[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.
____________________