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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. LUETKEMEYER, 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. LIPINSKI, 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 HOLLEN, 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. WILVerDate Mar 15 2010 20:16 Jul 25, 2014 Jkt 039200 PO 00000 Frm 00001 Fmt 6652 Sfmt 6652 E:\BILLS\H594.RH H594

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•HR 594 RH

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 Education Amendments of 2008. 


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•HR 594 RH

1 Be it enacted by the Senate and House of Representa2 tives of the United States of America in Congress assembled, 

3 SECTION 1. SHORT TITLE. 

4 This Act may be cited as the ‘‘Paul D. Wellstone Mus5 cular Dystrophy Community Assistance, Research and 

6 Education Amendments of 2014’’. 

7 SEC. 2. INITIATIVE THROUGH THE DIRECTOR OF THE NA8 TIONAL INSTITUTES OF HEALTH. 

9 Section 404E of the Public Health Service Act (42 

10 U.S.C. 283g) is amended— 

11 (1) in subsection (a)(1)— 

12 (A) by striking ‘‘Muscoskeletal’’ and insert13 ing ‘‘Musculoskeletal’’; and 

14 (B) by inserting ‘‘Becker, congenital mus15 cular dystrophy, limb-girdle muscular dys16 trophy,’’ after ‘‘Duchenne,’’; 

17 (2) in subsection (b)— 

18 (A) in paragraph (2)— 

19 (i) by striking ‘‘genetics,’’ at the second 

20 place it appears; and 

21 (ii) by inserting ‘‘cardiac and pul22 monary function, and’’ after ‘‘imaging,’’; 

23 and 

24 (B) in paragraph (3), by inserting ‘‘and 

25 sharing of data’’ after ‘‘regular communication’’; 


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1 (3) in subsection (d)— 

2 (A) in paragraph (2)— 

3 (i) in the matter preceding subpara4 graph (A), by striking ‘‘15’’ and inserting 

5 ‘‘18’’; and 

6 (ii) in subparagraph (A)— 

7 (I) by striking ‘‘and the Food and 

8 Drug Administration’’ and inserting ‘‘, 

9 the Food and Drug Administration, 

10 and the Administration for Commu11 nity Living’’; 

12 (II) by inserting ‘‘and adults’’ 

13 after ‘‘children’’; and 

14 (III) by striking ‘‘such as the De15 partment of Education’’ and inserting 

16 ‘‘including the Department of Edu17 cation and the Social Security Admin18 istration’’; and 

19 (B) in paragraph (4)(B), by inserting ‘‘, 

20 but shall meet no fewer than two times per cal21 endar year’’ before the period; and 

22 (4) in subsection (e)— 

23 (A) in paragraph (1)— 

24 (i) in the matter preceding subpara25 graph (A), by striking ‘‘through the naVerDate Mar 15 2010 20:16 Jul 25, 2014 Jkt 039200 PO 00000 Frm 00004 Fmt 6652 Sfmt 6203 E:\BILLS\H594.RH H594

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1 tional research institutes’’ and inserting 

2 ‘‘through the agencies represented on the Co3 ordinating Committee pursuant to sub4 section (d)(2)(A)’’; and 

5 (ii) in subparagraph (A)— 

6 (I) by inserting ‘‘public services,’’ 

7 before ‘‘and rehabilitative issues’’; and 

8 (II) by inserting ‘‘, studies to 

9 demonstrate the cost-effectiveness of 

10 providing independent living resources 

11 and support to patients with various 

12 forms of muscular dystrophy, and 

13 studies to determine optimal clinical 

14 care interventions for adults with var15 ious forms of muscular dystrophy’’ 

16 after ‘‘including studies of the impact 

17 of such diseases in rural and under18 served communities’’; and 

19 (B) in paragraph (2)(D), by inserting after 

20 ‘‘including new biological agents’’ the following: 

21 ‘‘and new clinical interventions to improve the 

22 health of those with muscular dystrophy’’. 


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1 SEC. 3. SURVEILLANCE AND RESEARCH REGARDING MUS2 CULAR DYSTROPHY. 

3 The second sentence of section 317Q(b) of the Public 

4 Health Service Act (42 U.S.C. 247b–18(b)) is amended by 

5 inserting before the period the following: ‘‘and, to the extent 

6 possible, ensure that data be representative of all affected 

7 populations and shared in a timely manner’’. 

8 SEC. 4. INFORMATION AND EDUCATION. 

9 Section 5(c) of the Muscular Dystrophy Community 

10 Assistance, Research and Education Amendments of 2001 

11 (42 U.S.C. 247b–19(c)) is amended— 

12 (1) in paragraph (2)— 

13 (A) by inserting ‘‘for pediatric and adult 

14 patients, including acute care considerations,’’ 

15 after ‘‘issuance of care considerations’’; 

16 (B) by inserting ‘‘various’’ before ‘‘other 

17 forms of muscular dystrophy’’; and 

18 (C) by striking ‘‘and’’ at the end; 

19 (2) by redesignating paragraph (3) as para20 graph (4); 

21 (3) by inserting after paragraph (2) the fol22 lowing: 

23 ‘‘(3) in developing and updating care consider24 ations under paragraph (2), incorporate strategies 

25 specifically responding to the findings of the national 

26 transitions survey of minority, young adult, and 


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1 adult communities of muscular dystrophy patients; 

2 and’’; and 

3 (4) in paragraph (4), as redesignated, by insert4 ing ‘‘various’’ before ‘‘other forms of muscular dys5 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 

search, and Education Amendments of 2008. Muscular Dystrophy Community Assistance, ReJULY 24, 2014 

Reported with amendments, committed to the Committee 

dered to be printed of the Whole House on the State of the Union, and orVerDate Mar 15 2010 20:16 Jul 25, 2014 Jkt 039200 PO 00000 Frm 00008 Fmt 6651 Sfmt 6651 E:\BILLS\H594.RH H594

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