[Congressional Record Volume 160, Number 119 (Monday, July 28, 2014)]
[House]
[Pages H6933-H6935]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




PAUL D. WELLSTONE MUSCULAR DYSTROPHY COMMUNITY ASSISTANCE, RESEARCH AND 
                      EDUCATION AMENDMENTS OF 2014

  Mr. BURGESS. Mr. Speaker, I move to suspend the rules and pass the 
bill (H.R. 594) to reauthorize and extend the Paul D. Wellstone 
Muscular Dystrophy Community Assistance, Research, and Education 
Amendments of 2008, as amended.
  The Clerk read the title of the bill.
  The text of the bill is as follows:

                                H.R. 594

       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 ``Paul D. Wellstone Muscular 
     Dystrophy Community Assistance, Research and Education 
     Amendments of 2014''.

     SEC. 2. INITIATIVE THROUGH THE DIRECTOR OF THE NATIONAL 
                   INSTITUTES OF HEALTH.

       Section 404E of the Public Health Service Act (42 U.S.C. 
     283g) is amended--
       (1) in subsection (a)(1)--
       (A) by striking ``Muscoskeletal'' and inserting 
     ``Musculoskeletal''; and
       (B) by inserting ``Becker, congenital muscular dystrophy, 
     limb-girdle muscular dystrophy,'' after ``Duchenne,'';
       (2) in subsection (b)--
       (A) in paragraph (2)--
       (i) by striking ``genetics,'' at the second place it 
     appears; and
       (ii) by inserting ``cardiac and pulmonary function, and'' 
     after ``imaging,''; and
       (B) in paragraph (3), by inserting ``and sharing of data'' 
     after ``regular communication'';
       (3) in subsection (d)--
       (A) in paragraph (2)--
       (i) in the matter preceding subparagraph (A), by striking 
     ``15'' and inserting ``18''; and
       (ii) in subparagraph (A)--

       (I) by striking ``and the Food and Drug Administration'' 
     and inserting ``, the Food and Drug Administration, and the 
     Administration for Community Living'';
       (II) by inserting ``and adults'' after ``children''; and
       (III) by striking ``such as the Department of Education'' 
     and inserting ``including the Department of Education and the 
     Social Security Administration''; and

       (B) in paragraph (4)(B), by inserting ``, but shall meet no 
     fewer than two times per calendar year'' before the period; 
     and
       (4) in subsection (e)--
       (A) in paragraph (1)--
       (i) in the matter preceding subparagraph (A), by striking 
     ``through the national research institutes'' and inserting 
     ``through the agencies represented on the Coordinating 
     Committee pursuant to subsection (d)(2)(A)''; and
       (ii) in subparagraph (A)--

       (I) by inserting ``public services,'' before ``and 
     rehabilitative issues''; and
       (II) by inserting ``, studies to demonstrate the cost-
     effectiveness of providing independent living resources and 
     support to patients with various forms of muscular dystrophy, 
     and studies to determine optimal clinical care interventions 
     for adults with various forms of muscular dystrophy'' after 
     ``including studies of the impact of such diseases in rural 
     and underserved communities''; and

       (B) in paragraph (2)(D), by inserting after ``including new 
     biological agents'' the following: ``and new clinical 
     interventions to improve the health of those with muscular 
     dystrophy''.

     SEC. 3. SURVEILLANCE AND RESEARCH REGARDING MUSCULAR 
                   DYSTROPHY.

       The second sentence of section 317Q(b) of the Public Health 
     Service Act (42 U.S.C. 247b-18(b)) is amended by inserting 
     before the period the following: ``and, to the extent 
     possible, ensure that data be representative of all affected 
     populations and shared in a timely manner''.

     SEC. 4. INFORMATION AND EDUCATION.

       Section 5(c) of the Muscular Dystrophy Community 
     Assistance, Research and Education Amendments of 2001 (42 
     U.S.C. 247b-19(c)) is amended--
       (1) in paragraph (2)--
       (A) by inserting ``for pediatric and adult patients, 
     including acute care considerations,'' after ``issuance of 
     care considerations'';
       (B) by inserting ``various'' before ``other forms of 
     muscular dystrophy''; and
       (C) by striking ``and'' at the end;
       (2) by redesignating paragraph (3) as paragraph (4);
       (3) by inserting after paragraph (2) the following:
       ``(3) in developing and updating care considerations under 
     paragraph (2), incorporate strategies specifically responding 
     to the findings of the national transitions survey of 
     minority, young adult, and adult communities of muscular 
     dystrophy patients; and''; and
       (4) in paragraph (4), as redesignated, by inserting 
     ``various'' before ``other forms of muscular dystrophy''.

  The SPEAKER pro tempore. Pursuant to the rule, the gentleman from 
Texas (Mr. Burgess) and the gentleman from New York (Mr. Engel) each 
will control 20 minutes.
  The Chair recognizes the gentleman from New York.


                             General Leave

  Mr. BURGESS. Mr. Speaker, I ask unanimous consent that all Members 
may have 5 legislative days in which to revise and extend their remarks 
and insert extraneous materials in the Record on the bill.
  The SPEAKER pro tempore. Is there objection to the request of the 
gentleman from Texas?
  There was no objection.
  Mr. BURGESS. Mr. Speaker, I yield myself such time as I may consume.
  Mr. Speaker, thank you for the recognition to discuss this 
bipartisan, bicameral legislation that was introduced with Mr. Engel of 
New York, H.R. 594, the Muscular Dystrophy Community Assistance, 
Research and Education Amendments of 2014, or the MD CARE Act.
  H.R. 594 has 113 bipartisan cosponsors. This bill makes targeted 
updates and improvements to legislation first passed by Congress in 
2001 and then reauthorized in 2008. In each instance, these bills, 
including H.R. 594, have passed both subcommittee and full committee on 
voice votes and passed overwhelmingly on the floor under suspension, a 
trend I hope we can continue today.
  Mr. Speaker, this legislation is supported by the totality of the 
muscular dystrophy community with over 20 organizations writing letters 
of support, including the Muscular Dystrophy Association and the Parent 
Project Muscular Dystrophy.
  In short, the underlying law is a success story. Since its enactment, 
this law has successfully targeted limited Federal resources to improve 
clinical care across the muscular dystrophies.
  Muscular dystrophy is not a single disease. It is a group of genetic 
disorders characterized by progressive weakness and the loss of 
voluntary muscles that control movement.
  Muscular dystrophy affects hundreds of thousands of children and 
adults throughout the United States and worldwide. Some forms of 
muscular dystrophy are seen in infancy or childhood, while others may 
not appear until adulthood. The extent of muscle weakness, as well as 
rate of progression, varies based on where among a spectrum of muscular 
dystrophies a patient falls.
  Since 2001, this law has successfully changed the lives of families 
impacted

[[Page H6934]]

by all forms of muscular dystrophy. It has coordinated and focused 
Federal biomedical research on nine forms of muscular dystrophy, 
developed epidemiologic data, and created patient care guidelines.
  Here is the good news: it has made a real difference. Since 2001, 
there have been 67 clinical trials of drugs or therapies for muscular 
dystrophy, and many can be traced to the basic research efforts 
stemming from this law.
  In Duchenne muscular dystrophy alone, children are living 10 years 
longer, and many are now entering young adulthood. However, as we often 
heard, sometimes the law does not keep pace with science and medicine.
  For example, when the original law was written, those children who 
are now going into adulthood would not have been able to look forward 
to such a favorable timeline. It does not make sense that we have 
developed care guidelines that have helped these patients live longer 
and then stop when they turn 18. This bill will address these issues 
with small, targeted updates to current law.
  Mr. Speaker, let me be very clear about this. This bill creates no 
new programs, this bill creates no increases of authorizations of 
appropriations, nor does it create additional authorizations of 
appropriations. It simply proposes a small set of improvements intended 
to ensure that the program is focusing on the most critical areas that 
funding being provided today reflects current scientific and medical 
knowledge.
  The bill is fiscally responsible because it makes the needed update 
in law to ensure that any money that is spent is not held back by an 
outdated statute.
  I would like to thank Chairmen Upton and Pitts, as well as Ranking 
Members Waxman and Pallone for their help. I also want to thank the 
staff on both sides of the dais in the committee and the Capitol for 
their work in getting this bill to this point.
  Specifically, I want to thank Clay Alspach, Katie Novaria, and Brenda 
Destro with the Energy and Commerce majority, and Hannah Green with the 
minority; from Mr. Engel's staff, Mark Iozzi and Heidi Ross, who 
negotiated with my staff in good faith from day one; and on my staff, I 
particularly want to thank my deputy chief of staff J.P. Paluskiewicz 
who led negotiations, as well as Katie Allen and my former staffer, 
Sarah Johnson.
  This bill is bipartisan. It has a history of consensus. It is 
fiscally responsible and will benefit all Americans suffering from 
muscular dystrophy.
  I urge everyone to support it, and I reserve the balance of my time.
  Mr. ENGEL. Mr. Speaker, I rise in strong support of H.R. 594, the 
Paul D. Wellstone Muscular Dystrophy Community Assistance, Research and 
Education Amendments, and I yield myself such time as I may consume.
  Mr. Speaker, I worked with the gentleman from Texas, Dr. Burgess, to 
introduce this bill, and I would personally like to thank him for his 
hard work and partnership developing the legislation and bringing it 
through the Energy and Commerce Committee.
  I would also like to thank our colleagues, Representatives Waxman, 
Pallone, Pitts, and Upton, for their support and effort to get this 
bill here today.
  Mr. Speaker, the MD CARE Act has always enjoyed full bipartisan 
support. Congress first approved it in 2001, we updated it in 2008, and 
we are doing the same now. I am pleased to see that this bipartisan 
tradition remains strong as we continue the fight against muscular 
dystrophy by taking up this legislation today.
  As I am sure many of my colleagues already know and as Dr. Burgess 
pointed out, muscular dystrophy is not a single disease, but a spectrum 
of genetic disorders resulting from progressive muscle weakness and 
degeneration.
  Hundreds of thousands of children and adults currently suffer from 
various forms of muscular dystrophy in the United States and around the 
world.

                              {time}  1800

  Although there is still no cure, the MD CARE Act has played a 
critical role in improving the lives of those suffering from these 
lethal disorders. The MD CARE Act has successfully coordinated and 
focused biomedical research, established clinical care standards, 
improved data collection, and helped generate more than 65 clinical 
trials, more than 30 of which are still ongoing.
  As a direct result of this law, the lifespan of the average American 
living with Duchenne muscular dystrophy--the most common form of 
muscular dystrophy in children--has increased by a full 10 years. That 
is a statistic of which we can be proud. This progress is substantial, 
and the law needs to be updated to reflect these developments.
  As people live longer, their needs evolve. The legislation we are 
considering today responds to the changing needs of muscular dystrophy 
patients without requiring any additional authorization of 
appropriations. It will make targeted updates to the MD CARE Act, 
bringing our programs in line with the scientific advancements we have 
made since 2008 when the law was last updated.
  The bill allows the Director of the National Institutes of Health to 
expand and intensify programs targeted at the nine most common forms of 
muscular dystrophy. It also enhances research at the Wellstone Centers 
of Excellence, strengthens the Muscular Dystrophy Coordinating 
Committee, updates data collection, and increases awareness of 
treatment options among medical professionals.
  This bill is supported by 113 bipartisan cosponsors, and it has the 
full backing of the muscular dystrophy community. Passing H.R. 594 will 
make a huge difference in the lives of all those affected by muscular 
dystrophy. I urge my colleagues to give it their full support.
  I want to conclude by thanking majority and minority staff, which Dr. 
Burgess mentioned, and I once again thank him for his partnership on 
this bill.
  I yield back the balance of my time.
  Mr. BURGESS. Mr. Speaker, I yield 5 minutes to the gentleman from 
Michigan (Mr. Upton), chairman of the full committee.
  Mr. UPTON. Mr. Speaker, I rise this afternoon in support of yet 
another very important health bill advanced by our Energy and Commerce 
Committee, H.R. 594, the Paul D. Wellstone Muscular Dystrophy Community 
Assistance, Research and Education Amendments of 2014, or the MD CARE 
Act. The bill again demonstrates the continued bipartisan achievements 
of our committee, and particularly of the Health Subcommittee which has 
a proven track record of getting solutions put into law that have a 
profound, positive effect on Americans all across the country.
  Muscular dystrophy, it is a complex group of diseases that affects 
the mobility and life expectancy of so many Americans. Current 
treatments can alleviate symptoms of the muscular dystrophies like 
Duchenne and slow muscle deterioration, but there is no treatment to 
reverse it. It is very sad. Even with the progress made by researchers, 
obviously a lot of work remains.
  This legislation is going to help us find the answers to these 
diseases. The bill ensures the continuation of critical research at the 
NIH and updates language in the Public Health Service Act to reflect 
the latest scientific advances. In addition, the Muscular Dystrophy 
Coordinating Committee of HHS is going to be strengthened to accelerate 
the understanding of the impact of muscular dystrophy on patients; and, 
more importantly, it is going to work to find ways to expedite the 
approval of emerging therapies that will hopefully some day lead to a 
cure.
  I want to particularly thank Dr. Burgess and Eliot Engel for their 
leadership on this bill, and also Chairman Pitts and Ranking Members 
Waxman and Pallone.
  I have to say that this is now the 62nd bill that our committee will 
have passed out of full committee that will pass on the House floor. We 
have than more a dozen bipartisan committee bills, public health bills 
that have already been signed into law. We hope this will be one of 
those as we advance this bill, as well as the Sunscreen Innovation Act, 
which we just passed a few minutes ago.
  I know that this Congress can be remembered as the public health 
Congress, and I urge my colleagues to support this important 
legislation which passed by a voice vote unanimously in our committee. 
It sends a strong signal

[[Page H6935]]

to those individuals and their families impacted by muscular dystrophy 
that Congress--yes, we are--is committed to finding a cure. We will 
find the resources to do this. This legislation is yet another step, 
and I urge my colleagues to vote ``yes.''
  Mr. BURGESS. Mr. Speaker, let me close by saying this is a good bill, 
and I urge all Members to support it.
  I yield back the balance of my time.
  Mr. WAXMAN. Mr. Speaker, I want to express my support for H.R. 594, 
the Paul D. Wellstone Muscular Dystrophy Community Assistance, Research 
and Education (MD CARE) Amendments of 2014.
  The Centers for Disease Control and Prevention and the National 
Institutes of Health oversee a number of research, surveillance, and 
educational efforts involving muscular dystrophy.
  H.R. 594 will build upon the federal government's current activities 
regarding muscular dystrophy. Scientific advances have extended the 
lives of individuals living with forms of muscular dystrophy--like 
Duchenne. Today's legislation will help better incorporate the needs of 
adults with muscular dystrophy into current work in this area.
  Congressman Engel and Congressman Burgess should be recognized for 
their leadership on this issue. I would also like to thank Chairman 
Upton, Chairman Pitts, Ranking Member Pallone, and all of our staff for 
their work in advancing this bill through the Energy and Commerce 
Committee.
  I support H.R. 594 and urge my colleagues to do the same.
  The SPEAKER pro tempore. The question is on the motion offered by the 
gentleman from Texas (Mr. Burgess) that the House suspend the rules and 
pass the bill, H.R. 594, as amended.
  The question was taken; and (two-thirds being in the affirmative) the 
rules were suspended and the bill, as amended, was passed.
  The title of the bill was amended so as to read: ``A bill to amend 
the Public Health Service Act relating to Federal research on muscular 
dystrophy, and other purposes.''.
  A motion to reconsider was laid on the table.

                          ____________________