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. 

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 

5 Muscular 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— 


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HR 594 PCS

1 (1) in subsection (a)(1)— 

2 (A) by striking ‘‘Muscoskeletal’’ and in3 serting ‘‘Musculoskeletal’’; and 

4 (B) by inserting ‘‘Becker, congenital mus5 cular dystrophy, limb-girdle muscular dys6 trophy,’’ after ‘‘Duchenne,’’; 

7 (2) in subsection (b)— 

8 (A) in paragraph (2)— 

9 (i) by striking ‘‘genetics,’’ at the sec10 ond place it appears; and 

11 (ii) by inserting ‘‘cardiac and pul12 monary function, and’’ after ‘‘imaging,’’; 

13 and 

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

15 sharing of data’’ after ‘‘regular communica16 tion’’; 

17 (3) in subsection (d)— 

18 (A) in paragraph (2)— 

19 (i) in the matter preceding subpara20 graph (A), by striking ‘‘15’’ and inserting 

21 ‘‘18’’; and 

22 (ii) in subparagraph (A)— 

23 (I) by striking ‘‘and the Food 

24 and Drug Administration’’ and insert25 ing ‘‘, the Food and Drug AdministraVerDate Mar 15 2010 00:08 Aug 02, 2014 Jkt 039200 PO 00000 Frm 00002 Fmt 6652 Sfmt 6201 E:\BILLS\H594.PCS H594

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HR 594 PCS

1 tion, and the Administration for Com2 munity Living’’; 

3 (II) by inserting ‘‘and adults’’ 

4 after ‘‘children’’; and 

5 (III) by striking ‘‘such as the De6 partment of Education’’ and inserting 

7 ‘‘including the Department of Edu8 cation and the Social Security Admin9 istration’’; and 

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

11 but shall meet no fewer than two times per cal12 endar year’’ before the period; and 

13 (4) in subsection (e)— 

14 (A) in paragraph (1)— 

15 (i) in the matter preceding subpara16 graph (A), by striking ‘‘through the na17 tional research institutes’’ and inserting 

18 ‘‘through the agencies represented on the 

19 Coordinating Committee pursuant to sub20 section (d)(2)(A)’’; and 

21 (ii) in subparagraph (A)— 

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

23 before ‘‘and rehabilitative issues’’; and 

24 (II) by inserting ‘‘, studies to 

25 demonstrate the cost-effectiveness of 


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HR 594 PCS

1 providing independent living resources 

2 and support to patients with various 

3 forms of muscular dystrophy, and 

4 studies to determine optimal clinical 

5 care interventions for adults with var6 ious forms of muscular dystrophy’’ 

7 after ‘‘including studies of the impact 

8 of such diseases in rural and under9 served communities’’; and 

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

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

12 ‘‘and new clinical interventions to improve the 

13 health of those with muscular dystrophy’’. 

14 SEC. 3. SURVEILLANCE AND RESEARCH REGARDING MUS15 CULAR DYSTROPHY. 

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

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

18 by inserting before the period the following: ‘‘and, to the 

19 extent possible, ensure that data be representative of all 

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

21 SEC. 4. INFORMATION AND EDUCATION. 

22 Section 5(c) of the Muscular Dystrophy Community 

23 Assistance, Research and Education Amendments of 2001 

24 (42 U.S.C. 247b–19(c)) is amended— 

25 (1) in paragraph (2)— 


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HR 594 PCS

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

2 patients, including acute care considerations,’’ 

3 after ‘‘issuance of care considerations’’; 

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

5 forms of muscular dystrophy’’; and 

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

7 (2) by redesignating paragraph (3) as para8 graph (4); 

9 (3) by inserting after paragraph (2) the fol10 lowing: 

11 ‘‘(3) in developing and updating care consider12 ations under paragraph (2), incorporate strategies 

13 specifically responding to the findings of the national 

14 transitions survey of minority, young adult, and 

15 adult communities of muscular dystrophy patients; 

16 and’’; and 

17 (4) in paragraph (4), as redesignated, by insert18 ing ‘‘various’’ before ‘‘other forms of muscular dys19 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 

other purposes. Federal research on muscular dystrophy, and for 

AUGUST 1, 2014 

Read twice and placed on the calendar 


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