    These programs work. We have provided you a copy of reports 
State by State. I know it's too long for submission into the 
record, but I can show you in that report in Illinois or in 
Texas or wherever it may be across the country, that the impact 
of these innovative Federal efforts is in fact working.
    We have a substantial increase in mathematics scores in 
this country. All over the country, since 1990. It's because of 
systematic efforts, and these programs have helped.
    I want to speak to one other general aspect of aid, and 
that is the equity or access mission of the Federal Government, 
going back to the Title I program in the mid-1960s, with the 
IDEA program in the mid-1970s, certain aspects of the Perkins 
money. All of these efforts are designed to reach out to the 
students who have the least likelihood of success in their 
educational program.
    Right now, we're serving only 60 percent of those children 
eligible under Title I. You recall that on the IDEA program, 
the initial intention was that the Federal Government would 
pick up about 40 percent of the cost. It's still stuck at 
around 10 percent of the cost. It's a big, big load.
    But what is so important about access is that if we are 
indeed to have a population where all of our residents in fact 
have the skills for citizenship, develop their intellect, their 
creativity, as you just referred to, Mr. Chairman, not only 
have capability in the work force, but have capability for 
their families and for citizenship as a whole, we have to have 
virtually all students graduating from high school from here on 
out into this next century.
    We're at about 85 percent at this point. The last 15 
percent are the most costly, because they include those who are 
least likely to succeed.
    With respect to these general programs, it is our urging 
that you be thinking about an increase at this point of 
something on the order of 15 percent in these programs. Again, 
it's a tall order. But if we're going to reach a virtual 100 
percent, we have to move that direction.
    Keep in mind that there will be 6 million more students in 
our country in 2005 than there are today. We're going up fairly 
close to a million a year on top of the issue of serving those 
who are not served right now.
    Thank you for the opportunity to speak.
    [The prepared statement of Gordon M. Ambach follows:]


[Pages 1097 - 1103--The official Committee record contains additional material here.]



    Mr. Porter. Mr. Ambach, thank you.
    I have to say about IDEA that we have done, I think, a very 
good job of moving up our commitment in that area over the last 
two years.
    Mr. Ambach. You certainly have.
    Mr. Porter. Why we are stuck on 10 percent is not quite 
accurate, we moved up to 10 percent I think, with $2 billion in 
new funding in that area over the last two years.
    Mr. Ambach. You're correct.
    Mr. Porter. But clearly, we want to try to do our best in 
that area to move that number closer to what was promised 
originally.
    Let me ask a question, though, about comprehensive school 
reform. Because you're the first witness that has testified 
regarding that newly funded program. If we can't get additional 
dollars, additional new dollars for this program, is it your 
judgment that it is worthwhile to move existing Title I funding 
into this area?
    In other words, take it away from the Title I and move it 
into comprehensive school reform? Obviously it's not going to 
be a lot of money, but it's going to be some money.
    Mr. Ambach. Mr. Chairman, I don't think you need to do 
that. The genius of the comprehensive school reform program is 
that coupled with Title I, it's leverage money. The money 
that's in the comprehensive school reform is intended tohelp, 
school by school, change the use of the resources that the school 
already has.
    Now, you don't want to take away from Title I to make the 
change and then have to restore Title I to pick up the service.
    Mr. Porter. Well, you don't want to, but what I'm saying is 
that we cannot serve anywhere near the demand that there is for 
comprehensive school reform funds, and if we can't get them 
from another source, is this a source that makes sense?
    Mr. Ambach. Well, I would urge that you not do it in this 
next year. I would urge that you get the start on this program 
and see what type of a multiple effect that you have. If it's 
really working as effectively as we all hope, then the 
possibility of some transfer over or use of some potential 
growth. The President comes in with what, $400 million new in 
Title I. The use of a potential part of that growth in 
leveraging the funds, it seems to me, would probably make some 
sense.
    I would urge that right now, we ought to have at least a 
year under our belts to see how effectively it's going to go. 
I'm very, very positive on this, and I can tell you that across 
the country, the States are as well.
    Mr. Porter. Thank you, Mr. Ambach, for your testimony. We 
very much appreciate it.
                              ----------                              

                                         Tuesday, February 3, 1998.

                                WITNESS

NATHANIAL H. MURDOCK, M.D., NATIONAL MEDICAL ASSOCIATION
    Mr. Porter. Nathan H. Murdock, M.D., President, National 
Medical Association, testifying in behalf of the Association.
    Dr. Murdock.
    Dr. Murdock. Mr. Chairman and members of the subcommittee, 
thank you for the opportunity to present the views of the 
National Medical Association. I am honored to be the President 
of the National Medical Association. I am a practicing 
obstetrician-gynecologist in St. Louis.
    Established in 1895, the National Medical Association is 
the largest organization representing African-American 
physicians. For biomedical research at the NIH, we recommend a 
15 percent increase over fiscal year 1998.
    The long term prospects for improving health disparities 
that exist among minorities in this country hinge on a strong 
Federal commitment to biomedical research. 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 
these advances.
    We believe that if increased funding is made available to 
NIH, this subcommittee and the NIH leadership should target 
additional funding for those programs focusing upon improving 
minority health. At a minimum, these programs should receive a 
proportionate increase in funding to that of the NIH overall.
    Now that there is a greater recognition of improving 
minority health status as a national priority, we are asking 
this subcommittee to make a special commitment to minority 
health research. Specifically, we are recommending the 
establishment of a $1 billion research endowment program geared 
toward individuals and institutions with a commitment to 
solving the health problems of the minority communities.
    For HRSA, the NMA recommendation is $306 million. Clearly, 
every responsible study ever conducted demonstrates that 
African-American physicians and other minorities are more 
likely to serve in medically underserved areas than their non-
minority counterparts. Even though African-Americans represent 
approximately 12 percent of the U.S. population, only 2 to 3 
percent of medical professionals in this country are African-
American physicians and 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 health professions by supporting the health 
profession training programs.
    For CDC, the recommendation is $2.8 billion. Health status 
challenges that exist in this country are magnified in 
underserved minority communities. The community based public 
health prevention activities supported by CDC represents the 
best Federal opportunities to begin solving these problems.
    CDC has initiated several outreach programs targeted at 
reducing youth violence among minority populations and 
increasing infant immunization rates among African-Americans 
and other minority children. CDC is also working closely with 
the National Medical Association to initiate programs aimed at 
reducing tobacco consumption among minority populations.
    The National Medical Association views the Healthy People 
2000 initiative as one of great importance which, if 
appropriately applied, shows great promise to eliminate a 
variety of status disparities that exist among the Nation's 
citizens. We are concerned, however, that the approximately 300 
objectives outlined in the initiative, the health status 
targets for African-Americans, are different, are lower than 
those for the general population.
    We believe that the health status targets should be the 
same for all Americans. And that if the Nation can move toward 
achieving this goal, then it would seem natural for this 
subcommittee to provide the resources and program 
recommendations that we have outlined in this testimony.
    Mr. Chairman, thank you for this subcommittee's support and 
the opportunity to present these views. Even though Congressman 
Stokes is not in the room at this time, I would be remiss if I 
did not applaud his leadership and dedication to improving the 
health status of minorities.
    Also, Congressman Bonilla, we salute your leadership in the 
health professions training programs.
    Thank you, Mr. Chairman.
    [The prepared statement of Nathanial Murdock, M.D., 
follows:]


[Pages 1107 - 1112--The official Committee record contains additional material here.]



    Mr. Porter. Both of those salutes are well earned. I might 
say that Lou Stokes has been a consistent and very strong 
advocate as you know for minority programs, and Mr. Bonilla, 
for the health professions. I've been dismayed to hear of Lou's 
intended retirement from Congress, because he's been so strong 
and such a strong member of this subcommittee. We're going to 
get the benefit of his service for the next year or so, but 
we're certainly going to miss him after that.
    Dr. Murdock. Absolutely.
    Mr. Porter. You mentioned a $1 billion program directed at 
minority health. My memory may be in error on this, but do I 
remember the President mentioning such a program in his State 
of the Union or not?
    Dr. Murdock. I don't remember, sir.
    Mr. Porter. Is this a program that the National Medical 
Association has conceived and promoted?
    Dr. Murdock. I believe that's true.
    Mr. Porter. I think it's subject to authorization, which 
means the committees would have to provide us law by which we 
can fund such a program. But in any case, we certainly will 
take your strong advocacy to heart in regards to minority 
health, and you can be assured that Mr. Stokes and Mr. Bonilla 
will be here to keep us on the right track.
    Dr. Murdock. Thank you very much.
    Mr. Porter. Dr. Murdock, we appreciate your testimony.
                              ----------                              

                                         Tuesday, February 3, 1998.

                                WITNESS

MARGE DRUGAY, THE AMERICAN NURSES ASSOCIATION
    Mr. Porter. Marge Drugay, N.D., R.N., C., Consultant on 
Healthy Aging, The American Nurses Association, testifying in 
behalf of the Association.
    I have to say, Dr. Drugay, I don't think I've ever seen the 
single letter C after a person's name. Have I missed something?
    Ms. Drugay. It indicates certification in a specialty.
    Mr. Porter. Okay. I've learned something right there. 
Please proceed.
    Ms. Drugay. Mr. Chairman and members of this distinguished 
subcommittee, may I be the first to wish you a good afternoon.
    At the outset, I would like to thank and commend 
Congressman Porter and his staff for the fine work done on 
behalf of your constituents. As a past resident of the Tenth 
District for 27 years, I have had several occasions to contact 
your office on issues of concern both to myself and to the 
nursing profession. I have always received prompt and courteous 
attention, and I thank you for that.
    I am a doctorally prepared clinical nurse specialist in 
private practice, serving as a consultant on issues of healthy 
aging. Today, however, I appear on behalf of the American 
Nurses Association and its 53 constituent State and territorial 
nurses associations.
    In my written testimony, I have addressed a number of 
programs that are important to both health care consumers and 
nurses, including programs related to work force health and 
safety. As an advocate for the economic and general welfare of 
registered nurses, ANA also recommends appropriate funding for 
the Department of Labor and related agencies that serve to 
ensure a safe and fair work place.
    Today, however, I will focus my remarks on funding for 
nursing education and nursing research. ANA applauds the work 
of this subcommittee in recognizing the Nation's largest health 
care profession, and our importance in the delivery of health 
care. Ensuring that an adequate supply of well educated nurses 
is available reaffirms the need for continued funding in fiscal 
year 1999.
    My specialty is gerontology. We are poised on the edge of a 
demographic explosion in aging. The current population of 
adults over the age of 65 is approximately 55 million people. 
By 2020, one in six Americans will be over 65. We are not 
prepared with enough qualified providers to meet the demands of 
this population, especially the fastest growing subset who are 
85 years of age. Centenarians, those over 100 years of age, are 
now a commonplace entity.
    As health care delivery continues to shift to non-hospital 
settings, the need for highly educated, scientifically prepared 
registered nurses will increase. Baccalaureate and higher 
degrees in nursing will be crucial in providing front line 
care, education and preventive services in the 21st century.
    Doctorally prepared nurses are required to conduct nursing 
research and for faculty positions to prepare our future 
nurses. To complicate matters further, an aging R.N. work force 
will also fuel the increased demand for R.N.s. According to the 
division of nursing, in 1996, the average age of nurses was 44, 
and only 9 percent of the Nation's two and a half million 
registered nurses were under the age of 30.
    Data from the U.S. Bureau of Labor Statistics shows 
employment of R.N.s will increase faster than the average for 
all occupations through 2006. The recent trend to reduce R.N. 
staffs and increase the use of unlicensed assistive personnel 
has proved unsatisfactory, producing poor outcomes and 
prompting more hospitals to boost R.N. recruitment.
    Federal support for nursing education in Title VIII is 
essential. This is the only Federal money earmarked for nursing 
education. Funding supports curriculum development and other 
programs to expand the focus of nursing education to non-
hospital settings and greater health promotion efforts. Funding 
also supports greater numbers of minority nurses who provide 
culturally competent, linguistically appropriate health care 
services to underserved populations.
    Today, we are requesting fiscal year 1999 funding of $70.8 
million for the programs funded under the Nurse Education Act. 
This is an 8 percent increase over current funding.
    Our second priority is funding for the National Institute 
of Nursing Research at NIH. Again, we applaud this 
subcommittee's commitment to advancing behavioral science 
research. Nursing research is an integral part of nursing care, 
as indicated by Dr. Hinshaw. And it has shown that health 
promotion is effective.
    In Illinois, we developed a successful wellness model 
geriatric outreach program, based on the HHS initiatives, 
Healthy People 2000, and put prevention into practice. We 
support the Administration's proposed funding level of $68.3 
million for this program, and would recommend funding of 15 
percent over the fiscal year 1998 level of $63.5 million, 
bearing in mind the Chair's comments.
    We appreciate the opportunity to comment on funding for 
nursing education and nursing research programs. We thank you 
for your continued support, with a special thanks to 
Congressman Bonilla, and look forward to working together as 
you go through the appropriations process.
    Thank you.
    [The prepared statement of Marge Drugay follows:]


[Pages 1116 - 1125--The official Committee record contains additional material here.]



    Mr. Porter. Dr. Drugay, did you say you were a former Tenth 
District resident?
    Ms. Drugay. Yes.
    Mr. Porter. Where have you gone?
    Ms. Drugay. I am currently a Fifth District resident in 
Arizona.
    Mr. Porter. Arizona?
    Ms. Drugay. Yes, Tucson.
    Mr. Porter. You left our wonderful State of Illinois?
    Ms. Drugay. My husband retired, I had to go along with him.
    Mr. Porter. Well, we'll forgive you in that case. Thank you 
very much for your good testimony, and we'll do the best that 
we can to meet the needs.
                              ----------                              

                                         Tuesday, February 3, 1998.

                                WITNESS

DOUGLAS SCHACKE, NATIONAL ASSOCIATION OF INDEPENDENT COLLEGES AND 
    UNIVERSITIES
    Mr. Porter. Douglas Schacke, Dean of Admissions and 
Financial Aid, Barat College, Lake Forest, Illinois, testifying 
on behalf of the National Association of Independent Colleges 
and Universities.
    Dean Schacke, you are, I hope, a constituent of mine. I 
have an honorary degree from your institution, as you are 
probably aware, and I will listen very intently to what you 
have to say.
    Mr. Schacke. Great, thank you.
    I, too, Mr. Porter, would like to thank you for all the 
support that both you and your staff have offered to us at 
Barat over the years.
    My name is Doug Schacke, I'm Dean of Admissions and 
Financial Aid at Barat College in Lake Forest, Illinois. Thank 
you for this opportunity today to speak with you on behalf of 
the important issue of funding student aid.
    According to the 1990 census, 13.7 percent of the 
population of this country had at least a bachelor's degree. 
That's 13.7 percent of the population. I don't know about you, 
but most of my professional and personal circles that I travel 
in, it's easy to take higher education for granted. Most of the 
people that I come into contact with have at least a bachelor's 
degree, if not a masters or a Ph.D.
    Less than 14 percent of this population in 1990 had a 
bachelor's degree. I find this figure astonishing.
    You probably have heard the phrase, knowledge equals power. 
In many ways, this phrase is very true. Higher education is key 
to keeping our Nation prosperous and successful. I am here 
today to talk about the importance of federally funded programs 
for higher education.
    I've been involved in student aid for seven years. Barat 
College is a strong liberal arts college serving 800 students, 
mostly from the surrounding communities. Barat has a strong 
tradition of educating students who come from diverse 
backgrounds and experiences.
    Over 20 percent of our students are from minority 
populations. In addition, 38 percent of the student body is 
over the age of 25. Most of these individuals have been in the 
work force for some time and realized that college education is 
a necessary tool for moving ahead in their professions.
    With this in mind, our curricula is designed to provide 
both theoretical knowledge and practical experience. Our 
tuition is at about the national average for private colleges, 
$12,570. I'm testifying today on behalf of NAICU, the National 
Association of Independent Colleges and Universities. This 
organization represents a broad array of over 900 of the 
Nation's private, non-profit colleges and universities.
    First, I would like to thank you for the strong support you 
have shown for student aid in higher education. In particular, 
I would like to highlight the increase you provided last year 
for the Supplemental Educational Opportunity Grant program and 
the increase in the Pell maximum. This increase in SEOG was the 
first in five years, and the increase in the Pell grant was the 
largest in nearly two decades.
    The current student aid programs play a critical role in 
our Nation's ability to educate its citizens. These programs 
are often referred to as patchwork, but I can tell you from 
first-hand experience that they work together to provide 
assistance to many students.
    For example, without a combination of Federal, State and 
institutional aid, a student like Roberto Silva would not be 
able to achieve his dream of becoming a high school teacher. 
Growing up in Chicago and attending public schools, Roberto has 
experienced first-hand the importance of education and the 
challenges that inner city students face.
    Because of this, Roberto has dedicated himself to becoming 
a high school social studies teacher. Not only does he desire a 
career in teaching, he is passionate about serving as a role 
model for disadvantaged urban youth. His goal is to show young 
people that they have options and how to plan for their 
futures.
    However, coming from a single parent household with no 
income to support his quest for higher education, Roberto knows 
that financing would determine whether or not his dream would 
become a reality. Without a combination of the maximum Pell 
Grant, SEOG, Federal work study, or Perkins loan, a state grant 
and additional assistance from the college, he would not be a 
junior in college today, preparing to student teach next year. 
If even one form of these aids were reduced or eliminated, his 
ability to continue in college would be in serious jeopardy.
    Another student I want to tell you quickly about is named 
Shane Abbott. Shane came to Barat from Texas. When he was a 
senior in a public high school in Dallas, Texas, he was 
deciding where to go. He found out about us because we had two 
programs that were of strong interest to him. We have a strong 
theater major, which is his intended field of pursuit. We also 
have a strong program for college capable students who have 
learning disabilities.
    Because he came from a disadvantaged high school setting, 
he wasn't diagnosed with learning disability until the end of 
his junior year. Our program seemed like it was the perfect fit 
for him. However, when he filled out his FSFA, he realized that 
his estimated family contribution was zero. Meaning that they 
had no funds to fund his quest for higher education.
    Now, the difference between Shane and the previous student 
that I mentioned, Roberto, is that Shane didn't come to Barat 
from the State of Illinois. Therefore, he wasn't eligible for 
the generous state grant program of at least $4,000. We had to 
work with Shane very closely to see what we could do as an 
institution to help support his quest for higher education.
    Well, it worked out that Shane wasn't able to come to us 
right away. Shane took two years off, worked in a factory, 
saved some money and was able to start Barat last year. He 
current is a sophomore.
    Instead of going through each of the different grant 
programs and loan programs, I want to highlight one specific 
one, and that's the Federal work study program. I urge you to 
provide $900 million as requested by the President. Work study 
is a cornerstone self-help student aid program. Students are 
able to earn funds to help pay their way through college.
    This investment in student aid is an investment in our 
Nation's future. Our preparation for the 21st century hinges 
upon our attention to educating our citizens.
    I thank you, and I welcome any questions.
    [The prepared statement of Douglas Schacke follows:]


[Pages 1129 - 1135--The official Committee record contains additional material here.]



    Mr. Porter. Dean Schacke, can I go back to your 13.9 
percent figure for bachelor's degrees? That's----
    Mr. Schacke. Yes, 13.7.
    Mr. Porter. That's 13.7 percent of the whole population?
    Mr. Schacke. No, that's 13.7 percent of the population that 
would be of the age to at least have a bachelor's degree. 
That's over 21.
    Mr. Porter. That does seem unusually low, and includes 
obviously all advanced degrees beyond that?
    Mr. Schacke. Exactly.
    Mr. Porter. The President initially considered zeroing out 
the Perkins capital contribution to fund an increase in SEOGs 
to $679 million. In the end, the President put $60 million into 
a Perkins increase and reduced SEOGs to $619 million. If you 
had to make that decisions, which would you put at the higher 
priority?
    Mr. Schacke. I would put the SEOG at the higher priority.
    Mr. Porter. You would?
    Mr. Schacke. Yes.
    Mr. Porter. Why?
    Mr. Schacke. I've found that with most of our students, the 
SEOG is much more critical in supplementing their aid package 
than the Perkins loan is. It has, the combination of all 
together, SEOG stands out as more critical in the whole 
package.
    Mr. Porter. Is Barat under the direct loan program?
    Mr. Schacke. Yes, we are.
    Mr. Porter. And you're finding that satisfactory?
    Mr. Schacke. Yes, it has certainly some challenges 
administering it on our side, but it has certainly increased 
the time in which students receive the funding. So we have, the 
students have definitely seen a benefit from that.
    Mr. Porter. Dean Schacke, thank you for coming to testify. 
We very much appreciate it.
    Mr. Schacke. Thank you.
                              ----------                              

                                         Tuesday, February 3, 1998.

                                WITNESS

EUGENE LEHRMANN, AMERICAN ASSOCIATION OF RETIRED PERSONS
    Mr. Porter. Eugene Lehrmann, Immediate Past President, 
American Association of Retired Persons, testifying in behalf 
of the Association.
    Mr. Lehrmann.
    Mr. Lehrmann. Good afternoon, Mr. Chairman. I'm Gene 
Lehrmann, the Immediate Past President of the American 
Association of Retired Persons, from Madison, Wisconsin. Thank 
you for this opportunity to comment on various programs which 
benefit older Americans, especially low income and minority 
elderly.
    Of particular significance in this regard, the Older 
Americans Act and Low Income Home Energy Assistance Program, 
better known as LIHEAP, these initiatives play key roles in 
helping needy Americans preserve their dignity and 
independence. 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 this landmark legislation. At a 
minimum, the Association recommends for an inflation adjustment 
next year for OAA programs. We applaud Congress for providing 
increases this year in many of the programs.
    Among other things, the extra funds mean nutritional meals 
for more seniors, particularly those who are isolated and 
frail. The home delivered meals program is very often the only 
human contact some of these persons have in a given day. And 
their lives are enriched by these visits in ways which cannot 
always be measured.
    The increase in funds this year will also provide 
additional supportive services. These include transportation 
for doctor and pharmacy visits, homemaker assistance and legal 
counseling. A critical part of the Older Americans Act is the 
Senior Community Service Employment Program, known as SCSEP.
    As one of the national sponsors of this activity, the 
Association has first-hand knowledge regarding its 
effectiveness. SCSEP has made a real difference in the lives of 
many unemployed, low income older Americans by providing part 
time jobs which are useful in 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, are dependent on work 
provided by persons through SCSEP.
    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.
    With regard to the Low Income Home Energy Assistance 
Program, Mr. Chairman, at a minimum the Association strongly 
urges at least $1.2 billion in regular funds next year, an 
amount equal to the total spending level in fiscal year 1997. 
Because this program is advance funded, Congress provided $1.1 
billion for fiscal year 1999 in the fiscal year 1998 
appropriation. We are recommending an increase of $115 million 
over that level for the coming fiscal year.
    We also recommend the same amount for the fiscal year 2000 
advance appropriation. LIHEAP is important to all of its 
beneficiaries. But none more so than the low income older 
person, housing, health care and energy.
    I want to thank you for this opportunity to present our 
views regarding appropriations next year for programs which 
benefit older Americans.
    [The prepared statement of Gene Lehrmann follows:]


[Pages 1138 - 1147--The official Committee record contains additional material here.]



    Mr. Porter. Mr. Lehrmann, thank you for your testimony. 
Just out of curiosity, what did you do before you became 
President of AARP?
    Mr. Lehrmann. I was an educator in Wisconsin. When I 
retired I was the State Director of Vocational Education.
    Mr. Porter. So you're originally from Madison? You spent a 
good deal of your adult life there?
    Mr. Lehrmann. Yes. I spent, actually now, it's 30 years of 
my life in Madison. Other than that, I was in Kenosha, 
Wisconsin for nine years. And I taught in Wassau, Wisconsin, 
for 11 years.
    Mr. Porter. Kenosha's not far from my district. I go right 
up to the Wisconsin line.
    Mr. Lehrmann. I noticed that, sir.
    Mr. Porter. Madison is certainly a wonderful town to live 
in.
    Mr. Lehrmann. It is, it's a lovely city.
    Mr. Porter. Regarding LIHEAP, you're probably aware that I 
have a great problem with the program. Because I think while it 
meets a need, the need is one related to poverty more than it 
is to energy costs. Because energy costs have gone way down 
since the program was enacted. And the rationale for the 
program has, in my judgment, completely disappeared.
    The need is still there, however, and you've got people who 
need the help. I wish they would restructure the program in 
such a way that it is aimed at the right target, and not hang 
it on the I think hook of energy prices, which are no longer 
the serious problem they were at the time of the Arab oil 
embargo.
    Otherwise, I think it's obviously a place for people who 
need help.
    Mr. Lehrmann. No question, Congressman. It follows low 
income, it follows poverty. And you know as I do, living in the 
northern part of the country, 20 degrees below zero at night 
takes a lot of energy. But your point is well taken. I think 
funding sometimes directs how programs develop and this may 
have been the case.
    Mr. Porter. To me, it's an evidence of the Federal 
Government's inability to change and eliminate and restructure 
programs whose rationale has long since disappeared. I think it 
kind of undermines the support for the need that I readily 
admit is very much there.
    Obviously the mechanism of providing help by paying on 
energy costs is probably a very good one. It's simply, the 
rationale's not an accurate one.
    Mr. Lehrmann, thank you very much for coming to testify. We 
very much appreciate it.
    Mr. Lehrmann. Thank you very much, Congressman. My pleasure 
to be here.
                              ----------                              

                                         Tuesday, February 3, 1998.

                                WITNESS

JAVIER SALAZAR, THE ADAP WORKING GROUP
    Mr. Porter. Javier Salazar, member of the ADAP Working 
Group, testifying in behalf of the Working Group.
    Mr. Salazar.
    Mr. Salazar. Good afternoon. My name is Javier Salazar and 
I'm testifying on behalf of the Aids Drug Assistance Program 
Working Group, where I'm an active participant representing 
AIDS Action Council here in Washington.
    I'd like to start by thanking you, Mr. Chairman, and the 
rest of the committee, for the extraordinary leadership that 
you've shown in support of all AIDS programs, as well as the 
AIDS drug assistance program. I also want to thank you on 
behalf of the tens of thousands of people living with HIV and 
AIDS nationwide, their families and their friends.
    The work of this committee has played a tremendous role in 
the realization of the incredible news that we hear daily about 
the strides that we as a Nation are making in the fight against 
HIV disease. You've seen the headlines, the statistics about 
the dramatic drops in AIDS deaths and about the potential of 
the new, powerful therapies.
    Just today, today's Washington Post reports a stunning 44 
percent in AIDS deaths in the first half of last year.
    But I want to tell you about the fantastic news that these 
new therapies have brought in my life, and how fortunate I was 
not only to have had access to them, but to when and how I was 
able to take them. Originally from San Antonio, I'm the son of 
proud Mexican immigrants. I came to Washington after graduating 
from the University of Notre Dame.
    Once here, I had the privilege of working for Senators 
Lloyd Bentsen and Kruger from my home State of Texas. I was the 
young, ambitious face that so characterizes Capitol Hill. I was 
that face that you see in your office and in the hallways.
    When things could not have been better, I tested positive 
for HIV. I was 24 then. My T-cell count was 349, and I thought 
that all hope was lost. But I had other things to worry about. 
Not only was I faced with the tragedy of my own infection, but 
with the tragedy that my partner, Ron Mallon, whom I loved 
dearly, was dying of AIDS.
    At a time when I should have been worrying about furthering 
my career, achieving my goals, I was saying goodbye to Ron in a 
hospital here in Georgetown. Most would accept that the death 
of a partner is something that people deal with later in life. 
I was not that lucky. Ron died on August 8th, 1995, a week 
after my 27th birthday. My T-cell level had now fallen to 210, 
just 10 above an AIDS diagnosis.
    A month after, I learned about combination therapy with 
protease inhibitors. I joined a clinical trial and began to 
take the potent combination of potent antivirals, including a 
protease inhibitor. I've been on the very same combinationfor 
over two years. My viral load, the measure of active virus in my 
bloodstream, has been undetectable for over two years. My T-cells have 
tripled, and at last count, they were well over 700. I'm 29 now.
    What is so exceptional about that? Well, once I thought 
that I would surely develop AIDS soon and not even live to see 
the age of 40, or even 35. Life seems more hopeful now. Why? 
Because I got the drugs, the medical care, services and the 
support that is essential to taking these drugs successfully.
    Even more, I started taking these drugs in combination. I 
had never put an anti-HIV drug in my body. I was what is 
referred to now as treatment naive. I took a combination of 
drugs from the very beginning, and my viral load was suppressed 
below detection.
    This strategy is now the driving force behind the recently 
compiled NIH-PHS guidelines for the treatment of HIV disease. 
My friends have started calling me the living guidelines made 
real, real hope. But along with this bittersweet pill, I can't 
help to think if only, if only my partner would have had the 
chance that I got. Maybe he could be alive today. If only more 
people could get the drugs and the care that they need, they 
could share in the hope that I am so fortunate to have today.
    That's where the work of this committee is so important. 
Every person must have the opportunity to access these helpful 
therapies early and in accordance with the new treatment 
guidelines. It's critical that individuals have access to the 
entire arsenal of drugs and not have to suffer from the 
disastrous implications that may occur as a result of only 
having access to substandard anti-viral therapy and care.
    This committee has shown great commitment to the needs of 
people living with AIDS. I ask you to continue and strengthen 
your commitment by increasing funding for ADAP and to providing 
the necessary resources to provide the medical and enabling 
services critical to the success of drug therapy.
    Thank you for this opportunity, and thanks for letting me 
share my story. There's a written statement for the record.
    [The prepared statement of Javier Salazar follows:]


[Pages 1151 - 1158--The official Committee record contains additional material here.]



    Mr. Porter. Thank you, Mr. Salazar. Could I ask a question? 
Is there side effects to these drugs?
    Mr. Salazar. Yes. I myself have experienced two bouts of 
kidney stones. I don't know if you have ever had a kidney 
stone.
    Mr. Porter. Very painful, I understand.
    Mr. Salazar. So yes, I've had those side effects. I have 
general kind of fatigue. I felt better when I wasn't on them, 
to be honest with you, physically. But yes, a great deal of 
side effects.
    Mr. Porter. Well, we realize how expensive they are and how 
we need to provide them to people who are at obviously serious 
risk. We're very encouraged that the President has placed this 
this year at a very high priority in his budget, which gives us 
a lot of support for providing those kinds of resources.
    Mr. Salazar. You've led the way.
    Mr. Porter. So I think we're all on the right track now, 
and we appreciate your testimony and we'll do our best to 
continue providing support for the ADAP program.
    Mr. Salazar. Thank you.
    Mr. Porter. Thank you.
                              ----------                              

                                         Tuesday, February 3, 1998.

                                WITNESS

ARTHUR L. DAY, M.D., AMERICAN ASSOCIATION OF NEUROLOGICAL SURGEONS AND 
    THE CONGRESS OF NEUROLOGICAL SURGEONS
    Mr. Porter. Arthur L. Day, M.D., James and Newton Eblen 
Eminent Scholar and Professor of Neurosurgery at the University 
of Florida, testifying in behalf of the American Association of 
Neurological Surgeons and the Congress of Neurological 
Surgeons.
    Dr. Day. Thank you, Mr. Chairman. I am, as you mentioned, a 
professor of neurological surgery at the University of Florida. 
I appear here today on behalf of the American Association of 
Neurological Surgeons, the AANS, and the Congress of 
Neurological Surgeons, the CNS.
    We wish to thank you for the opportunity to comment on the 
fiscal year 1999 neuroscience agenda. Spinal disorders, 
vascular diseases of the brain and genetic disorders represent 
the three most common afflictions to the central nervous 
system. With these conditions in mind, we urge the subcommittee 
to direct its funding to five areas of research for the 
upcoming year.
    The first is head and spinal cord injury. Trauma to the 
brain and spinal cord is the leading cause of death and 
disability among children and young adults. The direct and 
indirect costs of traumatic spinal cord injuries alone are 
estimated to be over $7 billion annually.
    New drugs can reduce the amount of the brain and spinal 
cord damage produced by these injuries. Functional recovery can 
also be enhanced by prompt therapeutic interventions.
    Ultimately, the ability to restore function of injured 
brain or spinal cord is the key to all types of central nervous 
system diseases. We believe that the basic research targeted at 
this goal should be a major priority for the following year.
    Number two, stroke. Stroke is the third leading cause of 
death in the United States. It's also the leading cause of long 
term disability. Every year, 500,000 new cases are diagnosed in 
our country at an estimated cost of $30 billion.
    Aggressive medical treatments before or early after the 
onset of stroke symptoms can now significantly improve 
outcomes. Recently, the concept of brain attack, similar to the 
implications of a heart attack, has gained the support of many 
neurologists and neurosurgeons across this country. The major 
thrust of brain attack programs is an early diagnosis, a rapid 
restoration of blood flow to areas of the brain lacking 
circulation, and pharmacological protection of brain cells from 
irreversible damage.
    These therapeutic actions must be carried out rapidly 
within a window of opportunity before irreversible brain damage 
occurs. We are convinced that your continued support for these 
programs will lead to a substantial life saving and function 
saving progress in this area.
    Number three, molecular treatment of brain tumors and other 
disorders of the nervous system. Brain tumors represent the 
third leading cause of cancer deaths in middle aged males. 
Tumors of the nervous system are the second leading cause of 
cancer deaths among children.
    Every year, more than 10 percent of the 400,000 new cancer 
patients in this country see their disease spread to the brain 
or spinal cord. In many such patients, the nervous system tumor 
constitutes the single most immediate threat to their life and 
function.
    The application of molecular biology and its techniques to 
the central nervous system have revolutionized our 
understanding of how brain tumors grow and spread. Therapeutic 
drugs and genetic material can now be directly injected into 
specific regions of the brain to kill tumor cells, while other 
parts of the brain and body are shielded from injury.
    Disorders such as Parkinson's disease, Tay-Sachs, 
Huntington's disease and Alzheimer's dementia can be similarly 
treated with such magic bullets, and can reduce the $100 
billion annual cost of these diseases. Your continued support 
can help identify the full range of genetic abnormalities that 
underlie these crippling nervous system disorders.
    Number four, research into spinal disorders. Disorders of 
the spinal cord, the spinal nerve roots and the bony spine are 
common causes of pain and disability in our country.Each year, 
15 to 20 percent of the population will have an episode of back pain. 
And during their lifetime, about 70 percent of U.S. citizens have an 
episode of serious back or leg pain caused by diseases of the spine.
    Currently, back and leg pain are the second most common 
reason for physician visits in this country. Recent progress in 
basic neuroscience research has markedly enhanced our 
understanding of basic pain mechanisms and how the spinal cord 
controls movement and integrates sensation. Further research 
that identifies these mechanisms that cause pain and loss of 
function whenever the spinal cord or nerve roots are injured 
can help allow the identification of more effective methodology 
and less invasive treatments in the relief of such symptoms.
    It is also clear that some patients with serious spinal 
disorders can only be helped with surgery. Clinical and outcome 
research in this area could help physicians to more 
expeditiously evaluate patients with spinal disease and then 
more appropriately select patients for operative treatment, 
thus limiting the patient's time of anguish before definitive 
therapy is performed.
    Number five, and finally, outcomes research. Technology is 
now driving the contemporary treatment of neurologic disorders 
at an unprecedented degree. The cost of these new technologies 
can be easily justified if the benefits of decreased suffering 
and additional years of useful survival outweigh the amortized 
costs of such treatments.
    Outcomes research can do much to guide patients, physicians 
and policy makers in therapeutic decision making and resource 
allocation. We urge you to provide funds to the Agency of 
Health Care Policy and Research to improve the methodology for 
outcomes research in neurological disorders, and to support 
pilot studies in the treatment of stroke, brain tumors and 
degenerative spine disorders.
    Mr. Chairman, as we approach the final year of the decade 
of the brain, and now the new millennium, the AANS and the CNS 
hope that the Congress will continue its commitment to 
biological research for nervous system disorders. These funding 
priorities are costly but can have a major impact on the 
quality of life for our citizens.
    Thank you for your considerations.
    [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 Arthur L. Day, M.D., follows:]


[Pages 1162 - 1166--The official Committee record contains additional material here.]



    Mr. Porter. Dr. Day, thank you for your testimony.
    I have to say that number four had a particular resonance 
with me, as a year ago, sitting in this chair, I had the most 
horrific back pain that went on for more than four months. I 
guess I fall in that 80 percent category of having experienced 
it.
    All of these are very important areas for us to focus our 
attention on, and I can assure you we're going to do our very 
best to provide the resources that are needed.
    Dr. Day. Thank you.
    Mr. Porter. Thank you for coming to testify.
    That concludes our witness list for this morning's session. 
We stand in recess until 2:00 p.m.

                           Afternoon Session

    Mr. Porter. The subcommittee will come to order.
    We continue, this is our sixth session with public 
witnesses, and we now have had the benefit of the testimony of 
100 witnesses. And we have about 100 to go. What we're 
attempting to do, obviously, is to start early in the session 
in order to avoid interruptions from recorded votes. We will be 
able to do that today and hopefully not have too many on 
Wednesday and Thursday.
    Our attempt, obviously, is to allow as many public 
witnesses to testify as possible. We are oversubscribed, but 
we're doing our best to accommodate as many as we possibly can. 
We would appreciate all witnesses observing the time limits 
that allow additional numbers to testify.
                              ----------                              

                                         Tuesday, February 3, 1998.

                               WITNESSES

KATHY HUNTER, INTERNATIONAL RETT SYNDROME ASSOCIATION
DEAN HUNTER (SON)
    Mr. Porter. Our first witness is Kathy Hunter, the Founder 
and President of International Rett Syndrome Association, 
accompanied by Dean Hunter, her son, testifying in behalf of 
the Association.
    Mr. Hoyer.
    Mr. Hoyer. If I might, I want to welcome Kathy Hunter. As 
you know, she has testified, Kathy, when's the first time you 
testified, about eight, nine, ten years ago?
    Ms. Hunter. About 1986.
    Mr. Hoyer. So 11 years ago, 12 years ago. And she has done 
an extraordinary job. Rett Syndrome, as I'm sure some of you 
know, is a neurological disease that impacts after about 12 to 
18 months of development, so that the child, it's almost 
exclusively female children. Do we have any male children that 
we've identified? Two. But exclusively female children that are 
impacted.
    The way I got involved in this, I go to church with a Rett 
Syndrome child, Christy Smith, who is now I guess 25 years of 
age. So I've known her since she was I guess 8 or 9. She's an 
extraordinarily warm and loving individual. She is now 
partially institutionalized and partially at home with the 
Smiths.
    Stacy, who is your sister, is an extraordinary young woman 
herself, and has been here. I see Stacy's not here this year. 
You mentioned this morning somebody who had a son and the 
courage they show and the commitment they show and the 
difference they make. Kathy Hunter is one of those people, Mr. 
Chairman.
    Mr. Porter. We all agree with that. Thank you, Mr. Hoyer.
    Mr. Dickey.
    Mr. Dickey. Mr. Chairman, I'd like to state for this side 
of the aisle that we're very pleased that you go to church, Mr. 
Hoyer. [Laughter.]
    Mr. Hoyer. I want to state from this side of the aisle, 
when I do, I pray for the other side of the aisle. [Laughter.]
    Mr. Porter. Especially for Arkansas.
    Ms. Hunter, we're not charging your time against those 
comments.
    Ms. Hunter. Thank you, Mr. Chairman, Mr. Hoyer and 
distinguished members of this committee. It is my greatest 
honor to appear before you once again as Founder and President 
of the International Rett Syndrome Association.
    I speak on behalf of thousands of girls and their families 
whose lives have been changed forever by Rett Syndrome. I must 
admit that I wish this committee had compelling magic powers 
and could make even the bravest dreams come true. If that were 
so, I would rejoice to never have to come before you again.
    As Helen Keller once said, although the world is full of 
suffering, it is full also of the overcoming of it. We applaud 
your enthusiastic support for the National Institutes of Health 
and its dedication to the health and welfare of Americans, 
particularly during these difficult fiscal times. We are most 
grateful for your past support of research into Rett Syndrome 
and other neurological disorders, and ask for your vigorous 
continued support for the national research effort in fiscal 
year 1999.
    Imagine for a moment a wonderful baby girl as pink and 
round as a cherub and as precious as a porcelain doll. Picture 
her first steps and delightful babble as she takes in the world 
around her with wonder and laughing abandon. See her squeal 
with delight as she plays with her favorite toys. Imagine the 
hopes and dreams for a fulfilling life that lie ahead.
    Then imagine what it must be like to witness her laughter 
turn suddenly to frightening screams, her babble to deafening 
silence, her toddling steps to stillness, her recognition and 
understanding to utter confusion. Think of what it would be 
like to watch one seizure after another and the development of 
painful stiffening joints and curvature of the spine. Think of 
what it must be like to watch her grow, yet never grow up.
    Imagine that no one knows how or why it happened, and no 
one knows how to make her better. Finally, imagine that she is 
your child. It is happening somewhere in America just as I 
speak. Families watch in fear and disbelief as their little 
girl slips away from their reach.
    As one mother wrote, the children are a constant reminder 
that this can happen to anyone. When you see a child with Rett 
Syndrome, you come face to face with the fact that you can do 
everything right and still have a child with severe multiple 
disabilities.
    Another mother writes to express the painful yet valuable 
growth process it takes to cope and gain perspective. There is 
added dimension to our character, a sense of strength to adjust 
and accept, a more tender heart to care deeply and lovingly, to 
love so unconditionally. Jen was the most beautiful baby I ever 
saw. I would gaze upon her beauty, relish in the thoughts and 
dreams of motherhood and life with this beautiful daughter.
    Girls with Rett Syndrome cannot talk or use their hands, 
and many do not walk. They need help for every aspect of daily 
living, bathing, dressing, feeding, toileting, communicating. 
Yet they began their lives with great promise.
    It is only through recent research that we have come to 
more clearly understand their true potential. Dr. David 
Koppenhaver, researcher at Duke University, said that these 
girls are complicated, but we are convinced that they are 
teachable. Until now, girls with Rett Syndrome have been 
classified as severely to profoundly mentally retarded and 
unteachable, spending their lives trapped in bodies that will 
not allow them to show us what they understand.
    What a revelation to find that with the use of augmentative 
communication techniques, we can expect them to learn. Hope is 
alive.
    My daughter Stacy, now 23, was the first child diagnosed 
with Rett Syndrome in the United States in 1984. My son Dean 
joins me today as a witness to the life story of Rett Syndrome. 
He was five years old when Stacy was born. He grew up with the 
many challenges our family faced, but only recognized the full 
depth of our anguish when he recently became a father himself.
    We are fortunate that the most striking feature his 
beautiful son inherited are his deep blue eyes. But with each 
new child begin in our family, we must begin a tormenting cycle 
of worry again, wondering whether the second year of life will 
bring joy or tragedy.
    One of the greatest barriers to genetic studies has been a 
relatively small number of families with more than one affected 
child. A recent collection of data on several new families with 
more than one child and two male children with Rett Syndrome 
have contributed revealing clues to the mystery. We're very 
grateful that in June of this last year NICHD sponsored a study 
group on the genetic basis of Rett Syndrome, at which time a 
number of innovative research strategies using advanced 
genetics techniques, were shared.
    In response, the International Rett Syndrome Association 
has made a commitment to fund $94,000 in 1998 to the newly 
established Rett Syndrome Consortium, and continues to fund 
seed grants and recruit talented researchers to the field, in 
addition to identifying new cases and encouraging research 
participation.
    Exciting work includes the development of a mouse model 
showing definite alterations in receptors in regions of the 
brain that appear to function abnormally in Rett Syndrome. On 
the genetic map, we have located the state and city and have 
narrowed the research to finding the right street.
    The study of living brain cells and nasal biopsies has 
shown that these cells are inactivated, not dying as previously 
thought. This work may provide a scientific marker or prenatal 
test for Rett Syndrome.
    Other promising findings may lead not only to the 
scientific marker but to rational treatment approaches and a 
potential cure. Autopsy studies have revealed abnormalities in 
specific areas of the brain which correlate to the clinical 
problems seen in Rett Syndrome, such as movement, equilibrium, 
cognition, awareness, behavior, memory and emotion. The heart 
has been shown to possess an image or conduction system thought 
to parallel what is seen in the brain and possibly responsible 
for the sudden, unexpected death in sleep that is seen in Rett 
Syndrome. That is the largest single cause of death, sudden 
death in sleep.
    These studies lead to the speculation that growth factors, 
which are responsible for maturation of the heart and central 
nervous system, are altered, thus leading to the developmental 
arrest which is seen. We are most grateful to the subcommittee 
for their earnest consideration of this request for increased 
funding for all neurological disorders, especially as we come 
to the close of this decade of the brain.
    The intensive search for genes related to developmental 
delay, mental retardation and growth failure will undoubtedly 
lead to findings in a number of other disorders which affect 
many thousands of Americans. As we stand on the threshold of 
discovery, we urge you to provide funding for studies which may 
have a high risk for failure, but which at the same time may 
yield important new information which increases our 
understanding of Rett Syndrome and other neurological 
disorders.
    We heartily support the recommendations of the Friends of 
NICHD and the National Committee for NINDS Funding, and look 
forward to the progress to come that will bring about a better 
life for our daughters.
    In closing, I want to quote Margaret Mead, who said, never 
doubt that a small group of thoughtful, committed citizens can 
change the world. Indeed, it is the only thing that ever has.
    Just as our daughters look to us for help, we look to you 
for hope. Thank you.
    [The prepared statement of Kathy Hunter follows:]


[Pages 1171 - 1176--The official Committee record contains additional material here.]



    Mr. Porter. Well, Kathy, you're one of those band of 
dedicated individuals. You've been here and you've never given 
up for a moment, and you are making a tremendous difference.
    We appreciate the leadership and commitment that you've 
shown, and we're going to do our best to provide the funds so 
we can get some breakthroughs and prevent this disease from 
affecting further human beings. Thank you for being here, and 
thank your son for being here as well.
    [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.]
                              ----------                              

                                         Tuesday, February 3, 1998.

                                WITNESS

DORR DEARBORN, M.D., CASE WESTERN RESERVE UNIVERSITY AND RAINBOW BABIES 
    AND CHILDREN'S HOSPITALS OF CLEVELAND
TERRY ALLEN
    Mr. Porter. Dr. Dorr Dearborn, Associate Professor of 
Pediatrics, Case Western Reserve University, representing the 
University and the Rainbow Babies and Children's Hospitals of 
Cleveland.
    Mr. Stokes.
    Mr. Stokes. Thank you, Mr. Chairman.
    Mr. Chairman, it's a pleasure for me to welcome before our 
subcommittee today Dr. Dorr Dearborn, who as you've stated is 
Associate Professor of Pediatrics at Case Western University. 
He today is representing both Case Western Reserve University 
and Rainbow Babies and Children's Hospitals of Cleveland.
    Accompanying him this morning is Mr. Terry Allen, who 
represents the Cuyahoga County Board of Health. I'd like to 
extend a warm welcome to both of you. It's a pleasure to have 
you here.
    Thank you, Mr. Chairman.
    Dr. Dearborn. Mr. Chairman, Congressman Stokes and other 
members of the subcommittee, I am Dorr Dearborn, a pediatrician 
at Case Western Reserve University School of Medicine. I 
specialize in children's lung diseases.
    We thank you for allowing us to tell you today about an 
outbreak of pulmonary hemorrhage that is killing infants in the 
Cleveland area and around the country. A previously rare 
disorder, acute pulmonary hemorrhage, has been diagnosed in38 
infants in the Cleveland area in the past 5 years. This serious 
disorder causes infants to cough up blood and usually requires 
intensive care measures to save them.
    Fourteen of these infants have died, including nine 
originally thought to be sudden infant death syndrome. Thirty 
infants were African-American, all of whom lived in a limited 
geographic area of western metropolitan Cleveland, an area of 
older housing stock. This area corresponds directly with 
Congressman Stokes' district.
    An investigation of this outbreak led by the CDC has linked 
this disease to exposure to a toxic mold called Stachybotrys, 
which was found in the infants' homes. This mold requires 
water-saturated wood products to grow, and appears to have 
occurred secondary to chronic basement flooding or from chronic 
plumbing or maintenance problems. Once the source of water 
damage is corrected, the mold can sometimes be removed by a 
bleach solution. However, more extensive abatement is often 
necessary.
    Stachybotrys, while not a common mold, is know to have a 
wide distribution. We are aware of a total of 122 cases of 
acute pulmonary hemorrhage in infants nationwide over the past 
5 years. As you can see from the map that we handed out to you, 
most of your States have had at least one case. Especially in 
the Chicago area, and also more recently in Milwaukee.
    The rapidly growing lungs of young infants appear to be 
especially vulnerable to the toxins made by this mold. The CDC 
investigation also found that environmental tobacco smoke was 
frequently a trigger to precipitate the acute bleeding.
    This is an emerging disease. We need to act now to learn 
how to prevent it and how to treat it. I urge you to provide 
new supplemental funds to both the CDC and NIH to address this 
problem.
    The CDC needs, in our view, an additional $3 million in 
order to address several areas. They need to help us in 
northeastern Ohio, to the Ohio health agencies, who have 
already started a prevention program. We need to further 
investigate the Cleveland area to find out why we are having 
over a third of the cases in our immediate area, and also the 
other Great Lakes cities where they seem to be clustering.
    We need to mount a nationwide study to see if the other 
infants that are having pulmonary hemorrhage also have toxic 
mold in their homes. The CDC needs to develop rapid methods to 
detect and quantify airborne toxic fungi in order for us to 
better make objective public health decisions, particularly 
whether it is safe for infants to remain in water damaged 
homes.
    We urge you to provide to the NIH, specifically to the 
National Institute of Environmental Health Sciences, an 
additional $2 million to initiate research on tests to detect 
direct exposure, recent exposure to the toxic fungi, in order 
to help us diagnose this disorder more quickly. We need to 
develop infant animal models as a way to model how these toxins 
cause the human disease.
    We need to find out why these infants continue to have low 
grade bleeding in their lungs, even though they have been 
removed from the toxic environment, both the fungus and the 
smoke environment. We need to determine the relationship of 
this disorder to the fatal mechanisms that occur in SIDS.
    We urge you to help us attack this newly recognized 
environmental hazard that is killing young infants in our 
community. These fiscal requests are a crucial initial 
empowerment.
    Thank you.
    [The prepared statement of Dorr G. Dearborn, M.D., 
follows:]


[Pages 1179 - 1181--The official Committee record contains additional material here.]



    Mr. Porter. Dr. Dearborn, thank you very much.
    I personally was not aware, before your testimony, of this 
very serious problem. We will do our best to give CDC the 
resources they need to address it. Thank you for bringing it to 
our attention.
    Mr. Stokes.
    Mr. Stokes. In light of the fact that this new, emerging 
disease has attracted national attention in the media, I wonder 
if I could just ask a couple of questions of Dr. Dearborn while 
he's here. Thank you.
    Dr. Dearborn, I'm struck by the fact that you've made 
reference to the fact that there are 122 of these cases 
nationwide, and yet a third of the cases are in the Cleveland 
area, specifically in my Congressional district. Then about 
half of them are around the Great Lakes.
    Do we know why we have that type of a phenomena?
    Dr. Dearborn. No, we have a few speculations, but that's 
all they are at this point. They need to be investigated, 
particularly by the CDC, to see if we can find out why there is 
that clustering. It may have something to do with the older 
housing, but Cleveland is not the only city with older housing. 
It may have to do with the sewer system, but again, the sewer 
system is not necessarily unique to Cleveland. There are 
several clues we need to follow up.
    Mr. Stokes. Is there any relation between this type of 
disorder and sudden infant death syndrome?
    Dr. Dearborn. There appears to be some overlap, at least in 
the cases in the area of your district where we had a number of 
the deaths. Twelve percent of the deaths for a three year 
period, 12 percent of the SIDS deaths, were actually due to 
this disorder. This is not going to give us an explanation for 
the majority of SIDS cases, on the other hand, it will give us 
insight to a significant proportion of them, and in the process 
of researching this disease, we've already had some new 
insights, how to approach some of the questions that are being 
presented by SIDS.
    So there is a small but meaningful overlap.
    Mr. Stokes. My last question, Mr. Chairman.
    Dr. Dearborn, as I understand it, of the 38 cases in the 
Cleveland area, 30 of them were African-American children, is 
that correct?
    Dr. Dearborn. That is correct.
    Mr. Stokes. And is the same true for the balance of the 122 
cases? Would the majority of those also be African-American 
children?
    Dr. Dearborn. The majority are African-American, probably 
about two-thirds. Another fifth are Hispanic and the remainder 
are of other Caucasian races. It appears to be more directly 
related to socioeconomic conditions than anything directly to 
race, although obviously we need more research to understand 
that.
    Mr. Stokes. I appreciate the Chairman's reference to the 
fact that our committee will see that NIH gets the kind of 
money necessary to investigate this new and very serious 
emerging disease.
    Thank you very much for your testimony.
    Dr. Dearborn. Thank you.
    Mr. Porter. Thank you, Mr. Stokes. Thank you, Dr. Dearborn.
    [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.]
                              ----------                              

                                         Tuesday, February 3, 1998.

                                WITNESS

LOU HOLTZ, JUVENILE DIABETES FOUNDATION INTERNATIONAL
    Mr. Porter. Next witness is Lou Holtz, Juvenile Diabetes 
Foundation International volunteer and former head football 
coach at Notre Dame University. Coach, it's good to see you.
    Mr. Holtz. Thank you.
    Mr. Porter. Mr. Dickey.
    Mr. Dickey. I wanted to introduce you all to this man. Two 
steps before he was appointed by the Pope to coach Notre Dame, 
he coached at Arkansas. [Laughter.]
    Mr. Porter. We won't hold that against him.
    Mr. Dickey. I want to tell you--as you were. At Arkansas, I 
want to say this in all sincerity, he established what's called 
the do-right rule. He kicked some people off the team and they 
rushed up to him and said, why, and he said, because they 
didn't do right.
    He has taken the loyalty of the State of Arkansas 
completely, 100 percent. This is a quality man. Whatever he 
puts his name behind, he has thought it out and it's worthy of 
listening to.
    So I recommend Lou Holtz to you all and you to Lou Holtz, 
and this issue to us as a Nation. Thank you for coming, Coach 
Holtz.
    Mr. Porter. Ms. Northup.
    Ms. Northup. Mr. Chairman, I would also like to recommend 
Coach Holtz. Coach, both my parents went to Notre Dame and St. 
Mary's. I met my husband the first night of my freshman year at 
Notre Dame. And nine more of my sisters graduated from there.
    So I think the gold on the dome might be out of the tuition 
that we spent over the years. But anyway, I can tell you that 
every game that Notre Dame plays is replayed in my house for a 
solid week until you know every play by heart.
    We had great admiration for you, not only for your 
football, but also for the motivational talks that you gave in 
Louisville and other cities around the country, particularly 
the young people, about working hard and taking a chance. Those 
were very stirring words and stirred children and adults alike. 
I'm very happy to see you here, and my parents and husband will 
be thrilled to hear that I saw you in person.
    Mr. Porter. Coach, even despite Mr. Dickey's endorsement, 
we are happy to hear from you. [Laughter.]
    Mr. Holtz. Thank you, Mr. Chairman, distinguished guests 
and panel. It is a pleasure and an honor to address this group. 
I am not going to speak from any prepared notes, but I'm going 
to speak from my heart.
    I'm hear to speak on behalf of 16 million people that 
suffer from diabetes. Eight hundred thousand people are going 
to be afflicted with it this year. Approximately on the 
average, 35,000 of your constituents have diabetes. That speaks 
to hundreds of thousands of people that become associated with 
it through that.
    We need help. I'm here to say, we need help. We can't do 
it. We've tried. I personally have a son, Kevin, at age 15 was 
diagnosed with diabetes. We didn't even know what diabetes was. 
It was a shock to us. We found out that he'd have to take 
insulin shots three times a day, he'd have to watch his diet.
    What we really weren't prepared for was the psychological 
damage that it did to a 15 year old, to his self-confidence, to 
his decision making process. Thank goodness, my wife had the 
time, the effort and the resources to get him through that. He 
eventually went to Notre Dame and became a lawyer. He moved to 
Texas, passed the Texas bar, I told my wife it might be the 
first bar he'd passed since he turned 18, but we're very proud 
of him. [Laughter.]
    It's been a very difficult struggle, but we feel we've been 
blessed. It's the leading cost. When you sit down and you find 
out all of a sudden, he has a better chance to have blindness, 
to have problems with his kidneys, his chances are greatly 
enhanced by two to four times that he's going to have heart 
problems, and the list goes on and on.
    It really is something that we really are unaware of, 
because people try to hide it. They don't want to stand there 
and have people watch you take a shot or talk about diabetes. 
You can't tell who's a diabetic, but I can tell you this, it 
affects the family, it affects your health.
    At Notre Dame, I find out my secretary's daughter was a 
diabetic and had all kinds of problems. I find out my assistant 
backfield coach was a diabetic. Our equipment trainer's wife 
was diabetic and blind at age 35. We played Michigan in 1980, 
and Friday morning I get a call, and thank goodness, my son 
lived with Kevin. He said, Kevin's in a coma. We rushed him to 
the hospital, he stayed in that coma from insulin.
    What happened is, he went to be, and you have to take your 
blood and sugar and you get a reading, it's 125. You go to bed 
and all of a sudden it drops down, you go into insulin shock 
and you don't wake up any more. We didn't know whether he was 
going to make it or not.
    Our story is not unusual. This is happening all the way 
around. We spend $137 billion a year on related illnesses or 
the caring for diabetes. We haven't cured it. All you're doing 
is going on a life sustaining project to be able to take 
insulin. There is no way in this world the free enterprise 
system is going to solve it, because they make a profit from 
diabetes.
    Now, I'm not saying that they're for diabetes, but there's 
no great motivation. The only way this thing is going to be 
solved is through research.
    I heard Peter Uberroth say at my son's graduation at Notre 
Dame, he said, if enough people care, you can solve anything. 
There are a lot of people who care about diabetes. I believe we 
raised $57 million last year in individual funds alone. That is 
an awful lot of money. You could purchase just about anything.
    But we can't do it without help. We need the Government's 
help. And it's not just on my son Kevin. We're talking about 16 
million people. I haven't even mentioned the families. We're 
talking about what happens years down the road.
    I conclude with this. I've always told our football team to 
win. And win stands for what's important now. As I look at it, 
the future of the young people, I look at my grandchildren, I 
wonder if they're going to have it, I know the trials and 
tribulations, the pain and sorrow that goes along with it. So 
I'm here on behalf of 16 million people, saying we need help.
    Thank you for your time and listening to me.
    [The prepared testimony of Lou Holtz follows:]


[Pages 1186 - 1188--The official Committee record contains additional material here.]



    Mr. Porter. Coach, let me say that, and I often say this, 
none of us up front here legislative in a vacuum. All of us 
have individuals in our families that have been touched by 
various diseases. My wife has diabetes, it came on two years 
ago, adult onset. I am very seriously concerned about her 
health, I can see the effects on her. What you tell us is all 
unfortunately too true.
    That's the reason why this subcommittee has placed 
biomedical research at a very high priority. We've done our 
very best to provide the resources to science that it needs to 
unlock the key to this and other diseases. I can tell you right 
now we'll do our very best to continue to do that, place it at 
a high priority and give our research scientists the tools they 
need to get us by this.
    Mr. Holtz. Thank you very much. Because I said to my son 
Kevin, you know, it wasn't a decision he made, it wasn't a 
choice. It's just congenital, and it's difficult to handle. But 
we appreciate it.
    Mr. Porter. Thank you very much for coming here and 
testifying. You're making a difference, and that's what counts.
    Mr. Holtz. Thank you very much.
                              ----------                              

                                         Tuesday, February 3, 1998.

                                WITNESS

CLYDE McCOY, UNIVERSITY OF MIAMI
    Mr. Porter. Dr. Clyde McCoy, Professor of Epidemiology and 
Public Health and Director, NIDA Comprehensive Drug Research 
Center, testifying in behalf of the University of Miami.
    Dr. McCoy.
    Dr. McCoy. Thank you, Mr. Chairman, subcommittee.
    Boy, it's really tough following Notre Dame. [Laughter.]
    Because I not only represent the University of Miami, but 
also Florida State University today. But before you leave, I do 
want to exclaim that I am Irish. I am also a direct descendant 
of the infamous McCoy clan from Eastern Kentucky, and a former 
professor at the University of Kentucky. Laughter.]
    Mr. Chairman, members of the subcommittee, I do appreciate 
the opportunity to present testimony on behalf of the 
University of Miami and Florida State University, who is our 
in-state research and education partner, university-wide. This 
is a very unique partnership between two of our more prominent 
universities.
    As yet, we haven't joined our football teams, Lou, but 
we're thinking about it.
    We're deeply appreciative of your leadership, Mr. Chairman, 
and of the subcommittee's confidence. We're especially thankful 
for the supportive language from your subcommittee over the 
past two years, and look forward to your continued support for 
this very unique collaboration in 1998.
    I fully understand and appreciate that at no time in the 
past have you and your Congressional colleagues faced more 
challenges and more constraints. Thus, we appreciate even more 
your willingness to consider this important and unique 
university-wide research and education partnership.
    Also as a former manager for Tom Luken, Mr. Stokes, who 
served on this Hill for more than 18 years, I am personally 
impressed with the dedication, commitment and hard work that 
all of you put in to serving this great country of ours. We 
feel strongly that the unique challenges that you face have 
never been greater.
    At the same time, there has never been a time in history 
when there has been greater opportunity for the world to share 
in the accumulation of knowledge that could have healing and 
unifying consequences for all human populations. I think you're 
hearing from all those people here today.
    People around the world thirst and hunger for our 
democratic way of life, which in large part is based upon the 
scientific enterprise, which allows us to be a knowledge based 
and democratic society which prizes knowledge and objectivity 
for supporting not only our health and our economy but also our 
political processes. We as scientists are most appreciative to 
you for funding the most science based society ever.
    The University of Miami and Florida State University Risk 
Assessment and Intervention Consortium is dedicated to reducing 
medical and social costs through the development of cost 
efficient, effective delivery of earlier interventions. Our 
consortium will bring together scientists from a very broad 
array of traditional research disciplines to face scientific 
challenges in a trans-disciplinary and timely manner.
    In the last 50 years, as you know, tremendous strides have 
been made by the sciences to improve our world's health and 
environment. It now appears that the next major breakthroughs 
for improving quality of life and for reducing socioeconomic 
costs lie at the intersections of those sciences.
    Presently, these various sciences and institutes that fund 
them work too independently from one another to optimally 
address the broad and interrelated nature of these problems. To 
fully consider specific policy implications, or to allow for 
the investigation of the most threatening risks in the most 
timely manner.
    My own scientific research is somewhat unusual, in that I 
have conducted research and published in three broad 
disciplinary areas of cancer, HIV and substance abuse in many 
countries, with many hundreds of scientists. This perspective 
of more than 25 years makes me yearn for a greater scientific 
enterprise that allows us to reach across these various 
disciplines in order to investigate problems more quickly and 
to apply the findings in a much more rapid manner.
    We feel that our consortium will provide this type of 
partnership between science and government to assure a more 
optimal and cost effective quality of life. Risk assessment as 
a field incorporates scientists from a wide range of 
disciplines and directs their attention specifically to 
controlling, regulating or intervening with populations at risk 
as early as possible.
    At present, there is no identifiable broad based 
institution we know of that concentrates solely upon the full 
and complex range of risks utilizing multi-disciplinary and 
trans-disciplinary science. Therefore, our consortium will be 
in a perfect position to improve quality of life, decrease 
mortality and morbidity, and through identifying risks earlier 
and by intervening earlier, be in a position to save millions, 
if not billions, of dollars through the application of 
knowledge to early intervention.
    We know that intervention with effective prenatal programs 
saves a tremendous amount of money that otherwise would be 
spent on children after birth. Also, our own research 
experiences with the early detection of breast cancer have 
demonstrated through the screening of over 30,000 medically 
underserved women, using an efficient mobile van, rotating 
among 12 primary public health centers, that these programs not 
only save lives, but save dollars.
    As is true for cancer, we already possess a great deal of 
knowledge that could be used to develop interventions as well 
as preventive strategies for many other diseases that present 
challenges throughout the world, such as HIV, substance abuse 
and others that you've heard about here today. With the 
increasing costs of institutionalization and public subsidies 
and of Medicaid and Medicare, every person who we prevent from 
being institutionalized or dependent on public subsidies not 
only saves governmental dollars, but will also add to the 
economy of this country.
    Just as important, the quality of life for these 
individuals, their families, their communities and our society 
at large, will be improved. It is becoming ever more apparent 
that we as a Nation cannot afford to ignore prevention in early 
intervention strategies, since later management and later 
treatment are much too costly in the terms of quality of life 
and necessary expenditures of dollars.
    Our proposed organization will cross disciplinaryboundaries 
to accomplish these goals for us.
    We thank you so much for your valuable time and stand ready 
to serve you in any way possible.
    [The prepared statement of Clyde B. McCoy follows:]


[Pages 1192 - 1201--The official Committee record contains additional material here.]



    Mr. Porter. Dr. McCoy, thank you very much for your strong 
and good testimony. Again, we will do our best.
    Dr. McCoy. Thank you very much.
    Mr. Porter. Thank you, sir.
                              ----------                              

                                         Tuesday, February 3, 1998.

                                WITNESS

ROBERT M. CAREY, M.D., ASSOCIATION OF AMERICAN UNIVERSITIES
    Mr. Porter. Robert M. Carey, M.D., Dean of the University 
of Virginia School of Medicine, testifying in behalf of the 
Association of American Universities. Am I correct, Dr. Carey, 
that you are accompanied by Sue Quantius?
    Dr. Carey. Yes.
    Mr. Porter. One of the most able people ever to serve on 
Capitol Hill, and as a member of the staff of this 
subcommittee, Sue, it's really wonderful to see you. Thank you 
for being with us.
    Dr. Carey, we welcome you.
    Dr. Carey. Thank you, Mr. Chairman.
    Mr. Chairman, distinguished members of the subcommittee, I 
am Dr. Robert M. Carey, Dean of the University of Virginia 
School of Medicine. I am pleased to be here today representing 
the Association of American Universities, the AAU, an 
organization of 62 public and private research universities 
across the United States and Canada.
    Today, we are pleased to have the opportunity to speak 
about a Federal program of enormous importance to our 
universities, research supported by the National Institutes of 
Health. We come before the subcommittee at a time of great 
promise for biomedical research. We are grateful for the 
subcommittee's consistent, strong support of the NIH. You have 
been champions of biomedical research, particularly you, Mr. 
Chairman, even when substantial cuts were being made elsewhere 
in your appropriations bill.
    Your commitment to biomedical science has cone much to 
create the current atmosphere in which support for the NIH is 
spreading throughout the country. We are greatly heartened by 
the groundswell of public sentiment for investing in biomedical 
research, and the possibility that the healthy economy and the 
fiscal accomplishments of Congress will permit financing this 
priority.
    You have already heard many witnesses describe the 
tremendous opportunities in science and the breathtaking speed 
at which discoveries are being identified. I would like to give 
you one example that comes from my own field, high blood 
pressure research. High blood pressure, or hypertension, is the 
most common cause of heart failure, which in turn is the most 
common reason for hospitalization over the age of 65.
    Hypertension is caused by the interaction of many different 
genes. In the past, the polygenic inheritance of blood pressure 
has prevented our understanding of the mechanisms underlying 
hypertension. Therefore, we do not have a treatment of 
hypertension specific for the cause of that disease.
    Recently, the gene for a hormone, angiotensin, has been 
shown to account for a substantial fraction, about 15 percent, 
of hypertension for the first time. Clearly, the techniques of 
molecular biology are poised to open the door to specific 
treatment and cure of high blood pressure, once its genetic 
determinants are known.
    The AAU supports efforts underway throughout the biomedical 
community to increase substantially funding for the NIH. We 
join the ad hoc group for medical research funding in its call 
for a 15 percent increase for NIH in fiscal year 1999 as the 
first step in a five year effort to double the NIH budget.
    We are greatly encouraged by the President's request for an 
8.4 percent increase for the NIH as the starting point for the 
debate this year. The AAU would like to highlight needs which 
should be addressed if new resources become available. The AAU 
continues to emphasize the investigator-initiated grant as the 
bedrock of the NIH.
    We also want to focus attention on pressing needs in two 
areas, clinical research and institutional infrastructure. The 
dominance of market forces in the health care system has 
drained resources that previously had been used to support 
clinical investigation and clinical investigators. Training and 
career support for clinical researchers at all levels needs 
strengthening.
    The general clinical research centers program, which 
supports inpatient and outpatient research facilities, training 
research support staff and other resources crucial to clinical 
investigation, should be targeted for additional resources. The 
second area of concern is institutional infrastructure. 
Additional resources need to be invested in renovating outdated 
facilities, supporting animal research facilities, financing 
instrumentation, and developing new research technologies.
    In addition, the AAU encourages Congress to consider 
reinstituting a peer reviewed accountable institutional grant 
program that can be targeted to specific institutional needs. 
Mr. Chairman, thank you for this opportunity to express our 
views and add our voices to the growing chorus of advocates for 
biomedical research.
    [The prepared statement of Robert M. Carey, M.D., follows:)


[Pages 1204 - 1209--The official Committee record contains additional material here.]



    Mr. Porter. Dr. Carey, thank you very much for your 
excellent testimony. I have to say, it just happens that you're 
the one to receive my sermonette, because I've given it to 
every panel that has come before us in this session. And it 
goes something like this.
    This subcommittee, I think, would place raising the support 
for biomedical research at a very high priority, and would 
commit the resources to doubling the research enterprise over 
the next five years, if we have the resources with which to do 
it. The difficulty is that even the President's budget, and 
he's suggesting only doubling the commitment over 10 years or 
50 percent over 5 years, even the President's budget depends 
upon revenues that we think are not likely to materialize in 
the budget process here in the Congress.
    He's got about $100 billion of net new revenues, a large 
part of which is a tobacco settlement that I don't think is 
going to happen, and other increases in taxes that i don't 
think are going to be voted. That means it's going to be 
difficult for this subcommittee to get the kinds of resources 
that we need in our budget allocation without some real 
strength in the Budget Committee.
    We hear you very clearly, very loudly. We need your help in 
the budget process as well, however, to give us the tools we 
need to work with, so we can give you the tools you needto work 
with. That's my sermonette, and I thank you very much for listening to 
it and for testifying.
    Dr. Carey. I thank you so much for your support.
    Mr. Porter. Thank you, Dr. Carey.
                              ----------                              

                                         Tuesday, February 3, 1998.

                                WITNESS

ANTONIO DE LA CRUZ, M.D., AMERICAN ACADEMY OF OTOLARYNGOLOGY-HEAD AND 
    NECK SURGERY, INC.
    Mr. Porter. Antonio De la Cruz, M.D., President, American 
Academy of Otolaryngology-Head and Neck Surgery, Inc., 
testifying in behalf of the American Academy of Otolaryngology 
and the Head and Neck Surgery Inc.
    Dr. Rubin. Good afternoon. I'm Dr. Rubin, and I'm here to 
introduce our President, Dr. Antonio De la Cruz, who will 
testify. However, before we begin, I'd like to tell you how 
much we appreciate your work, Mr. Chairman, and that of the 
subcommittee for the past several years. For without your 
leadership, the marvelous groundswell of support for the NIH 
that we see would not have occurred.
    Dr. De la Cruz. Mr. Chairman, thank you for the opportunity 
to present my testimony, and for all that you have done in the 
past.
    Thanks to leadership like yours, and the funding of NIH, we 
have a real chance to wipe out communication disorders, or at 
least to improve them significantly. In the last few years, we 
have been able to detect some of the genes of hereditary 
deafness. We have been able to improve in the reconstruction of 
holes in eardrums and replace little bones to improve hearing 
of something that has occurred. We have developed an electronic 
ear that can replace nerve loss. For the first time we are able 
to stimulate the brain that way and replace an organ.
    But we are at the brink. We have a good chance to 
eradicate, or to have a significant impact on communication in 
the next few decades. We are indeed needing the basic research 
that only government can do to establish more of the genetic 
basis of disease.
    We also became aware, yesterday we spent all day at NIH, 
and particularly at NIDCD, the deafness and communication 
disorders, the smallest and the youngest of the Institutes of 
Health. Analyzing the economic consequences of communication 
deficits and the social price of that, it became obvious after 
seven or eight hours of analyzing the situation how our ability 
to earn a living has changed.
    From the beginning of the century, where manual labor was 
the most important element, to today's communication. We feel 
that in this year, the projections of the Bureau of Labor is 
that by the year 2005, 92 percent of all jobs will require a 
tremendous amount of communication.
    So we think we have a tremendous impact. The National 
Institute of Deafness and Communication Disorders has a mission 
to put together the social impact and the basic research, the 
technology to try to make those individuals productive in our 
society. Not only the tremendous price of human pain of being 
deaf or not being able to speak or have a language disorder or 
speech disorder, but also the cost to our country.
    The productivity of the individual today, with computers, 
with telephones, with faxes, is depending on communication. So 
we are part of the ad hoc group of labor, and I mentioned to 
you, we are looking for a 15 percent increase. Actually, asking 
for NIDCD, the Deafness and Communications Disorders, an 18 
percent. Because we feel that the urgency of the smallest and 
the youngest of the Institutes is there.
    We did work this morning with the Budget Committee trying 
to find other avenues to afford to you the caps and the 
amounts, to see if we can make a tremendous difference in the 
next few years.
    I want to thank you personally on behalf of the Academy, 
which represents 10,000 otolaryngologists and the largest 
organization in the world, for all that you have done in 
allowing us to get where we are today.
    [The prepared statement of Antonio De la Cruz, M.D., 
follows:]


[Pages 1212 - 1220--The official Committee record contains additional material here.]



    Mr. Porter. Thank you very much for your testimony, Dr. De 
la Cruz. I think NIDCD is no longer the youngest. In fact, I 
think there are two younger institutes.
    Mr. De la Cruz. It is very young and one of the lowest. 
When you see all the budgets----
    Mr. Porter. Human genome research and nursing are both 
younger, if I'm correct.
    Mr. De la Cruz. They are the youngest, and when you see all 
the fundings of the National Institutes of Health, it's way 
down on the right hand. We want to move it to the middle 
somehow.
    Mr. Porter. That message I got very clearly. [Laughter.]
    Mr. Porter. We thank you for your testimony, and we'll do 
our best, as you know, to put it at a high priority.
    Dr. De la Cruz. Thank you very much, Mr. Chairman.
    Mr. Porter. Thank you.
    [Clerk's Note.--Information required pursuant to clause 
2(g)(4) of Rule XI of the Rules of the House of Representatives 
wa snot received from this witness or from an entity 
represented by the witness]
                              ----------                              

                                         Tuesday, February 3, 1998.

                                WITNESS

DEBBIE FLADER, ADVOCATES FOR EPILEPSY
    Mr. Porter. Our next witness is Debbie Flader, parent of a 
child with epilepsy and National Co-Chair of Advocates for 
Epilepsy, testifying in behalf of the Advocates.
    Ms. Flader.
    Ms. Flader. Good afternoon.
    I am the parent of a child with epilepsy. I'm here today on 
her behalf and on behalf of hundreds of thousands of other 
children and families with epilepsy across America. Thank you, 
Mr. Chairman, and members of this committee, for inviting me to 
share my story with you today.
    Six years ago a nightmare began for my family that has 
profoundly changed our lives. On February 12, 1992, my daughter 
Noel began to display neurological symptoms that we neither 
recognized nor understood. Noel was eight years old, and she 
had been a perfectly healthy child, but on that day, she began 
to complain of bizarre sensations, a feeling that she had a 
bubble in her cheek, and that her hands were falling, a 
complaint that her teeth hurt.
    With days, these symptoms worsened, and we realized that 
something very dreadful was happening. The day my daughter 
developed epilepsy, we joined two and one half million other 
American families who also are affected by this disorder.
    Approximately 30 percent of people with epilepsy do not 
respond to current therapies. Nearly one million people with 
uncontrolled intractable seizures. And 30 million Americansdie 
each year of epilepsy related causes. Noel is one of those 30 percent 
whose seizures cannot be controlled.
    A week after the initial symptoms surfaced, we noticed 
further signs of trouble. Noel's eyes and mouth began to twitch 
periodically and she began to drool. Our family physician 
scheduled an MRI to search for more reasons for these spells, 
as we called them. Though these twitching and drooling episodes 
were coming by the hour, the MRI showed nothing.
    We went home and watched helplessly as Noel's condition 
deteriorated. The pain in her teeth became excruciating. The 
spells were now occurring every 15 minutes. She lay awake most 
of the night with the right side of her face twitching.
    We took her to a neurologist, but after an exam and an EEG 
he called normal, he sent us home with Advil for pain in her 
teeth and a diagnosis of a psychosomatic illness. This doctor 
then explained that Noel was probably exhibiting a typical 
middle child reaction to not getting enough attention at home. 
We knew, however, that her suffering was very real.
    Finally, we took Noel to Children's Memorial Hospital in 
Chicago. After weeks of tests, we were told that she had 
epilepsy.
    Noel remained alert during her seizures, which by now would 
last up to an hour. Imagine watching your child's face contort 
and twitch for that long a period. Imagine that she be 
conscious, yet unable to control her body's movement. Imagine 
the sense of helplessness you feel.
    Noel was given many different anticonvulsant medications, 
but to no avail. She vomited constantly, but the seizures still 
continued, one after another. She was started on a very, very 
high dose of Prednisone, a corticosteroid, and this seemed to 
calm down the seizures a bit.
    We witnessed a total personality change due to the 
medication. Our once playful and happy child was angry with 
everyone and everything. She used foul language and became very 
violent. We desperately searched for a better answer.
    In August of 1992, Noel had an EEG and an MRI, and this 
time a small lesion was found on her brain. To rule out an 
underlying tumor, a biopsy was done, along with a sub-peel 
transection, which is a surgery designed to break up the 
electrical current in the brain without removing any tissue, a 
technique that sometimes is effective in limiting seizures, 
though not for Noel.
    Fortunately, there was no tumor. The post-surgical 
diagnosis was Rasmussen's encephalitis, a sometimes 
degenerative condition of the brain that can cause epilepsy.
    What's disturbing is that the nature of Noel's seizures has 
changed. She now has what are called atonic or drop attacks. 
This means she can fall at any moment and severely injure 
herself. She can no longer attend school with other kids. She 
is presently tutored at home to avoid the risk of injury. For a 
young teenager, this is no life.
    Recently, along with other parents, I have formed Advocates 
for Epilepsy. Our hope is that by telling our stories, which 
mirror the experience of hundreds of thousands of other 
children and families across this country, we can persuade you 
to devote more resources to the fight against epilepsy.
    We are grateful to the Epilepsy Foundation of America and 
the Epilepsy Foundation of Greater Chicago for supporting our 
efforts. Perhaps because many people assume epilepsy is easily 
treated by medications, or perhaps because it is a disorder 
that for thousands of years has been stigmatized by those who 
don't understand it, the investment in epilepsy research has 
lagged far behind what is needed.
    Though millions of Americans like Noel struggle with 
epilepsy, Federal research dollars into this complex short 
circuiting of the brain currently amounts to just $20 per 
patient per year. As the accompanying chart reflects, that is 
comparatively little. We are asking that you triple research 
dollars spent on epilepsy. Specifically, we're requesting an 
increase from the current $54 million to $130 million in the 
next fiscal year.
    These are dollars we desperately need to unlock the 
mysteries of the brain. We need new research, new solutions, 
and much more energy in the field.
    The future of our children depends on this effort. The 
future of all people with epilepsy lies in discovering causes, 
new treatments, and potential cures. Although 75 percent of 
epilepsy begins in childhood, anyone can develop epilepsy at 
any time in their lives.
    With the current low level of funding, new discoveries to 
help these people are a long way off. We appeal to your sense 
of compassion, but we also want you to know that beyond the 
personal costs, the costs to our Nation of intractable epilepsy 
are staggering. Frequent emergency room visits, lost school 
days, special ed, inability to work, dependency on families and 
permanent government support, these costs, which amount to some 
$3 billion per year, far outweigh the investment in medical 
research we are requesting.
    In closing, Mr. Chairman, let me say that our children's 
lives are passing quickly, brutalized by repeated seizures and 
living under the veil of heavy medication. They truly are our 
heroes. It is now time for us to become their heroes.
    Please help us to succeed in finding better treatments and 
possibly even a cure for epilepsy.
    [The prepared statement of Debbie Flader follows:]


[Pages 1224 - 1228--The official Committee record contains additional material here.]



    Mr. Porter. Ms. Flader, thank you for your testimony.
    You're a Chicagoan, right?
    Ms. Flader. Yes.
    Mr. Porter. You mentioned the Children's Memorial, which is 
one of our great treasures in the City of Chicago, and 
apparently had some degree of help for your daughter's disease.
    Ms. Flader. Some. I've traveled all over the country 
looking for better. One seizure per day is not satisfactory. I 
need no seizures.
    Mr. Porter. But they were the first, according to what I 
thought you said, to actually identify this.
    Ms. Flader. Right. They did help me, right.
    Mr. Porter. One thing I want you to know, and I think it's 
very important that people understand this, and that is that we 
do not fund by disease. We fund by Institute.
    Ms. Flader. I understand that.
    Mr. Porter. I knew you understood it, but this is 
sermonette number two. We do, however, and very forcefully, I 
think, attempt to influence the direction that NIH takes in 
respect to its priorities. I think NIH has been very responsive 
to the concerns that Congress expresses. Yet we are very 
careful not to override scientific judgment with political 
judgment.
    I think that's exactly the way this ought to work. And it 
is a cooperative endeavor, in a very real sense, that we engage 
in with NIH to attempt to work with them on priorities. And 
yet, in the final analysis, NIH makes those decisions through 
science and not through the political process.
    We appreciate your testimony. There's been a number of 
groups here to testify on epilepsy. Is there some coordination 
between them?
    Ms. Flader. Yes, we're being supported by the Epilepsy 
Foundation of America, and the Epilepsy Foundation of Greater 
Chicago. We've been working together collaboratively on this 
issue, trying to get more Federal dollars for research.
    Mr. Porter. We're going to do our best.
    Ms. Flader. Thank you.
    Mr. Porter. Thank you for testifying.
    [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]
                              ----------                              --


                                         Tuesday, February 3, 1998.

                                WITNESS

A. GERALD ERICKSON, METROPOLITAN FAMILY SERVICES
    Mr. Porter. A. Gerald Erickson, President, Metropolitan 
Family Services, testifying in behalf of Metropolitan Family 
Services. Gerry, it's very good to see you. We thank you for 
coming to testify. Another one of the treasures of our city.
    Mr. Erickson. Thank you for having me. If I might do a 
quick sort of reverse sermonette, I just wanted to say a word 
in support of Coach Holtz' testimony, my wife and I are also 
parents of a juvenile diabetic. And everything he said was 
certainly right on.
    I'm also aware of the leadership that you've given in this 
area in the past, and just wanted to say a word of 
appreciation.
    Thanks for the opportunity to testify again this year. I am 
testifying on behalf of Metropolitan Family Services of 
Chicago. We are a comprehensive, non-profit, non-sectarian 
human service organization that serves over 100,000 families a 
year in the Chicago area.
    While our focus on working with families has remained 
constant, the needs of families have changed as culture and 
policies have shifted. As communities, public systems and 
families express needs, we respond. I present this testimony 
this year to provide a status report on Metropolitan Family 
Services' ongoing efforts to be innovative and effective in our 
programming in the areas of community violence prevention, 
mental health services and elder care.
    Since the passage of the Violence Against Women Act in 
1994, community coalitions to prevent intimate partner violence 
have been forming all over the country. In the context of this 
movement, we have been discussing an exciting new initiative 
with the Centers for Disease Control and Prevention which we 
are calling Coordinated Community Responses to Prevent 
Violence.
    CCR will provide resources for communities to develop, 
implement and evaluate violence prevent programs in the 
following areas: intimate partner violence, youth violence, 
sexual assaults, suicide, child abuse, elder abuse and gang 
violence. The basic concept behind CCR is to engage the 
community itself in defining the problems and molding the 
solutions that are most likely to create genuine systemic 
change.
    At Metropolitan Family Services, we have experience in 
collaboration with local residents, service providers and 
business, religious and civic leaders. Our community 
development methods enable whole communities to respond to and 
solve complex social problems. Mr. Chairman, we ask that the 
subcommittee encourage the CDC to continue to explore CCR as a 
program concept.
    We also provide needy Chicago area adults, children and 
families with a comprehensive range of community based mental 
health services. We know from experience with emotionally 
disturbed children that early intervention, treatment, parent 
education and other supports to families make a difference in 
ameliorating more serious conditions in the future.
    With an early intervention approach in mind, Metropolitan 
Family Services has developed a model for identifying young 
children and families at risk for behavioral disturbance, 
mental illness, and substance abuse. The cutting edge model 
would bring behavioral health care services and other needed 
resources directly to families within an early childhood 
setting. The model seeks to support and empower parents to 
become the primary intervention agents for their own children.
    We ask that the subcommittee urge the Department of 
Education to consider demonstrating and evaluating such an 
early intervention model so that emotional and/or behavioral 
problems can be identified and dealt with early on.
    Finally, Mr. Chairman, we would like to bring the 
subcommittee's attention to a study by the National Alliance 
for Caregiving, which revealed that nearly one in every four 
households is involved in family caregiving to elderly 
relatives or friends. The present division of acute and long 
term care for the elderly is ineffective and costly, especially 
in responding to the needs of the elderly with chronic 
conditions.
    The current system also penalizes family involvement in the 
care of the elderly. We believe that a conscious effort should 
be directed toward the development of innovative family and 
community responses to the care of the elderly. We ask that the 
subcommittee encourage HCFA to work with community based 
organizations to create long term care systems that recognize 
the role of the family in caring for elderly relatives.
    Thank you for the opportunity to present this testimony 
again this year, and for the opportunity also to visit with you 
some months ago.
    [The prepared statement of Gerald Erickson follows:]


[Pages 1232 - 1241--The official Committee record contains additional material here.]



    Mr. Porter. I appreciated that opportunity, also. Mr. 
Erickson, you talked about the new violence prevention 
initiative that you're working on. How does that differ from 
what CDC has done in the past in this area?
    Mr. Erickson. The difference is that CDC currently does its 
program by age grouping. I think their interest in us and our 
interest in them goes to the fact that we work with the full 
continuum, so that we would be not only dealing with teen 
violence, but at the same time, elder abuse. We would involve 
the community in developing the solutions. Again, a kind of a 
bottom up approach. The violence, in a continuum in the 
community, rather than to take out difference pieces as is 
currently done.
    Mr. Porter. I'm very impressed with what Metropolitan 
Family Services is doing, not only in terms of making changes 
in peoples' lives who need the attention, need help, but also 
involving people throughout the Metropolitan area who care 
about one another in that process, and bringing a lot of 
private resources as well as public resources to bear on these 
problems.
    So you're doing a wonderful job, and we appreciate your 
coming here to testify.
    Mr. Erickson. Thank you very much.
    Mr. Porter. Thank you, sir.
                              ----------                              --
--------

                                         Tuesday, February 3, 1998.

                                WITNESS

MARY WOOLLEY, RESEARCH! AMERICA
    Mr. Porter. Mary Woolley, President, Research! America, to 
testify in behalf of Research! America.
    Mary, it's nice to see you.
    Ms. Woolley. Thank you, Mr. Porter.
    Chairman Porter, I'm Mary Woolley, President of Research! 
America, a national not for profit public education and 
advocacy alliance, dedicated to making medical and health 
research a much higher national priority. On behalf of our more 
than 350 members, individuals, academic institutions, 
corporations and voluntary health organizations, we thank you 
for your leadership when it comes to medical research. Medical 
research is a national issue, and it is also, as we have heard 
so persuasively this afternoon, a deeply personal issue that 
impacts every American.
    Research! America is proud to serve as a voice for citizens 
who are concerned about medical research. Since 1992, we have 
commissioned regular national and state based public opinion 
polls, and have regularly conducted focus groups to explore 
attitudes and identify citizen issues and concerns regarding 
research. What we have found is that all over the country, 
citizens place their trust in research and research-based 
organizations to make the discoveries that will translate hope 
into cures, preventions and treatments.
    We've also learned that citizens look to you and all our 
elected representatives to provide the resources to makethose 
discoveries possible.
    Along with the American Medical Association, whose house of 
delegates recently passed a resolution in favor of doubling the 
National Institutes of Health budget, and the Ad Hoc Group for 
Medical Research, whose eloquent statement calling for a 15 
percent increase this year in the NIH budget we heartily 
endorse, and the many other concerned organizations, Research! 
America is convinced that because we have invested and now have 
in place an army of gifted researchers, and because the 
opportunity in science is at an extraordinary level right now, 
now is indeed the time for a concerted effort to double the 
budget for the NIH over the next five years.
    With your leadership, we think this goal is attainable. The 
public supports this goal, as you can see on our poster here. 
This data is from our most recent poll, in which 61 percent of 
American citizens say they favor doubling medical research. 
Now, this poll was taken just about a year ago. But I am 
gratified to be able to announce here that just last month, 
January 1998, a Wall Street Journal-NBC national public opinion 
poll found that by better than a two to one margin, a little 
better than we saw in our poll, the actual numbers are 64 
percent favoring and 25 percent opposed, the public favors 
doubling the current NIH budget of $13 plus billion over a five 
year period.
    With the commitment of this subcommittee, accompanied if 
necessary by innovative additional funding mechanisms, doubling 
the NIH budget, we think, can become a reality. The public, in 
fact, is willing to contribute additional funds to make this 
possible. Research! America has tested several possible 
mechanisms for identifying additional monies to supplement 
appropriated dollars to accomplish the doubling goal.
    Among those, timely, in light of possible tobacco 
settlement, is our finding that about 63 percent of the public 
say that they would sign a petition to increase cigarette taxes 
to provide funding for medical research. You see that here. We 
believe that a similarly high percentage, or even higher, would 
agree with dedicating a portion of new taxes enacted in 
conjunction with a tobacco settlement, cigarette taxes.
    Now, so far, this is admittedly only an opinion, but later 
this month, our new polls will test citizens response to that 
very question. And I look forward to being able to advise you 
and all the members of the subcommittee of the results of those 
new polls.
    Another mechanism also in the realm of the hypothetical, 
but greatly hoped for in many quarters, involves a budget 
surplus. Citizen priorities for surplus generated dollars has 
been tested by many polls of late. When Lou Harris and 
Associates asked citizens this past November how they felt 
about money from a budget surplus being used for additional 
spending on current programs, 81 percent said they would 
support surplus dollars going to medical research.
    Now, based on our Research! America findings in polls and 
focus groups, there are just two other points I would like to 
emphasize concerning the decisions you and your colleagues will 
be making about research in this Congressional session. Both 
concern the fact that citizens do not want doubling of the 
budget of the National Institutes of Health to come at the 
expense of other health and science programs.
    Research! America polls show that citizens value prevention 
research, for example. It is not surprising that there is such 
strong interest in prevention research, since everyone would 
agree that the ultimate goal is to eradicate, not just 
ameliorate, dreaded diseases like cancer, AIDS, diabetes, heart 
disease and stroke.
    What is surprising is that funding support does not match 
the public's mandate. This public mandate translates to 
achieving stronger support for the Centers for Disease Control 
and Prevention and the Agency for Health Care Policy and 
Research in tandem, not instead of increasing support for the 
NIH.
    My final point is based on a finding from our polls that 
strongly supports Federal investment in scientific research of 
all kinds as conducted in universities. New ideas and 
breakthrough technologies in fields such as engineering, 
physics, mathematics and chemistry have been instrumental to 
progress in the life sciences in the past. And this important 
synergy must be nurtured as we move into the new millennium.
    Doubling the NIH budget in five years is the right first 
step to achieve the great promise of research. Doubling the NIH 
budget in five years would allow the 105th Congress to place 
its stamp on history, contributing in never before possible 
ways to the health and quality of life of Americans.
    In poll after poll, the message is clear that citizens back 
you and all our elected representatives when it comes to 
seizing the opportunity that science offers at this moment in 
our history. Nothing less than the health and well-being of my 
family and yours and that of every American is at stake. We put 
our trust in our elected representatives to make the 
investments it will take to hasten the day when we will speak 
of cancer, premature heart disease, AIDS, diabetes, and a host 
of other dreaded diseases, as finally conquered by American 
scientific know-how.
    Thank you.
    [The prepared statement of Mary Wolley follows:]


[Pages 1245 - 1258--The official Committee record contains additional material here.]



    Mr. Porter. That's a wonderful statement.
    Mary, what's the relationship between Research! America and 
the Ad Hoc Group for Biomedical Research?
    Ms. Woolley. We work very closely together, Mr. Chairman. 
The Ad Hoc Group has many members, almost the same membership 
as Research! America. The Ad Hoc Group carefully, every year, 
evaluates with the help of many scientists the potential for 
what can be accomplished in science, and makes a recommendation 
as to what the budget should provide for the science.
    What we do is test the citizenry's attitudes about using 
their public dollars in its support.
    Mr. Porter. If I can express something and you can evaluate 
this for what it's worth, I'm kind of surprised at the degree 
of opposition in your survey of 1996, that was about a third of 
the people who answered yes or no answered no. And you say 25 
percent now, what would be about a quarter in a more recent 
survey. I think I was even more surprised at the 34 percent who 
said they wouldn't use an increase in cigarette taxes or they 
wouldn't advocate for an increase in cigarette taxes to be used 
for biomedical research.
    I think we've got to work on these people.
    Ms. Woolley. You bet.
    Mr. Porter. I don't understand, especially the one on 
smoking. The degree of cost to society of nicotine addiction is 
huge. If there was ever a justified source in my mind, and I 
may differ from others, but in my mind for funding biomedical 
research, it's a tax on tobacco and tobacco products.
    So I'm surprised that the numbers are that high. I wonder 
if they, often our surveys stop before they get to the really 
significant questions. Okay, if you're opposed, why are you 
opposed? What is in your mind that leads you to that. Did you 
ask the further questions?
    Ms. Woolley. What we do is in our focus groups we go to the 
next level.
    Mr. Porter. You get that in focus groups.
    Ms. Woolley. It's difficult to do that in polls, because 
then you get into a lot of open-ended sampling that's hard to 
record and a lot of judgments have to be made about the 
recording.
    But in focus groups, negatives come from a lot of different 
directions. They come from feelings against the government in 
general, anything having to do with the government then becomes 
a negative for some people.
    But I think your point about the need to get to the people 
who are feeling negative is an important one. And through a 
program that we're operating called the 435 project, we're 
providing the tools and some assistance andmotivation to 
members of the scientific community to get out into their own local 
towns and surrounding areas and answer citizens' questions about 
research and make the case.
    Mr. Porter. Absolutely. I know you're doing this, and I 
think that is absolutely the way to go about it, face to face 
communications, and where you can't have that, op ed pieces or 
letters to the editor, something to have the scientific 
community make the case for research I think is very, very 
important to establishing that as a priority among the American 
people. Because after all, what we do here is just listen and 
respond to what people think back home.
    Ms. Woolley. Well, you can teach the rest of us a lot about 
communication, and we're trying to learn.
    Mr. Porter. Well, you're doing an excellent job. We thank 
you for all that you do and for coming here to testify today.
    [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]
                              ----------                              --
--------

                                         Tuesday, February 3, 1998.

                                WITNESS

JUDITH FLINK, THE COALITION OF HIGHER EDUCATION ASSISTANCE 
    ORGANIZATIONS
    Mr. Porter. Judith Flink, President, the Coalition of 
Higher Education Assistance Organizations, testifying in behalf 
of the Coalition.
    Ms. Flink. I'm the Director of Student Financial Services 
at the University of Illinois at Chicago, President of the 
Coalition of Higher Education Assistance Organizations, the 
wife of a high school teacher at Waukegan High School, but most 
importantly, a parent. It is an honor to appear before you 
today to present testimony regarding the importance of 
continued Federal support for the Federal Perkins loan program.
    As you know, the student body at UIC is rich with ethnic 
and cultural diversity. Of the 26,000 students at UIC, 74 
percent receive some form of Federal financial assistance. We 
have participated in the Perkins loan program since its 
establishment in 1958.
    Over 20,000 students have borrowed over $38 million. 
Nationally, $13 billion has been borrowed. Last year, our 
campus received $614,000 in funding from the Federal capital 
contribution, which we matched with $250,000, further expanding 
available Perkins funding.
    The Perkins program is a crucial resource for needy 
students. Mr. Chairman, in 1996, Perkins loans went to 
approximately 750,000 students at over 2,700 participating 
institutions. Furthermore, the 5 percent interest rates makes 
Perkins affordable for students with limited resources.
    The $135 million Federal capital contribution that was 
appropriated by Congress in fiscal year 1998, combined with 
other funding, leveraged over $1 billion in new loans for 
undergraduate and graduate students throughout our Nation. 
Approximately 77 percent of Perkins borrowers are from families 
with incomes of less than $42,000 per year, and 25 percent of 
these borrowers are from families with incomes below $24,000.
    Federal legislation places borrowing limits on guaranteed 
and direct loans, making the Perkins loan the vital gap filler 
for eligible low income students. Without Perkins, the 
alternative are limited to costly plus loans or private label 
loans, which are often unrealistic options for these students, 
because they require either creditworthiness or a co-signer.
    Every year, financial aid administrators are forced to tell 
thousands of eligible students that they cannot obtain a 
Federal Perkins loan because of insufficient funds on our 
campuses. The average loan of $1,500 is well below the 
statutory limits. These students, some of the neediest in the 
country, are forced to turn to more expensive borrowing 
options.
    For example, this year at UIC, we'll loan $3.9 million to 
over 1,800 students. However, we could loan to 3,600 students 
$7 million.
    Let's turn now to the charts. The first chart depicts the 
cost of attendance at a State university. As is typical of many 
Perkins borrowers, the student has need, but does not receive a 
maximum Pell Grant. The State grant is significant, and the 
student will work for Federal work study funds. However, she'll 
still need to borrow.
    The $2,625 represents the maximum amount of a subsidized 
Stafford Loan fund that is available to her. Her remaining 
unmet need of $3,000. In this situation, Mary could be awarded 
a $3,000 Perkins loan.
    The second chart compares the total cost to borrowers of 
various federally supported loan programs. As you can see, a 
$15,000 loan costs the students much more than its face value. 
However, the Perkins loan is the best economic option for the 
students to meet the cost of their education.
    In addition to the interest rate of 5 percent, Perkins 
loans offer students pursing degrees in teaching or other 
community service professions valued cancellation benefits. The 
Administration and other law makers including Representative 
Bill Paxton from New York have proposed new programs offering 
student loan forgiveness in exchange for teaching. The Perkins 
program is the logical program to serve as the basis for this 
initiative.
    Additional funding for the Perkins program would serve 
students' needs and would prove more cost effective than the 
creation of a new program or new benefits in existing programs.
    Most importantly, it would revitalize the original purpose 
behind the enactment of the Perkins loan program, providing low 
cost loans and a cash cancellation incentive to the future 
teachers of America.
    Since 1980, the purchasing power of the Perkins loan has 
eroded 90 percent relative to inflation. The Administration's 
fiscal year 1999 request of $60 million in new FCC funds, 
combined with $40 million from recaptured dollars in the 
program, will further this decline. COHEAO would like to 
request an increase in funding for the Perkins program to $200 
million in FCC. This increase will allow more schools to lend 
more money to more students and to begin to alter this negative 
trend.
    I appreciate having the opportunity to testify before you 
today on the importance of the Federal Perkins loan program. On 
behalf of UIC and COHEAO, and most importantly as a parent, I 
urge you to consider the legislative proposal I've discussed 
regarding this very important program. Keeping the Federal 
Perkins loan program strong is one way we can promote access to 
higher education.
    [The prepared statement of Judith Flink follows:]


[Pages 1262 - 1271--The official Committee record contains additional material here.]



    Mr. Porter. Are the interest figures you show up there 
today's figures?
    Ms. Flink. Yes. For instance, the spread between a Perkins 
loan and a Perkins loan, the Perkins is 5 and your subsidized 
loans are 8.25. Then it goes up from there.
    Mr. Porter. And the pluses, it represents sort of a market 
value today?
    Ms. Flink. To parents, yes.
    Mr. Porter. Right.
    Ms. Flink. It's the parent loan to undergraduates.
    Mr. Porter. There's a big difference between the plus loan, 
for example, and the Perkins, a huge difference.
    Ms. Flink. Yes. The Perkins loan is what we would really 
like to be giving to our neediest students, versus the more 
expensive options.
    Mr. Porter. Well, we thank you very much for testifying. 
Your husband teaches at Waukegan High School?
    Ms. Flink. Yes, he started two years ago.
    Mr. Porter. And where do you live?
    Ms. Flink. In Morton Grove, grew up in Northbrook.
    Mr. Porter. Oh, you're almost in my district. [Laughter.]
    I used to represent Morton Grove, but they took it away 
from me in 1982.
    Ms. Flink. But I was born in your district, and he teaches 
in your district.
    Mr. Porter. So in the morning you get up and go in opposite 
directions. You go south and he goes north.
    Ms. Flink. That's kind of why we ended up right where we 
are, 35 minutes either way.
    Mr. Porter. Oh, Morton Grove's a really nice community, and 
I'm sorry I don't have it any more. Well, we very much 
appreciate your testifying.
    Ms. Flink. Thank you very much.
                              ----------                              

                                         Tuesday, February 3, 1998.

                                WITNESS

JOYCE WESSEL RAEZER, NATIONAL MILITARY FAMILY ASSOCIATION
    Mr. Porter. Carl M. Kuttler, Jr., President, St. Petersburg 
Junior College, St. Petersburg, Florida, testifying in behalf 
of the college. Is Mr. Kuttler here? He apparently is not. If 
he arrives later, we will put him back in the rotation.
    Joyce Wessel Raezer, Educational Specialist for the 
Government Relations Department, testifying in behalf of the 
National Military Family Association.
    Ms. Raezer. Thank you for allowing us to be here today to 
speak on behalf of military families and military children.
    Mr. Chairman, NMFA and the families we represent are 
grateful to you and the subcommittee for your untiring efforts 
on behalf of military children and the Impact Aid program. We 
commend you and other Congressional supporters of Impact Aid 
for securing the fiscal year 1998 appropriation of $808 
million, an increase of $78 million over fiscal year 1997.
    Thank you for recognizing the importance of this program to 
the basic education of 500,000 military children and several 
million of their civilian classmates.
    Although the Federal Government has acknowledged its 
responsibility to provide Impact Aid the program has not been 
fully funded since 1970. Also, the level of funding has 
fluctuated from year to year, even with much appreciated 
Department of Defense supplemental funding for the most heavily 
impacted districts. Local and state taxpayers are bearing an 
increasingly larger part of the burden for Federal students.
    I must also note that a DOD supplement of $35 million was 
authorized for fiscal year 1998, but was not appropriated.
    Fiscal year 1998 Impact Aid appropriation was generous by 
the standards of previous years. We know this increase will 
enable districts educating military children to serve all their 
students more effectively. Because Impact Aid dollars are 
targeted where the Federal responsibility is the greatest under 
the law.
    Impact Aid goes directly to school districts, with no 
strings attached. The local community, the people who have the 
greatest stake in the quality of education in their schools, 
decides how these funds will best serve the needs of their 
students.
    Continued consistent funding at or near the authorized 
level will help these districts plan for the future and budget 
for special education, technology, transportation, programs to 
raise standards, and salaries high enough to keep quality 
teachers. Impact Aid helps these districts approach the level 
of educational opportunity available in non-impacted districts, 
even though they do not have the access to the same kind of tax 
base.
    Nothing is harder for the heavily impacted districts to 
fund than major construction and maintenance projects. 
Attachment A of my written testimony illustrates some typical 
construction needs. These districts often find it difficult to 
float bond issues or take advantage of states' offers of 
matching funds. They often must defer routine repairs and 
maintenance when they have to buy textbooks or computers or 
other new technology.
    But children need safe, structurally sound buildings in 
which to learn. School construction funding, especially for 
districts least able to raise money in their own communities, 
must be a priority. We are grateful for the high level of 
funding for fiscal year 1998 which allows continued impact aid 
for the Military B students, the children of military members 
living in the local civilian community. Large numbers of 
transient military children do have an impact on a district, 
even when their parents pay real estate taxes. Unless residing 
in a legal domicile, military members often do not pay many of 
the other taxes that States and localities use to fund 
education. Districts with transient populations need more staff 
to evaluate and quickly place children in appropriate 
educational programs, provide remedial help if necessary, and 
manage the flow of student records in and out of the district.
    We ask that you continue to recognize the Federal 
responsibility to provide funding for military children living 
off the Federal installation.
    Military families list education as one of their most 
important quality of life concerns. Military commanders know 
that worries over the education of their children affect the 
morale and retention of their personnel. In this age of 
increased accountability, military families hold their 
children's schools to a higher standard than any State does. We 
insist that schools prepare our children to enter school at our 
next assignment, no matter where in the world that might be, 
with the skills and knowledge necessary to succeed. Military 
families expect our children's schools to have the resources to 
meet that standard.
    School districts have accepted the responsibility to 
educate military children. The Federal Government must provide 
the resources it has promised to support that education.
    [The prepared statement of Joyce Wessel Raezer follows:]


[Pages 1275 - 1281--The official Committee record contains additional material here.]



    Mr. Porter. Mrs. Raezer, I couldn't agree more. It seems to 
me if there is anything that ought to be an entitlement in our 
system as something that the Federal Government is obligated to 
pay, rather than subject to appropriations each year, it's 
impact aid. Yet this is one that isn't an entitlement, and 
unfortunately one that most Members of Congress don't have. 
Maybe there are 120 or 125 Members that have impacted schools 
in their districts. That means there are 300 Members, let's 
say, that don't know anything about the program. It makes it 
very, very difficult to get the support that we need for the 
Federal Government to meet its obligation.
    I happen to have the largest primary naval training 
facility in the world in my district. I have a school in North 
Chicago, Illinois that is impacted just about 50 percent, and 
believe me, it is essential aid for that school system. If it 
wasn't there, the school system couldn't exist, to begin with.
    Also the point that you made about the impact on local 
taxpayers. If the Federal Government doesn't meet its 
obligations and responsibilities, local taxpayers get angry at 
the military families, who have nothing to do with it, and the 
kids who have nothing to do with it, and it creates the kind of 
situation that is very destructive of learning and good 
relationships between people and kids.
    So I think this is a very high priority. We've done our 
best to come closer to what the Federal Government ought to be 
paying and will continue to do our very best to put it at a 
high priority.
    Ms. Raezer. As I said, we do appreciate your efforts and 
your advocacy for this program.
    Mr. Porter. It's enlightened self-interest in my case.
    Ms. Raezer. Well, it is in ours, as well.
    [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]
                              ----------                              

                                         Tuesday, February 3, 1998.

                                WITNESS

FRANCIS J. DAVIS, JR., REFLEX SYMPATHETIC DYSTROPHY SYNDROME 
    ASSOCIATION OF AMERICA
    Mr. Porter. Francis J. Davis, Jr., Co-founder and President 
of Reflex Sympathetic Dystrophy Syndrome Association of 
America, testifying on behalf of the Association.
    Mr. Francis Davis. Good afternoon, Chairman Porter, ladies 
and gentlemen. I am here on behalf of the efforts of a Ms. 
Donna Feldman, one of your constituents from Deerfield, 
Illinois. Again, I am President of Reflex Sympathetic Dystrophy 
Syndrome Association of America. We are a national organization 
with over 2,000 members, in every State of the Union, and I am 
also speaking for the estimated 6 million to 10 million 
sufferers of this debilitating disease.
    My mission is to request that you consider inclusion of 
this dread disease into the rolls of the Social Security Act. 
Reflex Sympathetic Dystrophy, which we'll call RSD from here 
in, is a debilitating disease that presents the following 
trauma. It was originally described in the 1850s by a Doctor 
Weir Mitchell while treating Civil War soldiers. Dr. Mitchell 
noticed that many were not responding to treatment following 
gunshot wounds. Even today, RSD is often misdiagnosed and many 
of its patients are accused of being fakes, as they suffer from 
excruciating pain.
    While medical advancements abound, RSD goes waiting for 
protocols, diagnoses, and treatment. While many RSD patients 
are diagnosed and treated and respond successfully, just as 
many go through the four stages of this disease and become 
dependent on the system. It is these fellow sufferers that I 
represent today.
    RSD, a disease of the autonomic nervous system, is a 
significant cause of chronic pain. It can arise as a result of 
injury or illness, but can become a primary illness in itself. 
It is a poorly understood dysfunction of the nervous system and 
it usually occurs after surgery or injury. The injury may not 
be apparent, such as a heart attack, repetitive stress, or a 
minor fall. The most significant onset characteristic is the 
patient's experience of burning pain, swelling, and loss of 
motor function, far out of proportion to the physical findings. 
Skin changes, muscle spasms, tremor, or atrophy can all be 
present. The pain is severe, said to be the worst pain humans 
can endure. RSD impairs memory and concentration. Also, the 
pain does not respond to conventional medications.
    A patient with advanced RSD cannot perform substantial 
gainful activity, including intellectual work, probably for the 
balance of their lives, and certainly for the 12 months 
required by the Social Security Act. An advanced RSD patient 
spends their day contemplating pain relief.
    Our members have waited an average of two to three years to 
achieve benefits from Social Security, far too long, as most of 
these Americans do not have alternate income. Many RSD patients 
have lost their homes while waiting for benefits that they 
justly deserve. Any expediency to the process greatly helps 
these sufferers.
    I humbly implore you to give this your consideration. These 
patients are only asking for their just due. These are proud 
Americans, formerly self-sufficient.
    Thank you, sir. Do you have any questions?
    [The prepared statement of Francis Davis follows:]


[Pages 1284 - 1285--The official Committee record contains additional material here.]



    Mr. Porter. I do.
    Mr. Davis, if I understand you correctly, your testimony 
aims at making this disease eligible for Social Security 
disability, is that correct?
    Mr. Francis Davis. That's correct.
    Mr. Porter. The difficulty is that this subcommittee has 
jurisdiction over Social Security only to the extent of its 
administrative expenses appropriation. The subject matter of a 
disability claim would have to be addressed, I would assume--
and the staff could correct me if I'm wrong--but addressed 
through Ways and Means, because the program is an entitlement. 
Therefore in our budget, while you'll see a line item for it, 
it would be there as a mandatory appropriation, the benefits 
themselves. So we really don't have jurisdiction over the 
subject matter. If you were talking about research, of course, 
we would, but not in the case of making this a recognized 
subject for disability benefits.
    Mr. Francis Davis. I see. I understand.
    Mr. Porter. So I'm afraid you're also going to have to 
testify before Ways and Means.
    Mr. Francis Davis. No problem.
    Mr. Porter. Thank you for being with us.
    [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]
                              ----------                              

                                         Tuesday, February 3, 1998.

                               WITNESSES

BRENDA HURST
WILLIAM DAVIS, AMERICAN VOCATIONAL ASSOCIATION
    Mr. Porter. Brenda Hurst, president of the American 
Vocational Association, accompanied by William Davis, Chief 
Executive Officer, Pulsar Data Systems, Inc., testifying on 
behalf of the American Vocational Association.
    Ms. Hurst and Mr. Davis.
    Ms. Hurst. Good afternoon, Mr. Chairman. I am Brenda Hurst. 
I am president of the American Vocational Association, and 
Special Populations Coordinator at Dobyns-Bennett High School 
in Kingsport, Tennessee. On behalf of AVA's 38,000 members, 
thank you for allowing us to be here today.
    To succeed in a technological workplace, students need 
academic and technical skills that are provided together 
through vocational-technical education. We serve high school 
students, post-secondary students, as well as welfare 
recipients and college graduates seeking the academic and 
technical skills they need to achieve their careers.
    To serve our students better, AVA has established a 
National Business Education Partnership. We're working with 
such partners as Microsoft, McDonalds, General Motors, Ohio 
State University, to help ensure a highly skilled workforce and 
maintain a globally competitive economy.
    We are so proud that one of our partners, Bill Davis of 
Pulsar Data Systems, is here with us today to discuss the 
importance of vocational education.
    Federal support for vocational-technical education provides 
critical funding for program improvement at the local level. 
Therefore, AVA respectfully requests at least a 10 percent 
increase in funding for vocational-technical education.
    Thank you, and with your permission, I will turn the 
remainder of my time over to Mr. Davis.
    Mr. William Davis. Good afternoon, Mr. Chairman. It's an 
honor to be here today. I am founder, president, and CEO of 
Pulsar Data Systems, an information technology company 
headquartered in Lanham, Maryland, in Congressman Hoyer's 
district. Pulsar has 180 employees and has an additional office 
in Congressman Bonilla's home town of San Antonio, Texas. We 
have been recognized by USA Today as one of the top black-owned 
industrial services companies. We also have been recognized 
locally as one of the fastest growing companies in the D.C. 
area. In fact, we are now the fifth largest minority-owned 
company in the U.S.
    The success of my business depends on a number of factors, 
but none so important as the quality of the workforce. 
Education is, in a very real sense, a business partner of mine. 
I want this to be a healthy and prosperous partnership for all 
involved.
    What is being taught in schools must be relevant to 
opportunities in the workforce. We are working with AVA to meet 
the top challenges of a rapidly changing workplace and address 
the needs of students with varied career goals. Leadership is 
critical at this juncture because we have serious shortages of 
skilled workers in America. More than 190,000 IT jobs are 
unfilled today because of a lack of qualified applicants. We 
need software engineers with advanced degrees, but we also need 
technicians.
    In many industries there are thousands of highly paid jobs 
for people with a combination of academics and technical 
skills. I applaud AVA support of policies that strengthen the 
academics taught in vocational-technical education. Watered-
down courses will no longer suffice.
    At the same time, we must also strengthen the technical 
focus of these programs. Without technical skills, students 
will not be qualified for the jobs of today or tomorrow. For 
those who go straight to work after high school, this type of 
education could not be more important.
    Our shortage of skilled workers is startling, yet it 
reveals incredible opportunities for today's youth if they have 
the right kind of education. Pulsar's future is tied directly 
to America's students, and we are continually looking for ways 
to help them create their own future success.
    In partnership with AVA, Pulsar is working to provide the 
latest IT solutions to vocational-technical schools across the 
Nation. In return, Pulsar has established a scholarship fund 
for students and teachers. These scholarships will provide 
incentives for students to pursue the educational pathways 
needed to enter the IT field, and will provide teachers with 
the training that they need to deliver academic and technical 
skills to our future workforce.
    This effort holds much promise, but we cannot do it alone. 
We hope other companies will join with us as this effort grows, 
and we hope that the Federal Government will recognize its 
continued role in supporting vocational-technical education. 
Congress should view this not as an expense, but rather as an 
investment.
    On behalf of my company, and with a strong personal 
conviction, I urge you to support AVA's requested increase for 
vocational-technical education. This program sparks in 
countless students the drive to stay in school and pursue 
further learning. Vocational-technical education gives industry 
the key to our prosperity, competent and skilled workers, and 
it creates for our Nation its individual citizens' greater hope 
for a bright future.
    Again, thank you for this unique opportunity. I also want 
to thank AVA for sharing its few moments of time here with me 
today. I would also be happy to answer any questions.
    [The prepared statements of Brenda Hurst and William W. 
Davis, Sr., follows:]


[Pages 1289 - 1302--The official Committee record contains additional material here.]



    Mr. Porter. My question is, how come you don't have a 
facility in my district? [Laughter.]
    Mr. William Davis. We do work in Chicago with a minority-
owned company, Nexus Unlimited.
    Mr. Porter. We would welcome you.
    This is a question for either one of you or both. Is there 
overlap between vocational education and school-to-work 
programs?
    Ms. Hurst. There should not be. I would not sit here and 
tell you what every school district is doing. If the school-to-
work program is operating as Congress had intended it to 
operate across our country, there should be no overlap of the 
program.
    Mr. Porter. Okay. Where do they leave off and you take up, 
or vice versa?
    Ms. Hurst. In most school districts I think we will find 
that the school-to-work programs, school-to-career, education 
edge, whatever school districts are preferring to call their 
program, it is across the board for all K-12 students. It is 
exploratory. There's a lot of job-shadowing. It's mentoring. 
It's an awareness program for all students. It's not a 
dictatorial program; neither is vocational education. There is 
a belief among those that in a school-to-work program people 
are being told what careers they should go into for the 
remainder of their lives. For example, yesterday was National 
Job Shadowing Day. Many students across this country had the 
opportunity to select from a number of employers, a number of 
professions, and go into the business with a professional on an 
exploratory basis, in a limited amount of time, to follow them 
around and to shadow them for that day, to see what their jobs 
are like.
    So it's really an awareness program.
    Mr. Porter. So it's more of a career awareness, opportunity 
awareness kind of thing?
    Ms. Hurst. Yes, for all K-12.
    Mr. Porter. Right. Right. Okay.
    Ms. Hurst. And even in the elementary schools you may have 
a program where you're studying what a particular bacteria is, 
and then a teacher would get into exploring what kind of jobs 
you would have available in this country if this is what you 
were doing, what courses you would have to take, what academics 
would you need, what skills, how much college work, etc.
    Mr. Porter. This morning we had Lynne Cheney in to testify, 
the wife of our former colleague, Dick Cheney, who herself has 
a very exemplary public career. She testified on behalf of the 
American Enterprise Institute, Mr. Davis, that we are tending 
to push kids way too early into career paths, and not giving 
them the kind of broad education that makesthem happier human 
beings in the long term, better citizens, and the like.
    Do you have any comment on that?
    Mr. William Davis. My only comment would be that I have 
five children; my youngest is 23. I would like to think that 
they've had choices as opposed to being pushed. They've been 
able to look at alternatives, not because of anything that I 
have or don't have, but more in line with how they themselves 
are influenced by peers and by others in terms of what's 
available.
    So I don't think we push too early. I think what we should 
be doing more of is giving the kids and students--we do a lot 
in K-12 from a standpoint of laboratories and the like, 
computer labs, and installing them and supporting them--I think 
they should have the opportunity to see what's available so 
that as they start making those decisions, whether they want to 
be a fireman or want to be a computer expert, they should have 
that choice earlier to really start pursuing it earlier, if 
that's what they choose, or at least to see what's available.
    Mr. Porter. I want to thank you both very much for coming 
to testify. Thank you so much. I learned a lot.
                              ----------                              

                                         Tuesday, February 3, 1998.

                                WITNESS

PHILIP FURMANSKI, NEW YORK UNIVERSITY
    Mr. Porter. Dr. Philip Furmanski, Dean, Faculty of Arts and 
Science, Chairman and Professor, Department of Biology, New 
York University, testifying on behalf of the university.
    Dr. Furmanski.
    Mr. Furmanski. Thank you, Mr. Chairman. My name is Philip 
Furmanski and I am speaking on behalf of New York University as 
Dean of its Faculty of Arts and Science. I appreciate this 
opportunity to discuss a scientific project which addresses 
this committee's programmatic and research priorities. We 
applaud the committee's emphasis in last year's appropriations 
measure for the Federal Government to support ``research in the 
area of brain development, mechanisms that underlie learning 
and memory, the acquisition and storage of information in the 
nervous system, and the neural processes underlying emotional 
memories as they relate to intellectual development and 
cognitive growth.''
    We believe that such a national investment into research on 
the mind and brain will repay itself many times over. To help 
implement the committee's goal, NYU is undertaking to establish 
a Center for Cognition, Learning, Emotion and Memory. This 
center will conduct research along a new paradigm that will 
push the frontiers of understanding of how the brain develops 
and functions, and how aging and brain disorders can erode our 
ability to learn, think, remember, and mature as productive 
members of family and society.
    In addition, the center will help train the next generation 
of interdisciplinary brain scientists.
    To establish this interdisciplinary center, NYU is seeking 
support to expand research programs, attract investigators from 
the disparate disciplines that are required, and provide the 
technical resources that are necessary to create a premiere 
world-class scientific enterprise.
    As you know, traditional funding sources cannot underwrite 
the establishment of a new cross-disciplinary area of 
scientific study, particularly one that includes research and 
teaching and reaches across fields as diverse as biomedicine, 
psychology, education, computer science, and cognitive science.
    The research in this center will have enormous implications 
for education, health care, and job training. As one example, 
research on attention and retention will be useful in designing 
programs for early childhood intervention. The center's 
research will help us better understand how children learn at 
different stages with different cognitive styles; how parents 
and teachers can accommodate these styles; and how educational 
technology can be harnessed to stimulate interest in increased 
retention.
    The research need is clear. Many educational reforms are 
being introduced as we speak without the advantage of an 
understanding of some fundamental processes that lead to 
learning.
    Second, our research will investigate how memory is altered 
by aging and by diseases like Alzheimer's, and how biological 
malfunctions in the educational and emotional system can cause 
disorders like phobias, panic attacks, and post-traumatic 
stress. Research into the biology of fear will help us 
understand the origin of our emotions, how emotional conditions 
arise, why are they so hard to control, and ultimately how we 
can prevent and treat emotional disorders.
    Finally, research on cognition will impact adult learning 
and job training programs and help rationalize the way we train 
new workers or retrain workers in emerging new technologies.
    New York University is well positioned to create and 
operate this major national cross-disciplinary research and 
training center. The largest private university in the United 
States, with over 49,000 students and 13 schools, NYU has 
outstanding researchers and well-established strengths in 
neurobiology, cognitive science, neuromagnetism, behavioral 
neuroscience, educational psychology, mathematical modeling, 
and computer simulation. With these strengths, NYU can create a 
distinctive center that will produce a new understanding of the 
brain and new ways of using that knowledge to improve human 
health and welfare. Our faculty are already widely recognized 
for their research on memory, learning, motivation, and 
language acquisition, and NYU is internationally known for its 
studies in vision, a key input to learning.
    NYU is the leader in new studies on the biological basis of 
emotion. These studies have important implications for learning 
and memory and control certain harmful emotional states.
    As we complete the ``decade of the brain,'' NYU, through 
this new center, is poised for leadership in accomplishing the 
aims of this important initiative and the goals central to 
national priorities. I believe that we are in a special 
situation among universities to bring these strengths in so 
many varied disciplines together to attack these crucial 
issues, and then to disseminate the results for the benefit of 
the American people.
    Mr. Chairman, this concludes my testimony. I thank you for 
the opportunity to appear before you today. Also let me add my 
appreciation as a researcher and an NIH grantee on behalf of 
all the American people for your leadership in biomedicine in 
this country.
    [The prepared statement of Philip Furmanski follows:]


[Pages 1306 - 1314--The official Committee record contains additional material here.]



    Mr. Porter. Dr. Furmanski, let me thank you for coming to 
testify on such an important subject.
    You might be aware that we had Dr. John Sarnow of the New 
York University Medical Center up to testify last fall, a 
special panel that we convened on the ``mind-body connection,'' 
for want of a better term, which is not the subject that you're 
testifying about, but related in a way. He did an excellent job 
in representing the university, as you have done today, so we 
thank both of you. Thank you for being with us.
    Mr. Furmanski. Thank you very much.
                              ----------                              

                                         Tuesday, February 3, 1998.

                                WITNESS

DR. JULES HIRSCH, M.D., AMERICAN SOCIETY FOR CLINICAL NUTRITION
    Mr. Porter. Dr. Jules Hirsch, M.D., Past President and 
Public Affairs Committee Member, Rockefeller University, New 
York, testifying on behalf of the American Society for Clinical 
Nutrition.
    Dr. Hirsch, good to see you.
    Dr. Hirsch. Thank you very much, Mr. Porter, for the 
privilege of appearing here this afternoon. As you have stated, 
I am Jules Hirsch, a research physician and professor at 
Rockefeller University. For a number of years I served as the 
physician in chief of the hospital at the university, and today 
I represent the American Society for Clinical Nutrition.
    I must say very feelingfully and completely truthfully at 
the outset that there isn't a member of this large American 
Society of Clinical Nutrition that we have that isn't 
extraordinarily grateful to you personally for your 
championship of the NIH over what we considered were going to 
be very lean years, and indeed were lean, but nevertheless were 
sufficiently well-supported by you and your colleagues to keep 
the scientific establishment going.
    We have a very unusual mission. It's the mission of 
expanding nutritional sciences and the understanding of 
nutrition sufficiently to make this useful as a technique of 
prevention of disease, health promotion, and in many instances, 
treatment of disease. But we have a problem, and what I want to 
tell you about very briefly this afternoon is the specific 
problem that we have. It is more fully documented in the 
written testimony that you will receive, but let me do this in 
just a very brief fashion.
    Let me begin by pointing out something that we all know but 
maybe we should emphasize. We live in a very remarkable moment 
in the history of biologic science. In great measure this comes 
about because of what NIH and the support of this committee and 
the previous committee individuals have supported. We now know 
the blueprint for the structure of living cells, encoded in 
DNA, and that single piece of information has put biologic 
science on a footing that it has never had in the past. But 
what is happening with this is somewhat reminiscent of what 
goes on with computer science and computer information. Things 
are moving so very, very quickly that from week to week new and 
extraordinary events are occurring in how this information is 
processed and contained within the cell. It began some years 
ago by getting chunks of the pieces of information, the genes, 
and understanding their aberrations and relationship to 
specific diseases by studying people with the diseases, and 
normal members of their own pedigree, and putting this 
together.
    Now a really astonishing thing is just on the horizon, and 
that is the possibility that on something akin to a computer 
chip we will have the entire human genome--not of all people, 
but specifically of each individual, so that as though you were 
going to the physician to get a Smack-20 and find out what your 
blood sugar is and your sodium and this and that, now you're 
going to get a piece of information in the very near future of 
your entire genome, the total blueprint with which you were 
born that sets the stage for human individuality.
    Now, we know that these genomes are very different from 
person to person and, except with identical twins, they are 
what makes for biological variability. What then happens is 
that this genome is expressed over time by virtue of the 
chemical environment in which we live that makes us, finally, 
the individuals that we are.
    Now, the most important aspect of that environment, and in 
its chemistry, is nutrition, because the materials that we eat 
bathe these cells and guide the pathway toward growth and 
development.
    So to put this wonderful new information of molecular 
genetics to work so as to optimize health and to prevent 
disease, we need as much understanding of the variability of 
physiologic and biochemical processes and how they respond to 
illness as we do to the nucleotide codes. In other words, we 
are born with a blueprint, but that is not ultimate destiny. We 
are not imprisoned in that forever. There is the opportunity of 
growth and development, and we must understand how this works, 
and nutrition figures very prominently in all of this.
    What we need now are scientists who study subsets of people 
who are either alike or not like each other in terms of 
physiology, susceptibility to illness, response to foodstuffs, 
so we learn not only what is unique about their DNA but, most 
importantly, contrariwise, why--with a given DNA constitution--
they turned out so differently from each other.
    So at last we are beginning to think of a synthesis, an 
integrated biology, in which DNA structure is not the ultimate 
and exclusive determinant force which places us in an 
inevitable chain of development and disease or health, but 
rather a rich source of chemical understanding to be tapped and 
understood and known as to what makes us the individuals that 
we are.
    Regrettably, and here is the problem, as this new 
information rushes headlong into these deep levels of 
comprehension, the understanding of man in terms of response to 
environment and in terms of susceptibility to disease is not as 
much developed as molecular genetics. It is very likely that 
diseases such as diabetes and cancer, which have genetic 
determinants, may not be the result of a single gene defect, 
but rather very subtle alterations in the functioning of many 
genes, then acted upon by our nutritional environment.
    We have a scarcity----
    Mr. Porter. Dr. Hirsch, I am sorry to have to interrupt. I 
have a meeting I must go to at 4:00 o'clock and I'm going to 
ask Mr. Dickey to take the chair, and then you can proceed.
    Dr. Hirsch. Thank you.
    Here, Mr. Dickey, is where our problem is. We have a 
scarcity of the clinical scientists who can help us understand 
disease and the operation of the body at this level of 
integration. Such scientists must, on the one hand, be able to 
reach back and make use of the fundamental molecular genetic 
map that exists in each individual, but also must include 
research physicians who can evaluate the entire organism for 
the ultimate environmental and nutritional interactions that 
create an illness or a wellness.
    The ranks of these clinical investigators have 
beendecimated at NIH and across the Nation. The reason for this is that 
our brightest young physicians are driven, on the one hand, into the 
depths of molecular genetics, or on the other hand, into the all-
important delivery of health care. And this middle ground of clinical 
research is disappearing.
    Often we are confounded by newspaper reports of ``eat 
fat,'' ``don't eat fat,'' ``more cholesterol,'' ``less 
cholesterol.'' The public gets totally confused. These reports 
are all true; they are basically correct. The issue is that 
they are a single recipe, a single prescription for all human 
beings, and human beings are extraordinarily different, and it 
is the business of nutrition and clinical nutritional science 
to give us the prescriptions for each of us, person by person, 
from the understanding that comes at this kind of level.
    Mr. Dickey [assuming chair]. Dr. Hirsch, let me ask you a 
question.
    Would you concede that good health could be the object of 
monetary incentives?
    Dr. Hirsch. Yes.
    Mr. Dickey. Have you ever seen it work, or seen it being 
applied?
    Dr. Hirsch. That good health can--can you give me a----
    Mr. Dickey. Well, let's just say--you're talking about 
nutrition, but let's just say we're talking about the loss of 
weight. You can do that through proper nutrition. Have you ever 
seen a program that paid people to lose weight?
    Dr. Hirsch. Yes. As a matter of fact, there have been such 
programs, with relatively minor degrees of success, I must say, 
over the long run, the reason being that a lot of the 
fundamental biology of obesity has not been that well 
understood. It is this kind of nutritional science that can 
make the difference for it.
    But in the short run, there have been programs--engineered, 
for example, at the University of Pennsylvania and some other 
places that come to mind--in which, at least in the short run, 
it works.
    Mr. Dickey. Okay, let me ask it another way, then. How can 
we encourage people to want to take better care of themselves?
    Dr. Hirsch. By understanding the ways in which they have 
come to do a bad job, because the wrong nutrition that we often 
practice comes about by virtue of developmental and biologic 
events. So for example, children, very early in their 
development, get set up into certain patterns of food intake 
and behavior that become increasingly difficult to deviate 
from. So what we need is understanding of how people have come 
this way. We've become very disenchanted by lecturing to people 
about nutrition and trying to have them change their diets. 
Although some of this has happened, all too little has 
happened.
    So more biologic understanding is required. When I began in 
the obesity research area, which is my area, it was thought to 
be exclusively a psychological personal matter. We now know 
that that's not true. There are fundamental and important 
biologic determinants that are also at work in this about which 
we need to know even more.
    Mr. Dickey. I think your time has expired.
    Dr. Hirsch. My last request is that--we have the mechanisms 
within NIH for supporting this, but what we need is support 
specifically of the clinical nutrition research units which tie 
this information together. And what our organization requests 
is your attention to the further funding of these clinical 
nutrition research units at NIH, and the full details are in 
the testimony.
    Mr. Dickey. Thank you, Dr. Hirsch.
    Could you give your office number to that lady right there, 
Ms. Galloway, please?
    Dr. Hirsch. I'd be delighted to.
    Mr. Dickey. All right. Thank you very much for the time and 
your commitment.
    [The prepared statement of Jules Hirsch, M.D., follows:]


[Pages 1319 - 1331--The official Committee record contains additional material here.]



                                         Tuesday, February 3, 1998.

                                WITNESS

DR. KENNETH M. VISTE, JR., M.D., AMERICAN ACADEMY OF NEUROLOGY
    Mr. Dickey. Next we have Dr. Kenneth Viste, Jr., Immediate 
Past President, American Academy of Neurology, from Oshkosh, 
Wisconsin. Did you fly in here?
    Dr. Viste. Yes, right down the road from Green Bay.
    Mr. Dickey. I've been to Oshkosh. My neck was constantly 
looking up because of the flights coming in.
    Dr. Viste. I live right down the runway from it.
    Mr. Dickey. Do you really?
    Dr. Viste. Yes.
    Mr. Dickey. It's unbelievable.
    The American Academy of Neurology. You have five minutes.
    Dr. Viste. Thank you very much, Mr. Dickey. It's a pleasure 
being here today. My name is Ken Viste, Immediate Past 
President of the Academy of Neurology, Past Chair of 
Legislation for the AMA, and I currently chair the HCFA 
Practicing Physicians Advisory Council. I am testifying today 
on behalf of the Academy of Neurology, a medical and scientific 
society representing some 15,000 neurologists and 
neuroscientists, and on behalf of patients with neurologic 
conditions.
    My testimony will focus on needs in the areas of research 
related to the brain and conditions involving the brain.
    It is estimated that at least 50 million individuals suffer 
from some disorder relating to the brain. I shall not go into 
all the numbers, but suffice it to say it is a very expensive 
proposition, both in terms of monetary means, as well as the 
human impact.
    In my training at Northwestern, neurology was originally 
thought to be a specialty where it was ``diagnose, and adios.'' 
We really could do a very good job of diagnosing people--not as 
good as now, perhaps--but we really had very little in the way 
of treatment.
    Fortunately, this has all changed. In the Nation, 
particularly those who practice neurology have the Congress and 
particularly this subcommittee and the NIH to thank for this. 
There are now many useful and exciting developments related to 
the treatment of neurologic conditions. Last year, Dr. Zach 
Hall of NINDS spoke of these breakthroughs in his testimony 
here.
    An expanded research budget for fiscal year 1999 will 
assist in carrying forward these clinical initiatives.
    Mr. Dickey. Excuse me. What is the most common diagnosis in 
your field?
    Dr. Viste. Headache.
    Mr. Dickey. Interesting. Thank you.
    Dr. Viste. The Academy of Neurology would hope that the NIH 
budget can be doubled in the next five years. For fiscal year 
1999 we would like to see a 15 percent increase for NIH as a 
whole. In particular, we recommend that the budget of NINDS and 
the budget for brain research through NIH double over the next 
five years and be increased to 15 percent in fiscal year 1999. 
We believe this expansion should emphasize clinical research, 
given the many opportunities that now exist.
    There should also be a commensurate increase in the 
research management and support budget of NINDS to enable it to 
effectively manage its initiatives.
    Within these increases there are a number of specific 
initiatives we endorse.
    First, we support the recently announced Alzheimer's 
Disease Prevention Initiative, which calls for an increase in 
research funding there of some $100 million in fiscal year 
1999. A principal focus of the initiative will be on 
multicenter clinical research and trials.
    Secondly, we support initiatives included in the 
MorrisUdall legislation on Parkinson's Disease.
    Third, we support the initiative begun in 1998 to expand 
the research, prevention, and services in brain injury, 
including clinical research on treatment and rehabilitation 
related to brain injury.
    Finally, stroke research and education is a major priority 
for our academy and is an area of dramatic achievement. We 
support the Heart and Stroke Coalition recommendations for 
stroke research expansion.
    As far as stroke research goes, I think you are aware of a 
new breakthrough in this past year, t-PA, a clot-buster, 
something that has been very important in the treatment of 
heart attacks, but the advent of reversing strokes is now upon 
us. This is largely through efforts and research of NINDS. 
NINDS has launched a consortium of all the major interest 
groups in really trying to bring and elevate, through public 
education and professional education, brain attack to the same 
level as heart attack, and I think we applaud the efforts of 
NINDS. We certainly believe they need the resources to continue 
this effort, to bring the fruits of this very excellent 
research and trials to general use in the hopes of decreasing 
the burden on society of stroke. Certainly we need to do a 
great deal more in this area, given the 400,000 people a year 
that are affected by stroke.
    In terms of Alzheimer's Disease, there is evidence that 
Vitamin E, or even ibuprofen, may help people not get 
Alzheimer's Disease.
    Mr. Dickey. In what quantities?
    Dr. Viste. Probably 400 milligrams, four times a day.
    Mr. Dickey. Of each?
    Dr. Viste. No, no, of ibuprofen. Of Vitamin E, 600 units a 
couple times a day.
    Mr. Dickey. I forgot what you just said. Say it again.
    Tell me this. Are there any side effects?
    Dr. Viste. The ibuprofen could give you a gastric ulcer.
    Mr. Dickey. Okay.
    Dr. Viste. Vitamin E, probably not, and it's particularly 
good for potency, as well. That's the main use.
    Mr. Dickey. Please. This is Washington. We can't talk about 
those things anymore. [Laughter.]
    Dr. Viste. Okay. In terms of Parkinson's Disease, we 
support the Morris Udall initiatives. Certainly, scientists in 
the last year have discovered the gene that causes some forms 
of Parkinson's Disease, and certainly we support the efforts of 
the Parkinson's Disease organizations in establishing centers 
of expertise in this area.
    Another condition is multiple sclerosis. There is growing 
evidence that there are viral triggers that set off multiple 
sclerosis. We support the National Multiple Sclerosis Society 
in recommending increased research funding in these areas of 
opportunity for this disease.
    Likewise, for epilepsy, there is a great need, looking at 
seizures in childhood, special problems with epilepsy among 
women, and anti-epilepsy drug development.
    Likewise, in traumatic brain injury, there is a great deal 
of opportunity to decrease the burden of traumatic brain and 
spinal cord injury with appropriate clinical trials.
    In summary, we believe that there should be a priority at 
this time for clinical research, that an increased emphasis in 
this area really offers great opportunities to improve the 
health of this country.
    Concomitant with this, there are two new initiatives that I 
should really call attention to: a clinical trial pilot grant 
program, and a clinical trial planning grant program. In other 
words, if we're going to move into this area, it is incumbent 
that we have programs to help people go about doing it 
correctly so as to marshall and use our monies as effectively 
as we can.
    I thank you for your attention and suggestions, and would 
answer any questions you might have.
    [The prepared statement of Kenneth Viste, Jr., M.D., 
follows:]


[Pages 1335 - 1352--The official Committee record contains additional material here.]



    Mr. Dickey. I've asked them all. Thank you, Dr. Viste. Good 
job.
                              ----------                              

                                         Tuesday, February 3, 1998.

                                WITNESS

DAVID RHODES, ASSOCIATION OF INDEPENDENT COLLEGES OF ART AND DESIGN
    Mr. Dickey. Next we have Dr. David Rhodes, president of the 
School of Visual Arts, Association of Independent Colleges of 
Art and Design.
    Mr. Rhodes. Mr. Dickey, thank you for this opportunity to 
testify.
    Mr. Dickey. Is it Dr. Rhodes or Mr. Rhodes?
    Mr. Rhodes. Just David.
    Mr. Dickey. Hi, David.
    Mr. Rhodes. My name is David Rhodes and I'm president of 
the School of Visual Arts in New York City. I am before you 
today on behalf of the Association of Independent Colleges of 
Art and Design, AICAD, which is a consortium of 32 institutions 
that educate more than 30,000 students annually at the 
collegiate level from all 50 States and more than 70 foreign 
countries.
    We believe that support for art and design education is a 
sound investment in the quality of American life.
    It is a privilege to appear before the subcommittee to 
discuss support for arts education for children in public 
schools. In 1994, Congress passed and the President signed the 
Improving America's Schools Act of 1994. Under Title X, Part D, 
Arts in Education, the program authorized a program called 
``Cultural Partnerships for At-Risk Children and Youth.'' AICAD 
was proud to be associated with the legislation, which 
encourages community involvement by colleges and other cultural 
institutions to promote the arts for children in poverty-
stricken neighborhoods. AICAD played a major role in the 
adoption of this particular provision.
    In 1996, the President's Committee on the Arts and the 
Humanities published a report entitled ``Coming Up Taller'' in 
which they documented the importance of arts programs to the 
intellectual development of children, especially for children 
in high-risk neighborhoods with few cultural opportunities. The 
report found that ``Community arts and humanities programs 
provide crucial building blocks for children's healthy 
development.''
    A study by the Port Authority of New York and New Jersey 
found that the arts and other cultural activities account for 
at least $9.8 billion a year of economic activity in the New 
York metropolitan area, and directly and indirectly support 
more than 107,000 jobs. While the arts experienced a boom 
during the 1980s, the subsequent bust in the 1990s widened the 
gap between the cultural haves and have-nots.
    The Federal Government has invested in elementary and 
secondary education when it has been in the perceived national 
interest to do so. For more than 30 years it has supported 
those groups that have been historically unserved or 
underserved, the poor, the disabled, and those with limited 
English proficiency. As the President's committee has 
demonstrated, the arts have the ability to help children 
overcome these initial disadvantages.
    In addition, many children don't do well in the traditional 
classroom setting, where rote learning is the key to success. 
Without access to the arts, these young people are being short-
changed. The real tragedy is that we're failing to take note of 
what art can do for children by enhancing their creative 
ability to grasp abstract concepts. In addition, we are failing 
to equip our children for economic opportunities where the 
economy is expanding and real jobs exist. This is especially 
true in New York, but it is also the case in Philadelphia, 
Baltimore, Chicago, L.A., D.C., and almost any major urban area 
where arts-related jobs are plentiful and positions for those 
with a serious arts education often remain unfilled.
    Therefore we ask that the subcommittee fund the Cultural 
Partnerships Program and other programs which encourage 
colleges and other cultural institutions to work with at-risk 
children through the public schools.
    Mr. Dickey. Excuse me. What connection does 
thisappropriation have with the National Endowment for the Arts?
    Mr. Rhodes. None. The National Endowment for the Arts has 
very little to do with education to begin with, although they 
have a program that was enacted by Congress for them to do 
exactly that. That program was never funded. They have very 
little programmatic activity within the public schools. This 
would be separate from and clearly in addition to--and 
actually, it doesn't appear that the Endowment's mission covers 
this activity with respect to public schools.
    Mr. Dickey. Okay. Thank you.
    Mr. Rhodes. As you know, this program also lends itself to 
distance learning partnerships for communities with sparse 
cultural resources, which makes it appropriate for rural 
communities also. Thus these programs, if funded, can enhance 
the opportunities for students to study the arts with all the 
attendant benefits, but to do so within a technological 
framework which will lead to a high degree of computer literacy 
and Internet sophistication.
    I would like to thank you for this opportunity to address 
you and I would be pleased to entertain any questions.
    [The prepared statement of David Rhodes follows:]


[Pages 1355 - 1358--The official Committee record contains additional material here.]



    Mr. Dickey. Who censors what the kids receive, as far as 
education is concerned?
    Mr. Rhodes. I'm sorry?
    Mr. Dickey. Is there any censorship that goes on with what 
the kids receive in their education in the visual arts?
    Mr. Rhodes. Yes. Good taste. In other words, what the kids 
receive has to be age-appropriate----
    Mr. Dickey. Who decides that?
    Mr. Rhodes. The teachers, generally. The teachers and 
parents. It's a local decision.
    Mr. Dickey. Okay. Now, is this the sort of thing where they 
are actually doing the work, where they are drawing things and 
painting things? Or are paintings brought to them and 
explained?
    Mr. Rhodes. We would urge that they actually do the drawing 
and painting, they actually do the exploration, rather than 
having a static representation of a painting of some note that 
is then declaimed upon by someone who is an aficionado or a 
historian.
    We believe that to do this they've got to get a little 
messy, maybe, and from that mess we think something good comes. 
By way of example, I'm sure you're familiar with cuisinart 
sticks?
    Mr. Dickey. No. I'm from Arkansas.
    Mr. Rhodes. They're small sticks that are used to teach 
mathematics.
    Mr. Dickey. Are you saying cuisinart?
    Mr. Rhodes. Yes, cuisinart. They are small sticks that are 
generally in units of one to ten, and they are used to teach 
mathematics to preschool children. And that activity, that 
hands-on nature, is what seems to work. I know it did wonders 
for my daughter when she was three.
    Mr. Dickey. Well, just in a nutshell and as your final 
statement, what is it that the visual arts give to our kids 
that they need?
    Mr. Rhodes. It gives them a sense of being able to create 
and master their own sets of problems, which are structured in 
such ways that they blend in with the regular curriculum, so 
that in fact the overall achievement is enhanced, and at the 
same time there is a sense of mastery that is gained rather 
more quickly than sometimes occurs in a more traditional 
setting.
    By way of example, in the Baltimore city high school system 
there is a specialized English magnet school, a specialized 
mathematics magnet school, and a specialized art magnet school. 
The board scores, as you might expect, in the city are highest 
in English in the English school, and highest in math in the 
math school. But the second highest in both categories is at 
the art school.
    Mr. Dickey. Interesting. Is that because of the confidence 
they receive?
    Mr. Rhodes. That's a large part of it.
    Mr. Dickey. The fulfillment of expression?
    Mr. Rhodes. They've got something that they really enjoy 
doing, so they're there every day. I run a program for at-risk 
kids that is funded by the State of New York, and one year, I'd 
like to say, I had better than 100 percent attendance because I 
had two kids that were expelled from the school that I was 
working with, attending that program in the summers every day. 
They were behavior problems in school, but not in my program.
    Mr. Dickey. Well, I saw that in the headlines of the New 
York Times. You always hear the good things, don't you, in the 
headlines?
    Mr. Rhodes. We try.
    Mr. Dickey. Thank you, sir.
    Mr. Rhodes. 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]
                              ----------                              

                                         Tuesday, February 3, 1998.

                                WITNESS

MICHAEL S. LANGAN, NATIONAL ORGANIZATION FOR RARE DISORDERS, INC.
    Mr. Dickey. Next we have Mr. Michael Langan, Vice President 
of Public Policy and Government Relations, National 
Organization for Rare Disorders, Inc.
    How are you doing?
    Mr. Langan. I'm doing just fine. How are you today, sir?
    Mr. Dickey. You have five minutes, at least.
    Mr. Langan. Well, thank you. I believe, if I'm not 
mistaken, I'm the last person on this list of witnesses today.
    Mr. Dickey. That's correct.
    Mr. Langan. For that reason, since I know it's been a long 
afternoon, you have a copy of my written statement for the 
record, so I will try to work from my notes.
    I will basically say to you, sir, we are very delighted to 
be here, even though we're last on the witness list, but we're 
very thankful. My name is Michael Langan. I'm the Vice 
President of Public Policy for the National Organization for 
Rare Disorders. I also happen to serve on the 
executivecommittee of the ad hoc group for medical research funding.
    Interestingly, the National Organization for Rare Disorders 
is actually a voluntary health agency, a large federation. We 
have more than 140 patient advocacy groups as our members. We 
represent people with rare genetic diseases. It has been 
estimated that there are more than 20 million Americans with 
one of over 5,000 rare--usually genetic--disorders.
    These are often known as ``orphan diseases.'' Treatments 
that are developed, often through the NIH and developed by 
private pharmaceutical companies or biotechnology companies, 
are known as ``orphan drugs.'' This issue was addressed by 
Congress in the early 1980s, looking at it really from a 
private sector standpoint, that basically it was very difficult 
for private sector companies to justify a huge investment in 
studying these treatments for these rare, very small patient 
populations, and they developed the Orphan Drug Act to give 
some incentives to the private sector. It has been extremely 
successful. We have drugs that are approved for safety and 
effectiveness and out on the market today that wouldn't have 
existed 10 or 20 years ago.
    Now, Congress did a wonderful job in addressing the needs 
and sometimes the pitfalls of the private sector market. But 
throughout the history of the NIH, the National Institutes of 
Health has been a real place that many people with rare 
diseases could call home. This is where medicine is taken care 
of, regardless of whether there's a potential for profit down 
the road.
    But what we've seen, unfortunately, is that very often 
these diseases still tend to fall through the cracks at NIH. A 
rare disease, such as Lesch-Nyhan Syndrome, or something called 
Leukodystrophy, which is commonly known as the ``bubble boy 
disease,'' some of these conditions may only affect 100 or 200 
or 300 patients in the entire country. What we found is that 
unless there is better coordination at NIH, then very often 
these researchers who are interested in studying these diseases 
don't communicate with one another. They don't know if there 
are any resources out there. They hear all the time that we 
spend more money on cancer or on Parkinson's or on AIDS, and 
very often they become discouraged. They don't know that there 
might be some money available through the NIH, somewhere, 
somehow, to address the needs of these very small patient 
populations.
    The gentleman before me, the neurologist, mentioned a 
number of neurological diseases, Parkinson's Disease, Multiple 
Sclerosis, and others. There are a lot of neurological 
disorders, too, that exist out there, hundreds, where many 
people up here on Capitol Hill don't know about them. Very 
often a lot of people at NIH don't even know about them.
    What we are here today for is to ask you and to ask the 
subcommittee and the full committee to really address these 
needs through looking at some of the structure and the funding 
of the structure at NIH, namely, the Office for Rare Diseases. 
You may be familiar that administratively, there is the Office 
of AIDS Research, or the Office of Women's Health Initiative, 
and some other offices that try to coordinate research. This is 
an office that has been underfunded for many, many years. We 
are asking this subcommittee to fund it at a level of $10 
million next year. Currently it has a budget below $2 million.
    But it has done wonderful work, and I would like to mention 
three things that this office does, and can do in the future 
even better.
    One is to coordinate a number of scientific workshops on 
these rare diseases. Basically----
    Mr. Dickey. You want it to go from $2 million to $10 
million?
    Mr. Langan. Yes, sir. This has been a sorely underfunded 
program at NIH, and that is what we are recommending as the 
patient advocacy community. We recognize that it is hard to 
achieve.
    Basically, some of the activities of this office that 
should continue and be enhanced are holding workshops, these 
scientific seminars, where they actually bring the researchers 
together. So often they can't find patients to even enroll in 
clinical trials.
    Secondly is to continue the creation of a Rare Disease 
Clinical Trial Data Base. I got a call just the other day from 
a woman--I believe she may live in your district, in fact--a 
woman in El Dorado, Arkansas, who has Addison's Disease. No 
one, really, in the State of Arkansas, doctors, practitioners, 
have any idea what Addison's Disease is. It's a rare and 
serious disease, sometimes fatal if it's not treated. It's an 
intestinal condition.
    I'll try to move on real quickly here.
    That's one example; they don't know whether there's even 
any investigational treatment available from NIH. That's why 
the role that this office plays is crucially important.
    Mr. Dickey. She called you and not the doctor?
    Mr. Langan. She called me directly. I don't know if she got 
on the Internet. She found our telephone number. She basically 
called our organization to look for some help and some 
direction to turn in. We definitely headed her in the right 
direction through this data base.
    Mr. Dickey. Can you tell her--it would seem like that it 
would be an invasion of privacy for me to ask her name and then 
to call her. It might be offensive. Could you do me a favor and 
ask her to call me, if she would like to?
    Mr. Langan. I sure will.
    Mr. Dickey. She'll know how to get hold of me.
    Mr. Langan. Thank you. I'll do that, sir.
    I think, just to close on one or two points here, I would 
just like to say that we do join with the ad hoc group for 
medical research funding and many other groups in advocating 
for a 15 percent increase in the overall budget of NIH. We feel 
that NIH is truly a place that rare orphan diseases can indeed 
call home.
    So thank you. If you have any questions, I'd be happy to 
answer them.
    [The prepared statement of Michael S. Langan follows:]


[Pages 1363 - 1370--The official Committee record contains additional material here.]



    Mr. Dickey. Thank you. It's quite creative of you to bring 
up El Dorado, Arkansas. [Laughter.]
    Mr. Langan. I just thought about that, actually.
    Mr. Dickey. It's a pretty good move.
    Mr. Langan. Thank you, sir.
    Mr. Dickey. Thank you. Good job.
    The subcommittee stands adjourned until 10:00 o'clock 
tomorrow morning.









                           W I T N E S S E S

                               __________
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                                                                   Page
Abbott, Quincy...................................................   995
Ahkter, M. N.....................................................  2692
Allen, Terry.....................................................  1177
Allen, W. R......................................................  2679
Ambach, Gordon...................................................  1095
Ammann, A. J.....................................................   927
Ammerman, H. K...................................................  2468
Aquilino, J. D., Jr..............................................  1861
Bagley, Bruce....................................................   504
Bahreini, M. H...................................................  2409
Balkam, R. M.....................................................  2388
Ballard, Charles.................................................  1576
Barron, Dorothy..................................................  2598
Bassett, Helen...................................................  1395
Becerra, Hon. Xavier.............................................  2290
Beck, David......................................................   660
Belleto, Peter...................................................  2492
Bereuter, Hon. Doug..............................................  2112
Berg, S. R.......................................................  2608
Bickers, D. R....................................................  1921
Bisgard, Gerald..................................................  1723
Bosch, Erin......................................................   541
Brady, J. S......................................................  2702
Brewer, Eileen...................................................  1051
Browman, Sara....................................................    82
Brownstein, Alan.................................................   293
Bruckman, T. M...................................................   330
Bufalino, V. J...................................................   304
Burns, Roger.....................................................   193
Butcher, R. O....................................................  1780
Bye, Dr. R. E., Jr...............................................  2657
Calkins, C. L....................................................  2359
Cameron, John....................................................  2045
Campbell, Christopher............................................  1826
Carey, R. M......................................................  1202
Carlson, B. M....................................................   360
Carty, Rita......................................................   822
Cassell, G. H....................................................   571
Castle, Hon. M. N................................................  2322
Chader, G. J.....................................................   199
Chavez, Linda....................................................   672
Cheney, L. V.....................................................  1086
Christensen, B. M................................................   256
Cioffi, Gina.....................................................  1815
Cipfl, Joe.......................................................  1617
Clapp, K. N......................................................  2542
Clyburn, Hon. J. E...............................................  2049
Cody, Jannine....................................................   711
Coffey, D. S.....................................................  1870
Cohen, E. G......................................................   811
Cole, Anthony....................................................  1930
Coletti, Shirley.................................................   869
Coller, B. S.....................................................   111
Collins, Father T. B.............................................  2418
Conn, P. M.......................................................  2711
Conyers, Hon. John...............................................  2210
Cordy, J. T......................................................  1515
Crawford, J. M...................................................    28
Crook, Dr. Errol.................................................   695
Cummings, Hon. Elijah............................................  2159
Cunningham, Hon. Randy ``Duke''..................................  2189
Cunningham, M. P.................................................  1634
Davidson, Bruce..................................................  1745
Davis, F. J., Jr.................................................  1282
Davis, Hon. D. K.................................................  2093
Davis, William...................................................  1286
Davy, Gale.......................................................  1723
Day, A. L........................................................  1159
Day, Osborne.....................................................  2874
De La Cruz, Antonio..............................................  1210
Dearborn, Dorr...................................................  1177
DeBakey, M. E................................................2477, 2582
Delgado-Vega, Debbie.............................................   293
DeSarno, Judith..................................................   546
Digiusto, Walter.................................................  2432
Dinsmore, Alan...................................................  2522
Donaldson, Dr. P. J..............................................  2822
Dorsey, Vera.....................................................  1418
Downing, Carol...................................................  1687
Downs, Hugh......................................................  1373
Drugay, Marge....................................................  1113
Duckles, S. P....................................................  2456
Dusti, Manouchehr................................................  1715
Edwards, Hon. Chet...............................................  2189
Ehrlich, Dr. Michael.............................................  1737
Eknoyan, Dr. Garabed.............................................   787
English, Hon. Phil...............................................  2296
Epstein, S. S....................................................  2838
Erickson, A. G...................................................  1229
Fernandez, H. A..................................................  2410
Flader, Debbie...................................................  1221
Flink, Judith....................................................  1260
Florentz, S. M...................................................  2375
Flynn, Laurie....................................................  1524
Ford, Hon. H. E..................................................  2128
Ford, M. Q.......................................................  1965
Foreman, Spencer.................................................  2672
Franklin, Patricia...............................................  2801
Fraser, Heather..................................................   632
Furmanski, Philip................................................  1304
Furse, Hon. Elizabeth............................................  2083
Fye, W. B........................................................  1702
Geisel, R. L.....................................................  2871
Gekas, Hon. G. W.................................................  2302
Gennarelli, T. A.................................................   407
George, Father. W. L.............................................  2418
Gerone, Dr. P. J.................................................  2420
Giammalvo, Joseph................................................  1815
Giammalvo, Michael...............................................  1815
Gipp, D. M.......................................................  2483
Gonzales, Rachel.................................................  1065
Goodling, Hon. Bill..............................................  1997
Gorosh, Kathye...................................................  2400
Graham, Hon. Lindsey.............................................  2312
Grant, G. A......................................................  2659
Green, Bettye....................................................  1729
Greenberg, Warren................................................  1597
Greenberger, Phyllis.............................................   650
Guinane, Kay.....................................................  2728
Gustafson, J. S..................................................  1021
Hadley, Jack.....................................................  2577
Haley, Melissa...................................................  2355
Hamilton, Hon. L. H..........................................2035, 2299
Hansen, Hon. J. V................................................  2314
Hayworth, Hon. J. D..............................................  2076
Henderson, C. C..................................................  2552
Hendricks, Karen.................................................  1954
Hendrickx, Dr. A. G..............................................  2420
Herndon, Ron.................................................2331, 2834
Herrera, Stanley.................................................  2385
Hihnshaw, A. S...................................................  1040
Hirsch, Dr. Jules............................................1315, 2340
Hobbs, Dr. Joseph................................................   495
Hodge, Scott.....................................................   733
Holtz, Lou.......................................................  1183
Hooley, Hon. Darlene.............................................  2147
Hopkins, E. C....................................................  2564
Horne, Audrey....................................................   906
Hostettler, Hon. J. N............................................  2035
Hunt, Dr. R. D...................................................  2420
Hunter, Kathy....................................................  1167
Hurst, Brenda....................................................  1286
Hutcheson, Rev. Gary.............................................  1738
Ikenberry, S. O..................................................   598
Insel, Dr. Thomas................................................  2420
Izay, J. R.......................................................  2328
Jackson-Lee, Hon. Sheila.........................................  2271
Jacob, Dr. H. S..................................................   103
Jacobs, Jeff.....................................................   779
Jacobson, J. S...................................................   270
Janger, S. A.....................................................  2537
Javits, J. M.....................................................   125
Jenich, A. L.....................................................   607
Johnson, D. A....................................................  1715
Johnson, Hon. E. B...........................................2214, 2267
Johnson, Hon. Nancy..............................................  2194
Johnson, Karen...................................................  1941
Johnson, Susan...................................................  1013
Jollivette, C. M.................................................  2850
Jose, Dr. Babe...................................................  2588
Joyce, Michael...................................................  1826
Judson, J. M.....................................................  2775
Kalabokes, Vicki.................................................  2741
Karcher, Brett...................................................  2661
Kelley, R. O.....................................................    49
Kelly, Hon. S. W.................................................  2121
Kemnitz, Dr. J. W................................................  2420
Kennemer, B. R. ``Pete''.........................................  1464
Kenney, K. K.....................................................   395
King, Dr. T. E., Jr..............................................  1451
Kingsley, R. P...................................................  2437
Kramis, R. C.....................................................   622
Kraut, A. G......................................................   157
Krueger, G. G................................................2735, 2844
Lancaster, R. B..................................................   845
Langan, M. S.....................................................  1360
Lavery, Jack.....................................................  1852
Lawrence, Jerry..................................................  1897
Lazio, Hon. Rick.................................................  2059
Lehrmann, Eugene.................................................  1136
Levand, R. F.....................................................  2474
Lewis, D. E......................................................  2528
Lewis, Rosalie...................................................   722
Licursi, Michele.................................................  1649
Licursi, Ryan....................................................  1652
Lieberman, Trudy.................................................  2462
Lindley, B. D....................................................  2645
Lokovic, J. E....................................................  2596
Ludlam, Chuck....................................................  2661
Lurie, Dr. Nicole................................................   478
Lynch, Dr. J. H..................................................   832
Mahood, W. H.....................................................  1624
Mallory, S. C....................................................   854
Maloney, Hon. Carolyn............................................  2286
Marvel, J. E.....................................................  2040
Mason, Russell...................................................  2483
Matthews, Merrill, Jr............................................  1791
Mauderly, Joe....................................................  1491
McCarthy, Hon. Carolyn...........................................  2268
McCoy, Clyde.....................................................  1189
McGovern, Hon. J. P..............................................  2024
McInerney, K. G..................................................  1505
McKeon, Hon. Buck................................................  2009
McNulty, Joseph..................................................  1013
Meltzer, D. A....................................................  1675
Mendell, Dr. L. M................................................   235
Millar, W. W.....................................................  1908
Millender-McDonald, Hon. Juanita.......................2185, 2210, 2263
Miller, C. E.....................................................    82
Miller, Mike.....................................................    16
Mirin, Steven....................................................   964
Mitchem, Arnold..................................................  1401
Modell, Vicki....................................................   955
Morella, Hon. Connie.............................................  2271
Morton, Dr. William..............................................  2420
Moss, Sharon.....................................................  2437
Munro, Nancy.....................................................  1658
Murdock, N. H....................................................  1104
Murray, Karen....................................................   171
Myers, Caroline..................................................  1759
Myers, Terry-Jo..................................................   530
Neal, Hon. R. E..................................................  2309
Neilson, Eric....................................................    58
Nethercutt, Hon. George, Jr......................................  2137
Neylan, J. F.....................................................    92
Niesing, Ronald..................................................   246
Norton, Hon. E. H................................................  2250
Nussle, Hon. Jim.................................................  2176
O'Toole, Patrice.................................................  2619
Oberstar, Hon. J. L..............................................  2152
Orth, D. N.......................................................  2769
Owens, Hon. Major................................................  2234
Paisley, J. E. C.................................................   854
Pallone, Hon. Frank, Jr..........................................  1991
Paulson, Jerome..................................................     1
Payne, Hon. Donald...............................................  2227
Payton, Benjamin.................................................  1769
Pease, Joanne....................................................   418
Pebley, Dr. A. R.................................................  2822
Peck, S. B.......................................................   340
Pescovitz, Ora...................................................   224
Peterson, Betsy..................................................  2356
Pierce, D. H.....................................................   458
Pierson, Carol...................................................  2488
Podrabsky, Mary..................................................  2459
Poretz, D. M.....................................................   214
Porter, R. P.....................................................  2380
Poshard, Hon. Glenn..............................................  2176
Potaracke, George............................................2817, 2867
Prothrow-Stith, Dr. Deborah......................................  1395
Puckett, Marianne................................................   426
Purjes, Dan......................................................  1441
Quigley, C. N....................................................   584
Quinn, Hon. Jack.................................................  2297
Raezer, J. W.....................................................  1272
Rangel, Hon. Charlie.............................................  2200
Rasmussen, Dwight................................................  2828
Recker, David....................................................    36
Reich, G. E......................................................  1441
Reuter, Peter....................................................   640
Reynolds, Morgan.................................................  1606
Rhodes, David....................................................  1353
Rich, R. R.......................................................    70
Richter, M. K....................................................   798
Rider, J. A......................................................  1826
Riggs, Hon. F. D.................................................  2018
Robb, L. J.......................................................  1004
Roemer, Hon. Tim.................................................  2142
Rogers, P. G.................................................2477, 2582
Romero-Barcelo, Hon. C. A........................................  2166
Rothman, Hon. S. R...............................................  2028
Ruben, R. J......................................................  1219
Rumery-Rhodes, Alison............................................   270
Salazar, Javier..................................................  1148
Samuelson, J. I..................................................  1562
Sanabria, Susan..................................................  1687
Sanders, Hon. Bernard............................................  2172
Saperstein, Dr. L. W.............................................  2533
Savage, C. M.....................................................   319
Schacke, Douglas.................................................  1126
Schagh, Catherine................................................  2497
Schneidmill, Miriam..............................................  1696
Schwartz, Dr. Peter..............................................   686
Scott, Hon. Robert...............................................  2242
Scrimshaw, S. C..................................................  1802
Sellers, Julie...................................................   891
Sever, Dr. J. L..................................................  1429
Shalita, Alan....................................................  2753
Shapiro, Jan.....................................................  1539
Shokraii, Nina...................................................  1410
Silver, H. J.....................................................  2570
Simpson, Bobby...................................................  1839
Skwierczynski, Witold............................................  2631
Slaughter, Hon. L. M.............................................  2099
Small, Dr. William...............................................  2035
Smith, Dr. M. S..................................................  2420
Smith, Hon. Chris................................................  2292
Snyder, E. L.....................................................   139
Somlo, Dr. Stephen...............................................  2105
Spare, Polly.....................................................   749
Stark, Hon. Pete.............................................2134, 2325
Staton, J. D.................................................2590, 2597
Stearns, Hon. Cliff..............................................  2089
Stephens, Michael................................................  2874
Stern, J. S......................................................  1980
Stevens, Christine...............................................  2446
Stevens, Martin..................................................  1533
Stillman, Robert.................................................   917
Stotzer, B. O....................................................  2472
Stratton, R. J...................................................   765
Street, Anna.....................................................   449
Suki, Dr. W. N...................................................   116
Suttie, John.....................................................   360
Tauzin, Hon. Billy...............................................  2052
Taylor, S. D.....................................................   558
Terry, Sharon....................................................  2366
Teter, Harry.....................................................   348
Thomas, Robert...................................................  1418
Thornton, Dr. Allan..............................................  2035
Thurman, Hon. K. L...............................................  2105
Tierney, Hon. J. F...............................................  2117
Tobias, R. M.....................................................   944
Towns, Hon. Ed...................................................  2279
Trueheart, W. E..................................................  1004
Trull, Frankie...................................................   235
Tutt, J. M.......................................................  2648
Van Zelst, T. W..................................................  2880
Ventre, F. T.....................................................  2891
Viste, Dr. K. M., Jr.............................................  1332
Walker, D. K.....................................................   182
Wallace, S.......................................................  2639
Wallace, S. B., IV...............................................  2369
Wansley, R. A....................................................  2782
Waters, Hon. Maxine..............................................  2205
Watkins, Jane....................................................  2828
Watts, Hon. J. C.............................................2289, 2317
Weinberg, R. A...................................................  1479
Weisenburger, Joseph.............................................   371
Weygand, Hon. R. A...............................................  2067
Whiston, David...................................................   436
Whitfield, Hon. Ed...............................................  2300
Williamson, D. E.................................................  1074
Wilson, J. J.....................................................  2350
Wilson, Mark.....................................................   517
Wilson, Robert...................................................   468
Woolley, Mary....................................................  1242
Yager, D. V......................................................  1549
York, Nan........................................................  2828
Young, C. E......................................................   886
Young, Hon. Don..................................................  2111
Yount, R. G......................................................  1887
Zeddun, W. E.....................................................   280
Zitnay, G. A.....................................................  2602


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