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. 

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

2 This Act may be cited as the ‘‘Paul D. Wellstone 

3 Muscular Dystrophy Community Assistance, Research and 

4 Education Amendments of 2014’’. 

5 SEC. 2. INITIATIVE THROUGH THE DIRECTOR OF THE NA6 TIONAL INSTITUTES OF HEALTH. 

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

8 U.S.C. 283g) is amended— 

9 (1) in subsection (a)(1)— 

10 (A) by striking ‘‘Muscoskeletal’’ and in11 serting ‘‘Musculoskeletal’’; and 

12 (B) by inserting ‘‘Becker, congenital mus13 cular dystrophy, limb-girdle muscular dys14 trophy,’’ after ‘‘Duchenne,’’; 

15 (2) in subsection (b)— 

16 (A) in paragraph (2)— 

17 (i) by striking ‘‘genetics,’’ at the sec18 ond place it appears; and 

19 (ii) by inserting ‘‘cardiac and pul20 monary function, and’’ after ‘‘imaging,’’; 

21 and 

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

23 sharing of data’’ after ‘‘regular communica24 tion’’; 

25 (3) in subsection (d)— 

26 (A) in paragraph (2)— 
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1 (i) in the matter preceding subpara2 graph (A), by striking ‘‘15’’ and inserting 

3 ‘‘18’’; and 

4 (ii) in subparagraph (A)— 

5 (I) by striking ‘‘and the Food 

6 and Drug Administration’’ and insert7 ing ‘‘, the Food and Drug Administra8 tion, and the Administration for Com9 munity Living’’; 

10 (II) by inserting ‘‘and adults’’ 

11 after ‘‘children’’; and 

12 (III) by striking ‘‘such as the De13 partment of Education’’ and inserting 

14 ‘‘including the Department of Edu15 cation and the Social Security Admin16 istration’’; and 

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

18 but shall meet no fewer than two times per cal19 endar year’’ before the period; and 

20 (4) in subsection (e)— 

21 (A) in paragraph (1)— 

22 (i) in the matter preceding subpara23 graph (A), by striking ‘‘through the na24 tional research institutes’’ and inserting 

25 ‘‘through the agencies represented on the 
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1 Coordinating Committee pursuant to sub2 section (d)(2)(A)’’; and 

3 (ii) in subparagraph (A)— 

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

5 before ‘‘and rehabilitative issues’’; and 

6 (II) by inserting ‘‘, studies to 

7 demonstrate the cost-effectiveness of 

8 providing independent living resources 

9 and support to patients with various 

10 forms of muscular dystrophy, and 

11 studies to determine optimal clinical 

12 care interventions for adults with var13 ious forms of muscular dystrophy’’ 

14 after ‘‘including studies of the impact 

15 of such diseases in rural and under16 served communities’’; and 

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

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

19 ‘‘and new clinical interventions to improve the 

20 health of those with muscular dystrophy’’. 

21 SEC. 3. SURVEILLANCE AND RESEARCH REGARDING MUS22 CULAR DYSTROPHY. 

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

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

25 by inserting before the period the following: ‘‘and, to the 
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1 extent possible, ensure that data be representative of all 

2 affected populations and shared in a timely manner’’. 

3 SEC. 4. INFORMATION AND EDUCATION. 

4 Section 5(c) of the Muscular Dystrophy Community 

5 Assistance, Research and Education Amendments of 2001 

6 (42 U.S.C. 247b–19(c)) is amended— 

7 (1) in paragraph (2)— 

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

9 patients, including acute care considerations,’’ 

10 after ‘‘issuance of care considerations’’; 

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

12 forms of muscular dystrophy’’; and 

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

14 (2) by redesignating paragraph (3) as para15 graph (4); 

16 (3) by inserting after paragraph (2) the fol17 lowing: 

18 ‘‘(3) in developing and updating care consider19 ations under paragraph (2), incorporate strategies 

20 specifically responding to the findings of the national 

21 transitions survey of minority, young adult, and 

22 adult communities of muscular dystrophy patients; 

23 and’’; and 
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1 (4) in paragraph (4), as redesignated, by insert2 ing ‘‘various’’ before ‘‘other forms of muscular dys3 trophy’’. 

Passed the House of Representatives July 28, 2014. 

Attest: 

Clerk. 

113TH CONGRESS 

2D SESSION H. R. 594 

AN ACT 

To amend the Public Health Service Act relating to 

other purposes. Federal research on muscular dystrophy, and for