<DOC>
[107th Congress House Hearings]
[From the U.S. Government Printing Office via GPO Access]
[DOCID: f:73732.wais]
ADVANCING THE HEALTH OF THE AMERICAN PEOPLE: ADDRESSING VARIOUS PUBLIC
HEALTH NEEDS
=======================================================================
HEARING
before the
SUBCOMMITTEE ON HEALTH
of the
COMMITTEE ON ENERGY AND COMMERCE
HOUSE OF REPRESENTATIVES
ONE HUNDRED SEVENTH CONGRESS
FIRST SESSION
__________
JUNE 27, 2001
__________
Serial No. 107-32
__________
Printed for the use of the Committee on Energy and Commerce
Available via the World Wide Web: http://www.access.gpo.gov/congress/
house
__________
U.S. GOVERNMENT PRINTING OFFICE
73-732 WASHINGTON : 2001
----------------------------------------------------------------------------
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COMMITTEE ON ENERGY AND COMMERCE
W.J. ``BILLY'' TAUZIN, Louisiana, Chairman
MICHAEL BILIRAKIS, Florida JOHN D. DINGELL, Michigan
JOE BARTON, Texas HENRY A. WAXMAN, California
FRED UPTON, Michigan EDWARD J. MARKEY, Massachusetts
CLIFF STEARNS, Florida RALPH M. HALL, Texas
PAUL E. GILLMOR, Ohio RICK BOUCHER, Virginia
JAMES C. GREENWOOD, Pennsylvania EDOLPHUS TOWNS, New York
CHRISTOPHER COX, California FRANK PALLONE, Jr., New Jersey
NATHAN DEAL, Georgia SHERROD BROWN, Ohio
STEVE LARGENT, Oklahoma BART GORDON, Tennessee
RICHARD BURR, North Carolina PETER DEUTSCH, Florida
ED WHITFIELD, Kentucky BOBBY L. RUSH, Illinois
GREG GANSKE, Iowa ANNA G. ESHOO, California
CHARLIE NORWOOD, Georgia BART STUPAK, Michigan
BARBARA CUBIN, Wyoming ELIOT L. ENGEL, New York
JOHN SHIMKUS, Illinois TOM SAWYER, Ohio
HEATHER WILSON, New Mexico ALBERT R. WYNN, Maryland
JOHN B. SHADEGG, Arizona GENE GREEN, Texas
CHARLES ``CHIP'' PICKERING, KAREN McCARTHY, Missouri
Mississippi TED STRICKLAND, Ohio
VITO FOSSELLA, New York DIANA DeGETTE, Colorado
ROY BLUNT, Missouri THOMAS M. BARRETT, Wisconsin
TOM DAVIS, Virginia BILL LUTHER, Minnesota
ED BRYANT, Tennessee LOIS CAPPS, California
ROBERT L. EHRLICH, Jr., Maryland MICHAEL F. DOYLE, Pennsylvania
STEVE BUYER, Indiana CHRISTOPHER JOHN, Louisiana
GEORGE RADANOVICH, California JANE HARMAN, California
CHARLES F. BASS, New Hampshire
JOSEPH R. PITTS, Pennsylvania
MARY BONO, California
GREG WALDEN, Oregon
LEE TERRY, Nebraska
David V. Marventano, Staff Director
James D. Barnette, General Counsel
Reid P.F. Stuntz, Minority Staff Director and Chief Counsel
______
Subcommittee on Health
MICHAEL BILIRAKIS, Florida, Chairman
JOE BARTON, Texas SHERROD BROWN, Ohio
FRED UPTON, Michigan HENRY A. WAXMAN, California
JAMES C. GREENWOOD, Pennsylvania TED STRICKLAND, Ohio
NATHAN DEAL, Georgia THOMAS M. BARRETT, Wisconsin
RICHARD BURR, North Carolina LOIS CAPPS, California
ED WHITFIELD, Kentucky RALPH M. HALL, Texas
GREG GANSKE, Iowa EDOLPHUS TOWNS, New York
CHARLIE NORWOOD, Georgia FRANK PALLONE, Jr., New Jersey
Vice Chairman PETER DEUTSCH, Florida
BARBARA CUBIN, Wyoming ANNA G. ESHOO, California
HEATHER WILSON, New Mexico BART STUPAK, Michigan
JOHN B. SHADEGG, Arizona ELIOT L. ENGEL, New York
CHARLES ``CHIP'' PICKERING, ALBERT R. WYNN, Maryland
Mississippi GENE GREEN, Texas
ED BRYANT, Tennessee JOHN D. DINGELL, Michigan,
ROBERT L. EHRLICH, Jr., Maryland (Ex Officio)
STEVE BUYER, Indiana
JOSEPH R. PITTS, Pennsylvania
W.J. ``BILLY'' TAUZIN, Louisiana
(Ex Officio)
(ii)
C O N T E N T S
__________
Page
Testimony of:
Balthazar, Larry............................................. 53
Blackwell, Charles W., Chickasaw Nation Ambassador to the
United States.............................................. 38
Coburn, Michael, President and CEO, Tuberous Sclerosis
Alliance................................................... 56
Cushing, Judy, Immediate Past President, National Family
Partnership................................................ 60
Furlong, Patricia, President, Parent Project Muscular
Dystrophy.................................................. 20
Gremillion, David H., Member, Board of Director's, Men's
Health Network............................................. 40
Hall, William J., President, American College of Physicians-
American Society of Internal Medicine...................... 45
Lundquist, Debra, Administrative Director, American Society
for Reflex Sympathetic Dystrophy/Complex Regional Pain
Syndrome................................................... 49
McMahon, Ed, National Vice President, Muscular Dystrophy
Association................................................ 18
Merenstein, Ray, Vice President, Programs Research!America... 26
Material submitted for the record by:
Condit, Hon. Gary, a Representative in Congress from the
State of California, prepared statement of................. 71
Cunningham, Hon. Randy ``Duke'', a Representative in Congress
from the State of California, prepared statement of........ 70
Hall, Robert, President, National Council of Urban Indian
Health, prepared statement of.............................. 73
Hayworth, Hon. J.D., a Representative in Congress from the
State of Arizona, prepared statement of.................... 71
McDermott, Hon. Jim, a Representative in Congress from the
State of Washington, prepared statement of................. 72
Peterson, Hon. Collin C., a Representative in Congress from
the State of Minnesota, prepared statement of.............. 72
(iii)
ADVANCING THE HEALTH OF THE AMERICAN PEOPLE: ADDRESSING VARIOUS PUBLIC
HEALTH NEEDS
----------
WEDNESDAY, JUNE 27, 2001
House of Representatives,
Committee on Energy and Commerce,
Subcommittee on Health,
Washington, DC.
The subcommittee met, pursuant to notice, at 1 p.m., in
room 2322, Rayburn House Office Building, Hon. Michael
Bilirakis (chairman) presiding.
Members present: Representatives Bilirakis, Upton,
Greenwood, Bryant, Ehrlich, Pitts, Tauzin (ex officio), Brown,
Barrett, Pallone, Eshoo, Stupak, and Green.
Also present: Representatives Stearns and Wicker.
Staff present: Marc Wheat, Majority counsel; Brent
DelMonte, majority counsel; Kristi Gillis, legislative clerk;
and John Ford, minority counsel.
Mr. Bilirakis. I see that Mr. Brown has entered the hearing
room. You are the limiting factor, Sherrod, which means we can
now get started.
I would announce at the outset that we were told that there
will be a series of three votes that will take place at any
time, so I've already alerted Mr. McMahon last night how very
rude we can be to the witnesses up here, and you'll see that we
will be rude because when those votes are announced we'll have
to just break it off and run and cast our votes and then return
afterwards.
The hearing will come to order. We have an ambitious agenda
for our hearing today, and I will limit my opening remarks in
the interest of time and would hope that all of the members of
the subcommittee will do the same.
First, I do want to thank our many witnesses for joining us
to testify on legislation that is very close to their hearts,
and I know each of the proposals we will discuss today also
means a great deal to, obviously, very many patients, many
families, and I have followed the work of these advocates.
I also want to extend a special welcome, and I hope the
rest of the witnesses won't mind my doing this, to Mr. Ed
McMahon, who is testifying today is his capacity as National
Vice President of the Muscular Dystrophy Association. I
understand this is the first time he has testified before a
congressional committee, and I understand he said he'll be
nervous, can you imagine Ed McMahon being nervous publicly?
But, I do want to--there go the notice on the votes--I do want
to reassure him that none of our witnesses today will be rated
for their performances. In all seriousness, I've greatly
enjoyed the opportunity to get to know Mr. McMahon. I was
particularly impressed by his life story, which starting with a
modest and difficult beginning, a Horatio Alger if you will,
embodies the American ideals of determination, self-reliance
and hard work. As a member of the Veterans Affairs Committee,
I'm also pleased to note that Colonel Ed McMahon served his
country, and I emphasize Colonel Ed McMahon, served his country
in the United States Marine Corps as a fighter pilot during
both World War II and the Korean War. Now, of course, he
continues to serve others by bringing more attention and
resources to fighting muscular dystrophy. We welcome you, sir,
and thank you for your many contributions to our Nation.
Mr. McMahon. Thank you, sir.
Mr. Bilirakis. There are so many worthy pieces of
legislation that we will be examining today, but I would like
to highlight one bill that Congressman Brown and I have
introduced to help address many of these concerns, and that is
H.R. 1340, the Biomedical Research Assistance Voluntary Option,
or as we like to call it, the BRAVO Act. Our bill would allow
taxpayers to designate a portion of their Federal income tax
refunds to support NIH research efforts. I believe that every
dollar invested in research today will yield untold benefits
for all Americans in years to come. Indeed, our own lives might
some day depend on the efforts of scientists and doctors
currently at work in our Nation's laboratories. Medical
research represents the single-most effective weapon against
diseases such as Duchenne Muscular Dystrophy and tuberous
sclerosis. The advances made over the course of the last
century could not have been predicted by even the most
farsighted observers. It's equally difficult to anticipate the
significant gains we may achieve in years to come to increase
funding for further medical research.
I would ask all of these groups here today, whose research
certainly needs help, we have committed some time ago, some 2,
3, 4 years ago, to doubling NIH funding over a period of 5
years, well, we are well on that path, but I know that we would
welcome additional dollars and these income tax refund dollars,
some of them chosen by people could be very helpful, but we
need your help to get particularly the Ways and Means Committee
to understand that and to allow that piece of legislation at
least to see the light of day.
Again, I want to thank all of our witnesses for taking the
time to join us. The members of this subcommittee, and the
millions of American patients on whose behalf you will testify,
are very grateful for your efforts. I'd like to try to get
through the opening statements, if it's at all possible, before
we run to vote. If not, we're just going to have to break and
we'll return as soon as we can.
[The prepared statement of Hon. Michael Bilirakis follows:]
Prepared Statement of Hon. Michael Bilirakis, Chairman, Subcommittee on
Health
The hearing will come to order. We have an ambitious agenda for our
hearing today, and I will limit my opening remarks in the interest of
time. First, I want to thank our many witnesses for joining us to
testify on legislation that is close to their hearts. I know each of
the proposals we will discuss today also means a great deal to many
patients, and I applaud the work of these advocates on their behalf.
I also want to extend a special welcome to Mr. Ed McMahon, who is
testifying today in his capacity as National Vice President of the
Muscular Dystrophy Association. I understand this is the first time he
has testified before a congressional committee, and I want to reassure
him that none of our witnesses today will be ``rated'' for their
performances!
In all seriousness, I have greatly enjoyed the opportunity to get
to know Mr. McMahon. I was particularly impressed by his life story,
which--starting with a modest and difficult beginning--embodies the
American ideals of determination, self-reliance and hard work. As a
member of the Veterans' Affairs Committee, I am also pleased to note
that Col. Ed McMahon served this country in the United States Marine
Corps as a fighter pilot during both World War II and the Korean War.
Now, of course, he continues to serve others by bringing more attention
and resources to fighting muscular dystrophy. We welcome you, sir, and
thank you for your many contributions to our nation.
There are so many worthy pieces of legislation that we will be
examining today, but I would like to highlight one bill that
Congressman Brown and I have introduced to help address many of these
concerns: H.R. 1340, the Biomedical Research Assistance Voluntary
Option or ``BRAVO'' Act. Our bill would allow taxpayers to designate a
portion of their federal income tax refunds to support NIH research
efforts.
I believe that every dollar invested in research today will yield
untold benefits for all Americans in years to come. Indeed, our own
lives might some day depend on the efforts of scientists and doctors
currently at work in our nation's laboratories. Medical research
represents the single most effective weapon against diseases such as
Duchenne muscular dystrophy and tuberous sclerosis.
The advances made over the course of the last century could not
have been predicted by even the most far-sighted observers. It is
equally difficult to anticipate the significant gains we may achieve in
years to come through increased funding for further medical research.
Again, I want to thank all of our witnesses for taking the time to
join us today. The members of this Subcommittee--and the millions of
American patients on whose behalf you will testify--are very grateful
for your efforts.
Mr. Bilirakis. The Chair now recognizes Mr. Brown.
Mr. Brown. Thank you, Mr. Chairman, and thank you, all the
members of the panel. We appreciate very much your being here
and discussing these bills.
I want to mention a couple of bills, as the chairman did,
to highlight, although I think everything we are looking at
today is pretty important. I want to thank Congressman Wicker
and Congressman Peterson for introducing the Duchenne Muscular
Dystrophy Child Assistance Research and Education Bill. I know
a couple of our witnesses especially are interested in that
issue. Muscular dystrophy is the world's No. 1 genetic lethal
childhood disorder affecting generally only males with rare
exceptions. It's estimated that one in 3,500 boys has Duchenne
Muscular Dystrophy worldwide, results in muscle weakness which
causes children to lose their ability to walk and ultimately in
many cases lose their lives.
In 1987, the gene which causes DMD was identified and
isolated, but unfortunately Federal research since then has
been close to minimal. To the family of a child with DMD, this
lost opportunity is hard to comprehend.
H.R. 717 would create three centers of excellence for DMD
research in the National Institutes of Health, and three
centers for epidemiology, data collection and surveillance at
the Centers for Disease Control in Atlanta. This is a
responsible next step to a remarkable discovery that science
made a decade and a half ago.
I want to thank my colleague, Congressman Green, a member
of this subcommittee, for his efforts to secure appropriate
funding for research in juvenile diabetes. That disease strikes
13,000 children a year, 35 each day. A 15-year old boy was in
my office yesterday who was diagnosed, in my District,
diagnosed with diabetes at the age of 2. He has 11,000 times
pricked his skin because of that disease in those 13 years.
Chairman Bilirakis and I, with the help of many advocates
including the Juvenile Diabetes Foundation, worked hard last
year in passage of the Children's Health Act, which established
a national commitment through research to research the issues
of the uniqueness of juvenile diabetes as opposed to adult
onset diabetes.
The Diabetes Research Working Group has called for an
accelerated and expanded diabetes research program at NIH.
The last bill I want to mention is the one introduced with
Chairman Bilirakis, that he mentioned, the Biomedical Research
Assistance Voluntary Option Act, BRAVO, as the chairman said it
would allow taxpayers to designate all or a portion of their
tax refund for biomedical research conducted through NIH.
As the chairman said, I also applaud the doubling of the
NIH budget. However, in large part because of a tax cut that
this Congress did last year, and the chairman doesn't like it
when I mention that, but as a result of the tax cut we did
earlier this year this Congress has not planned to increase
funding for the Centers for Disease Control. While we need to
continue to do the high-tech research at NIH, we also need the
public health aspect of the Centers for Disease Control, we
also need the other work in education and research that the
Centers for Disease Control does.
So, with that, I am pleased the chairman is having this
hearing today. I'm pleased at the good work that he has done,
and we've done together on these bills today, and I yield back
the balance of my time.
Mr. Bilirakis. The Chair thanks the gentleman.
Mr. Upton.
Mr. Upton. Thank you, Mr. Chairman.
Mr. Bilirakis. And, I would announce, after Mr. Upton's
opening statement, we are not going to be able to get through
before we have to cast that vote, so we'll break right after
Mr. Upton's opening statement.
Mr. Upton. Mr. Chairman, I'm going to introduce my opening
statement as part of the record and just briefly summarize it.
I want to thank you and particularly my friend Mr. Wicker.
I'm an original co-sponsor of the Duchenne Muscular Dystrophy
Childhood Assistance Bill. I certainly know a number of folks
that have that awful disease. I've always been a strong
supporter of finding the necessary medical research dollars to
combat so many of these different diseases, and I want to
applaud you, Mr. Chairman, for your leadership in this effort
every step of the way.
I, too, want to welcome my fellow Michigander, Mr. McMahon.
Mr. McMahon. Thank you, sir.
Mr. Upton. I know he was there only 6 weeks, but I know
he's been there since, for your leadership on this issue, and I
also want to highlight a front-page story in today's Washington
Post about a young lad at Children's Hospital who is making a
difference in the fight on these diseases, and I would ask
unanimous consent that this story be made part of the record.
Mr. Bilirakis. Without objection, that will be made part of
the record.
[The Washington Post article follows:]
[Wednesday, June 27, 2001--Washington Post]
With Poetry, a Sick Boy Lifts Others
Young Hospital Patient Gets Book Published
By Tracey A. Reeves, Washington Post Staff Writer
At first, the young boy with the soft smile, wispy blond hair and
gold wire-rimmed glasses too big for his face seemed startled by the
swollen crowd and flashing cameras.
All around him, people were stepping over each other to get a
glimpse of Matthew ``Mattie'' Stepanek, to hug his little body and
shake hands with the young poet.
But being the fearless fighter that he is, Mattie remained calm,
readjusting his slight frame in his motorized wheelchair as he delved
into the role of celebrity.
The 10-year-old from Upper Marlboro, who has a rare form of
muscular dystrophy that has claimed the lives of his three siblings,
recently learned that his wish of becoming a published poet had come
true.
Earlier this week, at a reception at Children's Hospital in the
District, Mattie showed off his colorful new book, ``HeartSongs,''
acknowledging those who made it happen.
``I want to thank all of my friends and all of my family and all of
my kin,'' Mattie said, his words interrupted by the thick tube in his
throat that puffs oxygen into his system. ``I know I'm in the hospital
and it's sad, but something good is happening.''
If ever there was a wish that Mattie wanted to come true, this was
it: to be lauded not for the medical struggles he has endured, but for
how he has transformed those struggles into a body of work that even
adults are at a loss to understand.
Cheryl Barnes--who with her husband, Peter, and their company, VSP
Books, compiled Mattie's poems in paperback form--said she had a hard
time believing that a child could write with such wisdom.
``He's bright beyond his years,'' Barnes said. ``He is truly a
remarkable child.''
The book wish is actually Mattie's second to be granted.
Two weeks ago, volunteers arranged for him to speak by telephone
from his hospital bed with former President Jimmy Carter, whom Mattie
has long hailed as a role model since learning about him as a student
at Mattaponi Elementary School in Prince George's County. Carter and
the boy spoke for about 15 minutes about the importance of resolving
conflicts in places such as Bosnia and Africa.
With his second wish now secured, Mattie is looking to make his
third wish come true. He wants Oprah Winfrey and Rosie O'Donnell to
read his poems on their shows.
``I'm going for them both,'' Mattie laughed. ``I love them both.''
Mattie's wishes might seem unusual indeed. Not at all like the
requests for trips to Disneyland, cruises or chances to swim with
dolphins that sick children often make.
But then Mattie has never been like other children, said his
mother, Jeni Stepanek, 41, a researcher on leave from her job at the
University of Maryland.
Stepanek said her son, a whiz kid who skipped two grades in
elementary school before she decided to teach him at home, draws
inspiration from stories of his older siblings--Katie, Stevie and
Jamie, who, like Mattie, were born with dysautonomic mitochondrial
myopathy, a disease that disrupts the body's breathing, processing of
oxygen and heart rate.
Stepanek said doctors did not fully diagnose the problem until
1992, when she was told that she had the adult form of her children's
disease. Worse, she had probably passed it on to her children.
``I get asked why we kept having children if we knew I had this,''
said Stepanek, who is divorced and uses a wheelchair. ``I didn't get
the genetic prognosis and diagnosis until all four children were born
and the youngest was 2. We just didn't have the information we have
now.''
Mattie, who at 45 pounds and 49 inches is small for his age, takes
his inspiration from the more mundane aspects of life.
In ``HeartSongs,'' he writes of smelling noise, tree stars in the
sky and snowflakes failing to the ground. In Mattie's eyes, dinosaurs
smile and dandelions are beautiful yellow flowers, not weeds. In one
poem, ``Leaf for a Day,'' Mattie writes:
Today, I think I will be a tree.
Or perhaps, a leaf on a branch on the tree.
I will feel the gentle breeze,
And then I will `plip' off my branch and my tree
And float in the wind.
At the media event for his book Monday, Mattie, a fan of Legos and
X-Men action figures, soaked up the attention, receiving
congratulations, gifts and heaps of lipsticked kisses. His doctors,
nurses, fellow patients and friends from his muscular dystrophy camp
had come for his debut, snapping up all 200 copies of the book.
Cheryl Barnes promised to print 500 more copies by Friday. In
addition, she and her husband gave Mattie a contract to publish a
second book.
On this evening, Mattie dressed up in black slacks, a white button-
down shirt and skinny red tie. Even his wheelchair was in style,
adorned with the words, ``Mattie the Pokemon Monster.''
As the crowd looked on, Mattie read a poem from ``HeartSongs,'' his
soft and breathy voice at times drowned out by the sounds of sniffles.
Later, he would tell the crowd, that he is certain a cure will be
found for his disease. Maybe not in his lifetime, but in another
child's lifetime.
The excitement was almost too much for Mattie, who has been
confined to a bed in the intensive care unit for the past three months.
By the time he locked eyes with a friend who had come to the hospital
for the event, Mattie, pale and weak, could barely manage a smile.
``Hey Mattie,'' yelled Ben Mox, 10, of Upper Marlboro. ``This is
way cool, huh?''
Mr. Upton. With that, Mr. Chairman, I yield back the
balance of my time.
Mr. Bilirakis. The Chair thanks the gentleman. Since he
used brevity, we will recognize Mr. Pallone for an opening
statement.
Mr. Pallone. And, thank you, Mr. Chairman, and I'll try to
be brief.
I'm particularly interest in H.R. 293, the bill to elevate
the position of the Director of Indian Health Service to an
Assistant Secretary level within the Department of Health and
Human Services.
Mr. Chairman, Indian country is united in its support for
this legislative initiative for many reasons, but first and
foremost because of the bill's recognition of the special
relationship between the 546 federally recognized Indian tribes
in the U.S. Government.
In 1976, Congress declared the policy of the Nation to the
American Indian people to assure the highest possible health
status for Indians, and this legislation will help make that
policy a reality.
The Department of Interior recognized the special status of
Indian people when it elevated the Director of the BIA to an
Assistant Secretary in 1977. It's now time for comparable
recognition to be given to the individual responsible for
health care delivery to over a million American Indians and
Alaska native people.
While Indian self-determination and recognition of a
government-to-government relationship has been the policy of
every administration since Nixon, within HHS decisionmakers
have not always understood the implications of this uniqueness
and the commitment to this special responsibility.
Just as an example, in `94 HHS, through the Health Care
Financing Administration, approved waivers to State Medicaid
plans for both Oregon and Washington, but it was only when
tribes read in newspapers what was happening and began asking
questions of both IHS and the states that a dialog began, and
it was the initiative of the tribes to ensure that the rights
of Indian patients to go to Indian health clinics, and the
rights of Indian health programs to bill for services provided
to Medicaid-eligible patients was protected.
I'm just using that as a story, Mr. Chairman, because I
want to wrap up, about how the Department activity has led
American Indians to view passage of H.R. 293 as critical. We
need an advocate for Indian health at the highest level of the
Department. It's not an option, it's a necessity.
If I could submit the rest of my statement for the record,
Mr. Chairman.
I just did want to say, though, that although today's
hearing and this bill is important, I hope that we might be
able at some time to consider H.R. 1662, the Indian Health Care
Improvement Act. This is another bill that basically
reauthorizes the Indian Health Service that a lot of members of
this committee and Congress on a bipartisan basis support.
And finally, I have a written statement, if I could submit
for the record, Mr. Chairman.
Mr. Bilirakis. Without objection, the written statement of
Mr. Stupak, and any other written statements of members of the
subcommittee will be made a part of the record.
[The prepared statement of Hon. Frank Pallone, Jr.
follows:]
Prepared Statement of Hon. Frank Pallone, Jr., a Representative in
Congress from the State of New Jersey
Thank you Mr. Chairman, for holding this important hearing today.
Of the bills under consideration, I am particularly interested in H.R.
293--the bill to elevate the position of the Director of Indian Health
Service to an Assistant Secretary level within the Department of Health
and Human Services.
Indian Country is united in its support for this legislative
initiative for many reasons, but first and foremost, because of the
bill's recognition of the special relationship between the 546
federally-recognized Indian tribes and the U.S. government. In 1976,
Congress declared it the policy of the nation to the American Indian
people to assure the highest possible health status for Indians. This
legislation will help make that policy a reality.
The Department of Interior recognized the special status of Indian
people when it elevated the Director of the BIA to an Assistant
Secretary in 1977. It is now time for comparable recognition to be
given to the individual responsible for health care delivery to over a
million American Indians and Alaska Native people. While Indian Self-
Determination and the recognition of a government-to-government
relationship has been the policy of every Administration since Nixon,
within HHS, decision-makers have not always understood the implications
of this uniqueness and the commitment to this special responsibility.
Over the past months, I have traveled throughout Indian Country
learning about the health care problems facing Native Americans.
Inevitably, I hear of an example where this has been the case.
In 1994, HHS through the Health Care Financing Administration
approved waivers to State Medicaid plans for both Oregon and
Washington. These waivers allowed the states to require Medicaid
patients to enroll in private-sector managed care health plans. Neither
HCFA nor the states consulted with IHS or tribes to determine the
impact this would have on Indian people or Indian health programs--
programs that depend on Medicaid collection for 20-40% of their clinic
operating budgets. Indian health programs were simply overlooked.
It was only when tribes read in newspapers what was happening and
began asking questions of both IHS and the states that a dialogue
began. It was the initiative of tribes that insured that the rights of
Indian patients to go to Indian health clinics and the rights of Indian
health programs to bill for services provided to Medicaid-eligible
patients were protected. Had an Assistant Secretary for Indian Health
Service been at the table when Department-level discussions of Medicaid
reform took place, the impact on Indian Health programs and Indian
people would have been foreseen and a great deal of time, money, and
effort saved.
Unfortunately, I have heard many stories like this. Department
activity has led American Indians to view passage of HR 293 as
critical. An advocate for Indian health at the highest levels of the
Department is not an option, but a necessity.
IHS is quite different from most Departments that primarily award
money to states, or research organizations to carry out programs. IHS
delivers direct health care either through Federally-operated or
tribally-operated programs. Someone knowledgeable of the Indian health
care system must be at the table when key decision-making is taking
place. To do otherwise is to leave Indian health care subject to
inadvertent harm.
As you can see, Mr. Chairman, passage of this bill is not only
necessary for consistency in government-to-government relationship
between the United States and Indian Tribes; but it plays a role in the
overall health of Indian Country. The leading position at IHS must be
allowed full participation in all budget processes and the opportunity
to be a strong advocate for all IHS proposals. I hope, Mr. Chairman,
that working together we can achieve passage of HR 293 and extend
equality to all Native Americans.
Today's hearing is important in terms of making progress on HR 293,
but I would hope that it might also serve as a stepping stone for
consideration of HR 1662--the Indian Health Care Improvement Act. I
serve as an original cosponsor of this legislation which seeks to
improve the care and education of Indian people by improving the
services and facilities of Federal Indian health programs and
encouraging maximum participation of Indians in such programs.
Thank you, Mr. Chairman. I look forward to hearing today's
testimony.
Mr. Bilirakis. I'm sorry, I didn't mean to interrupt you.
Mr. Pallone. That's fine. Thank you, Mr. Chairman.
Mr. Bilirakis. The Chair, 5 minutes, how much time will you
take, Roger?
Mr. Wicker. Whatever your pleasure. I won't take very long
at all, but I'll be happy to wait.
Mr. Bilirakis. Would you like to be heard now?
Mr. Wicker. Well, let me just say, if I may in about 2
minutes, Mr. Chairman.
Mr. Bilirakis. Well, we are going to have really run.
Mr. Wicker. That's fine, I'll wait. Really, you are the one
who controls the traffic on this bill, and I want to do exactly
what you think.
Mr. Bilirakis. We're going to wait then, because some of us
don't move as fast as we used to.
We are going to just break for--it will be some time,
because there are three votes, probably a good 25-30 minutes,
maybe a little less than that because so much time is expired
on the first vote.
Thank you.
[Brief recess.]
Mr. Bilirakis. The subcommittee will come to order.
Mr. Wicker is not a member of this committee or
subcommittee, but has requested the courtesy of being able to
sit in on the panel, at least for an opening statement, and
hopefully he'll sit for a little longer than that, and the
Chair is pleased to recognize him at this time.
Mr. Wicker. Well, thank you very much, Chairman Bilirakis,
and also to Ranking Member Brown who was with us earlier, and
who I'm sure will be back in the room shortly.
I'll be honest with you, Mr. Chairman, this is a thrill for
me. And I can tell you that it is a very special day for many
people in the audience, who have worked long and hard on the
issue of Duchenne Muscular Dystrophy and childhood Muscular
Dystrophy, for us to speak to you today, along with Pat Furlong
and Ed McMahon, on behalf of H.R. 717, legislation which I
introduced along with Representative Collin Peterson of
Minnesota. This legislation will enhance our Federal research
commitment to finding a cure for childhood Muscular Dystrophy.
Many people do not realize that Duchenne Muscular Dystrophy
is the most common and most lethal of our childhood genetic
disorders, and although the dystrophin gene which causes
Duchenne Muscular Dystrophy was successfully identified and
isolated by researchers as early as 1987, our Federal research
devoted to potential treatment options for a cure has not been
successful and has actually been minimal since that time.
I want to thank my colleagues for the overwhelming support
they've given to H.R. 717, as evidenced by the huge list of
original co-sponsors. Mr. Chairman, when we left the room
before the break we had 304 co-sponsors out of the 435 Members
of the House of Representatives. I'm pleased to say that we
added to our numbers during the vote and we now have 305 co-
sponsors and counting. So, hopefully, that will help the
committee to look favorably upon this bill.
I also want to express my particular thanks to the
scientists and researchers from the National Institutes of
Health who came into my office, who helped us refine the
language to make it more workable, and I certainly support the
language which we developed along with them, and which will
likely be offered as a substitute when this bill is considered
by the committee.
So, thank you for allowing me to be here and to introduce
the two witnesses who will testify. For your information, Mr.
Chairman, Pat Furlong is President and Founder of the Parent
Project Muscular Dystrophy. She has her own story which she
will tell the subcommittee, but suffice it to say that she has
been affected by this disease in a most personal and tragic
way, and I believe her testimony will be instructive to the
subcommittee. And then, of course, Ed McMahon, well, he's just
Ed McMahon. As the chairman alluded, he is an American classic.
He's one of our preeminent citizens in this country, and as the
chairman also mentioned, as we approach our 225th anniversary
of our independence, we are grateful to people of that greatest
generation that Ed McMahon represents. He has been a leading
spokesman throughout the Nation for Muscular Dystrophy
research, and so I'm delighted to be here on behalf of the bill
and to say thank you to our two outstanding witnesses.
Mr. Bilirakis. The Chair thanks the gentleman for being
here and certainly thanks him for his legislation. You've
worked on it, and I'm glad to see that we're finally getting
around to moving it, Roger.
The Chair now recognizes the gentlelady from California,
Ms. Eshoo.
Ms. Eshoo. Thank you, Mr. Chairman.
Good afternoon to you, and I want to be counted in amongst
the colleagues of this committee in thanking you for having
this hearing. It's an important one. I know you care about
every single one of these issues, and we're very grateful to
you for holding the hearing today and to all of the witnesses
that are here. To Mr. McMahon, I can't help but think that as
you announced so many winners in whatever that program was
where you were announcing, that you would be able to go out and
say that all of America is winning because of what the Congress
has decided to do. I think that that could be really the most
victorious message that comes out of this very important
subcommittee, where the first table is set for all of these
issues.
There are a wide variety of issues that the committee is
covering today, and that should be instructive to all of us and
reinforce the tremendous scope and appreciation for that scope
that this committee is responsible for. In one hearing, we are
discussing a variety of bills and resolutions that deal with
the public health issues that range from Muscular Dystrophy, to
ensuring the availability of flu vaccine, it sounds kind funny
that we have to do that, but I think the last thing that we can
do in this country is to be complacent. We just assumed that
there is a steady flow of what we need, and yet, here in the
Congress, we in our seats are the ones that are going to assure
that, and also to the issue of juvenile diabetes, to biomedical
research at the NIH, which I have always called affectionately
our ``National Institutes of Hope,'' because they do speak of
the hope and the dreams that the American people have, and we
have to make good on that.
I'd like to speak specifically about one of the bills we
are discussing today, and I hope that we're all in agreement on
the great need to pass Congressman Gene Green's resolution
advising the Congress to increase the funding for diabetes
research at the NIH over the next 5 years. I think some of my
colleagues were visited by student delegates that have come to
the Hill this week. I had two in my office yesterday, 9 and 12
years old, I believe, and one of them, the younger one, Mary,
said to me, ``I want you to know something. When we get a cure,
if there isn't enough, I'll give mine up for someone else.''
Now, this is a 9-year old. And, you know, I mean her mother
kind of turned the other way and was wiping the tears out of
her eyes. So, I mean, look at the unselfishness of this child
and what she expressed.
So, I think--I know that we can do this, I mean, this is a
gathering of a good group of people here at this committee, so
we should forthwith past that, and I'm proud, obviously, to
support that.
Obviously, the legislation, we have legislation that
provides the CDC the funds and the direction to ensure that
states receive their flu vaccine orders from manufacturers and
distributors in a timely manner. We have to make good on this,
and so this is something else that the committee just forthwith
I think needs to pass and to get to the floor, and I don't
think anyone in this country could ever dream of being placed
in the situation where we don't have the resources to do this.
And finally, another bill that I'm proud to support
legislation introduced by our chairman, to allow taxpayers to
designate part or all of their income tax refund to be paid
over for use in biomedical research conducted through the NIH.
And, I just got an idea, Mr. Chairman, when I get my $300.00
refund, which I don't think would take my family out to dinner,
but better spent I'll donate that. It's a drop in the bucket,
but at least it bears some significance in terms of where it's
going.
So, I think that your idea is one that's long overdue, we
should take action on that, and I want to thank everyone that's
in the room here today and beyond this room that are the
unswerving advocates on these issues. The Congress is a
reactive institution. We shouldn't be reactive, we should be
long-term planners and thinkers, but truth be known we are
reactive, and we reactive to the agenda and the hopes and the
aspirations of the American people, and I don't think many
things would be in front of us, or continue to be in front of
us, were it not for your advocacy.
So, let's roll up our sleeves, let's get this stuff done.
Thank you, Mr. Chairman, for your leadership and your vision,
and to everyone that's here today. Thank you.
Mr. Bilirakis. And, I thank the gentlelady.
Mr. Greenwood, for an opening statement?
Mr. Greenwood. Thank you, Mr. Chairman. I'll be very brief.
Thank you for holding this hearing. In the last Congress, as
everyone will recall, we had a variety of bills that were aimed
at children's health, and we were able to hold a hearing like
this and then group those bills together into one children's
health bill, which was one of the most useful things I think
the last Congress did. And, I'm hopeful that this session will
be able to package all of these bills together and move them as
an adults' package that would help, not only adults, but
children as well, and I think once we add my Lyme disease bill
to that package it will be just about perfect.
I yield back the balance of my time.
Mr. Bilirakis. I thank the gentleman in the interest of
time.
Mr. Green, we've had Greenwood, now we have Green.
Mr. Green. Thank you, Mr. Chairman. We just dropped off our
name, we moved from Pennsylvania.
Mr. Chairman, I thank you for, one, holding the hearing
today on the many issues that we have, but most importantly the
bill H.C.R. 36 that I introduced with 80 plus co-sponsors which
recognizes the burden of Type I Diabetes, known as Juvenile
Diabetes. I'd like to take the opportunity to welcome both two
friends, but also constituents here, Larry Balthazar and his
family are from my district in Houston, and young Larry is back
behind them. Isn't he the cutest young man that I think we
have. I've been working with the Balthazars on this issue for
several years, and Larry was diagnosed with Juvenile Diabetes,
and I'm pleased that they are here today to share how Juvenile
Diabetes has affected their family.
Juvenile Diabetes is a serious and life-threatening disease
that affects more than 1 million Americans, many of whom like
Larry are diagnosed as children or during their adolescence.
This dreaded disease robs these children of their innocence and
independence and forces them in a lifelong regimen of insulin
injections, blood sugar tests and careful diet. Even with this
careful regimen, people with diabetes face an increasing risk
of dreaded complications, including blindness, lower limb
amputation, kidney failure, heart disease and stroke. Some
people don't understand the seriousness of diabetes or think
it's a matter of just watching what you eat, but it's much more
serious than that.
Can any of us imagine a childhood where we couldn't have
our birthday cake, or where playing too much at recess causes
us to pass out? As parents, we can't imagine having to hold our
children down and giving them a shot of insulin. Unfortunately,
there are daily battles that hundreds of thousands of Americans
with Type I Diabetes must face. They can't take a day off from
diabetes or leave it at home when they go on vacation. They can
only take their shots and monitor their blood sugar and diet,
and hope and pray for a cure.
Fortunately, that cure is not too far away. Promising new
research, such as islet cell transplantation, have offered hope
to millions of Americans living with diabetes. Research on new
treatments such as non-invasive blood glucose monitoring and
insulin inhalers, at least offer people with diabetes a pain-
free alternative to injections and finger pricks. But
insufficient funding levels prevent researchers from achieving
the breakthroughs that seem to be so close.
The Diabetes Research Working Group was established by
Congress in 1997 to develop a comprehensive plan for diabetes
research. This team of diabetes experts released a plan which
would increase the effectiveness of NIH-funded diabetes
research and identify areas where additional resources could
result in better treatments and cure for this dreaded disease.
But, in order to achieve the full potential of the Diabetes
Research Working Group's recommendation, Congress must make a
significant increase in research funding. In fact, the Diabetes
Research Working Group recommends a $4 billion increase over
the next 4 years, and I know with this increase in funding we
could realize a cure for diabetes. That's why the message of
H.C.R. 36 is so important. It recognizes the burden of Juvenile
Diabetes and urges Congress to fully fund diabetes research at
the level recommended by the Diabetes Research Working Group.
I'm pleased, Mr. Chairman, again, thank you for including
this legislation, and I thank the 80 plus colleagues that have
co-sponsored it, and I look forward to hearing the witnesses,
and I yield back the balance of my time.
Mr. Bilirakis. I thank the gentleman, and thank you also
for the hard work on that legislation. We certainly will plan
to address it.
Chairman Tauzin, the chairman of the full committee.
Chairman Tauzin. Thank you, Mr. Chairman. I want to commend
you for this important hearing, which will consider a number of
bills and resolutions that are aimed toward advancing public
health. I especially want to commend you, Mr. Bilirakis, for
calling a hearing that is going to partially focus on some
diseases that, while known only to a very few, destroy the
lives of those afflicted. For example, I imagine that only a
very small number of Americans have ever heard of tuberous
sclerosis, and yet every day two children will be born with
this disease, and many of these children will develop epilepsy
and autism.
The Congress needs to raise the awareness about this
disease and declare its responsibility for supporting research
into discovering the causes of genetic mutation that leads to
tuberous sclerosis.
Further, while Reflex Sympathetic Dystrophy impacts the
lives of the 7 million children and adults suffering with the
disease, as well as their care givers, it's still fairly
unknown to most Americans. Individuals suffering from RSD
exhibit such painful symptoms as chronic inflammation, spasms,
burning pain, stiffness, discoloration of the skin, muscles,
blood vessels and bones. So, we are pleased that today's
hearing will focus attention on this disease, and I want to
commend Mr. Barrett from Wisconsin for introducing the RSD
resolution.
Tuberous sclerosis and RSD are just two matters which will
be considered today. The committee will also turn its attention
to bills and resolutions intended to better the lives of those
suffering from Duchenne Muscular Dystrophy, Juvenile Diabetes
and prostate cancer.
I'm pleased today to have co-sponsored my good friend, Mr.
Wicker's, bill, that I understand the NIH is in broad support
of. Further, we will hear testimony from witnesses who will
advocate better access to the flu vaccine, support for drug-
free communities, and elevating the Director of the Indian
Health Service to the level of Assistant Secretary.
And last, Mr. Chairman, I'm very interested in learning
more about legislation which would allow taxpayers to direct a
portion of their tax overpayments directly to the National
Institutes of Health, for the purpose of increasing biomedical
research funding. The Congress as a whole has been working for
years to increase NIH funding. I view your bill as a way of
empowering Americans to join us in this cause.
My own wife serves on the board of the Children's Inn
there, and so I know firsthand, not only of the great and
generous work that citizens of America do in supporting that
center, but the broad work of the NIH itself.
Mr. Chairman, I also want to mention to you that every day
one of us becomes aware of one of these relatively unknown
diseases. I became aware of one called Friedreich's Ataxia,
because a young lady who has worked for me ever since I served
in the Louisiana Legislature 30 years ago happened to marry a
man of Cajun descent here in Washington, DC, and the
combination of their genetic background produced a child with
Friedreich's Ataxia, a disease that happens to impact the Cajun
population in America, about 2.5 times the general population.
There are all kinds of diseases like that we just don't know a
whole lot about, that strike young people and children, and in
this case that amazing young son of theirs, Keith, is growing
into adolescence knowing that by the time he's 23 he'll lose
all muscular control. He's already experiencing the ravages of
that disease in many important ways in his life, and it's so
sad to see him going through it and knowing that, you know,
research is just around the corner that's going to produce a
cure or find some way to prevent it, and we can only hope and
pray for all the families of Americans who find their children
born with these little-known, but devastating, diseases, that
we have done all we can while we are here to try to promote
research, and trials, and particularly the kind of cooperation
in genetic research that we understand holds so much promise in
finding causes and cures and eventual prevention.
So, this is an important hearing today. It is some of the
most important work the Energy and Commerce Committee does. It
touches real lives, and it creates real hope in people who
today look upon the situation as hopeless.
And so, Mr. Chairman, thank you for calling it, I wish you
well and God speed in this work, and I look forward to
receiving the bills in the full committee.
Mr. Bilirakis. Thank you, Mr. Chairman, and thanks for
being here and for your interest.
Mr. Barrett.
Mr. Barrett. Thank you, Mr. Chairman, for convening today's
hearings. I'm looking forward to hearing from all the witnesses
and learning more about the health initiatives before us today.
In particular, I'm glad to see that there's a measure on
the table in support of increased funding for Juvenile Type I
Diabetes. Children's Hospital of Wisconsin in my district
conducts very little research on Juvenile Type I Diabetes,
which affects over 1 million Americans. Certainly more research
dollars are needed to help cure this disease.
I'm also very pleased that the committee has the
opportunity to hear from Debra Lundquist of the American
Society of RSD, CRPS, who will explain why a House concurrent
resolution which I introduced to increase awareness about
Reflex Sympathetic Dystrophy is so desperately needed. I first
learned about RSD through an impassioned letter from a teenage
girl living in Milwaukee who suffers from this disease. At age
12, Betsy Herman contracted RSD after spraining her ankle. She
complained of an excruciating burning and aching pain in her
limbs, common in RSD patients, but because of a lack of
understanding about this disease her condition went
undiagnosed. In fact, Betsy was accused of faking and
exaggerating her illness and was sent to psychological
counseling. Proper diagnosis and treatment can lead to full
remission if the disease is caught early enough. This,
unfortunately, wasn't the case for Betsy who has undergone
several surgeries and now must walk with the help of an
implanted device, and while other kids her age played sports
and attended dances, Betsy had to wait until classes were in
session to walk the halls of her high school to assure that she
wasn't bumped, because even the slightest touch can cause
severe pain.
As Ms. Lundquist will tell you, it is estimated that about
7 million Americans are afflicted with this disease, more
people than suffer from Parkinson's, AIDS and Alzheimer's
combined, yet there's a serious lack of awareness about RSD
which means research efforts are miserably underfunded and
treatment can be woefully inadequate.
That is why Betsy, Deb Lundquist, and other RSD patients
and care givers have called on Congress to take a proactive
stance in raising awareness among medical personnel and the
general population about this disease. In response, I have
introduced a resolution designed to bring attention to RSD.
The measure recognizes that advocates have designated each
May as National RSD Awareness Month, and applauds their efforts
for bringing attention to the disease. The bill also encourages
all Americans, including health care providers, to become
familiar with the symptoms of RSD, since early detection is
vital to a full recovery. In addition, the measure asserts that
the Federal Government has the responsibility to work to
increase funding for RSD research and to consider ways to
improve patients' access to quality health care services.
With congressional support, we can help advocates direct
attention and research dollars to treating and, hopefully,
curing RSD, while increasing compassion for its sufferers.
Again, thank you for holding this hearing today. I look
forward to hearing from Ms. Lundquist and all the witnesses
present, and I would yield back the balance of my time.
Mr. Bilirakis. I thank the gentleman.
Mr. Ehrlich, the gentleman from Maryland, for an opening
statement.
Mr. Ehrlich. Thank you, Mr. Chairman.
I have a prepared statement, but I do want to make a point
or two, and I appreciate the full committee chairman, who is
leaving the room now, for allowing this hearing to occur, and I
appreciate your concern with regard to these issues.
Many of us have appointments today for those of you not
used to Capitol Hill, so we are running in and out and going
different places, but please know on particularly a day like
today we read your testimony.
This is about as nonpartisan an issue, a subject, a
hearing, as you can have in this place. I often think, there
are two places that are nonpartisan on the Hill, one is the
House gym and the other is with regard to these issues, and I'm
serious about that.
As the chairman stated, these issues, these individual
diseases, impact all of us. There are ways that we can, elected
officials, help. One, obviously, is to lend our names, whatever
credibility we happen to have, with respect to boards, fund
raisers and the like, and we all do that, both sides of the
aisle. Second, funding NIH, which has been a good, and popular,
and right thing to do here, even in tough fiscal times. And
third, manipulating the tax code and to increase, in various
innovative ways, money going to research.
With that being said, I am particularly interested in this
hearing today with regard to, Mr. Chairman, Duchenne Muscular
Dystrophy, and that has impacted the family of a close friend
of the Ehrlich's, and we can all say that. As you know, all of
you could say that, and most folks you stop on the street could
say the same thing, it's the most common form of genetic
childhood disease.
What's particularly frustrating, I guess, to some of us who
have begun to follow this disease and are supporting this bill
I'll get to in a second, is the fact that the gene was
identified and isolated by researchers in 1987. My wife sits on
the Cystic Fibrosis Board in Maryland, she was President, so
I'm familiar with how important a development that is with
regard to disease processes, but the research devoted and the
dollars devoted to additional research has been rather minimal,
and the numbers speak for themselves.
I do want to particularly commend my colleagues, Collin
Peterson and Roger Wicker, who is here, I believe, for
introducing H.R. 717, this CARE Act. The legislation will
increase funding available for researching DMD, directing NIH's
attention to solving this problem, and better educate the
public with regard to this disease.
I also want to recognize Parent Project, and important
organization for families of sufferers of DMD, a project I'm
finding out more about myself, and thank them for their
continued efforts to significantly increase the research
dollars.
I ask all my colleagues in closing to support 717 and to
support the families and children who wake up every day and
must face this dreaded disease, and I yield back my time.
[The prepared statement of Hon. Robert L. Ehrlich, Jr.
follows:]
Prepared Statement of Robert Ehrlich, a Representative in Congress from
the State of Maryland
Mr. Chairman, thank you for holding this important hearing on
legislative measures designed to address certain public health needs. I
want to specifically call the Subcommittee's attention to a common
childhood genetic disorder-Duchenne Muscular Dystrophy (DMD)--that
affects approximately one in every 3,500 boys worldwide.
DMD is the world's most common form of genetic childhood disease.
As the disease progresses, muscle deterioration in the back and chest
exerts pressure against the lungs, making it difficult to breathe. By
age 10, children born with DMD will lose the ability to walk. The
deterioration process continues until it ultimately takes the boy's
life, typically by the late teens or early twenties.
Although the gene that causes DMD was successfully identified and
isolated by medical researchers in 1987, federal research devoted to
potential treatment options or a cure since this initial discovery has
been minimal. Of the $17.8 billion allocated for the National Institute
of Health (NIH), only $9.2 million is invested in medical research
specific to DMD. This limited federal support has resulted in minimal
treatment options aimed at managing the symptoms, not treating the
disease.
I want to commend my colleagues, Roger Wicker and Colin Peterson,
for introducing H.R. 717, th DMD Childhood Assistance, Research, and
Education (CARE) Act. This legislation will increase the funding
available for researching DMD, direct NIH's attention to solving this
problem, and better educate the public on this tragic disease. Also, I
want to recognize Parent Project, an important organization for
families of sufferers of DMD, and thank them for their continued
efforts to significantly increase research at the federal level.
In closing, I ask all my colleagues to support H.R. 717, and to
support the families and children who must wake up every day and face
this dreaded disease. Thank you.
Mr. Bilirakis. I thank the gentleman for his opening
statement. The opening statements of all members of the
subcommittee are now terminated, and we will go on to the
witnesses who have been very patient and understanding, and we
appreciate that very much. You are all welcome.
[Additional statements submitted for the record follow:]
Prepared Statement of Hon. Chip Pickering, a Representative in Congress
from the State of Missippi
Mr. Chairman, I want to thank you for holding this hearing and for
your support for H.R. 717, the DMD Care Act of 2001. I also want to
thank my friend and colleague from Mississippi, Mr. Wicker, for
introducing the legislation we are considering today. I was proud to be
among the original sponsors of this legislation with you and many other
members of this Committee, and I note that the bill now has the co-
sponsorship of 2/3rds of the House.
First of all, I would like to congratulate the Parent Project and
all of the dedicated family members of children with this terrible
affliction for their effective advocacy. I think they're truly made the
case that the world's #1 lethal childhood genetic disorder deserves
more than 1/2500th of the NIH budget. I am pleased to learn that when
this legislation is marked up, it will reflect all muscular
dystrophies, and I encourage the MDA's support.
The goal of this legislation is not to put muscular dystrophy at an
advantage compared to other diseases of similar prevalence and
severity, but rather to try to elevate it to a position of parity. Our
Committee was instrumental last year in assuring the passage of a
modest musculardystrophy title to the Children's Health Act calling for
intensification of research on this disease. Since that time, NIH has
offered a new Program Announcement of $5 million over three years. This
is a positive development but more needs to be done. NIH must reorder
its priorities to assure that developments in therapies to treat this
disease are translated to clinical trials and to the patients.
I'm very pleased that our Committee is now poised to act on this
legislation. I hope and trust that this legislation can be passed
unanimously on the House floor before the August district work period,
and that the other chamber will rapidly follow. I am very pleased to
know that NIH officials have reviewed this legislation and they have
suggested some changes which we can easily incorporate upon markup. It
is clear that this is legislation that NIH can live with, and I would
encourage NIH officials to go even further in their own efforts to
escalate the pace of research into these diseases which take such a
horrific toll on the lives of so many American children.
I look forward to the testimony of Ms. Furlong, as the mother of
two boys who have succumbed to DMD, as well as the testimony of Mr.
McMahon on behalf of the Muscular Dystrophy Association. Thank you.
______
Prepared Statement of Hon. Chip Pickering, a Representative in Congress
from the State of Missippi
Mr. Chairman, thank you for having this important hearing on public
health issues that affect all Americans. I would like to express my
support for the bill H.R. 293, the legislation we are considering today
that would elevate the position of the Director of the Indian Health
Service (IHS) to Assistant Secretary of Health and Human Services
(HHS).
This legislation will be beneficial to all Alaskan Natives and
American Indians including the Mississippi Band of Choctaw Indians, led
by Chief Phillip Martin, in my congressional district. I would like to
ask unanimous consent to submit a letter of support for this
legislation for the record from Chief Martin.
Mr. Chairman, as you know, the IHS is the lead agency in providing
health care to the more than 550 Indian tribes in the United States.
Services ranging from facility construction to pediatrics assist
approximately 1.3 million American Indians and Alaska Natives each
year.
The IHS currently falls under the authority of the Public Health
Service within HHS. The IHS Director is the top administration official
charged with carrying out the federal trust responsibility for IHS, but
he does not report to the HHS Secretary.
Designating the IHS Director as an Assistant Secretary of Indian
Health would afford IHS a stronger advocacy function within HHS, and
allow for increased representation during the budget process. Similar
legislation passed the Senate in 1999 by unanimous consent and there is
no cost to the federal government associated with this bill.
Mr. Chairman, let me say thank you again for having this hearing
today on a wide range of public health issues and I hope the
Subcommittee will look favorably on H.R. 293. Thank you.
Mr. Bilirakis. The Chair now would recognize the gentleman
from California, a gentleman of the world, Mr. Ed McMahon,
National Vice President of the Muscular Dystrophy Association.
Mr. McMahon, please proceed. We have a little clock here we set
on 5 minutes. Obviously, if your statement would require a
little more time than that we are certainly not going to cut
you off.
STATEMENTS OF ED McMAHON, NATIONAL VICE PRESIDENT, MUSCULAR
DYSTROPHY ASSOCIATION; PATRICIA FURLONG, PRESIDENT, PARENT
PROJECT MUSCULAR DYSTROPHY; RAY MERENSTEIN, VICE PRESIDENT,
PROGRAMS RESEARCH! AMERICA; CHARLES W. BLACKWELL, CHICKASAW
NATION AMBASSADOR TO THE UNITED STATES; DAVID H. GREMILLION,
MEMBER, BOARD OF DIRECTOR'S, MEN'S HEALTH NETWORK; WILLIAM J.
HALL, PRESIDENT, AMERICAN COLLEGE OF PHYSICIANS-AMERICAN
SOCIETY OF INTERNAL MEDICINE; DEBRA LUNDQUIST, ADMINISTRATIVE
DIRECTOR, AMERICAN SOCIETY FOR REFLEX SYMPATHETIC DYSTROPHY/
COMPLEX REGIONAL PAIN SYNDROME; LARRY BALTHAZAR; MICHAEL
COBURN, PRESIDENT AND CEO, TUBEROUS SCLEROSIS ALLIANCE; AND
JUDY CUSHING, IMMEDIATE PAST PRESIDENT, NATIONAL FAMILY
PARTNERSHIP
Mr. McMahon. Thank you, Mr. Chairman, it will not. I will
do it as quickly as I can, to give everybody else as much room
as they need, but I appreciate being here. I'm honored by it.
I'm fascinated by it, and it's quite a nice learning lesson for
me.
I am here representing MDA and the 250,000 people that are
afflicted with that disease, and though I'm not an expert in
any sense of the word I have an expert behind me, this pretty
lady right here, Doctor Sharon Hesterlee. You see her there?
All right. She is our Director of Research Development, and all
these pages I have, I only have three and a fifth right here,
all these pages that I have could be summed up by what happened
to me when I came into the building. I was waiting my turn to
come through the security check, and as I came through the
lady, security lady, said, ``Well, what brings Mr. McMahon to
our building?'' I said, ``Well, normally I give away money,
here I'm trying to get some money.'' It's a different role for
me, but for 50 years we have been funding this activity,
Muscular Dystrophy Association, and we're almost a victim of
our own success. We've been very successful over the years
raising--last year we raised $55 million in a 21-hour period.
It's quite remarkable that the American people get behind us so
actively.
So, I'm here with hat in hand hoping that we can get a
little money from the government. That's, essentially, what I'm
doing here.
Let me just point out some things. For 50 years, MDA has
been finding the top scientists in the world and funding their
efforts to find what causes Muscular Dystrophy and how we can
stop it. Now, we've made some very dramatic advances, 25 years
of cellular biology, we've been able to locate genetic causes
of almost all forms of Muscular Dystrophy.
Now, in just the past few years, MDA funded scientists have
developed techniques that will allow us to attempt to fix
genetic flaws that underline Muscular Dystrophy by inserting
new genes into the human body. Now, these heroes of modern
science are poised to test gene therapy for several forms of
that disorder. The only thing that can slow our relentless
pursuit and our advance toward treatments is money. So, until
recently MDA has been able to handle this all by themselves,
but now we need some help.
Muscular Dystrophy can result in a variety of different
genetic mutations. Each mutation may require its own specific
form of gene therapy. The cost of a clinical test of one
genetic fix, for one particular disease, is $20 million. When
you consider there are nine forms of Muscular Dystrophy, and
some of those nine forms can result in many several different
other defects, you can see why money is a major roadblock.
Now, in no way are we here to get money for us. The money
is not for the Muscular Dystrophy Association. What we really
want is money for the research centers that will be developed.
Mr. Brown referred to this Article 717, and the CARE Act, 8105,
I'd like to enter this into the hearing record if I may, Mr.
Chairman.
Mr. Bilirakis. You learn quickly.
Mr. McMahon. Am I all right?
Mr. Bilirakis. Without objection.
Mr. McMahon. I remember this from high school.
Anyway, we are seeking $100 million, and that may seem like
a lot of money to a lot of people and it is, but it's what we
need so that people can walk again. Imagine what it's like for
someone to have the ability to see their daughter down the
aisle at her marriage, or to see a mother watch a child walk
for the first time at 10 years old. Well, it's right here, it's
waiting at the doorsteps. It's here for us. Money will make the
difference.
So, rather than selling you something, I normally am
selling. If you've watch television on any day for the last 53
years I've been selling something, from dog food, to beer, to
automobiles, you name it, I've sold it, and I hope that I can
sell this and make a point that this is something we need. We
need your support, and we're going to sum it up by saying, help
us find a cure, help us solve this problem. We need it, and it
will be good for America.
Thank you.
Mr. Bilirakis. Thank you so much, sir. I would hope that
you could help us with that BRAVO bill so we can get additional
dollars coming from the public to NIH to supplement research,
to complement the research.
Mr. McMahon. It was mentioned before, I was not aware of
that, but if that can be put into the income tax system that
would be wonderful.
Mr. Bilirakis. Yes. I'm going to get your address so we can
help you out there.
Mr. McMahon. You have my help.
[The prepared statement of Ed McMahon follows:]
Prepared Statement of Ed McMahon, National Vice President, Muscular
Dystrophy Association
Thank you Mr. Chairman and members of the Subcommittee. It's an
honor to represent the Muscular Dystrophy Association and the 250,000
Americans affected by muscular dystrophy.
As you're aware, during my lengthy career in show business, besides
hosting my own shows and spending a few years helping out some guy
named Johnny, I've been a pitchman. Beer, dog food, insurance,
magazines--you name it, I've helped sell it. Well, I'm here today to
make a pitch to you. I don't want to sell you any products, but I do
want you to buy something. What I'm selling is a dream--one you can
make come true.
Obviously, I'm not trained as a physician or a researcher. I've got
a pretty good layman's understanding of the nine forms of muscular
dystrophy and where the research into finding treatments and cures is
at the moment, but I don't pretend to be an expert. That's why I've got
Dr. Sharon Hesterlee, MDA's director of research development, here with
me to handle any technical questions you might have. However, after
spending more than 30 years serving as anchor of MDA's Labor Day
Telethon with Jerry Lewis and doing my best to help the Association in
any other ways I could, I do consider myself an expert on the human
side of muscular dystrophy. Over the years, I've had the opportunity to
meet and get to know many wonderful children and adults with MD.
Unfortunately, many of them are not with us today. And that's why I am
here today, and that's why I hope you're going to buy what I'm selling.
For more than 50 years, MDA has been funding the top scientists in
the world in an effort to find out what causes muscular dystrophy and
how we can stop it. With the dramatic advances made in the past 25
years in cellular biology, we've been able to locate the genetic causes
of almost all the forms of muscular dystrophy. In just the past few
years, MDA-funded scientists have developed techniques that will allow
us to attempt to fix the genetic flaws that underlie muscular dystrophy
by inserting new genes into the human body. These heroes of modern
science are poised to test gene therapy for several forms of the
disorder. The only thing that can slow our relentless advance toward
treatments and cures is money. Until recently, MDA managed to fund all
the research into muscular dystrophy that was scientifically justified.
That's no longer the case.
The problem is that some forms of muscular dystrophy can result
from a variety of different genetic mutations. Each mutation may
require its own specific form of gene therapy. The cost of a clinical
trial to test one genetic fix for one particular disease-causing flaw
is $20 million. When you consider that there are nine forms of muscular
dystrophy and that some of those nine forms can result from any of
several different defects, it's easy to see why money is a major
roadblock to testing this potential treatment. Despite the incredible
generosity the American people show for MDA each year, there's no way a
nonprofit organization like ours can possible afford to fund this vital
research. For the first time in the history of the Muscular Dystrophy
Association, we're asking the federal government to help in this fight.
We don't ask for a penny for ourselves, but for an annual increase of
$100 million in National Institutes of Health funding for muscular
dystrophy research--money that will be distributed directly to the
researchers trying to make treatments and cures for these devastating
disorders a reality.
I've never tried to sell anything that cost $100 million before,
but I've never had a product that I believed in as much as I do this
one. Treatments and cures for muscular dystrophy would be a bargain at
many times this price. We're talking about diseases that rob people of
the ability to walk, to dress themselves, to feed themselves,
eventually, even to breathe. We have to ask ourselves, how much is a
human life worth? How much are tens of thousands of lives worth? Can
you place a value on the smile on a mother's face when she sees her
child walk for the first time at 10 years old? Or set a price on the
pride a father feels at walking his daughter down the aisle on her
wedding day because he was able to beat a disease that tried to steal
his life? No product ever sold can offer so many benefits of such great
value.
What do I get out of making this sale? I get some sense of peace
from knowing that I've played a small part in fulfilling the promise
that all of us at MDA made long ago--that we wouldn't quit until
treatments and cures for muscular dystrophy are a reality. Each time
I'm reminded of a special friend lost to this terrible disease--and
believe me, after this many years it happens often--I can whisper, it
wasn't in vain my friend. You helped us get here. You helped us make
the dream come true.
When legislation calling for increased NIH funding for muscular
dystrophy research comes before you, I hope that you'll remember the
quarter of a million Americans waiting for a miracle, and that you'll
decide to make a difference, to save lives, to make this dream come
true.
Thank you from all of us who still believe in miracles.
Mr. Bilirakis. Ms. Pat Furlong is the President of Parent
Project Muscular Dystrophy, located in Middletown, Ohio.
Ms. Furlong, please proceed.
STATEMENT OF PATRICIA FURLONG
Ms. Furlong. Thank you.
I'd first like to express my appreciation to Chairman
Bilirakis, Ranking Member Sherrod Brown, and members of this
committee, for the opportunity to testify. Boy, what a day for
the Muscular Dystrophy community.
I want to express my special thanks to Representatives
Roger Wicker and Collin Peterson. They have been our champions,
and we are very, very grateful.
I represent Parent Project Muscular Dystrophy, a voluntary
health organization comprised of parents and grandparents whose
children have been diagnosed with Duchenne or Becker Muscular
Dystrophy. We wish to expedite a treatment and cure for this
disease. It is a heartbreaking disease.
Mr. Chairman, today I'm here to testify in support of
legislation introduced this year with respect to Duchenne
Muscular Dystrophy. Let me take a moment to say that Duchenne
Becker Muscular Dystrophy represents 90 percent of the muscular
dystrophies. This is the reason that we are here on the Hill.
For years, families have been smothered in public
information that states we are almost there, we are around the
corner, shortly there are answers. We are not quite there.
Although emerging strategies leading to treatment and therapy
in the future are in the works, Federal investment in Duchenne
Muscular Dystrophy research has been minimal. We have to commit
adequate resources to support the prognosis to see significant
change in Duchenne Muscular Dystrophy.
My commitment to the Duchenne Muscular Dystrophy community
stems from two convictions. My two boys were diagnosed in 1984,
they died at ages 15 and 17. Second, my role with the Parent
Project Muscular Dystrophy as President and Founder.
On a sunny day in June in 1984, a physician said to me,
your sons have Duchenne Muscular Dystrophy, there is no hope,
there is no help. Your daughters may be carriers. I'm not sure
your family will survive. I wondered at that point why the sun
still shined.
The barriers to progress on this disease says little for us
as a society and a Nation, that due to significant lack of
resources clinical outcomes for this disorder are predictable
and remained unchanged. Boys die before reaching 20, before
reaching adulthood, before experiencing life.
One day long ago, my son Patrick was trying to convince me
of something a little bit crazy, which was pretty par for the
course for Patrick. He said, pretend I'm in a mid-life crisis,
in fact, he was 8 years old, and it was his mid life. Duchenne
Muscular Dystrophy is the most common lethal childhood genetic
disorder. It affects one in 3,500 males. There is a German
study that would change the incidence and prevalence of this
disease down to about one in every 2,500. This disease can be
inherited through X-linked recessive transmission within
families, although one third of this disease is spontaneous
mutation. That means every person here, every Member of
Congress, every member of this country and this world, is
subject to the risk of this disease.
Children who are born with DMD follow a predictable
clinical course. Young children develop difficulty walking and
begin falling due to muscle weakness, and by 8 to 10 years of
age the muscle weakness has progressed so that children often
are not walking. By late teens, most Duchenne children have
died from this disease, usually as victims of respiratory
failure. This rather clinical explanation does not clearly
reflect the disorder. The children with Duchenne Muscular
Dystrophy experience a lifetime of medical intervention. By the
age of 12, most boys have lost their ability to walk and for
the rest of their life will require the wheelchair. In an
effort to prevent spinal curvature and respiratory compromise
and bone loss, long-leg braces are utilized in combination with
hours in standers.
Hand in hand with loss of function is loss of independence.
The child will need help with ordinary things, lifting a fork,
rolling over in bed, hugging someone they love. By the age of
15, the breathing apparatus of these children completely fails
and is severely compromised. At that point, most children need
invasive ventilation.
Finally, young men with Duchenne Muscular Dystrophy are
often forgotten in that muscle is not just for moving bones,
muscle comprises our--smooth muscle comprises our digestive
tract, the heart is a muscle. These muscles fail, there is no
muscle that escapes degeneration in Duchenne Muscular
Dystrophy.
The diagnosis of Duchenne Muscular Dystrophy is accompanied
by a lifetime of progressive loss of function, loss of
independence, dependence on family and care givers. It's an
extraordinary physical, mental, psychological, spiritual and
financial burden to the families.
Finally, the loss of these boys, their absence diminishes
us as a society. This great country is less than what it should
be without these boys.
Before his death, my son Christopher said to me, ``If you
won't fight for me, who will?'' It is for this reason we
founded Parent Project Muscular Dystrophy. It is for this
reason that we began in 1997 efforts and advocacy, and I must
say it's a good day because the Muscular Dystrophy Association
has now joined our efforts and together as a community we can
see miracles for these boys.
Our advocacy program has now developed into a comprehensive
Federal advocacy program, and it's been a truly remarkable year
and a remarkable experience for Parent Project Muscular
Dystrophy to see Congress take such a proactive, leading
commitment to support the entire Muscular Dystrophy community
has been spellbinding. On Valentine's Day of this year, H.R.
717, the Duchenne Muscular Dystrophy Childhood Assistance
Research and Education Act, was introduced in the House of
Representatives by Representatives Wicker and Peterson, and now
today 304 co-sponsors. We are delighted.
As you know, this bill takes significant steps toward
increasing Federal research dollars to find a cure for Duchenne
and other forms of Muscular Dystrophy. Specifically, H.R. 717
has some key steps involved: increased coordination of
research: building upon Title 23 of the Children's Health Act,
H.R. 717 expands, intensifies, and coordinates research
activities related to muscular dystrophy by establishing the
Muscular Dystrophy Interagency Coordinating Committee. Centers
of Excellence: In order to ensure a focused research effort on
muscular dystrophy, H.R. 717 establishes up to three Centers of
Excellence at NIH to support and expand basic and clinical
research on various forms of muscular dystrophy. Centers of
Excellence at CDC: To begin to analyze existing data and
formulate linkages between the epidemiological aspects of this
disease--particularly the high incidence of genetic mutations--
with the research being conducted H.R. 717 also authorizes up
to three Centers of Excellence within the CDC. The National
Muscular Dystrophy Surveillance Program: The bill provides
grants to public and nonprofit entities for implementation of a
National Muscular Dystrophy Surveillance Program. And finally,
Dissemination of Education to Medical Professionals and
Promotion of Public Awareness: one of the profound problems in
Duchenne Muscular Dystrophy is the range of care across this
country and across the world. There is benign neglect to very
aggressive care, and at each individual center it varies. We
need to have consistent guidelines, standards of care. We need
to make sure we maximize and optimize the lives of these
children right now, as we push forward the emergence of
treatments.
Much to the delight of the Parent Project Muscular
Dystrophy and the entire muscular dystrophy community, the
Senate soon followed the House's lead by introducing a
consensus version of the House bill, S. 805. It was introduced
and now has 32 co-sponsors. We are so thankful for the support
of this Congress, and thankful that the face of this disease
will soon change forever.
[The prepared statement of Patricia Furlong follows:]
Prepared Statement of Patricia Furlong, President, Parent Project MD
On behalf of the Parent Project for Muscular Dystrophy Research,
Inc. (otherwise known as the Parent Project MD), I would like to
express the organization's sincere appreciation to Chairman Michael
Bilirakis, Ranking Member Sherrod Brown and Members of this Committee
for the opportunity to testify before you today.
I represent the Parent Project MD, a nonprofit voluntary health
organization comprised of parents and grandparents whose children have
been diagnosed with Duchenne muscular dystrophy or its milder form,
Becker muscular dystrophy. The Parent Project MD's mission is quite
simple and straightforward: To mobilize people in the USA and Worldwide
in collaborative efforts, enabling people with Duchenne and Becker
Muscular Dystrophy to survive, thrive and fully participate into adult
age. We wish to expedite treatment and a cure for this heartbreaking
muscle disorder by increasing support for research.
Mr. Chairman, today I am here to testify in support of legislation
introduced this year with respect to Duchenne Muscular Dystrophy. I'd
like to take a moment though and first reflect on some of my own
impressions of Duchenne and its impact on families. For years, families
have been smothered with public information stating that we are 'almost
there' or 'around the corner'. Answers are on the horizon -or are they?
Mr. Chairman, we are not there. Although emerging strategies leading to
treatment and therapy in the future are in the works, federal
investment in DMD research has been abysmal until only recently. We
have to commit adequate resources and support before the prognosis of
DMD will see significant change.
My commitment to the Duchenne muscular dystrophy community stems
from two convictions: first, from my experience as a mother of two
children who died from Duchenne; second, my role as founder and
President of the Parent Project Muscular Dystrophy. I have to be honest
here in saying that if given the choice, I would rather just be a
normal mom with two sons and two daughters, both of my sons being alive
still and healthy. Unfortunately, this was not the plan for my family.
On a sunny June day in 1984, my sons were diagnosed with Duchenne
muscular dystrophy. To this day, I recall the exact words: ``Mrs.
Furlong, your sons have Duchenne muscular dystrophy, you are therefore
a carrier, one or both of your daughters will perhaps be carriers. Your
marriage will fail and your daughters will suffer due to the amount of
care you will necessarily provide for your boys. Do you have any
questions?'' I wondered why the sun was still shining.
THE INJUSTICE OF DUCHENNE
It simply isn't fair to be bright, handsome, and full of potential.
To be well adjusted in a good family, having so much to give the world,
to be so loved and then to die so young. Worse, is to both see and feel
the life force deteriorate slowly, finally and completely--until there
is nothing left. Mr. Chairman, we live in a proactive, positive world,
though children with DMD are ultimately powerless.
The barriers to progress on this disease says little for us as a
society and as a nation--that due to a lack of significant resources,
clinical outcomes of this disorder are predictable and remain
unchanged. Boys die before reaching 20, before reaching adulthood,
before experiencing life. One day, long ago, my son Patrick was trying
to convince me about one of his crazy ideas and I recall smiling at his
comment ``Mom, pretend I am having a midlife crisis.[[ Sadly, age 8 was
midlife for Patrick--his argument was sound.
Duchenne Muscular Dystrophy (DMD) is the most common lethal
childhood genetic disorder in the world, affecting 1:2328 male newborns
worldwide (1997 German study). The disease can be inherited through X-
linked recessive transmission within families, or it may be caused by a
spontaneous mutation in individuals. In fact, one-third of Duchenne
cases are not inherited but are caused by a gene mutation. Children who
are born with DMD follow a predictable clinical course. Young children
develop difficulty walking and begin falling due to muscle weakness,
and by 8-10 years of age the muscle weakness has progressed to the
point where most children must rely on wheelchairs. By their late
teens, most DMD children have succumbed to their disease, usually as
victims of respiratory failure.
This rather clinical explanation does not clearly reflect the
disorder. Children with DMD experience a lifetime of medical
intervention. As toddlers, boys with DMD look quite normal. At
diagnosis--informed physicians refer to baseline studies, night
splints, AFO's and PT--an excessive barrage of medical lingo that will
soon become a second language for the family. As a mechanism to prevent
contractures of the Achilles tendon, hamstrings and ileotibial bands,
gait changes, lordosis, walking on their toes and finally loss of
ambulation, boys with DMD require aggressive physical therapy, ankle-
foot orthosis (AFO's), and long leg braces.
By the age of 12, most boys have lost their ability to walk and,
for the rest of their life, will require an electric wheelchair. In an
effort to prevent spinal curvature, respiratory compromise and bone
loss--long leg braces are utilized in combination with several hours of
upright posture in 'standers'. Hand in hand with loss of function is
loss of independence. The child will need help with ordinary things:
associated issues related to schooling, toileting, lifting a fork,
turning in bed.
By the age of 15, the breathing apparatus of these children is
severely compromised. When laying flat in bed, these children do not
have sufficient respiratory effort to exhale, blow off CO2; hence
mechanical (noninvasive) ventilation is instituted. They sleep with a
mask over the nose and mouth (BiPap ventilation), which provides forced
air into the lungs and therefore enhances their ability to exhale.
Finally, the young man with DMD will require invasive ventilation -
tracheotomy and ventilators due to extraordinary weakness of the
pulmonary apparatus. Often we forget that muscle encompasses much more
than moving bones--the heart is a muscle as is the digestive tract,
which is comprised of smooth muscle. No muscle escapes degeneration in
Duchenne. Children with Duchenne have cardiomegaly (enlarged heart),
decreased cardiac output and congestive heart failure in their late
teens. During the late teens or early 20's, young men with DMD are
unable to manage oral secretions, have difficulty with digestion and
require manual removal of stool.
The Diagnosis of DMD is accompanied by a lifetime of progressive
loss of function, loss of independence, dependence on family/caregivers
and extraordinary 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--what we miss as
parents, siblings, relatives, communities as a society is great. This
greatest country on earth is diminished by our irreverence for the
lives of these children.
PARENT PROJECT MD & ADVOCACY
Before his death, my son Christopher asked, ``if you will not fight
for me, than who will?'' I was devastated at this question, for one
feels completely defeated when they cannot help protect their own
child, instead having to simply watch the child suffer this long,
agonizing death. Parents from around the US, indeed the world, wanted
to advocate for their child, for this disease. Our children are not out
of their warranty period before they wear out, our children will never
have the adult status to advocate on their own behalf, our children's
degeneration sends ripples of pain and dysfunction through generations
of families. As a result, in 1994 a small group of parents founded
Parent Project Muscular Dystrophy, a national nonprofit dedicated to
expediting research and a cure for DMD/BMD.
In 1997, Parent Project MD members initiated its first advocacy
agenda. Initially, we wrote letters to representatives--please on
behalf of our sons. In 1999, the House Labor/HHS Appropriations
Subcommittee heard our testimony. Last year, the Senate Appropriations
Committee graciously included strong DMD report language in its
conference report, ensuring a greater commitment to coordination within
the National Institutes of Health. We were further blessed by the
efforts of your Committee last year when muscular dystrophy was granted
a separate Title in the Children's Health Act of 2000--the first time
in history there has been a federal mandate on Duchenne and other forms
of Muscular Dystrophy.
Our advocacy program has now developed into a comprehensive federal
advocacy program, and it has been a truly remarkable year for the
Parent Project Muscular Dystrophy, and for the entire muscular
dystrophy community as a whole. To see Congress take such a proactive,
leading commitment to supporting the entire muscular dystrophy
community has been completely spell-binding. On Valentine's Day of this
year, H.R. 717, the Duchenne Muscular Dystrophy Childhood Assistance,
Research and Education Act (commonly referred to as the DMD CARE Act),
was introduced in the House of Representatives by Representatives Roger
Wicker, Collin Peterson and 90 original co-sponsors. Today, this bill
boasts of 290 cosponsors, showing the tremendous support of the
Congress in increasing federal research efforts towards Duchenne
muscular dystrophy.
MERITS OF H.R. 717, THE DMD CARE ACT
As you know, this bill takes significant steps towards increasing
federal research efforts to find a cure for Duchenne and other forms of
muscular dystrophy. Specifically, H.R. 717 takes five key steps towards
improving the federal commitment to muscular dystrophy:
<bullet> Increased Coordination: Building upon Title 23 of the
Children's Health Act of 2000, H.R. 717 expands, intensifies,
and coordinates research activities related to muscular
dystrophy by establishing the Muscular Dystrophy Interagency
Coordinating Committee.
<bullet> Centers of Excellence at NIH: In order to ensure a focused
research effort on muscular dystrophy, H.R. 717 establishes up
to three Centers of Excellence at NIH to support and expand
basic and clinical research on various forms of muscular
dystrophy, including investigations into the diagnosis, early
detection, prevention, control, and adequate treatment of
various forms of muscular dystrophy.
<bullet> Centers of Excellence at CDC: To begin to analyze existing
data and formulate linkages between the epidemiological aspects
of this disease--particularly the high incidence of gene
mutations--with the research being conducted, H.R. 717 also
authorizes up to three Centers of Excellence in muscular
dystrophy epidemiology through the Centers of Disease Control
and Prevention (CDC).
<bullet> National Muscular Dystrophy Surveillance Program: The bill
provides grants to public or nonprofit private entities for the
implementation of a National Muscular Dystrophy Surveillance
Program.
<bullet> Dissemination of Education to Medical Professionals and
Promotion of Public Awareness: H.R. 717 establishes and
implements a program to provide information and education on
muscular dystrophy to health professionals and the general
public, including information and education on advances in the
diagnosis and treatment of muscular dystrophy and training and
continuing education through programs for scientists,
physicians, and other health professionals who provide care for
patients with muscular dystrophy.
CONCLUSION
Much to the delight of the Parent Project MD and the entire
muscular dystrophy community, the Senate soon followed the House's lead
by introducing a consensus version of the House bill. S. 805, the
Muscular Dystrophy CARE Act, was introduced in May and now has 30
cosponsors.
The enormous support this bill has generated in such a short amount
of time speaks volumes not only about the significant external support
of the legislation, but also to the integrity of our Congressional
leaders who have listened with open hearts and open minds to their
constituents and families of children with Duchenne muscular dystrophy.
Our earnest hope is that you never have to understand firsthand the
devastation of Duchenne muscular dystrophy. Your leadership in
addressing this important legislation reminds us that Congress does
care and Congress does act to ensure our national resources are
appropriately directed.
Respected Members of the Subcommittee, today, our battle is against
Duchenne and other forms of muscular dystrophy. My personal story is a
collective story about all the children diagnosed with Duchenne who,
and following their exposure to myriads of medical intervention, lose
all independence and finally their lives. Mr. Chairman, in this,
NOTHING has changed in the last 100 years, the story remains unchanged
and will remain so without increased investment in DMD research. In
this remarkable land of medical miracles, we should all hide our faces
in shame on that one statistic; let alone the harsh reality of this
progressive, heartbreaking degenerative process known as Duchenne.
We ask that you listen now to the voices of these young men, as
their voices will surely fade before they reach adulthood. We urge you
to provide this legislative direction for research that will
investigate the territory of this devastating disease and the weaponry
needed to win this war. Without your help, our children will continue
to have the same prognosis for another 100 years. Mr. Chairman and
distinguished members of the Committee, we are honored to appear before
you today, and grateful for this opportunity to testify.
Mr. Bilirakis. Thank you very much, Ms. Furlong. You do
your sons proud.
Our next witness is Mr. Ray Merenstein, who is the Vice
President for Programs of Research!America.
Mr. Merenstein, you are recognized to testify.
STATEMENT OF RAY MERENSTEIN
Mr. Merenstein. Thank you.
Mr. Chairman, distinguished members of the subcommittee, I
thank you for your leadership and tireless dedication to the
longevity, quality of life and health of your constituents. It
is with great honor that I testify before this subcommittee,
the very one chaired by another distinguished gentleman from
Florida, Paul Rogers, who is now Chair of Research!America.
I testify on behalf of Research!America, the Nation's
largest advocacy organization for the full spectrum of medical
and health research. We are a leader in the movement to double
funding for NIH, and ensure strong, sustainable support for its
sister health and science agencies.
One hat I wear is Director of the 435 project, a national
outreach campaign bringing research closer to home. There is a
story to be told in all 435 Congressional districts, as we just
heard, about the progress and promise of medical and health
research. The research enterprise is about access to answers,
not just answers to scientific hypotheses, but answers of
accountability that show the money is spent wisely, the science
is done justly, and results are producing constantly.
It is your vision as a subcommittee, and those who join the
co-sponsors of H.R. 1340, BRAVO, that should be commended. One
thing I've learned traveling the Nation listening to focus
groups and patient testimonials over the past decade, is that
no commitment can be too great if it saves even just one life
and reduces suffering. The return of the investment on research
in terms of economic impact and quality of life is a remarkable
one. So, while some questions of the fast growth of agencies
are aquarius to what's next after doubling may arise, there's a
three-part equation I offer to justify the funding: the will of
the people, the opportunity of science, and the reality of
politics. We must enhance the book of knowledge so that
discovery expands and delivery provides, and we must continue
authorizing novel ideas like the BRAVO Act.
As early as 1995, Research!America's polls asked the
following question: if you could check off a box on your
Federal income tax return to have some of your tax refund be
donated specifically for medical research, do you think you
would? In Florida, for example, 56 percent of those surveyed
answered affirmatively.
In 2000, just shy of 94 million people received refunds.
This translates, according to our polls, to 52.6 million
citizens willing to donate some of their refund. If every
person willing to donate just put in $1.00 of his or her refund
it would garner over $50 million in extra funding. Based on the
average size of an NIH grant, that is more than 160 new
research ideas. If ever there was a doubt that Americans are
willing to pay for more research out of their own pocket, just
look at the breast cancer stamp. The .40 cent stamp in its
first 9 months raised $6.6 million for breast cancer research.
But, what makes BRAVO even more appealing is it does not
specify any particular disease. So, if discoveries are made
researching one area, they might have benefits for another
area. The tax refund affords peer reviewed science the
opportunity to identify the greatest chance in science for
researchers, clinicians, fellowships, and trainees all across
America, which brings me to the opportunity in science.
Earlier this year, Lasker/Funding First partnered with JAMA
to give a spectacular glimpse into the crystal ball of a
healthier America. Lasker/Funding First also published
exceptional returns in economic study from economists on the
impact of medical and health research. Today's headline noting,
``Decreases in heart disease, cancer, AIDS, stroke,'' those are
the kind of cost impacts that allow us to put more money back
into research. A 17-year investment of just $56 million
produced a 91 percent cure rate for testicular cancer with a
return now annually of $166 million.
A new NIH report titled, ``Investments, Progress and
Plans,'' categorically points out the success stories of the
past few years in oral health, nursing, aging, childhood
illness, mental health, orphan diseases known to few, and
Alzheimer's, Parkinson's and others known to millions. The NIH
report also notes progress, controlling emergent infectious
diseases that I know the ranking minority member has a certain
championing for, building on the human genome, advancing
technologies, and understanding health disparities. In other
words, research saves lives and research saves money.
Despite such progress, we still only fund about two out of
every five meritorious grants. Training grants for clinicians
are too small and sometimes new scientists struggle to make a
career. This Nation must not warehouse solutions. BRAVO will
make a difference. Can we spend the money wisely? What will
happen after doubling? What about public health in the physical
sciences? Evidence is provided by the young boy or girl who is
a part of the 80 percent cure rate in childhood leukemia, the
elderly woman whose eyesight has been restored, the father who
has survived heart disease and the diabetic whose hope for a
cure is greater than ever. Last year should be the greatest of
all indicators of where there's a will there's a way, a
championed bipartisan agreement resulted in a 14 percent
increase for NIH, 13 percent for NSF, 31 for the Agency for
Health Care Research and Quality, 25 for CDC, and a 7 percent
increase for the VA Medical Research and Prosthetics budget.
The strides and success of yesteryear are the breakthroughs and
brain child of tomorrow. Those surveyed in our prevention
research initiative, Congress, media, public health
professionals, academic leaders, and perhaps most importantly
survivors, all expect a great deal of progress over the next 10
years in disease prevention and health promotion, and they,
too, support a tax checkoff to help fund this research, so much
that it's above the 70 percent level 5 to 6 years after we
began surveying on this.
To the chairman and members of the subcommittee, you truly
are, as this hearing is entitled, advancing the health of the
American people. The public is on your side and so is
scientific opportunity, and without question you have the
political will.
As Chairman Rogers said earlier this month when the plaza
in front of NIH, Building 1, was dedicated in his honor,
``Without research there is no hope.''
Thank you to the subcommittee and to all of your colleagues
for making hope all the greater.
[The prepared statement of Ray Merenstein follows:]
Prepared Statement of Ray Merenstein, Vice President, Programs,
Research!America
From the introduction of the National Cancer Act to the
reauthorization of the Agency for Healthcare Research and Quality, this
subcommittee has always been an outspoken personification of
Congressional commitment to the health of our nation's citizenry.
Chairman Bilirakis, and distinguished members of this subcommittee, I
thank you for your leadership and tireless dedication to the longevity,
quality of life and health of your constituents, your state, your
country, not to mention globally. It is with great honor that I testify
before this subcommittee, the very one that was once chaired by another
leader from the great state of Florida, and now chair of
Research!America, the Honorable Paul G. Rogers.
Today I am here to testify on behalf of Research!America, the
nation's largest unified advocacy voice for medical and health
research. Research!America is a recognized leader in the movement to
double funding for NIH by fiscal year 2003 while ensuring strong and
sustainable growth for its sister health and science agencies. Our
membership now represents more than 400 voluntary health agencies,
teaching hospitals, academic institutions, industries, philanthropies,
professional societies, state-based organizations and trade
associations.
My title is vice president of programs, but perhaps more
appropriate to today's hearing, I also serve as director of the 435
Project<SUP>'</SUP>--a national outreach campaign dedicated to bringing
research closer to home. There is a story to be told in all 435
Congressional district, hence the 435 Project<SUP>'</SUP>, about the
remarkable progress and the endless promise brought about by medical
and health research. After all, it is the taxpayer, the consumer, the
shareholder and the philanthropic donor that make research possible in
this country. The research enterprise is about access to answers--not
just answers to scientific hypotheses, but answers of accountability
that show the money is spent wisely, the science is done justly and the
results are producing constantly.
H.R. 1340
Chairman Bilirakis, it is your vision, and those who join you as
co-sponsors of H.R. 1340, the BRAVO (Biomedical Research Assistance
Voluntary Option) Act, that should be commended in particular. If there
is one thing I've learned traveling the nation for nearly a decade
listening to focus groups, patient testimonials, scientific projects
and economic impact as they relate to medical and health research, it
is that no commitment can be too large if the research leads to the end
of suffering for millions of Americans. Research does make a
difference.
Even with the movement to double the budget of the NIH, one for
which we owe gratitude to all of you on the subcommittee, there is
still less than a nickel of every health care dollar going to medical
research. That's why the work of your subcommittee is so important. It
continues to look at a health system--Medicaid and Medicare, research,
patient care and more--with a cost of over one trillion dollars. It is
your subcommittee that tries to figure out how to make that system more
effective in terms of quality and in terms of cost. As my testimony
covers later, you will find the return on the investment in research--
in terms of economic impact and quality of life--a remarkable one.
To those wondering if it is justified to find yet another funding
stream for NIH on top of the generous budget increases set forth the
past few years, the stories of survival from citizens across American
should cure such doubts. No other Federal investment can bring better
treatments, stronger cures and improved prevention of disease than
support of our national research agencies. So while some question the
fast growth of agencies or query as to what's next after doubling,
there is a tripartite equation I offer to justify the funding: the will
of the people, the opportunity of science and the reality of politics.
Each of these I will address, and each ends in a resounding indication
that ramped up investment in medical and health research is
economically, physically and politically the right thing to do.
If as a nation--whether legislators in the halls of Congress or
scientists in the labs of universities--we are to make a difference in
the people's health, this country must financially and scientifically
ensure that research enhance the book of knowledge so that discovery
expands and delivery provides. We must continue funding increases
through appropriations and we must continue authorizing novel ideas
like the ever successful breast cancer stamp or the visionary BRAVO
act. Such leadership will ensure more diseases are being prevented, new
scientists are being funded, more dollars are being saved, and more
ideas are being generated.
Public Opinion
When it comes to taxpayer-supported research, the public is on your
side. As early as 1996, Research!America in its statewide polls asked
the following question: ``If you could check off a box on your federal
income tax return to have some of your tax refund be donated
specifically for medical research do you think you definitely would,
probably would, probably would not or definitely would not consider
doing this.'' Fifty six percent of those surveyed answered
affirmatively.<SUP>1</SUP> This question was followed then by asking
those who would donate to tell how much they would donate. The answers
ranged from 15 percent of those favoring the idea willing to donate $5-
10 dollars and even 2 percent willing to apportion $100-500 of their
refund. Here's the difference that it would make. In 2000, just shy of
94 million people received refunds.<SUP>2</SUP> Based on the survey,
fifty six percent of those would donate meaning 52.6 million citizens.
Even if every person willing to donate gave only $1 of his or her
refund (far less than the median response on the survey), it would
garner over $50 million in extra funding for future treatments, cures
and preventions. Based on the average size of an NIH grant, this is
more than 160 new research ideas.<SUP>3</SUP>
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\1\ Research!America. Floridians Speak Out About Medical Research.
February 1996: Alexandria, VA
\2\ www.irs.gov
\3\ http://silk.nih.gov/public/cbz2zoz.@www.charts.avgr01.pdf
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The public's overwhelming support for research has been tested by
Research!America numerous ways. When people say they will put some of
their refund or some of their stamp money into research, they aren't
just responding in idealistic or altruistic fashion. They have hope,
they have expectation and they have belief in science. For example,
when Research!America has asked if the federal government should invest
in research even if it has no immediate benefit, more than 78 percent
answered yes. It is our nation's role to be a leader in medical and
health research. In fact, more than 86 percent of those surveyed say it
is important that the U.S. maintains its role as a world leader in
medical research.<SUP>4</SUP>
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\4\ http://www.researchamerica.org/opinions/
2000polls.generalversion.html
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If ever there was doubt that Americans would be willing to fund
more out of their pockets for research--beyond what they already
support--just look again at the breast cancer stamp. In the first nine
months of the special 40-cent stamp, $6.6 million was raised for breast
cancer research. Demand was so high and people's willingness to pay
more for research so great, that an initial second printing of the
stamps had to be completed. Does it make a difference? Certainly. In
1999 the FDA approved 15 treatments for cancer and cancer pain alone.
What makes BRAVO even more appealing, is it does not specify any
one disease toward which the money should be directed. The tax refund
as a complementary funding source--and I note complementary, as it
should not supplant the necessary increase in funding from
appropriations--will afford the peer-reviewed science to identify the
greatest opportunities and to fund researchers, clinicians, fellowships
and trainees all across America. More funding will also play a key role
in sustaining the growth of opportunity. For with the review,
implementation and evaluation of every idea comes the need for strong
management, administrative and infrastructure support. Opportunity must
be met, and it must be managed. Additional funding will help fulfill
the opportunities. Which brings me to the second area of accountability
for medical and health research: the opportunity in science.
The Opportunity of Science
Recently Lasker/Funding First commissioned a series of papers
published earlier this year in the Journal of the American Medical
Association. The papers provide a spectacular glimpse into the crystal
ball of a healthier America. Alzheimer's disease and osteoporosis are
strong candidates for disease prevention. It should be noted that a
five-year delay in the onset of Alzheimer's can save more than $50
billion annually.<SUP>5</SUP> Chronic diseases such as Parkinson's and
arthritis will be brought under control even more than they are today.
According to a study by Ken Manton out of Duke University, there is
evidence that research has led to a decline in disability rates of
elderly, thereby saving a tremendous toll on the healthcare costs of
tomorrow.<SUP>6</SUP> As Katie Couric said in receiving an advocacy
award from Research!America, many cancers will be read about in history
books rather than text books. Already a 91 percent cure rate of
testicular cancer, based on an investment of just $56 million over 17
years is more than paying for the research with a return of $166
million in annual savings.<SUP>7</SUP> Such savings in cancer and other
disease is reiterated by studies from economists compiled by Lasker/
Funding First.<SUP>8</SUP>
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\5\ Alliance for Aging Research, ``Putting Aging on Hold: Delaying
the Diseases of Old Age''. Washington, DC
\6\ Manton, K., et al, Proceedings of the National Academy of
Sciences, Vol. 94, pp. 2593-2598, March 1997.
\7\ http://www.aamc.org/adhocgp
\8\ http://www.laskerfoundation.org/reports/pdf/exceptional.pdf
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I want to point out a recent compilation of success and promise
that NIH has put together to highlight the impact of the dramatic rise
in funding. Just recently they issued ``Investments, Progress and
Plans: Selected examples from FY 1999-2003.'' <SUP>9</SUP> This
categorically points out the amazing success stories of just the past
few years in oral health research, nursing research, research into
aging and research into childhood illness, research in mental health,
research in orphan diseases known to few, and research in AIDS, cancer,
heart disease and stroke known to millions. Perhaps more pertinent is
the NIH report also notates the potential for progress. Controlling re-
emerging infectious disease like tuberculosis--a disease I know ranking
member Brown continues to target, is within our grasp. The human genome
has provided us with a set of keys and a series of doors that lead to
new treatments and even cures for cystic fibrosis, heart disease and so
much more. Advanced technologies depend on ever-increasing funds in
order to catalyze partnerships with NSF, DOD and DOE. New understanding
of health disparities have us on the verge of translating the discovery
of NIH to the delivery of CDC and the quality and cost control of AHRQ
for those populations most in need. In other words, research saves
lives and research saves money.
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\9\ http://www.nih.gov/about/investments.htm
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Hence, BRAVO and other innovative ways to sustain strong funding
for NIH--and its sister agencies--are vital. The promise of research
doesn't draw to a close in fiscal year 2003 when we all hope the NIH
``double in five'' movement has been accomplished. Science has made
dramatic progress as I've noted before, but the yellow brick road it's
paving has some curves to still negotiate and some hills to climb.
Today, despite funding increases, our nation still only supports less
than two out of every five meritorious research ideas. Training grants
for clinicians to study research--physician, dental and nursing
researchers--are too small to serve as an incentive and thus this
nation risks a decreasing research workforce. Young scientists still
sometimes struggle to make a career in research for fear that a project
might not get funded. Increased funding is making a difference. A 65
percent increase in funding for first time NIH-funded scientists
occurred between 1995 and 1999; success rates for young scientists
submitting ideas grew from one in seven, to one in four, over the same
period. But this still means the majority aren't getting funded. Too
many ideas are out there becoming lost opportunities. This nation must
not warehouse solutions. Supplemental funds from ideas like BRAVO will
make a difference.
The Reality of Politics
With the great growth of NIH have come a series of questions. Can
the money be spent wisely? What will happen after doubling? What about
public health and the physical sciences? These are all questions that
ought to be asked, and they are all questions with answers that ought
to be heard. The money, as NIH's new report shows, is being spent
wisely. But even more evidence is provided by the young boy or girl who
is a part of the eighty percent cure rate in childhood leukemia, the
elderly woman or man whose eyesight has been restored as a result of
new technology and greater understanding of the function of vision, the
mother or father who survived heart disease because of progress in
bypass surgery or success of automatic defibrillators, the diabetic
whose hope for a cure is greater than ever because of potential with
stem cells, islet cells and other new knowledge gleaned from research.
This is the proof that increased funding does make a difference.
As to what will happen after doubling, I urge all of you to
recognize that even in times of certain budget cuts, scientific
opportunity should become political reality. It was less than a decade
ago when science agencies were going to be slashed by 20-25%, but the
leadership of those like Senator Mark Hatfield, the Appropriations
chair at the time, carved out near double digit increases for NIH
because the science warranted such a funding level. And last year
should be the greatest of all indicators of the ``where there's a will
there's a way'' adage. A bipartisan agreement resulted in a 14 percent
increase for NIH and a 13 percent rise for NSF, a 31 percent increase
for AHRQ, a 25 percent increase for CDC and a 7 percent increase for
the VA research and prosthetics research budget.
Research!America recently polled survivors of preventable diseases
on a national scale as part of our prevention research initiative. To
no surprise, survivors are very supportive of research. Yet even though
their survival is testament to research's progress, 85 percent still
feel preventable diseases and injuries in this country are a major
health problem. Meanwhile more than 65 Members of Congress and senior
staff polled at the same time confirmed the same with 95 percent citing
it as a major health problem.<SUP>10</SUP> The strides and success of
yesteryear, lead to the brainchilds and breakthroughs of tomorrow. From
basic research to behavioral science, more can and will be done if
supported at the level of the public's desire and of science's
capability. This is why majorities of all those surveyed--Congress,
media, public health professionals, academic leaders, survivors and the
general public--expect a great deal of progress to be made in health
promotion and disease prevention research in the next 10 years. With
continued growth in support for NIH, alongside AHRQ, CDC, NSF, VA and
others, this expectation will become reality.
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\10\ http://www.researchamerica.org/programs/pri/roper.html
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Chairman Bilirakis and members of the subcommittee, you truly are,
as this hearing says, ``Advancing the Health of the American People and
Addressing Various Public Health Needs.'' Feel good about what you're
doing. The public is on your side and so is scientific opportunity and
political will. As Chairman Paul Rogers says often and said earlier
this month when the plaza outside building one at NIH was dedicated in
his honor, ``Without research there is no hope.'' Thank you for making
hope all the greater and better health all the likelier.
If you could donate some of your tax refund specifically for medical
research, do you think you would?
(Percent saying would consider)
------------------------------------------------------------------------
%
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Alaska (1997)................................................... 56
Oklahoma (1997)................................................. 55
Pennsylvania (1997)............................................. 56
Wisconsin (1997)................................................ 54
California (1996)............................................... 59
Florida (1996).................................................. 56
Texas (1996).................................................... 51
National (1995)................................................. 60
Kentucky (1994)................................................. 61
Virginia (1994)................................................. 75
------------------------------------------------------------------------
Source: Research!America
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Mr. Bilirakis. Thank you, Mr. Merenstein, for your
testimony. We appreciate it.
Next, we'll turn to Mr. Charles W. Blackwell, who is the
Chickasaw Nation Ambassador to the United States. We are
pleased to have you here, Mr. Blackwell, and you are recognized
to testify.
STATEMENT OF CHARLES W. BLACKWELL
Mr. Blackwell. Thank you, Mr. Chairman and members of the
committee. It is an honor, a little bit of an overwhelming
honor, to be here as one voice, and I want to make it clear,
I'm only one Indian among the almost 2 million in the country
who are, I would say to the person supportive of H.R. 293, the
reasons are outlined in my written testimony which I submit in
revised form for the record, and without repeating that I will
tell you that my honor in doing this began on July 30, 1942
when I was born in an Indian hospital, Concho Indian Hospital
in western Oklahoma, and it continues to this day, not only as
a teacher and a lawyer, but now as a tribal diplomat, but more
importantly for my own family.
In my family, from the day I was born, we have dealt with
the ravages of diabetes, from my grandfather, to now my
granddaughter, and while there is little rhyme or reason for
that, as a spokesman for the American Indian community and for
my family here today, we are willing to do what is necessary
for ourselves to overcome the ravages of this disease.
Last Friday, when I received the invitation to testify
before you today, I was reminded of another invitation I
received about 4 years ago, a call from the White House to
serve on the President's Advisory Council on HIV-AIDS. I served
on that, and whenever the call came from the White House I told
the young man who asked me, I said, ``I appreciate the honor,
like Abraham Lincoln, and if it weren't for the honor,'' but I
said, ``my issue in health for Indian country, for Native
American people is diabetes.'' And, he said, ``Ambassador
Blackwell, the President does not have an advisory council on
diabetes.'' I said, ``I accept the honor, and he should have.''
And, I suppose that's my message today, I accept the honor
for being here, and we should have an assistant secretary. I'm
sorry that Mr. Pallone is not here to hear me voice my support
and the support of Governor Anoatubby of my tribe, the 264
tribes who are members of the Self-Governance Coalition within
Indian Health Service, but it's time that we have an advocate
and a voice at the highest policymaking level to advocate for
us on budget, on policy, on the issues that are significant.
These are human issues to us.
On the Goshute Reservation in Nevada, I have been asked to
help them, 82 percent of their tribal population on the
reservation has diabetes. They are 250 miles from the closest
medical facility, and Mr. Tauzin should know that fewer than 10
percent of the homes on the reservation have telephones. That's
a formula for disaster, and it is disastrous, but that's only
one throughout all of Indian country.
Thank you and I will appreciate expeditious attention and
treatment, passage of H.R. 293. I appreciate Mr. Pallone's
insight and support, and Mr. Nethercutt's, and others of you
who have taken a particular and special interest in American
Indian health issues. We are not a disease, we are a people, to
whom you have a very strong trust responsibility.
Thank you.
[The prepared statement of Charles Blackwell follows:]
Prepared Statement of Charles W. Blackwell, Chickasaw Nation,
Ambassador to the United States of America, Director of Pushmataha
House
Thank you Mister Chairman and members of the committee for the
opportunity to appear before you today. My name is Charles W.
Blackwell. I bring you the greetings of my Governor, Bill Anoatubby. I
am the Chickasaw Nation Ambassador to the United States of America and
the director of Pushmataha House on Capitol Hill. I appear before you
today in my capacity, first, as the Chickasaw Nation Ambassador to the
United States of America, second, as the director of Pushmataha House,
and third, as a life-long consumer of PHS and IHS services.
As an enrolled Chickasaw who is also Choctaw, I have direct and
personal knowledge of the Indian Health Service and of Indian health
facilities throughout Indian Country. I was born in Concho Indian
hospital; my oldest son was born in Fort Defiance Indian Hospital.
Throughout my life, I have paid regular and emergency visits to Indian
hospitals in Alaska, New Mexico, Arizona, California, and Oklahoma.
Obviously I trust the system. Even now I go to my tribal home to avail
myself of the services of Carl Albert Indian Health Facility in Ada,
Oklahoma.
As I have toured Indian health facilities from Alaska to Florida, I
have gained insight and formed definite opinions about the Indian
Health Service. I know there is wide disparity in the services based on
the allocations, for example. I have served four years on the
President's Advisory Council on HIV/AIDS and I know there are health
dangers left unaddressed. I am also currently building my storehouse of
knowledge on diabetes in the American Indian community because too many
of my people suffer with it. In all these capacities, but most
especially in my capacity as an American Indian father and grandfather
who has lived and worked in Washington, D.C. for nearly 20 years, I
believe there is every compelling reason to establish the office of
Assistant Secretary for Indian Health. The people, my brother and
sister American Indians and Alaska natives, must be personalized in
this process.
The establishment of the office of Assistant Secretary Indian
Health will:
<bullet> Create input at the policy making level, providing an
opportunity for direct representation and direct communication
between the Indian Health Service, the Department of Health and
Human Services, the Congress, and the White House.
<bullet> Assist a system that obviously needs attention in providing
more effective and more sufficient health care to American
Indians and Alaska natives.
<bullet> Fulfill the trust relationship and the government-to-
government relationship between the federal government and
Indian tribes by recognizing the federal obligation to provide
health care for members of federally recognized tribes.
Because of its current posture, the Indian Health Service has not
had the appropriate opportunity to represent itself at the policy-
making level. Rockville is out of the loop. The gap in communication
and representation between the Indian Health Service Director and the
Secretary of the Department of Health and Human Services creates an
inefficient communication process through which Indian health
priorities are often lost. Consequently, the Indian Health Service has
been constrained from fulfilling its obligation to providing effective
health service to American Indians and Alaska Natives.
From the policy making level to the people at home on the
reservations and in their villages, American Indians have health
problems at rates disproportionate to other Americans. We have a
genetic commonality in our predisposition to diabetes, for example.
Life in my immediate family has served to remind me that the disease is
something we all live with on a daily basis. Disparities in health care
also exist in infant mortality, alcoholism, HIV/AIDS and other sexually
transmitted diseases, suicide, accidents, abuse, and teen pregnancy.
The current posture of the position of the Indian Health Service
director is an impediment to having the Indian Health Service deal
effectively with these disparities in health in Indian Country,
effectively representing tribal concerns, and from securing adequate
funds for programs, services, buildings, equipment, and updated
technology.
The trust relationship and the government-to-government
relationship between the federal government and Indian tribes
establishes the foundation for the existence of the Indian Health
Service as fulfillment of the federal obligation to provide health care
for members of federally recognized tribes. Self-governance incentives
have allowed tribes to administer Indian Health Service programs and
services for themselves, yet still the system fails to function at its
full capability because of severe fiscal limitations. The establishment
of an office of Assistant Secretary for Indian Health seems logically
necessary for the Indian Health Service to streamline its service and
purpose; to have a better opportunity for increasing funds; and to
force itself to evolve into an agency capable of competent fulfillment
of the federal government's commitment to the superior health care of
Indian people.
The elevation of the position of Director of the Indian Health
Service to the secretarial level should be used as an opportunity to
alleviate the confusion between policies of self-determination and
self-governance insofar as they impact Indian health. Section 1(b)
should be carefully scrutinized to afford the maximum input in policy,
budget, and service. In keeping with the subject of the hearing, we do
not want to isolate or exclude Alaska Natives; perhaps it should be
Assistant Secretary for Native American health. I would also like to
suggest a series of oversight hearings and the Chickasaw Nation would
volunteer to contribute in the examination of budget, policies,
services, and true conditions of health for all of America's first
citizens.
As surely as I, as a Chickasaw, do not accept ignorance,
unemployment, poverty, depression, and cultural isolation as conditions
for my People, no longer can all Native American People accept a
second-rate policy posture which physically inhibits us from
formulating the policies and priorities affecting our health. It is
timely and appropriate for Congress to establish the Office of
Assistant Secretary for Indian Health not just for the good of the
bureaucracy; but for the good of the People. Thank you.
Mr. Bilirakis. Thank you, Mr. Blackwell, thank you very
much.
Mr. David Gremillion, member of Board of Directors of Men's
Health Network, please proceed, sir.
STATEMENT OF DAVID H. GREMILLION
Mr. Gremillion. Good afternoon, Mr. Chairman and members of
the committee. I'm David Gremillion, a Professor at the
University of North Carolina School of Medicine, and a member
of the Board of Directors of the Men's Health Network. I'm here
today to support the Men's Health Act of 2001.
Before I assumed my current post at the University of North
Carolina, I was a Colonel in the Air Force Medical Corps and
President of the Society of Air Force Physicians, and in that
capacity I began to observe that, in fact, men receiving good
health screening and preventive behaviors had enhanced
lifestyles. As I left the Air Force Medical Corps, I joined the
Men's Health Network and began to promote healthy lifestyles
among men.
In addition, I'm motivated by being the father of a 19 year
old son, who I hope grows up in a world that values and
promotes healthy behaviors and lifestyles for men.
Men's health is often narrowly defined as prostate cancer
and erectile dysfunction, but focusing too narrowly on these
two issues, as important as they are, unfortunately misses a
key point for men's health. Men are notorious for their
avoidance of health care. As a result, they lead in each of the
ten categories, leading categories of death in America, and
have an average life span of 5.7 years less than their female
counterparts. Simply stated, males of America live sicker and
die younger than their counterpart females. This dismal
statistic applies across the life span and across the
diagnostic spectrum. In fact, for African American males, the
survival gap is 12 years.
The marked disparity in survival for American males is a
relatively new phenomenon. In 1920, women lived on average 1
year longer than their male counterparts. By 1993, that
survival gap had grown to a 7-year deficit. This results
partly, partly, from improvement in maternal survival and
increased health screening for women in the current health care
system, but cultural factors and other social factors underlie
this deadly statistic as well. Men are socialized to ignore
discomfort as a sign of weakness, and as a result signs of
illness are ignored and presented at a later clinical and less
manageable stage of their condition.
Thus, the social pressure that a young male feels when they
are young to ignore the bruises and pains of life translate
into decreased survival at middle age, when they begin to
ignore early signs of significant disease, like chest pain.
Men, thus, have an overall age-adjusted mortality of 1.6 times
greater than that of their female counterparts.
The silent crisis in men's health and the well-being of
American males is partly due to a lack of awareness or
education and a paucity of male-specific health programs. While
this crisis is of particular concern to men, it also is a
concern for women, regarding their fathers, their husbands,
their sons, and their brothers. Men's health is a concern for
employers who pay the cost of medical care and lose productive
employees. Men's health is a concern for Federal and State
governments that absorb the enormous costs left behind by the
premature death and disability, including the costs of caring
for dependents left behind.
This year, 198,100 men will be diagnosed with prostate
cancer, of which 31,500 will die. Prostate cancer increases
sharply with age, and more than 75 percent of such cases are
diagnosed in men age 65 and older. The incidence of prostate
cancer and the resulting mortality among African American men
is twice that among others. In spite of these dismal
statistics, prostate cancer continues to receive limited
funding for research, screening and interventions, compared to
breast cancer. Prostate cancer makes up 37 percent of all
cancer cases, and yet receives only 5 percent of research
funding.
In 2000, cancer research expenditures for breast cancer
were $424 million, for prostate cancer $190 million. The
disparity in this funding level results, at least partly, from
a lack of advocacy and focus at the national level. The Office
of Women's Health was established in 1991 to serve as a focal
point for women's health diseases and resulted in dramatic
improvement in organization, research, and improved funding for
breast cancer. Our current level of knowledge and concern about
the health status of men has matured, so that we now believe it
is timely to establish a similar focal point for men's health.
There is an urgent need for the Office of Men's Health and
improved prostate cancer funding.
Your act, the Men's Health Act of 2001, has now 74
committed co-sponsors, a number which will surely grow over the
next few weeks. This support is a testimonial to the widespread
recognition of the need for an increased awareness of issues,
programs and investigations affecting men and the quality of
their life. This is not just a bill for men, but a bill for
those who employ them, those who depend on their productivity,
and those who depend on their companionship, mentoring and
their partnership in life.
It has been a pleasure to testify before this group, and I
thank the committee for their focus on men's health issues.
Thank you.
[The prepared statement of David H. Gremillion follows:]
Prepared Statement of David H. Gremillion, Department of Internal
Medicine, Infectious Diseases, University of North Carolina at Chapel
Hill
Good Afternoon Mr. Chairman and members of the Committee. I am
David H. Gremillion, MD, and a professor at The University of North
Carolina School of Medicine at Chapel Hill. I am commenting today on
behalf of HR 632, ``Men's Health Act of 2001.''
Before I assumed my current post at UNC Chapel Hill, I was Colonel,
USAF Medical Corps and Consultant to the USAF Surgeon General for
Infectious Diseases, and President, Society of Air Force Physicians. My
current roles involve teaching and investigations in developmental
therapeutics for bacterial infections and HIV disease. I also maintain
an active clinical practice of Internal Medicine and Infectious
Diseases. I am President Elect of the Wake County Medical Society, and
vice-counselor 6th District, AMA. When I left active service with the
USAF, I joined the Men's Health Network, and for the past 3 years, I
have served as a member of the Board of Directors.
My interest in Men's Health derives partly from my earlier
experience as a Military Medical officer with its structured health
maintenance for personnel and the contrasting experience upon entering
the civilian world. While in the military, I observed a medical system
that promoted and even required health screening, maintenance and
prompt clinical care among personnel. My experience in civilian
medicine is quite the opposite, with few guidelines, incentives or even
interest in health promotion among males. At a personal level I am
motivated as the father of a 19-year-old son who wishes to see him grow
up in a world that promotes health and healthy lifestyles in males.
Males Live Sicker And Die Younger
``Men's Health'' is often narrowly defined as erectile dysfunction,
prostate disease and prostate cancer. While these conditions are
important, focusing on them exclusively diverts attention from the
broader issue of the overall poor status of Men's health.
Men are notorious for their avoidance of health care. As a result
they lead in each of the 10 leading causes of death in America and have
a life span of 5.7 years shorter than their female counterparts.\1\
Simply stated, males live sicker and die younger than females. This
dismal statistic applies across the life span and for every ethnic
group. The consequences for men and their quality of life as well as
for families, dependent children, spouses and even the economy are
substantial. When men do present to the healthcare system, it is often
on an occasion of trauma, injury, or clinical crisis rather than
routine health maintenance and screening. Consequently, their care is
delayed, expensive, and less effective, and may leave them with a
negative impression because of the urgency with which these crisis
interventions are conducted.
---------------------------------------------------------------------------
\1\ Murphy, SL, Deaths: Final Data for 1998, Division of Vital
Statistics, Centers for Disease Control, National Vital Statistics
Report, Volume 48, Number 11 July 24, 2000
---------------------------------------------------------------------------
Reduced Male Longevity
The marked disparity in longevity of men and women is a relatively
recent phenomenon. Women have lived longer than men since death
registration was started in 1900. In 1920 women lived on average 1 year
longer than men. By 1993 the average longevity of white females was
78.8 years compared to 72.2 for males. By 1998 male longevity had
improved to 74.5 years but still trailed females by 5.7 years. For
African-American males, life expectancy at birth is 65 years, 12 years
less than their white female counterparts. This disparity results
partly from improved maternal survival and better access to routine and
preventive care for women. But the issue is far more complex. Looking
beyond the obvious we find that social and cultural factors as well as
structural aspects of the health care system underlie this deadly
statistic.
The ``Silent Crisis'' in Men's Health
Men are socialized to ignore discomfort as a ``sign of weakness''
and as a result early signs of clinical illness are ignored and present
at a later and less manageable stage. Thus the social pressure males
experience as a child to ignore the bruises and pain of life becomes
life threatening at later stages of their life as they ignore chest
pain or other early warning signs of disease. Consequently, men have an
overall age-adjusted mortality 1.6 times greater than that of females.
This applies across the diagnostic spectrum including heart disease,
cancer, and chronic liver disease among others. Males carry a higher
burden of chronic disease throughout their lives and not surprisingly
have a higher death rate for each category. (See Table3). The
Commonwealth Fund \2\ reported that men are ``out of touch'' with the
health care system. Twenty-four percent of men did not see a physician
during the prior year compared to only 8 % of women. Men frequently
(33%) did not have a regular doctor compared to 19% of women. Men's
irregular contact with doctors and their reluctance to seek health care
place their health at risk. One in four men would wait ``as long as
possible'' before seeking attention for a serious medical problem.
---------------------------------------------------------------------------
\2\ Sandman, D, Simantov, E, An, C; Out of Touch: American Men and
the Health Care System. Commonwealth Fund Men's and Women's Health
Survey Findings. March 2000. www.cmwf.org
---------------------------------------------------------------------------
The silent crisis in the health and well being of American men is
partly due to a lack of awareness, poor health education, and a paucity
of male-specific health programs. While this health crisis is of
particular concern to men, it is also a concern for women regarding
their fathers, husbands, sons, and brothers. Men's health is a concern
for employers who pay the costs of medical care, and lose productive
employees. Males are 12 times more likely to die from an injury at work
than females.\3\ For 1993 male death before age 65 resulted in a
cumulative loss of 20,635 years of potential workplace productivity
compared to 10,400 years for women.\4\ Men's health is a concern to
Federal and State governments that absorb the enormous costs of
premature death and disability, including the costs of caring for
dependents left behind.
---------------------------------------------------------------------------
\3\ Murphy, SL, Deaths: Final Data for 1998, Division of Vital
Statistics, Centers for Disease Control, National Vital Statistics
Report, Volume 48, Number 11 July 24, 2000
\4\ Centers for Disease Control and Prevention, National Center for
Health Statistics
---------------------------------------------------------------------------
Violence as a Cause of Morbidity and Mortality in Men
Men are risk takers and aggressive by nature so not surprisingly,
violence is a major cause of mortality. Males have a 2.4 fold higher
mortality due to accidents. Males account for the vast majority of
murder victims. Suicide is 4 times more common in men and for those
over age 85 men hold an 11:1 edge. For veterans and divorced men the
risk is higher yet. Thoreau observed that ``the mass of men lead lives
of quiet desperation.'' Their sadness is ``masked'' and hidden by the
same forces that would not allow them as young boys to acknowledge
their physical pain for fear of appearing ``unmanly''.
Prostate Cancer as an Urgent Issue
This year 198,100 men will be newly diagnosed with prostate cancer
of which 31,500 will die.\5\ Prostate cancer rates increase sharply
with age, and more than 75 percent of such cases are diagnosed in men
age 65 and older. The incidence of prostate cancer and the resulting
mortality rate in African American men is twice that in white men. In
spite of these dismal statistics prostate cancer continues to receive
limited funding for research, screening and interventions compared to
breast cancer. Prostate Cancer makes up 37% of all cancer cases yet
receives only 5% of research funding.\6\
---------------------------------------------------------------------------
\5\ CA Cancer J Clin 2001;51:23. American Cancer Society
\6\ Source--National Prostate Cancer Coalition, (NPCC)
Expenditures for Cancer Research by the National Cancer Institute in
the Year 2000 \7\ Breast Cancer: $424,900,000; Prostate Cancer:
$190,000,000
---------------------------------------------------------------------------
\7\ Ibid.
---------------------------------------------------------------------------
Expenditures for outreach and screening at CDC (2000): Breast and
Cervical Cancer program: <plus-minus>$185,000,000; Prostate Cancer
program (no screening): <plus-minus>$11,000,000
This disparity in funding results at least partly from a lack of
advocacy and focus at the national level. The Office of Women's health
was established in 1991 to improve awareness and funding for women's
health issues with dramatic effect. This office and the Office of
Research on Women's Health (ORWH) have helped to improve the quality of
life for hundreds of thousands of women. Our level of knowledge and
concern about the health status of men has matured so that we now
believe that it is timely to establish a similar focal point for Men's
Health. There is an urgent need for an Office on Men's Health to
develop strategies, coordinate research activities, recommend public
policies, engage in public-private partnerships, and take other actions
that will encourage men to engage in healthy lifestyles, promote
awareness of and early detection of diseases that adversely affect men,
and search for answers to the perplexing problem of the deteriorating
longevity and overall condition of men's health. A recent Institute of
Medicine report,\8\ Sex Affects Health, draws attention to the dramatic
differences in biology, disease and treatment implication between the
sexes and recommends more emphasis on these fundamental observations in
future investigations; further justification for an Office of Men's
Health.
---------------------------------------------------------------------------
\8\ Exploring The Biological Contributions To Human Health: Does
Sex Matter? Institute of Medicine Report. April 24, 2001.
---------------------------------------------------------------------------
The Men's Health Act of 2001 now has 74 committed co-sponsors, a
number which will surely grow in the weeks to come. This support is a
testimonial to the widespread recognition of the need for an increased
awareness of issues, programs and investigations affecting Men's health
and their quality of life. This is not just a bill for men but for
those who employ them, and those who depend on their productivity,
companionship, mentoring and partnership in life.
The Office of Men's Health is urgently needed to slow the
progressive deterioration in men's health and longevity. I urge this
committee to pass HR632 and authorize the Men's Health Act of 2001 as
expediently as possible.
It has been a pleasure to participate today with others concerned
about the health status of American males. I would like to thank
Representative Cunningham for his leadership on health issues and his
concern about the health of men. I would also like to thank the
Committee for creating this forum and for bringing us together to
discuss these important issues. I would be pleased to answer any
questions you might have. Thank you.
Addendum: Tables and References
Table 1. Life expectancy at birth \9\
------------------------------------------------------------------------
Year Women Men
------------------------------------------------------------------------
1940................................................ 65.2 60.8
1950................................................ 71.1 65.6
1960................................................ 73.1 66.6
1970................................................ 74.7 67.1
1971................................................ 75.0 67.4
1972................................................ 75.1 67.4
1973................................................ 75.3 67.6
1974................................................ 75.9 68.2
1975................................................ 76.6 68.8
1976................................................ 76.8 69.1
1977................................................ 77.2 69.5
1978................................................ 77.3 69.6
1979................................................ 77.8 70.0
1980................................................ 77.4 70.0
1981................................................ 77.8 70.4
1982................................................ 78.1 70.8
1983................................................ 78.1 71.0
1984................................................ 78.2 71.1
1985................................................ 78.2 71.1
1986................................................ 78.2 71.2
1987................................................ 78.3 71.4
1988................................................ 78.3 71.4
1989................................................ 78.5 71.7
1990................................................ 78.8 71.8
1991................................................ 78.9 72.0
1992................................................ 79.1 72.3
1993................................................ 78.8 72.2
1998................................................ 80.0 74.5
------------------------------------------------------------------------
Between 1940 and 1970 the difference in life expectancy at birth between
women and men increased from 4.4 to 7.6 years. After remaining stable
in the 1970's the difference in life expectancy between women and men
decreased. In 1993 life expectancy at birth was 78.8 years for women,
6.6 years longer than for men. As of 1998, preliminary figures suggest
this gap has narrowed further to 5.7 years.
\9\ National Center for Health Statistics Health, United States, 1995.
Hyattsville, Maryland: Public Health Service. 1996. Library of
Congress Catalog Number 76-641496 U.S. Government Printing Office,
Washington, DC 20402
Table 2. Death Rates for selected ages and Causes of Death
------------------------------------------------------------------------
Cause of death Women Men
------------------------------------------------------------------------
Death rates for selected causes of death among persons
24-45 years
Unintentional injuries................................ 15.0 51.2
Heart disease......................................... 11.4 29.0
HIV/AIDS.............................................. 9.1 57.0
Homicide.............................................. 6.4 22.3
Death rates for selected causes of death among persons
45-64 years
Cancer................................................ 240.1 298.7
Heart disease......................................... 120.7 308.2
Stroke................................................ 26.2 33.3
Chronic obstructive Pulmonary disease................. 23.6 29.7
Diabetes.............................................. 20.4 23.8
Death rates for selected causes of death among persons
65-74 years
Cancer................................................ 688.4 1,113.3
Heart disease......................................... 589.3 1,175.3
Chronic obstructive Pulmonary disease................. 135.6 208.4
Stroke................................................ 118.7 157.4
Diabetes.............................................. 76.6 85.1
------------------------------------------------------------------------
Table 3. Chronic Diseases and Their Risk Factors: The Nation's Leading Causes of Death \10\
----------------------------------------------------------------------------------------------------------------
US Totals Male Female
-----------------------------------------------------------
Number Rate* Number Rate* Number Rate*
----------------------------------------------------------------------------------------------------------------
Ischemic Heart Disease.............................. 476,093 131.0 242,016 174.6 234,077 97.5
Cardiovascular Diseases............................. 954,313 260.2 450,701 324.2 503,612 210.0
Stroke.............................................. 159,931 42.0 62,471 44.4 97,460 39.9
All Cancers......................................... 539,508 167.2 281,883 206.9 257,625 139.6
Lung Cancer......................................... 151,902 48.8 91,554 68.1 60,348 34.3
Colorectal Cancer................................... 56,754 16.9 27,989 20.5 28,765 14.2
Diabetes............................................ 61,766 18.5 27,646 20.1 34,120 17.2
No Health Care Coverage............................. 16.8% 17.7% 16.0%
----------------------------------------------------------------------------------------------------------------
*Number per 100,000 population
Adapted from Centers for Disease Control and Prevention data
\10\ U.S. Department of Health and Human Services, Centers for Disease Control and Prevention, December 1999.
Mr. Bilirakis. Thank you, sir.
Doctor William J. Hall is President of the American College
of Physicians, the American Society of Internal Medicine based
here in Washington, DC. Please proceed, sir.
STATEMENT OF WILLIAM J. HALL
Mr. Hall. Thank you very much, Mr. Chairman.
Mr. Bilirakis. My son, by the way, is an internist. He was,
at least, a member of your organization, I don't know whether
he still is or not.
Mr. Hall. Well, we are going to intensively recruit him,
Mr. Chairman, I can tell you that now. I also have a son who is
an internist.
I'm an Internist and a Geriatrician, I practice in
Rochester, New York. I'm here today representing the American
College of Physicians, American Society of Internal Medicine.
We are the Nation's largest physician specialty organization,
we represent over 115,000 doctors of internal medicine. We
provide the bulk of primary and specialty care for adults in
this country, as we have for many, many generations.
I wanted to thank you, Mr. Chairman, for including the Flu
Vaccine Availability Act, H.R. 943, in your agenda this
afternoon. My organization, ACPSIM, strongly supports enactment
of this bill to help ensure that the influence of vaccine
shortages that many of you, or, perhaps, all of you, have heard
about in this past flu season, doesn't occur again and continue
to jeopardize the health of hundreds of thousands, if not
millions, of Americans.
Simply stated, this bill would authorize funding under the
Public Health Service Immunization Program, it would authorize
distribution of influenza vaccine to qualified health providers
throughout the country, including physicians. Enactment of this
measure would go a long way to prevent a recurrence of the
distribution problems that we had this past season, that I'll
allude to in a few minutes. But just briefly, at that time we
were faced, because of some technical problems, with a very
limited vaccine supply. This, for a variety of reasons, was
diverted from physicians, from hospitals, from health clinics,
to non-professional distributors and the subsequent vaccine was
distributed on a first-come, first-serve basis, regardless of
risk, and, therefore, depriving the people who would benefit
the most from this vaccination from getting the vaccination at
all.
Internal medicine physicians, internists, take care of many
people with chronic disease, and so we are very familiar with
this problem on a day-to-day basis in our daily practices. For
my own practice in geriatrics, it's something that I worry
about almost continually, because I deal with the patient
population that probably has the highest risk of having serious
complications.
I'm very proud that I live in a community that historically
has had the highest rate of immunization of any in the United
States, in excess of 85 percent for high risk members of our
population, generally, those over 65.
Last year, however, we were faced with a situation that our
supply of vaccination that was available for these people, many
of whom are uninsured and on limited incomes, was completely
unavailable. We could not begin to even immunize people in our
nursing homes.
Paradoxically, I was going to a meeting and changed planes
in Chicago and there was a card table set up in one of the
concourses where anybody walking by could get a flu shot for
$15.00. This didn't seem to make any sense, and didn't seem to
represent an equitable distribution and benefit from the health
care dollars and the research dollars that had gone into this
national program.
I'd like to concentrate really on two things. One is just a
slight primer on influenza, and then to tell you a little bit
about why the vaccination is such a cost effective measure for
our country, and then a little bit about what this act does to
make the distribution system a lot better.
Influenza is one of the great epidemics in history. It was
responsible for some of the plagues. It's a worldwide disease,
generally the wily virus is able to change its spots usually in
Asia and over the centuries would then gradually spread to the
western part of the world, through Europe and the United
States. In an era of globalization, this spread can occur
literally in about 6 to 7 hours, and, therefore, it is truly an
epidemic problem of the greatest proportion.
I would venture to say that there's not a person in the
room here who doesn't know what I mean when I say, got the flu,
it's a ubiquitous disease, most of us just have a few very bad
days, but some of us will not recover from the disease. We will
actually die, as do 20,000 Americans every year.
While the rates of infection are highest in our kids, our
young children, who also conveniently bring this disease home
into our homes, but really the serious illnesses and the
serious side effects occur in an older population of people,
age 65. I don't have to remind you in the House here that the
demographic imperative we are all facing is that the percentage
of older adults in our population will be growing at an
accelerated rate over the next 30 to 40 years, an unprecedented
time in history. This is a very serious problem, if we have a
preventative measure and it's not getting out to the people.
Just a word about the influenza vaccine. It's a very
effective, perhaps, arguably one of the most cost-effective
preventive measures that we have available to us in all of
medicine. It works, it's relatively complication free,
including local complications and more serious complications.
It has been honed to a precise science in terms of formulating
this precisely each year, and yet, what good does it do if
people who really need it can't get it in their community, and
yet anyone can get it at an airport concourse if you can pay
enough money for it.
The various advisory committees on immunization practices
throughout the country have set up prioritization, which has
general agreement in the medical profession. People over age 65
are the very highest risk group because of complications.
Individuals 50 to 64 would be the next highest, because of an
elevated prevalence of the potential for complications, and
then any of us who are around people with flu, health care
workers for sure, but also family members, people who care for
older people, also are at high risk.
Now, despite the fact that this is a very good product,
it's cost effective, it has an enormous evidence-based
scientific rationale for using it, current distribution has
very, very major problems. During this last so-called winter
season of flu, in 2000, vaccine distribution to retail outlets,
to grocery stores and drug stores, was basically given equal
priority with physician offices, health clinics, nursing home
facilities.
Our own organization was alarmed by this unorganized
distribution system, and our highest governing body, our Board
of Regents, passed a resolution this March, basically, calling
on manufacturers and government agencies to take this problem
very seriously, and one of the response to that has been H.R.
943. We thought there needed to be a rationalization of the
distribution system, so that the medicine gets to the right
people at the right time, not an unreasonable request. But, we
also began last year a very intensive program in virtually
every State of the Union, among all of our 115,000 members, to
make sure that our members were up to date on how to use
influenza vaccine, how to recognize high-risk populations, and
to get the job done. This is falling not on deaf ears, but it's
falling on ears that can't turn to other ears to find out what
they should do if they can't get the product.
Mr. Bilirakis. Please try to summarize, Doctor.
Mr. Hall. So, in summary, we are very much in favor of the
enactment of this legislation. It has a benefit to virtually
everybody in the room here, and we thank you for your
consideration.
[The prepared statement of Wiliam J. Hall follows:]
Prepared Statement of William J. Hall, President, American College of
Physicians--American Society of Internal Medicine
The American College of Physicians--American Society of Internal
Medicine (ACP--ASIM) is the largest medical specialty society and the
second largest medical organization in the United States, representing
115,000 physicians who specialize in internal medicine and medical
students.
ACP-ASIM supports the enactment of H.R. 943, the ``Flu Vaccine
Availability Act of 2001'' to help ensure that influenza vaccine
shortages do not jeopardize the health of thousands of Americans in
future flu seasons. The bill would authorize funding under the Public
Health Service immunization program for the distribution of influenza
vaccine to qualifying health care providers including physicians.
Enactment of this measure would help prevent a recurrence of the
distribution problems that took place during the 2000 flu season. At
that time, much of the limited vaccine supply was diverted from
physicians and hospitals to non-professional distributors who
distributed the vaccine on a first-come first-serve basis, regardless
of risk, thereby depriving patients most in need from receiving the
vaccine.
Many patients of internal medicine physicians qualify as high-risk
for complications from influenza, due to either chronic health
conditions or age. As a specialist in geriatrics, many of my patients
are among those in the highest risk categories, yet I could not be
assured of receiving adequate vaccine supplies last year. My colleagues
across the country reported delays that lasted well past the beginning
of flu season.
Without adequate and appropriate distribution of the influenza
vaccine, we are putting patients at great risk.
Epidemics of influenza typically occur during the winter months
and, according to the most recent report of the Advisory Committee on
Immunization Practices (ACIP), are responsible for approximately 20,000
deaths per year in the United States. Rates of infection are highest
among children, but rates of serious illness and death are highest
among people over age 65 and persons of any age who have medical
conditions that place them at increased risk for complications from
influenza.
The ACIP has recommended that the following groups be targeted for
annual vaccination:
a) groups that are at increased risk for influenza-related
complications (e.g., persons aged 65 years and persons of any
age with certain chronic medical conditions)
b) the group aged 50-64 years because this group has an elevated
prevalence of certain chronic medical conditions
c) persons who live with or care for persons at high risk (e.g.,
health-care workers and household members who have frequent
contact with persons at high risk and can transmit influenza
infections to these persons at high risk).
Vaccination is a highly effective and cost-efficient means of
preventing influenza. Research demonstrates that vaccinations reduce
influenza-related respiratory illness and physician visits among all
age groups, hospitalization and death among persons at high-risk,
otitis media among children, and work absenteeism among adults.
Despite the demonstrated effectiveness of vaccination in particular
risk groups, our national distribution system does not provide the
vaccine to high-risk patients first. Current distribution is based on
the date the vaccine was ordered rather than who needs it most. During
the 2000 flu season, vaccine distribution to retail outlets, such as
drugstores and grocery stores, was given the same priority as physician
practices, nursing homes, and hospitals. In response to this
unorganized distribution system, the ACP-ASIM Board of Regents adopted
a resolution on March 31, 2001 to call upon the manufacturers of the
influenza vaccine, non professional distributors of the vaccine, and
appropriate government agencies to ensure that adequate supplies of the
vaccine are made available to licensed health care providers prior to
distribution to other parties.
In October 2000, ACP-ASIM also began a 30-month Adult Immunization
Initiative to inspire, educate and assist our members to provide
influenza and other adult immunizations, all with the underlying goal
of improving adult immunization rates and preventing unnecessary
illness. Our educational efforts include providing information on the
recommended immunizations and immunization schedules, the risks
associated with not vaccinating, how to identify high-risk patients
within a typical patient population, and myths concerning immunization
safety. This initiative will also provide ACP-ASIM members with
practical tools to use in their offices.
The ACP-ASIM Adult Immunization Initiative has been supported by
the Centers for Disease Control and other organizations that have the
goal of improving overall adult immunization rates. Despite the efforts
of ACP-ASIM and others, higher immunization rates can only be achieved
if the vaccine is available to health care providers. If adequate
supplies of the influenza vaccine are not available for physicians, the
health of many high-risk Americans will remain in jeopardy. Therefore,
we urge you to pass this important legislation needed to improve the
supply and distribution of influenza vaccine in future years.
Mr. Bilirakis. Thank you very much, Doctor.
Ms. Debra Lundquist is Administrative Director for the
American Society for Reflex Sympathetic Dystrophy (RSD) and
Complex Regional Pain Syndrome (CPRS). Ms. Lundquist, please
proceed.
STATEMENT OF DEBRA LUNDQUIST
Ms. Lundquist. Thank you for giving me this opportunity to
speak for nearly 5 to 7 million Americans who live with Reflex
Sympathetic Dystrophy, a destructive and debilitatingly painful
neurological disease. We live with this constantly, although
the intensity of the pain varies, depending on the time of day,
stress, lack of sleep, weather. The list is endless.
The pain is the one common denominator for RSD patients.
The McGill Pain Index is used as a way to gauge the intensity
of the pain. It places the worst cancer at 27, and unexpected
amputation of a limb at 40, and RSD at 42, with nothing higher.
However, RSD is not just pain, it affects the nerves, the skin,
blood vessels, the muscles, bones and more. It is air movement
on the skin that brings you to your knees, hence the gloves. It
is a sympathetic nervous system gone amuck, that for some
unknown reason will not turn off, and RSD can be fatal.
Because our immune system is destroyed, we will most likely
end up with other diseases. Other secondary effects of RSD are
things that can affect our hearts, lungs, teeth, eyes, to name
a few. The highest cause of death for an RSD patient is
suicide.
Congressional support for an RSD Awareness Month would give
us a stepping stone to begin a massive educational program. We
need to educate all individuals on all aspects of this disease.
They need to be informed that a person can get RSD from
anything, literally. Such things as a paper cut, an infection,
a stroke, child birth, surgery, or any injury can cause it. RSD
does not discriminate, it can affect anyone. However, it does
appear that there is a higher incidence in women, and the cases
of children contracting it is increasing. Individuals need to
be informed on treatments for the disease and the purpose for
those treatments. There is no cure, but there could be a
remission of the pain. However, the treatments are barbaric at
best and have not changed much in the last 20 years or longer.
Education needs to start in our communities, and it needs
to be at all levels, and it needs to be in place prior to
someone contracting this disease to aid in the emotional
support for the patient, their family and care givers, to
prevent families from being destroyed through divorce and
desertion, to prevent the RSD family from losing everything
they have worked so hard for, and having to claim bankruptcy.
Education needs to be in the school systems, because children
with RSD are basically abused when at school by unknowing
teachers and classmates. Education is needed with Social
Security, so that disability is not so difficult to get for the
RSD patient. Without Social Security, one cannot get Medicare,
without Medicare some are completely denied any treatment
whatsoever. Workmen's Compensation and private insurance refuse
patients, doctor's appointments, tests and treatments. What is
so sad about this is that if patients were diagnosed within the
first 3 to 6 months and treated correctly, that individual may
be placed in remission and may be able to get back on the roles
of the working, instead of being on the roles of the disabled.
Congressional support for our RSD Awareness Month would
give us a head start in educating and would help us to do so on
a much broader level than we can right now. The medical
community is even uninformed when it comes to this disease. An
unbelievable number of professionals in the medical field know
absolutely nothing about RSD, including neurologists.
Another problem that we have is that RSD is known by
several other names, which causes problems in the proper
diagnosis and the proper treatment, and it all stems from a
lack of education, and we need research.
NIH has given us a budget line, however, there is very
little research being done. Information that we have been given
on RSD has come to us mostly as backwash from other research on
other diseases, and from the human guinea pigs we RSD patients
have become.
We need congressional support for our awareness month
desperately. We need it for education and for awakening the
medical community. We need this all for the reasons previously
stated and so that the proper diagnosis and treatment are given
in time.
Do you remember the last time you hit your crazy bone? Do
you remember the stinging and the burning feeling it gave you?
Imagine that ten times worse and living with it constantly.
This is close to RSD pain.
Please help us by putting your signature on the bottom of
this resolution. You will be helping 7 million Americans and
may also be helping someone in your family, if not yourselves.
Thank you for allowing me to speak on this issue.
[The prepared statement of Debra Lundquist follows:]
Prepared Statement of Debra Lundquist, Administrative Director,
American Society for Reflex Sympathetic Dystrophy/Complex Regional Plan
Syndrome
My name is Debra Lundquist and I have had RSD for more than two
years. Mine was caused from a car accident and is now full-body. Thank
you for giving me this opportunity to speak for nearly seven million
Americans who live with Reflex Sympathetic Dystrophy, a destructive and
debilitatingly painful neurological disease. We live with this
constantly, although the intensity of the pain varies depending on the
time of day, stress, lack of sleep, weather . . . the list is endless.
The pain is the one common denominator for RSD patients.
The McGill Pain Index is used as a way to gauge the intensity of
pain. It places the worst cancer as 27, an unexpected amputation is 40,
and RSD is a 42 with nothing above it.
However, RSD is not just pain. It affects the nerves, skin, blood
vessels, muscles, and bones. It is a sympathetic nervous system gone
amuck that for some unknown reason will not turn off. The list of the
effects of RSD is too long to mention here, but are included in the
materials that you have been given.
And RSD can be fatal. Because our immune system is destroyed we
will most likely end up with osteoporosis, arthritis, and other
illnesses such as lupus. Other secondary effects of RSD can affect our
hearts, lungs, teeth, eyes, to name a few. The highest cause of death
for the RSD patient is suicide.
This RSD awareness month is absolutely vital to our well being.
Although RSD was first labeled during the Civil War, there has been
little research done on it. Amazing considering that RSD affects
between 5-7 million Americans. Interestingly, most people have never
even heard of it. I know I hadn't.
An RSD awareness month would give us a stepping stone to begin a
massive educational program. We need to educate all individuals on all
aspects of this disease. They need to be informed that a person can get
RSD from anything, literally. Such things as a paper cut, an infection,
a stroke, childbirth, surgery, or any injury can cause it. RSD does not
discriminate. It can affect anyone. However, it appears that there is a
higher incidence in women and the cases of children contracting it is
increasing.
Individuals need to be informed on treatments for the disease and
the purpose for those treatments. There is no cure, there could be
remission of the pain. However, the treatments are barbaric at best and
have not changed much in the last 20 years or longer.
The education needs to start in our communities. It needs to be
statewide as well as at the Federal level. It needs to be in place
prior to someone contracting this disease to aid in the emotional
support for the patient, their family, and care givers; to prevent
families from being destroyed through divorce and desertion; to prevent
the RSD family from losing everything they have worked so hard for and
having to claim bankruptcy.
Education needs to be in the school systems because children with
RSD are basically abused when at school by unknowing teachers and
classmates. Parents are being charged with truancy because their
children are out of school for such long periods of time.
Education is needed with social security so that disability is not
so difficult to get for the RSD patient. Without social security, one
cannot get medicare. Without medicare, some are completely denied any
treatment whatsoever.
Workman's Compensation refuses patient's doctor's appointments,
tests, and treatments. What is so sad about this is that if the patient
were diagnosed within the first 3-6 months and treated correctly, that
individual may be placed in remission and may be able to get back on
the roles of the working instead of the roles of the disabled. Private
insurance is much the same way for some patients.
The awareness resolution, would give us a head start in educating
and would help us to do so on a much broader level then we can right
now. The medical community is even uninformed when it comes to this
disease. An unbelievable number of professionals in the medical field
know absolutely nothing about RSD, including neurologists. When someone
with RSD has to make an Emergency Room visit, that individual has to be
sure that the doctors and nursing staff understand RSD.
Another problem that we have is that RSD is known by several other
names. The multitude of names for this disease causes problems in the
proper diagnosis and proper treatment. And it all stems from a lack of
education.
And we need Research. NIH has given us a budget line. However,
there is very little research being done. The researchers have yet to
prove the hypothesis of what it is and how it works. Information that
we have been given on RSD has come to us mostly as backwash from
research on other diseases and from the human guinea pigs that we as
RSD patients have become.
We need this RSD awareness month desperately. We need it for
education and for awakening the medical community to the horrors
perpetuated on us by the lack of this education. We need this month to
help educate the insurance companies, including workman's compensation,
so that the proper diagnosis and treatment are given in time to place
the majority of individuals into remission.
Please help us by putting your signature on the bottom of this
resolution. You will be helping seven million Americans and may also be
helping someone in your family, if not yourself. Thank you for allowing
me to speak on this issue.
RSD Patients by State
--------------------------------------------------------------------------------------------------------------------------------------------------------
State No. State No. State No. State No.
--------------------------------------------------------------------------------------------------------------------------------------------------------
AK 15,594 IL 308,914 MT 22,441 RI 26,076
AL 110,616 IN 151,244 NE 42,565 SC 102,032
AR 66,497 IA 72,788 NV 49,704 SD 18,776
AZ 127,718 KS 66,871 NH 30,738 TN 146,488
CA 842,513 KY 100,534 NJ 209,296 TX 518,662
CO 106,988 LA 111,160 NM 45,246 UT 55,547
CT 84,734 MA 157,925 NY 472,014 VT 15,144
DC 14,229 ME 31,712 NC 200,216 VA 176,069
DE 19,491 MD 131,743 ND 13,486 WA 146,608
FL 397,541 MI 247,206 OH 282,394 WV 44,980
GA 203,602 MN 122,366 OK 85,830 WI 133,414
HI 30,135 MS 70,762 OR 85,103 WY 12,282
ID 32,185 MO 139,174 PA 305,475
--------------------------------------------------------------------------------------------------------------------------------------------------------
Updated January, 2001
STAGES
The symptoms for RSD/CRPS have been divided into 3 or 4 different
stages, depending on the literature that one reads. The 4th stage is
possible but has not been agreed upon by all doctors. Individuals will
move through these stages at their own pace. Some patients may have
symptoms for less than the 3 month period stated throughout this
literature, while others will have symptoms for years if not the rest
of their lives. Some patients may stay at one stage for years and never
progress to the next stage, some may rapidly move through the stages,
some may move back and forth between stages, and yet others will have
some symptoms in all stages, but not all symptoms in any one stage. The
stages are used as a benchmark for the severity of the RSD/CRPS that a
patient may be experiencing and the amount of time usually spent in a
single stage will vary. This cannot be stressed enough. However, in
other literature one sees these time frames listed and therefore we
felt a need to reference them strictly for informational purposes.
Please do not use these stages or time frames as a yardstick for each
person with RSD/CRPS, but more as a tool for how it may possibly
progress.
Stage 1
This stage is listed as the acute stage and it is suggested that it
may last from one to three months. A mild case of this disease lasts a
few weeks, then subsides spontaneously or responds rapidly to
treatment. Characteristics of this stage may include the intense pain
we discussed earlier including the burning sensation, deep aching,
throbbing, tingling, or a sharp stabbing feeling; hypersensitivity to
touch at and near the injury site; swelling, temperature changes,
sweating, and hair and nail growth may occur in the affected area. Many
may notice stiffness of joints and limited mobility developing. Any
stimulation, be it physical or emotional upset, will increase the
symptoms at this stage. Around 3 months into the disease, bone changes
may be visible on x-rays and layered bone scans may show hot spots
where the RSD/CRPS is located. At this stage there is decreased
sympathetic activity.
Stage 2
Stage 2 is acknowledged as the Dystrophic Stage and it may last
from three to six months. Characteristics at this stage may include:
pain as listed in Stage 1, but now it is a more chronic pain, meaning
it is more constant; one might notice that the skin has a different
almost bluish- cyan color to it or it becomes mottled with different
colors, brown, red, purple. RSD/CRPS is a very colorful disease.
Temperature changes will persist and become more noticeable, as well as
swelling and sweating. One may start noticing hair loss in the affected
area, nails may become brittle and ridged. One may also notice an
increase in the thickness of the joints; muscle wasting may become
noticeable and x-rays may reveal signs of osteoporosis. The skin may
develop a shiny appearance in the affected area. The patient may start
having short-term memory losses and they may start repeating
themselves. The senses, especially hearing and touch, may become extra-
sensitive. At this stage there is increased sympathetic activity.
Stage 3
Stage 3 is acknowledged as the Atrophic Stage and it may last an
undefined period of time. Characteristics at this stage may include:
pain as listed in Stage 1, but the pain may decrease or increase
depending on the situation or it may start spreading to involve the
entire extremity or even to other parts of the body. As stated earlier,
RSD/CRPS has its own personality and can spread in whichever direction
it so chooses. If one starts with left arm involvement, it may decide
to go to the right arm, or maybe the right leg, or possibly the
shoulder and neck. At this stage, the skin may become cool, thin, and
shiny. Contraction of the affected areas may be seen as well as atrophy
of the extremity or decreased joint movement; x-rays may show marked
demineralization and increased osteoporosis. Outwardly, there may be
skin atrophy or wasting away and irreversible damage may occur with
affected tissues.
Stage 4
As stated in the beginning, stage 4 is still controversial to the
medical and research communities. However, since one sees it listed in
some publications, we are showing it here. It is suggested that at this
point, which could be two years or more from the onset of the injury/
disease, the RSD/CRPS is probably not going to be helped with nerve
blocks because it has now changed ``directors''. The brain, from this
point on, originates the pain signals and distributes them throughout
the body instead of receiving the signals from the affected areas. The
brain, one might say, has effectively been ``reprogrammed'' and is now
``directing'' the pain.
One more issue to note is that it is unknown what percentage of
patients actually have their RSD/CRPS spread through their entire body
or become what is known as ``full body''. At this juncture, it becomes
what is known as ``systemic''.
Mr. Bilirakis. Thank you very much.
Mr. Larry Balthazar. I probably mispronounced it.
Mr. Balthazar. That's correct.
Mr. Bilirakis. Is that correct? Good, of Houston, Texas.
Sir, please proceed.
STATEMENT OF LARRY BALTHAZAR
Mr. Balthazar. Thank you.
Good afternoon. I would like to thank Chairman Bilirakis,
Representative Gene Green, and the distinguished members of
this subcommittee, for the opportunity to appear before you.
It's an honor and a great privilege to speak to day about
our life with diabetes. We are grateful that you are concerned
about how juvenile diabetes has dominated our lives for the
last 3\1/2\ years. Over 16 million Americans are afflicted with
diabetes, including hundreds of thousands of children.
My emotions must dictate my story today. Our life with our
son, Larry, Jr., who suffers from juvenile diabetes, is
frighteningly difficult, fearful, painful and unpredictable. We
are doing everything we know how just to survive. All our
energies are spent on an impossible balancing act that has
robbed my son of the carefree childhood every young person
deserves. I pray that you will never have to experience
diabetes first hand, and witness the responsibility and
discipline forced on these innocent children just to keep them
alive.
I wish I could take my son's pain away. I wish I was the
one who had to endure these painful injections, prick my
fingers many times a day to test my blood glucose, and be the
one to worry about losing my eyesight, kidney function, and
many other life-threatening complications, but I don't have
that option. So for now, I must do all I can to assure Larry,
Jr., that I am doing all I can to help him. This is why I am
here today.
On October 1, 1997, at 10:50 a.m., my office telephone
rang. I answered it and heard my wife's voice. I do not
remember her words, but I do remember the hurt and sadness in
her voice. She had taken our then 2 year old son in to his
pediatrician for an examination. He was experiencing excessive
bed wetting, an insatiable appetite for liquids, and often
times seemed very lethargic for a 2-year old. The news was he
had juvenile diabetes. We were in shock. I was not sure what it
was, but I knew I did not want it for my son. My wife said to
meet her at Children's Hospital immediately. I told Judy, my
assistant, about his diagnosis, and she sprang from her desk
and gave me a big hug. With tears already flowing from her
eyes, she said, ``Little Larry will be all right, take your
time and drive carefully to the hospital. Wait until you get
all the facts and don't worry about your desk, just take care
of your family and little Larry.'' She had never hugged me
before, nor had I seen her cry. Her father had diabetes.
Two hours after arriving at the hospital, my wife and I
were injecting ourselves in the upper thigh with a saline
solution in order to experience first hand what our son would
be required to receive for the rest of his life. We soon
learned that insulin is not a cure, merely life support to stay
alive. He was 2\1/2\ years old. We were fortunate to have a
great diabetes team to educate and coach us as we trained
little Larry, and we became his doctor and nurse in addition to
being his parents. The carefree days end for parents, too.
As I watched the diabetes team's compassionate strategy to
comfort us, it made the diagnosis even more frightening. Jill
was one of two nurses assisting us. I watched her as she fought
back tears while trying to convince us that he could live a
normal life. She had only been a diabetes nurse for a short
time, and she resigned shortly thereafter, because of the
emotional toll it had on her and the experience she had of
sharing this news to children and parents. She's still in our
life, and offers emotional support.
We quickly decided that if we continued with our current
lifestyle, our careers, our church involvement, our social
calendar, there may be a chance that at the age of 20 Larry
could have a leg amputated, suffer kidney failures, lose his
eyesight, or even die as a result of his diabetes. Major
changes were inevitable. What could we possibly gain that would
be sufficient to forgive our conscience and ease his hurt and
disappointment in his daddy and mommy? Nothing, our best
efforts are not a guarantee against the complications, however,
we hope our efforts will confirm to us that we did everything
we could to make managing Larry's diabetes our family priority.
Larry is our son. We are not naive enough to believe we
care anymore, work any harder, or suffer more deeply than the
other 1 million affected by Type I Juvenile Diabetes. However,
the millions that are suffering in silence, fear and
embarrassment saddens us. Our opportunity for a cure is too
great, and the long-term complications are too devastating to
be silent in our children's time of need.
The resolution being considered by this subcommittee urges
Congress to abide by funding recommendations set forth in a
congressionally mandated Diabetes Research Working Group
report. Congress mandated the report to investigate scientific
opportunity and the need for the National Institutes of Health,
and I urge you to take these expert recommendations seriously.
Research in islet transplantation has allowed 20 adults around
the world to throw away their syringes and vials of insulin for
good. I want my son, Larry, Jr., to experience the same.
As I conclude, Larry, Jr., has shown tremendous courage to
help us help him. Ten days after he was diagnosed, my wife and
I were agonizing over having to prick his tiny little fingers
for the fifth time, and it was only mid-afternoon. We began to
cry and comfort each other in prayer, seeking the energy and
discipline to keep him alive and healthy. Unaware of his
presence as we sobbed uncontrollably, he began to unzip his
diabetes supply kit, removed his glucometer and attempted to
insert a test strip into the meter for testing his blood sugar.
Of course, he was unsuccessful, but he recognized we needed him
to help us help him. Unfortunately, we cannot rely on great
acts of courage from our child to win this battle. We need
great acts of courage from the men and women of the U.S.
Congress to recognize the almost unimaginable requirements
associated with living with diabetes.
I ask that you take a moment to think about your own loved
ones and how you would stop at nothing if your child were in
pain. Research is our only hope. Please support the funding
recommendations provided by the Diabetes Research Working Group
in House concurrent resolution 36, and give my son the same
chance you would want to give your own.
I thank you for this opportunity, and I thank you for your
noble work in public service. I would be happy to answer any
questions.
[The prepared statement of Larry Balthazar follows:]
Prepared Statement of Larry Balthazar
Good afternoon. I would like to thank Chairman Bilirakis,
Representative Gene Green and the distinguished members of this
subcommittee for the opportunity to appear before you. It is an honor
and a great privilege to speak today about our life with diabetes. We
are grateful that you are concerned about how juvenile diabetes has
dominated our lives for the last three and a half years. Over 16
million Americans are afflicted with diabetes including hundreds of
thousands of children.
My emotions must dictate my story today. Our life with our son
Larry Jr. who suffers from juvenile diabetes is frighteningly
difficult, fearful, painful and unpredictable. We are doing everything
we know how to just to survive. All of our energies are spent on an
impossible balancing act that has robbed my son of the carefree
childhood every young person deserves. I pray that you will never have
to experience diabetes first hand and witness the responsibility and
discipline forced on these innocent children just to keep them alive. I
wish I could take my son's pain away. I wish I were the one who has to
take painful multiple injections, prick my finger many times a day to
test my blood glucose and be the one to worry about losing my eyesight,
kidney function and many other life threatening complications, but I
don't have that option. So, for now, I must do all I can to assure
Larry Jr. that I am doing all I can to help. This is why I am here
today.
Oct. 1, 1997 at 10:50am, my office telephone rang. I answered and
heard my wife's voice. I do not remember her words, but I do remember
the hurt and sadness and fear in her voice. She had taken our then 2-
year-old son in to the pediatrician for an examination. He was
experiencing excessive bed wetting, insatiable appetite for water and
juice and often times seemed very lethargic for a two-year-old. The
news that he had been diagnosed with juvenile diabetes. We were in
shock. I was not sure what it was, but I knew I did not want it for my
son. My wife said to meet her at the children's hospital immediately. I
told Judy, my assistant, about his diagnosis and she sprang from her
desk and gave me a big hug. With tears already flowing from her eyes,
she said, ``Little Larry will be all right. Take your time and drive
carefully to the hospital. Wait until you get all the facts. Don't
worry about your desk, just take care of your family.'' She had never
hugged me nor had I seen her cry before. He father had diabetes.
Two hours after arriving at the hospital, my wife and I were
injecting ourselves in the upper thigh with a saline solution in order
to experience first hand what our son would be required to receive
(insulin) for the rest of his life. We soon learned that insulin is not
a cure; merely life support to stay alive. He was two and a half years
old. We were fortunate to have a great diabetes team to educate and
coach us as we trained to become Larry's doctor and nurse in addition
to being his parents. The carefree days end for the parents, too.
As I watched the diabetes team's compassionate strategy to comfort
us, it made the diagnosis even more frightening. Jill was one of two
nurses assisting us. I watched her as she fought back tears while
trying to convince us he could live a healthy normal life. She had only
been a diabetes nurse for a short time, and she resigned shortly after
because of the emotional toll she experienced with sharing this news
with parents and children. She is still in our life and offers much
emotional support.
We quickly decided that if we continued with our current lifestyle,
our careers, church involvement, social calendar, etc, there may be a
chance that at the age of twenty, Larry could have a leg amputated,
suffer kidney failures, lose his eye sight or even die as a result of
his diabetes. Major changes were inevitable. What could we possibly
gain that would be sufficient to forgive our conscience and ease his
hurt and disappointment in his daddy and mommy. Nothing. Our best
efforts are not a guarantee against the complications, however we hope
our efforts will confirm to us that we did everything we could to make
managing Larry's diabetes our family's priority.
Larry is our son. We are not naive enough to believe we care any
more, work any harder or suffer more deeply than the other 1 million
plus affected by Type 1 or ``juvenile'' diabetes. However, the millions
that are suffering in silence, fear and embarrassment sadden us. Our
opportunity for a cure is too great and the long-term complications are
too devastating to be silent in our children's time of need. The
resolution being considered by this subcommittee urges Congress to
abide by funding recommendations set forth in the Congressionally
mandated Diabetes Research Working Group report. Congress mandated the
report to investigate scientific opportunity and need at the National
Institues of Health and I urge you to take these expert recommendations
seriously. Research in islet transplantation has allowed twenty adult
patients around the world to throw away their syringes and vials of
insulin for good. I want the same for Larry Jr.
Larry Jr. has shown tremendous courage to help us help him. Ten
days after he was diagnosed my wife and I were agonizing over having to
prick his tiny two year old fingers for the fifth time and it was only
mid afternoon. We began to cry and comfort each other in prayer,
seeking the energy and discipline to keep him alive and healthy.
Unaware of Larry's presence, as we sobbed uncontrollably, he began to
unzip his diabetes supply kit, removed his glucometer and attempted to
insert a test strip into the meter for testing his blood. Of course, he
was unsuccessful, but he recognized we needed him to help us help him.
Unfortunately, we can not rely on great acts of courage from our
child to win this battle. We need great acts of courage from the men
and women of the US Congress to recognize the almost unimaginable
requirements associated with living with diabetes. I ask that you take
a moment to think about your own loved ones and how you would stop at
nothing if your child were in pain. Research is our only hope. Please
support the funding recommendations provided by the Diabetes Research
Working Group in House Concurrent Resolution 36 and give my son the
same chance you would want to give your own. I thank you for this
opportunity and I thank you for your noble work in public service. I
would be happy to answer any questions from the subcommittee.
Mr. Bilirakis. Thank you very much, sir. I know it was
awfully tough on you.
Michael Coburn is President and CEO of the Tuberous
Sclerosis Alliance. Mr. Coburn, please proceed.
STATEMENT OF MICHAEL COBURN
Mr. Coburn. Thank you, Mr. Chairman. It's a pleasure to
join you today.
I represent the Tuberous Sclerosis Alliance, which is the
only national voluntary health organization dedicated to
finding a cure while improving the quality of life for those
affected with tuberous sclerosis. Tuberous Sclerosis Complex is
a genetic disorder characterized by seizures and tumor growth
in organs such as the brain, heart, kidneys, lungs and skin.
Individuals with tuberous sclerosis commonly begin having
seizures in the first year of life, and conventional epilepsy
therapies often do not control this seizure activity.
Seizures, as well as brain tumors, contribute to cognitive
impairment, and as a result the majority of those afflicted
with tuberous sclerosis experience some form of learning
disability, behavioral problem, autism or mental retardation.
Tumors in individuals with tuberous sclerosis are benign but
compromise the function of a number of organs. Kidney tumors,
for instance, may lead to significant difficulties, and even
death, if not properly diagnosed and treated. Skin tumors and
lesions can be disfiguring and cause medical complications and
social stigma in the life of those living with tuberous
sclerosis.
The toll on the family of a person with tuberous sclerosis
is enormous. Care for individuals with tuberous sclerosis often
requires ongoing treatment that involves five or more medical
specialists, speech, occupational and other therapists, as well
as those skilled in the care and educational, as well as
emotional, development of any medically and mentally disabled
individual. Many families face significant financial, emotional
and social hardships, and sadly, more than 60 percent of those
living with tuberous sclerosis will never live an independent
life or lead the quality of life that we would hope for every
man, woman and child.
There are an estimated 50,000 Americans and 1 million
people worldwide affected by tuberous sclerosis. One in every
6,000 infants is born with this disease. Unfortunately and
however, this disease has a relatively low profile. To date,
there have been no known prominent individuals or high-profile
individuals affected by tuberous sclerosis whose personal story
would likely raise the public profile of this disease. What is
even more notable and disturbing, however, is that the medical
community lacks awareness of tuberous sclerosis, and many cases
go either undiagnosed or misdiagnosed. Yet, tuberous sclerosis
is more prevalent than a number of diseases or medical
conditions that have become well known by name in the general
population.
Tuberous sclerosis is caused by a genetic mutation, either
inherited or spontaneous. Research initiated for and funded by
the Tuberous Sclerosis Alliance has helped identify genes
associated with the disease. Continuing molecular research
supported by the Tuberous Sclerosis Alliance and others
continues to shed light on the interactions between the
proteins in these genes with significant implications and links
to other major diseases and disorders. This research is
critical in developing effective remedies, therapies and
treatments for tuberous sclerosis, but also this research using
this known genetic disease model may provide answers to a host
of questions about cancer, renal disease, or a number of
neurological disorders, including autism and epilepsy.
The Tuberous Sclerosis Alliance funds a modest, yet
successful, basic science program, and most recently awarded
$1.7 million in multi-year grants. These funds raised by the
Alliance come largely from the families and friends of those
challenged by the disease. This program funds a major portion
of all direct research on tuberous sclerosis. There is a huge
disparity in the research that a relatively small group of
families and individuals are able to fund as compared to the
research necessary for a population of individuals with
tuberous sclerosis that compares to, for instance, the entire
population of the city of Harrisburg, Pennsylvania, or a
similar-sized city.
The Tuberous Sclerosis Alliance is seeking the help of
Congress to raise awareness and cause dedicated research on
tuberous sclerosis. The outstanding talent and resources of the
Federal Government's health system, through a coordinated
effort, can accelerate the understanding of the biological
mechanisms causing tuberous sclerosis.
Awareness caused by the appropriate health institutions
within the Federal system can help lead to accurate and early
diagnosis. Early and aggressive diagnosis and interventions can
dramatically improve the chances for a higher quality of life
for those born with tuberous sclerosis. Increased scientific
and clinical research is needed now to develop therapeutics or
interventions to control epilepsy and tumor growth. Behavioral
research is needed to identify the causes of autism or other
cognitive impairment and mental illness in tuberous sclerosis.
Genetic medicine, with the increased knowledge of the human
genome, needs to be explored. In fact, there are more than a
dozen institutes or centers within the National Institutes of
Health that can play a significant role in tuberous sclerosis
scientific and clinical research. We ask for the help of
Congress to request through the NIH Director that cross-
institute resources be identified and engaged to develop a
comprehensive research plan to cure tuberous sclerosis and that
increased funding be earmarked to support this effort. We ask
for the help of Congress, and through the appropriate medical
and scientific agencies, to help increase the awareness of
tuberous sclerosis within the Nation's health system.
Finally, we are thankful for the support of Representative
Sue Kelly, for sponsoring House concurrent resolution 25, for
her personal interest in tuberous sclerosis. We also thank the
many members who have joined Representative Kelly in
sponsorship of H. Con. Res. 25, and look forward to working
with the leadership of Congress and the NIH to find a cure for
tuberous sclerosis and improve the quality of life for those
who are affected with this disorder.
Thank you very much, Mr. Chairman.
[The prepared statement of Michael Coburn follows:]
Prepared Statement of Michael Coburn, President and Chief Executive
Officer, Tuberous Sclerosis Alliance
Good afternoon. My name is Michael Coburn and I am president and
chief executive officer of the Tuberous Sclerosis Alliance, the only
national voluntary health agency dedicated to finding a cure for
tuberous sclerosis while improving the quality of life of those
affected by this disease.
Tuberous sclerosis complex (TSC) is a genetic disorder
characterized by seizures and tumor growth in vital organs such as the
brain, heart, kidneys, lungs and skin. Individuals with tuberous
sclerosis commonly begin having seizures during the first year of life,
and conventional epilepsy therapies often do not control the seizure
activity in infants, children or adults. Seizures, as well as brain
tumors, contribute to cognitive impairment. As a result, a majority of
those afflicted with tuberous sclerosis experience some form of
learning disability, behavioral problem, attention deficit
hyperactivity disorder, autism or mental retardation.
Tumors in individuals with tuberous sclerosis are benign but
compromise the function of a number of major organs. Kidney tumors may
lead to significant difficulties and even death if not properly
diagnosed and treated. Skin tumors and lesions can be disfiguring and
cause medical complications and social stigma in the life of an
individual living with tuberous sclerosis.
The toll on the family of a person with tuberous sclerosis is
enormous. Care for a tuberous sclerosis patient often requires ongoing
treatment that involves five or more medical specialists, speech,
occupational and other therapists, as well as those skilled in the
proper care and educational and emotional development of a medically
and mentally disabled individual.
Many families face significant financial, emotional and social
hardships. Sadly, more than 60 percent of those living with tuberous
sclerosis will never be able to live independently or experience the
quality of life we would hope and wish for every child, woman or man.
There are an estimated 50,000 Americans and 1 million people
worldwide affected by tuberous sclerosis. One in 6,000 infants are born
with TSC. Unfortunately, however, this disease has a relatively low
profile.
To date, there are no known prominent or high profile individuals
affected by tuberous sclerosis whose personal story would likely help
raise the public profile of this disease. What is even more notable and
disturbing is the lack of knowledge about TSC within the medical
community, and as a result, countless cases either go undiagnosed or
misdiagnosed. Yet, tuberous sclerosis is more prevalent than a number
of diseases or medical conditions that have become well known by name
in the general population.
Tuberous sclerosis is caused by a genetic mutation, either
inherited or spontaneous. Research initiated or funded by the Tuberous
Sclerosis Alliance has helped identify the genes associated with the
disease, TSC1 and TSC2. Continuing molecular research supported by the
Tuberous Sclerosis Alliance and others continues to shed light on
interactions between the proteins in the TSC1 and TSC2 genes with
significant implications and links to several other major diseases or
disorders. This research is critical in developing effective remedies,
therapies and treatments for tuberous sclerosis, but also, research
using this known genetic disease model may provide answers to a host of
questions about cancer, renal disease, or a number of neurological
disorders, including epilepsy and autism.
The Tuberous Sclerosis Alliance funds a modest yet successful basic
science research program and most recently awarded $1.7 million dollars
in multi-year research grants focused on building the scientific
knowledge of tuberous sclerosis to help identify treatments and cures
for all aspects of TSC.
These funds, raised by the Alliance, come largely from families and
friends of those challenged by this disease. This research program
funds a major portion of all research conducted directly on TSC. There
is a huge disparity in the research that a relatively small group
families and individuals are able to fund as compared to the research
necessary for a population of TS-affected individuals that compares to,
for instance, the population of the city of Harrisburg, Pennsylvania,
or similar cities.
The Tuberous Sclerosis Alliance is seeking the help of Congress to
raise awareness and to cause dedicated research on tuberous sclerosis.
The outstanding talent and resources of the federal government's health
and research institutes, through a coordinated effort, can accelerate
the understanding of the biological mechanisms causing tuberous
sclerosis. Working in partnership with other research initiatives, the
government can help lessen the long-term impact of this devastating
disease.
Awareness caused by the appropriate health institutions within the
federal system can help lead to accurate and early diagnosis. Early and
aggressive interventions can help dramatically improve the chances for
a higher quality of life for those born with tuberous sclerosis.
Increased scientific and clinical research is needed now to develop
therapeutics or other interventions to control the epilepsy and tumor
growth in the brain. Behavioral research is needed to identify causes
of autism, or other cognitive impairment and mental illness caused by
tuberous sclerosis. Genetic medicine, with the increased knowledge of
the human genome, needs to be explored. In fact, there are more than a
dozen institutes or centers within the National Institutes of Health
that can play a significant role in tuberous sclerosis scientific and
clinical research.
We ask for the help of Congress to request, through the NIH
director, that cross-institute resources be identified and engaged to
develop a comprehensive research plan to cure tuberous sclerosis and
that increased funding be earmarked to support this research.
We ask for the help of Congress to request that the appropriate
federal medical and scientific agencies help increase the awareness of
tuberous sclerosis within the nation's health system to provide the
earliest possible detection and treatment for a disease that can have
such severe life-long consequences. We greatly appreciate the increased
level of funding for the National Institutes of Health and applaud the
leadership of Congress to advance research toward optimizing the health
of our citizens. We look forward to better serving the population
affected by tuberous sclerosis by including this disease among the
priorities established to advance the health of the American people.
The Tuberous Sclerosis Alliance thanks Representative Sue Kelly for
sponsoring House Concurrent Resolution 25 and for her personal interest
in tuberous sclerosis. We thank the many Members who have joined Rep.
Kelly as co-sponsors of H. CON. RES. 25. We look forward to working
with Members of Congress and leadership of the National Institutes of
Health in doing all that is possible to find a cure for tuberous
sclerosis while improving the quality of life for every person born
with this disease.
Thank you very much for this opportunity to address the
Subcommittee.
Mr. Bilirakis. Thank you very much, Mr. Coburn, and I will
tell you that having Ms. Kelly as the proponent is good,
because she's very vocal, and she's approached me many times as
recently as just yesterday on pieces of legislation.
Ms. Judy Cushing is the Immediate Past President of the
National Family Partnership. Ms. Cushing, please proceed.
STATEMENT OF JUDY CUSHING
Ms. Cushing. Thank you, Mr. Chairman. Thank you, Chairman
Bilirakis, and Ranking Member Sherrod Brown, and members of the
subcommittee for inviting me to speak to you today on an
important topic of substance abuse awareness and prevention.
I am going to make my remarks very brief, and stray from my
written testimony to say that I've been moved in what I've just
heard in the last half hour in the testimony about the
debilitating diseases affecting young people and adults in this
country, very serious diseases, and I wouldn't trade places
with you for the world as you make decisions regarding research
and support for those important efforts.
I'm here to talk to you about another very serious health
issue facing young people in this country, and that's alcohol
and drug abuse. Alcohol-related accidents are the No. 1 killer
of America's teens, from automobile crashes, to homicides, to
suicides, and other related accidents. Alcohol use in this
country is now affecting our youngsters. The average age of
first use of alcohol today for boys is 11, for girls it's 12.8
years.
The research is telling us now that if young people begin
using alcohol and drugs before the age of 15 they are four
times more likely to become addicted. We will have an epidemic
in this country in the next decade unless we stand up on this
issue. This is an issue that society doesn't really want to
address. It's an issue that's shoved under the table a lot of
the times.
In 1980, an organization was formed, the National
Federation of Parents for Drug Free Youth, now called the
National Family Partnership, by parents who were concerned
about the issues facing kids then. A lot of it had to do with
the rising drug use across the country. Parents armed
themselves with information and they mobilized around kitchen
tables and school libraries and said we're going to do
something about this. The National Family Partnership and other
groups formed a parent movement that from 1979 to 1992 reduced
drug abuse in this country by 50 percent.
During that time, an occurrence that changed our field
happened with the death of ``Kiki'' Camarena, a DEA agent who
was brutally tortured and murdered in Guadalajara, Mexico. Mr.
Camarena represented the efforts, not only by law enforcement,
but by communities, in trying to create awareness and do
something about reducing drug abuse among youth.
Following the death of Kiki Camarena in 1985, the youth and
citizens of Calexico, California, his hometown, banded together
and said we are going to do something about this problem,
something that our young here and father of two stood for, and
that was combating drug abuse among youth in the country. They
began wearing red ribbons, and soon California began wearing
red ribbons, and the National Federation of Parents for Drug
Free Youth picked up the banner and the red ribbon celebration
began. The red ribbon has become the national symbol for drug
prevention in our country. Every year more than 81 million
people, young people, their families and their schools and
communities, gather around to raise awareness about the issues
facing communities, and it is communities that will make a
difference on this issue.
I want to thank Representative Baca for bringing House
Resolution 84 before you, concurrent House resolution, to
support the National Red Ribbon Celebration. I want to thank
you for your understanding of the fact that drug abuse and drug
prevention can occur only in communities and families where it
begins. I thank you for your willingness to stand up and be
counted, and to recognize the National Family Partnership and
our partners across the country.
[The prepared statement of Judy Cushing follows:]
Prepared Statement of Judy Cushing, President/CEO, Oregon Partnership
My name is Judy Cushing. I am President and CEO of the Oregon
Partnership, a statewide non-profit organization dedicated to substance
abuse prevention education and treatment referral. I am immediate past-
President of National Family Partnership (NFP), a network of parents
and parent groups, and the national sponsor of the Red Ribbon
Celebration. Before I begin my prepared remarks, I wish to thank you,
Chairman Bilirakis, and Ranking Member, Representative Sherrod Brown,
and the members of the Subcommittee on Health for inviting me to speak
to you today on the important topic of substance abuse awareness and
prevention.
The National Family Partnership (formerly the National Federation
of Parents for Drug Free Youth) was formed in 1980 by parents across
America in response to the rising level of youth drug use. The mission
of the National Family Partnership is ``to lead and support our
nation's families and communities to nurture the full potential of
healthy, drug-free youth.'' The National Family Partnership works to
accomplish its mission through the distribution of educational
materials, parent networking and a membership of concerned individuals
and affiliated groups nationwide. Peggy B. Sapp of Miami, Florida,
currently serves as President of National Family Partnership.
Oregon Partnership is a state affiliate of the National Family
Partnership. Through my work with NFP and Oregon Partnership, I know
the value and importance of the public awareness NFP brings to bear on
prevention issues, most notably through coordination of the national
Red Ribbon Celebration.
Red Ribbon Week began in 1985 following the death of Enrique
``Kiki'' Camarena, a Drug Enforcement Agent who was close to uncovering
the identities of key members of a Mexican drug cartel. Saddened by his
death and concerned by the destruction caused by drugs in America, his
friends, and family and young people, in his hometown of Calexico,
California began wearing Red Ribbons in his honor to raise the
consciousness of communities throughout the Imperial Valley. ``Camarena
Clubs'' sprouted throughout the little border town and the rest of the
Valley, led by the efforts of Congressman Duncan Hunter, his wife, Lynn
Hunter, and a former schoolmate of Kiki's, Henry Lozano. At that time,
Mr. Lozano was Executive Director of Teen Challenge. Inspired by Kiki's
commitment to drug-free kids, Henry traveled across the Imperial Valley
establishing Camarena Clubs and sparking public awareness about the
importance of drug prevention.
Through his local and statewide prevention efforts, Henry Lozano
invited Carol Stein, President of Californians for Drug Free Youth--a
state affiliate of the National Family Partnership--to be part of Red
Ribbon activities. The National Family Partnership and its affiliated
organizations started a grassroots movement using the Red Ribbon as a
symbol of their commitment to drug free youth. By the early 1990's,
National Family Partnership had taken Red Ribbon Week nationwide, and
today the Red Ribbon has become the national symbol for drug prevention
across America.
This year's Red Ribbon Celebration theme is ``Plant the Promise to
Keep Kids Drug Free.'' On Tuesday, October 23, 2001, National Plant the
Promise Day, parents and students across America will plant bulbs that
bloom into vibrant red tulips in the Spring to serve as a constant
reminder of the importance of remaining drug free. The National Family
Partnership is honored that President George W. Bush and First Lady,
Laura Bush are Honorary Chairpersons of the National Red Ribbon
Celebration for 2001.
Since it's inception in 1985, Red Ribbon Week has left a long list
of accomplishments. Among them:
<bullet> Red Ribbon Week activities engage over 80 million participants
annually. From schools and businesses, to neighborhoods, youth,
and families--Red Ribbon Week is a catalyst for action.
<bullet> Red Ribbon awareness extends well beyond October, with
teachers utilizing lesson plans and resources from National
Family Partnership and its affiliate members in thousands of
schools and communities year-round.
<bullet> In Oregon, Red Ribbon is a springboard to raising public
awareness. For example, Oregon Partnership launches a Red
Ribbon public awareness campaign in tandem with local
businesses each year.
<bullet> The Oregon Youth Soccer Association partners with Oregon
Partnership to distribute substance abuse prevention
information and materials to 50,000 youth and parents
throughout Oregon.
<bullet> Last year, in Connecticut, a local ice cream chain offered
special discounts and free ice cream to Red Ribbon Week
participants--and they distributed awareness materials
throughout their communities.
These are just a few concrete examples of how the National Family
Partnership and Red Ribbon Week activities make a positive impact in
communities nationwide. It is fair to say that although our motto at
Oregon Partnership is ``Preventing Substance Abuse . . . Changing
Lives,'' Red Ribbon is a major catalyst to helping us to meet that
goal--not just in Oregon, but also throughout America.
Additionally, this year the National Family Partnership hopes to
collaborate with Congress through an initiative to engage parents
across America. National Family Partnership's ``Parent College'' will
recruit and train parents in prevention education for their children's
critical early years. The program focuses on identifying resources for
parents and collaborating with community stakeholders to provide
primary prevention and education to strengthen healthy families. This
effort will result in measurable, qualitative outcomes.
Thank you all for the opportunity to share this information with
you today. I would like to reiterate my thanks to the Chairman for
inviting my comments. I would also like to thank the National Family
Partnership and Peggy Sapp for the opportunity to testify on their
behalf, and to Henry Lozano for his tireless work on behalf of
prevention advocates everywhere. Red Ribbon Week prevention activities
are a critical tool through which local communities learn, educate, and
act to ensure a healthier future for our children. I do hope the
committee will look favorably on, and indeed pass, the proposed
resolution for which this hearing has been called.
Mr. Bilirakis. Thank you, Ms. Cushing.
You made the comment of, and I could see it on the
expression on your face, while the testimony was taking place,
of the sadness you feel hearing these stories. It hits me that
Larry's son did not do anything to acquire Type I Juvenile
Diabetes, and the story of Mr. Coburn, and so many others, Mr.
McMahon, Ms. Furlong, their lives are hurt or shattered, and
not by virtue of anything that they did. Yet there are so many
people out there who shatter their own lives as a result of
taking drugs and liquor. It's terrible.
I talk about the horrible story of autism, and other
diseases, and I was telling Mr. McMahon last night that a kind
of the sadness comes with this job of learning about diseases,
some that you didn't even know existed. You could hear a pin
drop in here while the witnesses were testifying, and I can
dare say there aren't many committees in the Congress that can
say that.
One thing too about health, it's like I say about flying,
it kind of makes me wonder why the airlines are not more aware
of the problems, and the late schedules, and the cancellations,
sometimes without any good reason and they should realize that
every Member of Congress flies, and we experience those
problems, and I dare say if somebody had the courage to bring
up a re-regulation bill, it might be a result of our personal
experiences. So, when it comes to health, all members of our
family, my wife has diabetes, and her mother passed away with
diabetes, and other members of the family. My youngest brother
passed away with Parkinson's, Parkinson's related, so we've all
experienced, and even though we are in an ivory tower we have
to make decisions on so many pieces of legislation, many of
them we've never really experienced. We do the best that we can
based on testimony, based on debates, based on what our staffs
recommend to us, and based sometimes on what your heart tells
us, but when it comes to health we've experienced it, and we
experience it all the time.
We can go into a lot of questions here. I would ask you,
Mr. Merenstein, I am sorry I wasn't in the room when you
testified, you mentioned the BRAVO bill, talked about it, I'm
not sure if Mr. Brown was even here at that time, but--he was,
that's great, because he's my partner on that legislation. A
Member of Congress asked me to go out and talk to him and a
member of one of his constituents regarding a Food and Drug
Administration problem. We have all that too in this committee,
and that's why I went outside here and spoke with him so I
couldn't hear you testify.
If we could get your help on the BRAVO Act, or something
like it. There's no pride in authorship here, something like
it, so that people who have an opportunity to get an income tax
refund can decide if a certain portion of it, check off a
certain portion of that would go to NIH for funding, I think it
would just be fantastic. And, the legislation specifically says
this is not to be offset by the regular appropriation on the
part of the Congress. We would be very careful with that.
So, you can help your cause, and it's not your cause, your
cause is people, by really getting vocal in that regard and
helping us to gain some co-sponsors. The problem that we're
having there, I don't mind telling you, as I understand it from
my staffs over the years, is that Ways and Means feels they are
going to be creating another precedent for a check off on the
tax return and where do you stop. I don't think that's a good
enough reason to not do it, and if it is a precedent it's a
darn good one, I think.
Having said all that, I'm just going to yield to Mr. Brown
at this point.
Mr. Brown.
Mr. Brown. Thank you, Mr. Chairman. Thank you for your
comments.
One, I would like to enter this article, Ms. Eshoo would
like to, the New York Times article today about stem cell
research.
Mr. Bilirakis. Without objection, that will be the case.
[The New York Times article follows:]
[Wednesday, June 27, 2001--The New York Times]
U.S. Study Hails Stem Cells' Promise
By Robert Pear
A new report from the National Institutes of Health says research
on stem cells derived from both human embryos and adult tissue promises
``a dazzling array'' of treatments for various diseases, but for some
purposes, it says, the embryonic cells are clearly superior.
The confidential study was prepared as part of the Bush
administration's review of federal policy on embryonic stem cells.
Officials within the administration are split over whether to prohibit
federal spending on experiments using such cells, which have the
ability to develop into almost any cells or tissues in the human body
and thus may be useful in replacing or repairing failed tissues and
organs.
The report, while emphasizing the limitless potential of embryonic
stem cells, also suggests that the government should support research
on adult stem cells. The adult cells ``are capable of developing into
more kinds of cells than previously imagined,'' it says, noting how
blood stem cells can develop into brain cells, liver cells and heart
muscle cells.
``All avenues of research should be exhaustively investigated,
including both adult and embryonic sources of tissue,'' the report
says.
The report, based in part on an exhaustive survey of scientific
journals, affirms the scientific consensus, with an immense amount of
detail obtained from interviews with researchers around the world. But
it does not analyze ethical, legal or social issues of stem cell
research.
While advocates of federal spending for such research point to the
promise of new treatments or cures for ills like Parkinson's disease
and diabetes, anti-abortion groups, conservatives and the Roman
Catholic Church object on moral grounds to using stem cells extracted
from embryos, even those at fertility clinics that might otherwise be
discarded.
Some Bush advisers, led by Karl Rove, fear that federal support for
the research will alienate these groups at a time when President Bush
seeks to solidify his support among conservatives and Catholic voters.
Mr. Bush has said he opposes federal spending on stem cell research
that involves the destruction of living human embryos. But he says he
supports ``promising research on stem cells from adult tissue.''
The embryonic stem cells are typically derived from five-day-old
embryos consisting of 200 to 250 cells, says the report, titled, ``Stem
Cells: Scientific Progress and Future Research Directions.''
The report notes some of the limitations of research with adult
cells.
``Adult stem cells are rare,'' the report says. ``One of the
advantages of using embryonic stem cells as compared with adult stem
cells is that the embryonic cells have an unlimited ability to
proliferate'' in the laboratory.
But for this very reason, the report says, the embryonic cells
carry a special risk: their ability to proliferate means that they are
more likely to induce the formation of tumors, particularly benign
tumors.
White House officials said they were not familiar with the
institutes' study, which was requested by the secretary of health and
human services, Tommy G. Thompson. Mr. Thompson was evidently planning
to share the study with the White House, but an aide to Mr. Bush asked
the department for details today after The New York Times obtained a
copy of the document and asked the administration for comment.
Lawyers at the Department of Health and Human Services are studying
whether the government can pay for experiments with embryonic stem
cells in view of a law that says no federal money can be used for ``the
creation of a human embryo or embryos for research purposes.''
Under guidelines issued by the Clinton administration last August,
scientists can use federal money to conduct research with embryonic
stem cells created in the course of fertility treatments. But
scientists cannot use federal money to extract the stem cells from
human embryos.
The National Conference of Catholic Bishops and other critics
denounce this distinction as sophistry. In the process of obtaining
embryonic stem cells, they say, scientists destroy the embryos, thus
killing human life.
The study describes the potential uses of stem cells in treating
Alzheimer's disease, Parkinson's disease, heart disease and diabetes,
among other illnesses. It may soon be possible, the report says, to
coax human embryonic stem cells into forming pancreatic cells that
produce insulin and reverse the symptoms of diabetes.
Likewise, the report said, scientists have developed a technique to
induce stem cells from mouse embryos to develop into nerve cell
precursors that secrete a chemical messenger known as dopamine, and
unpublished research suggests that these nerve cells may be able to
eliminate symptoms of Parkinson's disease in rats.
Dopamine helps the nervous system control muscle activity. In
patients with Parkinson's disease, dopamine-producing nerve cells
degenerate for unknown reasons.
With heart disease, the report says, both embryonic and adult stem
cells may be able to replace damaged heart muscle, and to develop new
blood vessels that supply the heart muscle. Adult stem cells are
``viable candidates for heart repair'' work, the study said, but the
embryonic cells have an advantage because they produce a larger supply
of cells for transplants.
The report also cites evidence that embryonic stem cells can
restore nerves and mobility in rats paralyzed with a condition similar
to Lou Gehrig's disease.
Within three months of receiving injections of cells derived from
embryonic stem-cells, it said,``many of the treated rats were able to
move their hind limbs and walk, albeit clumsily, while rats that did
not receive cell injections remained paralyzed.''
The study also examined possible treatments for heart disease. The
repair of a damaged human heart, it said, would probably require
millions of heart muscle cells. The capacity of embryonic stem cells to
replicate in the laboratory ``may give them an advantage over adult
stem cells by providing large numbers of replacement cells in tissue
culture for transplantation purposes,'' the report said. But it is
unclear how adult stem cells could generate sufficient heart muscle to
meet patients' demand, the study said.
Mr. Brown. Ms. Furlong, thank you for joining us, a fellow
Ohioan, and Ms. Furlong, I know everyone listened to her today,
I unfortunately had another committee I had to run and came
back in the middle of your testimony, but she and her daughter
were in Washington several months ago, and I heard her, the
first time I met her and heard her speak about her family and
heard her speak so passionately, not just about the most
important thing in her life, her family, but also what she was
doing to help others.
And, she and her daughter both, in many ways, have put
their life on hold to help others, and to suffer from this
terrible disease, and everyone here should know that, and all
of us should be grateful for what you do, and the courage
you've shown, and the compassion you've shown, so thank you for
that.
Ms. Furlong. Thank you.
Mr. Brown. You know, we've known about the gene that causes
Duchenne since 1987. Tell us, if you would, the most
significant muscle-related research success stories over the
last 5 years or so, if you would, just to give us an
understanding of what we can and should do if we pursue the
sort of research on this disease, and for that matter with Mr.
Balthazar on diabetes, and so many others, but if you can give
us sort of where we've come in the last 5 years and developed.
Ms. Furlong. I think we have a number of emerging
strategies that could be significant, and certainly we hope in
the near term could be translated to these children. One of
them that would be specific for a subset of the population
would be gentomyocin. This is an antibiotic that is currently
available, FDA approved and so on, that's been found to read
through one of the particular mutations called a premature stop
code. Essentially, what we are looking at is some of the
children, a subset of the children, have sort of a period in
their DNA code, and this period says to stop reading through,
and, therefore, they don't have dystrophin. If we can get the
gentomyocin to work and read through there are some sort of
problems in terms of the isomers and the chemical configuration
of the aminoglycaside gentomyocin, but that would certainly,
and could promote the health of a certain subset of the
population.
The scientists have been capable on another feat of
reducing the size of the dystrophin gene. This is one of the
largest genes identified. It's 2.5 million base pairs, which
makes it a considerable size to sort of smoosh into a vector
and then deliver to the cells. So, they have been significantly
successful at reducing and using the most important points and
getting a mini gene, if you will, or a small version of that
gene, and as maybe, perhaps, some of you know, the Adeno-
Associated Virus has been relatively successful in the
hemophilia trials and, in fact, if mini gene does fit into the
AAV or the Adeno-Associated Virus.
So, there are also strategies to repair the gene that are
emerging, it's called chimeraplasty, and a number of other
approaches to look at the specific mutation of each individual
child or subset of children and try to repair the genetic
error.
There's one other strategy that is certainly useful and
promising, and that is the up-regulation of an associated
protein called eutrophin, and certainly that eutrophin has been
found to be and able to substitute for dystrophin, so those are
the emerging strategies that certainly could have an effect on
these boys.
Mr. Brown. Thank you.
Thank you, Mr. Chairman.
Mr. Bilirakis. You know your subject, and I apologize, I
messed up your name a moment ago I think.
Ms. Furlong. That's okay.
Mr. Bilirakis. Mr. Pitts, and we appreciate your staying
here all of this time, sir.
Mr. Pitts. Thank you, Mr. Chairman, and thank you for
convening this hearing, inviting this distinguished panel of
witnesses, and for having the privilege of hearing such moving
testimony.
First of all, I'd like to associate myself with the
comments of my colleague from Pennsylvania, Mr. Greenwood, who
earlier stressed the need for legislation for Lyme disease,
since there's an epidemic of Lyme disease in my district. I
look forward to working with you and Mr. Greenwood to address
this disease, and I am hopeful that we can move some
legislation regarding Lyme disease through this subcommittee.
Mr. McMahon, I'm told you've been working with the Muscular
Dystrophy Association for over 30 years. What changes have you
seen in this period that give you cause for optimism? In your
written statement, you say, ``Until recently MDA managed to
fund all the research into muscular dystrophy that was
scientifically justified. That's no longer the case.'' What has
changed?
Mr. McMahon. Well, we still have all the obligations of
using the money for AIDS. You know, money goes to braces, and
wheelchairs, and elevator lifts on the side of vans, things of
that nature. So about, I would guess it's maybe a two third to
one third ratio. Last year, for example, $30 million went into
research.
Now, what has changed over the years is that we have
started to find some breakthroughs to identify where all these
gene defections are, so what we are asking here today is to
have this CARE Act 805, where there will be centers where this
can be pursued on a government basis, nothing to do with our
organization, we'll continue to do what we've been doing over
the last 50 years, but we would also ask the government to step
in and assume some of that very expensive focusing treatment in
the future.
Mr. Pitts. Thank you.
Ambassador Blackwell, I'm new to the committee, and maybe
you can educate me on this. Why have we established a separate
health care system in Indian Health Service solely for a given
racial or ethnic group? Do IHS clinics or hospitals serve
anyone who is not listed on the roles of a tribe?
Mr. Blackwell. The trust responsibility arises out of the
Commerce Clause of the Constitution, and through a recognition
of American Indian tribes as domestic sovereign nations.
Congress has been given the plenary power and the
responsibility to oversee that relationship, commonly called
the ``trust relationship.''
The matter of health care for American Indian people is one
that has arisen along with that of education and subsistence
living, placement on reservations, removal from the south to
Indian territory in Oklahoma, what is now Oklahoma, and the
various policies.
From the time of first European contact until Richard Nixon
was President, there was little glimmer of hope, and that
glimmer was called Indian Self-Determination, the Indian Self-
Determination and Education Assistance Act.
To precisely answer your question, whenever the Federal
Government--I suppose it's an embodiment in international law,
when a conqueror conquers a people, they become responsible for
the general welfare and benefit of those people, and we saw
that happen in World War II with Japan, and that seems to be
part of the American spirit that is embodied in the European
American spirit, that's embodied in the Constitution.
Mr. Pitts. Do the IHS clinics treat anyone who is not on
the roles of the Indian tribes?
Mr. Blackwell. The amount of money that is set aside for
the Indian Health Service is based on a service population.
There are those who are much better informed on this than I am,
but the service population is restricted to those people who
are members of federally recognized American Indian tribes.
Insofar as I know, in isolated instances where the Indian
Health Service facility is the only one that's available. With
your permission, I'll research that and respond to you in
writing. The limitations I would see would be the restriction--
the budget restrictions and passage of H.R. 293 would help
relieve those limitations, and I would assume in the spirit of
the new self-determination encourage alliances and business
relationships between private health care organizations, and
Indian tribes, and the Federal Government, thereby enabling in
isolated and necessary situations.
But, as a general rule, no.
Mr. Bilirakis. The gentleman's time is expired, but I think
you indicated, sir, you'd like to research that and maybe you
might advise Mr. Pitts and the committee, since it is an
outstanding question, outstanding in the sense that it's not
completely answered.
Mr. Blackwell. Thank you, and I will.
Mr. Bilirakis. Mr. Green.
Mr. Green. Thank you, Mr. Chairman, and I want to apologize
to the panel because so many of us had other things. In fact, I
was actually on the floor, I have a district in Houston, and we
have the Energy and Water Bill on the floor of the House, and
trying to make sure we have a Corps of Engineers project to
make sure we don't flood again like we did 2 weeks ago. But, I
appreciate the panel for being here, particularly, Larry
Balthazar, and like I said, I've gotten to know the family, I
guess, 3 years ago, and heard their testimony before, and I
know it's always moving.
Let me ask Mr. Balthazar, I want to thank you again for
coming and being willing to share, not only your wife and your
family's effort with this, and your son. You mentioned in your
testimony that the islet transplantation has allowed 20 people
with diabetes to stop using insulin. Can you tell us a little
bit more about this breakthrough, and it sounds like this could
be the cure, but then with a lot of diseases what may work we
find out later, but can you share with the committee some more
information about that?
Mr. Balthazar. There's one particular test that's going on,
it's called the Edmonton Protocol, and out of that we've been
able to, or scientists and researchers have been able to
isolate the beta cells within the pancreas, and transplant them
in diabetics, and allow them to live without insulin
injections. Obviously, that's a very demanding and intense
process that can only satisfy the needs of a very, very few
people, and they've been able to survive without insulin
injections for the last several years.
We can get a little more information for you in particular,
I need to be very careful with the details of that.
Mr. Green. If there's anything else on any other
suggestions. Of course, our problem often times is that we
can't keep up with some of the successes, except if we happen
to read it in the paper, whether it's juvenile diabetes, or
anything else, and so any information that you can share, any
of you can share.
Again, I appreciate you and your family for bringing this
up, and I know we can't find the cures without the resources,
and that's part of our job here, to be able to do that.
Doctor Gremillion, I noticed in your testimony on your
table, Table 3, where actually the male rate for lung cancer
was almost double. Can you tell me, in your experience, is
there a reason for that? Is it tobacco use, or is there
something else?
Mr. Gremillion. Well, recall that I'm a Tar Heel,
University of North Carolina.
Mr. Green. I understand where you are from.
Mr. Gremillion. The gap in smoking between men and women
was substantial until the 1950's, when women began to smoke at
a higher rate. Now, what we are anticipating is, as the lag
between the cigarette smoking provocation of lung cancer
catches up women will, in fact, increase their lung cancer rate
very substantially, probably over the next 10 years.
Mr. Green. That's not--I was hoping we would see it going
down for both of them instead of our females going up, but you
attribute it to mainly tobacco use, or is it some other
environmental factor? I know in your testimony you talk about
males typically are risk takers and things like that, is there
anything else other than tobacco use you can attribute that to?
Mr. Gremillion. There are some other very minor potential
causes, like radon exposure, et cetera. However, without
question, tobacco use is the provocative agent in lung cancer.
Mr. Green. Okay.
Mr. Blackwell, in your testimony or your statement, you
reference that you hope to learn more about diabetes since it
has such a disproportionate effect on certain Native American
tribes. I know that almost one in two Pima Indians in the
southwest suffer from diabetes. I also have a district that's
substantially Hispanic, and we see increased numbers for
diabetes with our Hispanic Americans. How would elevating the
Director of the Indian Health Service aid the Agency in
managing the burden of diabetes on the Native American
population?
Mr. Blackwell. It would put at least this issue among
others that are significantly important in Indian country at
the secretarial level for consideration, and policy, and
budget, and procedures, which would result in, we would hope
result, in an elevated level of care for individual Indian
people.
And, it's my observation that diabetes, that you are
absolutely correct, it's for many, many people of color,
particularly people of African descent and American Indian, but
the research that this committee controls, we would support it
totally. There's not a tribal chairman, and I feel comfortable
saying this, and I wouldn't say it very often in very many
places, but there's not a tribal--sitting tribal chairman of
any of the 352 tribes who wouldn't support more increased funds
for research on diabetes.
Mr. Green. Thank you, Mr. Chairman. I know my time has
expired, but again, I want to thank you for calling this panel
today. Obviously, it's a very broad cross section of illnesses
and diseases. I appreciate it.
Mr. Bilirakis. I thank the gentleman.
We customarily request that you respond to written
questions that have not been asked here today, and I would ask
you to respond to those questions in a timely fashion, because
it's always going to be helpful.
I would also suggest to you that the reasons why you are
here, and the reasons why we held this hearing with respect to
these specific disease issues, is because we intend to move
every one of these pieces of legislation. This does not mean
that there won't be possibly some reforming of some areas.
The funding, for the Congress to, and this is maybe not the
very popular statement to make, but for the Congress it's been
decided quite some time ago that we don't have knowledge to be
able to tell NIH, to spend X amount of dollars regarding
research on this disease, as against that disease, et cetera.
We made the decision a long time ago to try to do everything we
can to increase, to double the funding. But, we have sent
letters, I have sent letters, and we've had legislation which,
like in the case of diabetes, we would say to NIH, I consider
increased funding for diabetes research, rather than to say to
them, specifically. I just wanted you to know that.
We've had a lot of people in here, pretty powerful people,
who wanted us to increase funding for certain diseases,
Muhammad Ali for instance on Parkinson's, but are we in a
position where we should be able to tell? They know where the
close breakthroughs are. Plus, we, of course, are subject to
politics, and, yes, there must be politics, they are
everywhere, and NIH has their share of politics, but, I think
for the most part they know what they are doing in terms of
funding that should be appropriated or allocated, for a
particular disease. I just wanted you to know that.
Every one of these pieces of legislation is on the path to
coming up for a mark-up in this committee and on the floor of
the House.
Having said that, if there isn't anything further, Mr.
Brown?
Mr. Brown. No, only that we will bipartisanly move these
bills through the Congress.
Mr. Bilirakis. Yes, and we scheduled this hearing on a very
good bipartisan basis. I know that we are all grateful to all
of our staffs for working so hard.
You can imagine how much help you've been to us here. It's
just been wonderful. We appreciate particularly the volunteers,
people like Mr. McMahon, and so many others who are volunteers.
Mr. Balthazar, you are here of your own accord, and we
appreciate that story, even though it's a pretty sad one. We
are going to do the best we can.
God bless you. Thank you.
The hearing is adjourned.
[The hearing was adjourned at 3:43 p.m.]
[Additional material submitted for the record follows:]
Prepared Statement of Hon. Randy ``Duke'' Cunningham, a Representative
in Congress from the State of California
Chairman Bilirakis, Ranking Member Brown, and Members of the
Committee, I would like to thank you for holding this hearing today to
consider the various health needs of the American public. In
particular, I would like to thank you for focusing on the need to raise
awareness about men's health.
On May 10, 1972 I flew my 300th mission over North Vietnam. I shot
down three MIGs that day to become the first Ace of the Vietnam War.
Shortly after my third kill, I was hit by enemy fire and forced to
eject along with my backseat, Willie Driscoll. As we parachuted down
into enemy territory, I did not know whether I was going to live, die,
or possibly be taken as a prisoner of war. It was indeed the scariest
moment in my life--until the day my doctor looked me in the eye and
told me that I had cancer.
I am one of thousands of men who was diagnosed following a simple
prostate-specific antigen (PSA) test. During my annual examination in
the summer of 1998, my doctor noted a slight elevation in my PSA test.
He followed up with a sonogram and an MRI, neither of which revealed
the disease. It was only after a prostate biopsy that it was determined
that I had cancer. Following the diagnosis, in consultation with my
family, I decided to pursue surgery as my treatment option. I am
fortunate--early detection saved my life. My doctor was familiar with
PSA results, and I had healthcare coverage for my treatments. Early
detection and treatment meant the difference between life and death.
This year, 198,100 men will be diagnosed with prostate cancer and
31,500 will die from this terrible disease. But prostate cancer is only
a small component of the men's health crisis: men have a higher death
rate than women do for every single one of the ten leading causes of
death in this country. Life expectancy has been longer for women than
for men for several decades.
Sadly, the largest part of the problem is that men do not take
particularly good care of themselves. Only one-half of all men have
received preventative health care services in the past year. Overall,
men are three times less likely to have visited a physician in the past
year--and that's even factoring out women's prenatal visits. Men's
health needs special attention, and men need better education about the
health risks that affect them.
What can we do about this? First, we can make men's health a
priority. Just as we support public service announcements to urge women
to get regular mammograms and perform routine self exams, we must
encourage men to get regular health checkups and perform routine self
exams. Testicular cancer, which is the most common cancer in men under
35, is almost always curable if caught early enough.
Life is precious, and we want men to live as long as they can.
Because they live longer, women are in the unenviable position of
seeing their husbands, fathers, and even their sons suffer and die
prematurely. If an educational and research emphasis geared toward the
different nature of men were put in place there is no doubt that men
could also raise their life expectancy. Which of course is good news
for their wives, children and society.
We need a plan to help men make better healthcare choices, and to
give men the support, encouragement and resources they need to live
longer and healthier lives. Congress is taking notice--In 1994,
Congress established the week leading up to and including Father's Day
as National Men's Health Week. Here on the Hill, we celebrate Men's
Health Week by offering health screenings to Members of Congress and
their staff. While Men's Health Week was an important first step, there
is still much to be done to improve the health of American men. Over 70
members of Congress have joined with me this year to cosponsor the
Men's Health Act (H.R. 632).
The Men's Health Act will establish an Office of Men's Health--a
crucial step in the concerted effort to combat the problems facing
men's health. This office would be responsible for monitoring,
coordinating, and improving men's health in America, and would provide
resources to organizations providing outreach and education services.
An Office of Men's Health is needed to coordinate the fragments of
men's health awareness, prevention, and research efforts now being
conducted by federal and state governments.
The Office of Men's Health, styled after the Office of Women's
Health, will be well placed to coordinate outreach and awareness
efforts on the federal and state levels, promote preventative health
behaviors and provide a vehicle whereby researchers on men's health can
network and share information and findings. The Office of Women's
Health has done a wonderful job in recent years coordinating this type
of outreach and supporting positive women's health policies. It is my
hope that these two offices could work together, and jointly conduct
gender based efforts to eliminate the health disparities between men
and women.
Getting shot down over Vietnam was a frightening and life-changing
experience, but it does not compare to the fear that struck me when a
doctor looked me in the eye and said ``Duke Cunningham, you have
cancer.'' Early detection saved my life. The Office of Men's Health
will offer men support and resources to help them take control of their
health concerns and maybe even save their lives.
______
Prepared Statement of Hon. Gary A. Condit, a Representative in Congress
from the State of California
I'd like to thank Chairman Bilirakis and the committee for
convening this hearing on ``Advancing the Health of the American
People: Addressing Various Public Health Needs.''
Last years flu vaccine crisis displayed just how unreliable the
private distribution network for flu vaccines can be. Newspapers across
the country gave accounts of chain grocery stores selling flu vaccines
on a first come-first serve basis, while public health agencies,
doctors, hospitals, and nursing homes were placed on hold. My home
state of California, for example, waited over three months before it's
shipment of flu vaccines was completely filled. This should not happen.
While there are many explanations of what caused delays in last
years flu vaccine shipments, one thing is abundantly clear: flu vaccine
distributors put profit ahead of the health and well being of the
American people. Regardless of how smoothly this private distribution
has worked in the past, last year we caught a glimpse of what occurs
when there is a bump in the road.
For these reasons, I have introduced HR 943--the Flu Vaccine
Availability Act of 2001. This bill is designed to give the Centers for
Disease Control and Prevention the needed funds and direction to
improve the flu vaccine distribution infrastructure and ensure
distribution is equitable. This bill would direct the CDC to provide
flu vaccines to physicians and qualifying health care providers at no
charge. These vaccines would not be distributed in a haphazard manner,
and would only be available if used per CDC guidelines. These
guidelines currently target the underinsured and highest at risk
populations. Additionally, these guidelines do not permit one to charge
for CDC provided vaccine.
I am convinced, as is the American Medical Association, California
Medical Association, and American College of Physicians--American
Society of Internal Medicine that this legislation is a great step
forward to ensure flu vaccines reach those who need them most.
______
Prepared Statement of Hon. J.D. Hayworth, a Representative in Congress
from the State of Arizona
Mr. Chairman, I commend you and your distinguished committee
members for holding today's hearing on several bills relating to
various public health issues. I truly appreciate your strong leadership
in this area and look forward to working with you as we strive to
advance the health of all Americans, including Native Americans.
As co-chairman the of the Congressional Native-American Caucus, I
strongly support the efforts of our colleague George Nethercutt who I
have been honored to collaborate with on several Native American health
issues. I am pleased to support his legislation H.R. 263, which would
elevate the position of Director of the Indian Health Service (IHS) to
Assistant Secretary of Health and Human Services.
IHS is the lead agency in providing health care to the 557
federally recognized tribes in the United States. Services ranging from
facility construction to pediatrics assist approximately 1.5 million
Native American and Alaska Natives each year. The IHS currently falls
under the authority of the Public Health Service within the Department
of Health and Human Services (HHS). Today, the IHS Director is the top
administration official charged with carrying out the federal trust
responsibility for IHS, but he does not report to the HHS Secretary.
Designating the IHS Director as an Assistant Secretary of Indian
Health would afford IHS a stronger advocacy function within HHS, and
allow for increased representation during the budget process. Currently
the ability of the IHS to affect budgetary policy is limited, in part,
by the Director's inability to directly participate in budget
negotiations.
It is important to note that the Congressional Budget Office has
estimated that this proposal would have no significant effect on the
federal budget.
I look forward to working with the Chairman on this legislation and
other issues that fulfill Congress' special trust responsibility to
assure the highest possible health status for Native Americans.
______
Prepared Statement of Hon. Jim McDermott, a Representative in Congress
from the State of Washington
Mr. Chairman, I am very pleased to have the opportunity to share my
views with the Energy and Commerce Subcommittee of Health regarding the
Men's Health Act of 2001 as part of the hearing on Advancing the Health
of the American People: Addressing Various Public Health Needs.
The gender gap in life expectancy began about 80 years ago. Today,
men live on average six years less than do women. The magnitude of this
difference has existed for several decades.
There are racial differences as well. While mortality rates are
higher in general for black than white individuals, the gender gap
exists within the black race as well. That is, life expectancy is also
shorter for black men than black women.
Clearly, this is a problem. It is a problem for men, and it is a
problem for the families that they leave behind.
We don't know why or what accounts for these discrepancies. We
don't know if the same reasons are afflicting all men among all races.
We do know that men do not live as long and this problem has persisted
for decades. We do know that men are less likely than women to visit a
doctor. That is why we must establish an Office of Mens Health. This
office will do the research and find out why men are not living as
long.
Since 1990, the Office of Research on Women's Health, which I fully
supported has greatly improved the health of women throughout the
United States through the coordination of research, health care
services, and education. It is vitally important that we create a
similar office of men's health to raise awareness and promote education
about the need for screening and prevention.
Men's health needs special attention. American men need better
education about health risks that affect them. The establishment of
this office could positively change the lives of American men through
raising awareness and promoting education.
______
Prepared Statement of Hon. Collin C. Peterson, a Representative in
Congress from the State of Minnesota
Good morning. I am Collin Peterson and I represent the 7th District
of Minnesota. I'd like to thank Chairman Bilirakas and the subcommittee
for inviting me to testify today.
Representative Wicker and I introduced legislation, the Duchenne
Muscular Dystrophy (DMD) Care Act, H.R. 717. This bill is designed to
fight childhood muscular dystrophy by boosting research funding and
raising public awareness. I urge you to pass this bill on behalf of my
constituents in particular an extraordinary 9-year-old boy who has DMD.
Without your help today this boy will not live to see his early 20s.
Like many children that have DMD, his life expectancy is only into
the late teens or early 20s. Children with DMD are typically diagnosed
between the ages of 3 & 5 years when they start to show signs of slow
development of motor skills, and their legs begin to collapse without
any warning, even to themselves. There after, the disease is
characterized by progressive weakness, with a gradual deterioration of
muscle capacity, first in the legs, then in the arms, back, lungs, and
heart. Currently, the boy I know uses a motorized scooter to get around
but soon he will need a ventilator to breathe. He is the inspiration
for H.R. 717, the DMD Care Act, but I expect that members of the
Subcommittee would be inspired by the courage of any child who suffers
from this, terrible condition.
DMD is the world's most common and catastrophic form of genetic
childhood disease. Although the dystrophin gene that causes DMD was
successfully identified and isolated by medical researchers in 1987,
federal research devoted to potential treatment options or a cure since
this discovery has been minimal. Many family physicians and health care
professionals lack the knowledge and resources to detect and properly
diagnose the disease as early as possible, thus exacerbating the
progression of symptoms in cases that go undetected or misdiagnosed.
One of the barriers to progress has been the lack of federal
support committed to research efforts on muscular dystrophy. Less than
1/2000 of the NIH budget is focused on research linked to muscular
dystrophy.Our legislation will:
<bullet> Authorize three centers of excellence for DMD Research at the
National Institutes of Health
<bullet> Authorize three centers of excellence for DMD Epidemiology,
data collection, and surveillance at the Centers for Disease
Control and Prevention
<bullet> Expand collaboration activities and encourages coordination
among the National Institute of Arthritis and Musceoskeletal
and Skin Diseases, National Institute of Neurological Disorders
and Stroke, and National Institute of Childhood Diseases at NIH
on DMD research initiatives.
There is no treatment for DMD even though the dystrophin gene was
first identified over 14 years ago. The life expectancy of a child with
DMD has not changed since 1859 when it was first identified. It is time
for us to focus our efforts and target funds to DMD research at NIH and
CDC. Time is running out. Without your help thousands of children will
lose the battle against DMD.
I asked my young constituent, if he could trade places with anyone
in the world who would he be; I expected him to say a famous athlete or
movie star, but he simply answered his older brother, so he can play
football with his friends. You see his biggest wish is to be a regular
boy. Today lets do what we can to help this little boy grow up to play
football with his friends.
Mr. Chairman, members of the Subcommittee, thank you again for
inviting me to testify today on this important legislation.
______
Prepared Statement of Robert Hall, President, National Council of Urban
Indian Health
Honorable Chairman and Committee Members, my name is Robert Hall. I
am the president of the National Council of Urban Indian Health
(NCUIH). I am a member of the three affiliated tribes of North Dakota:
Grosventre, Mandan and Hidatsi. I am also the Executive Director of the
South Dakota Urban Indian Health Clinic. On behalf of NCUIH, I would
like to express our appreciation for this opportunity to address to the
Committee on the importance for the urban Indian population and
communities of elevating the position of Director of the Indian Health
Service to the status of Assistant Secretary for Indian Health.
Founded in 1998, NCUIH is the only membership organization
representing urban Indian health programs. Our programs provide a wide
range of health care and referral services in 34 cities to a population
of approximately 332,000 urban Indians.
According to the 1990 census, 58% of American Indians live in urban
areas. We expect that the 2000 census will show that over 60% of
American Indians now live in urban areas. Like their reservation
counterparts, urban Indians historically suffer from poor health and
substandard health care services.
In 1976, Congress passed the Indian Health Care Improvement Act.
The original purpose of this act, as set forth in a contemporaneous
House report, was ``to raise the status of health care for American
Indians and Alaska Natives, over a seven-year period, to a level equal
to that enjoyed by other American citizens.'' House Report No. 94-1026,
Part I, p.13 (emphasis added).
It has been twenty-five years since that commitment was made, and
eighteen years since the deadline for achieving it has passed. And yet,
Indians, whether reservation or urban, continue to occupy the lowest
rung on the health care ladder, with the poorest access to America's
vaunted health care system.
What will make a difference? First, and foremost, Indian people
need a stronger voice in the health care debate. Too often our voices
are literally drowned out by the cacophony of other health care
interests. Elevating the position of Director of Indian Health Service
to that of Assistant Secretary for Indian Health will greatly
strengthen the voice of Indian country, whether in the halls of the
HHS, the corridors of U.S. policymaking Congress, or wherever the
health care debate occurs and policy decisions are made.
When we hear that the Director of IHS cannot attend certain
meetings because of his lesser position, by formality of political
protocol, it is time for a change. Protocol should never come at the
price of common sense and the health needs of Americans. The elevation
of the status of the Director of IHS will go a long way to addressing
these very real concerns.
I would like to take this opportunity to emphasize that the entire
Indian population, both reservation and urban, is deserving, both
morally and legally, of support from the Federal government in
achieving the highest possible health status. One of the fundamental
principles of Federal Indian law is the Federal government's trust
obligation to protect American Indians. NCUIH does not believe that
this obligation stops at the reservation boundary. As much as their
reservation counterparts, urban Indians have been affected by Federal
programs and policies. Indeed, the formation of the urban Indian
community is a direct result of a number of such programs and policies,
including:
(1) the BIA relocation program, which relocated 160,000 Indians to
cities between 1953 and 1962. Today, the children,
grandchildren and great-grandchildren of these Indians are
still in the cities;
(2) the failure of Federal economic policies on reservations which has
forced many Indians to become economic refugees in the cities;
(3) the Federal policy of ``terminating'' tribes in the 1950s and
1960s, many of which have not yet been restored to recognition;
(4) The marginalization of tribal communities, such that they exist,
but are not federally recognized;
(5) Indian service in the U.S. military, which brought Indians into the
urban environment;
(6) the General Allotment Act, which resulted in many Indians losing
there lands and having to move to nearby cities and towns;
(7) court-sanctioned adoption of Indian children by non-Indian
families; and,
(8) Federal boarding schools for Indians.
Some of these federal policies were designed to force assimilation
and to breakdown tribal governments; others may have been intended, at
some misguided level, to benefit Indians, but most failed miserably.
One of the main effects of this ``course of dealing,'' however, is the
same: the creation of an urban Indian community. In the same 1976
report, the House noted that the Congress has ``. . . a responsibility
to assist . . .'' urban Indians in achieving ``. . . a life of decency
and self-sufficiency . . .'' and has acknowledged that ``. . . [i]t
is, in part, because of the failure of former Federal Indian policies
and programs on the reservations that thousands of Indians have sought
a better way of life in the cities . . .'' House Report No. 94-1026 on
Pub. Law 94-437, p. 116.
America is nowhere near the lofty goal set by the U.S. Congress in
1976, of achieving equal health care for American Indians, whether
reservation or urban. I challenge this Committee to think in terms of
that goal as it considers unquestioned need to elevate the status of
the Director of the Indian Health Service to that of Assistant
Secretary for Indian Health and, just as importantly, as it implements
its trust responsibility to American Indians.
NCUIH thanks this Committee for this opportunity to provide
testimony on the elevation of the Director of the Indian Health Service
to the status of Assistant Secretary for Indian Health.
We strongly request your support on this matter.