II 
Calendar No. 529 
113TH CONGRESS 
2D SESSION 
H. R. 594 
IN THE SENATE OF THE UNITED STATES 
JULY 29, 2014 
Received 
AUGUST 1, 2014 
Read twice and placed on the calendar 
AN ACT 
To amend the Public Health Service Act relating to Federal 
research on muscular dystrophy, and for other purposes. 
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 2014’’. 
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, congenital mus-
cular dystrophy, limb-girdle muscular dys-
trophy,’’ after ‘‘Duchenne,’’; 
(2) in subsection (b)— 
(A) in paragraph (2)— 
(i) by striking ‘‘genetics,’’ at the sec-
ond place it appears; and 
(ii) by inserting ‘‘cardiac and pul-
monary function, and’’ after ‘‘imaging,’’; 
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)— 
(I) by striking ‘‘and the Food 
and Drug Administration’’ and insert-
ing ‘‘, the Food and Drug Administra-
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tion, and the Administration for Com-
munity Living’’; 
(II) by inserting ‘‘and adults’’ 
after ‘‘children’’; and 
(III) by striking ‘‘such as the De-
partment of Education’’ and inserting 
‘‘including the Department of Edu-
cation and the Social Security Admin-
istration’’; and 
(B) in paragraph (4)(B), by inserting ‘‘, 
but shall meet no fewer than two times per cal-
endar year’’ before the period; and 
(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)— 
(I) by inserting ‘‘public services,’’ 
before ‘‘and rehabilitative issues’’; and 
(II) by inserting ‘‘, studies to 
demonstrate the cost-effectiveness of 
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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 var-
ious forms of muscular dystrophy’’ 
after ‘‘including studies of the impact 
of such diseases in rural and under-
served 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 MUS-
CULAR 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)— 
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(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 para-
graph (4); 
(3) by inserting after paragraph (2) the fol-
lowing: 
‘‘(3) in developing and updating care consider-
ations 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 insert-
ing ‘‘various’’ before ‘‘other forms of muscular dys-
trophy’’. 
Passed the House of Representatives July 28, 2014. 
Attest: 
KAREN L. HAAS, 
Clerk. 
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Calendar No. 529 
113TH CONGRESS 
2D SESSION 
H. R. 594 
AN ACT 
To amend the Public Health Service Act relating to 
Federal research on muscular dystrophy, and for 
other purposes. 
AUGUST 1, 2014 
Read twice and placed on the calendar 
VerDate Mar 15 2010 
00:08 Aug 02, 2014
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PO 00000
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