[House Hearing, 107 Congress]
[From the U.S. Government Publishing Office]



                 DEPARTMENTS OF LABOR, HEALTH AND HUMAN

               SERVICES, EDUCATION, AND RELATED AGENCIES

                        APPROPRIATIONS FOR 2002

_______________________________________________________________________

                                HEARINGS

                                BEFORE A

                           SUBCOMMITTEE OF THE

                       COMMITTEE ON APPROPRIATIONS

                         HOUSE OF REPRESENTATIVES

                      ONE HUNDRED SEVENTH CONGRESS
                              FIRST SESSION
                                ________
  SUBCOMMITTEE ON THE DEPARTMENTS OF LABOR, HEALTH AND HUMAN SERVICES, 
                    EDUCATION, AND RELATED AGENCIES
                      RALPH REGULA, Ohio, Chairman
 C. W. BILL YOUNG, Florida           DAVID R. OBEY, Wisconsin
 ERNEST J. ISTOOK, Jr., Oklahoma     STENY H. HOYER, Maryland
 DAN MILLER, Florida                 NANCY PELOSI, California
 ROGER F. WICKER, Mississippi        NITA M. LOWEY, New York
 ANNE M. NORTHUP, Kentucky           ROSA L. DeLAURO, Connecticut
 RANDY ``DUKE'' CUNNINGHAM,          JESSE L. JACKSON, Jr., Illinois
California                           PATRICK J. KENNEDY, Rhode Island
 KAY GRANGER, Texas
 JOHN E. PETERSON, Pennsylvania
 DON SHERWOOD, Pennsylvania         
                   
 NOTE: Under Committee Rules, Mr. Young, 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.
       Craig Higgins, Carol Murphy, Susan Ross Firth, Meg Snyder,
             and Francine Mack-Salvador, Subcommittee Staff
                                ________

                                 PART 7A

               TESTIMONY OF MEMBERS OF CONGRESS AND OTHER
                INTERESTED INDIVIDUALS AND ORGANIZATIONS

                              

                                ________
         Printed for the use of the Committee on Appropriations
                                ________
                     U.S. GOVERNMENT PRINTING OFFICE
 77-161                     WASHINGTON : 2002



                        COMMITTEE ON APPROPRIATIONS

                   C. W. BILL YOUNG, Florida, Chairman

 RALPH REGULA, Ohio                  DAVID R. OBEY, Wisconsin
 JERRY LEWIS, California             JOHN P. MURTHA, Pennsylvania
 HAROLD ROGERS, Kentucky             NORMAN D. DICKS, Washington
 JOE SKEEN, New Mexico               MARTIN OLAV SABO, Minnesota
 FRANK R. WOLF, Virginia             STENY H. HOYER, Maryland
 TOM DeLAY, Texas                    ALAN B. MOLLOHAN, West Virginia
 JIM KOLBE, Arizona                  MARCY KAPTUR, Ohio
 SONNY CALLAHAN, Alabama             NANCY PELOSI, California
 JAMES T. WALSH, New York            PETER J. VISCLOSKY, Indiana
 CHARLES H. TAYLOR, North Carolina   NITA M. LOWEY, New York
 DAVID L. HOBSON, Ohio               JOSE E. SERRANO, New York
 ERNEST J. ISTOOK, Jr., Oklahoma     ROSA L. DeLAURO, Connecticut
 HENRY BONILLA, Texas                JAMES P. MORAN, Virginia
 JOE KNOLLENBERG, Michigan           JOHN W. OLVER, Massachusetts
 DAN MILLER, Florida                 ED PASTOR, Arizona
 JACK KINGSTON, Georgia              CARRIE P. MEEK, Florida
 RODNEY P. FRELINGHUYSEN, New Jersey DAVID E. PRICE, North Carolina
 ROGER F. WICKER, Mississippi        CHET EDWARDS, Texas
 GEORGE R. NETHERCUTT, Jr.,          ROBERT E. ``BUD'' CRAMER, Jr., 
Washington                           Alabama
 RANDY ``DUKE'' CUNNINGHAM,          PATRICK J. KENNEDY, Rhode Island
California                           JAMES E. CLYBURN, South Carolina
 TODD TIAHRT, Kansas                 MAURICE D. HINCHEY, New York
 ZACH WAMP, Tennessee                LUCILLE ROYBAL-ALLARD, California
 TOM LATHAM, Iowa                    SAM FARR, California
 ANNE M. NORTHUP, Kentucky           JESSE L. JACKSON, Jr., Illinois
 ROBERT B. ADERHOLT, Alabama         CAROLYN C. KILPATRICK, Michigan
 JO ANN EMERSON, Missouri            ALLEN BOYD, Florida
 JOHN E. SUNUNU, New Hampshire       CHAKA FATTAH, Pennsylvania
 KAY GRANGER, Texas                  STEVEN R. ROTHMAN, New Jersey    
 JOHN E. PETERSON, Pennsylvania
 JOHN T. DOOLITTLE, California
 RAY LaHOOD, Illinois
 JOHN E. SWEENEY, New York
 DAVID VITTER, Louisiana
 DON SHERWOOD, Pennsylvania
   
 VIRGIL H. GOODE, Jr., Virginia     
   
                 James W. Dyer, Clerk and Staff Director

                                  (ii)


 
DEPARTMENTS OF LABOR, HEALTH AND HUMAN SERVICES, EDUCATION, AND RELATED 
                    AGENCIES APPROPRIATIONS FOR 2002

                              ----------                              

                                           Tuesday, March 13, 2001.

  NATIONAL ASSOCIATION OF STATE ALCOHOL AND DRUG ABUSE DIRECTORS, INC.

                                WITNESS

LUCEILLE FLEMING, DIRECTOR, OHIO DEPARTMENT OF ALCOHOL AND DRUG 
    ADDICTION SERVICES AND BOARD MEMBER AND PAST PRESIDENT, NATIONAL 
    ASSOCIATION OF STATE ALCOHOL AND DRUG ABUSE DIRECTORS, INC.
    Mr. Regula. I think we will get started. This is my maiden 
voyage on this committee, and in the Navy, we call it a 
shakedown cruise. So I will be on a shakedown cruise, at least 
for a few weeks. I am pleased to chair this committee. I think 
we have great challenges and great opportunities to help 
people.
    I describe it by saying that the Bible says there are two 
great commandments; the first is to love your Lord, and the 
second is love your neighbor, and this is the love your 
neighbor committee in the Congress, and truly it is because all 
of the things that this committee has an opportunity to do to 
serve the public is something that is very important to all of 
our neighbors, and we look forward to that.
    The President has, in his preliminary budget, given us $4.6 
billion for education in addition, and $2.8 billion for medical 
research. I don't know how the budget shakes out finally until 
we get the detail, but what we are doing here is putting 
together an information base so that we can do a responsible 
job of allocating resources. Obviously, we won't have enough 
money to do everything that would be worthwhile or that we 
would like to do, but we will make the best of it and try to 
make balanced judgments as to what best serves the people of 
this Nation.
    There will be tough decisions, and I want you to all know 
that we will try to be fair and try to be very balanced in what 
we do.
    For some of you, this is your first time testifying, just 
as it is my first time as a member of this committee, and 
certainly as chairman. Two things that we need is a curriculum 
vitae and a statement of Federal grant or contract funds that 
they, or the entity that you represent, have received. Those 
are part of the rules of the committee. We have scheduled about 
25 witnesses each day. We have today, tomorrow and Thursday 
scheduled, and then 3 days next week. Unfortunately, we can't 
hear everyone that would like to be heard, so we have a kind of 
a lottery in which we decide who gets the 5 minutes, and 
everyone has a chance to submit a statement, and the staff will 
read those carefully to ensure that we are fully aware of the 
problems and the challenges that each of you and others who 
submit testimony represent.
    We have a lighting system. I would rather not have it, but 
the reality is that we have to have it, and otherwise we 
wouldn't get done. So every witness will have 5 minutes and you 
be as concise as possible. I will say up front that all of your 
statements also be made a part of the record so that you can 
know that that information will be available to the staff and 
to myself. And we will adhere to the 5-minute rule.
    There will be the green light, and then at 4 minutes, the 
yellow light, and 5 minutes the red light, plus Francine will 
sound the gong and so she is the one that is going to be the 
heavy here. I will be the nice guy and let Francine be the 
tough lady, otherwise we get way behind on these hearings.
    So we will do as best we can, but I often said that the two 
greatest documents are speeches, probably were Lincoln's 
Gettysburg address, and sermon on the Mount, and neither one of 
them took 5 minutes. So you can say a lot in 5 minutes if you 
choose to do so, and we want you to be as concise and give us 
as much information as possible.
    So with that, we will get started. Our first witness today, 
and I notice we have quite a few Ohio folks here, is Luceille 
Fleming, director of the Ohio Department of Alcohol and Drug 
Addiction. We are happy to welcome you, Luceille, and go ahead 
with your testimony.
    Ms. Fleming. Thank you, Chairman Regula and thanks 
particularly for the opportunity to testify. I am here today as 
a current board member and past President of the National 
Association of State Alcohol and Drug Abuse director, known as 
NASADAD. NASADAD's members, the states and territories, have 
front-line responsibility for assuring the quality and 
effectiveness of prevention and treatment. The first question 
usually is how are we doing. There are 9 million fewer regular 
drug users today than there were in 1986. Cocaine use is down 
77 percent. Since 1997, alcohol and other drug use by younger 
children has declined steadily and has leveled off for older 
teens. The bottom line, state and national prevention efforts 
are working to reduce alcohol and other drug use among young 
people.
    Alcohol and other drug addictions cost the Nation as much 
as $400 billion a year. Criminal justice, health care, child 
welfare, lost job productivity and accidents add up to a 
shocking drain of state and federal resources. A new study from 
Columbia University shows that for every dollar spent on 
substance abuse and addiction, 96 cents goes to clean up the 
mess, with only 4 percent going to prevention and treatment, 4 
cents. The substance abuse prevention and treatment block grant 
funds augmented with discretionary funds comprise about three-
quarters of states' budgets. The most effective placement for 
alcohol and drug addiction services in a state is at cabinet 
level. This status opens the doors for partnerships with 
departments that oversee criminal justice, health, child 
welfare, mental health, public safety and others. Recognition 
that addiction is the root cause of so many problems saves 
lives and money.
    In the workplace, alcohol and other drug use accounts for a 
huge waste of taxpayer dollars. Substance abusers cost 
businesses an average of $7,000 per abuser each year. 
Outpatient treatment averages $3,000 per client. Weigh this 
against a lifetime of ruptured families, courtappearances and 
emergency room visits. Treatment programs show tremendous success in 
bridging recovery to individuals and families. Funds for expansion of 
every category of service are needed. Lately, discussion has centered 
around faith-based organizations as providers of treatment services and 
prevention services.
    NASADAD is wholeheartedly in favor of faith-based 
programming if crucial state certification requirements remain 
a condition of funding. A growing trend among young adults 
toward use of drugs rings an alarm for future treatment needs. 
Without steady significant growth in block grant funding, the 
states will be overwhelmed by treatment needs and related 
spending.
    Community anti-drug coalitions, parent training, after-
school programs, early childhood education, and thousands of 
other research-based activities have proven effective in 
reducing youth drug use. Less demand equals less sales. The 
Safe and Drug-Free Schools in Communities Act provides a 
limited pot of money with only 20 percent as governor's 
discretionary funds. The singular effectiveness of the Safe and 
Drug-Free Schools in Communities Act funds should not be 
diluted by merger with any other entity. A proposal that would 
dramatically increase funding to Safe and Drug Free Schools 
over the next 5 years offers a welcome opportunity for states 
to continue backing effective programs.
    In the area of quality research, NASADAD supports increases 
to NIDA, National Institute on Drug Abuse and NIAAA, National 
Institute on Alcohol Abuse and Addiction. Both highly regarded 
institutions are invaluable resources to the addiction and the 
treatment field. The single state authorities of alcohol and 
drug addiction services excel at creating partnerships to 
maximize funding, outreach and accomplishment. We urge you to 
keep the funding coming and growing.
    Mr. Regula. Thank you very much.
    Ms. Fleming. Thank you.
    [The testimony follows:]


              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
    Mr. Regula. Okay. Our next, unless we have burning 
questions, kind of keep moving. No, that is fine. I think you 
have good news, so it is saying that there has been some gains 
being made. That is encouraging.
    Ms. Fleming. Thank you.
    Mr. Regula. Our next witness is John Larson, the member 
from Connecticut who is going to introduce his constituents 
Kathleen Anderson, the East Coast director of the American 
Society for Reflex Sympathetic Dystrophy Complex Regional Pain 
Syndrome.
    Mr. Larson. Thank you very much, Chairman Regula and 
Congressman DeLauro. An honor to be here in keeping with the 
creed of the committee. Let me be very brief, what a compelling 
story that both Kathleen Anderson and her daughter Catherine 
have to tell this committee with respect to reflect sympathetic 
dystrophy. It is my honor to first introduce Kathleen, and then 
have her and her courageous daughter explain to this committee 
the significance and importance and the need for continued, if 
not additional, funding in this much misunderstood disorder.
    Kathleen.
    Mr. Regula. Thank you, John, for bringing your constituents 
here and providing us information. We appreciate your 
involvement.
    Mr. Larson. And I will revise and extend my remarks so in 
keeping in the spirit of brevity, so you can receive it.
                              ----------                              

                                           Tuesday, March 13, 2001.

                     AMERICAN SOCIETY FOR RSD-CRPS


                                WITNESS

KATHLEEN M. ANDERSON, EAST COAST DIRECTOR, AMERICAN SOCIETY FOR REFLEX 
    SYMPATHETIC DYSTROPHY-COMPLEX REGIONAL PAIN SYNDROME
    Ms. Anderson. Thank you, Congressman. Thank you. I am sure 
most of you have either hit your elbow or your shin at one time 
or another, perhaps broken a bone or had surgery. Think back to 
how agonizing the initial onset of pain was. Eventually, the 
pain subsides and you go on with your life. If you develop RSD, 
the pain never goes away. In fact, without proper diagnosis and 
early treatment, the pain worsens, extremity swells, motor 
function becomes limited, and eventually dystrophy or atrophy 
occurs, your life as you once knew it ceases, your lose your 
job, your home and in many instances, your family. This is the 
heart rendering story of approximately 7 million Americans who 
suffer with Reflex Sympathetic Dystrophy.
    My own 17-year-old daughter, Kathryn developed RSD after an 
auto accident when she was 14 years old. Reflex Sympathetic 
Dystrophy is a debilitating chronic disorder that affects the 
nerves, skin, blood vessels, muscles and bones. RSD usually 
involves one or more extremities and may spread through your 
entire body. When you are injured, your sympathetic nervous 
system turns on and tells your brain you are in pain. With RSD, 
your sympathetic nervous system does not turn off and you are 
in constant pain. Allonoyida is a common occurrence with RSD. 
It is pain that is produced by stimuli that doesn't normally 
induce pain such as touch, temperature change or pressure.
    My daughter Kathryn reluctantly attended the fireworks at a 
local park last July. It started to rain. The gentle rain 
hitting her arm felt like acid burning her skin. As she tries 
to attend school, she is accidentally bumped and knocked about 
by other students. Each time she is touched it is as though 
someone is stabbing her. How can we allow our children to 
succumb to such torture? Kathryn takes 22 pills a day to try to 
control her symptoms. The medications offer limited relief, and 
many side effects accompany their use. Michelle Keller from 
Illinois traveled to D.C. with me last year to garner support 
for a national RSD Awareness Month. She died 2 months later 
from the medications that were prescribed. She was 26 years 
old.
    As a parent, it breaks your heart and it crushes your 
spirit to stand by and watch your child suffer. Without 
additional research, there is no hope for the future. RSD does 
not discriminate, but is seen most often in women. The 
incidents of children being affected is escalating. However, 
research is not. Imagine pain so excruciating most patients try 
to commit suicide. Reflex Sympathetic Dystrophy was originally 
diagnosed as far back as the Civil War. It was called 
causalgia. Since then, the name has been changed many times, 
thus, reflex sympathetic dystrophy, and most recently complex 
regional pain syndrome. Recognition of a standard name for the 
disorder will assistobtaining a more timely diagnosis.
    People develop RSD from trauma. A cut, a sprain or broken 
bones are common causes. Surgery and heart disease can also 
lead to RSD. It takes an average of 2 years for a patient to be 
diagnosed with RSD. The period for remission is 3 to 6 months. 
Without early diagnosis, you are left with a lifetime of 
chronic debilitating pain which affects patients and their 
families. The McGill pain index rates pain on a zero-to-50 
scale. RSD at 42 rates higher than cancer and amputation pain, 
yet most patients are told they must live with their pain. The 
mental anguish is more than they can bear.
    Recently, Kathryn was hospitalized for a condition 
secondary to her RSD. I was summoned to the nurses station 
where I was asked to gather information off the Internet and 
educate them about RSD. Can you imagine? In the 21st century in 
the United States of America, a parent has to inform medical 
professionals on how to treat a disorder that has affected so 
many for so long. This is a travesty. We will no longer accept 
this inadequate treatment and the avoidance of RSD by the 
medical community and other social agencies.
    There is presently $1.2 million in the Federal budget 
allocated for RSD research. Approximately 7 million Americans 
suffer with RSD. These figures calculate to about 17 cents per 
patient. Reflex Sympathetic Dystrophy has been overlooked for 
too many years. Education of medical community is essential. 
Protocol for diagnosing and treating RSD is critical. Our 
children and the American people suffering with RSD deserve 
better. The National Institute of Neurological Disorder and 
Stroke, together with other relevant institutes, needs to 
enhance studies for RSD through all available channels, 
including the State of the Science meeting. By increasing 
federal funding for RSD research and recruiting research 
facilities to procure the available funding, we hope to achieve 
the following: One, education for medical professionals to 
assure early diagnosis; two, development of protocols for 
treating RSD patients; three, advancement of treatments by 
researching the cause and/or causes of RSD; and four, 
discovering a cure that would allow RSD sufferers the quality 
of life they deserve.
    [The testimony follows:]


              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
    Mr. Regula. Is NIH doing anything on this, do you know?
    Ms. Anderson. Presently there is $1.2 million in the 
budget. We were unable to find what research facilities are 
doing research at the time. There are a couple of studies out 
there.
    Mr. Regula. You are not aware of any particular agency 
doing it?
    Ms. Anderson. No. Children's Hospital was doing one. I 
don't know if the funds were used.
    Mr. Regula. Ms. DeLauro.
    Ms. DeLauro. If I can just for a second, Mr. Chairman. 
First to my colleague, John Larson, for introducing the 
Andersons to us, and you shouldn't have to make this struggle 
alone. Let me just tell you this, I think we can see here today 
that we have an individual who almost literally, you know, on 
her own with several others around the country, has really 
taken on an illness that is really affecting 7 million in this 
country every year. Please understand that your words are not 
going unheeded on this committee. I know that the Chairman 
feels that way and my colleagues who sit on this committee, 
that we will do everything we can to see that we can provide 
some efforts in education and research for this illness and to 
your family, and to Kathryn, there is not much to say except we 
applaud your courage and we want you to know you are not alone 
in this fight. Thanks.
    Ms. Kathryn Anderson. Thank you. I just wanted to say thank 
you for allowing my mother to speak on behalf of all who are 
suffering. RSD has stolen my teenage years, but please help us 
find a cure before it steals someone else's.
    Mr. Regula. Well, thank you both for bringing this to our 
attention, and Mr. Larson, thank you.
    Our next witness is Mr. William Murrain, the CEO Oakhurst 
Medical Centers. Thank you for coming. Go ahead.
                              ----------                              

                                           Tuesday, March 13, 2001.

                        OAKHURST MEDICAL CENTERS


                                WITNESS

WILLIAM MURRAIN, JD, CEO, OAKHURST MEDICAL CENTERS, INC.
    Mr. Murrain. Thank you, Chairman Regula. Good morning 
Chairman Regula--Ranking Member Obey is not with us today--and 
other Members of the committee. I have requested this 
opportunity to testify before the Labor HHS Appropriations 
Subcommittee today to discuss in brevity the needs of Oakhurst 
Medical Centers, which is a community health center and a fate 
which is shared by many similar-situated entities around the 
country.
    Oakhurst Medical Centers is a community-based and operated 
501(C)(3) Georgia nonprofit corporation, which has been 
providing a full range of quality and accessible primary health 
care services to the medically underserved, indigents of DeKalb 
County, Georgia since 1981. Oakhurst receives 40 percent of its 
operating budget from the Federal Bureau of Primary Health 
Care, which has enabled Oakhurst to provide health care on a 
sliding fee scale basis, which means we serve the folks who 
enter our door, according to the size of their income and the 
size of their family. No one is turned away from our doors, as 
is the case of most community health centers across the breadth 
of this land. Oakhurst served over 14,000 DeKalb residents last 
year, of which 60 percent were children and over 80 percent 
were covered by either Medicaid, Medicare and/or the Georgia 
component of the Federal Child Health and Insurance Program, 
Peach Care for Children.
    Oakhurst is a committed partner in the build for primary 
health care initiative to achieve zero percent disparities and 
100 percent access to quality health care for the less 
fortunate members of our community. Oakhurst is committed to 
improving the quality of life of the residents of our community 
through efforts to expand their appreciation for living fuller, 
healthier lives through seamless, continual accessible, quality 
health care. These efforts include, but are not limited to, 
initiatives, such as increased early and complete childhood and 
adult immunizations and care, prenatal and delivery care for 
expectant mothers, diabetic and hypertension education and 
care.
    Oakhurst operates two clinics in DeKalb County, Georgia, 
which are located in Decatur and Stone Mountain, respectively. 
Oakhurst Medical Centers is a Federal qualified community of 
centers which has been providing this breadth of health care 
service, primary care service, as a safety net health care 
provider throughout Georgia. We are the first line of defense 
for the indigent and the medically underinsured, who oftentimes 
turn to health care facilities for emergency care when they 
should have access to folks such as us because either their 
income does not provide or their employment does not provide 
it. Oftentimes being unemployed also raises concern for them.
    I, for one, am asthmatic. There is an increasing numberof 
incidents of minority males who are dying from asthma across this land 
because they end up having a situation get so acute that they turn to 
emergency rooms for care. Whereas, if they had a primary care facility 
available to them on a regular basis, we would be able to address this 
in a continuing, seamless care delivery system that affords them a 
quality of life that most of us enjoy and take for granted.
    Demographics of my county of 650,000 says that we are over 
45 percent minority, 35 percent of whom are estimated to be 
medically indigent and/or underinsured. As a classic safety net 
health care provider, this urban community medical center 
received $869,000 from the Federal Bureau for Primary Health 
Care 330 Grant Fund Program last year. It made up about 40 
percent of our overall budget. This support has made it 
possible for us to generate over 14,000 encounters of citizens 
of DeKalb County, and there are more who still knock at our 
doors who we can't serve adequately because of limited 
resources. The nature of the population we serve and other 
community health centers such as ours say that our mission 
severely limits our ability to generate funds by increasing 
charges to our patients.
    In April of 2000, Oakhurst relocated its clinic from what 
is a number of us, a gentrification moving around us, 
relocating indigent population. We have had to relocate to 
places where our population is. This has added costs, which the 
federal government does not cover. One of the reasons we are 
here this morning is we are in urgent need of funds as are 
other community health centers, to renovate and equip our 
facilities to allow us to be able to deliver quality care, not 
poor people care, not poor care, but quality accessible care to 
all who enter our doors, and this equipment and renovation 
facilities that we ask for, as other centers do, is one that 
will enhance our ability to continue to serve the population.
    Mr. Regula. Well, I think the community health centers do a 
great job. I have one in my own community or nearby that serves 
the public very well. I assume you are a nonprofit.
    Mr. Murrain. We are absolutely nonprofit, sir.
    Mr. Regula. Thank you for coming.
    [The testimony follows:]


              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
    Mr. Regula. Our next witness is Dr. Edward Cornwell, chief 
of trauma, Johns Hopkins.
                              ----------                              

                                           Tuesday, March 13, 2001.

                      AMERICAN COLLEGE OF SURGEONS


                                WITNESS

DR. EDWARD E. CORNWELL III, CHIEF OF TRAUMA, THE JOHNS HOPKINS HOSPITAL
    Dr. Cornwell. Good morning, Mr. Chairman, Congressman 
Hoyer, Congressman Jackson. My name is Edward Cornwell. I am 
Associate Professor of Surgery and Chief of Trauma at Johns 
Hopkins, and I would like to thank you for the opportunity to 
express the views of the American College of Surgeons in 
support of the Trauma Systems Planning and Development Act for 
which we are seeking $6 million in federal funding for fiscal 
year 2002.
    Though we don't dwell on it consciously, Mr. Chairman, 
Americans over the last several decades have come to assume 
that, God forbid, should major injury befall us, that the 
trauma system in our area will quickly identify the severity of 
our injuries and transport us to the most appropriate facility. 
The Trauma Systems Development Act seeks to make a reality out 
of that assumption. You are aware of the importance of injury 
as a public health problem, and numbers, such as 93,000 
Americans killed each year, 20 million disabilities and 12 
percent of health care expenditures, but rather than dwell on 
those numbers, I would like to tell you a couple of anecdotes 
that will put a face on severe injury.
    Consider for a second, Labor Day weekend 1997, when Lady Di 
had her fatal car crash. She was reported at the scene walking 
around and talking for 45 minutes before a slow transport to a 
medical center where nearly an hour and a half after her 
injuries she arrived in an extreme condition. She had near 
lethal injuries to be sure, but her best chance for the doctors 
at the receiving hospital would have been if she was quickly 
transported to an appropriate facility.
    Similarly, Prime Minister Rabin sustained a gunshot wound 
to the chest and also an injury to the pulmonary vein, the main 
vein that takes blood from the lungs to the heart. Forty-five 
minutes transpired between the time he was injured and the time 
he arrived at a facility. They were not well served by the 
absence of a trauma system.
    Consider in distinction, the story of Bobby Hurley as we 
enter the March Madness basketball period. Bobby Hurley had a 
very successful college basketball career, played professional 
basketball for the Sacramento Kings. In the early 1990s 
sustained a major car crash with a near lethal and uncommon 
injury to his main stem bronchus, which is the main airway that 
leads from your trachea to the lung. His injury was quickly 
recognized. He was taken to a nearby trauma center and the 
resident surgeon in the emergency department that night had 
just finished writing a chapter on that injury with his faculty 
member, who was landing in an airplane and looked down and saw 
the circulating lights at the time that this crash occurred. 
There is some serendipity in that story, but he was quickly 
transported to the appropriate facility and, in fact, resumed 
his professional career.
    Now consider President Reagan some 20 years ago when he was 
shot in this city. Initially, it was not recognized that he had 
sustained a gunshot injury. He was pushed in the back of the 
limousine, was driven to the White House and en route, coughed 
up a little bit of blood. They recognized that the President 
was injured, turned around quickly, went to GW Hospital, the 
level one trauma center in town. The Secret Service realized 
what all paramedics know, where the most appropriate center 
happens to be. This 69-year-old man still had the wherewithal 
to walk himself into the emergency department and was cracking 
jokes at the emergency medicine doctors. Well, in a Ronald 
Reagan voice of course, he said, I hope you are Republicans. He 
did survive and served two terms.
    Mr. Hoyer. I'm sure they weren't, but they treated him 
anyway.
    Dr. Cornwell. Well, in 1990, Congress passed the Trauma 
Care Planning and Development Act with the purpose of providing 
grant seed money for states for planning, implementing and 
developing comprehensive systems. It operated for 3\1/2\ years 
until ironically funding was rescinded in 1995 in order to 
finance emergency disaster relief. The program was reauthorized 
in 1998 as part ofHealth Professions Education bill, and last 
year Congress approved 3 million in fiscal 2001 funding for the 
program. There was an academic symposium in the state of Washington 
which conducted a survey and reviewed the results in 1998 of the 
implementation of trauma systems. At that time five States, Maryland 
and Illinois among them, had the eight essential criteria for a full-
fledged trauma system. It was found that 28 other states had at least 
six of those eight essentials. That was an improvement over 5 years 
earlier, in part, due to the Trauma Systems Development Act of 13 
states just some 5 years earlier. Efforts are underway at HRSA to use 
$3 million in 2001 funding to conduct a survey of State health 
departments regarding effectiveness and capabilities of trauma systems. 
This will be essential for restructuring the program when it will be 
reauthorized next year.
    Last year, 114 of your colleagues, Mr. Chairman, including 
subcommittees Chairs Walsh and Callahan, and Senators from 
across the spectrum, Helms, Kennedy, Hatch and Wellstone among 
them, supported this system. We hope that you will see fit to 
support this system again this year.
    Thank you for the opportunity to speak.
    [The information follows:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
    Mr. Regula. Very important function.
    Mr. Hoyer. Mr. Chairman, I don't have any questions, but I 
want to welcome Dr. Cornwell to the committee. We obviously are 
extraordinarily proud, both of Johns Hopkins, one of--the 
premier, I suppose, medical research facility in the world. So 
noted by others not necessarily just us. But also he has been 
involved with the Maryland Institute of Emergency Medicine, 
which was set up in the early 1970s by Governor Mandel. I was 
in the State Senate at that point in time. It was then a 
forerunner of what has followed, but it was the first of its 
type and, for instance, I represent southern Maryland.
    We purchased some high speed all-weather helicopters, 
French Delphine helicopters, which can get somebody, for 
instance, if Princess Di had had that accident in Lexington 
Park, she could have been at, within a half an hour, the 
emergency medicine with all of the facilities it had there and 
for immediate intervention, and it obviously is a life-saving 
capability as well as a quality of life saving, because 
although somebody may not lose their life as a result of 
delayed treatment, they may lose certain capabilities they 
otherwise would have.
    Dr. Cornwell we appreciate the work that you are doing, 
appreciate the contribution you have made to our emergency 
medicine system in Maryland and thank you for being here.
    Thank you, Mr. Chairman.
    Mr. Regula. How big an area do you serve? You mentioned the 
helicopters.
    Mr. Hoyer. The southern Maryland facility, that helicopter 
serves approximately 250, 300,000 people. Southern Prince 
George's County and Southern Maryland.
    Dr. Cornwell. There are 10 trauma centers distributed 
throughout the State.
    Mr. Regula. Considerable outreach.
    Dr. Cornwell. That is correct.
    Mr. Hoyer. Because University of Maryland Hospital in 
Baltimore is the center for trauma unit, so you need to get 
people there as the doctor indicated very quickly.
    Mr. Regula. Mr. Jackson.
    Mr. Jackson. Mr. Chairman, let me first begin by welcoming 
you, the Labor HHS committee. Chairman Regula brings the kind 
of sensitivity to the issues that Dr. Cornwell is talking 
about, and we will do everything that we can to provide this 
funding. I really want to take this opportunity to associate 
myself with Congressman Hoyer's remarks about Dr. Cornwell. Dr. 
Cornwell is a well-known--national and internationally-known 
physician. Most recently--I can't remember the network that 
covered the trauma unit at your----
    Dr. Cornwell. ABC.
    Mr. Jackson. ABC covered the trauma unit for a number of 
days at Johns Hopkins, and Dr. Cornwell was featured in that 
coverage. We will be calling on you, Dr. Cornwell, for a number 
of issues related to trauma care, but beyond trauma care, our 
committee is actually very blessed that you took time out of 
your very busy schedule to come and testify before us today.
    Thank you, Mr. Chairman.
    Mr. Hoyer. Mr. Chairman, if I can follow up, I was not here 
at the beginning and apologize for that, but this being the 
first hearing I have been to, and I too want to welcome you to 
this subcommittee. For those of you who are citizens and 
advocates of very various different items, this committee has 
been blessed over the years to have had the opportunity to 
serve on it since January of 1983 with leadership, sensitive to 
both the health and educational needs of this country and 
leaders in that regard. When I heard that Mr. Regula would be 
taking this committee, he is our second ranking Republican on 
the committee, not just this subcommittee, but the full 
committee, I was told then and want to tell all of you I am 
very, very pleased. He is thoughtful, hardworking, I hate to 
use the term ``compassionate conservative''.
    Mr. Regula. Go ahead, say it again how--doesn't hurt.
    Mr. Hoyer. There are however places where it is more 
applicable than others, and it is certainly applicable in this 
instance. And Mr. Chairman, we welcome you to the committee.
    Mr. Regula. Thank you very much. I will tell the President 
there are two of us now.
    Mr. Hoyer. Didn't say that, Mr. Chairman. I welcome you to 
the committee.
    Mr. Regula. Thank you, Doctor. Our next witness is Margo 
Wootan from the coordinator of the National Alliance for 
Nutrition and Activity.
                              ----------                              

                                           Tuesday, March 13, 2001.

              NATIONAL ALLIANCE FOR NUTRITION AND ACTIVITY


                                WITNESS

MARGO G. WOOTAN, D.SC., COORDINATOR, NATIONAL ALLIANCE FOR NUTRITION 
    AND ACTIVITY
    Ms. Wootan. Thank you and good morning. I want to thank you 
on behalf of the National Alliance for Nutrition and Activity 
for this opportunity to testify in support of nutrition, 
physical activity and obesity funding at the Centers for 
Disease Control and Prevention. Our coalition, NANA, is 150-
member organizations and a very diverse group of organizations 
that have come together in mutual concern over the many 
illnesses, disabilities, premature deaths and financial costs 
caused by poor diet, physical inactivity and obesity.
    The best hope for containing Medicare and other health care 
cost is to help people stay healthy, reducing their need for 
costly medical care. As you know, the leading causes of illness 
and death in this country are chronic diseases like heart 
disease, cancer and diabetes, many of which are caused by 
unhealthy diets and physical inactivity. Because of the chronic 
nature of these diseases, they often require very expensive 
medical treatments, prescription drugs and hospitalizations, 
not just over weeks like infectious diseases, but over decades. 
Better diets could help reduce the medical costs and other 
costs by at least $71 billion each year according to the U.S. 
Department of Agriculture, and if physically inactive Americans 
became more active, the CDC estimates we could save about $77 
billion a year in just medical costs, and even more if you 
count related costs.
    Unhealthy eating habits and physical inactivity not only 
determine whether or not you are going to fit into your bathing 
suit this summer, but actually are the leading causes of death 
in this country, which I think most people find surprising 
according to the U.S. Department of HHS. They kill about 
310,000 to 580,000 people every year. That is as many people 
that die from tobacco each year, and it is actually five times 
more people than are killed by guns, HIV and illicit drugs 
combined. They may not only kill people early, but they are 
also leading causes of disabilities like blindness and limb 
amputations that result from diabetes or from loss of 
independence from strokes or osteo-related hip fractures. I'm 
sure you heard the rates of obesity in this country sky-
rocketing. Increases are occurring throughout the population in 
both men and women and people of all ages of all races, of all 
educational backgrounds, and in all regions of the country. We 
have ignored these issues for so long that now actually two-
thirds of American adults are overweight enough that it puts 
them at risk of serious diseases and high health care costs and 
the rates are still climbing.
    CDC is already detecting a parallel increase in diabetes 
rates, which is largely caused by overweight and by physical 
inactivity. Even more shocking is that obesity rates in 
children have doubled over the last two decades. Putting our 
kids at risk for health problems now and in the future. 
Already, we are seeing risk factors for heart disease like high 
blood cholesterol, high blood pressure in children as young as 
five to 10 years old. Already showing the early signs of heart 
disease. Type 2 diabetes can't even be called adult onset 
diabetes anymore because of the high rates we are seeing in 
children and in teenagers. For example, in the greater 
Cincinnati area, the incidents of type 2 diabetes has increased 
tenfold between the early 1980s and the early 1990s.
    Now, while personal interest in nutrition and physical 
activity is at an all-time high, many aspects in modern life 
make healthy eating, physical activity and maintaining a 
healthy weight more difficult than in the past. These societal 
changes make it more important than ever that we do more to 
help Americans be more physically active and to eat healthier 
diets. Yet despite rising obesity rates and the enormous impact 
that unhealthy eating habits and physical inactivity have on 
our Nation's health and health care costs, Federal and State 
governments are doing very little to help Americans.
    [The information follows:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
    Mr. Regula. You are absolutely right. How do you get your 
message out?
    Ms. Wootan. Well, actually there have been a number of very 
effective and cost effective pilot programs that get people to 
walk more, to cut back on saturated fat which contributes to 
heart disease, to eat more fruits and vegetables and make other 
changes to the diet, also.
    Mr. Regula. Do you do this through publications, or 
schools, education? It is an important message and I am just 
curious how we get it to the people.
    Ms. Wootan. One example is a campaign we did in West 
Virginia where we used paid advertising and public relations 
activities in some community programs and schools and 
supermarkets, and for just 10 cents per person we were able to 
double lowfat milk consumption in just 7 weeks, and those 
results hold very nicely, even 2, 3 years later.
    Mr. Regula. What do you think of the practice of schools 
having soft drink machines, particularly next to the cafeteria? 
You can take the fifth if you would like.
    Ms. Wootan. Well, I think there is a lot of evidence to 
show that kids are eating more calories, obesity is a growing 
problem and that soft drinks are contributing extra calories, 
and they are also displacing healthier foods like milk, which 
could help prevent osteoporosis or orange juice or other fruit 
juices which could reduce their risk of cancer. So I think 
schools have financial strains that we need to consider, but we 
shouldn't be balancing school's budget at the expense of our 
children's health.
    Mr. Regula. Thank you very much.
    Ms. Wootan. Can I just add our request?
    Mr. Regula. We give you one extra minute.
    Ms. Wootan. Okay. Thanks. I just wanted to get to the crux 
of it. What our coalition is advocating and most health 
organizations agree is that the CDC needs, for fiscal year 
2002, about $50 million for nutrition, physical activity and 
obesity prevention programs. Currently they are only able to 
fund about six states, and they need enough funding so that all 
states can have money to address these issues for developing, 
testing and disseminating model programs, communications 
campaigns, effective policies, doing surveillance and other 
things that will promote healthy diets and physical activity.
    Mr. Regula. Thank you very much. I think you are really on 
the right track.
    Okay. Our next witness is Dr. Jones, and he will be 
introduced by our colleague, Mr. Jackson.
    Mr. Jackson. Mr. Chairman, Richard L. Jones, Ph.D., 
currently serves as President and CEO for the Metropolitan 
Family Services, one of the largest private human service 
agencies in Chicago, Illinois. Previously Dr. Jones served as 
president of the Center for Families and Children and executive 
director of Boston Children Services. Dr. Jones completed his 
masters and Ph.D. Work in social work administration from the 
Mandel School of Applied Social Services of Case Western 
Reserve University. Previous leadership responsibilities have 
included serving on the board of directors for leadership 
Cleveland, Cleveland United Way, cochairing the International 
Year of the Family and serving as chair of the Commission of 
Chemical Dependency for the Child Welfare League of America.
    Currently, Dr. Jones serves as the Chair of the visiting 
committee of the Mandel School of Applied Social Sciences at 
Case Western Reserve University and as a member of the board 
for the Alliance of Children and Families and a Chicago Council 
of the United Way Crusade of Mercy. Dr. Jones is also a member 
of Governor Ryan's Families and Children Leadership Subcabinet.
    I am honored that my constituent is before our committee 
today, Mr. Chairman. I present to the subcommittee Dr. Richard 
Jones.
                              ----------                              

                                           Tuesday, March 13, 2001.

                      METROPOLITAN FAMILY SERVICES


                                WITNESS

RICHARD L. JONES, PRESIDENT AND CHIEF EXECUTIVE OFFICER, METROPOLITAN 
    FAMILY SERVICES
    Dr. Jones. Thank you, Congressman Jackson.
    Mr. Regula. Dr. Jones, we are happy to have you, and 
particularly your Case Western Reserve connection. It is almost 
as good as Hopkins.
    Dr. Jones. Thank you very much. On behalf of the 
Metropolitan Family Services, I would like to describe one of 
Illinois's oldest family services organization that was founded 
in 1857, and we now provide services to over 100,000 
individuals and families. Metro Family Services thinks that the 
most effective resource for support and change is the family. 
If one family member is at risk, the entire family is affected, 
and when families are strong, stable and self-sufficient, 
communities are strengthened and all of us reap the benefits. 
Our commitment to families has remained constant throughout our 
history, but the needs of our families have certainly changed 
in response to society's economic, cultural and public policy 
transformation. Most recently, families have cited concerns 
about having access to jobs that offer security, the lack of 
available before and after-school care, the ill-affordable day 
care and increased demand for elder care.
    Metropolitan Family Services works hard to meet the 
changing needs of Chicago's families, and we ask that the 
subcommittee support child and family service organizations 
like ours, since we are the first line of defense for families 
in crisis. As our Nation's baby boomers age, senior citizens 
continue to be America's fastest growing population group and 
today, nearly one in every four households is involved in 
family caregiving to elderly relatives or friends, and this 
trend will only become more profound. Because family caregivers 
provide a full 80 percent of all health care to frail elders, 
we must surely support and encourage them. Metropolitan Family 
Services believes that a conscious effort should be directed 
toward the development of innovative community-based programs 
which support families in caring for their senior members. We 
are very grateful for the subcommittee's past support of our 
family caregiving program, and we support increased funding of 
the National Family Caregiving Program at the Administration on 
Aging.
    Another issue of great concern to us is that children with 
emotional or mental health problems who are being cared for by 
parents with their own mental health issues, the publicly 
funded system of mental health services is based on a 
bifurcated model. Children and adults are funded individually. 
However, nearly 60 percent of the parents whose children we 
provide with mental health counseling have unmet mental health 
needs or undiagnosed mental health illnesses such as depression 
and a variety of disorders. Research has shown that children of 
depressed parents are three times as likely to experience 
depression or mental disorders than their parents and 
Metropolitan Family Services proposed to build up on our 
community-based work with low income families with children who 
are exhibiting significant behavioral and emotional disorders 
by directly addressing the needs of their parents and thereby 
supporting the whole family. We ask that the subcommittee 
direct the center for Mental Health Services to work with 
community-based organizations to demonstrate the effectiveness 
of a family-centered approach to mental health counseling.
    Finally, Metropolitan Family Services is interested in 
engaging young fathers with their children. Nationally almost 
25 million children are living without their fathers. These 
children are at much greater risk for dropping out of high 
school, giving birth as a teenager and becoming involved with 
the juvenile justice system. While most dads are/or want to be 
present when their child is born, unemployment, the lack of 
parenting skills and negative feelings in the family and 
community often result in the disengagement of dads. For the 
past 5 years Metropolitan Family Services has piloted a small 
parent education and job training program for teen dads. Last 
year, all 20 of the young fathers who participated in the 
program established paternity and began paying child support. 
All established bank accounts, set aside money for savings and 
equally important, there are no second pregnancies.
    We have learned that with support, young dads can succeed 
in securing their education, gaining employment and improved 
parenting skills. I ask that the subcommittee support and 
expand the Fatherhood Support program that will increase the 
financial self-sufficiency of fathers and their ability to 
sustain support for the children, develop the father/child 
relationships, and assist fathers in assuming greater parenting 
responsibilities.
    Thank you, Chairman Regula. Thank you Congressman Jackson, 
and also, thank you Congressman Hoyer.
    [The information follows:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
    Mr. Regula. Thank you. Mr. Jackson, would you like to 
comment or question?
    Mr. Jackson. No, Mr. Chairman. I can vouch for this 
organization in terms of the outstanding work they are doing in 
the Chicago metropolitan area. We welcome you at some point in 
time, Mr. Chairman, to tour Metropolitan Family Services in the 
city of Chicago, and we would welcome you to the city of 
Chicago with open arms sir.
    Mr. Regula. Does your organization get local or State 
support in addition to Federal?
    Dr. Jones. We do. In fact, State support represents 40 
percent of our total budget. We are also a United Way 
recipient, and we have a very active board that is engaged in 
fund-raising activities.
    Mr. Regula. So you are a nonprofit?
    Dr. Jones. Yes, we are.
    Mr. Regula. Okay. Well, thank you for coming. It sounds 
like you are doing a very useful service to that community: 
Thank you.
    Okay. Our next witness is Patricia Furlong, president 
Parent Project for Muscular Dystrophy. She will be introduced 
by our colleague, Mr. Wicker, who's a long time champion of MD 
spell funding and programs.
    Mr. Wicker. Thank you, Chairman Regula, and that has a real 
good sound to it. So let me take a second or two justto say it 
is wonderful to be back on this subcommittee for another Congress and 
to have you serving as our capable chairman.
    You know, Mr. Chairman, these public witness hearings are 
so frustrating because we only have a brief time for people to 
come up and tell just 5 minutes or so about their cause, and it 
indicates how many, many needs there are out there across the 
country and across the spectrum of disease and medical care, 
and I just hope that the people that are here today understand, 
and the ones that will be coming in the rest of the week, there 
are so many needs, and the fact that you have got such a short 
time doesn't mean that we have a short interest span in the 
diseases.
    I think Mr. Chairman, that the area of muscular dystrophy, 
and particularly childhood muscular dystrophy is an area that 
we are poised to make great progress on. I have a bill with 
Representative Colin Peterson of Minnesota, H.R. 717, which 
attempts to address some of the concerns about the diseases of 
Duchenne muscular dystrophy and Becker muscular dystrophy. 
Members of the committee may not realize that Duchenne muscular 
dystrophy is the most common, most lethal childhood genetic 
disorder, and that is what Mrs. Patricia Furlong is here to 
talk to us about today. She is the president of the Parent 
Project, an organization representing parents of children with 
Duchenne and Becker muscular dystrophy, and we are just 
delighted to have her and we wish her well, and I look forward 
with working with Mrs. Furlong and her organization during this 
Congress to get some additional emphasis on this very dreaded 
childhood disease.
    Mr. Regula. Thank you and welcome, Mrs. Furlong.
                                           Tuesday, March 13, 2001.

                 PARENT PROJECT FOR MUSCULAR DYSTROPHY


                                WITNESS

PATRICIA FURLONG, PRESIDENT, PARENT PROJECT FOR MUSCULAR DYSTROPHY
    Ms. Furlong. Thank you. I must say, first of all, it is an 
honor to be in this committee and I thank you, Chairman Regula, 
Congressman Wicker, Congressman Hoyer, and Congressman Jackson 
for listening to us. It is wonderful to hear Duchenne come up 
as a subject, and I am very honored to represent Parent Project 
Muscular Dystrophy, a nonprofit voluntary health organization 
comprised of parents and grandparents whose children are 
diagnosed with Duchenne and Becker muscular dystrophy. Our goal 
is to expedite treatment and cure for this heartbreaking muscle 
disorder by increasing support for research.
    Today, I ask the members of the committee to concentrate on 
Duchenne. For years, we have witnessed to the public that we 
are almost there, we are around the corner. In fact, we aren't. 
Answers are on the horizon? No. Mr. Chairman, we are not there, 
not yet. Although emerging strategies leading to treatment and 
therapy in the future are in the works, the NIH investment in 
Duchenne is \1/2000\ of their budget. On a sunny day in June in 
1984, my own two boys were diagnosed with Duchenne muscular 
dystrophy. To this day, I recall those exact words. Mrs. 
Furlong, your sons have Duchenne muscular dystrophy, they will 
not walk by the age of 11, they won't be moving their arms by 
the age of 14 and they will be dead before 20. The doctor asked 
me if I had any questions. I wondered why the sun was still 
shining. My personal story, therefore, cannot just be about me, 
it has to be about all boys diagnosed with Duchenne and 
following their exposure to substantial medical intervention 
losing all independence and finally their life.
    Mr. Chairman, nothing has changed in the last 100 years. 
Boys continue to die before reaching adulthood. They continue 
to lose all function and they don't experience life as adults. 
One day long ago, my son Patrick was trying to convince me of 
something very crazy and he said to me, ``mom, pretend I am in 
a midlife crisis.'' At the age of eight he was in his midlife 
crisis. Duchenne is the most common lethal disorder of 
childhood. It has not had sufficient attention, and the 
ordinary person has no recognition or understanding of this 
disorder, and yet due to the high spontaneous mutation rate, 
every single person is at risk.
    The clinical explanation does not reflect the disorder. By 
the age of 12, boys have lost their ability to walk, the child 
will need help with ordinary things, toileting, lifting a fork, 
wrapping their arms around someone they love. By the age of 17, 
they cannot breathe. Often invasive ventilation is required. 
During their late teens or early 20s, young men with DMD are 
unable to manage their oral secretions. They have difficulty 
with digestion. They need manual assistance for removal of 
stool. Remember, muscle is much more than moving bones. The 
diagnosis of Duchenne is accompanied by a lifetime of 
progressive loss of function, loss of independence, dependence 
on family. It is extraordinary in its physical, mental, 
psychological, spiritual and financial burden for the family 
and for all of us as a society. Finally, the loss of these 
boys, their absence diminishes all of us, and diminishes the 
greatness of this country.
    Beginning in 1997, the Parent Project Muscular Dystrophy 
members successfully initiated a legislative agenda. We started 
with grassroots letters to all of you, and thankfully all of 
our voices were heard on Valentine's Day. H.R. 717 was 
introduced by Congressmen Wicker and Peterson. We were 
delighted; what a Valentine's Day Gift. Parent Project Muscular 
Dystrophy has established extensive collaborations with the NIH 
and CDC, but without adequate funding, our effort will fall by 
the wayside and we will lose this generation of children. Mr. 
Chairman, Congress is very generous to NIH, but this disease, 
the world's number one genetic disorder of childhood, needs 
more money. No wonder there is nothing available at \1/2000\ of 
the NIH budget. Our children are not out of their warranty 
period before they wear out. Our children will never have adult 
status to advocate on their own behalf. Our children's 
degeneration will send ripples of pain and dysfunction through 
so many families.
    On behalf of the children with Duchenne and Becker muscular 
dystrophy and their families, we are asking you to commit a 
$100 million over 5 years, specifically for Duchenne. This 
would change the face of this disease forever and jump-start an 
important field of research that has long been neglected. Today 
we don't seek exceptional expenditures for these children, we 
are seeking some equity. Respected members of Congress today, 
our battle is against Duchenne and Becker muscular dystrophy. 
We seek equity. Equity in research opportunities and set aside 
funding and the review process and worth. The worth of every 
child that has Duchenne and Becker muscular dystrophy. It is 
too late for my own sons, they died at the ages of 15 and 17.
    Chairman Regula, I am so thankful for you for listening to 
my testimony and for hearing about Duchenne today. Thank you 
and thank you, Congressman Wicker.
    [The information follows:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
    Mr. Wicker. Thank you, ma'am. I will just say, one of the 
most difficult things that government has to do is allocate 
resources among a number of crying needs such as this, and I 
know that everyone who testifies today will have a compelling 
story just as you have, but you have certainly given us some 
very fine testimony this morning, Mrs. Furlong, and I would 
invite my colleagues to join Congressman Pete and me on the 
childhood muscular dystrophy caucus as we work with NIH to try 
to direct more resources toward this disease, and thank you 
very much for your efforts. Thank you, Mr. Chairman.
    Mr. Regula. Mr. Hoyer.
    Mr. Hoyer. Mr. Chairman, I just make an observation. We 
have had a lot of discussion about the resources available to 
the Federal Government. This is a perfect example where 
although we have a lot of resources, there are a lot of unmet 
needs and that is what your testimony is about, that although 
we are spending a lot of money at NIH on critically important 
enterprises, there is--I don't think you certainly didn't 
testify, I don't think anybody will testify, that we are 
spending too much money at NIH doing X, Y or Z, but many will 
testify that there are other unmet needs and opportunities for 
us to pursue where additional resources ought to be applied and 
I think we, I think you are correct on that, and I appreciate 
your taking the time to come and testify, and Iknow it has got 
to be difficult for you to do so, but I know that perhaps thousands of 
mothers in the future will thank you for doing so, because they will 
not lose their sons.
    Ms. Furlong. I hope that is the case, thank you.
    Mr. Hoyer. Thank you, Mr. Chairman.
    Mr. Regula. Thank you. Thank you for coming. Our next 
witness is Pat Bridgman, associate director, Ohio Council of 
Behavioral Healthcare Providers.
                              ----------                              

                                           Tuesday, March 13, 2001.

            OHIO COUNCIL OF BEHAVIORAL HEALTHCARE PROVIDERS


                                WITNESS

PAT BRIDGMAN, ASSOCIATE DIRECTOR, OHIO COUNCIL OF BEHAVIORAL HEALTHCARE 
    PROVIDERS
    Ms. Bridgman. Thank you, Mr. Chairman, members of the 
committee. I am very pleased to be part of this shakedown 
cruise, as you so aptly put it. My name is Pat Bridgman, and I 
am the associate director of the Ohio Council of Behavioral 
Healthcare Providers. I will let Mr. Chairman explain it to 
you. The Ohio Council is a State-wide trade association which 
represents 170 private nonprofit organizations which provide 
addiction treatment and mental health services to over 500,000 
annually.
    Today I am representing the State Association Addiction 
Services, which is composed of 27 State-based associations of 
treatment and prevention providers and the Legal Action Center, 
a nonprofit law and policy firm that represents individuals 
recovering from and dealing with alcohol and drug problems and 
AIDS. We would like to express our sincere appreciation for the 
support that we have received from this committee over the 
years providing strong support for alcohol and drug treatment, 
prevention and research. It is essential to maintaining and 
improving the health, well-being and productivity of our 
nation. In the past few years, criminal justice, child welfare, 
education officials and county commissioners are waking up to 
the fact that investing in treatment and prevention services 
ultimately saves money on criminal justice, education, health 
and welfare cost. In the last 10 years, we saw a tremendous 
increase in criminal justice referrals to the addiction 
treatment system. Judges and county commissioners see value in 
diverting alcoholics and addicts to these programs where they 
offer help to make more positive life choices.
    More recently providers have seen a surge of referrals from 
local child welfare and TANF systems. Children service case 
workers are finally referring parents whose children are 
involved with their agency as a result of alcohol or drug 
addiction. As welfare caseloads are reduced, county officials 
look at how to help those who are still dependent on public 
assistance. While TANF provided an incredible funding stream 
for innovative programs that increased self-sufficiency and 
employment, the reality is in Ohio, Federal TANF funding cannot 
be spent on basic treatment services that Medicaid covers. Many 
of the referrals from the child welfare and welfare system are 
individuals who are not Medicaid eligible, but who want and 
need services to improve their lives.
    Another example of our success is the growing number of 
adolescents who are being referred by juvenile judges and 
schools for substance abuse and addiction treatment services. 
In Ohio, between 1993 and 1998, the number of adolescents 
admitted to treatment rose over sixty percent. Unfortunately, 
during that same time period, treatment capacity for 
adolescent-specific services did not change. In a recent 
conversation with Richard Hall, principal of Fairless Junior 
High and High School in Navarre, Ohio, he shared with me how 
addiction treatment and prevention services have played a 
significant role in improving their students' academic 
achievement over a 7-year period. Targeted services to high 
risk students resulted in increasing their graduation rate from 
65.5 percent which I believe was the third lowest rate in the 
State in 1991 to 87.5 in 1999.
    Ms. Bridgman. One hundred eleven students were adjudicated 
for serious discipline issues in 1991 compared to 24 in 1999 
and proficiency scores increased an average of 39 percent. This 
is one small example of how substance abuse programming 
combined with other appropriate interventions can make a huge 
difference to a community. Increased federal funding would 
ensure that this success continues and effective programming is 
replicated across the country.
    To provide appropriate capacity to these different systems 
we are recommending the following: $2,000,000,000 for Substance 
Abuse Prevention and Treatment Block Grant to continue closing 
that treatment gap; $350,000,000 for the Center for Substance 
Abuse Treatment, and $350,000,000 for the Center for Substance 
Abuse Prevention, including CSAP's High Risk Youth program; 
$694,000,000 for the Safe and Drug Free Schools and Community 
Act program, with increased funding allocated to the State 
Grants program to support community-based prevention 
initiatives--we also recommend this program not be combined 
with the 21st Century Community Learning Program; $341,000,000 
for research at NIAAA and $991,000,000 for research at NIDA.
    We are very grateful for generous federal funding increases 
that have been received in years past. We are, however, faced 
with a capacity crisis that needs attention. As we continue to 
improve treatment, retention, and outcomes, we need to be able 
to better accommodate juvenile judges, the Children's Service 
case workers, the County Human Services Department and, more 
importantly, that individual client who is ready to quit using 
alcohol or drugs. I am honored to speak with you today. Thank 
you.
    [The statement of Ms. Bridgman follows:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
    Mr. Regula. Thank you. What portion of your budget does the 
State of Ohio provide?
    Ms. Bridgman. It is approximately 40 percent.
    Mr. Regula. And the balance is Federal.
    Ms. Bridgman. Federal and Medicaid. We have been very 
blessed in Ohio to have strong State leadership. Director 
Flemming was in earlier. And Governor Taft's wife, Hope.
    Mr. Regula. She has spoken to me several times. Thank you 
very much.
    Ms. Bridgman. Thank you.
    Mr. Regula. Mr. Wu, you have a guest here to speak. Would 
you come up and bring your guest and introduce--I believe it is 
Dr. Bagby, director of Oregon Cancer Center.
    Mr. Wu. Thank you very much, Mr. Chairman, and 
congratulations on acceding to the Chair here.
    Mr. Regula. Thank you.
    Mr. Wicker [presiding]. Were you speaking to him or to me?
    Mr. Wu. Congratulations to you also. Ranking Member Hoyer 
and Mr. Jackson, I understand you have a long day and the 
essence of both wit and appropriateness is extreme brevity 
here. I just want to take this opportunity to introduce Dr. 
Bagby who is here representing the Oregon Health Sciences 
University, a fine institution in my district and a fine 
researcher in that institution. Dr. Bagby has been with Oregon 
Health Sciences University for over 25 years and has earned an 
international reputation for his research in the areas of bone 
marrow diseases for children and adults, particularly Fanconi 
anemia. With that I will let Dr. Bagby present his testimony 
from here.
                              ----------                              

                                           Tuesday, March 13, 2001.

                   OREGON HEALTH SCIENCES UNIVERSITY


                                WITNESS

DR. GROVER BAGBY, DIRECTOR, OREGON CANCER CENTER
    Dr. Bagby. Thank you, Mr. Wicker, and thank you, Mr. Wu. My 
name is Grover Bagby. I am the director of the Oregon Cancer 
Center at Oregon Health Sciences University. Like many academic 
centers, we are focused on a four-part mission; education, 
clinical care, research, and community service. So we are 
pretty much immersed in the business of health care, from the 
laboratory bench to the bedside, in the classroom and in 
communities across the State of Oregon.
    In 1960, Senator Richard Neuberger was diagnosed with 
testicular cancer and at that time it was tantamount to a death 
sentence. Today, because of research at academic health 
centers, 91 percent of men with widespread testicular cancer 
can be cured. One of Oregon Health Sciences University's most 
inspirational patients, Lance Armstrong, is one of thousands of 
men who have not only beaten the disease but they have returned 
to their families in entirely good health and returned to their 
jobs; obviously, in his case, in pretty good health and at the 
top of his form.
    This is a pretty important time for medical research now. 
The objectives of the genome projects have been largely 
realized and the information from these projects can be applied 
in exciting new ways to determine what these 30,000 genes we 
have actually do. High throughput screening methods now can 
tell us about the precise on-or-off activity of 30,000 genes in 
any given cell in our bodies. We can apply these principles to 
cells from patients with diseases and to discover the molecular 
nature of disease, and, having done that, actually begin to 
develop targeted molecular therapies. Based on my colleague 
Brian Drucker's experience with the hot new anti-leukemia agent 
STI 571, it seems very clear and unambiguous that targeted 
therapies are going to be less toxic and clearly more 
effective. Most importantly, an understanding of the molecular 
basis of many diseases will lead to strategies by which they 
can be prevented in the first place.
    I have been carrying out research for 25 years at Oregon 
Health Sciences University, and there has never been a year 
that has been this exciting since the publication of the genome 
information and the advance of technology. This is precisely 
the time that NIH support should increase, and we are very 
pleased about the goal of doubling the NIH budget over the next 
5 years. To capitalize on these opportunities, academic health 
centers needs to build and renovate modern laboratories and 
clinical research facilities. In the current economic 
environment, academic health centers are clearly 
undercapitalized and there is no NIH funding mechanism to 
renovate and build these facilities. OHSU has been able to 
address urgent space needs with some help from private 
resources, but we believe there should be some additional 
flexibility to use NIH funds for facilities.
    Another challenge faces academic health centers and that is 
the shortage of nurses. In 3 to 5 years we expect to begin to 
see large-scale retirements of both nurses and nursing faculty. 
At OHSU, we expect 45 percent of our nursing faculty to retire 
within the next 4 years. If we want to attract future 
generations of nurses, we have need to significantly augment 
our educational infrastructure and we need to reduce the 
financial burden of nursing education and enhance economic 
incentive for careers in nursing. The aging nursing population 
reflects society as a whole. At most hospitals, care for 
seniors is typically fragmented and driven along traditional 
speciality lines. At OHSU, we are developing a Center for 
Healthy Aging to address the growing demand for aging services 
and to provide these services in an innovative and 
comprehensive fashion. Working with the Administration on 
Aging, our Center is promoting this approach by developing 
multidisciplinary and preventive care and by providing a 
continuum of coordinated health services, and we ask the 
subcommittee to encourage AOA to support this partnership.
    Academic health centers, like all health providers, face 
challenges; but we are very excited about the future and we are 
ready to translate cutting-edge research to the bedside.
    Mr. Chairman, OHSU welcomes this committee's business on 
this subject. We have got some exciting issues on our plate and 
we know you have exciting issues on your plate as well. We know 
what we can accomplish with your help. Thank you very much.
    [The statement of Dr. Bagby follows:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
    Mr. Wicker. Thank you very much, Doctor. Do we have 
questions for either one of the panel?
    Mr. Hoyer. I would simply make the observation that I have 
had the opportunity of being with Congressman Wu out in his 
district. I know we visited at the university and it was a very 
deep compliment and very hard work on behalf of the Oregon 
Health Sciences University and health care research. I want to 
thank him for his latest effort and thank the Doctor for his 
good work as well.
    Mr. Wicker. Doctor, let me just ask--I notice that you are 
interested in the infrastructure issue and you feel that your 
facility, your Center, could better compete if you had some 
flexibility with regard to construction money out of the NIH. 
Did I state that correctly?
    Dr. Bagby. Yes.
    Mr. Wicker. I am going to give you an opportunity to 
comment about your impressions of the peer review process with 
regards to reviewing your grant applications the first time, 
and then the second time, and things of that nature. Do you 
feel that there is room for improvements there?
    Dr. Bagby. That is a complicated question.
    Mr. Wicker. You have 30 seconds to answer that. Actually we 
do have time to hear you on that.
    Dr. Bagby. I have spent 8 years on two NIH study sections 
and chaired one study section where we reviewedgrants, and it 
was a daunting experience largely because we knew that many grants were 
not going to be funded that deserved to be funded. So if the question 
is is the peer review process frustrating, yes, it is very frustrating 
and it is a hard--it is an extraordinarily hard experience for those of 
us who actually have to review the process.
    If you are talking about peer review of infrastructure 
enhancements, I think the same principles ought to apply. I 
believe there needs to be clear-cut review of any application 
for infrastructure enhancements by any university. That would 
be a much more difficult task, but I believe that with some 
additional support the NIH could actually implement that kind 
of thing.
    Mr. Wicker. Thank you very much.
    Mr. Hoyer. Mr. Wicker, if I may make a comment on that, Joe 
Hurley was a member of this committee, a member from 
Massachusetts, probably as steeped in NIH funding and the 
intricacies of extramural grants as anybody that I have served 
with on this committee in the last 18 years. He was convinced 
and I am convinced, I think the committee is convinced, that 
the pay lines on extramurals are so low that we are missing 10 
to 15, maybe as high as 20 percent in some instances of very 
good science. Now, if we increased most pay lines--for all of 
you who are listening, it simply means the percentage of grants 
that are funded. Some of our institutes, we are down in the 
mid- to high teens. Now, we have gotten that up as a result of 
more funding. But I still, am I correct, we are probably in the 
high 20s or low 30s now in most grants, which means we are 
having 10 to 15 percent of very good science that we are simply 
unable to fund. Would you agree with that based upon your 
experience?
    Dr. Bagby. Yes, sir, Mr. Hoyer, I would.
    Mr. Hoyer. Roger, simply pointing out that the peer review 
process, because it is human beings involved, it is obviously 
subject to a lot of different pressures and it is a tough job, 
but at bottom they see a lot of good science that then can 
fund.
    Mr. Regula [presiding]. Thank you, Doctor.
    Next I want to call Kelly Buckland, a member of the 
Governing Board of the National Council on Independent Living.
    We will suspend for a minute. There are those who would 
like to be here for your testimony, and if you do not mind we 
will go on to the next person while your audience gets in here. 
It will save us time, so would you mind suspending for 5 
minutes? Just stay there, okay?
    Dr. Cerulli, the president of the Digestive Disease 
National Coalition. Dr. Cerulli.
                              ----------                              

                                           Tuesday, March 13, 2001.

                  DIGESTIVE DISEASE NATIONAL COALITION


                               WITNESSES

DR. MAURICE A. CERULLI, PRESIDENT, DIGESTIVE DISEASE NATIONAL 
    COALITION, ACCOMPANIED BY NANCY NORTON, CHAIRMAN, DIGESTIVE DISEASE 
    COALITION
    Mr. Cerulli. Good morning, Mr. Chairman, and members of the 
subcommittee. Thank you for the opportunity to testify today. I 
am Dr. Maurice Cerulli a practicing gastroenterologist and 
chief of GI at the Brooklyn Hospital Center, and president of 
the Digestive Disease National Coalition. DDNC is a voluntary 
organization comprised of 25 professional and patient 
organizations, with a common goal of improving the health of 2 
million Americans suffering from digestive disorders costing 
$60 billion annually. We would like to thank the subcommittee 
for past supportive digestive disease research at NIH and CDC. 
We are in the home stretch of the initiative to double the NIH 
budget over a 5 year period. This requires a 16.5 percent 
increase for fiscal year 2002.
    I would like to highlight items from my submitted 
testimony:
    Inflammatory Bowel Disease: One million Americans suffer 
from Crohn's disease and ulcerative colitis. We ask the 
subcommittee to continue its support of IBD research at NIDDK 
and NIAID at a level commensurate with the overall increase for 
each institute. DDNC, in its part in the Crohn's and Colitis 
Foundation of America, encouraged the CDC to initiate a 
nationwide IBD surveillance and epidemiological study.
    Endoscopic Research: Without surgery, using endoscopes, we 
can find bleeding ulcers and stop the bleeding. We can cut out 
polyps and prevent colon cancer. The Clinical Outcomes Research 
Initiative, CORI program, links more than 50 centers to assess 
outcomes of endoscopic therapies. The gastroenterology 
community looks forward to working with NIDDK to expand its 
endoscopic research program, and we encourage the subcommittee 
to support this important effort.
    Hepatitis C: Four million Americans are infected. CDC 
estimates that the death rate will increase to 34,000 by 2010. 
It accounts for more than half of all liver transplants and is 
the leading cause of all liver cancer. The DDNC joins with the 
liver disease community in recommending an increase of 
$17,000,000 in the CDC research prevention centers and 
$15,000,000 increase for the CDC prevention strategy program to 
expand to 50 States. We encourage the subcommittee to 
facilitate the distribution of Surgeon General David Satcher's 
``Dear Citizen'' letter to all American citizens.
    Colorectal Cancer Prevention: Colorectal cancer is the 
second leading cause of cancer-related deaths; 56,000 men and 
women last year. Although it is preventable and curable when 
detected early, GAO has recently reported that less than 10 
percent of Medicare beneficiaries underwent any screening. We 
are convinced that a significant impact on screening rates can 
be made with adequate resources, as seen for breast cancer. 
DDNC encourages the subcommittee to provide CDC with 
$15,000,000 for this program.
    Pancreatic Cancer: Last year, 28,200 Americans died from 
this disease. It is increasing and deadly.
    Mr. Chairman, thank you for the opportunity to testify. I 
would now like to introduce the chairman of the DDNC. This is 
Nancy Norton, the president and founder of the International 
Foundation for Functional GI Disorders.
    Ms. Norton. Mr. Chairman, one chronic digestive disease 
that concerns us greatly is Irritable Bowel Syndrome, a 
disorder that affects an estimated 35 million Americans. Many 
people with IBS suffer in silence, unable to speak about the 
disease even to their family members. The medical community has 
been slow in recognizing IBS as a legitimate disease and the 
burden of illness that is associated with it. Patients often 
see several doctors before they are given an accurate 
diagnosis. Once a diagnosis is made, medical management is 
limited because the medical community still does not understand 
the physiologic mechanism of the disease.
    Living with IBS is a challenge. There is a loss of 
spontaneity when symptoms may intrude at any time. Plans may 
often need to be changed. IBS is unpredictable. One can wake up 
in the morning feeling fine, and within a short time encounter 
abdominal cramping to the point of being doubled over in pain 
and unable to function. The unpredictable bowelsymptoms may 
make it next to impossible to leave home. It is difficult to ease pain 
that may repeatedly occur periodically throughout the day. One becomes 
reluctant to eat, for fear that just eating a meal will trigger 
symptoms all over again. IBS has a broad and significant impact on a 
person's quality of life. It strikes people from all walks of life and 
results in a significant toll of human suffering and disability.
    While there is much we don't understand about the causes 
and treatment of IBS, we do know that IBS is a chronic complex 
of symptoms affecting as many as 1 in 5 adults. In addition, it 
is reported more by women than men. It is the most common GI 
diagnosis among gastroenterology practices in the United 
States. It is the leading cause of worker absenteeism in the 
United States. It costs the U.S. Health care system an 
estimated $8,000,000,000 annually.
    Mr. Chairman, much more can be done to address the needs of 
nearly 35 million Americans. We understand the challenging 
budgetary constraints that this subcommittee is operating 
under, yet we hope you will carefully consider the tremendous 
benefit to be gained by supporting research and education for 
IBS both at NIH and CDC. Thank you Mr. Chairman.
    Mr. Regula. Thank you very much for your testimony.
    [The statement of Dr. Cerulli follows:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
    Mr. Regula. Okay Mr. Buckland, I think we are ready to go 
with you. Thank you for coming.
                              ----------                              

                                           Tuesday, March 13, 2001.

                 NATIONAL COUNCIL ON INDEPENDENT LIVING


                                WITNESS

KELLY J. BUCKLAND, MEMBER, GOVERNING BOARD, NATIONAL COUNCIL ON 
    INDEPENDENT LIVING
    Mr. Buckland. Thank you, Mr. Chairman. Good morning, Mr. 
Chairman, and distinguished members of the committee. My name 
is Kelly Buckland. I would like to start this morning by 
thanking this committee for their strong commitment to 
independent living and last year's appropriation of an 
additional $10,000,000. Unfortunately, because of the way the 
Federal funds for independent living are currently distributed, 
10 States and 2 territories sought no increase in funding at 
all, and many more received a very small increase from the 
additional funds provided by this committee.
    As you may recall, last year I presented you with a plan to 
increase funding for Centers for Independent Living by 
$25,000,000 a year over 3 years. Today, I am requesting that 
you put us back on schedule with this plan by increasing CIL 
funding by $40,000,000 in this year's appropriations. I am not 
making this request as the director of a Center for Independent 
Living that might benefit from such an appropriation. Instead, 
I am presenting as a member of the board of directors of the 
National Council on Independent Living, as the executive 
director of the Idaho State Independent Living Council, and as 
a person committed to increasing the availability of these 
valuable and highly cost-effective services for people with 
disabilities.
    We had hoped to present this committee with updated 
information about CILs in America. However, despite repeated 
attempts to obtain updated information beginning a year ago, we 
have been unable to get a complete accounting of this 
information from the Rehabilitation Services Administration. 
Therefore, my testimony will be based on information from 
fiscal year 1998. We commit to you that as soon as we get 
complete 1999 figures from RSA, we will provide this 
information to this committee.
    The centers for independent living are nonprofit, 
nonresidential corporations which are administered, staffed, 
and managed by people with disabilities. In 1998, almost 66 
percent of the staffs of centers for independent living were 
people with disabilities, including those serving in 72 percent 
of the decision making positions. When we say ``consumer 
controlled,'' we mean it. Currently there are at least 340 
centers for independent living, with 224 additional satellite 
locations. Of these, 229 centers and 44 satellites are funded 
with dollars authorized through the Rehabilitation Act.
    Investing in centers for independent living makes sense. 
With the nearly $40,000,000 centers received in Federal funding 
in 1998, they were able to attract an additional $144,000,000 
through grants, contracts, State funds, and a variety of other 
creative funding sources. In other words, we will make the 
taxpayer money work for us and for our consumers.
    Centers assist people with disabilities so they can live 
more independently. In 1998, CILs responded to almost 340,000 
requests for information and referral; provided over 54,000 
individuals with peer counseling services; 50,000 people 
received assistance finding housing; 34,000 acquired personal 
assistance services; 33,500 required transportation services; 
over 54,000 received independent living skills training; and 
over 6,000 became employed. All of this at an average cost of 
$1,655 per person per year. The centers also provide systems 
change activities that result in sweeping improvements in the 
way that needs of people with disabilities are met. In 1998, 
centers helped over 1,400 people get out of nursing homes and 
prevented over 14,500 from going into nursing homes. This saved 
taxpayers $318,000,000 in just one year.
    Here are some examples of the personal impact of the 
Centers for Independent Living. A man in Fulton, Mississippi 
was injured in an automobile accident and sustained a spinal 
cord injury. This gentleman was told he would need care in a 
nursing home at a cost of $30,000 per year. A staff member from 
the satellite center helped him find a wheelchair and helped 
him get financial assistance from the State's Spinal and Head 
Injury Fund. Today, this man is living with his elderly mother 
and receiving 4 hours a day of personal assistance at an annual 
cost of less than $8,000 per year.
    A Center for Independent Living in New York provided 
information and advocacy services to a family whose child was 
facing removal from a home and community-based service. Without 
waiver support, the child would be placed in an inpatient 
psychiatric unit. With the assistance of the CIL, the parents 
successfully appealed the removal of services. Assuming an 
average Medicaid waiver cost of about $40,000 plus CIL costs of 
$1,000, the saving to the taxpayers is about $96,500 per year.
    If the full $75,000,000 increase were appropriated:
    In Ohio, additional funds will greatly expand the ability 
to serve people currently underserved. Currently, there are 9 
centers for independent living serving 41 of Ohio's 88 
counties, with well over half the counties unserved by a CIL. 
Additional funds would be used to bring CIL services----
    Mr. Regula. You would be a counseling and an education 
program; is that correct?
    Mr. Buckland. Mr. Chairman, the centers for independent 
living are funded under Title 7, Part C of the Rehabilitation 
Act. It is part of the education funding, yes.
    Mr. Regula. But people would get educated on how they could 
live independently and be counseled on how they could achieve 
their goal independently. Is that a correct summaryof what the 
CILs do?
    Mr. Buckland. Mr. Chairman, that is a fair summary. 
However, I would add that they also hook them to other services 
in the community that assist them to live independently in the 
community. The peer support is probably the really major 
footing of independent living, and with it is people with 
disabilities working with other people with disabilities and 
letting them know how they were able to live independently.
    Mr. Regula. So they share this experience and profit from 
others' experience; is that a fair statement?
    Mr. Buckland. That is true, Mr. Chairman.
    [The statement of Mr. Buckland follows:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
    Mr. Regula. Any questions?
    Mr. Hoyer. Mr. Chairman, briefly. First of all, obviously, 
as someone who is involved with the Americans with Disabilities 
Act, our objective was to make sure that to the extent 
possible, those with disabilities were fully integrated and 
fully able to have the opportunities that America offers. This 
is an important component of that.
    Let me ask you something. In your statement here regarding 
the CILs, you indicate that the CIL network reaches less than 1 
percent of all people with significant disabilities in the 
United States. If we funded at the levels you request, do you 
know what percent we would be reaching?
    Mr. Buckland. Mr. Chairman, Mr. Hoyer, unfortunately I 
can't answer that question, but I would be glad to get back to 
you with where we would estimate that would get us to. And by 
the way, I would add that there are two centers in your 
congressional district. There is one by the name of Living 
Independently for Everyone, and Independence Now. And we would 
encourage you to maybe visit one of those centers and find out 
firsthand what they do with people with disabilities.
    Mr. Hoyer. Thank you. Thank you, Mr. Chairman.
    Mr. Regula. Thank you very much for coming, and I know you 
speak for a lot of people and their concerns and we appreciate 
that very much.
    Mr. Buckland. Thank you very much. I really appreciate the 
opportunity to testify today.
    Mr. Regula. We have with us another distinguished member of 
our committee, Mr. Cunningham, who I think would introduce one 
of our guests this morning, Mr. Goldstein, Dr. Goldstein, 
professor of pharmacology, Department of Cellular and Molecular 
Medicine.
    Mr. Cunningham. Thank you, Mr. Chairman. I personally know 
Dr. Goldstein. My daughter went to Torrey Pines High School, 
and Dr. Goldstein is with the department at the University of 
California, San Diego, where my daughter interned, since she 
was a freshman in high school, doing genetic gene splicing. She 
is now at Yale working on a Ph.D./M.D.
    Dr. Goldstein's Ph.D. Is in genetics. He got it from the 
University of Washington, Seattle. He did his postdoctoral work 
at the University of Colorado, Boulder, and Massachusetts 
Institute of Technology, commonly known as MIT. He is currently 
a professor in the department of pharmacology and the 
department of cellular and molecular medicine in the University 
of California. Which, by the way, it is 75 degrees in San Diego 
today.
    Mr. Regula. No commercials.
    Mr. Cunningham. World's finest city.
    His testimony is attached. He is a specialist on stem cell 
research, although today his talk is directed more towards 
basic research, cell research. Doctor, welcome. We are happy to 
have you here. He has been a long family friend.
                                           Tuesday, March 13, 2001.

               JOINT STEERING COMMITTEE FOR PUBLIC POLICY


                                WITNESS

DR. LAWRENCE S.B. GOLDSTEIN, PROFESSOR OF PHARMACOLOGY, DEPARTMENT OF 
    CELLULAR AND MOLECULAR MEDICINE, INVESTIGATOR, HOWARD HUGHES 
    MEDICAL INSTITUTE, UNIVERSITY OF CALIFORNIA, SAN DIEGO
    Dr. Goldstein. Thank you, Congressman, I appreciate it.
    Mr. Chairman, members of the subcommittee, I am here today 
representing the Joint Steering Committee for Public Policy, 
which is a coalition representing more than 20,000 scientists 
working in the fields of biochemistry, cell biology, molecular 
biology and genetics. I am here to urge you to provide the 
fourth installment in the effort to double the NIH budget in 5 
years. I want to thank you, the members of this important 
subcommittee, and Members of Congress, for your support of NIH 
over the last 5 years. I want to give a special thank-you to my 
own representative, Congressman Randy ``Duke'' Cunningham who 
has been a visionary and forceful congressional advocate for 
biomedical research. As you know, the NIH is the major source 
of funds for critical basic research in laboratories in the 
United States studying Alzheimer's disease, cancer, diabetes, 
heart disease, and many others. This investment is a critical 
element required to translate the promise of scientific 
discovery into better health. Your understanding and 
stewardship of this valuable national priority sustains hope 
for the many millions of our friends and family members 
afflicted with debilitating or fatal diseases.
    The Joint Steering Committee, as well as the basic 
biomedical research community, is supporting an appropriation 
for NIH in fiscal 2002 of $23.7 billion, an increase of $3.4 
billion, or 16.5 percent. This represents the fourth step 
towards the stated bipartisan goal of doubling the NIH by 
fiscal year 2003. We are delighted that President Bush has 
taken the strong first step towards this goal by including a 
$2.8 billion or 13.8 percent increase for the NIH in its fiscal 
year 2002 budget proposal. We fully understand under the 
current budget agreement there are caps in place that would 
make our goal of 16.5 percent difficult to achieve. Despite the 
difficulty, we believe that we must continue our aggressive 
pursuit of new scientific opportunities and work towards 
achieving the goal of doubling the NIH budget. You may ask, why 
now? The answer is that Congress' past support for NIH has led 
us to a dawn in new science. We believe that the next few 
decades will be know as the golden age of medical science as 
the pace of discovery and application to human health will be 
unprecedented in our history.
    We are now just beginning to glimpse the major discoveries 
that are coming that will let us treat and perhaps cure, many 
previously baffling diseases. For example, drawing from my own 
experience, I can tell you that past support for the NIH and 
for my colleagues' fundamental work on cell division has led to 
the development of a new class of drugs for cancer that we hope 
will begin clinical trials thisyear. Similarly, NIH support for 
my work on brain cells is leading to the development of new ideas about 
how we might fight and win our battle against Alzheimer's disease. My 
story is repeated thousands of times over among the many scientists in 
the American research community who seek to understand the basic 
mechanisms of life and apply that understanding to the battle against 
disease. We realize that sometimes scientific research can appear to be 
expensive. Indeed, to capitalize as quickly as possible upon 
groundbreaking discoveries sometimes requires new and expensive 
experimental instrumentation such as gene chips and supercomputers. 
Yet, history has taught us that these investments are repaid many times 
over in reduced health care costs and better health and productivity of 
our citizens. Indeed, I and many others, believe that a critical part 
of the solution to the difficult problems of Medicare lies in more 
research and better understanding of degenerative diseases of the 
elderly. For your use, I have submitted for the record several 
editorials that I have written that explore these issues in more depth.
    Currently, we can identify a number of areas where rapid 
progress is being made but where even greater reward will come 
from increased investment. For example, there are tremendous 
opportunities in the application of chemical and physical 
methods to biomedical research, including the development of 
ever more sensitive and less invasive imagining methods.
    Similarly, there are tremendous opportunities as a result 
of the decoding of the 40,000 genes in the human genome. 
Already, the genetic basis for many serious diseases have been 
identified, others are yet to be found, but studies are already 
using the new information for the development of better forms 
of diagnosis, therapy, and even cure. However, but there is 
more to come. Our challenge now is to decipher the functions of 
all these genes, the signals and environmental cues that 
control them, and the molecular circuitry that coordinates the 
activity of those 40,000 players in health and disease.
    Another important opportunity comes from recent advances in 
cell and developmental biology and neuroscience which help us 
to initiate an era in which tissue and cellular therapy will be 
used to treat diabetes, spinal cord injury, Parkinson's disease 
and others. Before the promise of tissue regeneration and 
cellular replacement therapy becomes a reality, there is a 
great deal of important research that must be done. We can meet 
these challenges but only with your continued support through 
expanded investment in medical research.
    Finally, where will the next generation of our scientists 
come from? We must continue to support the training of our 
young scientists and physicians. Yet, this essential funding of 
the NIH has only grown slightly in the last few years and must 
increase to be competitive and to continue to attract the best 
and brightest in scientific research.
    Mr. Chairman, thank you. It has been an honor to testify. I 
will be happy to answer any questions.
    [The statement of Dr. Goldstein follows:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
    Mr. Regula. Thank you. Mr. Cunningham, do you have any 
comments or questions?
    Mr. Cunningham. Dr. Goldstein, one of the comments that I 
have heard from people that want to fund the NIH less is that 
research can't spend the money that we are providing. Secondly, 
they can always--people can spend money, including my 
daughters, but can they do it wisely and direct it towards the 
medical research that is needed?
    Dr. Goldstein. That is a very good question, Congressman. 
And I can tell you, having served on scientific review panels 
and grant review panels, that we still miss important 
opportunities for good science that could be funded if we have 
the resources. I have many young colleagues that are trying to 
get their labs started, and there are indeed many good 
opportunities and ideas out there that remain unfunded. So I 
think the opportunities are there.
    Mr. Cunningham. Secondly, I know you are on your way to 
Germany to lecture. Are there other nations involved in stem 
cell research?
    Dr. Goldstein. Yes. The British are moving ahead very 
aggressively. Personally, I would hate to see the most 
important discoveries made in England as opposed to the United 
States, because I think we have a great source of scientific 
capital here and we can move more quickly if we are unleashed.
    Mr. Cunningham. Mr. Chairman, I am pro-life and I have a 
hard time with stem cell research, but I want to tell you that 
one of the questions I want to ask Dr. Goldstein is if he 
thinks we can handle the ethical and moral questions. I know if 
I had a child that had diabetes, if I had a son that was 
paralyzed, or a grandparent that had Alzheimer's or 
Parkinson's, and I could stop that through the exploration of 
stem cell research, then I would do anything, like most people 
would do, to stop it. When a child has to inject--you have to 
take blood five or six times a day from the finger of a 
juvenile that has diabetes. And if you could inject pancreatic 
cells into that child, as a parent there would be nothing that 
I wouldn't do. And that is part of the reason that I support 
stem cell research.
    But I also have concern. I don't want the wholesale 
marketing of pluery or totipotent cells, and as I understand 
it, they are using--if, say, a woman is going to have chemo or 
radiation, she may donate her eggs at a certain point--that 
those eggs are cast out, they are thrown away. And instead of 
throwing those cells away and having no use whatsoever, why 
can't we save life with that, or even the potential life that--
and the quality of life.
    And can you assure us that the scientific world would 
adhere to those things? I know if we just do it privately, they 
are going to do it anyway. But that is what has kind of swayed 
me over. I know the pro-life community criticizes it. It is 
something I believe in and I think it is one area that we can 
give this Nation and people that have disease and illness, that 
we can really make something from the research. I think we need 
to do it both from, like, umbilical cord, but also from the 
totipotent cells.
    Dr. Goldstein. That is a very good question, Congressman. 
Let me say two things. First of all, there is no question that 
there are urgent medical needs. There are severely ill people 
that we can help if we proceed in this area. Second, I believe 
we can proceed ethically, responsibly and adhering to publicly 
agreed upon guidelines. In fact, history supports that point of 
view. If you go back to the seventies, there was a great deal 
of controversy over the use of recombinant DNA research. What 
emerged was that because the Federal Government funded the 
work, the Federal Government was able to participate in the 
development of guidelines to guide that research in its 
conduct. Those guidelines were followed quite stringently by 
the academic community, and then the private sector fell into 
line behind those guidelines, and ultimately other countries 
did. So the Federal Government can set the agenda better by 
participating in a responsible area rather than turning its 
back on the area.
    Mr. Cunningham. Thank you, Dr. Goldstein. Thank you, Mr. 
Chairman.
    Mr. Regula. Thank you.
    Our next witness is Vicki Modell and she will be introduced 
by our colleague, Mr. Hoyer.
    Mr. Hoyer. Thank you very much, Mr. Chairman. Fred will 
stay in the background, as he usually does, but her husband 
Fred is here as well. Vicki, welcome to the committee. Mr. 
Chairman, the Modells lost their son at a too-young age some 
years ago as a result of immunodeficiency disease. And since 
then the Modells and the Foundation have been an incredible 
force for focusing public and private attention on the 
necessity to do research and to intervene so that we might 
overcome this deadly condition.
    Vicki, I want to thank you on behalf of all the committee. 
I think you have been as faithful a witness as this committee 
has had over the years and you continue to burn brightly as a 
beacon for all of us to follow. I know Nita Lowey wanted to be 
here to welcome you as well. I guess Nita is your Member of 
Congress, but I feel like I am sort of your Member of Congress 
because I have known you for so long. So, welcome to the 
committee and we thank you for your testimony.
                              ----------                              

                                           Tuesday, March 13, 2001.

                       JEFFREY MODELL FOUNDATION


                                WITNESS

VICKI MODELL, COFOUNDER AND VICE PRESIDENT, JEFFREY MODELL FOUNDATION
    Ms. Modell. I thank you so much for your very, very caring 
words. I always get a little emotional before I begin. Without 
the support and encouragement of this committee, quite frankly, 
I don't know that Fred and I would have the courage to keep 
going on this journey that we have been on for 15 years. So I 
thank each and every one of you for that. Thank you very, very 
much. Good morning, Mr. Chairman and members of the committee. 
I am honored to have the opportunity to speak to you on behalf 
of the Jeffrey Modell Foundation, a foundation that my husband 
Fred and I created after the death of our son Jeffrey 15 years 
ago. Jeffrey died of something called primary immunodeficiency. 
It is a group of more than 100 genetics disorders in which the 
immune system does not respond properly. In America there are 
500,000 people diagnosed, mostly children, and so few have 
heard of it, but remarkably the disorders affect more of our 
children than cystic fibrosis, childhood leukemia, and lymphoma 
combined.
    Perhaps, most importantly, we now know from medical experts 
at the NIH and the WHO that there are at least another half a 
million cases of PI in the United States that are undiagnosed, 
misdiagnosed, or underdiagnosed. The financial impact, 
devastating emotional hardships from repeated hospitalizations, 
visits to specialists, and medications cost this health care 
system well over $10,000,000,000 a year.
    This is why we have launched a national physician education 
and public awareness campaign. I am here to report that the 
first phase of this campaign, because of your encouragement, in 
a partnership with the NIH pharmaceutical industry and the 
American Red Cross, is fully underway. We were particularly 
proud of our new ``10 warning signs'' poster, which includes 
the imprimaturs of all those partners and has been distributed 
to more than 50,000 pediatricians nationwide. In fact, it has 
been received enthusiastically worldwide in 19 countries and 14 
languages. Also with the support of this committee, we have 
entered into six research collaborations with the NIH, and I am 
happy to report that the research is flourishing, and I have 
detailed that in my written testimony.
    However, there is a serious public health issue here. 
Individuals with undiagnosed PI are reservoirs of severe 
infections, bacterial, viral and fungal. Undiagnosed and 
unprotected, they become a delivery system of infection to the 
general public, and that would include a threat to schools, day 
care centers, the workplace and even hospitals. Delayed 
diagnosis and insufficient treatment leads to increased 
morbidity, mortality, not to mention inflated medical costs and 
a miserable life of suffering for those patients. For example, 
one hospitalization with pneumonia is more costly to our health 
care system than one year of gamma globulin infusions. PI is a 
serious health concern, and now with the encouragement of this 
committee, the CDC is prepared to take action. We spent a full 
day meeting with them earlier this month, and I am pleased to 
report that we have agreed to a significant partnership in 
which the CDC and the foundation will each fund a research 
fellow to work for one year and fund a consensus conference, 
bringing together leading researchers, ethicists, clinicians, 
public health experts, insurance executives, and community 
leaders to address the public concerns. This collaboration is a 
major breakthrough and will provide the scientific framework 
designed to advance physician education. Our foundation has set 
aside substantial funds committed to this campaign.
    With all money that we raise and all the heart we pour into 
this effort, we are still a grass-roots organization. The 
campaign is a daunting task and we simply cannot undertake this 
effort without a meaningful expenditure of funds from 
government. We have never come here looking for a handout, but 
we do need a hand. Together with our partners at CDC, we are 
going to need the resources put in place by this committee to 
enable us to reach physicians, participants, school nurses, 
HMOs, medical schools. Education is critical. The diagnosis 
must be made early because, quite simply, it is a matter of 
life and death. I hope and I pray that you will be able to 
respond positively as the committee has done for us always in 
the past. Thank you very much for allowing me to be here.
    [The statement of Ms. Modell follows:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
    Mr. Regula. Thank you. Mr. Hoyer, do you have any 
questions?
    Mr. Hoyer. No, I have no questions. Again, thank you, Vicki 
and Fred and the Modell Foundation. That is one of the most 
successful small foundations, small only if you relate it to 
Carnegie or something, but it is a very effective organization 
because of Vicki and Fred's leadership.
    Mr. Jackson. Mr. Chairman, I have an observation or two. I 
do plan when the director of the CDC comes before our committee 
to ask the director a number of questions about follow-through, 
given that this has been an issue that has been before our 
committee in the past, particularly in low-income areas, not 
only in primary or secondary health care facilities but in 
community-based health care organizations. There is simply no 
reason why every physician in this country does not have a copy 
of the 10 warning signs posters and a number of the important 
warning signs information that is necessary. Things, Mr. 
Chairman, as basic as a number of ear infections, recurrent ear 
infections, and a number of other recurrent treatable diseases 
are clearly warning signs that many of these children simply 
need a small prick in their finger for a small blood test so 
that we might determine whether or not something else is 
developing in their immune system.
    Five hundred thousand persons, Mr. Chairman, is 
asignificant number. Mrs. Modell has been before this committee a 
number of times in the last 15 years. There appears to be a follow-
through problem and we should explore that in further hearings.
    Mr. Regula. Thank you.
    Ms. DeLauro. Mr. Chairman, I just want to welcome Vicki and 
Fred Modell and look forward to seeing you later today. You do 
an incredible job, and we applaud your work and want to work 
with you.
    Ms. Modell. Thank you. Thank you for all you have done for 
us.
    Mr. Regula. Thank you for coming.
    Next is Mr. Jon Jenney, the project director, Northeastern 
Ohio Area Health Education Center. Mr. Jenney.
                              ----------                              

                                           Tuesday, March 13, 2001.

                     AREA HEALTH EDUCATION CENTERS


                                WITNESS

JON JENNEY, PROJECT DIRECTOR, NORTHEASTERN OHIO AREA HEALTH EDUCATION 
    CENTER
    Mr. Jenney. Mr. Chairman and members of the subcommittee, I 
am pleased to present testimony today on behalf of the National 
AHEC Organization. I am the project director of the 
Northeastern Ohio Area Health Education Center located in 
Rootstown and a member of the National AHEC Organization. We 
are a professional organization representing both AHECs and 
health education and training centers, HETCs, with a common 
goal; and that is to enhance access to quality health care, 
particularly primary and preventative care through community-
based academic partnerships. For almost 30 years AHECs, in 
partnership with local, State, Federal, and educational 
institutions have provided clinical training opportunities to 
medical and allied health professions and students in 
underserved communities. Currently there are 40 AHEC programs 
and more than 160 AHEC centers.
    AHEC programs concentrate on four areas:
    First, developing health care career recruitment programs 
in underserved areas for underrepresented and disadvantaged 
students, which provides hands-on science and math instruction 
and exposure to local health professionals. Not only is this an 
educational opportunity but an encouragement for young people 
to enter health care careers.
    Second, AHEC oversees the community-based training of 
primary care students and residents, especially in areas with 
health shortages. AHECs are pioneers in this effort. In 1998, 
AHECs provided programs to approximately 15,000 health care 
students in underserved areas.
    Additionally, AHECs provide information support and 
technical assistance to health care professionals to ensure an 
opportunity for continuing education. In 1999, AHECs provided 
continuing education training for almost 175,000 participants.
    Finally, AHECs promote healthy lifestyles within 
communities through educational outreach initiatives that are 
responsive to local needs.
    One example of an AHEC center is the Canton Area Regional 
Health Education Network which operates primary care projects 
in partnership with the Kent State College of Nursing. Primary 
care nurse practitioners, medical students, and allied health 
students provide a range of health care screening for disease, 
education and follow-up care to migrant workers and their 
families in Hartville. In Ohio, the State matches the Federal 
funds dollar for dollar. Annually, 15,000 medical students 
nationwide receive clinical training at AHEC-sponsored sites. 
These sites also provide community-based training for 15,000 
allied health profession students. Eight HECTs provide training 
experience for health profession students and local providers 
in border States--Florida and other regions in extraordinary 
need.
    HECTs work to improve access to health care and improve the 
diversity and cultural confidence of the health care workforce. 
One in five U.S. citizens live in border counties, and within 
these areas only 62 primary care physicians per 100,000 reside 
in border counties, compared to 105 per 100,000 nationally. In 
the state of Kentucky in one year, over 6,000 disadvantaged 
students were involved in programs focusing on healthy 
lifestyle, violence prevention, and dental health. This was 
achieved through partnerships with local schools, community 
centers, Boys and Girls Clubs, and HETCs.
    Mr. Chairman, I respectfully ask the committee to support 
our recommendations of increasing the funding for the area 
health care professions and nursing education programs under 
Title 7 and Title 8 of the Public Health Service Act to at 
least $440,000,000 for fiscal year 2002. This is consistent 
with funding levels that are recommended by the Health 
Professions/Nursing Education Coalition.
    Last year, no new AHECs were started. To enable AHEC 
programs to expand services to all States, additional funding 
is crucial. AHEC programs have a multitude of responsibilities, 
from recruitment of minority and disadvantaged students to 
health care careers to enhancing the quality of the current 
health care workforce through telecommunication training, 
telemedicine distance learning, and providing health care 
experience to K-16 students.
    Mr. Chairman, thank you for this opportunity to represent 
the National AHEC Organization.
    [The statement of Mr. Jenney follows:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
    Mr. Regula. Thank you. Will your activities increase the 
number of nurses? There seems to be a shortage.
    Mr. Jenney. Yes, sir. In our program in Northeastern Ohio 
alone, we sponsored clubs in area high schools that put 
students who are in nursing programs in area colleges in those 
schools and we are working with HRSA in their new Kids Into 
Health Care initiative.
    Mr. Regula. Any questions?
    Ms. DeLauro. Yesterday I had the opportunity--I was glad to 
hear you mention the whole question of the nursing shortage. 
Which I think we need to as a Congress focus on. My colleague 
Lois Capps, who is a nurse, and myself are looking at 
legislation. This is specifically in the area of recruitment. I 
know some of my colleagues on the Senate side are doing that. I 
think we are in a crisis and a danger in the dealings of 
qualified personnel. This is not an issue of throwing people at 
a problem, but making sure we have the adequate kind of 
training for people to be able to take care of folks. So, thank 
you.
    Mr. Regula. Thank you for coming.
    Mr. Jenney. Thank you.
    Mr. Regula. Our next witness will be introduced by Ms. 
DeLauro. Dr. Gary Friedlaender.
    Ms. DeLauro. Mr. Chairman and my colleagues on the 
committee, it really is a great pleasure for me to introduceto 
you one of my constituents, Dr. Gary Friedlaender. Dr. Friedlaender is 
chair of the department of orthopedics and rehabilitation at the Yale 
University School of Medicine. He is joined today by two of his 
patients, Daniel Kayne and Allison Gaffey, both of whom have really 
been very, very courageous in their fight against bone cancer. And you 
can tell by looking at them what very young ages they are, and we are 
truly admiring of your courage.
    Dr. Friedlaender is distinguished in his field, Mr. 
Chairman. He has served as chair of the National Arthritis 
Board, as a member of the orthopedic study section at the NIH, 
and he is currently serving on the Council of the National 
Institute of Arthritis and Musculoskeletal and Skin Diseases. 
He is chair of the research committee of the American Academy 
of Orthopedic Surgeons and the Academic Orthopedic Society. He 
above all is a committed and a compassionate human being in a 
profession where he has been allowed to demonstrate that 
wonderful capacity. He is an untiring advocate for support of 
critical medical research into these areas, and he makes a 
difference in people's lives. And it is my pleasure to 
introduce him to this wonderful committee. Dr. Friedlaender, 
welcome; and Allison, and to you, Daniel, welcome.
                              ----------                              

                                           Tuesday, March 13, 2001.

                AMERICAN ACADEMY OF ORTHOPAEDIC SURGEONS


                               WITNESSES

DR. GARY FRIEDLAENDER, CHAIR, DEPARTMENT OF ORTHOPAEDICS AND 
    REHABILITATION, YALE UNIVERSITY SCHOOL OF MEDICINE, ACCOMPANIED BY 
    DANIEL KAYNE AND ALLISON GAFFNEY
    Dr. Friedlaender. Thank you very much, Congresswoman 
DeLauro. Good morning, Mr. Chairman, and other distinguished 
members of the subcommittee. My name is Dr. Gary Friedlaender. 
I am chair of the Department of Orthopaedics and Rehabilitation 
at Yale, and chair of the Committee on Research of the American 
Academy of Orthopaedic Surgeons. The Academy's 24,500 members 
commend this subcommittee for its consistent and strong 
commitment to biomedical research, and also appreciate the 
opportunity to testify today. To illustrate both the progress 
as well as the remaining challenges related to the health of 
the musculoskeletal system, I am accompanied by two of my 
patients, Allison Gaffey and Daniel Kayne, who have both met 
greater challenges to their health than most, and whose medical 
outcomes today are enormously better than they would have been 
when I entered practice. This difference is a result of the 
scientific progress aided by the funding provided by Congress. 
We hope that you will remain committed to the goal of doubling 
the support for the NIH and investing in better health for all 
Americans in the future.
    Recognizing that 1 out of every 4 Americans has a 
musculoskeletal condition costing the United States over 
$250,000,000,000 annually, the Academy urges funding for the 
purpose of critical medical research focusing on these 
conditions, including arthritis, osteoporosis, back pain and 
spine problems, congenital and childhood deformities, tumors, 
traumas, sports-related injuries, as well as many injuries to 
bone and joints.
    The National Institute of Arthritis and Musculoskeletal and 
Skin Diseases leads the Federal effort on research into these 
basic problems: their causes, their treatments, their 
preventions, the disorders of bones, joints and other 
connective tissues. While funding for NIAMS has steadily 
increased over the past few years, the Academy is concerned 
that the funding has not kept pace with allocations to other 
NIH institutes. We urge you to provide $457,000,000 to NIAMS 
for the fiscal year 2002, a 15 percent increase over this 
year's funding.
    Allison and Daniel both developed osteosarcoma in their 
legs. Osteosarcoma, a malignant tumor of the bone. Just 15 
years ago, the best available option for survival would have 
been chemotherapy and amputation, often with a tragic outcome 
despite these efforts. Modern imagery and techniques allowed me 
and other health care professionals to judge the character and 
the extent of their tumors. Their treatment included a 
combination of much improved chemotherapeutic drugs and 
innovative, limb-sparing surgery funded by NIH. This surgery 
accomplishes the complete removal of tumor without amputation, 
followed by replacement to the diseased bone with either a 
custom metallic implant similar to the total joint replacements 
we use for arthritis, or, as with Allison and Daniel, with a 
bone transplant donated from another generous individual at the 
time of their passing.
    I would like to let Allison and Daniel tell of their own 
experiences in their own words.
    Ms. Gaffey. Thank you, Doctor. Chairman Regula and 
honorable Members, my name is Allison Elizabeth Gaffey. Three 
years ago I suffered from bone cancer in my left femur which 
threatened my life and still threatens the life of many others. 
Not long ago, the treatment required the removal of the 
diseased area to save a life, as it did with Ted Kennedy 
Junior. I come before you as proof of the benefit of research 
into this disease. A section of my left femur was removed and 
replaced with an 8.5-inch-long donor bone in a complicated 12-
hour operation. Coupled with experimental chemotherapy of a 13-
month period, my health has been restored.
    I urge you to reward the successes of the related research 
by appropriating more money for its continuance. My friends and 
neighbors of Old Lyme, Connecticut have contributed to a fund 
to attribute to this research, but unfortunately it seems too 
little. The Federal Government's fiscal weapons in your hands 
can eradicate the sufferings of those children still in the 
hospital. Thank you.
    Mr. Kayne. Hello, my name is Daniel Kayne. I am here before 
you today as a bone cancer surviver. Your funding was key to my 
successful struggle. I represent so many friends who conquered 
their struggles, but sadly, also a number that have died from 
this disease. It is a miracle that medical science and your 
research funding has allowed Dr. Friedlaender and his 
colleagues to cure Allison and I. The improvements in 
treatment, remission, and cure are amazing, yet more funding is 
needed so all of us can live.
    Mr. Kayne. Teenagers are constantly being diagnosed with 
bone cancer. Wouldn't it be great to see a world without the 
need for bone cancer treatment? In this new age of genetics it 
is time to learn the mystery of the origin of my disease. I 
challenge you to help unlock this dreadful secret and find 
genetic tools not only to treat, but to prevent my disease. 
Only research funding and the excellent care of experts like 
Dr. Friedlaender can bring us closer to these goals so that 
children like Allison and I can live cancer-free lives.
    Thank you for all that you have done and, hopefully, for 
what Congress will do now to help us.
    Dr. Friedlaender. Investing in the Nation's health has 
repeatedly been demonstrated to be our most important and 
productive opportunity. The American Academy of Orthopaedic 
Surgeons looks forward to working with you and serving as a 
resource on this important area. Thank you.
    [The information follows:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
    Mr. Regula. Thank you.
    Ms. DeLauro, do you have any comments or questions?
    Ms. DeLauro. I just want to thank you for your testimony 
and your work. I think it is the power of the testimony of 
yours, Doctor, but particularly of Allison's and Daniel's that 
tell the story. And what we can do, that is what the--I think 
those of who serve on this committee feel that we are blessed 
to have the opportunity to participate in some small way in the 
efforts that all of you make; and I want to say thank you to 
Allison and to Daniel. To listen to you speak brings joy to all 
of us.
    Mr. Regula. Thank you.
    Mr. Hoyer.
    Mr. Hoyer. I want to thank Allison and Daniel and Dr. 
Friedlaender for being here as well.
    And Daniel and Allison, we are going to have a debate. We 
had a debate last week and we are going to have a debate in 
weeks to come about how many resources the United States 
citizens are willing to send to Washington, or to Annapolis in 
my case, the capitals, to solve problems that are bigger.
    As you heard Ms. Modell testify, they do a lot of good 
work, but the point is, it takes a larger effort; and I hope 
that you would communicate with your colleagues, your age 
group, as to the fact that those resources make a difference.
    And while we talked about health care having an impact, it 
does, education obviously has an equal and related impact as 
well.
    But that is a very significant debate your generation is 
going to participate in, as to how much we are willing to as a 
public invest in public ways as opposed to private ways; and we 
have to make that balance. You are going to be very much 
involved in that decision, and that particularly will be a 
challenge to you, because there are going to be more and more 
of us who are old, whom you will be supporting in the next 
decades, than there were when I was your age, where there 
weren't as many retired and older people for whom I was going 
to work to pay Social Security and have them supported by.
    So you are right, this investment, Daniel, you said saves 
lives, and we have to make sure that your friends understand 
that as they enter the workplace and pay taxes, that those 
taxes are utilized and have a direct effect on them as well as 
on you.
    Thank you, Mr. Chairman.
    Mr. Regula. I want to thank both of you. Do you suffer any 
handicaps participating in your school, in sports and so on?
    Mr. Kayne. I can't do any contact sports and I can't run 
anymore, but otherwise I participate in everything.
    Mr. Regula. You are very active. I assume you are both high 
school students?
    Mr. Kayne. Yes.
    Ms. Gaffey. Yes.
    Mr. Regula. Thank you for coming; and Dr. Friedlaender, 
thank you for bringing them. It is nice to see success stories.
                                           Tuesday, March 13, 2001.

                      IMMUNE DEFICIENCY FOUNDATION


                                WITNESS

RICHARD BARR, M.D., CHAIRMAN OF THE BOARD OF TRUSTEES
    Mr. Regula. Okay, our next witness today is Dr. Richard 
Barr, Chairman of the Board of Trustees, Immune Deficiency 
Foundation.
    Dr. Barr, welcome.
    Dr. Barr. Chairman Regula and members of the committee, 
thank you for the opportunity to testify today on behalf of 
primary immunodeficiency diseases. Thanks to the excellent 
testimony of Mrs. Modell, I know that you all can appreciate 
the gravity of the problem regarding the primary 
immunodeficient patient. Primary immune deficiency diseases are 
a group of inherited disorders in which part of the body's 
immune system is missing or functioning imperfectly. They 
affect Americans of all races and ages. They are usually 
difficult to diagnose and challenging to treat. Most patients 
require frequent, if not constant, antibiotic usage and 
lifelong infusions of intravenous immune globulin, a pooled 
plasma derivative given at monthly intervals, IGIV. All of you 
probably remember the story of David, the boy in the bubble. He 
was born without a functioning immune system. He spent his 
short life in a protective bubble because there was essentially 
no effective treatment. We hope with continued research that 
not only will we improve treatment, but we will also cure 
future Davids.
    The Immune Deficiency Foundation, IDF, is the national 
nonprofit charitable organization dedicated to improving the 
health of primary immune deficient patients. IDF provides a 
wide variety of patient and family services, medical research 
and education, and advocacy issues related to these diseases. 
Mr. Chairman, I am here today to speak as a patient, a 
physician and the newly elected Chairman of the Board of 
Trustees of IDF.
    My case is typically representative of the typical adult 
immune deficient patient. I was diagnosed with what is called 
common variable immune deficiency, an inability of the body to 
produce protective antibodies, about 10 years ago. This 
followed years of repeated infections which were unresponsive 
to antibiotics, undiagnosed by numerous physicians, and 
unimproved by several surgeries, a story that is typical for 
most immune deficient patients. Following appropriate diagnosis 
and treatment with IGIV, I improved dramatically to the point 
of resuming most daily activities. In my testimony today, I 
would like to highlight three areas of importance to IDF and to 
our community: One, the national primary immune deficiency 
surveillance program, two, the primary immune deficiency 
research at NIH, and three, primary immune deficiency 
registries at the National Institute of Allergy and Infectious 
Diseases.
    Mr. Chairman, because primary immune deficient patientsare 
the only patient population that requires lifelong infusions of IGIV to 
maintain health, the Immune Deficiency Foundation has been working to 
establish a national surveillance study of this group to investigate 
the short- and long-term effects of IGIV usage. The establishment of 
this surveillance initiative is vitally important not only to our 
patients, but to all the patients that receive IGIV for therapy.
    Mr. Chairman, we ask that you continue to support this 
public health initiative by encouraging CDC to work with us 
again in fiscal year 2002. Moreover, we ask that you encourage 
the NIH to support this as well. Mr. Chairman, we thank the 
subcommittee for its long-standing support of biomedical 
research at the National Institutes of Health. IDF remains 
committed to the goal of doubling the NIH budget by fiscal year 
2003.
    In recent years, NIAID-sponsored research has shed new 
light on the genetics of primary immune deficiencies. NIAID 
investigators are using this information to develop new gene-
based therapies for primary immune deficiencies. This past year 
the first successful gene therapy has been performed on 
children born with severe combined immunodeficiency, 
essentially those with no immune system. Primary immune 
deficiency research also benefits patients with other diseases, 
notably auto immune diseases and cancer, since the trigger for 
many of these diseases is an underlying defect in the immune 
system. Recognizing the promise that biomedical research holds 
for improving the quality of life for primary immune deficient 
patients, IDF joins with the Ad Hoc Group for Medical Research 
Funding in recommending a 16.5 percent increase for NIAID, 
NICHD and NCI in fiscal year 2002.
    Mr. Chairman, since 1997 IDF has contracted with NIAID to 
construct and maintain registries of eight primary 
immunodeficiency diseases. The goal of the registries is to 
assemble a comprehensive clinical picture of each disorder. 
This data is an invaluable resource for physicians conducting 
basic research. Currently, for example, four institutions in 
six separate research projects are using information from one 
registry, chronic granulamatous disease, to learn more about 
this disease and how to treat it, and hopefully how to cure it. 
Mr. Chairman, we ask the committee for its continued support 
for the maintenance of these very important registries. I would 
like to thank you once again for the opportunity to present our 
views. We look forward to working with you and your staff.
    I would be happy to answer any questions.
    Mr. Regula. Thank you.
    Mr. Hoyer.
    Mr. Hoyer. No questions.
    Mr. Regula. Thank you very much.
    [The information follows:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
                                           Tuesday, March 13, 2001.

                   AMERICAN FOUNDATION FOR THE BLIND


                               WITNESSES

PAUL SCHROEDER, VICE PRESIDENT, GOVERNMENTAL RELATIONS ACCOMPANIED BY 
    KIMBERLY CHAFFIN, REHABILITATION TEACHER, OHIO REHABILITATION 
    SERVICES COMMISSION, AND MARY CARUSO, MT. VERNON, OH
    Mr. Regula. Our next witness is Kimberly Chaffin, a 
rehabilitation teacher, Ohio Rehabilitation Services 
Commission, and accompanied by Mary Caruso.
    Go ahead.
    Mr. Schroeder. Mr. Chairman, if I may, my name is Paul 
Schroeder. I am with the American Foundation for the Blind, and 
I am pleased to be joined here by Ohioans Kim Chaffin and Ms. 
Mary Caruso. Thank you for the opportunity to provide testimony 
on the independent living services for older individuals who 
are blind. It is part of the Department of Education 
Rehabilitation Services program. I also want to take this 
opportunity very quickly to thank the subcommittee for its 
support in this year's budget for AFB's National Literacy 
Center and the instruction in braille and technology that we 
are able to provide through this center.
    Mr. Chairman, the Independent Living Services for Older 
Blind has got to be one of the most singularly cost-effective 
Federal programs. For an investment averaging between $500 and 
$700 per individual it allows those who lose their sight as a 
part of aging to remain independent and in their homes. It is 
the only program that provides these services. Medicare doesn't 
cover them, private insurance doesn't cover them. As you will 
see, Ohio is fortunate to have a truly excellent program.
    I will turn it over to Kim.
    Ms. Chaffin. I am a rehabilitation teacher; that means, I 
am the frontline McDonald's worker. I have spent 17 years 
covering the lower 14 counties of Ohio, and I would like to 
share some case examples on some of the success we have had 
with this program.
    This is James. James is 93. He is using a high-task 
magnifier to read his mail. He is legally blind. We went into 
his home, we marked his stove and trained him, using these 
magnifiers. While we were out there, we discovered he had this 
really great light rigged up in his shower. This is how this 
gentleman tried to shave. The problem is the cord was running 
down into the water. It is very crucial with this program that 
we provide home visits. This is Madeline. As you can see, 
Madeline is standing in front of her house. That's not where I 
met her. I met her in a nursing home where she had been placed 
after losing her vision overnight. She had no living relatives 
to assist her. For $1,186 worth of training and rehabilitation, 
we moved this woman back into her home where she still lives 
today. This is Jane. Jane lives in a very rural community in 
Ohio. She has no plumbing and no running water. She is mentally 
retarded and her closest support system has died. They 
contacted me from Columbus, 2 hours away, to see if we could 
provide some services because Jane was losing her vision. We 
went in, we trained her to use magnifiers. We increased the 
safety of her stove, increased some lighting in her home, and 
for $400 or $500 we severely increased the safety in her home. 
You will notice the young man in the picture. This is a student 
from Mount Union College. I will use college students in the 
summertime to assist me, because I can see twice as many people 
in one day. She is 86 miles from my office.
    In conclusion, I would like to say that again Medicare does 
not pay for services. One particularly important ingredient is 
that it does not pay any longer for home health nurses to come 
in and fill insulin syringes. That is a training component we 
provide for diabetics.
    I would like to introduce you to one of our consumers, Mary 
Caruso, who would like to share with you some of the success of 
the program.
    Ms. Caruso. Mr. Chairman and committee members, I have 
macular degeneration. I got up one Sunday morning. I read the 
morning newspaper. The next Sunday I could not read it again. I 
went to two doctors in the State where I lived, and they told 
me they could not help me and there was no reason for me to go 
back to them again. I decided to move to the State of Ohio to 
be closer to my daughter. I got in touch with a retina 
specialist whobelonged to the retina group in Columbus. He 
operated on my right eye and improved my vision. He got in touch with 
the--with the Ohio Rehabilitation Committee, and they came to my home 
and they showed me many ways that made my life safer.
    They provided me with many things that made my life easier, 
especially with a freedom machine which allowed me to read a 
newspaper again. It also allowed me to read my mail and answer 
my mail--also to take care of my own finances. I can read a 
prescription on it. I can also read recipes. I am here today to 
personally thank them for what they have done for me. I thank 
the Ohio Rehabilitation Commission and also the American 
Foundation for the Blind for giving me back my independence.
    Mr. Regula. I thank all of you.
    A couple of questions: Do you have an age?
    Mr. McCarthy. Yes, I am 81.
    Mr. Regula. No, no; I am sorry.
    Ms. Chaffin. That is okay.
    Mr. Regula. What age--do you have a cutoff? In other words, 
would young people----
    Ms. Chaffin. Fifty-five is the starting age for this elder 
blind program.
    Mr. Regula. For the services?
    Ms. Chaffin. I have served 99-, 100-year-olds. You will see 
in a photo album--a lot of you have these in your office--we 
have a lot of 95-year-olds now because of the aging population, 
people living longer. So we don't have any upper-end age limit. 
I have gone up to 102.
    Mr. Regula. Fifty-five is the cutoff.
    What percent of the people in the United States do you 
think have access to services like these?
    Ms. Chaffin. The problem is that there may be low-vision 
clinics within an hour or two of their home, but Medicare does 
not pay for any of the training component.
    Mr. Regula. No, I understand.
    Ms. Chaffin. I would say that the program is federally--it 
is a Federal program, so all these States have some type of 
Federal program.
    But I think that Paul Schroeder would be able to answer 
that question a lot better. I am the frontline employee, so I 
think I would like to divert that question to him.
    Mr. Schroeder. Mr. Chairman, there are approximately 
6,500,000 people who are in the age range and have lost enough 
vision to be eligible for program. The program, I think, serves 
less than 1 percent of the population.
    Mr. Regula. So there is a lot of need out there?
    Ms. Chaffin. I have had a 71 percent increase in referrals 
in the last 2 years.
    Mr. Regula. Well, thank you much. It sounds like a great 
program.
    Mr. Schroeder. Thank you, Mr. Chairman.
    [The information follows:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
                                           Tuesday, March 13, 2001.

                  SOCIETY FOR MATERNAL-FETAL MEDICINE


                                WITNESS

JAMES FERGUSON, M.D., MEMBER, BOARD OF DIRECTORS AND GOVERNMENT 
    RELATIONS GROUP
    Mr. Regula. Next is Dr. James Ferguson, Member, Board of 
Directors and Government Relations Committee, Society for 
Maternal-Fetal Medicine.
    Dr. Ferguson.
    Dr. Ferguson. Chairman Regula, members of the subcommittee, 
my names is James Ferguson. I am a physician and professor at 
the University of Virginia where I teach care for women with 
complicated pregnancies and perform research. I am here today 
representing the 2,000 members of the Society for Maternal-
Fetal Medicine, also known as the SMFM. Thank you for providing 
us with this opportunity to outline our top funding priorities 
for fiscal year 2002 and to be a part of your shakedown cruise. 
Before moving on, I know many of you here today are wondering 
what a maternal-fetal medicine specialist does. You are not 
alone. Part of my job today is to help educate citizens about 
our unique role in today's health care system.
    A maternal-fetal medicine specialist is an obstetrician-
gynecologist who has completed 2 or 3 years of additional 
formal education and clinical experience after residency in 
obstetrics and gynecology. Through this training, a maternal-
fetal medicine specialist provides care and consultation in a 
complicated or high-risk pregnancy. Our members' expertise in 
genetics, obstetrical surgery and complex pregnancy-related 
medical conditions helps countless women and their newborns 
across the country. What types of patients do maternal-fetal 
medicine specialists see? We see women with potentially life-
threatening disorders such as heart disease, high blood 
pressure, kidney or gastrointestinal diseases. These women may 
be pregnant or may be contemplating pregnancy in light of their 
unique medical situation. We also see patients undergoing 
various complex diagnostic or therapeutic procedures. Finally, 
we see healthy women whose pregnancy is considered high risk, 
including those carrying twins, triplets or more, or women with 
a recurrent preterm labor and delivery problems. Thus, we are 
strong advocates to ensure optimal outcomes for pregnant women, 
their unborn children and babies.
    For fiscal year 2002 funding priorities, the Society for 
Maternal-fetal Medicine is seeking a 16.5 percent, or 
$3,400,000,000, increase over last year's budget for the 
National Institutes of Health and, in particular, an increase 
for the National Institute of Child Health and Human 
Development that takes into account the bipartisan goal set by 
Congress to double the NIH budget by 2003. In addition, the 
SMFN is requesting $5,000,000,000 for the Centers for Disease 
Control and Prevention. As we look at pregnancy-related 
complications in the United States today, we see some very 
troubling statistics. For example, over 3,000 women experience 
serious complications due to pregnancy each day. The risk of 
pregnancy-related death is four times greater among African-
American women when compared to white women, and the risk of 
dying is almost twice as high among Hispanic women compared to 
white women.
    While we should never place a price tag on human suffering, 
we do know through statistics provided by the Agency for Health 
Care Research and Quality that prematurity and low birth weight 
together rank as the third most costly condition in terms of 
inpatient hospital charges, equaling $50,000 as the mean charge 
and a mean length of hospital stay of nearly 22 days. Over the 
years we have learned that early prenatal care is vital. 
Outreach efforts funded by this subcommittee are ongoing to 
educate expectant mothers and those considering motherhood 
regarding the need for early medical attention; but many, many 
areas related to complicated pregnancies remain unchartered, 
and these conditions require more intense attention and 
research.
    On behalf of the Society, I would like to present a few 
specific research recommendations endorsed by the Society for 
Maternal-Fetal Medicine. These recommendations stem from our 
research task force, which recently released this 
publicationentitled Research Priorities in Maternal and Fetal Medicine. 
Here are a few priority projects we would like to focus----
    Mr. Regula. Excuse me. You anticipate that being done by 
either NIH or CDC, what you are asking for?
    Mr. Ferguson. Yes.
    One, targeted funding is needed so we can reveal the causes 
of ethnic and racial differences in pregnancy outcome. In the 
United States, African-American women, especially those who are 
poor, have considerably more preterm births when compared with 
white women. Preterm births or births that occur before 37 
weeks result in disproportionately high fetal and infant 
mortality. As I mentioned earlier, the risk of pregnancy-
related death is four times greater among African-American when 
compared to white women. Unfortunately, these huge racial 
discrepancies remain unexplained. Research must be done to 
reverse and eventually erase this terrible trend.
    Two, targeted research is needed to learn more about 
problems associated with multiple births.
    Three, we need to learn more about specific mechanisms of 
labor, both term and preterm.
    And four, we need to take advantage of the new knowledge 
from the Human Genome Project for potential treatment of 
genetic conditions prior to birth.
    As you consider specific funding levels, the SMFM would 
like to acknowledge the tremendous work done by this 
subcommittee for its steadfast commitment in doubling the NIH 
budget by 2003. There is no doubt that the recent breakthroughs 
in science have been made due to the subcommittee's leadership. 
We would also like to commend the National Institute of Child 
Health and Human Development and its director, Dr. Dwayne 
Alexander.
    Thank you very much on behalf of the Society for Maternal-
Fetal Medicine to present this testimony.
    Mr. Regula. Your request would be to increase funding for 
the agency?
    Dr. Ferguson. Yes, sir, and then specifically target on 
some of these very important maternal and fetal pregnancy 
complications.
    Mr. Regula. Very well. Well, thank you very much for 
coming.
    [The information follows:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
                                           Tuesday, March 13, 2001.

                ASSOCIATION OF SCHOOLS OF PUBLIC HEALTH


                                WITNESS

RONALD ST. PIERRE, Ph.D., INTERIM DEAN, SCHOOL OF PUBLIC HEALTH, OHIO 
    STATE UNIVERSITY
    Mr. Regula. Our next witness is Dr. Ronald St. Pierre, the 
Interim Dean of School of Public Health of Ohio State 
University.
    We are pleased to welcome you.
    Mr. St. Pierre. Thank you. Thank you, Mr. Chairman.
    Mr. Chairman, I am Ronald St. Pierre, the Interim Dean of 
the School of Public Health at the Ohio State University. I am 
here today representing the Association of Schools of Public 
Health. The subcommittee has a copy of my written statement; I 
would simply like to highlight some of the key elements of the 
association's fiscal year 2002 appropriations request for 
public health service programs.
    The Association of Schools of Public Health is the only 
organization representing the deans, the faculty and the 
students of the Nation's 29 accredited schools of public health 
and graduate programs who are seeking accreditation in both the 
United States and Puerto Rico. These schools have a combined 
faculty of over 2,500, educating more than 15,000 students 
annually from every State as well as most countries of the 
world. These schools graduate approximately 5,000 graduates 
each year. Schools of public health constitute the primary 
source of comprehensively trained public health professionals 
and specialists which are in such short supply to serve the 
Federal Government, the 50 States and the private sector. Our 
training programs in the schools of public health are focused 
on the prevention of disease and disabilities. Our programs are 
based in fundamental public health sciences and our curricula 
have a population-based perspective.
    Mr. Chairman, we are spending billions of dollars annually 
on the treatment of chronic diseases and/or research to find 
cures for these diseases, a laudable effort, while at the same 
time using mere pennies of our health care dollars to find ways 
to prevent them. For example, the U.S. Government spends 
approximately $50,000 per year per capita to train a medical 
graduate. By contrast, the Federal share per year to train a 
graduate public health student in the United States is less 
than $10. Mr. Chairman, let me briefly outline the 
association's recommendations in four critical areas that will 
address the primary concern of the academic public health 
community.
    The first is prevention research centers. The association 
requests $40,000,000 in fiscal year 2002 funds to strengthen 
and expand the CDC Prevention Research Centers' program. These 
funds restore the original congressional intent to fund each 
center, of which there are now approximately 24, at $1,000,000 
and support new and competitively selected centers in regions 
not currently served by Prevention Research Centers, one of 
which is Ohio.
    The second is Public Health Workforce Development. The 
association requests $20,000,000 in fiscal year 2002 to 
strengthen and expand public health workforce development 
through health professions education and training programs at 
schools of public health. These programs will help correct a 
critical shortage of public health professionals in the 
country, a growing problem. Experts maintain that as many as 80 
percent of persons working in State and local organizations 
have no formal education in public health.
    Our third area is the Centers for Public Health 
Preparedness. The association requests $10,000,000 in fiscal 
year 2002 to both strengthen and expand the CDC's Centers for 
Public Health Preparedness. This program supports the training, 
in schools of public health, of the Federal, State and local 
public health personnel in skills and competencies needed to 
respond to public health emergencies, such as bioterrorism and 
emerging infections.
    Fourth, the Prevention Research Initiative. We request 
$25,000,000 in fiscal year 2002 funds for CDC extramural 
prevention research initiative. This program supports applied 
research that translates scientific knowledge into projects 
that promote health and prevent disease, disabilities and 
injuries at the community level.
    In closing, Mr. Chairman, I wish to speak on behalf of the 
deans of the nation's schools of public health in generaland 
the academic public health community at the Ohio State University in 
particular to urge you, through your chairmanship, to lead the House in 
important matters that impact the health of the American public.
    Mr. Chairman, I thank you for the opportunity of presenting 
this testimony today and would be pleased to answer any 
questions from you.
    Mr. Regula. Thank you.
    Is there a degree in public health provided by institutions 
such as yours?
    Mr. St. Pierre. A Master of Public Health degree.
    Mr. Regula. It has a professional status all on its own?
    Mr. St. Pierre. Yes.
    Mr. Regula. It is made up of some medical knowledge and 
preventive concepts and so on?
    Mr. St. Pierre. The fundamental curriculum is based around 
the public health basic sciences, as it were--epidemiology, 
biostatistics, environmental health sciences and health 
behavior, health promotion.
    Mr. Regula. You would work closely with CDC?
    Mr. St. Pierre. Absolutely.
    Mr. Regula. You are sort of their outreach?
    Mr. St. Pierre. We are part of their educational arm, 
that's exactly right.
    Mr. Regula. Thank you very much for coming.
    [The information follows:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
                                           Tuesday, March 13, 2001.

 AMERICAN ACADEMY OF OTOLARYNGOLOGY--HEAD AND NECK SURGERY FOUNDATION, 
                                  INC.


                                WITNESS

G. RICHARD HOLT, M.D., M.P.H., EXECUTIVE VICE PRESIDENT
    Mr. Regula. Next is Dr. Richard Holt, the Executive Vice 
President of the American Academy of--I will let you tell me 
what that one is.
    Dr. Holt. Thank you, Chairman Regula, ladies and gentlemen. 
I appreciate the opportunity to speak on behalf of the American 
Academy of Otolarynology-Head and Neck Surgery----
    Mr. Regula. Okay. Thank you.
    Dr. Holt [continuing]. Which represents the medical and 
surgical specialists who deal with disorders of the ears, nose, 
throat and other related areas. These disorders actually 
include such things as deafness, dizziness, ear infections, 
nasal/sinus infections, voice disorders.
    Mr. Regula. These would be specialists that would be 
available in communities to treat these types of disorders?
    Dr. Holt. Yes, sir, 11,000 physicians.
    I would also like to thank, for the record, Mr. Hoyer who 
has been a great supporter of our activities and has been 
helping us a great deal, particularly with hearing loss and 
other disorders.
    With your permission, sir, I have submitted a full 
testimony and I would like to keep it short and to the point 
today.
    Mr. Regula. We appreciate that.
    Dr. Holt. The main thing we would like to ask for is the 
committee's consideration for directing the NIH, specifically 
the National Institutes on Deafness and Other Communication 
Disorders, to increase funding for extramural training of 
physician-scientists. As you are very well aware, the basic 
science research that is going on in America is outstanding, 
leads the world. What is important at this point, is to be able 
for the physicians, those physicians who lay hands upon the 
patient and deliver the treatment, to be able to be trained to 
be translational producers of therapy for patients from the 
laboratory to the bedside.
    Unfortunately, the funding for training of the physician-
scientists has decreased. We would like to ask the committee to 
consider directing the NIH, particularly the NIDCD, to increase 
funding for training of the physician-scientists.
    Mr. Regula. These direct grants to educational 
institutions?
    Dr. Holt. Yes, sir, that is correct.
    Mr. Regula. Capabilities?
    Dr. Holt. That's correct, primarily to the health care 
centers although there are more practitioners in communities 
who are interested in being trained in quality-of-life outcome 
studies and so forth. We feel that these individuals who care 
for patients have a great opportunity the take that ``bench 
research'' and deliver it right to the patient if they can be 
trained.
    Thank you very much.
    Mr. Regula. So they would be specialists after they get 
this additional training?
    Dr. Holt. Yes, sir, they could be specialists already, and 
this would enable them in their own practices to be able to 
help translate that research directly to the patient.
    Mr. Regula. Very interesting. Well, thank you very much.
    Dr. Holt. Thank you.
    [The information follows:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
                                           Tuesday, March 13, 2001.

                       CYSTIC FIBROSIS FOUNDATION


                                WITNESS

JOAN F. BROOKS, VOLUNTEER
    Mr. Regula. Our next witness today is Joan Brooks, a 
volunteer at the Cystic Fibrosis Foundation. We are trying to 
be sensitive to people's schedules this morning, and we are 
happy to have you.
    Ms. Brooks. Good afternoon. My name is Joan Finnegan 
Brooks. I would like to thank the subcommittee for this 
opportunity to testify on behalf of the Cystic Fibrosis 
Foundation. I am here to advocate for increased funding for the 
National Institutes of Health and for the NIH to help fund a 
clinical trials network to test new cystic fibrosis therapies. 
I was born in 1960 and was diagnosed with cystic fibrosis when 
I was 1 month old. When I was adopted into my wonderful family, 
my parents had already suffered the heartache of losing a 
little girl, Peggy, to cystic fibrosis when she was just 2-\1/
2\. My older brother, John, also died from cystic fibrosis in 
1969 when he was 15.
    At the time of my birth, the predicted life expectancy for 
individuals with CF was less than 10 years of age. I have 
survived beyond the CF mortality statistics at age 40. The 
median life expectancy for individuals with CF is now more than 
30 years, although that still means that half the people with 
CF die before their early 30s.
    Cystic fibrosis is a genetic disease affecting 
approximately 30,000 children and adults in the U.S. CF causes 
the body to produce an abnormally thick and sticky mucous that 
clogs the lungs, making lung infections frequent and life-
threatening. It also impairs digestion. The treatment of CF 
includes frequent hospitalizations, chest physical therapy, 
powerful intravenous antibiotics and inhaled aerosols, 
digestive enzymes and vitamins, and insulin for those of us 
like me----
    Mr. Regula. Why have you survived? What is special?
    Ms. Brooks. A lot of hard work. I think part of my tactic 
for survival, if you will, is, I exercise greatly, which has 
definitely improved my lung function; and I have to also say, 
frankly, it probably is in my genes that I have a mutation of 
the CF gene that has allowed me to survive.
    Mr. Regula. So you don't have it anymore?
    Ms. Brooks. I do have it.
    Mr. Regula. You have it, but not as severe as your brother, 
for example?
    Ms. Brooks. It is a challenge I live with. I am 
hospitalized frequently; I am always fighting infections. If 
you were to get a cold, you wouldn't be bothered. I would have 
a very life-threatening situation.
    Mr. Regula. Well, you look well, if I may say.
    Ms. Brooks. Thank you very much. And I am pleased to be 
here to be a spokesperson for those of us who suffer with 
cystic fibrosis.
    Most people remember what they were doing when President 
Kennedy was assassinated or when man first landed on the moon. 
I remember what I was doing when the announcement was made in 
1989 that scientists, supported by the Cystic Fibrosis 
Foundation, discovered the defective gene that causes CF. Since 
then scientists have applied knowledge about this gene into 
treatments for CF patients. Gene therapy with responsible 
Federal oversight offers great promise because it tackles the 
cause of the disease, not just its symptoms. The Cystic 
Fibrosis Foundation pursues many different strategies to 
develop improved treatments for CF patients. The foundation's 
therapeutic development program is an important initiative that 
supports the full spectrum of CF drug development. More than 15 
new drugs are currently moving through the therapeutics 
development network. Contrast that number 15 to zero new drugs 
when I was growing up. Although the CF Foundation is a leader 
in CF research, we believe that the NIH has an immediate 
opportunity to accelerate this research for new CF therapies. 
The CF Foundation and individuals with CF wholeheartedly 
endorse the effort to double the NIH budget over a 5-year 
period, a goal we would like to see by 2003.
    The CF Foundation joins the Ad Hoc Group for Medical 
Research Funding in advocating for an increase of 16.5 percent 
for the NIH for fiscal year 2002. Let us always be mindful that 
money buys science and science buys life. The CF Foundation 
supports research initiatives primarily through private-sector 
funding sources along with some limited financing from the NIH. 
In 1999, the CF Foundation garnered historic support when the 
Bill and Melinda Gates Foundation gave $20,000,000 for a drug 
discovery program to identify potential new treatments for CF. 
There must be a strong public/private-sector partnership if we 
are to achieve advances in CF treatment as quickly as possible.
    The CF Foundation strongly recommends that the NIH fund the 
development of a clinical trials system to test cystic fibrosis 
therapies more generously. The NIH has already established 
clinical trial models for other diseases, and the success of 
these model systems is quite impressive. A clinical trial 
system would be useful not only for the determination of new CF 
therapies, but would also serve as a model for the development 
of new treatments for other rare diseases. Dr. Frances Collins, 
one of the co-discoverers of the CF gene and head of the 
National Human Genome Research Institute, has indicated that 
the efforts of CF researchers, quote, ``stand as the paradigm 
for the study of all genetic diseases and have resulted in 
great optimism,'' end of quote.
    In 1998, my husband Peter and I ran the 26.2-mile Marine 
Corps Marathon. I wore a customized T-shirt that read, ``I am 
surviving cystic fibrosis and diabetes and I am in the running 
for the cure.'' It takes a lot of hard work and dedication to 
complete a marathon. Finding a control and a cure for CF is a 
lot like a marathon, but the stakes are much higher. Reaching 
the finishing line means the difference between saving lives 
and losing lives.
    I am committed to doing whatever is necessary to maintain 
my lung function. I want you to join me in this commitment to 
be part of Team CF by supporting our request that the NIH 
commit new resources to a clinical trials network for testing 
CF treatment. The ultimate goal here is to develop new 
therapies for CF that increase life expectancy beyond the early 
30s and improve the quality of life for me and all others with 
cystic fibrosis.
    Mr. Regula. Thank you for your dedication.
    [The information follows:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
                                           Tuesday, March 13, 2001.

                          COLUMBIA UNIVERSITY


                                WITNESS

GERALD D. FISCHBACH, M.D., Ph.D., VICE PRESIDENT FOR HEALTH AND 
    BIOMEDICAL SCIENCES
    Mr. Regula. Our next witness is Dr. Gerald Fischbach, Vice 
President for Health and Biomedical Sciences, Columbia 
University, formerly Director of the National Institute of 
Neurological Disorders and Stroke.
    Welcome, Dr. Fischbach.
    Dr. Fischbach. Thank you, Chairman Regula. I am Jerry 
Fischbach, and I have been a very recent past Director of the 
National Institute of Neurological Disorders and Stroke, moving 
last month to New York to be Vice President of Health Sciences 
and Biomedical Sciences at Columbia. I am also a neuroscientist 
and a physician, and it is from all those perspectives that I 
want to testify this morning. I want to thank you for taking 
this remarkably difficult, but remarkably important position 
and, again, to join others in thanking the committee. They have 
been steadfast friends of biomedical science, in good times and 
in bad, and it has been a really extraordinary record.
    I want to discuss and urge continued increased support for 
biomedical research, funding for trainees, especially 
physician-scientists in biomedical research; and in my new 
role, I want to advocate for supporting the training structure 
and construction of academic health centers around the country. 
This committee has been extraordinary, and it is worth taking a 
second to realize the situation of funding in biomedical 
research just 5 years ago. I think across the NIH the 
probability of success after submitting a grant was probably on 
the order of 20 percent, that is, one out of five approved 
grants were funded. People who had been in the game for a 
while, more experienced investigators, had a higher percentage 
than that, and that meant that young investigators, people just 
out of their training, probably had less than a one in ten 
chance of having their research funded, and it was tremendously 
dispiriting.
    There were annual cuts on the order of 10 percent for those 
grants that were funded. That meant, given the fixed cost of 
some grants, that the supply--critical supply budgets in many 
grants were cut by as much as 50 percent. And all that has been 
reversed over the past 5 years. I think many institutes are up 
to 30 to 35 percent success rates. Testimony last year 
suggested that 40 percent would be used wisely, subjected to 
intense peer review and scrutiny, but we are getting there. The 
cuts for each budget have been reduced, and I think new funds 
for equipment have appeared.
    Mostly, this reversal of fortune has given us a chance to 
plan strategically, and I can speak very clearly for the 
Neurology Institute. It has been a wonderful experience that 
has involved staff extramural scientists and patient advocates; 
many of the people whom you have heard from todayin this room 
became collaborators in the planning process and friends of the 
enterprise.
    The NIH has been able to plan across broad themes such as 
neurodegeneration, which encompasses things ranging from 
Alzheimer's disease to epilepsy to drug abuse to emotional 
disorders, which are now known to be associated with 
degeneration of nerve cells, to specific disease entities in 
Parkinson's disease, brain tumors and stroke. They have led to 
many new efforts, RFAs and RFPs, and it has improved the 
science in this country. Beyond the science, it has influenced 
the biotechnology industry in wonderful ways, which has sped 
the translation of many new research results to useful 
therapeutics. But most importantly, this increased funding has 
had an enormous impact on the health of this country.
    Now, it is a truism to say that the laboratory is closer to 
the clinic these days than it ever has been before, but you 
will hear many examples where this has not been true. Results 
over the past 2 to 3 years--we have efforts to produce a 
vaccine to treat Alzheimer's disease because of the discovery 
of a gene that might be at fault. We have new methods for 
treating stroke, from preventing stroke to treating it once it 
occurs. And I would urge that we keep up this momentum; there 
is increasing need.
    The costs for each grant are increasing at a remarkable 
rate. There are ongoing commitments that have to be met and the 
patterns of research are changing from individual investigators 
to larger consortia. We have heard about the need today for 
more clinical trials and for more expensive equipment and for 
epidemiological studies of a new type, epidemiological studies 
that will make use of the genome data and that will make use of 
the new imaging resources to more reliably predict the 
precursors of disorders the allow much earlier intervention.
    The second thing I want to advocate for is for training. I 
want to emphasize, the plight of physician-scientists in this 
country. It really does take 19 years to train a physician-
scientist, and they emerge at the age of 38 to 40, earning 
surprisingly little.
    Finally, I would advocate for supporting the academic 
health centers which are the germinal zones for all of the 
science and all of the training which is so essential to keep 
this enterprise going. There are also the germinal centers that 
address health disparities in this country long after community 
hospitals have run out of resources.
    So I want to thank you again for the chance to testify and 
advocate strongly for the research, the training and the 
infrastructure that keeps supporting American biomedical 
science.
    Mr. Regula. Well, thank you very much.
    [The information follows:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
                                           Tuesday, March 13, 2001.

           AMERICAN SOCIETY OF TROPICAL MEDICINE AND HYGIENE


                                WITNESS

CHRISTOPHER V. PLOWE, M.D., M.P.H., ASSOCIATE PROFESSOR OF MEDICINE, 
    MICROBIOLOGY AND IMMUNOLOGY, AND EPIDEMIOLOGY AND PREVENTIVE 
    MEDICINE, UNIVERSITY OF MARYLAND SCHOOL OF MEDICINE
    Mr. Regula. Our next witness is Dr. Christopher Plowe, 
Associate Professor of Medicine, Microbiology and Immunology 
and Epidemiology and Preventive Medicine, University of 
Maryland. You have a pretty active list of things.
    Dr. Plowe. I will try to keep my testimony shorter than the 
title, how's that? Mr. Chairman, thank you for the opportunity 
to testify today. My name is Chris Plowe. I run a malaria 
research program that's based at the Center for Vaccine 
Development at the University of Maryland, up the road in 
Baltimore, but I spend about a third of my time overseas, 
primarily in Africa. I am here today on behalf of the American 
Society of Tropical Medicine and Hygiene, which is a 
professional society of about 3,500 researchers and 
practitioners working on infectious and tropical diseases.
    Mr. Regula. I'm curious, do you work with the Smithsonian? 
I know they do research in Panama.
    Dr. Plowe. No. We are really focused on human diseases and 
clinical research, so NIH is our prime----
    Mr. Regula. The University of Maryland has a medical 
school?
    Dr. Plowe. That's correct. That's right. I am at the 
medical school up in Baltimore.
    So on behalf of the society, I would like to thank you and 
the subcommittee for your leadership in supporting biomedical 
research. We applaud the President's proposal to provide a 
$2,800,000,000 increase for the NIH in fiscal year 2002, but we 
do join the Ad Hoc Group for Biomedical Research Funding in 
endorsing a budget increase to $3,400,000,000 to keep us on the 
path toward doubling the NIH budget by 2003.
    Just a couple of points to illustrate why this is 
important:
    A few decades ago many experts thought that we had won the 
war against infectious diseases, and I was a medical student in 
New York City when we got the dramatic wake-up call 20 years 
ago that they were wrong. In my first weeks in the hospital, I 
saw healthy young people waste away and die from disease that 
didn't have a name yet. AIDS is now one of the biggest global 
killers, and it is still a major health problem here in the 
U.S.
    In Malawi, in Central Africa where I do malaria research, 
more than a quarter of the population is infected with HIV. As 
you enter the hospital grounds, the sign for the hospital is 
dwarfed by a billboard for the coffin maker next door to the 
hospital. It is really difficult to convey the devastation that 
this disease is causing around the world, and it is only going 
to get worse, not just in poor tropical countries like Malawi, 
but in countries with great strategic importance to the U.S., 
including India, Brazil, China and Russia. Our borders remain 
porous to other infectious and tropical diseases, including 
most recently the West Nile virus, which was found right here 
in Washington, D.C., not long ago.
    Other diseases that are still----
    Mr. Regula. That is transmitted by mosquitoes?
    Dr. Plowe. Correct.
    Mr. Regula. I heard quite a discourse on West Nile recently 
on National Public Radio.
    Dr. Plowe. That is correct.
    Other diseases, like malaria, that are largely confined to 
the tropics do still pose a threat to American travelers and 
especially to our military. In all military operations in 
tropical areas in the last century, including the Pacific 
theater in World War II, Vietnam and Somalia, more casualties 
were caused by malaria than by combat injuries, and with global 
warming, the range of malaria and other vector-borne diseases 
is expanding.
    The NIAID is leading the way in developing vaccines and 
treatments for AIDS, malaria and other infectious and tropical 
diseases. I work on an NIAID-sponsored project which is 
developing a site for testing malaria vaccines in Mali in West 
Africa, a country where malaria is the biggest killer of both 
children and pregnant women. Our project is at the Malaria 
Research and Training Center, which is a center for research 
excellence directed by Malian scientists and supported by both 
intramural and extramural NIH. Just last month, scientists from 
NIH and the U.S. Army joined with us and our Malian colleagues, 
as well as representatives of a drug company and a large 
foundation, to start planning trials of a Army-developed 
malaria vaccine in Mali. The good news is, that the science is 
moving forward and partnerships are forming. The bad news is, 
new vaccines and drugs, especially those directed against 
diseases that hit the poorest countries the hardest, are not 
going to be cheap. Moving, as you heard, from the laboratory 
bench to getting safe and effective, licensed products into 
people is hugely expensive; and with these diseases it is only 
the public sector that has both the will and the means to make 
it happen.
    As you have also heard, to make progress in the global war 
against infectious diseases, we need to attract the best and 
brightest trainees to our field. NIAID and, in particular, the 
Fogarty International Center at NIH have taken the lead with 
initiatives for training in tropical medicine. We are now 
training Americans in Mali and Malians in America with support 
from these agencies, but we still have to turn away many 
outstanding applicants because we simply don't have the funding 
to support them.
    In conclusion, we are at the threshold of an exciting new 
era in medical progress and the genome sequencing project is 
the best example of that. We have got lots of opportunities for 
new treatments, diagnostics, cures; and our challenge is to 
keep pushing and exploit this progress to improve global public 
health.
    So, with that, I would like to thank you for inviting me to 
testify today.
    Mr. Regula. Thank you for coming. It is quite obvious you 
have many challenges.
    [The information follows:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
                                           Tuesday, March 13, 2001.

          PARATUBERCULOSIS AWARENESS AND RESEARCH ASSOCIATION


                               WITNESSES

CHERYL MILLER, CO-EXECUTIVE DIRECTOR, ACCOMPANIED BY DR. ALBERT FLISS, 
    SCIENTIST AND PATIENT
    Mr. Regula. Cheryl Miller, Co-Executive Director, 
Paratuberculosis Awareness and Research Association.
    Welcome.
    Ms. Miller. Mr. Chairman, thank you for the opportunity to 
speak on behalf of PARA, regarding fiscal year 2002 
appropriations for NIH and CDC. My name is Cheryl Miller. I am 
from Ohio, and I am the mother of a child that has suffered 
from Crohn's disease for 12 long years. I am honored to be here 
today to represent the people of this nation suffering from 
Crohn's disease.
    Incurable, chronic, progressive, debilitating, Crohn's is a 
devastating intestinal disease which most commonly strikes the 
young. Those of us in PARA are well acquainted with the ravages 
of Crohn's disease because we are a patient-based, grass-roots 
effort formed by two moms and others--patients, families 
interested in helping those with Crohn's. We were formed in 
mid-1997. From the trenches, we daily fight the frontline life-
and-death battles with this vicious disease, and the truth is 
that we live in terror. Current Crohn's treatments attempt only 
to maintain patients lives, but do little to reduce the misery 
and nothing to cure this disease.
    I am here today to tell you the good news, for there is 
wonderful news. A rapidly mounting body of evidence implicates 
an infectious cause of Crohn's, a mycobacterium known as MAP. 
In response to this evidence, in May 1999, the NIAID rushed to 
publish an entirely new research agenda, targeting an 
infectious cause of Crohn's. Shortly thereafter, the CDC did 
the same. Indeed, we are in a unique situation with the two 
most highly renowned health organizations in the world having 
set forth precisely what needs to be done, but tragically there 
are still no funding allocations for an infectious cause of 
Crohn's research.
    An infectious cause of Crohn's needs to be urgently 
researched. Therefore, I come to you to plead for Crohn's 
patients. The past 30 years of research, centering on the 
immune system, has done precious little to ease the suffering 
of Crohn's patients. Meanwhile, we now have in our hands 
scientific studies documenting long-term remissions in over 82 
percent of patients using a multiple antibiotic regimen. These 
are the best statistics ever seen in the treatment of Crohn's. 
It is past time to ``break out of this immune system, 
malfunction paradigm'' in Crohn's research. The truth must be 
found, and as soon as possible, for there is another 
unavoidable and grave consideration. If a disease has an 
infectious cause, there is a source of infection.
    MAP causes a disease in cattle known as Johne's disease, a 
disease strikingly similar to human Crohn's disease. In 1996, 
the USDA reported that 40 percent of our large dairy herds were 
infected and, terrifyingly enough, nine out of ten scientific 
studies have determined that MAP may survive pasteurization. It 
appears that the U.S. dairy industry now sees the handwriting 
on the wall. The National Milk Producers Federation has 
suddenly rushed to develop a plan to kill every infected cow in 
this Nation and to request indemnity from the government in the 
amount of $1,300,000,000 so that these cattle are sent to 
rendering, not for human consumption. Additionally, the USDA 
has just recently called in the National Academy of Science for 
assistance. Certainly, these sudden actions should be duly and 
soberly noted as they underscore the urgency and the gravity of 
this situation.
    The U.S. must take urgent steps now to ensure food safety. 
At the same time that the MAP infection rate has dramatically 
risen in cattle, the Mayo Clinic reports that Crohn's has 
increased by 46 percent in the human population. Meanwhile, 
every day in this nation, babies and children consume large 
quantities of milk, milk which may contain live MAP. Failing to 
act will be costly, not only in terms of the human suffering, 
but in financial terms as well, for the cost of treating 
Crohn's is skyrocketing. Curing Crohn's would save 
$5,000,000,000 annually in this Nation. Mr. Chairman, to 
address these urgent concerns we ask the following:
    Allocate $500,000,000 in new funds to NIAID and CDC to 
complete their new research agendas, targeting an infectious 
cause of Crohn's;
    Identify Crohn's as an emerging infectious disease and 
treat it with utmost urgency;
    Encourage those cognizant of food safety to immediately 
address the food safety issues; and
    Finally, since NIAID has stepped to the lead in Crohn's 
research, we ask that you move the responsibility for Crohn's 
disease from NIDDK to NIAID.
    In conclusion, Mr. Chairman, please allow me to thank you 
for hearing our request and for your consideration of these 
most critical concerns facing Crohn's patients, as well as this 
nation as a whole.
    Mr. Regula. What are the symptoms of Crohn's?
    Ms. Miller. It is very devastating. Seventy-five percent go 
through multiple surgeries. It is excruciatingly painful.
    Why don't you tell us the symptoms?
    This is one of our members.
    Dr. Fliss. Basically, the symptoms are chronic diarrhea, 
severe abdominal pain, intestinal perforation, certain 
intestinal obstruction.
    I mean, myself, I got Crohn's when I was 19 years old. I am 
now 40 and I have gone through, like, five surgeries. Several--
two of the surgeries basically were life-threatening.
    Mr. Regula. It attacks the digestive system?
    Dr. Fliss. It basically attacks anywhere in the digestive 
tract, from the mouth all the way down.
    Mr. Regula. Is it a bacterium?
    Ms. Miller. Also systemic, yes.
    Dr. Fliss. There is a mounting body of evidence that 
suggests strongly--the thing is, about this mounting body of 
evidence, it was initiated in the early 1980s, but it has been 
ignored by the majority of the medical community because their 
agenda was to push the immunological cause of Crohn's disease.
    Mr. Regula. Not the treatment?
    Dr. Fliss. Not the treatment. You could use drugs to calm 
the symptoms. I have taken--I take like fifty pills a day to 
now, and I am on--myself, I am a scientist at the University of 
Maryland Medical Center, and I understand these studies very 
well.
    Mr. Regula. When did you discover you had it?
    Dr. Fliss. Nineteen years old, 21 years ago.
    Mr. Regula. Is that normal?
    Ms. Miller. Fifteen to 25; however, 40 percent of cases are 
under 20 years old.
    Mr. Regula. Once you have it, it is a chronic thing?
    Ms. Miller. It is chronic, lifelong, incurable, 
progressive.
    Dr. Fliss. It is forever.
    Mr. Regula. Well, thank you for bringing this to our 
attention. We will be very sensitive to the problem.
    [The information follows:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


                                           Tuesday, March 13, 2001.

                    UNITED TRIBES TECHNICAL COLLEGE


                                WITNESS

DAVID M. GIPP, PRESIDENT, UNITED TRIBES TECHNICAL COLLEGE
    Mr. Regula. Our next witness is David Gipp, president, 
United Tribes Technical College.
    Mr. Gipp. Thank you, Mr. Chairman. It is an honor to be 
here before you. It is good to testify once again before you. I 
want to thank you and commend you for your past service as the 
appropriations subcommittee Chair of the Interior and Insular 
Affairs Subcommittee, Mr. Chairman. My name is David Gipp, and 
I am president of the United Tribes Technical College. I am a 
Lakotah, or Sioux, out of Standing Rock which is in North and 
South Dakota, Mr. Chairman. So again we are very pleased to be 
here and I will make my remarks to the point. Indeed it has 
been a good education for me as well, listening to all the 
health-related issues, and we certainly have a number of them 
throughout Indian country. I thank you for your past support of 
our many tribes and our tribal colleges and universities when 
you served as the subcommittee Chair with the Interior and 
Related Affairs Subcommittee.
    Mr. Chairman, we are here to request and talk about the 
Carl Perkins Vocational Technology Act of 1998 and we are 
recommending that the appropriation for tribally controlled 
postsecondary vocational institutions be authorized or be 
appropriated at a level of $6,000,000, which is about $400,000 
over the current authorization.
    The second thing that we would like to point out is that we 
do have a great number of needs when it comes to the type of 
institutions that we operate, which has been going on for about 
32 years. We are one of those institutions that are solely 
dedicated to the vocational and technical learning of American 
Indians and we serve about 40 different tribes annually from 
throughout the United States.
    Mr. Regula. Which tribe operates the school?
    Mr. Gipp. We have five different tribes that have come 
together and created a nonprofit organization.
    Mr. Regula. Is it residential?
    Mr. Gipp. It is residential.
    Mr. Regula. What is your enrollment?
    Mr. Gipp. We have about 375 adults and about 250 to 270 
children on campus. It is an old military fort that we took 
over.
    Mr. Regula. What range--do you have a pretty wide 
curricular range?
    Mr. Gipp. We have nine certificate programs.
    Mr. Regula. It is a 2-year program?
    Mr. Gipp. Yes, 1- and 2-year programs at the associate of 
applied science levels, all in technical areas, Mr. Chairman.
    Mr. Regula. Do most of your graduates get placed in gainful 
employment?
    Mr. Gipp. They sure do. We have about an 80 percent average 
annual placement rate for all of our graduates that come out.
    Mr. Regula. Do they have to leave the area? That is always 
the problem.
    Mr. Gipp. We found that a majority of them have to leave 
the area, but we also are finding that as tribes begin to 
develop their local economies that we are seeing more 
employment in those areas, by the way.
    Mr. Regula. So some of the jobs will come because you have 
the training facility.
    Mr. Gipp. Yes, very much so. When you talked about some of 
the health-related issues, some of the things we are doing, for 
example, are in the area of injury prevention. Unfortunately, 
we have some of the worst statistics when we talk about injury 
prevention on our different tribal communities. So we have 
developed a curriculum to begin to develop specialists to 
specifically address that area. Another is developing a food 
and nutrition program for specialists to go out and work within 
our communities, given the high diabetes rates that we have 
among youth and adults in our tribal communities. We are also 
beginning to try to develop our part with respect to computer 
and computer technology by developing programs in training 
areas in those areas as well, Mr. Chairman. We have a high 
number of students that are female. We serve single-parent 
families as well as married couples and their children on our 
campus and, as a result, we have two day-cares and an 
elementary school that serve the children of the adult students 
on our campus.
    I always talk about the old military fort that we took 
over. It is called the Abraham Lincoln Post. It was originated 
in about 1900. But I always talk about it how the Indians took 
over the fort for, in this case, peaceful purposes. I think we 
are doing a good job and we look forward to a continuance of 
that effort.
    Mr. Chairman, I would like to add a couple of things. That 
is, when I talk about all of our tribal colleges and 
universities, of which there are 32 including us. Some are 
right on the reservation. They are in need of continued help of 
the Department of Education and the Title 3 higher education 
programs. Additionally, they need help in the area of 
vocational education in being able to provide some of those 
programs locally, because we can view them from a campus-based 
area, but we are also working with the needs of our tribal 
governments, and our tribal colleges are a member of that 
locally.
    Mr. Regula. Thank you very much, and I am aware of that 
from my previous experience on Interior. I am very sensitive to 
your problems.
    Mr. Gipp. Thank you Mr. Chairman.
    [The statement of David Gipp follows:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
                                            Monday, March 13, 2001.

              NATIONAL COUNCIL ON REHABILITATION EDUCATION


                                WITNESS

AMOS SALES, PROFESSOR OF REHABILITATION, UNIVERSITY OF ARIZONA
    Mr. Regula. Our next witness is Dr. Amos Sales, professor 
of rehabilitation at the University of Arizona.
    Welcome, Dr. Sales.
    Mr. Sales. Thank you very much Mr. Chairman. I appreciate 
the opportunity and consider it a singular honor to be able to 
present before the subcommittee today. It is particularly an 
honor to represent the National Council on Rehabilitation 
Education.
    Mr. Regula. Is the type of rehabilitation that the States--
vocational rehab, for example, for injured workers?
    Mr. Sales. About a third of our graduates work within the 
State-Federal vocational rehabilitation program, another third 
work within the private sector, and then another third within 
private rehabilitation agencies. We prepare a wide variety of 
professionals, rehabilitation counselors, vocational 
evaluators.
    Mr. Regula. You do this at the university?
    Mr. Sales. Yes, sir. Most of these programs are master's 
level. At my institution we have an undergraduate, master's and 
doctoral sequence of study, and produce a singular number of 
people to go out and meet the need.
    Mr. Regula. That is a big challenge. How do we play in? Do 
we provide money for this?
    Mr. Sales. Let me share with you in terms of the 
Rehabilitation Act, or since its first inception in 1920.The 
appropriations from Congress has been quite well known, really. You 
first started that program, the Rehabilitation Act, to ensure equality 
of opportunity for individuals who do not have it because of 
disability. You continued to fund it to provide for such students, for 
such individuals. What you have also done as a Congress since early on 
with the Rehab Act is provide specialty training for people, for 
professionals, to ensure quality service or provide it for individuals 
within that system. That is the kinds of people that we have produced, 
rehabilitation counselors, vocational evaluators, and job placement 
professionals.
    I am here to request on behalf of my Association a 25 
percent increase in the training funds within the 
Rehabilitation Act. The training funds currently are just a 
little over $39,000,000. We would request another $10,000,000, 
to put it at $50,000,000. Those training funds provide for not 
only professional programs at higher ed institutions but for 
in-service training within State and Federal----
    Mr. Regula. Are most of these matched by other services 
such as State or tuition----
    Mr. Sales. The training component is actually matched in 
terms of the higher education component. It is not matched by 
local--some of the training funds are, the other half--but the 
monies that go specifically to higher education institutions 
are not matched with local monies. Those funds are allocated in 
a grant formula. Something like 75 percent of the funds have to 
go in support of students. Only 25 percent are for 
discretionary use.
    Mr. Regula. Is the University of Arizona a State-sponsored 
institution?
    Mr. Sales. Yes, it is. It is a land grant institution.
    Mr. Regula. So if they are offering the course, they would, 
in some respects, be supporting this program, wouldn't they?
    Mr. Sales. Yes. There are programs nationally that do not 
have Federal funds at all. We currently produce about twice as 
many graduates as are funded through the Federal Government. 
But the realities are with the new requirements that have 
occurred because of legislation and because of guidelines for 
how to implement services, there is now a major need for new 
graduates within start-up positions, and there is a major need 
to retrain people who are already on board.
    Mr. Regula. I suspect there are new techniques in the field 
of rehabilitation that you are exploring and developing.
    Mr. Sales. Particularly within our traditional 
rehabilitation counseling programs, there is a major need for 
faculty to stay on top of everything that is sort of blossoming 
in terms of new knowledge and new skills in this arena.
    Mr. Regula. Do you cover a wide range of ages?
    Mr. Sales. In terms of clients?
    Mr. Regula. Yes.
    Mr. Sales. You did hear from some people earlier. The 
rehabilitation teacher is a graduate of one of our kinds of 
programs. Rehabilitation counselors work with people age 15 and 
up.
    Mr. Regula. How about the military? Do they use your 
services?
    Mr. Sales. They do through contractual arrangements, 
Veterans Administration linkages with VR, yes.
    Mr. Regula. It is certainly a major need, I am sure.
    Mr. Sales. Let me emphasize a very minor amount of 
increase, $10,000,000, about a 25 percent increase in terms of 
training funds needed at this time. I will forego trying to 
read anything at this point.
    Mr. Regula. Where is the university located?
    Mr. Sales. The University of Arizona is located in Tucson.
    Mr. Regula. Do they have regional campuses, I presume?
    Mr. Sales. We have one regional campus. Our rehabilitation 
program itself delivers what we call a work-study program 
throughout the State. We have courses we deliver on the Navajo 
Nation. We have a very high percentage of minority individuals 
involved in our sequence of study.
    Mr. Regula. You would work with the school that we have 
heard about?
    Mr. Sales. I have not worked directly with that school. I 
am familiar with that school. Our programs are more at the 
bachelor's level, master's, and doctoral.
    Mr. Regula. According to the Wall Street Journal, Tucson is 
experiencing enormous growth.
    Mr. Sales. Very much so. We try not to let people know how 
great a city Tucson is, but it happens. Thank you very much.
    Mr. Regula. Thank you.
    [The statement of Amos Sales follows:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
                                            Monday, March 13, 2001.

                 NATIONAL INDIAN EDUCATION ASSOCIATION


                                WITNESS

JOHN W. CHEEK, EXECUTIVE DIRECTOR, NATIONAL INDIAN EDUCATION 
    ASSOCIATION
    Mr. Regula. Our last witness is Mr. John Cheek, executive 
director, National Indian Education Association. Mr. Cheek.
    Mr. Cheek. Good morning, Mr. Chairman. Save the best for 
last; is that correct?
    Mr. Regula. We certainly see it that way.
    Mr. Cheek. The last time I had the opportunity to testify 
before you was in the Interior subcommittee, so it is good to 
see you have moved up, I think, apparently; at least a floor or 
two, so it is good to see you again.
    The National Indian Education Association is a national 
nonprofit American Indian, Alaska Native and Native Hawaiian 
advocacy organization. We are nonprofit. We have over 3,000 
members and operate annually on a budget of less than half a 
million. But we have a very large responsibility in ensuring 
that Indian education is funded as well as it can be, but also 
meets the needs of all of our students throughout the United 
States. The Federal Government is responsible for only two 
school systems in this country. Those two school systems 
include the Department of Defense and the Bureau of Indian 
Affairs program, education program. The disparity in funding, I 
think, is evident when you look at the categories of those two 
schools, but the greatest needs in this country----
    Mr. Regula. You do get impact aid.
    Mr. Cheek. Yes we do. Literally all of our Indian students 
throughout Indian country in the Bureau of Indian Affairs and 
the Department of Education receive services through programs 
that are appropriated by this committee. So we appreciate that.
    Currently, the majority or the largest program within the 
Department of Education is the Office of Indian Education. The 
current year funding for that program is about $115.5 million, 
which was a major increase from the year prior, and we 
appreciate the work of this committee in helping get that 
through last year. We are requesting an increase for the 
formula program which serves 1,200 school districts throughout 
the country and over 450,000 Indian students. The reason we are 
asking for an $18 million increase for that program is to help 
our Indian kids meet the anticipated higher standards that the 
Bush administration is proposing. As you are well aware, our 
Indian students----
    Mr. Regula. Is literacy a problem?
    Mr. Cheek. Yes, it is. Almost every category of educational 
program or service affects American Indians at the lowest 
level. We have the highest dropout rates, the lowest academic 
achievement rates, and the highest unemployment of any 
population group in this country.
    In terms of funding our programs, Indian tribes and our 
Indian programs do not really get support from State programs 
or our States in general, so we are totally reliant on Federal 
support to meet the needs of our Indian students. A couple of 
programs under the special programs for Indian children that 
have not been funded since 1966 we would like to see funding 
requested for. Under the special programs, there is a current 
program in there that just received funding in 2000, one called 
the American Indian Teacher Corps. That followed with the 
previous administration's move to increase the number of 
classroom teachers by 100,000.
    Mr. Regula. Do you have a problem attracting teachers?
    Mr. Cheek. Attracting and keeping teachers. We have a high 
turnover rate.
    Mr. Regula. Do you get a lot of Native Americans who are 
willing to get educational degrees and teach?
    Mr. Cheek. That program will let us know definitively if 
that is the case. But, in general, in speaking about the Bureau 
of Indian Affairs schools, a lot of teachers that are 
interested in working in a reservation setting often leave 
after a year. I was speaking with a gentleman at a school and 
he said the turnover rate is 60 percent after the first year. 
The turnover rate is really high. Attracting good teachers is 
difficult, and a lot of them do not want to live in the remote 
areas where they would have to go. The programs we would like 
to see refunded, which was previously funded in 1995, is 
fellowships for Indian students. We have a major initiative in 
OIE to fund teachers, but we also need doctors, engineers, 
professionals in all fields. We would like to see that funded 
at $5,000,000. Gifted and talented students, we would like to 
see that program funded at $2,000,000. We are really trying to 
focus all of our attention and resources on the students with 
the most problems, but there is a minority group within the 
Indian population of high-achieving students. We need to help 
them.
    Grants to tribes for education, administration and 
planning, or tribal education departments. We would like to see 
that program funded. It is a new, it was introduced in the ESE 
reauthorization of 1994 but has never been funded. That would 
enable tribes to develop their tribal education department, 
establish codes, and really meet the needs of their students.
    Finally, the National Advisory Council on Indian Education. 
Their offices shut on May 10, 1996. They were an advisory 
council----
    Mr. Regula. You would like to see that reconstituted?
    Mr. Cheek. Yes. I was the last acting director, so I 
remember specifically, 5 o'clock on May 10. We would like to 
see them restored and able to do their work.
    Mr. Regula. Thank you very much, and I know the problems, 
sir. Challenging, based on my other experience in Interior, and 
education is the key.
    Mr. Cheek. That is right.
    Mr. Regula. Thank you.
    Mr. Cheek. Thank you very much.
    [The statement of John Cheek follows:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
    Mr. Regula. I thank all of you that have been patient this 
morning. This concludes today's hearing. We stand adjourned.
                                         Wednesday, March 14, 2001.

                NATIONAL ORGANIZATION FOR RARE DISORDERS

                                WITNESS

DIANE E. DORMAN, SENIOR DIRECTOR FOR PUBLIC POLICY, NATIONAL 
    ORGANIZATION FOR RARE DISORDERS, INC.
    Mr. Regula. We will get the hearing started. We have a long 
list of witnesses today, so we will have to keep moving along 
for those of you have not been here, or at the previous hearing 
yesterday.
    This, of course, is the Committee on Labor Health, Human 
Services, Education, and so on. We a lot of tough decisions 
that we have to make. The testimony you provide will be very 
important to us.
    Obviously, we do not have enough time, and certainly not as 
much as I would like; but in order to provide a hearing for 
everyone that would like to be heard, we have to do it in five 
minute increments.
    We had to turn down a lot of requests. Frankly, we probably 
had twice as many or more requests for a hearing. We do it on a 
lottery basis, so that everybody gets an equal chance.
    For those you that did not hear me yesterday, I said that 
this Committee is like the Bible says. There are two great 
commandments: ``Love the Lord'' and ``Love Your Neighbor,'' and 
this is the ``Love Your Neighbor'' committee. So you all are my 
neighbors today. We will be very sensitive to what you have to 
say, and will be sensitive to your needs when we have to 
finally do the markup, in which we apportion the resources.
    We will not have much money as we like or as we need, but 
we will do the best we can in trying to address the problems. 
It is a wide range of responsibilities.
    It is all the medical research, all the welfare programs, 
really, all the programs that help people and all the education 
programs. The President has given us some additional funds, but 
we will have additional responsibilities with his new program 
on education.
    So as I said before, we will be as fair and as diligent as 
possible in using the resources. Unfortunately, we will have to 
cut you off at five minutes. Otherwise, we will not get the 
schedule finished, and it will not be fair for those who come 
later on. I want to make that everybody gets a chance to be 
heard that is on the schedule.
    So we will get started today. The first witness today is 
Diane Dorman, the Senior Director for Public Policy, the 
National Organization for Rare Disorders, Incorporated. Welcome 
Diane. It is nice to have you here.
    Ms. Dorman. Thank you, Mr. Chairman and members of the 
Committee, for allowing the National Organization for Rare 
Disorders to testify before you today, regarding funding for 
the National Institutes of Health.
    I want to express our deep appreciation for all you have 
done to ensure increased funding for biomedical research; 
research that has been used to reduce suffering and to save 
lives.
    I am here today to ask that the Office of Rare Diseases at 
the National Institutes of Health be adequately funded to 
ensure that all Americans, not just a select few, have access 
to the incredible work being done at the NIH.
    Today, only ten cents for each and every person suffering 
with a rare disease or disorder is allocated to the ORD. I am 
asking for a mere $1.00 for each man, woman and child, who must 
sometimes wait years for diagnosis; $25 million dollars to 
uncover new knowledge that will lead to better health for 
everyone.
    We are also asking that the ORD be given permanent status 
to allow for a diagnostic and research center, and to expand 
the authority of the office. Currently, ORD does not have 
permanent line item status at the NIH budget; nor does a 
federation of approximately 140 health organizations and over 
70,000 individual patients, health care providers, and clinical 
researchers dedicated to helping people with rare ``orphan'' 
diseases.
    An orphan disease is defined by statute as any disease or 
condition impacting less than 200,000 Americans. It makes no 
difference whether your are male or female, rich or poor, young 
or old, white, African-American, Latino, Asian or American 
Indian. These diseases affect everyone.
    Rare orphan diseases include such better known diseases as 
Sickle Cell Anemia, Tay Sachs, Hemophilia, Fanconi's Anemia, 
Tourette Syndrome, Lou Gehrig's disease, and scleraderma.
    They also include obscure diseases such as Landau Kleffner 
Syndrome, Wilson's Disease, Mastocytosis, Canavan Disease, and 
Fibrodyplasia Ossifician Progressiva (FOP). It is a lot easier 
to say FOP.
    In a recent article by Thomas Maeder in the Red Herring, 
FOP is described as ``one of the strangest and rarest diseases 
of all, with about 125 patients in the United States.''
    The body mysteriously transforms itself, its muscles, 
tendons, and ligaments into bone. Internal organs are not 
affected, and so patients can live normal life spans, unless 
they die from complications secondary to their immobility, like 
pneumonia, falls or choking on aspirated food.
    Our commitment to those 125 patients and the estimated 25 
million other people suffering with the approximately 6,000 
often debilitating and devastating diseases is the 
identification, treatment, and cure of rare disorders. 
Approximately, 5,000 of those conditions are genetic in nature.
    In fact, no research is being pursued for most of them. You 
can imagine the frustration that many of these people feel, 
knowing that no one is willing or able to conduct vitally 
needed clinical studies to develop new treatments or cures.
    The mission of the National Institutes of Health is to 
uncover new knowledge that will lead to better health for 
everyone. Yet, millions are being left behind, simply because 
they lack the knowledge or vast resources that are available to 
many larger disease groups that allow them to exploit the 
resources at the NIH.
    In 1989, the National Commission on Orphan Diseases 
estimated only 30 percent of the 25 million patients suffering 
from rare diseases receive a diagnosis in three to five years, 
after the onset of symptoms. That works out to about 7.5 
million patients who are shuffled from specialist to 
specialist, year after year.
    Fifteen percent, or approximately 3.7 million people, wait 
seven years or more. Those statistics are both frightening and 
unacceptable.
    To help fill that void, the Office of Rare Diseases at the 
NIH was created in 1993. Its mission is to stimulate and 
coordinate research on rare diseases; compile and provide 
information on rare diseases; co-fund with the NIH Institutes 
and other organizations approximately 50 workshops, in order to 
stimulate research when none exits; establish research 
priorities; and take advantage of sometimes fleeting scientific 
opportunities. There are quite a few others, but I will not go 
through all of them.
    This small office, funded with little more than $2.2 
million for the fiscal year, is the only central Government 
resource available to 25 million people.
    When you do the math, that $2.2 million works out to less 
than ten cents for each and every American suffering with a 
rare disease. While the NIH is enjoying increases of 14 percent 
or more, the ORD has seen increases of little more than three 
percent.
    We ask today that this Committee consider the creation of 
one intramural research and diagnostic center for the study of 
rare diseases.
    The center should conduct research on rare diseases and 
conditions; take advantage of emerging research opportunities; 
and augment NIH Institute's research for neglected rare 
diseases.
    We also ask that the responsibilities of the ORD be 
extended to include: oversight of the intramural research; 
recruitment of the qualified academic scientists; support of 
grants; collaboration with industry to develop gene vectors; 
expansion of existing programs to provide support for 100 
scientific workshops.
    Because rare disease patients are particularly impacted by 
the cost of diagnosis treatment and ancillary support services 
that can reduce family to poverty, and because patients must 
travel long distances to academic hospitals to see the few 
specialists who work on their particular disease, we also ask 
that this committee consider the creation of four regional 
extramural diagnostic and research centers, to expand patient 
outreach activities, and facilitate the development of post-
Doctoral training fellowships.
    Mr. Chairman and members of the subcommittee, we deeply 
appreciate Congress' commitment to increase research for the 
NIH, because many have benefitted from the ground-breaking work 
already being done.
    We respectfully request that you appropriate a minimum of 
$2 million the Office of Rare Diseases for the coming fiscal 
year, for 25 million people, who look to the members of 
Congress for help.
    Appropriating just $1 for each rare disease patient in 
America who is suffering with a rare disease, rather than the 
current funding level of less than ten cents, is a win/win 
situation.
    Patients win when their symptoms are alleviated. Families 
win when their loved ones no longer suffer. Society, as a 
whole, wins, when patients are able to return to school, or to 
work, to become productive tax-paying citizens. Pharmaceutical 
and biotechnology companies win, when they are able to develop 
new therapeutic products.
    The scientific community wins when the knowledge they gain 
can be applied to more prevalent diseases. Finally, the 
Government wins when the drain on health care dollars is 
minimized.
    I would like to leave you with a quote from Thomas Mader's 
article, The Red Herring. ``Yet even if the worries of the few 
were laid aside, and one cared only about bringing the biggest 
benefits to the greatest number of people, it would still make 
sense to study rare diseases.''
    ``We understand health through the observation of illness, 
and the more illnesses we survey, the more we are likely to 
learn.''
    Again, thank you for your continuing commitment to the 
National Institutes of Health, and your recognition today of 
the unmet needs of those who suffer with rare diseases.
    [The testimony follows:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
    Mr. Regula. Thank you.
    I do want to introduce Patrick Kennedy, the newest member 
of our subcommittee. We are happy to have you as a member, 
Patrick. We have worked together on aging problems over a 
period of time.
    Thank you for your testimony.
    I see another new member of the subcommittee, Don Sherwood, 
from Pennsylvania. Don, we're happy to have you here, also.
    Mr. Sherwood. Thank you, Mr. Chairman.
    I am honored to be appointed to this important committee. I 
am delighted to serve under your leadership.
    Mr. Regula. Thank you, and for those of you who are not 
familiar with the lighting system here, I regret this, but we 
have to stick to five minutes, or we will be here tonight.
    The green light is four minutes. Then there is a caution 
light, and that gives you one minute to wrap up. Then at five 
minutes, the buzzer goes and the red light. So we'll try to 
stick with it, in the interests of getting everybody on, and 
everybody having their time. Our next witness is Meredith Tilp, 
Vice President of Childsight.
                              ----------                              

                                         Wednesday, March 14, 2001.

                               CHILDSIGHT


                                WITNESS

MEREDITH TILP, VICE PRESIDENT, CHILDSIGHT
    Ms. Tilp. Chairman Regula, congratulations on your 
Chairmanship.
    Mr. Regula. Thank you.
    Ms. Tilp. I appreciate the opportunity to speak to the 
committee on behalf of Helen Keller Worldwide.
    I wish to address today the welfare of thousands of 
adolescent students who suffer from poor vision, and whose 
academic performance is at risk.
    Thank you Mr. Chairman and the committee for the support 
you have given the Childsight Program. The funding of $1.25 
million dollars, recommended by the committee last year, has 
helped us greatly in our mission is to improve the vision and 
educational performance of students living in rural and urban 
poverty.
    Helen Keller Worldwide is the United States-based private 
voluntary organization once guided by and now dedicated to the 
spirit of deaf-blind crusader, Helen Keller.
    Since 1915, we have worked to battle blindness in the most 
neglected and under-served reaches of the world. In 1994, Helen 
Keller Worldwide developed a program to assist adolescents in 
the United States with vision loss, and that program is 
Childsight.
    Children's eyes change as they reach puberty. As a result, 
approximately twenty-five percent of all adolescents between 
the ages of 11 and 14 will require eye glasses.
    Unfortunately, many of those children's economic situation 
hinders their ability to obtain glasses. About seven million 
impoverished U.S. children in the United States need vision 
screening, and about two million will need eye glasses. Our 
program Childsight aims to meet that need. Childsight 
recognizes the correlation between academic performance and the 
basic need to see properly.
    By working directly with junior high schools and providing 
free vision screening and eye glasses, all within the school 
building, Childsight improves the student's vision and also 
academic performance. Improved classroom participation, grades 
and student behavior are proven outcomes which enhance our 
motto, ``Bringing education into focus.''
    We have screened over 174,000 children and provided 
prescription eye glasses to 27,143 students who needed them. 
Programs continue to operate in Los Angeles, California; 
Baltimore, Maryland; East Orange, Irvington, Newark, Orange and 
Passaic, New Jersey; Bronx, Harlem, Washington Heights, New 
York; and Cleveland, Ohio.
    Thanks to Federal funding for the past two years, 
Childsight has also expanded to more cities: Atlanta, Georgia; 
Dayton, Ohio; El Paso, Texas; New Haven, Connecticut; and 
Oakland, California. Plans are underway to begin a pilot 
program in Chicago, Illinois and Philadelphia, Pennsylvania by 
the Fall.
    Allow me to share with you some comments and observations 
from students, parents, nurses and educators associated with 
Childsight Dayton, Ohio and New Haven, Connecticut students.
    ``These glasses will help me to take my driving test. Thank 
you!''
    ``I feel taller with my glasses.''
    ``I could not see the board very well and now I see a lot 
better.''
    ``I can tell there is a big difference.''
    This is from a grateful parent. ``Thank you for making my 
daughter smile again. She has not taken them off her face yet, 
only to show me the difference.''
    Dr. Kender, an optometrist from Dayton, Ohio commented, 
``95 percent of the children accept the glasses and think that 
they are pretty cool.''
    The program is very worthwhile because I think it catches a 
lot of the kids who would otherwise fall through the cracks. 
The benefits of this program are real and evident. Eighty 
percent of the teachers in Los Angeles reported an improvement 
in their students' grades after a Childsight visit. At Newark 
schools, 91 percent of teachers report improved classroom 
participation and behavior.
    As Vice President of Childsight, I can report personally on 
this transformation. It is one that I have witnessed on visits 
to some 338 middle schools where we work from Atlanta, to 
Dayton, Ohio, to New Haven, Connecticut. The difference that a 
pair of eye glasses make can make a child's life substantially 
different and is very cost effective.
    I have watched them see the homework assignment for the 
first time; read the map on the wall; know the capitol of 
Connecticut or the capitol of Ohio from the map; read the 
periodic table in science; and write down that math equation on 
the blackboard.
    I ask the committee to consider recommending at least $2 
million in fiscal year 2002 to expand Childsight and its 
current sites, and to launch this important program in 
additional locations.
    Mr. Chairman and ladies and gentleman, your attention and 
consideration is greatly appreciated. Thank you.
    [The testimony follows:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
    Mr. Wicker. Mr. Chairman?
    Mr. Regula. Yes.
    Mr. Wicker. Let me just ask, how are you funded? I know 
that you are asking for $2 million, but what is your source of 
funding?
    Ms. Tilp. We have $1.25 million from the Department of 
Education, and about $2 million to $3 million grants from other 
foundations and corporations.
    Mr. Wicker. Not for profit donations?
    Ms. Tilp. Right.
    Mr. Wicker. Do you work in connect with civic clubs like 
Lions International, which also provides this type of service?
    Ms. Tilp. Of course, and one of the main points about our 
program is that we actually dispense and provide the eye 
glasses right on the site in the schools. While a lot of 
programs provide free vouchers, or refer students out for eye 
glasses, they do not go and get them; especially poor children. 
So we provide them right on the site.
    Mr. Wicker. I take it the optometrists are actually 
donating their services for this?
    Ms. Tilp. No they are not. They are paid.
    Mr. Wicker. Do you pay full freight for the optometric 
services?
    Ms. Tilp. We pay what a regular daily wage is for 
Optometrist. That is very important. Otherwise, they would not 
be available for that particular slot of time during the school 
day that we need time to see 60 or 70 children.
    Mr. Wicker. Thank you, Mr. Chairman.
    Mr. Regula. Thank you very much for coming.
    Mr. Wicker, my understanding is that you will be 
introducing Julie McCord, our next witness, an Infection 
Control Nurse.
    Mr. Wicker. Thank you very much Mr. Chairman. As Ms. McCord 
makes her way to the table, I will tell the subcommittee that 
she is a representative today of APICE, the Association for 
Professionals in Infection Control and Epidemiology.
    I am particularly delighted to introduce Julie today, 
because she and I grew up in the same hometown. I graduated 
from high school way before she did, but we still grew up in 
the same hometown. I am proud that she is an Infection Control 
Nurse for the North Mississippi Medical Center.
    She is here today with a simple message, Mr. Chairman. That 
is, I think, the experts, the scientists, the positions at the 
centers for disease control have been doing a great job in the 
area of protecting the general population and people in the 
work place from Tuberculosis.
    They are to be commended for that. There is really no need 
at all to put on top of that a OSHA regulation to try do the 
same thing. I think Mrs. McCord has some data from a study from 
the Institute of Medicine to back that up.
    We are delighted to have you, Julie, and I hope that you 
will stick to the five minutes.
                                         Wednesday, March 14, 2001.

                    NORTH MISSISSIPPI MEDICAL CENTER


                                WITNESS

JULIE R. McCORD, INFECTION CONTROL NURSE, NORTH MISSISSIPPI MEDICAL 
    CENTER
    Ms. McCord. I shall try. Good morning. My name is Julie 
McCord. I am an infection control nurse at North Mississippi 
Medical Center, which is in Tupelo, Mississippi.
    I am here today representing the Association for 
Professionals in Infection Control and Epidemiology (APIC). 
APIC is a non-profit organization, which represent nearly 
12,000 health care workers, who work across a continuum of 
health care.
    APIC is a strong proponent of protecting patients and 
health care workers through science-based programs such as 
those, Mr. Wicker mentioned, for the Center for Disease Control 
and Prevention (CDC).
    We are extremely concerned, however, about the regulations 
that are not based upon sound science and are unnecessary and 
costly to implement. Specifically, I am referring to the 
proposed OSHA rule to prevent occupational exposure to 
Tuberculosis.
    OSHA's proposed requirement would place an additional 
burden on health care providers while failing to add protection 
for health care workers.
    We are in dire need of Congressional assistance in opposing 
this proposed rule.
    We greatly appreciate the efforts of Congressman Roger 
Wicker, who, at our request, sponsored language in the fiscal 
year 2000 Appropriations Bill calling for an independent study 
of the proposed rule by the Institutes ofMedicine or the IOM.
    This study resulted in the publication of the report, 
``Tuberculosis in the Work Place,'' which was issued by the IOM 
on January 16, 2001. We would just like to highlight seven of 
the report's major finding.
    One: health care workers as a group are not at an increase 
risk;
    Two: the primary risk to health care correctional and other 
workers now comes from patients, inmates, or clients with 
unsuspected, undiagnosed infectious TB.
    There is no regulatory standard that could ever address 
this risk, since TB is not even suspected in these patients.
    Three: CDC guidelines for the prevention of the 
occupational exposure to TB have been implemented, as 
appropriate, and or working.
    Four: OSHA overstated the risks to health care workers by 
using outdated information and dated from outbreaks to craft a 
proposed rule that is unnecessary and would be ineffective and 
costly.
    Five: OSHA vastly over-estimated the benefit that could be 
derived form implementation of its proposed rule.
    Six: a respiratory protecting program should be tailored to 
the level of risk within that facility.
    Seven: the proposed rule will not allow the necessary 
flexibility for organizations to adopt the TB control measures 
that are most appropriate to the level of risk facing their 
individual workers.
    With this information, Congress should take further and 
stronger action to ensure that this rule, which will be 
virtually ineffective and overly burdensome to facilities, is 
not issued.
    I am also speaking to you today as someone who had direct 
experience with TB disease. My mother was diagnosed with TB in 
the 1950s. In the years that followed, she suffered so many of 
the complications as a direct result of TB, which contributed 
unfortunately to her death in 1995.
    I can tell you from first-hand experience that TB is a 
truly devastating disease. I can also tell you that it is a 
public health issue, not a facility-specific issue. Health care 
workers are already protected from patients with known or 
suspected TB.
    In fact, the rate of TB in health care workers is lower 
than the rate among the general population, and the overall 
incidents of TB in the U.S. is now at its lowest level ever 
recorded.
    TB is a public health issue because it is in our 
communities and largely undetected. People with active TB 
disease, who go on undetected, pose a risk to others until they 
are identified and until they are isolated and treated.
    Strengthening our public health programs will allow us to 
target prevention and treatment program to high-risk 
populations, particularly immigrants to provide direct observed 
therapy, and to thoroughly investigate all cases.
    In closing, I would like to make one final point, as 
someone who has lost a very dear family member to the 
complications of TB. If I believed for one second, for one 
moment, that this would prevent people from contracting this 
terrible disease, I assure you, I would not be testifying 
before you today.
    The OSHA TB rule will offer added protection for workers 
and will be logistically and financially burdensome for 
facilities nationwide.
    Thank you for your attention.
    [The testimony follows:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
    Mr. Wicker. Mr. Chairman, let me just make a quick comment. 
I appreciate the testimony. I appreciate the work that APICE 
has done over the last two or three years to bring this to the 
Congress' attention.
    Mrs. McCord comes here with no pecuniary interest in a 
health care facility. She comes here based on her membership in 
this organization. They are solely concerned with protection of 
patients, in protection of the health care workers, because 
they, themselves, are the workers. They are concerned that an 
overreaching OSHA regulation is going to actually drive up the 
cost of health care.
    We commissioned this study. Congress authorizes Federal 
taxpayer funds to pay for it. I hope that we will pay attention 
to it Mr. Chairman, and go with the scientists and physicians 
at the CDC, who have been doing a great job so far.
    Thank you, Mr. Chairman.
    Mr. Regula. Thank you.
    Ms. Tilp. Thank you.
    Mr. Regula. Our next witness is Kim Vaughn. She will be 
introduced by our colleague, Mr. Hoyer.
    Mr. Hoyer. Thank you very much Mr. Chairman. We have two 
witnesses. Dr. Stewart Kassan, Mr. Chairman, and Kim Vaughn. 
Dr. Stewart is from Denver, Colorado, and a graduate of George 
Washington University, one our local educational institutions. 
Kim Vaughn is a suma cum laude graduate of the University of 
Georgia, and Mrs. Georgia America. They are here to talk about 
Sjogren's Syndrome.
    Mr. Chairman, as you know, I have been on this committee 
for some time. I have been impressed when individuals came to 
our committee and talked to us about diseases, syndromes and 
others that we may never have heard of and have no exposure to; 
particularly, those who have been victims of a particular 
disease or disorder expressing to us in personal terms the 
impact that it has had on their lives. I think that is 
particularly compelling testimony.
    Kim Vaughn suffers from Sjorgren's Syndrome and it takes 
the courage for people like yourself who have come before us 
and say, look, this is the issue. You need to address this and 
NIH needs to address it.
    As I understand it, Mr. Chairman, there are two to four 
million Americans who suffer from this disease. So I know that 
we all look forward to hearing their testimony.
                              -----------

                                         Wednesday, March 14, 2001.

                           SJORGREN'S SYNDROME


                                WITNESS

 KIM VAUGHN, PATIENT DR. STUART S. KASSAN, IMMEDIATE PAST CHAIR, 
    MEDICAL AND SCIENTIFIC ADVISORY BOARD, SJORGREN'S SYNDROME 
    FOUNDATION
    Ms. Vaughn. Thank you Mr. Hoyer. Mr. Chairman and members 
of the subcommittee. My name is Kim Vaughn, and I have 
Sjorgren's Syndrome. I am here on behalf of the Sjorgren's 
Syndrome Foundation.
    I have come all the way from Marietta, Georgia, to tell you 
my story. I want to thank you for that opportunity. I am a 
model, a former Mrs. Georgia America, and the mother of two 
energetic boys.
    I am a wife, a daughter and a sister. But I know that what 
you cannot see is that I have a disease, and that disease is 
Sjorgren's Syndrome.
    This disease has affected my life. It has affected every 
member of my family's life. Sjorgren's Syndrome is an auto-
immune disease. While it can affect any organ in the body, it 
targets the moisture-producing glands.
    Can you imagine your eyes constantly being dry because you 
do not produce tears? Can you imagine what it is like not to 
have saliva, so that you cannot eat many common foods? Can you 
imagine being so exhausted every night that you collapse at 
8:00 p.m?
    It is hard enough to raise two boisterous boys with a 
normal energy level. I live with pain; joint and muscle pain 
are a big part of Sjorgren's Syndrome. I know it is hard for 
people to understand the impact of pain fatigue.
    It might seem minor to have dry eyes and a dry mouth. But 
these symptoms are devastating; to have your eyes and mouth to 
dry all the time; being susceptible to infection; always having 
to carry moisturizing eye drops and drinking water wherever I 
go. These thing greatly affect the quality of life.
    I live with fear. Will I be one of the five percent with 
Sjorgren's, who gets lymphoma and leaves a wonderful husband 
and kids behind, because this disease did not seem urgent and 
important enough, or because my symptoms cannot be seen?
    When I was pregnant, I had to worry about my child being 
born with fetal heart block because of my Sjorgren's. Once I 
had my children, I worried if I would have the energy to take 
care of an infant and be able to nurture a baby from infancy to 
childhood.
    I also worry if my children are susceptible to this 
illness. I was very lucky I was diagnosed quickly. It took only 
a year and a half. Sjorgren's might be a common auto-immune 
disease, but most women suffer for years before they are 
diagnosed.
    When we are diagnosed, there is not too much to be done for 
us except treat the symptoms. Many times, this is ineffective.
    The Sjorgren's Syndrome Foundation greatly appreciates your 
continued support of Federally-funded medical research. Please 
help us to take advantage now of the escalating breakthroughs 
in medical research to unlock the mysteries of auto-immunity; 
particularly, the mysteries of Sjorgren's Syndrome. Thank you.
    [The testimony follows:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
    Dr. Kassan. Mr. Chairman and members of the subcommittee, 
good morning. I am Stuart Kassan, a medical doctor and clinical 
professor of medicine at the University of Colorado Health 
Sciences Center in Denver, Colorado.
    I am both a physician who treats Sjorgren's Syndrome 
patients and researches autoimmune disease. I am here today to 
provide the hard facts to you about Sjorgren's Syndrome.
    I have four key points to make.
    One: Auto-immunity where the body mixes antibodies against 
itself, is a huge problem, making up the third largest disease 
category in the U.S. Of those diseases, Sjorgren's is one of 
the most prevalent. Sjorgren's affects about four million 
Americans.
    Two: there are great opportunities in research for this 
disease.
    Three: in spite of the numbers and opportunities, 
Sjorgren's is often overlooked when it comes to research 
dollars.
    Four: finally, our requests for you today include the 
following.
    We ask that you give the NIH a 16.5 percent increase in 
funding to reach the goal of doubling the budget over the five 
year period ending in 2003. We ask that you ensure that the 
Auto-immune Disease Coordinating Committee at the NIH include 
Sjorgren's Syndrome as part of its strategic plan. We ask the 
two NIH Institutes NIAMS and NIAID take on a larger roll in 
many systemic aspects of this disease.
    Let us take a closer look for a minute at this disease 
process. Sjorgren's Syndrome is common, but I doubt most of you 
have heard of it. It is a disease that causes a great deal of 
frustration for many of my patients.
    I have a few treatments to offer, even though suffering and 
disability are tremendous and the potential complications are 
serious. Sjorgren's can affect any part of the body. It is 
known for causing dry eyes and mouth, but it can affect any 
other organ system.
    It can cause debilitating joint and muscle pain. Actually, 
someone with Sjorgren's also has a 44 times greater chance of 
developing a malignancy than someone in the general population. 
This link could be critical for future research into the 
transformation of cells from benign to malignant.
    Auto-immunity affects five percent of the general U.S. 
population. Sjorgren's Syndrome is one of the most prevalent, 
but comparatively, it gets fewer research dollars. Sjorgren's 
ranks either first or second in number of those suffering from 
auto-immune disease, but it ranks ninth in number of current 
extramural grants at NIH.
    I chair, on behalf of the Sjorgren's Syndrome Foundation, 
an international committee of scientists, which has just come 
to an agreement on criteria for Sjorgren's. We are working on 
initiatives to help move research Sjorgren's forward, but we 
need your help to move that effort to the next level that will 
reap useful treatments for patients who wait for relief.
    Sjorgren's has largely been covered at NIH by the dental 
and eye institutes. We are grateful for the work they have done 
and continue to do as a separate institutes. However, we would 
like to see NIAMS and NIAID take on a larger role in the many 
systemic aspects of this disease.
    We ask the subcommittee to ensure that these two key 
institutes recognize that research in Sjorgren's Syndrome is 
part of their mission, and should be included in their 
portfolio of grants. Thank you.
    Mr. Regula. Questions? Would this be classified as an 
orphan disease as testified by Mrs. Dorman.
    Dr. Kassan. I do not believe so.
    Mr. Regula. It seems to me that one of the tough problems 
here is diagnosis; is that correct?
    Ms. Vaughn. Yes, I was lucky. For most of our patients it 
is seven to ten years.
    Mr. Regula. Before they are diagnosed? I think the 
testimony on the Orphan Disease is that it one of the real 
problems to get them diagnosed.
    Dr. Kassan. The average time is about 6.3 years.
    Mr. Regula. Thank you very much for your testimony. Our 
next witness is Cornelia Catena, President and Chief Executive 
Officer of Amsterdam Memorial Health Care System.
                              ----------                              

                                         Wednesday, March 14, 2001.

                 AMSTERDAM MEMORIAL HEALTH CARE SYSTEM


                                WITNESS

CORNELIO CATENA, PRESIDENT AND CEO, AMSTERDAM MEMORIAL HEALTH CARE 
    SYSTEM
    Mr. Catena. Good morning, Chairman Regula and distinguished 
members of the subcommittee.
    I would like to introduce the two gentlemen seated next to 
me. To my right, is town supervisor, Tom Dimez, from the town 
of Amsterdam; and to my left, is the Mayor Duchessee of the 
City of Amsterdam.
    I have requested this opportunity to testify before the 
Labor/HHS Appropriations Subcommittee to discuss briefly the 
facility and renovation needs of Amsterdam Memorial Health Care 
System.
    Amsterdam Memorial is a rural health care entity consisting 
of a 76 bed medical/surgical hospital, 160 skilled nursing 
beds; four primary care centers including pediatrics, women's 
health and family medicine, as well as two adult day care 
programs. In addition, there is a rehabilitation component that 
include a 15-bed acute rehab unit.
    My reason for speaking with you here today is to express 
our need for direct funding for renovation and capital 
improvements. There are seven distinct projects that are being 
submitted for funding. Three of them include upgrades to the 
physical plan. These upgrades will correct life safety 
deficiencies.
    The three projects are as follows: Hospitals' original air 
conditioning system, original fire alarm system, and 
theoriginal emergency generators. These three systems are 40 years old 
and well beyond their useful life.
    The remaining projects involve replacing and upgrading 
mammography and ultrasound units, as well as replacing other 
medical equipment that is outdated. In the health care 
industry, technology changes at an alarming pace.
    Our current information technology system is limited. What 
was new and state of the art becomes obsolete quickly. As a 
community hospital, we have not been able to keep up with the 
pace of change.
    As legislators, you are keenly aware of the fact that 
health care is one of the most predominate concerns in our 
country. As a community hospital, we have sought to serve and 
provide first class care to our patient population.
    We were founded in 1888 to meet the needs of the under-
served, under-insured and indigent. For a number of years, we 
have specialized in elder care--we are the only hospital based 
nursing home in our region.
    The Wilkinson Skilled Nursing Facility is home to 160 
residents. The nursing home is at capacity with a waiting 
list--this is a testament to our commitment to the senior 
community.
    Despite revenue reductions, cutbacks in federal and state 
programs, and an aggressive managed care environment, Amsterdam 
Memorial continues to find new ways to meet the primary and 
secondary health needs of our Montgomery County community.
    However, we need help. We have needs that exceed $10 
million. Today, we request that this committee's support in the 
amount of $4 million.
    Amsterdam Memorial is a major employer in a depressed rural 
market. Our facility enhancement and renovation needs are long 
overdue. We recognize that the Government is not the total 
solution to our need, but you can be helpful in this regard.
    The hospital, along with the community, our mayor, our town 
supervisor, our health commissioner, state and Federal 
legislators are working aggressively to generate the needed 
funds.
    I have submitted for the record detailed information 
regarding our capital improvements and our budget. Thank you 
for your time. I am prepared to answer any questions that you 
may have.
    [The testimony follows:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
    Mr. Regula. Are you owned by the city?
    Mr. Catena. No, we are not a city-owned facility. We are a 
non-profit.
    Mr. Regula. You are a non-profit, private corporation?
    Ms. Catena. Yes, sir.
    Mr. Regula. Do you get state aid?
    Mr. Catena. No, we do not; other than Medicare and 
Medicaid.
    Mr. Regula. The city does not contribute either?
    Mr. Catena. No, sir.
    Mr. Regula. Basically, you rely on the receipts or the 
patient receipts, and your problem is capital.
    Mr. Catena. Correct, capital needs, yes, that is the 
challenge for us.
    Mr. Regula. Are there any other questions?
    [No response.]
    Mr. Regula. If not, thank you very much for coming.
    Mr. Catena. Thank you.
    Mr. Regula. Our next witness is Dr. Paul Berk, the Chairman 
of the American Liver Foundation.
    Dr. Berk?
                              ----------                              

                                         Wednesday, March 14, 2001.

                       AMERICAN LIVER FOUNDATION


                                WITNESS

DR. PAUL BERK, CHAIRMAN, AMERICAN LIVER FOUNDATION
    Dr. Berk. Mr. Chairman and members of the subcommittee, my 
name is Paul Berk. I am the Chairman of the American Liver 
Foundation.
    I am a physician and the Chief of the Division of Liver 
Diseases at the Mount Sinai School of Medicine in New York. We 
want to thank you for giving the American Liver Foundation the 
opportunity to present some testimony today.
    The American Liver Foundation or ALF is a national 
voluntary health organization dedicated to the prevention, 
treatment and cure of Hepatitis and other liver diseases 
through a combination of research education and advocacy. ALF 
has 30 chapters nationwide and provides information to more 
than 300,000 patients and their families annually.
    Mr. Chairman, ALF strongly supports the Congressional 
committee to doubling the NIH budget over a five year period. 
We would also like to thank this subcommittee specifically for 
providing important guidance in fiscal year 2001 to NIH, CDC, 
HRSA with report language important to the interests of ALF and 
the community that we serve.
    Today, I would like to speak briefly about four issues: NIH 
funding for Hepatitis C, pediatric liver disease, increasing 
liver and other organ donations, and the CDC's national 
Hepatitis C prevention strategy.
    Mr. Chairman, as you recall, in March of 1997, NIH convened 
the Hepatitis C Consensus Development Conference.Four years 
later, we find that the 1997 conference's findings, though extremely 
important, now outdated.
    We would therefore urge the committee to request NIH to 
convene a new Hepatitis C Consensus Development Conference in 
calendar year 2002, that would involve the broadest possible 
participation from the other institutes of the NIH, Veterans 
Health Administration, Centers for Disease Control and 
Prevention, Department of Defense and from the research and 
medical communities.
    While the treatment options identified at the 1997 
conference need to be updated, the need for additional research 
as previously recommended remains valid. We urge that an 
increase of $47 million be devoted to additional Hepatitis C 
research, consistent with those earlier recommendations. The 
final pages of my formal statement will outline some of the 
specifics of that research problem.
    Mr. Chairman, ALF has just published a pediatric liver 
research agenda, which documents the under-recognized impact of 
liver disease, as it affects the children. We will make a copy 
of this available to subcommittee staff.
    Liver disease negatively impacts the health of almost one 
out of every ten Americans, and it is particularly insidious 
when it afflicts children.
    To conquer pediatric liver disease, we recommend a 
collaborate network of 15 centers to improve clinical 
evaluation, diagnosis, and treatment of afflicted children.
    The establishment of these centers at fiscal year 2002 cost 
of $2 million was recently endorsed by the NIDDK advisory 
committee, and that was last month.
    Mr. Chairman, last year while about 4,700 liver transplants 
were performed in this country, there were almost 17,000 people 
on waiting lists and 1,750 people died on these waiting lists, 
waiting for a liver.
    In view of the continuing and even worsening shortage of 
donor liver and the growing number of transplants that are made 
possible by living donors, who agree to contribute to anywhere 
from 20 to 60 percent of their liver, we encourage the 
subcommittee to provide $2 million in fiscal year 2002 for the 
establishment of seven clinical centers, and a data 
coordinating center, to conduct the critical research necessary 
to facilitate an increase in living donor transplants.
    The research is needed to study outcomes in both donors and 
recipients, to define optimal surgical procedures and to 
identify better eligibility criteria. In addition to supporting 
NIH research in this area, the need to increase the rate of 
organ donation is critical.
    ALF recommends an increase in the funding level of $25 
million for the HRSA division of organ transplantation, with 
the increased funds being used for efforts to increase the rate 
of organ donation nationwide. Specifically, we would recommend 
an expansion of media advertising and best practices 
demonstrations to increase the number of donations.
    Support should also be provided, we would hope, to state 
motor vehicle departments for the establishment of donor 
registries.
    Finally, ALF supports a recent recommendation by CDC to 
increase its Hepatitis branch to division status, and supports 
an increase in the CDC budget for the funding of public health 
coordinators in all 50 states, plus a concentrated effort in 15 
large metropolitan areas for Hepatitis C education, screening, 
and diagnosis.
    Thank you for your attention and support. I will be happy 
to answer any questions that you may have.
    [The testimony follows:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
    Mr. Regula. Am I correct that the liver is one of the few 
organs that can regenerate itself?
    Dr. Berk. It can regenerate itself up to a certain point. 
When damage beyond the certain point, it no longer has that 
capability.
    Mr. Regula. But you can get donors who give a portion of 
their organ?
    Dr. Berk. Donors can give up to 60 percent of their liver. 
Then what follows, what happens thereafter, their liver returns 
to normal size after a period of time.
    Mr. Regula. And the donated portion will grow in the donee?
    Dr. Berk. Yes, exactly.
    Mr. Regula. Are there any questions?
    [No response.]
    Mr. Regula. Thank you very much for coming.
    Dr. Berk. Thank you.
    Mr. Regula. We have been joined by one of our new members 
Mr. Peterson. We are happy to have him as part of this 
committee, also.
    By the way, I did want to mention, on all of your 
testimony, the complete testimony will be made a part of the 
record. Unfortunately, we do not have the opportunity to hear 
it all. We will have it in the record and the staff will have 
an opportunity to peruse it.
    Our next witness is Joseph Stamm, President and Executive 
Director of the New York County Health Services Review 
Organization. We are happy to welcome you.
                              ----------                              

                                         Wednesday, March 14, 2001.

          NEW YORK COUNTY HEALTH SERVICES REVIEW ORGANIZATION


                                WITNESS

JOSEPH STAMM, PRESIDENT AND EXECUTIVE DIRECTOR
    Mr. Stamm. Mr. Chairman, on behalf of the New York County 
Heath Service Review Organization, NYCHSRO, I am pleased to 
present the following testimony to this subcommittee. 
Established in 1974, NYCHSRO was one of the first Federal 
professional standards review organizations.
    Over the past 27 years, the health care delivery system has 
gone through significant changes; but NYCHSRO has remained one 
of the premier review organizations in the country. Today, 
NYCHSRO is a designated PRO-like entity, and together with its 
subsidiary company, Med Review, Inc., has 250 full-time 
employees, reviewing millions of medical claims for public and 
private health insurance programs.
    Over the past 15 years, NYCHSRO has achieved savings of 
more than $500 million, on behalf of its public and private 
clients, which include labor unions, social service agencies in 
New York State and the City of New York.
    Our purpose in appearing again before this subcommittee is 
to once more urge you to get the Health Care Finance 
Administration to have non-PRO utilization review organizations 
perform additional auditing and recovery services on Medicare 
claims so that the Federal Government can benefit from 
utilization management programs that have proven so successful 
in the private sector.
    These problems have persisted for the past five years. The 
overwhelming majority, 92 percent, of the improper payments 
were detected through medical record reviews. When these claims 
were submitted for payments to Medicare contractors, they 
contained no visible errors.
    This past September, the GAO issued a report entitled, 
``Medicare-HCFA Could Do More to Identify and Collect 
Overpayments.'' This report speaks directly to the issues that 
we raised in last year's testimony.
    One of the reports primary recommendation is that Congress 
consider increasing HCFA's funding to bolster its post-payment 
review program. In making the recommendation, however, GAO 
notes that HCFA has very limited information available on how 
effective the contractors are in identifying Medicare over-
payments.
    With regard to in-patient initiatives, GAO notes that while 
it is a possibility, it is not clear how much of any post-
payment review is occurring and is related to inappropriate 
payments.
    GAO cites one PRO that indicated that while DRG validation 
was an area of emphasis for PROs in the 1980s and the early 
1990s, this activity was not a high priority in recent years 
for the PROs.
    When a PRO identifies what it believes is an inappropriate 
payment, the PRO is supposed to notify the appropriate physical 
intermediary, so that there can be further investigation.
    However, the report cites two Medicare contractors, who 
reported that they rarely, if ever, receive reports from the 
PROs on overpayment, that the PROs have identified.
    There is no question, Mr. Chairman, that Medicare carriers 
and intermediaries should be required to pay for all medically-
necessary covered health services in a timely fashion. However, 
Medicare should not pay for services that are not medically 
necessary, not documented, miscoded, or not covered by the 
program.
    Mr. Chairman, according to both the General Accounting 
Office and the Inspector General's Offices, billions of 
Medicare dollars are wasted every year on health services that 
are simply not needed or inappropriate for the underlining 
medical problem or complaint.
    These are dollars that could be made available for 
prescription drug programs, higher payments to providers for 
appropriate services, or expanded services to individual who 
are otherwise without health insurance.
    Unfortunately, Medicare has yet to undertake the more labor 
incentive, but highly productive, types of reviews conducted by 
organizations like NYCHSRO. What is particularly distressing is 
that we can conduct Medicare reviews in such a way that there 
would be no cost to the taxpayer for this service.
    Because this service is a post-payment review, Medicare has 
already paid the claim. Companies such as NYCHSRO would seek to 
recover inappropriate payments.
    We propose that the subcommittee include in their fiscal 
year 2002 Labor HHS Appropriations Bill language that would 
direct HCFA to conduct a demonstration project to assess the 
feasibility of: one, utilizing a non-PRO, commercially 
available claims auditing firm for the review of Medicare 
claims; two, performing chart reviews manually by clinical 
personnel; and three, reimbursing the review activity at a 
fixed rate, which assures, at a minimum, a one-to-one cost 
benefits ratio, and a cost neutral impact on the Medicare 
budget.
    The demonstration project should be tested in New York 
City, as well as in other large Medicare markets with diverse 
groups of providers, including both community and major 
teaching hospitals.
    Finally, implementation of this project should be 
undertaken in such a way to make the program easily 
implementable nationally, in the event that the results of the 
project can prove successful.
    Mr. Chairman, NYCHSRO is testifying today, not because we 
are the only company performing this type of service, but we do 
believe we are one of the best. As you consider ways to improve 
the Medicare Program, and more importantly, how to pay for some 
of those improvements, eliminating inappropriatepayments, such 
as those outlined in NYCHSRO's testimony is a reasonable answer.
    Your consideration of this recommended proposal is greatly 
appreciated. I would be happy to answer any questions that you 
may have. Thank you.
    [The testimony follows:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
    Mr. Regula. I think what you are proposing would be an 
entirely new function, to be contracted with by private groups 
with HCFA; is that correct?
    Mr. Stamm. Correct; right now, the pros are in all of the 
states there are doing the review.
    Mr. Regula. That is where it stops; they do the review?
    Mr. Stamm. Right.
    Mr. Regula. Are there any other questions?
    [No response.]
    Mr. Regula. Thank you very much.
    Our next witness is Jon Grove, the Legislative Chair of the 
National Labor Relations Board Union.
    Mr. Grove.
                              ----------                              

                                         Wednesday, March 14, 2001.

                     NATIONAL LABOR RELATIONS BOARD


                                WITNESS

JON H. GROVE, LEGISLATIVE CHAIR, NATIONAL LABOR RELATIONS BOARD UNION
    Mr. Grove. Good morning. I am a field examiner at the 
Board's Regional Office in Cincinnati, and also the Legislative 
Chair of the National Labor Relations Board Union.
    The NLRB union represents approximately over 1,200 field 
attorneys, field examiners, and support staff in 51 
metropolitan areas, throughout the Nation, and support staff 
employees here in Washington, D.C. The NLRB Union is 
independent and not affiliated with any other labor 
organization.
    [The testimony follows:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
    Mr. Jackson will introduce our next witness, Dr. Rodney 
Hood, the President of the National Medical Association.
    Mr. Jackson.
    Mr. Jackson. Thank you, Mr. Chairman.
    On August 16th, 2000, Dr. Hood was installed as the 101st 
President of the National Medical Association. At his 
installation, he vowed to focus his administration on the 
impact of race and racism on the health status of African 
Americans and the elimination of health disparities. He serves 
on the surgeon general's new national steering committee to 
eliminate racial and ethnic health disparities.
    Dr. Hood has been in private medical practice for more than 
20 years. He is the managing partner of Care View Medical Group 
in San Diego, the co-founder and President of a 300 physician 
independent physician association, theMulti-Cultural Primary 
Physician Medical Group, and founder of Comp Care, a Medicate Health 
Plan, with some 7,000 enrollees and over $2 million in annual revenues.
    Dr. Hood was born and raised in Boston, Massachusetts, 
where he graduated with honors from Northeastern Universities 
School of Pharmacy. In 1973, he became one of the first African 
Americans to graduate from the University of California, San 
Diego Medical School. He went on to complete post-graduate 
medical training and become board certified in internal 
medicine.
    In 1976, he was the first African American, post graduate, 
to complete a residency in internal medicine at the UCSD 
Medical Center.
    In 1991, he was honored for establishing the San Diego NMA 
Chapter, and the Mickey Leland Scholarship Fund, which has 
donated over $40,000 to minority medical students.
    Dr. Hood is also the recipient of the NAACP San Diego 
Chapter's distinguished Medical Service Award. He was recently 
appointed to the Advisory Panel of the American Legacy 
Foundation, which was created through the recent Master 
Settlement Agreement between 46 State Attorneys General and the 
major tobacco companies.
    Active in several medical organizations, the American 
Medical Association, the California Medical Association, the 
San Diego Medical Society, he has reserved his most dedicated 
efforts to the National Medication Association, the 
professional and scientific organization that today represents 
more than 25,000 African American physicians and the patients 
that they serve.
    In his home state of California, he has presided over the 
San Diego Chapter of NMA and the statewide affiliate, Golden 
State Medical Association. Nationally, Dr. Hood has held 
several leadership posts within NMA, including Chairman of the 
Board in 1998.
    Mr. Chairman, I am greatly honored to introduce and present 
Dr. Hood to our committee. As you know, just this past year, we 
celebrated the passage of S.1880, the Minority Health 
Disparities Bill, for which a number of our colleagues on both 
sides of the aisle were very instrumental; but none other than 
Dr. Hood, who provided a numerous amount of professional 
testimony, made that legislation possible, and urged its 
necessity.
    Mr. Chairman, Dr. Hood.
                                         Wednesday, March 14, 2001.

                      NATIONAL MEDICAL ASSOCIATION


                                WITNESS

DR. RODNEY G. HOOD, PRESIDENT, NATIONAL MEDICAL ASSOCIATION
    Dr. Hood. Thank you, Congressman Jackson, for that 
wonderful introduction.
    Mr. Chairman, I would like to take this moment to thank you 
for taking time out of your busy schedule this past Monday, to 
address the leadership of the National Medical Association that 
was held this past Monday at Capitol Hill. We enjoyed having 
you join us, and appreciate the time that you have taken.
    I also want to congratulate you on your recent appointment 
to the Chairmanship of this most important committee. NMA looks 
forward to working with you during this appropriation cycle. I 
am very pleased to have the opportunity to present the National 
Medical Association's fiscal year 2002 appropriations priority 
recommendations before this committee.
    The National Medical Association was established in 1895 
and, as you heard, represents over 26,000 physicians of African 
descent. We have over 100 state and local societies.
    As such, the NMA has been committed to improving the health 
status and health outcomes of minorities and disadvantaged 
people for more than 105 years.
    While the association has focused primarily on health 
issues related to African Americans in medically under-served 
populations, the principles, goals, and initiatives of the NMA 
benefit all people.
    In order to understand the critical need to provide 
increased Federal funding for programs established to address 
the health status of African Americans and other medically 
under-served populations, it is important to know that 
centuries of discrimination against African Americans have left 
us with a complicated legacy of poor health, illness, disease, 
and death, that are widespread and pervasive.
    The programs supported by this subcommittee are critical to 
elimination of health disparities. NMA looks forward to working 
closely with the subcommittee and relevant Federal agencies to 
ensure that the tremendous advantages made through bio-medical 
research, health professions training, and community-based 
public health and disease control are equally available to all 
Americans, particularly those who have not fully benefitted 
from these advantages.
    Recently, the NMA joined the Office of the U.S. Surgeon 
General and the American Public Health Association in 
partnership with the Nation's leading health providers and 
business leaders to issue a call to the nation to eliminate all 
racial and ethnic health disparities.
    In response to this challenge, the NMA urged Congress to 
provide $1 million to support the development and 
implementation of a health policy and research institute that 
will aggressively focus on achieving health parity for 
Americans.
    Why; the NMA is concerned that historic and current data 
points to a modern day health care ratio profiling. This racial 
profiling must be addressed, if we are ever to achieve parity 
in health care.
    Recent studies are confirming what minority physicians and 
practitioners have known for many years, particularly African 
Americans. That is that there is significant disparities and 
quality of health care provided to minority patients across 
this nation. This statement is well documented in a book 
recently published by Professor Michael Bird and Linda Clayton, 
``The American Health Dilemma,'' and as well, in a recently 
produced document by the NMA consensus paper put together by a 
panel of distinguished experts in African American health 
titled, ``Racism in Medicine.''
    In addition, there are disparities in training and 
professional advancement opportunities for minority medical 
students and professors of medicine, and opportunities for 
equity participation, and minority physicians in managed care 
systems.
    We strongly believe that without achieving parity and 
health status experienced by African Americans, who are plagued 
by disproportionate rates of diseases, morbidity and mortality, 
the goals of the U.S. Surgeon General, Healthy People 2010 
Initiative will remain unattainable.
    Mr. Chairman, not only do the African Americans experience 
disparities in quality of health care services they service, 
but it is a well documented fact that African Americans and 
other minorities suffer with a health status that is vastly 
more desperate than their white counterparts.
    This serious problem threatens to increase in complexity, 
as the nation, with its growing minority population proceeds 
through the 21st century. The long-term prognosis for the 
elimination of health disparities among minorities is largely 
dependent upon a strong Federal commitment to biomedical 
research and training.
    NMA is pleased that Congress supported the elevation of the 
Office of Research in Minority Health of NIH to a center 
status. We are also pleased with Congressman Jesse Jackson, and 
would like to thank him for his leadership in this achievement.
    The Center on Minority Health and Health Disparities will 
enable NIH to ensure that research targeted towards minorities 
is carefully and strategically coordinated across institutes, 
and provides increased support for important minority-focused 
biomedical research.
    Currently funded at an estimated $130 million for this 
center, more than $90 million of the center's budget is 
identified to support specific longitudinal efforts. This 
provides very little latitude with which the center can 
sufficiently support new or expanded functions such as research 
endowment, centers of excellence, and loan repayment programs, 
as well as the broadened populations that it serves.
    The NMA strongly supports providing adequate funding for 
the Office of Minority Health to ensure continued support for 
the office's current programs, as well as to provide support to 
expand the efforts of that critical office.
    Mr. Chairman, the NMA would like to thank the committee for 
commissioning the Institute of Medicine Study on ethic bias and 
medicine during the 106th Congress. This study will help to 
provide a clear understanding of the extent to which ethic bias 
is ingrained in the practice of medicine, and the education of 
health professionals and students.
    Such knowledge is absolutely essential to the efforts to 
eliminate the disparities by 2010. We recommend the 
subcommittee request that the Institute of Medicine report back 
to this committee regarding the finds and recommendations of 
this study.
    We would like to thank this committee for allowing the NMA 
to highlight its concerns, the NMA's key funding 
recommendations for fiscal year 2002.
    I ask that my written statement, which is more 
comprehensive be included in the hearing record.
    Mr. Regula. Without objection, all the statements will be 
included.
    Dr. Hood. Thank you.
    [The testimony follows:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
    Mr. Regula. I had a question. Do your members have any 
problem getting access to hospitals across the country, so they 
can take their patients there, and practice in the hospitals?
    Dr. Hood. I have been President for six years. I have been 
part of the National Medical Association for about 20 years. I 
would say that we get a half a dozen complaints, as a 
President, from various members, who do not necessarily have 
problems having access to the hospitals. However, once they are 
on the staffs, there are many complaints about the fairness of 
how they are treated, once they are on the staff, as far the 
credentialling, and as far as the oversight.
    So there are still some problems with access, about the 
fairness of the process.
    Mr. Regula. Are there any other questions?
    Mr. Hoyer. Dr. Hood, I just want to welcome you to the 
committee.
    I do not know whether you had the opportunity to testify, 
when we had an extraordinary member of Congress who was ranked 
ahead of me on this committee, a senior member of the 
committee, Congressman Lewis Stokes, who continued to focus the 
attention of the committee on the problems that you have 
raised; and particularly with reference to the cohorts of 
extramural and intermural research studies, where we vastly 
under-included minorities and women in our cohorts, giving 
usperhaps significantly skewed results.
    I think the focus that you and NMA bring to this matter are 
very important, and I thank you for your testimony.
    Dr. Hood. Thank you very much. I should also like to state 
that the Honorable Lewis Stokes is part of the NMA Commission 
that has been put together to address this issue. Thank you.
    Mr. Regula. Thank you for coming.
    I am going to defer reluctantly to my colleague, Mr. Hoyer, 
to introduce our next guest.
    Mr. Hoyer. I know, Mr. Chairman, that you would be 
enthusiastic to do the same thing.
    Mr. Regula. Absolutely.
    Mr. Hoyer. I think, in a bipartisan fashion, we have the 
opportunity now to hear from one of our fellow citizens, that 
he and his wife have contributed as much to progress in this 
country as any of us.
    Senator Dale Bumpers, of course, is the former Governor of 
Arkansas, has served in the United States Senate with great 
distinction for two few years, and we wish that he were still 
within our midst.
    But he continues, as does his wife, to perform public 
service, to focus on the welfare of the citizens of our 
country, and to bring his considerable talent and intellect to 
bear on issues of great importance to our country and to the 
citizens that we are all serving. It is an honor to have him 
before the committee. It was an honor to serve with him. It is 
an honor, and I am proud to say that he is a good friend.
    I know, Mr. Chairman, you share that view, because he has 
worked with us in a bi-partisan way, on behalf of this country.
    Mr. Regula. Well, we are happy to welcome Governor and 
Senator Bumpers, a great American.
                              ----------                              

                                         Wednesday, March 14, 2001.

                         RESEARCH TO PREVENTION


                                WITNESS

HON. DALE BUMPERS, FORMER SENATOR FROM ARKANSAS
    Mr. Bumpers. Thank you very much, Mr. Chairman; and 
Congressman Hoyer, let me thank you most profoundly for your 
very kind and overly generous remarks, all of which are true 
and more. [Laughter.]
    Mr. Regula. Do you want to yield the additional time, 
Senator? I see you have not changed since you left the Senate. 
[Laughter.]
    Mr. Bumpers. Well, Mr. Chairman, as I walked in this room 
and saw you presiding over this committee, all I could think of 
was what a very short period of time ago it seemed, that you 
were a freshman in the House, I was a freshman in the Senate, 
and we boarded one of those taxpayer rip-offs out at Andrews 
Air Force Base.
    After 24 years, I can truthfully say, that was the most 
memorable and the most edifying trip that I ever took. One of 
the reasons was because Betty and I enjoyed yours and Mary's 
company during the trip, and we have been close friends ever 
since. I value your friendship.
    To the members of the committee, let me thank all of you 
very much for allowing me to come here and make these few brief 
remarks regarding an organization which you may not be familiar 
with.
    I am here in my capacity as Honorary Co-Chair of a 
coalition called Research to Prevention, designed to stress the 
importance of chronic disease funding at the Centers for 
Disease Control and Prevention.
    Research to Prevention is a coalition whose membership 
includes some of the nation's leading voluntary health 
associations, such as the American Cancer Association Society, 
the American Diabetes Association, the American Heart 
Association, the Arthritis Foundation, the Epilepsy Foundation, 
Prevent Blindness America, and as of yesterday, the American 
Dental Association.
    The law firm with which I am affiliated represents this 
coalition. My work has been and will continue to be pro bono.
    The focus of research prevention is to raise awareness 
levels among members of Congress, in particular, and the 
public, in general, to the fact that chronic diseases have 
become epidemic. Moreover, with the highly successful efforts 
to double funding for the National Institutes of Health, a 
program which I vigorously supported when I was in the Senate, 
there is a strong need to ensure that adequate funds are made 
available in order to intervene in chronic diseases, at the 
earliest possible time.
    Better still is the prevention of prevalent, costly and 
chronic disease. Chronic diseases are responsible for more than 
70 percent of all deaths, and more than 70 percent ofall health 
care expenditures in the United States.
    Recent studies by Johns Hopkins and the Robert Wood Johnson 
Foundation tell us that 125 million Americans live with some 
form of chronic disease; the most costly and preventable of all 
health problems.
    By the year 2020, a short 19 years away, chronic disease 
expenditures will reach $1 trillion, or 80 percent of all 
health care costs. Yet, as a nation, we invest only $1.25 per 
person annually, attempting to present these leading killers.
    The states lack the money to combat these leading killers. 
While states have minimal funding to attack several of these 
conditions, to date, only four states have comprehensive 
cardiovascular disease programs to prevent and control heart 
disease and stroke, the leading killer of Americans.
    No state has a comprehensive arthritis program, a 
comprehensive physical activity and nutrition program to 
prevent obesity, or a comprehensive colon rectal program. Only 
16 states have comprehensive diabetes programs.
    Mr. Chairman, if I may digress at this moment, I went to a 
big dinner, sponsored by the National Foundation for Infectious 
Diseases last evening. They were honoring one of my former 
colleagues, Senator Jay Rockefeller.
    Preceding the dinner, I was visiting with some of the top 
medical people in the United States, some from CDC, some from 
NIH. I told them an interesting story that when I got 
associated with this organization, I found that 960,000 people 
a year die of cardiovascular disease, and about half of those 
are women.
    It is an interesting thing, 500,000 women a year die of 
breast cancer. Now do not misunderstand me. I am hot for it. I 
voted for every appropriation I ever could, to prevent and to 
treat breast cancer.
    But it is really a staggering statistic, when you think 
about it. This program is really sort of starving. Yet, almost 
ten times as many women die every year from cardiovascular 
disease, than from breast cancer.
    In my home state of Arkansas, there has been minimal 
funding to address cardiovascular disease and diabetes. It has 
no program funding to address arthritis, obesity, or colon 
rectal cancer.
    Every member of this subcommittee should be actively aware 
of the limited resources currently available to the states to 
address these leading killers.
    Mr. Bumpers. Resources granted to the state health 
departments for chronic disease prevention control can help us, 
one, diagnose disease earlier, saving lives and curbing costs; 
two, diminish pain and suffering and reduce the number of 
hospital visits; three, prevent the devastating secondary 
complications, including blindness, paralysis and limb loss; 
and last, empower Americans with the opportunity to live 
longer, healthier lives.
    On behalf of Research to Prevention, Mr. Chairman, I 
strongly urge the committee to help make it possible for every 
state in the nation to deliver programs to address chronic 
diseases and disability by committing a minimum increase of 
$350 million for these programs.
    That is, admittedly, a whopping 40 percent increase. But I 
must say, and I hope this is not true, that the 
Administration's budget actually proposes a cut in this budget.
    This $350 million increase will allow CDC to enhance its 
efforts with states to effectively address these leading 
killers and causes of disability.
    Some examples are, it would enable 35 states to launch or 
expand their cardiovascular disease programs. It would provide 
all 50 states with comprehensive diabetes control programs. It 
would enable 16 states to launch comprehensive cancer control 
programs.
    For the first time, it would begin to fund comprehensive 
arthritis programs in the states. It will also establish model 
epilepsy demonstration programs, a disease which caused my own 
nephew to commit suicide.
    I want to thank the committee for its consideration of this 
important request. I want to thank you, again, Mr Chairman, for 
allowing me this time this morning.
    [The testimony follows:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
    Mr. Regula. Well, thank you, Senator.
    I think the emphasis on prevention is very well placed. I 
am just curious, do you think it would be wise or a good policy 
to make more screening on various things available under 
Medicare reimbursement, to encourage elderly people to be 
screened? Of course, now they can get flu shots, and I think 
they can get some screening on breast cancer. Should we expand 
it to emphasize prevention?
    Mr. Bumpers. I would be for anything like that, Mr. 
Chairman. That is an actual way to put it, too. I mean, 
sometimes it is staggering, is it not, our priorities, and how 
we spend our money.
    Here is a staggering problem in this country, which causes 
more dislocation, more job loss, more human misery than almost 
anything. Yet, really, the amount of money that we put into it 
is just nothing, $1.25 a year.
    Mr. Regula. Particularly, if the seniors had screening 
available for various medical problems, if it were Medicare 
reimbursed, they would be more likely to do it.
    Mr. Bumpers. There is no doubt about it.
    Mr. Regula. I sponsored the Flu Shot Program, and it has 
been very successful in getting the seniors to get the flu 
shots.
    Mr. Bumpers. I appreciate your bringing that up, Mr. 
Chairman. You could not be more right.
    Mr. Regula. Are there any other questions?
    Yes, Mr. Peterson?
    Mr. Peterson. Senator Bumpers, I guess I am very interested 
in this prevention issue, because I think it is the untapped 
resource in America.
    I guess my concern is, since we lost C. Everett Koop, who I 
think is a voice that Americans listened to, and I know, even 
as a State Senator, he inspired me to do things in Government. 
He was on national television all the time, and I do not talk 
to many people who do not know who he is.
    But it seems like that has been a silent voice in recent 
years. Most Americans do not know who the Surgeon General is, 
and they have not had the same voice that he carried. Do we not 
need to revitalize that voice? I do not know what happened. I 
do not know whether they are under-funded, or whether they have 
changed their profile; but most Americans do not hear regularly 
from their Surgeon General, who I think played a vital role in 
encouraging Americans to live healthier life styles.
    Mr. Bumpers. Well, I think your point is well taken. Of 
course, Dr. Koop is a classic case of a Surgeon General who had 
a high profile. He had a very dramatic affect in this country 
on health care, and especially the damages being caused by 
tobacco. He was the first Surgeon General who ever brought that 
up, but he put it on the front burner.
    That shows you what a high profile Surgeon General can do. 
Of course, Dr. Satcher was also a rather high profile Surgeon 
General. I think it is a very important position, and it ought 
be used as a ``bully pulpit.''
    Mr. Peterson. Thank you
    Mr. Regula. Are there any other questions?
    [No response.]
    Mr. Regula. Well, thank you again, and it was nice to see 
you.
    Mr. Bumpers. Thank you all.
    Mr. Regula. Is Betty still pursuing peace links?
    Mr. Bumpers. During what time she is not immunizing 
children. [Laughter.]
    Mr. Hoyer. Mr. Chairman.
    Mr. Regula. You may ask the Senator one more question.
    Mr. Hoyer. The Senator has been very involved with Betty on 
the immunization issue, Mr. Chairman. That is something that we 
are making real progress on. She has been terrific on that.
    This committee, as you know, committed more funds to it, 
but we still have a far way to go. I am glad that you brought 
it up sort of tangentially. She has done great work on that.
    Mr. Bumpers. Congressman Hoyer, it came up last night at 
this dinner, and this is something that I probably should not 
bring up, because I am not sure that I fully understood it, but 
it was essentially the new vaccine research center out there, 
which was justifiably named, the ``Dale and Betty Bumpers 
Vaccine Research Center.'' Have you seen the stories about e-
boli?
    Mr. Regula. Yes.
    Mr. Bumpers. That is coming out of that vaccine research 
center. That really is a magnificent thought.
    Mr. Regula. Well, Betty has done extraordinary work, and 
that is a very important testimony to her work, and what she 
has done for millions of others, not just in this country, but 
around the world. Thank you.
    Mr. Bumpers. I do not say this to be magnanimous, but the 
truth of the matter is, my name did not need to be on that 
building. She is the one who lived the charge through the years 
on that.
    From the day that I took the Governor's Office, she started 
looking for something that she could use, being First Lady of 
the State, in a very effective way. That is the way she got 
into immunizations, and has been in it, ever since.
    Mr. Regula. She is a great partner.
    Mr. Bumpers. Thank you.
    Mr. Regula. You are a great team.
    Our next witness, Millicent Gorham, will be introduced by 
Mr. Jackson.
    Mr. Jackson. Mr. Chairman, appointed in October, 1995, 
Millicent Gorham is the Executive Director of the National 
Black Nurses Association, which represents 150,000 African 
American nurses in the United States.
    She serves on the U.S. Food and Drug Administration's 
Consumer Consortium, which recommends consumers to the FDA's 46 
advisory committees. Millicent is on the Editorial Board of the 
Nursing Spectrum, a national nursing machine, and the Urban 
Health Magazine. In 1996, Bethune Cookman College Department of 
Nursing honored Millicent with its achievement award.
    For four years, she has worked as the Health Legislative 
Assistant to U.S. Representative Lewis Stokes. She also served 
as the coordinator of the Congressional Black Caucus Health 
Brain Trust, and is serving on the steering committee of the 
CBC Health Brain Trust.
    She has served as the Assistant Director of Government 
Relations for the American Optometric Association for eight 
years, and for four years, Millicent worked as the Director of 
Government Relations for the National Rural Health Association.
    Millicent currently serves on the Board of Directors of the 
AIDS Action Counsel and the Fishing School, a Washington, D.C.-
based after school program for children.
    Millicent received a Masters in Business Administration 
from Howard University, and a B.A. in Business Management and 
Communications from Simmons College in Boston.
    She also received a Certification of Completion from the 
Institutes of Organization Management of the Chamber of 
Commerce of the United.
    Mr. Chairman, I present to the Committee, Millicent Gorman.
                              ----------                              

                                         Wednesday, March 14, 2001.

                   NATIONAL BLACK NURSES ASSOCIATION


                                WITNESS

MILLICENT GORHAM, EXECUTIVE DIRECTOR, NATIONAL BLACK NURSES ASSOCIATION
    Ms. Gorman. Thank you for that introduction, Mr. Jackson.
    Mr. Chairman, in 10 to 15 years, a Washington Post headline 
may likely read, ``No nurses, no beds, hospitals turn away 
patients.''
    The National Black Nurses Association believes that without 
an adequate number of nurses who provide culturally competent 
health care services, the health care disparities gap will 
increase.
    Crisis 2000 National Sample Survey of registered nurses 
details the inadequate supply of registered nurses; the growing 
demand for nursing services; the inadequate level of 
preparation of nurses to close the gap in health disparities; 
and the paucity of research data that provides conclusive 
evidence on the number of nurses needed to provide safe nursing 
care.
    To help increase the supply of registered nurses, NBNA 
recommends $140 million for the Title 8 Nurse Education Act. 
NBNA recommends expanding Title 8 funding for nursing education 
targeted to increase the number of minority registered nurses, 
prepared at the Baccalaureate Level, and the Advanced Practice 
Degree Level.
    Increased funding is needed for scholarships, grants, and 
loans for nursing students. Funding for faculty development and 
recruitment is essential. Funding to increase the number of 
faculty and the education preparation of faculty at the 
Doctoral level is crucial.
    Critical nurse faculty shortages will impact our ability to 
increase the number of nurses entering into the profession. 
Further, funding is needed to establish a national nurse 
service corps, similar to the national health service corps to 
include generic BSN students.
    Senior nursing students need to receive clinical training, 
not only in health professions' shortage areas, but also in 
community-based health care environments.
    Increased funding is needed to establish a qualified cadre 
of nurse researchers, who can address the health care issues 
that disproportionately affect African Americans; like 
cardiovascular disease, cancer, diabetes, HIV AIDS, mental 
health, pain management, and a variety of women's health 
issues.
    NBNA recommends $145 million for the National Institute of 
Nursing Research. The NBNA strongly urges the NINR to increase 
funding to establish an effective recruitment and retention 
strategy to increase the number of women from diverse cultures 
to be included in NIH sponsored-clinical trials.
    Funding is needed for NINR to develop a public partnership 
to support an integrated, comprehensive research agenda that 
will impact the health of African Americans. Increase funding 
will support nurse research on the cost effectiveness of 
different nursing practices on patient outcomes.
    These research initiatives will translate research into 
practice to improve nursing care management within diverse 
settings, for diverse populations, and ultimately end the 
disparities for African Americans.
    NBNA recommends $200 million for the Center for Minority 
Health and Health Disparities at NIH. NBNA recommends increased 
funding for training of Masters, Doctoral, and Post-Doctoral 
prepared health care providers at NIH. The Center will need 
increased funding for more ethnic minority clinical 
investigators to conduct research with minority subjects.
    NBNA supports a collaborative arrangement between the 
center and the NINR to ensure that more nurses are a part of 
the clinical trials team.
    NBNA recommends $65 million for the Office of Minority 
Health. Increased funding is needed for demonstration programs 
and research for the development of cultural competency in 
nursing care delivery.
    Increased support is needed to collect and analyze the 
report data on community-based health care screening programs, 
conducted by National African American organizations, like the 
National Black Nurses Association. The data should include 
information that will allow us design more effective health 
promotions and disease prevention programs to close the health 
care disparities gap.
    Thank you, Mr. Chairman.
    [The testimony follows:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
    Mr. Regula. Thank you; are there any questions?
    [No response.]
    Mr. Regula. Are the number of African American nurses 
growing? Because there seems to be a shortage of nurses, 
generally, and I am just wondering if there are more and more 
entering the profession.
    Ms. Gorham. No, sir, the African American nurses are not 
growing, and primarily the reason is funding. We need to make 
sure that there is an appropriate level of scholarships and 
grants available to those nurses, so they can enter into the 
profession, and continue on to get that Bachelor's Degree, and 
hopefully go on to give a Masters and Doctoral Degree.
    Mr. Regula. So you say it is inadequate funding in getting 
education money to go to school.
    Ms. Gorham. That is correct, and the money from the 
Division of Nursing in Title 8, through their scholarship and 
loans program, would most definitely help to increase the 
number of all minorities.
    Mr. Regula. So that is the one that we should try to beef 
up, to get more people in the profession.
    Ms. Gorham. Yes, sir, we certainly would appreciate it, and 
I think down the road, sir, that as the baby boomers head into 
that older cycle, we are going to need more nurses.
    Mr. Regula. I agree with you. Thank you very much.
    Our next witness is Frank Somma, National President, 
Cooley's Anemia Foundation. He is accompanied by his daughter, 
Alicia.
                              ----------                              

                                         Wednesday, March 14, 2001.

                            COOLEY'S ANEMIA


                                WITNESS

FRANK SOMMA, NATIONAL PRESIDENT, COOLEY'S ANEMIA FOUNDATION, INC., 
    ALICIA SOMMA
    Mr. Somma. Good morning, Mr. Chairman. My name is Frank 
Somma. I am the National President of the Cooley's Anemia 
Foundation. I am very proud to be here this morning with my 
daughter, Alicia, who will be delivering most of our testimony.
    The legislative program of Cooley's Anemia Foundation is 
laid out in detail in our written testimony. It includes 
support for the CDC blood safety efforts, research support for 
NHLBI and NIDDK, and direction to the Maternal and Child Health 
Bureau to fund the programs needed by our patients.
    What I cannot tell you about is what it is like to be a 
person who lives with Thalassemia or Cooley's Anemia. Alicia, 
however, can tell you that very well.
    Ms. Somma. Good morning, Mr. Chairman, my name is Alicia 
Somma. I am 15 years old, and I have Thalassemia, which is a 
genetic blood disease that results in failure to produce 
sufficient hemoglobin, the oxygen-carrying component of the 
blood. I have lived with this disease since birth, and was 
diagnosed at eight months.
    In order to survive, I am transfused with red blood cells, 
every 14 days. Some are painful and unpleasant, but I do it, 
because it saves my life.
    However, in addition to saving my life, it also threatens 
my life. Being transfused so regularly results in a build-up of 
iron from the transfused blood, particularly in the liver and 
the heart. The body has no natural way to remove the iron; but 
if it is left undisturbed, it would be fatal.
    To remove it, I am infused with a drug every single night 
for 10 to 12 hours. I place a needle in my stomach, and the 
drug, Desferal, is pumped into my body. With the use of 
Desferal, patients' lifespans have increased into their 30s and 
even 40s. It is not a perfect treatment, but it is the only one 
we have, for now.
    With the longer lifespan comes other complications, 
including diabetes, osteoporosis, and endocrine dysfunction. 
With the history of transfusions comes HIV/AIDS and Hepatitis 
C. As you can see, this is not an easy disease, and there is no 
cure.
    As my father said, the Cooley's Anemia Foundation has a 
comprehensive legislative program, outlined in our written 
testimony. Just to focus on one aspect of it, nothing is more 
important than a safe blood supply.
    Some of my fellow patients have died of AIDS or Hepatitis. 
While those have been removed as a threat, new viruses invade 
the blood supply regularly. The CDC is willing and even anxious 
to work with us to develop a blood safety program for 
Thalassemia patients. They have such a program for Hemophilia, 
but not for the red blood cells that patients like me receive.
    Because we are the largest consumers of red blood cells, 
whatever infects the blood supply hits us first. All CDC is 
lacking is the money and direction from this subcommittee to 
implement such a program. They say they can do it for $2.5 
million. While that sounds like a lot to a 15 year old, 
everyone tells me that it is a very small amount for this 
subcommittee. [Laughter.]
    Too many of my friends have become ill from bad blood for 
me not to ask you to do this. Mr. Chairman, your support for 
this funding will help other kids like me to thrive and live 
healthier and more productive lives.
    Thank you.
    Mr. Somma. As you can imagine, Mr. Chairman, I am awfully 
proud of Lisa. She is as brave as anyone that I have ever met.
    I am also proud of the many other young people like Alicia 
that I get to meet as the National President of Cooley's Anemia 
Foundation. They deal with one of the most burdensome diseases 
imaginable with courage, grace and dignity. As a society, there 
is little more we can do that is more important than this.
    We thank you for your kind attention, Mr. Chairman, and we 
would be pleased to answer any questions that you might have.
    [The testimony follows:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
    Mr. Regula. How many people are afflicted with this? Since 
you are the National Chairman, you probably have some knowledge 
of that.
    Mr. Somma. Sure, well, the uncertainty of it is, we know 
that there are thousands; but the difficult issue for us, or 
one of them, is finding some of the patients. We are losing so 
many infants, especially.
    We have had a large influx of Asian immigration, and we are 
discovering that this disease, which primarily affects people 
that were originally from that whole Malaysia group, from 
Europe, and Greece and into Asia, and we have so many 
undiagnosed cases, and children needlessly dying without ever 
knowing why, like it was for some of the European immigrants, 
40 years ago.
    Mr. Regula. So you were fortunate in getting an early 
diagnosis?
    Mr. Somma. Yes, we were. The result is death; if you are 
not diagnosed at eight or nine months old, you will not live to 
a year.
    Mr. Regula. Do you have a problem getting blood? You 
mentioned blood supply. I think there is generally, nationally, 
a growing shortage of blood. Has this been a problem for you, 
Alicia?
    Ms. Somma. It has not personally been a problem to receive 
blood. But like I said, with the blood that we get, there is 
always the fear of being contaminated. Like I said, HIV/AIDS is 
not a threat anymore, and Hepatitis C is no longer a threat. 
Also, new diseases invade the blood supply every day.
    Mr. Regula. And the procedure that you mentioned that is to 
remove the iron, you leave a needle in at night; is that 
correct?
    Ms. Somma. Correct.
    Mr. Regula. Are there any questions?
    Mr. Jackson. I have one, Mr. Chairman.
    Mr. Regula. Yes, Mr. Jackson?
    Mr. Jackson. I guess this is for your father, Alicia. The 
$2.5 million, I gather in your conversations with CDC, they 
indicated that was sufficient to create a screening process for 
the red blood?
    Mr. Somma. Well, I think it is a beginning. I cannot say 
for sure that that is all that all encompassing. I would have 
to ask you to refer to the written testimony, which I do not 
have in front of me here.
    Mr. Jackson. Can you share with us some of your 
conversations with the CDC about what the $2.5 million will 
render for your daughter's life and for other lives?
    Mr. Somma. I can absolutely find that out for you; but I 
was not the person doing the front end work on that, so I do 
not have any personal knowledge of that.
    Mr. Jackson. I appreciate that. The reason I was asking the 
question, and the reason the information is so important, when 
the Director of the CDC comes before us, I want to try and 
arrive at a realistic number, that our committee can try and 
support.
    Mr. Somma. I will make sure that that happens.
    Mr. Jackson. I can speak for myself. When I say a realistic 
number, I mean, not less than $2.5 million. The $2.5 million is 
what we are trying to go after as the starter. We can get a 
kind of ballpark figure from the Director. I cannot speak for 
other members on the committee, but we will do our very best. 
Thanks.
    Mr. Regula. I want to tell you, Alicia, you are very 
articulate. You are an effective spokeswoman. I think you will 
do a lot of good for your organization. You certainly impress 
me, and I am sure you did the rest of the members of the 
subcommittee.
    Ms. Somma. Thank you.
    Mr. Regula. So good luck in your future career, in whatever 
you choose; maybe it will be politics. [Laughter.]
    We are pleased that you came, and we are very aware of the 
message that you brought us. Thank you.
    Our next witness is Ginny Knowlton. She will be introduced 
by Mr. Jackson.
    Mr. Jackson. Mr. Chairman, since 1988, Ginny Knowlton has 
served as the Project Director for Program Excel, in the 
Academy Affairs Office at the Ohio State University 
Agricultural Technical Institute in Wooster, Ohio.
    As the Project Director of the U.S. Department of Education 
TRIO Student Support Services Grant Program, she is responsible 
for all phases of program design, development, implementation, 
and evaluation, including the coordination, training, 
supervision, and evaluation of a five member professional 
staff.
    She also supervises the direct service delivery of program 
activities to eligible students. The services include personal 
and career counseling, academic advising, professional 
tutoring, and support services to an at-risk student 
population.
    Before her current position, Ms. Knowlton served as the 
Academic Counsellor and Staff Assistant at the Ohio State 
University Agricultural and Technical Institute. In this 
capacity, she was charged with designing, implementing, and 
evaluating a retention-based orientation program.
    She has also provided academic advising to all students; 
developed an early warning advising system for students at 
academic risk; developed partnership programming between the 
Office of Academic Affairs and the Offices of Residing Living, 
Learning Assistant, Enrollment Development, Admission, and 
Financial Aid.
    She also designed and implemented Ohio State's ATI's 
counseling center, which provides short-term personal and 
social developmental counseling, in addition to career and 
lifespan planning programs.
    Mrs. Knowlton holds several teaching positions, as well. 
She is currently a member of the Adjunct Faculty at Ohio State 
ATI, and previously served as a member of the Adjunct Faculty 
at the University of Akron, Wayne College.
    She graduated with a BA in Liberal Arts from Bowling Green 
State University, and has an MAED in Community College 
Counseling from the University of Akron. Mr. Chairman, I 
present to the committee, Ms. Ginny Knowlton.
    Mr. Regula. I just want you to know how bipartisan we are, 
because these ladies are from my district.
    Mr. Jackson. Well, my wife graduated from Bowling Green 
State University.
    Mr. Regula. Oh, okay.
    Mr. Jackson. So I want you to know that she has an affinity 
of sorts.
    Mr. Regula. I knew there was something that I liked about 
you; you have got some Buckeye in you, in your lineage. 
[Laughter.]
    Well, we are going to have a series of votes here. We will 
go ahead with you, and then we may have tosuspend for a little 
bit; but we are happy to welcome you.
                              ----------                              

                                         Wednesday, March 14, 2001.

                        OPPORTUNITY IN EDUCATION


                                WITNESS

GINNY A. KNOWLTON, DIRECTOR, PROGRAM EXCEL, GAIL MILLER, DIRECTOR, 
    UPWARD BOUND
    Ms. Knowlton. Thank you, Congressman Jackson, Mr. Chairman, 
and members of the subcommittee.
    My name is Ginny Knowlton, and I am the Director of the 
TRIO Student Support Services Program at the Ohio State 
University Agricultural Technical Institute in Wooster, Ohio. 
Gail Miller, Director of Ohio State ATI Upward Bound Program, 
accompanies me.
    We are testifying today on behalf of the Counsel for 
Opportunity in Education, which represents administrators and 
counselors, working in the TRIO programs nationally.
    TRIO helps students to overcome the class and academic 
barriers that prevent many low income, first generation college 
students from enrolling in and graduating from college.
    The five TRIO programs work with young students and adults, 
from sixth grade through graduate school. Currently, there are 
over 2,400 TRIO projects, serving almost 750,000 needy 
students.
    Since the creation of TRIO programs over 35 year ago, an 
estimated two million students have graduated from college, 
with the support of TRIO.
    As Directors of TRIO programs, Gail and I have been able to 
experience first-hand the success and impact that TRIO can 
bring to a college campus.
    The individual attention of academic advising and 
counseling, combined with tutoring, supplemental instruction, 
cultural enrichment, and staff mentoring, empowers our students 
to succeed. Upward Bound programs help eligible high school 
students to prepare and enroll in college.
    Ohio State ATI's Upward Bound Program serves students from 
Timpkin and McKinley High Schools in Canton. These two schools 
have been declared by the State of Ohio to be an academic 
emergency.
    Because of the services provided in our Upward Bound 
Program, our students exceed the averages for their schools in 
the percentage taking standardized tests, graduating from high 
school, and enrolling in college. The program's alumni 
currently are enrolled in 11 universities, nationwide.
    While Gail's Upward Bound project continues to make a 
difference in the lives of the 50 students that it serves, 
there are approximately 1,000 students in the project's three 
targeted schools, that are left unserved, because of funding 
constraints.
    Student Support Services, the project that I direct, helps 
to retain and support eligible college students to graduation. 
At Ohio State ATI, 27 percent of our project students have 
learning disabilities. The national average of students with 
learning disabilities enrolled in college is only 10 percent.
    Our program services are based on research, and are proven 
to be effective. Project students retention and graduation 
rates, when compared to the overall campus rates, are higher.
    Nonetheless, due to funding constraints, my program can 
only serve one-third of the students that are eligible at our 
campus.
    Gail, myself, and my TRIO colleagues who join us today work 
with students who are wonderful people, intelligent, talented, 
and striving to succeed against crushing odds. The rewards in 
the form of student success keep us all inspired.
    Let me share just one success story with you today. In 
1997, one of Gail's brightest and most enthusiastic students 
Rose from Canton, told her that she could not come to the 
upward bound summer program. After some discussion, Gail 
discovered that the reason that Rose was not able to attend was 
that she did not have a bag to carry her clothes.
    Not having a duffle bag was only one of the many obstacles 
between Rose and college. She came from a school where few were 
expected to go on to college; from a family where no one had 
more than a high school education; and from a home where she 
was a boarder with relatives, supporting her stay with her 
wages from McDonalds.
    Rose perservered in Upward Bound and in high school. Today, 
she is a sophomore at Faulkner University in Alabama. Rose had 
to overcome tremendous obstacles in order for her toget where 
she is today.
    Current funding levels seriously limit the ability of TRIO 
to serve more students, and strengthen the quality of the 
programs. Studies have found that need-based grant aid and 
support services, such as those provided by TRIO, are critical 
to needy students.
    For these reasons, the counsel is recommending an 
appropriation of $880 million in fiscal year 2002, an increase 
of over $150 million. At this level of funding, TRIO programs 
would be able to serve an additional 140,000 needy students.
    For further details on our requests and additional success 
stories, I will have you refer to our written testimony.
    Mr. Regula. Thank you very much.
    For the members, we have two votes, two suspension. Do you 
have any questions, before we recess?
    [No response.]
    Mr. Regula. Well, thank you for coming. I had an 
opportunity to learn more about the TRIO program earlier in the 
week, and I probably will have some opportunities back in 
Canton, Ohio, to learn more about it, too, I suspect.
    We have to get over and vote, because we are in the last 10 
minutes; so thanks, again.
    The committee will suspend until roughly 12:25, or whatever 
time it takes for the voting process. Then we will reconvene. I 
do not want to hold any of you up, any longer than it is 
possible. So we will try to get back and move ahead.
    [Recess.]
                                         Wednesday, March 14, 2001.

                     AMERICAN PSYCHOLOGICAL SOCIETY


                                WITNESS

DR. ALAN G. KRAUT, EXECUTIVE DIRECTOR, AMERICAN PSYCHOLOGICAL SOCIETY
    Mr. Regula. We will reconvene the committee. I do not think 
we will have any more interruptions for votes.
    Our next witness is Dr. Alan Kraut, Executive Director, 
American Psychological Society.
    Dr. Kraut. Nice to be here. On behalf of the American 
Psychological Society, I want to thank this committee for your 
leadership in the bipartisan effort to double the NIH budget. 
We are part of the Ad Hoc Group for Medical Research Funding, 
and as part of that group, we are recommending $23,700,000,000 
as the next installment toward doubling NIH.
    Within this request, we are asking the committee to 
encourage increased behavioral research and training at NIH to 
better meet our Nation's health needs, many of which are 
behavioral. Let me elaborate just briefly.
    When you look at what determines health, and when you 
factor in the NIH portfolio, you cannot help but notice where 
behavior at NIH should be more visible. Smoking, drinking, 
taking drugs, all begin as behaviors. Many other health 
concerns--heart disease, lung disease, diabetes, obesity, 
mental illness, health disparities, developmental disabilities, 
AIDS, violence, teen pregnancy, and so many more cannot be 
fully understood without studying behavioral factors.
    Our field is prepared to expand along with the NIH budget. 
Our members are scientists at leading universities and 
colleges, conducting NIH research and training spanning from 
theoretical to applied, from basic to clinical. Virtually every 
NIH institute supports some psychological science. We look at 
interactions of emotion, stress, and physiology and their 
impact on health; we research how children learn and develop; 
we study the intersection of brain imaging and memory and 
thinking; the management of debilitating chronic conditions 
such as diabetes and arthritis, as well as depression and other 
mental disorders.
    In addition, our field is poised to make strides in 
scientific areas that did not exist a few years ago. The 
sequencing of the Human Genome has hit home the notion that we 
are in a new era of science. Leaders of the genome project and 
others repeatedly stress that genes alone cannot explain 
complex behavior or account for developing a particular 
physical or mental illness. They consistently caution against 
the notion that genes determine behavior, noting instead that 
the influence of genes on behavior is ``probabilistic, not 
deterministic.''
    The implications of mapping the human genome are enormous 
for psychological research. We are already asking, how do genes 
unfold in behavioral development? How do they interact with 
experience? Now that we know the genes, how do we use them?
    Let me just give you one example. Psychologists soon maybe 
able to use genes to better target behavioral interventions to those 
people who need them most, to tailor interventions to those at highest 
genetic risk. If we learn that certain genes put children at risk for, 
say, anorexia, depression, or even for diabetes, then those are the 
children for whom we need to develop specific prevention strategies. 
For diabetes, this may mean a much more aggressive approach to diet, to 
weight control, and a program to maintain compliance with taking 
medication. This is an often ignored but critically important and 
totally behavioral part of managing a disease. What this requires, 
however, is that at the same time as we are trying to understand how 
genes influence behavior, we need to more systematically study the 
behavior itself in the basic research laboratory and to use that 
information to develop targeted interventions.
    The emergence of fields like behavioral genetics draws from 
both genetics and behavioral research, and it illustrates the 
seamless connection between behavior and biology--a continuum 
that NIH should promote more than it does now. Cognitive 
neuroscience, the combined approach of mapping the brain's 
psychological functioning onto its biological functioning, is 
another such area. NIH's research and training policies 
sometimes create the appearance of an artificial distinction 
between behavior and biology. Yes, there is excellent 
behavioral science work being done producing breakthroughs that 
are sources of pride for NIH. But in other areas, behavior is 
too often ignored, particularly basic behavioral research. It 
is not until a person gets lung cancer, or emphysema, or heart 
disease, or liver damage that behavior is thought of. As 
important as the molecular and cellular origins of these 
problems are, the behavioral origins are equally important. How 
do the basics of learning, memory, perception, emotion, or even 
social development interact with the biology of various 
diseases? The answer is, there is a great deal of interaction 
among these factors. Almost no NIH disorder can be fully 
understood without also understanding its behavioral 
dimensions.
    My written testimony describes additional specific issues 
and examples to illustrate important behavioral science work 
that is now being done at NIH. Thank you.
    [The testimony follows:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
    Mr. Regula. I would be curious, what is the role of stress 
in psychological/physiological problems that people have? Is 
stress a significant factor?
    Dr. Kraut. Absolutely. In fact, there is a whole area of 
research called neuropsychopharmacology which is the 
interaction of stress, physiological symptoms, hormones on 
behavior. It interacts with diseases that are already present, 
such as AIDS, or diabetes, or heart disease, that might be 
genetically disposed but stress sort of brings it to the fore. 
So it is a big area of research at probably three or four 
different NIH institutes.
    Mr. Regula. In your judgment, is stress more prevalent now 
than it was in years past? Is this a characteristic of our 
society today?
    Dr. Kraut. It is certainly more researched now. I think 
that is a reflection of its being more prevalent. We know more 
about it now. It was probably around in some form or another 
even in earlier industrialized society, but we are certainly 
taking it much more seriously now.
    Mr. Regula. You are with the American Psychological 
Society.
    Dr. Kraut. Right.
    Mr. Regula. What mechanism do you have to disseminate 
breakthroughs in research so that the doctors across America 
can have the benefit of new ideas and new concepts to treat 
patients?
    Dr. Kraut. In fact, this is one of our major agenda items. 
We have some scientific journals that are aimed at other 
researchers, but our newest journals are aimed at a more public 
audience. So we have something called Psychological Science in 
the Public Interest, where our aim is to take just what you 
say, to take psychological findings that have some impact on 
what is going on in people's lives and disseminate them in less 
jargon-filled way to a broader public. We have been having good 
success and then in having those findings picked up by the New 
York Times or NBC Nightly News.
    Mr. Regula. Well, say I am a doctor in a rather small 
community and I have a patient that I recognize certain 
symptoms. Is there a website that a doctor could use to perhaps 
gain information that would help him or her treat the patient?
    Dr. Kraut. There is a website. I feel like I am on an 
infomercial. Yes, it is www.psychologicalscience.org. 
[Laughter.]
    So you do not forget, use it before midnight tonight.
    Mr. Regula. No charge.
    Any other questions? Yes, Mr. Kennedy?
    Mr. Kennedy. Mr. Chairman, I would like to ask our witness 
to explain what you mean by translational research centers in 
behavioral science, and why is NIH considering it.
    Dr. Kraut. In fact, it goes to some of the Chairman's 
points. The idea is we know a great deal, taking NIMH as an 
example, about basic research on emotion, its regulation, the 
development of language, basic cognition. All of those things, 
emotion, language, and cognition, have gone awry in 
schizophrenia, I am just using another example. The question 
is, how can we then translate what we know in the basic field 
to what is going on in clinics around the country with doctors 
treating schizophrenia, or having those same basic researchers 
start taking a more applied look at some of those more clinical 
areas.
    Mr. Kennedy. And if that is the case then, making the 
connection so people can learn from the science breakthroughs, 
why isn't the National Institute of General Medical Sciences 
doing anything in terms of behavioral science?
    Dr. Kraut. Well, it is actually one of the questions we 
raise in our testimony. We think as the basic research agency, 
they absolutely should be conducting training and research in 
basic behavioral science. In fact, this subcommittee has asked 
them to take a look at that over the last couple of years.
    Mr. Kennedy. But with the emphasis on child developmentand 
school readiness, why is it, do you think, that the National Institutes 
of Child Health and Human Development have gotten below average 
increases in funding?
    Dr. Kraut. Well, it is hard to say. But it is one of those 
areas that we wanted to bring to the subcommittee's attention. 
In lots of different Government programs children seem to have 
lesser standing. We want to make sure that those kids are 
brought to the fore.
    Mr. Kennedy. If I can, just in conclusion, Mr. Chairman. 
The Neurons to Neighbors Report that the National Academy of 
Science came out with is a scientific definition that this is 
not soft science in terms of psychology.
    Dr. Kraut. Absolutely.
    Mr. Kennedy. Psychology has always been looked at as soft 
science. This is a definitive look at the conclusion that 
children's emotional/social development is critical to their 
learning capabilities.
    Dr. Kraut. Yes. Yes.
    Mr. Kennedy. Mr. Chairman, when we take up the educational 
proposals, I think it would be great if we tied these two 
together because of the importance in school readiness that the 
President has emphasized and literacy, and the fact that 
cognitive and emotional and social skills are as important as 
the literacy.
    Mr. Regula. Thank you very much, sir.
    Mr. Jackson. Mr. Chairman, if I may just quickly 
congratulate the President of the American Psychological 
Association. Dr. Lisa Grossman and Kathryn Klure in the 
Illinois Psychological Association are great representatives of 
your organization and work very closely with them, and I just 
want to mention their names today. Thank you, Mr. Chairman.
    Mr. Regula. Thank you for coming.
                              ----------                              

                                         Wednesday, March 14, 2001.

                 JUVENILE DIABETES RESEARCH FOUNDATION


                                WITNESS

STEVEN DiPIETRO, VOLUNTEER, JUVENILE DIABETES RESEARCH FOUNDATION, 
    NORTH CANTON, OHIO, ACCOMPANIED BY BRAYTON DiPIETRO
    Mr. Regula. Our next witness will be Steve DiPietro, and he 
is accompanied by his son, Brayton. Steve is a volunteer for 
Juvenile Diabetes Research Foundation, and, I might add, is 
from the 16th District of Ohio. We are happy to have them here. 
I have seen them in my office.
    I want to say, Brayton, you are a courageous young man. You 
participate actively in your school's sports. Today you are a 
little crippled up, but that is healing up I guess. Are you 
going to throw the crutches away in a week or two?
    Brayton DiPietro. Oh, yes.
    Mr. Regula. You will be glad, won't you?
    Brayton DiPietro. Yeah.
    Mr. Regula. Right. But he has not let juvenile diabetes 
handicap his participation in all the activities of his school. 
We are really pleased that you are here and want to hear the 
testimony from both you and your father as to what we should be 
doing.
    Brayton DiPietro. Before I begin, I would like to thank 
Chairman Regula and this subcommittee for giving me the 
opportunity to appear before you and share my story. My name is 
Brayton DiPietro and I am pleased to be here today to testify 
on behalf of the Juvenile Diabetes Research Foundation. I am 
from Chairman Regula's home district in Ohio, and I am in the 
eighth grade at St. Paul's Grade School in North Canton. I also 
have diabetes and was diagnosed just after my eleventh 
birthday. I will be fifteen this June, so this summer will mark 
four years that I have had the disease.
    As you can see, I have a broken leg. I broke my leg on 
December 15th while sledding in my backyard. I will have some 
type of cast on for at least another month. The doctors were 
unable to use any rods or pins in setting my break because 
people with diabetes run a high risk of infection. We also heal 
slower. For a person without diabetes, the entire process would 
have taken about one fourth as long. This is just one example 
of how diabetes impacts my life.
    Many people believe that the life of an individual with 
diabetes does not change dramatically once diagnosed. I am here 
to tell you that is not true. I have to check my blood sugar by 
pricking my finger and give myself injections of insulin three 
or four times a day. I have to think about every single thing 
that I eat and when I eat it. As a teenager, it will not 
surprise you that I would love to sleep in on a Saturday 
morning. However, because of diabetes, if I do that, it would 
throw off my blood sugar levels and it could take several days 
to get back on course.
    Those, of course, are the good days. When I have the flu, I 
have to check my blood sugar constantly and my urine for 
ketones to make sure that I do not go into ketoacidosis, a 
condition that could be fatal in less than 24 hours. When I 
play baseball, I have to check my blood sugar level everyother 
inning in an effort to maintain proper blood sugar levels. Even taking 
these precautions, I have experienced loss of vision, dizziness, and 
general disorientation during a game.
    I have had approximately 6,000 finger pricks plus an equal 
amount of insulin injections in the past four years. That does 
not even count regular drawings of blood at the doctor's 
office. While I wait for a cure, the best thing that I can do 
is to continue to take proper care of myself, remain 
disciplined, and try to lead as normal a life as possible.
    Back in Canton, I hear a lot about the not so good things 
that sometimes happen in Washington. I am really glad to have 
the opportunity to be part of a good thing that is happening in 
Washington. Your subcommittee's leadership in doubling the 
National Institutes of Health budget by 2003 and working with 
JDRF to encourage the NIH to expand its juvenile diabetes 
research portfolio could allow me and millions of Americans 
with diabetes the ability to live a fuller and healthier life. 
Thank you.
    Mr. DiPietro. Brayton's story is not unique. In one form or 
another, it is shared by the 16,000,000 Americans who have 
diabetes. In addition to the personal burden, diabetes carries 
an extraordinary price tag--one in four Medicare dollars are 
attributable to individuals with diabetes, and the disease 
costs our Nation more than $100,000,000,000 annually. If we 
could cure diabetes, it could both solve the Medicare solvency 
problem and be a major boost to our economy.
    As you may imagine, I am very proud of my son, Brayton, who 
I witness each day persevere through his daunting regimen of 
living with diabetes. I do my share in fighting juvenile 
diabetes by volunteering with my local chapter of the Juvenile 
Diabetes Research Foundation, where I currently serve as the 
Board President. I am pleased that through our local walks, 
galas, and special events, JDRF will be able to allocate 
$120,000,000 for research this year.
    However, we cannot do it alone. This is why your continued 
support for the bipartisan effort to double the NIH budget over 
the next five years and provide the NIH with a $3,400,000,000 
increase in funding this year is critical to individuals with 
diabetes. And we are so proud our Congressman, Mr. Regula, is 
in a position to lead the effort.
    Last year, researchers announced that seven individuals 
with diabetes had been cured of the disease following the 
successful transplantation of insulin-producing cells. In my 
mind, the question is no longer whether this disease can be 
cured, but when it will be cured. Your support for doubling the 
NIH budget will help make this possible, and my family, and the 
millions of others who have diabetes thank you for making their 
hopes and dreams possible.
    Thank you for allowing us to come here today and share our 
stories with you.
    [The testimony follows:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
    Mr. Regula. I want to say to Brayton, I am very impressed 
with his courage and his ability to deal with a very difficult 
problem and still participate in the activities of his school. 
You have a great story to tell to encourage us to support this 
research. I might tell you that some of us on the committee 
visited NIH two or three weeks ago, and they are pursuing 
diligently and seem to be having some success, not around the 
corner, but hoped for success to address these problems. It is 
a matter of high priority with the National Institutes of 
Health. We hope, Brayton, in the not too far distant future 
that you will be relieved of some of the burdens that you have 
to carry now in participating in your school activities.
    I have to say that I have been impressed with these young 
people this morning, that young lady who was here earlier and 
now Brayton, in their ability to articulate the problem and 
their ability to cope with a real challenge. I give you high 
marks for what you are doing. You are certainly an encouraging 
example to others. I know when you were in the office and there 
were others in the office that had similar problems, some of 
them younger children, I am sure your example gives them 
courage to stay with the program and look forward to a cure. We 
are going to do what we can in this committee to provide 
assistance in that field along those lines.
    Do you want to comment any more?
    Brayton DiPietro. Thank you.
    Mr. Jackson. Mr. Chairman, I want to associate myself with 
your remarks.
    Brayton, we are all very proud of your courage. You are a 
fantastic spokesperson for this very unfortunate disease. Let 
me also commit myself to working with the Chairman to doing 
everything we can to provide NIH the resources to speed up the 
day when your batting average will significantly increase.
    Thank you, Mr. Chairman.
    Mr. Regula. I want to say also, Brayton, and I know you 
appreciate this, but you are a very fortunate to have a very 
supportive family. There are young people around this Nation 
who probably have similar problems who do not have that help 
that you get by having a father and mother that care a lot 
about you. That is a great blessing. Brayton is going to get 
another shot; I see he is on my schedule later on today. 
[Laughter.]
    That is one of the prerogatives that go with being from the 
Chairman's district.
    Thanks for coming.
    Mr. DiPietro. God bless you, and thank you all for your 
time.
    Mr. Regula. Thank you.
                              ----------                              

                                         Wednesday, March 14, 2001.

                  DYSTONIA MEDICAL RESEARCH FOUNDATION


                               WITNESSES

ROSALIE LEWIS, PRESIDENT, DYSTONIA MEDICAL RESEARCH FOUNDATION, 
    ACCOMPANIED BY: PETER COHEN, J.D.
    Mr. Regula. Mr. Jackson, I think you will be introducing 
our next witness.
    Mr. Jackson. Mr. Chairman, Rosalie Lewis, of Rochester, New 
York, currently serves as the President of the Dystonia Medical 
Research Foundation. Peter Cohen currently serves as a junior 
advisory member to the Dystonia Foundation. The Chicago-based 
Dystonia Medical Research Foundation is a wonderful example of 
a successful organization that has made a great impact on 
neurological research. Dystonia is a neurological movement 
disorder characterized by involuntary muscle contractions and 
postures. There are several different types of dystonia, 
including: focal dystonias, affecting specific parts of the 
body such as the arms, the legs, the neck, the jaw, the eyes, 
the vocal cords; and generalized dystonia, affecting many parts 
of the body at the same time. Dystonia does not affect a 
person's consciousness or intellect, but is a chronic and 
progressive physical disorder for which at this time there is 
no cure. Dystonia is believed to affect some 300,000 people in 
North America.
    The Dystonia Foundation has over 200 chapters, support 
groups, and area contacts across North America. In addition, 
there are 15 international chairpersons whose mission is to 
increase awareness, children's advocacy, development, 
extension, the internet, leadership, medical education, an 
online news group, and symposiums. It is because of the 
dedication and energy of Rosalie Lewis, the Dystonia 
Foundation, and members of the organization like Peter Cohen 
that society, and especially people who have dystonia benefit 
from the advances in science and are able to lead more active 
lives.
    It is my privilege to introduce Rosalie Lewis and Peter 
Cohen from the Dystonia Foundation, Mr. Chairman.
    Ms. Lewis. Thank you very much, Congressman Jackson. Thank 
you very much for having us attend today.
    Congressman Regula, I would like to introduce myself, as I 
have already been introduced, and Peter Cohen. We are both from 
the Dystonia Medical Research Foundation.
    As the Congressman has already said, dystonia is a chronic 
and progressive neurological movement disorder characterized by 
involuntary muscle contractions and postures. There are several 
different types of dystonia. Focal dystonias can affect the 
eyes causing excessive blinking, making you functionally blind; 
the arms; the legs; the jaw, preventing you from opening your 
mouth to eat; your vocal chords, preventing you from speaking 
properly. And then there is generalized dystonia that can 
affect all muscles of the body. Right now there is no cure for 
dystonia. We assume, and know, that there are at least 300,000 
people in the United States alone who have this disorder, and 
that is a conservative estimate.
    I am the proud mother of four grown sons, three of whom 
have generalized dystonia, and my fourth son is an asymptomatic 
carrier of the DYT1 gene. This gene is responsible for 
generalized dystonia that begins in childhood, and in my 
children it began around the age of seven, and progresses 
throughout their lifetime. I have witnessed and coped with the 
debilitating physical and emotional effects of dystonia on my 
children and my family for most of my adult life.
    As there is no cure for dystonia, and only in the past 
thirty years has research given way to treatments other than 
brain surgery, my sons have had some benefit from oral 
medication and botulinum toxin injections. Although we are 
fortunate to have these treatments available, the various drugs 
have significant cognitive side-effects.
    Mr. Cohen. Thank you, Mr. Chairman, and Congressman Jackson 
for that wonderful introduction. My name is Peter Cohen and I 
have dystonia. Because of this neurological disorder, I have 
great difficulty with basic tasks that many of us take for 
granted, such as writing, standing, walking, and sleeping, just 
to name a few.
    Dystonia first started to affect me when I was a teenager 
and has gradually worsened since then. As my dystonia worsened 
over time, it began to affect my professional and personal 
life. Because of my physical disabilities, I was forced to give 
up a successful career as an attorney. It also became 
increasingly difficult to be in social situations. I felt 
physically and emotionally awkward because of the challenges 
presented by dystonia. I started isolating myself because I was 
ashamed of my appearance. As my disease continues to worsen, I 
look forward to a day when a cure for this debilitating 
disorder can be found and I can fully participate in life. 
Thank you very much.
    Ms. Lewis. Thank you, Peter.
    I am very proud to say that I am the President of the 
Dystonia Foundation. The foundation was established 25 years 
ago to provide support and awareness to affected individuals, 
their families, and the medical community, as well as to fund 
dystonia-specific research for more effective treatments and 
eventually, hopefully, a cure.
    To date, the foundation has funded 338 grants and 3 
fellowships, totalling more than $17,000,000 in dystonia 
research. These seed grants that we provide researchers are a 
good start to finding new and better treatments for dystonia, 
but we cannot fund dystonia research alone and we really need 
your help.
    The foundation recommends that for fiscal year 2002 the 
National Institutes of Neurological Disorders and Stroke, and 
the National Institute for Deafness and other Communication 
Disorders be funded at $1,037,000,000 and 
$350,000,000,respectively. This represents a 16.5 percent increase over 
fiscal year 2001. This increase would be part of an overall request for 
doubling the funding for the National Institutes of Health by fiscal 
year 2003.
    We urge the subcommittee to recommend that NINDS provide 
the necessary funding for a dystonia epidemiological study and 
to increase efforts to educate public and health professionals 
about dystonia. We also encourage the subcommittee to support 
NIDCD in its efforts to revamp its strategic planning process 
by implementing a strategic planning group and to expand its 
intramural and extramural research portfolio on dystonia that 
is affecting the vocal cords.
    So, we are going to make it short for you today. On behalf 
of the hundreds of thousands of adults and children affected by 
dystonia, Peter and I want to thank you, Chairman Regula, 
members of the subcommittee, and all the staff people who are 
here today for your kind attention.
    [The testimony follows:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
    Mr. Regula. Thank you.
    Questions? Mr. Jackson?
    Mr. Jackson. Thank you, Mr. Chairman.
    Ms. Lewis and Mr. Cohen, is it your opinion that the 
National Institute of Neurological Disorders and Strokes is 
putting enough emphasis on dystonia, in light of the fact of 
this committee's and the President's intention to double the 
size of NIH's budget? Within neurological disorders, there are, 
obviously, a number of disorders. Specifically about dystonia, 
based upon your 25 years of service in this area, is there 
anything that the committee can do to sharpen the emphasis of 
the dystonia commitment by NIH?
    Ms. Lewis. Thank you for asking that. You know, dystonia is 
six times more prevalent than Huntington's Disease and ALS, Lou 
Gehrig's disease, yet we receive a fraction of the funds that 
go to the research for those neurological disorders. Although 
the research in one disorder might overlap to another disorder, 
dystonia is so specifically different that the protein folding 
and the genetics aspect of it is considerably different and 
needs to be funded separately.
    The NINDS has been very generous in a lot of areas, 
especially the funding most recently of various workshops that 
we have been able to bring in new researchers into the field. 
However, it is never enough. We really do need to have funds 
set aside for intramural and extramural in the genetics and in 
the epidemiological research. I know personally that the 
numbers are going to flaw us all. We have already funded a 
pilot program for the last two years out in California on 
finding the frequency of dystonia in the general population. 
The preliminary results are frighteningly larger than even we 
had anticipated.
    So those are the two areas where I would like to see extra 
funding. Thank you.
    Mr. Regula. Mr. Cohen, is this difficult to diagnose in an 
early stage? You apparently got it somewhat later on.
    Mr. Cohen. Yes. I was actually lucky to get it diagnosed 
within a couple of years. But I know many people who have gone 
from many, many different doctors and over a period of several 
years before they were able to even reach an idea of what they 
have.
    Mr. Regula. So they had trouble but they did not know what 
caused it?
    Mr. Cohen. Right. I think this sort of points to the issue 
of public awareness. Within the medical community it is a 
relatively unknown disorder. Many doctors, frankly, even some 
neurologists, are unfamiliar with it.
    Ms. Lewis. I can give you a personal short story. Because 
the disease does not show until the child reaches a certain 
age, the children are considered to be school-phobic or 
hysterical and told to go home and love your child more, or 
something like that. Then the doctors start looking for brain 
tumors or other sources. So, it does take years before it is 
diagnosed.
    Mr. Regula. Well thank you for coming.
    Ms. Lewis. Thank you very much. We appreciate it.
                                         Wednesday, March 14, 2001.

                   CHILDREN'S NATIONAL MEDICAL CENTER


                                WITNESS

PETER R. HOLBROOK, MD, CHIEF MEDICAL OFFICER, CHILDREN'S NATIONAL 
    MEDICAL CENTER
    Mr. Regula. Our next witness is Dr. Peter Holbrook, Chief 
Medical Officer, Children's National Medical Center.
    Dr. Holbrook, thank you for coming.
    Dr. Holbrook. Good afternoon, Mr. Chairman. On behalf of 
Children's National Medical Center, I would like to thank you 
for the opportunity to present our testimony to the committee 
today. My name is Peter Holbrook, I am the Chief Medical 
Officer at Children's, and I am here today to ask for your 
support.
    Children's National Medical Center has been serving this 
community, this region, and this Nation since 1870. We watch 
over our Nation's greatest resource--our children. Because of 
the scope of our mission, we truly believe that Children's 
National Medical Center is, indeed, a national institution. We 
treat children from every State in the country. We support 
pediatric specialists who are nationally and world renown in 
specific diseases, some of whom are the sole experts on certain 
rare conditions for which they either personally treat or 
consult on every child in the country who is afflicted with 
that disease.
    We house national child health advocacy efforts such as the 
Emergency Medical Services for Children National Resource 
Center, which is a national clearinghouse for information about 
emergency protocols and standards for treatment of children. We 
also founded the National SafeKids Campaign, which is a 
national organization with chapters in all the States committed 
to reducing accidental injuries to children. And we conduct 
significant Federal research supported by the National 
Institutes of Health and other Federal entities, much of which 
has had far-reaching and lasting impact on the health and lives 
of children everywhere.
    For all these reasons and many more, Children's National 
Medical Center is more than just your local hospital. It is a 
national resource.
    I am here to tell you that this is a place where special 
things, even miracles, can happen. For example, consider the 
case of Harris Bates, otherwise known as Pappy to his family. 
You all know Harris ``Pappy'' Bates, you may not know him by 
that name. Many of you will remember that horrible day last 
April when there were six children shot at the National Zoo. 
One of those children was 11-year-old Pappy Bates, who was 
critically injured with a gunshot wound that went through his 
head, entering on one side and ending up lodged in his skull on 
the other side. Pappy was brought to Children's with an injury 
so devastating that textbooks give it a greater than 90 percent 
fatality rate. In fact, the news media reported that night that 
he was dead.
    Today, Pappy Bates is like any other normal 12-year-old. He 
can walk, talk, and, best of all from his standpoint, he can 
play Nintendo. He is that way because Children's National 
Medical Center's trauma resuscitation team, the neurosurgery 
team, and most importantly, the critical care team just would 
not give up. They used all the technology and the commitment to 
bring him back so that they could save little Pappy Harris. 
This is just one example of thousands that pass through our 
doors every year. Every child is a Pappy Harris to us. Every 
member of the Children's team, from our doctors and nurses to 
our own child life specialists and therapists, all have one 
thing in common--our commitment to the care of children. Not 
only the children from right here in the District of Columbia, 
but to every child in this country. This is why we need your 
help.
    At the end of each year, there is very little left to 
reinvest in the facility itself. Generous donors offer 
significant support but it is barely enough to help us break 
even. We are asking Congress to step in and support the 
national mission of this institution by appropriating funding 
from the HRSA construction fund for Children's National Medical 
Center.
    Mr. Chairman, thank you again for the opportunity to 
present to you today. I will be happy to answer some questions.
    [The testimony follows:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]

    
    Mr. Regula. Thank you. I gather you are located here in 
Washington.
    Dr. Holbrook. Yes, indeed.
    Mr. Regula. Do you have a website so that people could 
benefit from knowledge that you gain?
    Dr. Holbrook. Yes, we do. It is www.dcchildrens.com.
    Mr. Regula. Do you get a lot of hits?
    Dr. Holbrook. Actually, quite a few, yes. It is very 
popular.
    Mr. Regula. One of the things that always troubles me is 
that I am not sure that all the good medical science and 
information that is accrued from research and so on gets out 
across the country. I gather that you have some success in 
doing that.
    Dr. Holbrook. We do. Plus, through our national 
clearinghouse efforts for safety promotion and emergency 
resuscitation protocols, and the like, we have been a national 
influence in this area.
    Mr. Regula. Very well. Thank you very much for coming.
    Dr. Holbrook. Thank you.
                              ----------                              

                                         Wednesday, March 14, 2001.

            NATIONAL ASSOCIATION OF STATE WORKFORCE AGENCIES


                                WITNESS

FERNANDO ``BUTCH'' LECUONA, PRESIDENT, NATIONAL ASSOCIATION OF STATE 
    WORKFORCE AGENCIES AND COMMISSIONER, NEBRASKA DEPARTMENT OF LABOR
    Mr. Regula. Our next witness will be Fernando ``Butch'' 
Lecuona, President, National Association of State Workforce 
Agencies and Commissioner of the Nebraska Department of Labor.
    Mr. Lecuona. Thank you, Mr. Chair, and members of the 
committee. Thank you for the opportunity to speak to you today 
concerning a critical need in the States.
    I represent 53 administrators who are responsible for 
employment and job training programs. This includes job 
placement, internet job matching, job training, welfare-to-work 
programs, unemployment insurance administration, and labor 
market information services. Most of my colleagues and I are 
gubernatorial appointees responsible for the workforce 
development programs. We are currently implementing a one-stop 
system infrastructure that will help employers find the workers 
they need, and help job seekers with the skills to enhance 
their careers. We marshal resources within a State to create a 
workforce development vision, implement new services, oversee a 
customer-driven system, and facilitate systems integrations.
    With this background, I want to highlight up front the 
critically important need for increased funding for 
unemployment insurance administration, the employment service, 
and labor market information programs. These three programs are 
the backbone of the one-stop system.
    I am here to advocate for more money for these programs. 
But I want to assure you of two things: First, for unemployment 
insurance, the employment service, and labor market information 
services, employers have already paid for these services via 
the FUTA tax. Secondly, there is a substantial return on 
investment in these programs, a return of $2 for every $1 
spent.
    Workforce services play an important role in the economy by 
assisting American workers who face job displacement as a 
result of low skill jobs being eliminated while job growth is 
occurring at high skill industries. Our services also provide a 
buffer to a slowing economy through more rapid reemployment of 
laid-off workers by quickly identifying businesses who are 
hiring workers.
    Last year, representatives from the States, the United 
States Department of Labor, business and labor groups met to 
craft a package of unemployment insurance and employment 
services reforms that included, among other things, repeal of 
the Federal Unemployment Tax Act of the 0.2 percent surtax and 
unemployment insurance and employment services administrative 
funding improvements.
    The short legislative timeframe and the intense budget 
negotiations that lasted well into 2001 kept action from 
occurring on unemployment insurance and employment services 
reform in the 106th Congress. However, because a number of 
governors and State business organizations have expressed 
support for this reform, it is our intent to work on a bill for 
this year.
    I would like to point out that States are now closing 
offices in local communities and reducing staff as a result of 
underfunding, substantially decreasing needed services to 
employers and job seekers. We urge Congress to fund fiscal year 
2002 unemployment insurance at $2,065,000,000, which reflects 
need based on workload.
    We also urge the Congress to fund Employment Service State 
Allotments at $933,000,000 and Reemployment Services at 
$35,000,000. Our request for Employment Service State 
Allotments represents the current appropriations plus the 
amount that State legislatures have funded, over $135,000,000, 
through State appropriations, plus a 4 percent growth 
allowance. It is unfortunate that State legislatures must 
essentially double tax employers to provide needed employment 
services while FUTA taxes are building excessive balances in 
the unemployment insurance trust fund.
    In 1998, Congress passed the Workforce Investment Act, the 
first major reform of the Nation's job training system in over 
15 years. It passed by a wide bipartisan majority, in part 
because it was designed to permit communities and States to 
build a workforce investment system that respects individual 
choices, reflects local conditions, and results in increased 
employment, retention, and earnings of participants, and 
increased occupational skills attained by individuals.
    We support the fiscal year 2002 appropriation of 
$988,000,000 for Adult Training, $1,147,000,000 for Youth 
Training, and $1,165,000,000 for Dislocated Worker Assistance 
that is essential for current services budget for the Workforce 
Investment Act programs with a modest 4 percent increase over 
the fiscal year 2001 levels.
    We also are working with incumbent worker training 
programs. We support $30,000,000 in the Workforce Investment 
Act funds for incumbent worker training. Labor market 
information pieces are extremely important. We support a 4 
percent increase for the Bureau of Labor Statistics, for a 
total appropriation of $213,000,000, and a continued investment 
of the one-stop/ALMIS dollars of $150,000,000.
    Obviously, our commitment to veterans is stronger than 
ever. We support the levels of $121,000,000 for the DVOP 
program, and $102,000,000 for the LVER program.
    In conclusion, I do believe we are making significant 
strides in building the workforce investment system in each of 
the States. With a potential slowing of the economy, we cannot 
afford to wait any longer for the improvements that need to be 
made so that families can be served with their workforce 
development needs. With additional investments by Congress, I 
know that we are prepared to help those citizens needing job 
placement or skills training assistance and those businesses 
looking for good, solid workers who can improve their economic 
prospects.
    Thank you for your interest and your support.
    [The testimony follows:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
    Mr. Regula. Thank you. Are the States doing their fair 
share, in your judgment? I assume this has State financing as 
well as Federal.
    Mr. Lecuona. Yes, sir. I think that States have really 
stepped up to the plate as well as at the local level local 
governments are also stepping up to the plate.
    Mr. Regula. You make every effort to avoid duplication. It 
seems like there are so many different training programs. I 
wonder sometimes if there is not duplication out there.
    Mr. Lecuona. I think the Workforce Investment Act that was 
passed went a long way in terms of assisting us at the State 
and local levels to really do away with the duplication of 
efforts. I think there is an honest effort on everybody's part 
to make sure that duplication is removed from the system. What 
we are really looking at is streamlining, we are looking at 
capitalizing on minimal investments that get from our Federal 
funds source to maximize that with State and local funding.
    Mr. Regula. Okay. Thank you for coming.
    Mr. Lecuona. Thank you very much.
                              ----------                              

                                         Wednesday, March 14, 2001.

                AMERICAN DENTAL HYGIENISTS' ASSOCIATION


                                WITNESS

STANLEY B. PECK, EXECUTIVE DIRECTOR, AMERICAN DENTAL HYGIENISTS' 
    ASSOCIATION
    Mr. Regula. Our next witness is Stanley Peck, Executive 
Director of the American Dental Hygienists' Association.
    Mr. Peck.
    Mr. Peck. Good afternoon, Mr. Chairman. On behalf of the 
American Dental Hygienists' Association, I thank you for the 
opportunity to testify regarding appropriations for the 
Department of Health and Human Services. I am Stanley Peck, 
ADHA's Executive Director.
    ADHA is the largest national organization representing the 
more than 100,000 dental hygienists across the country. Dental 
hygienists are preventive oral health professionals who are 
licensed in each of the fifty States.
    Last May, the U.S. Surgeon General issued Oral Health in 
America: A Report of the Surgeon General. This landmark report 
confirms that oral health is an integral part of general health 
and well-being. I want to highlight two key findings: One, the 
mount reflects general health and well-being. Indeed, signs and 
symptoms of health problems often appear first in the mouth. 
Secondly, although safe and effective measures exist to prevent 
the most common dental diseases, there are profound oral health 
disparities within the U.S. population. In fact, 80 percent of 
all dental disease occurs in 25 percent of children. The 
Surgeon General's report on oral health challenges all of us to 
address this compelling evidence of a silent epidemic of oral 
diseases that affects our most vulnerable citizens--poor 
children, the elderly, and many members of racial and ethnic 
minority groups.
    The link between oral health and overall health and well-
being must be recognized. The HRSA/HCFA Oral Health Initiative 
does just that. The goals of the Oral Health Initiative are to 
work toward the elimination of disparities in oral health, and 
to improve access to oral health services. Regrettably, much 
work needs to be done in both of these areas.
    As the General Accounting Office confirmed last year, 
dental disease is a chronic problem among many low-income and 
vulnerable populations and poor children have five times more 
untreated dental caries than children in higher-income 
families. The GAO further found that the major factor 
contributing to the low use of dental services among low-income 
persons who have coverage for dental services is finding 
dentists to treat them. Increased utilization of dental hygiene 
services, appropriately linked to the services of dentists, is 
critical to addressing the Nation's crisis in access to oral 
health care for vulnerable populations.
    Because access to preventative oral health services is 
vital to children's health and well-being, ADHA urges a minimum 
of $20,000,000 for HRSA's Oral Health Initiative so that access 
to oral health services for Medicaid and SCHIP children in 
particular will improve and disparities in oral health status 
will be lessened. ADHA further urges that the Oral Health 
Initiative receive a separate line item in the budget.
    ADHA additionally recommends that the position of Chief 
Dental Officer at HCFA be institutionalized and that funding 
for the position be made permanent.
    ADHA joins with other dental groups in urging a budget of 
$17,000,000 for oral health activities at the Centers for 
Disease Control. This funding level will facilitate important 
work in the area of community water fluoridation and school-
based dental sealant programs as authorized in the Children's 
Health Act of 2000.
    Further, as the Surgeon General's report on oral health 
demonstrates, scientific research at the National Institute of 
Dental and Craniofacial Research is vital to the Nation's oral 
health. Americans save nearly $4,000,000,000 annually in dental 
bills because of advances in dental research and an increased 
emphasis on preventive oral health care. To enable NIDCR to 
continue and to build upon its important research mission, ADHA 
joins with other groups in the oral health community to 
recommend $370,000,000 for NIDCR.
    The Ryan White dental reimbursement program provides 
partial reimbursement for the cost of providing oral health 
care to low-income people living with HIV and AIDS. TheNation's 
255 accredited dental hygiene education programs, I might add that is 
one in each State with the exception of Montana, and the Nation's 55 
dental schools are all eligible for this program. ADHA joins with the 
American Dental Education Association in recommending $15,000,000 for 
this HIV/AIDS dental reimbursement program.
    ADHA also recommends $21,000,000 for Allied Health Project 
Grants under Title VII of the Public Health Service Act.
    In closing, ADHA thanks the subcommittee for its 
contribution to improving the quality and availability of oral 
health services throughout the country. ADHA is committed to 
working with this subcommittee and all Members of Congress to 
improve the Nation's oral health which, as the recent Surgeon 
General's report on oral health so rightly recognizes, is a 
vital part of overall health and well-being.
    Thank you for this opportunity to submit the views of the 
American Dental Hygienists' Association.
    [The testimony follows:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
    Mr. Regula. Thank you. Is the dental hygienist a two or 
four year degree?
    Mr. Peck. Both.
    Mr. Regula. Both.
    Mr. Peck. Yes. There are dental hygienists with a 
baccalaureate degree, there are two year associate degree 
dental hygienists, Ph.D. dental hygienists. We are in every 
facet. We have approximately 255 programs. As stated before, 
there is a program in every State of the Union, with the 
exception of Montana.
    Mr. Regula. So a lot of the technical institutes would 
probably offer this as a two year course?
    Mr. Peck. They are professionally licensed in all 50 
States. And whether you are a baccalaureate degree graduate or 
a two year graduate, you have to complete the same 
requirements.
    Mr. Regula. And be licensed.
    Mr. Peck. Yes.
    Mr. Regula. Thank you very much.
    Mr. Peck. Thank you, sir.
                              ----------                              

                                         Wednesday, March 14, 2001.

                         COMMAND TRUST NETWORK


                                WITNESS

CHERIEN DABIS
    Mr. Regula. Our next witness is Cherien Dabis on behalf of 
Command Trust Network. I will be interested, that is a 
euphemism for something I think.
    Ms. Dabis. Mr. Chairman and members of this committee, my 
name is Cherien Dabis and I am representing Command Trust 
Network, an organization that started in 1983 to inform women 
about the risks related to breast implants. Command Trust 
Network promotes more research of breast implants through the 
National Institutes of Health and better oversight by the Food 
and Drug Administration.
    Many of you think the scientific and safety debate on 
breast implants is over. Yet, in 1999, the Institute of 
Medicine concluded that reoperations and complications are 
common enough to be the primary safety issue with silicone 
breast implants, and that risks accumulate over the lifetime of 
the implant, but the research is lacking on this point.
    In 1997, the Mayo Clinic found that one in four women 
required more surgeries within five years of implantation 
because of problems related to the implants. The rate was 
higher for mastectomy patients--one in three women.
    The FDA has never approved silicone implants, and just last 
year approved saline implants for the first time. Little is 
known about the long term health effects. Yet their popularity 
is growing a new generation of young women who are being led to 
believe that these implants are safe. I know, because, 
regrettably, I am one of these women.
    I was born with cystic hygroma, a rare benign tumor of the 
skin consisting of a collection of abnormal lymph vessels. At 
birth, a tumor the size of a grapefruit was perched on the left 
side of my neck. A series of surgeries removed the growth but 
left me with excess scar tissue, half of a pectoralis muscle, 
and limited range of motion in my left arm. As I developed, the 
asymmetry of my chest became more and more apparent. My left 
breast was significantly smaller than my right.
    At the age of 19, I underwent tissue expansion followed by 
reconstruction with breast implants at Christ Hospital in 
Cincinnati, Ohio. My plastic surgeon recommended silicone gel 
implants. But I had read about problems with silicone implants 
which in 1992 led the FDA to restrict their use. I assured my 
doctor I did not want silicone. He discounted my concern, but 
told me that saline implants were a safer option anyway and 
would last me forever.
    In December of 1995, I had my first operation to insert a 
tissue expander into my chest. Three months later the expander 
was taken out and my chest was implanted with the saline-filled 
breast implant and another custom made implant which was 
inserted under my arm to fill the cavity that resulted from my 
birth defect.
    My implant rose post-surgery, a complication known 
asimplant migration, and the implant under my arm felt more like a 
metal plate. My range of motion was further restricted. I began 
experiencing periodic pain in my chest and arm. I suddenly wished I had 
never messed with my body.
    Three years after my implantation, pure coincidence led me 
to a job where my responsibilities included research on breast 
implants. I learned that nearly 85 percent of reconstruction 
patients and 45 percent of cosmetic patients suffer 
complications like breast tissue hardening, leakage, and 
rupture. I watched as the FDA approved saline breast implants 
despite alarmingly high complication rates for reconstruction 
patients with 40 percent of patients having to undergo 
additional surgery within three years.
    Finally, my worst fears were realized when I stepped out of 
the shower on June 1st of this year and my breast implant 
ruptured. The pain and burning sensation in my chest worsened 
forcing me to undergo emergency exploration surgery. 
Thankfully, my previous work experience had put me in touch 
with Dr. Lu-Jean Feng, a Cleveland based surgeon who is one of 
the world's leading experts on microvascular breast 
reconstruction. After five hours of surgery, I woke up to find 
out that Dr. Feng had removed the deflated saline breast 
implant as well as the other device under my arm which was a 
solid silicone block.
    Although I was relieved to have the procedure behind me, I 
suffered from pain, fatigue, immobility, and side effects of 
the pain medication. My insurance did approve the procedure but 
I had to take out a sizeable loan in order to pay 20 percent of 
the cost up front.
    When I opted for reconstructive surgery, I read the little 
research that was out there. Only now do I know to what extent 
that research has been manipulated by the industry while the 
NIH has done very little research on the health effects of 
implants. Had I know the physical and emotional hurdles I would 
have to overcome due to breast implants, I would have made a 
different decision.
    Dr. Louise Brinton at the National Cancer Institute has 
conducted the largest study to date of the long-term health 
effects of breast implants. Although the first phase of her 
work was released last year, it is her research on local 
complications and atypical disease that may be the most 
compelling and help propel future breast implant research. 
Implant manufacturers and plastic surgeons have tried to 
publicly discredit Dr. Brinton and her work, even before it is 
published. Many women fear this controversy will slow or shut 
down what may be the most promising independent research to 
date. Regrettably, the NCI study does not include any 
mastectomy patients.
    In the last Congress, Congressman Gene Green sponsored a 
bill which called upon the NIH to conduct independent research 
on the long-term health effects of breast implants. I would 
like to thank Congresswoman Nancy Pelosi for supporting that 
legislation and urge the members of this committee to support 
the bill when it is reintroduced this year. However, on behalf 
of the millions of women who have implants and those who may be 
considering them, I ask this committee to direct the NIH to 
study breast implants focusing on their effects upon 
reconstruction patients.
    We could be on the brink of truly discovering what elements 
of breast implants are causing adverse reactions in women. But 
we need your help to ensure that thorough independent research 
provides the answers. This is the only way to make certain that 
more American women do not face the experience I have shared 
with you here today.
    Mr. Chairman, I thank you for the opportunity to address 
this committee.
    [The testimony follows:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
    Mr. Regula. Thank you. Are you saying that scientific 
evidence as to the impact of breast implants is inadequate for 
those who are considering this procedure?
    Ms. Dabis. I am saying that we do not have enough research 
on the long-term health effects of breast implants and, more 
importantly, we do not have enough independent thorough 
research on those long-term effects, especially the local 
complications which include rupture, leakage, and can include 
anything from bacterial infections.
    Mr. Regula. There were so many lawsuits, I am surprised 
that there is still an ongoing market. Are you telling me there 
is?
    Ms. Dabis. There absolutely is. More and more young women 
are opting to get cosmetic breast implants and also for 
reconstruction patients. Saline breast implants are currently 
their only option.
    Mr. Regula. Do doctors that perform this procedure give 
them any evidence of the hazards, or do they ignore that?
    Ms. Dabis. Unfortunately, as with my experience, and I 
think many other young women have similar experiences, the 
doctors really downplay the associated risks for some reason, 
and they do not communicate all of the complications. For 
example, I was not told that I would have certain 
complications. I had no idea that an implant could migrate. I 
had no idea that it could leak. I was told that it would only 
rupture if I suffered severe trauma to my chest, such as a car 
accident.
    Mr. Regula. Who supports your group, the Command Trust 
Network? Is this national in scope?
    Ms. Dabis. It is national in scope. It is currently just a 
clearinghouse of women who are providing information for other 
women on their experiences and on the complications of breast 
implants.
    Mr. Regula. Do you have a website so that those who are 
contemplating this procedure could at least be informed?
    Ms. Dabis. We do not have a website at the moment. I 
believe that we are working on that. But we do have a 1-800 
number that we disseminate to women who are looking to get 
breast implants or are thinking about it.
    Mr. Regula. Thank you for coming, and for the effort you 
are making to protect other young women.
                              ----------                              

                                         Wednesday, March 14, 2001.

                       AMERICAN HEART ASSOCIATION


                                 WITNESS

DR. ROSE MARIE ROBERTSON, M.D., PRESIDENT, AMERICAN HEART ASSOCIATION
    Mr. Regula. Our next witness is Dr. Rose Robertson, 
President, American Heart Association.
    Ms. Robertson. Thank you, Chairman Regula. I am a 
cardiologist and I am here today to talk to you on behalf of 
the nearly 61,000,000 Americans of all ages who suffer from 
heart disease, stroke, and other cardiovascular diseases.
    Cardiovascular disease will cost the American public nearly 
$300,000,000,000 this year. Medical research and prevention can 
change this, but only with your help.
    The American Heart Association and its 22,000,000 
supporters commend this committee's strong championship of NIH 
and CDC. But these agencies need further resources to direct 
research and prevention against America's number one killer--
heart disease, and the number three killer--stroke. Of course, 
both heart disease and stroke are not only killers but also 
major causes of permanent disability, greatly limiting the 
lives of my patients, and of our families, our friends, and our 
neighbors.
    There is a great opportunity at present to capitalize on 
the remarkable progress that has been made in understanding the 
causes of heart disease and stroke and in developing new 
treatments. Promising cost-effective breakthroughs are on the 
horizon with the potential to reduce health care costs and to 
improve the quality of life for all Americans.
    We urge you to take four steps for fiscal year 2002.
    First, appropriate a 16.5-percent increase over current 
funding for NIH, the fourth increment towards doubling the 
budget by fiscal year 2003.
    Second, double NIH funding for heart and stroke initiatives 
by fiscal year 2003.
    Third, allocate $50,000,000 for CDC's cardiovascular health 
program.
    Fourth, provide $12,500,000 to help rural communities buy 
automated external defibrillators and to train emergency 
responders.
    Let me remind you what your investment has already done to 
help more Americans survive heart attack and stroke and to 
survive them with a better quality of life, but also highlight 
what yet remains to be done.
    First, research has provided now the first effective 
emergency treatment for stroke. Clot-busting therapy can 
restore blood flow to the brain during stroke just as it can to 
the heart during a heart attack. That can significantly reduce 
permanent disability from stroke if it is given within three 
hours of the onset of symptoms. This could substantially 
benefit many of the 450,000 Americans who have a clot-based 
stroke each year. But this is only happening for 5 percent of 
the people who could benefit from this. How can this be?
    Many patients do not recognize the symptoms and do not come 
to the hospital in time, and often stroke is not treated as an 
emergency. We must improve this. Also, these patients would 
greatly benefit from new research to improve the imaging 
techniques that we use to diagnose stroke and from new drugs to 
help brain cells survive.
    For the exciting recent advances to achieve their fullest 
potential and to help us find new ways for stroke, funds need 
to be invested in new research, including health care delivery 
research.
    Second, more than 4,500,000 Americans suffer from 
congestive heart failure, many due to insufficient blood flow 
to the heart or because scar from heart attack has replaced 
healthy functioning heart muscle. New research suggests that we 
will ultimately be able to grow new blood vessels into heart 
muscle and replace scar with new working heart cells. This very 
promising research needs further support.
    Third, while cardiovascular disease affects both men and 
women, most women do not realize that cardiovascular disease 
takes more women's lives each year than the next 14 causes of 
death combined. Thanks to research, we have learned more this 
year about how hormones affect blood vessels and clotting and 
about how to reduce women's risks. And thanks to the inclusion 
of the Women's Cardiovascular Diseases Research and Prevention 
Act in public law, more women's lives will be saved. But more 
funding is needed to implement authorization provisions so 
NHLBI can expand research in this area and create effective 
real world solutions for women and their health care providers.
    Fourth, resources are needed to bring the benefits of 
research to the places where heart attack and stroke strike--
America's towns and neighborhoods. The CDC builds an essential 
bridge between what we learn in the lab and where we live. The 
strength of this bridge has been greatly enhanced by the 
creation of CDC's cardiovascular health program championed by 
Mr. Wicker. Thanks to this committee's support, 21 States, 
including Ohio, receive funds to design programs specific to 
local neighborhoods to prevent or control heart disease and 
stroke. But as Senator Bumpers pointed out, only 4 States have 
funds to implement these programs. A $50,000,000 appropriation 
for CDC would allow an expansion of this outreach to 10 more 
States.
    And lastly, you may have heard that Senator Voinovich's 
sister-in-law went into cardiac arrest at an inaugural ball in 
January. Fortunately, an automated external defibrillator and a 
trained responder were at hand and this small, easy to use 
device was used to shock her heart back into normal rhythm, 
saving her life. The Rural Access to Emergency Devices law 
authorized up to $25,000,000 over three years to help rural 
communities buy AEDs and train emergency responders. I ask you 
to appropriate $12,500,000 to allowHRSA to further implement 
this important safety net for our rural communities.
    Taken together, increasing resources for medical research 
and for community intervention programs will allow this 
Congress to make an important difference in the fight against 
heart disease and stroke. Thank you.
    [The testimony follows:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
    Mr. Regula. Thank you. You mentioned CDC and NIH. I am 
interested, do they avoid duplicating effort?
    Ms. Robertson. Yes, absolutely. The National Institutes of 
Health support the research that gives us the fundamental 
knowledge to know what to do. They also have some community 
programs. But the CDC's chronic disease programs really 
implement those programs, take that science to our 
neighborhoods, to the communities.
    Mr. Regula. What is your association? You must collect a 
sizeable amount of money nationwide in voluntary contributions.
    Ms. Robertson. The American Heart Association does. We 
spent approximately $335,000,000 last year on community 
programs and on research. We do not take any Federal dollars 
from NIH or CDC.
    Mr. Regula. Are you confident that you are not duplicating 
effort that is being done by Government?
    Ms. Robertson. Absolutely. We actually just recently signed 
a Memorandum of Understanding with the Surgeon General, with 
the NHLBI, the CDC, and NINDS to, in fact, assure that we 
worked together and that we do not duplicate but we leverage 
our programs.
    Mr. Regula. Okay. Well thank you for coming.
                              ----------                              

                                         Wednesday, March 14, 2001.

           AMERICAN ASSOCIATION OF PHARMACEUTICAL SCIENTISTS


                                WITNESS

JERE E. GOYAN, PRESIDENT, AMERICAN ASSOCIATION OF PHARMACEUTICAL 
    SCIENTISTS
    Mr. Regula. Our next witness is Dr. Jere Goyan, American 
Association of Pharmaceutical Scientists.
    Mr. Goyan. Thank you, Mr. Chairman, for this opportunity to 
appear before you. I am here on behalf of the American 
Association of Pharmaceutical Scientists, as you noted, whose 
primary interest is in the development of new drugs that will 
meet some of the needs that we have heard about today. Our 
membership of 11,000 people is totally in pursuit of these very 
important things.
    Basic scientific research conducted at the National 
Institutes of Health or sponsored by the NIH have resulted in a 
better understanding of new therapies for many diseases. The 
American Association of Pharmaceutical Scientists represents 
scientists in academia, industry, and Government. While not all 
of the members are supported by NIH funding, the impact of 
scientific discoveries derived from NIH-sponsored research has 
broad implications for all of our members who are developing 
new treatments.
    Pharmaceutical scientists trained in academic institutions 
often under the auspices of NIH become noted academic, 
industrial, or governmental researchers. Many of these 
scientists create knowledge in the basic sciences that form the 
basis for new approaches to the treatment of the diseases that 
bedevil mankind. AAPS members develop new methods of drug 
discovery, drug delivery and related technologies, 
pharmaceutical analysis, new information regarding drug 
metabolism and disposition, clinical evaluation, 
pharmacoepidemiology, and pharmacoeconomics--I won't ask you to 
repeat all those. All areas are important, however, I can 
assure you in ensuring the safety and availability of new 
therapeutic modalities.
    Currently, pharmaceutical scientists advise the NIH in 
direct collaborations and by participating in many study 
section review boards. Many pharmaceutical scientists have also 
been involved with small startup biotechnology companies. Now 
while not all of those companies have been successful, as we 
all know, I do painfully, a few have been enormously successful 
and changed the way that many of our diseases are now treated. 
Others are involved in innovative research that may lead to the 
next big breakthrough in the treatment of any one of a number 
of diseases. With the proposed reorganization of the NIH review 
process, this may be an appropriate time for our 11,000 members 
to expand their involvement in the evaluation of research 
related to the pharmaceutical sciences, and we certainly stand 
ready to do so.
    Because of the importance of the discoveries by NIH, the 
AAPS urges congressional support for funding at or above the 
proposed levels. Continued NIH funding is necessary to continue 
the leadership of the United States in the fields ofbiomedical 
research and the pharmaceutical sciences. There has been an explosion 
of biomedical and pharmaceutical knowledge, as we all know, in the past 
few years. It is now time that we used our efforts to develop the new 
therapies for those who are in need of such new therapies, as we have 
heard so tellingly today.
    Thank you very much for the opportunity.
    [The testimony follows:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
    Mr. Regula. Thank you.
                              ----------                              

                                         Wednesday, March 14, 2001.

                          UNIVERSITY OF MIAMI


                                WITNESS

CYRUS M. JOLLIVETTE, VICE PRESIDENT FOR GOVERNMENT RELATIONS, 
    UNIVERSITY OF MIAMI, CORAL GABLES, FLORIDA
    Mr. Regula. Our next witness is Cyrus Jollivette, Vice 
President for Government Relations, University of Miami.
    Mr. Jollivette. Mr. Chairman, thank you very much for 
inviting me to appear before you today. Before I begin, I would 
like to express, on behalf of all of my colleagues at the 
University of Miami, our appreciation for your leadership and 
that of the subcommittee in expanding the resources available 
to the National Institutes of Health to fulfill its vital 
mission for the nation.
    I am appearing here today on behalf of my colleagues at the 
University of Miami and its School of Medicine. We are a 
private, independent research university, founded in 1925, and 
our medical school is the first accredited medical school in 
the State of Florida. With our community partner, Jackson 
Memorial Hospital, we comprise the second largest medical 
center in the Nation and are recognized for excellence in 
research, teaching, and community service.
    One of the major objectives of the medical school's 
research programs is to promote interdisciplinary collaboration 
and translational research. Basic scientists and clinicians 
interact regularly through structured programs and disease-
oriented conferences. These interactions have resulted in 
innovative research and, more importantly, the translation of 
our basic laboratory findings to the clinical setting. The 
University of Miami has invested its own funds and those from 
many, many generous individuals, foundations, and corporations 
in numerous programs and facilities dedicated to advancing this 
objective. We actively leverage private and public dollars for 
the common good.
    In this regard, Mr. Chairman, we respectively request the 
subcommittee to allocate funding that assists in understanding 
the incidence and causes of disease among particularly 
vulnerable populations--children, women, the elderly, and 
ethnic minorities, especially Native American, Hispanic, and 
African-American populations. My colleagues are especially 
concerned about HIV/AIDS, respiratory diseases, and the elderly 
and elderly abuse.
    Specifically, we ask you to consider providing resources in 
three areas:
    First, to support programs through the Health Resources and 
Services Administration that allow for the enhancement of 
facilities and equipment that bolster HIV/AIDS basic research 
and treatment facilities and equipment especially for children, 
and particularly in entities with recognized epidemiological 
and clinical programs.
    Second, we urge the committee to support initiatives 
through the CDC and the Public Health Emergency Fund that will 
advance long-term organized community health utilization 
studies, especially those that examine the growing incidence of 
respiratory disease among minority populations. We 
havecollaborated with the Lovelace Respiratory Research Institute in 
New Mexico, from which you will receive testimony tomorrow. Our 
collaboration with Lovelace Institute is one that brings together 
recognized partners that have traditional affiliations with minority 
populations and that will allow the use of innovative research 
techniques that will help elucidate the significance of specific 
factors across different populations in these affected vulnerable 
populations and beyond.
    And finally, we urge the committee to provide funding 
through the Administration on Aging and the Health Care 
Financing Administration for programs and projects that address 
the specific issues of importance to the aging population, 
including: abuse and neglect, management models for unique care 
requirements, a focus on the role of families and caregivers, 
end-of-life care, mental capacity, and research ethics. We 
would envision programs and projects that would involve 
collaborations between university schools of medicine and law 
and clinicians and researchers in related university 
departments and in community agencies.
    Mr. Chairman, we understand how difficult a year this will 
be for you and the subcommittee. However, my colleagues and I 
at the University of Miami respectfully request that you give 
serious consideration to providing support for initiatives such 
as those I have described. Vital initiatives in these areas all 
have great implications and will provide exceptional benefits 
to the well being of the Nation.
    I thank you for allowing me to appear here today.
    [The testimony follows:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
    Mr. Regula. Thank you. Do you get contract research grants 
from NIH?
    Mr. Jollivette. Yes, we do, sir.
    Mr. Regula. How about CDC?
    Mr. Jollivette. And CDC. In our disclosure to you, we have 
submitted that for the last two fiscal years. And from the 
Department of Health and Human Services, a total of $88,600,000 
in the university's fiscal year 2000. From CDC--CDC is combined 
in that figure.
    Mr. Regula. I am sure you are confident that the taxpayers 
are getting their money's worth.
    Mr. Jollivette. I believe so, sir.
    Mr. Regula. Okay. Thank you very much.
    Mr. Jollivette. Thank you.
                              ----------                              

                                         Wednesday, March 14, 2001.

                          NEW YORK UNIVERSITY


                                WITNESS

DR. PETER LENNIE, DEAN AND PROFESSOR OF NEURAL SCIENCE, NEW YORK 
    UNIVERSITY
    Mr. Regula. Dr. Peter Lennie, Dean and Professor of Neural 
Science, New York University. Tell me, what is neural science?
    Dr. Lennie. Neural science, it is the study of the nervous 
system and how the brain works.
    Mr. Regula. Okay. I thought that might be it.
    Dr. Lennie. Thank you, Mr. Chairman. On behalf of New York 
University, I appreciate the opportunity to speak in support of 
public investment in basic and biomedical science. In 
particular, I salute the National Institute of Health whose 
support of biomedical and biological research is so important 
to the well being of the Nation.
    I would like today to underscore the importance of 
genomics, a field that NIH has designated as a priority. Many 
research universities, including NYU, are well positioned to 
make major contributions to it. The genome is a recipe for 
life. It contains the information needed to build, run, and 
maintain an organism. During the last decade, the unravelling 
of the genetic code has opened a vast range of opportunities 
for life scientists to understand what genes are, what they do, 
and how they do it. Genomics is growing extraordinarily rapidly 
and is revolutionizing the way we characterize and address 
biological and biomedical problems.
    The revolution was characterized first by achievements 
inanalyzing DNA in model organisms like yeast, bacteria, worm and fruit 
fly, then in the mouse, and now in humans. In the second phase, 
structural genomics, effort was focused on sequencing genomes and 
discerning the structure. We are now entering the third and very 
challenging phase of functional genomics in which we must learn the 
functions of the genes that have now been sequenced. This is a problem 
of enormous complexity.
    At New York University, we believe that comparative 
functional genomics provides a very powerful approach to 
understanding gene function. This approach looks for the 
occurrence of the same genes in different species that share 
particular structures of functions. It identifies what has been 
conserved over long evolutionary distances, and it determines 
the crucial differences that distinguish closely related 
species. This approach is particularly valuable because the 
genomes of even quite disparate organisms have a great deal in 
common.
    The potential of comparative functional genomics is vast. 
It promises an understanding of the workings of life in all its 
diversity. It offers a prospect of an enormously increased 
understanding of disease, from improved detection of 
predisposition to more effective prevention, to greatly 
improved diagnoses, to much more precisely targeted treatments 
customized for the individual. Beyond these advances, genomics 
offers the prospect of our being able to repair and regenerate 
organs. In short, genomics is ushering in a revolution in 
biomedicine.
    In addition to these huge advances in biomedicine, genomics 
promises equally startling transformations in other domains. It 
is the impetus to the development of entirely new scientific 
fields, such as bioinformatics. It is revolutionizing 
forensics. It is transforming agriculture by enabling us to 
develop crops with increased resistance to disease and crops 
that can also grow in less hospitable soils. It is driving 
change in computer science as well as in biotechnology, 
pharmaceutical, agricultural, and engineering enterprises.
    Investment in genomics is an ideal strategy for advancing 
fundamental studies in a range of scientific fields, 
facilitating biomedical applications that can enhance the 
public welfare, and energizing existing and new industries. 
This committee's commitment to support the National Institutes 
of Health and its genomics initiative is greatly appreciated.
    Mr. Chairman, this concludes my testimony.
    [The testimony follows:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
    Mr. Regula. Thank you. I assume New York University gets 
grants from NIH.
    Dr. Lennie. Yes, sir.
    Mr. Regula. How about CDC?
    Dr. Lennie. Not that I know of. But there may be part of 
the----
    Mr. Regula. Are they doing research on genomes?
    Dr. Lennie. Yes, indeed. We have a major research program 
in genomics based in both the biology department and in the 
medical school basic science departments.
    Mr. Regula. Is New York University State sponsored or 
private?
    Dr. Lennie. It is a private institution.
    Mr. Regula. How large?
    Dr. Lennie. It is the largest private university in the 
country. In terms of the number of students, 18,000 
undergraduates, 12,000 graduate students.
    Mr. Regula. So you obviously have a good research 
department.
    Dr. Lennie. We believe we have a very strong research 
presence.
    Mr. Regula. Do you have a medical school?
    Dr. Lennie. We have a medical school, yes.
    Mr. Regula. Do you have a hospital, a teaching hospital 
connected with that?
    Dr. Lennie. Yes. It is associated with the medical school.
    Mr. Regula. Where is it located?
    Dr. Lennie. Thirty-first Street and First Avenue in 
Manhattan.
    Mr. Regula. So it is downtown. Okay. Thank you for coming.
                              ----------                              

                                         Wednesday, March 14, 2001.

            COUNCIL OF STATE AND TERRITORIAL EPIDEMIOLOGISTS


                                WITNESS

DR. JAMES J. GIBSON, PRESIDENT, COUNCIL OF STATE AND TERRITORIAL 
    EPIDEMIOLOGISTS
    Mr. Regula. Our next witness, and our last witness today, 
is Dr. James Gibson, President, Council of State and 
Territorial Epidemiologists.
    Dr. Gibson. Mr. Chairman, I am Dr. James Gibson, State 
Epidemiologist and Director of Disease Control for South 
Carolina Department of Health and Environment. I am also 
President of the Council of State and Territorial 
Epidemiologists (CSTE), a professional organization of 400 
public health epidemiologists who work in local, State, and 
Federal agencies. I am here today in my capacity as President 
of CSTE to describe our funding recommendations.
    The Public Health Threats and Emergencies Act is landmark 
legislation that was signed into law on November 13, 2000. The 
act builds on three years of funding provided by Congress to 
prepare the Nation for bioterrorist attacks by strengthening 
the Nation's public health system at the local, State, and 
national level. It was introduced after a series of bipartisan 
congressional forums, committee hearings, and a GAO report that 
established that our public health system is not prepared to 
detect or respond effectively to significant public health 
threats, such as the threat of bioterrorism, a major outbreak 
of an infectious disease such as pandemic influenza, or the 
growth of antibiotic resistance bacteria.
    CSTE strongly supports the act at the authorized level of 
$534,000,000.
    Mr. Regula. You must work closely with CDC.
    Dr. Gibson. They are very important technical help to us in 
the States.
    Mr. Regula. Who uses your work?
    Dr. Gibson. In my role as State Epidemiologist for South 
Carolina, I am responsible for the quality of communicable 
disease control and environmental investigation for the 4,000 
people who do----
    Mr. Regula. And your organization is a collection of those 
in each State who deal with this?
    Dr. Gibson. Yes.
    Mr. Regula. And you are speaking on their behalf.
    Dr. Gibson. I am.
    Mr. Regula. And how do we affect you?
    Dr. Gibson. You affect us, to begin with, by this act, the 
Frist-Kennedy act, which would provide funds to begin to make 
up the deficiencies in ability to do public health work at the 
county and State level.
    Mr. Regula. Do you interact with the public health people 
from CDC then in your States?
    Dr. Gibson. I am sorry?
    Mr. Regula. Do you interact on behalf of the State with the 
CDC or with the Federal public health programs in your State?
    Dr. Gibson. Yes. Well, for CDC, the main impact is that we 
receive substantial grant or cooperative agreement funds to 
carry out public health functions at the State and local levels 
that we could not do without those funds.
    Mr. Regula. So, in a sense, you are an agent for CDC?
    Dr. Gibson. It feels pretty different to us, frequently. 
Our priorities are rather different than theirs. They have a 
national priority, and we try to integrate, for example, the 
many different streams of funds that come from different grants 
and cooperative agreements into a sensible whole at the State 
level. But in a sense, I guess that one could say that.
    Mr. Regula. Okay.
    Dr. Gibson. I will move along quickly. The act has four 
major components that are described in the written statement. I 
would like to focus briefly on two components of the act, which 
are in building public health capacity, and in bioterrorism 
preparedness.
    The public health capacity provision of this act has three 
main sections: To establish what are reasonable capacities for 
a State and local health department; to award grants to States 
to evaluate to what extent they have these capacities; and then 
competitive grants for the State to begin to fill in the gaps 
that are identified. This act authorizes $100,000,000 in year 
one for the public health capacity section, with an expectation 
that it would need to increase in future years as the gaps are 
identified and to work on them.
    I cannot stress enough the importance of this legislation, 
especially the support it provides for strengthening 
fundamental public health services. The basic elements of 
public health--disease detection, investigation, monitoring, 
delivering preventative services, and control--are really among 
the most crucial and cost-effective elements of our national 
health system. Yet, we have let public health become weak over 
the previous 20 years as we have had to compete with funding 
for personal health care as it has increased. As a consequence, 
we have become increasingly vulnerable as our economy has 
become more global. Our first best defense is a strengthened 
public health system.
    Of all the public health threats that we face now, I think 
that none is potentially more devastating than the risk of a 
major bioterrorist attack. For the past three years, Congress 
has provided funding to address this problem. But the 
cumulative deficiency in the ability of the State and local 
level is so great that we are just beginning to make up the 
weaknesses in our county and State health departments. This act 
will provide a framework to continue to address this very real 
threat.
    I would like to remind us of the recent national top-off 
exercise which was a bioterrorist simulation that was done in 
Colorado and at two other sites, which concluded at the end of 
this simulation the capacities and responsibilities that would 
be demanded from the medical and the public health system in 
the event of a bioweapons attack are not commensurate with our 
resources available. There were, in fact, serious deficiencies 
in the ability to make decisions rapidly, to coordinate, to set 
priorities, and distribute scarce antibiotics for the hospitals 
to handle the thousands of casualties of the simulation.
    In the interest of time, let me simply finish up by saying 
that we have five other recommended priorities that are in my 
written statement. But I would like just to finish by saying 
that we welcome the opportunity to provide our fiscal year 2002 
funding priorities and we are looking forward to working with 
the subcommittee to strengthen these areas of public health 
activity that we think are so crucial for protecting the 
American public.
    [The testimony follows:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
    Mr. Regula. Okay. Thank you for your testimony.
    This concludes the hearing today. The committee is 
adjourned.
                                          Thursday, March 15, 2001.

                            CANAVAN DISEASE

                                WITNESS

JORDANA A. SONTAG, PRESIDENT, JACOB'S CURE
    Mr. Regula. What the buzzer means is that the House is 
going into session this morning. We may even get interrupted 
for a couple of votes.
    We're pleased to welcome all of you and look forward to 
your testimony, and more importantly, look forward to trying to 
help in any way possible through funding research into the 
challenges that confront many of you. We've heard for the last 
two days from witnesses, and we have three days next week 
similar to this. We want to learn as much as we can about the 
needs of people and ways in which we, representing the Federal 
Government, can help.
    I do appreciate very much your coming here. I know that it 
has to be a challenge to get here, and you come from different 
parts of the United States. Unfortunately, we have to limit 
witnesses to five minutes, I wish we didn't. But in the course 
of this week and next, we'll probably hear from a couple 
hundred people, and it's the only way we can give opportunity 
for the Committee to hear from as many as possible. So we have 
limited it to five minutes.
    Let me say that your testimony, the full text of your 
testimony, will be put in the record and the staff will review 
it, so that as we put together a bill and make priority 
judgments on how to spend money on research, that we do the 
best possible way in using that money.
    I'm happy to be joined this morning by Mrs. Lowey from the 
State of New York, who is a very important and very 
compassionate member of this Subcommittee. Staff reminded me 
this little box is on the table, it's a system of five minutes. 
You get the green light for four, an amber light for one, and 
you get the red light at five. Most of us know what a red light 
means. [Laughter.]
    If you've got another 25 seconds or 30, we're not going to 
cut you off. But because of the great number of those that want 
to be heard, and we want to give everybody a chance to be 
heard, and we can't do that unless we do have five minute 
limits.
    But I think the important thing is that you can make your 
point and give us an idea of the needs. Then when we review the 
full testimony, we'll have an even more complete picture of the 
needs.
    Mrs. Lowey, do you have comments you would like to make?
    Mrs. Lowey. I want to thank you, Mr. Chairman, and I just 
want to tell all who are here today what a privilege it is for 
me to serve with Chairman Regula. I know that we both feel that 
it is truly an honor to serve on this Committee. We go through 
life trying to make a difference. And this is the kind of 
committee where you truly can, by our investments in medical 
research. We can see that people's lives improve, and we can 
give hope and faith to all those gathered here, and so many 
millions of people throughout the country.
    I feel truly honored to serve with Chairman Regula, because 
he's a person of commitment and compassion and truly believes 
in the work of this great Committee of ours. So I want to thank 
you again, Mr. Chairman. For me, it's an honor to serve with 
you.
    Today, I am honored to introduce Jordana Sontag, one of my 
constituents from Rye, New York. Jordana's beautiful son, 
Jacob, is here with her today. He has Canavan disease, a 
neurological disorder that destroys the myelin in the brain. 
Research into the treatment of Canavan, particularly gene 
therapy, could not only lead to a better and longer life for 
Jacob, but also contribute to treatments for many other 
diseases.
    Jordana has been a true hero, a tireless advocate for the 
need for greater research for Canavan disease. Because of her 
and her advocacy, she has appeared on the Today Show and the 
New York Times Magazine, which has helped people understand 
that there is hope.
    I want to just tell you, Jordana, how much I admire your 
courage, your tenacity. And I'm very pleased to present you and 
Jacob to this Subcommittee. Thank you so much for making the 
extraordinary effort it takes to help us understand what this 
is all about, and support our commitment to finding answers. I 
thank you for being here today.
    Mr. Regula. Thank you, Mrs. Lowey. If you'd like to come up 
here, Jordana.
    I want to point out that Jordana and many of you are not 
only trying to help in your own case, but as you bring our 
attention to these, and the attention of the public, you're 
helping others, so that you're really truly doing a wonderful 
thing for society.
    My staff is tired of hearing me say this, but I said, the 
Bible says there are two great commandments. The first is to 
love the Lord and the second is to love your neighbor. This is 
the love your neighbor committee of Congress. We deal with 
education, with medical research. And each of you, everybody's 
our neighbor. And each of you, as you make an effort, as 
Jordana has, and I'm sure many of you have in your own 
community, are being good neighbors, not only to those now, but 
in the future.
    Hopefully NIH will be a good neighbor and find the cure. 
That's what we're going to fund, and do everything we can as a 
committee to help. So Jordana, we'll be pleased to hear from 
you.
    Ms. Sontag. Good morning, Mr. Chairman and distinguished 
members of the Subcommittee. My name is Jordana Sontag, and I 
am the mother of Jacob, born in February of 1996, and six 
months later diagnosed with Canavan disease, a 
fatalneurological genetic disorder that affects the white matter of the 
brain. After being told that Jacob would never hold up his head, sit, 
crawl, walk, or say a single word, I was horrified to further learn 
that he would develop seizures, lose his ability to see, hear, swallow, 
and would die within the first decade of his life.
    Even worse than the diagnosis was the reality that there 
wasn't a single treatment to save my baby. Categorized as an 
orphan disease, I quickly learned that Canavan affected few and 
lacked any large scale research efforts. In short, saving my 
child meant committing myself to a crusade for a cure that 
included the search for research, aggressive fund raising 
efforts, and generating the awareness necessary for seeking 
funds and getting the support of influential contacts in both 
the political and medical communities.
    Within a month of Jacob's diagnosis, I had located 
researchers from Yale University and the Auckland School of 
Medicine who had successfully treated two Canavan children with 
gene therapy in New Zealand, and were planning to treat 15 
Canavan children, some of which are here today, in a U.S. phase 
one clinical safety trial. Following a lengthy review process 
through the NIH, FDA and the internal review boards at Yale, 
Jacob was treated in January of 1998 and treated once more in 
September of 1998.
    Jacob showed dramatic improvements, but most impressive was 
his ability to generate new white matter in his brain, and he 
was one of four treated Canavan children to do so. Presently, 
all the children that sit before you today have been waiting 
since May of 2000 for the approval of yet another gene therapy 
protocol that according to researchers is safer, less toxic and 
technologically advanced. Where the prior therapy successfully 
researched a few areas of the brain, data indicates that the 
new procedure will deliver the gene critical in saving these 
children to all the areas of the brain.
    With Federal funding for Canavan scarce and Federal grant 
applications by researchers continually denied, parents have 
been solely responsible for funding therapeutic research. Since 
1994, parental efforts have raised an estimated $2.5 million 
towards research in the pathophysiology of Canavan, gene 
therapy, the creation of animal models and approaches in areas 
of pharmacological enzymatic and neural stem cell 
transplantation.
    Clearly, great strides have been achieved. Not only have 
the lives of Canavan children been lengthened, their quality of 
lives have been enhanced. Equally important is the application 
of what has already been learned to other more common brain 
disorders, like Parkinsons, MS and ALS. It is the one enzyme 
deficiency and single gene defect of Canavan disease that 
appeals to researchers and makes a cure a tangible reality if 
funding were available.
    With great achievements, the momentum of therapeutic 
research in Canavan is quickly moving ahead towards a cure. But 
costs have vastly increased because of staffing requirements, 
materials, equipment and clinical costs. The estimated budget 
for the next three years is a staggering $7 million, a task too 
large for parents of dying children who must also care for and 
manage the day to day therapeutic, educational and medical 
needs of typical Canavan children.
    With the assistance of Federal support, therapeutic 
research in Canavan disease that can help the dying children 
before you today can continue. Without this much needed 
support, research may cease, almost definitely move along at a 
snail's pace, if only to rely on the efforts of parental fund 
raising. Without Federal funding, children with Canavan will 
continue to die, and any scientific gains that have already 
been achieved will have been wasted, throwing away any 
knowledge already achieved towards a cure for this devastating 
disorder, and other brain diseases that look to Canavan as a 
model.
    In closing, myself and the other families here today are in 
outspoken support of the Federal funding of stem cell research. 
We hope that this amazing potential of this crucial research 
will prevail in spite of political agendas. These beautiful 
children are here living with us today and they are loved 
dearly. They are innocent victims of Canavan, but do not have 
to be the victims of political battles that will freeze or deny 
access to lifesaving treatments.
    In short, stem cells may reverse the death sentences these 
children have all been born with, while simultaneously giving 
them the opportunity to develop and function independently. I 
hope that my testimony will serve as a request, but more 
suitably, a desperate plea for this Committee to earmark 
Federal funding for the support for existing therapeutic 
research in Canavan disease.
    For myself and the other families before you today, 
traveling with a Canavan child is no easy task. But perhaps our 
united presence will provide this Committee with a sense of 
urgency in which my request is made.
    I thank all the distinguished members of this Committee for 
the opportunity to testify today. But most importantly, I thank 
you for allowing me to share with you what is most precious to 
me, my beautiful boy, Jacob.
    [The information follows:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
    Mr. Regula. A very effective statement, and I'm sure you 
speak for every parent in here. And you would all agree with 
what has been said.
    Mrs. Lowey, did you have a question?
    Mrs. Lowey. I, too, want to thank you again for your 
courage and your valor. I know your presence here will 
hopefully encourage others to make that increased commitment. 
You've often talked to me about gene therapy trial approvals. 
In listening to your testimony, with all your great experience 
and knowledge in this area, would you consider that the primary 
focus, and that's what we should be really looking at?
    Ms. Sontag. I feel that there need to be special standards 
for children and patients that are quickly deteriorating and 
dying of disease. The same standards and review processes that 
are put to other disorders that aren't as quickly 
deteriorating, we don't have time to answer the amount of 
questions that have been posed to our researchers. We don't 
have the funding available for the answers and the regulations 
that are put forth, because we have one team of researchers 
working. We don't have a pharmaceutical firm behind this 
research. We don't have a team of 20 to 50 people.
    So when the FDA or NIH asks our researchers for things, it 
takes us that much longer, and in essence affects our children. 
Our children deteriorate by the day. So I really believe that 
there needs be a separate set of standards that apply to 
quickly deteriorating and fatal disorders.
    Mrs. Lowey. Thank you very much. Again, we appreciate your 
being with us today.
    Ms. Sontag. Thank you.
    Mr. Regula. You mentioned that there is research, and I 
give you great credit for making the effort to collect funds. I 
think you were telling me, with your husband, how you make all 
kinds of efforts to make money. That's wonderful that you care, 
but we need to care, too.
    Ms. Sontag. Yes.
    Mr. Regula. Where are you having research done thus far? 
Where have you put the funding to get research?
    Ms. Sontag. We currently fund research at Thomas Jefferson 
Medical College. Dr. Paula Leone, who is here with us today, 
runs the gene therapy lab that has been working with us, thank 
God, since Jacob's been born, in 1994. We also fund neural stem 
cell projects with Dr. Evan Schneider at Boston Children's. We 
also fund pharmacological approach with Dr. Morris Baslow.
    We are very informed consumers. We raise only so much 
money. We're proud of what we've done, but we feel that what we 
give our money to needs to be very viable, practical research 
that can help our children today. So we're not parents running 
after any type of snake oil out there. We have to be very, very 
specific in what we fund.
    With your help, this research can continue. We've come so 
far, we don't have a choice. Our children have death sentences 
that we are quickly fighting against, and it's a quickly 
ticking clock. But we do realize that what we've done so far 
has now had a snowball effect. The research is growing, it's 
moving toward a cure. But now the costs are just way too large 
for parents.
    Mr. Regula. Have you had any contact with NIH?
    Ms. Sontag. Yes, we have. In fact, there's currently a 
grant that's under review from Dr. Paula Leone. It was 
originally denied, but she will be meeting with the NINDS next 
week. We hope that they will change their mind and help us.
    Mr. Regula. Dr. Leone, thank you for coming, too. We were 
out at, the Committee went to NIH, and I know they're doing a 
lot of work on the gene therapy and trying to develop new ways 
of treating.
    Mr. Sherwood, do you have any questions?
    Mr. Sherwood. Just thank you so much, all the parents, for 
what you do every day. I certainly admire you and thank you for 
coming today and informing us. Because you know, this is 
something that some of us, myself included, don't have much 
knowledge of. We'll try to take it from here. Thank you.
    Ms. Sontag. Thank you.
    Mr. Regula. Is Mrs. Randall in the audience? You wrote to 
me, and that's the first I knew about Canavan. I've been doing 
some investigating since I heard from you.
    So to all of you, it makes a difference. You can tell your 
story, every one of you have got a Congressman. Tell your story 
to your Congressman. I know you obviously talked to Mrs. Lowey 
about it, and that helps us, too, when we get support from our 
colleagues. And Mr. Crane, I think, is bringing you to my 
office this afternoon.
    You deserve a lot of credit for helping, not only for your 
child, but for all the children across this Nation now and in 
the future.
    Ms. Sontag. May I ask a quick question before I leave?
    Mr. Regula. Certainly.
    Ms. Sontag. Is it possible to have this Committee earmark 
money for Canavan disease for research we've brought forth thus 
far? Is it possible to do that?
    Mr. Regula. Well, normally the way we urge the NIH, we tend 
to give them the money and they make choices. Because when we 
were out there, they said they could only fund 30 percent of 
the requests. These are requests that are put through peer 
panels and reviewed and reviewed in an effort to spread out. If 
you could have been here the last two days, we had similar 
hearings, and we'll have three days next week, you'd get some 
idea of the broad needs and all the challenges that confront 
NIH.
    Believe me, as a result of this hearing, we'll be very 
sensitive in our discussions with NIH.
    Ms. Sontag. I appreciate that.
    Mr. Regula. Because you're making great effort to help 
yourselves, and you deserve help from us.
    Ms. Sontag. Thank you.
    Mr. Regula. Thank you all for coming.
    We'll suspend for a few minutes, and I think probably most 
of you want to leave. So the Committee will be in recess for 
five minutes.
    [Recess.]
                                          Thursday, March 15, 2001.

                        NEW YORK MEDICAL CENTER


                                WITNESS

STEVEN J. BURAKOFF, M.D., DIRECTOR, NEW YORK INSTITUTE FOR CANCER 
    TREATMENT AND RESEARCH, DIRECTOR, SKIRBALL INSTITUTE OF BIMOLECULAR 
    MEDICINE
    Mr. Regula. Our next witness will be Dr. Steven Burakoff, 
the Director of the New York Institute for Cancer Treatment and 
Research, and the Director of Skirball Institute of Bimolecular 
Medicine. Welcome.
    Dr. Burakoff. Thank you. Good morning and thank you, Mr. 
Chairman. And thank you for the opportunity to testify before 
you and the Subcommittee today.
    As you mentioned, I am Dr. Steven Burakoff. I'm Director of 
the NYU Institute for Cancer Treatment and Research, an NCI 
designated cancer center, and Director of the Skirball 
Institute of Bimolecular Medicine.
    The NYU School of Medicine takes pride in its history that 
reaches back to 1837, and includes the initiation of and 
participation in many of the major events in American medicine 
throughout two centuries. The school graduates approximately 
150 physicians annually, it employs 3,000 individuals, 
including 800 faculty members. For over 150 years, the school 
has provided high quality patient medical services and medical 
supervision to the Bellevue Hospital Center, New York City's 
premier municipal hospital.
    The mission of the school is three-fold: the training of 
physicians, the search for new knowledge and the care of the 
sick. These three missions are carried out simultaneously, for 
they are wholly dependent on each other. This year, Dr. Eric 
Kandel, a graduate of the class of 1956, won the Nobel Prize 
for his studies in neurophysiology.
    The cancer center is a joint responsibility of the NYU 
School of Medicine and the NYU Hospitals, and is an integral 
component of the patient care, education and research missions. 
The NYU Medical Center was established in 1947, moving the NYU 
School of Medicine, the University Hospital and the Rusk 
Institute for Rehabilitation Medicine to one site.
    Since its inception, the NYU Medical Center has become a 
home for a variety of research and clinical programs, including 
the Institute for Cancer Treatment and Research, and has formed 
linkages with several New York Area health care institutions, 
including the Hospital for Joint Diseases, and the NYU Downtown 
Hospital. The NYU Medical Center is proud to have some of the 
finest programs in clinical care and medical research.
    I would like to thank the members of this Subcommittee for 
their strong commitment to the NIH. The NYU School of Medicine 
supports the goal of doubling the budget of the NIH over the 
next five years. As we enter year four of that commitment, this 
goal is as important as when the initiative began.
    Enormous breakthroughs have allowed great advances in our 
understanding of diseases and in our ability to devise new 
therapies. We know with certainty that this explosion of 
knowledge will continue. This Subcommittee has been a leader in 
ensuring that the NIH continues to receive the funding 
necessary to maintain America's leadership in the field of 
medical research.
    This support has also moved us close to the shared goal of 
translating the promise of scientific discovery into an 
improved quality of life for all Americans. For fiscal year 
2002, the School supports funding of the NIH at a level of 
$23.7 billion, which would keep us on track for the doubling 
over that five years.
    Increased NIH dollars flow into academic research 
institutions for cutting edge research. These institutions are 
feeling the pressure of limited infrastructure. Last year, the 
Subcommittee demonstrated strong commitment to addressing this 
issue by providing $75 million for extramural facilities 
construction programs at the NIH. And the School thanks you for 
that support. For the year 2002, the School supports funding 
this program at a level of $250 million to move us closer to 
addressing this need.
    The NYU Medical Center's Institute for Cancer Treatment and 
Research, as mentioned, an NCI designated comprehensive cancer 
center, is dedicated to cancer prevention, detection and 
treatment through basic research and applied clinical research 
and through innovative programs that blend humanistic patient 
care and scientific insight. Embracing new challenges and 
opportunities available in medicine today, the NYU Medical 
Center has developed an ambitious plan to revitalize and 
substantially expand its cancer programs and services.
    We will sharpen our focus on specific areas of excellence 
in cancer such as cancer of the nervous system by creating 
laboratories and resource cores at a new medical research 
building, and an ambulatory center and inpatient facility for 
oncology care that will have one of its major goals, that of 
the treatment of brain tumors and neural oncology.
    Although great progress is made in a number of diseases, 
clearly in the field of brain tumors and neural oncology, we 
have to date done poorly and if anything, have failed greatly. 
Thus, it becomes very important that research in support for 
this area is provided.
    We are in fact creating a pediatric and adult neural 
oncology program which offers multidisciplinary, integrated 
approaches that address the full research and clinical spectrum 
for care, and we request support for that goal.
    [The information follows:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
    Mr. Regula. Do you get a grant, any support from NIH?
    Dr. Burakoff. We received approximately $28 million in 
support from the NIH.
    Mr. Regula. For your research?
    Dr. Burakoff. For my own research?
    Mr. Regula. Well, for the Institute.
    Dr. Burakoff. For the Institute, yes.
    Mr. Regula. Yes. They told us there was some effort to get 
a vaccine for cancer. Has your institution done some work along 
those lines?
    Dr. Burakoff. We have. In fact, we have a program for 
melanoma, clearly one of the worst forms of skin cancer. We're 
committed to expanding the vaccine program as one of these 
cores, because I think as we learn, I myself as an 
immunologist, as we learn more about how to manipulate and 
stimulate the immune system, I think in fact our ability to 
develop a vaccine is going to become more and more of a 
reality.
    Mr. Regula. Any other questions?
    Mrs. Lowey. Thank you, Mr. Chairman.
    I want to thank you for your important testimony. I'd like 
to follow up with two questions. First of all, as you know, I 
think all of us here are absolutely committed to increase 
investments in the NIH and the important work that you're 
doing. You referenced your linkage with the Hospital for Joint 
Diseases. As you know, in New York, we're very blessed with 
many outstanding academic hospitals who are doing important 
research.
    My first question would be, if you could expand upon that, 
the kind of linkage that you have with the Hospital for Joint 
Diseases. Secondly, I'd be interested in the coordination 
between your hospital and Sloan Kettering, for example, and 
Mount Sinai or New York Columbia Presbyterian. I'm very 
interested in knowing what kind of coordination there is among 
the cancer centers.
    Secondly, I've been focusing, Mr. Chairman, for a number of 
years on clinical research. And I think we've come a long way. 
I'm not quite sure we're there. Many of our researchers focus 
on molecular research and to get that, and in my judgment, I 
think, unless it is transferred to clinical research and we see 
the benefits, sometimes you wonder where this research is 
moving.
    So I'd be very interested, secondly, in the clinical 
research that is underway at Skirball, and could you share with 
us some of that.
    Dr. Burakoff. Sure. Well, can I take your second question 
first?
    Mrs. Lowey. Absolutely.
    Dr. Burakoff. I completely agree with you. I think in fact, 
doing the basic research in a vacuum, without in fact having 
that information moved into the field of translation, is 
exactly what I believe in. In fact, I just came to NYU from 
Boston in September. The reason I was very much attracted was 
in fact to be both the Director of the Skirball Institute and 
the NYU Cancer Center, with in fact that vision of being sure 
that the information gained at a basic research institute would 
be translated into new treatments for cancer.
    I think in particular you can look at areas, for example, 
at the Skirball, where there's tremendous knowledge in the 
field of genetics of neurobiology, and we've begun, for 
example, we actually have now been able to take certain genes 
that have been shown to be important in the development of the 
brain, the cerebellum, some really world class researchers 
doing that, show that you can actually manipulate some of those 
genes and create a brain tumor called medulloblastoma, which is 
one of the major brain tumors of children. That information is 
extraordinarily important, because it's now given us the 
knowledge of the genetic basis for that.
    Now that, in itself, as you say, is not enough. The real 
question is, we now need to use that information to correct 
those defects. But if we didn't have the genetic knowledge, we 
would continue in this empirical approach. And I had been in 
Boston, actually, the head of pediatric oncology at the Dana 
Farber Cancer Institute, had the opportunity over 20 years to 
see us take childhood leukemias from 40 percent cures to 90 
percent cures, where childhood brain tumors had hardly moved at 
all.
    So in fact, and that much of the cure of the childhood 
leukemias has been through empirical studies. I think we've 
been really failing in the area of brain tumors. And I think we 
had to go back, and that's what I believe, to square one. We 
need the basic knowledge, the genetic bases of these diseases, 
to be able to use them to be able to create and do 
translational research.
    So that was a longwinded answer. I don't know if you want 
me to answer the first one.
    Mr. Regula. I think we're going to have to move on. We have 
26 more witnesses.
    Mrs. Lowey. I appreciate the patience of our Chairman, and 
I appreciate your coming here. Perhaps we can talk about that 
at another time. And I thank the Chairman.
    Dr. Burakoff. Thank you.
                              ----------                              

                                          Thursday, March 15, 2001.

                AMERICAN ASSOCIATION FOR DENTAL RESEARCH


                                WITNESS

STEVEN OFFENBACHER, M.D., DIRECTOR, UNIVERSITY OF NORTH CAROLINA SCHOOL 
    OF DENTISTRY, CENTER FOR ORAL AND SYSTEMIC DISEASES, AND PRESIDENT, 
    AMERICAN ASSOCIATION FOR DENTAL RESEARCH
    Mr. Regula. Our next witness is Dr. Steven Offenbacher, 
Director, University of North Carolina School of Dentistry, 
Center for Oral and Systemic Diseases, and President of the 
American Association for Dental Research.
    We're going to help you catch your plane.
    Dr. Offenbacher. Thank you, Mr. Chairman.
    I'm Steve Offenbacher, from the University of North 
Carolina at Chapel Hill. I'm here to speak in behalf of the 
American Association for Dental Research.
    I think that all the staff have been provided what we feel 
is an important fact sheet, and you have my written testimony 
that we've provided. I'd like to just highlight a couple of 
things that make this a personal issue and important for dental 
research. One of the things is that this last year, the Surgeon 
General has issued a first ever report on oral health. In this 
report, he emphasizes that there are profound and consequential 
disparities in the oral health of our citizens, and that there 
is a silent epidemic of dental and oral diseases affecting some 
population groups.
    These diseases include situations where babies are born 
with craniofacial defects every hour, one single baby every 
hour. Children with special health care needs represent 18 
percent of the U.S. children. These individuals are at 
increased risk for tooth decay, malocclusion, gum infections 
and other oral conditions. This results in a loss of school 
time, a lot of pain and suffering among children, and other 
problems leading to learning disabilities and lack of growth.
    Seventy-five percent of all the malformations that are seen 
at birth fall under the category of craniofacial, affecting the 
head and the face and the neck. Cleft lip or cleft palate 
occurs in 1 in every 500 live births. The cost of treating one 
child over a lifetime amounts to over $100,000.
    There is a tremendous opportunity for having an impact on 
the health of the public. For example, this last week, in 
Chicago at our annual meeting, there were reports that showed 
that if a mother has periodontal disease, her risk of having a 
premature baby increases five or six-fold. There are 
preliminary studies that show that treating patients, pregnant 
women who have gum disease, can reduce the risk of premature 
birth five-fold.
    Two-thirds of all infant mortality and morbidity is 
associated with prematurity. We have new evidence that shows 
that these oral organisms in our oral cavity in the mouth have 
evolved with us and can disseminate throughout the body, 
creating not only systemic inflammation, but also it can have 
consequences elsewhere in the body.
    This new information suggests that many diseases, that oral 
infection can affect many parts of the body and have important 
systemic ramifications. Half of all heart attacks occur in 
people who do not have any history or any component of known 
identifiable risk. We now have evidence, longitudinal evidence, 
suggesting that patients who have gum disease are twice as 
likely to die of a heart attack and three times as likely to 
have a stroke. This is after adjusting for other risk factors 
like cholesterol, high blood pressure and other well-known risk 
factors.
    We don't understand the causes of all these diseases. But 
we feel that one of the potential causes has been right under 
our nose all this time. We essentially have the opportunity, 
through clinical research, to really have an important impact 
on the health care of the public. One of the things that's 
critical is that we can identify genes, we can identify risk 
factors, but we're a long way from having a real demonstrable 
effect on public health with these therapies.
    In contrast, dentistry, and most of the oral conditions, 
are both preventable and treatable. I may not be able to manage 
a pregnant woman or get her to stop smoking, or get her to stop 
smoking crack cocaine. But I can put her in a dental chair and 
in 45 minutes have a very important potential impact on 
reducing infection in this mother.
    We feel that there is a tremendous opportunity for clinical 
research, that we need to have the opportunity to translate 
these findings into things that are going to affect the public, 
and if we had the health care manpower to make that happen.
    The AADR supports a funding level of $370 million to the 
fiscal year 2002 NIDCR budget. For AHRQ we recommend that 
funding be increased to $400 million. For the Centers for 
Disease Control, Division of Oral Health, we recommend $17 
million for fiscal year 2002, to enhance its prevention 
programs. We also join the Ad Hoc Group for Medical Research 
funding in urging the committee to provide a 16.5 percent 
increase for the National Institutes of Health.
    I see the yellow light, so I must emphasize our goal here 
is to improve the health of the public. The Surgeon General's 
report this year really emphasizes the key role that dental 
research plays.
    This concludes my testimony. Thank you for this opportunity 
to testify.
    [The information follows:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
    Mr. Regula. Thank you. I think you've certainly opened a 
new concept for me. I never think about the relationship.
    Any questions?
    Well, thank you for coming.
    Dr. Offenbacher. Thank you very much.
    Mr. Regula. We'll probably all run and make a dental 
appointment. [Laughter.]
    Dr. Offenbacher. Please do. And support the NIDCR, please.
                              ----------                              

                                          Thursday, March 15, 2001.

                      DUCHENNE MUSCULAR DYSTROPHY


                                WITNESS

STEPHANIE W. SERNAU, PATIENT
    Mr. Regula. Okay, our next witness will be Stephanie 
Sernau, and she'll be introduced by our colleague, Mrs. Lowey.
    Mrs. Lowey. Thank you very much, Mr. Chairman.
    It is certainly a privilege for me to introduce another of 
my constituents, Stephanie Sernau of Scarsdale, New York. 
Stephanie's son, Ben, has Duchenne muscular dystrophy. And I 
know that she's going to discuss this with you.
    Stephanie has tremendous energy and has fought for more 
research funding through the NIH for the disease. I know that 
her testimony will provide a look into caring for a child with 
DMD. I am so grateful that you've come here today, because 
unless we really hear from people such as yourself, with your 
commitment and your devotion and your passion, we really don't 
understand.
    So thank you again, and please proceed.
    Ms. Sernau. Thank you, Congresswoman Lowey. Thank you, Mr. 
Chairman, and other members of the Subcommittee.
    I'm Stephanie Sernau, I'm here on behalf of my son, Ben, 
who has muscular dystrophy. Duchenne muscular dystrophy, along 
with its milder form, Becker muscular dystrophy, is the world's 
most common lethal genetic childhood disease. I'm not here 
today seeking exceptional expenditures on behalf of these many 
children who are affected by muscular dystrophy. I'm here 
seeking equity.
    This disease, the world's number one fatal genetic disease 
of childhood, gets less than one one-thousandth of the NIH 
budget. I ask you to bring this disease to some semblance of 
parity with other disease of similar prevalence and severity. I 
don't know why federally-funded muscular dystrophy research has 
been so chronically underserved. I just know that as the mother 
of a little boy with Becker muscular dystrophy, I have to try 
to change things so that he can live with hope.
    At present, these children have no hope. Let me tell you 
why. They lose the ability to walk by age 10. They gradually 
lose their arm strength and ability to breathe, and they 
generally die in their early 20s or late teens. Scientists 
discovered the gene defect that causes Duchenne and Becker 
muscular dystrophy in 1987, but no treatment of any kind has 
been developed. It's incredible that for so many serious 
diseases, we don't know the genetic cause. But for Duchenne and 
Becker muscular dystrophy, we know the genetic cause. We've 
know for 14 years and nothing has been done with this 
knowledge.
    The prognosis for these children has not changed in the 
past 100 years. And if any of you are parents or grandparents, 
I know Congresswoman Lowey is, that should frighten you. 
Because no family is safe from this. Not only is Duchenne and 
Becker muscular dystrophy common and deadly, but it so often 
results from random genetic mutation. Two perfectly healthy 
parents with no genetic problems can spontaneously create a 
child with muscular dystrophy. And it cannot be prevented. That 
is what happened to me and my husband.
    Given these compelling facts, I ask why the NIH investment 
in muscular dystrophy research is abysmal, and why the 
structure at NIH doesn't foster science and research in muscle 
biology and disease. Two outstanding organizations support this 
science, those being Parent Project Muscular Dystrophy and the 
Muscular Dystrophy Association. But only NIH can commit the 
resources adequate to change the prognosis for these children.
    Today, I ask you to support two things on behalf of my son 
and the many other children like him. I ask you to increase the 
Federal investment in research with an overall increase of $20 
million per year over the course of five years, specifically 
for Duchenne and muscular dystrophy research. Congress must do 
what it has done for so many other diseases: it must allocate a 
small portion of the NIH budget specifically for research. This 
critical step will jump start an important research field that 
has been chronically short on support, and will build the 
research infrastructure to a more reasonable level.
    Secondly, the Centers for Disease Control and Prevention 
should be provided with the resources needed to assess existing 
research and initiative further research in Duchenne and Becker 
muscular dystrophy. These measures will not correct years of 
neglect to this important research, but they will begin to 
address the oversight in the near future, providing a more 
equitable share of federally funded research to muscular 
dystrophy and giving hope to the many children with muscular 
dystrophy, including my son, Ben.
    This morning, Ben went happily off to kindergarten dressed 
as one of the three bears, had no idea what important work 
we're doing here today. But I'm sure if he understood, he would 
thank you from the bottom of his heart. So please accept my 
thanks on his behalf.
    [The information follows:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
    Mr. Regula. Thank you. Does Ben like Little Bear?
    Ms. Sernau. Loves Little Bear, loves Goldilocks and the 
Three Bears. Anything with bears.
    Mr. Regula. My grandson is into Little Bear. [Laughter.]
    Mr. Regula. Any other questions? Mrs. Lowey?
    Mrs. Lowey. I know the time is late, and the Chairman has 
to hear from many other people. I just want to conclude by 
thanking you again, and thanking you for your work with the 
parent project. It's parents and your commitment that are going 
to find the answers, and we hope very soon. Thank you again for 
coming.
    Ms. Sernau. Thank you, and thank you all for your support.
    Mr. Regula. Mr. Peterson.
    Mr. Peterson. Do you have statistics of what numbers, how 
many young people are afflicted with this?
    Ms. Sernau. The incidence is at least 1 in 3,500 live 
births. Actually, that is why I'm asking for some support for 
the Center for Disease Control and Prevention. Because the 
tracking has not been very good. The incidence is very high in 
the population, but these children age out of the problem. So 
you see a lot of young people with muscular dystrophy, not a 
lot of older people with it.
    Mr. Peterson. Who's doing the best research on it 
currently?
    Ms. Sernau. I would have to submit that information to you 
later.
    Mr. Peterson. Would you?
    Ms. Sernau. Yes, I definitely would, yes.
    Mr. Peterson. I'd be very interested to get that. Thank 
you.
    Ms. Sernau. I will do it.
    Mr. Regula. I was struck by your saying that in 100 years, 
there's been very little progress on this particular thing.
    Ms. Sernau. None. The greatest breakthrough was in 1987, 
they discovered the gene defect. And that was really a 
tremendous, tremendous breakthrough. Because as I said, there 
are so many diseases we don't know what the genetic cause is. 
This one we do, we know exactly the gene. Gene therapy is the 
way to go. We can fix it.
    Mr. Regula. Thank you very much. Very good testimony
    Ms. Sernau. Thank you very much.
    Mr. Regula. We'll take that certainly into our 
consideration.
                              ----------                              

                                          Thursday, March 15, 2001.

                    AMERICAN UROGYNECOLOGIC SOCIETY


                                WITNESS

NICOLETTE HORBACH, M.D., PAST PRESIDENT, AMERICAN UROGYNECOLOGIC 
    SOCIETY
    Mr. Regula. Our next witness is Dr. Nicolette Horbach, the 
past President of the American Urogynecologic Society. We're 
happy to welcome you, and you can correct my pronunciation if 
you like.
    Dr. Horbach. Yes, I will. [Laughter.]
    Congressman Regula and members of the Subcommittee, I am 
Dr. Nicolette Horbach and I am here today on behalf of the 
American Urogynecologic Society, of which I served as President 
last year. Neither the Society nor I receive any Federal funds.
    The American Urogynecologic Society is a 21 year old non-
profit organization whose nearly 900 members have a special 
interest and expertise in the field of urogynecology and 
reconstructive pelvic surgery. Our membership includes 
gynecologists, urologists and allied health professionals in 
academic medicine and clinical practice.
    The mission of the Society is to promote research and 
education in the specialty and to improve the quality and 
delivery of health care to women with pelvic floor disorders. 
I'm extremely grateful for the opportunity to provide public 
witness testimony on behalf of the Society.
    I would also like to thank the Committee for its continued 
commitment to medical research. The Society recognizes the 
significant increases provided to the NIH in the recent past. 
And these increases have helped enable critically important 
research projects to be funded.
    However, it is necessary that Congress continue its 
commitment to doubling the NIH budget by 2003. Therefore, the 
Society supports a 16.5 increase in funding for fiscal year 
2002 for the NIH and for the NIDDK and NIA. The Society would 
further recommend that the National Institutes of Child Health 
and Human Development receive a 20 percent increase for fiscal 
year 2002. The NICHD historically has been one of the lowest 
funded institutes at the NIH, despite its broad based research 
programs spanning the full spectrum of human development.
    Urinary incontinence is defined as the involuntary loss of 
urine. A broad range of conditions and disorders can cause 
this, including smoking, genetic disorders, pelvic surgery, 
medical conditions, constipation, neurological diseases and 
degenerative diseases associated with aging. However, it most 
commonly occurs as a result of vaginal childbirth. Incontinence 
affects at least 13 million adults in the United States, 85 
percent of whom are women. Researchers believe that the 
condition affects significantly more women, but that they are 
too embarrassed to discuss this.
    In fact, studies show that more menstrual pads are bought 
in the United States for the management of incontinence thanfor 
menstruation. One in four women ages 30 to 59 experience incontinence, 
and 50 percent of elderly people living at home or in long term care 
facilities experience incontinence. It is the number two leading cause 
for nursing home institutionalization.
    Prolapse refers to the dropping of pelvic organs or vaginal 
walls through the vaginal opening. This create significant 
discomfort and a mass protruding that can be as large as a 
cantaloupe, creating urinary and defecatory problems. This is 
associated with stretching from childbirth. Age changes and 
lack of estrogen can further produce this problem.
    Studies show that one in nine women will undergo surgery 
for urinary incontinence and prolapse, but 30 percent of them 
will require further surgery. Clearly, this is a major health 
issue, and yet the NIH budget spends less than one half of 1 
percent doing research in this field.
    Research at the NIH has helped to expand the knowledge of 
the etiology and the diagnosis and treatment of both urinary 
incontinence and pelvic floor disorders. Responding to 
Congressional language report, the NICHD has led the recent 
efforts in research in pelvic floor disorders by developing a 
three pronged research approach. Part of this has been a 
terminology workshop, as well as funding eight basic science 
research grants.
    The second component of the NICHD research profile is to 
focus on epidemiology by developing an epidemiologic research 
program. The last component is the clinical trials network for 
female pelvic floor disorders, which expects to fund hopefully 
six to eight new grants in both epidemiologic research as well 
as six to eight clinical sites and one beta site for the 
network.
    But in order to make real progress, it is necessary to 
first understand how these things happen. The NIH has shown 
tremendous progress in expanding scientific information needed 
to address the public health challenges of urinary incontinence 
and pelvic floor disorders. The historical commitment of the 
NIH shows a clear record of building upon previous knowledge to 
improve the diagnosis and treatment of disorders that I as a 
urogynecologist see every day.
    Further understanding of the basic science and terminology 
of these conditions will lead to better treatment strategies 
and potential cures, and more importantly, possible strategies 
for prevention of these disorders. A 16.5 increase in funding 
for NIH will help identify medical breakthroughs that are on 
the brink of discovery and will ensure that Congress keeps its 
commitment to doubling the budget over five years.
    Thank you.
    [The information follows:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
    Mr. Regula. Thank you. Questions?
    Thank you for coming.
    Dr. Horbach. Thank you.
                              ----------                              

                                          Thursday, March 15, 2001.

        AMERICAN ASSOCIATION OF COLLEGES OF OSTEOPATHIC MEDICINE


                                WITNESS

MATTHEW SCHURE, PRESIDENT, PHILADELPHIA COLLEGE OF OSTEOPATHIC 
    MEDICINE; CHAIRMAN, BOARD OF GOVERNORS, AMERICAN ASSOCIATION OF 
    COLLEGES OF OSTEOPATHIC MEDICINE
    Mr. Regula. Our next witness is Dr. Matthew Schure, 
President of the Philadelphia College of Osteopathic Medicine, 
Chairman of the Board of Governors, American Association of 
Colleges of Osteopathic Medicine. Welcome, Dr. Schure.
    Dr. Schure. Good morning, Mr. Chairman and members of the 
Subcommittee. I'm Matthew Schure, President of the Philadelphia 
College of Osteopathic Medicine and Chairman of the Board of 
Governors of the American Association of Colleges of 
Osteopathic Medicine. I'm pleased today to present the views of 
our 19 colleges on fiscal year 2002 appropriations for health 
professions, education assistance programs under Titles VII and 
VIII of the Public Health Service Act.
    My testimony is also endorsed by the American Osteopathic 
Association, the American Osteopathic Health Care Association, 
the American Osteopathic Directors and Medical Educators, and 
the American College of Osteopathic Family Physicians.
    First, I would like to express our appreciation for the 
past efforts of this Subcommittee to maintain a commitment to 
health professions education. This Subcommittee's vision has 
enabled health professions in general and colleges of 
osteopathic medicine in particular to address the physician 
workforce needs dictated by rapidly changing health care 
delivery system.
    However, we are not yet able to say that we are in a 
position to completely meet these work force needs. Healthy 
People 2010, a document that serves as a blueprint for health 
care delivery, has articulated two overarching goals: increased 
quality and years of healthy life and eliminate health 
disparities. To achieve these goals by 2010, we must begin now 
to train health professionals who have the necessary skills and 
commitment.
    At the same time, we recognize the responsibility of the 
Subcommittee to examine all programs in light of their cost 
effectiveness in meeting the health care needs of all 
Americans. We believe colleges of osteopathic medicine measure 
particularly well under this scrutiny. By training and by 
tradition, osteopathic physicians practice hands-on, holistic 
medicine and value the highly close and interactive physician-
patient relationship that is characteristic of our profession.
    AACOM member schools have a long history of dedication to 
training primary care physicians to work in America's smaller 
communities, rural areas and underserved urban areas. 
Osteopathic physicians represent 5.5 percent of the U.S. 
physician work force, but constitute 15 percent of the 
physicians practicing in communities of fewer than 2,500 
population. The Health Professions Assistance Programs under 
Titles VII and VIII and the Public Health Service Act have been 
most valuable in our efforts to continue this commitment to the 
underserved.
    For example, the Philadelphia College of Osteopathic 
Medicine received a three year grant from the Health Resources 
and Services Administration to develop a pre-doctoral 
curriculum which places significant emphasis on a comprehensive 
and integrative approach for health care for medically 
underserved persons. This program will serve as a model for 
medical institutions interested in reaching out to medically 
underserved populations by training doctors to understand the 
socioeconomic aspect of patients' lives in order to provide 
them with the most appropriate, comprehensive and integrated 
health care.
    Mr. Chairman, the Ohio University College of Osteopathic 
Medicine has had great success with Title VII funding. Through 
these grants, three family practice residency clinics in 
Toledo, Cleveland and southeast Ohio were able to expand their 
access to patients and communities that had no other medical 
care available. Ohio University College of Osteopathic medicine 
was able to develop a geriatrics program and a behavioral 
medicine program to provide treatment for these populations in 
underserved communities.
    An outreach program was initiated where family practice 
residents provide a monthly program on various health topics 
for the community, and provide education on smoking, drugs and 
proper nutrition to the schools and underserved areas. And a 
physician and several residents and students go to migrant 
worker camps to provide both pediatric care and screening.
    Title VII also authorizes student assistance programs that 
are especially important to osteopathic medical students. 
Congress should be concerned with minimizing the debt load of 
graduates of health profession schools if they in turn can be 
expected to hold down medical costs, practice in primary care 
and locate in underserved areas.
    Accordingly, Mr. Chairman and members of the Subcommittee, 
AACOM recommends that the fiscal year 2002 funding levels for 
Titles VII and VIII be $440 million. This funding level would 
provide a much needed boost to ensuring the training of a work 
force which would deliver the types of services and providing 
the full access to those services identified in Healthy People 
2010.
    Finally, Mr. Chairman and members of the Subcommittee, the 
American Association of Colleges of Osteopathic Medicine 
supports the Ad Hoc Group for Medical Research Funding request 
of $23.7 billion for the National Institutes of Health for 
fiscal year 2002.
    Again, I appreciate the opportunity to present our views to 
the Subcommittee, and would be happy to answer any questions.
    [The information follows:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
    Mr. Regula. Thank you.
    Any questions? Yes.
    Mr. Peterson. What percentage of your graduates currently 
are entering the primary care field?
    Dr. Schure. About 60 percent.
    Mr. Peterson. Congratulations.
    Dr. Schure. Thank you.
    Mr. Sherwood. Doctor, the people of the most sparsely 
populated county in my district, Sullivan County, have been 
very fortunate to enjoy the services of your medical center 
there for the last 25 years. I understand that we're in danger 
of losing that, and I'd like to discuss it with you at another 
date. It's been very successful for 25 years.
    Dr. Schure. We share your aspiration to keep the center 
open.
    Mr. Sherwood. Thank you.
    Mr. Regula. Thank you for coming.
    Dr. Schure. Thank you.
                              ----------                              

                                          Thursday, March 15, 2001.

                      SUDDEN INFANT DEATH SYNDROME


                               WITNESSES

MARK AND NICOLE SMITH, THE SUDDEN INFANT DEATH SYNDROME ALLIANCE
    Mr. Regula. We've been joined by Ms. Kaptur, who's from my 
home State of Ohio. Would you like to introduce your guest from 
here?
    Ms. Kaptur. I really would, Mr. Chairman.
    Mr. Regula. Ms. Kaptur is a member of the Appropriations 
Committee. She's taking care of the farm programs for us, 
right?
    Ms. Kaptur. Trying to, Mr. Chairman, trying to.
    Thank you so very much. Thank you for receiving us this 
morning. And I want to thank all the other members who are here 
today.
    It's my great privilege to introduce to you residents of my 
community, Mark and Nicole Smith of Toledo, Ohio. They are here 
to present testimony on behalf of the Sudden Infant Death 
Syndrome Alliance. Every year more than 3,000 infants die of 
SIDS in our country. In fact, their son, Chandler, died of SIDS 
on April 23rd, 1997. He was a three month old healthy and happy 
baby with very, very loving parents. He has transformed their 
lives, and they are now, through him, trying to help many other 
young people and families across our country.
    They have dedicated their time and energy to the education, 
awareness and support in our area, all of northwest Ohio, as 
well as nationwide. Nicole has served as president for our SIDS 
network in northwest Ohio, and their dedication to trying to 
find an answer to why SIDS happens and how to prevent it is 
absolutely limitless. It is my privilege to present to you 
Nicole and Mark Smith. Thank you very much for coming to 
Washington.
    Mr. Regula. We appreciate your coming.
    Ms. Kaptur. I told her she'd be comfortable, because we had 
a Chairman from Ohio.
    Mr. Smith. Chairman Regula, members of the Subcommittee, 
thank you for the opportunity to address you and explain what 
Sudden Infant Death Syndrome is, and the importance of Federal 
funding for SIDS programming and research.
    My wife Nicole and I became part of the SIDS community when 
our son, Chandler, died in 1997. He was our firstborn son. We 
did not believe nor understand why this happened to us. This is 
a picture of Chandler, taken two weeks prior to his death. He 
was a happy, healthy three and a half month old baby boy who 
had his whole life ahead of him.
    Mr. Chairman, we're here to ask for your help, your 
commitment and your support to find out why.
    Chandler was a very wanted and very loved baby. Nicole 
suffered a miscarriage prior to becoming pregnant with him. We 
read all the books and I remember skimming through the section 
on SIDS. It happens to one in a thousand babies, on average. I 
read about the risk factors, poor prenatal care, young maternal 
age, hard drug use, and we did not fit the mold.
    Chandler was nine pounds one ounce when he was born, and 
amazingly, just one epidural. [Laughter.]
    And he was a breast fed baby, and he still died of SIDS on 
April 23rd. He slept on his back, he was strong enough to push 
himself up, roll over, and he was 18 pounds when he died. SIDS 
knows no race, creed or economic level. SIDS can happen even if 
a child does not have any of the risk factors, and often does. 
SIDS cannot be predicted, prevented or reversed. And to this 
day, Nicole and I are still asking why.
    I can tell you all about April 23rd and how it started out 
like any other day and ended like no day should. I remember 
coming home from the hospital to an empty apartment and an 
empty crib and not understanding what had happened just hours 
before. I remember planning a funeral for our son, who two 
months earlier had just been baptized. I remember family and 
friends crying and not knowing what to say. I remember not 
wanting to talk to anyone, and then needing to find out why, 
what had we done wrong.
    I remember when we went to our first support group meeting. 
We talked for two hours straight, no other parent got a chance 
to say anything. And I remember the next monthwhen we were 
there again, and still, we were the centers of attention. We were the 
rookies. But too quickly, we were replaced by a new couple who had lost 
their child. And after four short years, we're veterans. But we still 
remember each day like it was yesterday.
    So what is SIDS? I wish I had the answer. It's easier to 
tell you what SIDS is not. It's not apnea, it's not 
suffocation, it's not child abuse, it's not caused by 
immunizations, it's not contagious. There's no such things as 
near-SIDS. SIDS is not preventable, predictable, and it's not 
anyone's fault. But we believe that some day we will know what 
SIDS is, with agencies like the National Institute of Health, 
specifically the National Institute of Child Health and Human 
Development, the Centers for Disease Control and the Maternal 
Child and Health Bureau, we will find the answers that we and 
too many other people are looking for.
    Since 1992, the Back To Sleep education and awareness 
campaign has helped reduce the risk of SIDS by 42 percent. 
Great strides have been made in getting the word out. But we 
still need to do more. These agencies are trying to inform 
parents before the tragedy happens. The NIH and specifically 
the NICHD are conducting research on potential causes of SIDS. 
We know the answer is out there, we just need to find it.
    We urge you to continue to fund the third Sudden Infant 
Death Syndrome five year research plan at the National 
Institute of Child Health and Human Development, continue to 
fund the National SIDS and Infant Death Program Support Center 
at the MCHB, and continue to fund the CDC, which is working to 
provide a nationwide protocol for dealing with Sudden Infant 
Death Syndrome death scene protocol.
    And most importantly, provide $1.137 billion to the NICHD. 
This represents a 16.5 percent increase over fiscal year 2001 
as part of the overall request to double the National 
Institutes of Health budget by the year 2003.
    It may sound like we're asking for a lot. Instead of 
sitting here asking for this, I'd rather be here telling you 
that no more parents have to suffer what we have and continue 
to suffer through. I wish I could tell you that no more parents 
have to look at the empty cribs and empty strollers and wonder 
why. I wish I could tell you that we found out why and thank 
you for all your help. I wish I could tell you that our son was 
doing great, and really enjoyed touring Washington, but I 
can't.
    On January 5th, 2001, Chairman Young officially announced 
the Appropriations Subcommittee Chairmen for the 107th 
Congress. He announced that Congressman Ralph Regula would be 
the new Chairman of the Labor, Health, Human Services, 
Education and Related Agencies Subcommittee. I'm sure that 
there was congratulations and maybe even celebration.
    On January 5th, 2001, Mark, Nicole and Madeline Smith went 
outside and let balloons go into the sky and sang happy 
birthday. It would have been Chandler's fourth, he would have 
been four years old.
    Mrs. Smith. On behalf of the thousands of families who have 
been devastated by the loss of a baby to SIDS, and the millions 
of concerned and frightened new parents each year, we thank you 
and this Subcommittee for its past leadership and support, and 
encourage you to help us to find an answer.
    If you need any additional information or have any 
questions, please do not hesitate to contact us.
    [The information follows:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
    Mr. Regula. Questions?
    You did mention that it's been reduced 40 percent. What has 
caused the reduction?
    Mr. Smith. The Back To Sleep campaign, they have been 
getting the word out. For years, parents were putting their 
babies to sleep on their stomachs. Nicole was a stomach baby, I 
was a stomach baby. They've found through research, and they're 
not sure exactly what has caused it, but by sleeping your child 
on their back, it has reduced the risk of dying from SIDS.
    But that's not--it's starting to level off. What they're 
finding is that it's still occurring and they don't know why. 
There's a number of other things that they say to reduce the 
risk, don't overbundle your baby, not too warm, smoking in the 
household, but they still don't know why.
    Mr. Regula. I think you told me that you had an autopsy, 
and there was just no evidence that you could find that would 
give you any clue.
    Mr. Smith. None whatsoever. In fact, when we went to the 
emergency room and they brought Chandler to us, he looked 
perfect. We went into the emergency room, we actually got to 
see the EMTs and all the doctors working on him. There was a 
handful of people in there, and they all looked at us. None of 
them could really look us in the eye, but they said they worked 
so hard to try to save him. Because when they found him, he 
looked perfect. He looked like he had maybe just stopped 
breathing, something had happened. There was no sign, no 
evidence that anything was going to occur or had occurred. And 
there was no way to stop it.
    Mr. Regula. Well, thank you for coming.
    Mr. Smith. Thank you very much.
    Mr. Regula. Your efforts will hopefully help others in the 
future to avoid this tragedy.
                              ----------                               

                                          Thursday, March 15, 2001.

             DEPARTMENT OF LABOR--WORKER COMPENSATION CLAIM


                                WITNESS

MIKAL WATTS, ATTORNEY
    Mr. Regula. Our next witness is Dr. Mikal Watts. He's 
testifying on behalf of his client, Lee Whitney.
    Mr. Watts. Mr. Chairman, members of the Subcommittee, my 
name is Mikal Watts. I'm a trial lawyer from Texas. Primarily I 
spend my time doing product liability litigation, recently 
against Firestone. But when I'm not doing so--sorry I brought 
that up----
    [Laughter.]
    Mr. Watts. When I'm not doing so, I work to represent the 
interests of injured workers. One of those workers is Lee 
Whitley, on whose behalf I am here to testify today. Mr. 
Whitley wanted to be here but was unable to, because of health 
problems that he has.
    Mr. Whitley is an individual who was 33 years old, he was a 
certified airframe and power plant mechanic, and he was 
recruited by the Dee Howard Aviation Company in San Antonio, 
Texas, to work on large aircraft. He was in the nose of a UPS 
airplane, getting it ready for production, and was asked to 
basically rustproof it with a chemical known as Procyon. 
Procyon is under the MSDS sheets basically a mixture of naphtha 
and benzene.
    This gentleman knew that he was going to be in an enclosed 
area. He went to his employer. He asked for a respirator, he 
was not given one. He was told that it was unapproved. He went 
to the restricted materials area where the filters were, and he 
asked for filters, and he was told he was unapproved. He was 
told to get back into the nose of the DC-8 aircraft that he was 
working on, where he spent the next eight hours, fumigating 
himself and his lungs with a mixture of naphtha and benzene.
    The inevitable occurred. Within a few weeks, he began to 
have severely limited lung capacity. He now breathes with 35 
percent of his original capacity. Six months after, because of 
his disability, he was fired by the Dee Howard Aviation 
Company.
    OSHA came in. OSHA made an initial finding that Dee Howard 
Aviation Company willfully violated some of the guidelines and 
issued stringent fines. The FAA then stepped in and asserted 
jurisdiction over this. OSHA stepped back and the fines were 
withdrawn.
    The reason I'm here is that I believe that the concept of 
worker safety is critical. Accidental injuries in this country 
is one of the most expensive types of injuries or disease known 
to mankind in terms of societal costs. There are three ways to 
prevent that in the workplace. One is through education, two is 
through regulation, and three is through litigation.
    Now, Mr. Whitley's problem is that he lives in the State of 
Texas, where the litigation, frankly, he has no cause of 
action, because when you subscribe to the Texas Workers 
Compensation system, you give up your right to bring claims. 
And that's not why I'm here. The reason that I am here on 
behalf of Mr. Whitley is not to ask you to federalize workers 
compensation. I'm asking with respect to the other two prongs 
of that, and that's education and regulation.
    Mr. Whitley's case is an example of two things. Number one, 
when you all are making your appropriations recommendations, 
and your budgets, the concept of education and spending dollars 
so that people know that it is not acceptable from a standpoint 
of societal costs to allow somebody to go into the nose of an 
airplane and to be fumigated with naphtha and benzene is 
important, and those dollars save dollars on the back end.
    Secondly, this case, and this is the first time that I've 
seen it, shows that when the appropriations are made with 
respect to OSHA, there is evidently a problem with respect to 
the authority that the OSHA has with the FAA and some of the 
other administrative agencies. I think that that needs to be 
looked at with respect to the issue of how the dollars are 
spent and what conditions are put on those dollars when we're 
spending a large amount of money trying to protect workers in 
this country from being injured. Because the bottom line is 
that you can pay on the front end in terms of education and 
regulation, or you're going to pay on the back end from the 
standpoint of supporting unproductive members of society who 
are needlessly and permanently disabled, as Mr. Whitley was.
    I thank you for your time. I'm going to give back some of 
it, and I'm happy to answer any questions.
    [The information follows:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
    Mr. Regula. Thank you.
    You're saying that there should be a clear, or some 
specificity as to the relationship on the Federal agencies, 
i.e., OSHA and FAA?
    Mr. Watts. I agree with exactly what you said. And frankly, 
before this case, I had never seen a problem with the overlap. 
That's one of the reasons that Mr. Whitley asked me to come 
testify before you.
    Mr. Regula. Very well. Thank you for taking the time to 
come here.
                              ----------                              


                                          Thursday, March 15, 2001.

                            AO FOX MEMORIAL


                               WITNESSES

JOHN R. REMILLARD, PRESIDENT, A.O. FOX MEMORIAL HOSPITAL, ONEONTA, NEW 
    YORK
EDWIN PHILBIN, M.D., CHIEF OF CARDIOLOGY, ALBANY MEDICAL CENTER, 
    ALBANY, NEW YORK
    Mr. Regula. Our next witness is John Remillard, President, 
A.O. Fox Memorial Hospital in Oneonta, New York. Welcome, thank 
you for coming.
    Mr. Remillard. Thank you. Good morning, Chairman Regula and 
distinguished members of the Committee.
    I'm John Remillard, President of Fox Hospital in Oneonta, 
New York. With me this morning is Dr. Edwin Philbin, Chief of 
Cardiology, from the Albany Medical Center in Albany, New York. 
Dr. Philbin has done extensive research on cardiac services for 
patients living in rural areas.
    I have requested the opportunity to testify before the 
Labor HHS Appropriations Subcommittee to discuss in brevity the 
issue of heart disease, mental health and the efforts of Fox 
Hospital to provide the highest quality of care to the rural 
populations that we serve. We recognize that heart disease is 
the leading cause of death in the United States. We also 
acknowledge that mental health has for a long time been a 
silent issue, held in secrecy by the family of the patients who 
suffer from mental disorders. However, changing attitudes have 
helped end the silence.
    As a member of the hospital community, we are working with 
families to provide high quality mental health services to 
these patients. Fox Hospital is a full service community 
hospital situated in Oneonta, New York. It's the only hospital 
in the city of Oneonta, and serves as the referral facility for 
many of the smaller hospitals in the region. Fox has been 
designated by the Federal Government as a rural referral center 
and a sole community provider.
    As such, Fox has a responsibility to provide a complete 
array of services for the community. To do so, Fox in 1998 
entered into an affiliation with Albany Medical Center, the 
only academic medical center in our region. Through this 
affiliation, Fox Hospital and Albany Medical Center jointly 
established a cancer center in May 2000.
    Similar to the need to provide outstanding cancer care for 
our community, we must provide for our community a very strong 
cardiology program. Fox and Albany Medical Center have come 
together to develop a heart institute. The heart institute 
would merge Oneonta based cardiology services with those of 
Albany Medical Center's. The institute would be physically 
located in Oneonta, and would provide a seamless link to Albany 
Medical Center's facilities, which in addition to cardiac 
surgery now includes a heart transplant program.
    Fox-Albany Medical Center's relationship will ensure that 
the rural residents of Otsego, Delaware and Schoharie counties 
receive cardiac care with an integrated system that includes 
all levels and all components of cardiac care. Fox-Albany 
Medical Center Heart Institute would provide routine care on 
site in Oneonta. Patients would only need to travel to Albany 
Medical Center for very high-end services.
    The creation of a heart institute will require substantial 
funds. The preliminary budget to establish an institute is $1.5 
million. This would cover the cost of construction, 
furnishings, information systems and diagnostic equipment.
    Additionally, I would like to bring to your attention our 
need for assistance to establish an outpatient day treatment 
center for adolescent patients discharged from our inpatient 
mental health units. We have been providing mental health 
services for the community since 1990. Fox opened a 16 bed 
adult psych unit and a 24 hour crisis intervention program to 
serve a three county region. In 1998, we opened a 12 bed 
adolescent psychiatric unit. All these services have proven to 
be invaluable to our community.
    The problem we are now facing relates to the lack of 
services and facilities for adolescents when they are 
discharged from the hospital. In these instances, the patients 
are ready to leave the acute care hospital setting, but are not 
quite ready to return home. They need what we term an 
intermediate level of service. Such services can be provided in 
an outpatient treatment facility.
    We have found that a substantial number of our adolescent 
patients would benefit from these services, but they are not 
available in our region. The proposed day treatment facility 
would provide adolescents with daily mental health services 
that are integrated into their educational experience. 
Adolescents who would use this service would most likely be 
suffering from depression, suicidality, behavior disorder and 
adjustment disorders.
    In order to launch this program, a new facility would have 
to be built adjacent to the hospital. The estimated budget is 
$1 million. This would be used for construction, furnishings 
and equipment.
    In closing, our total request is $2.5 million. Thank you 
for your time and consideration.
    [The information follows:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
    Mr. Regula. Thank you. Is this a non-profit hospital, or is 
it associated with the community?
    Mr. Remillard. We're a not for profit hospital, have been 
in existence for 100 years. And as I said, it's a joint project 
with Albany Medical Center, our partner. Albany Medical Center 
is 80 miles away from us.
    Mr. Regula. Do you get any outside financing, or is it just 
operated on the stream of revenues?
    Mr. Remillard. Stream of revenues, Medicare, Medicaid, 
insurance companies.
    Mr. Regula. Any other questions?
    Mr. Peterson. How many acute care beds do you have?
    Mr. Remillard. One hundred twenty-eight.
    Mr. Peterson. What's your occupancy?
    Mr. Remillard. Our occupancy is 65 percent in the acute.
    Mr. Peterson. You're asking for a specific appropriation to 
help you accomplish these goals.
    Mr. Remillard. These two projects, yes.
    Mr. Peterson. Don't we need to look at the entire system 
and the disparity between urban and rural payments, and get the 
floor that rural payments get up to where they can somehow be 
competitive to have the kind of services that are needed in 
rural areas? Would you support that approach?
    Mr. Remillard. Absolutely. If we had a funding stream that 
allowed us to make investments for these new projects, I 
wouldn't have to be here.
    Mr. Peterson. The Medicare system in this country is 
Medicare Plus for urban America and Medicare Light for rural 
America. The disparity is almost 100 percent, when you talk 
about payment for managed care. That should be unacceptable, in 
my view. Rural America needs to stand up and say, we don't want 
Medicare Light any more, we want at least Medicare Equal.
    Mr. Remillard. I totally agree with you. Until we have 
that, I guess I'll have to come here to seek funding. 
[Laughter.]
    Mr. Peterson. Well, support me, too.
    Mr. Regula. Mr. Peterson, you're absolutely right, it's a 
Ways and Means issue, as you know. I have the same problem in 
my district.
    Thank you for coming.
    Mr. Remillard. Thank you, Chairman.
    Mr. Regula. For the members, this is the only vote today. 
It's on the Small Business Paperwork Relief Act--I'm sorry, Mr. 
Sherwood, go ahead. We've got a couple of minutes.
    Mr. Sherwood. I just wanted to comment that Oneonta is 
about 80 miles from where I live and I'm very familiar with the 
community. I'm very familiar with the need for health care 
facilities in northeastern Pennsylvania and the southern tier 
of New York State.
    So I was listening carefully.
    Mr. Remillard. Thank you.
    Mr. Regula. Mr. Kennedy.
    Mr. Kennedy. I might just also comment, in terms of the 
reintegration of these kids into their school environment, what 
is there now in terms of the schools to help these kids get 
reintegrated? Are there any facilities within the schools?
    Mr. Remillard. There's very little. The local GOSEES 
program has a few supports. But what actually happens is, we 
have adolescents in our mental health unit, they've been there 
a couple of weeks, their acute episode is over, they could go 
to another area. They end up staying, in some instances it's 
five, six, seven, eight, nine months in our mental health unit. 
What they need is where they could go every day, have an 
education experience and oversight of their mental illness.
    Mr. Kennedy. Absolutely.
    Mr. Remillard. That's what we're looking to create, and 
there's none in our area.
    Mr. Kennedy. Well, Mr. Chairman, again, following on my 
question the other day, we need to get some of these treatment 
facilities integrated with the schools. I hope we can do that.
    Mr. Remillard. Our proposed program is a partnership with 
the local school. They would provide the teachers and we would 
provide the medical component.
    Mr. Kennedy. Thank you.
    Mr. Regula. Thank you, Mr. Kennedy. An interesting concept.
    We're going to recess for approximately 20 minutes to vote, 
then we'll reconvene.
    [Recess.]
                              ----------                              

                                          Thursday, March 15, 2001.

                   HEPATITIS FOUNDATION INTERNATIONAL


                                WITNESS

THELMA KING THIEL, CHAIRWOMAN AND CEO, THE HEPATITIS FOUNDATION 
    INTERNATIONAL
    Mr. Regula. Okay, that's the last vote, so we won't be 
disturbed. We'll continue the hearing and our next witness is 
Thelma King Thiel.
    Mr. Pascrell. I'd like to begin by thanking Chairman 
Regula. We've worked together on many issues, diverse, I'd say.
    Thank you for giving us the opportunity today, and me the 
opportunity to introduce Thelma Thiel, who's Chairwoman and CEO 
of the Hepatitis Foundation International. Thelma is a 
constituent of mine, Mr. Chairman, from Cedar Grove, New 
Jersey. I've met with her numerous times in both New Jersey and 
Washington.
    She's a leading advocate in the battle against hepatitis 
and other liver diseases for over 25 years. Approximately 4 
million Americans are infected with hepatitis C virus. 
Unfortunately, the majority of the infected individuals are 
unaware that they have contracted the disease.
    Each year, an estimated 10,000 people die from hepatitis C. 
The Centers for Disease Control and Prevention, CDC, estimates 
that the death rate will triple by 2010 unless there is 
additional research, education and effective health 
interventions.
    As a veteran, this is a health epidemic that I have been 
following very closely. In my district and nationwide, the 
veterans community has been disproportionately affected by 
hepatitis C. I'm not going to get into it now, Mr. Chairman, 
but it's something that I'm sure you're aware of, and we need 
to do a heck of a lot of research on. It's a crisis.
    Mr. Regula. Is there a reason, is there a connection?
    Mr. Pascrell. All service connected, for the most part, 
yes, sir. All service connected.
    Mr. Regula. Is the VA doing anything on it, do you know?
    Mr. Pascrell. They're trying to, with the limited resources 
for that area. They are trying, to the best of their ability, I 
must say that.
    Mr. Regula. How about the military services, active duty?
    Mr. Pascrell. We're talking about prevention here, Mr. 
Chairman. You've been in the forefront of many preventive 
measures in many areas. This is something that we're only going 
to attack by beefing up the preventive aspects of this thing, 
or else it's going to really blow out of proportion, as I see 
it.
    Mr. Regula. Okay.
    Mr. Pascrell. I appreciate the Subcommittee's consideration 
of Thelma's testimony today. I look forward to working with you 
to increase support for hepatitis related programs within the 
Public Health Service.
    I also look forward to helping Thelma further her cause to 
make the lives of people suffering from hepatitis C and their 
families better. I hope we can all work together to stop this 
disease. Thank you again, Mr. Chairman, for hearing Thelma's 
testimony.
    Mr. Regula. Thank you for bringing her.
    Ms. Thiel. Thank you, Mr. Pascrell. I really appreciate 
your coming in.
    Mr. Chairman and members of the Committee, I'm Thelma King 
Thiel, Chairman and CEO of the Hepatitis Foundation 
International. I'm generally known as the Liver Lady. 
[Laughter.]
    I have presented written testimony for your consideration, 
but I just wanted to share some comments with you today. I have 
presented testimony before this Committee many, many times over 
the past 30 years, since I lost a four year old infant to a 
very fatal liver disease.
    And I've seen some exciting progress made in treating and 
preventing liver disease, and especially viral hepatitis. 
Vaccinations are now available to prevent hepatitis A and B. 
Numerous medications have been developed to treat those who are 
infected with two of the important viral hepatitis. And the 
miracle of transportation is providing renewed life for many 
victims of liver diseases.
    But as a nurse and a health educator, I believe that we 
have really missed our mark when it comes to preventing these 
preventable diseases. Safe and effective hepatitis B vaccines 
have been available since the early 1980s. They were not and 
are not being made available to those at high risk of being 
infected, those who attend STD clinics, drug rehab centers and 
those who are incarcerated. The current pool of 1.2 million 
hepatitis B infected individuals, plus an estimated 250,000 new 
cases each year, demonstrates our failure to deal effectively 
with this preventable disease.
    Every day, frightened individuals call our hotline, fearful 
of dying from their newly identified hepatitis C infection. 
Ignorance about its transmission and about the serious 
consequences of participating in high risk behaviors that 
expose them to these treacherous diseases have contributed to 
the human suffering and enormous economic burden to our Nation.
    Billions of dollars are being spent on treatments for 
hepatitis with limited success and on transplants that provide 
a few fortunate individuals with several more years of life. 
Each day, the number of Americans suffering from end stage 
liver disease grows. Lack of education to help individuals 
assess their own risk behaviors for being infected, lack of 
awareness of risk behaviors that they may have participated in 
10, 20, or 30 years ago, may have exposed them to hepatitis C. 
And a lack of knowledge that consuming alcohol can dramatically 
accelerate the progression of hepatitis C. These are all 
compounding our problem.
    And of even greater importance is the lack of effective 
teaching tools and information to motivate the most vulnerable 
younger generation to avoid risk behaviors and take 
responsibility for their own health through understanding the 
importance of the liver and ways to protect it. We have been 
asking our children to make healthy lifestyle choices, but we 
as their protectors have not been providing them with the 
information so they can do that.
    Prevention saves lives. Prevention is far cheaper than 
treating disease, caring for chronically infected and putting 
new livers into individuals to replace their damaged liver 
through ignorance, neglect or abuse. And we can save lives 
today through preventive education and counseling provided 
through collaboration and cooperative agreements with the 
Centers for Disease Control and schools of public health, by 
providing materials and videos that have been developed in 
conjunction with Government, by providing more training of 
teachers, health care providers and public health personnel, 
and working with the Head Start programs to give young children 
a heads up on protecting their bodies.
    If we are to bring hepatitis and other blood-borne 
pathogens under control, we must mount a major attack on 
substance abuse in our country. We must invest heavily in 
effective preventive education, beginning with preschoolers, 
and continuing through secondary schools. We must invest in 
research to develop better treatments and more vaccines, tostop 
these viruses in their tracks. We must provide counseling to those who 
are infected, to encourage them to take responsibility for their own 
health care and to participate in their own health.
    Let us make a significant investment in the health of our 
Nation through mechanisms that are in place but lack the 
funding to implement programs that have proven their worth.
    I thank you for giving me this time. I would be glad to 
answer any questions. As far as the VA goes, we've been working 
with the VA to try to get them to tie into more of the 
wonderful preventive education programs that we have developed, 
with a series of videos that we developed in cooperation with 
the Centers for Disease Control, and we're working very closely 
with them to provide those training videos to their, not only 
to their staff, but to their constituents.
    [The information follows:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


 
    Mr. Regula. Well, that's wonderful that you're dedicating 
so much of your time to this. There will be a lot of lives 
saved because of your efforts.
    Are the schools doing anything in education programs?
    Ms. Thiel. Unfortunately, the liver is a non-complaining 
organ. As I mentioned, I was probably one of the first people 
that came down here to present testimony on behalf of the 
liver. I've been known as the voice of the liver.
    The liver is a non-complaining organ and had received very 
little attention, very little research, many, many years ago. 
So we really had an uphill battle. And again, if I were to ask 
the people in this room if they knew what hepatitis really did 
to their bodies, they wouldn't be able to answer it, other than 
say yellow eyes. If you asked them what cirrhosis is, they 
probably would say, well, if you drink too much you get 
something that's called cirrhosis. And maybe it's a filter. But 
that's all they know.
    Mr. Regula. Is hepatitis a virus?
    Ms. Thiel. It's a virus that attacks liver cells. And liver 
cells are the employees in your own personal power plant. And 
when you're killing them with viruses, drugs or alcohol, you're 
reducing the good, healthy cells, so the first thing that 
happens is your power plant shuts down and you are fatigued. 
But you don't show any other signs that you're infected.
    So we have a real problem of motivating people to realize 
that they can be unknowingly damaging their liver and causing 
permanent damage to it, until it's almost at the point of no 
return. So we really have a tremendous program or effort to try 
to alert people to the importance of the liver, and why they 
need to get vaccinated, why they need to protect themselves.
    Mr. Regula. Questions?
    Mr. Peterson. What percentage of hepatitis is preventable?
    Ms. Thiel. All of it.
    Mr. Peterson. All of it?
    Ms. Thiel. All of it.
    Mr. Peterson. Do you have data on drug use contributing to 
liver disease?
    Ms. Thiel. For hepatitis C, the CDC claims that about 80 
percent of hepatitis C is related to drug abuse.
    Mr. Peterson. So those who are arguing for legalization 
don't understand what drugs do to our liver?
    Ms. Thiel. Well, we don't think they know what their liver 
does, either. That's why we need to educate them.
    Mr. Peterson. Do you have good data on that?
    Ms. Thiel. Yes, there's a lot of data. CDC has it.
    Mr. Peterson. Thank you.
    Mr. Regula. What's the difference between A and B?
    Ms. Thiel. There's A, B, C, D and E and they even thought 
there was a G, but they've dropped G at this point. One of the 
easy ways to remember is, remember when you were a kid and you 
learned that A, E, I, O, U were vowels? Well, A and E hepatitis 
viruses are vowels that are found in the bowels. All the others 
are in blood. So that kind of gets you straightened up.
    But B and C are the ones that we're really concerned about 
now as far as blood-borne pathogens. And B is easily sexually 
transmitted, whereas C is not so easily transmitted, but they 
can be transmitted through IV drugs, passing the straw when 
they're snorting cocaine, even sharing a razor or toothbrush 
with somebody who is infected. You know, you're rubbing that 
toothbrush with that virus into your gums.
    Innocent things like that, making sure that the dental 
equipment and the endoscopy instruments are properly 
sterilized. We have some unknown quantities there, because 
again, people don't react or get real sick initially when they 
are infected with hepatitis B or C, there may be a period of 
time before they are identified. And going back and trying to 
identify that risk behavior is difficult.
    Mr. Regula. Thank you very much.
    Mr. Peterson. Can I ask one additional question?
    Mr. Regula. Yes, certainly.
    Mr. Peterson. What percentage of the population has 
hepatitis? Or what's the numbers?
    Ms. Thiel. That's a good question, 1.2 million people in 
the United States are carriers of hepatitis B. Two hundred and 
fifty thousand new cases a year, estimated. And with hepatitis 
C, there are currently 2.7 million individuals that are 
estimated to be chronically infected with hepatitis C.
    So we have an enormous problem. And they're walking around 
not realizing that they are infected, because they have no 
signs or symptoms. So we have an enormous problem with 
education, trying to get it out there. We need to get into the 
schools, we need to give kids information so that they can 
avoid those risk behaviors. We've been saying, you know, adopt 
healthy lifestyle behaviors, and they don't know what we're 
talking about. And unfortunately, the teachers don't know, and 
their parents don't know.
    Mr. Peterson. Is there a low cost screening program for 
hepatitis?
    Ms. Thiel. There are screening programs, but as I 
understand it, it's very, very costly to do screening programs. 
It's much more effective if you can get people to self-
identify. Again, it's difficult to get them to say, well, maybe 
20 years ago or 30 years ago, I may have experimented with IV 
drugs once, or had a tattoo, and that's triggering your thought 
that you need to ask to be tested. Not a routine part of the 
testing.
    Mr. Peterson. Tattoos?
    Ms. Thiel. Anything that breaks the skin that has been used 
by another person that might be infected can introduce that 
virus into the body. So body piecing and tattooing are 
potential risks.
    Mr. Pascrell. Mr. Chairman, this has become a growing 
problem with firefighters in America. We're attempting to 
address it in some of the legislation. But the magnitude of 
10,000 people dying per year from hepatitis C alone gives us an 
idea, a good picture of what we're facing.
    Thelma literally has saved lives in the work that she's 
done, and established a front against it, and we need to 
support that, Mr. Chairman, as you know.
    Ms. Thiel. Thank you.
    Mr. Regula. Thank you, Bill, for bringing this witness. 
Continue your efforts.
    Ms. Thiel. Oh, I will. [Laughter.]
                              ----------                              

                                          Thursday, March 15, 2001.

                           CENTER POINT, INC.


                                WITNESS

SUSHMA D. TAYLOR, CEO, CENTER POINT, INC.
    Mr. Regula. Our next witness is Dr. Sushma Taylor. You're 
going to get introduced by two people, so you'll be well 
introduced. First is our colleague, Mrs. Pelosi and then Mrs. 
Woolsey.
    Mrs. Pelosi. Mr. Chairman, thank you. As our guests settle 
in there, I just wanted to thank you for having Sushma Taylor, 
Chief Executive Officer of Center Point, Inc., as a witness 
today. I'm sorry I could not be with you the whole time, but 
we're organizing the Intelligence Committee this week. As soon 
as we get that done, then I'll be faithful to my 
responsibilities here. You know how it is, Mr. Chairman.
    Mr. Regula. We'll forgive you. It's important to have 
intelligence. [Laughter.]
    Mrs. Pelosi. Thank you, Mr. Chairman.
    Mr. Regula. Tell us what Center Point, Inc. is.
    Mrs. Pelosi. It's a wonderful thing, Mr. Chairman. And in 
welcoming Sushma Taylor, we are joined by our distinguished 
colleague, Congresswoman Lynn Woolsey, who represents Marin 
County, among other places, in Congress. That is where Center 
Point is domiciled.
    And Mr. Chairman, since you asked, Center Point is a non-
profit, community-based social rehabilitation service provider, 
based on San Rafael, California. For the past 30 years, Center 
Point has provided affordable, comprehensive drug and alcohol 
treatment and a wide array of complementary services to high 
risk families, adults and youth in Marin County and the San 
Francisco Bay area.
    Center Point views drug addiction as a chronic disease that 
is treatable through a comprehensive range of services, 
including substance abuse treatment, mental health and 
vocational rehabilitation services, linkages to primary medical 
care, transitional housing and supportive services, emergency 
homeless shelters and related services. A big order, Mr. 
Chairman, and not unlike the part of our agenda of our 
distinguished colleagues, Congresswoman Woolsey.
    Over 5,000 clients are served each year through programs 
targeting high risk groups and serve a wide cross section of 
economically and socially dislocated individuals, including 
substance abusers, the homeless individuals and severe and 
persistent mental illness, persons with HIV and AIDS, and those 
with other chronic health problems.
    That's all to say, Mr. Chairman, that Sushma Taylor is on 
the front line on some of these very important issues that 
confront our country. I'm pleased to join my colleague, 
Congresswoman Lynn Woolsey, in presenting Sushma Taylor to the 
Committee, and in doing so, thank the Committee for its 
recognition of Center Point and its good work in its past 
funding.
    With that, Mr. Chairman, I yield back, so that we can hear 
from our distinguished colleague.
    Mr. Regula. Mrs. Woolsey, would you like to make any 
comments?
    Mrs. Woolsey. Well, now, do you think I don't? [Laughter.]
    Mr. Regula. We're happy to hear from you.
    Mrs. Woolsey. Thank you, Mr. Chairman, for inviting Sushma 
Taylor to be here and for inviting me to make remarks. I'll 
turn this all into me, of course, because I'm so proud of 
Sushma and her program in my district.
    Center Point provides a wide range of treatment and 
rehabilitation services to very high risk families and to 
individuals as well. What makes Center Point so special is that 
they focus on rehabilitating the whole person. They don't just 
do a piece of it. They don't just solve one problem, a single 
problem, they look at the whole person. Center Point provides 
social, educational, vocational, medical, psychological, 
housing and rehabilitation services. So there's no place for 
their client to slip through the cracks.
    And you have, this Committee has been very generous in 
helping Center Point in the past. Believe me when I tell you, 
our monies have done well in my district. Center Point and Dr. 
Taylor change lives.
    Mr. Regula. Thank you. Dr. Taylor.
    Dr. Taylor. Good morning. It is a privilege to give 
testimony, but even more so, it is an honor to be recognized so 
eloquently by Mrs. Pelosi and Mrs. Woolsey, two women who 
champion the causes of those who are underprivileged, and those 
who do not have a voice, and those who are not here before you.
    Mr. Chairman, welcome to the committee. I want to applaud 
the task you have taken on; it is diverse, the challenges are 
many, and the conflicts are ever emerging. And members of the 
committee, I know that you will work diligently in affording 
everybody who needs your assistance and your generosity full 
measure.
    As my distinguished Congresswomen have said, we are located 
in several sites in California. We are also in five California 
prisons where we are providing treatment behind the walls as a 
prelude to release into the communities. We believe that 
because of the problems of addiction, which include inadequate 
interpersonal skills, poor education, and few marketable 
vocational skills, I think our job, in addition to promoting 
abstinence, is to treat the whole person.
    You have heard from the earlier speaker about Hepatitis C. 
It is so prevalent in our population. We have to do something 
about it, and we are through our work with the Center for 
Disease Control and Prevention.
    This year at Center Point we also enhanced our vocational 
services through a competitive welfare-to-work grant from the 
Department of Labor. Those women who were formerly on TANF were 
successful in developing marketable skills and in obtaining and 
keeping jobs and becoming a cadre of new taxpayers.
    While we at Center Point appreciate the Department of 
Labor's previous recognition of barriers of employment for TANF 
recipients, we are asking that this subcommittee encourage the 
Department of Labor to recognize that substance abuse itself is 
a major barrier to employment, and that untreated addicted 
individuals are not in the labor force but yet can be.
    We hope that the committee will work with SAMHSA to infuse 
vocational services within all substance abuse treatment 
programs, because treatment programs are eager to provide the 
vocational skills training and job placement. These treated 
individuals can be trained into a formidable workforce because 
they are industrious, they are bright, they are capable, 
particularly when we infuse treatment and vocational training 
simultaneously.
    In November, Mr. Chairman and members of the committee, the 
California voters passed Proposition 36, a post-conviction 
program that will assign nonviolent offenders to community 
treatment in lieu of jail or prison. California voters are 
estimating that 36,000 individuals could be diverted to an 
array of residential and outpatient treatment services. A 
current barrier to the expansion of services required by 
Proposition 36 is the lack of physical space in which to house 
additional or expanded programs. Center Point asks that this 
committee give full and fair consideration to capital funding 
which could allow the expansion of facilities and program 
spaces not only in California, but elsewhere in hard-hit areas 
of the country.
    Further, we believe that Congress should make adolescent 
residential treatment, which was authorized under the 
Children's Health Care Act of 2000, at a level of $40,000,000 a 
priority for fiscal year 2000. Many of our Nation's young 
people are troubled. They need our help and our attention. 
Center Point provides adolescent services which are recognized 
in California as a viable option for troubled youth because of 
the comprehensive focus in which we engage families and provide 
critical active care and ongoing support. We respectfully 
request the subcommittee fund the substance abuse treatment 
services for the Children and Adolescents Program.
    Finally, I would like to applaud the Administration for 
plans to ask Congress for $111,000,000 increase for substance 
abuse treatment in fiscal year 2002. We urge that funds be 
focused in areas where there is an acute or an emerging public 
health threat, such as the methamphetamine problems in western 
States. We urge that venture capital funds be allocated so that 
treatment capacity can be expanded quickly in order to meet 
this new emerging demand.
    ONDCP has estimated that illicit drug expenditures in the 
year 2000 cost this country $62,000,000,000. Our treatment and 
prevention efforts currently are only $3,100,000,000. Federal 
support for treatment is needed because, unless we reverse the 
economic consequences of untreated addiction, we will not be 
able to reclaim the gains of treatment. Investment in treatment 
pays seven-fold in dividends, in reclaiming lives and in 
building communities.
    I thank you for your generosity in previous years and for 
the generosity in future years, Mr. Chairman and members of the 
committee.
    [The information follows:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
    Mr. Regula. Thank you.
    Questions? Yes?
    Mr. Peterson. I guess I was interested in more details. You 
were talking about treatment plus training. What type of 
training programs are you offering?
    Dr. Taylor. We are doing vocational training in several 
trades--maintenance, carpentry, building trades, computer 
technology, clerical workers, retail workers.
    Mr. Peterson. Are you having good placement records?
    Dr. Taylor. Very much so, sir. We have a job data bank of 
200 employers who now call us when there is a vacancy. We do 
not have to place our people. The average time it takes for us 
to place our people in jobs is from between seven to ten days.
    Mr. Peterson. It is my view that something we have lost in 
this country is that the military used to be our number one 
training for poor people. When we had the army where you had to 
serve, poor people would stay in an extra two or three years to 
get the training they wanted. So many of our skilled workers 
learned it in the military. That has all changed and we have 
never replaced it. I think we highly undervalue skilled 
training in this country. And I am interested, this is the 
first time I have seen where it has been combined with 
treatment. But it certainly makes a lot of sense.
    Dr. Taylor. Thank you for those comments. My son is in the 
United States Marine Corps and I know he is getting training. 
[Laughter.]
    Mr. Peterson. Yes. But it used to be the training grounds 
of poor young people. They went in for four or five years to 
get their education and then they went back out into the 
workforce.
    Dr. Taylor. Yes, sir. I believe there should be mandatory 
skills training for all young people.
    Mr. Peterson. If they are not going the academic track, 
they should be in the skill track.
    Dr. Taylor. Yes, sir.
    Mr. Peterson. And this country is a long way from doing 
that.
    Dr. Taylor. I agree.
    Mr. Regula. Ms. Pelosi?
    Ms. Pelosi. Briefly, Mr. Chairman. My question is similar 
to our colleague's. I was going to ask Dr. Taylor why it is 
important to offer vocational services as a component of 
substance abuse treatment. Did you have anything further you 
wanted to put in the record in that regard?
    Dr. Taylor. Thank you, Ms. Pelosi. Just to say that we have 
a natural training ground, if you will, to infuse vocational 
services, because unless we give them the job skills they will 
not be able to deal with economic self-sufficiency. We need to 
be able to give them a marketable skill so that instead of 
becoming tax users, they become taxpayers.
    Ms. Pelosi. And if you could just comment on the importance 
of after-care or community support.
    Dr. Taylor. For most people, and particularly young 
adolescents, we know that our kids are troubled because they 
feel that they are not able to connect with most adults and 
most communities. When we do treatment for adolescents in our 
group homes, we do not want to send them back into the same 
environment. We believe the after-care support is critical not 
only to provide support for the family, but also for the 
individuals, and to engage in building more ties to the 
community, such as with church groups, with civic 
responsibility, with vocational and rehabilitation services, as 
well as recreational.
    Ms. Pelosi. Now you see why Congresswoman Woolsey and I are 
so proud of Dr. Sushma Taylor's work at Center Point. Thank 
you, Mr. Chairman.
    Mr. Regula. Thank you. I am curious, are you a nonprofit?
    Dr. Taylor. Yes, sir.
    Mr. Regula. And your source of funding is, other than 
Federal?
    Dr. Taylor. Well, it is Federal, State, fee-for-service, 
third party reimbursement, private foundations, corporations, 
Longshoremen's Union, other self-insured individuals, parents.
    Mr. Regula. Interesting. Thank you very much for an 
interesting story.
    Dr. Taylor. Thank you, sir.
    Mrs. Woolsey, Ms. Pelosi, thank you very much.
    Ms. Pelosi. Thank you.
                              ----------                              

                                          Thursday, March 15, 2001.

                   THE AMERICAN SOCIETY OF NEPHROLOGY


                                WITNESS

DR. ROBERT J. ALPERN, DEAN OF SOUTH WESTERN MEDICAL SCHOOL, UNIVERSITY 
    OF TEXAS
    Mr. Regula. Our next witness is Dr. Robert Alpern, Dean of 
South Western Medical School, University of Texas.
    Dr. Alpern. Thank you, Chairman Regula and members of the 
subcommittee. I am Dr. Robert Alpern, President of the American 
Society of Nephrology. I am here today on behalf of 7,000 
members of the American Society of Nephrology and millions of 
patients with kidney disease.
    We are requesting from the committee a one-time increase in 
kidney disease research funding of $30,000,000. We believe this 
is necessary to bring kidney funding in line with that of other 
comparable diseases, like cancer, diabetes, and AIDS, and to 
allow us to address the expected coming onslaught of kidney 
disease in this country over the next ten years.
    Let me begin by highlighting some facts as they relate to 
kidney disease.
    Forty-one million people have some type of decreased kidney 
function. Of these, 13,000,000 Americans have lost at least 
half of their kidney function. Kidney disease is called the 
silent killer because most patients do not know that they have 
kidney disease, similar to what you heard earlier about the 
liver. Almost 400,000 Americans have what is called end-stage 
renal disease, or ESRD, where they are dependent on dialysis or 
transplantation to live.
    Minorities comprise a disproportionate share of 
thesepeople, with over one-third of the ESRD patients being African-
American. Native Americans, Hispanics, Asians, and Pacific Islanders 
also have greater rates than do whites. The largest group of Americans 
with kidney disease are those in the late forties to late sixties, 
members of the ``baby-boom'' generation.
    Kidney disease is a major cause of death in diabetes. While 
funding for diabetes prevention is a worthy goal and important 
to kidney disease, it is just as important that we address the 
overwhelming need for kidney research dollars to help 
diabetics.
    As the committee considers the need for additional kidney 
research funding, it may be helpful for us to look at the 
economic data available. In 2000, the average cost to the 
Medicare program for an ESRD patient is $44,000 per year. By 
comparison, NIDDK has spent $429 per ESRD patient on research.
    The progression of chronic renal failure can be slowed, but 
it can never be reversed. Meanwhile, millions of Americans are 
facing a gradual decline in their quality of life because of 
kidney disease. There is no cure for kidney disease. Mortality 
rates for those who have reached ESRD are 20 percent per year. 
We can offer treatment to patients who have lost kidney 
function. But the critical need is to prevent the loss.
    While the ASN agrees that there should be a 16.5 percent 
increase for the National Institutes of Health and NIDDK, we 
respectfully ask the committee to allocate a one-time increase 
of $30,000,000 for kidney disease to bring parity to funding as 
compared to other diseases such as diabetes, cardiovascular 
disease, and parkinson's disease. Despite some recent progress 
and discoveries regarding major causes of kidney disease, it 
remains severely under-investigated. A greater research 
investment in this problem is justified based on the huge 
financial burden and human suffering caused by kidney disease.
    We feel there are three areas that we need funding in:
    One is basic research into kidney disease, and 
specifically, given the sequencing of the Human Genome, we feel 
that it is important to apply the tools of genomics to kidney 
disease.
    The second area is that we need a large prospective cohort 
study, a study where we would look at thousands of patients 
with mild kidney disease and follow them over years to see what 
the chances are that they will develop ESRD, who develops ESRD, 
and which are the factors that determine that.
    And lastly, we need more prospective clinical trials to 
determine treatments that are effective in preventing end-stage 
renal disease and treatments that are effective in patients who 
already have end-stage renal disease, specifically, how we do 
dialysis.
    On that note I will stop and thank the committee for the 
opportunity to testify. Thank you.
    [The information follows:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
    Mr. Regula. Thank you.
    Any questions?
    [No response.]
    Mr. Regula. Thank you for coming.
                              ----------                              

                                          Thursday, March 15, 2001.

                      NATIONAL FUEL FUNDS NETWORK


                                WITNESS

KAREN M. BROWN, CHAIRMAN, NATIONAL FUEL FUNDS NETWORK
    Mr. Regula. Our next witness is Karen Brown, Chairman of 
the National Fuel Funds Network.
    Ms. Brown. Mr. Chairman and committee members, thank you 
for the opportunity to present testimony on the LIHEAP 
appropriation for fiscal year 2002. My name is Karen Brown, and 
I am the Executive Director of the Colorado Energy Assistance 
Foundation, and the Chairman of the National Fuel Funds 
Network. I am here representing more than 235 dues-paying 
members, mostly nonprofit charitable organizations like my own, 
located in 44 States and the District of Columbia. The purpose 
of these fuel funds is to assist people with paying their home 
energy bills on a year-round basis.
    We are specifically requesting today that the fiscal year 
2002 appropriation be set at the maximum amount of 
$2,300,000,000--$2,000,000,000 in base funding, with an 
additional $300,000,000 in emergency funds.
    Why is this level, or an even higher level of funding 
needed?
    Let me use my own State of Colorado as an example. With the 
cases received thus far this year, all, virtually all of the 
LIHEAP dollars have been utilized. The needs have been so 
extraordinary that we project expending an additional 
$13,000,000 supplied to our LIHEAP program from one-time 
sources of funds from the State and my own Fuel Fund. Even with 
these extra dollars, the LIHEAP program plans to close its 
doors one month ahead of schedule.
    In Colorado, LIHEAP will nearly double the number of 
families it serves, to more than 80,000, with nearly 20,000 
families--nearly 20,000--that will be turned away. Now my Fuel 
Fund that serves statewide will be able to address less than 
half of those families, leaving more than 10,000 Colorado 
families to struggle to pay their bills, making choices between 
heating and eating and paying their medical bills or 
prescriptions or heat.
    The situation I describe in Colorado is mirrored across the 
U.S. LIHEAP continues to be the core, the very essence of home 
energy assistance, with Fuel Funds like my own serving only a 
very small part of those who do not qualify for LIHEAP.
    Though NFFN members have raised more than $100,000,000, we 
have served 1,800,000 families, and are serving an ever-growing 
population of working poor across the U.S, we are still a 
minuscule, tiny piece of the answer to addressing this need. 
LIHEAP is the foundation of energy assistance with Fuel Funds 
only coming into existence as a result of families needing more 
dollars than are provided to the LIHEAP program.
    What other circumstances make this year unique in terms of 
supporting maximum levels of funding?
    With an energy crisis of the magnitude not seen for nearly 
30 years, in a letter I sent to President Bush, I described the 
situation as a national emergency. Prices have more than 
doubled for gas and propane while other energy costs continue 
to rise. This energy crisis will be with us for several years. 
Thus it is critical that LIHEAP have adequate financial 
resources to ensure access to a basic necessity of life. More 
States are seeing a return to colder winters, and even more 
States are seeing very, very hot summers, both times of 
increasing needs.
    I again request that the fiscal year 2002 funding be set at 
the maximum of $2,300,000,000--$2,000,000,000 in base funding, 
and $300,000,000 in emergency funds. Additionally, we request 
advance funding at the same level for fiscal year 2003. Fuel 
Funds will continue their effort to serve as helpful safety net 
supplements, but cannot in any way replace the vital role 
LIHEAP plays in the lives of the poorest of our neighbors.
    Thank you for the opportunity to present this testimony 
before this committee.
    [The information follows:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
    Mr. Regula. Thank you.
    Questions? Yes, Mr. Sherwood?
    Mr. Sherwood. Being from the Northeast, we have relied on 
LIHEAP a great deal. Of course, with our extremely high home 
heating oil costs, we had a spike last year, now it has hit the 
rest of the country this year with natural gas. So, we are 
listening.
    Ms. Brown. Thank you.
    Mr. Regula. Thank you for coming.
                              ----------                              

                                          Thursday, March 15, 2001.

                       NATIONAL KIDNEY FOUNDATION


                                WITNESS

LINDA HOLOMAH, VOLUNTEER, NATIONAL KIDNEY FOUNDATION
    Mr. Regula. Our next witness is Linda Holomah, volunteer, 
National Kidney Foundation.
    Ms. Holomah. Good afternoon. My name is Linda Holomah. I am 
here on behalf of the National Kidney Foundation, an 
organization comprised of patients, families, organ donor 
families, living organ donors, and health care professionals. I 
am 50 years old and I have been the recipient of hemodialysis 
treatments for 24 years. The result of a routine physical 
examination required for a teaching position in the public 
school system resulted in the identification of the imminence 
of my kidney failure, the cause of which was never determined. 
I was 24. I was fresh out of college and excited as I prepared 
to embark on a life of accomplishments and success. The ominous 
cloud of sickness covered my mind and my heart. I strategized 
how I would end my life. By 26, I was receiving hemodialysis 
and I stepped into what appeared to be the deepest, darkest, 
inescapable hole of captivity I could have ever imagined. I 
felt I must have done something so awfully bad that punishment 
was the only remedy. My mind could not conceive of any deed so 
horrible to warrant such a sentence of death.
    Renal failure came so quickly, without warning, without 
hope. I came from a family that did not have a family 
physician, a father whose family were sharecroppers, and a 
mother whose father, running from the local sheriff, made 
bootleg liquor. To have a roof over my head and to be an A 
student was a wondrous prize for my struggling parents. The 
prevailing family history of hypertension, diabetes, stroke, 
and cancer were insufficient suggestions that I might be 
predisposed to renal failure. It is difficult to measure the 
number of families who are still struggling to climb out from 
under a rock and who have not as yet placed health prevention 
and early detection of family diseases as an item of careful 
consideration.
    It is estimated that nearly 400,000 Americans have end-
stage renal disease; that is, complete, irreversible kidney 
failure without treatment is death. The National Institutes of 
Diabetes, Digestive, and Kidney Diseases estimates that up to 
3,000,000 Americans are potential victims of end-stage renal 
disease. The National Institute of Diabetes, Digestive, and 
Kidney Diseases has responded to the National Kidney Foundation 
recommendations to develop a consensus as to the clinical 
interventions that could prevent or delay end-stage renal 
disease. The goals of the National Kidney Disease Education 
Program and the Kidney Early Evaluation Program are to identify 
and implement strategies that might prevent and delay the 
progression of kidney disease, improve the preparation of 
patients for renal replacement therapy, and reduce the racial 
disparities in the incidence and care of renal disease. I thank 
you for your support of this initiative.
    Additionally, with diabetes being the leading cause of 
renal failure, the Center for Disease Control and Prevention 
funds comprehensive diabetes control programs in about 16 
States, again to educate and prevent. This should be extended 
to all States.
    Obviously, I did not end my life, as my despair so 
desperately suggested. God intervened in that dark inescapable 
hole and a greater life purpose directed me to embrace that 
which was before me. I wanted to live and I found life working 
within me. As I reached to live, I found others reaching in to 
my life to improve my quality of life. I found the 
compassionate arms of Government, organizations, and 
individuals providing the light of life, fueling the energies 
of research, paving the way for treatment for all patients in 
need. The early days of dialysis were like traveling down an 
uncertain tunnel looking for light. The longevity of vascular 
accesses were discouraging, not to mention the survival rate 
for end-stage renal patients. I am certainly on the other end 
of the survival rate.
    Patient's families fall apart, husbands leave wives, 
individuals often live in isolated worlds of personal failure, 
of sickness. This is changing. I would like to think that my 
journey of these 24 years is a visible testimony that there is 
light, hope, and improved quality of life at the end of the 
tunnel of questions, failures, abandonment, and illness. I have 
chosen a modality of hemodialysis three times a week, three and 
a half hours each treatment in a dialysis center, and have seen 
and experienced a lot over these 24 years. I have chosen to 
take an aggressive role in living and choose to actively 
participate in my care. I self-cannulate, I monitor blood 
pressure, I have done all types of things. I have seen a lot. 
One thing I have seen, though, is the need to determine what is 
adequate treatment. I have also seen the need to determine what 
is the best arena for the receiving of this treatment.
    I must stop now, but would like to thank you for your 
generosity of heart and kindness of spirit, the desire to 
improve and extend the lives of individuals who otherwise would 
be without hope. In large part, you have been the impetus for 
the hands of care and mercy that have reached into my life. I 
applaud you in your efforts to continue to fund the programs 
and initiatives that have improved and extended my life over 24 
years. I have found life in that place that spoke of death and 
I am absolutely amazed.
    [The information follows:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
    Mr. Regula. Well, thank you for your inspiring testimony.
                              ----------                              

                                          Thursday, March 15, 2001.

                 NEW YORK UNIVERSITY DOWNTOWN HOSPITAL


                               WITNESSES

RALPH M. MASTRANGELO, CHAIRMAN OF THE BOARD, NEW YORK UNIVERSITY 
    DOWNTOWN HOSPITAL
LEONARD A. AUBREY, PRESIDENT AND CHIEF EXECUTIVE OFFICER, NEW YORK 
    UNIVERSITY DOWNTOWN HOSPITAL
    Mr. Regula. We now want to welcome our colleague, Mr. 
Nadler, and he will introduce our next witness, Mr. 
Mastrangelo.
    Mr. Nadler. Thank you, Mr. Chairman, for allowing me the 
opportunity to speak this afternoon and to introduce Mr. 
Mastrangelo. We are joined today by a number of people from NYU 
Downtown Hospital, including Mr. Leonard Aubrey, standing 
behind us, the President and CEO of NYU Downtown Hospital. I am 
pleased to introduce Ralph Mastrangelo, Executive Vice 
President of the Bank of New York and the incoming Chairman of 
the Board of NYU Downtown Hospital, which is located in Lower 
Manhattan in my district.
    Last year, the committee recognized the critical needs of 
NYU Downtown Hospital and appropriated first $1,000,000 and 
then reduced to $723,000 to help renovate the hospital's 
emergency room. As Mr. Mastrangelo will shortly explain, 
however, the need remains today and we are seeking $2,000,000 
to continue this vital project. He will discuss the merits of 
the request far better than I could.
    But I want to mention that NYU Downtown Hospital is a 
crucial member of both the Chinatown and Wall Street 
communities in my district and serves people from the entire 
Tri-State area of New York, New Jersey, and Connecticut. NYU 
Downtown is the only hospital serving the Chinatown community 
and takes special measures to perform outreach and meet the 
particular needs of that community. It is also the primary 
hospital serving the high stress--and right now we know just 
how high stressed it is--Wall Street community. [Laughter.]
    Its truly heroic efforts at treating the victims of the 
World Trade Center bombing a few years ago earned it special 
distinction. Renovation of its emergency room would enable it 
to prepare even better should, God forbid, a future tragedy 
occur in the downtown or city hall or Chinatown areas.
    Mr. Chairman, I have worked closely with NYU Downtown 
Hospital over the years and I know it to be a vital member of 
the New York health community. I believe it deserves your 
strong consideration for funding to complete this project, and 
I would be happy to work with you on this issue.
    Thank you again for the opportunity to address the 
committee. I am pleased to introduce Mr. Mastrangelo.
    Mr. Regula. Thank you, and thank you for coming. We will be 
interested in what you want to bring to us in the way of 
information.
    Mr. Nadler. Thank you very much.
    Mr. Mastrangelo. Thank you very much, Mr. Chairman, and 
thank you, Jerry. Chairman Regula and esteemed members of the 
subcommittee, I am Ralph Mastrangelo, as Jerry indicated, an 
Executive Vice President of the Bank of New York and Chairman 
of the Board, as of yesterday, of the NYU Downtown Hospital. I 
am, indeed, happy to be here rather than at Wall Street, I 
think.
    Mr. Regula. Is this a nonprofit or is it a city-sponsored--
    Mr. Mastrangelo. It is a nonprofit.
    Mr. Regula. Just a nonprofit.
    Mr. Mastrangelo. That is correct. NYU Hospital is a 
nonprofit acute care community hospital in Lower Manhattan, 
serving some 260,000 residents, some 350,000 daily commuters, 
and over 8,500,000 tourists annually. I have worked personally 
for over 30 years in the community and know first-hand how 
important this hospital is to the people who live and work in 
Lower Manhattan.
    Thank you very much for the opportunity to appear before 
you today to seek your subcommittee's continue support to 
rebuild NYU Downtown Hospital's antiquated emergency center. We 
are deeply grateful to this subcommittee, and especially to our 
Congressman Jerry Nadler, for recognizing the importance of 
this project and providing funding in the fiscal year 2001 
budget. On behalf of the thousands of people we care for each 
year, please accept my heartfelt gratitude for acknowledging 
the merits of our request and approving urgently needed funds 
for the emergency center reconstruction project.
    Our original request to this subcommittee was for 
$2,000,000 a year for three years. We are once again seeking 
$2,000,000 for the fiscal year 2002 budget. To date, NYU 
Downtown Hospital has raised more than $7,000,000 of the 
$15,000,000 goal to rebuild our 30 year-old emergency center. 
Nearly $4,000,000 has been donated by downtown corporations, 
another $500,000 has been contributed by our local community 
organizations, and the remainder has been awarded by the city, 
State, and Federal Governments. This effort has truly been a 
private-public-community project.
    Let me update you quickly on our rebuilding plans. We are 
continuing to aggressively solicit the balance of our funds. We 
have hired a construction management firm, we are finalizing 
the architect's plans, and we expect New York State Department 
of Health to approve our application for Certificate of Need in 
April. If our fundraising remains on track, that is an ``if,'' 
we are anticipating breaking ground in October.
    Rebuilding our emergency center is both imperative and 
urgent. To fully understand, we invite you and members of your 
committee to visit us. Words cannot adequately explain the 
cramped hallways that are filled with waiting patients and in 
our examination rooms and cramping space in which our 
physicians have to work. I can paint a picture of an antiquated 
facility that might make you shudder. But weindeed invite you 
to visit us. We think a picture is worth a thousand words.
    Each year there are over 30,000 visits to our emergency 
room. Half come from the residential neighborhoods we serve--
Chinatown, the Lower East Side, and Battery Park City; the 
remaining 15,000 emergency visits come from the business 
community of Wall Street and the world financial center. 
Virtually every person who experiences a medical emergency in 
the downtown Manhattan area will receive his or her initial 
treatment in our emergency center. As this community has grown, 
the outdated emergency room has become taxed beyond its 
capabilities. Efficiency of services is affected, and waiting 
times have become longer.
    Considered state-of-the-art when it was built in 1972, the 
emergency center is overburdened by an influx of new residents 
in our area, many of whom are newly arrived Asian immigrants 
suffering critical, untreated illnesses due to the lack of 
preventative medicine. The hospital's uncompensated care for 
fiscal year 2001 is anticipated to be nearly $11,000,000, or 
more than 10 percent of the total budget. As such, the New York 
State Department of Health has designated the hospital as 
``financially distressed.''
    In addition, an average of six to seven chest pain victims 
are treated daily, perhaps the figure is higher in the last 
couple of months, given our close proximity to the downtown 
corporate community where the incidence of heart attack is the 
highest per capita in New York City. Our community is both home 
to the largest concentration of Asians outside of China and 
also is the nerve center of the American economy. It is home to 
virtually every major U.S. stock exchange, brokerage firm, 
international commercial bank. It is also near where New York 
City Hall is located, and where city, State, and the Federal 
court systems converge in a four square block area of Lower 
Manhattan. It is a community of great national significance and 
great vulnerability.
    Terrorists have targeted Lower Manhattan for mass attacks. 
As recently as in 1993, more than 400 people were injured 
during the World Trade Center bombing. Paramedics from the NYU 
Downtown Hospital were first on the scene, and more than 200 
victims of that disaster received emergency treatment at the 
hospital. Had that attack been one of bioterrorism, the results 
would have been devastating. Our emergency center currently 
lacks permanent facilities for the management of bioterrorism, 
exposure, and detoxification from hazardous materials. 
Correcting this deficiency is critical to the safety of our 
people in the Lower Manhattan area, the world financial 
district, and it will be corrected with the construction of our 
new emergency facility. It is a superb team of medical 
professionals providing excellent care, unfortunately, in a 
setting with serious limitations and deficiencies.
    Again, we thank you ever so much for recognizing the 
importance of this project in the fiscal year 2001 budget. I 
respectfully request your thoughtful consideration of a 
$2,000,000 appropriation for fiscal year 2002, and urge you or 
a staff member to visit our emergency center. Thank you for 
your time and attention. I would be delighted to answer 
questions.
    [The information follows:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
    Mr. Regula. Thank you for coming.
    Questions? Mr. Peterson?
    Mr. Peterson. What size facility are you as far as acute 
care beds?
    Mr. Mastrangelo. About 200.
    Mr. Peterson. What percentage of your business is 
outpatient versus inpatient, do you know?
    Mr. Aubrey. We do about 100,000 outpatient clinic visits, 
which about 75 to 80 percent of those are insured by Medicaid, 
and we do about 12,000 inpatient discharges, about 48 percent 
of those insured by Medicaid.
    Mr. Peterson. In your overall volume figures, what 
percentage are you Medicaid, Medicare, and no pay?
    Mr. Aubrey. On inpatient, it is about 48 percent----
    Mr. Peterson. I mean total.
    Mr. Aubrey. I'm sorry. Total business, about 30 percent 
Medicare, about 10 percent no pay, and the rest----
    Mr. Peterson. What about Medicaid?
    Mr. Aubrey. Medicaid is about 50-60 percent of our total 
business.
    Mr. Peterson. So you are about half Medicaid?
    Mr. Aubrey. Oh, yes. Significantly. Despite our proximate 
location to Wall Street, principally, the inpatient activity 
and our outpatient activity is Medicaid.
    Mr. Peterson. How do you make out with the DISH payment?
    Mr. Aubrey. Obviously, we go according to the formula that 
is set. Off the top of my head, I cannot say the exact dollar 
amount. But just as any other hospital qualifies.
    Mr. Regula. Thank you for coming. How did your stock do 
yesterday? [Laughter.]
    Mr. Mastrangelo. We are doing okay.
    Mr. Regula. You did not take the big hit then.
    Mr. Mastrangelo. Not quite the hit.
    Mr. Regula. Okay. Thank you for coming. And Jerry, thank 
you for bringing them.
    Mr. Mastrangelo. Thank you, Mr. Chairman.
    Mr. Aubrey. Thank you, Mr. Chairman.
                              ----------                              

                                          Thursday, March 15, 2001.

                  NATIONAL COALITION OF STD DIRECTORS


                                WITNESS

  DR. PAUL ETKIND, CHAIR, NATIONAL COALITION OF SEXUALLY TRANSMITTED 
                        DISEASES (STD) DIRECTORS

    Mr. Regula. Our next witness is Dr. Paul Etkind, Chair of 
the National Coalition of Sexually Transmitted Diseases 
Directors.
    Dr. Etkind.
    Dr. Etkind. Good afternoon, Chairman Regula and members of 
the subcommittee. I am Dr. Paul Etkind, Chair of the National 
Coalition of STD Directors. I am also the Director of the 
Division of STD Prevention in the Massachusetts Department of 
Public Health. I am also pleased to represent today our 
colleagues in the American Social Health Association, or ASHA.
    I thank you for this opportunity to discuss issues and 
priorities surrounding sexually transmitted disease (STD) 
prevention at the national level, particularly because very few 
feel comfortable talking about this very sensitive public 
health issue. This is unfortunate for a number of reasons, not 
the least of which is that it costs this Nation $10,000,000,000 
a year in medical costs, and that is exclusive of HIV/AIDS. As 
such, I do want to acknowledge that this committee has 
recognized these issues related to STD in previous years and I 
do want to extend my thanks to you for that.
    There are many unmet needs and emerging issues in the world 
of STD prevention. For example, international travel heightens 
the possibility of the introduction of strains of gonorrhea 
that are resistant to the drugs commonly used here. The 
explosive growth of the Internet is including a myriad of ways 
to find new sex partners. The Internet requires that we 
strengthen traditional services while developing new ways to 
issue prevention education. New testing technologies are giving 
us a better understanding of the extent of some sexually 
transmitted infections in different populations, thereby 
challenging us to find better ways to reach specific 
populations with education and services. Newly recognized viral 
infections which are currently incurrable demand new prevention 
programming. And the list could go on.
    I am going to restrict my time before you to speak of two 
major areas in which we have the tools and techniques for 
prevention and we know that they can work. Specifically, I wish 
to speak to you today about infertility prevention, which 
relates to chlamydia and gonorrhea, and I also want to speak 
about syphilis elimination. I also wish to speak of the 
emerging area of viral STDs.
    Chlamydia and gonorrhea are two of the most commonly 
reported diseases in this Nation. Both are responsible for 
infertility. For the past decade, Congress has funded a 
national infertility prevention program. This program has 
increased the extent of screening and treatment services, 
making them available to women who are in need of such but had 
little or no access to it. The program's impact has been very 
dramatic. In the Pacific Northwest, the number of cases of 
chlamydia among women served has declined by two-thirds. In the 
Mid-Atlantic States, the number of new cases declined by one-
third. Improved laboratory tests is enabling us to identify 
more of these infections. This new technology, however, is not 
inexpensive. What once cost a few dollars in laboratory 
materials to run a test now costs at least $10. What once cost 
$4 to $5 to treat can now cost $10 or more.
    Currently, different regions of the country are able to 
reach only between 25 and 50 percent of the women at risk of 
chlamydia infections. Indeed, there are 30 States and regions, 
that include such States as Ohio, Florida, Illinois, 
California, and my own Massachusetts, that are able to reach 
only 28 percent of the women who are at risk of contracting 
these infections.
    Chlamydia and gonorrhea are also signature infections among 
adolescents. They are preventable and curable without long-term 
consequences. It would be unethical to not provide quality 
services, especially since we know what works and we have 
demonstrated a successful track record thus far. The services 
we are asking you to support will also provide ``teaching 
moments'' to adolescents to promote changes in behavior. Such 
changes would include delaying the initiation of sexual 
experience and/or reducing risky behaviors for those continuing 
to be sexually active.
    While $20,000,000 will enable all areas of the country to 
reach 50 percent of the women at risk, NCSD and ASHA are 
requesting $47,000,000 to expand the infertility prevention 
initiative to reach 75 percent of the women who could benefit 
from this.
    In regards to syphilis, Congress has been very supportive 
of the CDC's efforts to eliminate syphilis transmission in the 
United States. The current plan to eliminate syphilis issued by 
CDC incorporates the strengths of previous efforts and 
addresses their shortcomings by specifically including affected 
communities in creating local solutions. Bringing local 
communities to the table has increased involvement from 
previously untapped allies such as the faith communities, and 
has helped to develop local capacity for this as well as 
related issues.
    Since 1997, with your support, the number of infectious 
syphilis cases has declined by 30 percent. Congenital syphilis 
cases have declined by 56 percent. Only 22 counties of the 
3,200 in this Nation are now responsible for 50 percent of all 
reported cases. This is down from 31 percent. Syphilis is also 
the greatest example of a health disparity in the United 
States. There are 43 cases of African-Americans for every 1 
case of whites in 1997, but that has declined to 23-to-1 in 
2000.
    In the interest of time, maybe I should just wrap up. You 
have the complete details. I would like to close just by 
commenting on the role of research in disease prevention. 
Research is an important component of the programs which I 
represent. However, research by itself does not answer our 
needs. We need a balance of research and programming. It can 
take years to translate research findings into policies and 
services. Our programs have an ample body of research that has 
already been translated into successful programming. I am 
hoping that additional funds that we are requesting today will 
allow us to return to you next year with more good news of our 
judicious and effective efforts to apply services at the point 
of impact.
    I want to thank you all. I appreciate the extra time.
    [The information follows:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
    Mr. Peterson [presiding]. Thank you, Dr. Etkind. I just 
might have one point, if I could. In talking to young people, I 
find that the fear that was out there for a while when HIV was 
new, especially at high school and college age, has sort of 
faded away and they are no longer afraid. How do we deal with 
that? It seems to me young people just do not understand this 
issue at all.
    Dr. Etkind. It is a huge challenge. I am glad you brought 
that up because what it means is it requires a whole new way or 
new methods of education. In the profession we talk about 
people being ``AIDSed out,'' that there has been so much that 
there is fatigue in terms of behavior, in terms of being 
receptive to educational messages. Sometimes it helps very much 
to talk about some of the other viral STDs, herpes and warts, 
that are not on people's radar screens and yet the behaviors 
that raise the risk of HIV bring on the risks of a whole new 
set of STDs that people have never considered.
    Mr. Peterson. Isn't it true most young people's first real 
knowledge of it is when they have it?
    Dr. Etkind. Unfortunately, that is the case. That is the 
challenge.
    Mr. Peterson. Thank you very much, Doctor.
    Dr. Etkind. Thank you very much.
                              ----------                              

                                          Thursday, March 15, 2001.

                 NATIONAL COALITION FOR CANCER RESEARCH


                                WITNESS

DR. DONALD COFFEY, PROFESSOR OF UROLOGY, ONCOLOGY, PATHOLOGY, AND 
    PHARMACOLOGY AND MOLECULAR SCIENCES, JOHNS HOPKINS UNIVERSITY 
    SCHOOL OF MEDICINE
    Mr. Peterson. We next look forward to hearing from Dr. 
Coffey of the National Coalition for Cancer Research.
    Dr. Coffey, welcome.
    Dr. Coffey. Congressman Peterson, I am putting away my 
testimony here. It is written for the record and I am just 
going to give you some remarks that I think mean something to 
me and I hope to you.
    Mr. Peterson. It will be made a part of the record in full.
    Dr. Coffey. Thank you, sir. First of all, I wish today that 
my predecessor was here, I am from Johns Hopkins, on the 
faculty for 40 years there at the Medical School, and he was 
the man who developed hemodialysis. He has been dead for quite 
a while. But to hear Linda Holomah talk about her 24 years and 
having been saved from absolute death by that technique, it 
would have warmed my heart to see him. That happened to me one 
other time, this is all about research, when I stood in 
Baltimore at the Children's Hospital and watched the dump 
trucks, five dump trucks hauling 75 iron lungs to the trash 
dump because they would never be needed again in the State of 
Maryland. And the man who got the virus to grow in the kidney 
of the monkey that allowed later the vaccines had died about a 
year before that and did not get to see it.
    Once again this morning, when I sat here and saw 
thesewonderful children who have been crippled by all these diseases, I 
am reminded of being here many, many years ago when it was full of 
leukemia children and now we have a cure rate from 80 to 90 percent. I 
do not have to tell you that walking through the clinics of Hopkins in 
the Department of Urology I saw many young men with testicular cancer 
that were absolutely going to be dead within the year. And to see Lance 
Armstrong ride that bicycle to victory with brain lesions, a metastasis 
from testicular cancer, cured just tells us that we have got to do 
this.
    One out of three people in this room will get cancer. That 
is not a fear tactic. Everybody here knows a loved one, or a 
neighbor, or a friend, or themselves who have had this. One out 
of four people will die. This is equivalent, as you know, to 
1,500 people a day. That is five fully loaded Boeing 747 jumbo 
jets going down every day.
    In spite of this, and when we do medical polls it is the 
number one medical concern by far within the population of the 
United States citizens, we put one penny out of ten dollars 
into cancer research in all forms of cancer things coming 
through the NCI. This means that we want to increase that one 
penny 16 percent. Now, if we did that, that would put us back 
on course to doubling the NIH budget and doubling the NCI. But 
the NCI has always had these tremendous opportunities that came 
up as a Bypass Budget. So, at $5,100,000, which is 16.5 
percent, we would be able to fund the Bypass Budget.
    Now why is this so critical, as a man who is in the arena 
watching these investigators and these patients, is that every 
time 100 applications are reviewed at the NIH and found to be 
suitable for funding, only 30 microscopes get turned on. Only 
30 percent of those things are funded. It is hard to believe 
when Richard Nixon declared war on cancer that that number was 
40 percent.
    I represent the National Coalition for Cancer Research. 
This is the largest organization of coalitions. It is the 
American Cancer Society, the American Association for Cancer 
Research, those are the 17,000 investigators, the big clinical 
organization ACSO, clinical oncology, and the nursing 
organizations, and 27 other organizations come together. We are 
pleading for you to really help fund cancer to a level that we 
think we can get, what I told you at the first, back to the 
drawing boards and off the drawing boards and into those 
patients like we did for Lance Armstrong and many others. We 
can, we will, and we must do this.
    I will just sort of end this by telling you the American 
people think there has been a war on cancer. There has never 
been a war on cancer, it has only been a skirmish. As you know, 
it would not even buy three big bombers. As General Schwarzkopf 
said, he could not believe that little bit of money was going 
into what he thought had been a war on cancer. We only have 2 
percent of all the people who get cancer in the United States 
get on a clinical trial--only 2 percent. The way we got 
leukemia in children, we had a big percent of those people on. 
Only 20,000 people are on clinical trials. We only have 30 
Phase III clinical trials underway.
    I would like to thank President Bush. He stepped forward 
and made a very strong statement that he wants to double the 
NIH budget. Unfortunately, he is about $600,000,000 down on 
what it would take to do that. But, still, he has had the 
courage to really step forward and speak out on this.
    And so, we really want support for the CDC, for the NCI, 
and to double the NIH budget. All I can tell you is I am very 
grateful to speak to you. But seeing what I know from back at 
the bench, it is a revolution in biological science in the last 
few years like I have never seen in my life over the first 40 
years. So, we are ready and everybody is waiting for these 
promissory notes to bring us more Lance Armstrongs. But we are 
going to do it. Thank you, sir.
    [The information follows:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
    Mr. Peterson. Thank you. I would just like to say, with an 
encouraging note, I have served on the Pittsburgh Cancer 
Institute Board for the last decade, and they are very 
encouraged with the increased funding. Of course, in 
Pennsylvania we are also looking at 20 percent of the tobacco 
money, which is going to be huge. I do not know what other 
States are doing, other States who are divvying up the tobacco 
lawsuit money, but, in my view, cancer research should be 
getting a big chunk of that because it is a direct cause of 
cancer.
    Dr. Coffey. Yes. I am on the Board of Scientific Advisors 
for that cancer center, and that is a great cancer center, and 
we are hoping it will work like that. But there are lots of 
people tugging at that money, as you know.
    Mr. Peterson. Thank you, sir.
                              ----------                              

                                          Thursday, March 15, 2001.

             NATIONAL ALLIANCE FOR EYE AND VISION RESEARCH


                                WITNESS

EDWARD H. GOLLOB, MEMBER OF THE BOARD OF DIRECTORS, NATIONAL ALLIANCE 
    FOR EYE AND VISION RESEARCH AND PRESIDENT OF THE FOUNDATION 
    FIGHTING BLINDNESS
    Mr. Peterson. Our next witness is Edward H. Gollob, Member 
of the Board of Directors, National Alliance for Eye and Vision 
Research. Welcome.
    Mr. Gollob. Thank you. Good afternoon, Mr. Peterson. I am 
President of the Board of Trustees of the Foundation Fighting 
Blindness. The foundation is the largest nongovernmental funder 
of retinal degenerative research in the world. Our research 
focuses on diseases such as macular degeneration, Usher 
syndrome, and retinitis pigmentosa, and that whole family of 
degenerative retinal diseases. These diseases affect well over 
6,000,000 Americans with no regard to age or ethnicity. I also 
serve as a Member of the Board of the National Alliance for Eye 
and Vision Research. The Alliance is a nonprofit coalition of 
37 eye research organizations, all of whom are dedicated to 
expanding our national capacity to address eye and vision 
research opportunities.
    I am grateful for the opportunity to speak today before 
certainly one of the most important and truly noble committees 
in this or any other Government. On behalf of all Americans, I 
would like to thank the subcommittee for your continuing 
commitment to biomedical research supported by the National 
Institutes of Health and the National Eye Institute. Congress 
has been tremendously supportive of pushing the frontiers of 
medical research through support of the NIH.
    The Foundation and the Alliance, indeed, the American 
people look to the National Eye Institute for the preservation 
of their quality of life. The NEI has caused great progress. 
With available funding, Eye Institute-supported researchers 
have a number of promising new experimental treatments on the 
laboratory bench that have both the potential to halt vision 
loss and also the potential to reverse vision loss, loss of 
sight for millions of Americans.
    It was astounding, but just last year researchers working 
in NEI-funded laboratories actually restored vision in animal 
models with a severe form of blindness. This is a first in 
medical science history. We are now at a turning point. Human 
clinical trails to test a number of new treatments are clearly 
within our grasp. But to bring these promising treatments to 
clinical trials requires even a greater financial commitment 
from organizations like the Foundation Fighting Blindness and 
certainly from the Federal Government.
    Sadly, at this time, only a fraction of the research that 
is needed and available to make treatments and cure a reality 
is funded. Advancements in technology are bringing miraculous 
benefits to medicine. For the first time in history, mankind 
can sift through its DNA and begin to understand human 
existence at the fundamental molecular level. And thanks to the 
foresight and funding support of this very committee, the Human 
Genome has been mapped, allowing medical researchers to locate 
the mutant genes that cause disease. With this knowledge, we 
are at last able to develop therapies for intractable diseases 
that year after year take more lives and disable more Americans 
than any war we have ever fought in.
    I have a daughter who struggles with an untreatable 
blinding eye disease, retinitis pigmentosa. She is one of just 
more than 6,000,000 Americans who suffer with RP and other 
blinding retinal degenerative diseases like macular 
degeneration and Usher syndrome. It is really tough as a parent 
to watch your child lose her sight, her mobility, her quality 
of life, especially when it does not have to be so.
    In the 20 years that I have been a volunteer and heavily 
exposed to the vision research community, the research progress 
that the NEI has made has been truly remarkable. It has brought 
us to the point that where with proper funding breakthroughs in 
treating vision disorders could become one of the first 
significant fruits of the biomedical revolution. But it is 
going to take an increased commitment to advance sight-saving 
therapies from the lab bench to human clinical trials. We are 
so close to delivering those treatments and cures.
    Despite their remarkable record, however, of scientific 
achievement, the NEI has lagged behind. So, again, thank you 
very, very much for your support for the National Health 
Institute and, certainly, for the National Eye Institute.
    [The information follows:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
    Mr. Peterson. If I could just ask you one question. I was 
on a plane about a year ago with a retina researcher who was on 
her way to NIH to do 30 surgeries, she does it monthly on rats. 
She said what they were doing there was really becoming very 
successful at regenerating sight. Are you at all aware of the 
progress that is being made?
    Mr. Gollob. Yes. That possibly was in the area of retinal 
cell transplantation where we have had notable success, we have 
had proof of principle. But just like so many of the other 
people that testified today, sir, gene therapy, stem cell 
technology, those have brought us to the edge virtually of 
bringing these therapies to the clinic. It takes more to do it. 
But the foundation, the base is there.
    Mr. Peterson. Thank you very much.
    Mr. Gollob. Thank you.
                              ----------                              

                                          Thursday, March 15, 2001.

                LOVELACE RESPIRATORY RESEARCH INSTITUTE


                                WITNESS

DR. JOE L. MAUDERLY, VICE PRESIDENT AND SENIOR SCIENTIST, LOVELACE 
    RESPIRATORY RESEARCH INSTITUTE
    Mr. Peterson. Next we will hear from Dr. Joe Mauderly, Vice 
President and Senior Scientist, Lovelace Respiratory Research 
Institute.
    Those of you from Ohio State University will be called upon 
as soon as Mr. Regula returns. He wanted to personally 
introduce you. We have not forgotten you. Sorry I did not say 
that before.
    Good morning, and welcome.
    Dr. Mauderly. Thank you, Congressman Peterson, for allowing 
me to call your attention to a problem shared by several 
department of health and human services agencies. I am speaking 
of the so-called ``mixture'' problem, which is the problem of 
understanding the contributions of individual air contaminants 
or water or food contaminants to the adverse health effects 
that occur when people breath, drink, or eat mixtures of 
hundreds of contaminants from many sources.
    The Lovelace Respiratory Research Institute is an 
independent nonprofit organization focused on understanding, 
preventing, and treating respiratory diseases, including those 
resulting from or made worse by things that people breath. The 
Institute's strong commitment to this mission is reflected by 
its recent commitment of $10,000,000 from its own resources to 
building a program to improve our capability for this work.
    Past research and regulatory arguments have focused on 
single air contaminants, single classes of contaminants, or 
single sources one at a time. Little effort has been spent on 
understanding the importance of these individual contaminants 
in small amounts as they are really breathed as complex 
mixtures. We need to know which exposures and combination of 
exposures are associated with which health effects. We need to 
be able to predict the benefits of changing the mixtures that 
people breath or eat or drink.
    At present, we have little ability to do this. We cannot 
possibly study every combination of contaminants. For different 
reasons, this same fundamental dilemma faces several HHS 
agencies. The Agency for Toxic Substances and Disease Registry 
is concerned for mixed exposures from waste sites and the 
importance of those exposures among the many other traces of 
toxic agents that people breath every day voluntarily and 
involuntarily. Now they are beginning to understand the 
exposures, but they are wrestling with what to do with the 
data.
    The Center for Disease Control's Office of Smoking and 
Health is charged with estimating whether safer cigarettes are 
really safer. They are measuring dozens of changes in smoke 
composition, but they have little ability to predict how those 
changes might affect health.
    The National Institute of Environmental Health Sciences 
concluded that risk from chemical mixtures can seldom, if ever, 
be predicted from single chemical, high-dose studies. They have 
solicited grants on chemical mixtures but they do not have a 
fundamental strategy for dealing with this problem.
    The National Institute of Occupational Safety and Health 
deals with mixed exposures of workers and combinations of 
exposures inside and outside the workplace. It named mixed 
exposures a priority of its National Occupational Research 
Agenda.
    Now for many other reasons, this same fundamental dilemma 
also plagues EPA, DOE, DOT, and DOD. Regardless of the reason 
for concern for mixed exposures by air or water or food, we 
face a common research strategy problem--we do not know how to 
deal with this fundamental problem of mixtures. This issue is 
ripe for cross-agency initiatives within and beyond HHS. The 
complexity of the problem and the need for larger scale multi-
institutional programs has caused agencies to largely avoid 
this issue in the past. Traditional agency-specific grants 
programs can help but they will not be sufficient. There needs 
to be a melding of thinking on this problem.
    Effective interagency and Government-industry programs can 
be developed if the need is recognized and if there is a 
willingness to do so. An example is the National Environmental 
Respiratory Center which is attacking themixtures problem as it 
applies to environmental air pollution. This program, based at our 
Institute, is supported to date by EPA, DOE, DOT, one State, four trade 
associations, and eleven individual corporations, and the list is 
growing. HHS agencies are communicating with the program but are not 
yet participating directly.
    The goal of my testimony is to make the committee aware of 
this cross-cutting fundamental problem and to seek your 
encouragement for HHS agencies to develop interagency dialogue 
and projects both within and beyond HHS. We are certainly 
willing to help in any way we can to tackle what may be the 
single most important air quality problem or most difficult air 
quality question, particularly as it affects minority and 
disadvantaged populations that have perhaps the most complex 
exposures of all.
    In that regard, I also want to take this opportunity to 
voice Lovelace's strong support for our joint project with the 
University of Miami called the Center for Curing Special 
Population Respiratory Disease. As the committee learned from 
the University's testimony yesterday, that project focuses 
specifically on respiratory disease among minority and special 
risk populations.
    Thank you for the opportunity.
    [The information follows:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
    Mr. Peterson. Thank you. I would just like to ask you one 
question I have asked a lot of researchers over the years on 
different issues of air quality. So often they have said to me 
that when you back out smoking, it is the combination of this, 
this, and this, and smoking, but when you back the smoker out, 
many times the risk factor is not there, the total risk factor, 
the combination risk factor. Do you think we should be doing 
research and backing out the smokers to find out----
    Dr. Mauderly. Absolutely. When you are doing population 
studies, smoking is one of the first factors that you have to 
deal with. Now, it is true that in many cases, such as many 
occupational lung diseases, the individuals that have the 
disease are also smokers. And so, clearly, there is an 
association or a correlation between smoking and other 
exposures.
    But when you back out smoking, as you can in many studies, 
both worker studies and population studies, there is still a 
residual affect that can be associated with different air 
pollutants. The difficulty is that since only a few pollutants 
are measured regularly at stations, epidemiologists cannot 
really disentangle which of the many things in the air might be 
causing the problem. And that is the focus of our research 
project, and that is the dilemma that faces HHS agencies.
    Mr. Peterson. Thank you.
                              ----------                              

                                          Thursday, March 15, 2001.

                    COLONIAL WILLIAMSBURG FOUNDATION


                                WITNESS

RICK NAHM, SENIOR VICE PRESIDENT, COLONIAL WILLIAMSBURG FOUNDATION
    Mr. Peterson. Next we will hear from Rick Nahm, Senior Vice 
President at Colonial Williamsburg Foundation.
    Mr. Nahm. Good afternoon, Mr. Peterson, members of the 
staff. I want to thank you for the opportunity to talk with you 
today concerning a proposal that we at Colonial Williamsburg 
believe would recalibrate the coordinates of our national 
compass before an entire American generation loses sight of the 
fundamental principles of freedom and democracy that have made 
our country preeminent in the world.
    Colonial Williamsburg has long been the leader in providing 
distance learning, including the ground-breaking school film 
strip programs initiated over 50 years ago. Today, we have the 
best technological communication resources at our command. We 
are able to reach millions of students and teachers across the 
country through a variety of media outlets. The result of these 
advances in technology is our award-winning Electronic Field 
Trips program that allows students and teachers to visit 
Williamsburg via interactive television programs. In fact, 
today, as we speak, the March program ``Order in the Court'' is 
being broadcast live to over 5,000,000 students throughout the 
Nation.
    Colonial Williamsburg's Electronic Field Trips light speed 
learning experiences are live, interactive television programs 
linked to comprehensive teacher's guides and Internet 
activities and discussion groups. Currently, Colonial 
Williamsburg broadcasts eight electronic field trips on PBS or 
directly into the schools each year. Each field trip consists 
of two or three historical dramas depicting aspects of early 
American life, ranging from a young recruit's view of military 
preparation for the Revolution to a free black man's efforts to 
buy his wife's and children's freedom from their owner. 
Colonial Williamsburg historians and educators host each 
program, introducing students to life in colonial America, and 
are available to answer questions with the registered viewers.
    Several weeks before each program airs, registered schools 
receive a teacher's packet which includes instructional video, 
a comprehensive teacher's guide, full color classroom posters, 
and links to national standards of learning. The teacher's 
guide includes historical background materials, facsimiles of 
historical documents and prints, glossaries, time lines, and 
several suggested lesson plans written by classroom teachers.
    Currently, over 7,000 schools and 20,000 teachers 
representing over 1,000,000 registered students are 
participating in the 1999-2000 Electronic Field Trips, with a 
total viewing audience of more than 5,000,000 students through 
PBS broadcasts. It has taken us six years to get to that point.
    We feel we have an obligation to help more schools and more 
students. We propose to offer our Electronic Field Trips, free 
of charge, to an additional 20,000 schools and 50,000 teachers 
across the country. This would mean registering over 7,000,000 
students a year. We have developed the facilities and the high-
tech programmatic infrastructure necessary for these programs. 
We have proven how successful these programs are in engaging 
and educating students.
    As stewards of an important segment of American heritage, 
we are asking for a one-time appropriation of $5,000,000 to 
register and start up an additional 20,000 schools with their 
50,000 teachers. This would be leveraged with a $5,000,000 
private donation Colonial Williamsburg has already received to 
permanently endow the infrastructure of this special education 
outreach program.
    In summary, our vision is to engage enough students 
throughout the country to influence an entire generation with 
the appreciation for and understanding of the events that have 
shaped our Nation's history. The beginning of the 21st century 
provides an appropriate time to reflect on America, the 
democratic values that have influenced representative 
government, and the legal principles that have always protected 
a free society. Indeed, the onset of the new century is an 
opportune time to focus on the history of America. Thank you.
    [The information follows:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
    Mr. Peterson. Thank you very much. It is certainly a very 
interesting, exciting idea to have all young people across this 
country have the chance to review what you do there.
    Mr. Nahm. Thank you.
                              ----------                               

                                          Thursday, March 15, 2001.

           UNIVERSITY OF MEDICINE AND DENTISTRY OF NEW JERSEY


                                WITNESS

DR. ROBERT SAPORITO, SENIOR VICE PRESIDENT FOR ACADEMIC AFFAIRS, 
    UNIVERSITY OF MEDICINE AND DENTISTRY OF NEW JERSEY
    Mr. Peterson. Next we will hear from Dr. Robert Saporito, 
Senior Vice President for Academic Affairs, University of 
Medicine and Dentistry of New Jersey. Welcome.
    Dr. Saporito. Thank you. Good afternoon, Congressman 
Peterson, members of the committee. My name is Dr. Robert 
Saporito. I am the Senior Vice President for Academic Affairs 
of UMDNJ. I want to thank you for this opportunity to appear 
before you to discuss our priority projects that are certainly 
consistent with the mission of this committee. You have my 
written testimony before you, so I will take the time that is 
available to address three very specific subjects.
    First, I would like to take this time to thank the 
committee for its past activities in support of biomedical 
research and echo the comments of previous witnesses. Your 
funding for NIH, in particular, the support, and continued 
support, to reach a level of doubling its funding by 2003 is 
critically important. We are particularly pleased also that 
funding has increased for both NCRR and HRSA accounts, which in 
reality provide critical support for the Nation's research 
facilities. And we applaud the strong support of the committee 
to sustain the highest standards of excellence in research and 
training programs sponsored by NIH, NCI, CDC, HRSA. It is 
critically important, and we recognize the investment in 
minority health initiatives and the health needs of our most 
vulnerable citizens--children and the elderly.
    Let me tell you briefly about UMDNJ. We are New Jersey's 
university of the health sciences. We are the largest public 
free-standing health sciences university in the Nation. We are 
located on five regional campuses and we have eight schools. We 
own and operate an acute care teaching hospital, and through 
our system of 200 affiliations and partnerships we reach into 
almost every community in the State of New Jersey.
    I would like to share with you our priorities that I 
referenced before, and they are priorities that, again, are 
consistent with the priorities and mission of this committee. 
They are for minority health, children's health, and 
geriatrics.
    Our Institute for the Elimination of Health Disparities is 
to focus on research, education and training, and community 
outreach programs aimed at eliminating health disparities in 
racial and ethnic populations. One of the most critical issues 
that our Nation faces today.
    Our Child Health Institute of New Jersey focuses on the 
treatment, therapies, and cures for childhood diseases and 
disorders.
    Our Geriatric Research Center is focused on cellular, 
biochemical, and physiological basis of aging.
    I would like to comment on two other areas of our focus; 
and they are cancer and bioDefense, both of which you have 
heard about already this morning.
    Our Cancer Institute of New Jersey is the only NCI-
designated clinical cancer center in the State of New Jersey, 
the most densely populated State in the Nation. It is also the 
home of the Dean and Betty Gallo Cancer Center, named for your 
former colleague, Dean Gallo. It is critically important that 
you support NIH accounts that fund biomedical research 
facilities and construction.
    I would also like to identify our Center for BioDefense and 
Medical Response Systems. The support system for research is in 
progress. We have been funded for the past two years. We are 
looking to develop a statewide medical response system that 
will include training of EMS personnel, and a regional system 
to respond to incidents involving weapons of mass destruction. 
A critical issue. We are continuing to request support in this 
area and believe it is critically important for future 
potential bioterrorist attacks.
    I would like to thank the committee for the opportunity to 
present this material to you. As I indicated, you have my 
written testimony. Hopefully, I have kept the time short and 
kept us on focus. Thank you very much.
    [The information follows:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
    Mr. Peterson. Thank you very much. We appreciate your 
testimony.
                              ----------                              

                                          Thursday, March 15, 2001.

  ASSOCIATION OF UNIVERSITY PROGRAMS IN OCCUPATIONAL HEALTH AND SAFETY


                                WITNESS

DR. JACQUELINE AGNEW, ASSOCIATE PROFESSOR, JOHNS HOPKINS SCHOOL OF 
    HYGIENE AND PUBLIC HEALTH IN THE DEPARTMENT OF ENVIRONMENTAL HEALTH 
    SCIENCES
    Mr. Peterson. We will next hear from Dr. Jacqueline Agnew, 
Associate Professor, Johns Hopkins School of Hygiene and Public 
Health. Welcome, doctor.
    Dr. Agnew. Thank you. Mr. Chairman, thank you for the 
opportunity to present testimony to the subcommittee in support 
of funding for the National Institute for Occupational Safety 
and Health (NIOSH) and for the NIOSH-funded Education and 
Research Centers (ERCs). My name is Jacqueline Agnew, and I am 
the Director of the Education and Research Center at Johns 
Hopkins University. I am here today on behalf of the 
Association of University Programs in Occupational Safety and 
Health (AUPOSH), the organization that represents the 16 NIOSH-
supported university-based Education and Research Centers. 
These multidisciplinary ERCs are regional resources for all 
parties involved with occupational health and safety--industry, 
labor, Government, academia, and the general public. The ERCs 
engage in prevention research, research training, professional 
training, continuing education, and regional outreach, all of 
which help the Nation reduce losses associated with work-
related illnesses and injuries.
    During the past 30 years, our Nation has made tremendous 
progress in reducing occupational illness and injury. While 
these reductions are impressive, the remaining burden is 
unacceptably high. On an average day, 137 Americans die from 
work-related illnesses, 17 Americans die from work-related 
injuries, and 9,000 workers sustain disabling injuries on the 
job. The associated economic costs are staggering. In 1992, the 
direct and indirect costs of work-related injuries and 
illnesses totalled $171,000,000,000.
    Additionally, our changing workforce will continue to 
provide new challenges. For example, by 2005 an estimated one-
third of the U.S. workforce will be 45 years of age or older. 
Work injury fatality rates begin increasing at age 45. Rates 
for workers 65 years and older are nearly three times the 
average of that for all workers.
    Despite being the primary Federal agency for occupational 
disease and injury prevention in the Nation, NIOSH receives 
only about $1 per worker per year for its mission of research, 
professional education, and outreach. Last year, the Institute 
of Medicine issued its final report on education and training 
needs for occupational health and safety professionals in the 
U.S. The IOM report identified an insufficient number of 
doctoral level graduates in occupational safety, and inability 
to attract physicians and nurses into formal occupational 
safety and health programs, thus limiting the resources 
available to perform research and to deliver occupational 
health care services.
    Mr. Chairman, AUPOSH supports Congress' goal to double 
funding for biomedical research through support of the National 
Institutes of Health. We also believe that investment in 
biomedical research to prevent, treat, and rehabilitate 
occupational illnesses and injuries is an equally wise 
investment. NIOSH, which is part of the Centers for Disease 
Control and Prevention, does not have a research counterpart in 
NIH. Therefore, efforts to address occupational health and 
safety research needs should be appropriately funded by 
Congress and led by NIOSH.
    NIOSH and its partners in the private and public sector 
developed the National Occupational Research Agenda (NORA) to 
guide occupational safety and health research into the next 
decade. The implementation of NORA requires increased NIOSH 
funding. For most of the 1990s research proposals submitted to 
NIOSH had a funding success rate of only 15 to 16 percent 
compared to a success rate of about 28 percent for NIH overall.
    AUPOSH is supporting a $50,000,000 increase over fiscal 
year 2001 for NIOSH. Within that increase we are supporting 
$5,000,000 for the ERCs. Funding for the ERCs has remained 
essentially flat since 1990, and in real dollars, the ERCs have 
suffered a significant reduction in funding of about 40 
percent. Given that most of NIOSH's extramural research program 
is carried out by our institutions, sustaining the 
infrastructure provided by the ERCs is essential to the success 
of NORA. We believe that these increases will ensure that our 
Nation will have the capacity and demand power to implement 
NORA and maintain the health and productivity of American 
workers.
    Thank you, Mr. Chairman, for the opportunity to appear 
before you today. I would be happy to answer any questions that 
you have.
    [The information follows:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
    Mr. Regula [resumes chair]. Thank you for bringing this 
information to us, Dr. Agnew. Sorry I did not get to hear all 
of it, but we will have an opportunity to look at your 
testimony. Thank you for coming.
    Dr. Agnew. Thank you, sir.
                              ----------                              

                                          Thursday, March 15, 2001.

                    AMERICAN OPTOMETRIC ASSOCIATION


                                WITNESS

DR. KARLA ZADNIK, ASSOCIATE PROFESSOR OF OPTOMETRY, OHIO STATE 
    UNIVERSITY, SCHOOL OF OPTOMETRY
    Mr. Regula. We are going to go back to Dr. Karla Zadnik, 
Associate Professor, Ohio State University, School of 
Optometry.
    Dr. Zadnik. Thank you very much, Mr. Chairman. I represent 
the American Optometric Association and we appreciate the 
opportunity to present our views on funding for the National 
Eye Institute, which is a division of the National Institutes 
of Health.
    The American Optometric Association represents over 31,000 
practicing doctors of optometry. And as a profession that is 
devoted to improving vision care and eyesight of Americans, we 
are very interested in the research that goes on to accomplish 
those aims. We support the goal of the National Eye Institute 
to conduct research for new treatment and cures for eye 
diseases and visual disorders and to preserve sight. Since the 
NEI's founding in 1968, optometrists have been active 
participants in research managed by the National Eye Institute 
which have improved the quality of life for American citizens.
    We applaud NEI's past research achievements, which were 
outlined earlier, and we support the budget proposal found in 
the National Advisory Eye Council's strategic plan for 1999 to 
2003, which recommends a $620,000,000 budget for fiscal year 
2002. This 21 percent increase for NEI over the fiscal year 
2001 level is necessary in order for the NEI to catch up to the 
amount needed to double its own budget over the next five year 
period. Over the past four years, NEI has received among the 
lowest annual increases of all of the National Institutes of 
Health, which has been a disadvantage for the NEI in its 
priority setting and allocation of funding for research.
    Vision and eye health problems are the second most 
prevalent, chronic, health care problems in the United States, 
affecting more than 120,000,000 Americans. Specifically, visual 
disorders hit our children and our elderly. They can affect our 
children's ability to learn, and hasten the loss of 
independence in our elderly people. Visual disorders and 
disabilities impose billions of dollars in direct and indirect 
costs on our society each year.
    It turns out when you ask our elderly people what they are 
afraid of, they say cancer first and loss of vision or 
blindness second. Vision and eye health problems increase 
significantly in frequency and severity with age and are more 
common in those over age 60. More than 1,000,000 elderly 
Americans are legally blind, and over 12,000,000 Americans 
suffer from some form of irreversible visual impairment that 
glasses just will not fix. The NEI has conducted and supported 
research that has resulted in the early diagnosis and prompt 
treatment of eye diseases like age-related macular 
degeneration, the number one cause of blindness in our elderly, 
and especially in diabetic retinopathy.
    A related area of concern is low vision, which we could 
broadly define as any chronic visual disorder that if you put 
your glasses or your contact lenses on, it does not fix it and 
it still impairs your everyday functioning. As many as 
12,000,000 Americans suffer from low vision, which means they 
have difficulty reading, driving, and perhaps working--problems 
of daily living.
    There are many areas in low vision in which further 
research is needed. One which deserves particular mention is 
the development of simple optical assistive devices that help 
people with visual impairments carry out their everyday 
functions. Issues to explore include providing sufficient 
training in the use of these devices, reducing their cost, 
increasing their availability, and improving their function and 
appearance. Scientists are researching better ways of 
presenting, for example, computer graphics so that people with 
low vision can actually enter and be active in our computer 
age, and are developing telescopes and other optical devices to 
improve the ability to see things right here, which many of us 
in the room may suffer from difficulties with that as well.
    The NEI has taken very seriously its stewardship of 
American taxpayer's dollars in terms of educating people about 
their eye problems and what should be done. The National Eye 
Health Education Program, through the auspices and funding of 
the National Eye Institute, specifically develops education 
programs targeted at who gets things. There is a low vision 
travelling display right now that is being displayed in malls 
across the country so that our elderly can be aware of the 
availability of low vision care. Diabetes particularly targets 
Hispanic communities, so there is a Spanish education program 
about diabetes and about diabetic retinopathy. So the NEI has 
been an NIH Institute that has been very active in public 
education.
    Optometric researchers are grateful for the commitment that 
Congress has demonstrated to the NIH, the NEI, and its mission. 
The investment made in eye and vision research has paid great 
dividends to the American people through major breakthroughs in 
eye care and vision. Yet there is still much more to be done to 
preserve and enhance vision. We encourage this committee to 
continue its commitment to the National Eye Institute by 
providing the $620,000,000 funding level recommended for fiscal 
year 2002. Thank you.
    [The information follows:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
    Mr. Regula. Thank you, Dr. Zadnik. Does Ohio State get a 
grant from the----
    Dr. Zadnik. Yes, the Ohio State College of Optometry 
actually is very involved in clinical research and patient-
based research especially targeted to children, if you could go 
out and screen three and four year-olds and then target the 
ones who need more extensive eye care. That project is 
specifically funded by NEI and is being accomplished through 
Head Start preschool programs.
    Mr. Regula. Very well. Thank you very much.
                              ----------                              

                                          Thursday, March 15, 2001.

                     RESEARCH SOCIETY ON ALCOHOLISM


                                WITNESS

DR. SARA JO NIXON, ASSOCIATE DIRECTOR, CENTER ON ALCOHOLISM AND DRUG 
    RELATED STUDIES, UNIVERSITY OF OKLAHOMA HEALTH SCIENCES CENTER
    Mr. Regula. Our next witness is Dr. Sara Jo Nixon, 
Associate Director, Center on Alcoholism and Drug Related 
Studies, University of Oklahoma. Thank you for being here.
    Dr. Nixon. You bet. Thank you. I appreciate the opportunity 
to talk with you about the importance of alcohol research to 
our Nation's health and our quality of life issues. I am Sara 
Jo Nixon. I am a professor at the University of Oklahoma Health 
Sciences Center, which may be better known at this time for its 
football team, but we do some other things as well.
    Mr. Regula. Well, they did win a few games, didn't they.
    Dr. Nixon. Yes, they did win a few. They did all right.
    I am also the Associate Director for the Oklahoma Center 
for Alcohol and Drug Related Studies. And in my professional 
responsibilities and capacities, what I do is I conduct 
research on the effects of alcohol abuse and dependence on 
cognitive functions, on brain functions. In the course of 
conducting that research, I have the opportunity to lecture to 
medical students, to deal with other graduate trainees, and to 
also, perhaps most importantly, talk with community and family 
groups about the toxic effects of chronic alcohol consumption 
on the brain.
    Today, as a Member of the Board of Directors of the 
Research Society on Alcoholism and the co-Chair for its 
Government Affairs and Advocacy Committee, I am here to talk 
about the importance of this continued work in alcohol 
research.
    The cost of alcohol research to our Nation is well known. 
It is estimated to be at about $185,000,000,000 annually. That 
is a real and powerful number, but that may not be the real 
cost because there are a lot of other ways we can look at the 
cost of alcohol abuse and dependence as well. For instance, it 
is associated with 50 percent of the homicides, 40 percent of 
the fatal motor vehicle crashes, 30 percent of suicides, and 30 
percent of accidental deaths.
    If we look at it in terms of the burden of disease concept, 
so that we look at disability-adjusted life years or the loss 
of productive life years, we can see that alcohol abuse and 
dependence ranks fifth in the United States, and it falls 
behind four conditions or disorders or situations which are not 
themselves independent from alcohol abuse and dependence, and 
those include: ischemic heart disease; traffic accidents, which 
I have already mentioned; certain kinds of cancers that you 
have already heard about; and HIV/AIDS. So we are talking about 
a very significant issue.
    Despite, and probably perhaps because of, the widespread 
effects of alcohol, it has been impossible to identify a single 
cause or a single solution. It is multidimensional. But we do 
know that genetic factors, that sociocultural factors, that 
individual differences in how alcohol is metabolized all 
contribute to the problem of alcohol abuse and alcoholism. And 
we know that if the current research is not sustained and 
enhanced, we will not be able to answer some other fundamental 
questions that will allow us to move forward in the field.
    I think it is also appropriate for us to thank this 
committee. So on behalf of the Research Society on Alcoholism, 
as well as the millions of Americans that are benefitting from 
this research, I want to thank this committee and the Congress 
for their support for the National Institute of Alcohol Abuse 
and Alcoholism in the current fiscal year. It is only because 
of this kind of commitment that we have been able to make the 
progress that we have. But that, of course, does not mean that 
we are done.
    Mr. Regula. You would like a little more.
    Dr. Nixon. That is right. Just a little more. Because we 
have really made some major progress in the last decade. We 
have been able to better understand some of the genetic 
influences, some of the familial influences, some of the 
sociocultural aspects, and we know it is of critical importance 
that we continue this work.
    In that regard, let me say that the Research Society on 
Alcoholism has identified some priority areas which, if 
adequately funded, will indeed meet the priorities of NIH.
    We believe that there is a very important need of 
continuing to try to identify risk, to conduct education 
programs, to look effectively at which ones work and which ones 
do not and to move forward in that regard. We need to really 
establish means of assessing integrated treatment as well, 
particularly for those with the most severe form of the 
disease, those kinds of treatments that need not just the self-
help groups, not just the traditional kinds of therapies, but 
also the pharmacotherapies that are in the process of being 
developed.
    Technology is important as we begin to understand the brain 
mechanisms that are affected by chronic alcohol abuse, and 
particularly as it may help us distinguish between alcohol 
abuse and alcohol dependence, and also as it may help us 
understand that one of the keys to relapse in individuals who 
initiate treatment is craving, and craving is itself a brain 
event and we can understand that within that concept if we are 
able to conduct that kind of research. The Human Genome Project 
and the Consortium on the Genetics of Alcoholism have, of 
course, raised our attention as well, and we think it is 
important to be able to continue that work.
    We would like for this committee to recommend a funding 
increase of $3,400,000,000 specifically to NIH, bringing us to 
$23,700,000,000.
    Mr. Regula. We will take that under consideration along 
with a lot of others.
    Dr. Nixon. Yes, indeed. And we would like to see the NIAAA 
receive an increase of $79,400,000. Thank you.
    [The information follows:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
    Mr. Regula. Well thank you for being here.
    Dr. Nixon. You bet.
                              ----------                               

                                          Thursday, March 15, 2001.

                         JOSLIN DIABETES CENTER


                                WITNESS

DR. ALAN MOSES, CHIEF MEDICAL OFFICER AND MEDICAL DIRECTOR, JOSLIN 
    DIABETES CENTER
    Mr. Regula. Dr. Alan Moses, Chief Medical Officer and 
Medical Director at Joslin Diabetes Center.
    Dr. Moses. I appreciate the opportunity to appear before 
you to present the Joslin Diabetes Center proposal to improve 
the access to and quality of health care for people with 
obesity and Type II diabetes.
    The Joslin Diabetes Center is the world's largest and most 
comprehensive independent research and patient care institution 
devoted to diabetes.
    Mr. Regula. Excuse me, where is that located?
    Dr. Moses. It is located in Boston.
    Mr. Regula. Boston?
    Dr. Moses. Yes, sir.
    We are particularly proud that tomorrow morning, we will 
host the issuance of the U.S. Postal Service public service 
stamp on diabetes awareness. A number of U.S. Senators and 
Congressman and Dr. Jeffrey Copeland, Director of the CDC, will 
be in attendance.
    In fact, Secretary Thompson was also scheduled to speak as 
well, but his attendance was usurped by higher administrative 
priorities, which we hope are not related to the health of Wall 
Street, rather than the American population.
    The approach that we are proposing today involves the 
translation of advances in science to practical application of 
these advances to the rapidly growing number of patients 
affected with diabetes and obesity.
    Let me give you a few facts. Recent data about diabetes and 
obesity are really deeply disturbing. Obesity is a major risk 
factor for the development of Type II diabetes and a major 
cause of morbidity and mortality in the United States.
    Now one in every two Americans is overweight. The 
prevalence of obesity has increased 57 percent in the last ten 
years, with a disproportionate impact on minority populations, 
and an alarming increase in children and adolescents.
    The rise in obesity is driving an emerging epidemic of 
diabetes. This epidemic predicts increased human suffering, 
premature loss of life, and a huge cost to the health care 
system.
    Mr. Regula. Is that because obesity puts a greater 
requirement on the pancreas and, therefore, it can not meet the 
normal body needs?
    Dr. Moses. That is part of it, yes.
    We know that genetic influences underlying diabetes are 
exacerbated by environmental influences that consist of both 
increased body weight, obesity, and lack of exercise, which 
also increases the prevalence of obesity.
    Diabetes in the United States increased by 39 percent from 
1990 to 1999, according to a recent CDC survey to now an 
estimated prevalence of 6.5 percent nationally.
    The increase in the prevalence of diabetes goes hand in 
hand with the increase in obesity. Ninety percent of patients 
with diabetes have Type II diabetes, and 90 percent of these 
individuals are obese.
    The impact of diabetes is apparent from the fact that 
diabetes and its complications compromise 25 percent of 
Medicare costs.
    Over 80 percent of people with early Type II diabetes would 
be cured, if they could lose 10 to 20 pounds of weight, but the 
overwhelming majority can not.
    Obesity is a medical and social problem that must be 
addressed seriously and with new prevention and treatment 
paradigms.
    To address these issues, the Joslin Diabetes Center 
proposed to develop a three-year pilot demonstration project 
for the prevention and treatment of obesity and Type II 
diabetes.
    This program is based on our experience with and reputation 
for the development and implementation of innovative patient 
education programs, and will utilize Joslin's expertise in 
basic research, clinical medicine, and information technology.
    We propose to adapt Joslin's state-of-the art diabetes 
outpatient intensive treatment program to the treatment of 
obesity, with emphasis on different ethnic, economic, social 
and age population groups; to evaluate clinical strategies for 
prevention and treatment of obesity, based on knowledge 
emanating from our basic science laboratories, studying the 
molecular mechanisms that regulate appetite and control energy 
expenditure; and to utilize motivational and educational 
techniques, using self-directed computer-based education, to 
reinforce patients' ability to make alternative food choices 
and modification of life style, with the goal of developing 
programs that can be utilized at the community and school level 
to prevent obesity and reduce the rising tide of diabetes.
    The cost of the project would be $3.6 million annually. The 
goal of this project is to provide a practical approach to 
reduce the prevalence of obesity in Type II diabetes, with a 
resultant reduction in heath care costs and an improvement in 
quality of life for American citizens.
    The treatment of both diabetes and obesity requires patient 
empowerment through education. Our innovative diabetes 
outpatient intensive treatment program focuses on individual 
flexibility, with the goal of efficiently utilizing both 
patient and health care resources.
    Through education, the patient is given the foundation to 
assume a major part of his or her own care in the future. This 
is appealing to the patient, more efficient in the useof 
resources in the long-term, and produces good results.
    With the increasing penetration of the Internet, the Joslin 
Diabetes Center has an opportunity to develop and deploy 
patient education programs for diabetes and obesity to large 
numbers of patients.
    By integrating Joslin's telemedicine infrastructure, and 
this specific educational program as a component of the CDC, 
health care practitioners can be linked with the National 
Diabetes Education Program, thus targeting the segment of the 
population that suffers from the epidemic explosion of both 
obesity and diabetes.
    We believe that the proposed pilot project will 
significantly improve detection, prevention, and treatment for 
obesity and Type II diabetes, and we will achieve our goal of 
reducing costs, improving patient access to information 
essential for self-management, and improve quality of life for 
patients.
    Furthermore, this project will help facilitate the rapid 
application of new scientific knowledge to improve the clinical 
care of obesity and diabetes.
    Thank you for this opportunity to appear before you. I 
would be pleased to answer any questions you might have.
    [The information follows:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
    Mr. Regula. Thank you for being here.
    Our next witness Terry Cross, Executive Director, National 
Indian Child Welfare Association. Thank you for coming.
                              ----------                              

                                          Thursday, March 15, 2001.

               NATIONAL INDIAN CHILD WELFARE ASSOCIATION


                                WITNESS

TERRY CROSS, EXECUTIVE DIRECTOR, NATIONAL INDIAN CHILD WELFARE 
    ASSOCIATION
    Mr. Cross. Good afternoon, Chairman Regula. You have my 
written comments. You and I have sat across the desk before at 
Interior hearings.
    I want to say just a bit about who I am. I am the Executive 
Director of the National Indian Child Welfare Association. We 
are located in Portland, Oregon.
    We are a membership organization of tribal child welfare 
programs, and workers who work in the field with Indian 
children and families.
    We strive to improve the lives of Indian children through 
training, technical assistance, community development and 
public policy work, making sure that every Indian child has 
access to the kinds of services that are needed to have safe 
and permanent family situations.
    I am going to frame my remarks in terms of some problems 
and solutions. Unfortunately, in our Indian communities, our 
children and our young people have the highest rate of suicide 
of any group in the county.
    One in every ten of our children is expected to have some 
kind of serious emotional disturbance by the time they reach 
adulthood, and they have little or no access to service.
    Just to give you an example, in the Indian Health Service 
budget, the agency charged with mental health services, you 
know as well as I do that there are 2,500 Indian children with 
serious emotional disturbances, for every professional trained 
to work with children within the Indian Health Service. That is 
one heck of a case load.
    What are the solutions to those problems? Well, one 
emerging solution is a program out of SAMSHA, called circles of 
care. Nine tribal communities have been funded to do 
demonstrations and planning projects, bringing together what is 
called systems of care models, trying to knit together the 
funding from special education, juvenile justice, state and 
county mental health services, and tribal services into one 
framework to serve children.
    The tribes who are participating in this program have been 
able to put together cultural approaches, agreements, and 
contracts with outside agencies and schools, and they have been 
able to knit together services that would not have been 
possible otherwise. It is currently funded at $.7 million. We 
are asking that to increase to $1.1 million.
    Under the comprehensive community mental health services 
for children and their families programs, seven tribes are 
funded for demonstration programs of a similar nature, and they 
receive funding for the implementation of the services, and not 
just the planning.
    Under those grants, tribes have been able to put together 
services and approaches to mental health out of their own 
cultural teachings. They are finding that the extended family 
and our cultural practices of health and healing, whenbrought 
to bear in children's mental health services, are highly effective. We 
have been able to document that in the research that goes along with 
that funding.
    Those two programs are highly important, and we are asking 
that there be 10 percent allocation in that comprehensive 
Community Mental Health Services Grant Program, with a 10 
percent allocation for tribal programs.
    Those are just scratching the service. They are only 
showing us what is possible to do in our Indian communities, 
when we take charge of our own programs.
    A real change could happen, and we know this committee does 
not have the jurisdiction, with access to the mental health 
services block grants, which tribes do not have.
    Another problem that I want to talk about is, unfortunately 
in our culture, and it hurts our hearts to think about this or 
say this, but in the 1990s, there was an 18 percent increase in 
child abuse in our communities; the highest rate of any ethnic 
group in the country.
    An Indian child is twice as likely to experience abuse or 
neglect. The data is really bad, so we do not even know for 
sure whether that is really true, or what is going on out 
there.
    So we are asking for a $2 million allocation in the Office 
of Child Abuse and Neglect's budget for the National 
Clearinghouse on Child Abuse and Neglect, and the Office of 
Child Abuse and Neglect to offer research and information to 
tribes and tribal programs on child abuse and neglect. We will 
be lobbying later this year for access to CAPTA funds for 
tribes, which they currently are excluded from.
    Other issues that we know are not in your jurisdiction have 
to do with the 50,000 Indian children that come into foster 
care each year. We know that there are about 5,000 of them 
whose parents receive no reimbursement for their care, because 
tribes do not have access to Title 4(e). We hope that we will 
be hearing more about that.
    [The information follows:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
    Mr. Regula. Thank you. From my previous committee, I am 
very aware of the problems, and I appreciate your coming here 
today.
    Mr. Cross. Thank you, Mr. Chairman.
    Mr. Regula. Which tribe do you belong to?
    Mr. Cross. I am a member of the Seneca Nation of Indians.
    Mr. Regula. Seneca, that is in New York State; is it not?
    Mr. Cross. That is right.
    Mr. Regula. Do you have a casino?
    Mr. Cross. No, we do not.
    Mr. Regula. Well, you missed out on that.
    Mr. Cross. Right, well, our tribe is one of those who do 
not believe in that on moral grounds.
    Mr. Regula. That is very interesting. Thank you.
    The next witness is Morgan Downey, Executive Director, 
American Obesity Association.
                              ----------                              

                                          Thursday, March 15, 2001.

                      AMERICAN OBESITY ASSOCIATION


                                WITNESS

MORGAN DOWNEY, EXECUTIVE DIRECTOR, AMERICAN OBESITY ASSOCIATION
    Mr. Downey. Thank you, Mr. Regula. It is a pleasure to be 
before this committee. On a personal note, I have had the 
privilege of working with your predecessors, Chairman Porter 
and Chairman Natcher. I worked very closely for a long time 
with Sylvio Conti.
    Mr. Regula. They were all very good people.
    Mr. Downey. They were the best.
    Mr. Regula. They left big shoes here.
    Mr. Downey. That is right. Well, we hope you have a very 
long and successful tenure here. I am sure that you know that 
this is a great subcommittee, and has wonderful programs under 
its jurisdiction.
    I wanted to particularly stress a point that was just made 
a few minutes ago by Dr. Moses. I am going to elaborate on it.
    I think during what I hope is your long tenure as Chairman, 
you are going to see tremendous health problems arise in this 
country, as well as globally, from obesity. I would like to 
give you a picture of where we are with that now, and then I 
will relate it to funding to NIH and CDC.
    We know that obesity now is second only to deaths from 
tobacco and smoking, as the leading cause of preventable deaths 
in this country. The number is now believed to be around 
300,000 deaths a year, due to obesity.
    But obesity has a lot of other specific health 
effects.There are over 30 health conditions that are believed to be 
directly caused or aggregated by obesity.
    About half of these would be considered well established, 
scientifically. They include Type II diabetes, hypertension, 
stroke, heart disease, impaired immune function, gallbladder 
disease, colorectal cancer, endometrial cancer, renal cell 
cancer, breast cancer, sleep apnea, end stage renal disease, 
urinary incompetence, and osteo-arthritis of the knee and hip.
    The cost estimates are kind of crude and out-of-date, but 
they were estimated several years ago to be about $90 billion a 
year.
    But the most important facts about obesity have to do with 
where the trend lines are going; and all of the trend lines are 
going in the wrong direction.
    Over half of the American adult population is overweight. 
That is 97 million people. Nearly one quarter or 40 million 
people are considered obese.
    Obesity among adults is increasing at the rate of one 
percent a year. We have had a 50 percent increase in the rates 
of obesity since 1960.
    Rates are high among women, some minorities, and lower 
socioeconomic groups, but all groups, races, genders, and 
economic categories are affected by this. It just is a matter 
of who is getting there first.
    The important point that I would like to make today is that 
we are seeing an increase among obesity in children that is 
both as tragic as it is preventable. Overweight and obesity 
among children that is both as tragic as it is preventable. 
Overweight and obesity among children and adolescence has 
doubled since the 1960s.
    Just a few days ago, the CDC released a report that 13 
percent of children, age six to eleven, are overweight, up from 
11 percent in 1994; and 14 percent of adolescents are 
overweight, an increase from 11 percent in 1994.
    CDC also reported just two days ago that the death rate 
from heart disease among young Americans has gone up, not down; 
reversing a decades-long trend. From 1989 to 1996, the rate of 
sudden cardiac deaths among 15 to 34 year olds was up 10 
percent.
    The death rate was up among both boys and girls. Twenty-one 
percent of the deaths occurred before the age of 24. The author 
of the CDC study believed that obesity played a major role.
    Also referred to earlier was a CDC report that the rates of 
Type II diabetes, which are clearly and obviously linked to 
obesity, are also increasing at an epidemic rate among 
children. We know from previous studies that nearly 70 percent 
of overweight children and adolescents will continue that 
condition into adulthood.
    The keys for solving this problem are research and 
prevention. Obesity is clearly a major generator of diseases, 
yet the conditions caused by obesity receive far more attention 
and funding resources from NIH than does obesity, itself.
    I am talking about prevention and treatment. But the area 
of childhood obesity is so important. We know how to affect 
that. Treatment is very difficult and complicated and 
expensive. Prevention is something on a population basis, that 
we need to address.
    [The information follows:] 

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
    Mr. Regula. Well, thank you for coming.
    Mr. Downey. Not at all; you have my full statement. Thank 
you.
    Mr. Regula. Thank you.
    From my guess, we have two more witnesses, and then we will 
be finished.
    Our next is John Willey, Member and Board of Directors, 
National Prostate Cancer Coalition
                              ----------                              


                                          Thursday, March 15, 2001.

                   NATIONAL PROSTATE CANCER COALITION


                                WITNESS

JOHN WILLEY, MEMBER, BOARD OF DIRECTORS, NATIONAL PROSTATE CANCER 
    COALITION
    Mr. Willey. Mr. Chairman, I want to thank you for inviting 
me today to present this testimony on behalf of the National 
Prostate Cancer Coalition. Before I begin, I would like to 
extend a warm welcome to you, Chairman Regula. The NPCC is very 
excited to work with you. We also know of your concern for the 
more than 198,000 new cases of prostate cancer that will be 
diagnosed this year, including 8,700 in Ohio, alone.
    This committee has strongly supported initiatives to 
advance prostate cancer research and improve cancer care, and 
NPCC looks forward to continuing the excellent working 
relationship with the committee, under your new leadership.
    My name is John Willey. I am a prostate cancer survivor. I 
am speaking to you today in my role as a member of the Board of 
Directors of the National Prostate Cancer Coalition, the 
largest prostate cancer advocacy group. I was diagnosed with 
prostate cancer at age 47.
    Mr. Regula. Was it with a PSA?
    Mr. Willey. Absolutely.
    Mr. Regula. So you endorse that for all men?
    Mr. Willey. Big time; absolute.
    Mr. Regula. What, from about 45 on?
    Mr. Willey. I would say 40.
    Mr. Regula. 40?
    Mr. Willey. I was 47. You are cutting it close, at 45. It 
is the same thing as breast cancer. We are seeing the ages 
going younger and younger and younger. They are both 
hormonally-driven diseases, one in a man and one in a woman.
    The instances of new diagnosis are about the same, about 
200,000 each. The amount of deaths are about the same, 30,000 
to 40,000 each year. So the diseases are really remarkably 
comparable.
    Mr. Regula. But a PSA gives you early detection and, 
therefore, a good way to treat?
    Mr. Willey. We have this magical thing. It is a simple 
blood test. You do not have to go under radiation, mammography 
or anything like that. It is a simple blood test. It is 
relatively cheap, $60. There is no excuse not to do it, and my 
testimony will address that a bit later; but I am glad you 
mentioned it.
    After my initial treatment began to fail, my life 
expectancy was very limited. But I am alive today, due to the 
success of an investigational treatment. Another gene therapy 
vaccine, which stimulates my immune system, makes it aware of 
where the prostate cancer cells are, and then it gets the T-
cells to attack.
    The treatment is the direct result of prostate cancer 
research that your predecessors have funded. My story is just 
one hopeful sign of the progress in this fight.
    With that, there comes a warning. Prostate cancer is still 
the most commonly diagnosed, non-skin cancer, and the second 
most common cancer killer of American men. One in six American 
men will be diagnosed with prostate cancer during the course of 
his lifetime, and over 31,000 men will lose their lives to 
prostate cancer this over; about one death every 15 minutes.
    I am deeply saddened to report that the number of men 
diagnosed with prostate cancer is growing. As the babyboomers 
become senior citizens over the next decade, cancer instances 
and mortality are expected to increase by as much as 25 to 30 
percent.
    The impact on human lives will be devastating, if we do not 
make a substantial investment in research, early detection, and 
prevention.
    Further, the costs of cancer can and will cripple Medicare 
and our economy. NIH has done a study which estimates that the 
overall cost of cancer in the year 2000 alone exceeds $180 
billion.
    Even more distressing is the unequal racial and ethnic 
burden of the disease. The instances of prostate cancer among 
African American men is 35 to 50 percent higher, and their 
mortality rate is double that of white males.
    While many of the numbers are disturbing, we are now living 
in the most promising time for prostate cancer research. The 
opportunities for drug development and treatment have expanded 
dramatically in the last years.
    To ensure that we seize on these exciting opportunities, 
and right now, I am speaking with the weight of one million 
prostate cancer survivors who are alive today, and millions 
more who will get it in the next decade, I would ask you to 
fully fund the National Cancer Institute's bypass budget of 
$5.03 billion, and to increase the budget for the National 
Institutes of Health by 16.5 percent, to $23.7 billion.
    These increases will enable NIH to fund $375 million for 
prostate cancer research by fiscal year 2002, as recommended in 
the five year budget to Congress.
    Finally, I would like to address one other problem. We 
recommend that Congress hold hearings and instruct the U.S. 
Preventative Services Task Force and the CDC to revisit 
prostate cancer screening guidelines, as we talked about 
earlier.
    The U.S. Preventative Services Task Force continues to 
recommend against the use of prostate-specific antigen tests 
for routine testing. However, current scientific evidence 
clearly suggests that early detection by a PSA reduces 
mortality due to prostate cancer.
    As you weigh this year's budget, I hope you will consider 
not only the direct impact of prostate cancer, but also the 
enormous relief and hope that increased funding will bring to 
those who suffer from this disease.
    While this important research will cost Federal dollars, we 
ask that you remember the great costs of further delay to cure 
prostate cancer.
    Thank you.
    [The information follows:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
    Mr. Regula. Thank you very much.
    Did I hear you say that some group opposes the PSA?
    Mr. Willey. Yes, the U.S. Preventative Services Task Force 
and the CDC have not endorsed the Prostate Specific Antigen as 
a primary screening.
    Mr. Regula. Do you have any idea why? What is their choice, 
or what is their alternative?
    Mr. Willey. They say it is not quite as medically proven as 
they would quite like. I do not know what they need. I think 
there is clearly adequate proof, but maybe an argument can be 
made that it is not there. I do not think it can be reasonably 
be made. I do not know of any good reason.
    Mr. Regula. That is very interesting. Go ahead.
    Mr. Willey. There is one other thing that we would like to 
strongly recommend. We have the budget on a five year plan. We 
would strongly recommend that this committee have NIH present, 
in next year's appropriations, a five year plan for prostate 
cancer research.
    We think it is very important to have this on a long-term 
basis, so that we know where they are going, and that you can 
monitor their progress.
    Mr. Regula. Well, thank you very much.
    Mr. Willey. Thank you, sir.
    Mr. Regula. Our last witness is Dr. Jan Towers, Legislative 
and Policy Directors, American Academy of Nurse Practitioners; 
Dr. Towers?
                              ----------                              


                                          Thursday, March 15, 2001.

                AMERICAN ACADEMY OF NURSE PRACTITIONERS


                                WITNESS

DR. JAN TOWERS, LEGISLATIVE AND POLICY DIRECTORS, AMERICAN ACADEMY OF 
    NURSE PRACTITIONERS
    Dr. Towers. I would like to welcome you, also. I can 
remember back to Mr. Natcher, as well as Mr. Downey can. So we 
appreciate your willingness to work with us in relation to some 
of our issues. I am Director of Health Policy for the American 
Academy of Nurse Practitioners. The Academy represents over 
60,000 nurse practitioners of all specialties, throughout the 
United States. This testimony speaks to the need for continued 
and increased Federal funding for nurse practitioner and nurse 
midwife educational programs and traineeships, for the coming 
fiscal year.
    Nurse practitioners and nurse midwifes constitute an 
effective body of primary care providers, that may be utilized 
at a cost savings in both fee for service and managed care 
arenas in this country.
    Savings to the Federal Government of greater than $100 
billion per year in the Medicare Program alone are estimated 
when full utilization of nurse practitioners is implemented.
    Likewise, managed care data is becoming available that 
demonstrates an aggregate patient-per-month cost savings of 
over 50 percent among patients seen by nurse practitioners, 
when compared to similar patients being cared for by 
physicians.
    Mr. Regula. Excuse me, you are really talking about the 
group that would administer anesthesia?
    Dr. Towers. No, we are talking about nurse practitioners.
    Mr. Regula. What would they be doing?
    Dr. Towers. For nurse practitioners, our specialties 
include family, adult, pediatric and women's health, and 
gerontology specialties. We function very much as physicians 
do, in those particular frameworks.
    Mr. Regula. What kind of a degree or license does this 
require?
    Dr. Towers. You would have an advanced degree, a Masters 
Degree, in addition to your professional degree.
    Mr. Regula. So you could take over functions that a doctor 
might normally be required to do?
    Dr. Towers. That is correct. We take histories. We perform 
physical examinations. We order and perform and interpret 
diagnostic tests. We diagnose and treat acute, episodic, and 
chronic illness. That includes prescribing medications.
    Mr. Regula. Well, this would maximize the availability of 
care, because it free up doctors, for example, and it would, of 
course, reduce costs, probably.
    Dr. Towers. That is correct. That is right.
    The other thing that is great about nurse practitioners is 
that they are very hooked into health promotion and disease 
prevention.
    This is where some of the cost savings come in, because 
they really do work at the front end of things, in the primary 
care arena, and do provide care in relation to health promotion 
and disease prevention, which does do a lot to reduce costs.
    The other kinds of cost savings, to sort of extend that, 
include savings due to reductions in emergency room visits and 
hospitalizations, and savings associated with the treatment of 
illnesses in their early stages.
    There are a lot of studies now, multiple studies, that have 
been done, in both fee for service and now managed care, that 
demonstrate cost savings in both the diagnostic testing, the 
prescribing and hospitalizations, and the emergency room use, 
whenever nurse practitioners are being utilized.
    One of the things that has been studied, and everybody does 
know, that nurse practitioners and midwives are highly 
qualified health care providers, who have demonstrated their 
ability and interest in providing primary care to individuals 
and families in both rural and urban settings, regardless of 
age, occupation, or income.
    The quality of their care has been well documented over the 
years. I think sometimes we feel like we are in the most 
studied group of health care professionals that there are.
    With their advance preparation, they are able to manage the 
medical and health problems seen in the primary care and acute 
care settings in which they work.
    Nurse practitioners and nurses midwives provide care in 
both rural and urban settings, in community health centers, 
public health clinics, hospitals, and hospital out-patient 
clinics, Indian Health Service, and the National Health Service 
Corps., as well as other free-standing primary care settings.
    According to data collected by the Academy, 82 percent of 
nurse practitioners are employed in primary care settings, and 
over 50 percent of their patients have family incomes that are 
in the poverty range.
    In order to guarantee the proper preparation of nurse 
practitioners and nurse midwifes, assistance in the development 
of high quality programs continues to be needed across the 
country. The funding for such programs has always been limited, 
and should always be more. The value and worth of such funding 
continues to be undisputable.
    The sums of money described here are about a drop in the 
bucket, compared to the investments made by the Federal 
Government to underwrite the cost of preparing other medical 
professionals.
    Yet, in the face of significant nursing shortages, the 
existence of over 40 million people with no health insurance, 
and the continued lack of primary care providers in this 
country, increases in funding are obviously needed, and we 
would like for you to think about a 30 percent increase in the 
line for nurse practitioners and nurse midwives.
    Without these increases, additional barriers to the 
effective utilization of the most cost-effective primary care 
providers in our health care systems are created.
    The areas, in relation to the educational programs, that we 
would like to have addressed have to do with the trainee-ships 
which are very important, in terms of getting nurse 
practitioner students from under-served areas to be able to get 
scholarships, stay in the system, and go back to where they 
came from; and special projects that look at nurse managed 
centers, and some new kinds of frameworks for utilizing nurse 
practitioners and nurse midwifes, in primary care settings.
    All of the funding, particularly in Title 8, goes for that 
kind of thing. We would like to see that increased. It is the 
only place where we have funding for nurse practitioner 
education programs.
    Mr. Regula. You heard our Native American talk about the 
problems among the Native American population, the Indians. 
This would probably be one way of alleviating some of those 
critical areas.
    Dr. Towers. That is very true. One of the nice things about 
nurse practitioners is, we have a very strong community health 
educational component, both in our undergraduate and our 
graduate programs.
    We are very interested in working with the under-served. So 
in many of these places, where there are high risk populations 
and vulnerable populations, we are very well prepared to go and 
work with those people.
    [The information follows:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
    Mr. Regula. Do you run into any resistance from the medical 
profession?
    Dr. Towers. A little in certain areas.
    Mr. Regula. I thought so.
    Dr. Towers. But one of the things that I think we are all 
aware of is that there are an awful lot of people out there 
that need care, and there is plenty of work to go around for 
everybody. We are into teamwork, so we hope they will be, too.
    Mr. Regula. Do you do house calls?
    Dr. Towers. Yes, we do.
    Mr. Regula. Good, well, thank you for coming.
    This concludes the hearing for today.
                                           Tuesday, March 20, 2001.
    Mr. Regula. We are going to get started. We have a large 
group this morning. We have 28 witnesses. So we have to keep 
moving in order to get through the schedule. We want to welcome 
all of you. I know being here represents a sacrifice of time 
and, in many instances, a cost to be here, but in the process, 
you help to shape the bill and help to shape the right kind of 
policies that will not only help you, but help others, and this 
is a good example where people are trying to be helpful.
    Just a couple of things procedurally. Unfortunately, we can 
only give you 5 minutes. Those little boxes on the table when 
you start to speak, you will have a green light for 4 minutes, 
an amber light for 1 minute and a red light for 5, meaning its 
time to and Francine is tough. She is my enforcer, and she 
blows the whistle--right--when the time is up. I know it is a 
temptation even for me to ask a lot of questions, but if I 
don't keep moving, we just don't get through the day.
    Your complete statements, will be made a part of the record 
and will also be evaluated by the staff.
    We have a difficult challenge in this committee because we 
do a lot of good things that help a lot of people. We deal with 
all the medical research, NIH, Centers for Disease Control. I 
was just reading a story about mad cow disease and hoof and 
mouth, which is a serious problem. We want tokeep it on the 
other side of the Atlantic, but the Centers for Disease Control is on 
the forefront of trying to protect all of us from the threats that go 
with that in the consumption of meat products.
    We do all the welfare programs, a whole range of things 
that are important to a lot of different groups, of course, the 
National Institutes of Health, and we do all the education 
funding from Head Start to Pell grants to college loans, 
everything in between. The budget for this committee last year 
was about $108,000,000,000, and $108,000,000,000 looks pretty 
big to a farm boy from Ohio where I was glad to get a nickel to 
go to the festival when I was a kid. But what we want to do is 
use it wisely because the needs are enormous and the 
opportunities are enormous. If we can get breakthroughs at NIH, 
if we can achieve what the President is talking about with no 
child left behind in education, what a wonderful accomplishment 
that would be.
    This country is, I think, perhaps more oriented to the 
people than almost any in the world. We have more volunteers 
than any other country. We have, I think, more programs that 
are concerned with the well-being of people, and it is a great 
strength of our Nation, and each of you, by being here and 
contributing to the body of information for our committee, it 
will strengthen not only your cause, but the Nation as a whole. 
So thank you for coming. We will get started.
    Our first witness today is our colleague Don Sherwood from 
Pennsylvania, and the newest member of this committee. So we 
are happy to see you this morning, Don.
    Our first witness is Dr. Alfred Rider, President Children's 
Brain Diseases.
                              ----------                              


                                           Tuesday, March 20, 2001.

                       CHILDREN'S BRAIN DISEASES


                                WITNESS

DR. J. ALFRED RIDER, PRESIDENT, CHILDREN'S BRAIN DISEASES, ACCOMPANIED 
    BY MICHAEL JOYCE, TRUSTEE
    Dr. Rider. Thank you. I am Dr. J. Alfred Rider, President 
of the board of trustees of the Children's Brain Disease 
Foundation. It is a pleasure to submit testimony for fiscal 
year 2001/2002. This will be the 24th time I have had the 
privilege since 1978 to testify before your committee. I am 
submitting my testimony----
    Mr. Regula. Things have improved in that 24 years, you hope 
so?
    Dr. Rider. It is the 24th time.
    Mr. Regula. I beg your pardon?
    Dr. Rider. It is the 24th time.
    Mr. Regula. Yes.
    Dr. Rider. Twenty-three years, but 24 times.
    Mr. Regula. Yes. Things have improved?
    Dr. Rider. Yes, yes, oh, yes, they have improved a lot.
    I am submitting my testimony on behalf of the Children's 
Brain Disease Foundation and thousands of children and their 
families who are affected with Batten disease.
    Specifically, I would like to address the need for 
continued funding at the previous 1994 level, plus an increase 
amounting to approximately an average yearly addition of 4.1 
percent since then for Batten disease research, or a total of 
$3.9 million. This is less than the approximate 6 percent 
increase that the NINDS has been receiving yearly since.
    Unfortunately, the funding has consistently been less each 
year since, and in 1998/1999, only $2.7 million was spent. I 
just received a summary from the NINDS for funding for fiscal 
year 2000 which indicates that $3.3 million was granted. This 
is the approximate level of 1994. However, there is about 
$600,000 in that budget, which to say is, related to Batten 
disease, is a stretch. Everything is related to everything 
else, but it is not directly related. So I still think they are 
about $1,000,000 short.
    Batten disease is a neurological disorder affecting the 
brains of infants, children and young adults that occurs every 
once every 12,500 births. There are approximately 440,000 
carriers of this disorder in the United States. It is the most 
common neurogenetic storage disease in children. The usual case 
is characterized by motor and intellectual deterioration, 
visual loss, behavioral changes, the onset of progressively 
severe seizures and ends in a death in a vegetative state.
    This irreversibly severe illness constitutes enormous 
nursing and financial burden to families with affected 
children. Patients may live in a deteriorating state from 10 to 
43 years. The changes that occur in the brain in these children 
are quite similar to many of the changes that occur in the 
aging person. Thus, effective treatment for Batten disease may 
allow us to alter the aging process andage-associated senility 
in our senior citizens.
    A major impetus to research occurred as a result of your 
committee's perseverance and interest that began to achieve 
fruition in 1991 when you directed the NINDS to expand its 
research on Batten disease. As a result of this, monumental 
events have occurred, which you asked me about.
    The gene defects have been isolated for the infantile, late 
infantile and juvenile forms of Batten disease, and at least 
five variants. Pepstatin-insensitive lysosomal peptidase has 
been identified and purified as the human enzyme in the late 
infantile form of Batten disease. It is now possible to make an 
absolute definitive diagnosis and determine carriers in all 
three childhood forms by a simple blood test and to prevent the 
disease by genetic counseling, including in vitro 
fertilization.
    Numerous test animals, dogs, sheep and mice, have been 
identified, who have similar diseases and these have 
facilitated research. Much still needs to be done. The specific 
roles of enzyme defects resulting from gene abnormalities must 
be determined. Further research is being directed to treatment 
by gene replacement and/or specific enzyme therapy and possibly 
pharmaceutical agents.
    Finally, it is obvious that without research funds--without 
funds, research cannot proceed. The Children's Brain Disease 
Foundation, the Batten disease Support and Research 
Association, have raised private monies to provide seed money, 
but the long-term funding obviously has to come from the NINDS.
    We would like to have you include in the wording, the same 
wording that appeared last year in the appropriation bill, and 
now we will get down to the nitty-gritty. ``the committee is 
disappointed with the pace of research in Batten disease. The 
committee believes that the institute should actively solicit 
grant applications for Batten disease and also take aggressive 
steps to assure that a vigorous research program is 
established. In recent years, funding for this disease has 
decreased. The committee requests that the NINDS be prepared to 
discuss the funding history and steps taken to increase 
research in this area. The committee strongly urges that 
increased funding be provided to combat this devastating 
disease.''
    To this, I would like to add the NINDS is directed to spend 
at least $3.9 million for Batten disease for the year 2000/
2001. With this pressure, we can expect to see an increase in 
research leading to meaningful treatment.
    Now I have with me Mike Joyce, who is on the board of 
trustees, who had twins with Batten disease. One is no longer 
with us and the other one, I guess, was unable to come today 
because of the illness, but I think Mike would like to say a 
word.
    Mr. Joyce. Mr. Chairman, if you would indulge me just a 
minute. This is my 13th year up on the Hill with Dr. Rider. 
Last year we missed the testimony because that was the day that 
I buried one of my identical twin sons from Batten disease.
    I was blessed with four sons. The middle boys, identical 
twins, were cursed with this disease, and Ian, as Dr. Rider 
suspected, is too sick to be able to come today. It is 
something to see the visual impact that this disease has on 
these children.
    When we first came up on the Hill for the first couple of 
years, Ian and Joey were able to walk in. They deteriorated 
over the years and the members of the committee that have been 
here that long actually saw the devastation that this disease 
causes.
    We have made a lot of success over the years in this 
research, but I honestly believe that it has been stalled and 
not enough is being done. In addition to that, through my own 
family we are just devastated over the death of the one boy. My 
youngest son especially tried to commit suicide right after New 
Years because of the depression he suffers. The psychiatrists, 
and I use the word ``psychiatrists'' as plural, who have been 
seeing him feel that because he is able to see his one 
identical twin brother, he sees the one that died and he knows 
what is going to happen to the other one; and I hope that there 
is some funding made available or some research made available 
to help families such as ours with this type of devastation.
    [The testimony follows:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
    Mr. Regula. Well, I thank both of you for your testimony. 
Questions?
    Mr. Sherwood. No. Thank you very much.
    Mr. Regula. Okay. Thank you again.
    Mr. Robert Anderton, President, American Dental 
Association. Mr. Anderton.
                              ----------                              

                                           Tuesday, March 20, 2001.

                      AMERICAN DENTAL ASSOCIATION


                                WITNESS

ROBERT M. ANDERTON, PRESIDENT, AMERICAN DENTAL ASSOCIATION
    Mr. Anderton. Thank you very much.
    Chairman Regula, Mr. Sherwood, and other members, I am Dr. 
Robert Anderton, President of the American Dental Association.
    We represent 144,000 dentists nationwide. We thank you for 
allowing us to present this testimony today.
    In 1989, at this subcommittee's request, HHS issued a 
report on the status of Federal oral health programs. The 
report described a lack of coordination and leadership of oral 
health activities within the agency.
    These problems had a direct negative impact on access to 
oral health care. Today there has been some improvement, but 
similar problems remain. The Surgeon General confirmed this 
last year in his landmark report, Oral Health in America.
    Although the report noted great advancements in dentistry 
in America, it also identified troubling disparities in oral 
health; most pointedly, among children from low income families 
and the elderly.
    Mr. Chairman, there is much room for improvement. Federal 
agencies must ensure that a strong Federal structure exists to 
eliminate oral health disparities. While my testimony will 
speak for itself on the need for greater funding in many areas, 
I would like to share with you the ADA's proposal for how to 
improve the coordination, implementation and accountability of 
Federal oral health programs.
    Our proposal focuses on four key areas: Prevention, 
training, infrastructure and research.
    Oral health prevention is a priority of the Health 
Resources and Services Administration. Lacking any formal 
program, HRSA established an ad hoc oral health initiative. 
This cross-agency effort works to establish programs aimed at 
reducing oral disease in vulnerable populations and enhancing 
access to care. Unfortunately, this initiative has been greatly 
limited due to lack of program authority and designated 
financial support.
    ADA believes that establishing a separate and distinct line 
item for this initiative would provide the clearest 
accountability for the subcommittee. While we understand that 
some may prefer flexibility to a separate line item, we would 
argue that formalizing such an initiative would hold HRSA and 
collaborative agencies accountable while providing a central 
focus on oral health in HRSA. We recommend that this effort be 
funded at $20,000,000 for fiscal year 2002.
    HRSA also oversees the general and pediatric dental 
residency programs that provide specialized training to 
graduate dentists. Underserved children have the greatest oral 
health needs. As the numbers of these children increase, we 
need more and more dentists with pediatric training and general 
dentists trained in pediatric dentistry. Currently, 17 percent 
of toddlers and 23 percent of second graders have experienced 
tooth decay, but only one in five underserved children have an 
annual dental visit. This is partly due to the fact that there 
are not enough dentists trained in pediatric dentistry.
    In fact, several States have less than 10. This is not a 
time to stop funding this program. Rather, it needs to be 
doubled and funded at $9,000,000.
    We also need to help States enhance their dental 
infrastructure. Only 31 States have full-time dental directors 
who work with Medicaid and SCHIP. Without their presence, many 
States fail to recognize the need to prioritize dental services 
for children. In fact, in 1998, government spending for dental 
services was only 1.2 percent of over the $159,000,000,000 
designated for Medicaid personal health care expenses.
    Dental directors through CDC grants have also been 
instrumental in developing statewide water fluoridation and 
other preventive programs. For example, dentists in Wisconsin 
created a dental sealant program which treated 3,000 needy 
children in 40 counties. We believe with a funding level of 
$17,000,000, CDC division in oral health could help more States 
create similar programs.
    Mr. Chairman, the Surgeon General's report also states that 
good oral health should be recognized as more than healthy 
teeth. The research done by the National Institute of Dental 
and Cranial Facial Research finds that oral infections and 
other systemic diseases such as cardiovascular disease and low 
birth weight are directly connected with oral programs. We 
believe that NIDCR should be funded at a level of the 
$370,000,000 in order to continue this research.
    We also want to point out that schools are the 
infrastructure for this research; but currently there is close 
to 400 faculty vacancies in our dental schools. We have a 
crisis here, too.
    Enhanced loan repayment programs would help attract and 
maintain dental school faculty.
    We thank you, Mr. Chairman, and Mr. Sherwood, for 
considering our suggestions, and we look forward to working 
with you.
    [The testimony follows:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
    Mr. Regula. Thank you. Any questions?
    Mr. Sherwood. No. Thank you.
    Mr. Regula. Are you making progress with Native Americans? 
I know in my other committee, we had some really tough 
problems; about 25 percent of the Indian population that had 
any dental care.
    Mr. Anderton. Yes, we are. They are very high on our list 
and we hope through the loan repayment programs and other 
initiatives, scholarship programs, we can get more dentists to 
serve.
    Mr. Regula. It is a real challenge.
    Mr. Anderton. It really is. Thank you.
    Mr. Regula. Thank you for coming.
    Our next witness is Dr. Henry Ponder, CEO and President for 
the National Association for Equal Opportunity in Higher 
Education. Dr. Ponder.
                              ----------                              

                                           Tuesday, March 20, 2001.

     NATIONAL ASSOCIATION FOR EQUAL OPPORTUNITY IN HIGHER EDUCATION


                                WITNESS

HENRY PONDER, CEO AND PRESIDENT, NATIONAL ASSOCIATION FOR EQUAL 
    OPPORTUNITY IN HIGHER EDUCATION
    Mr. Ponder. Good morning. Mr. Chairman, and distinguished 
members of the subcommittee, I am Henry Ponder, Chief Executive 
Officer and President of the National Association for Equal 
Opportunity in Higher Education. NAFEO is the national 
organization representing 118 predominantly and historically 
black colleges and universities. I want to thank you for 
allowing me to appear before you today as you consider funding 
priorities relevant to the fiscal year 2002 Labor, HHS, 
Education and related agencies appropriations bill.
    In the time that I have, I would like to highlight some of 
the initiatives that we support and are looking to strengthen 
in the new millennium.
    My focus today primarily will be on funding for higher 
education programs. A more detailed summary of NAFEO requests, 
including recommendations for important health programs, has 
been submitted for the record.
    During the last 2 decades, many of the educational 
achievements African Americans have experienced are directly 
attributable to our Nation's HBCUs. Despite the progress, the 
increase in college-going rates for African American high 
school graduates have not kept pace with those of the white 
population. Ten years ago, African American high school 
graduates enrolled in college at a rate that was only 5 
percentage points below that of white graduates; 28 versus 33 
percent.
    Today, there is a difference of 8 percentage points, 34 
versus 42 percent. Much of the responsibility for ensuring 
greater educational access for African Americans closing the 
college entrance gap and addressing emerging trends at the 
national level rests on the shoulders of HBCUs. As a result, 
additional and targeted resources are required.
    Financial aid, I would first like to speak about financial 
aid. Trends related to enrollment, particularly college 
entrance gaps, partly are affected by the low income status of 
African American families. The majority of African American 
families have incomes that are less than $25,000 a year. Thus, 
the students enrolled in HBCUs disproportionately rely on 
Federal student financial aid programs. Although there were 
sufficient increases in last year's appropriations, NAFEO 
supports additional funding in the areas identified by the 
student aid alliance. Because students attending HBCUs rely so 
heavily on the Federal student financial assistance programs, 
NAFEO fully supports increases proposed for Pell grants, SSIG, 
SEOG, TRIO, work-study and several other student aid programs.
    Specifically, NAFEO joins the student aid alliance in 
recommending that the maximum award for Pell grants be 
increased from $600 to $4,350.
    Funding for SSOG would be increased to $791,000,000, 
representing an increase of $100,000,000 above last year's 
level. Funding for work-study would be increased from 
$1,011,000 provided last year to $1,050 million proposed for 
fiscal year 2002; and an additional $150,000,000 for TRIO.
    Capacity building. In addition to seeking increased funding 
for the financial aid programs, increased funding for Title 
III, part B is a top priority. NAFEO recommends that funding 
for Title III part B undergraduate institutions be increased by 
$50,000,000 to $235,000,000. Such an increase will allow these 
schools funding to better support faculty development, student 
retention, facilities and endowment efforts in a more 
comprehensive fashion.
    Second, NAFEO recommends increases for the Title III part 
B, section 326 program, strengthening historically black 
graduate institutions.
    NAFEO's recommendation of $60,000,000 raises the funding 
level from the $45,000,000 provided last year. This 
recommendation will allow HBCUs to address the serious issue of 
the undersupply of African American Ph.D.s in the sciences and 
engineering fields, and professional degrees in law, pharmacy 
and medicine.
    HBCU collaborative centers of excellence. As the committee 
is aware, the Department of Education estimates that 2,000,000 
new teachers will be needed over the next 10 years. The need 
for teachers of color is particularly acute.
    For example, minority student enrollment has risen 
consistently over the past three decades, with students of 
color accounting for nearly 37 percent of elementary and 
secondary school enrollment in 1998. However, diversity in the 
workforce is not growing at the same rate. While there was an 
increase in the number of public elementary and secondary 
school teachers of almost 11 percent from academic years 1991, 
only 8 percent of these were African Americans. To address 
these trends, we recommend an appropriations of a minimum of 
$20,000,000 annually to support the establishment of up to 10 
historically collaborative educational excellence and teaching 
preparations.
    Mr. Chairman, thank you for allowing me to speak.
    [The testimony follows:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
    Mr. Regula. Thank you. Any questions?
    Mr. Sherwood. No.
    Mr. Regula. Do you feel progress has been made? How long 
have you been president of this group, or CEO?
    Mr. Ponder. Five years.
    Mr. Regula. Has there been progress during that period of 
time?
    Mr. Ponder. Tremendous progress.
    Mr. Regula. So the programs are working; you just feel we 
need more funding?
    Mr. Ponder. That is correct.
    Mr. Regula. Thank you very much.
    Our next witness will be Paul Vallas, Chief Executive 
Officer of the Chicago Public Schools.
                              ----------                              

                                           Tuesday, March 20, 2001.

                         CHICAGO PUBLIC SCHOOLS


                                WITNESS

PAUL G. VALLAS, CHIEF EXECUTIVE OFFICER, CHICAGO PUBLIC SCHOOLS
    Mr. Regula. Now, if I understand it correctly, you are 
appointed by the mayor?
    Mr. Vallas. Yes, I am.
    Mr. Regula. The legislature in Illinois gave the mayor 
pretty much a free hand to shape up the Chicago schools?
    Mr. Vallas. That is correct.
    Mr. Regula. I am trying to set the stage. So you are not a 
superintendent in the conventional sense. Is there a school 
board yet?
    Mr. Vallas. Yes, there is. There is a 7-person school board 
appointed by the mayor. It is a corporate board, and I am the 
chief executive officer of the school district.
    Mr. Regula. So your title is CEO rather than 
superintendent?
    Mr. Vallas. Yes, yes, it is.
    Mr. Regula. Do you have pretty much a free hand in shaping 
the policies of the school district?
    Mr. Vallas. Yes, I have. Obviously, the mayor appointed 
both the board and the superintendent. There is no--I guess 
there are no public differences. We usually resolve things in-
house. Also, the board was given full control over all school 
resources, so our grants are block granted; our levees are 
block granted.
    Mr. Regula. Block granted from the State?
    Mr. Vallas. Block granted from the State, yes, sir.
    Mr. Regula. Interesting. I think Cleveland is somewhat 
similar in that.
    Mr. Vallas. Yes.
    Mr. Regula. Is there any other big city that has a 
comparable format?
    Mr. Vallas. Not identical. Cleveland is probably the 
closest. Detroit also is comparable.
    Mr. Regula. Okay. Well, thank you for coming. We look 
forward to your testimony.
    Mr. Vallas. Well, very quickly let me give you some of the 
results of those efforts. We had 8 strikes in 15 years. For the 
last 6 years, we have had labor peace and financial stability. 
This was a school system where barely 20 percent of the 
children could read and compute at or above national averages. 
The math scores are beginning to approach national norms. The 
reading scores are anywhere from 35 to 40 percent. But the 
percentage of kids in the bottom performing quartile have 
dropped from 56 percent to 21 percent just in the last 5 years.
    Our graduation rates have gone from about 50 percent to 
approaching 70 percent. Obviously, we are not satisfied. But by 
all intents and purposes, the school system is improving. Also, 
let me point out that with the financial flexibility we have 
been able to literally renovate over 500 schools. We have spent 
close to $3,000,000,000 on schoolconstruction and repair, and 
we have built 70 new buildings, additions and annexes in just 5 years.
    Mr. Regula. How is it financed? Is it bond issues?
    Mr. Vallas. It is bond issues, yes, sir. So we had a lot of 
success. The mayor, of course, only looks at the glass half 
empty and not half full. That is why he has been the successful 
mayor that he has been.
    I just wanted to lay out those statistics, and they are in 
my testimony, to drive home the point that we have had success. 
Also, let me point out that in addition to closing the gap 
between where children are and where they should be, we have 
significantly expanded the number of high achievement children 
into the system. In the last 3 years alone, the number of 
students in advanced placement programs has increased by well 
over one and a half. So, in other words, we had 3,000. Now we 
are approaching 7,500. And the biggest increase has been among 
minority students, African American and Hispanic students. So 
we are pretty proud of that, too. So the results are there.
    With that said and done, what I would like to do is make 
some recommendations and place them within the context of our 
own experience. First of all, obviously we are supporting the 
renewal of the ESEA programs, and we do support the additional 
accountability being brought to those programs. We test at 
every level. We disaggregate the data. We test at every grade, 
so we make those grades public, although we are not heavily 
reliant on standardized tests for making promotion decisions.
    We also support the block granting of Federal funding to 
the schools, as long as the funding is increased rather than 
decreased. We have had the block grant experiences before.
    The State of Illinois did not decrease our revenues. They 
just gave us greatest flexibility, and we would support certain 
broad categories defined for those block grants, such as early 
childhood, after-school programs, summer school programs, 
extended school day, professional development for teachers and 
class size reduction. If you give us those broad categories, it 
will ensure greater accountability.
    On the issue of early childhood funding, we strongly 
support obviously increases in early childhood funding. 
Children under the age of 5 in the State of Illinois, 
constitute about one-third of the student population and yet 
they got about 3 percent, 4 percent of the education dollars. 
So clearly prioritizing early intervention, let me give you an 
example. In the Chicago public schools, our lowest test scores 
are third graders. They read barely at 30 percent at or above 
national norms. That is using a very rigorous test of basic 
skills. By the time they graduate, the reading scores are close 
to national norms. That means the longer we have them, the 
better they do.
    If we can get more of the kids earlier, we can have a more 
dramatic impact. But the bottom line is, we don't have enough 
time with them to close the gap completely. So heavy 
investment.
    We would also support the shifting of Head Start funding to 
the Department of Education. We need to bring accountability to 
the early childhood programs. That means curriculums need to be 
aligned. When children are in Head Start and children are in 
State-funded, early childhood programs, we need to make sure 
that the children are being taught reading and math and 
technology fundamentals at a very early age. That is what we 
try to do. We try to align our curriculum beginning at age 3. 
So we certainly support early childhood funding.
    On the special education side, the State funds about 40 
percent of the special ed mandates that we are subjected to. 
The Federal Government supports 9 percent. Special ed is a huge 
burden on us and all public school systems. About 20 percent of 
our money goes into special ed. We need for the Federal 
Government to have some resolution to this funding problem. And 
it is not a private-public issue because half of our special 
education dollars are spent on private institutions. So we seek 
out the best educational opportunities for our special 
education population.
    What we need is we need for the Federal Government, as well 
as for the State, to begin to fill that funding gap.
    Certainly laying out a proposal, for example, there is a 
proposal by Congressmen Bass and Bentsen to basically fully 
fund special ed over a period of 4 to 5 years. We would 
certainly be very supportive of that, but it poses a tremendous 
burden because the courts are pushing school districts for 
greater inclusion.
    For example, we are under a consent decree requiring least 
restrictive environment. So as a result of that, we have 
teachers that have dozens of special education children 
basically that they are singularly responsible for. So the 
special education mandate is--I saw the red light so I will 
stop now.
    [The testimony follows:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
    Mr. Regula. Well, thank you. I have a lot of questions but 
I will have another opportunity to ask them tomorrow when we 
meet.
    Mr. Vallas. Yes.
    Mr. Regula. Mr. Jackson, would you like to make some 
comments here?
    Mr. Jackson. Mr. Chairman, just a brief acknowledgment. 
Paul Vallas has done an outstanding job in the Chicago Public 
School System. As you know, Mr. Chairman, we have an enormous 
system in the City of Chicago, and the standards that he has 
insisted upon from every principal, from every parent and from 
every child is indeed legendary when one considers the size and 
scope of the Chicago Public School System. So I want to take 
this opportunity to thank Paul Vallas for taking time out of 
his enormously busy schedule.
    The work that he has done in Chicago has put him in great 
demand across the country to duplicate his efforts of the 
Chicago Public School System and, quite frankly, Mr. Chairman, 
when history is written on public education in the first 
quarter of this century the name Paul Vallas will stand tall as 
a factor in the improvement of public education for every 
single American.
    We are very grateful, Mr. Vallas, that you have taken the 
time in your schedule to be here. Thank you.
    Mr. Vallas. Thank you very much. We truly 
appreciateCongressman Jackson's leadership in Chicago on education 
issues, as well as other issues.
    Mr. Regula. That is great. Both of you are working at it.
    Question: Can your students move horizontally throughout 
the system?
    Mr. Vallas. Absolutely. One of the things that we have 
done--if you can indulge me for one minute, we have done is 
large urban school systems make the mistake--they are getting 
better at providing educational opportunities for 
underachieving children and instituting programs to close the 
gap. I think they have shown a lot of success, but a lot of 
times programs to challenge the high achieving children or the 
children that are just average are lacking. What we do is, in 
addition, no one matches us for our early childhood after-
school and summer school programs. I have half of my children 
in after-school and summer school programs, literally. No one 
compares to that.
    What we have been doing is we have been seeding all of our 
schools with what we refer to as magnet-type programs. In other 
words, we have our magnet schools, which are open enrollment 
schools, but we put open enrollment programs in all of the 
schools. These are AP courses. These are international 
baccalaureate programs, math, science and technology academy 
programs; incidentally, which this committee has been very 
supportive in funding. These are all open enrollment programs.
    So students have the capacity, particularly in the high 
schools, to move from high school to high school based on what 
they consider to be the best educational opportunities. So when 
you graduate from one of our elementary schools, Mr. Chairman, 
you have a choice of going to 1 of 12 city-wide magnet high 
schools or enrolling in 1 of 68 neighborhood-based magnet 
programs.
    We have also found that the neighborhood-based magnet 
programs and the exemplary programs that are all open 
enrollment that we seed in our neighborhood schools are also 
vehicles for more effectively integrating our schools.
    Mr. Regula. Everything I read says Chicago is on the move, 
and I can see with leadership from yourself and Mr. Jackson 
that that is what is happening. I look forward to discussing 
this further with you.
    Mr. Vallas. Thank you very much.
    Mr. Regula. Questions?
    Mr. Peterson. Yes.
    Mr. Vallas. Oh, I am sorry.
    Mr. Peterson. Don't run away. We are not done with you yet.
    What percentage of your students are in special ed?
    Mr. Vallas. Roughly, about 15 percent.
    Mr. Peterson. What percent of your students do you think 
get exposed to some sort of a technology program?
    Mr. Vallas. Well, right now we mandate, and I apologize I 
haven't learned the art of shortening my answers, maybe it is 
the academician in me, but we require that all of our graduates 
at the end of eighth grade go through a mandatory summer school 
technology program to make sure that they are ready for 
technology in the high school. We actually begin that summer 
school mandate as early as 7th grade. So we have literally 
incorporated into our academic standards a requirement that all 
the children receive some sort of technology training.
    We are working to incorporate technology into all the 
classroom instruction by training the teachers. As you know, 
the teachers come out of the colleges and universities with 
very few technology skills. So we are working very hard to 
train the teachers as fast as we are working to train the 
students.
    Mr. Peterson. What all do you classify as technology?
    Mr. Vallas. Well, first of all, we--in terms of the 
facilities in our schools?
    Mr. Peterson. Yes.
    Mr. Vallas. Let me give you an example. All of our high 
schools, by September of next year, will be fully wired for the 
Internet and we will have literally computers in every single 
classroom. Within two years, all of the elementary schools will 
have at least ten fully-wired, fully-integrated, fully 
technology-equipped classrooms. So what I view as a technology 
infrastructure is having a school with the majority of its 
classrooms fully-wired, fully Interneted with basically 
computer terminals. But what we do is we require that 
technology be integrated into the curriculum and that be a 
supplement to the curriculum, because a lot of times schools 
think, if they are wired for the Internet and they install a 
bunch of computers, that that is going to be a substitute for 
quality instruction.
    So when we design our curriculum and instructional models 
that we make available to all of our teachers, they all have 
technology supplements. So we are really using technology as a 
supplement.
    Mr. Peterson. Going beyond computers and information 
technology, what percentage of your seniors graduate with some 
sort of skill level in some technology other than just 
Information Age?
    Mr. Vallas. You know, I really can't give you that number. 
I would hope that perhaps half, but let me point out that 5 
years ago probably 10 percent of our students graduated. Our 
goal within the next 4 to 5 years, with the mandatory 
technology summer school camps, is to make sure that all of the 
children who graduate have certain basic technology skills, 
because just as we have promotion--we have standards that 
children can be retained for not reaching--we also have 
standards that mandate summer school, and what we have done 
over the past 2 years is we have instituted technology learning 
standards that the students are required to master or they in 
effect will spend 2 or 3 summers in summer school mastering 
those standards.
    So we are confident within the next 4 to 5 years that all 
of our graduates who graduate will have certain technology 
basic skills.
    Mr. Peterson. Thank you.
    Mr. Vallas. Thank you. This is it?
    Mr. Regula. You are on the hot seat. Let me say, I think 
the high degree of interest in what you are doing, if Mr. 
Jackson will help us, I think we will get you back at some 
future time when we have more time.
    Mr. Jackson. Be more than honored, Mr. Chairman.
    Mr. Vallas. We would also love the committee to come out so 
I am not just creating the Potemkin Village; you can see for 
yourself.
    Mr. Regula. Well, that is a possibility, too. Maybe Mr. 
Jackson will persuade us he would be a good host.
    Mr. Vallas. He is an excellent host.
    Mr. Jackson. Anything for you, Mr. Chairman.
    Mr. Regula. I see there is bipartisanship, despite whatthe 
press says.
    Mr. Sherwood. One quick question, Mr. Chairman. When you 
took over and completely changed the culture, were there any 
Illinois State laws that were changed to allow you to do this?
    Mr. Vallas. Oh, yes.
    Mr. Sherwood. In other words, what happened to tenure and 
some of the institutional barriers to change?
    Mr. Vallas. Well, first of all, what the legislature did 
for Chicago only, and Illinois, it is the battle of the NEA 
versus the AFT. Many down-State legislatures basically 
supported those changes being made because it applied to the 
American Federation of Teachers, which is the Chicago teachers' 
union; the down-State teachers' union is the National Education 
Association.
    The changes were as follows: First of all, the mayor was 
given responsibility over the schools and, of course, we were 
given all the resources. We were given control over the 
resources. A lot of the mandates were eliminated, with the 
exception of the special education mandates.
    Thirdly, work rules were, in effect, suspended. Now, tenure 
wasn't eliminated. We still had to go through a very prescribed 
process for removing ineffective teachers, but by eliminating 
basic work rules we were allowed to set the work rules, the 
board was. In effect, tenure within the system was eliminated.
    So if a teacher was removed from one school, they could not 
bounce a less senior teacher from another school. So, in 
effect, there is no intra-district tenure. There is only tenure 
within the individual school. But we are allowed to set class 
size. We are allowed to determine the school day, things of 
this nature. So those things were no longer a part of the 
collective bargaining agreement.
    We were also given the power to privatize. For example, we 
have a very tough zero tolerance policy, and when students 
violate our zero tolerance policy no one is expelled to the 
street. They are expelled to alternative schools.
    They are all private schools that we contract out with. 
Also, when you go out to our high schools, in addition to the 
magnet programs I talked about, we buy classroom space in 
colleges and universities and in technical training 
institutions.
    So if you are a junior or a senior, you can take college 
level courses if you meet the qualifications for dual credit, 
and if you are a junior or senior and you want to get into a 
vocational or technical education area and the school does not 
offer such programs, we will enroll you in a vocational or 
technical education program at city colleges, community 
colleges, suburban community colleges or a private training 
institution. So we have control to basically privatize 
educational services and to purchase educational services at 
private institutions for our children. It is referred to as the 
high school voucher program by some critics out there.
    Anyway, we have that flexibility and it was given to us 
solely by the legislature.
    Mr. Sherwood. Thank you very much. Could you have made this 
change without that authority?
    Mr. Vallas. You know, clearly, the additional authority did 
give us the vehicle to move forward. I like to think that the 
mayor's leadership had a lot to do with that, too, because 
where there is a will there is a way, and certainly, other 
school districts that have been given additional authority 
perhaps not mirroring ours but similar to ours continue to 
struggle in part, because there are leadership issues. I think 
certainly the--we could have accomplished a lot even without 
those additional powers, but the bottom line is those 
additional powers did streamline things for us and it gave us 
additional tools to move faster.
    Let me say this: We are not out of the woods yet. I mean, I 
still have over half of my kids, based on the Iowa test of 
basic skills, reading and computing below national averages. It 
used to be about 20 to 25 percent. I still have one-fourth of 
my children in the bottom academic quartile. It used to be 
close to 60 percent. I still have a drop-out rate that is 13, 
14 percent a year. It used to be 17 percent. So we have a long, 
long, long way to go.
    I like to think that the progress will continue, and the 
progress that you have seen is just the beginning of the best.
    Mr. Regula. Thank you very much for coming.
    Mr. Vallas. Thank you.
    Mr. Regula. You are working toward no child being left 
behind?
    Mr. Vallas. We are trying. Thank you. Thank you, Mr. 
Chairman. Thank you, the committee.
    Mr. Regula. Mr. Jackson, you are going to introduce our 
next witness Mitchell Slater, president of LIFEBeat.
    Mr. Slater.
    Mr. Jackson. Mr. Chairman, I want to introduce three people 
who form the backbone of LIFEBeat, the music industry's fight 
against AIDS.
    Mitch Slater has been a major player in the concert and 
touring industry for over 15 years. Mr. Slater has promoted 
shows at various venues, including Madison Square Garden, the 
Roseland Ballroom, the Beacon Theater, Town Hall and Irving 
Plaza, and has worked on national and international tours for 
such artists at Rod Stewart, Elton John, Pearl Jam, Jimmy 
Buffet, the Who and dozens of others.
    As executive vice president of SFX Entertainment, Mr. 
Slater helped to create the largest event production and 
promotion company in the world, working not only with live 
music but sports and theatrical events as well. Mr. Slater 
currently serves as president of the board of directors of 
LIFEBeat, the Music Industry Fights AIDS. He was instrumental 
in the development of the organization's tour programs engaging 
the involvement of artists such as taken outreach and ticket 
surcharge programs engaging the involvement of artists such as 
Tina Turner and Rod Stewart.
    Cathy Hughes is the founder and chairperson of Radio One, 
Inc., the largest African American owned and operated 
broadcasting company in the Nation. Radio One's value is 
currently in excess of $1 billion, and in 2000 Fortune rated it 
one of the 100 best companies to work for. It was inducted into 
the Maryland Business Hall of Fame. The Washington Post 
describes Ms. Hughes as the voice of the black community, and 
her stations now reach over 12,000,000 listeners daily. I stand 
corrected, 18,000,000 listeners daily.
    Mr. Hoyer. Probably 19 by the time you finish.
    Mr. Jackson. That is great, Steny.
    Radio One is recognized for its intense community 
involvement and Ms. Hughes has been honored with the Lifetime 
Achievement Award from the Washington Area Broadcasters 
Association, the Ron Brown Business of the Year Award by the 
Department of Commerce, and the Baltimore NAACP's Parren J. 
Mitchell Award.
    In April she will receive the National Association of 
Broadcasters Distinguished Service Award. Ms. Hughes currently 
serves on the boards of the Baltimore Development Corporation, 
the Rhythm and Blues Foundation, the Broadcasters Foundation, 
the National Urban League and the Piney Woods School in 
Mississippi founded by her grandfather in 1901.
    Mr. Chairman, Veronica Webb is a multiple-career woman 
whose accomplishments through the past decade are truly 
remarkable. In 1992, Ms. Webb set a precedent for and made 
worldwide fashion history when she became the first African 
American woman to sign a major cosmetics contract, catapulting 
her into the heights previously closed to women of color.
    Ms. Webb has recently completed her first book, a play on 
her name, Veronica's Webb Sight, Adventures in the Big City. 
She is editor at-large in Interview Magazine and is a 
contributing writer for Details, Esquire, Elle, the London 
Sunday Times, and the New York Times Syndicate.
    Veronica made her television debut as a contributing 
reporter on Fox's Front Page and has hosted programs for MTV, 
VH-1, E Entertainment. She has also been a correspondent for 
HBO's Entertainment News, Good Morning America, and the BBC.
    Dedicating her time to many charities, Ms. Webb sits on the 
board of LIFEBeat. Mr. Chairman, on behalf of the subcommittee, 
I welcome Mr. Slater, Ms. Hughes and Ms. Webb.
    Mr. Hoyer. We better pay attention to this one.
    Mr. Regula. Are you all three going to testify?
    Ms. Webb. Yes.
    Mr. Slater. Yes.
    Mr. Regula. So you get about a minute and a half then.
    Okay.
                              ----------                              

                                           Tuesday, March 20, 2001.

                LIFEBEAT, THE MUSIC INDUSTRY FIGHTS AIDS


                                WITNESS

MITCHELL SLATER, PRESIDENT, BOARD OF DIRECTORS (LIFEBEAT) ACCOMPANIED 
    BY: CATHY HUGHES, CHAIRPERSON AND FOUNDER, RADIO ONE, INC.; AND 
    VERONICA WEBB, MODEL, AUTHOR, LIFEBEAT BOARD MEMBER
    Mr. Slater. Thank you, Mr. Chairman and members of the 
committee. Thank you very much for having us here this morning.
    As stated, I am the President of the board of directors of 
LIFEBeat and I want to tell you a little bit about the 
organization, but before I do that I want to tell you about 
some statistics that are continuing to be very concerning and 
alarming to us.
    Fifty percent of all new HIV infections in the United 
States occur in people under the age of 24. Every hour of every 
day, two young people between the ages of 13 and 24 are 
infected with HIV. LIFEBeat has long known the importance of 
reaching young people about HIV prevention.
    The organization has carved a unique niche by effectively 
using the talents and the resources of the music industry to 
educate young people about HIV and AIDS. While serving on the 
board of directors, I have helped engage the touring and 
concert industry in this effort. As the executive vice 
president of SFX Entertainment, I work to ensure venue access 
to LIFEBeat and AIDS service organizations across the country 
so that they could educate concertgoers about HIV and AIDS.
    Artists like N Sync, Tina Turner, Britney Spears, Gloria 
Estefan, John Secada, 98 Degrees, Rod Stewart and Destiny's 
Child have partnered with LIFEBeat by filling public service 
announcements, performing at benefit concerts and world AIDS 
Day Shows and allowing LIFEBeat to have outreach tables as part 
of their tours.
    These efforts have enabled us to reach millions of young 
people across the Nation who may not have had otherwise any 
access to this information.
    A great deal has been accomplished, but there is so much 
more that needs to be done. We must explore all of the 
innovative and nontraditional ways of delivering prevention 
information to young people, especially young people of color.
    It is imperative that the Labor, HHS, Education 
Appropriation Subcommittee provide the increased funding we 
need to support efforts underway at the Centers for Disease 
Control, the Health Resources Administration, and the Substance 
Abuse Mental Health Service Administration. We really can't 
afford to stand by and lose a generation.
    At this point, I would like to turn the microphone over to 
my colleagues here. Ms. Hughes.
    Ms. Hughes. Good morning, distinguished Members of Congress 
and a special good morning to the Honorable Steny Hoyer. My 
company, Radio One, is proudly headquartered in the great State 
of Maryland.
    I am here this morning as a concerned citizen, a member of 
a community that is being greatly affected by the AIDS crisis. 
AIDS is the leading cause of death among AfricanAmericans 
between the ages of 25 to 44. Among teens, African Americans represent 
67 percent of the new HIV infections that have been reported; while 
black teenagers comprise only 15 percent of the total youth population. 
Black radio has always been influential in informing the community and, 
when necessary, mobilizing them into action. Radio One gladly put that 
influence to use when LIFEBeat approached us about assisting them in 
expanding their PSA campaign in order to reach more minority youth.
    It is imperative that we all work together, public entities 
and private corporations, to ensure our young people's future. 
For me, that means working with LIFEBeat and using my stations 
to produce and air messages that urge young people to be safe. 
For you, that means funding those programs and organizations 
that work to reduce the rate of HIV transmission among our 
youth.
    Personal commitment and moral obligation aside, if I really 
look at the bottom line, reaching young people about HIV means 
that the young people who are alive today listening to my radio 
stations will be around tomorrow to continue to listen. The 
bottom line for us as a nation is that the money earmarked for 
youth HIV prevention ensures that we will continue to have a 
nation of healthy, hard-working, taxpaying citizens, who may 
one day run their own companies or quite possibly become 
distinguished elected officials such as yourselves.
    This is only possible, though, if we do what is necessary 
to keep our youth alive and healthy today. Thank you.
    Mr. Regula. Thank you. Ma'am.
    Ms. Webb. Good morning. I would like to thank you for your 
time. Because I have worked in the fashion industry, I saw the 
first wave of HIV and AIDS and I watched people die like flies. 
Current statistics lead me to believe that we may lose another 
generation of beautiful to gifted young people, particularly 
African American and Latino, if we don't take immediate action. 
HIV and AIDS have had a brutal impact on teenagers and young 
adults in the United States. Every hour of every day, two young 
people between the ages of 13 and 24 are infected with HIV. 
African American and Latino youth continue to be 
disproportionately affected. Women of color account for 78 
percent of AIDS cases among young women. The prevention message 
needs to be delivered and it has to be tailored to communities 
that need it the most: young people, especially young people of 
color.
    Kids are smart. You know, they will listen to messages that 
speak directly to them. Organizations like LIFEBeat use methods 
and people teenagers relate to. Our organization needs funds. 
We need resources to continue to effectively reach teens most 
at risk.
    A recent report on youth and HIV and AIDS prepared by the 
Office of National AIDS Policy states that although young 
people account for half, half of the new HIV infections, less 
than a quarter of all HIV prevention funding is directed toward 
this age group.
    Now if we are going to stop the spread of AIDS among young 
people in the United States, then we have to put all of our 
resources toward that goal. We have got to develop partnerships 
with private companies like Radio One who are committed to 
helping their communities, and we have to ensure that Federal 
monies are appropriated to fund youth HIV initiatives, 
especially those targeting teens most at risk.
    I thank you for your time.
    [The testimonies follow:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
    Mr. Regula. Thank you. Any questions?
    Well, thank you all for being here.
    Mr. Hoyer. I just want to make the observation that Cathy 
Hughes said that young people could go into business, be 
entrepreneurs, et cetera, et cetera, and they may even become 
Members of Congress.
    I have three daughters, Cathy. They would all much prefer 
to replicate you than me. I want you to know that.
    Ms. Hughes. Thank you, Mr. Hoyer.
    Mr. Regula. Okay. Our next witness is Michael Cataldo, who 
will be introduced by Mr. Hoyer.
    Mr. Hoyer. Thank you very much, Mr. Chairman. It is my 
pleasure to introduce Dr. Cataldo, who is the vice president of 
the Kennedy Krieger Institute, which, as you may know, is 
located in Baltimore and associated with Johns Hopkins 
University.
    The Institute is a comprehensive resource for children with 
disabilities and is recognized as a research facility for 
health care professionals from around the world; obviously 
associated with a world class, if not the world class, 
institution.
    The Institute treats children with a wide array of 
neurological and developmental disabilities from across the 
State of Maryland and from around the country and around the 
world. I have worked very closely with him on a number of 
things, Rett Syndrome being one, which this committee has been 
on the leadership of looking at. We are making some 
breakthroughs there, but I am enthusiastic about this Institute 
as one of the children's best friends that we have.
    Doctor, thank you very much for joining us. We look forward 
to your testimony.
                              ----------                              

                                           Tuesday, March 20, 2001.

                       KENNEDY KRIEGER INSTITUTE


                                WITNESS

DR. MICHAEL F. CATALDO, VICE PRESIDENT, KENNEDY KRIEGER INSTITUTE
    Dr. Cataldo. Thank you. Good morning, Mr. Chairman, Mr. 
Hoyer, members of the committee. Thank you for the opportunity 
to testify before you today. I am, as you said, Dr. Michael 
Cataldo, Vice President of the Kennedy Krieger Institute in 
Baltimore, Maryland.
    The Kennedy Krieger Institute is an independent research 
institution focused solely on disorders of the brain and 
central nervous system. Brain-related disorders affect 1 in 4 
adults and 1 in 10 children at a cost to society of $400 
billion a year.
    Our mission is to understand the developing central nervous 
system through the study of relationships between genes, the 
brain, and human behavior. The Kennedy Krieger Institute is 
recognized as a research and training center for health care 
professionals from around the world.
    We are also a comprehensive resource for children with 
disabilities, offering evaluation and treatment for a wide 
array of neurological diseases, including Down Syndrome, 
autism, Rett Syndrome, degenerative brain disorders, and mental 
retardation.
    Let me begin by conveying the gratitude of the Kennedy 
Krieger Institute for the support that this committee has 
provided to the National Institutes of Health over the past 
several years. The resources that Congress has appropriated 
support critical research which, if continued, will produce 
advances in prevention and intervention that a decade ago we 
could not even have dreamed possible.
    Accordingly, the Kennedy Krieger Institute endorses the 
recommendation of the Ad Hoc Group for Medical Research 
Funding, which recommends a 16.5 percent increase for NIH, 
resulting in a total budget of $23.7 billion for fiscal year 
2002.
    This funding level is necessary to continue the 
congressional campaign to double the budget of NIH by 2003.
    Now, one important intervention approach for children and 
youth is through the education systems. You heard about 
Chicago.
    The Kennedy Krieger Institute has a school program that is 
a model for successful school-to-work transition. All of our 
students in this program demonstrate a serious disability, and 
50 percent are from families supported by federally-funded 
programs for those living below the poverty level.
    In a partnership with local businesses and community 
groups, we prepare these students with severe learning, 
emotional, traumatic brain injury and developmental 
disabilities for successful postsecondary employment in 
specific career areas, including: information technologies; 
hospitality; construction and manufacturing; business and 
finance; arts and graphics; and communications.
    Support provided by the Department of Education is critical 
for cutting-edge programs such as ours to fully develop model 
systems that can be applied nationwide. Accordingly, the 
Kennedy Krieger Institute respectfully requests $2,000,000 in 
program funding from the Department of Education's Technology 
Innovation Challenge Grant program. With this funding, we can 
make available Internet-based instructional software, 
performance databases and self-directed learning to students, 
teachers, parents, and other professionals.
    Excellence in research and treatment innovation only truly 
benefits all of those in need if the findings can be 
successfully disseminated. Toward this end, the Kennedy Krieger 
Institute has embarked upon a collaboration and formal fiscal 
affiliation with the Marcus Institute located in Atlanta, 
Georgia, to establish a national network of developmental 
services for children with disorders of the brain and their 
families.
    Currently, the Marcus Institute is located in leased office 
space within a professional office park in Atlanta. The new 
Marcus Institute will include a school for children with the 
most acute behavioral challenges so that they can continue 
their educational process while receiving our specialized 
intervention services.
    The proposed 800,000 square foot facility will be located 
between Emory University and the Centers for Disease Control 
and Prevention.
    As part of our collaborative effort, the Kennedy Krieger 
Institute is working with the Marcus Institute, United States 
Congress, and State and local officials in Georgia as we 
establish this state-of-the-art facility in Atlanta.
    Accordingly, we respectfully request $5,000,000 through the 
Health Resources and Services Administration construction 
account to provide assistance with the construction of a new 
state-of-the-art health facility for the Marcus Institute in 
Atlanta, Georgia.
    I would like to conclude my testimony, Mr. Chairman, on a 
personal note. We in the health care profession are motivated 
by the devastating effects of the disorders we attempt to 
understand, prevent and treat, and by the profound difference 
our efforts can make in the lives of parents and their 
families.
    Mr. Chairman, as you assume your new role, we look forward 
to working with you and welcome your support.
    [The testimony follows:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
    Mr. Regula. Thank you. Any questions?
    Mr. Hoyer. No, thank you, Mr. Chairman.
    Mr. Regula. Our next witness will be Terry Anderson. He 
will be introduced by Ms. Pelosi.
    Ms. Pelosi. Thank you very much, Mr. Chairman. It is a real 
pleasure to introduce Terje Anderson to you because since 1987, 
NORA, the National Organizations Responding to AIDS Coalitions, 
has been part of the education program for Congress to 
understand the challenges that HIV and AIDS have presented, and 
advocated some solutions.
    So I am pleased to welcome Terje Anderson, especially on 
this first opportunity for you to hear about NORA. Terje 
Anderson is the executive director of the National Association 
of People with AIDS and co-chair of NORA, the National 
Association Responding to the AIDS Coalitions, both of which 
have been strong advocates and educators of Congress.
    The recent investments that have been made domestically and 
internationally in AIDS and HIV care, treatment, and research 
have strengthened our ability to combat this global pandemic 
and dramatically improved the lives of millions of people 
living with HIV AIDS. It is imperative we do not abandon this 
important commitment.
    The previous panel documented the need very clearly in our 
own country, and the drastic need for prevention.
    In that spirit, I want to thank and congratulate both the 
National Association of People with AIDS and NORA for the 
important role they have played.
    With that, I am pleased to introduce Mr. Anderson. Thank 
you, Mr. Chairman.
    Mr. Regula. Thank you.
    Mr. Anderson.
                              ----------                              

                                           Tuesday, March 20, 2001.

          NATIONAL ORGANIZATIONS RESPONDING TO AIDS COALITION


                                WITNESS

TERJE ANDERSON, CO-CHAIR, NATIONAL ORGANIZATIONS RESPONDING TO AIDS 
    COALITION
    Mr. Anderson. Thank you, Representative Pelosi, Mr. 
Chairman, and members of the Committee.
    As you have been told, my name is Terje Anderson. I am the 
co-chair of National Organizations Responding to AIDS, a 
coalitions of over 175 health, labor, religious, professional, 
and advocacy groups that represent a broad consensus on HIV and 
AIDS-related policy legislation and funding.
    As a broadest-based coalition, NORA understands the 
competing demands that you face as you look at the 
appropriations bill, and the difficult decisions this 
subcommittee and the full committee will be making in the 
months ahead.
    As we have since 1987, we are pleased to share with you our 
views on what is necessary to adequately fund HIV and AIDS 
programs within the Labor/HHS/education spending bill. While 
Federal spending on HIV and AIDS has spread across a large 
number of appropriations bills, the largest bulk of that 
spending is located here in this subcommittee.
    For that reason, I am going to focus on three key areas 
that you will be dealing with as you debate this.
    I am also here to tell you that as a person living with 
HIV, as a recovering injection heroin user, that this epidemic 
is far from over. We have not won the battle against HIV and 
AIDS. It is the leading cause of death for African Americans 
between the ages of 25 and 44, and it is a leading cause of 
deaths for all Americans in this age group.
    It is clear this epidemic is not over when nearly 1,000,000 
Americans are living with HIV, and the number of new infections 
continues to grow each year by at least 40,000. As you have 
heard before, more than half of those infections are occurring 
among people under the age of 25.
    HIV and AIDS is not only devastating our country, but it is 
also devastating many other parts of the world. Right now, more 
than 36,000,000 people are living with this virus in Africa, 
Asia, Central America, the former republics of the Soviet 
Union. We must respond to those.
    NORA believes that a comprehensive and coordinated approach 
must be aggressively pursued to address this epidemic. This 
balanced approach must include significant and appropriate 
resources to stop new infections, to provide quality care and 
treatment, to provide support services for those living with 
HIV and AIDS, to boost current research efforts to find a cure, 
and to address the growing impact of HIV and AIDS in the global 
arena.
    In addition, NORA strongly affirms the unique and critical 
role of the Congressional Black Caucus minority AIDS initiative 
in addressing the disproportionate impact of HIV and AIDS on 
ethnic and minority communities.
    Now, in the third year of funding, this initiative hasbeen 
an aggressive targeted response to the growing crisis among ethnic and 
racial minority communities, and a vital component of the Nation's 
effort to eliminate health disparities among racial and ethnic groups.
    In the area of prevention, the Centers for Disease Control 
plays a critical role in our Nation's effort to comprehensively 
address the HIV epidemic. Our Nation must provide appropriate 
resources to track and significantly reduce the number of new 
infections.
    While NORA recognizes that last year's increase in funding 
for prevention was important, because of flat funding in the 
past and the changing face of the epidemic, our Nation's 
investment in prevention remains inadequate.
    For the coming year, NORA urges increased funding for the 
Centers for Disease Control and Prevention for HIV education, 
surveillance, behavioral research, and prevention activities to 
appropriately implement CDC's stated goal to reduce by half the 
number of new infections by 2005.
    In order to reduce HIV transmission, we urge Congress to 
refrain from imposing restrictions on the use of Federal funds, 
and to allow State and local jurisdictions to use prevention 
funds as they deem appropriate, including, if they choose, for 
access to sterile syringes.
    In addition to these domestics activities, the CDC plays a 
valuable role in our response to the global epidemic. Last 
year, Congress had allocated $104,000,000 to the CDC to address 
the worldwide pandemic. We advocate doubling that amount in the 
coming year, so the care, prevention, and surveillance 
activities can be implemented.
    In the field of care, the Ryan White CARE Act since 1990 
has provided an important Federal investment in care and 
treatment of people living with HIV and AIDS in the United 
States.
    Because of the overwhelming success of this Act, last year 
the community, the Congress, and the administration worked in a 
bipartisan manner to ensure reauthorization of this important 
program. Because of the continuing new infections, because of 
the number of people who are growing living with HIV in this 
country every year, it is important that we increase our 
commitment to the Ryan White CARE Act to assure that all people 
living with HIV and AIDS have access to services, regardless of 
where they live, regardless of who they are.
    Finally, we advocate for the research done by the National 
Institutes of Health and coordinated by the Office of AIDS 
Research as a vital component in our Nation's effort to address 
the HIV epidemic. We recognize the steps that Congress and 
this, and the past administrations have taken to support the 
increase in investment in health research.
    We support the idea of a 16.5 percent increase for NIH 
overall, with the commensurate increase in AIDS research within 
that.
    There are many other programs within the committee's 
jurisdiction, but I wanted to highlight those three. I am happy 
to answer any questions from any members of the Committee.
    [The testimony follows:]


              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]




    
    Mr. Regula. Questions?
    Ms. Pelosi. Mr. Chairman, I want to thank Mr. Anderson for 
his excellent testimony, and thanks for his leadership.
    Mr. Regula. Thank you for coming.
    Our next witness is Carl Dillon, national recruiting 
specialist, Roto-Rooter.
                              ----------                              

                                           Tuesday, March 20, 2001.

                     NATIONAL JOB CORPS ASSOCIATION


                                WITNESS

CARL DILLON, NATIONAL RECRUITING SPECIALIST, ROTO-ROOTER, INC., 
    ACCOMPANIED BY DARREL CARTER, ROTO-ROOTER SEWER AND DRAIN 
    TECHNICIAN AND JOB CORPS GRADUATE
    Mr. Regula. As I understand it, Mr. Dillon, you are a 
graduate of the National Jobs Corps program.
    Mr. Dillon. No, I am not. I have brought Darrel Carter, who 
is.
    Mr. Regula. You have a young man with you who is?
    Mr. Dillon. Yes, sir.
    Mr. Regula. Does he work for Roto-Rooter too?
    Mr. Dillon. Yes, he does.
    Mr. Chairman, thank you for this opportunity to talk about 
Roto-Rooter and the Job Corps. My name is Carl Dillon. I am the 
national recruiting specialist for Roto-Rooter. As an Ohio 
resident, it is a particular pleasure to testify before you.
    Roto-Rooter, America's neighborhood plumber, can be found 
in every community in the United States. It is entirely 
possible the majority of the people in this room have used our 
services.
    Today, Roto-Rooter is limited only by its ability to find 
entry-level employees with the right skills. The competition 
for experienced techs is stiff, and turnover is high. Every 
technician who leaves Roto-Rooter costs us a yearly salary and 
lost business, and the expense of finding and training a 
replacement. Not to make a bad pun, but that adds up to a 
multi-million dollar drain on our company.
    Roto-Rooter has turned to Job Corps as a source of 
qualified entry-level trainees. Job Corps teaches more than 
technical skills, it teaches critical social, employability, 
and customer service skills. Job Corps graduates we have hired 
have a significantly better chance to succeed than other 
employees. That results in a more satisfied customer and a more 
satisfied bottom line.
    If I could leave you with one message today, it is this: 
Businesses need far more employees with the skills and training 
Job Corps provides. We only wish that more students had the 
opportunity to get the training, to get their training needs 
met at Job Corps and come to work for Roto-Rooter.
    We believe that Job Corps is a vital piece of the answer to 
our recruiting needs and an important national training 
program. But do not just take it from me. I am pleased to 
introduce Darrel Carter, a Roto-Rooter sewer drain technician 
in the Baltimore area and a Job Corps graduate.
    [The testimonies follow:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
    Mr. Carter. Good morning. My name is Darrel Carter. First 
of all, I would like to say thank you for your valuable time. I 
also want to say thank you to the committee who pay for Job 
Corps.
    I think back 10 to 15 years ago and I think, wow, I never 
would have been expected to be sitting here talking. The man 
you see here today is not the man I was back then. I had no 
hopes, no dreams for the future, so the present meant very 
little.
    By the time I was 18, I had buried so many of my friends 
that I went out and bought my own little pair of white cotton 
gloves, pallbearer gloves, because the ones at the funeral 
home, they never seemed to fit, or you never had both hands, so 
I bought my own. That is a strange memory to bring with you 
through your childhood, those little white gloves. I was not 
saving up for candy, toys, games, just saving up for those 
gloves.
    If I look back and count the friends that I have laid to 
rest from the madness in the street, they would fill two 
average high school classrooms. That is how many lives. Life 
was sometimes held with little respect. That is what the street 
taught me, and it is still teaching our kids. Scary, isn't it?
    I wanted more than that for myself and for my son. That is 
why I signed up for Job Corps. All my life I heard people say 
they made it in spite of this or in spite of that. I know very 
few people who actually make it in spite of, most make it 
because of. I made it because of Job Corps, I made it because 
of Job Corps staff who trained, counselled, mentored, pushed, 
and sometimes punished me during my stay there. Because of 
them, I learned the skills to succeed.
    I also made it because of Roto-Rooter and the staff, from 
CEO to customer service representatives, who worked with me and 
introduced me into their family. Because of them and because of 
Job Corps and the money used to support it, I made it.
    I stand here before you today a self-sufficient, self-
supporting, taxpaying, voting member of society. I am a proud 
father of a 6-year-old who can be proud of me, who made last 
year over $47,000, and in 7 months will own his own truck.
    Let me leave you with these words, which I have changed a 
little bit. I pray and hope the one who wrote the original will 
understand. Ask not what your children can do for their 
country, ask what your country should do for their children. 
Thank you.
    Mr. Regula. Thank you. What job center did you go to?
    Mr. Carter. I graduated from Potomac in D.C.
    Mr. Regula. Questions?
    Mr. Peterson. When you were in junior high school, were 
there any technical programs that might have interested you? 
Were they even available to you?
    Mr. Carter. Junior high school in Southeast was junior high 
school, survival of the fittest. It was not really a high 
school. I never really saw the inside of a junior high school, 
but maybe 6 months out of the year, maybe. I cannot really tell 
you.
    Mr. Peterson. You don't know what they had?
    Mr. Carter. I could not really tell you what junior high 
school was like.
    Mr. Peterson. Okay. Thank you.
    Mr. Regula. Thank you. We appreciate especially hearing 
from someone who is benefiting from these programs. So many 
times we deal with them in kind of an abstract way. As a matter 
of fact, I was talking to the staff yesterday and they were 
telling me about the National Job Corps, and I discovered there 
are three facilities in Ohio, and there may be more. It does 
really provide a great service.
    You are a good example. It is always heartening to hear 
from someone who has benefited from a program such as this. 
Thank you for coming.
    Mr. Carter. Thank you.
    Mr. Regula. Next, Mr. Jackson will introduce Jean Kouris.
    Mr. Jackson. Mr. Chairman, thanks for the opportunity to 
introduce Jean Kouris and her son, Nathan.
    Jean and Nathan live in Berea, Ohio, and are here today 
representing the Crohn's and Colitis Foundation of America.
    The CCFA is a 34-year-old national organization dedicated 
to finding a cure for Crohn's disease and ulcerative colitis. 
Crohn's disease and ulcerative colitis are chronic inflammatory 
disorders of the digestive tract which afflict approximately 
1,000,000 Americans. These lifelong illnesses cause intense 
pain and frequently require aggressive treatment with steroids 
or invasive surgery to control it.
    Mr. Chairman, at only 7 weeks of age, Nathan became one of 
the youngest children ever diagnosed with Crohn's disease. 
Nathan is now 9 years old, and has demonstrated tremendous 
courage in living with his illness.
    I thank Nathan and Jean for being with us today to share 
their story. I look forward to working with them and the 
subcommittee to enhance NIH research on this devastating 
disease.
                              ----------                              

                                           Tuesday, March 20, 2001.

               CROHN'S AND COLITIS FOUNDATION OF AMERICA


                                WITNESS

JEAN KOURIS, MEMBER, CROHN'S AND COLITIS FOUNDATION OF AMERICA, 
    ACCOMPANIED BY NATHAN KOURIS (SON)
    Ms. Kouris. Thank you, Congressman Jackson.
    Mr. Chairman, thank you for the opportunity to speak with 
you today on behalf of the Crohn's and Colitis Foundation of 
America.
    I am honored today to represent the people of this country 
who suffer from Crohn's disease and ulcerative colitis. These 
are serious diseases that affect the gastrointestinal tract. 
Crohn's and colitis are not fatal, but they can be devastating. 
We do not know their cause and we have no cure.
    I am all too familiar with these diseases because my son 
Nathan is one of the up to 1,000,000 Americans who suffer from 
IBD. Nathan has the dubious distinction of being among the 
youngest of children diagnosed with Crohn's diseases. While his 
age at diagnosis is unusual, the manifestation and course of 
the diseases itself has not been.
    His 9 short years have been a study in endurance, 
determination, the healing power of medicine, and the healing 
power of prayer.
    When Nathan was about 7 weeks old, his sitter told me that 
he had cried inconsolably for most of the day, drawing up his 
legs as if he was in pain. There is something wrong with your 
baby, she told me. I took him to the pediatrician that evening. 
He was smiling and happy on my lap, and the doctor simply said 
that some babies have a harder time separating from their moms 
when they went back to work.
    Shortly thereafter he started passing bloody stools. I was 
again told this was fairly common, and to put him on a lactose-
free diet. But by age 6 months, he had been referred to a 
pediatric gastroenterologist who put him on medication and 
scheduled him for a colonoscopy. When the biopsy results came 
back, I was simply told that he had something not usually seen 
in babies this age.
    Over the next several months, Nathan's condition continued 
to deteriorate, and I became increasingly disenchanted with 
this physician. I first saw the words Crohn's disease when I 
got copies of his biopsy reports to take to another doctor for 
a second opinion. But while we were waiting for that 
appointment, Nathan, who was now 11 months old and 
developmentally normal in every other way, became so weak he 
could no longer stand.
    Three months later, Nathan was put on total parenteral 
nutrition, a special liquid diet that was given intravenously. 
Around this time, I remember saying to the doctor, I am afraid 
he is going to die. She said, I am not going to say he won't, 
but we are a million miles away from that now. It was the right 
thing for her to say to me as a mother, but I learned later 
that she, too, had cried privately, afraid that he was not 
going to make it.
    For the next 9 months, I kept a bag packed ready to head to 
the hospital if one of his twice daily temperature readings was 
elevated, a trip I made, because he spent more than 90 days in 
the hospital in 9 months time.
    We have endured the comments of unknowing strangers like 
the woman who referred to him as a baby on a leash, an i.v., 
and one who scolded my husband for overfeeding that poor child. 
The reality was that he was seriously malnourished, but so 
bloated from the TPN and steroids that his eyes had become mere 
slits, as you have seen in the photograph.
    Nathan is 9 now, and has achieved a measure of medical 
stability. Last summer for the first time in his life, he was 
able to go 3 months between doctor appointments. He plays 
baseball, and does all the things that most 9-year-old kids do.
    I know that throughout his life he will have good times and 
not-so-good times. Nathan has the spirit of a warrior, and that 
is what helps him get through the tough days.
    I envision a world without Crohn's disease and ulcerative 
colitis. I hope you do, too. If we are to find the cause of and 
cure for IBD, we must investigate all of the exciting 
possibilities that are being made known to us.
    To take advantage of these opportunities, CCFA has 
developed longstanding partnerships with NIH and the CDC.
    We respectfully request four things of this subcommittee: A 
16\1/2\ percent increase for the National Institute ofDiabetes 
and Digestive and Kidney Diseases, and the National Institute of 
Allergy and Infectious Diseases, including a corresponding increase for 
inflammatory bowel disease research at both institutes; second, the 
establishment of a nationwide surveillance program at the Centers for 
Disease Control and Prevention to determine the true prevalence of 
inflammatory bowel disease; third, $15,000,000 for CDC's National 
Colorectal Cancer Screening Awareness Program; and fourth, the 
establishment of an inflammatory bowel disease research and 
surveillance coordinating committee, to ensure that the Federal 
government has a focused and coordinated plan to address IBD.
    Although we have made significant progress in recent years, 
the fight against Crohn's disease and ulcerative colitis, IBD 
remains among the most challenging disorders affecting the 
digestive tract.
    IBD patients and their families are pinning their hopes for 
a better life on medical advancements made through NIH and 
CCFA-sponsored research. By working together, we have begun to 
alleviate the intense pain suffered by people with IBD, but 
there is a great deal more that needs to be accomplished.
    Our progress thus far gives us tremendous hope for the 
future. However, the study of new and promising research 
pathways depends upon increased Federal funding for IBD 
research and treatment.
    Mr. Chairman, thank you for the opportunity to present the 
views of the Crohn's and Colitis Foundation of America. We look 
forward to working with you and your staff. I would be happy to 
answer any questions you may have.
    Mr. Regula. Thank you. Any questions?
    Nathan, we are happy that you came. I know you hated to 
miss a day of school. Maybe two days.
    Where do you live, Nathan?
    Mr. Kouris. Berea, Ohio.
    Mr. Regula. There are a lot of Ohio witnesses here.
    You are up there near the Cleveland Airport. Are you going 
to see the sights while you are in town?
    Mr. Kouris. Yes.
    Mr. Regula. Good. You will have a lot to tell your friends 
back at school when you get back there. Thanks for coming.
    Nathan, a special thank you to you. Maybe you will help 
some other young person have an easier time than you have. 
Thank you.
    [The testimony follows:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
    Mr. Regula. Next, Ms. Pelosi is going to introduce Alma 
Lowry, and then Ms. Rivers, I think you are in the audience, 
and we will come to you next.
    Ms. Pelosi. Thank you, Mr. Chairman.
    Moving right along with these very impressive witnesses 
today, the committee is so wonderful, and it is such a 
privilege to serve on it.
    I am pleased to present to the committee and welcome Alma 
Lowry, who is with the Maurice and Jane Sugar Law Center for 
Economic and Social Justice. That is a project of the National 
Lawyers Guild created to represent low-income communities and 
communities of color faced with environmental justice issues.
    Mr. Chairman, this has been a very important issue for us 
in our community, and in the last several years, we have 
increased the funding at the environmental health project at 
CDC from $7,000,000 to almost nearly $50,000,000, $46,000,000 
last year, and have hopes for the future.
    But the issue of environmental justice is one that has been 
with us for a while and looms, I can say this with great 
experience from California, even greater on the horizon.
    Ms. Lowry is here to testify today to highlight the 
continuing need for basic research in the causal links between 
cumulative exposures to environmental pollutants and the public 
health of those communities most heavily burdened.
    I am pleased to welcome you. Thank you for being here.
                              ----------                              

                                           Tuesday, March 20, 2001.

                   MAURICE AND JANE SUGAR LAW CENTER


                                WITNESS

ALMA LOWRY, ENVIRONMENTAL JUSTICE STAFF ATTORNEY, NATIONAL LAWYERS 
    GUILD, MAURICE AND JANE SUGAR LAW CENTER
    Ms. Lowry. Thank you. Good morning. Thank you for the 
chance to speak here today.
    As Representative Pelosi said, my name is Alma Lowry. I am 
the environmental justice staff attorney at the Guild Law 
Center in Detroit, Michigan. I am here to call your attention 
to the continuing need for additional research on the health 
effects of cumulative exposures to environmental pollutants, to 
ensure the protection of those vulnerable and heavily burdened 
communities that our organization represents.
    The Guild Law Center works with low-income communities and 
communities of color that are faced with disproportionately 
high exposure to environmental hazards. These communities 
believe, and we are convinced, that they are being poisoned by 
their environments, and that regulatory agencies are not 
protecting them.
    Having finally recognized that disparate exposure are a 
reality, the Environmental Protection Agency and many State 
agencies are now telling our clients, do not worry, this 
excessive exposure is not hurting you. Essentially, these 
agencies assume that compliance with certain environmental laws 
means that there will be no unreasonable harm to the community 
and that there is no environmental justice challenge to be 
made, no matter how many pollutants are being poured into that 
area.
    Our clients are now left with the burden of rebutting this 
assumption, and in trying to do so, they are faced with three 
major obstructions that have stymied even the regulatory 
agencies: inadequate baseline data on actual exposure levels, 
inadequate models to estimate the cumulative effects of 
exposure to multiple toxins; and insufficient information on 
the tolerances of vulnerable subpopulations.
    The research needed to answer these questions is nearly 
impossible for our clients. More importantly, we believe that 
it is not their job. Given the important public health 
implications and the Federal agencies rules in setting these 
levels that are assumed to be safe, we believe that Federal 
action is warranted to ensure that those communities most at 
risk are actually being protected.
    We are asking for additional funding in three specific 
areas. First, additional efforts are needed to monitor exposure 
to environmental contaminants and the potential health effects 
of those exposures.
    At the moment, we simply do not know the exposure levels in 
the communities that we represent, let alone whether those 
levels are safe.
    Mr. Regula. Are you covering the whole, broad spectrum of 
pollutants that have an impact on people, or does your group?
    Ms. Lowry. Our group works with communities that are 
burdened with many different toxins, from abandoned brownfield 
sites to air emissions.
    Mr. Regula. So it is not any specific one that you are 
addressing, but helping communities with whatever their problem 
might be?
    Ms. Lowry. Yes.
    Mr. Regula. Thank you.
    Ms. Lowry. For example, as far as monitoring goes, fewer 
than 50 locations in the United States regularly monitor the 
level of hazardous air pollutants in the ambient air. Without 
this kind of baseline data, environmental and public health 
experts cannot begin to correlate observed health effects with 
potential environmental causes.
    For that reason, we are suggesting expanding the 
environmental monitoring, health surveillance, and health 
disparities research already being conducted by the CDC and the 
National Institute for Environmental Health Sciences.
    Secondly, once exposures are better understood, research is 
needed to develop a working model to estimate the effects of 
cumulative exposure to multiple toxins. The communities that we 
represent are being bombarded daily by many different 
environmental toxins from many different sources, and their 
health is affected by the sum total of those exposures. Yet, 
most environmental agencies do not conduct true cumulative 
impact analyses in their permitting decisions because there is 
simply no accepted, scientifically defensible model for 
estimating the cumulative effects of exposures to multiple 
toxins. We now ask this subcommittee to allocate resources to 
develop such a model.
    Last, research is needed on the unique vulnerabilities of 
environmental justice communities to determine if the generic 
exposure limits that are currently in place are adequately 
protective.
    Although many things may make people vulnerable to 
environmental pollutants, our clients are often most concerned 
with the special vulnerability of their children, who already 
suffer more often from elevated lead levels and high asthma 
rates. The toxins to which these children are exposed may cause 
additional cancers, respiratory problems, and will 
fundamentally damage a child's ability to learn and to 
concentrate.
    Congress has already recognized the unique vulnerability of 
children in passing the Food Quality Protection Act of 1996. We 
urge this subcommittee to commit additional resources to 
research on children's susceptibility to those environmental 
toxins that are most often encountered in the ambient air and 
on brownfields sites.
    In closing, I would like to say that the research agenda we 
are discussing here is really a critical issue. It deserves 
consultation with a wide range of public health experts, 
community activists and advocates who can give you a broader 
perspective on the issue.
    I hope this subcommittee will make the necessary commitment 
to develop and fund this agenda. I think the health and well-
being of many communities of color and low-income communities 
depends on it.
    Thank you.
    [The testimony follows:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
    Mr. Regula. Thank you.
    Questions?
    Ms. Pelosi. Thank you so much.
    Mr. Regula. Do you want funding to go to CDC and possibly 
NIH----
    Ms. Lowry. There are many programs within CDC and the 
National Institutes of Environmental Health Sciences. There are 
already eight centers for the study of specific diseases or 
environmental problems children have, particularly asthma and 
neurotoxic disorders.
    Mr. Regula. Are the services of your group sought by 
communities? They come to you and ask you to give them help?
    Ms. Lowry. Yes. We help them with technical issues, with 
legal issues, the permitting process, that kind of thing.
    Ms. Pelosi. Mr. Chairman, if I may add to this, what this 
initiative is part of is a broad public-private nonprofit 
initiative to see the link between environment and health 
issues. It has been our heavy focus. We had our one and only 
issue hearing in this committee. Mr. Porter called it on this 
issue in the last Congress.
    So it has been a very important issue to us, and every 
piece of it, it strikes, obviously, disproportionately in the 
minority communities, because that is where some of this 
abounds. So the Guild Law Center is very important to all of 
this.
    We will talk some more about it. I have been on the 
committee a long time. It is the only issue hearing that we had 
in that long time. So I look forward to continuing our 
conversation.
    Mr. Regula. Thank you for coming.
    Our next witness will be introduced by Representative Lynn 
Rivers from the State of Michigan.
    Ms. Rivers? Dr. Smokler, is that correct?
    Dr. Smokler. Smokler.
    Mr. Regula. We are pleased to have you come and introduce 
your guests, Ms. Rivers.
                              ----------                              

                                           Tuesday, March 20, 2001.

                          NEPHCURE FOUNDATION


                                WITNESS

HON. LYNN N. RIVERS, A REPRESENTATIVE IN CONGRESS FROM THE STATE OF 
    MICHIGAN
    Ms. Rivers. Thank you, Mr. Chairman: I am pleased to 
introduce Dr. Irving Smokler, a community leader from Ann 
Arbor, Michigan, and one of my constituents.
    Dr. Smokler is here today to discuss the serious and 
debilitating kidney disease called glomerular injury, which 
affects thousands of people, primarily children and young 
adults.
    This devastating condition involves damage to the filtering 
mechanisms of the kidneys, and at this point in time, is 
irreversible. You may be aware, Mr. Chairman, of high profile 
individuals such as Miami Heat basketball player Alonzo 
Mourning's kidney disorder. He, too, suffers from glomerular 
injury.
    Dr. Smokler is a man of passion and commitment. He is here 
to tell you about this disease which has had an impact on his 
family, and also to talk to you about the NephCure Foundation, 
which he founded.
    This is a group of parents, patients, and scientists 
dedicated to increasing funding research and raising public 
awareness about glomerular injury. Dr. Smokler is a 
distinguished faculty member in the psychiatry department of 
the University of Michigan, and has made a significant 
contribution to the education of hundreds, if not thousands of 
young Americans.
    I am proud to represent such a fine individual as Dr. 
Smokler, and I appreciate the fact that he took time out of a 
very busy schedule to talk with you about this important issue. 
Thank you.
    Mr. Regula. Thank you.
                              ----------                              

                                           Tuesday, March 20, 2001.

                          NEPHCURE FOUNDATION


                                WITNESS

DR. IRVING SMOKLER, PRESIDENT, NEPHCURE FOUNDATION, ACCOMPANIED BY BRAD 
    STEWART, FATHER
    Dr. Smokler. Thank you, Congresswoman and distinguished 
committee members.
    I would like to tell you today about a devastating disease 
so complex and mysterious that even many physicians are unaware 
of its seriousness. It has several technical names, but it 
alters and often destroys the tiny filtering units in the 
kidney, the glomerulus. We call this problem glomerular injury. 
Not heard of this disease, basketball people, Shawn Elliott, 
Alonzo Mourning, they have this disease.
    Since my son was 11 months old, he has battled a severe 
form of glomerular injury, something called FSGS. He is a lucky 
one. He is now 24 years old and he is in remission. 
Unfortunately, 80 percent of those in his situation lose their 
kidneys or their lives by the age of 5. He is a survivor. There 
are not a lot of survivors here.
    Glomerular injury strikes tens of thousands of young 
people, often forcing them into costly and disruptive dialysis 
or kidney transplant. It drains families and drives up health 
care costs. The insidious thing about this disease is that the 
transplanted kidney sometimes gets the disease, too.
    With another form of it, nephrotic syndrome, first, the 
child's face swells up. We have a before and after over there. 
You have also got it in your packages in our brochure. 
Shockingly, physicians too often misunderstand the symptom and 
misdiagnose. We were told my son had allergies. For a long time 
he had allergies.
    No one really knows what causes glomerular injury, and no 
one knows how to cure it. Cases are rising alarmingly, and 
disproportionately among African Americans and Hispanics.
    As our Foundation works to enhance and educate and raise 
funds, there is new hope. Researchers are excited over recent 
findings that seem to hold a clue of glomerular injury. 
Finally, after 20 years, they are making a little bit of 
scientific progress.
    There is something that members of this committee can do. 
The NIDDK seeks funds for clinical trials to begin testing 
various treatments for 400 FSGS patients. Scientists tell us we 
need more funds for basic science behind these trials. 
Scientists need to study the tissues and fluids from these 
patients to advance their studies into the molecular forms of 
FSGS.
    We humbly urge all of you to hear these researchers who 
seek to increase the FSGS program, add to the funding, add to 
the basic research that can move us closer than ever to saving 
the kidneys of so many young people.
    Mr. Chairman, Brad Stewart, to my right, is here today 
because his daughter, Melanie, is too sick to make the trip to 
Washington. I am going to ask him to read her statement.
    Mr. Stewart. ``Mr. Chairman, my name is Melanie Stewart. I 
live in Glenmore, Pennsylvania. I am 13 years old and have had 
FSGS since I was 6.
    ``Until a year ago, I spent most of my life in a hospital 
or hooked up to a dialysis machine for 8 hours every day. My 
kidneys died last year, so my dad gave me one of his. I have 
done my best to keep it by taking 20 pills a day, fighting off 
infections, hemorrhages, and a blood clot in my heart.
    ``The kidney my dad gave me is failing. There are thousands 
of kids like me who would like a chance at a normal life. For 
all of us, I am asking for your help in finding a cure for this 
disease. Thank you for listening.''
    My daughter was not able to be here today because last 
Wednesday she lost her kidney to FSGS. Thank you.
    Dr. Smokler. Mr. Chairman, members of the committee, thank 
you for your time.
    [The testimony follows:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
    Mr. Regula. Thank you very much.
    Any questions?
    Mr. Jackson. Just one, Mr. Chairman.
    FSGS, I gather that is being studied presently at the 
National Institutes of Health, and you mentioned one of our 
agencies. Is that the kidney agency that studies it?
    Dr. Smokler. Yes, Congressman, NIDDK.
    Mr. Jackson. Are you aware of what NIDDK presently spends 
on FSGS research and/or whether or not they have sufficient 
medical research teams who are presently pursuing this? You 
indicated that you wanted to begin a review process of possibly 
400 FSGS patients.
    Dr. Smokler. That is correct. There has been a session 
which has explored the possibility of doing this, and they need 
more money. They do have some money for this research. They 
need more money from Congress at this time to continue this 
research.
    Mr. Jackson. Based upon your knowledge and study of this 
particular illness, what size of increase would you support at 
that particular agency that would accomplish that clinical 
trial?
    Dr. Smokler. We are supporting the size--the 16.5 percent 
increase to NIH and to NIDDK. We are also urging that this 
committee specify that an increased amount of funds, perhaps 
$2,000,000 to $3,000,000, be directedspecifically to glomerular 
research.
    Mr. Jackson. Two to 3,000,000. You have a great 
representative in Ms. Rivers. There is no doubt in my mind that 
we will do everything we can in this committee with her 
assistance.
    Mr. Peterson [presiding]. Next, we will hear from Dr. Man 
Wai Ng, residency director, pediatric dentistry, Children's 
Hospital, Washington, DC.
                              ----------                              

                                           Tuesday, March 20, 2001.

                AMERICAN ACADEMY OF PEDIATRIC DENTISTRY


                                WITNESS

DR. MAN WAI NG, RESIDENCY DIRECTOR, PEDIATRIC DENTISTRY, CHILDREN'S 
    HOSPITAL, WASHINGTON, DC
    Dr. Ng. Good morning, Mr. Chairman, and members of the 
subcommittee. I appear today on behalf of the American Academy 
of Pediatric Dentistry, and I am substituting for Dr. Paul 
Casamissino, who is currently the President of our 
organization.
    He regrets not being able to be here today, but thank you 
for this opportunity to testify on fiscal year 2000 funding 
levels for programs critical to improving the oral health of 
our Nation's children.
    I see firsthand every day the silent epidemic of oral 
disease among the Nation's poorest children. This was 
documented in the Surgeon General's Health Report on Oral 
Health in America released last year.
    This morning I want to show you the human dimension of this 
problem. The photos we see there show decay or caries, the 
impact of cellulitis, which is inflammation caused by a rampant 
infection, and the desired outcome: either a health mouth 
through preventative practices, or proper restorations; in this 
case, stainless steel crowns on primary or baby teeth.
    Children with ``baby bottle'' tooth decay and early 
childhood caries have infection, pain, and suffering. If these 
children are hurting due to dental disease, they cannot pay 
attention in school. They cannot eat, sleep, or grow normally. 
Their pain causes sleepless nights for them as well as their 
parents, and oftentimes there are fruitless searches for help.
    As a past Surgeon General has stated, no child can be 
considered healthy without oral health.
    Please look again at the first picture. This is 
representative of 25 percent of children who have 80 percent of 
the oral health disease. We see this every day at Children's 
Hospital here in Washington, DC, the Nation's capital. Oral 
disease is the most common chronic childhood disease, more 
prevalent than asthma.
    The 18-month-old baby and others like her will have been in 
pain for weeks before help is sought. If she is in pain on the 
day that she is seen, then we will remove these teeth using 
only local anesthesia. If she is free of pain temporarily, we 
will add her to the 200 and more children waiting to go to the 
operating room at our Medical Center to treat the extensive 
decay.
    The next picture shows a young man who was treated by Dr. 
Paul Casamissino. He was hospitalized for 5 days with a 
preventable dental abscess. First, it was important to keep the 
abscess from destroying his vision. Once the infection was 
under control, he had to be placed under general anesthesia to 
remove the infected tooth. The cost to taxpayers in this case 
was $20,000.
    We need your help, Mr. Chairman, in three areas:
    Number one, after 30 years of a broken system, HCFA has 
finally shown leadership on making State Medicaid dental 
programs work. Their recent letter to State Medicaid directors 
was the most significant initiative HCFA has ever taken to 
promote oral health. Please support HCFA's efforts here to also 
ensure that they provide permanent funding for a chief dental 
officer position.
    Number two, the need for more pediatric dentists is well 
documented. This is as serious as the crisis we are hearing 
about in nursing now. Although pediatric dentists make up only 
2 percent of all dentists, we take care of 30 percent of all 
Medicaid patients.
    Please support $9,000,000 for the HRSA Bureau of health 
Professions Pediatric and General Dentistry Training Grant. 
Programs around the country desperately need start-up or 
expansion funds.
    We at Children's Hospital here in Washington, DC, in fact, 
are applying for the HRSA pediatric dentistry training grant in 
order to expand our residency program, and we are looking to do 
this to have a primary care presence in the community.
    Number three, the HRSA HCFA oral health initiative requires 
a line item of $20,000,000 to support these activities, 
including programs that were authorized by Congress in the 
Children's Health Act of 2000.
    We also ask for $17,000,000 for the CDC fluoridation 
school-based sealant programs authorized in this Act. It will 
require a true public-private partnership to solve this 
problem, so please act boldly to improve the oral health care 
of our Nation's most vulnerable children.
    Thank you for allowing me to speak to you today. I will be 
happy to answer any questions.
    [The testimony follows:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
    Mr. Peterson. I would be interested in seeing a copy of 
HCFA's--if you have it, if you could give us--letter to the 
State Medicaid programs.
    As a State Senator, when I chaired the Committee on Health 
that was one of the major issues, that the Medicaid payment in 
Pennsylvania was inadequate for the basics. It paid for other 
services that some dentists felt were not as appropriate, but 
it did not pay appropriately for the basic. So it was not 
uncommon in my rural district to have counties that no dentist 
would serve Medicaid patients in.
    Dr. Ng. Yes, and it is a problem here.
    Mr. Peterson. I would be interested to know what HCFA has 
ordered in the States.
    Do you support fluoridation of community water supplies?
    Dr. Ng. I do. I personally believe that communities should 
decide for themselves.
    Mr. Regula. Would you recommend it to your community?
    Dr. Ng. The community here----
    Mr. Peterson. Where you live and are raising your family, 
would you recommend fluoridation of the public water supply?
    Dr. Ng. I would, yes.
    Mr. Peterson. All right. Thank you.
    Questions?
    Mr. Jackson. I guess my question piggybacks on yours, Mr. 
Chairman, about fluoridation. Why would you support a standard 
in one community that would be fluoridated and not a standard 
in another community? It would appear to me that we would want 
a national standard of high quality water that could be 
fluoridated. Is that a problem, or do you think it should be 
something that should be handled only by the locals?
    You are coming to Congress because we have, I assume, a 
national problem here. Therefore, we need to raise the national 
standard of quality water.
    Dr. Ng. We do support fluoridation of water systems around 
the country. In terms of what individual communities do, 
perhaps that is left up to the jurisdictions of the communities 
themselves.
    But there is ample scientific evidence to support that 
fluoridation does work, has dramatically helped to reduce the 
caries rate in children since water systems were first put in.
    Mr. Jackson. More often than not, the unfluoridated systems 
will be rural areas, they will be areas like Appalachia, they 
will be poor areas that their local counties and local water 
authorities will make budgetary determinations completely 
related to balancing their books that do not necessarily 
incorporate standards that would exist in more affluent areas.
    So if the gap will ever be closed between those that are 
affluent and those that are not, certainly Congress should have 
a greater role in terms of determining and mandating that the 
systems achieve a high quality standard because, obviously, 
more often than not, these are indigent children and indigent 
families that end up with the absence of care. So I think we 
are saying the same thing here, we want a national high 
fluoridated standard.
    Dr. Ng. Absolutely.
    Mr. Peterson. Mr. Sherwood?
    Mr. Sherwood. There is something I am missing. We 
understand how bad dental caries are and what a problem oral 
health is in poor and underserved communities here.
    In the last few years, I spent some time in Africa. I made 
friends with some Zulu tribesmen that were our trackers and our 
guides. These men had grown up in villages with no sanitation. 
They lived in the most rudimentary conditions. They were 40 
years old, and they all had beautiful white teeth.
    What are we missing? What are we doing wrong? They had no 
care. Yet, their diet or something was very successful.
    Dr. Ng. I can tell you from my experience being here in the 
Washington, D.C. community that, for example, we see a large 
population of immigrants from the Latin American countries. 
When they emigrate to this country, they haveaccess to better 
food, perhaps better standard of living compared to where they come 
from, and there is just more availability of sugar.
    Specifically, a lot of the kids are put to bed with bottles 
filled with juice and milk. So there is a lot of education that 
is necessary, but we feel that early screening by age 1 is very 
important to diagnose children who are at risk for these 
problems and to be able to prevent disease from developing, or 
at least be able to treat these problems without severe costs 
for both the child as well as for the infrastructure.
    Mr. Sherwood. So isn't the educational component of this, 
then, very, very important? We have prenatal programs and 
delivery programs. Are we missing the education boat here with 
young mothers or new measures?
    Dr. Ng. It is a combination of a lack of education, but 
there is also a significant lack of access to care, to dental 
care.
    Mr. Sherwood. I understand. I understand there is lack of 
access to care. But I wanted to get something on the testimony 
about what we could do to help ourselves prevent the problems.
    Dr. Ng. Right. Education is one piece, and early dental 
screening is another piece. Also toothbrushing starting at a 
very young age would absolutely be beneficial, along with 
flossing. We recommend reducing the frequency of snacking in 
between meals, because we now know that it is not necessarily 
what you eat, but how often you eat that is potentially the 
bigger problem. So we recommend brushing between meals.
    Mr. Sherwood. Thank you.
    Mr. Peterson. If I could just add to that, so his friends 
who did not have sweet sodas and candy, pieces of candy to 
nibble on all day long, is that the answer?
    Dr. Ng. No. I think education is a very important piece.
    Mr. Peterson. But they didn't get the education.
    Dr. Ng. They didn't have the access.
    Mr. Peterson. To sweetened sodas? If you are drinking 
sweetened sodas and nibbling on candy all day, you are giving 
your teeth a rough time?
    Dr. Ng. You potentially can give your teeth a hard time.
    Mr. Peterson. Okay. Thank you very much.
    Dr. Ng. You are welcome. Thank you.
    Mr. Peterson. Next, I would like to call on the gentleman 
from Illinois, Mr. Jackson, who would like to introduce our 
next speaker.
    Mr. Jackson. Thank you, Mr. Chairman.
    Mr. Chairman, thank you for allowing me to introduce Judy 
Vredenburgh.
    As many of our colleagues on the subcommittee know, 
Congresswoman Nita Lowey serves on the national board of Big 
Brothers Big Sisters of America, and she regrets that she was 
unable to be here to do the honors.
    I have been fortunate to get to know the organization much 
better over the last year. Last June, when the Federation had 
its national conference here in Washington, I was pleased to 
join former Pittsburgh Steeler Greg Lynn Swann, now Hall of 
Famer, and former Senator Dan Coats in hosting the youth forum.
    Judy joined Big Brothers Big Sisters as CEO in June of 
1999, and she has assured me that she is committed to 
identifying effective, innovative ways of bringing Big Brothers 
Big Sisters' proven brand of mentoring to the largest possible 
number of children in need without sacrificing quality.
    Judy is here today to update us on the Federation's school-
based mentoring model. On behalf of the subcommittee, welcome. 
We look forward to hearing from you. Thank you, Judy.
                              ----------                              

                                           Tuesday, March 20, 2001.

                  BIG BROTHERS BIG SISTERS OF AMERICA


                                WITNESS

JUDY VREDENBURGH, CEO, BIG BROTHERS BIG SISTERS OF AMERICA
    Ms. Vredenburgh. Thank you, Mr. Jackson. Good morning, Mr. 
Chairman and fellow Pennsylvanian, and good morning, Mr. 
Sherwood, as well. I am pleased to have the opportunity to 
appear before the subcommittee today.
    Together, we have an incredible opportunity to help 
hundreds of thousands of children in need grow up to become 
competent, productive, contributing men and women.
    I am Judy Vredenburgh, President and CEO of Big Brothers 
Big Sisters of America, the Nation's premier mentoring 
organization with 500 local affiliates throughout all 50 
States.
    The Federation currently serves an average of 200,000 
children and youth and their families a year. In fact, we know 
that the one-to-one programs work as a strategy to support at-
risk youth. In 1995, public/private ventures released its 
landmark impact study, which found that little brothers and 
little sisters were 46 percent less likely to begin using 
illegal drugs, 27 percent less likely to begin using alcohol, 
52 percent less likely to skip school, would be more confident 
of their performance in schoolwork, one-third less likely to 
hit someone else, to engage in violence, and indeed, the 
children got along much better with adults and their families.
    Since 1994, we are proud to say that we have served 
millions of children through our community program of one-to-
one professionally supported relationships with volunteer 
caring adults. We have been contributing to the long American 
tradition of voluntarism.
    The Federation's budget is largely--in fact, it is 96 
percent supported through private philanthropic endeavors from 
individuals, foundations, and corporations. So the support of 
the subcommittee, that the subcommittee has provided our 
school-based venturing program over the last 2 years, has been 
particularly meaningful. Your funding has enabled 323 of our 
local agencies to expand or implement for the first time this 
exciting new school-based program model.
    I am pleased to share with you all that the Federation met 
its commitment to the 1997 President's Summit on America's 
Future, our commitment to double the number of mentoring 
relationships from 100,000 to 200,000 by the year 2000. A 
significant percentage of this doubling came from the expansion 
of our school-based mentoring programs.
    This alternative model remains true to the one-to-one 
approach, but changes the venue of the mentoring relationship 
and offers an alternative way for volunteers to serve.
    School-based mentoring has many benefits that make it a 
strong complement to our traditional community-based approach.
    First, it attracts bigs who, because of life's 
circumstance, might not be interested in volunteering. 
Secondly, and most importantly, because littles are referred by 
their teachers, there is a potential to reach children whose 
parents lack the awareness of or inclination to involve their 
children in a mentoring program.
    Third, when bigs and littles meet in one location, such as 
a school, the case management process is less time-consuming 
and more cost-effective.
    Finally, this approach links the mentor to the school 
environment, making education an essential part of the 
mentoring relationship.
    And, of course, our school-based mentoring program has a 
side benefit of bringing citizens into the schools for them to 
observe the education system firsthand.
    We have found through our rigorous research that the 
children involved in school-based mentoring of the Big Brothers 
Big Sisters program, 64 percent develop more positive attitudes 
towards school, 58 percent actually improve their grades, 60 
percent improve their relationships with adults and peers, 62 
percent were more likely to trust their teachers, and 64 
percent developed higher self-esteem. These are impressive 
results.
    Of the funding Big Brothers Big Sisters of America has 
received from the Department of Education over the past 2 
years, 100 percent was and will be distributed directly to our 
local agencies for their expansion of school-based mentoring, 
and directly serve increased incremental numbers of children. 
These funds were distributed in small increments that required 
a minimum of a one-to-one match from the local community, 
thereby allowing more agencies to begin a school-based program, 
and maximizing the Federal funds with leveraged private 
dollars.
    Because of the proven effectiveness of our one-to-one 
mentoring program, Big Brothers Big Sisters of America is on a 
path to increase the number of children served to a minimum of 
1,000,000 annually by 2010. There are roughly 9.4 million 
children at risk in this country, and we are determined to 
bring Big Brothers Big Sisters to a minimum of 10 percent, 
1,000,000 of those children annually.
    In order to achieve this ambitious objective, we are 
developing partnerships with schools on the one hand and 
mentor-rich organizations on the other hand, companies, service 
organizations, African American fraternities, churches, et 
cetera, as part of a comprehensive and strategic growth plan, 
which calls for one-half to one-third of our new matches to be 
site-based and school-based.
    Big Brothers Big Sisters is asking that you again provide 
the Department of Education with sufficient funding to continue 
its support of our impactful school-based mentoring program.
    Mr. Chairman, please note that any Federal funding thatthis 
subcommittee is able to allocate for our school-based mentoring program 
will be matched at the national and local level with private dollars at 
a rate of at least one-to-one. That would be a minimum.
    Thank you again, Mr. Chairman, for the subcommittee's 
continued support. We appreciate it.
    [The testimony follows:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
    Mr. Peterson. I would just like to thank you and 
congratulate you. I think this is a program that reaches a lot 
of young people.
    Any questions?
    Mr. Jackson. No, sir.
    Mr. Sherman. No, thank you.
    Mr. Peterson. Thank you very much.
    Next, we will hear from Dr. Jeff Dalston, President of the 
Association of University Programs in Health Administration.
                              ----------                              


                                           Tuesday, March 20, 2001.

      ASSOCIATION OF UNIVERSITY PROGRAMS IN HEALTH ADMINISTRATION


                                WITNESS

DR. JEPTHA DALSTON, PRESIDENT, ASSOCIATION OF UNIVERSITY PROGRAMS IN 
    HEALTH ADMINISTRATION
    Mr. Dalston. Mr. Chairman, members of the Subcommittee, the 
subject is management and leadership in health care 
organizations. Thank you for the opportunity to testify before 
you today. My name is Jeptha Dalston. I am President of the 
Association of University Programs in Health Administration and 
its accrediting body.
    Ours is a not-for-profit association of approximately 130 
universities, practitioners, and health care organizations 
dedicated to improving the quality of health care management.
    As this subcommittee well knows, our health care system is 
changing at a rapid pace, and in many ways is in deep 
difficulty. Fee-for-service is now virtually gone, managed care 
in its various iterations has replaced it, the system has 
become more complex and has undergone a virtual transformation, 
and continues to change at an accelerating pace.
    Our health care system is both complex and flawed in 
substantial ways. In a sense, it does not serve the American 
public well, but that is what we have to work with, and we must 
manage well to make it as effective as it can be.
    The skills and competencies for doing this are demanding 
and fast-changing. Our system, which still is probably the best 
in the world, will work only if those who lead it have strong 
and contemporary management skills.
    The American people have much at stake here. This is why I 
am before you today. The Federal government and the private 
sector both have an enormous investment which requires 
assurance that the health care system operates efficiently. 
Health expenditures are a major component of the Federal 
budget, as you know, and comprise a substantial and growing 
share of our overall national disposable income.
    In the face of this huge component of the U.S. economy, it 
is not unreasonable to ask what the Federal government spends 
to improve the education and training of persons that manage 
the system.
    In the current fiscal year budget, the government has made 
available approximately $1,230,000 under Title VII of the 
Public Health Services Act for health administration, 
traineeships, and special projects. That amount represents 
about 1/1000 of the cost of health care in this country spent 
to train people for management and leadership in health care.
    Let me not be misunderstood, we are grateful for the 
funding that we have. But in the interests of efficiency and 
cost-effectiveness, it is time to do more.
    Mr. Dalston. For our part, we have initiated a massive 
private/public effort with the Robert Wood Johnson Foundation 
in a major partnership to reengineer health administration 
education and training in universities in mid-career and 
advanced career preparation. That is a subject for another 
point, another time.
    I would only note that in passing we are committed and 
passionate about bringing that about because we believe the 
American people have much at stake and we have to do a better 
job. For today, our focus with you is on health administration 
traineeships and special projects which go only to programs 
that recruit from rural and underserved areas. Our field faces 
major challenges in its workforce issues. I am sure you are 
familiar with that.
    Mr. Chairman, AUPHA supports the request of the Health 
Professions and Nursing Education Coalition for an increase in 
funding of nonGME, graduate medical education health 
professions programs, to $440,000,000 in fiscal year 2002. We 
believe it is long overdue and are confident that such an 
increase can be officially managed by our colleagues at HRSA.
    Within the context of that increase, AUPHA respectfully 
requests of the subcommittee that funding for health 
administration traineeships and special projects in the Bureau 
of Health Professions be set at a level of $2,500,000 for 
fiscal year 2002. This will enable more traineeships to be 
funded at more appropriate levels, will directly address the 
critical needs of rural and underserved areas and will provide 
a valuable resource in our diversity goal; that is, in having a 
workforce that more accurately reflects the diversity of the 
people served.
    Mr. Chairman, thank you again for the opportunity to 
testify before you today. AUPHA stands ready to assist the 
subcommittee in addressing this important issue. I will be 
pleased to answer any questions you may have.
    [The testimony follows:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
    Mr. Peterson. Tell me if I am wrong, but my short version 
of your message is that we are inadequately funding the 
management team that is needed to manage this complex health 
care system?
    Mr. Dalston. Yes, sir.
    Mr. Peterson. So while we concentrate on the providers of 
care, which we have shortages in, too, and certainly in the 
nursing and a lot of the other associated fields, but you are 
saying there is far too little emphasis--because it is, it is a 
very complicated system today. We are not prepared with the 
adequate people to manage it.
    Mr. Dalston. Yes, sir, that is exactly what I am saying; 
that the skills and competencies required to effectively manage 
these complex systems in our changing system require something 
very different from what we are doing now. All I am requesting 
today is additional funding to deal with the rural and 
underserved areas. You will hear from us again on the larger 
picture. We are already underway with the larger picture but, 
yes, that is exactly right.
    Mr. Peterson. I have a university that has been asking for 
funding for a few years, and are actually doing part of it on 
their own. It is one of the larger health care university 
systems. It is in Pennsylvania. But they are wanting to develop 
a very sophisticated computer system.
    Mr. Dalston. Yes.
    Mr. Peterson. That will bring all the data together that 
will help monitor care.
    Mr. Dalston. Yes.
    Mr. Peterson. Because today that information is really not 
available.
    Mr. Dalston. Yes, sir. The IOM study that we all know about 
in student medicine had a staggering and devastating effect 
upon us relative to our own ineffectiveness in providing 
adequate technology application to support a reduction in 
errors in medications and quality.
    Mr. Peterson. I personally would like to talk to you 
sometime. I find what you have to say very interesting.
    Mr. Dalston. Thank you. I look forward to it.
    Mr. Peterson. Mr. Jackson.
    Mr. Jackson. Nothing.
    Mr. Sherwood. Thank you.
    Mr. Regula [presiding]. Our next witness will be Donna 
Thompson, who will be introduced by our colleague, Mr. Jackson.
    Mr. Jackson. Mr. Chairman, I am very pleased to introduce 
to the subcommittee Donna Thompson, chief operating officer of 
Access Community Health Network in Chicago. As chief operating 
officer of Access, a position she has held since 1995, Donna 
Thompson is charged with managing the health care delivery 
system of the Midwest's largest network of community health 
centers.
    Ms. Thompson has not only brought considerable health care 
management experience to Access Community Health Care but she 
has brought her own expertise in delivering patient care.
    Trained as a nurse and subsequently earning her M.S. In 
nursing administration from DePaul University, Ms. Thompson 
knows firsthand the rewards and challenges of providing 
excellent health services. I am proud to report that Access is 
one of the largest community health centers in the United 
States to receive this accreditation and actually earned a 
score that put its quality of care in the top 10 percent of 
ambulatory care centers in the country.
    I am also proud that Ms. Thompson and her daughter, who is 
with us today, are residents of South Holland, Illinois, and 
constituents of the Second Congressional District. On behalf of 
the subcommittee, I welcome Donna Thompson.
    Mr. Chairman.
    Mr. Regula. Thank you and welcome.
                              ----------                              


                                           Tuesday, March 20, 2001.

                    ACCESS COMMUNITY HEALTH NETWORK


                                WITNESS

DONNA THOMPSON, CHIEF OPERATING OFFICER, ACCESS COMMUNITY HEALTH
    Ms. Thompson. Thank you very much. Thank you, Chairman, and 
Congressman Jackson for having us today. As Congressman Jackson 
said, Access Community Health Network is one of the largest 
community health centers in the Nation; specifically, in the 
Midwest. Our mission is to provide cost-effective, quality 
health care, regardless of the ability to pay.
    Like other federally qualified health centers, Access 
provides health care to individuals who often are not welcome 
in traditional health care settings. This year we celebrate our 
10th anniversary, and since 1991 we have experienced 
significant growth. Now we manage 21 clinics and provide health 
care to over 195,000 patient visits, or roughly 70,000 
unduplicated individuals annually.
    Our facilities are located in 17 of the poorest 
neighborhoods in the Chicagoland area and suburbs, and we serve 
individuals that are indigent, unemployed or the working poor, 
regardless of their ability to pay.
    In addition to providing treatment for illnesses and 
episodic conditions, we also emphasize a holistic way of 
providing care throughout an individual's lifetime.
    Our vision for the future of our patients is focused on 
responding to issues that affect our patients and the 
neighborhoods. We continually reassess and respond to the 
rapidly changing urban health care environment. It is for this 
mission that we are here to ask for the subcommittee's crucial 
support.
    Community health centers fill a critical void by providing 
care to approximately 11 million patients not served by other 
providers and for those who cannot afford primary health care. 
With the rising numbers of uninsured patients, Access, like 
many community centers throughout the United States, is 
receiving decreased patient-generated revenue. As a result, 
even though we have reengineered our services we still have to 
face challenges in providing cost-effective care.
    Again, as we are continuing to be squeezed financially, we 
are pleased to announce that Congress provided the consolidated 
health center program with a significant increase in funding 
last year. For fiscal year 2002, we strongly support the 
National Association of Community Health Centers' request for 
an additional $175,000,000 for America's community health 
centers.
    Also, addressing the needs of infants and their mothers 
continues to be a monumental problem and a priority for Access. 
We also support the National Healthy Start Association's 
request for $150,000,000 for the healthy start program. This 
funding is critical in reducing infant mortality, low birth 
weight and racial disparities in perinatal outcome. An 
initiative that Access is very excited about is our Centers for 
Disease Control and Prevention racial and ethnic approaches to 
community health, or the REACH 2010 campaign. We were awarded a 
competitive grant to reduce disparities in breast and cervical 
cancer for low-income African American and Hispanic women.
    To achieve this goal, we partnered with nine African 
American churches and two Latino church organizations to tap 
into the powerful motivations of faith to initiate a church-
based intervention. In personally witnessing this process, I 
would like to say that the energies and the synergies that the 
women have brought forth in providing this education within 
their churches has really brought about a lot of changes in the 
approach women have around breast and cervical cancer, and also 
making sure that they get in for early detection.
    Access has also developed an innovative program addressing 
some of the specific problems faced by the elderly in some of 
the poorest neighborhoods in Chicago. We are seeing an increase 
in the number of seniors who do not have access to health care. 
Primarily, their barriers have been crime, and often lack of 
transportation, as they are trying to seek out health care. 
Many of these seniors are isolated, and a lot of them are 
living in their own single homes, and because of the 
neighborhoods that they live in they don't easily tap into 
health care delivery systems. Often when they do, it is through 
ER or very episodic ways. And a lot of times when we see 
seniors, they are coming with bags full of medication, where 
they have gone from different physicians and having no 
continuity of care.
    This innovative program, which we are very excited about, 
really links seniors to primary care if they have not had that 
afforded to them. We provide transportation and a physician-led 
team that not only does screening but also gives them education 
and resources.
    Finally, I would like to say that I am encouraging the 
subcommittee to encourage the Administration on Aging to 
continue to support this senior outreach program.
    Finally, Access partners with the Anixter Center. This is a 
facility that has adults with disabilities to live and work 
successfully in their community. Access' partnership with the 
Anixter Center includes providing their clients primary, 
preventive, and specialty care on-site at the Anixter Center. 
We have found that providing health care in an environment that 
is familiar and accessible for the disabled dramatically 
reduces their unnecessary going to hospitalizations or 
emergency rooms.
    We ask that the subcommittee help support and expand 
Access' work at the Anixter Center.
    Mr. Chairman, Access looks forward to working with your 
subcommittee again this year. Thank you.
    [The testimony follows:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
    Mr. Regula. Thank you.
    Questions. Do you use volunteers?
    Ms. Thompson. Yes, sir.
    Mr. Regula. Do you have retired physicians that volunteer? 
Nurses? Professionals, in other words?
    Ms. Thompson. We have other professionals. Mostly people 
from our community are our volunteers, and we have found that 
that has been very successful. They understand the community 
and they are often able to identify and link people who would 
naturally not be able to access our health centers.
    Mr. Regula. Do you get funding from the local government at 
all?
    Ms. Thompson. Small amounts.
    Mr. Regula. Small amount. And you have probably foundations 
and personal/private giving also?
    Ms. Thompson. Small amounts, yes.
    Mr. Regula. So what is your fundamental source of 
financing?
    Ms. Thompson. Our fundamental is a lot of our patients who 
are indigent, there is a sliding fee and that, of course, puts 
us at a burden because, as we are seeing more and more, 
individuals come off of public assistance and now have to pay 
for health care----
    Mr. Regula. I understand.
    Ms. Thompson [continuing]. Their ability to do that has 
been impeded. They cannot usually cover the total cost that it 
would take for us to provide the care that we would want.
    Mr. Regula. Did I hear you had a connection with DePaul?
    Ms. Thompson. Yes. I am a graduate.
    Mr. Regula. They just got a huge, huge request; 
$125,000,000, I think, from one of their graduates. So your 
turn is next.
    Ms. Thompson. Yes, I hope.
    Mr. Regula. They said they are having a tough time figuring 
out how to use it.
    Ms. Thompson. We could show them some ways.
    Mr. Regula. I bet. Thank you for coming.
    Ms. Thompson. Thank you.
    Mr. Regula. Next is Dr. Tammy Bray, Associate Dean and 
Professor at Department of Human Nutrition and Food Management, 
Ohio State. The Buckeyes are here today.
    Ms. Bray. Yes.
    Mr. Regula. They are doing a better job here than they did 
on the basketball court.
    Ms. Bray. Oh, dear. I am not responsible for that.
                              ----------                              

                                           Tuesday, March 20, 2001.

               AMERICAN SOCIETY FOR NUTRITIONAL SCIENCES


                                WITNESS

DR. TAMMY BRAY, ASSOCIATE DEAN AND PROFESSOR, DEPARTMENT OF HUMAN 
    NUTRITION AND FOOD MANAGEMENT, OHIO STATE UNIVERSITY
    Ms. Bray. Good morning, Mr. Chairman and members of the 
committee. I am Tammy Bray, a member of the American Society 
for Nutritional Sciences and a professor of nutrition and 
associate dean for research at the Ohio State University in 
Columbus. Today, I appear before you as a representative of the 
Nutritional Sciences Society, in support of the research budget 
for the National Institutes of Health. First, I would like to 
thank members on both sides of the aisle who have recently 
supported a generous budget increase for the NIH. This is a 
significant Federal investment in health-related scientific 
research.
    Not just researchers but all citizens should be very 
grateful to this subcommittee for this continued support. We 
believe that the continued support of health-related research 
should be a primary goal as Americans face new challenges to 
maintaining health and a quality of life in this new century. 
We strongly endorse the goal of doubling the NIH budget over a 
5-year period. In this fourth year, we are almost there.
    Many of you and your colleagues in the House and in the 
Senate have publicly supported this goal.
    Many of you may wonder why do we need to do even more 
nutrition research? It seems like we already know a lot about 
nutrition today. All you have to do is to go to a health food 
store and look at aisles and aisles of nutritional supplements.
    Mr. Chairman, that is precisely the reason. We have the 
responsibility to conduct unbiased scientific research and 
provide consumers unbiased nutritional information based on 
solid scientific evidence. In terms of America's health, there 
is no room for recall. Recall is not an option.
    Four out of ten leading causes of death in the United 
States are diet-related diseases. These diseases account for 
approximately 65 percent of all deaths in this country. Most of 
these are chronic diseases appearing as we grow older. In 
addition, one-third of Americans are overweight, and childhood 
obesity is an increasing problem. We Americans are growing 
older and we are also getting fatter. It is abundantly clear 
that our job in nutritional research has just begun. We need 
modern nutritional scientists who interface nutrition with 
contemporary biology to solve complex problems. I call this new 
field bionutrition.
    For example, we now know the human genome, the ``book of 
life.'' Now we need to learn how nutrients affect the 
expression of both healthy and diseased genes.
    The bionutritionists are trained as integrative scientists. 
We can integrate scientific knowledge from the DNA in the cells 
to the whole body and beyond to populations, linking 
agriculture, food systems, and public health.
    Nutritional research, although multidisciplinary, has one 
goal: understanding the role of appropriate nutrition and 
enhancing the quality of life throughout the life cycle for all 
of us.
    [The testimony follows:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
    Mr. Regula. Thank you. Questions?
    How do you get the information out? You develop these good 
standards, and that is terrific, because I agree with you 
totally that nutrition is very important to diet. How do you 
get the public to be aware of this information, this body of 
information that you develop?
    Ms. Bray. Nutrition education.
    Mr. Regula. Where, in the schools?
    Ms. Bray. All the way from the elementary school.
    Mr. Regula. What do you think about schools putting soft 
drink machines out there for kids so they buy that instead of 
milk?
    Ms. Bray. I am against it.
    Mr. Regula. I would think so.
    Ms. Bray. Strongly.
    Mr. Regula. What other mediums do you do? Do you work with 
schools? I mean, the information is so valuable. Communicating 
it, it seems to me, seems to be the challenge?
    Ms. Bray. Yes. It is actually very hard in some ways. As a 
matter of fact, recently I met a gentleman who volunteered to 
take care of one of the alternative schools, actually put good, 
wholesome food, took all the pop machines and everything out of 
there, and he told me--of course, this is personal 
communication--he told me that that particular school, there is 
no dropout rate because there is no violence because the 
students start noticing that the environment has changed. They 
are not hungry in the morning. They don't drink pop because 
they are hungry or thirsty. They actually drink--they have the 
food actually available to them, good food, fruits and 
vegetables, available to them.
    It is more expensive but, sir, it is worth it.
    Mr. Regula. Well, I agree. Do you think the program is 
developed where your food is labeled as to how much fat and how 
much----
    Ms. Bray. Yes, we will have to teach people to read them.
    Mr. Regula. To read them, that is true. Well, thank you 
very much. You have a challenge in taking your good information 
and getting it to people.
    Ms. Bray. Yes. Thank you.
    Mr. Regula. One of our witnesses has a plane to make, so we 
are going to skip here a little bit and make sure she gets her 
airplane. That is Lois Ferguson, accompanied by Jasmine 
Ferguson, National Coalition for the Homeless.
    I talked to you earlier, didn't I, Jasmine? Do you have to 
catch the airplane, too, Jasmine?
    Miss Jasmine Ferguson. Yes.
    Mr. Regula. All right. We will be interested in what you 
have to say.
                              ----------                              

                                           Tuesday, March 20, 2001.

                  NATIONAL COALITION FOR THE HOMELESS


                                WITNESS

LOIS FERGUSON; ACCOMPANIED BY: JASMINE FERGUSON, DAUGHTER
    Ms. Ferguson. Chairman Regula and members of the 
subcommittee, my name is Lois Ferguson. My daughter Jasmine is 
with me this morning. I will be testifying on behalf of the 
National Coalition for the Homeless in support of the eight 
homeless programs of the U.S. Departments of Education, Labor 
and Health and Human Services. In a moment I will describe for 
you the crucial role that one of these programs currently plays 
in our lives.
    First, though, I want to tell you something about our 
experience with homelessness. My own situation highlights the 
full range of supports that millions of people like me who 
become homeless each year need to get back on our feet. Canton 
is my hometown. I graduated from the practical nurse program of 
the Canton City Schools System. I have worked for the past 15 
years as an LPN, including the past 8 years at the Pines 
Nursing Center. I am married and have two children, Aaron who 
is 18 and Jasmine who is 9.
    When my husband and I were together, we made decent money. 
Everything began to unravel last summer. My husband and I 
separated. At the same time, I began missing work due to 
illness. Eventually I had to take a leave of absence. It took 
all summer for my physician to diagnosis me with a very serious 
heart condition. This diagnosis couldn't have come at a worse 
time. I had just switched employers, one that had provided 
better health insurance, but the diagnosis occurred when I was 
between coverage and so I had no means to pay my huge health 
care expenses.
    With my husband gone and my physician having instructed me 
to stop working, I had no way to pay the rent for our 
apartment. We moved in with my sister. That arrangement lasted 
only a week and a half because she had to move as well. Then we 
were really in a jam. A friend assisted me in locating the YWCA 
of Canton Homeless Shelter where Jasmine and I have been 
staying since November. We live together in a single room. We 
have managed to hold onto our clothes and some personal 
belongings, but all of our furniture and housewares are long 
gone.
    The hardest part of being homeless is the waiting time to 
return to our own home. Jasmine and I desperately want 
stability and we just can't seem to get there. We have applied 
for subsidized housing in Canton. We understand that we have 
been approved but something is holding it up. We don't 
understand it at all.
    Jasmine has changed schools during this period, and that 
has been a big thing for her. She misses her old friends and 
teachers. I relocated Jasmine from a prior school to her 
current school, Washington Elementary, because it was close to 
my sister's apartment. I thought we were going to be living 
with my sister permanently, and it seemed to make sense that 
her school be close to home since I didn't have a car to 
transport her to her old school.
    We have been blessed. Jasmine has been able to remain in 
Washington Elementary throughout this ordeal. I don't know what 
we would do if she had to stay at the shelter all day. School 
gives her something to do and keeps her mind off of the stress 
in our lives right now. I dread if we are still homeless in the 
summer.
    Jasmine participates in an after-school enrichment program 
at the YWCA shelter which is operated by the Canton School 
District and is funded through the Federal Education for 
Homeless Children and Youth Program. The enrichment program is 
helping her a lot. Every day after school, the enrichment tutor 
assists Jasmine in completing her homework and enhancing 
whatever she is learning in class at that time.
    Jasmine's schoolteacher sends an assignment book with her 
each day that lets the tutor know what they are working on in 
class. I believe this program has helped Jasmine keep her 
grades up on as much as possible, and the one-on-one assistance 
keeps her focused. The homeless education program has also been 
extremely helpful in making sure that Jasmine has school 
supplies, which I just can't afford.
    The Education for Homeless Children Youth Program is one of 
the few Federal programs that Congress funds specifically for 
people experiencing homelessness. My written statement 
describes these programs and recommends funding levels for 
them. The need is great for all of these programs. For example, 
the Canton homeless education program is only able to provide 
services to 500 of the 1,500 identified homeless children. That 
means for every Jasmine who receives services, there are two 
Jasmines who do not. My family is definitely benefiting from 
the homeless education program, so I know that I can support 
the other ones, too.
    These are real programs for real people, people like me; 
people like me who need health care, people like my daughter 
who are entitled to the same free public education as children 
with homes; people like us who wish for a place to call home.
    Chairman Regula, please increase funding for these homeless 
programs to help my family and millions of others in our 
situation make these dreams a reality. I am happy to answer any 
questions you may have.
    [The testimony follows:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
    Mr. Regula. Questions?
    Mr. Sherwood. No.
    Mr. Regula. You are at the YW?
    Ms. Ferguson. Yes.
    Mr. Regula. In Canton?
    Ms. Ferguson. Yes.
    Mr. Regula. The school has a program that helps Jasmine; is 
that correct?
    Ms. Ferguson. The program is at the YWCA, but it is through 
the school system.
    Mr. Regula. Through the school. But the YW provides your 
place to stay?
    Ms. Ferguson. Yes.
    Mr. Regula. And your shelter. What about food?
    Ms. Ferguson. We buy our own food.
    Mr. Regula. You buy your own. You are getting some benefits 
through the welfare programs?
    Ms. Ferguson. Yes, I am. We are still waiting for our 
disability, my Social Security disability, to see whether it is 
approved or not. We have applied but we haven't gotten an 
answer yet.
    Mr. Regula. Okay. You were disabled in your employment, 
prior employment, is that correct?
    Ms. Ferguson. That is correct.
    Mr. Regula. Okay. Well, thank you for coming.
    Ms. Ferguson. Thank you.
    Mr. Regula. You can make your airplane all right.
    Is this your first airplane trip, Jasmine?
    Miss Jasmine Ferguson. Yes.
    Mr. Regula. You will have a lot to tell your friends back 
in school.
    Okay. Our next witness is Dr. Carole Anderson, Dean of the 
College of Nursing at Ohio State.
                              ----------                              


                                           Tuesday, March 20, 2001.

              AMERICAN ASSOCIATION OF COLLEGES OF NURSING


                                WITNESS

DR. CAROLE ANDERSON, DEAN OF THE COLLEGE OF NURSING, OHIO STATE 
    UNIVERSITY
    Ms. Anderson. Good morning, Mr. Chairman and members of the 
subcommittee. I would like to also remind you that the lady 
Buckeyes are still in the competition.
    I am Carole Anderson, dean of the College of Nursing at the 
Ohio State University in Columbus, and on behalf of the 
American Association of Colleges of Nursing, I want to thank 
you for this opportunity to bring to the subcommittee our 
requested funding priorities for nursing research and education 
programs.
    AACN represents over 550 baccalaureate and graduate nursing 
programs in senior colleges and universities across the United 
States.
    The entire country is in the midst of an emerging nursing 
shortage. I have been the dean at Ohio State for 15 years and a 
nurse for over 40 years, and throughout my career there have 
been cyclical nursing shortages but never one of this 
magnitude.
    Since 1995, AACN has noted that enrollments in 
baccalaureate nursing programs have declined by approximately 
17 percent. Increasingly, employers are reporting dramatic and 
crisis-level shortages of nurses. On Sundays, for example, 
hospitals are forced to close entire patient care units, 
ambulances are diverted to other overcrowded facilities, and 
surgeries are being canceled due to the lack of appropriately 
educated and skilled registered nurses. Nurse vacancy rates are 
noted in all practice settings, including long-term care, home 
care and public health.
    In addition, an aging workforce, with the average age of a 
registered nurse being 45, compounds the shortage. Although 
employers are seeking a more highly educated nursing workforce 
for today's system, only 41 percent of nurses have 
baccalaureate or higher degrees.
    The growing shortage and a decline in enrollments are 
accompanied by a lack of nursing faculty that will affect the 
ability of the nursing profession to meet the demand for 
skilled nurses. The majority of AACN members report great 
difficulty in filling budgeted faculty positions. At our 
college, I have had 5 to 7 vacant positions for the past 
several years. The small number of doctorally-prepared nurses 
and the lengthy completion time of a doctoral degree have 
limited the availability of nurses for faculty roles. Doctoral 
nursing students are more often part-time students and full-
time workers with families. Moving these part-time students to 
full-time would increase the production of availability 
faculty.
    AACN recognizes that strategies to meet the growing nursing 
shortage must encompass private and public sector initiatives 
at local, State and Federal levels. We ask the subcommittee to 
graciously consider these Federal funding requests and the 
effect an unresolved RN shortage of thismagnitude will have on 
the future of health care in America.
    Mr. Chairman, we thank you and respectfully request a 
fiscal year 2002 funding level of $144.37 million for the 
National Institute of Nursing Research.
    The subcommittee's ongoing investment in NINR is well 
justified as nursing research contributes extensively to 
wellness and health choices that prevent disease and 
disability.
    The NINR supports investigators who conduct a broad range 
of clinical research, developing and testing ways to improve 
patient care, treat disease, manage chronic conditions and 
address the physical and emotional concerns important to the 
diverse American public. NINR investigators provide research 
findings for the Nation's largest profession of health care 
providers. At this funding level, NINR will support significant 
new research on such things as health disparities and end-of-
life care. They are the lead institute on coordinating research 
on end-of-life care.
    In an effort to develop the pool of nurse faculty and 
researchers, NINR directs 8 percent of its budget to research 
training. That supports approximately 190 pre-doctoral and 70 
post-doctoral researchers. AACN's 2000 survey claims 3,338 
nurses enrolled in doctoral programs that indicate that NINR 
supports less than 6 percent of these.
    Mr. Chairman, we are also here today to ask for increased 
funding for the Nurse Education Act, and additional funding for 
the nursing student loan programs. The Nurse Education Act, or 
Title 8 of the Public Health Service Act, is the major Federal 
statute providing authority for the Department of Health and 
Human Services to fund initiatives to expand or improve nursing 
education.
    This act is focused on three areas: advanced nursing 
education that provides funding for programs for nurse 
practitioners, midwives, nurse anesthetists and so on; nursing 
workforce diversity grants, which increase the opportunities 
for disadvantaged students, including underrepresented 
minorities that provide scholarship stipends, pre-entry 
preparation and retention programs; and the basic nurse 
education and practice grants to strength entry-level nursing 
education and practice.
    The priority areas are expanding baccalaureate enrollments, 
training for care of underserved and so on. We recommend an 
increase to $113 million, with $10 million directed to the loan 
programs.
    The loan programs are essential for helping the enrollment 
problems. At Ohio State, over half of our students work 10 to 
30 hours a week, and some 40, throughout their program. It is 
essential that these loan programs be increased.
    Mr. Regula. Why do you think there are fewer candidates for 
nursing?
    Ms. Anderson. There are few candidates--it is a variety of 
reasons. We are still predominantly a female position and the 
opportunities for young women have increased dramatically 
since, for example, the time when I went to nursing school. I 
think that is part of it.
    The other part of it is some of the--some salary problems. 
The average compensation has been pretty flat since about 1992. 
So there are a lot of different reasons. The job is tough.
    Mr. Regula. Yes, I believe it is.
    Ms. Anderson. It is a tough job.
    Mr. Regula. Well, thank you very much for coming.
    [The testimony follows:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
    Mr. Regula. Next is Dr. Terrance Cooper, Professor of the 
Department of Microbiology and Immunology, University of 
Tennessee. Do you know my friend the Governor down there, Don 
Sundquist.
    Mr. Cooper. I know of him. I haven't met him personally.
    Mr. Regula. Okay. We will look forward to hearing from you.
                              ----------                              


                                           Tuesday, March 20, 2001.

                ASSOCIATION OF AMERICAN MEDICAL COLLEGES


                                WITNESS

DR. TERRANCE COOPER, PROFESSOR, DEPARTMENT OF MICROBIOLOGY AND 
    IMMUNOLOGY, UNIVERSITY OF TENNESSEE, HEALTH SCIENCE CENTER, COLLEGE 
    OF MEDICINE
    Mr. Cooper. Good afternoon. I am Dr. Terrance Cooper, Chair 
of the AAMC Council of Academic Societies. My testimony will 
address five programs. Each one provides critical assistance to 
medical schools and teaching hospitals as they strive to 
fulfill their missions of education, research and patient care.
    Before beginning, however, as a scientist as well as an 
AAMC representative, I would like to thank the subcommittee for 
its continued bipartisan support of the NIH. If America is to 
sustain its lead in translating science into better health, its 
commitment to medical research must be maintained.
    The human genome is largely done, but that was the easy 
part. The more challenging task of employing the treasure trove 
in the service of mankind is just beginning. The AAMC supports 
the fiscal year 2002 recommendation of the Ad Hoc Group for 
Medical Research funding that advocates an increase of $3.4 
billion as the fourth installment towards the goal of doubling 
the NIH budget by fiscal year 2003.
    These additional funds will sustain and enhance peer-
reviewed, investigator-initiated basic research, and will 
provide opportunities for new investigators and for research in 
areas of biomedical science that historically have been 
underfunded.
    The AAMC also supports additional funding for continued 
expansion of clinical research and clinical research training 
opportunities, including the clinical research loan repayment 
program. Anecdotal evidence suggests the financial pressures of 
today pose a serious threat to the research capacity of 
America's medical schools and teaching hospitals, particularly 
for clinical research.
    Therefore, the AAMC supports increased funding for the 
NIH's National Center for Research Resources, which provides 
resources that are critical to maintain a productive and cost-
effective research environment.
    For example, the general clinical research centers program 
funds 79 university center-based hospitals throughout the 
country. These centers offer centralized and highly specialized 
facilities for patient-centered research. Their goal is to 
understand our most widespread and challenging diseases and to 
discover better ways to treat and cure them.
    Another example is the NCRR shared instrument grant 
program. It helps institutions and investigators to acquire the 
sophisticated instrumentation that a single researcher just 
can't afford. These grants maximize the return on Federal 
research funds by allowing multiple scientists with similar 
instrumentation needs to share such equipment. This approach 
also yields the additional benefit of promoting scientific 
collaboration across discipline boundaries.
    The AAMC asks the subcommittee for funding for the health 
professions education and training programs in fiscal year 
2001. The AAMC joins the Health Professions and Nursing 
Education Coalition to support a fiscal year 2002 appropriation 
of at least $440,000,000 for health profession programs that 
improve the quality, geographic distribution, and ethnic 
diversity of the health care workforce, particularly in the 
underserved areas.
    The AAMC is disappointed with the President's proposal to 
reduce the funding for these programs that provide an essential 
and stable infrastructure for the training and education of 
health professionals.
    For example, Title 7 provides grants for area health 
education training centers, which provide clinical training 
opportunities for medical students and residents in 
predominately rural settings and border regions by extending 
the resources of academic health centers to these communities.
    Complementing the medical research support by NIH, the 
Agency of Health Care Research and Quality sponsors health 
research services designed to improve the quality of health 
care, decrease health care costs and provide access to 
essential health care services by translating research into 
measurable improvements in the health care system.
    The AAMC supports the Friends of AHRQ recommendation that 
calls for a fiscal year 2002 funding level of $400,000,000 for 
AHRQ.
    As the Nation's lead agency in prevention, the Centers for 
Disease Control and Prevention is responsible for promoting 
health and quality of life by preventing and controlling 
disease, injury, and disability.
    The Association supports the recommendation of the CDC 
coalition that calls for a fiscal year 2002 appropriation of at 
least $5,000,000,000 to sustain the network of successful 
programs in illness and injury prevention and health promotion.
    The primary mission of the National Health Corps is to help 
underserved communities to develop, recruit and retain 
community responsive, culturally competent, primary care 
physicians dedicated to practicing in health professional 
shortage areas.
    The AAMC supports the NHSC appropriation of at least 
$169,000,000 for additional scholarships and loan repayment 
contracts that allow increased access to health in underserved 
areas, by developing new delivery sites and a large number of 
clinicians to provide care.
    In conclusion, we appreciate the continued support the 
subcommittee has given these programs and look forward to 
working with the subcommittee members to sustain these worthy 
initiatives which benefit all Americans.
    Thank you very much.
    [The testimony follows:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
    Mr. Regula. Thank you.
    Our next witness is Dr. Stephen Wilson, President, 
Association of Schools of Allied Health Professions.
                              ----------                              

                                           Tuesday, March 13, 2001.

                ASSOCIATION OF SCHOOLS OF ALLIED HEALTH


                                WITNESS

DR. STEPHEN L. WILSON, PRESIDENT, ASSOCIATION OF SCHOOLS OF ALLIED 
    HEALTH PROFESSIONS
    Mr. Wilson. Good morning, Mr. Chairman and members of the 
subcommittee. I am Stephen L. Wilson. I am Director of the 
School of Allied Medical Professions at the Ohio State 
University, another Ohio State university. But, I am also the 
President of the Association of Schools of Allied Health 
Professions, a not-for-profit organization representing 108 
higher educational institutions and hundreds of individual 
members who primarily are deans, other administrators and 
faculty of allied health units at 4-year colleges. I am 
testifying on behalf of that organization today.
    Among the more than 100 professional groups that are 
included as allied health are physical therapists, occupational 
therapists, clinical laboratory technologists, speech 
pathologists and audiologists, and respiratory care therapists. 
While some of us practice independently, we are generally 
engaged as members of the health care team with our medicine 
and nursing colleagues.
    Our association believes that the Federal Government has a 
central role to play in assuring that the Nation has an 
adequate supply of competently prepared faculty and 
practitioners in the allied health professions. This role 
should encompass attracting students, especially those from 
minority and underserved population, or portions of the 
population, and ensuring that there is an adequate supply of 
faculty to educate them.
    A number of significant shortages currently exist in our 
professions, as in nursing, and perhaps in medicine and the 
other professions. Virtually all of the allied health 
professions are experiencing a significant decline in 
enrollments and interest in the programs around the country, 
but we are also experiencing shortages now within the 
workforce.
    On behalf of my allied health colleagues around the Nation, 
I would like to express our enormous appreciation for the 
Federal funds that have been awarded over the years for the 
section 755 allied health grants and other disciplines program 
under Title 7 of the Public Health Service Act. This funding 
has made possible a wide variety of important endeavors for the 
allied health professions. Unfortunately, of the 962 
applications received by the U.S. Public Health Service during 
the last decade, funds have been available to support only 11 
percent of these proposals. The appropriation for the current 
year is about $8.4 million, of which $6.3 million is 
apportioned for allied health. The remainder goes to the 
chiropractic and podiatric medicine areas.
    Mr. Chairman, let me briefly outline some of the things we 
have accomplished with my allied health colleagues, using a 
relatively small amount of money, to offer some justification 
for our request to increase the overall amount to $21,000,000 
in fiscal year 2002.
    First of all, grants have been awarded to academic 
institutions, hospital-based education programs and consortia 
involving 47 different allied health disciplines in 32 States 
and the District of Columbia, with 14 percent of these awards 
going to historically black colleges and universities. Student 
recruitment and retention activities have affected over 9,000 
individuals, with 95 percent of these students being either 
minority or disadvantaged.
    More than 6,900 practitioners and 7,500 patients have been 
involved in geriatric assessment and rehabilitation activities. 
Sixty-six percent of these grant programs have entailed 
developing curricula in areas such as geriatrics, and 48 
percent of the grants include interdisciplinary training 
involving 1,450 allied health students.
    Thirty-one grant programs involve distance learning, making 
it possible for rural students to complete their professional 
course work in their communities and be employed in rural 
settings. Approximately 48 percent of graduates practice either 
full-time or part-time in medically underserved or rural areas. 
This figure is expected to increase significantly because 92 
percent of the programs funded during the last fiscal year 
grant cycle included either community-based activities or used 
distance learning technologies.
    Mr. Chairman, I believe we can show that these funds have 
been used extremely well to achieve the goals and objectives of 
the section 55 program, and in fact we believe they have been 
exceeded. More importantly, activities under this program have 
made it possible to advance important goals established by 
Congress to increase the number of underrepresented minorities 
in health professions, enhance the quality of health care 
provided to the aged, and add to the number of practitioners 
who provide service in rural areas.
    Mr. Chairman, I don't have a lot of time to talk about the 
National Commission on Allied Health. It is a document that we 
completed as a result of a mandate from Congress. But out of 
that, we have a number of different mandates that we believe we 
can use and justify in terms of future funding for the allied 
health professions.
    Currently, allied health's only designated source of 
Federal funding under Title 7 is a section 55 grants program. I 
would like to say that we would like to continue with the 
recommendation that we would have $21,000,000 in the fund this 
next year but also that under Titles 7 and 8, I would like our 
record to show that our association is aware of the critical 
role that all of these programs play in approving the health 
status of the citizens of our Nation. More than 45 
organizations belonging to the Health Professions and Nursing 
Education Coalition advocate $440,000,000 for Titles 7 and 8. 
We also concur with that. Thank you, sir.

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]



                                           Tuesday, March 20, 2001.

                   AMERICAN ACADEMY OF OPHTHALMOLOGY


                                WITNESS

GEORGE W. BLANKENSHIP, PRESIDENT, AMERICAN ACADEMY OF OPHTHALMOLOGY
    Mr. Regula. Thank you.
    Our next witness is Dr. George Blankenship, President of 
the American Academy of Ophthalmology.
    Dr. Blankenship, welcome.
    Dr. Blankenship. Good afternoon, Chairman Regula. I am not 
from Ohio, but I do practice ophthalmology in central 
Pennsylvania. Coincidentally, I was the medical director for 
the Hershey Medical Center when it was part of the Penn State 
Geisinger Health System, and an associate of Dr. Art Sherwood, 
Congressman Sherwood's much, much older brother.
    Mr. Sherwood. Thank you.
    Dr. Blankenship. You are welcome.
    This afternoon I am here as the president of the American 
Academy of Ophthalmology. We are the world's largest scientific 
and educational nonprofit organization. We have 27,000 eye MD 
surgeon and physician members, including 95 percent of the 
ophthalmologists in the United States.
    I am really here advocating for support of the National Eye 
Institute budget. Our mission depends upon continued laboratory 
research sponsored by the National Eye Institute. I want to 
thank you and the panel and your former colleagues for the 
commitment to double the National Institute of Health's budget 
over 5 years. The American Academy of Ophthalmology is also 
pleased with the National Eye Institute's budget support during 
this time. However, it is important to remember that the 
National Eye Institute's budget is not being doubled. As a 
matter of fact, since 1985, during the time when the National 
Institutes of Health has grown substantially, growth within 
funding for the National Eye Institute has been about half of 
what it has been for the other organizations within the NIH.
    Mr. Regula. NIH in their allocation, or is it limited by 
this committee?
    Dr. Blankenship. I think it is a combination of both, sir.
    The eye is small, but its impact on the quality of life is 
great. Americans fear blindness more than any other 
debilitating condition other than cancer. With the baby-boomer 
generation coming down the pike, we are in for a major problem 
that will impact the quality of life of all Americans unless we 
can solve some of the continuing problems we have with eye 
diseases.
    I am asking the subcommittee to fund the National Eye 
Institute at the professional judgment request level of 
$620,000,000 for fiscal year 2002. This would be the amount of 
money necessary to put the National Eye Institute budget on the 
same track as the rest of the National Eye Institute and to be 
doubled during this period of 5 years. With previous 
congressional support, the National Eye Institute budget has 
been able to advance the knowledge of eye and visual problems 
substantially. It has been money very wisely spent.
    Macular degeneration continues to be a huge problem for the 
United States. Approximately 10 percent of all people over the 
age of 65 have macular degeneration. If we don't find a 
solution for this, we are in for a real problem as the baby-
boomers enter that period of time of their life.
    Mr. Regula. It is an aging process of aging that causes it 
by and large?
    Dr. Blankenship. Absolutely. Most of the people with age-
related macular degeneration are 65 or older. The crisis is it 
essentially destroys their independence, and instead of having 
a bright future for their golden years, they lose that through 
loss of vision.
    There is research that suggests that cataracts, a condition 
which will probably affect all of us as we get older, or our 
family members at least, can also be reduced through medical 
treatment rather than the current treatment, which is only 
surgical.
    There are new treatments coming along for glaucoma, a 
condition which is especially damaging for the African American 
population. Just last Friday the FDA approved two new drugs 
that will enhance the ability to treat all people with 
glaucoma. One of those drugs, coincidentally, happens to be 
especially effective in people of greater pigmentation such as 
the African American.
    Diabetes continues to be the main cause of blindness for 
working-age Americans. Now, several years ago, the National Eye 
Institute supported a large clinical trial called the Diabetic 
Retinopathy Study, which found that laser treatment 
substantially reduced the risk of blindness for people with 
diabetes, but additional funding is needed for continuing 
research to find out how we can even eliminate this problem of 
diabetes.
    New treatments are available for the premature infant that 
develops retinopathy prematurely, a tragic condition where the 
struggling newborn premature infants go blind because of a 
complication that hopefully new treatments will solve.
    The National Eye Institute also supports research that can 
address unmet needs, such as the impact of eye disease and 
visual impairment on the public health, and improving the 
delivery of health care, and measuring clinical outcomes.
    In conclusion, Mr. Chairman, if the we take the opportunity 
to adequately fund vision and eye research, we can improve the 
quality of life for all and keep our Nation active and 
prosperous.
    Working today to prevent debilitating eye diseases will 
have huge economic and social benefits for America's future. 
The American Academy of Ophthalmology strongly recommendsyour 
support for recommending $620,000,000 for the National Eye Institute 
for the year 2002. Thank you for letting me join you this afternoon.
    Mr. Regula. Thank you for bringing this to our attention.
    [The testimony follows:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
                                           Tuesday, March 20, 2001.

     NATIONAL ASSOCIATION OF INDEPENDENT COLLEGES AND UNIVERSITIES


                                WITNESS

ADAM IRGANG, SENIOR, MOUNT UNION COLLEGE, ALLIANCE, OHIO
    Mr. Regula. Our next witness is Adam Irgang, a Senior at 
Mount Union College, and a football player, I understand. The 
Mid-Conference champions, right?
    Mr. Irgang. We are the Ohio Athletic Conference champions 
and Division III national champions.
    Mr. Regula. One defeat in about 2 years?
    Mr. Irgang. We, in my 4 years at Mount Union, I was 54 and 
1, and in the past 5 years we have been 66 and 1.
    Mr. Regula. Not a bad record. When I was there, it was 1 
and 66. I am not a football player.
    Mr. Irgang. In the decade, we have won five national 
championships, three out of the last four and four out of the 
last five. So we have been pretty successful.
    Mr. Regula. Quite a record.
    Mr. Irgang. Okay. Good afternoon, Chairman Regula and 
members of the subcommittee. It is an honor for me to testify 
in front of you this afternoon. My name is Adam Irgang, and I 
am a senior sport management major at Mount Union College in 
Alliance, Ohio. I have played football for 4 years there. I 
have been on many different student organizations, such as the 
student senate. I have been in a fraternity. I have held 
executive positions of my fraternity, and I am the----
    Mr. Regula. Which fraternity?
    Mr. Irgang. Phi Kappa Tau--and on the Interfraternity 
Council. I have been a freshman orientation guide as well as a 
member of the Support Management Association.
    I am testifying today on behalf of the National Association 
for Independent Colleges and Universities, NAICU. NAICU serves 
as a unified national voice of independent higher education. 
With nearly 1,000 member institutions and associations, NAICU 
reflects the diversity of private, nonprofit colleges and 
universities in the United States.
    These institutions vary significantly in size, structure, 
mission, location and cost. They include liberal arts colleges, 
faith-related institutions, historically black colleges, 
women's colleges, research universities and professional 
schools.
    Before I tell you my story, I would like to thank you for 
your support of the need-based student aid programs. Without 
the Federal student aid, I wouldn't have been able to attend 
Mount Union College and soon graduate from there.
    In high school I got decent grades, but I was mostly there 
to play sports. I lived with my father and my stepmother in an 
average middle-class family. My father was a marine in the 
1970s and never went to college. He had always wanted me to go 
into the military as well. He, in fact, surprised me with 
Sergeant Burton at my house one evening after wrestling 
practice, but I got the opportunity to play football in college 
instead.
    When it was time for me to choose which college I would go 
to, I decided that it was very important for me to go to a 
small private school where I could get the attention and the 
closeness that a small college can offer that a larger 
institution wouldn't be able to because of the number of 
students. Mount Union fit my needs, but my family was not sure 
how we were going to pay for this.
    The family contribution that we were expected to pay at 
Mount Union was on the high side for us. My father worked as a 
computer consultant for Cap Gemini America, and my stepmother 
did not work. She had to stay home with my much younger brother 
and sister, half-brother and sister.
    My family and my financial situation has changed throughout 
my college years, so it has been kind of tough for me. My 
freshman year I received no athletic scholarships because of 
Division III policy and no academic scholarships. I also 
received no Pell grant.
    I did receive full work-study, full Perkins loans and full 
Stafford loans. My father struggled to make the payments every 
month, and I worked as much as I could in work-study just to 
keep up with my own living expenses so that my father wouldn't 
have to send me money every month.
    My sophomore year, due to a falling out with my stepmother, 
I moved to Pennsylvania to live with my real mother and my two 
sisters. My older sister was attending the University of 
Pennsylvania, and she would soon be a junior. My younger sister 
was a junior in high school, and I was coming into my sophomore 
year at Mount Union. My mother didn't make nearly as much as my 
dad did, so my sophomore year, in addition to the other 
financial aid I received with the loans and the work-study, I 
received a Pell grant.
    Without the Pell grant and the work-study and the two 
loans, I would never have been able to go back to Mount Union 
College at all. My sister would have had to leave Penn, and my 
mother, who was attending the University of Pittsburgh to 
receive her bachelor of arts in business, would not have been 
able to finish her degree. So my sophomore year went pretty 
smoothly because of the financial aid I had.
    My junior year was a little different because my younger 
sister had started college at Robert Morris University. So at 
this time, while going to school herself, my mother was paying 
for her three children to attend pretty expensive colleges in 
the country. My father tried to help as much as he could, but 
he wasn't able to help my mother with the tuition as much as we 
needed it.
    My senior year has been the most difficult. In November 
this past year, my mom had passed away from cancer, and that 
was pretty much the end of all financial stability that I had. 
So without the support of Mount Union College and the 
assistance of all the Federal aid that I had, I wouldn't be 
here speaking to you right now and about to graduate from 
college.
    It was necessary for me to get the student aid to complete 
my degree, and it has allowed me many opportunities to arise 
for me, like this one today. I have had a chance to meet so 
many people and get involved in so many different 
organizations. In addition, I have also won three Division III 
national football championships, and I actually have a chance 
to fulfill a dream by working with the Redskins. I have an 
interview with them in April to work in ticket sales.
    I know you can only invest so much in all of the important 
programs that you have, that you are hearing today, so I urge 
you to consider the investment; that it gives back high 
returns, a college education.
    Thank you again for the opportunity to be here today to 
tell my story, to invest in my future. Thank you.
    Mr. Regula. Thank you.
    [The testimony follows:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
    Mr. Regula. The Phi Taus have a house now?
    Mr. Irgang. Yes, we do. We did get a new house. It is 
across the street from where the old one used to be. It used to 
be on campus, and now it is off campus again.
    Mr. Regula. My son was a Phi Tau at Mount.
    Mr. Irgang. Oh, really?
    Mr. Regula. I was an SAE.
    Mr. Irgang. They are right next door now.
    Mr. Regula. That is not right.
    Thank you for coming.
                              ----------                              

                                           Tuesday, March 20, 2001.

                   THE CENTER FOR VICTIMS OF TORTURE


                               WITNESSES

JOHN P. SALZBERG, WASHINGTON REPRESENTATIVE, THE CENTER FOR VICTIMS OF 
    TORTURE, ACCOMPANIED BY JUDY OKAWA, DIRECTOR OF TREATMENT PROGRAMS 
    FOR TORTURE AND SEVERE TRAUMA, FALLS CHURCH, VIRGINIA
    Mr. Regula. Our next witness is Dr. John Salzberg, 
representative of the Center for Victims of Torture.
    Mr. Salzberg. Thank you. I am also joined by Dr. Judy 
Okawa, Director of treatment programs for torture and severe 
trauma in Falls Church, Virginia.
    Mr. Regula. Are these children, do you say?
    Mr. Salzberg. It is the program for tortured victims.
    Mr. Regula. All ages?
    Ms. Okawa. We see all ages, yes, sir.
    Mr. Salzberg. These are victims of foreign governmental 
torture.
    Mr. Regula. Oh, okay.
    Mr. Salzberg. I represent the Center for Victims of 
Torture, which is based in Minneapolis, Minnesota, Martin 
Sabo's district. I also represent the National Consortium of 
Torture Treatment Programs. This is a consortium of 23 
treatment programs in 15 States from New York to California, 
Minnesota to Texas.
    In 1998, Congress adopted with broad bipartisan support the 
Torture Victims Relief Act. This act authorizes support for 
victims of torture by the Department of Health and Human 
Services. In 1999, Congress made its first appropriation, 
providing $7,200,000 for fiscal year 2000 to support treatment 
programs for victims of torture through the Office of Refugee 
Resettlement. Congress appropriated $10,000,000 for fiscal year 
2001.
    This subcommittee had the foresight and the leadership to 
provide these appropriations, for which we are most grateful.
    In fiscal year 2000, the Office of Refugee Resettlement 
provided grants to 15 treatment programs to strengthen their 
work.
    What has been the impact of these grants? These grants are 
increasing the capacity of treatment programs to provide 
services to survivors of politically-motivated torture, and 
their families, thus increasing significantly the number of 
clients served.
    These grants are enabling treatment centers to strengthen 
weakened infrastructures, enhance their management 
capabilities, their nongovernmental funding and their 
independent financial sustainability.
    These grants are giving hope to a determined movement of 
people from across the country to develop new treatment 
programs in regions of the United States currently without such 
programs.
    Finally, these grants are enabling torture victims to 
become productive and contributing members of their 
communities. It is important to note that many torture victims 
were leaders in their own countries. This is the reason they 
were singled out for torture.
    In terms of clients and former clients at our center in 
Minneapolis, many have become productive members of their 
communities, with some entering the professions and other 
leadership positions. Our clients have become dentists, 
architects, nurses, physicians, computer technicians, teachers, 
bank tellers and managers, nursing assistants, bookkeepers, 
youth counselors, and the list goes on and on. Thus providing 
treatment not only helps the individual, but also the community 
as a whole.
    While much has been accomplished, we believe that much more 
can be done to benefit victims as well as our communities. 
Given the considerable impact of existing grants and the real 
potential for extending this impact, we recommend that Congress 
appropriate $20,000,000 for fiscal year 2002. Also, we 
recommend that the appropriation include a provision for the 
Office of Refugee Resettlement to hire an additional staff 
member to administer the program.
    Finally, I would like to mention the Refugee Council USA. 
This is a coalition of 18 refugee resettlement organizations 
and other centers of which the Center for Victims of Torture is 
a member. At its March 15th meeting, the council endorsed for 
the Office of Refugee Resettlement $20,000,000 for the torture 
victims program, $10,000,000 for services for victims of 
trafficking, and at least $500,000,000 for the refugee 
resettlement services. The additional refugee funding is needed 
to support the increased number of refugees, the increased 
usage of a matching grant program, and the new eligibility of 
asylees for refugee services. Each of these three key areas of 
the Office of Refugee Resettlement, torture victims, 
trafficking and refugees, should receive a separate line item. 
That is our recommendation.
    Now I would like to turn the microphone over to Dr. Okawa.
    Ms. Okawa. Good morning, Chairman Regula and members of the 
committee. I would like to speak to you today about the 
powerful impact that the Torture Victims Relief Act has had on 
the survivors of torture in the Washington area through our 
ability to address their needs.
    To do this, I would like to give you the example of Mrs. 
H., who is a 30-year-old Ethiopian woman who was tortured in a 
number of brutal ways that have been commonly reported by a 
number of our clients. She was beaten so badly that she lost 
the hearing in one ear. She was brutally gang-raped countless 
times. Her head was flushed in the toilet repeatedly. She was 
forced to witness people be tortured as they hung upside down 
from ceiling fans and were beaten as they swung around. And she 
saw a pregnant woman be eviscerated and the fetus decapitated.
    Mrs. H.'s trauma symptoms were absolutely overwhelming when 
she came to our center. She tried to stay awake all night 
because, just falling asleep, she would relive herrapes. The 
sound of a man's voice or even the sight of a baby threw her into 
flashbacks. She avoided drinking anything or urinating because she had 
developed a phobia about toilets, and always there was a stabbing pain 
in her ear and in her teeth from all of the beatings.
    Thanks to the Torture Victims Relief Act funding, which is 
administered through the Department of Health and Human 
Services, our program has been able to provide her a broad 
range of services necessary to help her on the road to 
recovery. Therapy and free psychiatric medication helped her to 
sleep for the first time. Through our partnership with Fairfax 
Hospital, she has received medical services, pro bono 
specialists to work with her ear pain, volunteers to help her 
learn English and the transportation system.
    There is still a long way to go for providing services. We 
receive twice as many referrals as we have the funding to 
provide this wide range of services. We get clients from 
Houston and from Maryland and from Delaware because there are 
no treatment centers there. There are only 15 cities in the 
U.S. who have torture treatment programs that we know of.
    So we pray you will see fit to increase the funding for 
Torture Victims Relief Act to $20,000,000 so that more people 
will be helped to recover from these heinous crimes against 
humanity.
    Finally, I would like to invite you personally to visit our 
center. We are directly across the bridge in Falls Church. 
Thank you.
    Mr. Regula. I thank both of you.
    [The testimony follows:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
    Mr. Regula. These are all people from offshore pretty much?
    Mr. Salzberg. From all continents; from Africa, Asia, Latin 
America.
    Mr. Regula. Yes, right. Hard to understand.
    Ms. Okawa. It is.
                              ----------                              


                                           Tuesday, March 20, 2001.

      FEDERATION OF THE AMERICAN SOCIETIES OF EXPERIMENTAL BIOLOGY


                                WITNESS

MARY J.C. HENDRIX, PRESIDENT, FEDERATION OF THE AMERICAN SOCIETIES OF 
    EXPERIMENTAL BIOLOGY
    Mr. Regula. Our next witness, Mary Hendrix, president of 
the Federation of the American Societies of Experimental 
Biology.
    Ms. Hendrix. Thank you, Mr. Chairman and Mr. Sherwood, for 
this great opportunity to testify today. Please allow me to 
begin by offering my congratulations to you, Mr. Chairman, for 
your new leadership role here on the Labor-HHS Subcommittee.
    I understand that you have referred to these hearings as 
your shakedown cruise, and as the daughter of a former career 
naval submariner, I know how important shakedown cruise----
    Mr. Regula. You know what a shakedown cruise is?
    Ms. Hendrix. Yes, sir, I do. I appreciate it.
    This afternoon it is my privilege to thank you on behalf of 
FASEB's 60,000 member scientists for the unprecedented support 
that this committee and Congress have given the National 
Institutes of Health. We at FASEB strongly support the goal of 
doubling the NIH budget over 5 years, and this goal has been 
reached by Congress over each of the past 3 years, and now 
President Bush has adopted it as well.
    Just last Friday, as I mentioned to you earlier, Speaker 
Hastert and some of your colleagues, Jim Leach and Greg Ganske, 
also endorsed this national goal publicly.
    Mr. Regula. They have to send us the money, though.
    Ms. Hendrix. Yes, sir, we are hoping for that.
    We are deeply grateful for this commitment, and I believe 
that history will remember this moment as the turning point in 
our fight against many dreaded diseases, such as diabetes, 
Alzheimer's, and cancer.
    I would like to tell you what this new NIH funding has 
meant in my own laboratory back in Iowa. I am a cancer 
researcher at the Holden Comprehensive Cancer Center, the 
University of Iowa, where I spend most of my time trying to 
understand how cancerous tumors form and how they grow and how 
we might devise new strategies to inhibit their growth in 
patients.
    The single most important result of additional funding in 
my laboratory is that I am now able to mentor three physician-
scientists who are assisting me in doing this research and then 
trying to apply our knowledge to treat patients in the cancer 
center.
    Until the NIH budget began to grow, these young oncologists 
would not have been able to work in my laboratory, and they 
wouldn't have had the opportunity to engage in this important 
translational research.
    The additional NIH funding has also allowed our 
understanding of the human genome from the laboratory to the 
bedside far more quickly than we dare could have hoped 18 
months ago. My physician-scientist colleagues and I have been 
looking at the genetic sequences of patients afflicted with 
cancer, and we are putting our full effort into using this 
genetic information to develop new and more sensitive 
diagnostic tests, as well as to discover new molecular targets 
on cancer cells that might help in the development of 
additional drugs.
    So this is a very exciting time for all of us in cancer 
research, and with your support and the support of the American 
people it is really making it possible.
    I would like to close by telling you about one of our 
recent patients. I will refer to her as Mrs. Smith. She had 
been diagnosed with aggressive ovarian carcinoma, and over 
time, as I moved between my laboratory and her bedside with my 
physician-scientist colleagues, she and I became very good 
friends.
    We isolated her cell lines from her tumors, did a genetic 
workup of them, and then tried several different therapies in 
an attempt to inhibit her aggressive cancer. In the process, 
Mrs. Smith became quite a student of our research activities. A 
few weeks ago, she caught my eye when I went to her bedside, 
and she perked up and she said, Mary, when I get well, I am 
going to walk over to your laboratory and see what you are 
doing with my cancer cells.
    Well, I am sorry to say that Mrs. Smith lost her battle 
with cancer and that she never had the opportunity to come over 
and walk over to the laboratory. The consolation, though, that 
I can offer her family, and to you, Mr. Chairman, and the 
subcommittee members, is that we still have the cell lines from 
her tumors, and that we learned many valuable lessons in 
treating her that can be adapted to other patients with her 
cancer. So with your continuing support and the investment of 
the American people in biomedical research, my physician 
colleagues and I will be able to ask questions and to do 
experiments that will one day lead to therapies and cures for 
ovarian cancer and other cancers as well. Now, Mrs. Smith could 
see that day coming, but sadly for her, time ran out.
    So I thank you again for this wonderful opportunity, and I 
would be pleased to answer any questions you may have. Thank 
you.
    [The testimony follows:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
    Mr. Regula. Questions?
    Mr. Sherwood. Thank you very much.
    Ms. Hendrix. Appreciate it.
    Mr. Regula. You take patients as part of your laboratory 
work there?
    Ms. Hendrix. Yes, sir. We actually focus on the tumors that 
are isolated from their many different cancers.
    Mr. Regula. But the patients, do they stay there?
    Ms. Hendrix. The patients stay at the cancer center, and 
then we are able to go from our laboratory to the cancer 
center, yes, sir.
    Mr. Regula. Okay. Well, thank you for coming.
    Ms. Hendrix. Thanks a lot.
                              ----------                              


                                           Tuesday, March 20, 2001.

                LYMPHOMA RESEARCH FOUNDATION OF AMERICA


                                WITNESS

JERRY CRUM, VOLUNTEER, LYMPHOMA RESEARCH FOUNDATION OF AMERICA
    Mr. Regula. Next is Jerry Crum, volunteer of Lymphoma 
Research Foundation of America.
    Mr. Crum. Thank you, Mr. Chairman and members of the 
subcommittee, for the opportunity to present testimony today.
    My name is Jerry Crum, and I am coming here from Carson 
City, Nevada, on behalf of the Lymphoma Research Foundation of 
America. The LRFA is a national, nonprofit organization 
dedicated to funding lymphoma-specific research and providing 
information, education and support to lymphoma patients and 
their families.
    Three years ago, after a routine physical, my doctor told 
me that he was concerned about my white blood cell count. It 
had been high for a while, and he feared that I might have a 
form of cancer called chronic lymphocitic leukemia. He calmed 
me by saying that people sometimes lived up to 10 years with 
CLL without treatment, and he referred me to an oncologist at 
Mayo Clinic. After several days of specialized testing at Mayo, 
I was given another diagnosis, mantle cell lymphoma. The 
oncologist, a very kind man, could not look at me when he told 
me there were no known effective treatments for this form of 
cancer, and I could have as little as 6 to 18 months to live.
    Stunned, my wife and I felt quite lost, and, like most 
people, we knew nothing about lymphoma. That evening we walked 
to a bookstore and we started to read, and we learned that 
lymphoma is a cancer of the lymphatic system, a part of our 
immune system, and that there are two main categories of 
lymphoma, Hodgkin's disease and non-Hodgkin's lymphoma. We 
learned that about 80 percent of people diagnosed with 
Hodgkin's disease with treatment survive at least 5 years.
    The story is far more complex for non-Hodgkin's lymphomas, 
the category I am in. Some non-Hodgkin's lymphomas are 
considered curable; some are not curable, but are treatable. 
With mine, we discovered that statistically whether you treat 
it or not, you live about the same amount of time.
    In the complexity that I have described lays our challenge. 
There are more than 34 subtypes of lymphoma malignancies that 
range from slow-growing or indolent to highly aggressive. 
Lymphoma strikes individuals of all ages, including children, 
women and all races. According to the American Cancer Society, 
the number of newly-diagnosed of lymphoid malignancies in 2001 
is estimated to be 89,600, with a 50 percent mortality rate.
    Non-Hodgkin's lymphoma is the second most rapidly rising 
cancer by rate of incidence within the U.S. Within these 
statistics, Mr. Chairman, is an urgent human cry for leadership 
and focus.
    Since receiving my diagnosis 3 years ago, I have been 
struck by the almost academic pace of lymphoma research. The 
scientists and researchers involved in developing diagnostic 
and treatment approaches have excellent skills. The Federal 
cancer budget has been increasing, but progress has been too 
slow, and there is a notable lack of urgency. To address this 
situation, Mr. Chairman, the foundation supports the campaign 
of doubling the budget of the NIH by the year 2003.
    NCI is in the process of completing a progress review 
group, or PRG, on lymphoma, leukemia and myeloma. The PRG 
report produced by this process is designed to create a 
national research agenda for lymphoma, but we believe that the 
recommendations alone will not bring the needed change rapidly 
enough. Therefore, we request that a budget plan accompany the 
report.
    In addition, because of the link between lymphoma, 
environmental, bacterial and viral factors, we request the 
National Institute on Environmental Health Sciences to report 
the current state of its research portfolio on lymphoma and 
hematologic cancers.
    Finally, for fiscal year 2002, we request the Centers for 
Disease Control expand its support in investigating the 
possible environmental causes of lymphoma and increase its data 
collection on lymphoma to provide accurate statistics on the 
disease.
    In closing, I do not believe that this situation for myself 
and the more than 600,000 people living with lymphoma has to be 
bleak. Exciting advancements in genetics, science and 
technology have created the potential to develop new diagnostic 
treatment approaches. I am the beneficiary of this progress. I 
am currently participating in a clinical trial at the National 
Cancer Institute that involves treatment with a vaccine made 
from my own cancer cells, but I am 1 of only 20 participants, 
and even if successful, this treatment will take many, many 
years to reach the thousands who need it.
    Lymphoma is the only cancer with an increasing mortality 
rate. No one knows what is causing this. I do not believe that 
we should consider this situation as something beyond our 
control and, therefore, tragic but acceptable.
    Ellen Glesby Cohen, LRA's founder, testified before this 
subcommittee in 1998. Tragically, she lost her battle with 
lymphoma last August, and those of us who knew her deeply miss 
her.
    To paraphrase a former colleague of yours in the other 
body, the impact of all cases of lymphoma is local. With your 
leadership, investment and periodic review of progress and 
results, it is LRA's hope that the survival rate of all of us 
battling lymphoma will improve.
    I would be glad to answer any questions you may have.
    Mr. Regula. Well, thank you.
    [The testimony follows:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
    Mr. Regula. When we were at NIH, we met a lady who had had 
this vaccine, using her own cells. At this point, at least, she 
was free, clear of cancer cells. She had had ovarian and lung. 
So there seems to be some potential in that program.
    Mr. Crum. Yes. I think I was probably at the Institute when 
you were there. I know there were some people coming through, 
the Secretary was coming through, and I heard some Members of 
Congress. I think that is terrific that you are going there and 
meeting people, and the vaccine approach does look very good. I 
am very hopeful.
    Mr. Regula. Well, thank you for coming.
    Mr. Crum. Thank you.
    Mr. Regula. I wish you well.
    Mr. Crum. Thank you so much.
                              ----------                              

                                           Tuesday, March 20, 2001.

             CITIZENS UNITED FOR RESEARCH IN EPILEPSY, INC.


                               WITNESSES

DEBBIE FLADER, DIRECTOR, CITIZENS UNITED FOR RESEARCH IN EPILEPSY, 
    INC., ACCOMPANIED BY KATHY DODD, VOLUNTEER, CITIZENS UNITED FOR 
    RESEARCH IN EPILEPSY, INC.
    Mr. Regula. The next witness is Debbie Flader, Director of 
Citizens United for Research in Epilepsy.
    I think your chart tells your story.
    Ms. Flader. Do I need to speak?
    Mr. Regula. Well, I can see from the bars that epilepsy is 
at the low end at the National Institutes. Is that what you are 
going to tell me?
    Ms. Flader. That is what I am going to tell you.
    Mr. Regula. Or tell us?
    Ms. Flader. Yes.
    Mr. Regula. And you want more?
    Ms. Flader. Yes, I want more. Ready?
    Mr. Regula. I would suspect that would be the message.
    Ms. Flader. Here I go.
    Ms. Hendrix. Has anybody come asking for less?
    Ms. Flader. My name is Debbie Flader, and I am from Hanover 
Park, Illinois. Thank you, Mr. Chairman and members of this 
committee, for giving us this opportunity today to share our 
stories.
    My daughter Noel is now 17 years old, and she has epilepsy. 
She has been having daily seizures for 9 years. The 
powerlessness that I feel as a parent is overwhelming. Every 
form of therapy has been tried. Every anticonvulsant has been 
used, and experimental treatments have failed. She has also had 
brain surgery, to no avail. She has had many concussions, head 
injuries and brain bleeds from her seizures, and she longs to 
do things that other kids do, but she can't because her safety 
is at risk.
    Each year, 161,000 new cases of epilepsy are diagnosed. 
Approximately 195,000 potentially life-threatening seizures 
occur every year, which result in 42,000 deaths per year. Of 
the nearly 3 million Americans with epilepsy, 900,000 have 
seizures that are not controlled by available therapies. The 
cost to the Nation is a staggering $12,500,000,000 in direct 
and indirect costs.
    As the chart beside me shows, more needs to be spent on 
research for epilepsy. I am pleased with the new commitment the 
President's budget provides for research. Epilepsy lags far 
behind in funding compared to other diseases and disorders. I 
hope this committee will increase levels of epilepsy research 
to help close this widening gap. My daughter's future depends 
on it.
    I would like to introduce another mom, Kathy Dodd, who will 
share her compelling story with you.
    Ms. Dodd. Thank you.
    Like Debbie, I, too, have a daughter who has epilepsy. In 
fact, I left my daughter's bedside in the hospital this morning 
to share her story with you.
    Yesterday, Stacy underwent surgery in hopes of helping her 
seizures. Stacy's story is all too typical of thedevastating 
impact that epilepsy has on many children today. That is why I am 
urging this committee to increase funding for NIH research towards 
direct--NIH research directed toward finding a cure for epilepsy.
    For the first 7 months of Stacy's life, she was the 
happiest and healthiest little girl. However, in February of 
1999, she had her first seizure, which lasted a full 45 
minutes.
    Mr. Regula. How old was she?
    Ms. Dodd. She was 7 months old. This picture, which 
everybody is looking at, she is about a year and a half. Her 
first seizure occurred when she was 7 months.
    Mr. Regula. Did she----
    Ms. Dodd. She was in the hospital in this picture getting 
an EEG done, and so she had electrodes on the outside of her 
head. So she is basically--her head is wrapped so that she 
won't pull them off.
    Mr. Regula. Right.
    Ms. Dodd. Her first seizure lasted a full 45 minutes. My 
husband and I rushed out of work to meet Stacy and the 
paramedics at the hospital. When we arrived, she was on a 
breathing machine fighting for her life.
    That day in February changed our lives forever. Since then 
Stacy has been on eight different medicines to control her 
seizures. She has been on Depakene. These are all recent 
medications. She has been on Dilantin.
    Mr. Regula. Does she take those concurrently?
    Ms. Dodd. She is taking these concurrently, individually. 
Now she is taking them two at a time. She takes today 15 
medications, and she is 2\1/2\ years old.
    Mr. Regula. Fifteen medications each day?
    Ms. Dodd. Each day, yes.
    I won't go through the rest, but there are eight different 
medications that Stacy has tried. None of these have helped 
her.
    Not only have the medications not worked, but the side 
effects of these medications are often as damaging as the 
seizures themselves. Dilantin made Stacy so drowsy and drunk, 
she would walk into walls. Depakene caused Stacy to be so 
overly sedated, and her development stagnated. Tegretol caused 
Stacy to jerk and blink like this uncontrollably, and 
oftentimes causing her to fall down.
    Some days her temperament is cheerful and loving; other 
days it is erratic and uncontrollable. She has had multiple 
tests, searching for an explanation, yet nothing has been 
conclusive.
    I am sorry. I thought you were going to ask me a question.
    Mr. Regula. No.
    Ms. Dodd. This picture, she was in the hospital for 14 days 
with an EEG, and she was in a bed. She couldn't move out of her 
bed, and those 14 days--after those 14 days, nothing was found. 
We have been to different specialists and traveled to different 
hospitals. Nothing has helped.
    Stacy can often go a few weeks without a seizure, but then 
all of a sudden will have a seizure that lasts 1 hour. Watching 
her body convulse is the most horrifying experience. Her lips 
become blue, her body shakes violently, and she is unable to 
respond. Afterwards, when it is finally over, her body is limp 
from exhaustion.
    The most difficult part about all of this for us has been 
that she can be perfectly fine one minute, and the next minute 
she is in an ambulance being rushed, fighting for her life. We 
live day to day, hour to hour and minute to minute. Planning 
ahead is simply impossible.
    In March of 2000, Stacy had a life-threatening seizure that 
lasted over 1 hour. Afterwards she stopped breathing. Doctors 
tried unsuccessfully to help her, and her blood pressure and 
her oxygen level were dangerously low. At one time, my husband 
and I counted 14 different doctors in the hospital at that 
time, yet no one knew what to do. Stacy almost died that night.
    Luckily, she did survive. Unfortunately, however, over 
42,000 people die annually from epilepsy.
    It is quite possible that Stacy suffered permanent damage 
from her seizures. Statistically any seizure that lasts over 30 
minutes will cause permanent brain damage, and Stacy has had 
dozens that have lasted over 30 minutes. We know, too, there 
are many, many children who have suffered permanent brain 
damage from epilepsy.
    In the past 2 years, Stacy has had over 100 seizures. She 
has been hospitalized over 25 times, and she has already spent 
70 days of her young life in the hospital.
    The paramedics in our neighborhood know her well, but they 
continue to ask the same question: Isn't there anything you can 
do for this poor little girl? As a mom, it is difficult to 
answer, no, there seems to be nothing.
    While Stacy's story might sound unique, the saddest thing 
is that it actually is not. Of the 2.5 million Americans with 
epilepsy, almost 2 million report limited or no relief.
    As difficult as these past 2 years have been on all of us, 
we keep going knowing and believing someday this can be behind 
us. We know there are solutions waiting to be discovered. 
Please help us help our children. Thank you.
    [The testimony follows:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
    Mr. Regula. How old is Stacy now?
    Ms. Dodd. She is 2\1/2\ years old now.
    Mr. Regula. What is the history; have they told you?
    Ms. Dodd. Hers is considered idiopathic, which means there 
is no known cause of her seizures.
    Mr. Regula. Is there hope that as she grows older they 
would lessen?
    Ms. Dodd. No. Without further advancement and research or 
some sort of drug that we maybe don't know about or that is to 
be discovered, then there is no tool out there today to 
actually help her.
    Mr. Regula. At the moment no known causes though?
    Ms. Dodd. No known causes. And, in fact, that is somewhat 
common in epilepsy. It is about 50 percent, especially in 
children, there is no known cause of epilepsy. Now, many of 
those people, there are sometimes solutions, but for many, many 
of them there are not.
    The known causes are things like brain tumors and things 
like that that can then be surgically removed. In Stacy's case, 
that is not--as well as in Debbie's daughter's case-- that is 
not the situation.
    Mr. Regula. Well, you are hoping that NIH will have a 
breakthrough in research?
    Ms. Dodd. Yes. We really believe a cure can be out there 
very soon. Our hope is in 5 to 10 years, there will be some 
medical research, and there will be a cure for Stacy. Otherwise 
she will require long-term care for the rest of her life.
    Mr. Regula. Well, we hope your hope is well-founded.
    Ms. Dodd. Well, thank you.
    Mr. Regula. Thank you for coming.
    Ms. Dodd. Thanks.
                              ----------                              

                                           Tuesday, March 20, 2001.

                        NEUROFIBROMATOSIS, INC.


                                WITNESS

KAREN PELUSO, EXECUTIVE DIRECTOR, NEUROFIBROMATOSIS, INC.
    Mr. Regula. Our next witness is Karen Peluso, Executive 
Director of Neurofibromatosis. Did I get that right?
    Ms. Peluso. You did say that right. Thank you.
    Mr. Regula. One last question to the young lady who was 
just here. Do you have other children?
    Ms. Dodd. Yes.
quit
Mr. Regula. They have no problem?
    Ms. Dodd. Right. I have a 5-year-old. Her only problem is 
dealing with a sick 2\1/2\ year-old sister. Besides Stacy's 
epilepsy, she is a very healthy kid. Both my two girls were 
healthy, and Stacy, there was no indication when I was pregnant 
with her or anything that there was anything wrong. There was 
no indication until one day out of the blue.
    Mr. Regula. And even checking her brain with the EEG, 
nothing?
    Ms. Dodd. With the EEG, right. She has typically a normal 
EEG.
    Mr. Regula. That is a strange thing, isn't it?
    Ms. Dodd. The other strange thing about Stacy is she has 
seizures every once in a while, and when we have her in the 
hospital to see the seizure, she does not have one, which is a 
very common thing.
    One thing we need is more research to help identify the 
cause of the seizures, and then potentially the right 
medication or things like that are out there to be discovered--
are out there. It is just finding it.
    Mr. Regula. I surely hope they do.
    Ms. Dodd. Thanks.
    Mr. Regula. Thank you.
    Yes. Go ahead.
    Ms. Peluso. I am very interested in her story as well, 
because I am here to talk to you about neurofibromatosis, and 
neurofibromatosis is also linked to epilepsy. Many of the 
patients who have NF experience epilepsy.
    Thank you, Mr. Chairman, for the opportunity to appear 
before you today to present testimony to the subcommittee in 
support of continued funding for neurofibromatosis research. I 
am Karen Peluso. I am the executive director of 
Neurofibromatosis, Incorporated, in Massachusetts.
    I am here on behalf of 100,000 Americans who have NF and 
the tens of millions who suffer from NF's related diseases.
    Mr. Regula. Now what are the characteristics of this 
disease? What are the symptoms?
    Ms. Peluso. Well, there is an outward sign that appears on 
the body, usually cafe au lait birthmarks, that usually if you 
have six or more of these coffee-colored birthmarks on the 
body, you should be screened for NF.
    But basically what neurofibromatosis means is, if you break 
the word down, neuro means nerves, fibroma meanstumors, and it 
is tumors of the nerves. Because we have nerves everywhere in and on 
our body, people who have NF can develop tumors anywhere in or on their 
body.
    Mr. Regula. Is it disabling?
    Ms. Peluso. Very often it is. It can go from being very 
mild to very severe. Unfortunately, if tumors are in the brain 
or in another inoperable area, the patient will usually die.
    Mr. Regula. Do some people just have it as a sort of a 
lifetime----
    Ms. Peluso. Yes, sir.
    Mr. Regula [continuing]. Condition?
    Ms. Peluso. You are born with it. It is something that you 
are born with. It is genetic. It can be passed from one 
parent--one parent will carry the gene and pass it along to the 
child. Each child has a 50 percent chance of inheriting the 
gene for NF.
    Sometimes NF occurs in families as a spontaneous mutation. 
It occurs where there is no history of NF, and then all of a 
sudden a child will be born with it, and then that child can 
pass it on to their offspring.
    Mr. Regula. Are there adults that have it now?
    Ms. Peluso. Oh, yes.
    Mr. Regula. Can they function in society or go to work, for 
example?
    Ms. Peluso. Well, some do. Some do.
    Have you ever heard of the ``Elephant Man's'' disease?
    Mr. Regula. I think so.
    Ms. Peluso. Well, for many years neurofibromatosis was 
incorrectly referred to as the ``Elephant Man's'' disease. 
Interestingly, over the past 10 years or so, they have learned 
that the ``Elephant Man'' had something even rarer, but for 
many years it was thought that this is what he had.
    That, of course, is the most extreme example of a person 
with this type of a disorder. Many people will have NF and not 
know that they have it, and then they will have a child that 
will be born severely affected, and then when they go to 
genetic screening, they will determine that perhaps one of the 
parents has passed it along.
    NF involves the uncontrolled growth of tumors along the 
nervous system, which can result in disfigurement, deafness, 
blindness, brain tumors, epilepsy, cancer and death. 
Approximately one-half of children with NF also have learning 
disabilities. It is the most common neurological disorder 
caused by a single gene. It is highly variable, as I said, and 
it is progressive. Usually, as people progress in age, they 
develop more tumors, and some of them are in critical places.
    While not all NF patients suffer from the most severe 
symptoms, they all live with the uncertainty of not knowing if 
and when they will be seriously affected.
    As the parent of a daughter with NF, I am full of hope and 
excitement because every day we are moving closer to treatments 
and a cure for this disease. My personal involvement with 
neurofibromatosis began 20 years ago when my little girl almost 
died due to the ravages of plexiform neurofibromas growing 
inside and outside of her body. Heroic surgical measures saved 
her life. In spite of learning disabilities, she has graduated 
from college, and with her own unique style she manages to 
disguise the tumors and scars which mar her body. She tries to 
live as normal a life as possible, and she is a productive 
member of our society. She is my inspiration.
    Twenty years ago, when I first heard the word 
neurofibromatosis, it was a little known and poorly understood 
disorder. As I said, it was known as the ``Elephant Man's'' 
disease, and that was very, very frightening to us. In fact, at 
the time a pediatrician showed us in his medical book, there 
was one paragraph about NF, and I was even lucky that he was 
able to properly diagnose NF.
    The progress that has been made since that time is 
remarkable. It has been determined that NF is closely linked to 
diseases such as cancer, brain tumors, heart disease, learning 
disabilities and epilepsy. Today, research on NF has become one 
of the great success stories in the current revolution in 
molecular genetics. Most of the progress to date has resulted 
from investments in basic research, which has led to the 
discovery of the genes for both NF type 1 and NF type 2 in the 
development of advanced animal models.
    Today when parents are told that their child has 
neurofibromatosis, they can more hopeful than I was 20 years 
ago because there is so much more awareness, and there is 
research going on, especially at the NIH. Surgery is still the 
only treatment for NF tumors.
    Mr. Regula. Do you remove them with surgery?
    Ms. Peluso. Yes, remove the tumors; that is, if they are 
operable. If they are in the brain or in the spine, very often 
to remove them would create more of a problem or kill the 
patient.
    So now we need to transfer the scientific discoveries from 
the lab to the clinic and develop drugs and related therapies. 
This translational research holds great promise for NF 
patients, as well as for patients who suffer from the many 
diseases which are linked to NF.
    Research is costly and will require an increased commitment 
on the Federal level. My organization and the families that I 
represent support the appropriation of $23,700,000,000 for the 
NIH in fiscal year 2002.
    I recognize that the progress we have made in a small 
period of time would not have been possible withoutCongress's 
continued support of the NIH, and I would like to personally thank the 
members of this subcommittee for their leadership. Thank you.
    Mr. Regula. Well, thank you.
    Ms. Peluso. Thank you very much.
    Mr. Regula. I hope they are successful.
    Ms. Peluso. Thank you.
    [The testimony follows:]

              [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]


    
    Mr. Regula. The committee is adjourned until tomorrow.





                           W I T N E S S E S

                              ----------                              
                                                                   Page
Agnew, Dr. Jacqueline............................................   868
Alpern, Dr. R.J..................................................   762
Anderson, Dr. Carole.............................................  1166
Anderson, K.M....................................................    19
Anderson, Terje..................................................  1054
Anderton, R.M....................................................   964
Aubrey, L.A......................................................   791
Bagby, Dr. Grover................................................    96
Barr, Richard....................................................   245
Berk, Dr. Paul...................................................   421
Blankenship, G.W.................................................  1195
Bray, Dr. Tammy..................................................  1142
Bridgman, Pat....................................................    84
Brooks, J.F......................................................   297
Brown, K.M.......................................................   771
Buckland, K.J....................................................   184
Bumpers, Hon. Dale...............................................   476
Burakoff, S.J....................................................   652
Carter, Darrel...................................................  1063
Caruso, Mary.....................................................   255
Cataldo, Dr. M.F.................................................  1029
Catena, Cornelio.................................................   413
Cerulli, Dr. M.A.................................................   172
Chaffin, Kimberly................................................   255
Cheek, J.W.......................................................   357
Coffey, Dr. Donald...............................................   812
Cohen, Peter.....................................................   528
Cooper, Dr. Terrance.............................................  1177
Cornwell, Dr. E.E., III..........................................    34
Cross, Terry.....................................................   913
Crum, Jerry......................................................  1234
Dabis, Cherien...................................................   580
Dalston, Dr. Jeptha..............................................  1122
Dillon, Carl.....................................................  1063
DePietro, Brayton................................................   519
DePietro, Steven.................................................   519
Dodd, Kathy......................................................  1244
Dorman, D.E......................................................   367
Downey, Morgan...................................................   923
Etking, Dr. Paul.................................................   801
Ferguson, James..................................................   266
Ferguson, Jasmine................................................  1153
Ferguson, Lois...................................................  1153
Fischbach, G.D...................................................   308
Flader, Debbie...................................................  1244
Fleming, Luceille................................................     1
Friedlaender, Dr. Gary...........................................   229
Furlong, Patricia................................................    74
Gaffney, Allison.................................................   229
Gibson, Dr. J.J..................................................   628
Gipp, D.M........................................................   338
Goldstein, Dr. Lawrence S.B......................................   197
Gollob, E.H......................................................   821
Gorham, Millicent................................................   486
Goyan, J.E.......................................................   601
Grove, J.H.......................................................   441
Hendrix, Mary J.C................................................  1220
Holbrook, P.R....................................................   540
Holomah, Linda...................................................   781
Holt, G.R........................................................   288
Hood, Dr. R.G....................................................   452
Horbach, Nicolette...............................................   683
Hughes, Cathy....................................................  1008
Irgang, Adam.....................................................  1203
Jenney, Jon......................................................   220
Jollivette, C.M..................................................   607
Jones, R.L.......................................................    63
Joyce, Michael...................................................   954
Kayne, Daniel....................................................   229
Knowlton, G.A....................................................   507
Kouris, Jean.....................................................  1074
Kouris, Nathan...................................................  1074
Kraut, Dr. A.G...................................................   509
Lecuona, Fernando ``Butch''......................................   558
Lennie, Dr. Peter................................................   619
Lewis, Roslie....................................................   528
Lowry, Alma......................................................  1085
Mastrangelo, R.M.................................................   791
Mauderly, Dr. J.L................................................   832
McCord, J.R......................................................   392
Miller, Cheryl...................................................   328
Modell, Vicki....................................................   209
Moses, Dr. Alan..................................................   899
Murrain, William.................................................    27
Nahm, Rick.......................................................   845
Ng, Dr. M.W......................................................  1102
Nixon, Dr. S.J...................................................   888
Norton, Nancy....................................................   172
Offenbacher, Steven..............................................   666
Okawa, Judy......................................................  1211
Peck, S.B........................................................   570
Peluso, Karen....................................................  1254
Philbin, Edwin...................................................   722
Plowe, C.V.......................................................   317
Ponder, Henry....................................................   979
Remillard, J.R...................................................   722
Rider, Dr. J.A...................................................   954
Rivers, Hon. L.N.................................................  1095
Robertson, Dr. R.M...............................................   589
Sales, Amos......................................................   348
Salzberg, J.P....................................................  1211
Saporito, Dr. Robert.............................................   856
Schroeder, Paul..................................................   255
Schure, Matthew..................................................   693
Sernau, S.W......................................................   677
Slater, Mitchell.................................................  1008
Smith, Mark......................................................   704
Smith, Nicole....................................................   704
Smokler, Dr. Irving..............................................  1096
Soma, Frank......................................................   495
Sontag, J.A......................................................   641
St. Pierre, Ronald...............................................   276
Stamm, Joseph....................................................   430
Stewart. Brad....................................................  1096
Taylor, S.D......................................................   751
Thiel, T.K.......................................................   730
Thompson, Donna..................................................  1131
Tilp, Meredith...................................................   379
Towers, Dr. Jan..................................................   943
Vallas, P.G......................................................   990
Vaughn, Kim......................................................   400
Vredenburgh, Judy................................................  1114
Watts, Mikal.....................................................   715
Webb, Veronica...................................................  1008
Willey, John.....................................................   932
Wilson, Dr. S.L..................................................  1188
Wootan, M.G......................................................    46
Zadnik, Dr. Karla................................................   879



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

                              ----------                         

                               Volume 7A

                                                                   Page
Access Community Health Network..................................  1131
American Academy of Nurse Practitioners..........................   943
American Academy of Ophthalmology................................  1195
American Academy of Pediatric Dentistry..........................  1102
American Academy of Orthopedic Surgeons..........................   229
American Academy of Otolaryngology--Head and Neck Surgery 
  Foundation, Inc................................................   288
American Association for Dental Research.........................   666
American Association of Colleges of Nursing......................  1166
American Association of Colleges of Osteopathic Medicine.........   693
American Association of Pharmaceutical Scientists................   601
American College of Surgeons.....................................    34
American Dental Association......................................   964
American Dental Hygienists' Association..........................   570
American Foundation for the Blind................................   255
American Heart Association.......................................   589
American Liver Foundation........................................   421
American Obesity Association.....................................   923
American Optometric Association..................................   879
American Psychological Society...................................   509
American Society of Nephrology...................................   762
American Society for Nutritional Sciences........................  1142
American Society for RSD-CRPS....................................    19
American Society of Tropical Medicine and Hygiene................   317
American Urogynecologic Society..................................   683
Amsterdam Memorial Health Care System............................   413
AO Fox Memorial Hospital.........................................   722
Association of American Medical Colleges.........................  1177
Association of Schools of Allied Health..........................  1188
Association of Schools of Public Health..........................   276
Association of University Programs in Health Administration......  1122
Association of University Programs in Occupational Health and 
  Safety.........................................................   868
Big Brothers Big Sisters of America..............................  1114
Center Point, Inc................................................   751
The Center for Victims of Torture................................  1211
Chicago Public Schools...........................................   990
Children's Brain Diseases........................................   954
Children's National Medical Center...............................   540
Childsight, Helen Keller Worldwide...............................   379
Citizens United for Research in Epilepsy, Inc....................  1244
Colonial Williamsburg Foundation.................................   845
Columbia University..............................................   308
Cooley's Anemia..................................................   495
Command Trust Network............................................   580
Concil of State and Territorial Epidemiologists..................   628
Crohn's and Colitis Foundation of America........................  1074
Cystic Fibrosis Foundation.......................................   297
Digestive Disease National Coalition.............................   172
Duchenne Muscular Dystrophy......................................   677
Dystonia Medical Research Foundation.............................   528
Federation of the American Societies of Experimental Biology.....  1220
Hepatitis Foundation International...............................   730
Immune Deficiency Foundation.....................................   245
Jacob's Cure.....................................................   641
Jeffrey Modell Foundation........................................   220
Joint Steering Committee for Public Policy.......................   197
Joslin Diabetes Center...........................................   899
Juvenile Diabetes Research Foundation............................   519
Kennedy Krieger Institute........................................  1029
Lifebeat, The Music Industry Fights AIDS.........................  1008
Lovelace Respiratory Research Institute..........................   832
Lymphoma Research Foundation of America..........................  1234
Maurice and Jane Sugar Law Center for Economic and Social Justice  1085
Metropolitan Family Services.....................................    63
National Alliance for Eye and Vision Research....................   821
National Alliance for Nutrition and Activity.....................    46
National Association for Equal Opportunity in Higher Education...   979
National Association of Independent Colleges and Universities....  1203
National Association of State Alcohol and Drug Abuse Directors, 
  Inc............................................................     1
National Association of State Workforce Agencies.................   558
National Black Nurses Association................................   483
National Coalition for Cancer Research...........................   812
National Coalition for the Homeless..............................  1153
National Coalition of STD Directors..............................   801
National Council on Independent Living...........................   184
National Council on Rehabilitation Education.....................   348
National Fuel Funds Network......................................   771
National Indian Child Welfare Association........................   913
National Indian Education Association............................   357
National Job Corps Association...................................  1063
National Kidney Foundation.......................................   781
National Labor Relations Board...................................   441
National Medical Association.....................................   452
National Organization for Rare Disorders.........................   367
National Organizations Responding to AIDS Coalition..............  1054
National Prostate Cancer Coalition...............................   932
Nephcure Foundation..............................................  1095
Neurofibromatosis, Inc...........................................  1254
New York County Health Services Review Organization..............   430
New York Medical Center..........................................   652
New York University..............................................   619
New York University Downtown Hospital............................   791
North Mississippi Medical Center.................................   392
Oakhurst Medical Centers.........................................    27
Ohio Council of Behavioral Healthcare Providers..................    84
Oregon Health Sciences University................................    96
Opportunity in Education.........................................   507
Paratuberculosis Awareness and Research Association..............   328
Parent Project for Muscular Dystrophy............................    74
Research Society on Alcoholism...................................   888
Research to Prevention...........................................   476
Sjorgren's Syndrome Foundation...................................   400
Society for Maternal-Fetal Medicine..............................   266
Sudden Infant Death Syndrome Alliance............................   704
United Tribes Technical College..................................   338
University of Miami..............................................   607
University of Medicine and Dentistry of New Jersey...............   856

                                
