I 
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 Edu-
cation Amendments of 2008. 
Be it enacted by the Senate and House of Representa-
tives 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 NA-
TIONAL INSTITUTES OF HEALTH. 
Section 404E of the Public Health Service Act (42 
U.S.C. 283g) is amended— 
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(1) in subsection (a)(1)— 
(A) by striking ‘‘Muscoskeletal’’ and in-
serting ‘‘Musculoskeletal’’; and 
(B) 
by 
inserting 
‘‘Becker, 
myotonic, 
facioscapulohumeral muscular dystrophy (re-
ferred to in this section as ‘FSHD’), Congenital 
muscular dystrophy, Limb-girdle muscular dys-
trophy,’’ after ‘‘Duchenne,’’; 
(2) in subsection (b)— 
(A) in paragraph (2), by inserting ‘‘cardiac 
and pulmonary function,’’ after ‘‘imaging, ge-
netics,’’; and 
(B) in paragraph (3), by inserting ‘‘and 
sharing of data’’ after ‘‘regular communica-
tion’’; 
(3) in subsection (d)— 
(A) in paragraph (2)— 
(i) in the matter preceding subpara-
graph (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 insert-
ing ‘‘children and adults with muscular 
dystrophy, such as the Department of 
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Education, the Social Security Administra-
tion, the United States Administration for 
Community Living’’; and 
(B) in paragraph (4)(B), by inserting ‘‘, 
and shall meet no less than two times per cal-
endar year’’ before the period; 
(4) in subsection (e)— 
(A) in paragraph (1)— 
(i) in the matter preceding subpara-
graph (A), by striking ‘‘through the na-
tional research institutes’’ and inserting 
‘‘through the agencies represented on the 
Coordinating Committee pursuant to sub-
section (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 dis-
eases in rural and underserved commu-
nities, health economic studies to dem-
onstrate the cost-effectiveness of providing 
independent living resources and support 
to patients with various forms of muscular 
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dystrophy, and studies to determine opti-
mal clinical care interventions for adults 
with various forms of muscular dys-
trophy’’; and 
(B) in paragraph (2), by adding at the end 
the following: 
‘‘(F) The development of clinical interven-
tions to improve the health of adults with var-
ious forms of muscular dystrophy.’’; and 
(5) in subsection (g), by striking ‘‘for the var-
ious 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 en-
actment of the Paul D. Wellstone Muscular Dys-
trophy Community Assistance, Research and Edu-
cation Amendments of 2013, in coordination with 
appropriate Federal agencies, including relevant of-
fices 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 var-
ious forms of muscular dystrophy’’. 
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SEC. 3. SURVEILLANCE AND RESEARCH REGARDING MUS-
CULAR 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 en-
sure that the program captures data from different 
racial and ethnic populations, and that such data 
are made publicly available to investigators con-
ducting public or private research on muscular dys-
trophy’’; and 
(2) in subsection (c), by adding at the end the 
following: ‘‘The Secretary shall also foster ongoing 
engagement and collaboration between the surveil-
lance 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 consider-
ations for pediatric patients, develop and widely dis-
seminate Duchenne-Becker muscular dystrophy care 
considerations for adult patients, and develop and 
widely disseminate acute care considerations for all 
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muscular dystrophy populations. The care consider-
ations should build upon existing efforts currently 
underway 
for 
congenital 
muscular 
dystrophy, 
fascioscapulohumeral muscular dystrophy, limb-gir-
dle muscular dystrophy, and myotonic muscular dys-
trophy, and incorporate strategies specifically re-
sponding to the findings of the national transitions 
survey of minority, young adult and adult commu-
nities of muscular dystrophy patients.’’. 
Æ 
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