[Congressional Record Volume 147, Number 125 (Monday, September 24, 2001)]
[House]
[Pages H5955-H5959]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




    MUSCULAR DYSTROPHY COMMUNITY ASSISTANCE, RESEARCH AND EDUCATION 
                           AMENDMENTS OF 2001

  Mr. BILIRAKIS. Mr. Speaker, I move to suspend the rules and pass the 
bill (H.R. 717) to amend the Public Health Service Act to provide for 
research and services with respect to Duchenne muscular dystrophy, as 
amended.
  The Clerk read as follows:

                                H.R. 717

       Be it enacted by the Senate and House of Representatives of 
     the United States of America in Congress assembled,

     SECTION 1. SHORT TITLE.

       This Act may be cited as the ``Muscular Dystrophy Community 
     Assistance, Research and Education Amendments of 2001'', or 
     the ``MD-CARE Act''.

     SEC. 2. FINDINGS.

       Congress makes the following findings:
       (1) Of the childhood muscular dystrophies, Duchenne 
     Muscular Dystrophy (DMD) is the world's most common and 
     catastrophic form of genetic childhood disease, and is 
     characterized by a rapidly progressive muscle weakness that 
     almost always results in death, usually by 20 years of age.
       (2) Duchenne muscular dystrophy is genetically inherited, 
     and mothers are the carriers in approximately 70 percent of 
     all cases.
       (3) If a female is a carrier of the dystrophin gene, there 
     is a 50 percent chance per birth that her male offspring will 
     have Duchenne muscular dystrophy, and a 50 percent chance per 
     birth that her female offspring will be carriers.
       (4) Duchenne is the most common lethal genetic disorder of 
     childhood worldwide, affecting approximately 1 in every 3,500 
     boys worldwide.
       (5) Children with muscular dystrophy exhibit extreme 
     symptoms of weakness, delay in walking, waddling gait, 
     difficulty in climbing stairs, and progressive mobility 
     problems often in combination with muscle hypertrophy.
       (6) Other forms of muscular dystrophy affecting children 
     and adults include Becker, limb girdle, congenital, 
     facioscapulohumeral, myotonic, oculopharyngeal, distal, and 
     Emery-Dreifuss muscular dystrophies.
       (7) Myotonic muscular dystrophy (also known as Steinert's 
     disease and dystrophia myotonica) is the second most 
     prominent form of muscular dystrophy and the type most 
     commonly found in adults. Unlike any of the other muscular 
     dystrophies, the muscle weakness is accompanied by myotonia 
     (delayed relaxation of muscles after contraction) and by a 
     variety of abnormalities in addition to those of muscle.
       (8) Facioscapulohumeral muscular dystrophy (referred to in 
     this section as ``FSHD'') is a neuromuscular disorder that is 
     inherited genetically and has an estimated frequency of 1 in 
     20,000. FSHD, affecting between 15,000 to 40,000 persons, 
     causes a progressive and sever loss of skeletal muscle 
     gradually bringing weakness and reduced mobility. Many 
     persons with FSHD become severely physically disabled and 
     spend many decades in a wheelchair.
       (9) FSHD is regarded as a novel genetic phenomenon 
     resulting from a crossover of subtelomeric DNA and may be the 
     only human disease caused by a deletion-mutation.
       (10) Each of the muscular dystrophies, though distinct in 
     progressivity and severity of symptoms, have a devastating 
     impact on tens of thousands of children and adults throughout 
     the United States and worldwide and impose severe physical 
     and economic burdens on those affected.
       (11) Muscular dystrophies have a significant impact on 
     quality of life--not only for the individual who experiences 
     its painful symptoms and resulting disability, but also for 
     family members and caregivers.
       (12) Development of therapies for these disorders, while 
     realistic with recent advances in research, is likely to 
     require costly investments and infrastructure to support gene 
     and other therapies.
       (13) There is a shortage of qualified researchers in the 
     field of neuromuscular research.
       (14) 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 progressiveness of symptoms in cases that go undetected 
     or misdiagnosed.
       (15) There is a need for efficient mechanisms to translate 
     clinically relevant findings in muscular dystrophy research 
     from basic science to applied work.
       (16) Educating the public and health care community 
     throughout the country about this devastating disease is of 
     paramount importance and is in every respect in the public 
     interest and to the benefit of all communities.

     SEC. 3. EXPANSION, INTENSIFICATION, AND COORDINATION OF 
                   ACTIVITIES OF NATIONAL INSTITUTES OF HEALTH 
                   WITH RESPECT TO RESEARCH ON MUSCULAR DYSTROPHY.

       Part A of title IV of the Public Health Service Act (42 
     U.S.C. 281 et seq.) is amended by adding at the end the 
     following:

     ``SEC. 404E. MUSCULAR DYSTROPHY; INITIATIVE THROUGH DIRECTOR 
                   OF NATIONAL INSTITUTES OF HEALTH.

       ``(a) Expansion, Intensification, and Coordination of 
     Activities.--
       ``(1) In general.--The Director of NIH, in coordination 
     with the Directors of the National Institute of Neurological 
     Disorders and Stroke, the National Institute of Arthritis and 
     Muscoskeletal and Skin Diseases, the National Institute of 
     Child Health and Human Development, and the other national 
     research institutes as appropriate, shall expand and 
     intensify programs of such Institutes with respect to 
     research and related activities concerning various forms of 
     muscular dystrophy, including Duchenne, myotonic, 
     facioscapulohumeral muscular dystrophy (referred to in this 
     section as `FSHD') and other forms of muscular dystrophy.
       ``(2) Coordination.--The Directors referred to in paragraph 
     (1) shall jointly coordinate the

[[Page H5956]]

     programs referred to in such paragraph and consult with the 
     Muscular Dystrophy Interagency Coordinating Committee 
     established under section 6 of the MD-CARE Act.
       ``(3) Allocations by director of nih.--The Director of NIH 
     shall allocate the amounts appropriated to carry out this 
     section for each fiscal year among the national research 
     institutes referred to in paragraph (1).
       ``(b) Centers of Excellence.--
       ``(1) In general.--The Director of NIH shall award grants 
     and contracts under subsection (a)(1) to public or nonprofit 
     private entities to pay all or part of the cost of planning, 
     establishing, improving, and providing basic operating 
     support for centers of excellence regarding research on 
     various forms of muscular dystrophy.
       ``(2) Research.--Each center under paragraph (1) shall 
     supplement but not replace the establishment of a 
     comprehensive research portfolio in all the muscular 
     dystrophies. As a whole, the centers shall conduct basic and 
     clinical research in all forms of muscular dystrophy 
     including early detection, diagnosis, prevention, and 
     treatment, including the fields of muscle biology, 
     genetics, noninvasive imaging, genetics, pharmacological 
     and other therapies.
       ``(3) Coordination of centers; reports.--The Director of 
     NIH--
       ``(A) shall, as appropriate, provide for the coordination 
     of information among centers under paragraph (1) and ensure 
     regular communication between such centers; and
       ``(B) shall require the periodic preparation of reports on 
     the activities of the centers and the submission of the 
     reports to the Director.
       ``(4) Organization of centers.--Each center under paragraph 
     (1) shall use the facilities of a single institution, or be 
     formed from a consortium of cooperating institutions, meeting 
     such requirements as may be prescribed by the Director of 
     NIH.
       ``(5) Duration of support.--Support for a center 
     established under paragraph (1) may be provided under this 
     section for a period of not to exceed 5 years. Such period 
     may be extended for 1 or more additional periods not 
     exceeding 5 years if the operations of such center have been 
     reviewed by an appropriate technical and scientific peer 
     review group established by the Director of NIH and if such 
     group has recommended to the Director that such period should 
     be extended.
       ``(c) Facilitation of Research.--The Director of NIH shall 
     provide for a program under subsection (a)(1) under which 
     samples of tissues and genetic materials that are of use in 
     research on muscular dystrophy are donated, collected, 
     preserved, and made available for such research. The program 
     shall be carried out in accordance with accepted scientific 
     and medical standards for the donation, collection, and 
     preservation of such samples.
       ``(d) Coordinating Committee.--
       ``(1) In general.--The Secretary shall establish the 
     Muscular Dystrophy Coordinating Committee (referred to in 
     this section as the `Coordinating Committee') to coordinate 
     activities across the National Institutes and with other 
     Federal health programs and activities relating to the 
     various forms of muscular dystrophy.
       ``(2) Composition.--The Coordinating Committee shall 
     consist of not more than 15 members to be appointed by the 
     Secretary, of which--
       ``(A) \2/3\ of such members shall represent governmental 
     agencies, including the directors or their designees of each 
     of the national research institutes involved in research with 
     respect to muscular dystrophy and representatives of all 
     other Federal departments and agencies whose programs involve 
     health functions or responsibilities relevant to such 
     diseases, including the Centers for Disease Control and 
     Prevention, the Health Resources and Services Administration 
     and the Food and Drug Administration and representatives of 
     other governmental agencies that serve children with muscular 
     dystrophy, such as the Department of Education; and
       ``(B) \1/3\ of such members shall be public members, 
     including a broad cross section of persons affected with 
     muscular dystrophies including parents or legal guardians, 
     affected individuals, researchers, and clinicians.

     Members appointed under subparagraph (B) shall serve for a 
     term of 3 years, and may serve for an unlimited number of 
     terms if reappointed.
       ``(3) Chair.--
       ``(A) In general.--With respect to muscular dystrophy, the 
     Chair of the Coordinating Committee shall serve as the 
     principal advisor to the Secretary, the Assistant Secretary 
     for Health, and the Director of NIH, and shall provide advice 
     to the Director of the Centers for Disease Control and 
     Prevention, the Commissioner of Food and Drugs, and to the 
     heads of other relevant agencies. The Coordinating Committee 
     shall select the Chair for a term not to exceed 2 years.
       ``(B) Appointment.--The Chair of the Committee shall be 
     appointed by and be directly responsible to the Secretary.
       ``(4) Administrative support; terms of service; other 
     provisions.--The following shall apply with respect to the 
     Coordinating Committee:
       ``(A) The Coordinating Committee shall receive necessary 
     and appropriate administrative support from the Department of 
     Health and Human Services.
       ``(B) The Coordinating Committee shall meet as appropriate 
     as determined by the Secretary, in consultation with the 
     chair.
       ``(e) Plan for HHS Activities.--
       ``(1) In general.--Not later than 1 year after the date of 
     enactment of this section, the Coordinating Committee shall 
     develop a plan for conducting and supporting research and 
     education on muscular dystrophy through the national research 
     institutes and shall periodically review and revise the plan. 
     The plan shall--
       ``(A) provide for a broad range of research and education 
     activities relating to biomedical, epidemiological, 
     psychosocial, and rehabilitative issues, including studies of 
     the impact of such diseases in rural and underserved 
     communities;
       ``(B) identify priorities among the programs and activities 
     of the National Institutes of Health regarding such diseases; 
     and
       ``(C) reflect input from a broad range of scientists, 
     patients, and advocacy groups.
       ``(2) Certain elements of plan.--The plan under paragraph 
     (1) shall, with respect to each form of muscular dystrophy, 
     provide for the following as appropriate:
       ``(A) Research to determine the reasons underlying the 
     incidence and prevalence of various forms of muscular 
     dystrophy.
       ``(B) Basic research concerning the etiology and genetic 
     links of the disease and potential causes of mutations.
       ``(C) The development of improved screening techniques.
       ``(D) Basic and clinical research for the development and 
     evaluation of new treatments, including new biological 
     agents.
       ``(E) Information and education programs for health care 
     professionals and the public.
       ``(f) Reports to Congress.--The Coordinating Committee 
     shall biennially submit to the Committee on Energy and 
     Commerce of the House of Representatives, and the Committee 
     on Health, Education, Labor, and Pensions of the Senate, a 
     report that describes the research, education, and other 
     activities on muscular dystrophy being conducted or supported 
     through the Department of Health and Human Services. Each 
     such report shall include the following:
       ``(1) The plan under subsection (e)(1) (or revisions to the 
     plan, as the case may be).
       ``(2) Provisions specifying the amounts expended by the 
     Department of Health and Human Services with respect to 
     various forms of muscular dystrophy, including Duchenne, 
     myotonic, FSHD and other forms of muscular dystrophy.
       ``(3) Provisions identifying particular projects or types 
     of projects that should in the future be considered by the 
     national research institutes or other entities in the field 
     of research on all muscular dystrophies.
       ``(g) Public Input.--The Secretary shall, under subsection 
     (a)(1), provide for a means through which the public can 
     obtain information on the existing and planned programs and 
     activities of the Department of Health and Human Services 
     with respect to various forms of muscular dystrophy and 
     through which the Secretary can receive comments from the 
     public regarding such programs and activities.
       ``(h) Authorization of Appropriations.--For the purpose of 
     carrying out this section, there are authorized to be 
     appropriated such sums as may be necessary for each of fiscal 
     years 2002 through 2006. The authorization of appropriations 
     established in the preceding sentence is in addition to any 
     other authorization of appropriations that is available for 
     conducting or supporting through the National Institutes of 
     Health research and other activities with respect to muscular 
     dystrophy.''.

     SEC. 4. DEVELOPMENT AND EXPANSION OF ACTIVITIES OF CENTERS 
                   FOR DISEASE CONTROL AND PREVENTION WITH RESPECT 
                   TO EPIDEMIOLOGICAL RESEARCH ON MUSCULAR 
                   DYSTROPHY.

       Part B of title III of the Public Health Service Act (42 
     U.S.C. 243 et seq.) is amended by inserting after section 
     317P the following:

     ``SEC. 317Q. SURVEILLANCE AND RESEARCH REGARDING MUSCULAR 
                   DYSTROPHY.

       ``(a) In General.--The Secretary, acting through the 
     Director of the Centers for Disease Control and Prevention, 
     may award grants and cooperative agreements to public or 
     nonprofit private entities (including health departments of 
     States and political subdivisions of States, and including 
     universities and other educational entities) for the 
     collection, analysis, and reporting of data on Duchenne and 
     other forms of muscular dystrophy. In making such awards, the 
     Secretary may provide direct technical assistance in lieu of 
     cash.
       ``(b) National Muscular Dystrophy Epidemiology Program.--
     The Secretary, acting through the Director of the Centers for 
     Disease Control and Prevention, may award grants to public or 
     nonprofit private entities (including health departments of 
     States and political subdivisions of States, and including 
     universities and other educational entities) for the purpose 
     of carrying out epidemiological activities regarding Duchenne 
     and other forms of muscular dystrophies, including collecting 
     and analyzing information on the number, incidence, 
     correlates, and symptoms of cases. In carrying out the 
     preceding sentence, the Secretary shall provide for a 
     national surveillance program. In making awards under this 
     subsection, the Secretary may provide direct technical 
     assistance in lieu of cash.
       ``(c) Coordination With Centers of Excellence.--The 
     Secretary shall ensure that epidemiological information under 
     subsections (a) and (b) is made available to centers of 
     excellence supported under section 404E(b) by the Director of 
     the National Institutes of Health.
       ``(d) Authorization of Appropriations.--There are 
     authorized to be appropriated such sums as may be necessary 
     to carry out this section.''.

     SEC. 5. INFORMATION AND EDUCATION.

       (a) In General.--The Secretary of Health and Human Services 
     (referred to in this Act as the ``Secretary'') shall 
     establish and implement 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, medical students, and other health 
     professionals who provide care for patients with muscular 
     dystrophy.

[[Page H5957]]

       (b) Stipends.--The Secretary may use amounts made available 
     under this section provides stipends for health professionals 
     who are enrolled in training programs under this section.
       (c) Authorization of Appropriations.--There are authorized 
     to be appropriated such sums as may be necessary to carry out 
     this section.

     SEC. 6. REPORT TO CONGRESS.

       Not later than January 1, 2003, and each January 1 
     thereafter, the Secretary shall prepare and submit to the 
     appropriate committees of Congress, a report concerning the 
     implementation of this Act and the amendments made by this 
     Act.

  The SPEAKER pro tempore. Pursuant to the rule, the gentleman from 
Florida (Mr. Bilirakis) and the gentleman from Ohio (Mr. Strickland) 
each will control 20 minutes.
  The Chair recognizes the gentleman from Florida (Mr. Bilirakis).


                             General Leave

  Mr. BILIRAKIS. Mr. Speaker, I ask unanimous consent that all Members 
may have 5 legislative days within which to revise and extend their 
remarks and insert extraneous material on H.R. 717.
  The SPEAKER pro tempore. Is there objection to the request of the 
gentleman from Florida?
  There was no objection.
  Mr. BILIRAKIS. Mr. Speaker, I yield myself such time as I may 
consume.
  Mr. Speaker, I rise today in support of H.R. 717, the Duchenne 
Muscular Dystrophy Childhood Assistance Research and Education 
Amendments of 2001 which will help find cures for all forms of muscular 
dystrophy; and I commend at the outset the gentleman from Mississippi 
(Mr. Wicker) for writing this bill and for continuing to push for its 
movement through the process.
  Mr. Speaker, the Subcommittee on Health of the Committee on Energy 
and Commerce held an important hearing on this issue where Ed McMahon 
spoke in favor of the legislation. I believe that every dollar invested 
in medical research 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 muscular dystrophy.
  While we live in a modern world, children with DMD are powerless. 
Boys die before reaching 20, before reaching adulthood, before 
experiencing life. Duchenne muscular dystrophy is the most common 
lethal childhood genetic disorder in the world, affecting 1 in 2,328 
male newborns worldwide, according to a 1997 German study.
  The disease may be inherited 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 gene mutation.
  Children who are born with DMD follow a predictable clinical course. 
Young children develop difficulties walking and begin falling due to 
muscle weakness, and by 8 to 10 years, the muscle weakness has 
progressed to the point where most children must rely on wheelchairs. 
By late teens, most DMD children have succumbed to their disease, 
usually as victims of respiratory failure. The diagnosis 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 burdens for the family and for 
society.
  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 four key steps toward 
improving the Federal commitment to muscular dystrophy:
  First, increased coordination. Building on 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.
  Secondly, it creates Centers of Excellence at NIH in order to ensure 
a focused research effort of muscular dystrophy. H.R. 717 establishes 
Centers of Excellence at NIH to support and expand clinical research on 
various forms of muscular dystrophy, including investigations into the 
diagnosis, early detection, prevention, control, and adequate treatment 
of various forms of DMD.
  It also establishes a national muscular dystrophy surveillance 
program granting to public and nonprivate entities the implementation 
of the National Muscular Dystrophy Surveillance Program.
  And fourth, it allows for dissemination of education to medical 
professionals and promotion of public awareness.
  Mr. Speaker, the advances made over the course of the last century 
cannot have been predicted by the most farsighted observers. It is 
equally difficult to anticipate the significant gains from further 
medical research, particularly in the area of muscular dystrophy.
  Mr. Speaker, I urge all of my colleagues to join the Parent Project 
on Duchenne Muscular Dystrophy, the Muscular Dystrophy Association, and 
Mr. Ed McMahon who spoke so eloquently in our subcommittee hearing in 
defense of all of the children suffering from this disease in support 
of H.R. 717.
  Mr. Speaker, I reserve the balance of my time.
  Mr. STRICKLAND. Mr. Speaker, I yield myself such time as I may 
consume.
  Mr. Speaker, I rise in support of this bill. I am glad that the House 
is considering Muscular Dystrophy Community Assistance, Research and 
Education Amendments of 2001, and I would like to thank the gentleman 
from Mississippi (Mr. Wicker) and my other colleagues on the Committee 
on Energy and Commerce for their strong bipartisan efforts to work in 
the passage of this legislation. My understanding is there are 
currently over 300 cosponsors in the House.
  Mr. Speaker, the muscular dystrophies are a group of genetic diseases 
that cause the progressive weakness of skeletal muscles. Duchenne 
muscular dystrophy is the most common of the childhood muscular 
dystrophies, and is the world's most lethal genetic childhood disease.
  The disease is characterized by rapidly progressive and painful 
muscle weakness that almost always results in death, usually by 20 
years of age. Duchenne muscular dystrophy primarily affects boys with 
one in every 3,500 boys worldwide affected.
  A woman who is a genetic carrier of the disease has a 50 percent 
chance of passing it on to her son, and a 50 percent chance that her 
daughter will also be a carrier. Currently there are no specific 
treatments, although therapies to improve the quality of life of those 
suffering from muscular dystrophy can be used.
  Scientists are working to seek ways to increase understanding of 
muscular dystrophy and its causes, develop better therapies, and 
ultimately find ways to prevent and cure the disorder. However, 
research into muscular dystrophy is expensive, and requires an 
investment in gene therapies.
  H.R. 717 will focus funding within the National Institutes of Health 
on muscular dystrophy, expanding research programs, and creating 
Centers of Excellence that will conduct basic and clinical research 
into Duchenne and other muscular dystrophies. H.R. 717 also directs the 
Centers for Disease Control and Prevention to collect, analyze, and to 
report data about Duchenne and other types of muscular dystrophy. This 
type of close surveillance and research is critical if we are to truly 
understand this terrible disease and how we can best treat it or even 
cure it.
  In addition, the funding for the CDC will help to coordinate the 
Institutes of Health and CDC's research efforts.

                              {time}  1600

  Finally, the bill will create an educational program for family 
physicians who may fail to recognize the symptoms of muscular 
dystrophy. Identifying the disease early will ensure that treatment 
programs will be more effective. Hopefully, strides in gene research 
will make early identification easier and treatment more effective.
  H.R. 717 takes important steps toward a cure for muscular dystrophy. 
Again, I commend my colleagues for their efforts on this legislation. 
For all of those families who have prematurely lost a son or daughter 
because of muscular dystrophy, this bill provides some hope that 
science will find a cure so that others do not suffer the same loss.
  Mr. Speaker, I reserve the balance of my time.

[[Page H5958]]

  Mr. BILIRAKIS. Mr. Speaker, I yield such time as he may consume to 
the gentleman from Mississippi (Mr. Wicker), the gentleman responsible 
for this legislation, who did a fantastic job on it and I commend him 
for it.
  Mr. WICKER. Let me just say, Mr. Speaker, that it is indeed 
encouraging to see this House of Representatives coming together in 
support of H.R. 717, legislation which, as the gentleman from Florida 
said, is designed to increase the Federal research commitment to combat 
muscular dystrophy. I want to thank the leadership of the Committee on 
Energy and Commerce, the gentleman from Louisiana (Mr. Tauzin) and the 
gentleman from Florida (Mr. Bilirakis) and the gentleman from Michigan 
(Mr. Dingell) and the gentleman from Ohio (Mr. Brown), for their 
efforts in moving this bill through their committee and to the floor. I 
also want to thank my friend from Ohio for his kind comments about this 
legislation. And I want to thank the 310 cosponsors of this legislation 
who have demonstrated the broad bipartisan support that this bill 
enjoys.
  In addition, I want to thank the parents of the young boys who suffer 
from Duchenne muscular dystrophy. Make no mistake about it, the parents 
and families of Duchenne boys have been the driving force in moving 
this bill and calling attention to this dreadful disease, people like 
Darlene Oliver of Tupelo, Mississippi, who has been tireless in her 
efforts. These parents, who are sitting around the country today on 
pins and needles as we debate this legislation, through their letters 
and visits to Members of Congress, have been instrumental in getting 
this bill to the House floor today.
  I have received a flood of letters, e-mails, and calls from parents 
of DMD children from all over the country, often accompanied by 
pictures of their little boys. Even those who have already experienced 
the sorrow of losing a child have written to express their gratitude 
for this bill. A few days ago, I received a card from a woman in 
Raleigh, North Carolina. In part she writes, and I quote, ``You can't 
possibly know how much your support means to us, Andrew's family. Our 
son will not benefit from your largesse, but countless children will. 
You have given hope to so many.''
  Mr. Speaker, through the work of NIH and CDC, the Federal Government 
has given hope to millions of Americans who suffer from a wide variety 
of diseases, such as cancer, cardiovascular disease, diabetes and 
arthritis. The research done at NIH and sponsored by NIH at 
universities across America is on the cutting edge of modern science. 
This is an arena where the Government must play an important role to 
ensure that the cures of tomorrow are available to all. Along with many 
of my colleagues, I have been proud to support the increases which are 
necessary to double the funding of NIH over a period of 5 years.
  However, not all who suffer from disease have been able to realize 
the promise of NIH research. Duchenne muscular dystrophy, as the 
chairman pointed out, is the most common and most lethal childhood 
genetic disorder. Yet less than one one-thousandth of the NIH budget is 
focused on research linked to muscular dystrophy. Although the 
dystrophin gene which causes DMD was successfully identified and 
isolated by medical researchers in 1987, Federal research 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, allowing the disease to progress unchecked in cases 
that are undetected or misdiagnosed.
  Mr. Speaker, during the August recess, while I was traveling across 
my district like so many of my colleagues, I met Walter and Inez Ewing 
of Prairie, Mississippi, who have lost five of their eight children to 
this disease. Each of these boys died at a young age, devastating the 
family and friends in Monroe County, Mississippi. It is my hope that 
through the enactment of this legislation and with continued increased 
appropriations for the NIH and CDC, we can make great strides against 
this killer of our children and we can give more hope to the children 
and their parents who suffer from its effects.
  I urge my colleagues to support this legislation.
  Mrs. BIGGERT. Mr. Speaker, I rise today in strong support of H.R. 
717, the Duchenne Muscular Dystrophy Childhood Assistance, Research and 
Education Amendments Act. This legislation will provide much needed 
resources for research on this terrible disease.
  Duchenne Muscular Dystrophy primarily, affects boys, and is usually 
discovered during their toddler or preschool years. Nearly all children 
with DMD lose the ability to walk sometime between the ages of 7 and 
12.
  DMD is a truly devastating disease for those who have to live with it 
every day, like the DeGrenier family in my District. Their son has this 
horrible disease, and they have been tireless in their fight to gain 
exposure for this issue.
  The most tragic part of DMD is that there is so little known about 
the disease and no known treatment for it. Treatment has traditionally 
been aimed at managing the sumptoms in an effort to optimize the 
quality of life. The medication required just to treat the sypmtoms is 
often too expensive for families to handle.
  Research is what is desperately needed to fight this deadly disease. 
This bill will provide a significant step in addressing the lack of 
knowledge about DMD. By expanding the programs at the National 
Institute of Neurological Disorders and Stroke, as well as establishing 
research centers of excellence and authorizing research grants, we can 
start to find out more about DMD and give hope to families like the 
DeGreniers.
  I urge my Colleagues to support this importannt legislation.
  Mr. EHRLICH. Mr. Speaker, I rise today in strong support of H.R. 717, 
the Duchenne Muscular Dystrophy (DMD) Childhood Assistance, Research, 
and Education (CARE) Act. As a cosponsor of H.R. 717, I am extremely 
pleased this bill, which focuses federal resources on researching DMD, 
is being considered by the House of Representatives today.
  DMD is the most common form of genetic childhood disease, affecting 
approximately one in every 3,500 boys worldwide. 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 $20.3 billion allocated for the National 
Institutes of Health (NIH) during FY 2001, only a few million dollars 
are 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, the 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.
  Further, I want to thank the leadership of the Energy and Commerce 
Committee and its Health Subcommittee for expediting this matter to 
ensure that the federal government acts as quickly as possible to 
combat DMD. Finally, 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.
  Mr. UPTON. Mr. Speaker, I am very pleased that you have called up for 
our consideration this evening H.R. 717, the Muscular Dystrophy 
Community Assistance, Research, and Education Amendments of 2001. I am 
an original cosponsor of this legislation designed to substantially 
strengthen support at the national Institutes of Health for research on 
Duchenne and several other types of muscular dystrophy, coordinate that 
research across federal agencies, and translate discoveries in the lab 
into improved patient care.
  I have seen the human face of Duchenne muscular dystrophy and the 
toll that it takes on children and families. Some time ago, I had the 
opportunity to visit with Don and Joyce Carpenter of Kalamazoo, 
Michigan, and their courageous son Ben, who suffers from Duchenne 
muscular dystrophy. From them I learned that Duchenne muscular 
dystrophy is the most common and the most catastrophic form of genetic 
childhood disease. Sadly, it generally kills its victims in their late 
teens or early 20s.
  For decades, the only drug treatment known to somewhat alter the 
course of the disease is the use of steroids--whose serious side 
effects are well known. We've simply got to do better. We have to find 
a way to prevent this devastating disorder in the first place--perhaps 
through the promise of gene therapy. And until we learn how to prevent 
it, we've got to learn how to treat it more effectively.

[[Page H5959]]

  This legislation has strong bipartisan support. It has 310 cosponsors 
and was unanimously approved by both by the Health Subcommittee and the 
full Energy and Commerce Committee.
  I call on my colleagues to join me in supporting this legislation. 
What we are doing here this evening is giving hope to Don and Joyce and 
Ben Carpenter and many others who suffer from Duchenne and other 
devastating forms of muscular dystrophy in this nation and across the 
world. We can work miracles when we really try.
  Mr. PETERSON of Minnesota. Mr. Speaker, I rise today in support of 
H.R. 717, the Muscular Dystrophy Community Assistance, Research and 
Education Act.
  Representative Wicker and I introduced H.R. 717, after being inspired 
by testimonies from our constituents. I am inspired by an extraordinary 
9-year-old boy, Jacob, who has Duchenne Muscular Dystrophy.
  For those of you who don't know about Duchenne Muscular Dystrophy: 
Duchenne is typically diagnosed in boys between the ages of 3 and 5 
years; 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; and children affected by Duchenne 
typically do not live to see their 20's
  Currently, Jacob uses a motorized scooter to get around, but soon he 
will need a ventilator to breathe. There is no treatment for Duchenne 
Muscular Dystrophy. The life expectancy of a child with Duchenne has 
not changed since 1859 when it was first identified. It is time for us 
to focus our efforts and target funds to Muscular Dystrophy research at 
NIH and CDC.
  H.R. 717, will fight childhood muscular dystrophy by boosting 
research funding and raising public awareness. Less than 1/2000 of the 
NIH budget is focused on research linked to Muscular Dystrophy. Time is 
running out.
  I asked Jacob, 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. I hope all of you are as inspired as I am by 
the courage of Jacob and other children who suffer from this, terrible 
disease.
  I urge you to support H.R. 717.
  Mr. STRICKLAND. Mr. Speaker, I yield back the balance of my time.
  Mr. BILIRAKIS. Mr. Speaker, I have no further requests for time, and 
I yield back the balance of my time.
  The SPEAKER pro tempore (Mr. Miller of Florida). The question is on 
the motion offered by the gentleman from Florida (Mr. Bilirakis) that 
the House suspend the rules and pass the bill, H.R. 717, as amended.
  The question was taken.
  The SPEAKER pro tempore. In the opinion of the Chair, two-thirds of 
those present have voted in the affirmative.
  Mr. BILIRAKIS. Mr. Speaker, on that I demand the yeas and nays.
  The yeas and nays were ordered.
  The SPEAKER pro tempore. Pursuant to clause 8 of rule XX and the 
Chair's prior announcement, further proceedings on this motion will be 
postponed.

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