IB 
Union Calendar No. 416 
113TH CONGRESS 
2D SESSION 
H. R. 594 
[Report No. 113–556] 
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 
JULY 24, 2014 
Additional sponsors: Ms. SCHWARTZ, Mr. HALL, Mr. PETERSON, Ms. MATSUI, 
Mrs. CAROLYN B. MALONEY of New York, Mr. BISHOP of Georgia, Mr. 
ANDREWS, Mr. RUSH, Mr. RUNYAN, Mr. GRAVES of Missouri, Mr. POE 
of Texas, Mr. SESSIONS, Mr. KING of New York, Ms. SHEA-PORTER, Mr. 
OWENS, Mr. WELCH, Mr. BACHUS, Mrs. LOWEY, Mr. MARKEY, Ms. 
SLAUGHTER, Ms. BROWNLEY of California, Mr. HOLT, Mr. ELLISON, Mr. 
KILMER, Mr. GENE GREEN of Texas, Mr. LOEBSACK, Mr. LUETKE-
MEYER, Mr. TIERNEY, Mr. SMITH of Washington, Mr. SAM JOHNSON of 
Texas, Mr. WITTMAN, Mr. KIND, Mr. GERLACH, Mr. POLIS, Mr. 
MICHAUD, Mr. PERLMUTTER, Ms. DEGETTE, Mr. GARDNER, Mr. LIPIN-
SKI, Mr. COFFMAN, Mr. GUTHRIE, Mr. RIGELL, Mr. YOUNG of Alaska, 
Ms. MCCOLLUM, Mr. RENACCI, Mr. FORBES, Mr. HIMES, Mr. HIGGINS, 
Mr. HUDSON, Mr. O’ROURKE, Mr. GRIFFIN of Arkansas, Ms. PINGREE 
of Maine, Ms. SCHAKOWSKY, Mr. RANGEL, Mr. OLSON, Mr. BISHOP of 
New York, Ms. CLARKE of New York, Mr. CULBERSON, Mr. VAN HOL-
LEN, Mr. HUFFMAN, Ms. JACKSON LEE, Mr. POSEY, Mr. FITZPATRICK, 
Mr. TONKO, Mr. COHEN, Mr. MATHESON, Mrs. MCCARTHY of New York, 
Mr. ENYART, Mr. STIVERS, Mr. DUNCAN of Tennessee, Ms. LOFGREN, 
Ms. LEE of California, Mrs. KIRKPATRICK, Mr. ISRAEL, Mr. CA´RDENAS, 
Mr. LARSEN
of Washington, Mr. MEEHAN, Mr. CONNOLLY, Mr. 
KEATING, Mr. SIRES, Mr. LANCE, Ms. CLARK of Massachusetts, Mr. 
DOYLE, Mr. FINCHER, Mr. WOLF, Mr. DAINES, Mr. SENSENBRENNER, 
Mr. CARSON of Indiana, Mr. PASCRELL, Mr. KENNEDY, Mr. MORAN, Mr. 
LYNCH, Mr. GARCIA, Ms. FRANKEL of Florida, Mr. NUGENT, Mr. WIL-
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SON of South Carolina, Mr. DELANEY, Mr. SMITH of New Jersey, Mr. 
DEUTCH, Mr. RAHALL, Mr. TURNER, Mr. BENISHEK, Mrs. MCMORRIS 
RODGERS, Mr. GRIMM, Mr. HASTINGS of Florida, Mr. BISHOP of Utah, 
Mr. MCGOVERN, Mr. CHAFFETZ, Mr. MICA, Mr. STEWART, Mr. MILLER 
of Florida, and Mr. LATHAM 
JULY 24, 2014 
Reported with amendments, committed to the Committee of the Whole House 
on the State of the Union, and ordered to be printed 
[Strike out all after the enacting clause and insert the part printed in italic] 
[For text of introduced bill, see copy of bill as introduced on February 8, 2013] 
A BILL 
To reauthorize and extend the Paul D. Wellstone Muscular 
Dystrophy Community Assistance, Research, and Edu-
cation Amendments of 2008. 
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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 Mus-
cular 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— 
(1) in subsection (a)(1)— 
(A) by striking ‘‘Muscoskeletal’’ and insert-
ing ‘‘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 second 
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 communication’’; 
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(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 inserting ‘‘, 
the Food and Drug Administration, 
and the Administration for Commu-
nity 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-
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tional research institutes’’ and inserting 
‘‘through the agencies represented on the Co-
ordinating 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 
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’’. 
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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)— 
(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 
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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’’. 
Amend the title so as to read: ‘‘A bill to amend the 
Public Health Service Act relating to Federal research on 
muscular dystrophy, and other purposes.’’. 
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Union Calendar No. 416 
113TH CONGRESS 
2D SESSION 
H. R. 594 
[Report No. 113–556] 
A BILL 
To reauthorize and extend the Paul D. Wellstone 
Muscular Dystrophy Community Assistance, Re-
search, and Education Amendments of 2008. 
JULY 24, 2014 
Reported with amendments, committed to the Committee 
of the Whole House on the State of the Union, and or-
dered to be printed 
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20:16 Jul 25, 2014
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