[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.
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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.
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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.
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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:]
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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.
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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.
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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.
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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.
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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.
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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.
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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:]
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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:]
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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:]
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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:]
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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:]
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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.
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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.
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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.
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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:]
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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.
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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:]
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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:]
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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:]
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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
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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