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



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
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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:

 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.
 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.
 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).
 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.
 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'--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', 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.1 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.2 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.3
---------------------------------------------------------------------------
    \1\ Research!America. Floridians Speak Out About Medical Research. 
February 1996: Alexandria, VA
    \2\ www.irs.gov
    \3\ http://silk.nih.gov/public/[email protected]
---------------------------------------------------------------------------
    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.4
---------------------------------------------------------------------------
    \4\ http://www.researchamerica.org/opinions/
2000polls.generalversion.html
---------------------------------------------------------------------------
    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.5 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.6 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.7 Such savings in cancer and other 
disease is reiterated by studies from economists compiled by Lasker/
Funding First.8
---------------------------------------------------------------------------
    \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
---------------------------------------------------------------------------
    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.'' 9 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.
---------------------------------------------------------------------------
    \9\ http://www.nih.gov/about/investments.htm
---------------------------------------------------------------------------
    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.10 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.
---------------------------------------------------------------------------
    \10\ http://www.researchamerica.org/programs/pri/roper.html
---------------------------------------------------------------------------
    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)
------------------------------------------------------------------------
                                                                     %
------------------------------------------------------------------------
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:

 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.
 Assist a system that obviously needs attention in providing 
        more effective and more sufficient health care to American 
        Indians and Alaska natives.
 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: $185,000,000; Prostate Cancer 
program (no screening): $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:

 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.
 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.
 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.
 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.
 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:

 Authorize three centers of excellence for DMD Research at the 
        National Institutes of Health
 Authorize three centers of excellence for DMD Epidemiology, 
        data collection, and surveillance at the Centers for Disease 
        Control and Prevention
 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.
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