II 

113TH CONGRESS 

1ST SESSION S. 315 

To reauthorize and extend the Paul D. Wellstone Muscular Dystrophy 

Community Assistance, Research, and Education Amendments of 2008. 

IN THE SENATE OF THE UNITED STATES 

FEBRUARY 13, 2013 

Ms. KLOBUCHAR (for herself, Mr. WICKER, Mr. SANDERS, Ms. COLLINS, Mr. 

MENENDEZ, Mr. ISAKSON, Ms. MIKULSKI, Mr. LEAHY, Mr. LAUTENBERG, and Mr. NELSON) introduced the following bill; which was read 

twice and referred to the Committee on Health, Education, Labor, and 

Pensions 

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 (MD–CARE) Amendments of 2013’’. 


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1 SEC. 2. INITIATIVE THROUGH THE DIRECTOR OF THE NA2 TIONAL INSTITUTES OF HEALTH. 

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

4 U.S.C. 283g) is amended— 

5 (1) in subsection (a)(1)— 

6 (A) by striking ‘‘Muscoskeletal’’ and in7 serting ‘‘Musculoskeletal’’; and 

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

9 facioscapulohumeral muscular dystrophy (re10 ferred to in this section as ‘FSHD’), Congenital 

11 muscular dystrophy, Limb-girdle muscular dys12 trophy,’’ after ‘‘Duchenne,’’; 

13 (2) in subsection (b)— 

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

15 and pulmonary function,’’ after ‘‘imaging, ge16 netics,’’; and 

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

18 sharing of data’’ after ‘‘regular communica19 tion’’; 

20 (3) in subsection (d)— 

21 (A) in paragraph (2)— 

22 (i) in the matter preceding subpara23 graph (A), by striking ‘‘15’’ and inserting 

24 ‘‘18’’; and 

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

26 ‘‘children with muscular dystrophy, such as 


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1 the Department of Education’’ and insert2 ing ‘‘children and adults with muscular 

3 dystrophy, such as the Department of 

4 Education, the Social Security Administra5 tion, the United States Administration for 

6 Community Living’’; and 

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

8 and shall meet no less than two times per cal9 endar year’’ before the period; 

10 (4) in subsection (e)— 

11 (A) in paragraph (1)— 

12 (i) in the matter preceding subpara13 graph (A), by striking ‘‘through the na14 tional research institutes’’ and inserting 

15 ‘‘through the represented Federal agen16 cies’’; and 

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

18 ‘‘and rehabilitative issues, including studies 

19 of the impact of such diseases in rural and 

20 underserved communities’’ and inserting 

21 ‘‘public resources, and rehabilitative issues, 

22 including studies of the impact of such dis23 eases in rural and underserved commu24 nities, health economic studies to dem25 onstrate the cost-effectiveness of providing 


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1 independent living resources and support 

2 to patients with various forms of muscular 

3 dystrophy, and studies to determine opti4 mal clinical care interventions for adults 

5 with various forms of muscular dys6 trophy’’; and 

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

8 the following: 

9 ‘‘(F) The development of clinical interven10 tions to improve the health of adults with var11 ious forms of muscular dystrophy.’’; and 

12 (5) in subsection (g), by striking ‘‘for the var13 ious forms of muscular dystrophy by prioritizing the 

14 achievement of the goals related to this topic in the 

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

16 shall, not later than 6 months after the date of en17 actment of the Paul D. Wellstone Muscular Dys18 trophy Community Assistance, Research and Edu19 cation (MD–CARE) Amendments of 2013, in coordi20 nation with appropriate Federal agencies, including 

21 relevant offices within the Food and Drug Adminis22 tration and supported by the National Institutes of 

23 Health and Department of Defense, develop a plan 

24 to expedite the evaluation and approval of emerging 

25 therapies and personalized medicines that have the 


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1 potential to decrease fatal disease progression across 

2 the various forms of muscular dystrophy’’. 

3 SEC. 3. SURVEILLANCE AND RESEARCH REGARDING MUS4 CULAR DYSTROPHY. 

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

6 U.S.C. 247b–18) is amended— 

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

8 inserting before the period the following: ‘‘and en9 sure that the program captures data from different 

10 racial and ethnic populations, and that such data 

11 are made publicly available to investigators con12 ducting public or private research on muscular dys13 trophy’’; and 

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

15 following: ‘‘The Secretary shall also foster ongoing 

16 engagement and collaboration between the surveil17 lance program and centers of excellence.’’. 

18 SEC. 4. INFORMATION AND EDUCATION. 

19 Section 5(c) of the Muscular Dystrophy Community 

20 Assistance, Research and Education Amendments of 2001 

21 (42 U.S.C. 247b–19(c)) is amended by adding at the end 

22 the following: 

23 ‘‘(4) Update and widely disseminate existing 

24 Duchenne-Becker muscular dystrophy care consider25 ations for pediatric patients, develop and widely disVerDate Mar 15 2010 00:53 Feb 23, 2013 Jkt 029200 PO 00000 Frm 00005 Fmt 6652 Sfmt 6201 E:\BILLS\S315.IS S315

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1 seminate Duchenne-Becker muscular dystrophy care 

2 considerations for adult patients, and develop and 

3 widely disseminate acute care considerations for all 

4 muscular dystrophy populations. The care consider5 ations should build upon existing efforts currently 

6 underway for congenital muscular dystrophy, 

7 fascioscapulohumeral muscular dystrophy, limb-gir8 dle muscular dystrophy, and myotonic muscular dys9 trophy, and incorporate strategies specifically re10 sponding to the findings of the national transitions 

11 survey of minority, young adult and adult commu12 nities of muscular dystrophy patients.’’. 

Æ 


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