[Congressional Bills 113th Congress]
[From the U.S. Government Publishing Office]
[H.R. 594 Introduced in House (IH)]
113th CONGRESS
1st Session
H. R. 594
To reauthorize and extend the Paul D. Wellstone Muscular Dystrophy
Community Assistance, Research, and Education Amendments of 2008.
_______________________________________________________________________
IN THE HOUSE OF REPRESENTATIVES
February 8, 2013
Mr. Burgess (for himself and Mr. Engel) introduced the following bill;
which was referred to the Committee on Energy and Commerce
_______________________________________________________________________
A BILL
To reauthorize and extend the Paul D. Wellstone Muscular Dystrophy
Community Assistance, Research, and Education Amendments of 2008.
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 2013''.
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, myotonic,
facioscapulohumeral muscular dystrophy (referred to in
this section as `FSHD'), Congenital muscular dystrophy,
Limb-girdle muscular dystrophy,'' after ``Duchenne,'';
(2) in subsection (b)--
(A) in paragraph (2), by inserting ``cardiac and
pulmonary function,'' after ``imaging, genetics,''; 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), by striking
``children with muscular dystrophy, such as the
Department of Education'' and inserting
``children and adults with muscular dystrophy,
such as the Department of Education, the Social
Security Administration, the United States
Administration for Community Living''; and
(B) in paragraph (4)(B), by inserting ``, and shall
meet no less than two times per calendar year'' before
the period;
(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), by striking ``and
rehabilitative issues, including studies of the
impact of such diseases in rural and
underserved communities'' and inserting
``public resources, and rehabilitative issues,
including studies of the impact of such
diseases in rural and underserved communities,
health economic 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''; and
(B) in paragraph (2), by adding at the end the
following:
``(F) The development of clinical interventions to
improve the health of adults with various forms of
muscular dystrophy.''; and
(5) in subsection (g), by striking ``for the various forms
of muscular dystrophy by prioritizing the achievement of the
goals related to this topic in the plan under subsection
(e)(1)'' and inserting ``and shall, not later than 6 months
after the date of enactment of the Paul D. Wellstone Muscular
Dystrophy Community Assistance, Research and Education
Amendments of 2013, in coordination with appropriate Federal
agencies, including relevant offices within the Food and Drug
Administration and supported by the National Institutes of
Health and Department of Defense, develop a plan to expedite
the evaluation and approval of emerging therapies and
personalized medicines that have the potential to decrease
fatal disease progression across the various forms of muscular
dystrophy''.
SEC. 3. SURVEILLANCE AND RESEARCH REGARDING MUSCULAR DYSTROPHY.
Section 317Q of the Public Health Service Act (42 U.S.C. 247b-18)
is amended--
(1) in the second sentence of subsection (b), by inserting
before the period the following: ``and ensure that the program
captures data from different racial and ethnic populations, and
that such data are made publicly available to investigators
conducting public or private research on muscular dystrophy'';
and
(2) in subsection (c), by adding at the end the following:
``The Secretary shall also foster ongoing engagement and
collaboration between the surveillance program and centers of
excellence.''.
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 by adding at the end the following:
``(4) Update and widely disseminate existing Duchenne-
Becker muscular dystrophy care considerations for pediatric
patients, develop and widely disseminate Duchenne-Becker
muscular dystrophy care considerations for adult patients, and
develop and widely disseminate acute care considerations for
all muscular dystrophy populations. The care considerations
should build upon existing efforts currently underway for
congenital muscular dystrophy, fascioscapulohumeral muscular
dystrophy, limb-girdle muscular dystrophy, and myotonic
muscular dystrophy, and incorporate strategies specifically
responding to the findings of the national transitions survey
of minority, young adult and adult communities of muscular
dystrophy patients.''.
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