I 

113TH CONGRESS 

1ST SESSION H. R. 594 

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 

A BILL 

To reauthorize and extend the Paul D. Wellstone Muscular 

Dystrophy Community Assistance, Research, and Education Amendments of 2008. 

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 2013’’. 

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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1 (1) in subsection (a)(1)— 

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

4 (B) by inserting ‘‘Becker, myotonic, 

5 facioscapulohumeral muscular dystrophy (re6 ferred to in this section as ‘FSHD’), Congenital 

7 muscular dystrophy, Limb-girdle muscular dys8 trophy,’’ after ‘‘Duchenne,’’; 

9 (2) in subsection (b)— 

10 (A) in paragraph (2), by inserting ‘‘cardiac 

11 and pulmonary function,’’ after ‘‘imaging, ge12 netics,’’; and 

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

14 sharing of data’’ after ‘‘regular communica15 tion’’; 

16 (3) in subsection (d)— 

17 (A) in paragraph (2)— 

18 (i) in the matter preceding subpara19 graph (A), by striking ‘‘15’’ and inserting 

20 ‘‘18’’; and 

21 (ii) in subparagraph (A), by striking 

22 ‘‘children with muscular dystrophy, such as 

23 the Department of Education’’ and insert24 ing ‘‘children and adults with muscular 

25 dystrophy, such as the Department of 


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1 Education, the Social Security Administra2 tion, the United States Administration for 

3 Community Living’’; and 

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

5 and shall meet no less than two times per cal6 endar year’’ before the period; 

7 (4) in subsection (e)— 

8 (A) in paragraph (1)— 

9 (i) in the matter preceding subpara10 graph (A), by striking ‘‘through the na11 tional research institutes’’ and inserting 

12 ‘‘through the agencies represented on the 

13 Coordinating Committee pursuant to sub14 section (d)(2)(A)’’; and 

15 (ii) in subparagraph (A), by striking 

16 ‘‘and rehabilitative issues, including studies 

17 of the impact of such diseases in rural and 

18 underserved communities’’ and inserting 

19 ‘‘public resources, and rehabilitative issues, 

20 including studies of the impact of such dis21 eases in rural and underserved commu22 nities, health economic studies to dem23 onstrate the cost-effectiveness of providing 

24 independent living resources and support 

25 to patients with various forms of muscular 


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1 dystrophy, and studies to determine opti2 mal clinical care interventions for adults 

3 with various forms of muscular dys4 trophy’’; and 

5 (B) in paragraph (2), by adding at the end 

6 the following: 

7 ‘‘(F) The development of clinical interven8 tions to improve the health of adults with var9 ious forms of muscular dystrophy.’’; and 

10 (5) in subsection (g), by striking ‘‘for the var11 ious forms of muscular dystrophy by prioritizing the 

12 achievement of the goals related to this topic in the 

13 plan under subsection (e)(1)’’ and inserting ‘‘and 

14 shall, not later than 6 months after the date of en15 actment of the Paul D. Wellstone Muscular Dys16 trophy Community Assistance, Research and Edu17 cation Amendments of 2013, in coordination with 

18 appropriate Federal agencies, including relevant of19 fices within the Food and Drug Administration and 

20 supported by the National Institutes of Health and 

21 Department of Defense, develop a plan to expedite 

22 the evaluation and approval of emerging therapies 

23 and personalized medicines that have the potential 

24 to decrease fatal disease progression across the var25 ious forms of muscular dystrophy’’. 


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

3 Section 317Q of the Public Health Service Act (42 

4 U.S.C. 247b–18) is amended— 

5 (1) in the second sentence of subsection (b), by 

6 inserting before the period the following: ‘‘and en7 sure that the program captures data from different 

8 racial and ethnic populations, and that such data 

9 are made publicly available to investigators con10 ducting public or private research on muscular dys11 trophy’’; and 

12 (2) in subsection (c), by adding at the end the 

13 following: ‘‘The Secretary shall also foster ongoing 

14 engagement and collaboration between the surveil15 lance program and centers of excellence.’’. 

16 SEC. 4. INFORMATION AND EDUCATION. 

17 Section 5(c) of the Muscular Dystrophy Community 

18 Assistance, Research and Education Amendments of 2001 

19 (42 U.S.C. 247b–19(c)) is amended by adding at the end 

20 the following: 

21 ‘‘(4) Update and widely disseminate existing 

22 Duchenne-Becker muscular dystrophy care consider23 ations for pediatric patients, develop and widely dis24 seminate Duchenne-Becker muscular dystrophy care 

25 considerations for adult patients, and develop and 

26 widely disseminate acute care considerations for all 


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1 muscular dystrophy populations. The care consider2 ations should build upon existing efforts currently 

3 underway for congenital muscular dystrophy, 

4 fascioscapulohumeral muscular dystrophy, limb-gir5 dle muscular dystrophy, and myotonic muscular dys6 trophy, and incorporate strategies specifically re7 sponding to the findings of the national transitions 

8 survey of minority, young adult and adult commu9 nities of muscular dystrophy patients.’’. 

Æ 


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